Clay came home from National Rehabilitation Hospital in March. He was meeting all their goals for mobility and physical therapy, but still not thriving. They (and we) feared that if he stayed there any longer he would never want to leave. Clay has learned to feel very safe in hospital. For the first few weeks at home Clay continued to be very fragile and complained constantly about physical ailments. He has been unable to return to school or do much of anything. He has lost close to 20 pounds. Collectively, we decided to pull him off of the MEK inhibitor clinical trial drug that he has been on for 5 years. While it is controlling his tumors, it is the only unknown element that seems to be causing other problems with his CNS. No child has been on this drug for as long as Clay, and the doctors fear keeping him on it could cause irreparable damage.
One of the Imagine An Answer’s Board Members, Dr. Lloyd Everson, connected us to Dr. Clifton at Kalypso Wellness, in San Antonio Texas. Dr. Clifton’s group is having great success treating people with ketamine infusion therapy. People who suffer from depression, PTSD, chronic pain, arthritis, and a host of other issues seem to benefit the most from this type of treatment. Mary and Clay flew out to Texas last week. Clay was shaking and very weak. After the first infusion, he slept 18 hours. By noon of the day he awoke, his shaking had stopped and he said, “I feel great!” We had the best day we’ve had in months, going to a museum and eating out for lunch. After the second infusion, Clay is re-engaging with the world and showing a glimpse of his old self. This week he will start home-hospital schooling a few hours a day. He is doing physical therapy as well. We hope and pray that positive changes continue and he has time to regain some strength before he needs to begin treatment again for his tumors.
Many thanks to all for the stream of jokes and good wishes sent our way. The 5th grade class at our church sent a bundle of letters this week, and we were able to attend Easter Mass. There is not a day that goes by that we don’t need a laugh or a sign of spring.