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!

Tuesday, July 27, 2010

First trip to the ER

Things were going ok until I was rubbing his bald head after he came up from a nap and it felt very hot!  I checked my "cancer book" to see what temperature I was suppose to call at and he was over that.  The doc told me to take him to the ER.  I gave him his antibiotics he was scheduled to have and took him in (after he threw up his dinner on the floor)....that reminds me, he probably doesn't have the antibiotics in his system now!  All they did for him at the ER was to give him an IV course of antibiotics and some Tylenol and Motrin.  His temp is still high, so I have to call the clinic in the a.m.  I was trying not to, but I lost it at the check in place (crying not yelling).  Scary stuff!

Saturday, July 24, 2010

The lost hair...

Hair, but falling out by the hands full.

The end result!
I told Jake it was ok to get 4 tattoos today!  These are the marks they put on him so they can position him exactly the same every time he gets radiation therapy (John said they were his permanent dot-to-dot.). 

Jake's counts were still good today, so he still doesn't have to have his shots.  We started out at the Huntsman Cancer Center and they took a CT scan of Jake's middle.  Next Wednesday they will do a "dry run" of the radiation therapy, then it actually starts Thursday, Monday through Friday for about 28 days (5 1/2 weeks).  We should be done with radiation around 9/13.

Chemo went well today.  Just a little tired...a lot tired.  They warned us that the radiation would make him even more tired.  I know it made me tired!  (weird side note:  I have been getting sympathy symptoms for Jake.  After his chemo I started feeling a little nauseous on the way home).  

Next week we should go in mid-morning and check into the hospital for the next chemo treatment.  He stays overnight and should be released around 10:30 a.m., then we go up to Huntsman to get the test run of radiation.  They said that the radiation definitely makes him nauseous so we are really looking forward to that!

Tuesday, July 20, 2010

Chemo: Round 2

Well that was very encouraging!  The doc was very happy about how much the swelling had gone down in Jake's leg already.  I was able to get more questions answered and we were done within 1/2 hour!  Jake found a shoe that he could fit on his foot (though he doesn't wear the matching shoe on the other foot).  They're both black, so I guess that's close enough (No, he didn't learn how to dress from me...well, he did, but he didn't listen too good! lol).  I told the doc that the chemo turned his hair black (and his brother's, and his friend's).  She said that was the first time she saw that side effect.  Next chemo-next Tuesday.  I think we will be doing the radiation planning that day also.

Round 4 of chemo (Aug. 3) is the one that is going to make me nervous.  Second overnight stay.  Probably a higher dose of chemo.  Radiation starting. far so good!

Addendum:  Blood counts waaaay down, so this isn't so good. :(

Saturday, July 17, 2010

How's it going so far?

Well, it's a little better now.  Jake, John and Austin decided to dye their hair black.  Not so bad for Jake because his hair will be falling out soon, but it's a decision that John will have to live with for a while longer. 

Jake totally lost his appetite until Friday.  He had one small bowl of cereal, each day, Tuesday through Thursday (I've got to get me some of that!).  Friday, his appetite started to come back.  Giving the shots is getting a bit easier, but still stings going in.  He has been taking the wrong antibiotic since he's been home...hope that doesn't mess things up.  So far, no fever, no nausea (which I'm grateful for cause those pills are $10 a piece!).  I had him measure his leg swelling this morning and it was down!  Yay!! 

Joyce let us use her cabin this weekend so we took a little vacation from the drama (tried anyway).  I learned something though, when you try to do something you love while amidst a crisis, it sucks all the joy out of the experience.  There were beautiful flowers and I love how the air smells with the weeds and flowers and trees.  The breeze on my face would keep the bugs away and the shade of the trees would keep it nice and cool.  There were beautiful vistas to see and the sweet companionship of my family.  Yet always there was that torturous reminder of worry...does he have enough sun screen on?  Are the bugs biting him yet?  Is he going to get scratched, then infected?  Did he take his pill this morning?  Was it the right one?  Is he drinking and eating enough?  Is he nauseous yet?  Is it clean enough?  Is the food fresh enough?  Is there anyone sick around him?  Does he have a fever?  Is the swelling going down yet?  Are we there yet?

I look forward to the day when the worst thing I have to worry about are my hot flashes! (sigh!)  K.  Done venting.  We are dealing and coping and we appreciate all of your prayers and love and support. 

Wednesday, July 14, 2010

Test Result

Since Jake's chemo treatment, his immune system is going to be way low.  We are asking that if anyone has a cold or any sickness that has germs, to please not come to our home until you are fully recovered.  If Jake gets sick from your germs and doesn't have an immune system to fight the infection, he could die from it.  Also, we need everyone to remove their shoes and use hand sanitizer when they enter the home.  We can't have anyone over that has been exposed to chicken pox. 

Jake should be feeling a lot better by Sunday.  He was pretty wiped out today and slept a lot.  His appetite is way down (and mine is way up!)  The bone marrow test came out clean!  Extremely happy about that!  Dr. Wright doesn't think the last test will show any cancer in it, but that should be done by Friday.

Had a little melt down tonight when I saw all the medical supplies the Home Health Care brought by (and a small heart attack when I saw the bill!) and I couldn't figure out which syringe to use for Jake's shot because none of them looked like the ones we practiced with in the hospital.  I don't know how you did it, Jill!  The nurse didn't show up until almost 10:00 pm because she misunderstood that she was suppose to come today.  It turns out that they didn't send the right syringes and she had to use a spare she had in her car. (Deep breath!)  I gave Jake his first shot in the tummy!  He was so brave!  This was a shot to help keep his white blood cell count up.  If his cell counts are too low they will have to do a transfusion before he can get his next round of chemo (scheduled for every Tuesday).

Tomorrow we go to Radiology to find out how his Radiation therapy is going to work out.  (big SCREAM!)  INFORMATION OVERLOAD!!!  (K, that felt better)

Good night!  I'm going to my happy place now :)!

Monday, July 12, 2010

Jake Update 7/12

Jake is out of surgery and just had a bowl of Fruit Loops.  We are waiting for the chemo team to come and tell us what our life is going to be like for the next year.

Addendum:  If they don't find any cancer in the bone marrow, the regimen will be an overnight stay every 3rd week.  The other weeks it will only take about an hour and he can come home.  This will be for the first 13 weeks, then they will reevaluate to see if the lymph nodes are shrinking or not.  The second 15 weeks will have the same overnight stays, but he will get to skip a couple weeks and not have to come up to PCMC at all.  Then reevaluation, then another 15 week course. 

The radiation therapy will start on week 4.  Most likely he will have to drive up every day for treatment every day, Monday through Friday.  We will find out more about this on Thursday.

They take really good care of Jake here.  I'm sure they are giving him the best care available

First Chemo Treatment

Well, that wasn't so scary!  Jake is still getting his first round of chemo.  They had an Xbox in his room, which kept him busy.  He didn't really want to pay attention to what the nurse was doing because he was too busy playing a game (silly boy!).  Well, whatever keeps his mind off serious stuff.

Many people have asked us why we can keep such a positive attitude about having to deal with cancer.  Some confess that they would be asking "why me" or be really upset about their lot in life.  One doctor asked how I could be so patient in waiting for test results.

The facts are, there is cancer in Jake's body and we have to deal with it.  We aren't being punished for something, we don't have a lack of faith, and we are not bad people.  It's not fun, it's not easy, it's not something we would choose to do or have, but it is what it is.  We have free agency and we can choose how we deal with our challenges.  If we get mad, sad, angry or withdrawn, will that make the cancer go away?  Will the test come back the way we want them to or any faster?  No.  If we chose to have a positive outlook, to have hope and appreciation for those who love and care for us with that change the outcome?  No, but the journey will be much more peaceful and less stressful and filled with loving a caring people.  It's much easier to see God's tender mercies when your not mad at Him.

If your child falls off their bike when they are learning to ride it, you comfort them, then you hope they will brush themselves off and get back on the bike and learn to ride it without falling.  Then someday soon, they will have the joy of riding their bikes all around and feeling the wind on their faces and feel the freedom and joy of riding a bike perfectly.  Wouldn't your child be grateful at that point, that you gave them the bike and you were patient enough to help them learn to ride it?

God didn't tell us it would be easy to learn to "ride this bike".  But He did promise that He would be there with us every step of the way.  And when we fall off, He would be there the wash off the scrapes, give us a hug and help us try again.  And someday soon, we will say, "Look Father!  You don't have to hold on to the seat anymore!"  And we will be grateful that He was patient enough to help us learn to ride this bike.  And He will be proud of us, that we learned to do hard things.

God knows each of us.  He knows the challenges that we face and how it will help us grow into the potential He sees in us.  Just like I want the best for my boys, God wants the best for us.  Even though it's not the easiest or most fun way to get there, it is the best way.  For me it's a no brainer:  Wouldn't you want the Being that knows how it's all going to turn out be in charge?  That is where I find my strength and my peace.  He gave me friends, family and neighbors to help me bare my burdens.  He gave me awesome doctors and nurses who spent time learning about this cancer so that when we brought Jake to them, they would know how to treat it.  He gave us other hospital staff that would see to Jake's every need and help him feel comfort from pain.  He put angels in my life to take care of my needs and my families needs, plus a little more.  He gave me experiences so that I could have the right kind of compassion for others who suffer.  He has kept me safe from all harm and accident.  He has surrounded me with many of His Holy Houses so that I may go there just about any day to feel of His love, comfort and guidance.  He reminds me all the time that I'm not alone, and I can ride this bike!

Tuesday, July 6, 2010

Great News!

Just found out the the bone scans are normal!  One more test to go, but it's looking good so far

Friday, July 2, 2010

Good News!!!

No cancer in the lungs! :) :) :)

New info:   The bone scan results will be available next Tues. afternoon.  He will have a central line put in Monday, the 12th, plus get a bone marrow biopsy and aspirate while he is under general anesthesia.  They should be able to rule out that the cancer has not spread on the 14th.  He will start his first chemo treatment, then go home Tuesday and get another treatment the following Tuesday.  Then they will probably go every two weeks for about 30 weeks.  He will at some point soon, have to have radiation therapy.  Surgery is not really an option as he has way too many enlarged lymph nodes and surgery would not be a viable option.  They should see some results within 2-3 weeks of the first chemo treatment.