Written by Mom Melissa, MATIO Parent to Student Gabriel.
Gabriel is our sweet miracle boy. He is 7 years old, turning 8 this December. We call him our miracle, because if science was to be believed, he should not be standing on this Earth. Even 5 years later, doctors still stare at him baffled, unable to fully comprehend how he has survived the journey.
Gabriel was diagnosed at 9 months old with a gene mutated form of acute lymphoblastic leukemia. And while ALL is often touted as one of the most treatable childhood cancers, we would soon learn that infant blood cancers are a whole different animal. It was relayed to us that Gabriel’s cancer most likely developed in utero, and the gene mutation he had was common in children diagnosed under 1 year of age. This would make his cancer resistant to chemotherapy, and that much harder to treat. Gabriel was diagnosed and started on his original treatment protocol at St. John Hospital in Detroit in October of 2018. He unfortunately relapsed within the first 6 months, before even completing the protocol. This lowered his odds of long term survival even further.
Gabriel’s case was transferred to the University of Michigan in Ann Arbor at this point, as it became obvious that he would require more sophisticated treatments that were not available at St. John. The road was rough and the path was never linear. We ran into many treatment complications, line infections, drug reactions, and unfortunately several additional relapses. The biggest relapse occurred in November of 2019, when we were preparing for a specialty treatment called Car-T therapy. This therapy is meant to train your own immune cells to recognize and destroy cancer cells.
Just 1 mere week prior to this admission at U of M, Gabriel was shown to be in remission. And testing on that day found his blood and spinal fluid to be filled back up to about 80-90% with leukemia cells, as well as masses of leukemic cells in his face and chest. Needless to say, Car-T therapy was out of the question. And he endured more pokes, sedations, procedures, pain, and fear in the 3 weeks during that admission than most will ever see in a lifetime. But his team decided to throw a previously rarely used immunotherapy treatment at him, with the hope of slowing progression and prolonging his sweet little life.
During those weeks, devastating and unthinkable conversations were had between my husband and I, and Gabriel’s treatment team. Being a nurse myself, it was not difficult for me to read between the lines and decode what was not always being clearly expressed to us. Gabriel was dying, and we knew that we didn’t want to waste another minute more in a hospital bed hooked to an IV. So we made him a bucket list and we took him home in hospice care. We planned outings and events that we knew he would love, made hand and footprint keepsake art (that I still have to this day), threw him a blow out 2nd birthday party (compliments of The Rainbow Connection), took his wish trip to Disney, and spent as much time with family and friends as possible. We kept watching and waiting for the decline to come. But it never did.
Our amazing, spunky boy just kept on kicking butt and living his life. And do you remember that Hail Mary immunotherapy treatment I mentioned before? He kept getting those infusions, month by month. His team just made up the infusion schedule as they went along, as there was very little data on this medication or this application of it. And wouldn’t you know it, the medication cleared his blood, cleared his spinal fluid, and melted away those masses of cells. He was eventually cleared to undergo Car-T therapy and then later a bone marrow transplant to solidify his remission. Neither of these treatments were successful, but Gabriel remained planted solidly in remission. The medication that saved Gabriel’s life is now being used regularly at U of M to bridge other relapsed kiddos to bone marrow transplant. His long term remission is the subject of a journal article written by his team that has no doubt saved numerous children that have come behind him. He has blazed the trail for changes in treatment algorithms and better outcomes for relapsed leukemia patients at U of M. He will be celebrating his 5 year survivorship in January of 2026, and he is thriving.
MATIO (Kids Kicking Cancer at that time) was briefly woven into Gabe’s story during treatment when we attended their annual Halloween party hosted at Cranbrook in 2019, right before his big relapse. I remember that it was likely the only event I was comfortable going to that year, because we were preparing Gabe for life saving treatment, and we couldn’t risk him getting sick. I was beyond impressed that the entire facility was closed and cleaned top to bottom to accommodate this community filled with fragile immune systems, just like my son’s. If I’m being honest, we were so inundated with active treatment at that point, and I didn’t really look much further into MATIO’s mission or its programming at that time. It wasn’t until several years later, that we kept getting the nudge from one of our favorite fellow cancer warrior families and Gabe’s bestie Lena, to consider joining. At this point, Gabriel continued to defy all odds and remained in remission. He was 5 years old and had just started kindergarten.
I remember feeling unreasonably anxious when he first started because we were unable to make the Wednesday class time work. This class, as I was told by Sensei Michael, was the “controlled chaos” filled with all the fresh and energetic little ones just starting on their journey of learning the skills that make a powerful martial artist. I worried so much that Gabriel would be disruptive and not be able to handle the expectations of the Monday night class, where he would be the youngest by a long shot. I wish, knowing what I know now, that I could go back and tell myself then that I didn’t need to worry for a second. Gabriel fit seamlessly into that class like he was meant to be there all along. I frequently get asked to speak about my favorite parts of MATIO. And this right here is one of my best examples. The change I saw in my hyperactive, wiggly all the time, never could sit still, and selectively hearing my son was amazing and immediate. When he would go into class, it was like a switch would flip. He was so focused and attentive. He listened closely and took everything in fully. He was so intentional with his movements, his breaths, and his execution of every newly learned skill. His improvement and progress over the weeks was so obvious and incredible to watch.
I remember feeling so welcomed and truly loved by all the staff in those early weeks. I felt so grateful that Gabriel and our family had really found a place of belonging. There was, and still is to this day, a palpable vibe that you get when you walk through those doors. A feeling like we’re safe here, and these people truly understand the brutality of the journey we have walked. They want nothing more than to give my son the tools to be able to cope with hurt and fear, but also to allow him to express himself and do something that normal kids get to do.
Once we were regular weekly class goers, it was so easy to start taking advantage of all of the other amazing things that MATIO has to offer. We have loved attending holiday parties where my kids have danced circles around everyone on the dance floor, brought home oodles of crafts and gifts, and just genuinely have enjoyed spending time with other MATIO families we have come to love. We have been invited to Camp Michigania the past 2 summers and the kids have gotten a true old fashioned camp experience complete with camp stories and songs, skits, nature hikes, swimming, and a rare unicorn sighting. Gabriel has participated in science camp at Cranbrook with all of his besties. We have spent soggy and rainy but amazing days at Cowboys Kicking Cancer the last 2 years, after which I have had to explain to my daughter for weeks that she indeed cannot ride a horse every other ordinary day at home. We have taken part in group cooking classes, where my kids all tried and loved homemade pesto for the first time.
Gabriel has been a part of several martial arts demonstrations, during which he has truly come to understand the importance of growing as a powerful martial artist and teaching everything he knows to the world around him. My kids have been the blessed recipients of new bicycles, generous holiday gifts, tickets to take a ride on Thomas the train at Greenfield Village, and a scholarship for an innovative camp at The Henry Ford. And just recently, my 4 year old daughter Scarlett has started regularly attending Monday night classes with her big brother. Our family has honestly been given the most amazing opportunities and made some unforgettable memories because of the MATIO events we have been welcomed and encouraged to attend.
Our family’s perspective of MATIO may be somewhat unique, given that we are on “the other side of treatment” as I like to say. We did not become loud and proud members of the MATIO family until after Gabriel had completed active treatment. It’s sometimes hard to adequately put into words, but I think a lot about the blessings that MATIO has provided to me personally on this journey. After the dust settled and the constant looming threat of relapse became a little less intense, I found it incredibly difficult to settle into some kind of “normal” in our lives. I think people naively assume that once the active fight of treatment is over, things magically go back to normal. And for us, the added layer of a literal miracle cure meant that people also often assumed that we were nothing but overjoyed to be in the position we were in.
In reality though, it was much more difficult and painful than I ever let on. I struggled with this idea that we had lived in survival mode for over 2years while our son’s life literally hung in the balance, and I was expected to just snap my fingers and go on with life as if nothing had ever happened. Processing the effects of trauma and grief felt like a full time job some days. And it was so difficult to relate to other parents and families who had just never experienced the worries that we were facing on a regular basis.
The community we have found in MATIO has provided so much healing. It has given me parent friends who truly understand the unique struggles that families like ours face. It has provided a place where we can belong and a safety net where it’s OK to process the trauma in our own time, while allowing us to move toward that normalcy that we are craving. It has reminded me so often that we are not alone, and we will always be loved and supported by the staff and families at MATIO. Watching my children learn and grow into powerful martial artists has honestly provided much needed healing for my heart.
The fact that MATIO exists is a daily reminder and proof that something good can come from something so devastating. The relationships that we have formed, the coping techniques and martial arts skills our kids are honing, the experiences we get to have, and the beautiful memories we have made are all the bright spots that have come from MATIO. And it has allowed families like ours to focus on those bright spots and start to move past the trauma that we have endured. I think some families complete treatment and never want to look back in any capacity. They never want to be part of any organizations that could potentially remind them of the nightmare of going through cancer treatment with their child. But if I could give one piece of advice to prospective parents, it would be to dive in head first. Open yourself and your child up to the possibility of experiencing the sunshine after the storm. I promise, you won’t regret it.