Nothing like a little trauma to get the thoughts flowing.
This morning I woke up, well... my eyes opened, and I begrudgingly swung my legs over the side of our bed. I'm pretty sure I didn't sleep for more than a few hours last night, with every turn my mind springs into action and a dozen thoughts go racing through my head all at once. I quiz myself about each phone call, what was said, what I'm unclear about, and instead of grabbing my coffee and plopping myself in front of the world wide web, I pick up the phone.
I called Kate this morning to ask more questions, a lot of repeats, but I had a pen and paper and I was ready to write this down. I'm going to make notes, and stick it on my fridge, and when I'm turning in for the night, I'm taking it with me, and sticking it beside me. You know, for those hours of tossing and turning, its good to have a quick reference. So after leaving a polite, apologetic "sorry, I have to ask you this stuff again" message. I'm able to get the kids (yes Brinley too) off to school, before she calls. The coast is clear, no interruptions.
I have a series of questions, like "could these cells have anything to do with the strep she had over Christmas" "How many cells were there?' "where are they now?" "how was it tested?' "why were her counts so good if we're looking at a relapse?" and of course "what is the protocol?"
So here it goes, at first glace when the oncologist looked at the cells under the microscope they looked abnormal, any abnormal cell is a red flag, it could have been looked at as residue from her body trying to recover from the strep, but pathology did confirm that not only where they abnormal, but they were leukemic cells. There was a total of 13 cells in her spinal fluid, but only 2 were leukemic, however they pulled 3 vials of spinal fluid, and what they looked at was one single drop of fluid from one vial. After pathology has confirmed, the cells then go to cytogenetics, and they look at the cell make up, the protein strands, nucleus etc. Given that they have enough to work with, we might have an answer by the end of next week. If not we wait until Feb 11th, she'll have a CBC (typical blood work) and the following day, she'll have another LP and BMA (bone marrow aspiration).
Treatment for this relapse is 14 months. She will have much of the same chemo that she did during her previous treatment, just 10 times stronger. She will start high doses of ara-c and methotrexate, and with those we'll be admitted into the hospital. When she is home she will have to have a hydration back pack. She will also have to have the PEG shots in her legs, 3 within the first 30 days. Everything she's done before, lower doses, but we've done this. What we haven't done is radiation. Brinley will need radiation if this is an isolated central nervous system (CNS) relapse. If it's not, and if her bone marrow comes back positive, she will have to under go a bone marrow transplant, and then Carter will have to be tested since he would be her best match, her true sibling. I asked him about being tested, and it was a simple, matter of fact conversation.
"will it save her life?"
"it could, she would have a better chance"
"no problem, I'll do it."
Maybe that is a premature conversation to have with him, but I've always been 100% honest with my kids. I hate springing things on them, they deserve to have the knowledge and power about what is going on.
So there it is, it's all laid out, and now I have to compartmentalize the information and my feelings. I've had my questions answered, I understand what I might be up against and I have to sort it out. So if that means repeat blogs, so be it...I'm searching around in the dark trying to come to a place of peace.
Just let this be a fluke.