Wednesday, February 28, 2007

Day +7: Another Sleepy Day

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.

Monday, February 26, 2007

Day +5 & a Taste for Rabbit

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

Friday, February 23, 2007

Day +2 & Too Much Gatorade

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!

Thursday, February 22, 2007

Day +1 and Brianna Feeling Better

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!

Wednesday, February 21, 2007

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

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!!

Tuesday, February 20, 2007

Transplant Day to be Weds Feb. 21

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

Saturday, February 17, 2007

Days 4, 5 & 6 in the Hospital

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

Friday, February 16, 2007

Here's what our world looks like...

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."

Wednesday, February 14, 2007

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

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.

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 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

Sunday, February 11, 2007

Tomorrow We Go to the Hospital

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.

Friday, February 9, 2007

Our Latest Hospital Stay

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!

Tuesday, February 6, 2007

A Central Line & Brianna is Great!

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!

Saturday, February 3, 2007

We have a 10 of 10 Match!!

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.