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!! 

Day 2: Radiation

Day 2 of Radiation: Tuesday April 16, 2013

Today was a really good easy day (if that is possible)!! Since Riley’s port was already accessed, we took him into the “camera” room and they gave him the drugs through the port and he was off to sleep and it was over in about 5 minutes! This momma didn’t even have a breakdown today!! He didn’t come out of anesthesia as fast and was really tired. When he did finally wake up he thought it was funny to play with the bed: Up and Down, Up and Down! Hey, at least he was smiling and happy!! 

As for me, I had my wonderful support system with me!! Katie Auger! 

Going to miss her when she leaves....

So I was doing super good, even with dad at work! To all my other friends and family: Don't worry, you will get to come with me in the next 6 months to get your turn of "fun" too!!! hehe!! 

We got home about 10:00a.m. which I was thrilled about.  I got us all cuddled up ready for a snooze and I was just about to sleep AND….. Let the throw up begin. I swear!! Little Riley is a trooper though, he just carries the throw up bucket wherever he goes….. It’s a part of our life now.  Our new life.

When his port is accessed, Home Health has to come by every night to push a little bit of saline and heparin into his line, this makes sure his blood doesn’t dry up in the line and makes it easier to access the next morning. Thank goodness for technology and doctor’s!! They have saved a sweet little life that we need in our family!!

Radiation / Chemo Day 1

Day 1 of Radiation and Chemo: Monday April 15, 2013

Today is the day…. Riley has no idea what in the world he is in for and how do you explain it to a 5 year old?..... You don’t! We tell him things he NEEDS to know and fake the rest. Like for example "Radiation", is just a big camera that takes pictures of his belly. Today it took a total of about 2 hours, from sedation to the time we left the hospital. We accessed his port today, which they will leave accessed until next Monday. This makes it easier and less painful to draw labs and give meds, rather then using an i.v. in his arm every time. He told me he was scared and didn’t want to take any "pictures." I told him me too buddy and then I told him I would be there the whole time. He came out of anesthesia really fast and man, did he wanted to get out of there!!

Walking down the hall to radiation with Daddy

Our Anesthesiologist trying to negotiate with Mr. Stubborn

After the negotiating went down....waiting for the Versed to kick in so he can relax and not remember how scared he was to “get my picture taken.”

After a quick 20 minutes went by they came and got us and said they were done.  He was already awake and he just wanted to be in my arms. 

Waking up from anesthesia, I just want mom to hold me.

Then we were on to Primary’s Children Hospital for Chemo.

Our view every Monday for a while

We got there at 10:00 and fought to get Riley weighed and his blood pressure!!! That was so fun!! {not} Then we went into a room to draw labs, and talk (and talk and talk) about everything. We talked to 2 Oncologists (plus a med student), 1 social worker, 1 child life specialist, they answered any questions we had and gave us a lot of information that I don’t think I will ever process!!!  

While they talk and talk...Riley plays and plays!

Here is a breakdown of his lab results: Were starting out really good!!!

HGB: 14.1 (less then 8 is bad)   

Hct: 41.8% (less then 24% is bad)   

WBC: 10.5 
PLTS: 621 (less then 30 is bad)    

ANC: 7.6 or 7,600 (less the 500 is bad)

Finally we were off to get the chemo.

Looonnnnggg hallway to the "CHAIRS!!!"

It is so crazy that these drugs that are supposed to help my son, are given by a nurse that is all dressed up in protective clothing because it is so dangerous. And for some reason I thought he would be hooked up to machines for hours while receiving treatment, he’s not, the nurse sits there and administers it through his port until it’s all given. He can just sit in a stroller, play the I-pad and drink a chocolate milk during the treatment!! How easy was that?? Haha!! At least for this treatment!

Waiting in the chairs for the chemo...

Sipping his chocolate milk.  He is really good at tuning everyone out!

The first drug Dactinomycin

Second drug, Vincristine

They got our post op follow up appointment changed to today, so we don’t need to come back here tomorrow! Which was so nice!! Dr. Meyer’s said everything looks really good from surgery and we are good to go and see her next week!!

WHEWWW! After a long 5 hours at this hospital, we grabbed our prescriptions’ and we headed home!!

But only to find this……. (once we arrived!!)

How dang cute is that?? We have so much support and love!! Thank you all so so much!! Riley had a grin from ear to ear!!

The bad news of all of this is, Riley started throwing up before we even left P.C.H. and it didn’t stop until that evening.  Dang it, I thought we would have a couple of days before this hit…. Guess not. We have the throw up bags ready at all times!!

However, this sign says it best!!  Riley IS Rocking cancer!!!!

SOOO many mixed EMOTIONS…….

When Saturday rolled around, everything felt so normal, we slept in a bit, ate breakfast together, turned on cartoons and just hung around. More people came by to say Hi and I just felt so good, and so did Riley!! I had a plan to go out with some of my wonderful friends for an early dinner and I had been hesitant all day. I knew I wanted to get out and I was excited, heck, the only break I’ve had from Riley in almost 2 weeks was to run to the grocery store and that took 30 minutes! But I was so nervous to leave him. I did end up going and we went to, only the best, Happy Sumo!! We had such a good time, good food, good laughs, but I had anxiety the whole time. In fact as we were heading out the door, I just got hit with so many guilty emotions that I just started to tear up, that of course went on to crying. I just felt so bad that I was laughing and having a good time while my boy was home fighting this disease. I felt happy that everyone else had normal, healthy, good lives but sad and mad that we didn’t. So I wanted to talk with everyone but didn’t want to at the same time. I wanted to escape my world but then that’s all I could think about while I was gone. I wanted to talk about what was going on with me/us, then again, I didn’t. OH MY HECK, what is wrong with me? ……I am all over the map…… I was very tempted to just go home but I stuck it out! We got desert and heading to momma Lil’s for more laughs. It was good for me! And I have the most wonderful amazing friends that understood my craziness and just took care of me!!

A fun night out with good friends at Happy Sumo!

Blessed to have a special bond with all these amazing girls! While eating "never on Sunday's" from The Pizza Factory!

Sunday, the Day Before Treatments…… Oh man am I all nerves….. Here we go again! I think I need to get some anxiety pills before too long!!

The schedule for this week is:

Monday: LDS hospital 7:30a.m. Radiation, Primary Children’s Hospital 10:00 a.m. Chemo

Tuesday: LDS Hospital 7:30 a.m. Radiation, PCH 10:00a.m. Post op visit with surgeon.

Wed-Friday: LDS Hospital Radiation

The kids are in bed and I lay here typing, wondering so many different things. How is this week going to go? How will Riley do? How sick will he get? How long before he get’s sick? How is Hunter going to do tomorrow/all week having someone be here when he get’s up, to get him off to school?  On and On and On….How am I going to ever fall asleep with so much on my mind? All I can say is….. I’m just glad I have one WONDERFUL husband that will be there with me to hold me together! I love Chris so much and I feel like we have been such a good team through all of this. So grateful to have you babe!   

It's OK to be happy... It's OK to smile!

Turned Out Real Good!!

From my last post you can see that I was not in a good place at all. I wondered how I was going to pull out of this sadness so I could function and be a good mom……. 

Well, I got a knock at my door!!! And guess who surprised me?? One of my bestest friends flew in from Australia!! I couldn’t believe it. Katie was here and all I could do was jump up and down and cry with her! It was just what I needed to lift my spirits! Thank you Kate! I sure love you!!

That night turned out to be a real good night too, we all slept, and got some much needed sleep! And I have to say, Friday just kept getting better!! We had so many wonderful friends come to visit us and bring wonderful gifts for both boys to help them get through the upcoming weeks. My heart was filled with love for the generosity and thoughtfulness of everyone. I can’t believe how great and supportive and willing to help everyone has been. Riley was so excited to see friends, even though he was shy about it, he told me later that he loved seeing everyone! And of course I loved seeing everyone too!!

I just can’t stop expressing my gratitude to everyone who has thought about us, prayed for us, texted, emailed, called, brought by food, supplies, gifts, money and/or just your love. It means more then you will ever know, so THANK YOU!!

Oh and I almost forgot…. THE BEST NEWS OF ALL!!!!!! We got the lymph node results in….. out of 38 that were sent in…… 0 had cancer!!!!! WAHOOOOOOO!!!! Can’t stop smiling!!!  

And for those of you wondering, because I just got asked this question, Riley has a 90% survival rate!! 

But were just going to say 100%!!

Thursday, imaging day:

We got up and left at 5:45a.m. First off, that is WAY too early for anyone to be functioning and on the road and second, Riley is way to grumpy. It made for a sad sad day! And I don’t mean just for Riley. This momma …was… a …MESS. Breakdown # 2099! I don’t know what is wrong with me. I know exactly what is going to happen but holding my baby while they put him out, then seeing him lay there helplessly on that big table just hit a spot and I lost it. Today I have those feelings of sadness at myself, that I didn’t and can’t protect him from this monster inside of him. His tiny body is so sick and all I can do is hold him and hopefully that is enough. Today is the day that I actually questioned, why this little boy, why any little kids? They are so innocent and wonderful and have no idea and can’t understand why they are sick, and all I can say to Riley is, just a minute and they’ll be done, or it isn’t going to hurt that bad, when I really have no idea how bad it will hurt. Today, I had feelings of, I can’t do this anymore…. And we haven’t even begun. My heart can’t handle this pain and sadness he is going through. Riley just cries every time we get in the car to go to the Dr’s. I don’t blame him. But I wonder how we're going to get through next week, having to go every single morning. 

Riley’s big brother Hunter is also having a really hard time with all of this. He is acting out so much and last night he had a breakdown himself. Not crying, but yelling and kicking and screaming. I went into his room and told him that it was okay, get it out, be mad, what ever you need to do, is okay. It went on for a while, but I think it helped, I hope it did anyway! He has been so worried about Riley and has been taken to and from wonderful aunts to wonderful grandma’s for such a long time, that come Monday, he would not go to school… Or Tuesday… Or Wednesday. He won’t go to soccer and he won’t go outside and play either. I think he misses his best friend too! We have had to do some special one on one time with Hunter, which is good for all of us, so I hope it helps and this isn’t too traumatizing for him!
On a good note, here are a couple of my favorite pictures, and times that I want to always remember! The many days and nights in that dang rocking chair next to Riley’s bed, just holding his hand and kissing it, telling him, “mommy is right here, you don’t need to be scared.” 

These ups and downs are going to be the death of me!!

Love my sweet, brave boy!

I feel so helpless...

and just want to take all the pain away!

What is today??? All the days are meshing together and I am one tired momma!

I’m a day behind on my posts…. Don’t judge me! I’m a little busy!! Hehe! Here’s a catch up! It's a little long, pull up a chair!

Well, the sleep over didn’t work out the way I had planned, (in a nice way) Hunter got kicked out because he wasn’t 18. That was okay, he stayed late and we had a fun family movie, Popsicle night!!

Seeing his brother really lifts his spirits.

Fun night with my brother.

On Tuesday morning we were told Riley could finally eat whatever he wanted all day!! He wanted CORN DOGS!! And........we could go home later that afternoon!!! We were thrilled!! We had a meeting with the radiation doctor, Dr. Hunter, that morning and he actually put our mind at ease with all of it. He said that Riley would be getting a very low dose of Radiation on his abdomen. The # he used, which I will find more about later, is a 10, he said that people with breast cancer and brain cancer use around a 60. So it is a very low amount, which is so good. It should not burn his skin, just tan it a little and it will only be for 6 days. The bad thing about radiation is it can cause a secondary cancer later on, his would come back in his abdomen tissue or spine, but we’ll deal with that another time, or hopefully never.

So happy to get the news that we could go home!

The plan is to go home until Thursday, then we need to be back up to LDS hospital so he can get imaging for his radiation that will start on Monday the 15^th at 7:00 a.m. When they “map” him out, they will put him out while they get very detailed scans of his abdomen which will then be marked and tattooed on his body so they can line him up at exactly the right place every single time. The radiation will go from Monday to Friday then again on Monday. We also had another meeting with the Oncologist and have a game plan for the Chemo as well. We will also start that on Monday the 15^th at 10:00a.m. This will be every Monday from here on out with a couple of resting weeks in between. Because both of these procedures cause a lot of the same symptoms, we are just planning on Riley being sick and wiped out after the first week. But maybe we’ll be surprised! I’m actually feeling a lot better about things, I went through a moment of anger, then I decided there’s nothing I can do about it, so why not put my energy somewhere else. Don’t get me wrong I am NOT happy but I’m trying to be patient because I know one day the reason behind all of this will be clear. So until then, mini breakdowns and times of numbness will be my survival! Okay, maybe a little Prozac too!!!

Playing Lego's. So glad to have a little normalcy even if it's only for a day!

It was so good to be home for even just a day! But we had several problems with his drain getting plugged up, this causes the fluid to pool in his belly and cause a lot of pain and swelling, possible infection. So what did I do….. Called my on call nurses….. Calie and Pam!! Oh man, you should have seen the Mexican Surgical sight in my living room!! It was the best! They dislodged the tissue plugging the tube and we were good to go!! Until it happened again, and again. We ended up at the pediatrician’s office Dr. Miller for help. It seems like all is good for now, but we are supposed to go to PCH tomorrow to get it checked out by the surgery team. 

Our new sleeping arrangement for now.

Still so tired, but glad to be home!

So between sleeping with Riley in a rocking chair, worrying about his drain, waking him up for pain meds and (2) throw ups, we got a tiny nap last night!! I feel like this will be what a lot of the next 7 months will kind of be like…… oh man, I will be a zombie for sure!!

 HUGE THANK YOU!!!                                                                                                                                                         To so many people…. Coming home to an absolute clean beautiful house fully stocked with food and supplies, we will never be able to thank or repay everyone. It means so much to us. We seriously do have a huge army here is Salem backing us up!! We love you all and know how blessed we are. The biggest THANK YOU of all goes to my sweet sweet mom. Without her I would not survive. She has been at my house since day 1. She has taken care of Hunter, Frankie (our horny toad!) cleaned, washed, scheduled, driven to SLC and listened to me cry and have many many breakdowns without any hesitation at all. She is absolutely amazing! I love you so much mom!

To my Army Thank You!

Since Riley will be his healthiest on Friday and Saturday, we would love to have friends and visitors come to say hi for just a minute! I know so many of you care, and I would love to give you a great big hug!!