Rough Round of Chemo

Chase has been pretty tough through all his treatments.  He very rarely complains and is usually full of energy and loves to be around people.  Well, he had treatments last Friday and about Sunday night he started complaining of his tongue hurting.  He wouldn't eat dinner and  I din't think much of it because my mom and dad were here and I thought he just wanted to get down to play.  So I brushed it off and went on with the night.  We got up Monday morning and it was just me and him and Mason.  Everyone had left and he wanted breakfast NOW!!!  He didn't eat dinner so he is starving and he is on steroids so he is craving food like no other.  So I got him some cereal and he took one bite and said his tongue hurt again.  I said have a drink of milk and see if it feels better.  He tried that and the look in his eyes told me that it really did hurt to swallow.  I got a flashlight and looked in his mouth.  I couldn't see anything out of the  norm.  Tissues were all nice and pink and his throat looked fine too.  So I asked him if he wanted to try to eat something else.  He said he did and we played this little game all day.  I cooked something, he took one bite, and we threw it away.  I think he just kept thinking he was going to find something that wouldn't hurt. I finally got him to eat a gogurt, and he did drink a little bit of milk.  That was all that he had all day other than one bite of everything I made.  It was almost more frustrating that when he feels good on steroids because at least then the food I make all day doesn't go to waist and he feels good (well, not good, but better than he does now).  I was a little worried going to bed thinking what is wrong.  The only thing I could think was that he had mouth sores and they weren't showing up in his mouth.  He had told me a few times when eating that it hurt his tummy too.  Mouth sores can show up anywhere in the GI tract.  It is all the same kind of tissue and from what I have heard they are not fun.  But why would they be everywhere but his mouth.  I was hoping we would wake up and he would forget about it and they would be better.  That was wishful thinking!!!  Tuesday was worse.  He knew they hurt and wouldn't even try anything.  He wouldn't drink and trying to get him to swallow his meds even with a small sip of water was torture.  I felt so bad for him.  By mid morning knew that if I didn't start getting him to at least drink he was going to be dehydrated.  So to stay on top of it and not let that happen we had to do something.  We went in Tues afternoon to see Dr. T and see what he thought.  Chase had not been taking naps and not sleeping well at night either.  He would come in to our room so many times that we gave up and let him stay in our bed (this has not happened once in our whole marriage).  Anyway, so he fell asleep in my arms at Dr. T's office.  This is extremely unusual.  His lips had also been really chapped and he had started pulling at the loose skin.  So I started getting nervous that he was on his way to dehydration.  Dr T. checked him out and he slept through it all until he tried to look in his mouth.  He started crying (tears streaming....yay, not completely dehydrated).  Dr. said that his throat looked fine so we knew that he wasn't sick with strep or anything.  This is when I was convinced that he must have mouth sores that stretch from his throat to his tummy.  We got a new script for oxycodone just incase we needed it.  We can't give him tylenol because it has a fever reducer and we don't want to mask a fever.  If he were to get a fever we would have to go to ER ASAP.  So we got the oxy and headed home.  When I got home one of the cancer mom's I know had posted on Facebook that her little girl's most common side effect in maintenance (the phase that Chase is in in treatment) was mouth sores and they never show up in her mouth.  This had me convinced.  I know this is what it is!!!  So we gave him a little oxy (also a pain because he didn't want to swallow it).  About a half hour later he was eating and drinking like he had been starved (maybe because he had been).  The steroids were telling him he was hungry and his throat wouldn't let him eat.  He was miserable and didn't want anything to do with anyone.  Like I said my mom and dad were here and even that wasn't cheering him up.  He loves to play with them and he showed no interest.  They couldn't even look at him.  So we suffered (mostly Chase did) through the next few days and gave him oxy when it was really bad and he wanted to eat.  Finally the weekend hit (just in time for dad to be home and mom can have a break from the madness) and he felt 100% better.  I tried to tell Ashton how bad this week was and there was just no telling him.  I think sometimes he thought I was lying to make my day sound terrible and have him feel bad for me.  On wednesday my mom and dad stayed with us all day.  So when Ashton got home they could attest to the miserable circumstances all day.  Chase would perk right up when his dad got home and for some reason the nights were so much better than the days.  So we are glad to have that in the past.  I have never been scared or anxious for his monthly IV chemo because he always had handled it so well.   Now I get to add another worry to my list because I do not want that to happen again.  He spent the most part of his week on the couch in this same spot.  These clothes he has on are his pi's from not only the night but the night before that.  I couldn't get him to change them.  But I guess that is what I want to do when I feel yucky.  Give me my pi's and let me watch some TV!!!

This is the face I would get every time he had something in his mouth and needed to swallow.  He knew it was going to hurt, his hand would go to his mouth, and he would force the swallow.  His poor big steroid eyes just about killed me.

Once we got oxy in him he would perk right up (who wouldn't right???)  He wanted to watch Toy Story and he got all his Toy Story guys to watch it with him.  

First Clinic of the New Year

 Chase has been doing pretty good lately.  His counts haven't been the highest and we had our little fever with a virus over Christmas, but other than that he has been in good spirits.  I have been shopping for Ashton's little office remodel and we haven't been able to find end tables that we like so Chase and I left for Salt Lake early so we could hit a few home good stores and see what we could find.  Didn't have much luck but one of my good cancer mom friends had found some and got them for me.  So after roaming around and finding nothing we headed out to their house.  Chase was so excited to go play with Cami and Caden.  Chelsea had used blue painters tape and made a huge car track through their whole living room.  Chase was in heaven.  Chelsea's mom came over and we made cookies and played games.  After, the kids all cuddled up in Chelsea's bed with "Grandma" (Chelsea's mom).  Chase was loving it.  He loves the place that we usually stay with all the animals, but I think he was excited to have some toys and other kids to play with.  Needless to say we didn't get to bed too early and we had to be at primary children's at 7:30 am.  It was just Chase and I so I was a little worried about the drive home.  I didn't want to fall asleep driving.....but of coarse Chase stayed awake the whole time and kept me company.  So we were planing on staying at our usual place, but when the kids got playing and it got late we ended up just crashing with the Carvers.  Thanks guys for letting us stay last minute and showing us such a good time.  We had a blast!!!
So clinic went pretty good other than the fact that Chase's ANC is back down to 600.  He dropped to 500 with his fever over Christmas, but then he came back up to 900 so I thought he would be at least that or higher, but nope!!!  He dropped back down :(  They didn't change his chemo dose which I didn't think about too much at first and then the more I thought about it I didn't like it.  His little body needs a little bit of help when it is trying to get back up to normal.  Then he can handle his full dose of chemo.  So we will see what his next CBC is, and if it is low still I will be hoping for a drop in his chemo dose.  (update: nurse jenette came and did CBC two weeks later and he was only 400 so they took him completely off all his chemo.  I was so sad because if I would have said something while we were up at PCMC about reducing his dose he wouldn't be off all his chemo)
On our drive up there Chase had asked me, "mom, do I have to have a sleep this time?"  He has got it figured out that when he goes on the long drive to Salt Lake that means he has to be sedated.  Poor kid!!!  He said after I answered yes that he didn't want to go to sleep.  After playing with cars in the clinic we headed down to RTU.  Chase knew where we were going.  I am telling you, we think we can fool these little kids when really they know much more than we think they do.  We were waiting for the elevator and he said to me, "mom, I just don't like the pillow!"  Really Chase???  That is the reason you don't like to have a sleep?  So I told Wendy (one of our fav RTU nurses, but we have a few that we like down there) that we didn't want the little blue doughnut pillow.  She took care of it quick.  Her and Chase started playing with it like it was a frisbe.  He was almost in mid throw when the anesthesiologist said, "mom you got him?"  and a second later he was out.  So we got rid of the pillow and hopefully he would wake up happy.  Well, he didn't.  In fact he slept FOREVER!!!  I just kept wondering when they would come out and get me.  Finally the nurse came out and got me even though he wasn't awake yet.  We tried telling him we had food and shaking him.  It was no use.  He was having a super good nap.  When he did finally wake up he was extremely grumpy.  I usually just pick him up and carry him to the car or back upstairs if we still need to get chemo.  This time I had too many of his toys and he has gotten really big.  So they put him on my lap and pushed us in a wheelchair back upstairs.  After getting him some yogurt, milk, and markers to color he started perking back up.  He was ready to go home though.  But as we walked out of the clinic he was looking for spider man so we walked down to the third floor to get another picture with him.  I think his spider man pictures are going to be his growth documentation because I think we get one every time we go up.  He was again a little trooper and I was so proud of him.  He wasn't very friendly to all the docs and nurses this time.  I am not sure if it is because he is getting used to just seeing Dr. T in St. George (who he loves) and all the nurses at DRMC (which he also loves) or if he just didn't want to be there that day.  Either way, he was just happy to be headed back home.  Because of his long nap in RTU he didn't sleep a wink in the car.  It makes for a long drive for him, but he was still awesome.  I am so glad that he loves the car.  If we lived back in the day where TVs didn't exist in the car, or hand held games (iphone) we would be in trouble.  Another round down, and who knows how many left to go.  I don't want to count.  All that matters is we have another one behind us.

Chase snuggled up with Cami and Caden in Carvers bed.

We used the dry erase markers to make a car track on the paper once and now he looks forward to it every time we go.  He even packs certain cars to take with us in case the clinic doesn't have the ones he wants.

Are We There Yet??? And the Brave Little Soul

Chase and I were watching a video of a friend who finished treatment a while ago.  He asked why they were singing happy birthday to her.  (The song the nurses sing is to the tune of Happy Birthday).  I told him is was because she was all done with cancer.  In his sweet little 3 yr old voice he says to me, "mom, when am I going to be done with cancer?"  I wish I could have given him a good answer like, "one more month, or after your next birthday."  But instead I had to say, "a long long time Chase."  We still have so long to go that there is no way to even describe to a three yr old how long it is going to be.

I feel like I am on a forever long road trip and he is sitting in the back seat saying are we there yet?  He has no idea if we are even close to our destination, so I could tell him anything.  Instead, I always say to my kids when we are on a road trip, "we are getting closer."

My husband laughs at me every time and says to me, "Of coarse we are getting closer.  That gave them no idea at all of how close we are."  But this is what I say because it keeps them quiet, and it is true.  We may have hundreds of miles left to go, but each one we travel we are getting closer to our destination.

I have to keep this attitude when it comes to Chase's treatment.  One mile/day at a time.  With every second that passes we are "getting closer."  I am just ready to be done so badly.  I also don't want to complain because he has been so blessed and done so well.  I don't know if I am feeling this way because it is winter and everyone is sick or because we have to head to PCMC tomorrow and I should be packing now and I don't want to.  I just get scared that he is going to get sick.  At this point in his treatment it is more likely that he would be in critical condition because of a sickness that it is for him to be because of the actual Leukemia.  I want to know that everything is just going to be ok.  I want to know that the rest of our trip is going to be smooth.  We can travel in a nice car with very few "potty breaks", and make it to our destination (Oct 2013) without the car breaking down or major accidents.

My life has become cancer so I can not imagine not having it in my life.  It is weird to say that there will be a sort of "void" in my life, but right now I want the void.  I want to be normal again.  I want to take my kids to school and not worry about the boy sitting next to Abby that is sicking his hands down his pants and then touching her stuff.  (yep, I wanted to smack him, but I think I would feel that same way no matter if we had cancer in our lives or not.  That is just gross!!!)  But I really do want to have this anxiety go away.  I like to hope that when the treatments are over it will go away, but I am sure that three and a half years of living this way will not just disappear.  And then I will have the worry that the cancer is back, or one of my other kids is showing signs.  I just hate all that cancer has done to us all.  It takes away all your innocence.  There was a day that I thought we were a healthy family and nothing would ever happen to us.  Cancer has opened my eyes to a world where anything is possible.  Heavenly Father is the only one who knows our plan.  I know that before we came here we knew what we were up against.  I knew that we had full knowledge of how hard it would be.  But we are all here.  We all STILL chose to come to earth because we knew that in the end the rewards would be so much greater than the suffering we would go through while here on this earth.

Chase is a choice little spirit, and I know that when this is all said and done it will all be for a reason. 

THE BRAVE LITTLE SOUL  by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

I can not even express to you how true this is.  First, I know that Chase is a brave little boy.  But even more than that I know that he has unlocked the love and sweetness in so many hearts.  So many people have reached out to us.  We have felt the love of so many.  But I also know that he has changed me.  I know what it is like to have your life changed over night.  I love, more than anything, paying it forward and helping those that are in need.  I just hope that I can stay in tune with the spirit enough to find those that need help.  Very few will ask for help.  Most will try to do it alone.  Unless we are being a good neighbor, friend, sister, brother, parent, or child we will never know who needs our help.  I hope this change that Chase has brought in us will stay with us forever.  I hope that we can be a better family, and love each other, and all those around us a little bit more.  That is the part of cancer I don't want to ever leave us, but I would love for Cancer to be gone NOW!!!!

Abby Skis

Abby asked for snow clothes from Santa because she wanted to go skiing.  I have thought about taking her in the past, but she is the type that if she fails she gets very frustrated so I wanted to wait until she asked to go so I knew that she really wanted to be there, and not because I wanted her to go.  So Ashton and I took her and went up to Brian Head for the day.  We put her in the Ski School and Ashton and I Skied all day.  I kept wanting to go back to the bunny hill because I didn't want to miss her "firsts" like getting on the lift and her first time down the hill.  We did venture back that way a few times, but I resisted so that Ashton and I could have some fun skiing too.  I asked her if she liked it at the end of the day and and she told me, "I didn't like it mom, I LOVED it!"  When we dropped her skis off the guy asked if we were coming back tomorrow and Abby piped right up and started begging to come back tomorrow.  We will have to take her up night skiing and let her have at it on the bunny hill because she obviously had a blast.  Oh, and Ashton did pretty good too.  He didn't fall down much.  The only times I saw him fall was when he was standing still.  Hahaha....love you Ashton!

Before letting them ride the lift up they would have them ski down this little hill and then they had to take their skis off and walk back up the hill.

Abby carried her skis about half way up then she would drop them and kick them the rest of the way up.

Now for a little treat of her in action.  Watch her at the end.  She hasn't learned to turn yet and the lady at the bottom is not paying attention.  Come on lady, you are on the bunny hill.  Don't you know you have to dodge people on the bunny hill.  Maybe the lady doesn't know how to turn yet either :)

He's My Son

*****Make sure you pause the music on my left side bar before you hit play on this one*****

Another Cancer mom shared this Song and while listening to it a flood of memories came back to me. The first year of Chase's treatment was so scary. I am still scared every day, but I seem to gain more and more confidence every day that everything is going to end up ok in the end. We still have a long road until we are off treatment. I wish that it ended there, but this is something that for the rest of Chase's life will probably effect him. I hear of good and bad endings all the time. There is a little boy that has the exact same diagnoses as Chase. But his family spent this Christmas with him knowing it would be his last. He has relapsed and there are no other options. I just hate the unknown!!! Side effects from chemo are terrible and do not end when treatment ends. I just hope that Chase's, life is normal. I know I say that a lot, but I am a worrier. I worry every day what the future holds for him. I love him to death and just wish that he didn't have to go through all that he is. He is so tough, and has no idea just how strong he is. If only he knew that. One day he will understand that his childhood was different and he was being shaped and molded in our Heavenly Fathers hands. He is preparing him for something big. He is going to be a little fighter. I know he has a plan and I just have to sit back and trust in him.

New Year Rockin Party at the Prince's

So once again Chase's counts were too low to go anywhere.  Our friends Shawn and Carrol were having a party that we were going to go to, but ended up staying home to keep Chase healthy (even though his is already sick, but didn't want it to get worse).  So we asked the kids what they wanted to do and pinata was the first thing they said.  We did one last year so they must have remembered.  Abby and I went shopping and when we were done she said, "mom, I don't think I want to come shopping with you next time.  Now nothing in the pinata is a surprise for me."  I told her that I loved having her with me to shop though.  So she said that she would come with me again in 2013 but not next year.  Crazy girl!
Chase could hardly stand to wait until night to do the pinata so we did it at 4:30 to start the night off nice and early.  We let them pick dinner and of coarse it was McDonalds so Ashton and I ordered Olive Garden and got them some McD's.  After dinner back at home we headed outside to use our new firepit and roast some marshemellows.  The kids got a kick out of that and then we went inside for a shower and got in our pj's.  We played games on the Wii that dad got for Christmas.  The kids gave him Family Game Night so it had lots of different hasbro games.  We played that until about 10:30 when Ashton took the kids to see Shawn and Carrol's fireworks.  I wanted to go, but Mason was sleeping and I didn't dare leave him.  So I set up camp in the living room for the movie (Mr. Popper's Penguins) and our sleepover in the living room.  The kids didn't know about this part so when they got home they were excited.  The next day Chase kept saying to me, "mom, you surprised us last night and that was fun."  He loved the sleepover even though his head hit the pillow at 11:50 and I think he was asleep by 11:53.  He almost made it to the new year.  Abby on the other hand had to be told to stop watching the movie and go to sleep when it was 12:30 and I could still hear her over there laughing.
We had a great new years party this year.  Anything beats last year when we were sitting on the couch with Chase rubbing his legs while he screamed in pain.  He was sweating and I had no idea what was wrong with him.  After giving him some oxycodone and some heat packs for his legs life was better.  I am just so glad that this year we celebrated New Years on the same day as everyone else in good health.
We have had a pretty good year this year.  We asked the kids their favorite part of this year and I think we ended up with the whole family agreeing that it was our trip to Disney World.  
This is a year that we will never forget.  Abby has become quite the little pianist and dancer.  She has loved first grade and is excited every day to go to school.  She has made lots of friends and talks about the boys in her class a lot (is that a bad sign?)  She is reading chapter books like a pro and loves Judy Moody, Junnie B Jones, and her new favorite is Romona and the Beverly Cleary books. 
Chase made it to maintenance in his treatment.  He has done awesome the rest of the year with his chemo treatments and meds at home.  He has been going Preschool and loving it.  He cries when I drop him off, but he says that is only because he is going to miss me.  He is very good at his alphabet and what each letter says.  He likes to play the game that we find something in the room and say what letter it starts with.  He is so cute because he says it backwards.  He will say, "mom, A starts with Apple."  His computer and iphone skills are out of this world.  It think kids now days are just born with technology knowledge.  He loved playing soccer and is so proud of his trophy that sits on his headboard.
Mason is just a little ball of energy.  He is talking a little but not much.  But he still finds a way to communicate what he is thinking.  Last night he ran in the bathroom when I told him it was time for a bath.  But when I turned on the bath water he shook his head no and he walked over to the shower and hit the door.  REALLY?  He is now old enough to decide where he wants to take a bath.  He loves the shower and I think it is because he loves filling up little toys and buckets with water and dumping them out.  I think he would love the bath if I would let the water keep running.  He loves his older brother and sister.  If they will play with him he thinks they are the coolest thing ever.  He follows them around and laughs at anything they do to entertain him.  He is a picky eater.  Pickier than I have ever seen.  If I put something on his tray he doesn't want he wont even try it.  He turns his head and screams until I take it off his tray.  He is an awesome sleeper.  He is happy when he is awake.  But the food thing is going to kill me.  There is nothing I hate more than fixing dinner and having no one eat it.  So he gets all the crappy kid food like mac and cheese and nuggets.  The only thing that is usually a sure bet is fruit.  He loves fruit.
 Chase just wanted to watch the video that is at the bottom of my blog posts.  So I watched it with him.  I can not believe how much both he and Abby have grown since he was diagnosed.  This year has been full of lots of changes.
We are excited for the new year. I don't want my kids to grow.  I love them where they are and I hate it when I turn around and they are big.  Abby is a little lady and Chase is not a baby anymore.  I would love time to stand still other than the fact that I want cancer out of our lives and treatment to be over.  But that would mean wishing away the next two year and I don't want to do that because I would miss so much fun stuff with my kids.  So we will grin and bare the bad parts and while they happen we will soak up all the good.  Wishing for another Happy Year!!!