In October of 2019, we noticed Abel’s left eye had turned slightly. We took him to the eye doctor. The doctor prescribed Abel glasses because he was probably exhausted from studying and using both eyes. On November 10th, 2019, Abel woke up and was not able to move his neck. The next day, we took him to the emergency room. They did X-rays, and everything looked fine. However, they determined he had torticollis, a spasm of the neck based on the X-rays. It still was not better, so on November 14th, 2019, I took him to a different emergency room, and they also said it was torticollis and did a CT scan of his neck and spine, which did not show anything. On November 15th, 2019, I ended up taking him back to the first emergency room that we went to because it was still not any better, and they prescribed him pain medication and sent us home. At that point, he could barely walk.
November 20th and November 21st of 2019, this thing had paralyzed his arms and neck, and he could not even get his pacifier off his chest. We rushed him to Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville, Tennessee. They quickly did a CT scan which showed he had three masses of the brain. One mass was on his neck and one mass on his lower spine. So on November 22nd of 2019, they did emergency surgery to remove a mass on Abel’s neck that had been paralyzing him. The doctor told us that benign tumors do not spread.
I thought my world was coming to an end. Abel had to have extensive physical therapy because they were unsure if his right arm would move the same. But he recovered super well, and we got to go home just in time for Thanksgiving. They were still trying to determine what kind of cancer my son, Abel had.
On December 4th, 2019, Abel was asleep, and I was coming to bed to find him unresponsive. I immediately called 911, and I told them he was having seizures. They got him stable enough to life-flight him to Monroe Carell Jr. Children’s Hospital at Vanderbilt. Abel was there having a seizure for two days. The doctors did not think he would make it out of it, but they finally found medicines that helped. After a couple of days, he eventually became more responsive, but he was still intubated and could not talk to us but could nod yes or no and smile.
Since then, we stayed several months in and out of the hospital, a month at a time for chemotherapy. Finally, in January of 2020, the doctors determined Abel had pure erythroid leukemia (AML) of his central nervous system. So, from December 2019, through May 2020, we were in the hospital with one week off, and the rest admitted for chemotherapy. In June 2020, they placed an Ommaya Port under his scalp to send chemotherapy directly to the brain and so it could work its way down with gravity. In addition, Abel has MRIs every three months to keep an eye on his progress.
March or April of 2021, the doctors informed us the chemotherapy had done all it could do at this time. The doctors referred us to Liberty Township, Ohio, where Abel went through thirteen proton radiation treatments. In August 2021, we will have an MRI to tell us if all the treatment has worked. Abel was three years old when we started this nightmare, and now he is five years old.
Written by Kyrstn, the mother of Abel