Ella’s parents, Christina and Joe, remember the morning their cancer experience started – they woke up to four missed phone calls from their daughter’s pediatrician.
The day before, they’d taken 1-year-old Ella to the doctor for an ear infection, which wasn’t uncommon – but since Ella had looked a little pale lately, they also asked doctors to run a blood test to make sure everything was okay. The pediatrician had run the tests and found that Ella’s white blood cell counts were off the charts. They were calling with the news that this was a clear indication of leukemia.
Her parents were in shock. They rushed to the hospital for bone marrow biopsy and central line placement. Christina remembers Ella’s surgeon taking her aside and reassuring her that leukemia is the most treatable form of childhood cancer. But less than 24 hours later, the news went from bad to worse – her official diagnosis was AML M7, a particularly deadly and hard-to-treat type of leukemia. It would require a stem cell transplant from a donor and likely 6 months to a year in the hospital – and even then, the prognosis was still poor.
“I find myself envying everyone else on the hospital floor because it’s likely their cancers are more treatable than Ella’s. What kind of twisted thought is that?” Christina wrote on Ella’s CaringBridge page not long after diagnosis.
You can help Ella fight this rare leukemia - visit our special Race Against Rare Leukemia page to learn more.
Ella’s Treatment – By the Numbers
Ella’s intense treatment required her to spend the next 8 months in the hospital – during that time her family only spent 14 days together at home.
Ella celebrates her third birthday
Because her treatments were designed to wipe out her immune system, Ella caught several infections while she was in the hospital – each requiring a 14-day course of antibiotics.
She turned 2 years old in the middle of her treatment. Her parents say they are looking forward with hope and trepidation towards her 6th birthday – that will be the day that Ella is officially declared “cured” if her treatments succeed at killing every last leukemia cell in her little body.
But Ella’s family celebrates a new “birthday” for her now – on February 18, 2020, her family celebrated her “rebirthday,” the day she received a stem cell transplant from a 20-year-old donor. This past February, they celebrated the one-year anniversary of this milestone – a day Christina says there was only a 10% percent chance she would make it to.
Stem cell transplant is always a long and scary process, but Ella had it particularly rough. Her immune system was completely wiped out, which opened her up to infection, rashes, and the dreaded graft-versus-host disease, where the body perceives donor stem cells as foreign and attacks them. She spent 102 days post transplant in the hospital before finally being discharged. Her parents have cherished every day since, constantly surprised by both Ella’s strength and their own.
“Every night when I put her to bed, I whisper in her ear 'you're so strong. You've got magic in your body. You are going to live a long, happy, healthy life' again and again,” Christina said. “Each night she takes my face in her hands and nuzzles me, putting her ear to my face while I whisper.”
Read more: How to Be the Friend a Cancer Family Needs
Ella’s Spirit
Despite spending so much of her young life in the hospital, Ella still flashes her winning smile to doctors and nurses when she’s feeling well enough. She toughs it out through needle pokes, icky-tasting medications, and even scary procedures like lumbar punctures.
Meet Dr. Soheil Meshinchi, the doctor opening a clinical trial that could save Ella's life.
“Ella will say 'ouch, back' after biopsies and then continue to play as before. She's a freaking powerhouse!” Christina said.
Her tough spirit keeps her parents hopeful that next week, next month, next Christmas, next birthday will be better. She loves to make her two older siblings laugh with her silly facial expressions, and her mom says she rides her tricycle like it’s a motorcycle. She loves to dance, chase balloons and pop bubbles. She turned three years old in August 2021, having spent the overwhelming majority of her life in cancer treatment. Her personality shines through the most when she wiggles her eyebrows, which is so cute it even gets her out of trouble in squabbles with her siblings. Once when she accidentally bopped her sister Lily in the head with a bath toy, her mom told her to apologize.
“Instead, she gave Lily the side eye, rolled her eyes dramatically, and then moved her eyebrows up and down until she got me laughing,” Christina wrote. “She did end up apologizing, but I might have lost some of my disciplinary authority by laughing hysterically while she said sorry.”
Facing Fear and Taking Action
Christina and Joe have learned more than they ever wanted to know about AML, and the more they learn, the more fearful they become. They know the science hasn’t caught up to their daughter’s type of cancer, and without better treatments, the cards are stacked against her. But they’ve turned that fear into action, raising funds for researchers who are working on safer, more effective treatments for high risk AML right now. The goal of this research is to prevent relapse and reduce side-effects.
Only one researcher in the country is researching Ella's specific type of cancer - learn how we're teaming up with him to bring a new treatment to clinical trial.
They’ve seen stem cell transplant bring their daughter to the brink of death and back, and they know she’ll deal with late-effects from treatment and complications of treatments for the rest of her life. But they’ve also seen the power of their daughter’s story, and the community that has rallied around them to make a better future for Ella possible.
“Ella continues to get stronger every day,” Christina said. “She had another bone marrow aspirate a month ago, and the results were clear. Now, we party as hard as possible for the next six months until the next one! But we're confident she will continue to battle, and we are so thankful for her superpower donor cells. Knowing research is being done to address and cure high risk AML literally helps us sleep at night. We are hopeful, grateful, and will hold our breath for the next 3.5 years to come.”
Donate now to help Ella win the Race Against Rare Leukemia.
Children's Cancer Research Fund is working with Dr. Soheil Meshinchi, a the only researcher studying Ella's type of cancer, on a special project called the Race Against Rare Leukemia. Dr. Meshinchi has already completed the most critical part of his research. All he needs now is enough funding to get a lifesaving treatment into a clinical trial for kids like Ella. With your help, he can get this trial started this year.
