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 26 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 cost well over $2 million.
Danny is about halfway through the Pain Rehabilitation Program at the Mayo Clinic in Minnesota, & let's just saythey have their reputation for a reason.
The group (about 15 kids on a rotating basis) is “boot-camp” style, with 9-hour days counting lunch, plus 4 week nights & both weekend days of mandatory social events. The days are made up of hour-long sessions of PT, OT, recreation, biofeedback, relaxation, life skills, stress management, lectures, etc, (not all every day) and the social events give them a chance to practice their skills & techniques in a fun way. There is a huge parent component as well (@15-20 hours a week plus the social events) to learn our own set of skills to understand & support their new way of life & to ensure a smooth transition home.
In addition to learning all these skills, the kids also must do daily chores, homework, exercise, etc, which must continue once home. The more fun things we’ve done through our social activities are laser tag, go-karting, rock climbing, attending street fairs, movies, dinners, brunch and picnics with wiffle ball (to name just a few). It’s amazing to see these changes happening so fast when many of these kids came in using wheelchairs etc. to move!
The most important concept they teach is how to eliminate pain behaviors and banish the concept of pain (talking about it only encourages their focus on it). So, the Danny who is coming home is not sick - please, do not ask him how he's feeling. The answer is he's feeling great!! You're going to just be so amazed by his progress...!!!