Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, March 17, 2011

What I know

I think my "shooting," "interview," "Thank-you note," what ever it was to the American Cancer Society went well yesterday.

I say "I think" because it was done the day after receiving bendamustyne, my brand new to-me, never tried before chemotherapy.

So I'm not sure how with it I was. I remember being complemented on my "sound bites" and having the director tell the interviewer to let me "just go with it." My Dad didn't come rushing in waving his hands saying "no, stop, now, you can not say that."

However, if we got too far off the track of the 2 million dollar maximum caps that had been removed I wasn't as affluent, since that was my chosen area of expertise.

I've almost hit it twice now. I even let some tears shed.

I hate that. Crying, publicly, when my brain feels like mush.

But I had my very own make-up person who took control of making my face pretty. The interviewer would sometimes call for my nose to be "powdered," and I was the star for the day.

It's exciting that my situation is getting so much attention. I just hope that people understand that my situation is not unique, that a young RN and aerospace engineer with one child and everything going for them in life was stopped in their tracks from accomplishing their dreams due to the high cost of medial care in this situation.

Take Wyatt, for example. Wyatt was a regular rambunctious boy, having to be told to stop climbing even before the age of one when he was suddenly lost to the world of autism.

In the words of Wyatt's Father, Dave Snyder, "Wyatt was suddenly in a silent world where he would spend hours stuck on repetitive motions if we let him. He no longer had any eye contact with us, and stopped talking at all. In fact, he became very silent, and rarely even babbled. He would spin in circles waving his hand in front of his eyes, or push a matchbox car back and forth two inches from his eyes. 

He would scream bloody murder when we tried to break him away from whatever he was stuck on. His appetite changed, and he became extremely picky. He started losing weight as he began to throw up completely undigested food often. He lost the ability to have a bowel movement on his own."

Before Autism
"We soon went from being totally ignorant about Autism, to learning that this new epidemic is primarily a set of symptoms related to toxins damaging the gut. Since the gut is tied directly to the developing brain of a child, all sorts of things start going wrong there."

The Snyder's tried everything to keep Wyatt's gut safe in hopes of maintaining is brain function. After going through $20,000 in savings, realizing they were just putting bandaids on a systemic problems, heir research lead them to a possible cure!

Seventy children had all ready found their way back to optimum "normal" functioning, and the Snyder's wanted their Wyatt to be one. After a year of praying for the finances, they received a grant that would pay for Wyatt's monthly cost. 

Treatment was started immediately, March 10, 2009.

The family was overjoyed by how quickly Wyatt progressed in this program. Between 5 and 6 months Wyatt has progressed to the point where some of his preschool teachers couldn't believe he was the same child.

Then, In Late August 2010, due to the same recession that had cut Wyatt's family's income in half, Wyatt's grant was eliminated. The life saving treatment that had taken him from a shaking, rocking 3 year old in the depths of autism, was suddenly stopped. Wyatt's only hope to continue the next few months of treatment are donations, and donate big. Who could you not cherish this beautiful young man.
After Austism
Would we all love to see what he achieves in the future?

And Just how can you do that? go here: and whatver you were thinking about giving to me, give to Wyatt. He has great donate buttons all over, and charitable tax deductions up to $250 can be done with out a receipt. If you want a receipt for credit over that amount, then you'll have to ask for the social security number of the patient.

 I am not a lawyer. This is not tax law 101. This is what I think I know.

1 comment:

Loraine Ritchey said...

You are my star Hilary - as I have said often your strength and determination in all you do leaves me in awe Loraine