November is National Marrow Awareness Month. This special edition of Warrior Wednesday, we want to share a story of Chloe Bella and her mom Nayara.
Did you know there is a cure for blood cancer, but not everyone has an equal chance of finding a life-saving match?
Bellas has Juvenile Myelomonocytic Leukemia (JMML), which is a really rare type of leukemia. It's like 1 in a million. A Bone Marrow Donor can save Bella, and that is her only chance to fight. But like Bella, there are many other patients still waiting for their match.
Bella's personal experience as a pediatric oncologist patient has motivated her mom to raise awareness to diversify the Bone Marrow registry.
My name is Nayara. I am a mom to Chloe Bella and Kyle. Bella is a smart, easy-going, and fun-loving kid who loves to play with dolls and her brother Kyle. She showed no signs of illness until about a month before her 4th birthday when we noticed a few “small” things as well as a hard ”mass” on her belly that turned out it was her spleen 3cm larger than usual.
On September 10th, 2019, Bella was diagnosed with Leukemia, and on the 14th, we found out it was juvenile myelomonocytic leukemia (JMML), which is an aggressive form of leukemia. That day has changed our lives forever. Her doctors say approximately one in every million children is diagnosed with JMML, and stem cell (bone marrow) transplant is her only possible cure.
What was the hardest part of Bella's medical journey that you had to overcome?
Bella went from being a playful child to a pediatric oncologist patient. She just started school a few weeks before her diagnosis, and she had to miss school because of hospitalization. While her classmates are spending time in school, Bella spent 68 days in the hospital room, has undergone three bone marrow biopsies, one Lumbar Puncture, and surgery to place a double Broviac line for her intensive course of chemotherapy.
Bella was only three years and 11 months old when she got diagnosed. She celebrated her 4th birthday in the hospital. Like all parents, we want to watch her grow and celebrate every birthday with her. We want to see her dancing ballet and walk her down the aisle when she gets married. When Kyle (Bella’s older brother) asked me, “Mommy, will Bella be okay ?”. I had to tell him that “Mommy doesn’t know yet!” and it shattered my heart.
For me, it wasn’t hard to sleep every night in the hospital or take care of Bella while she is fighting leukemia. The hard part was that I also had to leave my son at home and miss almost two months of his life.
Bella has gone through 2 cycles of chemo already, and thankfully, she made it with almost no side effects. The hardest part about this healing journey has been the uncertainty since no one knows what will happen next, but we are committed to giving cancer the greatest fight possible.
It's the unknown that is very scary, and Bella’s life is in the hands of a donor that we hope is not going to say,” You know what, I changed my mind.”
How do you live beyond this journey? What motivates you to live beyond it?
Bella was diagnosed on September 10th, 2019, and that date has changed our lives forever. I remember crying and having my husband come in just like, hold on, wait, let's wait. You know, let's have faith.
And I do have faith.
Only one in every million children is diagnosed with JMML. The only known successful treatment is bone marrow transplantation (hematopoietic stem cell transplantation).
Since Bella is Brazilian, it is even more challenging to find her donor, who shares her similar genetic ancestry for the transplant to work. Less than 7 percent of the Bone Marrow registry is made up of Latino donors.
Bella’s life is in the hands of strangers as she desperately waits for a blood stem cell transplant, and she never lost her hope.
No matter what life throws at her, she always has the happiest smile, and her personality lights up the hallways of the pediatric oncology floor. Bella motivates us to look on the bright side and to have faith in a miracle.
Because of her, we reached out to everyone in our community to spread the word about the bone marrow registry. Our family is now on a mission to raise awareness to diversify the Bone Marrow registry.
What would you say to other families who are walking through similar medical journeys?
There are harsh realities to all cancer — and with pediatric cancer, it is grossly underfunded. The little voices are often overlooked. Cancer doesn’t just affect the child but also the family.
To all the parents, please don’t be afraid to accept help when you need it. Fighting cancer is a long and tough battle, but you don’t have to do it alone. Our family cannot do it without the help of our community, family, and friends.
As a community, how can we help?
Bellas has Juvenile Myelomonocytic Leukemia (JMML), which is a really rare type of leukemia. It's like 1 in a million. We are incredibly grateful to find her match. Our Bone Marrow Donor can save Bella, and that is her only chance to fight. But like Bella, there are many other patients still waiting for their match
The first step is to registering and doing the little cheek swab. And then, stick with your commitment, because you can save someone's life. Just like someone else has saved my Bella
For every follower, who joins the Bone Marrow Registry, Code Blue Jewelry will donate $10 to the Be The Match registry on your behalf.
To join the registry and possibly save the life of other patients like Bella, you can visit:
Once you have registered, please send us a direct message, we will send you $50 store credit for your support!