The diagnosis of DIPG (Diffuse Intrinsic Pontine Glioma Disease ) is hearbreaking. DIPG is a tumor located in the middle of the brain stem, which is the bottom most portion of the brain that controls many of the body’s vital functions and connects the cerebrum to the spinal cord. This tumor cannot be removed surgically. DIPG can be treated with radiation and chemotherapy, but usually recurs within 2 years and progresses rapidly. Currently, there is no cure for DIPG, however there are a number of ongoing clinical trials utilizing experimental chemotherapy delivered concurrently with radiation therapy that have been successful in inhibiting tumor cell growth and extending time before recurrence. John was enrolled in a clinical trial underway at St. Jude.
Many believe that DIPG holds the secret to curing most, if not all, forms of cancer. We have joined in the efforts of The Cure Starts Now Cancer Foundation one of the only cancer foundations dedicated to finding a “homerun” cure. However, this particular form of Pediatric Brain Cancer research receives little to no federal funding since there are so few kids diagnosed on a yearly basis (approximately 300). No parent should ever be delivered this devastating news; we are all committed to make this a reality. The money raised through The Cure Starts Now is used in the best possible manner, minimizing wasted spending and fighting cancer on knowledge and research, not just the numbers.
The following are web links about St. Jude’s Research and The Cure Starts Now:
Weblinks about dealing with crisis and resources for dealing with grief in families and with children:
- Dougy Center – The National Center for Children and their Grieving Families
- – Death impacts at school
- – Kids and funerals
- Tips to Help Support A Family with Childhood Cancer
- Advice from DIPG Parent
Weblinks to common stories of fights against DIPG and childhood brain tumors: