This is Rhabdo: James L.

In June 2017, 6-year-old James complained of pain in his groin. His mother inspected the area but didn’t find anything of concern so she figured he had rough-housed with his dad and pulled a muscle. Three days later he complained again. This time when his mother looked, there was a lump.

At first, James was misdiagnosed with swollen lymph nodes via a sonogram. His blood work was normal so James was simply put on antibiotics. Three weeks went by with no improvement and by this time, the doctors were concerned. The pediatrician asked for more blood work and another sonogram. This sonogram showed that his lymph nodes had tripled in size in three weeks and his blood work was no longer normal so James was sent for a biopsy.

The surgeon who performed the biopsy said he was “befuddled” by the results so they performed a CT scan. This local hospital then told James’ family that he had rhabdomyosarcoma but they couldn’t determine which type. However, they categorized him as Stage III and said that it wasn’t in his blood or bones.

Feeling uneasy with the care at their local hospital, the family went to Memorial Sloan Kettering Cancer Center in New York City with all the results. Within 10 minutes the doctor told them James had the alveolar rhabdomyosarcoma and that it was Stage IV, meaning it has metastasized throughout his body. It had started in his left calf and spread to his groin where the lump had been found.

Because the cancer was in both his bone marrow and lymph nodes, it was considered one of the most difficult cases to treat. Doctors said it was widespread in his lymph nodes, abdomen, bones, 80% in his bone marrow and possibly in his lung. They said there has only been one long term survivor with the same symptoms. James was expected to survive three years on average and had an 8% chance of surviving 5-6 years. When his mother asked what else we can do, she was told pray.

So James’ family treated him in an effort to buy time and prayed for a medical breakthrough or a miracle. James’ mother calls him a trooper through the chemotherapy portion of his treatment. He was treated outpatient and attended school with only one overnight inpatient stay for a fever.

James’ bone marrow didn’t clear by the planned beginning of radiation at week 16, so it was delayed until week 24 of treatment. The plan was to give him 20 days and if he could tolerate that, give him an additional eight-day high-dose booster to his femur. Radiation, which was significantly harder on James' body than chemotherapy, ended Feb. 21, 2018.

On March 13 when James went to receive his next round of chemo, they wound up doing scans and found that his cancer had progressed even further despite the chemo and radiation. His family was trying to get James on a clinical trial but they were made to wait two additional weeks after the final chemo dose, and by then the cancer had spread to his brain, making him ineligible.

It was then that the family was told the doctors would no longer treat him with chemo so James was given three last doses of radiation to the brain. The rhabdo in his orbit was still showing growth so the doctors said there was nothing left they could do. Finally, after weeks in the hospital suffering intense pain that could not be controlled even by multiple narcotics, James passed away at the tender age of seven on May 30, 2018.

James will be remembered as a sweet boy who was a huge fan of the NY Mets, enjoyed playing sports and with his dog, Spike, and loved his family and friends.

James’ mother stresses that rhabdomyosarcoma can often start with something as simple as a lump and the family’s experience is yet another example of the importance of listening to your gut when it comes to the care of your child, even if that means taking it upon yourself to find new providers and facilities that provide you with the comfort and answers you need.