Monday August 19th: Chemo week 19

We just keep saying 3 more.... just 3 more treatments!!!! 
Today is one more down!!! 
Riley did so good. It was a long night though, he had anxiety all night and was scared to go. But he did it like a champ!!! 
He got Dactomicin and since his eye droop STOPPED, they decided to give him 1/4 of the dose of Vincristine and if he tolerates it then they will gradually increase the dose. 

Here are his counts:

WEEK:      1    2    3     4     5     6    7    8   9   10   11   12   13  16 19

HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   9.2   9.2   8.8   10.8   11.5    11.9   12.3                   (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   25.1   31.4   33.5   34.2   34.9                    (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   1.9   2.6   2.85   3.3   2.8                             (5.5 is a low normal)

PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378    329                         (less then 30 is bad)    

 
ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   2.2   .8  1.0   .6   .8    1.2      1.0                       (less the 1 is bad, less then .5 is really bad)


So his counts look good, his White blood count and ANC came down from last treatment, but the only one I'm concerned about is his ANC because it will continue to drop for the next 7-14 days....... AND........ that's when school starts..... 
(take a deep breath, he'll be okay)(I will be in there sanitizing)(I am that mom!!!)(SIGH)

One of my cute younger sisters got to go with me this time..... 

Thanks Ang, Love you!! 


Today is Wednesday and Riley has done pretty good. 
He had one throw up Monday night, 5 throw ups on Tuesday and so far 2 throw ups today. But he is still running around and smiling and has a little bit of energy. He even went out yesterday and jumped on the tramp!! 
I am so grateful he is handling it so much better........ 2 more treatments...... 2 more treatments!!!

The best news EVER............
After his treatments...... and scans ....... and port removal......
RILEY GET'S TO GO TO LEGO LAND!!!!!
He got his wish!!!!!!!!!!!!

We COULD NOT be more HAPPY and EXCITED!!!!! 
Thank you MAKE A WISH!!!

Thursday August 15th...... My eyes were opened....

Today was one of those days..... Perfect!!
Everything was wonderful and we had the best day! In fact the last little bit we have had such good days!
All the world was right and then.......
We found 2 bumps on Riley's head.
I felt our world slip out from under us.
The anxiety was in full force, it was all I could do to just breathe. My gut hurt so bad and I just wanted to throw up. I had to leave the room because I started to bawl, HYSTERICALLY.
I WAS A WRECK, to say the least.
I felt feelings that I hoped I would never have to feel again. I immediately went back to April 1st and could only think of the worst.... was this cancer that had spread?

I had felt Riley's head about 7:00 p.m. because I wanted to cut the straggler hairs off, which he wouldn't let me, and there was nothing there. But by 10:00 p.m. he had a golf ball sized bump on the top back of his head and a small quarter sized bump on the top side of his head. He had not bumped it and they didn't hurt. We immediately called the on call Oncologist.......
The nurse did not know what it could be, she told me about 6 times. GREAT! SUPER!! She said they don't do CT's at night so if we came in they could only do an x-ray and that may not tell us anything. She said to probably wait until the next morning and come in. YES..... THAT IS COMFORTING. Just what I wanted to hear.
Here are the pics... I promise... looked worse in person!!! 

So here were our options:
1. Just go to the E.R. to probably get sent home and traumatize Riley even more.
2. Call a neighbor with medical experience to see what they think.
3. Call the bishop and get a blessing.
We went with option 3 to start!
By now it was almost midnight and I had cried my eyes out. Of course Riley kept telling me to "STOP CRYING MOM". I tried really hard not to cry by him so I wouldn't scare him, but It didn't work out.
We got the best blessing and felt relief. I knew Riley would be okay to wait til morning to see a doctor. I slept a little bit but was up A LOT to check on him, even though he slept right next to me! I'm that crazy mom!!!

By 9:00 a.m. the large bump was almost gone and the smaller one was half it's size.
After talking to PMC we were told to go see out primary doctor instead of driving so far, then have the Dr. call them to consult.
The verdict......
Infection, looks like infection of the hair follicle.... kind of like a staff infection. It needs to be treated with antibiotics. They said Riley may have woke up tomorrow with them all over his head. We LOVE his immune system!!
I AM SOOOO RELIEVED!!!!
We get Chemo on Monday and they will check him out again. As long as they don't get worse, he doesn't get a head ache or start to throw up, get sick, or a fever..... we should be good over the weekend!

This is exactly why I can't let my guard down. ANYTHING can happen, big or small. Is this ride over yet???

I love my bald big guy!!! 

Parade and Birthday fun!!

Friday August 9th was the Children's Parade for Salem Days! They asked Riley if he would be the Grand Marshal and Ride on the Fire Truck!! Yes Sir!!!

I thought maybe Riley would be shy but he wasn't, he had the BEST time, he smiled and waved at everyone! Which made me smile too!!!

Some of the Smith Cousins came to watch!! We sure missed the other one's who couldn't make it!

Jensen, Jackson, Aunt Jo and Grandma Smith!!

 The next day Riley also got to go to the grand parade and catch candy!!!

Best parade ever!!!

Riley's birthday is coming up so we decided to celebrate with his 2 other cousins before he get's chemo again and his counts are to low to "party"!!

Riley 6, Jaxx 1 and McKayla 10!!

Above is Riley Turning 6 and below is Riley one year ago turning 5...........

My boy's not sick at all..... :(
But he is still a cute little stinker!! 

Sure had fun opening gifts!!

We had a fun partying with these crazy kids!!! (from my side of the family)

Just missing Brage and Logan!

 

Come Monday August 12th, with no chemo this week.... 
We went to 2 movies:
PLANES with the Smith side
and EPIC with Grandma Larsen and Aunt Amanda
Thanks Grandma's and Grandpa's!! We love you!!

If not but for 1 week, we felt like a normal family who goes out of the house and does "stuff"!!! We are so grateful for these times!! We definetly lived it up!!!

Fundraiser Pictures.... It really was EPIC!!!!

Here are a lot of the Fundraiser pictures!!!!
Thanks to my sweet friends Sarah and Emily for taking them!!!

These are the best friends anyone could ask for in the whole world!! Thank you to each one of you and your husbands and family for helping and making this so special for us! 

YARD SALE:

 We had so much stuff!! THANK YOU to everyone who donated items!! It was amazing!! We had a huge enclosed trailer full, and a 1/4 of another one! Thank you Vantasels for letting us use your trailer! Also THANK YOU for everyone who came at 5:00 a.m. to help set up, plus the night before to help sort and price! We COULD NOT have done it with out you!!

This fabulous beauty on the Right is Lacei! She stored items in her 3 car garage until it was time to move them! And It as packed full!!! Thanks girlie!!!

 My cute Aunt Linda.... She helped man the yard sale all day! Her and her husband also came the night before to help sort and price everything! THANKS A MILLION!!

 Chantelle and my sister Alicia! They also helped all the night before and day of!! THANK YOU!!

5K:

5K help.... My sister Angie and Heather!!!

 Getting ready to make my speech in front of all the 5K runners...... I'm a LOT nervous!! Thanks Angie S. for putting this together, it was so unbelievable!! You are amazing as well as EVERYONE who ran it!! 

All the 5K runners!!! Ruffly about 285 of them!! I was at the end high 5ing them and cheering them on..... Hunter ran it with his cousins and Riley came to see everyone off then had to go back home for a break with dad!!
Can you find yourself in any of these??!!!

Riley dropped by for a visit after the runners took off!! He wasn't feeling the best.

Sky Hawk Mascot!! Thank you so much Abush!! I know it was extremely HOT under there!!

Our Wonderful helpers!!!

There are so many more pictures during the race that I have and will always treasure!!! Thank you to each one of you for running for Riley!!!

BAKE SALE:
I am not kidding when I say YUMMY!!! I have never seen so many yummy beautifully decorated treats in my life!! Thank you to EVERYONE who slaved over baking for us!! It was a huge success!!! 

 These beautie's are Jenn, Ashlee and Kelleye!!! THANK YOU!!!

KIDS CORNER:

 These 2 fabulous women in the Yellow shirts...... above Cari and below Lindi, they pulled off the Kids corner, that was so amazing!!! Thank you for all you hard work and hours that went into this!! Also, thank you to the other amazing people who helped with the booths!!! RILEY LOVED IT, (for the little bit he was able to stay!!)

 We had the best characters there....... What more could kids want then these..........

 And we can't forget the snow cones!!! Since Riley LIVED off of them for months!!!

 And this booth was made special for Riley by our (9 year old) neighbor boy..... Mr. Beckstrand!!! Thank you for making these awesome rifles to sell and donate the money to Riley!! They sold out so fast!!

 And COSMO......!!!!!

 And we can't forget these 2..........

The Johnson's along with the Cole's ran the food!!! Hot dogs, Chips and a drink!!! THANK YOU so much!! And thank you to Coke for bringing us a trailer and the drinks, juices and cups!!
Just amazing!!

AUCTION:
I have to say, this was the most amazing and organized auction I have EVER seen!! My beautiful friends did it all and it turned out simply fantastic!!!
We also had the most generous people and businesses donate items that were unbelievable! So many great people in the world! Thank you! 

  Katy, Abby, Sarah, Calie, Katie and not pictured are Marie and Pam!
SILENT AUCTION:

 LIVE AUCTION:

What an incredible 5 hours!!!
We are so blessed to live in this amazing town with amazing people that came to help one little family.  THANK YOU so much!


Riley's cute cousins did a Raffle for him down in their home town then brought it to the fundraiser and drew the winner there!! A HUGE thanks to Marcia for making this beautiful blanket to raffle off!!

Adri and Tanner.... we sure love you!!!

 Our cutest "old" next door neighbors that we miss dearly, ran their own race in Texas...... We sure miss you Johnson Family!! This was so touching. Thank you!

Macie, Eden, Ginnie, Kalab and Abrie!!