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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.

The Bares Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.

The first year with Laurel was beautiful.

We noticed when she was about 10 months old that she was easily fatigued and very picky when it came to food. Our pediatrician in Plymouth, MA dismissed our concerns. Her weight loss was described instead as her “being svelte and having great genes.” At her one year appointment, her pediatrician massaged her abdomen and Laurel shrieked, to which the doctor replied, “she must know she is about to get her shots.”

A week later, a softball-sized mass was discovered on her left adrenal gland at Children’s Hospital. I had rushed her there as I knew that something was seriously wrong – despite said pediatrician assuring me she was fine. Because Laurel was so sick upon arrival, she was intubated for a week in the ICU and that’s when we began chemotherapy. We stayed in the ICU for 42 days until we were transferred to the Pediatric Oncology floor.

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

We didn’t receive all of the news at once, but over the course of a few days, we learned that the mass was cancer, that it was Neuroblastoma in its most malignant form, and that it had spread to her bones. I had a feeling at that point that she wasn’t going to make it. I stood over her crib in the ICU for 2 weeks without glasses on in the same outfit while she was intubated. I’m not sure if I prayed or bartered with a higher being. I told my husband that if she died, I would die too. A month later, I learned I was pregnant with our son. He saved me from taking my life.

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.

Laurel’s treatment was excruciating to bear witness to. It pains me to even have to pick one or two hardest moments – I can think of two times where I howled crying for my dying child.

The first moment was after 3 months of intense chemotherapy when she was getting scanned so that we could make sure that the bone cancer subsided in order for us to progress with the next stage of treatment – Stem Cell Therapy. The scan was taking a really long time. She was sedated and they had to re-sedate her to keep scanning. Because my husband worked in MRI (at Boston Children’s Hospital at the time- go figure), he knew that something was seriously wrong. Her Neuroblastoma doctor came to the waiting room and told us that her cancer had only spread – that the chemotherapy had done nothing. What we had put our child through – all of the hell and agony of watching your kid throw up, lose hair, become a skeleton – all of this treatment had done nothing. The cancer was too aggressive. This was considered a “relapse” and the doctors gave her a 10% chance of living. I called my mom because she expected us home much earlier from the scan, and I howled and cried that she was dying, that Laurel was dying and we couldn’t save her, My belly was starting to show with her new baby brother and I wept uncontrollably for hours and days. That’s when I knew she wouldn’t make it. She lived another 11 months through integrative therapies (novel immunotherapy treatments and naturopathy).

The second hardest moment was a few short weeks after finding out she relapsed, I left her room to meet a best friend that had dropped off a care package for us. My husband was standing with Laurel – she was hooked up with a chemotherapy IV and she reached for something and fell down on the floor. Although I wasn’t there, it was like any toddler fall. But because her bones were so brittle, she ended up breaking her left femur (thigh bone). The resident doctor on the floor refused to schedule us an X-Ray, despite Laurel crying in pain. She instead ordered Tylenol and got an ice pack. My full mama bear rage came out – I told this resident, “F your ice pack, order her an X-Ray now.” She saw in my eyes that I was not going to back done. The X-Ray revealed a full fracture and Laurel was placed in a full spica cast that immobilized her hips and legs. She could not walk and had to be picked up to be moved for 6 weeks. She wore a diaper that I could not change because the cast was in the way and keeping her clean was very difficult, but I committed myself to making sure she did not get any skin infections or chafing. I was almost 6 months pregnant carrying Laurel around on my hip in August. We could not travel or bring her to the beach. It was so hard to watch Laurel go through this on top of everything else. She finally had the cast cut so that I could remove the top half and it like a Velcro contraption. One day, my mom’s good friend visited me to help with household tasks. She raised 6 children herself and a very seasoned mum. She knew that Laurel had another 2 weeks to go in the cast, per the doctors orders, but said to me softly, “Leah, let’s remove the cast and let her legs rest.” Laurel, as sick as she was, was so excited to take that cast off. First she laid flat, rolled around, and then got up to walk without question. I remember being able to bathe her for the first time without that spica cast and it was one of the happiest moments for us both!

Laurel was doing well with immunotherapy – she had about 12 rounds of it and it helped her Curie score (how prevalent her cancer was in her bones) decrease from a 17 at relapse to a stable 8 at Easter time 2018. We noticed though that she seemed to have increase leg pain. During a stay for immunotherapy, the team ran her vitals and noticed that she had more white blood cell blasts in her blood – this was a sure sign of another cancer, AML. Laurel was then diagnosed with an extremely rare cancer called MLL, which was *caused* by a chemotherapy drug, Etoposide. Treating AML and Neuroblastoma was like treating apples and oranges. From the date we received the secondary diagnosis to when she died, it was only 21 days. We decided to take her home to our little beachside home. She was on oxygen for a week and we had family and friends visit her. Someone gave her a beautiful bouquet of flowers and she took each flower out and handed individually to all of our people visiting her.

Laurel died in our bed between my husband and I in the early morning of June 15, 2018. We were up with her the night before, singing songs and reading and telling her she was the love of our life. I must have drifted off to sleep around 4 am. My husband stayed up with her and he watched her to take her last breath. He closed her eyes and woke me up to tell me she was gone.

I couldn’t believe how peaceful she looked when I cleaned her face and removed her breathing tube and the tape that held it to her. I washed her little cheeks and face and put her in a dress her aunt made her. We slowly took all the flowers we received in the home and placed them around her. We lit candles and said prayers and spoke to her and had to let her go. When someone came from the funeral home to pick her up, she carried Laurel in a blanket our family made her, flowers all around her, and our Newfoundland escorted Laurel to the van. It was the most devastatingly beautiful release of my life.

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?

Before Laurel was sick (and even after too), strangers would stop me and tell me how she looked like “an old soul” with those big eyes. Laurel was kind and gentle. She always gave things away. She loved ladybugs and pointed them out in books or whenever she saw one.

Laurel loved to dance and wiggle. Despite everything she went through, she only wanted to smile and comfort us.

Before she passed away, her Dad tucked her in one night and she touched his face with both hands and said clearly, “I’ll miss you Dad.” She was only 26 months old.

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?

I’m in my 4th year of bereavement this year and I am finally able to live the day-to-day without intense rage and anger for what happened to our sweet Laurel Pearl. My anger ruled my life for a few years. I remember being unable to see children for a long time, I could not even look at a family or friend’s child. I became pregnant with our third baby, Julia, three months after Laurel’s death. My pregnancy kept my sober – it allowed me to process what had just happened with a clear head. After Julia was born in 2019, I went on and off antidepressants to just get through the day. So much had happened in so little time, but it became better for me to feel these emotions instead of numbing them out with medication.

Our family keeps going because it’s simple – what is the other option? I can’t spend the rest of my days living in a dark basement wallowing in my grief. Boden and Julia deserve a happy childhood and the best from their parents. My husband and I pledged to keep going no matter what. Yes, it gets very difficult and the grief of our former life and the questioning of the “what could have been” is hard to not get wrapped up in.

There was one moment I remember though – and this is a moment I will never forget. We were inpatient in December 2017 and Laurel was asleep in the hospital bed. I crept out of the bed and went to wash my face. I was standing in the bathroom, 9 months pregnant and my face was probably looking ravaged and tired. I remember looking into the mirror and telling myself, “you are doing this – you are giving it your all – no matter what happens, she knows how much you love and care for her. Keep going, Leah.” And so, I did. That moment was a pivotal point in my life as a young mom. I forgave myself and God or Buddha or higher power. I acknowledged how hard it was and how hard it would be going forward. I surrendered.

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?

Well, I know not every family can take their child home, but that decision brought my husband and I great peace. I also decided not to bury Laurel, instead she was cremated. I think about that now as we have moved different states and I am able to keep her close to me. We had a porcelain vessel made to hold her, ordained with gold and turquoise. It reminds me of the Sea, of Moana, of Laurel.

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

The Roost has taught me to process Laurel’s death in a holistic way. It has allowed me to meet other bereaved cancer moms and dads that I would otherwise not have known. I learned that I don’t have to go through this grief journey alone and I do not have to feel terrible inside for all of the trauma we went through.

My heart and soul are aligned with Rett’s Roost’s mission. We will grieve as parents for the rest of our lives. But we must forgive ourselves at some point and this organization has helped rebuild my mind, body, family, and community.

The Ojeda Family

The Ojeda Family lost their son Jayden (aka Beanz) on October 6, 2019, which was also his 15th birthday, to osteosarcoma bone cancer. Jayden was the third out of four children in the family and was very close to his siblings, Sacaria, Jorge, and Jena. His mom, Alicia, describes him as the glue that held the family together. Jayden was a phenomenal, competitive soccer player, so when he started to complain of leg pain, his mom Alicia, thought it was just a regular sports injury. 

On March 30, 2017 Jayden fell while doing tricks with a soccer ball. He called his mom three times from school that day complaining of leg pain. Alicia picked him up from school and brought him to urgent care, thinking that maybe he had a small fracture. This is where their nightmare began. Once a fracture was ruled out, the family was sent for additional testing, ultimately leading to the diagnosis of osteosarcoma of his leg bone. Alicia remembers feeling like her soul had left her body when she heard the word cancer, but she felt very confident that her strong-willed son would prevail. 

Over the course of the next three years, Jayden went through so much. Even after 26 rounds of chemotherapy and limb salvage surgery on his left tibia, the cancer continued to metastasize. Jayden also underwent palliative radiation and oral chemotherapy medication, but ultimately his body could no longer fight, and he told his family that he’d live until he turned 15. True to his word, on his birthday, Jayden took his last breath. 

Since losing Jayden, the Ojeda’s world has been flipped upside down. Their lives have completely stopped, yet the world moves on. Alicia feels it is very difficult to function in life now, as a piece of her heart is in heaven. Three years later, the pain is worse than ever. Alicia says that, “Grief of a child doesn’t get easier; you just realize that your child is going to be gone forever.” 

Jayden loved love, he loved life, and most importantly he loved his family and made sure everyone knew that. He was the most caring, selfless, sweet teenager that you can possibly meet, always going out of his way to ask people “how are you?” or “how is your day going?” even when he was going through the worst days ever. Jayden’s favorite things other than his mom and siblings were soccer, Marvel and DC comics, raccoons, and the ukulele. He loved playing with the younger kids in the hospital and being the “Mayor” of his floor. Truly, he was a shining light. He told every kid with cancer he met, “to never give up, and to never lose hope.”

Osteosarcoma is considered a “rare” form of cancer and typically occurs in pediatric patients. Because of this, it receives very little funding for research and trials. The chemotherapies that are used today are the same ones that have been in use for the past 65 years. Jayden’s mom, Alicia, wants the world to know, “Pediatric cancer does not have a face until it is your child. I was not a pediatric cancer mom until suddenly I was, and I was not a bereaved pediatric cancer mom until I became one. These kids deserve more than 4% [of federal funding] and until we start to care about pediatric cancer as a society nothing is going to get done. We need to raise awareness for our children because they are our future and don’t deserve to suffer at the hands of antiquated cancer treatments. We owe it to the kids that have passed from this horrible beast and are not here to advocate for their peers.” 

The Ojeda’s traveled from Florida this summer to attend a bereavement retreat in Saco, ME. Alicia reported this was one of the best grief retreats she and her family had ever attended and were very grateful to make connections with other bereaved families.

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 Jarboe Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.

June Helen Jarboe almost came into this world prematurely at 21 weeks gestation. I (her mama) was hospitalized for a week while in active labor, and then suddenly the labor subsided. I went home on bedrest for 17 weeks. June was born a beautiful, healthy baby. About two weeks after her birth she started having a 4-5 hour “witching hour”. Our first child never experienced this, so it was much different with June. I always attribute it to her being uncomfortable. It lasted about 4 months and that’s about the same time June stopped sleeping in her crib at night. She would only sleep in my arms. When she cried, to me, she sounded like she was in pain. We slept together most nights of the week in our guest room. At the same time, she started having incredible night and day time sweats. When I would take her out of her crib at nap time she had a halo of sweat around her head. She stopped being able to take bottles more than 2 oz at a time and she became very constipated. She was white as a sheet and very lethargic. Thats the time I found the tumor in her belly. She was up crying all night for three consecutive nights and it was then I stripped off her clothes and began examining her body. It felt like she was screaming in pain. I turned her little body side to side and thats when I saw the lump. The following day I brought her to urgent care and the pediatrician told me she could feel her entire spleen which was abnormal. So either she was sequestering blood due to some viral process or she had cancer. I blacked out. Only a few hours later the doctor called with her lab results saying she was severely anemic and we were to go to the hospital for a blood transfusion. It was that fateful night we received the diagnosis of a tumor. Our lives have never been the same.

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

Our entire lives were up-ended with June’s diagnosis. We learned that her prognosis wasn’t good, however given all of the unknowns she might have been able to overcome the disease. When we found the cancer, it was solidified to a main tumor and a smaller tumor that had grown off of it and around her aorta like a vine. She, unlike many other children diagnosed, was very young (under 1 year) and the disease had not entered her bone marrow. It was contained to the tumor and one lesion on her liver which the tumor abutted. There were promising aspects to her diagnosis and our family survived trying to suckle every bit of hope out of the situation that existed.

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.

June’s treatment (we were told from the beginning) was going to be 18 months long: 5 rounds of chemo, surgery to remove tumor, a tandem stem cell transplant, followed by radiation for a month and 7 months of immunotherapy. Taxing. Exhausting. Life-threatening treatment. June completed 4 rounds of chemo and the tumor responded positively by shrinking immensely. For the first time, we were able to see our baby eating, sleeping, comfortable. Hindsight is 20/20, but truthfully it made us understand she had been sick her entire life to see her happy and herself. We began treatment in June of 2021 and by the fall only 6 months later, June was cancer-free. Her scans after her surgery and a fifth round of chemo were completely CLEAR. We went into two stem cell transplants at Boston Children’s (back to back) incredibly hopeful. We spent two months (with a 3 week break between at Christmas) at BCH watching our baby suffer the most enduring therapy. We watched her almost die multiple times, but in the end she always recovered. Our strong girl put up the greatest fight and did everything we asked of her. We returned home and throughout the process June had acquired multiple line infections, When we arrived home at the end of January, she got really sick and we were readmitted to the hospital for long term antibiotics for two weeks. They removed her line and she came home again. They wanted to give her body a break, so they delayed radiation for a month. We spent (what we hadn’t know at the time) the last month of Junes life sleeping, playing, eating a little her and there, but just enjoying our lives again. Full of hope. June didn’t make a comeback like she had previously from the first transplant, but they had told us she was going to be weak for quite some time. The week June died we thought she had come down with a virus going around. We brought her to the hospital because she was weak and unable to eat. During that admission they decided they would start radiation and do the mapping. When she came out of the mapping they told us the cancer had returned ten-fold. It was all over her body, We took our baby home that afternoon and she passed away two days later in her mama and daddy’s bed.

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?

June was an amazingly spirited girl. She was the happiest, always, despite life’s circumstances. She completed treatment with beauty and grace. She is and was our angel and she will forever be the strongest person we have ever met. During treatment, June loved music therapy. It brought her so much joy. We always thought she would grow up to be a musician of some sort like her grandfather, Chief.

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?

We are handling our grief very differently, however we are understanding of one another. We have been through hell and back and fortunately our family has continued to grow stronger because of it. Individually, we attend therapy, and we participate in a grief group at the Center for Grieving Children. We attended Rett’s Roost bereavement retreat which has opened a new network of support for our family. We have made some wonderful friends throughout the process. For me (mama) I need some form of meditation every day, whether it be exercise or actual guided meditation, or yoga. I find that if I let myself feel all my feelings for 10 or 20 minutes per day and allow myself to cry (my favorite form of moving emotion) I am able to honor June and move on with my day as a mom to a 6 month old and 4 year old. Our family is trying to live life to the fullest because our sweet June is unable to and with us we carry her memory and talk about her always no matter what we do or where we go.

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?

Find someone that you can talk to (when you are ready) who has been through what you are going through. It helps me most to talk with my friends who have lost a child. Find a therapist you love and who will support you during this tender and profoundly vulnerable time. Find a way to self-transcend. Look within yourself, you have all the resources (although you may not know now) within you to overcome life’s worst hurdle of losing a child and you will be okay. I wish I had more resources, however this is what I’ve found most helpful.

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

Rett’s Roost has opened a door for our family that did not exist. It has helped us in our grief journey to not feel so alone. We have found lifelong friends through Rett’s Roost and although the most unfortunate circumstances brought us together, we are forever grateful that this opportunity presented itself. Thank you Deana, Jim, Evie and Rett.

Alister’s Family

I met Amber and Eli at one of our Grief is Love online retreats for parents during the pandemic where I first heard of Alister, their youngest child. Alister was born with a rare & complex genetic disorder called Alagille Syndrome, which affected his liver and heart. Over the first 2 years of his life, they navigated the difficulties of having a medically complex child. Although he had many doctors’ visits and a long list of life-long medication, luckily, Alister’s life was not at risk. His older siblings adored him and the family felt complete.

Out of nowhere, on July 8, 2019, Alister was diagnosed with acute lymphoblastic leukemia. It was not tied to his genetic disorder but his already fragile health made it very hard for him to handle the harsh chemotherapy treatments. Alister was able to get into remission, but sadly died of septic shock due of a fungal infection 7 months and 3 weeks into his treatment in March of 2020, right at the start of the pandemic.

The family arrived at our retreat hoping to ease their sorrow by meeting others. It was a little harder for the teen siblings, but Abigail (age 6), the youngest of the three, was spunky and warm and clearly excited to be on a trip away from quarantine life. On the second day, Abigail, happily playing with the other kids her age, fell awkwardly and broke her arm, badly. Eli took her to the local hospital where they learned that the humerus was completely severed and Abigail would require immediate surgery at Boston Children’s Hospital.

After years of dealing with hospitals and emergencies, how could this happen on the one weekend where they were trying to focus on healing? Amber, Felix, and Ashleigh stayed at the retreat (since only one parent could go with Abigail anyway). The mood at the retreat became somber, but also supportive. As Amber told us on the last day, “They were with the best people to have something bad like this happen. Because we all know the triggers to this kind of trauma.”

Eli returned at dinner on Saturday with Abigail, to a table-full of unicorns and balloons. All the other kids came up to her and signed her cast and it really was a special reunion that brought us all closer. They somehow had the energy to come down to the bonfire, and in our closing circle the following morning, I gave gratitude for their grace and grit. I was amazed with how the entire family handled the very unfortunate situation. And I was reminded of how bad luck seems to follow families around for a while after the death of a child. That is why we offer the support that we do. Our programs are truly needed and appreciated by these star-crossed families.

The Rouleau Family

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

Eliana was diagnosed at 5 months old on December 24th, 2017 with Acute Myeloid Leukemia .

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

Eliana started initial chemo treatment in February 2018, which the cancer didn’t respond to. She almost died from a staph infection. We were able to start palliative care after the cancer came back. She was able to come home and enjoy experiences every baby gets to have. After being home from March through September with no complications, she woke up one day not feeling well and having her eyes cross. After having a scan done, it was found that the cancer had spread to her brain. Within a week of the scan, she passed away. We were given the chance to bring her home under hospice care, and are still so grateful for her medical team who went above and beyond to help us bring her home to die. She passed away in our arms and in no pain on September 17th, at 14 months old. 

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

There is a missing part in our family. We take peace in knowing what our faith teaches regarding where Eliana is, but it still doesn’t take the pain away. There were times where we had no words to express how we felt, or how we could move on in our lives without Eliana. Adrian and I are grateful to have each other to share the burden and cry together. Thankfully, we had a very good support system that checked in with us and reached out through the first year. We still have good connections with those individuals, and they help keep Eliana’s memory alive.

What helps you in your grief now?

Our faith has been integral during the journey we went through with Eliana, as much as after her passing. Adrian and I talk about her and tell our friends and family to not be afraid to share their memories with us. Counseling continues to give me a safe place to process all we went through. Running is another outlet for me to take care of myself and let out the sadness in a positive way.

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

No other children, at the time. We have been blessed with another child since Eliana’s passing, though.

What made your child with cancer unique?

So many people say that she was a bright light in this world. Our pastor told us stories of parishioners that came back to the church because of her presence, as well as what she was going through. There was a sense of peace and joy when being with her. She loved life, and did not let her cancer stop her from exploring the world and enjoying all things. In her 14 months, she experienced more than what many get to do in a lifetime.

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

Eliana loved to snuggle, eat ice cream, tubby time, visit friends and family, cuddle with Mr. Monkey, read, go to the library, watch the fish in her fish tank, dance, eat bananas or pancakes, and play with her little people toys.

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

That more research needs to happen for infant (and childhood) cancer cases.

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

Knowing that we were not alone in our grief- other families can relate to the journey we went through, and continue on.

What other organizations, if any, did you utilize during and/or after treatment?

Joy’s Network (NH)
B+ Foundation
Partners in Health
Childhood Cancer Lifeline (NH)
Aubrielle’s Hope (NH)

The Sweger-Nesbits

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

December 16, 2015 Acute Lymphoblastic Leukemia

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

We found out early on that William had a rare subtype, so they wanted to go to a Bone Marrow Transplant as soon as possible. He had the BMT in April of 2016 and did amazingly well. He relapsed in January of 2017 and we were sent to CHOP for a clinical trial. The trial (Car T therapy) had been fairly successful up to this point. Unfortunately, it was not for William. We were sent back home to Penn State Hershey Children’s Hospital to try radiation for what cancer remained. William just kept hitting roadblocks and having issues. Our final week with him, William had been sedated and was not able to talk. I think that is one of the hardest things to accept; when we went into the hospital for the last time, we didn’t know that would be the last time we would actually get to hear William’s voice. One of the last memories I have with him conscious is one with fear in his eyes, as he didn’t know what was going on. Although the nurses told us that William shouldn’t be able to communicate with us that last week, he did. He would squeeze our hands when we asked him to, or when we were talking to him. His strength through it all amazes me to this day. In his final hours, William was surrounded by myself and my husband, as well as two of his sisters (all four were given the option to either stay or go, and two just didn’t think they could handle it). When it came down to it, my husband had to tell William that it was okay to let go. William was always more concerned about those that he loved rather than himself, me especially. Derek had to tell him that I would be okay; that William could go now. Walking out of that hospital without my son was the most difficult thing I have ever had to do, and as I continue to put one foot in front of the other every day since.

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

There really are no words to adequately describe how losing your child feels. It feels like your heart has been completely ripped out of your chest and the hole is just left hanging open. Early grief is like a fog. I felt like a stranger in my own skin. I didn’t feel like I fit in or belonged anywhere. I was me, but I wasn’t. I really just wanted to run, anywhere. I wanted to keep moving. Time should’ve stopped the moment I lost my son, but it didn’t. I just kept getting knocked around by it.

What helps you in your grief now?

Remembering the kind hearted boy that William was. He was always putting people before himself and he lived each day with a positive attitude and a smile on his face. Even on his really difficult days. So I honor him by doing my best to live the same.

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

We have four girls that were ages 16, 15, 14 and 5 at the time of William’s death. Of course this was not easy for them, but we thought we did what we could to help them and thought they were handling it as well as could be expected. It wasn’t until over a year later that we realized one of our daughter’s wasn’t handling it nearly as well as what we thought she was. She was suffering from a deep depression that she hid well. I just wish there was more support for siblings that have lost a brother or sister, and more education for bereaved parents as to what to look for.

What made your child with cancer unique?

His love and skill for fishing that was years ahead of his time. His quiet way and humble spirit. He drew people in with his smile and melted their hearts with his loving personality. He always put others before him, always had a smile on his face and always was the first to jump in and help a friend out when they needed him.

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

William loved his German Shepherd Berkley, ice hockey and sprint car racing. But his true love was fishing. William lived to fish. My husband would have to keep fishing rods in the vehicle because any time William would be discharged from the hospital, they would go straight to some water to fish. William had a skill about him, way beyond his years, and was actually invited to help on a fishing boat over the summer once he turned 16 because he impressed the captain so much.

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

It touches every aspect of your life. Things that you wouldn’t even expect it to. It takes an immense toll on the entire family, whether you see it or not. To have to watch your child suffer and not be able to fix it is a pain that no parent should ever have to experience. And the pain and suffering that the child has to endure is beyond comprehension.

How did you find out about Rett’s Roost?

Another bereaved family that we met told us.

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

I think it’s the memories that were made. The fact that the entire family gets to attend is so special. It is such an amazing time with amazing people that truly understand like no other. From the places we go, to the things we get to do, and the crafts we get to make, all while being surrounded by other bereaved parents. It’s a time spent like no other.

What other organizations, if any, did you utilize during and/or after treatment?

Catch A Dream Foundation, NEGU, Jeff Musser Foundation, Camp Nate, Young Life

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. 

The Strong Family

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

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

How did their treatment progress?

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

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

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

What helps you in your grief now?

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

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

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

What made Caden unique?

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

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

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

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