7 MRIs. 6 CT scans. 2 surgeries. Weeks of crutches and physical therapy.
It’s been 17 months now since Hannah’s surgery to remove a hemangiopericytoma from her right knee last year. She was lucky, as far as cancer goes – her soft tissue sarcoma (tumor) was located near the skin, easily visible, and could be removed with a minimum of effort.
‘Minimum’ being a relative term, of course. There was a rather extensive procedure to rebuild her knee after the tumor was taken out, which involved moving a portion of muscle from her calf to her knee and taking a graft of skin from her thigh to cover the knee with afterward. There was certainly not a ‘minimum’ of pain or recovery afterward. I only say a ‘minimum’ of effort as compared to kids whose tumors cause them to lose limbs altogether or leave them unable to regain the motion and/or use of it that they previously had. I count our blessings every day that only a ‘minimum’ of effort was required for Hannah’s tumor.
Hannah was also fortunate in that her tumor was not immediately life-threatening, nor did her doctors feel that chemotherapy was necessary or would be effective in her case. And so far all of her follow-up scans have been clear.
Many, many kids are not so lucky. According to the American Childhood Cancer Organization:
Each year in the U.S. there are approximately 13,400 children between the ages of birth and 19 years of age who are diagnosed with cancer. About one in 300 boys and one in 333 girls will develop cancer before their 20th birthday. In 1998, about 2500 died of cancer, thus making cancer the most common cause of death by disease for children and adolescents in America.
But childhood cancer isn’t just about statistics – these are all real kids who get cancer, and not all of them survive it. Just last spring our school district was rocked by the death of a high school freshman who had a reoccurrence of Ewing’s Sarcoma, a rare form of bone cancer. When Hannah was in the hospital following her surgery, we saw or met several kids whose lives had been interrupted and threatened by various forms of cancer, and not all of them survived either. Kids with cancer undergo painful surgeries, multiple tests and scans, endure chemotherapy and/or radiation, and miss out on so much of the enjoyment of just being a kid.
Even Hannah’s relatively minor experience caused her to miss weeks of school, her spring seasons of soccer and Girls on the Run – and rarely does a week go by where she doesn’t have to answer questions from people about the very visible scar that makes up her right knee. Although the scar is much improved over how it looked last summer, it’s always going to be there and she’ll have to field questions about it every time she wears shorts or a bathing suit. I love that she doesn’t feel embarrassed or sensitive about the scar – she is just plain ‘over’ everything that she went through and she’d rather answer questions than try to cover or hide her scar. But I worry that may change as she gets older, and especially once she hits the already-difficult teenage years.
Every time Hannah goes in for scans, I’m a nervous wreck. Actually, the worry is never completely out of my mind. The best prognosis for hemangiopericytomas is in kids less than a year old when diagnosed. These tumors are rare, but in kids older than a year they are known to spread, usually to lymph nodes and lungs. Thus, Hannah’s now twice-yearly scans… My dad was also diagnosed with a soft tissue sarcoma recently – his is not the same type that Hannah had (he has a rhabdomyosarcoma, almost always only found in kids under the age of 5 – he is 85, go figure…), but apparently rare tumors seem to run in my family? Not sure if they’re at all related, but it is strange. Thankfully his is not life-threatening either – but there’s a huge difference between cancer in an 85-year-old (who is looking at a maximum of 15 more years of life if he were to theoretically live to be 100 years old) and a 10-year-old (as Hannah was when her tumor was discovered), who has 90 more years to live to reach that same 100 year age. Why is pediatric cancer not more of a priority when it comes to funding for research and new treatments?
It will take effort and awareness on all of our parts to change those statistics I quoted above. Kids can’t vote or always advocate on their own behalf! Please help support childhood cancer awareness and spread the word that September is Childhood Cancer Awareness month. Let’s make September as gold of a month for pediatric cancer awareness as October is pink for breast cancer awareness. Cancer can strike any kid, at any time. I began 2013 never having heard the word hemangiopericytoma, and now I’ve written it on so many hospital forms that I can spell it without having to even think twice. For the rest of her life, Hannah will be a cancer survivor.
Please, help spread the word and Go Gold for Childhood Cancer Awareness this month. For all of our kids – those who have already fought cancer, who are fighting right now and for those whose fight hasn’t even begun yet.
Thank you to Jenn Brown for use of the #GoGold graphics!