Skyler

We are going to start spotlighting some of our cancer fighting cuties on the blog.  Each of them have a unique story, experience and lessons to teach us.  We will be posting at least one story a week so keep checking back for more great stories on these amazing cancer fighting cuties!

I wanted to start with Skyler's story.  Skyler is a very special boy who will forever hold a special place in my heart.  I was introduced to his mom, Crystal, a few days after he was diagnosed.  Cami was only about a month into treatment and I wanted so badly to help them, but instead Crystal and Skyler helped me and taught me more than I ever could have done for them...

Skyler's story:

Written by his mom, Crystal

Skyler was diagnosed with Pre-B cell Acute Lymphoblastic Leukemia on August 17th 2010 at the age of four.  A couple weeks prior to diagnosis he was having fevers, puffy eyes, and unexplained bruising all over and around his eyes.  I took him to InstaCare and they just wrote it off as allergies and gave him an antibiotic, but instead of getting better he got worse.  He couldnt walk and wanted to be carried everywhere.  The last straw was when his belly started get really big and swollen.  I took him to his pediatrician who only felt his belly for a minute before he got a worried look on his face and sent us up to PCMC, his liver and spleen were very enlarged.  He said somebody would be waiting for us at the ER.  I knew right then something wasnt right and my uneasy feeling over the past couple of weeks became reality when they told me "Your son has cancer."  My heart sank and my world stopped but as I took one look at his limp, swollen, bruised body I knew it was true.  We were admitted that night to the oncology unit.  Walking into ICS is something I will never forget as I looked around at the bald little kids playing.  This was real, my son was now one of those kids.   The next day we found out which type of Leukemia he had (ALL) and Skyler went in for surgery to place a port in his chest so they could pump poison directly into his heart.  We were told that we would be inpatient for about six days and then would be able to go home and do his chemotherapy treatments outpatient for the next three and a half years.  Those six days turned into four and a half months in the hospital, three of those months were spent in the Pediatric Intensive Care Unit on life support.  

Everything that could go wrong did. That first week Skyler developed Tumor Lysis which completely shut down his kidneys putting him into renal failure.  They quickly placed a dialysis catheter and started him on dialysis.  That first week he gained over ten pounds of fluid from his kidneys not working.  He got so big to the point where he couldnt move and developed a bad wound on his bum that he eventually had to have a would vac to close and numerous times having a surgeon scrape out.  It took over 7 months to heal.  Skyler also developed an invasive fungal infection that started out in his sinuses.  He went in for numerous surgeries to try and scrape them out but the surgeon eventually stopped saying there was nothing more he could do for him.  If he took anymore out it would leave Skylers face completely disfigured.  The fungal infection quickly spread throughout his body leading to failure of five of his organ systems.  His lungs were so full of fluid that he stopped being able to breath for himself and they put him on a ventiltor and had a machine breath for him.  He was completely sedated for the six weeks that he was intubated.  They also had to place six different chest tubes to drain fluid and air that were in his lungs.  They also placed drains in his belly to drain fluid from there also.  Skyler also had a problem keeping his hematocrit and his platelets up leading to well over 100 platelet and blood transfusions.  They eventually removed his spleen because it had quit doing its job and they thought thats what was eating up all his platelets.  He was also in isolation alot of the time due to all of his infections he developed, meaning the staff had to put gowns and masks and gloves on before entering the room.  He also had to have 5 different dialysis catheters placed in his neck and chest because they either got infected or just stopped working.  At one point I counted 17 different tubes and lines pumping stuff into and sucking stuff out of him.  He was covered head to toe with tubes.  It was a very noisy room full of pumps and machines that were keeping Skyler alive. When one of your organs goes into failure it decreases your chance of survival, so with five of Skylers organs that were failing it decreased his chance of survival by alot and we were told at one point that he wasnt going to make it, that we were going to have to say goodbye.  I remember sitting on the bed holding his warm little foot crying and thinking how in the world was I supposed to say goodbye to the one person that I loved more than anything in the whole world.  How could I say goodbye to the most precious, perfect little innocent boy that was my flesh and blood?  Skyler did what he does best though and surprised everyone, he held on.  He's a fighter, a miracle.  Slowly but surely I was able to see my son come back from the brink of death. I got to experience seeing my son opening his eyes for the first time after so long without seeing them.  I got to experience hearing his first words (which were I want my mommy) for the first time again after months of longing to hear his sweet voice.  I also got to hold him in my arms again after months of only being able to hold his hand or give him a kiss.  I got to experience his first drink, sitting up, standing up and taking his first steps.  

These were things I will never forget and things I will never take for granted again.  Skyler taught me what a real superhero really is because he is one.  He taught me to never take the little things for granted because you never know when they might be the last.  After one long hard painful year Skyler was finally able to hit maintanence, the phase of treatment that he will be in for the next three years.  When he is finally able to be done with treatment he will have gone through over fours years of getting poison pumped through his little body.  Life will be forever different for him because he will have to be on meds for the rest of his life because of his spleen being removed, he will also have to wear hearing aids because one of the antiotics he was on caused him to lose hearing in both ears.  Even though this cancer journey has been hard and I have seen alot of bad, I have also seen alot of good.  There are so many good people in this world that have helped us get to this point and I will be forever grateful.  Cancer changes everything.  I am a differentperson because of it, but I believe I have changed for the better.  Cancer has taught me to love more and enjoy life. 

 Thank you Crystal for sharing Skylers inspiring and amazing story.  You are both amazing!  

To read more about Skyler you can visit his blog.

crystalandskyler.blogspot.com