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The Hanson Family

Isabella Hanson–sweet little Izzy–was born on November 23rd, 2018. Her mom and dad, Laura and Josh, and her big sister, Nia, were simply in love. Life was good and simple at the start. Nia, a talented dancer, had several classes a week. As a toddler, Izzy would watch her big sister in awe. One day, in March of 2022, three-year-old Izzy tripped and fell at one of Nia’s rehearsals. She bellowed in pain, and refused to walk for over a week. The doctors thought maybe she had dislocated her knee, or strained her ACL, and they set her up with physical therapy.

Izzy did start walking again a week after the accident, but suddenly one night, she woke up screaming in pain. Her parents were concerned and decided to take her to an orthopedist. Since nothing showed up in the x-ray, they gave her a boot and asked to see her again in a week. The condition persisted and she would consistently lose function in her leg, fall, limp, and refuse to climb stairs. Her parents knew something was wrong, but no one seemed to know what it could be.

That’s when the low-grade fevers started. Izzy looked and acted unwell–she was pale and more lethargic than other three year olds. Every once in a while she’d wake up in the middle of the night in pain. More doctors appointments turned up nothing. Their primary care doctor took more x-rays and sent them to Boston Children’s Hospital (BCH). They attempted to get an appointment with a children’s arthritis specialist, but they were booked out for 6 months. Instead, an orthopedic appointment opened up at BCH and they took it. This doctor agreed that her condition was unusual, and concerning. He suggested it might be related to her kneecaps and ordered an MRI, but it was only a guess, and it would prove to be wrong, very wrong.

Through this time, Izzy was having blood drawn, but the results were always normal. Then her shoulder started hurting. Her fevers continued to spike. After another difficult weekend with no answers, they brought Izzy back to BCH. The doctor there admitted, “She’s sick. And I’m sorry it’s taken 8 weeks to believe you. She may have a malignancy.” Once again her bloodwork came back normal, but they scheduled an MRI for that Friday.

At this point, Izzy’s parents felt defeated. Laura was thinking, this MRI will be pointless. Was it worth putting her through it? She needed a sign to know that they were going to figure out what was wrong with her precious child. The summer before, Josh’s brother got married. His wife’s father had recently passed away from cancer. One day, this man, who Laura did not know especially well, appeared to her in a vision. He told her to get the MRI done. While this seemed unusual, Laura listened.

And thank goodness they did. The MRI showed that Izzy had lesions in her leg, which they thought might be Osteomyelitis, a serious bacterial infection of the bone. They were sent to the ER where a doctor said, “You guys are fighting so hard to get her help. I promise to help you figure this out.” When the Leukemia sensitivity blood test came back negative again, the oncologist Laura spoke with told her, “I’m 90% sure this is not cancer. You can take her home and we’ll continue to monitor over the next couple weeks.” Laura and Josh were frustrated beyond belief! “She’s not ok, we can’t wait a couple weeks. No one will take care of her. We can’t control her pain anymore.”

That’s when the ED doctor stepped in. He pulled strings to get oncology to admit Izzy, despite the oncologist’s recommendation. They were admitted on a Monday and they ran a bone marrow test on Tuesday. Late afternoon a team of doctors came in, sat them down, and told them it was leukemia. By this point Izzy was so sick even though her lab work looked fine. But because of an insurance error, they wouldn’t start treatment right away. NH Medicaid was denying the claim to treat Izzy in Boston. The doctors, worried about the potential medical bills, suggested they fly Izzy to Dartmouth. But Dartmouth does not offer the aggressive treatment protocol that Izzy needed.

Josh and Laura were completely infuriated, “She will die! No, we are starting treatment here today.”

The first phase of Izzy’s leukemia treatment was comprised of 32 inpatient treatments with heavy doses of chemotherapy, constant lumbar punctures, and steroids, with the goal to try to get her in remission (ie., no leukemia cells in her bone marrow), which she did after about one month. By August, she had started to walk on her own again. Still, the family had to spend a total of 4-6 months in the hospital over the course of a year. And they received difficult news that Izzy has a genetic deletion, which puts her in a high risk category and required even more chemotherapy.

Izzy got very sick during these treatments and spent a week in the ICU with a dangerous blood infection in her pic line. She got another infection from a splinter in her foot that caused cellulitis to travel up her leg and affected her ability to walk again. When she was so sick, she lost all of her silly personality, and slept for much of the day. The only thing that would cheer her up was Facetiming and visits with her big sister Nia, and watching the movie, Luca.

In the spring of 2023, Josh and Laura gave birth to another little girl, Ayla. They were able to schedule an induction because of a condition with Laura’s liver. But they kept pushing it off so that it could happen while Izzy was home from the hospital, and when Laura’s mom could watch her and Nia. They even rushed to take some pregnancy photos and hit up Target before heading to the local birthing center to be induced. The new baby was a positive shift for Izzy because Ayla was always in the hospital with them, and Izzy loved her new little sister very much.

Big sister Nia had to bear the brunt of her sister’s treatment by being strong without her mom around like she always had been. Nia was only 10 years old when Izzy was diagnosed. And she didn’t fully understand what was happening or why she was asked to stay with her grandmother and continue going to school while her sister was sick in the hospital. But Nia stayed positive and kept reassuring Laura and Josh that Izzy would be ok. She even bought her mom a little sign that reminded her to “Pray, Trust, and Wait.”

Izzy finished frontline treatment in June of 2023, at which point she started the second phase of treatment called Maintenance, which still requires weekly visits to the Jimmy Fund Clinic, but fewer overnight stays. She will be finishing up this second phase of treatment in April of 2024.

Thankfully, Izzy remains in remission and her family hopes that this nightmare is nearly over. It was so hard to reach Izzy’s diagnosis. Laura wants to remind parents that kids present cancer signs differently. If you have an intuition that something is wrong with your child, despite what the bloodwork and doctors say, you need to advocate for them and fight for more testing.

Izzy is a little warrior with a will to thrive. She loves her family and two dogs, Maverick and Harley, more than anything in the world. In the hospital she enjoyed coloring with her dad, taking wagon rides to Starbucks, and visiting the big fish tank at Boston Children’s. She loves to play with slime and pretend to be a vet. This winter they got to go to Florida for a week. All three girls were running and playing and were just so happy. Josh and Laura started crying because there was a moment during Izzy’s treatment when they didn’t think they’d ever see that again… “We felt overwhelmed with gratitude for the gift of that moment.”

The Hansons were also grateful for the family, friends, doctors, nurses, and organizations that have supported them during this time. Friends organized a motorcycle fundraiser called Dougy’s Ride to raise funds for their family. Make a Wish NH has also been there for them and are waiting for Izzy to choose her wish. Cops for Kids with Cancer supported the family through the Somersworth Police Department.

The family also attended a Rett’s Roost retreat in July of 2023. Unfortunately, Izzy wasn’t feeling great that week because it took place immediately after one of her chemotherapy infusions. But the retreat was transformational for Nia. She was able to connect with other siblings that had been through a similar experience. Laura told us it meant so much to her and her daughters, “Rett’s Roost is a full circle of support. We were able to meet people and connect–that is everything.”

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.”

Princess & Madison

In May of 2019, 12-year-old Madison (Maddie) started experiencing unrelenting stomach pain that lasted for months. In October, she was incorrectly diagnosed with Mononucleosis. When her health continued to suffer, the doctors finally ordered a scan and discovered tumors on her liver. By this time, Maddie was already at stage 4 and it took nearly two months to determine the type of cancer she had, which was not a “good one.” Acinar cell carcinomas are highly aggressive neoplasms, with a median survival for patients with metastatic disease of 14 months, and an overall 5-year survival rate of less than 10 percent. The other painful news was that ACC is extremely rare in children, with only 25 known cases in the literature.

In March of 2020, right before the start of the pandemic, she underwent surgery to remove her tumors. and started aggressive chemotherapy to keep the tumors from growing back. For the next 8 months she stayed cancer free, but in that time, she developed Type 1 diabetes and a conversion disorder that caused tremors and seizures nearly every waking moment.

In August 2020, Maddie rang the bell, but it didn’t mean that she would be able to go home. She had lost the ability to walk and still needed a lot of medical care. She did recover from the seizures and was able to learn to walk again (you would never know her struggles seeing her today).

By November though, she had relapsed, and was given just 6 months to live. They enrolled Maddie in a clinical trial since the treatment options were nonexistent for a child with this type of cancer. She also received radiation to fight back the tumors. Yet they continued to grow, and in April of 2021 Maddie’s mom Princess was told there was nothing more they could do and that her daughter may not survive another week.

Princess fought back. She could not accept this fate for her daughter. She transferred Maddie to a different hospital and continued with an off-label protocol and chemotherapy. By May, Maddie miraculously had no evidence of disease! In December of 2021, she finished chemotherapy and rang the bell again! It is now 1.5 years later and she continues to have clear scans.

Maddie truly is a phenomenon, and we recognized that as soon as we met her in 2021. It was the pandemic, and at that time we were giving out family grants and offering individual family trips to Maine. After hearing Maddie’s story, we offered them both. And had the joy of meeting this incredible mom and daughter duo. We continued to stay in touch, and this year, we invited them back to a full retreat. Even though they live in Ohio, Princess will go to the ends of the earth for her daughter, and so they hopped in the car to come back to Maine.

You never know if teens will enjoy our retreats. Most take a while to warm up to the idea of connecting with new friends of all ages that have experienced cancer as a patient or sibling. Not Maddie though (who is now 16)! This girl’s smile beamed as soon as she arrived. She was the oldest of the group, yet, she got right in there with the younger kids to throw water balloons, paddle a kayak, ride a horse, hold a snake, or show off her incredible acrobatic skills. Maddie is a marvel–it’s unquestionable.

This is what Maddie had to say after our retreat, “Going into the retreat I was somewhat nervous because I had never been on this type of away trip/ retreat before, and so I was nervous to see what was to come. Safe to say, I had one of the best times of my life. By the end of the retreat, I had made some amazing memories and friendships, that will probably last me a lifetime, including my first-ever trip kayaking on one retreat, SUP boarding, my first time going to the circus, and holding a snake around my neck. The majority of these things I wouldn’t do “willingly” but given the circumstances and being able to connect with other kids like me, I decided to get out of my comfort zone and I definitely did NOT regret it. During the end of a retreat, at the end of July, I had a heartfelt moment with all of the families, and the amount of comfort and love that I had been gifted was definitely a moment to remember. So long story short, going to a Rett’s Roost retreat was honestly one of the greatest moments I’ve ever experienced in my cancer journey.”

Maddie’s mom Princess had an equally positive experience, “At the end of the retreat, you’re asked to say something you are thankful for. I was thankful for being able to find a glimpse of my true self again. To know, even though my kid has pancreatic cancer there are other moms out there that will forever have my back and understand my struggle. Yes, everyday we beat the odds, but that takes a toll on you. Of course I cried like a baby when I spoke. Madison ran up to me and hugged me. She said, “I’m here for you mom. I’ve never seen you cry like that.” I said, “you aren’t suppose to.” She said, “but then I would know you are human.

“Crying didn’t help me, but I think it helped her see something new in me. But gaining a new support system definitely helped me… Having a child diagnosed with cancer changes you, you lose who you are. Regardless of what anyone says, part of you dies in that moment. But somehow if you meet the right person or people; they can help bring some life back into you. Put a little sparkle back in your eye. Something about a mother’s tears gives you strength. Something about a mother actually understanding and not just giving you the “oh I’ll pray for you” phrase but actually listening and giving a hug that only a mother that’s been in my shoes could give, fixed me, just enough to be able to keep going.”

Erica & Josie

In 2016, Josie Divoll’s mom, Erica, suddenly noticed that her little girl wasn’t energetically toddling around exploring the world like most 2.5-year-olds. She was sleeping much more than normal, had dark circles under her eyes, and was wanting to be carried all the time. As a nutritionist, Erica thought Josie might have low iron, so she took her to the pediatrician. The doctor listened to her concerns and ordered bloodwork to be taken. That night, a Friday, he called and said the numbers were way off, but to come back on Monday to have blood redrawn—unless she spiked a fever, which she did on Saturday night.

Erica and Josie’s dad, Ian, took her to the ER as recommended. After a long wait in their local hospital in Vermont, they were told that an ambulance would be taking her to Boston Children’s Hospital, nearly 3 hours away. Never at any time did their mind think the word cancer. They thought that maybe Josie had a virus and would be sent home the next day. The next day came, however, with a diagnosis of high risk B Cell Acute Lymphoblastic Leukemia. Rather than going home, Josie was admitted that night and was not released for another 106 days.

Josie began the routine treatment for high risk ALL, and the cancer was gone within a few weeks! That didn’t mean treatment was over, however, the treatment plan would span at least 2 years. During this time, Josie developed several secondary issues from being in the hospital and on chemotherapy, which destroys the immune system. She got typhlitis, which is an inflammation of the colon, and was put on TPN (nutrition provided directly into the bloodstream). Soon followed painful kidney stones. She was beginning to lose a lot of strength, and started to have high fevers that would not subside, which was believed to be caused by a fungus. After over a week of no success in finding where the fungus was living in her body, they found it in her eyes. To this day she has scar tissue within both eyes, one being infected enough to impair her vision slightly.

Once released, she was tube fed as she still had issues with her colon, and due to a side effect from one of the cancer drugs, she lost strength in her body and had to learn to sit up, crawl, and walk again. This took several months of weekly physical therapy. The monthly steroid treatments she received in the last year and a half of treatment were extremely difficult to manage, as it turned their sweet Josie into an agitated, irrational child.

Yet Josie persevered through her treatment with strength and ease. She liked to be pushed on her bike, and loved to play and cuddle with our cat, Tinkerbell. Though her weakened legs from treatment caused her to fall more than she would otherwise, she still liked to run as fast as she could everywhere, and race with her friends. She was able to start pre-K, and blossomed from being with other kids; and fortunately the school was flexible with her needs when she was feeling off from her medications. She loved to draw, and going to the doctors for appointments was usually exciting, as she knew she often received a little toy form the “medicine store,” aka the pharmacy; as well as gifts at the clinic.

Josie competed her last round of chemotherapy almost exactly 2 years after she was released from that 106-day stay in the hospital. ALL is a cancer that has a good prognosis, but does have one of the longest post-cancer treatments and also a potential lifetime of side effects. Her muscle weaknesses still require physical therapy and her vision, although stable now, will likely degrade at a young age. Josie has one more year before she is 5 years off treatment and staying cancer free, which would mean she is considered cured!

Once Josie was done with treatment, the emotional toll childhood cancer takes on a family surfaced. Erica found herself being more upset and angry and short tempered than usual. “I was surprised that I was feeling this way, as everything should have been fine–she was cancer free and done with chemotherapy. It took me a while to realize I was still recovering from the trauma of what we went through.” Certainly not a day goes by that Erica doesn’t think about Josie’s experience or the experiences of other children that are currently in treatment or have died from their disease.

Erica has this advice for the caregivers of children with cancer, “Try not to think of the worst case scenario with everything that happens. I was only able to “hold it together” because I tried to see the positive in the situation, no matter what it was. That doesn’t mean you are not allowed to be angry-be angry! Allow yourself to feel all the feels, recognize them, and try to find healthy outlets for the frustration. Find other families in the cancer community and tell each other your stories. There is strength is hearing what others have been through. Time truly heals, and having a child with cancer is so deeply traumatic, so allow yourself that time to heal.”

Erica told us that her experience at a Rett’s Roost retreat in 2019 was so much more impactful than she expected. She felt the power of being with others who went through a similar traumatic experience, which has been really important in her healing process. Since then, Erica attended two other retreats as a volunteer and support staff. We are so grateful when families that participate in our programs then give back in this way to our organization. It’s the beauty of the Rett’s Roost community.

Maximus Strength

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.

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 McCary Family

James was diagnosed with Non-Hodgkin’s Lymphoma – T-Cell Lymphoblastic Lymphoma on July 20, 2020, just a few days before his fifth birthday. The McCary family, Kate (mom), Mike (dad), brother Nathaniel and sister Anna, were all devastated by the news, which came as a huge shock. 

Kate recalls, “I was putting James to bed one night, and I noticed a strange lump on the side of his neck. At first we thought it was an inflamed lymph node. I remember we looked up “inflamed lymph node” on the Internet that night and we read it was likely harmless and rare for it to be something more serious like cancer. We felt relieved that night after reading the likely cause and figured the chance would be too slim for it to be anything else. Turns out we were one of the rare, unlucky ones. A biopsy ultimately confirmed James had T-cell lymphoblastic lymphoma and our life as we knew it collapsed around us. Everything was a blur those first few weeks and months. We spent many days at the Jimmy Fund so that James could undergo further testing, endless blood draws, surgery to have a port put into place and he began chemotherapy immediately.” 

Though James’ cancer was considered high risk, there was also a good prognosis for being cured. After James’ initial treatment and recovery, he spent 13 months in remission. Unfortunately in the summer of 2021, routine testing showed a possible recurrence of the cancer. After months of testing, in October of 2021, for the second time, the McCary family received the heart breaking news that James’ cancer had in fact returned. This meant James would need to undergo additional chemotherapy, radiation and a bone marrow transplant, which would require finding him a donor match. 

Amazingly, James’ brother, Nathaniel, was a match and was able to provide James with the life saving bone marrow he needed to fight off his cancer once again. This was a difficult procedure for Nathaniel and also meant the McCary family would have two children in the hospital at the same time. Fortunately, the procedure went well and Nathaniel made a quick recovery. 

After his bone marrow transplant, James’ recovery was really hard. He was extremely sick, weak and susceptible to infection because the transplant had entirely wiped out his immune system. James had some complications in the hospital, but was fortunate enough to recover from them after receiving excellent care at Boston Children’s. After more than a month stay at the hospital he was sent home only to return a week later for GVHD (Graft-versus-host-disease). Finally, after an additional week in the hospital, James started feeling better. 

The McCary’s had to be really careful about isolating him at home, keeping the house clean and free from dust, cooking his food a certain way to avoid contamination, and James had to be tutored from home because his immune system was not strong enough for him to go back to school. This September, James was allowed to stop all precautions and return to school in-person. He has been extremely happy and healthy this fall, much to his parents’ relief.

The McCary family is very grateful for the support from the community and friends, they could not have gotten through these difficult years without it. Kate says that, “People are extremely generous and willing to help which is so important because no family should have to go through this alone. Don’t blame yourself. I found it hard not to do this, but cancer is nobody’s fault. Recognize this is a marathon and not a sprint, and try not to focus on what could happen, focus on the now.”

The McCary family participated in two survivor retreats this summer through Rett’s Roost, as well as the Behold the Cold Polar Plunge last March and the Superhero 5K in October. According to Kate, “We have thoroughly enjoyed attending the retreats and meeting other families who have gone through a childhood cancer diagnosis. There are not too many people who can understand something like that, and it was so helpful to find other people who had a similar experience. Rett’s Roost also knows exactly how to have fun. We have loved all the activities for both parents and kids that support healing. I also feel comforted to know that Rett’s Roost is around to support us, should we have to face more challenges ahead.” 

Bone marrow donors are significantly lacking in the United States and we frequently rely on donations from other countries. If you would like to learn more about bone marrow donation, go to www.bethematch.org.

The Goodman Family

Addie Goodman can light up a room with her smile. Her shy, quiet demeanor melts away once she gets to know you, and she lets you into her funny, creative, beautiful spirit. Her compassion and empathy for others is fierce. She and her older brother Emmett are thick as thieves and have a sibling relationship parents dream of. Here is her story. 

In 2014, the Goodman family began noticing some odd symptoms in their youngest daughter, Addie. Addie became symptomatic overnight with excessive thirst and urination. She began to lose weight and was getting up multiple times a night to use the bathroom and drink tons of water. After demanding a consult with an endocrinologist at Boston Children’s Hospital, Addie was diagnosed with Central Diabetes Insipidus, a rare condition where the pituitary gland no longer produces the hormone to tell the kidneys to retain fluids, and later, Secondary Adrenal Insufficiency. But it wasn’t until 2017, after many consults and a visit to Cincinnati Children’s Hospital that her parents would finally get some more clarity on Addie’s health issues. The primary diagnosis, Central Nervous System Langerhans Cell Histiocytosis, came as a bittersweet victory. Addie’s mom, Angie, recalls, “I had to fight for the diagnosis from a top specialist from Cincinnati Children’s. I was watching my daughter get worse so I felt some relief once treatment started.”

Treatment for Addie is ongoing, as her condition is very rare–potentially lifelong until more research is done. She is on many daily medications, including oral chemotherapy, and will deal with a lifetime of hormone loss. There is a possibility of neurodegeneration associated with her cancer, due to central nervous system involvement. She continues to experience daily symptoms, which is hard on the whole family. Emmett recently confided in his teacher that he worries about Addie daily. Angie suffers from insomnia and post-traumatic stress disorder. “PTSD is real, and you can only be strong for so long,” Angie says. “My health started to falter, I developed high blood pressure… it’s been devastating for all of us.”

The Goodman family attended our survivor retreat at Shilo Farm in Eliot, ME. “Shilo farm was a magical weekend. We enjoyed the intimacy of being with other families who understand.” 

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.”  

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