Thursday, August 25, 2011

This picture makes my heart happy!  Farewell ICS and farewell to your giant bags of chemo!


We hit a HUGE milestone today.  Today Skyler finished up his very last high dose chemo and is officially in maintenance!  We have waited over a year to say these words.  Finally there is a light at the end of the tunnel.  For Skylers type of Leukemia, maintenance is usually hit by the sixth month but we all know that Skyler doesnt follow the rule book on how to be sick.  It may have taken us over a year to get here but we are here and thats all that matters.  Maintenance means the end of the harsh chemo and the beginning of a much easier course of treatment.  For the next three years Skyler will take oral chemo at home everyday and will only have to go into clinic once a month for chemo through his line.  Also normally he would get his back poke once every three months but since he is high risk, meaning he presented with a very high white count when he was diagnosed, he will get his back pokes every time he goes in but has the third month off.  They also try and keep his ANC from getting too low so he will be able to start doing more things and live somewhat of a more "normal" life.  What is normal anymore anyway?  I dont think our lives will ever be the same "normal" it once was.  We will just have to find our new normal because we will still be doing this for the next three years.  I cant believe that when we are finally done with treatment it will be over 4 years.  Skyler will be eight years old...crazy.
I am so excited for Skyler and he is so excited too.  On the way home he kept singing "Skyler is in maintenance, Skyler is in maintenance!"  It was so cute and I may have gotten a little teary eyed.  Even though Skyler is in maintenance now we still have to be careful because something as little as a cold can turn into something dangerous for him.  But since he isnt getting such harsh chemo anymore he should start feeling so much better and get stronger everyday.  Right now we have a two week break from all chemo before he goes into clinic.  Im very much looking forward to this time off.  I still cant believe that this is real and we are finally here.  Its been such a long hard road for Skyler so far and I hope maintenance treats him well.  He definitely deserves it.  He is still having fevers that no one can figure out an answer to but I will post more about that later, for today is a day of celebration.  I just cant say this enough SKYLER I AM THE LUCKIEST MOMMY IN THE WORLD TO HAVE SUCH AN AMAZING, STRONG, COURAGEOUS, SWEET, FUNNY AND PERFECT SON AS YOU.  YOU ARE MY LIGHT, MY WORLD AND I AM SO PROUD OF YOU.  I LOVE YOU TO INFINITY AND BEYOND!

On the way out of the parking garage at Primarys when we were headed home I heard Skyler singing this so I turned my phone on.  So cute.  Also at the end of the video you can see a little of why Sky needs hearing aids...he says what a million times to everything I say.  Its dark at the beginning because we were driving out of the garage

video

15 comments:

Sadie said...

So happy for cute little skyler!! I saw him through the window today and he is such a cutie:-) CONGRATS SKYLER!!!!!

Erin said...

What a fantastic day and a great milestone to meet!! I hope maintenance is as easy for Skyler as it should be. He SO deserves a break.

Erin

Ashleigh said...

Way to go Skyler!!! What an amazing day for you and your mom! You are amazing and so inspiring!

Brandi said...

Congratulations and way to go Skyler! What a great day for the both of you!

The Morrill Mama said...

YAY FOR SKYLER!!!! We are constantly praying that things keep moving forward and strength for both of you!!

Sonja said...

Hooray! I am so happy for you both!

Anonymous said...

woot woot!!!! TEARS OF JOY TODAY!!! Good luck sweet boy!! we will continue to pray for you!!

Great job momma!!!


zachs mom (Angela)

Piano Mom said...

That first picture just is a MIRACLE! Seriously, a year ago when we met you guys I never could have imagined him walking out of Primary Children's looking like a regular little guy! I am so happy, joyfully happy for you Crystal. It has been a long, very long and hard road for you and Skyler. You have been in so many of my prayers (and will continue to be). This is a wonderful milestone to have reached. We are so grateful for this amazing blessing!

kate said...

I am so happy for you guys!

Lacy Allred said...

What a happy song! "S-K-Y-L-E-R is in maintenance. S-K-Y-L-E-R is in maintenance!" I wanna sing it at the top of my lungs. I am soooo happy for you guys!

Anonymous said...

Yeah for Skyler. I hope maintenance will be easier on his little strong body. He is amazing.

Susi said...

Yeah!!! Congrtulations to you and Skyler on reaching this milestone!! :) So happy for you!!

Dani said...

I just read this and your one year post. Seriously no kid should have to go through what Sklyer has in the last year. He is one amazing fighter with one amazing mama! Congrats on making it to maint. Now lets hope that he decided to stick to the book a little more this year!!! Love you guys!!!

Lisa said...

Just found your blog and can now follow Skyler's journey. What a fighter! I'm praying for both of you and can't wait to see Skyler riding his bike in our neighborhood!

lindsay Roscoe said...

What an amazing beautiful boy!! We pray for him always! Now what can we do to help you guys??? We will do anything!