Elijah's Complete Journey
Beginning in late 2013, Elijah started complaining of his neck hurting. He was a very active third grader, playing baseball and basketball and always outside with his friends. The pain wasn't constant; however, we decided to see the doctor to relieve his pain. The pediatrician felt confident it was a muscle strain and would heal on its own over time.
After heat packs, massages and medications, the pain was still there. At this time, his pediatrician referred him to a Sports Medicine doctor. She felt, as did his pediatrician, that it was a severely strained muscle. Because he is a bit of a worrier, she attributed the pain to muscle spasms ignited by stress. She referred him to a physical therapist.
All the while, the pain would come and go without any definitive triggers. He might play basketball one day and be fine. He could play another day and have to be benched because he was in so much pain. There seemed to be no rhyme or reason for the spasms/pain.
The physical therapist worked with him for several weeks. She was constantly touching/massaging his neck and never had a reason to think it was more than what the Sports Medicine doctor had diagnosed-a very strained, spasmodic muscle. We were constantly encouraging him to do the exercises and stretches the PT had taught him. No one had any idea what was going on inside his little body.
On Thursday night, May 22, he brought to our attention a knot he felt in his neck. It was about the size of a golf ball and was protruding from his neck.
When Elijah woke up Friday morning, there appeared to be a second knot. Becky called the after hours number. Upon learning of the duration of his pain and of the two knots, they told her to take him to the ER.
The ER doctors took X-rays, but soft tissue masses don't show up. Since he had been dealing with this for such a long period of time, his pediatrician pushed the ER to an MRI. Based on the MRI results, the doctors were confident it was cancer. Elijah was sent to Levine Children's Hospital at that point.
After a biopsy, numerous scans, and consultation with doctors around the US, it was determined that Elijah had Epithelioid Sarcoma. ES is a very rare type of cancer usually found in young adults; only 500 cases have been identified since 1970. However, it is even MORE rare in children. So rare in fact that Elijah is THE ONLY child to EVER have it in his neck.
Elijah's oncologist at Levine devised a plan for Elijah that included three phases; phase 1-radiation and chemo, phase 2-surgery, phase 3-chemo. This would be a long process with a surgery that would be life altering for him. We learned the cancer had woven itself into his vertebrae and was as close as you can get to, without touching, his spinal cord.
Epithelioid Sarcoma does not have a reputation of responding to radiation. So, after 30 rounds of radiation accompanied by oral chemotherapy, it was a miracle to hear that the tumor in his neck had shrunk by almost half. Phase one was complete, and we braced ourselves for phase two-surgery.
The risks involved with this intricate surgery were limitless. The tiniest of errors could leave him paralyzed, with vascular and/or breathing issues, or cause death.
Following a 12-hour surgery where his neck was completely reconstructed, we felt that we were facing another miracle. The surgeons got the entire tumor without any side effects or continued issues. They did have to cut a nerve which would leave him with limited use of his left arm, but other than that, he would be back to normal within time.
Elijah began weekly physical therapy, occupational therapy and began phase three--six months of oral chemotherapy. The purpose for the chemotherapy was to destroy any rogue cells that might have broken off during surgery.
As we were just a month from completing chemotherapy, Elijah began to have stomach pains. After numerous scans and biopsies, we were told on Easter Sunday (April 2015) the cancer had returned to the lining of Elijah’s right lung. Because of the location of the tumors, surgery was not an option. Elijah immediately began 30 more rounds of radiation—this time to his lung.
After completing radiation, Elijah complained with stomach pains, which we were told is scar tissue from radiation. In addition, Elijah had a damaged right lung and was basically working on one lung currently. Because the pain didn’t subside, another scan was conducted of his chest. The good news is that it appeared radiation killed the disease on his right lung, but the bad news is that a one centimeter tumor was found in his left lung. Unfortunately, radiation isn’t an option at this point because his left lung was his only ‘working’ lung and we cannot compromise that.
Epitheliod Sarcoma is a nasty disease, and sadly, invaded Elijah’s system. Therefore, a clinical trial was his only option. Unfortunately, the clinical trial was unsuccessful.
At this point, we were forced to face our worst nightmare: there was nothing else that could be done. The oncologist anticipated Elijah had only a few weeks based on how quickly the new tumors had formed and how quickly the older tumors had grown.
Within a couple of weeks, Hospice became our source of medical, emotional and supportive treatment. Elijah never stopped fighting. Right up until his took his last breath, he refused to sit back and let cancer take him easily.
Elijah joined his Heavenly home on November 10, 2015 at 10:52 p.m.
He will forever be the beautiful, vibrant, happy, selffless, courageous 10-year-old we all knew and loved. He made a difference in so many lives. The Prayers for Elijah Foundation will work to keep his spirit alive and help those traveling down the same path.
Elijah will be missed and always in our hearts. Faith and Believing Are Your Cure!