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Our Families

Alister’s Family

I met Amber and Eli at one of our Grief is Love online retreats for parents during the pandemic where I first heard of Alister, their youngest child. Alister was born with a rare & complex genetic disorder called Alagille Syndrome, which affected his liver and heart. Over the first 2 years of his life, they navigated the difficulties of having a medically complex child. Although he had many doctors’ visits and a long list of life-long medication, luckily, Alister’s life was not at risk. His older siblings adored him and the family felt complete.

Out of nowhere, on July 8, 2019, Alister was diagnosed with acute lymphoblastic leukemia. It was not tied to his genetic disorder but his already fragile health made it very hard for him to handle the harsh chemotherapy treatments. Alister was able to get into remission, but sadly died of septic shock due of a fungal infection 7 months and 3 weeks into his treatment in March of 2020, right at the start of the pandemic.

The family arrived at our retreat hoping to ease their sorrow by meeting others. It was a little harder for the teen siblings, but Abigail (age 6), the youngest of the three, was spunky and warm and clearly excited to be on a trip away from quarantine life. On the second day, Abigail, happily playing with the other kids her age, fell awkwardly and broke her arm, badly. Eli took her to the local hospital where they learned that the humerus was completely severed and Abigail would require immediate surgery at Boston Children’s Hospital.

After years of dealing with hospitals and emergencies, how could this happen on the one weekend where they were trying to focus on healing? Amber, Felix, and Ashleigh stayed at the retreat (since only one parent could go with Abigail anyway). The mood at the retreat became somber, but also supportive. As Amber told us on the last day, “They were with the best people to have something bad like this happen. Because we all know the triggers to this kind of trauma.”

Eli returned at dinner on Saturday with Abigail, to a table-full of unicorns and balloons. All the other kids came up to her and signed her cast and it really was a special reunion that brought us all closer. They somehow had the energy to come down to the bonfire, and in our closing circle the following morning, I gave gratitude for their grace and grit. I was amazed with how the entire family handled the very unfortunate situation. And I was reminded of how bad luck seems to follow families around for a while after the death of a child. That is why we offer the support that we do. Our programs are truly needed and appreciated by these star-crossed families.

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