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Danny woke up on June 27th, 2012 with a strong pain in his lower right abdomen … strong enough that he was taken straight to the ER. At first, we thought it was appendicitis (not the case). Blood tests showed elevated white cell counts and low platelets; subsequent tests had his primary physician talking to pediatric oncologists in Columbia Presbyterian in NYC. Less than 12 hours after he said his side hurt, we were checking into the Columbia Children's hospital.
The diagnosis is Acute Lymphoblastic Leukemia, and - because of his age and various other factors - the treatement has been an intense combination of chemotheraphy and direct-brain radiation. Over the past 13 months, Danny has been hospitalized 7 times, almost died 4 times, experienced blood clots in his heart and lungs, and undergone four major surgeries to (successfully) save his leg after an infection. The entire program extends for 26 months, after which he has approximately a 30% chance of relapse.
To start with: We wish you the most joyous of holidays and a very happy new year!
We've got just a little under 9 months to go until Danny wraps up chemo for good! Just like our last update, he’s still responding to treatment, and still getting weekly doses of methotrexate and vincristine. They've been holding the steroids since September, though, to give his knees a chance to recover from the chemo-induced Osteonecrosis. Unfortunately, they haven’t done much recovery, and he hasn’t walked normally since this summer. Pain is fairly constant, and made all the worse by the peripheral neuropathy.
Side note: he has a genetic mutation which makes him process methotrexate much more slowly than a normal kid. On the bright side, this means that each dose is much more effective for treating the cancer … on the dark side, it means that side effects are absolutely brutal (and helped bring on the AVN in the first place). The sequence name of this mutation? MTHFR. That’s right: “motherfucker”. Only my son would have a genetic mutation called “motherfucker”. Geez!
Danny’s mantra being “whatever it takes to get me running again”, however, means we’re getting aggressive about the leg treatment. We have a tentative date of January 16th where he’ll get “core decompression” surgery. This procedure consists of drilling into the bone to form “alternative vascular pathways” and encourage the growth of new, healthy bone. They’ll be drilling 20+ sites on the tibial and femoral sides of both knees (inside and outside), as well as the femoral heads in the hips. It’s uncertain if this will make him feel better in the short run, but it will help avoid any nasty joint collapses and whatnot (or so it’s believed) and encourage a full recovery when chemo is done. We expect him to be confined to a wheelchair for 4-6 weeks while he rehabs from the surgery. His plan is to still go to school whenever he can.
Thank you all for your constant prayers and support. It has made – and will continue to – make a huge difference.