As Elizabeth and I got ready for clinic today we felt love in the air. I love waking up next to her. I love that I get to brush her hair again! I love that she grabs my hand to hold at any chance she gets. I love the feeling of her hand in mine even if it does tremor terribly today. It is her hand. It is her warm, soft, gentle, loving hand that I, her mama, get to hold all day if she will let me. We walked into clinic today holding hands and sporting everything red and pink! Elizabeth had her basket of puckered up lip lollipop treats ready to hand out. As always she had a smile that would sparkle for miles and a personality that makes all the doctors and nurses giggle when they see her. Just moments before the doctor walks in, Brooke glances over at the wall. Hanging there (all over the clinic actually) is a notice to families. THERE IS A METHOTREXATE SHORTAGE! Our doctor walks in and confirms that they have about a three week supply of the chemotherapy drug, Methotrexate, but after that, they are not sure where it’s coming from and patients like the love of my life, Elizabeth Brooklyn Blair, will not have this drug available when she needs it in 6 weeks. She will have to use a secondary drug that has proven to not be as effective.
Read this article
So I ask you, “How can this happen?” This is so “humming” UNACCEPTABLE! We are talking about life and “humming” death! Does anyone care about these kids? It is problems like this that I will never ever give up on this fight. These kids deserve so much better! They deserve the best, and what do they get in return?
13,500 children are diagnosed with cancer every year in the United States
1 in 5 children diagnosed with cancer will die.
Everyday, 46 school children will be diagnosed with cancer.
One in 300 boys will develop cancer before the age of 20.
One in 333 girls will develop cancer before the age of 20.
The incidence of invasive pediatric cancers is up to 29% in the past 20 years.
Pediatric cancer is the leading cause of death by disease among US children ages 1-14.
In 2009, only 4% of the National Cancer Institute’s budget was used for pediatric funding.
Young cancer patients often have a more advanced stage of cancer when first diagnosed.
The average age of death for a child with cancer is 8.
In 20 years the FDA has initially approved only one drug for any childhood cancer. Half of all chemotherapies used for children’s cancers are 25 years old.
Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social acitivities and eventually work.
Changes need to happen and they need to happen NOW! These are real children! Real families! REAL LIVES! If you turn your head the other direction and think for a second your child is safe, think again. The amount of children getting cancer is up. Think about if this were your son or daughter fighting for their life and they do not have the drugs they need to treat it. I can write all day about the problems in the world of childhood cancer until I’m blue in the face, but we need to Speak Now and inform others because if you don’t, how will you feel if the day comes (and I pray that it never does) when childhood cancer blindsides you like it did us. So today, my purpose on here is to inform you about what is REAL. I know. I’m living this nightmare. Elizabeth’s life and thousands of other children’s lives and the quality of their treatment will suffer because of it. So I will continue to fight. Elizabeth will continue to fight. The two of us will hold each others hands the entire way. It’s frightening on our own, but when you have the support behind you anything seems possible.
With love holding hands,
Elizabeth and her mama