Double Deckers Destroy AML

Seth and Joel are identical twins with a very special bond that not even cancer can separate. If you look back at pictures of our life together before cancer, you will notice Seth and Joel are in almost every picture together. They were born together. They slept together. They constantly played together. They ate every meal together. They got into trouble together – whether throwing clean laundry on the floor or climbing something they shouldn’t have been climbing.

Even their medical story started together. Both twins were diagnosed with low platelets in the summer of 2016 a few months before their second birthday. In November of 2016, Seth was hospitalized and later diagnosed with myeloid sarcoma, a rare form of Acute Myeloid Leukemia (AML). That was the first time the brothers had been separated before. Doctors raced to find out what was wrong with both boys and discover what genetic problems might be occurring. Several months later, in March of 2017, a bone marrow biopsy revealed that Joel also had AML (Acute Megakaryocytic Leukemia: AML-M7). Joel’s cancer was in his bone marrow, while Seth’s had actually been in his bones.

A difficult part of our journey has been the constant separation of family. AML requires month-long hospital stays at a time (or longer) because the chemo is so devastating to the body and wipes out immunity, drastically increasing susceptibility to infection. For almost a year, either Seth or Joel was hospitalized most of the time and we only enjoyed a few weeks where everyone was home together. Following Joel’s death, we had several months at home.  When Seth’s treatment resumed, we endured more months of family separation as he went through his second bone marrow transplant and the lengthy recovery. More research could discover new treatments that aren’t so toxic to children and would allow for shorter hospital stays.

We can’t explain how priceless it was to be at home and just watch all three boys play together. Seth and Joel loved playing transformers with their older brother Nathaniel. In our house, anything with wheels was wildly popular. The boys loved Hot Wheels, construction vehicles, fire trucks and trash trucks. The three of them loved to push vehicles around and make loud noises. We ache for the sound of all three boys running and playing together and laughing. They roared and stomped and pretended to be dinosaurs. Reading books together was one of their favorite things. They also loved Play-doh and creating things. Before cancer, the three were totally contented to play in the dirt outside in the backyard or run around playing in the sprinkler.

So much more research is needed for AML, especially in the relapsed setting. Joel’s relapse occurred in August 2017, less than 2 months after his bone marrow transplant. He was only able to try one round of experimental chemo before the cancer took over his body. While Seth survived much longer, he endured many complications. His first bone marrow transplant was unsuccessful. After months of weekly transfusions due to bone marrow failure, Seth’s only option to get a second bone marrow transplant. Seth suffered significantly from graft-versus-host disease caused by the second bone marrow transplant and spent six months in the hospital until his cancer relapsed. Surrounded by their loving family Joel passed on November 1, 2017 and Seth passed on May 10, 2019.  Both boys left this earth for a much better home in heaven.  

Please support Seth, Joel, and St. Baldrick’s so that other families don’t have to say goodbye too soon.