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Our Families

The Redmans

When Onyx was just 5 months old, his mom, Morgan, noticed something wasn’t quite right–he was not keeping any breast milk down and seemingly staring off into space. Because it was during a peak time of COVID infections, February 2021, the Redmans were told it wasn’t worth the risk of bringing Onyx to the doctor and to continue to monitor him from home. But after reporting to them that his head seemed larger, the doctors finally agreed to see Onyx in person.

At the pediatrician’s office, a measurement was taken of Onyx’s head and it was confirmed there was swelling. A CT scan showed hydrocephalus and a 6cm tumor on his brain stem. Kris, Onyx’s dad, and Morgan rushed him to Boston Children’s (since waiting for the ambulance would have taken several more painstaking hours) and he was prepped for surgery to remove the tumor the next day. The diagnosis was dire–an Atypical Rhabdoid Tumor (AT/RT) is a rare, fast-growing brain and spinal cord cancer primarily found in young children.

His primary treatment plan consisted of 3 rounds of high dose chemotherapy with a stem cell transplant. The Redmans then started using a high dose cannabis protocol and Onyx was considered in remission for almost a year. During this time, the Redmans were able to participate in a family retreat with Rett’s Roost at Rolling Ridge with 6 other families. Although it was a wonderful experience, there were concerning signs of Onyx feeling unsettled.

Soon after the retreat, in July of 2022, a new 2cm tumor was discovered and he underwent another tumor resection, with a plan to start radiation after he recovered. However, while waiting for the radiation machine to be available, Onyx’s tumor came back for a third time. That tumor was again removed and radiation treatment started 3 days later.

Onyx made it halfway through his radiation treatments but began to have right-side weakness. In September, he got to attend another smaller retreat in Ogunquit. During this one, he celebrated his 2nd birthday, and his entire Maine family showed up at the retreat. It was a beautiful day that included a foam party. But his parents knew that something wasn’t right.

The next day, an MRI showed that the tumor had grown rapidly to 10cm, covering almost the entire left side of his brain. All treatments were stopped and the family got to take one last trip to Alice’s house on Cape Cod to honor his life. Onyx was then brought home on hospice care where he lived three more weeks.

Moments before Onyx took his last breath they had him very comfortable in their bed trying to help him with his breathing. Onyx’s big brother, Jade, all of a sudden bounded through the door and started jumping around the bed saying ” Let’s play! Let’s play!” Kris and Morgan were both trying to rush Jade out to keep Onyx as calm as possible and when they went back to check on Onyx he wasn’t breathing. After what seemed like a lifetime he took a great big gasp for air. That was Onyx’s last breath. It was October 10th, 2022.

One thing that really helped Onyx through treatment is music. He loved being serenaded and his mom says they had music playing at their house 24/7. One of the music therapists made Onyx a CD with his favorite songs, which helped him stay relaxed during procedures.

Onyx’s parents, Kris and Morgan, and their four year old son Jade have struggled in now being just a family of three. “It’s just devastating, we were so happy to have two boys close enough in age that they would be best friends for life,” Kris said. While Kris and Morgan were trying so hard to save their dying son, their other son, who was in an important developmental stage in life, was suffering too. Trying to keep them in contact and still care for Jade’s needs felt impossible at times. It was tough, in all aspects of life–emotionally, mentally, physically, and financially. However, their family unit has become stronger as they now know that they can overcome anything together. And they recently made a big move to Arizona to start fresh and get a little more sunshine.

Their advice to parents facing the end-of-life of their child is this, “We set up a meeting with all of Onyx’s different care teams and put all the options out on the table so we could give Onyx the best care for his final days. A meal train was set up so we didn’t have to think about meals and hospice care helped with pain management and comfort medications. We had Onyx’s heart beat recorded by the EMT which we keep dearly for it is a memory of him still being here.” They also told us that they’ve found some relief in their grief by looking for signs from Onyx, exploring beautiful natural places, and continuing to share memories with each other and their community.

Kris and Morgan also shared their gratitude with us, “Rett’s Roost has gone above and beyond to make us feel that we are not alone in this crazy world of cancer and child loss. There are times when I think back and some of the happiest memories I have of Onyx are at the retreats that we attended. We’ve met some of the greatest families, who like us, have been through one of the worst tragedies a family can go through in life. They [Rett’s Roost] take the burden of losing a loved one, or someone who is still fighting, and make things a little easier.”

The Strong Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

During pregnancy there was no concerns that there would be anything abnormal. Caden was born at 2:30 in the afternoon on Saturday July 2nd 2017. He was two weeks early and weighed 10lbs 3oz. Caden had a skinless mass on the left side of his neck that went from his shoulder to just below his ear. Before tests were completed, doctors initially assessed it as a rare form of birthmark that could be removed with surgery. On Wednesday July 5th we found out how large the primary tumor really was. It was wrapped around the carotid artery, went up into his jaw, wrapped around his shoulder and went down below his ribcage. At just six days old we were told Caden had cancer and it was everywhere. Caden had the primary tumor, and metastases in his left lung, lymph nodes, in the left armpit, both adrenal glands, and multiple in his liver, the largest being the size of a grape. Caden was diagnosed with Atypical Teratoid Rhabdoid Tumor (AT/RT). ATRT is one of the most aggressive cancers and the most aggressive the pathologist had ever seen. ATRT is also known to start in the brain but Caden’s cancer had not and never spread to the brain. One of the Oncologist sat down with us and gave us two options. Start chemo right away or take Caden home and live out the remainder of his life. We started chemo that night.

How did their treatment progress?

In the beginning Caden’s cancer responded extremely well to chemotherapy. The tumor on his neck shrank rapidly. Caden’s cancer was unique from most, we had a visual of how the treatment was working because the cancer was on the outside of his body. We spent the first month of Caden’s life in the hospital before we were able to take him home for the first time. His first adventure outside the hospital was to the Jacksonville Zoo. It became a waiting game as Caden’s counts would drop and recover. His cancer was so aggressive that as soon as his counts would begin to rise we could see the cancer growing. It was always a race against the clock. Seeing the effectiveness of the treatment and Caden’s rapid recovery from chemo fortified our belief that Caden would beat this. All the metastases except for the largest in the liver and the adrenal glands disappeared. In September we were in the process of moving to New York and Caden was then treated in Albany. At about three months old is were we started to lose control. On October 17th the nurse had mixed up the chemotherapy and gave Caden three times as much chemo in a few minutes than he was supposed to get over the course of two days. All we could do was hope that Caden would pull through. The side effects were awful and some were permanent because of the mix up Caden was delayed a whole month. In between recovery Caden was finally able to have surgery to remove the tumor on his neck. We initially believed that was the only active cancer and we had planned to have another surgery to remove Caden’s adrenal gland when the Kidney Specialist was available. When we did more images on the adrenal glands we discovered that the tumor in his adrenal glands had grown and a spot remained in the liver. Instead of surgery we started chemotherapy again in hopes to kill the rest of the cancer. We completed the five days of chemo and were able to be home as a family for Thanksgiving. It was the only holiday Caden was able to be home and we felt everything was normal. Things would quickly turn for the worse in just a few weeks. We had finished two rounds of chemotherapy and the Oncologist could feel Caden’s liver, which meant chemotherapy was not working. Caden developed a fever and had a bad infection in his Broviac line. Our only option was a trial drug in Boston but Caden had to be six months old before he was able to qualify for the trial. Three weeks had elapsed since Caden’s last treatment and he still had another 10 days before he was six months old. We all agreed Caden didn’t have that long to wait, so we agreed on a preliminary chemo treatment. The preliminary chemo would actually delay us starting the trial till his body was clear of the drug. We were scheduled to start the trial on January 25th. Every day that passed became harder and harder for us to control his pain. We spent as much time as we could as a family of four not knowing what the next day would bring. The weekend before we were about to start the trial, our fears became reality. Caden hadn’t urinated all day so we called Caden’s Oncologist. He was very concerned and told us to go straight to Boston. Caden’s kidneys and liver had started to shut down. They tried a bunch of different things in hope to help Caden’s breathing and levels. We had to make the impossible decision to stop all treatment and just keep him comfortable. On January 25th at 11:00 PM Caden passed away in our arms.

What did this devastating tragedy feel like for your family? What was early grief like?

Everything felt unreal and everything happened so fast. Treatment was work then all of a sudden it was not and Caden was gone. There was nothing I could do to save my baby. There was no real treatment to help him fight. I felt completely powerless and defeated. Early grief we spend a lot of time outside and hiking mountains. I also spent a lot of time baking and cooking. Being able to talk to someone that has also lost a child and working through my grief with her is more helpful then she will ever know. I could talk to her about the hard stuff and she wouldn’t shy away.

What helps you in your grief now?

Grief is like a wave. As time passes the length between each wave becomes farther apart. But when that wave comes it can hurt and knock you over just like in the beginning. We still like to spend a lot of time outside and finding new adventures. We also like to remember Caden by hatching and releasing butterflies on his birthday every year.

If you have other children, how did they handle the whole experience? If it’s been over a year, how are they now?

At the time Adelynn was 2 years old. We have always been very open and honest with her. She knew that her brother was sick when he was born. When things started to spin out of control we worked with the team in Boston on the best ways to talk to her about Caden’s death. Adelynn was able to hold Caden and say goodbye to him at the hospital. Adelynn is now 5 and still talks about her brother often. Her Mimi made her a “Caden Bear” out of one of Caden’s PJs and she loves him. She still becomes very sad and misses him often.

What made Caden unique?

Caden was a gentle soul. He always had a smile and was so happy all the time. He loved anything that made crinkle noises. He had the most beautiful blue eyes and had a stork bite the shape of a V right in the middle of his forehead.

What is your favorite memory or most positive outcome of attending a Rett’s Roost Retreat?

I was beyond nervous to attend a retreat. I was not ready to open my heart to new people and I was scared. I had not opened up and shared Caden’s story out loud with anyone on a personal level. I just felt like family when I walked through the doors. It was so easy to talk to everyone there. They all wanted to hear about our son instead of being afraid to ask. I am blessed to have met the families that attended the retreat with us.

The Bottari Family

When was Seth diagnosed with cancer?

Seth was preliminary diagnosed at 5 months in December of 2016, but his diagnosis of AT/RT (Atypical teratoid rhabdoid tumor of the brain) was not confirmed until mid January 2017.  Seeing the dates now does not seem like a long time but it felt like an eternity in the moment.

How did his treatment progress?

Seth’s treatment was slow to start due to the amount of time it took to get a definitive diagnosis.  We spent 6 weeks from the time they told us he most likely has this really terrible and aggressive cancer to when we actually received confirmation and his treatment followed the same path.  If there was a bump in the road Seth hit it!  Beginning with the wrong type of central line being placed, to fevers, RSV, and other bumps along the way Seth didn’t begin treatment until February 3, 2017.

His type of treatment was aggressive and they told us it would be difficult and Seth would be in-patient for weeks on end.  He did defy all odds and made his way home pretty regularly but we also spent a fair share of time in the hospital. Seth was a trooper through it all and for the majority of the time had a smile on his face.

In early June 2017 we got amazing news that the treatment was working and the tumors in Seth’s brain had shrunk.  They were so elated with his reaction to treatment that they were going to begin preparing Seth for the stem cell transplant phase of treatment.

As parents we were so excited.  Our son was going to make it, and although the stem cell transplant process is hard and grueling on everyone involved it was going to keep Seth with us so we were ready to move full steam ahead.

But Seth’s cancer had different plans, during the testing needed to move toward stem cell transplant a large tumor was found on Seth’s right kidney; and it had grown during the time that Seth was receiving chemotherapy.  Why his brain responded and his kidney didn’t is something we may never know.

From the time we found out about this as parents we wanted to enjoy our time together as a family.  Keeping Seth as comfortable as possible for as long as we could have him with us.  However, the option to remove Seth’s right kidney was posed to us as potentially giving him another possible 18 months.  How could we possibly refuse that opportunity?  They weren’t even sure this was AT/RT so we went for it.  Seth’s right kidney was removed and he recovered nicely.

It was 2 weeks later that we were doing additional testing to determine next steps for Seth when an MRI revealed that the tumor had grown back in the same place to half the size it was previously, he had spots all over his lungs that were too numerous to count and a concerning spot on one of his vertebrae.

Devastating doesn’t even begin to describe how we felt.  We had his kidney removed to give him, give us, and our family more time and now we’re right back in the same devastating position.

At this time we took Seth home for as long as we could but ultimately decided to return to the hospital when things got worse because we didn’t want him to suffer.  We had a wonderful few days as a family having sleepovers at the hospital and just being together as a family of four.  Seth ultimately took his last breath on August 30th in my arms.

What did that devastating news feel like for your family?

Through the whole journey we were hit so many times with devastating news.  The initial mention of AT/RT – how can our perfectly beautiful and healthy baby boy have this terrible disease with no sign of anything.  How will we do this financially, emotionally, physically?  How will this effect Sadie?  Could she have it?  Do we have it?  So many things spiraled through our minds.

Then realizing that you couldn’t save your son.  A terrible feeling that no parent should ever have to experience.

And lastly having your infant son take his last breathe in your arms.  Something I would never wish on anyone but also something I wouldn’t change for a second. I was there to bring him into this world and I was there to ease and comfort him on his way out.

What were some of the things that helped you get through the initial months of diagnosis and treatment?

Our friends, family, and employers really rallied around us from the start and haven’t stopped.  In the beginning it was just spending time together, meal drop offs, and eventually it grew to financial support, ensuring that Sadie was well cared for when either of us couldn’t be with her, dropping everything at an instant when we had to take Seth to an appointment or the ER.

What were some of your child’s favorite things to do? Did he have super heroes, sources of comfort & joy?

Seth was so young through all of this that he couldn’t tell us what he wanted to do but he always wanted to be held and snuggled, he loved his swing and rocker, his eyes lit up when Sadie came to visit or when they could play together, he loved throwing his toys on the ground and making us pick them up over and over again, he listened to music with my husband, and his favorite toy was the syringe for his G tube.

What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?

By far, it is the lasting friendships formed and finally having people who understood what we were going through. People who had those same hard questions and terrible thoughts running through their minds.

What is the one thing you could tell everyone about childhood cancer?

Let’s be honest it sucks!!!  You never think you’re going to be the one effected by this terrible disease until you are and it’s heartbreaking and life altering.  But despite how awful all of it is, the diagnosis, the treatment, the sicknesses, the unbearable grief, there were a lot of good times and memories too.  The circumstances weren’t the best but we enjoyed time as a family as often as we could and made a second family with the staff on the 9N floor at Boston Children’s Hospital.  We really got to see how generous and loving people could truly be through what will hopefully be the worst experience of our lives that we carry with us each and every day.

The Mortimer Family

Brady was born on June 23, 2009 in Manhattan, Kansas at Mercy Regional Hospital. A healthy and happy 7lbs. 8oz. baby boy. At 2 1/2 years old, Brady started complaining of headaches and eye pain followed by vomiting almost everyday. Katy, Bradys mom, took him to his primary care physician and she said it was just a virus. Time went on and his symptoms worsened. Bradys family was anxious and needed answers so, they were VERY persistent and demanded a CT scan. The news was horrific, they found a massive tumor in his brain.

That same day Brady and his mom were in an ambulance on the way to Children’s Mercy Hospital in Kansas City. Two days later, Brady underwent a very dangerous 8 hour long brain surgery where 98% of the tumor was removed. Brady had an amazing recovery with no long term effects, delays or complications. The next day the biopsy report came back, it was AT/RT cancer, one of the harder forms to treat. The family was so emotionally heartbroken, shocked, confused, filled with so many questions and decisions with Bradys treatment.

With Brady having a less than 20% chance of survival, the family contacted St. Jude Children’s Research Hospital in Memphis, TN and were quickly accepted. Shortly after arriving at St. Jude, an MRI was done of Brady’s brain and spine. Sadly, six tumors had grown, two of which were on his spine. Brady underwent two rounds of regular chemotherapy. Another MRI that followed found that two of the six tumors had grown. A different treatment of chemotherapy did nothing to stop the cancer. Brady was welcomed into heaven on August 4, 2012.

Brady’s brother Andrew was only 7, but he held Brady in his arms as he passed away. Andrew is dearly devoted to spreading the word about childhood cancer awareness and he will speak to large groups about his brother. He is an honor student and loves football and plays the piano.

Andrew and his mom, Katy, and dad, Jason, have spent the last three years honoring Brady by raising awareness about childhood cancer. They have created Brady’s Fund and a successful toy drive to bring hope and relief to the kids at St. Judes hospital.

You can help support their travel expenses to Rett’s Roost this summer here:
Cancer Families Fly Free