New DIPG Clinical Trial Sounds Promising

Richard posted a link on Facebook about FDA approval for a new clinical trial specifically designed for DIPG through the Weill Cornell Medical College.  According to the article:

"This new approach represents a ray of hope for families facing the diagnosis of DIPG. This rare brain tumor has been uniformly fatal, made all the more heartbreaking by its propensity to strike very young children. The tumors are inoperable due to their ill-defined borders as well as their position in the delicate pons area of the brain stem. Radiation has been the standard approach, but it is not a cure and usually extends life only by a short time. Some 200 to 300 children in North America a year die from DIPG - usually within months of their diagnosis.

Unlike other critical diseases of childhood, DIPG has suffered from a lack of funding that has meant a complete lack of progress in survival rates. Over the past few decades, survival rates for medulloblastoma have reached 70 percent; for acute lymphoblastic leukemia the rate is now 85 percent. Over that same time, survival rates for DIPG have remained essentially at zero, as major foundations directed their support toward more common conditions. It is Dr. Souweidane's hope that this innovative clinical trial will be a major first step in creating a survival rate for DIPG for the first time."

This is potentially HUGE for the DIPG community. I am praying that this works the way they are hoping. I also pray for all the families who are accepted into the trial. No family should have to experience what we've been through.

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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Childhood Cancer Awareness Month 2011 - Day 1

Caleb,

It's time for me to do my part to spread the word. Funding is desperately needed to keep other families from going through the heartache and heartbreak we have. So, it's time for my big month of "Awareness" plugs to my followers. Hopefully, they will pass it on and help spread the word, too. Together, we can make a difference and maybe even save a life!

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And now, for our scheduled Public Service Announcement:

• Each school day, 46 children are diagnosed with cancer
• Each day, 7 children DIE from cancer (Caleb was one of them)
• One in 320 children will develop cancer by age 20
• Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
• The overall incidence rate for childhood cancers has increased significantly by almost 33% during the period 1975 to 2001
• Cancer treatment can cause serious side effects that may last a lifetime
• DIPG, an aggressive brain-stem tumor seen in children, has NO known cure. It is 100% fatal. (This is the type of tumor Caleb had.)
• Neuroblastoma is the most comon solid tumor in children, there is no known cure for relapsed neuroblastoma, cure rates for children over the age of 1 at diagnosis are less than 50%.
• Relapsed Acute Lymphoblastic Leukemia carries a poor prognosis, 10%-50% survival
• Leukemia is the most common form of cancer in children
• Every year since 2003 federal funding for childhood cancer research has been CUT.

STOP CHILDHOOD CANCER!

The gold ribbon is the symbol for childhood cancer awareness, September is Childhood Cancer Awareness Month.

These are just a few of the children who have been diagnosed with cancer. Some have just started their fight, some are in the midst of the battle, and some have finished their journey.




Please help make a difference in the life of a child. For more information on how YOU can help, go to Cure Search.

Also, Caleb's memorial fund is still set up at Children's Hospital in Dallas. All donations made to his fund are being directed to the Center for Cancer and Blood Disorders (CCBD) where Caleb was treated. The wonderful CCBD staff is helping to save lives every day. I applaud their efforts and say, "Thank You!"

Please make checks payable to: Children's Medical Center
(in the memo space put: "in memory of Caleb Huffines")

You can send donations to:
Children's Medical Center
Attn: Kathy Friend
2777 Stemmons Frwy Suite 700
Dallas, TX 75207


Thank you!
Angela, Richard & Caden

Caleb, you are always in our hearts and loved to infinity and beyond!