Kyle "Kylie" Roger

Happy 11th Birthday Kyle!

2012-01-16T12:10:00.000-08:00

Help us honor and celebrate Kyle by joining us in

Ice Cream Day!

In honor of Kyle’s birthday we celebrate with Ice Cream Day.Every year on January 17^th we eat ice cream at breakfast, lunch anddinner – snacks too! I am asking you to join us in this celebration. If you doyou will be giving yourself a gift as well, soaking in the pure excitement andjoy of your children as they delight in a true indulgence.

As hard as it is for me to understand, when I have talkedwith moms about allowing ice cream all day on just one day out of the year moreoften then not I hear back, “Well, I’m not sure all day but we will have ascoop at dinner,” as they go over the list of reasons in their heads as to whythey can’t do it. But this year I am asking the question, “WHY?” Why for oneday a year can’t you allow yourself to throw out all the rules? Why for one daycan’t you embrace the joy of not saying no to something that honestly has nodown side? Sure, it might be a bit more fat or sugar depending on the ice creamyou choose, but it’s not crazy-over-the-top. What is really the harm?

The harm lies in the experience you give up. Before westarted ice cream day my boys would ask me, “Can we have a day where we onlyeat ice cream?” and I would laugh and give them a reason it was a silly idea.Then we found Kyle’s cancer. And one day in a counseling appointment with themtheir psychologist asked them to go home and make a list of 10 things theywanted to do together and bring it back the following week. That week they madeup their list. Most of the things on the list were adventures but at the top ofthe list was day they could eat ice cream all day and I couldn’t say no.

We returned to the psychologist with the list in hand. Asthe boys read their list I immediately found myself putting caveats to the ideaof Ice Cream Day. That’s when their psychologist stopped me and asked me why?Why did I think that for a single day that was such an impossible idea? From ahealth perspective she said for one day a year – when they boys atewell-rounded meals every other day – it certainly wouldn’t hurt them. Sheencouraged me to let go of what was holding me back.

So I did. We picked a day on our drive home. We made aspecial trip to the store and bought different ice cream flavors for each meal.We talked about all the ways we could have ice cream – sundaes, milkshakes, icecream cones – the planning was simply joyful. Don’t get me wrong; it was acontinual battle in my head to keep the urge to add a condition of theoccasional carrot, piece of fruit, or some other “good for you” food into theday. But stopped myself. I let the joy of the experience overtake the rationalmothering thoughts in my head.

What I can tell you is of all the days in the two years Kylebattled brain cancer, Ice Cream Day hovers at the top of the list of magicalexperiences. This in a two-year span that we crammed with as many experiencesas we possibly could. We had ice cream for breakfast, and then at lunch Ibrought them ice cream to school. They raced home from the bus rattling off howthey wanted their ice cream snack prepared. And for dinner we ate sundaes withall the topping they could think ask for. You might think that the boys wouldhave been bouncing off the walls or have tummy aches, in spite of all mycertainty that Ice Cream Day would have a down side or negative repercussions,it just didn’t happen. But do you know what did? We made an unforgettablememory. We shared laughs. We were joyful. By giving in on one simple thing fora single day I allowed myself to embrace they miracle of childhood through thedelight of my boys.

So I ask each of you to stop the rational reasons to putlimits on your own Ice Cream Day. Stop and think about if you lost your childwould those reasons have been worth it? Would you have regrets? Maybe we can’traise our kids indulging their whims for fear of regret, but we can pick asingle day to celebrate them. As you do you can help honor the life of a boywho embraced every day, every challenge, every experience with the whole of hisbeing and shared that gift with everyone who knew him.

I love you Kylie. Not a day passes I don’t think of youlaughing at a joke you’re telling, or racing down the hill on your bike with “nohands,” or begging to play a game of Yatzee, or asking me to lay down andcuddle you as you fell asleep. You taught me to live life without fear, to livelife at full speed, and to take a minute or an hour or a day to live lifewithout worrying about all the rules.

On Ice Cream Day we honor and celebrate you.

It's time for the Run of Hope 2011!

2011-08-31T10:02:00.000-07:00

Nicolas and Kyle at a Husky game in 2007

It's time for the Third Annual Run of Hope! Join us as we run in honor of Kyle "Kylie" Roger Sunday, September 25th, in Seattle's Seward Park. This 5k run/3k walk benefits the Pediatric Brain Tumor Research through Seattle Children’s Hospital and Research Institute.

The team, as always, is called “OOO-UM-GOW-AH.” A familiar chant for anyone who supported Kyle during his two-year battle with DIPG. Whether you join the team or make a donation you’ll give hope to the more than 3500 children diagnosed with brain cancer each year. If you aren’t able to make a donation online and would like to instead send a check, send me an email requesting the mailing address.

Thank you for your continued generosity. And thank you for helping me honor Kyle, his infectious smile, his competitive spirit, and his love for life. Together we can show Kyle how much we remember and that we are all better because of it.

To join the team or make a donation click here!

Where Do the Donations Go?

Kyle's doctor, Jim Olson, and his colleagues at the Seattle Children's Research Institute are dedicated to accelerating the discovery of novel treatment for children with brain cancer. They hope to translate these findings into therapeutic protocols and finally replace a standard of care that hasn’t changed in the last 30 years.

The work being done with funds from last year is absolutely spectacular. Dr. Olson's lab made 24 new mouse models of pediatric brain cancer, using tumors derived directly from patients. With these models they can run "mini-clinical trials" to more rapidly learn what to take into human trials. We also share these mice with scientists all over the world with "no strings attached" making cutting edge research available in labs without the capibility or resources to make these mice on their own.

Dr. Olson's research has contributed to the development of Tumor Paint, a fluorescent paint made by the venom of a scorpion, which helps neurosurgeons discern where a tumor begins and where it ends. Being able to see a tumor that ordinarily looks like normal brain tissue enables surgeons to more precisely remove the entire tumor. Revolutionary discoveries like this are making a difference in the lives of children, but more research is needed!

Missing Kyle?

Click the link below to watch a video of Kyle's life...filled with smiles, laughter, adventure, and love. This video was made by Gil Lund.

Kyle Roger Memorial 2/16/2009 from Gil Lund on Vimeo.

Happy Birthday Kylie

2011-01-16T19:35:00.000-08:00

Join us in celebrating today. The tradition of "Ice Cream Day" was started by Nicolas and Kyle when they made a list of things they wanted to do together the spring before Kyle died. At the top of that list was to have a day they could eat ice cream for breakfast, lunch, dinner, and all snacks! They were both over the moon when I said yes. We bought more ice cream than we could possibly eat and mixed and matched flavors and topping for every meal. The memory of that day and the joy it brought all of us will live with me forever. Now there is no better way I can think of the celebrate the life of my amazing boy and the incredible relationship he shared with his brother. The gift I would like to share with you is for you to witness that same joy by treating your children to this simple indulgence. Not only will you be honoring the life of an wonderful boy who fought so hard but you will also honor your own children and all the joy they bring to you.

To my beautiful boy,
I miss you every minute of each day. Your laugh, your smile, your joy was infectious to everyone who knew you and to so many who only knew of you. You continue to inspire me. I will continue to seek out ways to honor your spirit. I love you always.
xoxo, Mama

Check this out!

2010-09-20T10:13:00.000-07:00

Nicolas and I had a great time last night visiting the Q13 studios and watching Jake tape his segment for Q It Up Sports! If you missed it here is the video...

If you would like to join us there is no better day than today! Last day for online registration is September 28th and you can register for team "OOO-UM-GOW-AH" at www.runofhopeseattle.org. If you can't join us on October 3rd at Seward Park, you can still help by making a donation at www.firstgiving.com/kyleroger.

Thank you for your continued support!

Christin

Second Annual Run of Hope!

2010-08-18T18:47:00.000-07:00

Kyle with his friend Husky QB Jake Locker

Join team "OOO-UM-GOW-AH" as we run in honor of Kyle "Kylie" Roger at the second annual Run of Hope, Sunday, October 3rd, in Seattle's Seward Park.

A familiar chant for those close to Kyle, "OOO-UM-GOW-AH" was a mantra Kyle drew strength from during his two-year battle with DIPG. Visit www.firstgiving.com/kyleroger. Whether you join the team or make a donation you’ll give hope to the more than 3500 children diagnosed with brain cancer each year.

The Run of Hope is a 5k run and 3k walk benefiting Pediatric Brain Tumor Research through Seattle Children’s Hospital. Kyle's doctor, Jim Olson, and his colleagues are dedicated to accelerating the discovery of novel treatment for children with brain cancer. They hope to translate these findings into therapeutic protocols and finally replace a standard of care that hasn’t changed in the last 30 years.

Funds already raised for this research have contributed to the development of Tumor Paint, a fluorescent paint made by the venom of a scorpion, which helps neurosurgeons discern where a tumor begins and where it ends. Being able to see a tumor that ordinarily looks like normal brain tissue enables surgeons to more precisely remove the entire tumor. Revolutionary discoveries like this are making a difference in the lives of children, but more research is needed!

Thank you for your continued generosity. And thank you for continuing to honor Kyle. Everyday I miss his infectious smile, his competitive spirit, and his love for life.

Join Our Team!

Meet Kyle through this video tribute to his life...filled with smiles, laughter, adventure, and love.

Kyle Roger Memorial 2/16/2009 from Gil Lund on Vimeo.

January 17th - Ice Cream Day!

2010-01-10T20:32:00.000-08:00

Are you looking for a way to celebrate

Kyle's amazing life on his birthday?

January 17th would have been Kyle's 9th birthday. Nicolas and I have been talking about what we want to do on Kyle's day and the obvious answer is ICE CREAM DAY!

Some of you may remember a list that Nicolas and Kyle made of things they wanted to do together. We were able to turn many of those wishes into memories, including their wish to eat ice cream all day - breakfast, lunch, and dinner! So for us, January 17th from this year forward, is Ice Cream Day. We invite each of you, grown-up or kiddo, to make January 17th Ice Cream Day too!

We'd love to know you are joining in the fun so please write a quick comment letting us know about your own Ice Cream Day and a favorite memory with Kyle. I can't think of a better way to honor Kyle than to generate awareness of pediatric brain cancer and how much needs to be done to find a cure and to that end I'd like to piggyback on a recent Facebook experiment...on Sunday post your favorite ice cream flavor as your status update and ask your friends to do the same. When people ask why you have a flavor in your status you can proudly say "Because today I am eating ice cream to celebrate a little boy who loved his life, loved his family, loved his friends, and loved when his mom let him eat ice cream all day."

January 17th - Ice Cream Day!

Happy Birthday Kylie Wylie.

We love you.

xoxo

Kyle blows out the candles at his 4th birthday party.

Join us for the Run of Hope!

2009-09-21T08:42:00.000-07:00

Our Lucky Dawg with Husky QB Jake Locker

Join us as we run in honor of Kyle "Kylie" Roger at the inaugural Run of Hope, Sunday, October 18th, in Seattle's Seward Park.

The Run of Hope is a 5k run and 3k walk benefiting the Pediatric Brain Tumor Research Fund through Seattle Children’s Hospital. Kyle's doctor, Jim Olson, and his colleagues are dedicated to accelerating the discovery of novel treatment for children with brain cancer. They hope to translate these findings into therapeutic protocols and finally replace a standard of care that hasn’t changed in the last 30 years.

The team running in memory of Kyle is called “OOO-UM-GOW-AH.” A familiar chant for anyone who supported Kyle during his two-year battle with DIPG. Whether you join the team or make a donation you’ll give hope to the more than 3500 children diagnosed with brain cancer each year.

And between now and October 18^th all donations made to the Kyle Roger Fund will also be contributed to the “OOO-UM-GOW-AH” team. If you aren’t able to make a donation online and would like to instead send a check, send me an email requesting the mailing address.

To join the team click here!

Video of Kyle's life...filled with smiles, laughter, adventure, and love.

Kyle Roger Memorial 2/16/2009 from Gil Lund on Vimeo.

Happy Birthday Nicolas!

2009-05-15T11:05:00.000-07:00

Nicolas finds the paver that the

Faris's had made for him at Disneyland.

Nicolas turns 10 on Monday, May 18th! It's hard to believe he is now in double digits. We are so proud of him! He has demonstrated incredible strength and courage, as well as compassion, over the last two and a half years. He's a remarkable young man and inspires us to keep looking forward.

It's hard to believe it's been 3 months since I've posted on Kyle's blog. We are trying to decide the best way to make the site work for us in this new chapter of our journey. It will take some time to re-work things but please keep stopping by to check on our progress. We are tossing around ideas to honor Kyle's memory, ways to support things he cared about as well as Dr. Olson's glioma research.

Thank you again to everyone who has been supporting us over the last 2 years and continues to support us now. Your cards, emails, blog posts, prayers and good wishes mean so much to us. Even with all the sorrow and loss there are still things to feel lucky about and your support is at the top of that list.

It's a Beautiful Day...

2009-02-18T13:28:00.000-08:00

We shared a beautiful day remembering Kylie. Surrounded by people who Kyle had touched in some way, his collections, his artwork, and his endless spirit. If you weren't able to join us we have attached the video tribute put together by Gil Lund. It is a snapshot of a life that overflowed with smiles, laughter, adventure, and love.

Kyle Roger Memorial 2/16/2009 from Gil Lund on Vimeo.

Thank you to everyone who has prayed for us, sent us good thoughts and wishes, brought us dinners, walked our dogs, ran to the grocery store, shuttled to and from Starbucks, and so much more. We are sincerely grateful.

In memory of Kyle

2009-02-10T23:24:00.000-08:00

Kyle and Dr. Olson

In lieu of flowers please consider making a donation in Kyle's name to the research lab of his doctor and friend, Dr. Jim Olson.

Dr. Olson cares for children with brain cancers at Seattle Children's Hospital but spends the majority of working hours in his lab, at the Fred Hutchinson Cancer Research Center, looking for ways to fight this horrific disease. If you would like to make a donation to Dr. Olson's lab in memory of Kyle we would be honored.

Here are two ways to ensure donations are directed to Jim in memory of Kyle:

Send a check made out to Children's Hospital to:

Erik Johnson, in memory of Kyle

1916 South Colby Court

Bellingham WA 98229

Erik Johnson, one of Kyle's dearest friends, will deliver donations to Seattle Children's and ensure they are directed to Dr. Olson's lab. Seattle Children's will send a receipt to the address on the check for all donations over $10. Erik will also share the news of each donation with Kyle's family.

You can also donate online at https://secure.seattlechildrens.org

Be sure to write "Dr. Jim Olson's Lab - Pediatric Brain Tumor Research in memory of Kyle Roger" in the box marked other under direct your donation.

Thank you for honoring Kyle's memory.

2009-02-07T10:57:00.000-08:00

Kyle Jacob Roger

January 17, 2001 - February 7, 2009

Kyle passed away peacefully at home surrounded and loved by his family.

Waterbugs and Dragonflies

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you think she is going?" Up, up, up it slowly went....Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...

"That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea". The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise", they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...

"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into its wonderful new world of sun and air.......

Rough Night

2009-02-06T10:21:00.001-08:00

"Just try and catch me!" Kyle challenges Jake

in a game during a break on one of our trips to Children's

Since our last post Kyle has remained relatively stable. He has found ways to communicate with us through his own variation of sign language and spelling out words while we answer writing white boards. We have had fun visits with family and friends, taking walks on the unusually warm and sunny days of winter, and watching Kyle's WOW character (Kyliewylie) level up nearing 40. Kyle loves to play Shut the Box which his friend Andrea gave him for his birthday. And his has enjoyed playing games with many of his visitors, including a great night playing countless games of Farkle with Erin (his long time babysitter) and her friend Seth.

Last Saturday night Kyle was the honorary coach for the Squallicum High School boys varsity basketball team. He met with the players in the locker room before the game, shared high-fives with the players as they checked in and out of the game, and shot a couple baskets on the shoulders of players (with a little help from the a few other teammates). There was even a rousing cheer of "OOO-UM-GOW-AH Kylie's got the POWA!" It was an exciting night that made us all feel great.

Last night, however, we hit a road bump. Although we had a feeding tube placed for Kyle on Wednesday (for fluids and also to help him feel full after weeks of near constant requests for yogurt), Kyle was eating a little oatmeal, one of his new favorites when it is loaded up with brown sugar. He aspirated some of the oatmeal into his lungs and we took a ride to St. Joe's. Kyle was able to stabilize without any invasive measures. He has fluid in his lungs and we will watch him for any sign of pneumonia to set in over the next few days, but we were able to go home together. The meds are helping to keep his breathing near normal and he is able to rest and snuggle in the room we have plastered with all the cards and posters from his friends, classmates and supporters.

We continue to marvel at Kyle's resolve. His strength in the face of this new struggle is an inspiration that today day a bit closer to manageable for all of us. Thank you for your thoughts and prayers for Kyle and the miracle we all desire.

Living Each Day

2009-01-28T07:37:00.000-08:00

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.

Birthday Boy - January 17th!

2009-01-14T21:33:00.000-08:00

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.

Very Merry

2008-12-26T20:47:00.000-08:00

It's hard to believe that we have had snow on the ground for more than 2 weeks now! Maybe the best part of the snow, for me, is how it feels like a soft, graceful blanket that forces everyone to slow down. Quite an accomplishment, even for a force of nature, during the holidays! We have been enjoying some sledding, especially Kyle who blazes down the hill in a flash but then enjoys being pulled back up. Over the past few weeks it has become increasingly more difficult for Kyle to walk on his own and when you add a little ice and snow to the mix, a ride in a sled is a welcome event.

Even with is new challenges, Kyle has talked endlessly about going skiing at Mt. Baker. A few weeks ago I received a call inviting us for a day of skiing, or at least a couple of runs, even though the mountain hadn't had enough snow to open. We planned a day to head up with Gil, Kim, and Campbell Lund, but of course the snow started to fall about 36 hours before our outing. We were determined to go anyway, but when we woke up on that Monday morning it was a balmy 4 degrees on the hill...and that was before wind chill! So we scrapped our plans and hoped we could find another opportunity for the adventure. We woke up on December 23rd and decided that was the day.... The video below tells the rest:

Kylie At Mt Baker 12/23/2008 from Gil Lund on Vimeo.

The boys traveled to Seattle with their dad and Cara on the 24th to celebrate with Cara's family. The highlight from Santa was a new hamster, Freddie, a 7 week old, orange and white furry friend. I picked up the boys on Christmas morning and we went to my parent's house. Kyle was excited to find a rock polisher under the tree and Nicolas was spoiled by his grammie and grampie with his very own iPod. Christmas night my extended family came for dinner at my parents (the boys call it the "big Christmas party"). Everyone made their way despite the bad roads and threat of more snow. It was a wonderful night.

We were greeted by crates and boxes of mail when we returned home. Red Robin corporation has sent us cards from restaurants across the country, we have received cards from Texas, Arkansas, Deleware, Germany, Hong Kong, Canada; from classes of school children in California, Arizona, and all over Washington; from Mayors and Senators, from grandparents of people we know and people we have never met. The cards are filled with good wishes and prayers and some funny jokes, too! Thank you to everyone who took the time to drop a card in the mail to Nicolas and Kyle. We feel surrounded by love and support and are thankful for the kindness.

We hope you enjoy the last days of 2008. It has been a year full of exciting adventures as well as new struggles. We are grateful for each moment we share and each memory we make. Each day is a gift, each smile and laugh is a joy, each morning kiss is a cause for hope.

2008-12-19T11:28:00.000-08:00

We've been busy the last few weeks. Kyle and Nicolas' grandparents came from Quebec for a visit, we celebrated Thanksgiving, cut down Christmas trees (we loved the new tree farm we found thanks to our new friends at the Kelly Road Tree Farm), dressed up the house inside and out with lights and decorations, and that is just the start of the list!

Our friends, Dan and Wendy, arranged for the boys to spend an amazing day at a Seahawks game. Dan's dad Tracy took great care of us, giving Kyle a shoulder ride everywhere we went and making sure the boys felt spoiled. Dan's uncle made it possible for us to go out on the field before the game where the boys were able to pet the real hawk, take a photo with the mascot hawk, and Kyle even caught a threw a pass to one of the players! Then we rode in the press elevator and found our seats in a beautiful suite. Dan's uncle Todd had left goodie bags on the boys' seats with bright green gloves, scarves, #12 towel, and jerseys (which of course they wore to school the next day). While the Hawks may have lost the game in the last 3 minutes, we had lots to cheer about, and not just the buffet with bowls of gummy bears!

Nicolas and Kyle chill out in the Seahawks' suite!

Last Friday night we had well wishers come to the house and fill the remaining outside trees and shrubs with lights. It is now truly "Griswald" as I can't turn on the tv's or light the Christmas trees inside while all the lights and inflatable decorations are lit outside without blowing a fuse! When Nicolas saw the house for the first time he shouted, "Oh my gosh, my mom turned our yard into a party!" That is exactly the look I was hoping for.

The weekend turned to winter when it started to snow. There was probably only half an inch on the ground and we were out trying to sled. By Sunday the neighborhood was a winter wonderland! We had to find a way to make it to Santa Brunch (I'm not keen on driving in the snow) and our friend Paul offered to be our taxi driver. Kyle had been looking forward to brunch for a month. He and his best friend Campbell were sitting at their own table, no grown-ups! Campbell's dad, Gil, captured the day for us but if you decide to watch, grab a tissue box, the video is wonderful...

Santa Brunch 2008 from Gil Lund on Vimeo.

If you haven't seen the Bellingham Herald today, click here to read a story highlighting the holiday spirit being sent our way. The story details the out pouring of holiday wishes filling our mailbox. Each day we drive straight to the mailbox on our way home from school to see if there is any mail for Kyle and Nicolas. When a few of the people I am friends with through work heard how they like receiving cards they put the word out. Now we read notes of encouragement, hope and well wishes from across the city, state, even the Canadian border!

The snow has given us an early start to winter break, we are looking forward to all the joys of the holidays. Thank you for your continued prayers, good wishes, and support. Thank you to everyone who has brought us a meal, sent a card, written a comment or sent an email. The spirit of Christmas has filled our home, we hope it has filled yours too.

taking a break

2008-11-19T21:36:00.000-08:00

Kyle's MRI showed that his tumor has not grown. But after nearly 2 years of chemotherapy we have decided to take a vacation from chemo treatment and give Kyle's immune system a chance to rebuild. It is our hope that the chemo cocktail from the last several months has thwarted any further tumor growth. That being the case we want to give Kyle's immune cells a chance to regain strength to fight his tumor and his nerves a chance to repair themselves from the damage caused by pressure from the tumor.

Most of all we want to give Kyle a break from medicine for a bit. No more yucky tasting shot glasses full of chemo and cranberry juice. No more zolphran every 8 hours to keep his upset tummy at bay. We are going to let Kyle enjoy being Kyle and we are going to enjoy that too.

Thanks for your continued support and prayers....Please keep them coming.

It's that time again

2008-11-17T21:01:00.000-08:00

Kyle and Campbell hug on horseback at

Progressive Riding Academy horse camp, July 2007.

Wednesday, November 19th, is Kyle's next MRI. We have a full day at Children's with the MRI at 11:45, a visit with neurosurgery to adjust his shunt valve after exposure to the MRI machine at 2:00, and his appointment with Dr. Olson at 3:45. If things appear stable his next round of chemo starts after that.

If you have a 'Kylie' shirt please wear it Wednesday. Even though we won't see them on friends at King Elementary, or Happy Valley, or on his supporters all over Bellingham and beyond, Kyle will be uplifted knowing people are thinking of him and cheering him on. If you don't have a 'Kylie' shirt yet but would like one send an email to us at kylerogerfund@hotmail.com and we will be happy to get it ordered for you.

Any good thoughts or prayers you can send Kyle's way we will take them with open hearts and tremendous gratitude.

OOO-UM GOW-AH

Kylie's got the POWA

A trip down memory lane...

2008-11-12T20:06:00.001-08:00

September, 2007,

Kyle was the "Lucky Dawg" when the Huskies played Ohio State

As I was looking through the archives of this site I found myself reading the first post about Kyle. I realized many new friends and supporters from his new school and elsewhere didn't have the opportunity to know Kyle before we learned about his "brain bump." I hope reading this first post helps illustrate how Kyle continues to defy statistics in his fight against DIPG. If you are new to Kyle's story you can catch up on his journey through the links to archived posts in the column on the right side of this page. From his first days of radiation, to his Make-a-Wish trip, through first grade and now into second, Kyle's determination and joy for life inspires me every day. I hope as you learn about him you will be inspired too.

February, 2007....

Those of us who have the pleasure of knowing Kyle, already know without a doubt what an amazing kid he is. But for those of you who have not yet had the privilege of meeting Mr. Kylie-Wylie, here's a little info:

First off, Kyle attends two schools! He spends his mornings at the Cottage School with his teachers Amy and Allison. He then makes his way to Afternoon Kindergarten at Happy Valley Elementary with Mrs. DeJong. Kyle has many friends at both schools. He is as smart as a whip and might have a future in banking, given that one of his favorite pastimes is counting money!

Kyle is an excellent athlete. If he decides not to become a banker, we expect to see him on ESPN in the X Games or in a Husky Football uniform. He loves to ride horses, swim, ski, ride his BMX bike, play soccer and basketball. When not on the field, slopes, court, or in the pool, Kyle can be found playing games - especially monopoly. He has 3 different monopoly games - regular, Star Wars, and Spongebob! He also enjoys Monkey Snowboard on the Wii.

Other attributes that make Kylie special: He loves ice cream sundaes with extra cherries. He likes to make up songs. He likes to sneak into his mama's bed in the middle of the night. And he loves to paint his toenails. Right now they are bright pink!

Kyle is such an outstanding kid and has made an marked impact on so many people in our community; please feel free to refer others to this blog. Only good can come from having more people cheering Kyle on! Ooo-um-gow-ah! Kylie's got the powa!

A lesson in perseverance on a drizzly Thursday morning

2008-10-30T12:17:00.000-07:00

Recently Kyle participated in the first annual Globe Trot at his school, a run to raise funds for school supplies for low income children. I joined his mom, grandma, hundreds of students, parents and other interested spectators on a less than pleasant October morning to witness this event. The students’ enthusiasm was apparent, but most impressive of all was the determination and perseverance Kyle demonstrated. As you have read, seen or heard, Kyle has had increasing struggles with his balance. This has made most of his favorite activities a challenge and, at times, dangerous. He, nonetheless, approaches each of these activities, not with reluctance, but with vigor, only suppressed by watchful adults around him. This run was no exception. Despite my cautionary words, “Just walk, don’t run” and despite many falls, Kyle determinedly ran, picking himself up after each fall with what seemed even greater determination to reach his goal.

Kyle teaches me that we must persevere, despite our falls.

To the ever-growing community of caring people who support Kyle and our family, please pray this prayer with me: “Help us dwell in hope. Help us persevere. Let Kyle be a living, breathing, running, jumping, singing, laughing and dancing example of God’s power, grace and love.”

Jocelyn

Sweet Ride!

2008-09-24T21:18:00.000-07:00

How do you say thank you for a gift that is more than just a bike, it is a chance for Kyle to get to do something he loves and a chance for his dad and I to share his joy. Okay, so it isn't always joy, especially when Kyle decides to rest his feet on the bar of the bike and relax when we are going up to the top of the hill in the neighborhood, but hearing him yell, "go faster, go faster!" as we coast back down makes it all worth it!

So this is a HUGE thank you to the gang and Jack's Bicycle, Tony Carter and crew at Northwest Honda, and the Hall family. Your generosity is appreciated far beyond what we can express in a simple blog post. And thank you to Samantha Faris for researching tandems bikes that would work for us and working with everyone involved to make this a reality for us. We have enjoyed in for hours already and are sure to share many cycling adventures together.

Kyle has recovered extremely well from his surgery. He was ready to head back to school on Monday and (even though I wasn't sure he was really ready for a full day) made it all day Monday and each day after. He shared his stitches with his classmates and let, those who wished, trace the line of the "crazy straw" from the valve on the top of his head until in vanishes as is reaches his collar bone. The kids were kind and asked thoughtful questions, but mostly just wanted to make sure that it didn't hurt and that Kyle was feeling better. It is amazing to see Kyle's resilient spirit shine as he works to overcome the obstacles he faces every day.

On a somber note, I want to express my sympathy for our dear friends the Adams. Their beautiful daughter Mara passed away Monday. We came to know Mara and her mom, Heather, during our trips to Children's. I have found comfort sharing stories with Heather. This is a very small club we find ourselves in and being able to talk with another mom who can truly relate to our struggles has been a gift. If you have a moment please think of them and send prayers and good thoughts their way. If you want to learn about Mara and her family or send them a message please visit her website, www.maraadams.com.

On our way home!

2008-09-17T13:48:00.000-07:00

Kyle remains true to form. Yesterday, just a day after neurosurgery, Kyle had recovered enough to be released from Seattle Children's! But since he has a check-up with Dr. Olson this afternoon (Wednesday) and then starts his next round of the clinical trial chemo, we opted to stay at "grammie and grampie's" for a night.

After chemo we are hitting the road back to Bellingham because Kyle is anxious to get home! He is feeling pretty good today although he is sore from the surgery and still a bit wobbly when he walks around. He spent the morning painting with his grammie. Then took a good, long nap after a late second breakfast. He has really enjoyed reading the notes that have been posted to his blog and is hoping to find some cards in the mailbox when he gets home. And I think he is also looking forward to playing Webkinz on the computer...the internet connection at grammie's house isn't fast enough for many of the games! He misses his dogs too!

We still aren't sure how long it will be before Kyle is ready to head back to school, but I am sure that he will be pushing the issue after the weekend!

Thanks for checking in and if you have time to write a note I know that Kyle appreciates it.

Kyle's feeling a lot less pressure!

2008-09-15T11:29:00.000-07:00

Kyle and his aunt "Issy" chill out after his surgery today

As many of you already know, Kyle underwent surgery this morning to have a shunt placed as a way to relieve brain fluid build-up. We woke up early to leave Bellingham by 5AM and arrived at Children's in Seattle for our 6:45AM check-in. By 7:45AM Kyle was walking back to surgery with the anaesthesiologist. What a brave boy to kiss his dad and I a "see you later" and walk out the door and down the hall without us.

We waited about 2 hours for our pager to ring telling us he was finished and to head back to the surgery center. We met with Dr. Avellino, the neurosurgeon who placed his shunt. We were happy to hear that everything went well. Dr. Avellino said "He must be very good at compensating for what is going on!" He then explained that the pressure in his head was very high, measuring 48, and normal pressure is about 7 to 9! He was surprised that he wasn't having frequent headaches and that he was able to ride his bike yesterday. I wanted to tell him that anyone who knows Kyle wouldn't be surprised.

Right now we are waiting for him to come out of recovery. After he wakes up he'll have a quick CT scan to make sure everything looks good, then the nurse will wheel him up to us in his room. It seems like the day should be over and it is only 11:30AM! Kyle and I will stay here overnight and maybe for a second night. He'll see Dr. Olson on Wednesday and start the next round of chemo.

Thanks for all your good thoughts and prayers this morning, I have no doubt that they help Kyle put on the brave face he wears so proudly.

First Day of school....

2008-09-03T10:43:00.000-07:00

Another milestone in the journey we are on....Kyle started second grade yesterday! They boys are going to a new school this year, Wade King Elementary. The school was built last year and the boundaries for all the elementary schools were re-drawn. It is exciting to be in a new place, but Happy Valley had been so wonderful for the boys and I know they were a little sad yesterday to not see all the familiar surroundings.

Last week Kyle had an MRI and it shows that the tumor is still relatively stable. But with that said, he is showing more symptoms than he did at the start of summer. We have decided to have a shunt placed to help drain the excess brain fluid. His ventricles (think of them as the overflow tanks for brain fluid) are large, especially when compared to this time last year. Now they are pressing on the surrounding brain tissue and causing edema. This could be the cause of his increasing symptoms. Our hope is that by draining the brain fluid and decreasing the edema around the ventricles some of the symptoms that have developed will be relieved. If that is what happens we will stick with our current treatment.

The biggest change for Kyle is his balance. He is unstable enough that he isn't able to ride his bike anymore. Anyone who knows Kyle knows this is a big blow. Kyle lived on his bike. We are currently looking for a tandem bike that we can ride with him on the trails around Bellingham. I have seen a few where the backseat is lower and easy for a kid to ride with an adult. Of course it is an expensive proposition, so if anyone has a connection to a bike shop or manufacturer and might be able to help us find a bike that is good quality but at a decent price we would be very grateful. Please send us an email at kylerogerfund@hotmail.com if you think you can help.

Thanks for checking in with us. It makes Kyle very happy to see posts from his friends and supporters.

Where has the summer gone?

2008-08-24T21:50:00.000-07:00

Wow! I can't believe that it is the last week of summer vacation and the boys will be starting school again. But I have no complaints as this has been a truly amazing time for us. We have had many great experiences together. The boys were able to travel to Hawaii with my sister and their grandparents, travel to Quebec to see their dad's family, take a camping trip to Lopez Island, spend 3 days sailing in the Gulf Islands, swim at the pool, spend a week at horse camp, and play with their friends. It makes me tired just to write it all down!

Kyle has been able to maintain this crazy pace even while continuing his chemo. He is so tough. When he gets frustrated that he isn't performing athletically as well as he would like I try to remind him that most people who are taking a single chemo, let alone 3 at a time, are too tired to even try. Yet here he is, riding horses, swimming in the pool, riding his scooter. Sure he struggles more now than before, but he is relentless with his effort. He competitive spirit just doesn't know the meaning of the word quit. And his brother is just as amazing. He is kind and patient with Kyle. He looks out for him when they are playing with their friends. He encourages him when he gets frustrated. He goes to sleep in my bed with him because Kyle doesn't want to sleep alone. I couldn't be more proud.

We are heading to Children's again this Wednesday for yet another MRI. If the MRI is still showing Kyle's tumor as stable he will begin the next round of chemo Wednesday afternoon. Please keep Kyle in your prayers. Each of these MRI's seems more important yet more uncertain as we continue this journey.

I would also like to ask that you take a moment to think positive thoughts for Mara Adams as her parents find themselves at a crossroad in her battle with DIPG. Heather, Mara's mom, has been a wonderful friend since I met her this winter. It is a blessing to have someone to talk with who can really understand how crazy this whole mess really is. We are continually faced with choices that no parent ever wants to have to make, and Adam's are facing one more of those moments.

The meaning of friendship

2008-07-29T08:57:00.000-07:00

Erik and Kyle drop off donations at Seattle Children's Hospital

Read Erik's donation request letter

As the school year was winding down our lives were crazy researching new treatment options for Kyle. That's when Kyle's friend, Erik Johnson, , decided he needed to help. He wrote a touching letter asking forfor donations to Seattle Children's Hospital for brain bump research. He told his mom he wanted to raise $10,000! Although his mom tried to temper his lofty goal to $1,000, Erik couldn't be swayed. At the end of one week he had raised over $1,400!

Erik joined us on our next trip to Children's for Kyle's check-up where he and Kyle presented the money to Dr. Olson and the hospital's donation administrators. It was the most fun we'd had at a check-up! Erik and Kyle were cracking everyone up.

And Erik isn't satisfied yet! He is still going for the $10,000 mark and I am asking for your help. Read Erik's letter and forward it to anyone and everyone you know. Donations are directed to Dr. Olson's research through Children's. Children's will send a receipt for any donations greater than $10 (the receipts are mailed to the address on the check unless another address is provided).

If you are interested in making a donation please send a check made out to "Children's Hospital" with "brain tumor research" in the memo section to:

Erik Johnson, 1916 South Colby Court, Bellingham, WA 98229

For updates on Erik's fundraising progress you can email his mom, Stephanie, at stephbrianerikcole@yahoo.com.

Treatment for DIPG has not improved or changed in more than 30 years. Donations made to Dr. Olson will help him find a way to improve the prognosis for kids with DIPG and other pediatric brain cancers. Government budget cuts are severely affecting the National Cancer Institute's ability to fund new research. This was crystalized for me when Seattle Children's was dropped from the Pediatric Brain Tumor Consortium. While Dr. Olson and his colleagues are hopeful Children's will be reinstated as a self-funded institution, it is a tremendous blow for Northwest kids with brain cancer. Kyle and others will now have to travel to San Francisco or Chicago for inclusion in PBTC clinical trials. For families already feeling financial constrains of medical bills, this is a quite a blow. Not to mention the emotional toll on kids who may have spend their remaining months away from home, family, and friends.

Thanks for your continued support. Your donations to Kyle's fund have enabled us to continue with treatment with less concern for what our insurance with cover. It is a gift to Kyle's emotional and physical well being. Thank you.

Good News....

2008-07-17T00:04:00.000-07:00

After a long day at Seattle Children's watching Kyle lay motionless for his MRI, get poked for his i.v. (which is used for MRI contrast, a blood draw, and one of three chemos), swallow some pretty big pills, go through his paces for a clinic neuro exam, and drink chemo meds that taste beyond yucky, we can finally stop to catch our breath. Kyle's MRI showed his tumor is stable since beginning his new "chemo cocktail" and we feel truly blessed.

More tomorrow, but it is time for some sleep... Thank you for all the prayers and good thoughts today. The positive energy gives us strength....

Send Good Thoughts Today...

2008-07-16T00:10:00.000-07:00

Today's a big day for us. Kyle has his first MRI since starting his new chemo protocol 6 weeks ago. If all goes as hoped he will start the third course of chemo after the MRI results are in and we start the cycle all over.

We have been very busy since our last post as summer is in full swing. We started things off with a fantastic trip to Lake Chelan with the Davis'. Kyle had been begging our friend Julie to take him wake boarding for months and so we went east of the mountains in search of the sun with the Davis' boat in tow! Kyle braved the very cold water and got up on the board two days in a row! Since then the weather has been amazing in Bellingham and the boys have spent an enormous amount of time at the pool. The boys and I just returned from a spontaneous trip to Kauai with my parents and sister...that is a hard place for us to leave! I will be posting photos and details of the trip in the next couple of days.

But for today, please help us by thinking good thoughts for Kyle. He loves to hear from all of you so don't be strangers! Send Kyle a message if you have a chance, it really makes him (and all of us) smile.

xoxo

It's time for something new....

2008-06-13T00:25:00.000-07:00

new photo albums

I have been trying to write this update for the last 3 weeks. Now so much time has passed it is hard to know where to start. I have put together several post, starting with where we are at with Kyle’s treatment, to add individually.

Kyle and the whole crew made the trip to Seattle for an MRI on May 14th. Kyle, again, did an amazing job of lying perfectly still for 25 minutes for the MRI. There is a telescope set up so he can look at me sitting across the room and I send him messages with our secret sign language. I am sure that the folks running the machine find it quite amusing as I make gestures to Kyle that only he understands.

After meeting with Dr. Olson we learned that Kyle’s brain bump is still growing, although slowly relative to most. Kyle’s dad and I decided, in conjunction with Dr. Olson, it was time to find a new way to try and keep the brain bump from getting any bigger. We headed back to Bellingham with heavy hearts and many things to research. But before we left, Dr. Olson, as usual, had a simple way of reminding us what is most important, he hugged each of us and said, "Go home and have fun with your boys."

While enjoying each day, Jocelyn and I worked with Dr. Olson to choose Kyle’s next course of treatment. We considered many options currently in clinical trial and some that aren't. The world of clinical trials is a maze of red tape and bureaucratic rules, which actually limit our choices. But after much deliberation and frustration we started Kyle on a “cocktail” of chemotherapy drugs. Each drug works on the tumor in a different way so our hope is using a combination will enable them to go after the tumor on three fronts at the same time inhibiting the tumor’s ability to work around the treatment. (For anyone interested in more specific information on his treatment, the trial number is ADVL0414.)

Kyle started his first course on Monday, June 2nd. His friend Campbell came with us to Children's for his first day of treatment, making the trip there and back a lot more fun. And I can't forget to share... Kyle is extremely proud he has learned to swallow pills! It sure makes things easier when we don’t have to find a way to mask the taste of one more thing that Kyle says tastes “disgusting!”

Kyle finished his first 5 days of chemo like a champ! He gets a couple weeks to rest before we start all over again...

A quick side note.... the Friday before starting the new chemo Kyle had another MRI. While we waited for the results he was able to see his friend, Mara Adams, who is 5 and has the same brain bump as Kyle. She was starting a new chemo protocol as well. Please keep Mara in your prayers with Kyle as each of them look for answers in something new.

Bellingham Bells Home Opener!

2008-06-11T12:04:00.000-07:00

The boys and I went to the Bellingham Bells home opener on Friday. Kyle's buddy, Jake Locker, is playing center field for the Bells this season. When we arrived at the game Kyle wanted to find the “Ferniemobile” (the RV they use for tailgating, actually the Ferndawg) in the parking lot. He wanted to say hi to Jake’s mom and dad. Jake’s family is always so gracious to Kyle, they grilled him up a burger and gave him lots of hugs. Nicolas had already met up with his buddy Dane Faris, Dane's mom, Sam, and little brother, Hudson. They snagged us great seats and were waiting for the game to start.

It wouldn't be Bellingham without some crazy weather! It had rained all day Friday, but the sun broke through about 2 hours before the game and it actually felt warm! We arrived at the game in t-shirts, but by the time our friends, Shane, Andrea, Julie, and Paul, arrived we had added the first of many layers. By games end we all looked like the kid from “A Christmas Story!”

But the cold didn’t stop the fun. Nicolas, Dane, and Kyle all did the Chicken Dance (video above) on the field between the 5th and 6th innings, Dane cleaned the bases between the 6th and 7th, and Nicolas ran the Dizzy Bat Race between the 7th and 8th. It was a really fun night, even if the Bells lost 11 – 1. Of course Kyle, who's glass is always half-full, looked at the score and said, “It’s actually not that bad, they only have one more than us!”

Spring Break 2008!

2008-04-24T12:31:00.000-07:00

Campbell Lund at St. Thomas with Kyle and Nicolas

view photo album here

What an amazing vacation! Kyle, Nicolas, and I spent spring break on a cruise in the Carribbean. What could make it even better? Having some of your best friends along for the adventure! We packed our bags and headed to Miami with the Lund's (Campbell, Gunnar, Kim, and Gil). After a red-eye flight we all hopped on the Freedom of the Seas, the largest cruise ship in the world, and set sail for the warm islands of Puerto Rico, St. Thomas and St. Maartin.

The ship was HUGE but so much fun. We climbed the rock wall, played ping-pong and mini golf, relaxed in the pools and hot tubs, watched Gil try to conquer the Flow Rider, and that is just for starters!

We spent an amazing night in Puerto Rico kayaking in one of their three bioluminescent bays. This was a "life list" experience. Watching the water glow beneath our kayaks, fish looking like shooting stars as the zip away from us...it is an affirmation of the wonderous aspects of life.

We played on the beach in Meagan's Bay on St. Thomas where the sand is so fine and the water is so clear it takes your breath away. And our last stop was an exciting tree-top zip line adventure on the island of St. Maartin followed by an afternoon of shell collecting on the beach before boarding the ship and sailing back to Miami.

If you would like to see some more photos of our adventure click here.

On the home front, Kyle returned from vacation feeling really good. The symptoms he was experiencing before we left seem to have subsided. On April 16th he had a check-up with Cori and Children's is remaining on the same treatment plan as before. His next MRI is scheduled for May 14th and what comes next depends on what the pictures tell us.

Thanks to everyone for keeping us in your thoughts and prayers. And if you have an extra minute, please add a little something for Caitlyn Churak, Mara Adams, Lindsey Adams, and Aidan Zaugg. These are just a few of the kids we have come to know who are fighting brain bumps like Kyle's. What they have taught us is to live each day as the gift it is. There are no extra points for saving up experiences for a "better" time.

Meet Cooper!

2008-04-01T08:00:00.000-07:00

Kyle and Cooper

We are excited to introduce the newest member of our family! Cooper is a 4 month old Australian Labradoodle.

For the past several months Nicolas and Kyle have been working hard to demonstrate they were ready for a new dog. We already have a dog, Lulu, who is a lab mix, but she is just a bit too big for the boys to snuggle. So, when we were lead to Cooper through a good friend of Nicolas', Dane Faris, it felt like Cooper was meant to be with us. Dane's family had adopted a puppy at Christmas and introduced us to the breeder.

Gail, the owner of Whispering Winds Labradoodles, invited us to her home to visit her puppies. Cooper was shy at first, but after an hour of playing on the lawn Nicolas was certain that he was the perfect dog. And Nic was right! He cuddles with the boys on the sofa, strides next to them on his leash, and sleeps in their room at night. We are really blessed to have been introduced to Gail and are beyond grateful for the gift she has given us. It is an amazing act kindness. Thank you Gail!

If you are thinking of adopting a dog Gail has 4 new litters!
Click here too see them! Or contact her at Whispering Winds Australian Labradoodles, Gail Widman, Owner/Breeder, 829 Whisper Way, Bellingham, WA 98226, 360.312.1313.

Update

2008-03-20T19:54:00.001-07:00

Kyle, Nicolas, and Christin meet Mickey Mouse!

First I want to apologize for not posting for so long. The last 8 weeks have been filled with so much activity there was little time to write it down. February flew by for all of us. We were busy with basketball, indoor soccer, and ski lessons on Sundays. The boys took a birthday trip (Jocelyn’s birthday) to Whistler during mid-winter break. Nicolas decided there that he wants to be on the Mt. Baker Race Team next year. He has no fear on the slopes. The boys skiing really jumped to the next level this season and there isn't a run at Baker they aren't willing to tackle.

The next weekend I took the boys on a wonderful, warm-weather trip to California. I want to extend a HUGE thank you to the Blackman’s, whom we have never personally met, for sharing their beautiful house with us. Their generosity made the trip possible for us. We were thrilled to spend time at Disneyland and California Adventure with the Davis Family. Shane is a great friend of Kyle and Nicolas. He is our neighbor and also a fellow first grader at Happy Valley with Kyle. His big sister, Andrea, is also wonderful to the boys. It was great to share the “Happiest Place on Earth” with our friends.

Nicolas was able to conquer is fear of roller coasters and now loves Big Thunder Mountain. Kyle filled his thrill-seeking side by trying every coaster with me. We rode Space Mountain, the Matterhorn, California Screamin’ and the Tower of Terror. We were able to round out our adventure with a couple incredible days at Newport Beach. We shopped, played games, and spent time enjoying the sand and surf.

Now here we are in the middle of March! Today is the first day of spring, soccer practices are in full swing and games begin this Saturday. We are looking forward to Easter and take to heart to reason we celebrate. Remembering the relationship between sacrifice and miracle and that enduring one brings hope for the other.

Eight incredible weeks since Kyle's last MRI. We returned to Children's yesterday and again Kyle displayed his bravery having his first MRI without sedation. What a champ! He lay motionless in the machine for almost 30 minutes. In fact, for a few minutes in the middle he actually fell asleep! We are really proud of him.

It is the next part of this post that is hard to write. How do I chose words that share what is happening yet still convey our unending belief that Kyle is a competitor and continues to use all his inner strength to fight off his brain bump? The hardest thing to say is that although Kyle continues to feel good and remains symptom free, his tumor has yet again shown growth. His doctors retain their belief that the clinical trial drug is slowing the growth so he continues the current treatment. We continue to look into other options and hope that a break-through study is just around the corner.

As always, we pray that the tumor will stabilize, that it will tire of rebuffing the enormous fight Kyle comes at it with every minute of every day. Our hope is unwavering that Kyle’s love of life, his will to win, and the prayers and good thoughts from you will ultimately make the brain bump pack it’s bags and move out.

Help us by continuing your prayers, positive meditations, and thoughts of love and healing. Not just for Kyle, Nicolas, and our family, but for all the children and families facing DIPG.

Thank you for keeping us close to your hearts, you remain close to ours.
Christin

Still strong and symptom free!

2008-01-31T09:17:00.000-08:00

Kyle and Nicolas learn a magic trick.

Last week Kyle had his latest check-up with Dr. Olson and the 6th MRI since finishing his radiation treatment last April. It was a day that started with Jell-O squares and chicken broth (he’s only allowed clear liquids until 2 hours prior) closely followed by intense Pokemon battles with Nicolas as the boys played Nintendo DS on the car ride to Seattle. Kyle was excited for root beer smelling “giggle gas” as he drifted off to sleep for the MRI. He woke up to his brother rubbing his head and quietly whispering that he had cereal and milk waiting for him.

That afternoon Kyle had his routine checkup. Dr. Olson tells us Kyle continues to show improved balance and excellent neurological strength. He is still free of any “brain bump” symptoms and the MRI showed that the tumor remains relatively the same. What does it all mean? I wish we knew. The only answers are the ones we feel deep within us: Kyle is strong, he is a fighter, and he is certain he will win.

We also know Kyle is happy. His weekends are filled with basketball games and skiing at Mount Baker. He loves the new bike ramp he got for his birthday from this grammie, grampie, and aunt Issy. Kyle and Nicolas are eager to start working on their science fair projects and are hoping for blue ribbons again this year. We sing out loud in the car to our favorite songs, rock out with papa on Guitar Hero III, and we laugh often. Every day we share together is a blessing.

We hope that each of you reading this can find the same daily joy.

A good friend reminded me that this journey isn’t a sprint to the finish, but more like an iron-man triathlon that demands endurance, strength, hope, and prayers. Thank you for keeping us in your prayers.

Happy Birthday Kyle!

2008-01-17T00:00:00.000-08:00

Hurray! Hurray! Kylie Wylie turns 7 today!

Happy Birthday to You,
Happy Birthday to You,
Happy Birthday dear Kylie,
Happy Birthday to You!

We love you Kyle and hope you have a wonderful birthday. We know that you are going to tackle 7 with the same tenacious spirit and love of life that filled up all of year 6! We can't wait to share each day with you.

xoxoxoxoxoxoxoxoxoxoxoxoxoxo

Happy New Year!

2007-12-28T15:23:00.000-08:00

Wow, December has flown by for us! The Monday following Thanksgiving the boys and I took a trip to Kauai with my parents and my sister. It was a great family vacation. We were able to find sun each day but one, even though it rained over most of the island the entire time we were visiting. The boys played in the surf and we all laughed a lot.

Kyle had his monthly check-up with Dr. Olson on December 19th and it went very well. Dr. Olson told Kyle that he thought it was his best check-up in the last three months! Kyle continues to show no symptoms of his tumor and his blood work and counts remain strong. What a great way to roll into the holidays!

Christmas Eve the boys celebrated with my extended family and Christmas Day they spent time with their dad, his girlfriend, and her family. Although it is a busy schedule, both Nicolas and Kyle love the chaos and spending time with family.

As we wrap up 2007 there is much to reflect upon. I would never have guessed what this past year would bring us. Cancer is an unwelcome visitor that no one needs or deserves. But all the challenges of the year have taught me so much. I have learned that we all have an inner strength that bolsters us in the darkest times. I have learned that love is an amazing gift: it fills us when we feel despair, it comforts us when we feel alone, and it brings us joy when we feel hopeless. I have learned that people are good. But most of all, I have learned that cancer can’t beat us. It can’t take away all the lessons of hope, joy and love that been learned. It can’t take away the memory of each moment of this amazing journey of life.

As I look to 2008 I am filled with hope. Hope for Kyle and all the other kids fighting brain bumps. And hope for all of you who have prayed for Kyle and our family. We hope that 2008 brings you joy, laughter, and happiness.

MRI #5...The real meaning of Thanksgiving!

2007-11-18T21:37:00.000-08:00

We are happy to share with you that the results of Kyle's MRI show his tumor remains stable. In fact, if you multiply the measurements, it is actually a bit smaller by volume then his MRI in October! The changes in the tumor are a strange thing. The don't really indicate anything. But, the best news is Kyle remains symptom free and feels great.

Thank you to everyone for the extra prayers and positive thoughts. This news is a remarkable way to begin the Christmas season. I can't tell you how much joy it brings me to hear Kyle say, "I have some great news! My brain bump shrunk!"

I wanted to take a minute this week of Thanksgiving to share the reasons I am thankful.

I am thankful for finally seeing each day as the gift that it is. I am thankful for slowing down to enjoy this moment and not always trying to plan for the next. I am thankful for standing in the rain and wind watching my boys play soccer. I am thankful for packing lunches, parent-teacher conferences, and waiting for the school bus. I am thankful for the time to read bedtime stories, play card games, and cuddle on the sofa. I am thankful for the prayers of friends I know and friends I haven't met yet. I am thankful for my family. I am thankful for every kiss and hug from Nicolas and Kyle. I am thankful for realizing what is important and trying to set the rest aside.

I know it might sound crazy to say that I feel like I have so much to be thankful for this year, but it is true. I hope that you are all able take a moment to count all the reasons you are thankful too. I also wanted to ask if you could please take a moment Friday to send good thoughts to Kyle. It is already time for MRI #5 since he finished radiation and it is your prayers and good thoughts that make our trips to Children's a little easier.

Happy Thanksgiving,
Christin

Happy Halloween!

2007-11-08T22:31:00.000-08:00

Okay, Halloween has come and gone, but we have been so busy that I haven't had a chance to update Kylie's blog. Time since Kyle's last MRI has flown by. The boys have been busy with soccer and school. They are even taking French lessons so they can talk with their cousin when they visit Quebec. For Halloween Kyle dressed up like Peep, his favorite cartoon character and the mascot on his t-shirts. His friend Campbell dressed like Peep's best friend Chirp....together they looked AMAZING! So cute! We will post photos soon.

Kyle had a check-up with Dr. Olson at Children's on Halloween afternoon. He wore his costume and cracked everyone up. It was quite a feat to take out all his stuffing for his monthly weigh-in. The check-up was great. Dr. Olson says Kyle is as strong as ever and still showing no symptoms of the "brain bump." What a great thing to hear! We quickly jumped back in the car and headed home for trick-o-treating!

Thank you for your continued prayers, positive thoughts and encouragement. Please keep them coming. We are strengthened by the support we feel from all our friends, those we know and those we haven't had the chance to meet yet.

p.s. If anyone is planning on attending either of the next 2 Husky home games, be sure to visit the new Husky Legends Center. They have a video with Jake Locker and Kyle that we can't wait to see! We are hoping to make it to at least one more game this year...Go Dawgs!

MRI #4 : Kyle remains strong and on top of his battle.

2007-10-05T12:01:00.000-07:00

After a nutritious and delicious grape Jello breakfast, we made our now routine journey to Seattle for Kyle’s fourth MRI since completing radiation. As usual, it was an emotionally taut day but Kyle's infectious good spirits persevere and delight everyone he encounters. Although the MRI came back showing the tumor has changed, after review by the tumor board at Children’s Hospital his doctors believe he remains stable as he continues to be symptom free. Kyle's eagerness and ability to perform any physical test always impresses his doctors and nurses. And that eagerness extends into today, as Kyle gets ready for the Fun Run at Happy Valley Elementary. Not even sideways-rain can dampen his resolve to run more laps than any other first grader! Keep up the prayers and positive energy you are sending to Kylie! Your prayers, along with God’s grace, reinforce our belief that Kyle is winning this battle. And when he does it is a miracle we will all share.

Lucky Dawg

2007-09-17T08:49:00.000-07:00

Kyle heads out to mid-field for the coin toss at Saturday's Husky game.

Kyle gets a chance to wish Jake Locker good luck before the game.

"Hey mom, Garcia's bicep is as big as me!"

Coach Willingham takes a knee to say "Keep up the fight" to Kyle.

Wow, we had a great time at the Husky Game on Saturday! Yeah, we may not have won the game, but the day was still fantastic. Nicolas and Kyle were all decked out in their Husky gear. The Huskies gave them each Lucky Dawg t-shirts, pom-poms, and Coach even signed a ball for Kyle. They gave us great seats too!

About 30 minutes before kick-off Kyle and I went down to the field. Kyle was able to meet the cheerleaders and Harry Husky, stand on the helmet car, pet Spirit, and stand mid-field on the sidelines as the band played the national anthem.

It was crazy loud when the Huskies took the field. The captains came out first, stopping to meet Kyle. They took Kyle's hands and headed onto the field for the coin toss. Kyle said the players were HUGE!. On the way back to the sidelines Coach Willingham stopped to take a picture.

Back on the sidelines, Jake found Kyle and they were able to say "hi" and take a quick picture. I know it made Kyle's day for Jake to make a special effort to find him.

After the game Kyle wanted to call Jake. Kyle said to me, "I hope he's not too sad that they lost. The only thing that matters is that he played his best. He'll win next week. I want him to know I am glad I am his friend." Somehow a six-year-old can always put things into perspective.

We want to give a BIG thanks to the Make-a-Wish Foundation and Husky Football for making us all feel like Lucky Dawgs.

Check out the update on Kyle in today's Seattle PI!

2007-09-06T21:32:00.000-07:00

Click here to read: http://seattlepi.nwsource.com/huskies/330698_locker07.html

Well, it's been quite a week! On Tuesday Kyle started first grade at Happy Valley Elementary. The above photo of Nicolas and Kyle was taken before heading to the bus on the first day of school. Kyle is excited to be in Mrs. Stevens' class with some friends from last year. He is looking forward to making new friends too!

Wednesday, his dad and I took Kyle for his monthly visit with his neuro-oncologist, Dr. Olson, at Children's Hospital. Over the summer Kyle grew more than an inch! The check-up went well and Kyle is still symptom free. The hardest part of the trip was missing part of the second day of school. Our next visit to Children's will be on October 3rd for an MRI.

The boys were also thrilled to learn that a friend of mine has given us tickets to the Husky game this Saturday. When Kyle found out he was going to the game he immediatly had me call Jake Locker. He had to let Jake know he would be there. He said Jake would be excited and would want to know where to point after he scored his first touchdown (a promise Jake made when they played football during Kyle's radiation last spring). Above is a link to an article in today's Seattle PI where Greg Johns eloquently recounts the events of last spring. He also gives a wonderful update on Kyle's ongoing battle against the "brain bump".

It is hard to believe that summer has come and gone. Soon I hope to sit down and put together photos of our summer adventures to share. We are planning an end of summer bbq at the Bellingham skate park on Sunday, September 16th. We have lots of skating goodies to auction. Details are in the column on the right.

Thanks again for keeping Kyle and our family in your prayers and good thoughts. We appreciate seeing the bumper stickers on cars as we drive around town. Kyle and Nicolas are always pointing them out. Nicolas then says, "Look Kyle, another person is cheering for you to beat your brain bump!" It really means more than a simple blog post can convey.

MRI #3....

2007-08-06T21:38:00.000-07:00

We are very excited to report that this morning Kyle had this third MRI since finishing radiation and things remain stable.

After taking a wonderful vacation to Vancouver Island to spend a few days with our cousins Liz and Christopher, we got up early this morning for the drive to Seattle. Kyle was his easy-going self, not complaining about the fact he'd had to skip breakfast to get ready for his latest round of tests. He chose bubblegum flavor for his giggle gas and took a snooze while getting new pictures inside his head. We were all nervous waiting to hear what has been going on inside that little noggin. We waited about an hour to learn that there doesn't appear to be any noticeable growth and that the "brain bump" seems stable at this time.

We continue to be amazed by Kyle. He is still symptom free, he has grown nearly an inch in the last 8 weeks and has lost all the chubbiness caused by the steriods. He spends his summer days playing with friends, going to horse camp, taking swimming lessons and riding his bike.

What happens next? Well, now we settle into the next 8 weeks...packing in adventures for the remainder of the summer, getting ready for the start of first grade, and, of course, get ready for Husky Football and cheering on Jake Locker!

Ooo Um Gow Ah ... What a Day at The Pool!!

2007-08-05T12:44:00.000-07:00

Thank You! Thank You! Thank You!

We want to send a HUGE thank you to everyone who took time out of their busy summer schedules to join us for a wonderful day at the pool! Not only did many dedicated kids swim hundreds of laps, but we also shared a great night of cannon balls off the diving board, a bbq dinner, volleyball in the pool and a raised money for the Kyle Roger Fund!

Thank you to the Bellingham Golf and Country Club, the pool staff, and all Kyle's friends and supporters for making it a great event that Kyle will remember and cherish for a long time to come.

HAWAII!

2007-07-03T20:37:00.000-07:00

Nicolas & Kyle swimming with the dolphins
Kyle and his new best buddy

Aloha! We just got back from our FANTASTIC Make-A-Wish trip to Hawaii. We had so many great experiences...swimming with the dolphins, learning to surf (surfing video will be up in a couple of days!), snorkeling on the North Shore at Shark's Cove, eating shave ice, and just plain old good fun playing in the surf. We will be posting more pictures soon, but wanted to give a big thank you to the Make-A-Wish Foundation and all their partners in Hawaii (Dolphin Quest and Hawaiian Fire Surf Instructors) for their generosity....We have magical memories that will last forever.

SKI TO SEA RACE - TEAM KYLE

2007-07-03T20:24:00.000-07:00

The Kylie Mobile
Canoe to Mt. Bike

Kyle has inspired many people with his strength and his amazing attitude. One group was so inspired that they formed Team Kyle to participate in the Bellingham Ski to Sea race (7 legs – cross country, downhill, run, road bike, canoe, mountain bike, kayak). When asked to participate, one team member said “It’s for Kyle? Of course I’ll do it!”

Memorial Day weekend started with a barbecue for the team, their families, and others who just love to be around Kyle and his family. On race day, the team cars were highly visible from one end of the course to the other with “Team Kyle” and “Ooo-Um-Gow-Ah” painted all over the windows. Kyle, Cola and their buddies had fun playing on the beaches while they waited for the canoe and kayak to finish. On many legs, Kyle’s chant could be heard cheering the racers on. Kylie t-shirts were everywhere!! While some legs were finished in astonishing time (Gil Lund on the cross country ski leg), and others were challenging (that nasty whirlpool catching the canoe), every racer put in tons of effort and did a great job!! They all showed Kyle how much he is adored and admired!

A big thanks and congratulations to Team Kyle: Cross-Country - Gil Lund, Downhill - Harold Cashman, Run - Amy Wilson, Road Bike - Gary Bass, Canoe - Paul Davis & Brady Davis, Mountain Bike - Scott Wilson, & Kayak - John Groves.

KYLE'S 2ND MRI RESULTS - GOOD NEWS!

2007-06-11T17:22:00.000-07:00

Kyle had his 2nd MRI today (since finishing radiation) and the results are good. There is no discernable change to the tumor. The size has not changed and the tumor remains stable. Most importantly, Kyle continues to feel well and live the life of a normal, six year old boy. The family is getting ready to head to Hawaii, thanks to the Make-a-Wish Foundation, for a little sun, surfing and dolphins! Stay tuned for more details in the weeks ahead. Kyle and his family are grateful for your continued support and prayers.

SOUTHWEST ADVENTURE!

2007-06-11T17:17:00.000-07:00

Nicolas, Kyle and I spent a hot and fun filled week in Scottsdale, Arizona with our friends Tracy, Sage & Skye Davis, and Kim, Campbell & Gunnar Lund. In between visits to the pool to cool off we took a desert hike, went off-roading with an Arizona cowboy in the Saguaro Cactus National Park, panned for Gold (Eureka!) hammed it up in the wild west town of Rawhide, and explored Phoenix's Desert Botanical Garden. We even were able to hang out with Lindsey Tyler and Erin Carter, our two long-time and much loved babysitters from back home!

FLORIDA FUN!

2007-04-28T19:42:00.000-07:00

"We all had such an amazing time in Florida. Our days were filled with fun activities and always started with a magnificent sunrise at the beach. We then had breakfast followed by our daily tennis matches with Grand-Papa. The boys impressed us with their natural ability to return the ball. They took to the sport and I'm sure we'll be visiting the courts here regularly. Our mornings usually ended with a refreshing dip into the pool. Following a quick lunch (Grand-Maman's "Sloppy Joes" were definitely the week's favorite, Nicolas practically inhaled them!) we were off to the beach. Kylie and Colas had an absolute blast in the ocean. They loved tackling the waves, watching fish swim through the top of the waves and even riding the waves on the boogie board. Of course, we also collected many sea shells and even seeds from shoreline plants, 697 seeds to be precise! (Kyle loves to count things!) We often ended our afternoons at the beach with a peaceful nap on the sand and pleasant dreams brought by the sound of crashing waves. It was simply fantastic."

MORE FLORIDA FUN!

2007-04-28T19:28:00.000-07:00

Good Morning! Bonjour! Kyle & Nicolas

Papa & Kyle
Grand-Papa & Kyle

KYLE'S MRI RESULTS

2007-04-10T12:54:00.000-07:00

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.

ALL DONE!

2007-04-05T12:29:00.000-07:00

Kyle hugs his friend Laura on his last day.

Woo Hoo - Say Goodbye to the Kidnappers!!!

2007-04-04T22:08:00.000-07:00

Kyle finished radiation yesterday! Although I think he will miss his daily round of giggle gas, he is more than happy to be finished with the routine of heading to the UW Medical Center for an early morning nap. For a boy who loves breakfast it has been quite a test to not eat anything for 6 hours before his treatment! But he may be most excited to have his pic line out. Now he can go swimming, take a bath without having to hold his arm up out of the water, and he doesn't have to wrap his arm before soccer or skiing. Not to mention he doesn't have to put up with his mama and papa flushing his pic line every 8 hours!

Kyle had a great weekend leading up to the end of his treatment. He went to Happy Valley on Friday spending the afternoon with his kindergarten friends. Saturday he played soccer with his Southside team. He scored many goals (I think the tally was 9) and came up with a great save robbing the opposing team of a goal! Kyle and Nicolas went mountain biking with their dad and Cara on Saturday afternoon and finished off the weekend at their friend Mackenzie's birthday party at Tube Time. What 6 year old wouldn't like a weekend like that?

Sunday night Kyle and I made our way once again to Seattle. After his morning treatment Kyle spent a good part of Monday afternoon looking through quarters with his grammie. He is collecting all the state quarters and is busy filling books with the ones he has so far. His grammie even went to the bank Monday to buy rolls of quarters for him to sort through.

Nicolas and papa came down on Monday night and met us at the UW on Tuesday morning. Kyle raced in on his healies, zooming down the halls as fast as he could. He surprised all the nurses with flowers to thank them for taking such wonderful care of him. And they had a surprise for him too! A graduation certificate that they had all signed with wonderful thoughts and a new stuffed Husky puppy named Slush! It was sad to say goodbye to the other boys who have been in treatment at the same time, Jordan and Diego, but they are both finished this week too! Kyle,

Nicolas and papa went out for a great big breakfast to celebrate and spent the day playing at the Ronald McDonald House. We had a quick check up at Children's in the afternoon and then headed back to grammie and grampie's for a night of FARKLE and mexican food! Today we start our way back to "normal". Kyle woke up at 6:30 ready for cereal. Tonight we are going to watch the Mariners at SAFECO Field and then we are heading home. Tomorrow it is back to the Cottage School in the morning and then Friday afternoon with this friends at Happy Valley.

Thank you to the wonderful caregivers at the UW for embracing Kyle and focusing so much positive energy to helping him fight to be well. Thank you to all our wonderful friends for your daily prayers and Kyle has his next MRI on Monday morning. It will be our first look inside his noggin in 8 weeks. We continue to pray for miraculous things!

NICOLAS & KYLE CHILLIN' AT THE POOL

2007-03-22T13:39:00.000-07:00

Keeping sunny thoughts for Kyle...

Kyle meets Slush, a graduation present from the staff.

2007-03-21T18:25:00.000-07:00

KYLE MEETS HUSKY HERO JAKE LOCKER

2007-03-15T08:20:00.000-07:00

Click here to read: http://seattlepi.nwsource.com/huskies/306406_johns07.html See all the photos at: http://www.kylerogerphotos.blogspot.com/

POWA SWEATSUIT

2007-03-07T13:36:00.000-08:00

Kyle's one-of-a-kind Powa Sweatsuit made with love by his Grammie, Linda Willhite.

KYLE & CHRISTIN

2007-03-07T08:34:00.000-08:00

HANGING OUT ON VANCOUVER ISLAND

2007-03-05T21:31:00.000-08:00

Kyle & Nicolas having fun with their cousin last summer on Vancouver Island

2007-02-20T21:13:00.000-08:00

TO READ ALL OF KYLE'S UPDATES GO TO: www.kylerogerjournal.blogspot.com
TO SEE ALL OF KYLE'S PHOTOS GO TO: www.kylerogerphotos.blogspot.com
TO WATCH ALL OF KYLE'S VIDEOS GO TO: www.kylerogervideos.blogspot.com

Kyle's Diagnosis & Treatment Plan

2007-02-16T13:27:00.000-08:00

Kyle's diagnosis & treatment plan can be viewed at: www.kylerogerjournal.blogspot.com

Kyle Roger

2007-02-13T18:56:00.000-08:00

What's up with Ooo Um Gow Ah?

2007-02-11T10:50:00.000-08:00

Kylie has made up a little mantra to help empower himself during his treatment. It goes Ooo Um Gow Ah - Kylie's Got the Powa!! Hearing Kyle enthusiastically chant his mantra you can't help but be sure that he is going to give his tumor a serious run for its money.

To support Kyle, we have created a logo with Kyle's favorite cartoon character, Peep, cheering Kylie on with his Ooo Um Gow Ah chant. T-shirts, bumper stickers and wristbands are available for purchase with all proceeds going to the Kyle Roger Fund.