Three-year-old Faye was diagnosed with Acute Myeloid Leukemia on April 11, 2011. After 135 days in the hospital, Faye was able to spend 3 years at home. On September 5th 2014 she was told that she had relapsed. She was able to achieve a second remission and had a bone marrow transplant on Oct 17th 2014.


Thursday, May 26, 2011

A Big Decision to Make

Nick and Stacey met with the Bone Marrow Transplant specialist this morning. This is what they learned:
Is it possible to take marrow from Nixon?
Nixon needs to be at least half the weight of Faye in order to take enough marrow from him. Faye weighs 30 lbs. and right now Nixon weighs 12 lbs. The window of opportunity for the BMT is right after her 3rd round of chemo which will be somewhere towards the end of July. So, the decision whether or not to do it depends on how much Nixon will weigh at the time. Can he gain 3 lbs in about 6 weeks?
What are the benefits of having the BMT?
The biggest benefit is that it gives Faye a better chance of not relapsing and more time in between if she does relapse. They just learned that relapse is especially bad news because it is much harder to get rid of the second time. New genetics can keep the chemo from working as effectively. Another possible benefit is the chance that the new bone marrow can help attack any cancer cells it contacts.
What are the risks to Nixon?
There aren't any risks to Nixon other than the risks involved with going under anesthesia. The bone marrow will be pulled from his hip bones just like during Faye's bone marrow biopsies. He will be sore for a few days but that should be it.
What are the risks to Faye?
Of course, the worst risk is death. But the mortality rate for BMTs when the donor is a sibling is less than 5%. So, the odds are good. But, she would have to get much harsher chemo before the transplant that would kill off all of her original bone marrow. So, that would be a scary time. Her entire immune system would have to be rebuilt (all the shots she got as a baby, etc).
How will this change her time in the hospital?
After the BMT, she'll have to stay in the hospital for 5 weeks. Then, she needs to stay close by for the next 100 days. That puts her probably sometime in December before she could go home.

So, it's some new information to digest and pray about. Although they can't make the decision official until they see how much Nixon weighs. In my own opinion, I believe that baby will be the right size. It makes sense why after two small babies they would have one so much bigger and gaining so quickly.

Something else I've been noticing is how much Faye has had to grow up since being diagnosed. When her Grandma Lori was there to visit she said how Faye seemed like an old soul. She was very matter-of-fact about her situation. When looking out her window at the park she said "When I get better I can swing real high." She's adapted to her new (temporary!) life and learns to submit to each new hardship. (She stopped fighting her eye drops and even started to say she liked them! "They tickle my eyes.") I even think she looks so much older now without her hair. Sometimes it's hard to remember she's only 3! But, it's comforting to know she is the same Faye who loves to give everyone a fashion show. Stacey says she is the fashionista around the hospital and everyone loves to see what she's wearing, which she picks out herself. Here's a picture of her doing this same thing before she got sick.


Lark (SparkyLarky) said...

I know all will be in the Lords hands. And by going to the temple, I am sure he will let them know what his plan is. As always, your family is in our hearts & prayers!

Tracy said...

Wow! So much for them to decide! As always you are all in my prayers and a special prayer for help in making such a huge decision. Like Stacey said, "everything happens for a reason". Nixon is an absolute blessing!

Eric and Jenny said...

Everytime I think about little Nixon and the miracle of him coming at the time he did and a match for little Faye it's a miracle it really is. You guys will make the right decision, follow your hearts, and promptings of the spirit and you will know what to do. This must weigh so heavy on your mind, along with everything else. Hang in there my sweet friends, love you lots. You never leave my minds, my thoughts and prayers are always with you....

Isabel said...

Every time I read her blog, my testimony grows of how Heavenly Father is always there for us, and gives us the tools to get through hard times. I hope you can feel his loving arms around you! What a strong and amazing little girl she is! Im so grateful for the promptings of the Spirit to help us make the right decisions. I will pray really hard for you! Wish I could give you all a big hug! LOVE YOU!!