Tuesday, January 31, 2012

I cannot believe how fast a month goes by lately.  Today we headed back up to clinic for more chemo and an LP.  I was really looking forward to it actually because I was so curious what his counts were.  I have basically been letting him be just a normal kid going places and playing with friends so I was hoping his counts weren't bottomed out or something.  To my surprise they came back too high.  His ANC was 4.0 way higher than it should be, so they raised his oral chemo dosage back up to 100%.  All of his other numbers were just where they should be though so that's great.  They even had his Vincristine ready to push before we went down to RTU so that was great too.  I love not having to drag a sleepy grumpy child back up to clinic after an LP just for a little push of Vinc.

While we were waiting for our turn in RTU, our favorite child life specialist Lindsay came to play with Skyler and keep him entertained while we waited to go back.  Lindsay is still the only person up at the hospital that Skyler will talk to and interact with.  All the nurses and doctors try so hard to get Skyler to talk to or even just smile and them but he wont budge so its wonderful to see him talking and having fun with someone else besides me while we are there.  We got lucky with a great anesthesiologist too who was really great with Skyler.  When he came back to get us he told Lindsay she could come back too and Skyler actually let go of my hand and ran back to the room.  Yup I said ran!  He normally has me carry him back there and buries his head on my shoulder because he gets really nervous and scared right before.  Today was so different though, I was amazed watching him.  It was like I was looking at a different kid.  He also just got up on the table and started playing with Lindsay and the nurse and and didn't even really pay attention to me.  I have always held him in my arms while he falls asleep but today he just sat there and played up until the moment he fell asleep.  It was great and I took the opportunity to record him.  Here is just a little part of that video when he falls asleep.  I just want everyone to see how fast it is and how it is such a different atmosphere than the O.R.

Monday, January 23, 2012

Skyler had another first the other day.  He walked down the stairs at my parent's house all by himself!  This is such a huge accomplishment for him.  Because of all the chemo his little body has received and from laying in bed for five months straight his bones are so weak.  He has lost so much bone strength especially in his ankles which cause him constant pain.  He tries so hard to push through it though so he can be like every other kid but I can tell he is in so much pain when he walks. 

When he first started to be able to go down the stairs it was just sliding on his bum or crawling.  Lately he has been able to walk up and down the stairs with help from me or holding onto the wall or railing, but the other day was the very first time he went down the stairs without any help.  He usually cant even step off a curb all by himself so this was awesome!  Here is the video of it (sorry about my annoying scream at the end)

Friday, January 20, 2012

I was going through some stuff today and found this poem I wrote back when we were in the hospital, so I thought I'd share. 

Holding you in my arms so tired and weak,
I never thought this would be your world
So weary and bleak.

You are supposed to be running laughing and having fun,
Not laying in a hospital bed away from everyone.

Your skin should be vibrant and glowing with tousled sun kissed hair,
Not pale bruised and sunken or a head without hair.

The noise I hear from your room should be giggles and squeals,
Instead I hear machines beeping and humming
And squeaks from IV pole wheels.

An owie for you should be a little scraped knee,
Not big wounds, scars or stitches and pokes so frequently.

This monster called cancer has taken a lot from you,
Taken part of your innocence and childhood
A fact I wish wasn't true.

But Skyler there are things that cancer cant touch.
It cant touch your smiles, your tender heart, or that positive attitude I love so much.

It cant touch the way you make me laugh,
Or the way you make me smile.
It cant touch your courage, your strength and inner light that shines bright for miles.

Yes, cancer can be scary and hard or leave you feeling blue,
But you have turned it around and made cancer FEAR YOU!

I love you my son,
You make my world oh so bright.
We are in this together,
We will win this fight.


Sunday, January 15, 2012

Skyler has been having so much fun lately playing with his cousins.  He runs around laughing and having so much fun.  It's the best physical therapy out there for him.  Since it's the dreaded cold and flu season though most of my family has been sick which means Skyler cant be around them.  We have had to be very creative lately in what we do to keep us entertained.  One of which has been bathtub fishing.  So simple, yet so much fun.  Throw a bunch of magnets into the tub and attach a magnet to the end of a fishing pole or even a stick and catch some "fishies". This kept Skyler entertained for hours.

                                    Trying to get one to bite.

Reeling it in...

Look at that catch!

Another fun thing Skyler has been able to do is finally play in the snow!  This was the first time in over two years that he has done that.  Last year he was in the hospital of course and the year before that he kept getting croup over and over so I didnt ever let him get in the snow.  I wasnt planning on letting him play in the snow this year either but as we were driving around the neighborhood after the first snowfall looking at all the snowmen everyone made I just couldnt keep that away from him.  I wanted to give him the joy of making his own snowman.  I bundled him up and out we went.  We tried so hard to make those awesome snowmans you see in movies but we found out that snowman making is not one of our talents.  It was quite hilarious watching us try and roll a ball of powder.  We did finally end up making a cute little one though and also had a fun snowball fight.

He was so happy to be able to throw something at me and not get in trouble.

 If you squint your eyes just right you can see our tiny little snowman. He even had goldfish eyes and pretzel arms.  That's about as creative as we get snowman wise.

Thursday, January 12, 2012

For Skyler's birthday this year I want to hold a blood drive in honor of him.  What better way to celebrate his life than helping save another life?  Skyler would not be here to celebrate this birthday if it wasnt for the generous people that took the time to give blood.  The blood drive will be held May 5th in North Salt Lake from 10:00 am to 3:00 pm.  I know its really early to tell everyone about it but I just want to put it out there so you can save the date.  I need at least 35 people to sign up to donate blood, but I want to make this a big deal, so I would love it if we got way more than 35 people to sign up.  It doesnt take up much time at all.  The needle is only in your arm for 6 to 10 minutes!

If you would like to sign up or have any questions please email me at crystaln_isaacson@yahoo.com

Also you can go to this site if you have anymore questions  www.utahblood.org

                              Thank you!!

Sunday, January 8, 2012

One thing that has been therapeutic for me lately is to make videos of Skyler's cancer journey.  He is doing so well now that we have been able to resume some sort of a normal life.  I feel like since things are pretty good now that I should be back to my normal self again and everything should be perfect, but the truth is emotionally I'm just not there yet.  Even though its been over a year I feel like I am still trying to recover from what we went through.  I think it will just take time to make those images and emotions I felt not so close to the surface anymore.  At first I tried just blocking everything out of my mind and not looking at any pictures of what Skyler looked like when he was really sick, but I have learned with Ben's death that its better in the long run to deal with this kind of stuff head on.  As I look through pictures now to use it helps me to remember that he did go through (excuse my language) hell and back, and just because he is doing well now it still doesn't erase what happened a year ago. 

I found this song on another cancer cutie's blog and it brought me to tears.  It's exactly how I felt those many nights that I prayed and plead for my Father in Heaven to spare my son's life.


Friday, January 6, 2012

Today is a good day, one I will always remember.  One year ago today Skyler was finally able to come home after four and a half months in the hospital.  Today is also my amazing mother's birthday which makes it so much more special.  From the day Skyler was born my mom has been there for us through thick and thin.  These past few years have been anything but easy and I know I wouldn't be doing as well as I am today if it wasn't for her.  She is my rock and someone I know will always be there for me.  She is so much more than just a grandma to Skyler, she is a very vital part of his life.  I am so blessed to be able to call her my mom, and for Skyler to call her grandma. 

Grandma's hold our tiny hands for just a little while, but our hearts forever.  
-Author Unknown

        Happy Birthday Mom!!
       We love you!

Tuesday, January 3, 2012

We headed up to Primary's today for our fun monthly clinic appointment and LP.  I cant believe how fast these months go.  Everything went really well today and we were in and out pretty quickly. They had his Vincristine ready for him when we got there so we didn't have to come back up to clinic when he woke up from his back poke.  We found out his ANC is way too high so they upped his dose of his oral methotrexate at home.  With this last infection he was off all oral chemo for a couple weeks but he was able to go back on them a couple weeks ago.  Ever since he has been back on them he has been really nauseous.  You forget what this poison does to their bodies when they take it everyday, but it was a huge difference in how he felt when he didn't have that horrible stuff in his body.  I'm hoping that this new dose wont make him any sicker but we need that ANC to go down so we know its keeping those bad guys away. 

Lately Skyler loves to take a stuffed animal with him when he gets his back poke so he doesn't get scared, but when we got to the hospital we realized we left it at home.  The child life specialist was able to find him this polar bear though so he had something to comfort him downstairs.  He LOVED it and was so happy.  I was so grateful she did that for him.

Chemo and Xbox...what more could you ask for?

We are actually both getting used to this new line.  The dressing changes don't hurt him as much and its only a single lumen so its quicker to take care of everyday.  He likes flushing and hep-locking it for me lately.

When we were down in RTU waiting to go back, the wound nurse came and looked at his chest site.  The hole is healing nicely and she actually told me I can stop packing it now and just put a new bandage on every other day.  I have been having to stick some gauze like stuff into the hole in his chest everyday so the skin on top doesn't heal before the hole closes.  The girl sitting next to him is another child life specialist.  She is one of our angels.  Still after almost a year and a half Skyler will not talk to anyone at the hospital.  Most of the time he wont even acknowledge anyone is in the room or talking to him, but the last couple of times in RTU Skyler actually has been talking, laughing and playing with her!  It seriously is a miracle and it brought me to tears seeing him actually talking and playing with someone besides me at the hospital. 

This is another one of our angels, Robert.  He is one of the most caring docs I have ever met.  He truly cares about each one of his patients and goes above and beyond.  He has taken such good care of Skyler and even me.  I found out recently that he is leaving and I am so sad.  We will miss him so much!  He came to say goodbye to Skyler today and gave him a handful of gold dollar coins.  He wasn't even supposed to see Sky today but he came to find us downstairs to say goodbye.  This was after Skyler starting talking to the child life specialist so I was already emotional and started tearing up even more.  We will sure miss him.

This is back after he got the sleepy medicine.  The doctor is cleaning and prepping his back for the poke.

Sticking the needle in...

.              This is her taking out some of his spinal fluid.

And then replacing it with chemo.  I'm surprised these pictures aren't hard to look at.  Seeing stuff jabbed into my son has become a normal thing now a days.  Actually, this looks alot nicer than some of the things I have seen done to him. 

                   All finished and putting a band aid on. 

He woke up so fast today!  I hardly even had to wait in the hall at all and when she came to get me he was already totally awake and wanting crackers.  He loves the hospital crackers and asks for them every time.