Asher

In this world, you hold on to hope.  

Everything changed in an instant. We had just moved back to Colorado – to New Castle outside Glenwood Springs – after living in California for 5 years to be closer to friends and family, and to be moral support to my father-in-law who had just lost his wife, my husband’s mom, to breast cancer. We were excited to live in a wonderful community, and for Asher to grow up playing.  It seemed we had finally found our perfect life…for 2 whole weeks.

Two weeks after Asher’s first birthday, we had begun to notice increasing irritability, then he began vomiting and then stopped walking. We made an appointment with our pediatrician but on the night of August 22, we knew something was off and took Asher to the ER.  They did a CT scan and it only took a few life-changing moments to see that white blob on the screen and hear those words, he has a tumor.  My response was, “no, it should be my tumor – not my baby – give me the tumor.” Because that is what you do as a parent, you would sacrifice everything for your baby.  We were helicoptered to Children’s Hospital Colorado and within a week, Asher would have 2 major brain surgeries; one craniotomy and a shunt placement to manage the swelling on his brain.

The MRI revealed 3 tumors, which we named the big one, the small one, and the scary one. They removed the big one in his cerebellum in the first surgery and biopsy revealed that his tumor is classified as an aggressive and rare ATRT, Atypical Teratoid Rabdoid Tumor – it’s not a great diagnosis – but also not hopeless – and in this world, you hold on to hope.

Asher endured 2 rounds of induction chemo, in hopes of shrinking the scary tumor.  Following chemo, they removed scary tumor in November – which at that time was all ‘necrotic’ or dead tissues, meaning the chemo was working.  Asher then had 3 rounds of high-dose chemo with an autologous stem cell rescue followed by 30 rounds of focal radiation.  Asher tolerated chemo, we had the typical ups and downs – it is rough, and exhausting – you are in survival mode everyday.  You learn to catch vomit in your bare hands with ninja like precision and diarrhea is such a daily topic of conversation that I learned to always travel with an extra set of clothes. We learned to sleep sitting up in a chair holding Asher, who didn’t have enough energy to even watch TV.

This cancer journey is one of extremes.  I have never known such darkness and sadness as cancer, but at the same time I have never seen such an outpouring of kindness, love, and light from complete strangers.  I find hope in organizations like The Morgan Adams Foundation.  They are literally doing research on Asher’s actual tumor. This research has turned this mass of cells I thought of as evil life-ruining cells and turned them into a mass of cells that are working to give future children a better chance at life.  Like I said, in this world, you hold on to hope.

Asher is currently 3 months out of treatment, with follow up scans in a few weeks.  Since finishing treatment, he has regained his ability to walk with only a slight imbalance and is gaining strength back on his left side.  He still struggles with words, but you wouldn’t know it as he loves to chatter and sing on in his own language. He loves to swim, chase his dog Bodie, play the ukulele with his dad, and read books while snuggling with his mama.