Alex's Lemonade Stand Foundation

It’s so strange to think back in time when our lives were so very different and our son Matt wasn’t diagnosed with ALL. Matt was always big for his age, his Dad is 6 ft. 4, always off the doctor’s charts for height and weight and very healthy. He was an avid bowler, he made many friends at the local bowling alley. Our biggest hurdle was an occasional flu or cold and yes he did break his leg using a skateboard. Who would have thought in our wildest dreams what challenges lay ahead of us soon after his incredible Bar Mitzvah and thirteenth birthday.

Matt hadn’t been feeling well, sleeping a lot, pale and not very active. He also had really bad headaches. I took him to a special headache clinic figuring he had migraines. Unfortunately, they never took blood work and assumed he just didn’t want to go to school. I just didn’t feel in my gut that this was correct. I always follow my instincts and eventually we had to take Matt to the ER because he was so sick. They took his blood and found out his hemoglobin was very low. They had to do blood transfusions, which we had no clue about. We wanted to donate our blood to him but were advised that wouldn’t be a good thing, what did we know? They couldn’t figure out what was wrong, even our pediatrician thought it was probably some kind of virus. My gut told me it was more than that, so we found our way to an oncologist. Even she didn’t think there was anything too wrong. He’s so big and healthy and his blood counts look great! She told me go on vacation and come back in a few weeks. I told her do a spinal tap and tell me it’s all right to go on vacation. I knew nothing medically but a little voice in my head kept saying do not leave. Within three hours, we had our diagnosis- ALL. Matt’s grandfather had passed away from CML six years before that. We were in a panic, to say the least but I knew we had to move along quickly. Matt suffered so many complications from the aggressive protocol that it made the chemotherapy treatments very difficult. He suffered a lung clot, pancreatitis nineteen times, avascular necrosis ( AVN ), fevers, hepatitis, shingles, mucositis and diabetes to name a few.  From my understanding, some patients just sail right through, all we did was sail right into the hospital every other month. It became apparent that Matt’s body didn’t tolerate chemotherapy well but we had no choice but to push on to save him from the ALL and keep him in remission. This went on from 2003-2006, a truly grueling time in our lives. It’s very isolating to say the least and there aren’t a lot of visitors, at least we didn’t have many. It’s a scary place for people to come to even though it felt like home to us.

Matt's sister Rachel had just graduated high school at the time of his diagnosis. She took on the role every caring and loving sister would. She truly didn't want to attend college in the fall but I told her it was something she had to do. She wanted to take off that year and stay home to help us. It was a noble gesture, to say the least but I felt she had to move on with her education. She had a very rough first two years because our family was so involved with Matt's issues. We couldn't support her in the ways we wanted to, but we did our best. Her college was an hour and a half from the hospital, so just about every time Matt was admitted, she came to visit. When he was in intensive care for his lung clot, she slept on the floor for 4 nights and wouldn't leave. She also isolated herself much of the time due to the difficulty of our lives. As parents, we were so torn but did the best we could. Amazingly, as Matt did better, so did she and by the time she graduated it was with honors.

We made the best of things and laughed our way through but by the time 2006 rolled around, my pom poms were shredding. I felt the entire world was at a party and we weren’t invited but I kept trudging along dragging Matt with me. Since Matt stopped chemotherapy in 2006, he has been able to start his life. He missed most of his teenage years and has started to see the world differently. Not as a “sick” child but as a young man waiting to tackle just about anything. He graduated high school in 2008, which was a huge accomplishment considering how much school he missed. He had a wonderful tutor who advocated for him all through his high school years. Right after graduation, he had a Whipple Procedure, which re-routed his digestive system and removed part of his pancreas which had given him so much trouble. For the first time in many years, so far, the pancreatitis has ceased happening.  With these interruptions finally under control he could move on with his life. Matt got his driver’s license and employed part time at a local movie theatre. In 2004, he had a hip coring and grafting to help the AVN and so far it’s still doing well. He has AVN in his ankles and suffers from a lot of pain but is managing. He has started to bowl once again, something he really enjoys.

It truly is a miracle that Matt is here. We are thankful for every day and we do many Alex’s Lemonade Stands ourselves. We know first hand that pediatric cancer research is key why Matt is here today. Our hopes are for this research to lead to cure, so other children and families don’t have to ever worry about childhood cancers.

Hospitals where Matt received care:
Chapel Hill Hospital- Chapel Hill, NC
Children's Hospital of Philadelphia
Hospital University of Pennsylvania

Written by Cindy Schechter, Matt’s Mother
05/09