Honored Kid

Trevor Kott

Trevor Kott Kid Photo

Location

Cameron Park, CA, US

Diagnosis

Acute myeloid leukemia (AML)

Date of Diagnosis

November 2006

Status

Passed away

Treated At

Kaiser Permanente South Sacramento Medical Center

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My Story

Trevor was born full term on October 14th, 2006 and was given a 9 Apgar score. He was 8 pounds 6 ounces. We were discharged the day after he was born with the hospital giving him a clean bill of health. Just before we were leaving (He was actually in his car seat) a nurse informed us that the little t-shirt the hospital had put on him needed to be returned. While taking it off mom noticed small dots on his arms and asked the nurse if it might be a rash from the sweater he had on over the t-shirt. The nurse practitioner took him away for a closer look under better lighting and ordered a complete blood count (CBC) to get some answers. Turns out he had a white count of over 190,000 and they knew almost instantly it must be leukemia. They told us he had congenital leukemia which is "exceedingly" rare and has a very poor prognosis (less than 5 percent survival rate). They told us he probably only had days or weeks to live. They immediately took him to the NICU and put in a Broviac catheter (central line) and he had two total blood exchanges, medications, etc. Basically the prognosis was so poor they put us in contact with Hospice and sent us home. He developed a fever at home and we took him back to the hospital after only 4 days. At that point we decided to go ahead and treat him because he seemed to want to fight. Then he had a bloody spinal tap and barely came out of the sedation. They sent him home again to die. The next day at home, he was bright-eyed and acting like a normal baby. We just couldn't sit there and let him die without a fight. He seemed to be speaking to us and saying, "I want to LIVE! Trevor did not seem content to live such a short life without a fight, so he was re-admitted to the hospital and began chemotherapy treatments to cure his condition. While the initial treatments achieved a remission, the leukemia cells returned in March. Trevor’s only chance for a cure was to receive a bone marrow transplant. Because Trevor had a very rare tissue type, a donor was not found in the National Marrow Donor Program registry. The spread of Trevor’s story generated a grassroots effort that added thousands of people, each of whom desired to be the match for Trevor or another with a similar need, to the national bone marrow registry. Unfortunately for Trevor, none of the three additional rounds of chemotherapy administered in March and April was able to force the leukemia into remission, and with that his options for a cure came to an end. Angela and Bob Kott

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