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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 Bragdon Family

Maya was a very sweet, funny, and happy little girl. She loved playing with her twin sister Abby, watching Sponge Bob, and spending time with family. While homeschooling during the pandemic, Maya’s mom, Kim, noticed that her hand was shaking while using a mouse. A few days later, she lost her balance and fell, which seemed odd. Maya had recently had major dental surgery and her parents wondered if her new symptoms were at all related; however the MRI showed the worst possible news–an inoperable brain tumor called DIPG (Diffuse Intrinsic Pontine Glioma).

On December 4, 2020, Maya’s parents were told that DIPG was a terminal diagnosis and that the only treatment was radiation, which is considered palliative. Kim recalls how she felt that day, “There are no words when a doctor tells you that your child will die and there is nothing we can do to save her. How can I, as her mother, not do ANYTHING to help my baby? Until this day, I still have no words for that moment but it is burned into my memory forever.”

After diagnosis, Maya underwent 30 rounds of radiation. The treatment was considered successful as the tumor shrunk and Maya regained functionality. After a very significant battle with their health insurance company, Maya also began an oral chemotherapy trial called ONC201. This trial required the Bragdons to travel from Massachusetts to New York City on a monthly basis from February through June of 2021. Maya’s symptoms remained relatively stable until July 2021, when they returned with a vengeance as her tumor progressed. Maya underwent a second round of radiation, which helped her regain some mobility, but she sadly continued to decline. Maya passed away peacefully in her sleep on January 9, 2022 at the age of 7.5.

The Bragdon’s attended a Bereavement retreat in June 2023. Kim says that the friendships she made through Rett’s Roost has made them feel so loved and she also really appreciates how welcomed her family felt by Jim and Deana at the retreat. Kim’s advice for other parents facing a terminal diagnosis is to spend as much time with your child making them happy, and make sure their last days are filled with joyful moments and love.

The Austin Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.
In the spring of 2019, Evan started to have some issues with balance and was tripping and falling a lot. He also started having some emotional difficulties such as frequent crying and meltdowns, which was very unusual for him. In the few weeks prior to his diagnosis, he also developed some drooling, slurred speech, lethargy, and headaches. We brought Evan to our local pediatrician and thankfully, he took things very seriously and advised us to go to the emergency room in order to expedite an MRI. That same day, we went to Barbara Bush Children’s hospital in Portland, ME and our nightmare began. Evan did have an MRI at 9pm that night, which they told us would be about 45 minutes. After two hours had passed, we just knew something was really wrong. After the MRI, close to midnight, we were called into a conference room with a pediatric doctor that was there that night. She told us that she had “bad news” for us and that Evan had a brain tumor. She showed us the slides from the MRI and pointed out the tumor, but said since was not a neurologist, she couldn’t really provide us with any further information, and we would have to wait until the morning to meet with a specialist.

What did receiving the devastating news of your child’s serious illness feel like for your family?
After finding out that Evan had a brain tumor, we were in complete shock. We obviously knew that something was going on with him, but honestly never considered this. The following morning, we were again pulled into a conference room with an oncologist, palliative care doctor, and a social worker. It was then that we found out that not only did Evan have a cancerous brain tumor, due to its location in the brain stem, it was considered inoperable, that chemotherapy was not an option, and that palliative care (radiation) was the only option. We were told he had approximately 9 months to live. I think this was the worst day of our lives; learning that our son had cancer and that there was nothing we could do to save him was just absolutely devastating. It’s something no parent should ever have to live through. Two days later, Evan had a brain biopsy surgery and spent the rest of the week in the hospital.

How did your child’s treatment progress? Describe one or two of the hardest moments. If you can, tell us a bit about their final days and end of life.
In August of 2019, Evan began his first round of radiation, which would be for 30 days. Because he was only five, our team insisted that he needed to be sedated for each treatment, which also meant having a port surgically implanted prior to starting radiation. Each morning we had to be at the hospital, which was an hour away, for 7 am. About two weeks into radiation, Evan’s port became infected and he had to have it removed and was hospitalized for another week and received IV antibiotics, for which he needed a PICC line. Fortunately the infection was able to be treated and he was discharged with home IV antibiotics, which he would need for several weeks. I don’t recall a home health nurse ever coming during this time, other than an initial visit, which meant that Brent and I were responsible for running the pump and flushing out his PICC line daily. Evan did remarkably well with radiation. He started to improve drastically about halfway through and had almost complete symptom resolution. Evan was able to begin kindergarten at the end of September 2019, something that we never thought he would do. Evan also started a targeted oral chemotherapy medication at that time.

Over the next three years, we really tried to live every day to the fullest, which was difficult because we were experiencing anticipatory grief, along with considerable anxiety around when Evan’s symptoms would begin to come back. Despite the pandemic, we traveled all over the country as a family and went on as many adventures as we could. When Evan was first diagnosed, I stopped working and Brent began working from home full-time, this meant that we got to spend a lot of time together as a family, which we really enjoyed and cherished.

After about a year, Evan began having some symptoms again. After much debate, we opted for a second round of radiation, which was 20 courses. Our medical team was hopeful that Evan would respond well, since he had the first time, but it was not without considerable risk. Evan completed a second course of radiation right after Christmas of 2020. This time, we advocated for Evan to be awake during radiation as we did not want to take the chance on another port or PICC line. Evan was the first child to have radiation awake at Maine Medical Center, and he did so well! He was so brave, it was really amazing, but I guess not really surprising given the special kid that he was. He again responded very well and was able to return to school and even got to play on the town baseball team that summer. Shortly after completing radiation, Evan was started on a new trial medication for which we had to travel to Rochester, NY every other month to obtain.

In December of 2021, Evan started to decline quickly. We had just started him on a new oral chemo combination a few months before, but it was not helping. In just a few weeks, he went from going to school, playing and eating, to becoming so unstable that he was unable to walk without assistance, could no longer eat solid foods and was having difficulty speaking. This was a very scary time as we knew that we were likely out of options at this point. We ended up starting Evan on steroids again, which we always said we would never do because of the horrendous side effects, but they did help his neurological symptoms for a short time. Evan also underwent a third, short course of radiation as an attempt to stabilize the tumor. He also started Avastin, which is an IV chemotherapy type drug that can help reduce swelling in the brain. We continued this for a few months, until it became too difficult for Evan to travel to Portland. Over the next few months, Evan lost his ability to eat, speak, walk, use his left arm, and no long had fine motor skills. He also gained about 20 pounds in just a few short months because of the steroids, which caused him to have really bad stretch marks on his stomach, that eventually split open. These were very painful and required wound care and daily dressing changes.

Because of all the side effects, in April of 2021 we decided to discontinue steroids. This was a very difficult decision as we knew that he would likely decline from a neurological standpoint quickly. Instead, for a short time, the opposite happened. Evan’s mood improved dramatically and he began laughing and trying to smile again, and his speech also noticeably improved. We really maximized this time that he was feeling better and went on a few long weekends, saw friends, took him to our daughter’s sporting events, and even took a trip to Florida! I remember we went to Vermont to be with Brent’s family for Memorial Day Weekend and he was still in good spirits, but the following week started to decline quickly. Evan could no longer swallow or take in anything by mouth, so we opted for a feeding tube procedure. Shortly after that, his heart rate began to sky rocket and then his oxygen levels began to drop and he needed to be on continuous oxygen. The night of June 8th, Evan had gone to bed and woke up shortly after complaining of extreme thirst, but since he was unable to swallow without choking, this was very difficult to manage. All night we were giving him drops of gatorade with a syringe, but he would eventually start choking, so we would have to use the suction machine and then also use a nebulizer to clear out his lungs. At this point Evan was regularly using morphine, so the next morning our hospice nurse suggested to give him another dose of morphine and some Ativan to calm him down. He fell asleep on the couch in the living room and would never wake up again.

We spent the day snuggling with him on the couch and friends and family stopped by to see him and say goodbye. That night, my husband had the foresight that Evan would likely pass away, so we all decided to camp out in the living room with him. Evan’s heart rate continued to sky rocket and around 1am his breathing pattern changed and he took his last breaths. The three of us were holding him and it was an extremely peaceful transition. As strange as this sounds, it was how we hoped it would be for him. In some ways I felt very similar emotions as I did when he was born, which was just essentially an immense amount of love, only paired with sorrow instead of joy. We changed him into his favorite Super Evan shirt and wrapped him up in a special blanket given to him by friends. The next morning, family returned to be with him and we were able to keep him home with us until the funeral home came around 9 am.

What made your child unique? What were some of your child’s favorite things to do during treatment? Did they have heroes, sources of comfort & joy?
Evan really defied all of the odds from the beginning. When Evan was first diagnosed, we were told he would only live for about 9 months, but he not only lived, but really thrived for almost three years. I think this may partly be due to all of the alternative therapies that we tried, including a strict Keto diet, high dose cannabis, hyperbaric oxygen therapy and multiple supplements. I think the other part was Evan’s spirit. He was such a happy kid all the time. He knew that he had cancer, but he had no idea that he was going to die. One thing that brought Evan a lot of comfort the last few months was seeing his friends. We had people sign up to come over and read to him and we had LOTS of visitors, it was really wonderful. The other main source of comfort was always doing Lego sets. We spent so much time putting Lego sets together, and when he was no longer able to help, he would sit and watch us put them together. Evan was filled with so much joy and he LOVED life, his friends, and his family so much.

How are you dealing with your grief? How are your surviving children or partner managing now? What are some of the things that help your family keep going?
After Evan passed, I think we all felt a small sense of relief that he wasn’t suffering anymore and were somewhat in shock/numb. Now that some time has passed, it just seems like it’s getting harder. The realization that we are never going to see him again has really set in. We just miss him so much and think about him nearly every second of every day. We keep going because there really is no other option. It certainly isn’t easy, but we know that our daughter needs us and we want her to have the life she deserves. We also want to live a life that would make Evan proud.

Do you have any advice for a family facing the end-of-life of their child? What helped you most? Are there any organizations that we can share as resources to other families?
I think the biggest thing for us was focusing on quality of life at all times. We always did what we thought was best for Evan and tried not to let our own emotions get in the way of this. I also think it’s really important that you can hold on to hope and still accept that your child is going to die, and accepting this does not mean you are “giving up.” We also knew that we were living on borrowed time, and that was how we lived.

One of our favorite organizations (aside from Rett’s Roost) is The MaxLove Project. Their mission is helping kids and families thrive, while going through treatment or facing a terminal illness. Without their support and resources, I honestly don’t know if Evan would have done as well as he did for such a long period of time. I am also currently participating in a grief support group through MaxLove.

How has finding Rett’s Roost been helpful to you?
We were connected with Rett’s Roost very shortly after Evan was diagnosed. Deana has personally been a great support to us. During the pandemic, we were also given a family grant which helped us take an RV trip of a lifetime out west. I have participated in several mom’s outings and in July 2022 we attended a bereavement retreat. Connecting with other families has been so incredibly powerful. Rett’s Roost provides a space for bereaved families to authentically connect with each other and openly grieve.

The Fromwiller Family

UPDATE: Sadly, Chace passed away on September 11, 2023 at home. We will update the Fromwiller’s story soon. Please keep their family in your thoughts.

Chace is a fun loving 12 year old boy. He loves football, marvel comics, star wars, legos, video games, and hanging out with his three older siblings. Chace was just a “regular” kid, and prior to diagnosis was very happy and healthy. 

But in the fall of 2021, Chace began experiencing headaches. After about a month, he had a CT scan, which appeared normal. He then experienced eye crossing and was seen by an ophthalmologist, who ordered an MRI. 

On January 14, 2022, the Fromwiller family was given the worst possible news; Chace had an inoperable brain tumor (DIPG), for which has no cure and palliative care was the only treatment option. His family was given a 9 month prognosis for survival.  

Chace underwent 82 rounds of radiation, on both his brain and spine. He has also received multiple types of chemotherapy and was selected to participate in the groundbreaking Car-T trial at Seattle Children’s Hospital, where Chace spent two months this summer. Unfortunately, due to progression of the tumor to Chace’s spine, he had to go off the trial and come back home to undergo additional round of radiation on his spine. Chace has been having difficulty eating and also keeping his platelet counts up and will be undergoing surgery for a new port and a G-tube in the very near future. Chace primarily treats at the Maine Children’s Cancer Program in Scarborough, ME. 

Chace’s mom, Bethany, told us that the news of the DIPG diagnosis completely rocked their world; it felt like their life completely stopped when everyone else’s kept going. They have experienced anger, sadness, and numbness at times. 

This past year Chace has faced this battle with courage and grace. He is a very happy kid and hardly ever complains, despite not feeling well. The Fromwiller’s are currently focusing on Chace’s quality of life by spending as much time together as possible and making memories. They are planning trips to Florida and to Hawaii very soon! 

Last summer, the Fromwiller family was able to have a private retreat with Rett’s Roost. It was a very relaxing getaway and they were able to enjoy time together without the constant thought of fighting cancer. They enjoyed spending time exploring Ogunquit, ME and just being together. Rett’s Roost has continued to be a great support for the Fromwiller family and has also helped connect them with other local cancer and DIPG families. 

The Dougherty Family

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

Odin was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) on October 3, 2013 when he was two and a half years old. We noticed he was stumbling a bit, his right eye was crossing a little inward, and he was having a few more emotional outbursts than normal. However, his little sister had just been born not even six weeks prior, and we thought he was reacting to new changes. We went to the doctor, who sent us for an MRI the next day. It was then they told us there was nothing we could do, except maybe look for a clinical trial that would give us time to “come to terms” with his inevitable death.

How did their treatment progress? If you can, tell us a bit about their final days and end of life. 

We were accepted into a clinical trial through Duke Children’s Hospital and Odin started a typical round of radiation on Halloween. He finished with radiation and an experimental drug shortly before Christmas, and went on his Make A Wish trip to magical Disney. We went on a giant character hunt and let Odin be a little boy for awhile. After the holidays, he was on a few rounds of chemotherapy, but when his symptoms shifted in March, we discontinued the trial, as the chemo seemed to be doing more harm than good. We were told it could possibly be progression, and would know it when we saw it. Odin had weakness on the right side of his body and sixth-nerve palsy of his right eye. Other than anti-anxiety medication and some natural supplements, he was able to come off of other medicines, and was signed up for in-home hospice services. We spent the summer visiting family and taking Odin on adventures to the beach and the mountains. When fall came he was still stable, so Mom returned to work and we tried to settle into a routine. For the most part, Odin was Odin after diagnosis. Still very loving. However, while he was on steroids, he got so extremely angry. Even without steroids, there was a period of time after treatment where he got extremely anxious. He’d throw these huge tantrums where we’d have to hold him down so he didn’t hurt himself. Anti-anxiety meds helped a huge deal after that. He developed a fear of fire, even becoming concerned when cartoon characters faced it. We imagine it was either something he saw in his brain or experienced through radiation, but we’ll never know.

In March of 2015, we started seeing some small changes in mobility but we didn’t have any other viable treatment options for him. It wasn’t until April 11th that we saw definite signs of progression, and over the course of the weekend he lost the ability to walk. He passed away on April 29th, a month before his 4th birthday, and 18 months post-diagnosis. We were told for DIPG this was a significant amount of time. 

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

Having a child is carrying a piece of your heart outside of your body. Losing a child is having to carry that empty space with you for always. It is a wound that never heals. Early grief was numbing and raw at the same time. We really struggled, especially for the first two years. The first year was a lot of shock, second year a lot of coping and searching. We tried counseling, retreats, medication. It’s also very lonely because even those with the best of intentions start to peel away outside of crisis mode. 

What helps you in your grief now? 

Bereavement retreats on a yearly basis have been essential. It’s one time when it’s absolutely OK to talk about our son where no one judges us or acts like  we should have “moved on” already. We’ve tried some self-wellness. Dad meditates, Mom does reiki. Mom tries to do some DIPG research fundraising. We both try to have meaningful activities and spend time with our other children. Priorities have really shifted. Family is more important. A lot of other things seem pretty trivial. We still struggle, but we’re now 5 years out and things seem a little less acute, though there isn’t a day that goes by that we do not think of him.

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

Scotland was only about two and a half when Odin died, so she was a baby through most of it. The worst thing for her has probably been dealing with our anger and sadness. We’ve probably been a little too hard on her, and her sister. We have three girls, two born after Odin’s death. We talk openly about Odin and he is included as part of the family. When Scotland first started preschool, she would talk about him, and you’d never know when she’d mention she had a brother who died. They do fine, though sometimes it’s hard to figure out how they are processing the idea of “death.” Larkin, who is 4, is at the stage where she sometimes talks about him as if he’s living someplace else and can’t visit.  But, Odin’s a part of their story. They often say they miss them; Scotland is now at a point where she doesn’t have real memories of him.

What made your child with cancer unique? 

People always said he was an “old soul.” He had these great big brown eyes and a way of calm contemplation and taking in the world that was surprising for how small he was. He also had a great sense of humor though and could be extremely silly. And so very loving.

What were some of your child’s favorite things to do? Did they have heroes, sources of comfort & joy? Odin Baer loved cuddles, Curious George, music and dancing, all things Muppets, and playing outside with his sister Scotland and his friends.  His favorite movies were the Toy Story movies (he called them The Dinosaur Movies, because of the character Rex). He was often quiet and observant and his humor would sneak up on you. He called Batman “Fatman,” even after we corrected him, and even though his tent was the “Batcave.” He woke up each morning with a smile. When he couldn’t really walk anymore, he’d still call down the hall for Mom to come get him. One of the big things we remember is that he always would ROAR like a bear. He even taught his little sister, who was under two.  He gave kisses and hugs amply, had big brown eyes and a curiosity for the world. He loved everybody.

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

It can happen to any child. We had never heard of DIPG until our child was diagnosed. And it wasn’t anything we did or didn’t do. It just was. The worst straw drawn, ever. 

But, we had hope the whole time. We had to, to keep going. As my husband said at the time, “We have the rest of our lives to grieve.” So we tried to make every day count for Odin. 

How did you find out about Rett’s Roost?

I searched for bereavement retreats, and maybe saw something in an online group. I reached out, even though we live out of region, because we needed something as a family. 

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

Friends, connections, and knowing we’re not alone. I also discovered some therapies and techniques that can help me process when I’m alone.