The Little Girl Who Did Not Make Her Own Red Blood Cells

* I asked my family to contribute to my blog and write out a story about Lizzie, their thoughts on our DBA journey, what your donation means to them and more. I will post the thoughts of my guest bloggers throughout my 12 in 12!


Guest Blogger 1- Kathy Bell aka Kbella aka my mom.  Wine enthusiast, Trader Joes advocate and a woman of many talents (sans cooking). My mom has been entrenched in the hospital world for the last 18 years. She can often be found sleeping on  cots or hospital couch beds, eating cafeteria food and rattling off lists of drugs, numbers and figures that would make the normal person dizzy. DBA and what it brings with it have become a fabric of life. And never one to live in a world and not try to make it better, she has become a voice for more blood and bone marrow donations as well as a provider of the little things that keep families going with the work of our families foundation and Team Lizzie Bell. It's not easy to figure out the ins and outs of a child with a life threatening illness while making such a difference but she manages to do with grace, fortitude and determination. 

Lizzie Journey: (written by Kathy Bell)
When she was small enough for me to still hold her - say- age 1 (Alicia not born yet) I remember entering University Medical Center and walking through the main lobby.  The thought came to my mind, what if this Diamond Blackfan Anemia thing takes a long time to resolve, what if we are doing this a long time.... (again, I was walking and thinking.... hard to  believe I was doing these two things at once) but I looked around at the people in the lobby - one older man stood out, he was sitting on the couches his skin was sun leather kissed and he looked tired.... there were different cultures in the area - Native American, Black, Hispanic, more....
I thought, well if this is where we are going to live, I am going to fluff the pillows and meet my neighbors.
That is how Lizzie and I became a face around the hospital, we would go to a different department handling her medical care and introduce ourselves, thank them for helping us and then move on.  It was either that or read MORE People Magazine and I was not going to sit around all day long, three days a week while waiting for test results or lab counts to come in... just could not waste time sitting any longer... so we would go visit people :-)
Favorites?  

• The kitchen staff who made the 'mashy pe-ta-toes' and BROWN gravy

• the nurses in the blood bank

• Uncle Ruben and Tio Tony in Phlebotomy - Lizzie would train the new staff in how to 'stick' a toddler to get blood.... "rub the cottons three times real good...."

• The gift shop! 

Meeting our neighbors and fluffing a few pillows is how folks first got to know the little girl who did not make her own red blood cells. 

(to donate visit: http://www.dbafoundation.org/donate.php and mention Amy or Lizzie in the purpose) 

Cinco= Dos and the Corporate Challenge

Cinco = Dos 

No, I am not (just) bad at math cinco DOES equal dos.. that is the Cinco de Miler was my 2nd race in my 12 races in '12 challenge! On May 6 I ran 5 miles with thousands of other Chicagoans... who I assume, given the date, were hung over. I am happy to say I was not one of them- having only indulged in one margarita the previous day. This was a bit easier than the first run especially since it was a whole 8 miles less! But it was exciting and fun just the same. Some highlights from this race were:

• Mariachis at the start line
• Churros at the finish 
• Pinatas shaped like cans of Modelo



Note the Model Pinata in the back!

• And ALMOST doing a sub 10 min mile pace  (I finished in 50:19 )

Corporate Challenge

On May 24 my esteemed colleagues and I took on the Chase Corporate Challenge! This race is where corporations in Chicago bring out their best and take on the streets. Naturally we not only had the best looking but fastest team out there ;) This races was only 3.5 miles but was still a bit of a challenge as the first 1.5 miles were spent dodging runners or avoiding being hit by other runners who were dodging people in a more aggressive fashion. 

LLS Corporate Challenge Crew!

Both runs were exciting and fun and helped me get closer to my goal of doing 12 races this year... and now you can help me get to my ultimate goal of raising funds for DBA research! Every dollar counts! To donate please go here: http://www.dbafoundation.org/donate.php and mention my name or Lizzie's name  in the purpose to make sure it goes towards my goal. 

A big thank you to everyone who has donated so far- to date I've raised $500!

Run One Done!

As I am sure you have guessed I take on this fundraising mission with passion, conviction and determination.. my first race, however, was approached with just a little less gusto.  It probably didn’t help that my husband, Mike, and I signed up for it after enjoying a 3(+) beer lunch on an unseasonably warm Saturday in March.  Sure, we hadn’t run more than 5 miles since November but we were feeling so awesome we were positive our marathon training from 5 (five!!) months prior would carry us through. After we signed up we made a training plan and then spent the next four weeks ignoring it. Never to be one to leave a friend in a bind, my best friend Annie decided to sign up the Wednesday before the race stating “friends don’t let friends fail alone.”

And so, my friends, that is how Mike, Annie and I came to run the Chi Town Half Marathon on April 1. The longest run between the three of us was almost 9 miles.. once. Our average “training run” was somewhere closer to 3 miles.  As we toed that starting line, the phrases “we’re idiots” “this is going to hurt tomorrow” and “I hope I don’t die” were thrown around.

I’m not going to lie. It was rough. There were a lot of mental games I had to play to get through.  “Ok, just two more miles and you get a GU! You like GU!” I’d say to myself. Or “you are doing this for fun, so enjoy it …dammit” and one I’m nearly ashamed to admit “should my facebook say this.. or this if I finish”  And that is what we did. FINISH!  Mike and Annie both set PRs* (Mike was 30 seconds away from a sub 2 hour half) and I cut nearly 15 minutes off of my previous half time.  It’s safe to say we were all rather shocked and quite impressed by the end. Take a look at our beaming faces below.

Moving forward I’m planning to train more since, as they say, lightening doesn’t strike the same place twice. And to assume I can finish every half without training would be pretty dumb. And now that the PR bar has been set for the year.. I just have to get a PR myself!

1 race down… 11 to go! Thanks for joining me on this journey :)

* PR = personal record

Donate here:  http://www.dbafoundation.org/donate.php (Please mention Amy or Lizzie in purpose)

And so it starts...

As most of you know I have spent my career fundraising for very important causes. I love what I do. I love who I work with and I love the missions I support. But, as worthy as they may be none of them directly impact the reason I got into this field in the first place, my sister Lizzie. It is for that reason I am embarking on 12 races in 2012 to raise funds for Diamond Blackfan Anemia (DBA) research and promote the bone marrow registry.

The facts are these- Lizzie has 10% working bone marrow.  Lizzie continues to develop antibodies from her years of being transfusion dependent. These antibodies decrease the pool of blood donors available to her. Lizzie does NOT have a bone marrow match. Lizzie is half Mexican, half German which makes it harder to find a match. Lizzie needs a match or a cure. WE NEED YOUR HELP.

Now, I don't want to scare anyone. We aren't frantic and we continue to monitor Lizzie and keep a close eye on everything. She is currently doing well. But we would be remiss to not plan for the future and make sure that we are doing everything we can to be prepared for anything. More than that, thousands of other people would benefit from furthering DBA and marrow failure research and hundreds of thousands of people will benefit from adding new donors to the bone marrow registry. 

Please check back frequently as I update you on my  12 races in 2012 (half marathons, 10Ks, 5Ks, maybe another marathon), share stories about Lizzie, talk about ways you can get involved and show that with every step and every mile I plan to literally run for her life. 

Join me, donate money, donate blood and/or sign up be a bone marrow donor. Together we can be the difference. 

donate here: http://www.dbafoundation.org/donate.php (please mention Lizzie or Amy in the purpose)