This is Jake's Story...

Jake is a 20-year-old twin who has been diagnosed with stage 4 Rhabdomyosarcoma, a very rare form of cancer. Going through a vigorous daily radiation treatment and weekly Chemo treatments make him extremely tired, weak and sometimes nauseous.

Jake is otherwise a normal teenage kid. He likes playing computer games, paintball, swimming and golfing. He loves hanging out with his four brothers, 4 wheeling, camping, and ruining his mom's laundry baskets while making home videos. He hopes to someday become a computer programmer.

This blog was started to keep his family and friends updated on his status.

Addendum: Jake became cured of cancer, free of pain and everything this world brings on September 29, 2010. He continues his journey in Heaven. He is doing awesome! Hope you're doing the same!

His family thanks you for your generosity in donations, love and service. God has shown us many tender mercies!
Thanks for being one of them!

Sunday, August 29, 2010

Life's Little Lessons

First of all, Jake is doing well.  He was a bit ornery this last inpatient chemo, but let's face it, having cancer is no picnic!  So he's entitled to bad days on occasion.  Jake has kept a pretty good attitude thus far.  We are looking forward to round 8 of chemo this week and continuing with two more weeks of radiation therapy, M-F.  I asked the Oncologist if they checked the progress and he was doing well, if they would quit the chemo and call it good.  She said that it only takes one single cancer cell to have the cancer come back, so it's a full 40 weeks of chemo.  April 12th is the target last day of chemo!  So far his counts have been good enough to have chemo on the scheduled days, so that's good.

My good friend Jenene was asking me about how things were going.  I made the mistake of taking inventory of all that is on my plate at this time.  Suddenly I found myself headed for the Pity Party Boat.  It's pretty over whelming when I sit and think about everything I have to manage in my life and all of those souls who depend on me to help them with theirs. (Deep breath)  I can no longer comprehend all that I have to do...but I have to just take it one day at a time and try to fit all the important stuff in.  The thought crossed my mind that maybe I should take a break from teaching Primary, but then the question came... can you afford to lose the blessings that come from that.  Later, as I was sitting in church, singing hymns, the thought came...the words to the song is:  Count Your Many Blessings...not Count your many challenges!

One of my many blessings is that God puts people in my life so I don't have to don't have to carry my part of my load by myself!  Just enough to often remind me that God is aware of my life and my hurts, worries and challenges and He is never too busy or too consumed by other things to be there for me.  As amazing as that sounds and incomprehensible to know that He does that for all of His children who will let Him, it is a great comfort and strength to me to be able to depend on that.  I can't begin to list all the lessons He continues to teach and remind me of.  I am amazed at the lessons He teaches me through all of my daily life moments, through a song, a BYU talk I happen to catch a couple minutes of or a book or article that I glance at.  Sometimes it just the act of sharing my testimony or personal experience with someone that testifies of His love for me.  It's like I'm on an accelerated learning course and if I duck my head into the self pity bag, I miss all the lessons that He has to teach me.  Sometimes, I'll be listening to an old talk and He pricks my heart with a few key words (like:  Hey, I want you to listen to this!) then He opens up my level of understanding just a bit more than I had before.  Then He waits to see what I will do with that new level of understanding.

So much to little time!

Tuesday, August 17, 2010

Happy Dance

Chemo #6:  Last week his ANC (ability to fight infection) went down to 0.  This is not good.  This means we have to give him a shot in the stomach every night...which he hates!  It burns when it goes in and for a time afterwards.  However, the shots (and prayers) helped because his counts were fabulous today 9.9!  He also gained a pound!  Who would have thought that gaining weight would be a GOOD thing!  Too bad you can't do that by proxy!  I would have had him covered for sure! ;)

Next week is another overnight stay.  They have Xbox 360's in the rooms, but only one game that's not for little kids (Need for Speed Proshift).  If anyone has any games he can borrow for the night, let us know!

It's only August and we already used up all of our Flex spending.  Well, we'll just keep paying our tithing and wait for the next miracle to show up!

On a lighter note, Zack and the boys got a short-term job to earn a little money for school and their own bills.  Zack is trying to get school registration figured out at UVU.

Mike and Spencer are trying to wrap their minds around the fact that school will start for them next week!  Come to think of it, so am I!  New Schedule!

Dave is still doing his same old thing.  I still try to play racquetball when I can.  I'm daring to get back on an exercise program with my niece, Jessica.

Thanks for your continued prayers and thoughtfulness!

Today is a good day!  Let's celebrate! 

Monday, August 16, 2010

Roller Coaster!

Life with cancer has really been a roller coaster ride!  I had lunch with my brother Sam and we were talking about how he had life so good with a super wife/best friend and 3 awesome boys, fantastic in-laws and lots of close family support.  Everyone is relatively healthy, good job, nice ward, nice neighbors.  My life was like that not long ago.  It made us both grateful for the goodness we have in our lives.  He has a neighbor who is having a hard time dealing with the news of his cancer.  Even though it is treatable, he has already fallen into hopelessness, which is a very sad state to be in, no matter what your situation is.

You know, my worst day wasn't when the first doctor told me that Jake had cancer, it was when the last doctor told me that there was no hope that he didn't have cancer!  Then came the grief and shock and sadness and wondering how this happened to Jake!  But then, came the hope again.  Hope that the doctors could treat this illness, hope that Jake would be able to withstand the side effects of the treatments and keep a good attitude, hope that I could deal with this without having too many break downs, hope that we could afford the financial strain that comes with treatment, hope that I could manage my life in a way that every good/important thing could stay on my plate and that somehow I could be super woman and handle it all!

Every child dreams of what their life will be like and hardly anyone's lives live up to those dreams.  Sometimes they are more fantastic than we could have imagined.  Many times there is much more tragedy than we expected and we ask God, "Really!   Is this what I signed up for?!"  and He'll say, "Yes!  Isn't it fabulous how much you've grown already!  Don't walk away from the blessings!"

Here is the chemo song I wrote for Emily.  Who knew I would sing it for my own child!

Chemo makes me sick!
I don't like it a bit!
I lost my hair!
But I don't care, cause...
I am a child of God
and He has sent me here
has given me an earthly home
with family kind and dear.
Lead me guide me walk beside me
help me find the way.
Teach me all that I should do
to live with Him some day!
(I Am a Child of God words by Naomi Ward Randall)

p.s.  Roller Coasters are very exciting to ride!!!  Some parts fun, some parts not-so-much!  Never a dull moment! :)
Life is good!

Tuesday, August 10, 2010

Chemo: Round 5

Jake goes Hawaiian!
Well, last chemo treatment wasn't so bad.  Nothing real bad happened afterwords, so we are counting our blessings for that.  Radiation started on Monday at the Huntsman Center.  So far, no really bad nausea, just a little around 8:00 p.m.  

Today, radiation and chemo...can you say "Wipe Out!"  I still have to give him shots at night (which he hates) and he has lost 10 lbs, so its hard to find some fat on him to put it in.

Good News:  He is responding well to the chemo and radiation.  The radiation is low dose and the swelling in his leg has gone down nearly completely.
Bad News:  Swelling in other places hasn't gone down at all.

Good News:  Side effects of the radiation and chemo are minimal.
Bad News:  He has to have a blood transfusion tomorrow, but that's normal.
Good News:  I'm thrilled he hasn't had to have any transfusion until now!

Couldn't get through the morning without tears.  Trying to be tough as Jake, but some days...
Jake is my hero!  He is one tough nut, with emphasis on Nut!  He doesn't complain, except when I give him the shots, but not very often.  He is very sweet because I know he is concerned about me.  I always catch him looking to see if there are tears in my eyes.

A huge thanks to those who brought dinner in for my family last Tuesday! Also to those who do the little reminders to us that they are thinking and praying for us.  We so appreciate all the thoughtful gestures, big and small.  I've been surprised at how much strength I personally draw from those that love and support us.  I realize that it's not like having a don't just express your well wishes once and then she recovers and gets on with living life; it's a longer drawn out process, and getting on with living life like we used to will be much further away than a week or two...if ever.  Thank you for showing me that compassion is appreciated for the long run.  

Thursday, August 5, 2010

Chemo: Round 4

Well, now we know what normal is like.  We haven't gotten the bill yet, but the first hospital bill was enough to make me gasp!  This was the first time that Jake has felt nauseous.  I was feeling pretty nauseous myself this morning.  He has some new pain in his neck, but he says the pain medication is taking care of that.  He was suppose to start his radiation therapy this afternoon, but we rescheduled it until Monday (no need to kick a guy while he's down!).  Then it goes for 28 days.  You always want them to pull through with flying colors, but that doesn't always happen.  His labs weren't too bad, but his ANC was down to .06, which means his ability to fight infection is down.  He is losing his sense of taste.  His cereal did not taste good to him this morning.  I did get him to eat 1/4 of a chicken burrito and a doughnut.  His weight is down a bit. 

How are we feeling?  Jake is tired.  I'm emotional.  I'm near tears if I have to say Jake is not feeling so well out loud.

My heart is breaking for my friend Iva, who just had a stroke, and her daughter, Janine, who is taking over the care for her and her father, and her son is leaving on a mission soon.  Come to think of it, we had some drama just before Zack left on his mission too.  Sometimes it's almost unbearable when you need to be stretched during the challenging times.  It's those times when we go to our peaceful place and let the Lord blow all the challenges off our plate, at least for a little bit and we feel His arms wrapped around us as He brushes the tears away and gives us feelings of encouragement, love and understanding.  Most of all, He gives us peace and the courage to take another breath, open the next door, take the next step, climb the next mountain, always whispering that you're not alone and you can do this.  Then, if you look up instead of down, you see all the tender mercies He has given you and it gives you strength to keep going.

Monday, August 2, 2010

Good one Sylvia!

We had Jake's hair made into dreadlocks! haha  My friend Sylvia brought this hat over to Jake along with a bunch of scarves for different occasions!  Fabulous!  What a great idea!  Thanks Sylvia!