Maddox J. Almeida was four years old when he was diagnosed with inner ear Rhabdomyosarcoma at Mass General Pediatrics. Here is his story...
At the end of February 2020, four year old Maddox developed Bell’s palsy. Meaning that half of his face was paralyzed. Joey, Maddox's dad, brought him the ER while his mom, Brittany, stayed home with Maddox’s twin sister, Brielle, because she wasn’t feeling well herself. While at the ER they did some blood work on Maddox and sent him home with steroids and antibiotics. He went to his pediatrician a few days later, there they were told this was most likely viral and should go away. An appointment was made for Maddox to see a neurologist, but they wouldn’t be able to see him until April. On that Friday, Brielle had an appointment to see an ear nose and throat specialist at Mass Eye and Ear in Boston. While at the appointment, Brittany, still uneasy about the results she’d been given for Maddox’s facial paralysis, asked Brielle’s doctor if he wouldn’t mind taking a look at Maddox to see if this all seemed normal to him. The doctor told Britt that Maddox should go to the Emergency Room there at Mass Eye and Ear to be examined because he believed something wasn’t right. Upon looking into his ear the doctors found that they were unable to view his ear drum so he would need to go for a CAT scan to see what the obstruction was. Immediately we all knew something was really wrong. The results came back abnormal, they believed the obstruction was a mass in Maddox’s ear canal, but he would now need an MRI to confirm and they would biopsy whatever the obstruction was to determine what it is. What was just a couple of hours seemed like an eternity. All the while Brielle kept asking for her brother, because they were never apart for this long.
To paint a picture of Maddox and Brielle’s inseparable relationship: One day, the twins had a birthday party to go to, but Brielle was sick so she stayed home. While at the party there was a man making balloon animals. Maddox got himself a blue dog. Britt suggested that it would be nice if he got a pink balloon animal to bring home for Brielle. He went and came back, but the animal he came back with was not pink, it was gray. When we asked him why he got a gray one and not pink, his response was that Brielle’s favorite animal is an elephant so that’s what he asked for, a gray elephant. Brielle was always just as thoughtful and would never accept anything you tried to give to her, unless there is also one for her “brother Maddox”. Their relationship was unique, they were not only siblings, they were twins, and they were not only twins, they were best friends...
We finally heard some news, unfortunately not the news we hoped for. The MRI confirmed that there was in fact a mass in Maddox’s ear canal which was pushing against a nerve causing him to have facial paralysis. The likelihood of this being cancerous at this point appeared high based on what the doctors were saying. But we still hoped that wasn’t what it was. There was no way, that our Maddox, just four years old, full of life, full of energy, acting completely normal despite his facial paralysis, acting as if nothing was wrong at all, had this horrible disease.
Maddox was admitted Friday into Saturday. His doctors and caretakers were simply amazing. Nursing staff knew Maddox as “The Bargainer”. If you wanted to put drops in his ear or check his IV, it was going to cost you! A trip to the toy chest, chocolate ice cream, or red popsicles would do the trick. The doctors spoke with Joey and Britt about possibilities, what to expect in the best and worst case scenarios. Unfortunately none of them with definite answers since the results of the biopsy would take a few days. Saturday he was discharged. While at home Maddox did what he normally did, jumped around on his indoor bounce house and watched Power Ranger movies. Maddox had loved Power Rangers for quite a while. One of my favorite stories of Maddox is a while back, Britt bought Maddox the Power Rangers morpher toy. The morpher is what they use in the show to transform into a Power Ranger. When Maddox received it he was so happy! But upon attempting to use the morpher, and not really turning into a Power Ranger, he was seriously disappointed. He just wanted to be the Red Ranger. One day his cousin gave him his old Halloween costume, the Red Ranger, and Maddox wanted to wear it every day. So of course for that Halloween, Maddox was the Red Ranger.
While waiting for answers, we hoped for the best but prepared for the worst. On Monday we received the news, Maddox had Rhabdomyosarcoma. A rare cancer that is commonly found in children. Although we mentally prepared as best we could, you can never be prepared for news like this.
If Maddox had no symptoms, if the mass didn’t push on his nerve causing his face to partially droop, if Britt wasn’t referred by a friend to see this amazing doctor for Brielle, if Brielle’s appointment with Mass Eye and Ear didn’t fall on that same week, if Britt chose not to bring Maddox with her to the appointment, if they chose to accept his diagnosis from back home, this all would have been unknown.
His treatment started fairly immediately. He had a port surgically placed in his chest for his treatments. Upon waking up from the port placement procedure, he was uneasy when he noticed this object in his chest. But his dad Joey assured him, that while he was asleep, he had a magic disc placed his chest, just like the one they saw from the Power Ranger movie the night before, and that he was now a real life power ranger. That was the end of his questions. He was a Power Ranger, and you couldn't tell him otherwise. He said later that day, “Mommy, you’re just a mommy. Daddy, you’re just a daddy. But me? Me a Power Ranger!”
Maddox was treated at Mass General Hospital for the next couple of months, receiving chemo and then radiation. He dealt with very little symptoms from it all, which gave us hope that he was responding well to the treatment and was going to beat this. During the time of his treatment, the COVID pandemic was in full bloom, so Brittany and Joey did as much as they could to keep Maddox and Brielle entertained during these especially uncertain times.
Maddox enjoyed going to the park during the week and spent most of his weekends at his grandparents and godparents house. Maddox had requested that his grandfather, Avo Frank, (who Maddox frequently called "JingleBum") build him a tree house in their backyard. So they carefully picked out the very best tree, and Avo Frank started building...with Maddox's help of course. The treehouse was complete in just a few weeks, Maddox loved to climb the rock wall, but his favorite part was the monkey bars. He tried and tried until he was finally able to climb to the end, and he was so happy once he did, it was now "soo easy."
During the summer, Maddox also loved going to beach with his sister. So Britt would bring them any chance that she could. They went to Onset beach frequently, but his favorite was East Beach in Westport because of the size of the waves. When he wasn't at the beach, he was in the pool. He loved going to his Tia Lee and Tio Mario's pool because there was a diving board. He would fearlessly jump off of the diving board, into the deep end of the pool, and then swim to the ladder to do it all over again. He also loved going to his Tia Maria and Tio Ron's pool because there was a big blowup slide that led right into the pool. There was rarely a weekend that Maddox wasn't in the water, where he loved to be.
Maddox also had a great love for animals, aside from a T-Rex, but his absolute favorite was a tiger. If he wasn't in the water he was at a zoo. Britt and Joey brought Maddox and Brielle to a number of zoo's in the summer. But Maddox loved the Franklin Park zoo, where he saw real life tigers.
Maddox's favorite show was the "Lion Guard" on Disney. He could recite every word of "Kion's Lament" and he would frequently ask Alexa to play it so he could put on a show for us belting out all of the words. If he wasn't watching the Lion King or the Lion Guard, he was was playing with his Ryan toys and watching his favorite movie, Trolls. Maddox would sing and dance away to the music, often referencing himself as "Maddox Branch Almeida".
Maddox also loved watching animal documentaries and playing "Guess the Animal" with his dad, Joey. One day, Maddox was at his Avo Ana and Avo Frank's (grandparents) house and he was watching a documentary where a lion was chasing after a baby zebra. His godmother Shana had the channel changed because she didn't want to see what was going to happen next. Maddox was very upset with his godmother when the channel was changed, because he really wanted to watch what was going to happen. The following weekend, still bitter that he didn't get to watch the rest of the documentary, he told her, "You know, I knew that the lion was going to eat the baby zebra, but I wasn't afraid and I wanted to see it." Maddox would frequently say things that were far beyond his time, he was old at heart, and now we know why...
You never would have known what Maddox was fighting if you were around him. He was full of energy and he never complained about his weekly, at times daily, Boston visits. In mid September Maddox was experiencing some symptoms from his treatment, and needed his very first blood transfusion, but other than that the symptoms were mild. He went to his godparents house like he normally would on the weekend, except this time there was a big surprise for him. His cousin Megan had asked the Red Power Ranger to go pay Maddox a visit. Maddox was so excited. He and the Red Power Ranger had a sword fight and a push up challenge, all of which Maddox won. Maddox ultimately defeated him, making him the new and improved Red Power Ranger.
In that upcoming week, Maddox still wasn't feeling like his usual upbeat energetic self but that didn't stop him from going to the park with his friends. Over the weekend, he woke with his eyes bothering him, so Britt and Joey brought Maddox to Boston. There they did some imaging and sent him home to be monitored. He went to his Avo Ana and Avo Frank's house the following day, there he played with his sister and cousin Adalynn and he rode his bike despite being slightly unbalanced.
Unfortunately, Maddox's symptoms grew worse rapidly. He went back to Boston the next day, and we eventually found out that Maddox developed a secondary cancer called Leptomeningeal disease, meaning the cancer had spread into his cerebral spinal fluid. Changes of developing this type of cancer was about 5% and the diagnosis, terminal. In just a few days, our once strong power ranger, riding his bike just days prior, lost his final battle.
Maddox was a strong, imaginative, and lovable young boy. And he will forever be our strong, fearless Power Ranger.
Maddox seeing a real life tiger.
Maddox seeing a real life tiger.