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!!


Love,
Mom

 

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!

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.

Remember me posting about this sweet girl needing a bone marrow transplant after she relapsed from the same type of cancer Skyler has?

Well they found a match for her through donated cord blood and is recovering from her transplant right now.  Im so happy they found a match for her.  Today friends and family put together a big princess 5K for her...because Cancer is a Royal Pain....and Skyler was able to be a part of it.  There is a non-profit organization called Push To The Finish who are runners that push kids who arent able to run in races themselves.  They make it so kids that arent able to run due to sickness, or being in a wheelchair etc. can experience running in a race and crossing that finish line.  They really are an amazing organization!  When I got the email about what they do I knew Skyler would love to be a part of it.  He loves races but still isnt physically on the same level with kids his age and sometimes cries to me about how he hates being the slowest and never winning a race.  So I was very excited to tell him that he was going to be able to run/be pushed in a 5K.


The guy pushing him stopped before the finish line and let Skyler get out and finish the rest of the race himself.  It made me one HAPPY and PROUD momma to see this!  My mom was with me and started bawling, and I was grateful for the sunglasses I wore to cover the tears that were welling up in my eyes.  This was such a big moment for him.  Thank you Push To The Finish and everyone involved with putting together this wonderful event for making this possible for my little guy.


           This is the guy who pushed Skyler.  He is amazing!!

This is when he let him out to run across the finish line himself.  Look at him go!

LOVE this picture of him about to finish the race....and with a smile on his face!

These are the other little kiddos that were able to do the race too.  It was the cutest thing to see.

Here is the video of him running...

                                http://youtu.be/kE_4knMD2Ws




 

This week we were able to do something that Skyler has been looking forward to for many months.  He was able to go to Camp Hobe, a summer camp for cancer kiddos and their siblings.  I learned about Camp Hobe last year when some of his cancer buddies went, but we were still in the part of our journey where that wasn't even a possibility for us.  In fact I couldn't even wrap my head around how people could send their cancer kid to camp while still on treatment.  We are in such a different place now physical, mentally and emotionally that this was something I was looking forward to this year.  There is an option for them to stay at camp for an entire week but I chose to just do day camp which is two days.  Instead of driving home each night, a bunch of us cancer moms got a hotel to stay in.  Skyler was pretty nervous about going to camp while we were driving down there, but as soon as we got there and he got a cool shirt, hat, pin and backpack and a counselor took his hand to go play all of his fears left and he walked away with a huge smile on his face.  I had the option of staying with him and watching but he was having so much fun that I just left and went to a park with some of the other moms.  The second day he actually told me to please leave...it was so funny. They had fun activities and things to do with the kids the whole time. It was two days packed full of fun.  On the way to camp the second day I heard words that I never thought I would hear anyone say let alone my own son.  He said "Mom, I'm actually really glad I have cancer because I get to go to Camp Hobe!"

These are some fellow cancer moms and some of the most AMAZING women I have ever met.  

These three boys played together so well and are some of Skyler's favorite little cancer buddies!

Because most of these kids are still in treatment there are nurses from ICS that volunteer to be at camp.  This is Kathy, one of our favorite nurses in ICS

 
This is also another one of our favorite nurses, Amber.  She is so sweet!  It was so nice to see these familiar faces outside of the hospital and it was awesome for them to be able to see Skyler running around and playing like any other kid his age.

Don't worry that isn't lipstick on his lips, just a Popsicle.  This is on a bunk bed inside his group's cabin

In the back in the blue hat is one of Skyler's oncologists, Dr. Wright.  We love her and I'm so glad she was there to see Skyler having fun and talking.

I never thought I would ever let Skyler swim while on treatment and especially with a PICC line, but all of his other cancer buddies were (most have ports which they can swim with) so I let him get in.  I just wrapped his arm with saran wrap and put his sleeve back on and just told him to make sure that his arm didn't get in the water.  I decided before we left for camp that I was going to do whatever it took to make sure he had fun and felt like a "normal" kid while we were at camp.  That smile on his face made everything worth it!  He was so excited to be able to get in a swimming pool again.

This is one of my favorite pictures.  That girl in the picture with him is Brielle.  She just got done with her SECOND bone marrow transplant because she relapsed.  This was her very first time in a swimming pool too since she was diagnosed.  So this picture is very special to me.  Both of these kiddos have been at deaths door and back.  They are amazing little fighters!!

Skyler was so excited to be able to stay in a hotel again.  This is another thing I cant believe we did but it was SO MUCH FUN! 

This was Skyler's favorite thing about camp....the zip line!  He was looking forward to it the whole time and it just made his day getting all strapped in with with his helmet and harness.  Since he didn't want me to stay with him at camp I didn't get to see any of the activities they did, but on the last day I decided to go an hour before camp was over and watch him.  I hid behind a tree the whole time so he wouldn't see me.  I'm so glad I was able to see him do this.  I totally started bawling, good thing I had my sunglasses on.  I cant thank Camp Hobe  and all the volunteers enough for what they gave to my son.  They made him feel like a completely normal kid.  Its a place where we all know what each other has gone through and is going through.  They all know what PICC lines are and hearing aids are and no one gets any weird stares because they look a little different.  I will forever hold a very special place in my heart for Camp Hobe!

                       I love this picture...he looks so cute!!!!

This is Sky doing the zip line...

http://youtu.be/VXfZyWVzR1s

                                     Look at that smile!!

                                          Skyler's cabin.

The guy with the pink bandanna is another nurse at ICS named Mitch.  We love him, he is so good with the kids.

These are some of the BRAVEST, STRONGEST AND CUTEST kids ever!!!!

These fellow cancer moms are a huge support and blessing in my life.  I don't think I would be were I am today without them in my life helping me get through this cancer journey.  They all "get it."

                   Love this kid! Im so proud of you buddy :)

When it was time to head home we stopped at a little candy shop in town with a fellow cancer fighter Daphne.  Skyler loves her and they had a lot of fun picking out their candy. 

     I think I was just as excited to be in that store as they were. 

Our fundraiser garage sale turned out great!  Thank you so much to everyone who helped make this a success.  We had SO much stuff and actually have some great things left over so we are going to do another one at my house next week.  I love being able to do things like this, its my way of fighting back.  As a mother if someone hurt my child, I mean REALLY hurt my child, my first reaction would be to fight back and turn into the mama bear that protects her cubs.  Cancer has hurt my child.  Cancer has made my suffer unbelievable amounts of pain and sickness.  Doing everything I can to help find a cure for this evil disease is my way of fighting back.  Skyler always says he wishes he could punch cancer in the face, this is me punching cancer in the face as hard as I can!  Thank you to everyone who has helped me make this possible and for the overwhelming support we have received.

To help raise money for Team Super Skyler we are have a BIG garage sale tomorrow June 16th at Fox Hollow Park from 8am to 1pm, 655 North Fox Hollow Drive in North Salt Lake.  We have a ton of great stuff!  We will also have more information about CureSearch and you can also have us sign you up for the walk if you haven't already.  And big thank you to those that have donated items!!!  I hope to see you all tomorrow!

Today was daddy's birthday so Skyler decided that we needed to celebrate with balloons and cake.  He picked out a cute watermelon cake and some balloons and we went home and sang Happy Birthday and let the balloons go up to heaven.  Then Skyler cut us both a big piece of cake to eat while we watched the balloons disappear into the sky and into daddy's arms.

 HAPPY BIRTHDAY BEN!!!  WE LOVE YOU!

                        SUMMER FUN....