Happy Thanksgiving

Dear Family and Friends,

This is Joni's sisters.  We are making a guest post on Joni’s blog because we want to share with you an opportunity to help this wonderful family.  As we all want to support Jaron through this difficult time, we have decided to raise funds to help him with his medical bills.  We are so very grateful for the abundance of love, concern, and prayers offered to this family.  So many people have lifted their spirits through kindness when they’ve needed it most.  Jaron has been unable to work for quite some time, and his employers have been incredibly generous in helping their family.  We are so grateful!  Extended family has also stepped up to lend crucial support and help with their day-to-day needs.  But with the mounting medical bills that will continue into the foreseeable future, we felt that now would be a good time to ask for help.  

Jaron has a large cheering section of people who love him, especially his three young children!  We all want to support him every step of the way. We would love to ease the stress on Joni and Jaron’s mind as they get the medical care Jaron needs to fight this cancer!  As we approach this holiday season, where the spirit of giving is so strong, please think of the Allred family.  They would be forever grateful for whatever you are willing to contribute.  

If you would like to make a donation to their family at this time, here are a few ideas.

We have opened an America First Credit Union Account.  You could stop by any AFCU to make a deposit.  You can give them the name of Joni and Jaron Allred.  It is the account opened in November of 2017.  If you need it, you can get the account number by messaging Joni.  Or if you prefer, we have a Venmo account, @Joni-Allred. 

Again, we are so grateful for everyone who has been so kind.  We are thankful for all of the messages and prayers and kind deeds.  In the midst of an overwhelmingly difficult trial, it is so beautiful to see the goodness of those around us.  So many people love Jaron!!  He and Joni feel that love and support.  And they are so thankful.

Keep fighting, Jaron!  We love you!  

Love, 

Joni’s Sisters 

Joni’s update:  As they say, “No news is good news.”  There hasn’t been much to report lately because Jaron has been doing really great.  The blood clots are clearing.  The pain is receding.  He is able to walk more.  This is all really good news!  He feels like he is slowly returning to himself.  He still is tired a lot, which has a lot to with the medication he is on.  He is feeling more pain in his head because he is being weened from the steroid.  He gets frustrated with his language.  He still struggles with names and sometimes says the wrong words.  Sometimes we laugh cause he pulls up some crazy words when trying to say something.  Other times he has to take a breathe and endure the frustration. But all in all, he is making great progress and healing well.  

We have had two doctor appointments lately.  Last week we went in and Jaron was fitted for the radiation mask.  They fit this mask perfectly to his face so that when he is in radiation, he will not move at all.  As we were in the waiting room, an old man came walking out.  He had dread locks down to his waist and they were green.  I leaned over to Jaron and said I hope radiation doesn't turn him green.  Jaron thought the man looked cool.

They took Jaron back for almost an hour.  As I sat in the waiting room, I wrote this post.  

“I am sitting here waiting for Jaron to get fitted for his radiation mask. In the foyer, a talented man is playing the piano. It feels like he is playing for me. 

‘Little darling, I feel that ice is slowly melting

Little darling, it seems like years since it's been clear

Here comes the sun

Here comes the sun, and I say

It's all right.'

I hope it will be alright.”  

It touched my heart so much to hear this song.  When I posted this on Instagram, my sweet cousin commented that she envisioned my angel dad whispering into the piano man’s ear, “Can you play this song for my little girl.”  I have thought of that over and over.  I hope my dad was there.  I miss him so much.  

Today Jaron had a “set-up” appointment with radiation.  We went to the brand new facility in Farmington.  It is SO nice.  Everything is brand new and shiny.  It is comforting knowing we are getting the newest machine.  I hope that helps Jaron’s treatment.  They allowed me to come back.  I watched these sweet gals lock Jaron up on the table.  Then this big machine swirled around him.  I was a little overcome.  Sometimes it is still hard to believe what is going on but things like this make it feel too real.  Jaron wasn’t to worried about anything besides not freaking out.  That must feel claustrophobic.  But his is strong and they let him listen to music, so he isn’t too worried.

Jaron’s chemotherapy is a pill he takes every night.  It came in the mail.  That was weird to open a package and to say, “Jaron, your chemo is here!”  Brain cancer is hard to treat because it is hard to get the chemo to the brain.  So chemo through an IV isn’t as effective as a pill.  Jaron starts these pills on Sunday. Then on Monday he starts his radiation.  He will do these for six weeks.  Then he will do chemo for the next 6 months.  They say Jaron will feel pretty ok for the first two weeks but then he will start feeling more tired and will lose his hair.  This is a long road but we are hopeful it will be effective.  

My aunt brought dinner last week and said, “How are the children doing?”  I realized that I share a lot of my thoughts and a lot of what Jaron is doing but I haven’t shared too much about the children.  When the news came out, the children all handled it differently.  My 12 year old held a lot of it in.  My 10 year old threw his emotions everywhere.  Most of them were angry.  It was hard to have him be so emotional all of the time.  My six year old was very social and wanted to tell everyone about it.  Luckily, the kids seem to have calmed down and returned to normal since the surgery.  I owe that a lot to my mother.  I often say she has perfected the art of mothering.  She is also very wise.  She is as good or better than counseling.  She has talked a lot to each kid and I feel like that has helped.  They have also had a lot of fun time with cousins, and I think that helps too.  So, all things considering, I think they are doing pretty good.  Kids are strong and a little naive.  They also bring a lot of strength to us.  My six year old keeps saying, “Dad, you are going to make it through.”  I am sure her innocent faith will bring down heaven’s blessings.  Jaron likes having the kids around.  They bring him a lot of comfort.    

We are excited for Thanksgiving break.  We had a pre-thanksgiving dinner with my family last week.  It was great to have them all around us.  Jaron even made the mashed potatoes.  Tomorrow we will be with Jaron’s family.  It should be a good day.  We have so much to be thankful for.  When we were at church on Sunday, I looked around at all the people there.  I felt so much love for all of them.  I know they have been praying for us and doing acts of kindness for our family.  My heart felt full of love and gratitude to them all.  And I feel so grateful for all of you.  You prayers and support are some of the greatest blessings in our lives.  Thank you for helping us during this difficult trial.  We are so grateful for family, friends, good days, and most of all, our Savior.  We are grateful for His guiding hand and loving support.  We feel very blessed.  We hope you all have a nice Thanksgiving.  We love you!

Joni     

What a Roller Coaster Ride!

What a roller coaster we are on!  And I don’t even like roller coasters.  Last week things seem to be going ok.  Jaron was recovering well and it seemed the worst was behind us.  Then Thursday night, as I was putting the kids to bed, Jaron started complaining about a headache.  He normally has had pain just where the incision was, but this pain was his whole head.  I gave him a full dose of pain meds but an hour later, it was still so bad.  So I called the on-call doctor and he said to give Jaron another dose of pain meds.  I did that and he still was in alot of pain.  We decided to go to the emergency room.  As we drove, Jaron became so nauseous and was in so much pain.  I was so worried about him.  As we pulled up, I could hear Brian Reagan’s sketch on no valet parking at the emergency room.  “You go in.  Tell them you’ve been shot!”  If you haven’t seen it, look it up on Youtube.  You will love it.  Anyways, we pull up and I go in and tell them we need a wheelchair.  They came out to get Jaron and he could barely get out of the car.  He was green and pale and clammy.  He looked terrible.  They quickly got us into a room and put Jaron on a bed made for a 5 ft woman weighing 100 lbs.  It was so uncomfortable.  During this journey I have felt bad for myself.  This has seemed like a hard trial for me.  But seeing Jaron so sick, I no longer felt sorry for myself.  I realized that what I have been asked to do is not even close to what Jaron has been asked to do.  My big, strong, healthy husband has to be sick, and weak, and in pain.  Boy, it is hard to watch him be like that.  I cried a lot because I felt so bad for him.  Well, after two doses of nausea medicine and two doses of pain medicine, the pain calmed down.  They did a CT scan and everything looked ok.  We decided that it was because Jaron went off the steroids too early and his brain was swelling.  Thankfully they sent us home.  That was the most miserable experience.  We were so happy to be home and in our own bed.  I gave Jaron some steroids and we went to bed.  After a few hours sleep, we got up with the kids and were grateful that Jaron’s headache was gone.  We sent the kids off to school and went back to bed.  

My mom, who is constantly the heroine of this story, decided to take the kids for the weekend.  She loaded them up after school and took them to her home.  She lives by my sisters so my kids got to spend the weekend playing with cousins and being loved by grandma.  It gave Jaron and me a lot of quiet rest.  It was so lovely.  We napped and watched movies.  We went on walks and worked on his speech therapy.  I was so rested by Sunday evening.  It was the greatest weekend.  

Almost from the beginning of being in the hospital, Jaron’s feet and legs hurt.  They have felt very stiff.  Walking has been painful for his feet.  We talked to the doctor last week and he explained that sometimes during surgery, blood will get in the spinal fluid and settle in the lumbar system which will then cause pain in the feet and legs.  We were told that it would go away.  Well, it seemed to get worse.  Walking was very painful for Jaron.  We applied heat, did massages, warm baths.  The pain just kept getting worse.  By Monday night Jaron was in so much pain, he couldn’t sleep.  We had doctor appointments Tuesday so I called ahead and said Jaron was in alot of pain.  They said to come in and they would check him out.  Just getting to the car that morning was excruciating for Jaron.  He said it was the most pain he has ever been in.  Well, watching him in so much pain, and preparing myself for doctors appointments to talk about CANCER, had me in a really emotional state.  I cried most of the drive down.  I missed our exit and then the next one.  I almost rear ended someone.  By the time we got there, I was already saying it was a terrible day.  Jaron tried to walk to the appointment but he couldn’t so I got him a wheelchair. (Turns out I am as good at pushing a wheelchair as I am at driving a car.  I almost dumped Jaron two times!)  We showed up to our appointment 15 minutes late.  The first thing they wanted to do was to hear about Jaron’s leg.  They feared a blood clot, so they decided after the appointments, we would get a scan of his leg.  Then we got down to business.  Jaron will start radiation in about a week and a half.  He will do radiation Monday thru Friday for six weeks.  This can cause a lot of fatigue and swelling.  The swelling can cause the communication issues to come back but should get better once radiation is done.  After meeting with the radiologists, we then met with the oncologist.  There was a lot of talk about Jaron’s tumor.  His type of tumor, anaplastic astrocytoma, has different categories.  The mutated kind is the good kind.  It responds well to treatment and can stay away for 20 years.  The first initial tests say he doesn’t have this kind.  We have the kind that comes back and when it does, it might be grade 4, the glioblastoma.  It was hard news to hear.  We will most likely beat this tumor.  It is just hard to know that we will have to keep fighting tumors to keep Jaron around.  Jaron will do chemo at the same time as radiation.  He will take a chemo pill every night along with nausea medicine.  He will do this for six weeks.  Once that is done, he will take a four week break.  Then for six months he will take the chemo pill for five days out of every 28 days.  Once he is done with that, they will do scans and see if the treatment was successful.  There are lots of bad side effects but some people do fine with it.  So we will see how Jaron does.  

After leaving those appointments we went to the University hospital and did a scan of Jaron’s leg.  They found that he has a blood clot from the top of his thigh to the bottom of his foot on his left leg.  Jaron’s leg isn’t really swollen and red so it didn’t have the normal signs of blood clots. But sure enough, it is completely filled with them.  They sent us home with shots he has to do twice a day.  The shots stop the body from making more of a blood clot.  Then, the body absorbs the clot over the next few weeks.  There is a risk that the clot will break off and go towards important places like the heart or lungs.  There is also danger of his brain bleeding where the surgery took place.  Jaron says that this pain is worse than after the surgery or when his brain was swelling.  He can’t even walk on it.  He feels relief if he has it elevated but once he tries to walk, he can barely stand it.  Poor man.  I wish there was a quick solution for this one but we just have to wait for the body to dissolve it.  

So this roller coaster has given us some really hard times but some calm days.  I am learning to live one day at a time.  I used to be such a planner.  Now it is hard for me to make plans for tomorrow.  I always loved mindfulness but struggled to apply it in my life.  Now I am getting a good education of living in the moment. I am learning to endure the hard things happening right now.  I am also learning to see the good happening right now.  And there is a lot of good.  So many of you are blessing our lives.  My heart often overflows with gratitude at all the kindness being shown us.  Thank you for blessing our life.  

I ran into a friend the other day.  She commented that when she reads this blog, she often thinks, “If I was going through this trial like Joni, I hope I would handle it like she is.”  I thought that was very kind of her to say but I assured her that she would handle it well.  I am nothing special.  I am making mistakes and having bad moments.  But I have learned through other trials that leaning on the Lord is the only way to make it through these hard times.  I used to really beat myself up when I would hear other people’s trials and they were so much bigger than mine.  I would wonder how they could handle such a big trial and I couldn’t handle something small like a grumpy toddler.  A wise counselor taught me to not compare trials.  She said comparison is the thief of joy.  She said instead of comparing, I should be inspired.  She said to look at others and see that by relying on the Lord they were getting through some really hard things.  I could then apply that to my life and learn that by relying on the Lord I could get through whatever I was asked to do.  This life is hard.  Everyone has trials.  But I truly believe that the Lord will help us through all of them.  He has helped me continue on when I want to sit down and throw my hands in the air.  He comforts me when my fears of the future seem too great.  I am so grateful that he has helped me through so many trials.  He has been there through my many miscarriages, through my struggles with anxiety, through losing my dad, and now through caring for my sweet companion.  How grateful I am to know my Savior and to have Him by my side.  Without Him, this trial would be more than I could bear.  What a blessing He is in my life.  So take heart.  What you are going through is hard, too.  But you are not alone.  And know I love you for reading about us and sending a prayer to heaven in our behalf.  Thank you.

Joni

It Was the Best of Times, It Was the Worst of Times

It has almost been a week since Jaron’s surgery and he is recovering well.  We have been home since Monday, which has been so nice.  The hospital is exhausting.  All the activity makes sleep hard to come by.  Since Jaron is so tall, his feet always hung off the end of the bed.  This made him quite uncomfortable.  So we were thrilled when they said Jaron was doing so well that he could go home.  Before leaving, we spoke with his neurosurgeon, Dr. Jensen, and he said Jaron was a week ahead of where he thought he would be.  His language was doing so well and the doctor was pleased with Jaron’s progress.  This was so encouraging.  We met with the speech therapist and they said Jaron has aphasia, which mostly deals with word finding.  Words, specifically names, are difficult to find.  But with a little bit of therapy, he should gain that all back.  The doctor also said that the optic nerve was being bothered by the swelling in Jaron’s brain, which was causing his vision to struggle. This would hopefully calm down soon and Jaron would get his vision back.  So we left the hospital encouraged that Jaron’s healing was ahead of schedule and all concerns would work themselves out.  

When we got home, Jaron walked straight upstairs, climbed into our king sized bed, and stretched fully out.  For the first time in days, he could have his whole body on a bed at the same time.  He slept for a couple hours, taking up all the space in the bed.  I wasn’t sure where I would sleep at night, but I was ok with that.  It was good to see him comfortable.  Being at home has been nice. Jaron is getting good rest.  He is eating well.  We go for walks.  He gets to see the kids more.  We are glad to be home.  It has also been so nice to have my mom here.  She works with the speed of a superhero and the endurance of a 20 year old.  My home is cleaner that it ever has been and my laundry is always caught up.  She is also an emotional strength.  What a blessing she is!  

At the hospital, the doctor had told us to expect a call with results on Wednesday, which was yesterday.  I had dreaded this phone call because I didn’t want to hear the bad news.  I was still on cloud 9 with how well Jaron was doing.  I didn’t want that to be dashed.  But the time came, the doctor did call, and it wasn’t good news.  Jaron has stage 3 Cancer.  His tumor is called Anaplastic Astrocytoma.  This tumor is a grade down from the glioblastomas his mom has and his sister had, but it is still not a good one.  He will undergo treatments like chemo and radiation.  This can be an aggressive tumor and may come back.  I am devastated.  This is not what we wanted to hear.  I keep replaying the conversation we had in the hospital right after surgery.  Through his grogginess of anesthesia, Jaron would ask about his tumor and I reassured him it didn’t seem to be a bad one and he would say,  “So I don’t need to worry?” and I would lovingly tell him, “No, you don’t need to worry.”  I am glad I calmed him down then, but we did need to worry.  We are now in the battle of our lives.  There are many hard days ahead.  And we don’t know the outcome of this.  My heart aches.  I keep quoting The Santa Clause, I want to “lash out irrationally.”  I want to scream and cry and pull the covers over my head.  But life doesn’t allow that.  Jaron needs me to take care of him.  I have 3 children to love and care for, so I put on a brave face and keep going.  Jaron is just truly being brave.  He says he doesn’t really feel any emotions right now anyways.  He doesn’t smile or laugh, so he doesn’t seem too upset.  But what he has said are all positive words.  He wants to fight and win this.  I truly hope he does.  I want him around for a long time.  I need him in my life.  My kids need him in our lives.  I hate cancer!  I never, ever thought this would be our path.  But here it is in front of us and we must take the road ahead, so forward we go.  

When we were at the hospital, awaiting Jaron’s surgery to get over, my brother JB and I got into a discussion about God.  He was preparing for a future conference presentation on the nature of God.  My brother is a religion professor.  His topic was along the lines of is God involved in our lives or does He watch from a distance, allowing bad things to happen.  We both agreed that we think God is a loving and involved God.  He wants to help us.  He wants to be there for us.  Hard things happen to help us grow and to draw us closer to Him.  He doesn’t necessarily cause bad things to happen, I think that is a part of the human experience.  I think He allows it to happen because He knows that during the hard times we can really grow and become the person He wants us to become.  I also think we agreed to these hard things before we came to Earth.  I think we were told some of the things that would happen to us in this life, and I think we enthusiastically agreed to do them.  I think we were excited to come to Earth, to endure hard things, and to show God that we would follow Him.  The best part is God didn’t just send us to Earth and leave us alone.  He gave us so much help.  So even though we are going through maybe the hardest trial of our life, He is blessing us and comforting us.  He has surrounded us with so many angels, both seen and unseen.  I don’t know how we will get through it, but I know we won’t be alone.  Thank you for being some of those angels.  Thank you for sending your prayers to heaven.  I know we are being blessed by your faith.  I love you for that.

Joni

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