Sunday, October 27, 2013

My Brave......

Along the way,  I have had many songs that have touched my heart and helped us get through this. Some of them are:
Gym Class Heroes: The Fighter
Bruno Mars: Count on me
One Republic: I Lived
Philip Philips: Gone Gone Gone
Katy Perry: Roar
and the most recent is Sara Bereilles: Brave

So with that and an inspiring friends post.......


  In 1 year Riley went from my little boy to my little man. He had to grow up way to fast.

I'm so proud of him and ALL he has gone through......

5 1/2 hour MAJOR surgery 
Right Kidney + 6 lb tumor removed (nephrectomy)
Appendix removal
2 small masses on intestines removed
2 blood transfusions
Power port inserted into his chest
Epidural for  4 days,  medicine changed out because of allergic reaction
Catheter for 4 days
Nose suction tube down to his belly for 5 days
Drain in his side for 5 weeks
6 days in the hospital (following surgery)
6 days of radiation
15 chemotherapy treatments
3 CT scans
3 Echo's
5 Abdomen Ultrasounds
4 Chest/abdomen x-rays
3 E.R. Visits
2 nights in the hospital
1 Staff/Hair follicle infection
1 Bacterial Infection
Countless Throw-ups
Several Low Grade Fevers
Loss of hair, eye lashes and eye brows
Minimal Foot nerve damage (reversible)
Eye Lid nerve damage (cleared up)
24 times the port was accessed
24 times blood work was done
Countless nights of I.V. fluids
Countless Doses of Zofran
100 doses of Septra (antibiotic for the lungs) with 48 more to go
Surgery to remove port
32 times we have driven to PCMC
3,902 miles
65 hours in the car going back and forth  

1 AMAZING big brother
1 FABULOUS husband and daddy
HUNDREDS of family, friends and supporters

All in just under 7 months....What a wild ride!!!

What is your brave?........

Thursday, October 24, 2013

Surgery.... Port removal!!!!

Tuesday Oct. 22, 2013,
Port removal!!!

To say the least Riley WAS a wreck for a bout 4 days before. He was so scared to have surgery again. He couldn't sleep at night and would ask questions all day.
Come Tuesday at 5:15 a.m. we were off to the hospital!

While in the back waiting room, waiting for them to come and get Riley, this is how he was...... SO SO nervous, he wouldn't talk, or look at anything, he just sat there and looked forward in his own thoughts for about 20 minutes. 

 About 8:15 he was off to surgery......
I call this, the Mommy and Daddy line!! We can walk 90% of the way with them, to here. Then is goodbye and see you in recovery.
This time, I didn't even cry!! I'm so proud of myself!!! Last time I bawled to the floor like a baby.
I'll never forget this line and that hall.

About 9:30 they called and said we could go back to be with him! Surgery went so good! And he woke up like a champ!!
Look at this happy boy!!! He was all smiles!!
He said, "mom, that didn't take long at all!! and It wasn't that scary!"
I know bud!! You did awesome!!

Here is the port....

He had to drink 4 oz, them we were released and on the road at 10:30a.m.!!

 We will not be seeing you for a while.......
Or the 1st, 2nd or 4th floors!!!!!

We love you PMC but we are so thrilled to not have to come back til January 2014!!!!

Riley is doing so awesome since surgery, he had 1 dose of pain meds and that is it!! He wants so badly to go jump and I won't let him.... just yet!!!!

How did we get so lucky to have our son survive? To be able to walk away at just under 7 months of hell? While so many other kids have years of treatment? How is this fair?
I LOVE these kids, I will always have a very special place in my heart for them and more.
Keep fighting, keep believing and don't ever give up.

We are not done yet, but we are moving on and it feels so good!!!
Thank you to EVERYONE who cares, loves us, prays for us, and has been there for us. We are so blessed!

Tuesday, October 15, 2013

Monday Oct. 14th..... TESTING TESTING 1,2,3..... AND NED!!!!

Today was the longest day of our lives, I swear!!!!

Riley had to be fasting for the CT and he was already hungry by the time we left the house at 8:45 a.m.
We got there and got him accessed, blood drawn and down to CT at about 10:30. Then for an hour to an hour and a half he had to drink a special "root beer" so that it could feel up his belly and bowels so they could see inside them. Once they took us back, they injected die into Rileys i.v. port, so that would go through his body too.
Riley did it like a champ!! No probs and no fights!! 

Next we had clinic at 1:00 so we could talk with Dr. Afify about his CT results and blood work, but first we had to go get some Fruit loops and a Cinnamon roll for this little guys hungry belly!!!

We were given his blood work which was:

WEEK:      1    2    3     4     5     6    7    8   9   10   11   12   13  16 19 22 25  27

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   12.2    12.2   11.7         (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     34.3    34.7   33.3       (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     8.6    3.6     4.3               (5.5 is a low normal)

PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378    329     333       311    308         (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     5.4    1.3     1.9         (less the 1 is bad, less then .5 is really bad)

But the Dr needed to go down stairs and talk with the radiologist about the CT, in the mean time we were told to go have our scheduled echo done, but that they wanted an ultrasound of Riley's liver afterward. "Because they found something on it that needs to be checked out." 
WAIT?? WHAT????  Like what?? Should I be worried? Is this bad news? 
But before I could ask, we were on our way.....

Echo..... while watching "The Croads"!!!!!

His heart looked good!!!
We check his heart because of the Doxorubison drug they gave him, it causes heart damage. But I was thinking that the damage to his heart would be the valves but I found out it would be heart failure. His heart would get slower and sluggish and not work right. But usually that is a delayed complication that happens in the next 15 to 20 years...... NICE!!!

Then at 3:30 we were off to the cafeteria to finally get lunch as fast as we could to eat it in the waiting room, which Riley could only eat a tiny bit of because of the ultrasound.
Non the less, he was happy!!!

Next was back to the 4th floor for test results........

RILEY IS NED ( No evidence of disease)!!!!!!! 
He is in remission!!! They don't say cancer free until your scans are clear for 5 years, but we will take NED!!
They found a spot on his liver that is the size of a marble, they are hoping is just a cyst. They will watch it closely every 3 months and if there is any changes we will be more aggressive but if it stays a black hole with thin walls, then after the 2 years, we will call it a cyst and not worry about it!!
It makes me crazy knowing this could be a tumor but I'm trusting the pros on it!!

Riley was AWESOME all day and even got a few fun toys!!!
Thanks mom for going with!! I know it was no fun at all!!
And thanks to Chris's mom for taking care of Hunter after school!! 

Since this is our last time coming to the Hemat/Oncology floor for a while, we had to say by to our favorite "check-in" nurse Pam!!! 
From day 1 we come in our P.J's and ride in our convertible!!! And he NEVER gets on the scale by himself! I always have to hold him them put him down then weigh myself to get his weight..... NOT GOOD!!! (for me)! haha! But this last time.... Riley did it all by himself!! I wondered when this day would come!!! He went from 55 lbs to the lowest 43 lbs now back up to 47.5 lbs!! I'd say pretty good!!

We rolled out of there and got home about 5:30 p.m. What a LONG DAY!!!
But what a GREAT DAY too!!!
My heart is a little bit calmer and I feel a heavy weight lifted off my shoulders! I CAN BREATH FOR NOW!!
I'm not sure how to get back to normal or at least "our new" normal life.  Every day is a new "baby step" for us!!!

Next week...... Surgery to remove port!! WAHOOOO!!!!!!!

BYU game!!

BYU vs. Georgia Tech.......
Yes sir!!!!!
Being a Thursday's Hero, we got to go down on the field about an hour or so before kick off, and "hang out" with the players!!!
I heard one guy in the stands say to us..... "what the heck, why do you get to go down there"...... I wanted to say back.... "when you get cancer, maybe you can!!, we will gladly trade you!!" But I kept my cool!! haha!
We even met the cheerleaders!!!
watching the team come out and huddle!!
Line-men!! They are pretty big guys!!!
Here is one of the many players that had on "Riley Rocks Cancer" wristbands!!!! I couldn't believe how many of them wore theirs!! I was holding back tears the whole time!!! Even the all stars like Kyle Van Noy and Spencer Hadley had one on!!!! It made Riley LIGHT UP every time he saw them with one on!!  They really care.
Riley always asks..... "Where's Bronco?" Like he personally knows him and wants to say hi!!
He made Ri feel like a million bucks!
Here are the flags!!! Riley's name is on there!!!
We didn't get good seats but it didn't matter!! We had such a good time!!!

We will NEVER forget these experiences BYU!!! You have really lifted us in ways no one could! THANK YOU so very much!!!

Sunday, October 13, 2013

Draggy and Pumpkins!!!!

Well, after the last treatment, Riley did okay, he wasn't deathly ill, but he definitely took longer to recover energy wise then before. Finally on Wed night he got off the couch and wanted to jump with Hunter. It only lasted a few minutes before he was to tired and had to come in. He Threw up until Friday but had a "break" of it on Thursday! By the weekend and the next Monday, he was running around and wrestling Hunter as normal though! What an amazing kid!!!

I decided Riley and I need to start separating a little bit!! We have been partners in crime for what seems like an eternity and it's time to start acting a little bit more normal!! We can't be attached at the hips for the rest of our lives!!! So I told him he needs to start sleeping by himself at night....... well, the psychologist at Primary's told us that and more, but my heart can't take full separation and neither can Riley's..... not yet!!
Baby steps!! Baby steps!!

So, about 3 weeks ago I took Riley to Costco (for the first time!!) because his counts were high enough! and he saw this Dragon stuffed animal that he wanted soooooo bad..... I told him he can't just have it, he has to earn it. So he said he would sleep by himself with "Draggy" if we could get him. (yes, this is how he earns things sometimes!!!) haha!
So I agreed..... and......
I have slept in my bed for almost 3 weeks now! And Draggy has a new bed filled with pillows and forts and lots and lots of love!! He even gets Lysol baths!! He is a part of our family and even gets buckled up in the car when we go somewhere!!
What is that you ask???........

Could that be HAIR??????

Oh yes!! And he has to spike it up at least 4 times a day!!! He loves it and has to show everyone that he has hair now!! mmmmmmm he is yummy with out without hair!!!

We also made it to the pumpkin patch with Smith cousins!!
 Heather, Ridge, Brinley, Hallie, Riley, Jackson, Hunter and Jensen!!!

 And these were the "perfect" pumpkins!!!
So..... let's carve them up!!!

They had a great time! We got done pretty late, so the final results will have to wait!!! (As Riley says, that rhymes!!) (He goes around the house rhyming all day!!)

Wednesday, October 2, 2013

Monday Sept 29: Chemo week 25 LAST TIME!!!


6 months of hell.... check!!
6 months of the greatest blessing I've ever had in my life...... check check!!

And Riley was very happy about it!! He was nervous of course, but all I had to say was "last one" and he would light up!!

So naturally, being the last day, I took pictures of EVERYTHING along the way!!!

 The waiting room! Coloring with dad!
 The room where they access his port and the doctors come in to talk!

Reading books with dad while we wait for the nurse!
Getting nervous to access his port......
 Wiping off the Emla cream (numbing cream) while crying because he is nervous!
 FEW..... it's done.... wipe the tears away!! What a brave boy!! So glad daddy's here!!

Here are his counts:
WEEK:      1    2    3     4     5     6    7    8   9   10   11   12   13  16 19 22 25

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   12.2    12.2            (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   25.1   31.4   33.5   34.2   34.9     34.3    34.7           (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     8.6    3.6                    (5.5 is a low normal)

PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378    329     333       311             (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     5.4    1.3              (less the 1 is bad, less then .5 is really bad)

Here is our most amazing and wonderful Oncologist Dr. Afify! She tried really hard to get Riley to warm up to her, even after six months, he still didn't want to!
 Me on the there hand.... I just love her!! She's from Egypt and has an accent, most the time I have to tell Chris what she's saying!!
Very last Chemo treatment!!!!!!!!!!!!!!!!!!!
Then they de-accessed him and gave him a flu shot..... not to happy about that!!

But he was very happy about the song they sang to him and congratulated him on his last time!! It was so fun! (I'll have to post the video soon!)
Then off to ring the bell!!!
 This is what the bell is for.......

And we couldn't be happier to be on our way!!!

But not without pics of the best nurses EVER!!!
 Aubrey and Kristin.....
and of course there are more, but they weren't in at the moment!! We'll catch them later!!

And look at this BEAUTIFUL blanket someone made and donated filled with a pillow case and toys.........
These are the gifts they give whenever you get done with treatment, so if you ever wonder where you donated blankets and things go...... It's to these beautiful kids who fight for their lives and after all the poking and poison, get a fun gift at the end! We will always treasure this!! Thank you to who ever "GAVE"!!!

When we got home, this is what we found........
 Riley was so excited to get balloons and an awesome poster and of course, Fruity pebbles!!!
 Thank you to whoever did this!!! And also thank you to my sister Amanda for getting the goodies below so we could celebrate!!!

This was one of the most nervous, exciting, happy, hard, scary and wonderful days I've ever had.
I'm so glad I have the most amazing husband that could be there with us today and has been there MORE then I ever imagined through this whole process! I married the best man and daddy on this earth! I love you babe!

Were not done yet.... We go back in 2 weeks for MAJOR scans, and if they turn out good, then we will have surgery the following week to take out Riley's port.

So, the hard part is done, the scary part is coming and then maybe I can lower my meds!! haha!!!!