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!





Wednesday, December 29, 2010

No Chemo this week!

That's not necessarily a good thing.  For the first time ever, Jake's platelets were too low to receive chemo.  They weren't low enough to get a platelet transfusion, so they are doing nothing until next week.  It's suppose to be the long-day chemo, so there is a lot of juggling that has to go on to make it work.  Well, it gives us time to fatten him up a little.

Join with me in imagining a healthy, cancer-free Jake! 

Thursday, December 23, 2010

God Bless You!

Wow!  Thank you for your generous donations towards Jake's bills!  We don't know any of you that opened up your hearts and pocket books for Jake this Christmas season, so we are doubly amazed and touched by your generosity!  May God bless you doubly!

With grateful hearts,
Jake and Mom Holladay

Crazy!

Here is most of my crazy boys!  (Mike was at another table with his new BFF)

Jake is doing great right now!  He had a transfusion of blood and platelets last Friday and is feeling and looking much better now.  I think his weight is down a little (I notice this when I have to give him a shot and have a hard time finding enough fat to put it in.  I have to have him curl up in a ball so the skin is loose enough on his stomach to pinch together).  I found out that there was a shot that I would only have to give him one, after chemo.  We're going to check that out!

I counted how much time we have left with the cancer treatments.  Here is the run down:  We have 15 weeks left.  We have 6 long days (formerly inpatient) of chemo and 4 short.  We only have to have chemo once in January!  He will have his second evaluation scan on Feb. 8th (probably).  Swelling continues to go down, but...(not complaining this month so nothing here).

Thanks for your continued prayers and support!

Sunday, December 12, 2010

Chemo: Week 22

We tried something different this week.  We were suppose to do the overnight chemo this week, but in the past 22 weeks, Jake has grown to loath everything about the hospital.  We opted to try the long chemo in clinic.  We actually started the night before with some hydration.  This is Jake's nurse, Karen, accessing his port.  The pharmacy sent us some saline and it ran all night, until 5:30.  They trained me on how to disconnect the IV, so I did that and we went to the hospital.  We had to wait for about 1/2 hour for the nurses to get things started, so there is no sense going in that early.  We had to wait for the pharmacy to mix up the chemo, but all in all we were able to leave at about 6:15 p.m.  He had to be on IV fluids until 11:00 pm.  The nurse trained me how to de-access his port.  I was able to get the nurse to start the IV fluids before we left the hospital, so I wouldn't have to push saline and heparin (which makes him throw up every time.).  My aim was to keep as much food in him as possible.  I didn't even have to push the saline at 11 for him to get nauseous.  I was pretty nervous to have to play nurse...but we got through it fine (big sigh).  Jake decided he liked it much better.  It makes for a long day in clinic, but at least he gets to go home with me.

My bro-in-law, Bob invented some gel that you can use as disinfectant.  It sterilizes the area for up to 4 hours.  He has some that has moisturizer in it so we can use it for hand disinfectant.  It doesn't have that alcohol smell that makes Jake nauseous either, so I am excited to try it.

Only 18 weeks left! :)

Sunday, December 5, 2010

Dear Santa...

Dear Santa,

I would like to return some gifts I received this year.
The first is my lack of hair.  I'm done with the baldy look.
Second, you can have my numb fingers and toes.  It makes it hard to do anything.
Third, you can have my lack of hunger and taste buds.  It would be really nice if food taste good again.
Fourth, please take the pain in my stomach and the diarrhea that goes with it.
Fifth, please put the warmth and color back into my skin.
Sixth, please help me to lift my feet so I can run with my friends.
Seventh, the tumor and cancer in my body...totally done with that.
Eighth, You can have all the trips to the hospital, transfusions, antibiotic and chemo they give me.  I'm totally done with that too.
Ninth,  not loving the Neupogen shots I have to get every night.  I know they help, but if you're taking the rest of the stuff, you can totally have the Neupogen.
Tenth, all the bills...you can have those too.

This year, I just want to be healthy, like I was on my last birthday.  I would rather my mom hassle me about getting a job, rather than getting my shot. (Oh ya, and a girlfriend!)

The gifts I want to keep are my friends and family who love and care for me, my neighbors to bring me treats, all those who pray for me.  Then there are the strangers and anonymous angels who give without even knowing me or my family.  Those people are most awesome!  There were a lot of friends and family who sacrificed time and means to make things a little easier for me and my family...again, a big dose of awesome from them!

Thanks,
Your friend,
Jake

Wednesday, December 1, 2010

Chemo: Week 21

Well, this was a long day at the hospital.  Jake ended up getting a blood transfusion so we were there from 11 to 5.  Neupogen shots started up again today.  Even though Jake hates getting the shots, he realizes now that it helps keep him out of the hospital for extra stays, so he no longer protests.

Next week we are going to try getting the overnight chemo treatment during the day.  I don't know if this is going to work out, but we are sure willing to try.  I'm a little bit nervous...  I guess the home care nurse is going to come and hook him up to an IV to get him hydrated overnight.  I don't know if that means we have to change out the bags of IV all night.  Are they going to have an IV pole with a pump?  This will be a new adventure for us.

One sweet byproduct of Jake's illness is we got a call from Children with Cancer Christmas Foundation.  They have a party for families that have cancer kids and let the parents shop for a toy for the younger kids.  The next day they have Santa there and a big pizza party and fun evening for the family.  The boys all love pizza, so I think they will enjoy it.  The cool thing about my boys is that they are good friends with each other, so it's ok if they don't know anyone there.  Opportunity to meet new people!

Sunday, November 28, 2010

Thanksgiving Weekend

That was a short-lived celebration!  Counts are back down...however, the nurse said this is the normal road right after chemo.  At least we are getting away with no shots right now.  I asked if he needed them, since his counts were down again, but they said no...so there you go!  Apparently his other blood counts are borderline, so he's getting a transfusion for a bonus!  He always feels better after a transfusion, so I don't mind as much as Jake does.  He is amazingly keeping a good attitude!  Love you Jake!

Tuesday, November 23, 2010

Half Way There!

Chemo week 20!  Some counts were down but his ANC was way up...so, no more shots (this week) and he gets to go to Thanksgiving Dinner!  Yeah!

Friday, November 19, 2010

Chemo: Week 19

Jake is telling me to quit taking pictures of him.


Well, it has been a long week...for me.  We were suppose to go in for chemo on Tuesday, but they asked us if we wanted to wait until Wednesday.  We had an appointment with the Radiology doc, which was not very productive. She made us very late for chemo.

Jake hates the overnight stays at the hospital so we inquired as to the possibility of him not having a hospital stay, but just getting chemo in the clinic.  We would have to stay all day, but that's a lot less time than staying over night.  They are going to try it on our next scheduled overnight stay.  We'll see how it goes!

The best news was that Jake gained a couple pounds!  He is really trying to eat more so he can heal faster!  He still has some color in his face from his last transfusion...oh maybe I didn't mention that.  Jake's counts were critically low a couple weeks ago.  His skin was so pale!  The nurse said he needed to come in for a transfusion on Friday, so since Dave was home, I let him have a turn doing the Jake-hospital bonding time.  They gave him 3 liters of blood instead of 2 and topped it off with a bolus of platelets.  Unfortunately, Jake spiked a fever while he was at the hospital so they made him stay overnight on a regimen of antibiotics.  Jake called me and begged me to get the doctors to release him to home.  He said he hated the food, so I made him a sandwich and some jello (his request) and made the 45 min. drive up the the hospital to comfort my poor Jakey.  I had to drive home in a big snow storm and only 2 hours sleep the night before, but Jake's worth it. 

 Here is Jake, who wasn't happy because he just threw up the yummy sandwich I had brought him from home.

Chemo continues to damage Jake's body.  He continues to have more numbness in his hands and feet and is losing a lot of strength. He's trying to stay upbeat, but the treatments are getting tiring for all of us. (sigh!)  The doctors and nurses keep encouraging us to stay strong and the prayers are really helping, so thank you, all!  

Next week will mark the half way mark of chemo treatments.  April 12, 2011, is the last schedule chemo treatment.  That will be my new favorite day! (Happy thoughts!)

Friday, November 12, 2010

Letter to a friend...

Thanks Cathy!  It means a lot to me to not be forgotten.
Dave and I were talking today and I mentioned how blessed I felt that I was receiving some amazing strength from heaven.  I truly believe that people are praying for us from here and in heaven, and this gives us strength and extra blessings!

I had to give a funeral talk a few years ago.  It, in and of itself was an amazing experience.  The person that died actually came to me when I was writing the talk and told me what he wanted me to say.  He was shot and killed suddenly, so he didn’t have a chance to bid a proper good-bye to his family.  You know how the tears flow and I get choked up when I’m at the pulpit.  Well, I prayed for strength to get through that talk without blubbering, because it would have taken away the spirit I was hoping would rest upon the congregation.  I don’t know how to describe it, but it was like someone poured extra strength ability to speak without falling apart into my veins!  I was bound up with some kind of power beyond my own possibilities!  I know it was because of prayers in my behalf.

That is what I am feeling now…bound up with some kind of power beyond my own.  I feel an unbelievable amount of patience and peace.  The speed has increased in how fast principles of the gospel are being deeply rooted into my understanding and into my heart.  I am so amazed at the tender mercies I receive and I love how God points them out to me, and how he shows me over and over and over again, how much he loves me!  It’s like entering into a beautiful spring garden and he is showing me all the beautiful things he knows my heart will delight in.

Sometimes trial, tribulation and heart ache are the keys we need to use to get into these places of beauty, light and understanding, but especially love.  How interesting that these same keys open two doors…they can also open doors to despair, sorrow and hopelessness.  How awesome is it that we have the agency to choose which door we go through.

I was at a doctor’s office the other day and an older man mentioned that he wished he could go back and change his life.  I reflected on my life and what I had been through so far.  Repeat…No Thanks!  It was hard enough the first time!  I prefer Jesus’ plan…repent and start fresh…every day!  Fabulous!

When I think back on this challenging time, I don’t think I’m going to remember the worries and sad moments, or the heart wrenching moments watching Jake suffer through the cancer treatments, so much as I will remember the warm feelings, the testimony building moments, the blessings and the closer relationship I gained with my Savior and Heavenly Father.  Hard?   Yes!  Worth it?  Yes!  Would I want to do it again?  No…because I have already traveled this road and I would like to try something else…seriously!

My peace is, that no matter how hard or wretched the journey, the sweetness, love and amazing blessings are on the other end of the pendulum and are equal in strength and magnitude!

I didn’t mean to write a sermon!  It’s very therapeutic for me to write what’s in my heart.  It helps me to feel more grateful when I share, so thanks for listening. :)

Love you guys!

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.

Wednesday, September 29, 2010

Chemo: Round 12


A Note to a friend:

Jake is doing good, I think.  I don’t know what to compare him to, really.  He is still very tired and worn out after chemo, too much so to get any kind of job.  He looks extremely pale to me.  The doctors even thought that he needed a transfusion because he was so pale, but his counts were ok.  I think part of it is that he has stayed out of the sun, for the most part.  Perhaps I should make him sit in the sun for 15 minutes so he can get his vitamin D.

The great thing about Jake is he is still trying to live life!  He’s not moping around all day and complaining about the cards he was dealt.  When he feels he has the energy, he tries to play around, like he usually does.  He hiked up to Timpanogos Cave on Saturday with Austin B.  I couldn’t believe he would try such a hard hike.  He said he had to rest every 20 feet.  Austin offered to carry him up on his back (bless his heart!), but Jake wanted to do it himself.  He still wanted to feel like he could accomplish something on his own.  He never gave up!  I love that about him!

Next Tuesday is another in hospital chemo treatment (pee day).  We're back to all three chemo drugs/poisons.  The good news is that we are at the point where they will do the first evaluations to see how his body and tumor is reacting to the chemo and radiation treatments  His stomach is peeling where he has big rectangular burn marks from the radiation.  The same on his back.  He said that the creases in his leg/groin area were raw from the burns (poor guy!)  I wish there were something I could do to make it all better! (sigh!)

Today was a good day!  No bills and someone sent a donation to help with Jake’s bills.  I feel blessed!


Dear God,
I won't ask why, and I'm not mad.  
I know this will be over sometime, and I know that You know how much my heart breaks to see my child in pain.

Thanks for being there for us!  Thanks for sending many angels to help us through this!  
Some give gifts of love.  
Some give gifts of service.  
Some give gifts of monetary means.  
Some give gifts of prayer and faith.  
Some give courage and hope.  
Some give a listening ear and a hug.  
Some give words of encouragement and comfort.
Some give thoughtful gifts to remind us that we are loved and thought of often.
Some give us gifts that make us laugh.

Thank you so much for the many lessons I have learned through this experience!  Lessons of compassion and service, patience and understanding, how to be optimistic and hopeful without losing sight of reality.

You haven't told me yet, what the outcome will be, and it scares me a little.  But I trust you, Father, and I know You will do what is best for Jake and for all of us.  Sorry you have to keep reminding me, but thank You for doing it often.

Thanks for showing me how to avoid the "Pity Puddles".  It really works!  Of course, You knew that already!

I knew You loved me, I just didn't know how much!  Thank you for reminding me, again and again and again and again....  I will never get tired of the different ways You show me.  

Love,
Me

Monday, September 27, 2010

The Hike, The Cave, the Adventure...

It was free admission to State Parks on Saturday, so Jake and his friend Austin decided to take the Timpanogos Cave challenge.  They had to get on a waiting list.  I wanted to go with them, but couldn't leave when they left.  They didn't add me to the list for the reservation, I guess I'm not cool enough to go with the boys! hehe  I couldn't believe that Jake would try this, but I'm glad he did.

The hike is quite steep.  When I asked him how he did, he said he had to rest every 20 feet, but he made it to the top!  Austin offered to carry him on his back, but he wanted to make the climb himself.


He said they only had to rest a couple times on the way down, but the cave was pretty cool! I asked them to take some pics of Jake, but they wouldn't.  Thanks for being patient with him, Austin!  Jake, you're pretty awesome!

Love you!
Jmom

Friday, September 24, 2010

Happy Face!

No more shots...this week!  Counts are up again!

Tuesday, September 21, 2010

You Look Like Charlie Brown!!!


I suppose it was bound to happen. We took Jake out to eat for several reasons, partly to see if we could put some weight back on him and partly because Dave wanted to continue the celebration of completing radiation therapy. Monday is usually a good day for appetite for Jake because it's just before his next chemo treatment. There was a young man at the door, and as we were leaving he started yelling that Jake looked like Charlie Brown and how he hated that guys shaved their heads!

Sorry Jake! I'm so glad that there are only a few people are like that. Most people ask me how you are doing and are concerned for you. They pray for your return to good health. Still, there are many who don't understand that your baldness was not your choice. If it were up to you, your hair would be down in your eyes again! Then there would be those people who would wonder why you don't get your hair out of your eyes! Thanks for your patience, Jake! We love you no matter where your hair is!
Jmom

Tuesday, September 14, 2010

Sigh, cry...

Chemo round 10:  another hospital stay, another bunch of bills...30 more weeks of this!  Ugh!
I know, I know....hang in there, chin up, have faith, just keep swimming....
It's hard to keep a good attitude while you watch your child deal with getting his insides fried and getting so skinny, you can't find any fat on his body to give him the shot he needs.  It hurts enough to make a grown man cry, but he doesn't...but he winces in pain, pain that I am causing him...it's breaking my heart!

Maybe I shouldn't write about the hard days.  Not very inspiring is it.

Well, here is the part where I count my many blessings:
1.  Radiation will be over on Thursday! :)
2.  My friend, Jenene, helped me clean out the freezers...less mess, less stress!
3.  Jake has not had the worse side effects from Radiation and Chemo.
4.  The swelling is getting better.
5.  I can still get Jake to smile...most of the time.
6.  I received some beautiful flowers on Sunday to remind me that I am loved.
7.  One of my sweet Primary girls made me some cute magnets to put on my fridge.
8.  I still have Hope!

Tuesday, September 7, 2010

My boys...

Put Jake and the boys in front of a box of legos and it keeps them busy for hours!

Saturday, September 4, 2010

Chemo: Round 8

For the first time, Jake went to chemo without me!  I was ready to go, but John and Austin wanted to go with him, then go for pizza after.  It was our anniversary and I had a bunch of stuff to do, so I was grateful for the extra time off.  His blood counts were pretty low so we got to take a trip in and do a blood transfusion after radiation therapy on Wednesday.  We are figuring out what "normal" is, and I think Jake is comfortable handling this on his own sometimes.
Jake just did his labs on Friday.  All of his counts were up!  No more Neupagen shots this week!
Happy Dance!

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 learn...so 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 baby...you 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!

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.  Nevertheless...so 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 :)!