Tuesday, July 31, 2012

I officially have a KINDERGARTNER folks!  I still cannot believe that Skyler is old enough and healthy enough to go to school.  Each time I drop him off I have the biggest smile on my face and tears in my eyes.  It truly is a miracle and something I have been looking forward to since I was pregnant with my little man and something he deserves more than anyone I know.  I just cannot express in words the love and admiration I have for him and his continued courage in the face of all the many trials he has had to endure at such a young age.

This is the start of a new chapter in our lives.  Along with starting school we have moved into our new place.  Talk about one hectic week but we have finally started getting settled into our new home and Skyler's new school routine.  It has definitely been an adjustment for him too.  He is really struggling with trying to find his identity right now.  He is still in the midst of receiving chemo everyday and struggling with the after effects of such a harsh road of his cancer journey, and now trying to fit in a normal life with the rest of his school mates and trying to move past cancer being so much of his identity.  He is starting to get upset when he sees the things I post on here about him and doesn't like talking about his PICC or his hearing aids or his scars.  I have decided to respect his wishes and think its time to take a break from blogging for awhile.

This blog has been such a big part of my life these past two years and has not only been my way of keeping family and friends updated about his treatments, but it has been a form of therapy and healing for me.  I learned the hard way after my husband died that keeping my feelings in and hidden from the everybody was the wrong way to go about things.  I tried to block everything out and just go numb.  I just had to pretend that that my part of my life didn't exist because it was just too painful to think about.  With Skyler I too have had to block out some parts that are just too painful to think about or go there again, things that were too hard and too personal to write down for the world to see, but for the most part I have put everything out there.  I have been able to put my feelings down in words, get them off my chest and move on. It has also been my way of opening eyes the way mine were that kids get cancer too.  The word that grown adults are scared to hear, kids hear them as well.  Its an ugly world that doesn't get much attention and is extremely underfunded.  Our kids deserve so much more.  If I have helped in anyway to give these kids that know suffering more than most a voice than I am happy.

 I don't know who reads this blog but it somehow makes things easier knowing that there are people out there who know what we are going through and have helped carry me through this process with the support of just reading what I have to say. We have received so much support and so many of my prayers have been answered by such wonderful people, some whom I have never even met in person.  I am in awe of the generosity we have received and the many amazing friendships I have been able to make throughout this process.  I have come to really know that you can never really fully understand pure joy and happiness without experiencing pain and sadness.  It just makes you appreciate things so much more and look at the world so differently.  Thank you to everyone that has helped ease the pain and burden that having a child with cancer brings.  I just cant imagine going through this alone.  Thank you just doesn't seem like enough though.  I wish I could personally hug and thank each and every person that has been there for us through this cancer journey, but I cant.  There are far more people than I can count that will forever hold a special place in my heart.

We are still far from done with cancer.  Skyler still has another year and a half of chemotherapy treatments if everything continues as planned, but for now our lives need to be focused on moving on and beginning this new exciting chapter of our lives.  I am still very involved with CureSearch though and still have our team for the walk.  I have a page set up on facebook to keep everyone updated on the walk and helping people get registered for Team Super Skyler so you can still follow us there http://www.facebook.com/#!/teamsuperskyler

And to my amazing, strong, courageous, funny, handsome sweet boy with a heart of gold, I LOVE YOU!  I love you more than words can say, to infinity and beyond.  You are a true superhero in every sense of the word.  I am so proud and lucky to be your mother!  I don't know what I did in our previous life to be able to get the privilege to be your mother but am so grateful.  You are my life and I cant wait to see what this world has in store for you.  It must be something amazing because you sure are here for a reason.  You fought and beat all the odds that were stacked up against you.  You can achieve anything you set your mind to sweet boy because you have already showed the world that you can!!



Friday, July 20, 2012

I cant believe another month has come and gone.  That means one more IV chemo down and crossed off the list.  This month Skyler got a break from his lumbar punctures and only had to go in to get Vincristine through his line.  We were in and out within 20 minutes!  That is record time for us.  Skyler's foot has still been hurting him alittle but Dr. Lemons was able to move it ok so he wasn't too concerned.  Since his bones are so weak it will just take time for the pain to go away.  His ANC was also too high again so they upped the dosage of his oral chemo.  Other than that everything went really well.  He is doing great!

This summer we have alot of Skyler's cancer buddies that he was diagnosed close to that are finishing their journey with cancer and are able to go off treatment.  In fact, the day we were in clinic our close friend finished her very LAST IV chemo!  Most of these kiddos are girls because girls only do two and a half years and boys do three and a half, but it makes me so happy to see them move on to the next phase of their lives.  A phase where chemo and pokes and pain aren't apart of it.  It gives me hope and lets me see that there is a light at the end of the tunnel.  Skyler still has another year and half of treatment left.  That may sound like a long time for people, but since we have already been doing this for two years I know we can do it.  Today I was at home depot and saw one of Skyler's dialysis nurses from way back at the beginning when he was so sick.  It's always nice to be able to see people who were there at our lowest point, my rock bottom and then to see us today living life and doing well.  I am so grateful to each and every one of those people that helped make that possible for us! 

 We have some big changes coming up next week that are going keep us busy.  First, we will be moving.  Our house we are renting now is infested with ants and I just cant have Skyler living in that environment.  We have already sprayed a couple times and I'm not willing to expose him to anymore of those chemicals, so our only option was to move.  I like change so I'm kind of excited about it.  Second, Skyler will be starting kindergarten!  I cannot believe that this time has come.  I remember last year when he was supposed to start and thinking there was no way I could ever send him into a germ infested atmosphere, but we are in such a different place both physically and mentally that I'm not really nervous about it.  I'm just SO EXCITED for him!!  I know I should probably be nervous but I have come to accept that there are just things that I cant control.  I know it is a possibility he will catch something but we will cross that bridge when we get to it.  This is going to be so good for him and I just cant stop smiling when I think about him sitting in a classroom with a room full of friends learning how to read, do math, etc.  He loves learning and know he is just going to love it!

I didn't get any clinic pictures this time but here are some pictures from our first trip at the zoo since dx.  We went with all his cousins and he loved it!

Sunday, July 8, 2012

This summer has been wonderful so far.  Skyler has been having alot of fun playing and being active.  He doesn't hold back.  He jumps off anything he can and runs all over the place.  It was only a matter of time before he got too brave and hurt himself.  The other day he was running down the stairs and took a tumble landing on his foot.  I was hoping that after resting it for a bit he would be ok, but in the morning he still couldn't walk or put any pressure on it.  He had to crawl or be carried everywhere so we ended up in the ER getting xrays.  Thankfully it wasn't broken, just really bruised.  We also found out that he is very osteopenic.  If you took an xray of my foot the bones in the xray would be all white.  In Skyler's you could really only see the outline of his bones and they were hardly white at all.  The chemo has really taken a toll on his little body and it makes me so sad.  This was just another reminder that there is still poison killing the good as well as the bad in his body.

He has finally been able to put pressure on it and has started walking again, but it still looks swollen and hurts him all the time.  We have clinic in a couple of weeks so we will follow up with his oncologist about it then.  Even though he is in pain it hasn't slowed him down.  I think he is just so used to hurting that his pain tolerance has increased and he has just learned how to live with it.  I cant wait for the day when pain isn't apart of his daily life and this all becomes a distant memory to him.

                                                      Waiting in the ER for xrays.