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Kiilliu Ford Jr.

  • Non-Hodgkin Lymphoma

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On September 15, 2011 my then seven-year-old nephew Kiilliu (pronounced Key-Lou), was having a hard time breathing and had a cough that rattled my bones. Watching him fight for every breath was one of the hardest things I have ever done. He was taken to the pediatrician after several nebulizer treatments and he just wasn’t turning a corner, so he was sent to the ER at Denver’s Children’s Hospital. X-rays were taken and there was a cloud that could be seen over his left lung. We thought it was pneumonia for sure, send him home with a prescription and a nebulizer treatment and all will be well. WRONG! It was the two words no family ever wants to hear, especially in a kid with so much life left still to live: IT'S CANCER!
There was a 16 cm mass that had collapsed his left lung and shifted his trachea and heart to the right: Lymphoblastic T-cell Lymphoma. He would be facing chemotherapy for the next three years. The doctors at the time had so much hope for him and a game plan to getting him into remission. After just three months he was considered to be in remission just as the doctors had planned. Kiilliu got to spend his eighth birthday in Disney World, thanks to the Make-A-Wish Foundation that granted him his wish. When he came back from Disney World he had the same cough and we knew something wasn’t right. He was taken to the hospital and given an x-ray. The mass was back and this time it had grown to the right side. The doctors tried a different regimen of chemo this time, a stronger dose for sure would get rid of this monster mass that has made itself comfortable in my nephew’s chest. There was improvement and more shrinkage with the new chemo. Again it was only for a little time.

After a year the doctors were beginning to lose hope, because so many different types of chemo were being tried with an effect for only a certain amount of time. They decided they would try radiation in order to get the mass controlled enough for Kiilliu to make it for a bone marrow transplant. A routine MRI showed the mass had moved into his stomach and a routine blood draw revealed it was now in his marrow too. Not only was Kiilliu fighting lymphoma but leukemia as well. Kiilliu was in the hospital three months straight after he was admitted that day in June after returning from Disney World. He fought off a blood infection, c-diff (an infection in your gut from hands not being cleaned after passing a stool), and pancreatitis. I did visit my nephew, but to watch him waste away slowly was the hardest thing I’ve ever had to do in my life. His belly was so distended he looked like a kid you see in the “feed the children” commercials.

As he days grew numbered and Kiilliu started to grow weaker and weaker, his body began to shut down, and he no longer talked because it hurt to do so. He made one last request that he get to go home. My sister was able to make this possible with Hospice. Kiillliu got to return to his house on September 22, 2012 for just a few hours on a respirator. I visited him and held his hand, we listened to "The Lazy Song" and "Toes" and I told him he was such a brave kid and that I loved him. After about 8 hours of being home the machine he was on went crazy and he was rushed by an ambulance back to the hospital. They tried and tried but the mass had grown too big and taken over his little body and compressed his heart so much until it could beat no longer. Kiilliu died September 22, 2012 at 7:30pm. He was so brave and fought for 1 year and six days.
Written by Patrice Sterling, Kiilliu’s Aunt
April 2014

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