I Didn’t Sleep

Regarding the White House response to our petition:

I didn’t sleep much last night. First the proclamation came out with all it’s baloney as so accurately pointed out by Joe above and to add insult to injury, Ms. Aniskoff … the Deputy Asst to the Pres, the Director of Public Engagement needs a new job.

To first deny the position and then say, “we’re issuing a Presidential Proclamation to help amplify YOUR important cause” made me see red. A Presidential Proc is nothing this administration came up with and again as Joe indicated 29 states did this much earlier not at the midnight hour of August. Then Ms Aniskoff, obviously not choosing her words very carefully made me crazy with her “YOUR” important cause thought.

This is not my cause, we lost our grandson after a short agonizing battle with pediatric cancer. What we learned about the realities and inequities of pediatric cancer have spurred us into action. We cannot save Declan, Talia, Gavin, Haley, Connor, Charlotte, Trey, Nathan … oh God the list goes on and on and 7 more babies will join them today, tomorrow and everyday into the future if we don’t do something. To insult children, brave warriors battling cancer, and the American people by having a representative of the WH say “YOUR” cause is inflammatory to say the least. This is a battle fought hard, and every minute of every day by children across this country, kids enduring everyday what Ms. Aniskoff could not imagine.

Finally for Ms. Aniskoff to end her ridiculous and demeaning statement with the “AND” the President continues to meet with cancer fighters … that “AND” rings so loudly in my mind as though, haven’t we done enough but just to show you we’ve done plenty, he “continued to meet with cancer fighters.” She didn’t say PEDIATRIC cancer fighters because I’m sure that Jack is the only child he has met with, another indication that she is clueless about this issue.

The President met with amazing warrior Jack, I’ll give him that, as Joe points out, a photo op — but what did he do after that meeting is the important question I would have for him. Did he call his budget office and ask for facts on funding of pediatric cancer research in his budget? Did he ask OMB to convene a meeting with the heads of HHS, NIH and NCI to discuss why they haven’t increased pediatric cancer research as requested in Senate report language for the past 2 years? Did he ask OMB to grill these heads of agencies on their statistics and budget? This would mean more in terms of commitment to families — and I don’t want this to be OUR cause, I want this to be a cause this country is dedicated to — saving kids.

Providing research that means that 20% of kids are not terminal on diagnosis, research for the deadliest childhood cancers — AT/RT, DIPG, neuroblastomas, childhood cancer research that will provide cures, treatments, pediatric protocols and more. Providing research that delivers pediatric protocols and less invasive treatments that means that 60% of children diagnosed will not suffer life altering impacts of treatments largely because treatments are a guessing game using adult protocols without research.

I’m furious. I sent an email to the WH last night, but I have sent many. My next approach will be to try and meet with OMB. I start on Tuesday, because obviously the WH is getting bad information and thinks everything is great. NIH and NCI don’t care and because kids have no lobby, no voice, no money to help with re-elections Congress is only mildly listening, without any real action or interest, even when it hits one of its own. I fight because of what I’ve seen children endure, unnecessarily, we have the capability to heal our kids without the cut, burn, poison guessing game we use in so many pediatric cancer treatments. We can do better for our children, we owe them that, we are their caregivers, protectors, parents. I don’t believe there is one woman, mother, grandmother, aunt in this country that would prefer that we put pink before gold, especially if there was awareness of the facts.

I’d love to have an opportunity to explain to Ms. Aniskoff what commitment means. She obviously doesn’t understand the meaning of the word. She and her fancy title have not done any favors for the President or the children of this country.

Donna Carmical

One Response to I Didn’t Sleep

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