Yes, it’s been forever since we updated this blog. I’m not sure if anyone even looks at it anymore, but for the sake of closure we wanted to give an update on AJ. He is doing fantastic. He completed treatment in August 2012, almost 16 months ago now. Following treatment (literally two days later) he had his port removed, just in time for 2nd grade. A couple weeks later, we did his Make-a-Wish trip. AJ chose to meet the Kratt brothers. They are two brothers that have had several wildlife shows. Their current show, Wild Kratts, is on PBS Kids and is part animated-series, part wildlife adventure. Anyway, they are based in Ontario, Canada of all places. So we got to stay in Ottawa, the lovely capital, and spend time exploring with the Kratt brothers. AJ loved it, as did Camille. The Make-a-Wish foundation is such a good cause, and we plan to ‘pay it forward’ so that another family dealing with a life threatening disease can have such a great experience.
Since AJ’s been off treatment (OT), he’s grown like a weed. He feels great. It was actually an adjustment to not have to take the meds every day, since he literally stopped cold turkey (no tapering off). AJ had a series of tests once he was OT, including an echocardiogram, bone scan, kidney/liver function and other various hormone and blood tests, and everything is on track.
AJ is active in baseball, soccer and tennis and is doing really well in school. We haven’t seen any sign of learning disabilities, which can be a long term side effect. On the contrary, he is in 3rd grade now and excels in all subjects- not to mention he is fluent in Spanish as he attends an immersion school. The only long term effects of the treatment we’ve seen are 1) sun sensitivity, and 2) below average bone density. The sun sensitivity should hopefully go away over the next couple years. Basically, all the drugs he took has caused him to have what’s called phototoxic dermatitis, essentially an allergy to the sun. During the summer months or anytime where he will have significant sun exposure (vacations) he has to take an antihistamine twice a day, and he has to wear 50+ sunblock, the physical kind with zinc oxide. So, there will be no sun tanning for him anytime soon! As for the bone density, he had a dexa scan a few months ago that showed he had some weak areas in his bones. We are told this is expected for someone who has gone through this type of treatment. AJ takes super high doses of calcium and is supposed to maintain an active lifestyle in order to help build up his bone density over time. We’ll have another scan next year to track progress.
The bottom line is that we’ve been very fortunate with AJ’s health and prognosis. For the first year OT, he had monthly checkups, and he now has moved to quarterly checkups. The checkups basically consist of a physical exam, questions and a blood test. Leukemia cells can easily be spotted in the blood test, so that’s really what they are looking for. Once he gets to 2 years OT, he will move into a ‘long term survivor’ program which will track him over time. I believe at 5 years OT he will be considered cured.
We truly hope that we can look back on this experience as a bump in the road. We pray for AJ’s continued health and that the disease does not come back. Please continue to keep us in your thoughts and prayers as well.