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Our Families

The Iselin Family

A diagnosis of Acute Lymphoblastic Leukemia (ALL) isn’t typically a life sentence for a child. In fact, the 5-year survival rate for U.S. ALL patients younger than age 15 increased from 80.2% to 87.5% between 1990 and 2000. It’s referred to as “the good cancer” in children. And while that does offer some relief to parents receiving the terrifying news, the treatment is long, grueling, and incredibly difficult. And that incurable 12.5% looms large.

This is Henry’s story. He should have been in that 87.5%. He successfully made it through the 3.5 years of treatment. And his family celebrated–albeit cautiously. Because as Henry’s mom so rightly reminds us, “It was always in the back of our minds that this was cancer. That horrible things happen to people with cancer. That this is not an easy journey, and it doesn’t always have a happy ending–even if we were told there was no reason Henry would not be a survivor.”

It was April of 2017 when Henry’s symptoms came on very quickly—of utmost concern was his sudden distended belly. He was looking pale and threw up once or twice. His parents, Toby and Brenna, brought him into the local pediatrician on a Saturday morning. Her exam revealed a swollen spleen, which warranted an ultrasound and bloodwork. The labs didn’t look good, and the ultrasound revealed an enlarged liver and spleen. The doctor sent them to the nearest specialty hospital—Dartmouth Health. There they did more tests and imaging and gave Henry an IV. At 10pm that night, while Henry was asleep in his hospital crib, the team of doctors came in and told them that Henry most likely had leukemia. They would need to wait two more days to have the official diagnosis through the bone marrow biopsy, but the medical team was fairly certain he had cancer.

 “To say we were in shock, devastated, and in denial is a complete understatement. I remember sobbing in a fetal position on the hospital room floor. We talked to each other, promising that we were going to tackle this like anything else. We promised to stay strong for Henry, our other kids Elodie and George, and each other.”

-Brenna, Henry’s mom

All things considered, Henry’s cancer journey was pretty “normal.” It was 3.5 years long, beginning with 10 months of intense treatment. While in the hospital, they ordered hand sanitizer dispensers, Clorox wipes, and had their house professionally cleaned for when Henry returned with a compromised immune system. Henry lost his hair twice during those first 10 months. He wasn’t allowed to go to school with his twin sister, or visit his grandparents’ farm where he had gone once a week since birth until he was diagnosed. They had to keep him free from as many outside germs as possible. They couldn’t wait until the “maintenance” phase of treatment, where they were told his immune system would strengthen and things could get back to “normal.”

Unfortunately, Henry’s transition into maintenance treatment was not easy. He contracted a rare virus called Coronavirus (this was back in 2018), which caused pneumonia. He was in the hospital off and on for 3 weeks while they figured out what was going on. He needed to have a bronchoscopy, which was the first time he was put on a ventilator. He ended up needing oxygen while he slept at home for over a month. That helped rest his lungs enough to strengthen him. As he recovered from the virus, he got stronger, he didn’t need oxygen anymore, and he was able to eventually join his siblings at school.

Once Henry was safely transitioned into the maintenance phase of treatment, things went really well. The Iselins created many favorite memories of life with Henry during this time. He was on maintenance for about 2.5 years, going for monthly chemo appointments, taking chemo nightly at home, and having “doctor naps” (ie., spinal taps) once every 3 months. Looking at him, no one could tell he was sick. He developed right alongside his twin sister and other peers. He was vibrant and happy, and took his pills every night like a champ. Everything was going amazingly, and the end of treatment was getting close.

Henry’s last official chemo pill day was August 24, 2020. The family was excited (yet nervous) to finally reach the end of treatment! As they got closer to the date, however, Henry came down with chicken pox. He was vaccinated with the first dose at 12 months old, but after he was diagnosed with leukemia, he wasn’t able to get the second vaccine. They didn’t know it was chicken pox at the time– it presented more like hand-foot-and-mouth disease. He visited his pediatrician a few times, but once he wasn’t able to eat or drink due to the discomfort in his mouth, he was sent up to Dartmouth.

Henry was admitted back to the hospital the day after he finished his 3.5 year cancer treatment. Once there, he was quickly diagnosed with chicken pox and put on an anti-viral medication. He didn’t get it in time, though, because soon the chicken pox spread to his lungs. He was intubated and even with the ventilator on its highest setting, it wasn’t enough to support his lungs. Henry was flown to Boston Children’s Hospital and quickly put on ECMO. The ECMO machine did what it needed to do. It gave Henry’s lungs a chance to stop working for several days and just rest and heal. While on ECMO, however, the doctors discovered Henry had contracted a fungal infection. They immediately became very concerned about having foreign objects in his body (his port, the tubes for ECMO), and so they unceremoniously removed his port. Once off ECMO with healing lungs and back on the ventilator, they took Henry for an MRI. They were concerned about the fungus, and rightly so–the MRI revealed that Henry had fungus in his brain, deep in his hypothalamus.

From this point on, it was one step forward, two steps back. Henry fought so hard. He was faced with multiple life-threatening issues, and he kept on going. This included fungus in his eye, three aneurysms, a never before done brain surgery, SVT, a tracheostomy, fear of relapse, and much more. Eventually brain damage caused by the fungal infection caused his heart stopped for six full minutes. They were able to revive Henry, but that incident completely changed the course of action–they were told his brain would never recover. Henry died three days later in the comfort of his mom and dad’s arms listening to peaceful music and still cancer free.

***

Toby and Brenna knew how hard this loss was going to be for them as a couple, and for Elodie and George, Henry’s siblings. After they knew that Henry was going to die, they made legacy casts of his handprints and footprints. They were later able to use those to create many special pieces in a shrine to Henry and throughout their home. As a couple, they promised to communicate and be there for one another’s grief, and to be open with their children by continuing to talk about Henry, and how much he’s missed, every day. Of course it’s been incredibly hard, and of course they’ve had difficult times personally and in their relationship, but they continue to recommit to communicating openly with each other every step of the way. And that has helped their family grow into their grief together.

“Communication with your partner and children is so important. This is a life changing event. Everything needs to be honest and out there. This is not a road to be traveled alone.”

Brenna & Toby gave this advice to newly bereaved families

In an effort to really get it all “out there”, the Islelins are members of several grief groups. Rett’s Roost’s monthly bereaved parent meetings have helped them connect with other families, hear how they are coping, and share about their own tumultuous feelings. They also belong to The Children’s Room based out of Arlington, MA, which they highly recommend for their bereaved sibling groups. Toby hikes their local mountain, Mt. Monadnock, weekly for his own therapy and participates in their local Compassionate Friends group. Brenna has been in individual therapy to help understand and deal with her own feelings. George and Elodie participate in the bereaved siblings groups through Boston Children’s Hospital and The Children’s Room.

Toby dove into the world of grief books for himself and copes with “bibliotherapy.” There is a large range of books that he listens to including books about grief and the grieving process as well as books about signs from the other side and life after death. They bought just about every single grief book that exists for children as well, to help answer some of the questions that would come up for Elodie and George about where their brother is now.

On a regular basis, they honor Henry and his short, beautiful life. They attend ceremonies and services at Dartmouth Health and Boston Children’s Hospital where Henry, along with other children, is remembered. They do an annual ‘Hike for Henry’ where the main purpose is to invite other people to take time outside together as a family and enjoy nature, just like Henry did. They started a foundation in Henry’s name so they can give back to organizations that were special to him. They also do fundraisers for Alex’s Lemonade Stand Foundation throughout the year in Henry’s name.

The main thing that keeps them going, however, is that they created a memorial to Henry on the farm he loved to visit. Toby’s parents then gifted them that land, and they built a house right there. Henry’s Spot is now right outside for whenever they want to sit and remember him. They have pictures of Henry and the kids throughout their house, as well as his artwork, toys, and treasures. They talk about him as a family, remember him, and celebrate him constantly.

Henry was an incredible child! For most of his life, when people met him, they weren’t able to tell that he was battling cancer. He was full of life! He was happy and loving. He was so silly. He had just the appropriate amount of potty humor to drive his older brother crazy. Henry loved being outside and spending time at “The Farm,” which is the farm where his dad grew up – with his Mimi and Paipa. He also loved being with his other grandparents, Yaya and Papa. Henry went to the Montessori Schoolhouse of Cheshire County in Keene, NH for the toddler program and preschool. He loved learning and trying new things. He was cautious yet brave. He appreciated the small, gentle things in life – pretty stones/rocks, wildflowers, slow walks holding hands, little bugs, and more. He absolutely LOVED donuts and mac and cheese, tractors, and gators (the driving kind). During Henry’s “Doctor Days” he loved driving around in the Little Tykes car with his keys in the ignition – whether those were toy keys, real car keys, or a straw acting as a key, he always had a key for his car! While at the doctor he also loved his mac and cheese (every time), favorite nurses, iPad time (a special treat!), and playing doctor on dolls with all the appropriate medical tools – IV’s, port, syringes, and more!

***

We first met the Iselins during the pandemic when we were holding online grief retreats for parents. We asked Brenna how Rett’s Roost has helped them cope over the last few years without Henry, and she shared the following…

“We appreciate the monthly peer support meetings that are held. It’s really nice to connect with other bereaved families and hear how they are continuing to cope and survive. The last two years we participated in the annual Behold the Cold Polar Plunge, helping fundraise for Rett’s Roost in Henry’s honor. It is so therapeutic to run into a freezing cold ocean together as a family in memory of Henry. That got me more interested in cold water therapy in general, and now I love taking cold showers – something I thought I would never do. Rett’s Roost also sends special things throughout the year – maybe something for our surviving children’s birthdays, or the anniversary of Henry’s death. It makes us feel as though someone is continuing to watch out for us and that Henry is remembered. And although we have not been able to attend one of the family retreats yet, it is certainly something we hope to do.”

Brenna on how Rett’s Roost has been a part of their life since Henry’s death

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.”

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.

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.”

Alister’s Family

I met Amber and Eli at one of our Grief is Love online retreats for parents during the pandemic where I first heard of Alister, their youngest child. Alister was born with a rare & complex genetic disorder called Alagille Syndrome, which affected his liver and heart. Over the first 2 years of his life, they navigated the difficulties of having a medically complex child. Although he had many doctors’ visits and a long list of life-long medication, luckily, Alister’s life was not at risk. His older siblings adored him and the family felt complete.

Out of nowhere, on July 8, 2019, Alister was diagnosed with acute lymphoblastic leukemia. It was not tied to his genetic disorder but his already fragile health made it very hard for him to handle the harsh chemotherapy treatments. Alister was able to get into remission, but sadly died of septic shock due of a fungal infection 7 months and 3 weeks into his treatment in March of 2020, right at the start of the pandemic.

The family arrived at our retreat hoping to ease their sorrow by meeting others. It was a little harder for the teen siblings, but Abigail (age 6), the youngest of the three, was spunky and warm and clearly excited to be on a trip away from quarantine life. On the second day, Abigail, happily playing with the other kids her age, fell awkwardly and broke her arm, badly. Eli took her to the local hospital where they learned that the humerus was completely severed and Abigail would require immediate surgery at Boston Children’s Hospital.

After years of dealing with hospitals and emergencies, how could this happen on the one weekend where they were trying to focus on healing? Amber, Felix, and Ashleigh stayed at the retreat (since only one parent could go with Abigail anyway). The mood at the retreat became somber, but also supportive. As Amber told us on the last day, “They were with the best people to have something bad like this happen. Because we all know the triggers to this kind of trauma.”

Eli returned at dinner on Saturday with Abigail, to a table-full of unicorns and balloons. All the other kids came up to her and signed her cast and it really was a special reunion that brought us all closer. They somehow had the energy to come down to the bonfire, and in our closing circle the following morning, I gave gratitude for their grace and grit. I was amazed with how the entire family handled the very unfortunate situation. And I was reminded of how bad luck seems to follow families around for a while after the death of a child. That is why we offer the support that we do. Our programs are truly needed and appreciated by these star-crossed families.