Mommys Shoes.
My mommy is wearing a pair of shoes.
They are ugly shoes.
She says they are uncomfortable shoes.
My Mommy hates her shoes.
Each day she wears them, and each day she wishes she had another pair.
Some days her shoes hurt so bad that she does not think she can take another step.
Yet, she continues to wear them.
She gets funny looks wearing these shoes. I can tell in others eyes that they are glad they are my mommy’s shoes and not theirs. They never talk about my mommy’s shoes.
To learn how awful her shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.
I now realize that my mommy is not the only one who wears these kinds of shoes. There are many pairs in this world.
Some mommies ache daily as they try and walk in them. Some have learned how to walk in them so they don’t hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.
No mommy deserves to wear these shoes.
Yet, because of these shoes they are stronger women.
These shoes have given my mommy the strength to face anything.
They have made her who she is today.
She will forever walk in the shoes of a woman who has a child with histiocytosis.
Thank you mommy for wearing those shoes for me!
Tuesday, November 17, 2009
Mommys Shoes
Flying Horse Away Program
Flying Horse Away sent over 80 kids to camp this summer.
Over the past three years, Flying Horse Farms has given the life-changing gift of camp to over 220 children.
Casino Night Donation To TXCCC

Linn Energy presented a check for $115,509 to Texas Children's Cancer Center & Hematology Service. The proceeds were raised by at the Texas Children's Cancer Center Casino Night on September 24, 2009 at the Downtown Houston Aquarium. Texas Children's Hospital and Linn Energy organized the night of casino-style gambling, spectacular prizes, dinner and cocktails.
After the check presentation, representatives of Linn Energy visited with cancer center patients and participated in the arts and crafts activities in the outpatient clinic.
Christmas Cards For Noah Biorkman
Noah and his family asked for Christmas cards to be sent to help their family celebrate Christmas on November 8. People around the country responded and sent more than 100,000 cards.
His parents recently posted the following request of Noah's Carepages website:
Wow! The outpouring of love and concern for Noah is just amazing! Scott and I never in a million years thought that so many people would want to send Christmas cards to Noah. However, please note: We did already celebrate Christmas LAST Sunday -- November 8th.PLEASE STOP SENDING CARDS AND GIFTS!!!!
Noah is very ill. He is not getting out of bed and it's time for Scott, our families, and I to concentrate on our son. His time is very short and he needs us.
Scott and I would like to say thank you so much for the support and continued show of love. However, we are asking that everyone please stop sending cards and gifts.
Also, everyone please post the stop order on Facebook and any other websites or organizations that you belong to. We need the peace right now.
Thank you for your understanding in this request.
Tuesday, November 3, 2009
Histio Heroes and Angels
Maya Chamberlin
4 Year Old Maya Needs Bone Marrow Donor Urgently
Elijah Cullison
Classmates Looking To Raise Awareness After Friend's Death
Jillian Leigh Davidson
Daughter's Spirit Lives On Through Dinner-Fundraiser
Jessica Siedel
Golfers Tee Up to Support Local Girl and Family
Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.
Great News From Kasey's Krafts

Kasey’s Krafts Inc. made over 600 Halloween kits! These were distributed to The Children’s Hospital in Denver, Give Kids the World, and Ronald McDonald House Denver. Thanks to the ongoing devotion of Kasey’s Grandma the kits were delivered on time despite Kasey’s recent hospital admission for pneumonia. This was in addition to our standard monthly commitments of general craft kits.
Get Involved!
We would like to update you on the success of the inkjet drive. As you may recall we are collecting used (or if you don’t need them new) ink and toner cartridges as a fundraiser. We received over 100 cartridges which is awesome. Pennies turn into dollars, which turns into smiles on kids faces. Due to the success, we are expanding our drive to include old cell phones, MP3s and PDAs. All of these can be dropped off at The UPS Store, located at Lincoln & Jordan in Parker. Just tell them they are for Kasey’s Krafts. Don’t feel left out if you are out of the area, you can still collect these and send them to us, let us know and we will coordinate with you!
New Offering!
We are very excited to announce a new concept we are trying to roll out. We are collecting Nintendo DS Games for re-distribution. So as you are getting ready for the holidays and are cleaning out your kids games, why not donate them to Kasey’s Krafts Inc? Again, just drop them off at the UPS Store at Lincoln & Jordan noted that they are for Kasey’s Krafts! We have experienced the joy that DS games bring do our little fighters and can’t wait to start this program! We will also collect Nintendo 360 and Wii games. These are the systems most available at the hospital. Being in the hospital recently, we experienced the downtime and are excited to help out in this new way.
Thank you for your ongoing support, you can help out by participating in any of the drives to collect items, by in-kind gifts, or donations. Check out our website for more information! www.KaseysKrafts.com If you would like a receipt, please provide your email address so we can send you a receipt for your donations.
We sincerely appreciate your ongoing support!
Katie & Kasey
Monday, November 2, 2009
Notes Left Behind
Elena hid the hundreds of notes everywhere in the house, the first were found in a backpack. Others were hidden between books, in the corner of dresser drawers, between dishes in the china cabinet or between photos stacked away in boxes, even in Christmas decorations.
In her last days she showed a community how to love and how to live. When her cancer stole her ability to speak, she turned to drawing and painting, her kindergarten passion. Elena had one of her drawings hung next to her favorite painter, Pablo Picasso, at the Cincinnati Art Museum. The painting titled “I Love You” was the fulfillment of her short, life-long dream.
In her short time, she accomplished a truly spectacular series of wishes that she alone created and inspired a cause that remains today to help children everywhere in their fight against brain cancer -- The Cure Starts Now.
Birthday Wish To My Angel
Tuesday, October 27, 2009
Histio Heroes In The News
Skylear Edmond
Community Helps Little Girl With Cancer
Tatum Null
Make-A-Wish, BNSF Team Up For Children's Train Ride
Madison Ursillo
Rare Immune Disorder Strikes Family Twice
Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.
Monday, October 26, 2009
Coping Tools For Cancer And Histio Families
In looking back at how our family coped with our daughters diagnosis of HLH there were things we used to cope. I wanted to share them.
Some simple steps to think about in dealing with the reality of your child being diagnosed with a devastating illness.
Step One: Remember to breathe. Sounds simple, but when things are going bad you will probably find that you are holding your breathe alot.
Step Two: When things are not going so well, the present is this minute. Right here, right now. As things get better you can relax and move to hour by hour. Then day by day. Even rollercoasters have there end. Just hang on and try only to get through one dip at a time.
Step Three: You remember things that comfort your child. What about yourself?
Bring things to the hospital that you would find at a day spa, or something you would take on a romantic weekend. Things that make you,and only you feel better. Take your pillow, a favorite blanket, comfy pair of socks, hand cream and put your feet up once in a while.
Step Four: Take breaks. When you can take a short walk outside. This will go very far in helping to recharge.
Step Five: Say "Thank you!" to the offers of help and accept them!!!!! You are not in this alone. You need these to get through this. Do this now so you will have reserve if something bigger happens. Let family and friends help you prepare for homecoming,make meals, do laundry or whatever they can.
Step Six: Choose your battles. Accept what you can. There will be times when there is just no answer, don't waste your energy trying to change that. There will be people that you will not get along with. Ignore them and save your energy for where it counts.
Step Seven: This is the new "normal". Nothing will be the same from now on. The good thing is that the new "normal" will start to feel okay, eventually. You have all been changed in many ways.
Step Eight: Take time everyday to be the family that you are no matter what is going on. Continue to strengthen the foundation you have built. This is what will hold you all up in times of trail.
Step Nine: This too may sound strange but try to laugh. It is one of the best ways to combat stress. I may not seem like it now but you will be able to laugh again. You will understand this with the first "She made a poo!!" happy dance and song.
Step Ten: You are not alone. Don't try to hold everything inside. There are many people willing to help,listen and get you through the moments that you will feel at your lowest. Reach out.
These are just some things to think about.
What are your coping tools?
Jacob's Wish

Please take a moment to read a great post from Reis Baron about his son Jacob (LCH warrior) and their family's experience with histiocytosis.
Jacob's been doing so well!! He's even had a cough (his first that we can remember) this week and it hasn't slowed him down a bit. We still kept him home from school today to make sure it didn't escalate or challenge his breathing. One thing about living with LCH is that the normal school-kid illnesses put you on hyper-alert, and it's hard to know if a cold might lead to a fever, which might lead to who knows what. So admittedly amidst the honeymoon phase we're still stressed when confronted with some of the more common toddler issues. You learn to live with it and move on with a watchful eye.You can read more about Jacob on his blog -- The Jacob Skye Baron Blog.
Last we left this saga we were looking forward to good bloodwork, which thankfully we got on the 12th. So Jacob had his final shot of Vinblastine, and completed his final round of Prednisone. Tomorrow is his last day of Pepcid, and best of all we've tried the 6MP (oral chemo) with some Grenadine by mouth and he loved it. This is HUGE, as it means (for now anyways) we will have no problems with the oral meds once the G tube is out. We were so worried that he wouldn't like it. Imagine having to give your child something by mouth every day for a year and they don't like it? OUCH...glad we don't have that problem...yet, anyway ;-).
The 12th was quite a day. Along with the good bloodwork in the morning, Jacob got a visit that evening from our new friends at the Make A Wish Foundation. Jacob's lead oncologist recommended him for the program, and with the help of the social work staff at Tomorrow's Children Jacob was officially asked to make his wish. We were honestly surprised, as we originally thought that Make A Wish was specifically for kids with terminal conditions. But we learned that the program more broadly covers children with life-threatening illnesses, regardless of the current state of their prognosis/recovery. It's been very humbling getting acquainted with the organization, and we're truly blessed to have them in our lives.
They came in with a cool Thomas the Tank Engine bag with a few new trains for Jacob's collection, and we discussed the gift that we felt would be ideal for him. Obviously at his age it's a bit early to take full advantage of anything from a Disney trip to meeting a celebrity. But with physical development being a major concern right now, we felt that something geared toward helping him strengthen on a daily basis would be ideal. Little did we know when they say "dream big" they really, really mean it. So we've officially gotten word that in the early spring of 2010 Make A Wish will be installing an above-ground swimming pool for Jacob in our back yard. WOW!!!! We really still cannot believe it. What an amazing gift...it is truly humbling to say the absolute least.
Needless to say 2009 has been a turnaround year for us. Quite amazing how every day has been a step further away from those days in the PICU when Jacob was indefinitely unconscious. And it's so unfortunate that in the amazing community of people we have met throughout this experience, we are confronted with sobering stories of kids who are facing huge challenges with Histiocytosis and similar rare conditions. It's so tough to hear about some of these kids who lose their battle with the disease. It's just so cosmically wrong, and just so brutally sad. We've been lucky to encounter some amazing people along the way, and we want to acknowledge them, as we've learned so much, and because of their hard work we realize how much we can do to raise awareness of these rare diseases. Here are a few children whose stories you should absolutely check out:
Ivy Kate's Story - We stumbled across Ivy's story, and we were intrigued that her course of treatment was remarkably similar to Jacob's. We reached out to her amazing family when we were in the PICU, and they gave us some invaluable perspective and encouragement. Ivy is doing well these days after battling LCH (among many other things) since she was 3 months old (2004).
Sydney's Story - While Sydney was sadly only with us a very short time, her story is amazing and her family's efforts to spread the word about Histio conditions is truly incredible. Sydney's blog is an amazing resource of information on countless Histio cases, as well as fund-raising events and information. Many thanks to Michael Golding, Sydney's Dad, for his tireless efforts to spread the word.
Henry Goldberg - While settling in at the hospital, for what would be a several-month stay, we were greeted by one of the Tomorrow's Children social workers holding a messenger bag. On it were the words "Hope for Henry". He presented us with the bag, which we opened to find a portable DVD player for Jacob. Such a generous gift, and we were stunned to find out that Henry was a boy who lost his battle with a rare form of anemia in 2002. The Hope for Henry organization, started by Henry's family, has given out hundreds of high-end electronic items to children facing life-threatening illnesses. We were overwhelmed by their generosity in our time of need.
These stories, among the many we've read at Caring Bridge, are constant reminders that we have so much work to do in spreading the word about LCH and other rare illnesses. Once you face this disease it becomes part of your life mission to get the word out, and help in any way you can. All of the above people have taken that concept to the next level, and we look forward to doing our part so our efforts can hopefully bring some comfort to families who will unfortunately face this disease in the years to come. They say every journey begins with a small step. We're so thankful that we're fortunate enough to see the path ahead of us now. Here's to stepping cautiously...
Many thanks to you all...Much Love...
Sunday, October 25, 2009
Senator Brown Speaks About Childhood Cancer
“Alexa was an active, happy, and beautiful little girl. Her courage in the face of such tragic circumstances was inspiring,” Brown said. “Unfortunately, Alexa’s battle with cancer is not an isolated case. Cancer is the number one cause of non-accidental death in children. It is responsible for more deaths from ages one to nineteen than asthma, diabetes, cystic fibrosis, and AIDS combined. And in the Clyde area of Ohio – in the Northwest part of the state – nineteen other children have been diagnosed with a form of invasive cancer in the last decade.”
Brown continued: “Today – on the last day of Childhood Cancer Awareness Month – Senators Voinovich and I have sent a letter to appropriators urging that the final Labor-HHS package include $10 million specifically for pediatric cancer research.”
You can watch Sen. Brown’s complete remarks as delivered in the video above. BTiy can read a copy of Sen Brown’s joint letter with Sen. Voinovich can be found HERE.
Manifesto -- Lance Armstrong Foundation
We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
LIVESTRONG.
Tuesday, October 20, 2009
Histio Heroes and Angels
Deakon Beavers
What Makes You So Special?
Maya Chamberlin
Youth Fishing Program Sponsors Bone Marrow Drive
Dana Juat
Diagnosed With HLH Disease
Ibrahim Meer
Plea For Bone Marrow Donor
Ilai Mishori
For Him, a Drop of Blood. For Us, He Saved An Entire World.
Parker Pruitt
Celebrating A Little Survivor
Jessica Siedel
Tourney Planned For Young Bone Marrow Transplant Patient
We also wanted to take a moment to remember and recognize several brave histio warriors who recently lost their courageous battles against histiocytosis:
Matt Cwiertny (24 Years Old -- HLH)
Benjamin Levie (7 Years Old -- HLH)
Jeffrey G. Smith (13 Years Old -- HLH)
Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.
Our Promise To Histio Heroes And Angels
This photo from a LIVESTRONG event says all that needs to be said about how we should approach the fight against histiocytosis and how we can honor the lives and struggles of those histio heroes and angels.
- THEY DIDN'T QUIT ... I WON'T QUIT!!!

Pablove Across America (Day 9) – Four Mothers to Children with Cancer
LIVESTRONG and ARTHUR
The Lance Armstrong Foundation has teamed up with ARTHUR, the award-winning children’s series, to create a special episode plus free resources that will help families and schools talk with kids about cancer.
In “The Great MacGrady,” Arthur and his friends deal with the cancer diagnosis of their favorite lunch lady — with the help of Lance Armstrong. The show premieres on PBS for five consecutive days throughout the week of October 19, 2009 – check local listings for broadcast times.
The Family Activity Booklet offers advice and ideas for how to talk with children when a loved one has cancer. In addition, two new LIVESTRONG at School K-2 lesson plans give teachers creative and innovative tools for the classroom. Order free class sets of When Someone You Know Has Cancer and download LIVESTRONG at School lesson plans at www.livestrong.org/elementaryschool.
Sunday, October 11, 2009
Histio Heroes and Angels
Matthew Diehl
Diagnosis Of Rare Blood Disease Saves Boy’s Life
Noleina
Students Brave Cold to Help Ill Classmate
Jessica Siedel
Teenagers With Life-Threatening Illnesses Share Special Weekend
We also wanted to take a moment to remember and recognize a brave histio angel who recently lost her courageous battle against histiocytosis:
Irelyn Rose Fredock (16 Months Old -- LCH)
Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.
Pablove Across America

On October 10, 2009, Pablo’s dad, Jeff Castelaz, along with his cycling coach, Rick Babington, will embark on a 3,100 mile ride spanning the entire US. They will start in St. Augustine, FL and in the course of 30 days on their bikes, make their way to Pablo’s grave at Forest Lawn Hollywood Hills in Los Angeles.
Pablove Across America is Jeff’s show of commitment to fighting kids’ cancer—and his need to wring out his soul of its sadness. Along the way, he’ll visit children’s hospitals to connect with cancer kids just like Pablo. He’ll promote cancer awareness on radio, television and in the written press. Anything to drive home the mission of the Pablove Foundation, and to keep Pablo’s spirit and boundless energy alive.
Pablove Across America is about standing up, hammering the pedals, speaking out and FIGHTING back—to raise awareness that kids get cancer, families need help and hope—hope not only to find a cure, but in the day-to-day grind of treatment.
Join the fight against children’s cancer. Support Jeff’s ride.
You can read more about Pablove Across America on the Pablove Foundation website -- http://www.pablove.org
Boy's Fight Against Brain Cancer Inspires Superhero Comic Book

We all know that kids fighting cancer, histiocytosis and other life-threatening diseases are superheroes. We wanted to share a great story about about a brave little boy battling brain cancer who has inspired his own superhero comic book.
No one has ever told 7-year-old Dominic Osorio that he has brain cancer. Instead, his mother devised a story and made him the lead character. When Dominic undergoes surgery, chemotherapy or radiation, he is not a patient; he is the Dominator, waging war with an evil enemy that he calls a megazoid.You can read the original story in the Baltimore Sun -- http://www.baltimoresun.com/news/maryland/harford/bal-md.ha.dominic07oct07,0,4549865.story
His grandmother, Monique Spagna, recalled the day Dominic finished weeks of daily radiation treatments at Johns Hopkins Children's Center that required the Bel Air boy to wear a mask and remain motionless for what seemed an eternity to a child.
"He could not move, so he would change identities and be the Dominator battling an enemy he called a megazoid," she said. "His mother came up with this story to help him deal with it."
On the last day of treatment, Dominic followed hospital tradition and rang a bell to signal he was done, she said. "So many others were inspired," she said. "They said if this kid could do it, so could they."
Many have come to know the story of the indomitable child and joined his crusade. Dominic, who was diagnosed with cancer in 2007, has inspired not only the new superhero character, but a comic book with a strong possibility for sequels, an official proclamation from Harford County government and a fundraising effort for children's hospice.
Dave Anderson often met Dominic and his family at the Bel Air restaurant he manages. The child would arrive with the usual boyhood bumps and scrapes and would banter with Anderson about how the arm was broken or the knee was scratched. But when Anderson learned about the Dominator and how Dominic was battling for his life, he went to work on fundraising and something he never expected - a book.
"People need to hear this kid's story," Anderson said. "He is a real motivator. All kids are our motivators, and they are what is important."
The more he heard about Dominic's trials, the more determined he was to help him and other children with cancer.
"Dominic is an awesome kid, who never got scared at what he had to go through," Anderson said. "He really is the superhero in this story. This one little boy has touched many lives."
Anderson helped create "The Dominator" character and a comic book tailored to children. He contacted Getz-Calandra Productions, which put together the illustrated book with a story line based on Dominic's struggles.
"We took a simple approach with the story and made it readable especially for kids in the hospital," said Tony Calandra of Abingdon, who also works as a physical therapy technician. "We have had big interest already. If this character takes off, there will be a second issue."
Anderson paid nearly $9,000 to design, create and copyright the Dominator and to publish 2,000 copies of the book. About 1,000 copies have been sold since the $5 book came out last month, with proceeds from sales benefiting children's cancer research.
"The more I got into this, the more I knew it was a powerful thing," he said. "I am dedicating 'The Dominator' to making sure that kids like Dominic have everything they need."
Anderson has organized several fundraisers, the most recent last month centered on a superheroes theme that included a proclamation of Superheroes Day by the Harford County executive. Officials used the event to focus on childhood cancer and to recognize "the unselfish and countless acts of heroism that people demonstrate every day in supporting children" who are fighting for their lives, the proclamation says.
The Dominator, in a red bodysuit with a large navy blue D on his chest, appeared with more well-known characters at that event and at several other fundraisers. Anderson in Dominator regalia has visited Dominic at Hopkins, along with Paul Day, who donned Batman attire.
Day, as Batman, recalled how he had stopped in to see Dominic at home last Christmas and what he whispered in the child's ear.
"I told him that I knew he was the Dominator, a superhero just like me," Day said.
The tumor continues to grow in Dominic's brain, despite the best efforts of his doctors. His mother, Nicole Spagna, is keeping a round-the-clock vigil at his side at Hopkins.
"His eyes are not open, but he knows we are all there," said Monique Spagna. "He has been fighting for two years, and he is still fighting. He always told us to believe. We are still hoping there is one more treatment to try."
Nicole Spagna said she wants her son's story to help other children coping with cancer. His grandmother has vowed to work to establish a local hospice dedicated solely to children and their families, and she will continue to raise funds for children's cancer research.
"In my heart, I know Dominic has made a big difference and has shown that he is a caring person," Monique Spagna said. "I am still praying for a miracle for him. I believe in miracles."
Friday, October 9, 2009
Remembering Liam
A service is being held tomorrow to celebrate the life of Liam Schulze, a brave histio warrior who recently lost his battle against HLH. We were lucky enough to meet his parents (Chris and Michelle) at Hike for a Cure where they hiked to the top of Half-Dome in their son's honor.
Please take a moment tomorrow morning to remember Liam and the brave histio angels who have left us far too soon.
Liam Christopher Schulze, born January 2, 2008, earned his angel wings at 20 months of age on September 9, 2009. Liam fought an extremely difficult battle against a rare blood disease, Hemophagocytic Lymphohistiocytosis (HLH) and complications post bone marrow transplant. Liam's life, although short in days, was very rich in love, smiles, and memories we will cherish forever. He touched all who knew him and reminded us all the true importance of life and that each day is a gift. We are honored to be his parents and to have been on this incredible journey with him. Liam will be in our hearts forever, and his amazing strength and spirit will continue to inspire us each day. He truly was our little powerful warrior.
Liam Christopher is survived by his proud parents, Christopher and Michelle Schulze, Colorado Springs, Colorado, grandparents Frank and Rose Ann Podminick, Colorado Springs, Colorado, Don and Connie Schulze, Boca Raton, Florida, and Stan and Gayle Slezak, Wyoming, Pennsylvania, uncles and aunts Jeff and Kim Kleiss, Chris and Sabrina Slezak, and cousins Zachary and Juliana.
Family and friends are invited to join us for a service to celebrate Liam's life at Holy Apostles Catholic Church, 4925 N. Carefree Circle, Colorado Springs, Colorado, October 10, at 10 a.m. There will also be a memorial mass at Sacred Heart of Jesus Church, 529 Stephenson Street, Duryea, Pennsylvania on October 17, 2009 at 10 a.m.
In lieu of flowers, we ask that donations be made, in Liam's honor, to the Histiocytosis Association of America, 332 N. Broadway, Pittman, New Jersey, 08071, 800-548-2758, to help continue the research of HLH and search for a cure. We also ask our community to consider donating the gift of platelets, blood, and bone marrow.
Saturday, October 3, 2009
Histio Headlines
Karleigh Hobart
Family’s Loss Emphasizes Need For Marrow Donors
Cole Kambeitz
Ryan Shifflett
Montclair Mom To Tackle Yosemite Trails For Her Son
Oscar Perez
Local Supermarket Chain Holds Bone Marrow Drive For Toddler
Grace Urban
Rare Disease Only Strikes Five Children Out Of Every Million
Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.
LIVESTRONG Day
Today is LIVESTRONG Day, a global day of action to raise awareness in our communities about the fight against cancer.
Today is also the 13th anniversary of my own cancer diagnosis. Like most 25-year-olds, I was fearless, ready to conquer the world and, because I was in the midst of changing employers, without health insurance. I was lucky. One of my sponsors, Oakley, stood up for me and threatened to take all of their business elsewhere if their insurance carrier refused to cover me. Without their help, I might not be alive today. Or I might be completely broke, still trying to dig my way out of a massive pile of medical bills.
That kind of luck shouldn’t have anything to do with whether the 12 million people around the world who will be diagnosed with cancer this year go broke trying to get the treatment they need to survive.
Cancer is projected to become the world’s leading cause of death next year. More than 28 million people around the world are living with cancer today and, without greater progress in detection, prevention and treatment, that number could triple by 2030.
If the cancer epidemic continues to grow as predicted, it will have a devastating effect on world economies. A new Economist Intelligence Unit study commissioned by the Lance Armstrong Foundation pegs the global economic impact of the disease at more than $300 billion in 2009 alone. In coming years, developing nations will be forced to spend increasing amounts of money on treatment and on public assistance to patients. In the U.S. and Western Europe, where aging populations are already straining public health costs, the rise in cancer means an ever greater percentage of national budgets will be devoted to healthcare.
Friday, October 2, 2009
Hooray For H4AC
CONGRATS and many thanks to Ron & Colleen McPeek Bechtold for their tireless efforts and endless enthusiasm in making this event such a HUGE success on so many different levels.
We had an amazing weekend and were able to meet many wonderful histio families who each had a story to tell about their hsitio experience -- some uplifting, some hopeful, some heartbreaking. We were truly honored and proud to be hiking with these families and in support of histio heroes and angels.
We also were privileged to be able to participate in the Saturday evening ceremonies and introduce our friend and world-renowned histio expert -- Dr. Ken McClain -- who shared exciting news about breakthroughs in histio research which hopefully will lead to better treatments in the near future and eventually a cure.
THANKS to everyone who supported TEAM HIKING FOR HISTIO HEROES!!!
On a personal note, this weekend was made even more truly special and unforgettable when my girlfriend Leslie accepted my marriage proposal at the top of Half Dome.
What a great weekend!!!!
Hike For A Cure 2009 -- The Colby Clan
We joined The Hike For A Cure in 2006. It is a one day hike to the top of Half Dome, Yosemite. It is a grueling one day, 18 mile roundtrip with a 4800 foot ascent to honor the children, adults and families affected by histiocytosis. It is meant to symbolize the hardships faced during diagnosis, treatment, living past treatment and loss of loved ones.
You see, many affected with HLH die before they are diagnosed. Much of the knowledge to treat our daughter came from other children who past away. There are no public funds for research as histio affects too few to garner attention from the public resources. It is through grass roots efforts such as the Hike For A Cure that all fund for research are derived.
Once a year we are blessed to share the wonders of Yosemite with families from across the country. In this one weekend we commiserate, mourn, laugh, cry, recharge, get engaged and connect with our family that is histio.
The Colby Family has participated in the hike for the past four years. It is during this weekend this year that we were privileged to see a portion of the Ken Burns film. For our family Yosemite is the one place in the world we feel everything is right.
Its beauty is the reminder of hope we carry all year, through many unanswered questions.