Jaron's Surgery

Well, the big scary thing has happened and we are now on the other side!  Jaron had surgery yesterday and is doing so well!  I feel on top of the world.  I know many hard days are still ahead but it seems all of the fears associated with the surgery have not come true and we are in the best case scenario.  We truly feel like miracles have happened.  
Let me go back a few days. Jaron and I spent Wednesday afternoon at the temple.  We love the temple.  It feels like a little piece of heaven.  We spent an hour holding hands, sharing our fears, expressing our love.  That afternoon will always be a special memory in my mind.   Thursday we spent some time visiting with family but we also had some appointments to prepare for surgery.  One of the things Jaron had to do was get an MRI.  This one was to help line up the machines for surgery.  They glued some “markers” on Jaron’s head to help them line up the machines.  When we got home, the kids were kind of freaked out by what was on dad’s head.

  While we were at the doctor’s, we saw this sign.  Jaron LOVED it.  I need to get something like this to remind us that life is so much bigger than cancer.  There is so much cancer cannot do!

On Thursday night, we again had family over.  Jaron gave the sweetest father's blessings to all of us.  He spoke so much love to us all.  We are so blessed to have him in our life.  While I put the kids to bed, he went in the basement and recorded personal messages to the kids and me.  At this point, we were so afraid he wouldn’t be able to communicate that we wanted to record him talking.  I know we will cherish those recordings forever.  After we put the kids to bed, he and I had a little sushi party.  We love sushi so we ate some and talked.  It was the best “date.”  We finally got to bed about midnight only to be up at 4, getting ready for surgery.  My mom drove us down and it was nice to have her there.  It was a bit of a whirlwind once we got there, meeting nurses and doctors.  By 7:30 they told us we needed to say goodbye and they were ready to take him.  Those last kisses were filled with tears and love.

 You know how, when you are an adult you wish you could climb into your parents lap and be a kid again?  Well, yesterday I did just that.  The apprehension and fear made me feel dizzy and sick.  So after I said goodbye to Jaron, I put a pillow on my mom’s lap and closed my eyes.  She rubbed my head and I spent the day being a daughter... not a mother, or a wife, but a daughter needing her mom.  I am so glad she was there.  I was also surrounded by my two sisters and my brother.  I was so glad to have their support and they were such a comfort.  Jaron had a lot of family there too.  It was like a fan club in the waiting room.

 The nurse would call me every two hours to give an update.  The first time they called and said they had gotten the tumor out.  Jaron had done great being awake.  They were going to do an MRI and then, if all looked good, they would close him up.  The next phone call said that the MRI showed they needed to get more of the tumor.  So they had to go back in and get what hopefully is the rest.  Then they put him back together.  It was about a 7 hour procedure.   When it was done, we met with the doctor.  He was very positive about how much of the tumor he got out.  He felt like he had gotten to healthy tissue and so hopefully it is mostly gone.  He didn’t tell us what kind of a tumor it is because he didn’t want to say until pathology gives him the results but he did say the tumor does not come from some other cancer in the body.  And it seems like the cancer is isolated in the brain.  So it won’t spread to the rest of the body.  This was good news.  He also felt confident that Jaron wouldn’t have permanent communication problems.  That was very good news.  

After surgery, they moved him to the Neuro Critical Care Unit.  We all moved to that waiting room.  “Jaron, party of 15, your waiting room is ready.”  We went there and waited a bit.  Then, we were told that he was ready for me to come and visit.  I almost ran.  I walked in and there he was, alive, breathing, eyes open!  I was so emotional I about lost it.  Then he started talking!  My heart soared.  My husband can talk!  All of my fears disappeared as I listened to him talk.  It was music to my ears.  For the next couple hours, he was so groggy, but he kept asking the same questions.  “What kind of tumor was it? Was it like my moms? Am I all done?”  I answered him over and over, only for him to fall asleep for 10 seconds, wake up and ask again.  It was obvious what was weighing on his mind.  Through all that grogginess he wanted to know what the tumor was.  I reassured him the tumor looked different and that he was all done with the surgery.  In a couple of weeks, pathology might say it is the same tumor as his mom, but I am holding out hope.  His doctor did not give any indication that it was like his mom’s and sister’s, so I felt ok telling Jaron it was different.  The thing that touched my heart, was when, with a drugged voice, he would say, “So I don’t need to worry?”  I would lovingly say, “No.  You don’t need to worry.”   After a while, the pain became very severe.  He kept saying it felt like someone was stabbing him in the head.  I reassured him that someone had stabbed him in the head but that was a few hours ago.  I felt so helpless watching him in pain.  There was nothing I could do but be by him.  Thankfully, around 3 in the morning, they got his pain under control and he was able to rest some.

Today he has walked, he has eaten, he has endured an MRI.  He gets up and uses the restroom by himself.  He can read and write.  His communication does have some problems, but I think those will all heal with time and maybe some therapy.  It is interesting but he struggles knowing names...names of people, places, and things.  So they must have cut the part of the brain the does nouns.  All through the night they would check him by saying, “Where are you?”  He would answer, “I am at that place where they took out that thing.”  He couldn’t remember hospital or tumor, but he did know what he wanted to say.  He even struggled with my name.  He would say to me, “I know you are my wife but I can’t remember your name.”  We would then practice it.  Each time, my name came easier to him.  Also, some names don’t sound familiar.  I was talking about a friend and he didn’t know who it was, even when I described him.  This was a bit frustrating for him.  He also has no peripheral vision in his right eye, which is his good eye.  He keeps saying he hopes that his vision comes back.  We have been reassured by the doctors that all of this will come back in time.  So instead we will play, “I am thinking of a word…” game and I try to guess what Jaron is trying to say.  The most beautiful thing is, he hasn’t forgotten how to say, “I love you.”  He has told me it over and over.  He has kissed me.  He even lifted up his hand, covered in IV’s and chords, and rubbed my face softly.  I don’t need Christmas presents this year.  I already got my Christmas miracle!  Thank you all for your prayers and fasting and kind messages.  We truly feel that the Lord has blessed us so much.  I want to stand on the mountain top and yell my gratitude for heaven to hear.  Today is a good day!

The Happiest Place on Earth

Hello Family and Friends, 

We are nearing the day of Jaron’s surgery.  He goes in on Friday.  He is scheduled for a 6 hour procedure.  There is definitely some apprehension over this but we also feel calm and comforted at this time.  We have been busy this week getting ready for surgery.  On Monday we went down to the Huntsman Cancer Research Center to have a functional MRI done.  Jaron had to be in the machine for over 2 hours.  That was a long time!  Poor guy!  They had Jaron do a lot of mental work during the MRI so that they could map out his brain functions.  They also have entered Jaron into a research study so they did an additional MRI to see how the blood flows to the tumor.  We have a few more appointments tomorrow.  We meet with the anesthesiologist and Jaron has another MRI.  This one helps them set up the machines for surgery.  Then we will be up and gone early Friday for the MAIN EVENT!  This will be a long, hard day for all involved.  We pray that the doctors will be guided as they work on Jaron.  He is an amazing person and we want him to be ok when it is all done. 

 I thought I would do an update on Malinda.  She has recovered really well.  She is up and about.  She communicates well and seems almost back to normal.  They did confirm that her tumor was the same kind as her daughter’s Amy, a glioblastoma.  This is stage 4 cancer.  This has been hard news on us all, but I have watched Jaron be really emotional over this.  He truly loves his mother and is heartbroken about this news.  Malinda starts treatment this next week.  We hope they can get it and we have many more years with this special woman!  

Do you remember those commercials where they would interview the quarterback after winning the Super Bowl?  They would say something like, “You just won the Superbowl.  Where are you going next?”  Then, with great enthusiasm, the player would say, “I’m going to Disneyland!”  Well, in a way we have won the Superbowl, the Superbowl of Cancer.  A person has very low odds of developing a brain tumor and the odds are even lower for it to be a family genetic thing.  On a mathematical probability viewpoint, Jaron has beaten the odds and has developed a family inherited tumor.  Pretty much the same odds as winning the Superbowl.  So imagine me saying to Jaron, “You just won the Cancer Superbowl.  Where will you go next?”  “I’m going to Disneyland.”  And that is just what we did.  We had some generous donors give us a family vacation to California.  We went last week and had a blast!  We spent two days visiting Disneyland and California Adventure.  We visited the beach two days.  And we spent two days visiting Universal Studios.  There was a lot of smiles and laughter.  Many times a tear came to my eye because, for a moment, everything seemed right in the world.  The kids got to be kids and we got to enjoy watching them be kids.  This trip will always be a tender memory.  

Well, dear friends, this has gotten real.  We are facing some scary things and some BIG unknowns.  We are so grateful for the many prayers and much fasting that has been done in our behalf.  We know heaven is listening.  We know we are being blessed to handle this trial.  We are grateful for eternal families.  We are grateful for all of you.  Thank you for strengthening us during this time.  We love you! 

Joni

Huntsman Cancer Center

Life has been a bit crazy around here so this post has been a bit slow in coming.  It has been over a week since we went to the Huntsman Cancer Center, but I wanted to give an update on what happened while we were there and what our plans are.

This was our first time visiting the Huntsman Cancer Center.  It is a beautiful building, nestled up by the base of the mountain.  We parked at one end of the building but the office we needed to visit was on the other end.  As we walked through the building, I was overwhelmed with heavy emotions.  Everyone we saw, all the people sitting in wheelchairs, were sick with cancer.  So many sick people.  And now, Jaron is one of them.  It was a hard reality to see.  We have been inducted into a club that we don’t want to be in.  By the time we got to our doctor’s office, I was weighed down by what we just saw. We got checked in and taken to a room.  Then came in our doctor, Dr. Jensen.  He is known for being a great neurosurgeon and we are so grateful that he is our doctor.  After going over family history and Jaron’s symptoms, he pulled up Jaron’s MRI.  He said, “Well, you get the prize for having your tumor in the worst spot.  We like tumors to be up front like your sister’s.  We are ok with tumors being on the right side like your mom’s.  But we don’t like tumors to be on the left side.”  I don’t think that is a prize we wanted to win. Ugh!  He went on to explain that because of the location of the tumor, in the communication center of the brain, removal can cause future communication problems.  If they just went in and took it out, there is a 50% chance Jaron would have communication problems for the rest of his life.  Not very good odds.  But the way he takes it out lowers that to about 5%.  Our hearts soared with gratitude that we were able to come here.  We like the odds of 5% much better than 50%!  He explained how they will do it.  First they do a functional MRI, where they map the brain’s functions.  They want to know if the tumor has just pushed the brain out of the way or if the tumor has incorporated the brain into itself.  We want the pushing the brain to the side.  Then removal won’t take important brain functions with it.  After that has been done, we move to surgery.  During the surgery, they will wake Jaron up.  Doesn’t that sound so scary for Jaron?  He has to be awake with his brain cut open!  Sounds like Frankenstein or something!  The reason they wake Jaron up is they want him to talk to them.  While they have him talkin, they will stimulate the brain.  If they stimulate the brain and he stops talking, then they know that is a part that they can’t cut.  This will help them be more cautious around the important parts of the brain.  They might not be able to get all of the tumor removed because they are more careful to not damage the brain.  But Jaron has a better chance of recovering fully this way.  The rest of the tumor will be treated with either chemo or radiation.  After they remove most of the tumor, they will put Jaron back to sleep and wheel in an MRI machine that slides up next to the operating table.  They will do an MRI to see how everything looks.  Then they stitch him back together and that’s that.  I am so glad that Jaron is getting so much help.  I have a lot of confidence in these doctors.  

Next week is when we get this all done.  Jaron has a couple MRI’s scheduled.  We meet with the anesthesiologist.  And then surgery.  I can’t imagine what it feels like to be Jaron.  It must be so scary.  He is strong and trying to hold it all together.  He is an amazing man.  I love him very much.  But wow, this is a lot!  

Again, I end with my feelings of gratitude to all of you.  Thank you for your prayers, your kind messages, your gifts, your food, and your support.  Our hearts are overwhelmed with it all.  We feel so loved and comforted.  Thank you for helping us through this journey.  

I will write again soon.  Here is a teaser for my next post.  “Jaron, you just won the “cancer” superbowl.  What will you do next?”

Until next time.  

Joni

Family Pictures and the MRI Results

The family pictures are in and we love them!  Thanks McKenzie!  They are treasures.  I love that we each have our own picture with Jaron.  We love that man. 

I thought I would quickly update what we know so far.  We started yesterday with some recommendations from a neighbor and my cousin that we should be seen at Huntsman Cancer Center.  Thankfully my cousin, who works there, was able to get us talking to the right people and we made an appointment in a couple of days.  We also were blessed that our insurance enrolled us in the insurance’s cancer treatment program so we are able to go to this doctor.  But since we already had a followup with our doctor here at McKay Dee, we went to that appointment yesterday afternoon.  Turns out, our doctor at McKay Dee is good friends with the doctor at the Huntsman Center.  He was very encouraging for us to seek treatment down there.  The doctor at McKay Dee is great and we trust him completely.  He just feels that it will be nice to do all of Jaron’s treatment in the same place and the Huntsman Center will have the best cancer fighting stuff.  At our appointment yesterday, we were able to see the new MRI.  The tumor is there and it shows all the signs of being malignant, cancerous, but the hopeful news is it doesn’t seem fast growing.  They know this because a fast growing tumor sends the blood supply to the edges to help it grow faster.  Jaron’s blood supply was even throughout.  That is something we will hold onto.  Jaron will still have to have brain surgery and cancer treatments, but we feel more hopeful that he has a fighting chance.  The doctor talked about how they want to get genetic testing on the family.  He said in very rare cases, a family will have a DNA malformation where the body does not suppress tumors.  I guess our bodies are always fighting bad cells from forming a tumor.  In some cases, that message doesn’t get sent and a tumor grows.  This family could very well have that malformation and that is why we are seeing tumors show up in different family members.  I sympathize with Jaron’s two other brothers.  They are worried that they either have or at sometime could have a brain tumor.  My heart aches for the worry they must be feeling.  We will pray that they don’t have to go down this road.  

So our plans for now are to see the doctor down at the Huntsman Center.  We were told once we are seen, the surgery will be only a day or two after that.  We are getting a few things in order to prepare for Jaron’s surgery.  Jaron was given the news that he can’t drive anymore.  We had a good laugh over this.  Driving is not one of my strengths.  I am a safe and OVERLY cautious driver, but my depth perception is off, so I hit a curb or two every once in a while.  I am usually the navigator and Jaron is usually the driver.  The roles have changed.  We hope we both survive!  

A great blessing is my mom is here.  She came yesterday and cleaned with me and watched the kids and made dinner.  There is something so comforting to be able to hug your mom and have her take care of you, even when you are all grown up.  I love you mom!  Thanks for visiting. 

We are doing ok.  We are very grateful for the many prayers, messages, and kind deeds that are coming our way!  Thank you.  We are strengthened by you all.  We will let you know when we know more.  I love you all! 

Joni 

The Beginning of Our Adventures

Recently I was talking with my uncle, telling him about a funny experience that had happened to my family.  He said something like, “Life is all about getting material for a good story.”  So here I write about the “material” we have been getting recently, and it is quite the story!  

Around six months ago, Jaron started telling me he was having trouble communicating.  He would be in a conversation, and his mind would go blank.  He wouldn’t know what they were talking about.  Or he would have an experience where he couldn’t get out the words he wanted to say.  This would happen for a minute or two and then would go away.  He always was aware of who he was and where he was.  He would just have an “episode” where he couldn’t communicate or was confused.  This went on for quite a while, but not until recently did I actually witness it.  It happened at home two times.  When I saw what was going on, I knew it was more than just getting older.  Something was wrong.  So we set up an appointment with his doctor.  The day of the appointment was the sad day that my dad passed away.  Jaron rescheduled his appointment so he could be with me on this very hard day. 

We went to the doctor a few days later.  The doctor didn’t seem very concerned but thought it was a good idea to get an MRI.  So we scheduled that.  During this time we had the funeral for my father, which was a beautiful tribute to this great man.  Two days after his funeral, it was clear that something was going on with my mother-in-law, Malinda.  One side of her face was drooping and her speech was slurred.  They took her to the emergency room, only to discover that she had a brain tumor.  What a shock!  This seemed unreal.  It has only been 6 years since her daughter, Amy, passed away after having 3 brain tumors over a 10 year period.  And now they were having to do it all over again!  It was devastating and heartbreaking.  Because Jaron’s MRI fell on the same day as his mother having brain surgery, we postponed his test and put our focus on Malinda.  We were grateful that all seemed to go well with surgery and she is recovering well.  Her cancer treatments will start after she has healed from surgery. 

It finally worked out that we got Jaron in for an MRI.  It was in the evening and we were the only one’s at the facility.  Jaron went in with the technician and I sat in some chairs nearby.  While they were in there, a man walked past and entered the room with the technician.  He was in their for quite a while.  When he walked out, he gave me a kind, but sad smile.  My stomach dropped.  My anxiety went through the roof.  Something was wrong and he knew it!  When Jaron came out, he said to the technician, “Do I have a brain tumor?”  She said, “Well, all I can say is you have a brain.”  Jaron explained about his mom and sister.  She said, “Oh, so there is a family history?  Well, I am not a doctor, so I can’t say anything, but I am sure you will be contacted tomorrow and will need some further testing.”  That was all she could tell us.  So we walked to the car and I cried.  Something was wrong and we had to wait, but we knew something was wrong!  We decided to not worry the kids before we knew anything, so we wiped our eyes, went home and had a normal night.  I didn’t sleep that night more than a couple hours.  I was so sick with worry of what could be wrong.  

The next day we were told that Jaron’s doctor wanted to talk to us in person and he couldn’t see us until 2:30pm that day.  Oh the torture to wait the whole day!  Jaron went to work and I did my normal mom stuff, but we were both DYING inside!  Finally the appointment came.  And we were floored to learn that Jaron too had a brain tumor.  His is on the left side, in the communication part of the brain.  It is the size of a silver dollar.  The radiologist’s impression is that it is cancerous.  WHAT A SHOCK!  Could this really be happening?  We just couldn’t quite understand it!  Our first step was to make an appointment with the neurosurgeon.  Next, we made a plan.  The kids had a lot of fun activities that day so we decided to wait until that evening to tell the kids.  Then, we decided to go to Jaron’s parents’ house.  We had to tell them the sad news that Jaron also has a brain tumor.  Such hard news to share.  We left there and again put on brave faces and had a normal night for the next few hours.  At the end of the day, we gathered our children together and said a family prayer.  Then we told them about Jaron.  It was as sad as you can imagine.  There were a lot of tears, hugs, crying, “I love you’s”.  It was a tender moment.  We decided that the next day needed to be a family day.  What better way to spend the day together than to go to the zoo!  With those fun plans set, and with tears in our eyes, the kids finally went to bed.   I fell asleep easy but woke up at 1:30 am in a panic.  All of the fear of what was happening was coming so strong, I thought I might go hysterical.  Then I remembered my dad.  When he couldn’t sleep, he would say lists.  He would say the names of the presidents of the United States, or the kings and queens of England.  I didn’t know any of those but I do know the songs for the prophets of the church, the 50 states, and the preamble.  So I followed my dad’s example, and I went through those lists.  When I was done, the panic was gone and I felt calm.  I didn’t go back to sleep, but was so grateful that I wasn’t in a panic.  Thanks dad for being by me in those dark hours! 

The next day we drove to the zoo and spent a perfect day together.  The fall leaves were beautiful.  The weather was so nice.  The crowds were small.  We slowly walked around, holding hands, and enjoyed the fun animals.  It was the best day and we felt so close to be together.   The kids were kids for a little while and the worries of our life seemed to go to the back of our minds as we just enjoyed this time.  It was the best. 

Friday we met with the neurosurgeon.  He felt that our first MRI was not enough information for him to make a plan.  He ordered us to do a contrasting MRI (where they use dye to help see it more clearly) and scheduled for us to come back on Monday at 4pm.  Jaron and I left that appointment and went to our favorite sushi restaurant in Layton and had a delicious lunch.  We laughed cause it seems hard to find something to talk about.  Memories seem too tender.  The future seems too uncertain.  The present is so painful.  But we managed to have a nice lunch together.  And we made some plans for the now.  That night Jaron did an MRI and we are waiting for the results. 

I decided the number one thing on our list was to get family pictures.  Usually I spend a week planning something like this.  I had less than 24 hours!  Thankfully we were able to get my cousin’s wife, McKenzie Haws, to take our pictures.  She is so busy with teaching school and with 3 little kids, but she was so kind to make time for us.  I cut Jaron’s hair, curled the girls hair, quickly picked out outfits for everyone, and ran to my sweet neighbor’s house to get me a haircut.  It was a whirlwind of a day, but we pulled it off.  I look forward to seeing the pictures and know they will be a treasure forever.  

Today was such a sweet day.  We have many family, friends, and our ward who fasted for us.  It is an overwhelming feeling to have so many people praying for you and supporting you.  It makes me cry happy tears when I think of it.  Jaron and I decided to both get up in church and share our feelings.  We thanked the ward, gave a little update, and bore our testimonies of our Savior.  He truly is carrying our burden and strengthening us during this time.  We love Him and are so grateful He is by our side through all of this.  God is Great! 

Tomorrow is Jaron’s appointment and so we will hopefully know more then.  But we are at peace that whatever will come, we will be ok.  We are surrounded by so much love and support that we are confident we can get through this.  Thank you for being that support.  Thank you for praying for our family.  We feel your prayers.  And we love you all!  

I will write again when I have more “material.”  

-Joni Allred