Tuesday, September 17, 2013

Famly Pictures 2013

So this has nothing to do with Riley's cancer but I wanted to post our family pictures that one of my besties took for us 2 weeks ago! Thanks Sarahwardphotography!! We LOVE them!!

We treasure pictures more then ever these days!
(I'll make comments later, for now, it's just pictures!)

Sunday, September 15, 2013

Almost done!! Week 23!! Why am I.... not me???

Tomorrow will be week 23 since we started treatments, 1 more treatment to go (in 2 weeks, week 25) making it a total of 15 chemotherapy treatments.

I remember when I was pregnant with Riley, I started pre-term labor at 17 weeks. They didn't know why. I just remember them saying, "you have to make it to 23 weeks before they will try to save your baby's life." It was such a scary time, wondering if we were going to make it. If Riley would even be born at all, and if he was, what kind of problems he would have. Then at 24 weeks, they said, "you have to make it to 25 weeks, that is your baby's 50/50 chance of living if delivered then", well, Riley is stubborn and fights like a champ!! We made it to 37 weeks!! It wasn't easy and we had weekly visits and meds etc etc. But we made it!! I think back and those weeks dragged on and it felt like we were never going to make it to the end. Those scary times were so long ago..... ...
And here we are again.... trying to make it to week 25! Weeks dragging on, sometimes really sick, sometimes doing "okay"!
Ready to JUST BE DONE!!! 

We are so close to the end and Riley is doing so good (overall). His spirits are high, he is happy and smiles and runs around crazy some days!! Scans are "good", and we have had some AMAZING experiences happen to us.
.......... So why am I ......... So not me?
Why am I struggling worse then ever?

People keep saying..... "yay, your almost done!"
but to me..... were not.
I can't shake this doubt in my heart that won't let me be happy and feel relieved. I feel like were not done yet, and I don't know what that means and it really scares me.

With this cancer, Riley's best chance for relapse is 6 months out to 2 years out. It is a very fast growing cancer, so we will get scans every 3 months. The problem is, the tumor just didn't have cancer INSIDE it, the tumor WAS the cancer, so anything the tumor touched, had cancer on it, organs, walls, thankfully not inside them, just on the outside. So the cancer could come back anywhere in his right abdomen.

I also have this fear because right now, the chemo is killing cancer cells that are trying to grow and multiply, no matter how microscopic. Once chemo is done, there is nothing fighting.

I guess as a mom, I will always have the worry that Riley could get cancer again or that over the next 7 years while were still closely monitored, the scans will come back with bad news.

I have been totally consumed with CANCER for almost 6 months now, I eat breathe and look at cancer all day. I'm really trying to see the good, but when I look at my sick (mostly) bald boy, I can't help but get down and sad. Even when he's smiling and happy and feels good, It gets to me.
All my focus is on the boys and every waking minute is devoted to them. 
My sister gets mad at me and says I need to STOP and focus on something else before I go crazy.... well, I agree, but to late, I am already crazy!

My emotions are everywhere, from one hour to the next, day to day. Sometimes I feel sad and want sympathy and other times I don't want to talk and don't care about anything but the boys. This is not good when trying to maintain friendships and a semi normal life. I feel like I'm failing in every aspect, I don't have energy to keep up and my anxiety levels are maxed out.


I'm sorry to everyone, that I have not been myself. Please be patient with me and know I am not meaning to hurt you or ignore you. I'm just trying to survive.

Tuesday, September 10, 2013

Angels and death....

A post that should have been posted in August:

Riley has told me at night time, since this all started, that, "The Angels are here." It's something that I hold dear to my heart because I truly believe they are around us helping and watching over us. And I'm so glad that Riley can see them and know they are there for him. It's so comforting.
With in the last 2 months he started to see them during the day too. In fact the last time we went to chemo, he said, "Mom, the angels are with us, they are going to help you drive so we don't crash, they protect us." And they did!!!
We even went into the Bank and he saw them there too! I was a little relieved to know the bank wasn't going to get robbed!!
I feel so so blessed to be Riley's mom. He is so strong and so special. I know when I look at him and see a little sick boy, all I have to do is look a little further and know his spirit is as strong as men. How come I was blessed with this amazing boy?

Within the last 2 weeks Riley started talking about death. He says ever so often that he doesn't want to die. He asks all the time if it will hurt. He even wanted to know different ways that people can die. I ended up telling him that most people will die when they are grandpa's and grandma's, and he got mad and said, "Well then I don't want to even grow up"!! Then he realized that dad and I are growing up and asked if we were going to die soon.
After some serious thought, he asked, "where do we go when we die?" I said, "heaven." He said, "then how will we live in our house?" I said, "we won't." He just started bawling and said "but I love my house, And I love my pillow and my bed." So I said, "okay, okay, settle down, I bet our house and pillow and blanket will be in heaven too."

I think it's crazy and sad that my now 6 year old is thinking of these things. I want him to be thinking about where he is going to play next and coloring and jumping.

As his mom, selfishly,  I want to tell heavenly father that I need my son. Please don't take him. Please let him live and be here with me. Please don't let him hurt or suffer anymore. But please keep sending the angels so he knows he is protected and being watched over.

People have told me that before we came to earth, Riley chose this as his trial and I chose to be his mom and take care of him through it too. All I have to say about that is, I'm going to have a long talk with H.F. when I get up there and make sure this cancer stuff gets cured..... real fast!!!

Monday Sept. 9th: Chemo week 22!! What goes up, must come down

Riley has been feeling and looking so good! We went to Grandma Dalley's 88th birthday party on Saturday and Riley was playing like crazy with the cousins! He ran and ran for hours! I knew his counts were up and he felt good!! Come Saturday late afternoon he was WORE OUT!! Which was to be expected! Then he started to get the sniffles......

On Sunday he was VERY congested and tired still, so we just relaxed all day. Then about 10:30p.m.  he wouldn't go to sleep and I noticed he was getting hot. So I took his temp and he had a fever. I thought, no way, he has been doing so amazing, he can't get sick that fast..... YEP he did. We ended up at PCMH for the night with a good dose of fluids and Rosephin (antibiotic).
Daddy of course wouldn't miss work, so he left the hospital at 4:00a.m. to sleep for 2 hours then go to work, while I stayed with Riley in a teeny tiny kids bed!! The railing was the only thing keeping me from hitting the ground!! Needless to say we got about 3 hours of sleep....maybe!!! 
He got a cold virus that his body is trying to fight.
I don't want to be here.... But I got a new gorilla from the nice nurse! I named him Kong!!

Monday morning at 8:00a.m. we had scans. A chest x-ray and an abdomen ultrasound, both of which came back good!!!
Then off to Chemo. They were worried about how sick he was, then to give him a hard chemo on top of it, but his blood work came back so good that they went ahead with it.
We got a Doxorubison and 3/4 dose of Vincristine.

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

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                (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               (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                        (5.5 is a low normal)

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

I am sooooo amazed at his ANC  and White blood count!!! They are fabulous!!
Even being that high, I am surprised at how sick he got. I can't even imagine what it would be like having no immune system.

As we were leaving chemo, (they released us to go home) about 12:30p.m. I had them check his temp again because he was getting warm and he was running a fever again. So they gave him a dose of Tylenol and told us to watch him and call with updates.

4 projectile vomits
Fever all day that finally broke at 9:30p.m.
One sick boy that keeps saying "mommy, I don't want to throw up anymore".
One scared and tired mommy!!!

They said that there is nothing they can do for his fever because it is a virus and the Rocephin they gave him lasts 24 hours, so even if we went to the hospital, they couldn't do anything for him until about 4:00 in the morning.
But I was to NOT give him Tylenol at every 6 hours but to wait about 8 hours in between because they needed him to fever to see how high it would get, they give him Tylenol to get it back down.
We don't want to mask the fever but we don't want him to suffer to much either.
Just watching a movie with dad!!

EVERYTHING I ever thought of with sickness is now all turned around with CANCER........
In my mind, I would rather get sick with a bacterial infection and be able to get on antibiotics and feel better sooner, rather then get a viral infection and suffer with no help.
But with CANCER, we want it to be a viral infection and still get some antibiotics rather then a bacterial infection which is in the blood stream, that Riley can't fight off very well, with antibiotics. Bacterial infection can go into the lungs and cause pneumonia and other bad infections too.

So to say the least we are TIRED!!! 

Riley slept all night last night, of course in our bed.... we had to watch him!!
Today, he is doing pretty good. He has not thrown up, but he hasn't eaten either. He has drank a little bit, but everything he tries, doesn't taste good.
We'll just keep trying!

Hunter is struggling with all of this. He is doing EVERYTHING possible to get our attention. Poor kid. I feel so bad for him and we are trying to give him what he needs, but after the last 36 hours, I have nothing left to give. He is such a good boy and loves Riley so much. He worries about him more then a 7 year old should. I love you buddy, this will all be over one day, I promise. 

All I can say is how thankful I am for good family and friends that keep checking up on us...... for my mom who has been here with Hunter, there with us, and everywhere in between, and for DINNER that was brought in last night. We are sooooo blessed!! THANK YOU!


Friday, September 6, 2013

BYU THURSDAY'S HERO: Incredible!!!!

Thursday Sept. 5th was nothing short of INCREDIBLE!!!!

A few months ago we were given the opportunity to apply for BYU's Thursday's Hero program.
And this week we were chosen and was able to go!!
Bronco Mendenhall created this program and it is so awesome!!
He personally took the time to sit down and have a conversation with my Riley, asking him about school, his favorite colors, his birthday...... He is a stand up guy in my book!!! 
Riley had to keep a hold of his powdered sucker!!! I think it was his security!!
First we went and had a little tour......
Ready to roll out!!

Am I tough enough??!!

This is where they practice football outside!!
Then we went to the indoor football field to watch the football players practice!!
It's so big!!!

They were so nice! They would walk back one at a time and say "hi" to us!!

Then after they finished practice they all huddled around and presented Riley with a bag full of goodies!!!
123 players plus coaches!!!

 Showing support and love for my Ri guy!!!
 One of the players was teasing him and wanted his sucker!!! It was so cute!!
 They gave him a signed football, a play football, #1 Jersey, hats, shirts, headphones, backpack, Bronco's book he wrote and a signed Y flag!!!

But this was the most special..... They have a team flag that they hang at every game with all the signatures on it, they asked Riley to sign his name because he was a part of the team and their family now!! 
I was so emotional and couldn't stop the tears!!
The team was so great, they all hollered and cheered!!
These BIG, BAD, AMAZING, POWERFUL players stopped to give my son some attention and kindness that he will never forget!! Both the boys will always remember this!!
After they presented him stuff, they all huddled around and put in their fists and Riley got to count to 3, then they all hollered "GO COUGARS"!! It was so unreal!! Then they all came up to him and gave him knuckles or high fives and told us "thank you for coming", what??? No, THANK YOU!!!

By now Riley was pretty done and didn't want to take any pictures!! That's okay Ri, it's been a good day anyway!! One day you'll look at this and wish you would have smiled though!!

Before we left the field, Spencer Hadley, a starting defence inside linebacker, started to play catch with Hunter!! It was so cool!! What a great guy!!! (I wish I had a picture of this, but we got it all on video!!!)

 Last but not least..... we got to go to the conference room where the players sit and discuss things everyday, and watch a football clip and a very special clip they did for Riley!!!
Thanks for making a momma cry even harder!!!
On our way out!!! WHAT AN AMAZING TIME!!!!
Thank you so very much Bronco and the team!! Our hearts are so happy and full right now!! We are on cloud 9!!

Riley is now a FOOTBALL player!! He has a per ma grin!!! He is a BYU Cougar through and through!!!

 Riley is going around the house saying "I am #1 and Hunter you are #2!!"  I think they are both #1!!

 Here is the signed Y flag that we will treasure always!! Hanging proudly right where Riley can see it everyday!!!
Bronco told Riley he can come back to practice anytime he wants!! He also gave me a hug and said "thanks"!!  We are now apart of the family and will get to do Thursday's Heroes stuff every year!
How amazing!!!
It was great grandpa Dalley's birthday and he was the biggest BYU fan there ever lived!! He has been passed away for 3 years now but we knew he was there with us the whole time!!!

Blessing sure do come right along with the hard times. You just have to look for them!!

Tuesday, September 3, 2013

Riley is 6, Started school, Labor Day weekend, and is doing better then we expected!!

We've had a lot going on, thank goodness they have been good things!! Well, for the most part!

Riley is now 6! On his birthday, he had just had his last treatment and wasn't feeling like doing anything, so we stayed home and had a few visitors! He got to choose anywhere to eat for lunch and his choice was.....
A Chocolate Shake at Burger King!!! Such a funny kid!!
He got a fun gift in the mail that day, from Grandma Smith, and a few cards as well.......
And now, everyday he asks me if he has mail!!

Riley has been doing so well, of course after we got through the throw ups!! His bum sores are gone and his mouth sores went away, until this last treatment of course! But they are gone again!!

I never imagined for my baby's 6th birthday, or any birthday for that matter, that we would be here. It's hard to believe that at the age of 5 1/2 my son started fighting for his life and now at 6 we are on the hardest ride of our lives, and he doesn't even know it.
It's a time that I treasure more then ever but wish away at the same time. I want to remember everyday and every moment yet forget all about it. I guess that's why I write, so I can forget it, for now, but always have it.

I feel like I'm cheating Chris and Hunter with my heart. Riley has it right now. I feel so much love for him that my heart could burst. I don't ever want to leave his side. I LOVE the time we spend together and I feel like I miss him, even from the other room. I have an attachment to him right now like a new mom and newborn have. I breath him in everyday and I don't want to miss a moment. For almost 6 months I have been by his side, except for 1 full day, and a few halves here and there. My heart literally aches when I go to long without him near me. And I know he feels the same way.......... Which is why........ Starting Kindergarten has been soooooo hard.

I would love to put a picture of the first day of Kindergarten, but, there isn't one.
By the time 12:15 rolled around, Riley was so anxious and nervous, he DID NOT WANT TO GO, and was a mess. He WOULD NOT get his picture taken.
I took him to school and knew I would have to stay for a bit, but a bit turned into an hour and a half. He was so scared and sad that he would not let me leave. I started to help the teacher with some things and went out into the hall to hang stuff without telling Riley and when I looked back into the classroom, Riley was looking around for me with tears and pure panic in his eyes mouthing, mom, mom. I got his attention and said "I'm right here", then he finally settled down for a minute.
I NEVER want to see that look from him again. It ripped my heart out.
When it was time for recess, I though he would run out and play with the kids, instead he came up to me and burst into tears and said "mom, I just want to go home. I'm so tired." I looked at the teacher and she said, "go, he has had enough." So we did. 
He's been through so much, not only with the medical side, but he didn't finish preschool last spring, he hasn't been able to play with friends, he hasn't been "out" in the world for the last 5 months, and he has been attached to me. Not to mention, he gets so tired so easily. Poor thing.
So, we have decided that we will take baby steps. I will go with him and gradually work my way out, (even if it takes weeks), and we will gradually increase the time that he stays in class. But for now, 2:00 is a good time to go home!
Thank you Mrs. Nelson for being such a great teacher to Riley. Thank you for understanding and helping us through this hard time.

For the Labor Day weekend, we decided to get away as a family. We were able to go to Chris' work condo again and enjoy the pool!!
And we did!!!
Ready, set, jump!!!

We LOVE to night swim!!!!
Riley kept on saying, "I'm having the best time ever!!!"

We did a lot of fun stuff, we went to the animal museum......

And we also got to see a lot of LIVE animals right in the comfort of the condo......
YES, those are TARANTULA'S and Cock Roaches! We also saw a bat just hanging out by our door, a centipede, a snake, 2 frogs but the best and cutest thing of all......
This little guy.......
 He was so dang cute!!!

If we didn't already have 2 horny toads at home already, we would have kept him!!

We also made forts.....

And Riley got to go to a restaurant!!! The last time we all went out as a family to dinner was on Valentines Day, 7 months ago. We definitely enjoyed that!!!

Of course Riley was so sad to come back home. But when we got home and he remembered he had Lego's....
and his tramp.....

and of course his pantry full of cereal....
It was all good!!!!

I'm blessed to have this boy! I love him dearly, as well as the rest of my family!!
Keep fighting Ri, I can't live without you.
Love, Mom.