I sit here tonight with a heavy heart. I'm so tired but I can't sleep. My mind just keeps thinking over and over, everything that is going on. I've walked in Riley's room a hundred times tonight to just make sure he's okay. And every time I see this skinny little boy who does not deserve this. Of course I can't help but wonder, why is this happening? Life is hard enough without things like this. I'm really trying not to go "there" but as I look at Riley sleeping, he's so innocent, and his shirt has ridden up so I can see his belly and that big scar across it. My heart just breaks. I know things could be worse, at least he is still here but I'm just so angry.
Things have been going so good this week. He handled chemo better then any other week! He didn't get my head cold, so far and he even road the scooter with Hunter and his friend yesterday!!! He wanted to "go play" with them. So he road 3 blocks down the street, and I was a nervous wreck the hole time. I called his friend, Colby's mom 2 times and I even walked down there once. It was a small victory and we'll take it!! Today however, he was so worn out. He didn't get off the couch but for minutes at a time. So many ups and downs, whether big or small it's hard to live life this way.
I wanted to be "a normal" family tonight, so we all went to Hunter's last soccer game. It was a fight to get Riley to go and he only made it about a half hour. I miss our old life.... I think we all do.
This is HARD.
Why do the good days break me down? I'm trying to take my own advise and tell myself that it's okay to feel how I feel but as good as Riley has done, I feel guilty for feeling down.
I'm still having a hard time with his hair falling out, not as bad as I was, but enough that I prayed the other night that it would just all fall out so that, that part of this would be over with, (and maybe be easier for me). Then, the very next day Riley had tears and said "mom, I don't want to loose all my hair". At that moment I got an answer to my prayer..... It's not about me.
Ri, I wish I could take this all away but since I can't, I will bet there every minute with you, Love mom.

Chemo day 5!

Today was Chemo day 5 and it actually went better then planned! Riley still cried and screamed and told me he didn't like or love me but I expect that every time. For chemo this time it was just Vincristine, so it was a quick one syringe drug, so they were able to access his port, draw labs and give the drug in about 3 minutes, so they didn't tape him up or take us back to infusion, they just did it all in the room. It was so nice, I think taking the tape off hurts the worst! 

Here is his blood count:

WEEK: 1  2  3   4   5    

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

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

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

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

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

   

 We are so surprised that his counts are standing strong especially after last week!!! 

Riley usually tolerates Vincristine like a champ so this week should be pretty smooth UNLESS..... he gets his mom's cold....uggg, I know, how in the world did I get sick? I have the worst sore throat and runny nose. If Riley gets it he may be able to fight it off, if not, he will get a fever and if it's 100.4 we will be admitted. Let's hope he DOES NOT GET IT!

 So I had to wear a mask to treatment today....

 And here is my wonderful support system today......

Calie!! (Kiki D) she thought she would have to hold Riley down with me, thank goodness for the other 3 nurses so she didn't have too!!! Love ya Cal!!

So I found out today that Riley's tumor weighed 6 pounds..... WHAT???? Calie is 8 months prego, so I looked at her and said holy crap, he was carrying around a baby that weighs probably about as much as yours does right now!!! I can't believe it, 6 pounds!! No wonders he......

-Didn't want to play for very long

-Didn't want to ever ride his bike and when he did he could only make it about 2 blocks before he was to tired to ride it back home.

-Didn't want to bend over and pick things up

-Always said he was to tired to do any chores around the house

-He always asked for us to do things like get him dressed, I told him he was lazy on a few occasions.

Riley always loved to swing and I noticed that he would swing for a minute then he would stop pumping and let himself come to a stop then he would just sit there for a bit, then he would start again. He would repeat this while he was swinging. Now I know, he got tired and to worn out to keep pumping. 

2 days before we found this tumor, we went up the mountains and had a little family bbq. Hunter and dad wanted to go for a hike to find some sheds. Riley decided he wanted to go too, so I started to walk with him up the hill. We didn't get very far before Riley asked if we could turn back, he was to tired to keep going. So we did and on our way back down, he said "mom, why doesn't Hunter get tired like me?" I felt so bad and I think that's when I realized something wasn't right either. 

Here is a graphic picture of the tumor outside Riley's body...... lookers beware!!! 

The ruler is 6 inches long..... holy crap!!

We are just so dang grateful that monster is out! 

Tonight it "clicked" in Riley's mind, he said " when all the cancer bugs are out of me, I don't have to go the doctor anymore?, not even on Monday's?" ..... I said NOPE!!! He got the biggest smile!! 

Love this boy!! 

I have an update on the BAKE SALE FUNDRAISER!!! Brinley brought over another $63.00 tonight, that her extended family gave her, making our total $471.58!!!! THANK YOU to each one of you!!! 

I'm excited to announce a fundraiser for Riley on July 13th, here in Salem. I will post more info as soon as I can but for now, save the date!! 

We are still so thankful and grateful for each one of you that are still praying on our behalf. If nothing else, this experience has taught us the power of praying for others.

Especially those times when I am so exhausted that I can't make it through a prayer, I know I can count on you to pray for me and my family. 

So thank you!!  

With so much Love, the Smith's!

 

Mother's Day and a great weekend!!

Today is Mother's Day!!
I was given the BEST homemade gifts from my 1st grader Hunter!! I love those gifts!! His teacher told me that he didn't fill out the line that says, "my mom cooks the best________." So she told him to fill it out and he said "my mom doesn't cook, my dad does". She laughed and said there has to be something, so after a long thoughtful pause, he said, "I guess she does make spaghetti!!" He knows his mamma!!
Even though this Mother's Day has a little bit of sadness to it, I am more grateful then ever to be a mom to these 2 beautiful boys and have such an amazing wonderful husband! Thanks for always cooking babe!!

Along with Mother's Day, this weekend brought with it..............SMILES, PLAYTIME, GRADUATION,  and BAKE SALES!!!

I am absolutely amazed at how Riley can be in the hospital ICU on Tuesday and Wednesday, then on Friday have a little bit of energy to......

JUMPING with his best girl friend Riann!!

SWINGING!!! This is the first time since surgery, my heart is so happy!!

 I think he over did it though, he threw up that evening.

Hunter Graduated and had his 1st grade program!! He was the best darn HOO-LA HOOPER on stage!!! So proud of my Hunter Bug!!

AND who are these 3 Beautiful 10 year olds????

Grace, Racheal, and Brinley!!!

These 3 wanted to do a BAKE SALE FUNDRAISER for Riley!! So they baked everything from cookies to peanut butter bars to muddy buddies, I'm sure with the help of their wonderful mother's too!! 

Just a few of the goodies!!

How cute are they??!!

They Raised...........$408.58!!!!!!!!!!!!!!!!!!!!!!!!

Riley says THANK YOU!!!!

You will never know how much this means to us. You girls have a heart of gold! Thank you also, to you wonderful people who helped support us and donated! We feel the love!! Your donations help more then you will ever know. I'm excited for one day in the future when it will be our turn to pay it forward, because I want others to feel this wonderful feeling in their heart and have tears of joy and peace because someone is able to help.

Tomorrow is another MONDAY. Just getting geared up for that!! lot's of prayers tonight that it will be smooth! 

TRIP to the Hospital

Tuesday came and it was nasty.....
Riley was so weak and NOTHING sounded good to eat. He threw up first thing in the moring then around 11:00a.m. he asked for a choc shake. So I made him one and he drank about a cup of it and 5 minutes later that came back up. Then around 2:00p.m. I made him drink about a cup of apple juice and 5 minutes later that came back up too. This was all happening while I was giving him Zofran every 4 hours. So about 3:45 he still hadn't eaten or drank anything else and was just getting sicker, I called the Oncologist to give report....... AND WE WERE OFF to P.C.M.C. for the night at least. They said if he was this sick today, the night would just get worse.
We got there and didn't even have to sign in, they sent us right to a bed and started I.V's. He threw up again that night and once more on Wed morning. BUT was looking and acting so much better Wed afternoon. FINALLY he was able to keep some pretzels and water down so about 5:00p.m., they said we could go home!!! Thank goodness because per Riley's request, I had to sleep with him in the hospital bed and I COULD NOT LEAVE him, not even to grab something to eat. So glad for the couple of snacks I brought from home and the yummy smoothie he wouldn't eat!!  But by 6:00 I was Tired, Hungry and just plain ready to get out of there!!
I did happen to get a picture of the Therapy dog that came in to see Riley.......

Obviously he wasn't giving Riley very much therapy... grumpy pants!!

Notice how Ri's not in the bed..... He only SLEPT in the bed, and not by choice either. The rest of the time he was in the rocking chair saying "can we go home yet".
They had to come in, in the middle of the night a couple of times to wake him up because his blood oxygen was so low they needed to get him to breathe better...???? whatever that means, by the time we left he was fine and getting normal oxygen. Good heavens!! SOOOO thankful for Doctors and Nurses who know what they are doing!

So thankful for the dinners that are being brought in by friends and neighbors, especially on long hard days like this!! What a life saver!! Thank you all!!

Today is Thursday and it has been such a better day already! Riley has NOT thrown up and he even has eaten a little bit! Thank you Lacei and Cafe Rio Pork!! haha!

He even got a visit from all the cute kids in his Preschool class!! They each made him a card and a cute blanket with their hand prints on it! 

Riley was shy while the kids were here, but it was just what he needed!! It really cheered him up!!

  Now, after a long couple of days..... it's nap time!! Oh look, Riley's still in his p.j's!! Ready to go!!

MONDAY......MONDAY'S!!! CHEMO: DAY 4

 I've always hated Monday's.... NOW..... I really hate them!! And so does Riley!
Today was a bad day right from the start..... Hunter fights me everyday to go to school and today was no exception. And it's not just school it's to get out of bed...to eat breakfast....to put his clothes on....to put his socks on.....to put his shoes on.... to put his backpack on....etc. etc. By the times 9:10 a.m. came around, I was done for the day!
Riley counts down the days to go to the hospital and he said on Saturday night, "mom, do we go to the hospital, not tomorrow, not tomorrow but tomorrow?" I said No, not tomorrow but tomorrow. He got all teared up and said "no, I wish we didn't have to go for 10 more days".  And of course he worried about it all day Sunday too.
At least when we got to the Hospital he didn't fight me on getting in the stroller. The fighting began in the room when we needed to access his port. And I don't mean a small fight.... It took 2 nurses, me and my mom to hold him down and he was still kicking and screaming. This is after 20 min of negotiation, be patient, bribing, me using the "mommy look", and finally just getting mad and doing it.
THAT WAS TOUGH
Not just the fight but the angry words he says to me. I know that he doesn't mean them and it's the only way he can get his anger out but it's hard to hear.

Today's poison is Vincristine (again) and Doxorubicin. 

Doxorubicin is RED! Some people pee red for a couple of days after.

Doxorubicin is a more dangerous drug, in fact each person can only have so much of this drug in their whole life. There is a lifetime max, but Riley will only be getting about 1/4 of that amount, throughout his treatments. He will only get this drug 4 times. This drug hits the system harder and can lower the blood count significantly. The other thing this drug does is causes damage to the heart muscle, sometimes it won't show up for 5, 10 even 20 years later. It also causes high levels of Uric Acid in the blood which can damage the kidneys......SUPER!  It also does what's called "Radiation Recall", which means it tricks the body into thinking it is getting radiation again and ALL the side effects of radiation come back, along with the side effects of this drug and Vincristine.
In fact this is so serious, if Riley even looks too sick, we need to take him to the hospital, if he throws up more then a couple of times or A lot one or two times, they want to see him. We have to watch for fever, constipation, diariah, belly ache, if he looks sick or doesn't act like himself: then we have to take him to the hospital and they will admit him. I have to admit, I'm a little scared of this drug!
Here are his counts:

 WEEK: 1  2  3   4     

  HGB:   14.1    12.9       ??      11.7     (less then 8 is bad)   

  Hct:    41.8%    37.8%   35%  33.2%   (less then 24% is bad)   

  WBC:  10.5      4.7         3.6    4.2   (5.5 is a low normal)

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

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

CHEMO: here we come.......

This is a huge step for Riley, he moved from his stroller to the chemo chairs... which is a big deal for him!!
After another fighting round to get his port out and 4 hours later...... we were headed home! 


 Riley's hair has been shedding like crazy for almost a week now.....the final decision to shave his hair came tonight when Ri was eating some ice cream and he looked in his bowl to find HAIR in it...!! Suprise!! So off to the salon!!

PRE- Hair Cut Pic

Not so sure about this!

All done, thank goodness!! What a ruff day!

Back of my Mow-Hawk.... oh yeah!!

Dad got his hair cut too!! He's my support system!!

He may not be Spider-man, but he is OUR REAL LIFE HERO!!!

LOOK what we did on Saturday!!

Let the playing begin!!!!

This brought tears to my eyes... It's the first time Riley's been out in the sand box since before April 1st. And he played for hours!!!

YES, that is SPIDER-MAN!!!!
Riley's best buddy Jaren had a birthday and Spider-man popped in for a bit!! Jaren told him Riley was sick and that he needed to go and "make him better"!!
Don't let Ri's shyness fool you! He loved him! AND I think it worked Jaren because Riley played the rest of the day and even Sunday! (in between rests, of course!!)

My soccer boys!!

One day, he'll be back out on the field!!

 We had a great weekend! And YES, I pulled out of my slump and got a better attitude!!

So I've been thinking.....
Riley is one of only 500 kids in the U.S. that get Wilm's Tumor each year. Well if only 2% of kids get this, and we did........
I'm going to play the lottery.... because our chances of winning are as slim as our chances of getting this cancer..... and we got it... so we would probably win, right!!! haha!! No really, we have pretty good odds now!!!!!

Emotions....Here we go......

I can't believe how fast my emotions can change....I guess it's like Ri's taste buds!!
I have to admit I've done pretty good this week, I actually felt a little bit like myself, laughing and joking around. Then yesterday Riley woke up and I looked at his pillow and there was so much hair that had fallen out. Not like he has a bald patch, but like a dog shedding. It just broke my heart.
Then throughout the day his hair was EVERYWHERE falling out
........ AND.......
throughout the day, my happiness was falling as well.
By the end of day I was on edge, even with Chris.
Riley kept asking me if it's going to hurt when his hair falls out..... "no honey, it won't!" So today I showed him his hair and said "LOOK, theirs your hair, it fell out last night!!, did it hurt?" He smiled and said no! 
I'm tired of the world and all it's happiness. I get so angry when good things happen to other people, but I get so angry when they say they are sick or having a bad day. I have to be really careful of Facebook these days! And just bite my tongue.
Last night I was on the phone with my Internet company because my Internet was out and the lady kept pressuring me and asking why I don't have a land line, why don't you have cable t.v.? Well do you want it....NO. She said "well, what is the reason you don't want it?" I said I can't afford it. She says, well we have several plans that may fit your budget......blah blah blah...... I finally got angry and said...... STOP, my 5 year old has cancer, OKAY, that is why I can't afford it and DON'T want it.
Oh man, that is probably the first time I have lost it like that....Poor lady. I'm so sorry it had to be you.
Then today an old work buddy posted on Facebook, something like, I need to hear your bad days so mine doesn't seem so bad..... In a nice way I had to respond and say "My 5 year old has cancer, feel better?" 
WHAT IS WRONG WITH ME???
It's one thing to sit in my house and think like this, but now I am acting out and saying things to other innocent by standards.
This hair things is really affecting me, worse then I thought. And I THOUGHT it would be bad. AND.... it hasn't even really fell out yet.
People keep telling me, "it's because your a hair dresser", I don't know if that's it or if it's because it's visually real.
I have some SUPER CUTE friends that have called and said, I'll grab lunch today, what do you want? And I just want to say, bring me this but I don't want to talk or see anyone. WHO AM I??? I love these girls and I'm shutting them out.
IS THIS OKAY???? Good heavens!! No wonders Riley doesn't want to leave the house, he feels the same way!
We barely left the staring line and have a whole race to finish...... I'm going to get it together!!