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.

The Cold, Hard Truth

Its been over a month since I have written on this blog because life has been pretty calm.   We have had no trips to the hospital and no extremely painful conditions.  It has been nice to have some quieter days.  

At the beginning of January, Jaron celebrated his 38th birthday.  Our views on Jaron’s birthday has changed.  Instead of feeling sad that he is getting older, we will now celebrate that we had another year with him.  So we are grateful that we were able to celebrate another year with this guy!  

 In the middle of January, Jaron finished his radiation treatments.  This was a HUGE accomplishment.  He made it through 33 treatments, 7 weeks of chemo and radiation.  We were so grateful to reach another major milestone.  Good Job Jaron! 

Next week Jaron starts chemo again.  He will do chemo 5 days out of each month for 6 months of treatment.  Cross our fingers it won't be too bad.  
 This picture shows Jaron’s hair loss.  We thought it would be his whole head but it really is just the one side.  Now he is sporting a cool shaved side.  We thought about shaving the other side so he could look like Mr. T. 

Though we have not had any major hardships this month, we have learned some important information.  In December, we met with genetic testing and they ran some tests.  They recently contacted Jaron and said they had some strong evidence that he has some mutations of the TP 53 gene.  This is the gene that causes cancer to show up a lot in certain families.  Their next step is to test Jaron’s mom and maternal grandparents.  If they can establish some patterns, then they can test our children.  This information will help them know if they need to do cancer screenings for the children.  They would start that now and monitor them throughout their lives.  It will be good to get some answers, but it is also scary to think that one of our sweet children might have to experience cancer, too.  We pray that it wasn’t passed on to them.  

Yesterday was a big day.  We started the day with Jaron getting an MRI.  Then, he did some blood work and we finished the day by meeting with his oncologist.  Jaron’s MRI looked great.  No visible tumor and no growth.  Everything looks clean and very promising.  His blood work looks great.  When Jaron’s tumor was removed, they sent it off to do some extensive testing.  This helps them know the nature of the cancer.  We had some encouraging results.  The tumor’s mutations indicate that it is not an aggressive tumor.  It could stay away for quite a few years.  With this type of tumor, Jaron could live for 10 to 15 years, maybe even 20.  When it comes back, it most likely won’t be very aggressive.  So he has some good years ahead.  We met this news with mixed emotions.  When we shared the news with others, all of the responses were so positive.  And we felt those same hopeful feelings.  When faced with the possibility of living only 2 to 5 years, being told you could have 10 to 15 years is awesome news.  But if you told a healthy man in his 30’s that he only has 10 to 15 years to live, that also seems really short.  So we feel grateful that he most likely has some time to live life and enjoy raising his young kids.  But we also are saddened that he has cancer, that he most likely will die from this cancer, and he might not live to a ripe old age.  It is a funny place to be where we feel optimism and gratitude but we also feel sadness and anxiety.  Such an unusual journey!

I was riding in the car with a friend last week and we were talking about Jaron and what I might do if he passes away.  She asked me how I even wrap my brain around thoughts like that.  Those are huge thoughts that are hard to accept but I have come to some conclusion.  Lots of people die young and a lot of the time, it is with no warning.  There is so much heartache over these tragic deaths.  The families may say things like, “We didn’t get to say goodbye.”   My own father passed away last September and we didn’t know our time would be cut short with him.  I am glad he lived a wonderful and active life, but we might have enjoyed his last months and days more if we knew he would be leaving us.  

I call this tumor of Jaron’s our warning shot.  It came and turned our world upside down.  Life has been SO HARD but we are getting back to a new normal.  I feel like I have my wonderful and loving husband back.  His health is returning.  He most likely has a few good years ahead of him before it comes back.  So with this tumor came the warning, “Hey, I am not going to take your life just yet.  So go, live, love, and enjoy life while you can.  And be grateful for the time you do have.”  With that warning shot, we now hug a little tighter, hold hands a little more, take life a little slower, and speak a little kinder.  I am grateful for each day I wake up to my sweet husband and each night I kiss him good night.  I am grateful for each “I love you” I hear him say.  I am grateful for the new perspective I have been given.  It has taught me to love deeper because our time on this earth does not last forever. 

Jaron and I have made a 7 year bucket list - things we want to do together, things we want to do with the kids, and things he wants to do alone (like hunting).  I hope and pray that we can do all of those fun things together.  Then, when our time is done here, we can say, “We really LIVED!”