Ethan was diagnosed with Stage 4 High-Risk Unfavorable Neuroblastoma in July 2010, at the age of 9. No evidence of disease was achieved after an Oct. 2010 tumor resection. Ethan was in remission until a relapse on March 15, 2012.
Ethan's journey with neuroblastoma began on June 30, 2010. At the time of diagnosis, Ethan was very active, playing baseball and doing all the other activities that most nine year old boys do. The beginning symptoms of this disease presented two months prior to diagnosis. At first, Ethan would very randomly and only briefly complain of a tummy ache. A few weeks before diagnosis, he voiced that both his legs (inside of thighs) hurt. A couple days before diagnosis, the leg/tummy pain was keeping him up night. Our home doctor treated him for constipation, but after that did not help, a CT of his abdomen was performed where a huge abdominal tumor was found. Ethan was immediately sent to the hospital where multiple tests confirmed stage 4 neuroblastoma.
Update August 2013:
I know there have been a lot of journal entries, so this is a quick run down for anyone new to this page.
- July 2010 diagnosed as Stage 4 High Risk Unfavorable (MYCN - Not Amplified) Neuroblastoma. Cancer was very lightly scattered in his marrow. One softball-sized tumor sitting in his abdomen. Ethan was 9 years 5 months old at diagnosis.
- Ethan completed the COG protocol: six high dose chemo rounds, tumor resection (no evidence of disease after resection), stem cell transplant, radiation, and chimeric antibodies/Accutane. Finished frontline treatment 09/2011.
- Relapsed 03/2012. Multiple small abdominal tumors, hard bone disease in right and left arms. Endured two rounds chemo and two rounds MIBG radiation.
- Achieved a second remission 10/2012.
- Relapsed 01/2013, disease back in both arms. 4 rounds of chemo and radiation greatly reduced disease. Enrolled on Fenretinide trial 04/2013 with only very minimal right arm disease. Scans 06/2013 arm disease gone, but soft tissue progression in neck. Surgery in New York (MSKCC) removed neck tumor. Two rounds chemo after.
- Scans 08/2013 showed new dime size soft tissue tumor in abdomen. Disease also fully back in right arm as well as new small spot in spine. Surgery again in NY removed the soft tissue spot. We were about to start radiation to bone disease when a genomic report came in stating Ethan has the ALK mutation. Ethan started full dose Crizotinib in San Francisco. Scans at the end of round one showed soft tissue and bone progression. Pelvic tumors were resected. 10/2013 - Ethan enrolled on a CDK4 inhibitor (he is CDK4 amplified) in Boston. 12/2013 scans showed soft tissue and bone progression. Two rounds of chemo/Crizotinib followed. 03/2014 - Ethan enrolled in the nk cell study at MSKCC in NYC. He received high dose chemo, followed by an infusion of his dad's lymphocytes and 5 days of mu3f8 antibodies.
Even though we are in a fierce war, we don't focus on the short term, but yet the eternal hope of Jesus Christ. He is our Rock and strength through all of this.
Today marks six years since Ethan took his last breath, a fact that just seems really hard to even process. I've attached a link to a Facebook post I wrote. Six years later and not a second goes by we don't remember and miss the most faithful boy we have ever been privileged to love. As life around us seems to be crumbling right now, I pray you are encouraged to stand unshakable.
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