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The Hanson Family

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope’s Story

Back in November of 2023, our friend Libby at Make a Wish NH contacted us about a little girl named Hope living in Rochester. Hope had a very rare brain cancer that I hadn’t heard of before, called Astroblastoma, MN1 altering Bendz 2. And because it’s such a rare type, even doctors weren’t too sure how to treat it. Unfortunately, no matter what they threw at her cancer, it kept coming back. And now it was back with a vengeance.

I reached out to Hope’s mom Tabitha to see if she wanted to connect. And so on the week of Thanksgiving, with a meal provided by the wonderful Bill and Wendy Irish from For the Love of Food and Drink in Wells, I went to meet Tabitha, Hope, and her two little parakeets.

Hope was already on hospice by that point, and she would only live another two months. I was struck by their story, because this family had been through a lot more than just cancer…

Hope Elizabeth Marie Levesque, lovingly called Hopey, was born on September 12, 2018. Her mom, Tabitha, and big sister Ashlyn, were overjoyed to have her join their life. She brought them joy during a difficult time, as they were abandoned by her father, who suffers from drug addiction. It would just be the three of them, against the world… nothing could stop this strong-willed trio of females.

For three years, life seemed normal. Tabitha worked to become a journeyman carpenter, proudly supporting her daughters. Soon after Hope turned 3 and a half, in the spring of 2022, Tabitha started to notice something was wrong with her little girl. She started to not be able to keep food down, and was vomiting frequently. She would scream through car rides. Thrashing in pain. The doctors suggested she might have a gastro-intestinal issue, or lactose intolerance. This was just the beginning, however, because soon Hope started to lose her speech, and wasn’t able to lift her left arm.

Sadly, her doctors still were not seeing the signs of a brain tumor. For some reason, it is very common for pediatricians to avoid checking for cancer in children right away–like it is a rare, 1 in a million chance. We hear from so many families that their pediatricians brushed off these most obvious signs and symptoms. The fact is, 1 in 285 children will have cancer before they turn 20. And that ratio indicates that it is actually quite common. Everyone knows that early detection of cancer is so key. But for Hope, the doctors refused to see the severity of her condition.

In May of 2022, they reached a breaking point. Hope was in constant pain, particularly at night. She went from dragging her leg to no longer walking at all. Tabitha decided it was time to take her daughter to a new set of doctors, at Wentworth Douglas Hospital in Dover, NH. At first, they seemed annoyed. Why would she bring her daughter there when she had a doctor in Laconia (where they were living at the time)? But Tabitha persisted–why would no one help her baby? Finally the doctors agreed to do a full work up. Bloodwork came back normal, so they ruled out a seizure or stroke. She insisted they take a CT scan of her brain next… and that’s when they finally noticed the tumor, which was already 3″ in size.

Hope was rushed by ambulance to Mass General Hospital’s ER. The room flooded with doctors to prepare her for an emergency MRI. An oncologist came in to talk to Tabitha to inform her of the urgency. They sat her down and told her that Hope would need to have immediate brain surgery, or else she could die very soon. The surgery took 6-7 hours and the whole time Tabitha wondered if she’d ever see her little girl open her eyes again.

The gross total resection was a success but it left Hope in so much pain. She didn’t understand what was going on, and with the transition from anesthesia to opiates she became uncharacteristically angry and unmanageable. Although she needed to lay down and rest, she wanted to be upright. But in her thrashing, she split her wound open. They put a cap on her head, but she hated it. And wanted to rip out her IV. It was scary for her mother to watch her sweet little girl so furious and confused.

After spending a week in the hospital, she was released to Spaulding rehabilitation center in Boston for another two weeks. On June 30, she received her first proton delivery radiation treatment at MGH. For the next 7 weeks they stayed at RMCH. While there, she contracted RSV and had to pause radiation for a week. Luckily she recovered and would get to go home for 4 weeks, which would include her birthday celebration, before she would start chemotherapy. Her chemo treatment took place over the fall. Her tumor biopsy had come back “unmethylated” which wasn’t good news. That would be mean that she’d have to receive Lomustine (CCNU, CeeNU) instead of the more common Temozolomide (TMZ) treatment protocol. They weren’t sure this would work to keep the cancer from growing back.

On Christmas day of 2022, Hope woke up and opened three of her presents. Suddenly, she went into a seizure. Tabitha called 911 but they sent an ambulance that would transport her to Frisbee Hospital but not Wentworth Douglas. Because of the holiday, Tabitha was having trouble getting in touch with MGH. The EMT checked Hope’s vitals and told her she could drive Hope to her preferred hospital. At WDH, they did a CT scan. The results showed 3 new tumors. Hope was then immediately transferred to MGH by noon on Christmas Day.

MGH did many tests. They decided to discontinue the CCNU chemotherapy and started her on Avastin. Because of the location of the new tumors, she would not be eligible for surgery. They stayed in-patient for one week at which point Tabitha contacted Make-a-Wish to try to rush her trip. Things were not looking good for her sweet little girl.

On 2/24/23, Hope got to take her Animal wish vacation in Florida with her mom, sister, and grandmother, staying at Give Kids the world. Luckily, Hope didn’t have the same symptoms as before… there was no pain, vomiting, or left side weakness with these new tumors. She was in good spirits for her trip and got to enjoy Sea world, Animal Kingdom, Universal Studios, and Discovery Cove.

Hope had another scan on 3/10, and they learned that the Avastin had worked on 2 of 3 spots… she was now eligible for surgery where they removed the last tumor and planted radioactive seeds. The radioactive seeds would be active for 97 days. But after surgery, the left sided weakness started to return. At the end of May, she had a stroke. And another in June. She was hospitalized for a week each time. Her M1S1 and A1 arteries in her brain had thinned out so much that they branched out and she was having a lack of blood flow. They diagnosed her with William Moyamoya disease and prescribed blood thinners. But if she had a temper tantrum or got dehydrated, she could have another stroke, and one more would be devastating to her brain function.

September arrived and Hope’s 5th birthday party was amazing. Because she loved animals so much they rented her a petting zoo, which included pony rides. She also had a bouncy houses with water slides. Tons of her friends and family showed up. She played and got to open lots of presents. Her favorite gift was her beloved parakeets, Oreo and Cookie. Sadly, Oreo passed away a couple days before Hope.

Her next scan was 9/6. The doctors said the scan showed spots that looked like necrosis (dead cancer cells), but Tabitha knew it was the cancer coming back, and didn’t feel the same optimism as the medical team. They encouraged Tabitha to send Hope to school. But she was facing the same deficiencies–pain and nausea at night mostly. On 9/10 Tabitha noticed a bump on Hope’s forehead. It grew as the weeks passed. By her next scan on 11/7, her whole forehead was swollen. This lead to an emergency MRI where they confirmed two new masses. Tabitha’s intuition had been right.

At this point Hope’s doctor, Dr. Ebbs, gave Tabitha the devastating news that nothing more could be done. Throughout Hope’s treatment Tabitha had a good relationship to Dr. Ebbs. He visited every day when they were in the ICU or clinic or in-patient. He’d gave them all the time they needed and answered all of Tabitha’s questions with care and concern. He even gave them his cell phone number in case she needed to call.

Tabitha was told she could stay in the hospital but she decided to take Hopey home, knowing that was where Hope was happiest and that she could come back at any point if she couldn’t handle Hope’s medical needs or pain. Because the previous Christmas had been so traumatic, and since they weren’t sure how much time they had left with Hope, they decided to celebrate Christmas early on 12/2.

Cornerstone hospice started to visit to the house regularly, but it was never enough support. Hope needed a lot of pain mediation (which she adamantly hated taking) and Tabitha was beyond stressed caring for her very sick child. On 1/6, Tabitha made the choice to go back to MGH because Hope started violently throwing up, couldn’t breathe, and was experiencing massive headaches even with frequent doses of morphine and a fentanyl patch. They would be there for the final two weeks of Hope’s life.

The Friday before she passed Hope’s favorite nurse Lindsey came in to visit her. Hope had been sleeping for 3 days, but was able to engage by lifting her leg and gave her signature “no-no finger” to show her love.

Her last 24-hours were extremely traumatic. She was in so much pain despite all the medications, and kept waking up screaming for her mom to call the doctors. Tabitha was worried and called her family friends and Hope’s grandmother to come visit. After they left, Hope’s condition declined even more. At 5pm on Saturday she had a seizure, sitting up and grabbing for something. This was the first of 3 sets of 13 seizures. The doctors could not really help and were just giving her ativan and more pain medication. They would not admit that this was the end for Hope. After the last one, she never moved again.

Tabitha called for her mother to come back at 10pm because the she noticed Hope’s breath becoming crackly and uneven. Dr. Ebb came in at midnight after just returning from a vacation. He sat with them for several hours and admitted that the time was near. Ashlyn and Tabitha’s sister arrived in the middle of the night. After visiting for a while they went to sleep but Tabitha stayed awake by Hope’s side. At 5:50am on January 21st of 2024, Hope’s breathing changed and became softer and more spread out. She took about 5 gentle breaths and then just stopped. It was the end. Tabitha sat with Hope and a few people came in to visit, including Tabitha’s childhood best friend’s mom and neighbor, Sonya, and Angie, the mom of Hope’s best friends.

Hope was a fighter, there is no doubt about that. She was also very generous and loved putting candy in her little backpack so she could hand it out to friends on the playground. She loved her friends and would always try to wake up to play with them when they visited her, even at her sickest. Hope hated the dark, and especially when she had a tumor in her head. She found solace in a little light-up star pillow and her favorite baby blankie (no other blankie she received during treatment ever compared).

Her love for animals was fierce. She got to ride a pony three different times during her life and was deeply comforted by her birds, Oreo and Cookie. During the last weeks of her life she was able to visit Beecher Grogan’s farm, where they received a family portrait session and got to pet all of the farm animals.

Tabitha’s employer at North South Construction services has been extremely supportive though this whole time. They raised money for Hope and offered to pay for her services. They let Tabitha take time off when she needed and then took her back immediately when she wanted to work. And Tabitha also felt greatly supported by the people at Make a Wish NH, Cops for Kids with Cancer, Hope Floats, and the Children’s Brain Tumor Foundation. Although Hope never got to attend one of the Positively Healing Retreats for survivors with Rett’s Roost, we believe our grief services will be a great support to Tabitha and Ashlyn in the coming years.

If you feel inclined to help this single mom and teen daughter get through this most tragic time of their lives, please donate to their gofundme:

Hope’s Gofundme

The East Family

Before Owen East was diagnosed with DMG (diffuse midline glioma) on June 18, 2021 at the age of 4, he was a perfectly healthy, happy little boy. His parents, Erica and Brad, brought Owen to the emergency room after he became very lethargic one day. In the few weeks before that, he had also been experiencing intermittent headaches and some vomiting–which are common signs of a brain tumor that most parents might not know. Erica, however, is in the medical field, and knew something was wrong. 

At the time of diagnosis, Owen’s little brother Andrew was just three weeks old, which made everything feel even more difficult and chaotic. Erica says that finding out about the terminal diagnosis was like entering a parallel universe and that it was extremely difficult to care for and bond for a newborn while in the midst of diagnosis and treatment for Owen. 

After completing radiation and starting an oral chemotherapy medication, Owen did remarkably well for 1.5 years post diagnosis with minimal symptoms until he began to have balance issues and new tumor growth after his 6th birthday. His ability to walk slowly declined to needing a walker and then a wheelchair shortly before the end. Erica says It was hard watching him lose the ability to do his favorite things like racing /running and dancing. Owens’ decline at the end was quick and within a 2 week period from his last day of kindergarten, he could no longer stand, hold his head up, swallow and had difficulty talking. He slept more and more and passed peacefully, with his parents, in their bed where he always slept, on June 30, 2023. 

Owen was spunky, mischievous, funny, loving and kind. He loved to play pranks, make fart jokes and songs, and do goofy dances he made up on the fly. He had a wonderful singing voice and could often be found belting out his favorite songs even in public. Before his cancer progressed, he would often run fast like his heroes, Sonic and Buzz Lightyear. He LOVED school and mac and cheese.

When asked how they are doing right now, still so soon after their loss, Erica confided in us,

“We are only 2.5 months out and our grief changes from day to day. Sometimes a small trigger can spiral into a very sad day. Other times I watch videos and am able to smile and laugh as I’m brought back to that moment. Andrew is now 2 years old and we try to keep Owen’s memory alive by showing him videos and saying his name often.”

Erica’s advice to other parents facing a terminal diagnosis is to “treasure every moment and let your child have what they want to keep them happy and comfortable.” She also told us she is thankful that Rett’s Roost has helped them find a community of parents and families who have a shared experience, which makes them feel like they aren’t alone. The East family will be attending a bereavement retreat this coming November. 

The Austin Family

How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.
In the spring of 2019, Evan started to have some issues with balance and was tripping and falling a lot. He also started having some emotional difficulties such as frequent crying and meltdowns, which was very unusual for him. In the few weeks prior to his diagnosis, he also developed some drooling, slurred speech, lethargy, and headaches. We brought Evan to our local pediatrician and thankfully, he took things very seriously and advised us to go to the emergency room in order to expedite an MRI. That same day, we went to Barbara Bush Children’s hospital in Portland, ME and our nightmare began. Evan did have an MRI at 9pm that night, which they told us would be about 45 minutes. After two hours had passed, we just knew something was really wrong. After the MRI, close to midnight, we were called into a conference room with a pediatric doctor that was there that night. She told us that she had “bad news” for us and that Evan had a brain tumor. She showed us the slides from the MRI and pointed out the tumor, but said since was not a neurologist, she couldn’t really provide us with any further information, and we would have to wait until the morning to meet with a specialist.

What did receiving the devastating news of your child’s serious illness feel like for your family?
After finding out that Evan had a brain tumor, we were in complete shock. We obviously knew that something was going on with him, but honestly never considered this. The following morning, we were again pulled into a conference room with an oncologist, palliative care doctor, and a social worker. It was then that we found out that not only did Evan have a cancerous brain tumor, due to its location in the brain stem, it was considered inoperable, that chemotherapy was not an option, and that palliative care (radiation) was the only option. We were told he had approximately 9 months to live. I think this was the worst day of our lives; learning that our son had cancer and that there was nothing we could do to save him was just absolutely devastating. It’s something no parent should ever have to live through. Two days later, Evan had a brain biopsy surgery and spent the rest of the week in the hospital.

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.
In August of 2019, Evan began his first round of radiation, which would be for 30 days. Because he was only five, our team insisted that he needed to be sedated for each treatment, which also meant having a port surgically implanted prior to starting radiation. Each morning we had to be at the hospital, which was an hour away, for 7 am. About two weeks into radiation, Evan’s port became infected and he had to have it removed and was hospitalized for another week and received IV antibiotics, for which he needed a PICC line. Fortunately the infection was able to be treated and he was discharged with home IV antibiotics, which he would need for several weeks. I don’t recall a home health nurse ever coming during this time, other than an initial visit, which meant that Brent and I were responsible for running the pump and flushing out his PICC line daily. Evan did remarkably well with radiation. He started to improve drastically about halfway through and had almost complete symptom resolution. Evan was able to begin kindergarten at the end of September 2019, something that we never thought he would do. Evan also started a targeted oral chemotherapy medication at that time.

Over the next three years, we really tried to live every day to the fullest, which was difficult because we were experiencing anticipatory grief, along with considerable anxiety around when Evan’s symptoms would begin to come back. Despite the pandemic, we traveled all over the country as a family and went on as many adventures as we could. When Evan was first diagnosed, I stopped working and Brent began working from home full-time, this meant that we got to spend a lot of time together as a family, which we really enjoyed and cherished.

After about a year, Evan began having some symptoms again. After much debate, we opted for a second round of radiation, which was 20 courses. Our medical team was hopeful that Evan would respond well, since he had the first time, but it was not without considerable risk. Evan completed a second course of radiation right after Christmas of 2020. This time, we advocated for Evan to be awake during radiation as we did not want to take the chance on another port or PICC line. Evan was the first child to have radiation awake at Maine Medical Center, and he did so well! He was so brave, it was really amazing, but I guess not really surprising given the special kid that he was. He again responded very well and was able to return to school and even got to play on the town baseball team that summer. Shortly after completing radiation, Evan was started on a new trial medication for which we had to travel to Rochester, NY every other month to obtain.

In December of 2021, Evan started to decline quickly. We had just started him on a new oral chemo combination a few months before, but it was not helping. In just a few weeks, he went from going to school, playing and eating, to becoming so unstable that he was unable to walk without assistance, could no longer eat solid foods and was having difficulty speaking. This was a very scary time as we knew that we were likely out of options at this point. We ended up starting Evan on steroids again, which we always said we would never do because of the horrendous side effects, but they did help his neurological symptoms for a short time. Evan also underwent a third, short course of radiation as an attempt to stabilize the tumor. He also started Avastin, which is an IV chemotherapy type drug that can help reduce swelling in the brain. We continued this for a few months, until it became too difficult for Evan to travel to Portland. Over the next few months, Evan lost his ability to eat, speak, walk, use his left arm, and no long had fine motor skills. He also gained about 20 pounds in just a few short months because of the steroids, which caused him to have really bad stretch marks on his stomach, that eventually split open. These were very painful and required wound care and daily dressing changes.

Because of all the side effects, in April of 2021 we decided to discontinue steroids. This was a very difficult decision as we knew that he would likely decline from a neurological standpoint quickly. Instead, for a short time, the opposite happened. Evan’s mood improved dramatically and he began laughing and trying to smile again, and his speech also noticeably improved. We really maximized this time that he was feeling better and went on a few long weekends, saw friends, took him to our daughter’s sporting events, and even took a trip to Florida! I remember we went to Vermont to be with Brent’s family for Memorial Day Weekend and he was still in good spirits, but the following week started to decline quickly. Evan could no longer swallow or take in anything by mouth, so we opted for a feeding tube procedure. Shortly after that, his heart rate began to sky rocket and then his oxygen levels began to drop and he needed to be on continuous oxygen. The night of June 8th, Evan had gone to bed and woke up shortly after complaining of extreme thirst, but since he was unable to swallow without choking, this was very difficult to manage. All night we were giving him drops of gatorade with a syringe, but he would eventually start choking, so we would have to use the suction machine and then also use a nebulizer to clear out his lungs. At this point Evan was regularly using morphine, so the next morning our hospice nurse suggested to give him another dose of morphine and some Ativan to calm him down. He fell asleep on the couch in the living room and would never wake up again.

We spent the day snuggling with him on the couch and friends and family stopped by to see him and say goodbye. That night, my husband had the foresight that Evan would likely pass away, so we all decided to camp out in the living room with him. Evan’s heart rate continued to sky rocket and around 1am his breathing pattern changed and he took his last breaths. The three of us were holding him and it was an extremely peaceful transition. As strange as this sounds, it was how we hoped it would be for him. In some ways I felt very similar emotions as I did when he was born, which was just essentially an immense amount of love, only paired with sorrow instead of joy. We changed him into his favorite Super Evan shirt and wrapped him up in a special blanket given to him by friends. The next morning, family returned to be with him and we were able to keep him home with us until the funeral home came around 9 am.

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?
Evan really defied all of the odds from the beginning. When Evan was first diagnosed, we were told he would only live for about 9 months, but he not only lived, but really thrived for almost three years. I think this may partly be due to all of the alternative therapies that we tried, including a strict Keto diet, high dose cannabis, hyperbaric oxygen therapy and multiple supplements. I think the other part was Evan’s spirit. He was such a happy kid all the time. He knew that he had cancer, but he had no idea that he was going to die. One thing that brought Evan a lot of comfort the last few months was seeing his friends. We had people sign up to come over and read to him and we had LOTS of visitors, it was really wonderful. The other main source of comfort was always doing Lego sets. We spent so much time putting Lego sets together, and when he was no longer able to help, he would sit and watch us put them together. Evan was filled with so much joy and he LOVED life, his friends, and his family so much.

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?
After Evan passed, I think we all felt a small sense of relief that he wasn’t suffering anymore and were somewhat in shock/numb. Now that some time has passed, it just seems like it’s getting harder. The realization that we are never going to see him again has really set in. We just miss him so much and think about him nearly every second of every day. We keep going because there really is no other option. It certainly isn’t easy, but we know that our daughter needs us and we want her to have the life she deserves. We also want to live a life that would make Evan proud.

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?
I think the biggest thing for us was focusing on quality of life at all times. We always did what we thought was best for Evan and tried not to let our own emotions get in the way of this. I also think it’s really important that you can hold on to hope and still accept that your child is going to die, and accepting this does not mean you are “giving up.” We also knew that we were living on borrowed time, and that was how we lived.

One of our favorite organizations (aside from Rett’s Roost) is The MaxLove Project. Their mission is helping kids and families thrive, while going through treatment or facing a terminal illness. Without their support and resources, I honestly don’t know if Evan would have done as well as he did for such a long period of time. I am also currently participating in a grief support group through MaxLove.

How has finding Rett’s Roost been helpful to you?
We were connected with Rett’s Roost very shortly after Evan was diagnosed. Deana has personally been a great support to us. During the pandemic, we were also given a family grant which helped us take an RV trip of a lifetime out west. I have participated in several mom’s outings and in July 2022 we attended a bereavement retreat. Connecting with other families has been so incredibly powerful. Rett’s Roost provides a space for bereaved families to authentically connect with each other and openly grieve.

 

The McCary Family

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

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

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

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

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

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

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

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

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

The Rouleau Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

Eliana was diagnosed at 5 months old on December 24th, 2017 with Acute Myeloid Leukemia .

How did their treatment progress? If you can, tell us a bit about their final days and end of life.

Eliana started initial chemo treatment in February 2018, which the cancer didn’t respond to. She almost died from a staph infection. We were able to start palliative care after the cancer came back. She was able to come home and enjoy experiences every baby gets to have. After being home from March through September with no complications, she woke up one day not feeling well and having her eyes cross. After having a scan done, it was found that the cancer had spread to her brain. Within a week of the scan, she passed away. We were given the chance to bring her home under hospice care, and are still so grateful for her medical team who went above and beyond to help us bring her home to die. She passed away in our arms and in no pain on September 17th, at 14 months old. 

What did this devastating tragedy feel like for your family? What was early grief like?

There is a missing part in our family. We take peace in knowing what our faith teaches regarding where Eliana is, but it still doesn’t take the pain away. There were times where we had no words to express how we felt, or how we could move on in our lives without Eliana. Adrian and I are grateful to have each other to share the burden and cry together. Thankfully, we had a very good support system that checked in with us and reached out through the first year. We still have good connections with those individuals, and they help keep Eliana’s memory alive.

What helps you in your grief now?

Our faith has been integral during the journey we went through with Eliana, as much as after her passing. Adrian and I talk about her and tell our friends and family to not be afraid to share their memories with us. Counseling continues to give me a safe place to process all we went through. Running is another outlet for me to take care of myself and let out the sadness in a positive way.

If you have other children, how did they handle the whole experience? If it has been over a year, how are they now?

No other children, at the time. We have been blessed with another child since Eliana’s passing, though.

What made your child with cancer unique?

So many people say that she was a bright light in this world. Our pastor told us stories of parishioners that came back to the church because of her presence, as well as what she was going through. There was a sense of peace and joy when being with her. She loved life, and did not let her cancer stop her from exploring the world and enjoying all things. In her 14 months, she experienced more than what many get to do in a lifetime.

What were some of your child’s favorite things to do? Did they have heroes, sources of comfort & joy?

Eliana loved to snuggle, eat ice cream, tubby time, visit friends and family, cuddle with Mr. Monkey, read, go to the library, watch the fish in her fish tank, dance, eat bananas or pancakes, and play with her little people toys.

What is the one thing you wish you could tell everyone about childhood cancer?

That more research needs to happen for infant (and childhood) cancer cases.

What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat? 

Knowing that we were not alone in our grief- other families can relate to the journey we went through, and continue on.

What other organizations, if any, did you utilize during and/or after treatment?

Joy’s Network (NH)
B+ Foundation
Partners in Health
Childhood Cancer Lifeline (NH)
Aubrielle’s Hope (NH)

The Goodman Family

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

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

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

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

The Silvani Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

Joe was diagnosed with Stage IV neuroblastoma in June of 2015.

What did receiving that devastating news feel like for your family?

It’s hard to describe what it was like. Time stopped. Priorities changed in an instant. Suddenly our future was a giant black hole, a giant question mark, with a good possibility our child would die despite our efforts to save him. Our sole focus was on Joe, which put our other two children on the back burner.

How did their treatment progress? How is their health now?

Joe’s treatment plan was extensive and intense. Neuroblastoma is a very difficult cancer to treat, especially in Joe’s case where he had disease in his bones. He spent much of his treatment in patient at Boston Childrens Hospital. He endured 6 rounds of inpatient chemotherapy, tandem stem cell transplants (which are identical in procedure to bone marrow transplants, just with his own stem cells), 20 rounds of radiation, and 6 rounds of antibody therapy. All told, he spent 210 days in the hospital in the course of 18 months.

Joe made it through treatment relatively well. He developed a severe and rare complication while undergoing his stem cell transplants called transplant-associated thrombotic microangiopathy, which presented as nonexistent platelets and hard to control high blood pressure. He required an infusion of an expensive drug called eculizumab every 2 weeks to keep his condition controlled, which he was finally able to discontinue in February of 2017. By last year he was finally able to wean off all his blood pressure medications (which was 6 of them at one point) and is doing incredibly well right now.

What are some of the things that helped your family get through your child’s diagnosis and treatment?

Our family and friends were definitely saving graces for us. Often Joe would be admitted unexpectedly–usually in the middle of the night–, leaving Adam and the older two kids to scramble. Adam was the sole breadwinner as I had taken a year off from my position as a teacher in order to care for Joe. Friends and family jumped in to fill the holes in care and food, held fundraisers, and sent gifts to Joe while he was in the hospital. The Jimmy Fund and BCH also have incredible social workers and child life teams that help families in need with programs, grants, and opportunities for families who are inpatient.

How did your other children handle their sibling’s cancer challenges?

We were thankful that our children were younger when Joe was diagnosed, though they still dealt with the absence of me and Joe. We decided to try and shelter them from Joe’s care as much as possible so as to not scare them– they only visited the hospital a few times while we were there, and we tried to keep things as normal as possible for them.

What are some things that make your child with cancer unique?

Having dealt with adults for a large portion of his formative years, Joe can talk to anyone. He loves engaging people, asking questions, and being involved with everyone. He is inquisitive and thoughtful, just the sweetest boy around.

What is one thing you wish you could tell everyone about childhood cancer?

Many people believe when treatment is over, the ordeal is over. Honestly, it’s just begun. Post treatment life is nothing the family is prepared for, and support is needed even more as caregivers and families process the experience. There is a giant hole in services when it comes to post treatment support and care, especially in areas away from the hospitals of treatment.

How did you find out about Rett’s Roost?

Searching for other people in our situation, looking to connect with other families, I stumbled upon Rett’s Roost and its mission.

What is your favorite memory or most positive outcome of attending a Rett’s Roost retreat?

We attended a retreat at Duck Puddle Campground and it was amazing. We felt so taken care of, we were able to meet with a therapist who also had a child with a cancer diagnosis, and we were able to just be with other families who had similar experiences. It was so healing and needed, and I knew I just needed to be involved with this incredible organization. What makes RR special is that despite its roots in grief, Deana and Jim also open their hearts to survivors. This makes them very special indeed.

The Giordano Family

On January 9, 2013. Joey, just seven years old at the time, was diagnosed with medulloblastoma, an aggressive pediatric brain cancer. Five days later, our beautiful boy had surgery to remove the large tumor from the base of his brain on the brain stem. When he awoke, he could not walk and had no use of his left arm. After days in ICU he was placed on an inpatient rehab floor for several weeks enduring eight hour days of grueling therapy to learn to walk again and regain the use of his left arm.

Three weeks post-surgery, his treatment including whole brain/spine radiation and high dose of chemotherapy, was to start immediately and he was quickly discharged and flown to St. Jude Children’s Research Hospital in Memphis, Tennessee. Due to the list of side effects that radiation would have on his young body, we were then re-directed to the University of Florida Proton Radiation Center in Jacksonville where Joey underwent 31 sessions of radiation. We then moved to Memphis for six months for chemotherapy. During Joey’s time in treatment, we often spoke of our future move to Portsmouth, NH (we had been living in Florida when Joey was diagnosed) playing baseball and snowy winters. Of course, not knowing if he would make it to that day was indescribably heartbreaking. By the end of our stay, my beautiful curly blonde blue eyed boy, was now bald, pale, 39 pounds and was so weak he could no longer walk on his own. Gia who was just four at the time, never left Joey’s side for a minute, she has always been his biggest supporter.

Six months after returning home from St. Jude we decided that a fresh start was in everyone’s best interest. We made the move to Portsmouth, NH. My husband, retired from the Miami Dade Police Dept., and I put my career as an attorney on hold to be involved with the children as much as possible.

Joey and Gia are now flourishing in their new school despite the unusual and extreme hardships they have been exposed to and have had to overcome at such young ages. They are both amazing kids.

Joey is smart, kind, funny, friendly and handsome. He understands that he has had a second chance at life and he has no intention of wasting it. He’s not angry about the cancer, in fact, he’s just the opposite. He’s appreciative that it introduced us to some amazing people along the way, now life long friends. He’s involved in baseball, soccer, Planet Rangers, Lego Robotics and attends Make-A-Wish and St Jude speaking engagements with me.  He’s even raised money for Joe DiMaggio and St Jude.

We believe that you must look at all aspects of this journey in a positive light and use the experience to help others.  We have since given back both financially and with our time to Joe DiMaggio Childrens Hospital, St Jude Childrens Research Hospital, and the Make A Wish Chapters in both Florida and New Hampshire…and now we look forward to including Rett’s Roost.

Families who have dealt with pediatric cancer share a special bond.  We are part of a unique little club and all though we all have different stories and different outcomes, we understand each other.   Though we may not have been through it together or at the same time, we know what it felt like when we were given our child’s diagnosis, what it was like to watch them go through radiation and chemotherapy.  The beatings that the surgeries and medications did to their little bodies.   The fear in their eyes every time they require a shot, blood work or IV.  As parents, there is and will always be a constant fear that lies just below the surface. As for my family, for now, we are very content in our lives.   It may sound strange, but cancer brought out the best in our family and we are better people for having gone through this experience and we are closer for having done it together.

Thank you to Deana and Jim, for sharing your love for Rett with us through your retreat. It was a wonderful experience for our family and we are thrilled we were at the first retreat to see you make your dream a reality.

For make a wish
http://youtu.be/S5VJVzmgng4

For joe dimaggio childrens Hosp
https://m.youtube.com/watch?v=JZlxMCI1nlM

For the police officers assistance trust fund:  http://youtu.be/PyXC9XvaJRA you have to go to 2:40

http://oceandrive.com/behind-the-scenes-of-shareef-malnik-make-a-wish-ball

http://articles.sun-sentinel.com/2014-02-05/news/fl-cancer-students-fundraiser-20140205_1_joe-dimaggio-children-heart-run-2-students

The Kindstedt Family

One Friday in January of 2014 our oldest child, Amy, who was seven at the time, came home from school feeling “not quite right.” She had a low grade fever and she was a little tired. She also had a nagging ache in her chest, which her pediatrician had attributed to growing pains for months. Amy was always an active child who loved playing with her brothers, doing gymnastics, crafts and reading. By Monday she was in the ICU at Boston Children’s Hospital and we learned that the ache was really a collapsed lung and a nine centimeter mass in her chest pushing on her lungs and heart. We were shocked. Even though Amy’s situation was already quite uncertain, we were still completely unaware of how intense the next year would be for our family.

The tumor was too large and too enmeshed in vital organs to be removed so Amy was placed on an aggressive chemo protocol designed for high risk rhabdomyosarcoma in the hope of shrinking the tumor. In April the tumor was removed and a final diagnosis was made – Type 3 Pleuropulmonary Blastoma (PPB). Amy’s final diagnosis brought new concerns for our family. In 2008 this incredibly rare cancer was linked to a specific genetic mutation, called Dicer1 cancer predisposition syndrome. We learned that not only Amy, but also her youngest brother, Hunter, had the Dicer1 mutation.

PPB has a track record of being resistant to chemotherapy and radiation, so a more aggressive surgery was recommended. In September Amy had her left lung and diaphragm removed, as well as part of the lining around her heart. Two days after Amy’s surgery a CT scan of 20 month old Hunter revealed a 3 cm cystic tumor on his lower left lung, characteristic of type 1 PPB, the earliest stage of the disease. Although we were shocked and saddened by the news, we quickly took action to rid Hunter of cancer and he had surgery two weeks later. Thankfully chemotherapy was not recommended for his type 1 PPB.

There have been many other trials for Amy, she had two brain biopsies after a suspicious spot was found, a total of ten surgeries related to her treatment, months of illness caused by harsh chemo, a month of radiation and its side effects. She had to put so much of her childhood on hold. She missed out on countless days of school, and she often felt lonely and sad, on top of being sick.

Now sixteen months later we are grateful that she and Hunter are currently “no evidence of disease.” Amy even has a fuzzy head of blond hair but she still struggles with the emotional toll her disease and treatment took on her. Our family has a strong faith and we know that God will use this experience for good in Amy’s life. Amy feels great empathy for suffering children and she hopes to be able to help them in some way. Amy is wise beyond her years and she is very aware of the reality of her situation and how close she came to death. She also feels sadness that not all the children will be healed as she was. So although the phase of awful medicine and painful procedures is behind her, the emotional healing will take many more years. Our family is honored and touched to have been asked to be a part of the first group of Rett’s Roost. Connecting with other families and children who have a shared history will be instrumental in the recovery process.

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