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

One Year Anniversary

Gratefully, we only have good news to share today.  Jaron went in last week for a check up and his MRI shows no tumor growth.  We were so happy to hear this news.  This was his first MRI after finishing treatment in July so we were worried that something might be growing.  But happily, it was still clean.  Often we get asked if Jaron is in remission.  Sadly, Jaron never gets to be in remission.  He will always have cancer in him.  He will always be monitored to see if those cancer cells are growing or not.  So each time we go in, we often think, “Is this the time we will hear that the cancer is growing?”  Someday that will happen but we are grateful that day is not today.  We will enjoy the clean bill of health for now. 

The kids all had their full body MRIs done in August.  This was quite the process.  We put Bethany under anesthesia because she is so active.  We didn’t think she could hold still.  But Clark and Vienna did it with no anesthesia and they were in there for over two hours each.  Luckily the technicians put goggles on them so the kids could watch a movie but, boy, that was a tough day for them.  I am so proud of how brave they were!  Vienna and Clark had some follow ups to see if some of the abnormalities found are normal and so far, they seem to be ok.  I am grateful that no cancers were found.  It was interesting as we drove home from their scans.  The kids talked for over ten minutes comparing their experience and sharing tricks they learned.  I heard Clark say, “I asked them to turn on closed captioning so I could understand what was going on in the movie when the MRI machine was so loud.”  Vienna said, “I told them to turn on the AC so it wasn’t so hot.”  I quietly drove as I listened to my kids bond over their experiences.  My kids don't always get along but for this small moment, I felt lucky to watch them connect and support each other.  I really wish they didn’t have to go through this but I feel blessed to watch them go through it together.  They are brave and amazing children.  

So for now we will breathe for a bit and enjoy the days where cancer isn’t all consuming.  Jaron is working full time and getting his strength back slowly.  It is nice for him and all of us to not have to do chemo every four weeks.  We will try to enjoy these days while we can. 

It was one year ago that we learned of Jaron’s brain tumor.  The memories are still so clear.  I remember going in for his first MRI.  He had had some confusing moments that had us concerned.  The doctor thought we should do an MRI, but mostly as a precaution.  We went after hours so only the technician was working.  I sat alone in the waiting room, writing thank you notes for the kindness shown me after my father had recently passed away.  I remember seeing an official-looking man come walking past me and into the room with the technician.  I don’t know how I knew, but I thought, “I think that is the radiologist.  He isn’t suppose to be here.”  After about 5 minutes, he came walking back.  He passed me and gave me the most sympathetic look.  My heart just dropped and I felt sick.  Was their something wrong?  After the MRI we were told that our doctor would be calling us in the morning and we would need to do another MRI.  She couldn’t tell us anymore.  I remember crying on the way to the car.  We knew something was wrong, but what?  The next day took forever until we finally met with the doctor.  He sadly told us Jaron had a brain tumor.  We were shocked, scared, heart broken.  We called our family.  We told the children.  We cried and cried.  Then there were a lot of appointments, surgery, complications, hospital stays, radiation, chemo…the nightmare just kept on going.  It seems that anniversaries can be very painful as the feelings and memories come back.  I am amazed we have made it a year.  It feels good to look in the rear view mirror and think, “Look at that mountain we climbed!  We made it!”  There are many more mountains to climb but I feel glad this one is behind us.  I said to Jaron last night, “No matter what cancer you have in the future we will never be at the beginning again.”  It was scary walking into Huntsman for the first time.  It was intimidating meeting so many doctors and trying to learn how things would work. We are now experienced cancer patients.  I am grateful we don’t have to be at the beginning again.      

There is a song on the radio that often makes me think.  It says, “I wish somebody would have told me, bade, someday these will be the good old days.”  Looking back on this year, I know someday I will say “Those were the good old days.”  Though there have been so many hard times, there has been a lot of good too.  We have been so uplifted by all of you.  We have felt the loving support of everyone around us.  I will never forget all the kindness shown us.  Often, Jaron was too sick to do anything so as a family, we would sit down and watch a movie together.  We watched all of the Marvel movies, starting with the First Avenger.  I know I will fondly look back on our movie nights, all of us cuddled up together on the couch.  I also know I will lovingly remember the time I got to spend with Jaron.  Many days he rested on the couch while I did housework.  I enjoyed having him there.  We joked that going to radiation everyday was like going on a daily date.  I really have liked being with Jaron more this last year.  There are a lot of good memories that have come from this year.  I am glad I got to enjoy them when they happened and now I get to enjoy the memories.  

Along with so much goodness, there has been a lot of hard days.  People would say to me, “You need to have a lot of laughter in the home.  Laughter is the best medicine.”  or “Enjoy every minute together.”  I felt guilty that I wasn’t making the best of every moment.  We weren’t laughing.  I wasn’t enjoying these days.  I had to release that guilt and be more compassionate towards myself because, in reality, some days there wasn’t much to enjoy.  Often, Jaron was so sick and miserable.  The kids weren’t always handling the stress in the home well.  I was overwhelmed as I took on the roll of father, mother, nurse, pharmacist, homemaker, farmer, financial coordinator, etc. During this time, the only way I got through, was to do as the scriptures say, “Be Still, and Know that I am God.”  I would try to be still.  I would pray and ask for the Lord’s grace to help me be stronger than I am and to do more than I could do alone.  The miracle is, that prayer was always answered.  He never left my side.  I am so grateful He has walked this journey this last year with me and my family.  I do feel that more good than bad has come out of our time with cancer.  I am so grateful for all of you.  Thank you for being on this crazy ride with us. Happy One Year Anniversary!   

I Love Elephants!

I recently shared that Jaron was diagnosed with Li-Fraumeni Syndrome.  This is a genetic condition that makes you predisposed to developing cancer.  With his positive diagnosis, the next step was to have our children tested.  So one morning we took all three children to the office and had them fill up vials of spit.  The kids were grateful it wasn’t blood that they had to give.  We were told that the chances of one of our children having the condition was 50%.  We were hoping that all of the children were negative, but knew in reality that one might come back positive.  My new motto is to not worry about something until I know to worry about it.  So for the next few weeks I tried to keep our minds off of the test, hoping there would be nothing to worry about.  We got a call one afternoon with the test results.  Jaron and I went up to our room and put the genetic counselor on speaker phone.  We were shocked when we heard her say, “All 3 of your children tested positive for having Li-Fraumeni Syndrome.”  Jaron just crashed to the floor and didn’t say anything.  I was surprised that I was ok with the news.  I carried on the rest of the phone conversation, thinking, “Wow, I am handling this great!”  But as soon as I said goodbye, the tears and sorrow came.  All 3 of my children have it!  We were devastated.  With this condition, the odds are almost 100 % that they will have cancer in their lifetime.  We don’t know what kind or when, but it will happen.  My sweet children that I love now have to feel like ticking time bombs for cancer.  This was almost too much!  We decided to not tell the kids until we were ok with the news.  The kids really pick up on our feelings and we wanted to be calm about it so they would feel calm too.  The next day we went and had a family outing, sharing the news with them on the way.  It was a lot for them to process and they are still trying to come to terms with it, but they are brave children.  They have amazed me with the strength they have shown over this last year.  I am blessed to be their mother.

So what does this diagnosis mean for them?  They are now under the care of a doctor at Huntsman that is watching for cancer.  Yearly they will do scans of their whole body.  I have to be on the alert for signs of possible cancer.  But other than that, they hopefully can live a normal and happy life.  Maybe cancer won’t come for many years and by then, they will have a cure.  This is my hope for them.  We debated on sharing this news with the world.  At first, I wanted to tell nobody.  I wanted my children to have a normal life.  As a mother, I feared this diagnosis would prevent them from some experiences in life.  I feared they would be treated differently.  But as time has gone on, I realized that we need the prayers and support of all of you around us.  This is too big of news to keep to ourselves.  We hope that this news will bring my children more love and support, not less.  And hopefully they can still have a normal life, filled with love and happiness.  

I posted a few weeks ago about an awesome program that the company Jaron works for has joined.  It is called 5 for the Fight.  It is set up so that companies can have their employees give $5 from each paycheck towards cancer research.  I am so grateful for Sure Steel for supporting this.  I was so touched by the video made, recruiting their employees and other companies to join in the fight.  If you haven’t seen the video, here is the link.  Jaron is one of the people featured in the video.  Go Jaron!! 5 For the Fight

The company that started this program is Qualtrics, based out of Provo.  Because Jaron was featured in the video, Qualtrics invited us to come hear a presentation that would be given to their employees.  The employees wanted to learn about the research that they were raising money for.  So last Wednesday Jaron and I drove down to Provo.  My cousin Emily’s husband Johnny works their and was able to be our host for the event.  That place is cool!  The front foyer is a basketball court.  It was a hip place and I felt smarter just being there!  The event was a presentation by Dr. Schiffman and Dr. Schroder, talking about their research into a cure for cancer.  When we got there, the event was about to get started.  They had some salads for us, so we quickly sat down to eat.  The two presenters sat with us and we made small chat.  After hearing the presentation, I realized that I ate lunch with men that could win a Nobel Prize and cure cancer and all I did was small talk.  I should have at least asked for an autograph.  Maybe it was good I didn’t know who I was eating with or I might have been star struck.  But boy, these men are amazing.  

Here is the short story of what they shared.    

A few years ago, Dr. Schiffman learned that elephants rarely get cancer.  This was interesting because elephants are so big, they should get cancer more than us, not less.  So Dr. Schiffman researched why and discovered that elephants have 40 genes that prevent cancer.  Humans have only two, (Jaron and my kids only have one.)  With this discovery, he needed to find a way to get the cancer fighting protein made by the elephants genes into the human body.  Thats when he met Dr. Avi Schroder from Israel.  Dr. Schroder was working with nano particles.  He described these nano particles like tennis balls, hollow in the middle, but so so small, smaller than the cells in the body.  They can put medicine inside these particles and then the particles can move through the body to deliver treatments to the source of the problem.  These two men met at a conference and have put their discoveries together.  They put the elephant protein inside these nano particles and it goes in the body and finds the cancer.  One reason cancer is so bad is because it hides from the body.  The body doesn’t realize it is there and doesn’t destroy it.  This elephant protein helps signal to the body that cancer is there and needs to be destroyed.  The body can then kill the cancer cells instead of feeding them.  This treatment has been so successful in the lab.  They are a few years away from human trials but this really could be a cure for cancer.  

I was so inspired hearing these two men.  I laughed.  I cheered.  I cried.  For the first time in months, I felt hope!  I now have hope that my family might not have to suffer and die from cancer.  This could be the cure.  I was so uplifted by this information.  It was such a good day and I have been so excited to hear what this research is doing.  I am so grateful to Qualtrics and Sure Steel for raising money for Dr. Schiffman and Dr. Schroder’s research.  I have such high hopes that this will be the cure.  

Because my hopes are now with these doctors and their elephant discovery, elephants are my new favorite animal.  Yesterday for my birthday I got some cute elephant-themed presents.  I have always thought elephants are amazing animals but now they are my mascot, my hope…my hope that my children won’t have to suffer the pains of cancer.  After watching Jaron this last year, I hate cancer. I hope someday, others can be freed from this pain.  I wouldn’t wish cancer on anybody! 

 

So, how are we doing?  We are moving forward, hoping someday for a cure.  We are learning to cherish the today because life is not guaranteed.  We want to live and love and enjoy life while we can.  And I think this is a good way to live each day.  So in a way, cancer has been a good teacher for us.  But I am ready for recess now!  

Two More Treatments!

Today marks the first day of Jaron’s second to last treatment of chemo.  He woke, as usual, with a migraine.  I got up to get him medicine and couldn’t sleep so I decided I would write an update.  I can’t believe we are on our second to last chemo treatment.  Thinking back to October when all this started, it seemed like such a long road ahead.  But now we have almost made it through.  I want to celebrate that we are so close to the end.  But Jaron feels differently than I do.  Whenever someone congratulates him on only having two more treatments, I see a look in his eye that says, “I can’t do two more!”  It reminds me of a pregnant woman with two months left in her pregnancy.  I remember people saying, “You only have two months left!”  And I would think, “I can’t make it for two more months!  I can’t make it for two more days!”  So you can celebrate with me that we only have two more treatments left and cheer Jaron on that he can make it through two more treatments.   

It’s funny how the mind can play tricks on you.  My mind has started saying things like, “Only two more treatments and life can get back to normal.”  “Only two more treatments and this nightmare will be behind us.”  I started getting excited about being free from all this cancer garbage.  Then we got some sobering news.  Jaron has a genetic mutation that makes him more susceptible to cancer.  For those who interested in things like this, I will explain.  (If not, jump to the next paragraph.) All humans are born with two copies of the gene TP 53.  This gene suppresses tumors.  When a cell splits, this gene checks that it was formed correctly.  If it is a damaged copy, then it destroys the cell.  We have two TP 53 genes, one from each parent, so that if one gene gets damaged during the cell splitting, the other one is back up and continues working.  In Jaron’s case, he only has one working TP 53 gene.  The other one is mutated. So if his good gene is damaged during the creation of the new cell, whether by the environment or bad luck, he has no back up.  A tumor can then grow.  This is not just for brain tumors, but all types of tumors.  

So what does this mean?  It means they are now going to monitor Jaron for all types of cancers.  He will have full body scans, colonoscopies, dermatologist visits, etc.  Not only has cancer been in our past, with losing Jaron’s sweet sister Amy, but it is also in our present, and now it is most definitely in our future.  It makes me want to scream and throw a fit like a toddler!  Leave us alone Cancer!   My kids like this show on Netflix called Alexa and Katie.  This show is about a girl who has cancer and her friend who supports her through it.  During one episode, the girl with cancer can’t go to prom because their is a flu outbreak and she could get sick.  She says something like, “I try to say that cancer won’t control my life but in reality, it does.”  When I overheard her say that, I stopped what I was doing and said, “Amen Sister!”  That was such a true statement!  Sometimes I feel like cancer is in the driver’s seat of our lives.                        I have been feeling discouraged about this lately.  All I want to do is reach the end of this trial and get past it.  A few months ago I heard a talk given by a girl who recently lost her sister to cancer.  She said something that has helped me during this discouraging time.  She said, “You know the saying, “There is light at the end of the tunnel?  Well, if we pay attention, there is light in the tunnel, all along the way.  What we need to do is recognize the light and move towards the light.”  I loved this visual.  All I want to do is get to the end of the tunnel, but the end seems to be getting farther away, not closer.  But if I look for it, there has been a lot of light during this journey.  There has been so much service given to our family.  So many people have generously donated to us, helping us with all the many expenses that come from cancer.  We have received encouraging words, supportive hugs, quiet acts of kindness.  I have never felt so supported and cared for by the wonderful people around me then I have during the last 10 months.  Also, I have never felt so lifted up by my Savior.  Many days He has carried me through.  I am forever grateful for His grace that has made me stronger than I am.  In reality, there has been more light then darkness in our life.  Instead of focusing on the end of the ever growing tunnel, I will step into the light.  Cancer, you may be in the driver’s seat, but we have a lot of friends with us along for the ride! So bring it on!   

Thank you for helping us on this journey.  Thank you for bringing light into our lives.  I will be forever grateful for you!  

Jaron

Well, it has been a while since I have checked in.  Life has moved forward in a pretty steady way. There hasn’t been any medical emergencies, which we are grateful for.  But life has been kind of hard lately. Jaron has now endured two rounds of chemo, and they were rough on him. The schedule right now is that he takes chemo for 5 days out of every 28 days.  This wouldn’t be too bad except that it makes him quite sick. He feels very nauseous and tired. His brain feels fuzzy. Words are harder to say. And it lingers even after he is done with the medicine.  So he has stayed in bed for about a week each time. Then he slowly gets back to life. The nausea goes away but the exhaustion stays for at least another week. It is hard to watch him be so sick and tired.  The only good thing is the first round of chemo happened during the Olympics. The second round was during the opening weekend of the NCAA tournament. So he has had something good to watch. Before he starts chemo, I try to stock up on good foods that help him get through.  Here is an example of a breakfast and lunch that I made him. Looks yummy right? He didn’t think so. I usually have to force him to eat. It’s hard to be nauseous.

 Next week Jaron goes in for an MRI and another check up.  If all goes well, we will continue on with four more chemo treatments.  Jaron will be doing treatment until at least the middle of July. We have planned a few family camping trips in August that we are looking forward to.  Also, Vienna and Clark have been accepted to go to camp at Camp Kesem. This camp is for children who have parents with cancer. They get to go for a whole week and stay in cabins.  I have heard great things about this. I think it should be a really positive experience for them. So we have some things to look forward to but still some hard things to get through.  One day at a time.

I have been thinking about something lately.  Being married to a person, you see all sides of the person.  You see them when they are tired or stressed. You see them when they are frustrated or sick.  You see a side that most people don’t see. Being married to Jaron has given me a front row seat in his life.  I have now watched him be diagnosed with a brain tumor, have brain surgery, have blood clots, go through radiation, and have to suffer through chemo treatments.  I have seen him go through some really horrible things. And after watching all of that, I have to say, Jaron is MY HERO! He is amazing. He rarely complains. He endures hard things with strength and patience.  He almost always speaks with a kind word. He is grateful for the good things in his life. He has stayed close to God and has not been angry with Him. He has humbly accepted the trials that have come into his life.  He also finds ways to be a good dad. Even on the days he is really sick, he helps out by having Bethany do her daily reading with him. She cuddles up on his lap and they read together. It is a sweet time for them to be together and it takes one thing off of my plate.  I appreciate it. Another thing he has done during his sick days is play Uno with Bethany. She loves this and they have probably played 100 games. I often have to remind him she is only 6 and he should let her win sometimes. But boy, Bethany loves sitting with Jaron and playing cards.  It amazes me that when he isn’t feeling good, he still finds ways to be a good dad.

About 3 months ago Jaron realized that Clark wouldn’t get his Webelos and Arrow of Light awards with scouts if they didn’t work hard.  We have great scout leaders but a lot of it needs to be done at home. It wouldn’t have been the end of the world if Clark hadn’t gotten these awards, but scouts are very important to Jaron.  He spent many summers growing up working at scout camp. He really wanted Clark to get these awards. So every Sunday Jaron would spend an hour with Clark working on scouts. As I watched them sitting together each week, I was touched by the service Jaron was giving Clark. He was giving his son quality time.  He was also sharing with Clark knowledge he had acquired during his many years as a boy scout. I know this was precious time well spent. Last week when Clark received his Webelos and Arrow of Light awards, I was proud of him. But, I was more proud of the father who, while going through cancer treatment, made the time to help his son.  What a good dad!

This last week, Jaron wanted to take Vienna to the temple again.  So we made an appointment and showed up on Friday night. I was only going to watch, so I sat on a bench behind them.  I watched as they sat down together. Jaron put his arm around Vienna and she leaned into him. They whispered something to each other and then sat there close together for a while.  My heart was so touched watching them together. I wanted to freeze time so Vienna could always remember what it feels like to have her dad’s arm loving wrapped around her shoulders. Vienna is turning into a young woman and has shown signs of pushing us away.  But Jaron won’t allow this. He hugs her and tells her he loves her. He has talks with her. He knows their relationship is so important as she tries to survive teenage years. Vienna is a lucky girl to have Jaron for a dad.

I have always known that Jaron was a good and kind man.  That’s why I married him. And he did not disappoint. But these last few months have shown me what an amazing man he is.  I am so grateful that I get to go along for the ride with him. I am often in awe of what he does. He is an inspiration to me and I am sure to those around him.  I am just the lucky one who gets to call him Honey.