AJ and Camille at pumpkin patch
We haven’t been updating the blog very frequently because we haven’t had a lot of news to report. No news is good news, as everything continues to go smoothly for AJ. Our appointments at Children’s last week went well. AJ’s ANC had dipped the week prior to around 800, but rebounded to 2300 last week, which surprised us because the doctors keep increasing the dosage of methotrexate (this drug can bring the blood counts down and affect the liver). He seems to be building a tolerance to it, because despite the increase, all of his counts were up, and his liver and kidney function looked excellent. As a result, he was able to receive another higher dosage of methotrexate, for the fourth consecutive time this phase. This is good and bad – good because his body is tolerating it well and the higher dosage is killing off any remnant of leukemia that might exist, preventing recurrence, but bad because as parents we do not enjoy seeing our son injected with increasing amounts of this nasty yellow drug. AJ also received another dose of vincristine as well as a spinal tap to inject chemo into his spinal column (he went under a general in the “sleepy room” for this).
AJ is continuing to handle the stress of the visits and pokes well, and is actually getting more and more comfortable. This is a big relief for us, and we’re really proud and impressed with how well he is dealing with the entire situation. He likes to “roar like a dinosaur” when he gets poked during his port access. Thankfully, this phase of treatment (Interim Maintenance) has been pretty low key and we haven’t had to deal with many side effects. We are scheduled to begin phase IV, Delayed Intensification, on October 26. Delayed Intensification is supposed to be a more intense phase with some new drugs that will be introduced. We are hoping that AJ will be able to get the first round of flu shots before that phase begins, otherwise we may have to wait (Delayed Intensification includes more steroids, and the flu vaccine typically will not be given at the same time as steroids are being used due to risks of complications).
In the meantime, we have been able to get out and enjoy our free time. We’ve had recent outings to the zoo and to the aquarium (where our friend Andy, who is a biologist there, gave us a “behind the scenes” tour). We have had friends over to play, and a couple weeks ago we were able to meet up at a park with some friends whose son Luke battled ALL and is now 1 year post-treatment (and doing really well!). It was great for AJ to meet someone else who has gone through what he is going through. Luke and AJ didn’t really talk much about their “broken blood” but did show off their port operation scars. Last weekend, we visited a local pumpkin patch where the kids picked out pumpkins, took a hay ride and rode ponies. Aunt Laura (Sarah’s sister) and baby Jackson came with us. Laura has been staying with us for the last 10 days helping out with the kids until our nanny Sarah G. is able to start. Before that, Brian’s mom Helen was in town helping. We don’t know what we’d do without their help – Helen and Laura have been saints!
We’ll keep everyone posted as we head into the next phase. Keep thinking positive for us – we appreciate the thoughts and prayers.
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