My son was diagnosed with a sinus infection, what came next still haunts me
A mother's instinct cannot be denied, and I am so glad I trusted mine when my son, Jayvion, became ill.
It was early August, and my wonderful 12-year-old son started complaining about these painful sores in his mouth. As the days went by, the sores did not improve, and Jayvion also developed a sore throat, a fever and swollen gums.
Given his symptoms, I presumed it was strep throat, or maybe a gum infection at most.
But the thing is, his condition just got worse over the following days. By August 5, when it was clear that he still wasn't getting any better, I took Jayvion to the dentist for reassurance. Following a brief assessment, the dentist prescribed him some antiviral medication and mouthwash containing lidocaine to ease the pain.
Yet even with the prescription medication, Jayvion was in a lot of pain, and he was struggling to swallow. I couldn't shake the feeling that this was more than we were being led to believe, and I hated seeing him suffer. So, the following day, we made our way to urgent care.
From left: Jayvion, 12, standing outside, and in a swimming pool.
There, doctors performed a test for strep throat , and it came back negative, so we were sent home with medication to treat a sinus infection. Still, something felt off about it.
Jayvion took the medication he was given at urgent care, but hours went by, and he didn't see any improvement or pain relief. Knowing that he needed more testing, I drove us to another hospital because I couldn't sit by and watch my son get worse. By this time, Jayvion could no longer swallow, so doctors ran tests for strep and mono, both of which came back negative.
At that point, they did not think of running a complete blood count, and they just sent us home with the exact same medication Jayvion was given at the dentist's office.
It was infuriating to see my son struggling so significantly, and yet no one was listening to us.
'Could Not Believe What I Was Hearing'
By August 9, Jayvion had been exhibiting symptoms for over a week and showed no signs of getting better. When I got home from work, I saw how sick he looked and knew the medication was insufficient to treat whatever he was going through.
So that night, we went to another hospital desperately seeking answers. I wondered if the strep test at the previous hospital had been a false negative, so they did another swab, and this time, it was positive.
Most importantly, doctors ran a complete blood count and realized something far more shocking. Jayvion's red and white blood cell counts were extremely low, and his platelets and hemoglobin levels were much lower than they should have been.
Those results were far more concerning, so Jayvion was admitted that night for further assessments, including a bone marrow biopsy.
Jayvion lying in a hospital bed after being admitted.
Waking up in hospital the next morning was a horrible experience, but I never could have predicted what we were about to hear. After initially going in for a sore throat, doctors gave me the heartbreaking news that my son, Jayvion, has acute myeloid leukemia.
Almost immediately, he was flown to a specialist children's hospital in Fort Worth to begin treatment. Everything happened so fast, I could hardly believe what I was hearing. I felt weak and almost passed out after hearing the word "leukemia." I instantly felt fearful, not only for his life, but for mine because he is my entire life. Without him, I don't know who I am.
'Nightmare to See the Fear in His Eyes'
Jayvion has already completed one full round of chemotherapy and is currently trying to get his numbers back before doing another bone marrow biopsy. Overall, he has his good and bad moments.
The treatment left him feeling tired , nauseous and weak, and he is still unable to swallow because the sores have spread so far down his throat. As a result, he will take part in a swallow study to see if anything can be done to help him eat and drink.
We have to wait a few weeks before the next biopsy can be done, so in the meantime, we are just trying to prevent infection as his immune system is so depleted from the chemotherapy. Jayvion also had a spinal tap to look for a specific gene that would qualify him for a clinical trial, but as he does not have that gene, he will just be receiving standard care instead.
Left: Nicole Casel with Jayvion and his sister, Lily. Right: Jayvion and Lily.
He understands that he has cancer, and it has been an absolute nightmare to see the fear in his eyes. What makes it worse is that I can do nothing except let the doctors and nurses do what they do best. I have to trust them wholeheartedly, leaving me utterly helpless and terrified.
I can't help but grieve the life we had before and grieve the boy Jayvion was prior to this cancer diagnosis. He always loved to play soccer and Fortnite and was preparing to start seventh grade this fall. Now, instead of a classroom, he spends most of his time in a hospital room.
Nonetheless, my son is a fighter. Kids are so much stronger than we think and give them credit for, but they do not deserve to fight such terrible illnesses.
For several days, my concerns were ignored at the urgent care and the emergency room. Jayvion's symptoms were not taken seriously until he finally underwent a complete blood count. I urge other parents to advocate for their children and to keep fighting for answers when something does not feel right.
Parents have a gut instinct, and they should always listen to it.
Nicole Casel, 33, from Amarillo, Texas, has been documenting her son's cancer diagnosis on social media ( @lilynjayveesmama on TikTok) and has also set up a GoFundMe for his ongoing chemotherapy treatment.
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