Thursday's home blood draw was delivered to clinic the same day and they called me later to let me know that Max's platelets had already dropped to 24. He just had reds and platelets transfused Monday so I was a little surprised. He's been going seven days between platelet transfusions for a few weeks now and I had planned on bringing him in on Sunday for his weekly refill.
Well... Max had to go to clinic
Friday for the refill. I wasn't sure what to do in preparation for our
DLand trip, but the nurse (Beth, who is always very helpful) told me to plan on bringing him back Sunday anyway for a top-off on those platelets. As she put it, giving him more platelets on Sunday may actually put his count above 100. How bad would that be?
Obviously, Max has a platelet producing problem that is not getting any better since we stopped giving him toxic (chemo) treatments. We had hoped that by stopping toxic treatments for a while his marrow would start producing, but we are not seeing the hoped for effects of that.
Instead we are seeing rising
VMA/
HVA. If you haven't looked at the chart Andy has linked up, Max's 7/28
VMA=425 and the
HVA=105.8. This was the second one in a row to go up up up and in all
likelihood this means disease progression. Insert
expletive of your choice here: ______!
We had a conference call with Docs Roberts and
Sholler Friday and tossed around a few ideas with them. Funny thing is we, Andy & I, need to make the decision on what to do, what to give. I feel like we're holding the double edged sword. Max's marrow is weak. It's not producing platelets and even his red production is questionable. So while we wait to see if he can recover the damn cancer is having a field day in there. Then when we decide we have to introduce some toxic treatments in order to fend off the cancer, we're knocking his bone marrow for a loop, too.
During the conference call I asked the docs exactly what it means to be platelet dependent (this question has been on my mind for a while now). Max is pretty much there already. Platelet dependent (in my words) is when your marrow can no longer produce its own platelets. Transfusions are needed every 3-4 days to help ensure uncontrollable bleeding doesn't occur. There are instances when the body can finally make a comeback from this on its own. Many times a
stem cell or bone marrow transplant is
necessary.
Maybe this sword has more than two edges... Whatever the case, we are not ready to throw in the towel.