Four-year-old Adan is a chef in the making – he loves his play kitchen, and one of his favorite activities is taking pretend food and making his parents and older brother Sammy “eat” it. Adan was born with Costello syndrome, a genetic condition caused by a mutation in the HRAS gene which, among other things, means he can only say a few words – but the words he does have, he uses to boss the family’s two dogs around.
For many cancer parents, a cancer diagnosis comes out of nowhere – it’s a terrible shock. For Adan’s parents, Sam and Rachelly, it was still a shock – but they and Adan’s doctors had been keeping an eye out for cancer since he was 8 weeks old.
Costello Syndrome and Cancer
Adan was diagnosed with Costello syndrome at 8 weeks old. Costello syndrome is an extremely rare genetic disorder resulting from mutations in the HRAS gene, and it affects around 650 to 1000 people worldwide. The HRAS gene instructs the body to produce a protein known as H-Ras. In people with Costello syndrome, the mutation causes cells to grow and divide all the time, not just when instructed to do so. Costello syndrome can cause issues that affect the brain, heart, bones, muscles, skin and spinal cord.
The genetic mutation that causes Costello syndrome also puts Adan at higher risk of certain cancers - which is why Adan gets ultrasounds every three months to check for tumors. During one of the ultrasounds, Adan’s doctor found a mass which was later removed. Biopsy testing determined it was rhabdomyosarcoma – a type of cancer.
Sam describes the diagnosis as a “gut punch.” Adan’s family was just getting the hang of caring for many of Adan’s Costello syndrome symptoms, and now they’d have cancer treatment on top of it all.
“When we first went to the oncology department, we saw a young girl there who clearly had cancer, and we instinctually looked away, because it’s not an easy sight to see,” Sam said. “I had to remind myself – that’s how people will see us now.”
Adan started walking around six months prior to his diagnosis. One thing his care team explained to his parents was that the chemotherapy treatments may reverse that milestone. Thankfully, Adan pushed through chemo extraordinarily well. He wobbled sometimes, but never completely lost his ability to walk.
Aside from his parents, the one other person who has never left Adan’s side is his big brother, Sammy. Sammy and Adan are just 11 months apart. Early in Adan’s treatment, Sammy was having trouble understanding why his brother was gone all the time, and Sam and Rachelly were nervous to expose him to the harsh reality of Adan’s treatments. But the more Sammy saw, the more he wanted to help his little brother.
Sammy’s teacher was aware of Adan’s diagnosis and often spent one-on-one time with him to allow him to express himself. Sammy enjoys drawing and often drew pictures of Adan in a hospital bed. One picture had a cross in it and he explained to his teacher that the cross was Jesus, and that Jesus was with Adan.
“When we decided to start taking Sammy to the hospital, we definitely saw a change,” Sam said. “Once he could see what his brother is going through, he stepped up his game, both in helping his mom and home and supporting his brother however he can. We’re proud of him for that.”
Today, Adan has made it through the worst of his grueling cancer treatment, which included 24 weeks of chemotherapy and 30 days radiation, as well as surgery, blood transfusions and more. The diagnosis affected everyone around Adan. Now that they’re coming out of “survival mode,” his family is in what feels like a period of post-traumatic stress.
“My wife and I don’t call it post-traumatic stress disorder (PTSD), we call it current-traumatic stress disorder (CTSD) because it feels like we are still in it,” Sam says.
Sam and Rachelly have found community through Facebook support groups of other parents with children with Costello syndrome and cancer. Sam says having support from people who understand what they are going through has been essential, since it’s hard for well-meaning family and friends to know how they can help.
“There was a specific period towards the end of Adan’s treatments where we felt we needed to hide some of the reality we were living from people around us, because it really scared them. Our reality was anything but pleasant and Adan started to show the treatments,” Sam said.
Sam says it’s been important for his family to share Adan’s story because he’s felt so much support from other families who have shared. “Two other kids around Adan’s age have been diagnosed with similar cancers recently, and we’ve been talking to them,” Sam said. “Sometimes it’s like we’re reliving it, but it helps to know you’re helping other families.”
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