So you had a bad day....

It's been a bit rough these past few weeks.  We haven't sent many pictures to update Jasons Journey on Facebook because really we figure no one wants to see or hear about all of the yucky stuff. But that being said it's part of the journey and I have chosen to share it because as I've thought about how to write this it's helped me. It's helped me to keep in perspective that life is hard on ALL of us and maybe by sharing this someone might not feel quite as alone as I have felt this past month or so.

First off Jasons health is pretty stable right now. Every couple of days or so he gains a pound and that new weight is something we've never seen. But along with this new blessing of increased health has come some new and different challenges I could have never for seen coming. 

When Jason first found out about his cancer he fought everything! After his surgery and before chemo and radiation started all he wanted was to be back in school with his friends. I knew he wasnt physically well enough to be there but his will was so strong that I'd send him.  It usually went that he'd be there until about lunch time and he'd end up asleep on the couch in his class room or so tired that his teacher would call and ask me to come get him. I'd usually find him in the office at school talking to the office ladies.  His balance, coordination and speech had all been affected to one degree or another and regular activities were very exhausting for him.   His routine at school continued on and off until the nausea got the better of him and he couldn't go to school anymore.  During chemo and radiation he lost control of his bowels for a time and after one perticular bad outing at cub scouts he started withdrawing from public outings.   But the desire to get better and be part of his age group and friends was always very strong. As things improved after treatment his body had been through so much that most days it felt like he and I would push that body until it couldn't do any more.  After high school graduation he talked of moving out and moving on.  Even though we could all see that there were new challenges popping up all around him.  His body and mind were fighting against each other and it was only a matter of time before someone would have to give in.

This past year with his health and mental issues, it's felt like we finally saw who gave in.  It's been a set back in my opinion seeing his body out weigh his physical desires.   Watching him waffle around the 80 lb mark and what poor nutrition has done to him both physically and mentally has been heart breaking to say the least. 

But  I am just his mother. I have no medical training whatsoever and most if not all of the ups and downs he's had health wise have been new to me.  Many times I've been at a loss to know how to help him.  I have fought with many a doctor over the years.  I'm not the best communicator and there have been many times this short coming has, I felt hindered Jason.  It's hard trying to advocate for someone especially when you don't really know how they are feeling.  For instance I could see that he wasn't eating, but I didn't know and I had no idea that he was in pain.  I had been told that your taste for food changes after radiation, but how much it did for Jason and how it affected him and wanting to eat, I had no clue.  

I had a doctor once tell me when Jason was in 8th grade that " sometimes people are just broken, & we can't fix them".  This statement has frustrated me to no end.  I am not a quitter but when he said that in front of Jason I worried how that would translate in his head.

Jason is NOT a quitter, but he is facing some hard and difficult realities.  He's finally building up the physical endurance to be able to do more.  But he's also fighting his mind and the toll that all he's been through has put on him.  He has extreme anxiety and depression.  Some days he feels mentally like he can fly, and then there are the hard days where no amount of pushing or encouraging can help.  He is in the depths of despair and feels trapped.  He worries like all of us about his future. He gets caught up in the years of being told he's broken and "un" fixable and the self doubt.  He gets angry and mad at his family for "moving on".  Remember his siblings were all so much younger when we started this journey.  He's been dealing with hard things for such a long time.  I feel for him for I feel like Jason and I have always had a good relationship.  I know the dreams and wishes that he feels have slipped away.  But I also know how much he's overcome.  For every "you can't" he's countered with, " really, watch me".

He was the boy who wasn't suppose to regain his speech, his ability to walk, tying his shoes, riding a bike or swimming, he was never to be able to do those things.  But he never gave up, he never quits.

I'm grateful for people and places that our family has been able to turn to, to try and find peace and healing.  I know there are many rocky days ahead but I'm still hopeful.  I hope my son will be able to find that inner strength and desire again.

I hope he will be able to see what I do...but like most of us...durning the struggle we tend to lose sight.....that's where we are right now as a family.  The hills seem high, and we aren't sure what's on the other side.  We are tired, we are weary, we are longing for peace.

I have on my fridge this saying:

It's hard right now when the one bad day has turned in to many bad days.  It's hard to not want to quit.  In our family lately the stress of so many rough days are taking it's toll.  But that's for a different post.  I just hope that there are still people out there praying with me and for me to do the right things.  That they'll keep praying for Jason.  Keep praying that through all of the muddy waters he's going through that he'll find his way.  That he won't ever quit and that maybe given some distance and time he will be able to look back on all of this as just a bad day.  

Saturday Therapeutic Horseback Riding

Jason is back in the saddle!!

Today, Jason rode Sammy again for the first time.  He looks SO much better and had so much more strength today than he did on his last ride:  

Walking Sam to the arena

For those of you who may not know, therapeutic horseback riding is sort of a mix of physical, occupational and speech therapy.  (Hippotherapy is this sort of riding administered by either a physical, occupational or speech therapist).  Jason had all three therapies while he was still going through cancer treatments, and then for a while after that.  The benefits to therapeutic riding are ENORMOUS.  

A quick break-down:

Gross-motor benefits: riding strengthens your core, stretches and strengthens your legs and builds balance.  It takes a strong person to handle a 1200 lbs animal!

Fine-motor benefits: grooming a horse takes fine and gross motor coordination.  The buckles (called billets on an english saddle and latigo on a western saddle) on a saddle require fine muscle coordination.  Reining (either neck-reining, done with one hand, or direct reining, done with two hands) takes a lot of fine motor coordination and planning.

Speech benefits:  riding gives the student something to share with other people and helps them break out of their comfort zone.

Cognitive benefits:  Horseback riding is a full body and a full brain workout.  You have to plan where you will ride next, pay attention to what your body is doing and how you are speaking to your horse through body position and reining.  As you move to faster gaits (walk, trot, canter, gallop) you may have to post (when trotting) or be aware of which lead your horse is picking up.  

And, no offense to any physical or occupational therapists or speech-language pathologists (you guys are great!) out there, but horseback riding is so much more fun than regular therapy!

Jason's Day:

Jason's teacher is Peyton; she has been teaching therapeutic riding for many years and is one of the very best in the business!  She is so compassionate and she knows all the ins and outs of what she's teaching!

They started with grooming Sam:

Picking out Sam's feet

Then they got the saddle on:

      That's an English saddle :)

Want to go for a ride?

Jason then walked Sam down to the indoor arena (it's hot outside!) and his lesson officially began!

Getting set up

Jason stayed on a loose lead for the first few minutes of his lesson.  Then Peyton put Sam on a lunge line so Jason could work on stretching and warming up.  This stretching is good for any level rider to do.  But it is especially helpful and gentle on Jason's weary muscles.

Horses give you wings!

Jason also worked on a slow trot (called a "jog") while on Sam.  In the picture above you can see Sam has his head lowered.  He is a really special horse; he can be ridden in an english or a western saddle and can both neck and direct rein.  His lowered neck is part of his western "jog" and his jog in particular is a smooth and wonderful gait to ride!

Then it was time to go off-lead:

Talking Jason through a two-point; this is the position used when jumping but is great for building balance and leg strength

Let's ride!

Jason did GREAT on Sammy today, he practiced steering, trotting, and overall just looked so great with Sam!  He played "tip the cow", where he had to steer Sam and run over cones all over the arena.  It took skill and he got every single one!  (that's what he's doing in the above pic!)

Jason rode for over an hour total, which is so impressive considering all he's been through.  It was so great to see how far he has come and to be reminded once again of how much he can really do.

This is Jason at the end of his lesson.  He is running his stirrups.  You do this with an English saddle; basically you run the stirrup irons up to the seat of the saddle so they don't bang against your horse's side when you walk back.

Good job buddy!

At the end of his lesson Jason also helped hose Sam down (gets the sweat off so the flies won't bug him!) and then walked him back to his stall.

It was such a wonderful morning; it was just another example of the wonderful friends we are surrounded by and all the people willing to help Jason.  Peyton has taught me in riding as well, and we worked together for a while.  I've learned a lot from her in a lot of ways and she is really the best at what she does!  We are SO grateful to her and Sam for all they've done for JJ!  Jason will be riding weekly and I know this will help him regain his strength and grow so much!

If you have more questions about therapeutic riding feel free to ask in the comments or message me on Facebook.  I could talk about horses and horseback riding for hours!  I will continue to update Jason's progress through this blog however, so check back often!

Top of the Muffin to ya'll!

-LeAnne




**P.S. speaking of asking questions, I added a new link to Mormon.org to our blog; it's a profile I filled out with more information about the church my family and I belong to, the Church of Jesus Christ of Latter-Day Saints.  It is a huge (defining really) part of our lives and who we are.  Just more information for anyone who's ever been curious.  It's also another topic I love to talk about so don't hesitate to ask me if you have questions, or share that link with a friend who does :)

The Windkist Brothers

We interrupt your regularly scheduled blog for this special announcement....

The Windkist Brothers have arrived!

Not to be confused with the Winchester brothers:

Sam and Dean Winchester - "Supernatural"

Dean (Dean-O) is LeAnne's boy, and a future therapy dog.  Sam (or Sammy, Samuel, Sam I Am or Moose) will stay with Jason and the family.  He's already helping out the family:

They are growing up fast, and making lots of friends:

          Daisy looks out for the boys :)

And they have big shoes to fill:

This is Darwin, this picture was taken at one of Jason's appointments.  He came to every appointment he could (assuming it wasn't too hot or cold for him to be in the car) and even made the trek to the hospital in February so our Mom could take a break and come get some puppy love.  He became part of our family shortly after Jason finished chemo treatments and was a huge part of our family finding our own "normal".  He is sorely missed. <3

                 Always with you :)

           Darwin and Daisy, best buds :)

The boys finished their big-kid shots today, and we are so grateful to hear the pitter-patter of little paws and the jingle of collars all through our house and backyard again.  There really is nothing like puppy love to help you feel better:

"You can easily judge the character of a man by how he treats those who can do nothing for him"

Go hug a puppy today :)

Top of the muffin to you!

-LeAnne

Update from the long-lost blog :)

Hi!!

So sorry for the long gap between blog posts, I've been a little busy!

Just a quick update for now on Jason and how he is doing:

First, we want to thank these guys again:

Jason with Divine Comedy

And all of YOU for coming out and supporting him!  The fundraiser was very successful and all of the funds have gone to help pay off Jason's medical bills.  THANK YOU for all of your love and support, and to everyone involved with putting on the the performance (including but not limited to Divine Comedy, the Lone Peak Stage Crew, and everyone that helped with ticket taking and orchestrating with Lone Peak, you know who you are!!! :) )

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Jason had a doctor's appointment today!  He see's a doctor that goes by "the gut-whisperer" in South Jordan, UT.  I'm starting to believe that this term is really accurate.

We are leaving the NG tube in for another 3 months and will re-evaluate at the end of that time.  We do want to get the tube out at some point but there has been a fear that if we take it out too soon Jason will relapse and re-lose all the weight he has gained.

Jason's doctor also added an appetite stimulant called cyproheptadine.  The goal is to continue to get him to eat more on his own so when we do remove the tube there won't be a huge calorie deficit.

We are also happy to report that Jason is the heaviest he has ever been (we can say that everyday now yay!) weighing in at 108 lbs.!!  He is also the healthiest he's ever been.  Whenever Jason would have lab work done he would always come in at the low end of normal, or just be really low.  He is still on the low side, but not like before.  His numbers are moving up slowly and he is finally headed in the right direction.

We are still investigating the cause of his illness.  Jason had a colonoscopy done about a month ago and they discovered significant scar tissue and removed two large polyps from his large intestine.  There were no signs of cancer, but we are one step closer to hopefully getting some definitive answers (and solutions!) to Jason's mysterious health problems.

Thank you everyone again for all of your love and support during this journey.  The hard part about cancer is it is a long-term challenge, and we couldn't do it without all the prayers and support on behalf of Jason and our family.  I'm working on finishing a couple of blog posts that I started, I've been sick myself recently and had a few other exciting things going on but I promise I'll get back on track!

Top of the muffin to you!

-LeAnne

No Man Is A Failure Who Has Friends..

Thank goodness school is finally Over!!! I'm not exactly sure why this year has been SOOO long, but I am sure glad it's over! This past week at our house has been a very laid back one.  School, stress, anxiety and all we've been through has taken it's toll. Last weekend I was really sick. Although my doctor still wants me to have a few more tests run, I'm sure the anxiety and stress of these past 4 months finally caught up to me. 

As I'm writing this my youngest son is still nursing the "barf bowl" by the TV. Having everyone home again will be nice. Jason loves it. He says it gets "too noisy" and that he just likes spending time with just me (he's a good son :)), but I know he loves having them here.

 I noticed on our blog that we haven't really updated everyone on Jason's health. LeAnne is the usual writer of our blog and I saw that she has a couple of drafts she's working on, she's been incredibly busy with her new job and is dating a really nice young man. So her time for writing is very limited. I am very happy for her. She is always trying to better herself, (she gets that from her Dad), and even though she has a bachelors degree, she's decided to take on nursing school to become an LPN. She will be great at this. She loves to help others and seems to find it very rewarding working in the medical field. So, I will update you all on what's new with Jason. :) 

 At the end of April, Jason underwent a colonoscopy in which the doctor found and removed two very large polyps. As we waited the two weeks for results, we made an impromptu trip to California to see my Grandma and we also squeezed in a few days at Disneyland. (It was an early Mother's Day present, surprise for me from Jason and LeAnne. I'm a pretty lucky Mom I tell ya!) When we got home, we were happy to find out that there was NO cancer in his colon. I was SO very relieved to get this news it almost overshadowed my going to Disneyland! (What? Impossible!? :)) After this good news, we continued working on Jason's physical therapy. Trying to eat more throughout the day and still using the feeding tube. Jason's doctor is hoping that the increase he made in Jason's pancreatic enzymes will continue to help him and that there is a possibility that Jason might be able to be 'tube free' after the 4th of July! Talk about a great 'Independence Day'. 

 His feeding tube still clogs on me, but I was given a nifty little wire to use to help unclog it when it does by the doctor that put the tube in. I still keep it flushed regularly and do so during the night since that's when his feedings are. The tube has been giving Jason some problems with acid reflux issues because the tube keeps that valve open. But the nausea and pain he had been living with is all but gone. Jason also hit and passed the big 100 lb. mark!

He is now 5'5" and weighs a whopping 104lb!! Just like with dieting when you are trying to lose weight you hit a plateau, you do the same when trying to gain weight. When he hit 100 lb, it seemed like that scale would never move. I would love for him not to have to rely on the feeding tube anymore, but I still worry that his body won't be able to maintain the calories and nutrition he needs without it. Thankfully, our doctor worries along with me so that's a good sign. 

Today Jason had the opportunity to speak at the Heritage Ward at the Charleston in Sacrament meeting. I was so super worried for him. This past year or so we've watched and saw a steady decline in his cognitive abilities. This would be his first time speaking in a public setting like this in almost 8 years. Before we left to go, Jason commented to me that "You worry too much". Hmmm, you might be on to something!! Needless to say he gave an wonderful 5 min talk on Enduring our trials.

Jason has been riding a bit of a 'high' this week. One of my good friends helped to organize and get players from BYU's Divine Comedy to put on a benefit concert for Jason. It was last night at Jason's old high school. Jason was both nervous and excited for this event. Before we went over to the concert, Jason told his Dad and I how he wished that he was part of the group that was helping someone, rather than being the one being helped. He has never felt comfortable having the spotlight on himself. When he went through cancer at ten years old, this was a big part of the 'hard' things that he and our family dealt with, and why we had such a hard time reaching out to very many people for help. 

Jason and Aaron and I have dealt with different feelings over letting people help us. I won't speak for them on their feelings, but I feel the same as they do that it is SO hard to ask others for help. It's even harder when you ask and then are told no. But that is a topic for another day. :) 

 Before the benefit I stood to say a few words of "Thanks" to all of the friends and neighbors that had come. I was shocked to see so many! I was told later that there were over 400 people that came last night. I don't remember everything I said, because I was so overcome with the emotions of seeing so many people there. It was very humbling. I remember trying to express my appreciation, but I'm sure my words did not convey how much seeing everyone meant to me. 

 I told all of our friends how before Jason had been in the hospital my bishop had asked if I wanted a blessing. I said yes of course, and he gave me a blessing that I think of often. Part of what he said to me was that "I would be blessed by many on both sides of the veil working and helping me and my family, and that you are not alone". As I stood on that stage I felt like I was George Bailey at the end of "It's a Wonderful Life". You know the part I mean. As George stands in his living room and all of his friends and neighbors start pouring in to his home to help him. I now know what that feels like, how overwhelmed with emotions he must have felt as he watched so many people come in to his home. I couldn't help think "what have I done to have such an out pouring of support for my family". 

Because I know of my many short comings this humbled me even more, I'm so grateful that so many haven't given up on me or Jason. That through their examples of the pure love of Christ I'm still learning and wanting to do better. My friend that helped with all of this would tell me over and over that what she was doing 'was nothing really', "you'd do it for me". I'm grateful to her for having that kind of faith in me and I know that this saying is so true: "No Man Is A Failure Who Has Friends".

 Thank you again to anyone that is reading this that came last night. It means so much to us. Between this fundraiser and the Taco night, Jason will be able to take a big chunk out of his medical bills. But more importantly, Thank You for being there and supporting him. I watched as his eyes widened at all of the people there that were applauding him as he stood before everyone. It gave him strength and helped him feel so much love. More than the financial help Aaron and I are grateful for that moment.  

We love you all so much and are so grateful for all the blessings that we have been given. Thank You, Thank You and Thank You!!!!

Super Soldier: Disneyland Part 2

Hi!

I started this one a while ago too and am just now finishing.  Thanks for your patience!

Disneyland part 2.....

Jason LOVED the rollar coasters at Disneyland.  One of his favorites was Big Thunder Mountain.  Since we rode this so many times, I got a good look at some of the names of the trains:

I. M. Brave

I.M. Fearless

U. B. Courageous

It seemed really appropriate that this was Jason's favorite ride, since he is all of those things :)

We also stopped at a pretty sweet 'gas station':

This is "Oswald's".  The slogan is "Service with a Smile".

Oswald is (aside from Mickey Mouse of course) my favorite Disney character.  Oswald was Walt's first creation.  Walt only had Oswald for a few years.  When he and Ub Iwerks were pushed out of Universal, they lost their entire animating staff and Oswald.  Walt was devastated.  

It would be almost 80 years before Oswald the Lucky Rabbit was reclaimed by the Disney family in 2006.  In the meantime, you could say Disney did ok for himself.   

This legacy of perseverance shows in all of Disney's films, cartoons and most of their characters.  Disney characters aren't without flaws.  Mickey Mouse is clumsy and frequently gets into trouble through nobody's fault but his own.  Oswald is much the same and has a bit of a grumpy streak.  And neither of them are really that lucky.  But they always keep trying.  

They are heros:

A little Goofy:

And they do scary things:

    *The tower of terror, not for wimps

Sounds a little familiar eh?

People have asked both Jason and my parents how they keep going, what's the secret?  They always respond: how could we not?  Sometimes you hunker down and rest for a minute, but you never give up.

Time will pass no matter what, but ultimately we are the ones in control of how that time passes.  It's up to us to decide how we treat others and where our lives are going to go.  We can't always control what life throws at us, but we can control how we respond.

"It's kind of fun to do the impossible" -Walt Disney

I was really impressed during out trip at how kind everyone was to Jason.  We used his wheelchair the whole trip because Jason was still really weak at that point.  The staff at Disneyland never missed a beat, and Jason was able to enjoy the trip just as much as he would have if he'd never gotten sick.  We had help wherever we went.  We really were surrounded by "service with a smile".

I suppose that's what I appreciated the most about our trip.  No one treated Jason like he was in a wheelchair and on a feeding tube.  He was just another person on vacation.  How beautiful a world it would be if we could all see past each other's outside appearances.  How much kinder would we be to each other if we could really see the struggles we are all facing?  If we could all remember that everyone is someone's son or daughter, father or mother, sister or brother.

On the outside, we may be small like a mouse or unlucky like a rabbit.  People might only see our scars and weaknesses.  But on the inside we all look a little more like this:

    Jason Franke, super soldier :)

If there's one thing I hope everyone reading this blog can take away from Jason's Journey, it's to never give up.  You are worth it!  You are not your trials and weaknesses.  You are writing your own story; you can't control all the plot twists but you do get to control how you respond to them!  We were made to act, not to be acted upon.

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Jason's health is still improving, he is finally healthy enough to be getting back in the saddle this Saturday!  I'll post pictures after his lesson.

This is your before pic, watch for the after :)

Top of the muffin to yah!

-LeAnne