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The Iselin Family

A diagnosis of Acute Lymphoblastic Leukemia (ALL) isn’t typically a life sentence for a child. In fact, the 5-year survival rate for U.S. ALL patients younger than age 15 increased from 80.2% to 87.5% between 1990 and 2000. It’s referred to as “the good cancer” in children. And while that does offer some relief to parents receiving the terrifying news, the treatment is long, grueling, and incredibly difficult. And that incurable 12.5% looms large.

This is Henry’s story. He should have been in that 87.5%. He successfully made it through the 3.5 years of treatment. And his family celebrated–albeit cautiously. Because as Henry’s mom so rightly reminds us, “It was always in the back of our minds that this was cancer. That horrible things happen to people with cancer. That this is not an easy journey, and it doesn’t always have a happy ending–even if we were told there was no reason Henry would not be a survivor.”

It was April of 2017 when Henry’s symptoms came on very quickly—of utmost concern was his sudden distended belly. He was looking pale and threw up once or twice. His parents, Toby and Brenna, brought him into the local pediatrician on a Saturday morning. Her exam revealed a swollen spleen, which warranted an ultrasound and bloodwork. The labs didn’t look good, and the ultrasound revealed an enlarged liver and spleen. The doctor sent them to the nearest specialty hospital—Dartmouth Health. There they did more tests and imaging and gave Henry an IV. At 10pm that night, while Henry was asleep in his hospital crib, the team of doctors came in and told them that Henry most likely had leukemia. They would need to wait two more days to have the official diagnosis through the bone marrow biopsy, but the medical team was fairly certain he had cancer.

 “To say we were in shock, devastated, and in denial is a complete understatement. I remember sobbing in a fetal position on the hospital room floor. We talked to each other, promising that we were going to tackle this like anything else. We promised to stay strong for Henry, our other kids Elodie and George, and each other.”

-Brenna, Henry’s mom

All things considered, Henry’s cancer journey was pretty “normal.” It was 3.5 years long, beginning with 10 months of intense treatment. While in the hospital, they ordered hand sanitizer dispensers, Clorox wipes, and had their house professionally cleaned for when Henry returned with a compromised immune system. Henry lost his hair twice during those first 10 months. He wasn’t allowed to go to school with his twin sister, or visit his grandparents’ farm where he had gone once a week since birth until he was diagnosed. They had to keep him free from as many outside germs as possible. They couldn’t wait until the “maintenance” phase of treatment, where they were told his immune system would strengthen and things could get back to “normal.”

Unfortunately, Henry’s transition into maintenance treatment was not easy. He contracted a rare virus called Coronavirus (this was back in 2018), which caused pneumonia. He was in the hospital off and on for 3 weeks while they figured out what was going on. He needed to have a bronchoscopy, which was the first time he was put on a ventilator. He ended up needing oxygen while he slept at home for over a month. That helped rest his lungs enough to strengthen him. As he recovered from the virus, he got stronger, he didn’t need oxygen anymore, and he was able to eventually join his siblings at school.

Once Henry was safely transitioned into the maintenance phase of treatment, things went really well. The Iselins created many favorite memories of life with Henry during this time. He was on maintenance for about 2.5 years, going for monthly chemo appointments, taking chemo nightly at home, and having “doctor naps” (ie., spinal taps) once every 3 months. Looking at him, no one could tell he was sick. He developed right alongside his twin sister and other peers. He was vibrant and happy, and took his pills every night like a champ. Everything was going amazingly, and the end of treatment was getting close.

Henry’s last official chemo pill day was August 24, 2020. The family was excited (yet nervous) to finally reach the end of treatment! As they got closer to the date, however, Henry came down with chicken pox. He was vaccinated with the first dose at 12 months old, but after he was diagnosed with leukemia, he wasn’t able to get the second vaccine. They didn’t know it was chicken pox at the time– it presented more like hand-foot-and-mouth disease. He visited his pediatrician a few times, but once he wasn’t able to eat or drink due to the discomfort in his mouth, he was sent up to Dartmouth.

Henry was admitted back to the hospital the day after he finished his 3.5 year cancer treatment. Once there, he was quickly diagnosed with chicken pox and put on an anti-viral medication. He didn’t get it in time, though, because soon the chicken pox spread to his lungs. He was intubated and even with the ventilator on its highest setting, it wasn’t enough to support his lungs. Henry was flown to Boston Children’s Hospital and quickly put on ECMO. The ECMO machine did what it needed to do. It gave Henry’s lungs a chance to stop working for several days and just rest and heal. While on ECMO, however, the doctors discovered Henry had contracted a fungal infection. They immediately became very concerned about having foreign objects in his body (his port, the tubes for ECMO), and so they unceremoniously removed his port. Once off ECMO with healing lungs and back on the ventilator, they took Henry for an MRI. They were concerned about the fungus, and rightly so–the MRI revealed that Henry had fungus in his brain, deep in his hypothalamus.

From this point on, it was one step forward, two steps back. Henry fought so hard. He was faced with multiple life-threatening issues, and he kept on going. This included fungus in his eye, three aneurysms, a never before done brain surgery, SVT, a tracheostomy, fear of relapse, and much more. Eventually brain damage caused by the fungal infection caused his heart stopped for six full minutes. They were able to revive Henry, but that incident completely changed the course of action–they were told his brain would never recover. Henry died three days later in the comfort of his mom and dad’s arms listening to peaceful music and still cancer free.

***

Toby and Brenna knew how hard this loss was going to be for them as a couple, and for Elodie and George, Henry’s siblings. After they knew that Henry was going to die, they made legacy casts of his handprints and footprints. They were later able to use those to create many special pieces in a shrine to Henry and throughout their home. As a couple, they promised to communicate and be there for one another’s grief, and to be open with their children by continuing to talk about Henry, and how much he’s missed, every day. Of course it’s been incredibly hard, and of course they’ve had difficult times personally and in their relationship, but they continue to recommit to communicating openly with each other every step of the way. And that has helped their family grow into their grief together.

“Communication with your partner and children is so important. This is a life changing event. Everything needs to be honest and out there. This is not a road to be traveled alone.”

Brenna & Toby gave this advice to newly bereaved families

In an effort to really get it all “out there”, the Islelins are members of several grief groups. Rett’s Roost’s monthly bereaved parent meetings have helped them connect with other families, hear how they are coping, and share about their own tumultuous feelings. They also belong to The Children’s Room based out of Arlington, MA, which they highly recommend for their bereaved sibling groups. Toby hikes their local mountain, Mt. Monadnock, weekly for his own therapy and participates in their local Compassionate Friends group. Brenna has been in individual therapy to help understand and deal with her own feelings. George and Elodie participate in the bereaved siblings groups through Boston Children’s Hospital and The Children’s Room.

Toby dove into the world of grief books for himself and copes with “bibliotherapy.” There is a large range of books that he listens to including books about grief and the grieving process as well as books about signs from the other side and life after death. They bought just about every single grief book that exists for children as well, to help answer some of the questions that would come up for Elodie and George about where their brother is now.

On a regular basis, they honor Henry and his short, beautiful life. They attend ceremonies and services at Dartmouth Health and Boston Children’s Hospital where Henry, along with other children, is remembered. They do an annual ‘Hike for Henry’ where the main purpose is to invite other people to take time outside together as a family and enjoy nature, just like Henry did. They started a foundation in Henry’s name so they can give back to organizations that were special to him. They also do fundraisers for Alex’s Lemonade Stand Foundation throughout the year in Henry’s name.

The main thing that keeps them going, however, is that they created a memorial to Henry on the farm he loved to visit. Toby’s parents then gifted them that land, and they built a house right there. Henry’s Spot is now right outside for whenever they want to sit and remember him. They have pictures of Henry and the kids throughout their house, as well as his artwork, toys, and treasures. They talk about him as a family, remember him, and celebrate him constantly.

Henry was an incredible child! For most of his life, when people met him, they weren’t able to tell that he was battling cancer. He was full of life! He was happy and loving. He was so silly. He had just the appropriate amount of potty humor to drive his older brother crazy. Henry loved being outside and spending time at “The Farm,” which is the farm where his dad grew up – with his Mimi and Paipa. He also loved being with his other grandparents, Yaya and Papa. Henry went to the Montessori Schoolhouse of Cheshire County in Keene, NH for the toddler program and preschool. He loved learning and trying new things. He was cautious yet brave. He appreciated the small, gentle things in life – pretty stones/rocks, wildflowers, slow walks holding hands, little bugs, and more. He absolutely LOVED donuts and mac and cheese, tractors, and gators (the driving kind). During Henry’s “Doctor Days” he loved driving around in the Little Tykes car with his keys in the ignition – whether those were toy keys, real car keys, or a straw acting as a key, he always had a key for his car! While at the doctor he also loved his mac and cheese (every time), favorite nurses, iPad time (a special treat!), and playing doctor on dolls with all the appropriate medical tools – IV’s, port, syringes, and more!

***

We first met the Iselins during the pandemic when we were holding online grief retreats for parents. We asked Brenna how Rett’s Roost has helped them cope over the last few years without Henry, and she shared the following…

“We appreciate the monthly peer support meetings that are held. It’s really nice to connect with other bereaved families and hear how they are continuing to cope and survive. The last two years we participated in the annual Behold the Cold Polar Plunge, helping fundraise for Rett’s Roost in Henry’s honor. It is so therapeutic to run into a freezing cold ocean together as a family in memory of Henry. That got me more interested in cold water therapy in general, and now I love taking cold showers – something I thought I would never do. Rett’s Roost also sends special things throughout the year – maybe something for our surviving children’s birthdays, or the anniversary of Henry’s death. It makes us feel as though someone is continuing to watch out for us and that Henry is remembered. And although we have not been able to attend one of the family retreats yet, it is certainly something we hope to do.”

Brenna on how Rett’s Roost has been a part of their life since Henry’s death

Hope’s Story

Back in November of 2023, our friend Libby at Make a Wish NH contacted us about a little girl named Hope living in Rochester. Hope had a very rare brain cancer that I hadn’t heard of before, called Astroblastoma, MN1 altering Bendz 2. And because it’s such a rare type, even doctors weren’t too sure how to treat it. Unfortunately, no matter what they threw at her cancer, it kept coming back. And now it was back with a vengeance.

I reached out to Hope’s mom Tabitha to see if she wanted to connect. And so on the week of Thanksgiving, with a meal provided by the wonderful Bill and Wendy Irish from For the Love of Food and Drink in Wells, I went to meet Tabitha, Hope, and her two little parakeets.

Hope was already on hospice by that point, and she would only live another two months. I was struck by their story, because this family had been through a lot more than just cancer…

Hope Elizabeth Marie Levesque, lovingly called Hopey, was born on September 12, 2018. Her mom, Tabitha, and big sister Ashlyn, were overjoyed to have her join their life. She brought them joy during a difficult time, as they were abandoned by her father, who suffers from drug addiction. It would just be the three of them, against the world… nothing could stop this strong-willed trio of females.

For three years, life seemed normal. Tabitha worked to become a journeyman carpenter, proudly supporting her daughters. Soon after Hope turned 3 and a half, in the spring of 2022, Tabitha started to notice something was wrong with her little girl. She started to not be able to keep food down, and was vomiting frequently. She would scream through car rides. Thrashing in pain. The doctors suggested she might have a gastro-intestinal issue, or lactose intolerance. This was just the beginning, however, because soon Hope started to lose her speech, and wasn’t able to lift her left arm.

Sadly, her doctors still were not seeing the signs of a brain tumor. For some reason, it is very common for pediatricians to avoid checking for cancer in children right away–like it is a rare, 1 in a million chance. We hear from so many families that their pediatricians brushed off these most obvious signs and symptoms. The fact is, 1 in 285 children will have cancer before they turn 20. And that ratio indicates that it is actually quite common. Everyone knows that early detection of cancer is so key. But for Hope, the doctors refused to see the severity of her condition.

In May of 2022, they reached a breaking point. Hope was in constant pain, particularly at night. She went from dragging her leg to no longer walking at all. Tabitha decided it was time to take her daughter to a new set of doctors, at Wentworth Douglas Hospital in Dover, NH. At first, they seemed annoyed. Why would she bring her daughter there when she had a doctor in Laconia (where they were living at the time)? But Tabitha persisted–why would no one help her baby? Finally the doctors agreed to do a full work up. Bloodwork came back normal, so they ruled out a seizure or stroke. She insisted they take a CT scan of her brain next… and that’s when they finally noticed the tumor, which was already 3″ in size.

Hope was rushed by ambulance to Mass General Hospital’s ER. The room flooded with doctors to prepare her for an emergency MRI. An oncologist came in to talk to Tabitha to inform her of the urgency. They sat her down and told her that Hope would need to have immediate brain surgery, or else she could die very soon. The surgery took 6-7 hours and the whole time Tabitha wondered if she’d ever see her little girl open her eyes again.

The gross total resection was a success but it left Hope in so much pain. She didn’t understand what was going on, and with the transition from anesthesia to opiates she became uncharacteristically angry and unmanageable. Although she needed to lay down and rest, she wanted to be upright. But in her thrashing, she split her wound open. They put a cap on her head, but she hated it. And wanted to rip out her IV. It was scary for her mother to watch her sweet little girl so furious and confused.

After spending a week in the hospital, she was released to Spaulding rehabilitation center in Boston for another two weeks. On June 30, she received her first proton delivery radiation treatment at MGH. For the next 7 weeks they stayed at RMCH. While there, she contracted RSV and had to pause radiation for a week. Luckily she recovered and would get to go home for 4 weeks, which would include her birthday celebration, before she would start chemotherapy. Her chemo treatment took place over the fall. Her tumor biopsy had come back “unmethylated” which wasn’t good news. That would be mean that she’d have to receive Lomustine (CCNU, CeeNU) instead of the more common Temozolomide (TMZ) treatment protocol. They weren’t sure this would work to keep the cancer from growing back.

On Christmas day of 2022, Hope woke up and opened three of her presents. Suddenly, she went into a seizure. Tabitha called 911 but they sent an ambulance that would transport her to Frisbee Hospital but not Wentworth Douglas. Because of the holiday, Tabitha was having trouble getting in touch with MGH. The EMT checked Hope’s vitals and told her she could drive Hope to her preferred hospital. At WDH, they did a CT scan. The results showed 3 new tumors. Hope was then immediately transferred to MGH by noon on Christmas Day.

MGH did many tests. They decided to discontinue the CCNU chemotherapy and started her on Avastin. Because of the location of the new tumors, she would not be eligible for surgery. They stayed in-patient for one week at which point Tabitha contacted Make-a-Wish to try to rush her trip. Things were not looking good for her sweet little girl.

On 2/24/23, Hope got to take her Animal wish vacation in Florida with her mom, sister, and grandmother, staying at Give Kids the world. Luckily, Hope didn’t have the same symptoms as before… there was no pain, vomiting, or left side weakness with these new tumors. She was in good spirits for her trip and got to enjoy Sea world, Animal Kingdom, Universal Studios, and Discovery Cove.

Hope had another scan on 3/10, and they learned that the Avastin had worked on 2 of 3 spots… she was now eligible for surgery where they removed the last tumor and planted radioactive seeds. The radioactive seeds would be active for 97 days. But after surgery, the left sided weakness started to return. At the end of May, she had a stroke. And another in June. She was hospitalized for a week each time. Her M1S1 and A1 arteries in her brain had thinned out so much that they branched out and she was having a lack of blood flow. They diagnosed her with William Moyamoya disease and prescribed blood thinners. But if she had a temper tantrum or got dehydrated, she could have another stroke, and one more would be devastating to her brain function.

September arrived and Hope’s 5th birthday party was amazing. Because she loved animals so much they rented her a petting zoo, which included pony rides. She also had a bouncy houses with water slides. Tons of her friends and family showed up. She played and got to open lots of presents. Her favorite gift was her beloved parakeets, Oreo and Cookie. Sadly, Oreo passed away a couple days before Hope.

Her next scan was 9/6. The doctors said the scan showed spots that looked like necrosis (dead cancer cells), but Tabitha knew it was the cancer coming back, and didn’t feel the same optimism as the medical team. They encouraged Tabitha to send Hope to school. But she was facing the same deficiencies–pain and nausea at night mostly. On 9/10 Tabitha noticed a bump on Hope’s forehead. It grew as the weeks passed. By her next scan on 11/7, her whole forehead was swollen. This lead to an emergency MRI where they confirmed two new masses. Tabitha’s intuition had been right.

At this point Hope’s doctor, Dr. Ebbs, gave Tabitha the devastating news that nothing more could be done. Throughout Hope’s treatment Tabitha had a good relationship to Dr. Ebbs. He visited every day when they were in the ICU or clinic or in-patient. He’d gave them all the time they needed and answered all of Tabitha’s questions with care and concern. He even gave them his cell phone number in case she needed to call.

Tabitha was told she could stay in the hospital but she decided to take Hopey home, knowing that was where Hope was happiest and that she could come back at any point if she couldn’t handle Hope’s medical needs or pain. Because the previous Christmas had been so traumatic, and since they weren’t sure how much time they had left with Hope, they decided to celebrate Christmas early on 12/2.

Cornerstone hospice started to visit to the house regularly, but it was never enough support. Hope needed a lot of pain mediation (which she adamantly hated taking) and Tabitha was beyond stressed caring for her very sick child. On 1/6, Tabitha made the choice to go back to MGH because Hope started violently throwing up, couldn’t breathe, and was experiencing massive headaches even with frequent doses of morphine and a fentanyl patch. They would be there for the final two weeks of Hope’s life.

The Friday before she passed Hope’s favorite nurse Lindsey came in to visit her. Hope had been sleeping for 3 days, but was able to engage by lifting her leg and gave her signature “no-no finger” to show her love.

Her last 24-hours were extremely traumatic. She was in so much pain despite all the medications, and kept waking up screaming for her mom to call the doctors. Tabitha was worried and called her family friends and Hope’s grandmother to come visit. After they left, Hope’s condition declined even more. At 5pm on Saturday she had a seizure, sitting up and grabbing for something. This was the first of 3 sets of 13 seizures. The doctors could not really help and were just giving her ativan and more pain medication. They would not admit that this was the end for Hope. After the last one, she never moved again.

Tabitha called for her mother to come back at 10pm because the she noticed Hope’s breath becoming crackly and uneven. Dr. Ebb came in at midnight after just returning from a vacation. He sat with them for several hours and admitted that the time was near. Ashlyn and Tabitha’s sister arrived in the middle of the night. After visiting for a while they went to sleep but Tabitha stayed awake by Hope’s side. At 5:50am on January 21st of 2024, Hope’s breathing changed and became softer and more spread out. She took about 5 gentle breaths and then just stopped. It was the end. Tabitha sat with Hope and a few people came in to visit, including Tabitha’s childhood best friend’s mom and neighbor, Sonya, and Angie, the mom of Hope’s best friends.

Hope was a fighter, there is no doubt about that. She was also very generous and loved putting candy in her little backpack so she could hand it out to friends on the playground. She loved her friends and would always try to wake up to play with them when they visited her, even at her sickest. Hope hated the dark, and especially when she had a tumor in her head. She found solace in a little light-up star pillow and her favorite baby blankie (no other blankie she received during treatment ever compared).

Her love for animals was fierce. She got to ride a pony three different times during her life and was deeply comforted by her birds, Oreo and Cookie. During the last weeks of her life she was able to visit Beecher Grogan’s farm, where they received a family portrait session and got to pet all of the farm animals.

Tabitha’s employer at North South Construction services has been extremely supportive though this whole time. They raised money for Hope and offered to pay for her services. They let Tabitha take time off when she needed and then took her back immediately when she wanted to work. And Tabitha also felt greatly supported by the people at Make a Wish NH, Cops for Kids with Cancer, Hope Floats, and the Children’s Brain Tumor Foundation. Although Hope never got to attend one of the Positively Healing Retreats for survivors with Rett’s Roost, we believe our grief services will be a great support to Tabitha and Ashlyn in the coming years.

If you feel inclined to help this single mom and teen daughter get through this most tragic time of their lives, please donate to their gofundme:

Hope’s Gofundme

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.”

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 East Family

Before Owen East was diagnosed with DMG (diffuse midline glioma) on June 18, 2021 at the age of 4, he was a perfectly healthy, happy little boy. His parents, Erica and Brad, brought Owen to the emergency room after he became very lethargic one day. In the few weeks before that, he had also been experiencing intermittent headaches and some vomiting–which are common signs of a brain tumor that most parents might not know. Erica, however, is in the medical field, and knew something was wrong. 

At the time of diagnosis, Owen’s little brother Andrew was just three weeks old, which made everything feel even more difficult and chaotic. Erica says that finding out about the terminal diagnosis was like entering a parallel universe and that it was extremely difficult to care for and bond for a newborn while in the midst of diagnosis and treatment for Owen. 

After completing radiation and starting an oral chemotherapy medication, Owen did remarkably well for 1.5 years post diagnosis with minimal symptoms until he began to have balance issues and new tumor growth after his 6th birthday. His ability to walk slowly declined to needing a walker and then a wheelchair shortly before the end. Erica says It was hard watching him lose the ability to do his favorite things like racing /running and dancing. Owens’ decline at the end was quick and within a 2 week period from his last day of kindergarten, he could no longer stand, hold his head up, swallow and had difficulty talking. He slept more and more and passed peacefully, with his parents, in their bed where he always slept, on June 30, 2023. 

Owen was spunky, mischievous, funny, loving and kind. He loved to play pranks, make fart jokes and songs, and do goofy dances he made up on the fly. He had a wonderful singing voice and could often be found belting out his favorite songs even in public. Before his cancer progressed, he would often run fast like his heroes, Sonic and Buzz Lightyear. He LOVED school and mac and cheese.

When asked how they are doing right now, still so soon after their loss, Erica confided in us,

“We are only 2.5 months out and our grief changes from day to day. Sometimes a small trigger can spiral into a very sad day. Other times I watch videos and am able to smile and laugh as I’m brought back to that moment. Andrew is now 2 years old and we try to keep Owen’s memory alive by showing him videos and saying his name often.”

Erica’s advice to other parents facing a terminal diagnosis is to “treasure every moment and let your child have what they want to keep them happy and comfortable.” She also told us she is thankful that Rett’s Roost has helped them find a community of parents and families who have a shared experience, which makes them feel like they aren’t alone. The East family will be attending a bereavement retreat this coming November. 

Zachary & Peggy

Before cancer, Zachary Gagnon was a healthy, vibrant, precocious little boy. In the spring of 2013, he began experiencing recurring stomach pain while at school. He was in the 3rd grade and was struggling to fit in and find a sense of belonging. So his stomach issues were assumed to be a result of stress and anxiety and his pediatrician prescribed him Miralax. But by August, Zachary began noticing a persistent tingling in his right arm.

At a local urgent care, an x-ray showed an unusual space in his upper arm, which was dismissed as a likely “growth spurt.” Fortunately his mother, Peggy, persisted after finding a large lump under his armpit two weeks later, and Zachary was eventually referred to Mass General for additional testing. Peggy recalls the doctor in Boston making a comment, “It is a good thing that you were very astute.”

Mom and son spent a grueling, anxiety-filled week in Boston undergoing testing, and on August 15, 2013, Zachary was diagnosed with Ewing’s Sarcoma at the age of 10. Peggy remembers sitting in the examination room feeling like they were in the twilight zone and a tremendous heaviness, as if the world was coming down on them. Peggy says that Zachary asked the doctors, “am I going to die?” It was incredibly disorienting and devastating.

Zachary underwent 11 months of a strenuous treatment protocol for Ewing’s sarcoma which consisted of chemotherapy, biopsies, 6 weeks of proton radiation in Boston, and surgery of his right scapula to remove what the doctors felt was left of the tumor. Peggy felt helpless as Zachary became extremely frail and sick during chemotherapy to the point where he could hardly walk. He vomited violently and it was grueling to watch.

Following treatment, Zachary was in remission for about 11 months, then a growth on his lung was determined to be a recurrence of Ewing’s Sarcoma. Zachary underwent multiple clinical trials for another year, however none of them were beneficial. Peggy was given the heartbreaking news that nothing more could be done for him. Because of the location of the recurrence, Zachary had a very hard time breathing and was on 24-hour oxygen. The tumor quickly spread to his esophagus and heart. Despite being on oxygen and a morphine drip, Zachary never lost his will to live and told his mom, “I don’t want to die. I am gonna live, do you hear me? I am gonna live!” He said this with such conviction and certainty, Peggy believed him. He also said to her in his final days, “you were a good mom, I love you with all my heart.” A little over three years since his diagnosis, Zachary passed away in the comfort of his home, with his mom by his side, on October 22, 2016 at the age of 13 years and 11 months.

Peggy tells us, “Zachary is an old soul.” He was always mature beyond his years and would often question why his peers were so mean and immature. He loved people, was empathetic to others, and was interested in educating himself about the world. Interestingly, prior to ever being diagnosed with Ewing’s sarcoma, Zachary would cry when he would see commercials on television of St Judes children with cancer. During his treatments, he loved making paracord bracelets and this helped him remain focused and productive. He loved listening to inspirational Christian music on his iPad when he was going through treatments. While in the hospital, he would sing out loud when listening to a Christian song and he would cause the nursing staff to cry as they could not believe how resilient and open-hearted Zachary was. He developed a love for watching social experiment videos on youtube of displaced veterans. During our travels, we encountered people experiencing homelessness which inspired Zachary to want to help. He would often say to me, “what can we do to help them mom?” He also would video tape himself giving inspirational speeches about life, homelessness, and people who are struggling in the world.

Peggy has had a very difficult time the last six years since Zachary died, especially this past Christmas. She lives alone in a remote area and does not have any other children. She still has Zachary’s dog, Ginger, a golden doodle, who keeps her company. Peggy reports that a lot of people in her life have disappeared since Zachary’s passing, which adds to her loneliness. She is currently becoming involved with the Make a Wish foundation to become involved in a positive organization and create meaning of her grief by giving back to others. Peggy previously attended an online grief support group through Rett’s Roost, and felt it was very helpful and beneficial to talk with parents who have undergone the same journey.

The Thompson Family

Sweet, bubbly, one-of-a-kind Cori Kennedy Thompson was born on December 19th, 2018. Her mama, Brittani, and big brothers, Caleb and Caden, were in love. She brought a light to their lives with her infectious smile and sparkling eyes. In early 2020, however, her light seemed dimmer than usual–she was having consistent fevers and unexplained bruises. “She’s probably just teething, not to worry,” her pediatrician told Brittani. But on July 27th, after noticing how fatigued and pale her little girl was becoming over the passing months, she brought Cori to the local ER. Here they ran a blood test that indicated that Cori had cancer.

After being admitted to the Children’s National Hospital in Washington DC, further tests proved that she indeed had leukemia. The type of leukemia was harder to identify, and her records had to be sent to experts at St. Jude, the NIH, and specialists in Mexico. Finally, two weeks later, they gave her the diagnosis of AML with an Erythroid predominance. This diagnosis was devastating because of how rare and aggressive it is in children.

As a single mom of three, Brittani was overwhelmed and pulled in many directions, all which felt helpless and unsupported. She was asked to make extremely difficult decisions about Cori’s complex treatment without enough time or guidance. This is very common for parents of children with cancer. Because of medical liabilities, unfortunately, much of the decision-making is left to the parents who have no background in medicine. Not only was she trying to save her baby girl, but her teen sons needed their mom too. The boys, who we met at our retreat this summer, love their mom and their sister to the ends of the earth, but the entire situation was disorienting and scary to them.

After three aggressive rounds of high dose chemotherapy, Cori still had not achieved remission (which is what should happen with leukemia patients at the start of chemotherapy). The doctors were not giving up though and continued to try different types of treatments over the next 11 months. But it was futile. On June 2nd, 2021, Cori was taken home on hospice, with no options left. And on July 17th, just under one year since she was diagnosed, Cori transitioned at home in her mother’s arms.

The grief has been tremendous for Brittani, and she has struggled to find the support she needs from her family. It’s been an extremely hard time for them over the past year and a half, and as Cori’s 4th birthday approached Brittani told us, “I am broken as a mother, defeated. I often feel as if I failed my child, even though deep in my heart I know I did everything I could to try and save her, but everything was not enough. The cancer was too aggressive.”

Cori was a blessing to all that knew her. She had big beautiful curly hair, which she loved to adorn with huge bows. She was well mature for her age and knew just how to make her big brothers smile. As the family struggles to find footing in a life that is split between heaven and earth, they hold on to each other. The boys are doing the best they can, and Brittani too is taking one day at a time navigating the excrutiating process of losing a child.

Rett’s Roost provided the family with a financial grant when Cori was sick during the pandemic, and after she transitioned Brittani attended our online Grief is Love retreat for parents. This summer, we got to meet them all at our Open to Healing Retreat in Maine. We’re so grateful they would trust their complicated grief and shattered hearts with us. Brittani expressed in appreciation, “You all welcomed Cori, my boys, and myself with open arms. You have always been genuine and shown so much compassion, love, and understanding. It’s difficult for me to talk about Cori and what she went through but without me saying much of anything you know my heart, you know my children, and you will always hold a little piece of Cori.”

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 Schultz 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 Annalise celebrated her 9th birthday. She had just finished a great year with school, basketball, softball and girl scouts. She completed 3rd grade and was moving up to a bigger school in the fall. As a family we were planning on moving into a bigger home for our bigger kids and getting our house ready to sell. Then, just a few weeks after completing third grade during our vacation at the Jersey Shore, Annalise vomited one night after dinner. It was June 27, 2019 and we figured that a stomach bug or perhaps heat stroke was to blame since she had exhibited some confusion as well. She vomited again the next day, so we took her to an Urgent Care and the doctor figured a virus was to blame, and we didn’t think much further. She felt a little better the next day and then started summer camp the next week. A week later she vomited again and had headaches. We went to the pediatrician, who thought it was constipation. Days later the ER told us it was back to back stomach viruses. By the end of July, the pediatrician told us blood work pointed to celiac disease and we were so happy to have a reason for the weekly vomiting. Over a matter of days Annalise began showing some new and alarming symptoms – double vision, a crooked smile, and then off balance walking with weakness on her left side. Aug 7, we called the GI doctor to ask if celiac could be the cause. The GI doctor told us to go directly to the ER, and several hours later, an MRI revealed the actual reason for her terrible summer–a brain tumor. My 9 yr old daughter had emergency brain surgery the next day to relieve the pressure in her head along with a biopsy of the tumor. About 5 days later, we sat in a conference room with our “team” who told us the devastating news: Annalise had a diffuse midline glioma tumor, positive for the highly aggressive H3K27 mutation and that our smart, funny, beautiful and sweet Annalise would only live 1-2 more years with treatment.

What did receiving the devastating news of your child’s serious illness feel like for your family?

I recall feeling like I was dying. Like my heart was breaking, but it was physical. I couldn’t stop crying, but I’d always hide that in front of Annalise. For our family it was like a bomb went off. Our amazing life was blown apart. We were shellshocked and everyone was completely devastated while also desperate to believe that we could find some experimental treatment that would save her or give her more time.

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.

My daughter fought so hard. She spent 1 month in rehab to recover from her initial brain surgery and re-learned to walk, use her left hand and speak with emotion.

She completed 33 days of radiation therapy while also starting 4th grade at her new school. She gained 20lbs from the steroids, so some of her friends she knew for 4 years didn’t even recognize her in the school hallways. She still smiled and persevered. We never told her how deadly this tumor was.

Annalise started feeling a bit better by Oct 2019, making jokes, swinging a whiffle ball bat, jumping rope, and trick-or-treating with friends, despite still having to use a wheel chair for much of the night.

Her post-radiation MRI on Nov 11 revealed some shrinkage in the initial tumor, but a secondary tumor was beginning to grow. We were on the train on our way to NYU to meet about the ONC201 phase 1 trial, when our oncologist called and said this was progression and likely Annalise would not qualify for the trial. We were devastated, again. Annalise was feeling better, we had a Disney World trip planned, and we just couldn’t believe that we didn’t get any good news from the radiation treatment other than slight improvement in her symptoms. Annalise vomited again on Thanksgiving Day, and all the symptoms of progression presented themselves. She received ONC201 through expanded access and took her first dose on November 29, 2019.

Luckily, the vomiting subsided briefly so we had a nice Christmas and gave Annalise some smiles. On Dec 27, double vision started, followed by more vomiting, off-balance walking and headaches. Another MRI on Jan 2 revealed the secondary tumor progressed significantly. We were not ready to give up hope for ONC201, and proceeded with shunt surgery on January 10 followed by 10 days of radiation on the new tumor.

Meanwhile, Annalise’s health steadily declined in January and February. She wore an eye patch to help with double vision. She could not walk without help. Her short term memory was declining. Her voice slurred. She lost some executive functions so she did not laugh and hold conversations the way she used to. She became incontinent. She gained more weight from steroids and only wanted to eat. I searched her ever changing face for signs of my daughter.

On Feb 18, Annalise woke with a massive headache. I laid in bed with her, waiting for the Tylenol to help. We thought it was the typical morning headache, however it wasn’t. Later that morning, we took her to the ER. In the car, she kept saying “my head hurts bad” and started having involuntary movements. The next horrible 7 hours in the ER, we watched her endure so much pain and confusion. That day will haunt us forever. The CT scan revealed a brain bleed. Annalise finally fell asleep around 7 pm and didn’t wake up for 48 hours. She could no longer move, open her eyes or eat. She could barely speak if at all. She laid in a hospital bed for 8 days until she left her body on Feb 26, 2020, almost exactly 8 months from her first symptoms. On that day, without hesitation, we decided to donate her precious brain tissue to the Children’s Brain Tumor Network (CBTN) through the GIFT FROM A CHILD program. We have to believe some good can come from this and believe her brain tissue can help researchers find a cure.

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?

Annalise was the sun in our solar system. She was so sweet and kind but also a force of nature when it came to her joyful energy. She loved her family. She was the family party girl who always seemed to bring us all together. Even if that just meant having a dancing party in our kitchen.

Some of Annalise’s favorite things to do during treatment were plush crafts, watch movies, build Lego, play boardgames, card games, and collect Funko Pop figurines of her favorite Star Wars and Harry Potter characters.

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?

Grief has changed everything about us. We are forever changed. Personally, I still feel broken. Heartbroken beyond anything I could have imagined.

Our son has adjusted well and he actively takes part in honoring Annalise. We honor Annalise every day. I say her name every day. I light a candle for her and as a family we hold a moment of daily silence for her. We have created a few memorial projects in her honor as well. We also work to raise funds for childhood cancer research in her name.

How has finding Rett’s Roost been helpful to you?

Rett’s Roost gave us our first chance to attend a grief retreat as a family. Due to covid we hadn’t had any in-person counseling or met other families who had been through this. Our retreat gave us the space to share, listen, remember, mourn, and honor Annalise along side other families. Although it was just a weekend it was a pivotal experience for our family and helped bring us together and I believe it made us stronger.

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