Skip to main content

Our Families

Older posts

The Bliss Family

Brittney Bliss was born May 27th, 2018, and she was the picture of perfection. She joined her older sister, Trinity, and our family was complete. Brian and I had tried for over a year to conceive and suffered a miscarriage before Brittney. She was our rainbow baby, just brought such light, love, and happiness to our world.

She showed love for music at an early age, dancing to Taylor Swift and songs like Old Town Road (she knew the lyrics by two years old).  Brittney loved to dress up as Moana, Elsa, and Isabela from Encanto. She had a closet full of Disney Princess costumes that she would wear any day. She was funny, and had great comedic timing (she got that from her dad). She was just a happy little girl, excited to grow up, ride a bus, start kindergarten and just be a kid.

In May of 2022 Brittney was just a few weeks shy of turning four when she was experiencing what we thought were unusually bad seasonal allergies. We brought her to the pediatrician where she was diagnosed with a double ear infection. About a week later we took her back and the left side had cleared but the right was still infected, at this point we had also noticed some raspiness in her voice and white stuff coming from her ear. That evening, we started to notice some facial asymmetry, mainly with her smile or when she spoke.

The pediatrician said they thought it might be Bell’s Palsy and told us to bring her to the ER where they ran some labs and a gave her a CT scan. The next day we were told they needed more images, so we did another CT scan and then an MRI. Once an MRI was mentioned my brain started working in overdrive; having worked in the medical field I know these scans are ordered for very specific reasons, and when I learned it was with contrast, I knew they were looking at—or for—something. As I stood in the hallway waiting for the results, I was approached by the head of ENT, who told me there was a mass in her right petrous apex—believed to be Langerhans Cell Histiocytosis—and that we would be transferred to Boston Children’s.

This can’t be happening, I thought. How? Why? And what even is Langerhans?

Little did I know that Brian was being told the same news, standing alone in a room wondering where we were and what this all meant. When we finally came back to the room, I started to google and try to learn as much as I could about what we might be facing and what this would mean for Brittney’s life. That night Brian stayed with Brittney at the hospital, and I went home to shower and pack, along with breaking the news to our older daughter, as she had just spent the day at the prom and we didn’t want to tell her prior.

Sunday May 8th, 2022, Mother’s Day, as we waited for our ambulance transfer to Boston Children’s, Brittney was in good spirits. She gave me the funniest card and wanted to play hide and seek and have a dance party even with being attached to her IV pole. The whole family was together and making the most of the time as we waited. It took until 10pm that night for our ride and we arrived in Boston after midnight, settling into our room on the neurology floor.

Just a few hours later the rounds of department teams started to pour in. Again, we were told it was textbook Langerhans Cell Histiocytosis, a highly treatable condition. Sholty thereafter, another team told us they thought it was just a really bad ear infection that needed to be drained. A wave of relief washed over us. We packed up all our things and made our way to the OR, ready to leave as soon as the procedure was over.

As we were signing the consent for sedation the team walked out and said there had been a change of plans; that they were going to do a biopsy and keep her while waiting for the results.

We felt so deflated. Why a biopsy? What changed?

As they took her back, Brian and I sat waiting and replaying what just happened and what it could mean. When Brittney was out of surgery, we were able to give her popsicles as we waited to be readmitted to a room upstairs, where we’d hopefully get the results soon.

On Wednesday May 11th we met another new team, Oncology Small Tumor. This was not the team we were expecting.. The team told us that Brittney’s biopsy had come back, and she was diagnosed with Embryonal Rhabdomyosarcoma, stage 3/4 (intermediate risk) due to location. It was classified as Parameningeal (outside the brain) Embryonal Rhabdomyosarcoma in the middle ear and the Petrous Apex of her right temporal bone, impacting her facial nerve and vocal nerve (thus the stroke like appearance), making surgery impossible.

Our precious baby has cancer. This is a nightmare. This can’t be happening!

Alone in a hotel in Boston, I sat on the shower floor and let myself ugly cry the first time. I pulled myself together, got ready and headed back—just the first of many times we had to put our emotions on the back burner to be present and strong for Brittney.

Over the next few days Brittney had another MRI and PET CT to determine if there was any spread prior to beginning treatment. Thankfully there was no spread; just the primary tumor. Finally something positive.

The doctors told us they would take an aggressive approach—at least a year of chemo and radiation. With her cancer and staging, we were given a 70% five-year event free prognosis. We were told that before Brittney could start any treatment we had to decide if we wanted to preserve one of her ovaries since the chemo’s would make her infertile.

Another wave of defeat. As a parent we make so many decisions for our kids, and in the world of cancer you make even more, never knowing which are right or wrong. Just doing the best you can with the information you have—the wellbeing of your child always at the forefront.

We began chemo on May 20th,  a week before Brittney’s fourth birthday. We settled into our room at Boston Children’s. We had no idea what to expect. We were told all the possible side effects, but ultimately the first round is kind of a trial to see how they will be affected.

The first round was awful. She was angry, confused and scared. How do you try to even explain to a four-year-old what is happening—and why?  The next day we were able to head home. The treatment really wiped her out. She just lay on the couch, like a wet rag, not wanting to move or do anything. We felt helpless, just wanting to make her comfortable and happy.

As we settled into this new routine of weekly chemo treatments, appointments in Boston and doctor visits, Brittney still wanted to ride her bike, scooter and be outside. She was even the first to take a swim in the pool, in May! I had just come home, and she was swimming in her underwear while Brian was vacuuming the pool, she asked me to join her, even though the water was cold and I was fully clothed, I took no time to jump in, because that was what she wanted, and I just wanted to make her happy. She was able to celebrate her birthday with friends and family.

Shortly after her hair started to fall out. That beautiful, long brown hair. So her and daddy shaved their heads together!

July 4th was Brittney’s next round of heavy chemo. Because it was due on the holiday we had to be admitted again. This time they felt they had a good plan to ease her pain. And boy did it work! Brittney was so full of energy, she would barely be in her room for more than 30 minutes, unless she had to. She learned to ride a tricycle for the first time in the halls of the hospital. She peddled along and Brian and I followed pushing her IV pole. We did so many laps that day.

In August we moved to Boston to start Brittney’s radiation treatment: five days a week for a total of 30 rounds. We were lucky to be living in an apartment outside the hospital at Christopher’s Haven, a home for kids when cancer hits home. This provided Brittney with other kids to connect with, and she made new friends right away.

During this time her symptoms began to improve, her face and voice appeared better, giving us hope that this was all working, we were making progress and soon this would all be behind us. Her last round of radiation was September 30th. She had an amazing celebration, rang the bell and her favorite singer at Quincy Market even came to perform!

She had an MRI at the end of October, which showed the tumor was getting smaller. We felt like we could see the light at the end of the tunnel.

In December, Brittney had what we thought was a routine MRI. The scan showed that while on active treatment, after many rounds of chemo and proton radiation, Brittney’s cancer had spread to the meninges around her brain. This is called leptomeningeal, a terminal diagnosis.

We heard the dreaded words no parent should ever have to hear. There is nothing to be done. There’s nothing you can do. We were told to go home and “make memories,” that we had about 4-6 months left with her.

Shortly after she had a scan to see if it spread to her spinal cord as well, which it had. We were given a few things to try, so her original treatment was abandoned, and we were in the trial-and-error phase. All of this took place just a few weeks before Christmas. Our family was devastated.  

We began to scour the country looking for hope; something to try and give Brittney a chance to defy the odds. To be our little miracle. She underwent more testing with PET CT. We traveled to Philadelphia for second opinions, all of which were the same. Clinical trials would not accept her. There was no roadmap for a situation like Brittney’s. It was more about buying her time until her cancer responded to the right treatment.

In February, Brittney was hospitalized to begin a new chemotherapy using doxorubicin, the red devil, and high dose ifosfamide. Sadly, the ifosfamide caused her to develop neurotoxicity, one of the common side effects. She began having what appeared to be seizures and was rushed to the ICU. This was one of the scariest days in her treatment. We had no idea what was happening, her body thrashing, tongue beginning to swell. We truly didn’t know if she would make it through. It was determined that she needed to be treated with methylene blue, often used to reverse the toxicity. We felt so helpless. I spent that night listening to worship music to help calm and just praying that she would recover, that we would get our little girl back.

Surprising the team, as soon as she was weaned from sedation she started to speak and within a day was sitting up, eating and watching her shows. We were downgraded from the ICU and a few days later went home. But she was not able to receive the full round of chemotherapy due to the reaction, so we had to pivot yet again as to what we do with treatment going forward.

In March we moved Brittney’s care to Connecticut Children’s Hospital, as we had been consulting with a rhabdomyosarcoma specialist there and he wanted to try the same chemo again, but at a lower dose. Sadly, the same thing happened, and Brittney was rushed to the ICU for another treatment of methylene blue. She quickly recovered this time, but then started to decline and was rushed for a CT. There was some hydrocephalus in the ventricles of the brain and after they tried to treat with medication, she had to undergo an emergency surgery to relieve pressure in her head later that evening. Wheeling our little girl to the OR for an emergency surgery at 10:30 at night was just another gut punch. The pressure in her brain was so high it didn’t resolve with the release, which in turn led to a second surgery a few days later, to place a permanent shunt. Again, Brittney was a champ, and made a full recovery.

After about a week in the ICU, we headed home and then began a four chemo regime, to try and treat her cancer. In April, on Easter Sunday, while at home Brittney experienced her first seizure, a side effect of leptomeningeal disease. We rushed to the ER, where they spent days trying to get the seizures under control with various medications.

Once again, we were left in limbo. I remember praying just to hear her voice again. Thankfully, the fourth medication worked, and she was seizure free for over 72 hours. We finally heard her sweet voice again.

Once home we adapted to yet another new routine, with four seizure medications needing to be given in the morning and evening, also having to watch for seizures and how to handle them.

With Brittney’s fifth birthday quickly approaching, we knew we wanted to make this one special. We put out a request for cards, the goal was to get one from every state. The response was overwhelming. Cards and gifts began to arrive, and Brittney loved opening them!

The morning of her birthday, we were so excited. We had a special cake made. We decorated our front lawn with all kinds of decorations. But something was off with Brittney. Parent instinct kicked in, and after a call to the doctors, we headed to the hospital, hoping it was low counts.

At the hospital, Brittney suddenly appeared to be holding her breath and turning red. The team was quick to respond, and after some oxygen she quickly recovered—almost as if nothing happened. As a precaution she was hooked up to EEG overnight, and no seizures were detected.

But it was later determined she had possibly suffered a deep brain seizure, not detectable with EEG. EEG was removed, and we thought we were in the clear, but then things went downhill. They were able to get her in for a CT, and everything looked clear. She was already scheduled for an MRI, and due to the holiday, it was not able to be moved up. As she woke up from her scan she started throwing up, and having another seizure. This was the moment when we really knew things were not ok.

Over the next few days, the seizures returned, and more oxygen was needed. Imaging was done and our worst fears were staring us in the face: Her cancer had just continued to spread, her spine was riddled with it. The images were unbelievable. She was moving less. She barely spoke, wouldn’t eat, and needed more oxygen and medications to keep her comfortable. We started having the once unthinkable conversation: how we could bring our little girl home to spend her remaining time.

Sadly, we were never able to bring her home. Cradled in our arms, Brittney took her last breath on June 6th, just a week and half after turning five. She had bravely battled cancer for just over a year. 

To say we were heartbroken is an understatement. We were devastated. Destroyed. Utterly lost and in shock. So many people had been following her journey, praying for her. We truly believed she was going to defy the odds.

We miss her every moment of everyday! There is a veil that covers life now. Nothing feels right, and there is a void that will never be filled.

Since her passing, the only thing we can do is keep her memory and legacy alive and try to be a voice and advocate for childhood cancer! So, we created Brittney’s Believers, a non-profit where we work to help advocate for childhood cancer, support families, and fund research to find a cure. We wanted to give back and be the resource that so many were for us during treatment.

Some of the things we remember most about Brittney:

  • Brittney loved to learn; we were always amazed how quickly she would pick things up.
  • Her favorite bedtime story was Baby Beluga, she loved to sing along when I read it.
  • Her song was “My Girl,” which I sang to her since the day she was born.
  •  Brittney loved to play with makeup. She had the best color combinations and flawless technique (if you like the bold smokey blue eye).
  • She gave the best manicures and pedicures. Just ask Brian; he was a frequent client of hers.
  • When she was a baby, Brittney would always rub our face as she took a bottle and rubbed her eyebrows when she was tired. She gave the best eyebrow rubs, a special love language she had with Brian and I.
  • Brittney always looked up to her older sister Trinity. I remember how excited Trinity was when we told her she would have a little sister. To hear them laughing would melt my heart.
  • I would call Brittney my little shadow as she would follow me around the house. If I left a room, you could bet that little girl was coming to find me. I hope she still is.
  • She was sassy yet sweet, gentle yet protective, shy yet a performer. She was everything we had ever dreamed she could be and so much more.

To our sweet Brittney Gail: You, my dear, are a remarkable little girl, whose bravery and strength surpasses what most of us could ever dream of. You have a shining light within you that can outshine the stars, and you’ve taught us all so much about courage and love. We pray that you are dancing in the clouds, making the angels laugh, and are still able to feel the immense love we have for you. Daddy, Trinity, and I will carry you forever in our hearts.

We pray you visit us in our dreams, and we know we will see you again one day, lovebug.

Elena and Brian attended our Forever Healing grief retreat for parents in November of 2024. This is what she had to say about the experience:

We want to thank the entire Rett’s Roost organization and supporters that helped to make the Forever Healing Retreat a truly warm, welcoming and comforting environment for us bereaved parents. This was our first time doing something like this and the amount of love, energy, thoughtfulness and detail that was put in was truly incredible. Being able to talk about our daughter, Brittney, and our experiences during her journey was cathartic, because we knew it was a safe and welcoming space with everyone there. Allowing us to share about our sweet angels, as well as trying to help heal with mental and holistic tools, we really felt this was a much needed experience, and look forward to continuing to connect with the cohort throughout the year at the monthly meetings.

Gabriel’s Story

When Gabriel was just four years old, in 2016, his mom, Rachel, noticed an unusual discolored lump on his body during bathtime. Gabe didn’t know how it came to be so Rachel contacted his pre-school and father to ask if he had hurt himself at any point. No one had seen Gabe get injured or remembered him crying. Rachel asked Gabe’s father to take him to the hospital while Gabe was visiting him that weekend. The doctor examined Gabe and determined that it was probably just a hematoma (a bruise with swelling) and that he must have injured himself while playing. This nonchalant response felt odd to Rachel, because what four-year-old kid with a bruise of that magnitude wouldn’t end up crying to an adult at the point of impact.

Tragically, this lump was soon pushed out of Rachel’s mind with the sudden unexpected passing of her dad, who she was very close to. Understandably, she became preoccupied with the grief of that loss and since the doctor said it was just a bruise, it quickly took a back seat to more pressing issues.

A few weeks went by and Rachel realized that the lump was still there, and it was now significantly larger. Knowing that bruises shouldn’t increase in size weeks after an injury, she contacted Gabe’s pediatrician for a second opinion. Gabe’s doctor was also visibly concerned at the appointment, and decided to call the hospital to have him seen immediately.

Waiting alone in the examination room with Gabe, Rachel felt anxious and scared, while Gabe played like a normal, now 5-year-old little boy, unaware of the seriousness of the situation. The doctors at the hospital felt that perhaps the lump was a hernia, and dismissed the pediatricians urgency. They told her they would call Rachel to schedule an appointment.

At home, Rachel waited a week with no call. She had to ask her pediatrician to call again. Finally an appointment was made for a hernia consult with a pediatric surgeon. They were absolutely certain, based on the location, it must be an inguinal hernia.

On the day of the appointment, Rachel anxiously drove into Worcester to UMass Children’s Medical Center. She was a nervous wreck when she arrived. Once in the room, they waited a long while for the surgeon who had been caught up with another difficult procedure that morning.

When the surgeon finally arrived, he took a quick look at the mysterious lump and then went silent. “I don’t think this is a hernia,” he said. He turned to his assistant and told him to order an ultrasound immediately.

The ultrasound tech seemed exhausted and frustrated as the doctors had convinced her to stay open a little later to fit Gabe in. As she moved her wand around the mysterious lump, she began to soften. She started asking Gabe questions and telling him how awesome he was doing.

Rachel expressed to us, “My gut began to sink. The technician’s demeanor changed so much that I realized at that moment something must be really wrong with my son.”

The technician told Rachel she would need to speak to the radiologist and stepped out of the room. Then she came in to take a few more images and left again. The next time she came in, she said that the radiologist would be in to speak with them soon. Rachel understood at that point that something wasn’t right, maybe terribly wrong.

After a long while waiting, the pediatric surgeon and his partner arrived through a different door. The surgeon pulled up a chair and sat down eye level to speak to Rachel (another foreboding sign of what was to come).

He told Rachel calmly that there is a tumor-like growth and that he will be putting in a referral to oncology. He claimed it could still be benign, but in Rachel’s gut (and probably in the doctor’s too), she sensed it was likely not.

The next week or two were a blur. They met with an oncology team and began some further tests. Finally the oncologist and surgeon decide the best plan was to remove the tumor and run a biopsy.

On an early Wednesday morning Gabe went in for his first surgery.

“After they wheeled him away, I went to sit outside. At this point, the worry and grief and pain washed over me and I just broke down into tears. I hated being away from him in this situation.” Rachel shared.

For Rachel, time felt as though it was moving exceedingly slow. Finally, the surgeon came out to report that all went well and that they could go see their son soon. In the recovery room with Gabe, the medical team arrived and told them they would hear from them by Friday. They used the cliché phrase, “No news is good news.”

Friday came and went and Rachel remembered the doctor’s words that no news was good news. She held out hope but deep down she was struggling. Her mother’s intuition was indisputable. Monday morning arrived and Gabe went off to school–he was in pre-K at the time. Rachel went through her morning routine–got ready for work and then went for breakfast at Dunkin. While picking up her coffee, she received a call from the hospital to schedule a bone scan. Confused, she asked why she hasn’t heard the results of the biopsy. The scheduler apologized and said she did not have that information.

Not long after, at work now, Rachel’s cell phone rang. The doctor was on the line to discuss the biopsy. Next came the dreaded word everyone fears most… It was CANCER. At that moment, Rachel just sunk into a chair and tears began to pour. He continued to talk but she could not hear or understand a word he was saying.

“That awful C word just kept buzzing in my ear. MY son had cancer. MY sweet, full of life and love, little boy. This can’t be happening. This is stuff for sad commercials and movies. This type of stuff doesn’t happen to people we know.”

Rachel’s boss told her she should go home, but at home Rachel could not sit still. Despite, or maybe because of her growing anxiety, she decided to go run errands. She didn’t know how to fix cancer but at least she could put some groceries in the fridge and check things off of her to do list. Walking through the store, she was in a total daze. She looked at each person just going about their normal lives and almost screamed. How could they go about their day when her whole world was crumbling. As she went through the motions at check out, it’s almost as if she was hovering over her body. Everything felt surreal, like a really bad dream.

After Gabe was officially diagnosed with Ewing’s Sarcoma in May of 2016, the treatment process began almost immediately. He went through 14 rounds of high dose chemotherapy administered over approximately 5-6 months. He had to receive 6 weeks of daily radiation. He had numerous blood transfusions. Hundreds of blood draws and injections. They were in the hospital significantly more than they were home. Chemo would often tank his blood counts so even when he would be allowed to be home, it never lasted long before they were once again in the hospital. At one point, he developed hemorrhagic cystitis in his bladder causing him to pee blood clots. He later had a bout of pneumonia that landed him in pediatric ICU and numerous fevers set him back in between treatments. Finally, on New Year’s Eve of 2016, Gabe received his final dose of chemotherapy.

During Gabe’s treatment, Rachel’s other two children bounced from family members’ to friends’ houses. She missed them dearly but needed to be with Gabe. Being a single mom at the time, it felt like their family was being torn apart. There were numerous late nights, trips to the ER, moments of guilt as there wasn’t enough of Rachel to go around. Childhood cancer affects the entire family. Gabe’s twin sister, Lily, was suddenly not able to see him much and she watched him being traumatized by medical procedures constantly.

Rachel will never forget the time she had to take Lily to the hospital with us for a few hours until a sitter could be available. She observed the doctors needing to hold Gabe down to access his port. She was in the corner cowering and trying to get Rachel to hold her. Why were the doctors hurting her twin brother like that?

Gabe got through his treatment thanks to his favorite superheroes: Captain America, Paw Patrol, Spiderman, and Marvel characters. He was comforted by cuddling with his mom and his favorite blanket. He loved the hospital nurses, visitors, and volunteers. And he proved to everyone how strong he really was when he often went to kindergarten after his morning radiation session despite Rachel reminding him it was ok to go home and rest. 

Today, Gabriel is 13 years old and cancer free. He is considered a cancer survivor because he has not had a recurrence in over five years. Gabe’s personality blossomed through his journey and as a 13 year old, he is gregarious, playful, and thoughtful. He and his two sisters, Lily and Haylie, are all good students, kind to others, and fun to be around.

Rachel and her family found so much strength through this experience. She learned who her true friends are, and met so many new, amazing souls that have also been impacted by childhood cancer. They found support with organizations like Why Me/Sherry’s House Worcester, MA, Hole in the Wall Gang Camp Hospital Outreach Program, Boston Children’s Hospital Childlife specialists, Cops for Kids with Cancer, Make a Wish Foundation, and Rett’s Roost.

“My son’s cancer was a blessing and a curse. We have so much good in our lives now because of all we went through. Childhood cancer shouldn’t be happening but it’s becoming more frequent. We have to put politics aside and make real changes to save our kids. We are destroying the world and our kids are paying the price.”

In 2020, Rachel met Jared, and in two years they were married. Their family finally felt complete. They all attended the Positively Healing Retreat at Medomak Family Camp in Washington, ME this past summer (2024). We loved meeting this beautiful blended family. Although we never know whether teens will enjoy the retreat experience, these three kids exuded pure gratitude and joy.

Rachel expressed to us what the retreat meant to her and her family:

“I talked freely about our cancer journey, had a massage, meditated, experienced an amazing Reiki session, made friends, laughed, cried, and watched my kids bond with each other and build beautiful friendships. This week in Maine could not have been better!”

The Danoff-Storcks

When you make the decision to have children, to bring life into the world, the moment they take their first breath they are in your care. You want to protect them, do everything you can to keep them safe, put them in bubble wrap, but you also need to let them run, jump and get scraped up.

As evidence of this, our daughter, Tilly broke her right arm in June 2020, but it did not slow her down in the slightest and she began going by the moniker Tilly “The Destroyer.” This also coincided with her summer jam/theme-song, “Seek and Destroy,” by Metallica. 

The cast was taken off after three weeks and the break was well healed on x-ray. In late November 2020 we noticed that Tilly was experiencing some atrophy and weakness in her right arm. Since it was the same arm she had broken in June, we thought she was just having some atrophy from the break. We saw an orthopedist and the plan was to do physical therapy for six weeks and if it didn’t help then the next step would be getting a sedated MRI done. 

Six weeks of physical therapy did not make a change in Tilly’s strength, so we scheduled an MRI for Tuesday, February 9, 2021. The MRI revealed a tumor in her cervical spine that was pressing on her spine and causing the physical impairment. Our world changed in an instant. Tilly underwent a nine hour spinal surgery where it was discovered that because of its location, the tumor couldn’t be removed, but they were able to get a biopsy and confirmed the diagnosis of a low grade glioma. After spending weeks inpatient at a rehabilitation center relearning to walk, due to loss of mobility resulting from her surgery, she began chemotherapy to halt tumor growth in March 2021.

Since then, she’s gone through a grueling 70 weeks of weekly outpatient chemotherapy sessions, with all the ER visits and hospital stays that chemotherapy brings. Tilly completed chemo July 2022 – but in terms of being at the end of her treatment, it’s more complicated. Because of the type of tumor and where the tumor is located, Tilly will never go longer than three months between MRIs for at least the next twenty years. All of the research shows that there will be periods of tumor growth, where she will reenter chemotherapy, and periods of stability until she reaches the age of around 25 years old, when she– and it– will stop growing. The survival rate for children with these tumors is very high, but depending on the extent of the tumor growth and side effects from multiple rounds of chemo, it can become a quality of life issue. For us, the goal now is to get Tilly to the age of 25 years old in the best shape possible.

Because we want to take advantage of the current tumor stability and set Tilly up best for the future, our day-to-day schedules are packed with appointments for occupational therapy, physical therapy, aquatic therapy, equine therapy, chiropractic sessions, and naturopathy. Though we are only at the start of this journey, this is without a doubt the most emotionally and mentally challenging thing we have ever gone through… and it has had an effect on our whole family.

As a testament to this, we sometimes “lose” our oldest daughter, Josephine. We lose her to her room, in which she does everything except actually sleeping– since Tilly’s diagnosis, she has moved her mattress onto our bedroom floor. We lose her to the iPad, where she listens to books and music, plays games, and makes videos of herself talking. We lose her to silence, creating an absence that is just as hard to bear as her cries for attention. We lose her even sometimes when she is making as much noise as she possibly can to try and be heard, seen, or acknowledged anywhere over, under, between or around the seemingly insurmountable amount of space Tilly, her younger sister by almost four years, has been consuming this past two years.

But of course we do see her, hear her, listen to her and love her beyond words. So, when we started to lose Josephine, we looked for ways to show her that we see her. At one point, Josephine panicked about a pain in her neck– since Tilly’s diagnosis, every ache and pain rings alarm bells in her head. We wanted her to know that we were taking her concerns seriously, that her needs were being addressed. We were able to get Josephine to art therapy and neurofeedback. These therapies helped her process what had happened. We are all feeling more grounded, but we continue to need support. We were recently able to escape for a weekend retreat with Rett’s Roost and connect with other families who knew what we were going through. The children bonded and were encouraged to play and have fun. They were allowed to just enjoy being children and run around like maniacs in a foam party, run with the goats and hold the chickens. We were able to connect and heal as a family through art therapy, pizza parties, drum circles, and aromatherapy sessions.

We are beyond grateful for Rett’s Roost, indebted to them really because they provide this amazing space, these amazing experiences where in the most positive and productive ways, the parents and kids are celebrated. They are all the celebrities, not just the one with the diagnosis, but siblings and parents as well!

The Velez-Rivera Family

It’s very common for doctors to avoid the testing that can lead to a child’s cancer diagnosis. We’ve heard it again and again, and it’s always the parents that end up persisting until they are finally heard. Often this leads to a late diagnosis in childhood cancers, which can be devastating in some cases. For Dylan, as for many kids, it was unrelenting fevers, which were attributed to consecutive viral infections.

Months passed and his fevers kept returning, and at a family vacation to their home in Colombia, the doctor’s there determined Dylan was anemic and needed iron. His mom, Diana (?), still did not feel satisfied with this diagnosis, however. Her son ate well, foods rich in iron, so how could there not be something else wrong?

Back in the U.S., on iron supplements, Dylan, now 3 years old, was experiencing new symptoms including leg and stomach pain. It was now the fall of 2020 and most of the appointments were being held virtually. However, in early October Diana and dad, Edisson, noticed that Dylan had mouth sores and an enlarged lymph node behind his ear. Finally a doctor would see him in person, and this doctor listened. She ordered another blood test at which point it was determined that he was not just anemic, but that he had leukemia.

Dylan’s mom told us, “As a mother we have senses that are hard to explain. I always knew from the beginning that something wasn’t right. But when the doctor told me about his leukemia It felt like a punch on my stomach, I couldn’t breathe. Many times I had panic attacks at night and my mind was thinking a lot about the future and worst case scenarios.”

Treatment for leukemia is long and grueling. There are many times when Dylan would have to be admitted for long stays at the hospital. Dylan had seizures at the beginning of the treatment and he had MTX toxicity. Steroids greatly changed his personality. Although Dylan remained resilient through all of the most toxic chemotherapy treatments, it was extremely hard on Diana and Edisson and big brother, Bryan. They missed the sweet, happy little boy they knew from before his diagnosis.

One thing that helped the family was to shift their thinking to focus on the present moment instead of overthinking in the future. While that sounds like an easy task, we all know how hard it can be to shift our perspective permanently to stay positive. Meeting this family at our Positively Healing Retreat in 2022, we could see how far they had come—they all lit up with gratitude and optimism that week.

Dylan has been off treatment since December 2022. But he still struggles with emotional trauma of it all. He needs an IEP at school and is very nervous about new situations and leaving his mom. When we saw him this month at our Childhood Cancer Awareness Month party, he seemed like a content and well-adjusted kid—likely due to the work his parents have done to ease his anxieties.

Dylan has a big brother, Bryan, and younger sister, Emily, that was born soon after the retreat in 2022. Bryan learned to hold everything emotional inside, likely not to worry his mom too much. He focused on his soccer game and has become very successful playing for the minor league Revolution team. Often siblings of children with cancer feel like their emotional needs are not important, compared to their sister and brother’s physical needs. They grow up quickly and try not draw attention to themselves. Luckily, Bryan found a healthy outlet in his athletic abilities.

After all this, Dylan’s mom has such a great perspective and advice to other cancer parents, “Be patient and positive. Advocate for your child’s needs. Try not to overthink about the future, just live one day at a time.”

The Bragdon Family

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

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

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

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

The 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 Santoro Family

As a parent, it’s hard not to worry. And while some parents hold more fears than others, usually cancer is not at the top of the list. But when that unfathomable diagnosis strikes a family, it’s as if you’ve been thrust into an alternate universe–one where your greatest fears come to life. At two years old, on December 9th of 2018, Jane Santoro was diagnosed with B-Cell Acute Lymphoblastic Leukemia, and the nightmare that is pediatric cancer began for her and her parents, Sandra and Mike. 

Jane’s 2.5 years of treatment were intense. Their team at Mass General Hospital for Children only told them about each phase of treatment right before it began because of all the unknowns. The second phase hit the hardest, with Jane winding up in the PICU on a ventilator. Her parents were told she was in respiratory failure and they thought they were saying goodbye. This was the hardest and scariest moment for their family, but incredibly, Jane pulled through. 

Jane had many difficult moments, from missing her baby brother Charlie, who was only 5 months old when she was diagnosed, to losing the ability to walk and lift food to her mouth. Steroids affected her spirit, which was heartbreaking to watch, with no way to help. Jane’s treatment was long but became less intense after the first 10 months or so. She had daily oral chemo but only monthly clinic visits and lumbar punctures and IV chemotherapy once every three months. Living all of this during Covid definitely added an extra layer of stress. 

Music therapy has been immensely helpful for Jane. Even when she was in a coma, a music therapist came to sing lullabies to her. Her mom knew she could hear during this time because her heart rate would change on the monitors. Jane’s current music therapist, Lorrie, is a constant source of comfort. Lorrie spreads joy wherever she goes. 

Jane’s kindergarten teacher recently told her parents how mature she is in the classroom–we also noticed this at our Rett’s Roost retreat! Jane spent several of her toddler years playing mostly with adults instead of kids, so she is comfortable with “grownups” and can be very eager to understand all the ins and outs of adult conversations. Still, she is just six years old and is still navigating the differences between her and her peers. She is proud of her scar and bravely tells her friends about cancer when they ask what happened to her.

Jane’s brother Charlie, at four years old, makes sure to be very brave at the dentist and doctor, just like his big sister. Their new baby Henry was born just four months ago. Sandra and MIke are grateful that they can be with Henry much more than they could with baby Charlie. It’s always so hard to lose time with the siblings. As Jane’s mom says, “Cancer is a thief!”

Now that Jane has been cancer free for a few years, the Santoros sometimes want to forget everything that happened to them. Jane and her brother were so young and it might be easier to leave the past behind. But Sandra and Mike believe that it’s important to not hide away the hard experiences in life. They want to show their children what they have been through and encourage them to remember how strong they are and hopefully foster empathy toward others facing life’s challenges. 

The Santoros keep moving forward with lots of love and support from each other, their community, other families that have faced similar experiences, and organizations like Rett’s Roost that offer them new friendships and experiences. On an individual family trip to Ogunquit in 2021, they experienced bright, sunny days at the beach and the kids’ first lobster boat ride. And at a retreat this summer, they made connections with other families affected by childhood cancer, frolicked in bubble storms and foam parties, spent time crafting, finding peace through nature, healing with reiki, telling their story, and most of all just feeling cared for.

Jane’s mom told us how now when she gets caught up in the daily hustle, she will catch herself reverting back to her pre-cancer worries–that normal family life is overly stressful. It’s in the quiet moments when she’s gazing at baby Henry or hugging her other two when she suddenly feels an overwhelming sense of appreciation and gratitude for their life in this moment. To a newly diagnosed family, Sandra wants to remind them to say “yes” to those that offer help. “Tell them what you need. Those who care about you want to help and don’t want cancer to take from you any more than it already has. In the moments when a gift or dinner is dropped off, you are also given an ear to listen and a connection to a community that is there for you.”

The Clinton Family

In the summer of 2017, the Clinton family received their youngest daughter Breslyn’s diagnosis of brain cancer. “For me it was like the end of the world.  I was so terrified and devastated.  Nothing seemed normal or real.  I literally fell on the floor.  It was like I opened a door and walked into a horror movie and the door closed behind me.  Nothing would ever be the same after that point,” Kendra said. 

The diagnosis started a long treatment plan consisting first of a craniotomy, months in the hospital following her surgery due to many complications, and 60 rounds of weekly chemotherapy. “Everything about treatments and surgeries was difficult. Seeing my daughter in pain and reaching out for me to help her, and not being able to do anything was the worst feeling in the world.”  

They were unable to remove Breslyn’s entire tumor due to the locations. “We are still followed closely with blood tests and regular MRI.  She also suffers from the mental and physical side effects from her condition and the treatments.  Mentally it has been tough. She has anxiety and panic attacks. She has become quite withdrawn and very attached to me. It is sad to see how much this is affecting her.”

However, the power of community has helped the Clintons heal through their journey. Facebook groups for parents of children with brain tumors became a safe haven for the Clintons to vent frustrations, ask questions, and share concerns. Of course, Rett’s Roost is a part of their community too. When asked about a favorite memory from a retreat, Kendra said, “My favorite memory from Rett’s Roost was watching the kids write and perform a song about their experience with cancer.  It was so profound and beautiful.  The way that kids simplistically describe a very complex situation was powerful.”

Kendra’s advice for families and friends when someone receives a cancer diagnosis? 

Step up. They may not know what they need so they may not be able to ask so just do something.  Whether it be a phone call, walking their dogs, taking the siblings out for the day, making a meal, a card….just something.  More than likely they feel alone and scared.  Show them that they are not alone.

For families who  have a child with a cancer dx: 

Try to focus on the positive.  Focus on making the best and finding joy and laughter throughout the day.  Also it’s ok to cry in front of your kids.  My daughter says she was very confused because I chose to shelter her from as much as I could but kids are smarter than we give them credit for.”  

The Iorio Family

In October 2015, the Iorio family, Melissa, John, and 4-year-old Luke, should have been planning their Halloween celebrations. Instead, some unusual bloodwork sent the family to Boston Children’s Hospital where they learned that Luke had Acute Lymphoblastic Leukemia, or ALL. “It was like a truck hit us from behind,” Melissa, Luke’s mom, said. Not only did they have Luke, but also a new baby– Matt.

For three years Luke battled ALL, with daily chemo and monthly lumbar punctures. His treatment involved steroids, which caused weight gain he has struggled to lose. Luke handled treatment well overall, with some setbacks and lingering side effects. “He has some challenges in reading, some self image issues from the weight gain, and various therapies to deal with the after-effects of treatment. They’re manageable,” Melissa says, a phrase that takes on new meaning as a cancer parent.

Now three years off treatment, Luke is 10 and in school. Luke enjoys playing with friends, building legos, music, and magic– something he’s quite accomplished at!

The Iorio family couldn’t have gotten through diagnosis and treatment without the help of supportive family and friends, and organizations like Rett’s Roost. After seeing a poster for the organization at the Jimmy Fund Clinic, Melissa submitted an application to our Shilo Farm retreat in 2017. There, she says, the family made lasting memories and lifelong friends, which they are incredibly grateful for. “Parent circles were the best part of the retreat. It feels so powerful, because it’s something we can talk about together and process. The experience always stays with you, whether just out of treatment or celebrating remission.” She continues, “The groups are so small and intimate, you really do form a fierce bond with these families over just a few days.”

Something the Iorios would like you to know about childhood cancer? “It affects the entire family, but made us– particularly the kids– more empathetic. Families become more aware and sensitive to the fact that everyone goes through hard things.” This month, Luke will have his last appointment after 5 years in remission. He (and the rest of the family) hope to be celebrating hearing the words “cancer-free” for Christmas.

The Hewitts

During the beginning of Kailyn’s cancer journey in 2013 things were different. Upon entering the hospital, you were always greeted with a smile and a hello. There was always something to do or someone to talk to while they waited for yet another appointment. There were all types of activities, games, movies, treats and performances by clowns, music, massages for the moms, just so many things to keep their minds off of the fact that their 5-year-old little girl had a very scary brain tumor called Anaplastic Ependymoma.

This past February, 7 years after her original diagnosis, a new tumor was discovered. Not only that but during a planning MRI for surgery, they found an additional tumor, this one is inoperable. Kailyn is now 4 weeks into treatment with another 35 rounds of radiation, hoping that radiation will destroy not only any residual cells but also this new growth. This time, because of the virus, when they enter the hospital they are immediately shuffled to a line on the floor 6 feet from the person in front of them. At the reception desk they are given new face masks and squirts of sanitizer, then head straight to treatment through almost empty, silent hallways. There is no one to talk to or compare stories now as they wait. No Child Life specialists to make them smile. No one to comfort them or put their arms around them or hand them a tissue. ALONE, ISOLATED, AFRAID, EXHAUSTED are only a few words Kailyn’s mom used to describe how this pandemic has made everything so much worse for cancer patients and their families.

Through everything Kailyn has grown to be an amazing young lady with her own unique quirks. Her mom Alison knows what her daughter is facing and told us, “I am broken everyday wondering to myself just how far this disease is going to go. How much of her life it is going to take away, and when and if it does, have I done enough to fight it?”

This is our last plea for #givingtuesdaynow. We need funds to help provide grants to Kailyn’s family and several others that are going through treatment during this time of isolation. It’s so simple to give $5 or $10 through Facebook. You can also donate on our website or through the Paypal Giving Fund.

Older posts