More than just a Cancer Survivor

Hi,

This post is about Jason.  Not about his illness, doctor's visits, or anything else cancer related.  Just Jason.  It's easy for the illness to take over, to become all that's discussed and the center of worries.  But there's a person behind that.  And he's pretty awesome.  JJs illness is a part of his life, there is so much more to him than that.  This post really only scratches the surface but it seemed important that you know the boy behind everything.

Jason is twenty years old and was born on July 29, 1993.  He is the second oldest in a family of five, and the oldest boy:

The Peeps

Jason also loves animals; they've been a part of his life for a long time:

Then....

Now

His favorite animals are birds, especially cockatiels like his bird Piper:

such a pretty bird

Jason works at the Megaplex movie theater at Thanksgiving Point in Lehi, UT.  He cooks and sells delicious movie theater goodness and helps take tickets.  The Franke siblings frequent the movie theater.  Jason's top five movies are:

• Frozen
• Knight and Day
• The Avengers
• The Lone Ranger
• Finding Nemo

Jason's house of choice at Hogwarts

Jason also basically rocks at video games; right now he and his brothers are working on conquering the new "Disney Infinity" game.  He also really loves "DC Universe" and "Super Smash Bros".

Jason is a voracious and ridiculously fast reader.  He can get through a large book like Harry Potter and the Order of the Phoenix (which he's read multiple times) in about a day.  His favorite book series are Harry Potter, Heros of Olympus, Percy Jackson and lots of other books too!

Jason is an eagle scout.  His project was to make blankets for kids at Primary Children's Hospital (a place he knows too well).  He's also been attending Utah Valley University.  Jason has been working on his general education classes and also taking a few classes in drafting, architecture and engineering.  He loves working with the AutoCad software program and loves to design and build things.  

And for reals, Jason really does like to eat!  Some of his favorite foods are pepperoni pizza, cheeseburgers, chocolate milkshakes, pretzel bites (from the pretzel maker in the mall, it's his favorite store there ;)), cheese (cheddar), cookies (especially sugar cookies!).

Jason says that if he could go anywhere in the world, it would be Greece.  He loves Greek mythology and just thinks it would be really cool to go there!

This is just a little bit about Jason; this blog talks a lot about what's going on with Jason's trials and sickness.  But it seemed like it was time for a post just about Jason.  Jason has never let his cancer define him.  He's so much more than a brain tumor survivor.  It's easy for a cancer survivor to get lost in that label, but Jason hasn't!  He's so much more and so so loved!  Thank you for keeping him in your prayers, and supporting him it really does mean the world to all of us at the Franke house.

Top of the Muffin to yah,

LeAnne :)

The Eye of the beholder....

Hi everyone! So I thought I'd give LeAnne a bit of a break because she has been so busy and I'd try to update the blog. Yikes, this might be a little scary so hang in there. LeAnne is a wonderful writer and I love her posts. I've been so proud of her and how positive she has made each entry. It's almost like I'm reading about someone else and I think to my self, "wow! what an amazing family, and amazing young man!" I realize that it's my life and my children and then I feel very humbled at what wonderful young people I have living with me. In spite of living with me and their Dad all these years, they are turning out OK!;) As LeAnne mentioned, last week we, well mostly Jason, dealt with a horrible test that eliminated another part of Jason's digestive system, but the after effects of that test were the worst! I'm so glad that it is over, and if I never have to watch and experience what I went through that day with my son ever again, I'll be very grateful. We had another appointment this Monday for another test, this time the doctors were looking at Jason's small bowel. Not as bad as I was prepared for, so I'm so glad! Jason is such a trooper. He always has been. Even when he was ten and fighting cancer. He has such a strong desire to be healthy that he goes through what I feel are horrible things just to have the test results come back empty or within the 'normal' range and then in his Jason way, he'll say "OK, what's next?" My good friend is keeping pictures updated on Jason's Journey facebook page, and it's so typical of Jason that no matter how bad the nausea, or the stomach pains, he is always smiling, always trying to make it a good day. I love that about him. Today I'll be taking him in to see his GI doctor and we will be talking about what is next. These appointments always make me nervous and anxious because I never know what's going to happen, and after we talk, I always feel like I go home and come up with a hundred questions I wish I'd asked. It's so hard when this has been something that in a lot of ways he's been dealing with for so long. I feel like the doctors at times because I'm scratching my head most appointments thinking, "OK, so what do I do next? You'll give me these things to go home and do and then I'll end up with another problem to deal with." For instance, now Jason is dealing with horrible/severe constipation. He's so backed up that the doctor thinks that's what is making his nausea soo unbearable. But Jason will do like I ask him after we talk to the nurses about what he needs to take and drink. But it's hard to watch him gag and struggle to get things down. I know any parent out there reading this is with me when I say, as a parent if you could step in and take away something that you know is a horrible thing from your children you would without hesitation. Jason is still sleeping on a roll away bed up in mine and Aaron's room so that I can get up at 3AM and flush his feeding tube. I guess I'm a bit of a light sleeper, or maybe it's because I know my son is close by. But some nights I listen to him moan and groan from pain or discomfort and it still breaks my heart. I wish I could do more to help him. So today I made me a list of possible questions that I might have. A good suggestion from a good friend. :) We will let you know more as we find out things. You may wonder why I titled this post the way I did. I did have a good reason. I was thinking a lot about things, how crazy life has become, and as a mom and wife how my role in all of this has changed. I thought of that saying "Beauty is in the eye of the beholder". I guess it's because Jason has had playing in the morning music from 'Frozen' to 'Tangled' and even though he's a little off key, I love to hear him belt out those songs. One song in particular got me thinking about that saying. It's from 'Tangled' and it's the one called "I see the Light". I'd post a link for it, but I don't know how. But for any of you who have seen 'Tangled' it's the song that Rapunzel and Flynn sing to one another in the boat when they go to see the lights on her birthday. The words are beautiful and I know are used as a love song between these two characters. But I have found myself thinking about it in my own life. With verses like "All that time, never even knowing just how blind I've been. Standing here, it's oh so clear I'm where I'm meant to be..." You see since Jason got sick all those years ago, I have been fighting the life I have and been trying to make it "Normal". After Jason's surgery to remove the tumor and we were so grateful that it went better than they had prepared us for, one of the Oncology doctors pulled me aside and told me that no matter what happened I needed to keep things 'normal' for Jason and our family because if not it would never get back to that after this was all over. I tried and those that know me know how hard I tried to act and do things as if everything was normal. This is what everyone does right? We all have children go through near death experiences right? 11 year olds that have to re-learn walking, talking, caring for themselves, writing, speaking clearly etc. I know there were many mistakes I made through this time in our family's journey, and I know I'm starting to come to terms better with seeing what I need to do. As hard as it is, I see where I'm needed and it's not 'normal' right now, but I will do my best to help my children and husband so that it's our normal. This is the life Aaron and I always wanted. A home, and children, the good and the bad. But even when times are bad, we still seem to make the kids smile, or laugh, take for instance this past Sunday while I was helping Jason get ready for Church. I am no good at shaving a mans face, or helping with a tie. Not a skill I have. However in my way I helped Jason laugh because I don't know how to do those things. He sees in me just like I do in him someone that is trying to make the best out of a hard situation. Someone that is taking one day at a time and finding the beauty that is out there, even if it's not 'normal'. Maybe one day it will be but then again, this might just be our 'normal'. So it's taken me some time to see the beauty that is in this, and that's OK, at least I'm finally seeing it. It helps that I have great examples all around me. My Ward for instance and neighborhood, I'm surrounded by people that do hard things and keep smiling. I have friends that work full time and take care of their kids full time while husbands and Dads work full time too. These are hard things, and even on their bad days they keep smiling. There are at least 4 different families in my neighborhood that I can think of that have dealt with surgeries and illnesses and long term conditions and even death and they just keep plugging along. They are powerful examples to me and help me to keep looking at my day and to keep looking to Jason and his strength and to keep smiling. Last Christmas I got to see my cousin Jeff which for me would be the last time before he passed away from his battle with cancer. One thing he said to me when we were talking about Jason was, 'It doesn't matter what the journey holds, it only matters who Jason has with him'. It's true. It's not the journey, but the people and in my case, I'm so grateful to be surrounded by family and friends that love us and help us. I'm grateful they are patient with me and my struggles, but most of all I'm grateful for Jason, and my children who teach me to keep smiling, and to keep pushing through. At last I see the light. Thanks again everyone for your continued prayers and support. We love you! Jenn

Process of Elimination

Hi everyone!

Sorry for the lack of updates recently.  It's been a crazy week!

Jason had scopes and tests this week.  From what we can tell, the doctors are working their way down his digestive track eliminating suspects in the search for what's causing all his health problems.  His scope came back negative for anything at all, his stomach looks perfectly normal.  We did a small bowel follow through Monday morning (this a test where you drink a barium solution and then have a scan done and the barium shows up and shows any abnormalities).  At first glance it looks ok, but we are waiting to hear the final ok in a couple of days.

The day of the scope was pretty traumatic.  The doctors wanted to try to put in a larger NJ tube for Jason so it would hopefully not clog and kink so much.  Shortly after they put it in however Jason's body (small intestine and stomach specifically) freaked out and he basically threw the tube back up.  His Mom, Jenn, says it definitely makes the list of most traumatic days ever.  So they took that tube out and put the smaller one back in and we are carrying on like we did before.

The next step is a colonoscopy.  But Jason needs to gain a little more weight before he is healthy enough for that procedure.  In the meantime, he continues to slowly but surely gain weight as we try to determine why his body seems to be rejecting food and solids.

The tests were long, but we partied hard this weekend.

We are blessed to be a part of the Manila YSA ward here in Cedar Hills.  This Friday a huge group from the ward came to Jason's home and played video games, sang songs, and enjoyed delicious heavenly treats with him.  Jason hasn't been this happy in a long time:

**having technical difficulties with my phone, will post pictures as soon as we have them!

Jason absolutely loves the movie Frozen, as well as the music that goes with it.  We finished the night with a rousing chorus of "Let it Go".  It was kind of symbolic in a way.  Afterwards Jason commented how loved he felt, and how lucky we are to have so many wonderful friends who would spend their Friday night with us.  Thank you so much to everyone who came; you have no idea what a wonderful night that was.

Jason loves music, so does his buddy Piper

We've had to push back Jason's riding lessons by a couple of weeks, Sam the horse has an infection in one of his feet and can't be ridden for a little bit.  We are also keeping a close eye on Darwin the beagle, he hasn't been doing well this week but he has some new medications and we are hoping for the best.




I like ending with an uplifting thought:

"A story is told that during the bombing of a city in World War II, a large statue of Jesus Christ was severely damaged. When the townspeople found the statue among the rubble, they mourned because it had been a beloved symbol of their faith and of God’s presence in their lives.
Experts were able to repair most of the statue, but its hands had been damaged so severely that they could not be restored. Some suggested that they hire a sculptor to make new hands, but others wanted to leave it as it was—a permanent reminder of the tragedy of war. Ultimately, the statue remained without hands. However, the people of the city added on the base of the statue of Jesus Christ a sign with these words: “You are my hands.”

Source: You Are My Hands

I was thinking how beautiful hands are the other day. Sometimes in our world we judge each other so critically on things that don't truly matter. Height, weight, physical appearance. But one thing we all have in common is a set of hands, or rather, the power to choose to uplift each other and create beauty and healing in this world, or the power to destroy and tear down things around us. How beautiful a world would it be if we all recognized the power each of us has to change someone else's life? I work in the medical field and get to see people literally using their hands to bless someone else's life. Whether it's something literal, like a medication administration, a surgery, or helping with a meal, to something less concrete, like comforting a mourning family member, I get to see these miracles everyday.




We all have this ability though. We all can be the Savior's hands. My family and I have been the recipients of those acting in place of the Savior, those who have been His hands. It makes all the difference in the world.

The talk above also shares this story:

"One woman who had been through years of trial and sorrow said through her tears, “I have come to realize that I am like an old 20-dollar bill—crumpled, torn, dirty, abused, and scarred. But I am still a 20-dollar bill. I am worth something. Even though I may not look like much and even though I have been battered and used, I am still worth the full 20 dollars.”

All of us has an infinite worth, just like that 20 dollar bill that can never be devalued, or decreased. This is a beautiful truth. And we discover this value losing ourselves in the service of others.

No act of kindness is so small that it goes unnoticed. What can your hands do to bless someone's life?


Top of the Muffin to you all, have a good week!

-LeAnne

Trotting in place

Hi all!

First, we want to say thank you SO MUCH to everyone who helped organize and who came to the taco night on Monday.  It meant so much to us, more than we can ever say!  My mom shared this but in case you didn't already see it:

I read your email this afternoon Megan, and wanted you to know that at 3am while I was up unclogging Jason's feeding tube, I was overcome by the emotions that I felt for you and our ward family. I am truly blessed to be surrounded by all of you and honestly don't know how I'd still be standing without all of you. Thank you so much for doing this for my family, it brought much needed peace to my heart and soul and helped me to again be humbled by the love that our Savior and Heavenly Father have for each and every one of us. We are not alone. I love you guys, all of you and will never be able to adequately express how much this meant to me personally to see such an out pouring of support for Jason. --much love and appreciation Jenn Franke

One of our favorite pictures is this one:

This picture hangs in our kitchen, and has been hanging there since around the time Jason was first diagnosed with cancer.  We all have heavy handcarts to pull in this life but we are all also surrounded by angels, both seen and unseen, to help lighten our loads.  We witnessed that this week when we watched our friends and neighbors gather together to serve tacos, desserts, and service.  You are the angels in this picture, helping us trudge uphill through the snow.  We can't thank you enough <3

How's Jas?

Since Jason has had his feeding tube he has gained 13 pounds and actually grown half an inch!  But he still has a long road ahead of him and you could write a book on everything we don't know.  I can't decide if that book would be a long book full of questions or a short book because we don't have answers but whatever.  Jason had appointments with an endocrinologist and a gastro doctor this week.  The endocrinologist ran some blood tests on his pituitary gland that we found out should have been run before he started receiving nutrition.  Now that he is getting the nutrition that he needs it skewed the test and so everything came back (wait for it) pretty normal.  The doctors were sort of expecting that though.

On the gastro side of things however we are slowly making progress.  The doctors have finally agreed to scope JJ (an endoscopy and a colonoscopy) but they are unsure how to proceed.  He is still severely underweight and the anesthesiologist is concerned that the procedure just isn't safe for him.  They feel he may need to be admitted to a hospital, or that the procedure should at least be done in one instead of an outpatient clinic.  We aren't looking forward to more time in the hospital but it's not like he's been in the hospital latel-oh wait.... ;)

So basically, after another weeks worth of doctors appointments we are stuck waiting again.  

In other news, we are trying to help JJ get back on his feet a little bit.  We don't want him to over-do it but we do want JJ to keep doing things he enjoys and getting out while still recuperating and regaining his strength.  We are pretty excited about how he'll be doing this.

Meet Sam:

Sam (or Sammy) is an approximately 14 year old American Quarter Horse/Arabian mix.  Sam is also a very special horse.  He is a therapy horse and gives lessons to kids and adults of all ages.  Jason and Sam were riding for about an hour once a week before he was admitted to the hospital.  Check it out:

Jason is riding in an English saddle here.  He learned to direct rein and was learning basic dressage patterns at a walk and learning to sit a trot.  Here are some of the differences between western and english riding:  

http://www.equisearch.com/horses_riding_training/training/beginning_rider/english_western102200a/

An english saddle is a little more challenging to ride in than a western saddle, but Jas was picking it up like a pro!  Now we are moving him towards getting back in the saddle (literally!).  It's good to see old friends:

It's pretty safe to say that some angels chose fur instead of wings :)

Jason will hopefully start riding again in the next couple of weeks.  In the mean time, thank you for your continued prayers and support, we couldn't do it without you!

Top of the muffin to yah!

-LeAnne

Update on Jason and Musings from the Top of the Muffin (just read it)

Hi everybody,

Just wanted to update you all on Jason.  This week we had several more appointments with doctors.  We got a second opinion from another gastroenterologist but it sounded vaguely like every other doctor's visit we've been to for the last ten years.  The doctor ordered some familiar sounding blood tests and set up a follow-up appointment for two weeks from now.  This visit we did a CBC & CMP (complete blood count and complete metabolic panel, not exactly diagnostic wonders fyi) and we re-tested JJs thyroid.  We've done all of this before and after this visit we had a distinct "Groundhog Day"feeling on the trip home.  But we are still hopeful that we will find something and get to the bottom of all of Jason's health problems.

This week we have more appointments.  The first is with an endocrinologist (doctors of hormones, and one of the more perplexing specialties of medicine) to investigate Jason't pituitary gland.  This little gland is vital to your body's hormone production and there is concern that the damage done to it during Jason's treatments are part of why he's having so many problems.  We are also going to see our original gastro doctor.  We are pushing the GI for scopes (colonoscopy and an endoscopy) to actually physically look down JJs digestive track and see what's going on.  We've taken lots of shots in the dark (eating strategies, hormones, medications, etc) but ironically Jason has never been physically scoped to see if there is something mechanically wrong with his stomach.   Hopefully that will be fixed this week.

Jason's NJ tube continues to clog but we've become a lot more skilled in the unclogging department.  LeAnne also printed a chart to help track how often it's being flushed and how often it clogs:

charting like a boss

We are also once again charting his fluid and food intake & output (calories, etc.) and anything else we can think of.  Good times.

On a related side note, we are also pushing meds with our beagle Darwin.  Most of you probably know our sweet boy; a week ago he was diagnosed with a tumor in his nose that is probably bone cancer.  They can't treat it like they do in humans; we are just giving him steroids and some other medications.  We are very sad but he is still very healthy right now and we are just enjoying every minute we have with him:

A boy and his dog

Our final bad news minute is this: Mom (Mrs. Franke) is no longer employed at Cedar Ridge Elementary school.  Through a series of really unfortunate events she was told it would be best if she stepped down so someone else who could "come more consistently" could take her place.  She is so sad because as most of you know she loves the kids she works with and being at Cedar Ridge.  She wants them to know that she would have stayed if she could and she hates that she never got the chance to come back and say goodbye.  She also knows she needs to be with Jason so it's really kind of a bittersweet catch-22.

Mom made this collage

Thankfully the month of February (a really unlucky month historically for the Franke family) is behind us.  I (LeAnne) write a lot and I was looking at my writing journal and wanted to post something I wrote about.  If you'll indulge me, here goes:

I am a huge Seinfeld fan.  I've watched a lot lately to help me relax (I firmly believe laughter and a sense of humor can get you through anything!).  One of my favorite episodes is The Muffin Tops.  In this episode, Elaine (my favorite character)'s old boss notices that she only eats the tops of muffins and decides to open up a muffin shop based on this idea.  They meet up again later and he tells her that his shop is failing but can't figure out why.  It turns out that he was trying to cook only the muffin tops and they were turning out horrible.  As Elaine points out, to get a truly delicious muffin top you have to cook the WHOLE muffin then pop off the top and toss the stump.  From this point on their shop is successful (until they can't figure out what do with all the stumps).

I think that life is like a muffin.  You can't have the tops without the stumps (the name of my journal is a play on this).  In life I think that you have to hold on to the muffin tops and toss the stumps.  This is rarely easy, and sometimes it seems like life throws you more stumps than you can handle.  This month has been like that for us.  But in the end that just makes the muffin tops that much sweeter.  Anyway, this analogy has made me chuckle and helped me remember to see the positive.

Thank you all again for all the support being sent our way.  An AWESOME family in our ward is hosting this fundraiser for Jason tomorrow (Monday) night:

We are overwhelmed (in a good way) by the sheer amount of kindness and service so many wonderful friends have given us.  Thank you thank you.

We will keep you posted on Jason's progress this week.  Top of the muffin to you all!

-LeAnne




PS: Need a laugh?  Muffin tops: