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Our Families

Aiden’s Joy

In the months before Aiden’s diagnosis, something just didn’t feel right. Once a thriving and energetic toddler, he began to show signs that, at first, seemed minor—but his parents knew better. It was the end of the COVID era, and Aiden, who had rarely been ill, suddenly came down with two back-to-back upper respiratory infections. One episode landed him in the emergency room for breathing treatments. Not long after, while giving him a bath, his parents noticed several swollen lymph nodes at the back of his head. Doctors reassured them it was just a response to recent illness.

Then came Christmas Day, 2021. Aiden slipped on a piece of wrapping paper and fell. From that moment on, he started to limp. X-rays showed nothing concerning, and the limp was chalked up to a benign condition—viral toxic synovitis. But the limp didn’t go away, and soon their once-active two-and-a-half-year-old was unwilling to climb stairs on his own. Not only that, but the swollen lymph nodes had returned.

Both of Aiden’s parents are physician assistants. Their concern deepened. They sat down and wrote an email to Aiden’s pediatrician, outlining everything they had observed and requesting blood work. They were seen the next day, a Friday. The labs were drawn “just for reassurance.”

That night, a snowstorm blanketed their town. Aiden, who typically disliked the cold, insisted on helping his mom shovel. He lasted just a few minutes before going back inside. Shortly afterward, the family’s world turned upside down.

An alert came through: Aiden’s lab results were in. His parents opened them together, sitting side by side in the bedroom. White blood cells—high. Platelets—low. Red cells—low. Then came the word that stopped them in their tracks: blasts — 68%. They immediately called a close friend who worked in pediatric hematology/oncology. “Please tell me you can find blasts in something other than leukemia,” they pleaded. Her reply came through, breaking: “Please tell me it’s not Aiden.”

The next hours were a blur. Aiden was rushed to the emergency room. Tests were repeated, and though his parents already knew in their hearts what was coming, they hoped for a mistake. But by that night, their worst fears were confirmed: Aiden had leukemia.

From that moment on, life was divided into “before” and “after.”

Aiden was admitted immediately. A pediatric oncology attending met them in the smallest room they’d ever seen and said simply, “This will be a long road, and at least one of you is going to have to quit your job.” They decided Danielle would keep working full-time while her wife, Nikki, stepped back to manage care.

At the time, COVID protocols were still strict. Only one parent was allowed with Aiden at a time, with one switch per week. As a “courtesy,” they were allowed to stay together that first night. It would be weeks before they were all in the same room again. The following morning, Aiden underwent surgery for a PICC line, his first bone marrow biopsy, and a lumbar puncture. Chemotherapy and high-dose steroids began that very day.

The early weeks were devastating. Their cheerful, vivacious toddler was fading before their eyes. He could no longer walk, or even sit up. The steroids altered his appearance, and the chemo sapped his strength. When his port was finally placed and they got to go home, it felt like a small victory. But that relief was short-lived.

Just days later, they noticed something wasn’t right. The surgical site hadn’t been properly closed. Aiden developed sepsis and was readmitted for nearly another month. It was in those terrifying, sleep-deprived days that his parents learned to advocate more fiercely than ever before.

Despite the pain, the isolation, and the uncertainty, Aiden found joy. When he entered the maintenance phase of treatment, his family made a choice: they wouldn’t just survive—they would actively live, and choose joy whenever we could. That’s when they took his wish trip to Disney World, about a year after diagnosis. Aiden had adored Mickey Mouse since before he could talk, and meeting him in person was pure magic. That moment lit a spark.

From then on, they packed their days with outdoor adventures—visiting every zoo and amusement park they could find. These weren’t just fun outings. They were acts of defiance. Reclamation. A way of giving Aiden back the childhood that cancer had tried to steal.

And Aiden—Aiden was the light in all of it. He is known for saying, “This is the best day ever!” whether he’s hugging Mickey, running at the park, or feeding goats at the zoo. His joy is infectious, and his zest for life unwavering.

Aiden’s journey hasn’t been easy. There were many setbacks, but also profound gifts. One such moment came unexpectedly—in a hospital pantry at 3 a.m., during a second inpatient stay. Danielle had gone to warm up food, and returned whispering, “I think you need to go talk to the woman in the pantry.” That conversation sparked a friendship that would become a lifeline.

Their kids—both bald, both battling—were soon side by side in hospital beds with superhero capes tied to their shoulders. Together, their families weathered the storm of treatment, and from it emerged a community.

That community grew when Aiden began attending The Morgan Center, a preschool for children with cancer. There, Aiden didn’t just learn and play—he thrived. Surrounded by peers who understood his journey, he found belonging. His parents found support. They were no longer alone.

What makes Aiden unique isn’t just his diagnosis or the battle he’s fought—it’s who he is. From the moment he first smiled at five weeks old, he has radiated joy. Curious, enthusiastic, and fiercely compassionate, Aiden is the kind of child who stops mid-play to ask why the moon changes shapes or how long the biggest lizard in the world is. He adores his family, offers hugs freely, and holds hands with those he loves most. He’s deeply connected to animals—and obsessed with dinosaurs, especially the lesser-known species (which he will gladly correct you on). His beloved “stuffies” go with him everywhere, a portable piece of comfort and security.

Through all of it—procedures, pain, long hospital stays—Aiden has never lost his smile.

Recently, his parents have found joy in the milestones that once felt impossible. Watching him run with other kids. Seeing him climb the playground alone. Laughing with friends. Riding roller coasters. Starting real school. These are not small things. For a family who’s watched their child struggle to sit up, they are everything.

What surprised them most wasn’t just Aiden’s resilience, but the stark reality of how little support exists for families like theirs. The smiling commercials for pediatric cancer, with bright playrooms and full support teams, didn’t reflect their lived experience. What they got was a folder of flyers, revolving-door social workers, and an overwhelming sense that it was up to them to figure it all out. The emotional toll, the trauma, the life after treatment—none of it was discussed.

But in the spaces left empty by the system, they found something even more powerful: each other. Their community. The families they met in hospitals, preschools, and retreats.

One such retreat was hosted by Rett’s Roost. There, they found the space to breathe. To process. To heal—not just as caregivers, but as people. Surrounded by others who truly understood, they felt seen. The retreat gave them something they’d been missing: permission to reflect, to feel, and to begin again.

Today, Aiden continues to move forward. His light is unshakable, his spirit a constant reminder that even in the darkest chapters, joy can be found. His story is one of resilience, but also of connection—how, in the midst of fear and pain, love and community can shine the brightest.

Ava Rose

Ava Rose was born on August 2, 2014. She was a very healthy, playful little girl, growing and learning in all the ways toddlers do. However, when she was 22 months old, she slowly began to change in ways only a parent could notice. She seemed slower and less energetic. She began waking in the night, having low-grade fevers, and eventually started scooting everywhere, instead of her usual walking. Her first ever sick visit was brushed off as a common virus, which the doctors thought may have caused sore muscles. Leanne, Ava’s mom, was advised that if she wasn’t feeling better in 7-10 days to bring her back; by day seven, she had not improved at all. 

At their follow up appointment, they were immediately sent to the local hospital for scans. That was the day Ava’s family learned that their first born daughter had cancer, at which point their whole lives would change. Later that day, they were admitted to the children’s oncology floor and would receive a diagnosis of stage 4 Neuroblastoma.  At that time, Ava’s younger sister, Addalyn, was only 6 months old. Leanne recalls that “There are no words for the utter devastation that a parent goes through hearing the words “your child has cancer”– It’s as if the whole world stops and all you can hear is your own heart beat.” 

After diagnosis, Ava underwent the standard treatment for Stage 4 Neuroblastoma. Over the next 15 months, she would undergo a series of chemotherapy, surgery, radiation, and immunotherapy.  She also had a tandem stem cell transplant at Golisano Children’s Hospital in Rochester, NY. Each transplant required Ava and Leanne to be away from their home, their family, and their pets for 30 days. 

While Ava did reach the point of NED (no evidence of disease), she ultimately relapsed at the end of her full treatment plan. Ava’s medical team decided to use high dose chemotherapy to attempt to treat the minimal relapse. Because Ava’s body had already been through so much toxic treatment, the high dose chemotherapy was too much for her healthy, unaffected organs. Her relapse treatment started shortly after her 3rd birthday; she never left the hospital after the chemotherapy was administered. Ava would spend another 30 days in the hospital, the last three of those were on life support in the PICU. Leanne says,”We were able to snuggle her, rock her, sing to her, make her a beautiful playlist of gentle music, and help slowly transition her to a world that we now live without her…” Ava passed away at the age of 3 on September 16, 2016. 

During Ava’s last days, her family limited visitors and unnecessary medical staff. They kept their space calm, dark, and filled with beautiful sounds. They had the softest blankets for her and arranged their beds right next to Ava’s. The Child Life Specialist, in coordination with  local Non-Profit groups, helped them create a fingerprint necklace of Ava’s pointer finger. They also made a ceramic casting of her sweet little hand and foot. Ava’s family made sure all end-of-life decisions were made ahead of time, so that they did not have to worry about paperwork during their final days with her. The main goal was to keep Ava pain free, which they were able to accomplish. 

Some of Ava’s favorites were Mickey Mouse, painting, and flowers. Her favorite stuffed animal was her Winnie the Pooh stuffy. She lived a life full of love and wonder. Leanne recalls that, “We made it a point to make every day more beautiful than the next because she deserved that. She deserved so much more than what she was given. Our family has suffered an immeasurable loss that we work daily to recover from.” 

Since Ava’s passing, her family has learned to slow the pace of life down. They try to see more sunsets and snuggle longer. Addalyn (Ava’s sister) has taken an interest in art, enjoys being in nature, and animals. The family continues to talk about Ava on a daily basis. Leanne says that grief has been complicated– different strategies have worked at different times. Individual counseling and group therapy have been helpful, as well as meeting others who have experienced similar types of traumatic diagnoses or loss. Ava’s family also makes time to go to the ocean, create beautiful gardens, and paint when they can. Leanne has also found that books about grief have also been essential in learning that what they are feeling is normal, in a world that feels so abnormal.

“Rett’s Roost is a loving and supportive program that makes us feel understood, heard, and supported in all the ways we need. They are so intune with what is actually helpful. We have created long standing friendships and have also been able to refer other families to them as well. I felt blessed to stumble upon a last minute opening for our first retreat. We had 3 days to get ready to go and I’m so glad we made it happen.”

Charlie’s Hope

Charlie was diagnosed with DIPG (diffuse intrinsic pontine glioma) in February 2016 at the age of 14. Charlie was an avid runner; whether it was on the trails in the woods, with the cross country team, on the lacrosse field, or down the hall to get his socks, he ran. Charlie’s mom, Lynda, says that It was in running that he first noticed something was wrong. His balance was off, his gait changed, he was dizzy and nauseous, so he went to the doctors to get it checked out. Charlie was diagnosed with a type of terminal brain tumor called DIPG, which is an inoperable, aggressive tumor in the brainstem for which there is no cure and only experimental treatments to buy time. He was given 6-18 months to live–all his hopes and dreams for the future, gone. From the beginning, he knew he would not survive this tumor, but always had hope for more time than was given at diagnosis. 

Charlie refused to let cancer steal his spirit.  He decided to take charge, and explore treatments to give him some time, and hope. Charlie was active in his medical care, attending several DIPG research conferences and participating in many clinical trials. He was also a committed advocate in the DIPG community, reaching out to those newly diagnosed and offering peer support.

He had radiation and then participated in several clinical trials, fully aware it was not likely to benefit him, but may help others. He said, “I’ve lived my life, but what about that 4 year old?  They deserve a chance to live.” He attended DIPG symposiums, met with researchers and toured labs, listened to neuro-oncologists and researchers from around the world describe the research being done, and heard time and again about the need for tissue samples.  Charlie felt strongly that he wanted to contribute to research by donating his tumor and having his cells be part of research. 

Charlie was a teenager, therefore he was fully aware that he had a terminal disease, and was very much involved in all of the medical decisions, as well as his end-of-life planning. One day on the way home from their weekly hospital visits, Charlie said he wanted to be buried under a tree. Nature and the environment were always so important to Charlie, and he wanted to leave as little impact as possible when he died. 

Charlie loved his family, especially his big brother and sister. He was always his mom’s “little buddy.”  He never stopped moving, whether it was tricks on scooters, mountain biking, running, basketball and his favorite sport, lacrosse. Charlie loved getting a root beer after games with Dad and playing catch in the backyard. He may have slowed down after diagnosis, but he found new ways to love life in bird watching, protecting the earth, being near the woods, flower photography, and music.

Charlie beat the odds and lived 30 months after his diagnosis. He left his earthly body in August of 2018 at just 17 years old. To honor his wishes of donating his tumor to research, the family was able to work with the organization, Gift From a Child. They visited Dr. Monje and her lab, learned about the important research being done, and saw Charlie’s cells under a microscope. In this way, they were able to honor Charlie’s dying wish, that maybe DIPG would one day be something a child could live with, not die from.

After a couple of years exploring the many ways to carry her grief, she was grateful she found Rett’s Roost. She then attended an online bereavement support group and later became a volunteer for Rett’s Roost. Lynda says that, “We have found that compassionately supporting other bereaved families helps us carry our own grief, and our child forward. While we would not wish anyone to know this pain, we know far too many others do and are committed to help if we can. Connection with other families has been the biggest help in all of this.” 

Deana, Rett’s mom, had this to say about connecting with Lynda in 2020, “Although I never got to meet Charlie, I feel as though he sent his mom to us, knowing we would connect deeply. And that we did. Lynda’s presence in our online groups is so compassionate and comforting to newcomers, and having her help at a retreat in 2021 solidified our friendship. Although our sons had very different cancer and life experiences, we are certain that Charlie and Rett brought us together, and that somewhere, they are together too.”

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.