Evan was diagnosed with Acute Myeloid Leukemia (AML) on April 22, 2012 at the age of four. After a week of cold symptoms, fever and finally unable to walk on his legs, we had received the reality the no parent should ever have to hear...your son has cancer. At that moment, our life's changed forever.
Evan started four very intense rounds of chemotherapy immediately. After the first month, he was in remission and walking again! We thought everything was going so well. After testing Evan's AML thoroughly, the doctors explained that Evan had a type of AML that was never seen or documented prior; a 3 chromosome translocation (2, 10 and 11). They discussed the possibility of a bone marrow transplant and immediately started looking for a match.
Evan's biological brother, Zach, was not a match nor did Evan have a match worldwide. But Evan was improving and no signs of the Leukemia were returning. On August 4, 2012, chemo had stopped. We decided not to pursue a transplant at that time. Evan was a survivor and doing so well!
After 5 months of remission, on January 4, 2013, we took Evan back to the oncologist and found out that he had relapsed in the testicles at the age of five. We immediately started isolated radiation to that area. After a week of treatment, the Leukemia had spread to his bone marrow. Now it was considered a full relapse and Evan would have to have a bone marrow transplant.
We immediately relocated to Philadelphia to see specialists. Upon arrival and about to commence chemo again, Evan lost his vision in his right eye due to the Leukemia attacking the optical nerve. This has never been seen before; Leukemia causing a stroke of the eye. At this point, CHOP started emergent radiation to his eye. After 12 intense sessions of radiation, the tumor seemed to be shrinking but the eye sight did not return. It seemed so many odds were against little Evan and the unexplainable were continuing to happen. Why???
Again we started chemotherapy and it seemed to be working until the bone marrow and blood test results were coming back. Then a large Leukemic mass formed in his abdomen wrapping around the kidney by the aorta. After 3 months of chemo, the Leukemia was not going away; it was taking over his little body. They called this "chemotherapy resistance." The chemo wasn't working. In order to get to a transplant (bone marrow transplant), the patient has to be in remission. Evan was not. Evan still did not have a match in the national and international bone marrow registry either. He did have a 5 out of 6 match for cord blood; the next best option. But without remission, he would not be able to go to the life saving transplant.
In April 10, 2013, we found out that the Leukemia had spread to 95% of Evans bone marrow and 90% of his blood, basically completely taking over his body. At this point the doctors stated there was nothing more they could do; Evan was terminal. They gave him a few days to a week left to be in this world. The most heartbreaking words I have ever heard in my life!
Evan passed away on Saturday, April 13, 2013 at 9:57 am. My angel fought the most heroic battle. For such a small little boy who could not walk from his Leukemia almost a year prior and had been through a nightmare fighting for his life twice without ever realizing it...he is a superhero! He just wanted to be a normal kid and play outside and swim with his little buddies but instead he was in a hospital for almost 25% of his short life. But even then, Evan never complained about his cancer. He will never be forgotten and is truly missed! He became such an inspiration to so many across the globe! He is his mom’s hero, inspiration and courage every day! We ask that you become a bone marrow donor on the national registry or through the DOD. More matches are needed to save lives. If you are pregnant, please consider donating your baby's cord; many lifesaving procedures are happening because of cord blood. Please also donate blood and platelets; these donations go to cancer patients as well which is imperative to their survival during chemo treatments.
AML is a very rare form of Leukemia. It does not affect many children; normally the older population is diagnosed with AML, so in turn, they are not many new chemo drugs for this type of cancer. We need more research to find cures through funding. We ask that you donate and help support childhood cancer so cures can be found. Children are our future and we lose 7 a day to cancer, Evan included. It is not fair and our lives will never be the same without our beautiful children who fought so hard and in reality had no idea what they were fighting all together. Please help us and so many other families. Thank you!