In Support of Parents

Coping with emotions during the unimaginable – pediatric cancer
Kathryn Vinson, MS, CCRC

The last three weeks here at my house have been an absolute mess. My two boys have each had a case of strep, and the oldest is starting to battle migraines. The big one just came down with strep, as his little brother had it last week. With my little guy, it was a terrifying point when an ER doc told me that she thought that strep had settled into his tummy, and she believed that it was mesenteric lymphadenitis. OMG – that’s a lot of big scary words. Even more scary – differential diagnosis for those enlarged lymph nodes in his belly could be lymphoma. Lymphoma is a scary word at any time, but when you’ve already had a family member fight that dreaded disease – it takes on a whole new level of scary. Knowing that a round of antibiotics will likely knock it out gives comfort, but those fears from two years ago do tend to rear their ugly head. As parents, our worst nightmare is that our child will be diagnosed with a terrible disease, something that we can’t make right with cuddles, a Tylenol, or even an antibiotic from the pediatrician.

Parents with children facing challenging medical conditions, as would be expected, feel a whole host of emotions. Anger, despair, helplessness – none of the feelings are out of the realm. All we have to do is look at our social media feeds and we will likely see the story of a child or teen fighting cancer. We follow their journey, pray for that child, and hope for the best. But what do you do when you are the parent of that child that is suffering? How do you remain strong when your baby is battling a sarcoma or leukemia and not something simple like strep?

The niece of a high school friend of mine valiantly fought rhabdomyosarcoma, but unfortunately succumbed at the tender age of 4 ½. Raelyn’s mother has sweetly agreed to let me share some of her story with you.  Despite my background, rhabdomyosarcoma is one that I had never heard of.  According to the American Cancer Society, this awful disease accounts for 3% of all childhood cancers and develops from embryonic cells called rhabdomyoblasts.  These cells typically go on to develop into skeletal muscles – what we sometimes call voluntary muscles. This embryonic derivation is why it is so common in kids.

I became aware of Raelyn’s battle when my friend shared the page “Save Raelyn” on her Facebook feed.  Raelyn’s mother used this page as a way to get information out to family and loved ones, as well as increase awareness of this terrible cancer.  This platform increased community awareness of Raelyn’s fight.  This awareness brought about numerous prayers, outpourings of love, and fundraisers for her care. I will never forget the precious pictures of her spending a day at a local vet; her joy at helping the animals with her Doc McStuffins medical kit was one of the sweetest images I have ever seen. Since Raelyn’s passing, the page has been renamed “Remember Raelyn”. Out of Raelyn’s fight came an amazing organization called “Operation Snowstorm” that provides a time to play in the snow to children that are fighting terminal cancer.

Here at Cancer Horizons, we also advocate the use of closed Facebook cancer groups as a method of finding a community of support.  These groups are often set up by the type of cancer that they support.  A quick search for “Pediatric Cancer Support Groups” on social media will provide you with a long list of just those groups.  Here you will find people that have been there before or are going through similar journeys. Love, support, and prayers from a group of people that aren’t out to judge, as is so common on social media platforms, is invaluable to a parent during this terrible time.

In our society, so often both parents need to hold down jobs, but when cancer strikes a child, one of those parents may need to quit their job to be at their child’s side.  This can produce terrible financial burdens. These pages dedicated to a pediatric cancer patient have also been key in producing fundraisers and in providing crowdfunding resources.  If you or a loved one have a child battling cancer, please also take a look at our pages dedicated to financial assistance for Pediatric Cancer Help and Caregiver Assistance.

Please also take a minute to read “8 Things You Should Know About Parents of Childhood Cancer Warriors” for some fabulous dos and don’ts when speaking to these very special people. Sometimes our most well-meaning comment can bring on a host of emotions that we would never imagine.