AJ playing in the yard in early November
AJ has been holding up incredibly well during the Delayed Intensification phase. The second part of the DI phase started this past week. He was at Children’s every day for some sort of chemo or procedure, including a spinal tap with methotrexate, cytoxan and cytarabine via IV and thioguanine by mouth. Definitely a challenging time, with a lot of drugs. In addition, AJ got his second seasonal and his first H1N1 flu shot last week. But he continues to be strong and in good spirits. He really is acting quite normal and just wants to be a kid. As a result of this intense part of the treatment, his blood counts have come down. His ANC has been below 1000 the past couple weeks, but has not dropped below 800. This is an expected side effect, and we do expect it will drop below this point likely in the coming week. Because his immune system is susceptible, we are trying to keep him close to home, but we also don’t want him to go stir crazy so we are taking him on occasional outings
About two weeks ago AJ’s hair (which up to this point had just thinned) started falling out at a rapid pace so we cut it really short. We think it was the doxorubicin that finally triggered it. He’s not completely bald, but he’s close. He looks like he did when he was a baby with short fuzz for hair and with the few extra pounds he gained during his last round of steroids. The funny thing is that he hardly notices it, and Camille has yet to say a word about it. It’s just not a big deal to them.
The rest of the side effects have not been too bad. Not to say it’s a walk in the park. Over the last few weeks, AJ has definitely had some nausea and some episodes of throwing-up, but he has been taking anti-nausea meds to help with this.
Since our last post, we celebrated AJ’s 5th birthday (November 7). We did not have a party with kids, but did have Brian’s parents in town and a couple of friends over for cake and ice cream. Birthdays can be a time of reflection, and it’s hard to believe what our little boy has gone through since his last birthday. We only hope that several birthdays down the road (perhaps his 9th or 10th?) that we are at a point where we can use the word “cured” when talking about his battle with leukemia.
For Thanksgiving we have had Sarah’s extended family in town, so AJ and Camille have been thrilled to have Grandma & Grandpa as well as Aunt Laura, Uncle Peter and baby Jackson here to entertain them. While it’s been a difficult year, we have a lot to be thankful for.
Coming up we have another full week of appointments. But, after that things start to slow down. By mid-December AJ should be entering the “Maintenance” phase which will consist of lower/less frequent doses of drugs. This will last just under 3 years. We are hoping by January/February timeframe he will be able to re-enter preschool (he’ll be moving into the pre-K class).
Again, keep the positive thoughts and prayers coming our way as we finish up the last part of the DI phase. We appreciate it.
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