Myra was born 13 minutes after her twin brother Collin on December 9, 2017. She was the calm to his storm. She was patient, loving, easy to soothe, and loved to be held or to play equally. She was my dreamy, easy baby.
She was the healthiest baby and never caught a cold or even had a runny nose, despite being born at the height of flu season and coming home to a two-and-a-half year old sister who had a bronchial infection. So when Myra began to get a bit pale, slowed down her eating, and started sleeping a little more around mid-August of 2018, we watched and monitored until additional symptoms soon became apparent. Perplexed, we took Myra to her pediatrician for a checkup, only to be sent immediately to Children's Hospital Plano for blood work. We didn't even make it home that afternoon before receiving the phone call from our pediatrician that we never would have expected: "Go straight home, pack a bag, and head straight to Children's Dallas. Her blood work looked concerning, so they need to check it again. Don't panic, just hurry."
That night, August 27, 2018, our formerly perfectly healthy baby was diagnosed with leukemia. A central line was immediately placed into the large artery in her groin area, and a physician, for more than eight hours, manually extracted Myra's blood from her body every 15 minutes, one 40mL syringe at a time while new blood was continuously transfused into the IV in her hand.
A few days later all the detailed reports came back, and we learned she had Multi-phenotype Acute Infant Leukemia with a rearranged MLL gene. Each of these components on its own is horrifying, but we have come to learn that, lumped together, this diagnosis does not fall into the "85% cure-rate leukemia" category. Multi-phenotype means she had both ALL (acute lymphoblastic leukemia) and AML (acute myeloid leukemia). Her blood work showed more ALL than AML, but there still is no set protocol to follow for treatment. The amazing oncologists at Children's put together a plan for her based on recent research from the Children's Oncology Group (COG), and Myra went into remission after the first month of treatment.
Myra went through all the unknowns and frightening side-effects of chemotherapy, frequent blood and platelet transfusions, and took many prophylactic medications to counteract the effects of the chemo. She took more medication in the first week of treatment than I've taken in my life, and the image of my eight-month-old baby being so sick and hooked up to so many machines and tubes is permanently burned into my mind. She did as well as can be expected during her front-line treatment, and moved into maintenance treatment in May 2019, which involved daily oral chemo and a few more spinal injections of chemo for the next 15 months. Seven weeks into maintenance, we learned Myra had relapsed, this time with more AML present than ALL. Her leukemia didn't respond to the first month of relapse treatment, thus labeling her disease as refractory.
We fought for her, and her doctors sought out every possible treatment available for the next four months, but at the end of October, we ran out of curative options and brought our beautiful Myra Joy home on hospice care so she could live her remaining few days with her twin brother, big sister, mom, and dad all right by her side. She died on November, 16, 2019, three weeks shy of her second birthday. Unlike many children, the chemo did not kill Myra - she had no organ or brain damage or even developmental delays from treatment. She died from her cancer and because there is a lack of funding to research cures for rare cancers, especially those that effect children. We will celebrate her life and the love she gave us by building a legacy of support and fundraising for pediatric cancer research, and we will not rest until children with her diagnosis have a better chance at survival and living more life than what Myra got.
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A letter from Myra’s Mom
“One year ago this week, we had finally brought Myra home after a four-months-straight inpatient stay to try to control her leukemia. We learned on November 1, 2019 that we were out of options to get her back into remission following her relapse in July and that she would not be eligible for a bone marrow transplant. She was home on hospice — not the jubilant trip home we had so long hoped for.
Myra was diagnosed in August 2018 with Infant Leukemia, specifically Mixed Phenotype Acute Leukemia with rearranged MLL gene. She was almost nine months old, and our world was flipped upside down. She went into remission after the induction period and tolerated her treatments fairly well, only ending up in ICU three times during her 15 month fight. We thought we were the lucky ones.
We lost her on November 16, 2019 after throwing our “Hail Mary” pass: infusing pre-trial donor T cells flown in from France with a special blessing from the FDA since it was the only option left to try. Myra’s doctors did everything possible and looked under every rock.
One of Myra’s oncologists, Dr. Sam John, has been diligently researching infant leukemia for several years and has now landed upon a T cell immunotherapy treatment option that could target the MLL gene and help control it in an attempt to help patients with this mutation live longer, live better, get into remission, go to transplant, be cured. But first it has to get approved by the FDA and go into the trial phase.
We have committed to help Dr. John and his research team achieve this goal by gifting them the donations we receive at Children’s Cancer Fund in Myra’s memory. This treatment is ground breaking: it has the potential to take away the need for long-term harsh chemotherapy drugs and their side effects as relapsed patients work towards remission and survival. And it has the potential to save more children like Myra who have a complicated and under-researched cancer.
Myra was part of a pair with her twin brother Collin and was the beloved and much wanted little sister of Norah. Please consider giving to Children’s Cancer Fund as we raise money specifically for this treatment option over the next two years so that more families don’t have to know the devastating loss that Norah, Collin, Kenneth, and I have had to experience first-hand. Please consider contributing to something that has the potential to decrease the pain and suffering of childhood cancer patients as they endure years-long treatment.”
- Leigh Deal