Tests now confirm that Kate has Mixed Lineage Leukemia Rearrangement (MLL-R). Chromosome 11 has an irregular gene ("leukemia gene") that has attached itself to another irregular gene. Infant MLL is an aggressive cancer and survival rates are close to 40 percent. This type of leukemia has characteristics of both Acute Lymphoid Leukemia and Acute Myeloid Leukemia, but she is being treated with the ALL protocol. Kate is on day 22 of a 33 day "induction," another term for her first round of chemotherapy. After this induction phase has ended and Kate's blood and platelet count have recovered, she will have a bone marrow draw to test her response to treatment.
Kate is a little superstar! She never ceases to amaze me with her patient endurance. She has tolerated the first round of chemotherapy considerably well. She is taking six medications for her chemotherapy and will receive her third spinal tap at the end of this round. She also takes several other medications to counteract symptoms (three antibiotics, anti fungal, high blood pressure meds, pain meds, anti nausea, Benadryl...am I forgetting any?) Even though the chemo is highly toxic, she seems to suffer the most from the steroids. She had a little temper for a few days, but its leveled off and sweet Kate is back. One of the doctors told me she's never seen a baby so happy on steroids.
Luckily, we haven't seen any mouth sores or nausea. Unfortunately, Kate has the worst diaper rash in history. Since she doesn't have any immune system, it won't heal until she finishes up this round of chemo. In the meantime, we are doing all we can just to keep her little bum happy. Yesterday, I noticed hair falling out. It's all over her crib and my clothes. Tonight when I gave her a bath and washed her head, hair kept coming out in my hands. Her pretty eyelashes are starting to fall out, too.
We are counting our blessings and continue to be hopeful about Kate's outcome. Kate is a wonderful little baby and reminds us daily what's most important in this life. Chris and I love our two daughters! We are grateful for the gospel and the peace it brings. Our prayers are being answered and we have seen many miracles over the past few weeks.
2 comments:
We have been praying for Kate and your little family. Please know how much we love you guys. So glad to hear that her little light is still shinning strong despite all the meds. What a blessing.
Sending you love, and comfort to help carry you through....
the Hulse clan.
Corn starch has done wonderful things for my kids when they have major diaper rash. No idea if it will work with all that sweet Kate is combatting, but thought I'd mention in case it could.
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