When Onyx was just 5 months old, his mom, Morgan, noticed something wasn’t quite right–he was not keeping any breast milk down and seemingly staring off into space. Because it was during a peak time of COVID infections, February 2021, the Redmans were told it wasn’t worth the risk of bringing Onyx to the doctor and to continue to monitor him from home. But after reporting to them that his head seemed larger, the doctors finally agreed to see Onyx in person.
At the pediatrician’s office, a measurement was taken of Onyx’s head and it was confirmed there was swelling. A CT scan showed hydrocephalus and a 6cm tumor on his brain stem. Kris, Onyx’s dad, and Morgan rushed him to Boston Children’s (since waiting for the ambulance would have taken several more painstaking hours) and he was prepped for surgery to remove the tumor the next day. The diagnosis was dire–an Atypical Rhabdoid Tumor (AT/RT) is a rare, fast-growing brain and spinal cord cancer primarily found in young children.
His primary treatment plan consisted of 3 rounds of high dose chemotherapy with a stem cell transplant. The Redmans then started using a high dose cannabis protocol and Onyx was considered in remission for almost a year. During this time, the Redmans were able to participate in a family retreat with Rett’s Roost at Rolling Ridge with 6 other families. Although it was a wonderful experience, there were concerning signs of Onyx feeling unsettled.
Soon after the retreat, in July of 2022, a new 2cm tumor was discovered and he underwent another tumor resection, with a plan to start radiation after he recovered. However, while waiting for the radiation machine to be available, Onyx’s tumor came back for a third time. That tumor was again removed and radiation treatment started 3 days later.
Onyx made it halfway through his radiation treatments but began to have right-side weakness. In September, he got to attend another smaller retreat in Ogunquit. During this one, he celebrated his 2nd birthday, and his entire Maine family showed up at the retreat. It was a beautiful day that included a foam party. But his parents knew that something wasn’t right.
The next day, an MRI showed that the tumor had grown rapidly to 10cm, covering almost the entire left side of his brain. All treatments were stopped and the family got to take one last trip to Alice’s house on Cape Cod to honor his life. Onyx was then brought home on hospice care where he lived three more weeks.
Moments before Onyx took his last breath they had him very comfortable in their bed trying to help him with his breathing. Onyx’s big brother, Jade, all of a sudden bounded through the door and started jumping around the bed saying ” Let’s play! Let’s play!” Kris and Morgan were both trying to rush Jade out to keep Onyx as calm as possible and when they went back to check on Onyx he wasn’t breathing. After what seemed like a lifetime he took a great big gasp for air. That was Onyx’s last breath. It was October 10th, 2022.
One thing that really helped Onyx through treatment is music. He loved being serenaded and his mom says they had music playing at their house 24/7. One of the music therapists made Onyx a CD with his favorite songs, which helped him stay relaxed during procedures.
Onyx’s parents, Kris and Morgan, and their four year old son Jade have struggled in now being just a family of three. “It’s just devastating, we were so happy to have two boys close enough in age that they would be best friends for life,” Kris said. While Kris and Morgan were trying so hard to save their dying son, their other son, who was in an important developmental stage in life, was suffering too. Trying to keep them in contact and still care for Jade’s needs felt impossible at times. It was tough, in all aspects of life–emotionally, mentally, physically, and financially. However, their family unit has become stronger as they now know that they can overcome anything together. And they recently made a big move to Arizona to start fresh and get a little more sunshine.
Their advice to parents facing the end-of-life of their child is this, “We set up a meeting with all of Onyx’s different care teams and put all the options out on the table so we could give Onyx the best care for his final days. A meal train was set up so we didn’t have to think about meals and hospice care helped with pain management and comfort medications. We had Onyx’s heart beat recorded by the EMT which we keep dearly for it is a memory of him still being here.” They also told us that they’ve found some relief in their grief by looking for signs from Onyx, exploring beautiful natural places, and continuing to share memories with each other and their community.
Kris and Morgan also shared their gratitude with us, “Rett’s Roost has gone above and beyond to make us feel that we are not alone in this crazy world of cancer and child loss. There are times when I think back and some of the happiest memories I have of Onyx are at the retreats that we attended. We’ve met some of the greatest families, who like us, have been through one of the worst tragedies a family can go through in life. They [Rett’s Roost] take the burden of losing a loved one, or someone who is still fighting, and make things a little easier.”
At fifteen months old, in March of 2017, Max Littlefield, a happy healthy toddler, developed a low grade fever that persisted for several days with no relief. At first he was still eating and drinking just fine, but as the days went on, he was consuming less… and less. His pediatrician assured the first time parents, Sarah and Ryan, that Max was just fine. Despite the doctor’s confidence and suggestion to alternate Tylenol and Ibuprofen, Sarah had that mother’s intuition that something just wasn’t right with her son.
A few days later they returned to the doctor’s office. The medicine hadn’t helped, he was eating less and less, was exhausted, and was generally not himself. Fortunately, a different pediatrician took the time to sit and listen to their concerns. She was honest with Sarah—she didn’t know what was going on, but recommended they head to Maine Medical Center’s Emergency Room just where they could run some tests.
At Maine Med, they were quickly offered a room in the pediatric area. Max sat on Sarah’s lap, exhausted and cranky and not wanting anyone touching him. A very calm, kind and gentle male nurse knelt in front of him and spoke to him in the kindest way until Max trusted him. He looked Max all over got some standard data and poked at his belly a bit. A short time later they were told that Max would have an ultrasound of his abdomen to rule out blockages of any kind. Sarah remembers seeing the CT technician’s face knowing something was there… just no idea what.
After waiting for what felt like an eternity, an entire team from the ER as well as a team from the Barbara Bush Children’s Hospital–attending doctors, medical students and nurses–paraded into the already crowded space. Sarah remembers, “They all stood there and looked at us with sorry eyes and cold bodies. I remember thinking… ‘just *&#$ tell me already.’ I don’t remember the language they used, but I remember screaming… wailing and sobbing uncontrollably. We were taken upstairs to the Children’s floor and told an oncologist would be meeting us at some point over night.”
The next day Max had an MRI and surgery to make sure the tumor wasn’t metastatic. He also received the official diagnosis of embryonal rhabdomyosarcoma. His port placement surgery was set and discussion and decisions related to treatment were happening. Max went through half of his chemo regimen, had an eight hour surgery to remove the mostly necrotic (ie., dead) tumor, followed by more chemo and proton radiation at Mass General in Boston. In Maine they had their community. They knew the nurses and doctors… child-life, the volunteers, the cleaning staff… they knew everyone and everyone knew them. In Boston they felt like just another number. It was incredibly painful and isolating.
One of the hardest moments came in May of 2018, when they received the phone call that Max had relapsed. He had finished a year of treatment and had just completed his first CT scans (three months later). The oncologist called, somber and apologetic… “I’m sorry Sarah, it’s back, there’s three new tumors and we suspect there’s more.”
The oncologist in Maine suggested they go to Boston Children’s Hospital to get a second opinion. They went, reluctantly, since their first experience in Boston had jaded them. The young pediatric oncologist told them to, “bring him home, make all the memories we could, take as many pictures as would fit on our phones… the likelihood of him surviving the cancer was less than 10%…. as he’d most likely not survive the grueling relapse chemo regiment.” Once again, they felt like a statistic at what was supposed to be one of the best pediatric cancer hospitals in the world.
When Max finished the front line treatment of the relapse protocol in 2019, he started maintenance therapy. Due to his risk of relapse and because of how well he handled the maintenance regimen the team decided to keep him on it for as long as possible. In March 2023, it was finally time to take Max off of the maintenance drugs, since going any longer would cause serious damage to his internal organs. Sarah told us how scary it is to be off of treatment now, knowing Max’s high risk of relapse. But seeing him go to school, interact with his peers, and do all the stuff healthy seven-and-a-half year olds do, is worth the terrifying anxiety.
Max played outside through all of his treatment. It was important to Sarah and Ryan that he have as normal a childhood as possible despite his cancer. He played in the mud, he sledded, he became proficient on his balance bike, he played with his cousins, he camped and swam, he ate ice cream and tacos, burgers, and funny enough, an awful lot of kale salad. He spent an exorbitant amount of time riding in a Kinder-Pack on Sarah’s back or front.
Max is creative and artistic—he loves making things out of recycled goods. He loves to move water and come up with creative ways to do so. He loves to be outside, climbing, hiking, running, swimming, rope swinging and jumping on the trampoline. He adores his friends and family. Max’s cancer has allowed Sarah to see more clearly the daily joys of raising and interacting with him, all of the little moments. Her advice for a newly diagnosed family would be to build a cancer community. There is no other way to ease the emotional burden of caring for a child with cancer than meeting other parents who GET IT, who truly understand your fear, anxiety, worry and how complicated and precious life is. This summer Sarah and Max finally got to attend a Rett’s Roost retreat, and they treasure the memories they made with other families like theirs.
Before cancer, Zachary Gagnon was a healthy, vibrant, precocious little boy. In the spring of 2013, he began experiencing recurring stomach pain while at school. He was in the 3rd grade and was struggling to fit in and find a sense of belonging. So his stomach issues were assumed to be a result of stress and anxiety and his pediatrician prescribed him Miralax. But by August, Zachary began noticing a persistent tingling in his right arm.
At a local urgent care, an x-ray showed an unusual space in his upper arm, which was dismissed as a likely “growth spurt.” Fortunately his mother, Peggy, persisted after finding a large lump under his armpit two weeks later, and Zachary was eventually referred to Mass General for additional testing. Peggy recalls the doctor in Boston making a comment, “It is a good thing that you were very astute.”
Mom and son spent a grueling, anxiety-filled week in Boston undergoing testing, and on August 15, 2013, Zachary was diagnosed with Ewing’s Sarcoma at the age of 10. Peggy remembers sitting in the examination room feeling like they were in the twilight zone and a tremendous heaviness, as if the world was coming down on them. Peggy says that Zachary asked the doctors, “am I going to die?” It was incredibly disorienting and devastating.
Zachary underwent 11 months of a strenuous treatment protocol for Ewing’s sarcoma which consisted of chemotherapy, biopsies, 6 weeks of proton radiation in Boston, and surgery of his right scapula to remove what the doctors felt was left of the tumor. Peggy felt helpless as Zachary became extremely frail and sick during chemotherapy to the point where he could hardly walk. He vomited violently and it was grueling to watch.
Following treatment, Zachary was in remission for about 11 months, then a growth on his lung was determined to be a recurrence of Ewing’s Sarcoma. Zachary underwent multiple clinical trials for another year, however none of them were beneficial. Peggy was given the heartbreaking news that nothing more could be done for him. Because of the location of the recurrence, Zachary had a very hard time breathing and was on 24-hour oxygen. The tumor quickly spread to his esophagus and heart. Despite being on oxygen and a morphine drip, Zachary never lost his will to live and told his mom, “I don’t want to die. I am gonna live, do you hear me? I am gonna live!” He said this with such conviction and certainty, Peggy believed him. He also said to her in his final days, “you were a good mom, I love you with all my heart.” A little over three years since his diagnosis, Zachary passed away in the comfort of his home, with his mom by his side, on October 22, 2016 at the age of 13 years and 11 months.
Peggy tells us, “Zachary is an old soul.” He was always mature beyond his years and would often question why his peers were so mean and immature. He loved people, was empathetic to others, and was interested in educating himself about the world. Interestingly, prior to ever being diagnosed with Ewing’s sarcoma, Zachary would cry when he would see commercials on television of St Judes children with cancer. During his treatments, he loved making paracord bracelets and this helped him remain focused and productive. He loved listening to inspirational Christian music on his iPad when he was going through treatments. While in the hospital, he would sing out loud when listening to a Christian song and he would cause the nursing staff to cry as they could not believe how resilient and open-hearted Zachary was. He developed a love for watching social experiment videos on youtube of displaced veterans. During our travels, we encountered people experiencing homelessness which inspired Zachary to want to help. He would often say to me, “what can we do to help them mom?” He also would video tape himself giving inspirational speeches about life, homelessness, and people who are struggling in the world.
Peggy has had a very difficult time the last six years since Zachary died, especially this past Christmas. She lives alone in a remote area and does not have any other children. She still has Zachary’s dog, Ginger, a golden doodle, who keeps her company. Peggy reports that a lot of people in her life have disappeared since Zachary’s passing, which adds to her loneliness. She is currently becoming involved with the Make a Wish foundation to become involved in a positive organization and create meaning of her grief by giving back to others. Peggy previously attended an online grief support group through Rett’s Roost, and felt it was very helpful and beneficial to talk with parents who have undergone the same journey.
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.
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.
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.
