We are a family of six. Jason and I (Shawnalee) have been married for 9 years and are the parents of 4 wonderful kids. Jordan (17), Cameron whom would be 15, Jason Jr (7), and Tiara (4). In april of 2010 our lives forever changed. Cameron was diagnosed with Anaplastic Ependymoma. Cameron was such a happy, vibrant and strong kid. There was no way he couldn’t beat brain cancer…. right? Cameron fought for 5 years, fighting through 5 brain surgeries, two 6 week stays for radiation, every chemo known to man, and approved and trial meds. In November 2014 his doctors gave us the worst news any child or parent could ever receive.
Treatment Outcome: Bereaved
Our little girl Simone was diagnosed at 10.5 months old with infant leukemia. This is a very rare (about 60-70 cases a year) form of leukemia with a poor prognosis. Despite her age and prognosis our little girl was a fighter. She handled hospitalization, chemotherapy and procedures like a champ and always had a smile on her face. She could always be counted on to bring a smile to every nurse, doctor and patient on our oncology floor.
We have always remarked that our family was destined to be. We met in the Army and through sheer luck, ended up in the same units through a five year tour, including more than two years together in Iraq and Afghanistan together. After leaving the Army in 2008, we returned to Colorado to raise a family. Blessed with our son Tristan in 2008 and our daughter Emma in 2010, our “plan” for our family appeared to reach completion with the birth of our third child, Jackson in 2013.
Our story begins in early September 2014. Our 3 year old daughter Alison spent the spring/summer of 2014 battling constipation. The very regular issue for a 3 year old took a turn for the worse when we were visiting our family in Virginia for Labor Day weekend. Ali was dealing with quite a bit of pain in her abdomen and bottom area.
Healthy pregnancy, healthy birth, and healthy baby—his mama and dada, Deana and Jim, were overjoyed. For the first six months, life felt like it was meant to be. Rett was by no means an easy baby, but he was thriving, aware, and simply beautiful to look at. On October 28th life changed forever as a visit to the pediatrician for what seemed to be a stomach bug turned into every parent and child’s worst nightmare. Cancer, an extremely large solid tumor, was found on his liver. He’d start chemotherapy immediately. Malignant rhabdoid tumors are nothing to scoff at, in fact, they are extremely rare and aggressive and the prognosis is dire.