Wednesday, May 29, 2013

Preliminary poster for our fundraiser.....

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 Riley Rocks Cancer!
5-year-old Riley Smith was diagnosed April 1, 2013 with stage 3 Wilms Tumor Cancer.



Riley has already undergone major surgery to remove the 6 lb tumor that was as big as a melon, and one kidney. He has finished radiation and is now having weekly chemotherapy treatments that will continue for 7 months. Riley’s family is now depending on only one income, since his mom needs to care for him full time.

A Riley Rocks Cancer fundraiser is being held July 13, 2013. This will include a 5k and family walk, bake sale, yard sale, auction, wrist bands, t-shirts and kids corner!

We are asking for auction items or cash donations to help with this event.  All funds raised will go to Riley and his family to help with the financial burdens that his treatment will cause. Thank you for your support. Riley Rocks Cancer! 
RILEYROCKSCANCER.COM (website is in progress! please be patient!)


More info to come.
-if you have any items for the yard sale (no clothes), please donate!! 







Chemo week 7: Memorial weekend!

Today is Wednesday and I finally have about 4 minutes to sit down and write about the last several days.
We actually got chemo yesterday because of the holiday, and it has been tough. Even though the few days before chemo,  Riley has been tired and just not feeling well, I forget so fast how SICK he really can get. Today as I have been holding the puke bucket and rubbing his back telling him it's okay and watching him get sicker and sicker, I've just been thinking over and over....
CANCER IS REAL...... AND THIS IS OUR LIFE
Those movies you see on t.v. like My Sister's Keeper, it's not just a movie, it is real and it is happening all over and it's happening to us. It just tears my heart out.

I'll give some good news though..... The blood culture came back AND...... It's negative, which means the ear infection he was getting, did not spread to his blood!!! Which is HUGE!!! We are still on antibiotics and his ear looked pretty good yesterday but I'm a little worried because he is so sick he throws up everything, the antibiotic included.... so.... we'll see on that.
He also had better blood counts, so..... NO TRANSFUSIONS!! This week anyway! This treatment was Vincristine and Dactomysin (sp), so they said his counts will plummet again, so be ready next week for them...?? maybe...??? maybe not!!  (a girl can hope!!)
Since we know how Riley tolerates this drug already, and the last time he got it, it was just a half a dose, we are prepared!! They gave him fluids and a Zofran through the I.V. during treatment and I also got trained on how to give him fluids at home!! That's right, I think I might switch my profession!! I'm becoming quit the nurse!! haha!!
Let's do this!!


So the fluids have electrolytes and potassium in it and I "hook" him up at bed time and let it run all night for 10 hours, then I un-hook him and flush his port. We will do this for 3 nights in a row, which is such a good thing because if Riley even looks at a glass of water, he throws up, so I know without that last night we would be in the hospital today.
All hooked up and tuckered out!!
Finally he fell as sleep at 1:30a.m.  I couldn't move him and the i.v. bag myself and I didn't want to wake daddy so we slept on the couch! 
I still need to watch him and report fevers or extreme tiredness/ headaches, etc. but for tonight I think we are good!
He is still holding his weight at about 45 pounds. So that's good! I don't know how, with his appetite, but I won't worry about that!
The doctors have him walk every week so they can see if the chemo has effected his feet yet and they said they have NEVER seen a kid this far into treatment that can walk as good as him!! YAY! He's doing awesome!! His hair is holding strong, but we were warned probably only another week or so with it. I'm finally okay with this..... I'm ready! Fall out!!

We had a pretty good Memorial Day weekend! We decided on Sunday to get out and go up the canyon..... not very far of course! And have a hamburger!
It didn't last long.... Riley got so tired we needed to head back home. But he did get up for 4 minutes and see what kind of bugs Hunter was catching!!

Once he got tired, he looked from a far!!
Me and my boys!!

It's been half an hour mom.... let's go!!
The most wonderful daddy in the whole world!!
Riley always says.... "Just hold me"
Don't let this kid fool you though, he is always up for a "SLUSHY" aka: breakfast, lunch and dinner! When he is feeling good!!
Not to mention "Movie Theater Nights" with Hunter and every blanket and stuffed animal he has!!

Thank you for all the calls and texts and messages we've gotten just today, wanting to make sure Riley was feeling okay after chemo. It brings me to tears to know I have such wonderful friends and people who love us. I'm sorry I can't get back to you all but just know I am grateful for you!





Thursday, May 23, 2013

3 FOR 3: Hospital visits

Well, we are on a roll!

I decided to call the doctor about Riley's ear because it was just getting worse and his temperature was still all over the map, one minute his was 99.8 then 4 minutes later he would drop to 97 then 8 minutes later he would be in the 99's again, this went on for hours. I turned the air on because he was getting so hot and it was easier to cover him when he got cold then it was to try to cool him down.
They finally got back with me around 3:00p.m. and said to go to our pediatrician to get his ears looked at then have them page our oncologist Dr. Sato. We went in about 3:50 and of course my wonderful Doctor wasn't in, so we had to see his partner.
He confirmed that there was inflammation and fluid starting to pool behind his ear, not a full blown ear infection, but with Riley's immune system it could be in no time! So after talking with Dr. Sato, they decided we needed to go to the hospital and get a blood culture and antibiotics. (SIGH).... access his port again???? When I told Riley this, he just bawled and bawled. He was sooooo sad. He said, "mom, I am very very scared." It was so sad... I cried and said me too!
We had to put the numbing cream on his port and wait an hour, so we went home and got dad and headed back to Payson Hospital. By this time we had to register in the E.R. and there were 2 girls helping us. I asked one of them if they had any experience with ports and they looked at each other and said no, and that they would call lab techs and ask them. After several minutes, they got back to us and said NO, no one had any experience with ports..... in fact, they had never even seen a port before.....WHAT??? THIS IS A HOSPITAL.....WHAT??? I was so dang mad. I said thank you but no thank you, you are not touching my son!
So we drove to Utah Valley. (I know I said we wasn't going to go there again, but we did!) Once we got there, the nurse that came out happened to be one of my good neighbors up the street! I was so relieved! I knew he would help us!! And he did, after a few calls and ultimately getting us to the 3rd floor ped's where there was a cute nurse that had some experience with ports and did a fine job!! Thank you so much Brad with everything!! It could have been REAL bad without your help!!
When we looked at his port from the night before there was a Hematoma on it. Which is a little dot of blood where the last needle was inserted but it caused swelling and bruising which could be a problem if this next port access was on it. So it was a little concerning but we were able to make it work.
We were there until about 9:00p.m. We had a run around with calls to the dr. to order the meds, then getting them from pharmacy, so it took a long time but in the end we had a dose of antibiotics and some fluid. They took a blood culture so they can detect germs in the blood and see what kind they are and possibly where they started from so we can adjust his antibiotics to get rid of the infection. They will have this tested over the next couple of days and get back with us. So for now, we have an oral antibiotic to give him everyday for 10 days.
 
When we got home, Riley finally eat some cereal!! It has been about 48 hours since he has eaten anything, so this was a big deal!!
Here is my sick boy..... but he still has a smile on his face! Love him!!



Today is Thursday and so far so good!! He is fighting me on the antibiotics but he did eat a tiny bit! He also slept in til almost 11:00a.m. ...... Sure wish mom could have too!! Oh well, at least he is looking and feeling a little bit better!

I am still so frustrated.... I spared you a lot of the little details that made this night even worse, all I can say is..... Can UTAH COUNTY HOSPITALS get some trained employee's that can access ports in under 4 hours that have heparin on hand!! GOOD GREIF!!!
I think I need a nap and a Valium!! I am just sick about the last few nights and I think I might see if there is a class to take on accessing ports so I can just do it at home then take him in!! Haha!! I wish!!



Wednesday, May 22, 2013

E.R. visit

Sick boy...CHECK, E.R. visit.....CHECK CHECK, Dinner at 10:45 Mcd's drive through.....CHECK CHECK CHECK. All of which I would like to avoid ever again!

Yesterday, Tuesday, Riley was doing good in the morning but by the time 3:00p.m. rolled around and he hadn't eaten, drank anything or pee'd. We had a problem.
I finally got him to drink about a cup of apple juice and 5 minutes later he threw it up. So I called the Doc's. They asked if he had a fever, it was 99.7. They were concerned with dehydration. So they said to take him to the E.R. They told us we could go to Utah Valley and if needed they would send us up to Primary's, so we thought that was a great idea..... closer to home and faster...... not such a good idea!
Of course, right before we left which was about 6:30p.m. he drank about 3 cups of apple juice and kept it down, but he needed more.
For the first time I looked at my little boy and SAW that he was sick, I mean really sick. He is now a CANCER PATIENT. He's loosing hair again (which stopped for the last week and a half), his eyes are very sunken in and red and he is so lethargic it's scary. His body is really bad today at regulating body temperature, he goes from hot to cold in 1 minute. He is just sick.
So we took him in and I requested a private waiting room so he didn't need to be around anyone, which they were fantastic about, then we got a room with a door! Not a curtain!! So I was VERY happy about that. The Doctor's and nurses were good until they needed to access his port. Oh man, Riley was already scared and I don't know if the nurse had never done one or if he was having a bad day, but he missed the first time putting the needle in and Riley just screamed....oh good heavens...... So we had to take it out and try again. I thought I was going to throw up I was so on edge and just sick for Riley to have to do it twice. Thank goodness it worked that time and we got anti nausea meds and fluids. About 4 hours later, we were unhooked and on our way home.

Dehydration can be serious for some kids but for Riley it's very serious, because he only has 1 kidney. When you get to dehydrated, you can go into kidney failure, so it's a big deal for us.

Thank goodness for aunt Jen for staying with Hunter and "trying" to get him to go to sleep!!
Hunter laid there and asked so many questions about what was going on with Riley. He even asked if Riley was awake when they did the surgery and cut him open! He said, "that will be good when Riley heals and his scar isn't there anymore", I said, it will always be there. And he couldn't figure out why when the doctors said he would heal and be all better!! Love him!!

I couldn't sleep in my bed, I had to sleep right next to Riley, I couldn't leave him so sick. Back ache and all, I had to make sure I was there the moment he needed me.
He was tossing and turning and winning in his sleep all night, and he woke up about 6:30 this morning with a fever of 100.5, but we were able to cool him off and it hasn't come back yet. He just took about a 2 hour nap and is now complaining that his ear really hurts and the top of his head.
I can't decide what to do, every mommy feeling I have is to take him back to the doctor, but he has no major reason to go. I just want to have him be seen to "make sure" he's okay. I guess because I have never really seen anyone this sick and it scares me. But I also know how bad the hospital scares him too.
I guess a call can't hurt anything!! I'll report back later!







Monday, May 20, 2013

CHEMO day 6! COUNTS are down

Riley took Chemo today like a champ! We actually only needed 1 nurse instead of 3 this time and he didn't even kick and scream. He did cry, but it wasn't for very long! Our ride up to P.M.C.H is about an hour and 15 minutes so at about the half way point, is when I put on the numbing cream over his port, so we are good an numb when they access it! Today he fought me on that part but it was all good! A big thanks to my driver and support system today, my sweet Angie!!

We have had a good week! Riley was down most of Thursday, Friday and Saturday but come Sunday with dad and Hunter, he was crazy!!! It's a wonderful sight! 
So we thought we were doing so good..... Until we got his blood counts today......

WEEK: 1  2  3   4   5  6  
  HGB:   14.1    12.9         ??      11.7      10.7    9.5   (less then 8 is bad)   
  Hct:    41.8%    37.8%   35%  33.2%    30.2%  27.4%  (less then 24% is bad)   
  WBC:  10.5      4.7         3.6      4.2     2.3       1.9    (5.5 is a low normal)
  PLTS:   621      288        272    347   280      288   (less then 30 is bad)    
  ANC:   7.6       3.0          2.2     1.5    1.5          .6   (less the 1 or .5 is bad)

Riley is in the "scary zone" (as I say!) with his HCT, WBC, and ANC.

The HCT is the % of red blood cells, this is what makes you tired and weak. They told us if he gets at or below 24% we need a transfusion, they said this may happen before next weeks appointment so we need to watch for extreme exhaustion and possible headaches. 

The WBC is the white blood count, this helps your body fight infection. Riley's is very low.

The ANC is basically his immune system. They call this the "soldiers" that fight infection. With this being so low it put's Riley at great risk for infection and his body can not fight it off.  When he gets to .5 they will do a transfusion. If his body gets low and the transfusions don't work, or don't get his counts up high enough, they have us give him a shot everyday in the leg to try to boost the count up.

So we were told that if Riley gets very tired or gets a fever to come in right away. They said he will more then likely need transfusions next week and we may possibly post pone next weeks chemo treatment. We are to NOT have any visitor's and Riley is NOT to go anywhere. We need to sanitize the house and every time we come in from being around anyone, we need to scrub down. 
So I guess we are on lock-down! SUPER!! That is so easy with a 1st grader too!! 

I'm trying really hard not to have a breakdown about all of this. I guess it means my child is sicker then he looks on the outside. And that breaks a my heart. It's nothing we didn't know could happen, but when it does, it's hard to swallow. 
I need to foccus on the positive things...... like his side effects that he has NOT gotten as of yet....
-Foot drop 
-nerve problems in hands and feet
-jaw pain (requires pain killers)
-major stomach pain (requires pain killers)
-Mouth sores 
-bum sores
-skin issues
-nose bleeds
 He has however had a major change in his sleep habits! He usually can't go to sleep at night for the couple of days following treatment until after 1 a.m. 
He also has body temperature changes from extreme cold to hot. In fact some nights he moves from the rocking chair to his bed, switching all night because he's to hot or cold. 

I told the boys today that we needed to be very careful for a bit and that Riley can't be around anyone in case they make him sick. Riley said "then I'll have to go to the hospital, hun?" Then let out a huge SIGH. 
So sad he knows what to expect. I'm just glad he can still give me that beautiful smile everyday! Love my Riley Roo!!! 

I'm so thankful for everyone's love, prayers and support. We're so grateful to have so many of you fighting with us. We are very blessed!  


  
  




      




 

Saturday, May 18, 2013

WRIST BANDS!!!!

Look what just arrived in the mail!!!
If you would like to support us by wearing a wrist band, they are $2.00. Please contact Chantelle Jasper Harris on facebook or channyharris@hotmail.com or Pam Barney at kpbarn25@gmail.com. They will have them ready to pick up!! There are 3 sizes, toddler, youth and adult! We can even mail them to you!! Thank you so much!!

Thursday, May 16, 2013

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.







Monday, May 13, 2013

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!

 












Sunday, May 12, 2013

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! 

Thursday, May 9, 2013

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!!

Tuesday, May 7, 2013

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!!!!!









Thursday, May 2, 2013

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!!