Time for bed.

It is 1:20 am and yet again, Briana and I have wasted (?) our evening worrying and researching about our daughter's health. We comb the same websites time and time again searching for the answer to the only question that really matters - Is she going to make it? It is frustrating having read the same pages over and over again, unable to find the answer to that question. Sure they all tell us that 90.8% of ALL kids make it, but then there is always that clause, High Risk ALL has a worse prognosis, but no one will say how much worse, not that a percentage would answer that either. Monday we tried to find out if other kids normally tank this far after treatment. Yesterday the search was "pinkeye in the immunocompromised." Today we added a new word to our search. "Relapse." It is an ugly word and it did bring up different pages, that we probably shouldn't read. At this point there is really no evidence that Elena still has Leukemia cells in her body, but when I asked the nurse today what we would learn from the non-routine bone marrow biopsy that Elena is scheduled for on Monday, she very hesitantly answered, that it was standard procedure to check for relapse if the counts remained low four weeks off of chemo. Those words are like poison. I don't want the nurse/doctors not to say them. I want to know what is going on, and why we do the things we do, but unfortunately, even though it is unlikely that the cancer is back, tonight we contemplated the possibility, and it hurts. I am sorry, but I want you with me tonight. Many of you probably think that we cry wolf on things. It seems we are always blowing things out of proportion, jumping to conclusions that the evidence just doesn't support. Lily has Celiac, Cystic Fibrosis, ate a battery, Elena fill in the blank. We can't seem to entirely separate our fears from reality. So tonight we mourn our daughter's relapse that hopefully never will happen. We try and grapple with the new statistics - 10-60% prognosis for relapsing ALL. Worse for kids with isolated marrow relapse (would be Elena if the bone marrow came back bad.) Also worse for kids that relapse in less then 3 years, worst being relapse in the first 6 months, and during chemotherapy. Someone help us! We are addicted masochistic internet health researchers! There we said it for all to know. Don't make fun of us.

Eric