IMPORTANT. Click here and scroll down to read Sandy's Letter

Hey All,
It has been 19 months and 8 days since my son was alive. It seems the whole world should have stopped moving to acknowledge the loss of a child but it did not. In fact - we continue to lose children to brain tumors each month and to other horrible illnesses that most of us have never even heard of. I remain amazed that so many young lives are lost and yet brain tumors are considered rare. Just in the past 10 days we have lost three 4 year olds to DIPG (Diffuse Intrinsic Pontine gliomas) , a 22 month old to a rare and horrible monster, and we have a beloved 13 year old on hospice approaching the end of his GBM (glioblastoms multiforme grade 4) journey. I am amazed as well at the lack of education among our pediatricians - children, like Stefan, continue to be misdiagnosed for months on end. So do adults but my soapbox is on children today.
Many of you may have seen the show Friday night Stand Up To Cancer. It was a good show and brain tumors were given some air time - GBM, medulloblastoma, and one doctor who didn't identify his bt type. Sadly - on their web page brain tumor research is not on their agenda and out of 20 doctors on their Board only 1 (At Shands in FL - hem/onc) has any experience with pediatric cancer period - and not with brain tumors. Sad - we have a LONG way to go. Brain tumors are not like and cannot be treated like other forms of cancer. Because of the location in the brain even non-malignant brain tumors can kill - depending on the location, by pressing on or against vital functions. Because of the location they can be very difficult to diagnose and many can't even be biopsied to make an affirmative diagnosis. Because of location many brain tumors - and MOST brain tumors affecting our children - cannot be removed. Because of the location chemo cannot access the tumor tissue without affecting healthy tissue - killing off good brain and leaving deficits. Most substances cannot cross the Blood Brain Barrier period. There is NO CURE for glioma brain tumors. And other brain tumors that may have a better prognosis - this does not come without a price. Children who are fortunate to have a brain tumor that can be removed and will respond to radiation (yes, irradiation of a child's developing brain) must live with deficits that will continue to progress over time. And while these deficits present a challenge for the family and the child they also present a challenge for the schools they may attend. Many are treated the same way as children with developmental or emotional disabilities. They are different. And the needs of our brain tumor children may not be met as long as awareness is not pushed and our society remains uninformed.
Ok - off the soapbox - Below is a little information about the month of September:

(SEPT. IS CHILDHOOD CANCER AWARENESS MONTH

* Each school day, 46 children are diagnosed with cancer.

* One in 330 children will develop cancer by age 20..

* In the U.S. almost 3000 children die from cancer each year, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.

* In the past 20 years only one new cancer drug has been approved for pediatric use.

* Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

* September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized.

*The government recently cut the budget for Childhood Cancer Research.

*Currently there are between 30-40,000 children being treated for cancer in the US.

*As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year

Chances are if you know our family you know someone or will know someone else who has been affected by cancer. Please - educate when you can. As long as we think it isn't a problem it will continue to be a major problem - we just won't see it. We have way too many children dying from cancer and no one knows why and no one is looking for the "why".
PS - The basement lab is about 50% completed. We still miss Stefan with every heart beat and every single breath we breathe. The energy is finally beginning to return - it is time to address my son's loss and this brain tumor issue with gusto. Mommy On A Mission is in the room .....
B'Lynn