Taking Advantage of a Hospital Stay

As you know, Sam is in the hospital and will probably be in for the next week or so (read about her stay here). My question for the CF community is: Do we do a big fundraising campaign to take advantage of the situation? Cystic Fibrosis is on the minds of all of our friends, family, coworkers...everyone...because of his hospitalization. We've had a few dry years as far as fundraising goes and Alicia brought this up as a possibility.

I'd love your thoughts on this as it's something I'm very willing to do. We've had a hard time really connecting to the CF community in Chicago/Milwaukee, but it doesn't excuse our responsibility to work hard for a cure.

The biggest disadvantage I can think of off the top of my head is that it seems a little underhanded to ask everyone for money when all everyone is trying to do right now is just support us as lovingly as possible. I don't want to take advantage of people, just the situation that we're in at Children's Hospital of Wisconsin.

So, what do you think? Should we make a big push?

Sam is in the Hospital

For those of you who aren't "friends" with me or Alicia on Facebook, Samantha is in the hospital in Milwaukee, WI, for a tuneup. I'm posting about it in more detail over at my personal blog: www.navychristian.org. 

Chicago Marathon and Cystic Fibrosis

Dear friends of Samantha,

As you know, our daughter Samantha has cystic fibrosis, a disease that, without a cure, will spell her early death at the age of 37. I hate that with a passion that has driven me to do some pretty crazy things…like sign up to run a marathon!

Yep, you heard that right. I'm running a marathon!

This year I'm signed up to run the Bank of America Chicago Marathon on October 7th. While I'm going to do the running, you're the one who has the chance to actually make a difference for Samantha. I'm running for the Cystic Fibrosis Foundation, and your donations help us help Sam.

Many of you have given in the past, particularly when I ran the Carlsbad Half Marathon when I lived in San Diego or the Barrington 5K here in the Chicago area. I've always been grateful for those who have supported us in the past, and I thank you.

Yet there is so much to do still. Until there is a cure, and until Samantha isn't under threat from cystic fibrosis, I'll keep running…and I ask you to keep giving! Thank you for your time and your consideration!

You can read about my running at www.navychristian.org. Click on the label titled “running” and read some of my journey!

Please donate to our cause…our fight…and help Samantha continue to live a healthy, vibrant life. With your help, we'll whip Cystic Fibrosis for good!

Donate here at the Cystic Fibrosis Foundation: http://www.cff.org/LWC/DanielSmith

--
Sincerely,
S. Daniel Smith
www.navychristian.org

Hannah and the Chance for Cystic Fibrosis

For those of you who don't know, Alicia gave birth to our second daughter, Hannah Grace, on the 9th of April. You can read about her first day with us here. A few people have asked me in the run toward her birth about cystic fibrosis, and if we were concerned that Hannah may have it. Since the pediatrician just came in to discuss getting the newborn screening done, my mind has wondered back to the subject.

So the question is, "Am I concerned that Hannah might have CF too?"

I know that there is a 1 in 4 chance that Hannah will have CF. Boiling it down to pure numbers, it doesn't matter that Samantha has it or not. My wife and I are carriers. There is a 25% chance that she has the disease. Period. No need for argument.

But we don't live life in numbers. We live a life of emotions, fears, etc. Am I afraid that Hannah will have CF? Not really. I'm probably a little in denial about it I guess, but the fact is that I'm not worried.

If Hannah has CF, then we will treat the CF and hope for a cure for two kids instead of one. If Hannah doesn't have CF, then we will enjoy that fact, praise God for it, and continue raising money for a cure for Samantha's disease.

Honestly, it just doesn't matter. The blood tests will be back in a few weeks. We'll know then. We have a great staff at Milwaukee's Children's Hospital who know our situation and are seemingly as eager to find out the results as we are and who will begin an immediate care plan for Hannah if she does have CF. I'm sure they will rejoice with us if she doesn't.

God is bigger than me, more powerful than me, and infinitely more good than I am. He knew Hannah before she was in the womb. He's got her back.

Why I wear red Shoes

Ever since I started my training for my first half marathon back in 2009, I have worn running shoes that had at least a hint of red on them. The picture above is my newest pair that I purchased to start training for the Chicago Marathon for this October. I don't expect these shoes to last me until October since I'll be putting a lot of miles on them by that point, but they will get me through an arduous training program. As July and August near, I will need a new pair (sorry honey), and hopefully I'll be able to find a pair I like that have red on them.

Why red? Simply put, red is Samantha’s favorite color. Why do I wear it? Because the marathon isn't for me, it's for her. Yes, it will help me with my weight issues (if I train correctly) and satisfy the itch to perform and compete, but the bottom line is that I'm raising money to fight her cystic fibrosis by running this marathon.

So the red is a reminder that, with each step I take in training, I'm a little bit closer to ending her disease. Someday, maybe not all that far away, I will be able to say with a high degree of certainty, that we found a cure. Then I'll have to run marathons for another organization, and I'll find a good color for that one too.

She's so Skinny!

I was at Wal Mart with my daughter trying to spend her Christmas money a week ago or so. Her sno-globe had broken and she wanted a new one. Well, it was her money, so guess she can have one if she wanted it. Anyway, we were looking around the store when an older woman saw Sam and me walk by. I think Sam's size startled her.

She did a double take and said, “She's so skinny!”

“Yes she is,” I said dismissively.

“I mean she's skinny!” Like I hadn't understood it the first time.

“She has a disease,” I said as dismissively as I had the first time.

The lady just stared at her and then at me. I'm sure the fact that I'm overweight didn't help things. She probably thought I starved my daughter or something. I don't know. As awkward as our conversation had already been, it was made even worse by the fact that she just wouldn't walk away. Finally, in as much of an act of desperation as anything, I started to walk away with Sam. The lady turned and left as well.


Ma'am, my daughter has cystic fibrosis. It's a fact of life, at least for her. I'm happy if she gains any weight at all. Thank you kindly for not staring at us like we're aliens.

Chicago Marathon!

I'm running the Chicago Marathon! I'm so stinking excited. Not only am I running in one of the biggest races in America, but I'm getting to represent my favorite foundation while I'm doing it. So on October 7th, I'll be running 26.2 miles for the Cystic Fibrosis Foundation and my daughter, Samantha, who has cystic fibrosis.

Word will be coming forthwith on fundraising, training programs, and general preparations for the marathon.

My immediate goal is $1300 in fundraising, but since we aren't doing a Great Strides this year, my goals will change before the summer. By then I'll know more about my ability to run it well and my ability to raise funds for the foundation.

Hard to Stay Focused

Let me be frank for a moment. Samantha barely seems to have Cystic Fibrosis on most days. Since her adenoid/tonsil removal, which also involved a sinus surgery, she has had very few symptoms (cough, drainage, etc). Her weight is still frustrating, but she's energetic, healthy, and active. In short, most people wouldn't know that she had a disease that will kill her by the time she reaches the age of 37.

On those days, I have to remember, forcing myself somehow, that Samantha is one of the lucky ones. I just read of another CF patient who died today. It was sad, and yet inevitable. It's not that I'm losing hope, I'm just in denial. I guess I just ignore the facts about CF.

So it's time to get busy again. Upcoming on the schedule is putting together some volunteer opportunities for my Sailors to work with the local foundation office, running a marathon to support the foundation, and taking care of my daughter. It's game time. Gotta refocus.

Fired Up

I hate Cystic Fibrosis.

A very haunting thing showed up on our doorstep Sunday Morning. We get the paper every Sunday. I'm accustomed (at least in football season) to promising myself I'll read it, but never getting around to it. Well, this weekend was the same, until Alicia saw what was on the front page. I didn't read the article right away because I saw how powerful it was and the effect it had on Alicia.

Well, that was Sunday, and last night I finally read it. Now I'm angry. My daughter will one day, unless there is a cure, need a double lung transplant like Cassie had. Hopefully, her body won't have problems accepted the lungs like Cassie's did. I said that too positively. Her body REJECTED the lungs. I feel sorry for her, and horrified at the possibilities for my own daughter's life.

I live in a lot of denial about my daughter's disease. I almost feel cheated sometimes because it has held us up a few times here and there. Reading that article was good for me because it brought me back down to earth. I need to stop being selfish about the issue and fight. Fight with all of the fatherly drive in me to try and end this disease. Fight like hell so that maybe my daughter won't have tubes strung all around her because her lungs can't process enough oxygen without help. Tubes because her body can't process food correctly. Tubes...

Our fight is for all of those with cystic fibrosis. So many other people are better at it than I am. They raise more money than I do and raise more awareness as well. My only response is that I will contribute what I can. For my daughter, for Cassie, and for the 30,000 other CF patients in the United States and several other thousands outside of our country.

Keep fighting!

How to Approach the New Year

I've been thinking a lot about cystic fibrosis lately, mostly because of a situation facing Samantha right now. Her weight has been a struggle since she was born. I think her previous doctor would talk to us about her weight at every visit. She was always too far under 50%.  We moved here to North Chicago a little over a year ago and checked in with the wonderful CF team at Children's Wisconsin in nearby Milwaukee.  Her first appointment she finally reached 55th percentile, the highest she has ever been.  But the next 6 months she spiraled down, almost leaving the growth chart entirely.  Finally, at one point, her doctor said if her weight can't go up then we'll need to start discussing other options, such as a g-tube.  By the grace of God, her weight did go up at that point and stayed fairly steady the rest of 2011 just below the 50th.  We were so excited!

Unfortunately, at her last appointment she grew in height and lost a little in weight, which shows that this continues to be an issue for us.   She barely eats anything, and what she does like to eat tends to not be very fattening.   We work so hard when she is doing well to keep her even up to the 50th that it is such a defeat when she drops. So here we are starting 2012 with the potential for a g-tube. Samantha's doctor is very concerned, and we know without a definitive change, her doctor will require it.

Those who's kids have a g-tube encourage us by explaining it's not as scary as it seems, and that it is very freeing to reduce the stress of getting those needed calories during the day.  But we can't deny that we would like to avoid needing one. One of the reasons we don't want her to get one is because we think that maintaining the near 50% we've been at is good. During the last appointment, Sam didn't gain weight, so she actually "dropped" under what she had been. We know it's not great, but it's not horrible either. She had surgery this quarter and for that being the case, I still say maintaining her weight was a blessing.

Still, the concerns popped up...and the feelings of failure. Alicia sees it more than I do, or feels it more than I do, but I'm on board with the need to fix the problem, whatever that is.

New Year's Resolutions? None to speak of, except my personal ones on my other blog. But for Sam? Just to get better. Get better at treatments...get better with food intake...get better with vitamins...get better at health...get better.

Ok, CFrs...what are your resolutions?