My name is Barbara Friedman. I'm privileged to share our story with you. Thank you for this opportunity.
We continue to celebrate the wonderful health of my son, Kevin. But there was a very stormy side.
In November of 1993, in his Kindergarten year, Kevin became the victim of Leukemia. It became urgent to arrest a very aggressive Chronic Myelogenous Leukemia (CML - rare for children). Since that form did not respond well to chemotherapy, we needed to search for a bone marrow donor immediately. None of us family members matched. The National Donor Marrow Program was solicited and within a couple weeks a 100% donor match was discovered. Throughout December, Kevin continued his life as normally as possible between blood and platelet transfusions and many, many medical tests. Would this be his first and last school music program? Would he have another Christmas? Would the New Year be a happy one? We were so scared!
Kevin needed to 'buy in' to the BMT option and we needed to explain it to him in a way he would make the 'right' decision. We explained that through no fault of his own, nor through anything he did, his blood had become sick. It was no longer able to fight off germs and sicknesses, nor able to properly create the life-giving cells. He only had two options. If we did nothing, he would not get better, not be able to go back to school, not be able to see or play with his friends, and always feel very sick, tired and not able to do anything. OR he could go into the hospital, and under doctor care he would be given a lot of nasty medicines, he would get very, very sick right away, he would be given a new system of healthy blood and over time heal and get better -- then he could go back to being with his friends in school! He thought about it for what seemed a very long few minutes. Then he closed his eyes, took a deep breath and said that he thought he'd like to get better, and go into the hospital with the doctors. We made sure that he understood that once we told the doctors, there was not turning back, and that he would have to do whatever was asked of him in order for it to work and for him to get better. He promised he would do the right things. We made our call and the ball was rolling!
Kevin underwent surgery to put in his central venous line in mid January. With that the family was thrown into the midst of learning to become healthcare providers - having to flush the central line twice a day, actually injecting things into our son, hoping not to add any air bubbles which would kill him. For three weeks we needed to cleanse the area, keep it covered and sterile at all times and keep it flushed. Life was NOT normal any longer. He was not allowed back to Kindergarten after the winter break. We hoped to keep him alive through transfusions long enough to make it to transplant day, scheduled for 2/11/94.
He was admitted to the hospital on 2/2/94. Once in the hospital we tried to make it as pleasant for Kevin as possible. We decorated his room, he wore funny masks through the hallways to and from the radiation sessions, he ate all his favorite foods while he was able to, and got to ride in really fun wheelchairs! At least until the side affects kicked in from the chemotherapy and radiation. I remember vividly how difficult it was for me to watch my beautiful little 5-1/2 year old boy just lay down in this big cold, scary room, with no one in there to hold his hand, while the radiation machine zapped his little body! He laid perfectly still as he was asked to, we could see him on the video monitor. He looked around the room with his dashing little eyes - so trusting of all of us grown-ups to make him all better. I was so afraid that it wouldn't be that way. I had to keep encouraging him about getting better, at the same time a part of me was already grieving his little life, and was saying goodbye. I had to be prepared for both options!
There were times when I'd be there helping him with is mouth care routine, when his mouth was so raw from mouth sores and he'd cry and ask me if he had to do it! I had to be strong and remind him that if he didn't keep his mouth clean the germs would build up and his body couldn't fight them off. And I had to remind him of his promise made before it all began that he would do whatever he was asked to do. He cried, he closed his eyes, he took a deep breath, and said, "Let's do it!" and my sweet little trooper did that next task that was asked of him!
Over time the new bone marrow began to grow and build a new immune system - fighting and healing all the affects of the chemo and radiation. He grew stronger and stronger, with few set backs. He actually walked out of the hospital in what was then a record time of 28 days! He did stay another month at the Ronald McDonald House across the street for daily follow-up care. He made some wonderful friends there to help him get through this ordeal. Over time the check-ups became every other day, then every several days and then weekly. Once they were weekly he could live at home and just travel to the hospital for check-ups! Just in time and two days before his big sister, Michelle's, 7th Birthday, Kevin came home on March 26th, 1994.
Over time he grew stronger and stronger. He returned to first grade by October and has hardly missed a day since! He lives live 110% each and every day. He's a delight.
These were all very anxious times for our family. There were so many wonderful people that came to our support during that very difficult time. It was because of that experience that a friend of mine who was involved at the time with Team iN Training branch of the Leukemia and Lymphoma Society training for the Chicago Marathon, asked if she could run in honor of my son (Kevin), and have him as her 'patient hero'. Ever since Fall of '95, we have been part of the patient hero side of the program....lending Kevin's name as a 'patient hero' for three training seasons each year, in encouragement of many dozens of people who joined the team each season. TNT helps train, coach, and mentor people dedicated to running, walking or run/walking a Marathon or half Marathon. There are also Cycle and Triathlon programs, but I'm involved in the Marathon program. In turn, participants raise funds for the Leukemia & Lymphoma Society, which are utilized for direct patient care or for breakthrough research! We saw many folks accomplish their dreams of becoming first-time marathoners!
Even though I was never an ‘athlete’, after seeing so many folks who weren’t in shape enough to walk around the block, actually train and do full marathons, in 1999, I felt it was 'my turn' to get involved also as a participant, get in marathon shape as a power walker, and raise monies for the cause...the rest is history! Chicago Marathon 1999, Kevin crossed the finish line with me, and is even in my finisher photo. Since then I've completed 14 more Full Marathons, 15 Half Marathons, and even 2 Triathlons, with Team In Training, having raised nearly $80,000 collectively throughout the past seasons. I am currently fundraising again and training with TNT for the Spring and Summer 2012 Seasons for the North Shore Half Marathon in June. TNT is a wonderful program with only 25% of the money raised going to training/coaching/
I'm training with their coaching staff, the other participants from all over the Chicago area, making friends, getting/staying in shape, and raising monies for this terrific cause! Over the years I'm sure all those walking/run-walking/running in Kevin's name have raised a several hundred thousands of dollars or so, and with the monies I have raised I feel we're making a BIG difference in peoples lives. I've become very involved with the program, not only training for and participating in so many marathons, but also volunteering in mentoring new participants, and now as a "Patient Hero Captain', supporting all the other Patient Hero Families and encouraging them to connect with their assigned participants, and to help them feel part of the TEAM.
Kevin continues to remain healthy! I'm happy to report that Kevin celebrates his 18th anniversary of his bone marrow transplant on 2/11/12. We have had many proud moments watching him grow and experience life thru the grade school years, middle school, the very musical and performing hears in high school, wonderful years in college majoring in Food Science at Iowa State (GO CYCLONES), even becoming one of the marching band drum majors! And now he has moved full force into his next phase of life: REAL JOB: He’s the 2nd shift Quality Technician at Tootsie Roll! He started there on his 23rd Birthday, on August 29, 2011! As tumultuous as the brand new ‘real world’ years can be, we look forward to experiencing them with Kevin. I can't help but think of how close we came, so long ago, to not being able to enjoy any of these life moments of Kevin's.
It's seemingly a 'story book' ending, but as life continues for Kevin, we're still watchful of the residual effects that may appear throughout his life, for having undergone such high doses of radiation and chemotherapy at such a young age. He needed to be 'artificially supported' to begin/complete puberty, he needed to repeat ALL of his childhood immunizations, and he's developing cataracts, he’s already done growing at 5’1” tall, but he’s a HUGE presence in his world already. Hopefully these residual affects will remain 'minor' in comparison, and he'll be able to continue his active, healthy, delightful life!
Thank you so much for the opportunity to share both mine and Kevin's stories with you.
No comments:
Post a Comment