I would be lying if I said that both Jeff and I are not scared and grief-stricken. There are a lot of serious potential problems. But what are the options? Our oncologist started the conversation with, “It is what it is.” None of us have any control over this process. We just have to be thankful that Nico was identified as high-risk and will thus be treated appropriately even if the treatment totally sucks.
Just three years ago, the 0.04% blast (cancer) cells found in Nico’s bone marrow on day #29 of chemo would have been considered inconsequential and his marrow would have been deemed “clean” (thereby putting him in the standard risk category). The cutoff then was 0.1%. The technology that even allows them to detect such an incredibly low percentage is relatively new. When this technology became available, cancer researchers went back to bone marrow samples from children with leukemia in the 80s and 90s and found that children that later relapsed actually had these miniscule levels of blasts cells in their marrow, which was previously deemed “clean.” Based on this data, the new standard of 0.01 was set. So I guess we are lucky that Nico was diagnosed in a time when we have this information. Maybe we will see the survival rate of high-risk kids improve because of this? I hope so.
I stated in an earlier post, relapse is a big issue in ALL. Ninety-five percent of these kids are in remission by day #29 (and technically Nico is too), but almost all of these kids would end up with cancer again if chemotherapy were not implemented long term (over 3 years for boys). One of the two big areas that are especially troublesome is the cerebrospinal fluid (CSF). Because of the protective mechanism in the central nervous system (the blood brain barrier), conventional chemotherapy does not pass into this area. So cancer cells hide there and then cause relapse. So oncologists aggressively treat the CSF and Nico will get at least 22 more lumbar punctures (spinal taps) and at each they will inject chemotherapy directly into the CSF. But there are some questions and on-going research in this area. St. Jude’s found in one study that by injecting three different types of chemo (as opposed to the usual one) into the spinal fluid at each and every lumbar puncture, they could eliminate relapse in the brain and spine. But are there serious long-term complications? Does it affect intelligence, ability to concentrate or reason? Data collected over the last 9 years suggests that it does not affect cognitive ability, but these findings are not conclusive. So the Cancer Oncology Group (our hospital is a member) has asked us to be in a trial that is specifically studying this. If we agree, Nico will have a 50/50 chance of either receiving the one drug (methotrexate) or the three drugs (methotrexate, hydrocortisone and cytarabine). If we decline the study, Nico will just get methotrexate alone.
We are struggling with this decision. Nico is so smart and witty and we are terrified of injecting all these drugs into his spinal fluid for three years. Likewise, we are terrified of a relapse, especially in that area, because the treatment for relapse is even worse than what we are already doing.
No one should have to make these decisions. No one should have to watch their child go through this. But “it is what it is.” We are here, life is not an easy journey, and all we can do is move forward.