Schneider Family Swinging for the Fences

Hi. We are the Schneider's (Allens, Studwells & Coats) Nothing is more painful than watching your family member going through something so devastating we can not control or take away. If anyone knows us; family is EVERYTHING. Please read the following letter from Brian and Heather to understand the journey they have been through with Mikey the past five years. He is the sweetest, kindest, strongest soul that makes us all laugh and appreciate everything we have been blessed with in life.

Brian and Heather rarely ask for anything, so we thought we could lift some of their burden to raise money to help pay for past and ongoing medical bills and help them to create any happiness they can for Mikey.

Friends and family,

For those of you who have seen Mikey and Brian recently, you may have done a double take and wondered why they shaved their heads. After all, hasn't Mikey been cancer free? Respecting Mikey's wishes, we stopped all cancer treatment updates over the last few years. We removed the bumper stickers and stopped wearing the hats and bracelets. We were hopeful that if we continued to live life quietly in treatment, we could manifest his stubborn disease away. With Mikey's permission, we share now that he has never been able to get rid of it. To our gut-wrenching heartache, Mikey's cancer is not curable due to a mutation discovered during testing. As a result, we have modified our expectations and approach to treatment over the years. Brian and I have diverted all of our energy working to fulfill our promise to Michael - to find and only agree to effective therapies that would allow Mikey to live on his terms. We refuse to "lose Mikey" in the treatment process of trying to save him. We "buy time" and keep his mind, heart, body, and immune system strong so that he can qualify for the next promising clinical trial that just might be the home run.

In 2020, with stable disease, Michael enrolled in a challenging vaccine trial at Memorial Sloan Kettering in New York, and his cancer remained blissfully stable for twelve months. He missed one week of school every six weeks to recover from the harsh side effects of the vaccine. Considering the eleven rounds of chemo and ten rounds of immunotherapy and proton radiation Mikey endured during 2018-2019, the vaccine trial was manageable. He reached vaccine number seven (out of eight) in 2021 before one of those stubborn, dormant spots became active. Relapse. Terrifying.

Brian and I spent the spring and summer of 2021 consulting with medical teams across the country. Unfortunately, we were only met with more of the same crappy, conventional treatment options. All teams pressed one particular treatment that would make Mikey highly radioactive for days in isolation where we could not get close to him. We knew the side effects would be horrendous (worse than 2018) and require stem cells, multiple platelet, and blood transfusions over weeks due to destroying all of his cells. Most importantly, there were no guarantees that it would work. In fact, we did not know of any older kids this treatment has helped over the long term. So, we did nothing. For the first time since being diagnosed in 2018, Michael enjoyed seven months of no treatments that included a kick-ass summer with his family and friends and rolled right into his first year at Brien McMahon High School. He even got to play on the freshman soccer team and won a wrestling match against Norwalk High. As a result of no treatment, we knew we ran the risk of his cancer spreading. And it did, like wildfire.

No regrets.

During the fall of 2021, an encouraging clinical trial opened at MSK that would potentially target the mutation that makes Mikey's cancer so stubborn to treat. Unfortunately, that trial did not work. His scans were terrible. Progression. Our MSK team was out of options for him. Michael began to experience excruciating bone pain in his legs, hips and shoulders for the first time.

In January of 2022, Mikey's pain from his disease progression intensified but luckily, a trial we had been waiting for finally opened at the Children's Hospital of Philadelphia (CHOP). Although the side effects from this trial were supposed to be minimal based on the research, his recovery until the next round was tough. Michael could no longer go to school and learned online. John, Ryan, and Lachlan insisted that we both stay with Mikey, so our family lived divided. We commuted and spent two weeks out of every month overnight or in the hospital down at CHOP. It was exhausting but this treatment worked for the first six months. His progression stopped. However, during his eighth round in June, Michael experienced terrifying complications that required emergency radiation to his spinal cord to prevent paralysis and permanent bladder dysfunction. Within the same week, scans revealed disease progression everywhere.

It is a surreal and sobering time for our family as we approach our fifth year since being diagnosed. We have recently had unimaginably tough conversations with the teams at MSK and CHOP regarding outcomes for older kids like Mikey, diagnosed with Neuroblastoma. As a result, we have arranged for concurrent care to do right by Mikey's wishes. We have enrolled him in "Home Health" to keep him home and comfortable while beginning a new clinical trial down at CHOP that is potentially curative. Although he had to give up his hair and "good flow" as a side effect, this trial is promising for chemo-resistant kids like Mikey. Our children have been "fast-tracked" and grown up way too soon from the trauma they've experienced and watched their brother endure treatment after treatment for years. Yet, we still remain hopeful, continue to kill for the little things, and work daily to accept that "THIS" is bigger than us. We have met many, many strong great kids like Mikey on this journey who are no longer here. There is no warrior. There is no battle. There is no winning or losing.

Brian and I are trying to plan a few quick family trips to white sandy beaches and blue waters between now and the fall to continue to make beautiful memories. We hope to repeat our last family trip to Hawaii in 2019 and potentially go to a few UFC fights to watch his favorite fighters live. Wrestling season is around the corner:)

Please continue to pray and send wishes for strength and miracles for Mikey and our family. He just needs time. Time to live for a shot at that next treatment on the close horizon if this current treatment fails. Thank you for listening and for your love for our family.

Love,

Heather and Brian