Our son Dominic was diagnosed with MLL-rearranged acute myeloid leukemia (AML) on July 14, 2020. The mixed-lineage leukemia (MLL) gene rearrangement in AML is considered a high-risk feature, and treatment typically involves high-dose chemotherapy to induce remission followed by bone marrow transplantation. The MLL-rearrangement is also called the KMT2A-rearrangement or 11q23 rearrangement. Dominic had a translocation between chromosomes 6 and 11, t (6;11). Our son never made it to transplant, he was only able to fight for four months and died on November 14, just after his second birthday on November 4.
Dominic had a good response to the first course of chemotherapy and was in remission. However, he relapsed after the second course of chemotherapy. He started to develop hardening spots on his face, that the doctors explained were pooling of leukemia. Dominic couldn’t tell us much since he was only two years old, but I have to assume that it was very painful. The first developed next to his right eye and eventually took over his entire right eye and bled. The other on the left side of his nose and it was hard as a rock and puffed out where his little nose met his cheek.
Dominic also developed what the doctors called leukemia mouth, where his gums took over his teeth, and inside his mouth was just raw and bloody. We could no longer even brush his teeth because the pain was so intense.
The plan had been to transplant him if he remained in remission after the second course. His cancer came back with vengeance, but ultimately the intense chemotherapy is what took his life.
In the last effort to try and save our son’s life, our oncologist offered some newer classes of drugs that had shown some efficacy in AML adult patients since barely any new drugs have been produced specifically for babies and children with AML. In his last admittance to the hospital, Dominic was given three different courses of chemotherapy treatment first combination was decitabine and mylotarg. We were told they were very experimental drugs, that had only shown some positive responses in kids.
Dominic ultimately died of a brain bleed caused by the intense chemotherapy he was given. These treatments are a death sentence for kids, we need more targeted treatments that are specifically made for children. The trickle-down effect being used today simply doesn’t work for most kids! We need to do better!
Dominic had his whole life ahead of him, he was strong and brave! He fought hard for his life. He loved like no one I’ve ever met! He loved his kitties, which he didn’t even get to see in the last days of his life since he needed high levels of oxygen (we had to stay in the PICU at the Hospital). He loved to dance and play outside. His personality was out of this world huge!
There should be better advancements for our kids, Dominic deserved better and so do all the rest of these kids fighting cancer!