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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.

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

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