Remembering Kayden The Bravest Casey

Hi, my name is Spencer and I am starting this fundraiser for my son Kayden, his mom Megan, and his brother Abel. In 2020 Kayden was diagnosed with a rare form of cancer called Rhabdomyosarcoma. A cancer which forms in soft tissue and often affects children. It is a large mass on the left side of the skull putting pressure on his eye and ear. Inoperable because of its location. The tumor caused nerve damage in his face and he was unable to blink properly. To prevent his eye drying out and getting infected, his eye was sewn shut permanently. He went through a grueling 1 year round of chemo and radiation that ended in 2021 and was impossibly taxing on his little body. But he won. Tortured and beaten down but not beaten. A true hero.

Kayden began living as normal a life as possible. Though found himself being teased because of his eye. Children can be cruel. But he tried his best to push on and fit in as much as possible. Kayden liked to dance. He loved roll playing. Especially when it meant he got to wear a mask. Some days he was a police officer. other days he was batman or a DJ. But nothing compared to his obsession with Darth Vader. If you've ever seen Star Wars, you know Darth Vader was disfigured and disabled without his mask or suit. I think Kayden saw wearing masks and playing different characters as a way to hide his exterior so his character and personality wouldn't go unnoticed. Even if it was just an hour or so he could be himself. Kayden was a kind, thoughtful, smart, and hilarious child. Making people laugh was one of his best powers. And his laugh was the most contagious thing I've ever heard. I truly believe in my heart he was living his best life all thanks to his mom Megan, brother Abel, father Tim, and his step brothers Landon and Jacob. Something I will be forever grateful for.

In January of 2023, the worst news we could have gotten was delivered. Regular follow up scans revealed heightened activity in the same area and a biopsy confirmed our greatest fear...the cancer had returned. Stronger and more aggressive. The treatment plan outlined by his team of doctors include a high risk surgery (we were hoping to avoid), aggressive chemo and 7 weeks of radiation.

Once again a port was put in place and on February 16 he entered VCU to began his first 3 day round of chemo. On day 2 his port malfunctioned and the chemo seeped into his tissue causing chemical burns to his neck. Chemo was halted and he was put on morphine to reduce the pain of the burns.

He was released on February 22. Once home he refused to eat and drink saying his stomach hurt. He was in excruciating pain whenever he tried and later scans revealed that an ulcer had developed as a result of the chemo. More scans revealed that the tumor has spread to his nerves so surgery was entirely off the table. Even after the aggressive proton radiation the chances of the cancer being eradicated were less than 10%

While all of this was going on, he had to have multiple platelet and blood transfusions. Since his levels were always changing, they would have to pause and resume chemo constantly. And Megan of course, had another son that needed her as well. So, grandmother Debbie, and their aunt Kara stepped up. All 3 of them took turns either caring for Abel, or staying by Kaydens side. Let it be remembered that these 3 ladies are also irreplaceable heroes in Kaydens story. Eventually Kaydens counts returned to a normal level and so he was released for a few more moments of a normal life.

Eventually he was able to start radiation. After the first week of radiation they received some encouraging news. The radiologist reported that the treatment was exceeding expectations. The tumor was reducing in size. They decided to redirect the pinpointed target. Because the radiation can cause throat sores and bleeding Kayden had to receive a few blood transfusions and received regular injections to increase his white blood cell count. This meant a constant of poking and prodding.

On May 1, Kayden spiked a fever of 101.01 and was rushed to the ER. After two rounds of antibiotics and fluids, his temperature spiked to 102.7 and he was transported via ambulance from Stafford back to Children’s Hospital. He had to get another blood transfusion and was keep any liquids, including medications, down from severe mucositis caused by radiation. I forgot to mention all the treatment caused mouth sores that bled constantly.

On May 6, Although his platelet transfusions stabilized his white blood cell count, his mouth sores were not healing as quickly as hoped for, and radiation was postponed. Unable to ingest any liquids and receiving all of his nutrition through IV, Megan gave the go ahead for a feeding tube. Eventually the mouth sores healed enough that they could resume radiation and he only had 3 more treatments to go. The rest of his chemo would resume in Richmond.

Within the span of weeks, Kayden had battled infections, received numerous blood and platelet transfusions, had a feeding tube inserted, removed and replaced. Spiked another fever of 105. a full body CT scan was done and revealed some spots in his lungs that indicated an infection brewing but not a full-blown infection. He tested positive for adenovirus. The infectious disease came in and treated him for MRSA because he has a history of it. They added anti-fungal and continuing antibiotics. He still managed to complete 10 cycles of chemotherapy. Unfortunately, the tumor didn't shrink as much as anticipated so once he healed, he had another MRI and biopsy to determine the next course of action.

In December, Megan was informed by Johns Hopkins that "we have hit the end of the road." The only option she was left with was to slow the progression down with more chemo and radiation, or make him as comfortable as possible. All the fighting he done had led to "the end of the road." Kayden figured out something was wrong. Megan basically asked him what he wanted to do. Even after the chemo and radiation almost killed him last time, this brave child said, "if there's a chance I'll live then I want the chemo and radiation. But there was literally 0 chance that he would live. Timeline was "weeks to months."

Megan and the boys met with a councilor to help explain the news. During this conversation, Kayden explained that he pretty much "already knew," and had just one question. "Can anything be done?" The answer was obviously no. He said "okay." His younger brother, not so accepting, exclaimed that he was "angry with God."

Kayden came home to once again live the best life he could. During the last 6 weeks, I spent as much time as possible with him. We played video games. We watched movies. We built toy skateparks and learned tricks together. We played Uno. We played Sorry. We joked. We laughed. We went to Great Wolf Lodge and we became wizards in between bouts of swimming in the wave pool. We went to Florida and visited Lego Land and Disney. He got to meet Darth Vader and Chewbacca. All great things. Unfortunately, great things do come to an end.

After receiving the news, he went back for 2 scans I believe. 2-3 weeks apart. On the first scan, the tumor had grown roughly another 2 cm. And on the second scan, another 2. It felt as though just receiving the news made the tumor grow more aggressively. The tumor began pushing through his nose, his mouth, and down his throat. I have 2 pictures on my phone. One, the day we flew to Florida. Showing a smiling face excited to go to Disney. And another picture taken 8 days later. With a tumor growing out of his nose the size of a grape and the other part of the tumor the size of an ice cube penetrating is inner cheek making it almost impossible for him to talk. 8 days. Which means the tumor was growing back into his brain just as fast.

To make him a little more comfortable, they operated on his nose and cheek to remove the front part of the tumor. Obviously that's all they could do. Once the tumor started pushing on nerves to heavily, he lost the ability to walk without help and could not talk anymore. he typed everything out on his tablet. Once this happened, I told my mom, my grandmother, and my sister that we should bring him to see them since grandma is in a wheelchair and bringing her to him was impossible. Reluctant, he agreed to make the trip. I watched as he held my arms and wobbled his legs through the living room to the couch where he plopped and was given overdue xmas gifts and hugs. Something I learned about Kayden was that no matter how bad he was feeling, he always smiled, without fail, for every picture. The most touching part of this trip was him getting see his great grandma. Watching her comb his hair with her fingers like she used to do to me brought me to tears.

By the following weekend, he had lost his ability to stand completely, and lost the use of his right arm. His aunt Mimi came by to visit and brought him pictures of him as a baby and more leggo sets since he loves leggos. One of the pictures she brought was me as a child. As I played next to him she asked Kayden, "who is that?" He reached back and patted my head. I stayed with him that Saturday February 24th and watched SpongeBob with him until he fell asleep. His breathing labored. I could tell he was getting weaker. He was still asleep when I kissed his head and told him I loved him for what would be the last time.

On Wednesday February 28th, Megan texted me saying that he wasn't able to move his head anymore and asked if I could come this week because her back was hurting and needed help lifting him. I said "of course I will be there tomorrow, Friday, and Saturday." It would be too late.

02/28/2024 10:15PM

Kayden passed away as peacefully as any of us could have hoped for. In his sleep, he just simply stopped breathing. No more pain. No more suffering. He had been able to say goodbye to everyone who loved him. He just went. Forever 9 years old.

The reason I write this and the reason I ask for help is because for the better part of 6 years I have watched Megan care for a sick child, and another child. I have watched her balance work and life and care for the two most precious things in her life. And when Kayden got too sick and needed full time care, I watched her take time off from work to be by his side. I watched her younger son grow resentful toward her for not being able to give him the attention he needed since his older brother needed full time care. I have watched her make sacrifice after sacrifice after sacrifice to give every ounce of life she has into being the best mother any child could ever ask for. She was strong for her children and cried when she was alone. Rarely does she ask for help. I've seen her try to carry 4 suitcases and push a wheelchair. She has spent every dime she has making sure they have a place to live and giving them everything they need and desire. Kayden will always be our superhero, but Megan is the definition of a supermom. selfless, caring, loving, kind, funny, and unflinching in the face of despair. She has always carried on and she has always done what was necessary to be a supermom.

Giving her all and losing a child, Megan deserves a chance to get back on her feet. She deserves an opportunity to not worry about bills, groceries, providing financial stability, and an opportunity to breath. She deserve relief. The reason for this gofundme is so she has an opportunity to do that. To relocate if she wants to. To find the job that she wants. We also want to make sure that she can give her son the Celebration Of Life that I know she wants to give him. This go fund me will help her do that, and start picking herself back up.