Cancer: The parents' story

Note: I am participating in a seven-day blogging challenge, called the Write Tribe Festival of Words. Write Tribe is an online community of bloggers that "urges you to write bravely." The day six prompt is to either feature a guest blog post or to interview someone. I am sharing parts of two interviews that I did recently with parents of children who have been diagnosed with cancer.
link to Write Tribe

Matthew and Mark, honorary
survivors at the 2017
Grand Island Relay
for Life, held on June 9th.

Matthew was diagnosed with Birkitt's lymphoma when he was five years old. As of June, he has been cancer free for eighteen months. In September, he will begin third grade. I spoke with Matthew and his parents, Tracy and Eric.

Logan was diagnosed with a rare form of cancer, called Langerhans cell histiocytosis, when he was two and a half years old. In September, Logan will start kindergarten. I spoke with Logan's mom, Trish.

Issues facing families when children have cancer

Tracy: We realized that we were not the only family. We met other families who were in way worse shape than us, with the care of their children. Even though your child has cancer and has lost feeling in his foot, there are other families who have lost their child. And now they are angels. Children are innocent. They shouldn’t be fighting these horrible diseases, and they shouldn’t be getting adult drugs.

Eric: We need more focus on pediatric cancers. The kids are getting left behind.

Tracy: they only get four percent of the money that is raised. You want cancer to be gone, but it seems like they are treating cancer backwards. They should start treating cancers with the kids because we have to figure out why they are getting them. They didn’t smoke, and they didn’t drink. They need to find what works for kids.


Trish: My son was two and a half when he started complaining of back pain. We took Logan to the pediatrician. The doctor ordered X ray. They looked at the X ray and said that there is something not right here. We had an MRI done. It was a long day in the hospital. At two and a half years, he had to be sedated. Various people came in, including a hematologist-oncologist. After a biopsy, they found it is was a form of histiocytosis, called Langerhans cell histiocytosis or LCH.  One in 200,000 children are diagnosed with this. It is a fairly rare type of cancer. He did steroids and chemotherapy for a year to treat it. It was done at different intervals and went pretty smooth. There isn't much funding for this. 

Eric: They use adult drugs for pediatric cancer. There is no research and funding to look for other treatments for kids. When an adult gets these drugs, they don’t live long enough to know what other functions are affected. With a kid, they don’t know the long-term repercussions. They need additional research. 

Health, hope, and challenges

Tracy: Matthew is in remission. We had an 18 month goal. His type of cancer has a high rate of recurrence within that time frame, so that was our first goal, to make it that far. We do weekly infusions.

Eric: His immune system has not recovered. He gets weekly injections to boost his immune system.

Tracy: There are always germs. When we first sent Matthew back to school after treatment, he missed twenty days out of forty days. So that’s when we started the weekly injections, and that has helped keep his immune system to a fairly normal level, so he fights colds like a normal kid. What would happen before was one kid would get a runny nose or a cold but Matthew would end up with the flu because his immune system was not there.

Eric: We are more perceptive of stuff now; other stuff doesn’t really matter.

Tracy: We try to appreciate our family time together

Eric: It opens your eyes. We were that close to losing him so it makes you think. Financially, it’s a burden. Tracy no longer worked full time because she had to take care of Matthew. You have to cut back on stuff. It totally changes. We had to rip out the rugs. They are a germ factory. We had to throw out plants because they have mold. All of the stuff you took for granted, you no longer take for granted.

Trish: Logan does pretty good. He starts kindergarten in the fall. He is a remarkable kid. When he complained about back pain, he just said my back hurts and pointed to it. Typically, with this type of disease, there is a lot of pain.  We figured that he had a high tolerance for pain. He never complained about earaches, sore throats, etc.  

Activities for young cancer survivors

Matthew: Golf is really fun. I can get outside and smell the fresh air. I can hit pretty far. I like to get the ball in the cup. That’s my favorite sport. 

Eric: We play golf because it is a form of exercise he can do in the summertime because of his dropfoot. Baseball, hockey, physically active running sports are activities we are trying to stay away from until we know that his leg is getting better and getting healed. Golf isn’t that exertive on the leg. Matthew likes swimming but we don’t have our own pool. We will get one one day.

Trish: No contact sports. No bounce houses. If he gets a direct impact to that part of his back, it could cause a lot of issues. Logan did baseball with little league. We are trying to find stuff that he could do. We don’t know how long it will take for bone to regrow itself on the spine.