Wednesday, January 7, 2009

a belated thank you


When leaving for Florida on Christmas morning, I posted a fairly long piece about going to see my mother who is suffering from a disease called Myelofibrosis, which is a myeloproliferative disorder that some of the literature has linked to Leukemia.

By the time we arrived in Florida, approximately 17 hours later, I had several very moving, inspirational, and supportive responses from many people on this blog.  

One of the posts encouraged me to share my blog with my mother, which I did, and I am happy to report that it brought tears to both my father's and mother's eyes to see such nice comments and well-wishes written by strangers.  This post is to say thank you.  I can't express how grateful I am to have such thoughtful people writing in.

And one other thing happened.  Out of the blue, a lady named Pat contacted me through the blog (you can see her comment under the blog post "Mom's Christmas").  She indicated that she has been fighting MF (Myelofibrosis) for twelve years and she lives in Florida.  She asked that I contact her privately.  Well, I was skeptical, so I sent her an email through a created google email account devoid of personal information.  She responded, left me her phone number, and I called.

It turns out that this kind lady found my blog while googling writings about MF.  It also turns out that she helped pioneer a website and support network that has now grown to over 2,700 people from over 30 countries.  Seriously, what are the flipping odds!?!

Talking to Pat was a blessing.  Because MF is so rare, very few doctors know how to treat it. Rather most doctors do what's called "watch and wait," which means what it says.  Well, Pat gave us hope by ensuring us that there are doctors, other experts in the field, as well as other people and families, who are all dealing with aggressively treating this disease.  She indicated that there are experimental treatments and new medications. As you can imagine, this is great news.  It gave us some hope back.  I am placing a link to this website on my blog here in hopes that some may visit it.

You never know how your small acts of kindness and thoughtfulness can so dramatically impact someone's life.  My mother seeing that she is not alone in her journey was a priceless Christmas gift for her and us.

So, again, ... THANK YOU!!  Thanks for taking a moment to write in.

A quick update: Mom is still in the rehabilitation nursing home waiting for her back surgery to heal.  She was hoping to be released yesterday, but she will not going home for at least one more week.  This was a let-down for her and us, but I know we have people pulling for us, which makes the let-down a little less down.

1 comment:

Kelly said...

what a great story about Pat. God can even work through blogs to bring people that need each other together. How cool is that?!