Happy 13th Birthday Kyle

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 and dinner – snacks too! I am asking you to join us in this celebration. If you do you will be giving yourself a gift as well, soaking in the pure excitement and joy of your children as they delight in a true indulgence.

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

The harm lies in the experience you give up. Before we started ice cream day my boys would ask me, “Can we have a day where we only eat 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 them their psychologist asked them to go home and make a list of 10 things they wanted to do together and bring it back the following week. That week they made up their list. Most of the things on the list were adventures but at the top of the 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. As the boys read their list I immediately found myself putting caveats to the idea of 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 a health perspective she said for one day a year – when they boys ate well-rounded meals every other day – it certainly wouldn’t hurt them. She encouraged me to let go of what was holding me back.

So I did. We picked a day on our drive home. We made a special 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, ice cream cones – the planning was simply joyful. Don’t get me wrong; it was a continual battle in my head to keep the urge to add a condition of the occasional carrot, piece of fruit, or some other “good for you” food into the day. But stopped myself. I let the joy of the experience overtake the rational mothering thoughts in my head.

What I can tell you is of all the days in the two years Kyle battled brain cancer, Ice Cream Day hovers at the top of the list of magical experiences. This in a two-year span that we crammed with as many experiences as we possibly could. We had ice cream for breakfast, and then at lunch I brought them ice cream to school. They raced home from the bus rattling off how they wanted their ice cream snack prepared. And for dinner we ate sundaes with all the topping they could think ask for. You might think that the boys would have been bouncing off the walls or have tummy aches, in spite of all my certainty 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 unforgettable memory. We shared laughs. We were joyful. By giving in on one simple thing for a single day I allowed myself to embrace they miracle of childhood through the delight of my boys.

So I ask each of you to stop the rational reasons to put limits on your own Ice Cream Day. Stop and think about if you lost your child would those reasons have been worth it? Would you have regrets? Maybe we can’t raise our kids indulging their whims for fear of regret, but we can pick a single day to celebrate them. As you do you can help honor the life of a boy who embraced every day, every challenge, every experience with the whole of his being and shared that gift with everyone who knew him.

I love you Kylie. Not a day passes I don’t think of you laughing at a joke you’re telling, or racing down the hill on your bike with “no hands,” or begging to play a game of Yatzee, or asking me to lay down and cuddle you as you fell asleep. You taught me to live life without fear, to live life at full speed, and to take a minute or an hour or a day to live life without worrying about all the rules.  

On Ice Cream Day we honor and celebrate you.

Please share this post and story with your friends and family with the hope that it inspires them to take a day to savor the simplest joy of their life and the lives of their children.

- Christin

Happy 11th Birthday Kyle!

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 and dinner – snacks too! I am asking you to join us in this celebration. If you do you will be giving yourself a gift as well, soaking in the pure excitement and joy of your children as they delight in a true indulgence.

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

The harm lies in the experience you give up. Before we started ice cream day my boys would ask me, “Can we have a day where we only eat 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 them their psychologist asked them to go home and make a list of 10 things they wanted to do together and bring it back the following week. That week they made up their list. Most of the things on the list were adventures but at the top of the 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. As the boys read their list I immediately found myself putting caveats to the idea of 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 a health perspective she said for one day a year – when they boys ate well-rounded meals every other day – it certainly wouldn’t hurt them. She encouraged me to let go of what was holding me back.

So I did. We picked a day on our drive home. We made a special 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, ice cream cones – the planning was simply joyful. Don’t get me wrong; it was a continual battle in my head to keep the urge to add a condition of the occasional carrot, piece of fruit, or some other “good for you” food into the day. But stopped myself. I let the joy of the experience overtake the rational mothering thoughts in my head.

What I can tell you is of all the days in the two years Kyle battled brain cancer, Ice Cream Day hovers at the top of the list of magical experiences. This in a two-year span that we crammed with as many experiences as we possibly could. We had ice cream for breakfast, and then at lunch I brought them ice cream to school. They raced home from the bus rattling off how they wanted their ice cream snack prepared. And for dinner we ate sundaes with all the topping they could think ask for. You might think that the boys would have been bouncing off the walls or have tummy aches, in spite of all my certainty 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 unforgettable memory. We shared laughs. We were joyful. By giving in on one simple thing for a single day I allowed myself to embrace they miracle of childhood through the delight of my boys.

So I ask each of you to stop the rational reasons to put limits on your own Ice Cream Day. Stop and think about if you lost your child would those reasons have been worth it? Would you have regrets? Maybe we can’t raise our kids indulging their whims for fear of regret, but we can pick a single day to celebrate them. As you do you can help honor the life of a boy who embraced every day, every challenge, every experience with the whole of his being and shared that gift with everyone who knew him.

I love you Kylie. Not a day passes I don’t think of you laughing at a joke you’re telling, or racing down the hill on your bike with “no hands,” or begging to play a game of Yatzee, or asking me to lay down and cuddle you as you fell asleep. You taught me to live life without fear, to live life at full speed, and to take a minute or an hour or a day to live life without worrying about all the rules.  

On Ice Cream Day we honor and celebrate you.

It's time for the Run of Hope 2011!

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

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!

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!

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!

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!

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.

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!

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.

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 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!

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...

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

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.

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

"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

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!

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

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. 

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

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

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...

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!