1.28.2009

Living Each Day


Kyle continues to amaze us. Each day he finds new ways to communicate with us, make us laugh, show us how much he loves us, his friends and his collections! Kyle remained in the latest clinical trial for two weeks. He had a set-back on the first Saturday of the trial when he woke up unable to do many of the things he had been able to do just the night before. In true Kyle fashion he rose to the occasion for his 8th birthday party, truly enjoying each friend and each gift. 

The following day we decided to put him back on steroids in a effort to reduce swelling that had increased dramatically during the previous 6 weeks. Kyle, as expected, made slow progress in the fight to keep symptoms at bay. The hard part of all this (one of many hard parts) is we need to make the tumor smaller to give his nerves more room to repair themselves in order for the symptoms to subside. Although we could reduce the swelling with steroids, we have no choices of available treatment to reduce the size of the tumor. This is the awful reality of DIPG. After radiation the treatment options hope to stop the tumor from getting bigger, regression is the miracle result we continue to pray for each moment of each day. Weighing all our options along with the current place in which we find ourselves, Kyle has stopped taking both the steroids and the clinical trial drug. 

Kyle has been visiting his friends at school each day. He is always excited to share the new pieces he is adding to his various collections. His friends are great about writing to him on white boards and are learning his own variation of sign language. He likes to stay in the lunch room after his own lunch period to have lunch with his brother! Last Friday was a particularly fun sharing day as Kyle's friend, Campbell, let him take her litter of baby bunnies (they are just 3 weeks old) to share with his class. Kyle has picked a precious white bunny with a brown stripe on its back and brown ears as his own. Its name is Easter! Easter makes visits to our house too! He sits on  Kyle's lap and lets Kyle pet him for hours, occasionally hopping up Kyle's chest to lick up any yogurt that might still be lingering on his shirt or chin. It makes us all laugh. Kyle and his dad make daily trips to Boulevard Park for a walk and to sneak a hot chocolate at Woods Coffee. And no day is complete without some time spent playing WOW with Kim, Sean, or Gil who are happy to take direction from Kyle as to what he would like to do with his character, Kyliewylie. 

We have no idea what each day will bring. Instead we relish each moment as it comes. Cherishing each of Kyle's smiles, laughing as he dances when his WOW character levels up, delighting in the hugs and many times he tells us how much he loves each of us. Under all the outward symptoms of DIPG Kyle is still Kyle. And it is Kyle who makes each moment of each day bearable for everyone around him.

33 comments:

Anne-Marie said...

It sounds like Kyle is making the most of his time with friends, bunnies and family.

We're thinking of you, Nicolas and Kyle often.

XXOO - Anne-Marie & Chris

Anonymous said...

Hey Kylie!

I think about you every day and I miss you so much! Last week Seth and I went to Boulevard Park and we found some Sea Glass. Remember when you and me and Kola went there a couple summers ago?

Love you Buddy!

ERIN

Kelli said...

Kyle,

I had some police officers come make dinners at DD and they are all thinking of you! They will be sending a police patch for your collection...I thought that was sweet! Mallory and Hannah wear their Kylie shirts to bed and pray for you each night! You are such a beautiful boy inside and out...I can still feel your hugs and see your thumbs up! Even way down here in the HUB city! (have your mom explain!) :) We love you!

Kelli, Jamie, Mallory and Hannah

Blakely Campbell said...

Hey Kyle,
I love,love, love, love, love, love, love you so much!!!
I miss and hope to see you soon!
OXOXOXOXOXOXOXOXOXO
~Blakely

Rachel Myers said...

Kyle - I LOVE that your bunny is named Easter - how perfect! You must be pretty high up the WOW ladder by now. Nicolas tried to tell me a little about how WOW works, but I have to admit I'm still not too sure.
You are such an inspirational little boy. We are all very proud of your strength and determination.

Much love,
Rachel

Dana Hope said...

Thank you for the update Christin. I love reading your posts and continue to be amazed and humbled by your contagiously sunny disposition. You are a beautiful family and just being on your blog warms my heart.
Special thoughts and unending prayers from our home to yours.

Love, The Carpenters

Anonymous said...

The love you inspire is amazing and so incredibly grand. I think of you all each and every day throughout the day. to more and more beautiful, smiling moments.

Lots of prayers and light-

kathy w and family

Anonymous said...

Dictated by Neha:

"Hi, Kyle! How's it going? I love ya! Love, Neha"

p.s.

Nikhil (from shower)yells "Hiiiiiiiiiii, Kyle!!!!"

Tiffany said...

Hi Kyle,

We loved being able to visit with you yesterday. Hailey loved playing with your little buddy Gunner, Carson had fun watching you and Kim play WOW and getting to "help", I just loved being able to snuggle in on the coach with you and have you show me your latest pieces to your collections. I am so glad that your house is so full of so many people who love you. You are like a little superhero who never gives up. You are one amazing kiddo who is always making me smile. We love you lots, Kyle.

Love and prayers from the Gutierrez Family

Anonymous said...

When life gets hard, and it does get that way for me, as it does for us all, I just think about your beautiful Kyle face and of your AWESOME spirit and it breaks down that hard rock of life into tiny grains of soft sand. You, sweet Willhite-Roger's definitely make the world a better, stronger, open, loving place. Thinking about you every day and sending relaxing walks on those soft sand beaches.

Anonymous said...

Kyle,

Thomas and Oliver Watson say hello. We're thinking about you and praying for you every day.

Anonymous said...

Hey Kyle - I check your blog almost every day and I'm always happy to hear what you are doing. Maybe someday we'll see you at Boulevard Park. Seth and I take walks there sometimes. Did you know Seth has a bunny too? His bunny's name is Dusty. Dusty's fur is dark gray and very soft. Dusty lives under Seth's mom's porch. Dusty reminds me a little of the bunny you and Nicolas used to have - I think his name was Storm Cloud. What a cool name. I think Seth first got the idea of having a bunny from you. I'm still sending you positive thoughts, but I realize that it might be hard to feel each individual one, because you have so many people sending you so smany positive thoughts all the time. ~Ethan (Seth's dad)

Anonymous said...

Keeping Kyle close in our thoughts and always in our prayers.

Jim (www.jjsmiracle.com) (www.icouldbeyourchild.org)

Kayley Westra said...

Hi Kylie,
Thank you and your mom for another beautiful entry. I have learned so much about life and love through you and your family. I'm so proud of you.
Love You, OXXO
Kayley & family

Kayley Westra said...

Hi Kylie,
Thank you and your mom for another beautiful entry. I have learned so much about life and love through you and your family. I'm so proud of you.
Love You, OXXO
Kayley & family

Lindsey said...

Kyle, Christin, and the rest of the gang,

Thank you so much for allowing me to share some time with you this weekend! I loved going to school with you Kyle, and getting to share my big kisses with you all the way from your nose to your toes! I continue to wear my Kylie shirt all the time and say lots of prayers for you every day.

I love you and miss you tons.

Love, Lindsey

Anonymous said...

Hi Kyle -
Just wanted to pop by say hi and tell you that your red hair looks pretty cool. May God bless and watch over you and your family.
xo
Margaret

Anonymous said...

Good Morning Kyle,

Your bunny sounds very cute. I had a bunny when I was little too! Hey I love the hair. :)
You are in our thoughts and prayers each and every day.

Nancy & Taylor Howard

Anonymous said...

Hi Kyle,Happy belated birthday,sounds like you had fun,I wear my Kylie apron all the time,
lunchlady Pam@ HV

Anonymous said...

I check in and read your blog often and am so inspired by your strength and love and spirit. What an incredible family you are! We love you all so very much!

conner said...

Hey Kyle,
Love the red mohawk...did Lynda do that for you?

Congratulations to you and Nicolas! I read in the Bellingham Herald today that you two are honorary coaches this weekend for the boys and girls basketball teams at Squalicum and Sehome. That's quite an honor, for two awesome kids like you!

Have fun,
Cris, Erin, Conner & Colton

Anonymous said...

Hey Kylie!

I love your red hair! My mom finally bought me some blue gel last weekend for my hair. Maybe we could trade colours sometime.

Are you still having fun with your Pokemon cards? How is your collection of American quarters? I am still working on mine. I really like the pictures.

Say hi to Nicolas...and I hope to see you soon! Thinking of you...

Love your cousin, Christopher xoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

carson said...

Hi Kyle,

I hope you will be at school on monday! How are you Nicolas doing? I miss you when are not at school1! I am glad you and me are friends! You are a nice kid kyle. you are the best friend a friend could have!

your friend
Carson

Anonymous said...

Every day I pray for you and your family. You have all been such an inspiration to this community. I truly wish we could bottle your spirit. You are an amazing boy and we all care about you so much. Stay strong Kyle.

Jen said...

I just recently came across your blog Kyle, I just want you to know I will be praying for you and your precious family each day. I will be stopping by here often to smile at you:) Thanks for sharing your story with us all and allowing us to be a small part of your life. You are a brave and loving young man!

Huish Family said...

Our thoughts and prayers are with you!

Love, The Huish Family

malory said...

Hello there!!
Just in the past few months I have noticed way more people checking up on you guys. Keeping in touch, checking as often as possible for any new updates to the blog, and wishing for a moment to be truly uplifted by the emotion filled words on your page. Lots of people surround you all with love and prayers, your lives are radiating right now and shining a whole new light on the world. Some may not know how it makes them feel, me I know I feel totally renewed. Thanks for everything.
Love and Smiles
*Malory

Malory said...

Hey Friends-
Just thinking what a beautiful day it was today. How it got so warm- spring is just around the corner!! I am waiting to see you back at school- Kyle- everyday you are missed more than the day before. You are so loved. We are all rooting for you and can't wait to see your shining face in the cafeteria!!!! I'm saving a seat for you!
Love and Smiles
*Malory

Carson and Tiffany said...

HI Kyle,
Carson and I were just talking about you. He said he wished you were at school because the class misses you too. He really misses you! Me too! Stay strong and keep defying those odds. You are one amazing kiddo. Carson wanted me to tell you that he continues to pray for you every single night. We love you and can't wait to see you at school again. I think the whole school misses you!
Love and prayers,
Tiffany and Carson

Room 25 Friends said...

Hi Kyle,
Your room 25 buddies are sending you lots of love. We miss you! We hope you are able to come in for a visit again real soon.
Your 4th grade friends

Michelle said...

Hi Kyle, Christin, and Nicholas. I think about you often and you are in my thoughts and prayers.

Love you,
Michelle (your favorite gym babysitter :))

Amy said...

Hi Kyle!
I just wanted to let you know that I am very tired today. I stayed up until 1 in the morning playing WOW. That game is pretty darn addicting. I know that there is no way I could compete with you and all your levels. It's sort of like when I got Rock Band and I had to stay up all night until I unlocked all the songs. So what do you think about Jake's cousin going to WSU? Should make for an interesting Apple Cup. Love to your Mom and brother and you!
Amy Terrell

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