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Our Families

The Sweger-Nesbits

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

December 16, 2015 Acute Lymphoblastic Leukemia

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

We found out early on that William had a rare subtype, so they wanted to go to a Bone Marrow Transplant as soon as possible. He had the BMT in April of 2016 and did amazingly well. He relapsed in January of 2017 and we were sent to CHOP for a clinical trial. The trial (Car T therapy) had been fairly successful up to this point. Unfortunately, it was not for William. We were sent back home to Penn State Hershey Children’s Hospital to try radiation for what cancer remained. William just kept hitting roadblocks and having issues. Our final week with him, William had been sedated and was not able to talk. I think that is one of the hardest things to accept; when we went into the hospital for the last time, we didn’t know that would be the last time we would actually get to hear William’s voice. One of the last memories I have with him conscious is one with fear in his eyes, as he didn’t know what was going on. Although the nurses told us that William shouldn’t be able to communicate with us that last week, he did. He would squeeze our hands when we asked him to, or when we were talking to him. His strength through it all amazes me to this day. In his final hours, William was surrounded by myself and my husband, as well as two of his sisters (all four were given the option to either stay or go, and two just didn’t think they could handle it). When it came down to it, my husband had to tell William that it was okay to let go. William was always more concerned about those that he loved rather than himself, me especially. Derek had to tell him that I would be okay; that William could go now. Walking out of that hospital without my son was the most difficult thing I have ever had to do, and as I continue to put one foot in front of the other every day since.

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

There really are no words to adequately describe how losing your child feels. It feels like your heart has been completely ripped out of your chest and the hole is just left hanging open. Early grief is like a fog. I felt like a stranger in my own skin. I didn’t feel like I fit in or belonged anywhere. I was me, but I wasn’t. I really just wanted to run, anywhere. I wanted to keep moving. Time should’ve stopped the moment I lost my son, but it didn’t. I just kept getting knocked around by it.

What helps you in your grief now?

Remembering the kind hearted boy that William was. He was always putting people before himself and he lived each day with a positive attitude and a smile on his face. Even on his really difficult days. So I honor him by doing my best to live the same.

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

We have four girls that were ages 16, 15, 14 and 5 at the time of William’s death. Of course this was not easy for them, but we thought we did what we could to help them and thought they were handling it as well as could be expected. It wasn’t until over a year later that we realized one of our daughter’s wasn’t handling it nearly as well as what we thought she was. She was suffering from a deep depression that she hid well. I just wish there was more support for siblings that have lost a brother or sister, and more education for bereaved parents as to what to look for.

What made your child with cancer unique?

His love and skill for fishing that was years ahead of his time. His quiet way and humble spirit. He drew people in with his smile and melted their hearts with his loving personality. He always put others before him, always had a smile on his face and always was the first to jump in and help a friend out when they needed him.

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

William loved his German Shepherd Berkley, ice hockey and sprint car racing. But his true love was fishing. William lived to fish. My husband would have to keep fishing rods in the vehicle because any time William would be discharged from the hospital, they would go straight to some water to fish. William had a skill about him, way beyond his years, and was actually invited to help on a fishing boat over the summer once he turned 16 because he impressed the captain so much.

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

It touches every aspect of your life. Things that you wouldn’t even expect it to. It takes an immense toll on the entire family, whether you see it or not. To have to watch your child suffer and not be able to fix it is a pain that no parent should ever have to experience. And the pain and suffering that the child has to endure is beyond comprehension.

How did you find out about Rett’s Roost?

Another bereaved family that we met told us.

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

I think it’s the memories that were made. The fact that the entire family gets to attend is so special. It is such an amazing time with amazing people that truly understand like no other. From the places we go, to the things we get to do, and the crafts we get to make, all while being surrounded by other bereaved parents. It’s a time spent like no other.

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

Catch A Dream Foundation, NEGU, Jeff Musser Foundation, Camp Nate, Young Life

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 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.