Day of Rest

Wow, the days have just seem to run by this last week and I haven't updated on here! Stew's mom came out here to help out on Tuesday night. She's doing a deep cleaning of our apartment, which I firmly believe I will never have the time to do again :). Stew has been going back to school and work and our lives have settled into a strange sort of normalcy. We've been meeting a lot of parents whose kids have AML--a 5 month-old, a 2 1/2 year old, a 17 year-old, and we have yet to meet the parents of 4 month-old and 10 month-old who just moved into our unit. It's almost suspicious that we've had so many cases of this rare cancer affecting similarly-aged children in the same area at just about the same time.

There are basically three tracks or prognoses that the doctors tell us are possible: a good, bad, or neutral prognosis. They correspond fairly well with genetic abnormalities, which occur in about 50% of people with AML. Right now, they're doing what's called a FISH assay (Fluorescence In-Situ Hybridization) to see what kinds of mutations Andrew's chromosomes have, if any. If he has good ones and responds well to chemo, he'll be put on the "good" track and just do a few rounds of chemo. If he has neutral mutations and responds well, he'll also be on that track. However, if he has bad mutations, he'll have to have a bone marrow transplant, even if he responds well to chemo. Of the people we've met here so far with AML who have been here for several months, one had good genetics, responded well, and is leaving soon (the 2 1/2 year-old). Another had a bad FLT-3 mutation and is recovering from her bone marrow transplant (the 17 year-old).

Andrew has been doing really well. Until today, I hadn't noticed any symptoms from the chemo and he's been a very smiley kid. I think he just gets a kick from having doctors and nurses come in all the time. This morning, though, he woke up with a pretty hoarse voice, which makes his cries sound pretty sad. His platelet count is pretty low (12,000 rather than the normal 150-200,000), so he'll get a transfusion again today. Makes me really wish I could donate blood, so I can add back into the pool.

(This is Joan the Grandma.) Lizzie is still nursing Andrew, so he is getting the best nutrition and the closeness to his mom that he needs probably more than anything for his general well-being. Stew and Lizzie are facing all this as an effective team. Lizzie pretty much has to live in the hospital with Andrew, and Stew keeps them both company when he can.

You would probably like to know that Andrew is finished with two of the chemotherapies of this round. He will finish his Ara-C tomorrow.

We are in debt to all of you for your prayers, cards, calls, and every other sort of support. Primary Children's Hospital provides an exceptionally positive environment with competent, caring doctors and nurses, and support staff. They disinfect this whole room every day, so we feel safe despite all the toxic chemicals going into and out of this baby. The nurses respond immediately when the signal goes off on his IV. The doctors answer questions and explain things thoroughly and kindly.

Love to All! Lizzie, Stew, and Joan