My son, Joshua, was 12 years old when his battle with Burkitts began. This healthy, normal pre-teen began to get sick. First it was the strep-like infection. Then it was the constant nausea. The weight loss. The decrease in activity. Joshua one day began complaining of excruciating pain in his teeth. We did the doctors, the dentists, the bloodwork, the MRIs, the infection control specialists…. all with no results. No one could figure out what was wrong with him. This was the worst time. Joshua missed a month of school during this time period and lost twenty pounds. We were pulling our hair out in desperation.
Finally, on March 9, 2011, Joshua doubled over with stomach pain. After a long, miserable night, I took him to our local pediatric emergency room. We were there for twelve hours. Even though his WBC count was unbelievably high, the doctors couldn’t figure out what was wrong. Xrays didn’t show much except for a little fluid in his abdomen. We were told that perhaps it was his appendix, or maybe kidney stones. I tried telling the ER doctor about the month he had had, but we were told that it wasn’t relevant and perhaps Joshua was just under stress.
One wise resident decided to order a CTscan. A half hour later we were told that Joshua had two grapefruit-sized tumors in his abdomen and would be taken immediately to the pediatric oncology unit. We were told that he had either Stage IV lymphoma or leukemia. Turns out he had Burkitts Leukemia (just like Burkitts lymphoma except his bone marrow was riddled with the cancer).
That first week was hard. He was started on chemo right away and suffered terrible tumor lysis. His whole body froze from the lack of calcium, his kidneys were failing, and we were warned to expect a seizure. Thankfully that never happened.
Joshua spent most of the first four months in the hospital between the chemo and the infections. Morphine became our friend. But the end was in sight! Joshua was scheduled to have a total of nine chemo rounds and by the end of the 7th, and solidly in remission, he was starting to feel a bit normal again.
Then, out of the blue in August 2011, he got a headache. Usually that meant that he needed a blood transfusion, but his counts were fine. We were told to give him a stiff cup of coffee! But three days later, with no relief, Joshua told us that something was wrong and he needed to go to the emergency room.
The cancer was back. This time in his CNS. The hospital called in an off-duty OR team to do his bone marrow and spinal fluid tests. Joshua began having seizure-like activity, his face became paralyzed, and he had an abnormal EEG. We were told that he may not make it through the weekend.
Well, he did! We were told that there was no protocol to treat him, and that we should consider palliative care. But our wonderful doctors found five other children from around the world whose cases mirrored Joshua’s, and we pieced together a protocol from the ones they used.
Joshua had two weeks of cranial radiation, and had an ommaya placed in his head to be used in place of the intrathecal chemo we’d used before. He had another ten rounds of chemo and went off treatment 4/12.
I had never heard of Burkitts before my son got sick. Our hospital had only seen a few cases over the years. Most of our oncologists had never treated anyone with Burkitts. Joshua had a very difficult year. He missed half of 7th grade and all of 8th grade, being too sick to even tutor. Most of the year was spent in bed or in the hospital.
But God is merciful. He’s rapidly recovering from his battle and looks forward to going back to school in the fall. He has a full head of hair for the first time in fifteen months! During his battle with cancer, Joshua endured: 20-30 trips to the operating room, 6-10 trips to the emergency room, tumor lysis, facial paralysis, seizure/stroke activity, 3 days of stem cell harvesting, lung collapse, oxygen tube, intubation, dozens of blood and platelet transfusions, an ICU stay, hundreds of needle pokes, more scans than I can count, surgery to implant a port and the ommaya, and 17 round of chemo (oral, systemic, intrathecal, intraommaya).
Plus a few times when we were told we could lose him at any moment. This was the hardest thing I could have imagined going through as a parent, and we don’t know what the future holds. But for now, we’re thankful that Joshua is still with us, we have hope for the future, and know that no matter what happens, Joshua is being carried by his God. And that this fight has not been in vain. We’re both stronger people for having gone through this.