So...What's going on?

Hello friends and family of Jason Franke,

This blog was started to help keep our friends and family informed of Jason's condition.  Many of you who know Jason know that he is very quiet and always puts the needs of others before himself.  This soft heart and gentle demeanor has been forged through many trials.  We have been so blessed to have legions of friends help us through said trials.  In an effort to help share Jason's story this blog was created.

The Shorter Version (or Up to This Point):

As many of you know, Jason was diagnosed with Medulloblastoma (a form of brain cancer, for more information go to this website from the American Brain Tumor Association http://www.abta.org/brain-tumor-information/types-of-tumors/medulloblastoma.html) in February of 2004.  He was ten at the time.  A year later, in May of 2005 he was declared cancer free after undergoing brain surgery, radiation therapy and many rounds of chemotherapy along with several other procedures along the way.  Unfortunately cancer doesn't end with the last chemo-rounds and post-cancer scans.  The treatments to kill cancer cells, especially at that time, were really a poison that while effective at killing cancer also left their mark on the surrounding cells.  For ten years we've lived in a post-cancer limbo as Jason's body has tried to catch up and recover from this devastating illness and treatments.  No one explains to you that cancer is not a short-term illness.  In your efforts to be positive you think "the tumor is gone, now life will go back to normal".  But in reality this is not so.  Your loved one is different, life is different and cancer tends to hold on even after it is gone.  This is what we've found with Jason.

For years JJ has struggled with his weight.  In spite of everything he's done, and all the therapies and post-cancer treatments he's been through he has never in his life broken 100 lbs.  We've looked long and hard to try and understand why his body just seems to want to constantly loose weight rather than hold onto it (like the rest of us) and grow.  We've consulted everyone from GI specialists to the Center For Change to internet bloggers touting fattening home-cooked meals.  We've investigated psychological as well as physiological reasons for his inability to gain weight (literally everything from eating disorders to missing enzymes) But every test just seems to raise more questions and more head-scratching from the medical community.  This has taken it's toll on our whole family as we've struggled to understand this bizarre post-cancer world.

Everything sort of came to a head two weeks ago.  Jason had come home complaining of a bizarre black out spell at work and was dizzy and having trouble breathing.  We took him to an instacare where they did some basic blood work and ruled out that he had any kind of viral or bacterial infection.  We were told to follow-up the next day with his regular doctor.  So we did.  I do feel a need to say that perhaps the most helpful doctors we've had to this point have been Jason's pediatricians at Alpine Pediatrics in Lehi.  During our appointment that Friday we determined that the source of Jason's problem was poor nutrition and he needed to be seen again by a gastroenterologist and we needed to start aggressively attacking this problem with his weight.  Now, one of the struggles we've faced with Jason's doctors has ironically been the "do no harm" part of their oath.  As a general rule Jason can look as sickly as you can imagine but his blood-work and other tests all seem to come back normal.  So his doctors have tended to take a 'wait and watch' approach to his health with the idea being that things are normal enough for now, we don't want to make them worse.  As a family we've been extremely frustrated by this but what can you do when doctors shrug their shoulders and say "we don't know"?

After this visit our instructions were to push electrolytes and fluid (Jason's sodium levels and a couple of other electrolytes came back low on his CMP blood test) and make sure we got to his appointment with the gastroenterologist that coming Tuesday.  Please understand that we've never not been trying to figure this problem with his weight out.  We've slowly been working our way through doctors along the Wasatch Front but up to this point we just haven't found one that can crack the case yet.  

All of that sort of got chucked out the window Sunday night.  Jason's speech starting slurring and he was sleeping all day.  He seemed very out of it and his appetite was at an all time low-even for him.  His sister LeAnne took his vital signs and determined that they were at the very low end of normal.  We headed for the emergency room at Utah Valley Regional Medical Center.

Jason was initially admitted due to a spot on his brain in a CT scan.  It looked like a sign of a stroke.  This came as a surprise to us.  We knew his weight was a problem but news of a stroke was (naturally) troubling to us and we prepared to meet both enemies with guns a-blazing so to speak.  But, and as terrible as this sounds, the spot turned out to be a blessing in disguise because it got the doctors attention and got us admitted to the hospital.  

After the first night in the hospital and multiple tests a neurologists met with us and told us the spot (that was the technical term used by all medical staff involved by the way) was an old lesion on Jason's brain and that there was no new neurological damage (strokes included).  He confirmed what we already knew; Jason was exhibiting signs and symptoms of severe malnutrition.  As he put it, JJ's body was out of gas and running on less than fumes.  Our next appointment was with a GI doctor.  The GI doctor we had an appointment to see was part of the network at our hospital and had actually recommended that we come down when Jason's condition worsened.  We'd been working with him for a couple of months and we were considering at that point an NJ feeding tube to try and help Jason gain weight.  At this point we felt that that was probably our next course of action as we had literally tried EVERY other avenue to try and help him gain weight.  

We met with the GI doc the same day as the neurologist.  After a frustrating visit we finally agreed that an NJ tube (a feeding tube that inserts directly into his small intestine: http://www.chop.edu/service/radiology/interventional-radiology/nasojejunal-nj-tube.html) would be the best thing to help Jason get better.  This took some foot-putting-down and outright "no, LISTEN"s from our family as once again our doctors seemed to be listening to Jason's "normal" tests rather than us and our ten years of struggling.  I can't tell you exactly why doctors do what they do but I will say on that day it was UN-BE-LIEVABLY frustrating to be on the other end of it.  And this was no picnic for our family.  Early in Jason's cancer treatments, a well-meaning but socially challenged nutritionist had actually used a feeding tube as a threat to get Jason to eat.  To a ten-year old that is a very scary thing.  Now years later those threats came back like some ugly echo dragging with it memories of old hospitals and old heartaches.  Nonetheless, we all agreed that this was the best thing to do for Jason in his struggling state.  

We put the tube in and a Dietician met with us to set Jason's intake levels.  As of the day this post was written the tube is still Jason's main source of nutrition.  He can eat for pleasure (as if there's really any other reason?  Just kidding) but his calories and nutrients come from the NJ tube.  After two more days in the hospital and a knock-down drag-out fight with our insurance we finally got to bring Jason home.

So... Now What?

Good question!  Since then Jason has put on about 8 pounds and is doing slightly better.  We've had to watch him for re-feeding syndrome (this is the same thing that happened to survivors of concentration camps in World War II: http://en.wikipedia.org/wiki/Refeeding_syndrome) but so far he's been ok.  His equipment has been another matter.  The first night his pump didn't charge right and died, and since then the actual tubing repeatedly kinks and bunches up in his stomach.  As any nurse will tell you, NG & NJ tubes will frequently clog, especially when you push meds.  But Jason isn't receiving any meds through his tube and we flush Jason's tube about every four hours.  After several more trips to the ER we learned that his tube was not clogging but kinking.  For some reason it just keeps bunching up in his stomach.  

"Some Angels chose fur instead of wings" Daisy with her boy

There are a multitude of reasons this could be happening. Really though we still have no definitive answers to Jason's condition.  It's like living the most frustrating season of House M.D. or Medical Mysteries of all time with no end in sight.  We have lists of questions that just seem to spawn more questions.  Jason has a severe muscular weakness on the left sight of his esophagus.  Couldn't this have carried down to the muscles in the rest of his digestive track?  What about his pancreas?  He has a form of fibrosis (pulmonary fibrosis), should he be on pancreatic enzymes?  Or shouldn't he?  Doctors have mentioned bacterial growths in his stomach, what about that?  And what on Earth will it take for someone to say, "hey, maybe 80 pounds is a little low, lets quite dorking around and do something?".  

For now at least, Jas is getting much needed nutrition through his feeding tube.  We still have no reasons or answers for why this is all happening but he's more chipper and we are on the road to hopefully solving a decades worth of health mysteries.  In the meantime we are grateful for all the support we have received.  Our family is very close-knit and independent.  We hate to ask for help or impose on anyone but the Lord does seem to have a way of helping us overcome our weaknesses and sending angels to help us do so.  

Jason's Journey

Thank You

We'll keep you posted on Jason's Journey; thank you for all of your love and support, prayers and meals, patience and empathy.  A wise author once wrote:

"I wish [it] had never come to me, I wish none of this had come to pass"

"So do all who live to see such times but that is not for them to decide.  All we have to decide is what to do with the time that's been given us." -Tolkien

Thank goodness for the blessing of agency, and for everyday we get to spend together.  Thank goodness for friends who lift us up when we truly wish we could change everything about our lives.  Thank goodness for the gospel of Jesus Christ and the unseen support running races around us.  Life is truly precious and no moment truly lived is ever wasted.  

With love,

LeAnne (on behalf of The Franke Family)