Khayya and Khaleb Ragland
“Not sure if Jabrele told you the type of disorder (disease, cancer) my son Khaleb (Caleb) had but it was hemophagocytic lymphohisticystosis better known as H.L.H. It is a very rare form of leukemia that manifests as a fever, jaudice, rash, etc and abnormal liver enzymes are frequently present.
When he was 8 weeks old he was diagnosed with H.L.H. He spent 3 days in daycare at 7 weeks old. His teacher called said he had a high fever of 103. I immediately took him to the hospital. We spent 48 hours there and then was released. They said it was just a virus. I felt that something wasn’t right because while in his sleep he would cry a cry of pain. For 2 days I could not break his fever of 103. I went back to the hospital demanding answers. They check his blood and his platelets were so low he had to have a blood transfusion that day.
He was committed to the hospital and the next day the blood doctors said he had 6 of 8 of the symptoms of H.L.H and they had to start chemo immediately. I was in shock. I was crying so much I couldn’t sign the consent papers until after I left out to pray… So, after a lot of prayer and having peace about the situation, we began chemotherapy. We were inpatient for 14 days. My family and hospital staff was saying that Khaleb’s hair was going to fall out. I would not allow myself to believe that. Within those 14 days of chemo his hair did not fall out. We were released from the hospital but returned every Monday, Wednesday, and Friday. Wednesday was Chemo day.
I remember those long, long hours of that process. Khaleb attracted so much attention. People could not believe that he was so cute and so well behaved. For most, he was the youngest child to go through chemo. Fridays were Lumbar Punctions when they draw marrow to see if the chemo was working and it was. On one particular Wednesday his case manager told me that we had to go to Cincinnati Children’s to have a bone marrow transplant. That although they specialized in various procedures at Arkansas’s Childrens they did not do bone marrow transplants. We had to go to Ohio and I only had a week and 5 days before we would leave.
After arriving in Cincinnati we stayed in Ronald McDonald for several weeks while they did pre transplant work ups to make sure his organs were strong enough for the transplant. Khaleb was admitted into the hospital for 36 days which was so hard because he was on 14 different medications and the doctor wanted to do a feeding tube which I would not consent to because in my spirit I felt that it was unnecessary and because he was still eating and drinking his bottle on his own and the procedure would cause infection which I wanted to avoid.
Ultimately, at 5 months my baby boy had his transplant from a perfect donor that was found only several weeks before the scheduled transplant. We had to go to the hospital after discharged twice a week then progressed to once a week, once every other week, once a month to know once every four months. My son is now two years old, not on any medication, and had one of the most successful transplants ever. He is truly my miracle baby.
This is our story in a nutshell…”