Week 11..... NO CHEMO!!! Dr. Pepper.... You betcha!!!!

Today is week 11 and NO CHEMO!!!
We have been going to Primary Children's Hospital every week, sometimes several times a week for the last 13 weeks solid. I'd have to say we've come along pretty good!! 
As a reward Riley got a Dr.Pepper!! haha!!!

AND......
Another stroller ride!!!

Love the crossed legs and hidden face!!

His requests are simple and easy! We've had a good day today!! Just liven it up!

Go'en strong!!

It's Sunday evening and Riley is a trooper!!
We've had a turn of events at our house..... A LITTLE BIT OF ENERGY!!! We even got out Friday and Saturday evening for a walk in the stroller!!
It was so good to see neighbors out and about and say hi for a second!! (of course from a far!!)

I know what you are thinking....
1st: who took the picture and cut my head off?!!! (DAD)
2nd: does that kid ever stop playing games?!! (YES)
3rd: Does he ever look at the camera and smile?!! (NO)
HaHa!!
It makes my heart happy that he is doing so well! And it all started when Hunter got home! Friday Riley was a different kid!! He missed his brother so much, when he had energy, they would play and when he didn't, they would sit on the couch and watch movies! They built a fort in Riley's room and wrestled on the ground a little bit!!
The bad news..... Hunter was up Friday night with an ear infection. (sad face) So Saturday morning I took him to the Doctor and sure enough it was yucky, so was his throat. He is on an antibiotic and we have once again sanitized everything in sight, so hopefully Riley won't get anything.
I'm not going to stress and worry over something that hasn't happened and may not happen! So we are good!! I almost had a breakdown after leaving the doctor's but I kept my cool and were pushing forward!!
Riley will get a CBC tomorrow morning from a home health nurse that will just come here, and he will get de-accessed as well! Riley is already crying over that. But he'll be happy when he can actually have a real bath and not just a sponge bath!!
Riley asked today if we had to go to the hospital tomorrow.....
NOPE!!! We are on a 2 WEEK BREAK BABY!!! Were going to enjoy it!!!! 

Shirts and toes to match!!!

We have SHIRTS!!!!!

THANK YOU Outback Graphics in Salem!! You did an awesome job!!!

Toes to match......

YES PLEASE!!!

 Thank you for the toes Meg!!!  And thank you Angie for the shirt that you designed!! AMAZING job!!!!


And here is the shirt I designed......

I'm thrilled with both of them!!!
Sorry though, this shirt is not for sale! Family and Friends only!!

A few good Racers!!!

Who are these racers that run for those who can't?..... 

One of my fabulous friends and neighbor Bethany Erickson ran the American Fork Canyon half Marathon & 5K a week ago. Here is the poster from it. 

Touches my heart! Everyone of them!

  I didn't realize there were 2700 runners and each one of them submitted someone with Cancer and their story and picture. Out of those, only about 10 or so were chosen to be put on the big poster for inspiration for the runners..... Riley was one of them. What an honor. What an honor.

 She carried a picture of Riley the whole way!! Thank you Bethany!! 

You make me smile every time I see this pic!!!

Other fabulous runners were Angie Snow, Ashlee Henrie, and Katie Kilpatrick. LOVE LOVE LOVE these wonderful girls!! Thank you! What a huge honor!!

Angie, Bethany, Ashlee and Katie!! You made us proud!!

AND:

 This weekend is the Wasatch Back Ragnar Relay for Cancer!

I have an amazing friend Mace Crane who is running 17 miles of this race and has chosen to run for Riley. I have been so touched by this especially because I haven't seen Mace in 16 years or more. I went online just now to watch the video of everyone who is running with him for the cure against cancer and I wasn't prepared... I just bawled my eyes out. My heart is so full and thankful. The tears won't stop. Thank you Mace! Were cheering you on from home!
Please go to the blog and see these wonderful people!
http://www.piratesforthecure.blogspot.com/

After I get pictures I will post them!!  

I'm going to personally commit to get in shape and start running for good causes like these. (I HATE running) But I'm going to anyway! Once I have a cancer free boy and have the time, of course! Wish me luck!!

Tender Mercies: Roller Coaster!

Well we are on day 4 and all I can say is thank you for your love and PRAYERS!!
Riley has not had to be admitted all week! This is not by chance, it's a miracle! A huge Tender Mercie from above because he knew I would not be able to handle it.
It's not to say Riley hasn't been sick, he has had minimal throw ups each day and VERY tired, but NO FEVERS!!!
I'm still giving him 12 hours of i.v. fluids a night and meds through his port as well. I'm thrilled at how well it's working out! 
We still go to get snow shacks everyday, sometimes 2 times a day. It's the only thing tollerated really well. Sorry all you snow shacks but Payson Glacier Pass takes the cake for now!! This changes with his appetite too though!! 
I have a lot of people offer to bring us one, but to be honest, it's the only time we get out of the house! It's not easy, sometimes he doesn't make it without falling asleep.....

Poor little guy. This is how tired he is at home most of the time too.

Even though it hasn't been as bad of a week as I had planned, I have been SUPER emotional. I'm back to the "I hate" and "I'm mad" phase. I cry over everything. Riley even said today, "mom, why are you crying?" I said because I'm sad you have cancer, no I'm mad you have cancer. He said, "well stop crying", haha! I guess I need to get it under control!!
I miss my life. I miss doing hair, and my clients who were not just clients but my friends. I miss being able to help provide for my family. I miss taking the kids to the swimming pool and playing outside with them and their friends. I miss sooo much and I don't want to wish this year away, but I do.

No worries next week I'll be on the "I can conquer the world" phase!!
I HATE THIS ROLLER COASTER!! I WANT TO GET OFF!!!

Chemo: week 10... I'm scared....

WOW.... 10 weeks!! I can't believe it's been 12 weeks since we were first diagnosed and 10 treatments behind us! 
And we don't have to go back for Chemo again until JULY 8th!!! This will be our FIRST break!! and we are thrilled! Riley was crying for 45 minutes this morning asking why we had to go today. He said "this is taking so long", "when will we be done with chemo?" How do you tell a 5 year old a time frame and make him understand? 
When we go back on July 8th, we will get scans. He will get x-rays and an abdominal ultrasound. They said not to worry about this scan because more then likely all will be well and we will continue our course of action. If it's bad news, we'll change our treatments. Here's praying for EXCELLENT scans!! 
On July 7th we will have to get a CBC (complete blood count) so we make sure Riley is strong enough for the chemo on Monday. 

I'm not going to lie.... I'M SCARED for this week. I'm trying so hard not to have a breakdown, here's why: We got  Doxorubicin and Vincristine today. Doxo is the really strong one that ended Riley in the hospital last time. He was SOOOO sick and his counts were a lot higher. Doxo will drop his counts dramatically, and they are low today already. In fact so low, he barely passed the ANC limit to get chemo at all. He has to be above .75 and he is at .8 It is very concerning. Here are his other counts: 

WEEK: 1    2    3     4     5     6    7    8   9   10

  HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   9.2   9.2                          (less then 8 is bad)   

  Hct:    41.8%    37.8%   35%  33.2    30.2   27.4    28.6   29.7   26.5   27.1                             (less then 24% is bad)   

  WBC:  10.5      4.7         3.6      4.2     2.3       1.9   6.3    3.7   3.9   2.8                                    (5.5 is a low normal)

  PLTS:   621      288        272    347   280      288   466   168    265   475                                 (less then 30 is bad)    

  ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   2.2   .8                                     (less the 1 or .5 is bad)
 (sorry I can't get these numbers to line up just right)

So pretty much Riley has a very low immune system and it will just get worse after today's treatment. We are worried about his ANC, WBC and his HCT this week. 
We are on "LOCK DOWN" again! yay!!!

Look at those 2 hairballs!!! Thanks Pam for making us this cute sign!!

They left Riley accessed so I could give him fluids every night for the next 7 nights over a course of 12 hours each. It will include the electrolyte's and potassium, and I am also going to give him zofran through the i.v. so we can stay on top of the nausea and throw ups the best we can. But since his immune system will be gone, he won't be able to fight ANYTHING off, so he will probably fever this week. We have had some bouts with fever but nothing that lasted long enough and high enough to put him in the hospital, so this will be new for us. 
In non medical terms, they pretty much said get your hospital bags packed and we'll see you soon!! 

Here is our supply for the week!

We also had to talk to the dietitian today. Riley has kept a pretty steady weight this whole time but he is slowly going down, so we want to get on top of it asap. If we don't keep this weight until the next time we go back, they will put him on a nutrition supplement which kick starts his metabolism so he hopefully wants to eat more. But for now, we are to by half and half and whole milk to use as his milk for everything. We need to put EGGS in everything, slather BUTTER on thick and even get some PROTEIN supplements to add to things. However, we have to be careful of the protein we add because it can cause your kidneys to over work themselves and with 1 kidney.... that's not good! 

So the EASY PLAN IS.... to control throwing up, keep fever down, get him to eat and drink a ton and not damage his 1 kidney in the process...... GOT IT! I'm feeling the pressure! 

A DR. PEPPER is accepted any time day or night!! Maybe even a little bit of chocolate! 

I'm so grateful to everyone who is so willing to take Hunter. He is going to aunt Denise's for a few days which will be a huge help this week. She was my fabulous support today and I totally forgot to take a pic of us... I'll do that later! She has a heart of gold! We were both so emotional, but a good pair non the less!!!
But don't worry all you other aunts, friends and grandma's.... I'll be calling soon enough!! 

Please keep us in your prayers this week..... I'M going to need them!!

CHEMO Week 9: BEST week in a LONG time!!

I guess I should finally post about chemo this week!
We have had such a good week, I've been trying to enjoy it, and get caught up on all the other normal things you do in life!!
This is the first "NORMAL" week we have had in about 6 weeks!!! 
Riley only threw up 1 time and that was on Tuesday!! He's still not eating a ton, but it's still more then he has!

Monday went very well!! Riley did so good, he just cried a little bit, I think more out of fear then out of hurt.
I do that sometimes too!!!
We just got Vincristine this week, so it went pretty fast. We didn't even have time to get the labs back and printed! So they read them to me over the phone. Of course I can't remember the exact numbers but I do know his low numbers he has been having, went up a little bit more!!! But his hematocrit (red blood cells) went down even more. So we are to watch him this week for that. It is 26.5% and transfusion time is when it hits 24-25%. We need to watch for extreme exhaustion and head aches. Not like he isn't tired already, so this will be tricky!!
I got to bring along Chantelle!! She is another valuable team member!!! She is super supportive and caring!

Love her!!

This is one of our wonderful Doctor's, Mariko Sato! She has been amazing through this whole process and just told us she is leaving next week to go Texas and specialize in brain tumors......WHAT??? Your leaving us? I am SO not okay with this! We love you....

Riley loves you too, he just doesn't know it yet!!!!

We wish you well Dr. Sato and will miss you so much! I can't wait til the day when I email you and say Riley is Cancer Free!! Thank you for your endless hours of caring and support! You will be missed!

The boys each got a hat from their aunt Denise and family!! They are so cute! Hunter's says: "Hunter Rocks" and Riley's says: "Riley Rocks Cancer". They LOVE them!!

Thank you Aunt Neice!!

Our Cute Smith side of the family did a bake sale where they live, which is Chris's "home town!" AND they did AWESOME!!!!

$264.00 BABY!!!!

We weren't there so I personally didn't get any pics of Riley's cute cousins baking and selling the goods, so hopefully soon I can get a picture from them to put on here!! A HUGE THANK YOU to Heather, Brinley, Hallie, Ridge, Tanner and Adri..... AND of course their mom's and grandma!!!

The time and effort that has gone into this bake sale AND all the other fundraising events that have happened and are happening is so unreal. I have had my eyes opened to a whole new world where there are good people and it isn't as crappy and selfish as I once had thought.
My family has taken up A LOT of other people's precious time with this upcoming fundraiser that I am feeling very guilty about, yet VERY appreciative.
You have not and will not go unnoticed!
I'm thankful several times a day for everyone and amazed at the support system we have.
We live in the BEST place on earth!!

Look what we did this week!!!! Carnival and ZOO!!!

Riley has had a pretty good week, he stopped throwing up on Thursday and we had 0 hospital visits!!! YAY!! But the best news of all is Riley's was giving the "okay" to go to a couple of events this week!!
Thanks to the CCCF, an organization that accepts kids with cancer and their families and gives a fun carnival in the summer and a Christmas party in the winter, but most of all, a chance to meet other family's that have cancer and have support through them!
We went on Wednesday night to a BBQ dinner and carnival!! The boys had so much fun and even though Riley had to stop and take breaks, and we ended up carrying him most of the time,  it was so worth every minute!!

Being shy for the camera guy!

There's that smile! 2 cute brothers!!

Not sure if he wants to play a game yet! But he's ready to rock n roll in his angry bird jammies!!

Now he's ready... let's do this!!!

Look who else came!! As well as some BYU Basketball players!!

Okay, I'm ready to go home now!

 Thank you so much CCCF!!


After "our first" outing in a LONG time!!! Come Thursday, Riley was VERY tired! He couldn't walk from the couch to the kitchen without complaining that his legs hurt. So, we spent most of the day resting!! 

Friday night though, we were off to Hoggle Zoo!!
Primary Children's invited us and other family's with sick kids for a night out!! From 6-9 the park was ours!! It was so nice to look around and know that everyone was "kind of" in the same boat as we were. There were all kinds of sick kids there and it brought a smile to my face to see each of them laughing and having a good time even though they too were battling and fighting a fight of their own. We weren't alone! And it was nice that everyone there was GERM conscious too!!

Riley had a hard time at first, he didn't want to get his picture taken with any of the AWESOME super hero's or Star Wars guys....

Yep, a little ticked off!!

He just wanted to watch from a far! I've never seen this kid so skinny.

But Hunter was right in the action! Loving every minute of it!!

Mom got a sneaky picture when Riley wasn't paying attention!

Riley's favorite was the monkey, maybe because he is one!!

He also loved the Rhino's!

 Now I know I've said Riley hates pizza, but his taste buds are still out of whack, and today, he wanted pepperoni pizza and Mac n Cheese for dinner!! Hey, if you'll eat it, you can have it!!!

 Ri was getting so excited, he even got out of his stroller a few times to check things out!!

Starting to get tired, about time to go home!

 We had such a fun time. When I get rich, I am going to donate my money so sick kids can get out and have just a smidge of a normal life at a fun place like this too!! Thank you PCMC and who ever donated for this event!!

Even though we had 2 fantastic outings this week, I'm not going to lie, this life is hard. Riley's body can't shut down at a normal bed time, so we are up sooooo late every night. He ranges from around 1:30a.m. to 3:00a.m. every night. Then sleeps til around 11:30 the next morning. I'm trying to keep up, but having another active kid, it's hard. I'm so sleep deprived, I feel like I have a new born!  He also eats best at night, so at 10:30p.m. when he says he wants a slushy, we go to the gas station! Or when he wants Mac n Cheese at 1:30a.m., I make it! The other night at 2:30a.m., he wanted spaghetti with meat balls....!!!! That's where I drew the line!! haha!!
Good thing we only have 2 kids... I would be in a world of hurt if I had to keep up with more!!!
Oh, what a life!!! I love my boys! All 3 of them!!

Official Poster for the FUNDRAISER!!

We are so excited for this event and ready to register for the 5K and take orders as well!! A list of auction items will be up in the next few weeks as we are still collecting items. Go online to rileyrockscancer.com to see our wonderful and generous sponsor's!! A HUGE thank you to Jared Triptow for donating and creating the website!! It is amazing!! Also, my dear friend created this awesome poster for us, Emily Dyches!! Thank you so very much!!
I have so many other people to thank, don't worry, I will get to you!! My list is so big, it will take me a while!!
Thank you in advance if you come and support us!! I've been very hesitant to have someone do a fundraiser for us because I know there are a lot of people out there that are suffering financially as well. So when I say we appreciate you, we do from the bottom of our hearts and we have been humbled to get to this point. We are forever grateful for you.

PEOPLE ARE GOOD!!!

CHEMO: week 8, nervous habits!!

Today was a really good day! 

Since Riley was still accessed, we didn't have to fight to do that but he was very scared to de-access him. I think he asked me 1000 times if they were going to "take out" his port! It just hurts so bad to get the tape off and he just cries.

We only got Vincristine today which is wonderful, maybe we can continue to climb out of this low count we've been in! 

After our VERY RUFF last week, we are surprised his counts are doing good! His low counts we were worried about transfusions on, came up! And his high counts that we have never been worried about, came down, but still at an okay level. 

WEEK: 1    2    3     4     5     6    7    8

  HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   (less then 8 is bad)   

  Hct:    41.8%    37.8%   35%  33.2    30.2   27.4    28.6   29.7 (less then 24% is bad)   

  WBC:  10.5      4.7         3.6      4.2     2.3       1.9   6.3    3.7    (5.5 is a low normal)

  PLTS:   621      288        272    347   280      288   466   168   (less then 30 is bad)    

  ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   (less the 1 or .5 is bad)

His body amazes me everyday. He is so strong and fighting so hard.   

His platelets are the lowest they have ever been but not to worrisome yet. If he bleeds and can't stop for 10 min then we need to rush to the hospital but other then that we are good.

  

The Doctors are very concerned about his constipation and the hard stool he had on Friday. Vincristine is the drug that causes this and we still have 2 more solid weeks of it. So if Riley doesn't get drinking with a TON of mirilax.... and keep it down, in a couple of days we will be in the hospital "cleaning him out". Which means a NG tube down his nose to his stomach so they can push meds through and have him poo until it is runny like water, which takes about 24 hours. NOT FUN and very TRAUMATIZING. So let's get praying for poo!! haha!! No really!! 

Riley has picked up some nervous habits since this all began..... he picks at his lips until they bleed, which drives us crazy!! He also bites his fingernails..... nothing like a germ fest going right in his mouth! He also grinds his teeth all night long..... that with sucking his thumb still, we will have a whole lot of dentist visits soon!

He has picked up quit the vocabulary as well...... the words he uses when he is mad or angry or sad is.... I hate you, your stupid and your an idiot. I DO NOT know where he got this from. Probably me.... saying I hate cancer! But he says it to everyone and EVERYTHING, from his crayon to his toys to his shirt that he can't get off. 

I just have to let him vent and get it out and try to say things like.... you don't hate it, you just don't like it or you are just mad and that's okay to be mad. I fully understand this is his way to express how he is feeling but when your sick 5 year old that you take care of 24-7 says I hate you... it can get hard. Daddy is a softy and it tares him apart but 4 minutes later when Riley calms down and runs to you to snuggle and says I love you...... It's all worth it again!! 

I'm so grateful for everyone involved in our lives. We COULD NOT do this without you. I am so amazed at the community and the love and support we have received. I can't express to everyone who is involved in this amazing fundraiser how THANKFUL we are to have you and we appreciate all the hard work and time you have spent already. My dear friend Angie who is the captain of this and has put her heart and soul into it to make it all happen is absolutely wonderful and fantastic in every way!! I love you all and will gladly spend the rest of my life paying it forward...... all because of you!! Thank you!! 

Night 6 of fluids!

Tonight will be night 6 of fluids. Riley Finally stopped throwing up Friday night!
He actually was able to eat 2 chicken nuggets Thursday night and keep that down then Friday night he eat 3 peaces of bread, and Saturday he eat a small pancake!! But he just isn't able to drink enough to stay hydrated, so we still have to give him 10 hours of fluids each night.
This has actually been a life saver!! No hospital visits this week!!! Thank goodness!!!
The bad part is.... we can't get his miralax down him so his last bowel movement didn't go so well. Poor guy!
Saturday morning Riley had a low grade fever but by the afternoon he was in the clear. This was hard for me because it was my beautiful baby sisters wedding 3 hours away and I wanted to go and support her but I didn't know if the fever would climb and Riley would be in the hospital or not. I knew though, he was in good hands with the BEST father in the world taking care of him, so Hunter and I decided to go and I would just have to get a police escort/ very large speeding ticket home if needed!!
All worked out and besides my anxiety all day, everything was wonderful!
Today Riley has been tired and can't seem to find anything to eat or drink that tastes good. So we have a sampling table at our house! He took a really good 2 hour nap.... at 5:00p.m. so we'll be up late again tonight! This is a good start to a long week ahead!! Oh well!
Thank you to my wonderful partner in crime, Chris! I love you babe! You amaze me everyday at your love for your family! You pick up where I lack and keep me going when I just can't do it anymore. I knew I picked a good one!!!