A Family's Journey to Health

A New Blog: Art & Healing

2008-02-22T10:47:00.000-08:00

Months have passed since Brianna died and the grief we feel is sometimes insurmountable. I have told my husband I am broken and will never be the same. I suspect he feels the same. But I do have days when the grief does not consume me and I think of our talented daughter with a smile on my face. Other times, I just sit and cry in disbelief that she is gone and that life has dealt us this nightmarish blow.

To help me weather the worst kind of grief a parent can experience, I have turned to my art and have started a new blog: Art & Healing. There, you will find some of the art I am creating and some of the emotional roller coaster we are still one. I lose myself in my art, and I have some quiet moments when I think I am still the mother of two children, before reality sets in. I love our son Trevor and know he is suffering too. But his life is still ahead of him, and he tries hard to try to be "just another 16-year-old" at school and with his friends. We understand, but also talk about the pain we all feel.

We have finally set up the charitable giving fund in Brianna's name. It is managed by Fidelty Charitable Gift Fund. This means that every year, our family and friends can donate to the fund and the donations are tax deductible. However, the minimum donation is $1,000. We are looking into ways that smaller donations can be made, either by matching funds or pooling donations.

In addition, we are also going through the charity or charities that could benefit from this money. Organizations, colleges or institutions that promote art will be our focus, since Brianna had a passion for art. For those of you who donated, we thank you so very much for your kindness.

I will be adding links about the charitable giving fund on my new blog and website. We appreciate the love we have felt from so many in the arts community, from friends and family, and Brianna's friends. I will leave you with a quote from the book I read often, Healing After Loss, by Martha Whitmore Hickman:

I am, and always will be, a part of all that I have known.

Forever in Our Heart

2007-07-30T16:10:00.000-07:00

It's been almost a month and half since Brianna died and an hour doesn't go by that I don't think of her. Every day, it is hard to get out of bed and crying is something I do on a regular basis. Several hours will go by when the grief is not foremost in our minds. John, Trevor and I have had some nice family time together recently, but it is bittersweet. When we're enjoying ourselves, thoughts of Brianna float into our minds and we all realize just how much we miss her. This is a pain that no parent or brother or sister should have to bear, and yet here we are having to struggle through it. Family and friends continue to help us, and my art has given me some respite from the constant ache in my heart.

The response to Angels for Brianna was beyond our imagination. We are grateful to all the artists who participated, and to all who bid on the beautiful angels available. The workmanship and talent was amazing, and to the organizers, Colleen, Sylvia, Kitty and Stephanie we are so very appreciative.

We received two packages in the mail over the past week or so. The first was from King of Mice Studios, Carolee Clark. You may remember, one of the items in the auction was a breathtaking box painted with Brianna's image on it and stars with crystals. Well, Lyndy purchased the item and sent it to us. I cried when I opened it and read her card. Lyndy, you have no idea how special this is to us, thank you, thank you. With tears in my eyes, I am writing this to let you know I will use it to keep all of Brianna's jewelry. She would like knowing that her special things will be kept in a truly special keepsake.

The second package was from Deerfield Farmhouse's Christine Crocker, an artist who is in the Directory of Traditional American Crafts 2007. She donated an angel doll to the auction. Her work is unbelievably detailed and lovely and someone sent us the stunning angel. The purchaser remains anonymous, but I suspect she has been one of our greatest supporters. You know who you are, and I want you to know that we are ever so grateful to all that you have done for us. I have placed the sweet angel next to Brianna's portrait in our family room and next to the crown given to us by Donna O'Brien of the Ribboned Crown. I will cherish these things until the end of my days, when I will see Brianna again.

I also want to thank Donna for helping me get out and work on art. Soon after Brianna's funeral, she signed she and I and Colleen up for a class held about two weeks ago and lead by Ulla Milbrath at Castle in the Air in Berkeley . (Ulla contributed the decorative and beautiful filligree necklace for the auction.) The class was Fairy Tale Altered Books and we had a good time. We all felt Brianna was with us. Before class, Ulla presented me with an antique paper angel that was used during celebrations at a church. It has curly hair and blue eyes and reminds me of my daughter. Thank you Ulla for such a thoughtful and wonderful gift.

As the days go by, I can't stop thinking "Why? Why Brianna?" It is something that will haunt me for a very long time. We went to the Compassionate Friends meeting last week and most of the parents there had children who passed away several years ago. They were so supportive and understanding of each other and us. And they acknowledged that it takes a long time before you stop asking "Why?" and accept what is. We all talked about our children who died and our children who survive. We discussed how they get messages from their beloved children. One woman told us how she found a lone cloud in a clear blue sky in the shape of the first letter of her long gone son's name, and how another has butterflies landing on her when she thinks of her son. The group meets monthly and John and I plan on attending for a while.

I've written much here, I know it's been a long time and I know it is a bit disjointed. I have written more in a journal I'm keeping. It began as Brianna's Idea book. She had cut and pasted art ideas and drawings of things she wanted to create into a large, bound sketch book. Only the first 15 pages or so were filled during the past year. Hopes and dreams she will never fulfill. I have commented on some of her ideas and how she so wanted a laser cutter to make laser sculpted, acrylic pendants. I have written how I actually priced one out for her and found they run about $10,000. Besides the price tag, it wouldn't have fit in our home. I had to tell her no on that one, but she understood. I am writing memories about her and the things she did that made her so unique and the daughter I love and miss so very much.

Brianna ~ You are forever in our hearts. God bless my sweatheart.

Angels for Brianna Begins Sunday, July 8

2007-07-06T13:45:00.000-07:00

Many caring and talented artists are contributing to an online art auction in honor of our daughter Brianna Lauren Grant, Jan. 12, 1990 - June 15, 2007. Angels for Brianna will last for one week, beginning Sunday, July 8, and ending on Saturday, July 14. Our family is so touched and appreciative of the 70 or more artists who have donated their time and talents to memorialize our courageous and beautiful daughter who died in the hospital after four months while undergoing a bone marrow transplant. Brianna is in our hearts and her loss is felt by many. We are broken by her passing. No words can adequately express our gratitude to all of you for your time and talents. For now, we can only say thank you, thank you for all that you have done and continue to do. Please click on the link above for information about the auction.

Grace

2007-07-03T12:35:00.000-07:00

Many family and friends came to Brianna's funeral. Because we were in such grief, I did not think to take pictures. Actually, it made me so sad to think of taking pictures, because all I wanted to do was forget that my baby was dead. But one friend, Virgil, did take some and I'm glad he did. This is one of his pictures of the dove release.

Our family gathered around Brianna's casket and we were each given a dove to hold. At the same time, we released them into the air. They circled several times before journeying home. The release symbolized Brianna's spirit rising and joining other family members who have passed away and are now in the heavens. The doves also symbolized "letting go" and the beginning of our grieving. We all cried softly as the beautiful birds fluttered away together into the sky.

We have received numerous cards of condelences with special notes written from many of you. They are all special to us. I'd like to share one in particular.

While Brianna and I were in the hospital, she would would get massages to help relax her. One of the volunteer therapists, Kathy, always came in with a smile and laid healing hands on Brianna as part of the massage. She even spent extra time giving me one on my neck and shoulders, when she could. She sent a special card with the word "Grace" surrounded in glitter and inside she wrote a beautiful note:

Iva,
You and Brianna are in my thoughts.

I will always marvel at what I sensed as your daughter's calm and completely centered place at the heart of her being. Repeatedly, as I worked with her, regardless of what was swirling around her, or happening at the physical level, she seemed to have access to this core. I believe this core was the place of true healing for her.

I wrote the enclosed Haiku in Brianna's memory. I am blessed to have been touched by both of you. Peace...Kathryn

Here is her Haiku:

Within
Stream fall over moss
One leaf glides to pebble path
Dew rests on stone bench

Storm in wrong season
Gales rage outside courtyard walls
Garden calm, pond smooth

She walks here in grace
Where the courageous soul lives
Her still sacred space

Thank you Kathryn...John and I both thank you. We will treasure your words and poem, along with the cherished memories of our sweetheart.

Missing Our Dear Angel and So Many Kind People

2007-06-27T08:06:00.000-07:00

The past few days have been a blur. Our hearts are broken, and I feel like I am suffocating at times. There is nothing so horrible like the death of a child. We have purchased several books on how to go on living after losing a child. They have helped somewhat, in that we feel like there are others out there who are like us - hurting beyond belief. We will be meeting with a grief counselor of the Compassionate Friends group this week.

In our society, if your husband dies, you are a widow; if your wife dies, you are a widower; if your parents die when you are young, you are an orphan. But what is the term for parents whose child dies? It is an abomination of nature, thus there is no word.

John, Trevor and I console each other, talk much about Brianna and look at the many photos of her we put together on two large memory boards at the funeral. I've been lighting a scented candle near her photo every night and last night I felt her arms wrapped around me and heard her whisper, "The candle smells nice, mom. I love you." The hurt is too hard to bear. She is loved so very much.

Brianna, our angel, has touched the lives of many people. She would smile at that thought. A wonderful friend made a gorgeous crown for Brianna to wear, as she goes into her next life. It says, "Brianna, Our Angel." She gave me one as a remembrance. (I will take a picture and post it next time.) Brianna is also wearing one of two matching bracelets given to us from a dear friend. I wear the other. I also surrounded her with the things she loved, a Sharpie for drawing, a scroll with loving words from family and friends, her Hello Kitty nodder, green Extra gum, her Tazo Passion tea, a heart-shaped pillow given to her by grammy, photos of her with her family and other items. She is wearing the dress and sparkly shawl she wore to my cousin's wedding last June in Tahoe. One year and life has changed so dramatically.

We will scatter Brianna's ashes over the ocean in Southern California. We will include flower petals too. Brianna loved going to the beach with her friends. It was that image that helped her many times while she was naucous and uncomfortable in the hospital. She found the ocean calming. Her family will be surrounding her with love.

So many kind people have helped us along our journey, and even more have come forward to help now. Some dear friends who are artists have put out a call to other artists and friends to contribute to an art auction in Brianna's honor. It is called, "Angels for Brianna." All items are angels and the artists who are contributing are beautiful people and very talented. Colleen Moody, Sylvia Anderson and Kitty Forseth are coordinating this effort on our behalf. Brianna would love this, because she started a collection of angels before entering the hospital.

Angels for Brianna will take place in the next few weeks. I've listed the blogs where you can find information and the exact start date. There are many other people who are participating and have listed the auction on their website or blog. Thank you friends for having such big hearts and reaching out to us. Please visit Syliva's blog (http://sylviaanderson.blogspot.com/), Colleen's (http://www.colleenmoody.blogspot.com/), and Kitty's (http://kittysglitter.blogspot.com/) for more information.

It is getting harder and harder for me to write here. I sob uncontrollably. I will continue though, because I know Brianna would encourage me to. John, Trevor and I are hurting so much, but your thoughtfulness, caring, patience and kind words help ease a little of our sorrow. We thank you for that.

My Eulogy to My Lovely Daughter, As Read June 21, 2007

2007-06-22T07:21:00.000-07:00

Our dear daughter has slipped the surly bonds of Earth to touch the face of God. She leaves a huge emptiness in the hearts of all of us who loved her, many who were her friends, and even more who just had a glimmer of her through our family.

It’s cliché, but Brianna was truly beautiful inside and out. You could feel her energy when she was near. She was 17, bubbly, outgoing, vivacious, funny, silly at times and just simply like no other. She wanted to try all things new and was not afraid. Brianna enjoyed life and was eager to taste all that it offered.

We planned to go to Paris, as part of her Make a Wish. She wanted to see Alaska and she would have loved to experience Japan. She liked almost anything that had an Asian flair, and loved sushi. While she was in the hospital, we made plans for the family to go back and visit Memphis to enjoy her favorite sushi restaurant. Also, she wanted to bask in the sun while sitting in the lovely backyard of our dear friends and neighbors Alissa and Steve.

I’m telling you these things because some of you only knew Brianna through me and didn’t get a chance to be impressed by her, like so many were upon first introduction. Those of you who did know her, realize that we will miss her laugh, her funny little squeals, and the sparkle in her big blue eyes.

She had a wide taste in music from Johnny Cash to Green Day. She loved to dance and to to concerts. Brianna’s love of art varied from large scale stencils and street art to abstract and the masters. Her room is a collection of Hello Kitty, quirky signs, doodles from friends and her own hand and different little things she found interesting. She had a knack with her camera and would take candid pictures of friends and even herself. She made so many, many friends in her short life.

Brianna really had it all. She was beautiful and smart and warm and caring. She would have been deciding this summer if she were going to attend an art school in New York and follow her passion of creating hand crafts, sewn bags, stenciled clothes, journaling or painting. Or, if she would take the more practical approach and head to MIT and follow her love of math and chemistry.

She and John shared a close father/daughter relationship. They had similar personalities looking for adventure and a willingness to move to new cities and see the world. Brianna would turn to him for advice about school, college choices and career. He was the champion of her dreams. When she was worried, she’d go to him and he’d calm her fears, ending their conversation with a hug and “I love you baby.”

Brianna loved her brother Trevor immensely. She shared a special bond with him that only comes from being close siblings and close friends. You would hear them talking together in one of their rooms, or exchanging knowing glances and laughing about something, and relying on one another when alone. Every night they told each other I love you before going to bed.

Brianna and I shared a closeness that only a mother and daughter can. We laughed together and cried. She loved to create almost anything and I indulged her. We’d go shopping and she’d find yet another purse to bring home and add to her growing collection. She began to take more of an interest in vintage clothing and antique items, and we’d go to the antique market or thrift shops together looking for unique treasures. I would often turn to her for an opinion on a piece of art I was creating.

Brianna and her friends Chelsea and Nina would come over and hang out in my studio and make jewelry, painted shirts, altered tees and whatever their hearts desired. Or, they’d be in the kitchen cooking up a new recipe Brianna found and wanted to try. You’d hear them all giggling and sharing stories. Brianna would always make more to share with the rest of the family. She was so considerate.

Most importantly, Brianna was brave, courageous and strong. In the hospital, she made plans to start a garden and begin a regular exercise program when she was well. She crocheted a frosted cupcake and donut with beaded sprinkles, and she met the winner of last year’s Suvivior series. The doctors, nurses and other care professionals were touched by her sweetness and fortitude. And they saw her willingness to do what had to be done to get well, often called her a “trooper.” Really, she was a warrior.

She lived only a short 8 months after her diagnosis of MDS, and of those four were in the hospital. She fought with all her might after undergoing a bone marrow transplant and getting a lung infection in February. I stayed with her sleeping in the room until two months ago, when Brianna was admitted to the intensive care unit with pneumonia. She was unconscious for almost the entire time. I held her hand often in the hospital and stroked her brow, massaged her feet, encouraged her, talked to her and told her I loved her. The cruel part is that she was so close. Just a week and a half ago, she was communicating with me and the nurses picking music to play and pointing. Then, last Tuesday her heart temporarily stopped from bleeding in the lung. By Thursday, it was evident she would not recover and on Friday I held her hand, pressed it to my face and kissed her for the last time.

I want her near me, to feel her cheek pressed against mine and her arms wrapped around me squeezing me like she did, and say “Mom, I love you. I’m so glad you’re my mom.” Or when she hugged John and I and said “I’m so glad you’re my parents.” We strove to give Brianna roots and wings, we just never thought she’d fly so high, she would soar beyond our reach. My dearest darling, we will miss you forever and can’t wait for the day when we can be together again to laugh, share, hold each other and say I love you.

Brianna has gone into the light and is now free.

You are Welcome to Say Goodbye to Brianna on June 21 at 11 am

2007-06-16T19:29:00.000-07:00

Brianna Lauren Grant
Jan. 12, 1990 - June 15, 2007

Beloved Daughter of
Iva and John Wilcox
and James Grant and
Mary O'Callaghan

We said our goodbyes to Brianna yesterday. Her spirit was already gone, so she was taken off the ventilator. Her heart quietly stopped. I held her hand to my cheek, stroked her brow and kissed her forehead. John and Trevor told her they loved her. Her family surrounded her, held her and wept softly. I love you forever my darling, and I will see you again.

Funeral Services will be held:
Thursday, June 21, 2007
11 a.m. and a Wake will immediately follow

St. Timothy's Episcopal Church
1550 Diablo Road, Danville, CA
(925) 837-4993

Donations may be sent in Brianna's memory to the National Art Honor Society at Monte Vista High School, 825 Hartz Way, Danville, CA 94526.

Our Beautiful, Intelligent Daughter is Gone

2007-06-15T06:41:00.000-07:00

Our beautiful, intelligent, talented, fun-loving daughter has gone into the light. We are left with such heartache and sorrow, I cannot even express. Brianna fought so hard and was so couragous, but was unable to overcome injuries.

Yesterday, the doctors told us they were very concerned about neurological damage after her cardiac arrest. Their concern was heightened hours later when her pupils were unresponsive to light and she didn't respond to pain. They believe that on Wednesday, almost 24 hours after her heart stopped, her brain died.

A caring neurologist, the ICU doctor and the BMT doctors took us into a small room and told us that Brianna had undergone brain death. They based it on an EEG and a thorough exam. But we knew before they told us, this was the case. We stood in the room while the EEG was recording her brian waves, and there was no activity. As the neurologist told us, brain death means death. They believe her brain swelled from lack of oxygen and caused it to herniate down into her spinal column.

We came home last night to tell Trevor, and all of us will be going back to the hospital today to say good-bye. They wanted to give her more time, just in case. We prayed for a miracle. Her body is still on life support, and it's still her hands, her feet, her eyes, lips and hair. But you can see she is no longer there. I held her hand and put it up to my cheek, just to feel her touch again on my face. But she is gone. And today we will all gather around her. Later, they will take off the epinephrine that is keeping her heart pumping.

It wasn't supposed to end like this and a huge hole has been cut from our hearts. Trevor has missed her for the past few months, only seeing her while she was on 2North. But today he too wants to see her and say good-bye. My sister and brother, mom and dad, Jim and Mary, and Joyce will surround her with love.

I will never hear her voice again or see her laugh, or hug and hold her. She will be in our hearts forever. Each day is a gift. Don't take anything for granted. Hug your children, and tell them you love them. I will post the date and time of our precious daughter's funeral.

Next 48 Hours Still Critical for Our Sweetheart

2007-06-13T17:50:00.000-07:00

Here is our beautiful daughter having fun in the snow. God how we love her and pray she makes it through this critical time.

We have been told that the next 48 hours will have to be taken hour by hour in Brianna's recovery from yesterday's cardiac arrest. I learned that they had to apply chest compression on her heart for 30 minutes in order to keep it going, while the extra chest tubes were inserted to reduce the pressure build up. The reason for the arrest was that the pressure inside her chest made it impossible for her heart to beat against that pressure. But in the process her heart has sustained some damage. It will heal. But just like any part of the body, the bruise will take time to heal. The height of the bruising will be tonight, which means the heart will be its weakest.

So last night Brianna held her blood pressure okay. She is still on an epinephrine drip in order to help her heart beat. But this afternoon, I was in her room and the oscillating ventilator alarm went off. Brianna began to cough and move and the oscialltor is so senstive it almost shut off. This started her blood pressures her heart rate and to drop. They had to push more epinephrine and her blood pressures came back. Her heart had not stopped, it just took a dip.

The doctors have told us that she is on close to the maximum amount of epi she can be on, plus they are giving her extra doses to stablize her blood pressures. They have told us they are very concerned about the trend of her needing more epi right now, rather than less. They also called Jim to tell him he should be here tonight.

She needed "volume," as in fluid to give her heart enough to pump the oxygen through her system. She has been given many units of platelets, packed red blood cells, albumin and other products in order to maintain a higher venus pressure allowing her heart to beat easier.

The doctors also told us that the new chest tube insertions were not done under the most sterile conditions because of the urgency. So any bacteria introduced may peak tonight. Already she's had a fever today. They've taken her off the Linazolid and put her on vancomyecin and meropenum. And, because she needs so many medications, they needed to add another central line. This one was put in her groin and has three leumens, which adds to her already existing two other deep-vein lines.

In our care conference today, the doctors told us that the next day or two will tell whether Brianna will make it through this. We won't know anything about her neurological status until she gets past all this and has been weaned again on the ventilator and is able to wake up. Some feel she won't have any, others think Brianna will have some brain damage.

I stand next to her bed and stroke her brow and her head. I also used a wash cloth to clean off the dried, splattered blood on her hands and arms. And, I talk to her and tell her how much we love her and that she needs to continue to fight.

Thankfully, John is with me. My cousin Ogi came this afternoon and was here supporting me during Brianna's crisis today. My parents also are here as well as Trevor. It's finals week at the high school. I can't help but think that Brianna would be celebrating her last day of school tomorrow. Instead, we'll be happy with her making it through the night.

All of your prayers, encouragement and email posts mean so much to us. Thank you all for your continued support, love and hugs. As one of my friends have said, we are in the darkness right now and we pray we will see the light soon.

Please Pray for Brianna Over the Next 24 Hours

2007-06-12T20:07:00.000-07:00

Before today, I've tried to sit and finish the blog a couple of times. The great news was that tomorrow Brianna was going to be extubated. A lot of other things happened, but they are of no consequence now. Everything changed today at 4 pm.

I was in Brianna's room for most of the day. She was answering questions and was very alert even though she was uncomfortable with the tube in her throat. She started to cough and the nurse suctioned the tube. But as she began to pull out the stuff Brianna was coughing up, it became bright blood. More of it began to come out and the nurse quickly called a respiratory therapist and the doctors. I watched as Brianna continued to cough and they suctioned blood from her endotracial tube. Then blood began started to come out of her chest tube. I left because it was obvious that this was serious.

I called John and came back to wait outside her room where Lizzi (our BMT nurse practitioner who's been with us from the beginning) called up on the computer the chest x-ray that was just taken. The left "good" lung looked okay, but the right lung was showing a little hazy area. Then a nurse rolled the crash cart (for restarting a stopped heart) to Brianna's door. "Just in case," he said

Soon after, doctors were rushing in packed red blood cells, platelets, and clotting agents. Brianna was bleeding into her lungs. I stood with Lizzi while more people began running in. The light went on outside her room and they opened the door and grabbed the crash cart. John was still on the road.

For a while our wonderful, beautiful daughter left this earth. The doctors applied compression and she didn't respond. It wasn't until they put a board underneath her back that she responded and her heart began to beat again. That coupled with powerful drugs like epinephrine brought her back to us. Her blood pressure dropped and they are having a hard time stabilizing it.

Our physicians from both PICU and BMT are more critically concerned tonight than for any other event Brianna's dealt with. Both David Cornfield, head of PICU, and Christina Alvira, the PICU attending, worked to bring her back when her heart stopped. When you see tears in the doctor's eyes, you know they care about you and your child and that they are very concerned. We have been told that this is an hour-by-hour situation and that the odds are not in our daughter's favor. If Brianna can be kept stable tonight, and beyond, we won't know if there is any brain damage from possible lack of oxygen while "crashing" until she wakes up.

She is back on the oscillator to help provide compression to stop the bleeding inside of her lungs. They think an artery in her right lung broke or was invaded by the aspergillus, although they aren't certain. Aspergilllus's MO is to infiltrate the lung tissue and surrounding blood vessels. The doctors also had to put in two more chest tubes. She already had one on the right side, but now she has a second one on that side near the back of her lung. They had to put a new one in her left side. While they were giving her oxygen and hand expanding her lungs, they tore a small hole in her left lung. The tube is to help drain any air that may be leaking into her plueral space between the lung and the ribs.

As I write this, John and I are on a vigil in, and just outside, her room hoping and praying to beat the odds again.

Wondering, Waiting and Worry

2007-06-08T18:17:00.000-07:00

Brianna shows off a sweet little Marie Osmond doll named Brianna that was sent by one of my sweet friends and her daughter from Pennyslyvania. Oh to see that smile again. Soon, we are told, soon the tube will come out.

The waiting, wondering and worry is an ever-present state in our lives. Brianna's sedation has been tapered down enough that she is waking and definitely there, answering questions. Of course, she is gagging and coughing a lot due to the tube. Well I knew the Tuesday extubation was premature. I'm actually upset that they even mentioned it, because they obviously didn't think it through. She has not been extubated and from our Patient Care conference on yesterday, it probably won't happen until early next week - a week after they said it would!

So the biggest issue they saw was that despite the fact that Brianna's lungs are in good enough condition to breath without the ventilator and with a little help from an oxygen mask, her muscular strength is not where it needs to be in order for her to protect her airways. In other words, if she vomits or coughs up something, will she be able to move her head so that she doesn't choke on it. We most definitely want to be on the safe side and wait, but it seems like they jumped the gun.

So for the past several days, Brianna has been awake and moving more with each passing hour. She is still coughing and gagging, but is also answering questions yes and no and giving a weak thumbs up. She is very slow, mind you, but again, I would think that would be the case with anyone if they were in a bed for seven weeks, fighting the worst of infections and not getting all the nutrition needed - even becoming catabolic for a few days. On top of that, every doctor that walks in is asking for her to wiggle her fingers and toes. She just stares at them like, "What am I a show dog?"

But an electroencephalogram (EEG) was ordered as was an MRI, after the neurology team came in and examined her. They felt she was not as responsive as they would have liked and felt that maybe she was having seizures "subclinically." Or, having seizures without any outward physical signs.

The tech for the EEG came around 5 pm and hooked Brianna's head up to 30 tiny electrodes. She had to wash 30 little areas of her head, squirt on conduction goop, sick on the electrode and then tape over it so it would fall off. The test itself was only 20 minutes, but the whole preparation and clean up before and after took a long time.

What it told us was that she had "diffuse slowing," meaning she's on a lot of drugs. The MRI is being done tonight to rule out any damage to the spinal cord or brain stem from blood clots or past seizures. Because she is VRE positive, meaning she had an antibiotic vancomyecin resistant entereocaucus, they have to take her as the last case. Last means 11 pm tonight. Most of the doctors think everything will be fine, but they want to rule it all out.

In the meantime, she has become more and more aware of her physical limits and that she's on a ventilator. She has cried several times thinking this is all permanent, even though we tell her it is not and she is just weak and the tubes will be out soon. Soon for the doctors is early next week. I just hate seeing her so tortured by the tube in her throat. On the other hand, I am so thankful that we at this point looking back at where we started in the PICU.

The other issue the doctors were concerned about is that since her kidney function had been greatly reduced, how quickly were the drugs clearing from her system. Probably not very well, we all suspect. So the renal team was called in to see what could be done to bring her Urea Nitrogen (BUN) and Creatnine down. They were at 154 and 1.7. The thought was that since her BUN was so high, she could also be suffering from something called uremia. It causes confusion. Their plan was to give her more fluids and thankfully over the past few days, her BUN has dropped to 102 and creatnine is now 1.5. Not a lot, but the trend is definitely headed in the right direction. (Now, I sound like one of the doctors using their typical rhetoric.)

She has had several fevers too and that worries me. They have cultured all her IV lines and nothing has grown out, thankfully. So they are being watched, but nothing specific is being done about them.

I had a very tough weak, with all the worrying about possible brain damage or spinal cord injury. Then the sight of her struggling with the tube in her throat and her extreme muscle weakness. In some ways the beautiful pictures of her I've taped on her room door are wonderful and sad. I put them up so that all the medical team could see they were treating a beautiful young woman, even though she didn't look like her pictures at the moment. But I'd see these pictures and wonder when I'd see my wonderful daughter like that again. Soon, I know, it's just so hard living these days.

As I have said before, we have come so far, and we have so far to go. Every month, I get a free parking pass from admitting. I use it everyday and the expiration date is written on the plastic card in black sharpie. I look at that date and wonder what it will hold for us. I thought for sure that by June 15, we'd be back in 2 north on the transplant floor and out of the ICU. Now, I'm not so sure, since she will spend several days after extubation in the ICU for observation. So many times I've looked at that date and thought "Oh, we'll be going home by then." I am still learning I have to live day by day, and it is a challenge when you have hopes and dreams of seeing your child well again soon, only for those hopes and dreams to be dashed.

We are all so happy to see Brianna's gorgeous blue eyes looking at us, and know that soon, very soon, we will be back on the transplant floor. Soon, just isn't soon enough sometimes for me.

Using the "E" Word

2007-06-05T09:46:00.000-07:00

Brianna and Trevor smiling brightly for their mom and her ever present camera at family events. I'm so glad I take lots of pictures!

Brianna continues to have good days. She did have a small fever, which again makes me concerned about what's going on. But the doctors have been "sprinting" her on the ventilator every day. In fact yesterday, she breathed "on her own" for nine hours and did great. They are giving her very minor support and she is doing fine. So yesterday morning they even started using the word extubate. My jaw dropped when the doctors talked to me after rounds Monday and said that today they would probably extubate tomorrow. I repeated, "Tomorrow??" I was stunned!

I didn't want to get my hopes up. I was actually thinking I'd be happy if it happened before the end of the week. It looks like that may be more realistic.

Even though Brianna is doing well with her lungs, her sedation is now an issue. In order for her to be extubated, she has to be able to follow their commands and cough. They remove the tube during a cough so the body doesn't clamp down on it and cause damage to the trachea. They weaned Brianna off much of her sedation, but she is still very groggy and unable to follow commands. They don't believe there is any reason she would have neurological damage. It just may take more time for the drugs to leave her system since her kidneys are still not functioning 100 percent.

She opens her eyes and stares. But when I ask her to look at me, it's as if she doesn't hear. Of course, this too makes me worry that something has gone wrong. But I know that the doctors are right and that she may need a few days to be more "awake." Who wants to be awake with a tube in their throat? Not only that, but for the past few days, she hasn't gotten enough total parental nutrition (TPN) - her gatorade looking IV food - so her body has been catabolic. It's using her muscle and fat stores for calories. This isn't good, because she doesn't have any stores or muscle. So she is extremely weak and they expect her to squeeze their hands.

On one side, I'm so elated they are talking about getting her off the ventilator, and her lungs are healing. On the other, she is so weak and medicated, they have said that if she doesn't start to "wake up" more in the next few days, they'll start to run tests to see if she has any brain or nerve damage. I'm sure you understand our anxiety level.

I did get a break again this weekend to help ease my stress level. My dear husband came to the hospital early Sunday morning so that I could meet up with my friends Colleen and Kitty and Shelly at the Alameda Point Antique Market by the Bay. Some 800 vendors are usually at the show. It's something I went to regularly before Brianna's diagnosis, and I use much of my finds in my art. So it was a nice retreat to do something "normal" and browse all the vintage and antique goodies. One of my favorite artists was there Wendy Addison. She always has great items. Of course, I'd see something funky or 70s and think of Brianna and how she loved pieces like that.

Also at the show, I saw Joanie, the mother of Trevor's best friend Kevin. She was there with two friends, one of whom said she recognized me from the blog. We hugged and cried and they said they were amazed at how well we are handling Brianna's illness. The truth is you just do, you have to for your child. There is no other option. I realized how I naive I was going into the transplant procedure. I really broke down when one of her friends said they were praying for us and they don't even know us! I am always so touched by those words from strangers.

Another friend of mine whose young 8-year-old daughter is ill was going to come visit. She couldn't because her daughter had a seizure from a new medication she started. She said she got a glimmer of what we face with Brianna. But she got more than a glimmer. When you fear for your child's life and well-being, time stops and nothing in the world matters than getting your child well.

We both have a long road ahead of us with our daughters recovery. But we are similar in many ways. We have much family and many friends to lean on when we feel we can't endure seeing our children suffer any longer, or when we lose sight of the little steps of progress being made toward their health. I thank God for my husband and son, my parents and the rest of my family who are there when we need them. I am also thankful for all my friends who I can turn to when I need support. And, I am so touched by the many people I do not know personally, who help our family with meals and driving, who pray for us and who send us healing thoughts everyday while our journey continues.

Signs of More Wakefulness and Pain

2007-06-02T17:41:00.000-07:00

Here is a picture of Trevor and Brianna with their grandparents. My mom and dad live in Reno and are close enough to come and help us. It's a nice reminder of our visit to their new home during the holidays last year.

Brianna continues to have good days. I am so thankful. They continue to wean her from the ventilator and are increasing her "sprints," by making her do more of the work breathing. She really has done well with during them. They are four times a day for about two hours each.

As the good days add up, the doctors think more of extubation and where she needs to be with her sedation. The tricky part is ensuring patients are comfortable, but awake enough that they will breath on their own once the tube is pulled out. They've really come down on her sedation and starting yesterday, it's very apparent Brianna is not totally out of it. She opens her eyes now and looks almost confused, but also like she's trying to concentrate on not gagging. Today, she gagged twice and even threw up mostly bile, because of the sensation of the tube. She also winces when you move her or touch certain areas that are sore or painful - practically her entire body!

I explain that she's in the intensive care unit and that the tube will be coming out soon. I don't know if it helps. I do know she is not comfortable.

When I mentioned to one of the nurses that it's a fine balance between coming down on the sedation and making sure the kids don't gag, her response was "that's a good problem to have." She is so right. Brianna has come so far, but we have a long, long way to go still. I thought it was funny when one of the BMT doctors actually thought Brianna would be awake enough to write notes and communicate and not gag. I kept thinking, "Right...Brianna would never be okay with that." She is not into the medical field and she has stressed to us early in her stay that this experience has not made her interested in becoming a nurse or doctor. Quite the opposite.

Also, she has a lot of extra fluid on her and they're trying to get that under control with the diuretics. But as the PICU attending doctor Sarah Kache believes, once Brianna's out of the PICU and off the diuretic IV drip, she's going to have to manage extra fluid and not have it affect her lungs. Thankfully, it hasn't so far and my hope is that she is either even or a little negative with her fluid balance by tomorrow morning. I think that's what the doctors are aiming for too.

A new concern is that she may have another chicken pox re-activation. The troubling part is that it's on the other side of her body, completely opposite from the original infection. As you may know, the chicken pox virus, once healed, retreats to a specific nerve bundle along the spinal cord. If you have a break out of shingles, it will only appear on once side of the spine along those nerve endings. The doctors cultured Brianna's skin today and the test results should be back tomorrow to be certain. The infectious disease doctors think it's just skin break down, which seems to be another issue she's dealing with right now.

Because she's been laying in bed for six weeks now, areas of her scalp have sores from where her head touches the mattress. We move her head to relieve the pressure on those areas, but new ones crop up. So the sooner she is up, extubated, and moving, the better.

We have gotten so many gifts and cards. I have to say a special thank you to my dear friend Debbie for the beautiful gift she sent, and to Pixie Patch, Jenny, for the special piece she sent. Also, I need to send a heartfelt thank you to Stacy. You are so kind and generous, words just don't begin to express how appreciative we are. As I've said to many of you, it's not easy for us to be on the receiving end when we've always been in the giving mode.

So many of you have sent Brianna such wonderful things, from cards and gifts, to pictures and emails. Each is a special gem that we will cherish for a long time. Although it is very lonely here at times, it is so nice to know we have a huge family of friends and relatives who are praying and thinking about us always.

God bless.....Iva

Taking One Day at A Time

2007-05-31T06:40:00.000-07:00

Here's a great photo of Brianna and her friend Chelsea. They had so much fun together, especially when their friend Nina joined them. I will be so happy to see then all together again, one day soon.

Again, it's been several days since I've posted. Brianna stabilized Sunday afternoon and even improved. And, I was able to go home Sunday afternoon and evening, while my wonderful husband stayed with Brianna at the hospital. In fact, when I got back on Monday, he held down the fort at the hospital so well and Brianna made great improvements, the doctor said that I will have a hard time following in his footsteps. We laughed, but I was so relieved Brianna had made so much progress.

On Sunday, Trevor and I went to see the new Pirates movie. It was great fun, and I enjoy Johnny Depp so much - even Keith Richards makes an appearance! We went to an early dinner and then just relaxed at home watching TV. Of course, I did my laundry and grabbed several things to take back with me to the hotel. It was actually so nice to be home, but not long enough. I slept well in my own bed too. I thought about how Brianna was doing and just prayed her progress continued.

Monday morning, Trevor and I went to the mall to do a little shopping for him. He needed shoes and he asked if we could go. So we picked up a pair for him and I even found a pair. I did get teary eyed when I saw the Sanrio store in the mall. Brianna loves that store with all its Hello Kitty brand items for little girls. At Christmas I bought her the little contact case and a Happy Kitty that nods its head when the sun hits it. I was missing her again something fierce. We haven't heard her voice in almost six weeks, and I haven't felt her arms hugging me. She's there in bed I know, but it is still so very hard.

Later in the morning, it was time to head back to the hospital in time for all of us to go to lunch. I miss Trevor too. He is so tall and handsome and has such a great laugh. It was a great little reminder that life will be normal again, it will just take lots more time. John and I made the switch so he could get some things done at home and Brianna continued to do well. He and I are like two ships passing in the night, and I miss him terribly.

Then on Tuesday, we had another Care conference. The focus of this one was to determine whether Brianna should have surgery right away, or wait. After the surgeon looked at her CT scans, he met with the other doctors first. They called us into the meeting 30 minutes later. The BMT team, PICU team and Dr. Whyte the lung surgeon all agreed that we should wait maybe two to three months before Brianna undergo any further surgery. They made the point that she was just too week and the lungs needed more time to heal before surgery. As Dr. Whyte put it, its a risk/benefit thing, and right now it would be too risky.

I was relieved on one hand, because I know she would be too weak to handle it. That her lungs were still healing, and with another miracle, maybe she won't need it at all. But on the flip side, her chest tube drainage grew out aspergillus (something we learned only a day or so ago). And that scares me terribly. But as they all said, we know she has the fungal infection on the right side. So it's really no surprise, and as each day passes, Brianna's immune system - as new as it is - is able to send more of those neutrophils to the site and help in the fight.

John again came down for the meeting. I am so lucky to have him. He feels exactly as I do. Neither one of us will rest easy until that thing is out of her or we know it is completely gone.

As for her chest tube - which she still has some 7 weeks after her first surgery - it will stay in, but be switched out with a smaller, more comfortable one. The reason is she has a hole in her lung and the tube is allowing that air to escape out of her chest cavity. Until the hole heals or is surgically fixed, the tube has to remain, and it may mean keeping it until she has the second surgery.

The other bit of news we were given is that the quick test, or slide smear, of the bronchoscopy that showed fungal elements was not from the left lung. Somehow the lab got it mixed up and it is actually from the chest tube drainage. I was left with mixed emotions - relieved, but a little anxious. How could a mistake like that be made? Scary. All other tests from the left lung now are negative - no fungus, no bacteria, nothing.

John and I want the docs to be even more diligent about fighting this thing in her right lung. She is on the highest antifungal coverage one can get, and it seems that her body has responded. At this point, we've been able to keep the infection at bay. I pray very hard that it continues.

Brianna's progress over the past four days has surpassed the doctors expectations. She has come off the noriepinephrine and the dopamine for her blood pressure, they have reduced her diuretic IV drips because she was 2 liters negative just yesterday and even more the day before, and they have come down on the ventilator settings. She has even started sprinting. This is when they set the ventilator to give her only 6 breaths a minute for an hour. Brianna has to breathe more than that - we average about 15 to 20 a minute. It's a way to strengthen her muscles and see how she does. This is done four times during a 24 hour period, and then the next day or so they increase the time to two hours four times a day.

Her first sprint was great. She averaged 25 breaths and held her oxygen saturation at 99 percent. We were so pleased. The doctors even talked about extubation possibly in the coming week. But as always, they don't want us to get too excited. We have to take one day at a time and her kidneys are still under much duress.

Her creatnine hit a high of 2.6 (normal is 0.7 or 0.8) and her urea nitrogen (BUN) was 168 (normal is something less than 40 I think). This is a big sign that her body is having trouble clearing fluids through the kidneys. But over the past few days, the numbers have headed in the right direction. All have come down to yesterday's 2.2 creatnine and 144 BUN. But as long as these numbers remain this high, she is still in danger of her kidneys just stopping. Again, another prayer of ours is that the numbers keep coming down.

Our baby girl is getting better, but I am learning the hard way that we have to take one day at a time. She has had a good few days and my hope is that they continue.

Until we are home and Brianna is completely healed, I will continue to say thank you to all our friends new and old who send their love, prayers and good thoughts. Our family have been so supportive, and we really couldn't do this without them. Also, I want to acknowledge our dear friend Sharon Jones who heads Brianna's boosters. She kindly came to visit me on Tuesday. But every week, she works on finding volunteers to help our family. Thank you Sharon!

I had no idea how long this journey would be and I still have no idea how much more road we need to travel before Brianna comes home and is completely healed. Your thoughts and prayers and positive energy are still needed, because I have come to realize that the road ahead will have bumps. I just pray they are small compared to what we've had to travel in the past month and a half, on day 109 in the hospital.

More News and A Rough Couple of Days

2007-05-27T20:20:00.000-07:00

Much has happened in the past couple of days. Every day I spend here seems like months. Sometimes I have a hard time seeing past the door of her ICU room, so I thought a picture of the Eiffel Tower would be a great reminder for me, along with all of your wonderful comments. We WILL be going to Paris, and Brianna will be the Parisian Princess while we're there, thanks to Make-A-Wish.

Friday, we spoke with the doctors about the phone call I had received about the fungal infection. They believe it was a contaminated sample, because we know she has a fungal infection in the right lung and the bronchoscopy brush that was done was not a protected one. In other words, the little brush passed through the area of the lungs shared by both, so if any particles of fungus was there from the right lung, the scope would pass through it. It still scares the heck out of me.

Also, Dr. Cornfield, the pulmonologist following us and the attending PICU doctor this week (thank God), said he was not surprised that fungus had been found in her lung. He said we know she has it and we're treating it. He said he had to break through a big blob of something when he went down with the scope and then when he came back up it was gone- probably blown down into her lung with the pressure of the ventilator. So it could have been from that. Plus, we can't tell on the slide smears if it's active or dead fungal cells.

When he looked at the CT scan of her lungs, he said he was pleasantly surprised how good they look. Yes, there were some areas of dead tissue on the right side, and some infection on the right, but overall they looked pretty good for sick lungs. He said the new infection on the left didn't look like fungus, but more like a bacterial infection. Of course, the radiologist would have to tell us for certain. (They have to qualify everything.) Well, bacteria was confirmed.

One of her cultures from the chest tube drainage came back with an antibiotic resistent bacteria - Enterococcus. This is usually found in the intestines. When kids are in the hospital on antiobiotics for so long, this bacteria is being brewed to be resistent. And when it starts to emerge from the intestine and get into the blood stream or other area of the body weakened by previous infection, it sets up shop.

So without waiting for a postive culture, the doctors felt that it was time to try the big guns on the antiobiotics. So Friday, they gave her Linezolid, which kills antiobiotic resistent bacteria. After that, all Hell broke loose in her body.

A couples hours after the new antibiotic, they had given Brianna some Tylenol for a mild fever - actually it wasn't one, but they thought it would make her comfortable. Soon her temperature rose to 39 celcius (over 100) and she was burning up. Her blood pressure started to drop and she had to be put on Dopamine - which makes her heart race and blood pressure rise. That made her heart race to about 149 beats per minute, but her blood pressure still was not holding. It was running about 80/40 - low.

And so they decided to give Norepinephrine. Then her ventilator settings had to increased quite a bit, because her oxygen saturation kept falling. A little later, her temperature rose to 39.9 Cel, which is almost 104. They had to bring in a cooling blanket. Later in the night, her body temperature plummeted and they had to bring in a machine that supplies continuous warmth to a water blanket/mattress. My sweet girl had a really rough 24 hours.

What was happening was that once the antibiotic was given, it killed the bacteria. When the cells were obliterated, the toxins in the bacteria were let loose in her system causing all sorts of havoc. It's called a bacteria shower, and the doctor said it was sepsis.

If we were septic, we'd be pretty sick, maybe even hospitalized. But with Brianna, being immune suppressed, it was serious. I was an emotional wreck, even though the doctors told us that she would get worse before she got better. It's one thing to hear it, quite another to live it. John knew this was really rough for me and came and stayed with me.

Yesterday, we arrived to see that she was pretty stable. Dr. Cho is on this weekend for BMT. He is just not very good at being compassionate. Dr. Cornfield has taken a liking to us and has followed Brianna for the past two months. So he hugs me and takes his time to make me feel okay about her condition, however serious it may be. Also, he is so positive about getting her out of the ICU in the next few weeks.

So Dr. Cho's first report to us yesterday morning that multi-organ failure was in process with Brianna. He spent about 10 minutes with us basically saying nothing to us, except clarifying the term multi-organ failure. This is condition is what leads to death most of the time.

So after I cried for a while, we went to see the PICU team led by Dr. Cornfield. He told us she is no where near that kind of organ failure. I knew it wasn't as bad as Cho had described. We came away later feeling a little better, even though Brianna was truly very sick.

Late yesterday, we learned that a culture from the chest tube drainage grew the antibiotic resistent bacteria Enterocauccous. They also found Staph in her yellow leumen of her tunneled central line. So to say that we've had a heck of a time for the past two days is an understatement.

Thankfully, Brianna has had a pretty stable day today. The doctors have told us that we will most likely have to face another crisis before this very long journey is over. It may be her strained kidneys, because they are barely holding on. They have been pushed to the limit. So far, they continue to function and we are thankful for that.

Our hope and prayer is that we've seen the last of this nasty bacterial bug, and Brianna can continue to be weaned from the ventilator.

More Worries Over Bronchoscopy Results

2007-05-25T08:55:00.000-07:00

Brianna and her friend Troy were enjoying a night out at the movies. She would love to see the next Pirates movie coming out, and will be upset to learn that Survivor and Amerian Idol have ended before she could see the finales. We have taped them for her, and I know she will be happy to see who won both.

Yesterday, we had a very anxious morning waiting for the docs to change her to a conventional ventilator. It was supposed to happen at 8 am, but as with most things here, hospital time isn't the same as real time. I found the attending PICU doctor and asked what time Brianna would be switched, since it was already 8:30 am. It was decided to make the change at 9:30 during Brianna's rounds time.

After waiting anxiously outside the PICU, the bone marrow team found us and said she did beautifully. They started her at higher pressures and lots of oxygen, and were able to wean her down quite quickly. It was so obvious she was ready for this change.

When my mom and I walked into her room, it was so peaceful and amazingly quiet - except for the constant, but reassuring beeping of her heart rate on the monitor. The oscillator was extremely loud. It was like having a small engine in the room with a very loud piston, pumping hard and fast. I couldn't believe that the conventional ventilator was on! I also thought it would sound like the heavy breathing Darth Vadar made in Star Wars. Not so. Brianna finally is able to get the rest she needs.

Several people, from the massage therapist to one of the nurses, commented on how much more comfortable Brianna seemed. She was breathing more naturally with the conventional ventilator, didn't have to be paralyzed and did not need as much extra sedation as before. With the osciallator, I don't know anyone who would like to have their chest constantly bouncing from 300 to 600 times a minute to breathe.

We were so pleased with her progress and how well she took to the new ventilator. As the day progressed, it was obvious they could wean her a bit more on the settings. Originally, they left the oscillator in her room just in case she didn't do well. By 1 pm, they knew she didn't need it, and the oscillator was removed.

Also, they decided to do the much-needed CT scans the next morning. They wanted to wait about 24 hours before putting her through that. Well that plan changed when they saw how much better she was doing as the day continued. So Brianna was taken to the CT scanner about 8 pm last night. We couldn't go with her so we went to grab something to eat. When we got back around 9 pm, Brianna was still gone. So we waited and finally heard them coming down the hall pushing Brianna's bed and all her equipment and her loaded IV pole.

The doctor said she did very well and actually got a little angry with them for moving her so much. Brianna gave them some raised eyebrows and grimaces, which told them she wasn't happy. They gave her a little more pain meds and sedation to help her through it. The nurse told us that the actual scan took about three minutes. It was the 45 minutes of preparation beforehand and the 45 minutes or more afterward to untangle lines that took so long.

We could see though that even though the bed was disheveled and her IVs needed to be organized, Brianna was doing really well. So we were content to leave about 9:30 pm and head for the hotel. I called John to let him know that things went well. Soon after was when the bomb was dropped.

About 10 pm, I received a call from Dr. Franzon, the attending PICU doc, that one of Brianna's "quick" tests came back positive from her bronchoscopy. The quick test is when they take some of the fluid they get from the lung, put it on a slide and look at the smear to see if they can identify any of the cells. The bronch was done on Wedsnesday and up to that point everything had been negative. Again, they were looking for bacteria, a virus or fungus. The call was to inform me they found fungal cells on the slide smear, but that they had to continue to grow out the culture to see what it would produce. These are from her "good" left lung.

To say that all the gains we had made that day were completely forgotten is an understatment. It was as if the day hadn't happened and I was punched in the stomach. How could there be fungal cells in the opposite lung when she's on all these high-powered antifungals? All the doctors felt sure what was affecting her lungs now couldn't be fungus. I fell apart after the call, and continue to feel that this is all surreal. So, we wait for the doctors to come speak to us after rounds this morning. And here I am AGAIN asking why can't we get a break?

When we walked into Brianna's room this morning, they had weaned her even more on the ventilator. She's down to 45 percent oxygen - room air is 20 percent - so we're a little closer. They were also able to come down on the pressure and the number of breaths per minute, and her oxygen saturation is hovering around 94. So that pleases me that she seems to be getting better. But from the sound of the preliminary test results, I just don't know what to expect.

John left work this morning and is here at the hospital to find out what is going on and what the docs are going to do about it. From everything we've learned, fungus is aggressive and loves to mangle lung tissue. We can't afford that now. My mom is still here lending support at the hospital. My dad and Trevor are waiting to hear from us. All night I kept waking up, thinking this was all a bad dream and not real. Then I'd realize where I was and that my daughter is still in ICU and may be facing another fungal infection.

Yesterday, Brianna received a beautiful package of vintage looking tags and note cards with images of Paris. It was signed so sweetly with hugs and kisses to her, but it was anonymous. Thank you our secret angel. They are beautiful, with strking ribbons, pretty papers, sparkling crystals and lots of images of the Eiffel Tower. Getting to Paris with Brianna and our family was beginning to be very real for me, especially with the progress made yesterday. Seeing her extubated and on 2 North in the next two weeks was looking like a real possibility. But now my mind is cloudy again.

We are all remaining positive, but my anxeity has heightened ten-fold. We wait for the doctors to determine how real this new threat is to her lungs and to reveal their plans for getting her better. Or, better yet, to hear that this was a false positive and that nothing will grow in the culture. The CT scans of her lungs will give them more clues as to what is really going on in her lungs. No matter, it's obvious there is a real battle going on within Brianna and we continue to pray that she has the strength to stand her ground and fight.

Another Delay in Brianna's Road to Wellness

2007-05-22T15:53:00.000-07:00

Brianna (right) is fooling around with her friend Chelsea, who sent these photos to me along with a very sweet comment on the blog. I can't help but cry when I see her having fun with her dear friend, and pray for that day to come again.

Brianna was supposed to be put on a conventional ventilator, but that did not happen. When my mom and I left the hospital yesterday around 6:30 pm, Brianna's ventilator settings were 19 on the MAP, her oxygen was 50 percent and her oxygen saturation was 95. This morning when we walked into the room, her MAP was back up to 20, the oxygen they were giving was 60 percent and her O2 saturation dropped to 89. I was not expecting this at all.

Also, last night they had to put a new naso-gastro tube up through Brianna's nose to her stomach because the one she had got clogged up with a pill they had ground down. When they put the medication in the tube, it turned to a thick gel and wouldn't move. About this time, Brianna started to "wake up" and became very agitated. When she wakes up and is not on the paralytic, she fights the osciallating ventilator. It's not a natural way of breathing, and if she tries to breathe against it, her oxygen saturation drops. We watched it happen a few days ago when her O2 saturation went from 98 to 89 because she was moving her chest up and down and trying to breathe normally.

So why all the drop in her overall lung status? This morning the doctors think it's too much fluid over the past four days, a possible bacterial infection and her will to breathe against the oscillator. (Remember, the oscillator provides 600 tiny breaths a minute sort of like hyper ventilating. Obviously, much different than the regular rise and fall of the chest about 20 times average per minute.)

Over the last few days they allowed her to have a little more fluid to make her kidneys better. Her kidneys started to object on Friday, when her creatnine and Urea Nitrogen (BUN) crept up to a high level. Those numbers indicate how well the kidneys are functioning and when those numbers are high, it means the kidneys are not passing fluid waste as well as they should. It also means that many of the drugs that can damage the kidneys are in her system longer and at higher levels.

The way to heal the kidneys is to give them more fluid. Brianna's been on a Lasix drip ever since she's been in the PICU, and they added another diuretic every 12 hours. To say she was dry is an understatment. Almost every day she would wind up negative on her fluid balance.

During the past four days, she was 500 milliliters positive every day. So over that time, she was two liters positive. Every day I'd walk in and ask how her fluid balance was for the 24-hour period and they'd tell me she was 500 positive, I'd wonder when it would start to affect her lungs. Supposedly, that time came this morning.

In addition, the doctors still feel that she got some sort of ventilator related bacterial infection. They've given her three new antibiotics on top of the Vancomyecin, which kills staph infections. The hope is that these drugs combined with more diuretics should clear her lungs more and get her back on track to a conventional ventilator.

I feel like there is a recorder in my head and it keeps replaying some of these same conversations I've had with the doctors. Before we got to the PICU, Brianna's x-ray started to look bad and the doctors thought it was too much fluid. But that wasn't it and she continued to worsen until she needed to go to the PICU.

They have been testing her C-reactive protein levels in her blood, which are a measure of inflammation in the body. It was 19 on Saturday and has decreased to 16 today. The doctors take this as a sign that whatever she has, it's getting better. But I continue to ask why has she declined in her respiratory status?

I know I have to be thankful for the major gains Brianna has made. And she has made them - going from 36 on the amount of pressure being used to force oxygen into her lungs down to 20 now. But I can't help but be a little gun shy about any signs that she's having more trouble with her lungs. And here we are again with the doctors not really knowing what is causing this and her condition isn't getting better.

I also realize that maybe I've just been here too long. It is now 100 days of hospitalization and one-third of that has been spent with Brianna in the PICU. I think my stamina and strength are almost depleted and I'm wallowing in doubt, fear and anxiety.

I know our call for prayers has been long and loud, but please continue. This has been so difficult for us, and I'm sure it's been difficult for you to read every other day too. And I'm afraid the journey will continue to be long and bumpy. But, we are grateful to all of you who continue to lift us up with your comments to the blog and emails. We are blessed with family, friends and those I have not met - friends of friends - who have sent their well wishes and prayers. We are blessed to have so many people cheering for us.

I pray that tomorrow will bring better news abour her x-rays.

Possible New Infection Shows on X-Ray

2007-05-21T09:38:00.000-07:00

Here is Brianna so full of life and goofing around with one of her friends. I've shown many pictures of her to the nurses, so she becomes a real person under all the sedation, tubes and beeping.

We had our patient care meeting on Thursday and it went well. Dr. Cornfield, who is in charge of the PICU and is also a pulmonologist, continues to follow Brianna's case whether he's the attending physician on duty or not. We are so grateful to him for all his expertise. But in the meeting he said that she's doing well considering all that she has going on. But he said there were some storm clouds on the horizon, namely her x-ray from that morning.

The doctors said it looked worse than the one taken on Tuesday. On Sunday, it still wasn't as clear as it was, but it hasn't gotten worse. We're in the same holding pattern and it scares the heck out of me. This is how her whole lung problem began before she had to go to the ICU.

Basically, the x-ray shows an area in the middle of her left lung (the good lung) that is like a focused cloudy area. Lung x-rays should be black where there is air. If there is white, that means either collapse or inflammation from an infection. When she first got to the PICU some four weeks ago, her lung area looked more cloudy all over the lungs not just in one specific part. They called it more of a diffuse pattern, rather than a focal one. On the recent x-ray, they seem to think it may be some type of antibiotic resistent bacteria. So they've switched her antibiotics in hopes it may clear up.

The other theory about her recent x-ray is that some of the white-ish areas are actually collapse. The MAP was turned back up to 20 on Friday, after having been lowered to 15 on Tuesday. Brianna is off the paralytic, and they doctors decided to go up on the sedation, because a MAP of 20 can be uncomfortable and not natural. She did well on the higher settings and in fact her oxgenation was doing really well. Her oxgen saturation jumped up to 98 and they had even turned down both the amount of oxygen they were giving to 55 percent and the amount of nitric oxide to 1 percent. Even though her x-ray was not looking great, clinically she was doing really well.

Her x-ray yesterday didn't look worse, which is a good thing - at least that is what they tell me. Part of her lung may have experienced some collapse because one of the areas in question on the x-ray that was white is now black. However, it wasn't part of the central focal point area. So we continue to wait. My concern is at what point do we wait long enough, and yet not too long before they decide to do a bronchoscopy. They say we're not there yet. Plus, doing a bronchoscopy has its risks.

If you remember, we got down to 15. It may have been too low to continue to keep her lungs expanded. Add the fact that she has a fistula, or hole in her right lung, and the pressure may have even been lower than that. When the pressure gets to 16 or 18 on the mean airway pressure (MAP), a patient is usually switched to a conventional ventilator. The plan remains the same, at least for now. She will be switched to a conventional today.

I'm waiting for the doctors to speak to me after rounds. That's when they all get together and discuss Brianna's current condition and what needs to be done to get her well. Every morning of everyday, we meet with the doctors in the mid-morning to go over what will be done and how she's doing.

Sorry it's been a while, but much has been happening. The emotional roller coaster continues with her good days and not so good ones. Thank you each and everyone of you for your cards, prayers and well wishes. When Brianna is well, I'd love to throw a huge party to thank all of you who keep us in your daily thoughts and prayers and for all who have helped our family.

God bless....Iva

Weaning Continues and Anxiety Increases

2007-05-17T14:39:00.000-07:00

Another picture that Brianna took of herself. I love all these little poses. This photo really made me think about my dad and how he teases Brianna by calling her Angelina Jolie. In this picture I can really see the resemblance.

Brianna continues to stay strong. She has been through so much, I cannot even imagine where she is getting her strength and courage. All I can say is your prayers are helping. She is now down to 15 on the mean airway pressure (MAP) and they have begun the process of weaning her off the nitric oxide. This gas allows the oxygen to bind to the red blood cells in the lungs, providing better oxygenation. She has been at 10 percent for a long time and they have weaned her down to one percent in the last two days. It is supposed to be one of the harder things to be weaned from.

She is holding her own, but is certainly not where she should be as far as her oxygen saturation. A small sensor on the tip of her finger measures the amount of oxygen getting to the extremeties. You and I would run about 97 or 98. At this point, she's at 91 and they've had to increase the amount of oxygen she's getting through the ventilatotor to 75 percent. Remember, anything over 60% for a length of time can be toxic to the lungs. So to say my anxiety level is high is an understatement.

Today is the first day since my cold began Saturday that I've been able to spend some time in her room without having to limit it to 10 minutes. I sit in the room and obsess over the numbers blinking on the monitor just above her bed. It's very easy to do when they stare you in the face in bright flourescent colors and beep with every beat of her heart, change of her blood pressure and change in her O2 saturation. I try not to obsess, and the only way I can really cope is by leaving and either sitting outside in the sun or on one of the couches in the waiting areas in the hospital hallways. Just getting busy helps too, like exercising her legs and flexing her feet so she won't lose too much range of motion in her limbs.

I also know it takes her some time to adjust to every little change on her ventilator settings. However, as long as she is in the ICU I'm going to have a hard time.

Last week, I met with another mother whose teenage son had a bone marrow transplant late last year and who had many complications. It's funny how she and I both shared similar experiences with certain residents and doctors - good and bad. It's also good to know that even though they were in the hospital for five months, he is now home, still having to take lots of medications, but getting better.

She was the one who asked about Brianna's transplant. Funny how that has taken a back seast now that she's in the ICU. So speaking of her bone marrow transplant, her white count today was 4.8, her hemoglobin was 11 and she's getting a unit of platelets a day because she's undergoing so much in the ICU.

We have another patient care meeting today and I'm going to mention a few things. Most importantly we want to know the plan even though it all depends on Brianna. Hopefully CT scans will be able to happen soon after she's on the conventional ventilator so we can see what's going on in her lungs.

Another reason for our anxiety is her medical insurance. Something we don't think about is the lifetime limit. For Brianna, it was $2 million and we thought that would easily cover her transplant. At this point the charges are more than $3 million, but of course that doesn't reflect the negotiated rates which are often half. So about two weeks ago I got a call from the hospital's financial counselor who said she's concerned we're going to max out the insurance benefit. She was right. We're getting it lined up, but it's one more stress that we all don't need.

Please continue your prayers for us and send us more healing thoughts. We still have a ways to go before she's off the ventiltor all together. And I won't feel comfortable until I know that her lungs are healed and she doesn't need it anymore. Actually, I won't feel comfortable until she's home with us, all this transplant stuff is behind us and she's living her life as a young adult.

Thank you for all your prayers and lovely emails. We need them so.

More Weaning from the Ventilator

2007-05-15T10:08:00.000-07:00

Even though Brianna was to have a quiet weekend of rest, it was a little hectic. She continued at 20 on the ventilator's mean air pressure (MAP), and struggled a bit to keep the carbon dioxide at a normal level. But she managed. However, when she was turned on her stomach Saturday, she must have gotten naucous.

The doctors decided that she wasn't tolerating the naso-gastro tube feeding of a nutritional fluid, so they stopped the feeding. Then, the nurses found that she had thrown up a bit when suctioning the tube. The doctors then decided to put in a tube that bypasses the stomach and sits in the small intestine. They tried to put it in and they had a difficult time. Two x-rays were taken to see if it was in place and it wasn't. So poor Brianna went through the procedure and they had to stop. She got tears in her eyes while they were putting the new tube up through her nose and then down to her GI tract even though she was sedated. Thankfully, they gave her a little more medication.

My mom and dad stayed and made sure Brianna was kept comfortable all weekend. They did a great job alerting the nurses that Brianna had tears. I am so fortunate to have such supportive parents. They sat with Brianna's all weekend, so that I could go home and spend some time with Trevor and John for Mother's Day. Here's a picture of our handsome son. I miss him so much when I'm away for so long.

It was very nice to be home for most of Saturday and Sunday. I was able to leave the hospital Saturday late morning, stop by the store to buy a couple more pair of jeans (I got down to one that fit me okay because I just haven't shopped much), and then headed home. We saw a very funny movie Saturday night, Hot Fuzz. It was part comedy and part murder mystery and had such a great twist. There are a few gross parts, so I wouldn't take little kids. It is an English movie and very different than what's out there. It was a nice escape. Leaving the theater I thought about Brianna.

Going home was bittersweet. I kept thinking about Brianna, wondering how she was doing and missing her. We all thought about her while at home. I was able to grab a few of my art supplies and a journal to try to do a little journaling while I wait for her lungs to recover. And I thought about all those Mothers out there who are celebrating the day with their children and those like us who cannot for the time being.

But over the weekend, I felt a cold coming on. My throat was sore and I was sneezing. Everyone has to wear a mask while in her room. We just can't take any chances. But John and I were with her Sunday night and then left. I made sure I used the hand sanitizer a lot while there. But on Monday morning, our doctor said I shouldn't go in her room. I pray that the time I spent with her on Sunday night didn't cause any harm. She can't afford to catch anything.

Yesterday was a little hard for me, since I couldn't be in the room with her. But I know it was for a good reason. I called the nurse several times throughout the day and talked with our nurse practitioner and the doctors in the morning. Then I left the hospital, just because I didn't want to get anyone else sick in the hospital. I spent the day in my hotel room, working on our hospital bills and talking with the insurance company.

Brianna made more progress yesterday. She got down to 18 on the MAP and now the doctors want her to get down to 16 on the MAP before switching ventilators. Again, this is a PICU attending physician thing. Which ever one is on will determine how far we go down on the MAP. This week, it's Dr. Cornfield who we really respect. He's the medical director of the PICU and a pulmonologist and did the very first bronchoscopy Brianna had. So he's followed us for more than a month and we have asked for his opinion on all that has happened with her lungs.

This morning my cold symptoms have subsided, but I still feel it. So I can be in her room for 10 minutes at a time, with a double mask and after washing my hands up to my elbows. Our wonderful primary care nurse Presley is there today and I know Brianna is in good hands. She is such a great nurse and we feel so lucky to have gotten her early on and for her to sign on as Brianna's primary. Brianna is now down to 17 on the MAP, so every day she continus to be weaned. I thank God for this.

We still have a long way to go to get Brianna well though. Now we will see when she will be put on a conventional ventilator and then be able to be moved for CT scans on her right lung. Another Patient Care Meeting is scheduled for this Thrusday and we'll see if the doctors think it's time to get surgeons involved. Our hope and prayer now is that Brianna won't have to go through another traumatic lung surgery to fix the hole in her lung and the remaining fungal infection. We suspect she may though. This would mean at least another three weeks in the pediatric ICU.

I talk to Brianna and tell her that this is her marathon and she's winning so far. I tell her that she is doing a great job and to continue fighting. We are waiting for her and are here for her, so stay strong. I tell her she can do this and not to give up the fight.

Your prayers and wishes of healing, courage and strength have helped Brianna and our family get through this. Tomorrow will be week 12 after her transplant, which means we will have been here for 94 days. We all can't believe it, and yet it seems like it has been a lifetime. Please continue to pray and send positive thoughts. We haven't reached our destination yet and it will be a while before we do.

Two More Points Needed

2007-05-11T09:13:00.000-07:00

I thought you might enjoy seeing Brianna with her friends. She loves to have fun and dress up for Halloween. (I wonder where she got that from?) Here she is with (from left) Chelsea, Nina, and Troy, oh, and our dog Winston. Brianna made her and Chelsea's space helmets from paper mache....imagine that. (For those of you who don't know, I use lots of paper mache in my art.) I miss her smiling face so much.

In my last post, the doctors talked about changing her to a conventional ventilator when the mean air pressure (MAP) was down to 24. After some more discussion, they decided it would be better to wait until it got down to 18. This morning we're at 20, so just a few more points to go. If it doesn't happen today, they will wait until Monday. There are a lot more people around during the week, even though the ICU is well-staffed 24/7.

They have been turning her usually every 24 hours from her stomach to her back and vice versa. She does better with her oxygenation and not so well with her CO2 when she's on her stomach, and then does better with her CO2 and okay with her oxygenation when she's on her back. So this morning while on her stomach for the past 2 days, her CO2 is higher, which affects the pH balance of her body.

Most of us are balanced, but some run alkaline or acidic. If CO2 is not released enough in your lungs it turns into acid. When too much builds up, it starts to damage the organs. Brianna is only slightly acidic and her body has made some adjustments to accomodate for the change in pH. So I will be much happier when she is turned onto her back.

We also had another patient care meeting yesterday that went well. We met with the attending ICU doctor, our bone marrow transplant doctor and nurse pratitioner, Lizzie, and our social worker, Darci. What was discussed was moving her to a conventional ventilator in order to get better diagnostic pictures of her right lung, ultimately to heal her completely.

The difficulty with Brianna's ventilation all stems from the original fungal infection in her right lung. It seems a portion of it has possibly died and now her body is forming scar tissue around it to protect the body from it. But her lung has a hole in it, which makes the pressure being used to ventilate her a little uncertain, or in other words, they're not sure how accurate the numbers are on the ventilator because air is escaping through the hole.

CT scans are needed to better see what is going on in her right lung. And she can't be moved for those scans until she's on a conventional ventilator. So next week, we're hoping that she can be weaned down to 18. They're going to let her rest a bit this weekend, which also makes sense to us. You make progress even when you rest.

Dr. Agarwal, our BMT doctor, asked how I was doing. I had a little bit of an emotional breakdown this morning, just because I miss my daughter. I know she is here, but I sit in her room and think I see her sitting up to say something. But this weekend is also Mother's Day. My dear parents offered to stay at the hospital in order for me to be home with Trevor and John. So we will most likely split our day on Sunday to be with Trevor and then be with Brianna. I thank God that I will be able to celebrate with her. And I know that every day Brianna continues to fight, is another day closer to her getting completely healed.

I also want to show my mother how much she means to me and how supportive she has been and continues to be. I wish you all a Happy Mother's Day. Enjoy the time you have with your children and your parents, because each day is a gift.

Oh, and for those of you who would like to see the pictures of my visit with my PFATTie friends, you can see them on Sandy's blog: www.samiamcreations.blogspot.com. Thank you Sandy.

Big Decisions for Brianna this Week

2007-05-08T09:16:00.000-07:00

Like most teens today, Brianna loves playing with her camera and taking pictures of herself. Here's one she took before she was hospitalized. She wanted her hair cut and I think it looks so good this length. She's making progress, but in the meantime, I miss hearing her laugh and seeing her sparkling eyes.

She was turned on her back yesterday afternoon and it seems that this position has some problems. She has a hole in her right lung. It's hard to tell how big or where, but when she's on her back the ventilator settings seem to jump around a lot. It seems that the air is escaping through the hole and then out the chest tube. So that will be discussed in rounds today. We're at a point where if she can be weaned a couple more points down on the MAP (mean air pressure) she can go to a conventional ventilator or a dual ventilator. Some big changes are likely to take place in the next few days. Your positive thoughts and prayers for continual healing for Brianna and for insight for the doctors are appreciated.

Also, I want to thank the owner of the San Francisco Examiner, Philip Anshutz, for his generous offer of having a lung specialist from Denver come and review Brianna's history. John feels so honored to work for him and his company, and I am so grateful for his understanding and willingness to help get Brianna well. We think the doctors listened Dr. Zamora's advice and have been following it. Some of what he advised the doctors here, they had talked about early on, but Brianna was just too unstable. But he did provide some new insight that helped us. With the progress Brianna has made over the last two weeks she's been in the ICU, her lungs may be healed enough for less intensive ventilation.

My brother will come out today and stay for the next couple of days. John was able to come stay with me last night. I miss him and feel so safe and comforted when he's there. He is always there when I need him. My mom was here for the last couple days too, and my dad was here on Saturday. I feel lucky to have such wonderful, caring parents. My family has been so supportive and it will be nice to have my brother here with me. My cousin will be stopping by this afternoon as well. The last time we saw him, we were all at his wedding this past August in Lake Tahoe dancing some Serbian kolos and having a great time. Brianna wants to celebrate like that again, she said weeks ago.

In the next few days, there will be much change here and I will try to let you know as soon as I am able. My days start at 6:15 am, when I get up so that I can be at the hospital by 7:30 am when the nurses change. They work 12-hour shifts, from 7 am/pm to 7:30 pm/am. I get a chance to talk to the night nurse to see how things went and to talk to the day's nurse. Of course, I also am there to stroke my daughter's brow, massage her hands, legs and feet and move her limbs around a bit. Rounds are usually at 9:30 am and then the doctors come talk to me about 10 am. Then I am on the phone to tell John and the family of their report. Then I am in her room again trying to exercise her legs and feet.

I usually slip away for lunch and try to sit outside a bit, to write my blog, make phone calls or sneak in a nap. Then I'm back in her room moving her limbs around and talking to the nurses about how well Brianna's doing. I either stay until 7 pm until the night nurse comes on and I can talk with them for a couple of minutes or we leave around 5:30 for a bite to eat and return by 7:30 pm to talk with the night nurse until 8 pm. Then it's off to the hotel to try and relax, charge up our cell phones and computer and give Trevor a call to see how his day went. We usually get a call from our transplant doctor around 9 pm to let us know if there are any problems or if she's doing okay. Then we try to drift off to sleep and start all over again. They are long days and lately, I've been forgetting what day it is or how long we've really been at the hospital. Time has really stood still for us.

My God sister Melanie, her husband Alan and her son MIcheal have sent Brianna and Trevor gifts. They are such kind and loving people that we really think of as family. In fact, I grew up with Melanie and was so excited when she would stay with us or visit. I also want to say thank you for making this time for Brianna and Trevor a little less traumatic with your kindness. I am sending a big hug to you and look forward to the day when we are all celebrating Brianna's return home together.

So many of you have sent cards and gifts and I'm sorry if we haven't sent thank you's. I know you probably don't expect them, but I want you all to know they do not go unnoticed or unappreciated. Thank you, thank you. When this craziness is over and Brianna is well, I hope to recognize your giving spirit.

God bless...Iva

Second Opinion Brings Hope and Direction

2007-05-06T09:31:00.000-07:00

Late last week, my dear friends from far away came to visit us at the hospital. PFATTies Christy, Sandy and Kitty were so sweet in bringing gifts for Brianna and me. They suggested I show more photos of Brianna on the blog, so here's one I thought was sweet. We laughed, cried and shared, and then Kitty treated us to lunch at a local restaurant. I still can't believe they made the trip coming as far away as Oregon and Southern California, then onto Sacramento, and finally driving from there to Palo Alto. I am so glad they did.

Zinnie, another sweet PFATTie (remember, it stands for Primitive Folk Art Tea & Talk on eBay) couldn't make the drive out with them, but included the nicest snow globe gift of a fairy. Sarah, another artist in the group, sent along one of her beautiful collages with all sorts of fun items for Brianna. She will love all of them when she awakes from her long sleep in the ICU. Brianna had said to me before, "Mom, I'm so glad you have such nice friends."

These warm, caring women also told me that a collection has been started for Brianna in the group. As I told them, the words "thank you" just don't seem enough. But I am truly grateful and feel so blessed to have such kind, loving people in our lives. I hugged them for a long time.

My sister also came out and stayed with me for several days after their visit. It was nice having her here with me. She stayed by Brianna's bedside massaging her legs and feet and her back. We are trying to maintain a little of Brianna's range of motion, by bending her legs and flexing her feet and toes. You can imagine the physical therapy she will need to go through after this to get some of her strength and motor abilities back.

All of these visits enabled my parents to head back to their home in Reno for a few days to take care of some business. And it allowed John time to be home with Trevor and to take care of some things there.

I hadn't gotten to the blog in a few days because so much happened late in the week. In addition to the wonderful visits, John and I went through the process of deciding whether Brianna should get another central line. Before she got to the ICU, she had no reason to get an IV. She has a central line near her left clavicle. But when she had surgery the first time and now that she's in the ICU, two IVs were started in her arms. Week by week, each would go bad and couldn't be used. And even through she is making baby steps of progress, the nurses needed more access to her veins. Each time she is poked for another IV, there is a risk of infection. The last IV she had to have started was in her foot.

Each of these additional IVs are called peripheral IVs of PIVs. They differ from a central line in that they only feed into the peripheral veins. Her central line feeds into a large vein in near her heart. She couldn't undergo that procedure again, but there is a process known as a PICC line, or peripheral intravenous central cather. There were so many pros and cons to this procedure it really made me nervous, but in the long run I knew Brianna needed it.

A PICC line is a long catheter that goes into a vein just above the elbow and is pushed up along the vein until it sits in the large vein near her heart. The scary part was that an ultrasound helps locate the vein and then the catheter is fed by feel up and around her arm pit and onto the chest area. When it's complete, an x-ray is taken to ensure that is placed correctly. Most of the time this procedure is done under radiographic floroscopy, in other words, a camera an x-ray machine are used during the whole process to ensure not problems arise. But because Brianna can't be moved, and the mobile floroscopy machine wouldn't fit in her room, it couldn't be used. The PICC nurse assured us that it was done this way all the time, but you can imagine we still were very nervous. Thankfully, everything went well and she won't have to poked for more IV access.

Then on Friday, Philip Anshutz, who owns the newspaper that John works for called with a very generous offer of flying out a premiere pulmonologist to help consult on Brianna's case. This touched our hearts. The hospital that is known to be number one in the nation in pulmonology, or the study and care of lungs, is the National Jewish Hospital in Denver. So it was arranged that he would come out yesterday to review Brianna's care. What he had to say encouraged us, but also left us anxious.

Dr. Martin Zamora heads up the lung transplant unit at NJH. He reviewed Brianna's x-rays and CTs from back before her surgery up to the most recent x-ray that morning. He also talked with the ICU attending physician, asked us some questions and then discussed his thoughts.

Basically, he said that we're going to come to a point when she cannot be weaned off the ventilator. Right now, the ventilator is providing positive pressure in her chest. It's expanding her lungs and allowing the CO2 to escape. It's as if her lungs are two balloons that are continually being inflated and deflated, only super fast because it's oscillating.

She has a chest tube in her right lung area, and some of the pressure of the ventilator is escaping through a hole in her right lung. We suspected this hole some weeks ago. But what will happen is that air pressure will follow the path of least resistance. And what he fears will happen is that we will get to a point on the ventilator when the oxygen being pumped in will not entirely inflate her left good lung. Instead, it will escape out the chest tube and leave part of her lung collapsed.

His suggestion is to give her a few more days of weaning. Get her to a lower number on the pressure meter. Then, use two different ventilators for each lung, that way you can change the pressure in each according to their need. However, he said this can be a very risky procedure because she has to go off the current ventilator AND they need to intubate her again with two tubes. He warned us that she could go into cardiac arrest. Of course this was not what we wanted to hear. He said it would have to be done very quickly in order to keep her oxygen level high. Then you can get into a situation where the tubes are pointing to each other and setting each other off rather than pointing towards the lungs.

Our doctors talked about this dual ventilation early on, but said it was impossible because she was too unstable. That was when she first got to the ICU. Two weeks later, she is at 28 on the MAP, or mean air pressure. If she can be weaned down to 24, this could most likely be a little less risky. He did tell us the fact that she's made progress going from 36 on the MAP down to 28 is good, and he's optimistic that she will come through. She young, strong and her organs are function as they should, except obvioulsy, her lungs. He also said that the docs here are doing exactly what he would do in this case. It's always nice to hear that from a specialist on the outside.

His consult gave us some more insight, but I feel like we're coming to a crossroads again and they always scare me. I'm praying that her progress continues until she is at a safer level before undergoing such a procedure. In fact, she may not have to undergo it at all. But with what Brianna's dealing with in her right lung, it looks like we will have to go through with this at some point. And the sooner she is out of the ICU the better. Her skin is holding up, but one of her ears is getting pretty badly blistered from laying on it a lot. They're looking at ways of correcting this as well.

Please continue to pray for us and for Brianna's lungs to heal. Many of you have sent cards to her in our old room, but now we are in room 2513 in the PICU. I have not opened some of these, so that she and I can open them together. I appreciate all of you who have sent them. Again, we pray not only for Brianna's total healing, but for the doctors and all her medical care team to know just what should be done to get her well.

Baby Steps Continue But Long Journey Still Ahead

2007-05-02T16:41:00.001-07:00

Brianna continues to make baby steps of progress as we enter our second week in the ICU. It's so scary though, all the things that need to work in order to get her well.

And as I sit in her room today, her blood pressure is dropping and the monitor alarm keeps beeping off. They wanted her fluid balance in the negative - meaning really dehydrated - and they did that last night. She was negative a liter and a half over the last 24 hours. This was a good thing for her. The resident physician who came in to check on her due to her dropping blood pressure, said that not having enough circulating fluid can cause your blood pressure to drop. Hers was going from 101/60 down to 81/54 within a few seconds. She was going to get a unit of platelets so he said to give it to her now rather than later to add more volume to her system.

Now the occupational therapist is here to work with the muscles of her legs and arms. Because she hasn't used them, all her muscles have atrophied. Her poor legs are so skinny and she really doesn't have any calf muslce. Again, it will be a long recovery just from being in the ICU.

We all take for granted the fine balance our bodies maintain in order to work properly. Also, because Brianna's now been immobile and in fact purposely paralyzed for more than a week, her skin is starting to break down. Pressure points like her ears, skull, pelvic bones, shoulder bones, knees - are all areas that are in contact with the bed all the time and are getting little sores and blisters. So we're having to put gel packs under these areas, and trying to off-load some of that pressure. Our bodies were meant to move around.

So far, our family has been really good about ensuring that I am not here alone during this time. John has stayed with me for most of the week and then my sister is flying out and will be staying with me for the next couple of days. My parents have come out and will come again, followed by my brother next week. And I am eager to see some of my friends from my eBay group Primitive Folk Art Tea and Talk (PFATT). They are flying out from Oregon and Southern California and then driving out from Sacramento, where another member lives. I will see them tomorrow. I am so utterly touched by their willingness to take the time and expense to come give me a supportive hug.

I'm sorry that I'm unable to update the blog everyday. I try to provide a little something, but some days are too draining or too stressful. Although, my writings do help me work through all my feelings.

Also, I have heard that it can be difficult to post to the blog. If you don't have a Google account, you won't be able to. Sometimes even if you have one, the posting doesn't work all the time. But if you click on the little envelope at the end of the post, you can send me an email. It may not show up on the comments of the post, but I will get the email. Simply put in your name, and email address where it indicates. And instead of putting in a "friends" email address, put in my email address (iva@ivascreations.com). Then write your message to me and click send. Or, you can simply send me an email from your email program. I look forward to getting your emails so much.

Brianna's father has visited weekly, even though he lives in Southern California. He arranged for her to be blessed with a healing prayer today. I know many of you are doing the same, in thought and spirit, everyday. We are so grateful for all of you.

Week 1 - Wishing for Quicker Healing and Progress

2007-04-30T14:42:00.000-07:00

The doctors basically told us the same thing today. Brianna is stable, her organs are functioning well and her blood chemistry and blood gases (the amount of oxygen and CO2 in her blood) look good. This is all good news. My problem is that I want it all faster. I don't want her laying in a hospital ICU bed looking so critical and missing out on life around her. Of course I don't want her intubated either, and we know she must be sedated and paralyzed for the ventilator until her lungs heal. But the fact that she is not getting worse and has made baby steps of progress is encouraging they say. Baby steps, baby steps...how does one accept them when time has stopped and when life becomes day to day sometimes hour by hour, rather than week by week and month by month?

I am reminded though by John, my mother and my friend Colleen (who stayed with me today) that I need to be glad for all the positives. And I am. It's just our whole situation that makes me heartsick.

But today they decided to turn Brianna onto her back again and she has done well. The plan is to turn her every 24 hours, and it should not be as difficult on her lungs as the first time she was turned. It will also allow her lungs to continue to open in the hopes of gaining ground.

It is going to be a very slow process, and I am prepared to give up as many months or years as necessary to see her recover. It is hard on the whole family though. John stayed by Brianna's bedside all day yesterday so that I could go home, pet the dog, see Trevor, be in our house and do some "normal" things. I fiddled with the automatic sprinkler system with my dad and mom and tried to find a sprinkler head that is lost among the tall backyard grass. Trevor was all smiles and it was so nice to spend more time with him in just a few days.

It's strange to go home and have it not feel like home anymore. It's just a place to park my stuff for a few hours. In fact, about a week and a half ago, I had to write my address down on something and I had to stop and think of what it was. For a few minutes, I had forgotten my home address.

This has been a long journey so far, and it will continue to be one for many months to come. Brianna will be like Rip Van Winkle when she wakes, so much time will have passed. But we are content for now with the baby steps of progress she has made, no matter how small. She continues to get weekly leg massages from the therapists, and we play music for her, talk to her and touch her. And we are glad to think that she is dreaming and pain free while her lungs heal.

Each day is a gift.

Still No Idea What Caused Brianna's Lung Problems

2007-04-29T14:22:00.000-07:00

So far, the cultures taken from Brianna's bronchoscopy last Monday are negative. Nothing has grown from them, but they are allowing them another 4 to 7 days to be sure. A bacterial infection has been ruled out, so it's either viral or fungal. We pray it is not fungal. We may never know.

Brianna's weaning process plateaued on Friday. Her oxygen saturation - the amount of oxygen getting to her tissues - dropped slightly and it was obvious that no other areas of her lungs were going to open up. So on Saturday morning the new attending ICU doctor suggested turning her onto her stomach.

This process is known as "proning" and it will allow some of those air sacs, or alveoli, at the back of her lungs and behind her heart to open. Because she had been laying on her back for almost five days, the thinking is to turn her on her stomach to take pressure off the back of her lungs and let the ventilator open the passageways. This sounds so archaic and simple, but as my husband says, "They've been mending broken arms the same way for many years, it's just the process that has changed." And so it is with opening up those airways in someone with respiratory distress.

Last night the doctor called us at 10:30pm and our hearts dropped. But she was calling with news that turning Brianna may have helped. They had to go higher on the oxygen - up to 80% - and higher on the ventilator assistance. But they said that was to be expected until those air sacs popped open.

About 10 am this morning, their theory began to materialize. Her oxygen saturation increased even though they had gone down on the amount of oxygen given (66% - which is less toxic to the lungs). So we are hopeful this will continue to work. They plan on turning her everyday so she is on her back for 24 hours and then on her stomach. This will also help with her skin so that she doesn't get any sores from laying in one position too much. This is obviously not a cure though.

We are are convinced she had some sort of infection, but frustrated that no cause can be found. The doctors don't believe it's idiopathic pneumonia syndrome, or it's not a classic case of it, which relieves us. If it was, they said, she'd be getting worse. As I have said before, if a viral infection is the cause, it may take weeks and months before she will get better. That's because her immune system must still be surpressed due to the transplant. The type of white cells needed to fight an invading virus is a T-cell, and her new marrow won't produce those in any significant number for a while. We don't want any of the marrow donor's T-cells getting out of hand either because they could cause graft-versus-host disease.

So we are at a stand still and praying hard throughout the day that Brianna continues to fight and overcome this. We also pray that the doctors have the insight to know what should be done in order to cure her sick lungs. She's on all sorts of medications for the fungal infection she has in her right lung, and she's on antibiotics and an anti-viral for her left lung. It may just be a matter of time and we continue to pray that she holds out and stays strong while going through this. We are on the worst kind of emotional roller coster imaginable. We are thankful she is given a drug to sedate her and make her forget this, so she won't remember this time at all.

Thank you again for your love, support and prayers. Also, we appreciate all our friends who have asked their congregations to pray and who have requested prayers for the sick from the sisterhoods and brotherhoods of various churches. Our sweet 17-year-old Brianna desperately needs healing thoughts and prayers. And, finally, thank you for the Bible verses some of you have sent. They help give us strength and encouragement as we stumble along in the dark on this journey.

A Step Forward, A Step Back

2007-04-27T09:33:00.000-07:00

In talking with the doctors today, they said that they tried to continue to wean her off the ventilator, but her lungs said too much. So they had to back up a little. As they told us it might be two steps forward, one step back. This is just too hard for me to hear.

I asked how long can someone survive on a ventilator like this and one doctor said for months. I pray Brianna gets better before that. She already got a sore on the left side of her head from laying on that side for a day and a half. She has no skin break down anywhere else from laying all the time, and I want to make sure it stays that way.

I think some of the doctors are convinced that this is another fungal infection. My prayer is that it's not and it's something that can be treated. So far though, bacterial has been ruled out. We should know more today.

John and I are staying at the Ronald McDonald house, where the transplant kids and their parents stay after they're discharged. It seems like we're the only ones there, except one other family. I recognize the mother and her young son from our time on 2 north. I have to admit, that's hard to see them when I keep thinking that instead of Brianna and I there together, it's John and I and she's in the ICU.

Brianna's friends Chelsea and Nina have sent posts, and they are so sweet! Oh, how I wish Brianna was with you both at a concert or having fun. I read your notes to her and hope that she hears them and continues fighting. Also, Brianna never got a chance to thank her friend Troy for the great gifts he sent. Troy I know she loved everything you sent and laughed at the book you got about being a Republican millionaire. Thank you for brightening her day a week or so ago before all this.

Trevor is coming today, but I don't want him to see his sister in this state. It would haunt anyone for a very long time. I will try to spend some time with him, since we've been so consumed with getting Brianna well. My dad will be here again to talk to Brianna. John has been here in the mornings, going to work and then coming back around 5:30 pm. It's so hard for him to work while thinking about her.

Thank you all for your emails and posts. Pray very hard for us and keep sending your thoughts of well-being. Time is standing still it seems, and I want to fast forward to the day when Brianna is laughing and joking with us, while Winston our dog is by her side.

Baby Steps While Brianna Hangs On

2007-04-26T13:03:00.000-07:00

I am sitting near the foot of my daughter's bed in the pediatric ICU watching her. Although they assure me she is "sleeping" peacefully, it does not look like it. Her chest is palpitating up and down extremely fast, approximately 600 times per minute. Her eyes don't see us, but they are not fully closed and she has a gel that acts as tears in them. You cannot imagine the number of tubes that are trailing to her body and connected to her. This time is very different than when we were in the ICU before. This time she needs the ventilator to breath - before it was used in the hopes of opening up her right lung more.

Brianna has been in the Pediatric ICU (PICU) since Monday, and so far they've made a little progress towards getting her oxygen requirements under control. As I mentioned earlier, she's on an oscillating ventilator that pumps 600 times per minute little puffs into her lungs to keep all the tiny air sacs open at all times. The issue is making sure that the CO2 in her system gets expelled correctly. If it builds up in the body it turns to acid, and that is detrimental to the organs. So the PICU doctors are pleased that they've been able to decrease the amount of oxygen she's getting. She was at 75%, which is toxic to the lungs. Anything below 60% is much more tolerable by the body.

They were ultimately able to wean her down to 59% oxygen and they've been slowly weaning her down from the ventilator. Her MAP number (a figure that is calculated from several numbers) was initially at 35. They've moved down to 31. When you're at 15 you can go to a conventional ventilator, when the MAP is at 7 or 8, you can be extubated. We've got a little ways to go.

They keep telling us that we're making baby steps in the right direction. I am okay with that. But I want giant leaps in the right direction. At this rate, she'll be in the ICU for weeks. This is so hard to handle. Among all the things I worry about, is her skin. She has a small abrasion on the side of her head where she was laying. Your body was not meant to lay in bed all day so sores on pressure points become an issue.

Of course, our biggest fears come with the diagnosis of what is attacking her left lung. So far, all the "quick" tests from the bronchoscopy have come up negative for bacteria, the five most common viruses and fungal. But the docs say that it will take seveal days for the cultures to grow. That's when the actually put a tiny piece of what they took from her lung into a petri dish and let it grow. If nothing grows, then she doesn't have that. If something grows...you get the idea.

At this point, she is negative for one virus, CMV, and it looks like it's negative on the bacterial. The worst diagnosis would be fungal, because she's been on three antifungals for weeks. If fungus can still grow with all those medicines in her body, then nothing can stop it.

The worry is that this may be viral and if so, there is really no medicine that can be given to fight it. We have to wait until Brianna's body can build up T-cells, or antibodies, to the virus. This could take weeks, if at all, because she is immune suppressed. Her T-cells are purposely being kept at a minimum to ward of graft-versus-host disease (GVHD).

The doctors also tell us that we may never know what caused this. There are two other diagnoses- idiosyncratic pneumonia syndrome (a form of GVHD) and alluvial hemorrage - but neither fits just right and the treatment means steroids. We've been off steroids for a while because they suppress the white count and neutriphils which fight the fungal infection in her right lung.

"Be happy with baby steps," we are told. We are positive and yet we're still holding our breath until all the cultures come back negative.

I am playing soothing music for Brianna, and we are talking to her. My mom and dad have come to read to her and call her their little "teeny bopper," a pet name my dad came up with long ago for her. We hold her hand, rub her arms and feet. Although she is on a paralytic medicine (so she doesn't move for the oscillating ventilator), pain medication and two meds to keep her sedated, we are told that she can hear us. I know she is still in the body I see laying on the bed, and so I told her about American Idol for the past two nights.

On the door leaving the room, I've taped the picture (above) of her smiling face while being licked in the ear by our dog Winston. Everyone loves it and comments what a great picture. I put it there to remind everyone who cares for her and comes in to check her that there is a bubbly teenage girl inside waiting to get out and live life to the fullest again. We just pray that her lungs heal soon and she can be on her way again to recovery.

I cannot tell you how much all your emails mean to us. They are beautiful and speak of lots of prayers from people all over the country. Thank you to everyone. This is such a tiring ordeal and your warmth and caring thoughts and prayers carry us far.

Brianna Fights for her Life in Pediatric Intensive Care Unit

2007-04-24T08:37:00.000-07:00

Our dear sweet daughter is back in the pediatric ICU fighting to breathe. It is so hard to see her in such critical condition. Please send your prayers and thoughts of healing.

Yesterday morning it was apparent Brianna was not getting better. Her breathing was worse, and she was so weak, she could barely sit up. The doctors said she needed to go to the ICU, have the bronchoscopy to determine what is attacking her lung and be intubated. I knew that it had to be done, because the medicines they were giving her weren't working.

Before all this happened, we had planned for my mom to come and spend the day with us at the hospital. I thank God she was there for me and that John soon followed from work. Brianna sat up on the edge of her bed and leaned sideways on me, then my mom sat down and she leaned on her. It was difficult for her to talk with all the pressure of oxygen being blown into her mouth and nose, but she told us that when she's well she wants to go to a spa and get a massage and have her nails done. She also asked if I had been crying and I said yes, that it was so hard to see her like this. That was true, but I was actually very afraid of what might happen.

I kept positive thoughts in my mind and said prayers all night, but she still wasn't better. I knew that the ICU was the next step. She was moved from the 2North transplant floor to the ICU yesterday afternoon and they decided to intubate her immediately. she was having a very tough time with the oxygen supply they provided on the short trip between units. We waited anxiously, and while we waited, we had to pack up our stuff again and move it out of the room and into my car. When we got back the doctors came out and told us she was stable and not feeling any pain associated with having the tube down her throat and into her lungs.

About 5:30 pm, she had the bronchoscopy. They put a tiny camera, or scope, down into her left lung and the doctor immediately saw that the fluid in her lung was actually blood. She is bleeding inside her lungs. So he said he cleaned it up and when into the right lung to the area with the fungal infection. He said that as he went into one of her bronchial tubes you can see that it's collapsed and breaks up easily, that there is most likely some dead tissue there. This is not surprising to us because of the aspergillus. He was able to get lots of samples and took the directly to the lab. It will take 24 to 48 hours before we know what is attacking her lungs. In the meantime, Brianna has to continue fighting in order to stay with us.

We got a hotel and after seeing her in the ICU, I just fell apart. I thought I could handle it because we had been in the ICU before, but you never get used to seeing your child so critical. We went to the hotel to get some much needed rest. My mom stayed the night so John could go home and get clothes for the next few days. It may be weeks, we realize, but we're praying that it's only a few days that she'll be so critical.

Last night I didn't get any phone calls, so I assumed Brianna was stable. So when I got to her room the next morning, I saw that she's on a different kind of ventilator. Her chest was being pumped super fast by an oscillating ventilator that pushes air into her lungs and extracts it so fast, it's like 600 breaths a minute. It is used to better oxygenate the body. Even though she was getting 100 percent oxygen, her body was showing that it was only absorbing 60 percent. That began to drop around midnight, so they switched her to this new ventilator. And in order to do that, she has to have an IV drip of a drug that paralyzes her. Every so often the nurse has to check her to ensure that she is totally paralyzed in order for her lungs to accept this the ventilation cycles.

Today's nurse said I assume they called you to tell you of this change, and of course I got no call. I had made sure they had my cell phone number and wrote it down on a card and taped it to her chart, and yet I still got no call. This I would deal with in our Patient Care Meeting scheduled for 11 am today.

So I asked about pain management and the nurse said that she is on her usual pain medicine and the only way to tell if she's beginning to feel pain is to watch her vitals. If her blood pressure begins to increase, and her heart rate begins to increase, then she's starting to "wake up" and feel pain. Then she's given more pain medicine.

I have no words to express how I feel, how sad we are that she is in this position and that the pulmonologist just stopped by to say the odds are not with her, but that it's up to the individual to determine who survives. This is the hardest thing we've ever done, mentally and physically. You start second guessing yourself and saying if only we had done this sooner, or gone to this hospital instead or pushed the doctors to do this or that quicker.

We are desperate to have our daughter back and on the road to recovery. I dream of the days when Brianna and I shopping together, when the family is together enjoying a fire in the backyard and laughing. And I dream of the days when we will be shopping in Paris on her Make-A-Wish trip. Sometimes I think this isn't real and just a nightmare. Then I wake up and realize this is all real.

Please pray for Brianna's health, meditate on it, and keep her in your thoughts. As I said, we are desperate to have her back.

Pneumonia Causes Difficult Breathing, Machine Needed to Help

2007-04-22T10:52:00.000-07:00

It's been a week since Brianna's breathing became labored and it has still not gotten better. The doctors think she somehow got a viral infection that may have turned into a bacterial infection. She had some high grade fevers early in the week and once they switched around her antibiotics, her body responded with no more fevers. However, the lung x-rays showed lots of fluid build up inside both lungs, which made her breathing very difficult.

She was able to use a nasal canella (sp?), and then a non-rebreather mask with 20% oxygen added. But on Wednesday, it became apparent that wasn't enough. That's when she had to go on a positive air pressure machine (BiPap) - one step away from being intibated. Brianna's lungs are expanded with positive air pressure, in the hopes of keeping those lower lobes open and the air passageways cleared. The air movement can help also dry out her lungs.

Breathing on one of these is very cumbersome and it makes Brianna very anxious. She says she doesn't know when to breathe. What she mostly says is, "I just want to be normal." It's so hard to see her on this machine and struggling to get comfortable. She has no mobility with it either because it's hooked up to the oxygen in the room. You can only go so far. You can hear the air being forced into her and see her chest rise with it. It's a blast of air and a hole on the front of the mask is constantly blowing air out in front of her. These blasts of air make her very cold.

Yesterdays x-ray showed some improvement in her lung, but by the end of the night she was having trouble again. The reason is she was very dehyrdated, which is what they wanted, but then by the end of the 24 hour period, she had almost a liter of extra fluid on her. And where did it go? Her lungs. You can also see it in her ankles, which are very swollen, and other places. But she is still a lot leaner than she was a few days ago.

Thankfully, she's had no fevers for the past day and a half, a good sign. This whole ordeal really tires her out. When you're laboring to breathe it takes a toll on your energy. She heaves her chest just sitting. So she sleeps a lot.

Our anxiety level is high, as you can imagine. In transplant, the docs tell me, the lungs come first when treating patients. As Brianna knows, the feeling of not being able to catch your breath is scary. Another reason for my nervousness (other than this whole situation) is that I feel as confident with what's being done with her chest tube suction. The tube drains to an enclosed collection system to avoid infection. But, no one seems to know much about the system and the suction level settings. Add the fact that she's on the BiPap with all this pressure being pumped into her lungs and it really complicates it.

The daytime, Monday through Friday doctors are confident, and really don't ask questions about it. If they have one, the contact the right person. But at night and on the weekends, we get all residents and nurses asking people in other departments about the settings and how much suction should it be on and what about the water level in the collection system and the amount of bubbling it makes, and so on. Then residents come in saying we need chest x-rays to make sure she doesn't have air leaking back into the lung from her chest tube. It's a horrible experience for Brianna and for me to manage and watch. Several times I've had to demand that they call our daytime nurse pratitioner before they do something and have requested they call the cardiovascular ICU doctor to come in to ensure everything is set up right. We've had the thoracic surgeons tell me one thing, nurses who've dealt with these tell us another thing and then the CV ICU docs tell us something else. And this is Stanford's children's hospital! It's our daughter's right lung they're fooling with here, and I want to feel like it's being taking care of with kidd gloves!

Brianna's white count is still good at 7.4, but her platelets and red blood cells still don't seem to have come in. Or at least if they have, it's so slight that it's hard to notice. The chicken pox virus is clearing, and they had switched her to the pill form of treatment. However, she got several more red dots yesterday which meant she had to go on the IV fluid type again. That's a lot of fluid to add - a lot of fluid means wetter lungs - thus difficulty breathing. This could be part of the problem with her lungs worsening last night, after a Saturday morning x-ray that showed the lungs clearing more. Two steps forward, one step back.

I continue to send postive thoughts to Brianna. At night, I lay on my bed only 6 feet from her and pray for healing and send thoughts of clear lungs. I am trying to be a lightening rod for good and healing. We take one day at a time, and I know we're turning a corner soon for her getting out of the hospital and on her way back to being a normal teenage girl. That's what I have to believe and it will come true.

At 7:30 pm, John picked up my dear friend Alissa from the airport earlier in the week and drove her to us here. She came from Memphis and visited me for the past several days. It was so nice having someone around during the day to talk to about the ups and downs of this. She used to be a nurse, so she is a very caring person and told me stories about how she'd help her patients get well. Mostly she listened, hugged me, helped me with Brianna and watched our typical day. She brought some beautiful gifts for Brianna and Michael, her son who is the same age as Brianna, gave her a card and bought Trevor a skateboarding t-shirt. Brianna asked her if we could visit her in Memphis - we used to live right across the street. She said she wants to sit by her pool in their beautiful backyard. Alissa of course invited us for anytime and for as long as we want. I have some amazing friends. We went to dinner several times and made a toast to the day when we all will be lounging by their pool and our only worry is what to have for lunch.

Another Setback: Why Can't We Get a Break?

2007-04-17T07:59:00.000-07:00

Brianna had a good day Saturday and visited with Trevor, John and me. It was nice to just sit around and talk about "normal" stuff - school, movies, our dog and such. Then Saturday night Brianna's body began to hold onto water. Actually, water was seeping out of her vascular system into other parts of the body. She began coughing more and by Sunday it was apparent that both lungs were getting some fluid built up around them and that there is some fluid inside her good left lung. At one point, she had four liters of excess water that her body was holding onto, even with some diuretics. Again, it wasn't in her system, but is leaking out of her cells into other parts of the body.

All this excess fluid meant she began coughing more and was having trouble breathing. So she has had to have oxygen and last night, needed an oxygen mask and a higher rate of oxygen. Plus, she's been having slight fevers for the past few days, but last night it went to 39.1 Celsius (a fever is considered 38 cel.) - I forgot what it translates to in Fahrenheit.

It just seems that whenever things seem to be heading up, we get hit with another setback. And her poor body is just being hit with so much. She's fighting the chickenpox re-activation virus, the fungal infection, a chest tube, too much fluid and yet she's very thirsty, coughing, not enough oxygen, menustration and now possibly another infection - bacterial this time. The doctors say that a bacterial infection may be the culprit to all this excess fluid. But yesterday and last night she was given three doses of a broad spectrum antibiotic and no change - in fact higher fever. So they've added another antibiotic to ensure that they've covered everything, including Staph. Because she has an IV in one arm and a chest tube, a Staph infection could be very likely. Again, we won't know until we see if the antibiotics work later today.

I pray so hard every night and I try not to cry, but there are just so many bumps. Brianna is so strong-willed and determined and I know she'll perservere, but why does it have to be so damn hard?

Now we are told that they may not be able to put in a smaller chest tube, because for obvious reasons, they don't want kids undergoing surgery who are having respiratory problems. Why can't we get a break? It seems that it's two steps forward, one step back....then....one step forward, two steps back. So the thoracic surgeons said that an anticoagulant should be put in the tube only to ensure that it's draining correctly. That will happen later today also.

Brianna said this morning that she thinks her body is giving up. I told her it seems that way because she has a high fever - the highest she's had since this all began. And she hardly slept last night. From 11:30 pm to 5:30 am, she was up every hour coughing and going to the bathroom. Sleeping upright, with an oxygen mask and a chest tube sticking out your side is not comfortable either. Even though I tried to sleep with earplugs knowing our wonderful night nurse Angela is here to take care of Brianna, I just couldn't drift off.

My strength is waining and I hate seeing her go through all this. It's a good thing my husband and dear friend Alissa are coming tonight. They will help me remain positive, upbeat and strong for Brianna. I wish I could give Brianna a break and take some of the load she's carrying.

I seem to end all of my posts with a request for positive thoughts of healing and for prayers. I am sincere when I ask, and I know there are a great many people out there who are with us in this and keeping us in their daily devotionals and meditations. We need them ever so much.

No Surgery Yet, Chicken Pox Virus Re-Activates & Better X-ray

2007-04-13T10:41:00.000-07:00

Yesterday afternoon, the doctors decided surgery to replace Brianna's current two chest tubes with one smaller one would not be a good idea today. They were sure the chicken pox virus had re-activated because the small blisters on her upper back, her low immune system and the trauma of surgery. It was confirmed by the lab's report today.

When it reactivates, it's shingles and many people get it when they are run down (low immune system) and stressed. It's also not surprising that it re-activated, because the virus has settled in the nerves on her right upper side, which is the same area where she had surgery. Another clue is that they stop at the spine and only affect one side of the body.

Surgery was delayed to ensure the virus wouldn't enter the inside of her chest. However, the thoracic surgeon/fellow (not a resident) did come by and removed the chest tube that lead to the back of her lung area. That was painful for her, but at least now she only has to deal with one until the surgery next week. She squeezed my hand tightly and did an awesome job controlling her coughing.

She's on acyclovir by IV, which will control the virus in the next five to seven days. So they are scheduling the surgery for next Thursday or Friday. Brianna will have a smaller tube inserted to reduce the risk of infection and to enable her to move a around easier. She does not like all that is happening to her, but is so compliant. Even if it hurts or is uncomfortable, she says, "Okay, what ever, let's just get it over with." She grits her teeth, pushes her pain medicine button for an extra dose and says I'm ready. She is so strong and determined.

The best news the doctors gave us was her chest x-ray yesterday showed that more of her upper lobe cleared and that even some of the lower lobe, which was totally collapsed, had opened. This was so encouraging that we are on the right road to getting her well.

However, a few days ago she was very down and cried saying this was too hard for her. That her body was so weak and she had never felt this way before. In fact, she hasn't eaten much at all in 8 days and has been in bed for almost a week - getting up only to use the bedside commode. She had major surgery and she shakes with fatigue when she gets up. (For those who know us, she was already skinny, but her legs are really thin now!) She's been put on nutrition IV, total parental nutrition, over night so she can eat during the day. If she doesn't, she'll at least get nutrition at night.

I comforted her and told her she just went through major surgery (just so you know - they cut through five layers of muscle just under the shoulder blade to get to the lung area). That it was natural for anyone to be feeling weak, shaky and just like they've been hit by a truck. Especially, when you add the fact that she really hasn't gotten a full nights rest in two months. I also said that she would get stronger as each day went by and each time she got up. I just don't like seeing her unhappy!

But she calmed down and actually got a lot of rest yesterday. She was a little stronger today and had a homemade ICEE - Italian orange ice, cranberry juice and ice cubes. She had been craving flaming hot Cheetos while in the ICU - but I could only find crunchy Cheetos. She only got about 20 down before she was full.

Also our TV was not working in our new room and my wonderful husband called the CEO of the hospital. It didn't take many emails and phone calls to explain what we've been through and how long we'd be here before he agreed we should be first in line to get a new TV. Around noon, Engineering showed up with a new television and the CEO's assistant brought a portable DVD player for us. Everything works fine and now Brianna and I can watch American Idol, Survivor and some of our other favorite shows and DVDs.

I have to say we've been blessed with so many friends. Alissa, one of my best friends from Memphis who I miss very much, will be flying out next week to spend a few days here. Her support will help me be strong for Brianna. And today I got a call from Christy, a dear friend from a group I'm in - Primitive Folk Art Tea & Talk on eBay. She said some of the members will fly in to see me around the beginning of May. I am just speechless with this kind of support and caring. I cried when I talked with both friends. We feel so lucky to be surrounded with such love not only from our family, but also from such generous friends. I am looking forward to seeing them.

Brianna and I will be here for possibly another two months. We still have a long way to go, but the new therapies are already providing some promising results. Thank you to everyone who has helped us in the past two months and continue to everyday.

Out of Cardiovascular ICU, Back on LPCH 2 North

2007-04-12T09:29:00.000-07:00

A lot has happened since Monday, as you can imagine. Everyday brings something new, sometimes good and sometimes bad. But we are finally out of the ICU and back in 2North, this time in room 2341. Brianna is undergoing some new therapies, will be having surgery again tomorrow and we are anxiously holding our breath about a rash she is starting to form on her back.

On Tuesday, we were at a crossroads in Brianna's treatment. Questions, ideas and theories were thrown around by the doctors to find the best way to save her right lung. The top of the three lobes on the right is definitely getting air and has even opened up a bit more since after surgery. This is good. But the two lower lobes are still showing up as collapsed. Our thoughts were to remove them, since people can function just fine with two less lobes. However, because she has an active infection, that area would fill with fluid - most likely also infected. The other thing that the doctors quoted to us was "Nature abhors a vacuum." Which means that empty area in her chest would most assuredly fill with fluid.

So what to do? Because we couldn't stay in the ICU with her, John and I had a hotel nearby. We would go to it and try to figure out the safest, best approach that would not only destroy the fungus growing in her lung, but also save her lung. I realized that after two nights of uninterrupted sleep, I was beginning to think more clearly. I was no longer an emotional wreck, but a parent who could come up with some rational ideas to get Brianna well. We also hadn't heard any ideas from the doctors that didn't have some level of high risk involved.

When we I met with the doctors next, finally they had thought outside the box and come up with a relatively safe treatment alternative. It could possibly save her entire lung and rid her of the aspergillus.

Our bone marrow transplant team consulted with the medical director of infectious disease/BMT on the adult BMT side of Stanford, and they came up with a plan we feel is very promising. They discussed using the two chest tubes currently in Brianna to administer a very strong anti-fungal directly into the space between the lung and her chest wall. This space, or the pleura, is not fed by the blood vessels. Any intervenous anti-fungals she gets won't penetrate that area very well. Flushing the outside of her lung with the medicine, in this case the powerful amphotecerin B, will ensure that it is thoroughly covered - inside and out. This treatment has been done on several adult patients on the Stanford side of the hospital and was successful. So there is hope that her lung and it's three lobes could heal with this treatment.

For her, the first time the doctor injected it into her chest tube, she coughed a lot and felt pressure on her chest. That's because they used a large amount and it compressed her lung making her feel like she couldn't breathe. She also felt like she tasted it a bit and that's because they removed several layers of scar tissue from around each lobe. The amphotecerin was absorbed by the lung capillaries and most likely absorbed into the lung. The second treatment yesterday went better because they used a smaller amount, but left it in for 10 minutes rather than letting it drain out right away the day before. After they unclamped the tube, about half of it drained and the rest trickled out over the next few hours.

Throughout this, Brianna is heavily sedated. For those of you who know her, she is very grossed out by all of this medical stuff, let alone chest tubes and such. So she is kept very comfortable and pain free, most of the time sleeping. Tomorrow she will undergo surgery again to remove the rigid tubes she has in the front and back of her lung area to have two smaller, more flexible ones put in. Infection is the big risk with all of this, so everyone must wear a mask now in her room and a system will be in place so that the tubes are enclosed. They don't want any bacteria to get up into her chest.

This will be a very long process, and we're told to expect another two months in the hospital. If you or someone you know has had to fight toe nail fungus, you may know it takes a long time to eradicate it. Fungus in the lung is no different. Now this doesn't mean she may not have a lobe removed down the road, but until she has this infection and until it is gone, that surgery can't happen.

As if Brianna's body hasn't had enough stress put on it, she may be coming down with a re-activation of the chicken pox virus on her back because of her immune suppression. Instead of chicken pox though, it returns as shingles. Once you've had the chicken pox, the virus resides in your body forever usually in one area and on one side of your spine. It looks like for our sweetheart, the virus settled on the nerve ending's that wrap around the chest on her right side - the same side as her surgery. They've cultured it and we should get some news tonight. But the treatment is an IV medicine that is hard on the kidneys - along with all the other IV meds she's getting that are hard on the kidneys. Thankfully, hers are working fine, but a watchful eye will be on them to ensure they stay that way.

So last night, we were moved back to the transplant floor on 2 North. Of course, it didn't happen until 9 pm and we were up almost all night with various issues. The two additional IVs that were put into each of her arms during surgery and her stay in ICU both went bad. They had to be removed and a new one put in on another area of her arm. Then the resident and fellow came in to culture the rash on her back and then, when Brianna coughed, air was escaping from the incision where the chest tube enters her body. So another x-ray was taken to ensure air was entering her chest. That could collapse a lung and then there's the serious infection risk. Nothing should be going in her chest unless it's sterile.

Another dressing change was needed of the surgery area, a painful experience for her. So by the time we actually went to "bed" it was 4 am. Thank goodness I had gotten three nights full rest at the nearby hotel. Still I'm pretty tired having gotten up at 7:30 am. Can you imagine how exhausted Brianna must be? Every hour, someone comes in to talk about her treatment, check her vitals, do antoher x-ray, discuss her nutritional habits, take a blood sample, and the list goes on. She hardly gets a chance to really sleep.

Everyone says she's a trooper - and I know I've already said this - but she is much, much more than that. I have no words to describe how amazing she is, and the kind of strength she has to endure all these procedures.

We've gotten lots of letters from my PFATTie friends...a talented group of women artists across the country that I feel honored to have befriended. And all the posts from family and friends are so caring and helpful. But I really couldn't face the past five days without my husband, whom I'm so lucky to have. Trevor misses his sister much and she talks in her sleep to him while she's under lots of her pain medicine. I miss our home, and being a family, with our children together, under one roof, and our dog sleeping at our feet. Don't take anything for granted, especially your family. Every day is a gift.

We are thankful for your continued thoughts and prayers.

Day 2 in the Cardiovascular ICU and Brianna Better

2007-04-09T07:49:00.000-07:00

All of your posts of prayers and healing thoughts help us through these trying days. Although I cannot read them to Brianna yet, I plan on it today. She too gets strength from all of your emails and posts.

Easter for us was really spent bedside with Brianna. She didn't know what day it was and the only indication was a cute little bunny and basket the ICU left for her and later that day, two more Easter baskets from the nurses on 2 north. A note came with it that said, "We miss you Brianna!" When we saw them, we got teary-eyed about their caring so much for her. She has touched the hearts of many people around her at the hospital and we are so proud to be her parents. We thank God for her strong-willed nature, because that has helped her through all of this.

Yesterday, Brianna slept most of the day until late afternoon. A CT scan was ordered in the morning and being that it was Sunday lots of people had to be called in to get it done. At 5 pm, she was taken down to the first floor of the Stanford side of the hospital for the CT. The doctors wanted to get a clear picture of her lungs while she was still on the ventilator. Although she was using it minimally, the more air in her lungs the better the picture. Once the CT was taken her breathing tube could be removed.

Taking patients off ventilators is a tricky thing. They must be awake enough to breath and cough, and yet they shouldn't be too awake that they are in pain. So it took about four hours after the CT before her sleepy medications wore off and about 10 pm the process of removing the tube started. It is a terrible process to watch your child go through and for any of you who have been through this, I just can't imagine. She was in obvious distress. Who wouldn't be with a tube going down your windpipe, blocking your vocal cords, gagging you, but allowing you to breathe?

But like the strong woman that she is, she did everything the nurses and respiratory therapists asked of her. Of course, we were annoyed because she was wincing from the feeling of the tube, trying to cough it out and the therapists is asking for a longer suction tube - which took a few minutes to get. At these times, a few minutes to Brianna is like an eternity. We understood why most of the time they don't allow parents in the room during this process, however we were able to stay. John almost lost it with them asking why they weren't prepared, when they knew they had a 17-year-old who needed adult size equipment rather than a baby and the too small equipment they had.

Once the tube was removed, Brianna was so much more comfortable. She was whispering to us about what she needed and we were so relieved to see her looking more like herself.

The official read of the CT scan will be done this morning, but we were able to see the pictures last night. And we were so happy to see that her upper lobe had opened up significantly. Her two lower lobes, however were still collapsed, and possible deteriorated by the fungal infection. We won't know for sure for some weeks, but Brianna may have to go through this surgery again to remove one or both of the two lower lobes. At this point, only time will tell, but our dream would be that at least one more opens. Also, we just hope and pray that the area around her lungs does not fill up with fluid again. It won't for now because she has the chest tubes, but those should be coming out some time this week.

The nurses will be making Brianna cough and use the breathing incentive barometer to ensure that her lungs function well. THey will be getting her up and walking today too. As long as she is on her pain medication and with the will and determination she has, we know she will do well with this.

We are taking one day at a time right now, and I will be meeting with the doctor this morning around 10:30 to learn more. I can't say it enought though, your prayers and positive thoughts are so very appreciated. Thank you.

Day After Surgery and Easter

2007-04-08T09:15:00.000-07:00

I thought I was strong, but I don't know that I am. Yesterday, was one of the hardest days of my life. John thinks it was second to the day we thought her transplant failed. It was probably one of the hardest for Brianna, except for the fact that she has been sedated. Thankfully, Brianna is doing well, but I sobbed and sobbed.

Brianna went into surgery yesterday morning. We hugged and kissed her before she went in and told her we loved her. I took her glasses, and she was wheeled into the surgery suite.

A scope was put in her chest along with a chest tube to drain the fluid around her lung. The good news was that the effusion was not infected and was more like blood-tinged clear fluid. Brianna is the strongest woman I know. She was carrying around two-and-a-half liters of fluid inside the right part of her chest. All of the health care professionals marveled at how well she was breathing on her own with such a huge effusion. Dr. Whyte performed the surgery and Dr. Weinberg, our BMT doctor, was in the O.R. with Brianna the entire time.

After draining the fluid, the thoracic surgeon said the right lung did not inflate on its own. He also noticed that the outside of the lung was thickened with scar tissue, which would inhibit the lung from inflating. So a decision was made to go in to her chest with a 6-inch incision along the bottom of her shoulder blade to peel some of the scar tissue off.

Bleeding issues and lack of platelets didn't really affect Brianna. She was given a unit of platelets in surgery and her white count was 5.5. The doctors said she did very well during the whole procedure. After peeling the lung, which was like peeling an apple rather than an orange, the tissue on the bottom, middle and lower portion of the top lobe all looked diseased. This was not what we wanted to hear. But instead of taking any of her lung out, Dr. Whyte left it all intact, and closed her up, leaving two chest tubes- one on the front of her chest and one at the back.

These tubes are about an inch wide, and anytime you leave something like that in the body, especially the very sensitive lining of the lung, it is extremely painful. Fortunately, she was very sedated the entire time.

The doctors decided not to remove any part of her lung, because it all looked the same, and while it is an uphill battle, he has seen lung tissue like this heal. Any time someone has a bad pneumonia, the tissue doesn't look healthy, but can sometimes heal and thus he left it all in. As he said, once you take the lung out, you can't go back. Plus, because she is immune suppressed, if he took the entire right lung out, it would leave a huge empty area in the chest, which would be very susceptible to infection. The doctors said her long-term life prognosis would not be good.

The other consideration was that a blood test that was done about a month ago showed that the amount of aspergillus in her system was 2.0. For a normal person is would be below 0.5. When the same test was taken on Monday, the level dropped to 1.08. So the antifungals are working, more encouraging news.

As we were told what the doctors found during surgery, John and I sat just listening. Then, after 20 minutes, I just started crying uncontrobably. I guess it was just time for me to break down. My husband is so strong and although he had to struggle to control his own emotions, he was able to comfort me with all the positive news we had gotten from Dr. Whyte who knows lungs and has seen lots of them.

So it was decided to keep Brianna on a ventilator with a breathing tube down her throat to see if the positive pressure would help inflate her right lungs. An x-ray taken soon after surgery, showed much more aeration in the top lobe and maybe a little in the bottom lobe. This was very promising, also.

I thought that I was ready to see her in the pediatric cardiovascular intensive care unit, but I wasn't. We didn't get to see her until about 2 pm. She is in a double door isolation room, much like the transplant rooms we were in for two months. Anyone going in or out, must wash their hands and wear a mask, because of the risk of infection.

We went into her room along with her nurse and talked quietly to her while she was sedated. But at one point, she started to wake up and held onto my hand and onto John's hand, squeezing them extremely tight. We had to hold her hands away from the breathing tube, because she was trying to take it out and gasp for her own breath. You can't talk when you're on a ventilator, but it seemed that she was in pain. So I talked with the CVICU physician about increasing her pain medicatin and making sure she remained sedated. After giving her a couple of extra morphine pushes into her IV, she settled down and was finally made comfortable.

But a parent is not supposed to see their child like this. She has tubes everywhere, her legs are in inflatable compresses to avoid clots after surgery and she has two IVs in her left arm - one to check her blood pressure and one for extra access to her venous system. This despite the fact that she has a central line with two leumens - both of which have many lines hooked up to them. The breathing tube is taped to her face in order to keep it in place and she has a nasal-gastro line taped to her nose, to keep it from shifting from her nose to her stomach. Her eyes are closed but her lashes are smeared with a jell-like substance which become tears to keep her eyes moistened.

When she was moved to the CVICU, we were kicked out of our room and had to move everything to the car. You are not allowed to sleep in the room with her, but can stay as long as you are awake. We had to get a hotel room for the night and have reserved it for tonight as well. We're hoping we can get into the Ronald McDonald house in the next day or so, until she is out of the CVICU and can return to a transplant room on 2 North.

The doctors and nurses said we should go get some rest while she was sedated. So we left and are only just a mile away from the hospital. But sleep was the last thing we could do. From our many bags of belongings, I took a pink shaggy, heart-shaped pillow Brianna used in the hospital. I clung to it all night, prayed for her health and strength, and tried to sleep. We were both able to get some rest for several hours, but we were both extremely restless. Sleep is the last thing you can do when you are not with your child who is sick and your child is in the hospital a mile down the road. And the terrible thing about it is that it is what your body needs desperately in to to stay strong.

An x-ray today reveals that her upper lung does look like it's getting more air, but the two bottom lobes look unchanged. We haven't met with the doctors yet, but there is talk of removing the breathing tube. She is doing it all on her own. Our daughter is so strong-willed - thank God - and so strong, I cannot imagine. She is also given a drug to help her forget all this - a wonderful new medication for experiences like these.

She had a good night the nurse tells us and had a slight fever. But that has come down slightly this morning. After surgery her white count was 4.5 and her hemoglobin 9.2 (her red blood cells). This morning, her white count is back up to 5.5, her ANC 4,000 and her hemoglobin 10.2 - even though she didn't get an infusion of packed red blood cells. We're hopeful this means her red blood cells are starting to be produced by her marrow.

As my husband says, "The wolves didn't get us, but we're still not out of the woods." On this Easter day, we pray that infection is kept at bay, her lung continues to improve, the chest tubes are no longer needed and no more fluid accumulates and that she starts healing thoroughly.

Quick Decision Means Surgery this Morning

2007-04-07T07:32:00.000-07:00

The past week has flown by with CT scans, doctor rounds and surgeon searching, but Brianna would disagree. She has been naucous off and on all week, and has hardly eaten a thing because of it. It's very frustrating for her, because all she wants to do is feel well. (I mean who wouldn't??) Like the strong woman she is though, she made it to the roof several times for the exercise and fresh air. It was also a nice escape from all the horrible jack-hammer noise that goes on all day just below our room. We nap with ear plugs and can barely hear each other over the noise, which persists for hours sometimes, and begins as early as 6:30 am! Sometimes my chair or feet vibrate on the floor from the construction below.

However, the biggest news is two-fold. First, Brianna had a thorough CT scan late Thursday. We were so happy to hear that there is no aspergillus anywhere else in her body! All her organs are functioning well and she does have some fluid build-up in areas, but that will go away as soon as she's off some of the strong medications she's on.

The second piece of information was that the effusion, or fluid around her lung, has grown. In fact, it has possibly collapsed the second lobe of her infected right lung, and is beginning to affect the top lobe. The pressure has grown so that it is even shifting some of her organs over.

So Dr. Ken Weinberg, the head of the bone marrow program here, decided to get a thoracic surgeon's opinion on the best approach in dealing with this. They enlisted Dr. Richard Whyte the head of Thoracic Surgery at Stanford, or the adult side of the medical center. After careful evaluation yesterday morning, it was suggested that they take a staged approach in treating the lung infection. And, take this approach quickly, because obviously Brianna's lung has not gotten better.

Dr.'s Weinberg and Whyte, Lizzi (our nurse practioer who cares for us), Darci (our dear Social Worker), Brianna and I met yesterday afternoon late to discuss surgery for this morning.

Dr. Whyte's approach is to go into the fluid-filled area surrounding the lung with a scope and to place a chest tube. What he finds will determine if the surgery becomes major surgery with removal of a portionof it. If the fluid drains easily and is not infected, a chest tube will be placed in order to alleviate the pressure on her lung. She would have it for seveal days, and it will allow her a couple weeks to get her platelet counts up. She's been very dependent on donors right now. Then, when her new marrow can hold its own platelets, the major surgery would be planned to remove the diseased lung tissue.

On the other hand, if Dr. Whyte finds that the fluid is infected and filled with pus, he would proceed to remove it as well as the fungal affected parts of her lung. This is majory surgery going in through the side under her ribs. It becomes riskier too because her body is not making platelets to help in clotting. But Brianna is ready to have this done, she is so tired of the pain and coughing. Of course, I'm praying it's just the scope and tube today so that the bigger surgery can be done when her body can handle it better.

The doctors have lined up all sorts of platelets for her. She can't have just any ol' platelets either. Because of all the previous transfusions, her body has built up antibodies to certain HLA types. So it was also a major consideration among the doctors here whether they should proceed with the procedure today if the blood bank wasn't able to supply a enough units of HLA specific platelets.

So here I am at 8 am, our room is packed and Brianna is sleeping while we wait for the call from the OR that they're ready for her. She will spend tonight in the pediatric Cardiovascular Intensive Care Unit (CVICU). Anytime a bone marrow patient has to go to the ICU, they have to pack up their belongings and be ready to give up their room to another patient. We don't know how many nights she will be there, but I won't be able to sleep in the room with her and we can't keep our transplant room. Depending on what happens inthe next couple of hours will determine where we will be. No matter what, I will be sitting by her bedside in the ICU until I know she's doing well.

If surgery is just the scope and tube, it will take about an hour. If it's major surgery to remove part of her lung, it will be three hours. There was a lot of planning that took place about where to have the surgery - the adult side or pediatric - and where she will recovery - adult ICU or pediatric. I think our doctor's plan makes so much sense, because Brianna is a young adult and an adult surgeon is used to working on patients her size. Whereas, the CVICU deals with immune compromised patients who have had heart and lung transplants. They know the kind of immune suppression medications she's on and they often work closely with the bone marrow transplant team.

When I asked Brianna how she feels this morning, she is nervous. But she is happy that something will be done. I have to say, we are so relieved that her white count is stable - it's been holding around the 5.3 to 5.6 range - and now the lung infection can be dealt with. As always, I ask for your positive thoughts and prayers for the best outcome this morning, so that Brianna will begin her journey of total recovery again.

Day +41: Talk of Surgery in Coming Weeks

2007-04-03T10:52:00.000-07:00

Well you wouldn't know that Brianna is doing better, unless you looked at her lab reports. We get a daily copy to see where her blood counts are, to see how her kidneys and liver are functioning and to see how well her body is coagulating. All her numbers seem to be getting better, however she began feeling quite nauseous again. We had a pretty good weekend, but yesterday she was feeling ill all day. She didn't eat a thing and tried to throw up to feel better. But it was no use.

(This little dish came to us about a week or so ago. It is a mystery who it came from, but it has brightened our little room we have called home for the past seven weeks. Thank you!!)

This morning she ate a little something, even though her stomach hurt. She's been in bed most of the time for the past two days and I'm prodding her to get up and walk around. It's so hard when you feel like you're going to toss your cookies all the time.

So far, the plan is to have a CT scan with contrast this Thursday to get a clear picture of her sinuses, lungs, abdomen, kidneys and GI tract. They have to rule out fungus in other areas of the body. They say there is a very small chance that there is, but since they're doing the CT they want to be sure. We pray that all is clear and that the infection has gotten smaller.

Her white count today at 2 am was 6.9, which is really good news. They decided to stop giving the white cell stimulator - G-CSF - unless her ANC falls below 2,000. Right now, her absolute neutrophil count is 5,330. The last dose of G-CSF was on Sunday morning, so her body seems to be holding its own.

Next week, Brianna will have another bone marrow biopsy. I hate seeing her go through these. I may have already told you, but she said the worst part of this is that when she's wheeled through the hospital halls on a gurney with a mask, she looks like a patient. She never thought it would be like this, and I never thought it would be either.

Now, talk of surgery has begun in order to remove one of the lobes of her lung. We're praying it's just the bottom lobe of her lung. There doesn't seem to be a really good picture of it, so hopefully this CT will tell more. But the mere mention of lung surgery scares me so. Brianna says she doesn't care anymore, "just cut the infection out of me." She asked if it was bad that she doesn't care and I, of course, told her it's normal. Anyone who has endured weeks and weeks of coughing, pain and discomfort like she has would be ready to do anything to get rid of it.

The thing we were hoping for was that her platelets would hold for a little bit. She's getting transfusions almost daily, usually two units. (Thank God for platelet donors.) But her body is consuming them with the bleeding in her lung infection (aspergillus cuts through the blood vessels) and her bladder - she has something called BK virus that affects the bladder and causes bleeding. We all have had BK at some point, but because our immune system is intact, it just becomes like a cold. But for immune suppressed people, it can cause bleeding of the bladder. We just have to wait out the virus, and it doesn't cause much discomfort or pain. And, all those platelets help her body stop the bleeding.

So the question they're asking is would cutting out the fungus help her body maintain platelets better. In the short term, maybe no for a few days while she's in the intensive care unit. But after that, maybe yes. But a surgeon has to be consulted to see what would be involved and whether a pediatric or adult surgeon would be better for her. Just the thought of her being in an intensive care unit for a few days scares me to death. Plus, I won't be able to stay with her in the ICU. I don't want to think about this, and as I said, I never thought it would come to this.

Please continue your prayers for us. We have some difficult decisions to make coming up and ones that may affect Brianna for the rest of her life. It's not right seeing your child go through this much. I just want to see her a happy teen again.

Thank you Newcomer's for your beautiful cards. They came flooding in last week and Brianna loved opening them and reading them. The nurses said Brianna had gotten the most mail. You are so caring and I don't know how to thank you. Here are a some of the cards that were sent. We feel your prayers, warmth and support.

Another Round of Good News & Hope for More Healing

2007-03-30T10:00:00.000-07:00

It's been seven days since we were at our lowest emotional state over Brianna's condition. Since then, good news has trickled in over the week and yesterday afternoon brought even more.

For the past three days, Brianna has been getting G-CSF, a drug that stimulates the bone marrow to turn any baby cells into white blood cells. Plus she's gotten two infusions of blood donor white cells, or granulocytes (named thus because under a microscope smear you see granules). These infusions have skewed the numbers on how many white cells her own body is making, so it looks like a lot. But in fact, they are just blood donor cells that will die within 24 hours.

So she was purposely not given another granulocyte infusion for a day, so we could see what her body was doing. Tuesday night she got an infusion and at midnight afterward, her WBC (white blood count) was 4.2. On Wednesday morning, it naturally dropped to 4.0 as some of those donated cells died. It fell even further to 3.5 close to midnight that night. Then, at 6:30 on Thursday morning she got her third dose of G-CSF to help her body make its own white cells and later in the afternoon, her white count jumped to 5.0!!

When Lizi our nurse practitioner who takes care of us told us, I cried. I asked several times, "Can that be right?" How could it go from 3.5 at midnight to 5.0 without any infusions?? Well, her marrow must be kicking in!! Of course, our dear sweet daughter is skeptical just because she doesn't want to get her hopes up. And I must admit, as happy as I am, I am also fearful that it won't really be true. And, admittedly, a part of those cells could still be from the last white cell infusion. BUT, even if only a portion of that, say 2.0, was hers we would be so overjoyed!!

So it's been decided she won't get any more white cell infusions from volunteer donors, starting today. And it was nice that my donation yesterday morning will most likely be her last. I wasn't able to give her a huge bump - only 405 ml of white cells versus the typical 700 mls most male donors provide. But at least I was able to contribute.

I arrived at 7:30 am, after taking G-CSF about 12 hours before, to get my body making lots of extra white cells. About five minutes after they put the IVs into each of my arms, black splotches began to appear. I said, "Uh, I think I'm going to faint. I'm feeling really dizzy and faint." They immediately scrambled around to lower the head of my chair, told me to take deep breaths, turned off the machine and put some cold compresses on the back of my neck. They said it was a vaso vagel response to the needle punctures in my veins. I had no control over it. So after 10 minutes of getting me stable, the process began and worked until almost half way through. That's when my right arm stopped cooperating. After several more IV punctures to find another suitable vein for the return of my blood, we had to call it quits.

I had been sitting in the chair for almost three-and-a-half hours, and they said I need to be rehydrated. I kept apologizing about how difficult this was for them and they were very nice telling me it was no problem! I felt so bad. I had only given a little more than half of what they wanted.

The doctors said it was fine and that actually it was better they didn't get a huge amount. So Brianna got some of my white cells, and it only bumped her up a little bit - her WBC was 5.8 as of midnight that night. So I have a huge bruise on my right arm, but it did feel good to contribute. I also got a taste of what poor Brianna went through with all those weekly needle sticks from October to February. She is such a strong person! My experience was nothing compared to what she's endured.

Monday will most likely give us a real picture of where her white count stands. The doctors are pleased and she'll get G-CSF every other day, then taper off.

As for her lung infection, an x-ray yesterday showed that there is a little more fluid around it. This makes it difficult for her to practice her breathing - something she hates anyway because it causes her to cough. Her left lung is perfectly clear and we pray it stays that way. Now we hope for some miracles to be worked on her infection.

Surgery is looking more and more like a reality, but it really can't be done until her platelets start being produced. So once her white count is stable, we're looking for her platelets to come in. Unfortunately, it could take weeks. We are left playing the waiting game on her lung. I can't tell you how stressful it is to just wait.

So we're going to try to get out on the roof and walk around today. She is very naucous again, which is most likely the gunk from coughing and quite possibly a touch of graft-vs-host of the gut. But we've come so far in seven days, and we thank God for all the good news we've gotten in the past week. We just want it to continue, and hope for some healing on her lung.

A couple of my friends came by yesterday to say hello and gave me a hug. Ingrid and Tilma's visit was a total surprise, and was so nice. We chatted about our life here at the hospital, Brianna, and health. I got an update on all the tennis happenings in my area, and it was nice to talk about normal stuff, even for only an hour. They literally popped their heads into Brianna's room to say hello and gave her a very sweet Easter basket, and left because, Brianna didn't feel well. It was a nice break for me.

Later that afternoon, John came over with our clean laundry and mail. Brianna was still sleeping so we went to a little restaurant across the street. Again, it was so nice to get out just for an hour. We also celebrated the good news about her whtie count. When we got back, Brianna didn't even know we had left. She was still sleeping. Sometimes the guilt about leaving pulls so hard. But I am reminded that I need to replenish my spirits so I can be strong for her. I am looking to help replenish hers with an afternoon stroll outside with her in the sunshine and no mask.

Thank you all for helping us stay strong, to see the light at the end of the tunnel - no matter how small - and to keep believing.

Day+35: Good News Brings More Hope

2007-03-28T11:01:00.000-07:00

It's been several days since I last posted, and we've gotten several pieces of good news since then. But it still is going to be a very long hospitalization and recovery for our sweetheart.

First, we learned on Monday that the white cells floating around in Brianna's peripheral blood were 100% her marrow donor's - a good thing. Next, we found that there was no sign of any monosomy 7 cells - the malformed ones Brianna's body was producing that caused her MDS condition. Then, yesterday we learned that the stem cells in Brianna's marrow are virtually all her donors, that the white cells in the marrow were also primarily her donor's and that there are very few lymphocytes and T-cells in her body (they live long, can cause graft-vs-host, marrow rejection and were purposely obliterated by the rabbit ATG).

We, and I mean the docs and our family, were all so happy with the findings about the cells IN her marrow and the cells being PRODUCED by her marrow. It also meant that she did not have an immunological rejection of her donor's stem cells. Whew! Plus, she tolerated the granulocyte (white cell) infusions well and has had an ANC above 1,000 for four out of the last five days, thanks to these donors. (I'm donating tomorrow now, because they didn't do all the lab testing on my blood they needed to.) These are great in the fight against the fungal infection. So what's the hold up with her body's production of its own white cell counts?

The doctors surmise that her counts haven't returned yet, because she got a low number of stem cells, and because her marrow may not be perfectly suited yet to house the new stem cells. Sometimes with MDS, monosomy 7 patients, the bone area that holds the marrow declines and becomes fibrous. In looking at her bone marrow biopsy prior to admission, the doctors said this shouldn't have been a problem in Brianna's case. However, they did say that because she had MDS that it may be taking her new stem cells longer to set up house there. Plus, she got a lot less stem cells in the first place. So they've told us we're going to be here for a while.

They've started giving Brianna G-CSF or granulocyte colony stimulating factor - the same drug they give those people who have donated their white cells. The drug is used in transplant patients to turn the baby cells in the marrow into white cells. She's only had two doses and she's had infusions of granulocytes, so it's hard to tell what her actually white count is without the addition of the white cell donors. In order to get a better idea, she won't get any white cells today and her blood will be drawn 48 hours after the last infusion of white cells, or granulocytes. That way we can determine if her marrow has actually started making more cells of its own.

In the meantime, the fungal infection will be tracked on Monday when she gets another CT scan. They will also scan her sinuses, abdomen, pelvis and chest to ensure there are no other additional fungal infecitons. We pray everything is clear.

The doctors have encourage her to get out of her room, even wearing a mask and enjoy the outdoors a bit. So just before it rained, we walked on the flowered patio outside our room and sat for a spell. Then along came a few raindrops and it was just so nice. Brianna really enjoyed it. (The whole time we are pulling her heavy IV pole around with it's four pumps!) Today, she got out on the roof and had to stop and rest a couple times before walking the perimeter of the roof garden, something she was able to do before three times. But the coughing is really taking a toll on her muslces. She is always sore and gets relief when she is sleeping. But she wakes every couple of hours coughing and so is quite tired.

She has also continued to use the incentive barometer, the apparatus that you inhale into to see how much air you can fill your lungs with. And the best news is that she has steadily made progress. The number continues to rise every couple of days. Add that and the fact that her kidneys are not so unhappy and the doctors are very pleased with her progress.

I told Brianna that she was my hero, because even when she doesn't want to do something, she does it anyway. All because she knows in the long run it will help her. She is like a fierce warrior, who doesn't think about pain, but just guts it because it's good for her. I don't know if I'd be able to withstand the misery she's endured day in and day out - coughing up mucous and blood.

I have to say that our son Trevor is also a fighter of sorts. This has been very difficult on him, but he has matured through it so far. It's been tough not having us there, but thank goodness my husband and my parents have been there and the Alamo/Danville Newcomer's Club group of volunteers known as Brianna's Boosters have helped tremendously. Thank you Sharon for your organization skills!!

Again, I can't stress enough how much the cards and letters encourage Brianna! And to my dear friends, your emails help me through the ups and downs. I love you for them. And for those of you I have not yet met but have sent notes and emails, thank you for thinking of us and keep us in your prayers. Brianna's dad and his family have also been so supportive of our sweet daughter. And of course, my dear husband, who works all day, visits us at night, picks up our dirty laundry and delivers mail, and then drives home a long distance to take care of Trevor and our dog. We are blessed to have such a wonderful support network. Your prayers are working, and we ask that you continue. Lots are still needed, to get us where we want to go.

Day +31: A Likely Failed Graft, Buying Time & More Marrow

2007-03-24T18:07:00.000-07:00

We are so fortunate to have so many friends, supporters and family who are with us every step of the way and cheering us on. You have no idea how much strength we get from your emails of love, encouragement, blessings and positive energy. Thank you.

By this time, Day +31, I expected Brianna and I to be getting ready to head to the local Ronald McDonald house. Instead, we face possibly another month or more in the hospital. Our beautiful daughter is such a fighter and has so much courage, I don't know if I could do what she has done and continues to endure.

The doctors are not certain, but they believe engraftment of her new marrow has failed. There is a slim chance her white count can begin to develop and increase in the next week or so, but just in case, they have started the process to contact the donor once again and get some more stems cells from her. It is all so complicated, but I will try to explain as best I can.

This whole problem, the doctors believe, developed because Brianna didn't get the amount of stem cells she should have received on her transplant day. That, coupled with the fact that they think her stem cells took a hit by a virus sometime around March 16, adds to the possible graft failure. We are still awaiting a lab report on the viral test to see. However, we may never know what happened. Now I say "possible" failure for a couple of reasons.

Some people get marrow stem cells from cord blood. This is the blood found in the umbilical cords of newly born babies. Parents consent to have the placenta and the cord donated for this purpose. As you can imagine, there's not a lot of stem cells in cord blood, so when it's used for a transplant, every precaution is taken not to damage those stem cells once they've been transfused into the recipient. But, because there are so many fewer cells to start with, engraftment usually doesn't take place until day +35 through day+42 (the day on which graft failure is indicated if no white cells come up). We're at day +31. So there is a remote chance that her cells will come up. Of course this is our prayer, but again we don't want to get our hopes up too much. (Lord knows how much we've been disappointed!)

On Thursday, Brianna's white count dropped to 0.3. It was decided to do another bone marrow biopsy. What they found was that the marrow did not have as many cells in it that it should have on day +28. So a chimerism study was ordered to see whose cells are in Brianna's marrow - are they all donor cells or have some of Brianna's cells survived her conditioning regimen (radiation and chemo) and taken over. We did find out that her blood does not have antibodies against the donor's stem cells. A good thing, but still doesn't give us the DNA of whose cells inhabit her marrow. We won't have an answer until Tuesday. Depending on the results will determine how the doctors proceed in making her whole again.

Interestingly, her white count on Friday went to 0.4 and then to 0.6 by Saturday morning. Of course, I was a little excited and so was the doctor, but Brianna said, "I don't want to get too excited yet." She is too wise for one so young. It dropped again to 0.4 later that day, so something is being made, but obvioulsy not enough and not like it should.

The doctors have asked for an urgent collection of stem cells, or marrow, from the original donor on April 2. This time, it will be of peripheral blood stem cells (PBSC). Rather than going in with a syringe and collecting the marrow through the back of the hip, the donor is given a drug to promote the growth of stem cells. Over a three-hour period, the donor will have an IV in each arm. One line will lead to a machine that will take out the stem cells in her circulating blood and the other line will return everything else. This process is quicker, is less invasive on the donor, and will provide a lot more stem cells than can be collected via the marrow.

This is where the chimerism study results of Brianna's marrow will be critical. If most of the cells they find currently in Brianna's marrow are the donor's, then Brianna will not have to go through any more immune suppression to accept a "boost" of more stem cells. If half of the cells are Brianna's and half the donor's, that will be problem. Normally, she would need immune suppression to accept more stem cells. That's how she got the fungal infection in the first place with her conditioning regimen back in mid-February. Suppressing her immune system to avoid GVHD for a week or two could give the fungal infection time to spread. She cannot afford this. So surgery has been discussed as a possibility between accepting new cells. But with such a low immune system, she would also be at great risk.

The major complicating factor in all this of course is the serious fungal infection in Brianna's right lung. Your right lung has three lobes, and the fungus - the most common species of aspergillus - has infected almost all of her bottom lobe and it is uncertain if her second lobe is involved. She also has fluid around the lung, which is partially obscuring the infected area and making it difficult to get a clear picture of the entire right side by CT scan. We've been told that without a high number of white cells, a fungal infection of this size is rarely resolved without some surgery down the line.

Before surgeons are called though, the best way to fight fungal infections is with a two-pronged approach using antifungal medications and the body's white blood cells - namely the neutrophils. Her body bascially doesn't have any to bring to the fight, so ensuring that the infection doesn't grow is a primary concern. At the same time, her new marrow needs to engraft so that she can continue to fight the infection. Thankfully, the infection is stable and has not grown in the past two weeks, even though she has few white cells.

In order to buy time, the doctors have decided to give Brianna granulocytes - the white cells and neutrophils of blood donors. These cells will rush to her infection and help reduce it. They had scheduled the first infusion on Thursday, but when the blood bank tested Brianna's blood with the white cells of the donor - Brianna's reacted. She had built up antibodies against that person's HLA type - a side effect of lots of transfusions. So partially matched HLA donors have to be called.

She got her first infusion last night, and she had only a few of the typical side effects and tolerated it pretty well. Of course, when you send a bunch of white cells to an invading bodily organism - fungus - the area becomes more inflamed, painful and produces much more mucous. So my dear daughter coughed up a lot of junk and even threw up a few times because her coughing was so strong. Over all, the docs were pleased with how well she did even though it made her feel a little more lousy in the end.

The doctors want her to have these infustions everyday for almost three weeks or until we find her counts have come in OR she gets another boost of marrow stem cells. This is all to buy time with the fungal infection, while we wait for some answers.

Since I gave Brianna half of her HLA type, I can provide one of her white cell infusions. My white cells should be accepted well by her body. So some of my blood was collected on Friday, to be sure I'm not fighting an infections or have any viruses I can pass onto her. I go in early Tuesday morning for the three-hour process of collecting my white cells, much in the same way they collect peripheral blood stem cells. My husband and Brianna's father will probably do the same, however Trevor cannot because he is under 18. Depending on the number of donors the Stanford blood bank may or may not have who will make a good match to Brianna's HLA type, we may hold a mini-white cell blood drive among family and friends.

The thing about these white cell donations is that they must be used within 24 hours of collection and the cells will only live for seven to 10 hours in Brianna's body. The infusion of cells she got last night at 6 pm have gone to battle and are already gone.

So now that I'm out of my medical explanation mode, I can now tell you how anxious we are about her. Brianna has such a strong spirit and is willing to put up with almost anything to get well. Her poor body has aches and pains all over due to muscle strain from coughing. Massages help, but last until the next coughing fit, which are often. She is not able to leave the room due to her low ANC, and so she can't walk around and get even a little exercise. Just feeling the sun and a gentle breeze on your skin does wonders and that little taste she got was a terrible tease. We pray everyday and night that something goes our way.

Because I was such a mess on Thursday and Friday and really didn't sleep, I asked my mother to stay with Brianna last night. I asked if it was okay with Brianna, and I think she could see my need for a good night's rest. My parents have done so much. My dear husband has been here for the past few days as well, making sure all our questions are answered, all avenues have been explored and that Brianna is getting the best of care. Brianna and I both feel his strength when he is near.

Our greatest wish is that her marrow begins to churn out white cells without any intervention. If I think too hard on all this and how she has changed from a vibrant teen, I am not myself and I don't function well. So many tears are dammed up inside of me and sometimes I have to leave her room in order to let some out. So I try to put it all out of mind and deal with the now in order to remain positive for my daughter. But your emails help ease my emotional pain and the cards and gifts for her help ease hers. Thank you and may God please bless my daughter with a healthy body.

Brianna's White Count Drops, Graft Failure Possible

2007-03-22T12:05:00.000-07:00

All last night I prayed that Brianna's white count would rise today, and I believed it would. After all, she was off the Sirolimus for seveal days now. But when I heard that it had dropped again to 0.3, a flood of tears came from me. Thankfully, I was at the nurse's station when I learned and not in the room. I had told Brianna that I was going to get coffee and I left so I could call my husband and sob.

It seems that we are not getting a break, no matter what it is! When I told Brianna, we held each other and cried. I got into her bed with her, held her and tried to comfort her. But, I was feeling beaten down too, and I'm not the one who has been coughing up spots of blood and having a side that is very painful due to fluid build-up around the lung and who has to live with this for the rest of her life.

So at this point, our main concern is no longer her lung, but the marrow itself. Her white count is the best defense against the fungal infection. But that has not gotten better and in fact has gotten worse. The question of whether the new stem cells are present in her marrow and have multiplied is the big issue. If so, then they are still being surpressed by one of the drugs she's on. If not, then obviously the cells did not graft and she needs another infusion of donor cells.

There are two reasons grafts don't take. One is that the body's own immune system has rejected the new stem cells. In Brianna's case that is really hard to believe because she's gotten radiation and chemotherapy to kill all her immune system. The second reason for a failed graft is that the new stem cells take a hit by an invading virus and are so depleted, they do not recover. Thus, a rise in white count and then a continual dip. So far we're awaiting a test results to rule out the virus.

The true test though is to see what's going on in her marrow. So this afternoon, she'll be getting a bone marrow biopsy. The doctors will be able to see a very preliminary smear on a slide several hours after the procedure and let us know what they find. But the real story will be found in the bone core and when its de-calcified. It should tell us what cells, if any, have made house there. If it's empty, then more stem cells are needed. If the marrow has lots of healthy cells, then the cell production is still being suppressed by some other drug she is taking. Of course, Brianna's primary worry is that she'll have to go through the terrible experience of radiation and high dose chemotherapy again. That is a worry of ours too.

In the meantime, we've requested that the donor be contacted immediately to ensure her availability. She is an international donor and we worry that with the time difference and distance, we may not get more stem cells soon if she's not contacted right away. Of course, we also have to hope that the donor is kind hearted and willing to go through the process again for us.

In clinical terms, if Brianna's counts are going down on Day +29, it means her graft has failed. Getting more marrow will be a priority. As for her lung, she's in such a tenuous position and the likelihood that she will need surgery to remove a portion o it looks more and more like a reality.

I am at such a loss, I cannot even say how sad I feel. That we have had to face every obstacle that usually happens to only a small percentage going through transplant is unbelievably frustrating. Brianna is doing what she has to in order to get well. Her spirits are not high, but she has not hit rock bottom. I'm afraid that is where I am. Writing this blog to keep you all informed is very helpful, and it is therapeutic for me. I know I sound as if I have lost my faith, and maybe I have. But I must at least be strong for Brianna and that is what I am doing in her presence. But if you look for me when I'm out of her room, don't be surprised if my eyes are red and I am wiping my nose. This is the hardest thing we have ever had to face.

Day +28: Still Hoping for More Counts

2007-03-21T13:20:00.000-07:00

Much has happened since Sunday's blog. One of our favorite doctors on the team came back on rotation and told us he was taking Brianna's chart and reviewing all her labs and her drugs and trying to figure out what to do about her poor kidney function, low white count and obvious lung infection. We were so thankful to hear this.

Her white count dipped again today to 0.4, and it has been hovering around that for the past couple of days. So it was decided to take her off one of her graft-versus-host disease prevention medications and switch it to another. He thinks it was suppressing her white count. Her last dose was Monday and so far there's been no improvement in her count, but he said it would take several days for the drug to get out of her system before we'd see an increase. He did admit though that he was also disappointed by the decrease in today's number of white cells. So she's been put on another drug to prevent GVHD and that shouldn't have any affect on her cell production. We're hoping to see some increaseses at least by Friday.

On Monday, the infectious disease docs did come in and say that the fungus she has was identified as aspergillus, a fungus that is found throughout the world. So one of the two antifungals she's on was switched out, to be more targeted in fighting that type of fungus. Also, because she got this infection so early in the transplant process, they believe she had it before she came in. They didn't think about looking for it because most people have lots of fevers and are really pretty sick. Brianna hardly ever had fevers before here - even now. But the doctors think because she was neutropenic (have low cell counts) for many months before she got here, it made her more suseptible and that she probably should have been put on an antifungal right away.

A chest x-ray was taken on Monday and showed more fluid around her lung. It's probably due to the fact that she is retaining water outside of her vascular system, so her hands, legs and knees are puffy. This would make anyone very self-conscious, let alone a teenage girl. But the added fluid has added to her lung infection. They wanted to be sure so an x-ray was taken sitting up and laying down to see if the fluid followed gravity. It was so painful for her and she had a terrible coughing fit, more so than normal. The pictures showed that indeed it was extra fluid and not a spread of the fungus.

Also her kidneys were working at 30% of their normal, which made it even more difficult to regulate her intake of fluids and output. That was the big issue with the low potassium diet and the 2 ounces of water (then changed to Gatorade) an hour. She's also on lots of medications that are toxic to the kidneys, so it's understandable that there would be some problems. But thankfully today, her kidneys look like they're recovering and are up to 50% of their normal function. Her lab report on her general blood chemistry shows a great improvement since the weekend. So her kidneys are beginning to heal.

Last night, our doctor was given the opportunity to have dinner with the worlds foremost physician in aspergillus research and Brianna was a main topic. She's on all the right antifungal, but he said that the best thing to fight these infections is a person's neutrophils - which of course are basically nil because her white count is so low. So it was suggested that I be given a drug that increases my body's production of white cells. Then, they harvest the white cells, which have lots of neutrophils, from me, irradiate them to kill my T-cells, which would fight her, and infuse them into Brianna to help in the fight in her lung. So far, that's the plan and I'll be on a blood collection machine for three hours tomorrow if all goes well. Then, those cells will be given to Brianna and hopefully they'll kick that aspergillus right in the a!@*!

The other question our doctor asked of the expert was had he ever seen an infection like this be resolved without surgery and the expert said rarely. When we were told, Brianna piped up and said she was going to be the exception. We believe she will!!

Also troubling us was the question of has something gone wrong with the grafting of the donor's stem cells in Brianna's marrow. The doctor was already ahead of us on this issue too. He said it was highly unlikey, but he was troubled by the drop in her count. So he had ordered a chimera test of her blood to see how many of the white cells in Brianna's body are hers and how many are her donor's. The results won't be in for a week, but if there are too many of Brianna's, they may have to harvest more stem cells from the donor and infuse them into Brianna again. This may mean more chemotherapy to destroy what she has already. Of course, if her counts start to increase over the next few days, then it may be a mute point - obviously that is our prayer!

We came into this thinking it would be a slam dunk since Brianna was doing so well in the beginning despite all the nausea. Even the doctors have said she is giving them a run for their money, because they'd come in our room on morning rounds and she'd be all smiles and no major problems. Then this infection hit and everything's been turned upside down. I say it again...it's unbelievable what you get used to and we're hoping surgery is out of the realm for our daughter. But they want us to just talk to the surgeons next week if it becomes a reality in the weeks ahead.

Again, we ask for your prayers and thoughts of healing and better news to come. I can't help but also feel resentful that the boy in the room next door - who was admitted four days after us - was discharged yesterday. I didn't say anything to Brianna (and she probably won't read this blog) but it makes me question why that couldn't have been us!? I know I shouldn't do that, but I can't help it. Prayers, positive thoughts and well wishes are needed ten-fold. And some better news about our beautiful daughter's ultimate recovery.

Day +25: It's been a rough few days

2007-03-18T11:21:00.000-07:00

We were so excited to see Brianna's white counts climbing and her ANC rising to 900. We thought only a few more days and she could have salads and fresh fruits and vegetables again. But as usual with this procedure, it's two steps forward one step back. In the last few days, it's felt like a giant leap back.

Brianna's white counts had reached 1.0, but slowly dipped back to .5 yesterday. John and Trevor were visiting and we thought it would be so great to go take a walk on the roof. However since her white count dropped, so did her ANC. She couldn't leave the room again. We were both disappointed. Her white count today is back to 0.6, and she is still not able to leave her room. But at least it is climbing again. We were warned this would happen, but on top of all that is happening it's so easy to get disheartened.

Next came more information about her lung infection. It's been up and down with how she feels and the amount of coughing she is doing. One of the doctors yesterday morning during rounds mentioned that she might have to have surgery to remove part of her lung. That was the first time this was mentioned and it frightened Brianna terribly not to mention me. He also said that instead of doing her incentive barometer breathing three times a day, she should be doing it 10 times an hour. Again that was the first time anyone told us that! It was so discouraging to hear. But Brianna was even more determined to use the breathing appartus.

The infectious disease doctor came in this morning to say that they hope to have the mold pinpointed by tomorrow to determine a more focused treatment. Right now she's on broad spectrum antifungals. What's so hard to accept is that only 10-15% of transplant patients get fungal infections. I'm left asking why this on top of everything else?

So Brianna's spirits were so low yesterday and mine weren't far behind. She feels like she is making no progress on expanding her lungs and for me, I am broken hearted that she has to endure all of this. It feels like it is all piling up. Add the fact that I think one of my teeth is absessed and the car we drove here died in the hospital parking lot, and it about sent me over the edge.

Then last night, one of the residents came in and said that they think Brianna has Syndrome of Inappropriate Anti-diuretic Hormone. In other words, even though her body is retaining water, her kidneys are spilling out electrolytes, protein and such as if she were dehyrated. So now she has to limit what she drinks to only 2 ounces of water an hour. This way they can regulate her water and sodium intake. We are in our first day of this restriction and she is doing fine for now. Her sodium levels in her blood and urine are holding. SIADH can be triggered by a lung infection and "hello" Brianna's poor body was prime for it. They've also added a wonderful little nugget of restrictions - potassium. She is allowed only 1 gram, or 1,000 mg, of potassium for the whole day! Try looking up the potassium content of foods and you'll find that this is a very difficult diet to follow - especially for a teenager.

So please continue to say prayers for us. Sharon, Sandy, Christy, Cory, Pam, Ingrid, Kitty, Jojo, Britt and Ann ~ your emails and comments mean the world to us. We have read them and cried, because they have come when we've been so low and needed encouragement. A big hug to all of you who have sent cards, letters and gifts - family and friends alike. They bring Brianna much joy. And to Brianna's Boosters who have helped us tremendously. We are so grateful to all of you who are helping us through this. We continue on and pray for a better turn in the road ahead.

Day +21: Brianna's Strength Continues

2007-03-14T08:20:00.000-07:00

Brianna continues to cough and struggle with the infection in her lung, but she is a fighter! She is determined to move about and stretch, even though she doesn't feel like it, and to use her incentives barometer, despite the pain. (The incentives barometer measures how deep of a breath you can take by blowing into a tube and raising a floating disk. It also helps expand the lungs, something her right lung needs!)

The doctors are narrowing in on what is causing the problem in her lung. Yesterday, Brianna had a bronchoscopy with lavage, which is not a fancy parisian bath, but is a bath of sorts . A small scope, or camera, was manuevered up her nose and down into her lung. She was sedated so she really didn't feel anything. I was able to stay in the room with her and watch the whole procedure. A very good and funny respiratory pulmonologist Dr. Cornfield made Brianna feel comfortable about the process and what the goal was - to squirt saline into her lung and then suction it out in hopes of collecting some of the infectious cells now residing there. The procedure went very smoothly and Brianna was great! A little sedation can go a long way in making you feel no pain and remember little. But the doctors were confident they got some of the targeted cells.

While I was watching, the nurse was asked if I was okay and if I would faint. There was no way I was going to leave and be given the opportunity to see the culprit behind my daughter's misery! Her poor lung has what looks like a big, gooey booger clogging one of her lung's passageways. I watched the saline being flushed in and then it being suctioned. The staff was really great with her and did a fantastic job. The samples were taken to the lab where they are put into cultures to see if anything grows. Twenty hours later, nothing has come up positive, but it could take as along as two weeks.

The best news so far is that her white blood count has risen to 0.9! Normal is 4.0 - 11. She's getting there! And, the more good news is the infection fighting part of her white blood cells, her Abolute Neutrophil Count or ANC, is 800!! It hasn't been that high in six months or more!! (Remember when it's below 500 your at high risk for infection, and when it's below 200 your body can't fight its own bacteria. Normal is 1.8 - 8.0.) So this is the best news yet!!

With a higher white count, we're hoping her body is beginning to get the upper hand on her infection. Her spriits were brightened even more when she was told she can wear a mask in the hall and go to the unit's outdoor patio and take off her mask and walk around outside!! Isn't that great? ALso, she was so excited to hear that when her ANC is above 1,000, she can have fresh fruits and veggies again! Yeah!!!! And, she can start going to school again here at the hospital - wearing a mask of course.

So we're hoping that each day brings us closer to her getting over this infection and her new marrow making more and more white blood cells and increasing her ANC to help in the fight. Thankfully, we're on an upswing on our journey.

Hanging in there despite the pain

2007-03-12T21:29:00.000-07:00

I am having a really hard time watching my daughter not only go through a transplant, but also have to deal with an infection in her lung. Several times today I've been asked how we're doing. Brianna is truly hanging in there. She's really loaded up with lots of pain meds, and so she is always drowsy. When she's more awake, the stabbing pain in her side comes and goes. So it is better that she be "out" for most of the day. For me, I am barely holding back the floodgate of tears. And what's so difficult is that there is nothing I can do for her! It's just not right that a 17-year-old should have to go through something like this and have a double whammy with a mysterious, extremely painful infection.

At this point, the doctors still do not know what it is that she has in her lung. She had a CT scan today and they were hopeful it would be more telling. But what it showed was either a fungal or bacterial infection, and most like a slow growing one.

Several infectious disease docs were called in to consult and they said that she is not showing the classic signs of infection. She has not had fevers and other signs of one either. Of course, there is the pain which says something is wrong. It stems from the fact that the infection is close to the lining of her lung. That lining is very sensitive, and if inflamed - ouch is one of the words that would describe it.

Since the CT scan was not definitive, which we were warned may be the case, the only real way to determine the cause is to get a sample of it. Well she's not coughing anything up. Therefore, between 10:30 am and 11 am, she will be having a bronchoscopy. Basically, she will sedated, and then put a tiny camera up her nasal cavity and down into her lung. Some saline will be sprayed in the lung and then suctioned out. We pray that tiny pieces of whatever is causing all her misery will be suctioned along with the saline. It will then be taken to the lab where it will be grown in cultures. They will be testing for all bacterias and fungi.

She is on some broad spectrum antibiotics and only one antifungal. But the infectious disease docs felt that those should be tweaked a bit to provide even broader coverage. So, she's been started on several new drugs in addition to the seemingly 20 other's she is already on. No matter what, we still won't have any answers or see any improvement until later in the week, maybe not even until following one. We've been told that the new drugs and the cultures will take at least 24 hours to 72 hours to see any affect.

Throughout this, the doctors here are really wonderful and caring. Dr. Rajni Agarwal was here early this morning, and then came to see us about 8:30 tonight. She's been here all day and then some. She is such a concerned physician and told us that even if we feel alone, we are not. She is having the nurses call her every six hours throughout the night to ensure that Brianna's electrolytes are in balance. (Over the weekend there was some disagreement as to whether she is retaining water or if she's simply just gained weight. Steroids can give you a ferocious appetite, which they did for Brianna. But, she was given some diuretics that dried her out too much.) So they are closely monitoring her fluid intake and output - oh yes everything here is measured! She along with the others who are taking care of us make us feel like we are people they care about and not just some faceless patient to try new treatment approaches on. She wanted us to know personally that she is going to find out what is causing all this and it will be taken care of!

Some good news is all this is Brianna's white counts were .6 on Sunday and Monday, and we're hoping they'll increase to help in the fight. Also, an ultrasound was taken of her internal organs and they all look great, even though she's getting lots of medications that are hard on the liver and kidneys. We were happy to hear this.

The notes and cards, and comments here on this blog, continue to give us strength to weather this stormy journey. Thank you and bless you for those. We pray for Brianna's continued courage and healing and for the doctors to determine what is behind the attack on Brianna's right lung. All your prayers and positive thoughts go along way for us and we are so grateful for them. Hug your families and don't take life for granted. Each day is precious.

Day +17: More White Cells

2007-03-10T15:07:00.001-08:00

Our days have been up and down since Thursday, with Brianna's bouts of coughing subsiding and then picking up. As long as we stay on top of the pain in her side with her pain medication, she's okay. But at least once a day now, it seems we get behind in keeping her pain down. The pain meds have been increased steadily during the day and at night since that awful day on Wednesday when she was hurting terribly. I just hate to see her this way and the doctors are doing all they can to keep her comfortable.

For the last several days, her white count stayed at 0.2. But today, they've increased to a whopping 0.4! We know it's not much, but it's a huge leap to us!! This means her new marrow is starting to pick up its production of white cells. The other lines, red blood cells and platelets, will take several more weeks before we see signs they are starting to come in. But we're happy about this bit of news.

Unfortunately, her pnuemonia has not gotten better. It doesn't look like it's gotten worse, either. But it would be nice to see some improvement. Brianna had another x-ray this morning, and the film looks pretty much the same. However, she didn't take as big a breath when she had the one done on Thursday, so it's a bit difficult to see if there are any subtle differences.

At this point, it's still not clear whether it's viral, bacterial or fungal. But the docs are guessing it's fungal. She's been on some heavy antibiotics and antiviral drugs and all of the cultures they've taken have come back negative for either of these. We are still waiting on the results of two tests, both of which will come back on Monday. One of them is a blood test to see if it's a fungal infection. She is taking an antifungal drug, just so all the bases are covered. And, it's been decided that on Monday she'll have a CT scan of her sinuses, chest, abdomen and pelvic areas. Fungal infections have a very distinct look on CTs, and since they'll be doing one of her sinuses and lungs, they decided to make sure nothing was going on in her stomach or intestines while she was under the microscope, so to speak.

Normally, we all have an immune system to keep any viral or fungal infections in check. We have antibodies to certain viruses, and most of us carry aspergillus in our lungs. Its a fungus that is found in the soil and is everywhere, blowing in the wind. But because Brianna's immune system has been nil for the past two months, any virus or fungus would have the opportunity to erupt. Add the fact that she's on a steroid, which suppress all immunities, and it makes a good environment for opportunistic growth.

So she is being weaned off the steroid and will be put on another immune suppressive drug - sirolimus. The steroid was being used to avoid graft-versus-host disease. She still has to avoid GVHD, so this new drug does the same thing. But it does not suppress the part of her immune system that fights fungal infections. So some of those new white cells can do their job. Of course, there's always side effects with many of these drugs. Sirolims is hard on the kidneys. She'll be checked often to ensure that it does not build up and cause any problems.

I just pray that we'll have a clearer picture of what's going on in her body and of the best course of action. Send some of those thoughts and prayers of healing. I know this is just one more bump in our long journey, but we'd sure love a little more smoother sailing.

What a difference a day makes!

2007-03-08T14:08:00.000-08:00

Our sweet daughter is back from a horrible day of pain just yesterday. She was made so much more comfortable last night with a big increase in her continuous pain medicine rate. That, coupled with an increase in the PCA button, meant that if she felt the slightest amount of pain, she could give herself a bump in pain meds. And, she could do it as often as every eight minutes. It made her sleepy, which was just fine with her last night!

Today, she is much better, even though the chest x-ray shows no change from yesterday. The doctors say that as long as the x-ray doesn't look worse, they are happy. Usually, it takes several days for these type of infections to clear up. So were expecting no big changes in the next day.

Also, her white blood count continues to stay at 0.2, and those weird rashes keep appearing and disappearing. The doctors have also told us they are not concerned with them unless they stick around.

Every day brings something new and thankfully today brought some relief from all the pain of yesterday.

Day +14: Buttons and Counts

2007-03-07T16:25:00.002-08:00

Brianna had a very rough night last night. The pain in her right side began to become unbearable. She was coughing and later had a difficult time moving. It all stems from the infection in her right lung. There is no way to tell whether it is viral, bacterial or fungal. They've taken every kind of swab and blood test they can, but we won't see results for several days. So at this point, she's on a very strong antibiotic for any bacteria and was put on an antiviral medication. This evening, they'll start the antifungal medicine. They are very careful to cover everything - and we thank God for that. But it may get worse before it gets better, for a good reason.

Yesterday, her blood counts showed that her white cells were 0.2. White cells are the first line to start being produced by the new marrow. Since her pre-conditioning regimen, Brianna's white count has been at 0.1 - which basically means no white cells. Today at day +14, these white cells could actually start coming in - and in fact we think they are. For the past two days it's measured 0.2. Now we're not jumping up and down yet. It may linger at that rate for the next week. But these new white cells could actually be contributing to her pain in her lung.

Because white cells fight infections, these new cells may all be going to her lung to fight whatever she has. When your body wages a war, the white cells will cause inflammation of that area. So this could be why she feels worse, but in fact she may be getting better. Crazy huh?

Also, today we learned that the count the lab is getting may not be truly accurate. Yes, there is a margin of error, but that's not the intriguing thing here. What could actually be happening is that most of her new white cells are all going to her lung and not floating around in her peripheral blood. Well they measure her white count based on what's in her peripheral blood. If they're all camping out in another part of the body, you're not going to see how many are really there.

Another reason they suspect her counts are coming in is she's had a mysterious rash appearing every now and again throughout the day on her ankles and calves. We've seen some pinkish spots appear on her shoulder, her arm and thigh. But it never remains long. This could be a first indication of graft-versus-host disease (GVHD). Typically, transplant patients get it in the liver, on the skin or in the gut. Getting a little of it is thought of as a good thing, because it means the new marrow is aggressive. Brianna has been on lots of meds for the past two weeks and will continue to be on new ones to minimize the degree of GVHD she gets.

For now, we're just trying to make her comfortable by easing the pain. I've never had pneumonia, so I don't know what it's like. But from her winces and yelps of pain, I can tell this is really hurts. The hard part for me is I just can't do anything to take it away. I am able to help her when she needs to go to the bathroom, but the stabbing pain she gets comes and goes and nothing I do makes it better.

The doctors and nurses have told her it's okay to push the button on her patient controlled analgesic machine. She has finally gotten used to using it today whenever she feels an inkling of pain and when she needs to get up. The only other thing we can do is say some prayers that whatever she has is cleared up soon so we can see her bright smile again and she can get back to those days of sheer boredom in the hospital.

Day +13 & Lots of Love

2007-03-06T07:42:00.000-08:00

Brianna was greeted this weekend by her grandparents, John and Trevor, who all came by on Saturday. We all took turns visiting so that not too many people were in the room at the same time. (The hepa-filtered rooms are meant to circulate the air every eight minutes with two to three people in the room. More people means less air circulation. We always try to err on the side of caution.) So it was great for Brianna to see them and really special for all of us to be together.

They brought some mail and one envelope contained lots of "Get Well" cards from Brownie Troop 2517. You see, we met a sweet 8-year-old little girl who was getting treated for a rare immune deficiency while Brianna was getting all those transfusions at John Muir Hospital in Walnut Creek. Caroline and her mother Terri shared a treatment room with us a couple of times and it was wonderful getting to know these two special ladies. Caroline shared with her Brownie Troop all that Brianna had to go through to get well. The Troop was also visited by one of our favorite nurses, Nancy Horan, who told the girls about Caroline's disorder and her treatment. One thing led to another, and they all drew beautiful cards for Brianna. It was so sweet!! Brianna enjoyed them so much.

My parents visit was also nice, because Brianna allowed my mom to stay with her for two days, while I got to head home and relax a bit. John and I went to dinner and then on Sunday, we all went to see the movie Wild Hogs. It was just what the doctor ordered! The movie is hilarious. It felt good to be home, but odd because Brianna wasn't there. You never really can relax until you know your children are healthy and safe.

When I got back to the hospital on Monday, Brianna was coughing. The doctors think she has a virus in her lung. That's what happens when your immune system is dropped to zero. Any type of virus floating around in your body can erupt, because all those good antibodies have been suppressed. She had a chest x-ray which did show a spot on her lung with some inflammation. She was also given an antiviral medication and got swabbed a second time. The first swabs taken came back negative for the viruses they checked. The second test will look for lots of other viruses.

Please say some prayers that she rides this out okay. Her new marrow should start making white blood cells between day +14 and +21. That should help, but until then we wait. She is in a bit of pain when she coughs, but some pain medication has helped. She is taking lots of deep breaths to also ease the soreness. Again, we continue to play the waiting game.

From One Survivor to Another

2007-03-02T18:26:00.000-08:00

Brianna had an exciting day yesterday! Yul Kwon the $1 million winner of last season's TV hit show Survivor visited us. He is such a humble, warm and generous man. We are avid Survivor fans and have watched most of the seasons of the show. Brianna asked questions about what it was like, and Yul sat and chatted with us for close to an hour. We told him that we had rooted for him during the show and that he was such a great player. He brought Brianna two t-shirts, a hat for Trevor and a signed picture. He wrote:

Brianna, It was so awesome to meet you - you really touched me with your spirit and energy. I'm glad to have you as my friend. All the best to you and I will see you soon! - Yul Kwon

Wow! What a great guy! Thanks to my hubby, who made it all happen too! He met him through his work and they got to talking about bone marrow donation and ultimately about Brianna's condition. You see, Yul is using some of his fame to bring greater awareness of the bone marrow donor registry, especially among people of ethnic descent. My husband learned that Yul had a friend in college who passed away and needed a bone marrow transplant. At the time, Yul told us that he wanted to do something then to get more donors registered. But it was not meant to be until some years later. Now, he has donated some of his winning, a little of his fame and much of his time to the cause. We are so appreciative of his visit. He also met several other patients on the floor, and the unit was abuzz with talk of the Survivor winner.

The excitement spilled into this morning too. We showed pictures to all the doctors and residents during their morning rounds. What a generous man and a great way for a teenager to spend some of her time in the hospital.

Thank you Yul! And, thank you my dear husband.

Day +7: Another Sleepy Day

2007-02-28T09:50:00.000-08:00

Today, Brianna is getting her second dose of rATG (see my last post about what this drug does). Because it has the potential to cause an allergic reaction, they prefer to use Benedryl as a pre-medication. Brianna is very sensitive to drugs of all sorts. When she was given half the adult dose of Benedryl, she was sleeping for hours. With the rATG, she needs the full dose. So to say she's sleepy is an understatement. She's been sleeping for a couple of hours this morning, and I don't expect her to wake until noon. That's okay though, she was up again several times during the night using the bathroom. She's on a diuretic for fluid retention, and it works quite effectively!!

Yesterday, was a busy day. (Brianna and I were actually musing about how fast time seems to fly here.) The hospital's school staff came and reveiwed all that she needs to be working on. Fortunately, one of the teachers has trigonometry experience, so Brianna can continue with that. For English, she's reading The Crucible. She has several worksheets she needs to answer after each act that she reads of the play. They've also given us the video, so Brianna can get better acquainted with it before she reads. (If you recall, the video starred Daniel Day-Lewis and Winona Ryder. Personally, I thought it was an okay movie.)

Also, she's working on her history and will get some art credits. They're going to bring the next art project down for her to work on, and she's excited. Lucile Packard Children's Hospital has an art program in which kids create pieces and then they're featured in a magazine, Healing Hearts. The art is also featured on a closed circuit television station throughout the hospital. You'll find TVs near the elevators and all over, with the kids' artwork shown in slide show format. It's really neat they have this. So Brianna is feeling better about getting all her 11th grade year credits completed, even though she's been out and sick so much.

We finally shaved her head yesterday. She began losing her hair on Sunday and Monday. It was hard for her to deal with, but she wanted me to buzz her head. We did and after her shower, some areas had very little hair if any at all. She is still beautiful and looks like a high-fashion model who's on a special shoot!

Her dad also came to visit late yesterday. He's been able to come up from Southern California every week and spend time with her and Trevor. Brianna enjoys his visits, and I think he was very happy to see how well she is doing.

Again, the doctors have said she is doing really well considering it's Day +7. Usually between now and day +10, kids are feeling their worst. Thankfully, she is eating well, getting lots of rest, feeling good with no pain and is laughing often. We pray this coninues.

Day +5 & a Taste for Rabbit

2007-02-26T15:24:00.000-08:00

As we look out our window, it is gray and rainy. Brianna and I have been sitting on the day bed reading magazines and catalogs and just taking it easy. Today, she had her first dose of rATG - a type of immunoglobulin to suppress the T-cells that came over with the new marrow. It has the potential to cause an allergic reaction in patients because it is reproduced in rabbits. It's early afternoon and she sailed through it with flying colors. She was knocked out for the first couple of hours due to the premedication of Benedryl that's required. But we are just so thankful about her progress.

We had a wonderful weekend and Brianna felt well on both days. First, John and Trevor came and had lunch with us on Saturday. And then John and I were able to sneak out and stroll through the town of Stanford, while Trevor stayed with Brianna for an hour or so.

Then on Sunday, Brianna decided it was time that I cut her hair. She began to lose a little, so it's quite short - maybe 1/2 inch long all around. She is still beautiful though! We planned on some snacks for our private Oscar's Party and watched the stars walk the Red Carpet.

Thankfully, we have had a nice last several days and look forward to many more!! Also, Brianna got a sweet gift from a friend who lives in Southern California. Alex, short for Alexandra, sent Brianna a belated birthday gift of Spa bath products from Bath and Bodyworks. Alex had gone to Paris, thought about Brianna and had written a postcard to her. She also purchased a lavendar bar of soap and a French Moulin Rouge mini poster for Brianna. She was so thankful, and it made her so much more excited for her Make-A-Wish trip to Paris. Something Brianna is very excited and looking forward to once she is out of the hospital!

God bless...Iva

Day +2 & Too Much Gatorade

2007-02-23T16:02:00.000-08:00

First I have to say Brianna is doing really well. All the doctors say she looks great, which is music to our ears! And she will agree that she is feeling a lot better today. Yesterday afternoon, she was feeling pretty poorly. We did manage to watch a movie "Sleepless in Seattle," and then Survivor. It was a tough choice between Survivor and American Idol, so we changed channels every so often to see who was voted off on Idol. It kept her mind off how she was feeling.

So, every day brings a new experience and today we learned something interesting. The picture at right is of Brianna's huge bag of TPN (total parental nutrition), or the Gatorade bag as we refer to it. It has all the nutrients she needs in fluid form. It's hard to judge the size in the picture, but we can tell you that it was one heck of a large bag! Today we learned that the size of the bag she got was actually for someone who was double her weight! No wonder she was getting up to go to the bathroon every two hours the first night she got it!! The bag they hung on her IV pole after that was about half the size. But no harm was done, and in fact she needed all those nutrients, because she was in a deficit.

Also, this morning Brianna was visited by the staff psychologist who took her through a hypnotherapy session. She really liked it and it will help her through some of her nausea. She said it reminded her a lot of her yoga classes she had in school last year. There was lots of deep breathing, relaxation and imagery. The doctor who led her through it has the most soothing voice. I was getting sleepy just listening!

I made a quick walk to Andronico's and got a few items for us to eat. The hospital food never changes and is not the greatest! Other than that, today was really uneventful. And we were happy with the fact that not much was going on!

Day +1 and Brianna Feeling Better

2007-02-22T11:36:00.000-08:00

Your emails keep us going, and we love reading them. Thank you for all your prayers and best wishes!

The doctors always have rounds about 9:15 am every Monday through Friday and today was no different. However, this morning we learned we'd be getting a new calendar with a new treatment course.

(Here is Brianna this morning a little while after she threw up, which always seems to make her feel better. I guess that's just the way kids are!)

The doctors told us they didn't get as much marrow from the donor as they would have liked, so they're changing Brianna's treatment slightly for the next few weeks. Ordinarily, she'd get several small doses of Methetrexate - a chemotherapy type drug to kill the donors T-cells that came with the marrow. T-cells are programmed by our bodies to fight invading infections, viruses and other foreign cells. So those donor T-cells will try to fight Brianna's body. Methetrexate will kill them, but in the process some of the new marrow stem cells will also be killed. The doctors don't want to waste any of those precious stem cells. So instead of the chemotherapy drug, she'll get a steriod for the next month and rabbit-ATG - both of which specifically kill the T-cells and leave the stem cells intact.

There are pros and cons to all this, but the pros far outweigh them. (And thankfully the cons are not that bad. The good news is she won't get as many of the terrible mouth sores that some people get with the Methetrexate and she may even get out of the hospital sooner. "May" is the optimal word, as with any medical care.

The cons are she'll have to temporarily go on blood pressure medicine (they say 80-90% of the kids have to anyway), she will have to have her glucose checked and she may get flu-like symptoms during the infusion of the ATG. She'll have five 8-hour infusions of it over the next four weeks.

All in all, we're happy to hear this!! If they continued with the regular protocol, she would have had to stay in the hospital longer, which meant a greater risk of infection. So we're all for getting out early and saving all those wonderful new stem cells!!!

Last night, they also put her on TPN (total parental nutrition). It provides all the nutrients her body needs in IV form. All BMT patients go on this, because of everything their bodies are being put through and the inability to eat. Basically, it looks like she's getting a huge bag of Gatorade pumped into her. She can still eat whatever she wants though! It did keep her up all night going to the bathroom every two hours. (They also want to be sure her body is well nourished for the new stems cells.)

Also, they hooked her up to a PCA (patient controlled analgesic) system. She's now on a super low dose of a pain killer, and so now if she's feeling any pain, she can push a button and get a little bump in the pain killer. She's only pushed it twice and it knocked her out both times and enabled her to rest, thankfully, especially the way our nights have been going lately.

So we wait and continue to pray that her new marrow begins to form and start producing those much-needed cells!

The Day We've Been Waiting For...Brianna's Transplant

2007-02-21T11:19:00.000-08:00

It is almost noon and Brianna's new marrow is almost through being infused. By 1 pm, she will have a new lease on life. This is the second of two bags that doctors were able to get from our generous 24-year-old female donor from somewhere overseas. All our hopes and prayers were answered with this unknown young woman who agreed to an immediate harvest of her marrow stem cells.

The doctors say it will take 24 hours from the stem cells to find their way to her marrow. The vast majority of the cells will be taken to the lungs, where they will just die and the body will carry them away. Those that make their home in the marrow, will immediately identify it as the right environment to stay and begin the long process of reproducing. In about two to three weeks, some of her blood counts will begin to show signs that the new marrow is making white blood cells - usually the first "line" to show up. Brianna's remaining "lines" will slowly start to come in during the following weeks.

Last night, I couldn't sleep much thinking about this miraculous process and all the steps this marrow must go through before it made its way to our daughter. Coming from overseas was a long way to travel and we thank God it make its here safely.

I am humbled by our donor's willingness to go through a minor surgical procedure. And, her willingness to spend the night in a hospital - which most adult donors endure. And that she welcomed the pain that may follow the harvest.

At the same time, I am so grateful for the wonderful doctors and nurses who are taking care of us here. The Stanford Children's Hospital Bone Marrow Transplant unit is filled with caring, compassionate people! For the past two days, Lindsay has been our sweet nurse taking care of us and answering our calls from the nurse call button.

During Brianna's transplant, her vitals are being taken every 30 minutes and she's hooked up to a heart and respiratory monitor to ensure she stays stable. Her blood pressure did rise a bit with all the fluids and marrow they were pumping into her. But it was quickly rectified with a dose of Lasix (a fast acting diuretic that had her running to the bathroom several times within 15 minutes) and a blood pressure medicine that she swallowed.

She's doing great now and so we wait. Thank you for your continued prayers! They're helping!!

Transplant Day to be Weds Feb. 21

2007-02-20T15:16:00.001-08:00

Brianna is definitely up and down with how she feels. Saturday and Sunday were the most difficult with the high dose of chemo she got. Plus the effects of the radiation are catching up with her.

It's so hard as a mother to watch them pump your child full of this horrible toxin, to smell it on her and then to see her so sick because of it. Even harder still is being helpless to take away the pain. And I mean really take it away. Massages, soothing music, reassurances, pluggin in and unplugging her IV pole when she's doubled over in pain from her stomach and going to the bathroom are just the small things I can do. But I know it's all to make her body ready to receive her new life-giving marrow.

The donor is from overseas - we don't know where. She was harvested today and a special courier brings the precious substance by hand to the hospital. They don't expect to receive it until 7 pm tonight. They have 72 hours to infuse it into the recipient from the time it was taken.

In Brianna's case, the donor is blood type A and Brianna is O. So they have to take out as many of the red blood cells as they can in the marrow they extract, so Brianna's body doesn't immediately reject it. This process takes several hours. So it was decided that instead of subjecting Brianna to the infusion in the middle of the night, they'd wait until 8 am to start. That way the doctor will be here and she won't be woken at 1 am to have her vitals checked every 15 minutes. I know I will be relieved when I finally see that bag hung and the new marrow going into her bloodstream!

So for now, I'm just trying to encourage her that she will feel better in the coming days. It make take another week or two, but some of the nausea and stomach pain should subside. Sleep is a welcome respite for both of us, when we can manage it.

Thank you for your lovely emails. They really do help us through.

Take care....Iva

Days 4, 5 & 6 in the Hospital

2007-02-17T16:40:00.000-08:00

Day Minus 3 to transplant - My sweet daughter has been feeling nauseous for the past three days. She's eaten a small amount about once a day just because she's afraid of it coming back up! The doctors have given her every kind of medication possible to stop it, but her stomach has always been very sensitive. She is trying to cope with it as best she can with relaxation music, back rubs from me and cool wash cloths on her forehead.

She finished up her TBI (total body irradiation) and had her first dose of chemotherapy today. Obvioulsy, she's not feeling great after all that. She only has one more dose of the chemo tomorrow and her body should be ready to accept the new marrow on Tuesday.

She's been resting alot to pass the time and has watched a DVD or two. I admit, I get sucked into the kiddie movies. She watched Ice Age, which was a cute movie, among them. She's also re-reading the Joy Luck Club, by Amy Tan. She loved that book and decided to read it again. She's also got her next book, The Hundred Secret Senses, which Brianna hopes to read once she's feeling better. Plus, she's worked a little on homework. There's plenty to keep her occupied, if only she felt a little better.

Outside of helping Brianna, I've been working on the computer, practicing a little calligraphy and reading a Michael Crichton book, Prey. It's so good, I just get lost in it! I couldn't put it down last night. I've read almost the whole thing in four days.

John and Trevor came to see Brianna today. Their visit was short, because Brianna just couldn't handle talking or thinking, for that matter! They brought us some mail, a new bed foam pad for me (my back is killing me from sleeping here), our washed clothes, some more Wheat Thins for Brianna and two more books for me.

I'm hoping Brianna gets lots of rest tonight. Unfortunately, she has another round of chemo tomorrow and that should take her through the worst of it! We pray that it does!!

We appreciate your supportive comments and warm thoughts and prayers. God bless....Iva

Here's what our world looks like...

2007-02-16T10:58:00.000-08:00

Brianna's bed with window scarves hung to make it more cozy and less sterile-looking.

A banner I made using scrap book papers, vintage paper, dresden and Wendy Addison's letters that spell "IMAGINE."

Day 1, 2 & 3 in 2North: the BMT unit

2007-02-14T19:28:00.000-08:00

First I will tell you that despite being sick, Brianna is doing well. She is not tolerating the radiation well, but she is a trooper and the docs have prescribed some medications that should help with the nausea. They say she is doing great, which is always a relief to hear. Secondly, Happy Valentine's Day to you all.

DAY 1
Our first day was spent getting labs, another chest x-ray and making sure her lung shields fit. To do this, she was put in the radiation chamber with two pieces of thick lead that are shaped like her lungs. They are screwed to an acrylic block and then hung from a harness in front of her chest. They took an x-ray to be sure they covered her lungs and then they drew two black outlines on her chest and back to be used as guides during the radiation.

After that, we decided to have lunch outside, since they told us that once she steps foot in her room, she would not be able to leave. Her ANC (absolute neutrophil count) - or infection-fighting part of her blood - was 100. For most of us it's above 1,000, and when it gets below 500, you're at risk of infection. Below 200 and you're at risk of infection from your body's own bacterias. Brianna's has been below 500 for the past three months! So enjoying some outdoor time before being confined for 50 days was a nice beginning to her treatment.

My husband met us for lunch, helped us unload the car and talked to the doctors about her care. It took three trips! And, we didn't even fill the room. They are pretty large - thankfully - and we have a nice big window that looks out at a garden patio with blooming azaeleas and a small tree ready to bud and then beyond onto the city of Palo Alto. I will try to post some photos of her room and what she looks like in her radiation treatment area. But, we kissed him good-bye and settled in.

So after starting her on every medication known to man, and having half of the hospital's staff parade through our room, we ended day one pretty uneventfully. All the departments come by to tell us what they do and how it will help with her treatment. It's a necessity for us, but can be very tiring meeting and listening to all of them.

DAY 2
Day 2 started with a 7:30 am appointment for her first radiation treatment. About an hour after, Brianna got her first twinges of nausea and couldn't keep her breakfast down. It was the same story for her lunch and dinner, both of which were minimal because she didn't feel like eating. And, several more departments stopped by, which added to Brianna's and my fatigue. Thankfully, she slept well, even though the nurses have to come in and take her vital signs every four hours.

Today, Brianna woke up feeling pretty good. But, once she began her radiation treatments, the nausea and vomiting started again. Poor thing has only eaten a half a bagel all day! She's been given some other medications to hopefully help make her feel a bit better and they should kick in tonight. The good news is she's more than half over with the radiation! She's pretty pooped for today and knows it won't get easier tomorrow. I've given her lots of back rubs which seem to settle her stomach and nerves. John is coming by to celebrate Valentine's Day with us and drop off some items we forgot (can you believe my cell phone charger and the laptop charger!?), so we plan on having a nice quiet evening together in our room.

Thank you for your prayers! They are helping!! Blessings....Iva

Tomorrow We Go to the Hospital

2007-02-11T14:03:00.000-08:00

Preparing for a 50-day stay in the hospital is not easy, especially when you have to be sure each piece of clothing or pillow case or blanket is run through the dryer on high for at least 20 minutes and then immediately stored in a new plastic bin or large ziplock bag.

Here are just a few of the bags we've filled with clothes for Brianna. Thankfully, she can wear her own PJs. But we have several bins of stuff to keep us busy, some Pelegrino for Brianna to drink (she's not fussy!?), no-sugar added hot chocalate for me and individual bags of Wheat Thins for her to snack on.

We also put together several months of calendars with Sharon Jones. She is a gracious, generous woman who heads up Brianna's Boosters, all women who I met in the past year and a half since we moved to East SF Bay. They are helping John and Trevor on the home front: taking Trevor to school many days (John is often at work by 7), bringing dinners some days and performing those daily errands that have to be done before John returns from The City or the hospital. Their generosity is unbelieveable. It's hard being on the receiving end, but we thank God for them.

Every other week my mom and dad are staying at our home to help out and I couldn't imagine going through this without their support. Of course, I couldn't do this without my loving husband and our dear son Trevor. John will visit after work regularly bringing various supplies, taking dirty laundry home and bringing clean--heated and immediately bagged--back. Stanford is about 1 1/2 hours from his office in the financial district and about the same from our home. Trevor won't be able to visit as often due to the risk of illness brought from school. He has risen to the challenge on the home front, rushing home from school to take care of the dog and taking on extra duties after school.

I also want to say thank you to Susan Johnson, who is an angel for us. She has such a kind and giving heart, and sent us a beautiful Rosary Prayer doll made by one of my PFATT sisters on eBay - a chat group that stands for primitive folk art tea and talk. We have also packed the rosary.

With prayers, support and love from our family and friends, we begin our journey.

Our Latest Hospital Stay

2007-02-09T11:04:00.000-08:00

Wednesday afternoon, Brianna came down with a low-grade fever. Being so close to transplant time, we couldn't take any chances and she was admitted to the hospital.

There were no needle sticks because she had a new central line. All sorts of cultures were taken to rule out viral infections, bacterial and you name it!

So we stayed the night Wednesday and by the next morning she was feeling fine. Thankfully, nothing grew in the cultures which meant she was viral and bacteria free! Plus, no more fevers! The docort said it may have been due to the anethesia and the breathing tube used - since she has never had either one and her body was just trying to recover. So we left Thursday afternoon, just in time to pick Trevor up from school and greet my parents at our door.

We are now working feverishly (scratch that word - we've got to keep our sense of humor) to get ready for our long stay in the hospital. I'll keep you all updated and try to post photos too.

The real journey begins in just two days!

A Central Line & Brianna is Great!

2007-02-06T07:01:00.000-08:00

Late yesterday afternoon, Brianna had her deep vein central line placed in her chest. This is a tube that is tunneled under the skin near the collar bone with one end of the IV tube placed in a vein almost to the heart and the other coming out of the body several inches above the breast. She was very nervous about it.

(PHOTO: No, this is not her after the procedure! On the Saturday before, Brianna shows off her new haircut in front of the Lucille Packard Children's Hospital at Stanford. She has my decaf coffee and a container of Stanford's delectible fries. She loves them!)

As we waited for her to be called into pre-op, Carol (an educational nurse from the pharmacy) came and taught us everything we needed to know about flushing the line with Heparin and changing the dressing. I have to admit, we were both a bit squeamish about it. Poor Brianna looked like a deer caught in the headlights. Her eyes were so big! But she and I were able to practice on a mannequin chest and that helped a lot. The most important part is hand washing and swabbing everything down with alcohol so it's clean, clean, clean!

They called her into surgery and tried to start an IV in her right forearm. Her arms have been protesting for the past several weeks adn this was no different. They couldn't get it in. I always hold Brianna's hand when she gets an IV inserted. But we both said, "Okay, enough. It's not going to happen there, try the veins in her hand!" Finally they listened.

It was obvious that she needed this central line!! No more needle sticks and digging to find the vein!

Brianna was grossed out by the idea, and soon after coming out of surgery. She was still groggy and was pouting, "Yuck, I have a central line!" But seveal hours later, she was glad it's there! The pain is minimal now and will be gone after several days. And she didn't feel any pain from the bone marrow aspiration. She'll start getting these once a month while she's in the hospital during the transplant.

Oh, and I have to gloat. One of the nurses in the surgery recovery room came up to me and said that she and some other nurses noticed how beautiful Brianna is. "She looks like a high fashion model! Her hair cut and eyes..she's just gorgeous." When I told Brianna, she smiled and said, "And mom you didn't like my hair." We laughed.

So, now were on our way to the big day when she gets new marrow! Monday begins the journey!

We have a 10 of 10 Match!!

2007-02-03T18:31:00.000-08:00

Everything works out for a reason...

With all the switching and waiting and cancellations of donors, a 10 of 10 marrow donor was found!! We are so elated!! She is a 24 year old woman. Even though several 9 of 10 donors were lined up, the wonderful marrow search coordinator at Stanford kept requesting more samples. She said there was one that looked promising, but couldn’t make her appointments for a blood draw. She said that until Brianna is admitted, she will continue to search and test samples. Thank God for her!!!

This was obviously meant to be, even though the ups and downs were really tough on us emotionally. And thankfully, this new donor responded to the urgent request and agreed to donate her marrow on Feb. 20! We’re still waiting to hear if she’s passed her physical, but Brianna is now slated to be admitted on Monday, Feb. 12. She will go through a week’s worth of conditioning (total body irradiation and chemotherapy) and then on day 0 (Feb. 21) she’ll get her new marrow!! We are still thanking the man upstairs for the wondrous turn of events! This means Brianna will have much less chance of Graft-versus-Host Disease, she will most likely have an easier recovery and will overall have a better outcome.

On Monday, Brianna will get a central line – which is a deep-vein IV placed in the chest and which will remain in place for some 6 months or so. She’s a little nervous about it, because she’s always been so healthy and has never had stitches or surgery before all this. At the same time, they will be doing another bone marrow aspiration to check her marrow. BUT, she is so glad it’s finally happening!

Thank you all again for your prayers. Now the really hard part will begin.

Again, we are so thankful for this new donor and her willingness to step up to the plate so quickly for a complete stranger. She is donating her time, some pain and needle sticks, and her much-needed marrow. Wow, I am just blown away by the generosity of this person and I thank God for her.

God bless....Iva

PS - Thanks again to all those who donate blood and platelets.