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Our Families

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.