The month of September is here. For most families, September is all about sending their kids back to school, the end of summer and start of a new academic year. It’s about getting back to a routine that will probably last 10 months till it is summer again. It’s about getting the kids ready for school in the mornings, soccer practice after school or ballet or music lessons in the evenings.
But for families affected by pediatric cancer September is known to be the Childhood Cancer Awareness month. What does the term childhood cancer awareness mean to these families? Unfortunately I know exactly what it means….it’s been a year now and I will be aware of it for the rest of my life.
Until last September, I never gave pediatric cancer a second thought. Yes I was aware of pediatric cancer but that awareness seldom resulted in any tangible action…maybe because it did not affect me and my family directly. However all that changed completely on September 1 2012 , when our beautiful 5 year old Zoey was diagnosed with a rare but aggressive brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).
I still remember that day very clearly. Zoey had an MRI around 3 pm on that Saturday, and we had been waiting for the results to come in. She had been totally normal apart from the double vision and a bit of clumsiness when walking. These symptoms had manifested themselves quite suddenly in a matter of weeks and so we had demanded an MRI at her pediatrician’s office the previous day. The pediatric neuro-oncologist came to see us around 6 pm that evening. He took us to small room and made us take a seat, especially since I was 28 weeks pregnant with our son. He then showed us our daughter’s MRI pictures and told us the worst possible news that any parent could receive. I couldn’t look at the pictures at the time. We were told she has a brain tumor called DIPG and she had about 3 to 6 months without radiation and about 6 to 9 months with radiation. Surgery was out of question and chemo was not known to work on this type of aggressive brain cancer. His words loud and clear ‘take her home and enjoy the remaining time with her’. I couldn’t believe my ears. I was hoping that he would somehow say it was a mistake and he was seeing someone else’s MRI report. But that did not happen. We went back to the hospital room where Zoey was busy chatting away with her grandparents and the nurse. I remember thinking, how could she be so sick and we never knew a thing before. She was a normal 5 year old who was excited about starting kindergarten the following week. How could she have a tumor in her brain?
DIPG has a zero percent survival rate. Yes ZERO. It has no known cause and definitely has no cure. And it has been like this for over 50 years. About 200 to 300 children get diagnosed in the US every year and almost all of them pass away anywhere between 2 weeks to 12 months from diagnosis. The reason it has no cure today is primarily due to lack of funding needed for the research. Only 4 percent of total cancer funding goes to pediatric cancer…out of which DIPG gets next to nothing. Pharmaceutical companies do not invest in the development of drugs and research for cancers like DIPG. Why? Because it just isn’t that profitable as compared to investing in drugs for cancers in adults. The numbers don’t make sense to them.
Irrespective of the month of the year, yes, I am well aware of pediatric cancer. I am aware that our girl passed away in our arms, 12 weeks after diagnosis because we couldn’t offer her any treatment. I am aware of the finite number of videos and pictures of my sweet baby girl that I will be watching over and over again, for the rest of my life. I am aware of the sadness and grief that completely takes you over almost every day and sometimes several times a day. I am aware that Zoey’s baby brother will never know his sister that way we did. He will hear about her and we will show him the videos of her singing to him, but it will never ever be the same. So I am well AWARE and hope no other parent has to go through the despair we did last year.
Since September is here and we are talking about pediatric cancer awareness, I urge you to consider doing something more for these little kids. Maybe by making a monetary donation for cancer research/treatment, or palliative care, or by participating in a race…or by sending a card or gift to a child suffering from cancer. Ask these families how you can help. You will be amazed at how your little gesture and show of support will help them survive the nightmare that they have been forced to go through.
Lastly, if you haven’t done it already, please consider giving to DIPG research at Stanford (Zoey’s DIPG research fund) :
Here is a picture of my Zoey just before we became AWARE of pediatric cancer :
Link to Zoey’s dad’s interview about DIPG.