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!
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.”
Maya was a very sweet, funny, and happy little girl. She loved playing with her twin sister Abby, watching Sponge Bob, and spending time with family. While homeschooling during the pandemic, Maya’s mom, Kim, noticed that her hand was shaking while using a mouse. A few days later, she lost her balance and fell, which seemed odd. Maya had recently had major dental surgery and her parents wondered if her new symptoms were at all related; however the MRI showed the worst possible news–an inoperable brain tumor called DIPG (Diffuse Intrinsic Pontine Glioma).
On December 4, 2020, Maya’s parents were told that DIPG was a terminal diagnosis and that the only treatment was radiation, which is considered palliative. Kim recalls how she felt that day, “There are no words when a doctor tells you that your child will die and there is nothing we can do to save her. How can I, as her mother, not do ANYTHING to help my baby? Until this day, I still have no words for that moment but it is burned into my memory forever.”
After diagnosis, Maya underwent 30 rounds of radiation. The treatment was considered successful as the tumor shrunk and Maya regained functionality. After a very significant battle with their health insurance company, Maya also began an oral chemotherapy trial called ONC201. This trial required the Bragdons to travel from Massachusetts to New York City on a monthly basis from February through June of 2021. Maya’s symptoms remained relatively stable until July 2021, when they returned with a vengeance as her tumor progressed. Maya underwent a second round of radiation, which helped her regain some mobility, but she sadly continued to decline. Maya passed away peacefully in her sleep on January 9, 2022 at the age of 7.5.
The Bragdon’s attended a Bereavement retreat in June 2023. Kim says that the friendships she made through Rett’s Roost has made them feel so loved and she also really appreciates how welcomed her family felt by Jim and Deana at the retreat. Kim’s advice for other parents facing a terminal diagnosis is to spend as much time with your child making them happy, and make sure their last days are filled with joyful moments and love.
How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.
The first year with Laurel was beautiful.
We noticed when she was about 10 months old that she was easily fatigued and very picky when it came to food. Our pediatrician in Plymouth, MA dismissed our concerns. Her weight loss was described instead as her “being svelte and having great genes.” At her one year appointment, her pediatrician massaged her abdomen and Laurel shrieked, to which the doctor replied, “she must know she is about to get her shots.”
A week later, a softball-sized mass was discovered on her left adrenal gland at Children’s Hospital. I had rushed her there as I knew that something was seriously wrong – despite said pediatrician assuring me she was fine. Because Laurel was so sick upon arrival, she was intubated for a week in the ICU and that’s when we began chemotherapy. We stayed in the ICU for 42 days until we were transferred to the Pediatric Oncology floor.
What did receiving the devastating news of your child’s serious illness feel like for your family?
We didn’t receive all of the news at once, but over the course of a few days, we learned that the mass was cancer, that it was Neuroblastoma in its most malignant form, and that it had spread to her bones. I had a feeling at that point that she wasn’t going to make it. I stood over her crib in the ICU for 2 weeks without glasses on in the same outfit while she was intubated. I’m not sure if I prayed or bartered with a higher being. I told my husband that if she died, I would die too. A month later, I learned I was pregnant with our son. He saved me from taking my life.
How did your child’s treatment progress? Describe one or two of the hardest moments. If you can, tell us a bit about their final days and end of life.
Laurel’s treatment was excruciating to bear witness to. It pains me to even have to pick one or two hardest moments – I can think of two times where I howled crying for my dying child.
The first moment was after 3 months of intense chemotherapy when she was getting scanned so that we could make sure that the bone cancer subsided in order for us to progress with the next stage of treatment – Stem Cell Therapy. The scan was taking a really long time. She was sedated and they had to re-sedate her to keep scanning. Because my husband worked in MRI (at Boston Children’s Hospital at the time- go figure), he knew that something was seriously wrong. Her Neuroblastoma doctor came to the waiting room and told us that her cancer had only spread – that the chemotherapy had done nothing. What we had put our child through – all of the hell and agony of watching your kid throw up, lose hair, become a skeleton – all of this treatment had done nothing. The cancer was too aggressive. This was considered a “relapse” and the doctors gave her a 10% chance of living. I called my mom because she expected us home much earlier from the scan, and I howled and cried that she was dying, that Laurel was dying and we couldn’t save her, My belly was starting to show with her new baby brother and I wept uncontrollably for hours and days. That’s when I knew she wouldn’t make it. She lived another 11 months through integrative therapies (novel immunotherapy treatments and naturopathy).
The second hardest moment was a few short weeks after finding out she relapsed, I left her room to meet a best friend that had dropped off a care package for us. My husband was standing with Laurel – she was hooked up with a chemotherapy IV and she reached for something and fell down on the floor. Although I wasn’t there, it was like any toddler fall. But because her bones were so brittle, she ended up breaking her left femur (thigh bone). The resident doctor on the floor refused to schedule us an X-Ray, despite Laurel crying in pain. She instead ordered Tylenol and got an ice pack. My full mama bear rage came out – I told this resident, “F your ice pack, order her an X-Ray now.” She saw in my eyes that I was not going to back done. The X-Ray revealed a full fracture and Laurel was placed in a full spica cast that immobilized her hips and legs. She could not walk and had to be picked up to be moved for 6 weeks. She wore a diaper that I could not change because the cast was in the way and keeping her clean was very difficult, but I committed myself to making sure she did not get any skin infections or chafing. I was almost 6 months pregnant carrying Laurel around on my hip in August. We could not travel or bring her to the beach. It was so hard to watch Laurel go through this on top of everything else. She finally had the cast cut so that I could remove the top half and it like a Velcro contraption. One day, my mom’s good friend visited me to help with household tasks. She raised 6 children herself and a very seasoned mum. She knew that Laurel had another 2 weeks to go in the cast, per the doctors orders, but said to me softly, “Leah, let’s remove the cast and let her legs rest.” Laurel, as sick as she was, was so excited to take that cast off. First she laid flat, rolled around, and then got up to walk without question. I remember being able to bathe her for the first time without that spica cast and it was one of the happiest moments for us both!
Laurel was doing well with immunotherapy – she had about 12 rounds of it and it helped her Curie score (how prevalent her cancer was in her bones) decrease from a 17 at relapse to a stable 8 at Easter time 2018. We noticed though that she seemed to have increase leg pain. During a stay for immunotherapy, the team ran her vitals and noticed that she had more white blood cell blasts in her blood – this was a sure sign of another cancer, AML. Laurel was then diagnosed with an extremely rare cancer called MLL, which was *caused* by a chemotherapy drug, Etoposide. Treating AML and Neuroblastoma was like treating apples and oranges. From the date we received the secondary diagnosis to when she died, it was only 21 days. We decided to take her home to our little beachside home. She was on oxygen for a week and we had family and friends visit her. Someone gave her a beautiful bouquet of flowers and she took each flower out and handed individually to all of our people visiting her.
Laurel died in our bed between my husband and I in the early morning of June 15, 2018. We were up with her the night before, singing songs and reading and telling her she was the love of our life. I must have drifted off to sleep around 4 am. My husband stayed up with her and he watched her to take her last breath. He closed her eyes and woke me up to tell me she was gone.
I couldn’t believe how peaceful she looked when I cleaned her face and removed her breathing tube and the tape that held it to her. I washed her little cheeks and face and put her in a dress her aunt made her. We slowly took all the flowers we received in the home and placed them around her. We lit candles and said prayers and spoke to her and had to let her go. When someone came from the funeral home to pick her up, she carried Laurel in a blanket our family made her, flowers all around her, and our Newfoundland escorted Laurel to the van. It was the most devastatingly beautiful release of my life.
What made your child unique? What were some of your child’s favorite things to do during treatment? Did they have heroes, sources of comfort & joy?
Before Laurel was sick (and even after too), strangers would stop me and tell me how she looked like “an old soul” with those big eyes. Laurel was kind and gentle. She always gave things away. She loved ladybugs and pointed them out in books or whenever she saw one.
Laurel loved to dance and wiggle. Despite everything she went through, she only wanted to smile and comfort us.
Before she passed away, her Dad tucked her in one night and she touched his face with both hands and said clearly, “I’ll miss you Dad.” She was only 26 months old.
How are you dealing with your grief? How are your surviving children or partner managing now? What are some of the things that help your family keep going?
I’m in my 4th year of bereavement this year and I am finally able to live the day-to-day without intense rage and anger for what happened to our sweet Laurel Pearl. My anger ruled my life for a few years. I remember being unable to see children for a long time, I could not even look at a family or friend’s child. I became pregnant with our third baby, Julia, three months after Laurel’s death. My pregnancy kept my sober – it allowed me to process what had just happened with a clear head. After Julia was born in 2019, I went on and off antidepressants to just get through the day. So much had happened in so little time, but it became better for me to feel these emotions instead of numbing them out with medication.
Our family keeps going because it’s simple – what is the other option? I can’t spend the rest of my days living in a dark basement wallowing in my grief. Boden and Julia deserve a happy childhood and the best from their parents. My husband and I pledged to keep going no matter what. Yes, it gets very difficult and the grief of our former life and the questioning of the “what could have been” is hard to not get wrapped up in.
There was one moment I remember though – and this is a moment I will never forget. We were inpatient in December 2017 and Laurel was asleep in the hospital bed. I crept out of the bed and went to wash my face. I was standing in the bathroom, 9 months pregnant and my face was probably looking ravaged and tired. I remember looking into the mirror and telling myself, “you are doing this – you are giving it your all – no matter what happens, she knows how much you love and care for her. Keep going, Leah.” And so, I did. That moment was a pivotal point in my life as a young mom. I forgave myself and God or Buddha or higher power. I acknowledged how hard it was and how hard it would be going forward. I surrendered.
Do you have any advice for a family facing the end-of-life of their child? What helped you most? Are there any organizations that we can share as resources to other families?
Well, I know not every family can take their child home, but that decision brought my husband and I great peace. I also decided not to bury Laurel, instead she was cremated. I think about that now as we have moved different states and I am able to keep her close to me. We had a porcelain vessel made to hold her, ordained with gold and turquoise. It reminds me of the Sea, of Moana, of Laurel.
How has finding Rett’s Roost been helpful to you?
The Roost has taught me to process Laurel’s death in a holistic way. It has allowed me to meet other bereaved cancer moms and dads that I would otherwise not have known. I learned that I don’t have to go through this grief journey alone and I do not have to feel terrible inside for all of the trauma we went through.
My heart and soul are aligned with Rett’s Roost’s mission. We will grieve as parents for the rest of our lives. But we must forgive ourselves at some point and this organization has helped rebuild my mind, body, family, and community.
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.”
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.”
In October 2015, the Iorio family, Melissa, John, and 4-year-old Luke, should have been planning their Halloween celebrations. Instead, some unusual bloodwork sent the family to Boston Children’s Hospital where they learned that Luke had Acute Lymphoblastic Leukemia, or ALL. “It was like a truck hit us from behind,” Melissa, Luke’s mom, said. Not only did they have Luke, but also a new baby– Matt.
For three years Luke battled ALL, with daily chemo and monthly lumbar punctures. His treatment involved steroids, which caused weight gain he has struggled to lose. Luke handled treatment well overall, with some setbacks and lingering side effects. “He has some challenges in reading, some self image issues from the weight gain, and various therapies to deal with the after-effects of treatment. They’re manageable,” Melissa says, a phrase that takes on new meaning as a cancer parent.
Now three years off treatment, Luke is 10 and in school. Luke enjoys playing with friends, building legos, music, and magic– something he’s quite accomplished at!
The Iorio family couldn’t have gotten through diagnosis and treatment without the help of supportive family and friends, and organizations like Rett’s Roost. After seeing a poster for the organization at the Jimmy Fund Clinic, Melissa submitted an application to our Shilo Farm retreat in 2017. There, she says, the family made lasting memories and lifelong friends, which they are incredibly grateful for. “Parent circles were the best part of the retreat. It feels so powerful, because it’s something we can talk about together and process. The experience always stays with you, whether just out of treatment or celebrating remission.” She continues, “The groups are so small and intimate, you really do form a fierce bond with these families over just a few days.”
Something the Iorios would like you to know about childhood cancer? “It affects the entire family, but made us– particularly the kids– more empathetic. Families become more aware and sensitive to the fact that everyone goes through hard things.” This month, Luke will have his last appointment after 5 years in remission. He (and the rest of the family) hope to be celebrating hearing the words “cancer-free” for Christmas.
During the beginning of Kailyn’s cancer journey in 2013 things were different. Upon entering the hospital, you were always greeted with a smile and a hello. There was always something to do or someone to talk to while they waited for yet another appointment. There were all types of activities, games, movies, treats and performances by clowns, music, massages for the moms, just so many things to keep their minds off of the fact that their 5-year-old little girl had a very scary brain tumor called Anaplastic Ependymoma.
This past February, 7 years after her original diagnosis, a new tumor was discovered. Not only that but during a planning MRI for surgery, they found an additional tumor, this one is inoperable. Kailyn is now 4 weeks into treatment with another 35 rounds of radiation, hoping that radiation will destroy not only any residual cells but also this new growth. This time, because of the virus, when they enter the hospital they are immediately shuffled to a line on the floor 6 feet from the person in front of them. At the reception desk they are given new face masks and squirts of sanitizer, then head straight to treatment through almost empty, silent hallways. There is no one to talk to or compare stories now as they wait. No Child Life specialists to make them smile. No one to comfort them or put their arms around them or hand them a tissue. ALONE, ISOLATED, AFRAID, EXHAUSTED are only a few words Kailyn’s mom used to describe how this pandemic has made everything so much worse for cancer patients and their families.
Through everything Kailyn has grown to be an amazing young lady with her own unique quirks. Her mom Alison knows what her daughter is facing and told us, “I am broken everyday wondering to myself just how far this disease is going to go. How much of her life it is going to take away, and when and if it does, have I done enough to fight it?”
This is our last plea for #givingtuesdaynow. We need funds to help provide grants to Kailyn’s family and several others that are going through treatment during this time of isolation. It’s so simple to give $5 or $10 through Facebook. You can also donate on our website or through the Paypal Giving Fund.
Seth was preliminary diagnosed at 5 months in December of 2016, but his diagnosis of AT/RT (Atypical teratoid rhabdoid tumor of the brain) was not confirmed until mid January 2017. Seeing the dates now does not seem like a long time but it felt like an eternity in the moment.
How did his treatment progress?
Seth’s treatment was slow to start due to the amount of time it took to get a definitive diagnosis. We spent 6 weeks from the time they told us he most likely has this really terrible and aggressive cancer to when we actually received confirmation and his treatment followed the same path. If there was a bump in the road Seth hit it! Beginning with the wrong type of central line being placed, to fevers, RSV, and other bumps along the way Seth didn’t begin treatment until February 3, 2017.
His type of treatment was aggressive and they told us it would be difficult and Seth would be in-patient for weeks on end. He did defy all odds and made his way home pretty regularly but we also spent a fair share of time in the hospital. Seth was a trooper through it all and for the majority of the time had a smile on his face.
In early June 2017 we got amazing news that the treatment was working and the tumors in Seth’s brain had shrunk. They were so elated with his reaction to treatment that they were going to begin preparing Seth for the stem cell transplant phase of treatment.
As parents we were so excited. Our son was going to make it, and although the stem cell transplant process is hard and grueling on everyone involved it was going to keep Seth with us so we were ready to move full steam ahead.
But Seth’s cancer had different plans, during the testing needed to move toward stem cell transplant a large tumor was found on Seth’s right kidney; and it had grown during the time that Seth was receiving chemotherapy. Why his brain responded and his kidney didn’t is something we may never know.
From the time we found out about this as parents we wanted to enjoy our time together as a family. Keeping Seth as comfortable as possible for as long as we could have him with us. However, the option to remove Seth’s right kidney was posed to us as potentially giving him another possible 18 months. How could we possibly refuse that opportunity? They weren’t even sure this was AT/RT so we went for it. Seth’s right kidney was removed and he recovered nicely.
It was 2 weeks later that we were doing additional testing to determine next steps for Seth when an MRI revealed that the tumor had grown back in the same place to half the size it was previously, he had spots all over his lungs that were too numerous to count and a concerning spot on one of his vertebrae.
Devastating doesn’t even begin to describe how we felt. We had his kidney removed to give him, give us, and our family more time and now we’re right back in the same devastating position.
At this time we took Seth home for as long as we could but ultimately decided to return to the hospital when things got worse because we didn’t want him to suffer. We had a wonderful few days as a family having sleepovers at the hospital and just being together as a family of four. Seth ultimately took his last breath on August 30th in my arms.
What did that devastating news feel like for your family?
Through the whole journey we were hit so many times with devastating news. The initial mention of AT/RT – how can our perfectly beautiful and healthy baby boy have this terrible disease with no sign of anything. How will we do this financially, emotionally, physically? How will this effect Sadie? Could she have it? Do we have it? So many things spiraled through our minds.
Then realizing that you couldn’t save your son. A terrible feeling that no parent should ever have to experience.
And lastly having your infant son take his last breathe in your arms. Something I would never wish on anyone but also something I wouldn’t change for a second. I was there to bring him into this world and I was there to ease and comfort him on his way out.
What were some of the things that helped you get through the initial months of diagnosis and treatment?
Our friends, family, and employers really rallied around us from the start and haven’t stopped. In the beginning it was just spending time together, meal drop offs, and eventually it grew to financial support, ensuring that Sadie was well cared for when either of us couldn’t be with her, dropping everything at an instant when we had to take Seth to an appointment or the ER.
What were some of your child’s favorite things to do? Did he have super heroes, sources of comfort & joy?
Seth was so young through all of this that he couldn’t tell us what he wanted to do but he always wanted to be held and snuggled, he loved his swing and rocker, his eyes lit up when Sadie came to visit or when they could play together, he loved throwing his toys on the ground and making us pick them up over and over again, he listened to music with my husband, and his favorite toy was the syringe for his G tube.
What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?
By far, it is the lasting friendships formed and finally having people who understood what we were going through. People who had those same hard questions and terrible thoughts running through their minds.
What is the one thing you could tell everyone about childhood cancer?
Let’s be honest it sucks!!! You never think you’re going to be the one effected by this terrible disease until you are and it’s heartbreaking and life altering. But despite how awful all of it is, the diagnosis, the treatment, the sicknesses, the unbearable grief, there were a lot of good times and memories too. The circumstances weren’t the best but we enjoyed time as a family as often as we could and made a second family with the staff on the 9N floor at Boston Children’s Hospital. We really got to see how generous and loving people could truly be through what will hopefully be the worst experience of our lives that we carry with us each and every day.
When were your children diagnosed with cancer? What type of cancer diagnosis were they given? How did their treatment progress?
When Zachary was turning two he had a routine blood check at his 2nd-year pediatric appointment. That test came back abnormal, so they had us bring him to a local lab for another check. We were more annoyed than concerned at this point, as we had experienced low counts from the pediatrician’s office previously. When the doctor personally called us back the next day saying we needed to bring him to Children’s right away for additional tests, that’s when we began to wonder what was going on.
That day they found Zach’s hemoglobin was a 6 (half of the normal value) and his platelets and white cells were low as well. They admitted him, gave him his first of many transfusions, and scheduled his first of many bone marrow biopsies.
The following day they said that preliminary results showed blast cells that indicated leukemia (ALL). Over the weekend we met the team of doctors that were to follow Zach’s case for the next three years of treatment. We asked all the questions we could think of, signed dozens of papers authorizing treatment, etc.
Monday morning Zachary was to have a port put in, a lumbar puncture, and his first dose of chemo. The doctor walked in and said “Stop! He doesn’t have leukemia. Now, it is always a good thing when your child doesn’t have leukemia, but the bad thing is it’s going to get complicated from a diagnosis standpoint.” Truer words have never been spoken.
Over the course of the next fourteen months Zachary had at least six bone marrow biopsies, dozens of transfusions and lab draws, and his case was studied by three different Children’s hospitals.
Candice was 9 months pregnant during Zach’s first admission (the false ALL diagnosis) and they recommended banking the cord blood in case it could be used for a transplant in the future. We did and were disappointed to learn that his younger brother, Gabriel, was not an HLA match, so that wasn’t an option. The rest of the family was checked as well, but none of us were HLA matches for him, so they started the search for unrelated donors. It wasn’t clear yet whether he would need a bone marrow transplant or not but based on the range of diseases they were looking at, it was a possibility they wanted to be ready if/when he needed a donor.
When Gabriel was about ten months old he was very cranky one weekend and we took him to the urgent care thinking he might have an ear infection. They couldn’t find anything wrong, but a nurse made the comment that he looked very pale, which shot up red flags for us based on everything we had been going through with Zach for the past year. The pediatrician agreed to do a CBC lab draw and when the levels were low recommended that the same team at Children’s take a look at Gabriel as well as Zach’s next appointment.
Our primary doctor walked in that day and said, “The odds that two of your boys have the same thing are astronomical, but we agree something looks fishy, so we’ll take a look.”
After additional labs and a bone marrow biopsy revealed that both Gabriel and Zach had the same characteristics in their marrow, the doctors settled on a diagnosis of Idiopathic Myelofibrosis of Childhood. Myelofibrosis is more commonly seen in elderly patients but is exceedingly rare in children. Our two boys are 2 of 50 known cases worldwide.
So, it turns out that Gabriel being a different HLA type than Zach was really a blessing in disguise, because if they had been a match the team might have recommended a transplant right away while unknowingly replacing defective marrow with defective marrow…
What did receiving that devastating news feel like for your family?
After such a long and drawn out diagnostic phase, there was a small element of relief that there was finally a plan forward, but of course, it was a plan that none of us wanted. We had been hoping for a year that a bone marrow transplant wouldn’t be necessary. Come to find out that not only was it necessary, but two of our children would be undergoing the treatment was overwhelming and numbing.
The doctors refused to share treatment outcome data with us, stating that the little info they had was old and would likely look worse than reality with medical advancements. After continued pressure, our doctor finally said, “They are probably a little bit better off having the treatment than not.” So essentially, we were looking at a 50% success rate for each boy’s treatment.
Due to the rarity of the disease and the severity of the treatment we asked around to find the most knowledgeable team of doctors for the treatment. Hands down the answer were Boston Children’s.
It is always disruptive to the entire family when a child is diagnosed with cancer. In our case, we added a relocation from Columbus, OH to Boston in addition to learning that we had two boys needing treatment instead of one and that the treatment was risky and invasive. The boys were officially diagnosed in September of 2014, we met with the doctors in Boston in October, then packed up our house and relocated in February of 2015.
It’s hard to overstate the disruption to our family life. Everything changed for all of us.
What are some of the things that helped you get through the initial months of diagnosis and treatment?
We had a somewhat active group of friends and family following the boys’ journey on social media and they showed their support by wearing the boys’ care shirt on each of their transplant days. Financially, we were fortunate to have a “Critical Care” insurance plan that paid out when the boys’ treatments began. Those payments plus donations from our church back in OH and assistance from Dana Farber are what allowed us to continue living in MA for the first year.
What are some of your children’s favorite toys, heroes, sources of comfort & joy?
Gabriel really latched onto a small stuffed leopard which he named “Kitty”. He has only spent one night away from it in the three years since treatment, and that is because it was accidentally left at a store. Zachary didn’t latch onto anyone specific toy but enjoys games and things that allow him to build (legos, blocks, etc.)
Both boys really wanted our company and physical contact most during their treatments. We often found ourselves in their beds during hospital stays because they didn’t want us sleeping across the room.
What is your favorite memory or most positive outcome of attending a Rett’s Roost retreat?
We love being around other families that have had (and still have) similar struggles. In so many ways we feel like we live in a world where other people just don’t understand what we’re going through. Even most people that ask about the boys don’t really listen to the answer, they just want to check the box that they were polite and asked. Meeting and spending time with others who can relate feels like home to us, and the Rett’s Roost retreat was one way of connecting with others in that way.
What is the one thing you wish you could tell everyone about childhood cancer?
Three things actually: It’s way more common than you’d think, research for it is terribly underfunded, and it affects the entire family, not just the patient.
