The story of one boy who never gave up & lived life always being thumbs up!
Our story begins on May 9th 2012 at 3:55 in the morning when our perfect little boy was born, he was 9 days overdue, 8lbs 11oz and 22.5 inches long, he was everything and more.
He was a very healthy baby, & had an old soul as most would say. His piercing blue eyes and his dimples made everyone instantly fall in love with him. He loved cars, classic cars, superheroes & any kind of mighty machine! He was excited to grow up to be a firefighter so that he could help others and of course, drive the cool firetruck.
His personality was one of its own. With a smile always on his face, a vocabulary of a 10 year old and an attitude like his momma! He was a goof ball-comedian and a very creative little man who cared so much for others. He was my outdoor adventurer & fort making buddy. He had endless possibilities and loved everything with a beautiful passion for life. He made life complete and made everything better, he was my world, my best friend and the love of my life.
He had always been so healthy and barely had ever been sick, which makes this next part hard to believe.
On April 24 2015 at the age of 2, he could no longer pee. His belly was distended and I knew right then and there I needed to bring him into the ER. He had no fever or any other symptoms except for he had to constantly go to the bathroom, which we figured was a bladder infection, well that bladder infection was not the case. He was catheterized which was traumatizing for all of us, ill never forget the look in his little eyes and the feeling of his hand squeezing my arm. He was then taken for an ultrasound, where we knew something was wrong. When 3 different doctors come in to see the screen and discuss with each other what was going on, our stomachs sank. They then told us that there was a mass that looked about 10cm.. yes 10cm in his pelvis that was blocking him from being able to go to the bathroom on his own. We were instantly an impatient and our long journey began.
A few days after the dreaded day we brought him in, we were being transported to another hospital that could help us more to figure out what was going, after weeks of test after test, that included biopsies, MRI,CT, Bone scans, and every other test imaginable we found out he was diagnosed with cancer. More specific Rhabdomyosarcoma Embryonal, stage 3 groups 3. no this wasn’t good but we were going to fight it and never look back. We were in full on kick this cancers butt mode and so was Mason. On his third birthday he started his first chemo, a very fearful day, he was in a lot of pain and wanted nothing to do with his birthday, even though we decorated his entire hospital room with balloons and banners and of course an abundance of present. it just wasn’t a good day. We needed a way to tell Mason what was wrong and what was happening to him. We knew we couldn’t lie to our little man. So we told him he had some bad guys inside him and it was time for him to become a superhero, and that meant getting superpowers (chemo) through his port; which happen to look just like iron mans power source!
We spent a total of 6 week in the hospital until we were finally discharged for 3 days to only come back for another week of chemo. Although all these new things were happening to Mason, from having a catheter constantly in him, to losing all his hair to learning how to walk again and getting use to all his medication and shots he needed, he still managed to smile and play with his toys. I’ll never forget the first thing he wanted to do when we pulled into our driveway after those long weeks in the hospital, he wanted to play in the dirt with his diggers. It was like nothing had changed.
The weeks that followed were full of tears, lots of chemo and trying to figure out this new life that we were now living. Also because Mason would be constantly proving the doctors wrong, his catheter was finally out and he once again had his independence, nothing was going to stop him. These weeks were hard, explaining to everyone what was going on, and why we had to be so cautious and careful with him. He was strong but his insides were so very fragile and any little thing could harm him, but that also meant the chemo was working. It was hard for others to understand, they knew it wasn’t good and it was hard but no one will ever understand what we went through and what we had to watch our son go through and the worst of days.
Theres were many times were Mason at 3 years old knew what throwing up meant and how quickly he would run to the bathroom, get sick and come back and play. Sometimes we didn’t even know until after he came out of the bathroom that he was getting sick! He was that independent and was proud of it. some days he didn’t make it, and I can’t count how many times my husband and I cleaned up chemo puke or caught it in our hands (even though they told us to never touch it because it was very toxic). He was no longer my tall&solid boy. He became my tall skin & bones boy. He had lost a lot of weight and was still growing tall but he was still my beautiful boy. His beautiful bald head and pale white skin may have looked cute to others but to us we knew what was going on inside of his little fragile body.
August, 3 months on treatment, he had a routine MRI scan to see if his treatment was working, and sure enough it was the best news! The tumours had shrunk 3cm already! He was responding exactly how we hoped and everyone was so happy. The next step was radiation.
Radiation was a tricky one. Mason wasn’t a candidate for surgery because he had more then one tumour, and he wouldn’t be able to get regular X-RAY radiation because of the location and his age. The radiation would stop his pelvis, hip and parts of his legs for growing and they would stay at a 3 year olds’ size while the rest of his body would grow. No. That was not an option. So my husband began researching researching and researching all on our own to find another way of helping our son. With a second and third opinion from other hospitals we found what we needed to do next. Proton Therapy it was, this is the same treatment as radiation, although it is more precise and it would not effect his bones and growth! Of course we were sold but it would not be easy getting to were we needed to go, Houston Texas,
It took us almost 6 weeks to get approved and I took to social media to get this, much needed, ball rolling and be on our way to getting this much needed therapy (being late in his protocol though, meant we were behind schedule).
We moved our life in Ontario, Canada to Houston, Texas for 2 months, & this was the best experience we had during his entire care throughout this journey. I’ve never met nicer, caring, and amazing individuals in my life. The love they all showed for Mason was amazing and we instantly felt like we belonged there. From his nurses & doctors, the receptionist to the other patients, they all immediately took a liking to Mason. Some grown men & women would hug Mason and start to cry as they were going through the same treatment as him. We met amazing families who we will always share a bond with and will always be a big part of Masons life. Being here made it so hard to leave and come back. Mason even loved every part of it, even though everyday for 28 days straight he would be sedated and getting his proton treatments, and then being driven to another hospital to get chemo and blood work. The days were long, but with everyone being amazing it made them go by easier and smoother then ever.
On October 20 Mason had his last proton treatment, he hit the gong and it was now time to come back home, none of us wanted to leave, but we had to.
The next 3 months were busy with constant chemo every week. With knowing that the treatment was working and his tumour continuing to shrink, things were moving along!
We were able to celebrate christmas& new years at home!
February of 2016 is when everything took a turn for the worst when Mason was starting to have the same symptoms that he did in the beginning, We were worried, but at the same time we never thought that it was possible for his tumour to be growing while still on treatment. On February 18, 2016 we found out that indeed his tumour was nearly the same size it was in the beginning. We were heartbroken, defeated and just so upset and confused with… HOW!! He was once again dependent on a catheter and now it was time once again to find a new protocol to start him on and other options for getting this cancer under control.
They began him on a very, very aggressive chemo protocol that including 6 chemo’s being pumped in him every few weeks for 3 days straight. With these drugs came with a lot more side effects, making his body even more fragile then before. He would need many blood & platelet transfusions. He would need to be even more quarantined from the outside world because his immunity would be zero for weeks, and then once they were back up we would start this cycle again. These chemo’s were hard on Mason and effected him very differently then the ones before. My energetic boy became bed ridden and barely walking or eating. These drugs were horrible and beyond scary, most adults would not be able to handle what he was getting, and most of the time they said this chemo alone could kill him. We were so scared. What was even more scary, was knowing that the only option they were giving us was surgery. The word surgery is scary for anyone but once you hear what is involved in the surgery that mason needed it will leave you wondering how is it even possible. What his surgery including was a radical cystectomy or pelvic exenteration; the removal of his bladder, colon, prostate and other lymph nodes in the area. this would leave him with an colostomy, ureterostomy and no function of his boy parts. this wasn’t an easy decision but they gave us no other option and surgery was scheduled for April 26 2016.
So once again we packed up and left our home and travelled to another well known hospital that would be preforming this surgery and they told us to plan to be here for no less then 3 weeks.
The most nerved racking trip we have taken. We explained to Mason that he was getting this surgery and that we had to get the bad guys out so that meant he would have a different way to pee and poop now. he wasn’t happy but of course we explained it the best we could to a very smart 3 year old that was very well aware of what was going to happen. But he trusted us and we told him we would make sure those bad guys are gone forever. He gave us a thumbs up.
Surgery day came. Consisting of 15 hours, 3 plasma transfusion, countless blood transfusions, a huge scare, 15 hours of his body being shut down, and one of the hardest surgeries this “dream team” of surgeons have done. The surgeons came out and told us that Mason had A LOT of surgery and it was tough on his little body. As they guided us to the recovering room, I was shaking and could feel my heart trying to escape my chest. There he was laying flat on the bed with tubes and wires all over him and him shaking uncontrollably with his very raspy voice asking for a banana and youtube. Of course he couldn’t eat for a week after the surgery but to hear him want a banana was a beautiful thing. However looking at him I thought to myself, “what did I do to my baby?” It looked like I had destroyed him. I had to excuse myself before i tumbled to the floor. Seeing him like that was the hardest thing to see. This was an extreme surgery that is rarely done on adults let alone on children. We were very lucky to have some of the best surgeons in the world working on him.
The few days to follow Mason kept amazing us and amazing all the doctors and nurses with how well he was handling everything. From sitting up, to even walking 3 days after his surgery, and even understand his new accessories on his belly and his super cool scar that showed how strong and brave he was, our Mase-man truly was a superhero. The two ostomies took us some time to get use to, and was stressful trying to find the perfect products that fit his little belly and didn’t leak.
It was now May 7, 2016 and we still thought we would be in the hospital for at least 2 more weeks, which would mean another birthday for Mason in the hospital. However, Mason had a different plan, and because he was doing so well that they allowed us to be discharged after only 10 days! He amazed everyone and amazed us with how well he was adjusting to all these new things and all he wanted was a chocolate birthday cake!
Come May 9th we were able to spend his 4th birthday at home finally! We made sure to decorate the house in his favourite colours ( green and black) with every hot wheel decoration we could find!
This was the best feeling. After a year, we could finally say he was cancer free, he began maintenance chemo and we were having the best days ever. We would get to swim in his new pool and feel like a normal kid. Until a few weeks later on my birthday May 28, he started constantly throwing up and being so very weak. He wasn’t acting like our little man and our doctors figured that he just caught a stomach bug and it would pass.
June 3rd 2017, we found out his liver was full of 30 or more tumours… we were shattered. Every ounce of our hearts were in pieces. This was the end, we could no longer save him, he was terminal, and only had a few weeks if we were lucky. We went from the best days to the worst days. Our son was dying.
We took him home on hospice, and it was a hard few weeks, of watching him deteriorate. His organs were shutting down, he couldn’t eat or walk and by the end was so weak he could no longer speak. He was skin and bones and his face was sunken in, he no longer looked like my baby, something else had taken over his body.
On June 27th,2016 he took his last breath at 4am in the morning in my arms.
I held his body for 3 hours after just wishing this was all a bad dream, I would wake up and he would still be here. My baby boy, my world and my everything was gone, at 4 years old his life ended. As we walked him out to the van and watch it leave our house, my stomach was so sick, my heart had left my body and I would no longer hear my babies voice, see him, or watch him grow. He was gone and life seemed impossible now. Feeling your child’s last heart beat and hearing his last breath is something that can never be removed from a parents mind.
Mason beat cancer, not in the way we hoped, but he beat it, and its time we wake up every day and Fight Like Mason.
