The ugly truth

Updated: Jul 24, 2018

I certainly wasn't surprised that the realities of childhood cancer were less than pleasant, but it wasn't until I was active in support groups that I truly realized the extent. Nothing represents this more than the fact that in less than a month, four children--just of those whom stories I followed through these groups--have died of rhabdomyosarcoma. And I know of at least a few more who are close to winning their fight by gaining their wings.

With rhabdomyosarcoma, the majority of those diagnosed are placed into the intermediate or high-risk categories (risk being the chance that the disease could recur after treatment). If you are in the high-risk category or your disease relapses, it is very difficult to treat. Many of the standard protocols are not successful and patients have to try to enter clinical trials for the best chance at survival.

In addition to these stats, the treatment that every patient receives, regardless of risk category can cause a whole bunch of issues. Yes, most patients lose their hair but many of them experience mild to severe discomfort and pain: vomiting, mouth sores, tingling or pain in fingers or toes, or difficulty walking due to drop foot. These side effects can land patients bed-ridden or even in the hospital for management.

We have been so fortunate that Austen has experienced mild side effects. During her longer chemo days, she did vomit a lot, but we only needed to be admitted once to control it. She occasionally complains of other aches and pains but none that sidetrack her for long.

Some chemo days made Austen very ill. This one landed her in the hospital overnight.

During her first chemotherapy appointment, we, like every other new patient, received a lot of information about what could go wrong during treatment. We had explicit instructions on how to handle fevers, illnesses and other ailments. We were warned that it was extremely likely her counts would fall low and that she would require blood transfusions--a warning that was echoed by other parents I had contacted for guidance during those first, frantic weeks. I was fearful we would spend a considerable amount of time at the hospital for chemo-related issues.

Well, Austen has had amazing counts throughout treatment and as she only has four more left, most of my fears had been allayed...until last Friday. Her hemoglobin count was the lowest it has been--a cumulative effect of all the treatments--and we were told that if it fell too much lower that she may indeed need a transfusion. We are hoping her counts bounce back up this week and that is not necessary. But that earlier fear came bubbling back up and it served as a reminder that anything is possible until we are completely clear of this part of her journey.

It also made me appreciate that although we have been lucky, that simply isn't the case for many patients. The truth is that many do experience those pains to high levels and that many need multiple transfusions to counteract the toll chemotherapy takes on their young bodies.

Until a cure is found for rhabdomyosarcoma, we must have the financial support needed for medical researchers to find less toxic treatments. Our children deserve medicines that don't ravage their bodies while trying to heal them. We all deserve better than the heartbreak of four deaths in the past month.

I sincerely hope that the more people who become aware of rhabdomyosarcoma and the effects it has on its patients, the more they will be motivated to contribute. So, have you been motivated yet?