CHOC Walk

Kelly and Bailey at CHOC

A year ago last October, Kelly's tumor recurred right after she had finished radiation and a round of daily chemotherapy.  This was very bad news, and her doctors were very worried about her prognosis.  But through another surgery, gamma knife radiosurgery, plus her current chemotherapy protocol, she is doing so much better a year later they expected her to be doing.  We really credit her doctors, nurses, and CHOC (Children's Hospital of Orange County) with how well she is doing right now.  We are thankful for every good day we have with her.  

So now we feel it is time to give back to CHOC.  The 2008 CHOC / Disneyland Resort Walk in the Park is October 19th and we are looking forward to participating this year for the first time.  Last year, this event occured at the same time Kelly was preparing for her surgery for recurrent tumor, so we couldn't be part of 2007 CHOC walk, so we are very grateful that everything is going well right now and we can be part of this important fundraising event for the Hospital that has done so much for Kelly.  We are not forming our own team, as we did for Relay for Life, but have chosen to join the team of our good friends, the Spoonhowers - Bailey's family.  We would love to have anyone who is interested, join us in walking with Team SuperBay.  If you would like to be part of team SuperBay, please follow this link to sign up.

JOIN TEAM SUPERBAY

Make sure you click on SuperBay.

 Each participant needs to have at least $50. in sponsors to take part in the walk.  When you sign up, there is a prewritten email you can send out to ask people to sponsor you.  (Or you can ask any way you choose - phone calls, your own emails, telegrams, smoke signals, etc....)  

If you don't live close by, or you don't want to join the CHOC walk, we still need donations to reach our family's goal of raising at least $1,000. for CHOC.   Each member of our family needs to receive donations, so follow one of the links below to donate.  

Kathy 

Kevin

Kelly

Megan

Shannon

You can also send a check to us and we will submit it to CHOC.  Make the check out to CHOC Walk.  If you need our address, please email me at kathylaude@cox.net and I will send it to you.

I am also going to include Michelle Spoonhower's (Bailey's mom) story about why they feel so strongly about giving back and participating in the CHOC walk.  She wrote this before she got the results of Bailey's scans this week.  Two nodules were found on Bailey's lungs.  The tumor board at CHOC was meeting this afternoon to decide which direction Bailey's treatment should go now.   Prayers for Bailey and his family are much appreciated!  You can also go to his website to read more about him, and leave a message if you'd like.  You may have to create an identity and password if you have never been to Carepages before.  It's easy and worth it!

Bailey's Website

Michelle's Story~

Through out the past two and a half years (wow that is a long time) we have received so much love and support from everybody that we have been truly blessed. One of our huge blessings has been Children’s Hospital of Orange County. I could not have imagined a better hospital. Our kid’s absolutely love going to CHOC and that is because of how wonderful everybody has been to them. They have not only treated our son and kept him alive but they have been there for us as well. They have given me a shoulder to cry on when I needed one, made me laugh when I needed to laugh, answered all of our ten thousand questions and Drews never ending questions, they even rubbed my back when I was in labor, wheeled me to the big people hospital across the street, and promised me that they would take care of Bay (when I went into labor at CHOC while Bailey had a fever that would not go away). They also came to visit Addison and I at the hospital and they even brought Bailey over to visit me and let us take a nap together. There were so many situations that were not ideal but yet they were made ten times better being at CHOC. Oh and did I also mention that when our stem cell collection was denied by our insurance that CHOC picked up the bill for it. That was a biggie.
A year and a half ago when Bay relapsed we went to a Rhabdo specialist at another children’s hospital and all he talked about was hospice and Palliative care. He was just looking at Bay as a statistic and not as my son. Although our Doctor’s at CHOC were very honest with us about Bailey’s prognosis they have never given up hope on him and for that I will thank them forever.
We are so grateful that we have such a wonderful Hospital. That brings me to my next point. It is time for that time of year again for the Spoonies to give back. CHOC is having their annual CHOC walk at Disneyland Sunday October 19th. This is a time that we can thank them for everything they have done for us. Last year we started our SuperBay team and we had a huge success. My goal was a hundred walkers and we ended up with 145 and we raised over 10,000 dollars.

We had so much fun last year and I am looking forward to seeing a bunch of you again this year. It is a very fun family event and you get to walk through Disneyland and California Adventure how cool is that. So please help us out and come and have fun with the Spoonies. We would love to see and spend the day with all of you. If anything you get a SuperBay shirt.

If anyone has any questions, please feel free to contact me (its Kathy again!) Hopefully I can find an answer for you!  We'd love to have you walk with us and Team SuperBay, or donate through us and Team SuperBay.  Thanks so much!

One more thing (remember yesterday I said I had a lot to say!)  Here is a link to an article in a Boston Newspaper recognizing Childhood Cancer.  Take a minute to look at these photos that tell a lot about childhood cancer.  Sadly, I recongized some of these kids.  Please leave a comment on the article, even if is it just thanks for recognizing Childhood Cancer and raising awareness.  We need to really make an impact that this awareness is needed so cures can be found for kids like Kelly and Bailey, and so many more......

http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html

A New Family Member

We have a new family member.  Kelly had found this dog and couldn't stop thinking about him,  All the girls were anxious to get a dog, but Kelly was set on this particular dog.  So far we like Murphy for a name, but let us know if you have any good ideas for a name for a male dog.  Thanks for all your ideas, Diana!
Don't forget to eat at Chili's tonight.  All profits will go to St. Judes Children's Research Hospital.  We will be at the Chili's in MIssion Viejo on Crown Valley.  If you can't eat there, you can get your food to go, and they will still donate the profits.   This is taking place at all Chili's across the country all day and evening.

I have more I want to write about, but it's time to go pick up kids.  I'll have more tomorrow!

Vote For Project Brain Child

Project Brain Child is an iniative of the Pediatric Low Grade Glioma Association.

Members Project is a program sponsored by American Express where cardmembers submit innovative ideas for projects that make a difference. Cardmembers vote on the projects, and the winning 5 projects will receive up to $1.5 million in funding from American Express, awarded as follows:

$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects
The Pediatric Low Grade Glioma Association (PLGA) submitted their project idea to American Express in August. They will use the funds to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry. The information collected in this registry would allow scientific researchers and medical experts to target specific genetic abnormalities with existing drugs most effectively.

The registry will embody all brain tumor types, not just low grade gliomas. (Kelly has a high grade glioma.)

Project Brain Child was selected from over 1190 other projects to be in the top 25. As of September 17, they are in 9th place.

They need to be one in fifth place or better to receive an award. Votes must be cast by September 28.

Any American Express cardholder may vote. If you don't have an American Express card, you can still help by spreading the word to your friends.

Brain tumors kill more children every year than all other diseases combined. Please help this effort.

So please consider taking two minutes of your time to vote for this worthy project.  There are only 3 days left, so let's vote today!  Or spread the word if you aren't an American Express card holder!

Bailey went in for his scans today.  His family would really love prayers for clean results!

A No Bucket Day!!

Kelly actually had a good chemo day today!  Thanks to my online friend and fellow brain tumor mom, Ellen, for her advice with what helped her daughter with the same chemo treatment.  We tried it today for the first time and the difference was amazing.  Kelly stayed in the common area painting and chatting with her friend Cheyenne, then they both moved to Cheyenne's room to watch TV together and work on their pillow kits that they got from Child Life (thanks Christy!)  Normally, Kelly would be in her own room most of the day being sick.  This was such a wonderful change for her.  Hopefully she will continue to feel good through this evening and tonight!  She really wants to go to school tomorrow and of course, make it to Cold Stone Creamery to help with their Make A Wish Ice Cream Social.

This is Kelly's pillow she made today. 

 You can click on it to enlarge it. 

 The balloons say Love, Hope, Believe.  

That really tells how Kelly is dealing with her illness.

Don't forget to get your ice cream at  Cold Stone Creamery tomorrow, then on Monday, Chili's is donating all their profits to St. Jude's Children's Research Hospital.  What a great reason to eat out.  You can also get your dinner to go.  If you click on the Chili's box to the right, (yes, the one that is cut off at the edge of the page)  there is more information on how Chili's is helping St. Judes this month. 

Anyone who is interested in helping find a cure for Childhood Cancer, here is a great place to see how to help.  We are now part of this.   www.teamunite.net 

Make A Wish Fundraiser

Thank you for all the birthday wishes for our 16 year olds!  It is also good to hear many of you will be at Cold Stone Creamery Thursday which will benefit Make A Wish.  A Public Relations Coordinator from Kahala Corp, which is the parent company of Cold Stone, sent me an email letting me know that some of their other restaurants were also hosting giveaway events this week between 5:00 and 8:00 pm, which will also benefit Make A Wish.  If you live near any of these restaurants,  here is a great reason to go out to eat this week.  Below are the give away signature items at each restaurant in exchange for a goodwill donation to Make A Wish.  Make A Wish Stars will also be sold throughout the month of September as part of the effort to raise money for Make A Wish.  As most of you know, Make a Wish grants wishes for children with life threatening medical conditions, such as Kelly's.

• Tuesday, September 23 – Blimpie – 3 inch Turkey sub www.blimpie.com

* Not valid in Blimpie locations within Hess convenience stores.

• Wednesday, September 24 – TacoTime – small order of MexiFries www.tacotime.com

* Not valid in TacoTime stores in IN, MI, IA, CO and the Seattle area.

• Thursday, September 25 – Cold Stone Creamery - a choice of two 3-ounce ice cream Creations:

o Emily’s Creation – Nutter Butter® ice cream mixed with yellow cake, Kit Kat® and white chocolate chips

o Jack’s Creation – Marshmallow ice cream mixed with OREO® cookies, chocolate chips and fudge www.coldstonecreamery.com

• Friday, September 26 - Great Steak & Potato – small order of Great Fries www.thegreatsteak.com

Kelly has labs today and chemo tomorrow, so hopefully she'll be ready to  help at Cold Stone on Thursday evening!  She loves all the cards and goodies she received in person and in the mail!  It is nice to for her to have something so fun happen on her chemo week especially.  It is no fun for her to keep going to these treatments knowing how they make her feel.  We really appreciate all your good wishes for her!

Happy Birthday!

For those of you who haven't read our comments, Kevin is back home!  He got home last weekend from his military duty in Hawaii and hopefully will be here for awhile now.  (Every time I say he is home for good, something happens, so I am not saying that!)  So we are all happy to have our whole family at home together again.  He is home just in time to help us celebrate a big day tomorrow.   Kelly and Megan's 16th birthday is tomorrow!  We are taking them out to dinner tonight since tomorrow is busy with school and dance (that Megan won't miss, even for her birthday.)  Megan also just got her driving permit and is driving every chance she can get.  

This week, on September 25th, Cold Stone Creamery is having a Make A Wish Ice Cream Social between 5:00 and 8:00 pm. So here is a good reason to go have some Ice Cream and support Make A Wish.  Kelly will be helping at our Mission Viejo Cold Stone Creamery at Gateway Center as a Wish Kid Greeter.  This is what we received in an email about the event:

Throughout the month of September, Cold Stone Creamery will be selling Make-A-Wish wall stars to benefit the Make-A-Wish Foundation, an organization that grants wishes to children with life-threatening medical conditions. Be sure to visit your local Cold Stone Creamery to try two new flavors, Nutter Butter® and Marshmallow, and the very special “Make-A-Wish Creations” inspired by Jack and Emily, two Wish Children.

· Jack's Creation - Marshmallow ice cream with OREO® Cookies, Chocolate Chips and Fudge
· Emily's Creation - Nutter Butter® ice cream with White Chocolate Chips, Kit Kat® and Yellow Cake

To cap off this special month, don't miss the 7th Annual World’s Largest Ice Cream Social at participating Cold Stone Creamery locations nationwide, a special night to join together and share the simple pleasures of life with a FREE ice cream and family fun. On September 25th from 5:00 - 8:00PM, guests will be treated to a 3 oz. serving of Jack or Emily's Creation. Donations will benefit the Make-A-Wish Foundation.

Hopefully, Kelly will feel well enough to participate since her chemo day is this Wednesday.  We are going back to our morning time.  When she had her treatment in the afternoon, she was sick most of the night, so she wants to go back to morning so she'll hopefully feel better by bedtime and be able to sleep.  

Kelly's Moose Stamp

Special Thanks go out to my friends, Daisy and Joy.  They have a wonderful online paper craft business called eclectic Paperie.  They put out a weekly email newsletter and the first week of September they had a special newsletter for Childhood Cancer Awareness Month!  I was thrilled that they recognized this, as many people don't know about it.  Not only did they promote Childhood Cancer Awareness month, but they had a story about Kelly, who they introduced in their newsletter last year, right after she recurred and had her second craniotomy.  So this month, they put Kelly in their newsletter again, and they did something very special for her.  Below is the photo of Kelly they put in their newsletter (in her moose room of course!) Read below to see what these wonderful friends have done for Kelly.  (OK, this looked way better in their newsletter!)  If anyone would like to see their newsletter, let me know and I'll forward it to you! They do a great job with it and if you are interested in paper crafts, stamping and card making, or scrapbooking, you'll love their website! (There is a link at the end.)  Kelly absolutely loves her moose stamp.  Thanks so much Daisy and Joy and Kristen!

Revisting eP friend Kelly Laude

A Courageous Battle with Cancer

About a year ago we introduced you to Kelly Laude, a brave young girl in the battle of her life! Her treatment continues and she has had a remarkable year that you can read about in her blog. Kelly's mom, Kathy Laude, is a special friend and our former Stampin' Up! Upline who contributes and maintains Kelly's blog so we can share in her story

A Dancing Moose for Kelly

eP & Hanna Stamps Special Stamp Release

Several months ago we approached Hanna Stamps in helping us do something to help Kelly in her fight against cancer. We knew that Kelly has a love for moose, performing arts(dancing) and stamps with her Mom who is an avid stamper. I mentioned this to Kristi and she told us about Sophie(the Moose) in her ballerina outfit. Kristi worked with us and kindly agreed to participate in this special endeavor.

We are very excited to announce that eclectic Paperie and Hanna Stamps is going to offer a special stamp, Ballet Sophie. A portion of the sale of this stamp will be given to The Childhood Brain Tumor Foundation in Kelly's name. This wood stamp will be exclusive to eclectic Paperie and Hanna Stamps.

165 Little Heroes

This is a video for Childhood Cancer Awareness made by a mom who lost her 4 year old son to a brain tumor. If you watched Stand Up 2 Cancer last week, Mimi's words about Julian were read by Forrest Whitaker.  I met her last weekend when she was in California to attend the show at the Kodak Theater.  She and her husband stayed with the Spoonies (Bailey's Family!)  Thanks Mimi for all your efforts to bring awareness.  

Kelly is in the video (in the 8th minute.)  It is long, but it shows that there are so many kids affected by cancer. 

Childhood Cancer Awareness Day

September is Childhood Cancer Awareness Month.  

Today, September 13th, is the very FIRST National Childhood Cancer Awareness Day.

Childhood Cancer Facts

Childhood Cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

One in every 330 children will develop cancer before the age of 19.

One out of every five children diagnosed with cancer dies.

The National Cancer Institute's (NCI) federal budget was $4.6 billion.  Of that, breast cancer received 12%, prostrate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

Common cancer symptoms in children - fever, swollen glands, anemia, bruises and infection - are often suspected to be, and at the early stages are treated as other childhood illnesses.

Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.

Cancer in childhood is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding childhood cancer receives.

Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

The cause of most childhood cancers are unknown and at present, cannot be prevented.  (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents.)

On the average, 12,500 children and adolescents in the US are diagnosed with cancer each year.

On the average, one in every four elementary schools has a child with cancer.

On the average, every high school in America has two students who are a current or former cancer patient.

In the US, about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalant of two entire classrooms.

While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancers have proven so resistant to treatment that in spite of resesarch, a cure is illusive.

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic Leukemia, and relapsed non-Hodgkin's.

So, now you're saying, "Wow! That's absolutely ridiculous... what can I do to HELP?"

Here are some things you can do this month (and ALL YEAR ROUND, and for the most part!) to support Childhood Cancer Awareness.  None of these things involves any financial burden of any kind (except eating at Chili's... but hey, ya gotta eat right?)

~Join Team Unite - http://www.teamunite.net  to become a part of a unified voice against childhood cancer.

~Join people against childhood cancer (pac2) www.curechildhoodcancer.ning.com - to learn of efforts being made around the world to find a cure, raise awareness, and lend support.

~Eat at Chili's on Monday, September 29th, when Chili's will donate 100% of profits

~Wear gold for the kids!  http://www.cafepress.com/teamunite

~Let a family that's been touched by childhoood cancer know you STILL CARE and haven't forgotten about their struggles.

~Sign the Cure Childhood Cancer petition if you haven't already.  Ask you friends and family to sign as well. 

http://www.thepetitionsite.com/1/CureChildhoodCancer

~The information I'm sharing came from Heidi Randall, another cancer mom whose daughter lost her battle with a malignant brain tumor.  She works tirelessly to help raise awareness and support for pediatric cancer research.  You can check out her daughter's website at www.caringbridge.org/visit/jessicarandall

~Have a great weekend.....Keep praying.   Love, Kathy and Kelly

Yay, High School!

The title is Kelly's idea.  That should give you an idea of how she likes being back at school, even though it is just part time.  Actually part time is perfect for her.  She does the rest of her classes at home, so she has the mornings to work on those before school.  Then she goes to school at lunch time and has two classes after lunch.  A regular school schedule would still be too much for her right now, with chemo treatments every other week.

You can read the secret post below to see how Kelly is doing from her own point of view. You'll also notice that she is a little out of it the day after chemo.  But as usual, the sense of humor is still there. Now it is my turn to give you the latest Kelly news!  She started her two classes at school last Thursday and is really enjoying being back at school.  She actually wanted to try to go today, but as you will see when you read her post, yesterday's chemo didn't go so well.  She was pretty sick, but still wanted to try to eat dinner last night (as she said, she just felt empty)  The dinner did not want to stay down, so that kept her awake quite a bit last night.  She gets caught in the fact that she feels better with something in her stomach, but it just won't stay there on chemo day.  She was eating a hamburger in the infusion center at the beginning of chemo yesterday (while she still felt good) when her doctor stopped by to see her.  He said, "I see you have a good appetite."  To which she replied, "I am enjoying this now before I have to give it back."

School has been such a good thing for Kelly!  She is so happy to be back.  She is really enjoying her classes and loves being around her friends and classmates again.  Thanks so much to everyone at her high school that has been so supportive of her.  (Especially you, Karey!!)  Her teachers at school are great - very understanding with her.  She likes the classes she chose. She is having fun learning French and really likes having one of her good friends in class with her.  (While we are at it Rachel, it is also so nice seeing you dance at the studio again!!)  Ceramics is fun and she enjoys making things with clay, even though so far she has only made the top of a pinch pot.  This class was comfortable for her since she already knew the teacher.  Thanks for making her feel so welcome, Heather.

Kelly was so excited to get a locker this week.  It made her feel like a real high school student, even though she is only there part time.  Amazing how little things can mean so much.

Megan and Shannon are busy with their full schedules of school and dance.  Since Kelly has been feeling so well, with the exception of chemo day and the day after, I have been spending more time at the dance studio.  As some of you know, I worked in the office there before Kelly was diagnosed.  It is fun to be back there a little more, getting to know the students and helping out where I can.  I have also started some of the adult dance classes in the mornings again. It is fun for me to get back to some of my old routines.  It is also good for Kelly to have some time without me around all the time.  As much as I love being with her all the time, she does need her teenage freedom too.  Hopefully, she will continue to have clear MRIs so we can continue to enjoy what is looking to be such a good new school year.

hee hee hee. shhhh....

ok, my mom has left. she has gone to drop off shannon at school. she had a stomach ache, so she went to school at lunch. so, this gives me a chance to write a secret post. : D mwaa ha ha. totally out of the ordinary, i know, but i had chemo yesterday, so i cant go to school today. : ( anyway, i had a pretty suckish day yesterday, but thats old news. but, since i have absolutly no new news, this proves to be a problem. so, you may be wondering why im writing when there is absolutly nothing to talk about. well, i just thought that i would let my millions of fans know that i am alive and doing fine and dandy. oh! i thought of something, and this goes out to sophie miller. HEY SOPHIE!!!! who are you teachers? end of question.  well, i know that my mom always tells me to write on here. but you see, there is a reason why i only post every so often. you see, i do this for you. and this has nothing to do with the fact that i am lazy. now i know you all like hearing me post more than my mom because, well, im just cool like that. i do this because whenever i do the occasional post, it seems more special. do you see the brilliance of my logic? well, mom will be home soon. but beforei sign off, i would like to apologize for my teenagerish write. i am nearly 16 you know, i cant be blamed. toodles!

       -kelly

Celebrating Summer's End

It seems like I was just writing about summer vacation beginning.  Summer has gone so fast, but I think that is because it was such a good summer this year.  School starts tomorrow, so we decided to take our last day of summer vacation and do something fun.  We spent the day at Disneyland and C alifornia Adventure.  Shannon was excited last night about the idea of have a "Family Day" today (even though Kevin is still in Hawaii and couldn't be with us.)  It was a wonderful day at the parks since most schools have already started.   There weren't any crowds there and we could walk onto the rides without waiting in line.   It was amazing how much you can do there when there aren't a lot of people there!  

Megan, Shannon and Kelly at California Adventure.

Kelly's hair is much shorter and lighter.  It looks so nice.  Thanks Heather!

Megan in California Adventure

Kelly and Shannon on Splash Mountain.  It was a good day to get wet!

Shannon with her favorite animal - a goat!

Kelly is more excited than her sisters about school starting tomorrow.  She has learned not to take the privelage of going to school for granted anymore. (I'm not sure all kids think of going to school as a privelage like Kelly does.)  Shannon and Megan are happy to go see their friends.

As many of you are already aware, there is a show on all the major TV networks this Friday at 8:00.  It is Called STAND UP TO CANCER.   This is quote from their website,  "Here comes the event that will make television and cancer history.  Watch one night, only, Friday, September 5th at 8pm ET/PT, live and commerical free.  Broadcast simultaneously on ABC, CBS, and NBC.  Over 50 of the biggest names in entertainment, sports and music will come together to stand up to cancer.  Talk to one of your favorite stars at our live phone bank.  And catch the world premier performance of the new hit single, "Just Stand Up!"  This is Where the End of  Cancer Begins."    There will include a part on childhood cancer.  Bailey is one of the kids that will be shown.  Go Here to see the website for Stand up 2 Cancer.  

Help Cure Childhood Cancer

September is 

Childhood Cancer Awareness Month

September 13th is Childhood Cancer Awareness Day.  Gold is the official color for Childhood Cancer.  There are a couple things you can do if you would like to be part of this.  If you haven't signed the petition for childhood cancer you can click here to sign the petition to help raise awareness.  More awareness = more research funding $$$$.

I recently joined a group called People Against Childhood Cancer.  (PAC2)  If anyone is interested in joining, especially you cancer parents.  But is open to anyone such as family and friends of children who have had or are fighting this horrible disease.  The new chair of the CureSearch Board of Trustees has joined,  along with David Loeb, a pediatric oncologist at John Hopkins.  Check out his blog if you are interested at Dr. David's Blog.  Laurian, a regional coordinator for Make A Wish has also joined.  

If you would like to join the People against Childhood Cancer Group, click here

You can forward this to anyone you think may be interested in joining.

Chili's Restaurant is hosting events nationwide in support of Childhood Cancer and St. Jude's Children's Research Hospital.  Visit your local Chili's or go here to see how you can help.

I will be posting more information about Childhood Cancer Awareness during this month.

Thanks to all of you who are helping make awareness happen!