To say that we are devastated and heartbroken is an understatement. We are exhausted, desperate, frustrated by this place that we are in. By the fact that so little attention is paid to children's cancer research - to finding a cure for children like Phoebe.
Phoebe has given over two years of her life to Leukemia. She has participated in clinical trials, we have grasped at straws of innovative therapy desperate to cure her and in turn, the National Cancer Institute has given us 4%. 4% of all funding is directed to the twelve different types of pediatric cancers. Pennies of every dollar raised by the American Cancer Society and Canadian Cancer Society go to help the children whose faces appear on their posters.
There are so many things that are just not right about this. It is not right that my daughter has only ever been given at best, a 10-30% chance of survival. That we have exhausted all forms of treatment and without another option, our sweet Phoebe who right now is jumping on her bed, will not survive. That only one drug has been approved for use in the treatment of pediatric cancer in over twenty years. That 1500 children will be diagnosed with cancer this year in Canada. That today in the US, seven children will die from their disease. That so many children, despite being cured, live with devastating long term side effects. Side effects a result of the twenty year old and often multiple year long protocols these kids are given for treatment.
What else is there to do, however, but move forward? We will pound the pavement, continue to search for a cure, shout it from the rooftops that we need attention to be paid and money to be allocated.
We are not giving up. We are hoping that as time passes something else will surface. A door will open. We are holding on tightly to hope. The hope that shines brightly in Phoebe's smile and feisty ways. She is mighty.
Thank-you to Monkey Rock Music for the great show last night. Phoebe loves her new shirt.
I have been following your blog and up until now have been silent. I have to tell you that she is the most brave little munchkin. She is beautiful and bright! I understand your frustration-I volunteer at City of Hope cancer hospital in Duarte,, Ca. and see first hand the lack of funding put toward pediatric cancer research. I pray for your beautiful family and wish I was closer to smother your girl with love!
ReplyDeleteI'm so so sad to read that. So unfair... don't give up... I pray that you will find a new protocole or trial... xxxxxxxxxxxxxx
ReplyDeleteOh those statistics are just devastating :( If anybody deserves a chance, the best possible chance, at beating this disease and given the chance to LIVE, it's the children, no? And they suffer through these treatments and discomfort and still manage to smile at every chance they get. I think everybody needs to spend some time in a pediatric cancer ward and maybe then more voices would speak up and demand more for our kids. It's so disappointing. Praying for your family and hoping that Phoebe kicks this monster of a disease square in the ass.
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