We are happy to share with all of you who have been sending your positive thoughts and prayers for Kyle that we had very encouraging news yesterday! Kyle had his second MRI and the tumor has shrunken considerably! In fact, the Oncologist Nurse who first showed us the MRI films couldn't even see the tumor - we thought at first that the tumor was completely gone. After the Radiologists gave us their report, we now know that the tumor is still there, but much, much smaller. (For those of you who are into numbers the original measurements were 4.8, 3.6, 4.0 cm and the new measurements are 2.9 x 2.0 x 2.3 cm) The tumor is about 80% smaller than its original size. Everything else looks normal!!
What does this mean? It means that Kyle is currently symptom free! There is less mass-effect as a result of the decreased size is tumor. The pons has decreased in size. The ventricles are now normal in size and decreased compared to the prior exam. (All of which account for why Kyle feels so great!)
What happens now? Now we continue forward with "cautious optimism". Kyle will continue to take Zarnestra (Kyle's clinical study drug) and will have another MRI in 8 weeks. We ask all of you to continue to send your prayers and positive thoughts that the Zarnestra will kill the rest of those nasty tumor cells!
To celebrate the good news Kyle, Nicolas and their papa are heading to the beach in Florida tonight for a week of sunshine and swimming. Thank you all for your love, support and prayers. We feel blessed by your amazing generosity and kindness.
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Kyle learns to surf!
Thanks Make-A-Wish!
Cola rips it too!
One seriously big valentine for Kyle
Kyle & Nicolas at Disneyland
Chocolate Faces
Kyle, Christin and Nicolas in the snow
Jocelyn & Nicolas at Boulevard Park
Christin, Kyle, Nicolas, Melissa, Linda & Gordon at Disneyland
Kyle had just celebrated his sixth birthday when we discovered he had a rare brain stem tumor (a diffuse intrinsic pontine glioma) on February 9, 2007. For the next two years we lived our lives at warp speed sharing adventures, laughs and smiles as we embraced every moment. Kyle Jacob Roger January 17, 2001 - February 7, 2009.
Best of Western Washington October 2010
He'e Nalu!!
Kyle learns to surf!
Thanks Make-A-Wish!
a video of Kyle's life
Photo Albums!
posting 101
A big thank you to everyone that has posted a message to the blog! Kyle's mom & dad read the new messages to him every day and it makes him so happy to know that so many people are cheering him on.
Wanna post but don't know how? After reading a post that you would like to add your comments to, just click on post link at the bottom, login or create a new account and add your message to Kyle - if others have already posted, just click on the link that shows how many comments have already been logged and follow the same steps as above. Really stumped? Send your comments via email to kimjlund@hotmail.com and Kim will take care of it for you!!!
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THE KYLE ROGER FUND
Donations to THE KYLE ROGER FUND can be made at any Bank of America. You can also donate with your paypal account or any major credit card by clicking the "make a donation" button below. Thank you.
Touching Tribute in the Seattle P-I
Greg Johns wrote a beautiful story about Kyle in Monday's Seattle P-I. We are grateful to Greg for his touching words about Kyle over the last two years.
http://seattlepi.nwsource.com/huskies/399294_kyle09.html?source=mypi
http://seattlepi.nwsource.com/huskies/399294_kyle09.html?source=mypi
Help Your Child Understand Kyle's Cancer
- On February 9, 2007, Kyle was diagnosed with a Diffuse Intrinsic Pontine Glioma, an inoperable tumor in his brainstem. He was enrolled in a clinical trial for a drug called Zarnestra and completed radiation therapy in April 2007. In May 2008 Kyle’s doctor reclassified his tumor as recurring. The Zarnestra was stopped and Kyle was enrolled in a new Clinical Oncology Group trial. Treatment consists of a cocktail of three chemotherapy agents administered in 21-day cycles. Kyle discontinued this treatment 11/19/08.
- Cancer is not contagious.
- It is not anyone's fault when a person gets cancer; doctors do not know what causes it, and the doctors are working hard to better understand childhood cancers all the time.
- Chemotherapy and/or radiation therapy are used to destroy the cancer cells; some of the good cells also get destroyed and therefore there can be side effects such as hair loss, weight gain or loss, fatigue, and lowered resistance to infections.
- Kyle is still the same person he was before he got sick and wants to be treated the same.
- Please encourage your child to share any questions or concerns with you.
Christin's Diary
T-SHIRTS, BUMPER STICKERS & WRISTBANDS for sale!
Looking for a way to support the research of Dr. Jim Olson in honor of Kyle? You can wear a "Kylie shirt" or wristband!
Email kylerogerfund@hotmail.com and you can join us as we continue the battle against pediatric brain cancer.
Adult shirts are $15.00, children's shirts are $10.00. Wristbands and bumper stickers are $3.00 each. Please include your size preference and address.
Cola rips it too!
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KYLE ON KIRO 710 AM
CLICK HERE: http://sea.bonnint.net/2007/0307husky.mp3
KYLE ON KING 5 TV
KYLE IN THE BELLINGHAM HERALD
KYLE & NICOLAS ROCKIN' OUT WITH RECESS MONKEY
EMP CONCERT - WHAT A TURNOUT!
What a show! Details about this successful fundraiser and other upcoming events for Kyle at: www.kylerogerfund.blogspot.com
Video from the event at: www.kylerogervideos.blogspot.com
Love from the Cottage School
One seriously big valentine for Kyle
LULU'S FUNDRAISER - HUGE SUCCESS!
Details about this successful fundraiser and other upcoming events for Kyle at: www.kylerogerfund.blogspot.com
KYLE'S JOURNAL
Stay updated on Kyle's treatment and progress. Read journal entries from Kyle's family at: www.kylerogerjournal.blogspot.com
Other Cancer Resources
Kyle's Family Photos
Kyle & Nicolas at Disneyland
Chocolate Faces
Kyle, Christin and Nicolas in the snow
Jocelyn & Nicolas at Boulevard Park
Christin, Kyle, Nicolas, Melissa, Linda & Gordon at Disneyland
15 comments:
Kyle, Christin, and Jocelyn-
Thanks for posting the update. I am still the happiest teacher on the planet just hearing that the tumor has become so much smaller. I know that Kyle's entire medical team deserves a ton of credit for this result. I also agree with one of Kyle's classmates that "love is really good medicine." Kyle, you are so surrounded with love and good wishes. All of us are going to keep cheering you on everyday!
Soak up that wonderful Florida sunshine and continue to live strong. You are all amazing!
Lots of love-
Mrs. DeJong
Kyle!
We are so excited for your results and hope you have a great time in Florida! We love you and your family so much!
Keep up that wonderful spirit of yours!
Love,
Jamie, Kelli, Mallory and Hannah
Kyle,
Your Aunt Melissa called me last night with your results...what great news!!! I've been wearing my bracelet every day and praying for you all the time. Keep up those positive "healing" thoughts.
I hope you have fun in Florida!
Take Care,
Noel Geary
Wow, Wow, Wow!!! What awesome news. We were at the airport having terrible luck with our flights. The first one was so late that we would have missed our connecting flight. We switched to another airline and then that flight was cancelled!! We were in the middle of all of these grouchy, angry travelers when I got the great news about your brain bump shrinking. I'm pretty sure everyone at the airport thought we were nuts because we were jumping up and down, whoopin and hollerin, and generally making fools of ourselves when they had just cancelled our flight! We are all so proud of you and your family for fighting that brain bump so well. Keep up the good work you tough little cookie!
XOXOXOX
Julie, Paul, Andrea and Shane
P.S. I'll let you know if our trip ever works out!! : )
Ooo Um Gow Ah - Kylie is a rock stah!!!
Kylie - I am so proud of you for going through your treatment with such a good attitude and smile on your face at all times.
I know that you are going to have a great time in Florida. We'll all miss you lots here in Bellingham.
And, like Kim said, You are a rock star!
Love, Anne-Marie & Chris
Kyle and Christin,
WOW...what awesome news. I read this today and it was sunny out! I think that is a sign. I sure hope you have a great time in Florida. Sunshine is a good medicine as well.
Rock on!
Amy, Hayden, Fischer and Shannon
YAAAAAAAAAAAAAAAAAAAAAAAAAY!!!
Great news. I called home from our trip to Kalaloch and heard your message, Jocelyn! We're so happy.
We'll keep praying!
Y'all have fun in Florida!
Love,
The Chute Family
Kyle,
I am sitting hear thinking of you and Nicholas playing in sunny Florida and I find myself just a little jeolous. The weather has been a little rainy, but luckily we have the amazing news of your shrinking bump to keep us all smiling.
I shared the news of your shrinking bump with all of the prayer warriors I know who pray for you diligently. You probably heard their cheers, whoops and hollers all the way in Florida.
Speaking of cheers, I think we played your team today in soccer and they were very tough. I can't imagine how tough you guys must be when you're there! I'll have to look at our schedule and make sure my team practices extra hard before we meet up again.
Please give everyone in Florida a big hug from your friends in room 5! Let Nicholas know I'm glad Spring Break is almost over. A week without his smiles is long enough! Oh, and bump...shrink, shrink, shrink, shrink...
Love,
Mrs. Clark
Hi Kyle!
I just wanted to let you know that you might be feeling an extra power surge tonight while you are sleeping. All my friends at the hospital bought your t-shirts and bracelets, and we are all going to wear them tonight to celebrate your shrinking brain bump! I think the kids at work are going to be confused because all of the nurses are going to look exactly the same!
I hope you are having fun in sunny Florida! I'm expecting you to come down here with beach blonde hair and a tan!
I'm looking forward to seeing you very soon.
Love, Lindsey
Hi Kyle and family,
My name is Matt and I live in Colorado. I am an Air Force pilot currently stationed in Colroado Springs. I have a seven year old son named Andrew who was diagnosed with a pontine glioma just like you Kyle. He was diagnosed right before his 6th birthday. That was 21 months ago. Andrew will turn 8 in July. He has really surprised the doctors. Just like you, Andrew's tumor shrank over 80% after his first MRI, and continued to shrink even more. His last few MRI's have shown the tumor is almost completely gone.
I learned about you Kyle, from one of my best freinds Brent Busby. He is Jordan's Dad who you met at the hospital. He and I used to play football together back in high school, and we became like brothers. He sent me an article from the newspaper about how you got to go to Husky stadium and hang out with the Husky quarterback. That is so cool. Andrew loves football too, and he got to have a similar experience getting to meet a college football team and be their team captain for one of their games. He loved that.
You seem like a really amazing and cool kid. Maybe you and Andrew could meet someday. We may be in Seattle this summer visiting freinds.
Just wanted to tell you to keep fighting. I can already tell just from what I've read about you that you are the kind of person that won't ever give up. I believe you and Andrew can both beat this tumor.
If you or your parents would ever like to stay in touch with another family going through the same thing as you, my e-mail is mattnwendy96@msn.com.
Take care buddy.
Matt
Wow! Wow! Wow!!!
Ooh Um Gow Ah!!
We have to tell you about something really cute that happened - yesterday Benjamin was watching TV and we saw Peep on the Discovery Kids Channel. He said, "Hey! That's the Kylie's got the Powa show!" He still loves to chant about you all the time!
Enjoy the sunshine and warm weather in Florida!
Love,
Scott, Amy, Zachary, Hannah and Benjamin
Hi Kylie,
You did great at soccer today. Good to see you. I had fun playing tag with you. I saw Lindsey when I was in Arizona. She taught me how to play Farkle. Maybe you could play Farkle with me. I am sure you would win.
Hugs,
Andrea
Kyle,
My team played soccer this morning and I have to say I was a little relieved not to be playing your oh-so-tough team again.
I talked to Mrs. DeJong about you just yesterday. She is soooo happy to have you back to school everyday. Seeing you once a week was just not nearly enough for her!
Have you had a chance to play Farkle yet? Shane's mom asked me if I'd played yet. Right now I'm still working on beating your Yahtze score. I figure one thing at a time.
I'm really glad that you're home and hope that things feel a little back to normal. Please give Nicholas the biggest hug for me. I am thinking about all of you all the time.
Love,
Mrs. Clark
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