Skip to main content

Our Families

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.