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!





Friday, October 29, 2010

Chemo: Round 16

Please keep your hands and feet inside the ride at all times!

 
 
 The CT Scan showed the candy in his pocket.

You'll have to click on this picture to see the full effect.  To the right of the capital building is LDS Hospital where 4 of my boys were born.  Occasionally we get a nice view from Jake's hospital room.  Last time, we had a nice view of the parking garage!  See the storm rolling in? I had to drive home in a huge snow storm!

Ever since Jake found out he had cancer he has been wearing two different shoes because one of the shoes rubbed on his toe wrong and gave him an infection.  He ended up having his toenail removed.  I finally asked him if he wanted a new pair of shoes (I thought he was making a fashion statement).  He said, "yes, that would help!"  Hmmmm, all this time I thought he liked wearing his shoes like this!
 

Here's Jake with some of his Conkerr Cancer pillow cases.  They let him pick some colorful pillow cases when he is admitted, to brighten up the drab white colors of the hospital.  The tubes connected to him (which are actually connected to line up by his heart) are where they give him saline to make sure he is hydrated enough so the chemo doesn't fry his insides (too much).  When he is hydrated enough, they push the chemo through this IV that goes directly into his arteries.  I hate to think what it is doing to his heart!


He often brings his own blanket from home.  I have to wash everything when I get it home because it is toxic from his sweat.  He is smiling...for me.  He gets hardly any sleep because he has to go to the bathroom every hour.  The best part of the hospital stay is coming home.

Besides losing his hair and his appetite, he is losing a lot of strength and feeling in his fingers and toes.  I have to open toothpaste and water bottles for him.  He is down to 125 lbs.  It's getting harder and harder to find a place to give him his shots.  I have to make him double up and pinch the skin together to fabricate fat.

Love you Jake!  Hang in there, bud!








Tuesday, October 26, 2010

Scan result

The scan was very good.  The lymph nodes are no longer swollen and his tumor has shrunk to about 1/2 the size it was.

Jake update 10/26/2010

Jake's hair is fuzzing in, but he says it still falls out easily.  I was very disappointed to hear this because I was hoping it was growing back for good!  I guess we can't hope for a good head of hair until April, when the chemo is over with!

We are here at PCMC getting a contrast scan done.  We find out the results around noon, then he gets admitted to the hospital for Chemo Week 16.  Hopefully all the drinking he has to do for the scan will help him be hydrated enough for his chemo.

It was nice to have a little break from the chemo for the past two weeks, but the trip to the ER didn't make it feel like a real break!  Maybe next time! :) 

Jake said he was done with cancer!  He is tired of treatments and of the pain and sickness that goes with it.  I could barely get him out of bed this morning to bring him into the hospital.  Nevertheless, he did get up and come, he is drinking the 3 cans of rootbeer in an hour so he can get his scan and he is trying to drink lots to be hydrated enough to get his chemo treatment. 

We come to the hospital and we see lots of little ones with cancer.  It's so sad!

Monday, October 18, 2010

Sunday, October 17, 2010

Next!

I checked on Jake on the way home and he was feeling ill.  I had John check to see if he had a fever and he did.  He was down in St. George visiting John and he forgot (so he says) to take his Neupogen shots with him.  His Uncle Scott is an OR nurse, but he was out of town (I'm sure he still doesn't know that Jake had to go the the ER).  Anyway, I called the on call doctor and they said to take him into the ER to get some antibiotics.  I'm so proud of Tyson (cousin) for having the smarts enough to call the bishop and have him give Jake a blessing before they took him in.  I was freaking out a little not being able to be there with Jake and make sure he was getting taken care of properly.  John did a good job, though.  They finally got checked out at 2 a.m.  Jake got home about 5:30, 6:00 p.m.

I got a call from an ER nurse requesting Jake to come back in and get admitted to the hospital.  The Hem/Onc consult doc wanted to give him some more antibiotics.  I politely told her "No Thanks!  We will follow up with our own docs here."  Jake wanted nothing to do with going back to the hospital!  Last time we had an ER visit, he was fine in the morning.  It didn't work out the same this time!  He still had a fever of 101.  No doctors I trust were available Saturday evening.  I knew I had to get some more antibiotics in him and some food.  With a little medical background, some research, common sense and a lot of faith, I found something that worked!  His fever was down this morning and completely gone by this afternoon!

I was pretty stressed and emotional all morning because the choir was meeting at my house and I wasn't sure if I would have to take Jake back to the ER this morning.  Wasn't sure if I could give my Primary lesson either.  It all worked out...somehow.  I was strengthened my some friends and the spirit at church.  I did get choked up, however, when they sang I'm Trying to Be Like Jesus in Primary because it now reminds me of John leaving home.  Jake gets another round of labs in the morning and if the counts are good, then we will stay the course.  If not, we will take a trip up to the clinic.

You know, I was so looking forward to a break from all this!  I guess it was silly of me to think, No chemo, no problems!  Sigh!
Next!

Friday, October 15, 2010

ER Round 2

Jake went down to St. George to see his brother this weekend.  He got sick, but was just going to go to bed.  I told John to check his temp.  Another trip to the ER!  I hate not being there and making sure the doctors are doing the right thing! :(

Sunday, October 10, 2010

Chemo: Round 13

Well, we are figuring out what normal is.  This was another overnight stay at PCMC.  We are back to 3 chemo drugs, one at a time, of course.  I used to think that they mixed the drugs before they gave them to him, but one they push with a needle and the other two drip through the IV.  What takes the most time is getting him hydrated enough to put the chemo in  his veins.  He never gets any sleep there because they pump him so full of saline he spends all night peeing.  They did, however, get a new Wii system that had lots of games on it.  The fourth floor was full, so they made him go down on the third floor.  I didn't like it as much.

My brother, Sam took me to lunch to the Lion House.  I had never been there before!  It was delicious!  Thanks Sam!  We always have nice visits...a little brother/sister bonding time!

Dave came up after work and hung out with Jake until after his chemo was done, after 10 pm.  I drove back up Wednesday morning and checked him out and took him home to sleep for a couple days.

The great news is we get a little break from cancer therapy for 2 1/2 more weeks!  He has a chance to heal until the 26th of October.  They will then do some new scans and tests and compare them to the tests he had done before the chemo and radiation.  Then he will have another overnight chemo stay and start another 15 week course of chemo therapy.  His counts were down on Thursday, so we had to start the Neupogen shots up again.

We are going to try and fatten him up a little and let him heal!  Bring on the Halloween Candy!

Sunday, October 3, 2010

Chemo Jake

This is chemo Jake.  He is like this for about 2 days after chemo.  My friend, Sylvia, made this blanket for him because he spends the hot summer days wrapped up in quilts and blankets.  It's about 75 degrees in the house.