Tuesday, August 16, 2011

One year ago today I heard one of the worst news you could hear as a mother "Your child has cancer"  I just sat and bawled in that emergency room as my son layed on a gurney too sick too move.  I just couldnt believe that he had cancer flowing throughout his little body, but in my heart I knew it was true.  This was the answer to my weeks of knowing something was just not right with him.  At that moment everything made sense.  The mysterious bruising all over, the swelling, not being able to walk and asking my why I was hurting him all the time with just simply getting him out of his carseat.  So many thoughts ran through my head but I could never have imagined what lay ahead for my precious boy in the year to come, especially those first four and a half months.  We were admitted that night to the ImmunoCompromised Unit.  As I walked through those doors another wave of emotion and reality hit as I saw little bald children hooked up to IV poles playing in the playroom.   The next day the diagnosis was set in stone when they told me what type of Leukemia he had.  Pre B cell Acute Lymphoblastic Leukemia.  He went into surgery that day to place a port in his chest that went directly into his heart, so they could pump poison throughout his body to kill those horrible cancer cells.  We were told he would stay there for about a week and then we would be able to do the rest of his three and a half years of treatment outpatient.  That one week turned into 4 1/2 months, three of which were spent in the ICU, and half of the time in the ICU was spent on life support. Within a couple weeks Skyler developed tumor lysis that completely shut down his kidneys and he was put on dialysis for renal failure.  He also developed an invasive fungal infection that took over his whole body which led to failure of five organ systems.  It started out in his sinuses and he went through countless surgeries to try and scrape it out.  Eventually the surgeon stopped operating and told us there was nothing more he could do, to get it all out would leave his face completely disfigured.  Each time an organ fails it decreases your chance of survival, so with five organ systems that had failed it decreased his chance by alot.  I was told later that no one thought he would ever get off the ventilator because most kids that sick dont survive.  I still to this day have flash backs to the most horrific night of my life when they told me to say my goodbyes because he probably wouldnt survive the next couple of days or maybe even the night.  Family was called and gathered around while I sat crying holding his warm little foot wondering how I could possibly say goodbye to the one person I love more than anything in the whole world, he is my world.  I wished with everything in me that I could trade places with him.  Skyler surprised everyone though and held on.  He is such a fighter, a hero.  He survived months of dialysis, six weeks completely sedated and on the ventilator with a room full of machines keeping him alive.  He had his spleen removed, fifteen different lines placed to pump the life saving chemo, other medicines, blood and platelets into him.   He had well over a hundred platelet and blood transfusions.  At one point they actually ran out of places to place a line that they ended up putting one behind his knee.  He was covered head to toe with tubes putting stuff into and sucking stuff out of him.
I wouldnt wish upon my worst enemy the things I saw done to my son.  I have horrible flash backs and nightmares to this day.  I have felt emotions that I never want to experience again in my lifetime. 

 Along with so much pain and heartache that  this past year has brought, there has also been so much good as well as weird as that seems.  I got to experience the amazing joy of seeing my son open his eyes again for the first time.  I got to experience his first drink, the first time he talked and sat up and even walked again for the first time when these tasks once seemed impossible.  I got to experience the selfless service of others.  People I didnt even know helped carry me through days when I didnt know how I could go on.  I learned just how lucky I am to have the best family in the world.  My mom spent six weeks sleeping in a rocking chair without leaving my side.  My dad came up everyday.  And my brothers and sisters and extended family were there whenever I needed them.  I have learned things about myself that I didnt know before.  I learned that I am stronger than I thought I was and learned what kind of person I want to be from being on the receiving end of such wonderful acts of kindness.  I have learned to never take the little things for granted because you never know when those might be taken away from you. 

I still cant believe it has been one year.  It seems like a lifetime ago that my world was turned upside down but then again it went by so fast.  Thank you so much for all the love and support that you have shown me and Skyler.  I definitely couldnt have survived this last year without it.  Thank you for taking the time to read about my son and being apart of this cancer journey with us. 

"Life isnt about weathering the storm, its about learning to dance in the rain."

This is Skyler a week or two after diagnosis.  He went into renal failure so they placed the dialysis catheter you see sticking out of his neck.

This is after they found the fungal infection.  They had to remove his central line and dialysis catheter that were infected by the fungus.  The bruising on his neck is from the line removal.  He also got severe burns from the EKG patches.  He is also starting to swell from his kidneys not working

This is after they placed another dialysis catheter.  He gained over 10 pounds in one week from retaining so much fluid.  Those red lines are his blood going out of his body, getting "cleaned" and going back in.  I about passed out the first time I saw the blood start coming out and going through the machine.

The fungal infection spread to his lungs along with fluid making it difficult for him to breath.  The placed him on the bi-pap for support.

It got to the point where he couldnt breath on his own so they had to intubate him so a machine could breathe for him.  They also had to place a new dialysis catheter.  He has had five different dialysis catheters

He is so swollen and bruised from being in renal failure and having low platelets.  He also started turning yellow from his liver shutting down.  He has had a total of 6 chest tubes also to drain fluid from his lungs

Those are pressure sores on his face that he received from the different bi-pap masks before intubation.  He also had a very bad pressure sore on his bum from not being turned when he was so swollen.

   These are all the machines that kept Skyler alive for three months.  It was a very noisy room

Skyler was so fragile that it took alot of people to lift and move him.  He was so fragile that even I couldnt hold him.  It was so hard not being able to hold my own son for months.  He was in isolation alot of the time due to all his infections, that is why they are wearing those yellow gowns

  This was right before they took hom down to remove his spleen.  And yet again another dialysis catheter

Skyler spent many holidays in the hospital




New Years

And Easter

It has been quite the year, but we made it...Skyler made it.  And here he is today my little superhero and one heck of a fighter!

I love you Skyler!


Tammy said...

He truly is one inspiring, amazing, strong and blessed little boy. He is truly a chosen little boy and he definitely has a mission here on earth that is not done yet. You are also a strong and amazing mother.

Sarah said...

Wonderful story. Thank you so much for sharing. Skyler is amazing. :)

Jen Beckstrand said...

This one had me in tears. Of course. I can't believe it's been a year already. I still remember the feeling of our family's world being turned upside down and the nights spent in the hospital with you guys. I know my experience isn't even 1/100th of what you have gone through and are going through! You two are both so strong and so loved. Thank you Skyler for letting us be a part of your miracle!!!

Zombie-mom-of-3@blogspot.com said...

Wow Crystal!! I just want to stand and clap and cry in rejoicing for you and your little guys' triumph. You guys are serious hero's!! Keep hangin strong. We love ya
Rebbecca (Braden) Allen

Anonymous said...

Yay! We're doing it! I read this on the FrontRunner train usually. Skyler gives me hope. Thank you Skyler and Crystal!

Chelsie said...

You guys have had quite the year. And you've both proven yourselves to be strong. You are an amazing mother. Truly. And Sky is such a fabulous kid. Here's to next year being filled with continued strength and much joy!

Anonymous said...

You don't know me, but I came upon your blog thru another blog shortly after Skyler's diagnosis. I have been following it ever since. I have been praying for you and Skyler continuously. You are a woman of incredible strength and Skyler is one tough kid! This post really shows what you both went thru over the past year and what a great way to celebrate by riding his bike! May God continue to bless you!

Nat Lud said...

I found your blog from my friend Kristin's (Brinley's mom). You are an amazing mama and Skyler is truly a miracle boy! I love that quote about dancing in the rain. It's so very true. Best of luck to both of you from here on out!

Brandi said...

I don't think I have the right words, but just wanted to thank you for putting your story out there for all of us to follow. Your story has made my family want to be better people and help others in need. We are so inspired by you and Skyler. It is unbelievable to look back at what he has gone through this last year and how amazing it is to see him riding his bike today. He has a purpose here on earth and will do great things! You are both such an inspiration to so many. Thank you again for sharing your story.

Shaylynn;) said...

I have no words, just know that I have so much hope invested in you and your little one..

Best wishes for an even better year.

Tonya said...

I am sitting here on my lunch break doing my daily check in on Skyler's progress. I am now bawling and my co-workers think I have totally lost it. I just said, "I'm reading about Skyler", and they all knew. I have been following your wonderful son's journey over the last year since it began, they have seen me cry over the good, cry over the bad, they took my pleas for prayers to their own homes and children. My family asks about Skyler as if he were a cousin. We love that little boy of yours and pray everyday for him. He is such an ispiration, and a little fighter. The heavens knew what they were doing when they sent him to you. You are an angel in disguise and he so lucky to have you. I hope that this year will bring even more wonderful opportunities for you and Skyler, and we can continue to see him grow and prosper. Thank you so much for sharing your story!

suzie said...

OH CRYSTAL........I am a Blubbering, watery mess.....I can NOT NOT NOT stop crying. I decided to pull up ur blog to check on ur lil skyler while in my car @ my 6 yr old sons school abt to go in to help w art and I don't think I can regain my composure. Crystal, I can NOT tell you ENOUGH how much ur SKYLER is my INSPIRATION.....I can't even fathom ALL he has and continues to endure and yet....he does it all with a smile and with the cutest little eyes and voice. I know I tell u this lots...but I stand by it and KNOW it to be TRUE. Ur skyler is def one of our heavenly fathers choicest!! What a special, lucky mother u are to be blessed with him in ur life. Thank you for allowing myself and my 2 kiddos to "know" ur Skyler. I am just BLOWN away, he is such a testimant of courage, faith and fight! Dynamic duo!

Tonya Post said...

Crystal you don't know me but I'm an old neighbor of Ben and Kathy when they were my neighbors in St. George...another old neighbor got me watching your blog..
I check in everyday to see how Skyler is doing.
today has brought me into tears. I can't believe the journey you have been on and the pictures are just so hard to look at. I pray everynight for Skyler ...and it makes me so happy to see the progress of him riding his bike..May God be with you two!

Mig said...

You and Skyler have opened the eyes of so many people and made me, for one, realize how blessed I am. What an amazing little family you are. Thank you for being such a great example of courage and faith.

Padilla's said...

Amazing. I have been reading from pretty much the beginning and I couldn't be more touched and more proud of YOU and SKYLER! He is nothing short of a miracle. He is such an inspiration to us all. I wish you two all the happiness in the world.

Rachel Padilla

Kelly Lund and Kids said...

We LOVE you Super Skyler!!! May you keep soaring back to super strength and good Health!
Love Kelly Lund and Kids

Shaylynn;) said...


This is a new song, dedicated to cancer fighters..

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.
I’m gonna love you through it.

If you have time;)
Sorry to post twice, but this song came up on my aol feed & i thought of you.

Josie said...

Wow! Bless both of your little hearts! I can't believe the journey you've been on this past year. So, So glad he is doing better. Hope things keep looking up for him. What a little cutie! You are both so inspiring to me.

Natty bee Seely said...

I too pray for your little Skyler and hope this year brings only happiness and good will towards you both. You have made me hold my kids a little longer, a little closer, and be a little more patient. You are a wonderful mother. I wish you both complete recovery from all of this years nightmare moments.

M-Cat said...

I am constantly amazed, inspired and moved by yours and Skyler's story. Your the first one I look for in my reader, you are the one I think about when I have been off my computer for a few days. I am constantly praying and hoping that the next update you post is filled with good news. I am elated when it is, and heartbroken with you when there is a downslide.

As hard as it must be to share, I appreciate your willingness to do so. You bring awareness to childhood cancer as well as inspire anyone who reads to, if nothing else, be a little kinder and more appreciative of their own troubles.

Hang in there - there are so many of us out here in the WWW who are praying and pulling for you!


callie said...

Holy Crap, I bawled for an hour after I read this! I've followed your story for the last year and you are amazing, inspiring, and one heck of a woman! Skyler is one amazing, awesome, determined, little boy! I pray for you two every night! God bless you both!

Anonymous said...

I came across your blog from another blog I was reading. You have both been an inspiration to me. I live in Ohio so just know that you both have prayers from people you wont EVER KNOW but that you have a HUGE impact on!!! Best wishes and prayers!!

Sonja said...

I didn't know just how perilous his cancer journey has been. I am amazed at how much you both have suffered! He is seriously one of my biggest heros--and you too. This post made me cry, but it also has filled me with so much hope. There is always hope.

heyhotmess said...

Crystal, I check your site everyday. I am so happy that Skyler is doing better! I wish the best for you and your sweet boy. Thank you so much for keeping this blog.

Amanda said...

Love you and Love him. Those pictures take my breath away.

amber said...

I check your site every day and I cheer with you on good days and cry with you on bad days. This was an amazing post, a reminder of where he was. I pray for lots of strength for both of you.

“This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”

Anonymous said...

Oh sweet sweet angel boy,, skyler is a miracle. Thank you so much for sharing so much of your life. Crystal you are an amazing mommy, May god continue to watch over you both.

zachs mom

Brittany said...

You don't know me but I came across your story and blog from the Bountiful Triathlon. Wow. What a journey you have been on and will be on. You are so amazing and strong, and little Skyler is just SO strong and determined. Thank you for sharing with us your story of inspiration and hope. I pray for Skyler and hope that things continue to get better for both of you! God bless you and your adorable son!

We are the Mogles said...

what an incredible little super hero you have. skyler is an amazing little boy with a lot of fight! you are incredible mother and an inspiration to many. we will continue to pray for our "cancer fighting cutie" friend.
lots of love
Dylan's mom
Tara Mogle

Wendy Burr said...

I'm trying to decide what to say to this. My experience has felt like it's so rough, but it seems so insignificant compared to yours. Someone told me today that now I get to learn how to be super mom, but I feel like if I can be 1/10 the mom you are, I'll be happy.

I just completely fell in love with your little boy. What a fighter! He's got to be meant for something truly great in this life!

Erin said...

I found your blog very soon after Skyler's diagnosis. He's come a long way and has fought so hard. You are a fantastic team - without you, Crystal, Skyler wouldn't have the love and support he has needed to get where he is today, and without him, you wouldn't know the strength you have within you. You are both an inspiration to your readers.

May the strength Skyler has shown over the past year continue to carry him through to Maintenance and beyond. We will continue to pray for an easier road for you both.

Erin & Nolan

Vanessa said...

You don't know me but i came across your blog from a friends, i started reading about your sweet skyler shortly after he was diagnosed.. You are the most amazing and strong mom, just looking at the pictures and reading his story puts me into tears everytime!! You have an amazing little boy and i hope your family the absolute best!!!

Melissa said...

This whole post made me cry! You guys have been through so much! Thank you for sharing this with us. It makes me enjoy the little things in life a lot more than I used to! You and Skyler are both SUPER amazing and strong!

IWearLeukemia said...

this has brought tears to my eyes...im goin threw the same thing with my son right now...god bless ur angel

Scott Smith said...

Skyler, you are total inspiration my man. God bless you and your family!

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