Rhabdomyosarcoma
Written by Anna
After what felt like an eternity of waiting, on May 29 we finally got word that the biopsy results had been relayed to our doctors. Our nurse told us that some of our doctors would meet us in a conference room down the hall to discuss the results. As we walked into the room, we were greeted by our NICU attending and resident, and two men that we had never met before. The second I saw them I somehow knew that they were oncologists. The room was somber as our neonatologist began speaking,I don’t remember much of what she said beyond “I’m sorry, but Linus has rhabdomyosarcoma.”
The conversation was soon taken over by the oncologists joining us. I knew little about rhabdo other than that it was an aggressive type of muscle cancer that individuals with Beckwith-Wiedemann Syndrome are predisposed to (yet it is still extremely uncommon for a child with BWS to get rhabdo). The oncologists told us that while, yes, rhabdomyosarcoma is known to be aggressive, it also tends to respond very well to chemotherapy, which we would need to start promptly. Zach and I asked to have the rest of the day to process this new diagnosis on our own before getting into the details of the treatment plan.
While that day was truly horrible, looking back I feel a sense of gratitude that we got that dreadful news the way we did. I am most thankful that we were in the NICU in the first place. If we were outpatient, it likely would have taken much longer for us to get a biopsy, and who knows how much farther the rhabdo would have spread by the time we would have gotten the results and started chemo. Also, I feel very grateful that we had the doctors and nurses we did that day. They were some of our favorite people we had providing care for Linus during our time in Seattle, and it was a comfort to have people who we knew truly cared for our family supporting us during this difficult time.
The next two days after Linus’s diagnosis were overflowing with various types of imaging, going back to the OR for a central line placement, bone marrow biopsy, and lumbar puncture, Linus finally being extubated after all of his airway procedures, and Linus’s first round of chemo. It was also full of conversations with oncologists explaining the chemo regimen we would be following, side effects from each of the drugs Linus would be treated with, and what it’s like caring for a child with cancer. We quickly built a lot of trust with these new doctors and appreciated how they encouraged our heavy involvement in our son’s care.
Linus’s first round of chemo was done overnight, just two days after we got his diagnosis. It took 8 hours for all of the chemo drugs, fluids, and medications to minimize side effects to be administered, and overall it was much more anticlimactic than expected. Linus woke up the next morning feeling great… until the nausea set in. A variety of intense GI symptoms began to manifest over the coming days, ultimately leading to a diagnosis of necrotizing enterocolitis. Another week of bowel rest, meaning Linus could only receive IV nutrition, and a course of antibiotics had Linus feeling mostly better and ready for his next round of chemo.