Jonathan was always the healthiest of his siblings, so when he developed a limp in June 2013 that lasted more than a week, it prompted his mother to take him to the doctor.
As the doctor examined him, she became concerned when the source of his pain was isolated in the sciatic area. Immediately, Jonathan was scheduled for an x-ray, and by the end of that day, was sitting in an oncology clinic.
Within a week’s time, after a whirlwind round of extensive medical testing, Jonathan was diagnosed with Ewing's sarcoma, localized in his pelvis. Though the grim diagnosis, the family was hopeful. They were told that they had caught it early, and with surgery and/or radiation, they should be able to eliminate it.
Soon after his diagnosis, Jonathan began six preliminary rounds of chemotherapy. Despite his terrible nausea, his counts recovered well each time, and he was able to stay relatively on schedule. Once he completed his rounds of chemo, scans were done in preparation for surgery. Unfortunately, the scans showed more spots, and a biopsy confirmed they were also Ewing's.
At this point, surgery was no longer an option. He was switched to an alternative chemotherapy, and had thirty-one sessions of radiation along with it. In October 2014, he completed chemo, and all the lesions were stable. In an attempt to return to normal life, Jonathan returned to school on a part time basis. At the time, Jonathan and his family thought they had three months before he was required to do more scans, but, as it turned out, it was just 3 weeks.
In that short amount of time, Jonathan was complaining of pain in his clavicle. They wanted to believe it was caused by playing in the band again, or carrying his backpack after so much time away - anything but cancer! Unfortunately, that was not the case, and the scans came back showing more tumors. This time, local treatment was not an option.
They traveled to Charlotte, North Carolina, to meet with the “Ewing's Sarcoma Guru,” Dr. Anderson, at the Levine Children's Hospital. He spoke about an oral chemotherapy option that Jonathan could take for the rest of his life, if it could stabilize the disease. He also spoke about a new proton radiation center that had recently opened near their home. Within a week, Jonathan was seen at the proton radiation center, and his treatment was prioritized. By the following week, he started his new treatment plan.
By the time treatment started, the tumor at the base of his skull had caused his face to droop as if he had had a stroke. He also had a lemon size tumor on his left side. The radiation worked better than expected, and he recovered enough to go on his long awaited “Make a Wish” trip to visit family in Mexico, and spend a week in Cancun. However, his energy levels didn't recover the way they had in the past, and he chose to use a wheelchair throughout the stay.
Upon return, Jonathan had developed a cough that was so violent it would cause him to throw-up. He was taken to the hospital where he was admitted to the ICU with fluid on his lungs. He was inpatient for 10 days when the family suffered another devastating blow. Dr. Anderson, unexpectedly resigned, leaving the family feeling deserted and hopeless.
During his hospital stay, Jonathan did show some improvement which caused some confusion as to why the medical staff continued to talk about hospice care. It was then that his most recent scans revealed the cancer had spread everywhere except for his head, and from the knees down. He was enrolled in hospice and brought home.
Jonathan didn't want to die in the hospital, and his family could not bear the thought of him passing away at home. In the end, he picked an in between place, the oncology clinic. On February 3, 2015, Jonathan passed away relatively peacefully while awaiting hospital admission. He was 15 years old. Jonathan bravely fought against the disease for 19 months. As of February 2017, he has been gone as long as he fought. It is his family’s hope that someday, there will be no one who has a similar story about Ewing's.