Our son was 31yo when he was dx'd with Burkitt's in 2008, was inpatient 10-12 days for every round of chemo with 11 intrathecal injections and lots of complications. At the end of his regimen he was also dx'd with spinal stenosis and common variable immunodeficiency (CVID) which means he has no immune system and needs 10-12hr immunoglobulin infusions (IVIG) every 28 days. But he survived it all. In January 2015 he had a recurrence of Burkitt and received only 2 rounds of chemo because a mass in the right atrial wall was discovered and his intense chemo would most likely blow out his heart wall. His doctors wanted him to keep going but our son wanted to travel & enjoy whatever time he had left. By then it was March and his prognosis was 6-9mos. Knowing your son, no matter what age, is terminal is rough. With the nurses and doctors from home hospice, we watched his decline. Thanksgiving 2015 they advised us to celebrate Christmas as well as he wouldn't be with us much longer.
That was over a year ago. HE IS STILL HERE! None of his specialists, nor the hospice nurses and doctors, can explain how or why or what happened, but his Burkitt's somehow went into spontaneous remission. Over the course of 3 days, a week before Christmas 2015, as my husband and I watched, his vitals improved, his color returned, his breathing normalized. We witnessed it, but we can't explain it either. In early 2016 a PET-CT showed all the areas where the lymphoma had been growing to be clear. His primary oncologist, among many, is still perplexed, and they're all convinced it will return at some point.
For 9mos our son prepared to die. He gave almost everything he owned away, he'd made his peace with having to say goodbye. He continues to suffer high levels of pain because of the CVID and spinal stenosis, and continues to experience many symptoms commonly related to NHL, yet so far, tests come back clear. We're grateful he's still here, but we also want him to have some quality of life. He tries so hard to be upbeat, but I see lately how his chronic pain is wearing him down finally.
No one, not his doctors or any members of the groups I've contacted, know of another case parallel with his. We're hoping at some point to find someone somewhere. I apologize for the length of this, but appreciate the opportunity to tell his story.
