The view of blood leaking from your sleeping child’s mouth first thing in the morning is never a pretty sight. “Oh it must be something going on with those new teeth finally trying to come in” is what I thought. However; after day two, then day three of increasing pooling blood in the mouth I knew it was time for the emergency room. It was while making an emergency appointment with the orthodontist did the ER physician say “oh we’re transferring her to the local children’s hospital…we’re on the phone with the hemotology/oncology division now”. Hemotology?? ONCOLOGY?????? That was the day our lives changed.
That way May 2, 2019. Little did I know that would be the last day I’d sleep in my own home for at least 4 months. Myelodysplastic Syndrome. Also known as Aplastic Anemia. Also known as Refractory Cytopenia of Childhood. A rare condition where your bone marrow stops making red and white blood cells, or platelets (thus the non-stop bleeding gums). The “cancer” that’s not technically cancer. But it might-as-well be. My baby needed bone marrow. No hemoglobin and no platelets mean transfusion after transfusion. Can’t even count how many there were. Seems like every three to four days until the transplant. Who would be the donor? Who’s a good enough match?
After more than a month of waiting and testing mom, dad, and big sis… turns out mommy to the rescue. My pleasure. Let’s get it! New York Blood Center here I come. Twice! After about 9 hours total of collection (within two visits), with IV’s in each arm, they finally had the bone marrow HCT needed to transfuse Ashanti. And that was the easy part. The eight days of heavy-duty chemotherapy hit like a mac truck on her 11 year old little body. The fallout wasn’t pretty; but her patience, grace, and humility were more than I could hope for. I noticed she kept looking for my reaction and checking for frustration as I awakened multiple times a night to assist her to the bathroom, change her soiled sheets, or grab the bucket to catch throw up. I watched her as she looked to notice any frustration in my face or body movement. Of course there was none. “Sorry for interrupting your sleep” she said one night. “Are you crazy??? I’m here for YOU!”.
On another occasion as I held her up from the bathroom to the bed she says in a soft sweet voice “whoo.. I didn’t know it was going to be so rough” “thank you for helping me through this”. This kid. Who IS she? Ashanti Nairobi Steele. That’s who she is. And she’s all mine. The transplant was a success but there was some really scary aftermath. We have a long road to recovery. Weekly outpatient visits, meds to be taken up to a year and she won’t be starting school on time as her immune system takes time to mature. But I completely trust God. She will be phenomenal because of it. She’s definitely are warrior. Just as her name indicates! Her strength is what keeps ME strong. It makes my heart cave in. Her poise and grace throughout this whole process has been something only the Holy Spirit can achieve.
The sound of her continued laughter and sight of her sunny smile is priceless. Her positive outlook on life and her circumstances leaves me at a loss for words. Only God. Help me to assist my “rock-of-Gibraltar-in-human-baby-form”; the (“mayor of the classroom” as her former teacher Ms. Beldo tells it) Ashanti Nairobi Steele in her full recovery and comeback. She will be greater than she was ever before. I’m excited about her future.Treatment and chemo really kicked her butt and issues of skin and liver GVHD almost led us to needing a liver transplant. As the years have gone by we\'re battling some graph-vs-host disease but Not another transplant!!! I pushed back on the doctors and by the grace of The Most High her liver enzymes finally came down to almost normal.
She still has the patches of discoloration on her skin and her weigh and hair are coming back however the frequent respiratory infections and nose bleeds sometimes send me in a panic (oh no not another bleedout). She\'s a survivor you\'ll!!! Yes, she is now her mother\'s clone lol. But God!! And even after losing all her hair, her normal body and skin tone, Ashanti never lost her smile, her joy and her beautiful spirit. She is indeed the strongest woman on earth to me!! BUT, just as she rang that cancer bell and was finished with her treatment, life would put her through more tests, and she unfortunately became the victim of bullying and a senseless criminal stabbing by a fellow high school student at Elmont Memorial High School,over a situation that was not even hers.
Back to the Children\'s Hospital we go. Her Hematology/Oncology team could not believe she was back and for something so heartless. Still in all she remained poised, calm and brave. She\'s braver than her mother. Welp she just came up on her 16th birthday and I tried my best giving her the Winter Wonderland Sweet 16 Party of her dreams. Who knew I\'d lose my job at a research non profit just two month before the time. Loss of job, loss of health insurance has made us temporarily miss check up appoints and literally had me fearing doctors visits during those time of respiriatory infections and nose bleeds.
And here I am now, April 2024, MONTHS behind on rent and potentially facing eviction. What a challenge our lives have been. I\'m reaching out to our networks of support and kind folks like yourselves for help in bringing some balance and normalcy back to our lives as I continue to seek gainful employment. Homelessness just CANNOT be a part of our story after all of this. Please help if you can. No amount is too small. We thank you in advance and my God bless all of us. Thank you for considering a donation. No amount is too small. But even if you can’t donate, please help us by spreading the word across your social media channels using the hashtags #AshantiSteele #aplasticanemia #myelodysplasticsyndrome. God Bless
