September 18, 2009 Friday
Today we had a lengthy consultation with Oliver’s doctor at Texas Children’s going over his program for treatment over the next 3 ½ years. We received quite a bit of information – and at times suffered from information overload. It seems easier to take this treatment day by day then to focus on the long term plans. But we realize the big picture is important. Generally speaking, we learned there is a 20% chance the cancer will come back – half of those 20% are able to get rid of the cancer a second time, the remaining half are not. Of course this is for standard risk patients, which we believe Oliver to be, but will know for sure based on results of MRD test discussed below. While these statistics are favorable, we struggle with accepting even a slight chance of cancer coming back to harm our child.
As far as the treatment plan, on day 29 (next Friday), Oliver will receive another dose of VCR via I-V, spinal chemo treatment and a bone marrow aspiration. The doctor said Oliver is not technically in remission yet and that remission cannot be determined until the results of day 29 aspiration are in. Even after remission is declared, the chemo and treatment plan must continue or the cancer will undoubtedly return. On day 29, the marrow will also be tested to detect MRD. These results will dictate our next phase of treatment. If MRD is positive, Oliver would be considered higher risk and receive 8 weeks of more intensive consolidation treatment. If it is negative, we are looking at 4 weeks of standard consolidation. Either way, the chemo is still pretty “intense” throughout the first 6 months. Honestly, the entire 3 ½ years seem intense to me, but these are the doctors words. I will post (in a couple of days) the treatment graphs the doctor provided to the website for those who would like more detailed information. Oliver’s platelets have improved significantly to 189; his ANC is also coming up (870). Once his ANC hits 1,000 he will no longer be considered neutropenic (compromised immunity) and he can come out of “isolation” and be able to go to the store, mall, etc. However, his ANC will vacillate tremendously over the next 3 ½ years based on the stage of chemo he is in. We have a new batch of drugs to learn also for the consolidation therapy. Thankfully, Oliver will not have to take the steroids for a while (but they do bare their ugly faces again intermittently throughout treatment.) Larry and I have a lot of information to go through and some important decisions to make with regards to the second part of clinical trials. We are a bit overwhelmed and jaded and are praying for wisdom to make the best decisions for Oliver. Even after our 3 ½ years of treatment, we will still have monthly “check-ups” at the clinic for a very long time. Our life is changing so much in such a short time, we are doing are very best to adapt. We do feel blessed with the progress so far and just take things one day at a time. God is great, faithful and hears our prayers.
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I started this blog as a way to keep everyone updated on Oliver's status and am so thankful for the outpouring from our friends, family and beyond. Thank you all for the support!