Meet our 2023 HorizonWALKS Camper Ambassadors: Siggy & Freya!
Team Name: Siggy Strong
Here is the story as told by their mother, Samantha
Just before Siggy’s second birthday we noticed some slight swelling in her left eyelid, so we quickly brought it up to the pediatrician. At first, she thought it might be an infection so Siggy was put on antibiotics, but her eye continued to swell. About two weeks later just after Christmas 2019 we got an appointment for a CT scan to see what was going on inside the orbit. About a week later we got a call that no parent every wants to receive. The pediatrician shared with us that there was a mass of some kind behind Siggy’s eye, and the doctor recommended that we see an oncologist. We were quickly filled with an array of emotions – fear, anxiety, and worry to name a few. We went to Johns Hopkins, and they were fairly sure it was going to be Rhabdomyosarcoma since Siggy had a textbook optimal presentation. By mid-January 2020 we had the official diagnosis of Embryonal Rhabdomyosarcoma with optimal outcome. Siggy began treatment that day with a VAC Chemotherapy plan, which included 12 weeks chemotherapy followed by five weeks of daily Proton radiation along with another four months of chemotherapy. Compounding our fears and anxieties, the Covid 19 pandemic added various layers of isolation, caution, and challenges.
Siggy was in remission by June 2020. However, her first follow up scan in October, 2020 showed that the cancer was back, so she went back into treatment in November – this time with daily chemotherapy on a clinical trial for four months followed by the removal of her left eye, eyelid, and all tissue inside. Also necessary was three days of Bracchytherapy (radioactive isotopes directly on the site of the tumor), which was conducted at Memorial Sloan Kettering in New York. After a month of healing, she began the second half of her chemotherapy regimen which required another six months of daily chemotherapy on the clinical trial, which she finished in late August, 2022. These days were especially hard because Siggy and I had to be separated from her sister, Freya, and her dad for much of the time since only one parent was allowed to be with Siggy at once, and siblings were not permitted at all due to the Covid 19 restrictions.
Siggy is now in remission. She has had clean scans for her follow-up visits over the past year, and we pray they continue to be clean. Siggy, now age 4, has been dealing with cancer and all of the challenges that go with it for more than half of her life, and the experience has also been very challenging for her sister Freya, now age 7. Freya was always worried about her little sister, but at such a young age she too had to deal with all of the burdens and fears that go with a childhood cancer diagnosis within the family. Often, as parents, we were so consumed with Siggy’s condition that we were concerned about the implications Siggy’s cancer would have on Freya. Understandably so, we were worried about both of our kids, and we just wanted them to be safe, be together, and just have normal childhoods.
This is where Horizon Day Camp comes in. Horizon Day Camp is a camp for children with cancer AND their siblings! It is a place that is not only FREE for families, but it is a safe-haven with doctors and nurses and “best practices” in place to ensure a safe environment for all of the children. Most importantly, Horizon Day Camp is a place where kids can be kids with no judgement. They don’t talk about cancer at Horizon, but it’s a shared bond that connects all of the children. Siggy and Freya have attended the summer day camp together each of the past two summers when their schedules allowed them to go. They have both made friends at camp; they have increased their confidence and independence; and they have been able to do all of the things that kids are supposed to do from enjoying art projects, swimming in the pool, eating ice-cream, and so much more! It was a blessing to have the staff at horizon day camp because they were already familiar with anything siggy might need or feel and they were as aware of the warning signs as I am. This staff allowed me to feel comfortable letting my girls go by themselves all day and I knew they were safe - this was huge for them.
Siggy especially enjoys the art and singing at camp. She is frequently running around the house singing ha ha horizon roll call, and Freya loves the art and pool days, she has come home.with some amazing creations from kolidoscopes to drums. As parents, we could not be more grateful that Horizon Day Camp exists. The girls are happy and thriving in many ways, and that makes us so happy as parents. We don’t know what the future holds, but we do know that Horizon Day Camp is a family we have joined, and it’s a camp community that gives us all strength and happiness as we go through this journey. As such, the girls are thrilled to be Camper Ambassadors for HorizonWALKS 2023!
MEET OUR PREVIOUS HorizonWALKS AMBASSADORS!
Meet our Previous Camper Ambassadors: Flynn, Bennett, & Nellie!
These twin brothers and younger sister have been through so much, and it's been an absolute joy and privilege to provide them a FUN, safe place to make wonderful memories together!
Here is their story, as told by their mother, Lindsey:
I am Lindsey. Twin mom, nurse, and now—a medical mom-a cancer mom.
I made a career of being a caregiver as a nurse. I was confident in my knowledge and skills and often sacrificed time with my family to be there for other families. I felt I was prepared for anything until my family experienced a crisis of our own and I received the phone call to pack a bag and take my son to Sinai. As I collapsed to the ground, I knew in my heart that we would not be receiving good news when we arrived. When Flynn was admitted to the hospital for leukemia, I went through a whirlwind of emotions. I kept thinking how do I explain this to a 4 year old, what do I tell Bennett and their sister Nellie? Flynn LOVES his friends and family and LOVES being a kid. He spent that first week in the hospital feeling very sad, scared, and defeated. He missed his friends and family so much. He had never spent this much time away from his twin, Bennett.
When he got home, we adjusted to a new normal of frequent hospital visits for chemotherapy, blood, and platelet transfusions, unplanned hospital admissions, missed vacations, Flynn leaving school, and I had to stop working and stop going to school to be a Nurse Practitioner…all while during a pandemic. This meant during hospital admissions, only one parent could be with Flynn, my husband had to permanently work from home, and there were no visitors allowed in the hospital.
We began to see the light at the end of the tunnel with Flynn as we headed out of the chaos and into the maintenance phase that would last from August 2021 to February 2023. Then, the unthinkable happened. Something that had a less than 1% chance of happening. On August 2nd, 2021, my husband noticed Bennett’s gums bleeding. My stomach dropped as I used my own skills to give him an informal exam and found symptoms consistent with leukemia. He went to see Flynn’s doctors Monday morning and I found myself in the exact same position as 9 months earlier. We were being told that now Bennett has leukemia too.
Both of our sons had cancer.
I thought I’d felt all the hits that I could, but here we were; how could this be possible. We were about to feel normal and now we were starting all over, but with another child. We questioned so much… Why? How? Were the boys somehow identical, because that could explain it? What about our daughter? How do we protect her?
During the summer of 2021, as Flynn neared the end of active treatment and into maintenance, he was able to finally become a kid again and go to Horizon Day Camp. This was the opportunity we had been waiting for-Flynn, Bennett, and Nellie to be back together again every day having fun and being kids. Horizon Day Camp gave us this opportunity! When Bennett was diagnosed in August, we had to pull Flynn and Nellie out of camp abruptly, and they were all very upset. I remember receiving emails sending good thoughts from Horizon administrators and offering to help however they could. Horizon continued being there for us through sending gifts, providing opportunities for us to come together and support all kids with cancer. Through all the challenges, Horizon Day Camp has been a place that provided some comfort and normalcy amid a situation that was otherwise far from normal.
Today as I sit here to write this, Bennett is currently doing great, and is beginning the phase of treatment right before maintenance. Flynn has been going through maintenance since August. We had Flynn undergo his lumbar puncture for day 1 maintenance the same day Bennett was undergoing a bone marrow biopsy. It was probably the number 1 worst day of my life. Finally, after some bumps along the way, Flynn’s maintenance is steadily moving along as expected. Flynn, Bennett, and Nellie recently enjoyed a drive-in movie night hosted by Horizon, which was such a fun event coming off some pretty rocky weeks. They are already singing “Horizon Day camp, it’s the best camp” as they get excited for their second summer at Horizon. My husband and I are really looking forward to seeing the three of them be kids and enjoy everything horizon day camp has to offer- making new friends, having new experiences, swimming, eating ice cream, singing/dancing/crafting, attending carnivals, playing on inflatable slides, and more surprise days!
I don’t know what the future holds for our family, and I have learned that the most important thing is the here and now. But I do know that no matter what we will continue to endure, the support we have around us will keep us going. Horizon Day Camp is a family that we have joined, and they have become an essential piece of “Flynn’s Army” and “Bennett’s Brigade.”
Join Flynn, Bennett, and Nellie at HorizonWALKS this year! In 2020, they won for the Most Spirited Ravens costume contest!
It's easy to see why!
Meet Evy, one of our wonderful HorizonWALKS Camper Ambassadors!
HorizonWALKS Team: "Beez Knees!"
We are excited to have the spunky Evy represent Horizon as one of our HorizonWALKS Camper Ambassadors! Evy is a Horizon Day Camp veteran than brings all of her energy, sunshine, laughs, and heart to everyone she meets. We love having Evy as a part of our Horizon family!
Evy’s mother, Mandy shares her compelling story with us:
“After weeks of trying to find the answers to what was happening to my baby girl, I finally learned what was going on inside her little body. She was diagnosed with Pre B Cell Acute Lymphoblastic Leukemia. I’ll never forget that moment. Her pediatrician was kind enough to drag me into the hallway, away from Evy, so I could take a moment to fall apart. Then it was time to go home, pack a bag, and head to [Johns] Hopkins. Every day after, has been a riptide of changes. Treatments, fear, needles, procedures, tears, bravery, and emotions. Evy is the toughest person I know. On her first procedure, she was asked if she wanted a wheelchair to take her into surgery. Her response was “Nope! I wanna walk.” She picked up her teddy bear, and off she went. Head strong and bullet proof! I truly admire my daughter.
I’ve always told Evy the truth about her condition and involved her in every aspect of her treatment. So much had been taken from her so quickly. I wanted her to have the power of choice during this time of her life. She is a smart kid and deserved at least that. She suffered through so much pain during her treatment and wanted to give up so many times. She’d really just had enough.
One day, while in clinic, Evy was approached by one of the nicest people we’d ever met. Her name was Fran, and she wore a Horizon T-shirt. She pulled out a trunk full of toys and asked Evy if she wanted to play. Then Fran gave me a wink and told me it was okay if I wanted to go get a cup of coffee. The rest is history. Fran and everyone in the Horizon/Sunrise group has become a part of our family. I feel they do the most important job of all: help a child smile. I’ve watched the staff of Horizon Day Camp, completely transform a child’s day into pure wonder and joy. They know exactly how to be a friend. Evy has made friends with so many members on the Horizon Staff. Some even just call to say “Hi”. If that isn’t amazing, I really don’t know what is.
It’s tough sending your kid to camp, when they are so vulnerable. But if ever there where a place for these babies to grow, and develop while being cared for by truly selfless people, I’d say Horizon is that place. Evy would always come home with a story about swimming or crafts. She would tell me if she felt ill that day and how the nurses really took care of her. They would always call when Evy really didn’t feel well. That point was very reassuring. It’s easy to support Horizon. From day one, without question, they have always supported our family and countless others.”
During virtual camp this summer, Evy had a blast reconnecting with her camp friends, making crafts, and being silly with her mom! We can’t wait to celebrate Evy and her family at HorizonWALKS this year! Evy has previously attended HorizonWALKS for the past two years with her mother, and she loved the moon bounce and carnival snacks – like popcorn and cotton candy! This year, she hopes to meet a famous person.
Join Evy and Mandy with Team Beez Knees this year with HorizonWALKS!
Meet Oliver & Eli, two of our awesome HorizonWALKS Camper Ambassadors!
HorizonWALKS Team: "Team Super Oliver!"
Two of our Horizon Day Camp campers, brothers Oliver and Eli, are spending their second summer at camp with Horizon. These boys have brought joy and sunshine to our camp since day one! They also have a special relationship with the Founder of Race Pace Bicycles, Alex Obriecht – they call him "Pawpaw"! We are proud to partner with our friends at Race Pace Bicycles for HorizonWALKS 2020 - thank you for your support!
Parents of Oliver and Eli, David and Christa Binns recently shared their story:
In the fall of 2018, our youngest son, Oliver was diagnosed with cancer. While in treatment at Sinai Hospital, we met a volunteer with Horizon Day Camp’s in-hospital program, Horizon on Wheels, and my heart jumped after learning about Horizon’s free summer day camp for children with cancer and their siblings.
The first day, Oliver and his brother, Eli were met by enthusiastic and friendly counselors. In fact, every day was a celebration and "The Best Day Ever!" Horizon Day Camp helped our young sons gain independence and make new friends. The days were packed with fun, yet comforting for them to be home each night and sleep in their own beds.
Oliver grew more independent during the seven weeks of camp. He loved riding to Boys Latin School from our home in Westminster on one of Horizon’s buses and became close with an older camper who supported him in a way that only another child with cancer could. Horizon’s trained counselors helped big brother Eli become more confident and make new friends along the way. This camp is a gift to the entire family while allowing us to have time as a couple and even share a lunch date!
Most importantly, our sons now have incredible shared summer camp memories to last a lifetime. This summer, Horizon is there for us again, offering eight weeks of virtual camp with fun, exciting live and prerecorded sessions for the boys to enjoy. I know Horizon Day Camp will be part of our lives for years to come.
Horizon Day Camp is grateful to Christa and David Binns and the entire Race Pace Bicycles Family! Walk with Oliver, Eli, and the Race Pace Bicycles family at HorizonWALKS this fall!
Meet Brooklynn “Brookie”, one of our amazing HorizonWALKS Camper Ambassadors!
HorizonWALKS Team: "Brookie's Cookies"
The Horizon Day Camp community has had the privilege of spending summers with the affable, spunky Brookie since 2017. Her energy abounds, and her smile lights up the whole camp! Some of her favorite camp experiences, according to Brookie, include getting to swim every day, playing in the gym, hanging out with her best friend Batya, and seeing her friends from the hospital at camp. Her mother, Brittany, reflects fondly too about what Horizon Day Camp means for their family:
"Brookie got sick during her first summer at Horizon, and she was hospitalized for a month. To our delight, Horizon staff showed up at the hospital room. I was in shock and awe. This happened very early on in the camp; I didn’t even think they would realize she was gone. They did. They just came by to check on us and give Brookie some comfort gifts from her Horizon family. When they left the hospital room, I knew this organization was something special!"
Under the caring hands of Dr. Yoram Unguru - who is also Horizon Day Camp’s Medical Director – Brookie received intensive care and treatment at The Herman & Walter Samuelson Children’s Hospital at Sinai for her leukemia diagnosis. Doctor Unguru remembers the first time he met Brookie and her family:
“It was arguably was one of the worst days of their lives. It was clear that Brooklynn was not at her best - quite sick and not feeling well. As a result of the large tumor burden, Brooklynn’s belly was swollen, her chest was occupied by a massive collection of tumor cells, and her bone marrow was so full of cancer cells that she limped and could not walk very far. While I examined Brooklynn, she allowed me to push and prod and appropriately resisted. Not so much frustrated with my exam, I got the sense that this spunky 3-year-old wanted to regain a sense of control and understanding for what was amiss. Over the course of the next few days, as she began to feel better, Brooklynn’s true character emerged."
"Simply put, Brooklynn has moxie. She is strong-willed, funny, and like so many kids with cancer, wise beyond her years. On days that Brooklynn came to the clinic or was hospitalized, nurses and residents jockeyed to be assigned to her care. You see, Brooklynn didn’t let a life-threatening, frightening disease like cancer conquer her will nor her spirits. I couldn’t be happier that Horizon is able to give Brooklynn, and so many kids like her, a piece of their childhood back and a semblance of normalcy for her and her family.”
In the most wonderful news, Brookie recently was able to victoriously “ring the bell” at Sinai, signifying her last chemotherapy treatment! Hooray for Brookie! We couldn’t be happier about your perseverance and clean bill of health!
Brookie is so excited for HorizonWALKS 2020, and she invites you to walk with her! According to Brookie, she can’t wait to see the Baltimore Blast Cheerleaders, play with the cheer pom poms, and walk with the amazing, upbeat marching band's drum line again! Brookie - thank you for bringing all the sunshine you do to camp and everyone you meet! Thank you for being a HorizonWALKS Ambassador!