Macy continued to have a good evening yesterday, but this morning is turning out to be rough. She received some platelets last night, which was uneventful, but at about 1am her blood pressure started creeping up, and around 4 am she started with a lot of pain. They just gave her some morphine, and it seemed to be working, but she’s still crying out in her “sleep” and tossing and turning. Maybe the blood pressure issue was a sign of the pain starting (because I think it’s stable enough for the doctors,) Her hemoglobin has dropped again, so she’ll get another blood transfusion when we get back to the room. They are about to sedate her for a CT scan (sedation only needed to keep her still, but that’s okay with me, because it’ll keep her out of pain momentarily.) The CT scan is to measure a baseline bone density, since the chemo will eventually take a toll on her bones. After CT, she’ll have her Day 3 chemo. We hope and pray that she does as well with this drug, as she’s done with Days 1 and 2. The doctor just came in to explain that she has several reasons to be in pain (from the general chemo, the chemo in the spine, the spinal tap, the bone marrow aspiration from the hip, etc…….) I’d want some morphine too; poor baby! A few side notes: Her treatment plan is “Protocol 16.” St. Jude started with Protocol 1 back in 1962. Protocol 16 only had a survival rate of 20%. Protocol 16 has a survival rate of 94% with typical children. Children with Down Syndrome don’t respond as well to the treatment, but the doctors get better at fixing these problems every day. Day 15 is a HUGE day in her treatment. They will repeat the spinal tap and bone marrow aspiration to see if the chemo is working. At that time, she will be given her risk level (either good, standard, or poor prognosis.) Obviously, we are very anxious for DAY 15! I don’t even remember if I ever stated her full diagnosis. Macy has B-Cell ALL (Acute Lymphoblastic Leukemia.) AND SHE’S READY TO FIGHT IT AND BE BACK HOME WHERE SHE BELONGS!!!!! Thank you to all who have selflessly given of themselves in prayers, thoughts, love, and support for our little fighter! She is one loved little angel, and we are overwhelmed by everyone’s response! Every parent wants their child to be a “fighter” when trying to battle something of this nature. For those of you that know Macy personally, you know how much of a fighter she truly is. And for those you who don’t, rest assured that this little girl is going to win the battle!
Posted on: Wed, 09 Oct 2013 14:27:21 +0000
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