September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Kathryn Bryson
“Never give up, this may be your moment for a miracle.”
This has become our motto the last four years with my son Bryson. He has been up against some of the hardest battles, but has been blessed with even bigger miracles.
Jan 28, 2009, a day I will remember forever, just like it was yesterday. This is the day we were thrown into a world we knew nothing about, one that would change us in every way for the rest of our lives. The world of childhood cancer, something we knew little about, but that we would quickly learn.
- 46 children are diagnosed with cancer each school day
- 7 children die each day
- it is the leading cause of death by disease in children and adolescents
- 80% of children diagnosed with cancer already have advanced disease, spread to other areas of the body at the time of diagnosis
- childhood cancers are biologically different then those of adult cancers
- 2/3 of survivors later experience significant or chronic medical problems or develop secondary cancer later in life from the treatment they received for their original cancer
This is a world that you never get to leave, but after the initial shock and grief lessens, you find the fuel to fight like hell to change it and make the road better for others so that one day no one will have to feel the pain you have felt.
I could still tell you what we were wearing that day it is burned so clearly into my mind. This is the day my not quite 5 month old baby was diagnosed with cancer.
Over the next few days the news just seemed to get worse, and when all the tests, biopsy, pathology were complete we now knew our baby was up against the odds. He was diagnosed with neuroblastoma, stage 3, high-risk with unfavorable pathology. We were given a bleak 25-30% chance of survival.
The raw pain and emotions you experience at that time are so intense you can barely breathe, but you don’t have time to take it in before big decisions need to be made and treatment starts. You read protocols in a haze and hear risks and side effects that you can’t even think about, because as you are there listening, you know a monster is growing inside your baby trying to take a beautiful life and you need to do whatever you can to stop it.
So treatment started within a day or two. It was a long grueling road, but we were going to take it one step at a time. Bryson’s treatment consisted of six rounds of high dose chemotherapy. He actually got seven rounds because they started him on an intermediate protocol and then when his final pathology came back he had to be moved to the high risk protocol, then, after the fifth round of chemo on the high risk protocol, they also had to take his right kidney because it was too involved with cancer.
After tumor removal and the last round of chemo came scans which officially came back as NED (no evidence of disease). We rejoiced, but that wasn’t even close to the end. The next step was stem cell transplant and Bryson was entered into a clinical trial to receive two back-to-back transplants. This was by far the harshest part of treatment. Chemo is given to the point of death and the body unable to recover without the stem cells they had harvested from Bryson earlier in treatment. Then just as Bryson was starting to recover and get back to himself, you go back and do it all over again.
After the second transplant he moved on to radiation and had twelve radiation treatments, each of which he had to be put under anesthesia because he was too young to know not to move. The final six months of treatment included five rounds of human antibody therapy, which is extremely painful and requires a morphine drip to tolerate. And then six rounds of oral Accutane.
Finally treatment was done.
Bryson was still NED and we were supposed to learn how to be normal again in between every 3 month scans. Bryson began getting stronger and learning new things as a two yr old should. He finally started walking, he was happy and playful, he was getting hearing aids to help with his speech development because chemo had caused hearing loss, and we were even starting to think about preschool the following year. All the while we got more and more nervous with each upcoming scan, knowing reoccurrence was highest within the first year out of treatment.
Then it happened. September 1st. 2011 our world was upside down again and again we were in a fight for Bryson’s life. This time it wasn’t cancer, but a side effect of the chemo he had received to save his life. We learned that Bryson had progressive scarring of his lungs that was irreversible and was quickly progressing. Now we were in a battle without options to “fix” it, within a month from finding out what was causing his severe coughing attacks he was on oxygen all the time. Over the next nine months we tried high doses of steroids, but his oxygen need was increasing constantly. By June we were out of options and we knew the only and last chance to save Bryson was to look into lung transplant. We traveled to St. Louis for evaluation and were quickly told he needed to stay and be listed immediately, his lungs by that time, were only functioning at 35%.
He was admitted to the PICU the next week where he went downhill very fast. Bryson waited twelve weeks on the top of the list and ended up on a ventilator the last two weeks. We had some of our darkest days during that time. Helplessly sitting by your child as you see him struggle more and more to breathe each day. He had terrible coughing attacks that you didn’t know if he would come out of, and we watched his body grow weaker and weaker.
All this happened while separated from our family, me in St. Louis with Bryson, and my husband and other son Braydon back home in Toledo. We didn’t know if Bryson would ever make it out of the hospital, let alone back to Toledo. Each day passed and we were facing last options of life support.
Then it happened. Bryson’s miracle was here.
We got word in the early morning September 1st, 2012 that there was a donor match and Bryson would go into surgery that evening. We didn’t know where they were coming from or what had happened, only knew that the donor had to be close in size to Bryson. That evening Bryson’s damaged lungs were removed and he was given an angel’s lungs. A gift from a grieving family that in their time of tragedy, choose to give life to someone else.
It was a long recovery, but we finally were able to come back home in December. Since then, Bryson has been thriving and making up for lost time. He has always remained full of spunk and attitude and even when he felt his worst he was full of life. He doesn’t give up, so we don’t give up. And that is how we will continue to live, everyday to the fullest, because everyday is a gift.
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Filed under: Childhood Cancer Stories 2014