Giving Thanks For Helping Histio Heroes

We wanted take time to recognize and express our enduring gratitude to Dr. Ken McClain and the Histiocytosis Program at the Texas Children's Cancer Center for really making a difference in the fight against histiocytosis.

The Histiocytosis Program at the Texas Children's Cancer Center, is associated with Texas Children's Hospital, the largest pediatric hospital in the United States, and serves as the pediatric program of The Dan L. Duncan Cancer Center, an NCI-designated cancer center at the Baylor College of Medicine

The Histiocytosis Program Director, Kenneth L. McClain, M.D. Ph.D., is the past president of the Histiocyte Society and has been treating patients with histiocytic disorders for over twenty years. He sees over 100 new LCH and HLH patients per year, and has over 400 active patients in the clinic. Dr. McClain is one of only a few physicians in the world researching a cure for children with histiocytosis.

The Histiocytosis Research Laboratory, through the dramatic increase in the number of patients, has been able to develop and expand clinical trials of innovative therapies and leads the world in research of LCH, HLH, JXG, RDD, and ECD. The clinical experience developed, coupled with the basic research studies involving with rare biopsy and other tissue samples, provides the unique opportunity to establish clinical and biologic correlations that no other center in the world can.

The Histiocytosis Program needs additional support support to expand its ongoing research efforts and to pursue additional state-of-the-art investigations that will lead to discoveries which will expedite development of more effective and innovative therapies for histiocytic disorders.

Please contact Mike Golding or Don Johnson if you are interested in learning more about how you can help Dr. McClain in the fight against histiocytosis.

Histio Heroes And Angels In The News

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis and histio angels who continue to inspire others :

Jacob Baltz
Pocahontas Parish Rallying Around 1-Year-Old And His Family

Gavin Shaw
"Superhero" Gavin Inspiration Behind 2 Day Blood Donor Clinic

Enda Walker
X Factor Stars Help Sick Children

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.

Liam's Lighthouse Foundation Holiday Ornament Fundraiser

We wanted to share some information from Michelle Schulze about about a great holiday fundraiser being organized to support Liam's Lighthouse Foundation, which has been started in honor of her son Liam who recently lost his courageous battle with Hemophagocytic Lymphohistiocytosis.

I have been working nonstop on Liam’s foundation. I have started the ball rolling with all the necessary paperwork. I haven’t had a chance to get the website off and running yet because I have been diligently working on Liam’s first fundraiser for his foundation. I thought since Christmas was right around the corner, we would start with a small fundraiser.

I have made lighthouse ornaments in honor of Liam’s Lighthouse Foundation. I thought when people would see the lighthouse hanging from their tree this year and every year from now on, they would remember our brave little warrior and how he is still shining even though he is now an angel in Heaven. I have spent many, many hours making them and really have put my heart and soul into them. Nothing would make me happier than to receive requests for these lighthouses, knowing that Liam’s story will be apart of their Christmas tree.

Knowing that people will continue to remember a 20 month old little boy and the number of lessons he has taught us all, brings tears to my eyes. Not only is it a fundraising opportunity for his foundation, but I would feel beyond honored that these lighthouses will be hanging in others’ homes.

The lighthouse ornaments will be sold for $7.00 each and are tax deductible. If you would like an ornament, please send your check payable to:

Liam’s Lighthouse Foundation
5818 Charlois Ct.
Colorado Springs, CO 80922

Rainbow Radiothon

The WDOK 102.1-FM Rainbow Radiothon was held on November 12 and 13. This year's radiothon raised raised $325,011 to benefit the family and child life programs at Rainbow Babies and Children's Hospital.

In its seventh year, and first with WDOK, the Radiothon has raised a total of $2.5 million in donations. Radiothon celebrates all the kids at Rainbow who are fighting difficult health challenges, as well as the generous people who have supported these children through their donations, time, and passion.

Tanner's Obituary

We are posting the following obituary that was written by Tanner's father, Alexis Bertauche, and appreciate his family allowing us to share his story.

It is with much sadness that we announce the passing of our son Tanner. Tanner was born on July 8, 2005 at Renown Medical Center and passed into God’s arms November 17, 2009 at Children’s Hospital in Oakland, CA after a long battle with a rare histiocytosis disorder called Juvenile Xanthogranuloma. Our angel on earth is now our angel in heaven. Tanner is survived by his parents Wendy and Alexis, two brothers KJ and Bodie as well as his loving grandparents, uncles and great grandparents.

Tanner lived an inspired life never letting his illness get in the way of his spirit that affected everyone who met our angel. Over the course of his illness Tanner converted many strangers into friends and inspired his doctors and nurses with hope and faith as he fought bravely and without complaints against a disease that has no established treatment protocol. Tanner always found a way to bring a smile to our faces.

Our family would like to thank the Reno community for their generous support over the past year and a half. We also want to thank the doctors, nurses, and social workers at Children’s Hospital Oakland, Renown Medical Center, Saint Mary’s and Lucille Packard’s Children Hospital at Stanford for the exceptional care of Tanner as well their belief in our son.

There will be a celebration of Tanner’s life at Our Lady of the Snows church in Reno on Friday, December 4thstarting with a tribute at 1pm followed by a memorial mass at 2pm with a reception at the parish center following the mass. All are welcome to come celebrate the life of Tanner Bertauche. In lieu of flowers donations can be made to the Tanner Bertauche Medical Fund at any Wells Fargo Bank location. This fund will become the seed for The Tanner’s Moon Foundation to help other families who are fighting histiocytosis.

Histio Heroes In The Headlines

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

Alex Johnson
Boy Battles Nine In A Million Disease

Brittany Kaufman
Benefit Scheduled For Four Year Old

Miranda Lindenberg
Faculty Member's Child Diagnosed With Rare Blood Disorder

Eduardo Rivera
Response Slow To Help Child

Liam Silva
Over 300 Attend Bone Marrow Drive

We also wanted to take a moment to remember and recognize a couple brave histio warriors who recently lost their courageous battles against histiocytosis:

Tanner Bertauche (4 years old -- JXG)

Elijah Cullison (10 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.

Mommys Shoes

The following poem was borrowed from Kathleen Brown-Blake, a histiocytosis mom. This poem is a very sweet way of expressing being a parent of a child with any life altering medical diagnosis. More importantly, it is a gentle reminder that we all have our hardships.

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!

Flying Horse Away Program

The Flying Horse Away program sends children with serious illnesses to other Hole in the Wall Camps until Flying Horse Farms opens in Fall 2010.

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 Biorkman was diagnosed with neuroblastoma in 2007, when he was 3 years old. He went into remission, but then relapsed in September 2008. His family is not expecting him to make it to Christmas Day.

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.

Histio Heroes and Angels

We wanted to highlight several recent stories about brave histio warriors and angels who have battled or who are continuing to battle against histiocytosis:

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

We wanted to share an update from Kasey's Krafts, Inc. about the wonderful work that is being done to help children at The Children’s Hospital in Denver, Give Kids the World and Ronald McDonald House Denver.

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

You can read more about Kasey's Krafts and how you can help on their website -- http://www.kaseyskrafts.com -- or by joining their Facebook group -- http://www.facebook.com/group.php?gid=150184964533

Notes Left Behind

Notes Left Behind is the true story of a six-year-old girl named Elena Desserich who left behind notes for her family when she knew she was dying of brain cancer.

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

Happy Birthday to my angel Sydney!!!

You are missed by many, loved by all and will never be forgotten.

You have inspired so many people to help other brave warriors.

You are many things but you will always be my little girl.

Love, Daddy.