So far there has been a lot of things for which to be thankful. Nico’s leukemia is the most common childhood cancer and thus a lot of research has been done studying treatment options, long-term effects of treatment, survivability, etc. Because of this, Nico's treatment will be tailored specifically to him based on the results of his bone marrow biopsies and blood tests. In addition, Nico’s cerebrospinal fluid did not have any detectable leukemia cells, so this eliminates the needs for two additional chemo drugs that would otherwise be injected into his cerebrospinal fluid at specific intervals. He will still get one type of chemo (he had it today), but there are much fewer long-term issues with the single chemo as opposed to three. Most importantly, he has favorable cytogenetics and that means his type of leukemia is very likely to respond to the chemo typically used in treatment.
The treatment still completely sucks and it is still long (6-9 months of intense and 2.5 more years of maintenance). Nico is in pain, no longer plays, gets overwhelmed very easily and cries a lot. But the other parents in our boat tell us that this will pass when he gets off the steroids. He is essentially having roid rage on top of losing control on top of having constant pain. But we are trying to stay positive, think positive and focus on the good news (I say after listing the negatives). Another positive was that Nico’s oncologist reacted appropriately when we told him about the lack of communication. I won’t bore you with the details, but we now have his doctor’s pager number and email address and can contact him directly if needed. He also made a copy of Nico’s chart for me, including all his current orders, labs and medications so that I can double-check the nurses. Hey, we are ultimately responsible for our son’s care, and I am not taking any unnecessary risks. It was all handled professionally, so I guess we won’t be driving out of state in the next few weeks.
Again thank you for all the support. We are deeply touched by the outpouring of love and concern. Thank you.