My Son was Considered a ‘Cancer Survivor’ and Then He Died
By Christina Ip-Toma
I always tried to ignore the numbers. Our youngest son Dylan was diagnosed with osteosarcoma, a rare bone cancer, in 2016 when he was nine years old. He fell on his shoulder during recess and an x-ray revealed a tumor in his left arm. Dealing with cancer involves lots of numbers, most of which I didn’t like.
The numbers I avoided the most were the ones published in research papers discussing terms like EFS (Event Free Survival) or OS (Overall Survival). Like most parents in our position, we spent a lot of time researching the disease to help us understand the treatment protocol, determine the best surgical procedures, and find possible therapies should first-line treatment fail. It was always a challenge to glean the important information while quickly glossing over the depressing numbers.
The overall 5-year survival rate for children ages 0 to 14 with osteosarcoma is 68% and drops to 15–20% with recurrent disease.
When your child is battling cancer and tolerating the most brutal chemotherapy and surgeries, you see him in a new light — a warrior, a mature soul, the little engine that could, but you never ever think of him as a statistic.
You tell yourself those numbers don’t matter. My child will be the outlier.
Then there were the numbers I tried to tally, but could never keep up. Kids going through cancer treatment are usually given Beads of Courage, beads collected on a string, each color representing different achievements like the number of surgeries or nights spent in the hospital. I proudly attempted to tally these beads, each one a testament to how tough and strong my little boy was.
Over Dylan’s five years battling osteosarcoma, I was able to count 20 surgeries, 39 radiation treatments, 5 chemotherapy protocols consisting of 10 chemotherapy drugs, 5 targeted therapies, and 2 immunotherapy trials.
Scans, needle pokes, and nights in the hospital? There were too many to count and I lost track.
Then there is the number that I find exasperating and is the rallying cry for much-needed advances in osteosarcoma research.
The treatment protocol for osteosarcoma hasn’t changed in 40 years.
Do you know what else was invented in the 1980s? Personal computers, Sony Walkmans, CDs, VHS, and disposable cameras. Our world has drastically advanced and improved — we’ve gone from VHS to streaming! But osteosarcoma toxic treatments and poor survival rates are stuck where they were 40 years ago.
Here’s a number that defies logic.
Dylan lived 49 days past the five-year cancer survival rate mark.
He is many things — our smart and sweet boy, a good friend, a fighter, a superhero, an inspiration — but unfortunately, he is not a survivor. Making it past five years may place him statistically in the survivor bucket, but it does not replace the enormous hole Dylan’s passing has left in our lives.
The only way to improve survival rates beyond the five-year mark is to invest in and foster research to find more effective treatment options. Curing cancer seems like an insurmountable goal, but it doesn’t have to be.
During Dylan’s battle, I approached treatment as a series of lily pads in the pond. We didn’t need a miracle cure to get across the pond to dry land. We just needed a treatment that would keep Dylan afloat until the next lily pad floated by.
New technologies like next-generation sequencing and CRISPR have accelerated research and drug discovery. Two of Dylan’s targeted therapies that were effective, even if just for a short while, received FDA approval in 2018 and 2019, which means they weren’t even available when he was first diagnosed.
That means every little step in improving treatment options could provide the lily pad a child needs to make it to the next one, until one day, there is a 100% survival rate. Now that’s a number I can get behind.
The 5-year survival rate for childhood cancers has risen to 84%, overall, according to the National Cancer Institute, but 1 in 5 kids diagnosed with cancer still won’t survive. This is why the St. Baldrick’s Foundation, a national non-profit, is passionate about funding research in survivorship. Because five years is not enough.
