Week 3 of Chemo..... 1 month since Diagnosis

Monday April 29th, 2013:

I'm a day behind but Monday Marked the 3rd week of Chemo and 1 Month since Riley was Diagnosed. WOW, 4 weeks went so fast, but yet so dang slow. In fact I can't remember a whole lot about the first 2 weeks.... probably better that way, at least for now!
Turned out to be a really LONG day....
We met with Dr. Meyer's and it was finally time to get the drain out!!! YAY! ....... Not so much.... It REALLY hurt when she pulled it out..... AND..... I almost threw up!! I knew a nurse was not my calling in life!! haha!

I am absolutely amazed at how well Riley has healed since surgery. I don't know anyone who can have this major of a surgery and be out 2 weeks and 3 days later throwing the football. He is such a fighter and doesn't even know it! I am so proud of you Ri!

The surgeon said we are good to go and we don't have to come back until after chemo treatments when it's time to take the port out. So off to Chemo we go!

On the elevator up to the 4th floor Riley was getting really scared and kept saying, "mom, after I get my Chemo, can we go home?" I said yes. While all the other elevator passengers looked at us with such sad eyes.... I guess it's not everyday you hear a conversation like that in the elevator!
We got there and it was such a fight from the minute we walked in.
HE IS JUST DONE..... and we have 22 more rounds to go.

This is how he ignores everyone!!

It is so exhausting. Riley knows it's going to hurt, so how do you comfort him when he is crying and screaming and won't let you or the nurses lift up his shirt to access his port. He is so strong. I was SO grateful to have Chris there to help me today. Riley LOVES daddy but he was fighting him too. We all had to pull together and finally hold him back and just do it. (BIG SIGH) (only 22 more, only 22 more).

Here are his counts this week:
WEEK: 1  2  3      

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

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

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

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

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

His Whit Blood Count and ANC are pretty low. These 2 are the ones that determine whether or not we do Chemo that day. If they are to low, we will postpone for a week. The ANC is pretty much his immune system. Once that gets to low he can get a bad infection, fever, pneumonia, etc. all of which will put him in the hospital. I feel like we have done such a good job at keeping him away from people and germs and he's still low. It amazes me how fast he can get sick and how fragile he is right now. Next week scares me even more because his counts will be lower from today's treatment and on Monday he will be getting the hardest drug and a higher dose then he's ever gotten. Which will deplete him even more. (so don't get mad when I don't answer the door! We need germs to stay outside!!)

After a long 4 hours at P.C.M.C. we were exhausted!!

Daddy gets to ride with Riley while mom drives!

We have some amazing friends who own Western Heating and Air, Ryan and Angie Snow. They came to the house and donated/installed a "blue light filter" that kills germs and bacteria as it flows through your furnace. It keeps your house cleaner, free from dust, and was exactly what Riley needed for his immune system. Thank You so much for doing this for us!! 

TUESDAY NIGHT:

Riley has done wonderful the past 2 days now! He gets spurts of energy then crashes on the couch!! His appetite is very decreased but were trying to stay up on it! His taste buds are all over the place and what was good yesterday or for the past 3 days, does NOT taste good today! Even a Fruit by the Foot!! 

Love my little trooper!! Even when we've watched Madagascar 2,500 times!!!

Isn't he beautiful!! Hair's getting thinner but not gone yet!

No throw-ups!!! Hunter is an amazing brother!

Well, it's Friday night and I have to say this week has been a lot easier then I anticipated!
We have been Throw-Up FREE all week long!!! YAY!!
I don't know if it is because he only had the 1 dose of radiation, or if it's because this weeks chemo was just the Vincristine drug and not the other one too, or just a whole lot of prayers......but whatever it was, we have been so grateful for it!!! Riley's energy level is slowly declining, in fact for the past 2 days he hasn't moved off the couch, except when I make him. I just want to make sure he's not depressed or in a rut, so I have been encouraging him to go outside for just a minute ever so often. He does get a little bit more active when Hunter comes home from school, but slowly makes his way back to the couch! His favorite movies right now are: Ice Age 3 Dinosaurs and Madagascar 3. And his diet consists of CEREAL, Gatorade and Apple Juice. With the occasional Vanilla Ice Cream!!  He munches on other things every now and then but I think his belly tolerates the cereal really well.

Ri got in trouble yesterday when I gave him his VERY IMPORTANT 2 day a week antibiotic called Septra. (This helps him so he doesn't get a dangerous form of pneumonia. He actually has to take this all through chemo and up to 3 months afterwards too.) He told me to "go away" while he took it. So I walked around the corner and peaked on him..... The little stink ran to the garbage can and dumped it out....!!!! WHAT??? I told him how important it is to take and gave him another dose, that he did take this time! and I thought, that was that.........
NOT SO MUCH.......
An hour later I was vacuuming the living room and moved the couch back so I could vacuum under it..... to find...... Riley's anti- nausea tablets, half sucked on.......
WHAT????
Oh man, who is this kid?!!!

How do you get to mad at that cute smile?!!

 On Thursday I finally decided it was time to tell him that he was going to loose his hair. I was so dang nervous. Chris had stopped and got each of the boys a hat that they had been wanting since last fall, we thought it would help the transition! So I sat him down and started to explain that the chemo was killing the bad AND the good cells and some of those are what makes his hair grow, so I said your hair is going to be shorter...(I couldn't bring myself to say bald) and he said "I know, I'm going to be bald", I said how do you know that, and he said "I just do". (I knew he was paying attention all those times he looked like he was ignoring all of us!)
Since then, he has brought it up to me 2 times and got tears in his eyes and said "mommy, I don't want to loose my hair." What do you say to that??? Because I don't want him to either. I said, don't worry, Hunter and Daddy will shave their hair too, so it will look just like yours!

Hunter has been such a good brother and super understanding of everything. He did have a breakdown on Thursday morning, so I kept him home from school for a couple of hours until he calmed down. Then he had a MAJOR breakdown that night. I can't imagine what that poor kid is thinking and going through, He won't talk about anything, he just cries and screams and hits the wall. You know what buddy, I cry and scream and want to hit the wall too!! You can have as many breakdowns as you want, if that's what get's you through the day!

skip'n school for a little brother time!!

We have been very mindful of him and have been making extra time for him, one on one. We even made a "CODE" word!! Safari! So whenever he needs a break or needs just mom or dad, he can say, let's go on Safari!! Or we say it to him sometimes too!!

What a good big brother!! He loves you so much Ri!

 

THANK YOU!!!! EVERYONE!!

THANK YOU!!!

How do you express how deeply thankful you are to EVERYONE for EVERYTHING they have done? For Anonymous Donations, Gifts, Dinner, Help, Love, Support, Prayers, Messages and Thoughts???
We Have so many Friends, Family and even Strangers that from the bottom of our hearts, we can't Thank enough.
It's not possible to send a Thank You to each of you individually, so please consider this YOURS......

THANK YOU!! WITH LOVE, THE SMITH'S

Day 6 of Radiation

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Day 6 of Radiation: Monday April 22, 2013

Last day of radiation......last time at LDS Hospital......last time, trying to "stay awake" during "pictures!!" It went super good!!! 

           We even got a GRADUATION diploma!!

                                            

 Thank you to Dr. Grant Hunter and all of his staff for helping my son!
 Riley truly is my Radiation Rock-Star!!
 We rang the "completion" BELL and we were out-a-there!!


Off to PCH for Chemo....

Had to get a picture of the parking pass!! Because we get so many!!

 Here are his counts this week:

HGB: 12.9 (14.1 wk 1) (less then 8 is bad)   

Hct:  37.8% (41.8% wk 1) (less then 24% is bad)   

WBC: 4.7... this is below normal (10.5 wk 1)  

PLTS:  288 (621 wk1) (less then 30 is bad)    

ANC:  3.0 or 3000 (7.6 or 7,600 wk 1) (less the 500 is bad)

I can't believe how much his counts have dropped on a couple of them already.... but I'm new at this and I'm not sure if that is a lot or not!  

                                 And here is my support system......My wonderful momma!!!

This past weekend was actually relaxing and fun! Riley only threw up in the morning each day and he was full of energy! We even played a little bit of football!!! We try to get out and get some fresh air everyday!                            
 ......... This is how we roll..........!!!!



Gatorade....snacks..... p.j's.....1 sock on 1 sock off......throw up bag.......

AND brother!!! Let's GO!!!

So grateful for the smiles and laughs!! I NOW stop and listen to the boys when they are playing and I just smile! I take TIME for the boys instead of saying "just a minute, I need to finish the dishes or the laundry or my phone call." I get down and play with them ALL the time. I use to take them for GRANTED..... now I know how fast things can change.... I LIVE for my family, instead of living with and around them. I have also learned to not live by "My schedule", I used to live in the future... Time was everything to me, what was happening tomorrow or next week or next month. I LIVE in this minute and that's all I care about.
                                                              I LOVE MY FAMILY!!

Day 5 of Radiation:

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Day 5 of Radiation: Friday April 19, 2013

Thank you for all of your thoughts and prayers because today went awesome!! We had the head anesthesiologist and he had 20 years experience with kids and it went so so good!! I took some good advise and stood up for Riley when I nicely asked that the anesthesiologist from yesterday, better not be there on Monday!

Since a lot of you have never and hopefully will never see a port or the inside of the radiation room…  

                                                  We took pictures today!

Here is the port: On the right is how it is under Riley’s skin in his chest. On the left is how they access it, with that needle, then they push medicine through it with that syringe. Every time they access it, we have Lidocaine cream that numbs his skin so it doesn’t hurt.

When we go into radiation, I get to hold him while they inject the meds in his port and he doesn’t even know it. He just falls asleep in my arms then we lay him down. I tease him everyday and say “Riley, are you going to fall asleep today again?” and he always says “no, I’m going to stay awake today!!”

                                        This is the machine that just “takes pictures”.

I stay in the room up until they begin treatment then after about 5 minutes, I go back in with the doctors to un-hook him and wake him up. 

Just finished!! It still isn't easy seeing my baby like this.

                                            Then were off to the 3^rd floor for recovery!

We just need a set of vitals and then we are good to go home!! 5 days down, 1 to go!! YAY!!

Day 4: Radiation

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Day 4 of Radiation: Thursday April 18, 2013

WHAT…. A…..Disaster……..

Riley remembers the first time we came to radiation for imaging and the laughing gas mask they made him have, to put him to sleep. Every day he asks if he has to do that again (with tears in his eyes, it was pretty traumatic). And everyday it should be a NO, because his port is accessed, well……

Riley’s port line was getting a little hard to push fluids through, but last night when I flushed it, it was still okay and I was getting blood when I drew back, which is a good sign! But by this morning, it had plugged up so much that we weren’t getting any blood return, (which happens often with ports). So when we got to radiation, we were supposed to have them do a procedure called TSA to break up the line. Well, the anesthesiologist wasn’t “comfortable” doing that, which made me mad because it was a change in nurses today anyway and they pretty much knew nothing about ports and were asking me questions….. WHAT?? I was so nervous and angry…. They were working on my son. I asked them to just de-access his port and re-access it but they said they didn’t know how…???? So instead they gave him Versed and 4 of us had to HOLD him down kicking and screaming while they put him to sleep with the mask, then they did an I.V. in his arm. He was so mad when he woke up. I had to climb on the gurney with him to hold him down while we were being taken to recovery. He was OUT OF CONTROL. That medicine makes him crazy and mean. And it doesn’t wear off for about an hour to 2 hours.

After we left L.D.S. hospital, we had to go to P.C.H. to have them look at his port… THANK GOODNESS for them!! Love them! They did exactly what L.D.S should have done, de-access his port and put a new line in. It would have saved the fighting, screaming, biting, kicking, and crying, had they just done this in the first place. Man, I was so frustrated, I almost lost my cool all morning. And I’m sure Riley is traumatize for life!

Just before we left, the meds wore off and I had my sweet boy back! Thank you Abbie Taylor for going with me and helping me today! Tomorrow better be a breeze, because I can’t do this again! And dang-it, if we have to go through all of this, can’t it at least be smooth?????

Ahh, miss these easy day's with this sweet boy!!

My girl Abbie!!

Day 3 of Radiation:

Day 3 of Radiation: Wednesday April 17, 2013

Today we started with throw ups just before we arrived at the hospital, first thing in the morning! This was a little concerning to the anesthesiologist because if his belly wasn’t better while being put out, he could aspirate and the acid could go into his lungs, which is very dangerous. Riley said he was feeling better so the decision was made to go ahead with it but he would be given a high dose of Zofran and also a steroid called dexamethason, this is to “help” so he won’t throw up afterwards up to 6-8 hours. HaHaHaHa! I asked, “what if he does throw up though?” ….he won’t…..”but, what if he does?” …… he won’t…..”but, what if he does?” HE WON’T, but it is okay to give more Zofran. Well…… He did, before we even got home. (Momma’s instincts, right there!!) He also threw up 2 more times before the afternoon was over. What the heck? Poor thing. We now have an assortment of throw up medications: Benedryl, Zofran, Dexamethason, and Advair. Which we rotate and fight EVERY single time to get him to take them.

The funny part was, all he wanted on the way home was chicken nugget’s!! And at 9:45 in the morning, NO ONE sales them!! Who knew??!!!  I’m just grateful for my support system today, Heather Francom! Without her, I would have throw up all over the car, twice!!

Such a wonderful friend!!

We also had home health come by last night to flush his port, I didn’t realize I would be doing it from here on out!! A little scary knowing I’m messing with his direct line to his heart. It’s okay, I’ve got this! I think I’ll be a nurse before this is through!!

7:45 rolled around and we all were off to bed for a GOOD night sleep!!