Thursday, March 22, 2007

Brianna's White Count Drops, Graft Failure Possible

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.

11 comments:

Christy said...

My sweet angels! I know this is a crippling blow, but you will prevail!!! No matter what the news, you will overcome!!! I am sorry this is so painful, and I wish I could take the pain way for you. Many prayers in Pfattland are being said. We love you both! Christy

CoffeyHouse Collection said...

My prayers are with Brianna & the family.

Jan

Kingfisher Farm said...

Iva I am praying for you to feel relief! Brianna, I am praying that the spring sunshine will kill the fungus! That your joints are free of the fluid, that you feel so good you can dance and create and sing.......and that pink and blue ponies entertain you in your dreams! HUGS Pam

Kitty Forseth said...

Oh Iva.. I wish I were there to just hug you. There is no pain like watching our babies suffer. She is strong and determined and she will beat this! I wish I had words to ease what you are going through.. just know that I, and many others are praying for you and Brianna.

I'll pray that angels watch over Brianna as she sleeps, that she is able to rest peacefully and gain strength. I will also pray that tomorrow will bring renewed spirit to you both.

Hugggggggssssssssssssssssssss...

Love,

Kitty

Disgusted Cats said...

Oh, Iva, dear, may God give you and Brianna the strength to go on fighting, and may He lift your hearts and spirits, as only He can do. I know that you are weary!
We continue to pray for both of you.
Love, Joanne

Sam I Am said...

tons of healing prayers on their way to you Brianna...
wishing we could wave our pfatt wands and help with the pain :(
love you both..
xoxoxox
sam

Zinnia said...

We are here Iva, pulling for you Brianna, praying for your recovery, and for your continued strength. Brianna...you are a gift to your mother, and she to you. Hold on to each other, I know it will get better. Love you both! Zinnie

Johanna Parker said...

Dear Iva.... I don't know you, but I've now read of your daughter's battles, and I am sending you both healing thoughts of love and strength in these trying times. And keep close to heart that thoughts are energy, and energy flows where attention goes. So keep thinking positive thoughts for Brianna's recovery, visualizing an outcome of wellness. I will do the same, and together we will all hope for the very best! Hang in there and be strong. Happier days are to come :)
~Johanna

Troy's Mom said...

I am Troy Griffiths' mom and I have been hearing about Brianna for quite awhile. She used to call this summer and they would talk quite a bit. I have not met her, of course, but what is strange is that I have dreamt of her and have often prayed for her strength. She sounds like a kind and fun person to be with. My son really likes her, and I'm so glad to see that they get along so well so long as friends. I know Brianna is good, since she appreciates Troy - he will follow my family and be an artist in some form someday, I predict - - Something I know you and Brianna can both appreciate...no? I hope doesn't see this or he'll kill me. Anyway, you are a wonderful mother and I will keep your family as part of my daily prayers. It hurts to think of the pain your daughter and your family are experiencing. . Karen McMillen (Griffiths)
email kgaosta@yahoo.com

Tamsen said...

Iva, Brianna and family, I am now connected to you all, thanks to Tilma. I think of you lots. You are in my prayers:
BRIANNA, do not give up hope! BELIEVE that you WILL get better. BELIEVE in yourself. BELIEVE in POSITIVE thoughts and through this WILL come POSITIVE results. I BELIEVE in you, BRIANNA. I am praying for your STRENGTH because I BELIEVE in you. Get well soon.
Love, Tamsen

Debbie said...

Oh Iva, my best friend, you are always in my thoughts. Tom and I are sending our love and strength. May it engulf your body and swirl around you like a tornado on a mission. Brianna, hang in there girl, you are strong and you will get better. Think positive thoughts and believe in yourself. Tom and I believe in you and know we will be talking about these days some day in the future when were visiting you in SFO. WE LOVE YOU BOTH!

many hugs and kisses....

Debbie and Tom