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.  

What I Learned from my Husband's Cancer

First off, Jaron is doing really great.  He is strong and healthy.  He works full time and spends time in the garden.  All of his scans have come back clean.  We couldn't be happier with how great he is doing.

We are coming upon the two year anniversary of the summer from H-E-Double Hockey Sticks!  Life is going really good right now and I feel like we have been given time to breath.  As we breath and take a break from the really hard, I have been looking back on our experience and thinking about our journey.  First, I am amazed we survived.  That was really HARD!  Second, I hope we don't have to go back there again any time soon!  And last, I feel like I really learned a lot from that journey!  I probably could write a book (and lots of people have) because it was such a journey of being stretched and of growth. I recently heard my brother say this quote, "Writing makes an exact man."  I liked that.  I feel that I need to put on to paper some of the lessons I learned so I don't forget them.  They were hard earned lessons and I want them to stick!

The first lesson I learned was to turn to God and ask Him to walk with me in this life.  During a really  hard time, I was struggling with all that was expected of me.  I was being weighed down with taking care of the family alone, being Jaron's full-time nurse, caring for the home and yard, feeding the animals, etc.  It was hard and I was struggling.  So I decided to go to a caregivers support group at the Huntsman Cancer Inst.  This was a really good experience and I am glad I went. It was good to be among others who were dealing with similar problems and who could be very sympathetic.  But one thing stood out the most to me.  There were four people there and we were all dealing with a similar trial.  All of us had a spouse dealing with cancer and who would probably die from cancer.  But as we went around the circle and shared our trials, I realized I was doing a lot better than everyone else.  This was not because I am better than the others.  It was because I had God in my life.  By the way they talked, I could tell they were walking this journey alone.  I wanted to stand up and say, "Life would be so much better if you would turn to God."  It wouldn't have been appropriate, so I didn't.  But I wish I could have.  I have gained such a strong understanding that God will help carry our burdens.  He will give us strength to make it through.  He will be by our side during the dark nights.  All we have to do is turn to Him, to fall on our knees and pour out our heart and He will be there.  I know that I have survived all we have gone through not by my own strength but because I had God helping me.  I will never try to walk this life alone.  It is too hard and I am not strong enough.  But with God, all things are possible.

Another lesson I learned was to try and see the good and to be grateful.  This was hard when it seemed like life kept pushing us down.  There kept being bad news after bad news.  But when we were really feeling down, we would stop and name things that were good in our life.  It really did bring light and lift us up when we did this.  I remember one particularly hard day.  I was feeling low from all the bad that was happening.  I felt like we were being picked on and I was tired of it.  I happened upon a talk given by Susan Easton Black at a BYU Women's Conference.  In the talk, she told about when Joseph Smith was jailed in the Liberty Jail.  The conditions he was living in were terrible and all of his family and the members of the church were really suffering as they were being kicked out of their homes.  He was feeling very down on himself and he prayed to God saying something like "Where are you?"  God answered him and one of the things He said to Joseph Smith is that Joseph's trials weren't as bad as Job's because Joseph still had his friends by his side.  Susan Easton Black went on to stay that all the difficult things that Joseph Smith had to endure, he could be grateful that he still had friends by his side through it all.  When I heard this, I stopped what I was doing and was filled with gratitude-gratitude for all of our friends that were by our side.  All of the kindness that has been shown us, all of the service that we received, all of the prayers said in our behalf, all of the gifts and goodies left at our doorstep, all of the babysitting and help with my children-my heart was so filled with gratitude for it all.  Though our trials were big, that did not compare to the goodness we received from our friends.  I felt such gratitude at that moment and I still feel that gratitude.  I also felt so much lighter after that experience.  I attribute that to stopping and being grateful.  Often when I would hear my kids listing all the bad things happening in our lives, I would acknowledge that it was bad and there was a lot of hard things.  Then I would ask them if they saw any good things happening.  They would then start listing them and the bad list seemed to disappear.  It really did help. Gratitude is the key to peace and happiness.  I truly believe this.

My next lesson piggybacks on the one I just said.  Though it is so helpful to be grateful and to see the good, it is ok to be sad and to be having a hard time.  Sometimes we try to jump straight from bad news to being grateful.  I think it is more helpful to spend some time grieving the bad news or the hard experience.  After something bad would happen to us or some news was given to us, I would cry and then I would spend a couple of days going over the bad news and feeling sad or angry or upset about it.  Then, after I had given my grief enough time, I would turn to the gratitude and seeing the good.  I would pick myself up and get back to work.  Because I allowed myself the time to be sad I was able to return to a good place once again.  Often when someone we love has something bad happen, we want to hurry them through the sad because we don't like to see them suffer.  But sometimes it is very healthy to cry it out, pull the covers over our heads, and grieve.  So sit with a loved one when something bad happens and tell them it is ok to be sad, upset, angry, disappointed, etc.  Because "FEELING IS HEALING."

Another lesson I learned is that we don't need to go through these trials alone.  We can and should seek outside help.  Jaron and I received counseling alone and together.  One of my children who was really struggling also went to a counselor.  Some of us have had anxiety our whole life and with these added trials, it was at a very high level.  We sought medical help and received some life saving medication.  I think we as humans like to think we are strong enough to do it on our own, but I think it actually shows a lot of strength to say, "I need help."  I am such a believer in counseling and medicine.  I feel like both are gifts from God to help me and others succeed in this life.  I am very grateful these resources were available to us so we could receive the help we needed through a very difficult time in our life.

Like I said, I could write a book about all I have learned but I will share one last lesson.  I might have shared this on this blog before but it was such a powerful moment for me that I want to share it again.  The lesson is that God is aware of us and knows what we need.  He will often send others to fill those needs.  I remember coming home from church one Sunday feeling very low.  Jaron was sick in bed.  I had once again taken myself and my children to church alone.  I had taught the music time with the children at church, which was always a lot of work.  I came home knowing I would need to care for Jaron and take care of the kids.  I was worn out and feeling overwhelmed.  I hated that we had animals to feed and a large yard to care for.  My house seemed like this big monster that I couldn't keep up with cleaning.  I finally decided that we would need to sell everything and move to an apartment because my work load was too much.  That day I was feeling really low.  Then, I got a knock on my door.  It was one of our neighbors.  He said that he had some extra time and didn't like being bored so would it be ok if he helped out in our yard.  I told him it was ok, that we were handling things. (Why is it hard to ask for help?)  He went on to say I would be doing him a favor because he was bored and needed something to do.  I am sure this is not true but he was trying to spare my feelings.  I mentioned that my flower beds were driving me crazy and that the edges of the grass needed to be trimmed.  We decided on a day that he would come back.  As I shut the door, tears just started to flow from my eyes.  This man didn't know the heavy heart I had that day.  He didn't know that I was feeling so alone.  But God knew.  God knew what I needed and He sent an earthly angel to help me.  And that man did come back with three loads of mulch for my flower beds and a trimmer for all of the edges of my grass.  And he brought his teenage daughter to help.  They mowed and trimmed the grass and shoveled dirt into the flower beds.  They spent all day making my yard look so shiny and pretty.  Then he came back another day and spent hours fixing our sprinklers that weren't working.  He truly lifted my burdens.  After that experience I felt so strongly that God is aware of us and wants to help us and bless us.  And He will send help.  Sometimes we need to be the earthly angels that help others and sometimes we are the ones being helped.  I am so grateful that God is aware of me and loves me.  I am grateful He has been by my side during this really hard trial.

Sometimes you hear people say, "I am grateful for this trial because I learned so much."  That seems hard to believe because who would want some of these trials and be grateful for them!  I think what people really mean to say is, "Though I did not want this trial, I am grateful that I was able to learn and grow so much through it all."  I recently went to my nephew's wedding.  The love between these two young people was almost palpable.  I missed that feeling of new love.  I asked myself, "If you could, would you go back 17 years to when your love for Jaron was new?"  My answer was no, I wouldn't go back.  Why? For one, my love for Jaron has grown so much since that time and because I have learned so much in those years that I wouldn't trade it for anything.  My trials and hard times have taught me so much that I am a different person because of it.  I wouldn't trade that knowledge because I earned it and I want to keep it.  I am sure there is still a lot I need to learn. But for now I will enjoy this time to breath and put into practice all that I have learned.

Thank you for being on this journey with our family.  It has been rough and hard and heart breaking.  But we have been so uplifted by all those who have supported us.  Many times someone would ask me how we were doing and I would answer, "Well, the positive outweighs the negative so we are doing good."  I believe that.  Thank you for being the positive in our lives.  We feel so blessed by all those around us.  We love you and thank you.
Joni