Supporting Shawn

How did we get here? The question that just keeps going through my mind like ticker tape on the news channel.

The ‘good news’ is that my grandson, Shawn, is done with chemo but the celebration is short lived. I am still wrapping my head around the conversation – NF1, MPNST, Sarcoma, Radiation, rare cancer. Words no one wants to hear and yet here we are.

Shawn will be 17 in just a few short days. A time in his life where he should be enjoying becoming a young adult. Instead, he’s spent the last few months in and out of the hospital for chemo treatments. Instead, he’s going to spend the next 7 weeks getting radiation treatments Monday-Friday. Instead, he’ll be spending the next year getting CT scans, MRI’s, PET scans every 3 months and then every 6 months after that. How did we get here?

In 2021 Shawn was diagnosed with Spastic Cerebral Palsy. He had been a toe walker for most of his life but now he knew why. He spent time in physical therapy, stretching and learning how to walk heel to toe. He wore leg braces to help keep his feet flat. He received botox injections to help loosen the stiff muscles. He put in the hard work and made progress.

Fast forward to 2023. Shawn started having pain in his legs. It became bothersome for him to walk. After speaking with his family dr, he was referred to a neurologist. Shawn was sent for full body scans. This is when doctors found the ‘bumps’. Official diagnosis NF1- Neurofibrosis 1 – Shawn’s scan showed all of the soft non-cancerous lumps throughout his body and one large tumor attached to his pelvic nerves. The cause of his pain. The doctor didn’t like the size, shape and density of the tumor so surgery was scheduled to remove it as soon as possible. At this time, cancer was never brought up.

Oct 2023 – the tumor is removed. It has ‘aggressive’ cells. Chemo. 5 rounds. Body scans. Blood work. 13 weeks in and out of the hospital. More body scans. Chemo looks like it’s working. How did we get here?

Feb 2024 – Biopsy results are finally back. Aggressive cells are cancerous. MPNST is the official diagnosis. Malignant Peripheral Nerve Sheath Tumors. Residual cells. 7 solid weeks of extremely focus laser radiation. How did we get here?

Rather than planning for Senior year, senior pictures, driver’s license – 17 year old ‘cool’ stuff, Shawn and his parents are now tasked with planning for the unplanned. Seven weeks of outpatient radiation, only available at CHOP, Philadelphia. There is no time to even process what is happening because they now have to try and figure out how to afford the expense of traveling back and forth to Philly every day, 5 days a week. How to afford missing work when all that is available is unpaid leave of absence. How to continue paying for everyday expenses all while medical expenses continue to add up and will continue to add up even after treatment. HOW DID WE GET HERE?

My daughter, Jessica, hates to ask for help for anything. She prides herself in figuring it out, until now. When she knows her son needs her most, she’s spiraling in her own thoughts, feeling overwhelmed and doesn’t know how to ask for help. As much as I know it would pain her, I’m here asking for help for her, for Shawn.

Shawn’s parents will be missing a considerable amount of work going to the hospital every day. They’ll be burning thru money for gas, tolls and/or train commutes while still trying to keep paying for everyday expenses. I am hoping that you can help in any way so that they may focus their efforts on supporting Shawn through this without having to worry about finances.

I also want to ask, if you could, pray for them. Pray for their strength. Pray for the drs. Pray for Shawn. Pray for a positive outcome. Pray for God’s blessing over them all.

Thank you and God Bless.