At age five, on my fourth day of kindergarten, I was diagnosed with acute lymphoblastic leukemia (ALL). With the 85% survival rate for ALL, I was confident I would go through this for the next three years but one month later after the induction period, my doctor told us I didn’t respond and I may need a bone marrow transplant.
Since I’m a mixed-race, I was told the chance of matching my brother who was the most ideal candidate at the time, was only 25%. We found out he was a 10/10 match and on December 23, 2010, and he donated his stem cells.
My time at the hospital during the transplant was horrible. I had so many complications and screamed for days from the pain. Two months later, I was cleared to go home and from there I lived my life as a “normal” child. But close to age ten, I became a sickly child again. One day I was throwing up and missed school, so my mom brought me to my pediatrician. My mom insisted on getting blood work. They told us later that my blood white count was high and later that night my parents brought me to the ER. The ER doc said because of my history and based on my blood counts it’s better to transport me to the oncology floor. We asked if his cancer was back, the doctor didn’t think so. But when we were in the oncology floor they were all talking as if my cancer was back and we were surprised when they said it’s confirmed it’s back.
The plan was not to use my brother for a second bone marrow transplant. We had to look for an unrelated donor. It took a while to find out I had four perfectly matched donors. But later told us they couldn’t locate three of them so it’ll be up to the one person now. But we were so fortunate the sole donor was very cooperative and will do anything for me. They didn’t tell us who the donor was but during my transplant, it was revealed that the donor was and from Germany. I was at the hospital for a month and went home.
I’d like to say life was back to normal but I had complications after complications. The one good thing is a couple of years later, I found out who my donor was and my brother met her and her family in Germany. Anyway, back to my condition, I developed a lung GVHD that breathing was hard. I would be out of breath just walking up the stairs. They gave me high doses of intravenous steroids for months and on a normal visit to the hospital, my blood work showed the cancer was back again for the third time.
This time though, talks with our medical team were not promising. They told us a bone marrow transplant wasn’t possible anymore. They could look for clinical trials or give me pain meds just to keep me comfortable until I wait for my death. I may not be able to qualify for CAR T-cell therapy because I have an active GVHD and on my first l relapse my cancer contained AML. They also had to test that my cells should contain all CD-19 proteins. But for unexplained reasons, the AML was no longer showing in my cancer, my GVHD was gone and also my proteins were all CD-19. So, I qualified for CAR T-cell and in September 2014, they reinfused my re-engineered cells back to my body.
For months my counts didn’t come back. I had zero immunity. The only way to get it back to normal is for my donor to donate her cells again. She was kind enough to do it again and three weeks after reinfusing her cells on me, I got better. It’s been two years since, and I have gone back to school although I’ve done mostly virtual. If you ask how everything impacted us, besides medically, we definitely went through a lot of mental and emotional issues. Taking care of your mental health is very crucial during this whole process. I am now a junior in gushy school and doing well.
Jude
Acute lymphoblastic leukemia (ALL)
