Dylan's Defenders

Dylan Smith has been diagnosed with Ewing sarcoma.  An approximately 31 week Chemo treatment plan will start November 1st, with the possibility of radiation in between.  With so many unknowns, this is how we are going to support Dylan, Ryan, Angela and the entire family.

You can use this link to follow along and receive updates on his journey https://www.caringbridge.org/visit/dylanmichael/journal.  

How it all began:

In September Dylan started complaining of his left hamstring bothering him, we thought it was a sprained hamstring from sports even though he could not remember hurting it. Over the next couple of weeks his leg got worse. He was in so much pain constantly that it would bring him to tears. So we began to think he may have tore a ligament or tendon. Which we got checked out and he did not. We tried looking at the bigger picture and started noticing other things that raised our concern. He was thinning out, his appetite went from eating us out of house and home to almost nothing, extreme fatigue, headaches, stomach pains and pain when walking, lost almost 30 lbs in 2 months, had no desire for food and just was not our usual bud. Things were not adding up so we sought help from his primary care physician. She ordered every blood test possibly from inflammation markers to Lyme disease to mono, diabetes and more. We were going to cover every base.

Blood work came back with no clear explanation but did raise a red flag that something was not right. His PCP ordered a CT of his abdomen to start in hopes it would give us some answers. We ended up not being able to wait for the scheduled CT the next day because that night Dyl was having stomach pains that made it hard to breathe. His PCP suggested an ED visit to get the CT done asap.

CT RESULTS: on the scan the radiologist noticed a lesion on his ilium (mass on his pelvic bone basically). This is usually a sign of cancer and we had the choice to be transferred to Golisano Children's Hospital or go home to rest until they had a room ready for us possibly the next day. We chose to go home. LONGEST NIGHT OF MY LIFE. That word is terrifying, numbing, crippling....I can't even describe it.

Waiting is the worst. I could not think straight, could not eat, was nauseous and helpless.

We got the call the next day that a room would be ready at 4. Dyl and I packed a bag to get us through several days of testing and headed out. As you can imagine everyone was a mess. The twins are too young to understand and Dyl is their world. So they were upset he was leaving. Maddie I think refused then and still refuses to have any thought other than he will be fine. Which I envy and absolutely need her positivity. There is no right or wrong way to feel right now.

Dyl broke down a couple times on the car ride up and typical Dyl fashion it had nothing to do with his fears it had everything to do with leaving everyone so sad. His only complaint or worries has been not wanting to be poked and prodded. I did not have it in me to tell him what he was about to face. We were just going to have to take it minute by minute and moment by moment.

ARRIVAL: Golisanos Children's Hospital is amazing. His private room, the staff and amenities are remarkable. We got in and they started right away. We were in for a long couple of days but we needed answers so we were going to do whatever was needed.

All funds raised through this GoFundMe will be disbursed to Diane Smith, Dylan's grandma, who will transfer the funds to Ryan and Angela to be used for medical expenses, gas and parking for treatments, groceries and other miscellaneous expenses.