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A Monetary and Resource Fund for Eight-Year-Old Zyan's Third Battle Against Leukemia

Seventeen months, four years, and 8 years... These are the ages of a little girl when she was diagnosed and re-diagnosed with ALL, Acute Lymphoblastic Leukemia. With each episode, this little girl has had the strength of a lion, the spirit of an angel, and the wisdom of a person ten times her age.

She has walked a journey many of us couldn't imagine.

Needles, surgeries, inpatient admission, infections, medicines, medicines, more medicines, nurses, doctors, social workers, infusions, allergic reactions, sores, burns, rashes, scars, baldness, learning delays, PICU, vomiting, nausea, diabetes, failure to thrive, TBI, CT, X-Ray, PET scan, Ultrasound, round map, Emergency Room, neutropenia, CBC, hemoglobin, platelets, ANC, WBCs, RBCs, chemistries, pancreatic enzymes, LFTs, chemotherapy, bone marrow transplant, graph vs. host disease, DNA, prognosis, salvage, death, recovery, cell harvest, ... relapse.

How many of these words/terms do you have to look up? Ask a friend for clarification? Cringe when you hear your voice say it? How many of you have lived with these words/terms as your everyday, non-professional vocabulary?

Like I said before, this lived girl has walked a journey that many of us couldn't begin to imagine. As her mother, as the person that has been in the hospitals, clinics, bed, toilets, bath tubs, clinics, new cities, couches, and stretchers it is still difficult for me to put myself in the shoes of the bravest, most resilient, brightest, and most exuberant little girls that I have ever met in my life. Of course a mother should say such things about her child, but if you know this little girl, you would know that there is more truth that bias to my proclamation.

Ms. Zyan (rhymes with Ryan) Ashanti Ogiste-Hayes, is currently battling Leukemia for the third time in just eight years. We discovered her second relapse a few Saturdays ago on 9/12/15 when she complained of a stomach pain that felt like "something sitting" in her stomach. Considering that she complained of something "pinching" her in her stomach in March of 2011, I knew that despite a very successful bone marrow transplant and subsequent healthy check-ups that my baby was about to gear up for another battle with the stubborn, persistent disease that has consumed her life.

God has blessed this child with life for eight years. For the past eight years He has also blessed me, her sisters, grandmothers, family, friends, teachers, nurses, and doctors with a zealously alive, constant ray of sunshine. Through her smiles, positive attitude, and age-defying strength, He has allowed us to see the true meaning and value of time, persistence, family, purpose, and relevancy. These lessons that we've learned through Zyan are once again at the forefront of our minds as we support her through the next steps of this journey.

At the end of the year, Zyan will be going to the Children's Hospital of Philadelphia to participate in a breakthrough study for her treatment. The study is called CART-19. In short, her T-cells (already harvested in Dallas a couple of weeks ago) will be engineered to recognize the protein that sits on top of the Leukemia cells in her body. By recognizing the cell as one that is foreign and definitely not welcome, the engineered T-cells will attack the Leukemia cells, thus preventing them from living and taking over her body. (This is very similar to how our body attacks the flu.) While we wait for the next step of the CART-19 study, Zyan is being treated by her Oncologist at the Dell Children's Hospital and Specially for Children's Clinic in Austin, Texas. On the first she began an induction like regimen. Due to the high levels of toxic drugs and therapies she received at such a young age, we have decided to be conservative with this regimen, choosing less drugs with less toxicity to help bridge her to Philadelphia without the spreading and/or complications of the current disease.

Until Philly, we are taking advantage of our time together and praying that we continue to have the blessing of time together for years to come. We are also making plans for travel back and forth to the Northeast, lodging (we will initially be there for 5-6 weeks), time away from work, medical expenses, bucket list experiences (as we believe that it is while one is full of life is the best time to delve into these priceless endeavors), her new foundation, and other reoccurring expenses that will accrue over the next twelve to twenty-four months. We greatly appreciate any and all donations that will help us keep Ms. Zyan's quality of life and life experiences as normal, comfortable, and smile-producing as possible. And regardless of your choice, please stay tuned for more information about childhood cancers, current research, Zyan's upcoming foundation, and her experiences with the third round of Leukemia.

Welcome to her story. 
Welcome to our story.

Love, Zyan, Mom, and sisters.

 

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