Reflections on the Living LFS Family Camp

They say, “Time flies when you are having fun.”  Well, time definitely flew and we definitely had fun at camp!  But we also were educated, inspired, and comforted during the last few days.  Now that we are home, I had a few minutes to reflect on the amazing experience our family just had and so here are some of the moments I want to remember. 

The first day started off with a yummy breakfast and listening to Dr. Maese of Huntsman Cancer Institute.  He, along with others, are conducting a study in hopes of developing a blood test that would detect cancer.  Their hopes are that when this is developed, it could be made available to all and could replace or be used alongside the whole body MRIs.  Though this study is years away from developing a blood test, those with LFS were able to join the study and help the research. It was super exciting to hear what these doctors and their teams are working on.  And I was proud of my kids for giving their blood “FOR SCIENCE!”

After we listened to Dr. Maese, it was time for break out sessions.  My family chose to go to the Intro to Genetics class. In this class, we learned the basics of genes, what it means to have a mutation, and how that affects our bodies.  The kids favorite part was building the DNA strands with connecting blocks. We even mutated our DNA strands. It was an interesting and engaging workshop.  

After lunch we headed off to the zipline.  I am terrified of heights, so as I stood strapped up to the zipline, I thought, “What am I doing here?”  But my eight year old wanted to do it together, so there I was, jumping off a high platform, hoping not to die.  The hardest part was taking the first step. We counted down, and then we just jumped off and I screamed like a crazy person.  After the initial panic, the thrill set in and it was really fun. As I sat there waiting for my other family members to take their turn, I thought about how this zipline was a lot like life.  Sometimes taking the first step is the hardest part and fear might stop us from taking that step. But if we take it, great things often follow. I am glad we got to do the zipline because it was empowering. 

Next, my husband and I went to the Parenting with LFS session.  We as a group all sat on comfy chairs in a circle and shared some of our fears, our concerns, our struggles of parenting children that do and don’t have LFS.  I thought it was interesting that all these people were strangers to me until only the day before. We were from all over the country and have different beliefs and experiences.  Yet, as parents we were so similar in our thoughts. We were worried about the same things. We felt similar guilt. We shared our desires of wanting our children to be happy, to adjust well to their diagnosis, and to grow to be healthy, happy, successful adults.  I was so comforted to find others who were so much like me. It made me feel like I am not alone on this journey of parenting three children with LFS. The best thing I took away from this session was to have many open conversations with our children. It seems that keeping communication open helps the child adjust well to all the ups and downs LFS brings.  It was a great session and left me wishing that this type of a support group could happen on a regular basis because it was so helpful. 

That evening we bundled up and gathered around the campfire.  Two musicians led us in a singalong. It was such a great experience to have us all gathered together, singing together, enjoying the beautiful cold night in Montana.  One of the songs we sang was Let It Be by the Beatles. I recently heard on TV where Paul Mccartney shared how he came up with that song. His mother had passed away from cancer when he was only 14.  During a particular hard time in his life, his mother Mary came to him in a dream and told him to “let it be.” He awoke and wrote this song. I loved thinking of that story as we sat around the campfire.  A lot of us have been through some really hard things and we have a lot of fears for the future. Sometimes we just have to “let it be”, trust that everything will be ok, and be grateful that we have a lot of people who will help us get through the hard times.  I was sad when the musicians played their last song but I felt unified by us all singing together.  

The next day we did break out sessions again.  I went to the Nutrition class. I came away with new goals from what I learned in this class.  We need to move more and sit less. We should focus on eating whole foods, and our diet should be strongly plant based.  We also were encouraged to start making small changes in our habits. Small changes over time will lead to big changes in the end.  It was an informative class that ended with some yummy protein balls. 

During free time we really took advantage of all that was offered at this camp.  The kids played miniature golf. We did archery. The art barn was so fun and the kids made cute elephant crafts, dream catchers, and super hero capes.  The game room was always hopping with kids and my husband made some friends while putting a puzzle together. We also went on a hike behind the camp. It was so beautiful, a little slippery, and stretching for those afraid of falling.  But the sense of accomplishment at the top was worth the effort. This all together made for a really fun camp. 

The last session I went to was the Coping with a LFS Diagnosis.  This class was so great. I felt like the veterans of LFS and the cancer survivors had so much wisdom to share and were very inspiring.  I gained a lot from this class. For example, family counseling is a great way to help the family learn to cope with an LFS diagnosis and to work as a team to get through difficult things.  Also, family counseling might be a great way to get a reluctant person to start counseling. Also, we need to seek joy and to discard negative things from our lives. This session inspired me to have a good conversation with my family as we drove home.  We reviewed what LFS even meant and what questions they have about LFS. We also talked about what fears and concerns they have. Sometimes we need to be given the tools to know how to cope with hard things and how to help others know how to deal with hard things.  This session gave me those tools.  

We ended the camp with a talent show.  It was awesome to celebrate these amazing people.  Some people sang. A few played the piano. We had an awesome break dancer.  It was a fun way to end the camp. As we left that night, we walked down a path lit up by luminarias.  These bags represented those we had lost to cancer. My sweet sister-in-law’s name was on one of the bags.  We quietly walked down this lighted path, paying our respect to those lost. One thing I saw at this camp was how everyone had lost someone to cancer.  It was heartbreaking to see all this grief but it was also comforting to be around people who understand the grief. And those who are lost definitely live on in our memories.

  

It was hard to say goodbye at the end of camp.  My children made friends that they might not see for a long time and that was hard for them.  I had made friends with people that I didn’t want to say goodbye to. But the thing that was the hardest to leave was the feeling of camp.  I didn’t want to leave the feeling of belonging, the feeling of understanding. As we walked to our van to head home, my husband looked at me and said, “We will definitely be at the next camp.”  I agree! So Living LFS Family Camp, I say, “Until next time…”  

Living Li-Fraumeni Syndrome Family Camp Day One

After driving seven hours through a mostly empty land, we drove into the parking lot ready to be free of our vehicular prison.  As we pulled up, we saw a man and woman bringing in their luggage. They both gave us a very friendly wave with big smiles on their faces.  We had never met these people before and yet they greeted us as if we were old friends. Why would complete strangers be so happy to see us?  Because we share a common path.  

When my husband and mother-in-law were both diagnosed with brain tumors only weeks apart, I felt like our family was unique in our trials.  Cancer seemed to be picking on our family. But after our LFS diagnosis, we learned that we had actually joined a club of people where cancer is intertwined with the club members’ lives.  It is a club you wouldn’t want to join, but once you are in it, you are happy to find others that know how you feel.

As we entered the lodge to sign in, I was greeted with a big hug from a Facebook friend.  It was so fun to finally meet in person. Then we were off to find our cabin. We politely met our cabin mates and chose our bunks.  Then it was off to dinner. As we ate, we made introductions to others and learned a few names. As I sat eating my meal, I looked around at these new faces and wondered their journey.  When meeting someone new, I didn’t want to say, “Nice to meet you. Do you have LFS? Do you have cancer?” Not sure the protocol of finding out people’s history, so instead, there were the formal introductions of, “Where are you from?  Who are you here with?” But I wanted to know so much more.

After dinner, we headed back to our cabin.  A new family had showed up to our cabin so again we made the formal introductions and made polite conversation.  After a little while, one person said, “So who has LFS in your family.” I thought, “Finally, let’s talk!” So us three couples sat and shared our stories as the children ran around the cabin and played.  We talked of the cancers each family had experienced, when everyone was diagnosed, and what their experiences have been with screenings.  

After staying up too late visiting, we finally climbed up into our comfortable bunk beds and turned out the light.  I went to bed feeling so happy. I felt like we had just made friendships that were not on the surface, not superficial, but that were deep, connected.  Why? Because we understood each other. We could talk freely about family members lost. We could talk freely about fears and frustrations. We had found a group who understood us and that opens the doors to friendship and connection.  I went to bed looking forward to who I would met the next day. My goal is to meet every person here. I hope to reach that goal because these are amazing people with amazing stories.