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Our Families

The Iorio Family

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.

The Hewitts

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.

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 Brown Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given? How did their treatment progress?

Eoin was diagnosed with Leukemia on September 21, 2016, one month after turning 3 years old. Eoin immediately started treatment and life was such a whirlwind as we were thrust into the childhood cancer world.

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

I don’t think we have processed all of this yet as Eoin is still in treatment until November 23, 2019.  Everything just moves so fast after diagnosis that you learn to just live in each moment and take it one day at a time.  My husband fell apart after diagnosis and was very emotional, especially because he lost his best friend to colon cancer the year before.  I quickly knew I had to be the rock and just plunged right into being there for Eoin and bottled up my emotions to get through those first months.

What are some of the things that helped you get through the initial months of diagnosis and treatment?

Support.  Support from friends and family and the creation of a totally new group of people we either didn’t know already or barely knew that quickly rallied behind us.  Friends did so many things for us–house cleaning, meals, getting our dogs groomed, visited us and brought food to the hospital. The family came into town and helped care for our daughter and help her transition and be a constant for her while Eoin was inpatient.  For those who couldn’t come to visit or help, just words and texts meant so much to us!

What are some of your child’s favorite toys, heroes, sources of comfort & joy?

Eoin had just turned 3 when diagnosed, so a lot of the toys we had were more toddler type of activities.  Suddenly, we were given superhero and “big boy” toys so this opened him up to a whole new world! We watched the Star Wars trilogy three months after diagnosis when we were so tired and wasn’t very mobile.  Our family fell in love with it! Having the new movies come out while he has been in treatment has been so much fun. We can’t wait for the next one to come out in December! Legos have also become a huge favor and keep him occupied.  Lastly, Eoin is a huge crafter and very creative. That has been a great outlet for him, especially when inpatient or during clinic days.

How did you find out about Rett’s Roost?

I was looking for support and not finding much locally available for kids who are in maintenance and doing well on treatment.  I did a search and luckily Rett’s Roost popped up. I was so grateful that we found a place and people we could reach out to.

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

Being connected to other families who understand this journey.  For us as a family, spending rare time together without distractions.  For my kids, seeing that they aren’t alone and while they may feel different at home, understanding there are other children who have cancer and siblings as well.  Eoin understands other children have cancer because he sees it at the hospital, but for my daughter, I think it was so important to discover.

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

It changes you.  We are grateful and yet realize this is also a horrible thing to go through.  So it is so many emotions and challenges and ups and downs. It is a life long challenge and won’t end on Eoin’s last day of treatment.

The Kaiser Family

  1. 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…

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

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

For joe dimaggio childrens Hosp

For the police officers assistance trust fund: you have to go to 2:40

The Tajima Family

Our daughter, Addison, was diagnosed with high risk neuroblastoma at eighteen months old. She had a grapefruit-sized tumor originating in her right adrenal gland, basically flattening all organs around it. Over the course of a year, she underwent six rounds of chemo, a massive abdominal tumor resection, a stem cell transplant including a one hundred day isolation, twenty rounds of proton radiation, and five out of six rounds of antibody therapy.

She is in the process of completing the final sixth round of antibody therapy. Watching this happen to our baby has shaken everything about ourselves and our family. What matters? What can we trust? What can we hope for? How can we be sure about anything in life?

Addison is now thriving, growing, and as happy as any other two year old I know. She lives each day to the fullest and seeks happiness in every situation. She is loving and thoughtful. I like to think that she has her priorities straight! In this lies our answers. Each moment is a moment to cherish. We can’t know what tomorrow may bring, but we don’t want to waste what we have right now. We laugh, love, and play as much as possible. We cherish our children and we’re grateful for each other. Today, this is enough.

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.