1.14.2009

Birthday Boy - January 17th!

Happy Birthday Kylie Wylie!

Last Saturday we celebrated Kyle's 8th birthday at Our Kitchen is Your Kitchen with cookie decorating, birthday cake and ice cream and the company of friends and family. Even though Kyle couldn't participate fully, he was in great spirits as he snuck finger licks of cream cheese frosting out of his neighbor's bowl. The kidlets had a stupendous time and went home with a super-duper goodie bag and six cookies they decorated themselves.

Unfortunately, Kyle's situation has deteriorated since our last post. The size of the tumor has caused a great deal of new swelling leading to a variety of symptoms, including a loss of hearing and the use of the right arm. This is compounded by an already growing list of difficulties such as walking and clear speech. Our hope is with the new clinical trial drug that was started on Friday (AZD2171) plus steroids will reduce the swelling and allow Kyle to regain some of his mobility and communication tools. Of course if it was only a matter of will and determination Kyle would regain all of his abilities. His never-give-up attitude remains unhindered. We ask for your continued prayers and good wishes for his recovery.

Today Kyle visited his second grade classmates at King Elementary. It was great to see so many friends and smiling faces! Kyle had been waiting to give all his friends OOO-UM-GOW-AH t-shirts. Then the snow came and winter break started 2 days early, then the flood days last week, but finally today he was able to pass out the shirts (as was his brother Nicolas who gave them to his 4th grade class too!). He also shared a couple new pieces of his various collections (he loves to collect coins, shells, rocks, crystals and snow globes). Getting out of the house was a much needed break in the new routine…big thanks to all the friends who gave Kyle hugs and high fives!

The love and support that we are receiving is bountiful. We are happy to hear messages from those who love Kyle but we aren’t always able to answer the phone or return calls in a timely manner. If you would like to come by for a visit please call first so we can arrange a time that meshes with Kyle’s routine. Thank you for understanding this is a fluid situation and schedules can change quickly. If you would like to help out in anyway (dog walking, grocery shopping, etc) the best way to get in touch is by dropping us a quick note at kylerogerfund@hotmail.com.

43 comments:

haleyl25 said...

Hey there Kylie-Wylie!

It was really a privelege to get to visit with you and your dear mama the other day and get to walk(or sort-of run!) Lulu and Cooper. What a great gift you shared with us from your Grandpa and the Ancient Mew card was really cool. I'm glad you got to visit your class mates - that sounds like a real treat. We just love you so much and love to see your "thumbs up." We are thinking about you and praying for you always,

Happy early Birthday!
Carrie, Jason, Cali, Max & Ava

Tiffany Gutierrez said...

Hi Kyle and Nicolas,

Kyle, it was so great to be able to see you and sneak you a couple of kisses. I truly cherish all these precious moments spent with you. I feel so blessed to know you and your entire family. There are so many people who love you!

The kids in our class were so excited about their new Kylie shirts. Just ask Nicolas! We took some pictures sporting our new look to share with you. I will have to get those printed off.

As always, you are in our thoughts and prayers. I love you lots and lots!

Tiffany

Wendy said...

It made me so happy to hear about Kyle's outing today.
I heard the kiddos were VERY excited to see him!!!!
Mine sure was!
Watching all those OOO-UM-GOW-AH shirts march out the door was ...
POWERFUL!!!
Let me know if the smiley face needs a refill....
I am on it!

HAPPY EARLY BIRTHDAY!!!

Lots of love.....
Wendy, Dan, and Sydney

Amy H said...

Happy Birthday Kyle! Wow, 8 that's a very big deal! :) Ann and Wren are sending you a very big hug! Wren's birthday day was at the end of December so we've been doing birthday celebrating too.

So happy to hear you were at school with all of your buddies! What a great day!

We love you very much and look forward to seeing you sometime soon!

Love, Ann and Wren and their parents xoxo

Jill DeJong said...

Hi Kyle!
Thanks for letting me hang out with you on Monday and Tuesday. I had fun watching you and Kim play WOW. Everytime I see you, you manage to teach me something new!

I hope you feel better and better each day. Have your mama give you a great big birthday hug and a kiss from me.

I love you, Kyle! Happy Birthday!

Mrs. DeJong

Anonymous said...

Happy Birthday Kylie!!! It's awesome that you get to celebrate for a whole week before! That way you get more birthday wishes! I am excited to see you tonight! Love you!

ERIN

Anonymous said...

Happy Birthday Kyle! Wow 8, that is great--What a big guy you are! Your birthday celebrations sound like so much fun. I'm so glad too you got to go visit King elementary and see all of your friends. We think of you and your family every day and wish for you to feel better and better.

Kathy and family

L said...

Kyle,

Pickles and I really enjoyed seeing your big bill and rock collections yesterday! You still have that brightness in your eyes and your fighting spirit. You are awesome!

Leslie, Pickles and Paul

Lunchlady Malory said...

Hey there Nick and Kyle!
Just thought I'd drop a note to say how cool it was to see Kyle at school again yesterday. His friends were sooooo happy to see him he was just swarmed by everyone waiting for their chance to slip him a note. He is quite the fighter isn't he?? You are both just amazing to me. Thumbs up Guys!! Eat your veggies...
Love and Smiles,
*Malory

Anonymous said...

Dear Kyle -
Wishing you a Happy 8th Birthday surrounded by lots of love, laughter, and blessings. I am so glad you got to see all your buddies at school, sound like they were excited to have a special cool Kyle tshirt.

You and my family are in my thoughts and prayers.

God Bless,
Margaret

Anonymous said...

Keeping Kyle and the entire family close in our thoughts and always in our prayers.

Jim (www.icouldbeyourchild.org)

Rich said...

Please know my thoughts and prayers are with Kyle and his family. I pray that the new treatment provides Kyle the relief you are hoping for. I am so glad to read that Kyle visited his classmates. I know what a thrill that must have been for all of them.

Happy Birthday Buddy!!!

God Bless.

Rich ~Angel Matthew's Dad
DIPG Parent
http://www.caringbridge.org/visit/matthewmcgowan

Anonymous said...

Hey Kyle,
We just wanted to let you know we are thinking of you today and wanted to sing Happy Birthday!
"Happy Birthday to you, Happy Birthday to you, Happy Birthday Dear Kyle, Happy Birthday to YOUUUU!
Happy 8th Birthday Kyle! We are sending birthday Hugs and thumbs up to you on your day!

We love you!

Casey, Jim, Kyle and Kaitlyn :)

Anonymous said...

woo hoo!! Isn't it GREAT to be 8? We're sending big Cougar hugs to our favorite Husky on your special day.

Happy Birthday Kyle!

Love to you all,
Cris, Erin, Conner & Colton

tracy c davis said...

Happy Birthday, Kylie! Sending you lots of love from Portland!
xoxoxo
Tracy, Brady, Sage and Skye

Anonymous said...

Happy Birthday Kylie!!! I can't believe that you are already 8 years old! I love you so much!

ERIN

Anonymous said...

Hi Kylie! Happy Happy Birthday! It was great to see you and Nicolas at your baptism yesterday! Will sure had fun watching how excited you were about the Pokeman cards he gave to you and Nicolas! We are thinking of you and our prayers are with you! Thumbs up to you!
Again... Happy Birthday!
Love Rich, Lisa, Richie, Sarah and Will
PS Will is looking forward to playing video games over the computer with you when he gets home from Whistler

Anonymous said...

Nikhil, Neha, Sati and Jim sing...

Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, dear Kylie!!!
HAPPY BIRTHDAY to YOU!!!!

- Much, much love to you from Nikhil and Neha-

haleyl25 said...

Hi Kylie,

Well we haven't seen the sun in such a long time but it came just in time for your big day. We are thinking of you today and hope you have a very special #8!

Happy Birthday, Kylie!
Love, Jason, Carrie, Cali, Max & Ava

Anonymous said...

Kyle,
We all had to wish you a happy happy birthday today. My kids talk about you and Nicholas all the time (remember the fun party in Stanwood?) and WE LOVE YOU!


Happy birthday to you...happy birthday to you... happy birthday kylie wylie ... happy birthday to YOU!
Love
Kristine, Troy, Audrey, Georgia and Max Stultz

Anonymous said...

We both wish you a Happy Birthday. Sending you lots of smiles and hugs.

Nancy and Taylor

Gutierrez Family said...

Hi Kyle,

HAPPY BIRTHDAY KYLE! We love you lots and lots!

Carson, Hailey, Tiffany and Jon

Anonymous said...

Happy Birthday Kyle! Sam came home from school the other day and said, "Wow Kyle is so popular. He's like the most popular dude in school." She said it with a big smile and talked about how great she was to see you and wear your shirt. You brought the sun with you!
love, the Barrett Family

Ella said...

Happy Birthday Blokus Champion!!! I had fun playing that game with you. It was great to see you at Christmas. I hope I can see you again soon. XOXOXOXOXOXO, Ella

Yuan said...

Hello Kyle
I am Ms.Hao.are you feel surprise,I miss you so much.what about you.haha.I have arrived my home, do you know,from Bellingham to my hometown have 15 hours time difference.so Ms Hao is have lunch now.but what are you doing ,I guess kyle have fall sleep .please must leave a dream for Ms Hao.
Have you remember.I have teach you how to make a star.so if you miss Ms Hao,everynight you all can make a small lucky star,so when you finished another 100 stars,Ms Hao will appear again.I excite to meet you again.

Anonymous said...

Hi Kyle,

You don't know me but I sent you a card a week or so ago and told you my husband's name is also Kyle. This is where things get strange...I looked at your website and you have the SAME birthday as my husband too! I don't know what it means both I think you must be a special person to have so much in common with the man I love and married. i just had a birthday on Jan. 7th so this has been a good month for me. I hope you had fun celebrating too. Love, Susan

Chaos and love said...

Hi Kyle! I wanted to come by and tell you to have a happy day! I know you already had a birthday, but can't we celebrate a bit each day?? I work at Happy valley and signed a card for you. I do hope you enjoyed it. I am Ms. Brown, and I work with a 5th grader at HV.

That's so cool you got to visit your friends and hang out.
Peace!
Carrie

Carson said...

Hi Kyle
I mist you today kyle.I hope you can come to school tomorrow! I hope your appointment went well today. We need you at school. I am praying for you every single night. You are a really good friend!
Love Carson

Donna Maria @ Indie Business said...

Your friend Anne-Marie Faiola shared some of your story with me. I'm far far away in body, but my heart is with you as much as it can be as you fight this battle. Through Anne-Marie and many friends like her that you surely must have, you are supported, loved and lifted up in thought and prayer more often than you know. Wishing you much continued love, and mostly peace. A faraway friend named Donna Maria.

Anonymous said...

Nick and Kyle...
It was awesome to see you at school today! I hope you are feeling well enough to come back again tomorrow - the kids really love to see you as much as they can. I really love to see you as much as I can too!!! You guys are the best... I'm lucky to know you and your family. Without you guys in my life- I would be a different person entirely. You have given all around you more than I think you know.
Love and smiles,
*Malory

nmgeary said...

Hi Kyle!

Just wanted to let you know that I am thinking about you, your brother and your mom today. I am wearing my Ooo-ym-gow-ah t-shirt at work with Aunt Issy, and in honor of you, we are going to have some ice cream for a morning snack...I thought you would approve! Stay strong buddy!

Noel

Melissa Wilson said...

Kyle,
I am so proud of you... you are a strong, fearless, incredible boy. Your aunt Issy told me you like the special necklace I bought her for Christmas. :) I was so happy to hear that. You are in my thoughts every day.
Love,
The "other" Melissa

Tiffany and carson said...

Hi Kyle and Nicolas,

Carson and I wanted to tell you how fun it was for us to see all those adorable bunnies. They were seriously cute and so calm. Please tell your friend Campbell thank you for letting you bring them in. What a super nice friend. I think just about everyone in both classes now wants to have their very own.

Carson was so excited to tell me that Kyle let him hold Easter. Thank you Kyle for making Carson's day. He also told me that he wants to have a play date with both you and the bunnies. It made me smile. I am so glad that you both are such good friends. He loves both you and your brother very much. I can totally see why. You are two of the coolest boys we know.

Please tell your grandma it was nice to see her again. I am glad she is able to visit with her fun loving grandsons. She is one lucky lady.

We love you very much.
Tiffany and Carson

megan H said...

Hi kyle
The bunny's are relley cool!
It is cool you get to come to school evrey day at 11:30.thank-you for the Marley and me a dog like no other's! I'm reading Marley and me a dog like no other's for browsing box.your a good friend!
love,
megan
hall

Gutierrez Family said...

Hi Kyle,
Just thinking about you as always. The Gutierrez family is sending you lots of love and we are saying healing prayers for you! Love to you and your family from our family.
Tiffany, Jon, Carson and Hailey

Megan H said...

Hi kyle
I like the Pokemon cards you gave me. I had fun hanging out with you today. You have lots of Webkinz! Was the donut yummy? Thanks for the cookie. It looked like you were really comfy on the couch today.
Love,
Megan
P.S. It was cool that Missa Hoa wrote to you. WOW!

Amy said...

Hi Kyle,
I just wanted to thank you and Gil for turning me on to that crazy video game. Of course, I had to go home and check it out and was up way too late night playing it!

Cheers,
Amy Terrell

PS...I'm sure glad I didn't go look at a bunny. The minute I came home and told Hayden and Fischer about them they wanted one!

Kate R said...

Hello Kylie,
We've never met, but I'm a friend of your Aunt Issy and she loves you so and tells me so much about you, I feel like you're my nephew, too! And I say, you can never have enough Aunts! (Especially one like Melissa.) I've been reading your website and your mother's blog and keeping up with what's happening with you. Stay strong and keep fighting. You're like a super hero to me! I hope you're having a good day today (it's beautiful and sunny here in Seattle today) and Happy (belated) Birthday!

Kate R

Megan H said...

Hi kyle
It was fun seeing you at school today!

Love,
Megan H.

Carson said...

Hi Kyle,
I was glad to see you at school today. I hope that you can come to school tomorrow. I am always thinking about you and praying for you. I am glad your IV thing went well. I know I say this a lot, but I am really glad we are friends!
Love Carson

Anonymous said...

Hi Kyle - this is Ethan, Seth's dad. You know, Seth from Cottage School. I just wanted to let you know that I've been thinking about you a lot, trying to send positive thoughts in your direction. I just sent one. Did you feel it? I'm glad I got to see you and Nicolas at the Bivalve Bash last summer. Do you remember the Mud Run? That was funny. Did you see when that boy got stuck in the mud, and a man had to go out and get him? Seth didn't do the Mud Run, but he did get stuck while exploring the mud flats and I had to get him. We nearly lost his Crocs! Seth misses the Cottage School sometimes. His first year there you were one of the older kids and you were really nice to him when he was nervous because he was new. You are a very sweet and special boy. ~Ethan

Anonymous said...

Hey Kyle!

My name is Megan Killough, I'm an old chemistry student of your dad's and I just wanted to drop in and say how proud I am of you! I have kept up with your progress online and it is amazing how strong and courageous you are. You are truely inspiring. I go to the University of Washington, so I love the hat you're wearing in your picture. Go Huskies! You definitely love the right team. :) Continue to be strong and shine in God's light. You and your family are in my prayers.

~Megan Killough

clockwork said...

Dear Christin,

My heart goes out to you after today's tremendous loss of Kylie following two years of a tumultuous roller coaster ride of hope and despair. I am so very sorry for your loss of such a dear and brave soul. Of course, my sincere and heartfelt condolences also extend to Nicolas and to Jocelyn and to the rest of your family.

My son Christopher, who is about the same age as Kylie, will miss him very much – he will always have such wonderful memories of the times they spent together, and he has spoken of them to me, and those times will no doubt be remembered forever.

Last night, by sheer co-incidence, I checked Kyle’s website as I have done from time to time to learn of any hopeful progress, and I sent you a short note of support, but I can’t find it on any of the blogs or website – I’m not used to blogging. That matters little. Hopefully, this message will come through.

If you didn’t receive last night’s message, and at the risk of being redundant if you did, here is that prior message, and excepting Kylie’s final moments, I hope that you will find my earlier message to be apropos; these comments were and are from my heart:

“Hi Christin, I've been following Kylie's endurance and developments over the past 2 years, as have a number of my friends with whom I have been in contact about Kyle and your funding campaigns and news. I remember him so well 5+ yrs ago as a great and spirited kid; indeed a post-toddler with tons and tons of energy. As well as some pretty great smiles!

Christin, you have incredible stamina and are an incredibly strong and supportive Mom, and your relentless PR work for Kylie has been absolutely beyond remarkable. Kyle is so fortunate to have such a strong and devoted Mom. I don't know what else I can say, other than to mention that he is in my mind frequently, and I do pray for him as well. I understand realistically that it would take a miracle to make his condition disappear. In the meantime, your boundless energy combined with your 'leaving no stone un-turned' positive attitude can be only described as nothing less than wonderful. Kylie could not have been more fortunate than to have been born to a very special Mom, and a loving family. I hope that you are otherwise well. Nicolas too. With thoughts, prayers, and with love, Peter D”

I can’t think of anything to add to that message – please just know that I am thinking of him, of you and all of your close family. Again, Christin, I am so sorry for your loss…..though now may his soul rest in peace.

Peter D