Saturday, March 24, 2007

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

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.

10 comments:

Kitty Forseth said...

Hello Iva and Brianna,

I am in awe of your strength.. having stood by my parents under similar circumstances I know how incredibly depleting it is.

You have people praying for you all across the country.. and I hope that you will feel them reaching out to you. Take strength from those of us that have it to give.

I say again, you are amazing, strong and beautiful women.. both of you. You will get through this!

Love you with all of my heart,

Kitty

jojo said...

Iva and Brianna!! Now you KNOW wenches always WIN and I am sooooooooooooooooo proud of you both....Now get back in that ring and KEEP fighting, (I am humming the Rocky tune as I type!!!) Try to stay positive, I know it is hard, and it IS going to be ok!! I have faith and prayer does work....now drink the raw eggs and put those boxing gloves on!!! Love you both .... jo

jojo said...

Iva...Noelle told me she send her love and is praying for both of you!!

JoEllen said...

Iva thank you so much for doing this blog. There are so many people praying for Brianna and family. Know that there is a huge circle of arms surrounding you. Just like the biggest hug ever. We care about you. Lots of prayer and tons of good thoughts headed your way. I wonder if you could bring the sun into Brianna with some grow lights?

Much love JoEllen

Kathy's Prims said...

Still praying for you and your family and sending good vibes! Stay strong and positive. I called in my affliction, and the Lord heard me and saved me from all my troubles. Psalm 34:6.

ToanOanh said...

Dear Iva and Brianna,
I am new in your tennis group, heard lots of good things about you. When Brianna got sick, I also know what is going on. Even though you don't know me, but trust me that my family and I are praying for Brianna, you and your family. Be strong, stand tall now. We all are beside you and supporting you. Psalms 103:1-3
A new friend, Wanda

Kitty Forseth said...

We are all important to God, even The Odd Sparrow

A little Spanish boy in Vigo who became a devout Christian was asked by an Englishman what had been the influence under which he acted. “It was all because of the odd sparrow,” the boy replied. “I do not understand,” said the Englishman in surprise. “What odd sparrow?”
“Well, Senior, it is this way,” the boy said, “A gentleman gave me a Testament, and I read in one Gospel that two sparrows were sold for a farthing. And again in Luke, I saw, ‘Are not five sparrows sold for two farthings...?’ (cf: Matthew 10:29; Luke 12:6)
“And I said to myself that Nuestro Senior (‘our Lord’) Jesus Christ knew well our custom of selling birds. As you know, Sir, we trap birds, and get one chico for two but for two chicos we throw in an extra sparrow. That extra sparrow is only a make-weight, and of no account at all.
“Now, I think to myself that I am so insignificant, so poor and so small that no one would think of counting me. I’m like the fifth sparrow. And yet, oh marvelous, Nuestro Senior says, ‘Not one of them is forgotten before God.’ I have never heard anything like it, Sir. No one but He could ever have thought of not forgetting me.”

Judith Weber said...

Hi Iva and Brianna,
Greetings from your friends in Florida who are following your journey to health.
Your family's love and dedication to your health, Brianna, and your own unflagging determination shine through every posting and serve as a beacon for all of us.
Tom and I are with you all the way and look forward to hearing about Paris.
Love,
Judy

heartsinohio said...

I am a friend of jojo's and she told me what you are going thru. I just wanted to add my prayers to your daughter. I pray she will soon have her body healthy again. Life can change so quickly, and good health is everything. Take care and know people care. Pattie

Stacy said...

Dearest Iva, Brianna & family,
We are continuing to keep you all in our thoughts & prayers. May God bless you with a speedy & complete recovery.
hugs, stacy