My son Abe was diagnosed with a very rare bone cancer in his leg in December of his senior year of high school (Read about Abe’s experience in the article titled, “Patience and Persistence.”) The normal excitement and milestones of high school graduation, college decisions, and playing his final year of varsity lacrosse in high school were replaced with multiple complicated major surgeries, trips to New York City for treatment every two weeks, multiple hospitalizations for infections, learning to walk with a walker, then crutches while the two-year process of his leg healing occurred. He was bed bound for months and maintaining his spirit was difficult.
As if his cancer wasn’t enough, I was diagnosed with breast cancer and had to go through surgery, chemo, and radiation about a year and a half into his process!
The most common childhood cancer is leukemia, a type of blood cancer. Cancer can also occur in organs and tissues such as the lymph nodes (lymphoma), nervous system (brain tumors), muscles and bone (sarcomas and other solid tumors), and other organs.
Abe didn’t have a classic childhood cancer (his cancer has only been diagnosed in about 600 people worldwide in the history of record keeping) but he did have cancer in childhood, and so we were introduced to, among many other things, Childhood Cancer Awareness Month.
September is Childhood Cancer Awareness Month. Did you know that childhood cancer only gets 4% of all National Institutes of Health cancer research funding? The rest is funded by nonprofits. There are very few options for children who fail standard cancer therapy. Research is urgently needed! Research happening today is unlikely to help a child with cancer right now. Don’t wait to give until your child needs a cure because that cure is unlikely to come in time.
If you want to donate to a childhood cancer cause, I recommend:
Alex’s Lemonade Stand
This four-star charity (according to Charity Navigator) focuses on research surrounding treatment and cures for childhood cancer.
Limb Salvage Fund at Memorial Sloan Kettering
Dr. Daniel Prince, who saved Abe’s leg (and his life) works on ways to salvage limbs in people with cancer of those limbs. In this video where Dr. Prince explains limb salvage, Abe is sitting on the couch with another young child.
Local to us and an amazing camp for kids with cancer.
Camp Ta-Kum-Ta holds a special place in my heart. It is a tough sell to get a 17-year-old to go to “Cancer Camp.” By the time camp rolled around that summer, Abe was 18. A one-and-done camper at a camp for children with cancer. Camp was supposed to start for him ten days after his second major surgery, when he was totally disabled, in pain, on multiple medications, couldn’t get his leg wet, and was generally super grumpy.
I had heard about the magic of Ta-Kum-Ta for years and told Abe I thought he should go. He was totally against it. “What do they do there that makes it good,” He asked. “I have no idea, but they do it well,” I responded.
He refused to go.
I arranged a tour of the camp with the ever-helpful staff. We went, we saw the fun activities they had, and he refused again, stating that it looked like it would be so much fun if he could do activities, but he couldn’t, so it would suck even more. The staff assured me that he would have a good time. I told him not going was not an option. I told him that if he went, and was miserable after 24 hours, I would take him home, but he had to try it (as you can tell, I’m kind of a mean mama.)
I checked in after 24 hours and he didn’t want to leave. I brought him home to bathe after 48 hours (we had a whole system at home that would have been difficult to recreate at camp) and offered to let him spend the night at home. He wanted to go right back to camp. I picked him up at the end of the week and he said,
If I had to get cancer, I wish I could have gotten it sooner so I would have more years at camp.
Abe has volunteered at camp every year since being a camper. The experience has been life-changing for him. Sometimes, mother knows best, even if she doesn’t know why.
Make a Wish Foundation
Granting wishes for kids with life-threatening diseases.
My son and our whole family needed something wonderful to focus on at many points over these two years. Make a Wish provided the much-needed distraction.
If you have ever had a teenager or been around one, you might be able to imagine their process of choosing a wish. A wonderful trip? Yes, for sure! With your parents and siblings? NO way! He wasn’t into celebrities, wasn’t going to be living at home much longer, and wasn’t interested in Disney.
Picking a wish was hard. Not to mention that he was in terrible pain and drugged up for a year. It took a long time to decide what wish he would ask for, but even that process was a good mental distraction for him.
Abe has always been a musician. He can play any string instrument immediately. He began studying violin when he was four and played in the Vermont Youth Orchestra Association and various chamber groups through high school. But he put down his violin the day he was diagnosed with cancer and has not picked it up since. During his convalescence, he took comfort in his guitar. He played a crappy, old, cheap guitar for years for relaxation. He always said that if he ever got rich, he would buy a very special instrument from Martin Guitar. He loved the beauty of the inlay, and the pure tone of this particular guitar and decided to ask for this special guitar as his wish.
Abe’s wish came true on a beautiful weekend day in September, about a month into my chemo. I was bald, and he was walking with a cane and walking boot. On that special day, his girlfriend lured him to a local music store where he was surprised by many of his friends and family and where his dream guitar was delivered to him by the amazing Grace Potter. She was so personable and generous with her time. She sang Wagon Wheel while Abe tried out his new guitar. I can (and do) watch the video of this event over and over. It brings a smile to my face and tears to my eyes. Every time. It was a very heartwarming day for our family in a sea of really, really hard times over several years.
Abe’s guitar went to college with him, came home on vacations, and has always been treated like a baby. Every time he picks it up, it delights his senses. It is a fulfilled wish that will inspire him, and bring him joy and solace for a lifetime, and it will always bring him back to that time he played lead guitar for Grace Potter! As a mother, seeing your child, who has suffered so much, happy is priceless. Not only do we have the memory of the day he got his wish, but we also have every day with his guitar. Every song. Every note.
Abe is now a grown man, who works as a financial advisor with PFA Professional Financial Associates serving the community that helped raise him and supported him through his cancer. He gives back to cancer causes and helps support others going through treatment via his work with Camp-Ta-Kum-Ta, fundraising for limb salvage, and being a source of emotional support and information for others going through the same treatment he had.
I hope my stories about having a child with cancer push you to think about donating to a childhood cancer cause if you are able.
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