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.
