Helping kids live with a parent’s cancer

One of the hardest thing I had to do when I was diagnosed with cancer was to break the news to my children. Not only had my life been turned upside down, but I knew that theirs was about to change forever, that their childhood would never be the same and that this cancer would undoubtedly leave some scars. It is our role as parents to protect our children and offer them the best life possible and my ability to do this had been seriously compromised. I was facing intense treatments and a grim prognosis. It was so hard to keep it together but I knew that the stronger I stayed, the better it would be for them. As much as we focused on “fighting cancer” and the fact that I was responding so well to treatment, I knew that the thought that they could lose their mom was not too far in the back of their minds, a fact that is still heartbreaking to think about.

We don’t talk about cancer on a daily basis. It comes up here and there, sometimes when we hear something about cancer or randomly as the kids are playing. I try to always leave the door open for them to talk about it if they want and always use my best judgment to give them age appropriate information. I know my cancer has affected them and my children have both reacted to my diagnosis very differently. One retreating to his books and video games and the other one by constantly needing attention. Of course my number one priority has always been to fight and heal but close second has been to make sure they wouldn’t suffer too much. My kids have been my greatest source of motivation and inspiration.

A fellow fighter told me about a camp for children who have (or have had) a parent affected by cancer. I immediately registered my boys and “liked” their Facebook page. Camp Kesem is an national organization that holds free camps for children throughout the US. I love how they describe the camp as “a place for kids to be kids, free of the demands of cancer”. Kesem means magic in hebrew. It represents the ability to change a life and an agent of growth. The camp’s logo is a caterpillar which illustrates the process of growth and transformation that children go through while attending camp. A few months before camp, it came to my attention that a mental health professional was still needed for the camp. As a psychologist, this is something I thought I could probably do and so I contacted the leader and told her to keep me as their “fall back option”, to keep looking and get back with me if they couldn’t find anyone else to fill the position. Well I was not given the chance to back out and “Bean” the student leader, just responded that she was excited to welcome me to the family! My main concern was that I did not want to take anything away from my own kids’ experience, they were going to camp with the intention of getting away from their mom’s cancer and here I would show up at camp with them. I asked Bean what she thought and she assured me that me being at camp wouldn’t take anything away from them. We agreed that I would talk to my children and see what they thought. They were both very enthusiastic about the idea and so I agreed to commit. Part of me was nervous about committing to something a few months in advance. I am still feeling shaky about my health and never know what to expect from one scan to another and I knew that backing out at the last minute could put the camp in jeopardy. Having a mental health professional on site is a requirement. I crossed my fingers, signed up and the kids and I excitedly prepared for camp.

I feel so fortunate that I got to experience camp Kesem. I actually got to experience it from a very unique perspective, as a professional, as a mom, and as a cancer fighter. My role was not to do therapy with the children but rather to help the counselors address issues that arose. What I witnessed there is beyond words and this why it has taken me so long to write about my experience. I just couldn’t find the words that would adequately describe what camp Kesem truly represents. I have been extremely impressed with every part of it.

I must admit I was a little worried when I heard that typically 1/3 of the campers had a parent in treatment, 1/3 a parent in remission, and 1/3 a parent who had passed from cancer. I wasn’t sure how I felt about the idea that my kids would hear stories about moms (and dads) who had died from this disease. It is not something we have really discussed with them. I know they know that it’s a possibility but we always focus on the positives, on all the people we know who beat their cancers and how well I have been responding to treatment. They certainly heard those stories at camp and I know it had a big impact on them as they still bring it up from time to time. However, there was a powerful positive outcome that came out of this. They saw with their own eyes how those kids who had lost a parent where “normal” kids, they saw these kids get sad when they talked about it but they saw them play, have fun, and enjoy camp like all the other kids. They learned a tough but very important lesson, that life goes on, that one survives losing their parent, that life can still be fun and full of beautiful moments and experiences.

The camp we attended was organized entirely by University of Florida students. From what I can tell, all the counselors were carefully selected. You could tell that every single one of them truly wanted to be there. They all spent a whole year fundraising to make the camp free for the kids and they were all doing this voluntarily. That in itself is incredible, we are talking about college students, giving up a precious week of their summer to be there for those kids. Many of the counselors had their own history with cancer and could truly relate to what the children were going through. Every counselor at camp was determined to make this week be the best week of these kids’ year. They were always pepped up, enthusiastic, motivating, and so incredibly encouraging and compassionate. Those counselors were all so caring and so invested in making camp a magical experience for the kids. You could tell that they really wanted to impact these children’s lives.

At camp, every one, campers, counselors, and professional staff has to come up with a “camp name”. This is a chance for the kids to create their own identity for the week, to adopt a new personality if they wish, to be who they truly want to be. We had a lot of superheroes, fun foods, and endearing names. I truly think that this made every child feel free and special. There is something very unique for the kids in being surrounded with other children who share and really understand the challenges, fears, and emotions that they are facing. I witnessed kids going from being very withdrawn and sad looking to beaming with happiness in their eyes. I looked at teenagers showing up on the first day of camp thinking they would never make it through the week to hugging their new found friends
with tears in their eyes promising each other to stay in touch until next year’s camp. I saw a counselor wipe tears off his cheeks when a returning camper told him he considered him as “a big brother”. The bonds that formed between the campers and even between the campers and the counselors were so profound and based on a deep understanding of each other. Camp Kesem was truly magic and I did see campers transformed at the end of the week.

I have heard other survivors say they were grateful for their cancer because it taught them something about life or made them realize something about their life that they would have otherwise never realized. I am not there yet and don’t know if I will ever be grateful for having had this awful disease. One thing for sure though is that I would have never experienced camp Kesem without this diagnosis and it truly opened up my eyes to the beauty of human connections and relationships even in kids…..

Camp Kesem is now our family away from family, I can only hope to be healthy enough to be part of this magical week next summer….

Lululemon love to all xox

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