It’s painful to type “that word” let alone say it. We’ve spent the last 2 ½ years desperately trying to escape it. But, on September 9th we were informed John had relapsed. We are devastated, truly heartbroken. With only 14 weeks of treatment to go, hearing his Leukemia has returned has once again brought us to our knees.
How did we find out? Over the last month, John’s counts had been low. Even after holding chemotherapy for a few weeks he wasn’t bouncing back. We prayed it was just suppressed bone marrow from years of chemotherapy. I had a feeling things weren’t right, just as I did years ago, so I asked if we could bring John to St. Jude for an MRD test (a highly sensitive test performed at STJ – testing for minimal residual disease) as well as testing for bone marrow failure. The initial tests looked good so Rich & John hopped on a plane back to Charlotte. Before they even got to baggage claim Dr. Pui called, John’s bone marrow aspirate showed he was MRD POSTIVE - 0.06% Leukemia cells present. When I swung around to pick them up I could see tears pouring down John’s face and heartache in Rich’s eyes. I knew. My body started to shake as my heart broke.
Where are we now? We are back at St. Jude, residing at the Target House II (long-term housing).
Target House II
1811 Poplar Ave.
Patient: John Hagen Room #519
Memphis, TN 38104
How is John feeling? He just finished 7 days of inpatient High Dose chemotherapy, ReIntensification. (we are praying this is enough to put him back into remission, 0.00% cancer) He is totally wiped out – physically and mentally exhausted. The reality of his relapse has started to sink in. He is determined to fight for his forever cure but apprehensive about the unknown road ahead. He’s quiet. He’s trying to be strong – for himself and for us. It’s heartbreaking to think just a few short weeks ago he was at school, hanging out with friends, dreaming of his end of treatment day - he was finding happiness again. It’s painful to watch him deteriorate.
What’s the plan? John is on the path to transplant (Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation). I will be the donor. This process is new to us and we don’t have all the details yet. We are meeting with the head of transplant, Dr. Wing Leung (the Dr. Pui of transplant), on Wednesday. After we educate ourselves on the process I’ll post the details. By the time we get to transplant, this momcologist will have the protocol memorized!
What do we need?
* Prayers. Prayers for John’s cure, strength to walk down this new path, and courage to stare fear in the face again!
* Legos. Building Lego sets has always been therapeutic for John so, I know he’d appreciate Lego sets. He created a Wish List on Amazon: http://amzn.com/w/24WYP211BEIRB - There is a big one on there we’re hoping to get before transplant (hint hint hint). It’s a STJ “tradition” for transplant kids to build gigantic Lego sets during the 100 days of isolation following a transplant.
Thank you for supporting our family.
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."