Hello and welcome! By way of introduction, our thirteen-year old Sarah has a wacky, irrepressible sense of humor and loves art, dogs, music, and writing her own books. She used to be blond and curly-headed but chemo, radiation and a stem cell transplant did away with the old look. Her new look is brunette and her new attitude is, "I have survived and I'm glad to be alive!"

Diagnosed with Stage IV neuroblastoma in May of 2002 when she was six years old, she's been through too much and grown up too fast; however, she still manages to sprinkle each day with her special, custom blend of giggles and joy, compassion and courage.

In July of 2005 she was declared to be in remission; in June of 2006, she relapsed in her adrenal gland, femur, hip and backbone. After three rounds of Accutane, her scans came back clear. She did two additional rounds of Accutane and is now considered to be back in remission.

Whatever lies ahead for our perky princess, we know that she is definitely up for it! She's not only our daughter, she is also our inspiration.

For those of you who may be new to our family, let us give you a brief history. We spent fifteen years traveling full time, doing about 160 concerts in churches every year. Sarah and her brother Nathan, (19) were on the road with us since they were about four weeks old and have been in forty states, Canada and Mexico. For seven of those fifteen years, our family lived year-round in a 45 foot, custom-built two-bedroom R.V. pulled by a Kenworth semi truck. In our fifteen years on the road, we recorded thirteen CD's of original music. When Sarah was diagnosed on May 17, 2002, we left the road so that we could dedicate ourselves to doing everything possible to help her get well.
Thank you so much for joining our family on this journey!


NOTE: We've been told by a number of people who just recently joined us that they wish they could read journal entries we had written before we started this web page. With those requests in mind, we have opened an "archive site" at Sarah's Spot Archives that includes email updates to friends that go back to the day Sarah was diagnosed. It tells our story up through January 2003 when this present site was added.

BR>





For additional pictures of the Smith Family, go to:
www.picturetrail.com/princessgroovychick

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The Sarah Smith Neuroblatoma Foundation Web Site is now up and running. This foundation was started by Gretchen Woody and has a Board of Directors and a medical advisor. The goal is to raise money to help with finding better treatments (and a cure!) for Neuroblastoma.

Sarah Smith Neuroblastoma Foundation

Journal

Wednesday, January 7

I'm baaacckk!!

Actually, I'm not "back" as in "back home" but I am finally able to get on the Internet here at Hilton Head. (Or is it ON Hilton Head? I never know how to say that.)

We're due at a meeting in a short while so I just have a moment here.

First of all let me say that cheese cake, delivered by room service at
10 pm is a wondrous thing. I would not order room service on my own, but since our food is provided as part of our payment for doing the music, I thought I would splurge and have cheese cake brought up. Positively decadent!

Some of you asked in the guest book if Nathan's trip is still on. Well, we haven't heard anything different from the University, so I'm assuming it's a go. Am I little bit worried? Yes. But I'm trusting the University officials and the Israeli experts that they work with to make the best choice for the students. I'm so excited about Nathan getting a chance to do something like this; I would be disappointed if it didn't go through. And he'd be disappointed too.

As far as I know, he's still leaving a week from Sunday.

Another question referred to the church in the foothills we've sent a resume to. I'm afraid I can't reveal the name of the town or church yet but I'll let you know as soon as I can. We also have a couple things in Eastern NC we're looking at so we'll see what happens.

Well, I must say I'm looking forward to seeing my two children and little doggie tomorrow evening.

I'll write more when I have a chance to get unpacked and catch my breath.

Thanks for stopping by!



______________________________

Sunday, January 4

Nathan and Steve just took off to play some racketball. They are pretty fierce when they play and both come home happily exhausted. I am content to just stay home on this rainy, lazy Sunday afternoon and be happily exhausted without all that exercise!(and sweat!)

Keely asked in the guestbook if Nathan and Meagan (pictured below) were "an item." The answer is no. They've just been really good friends for a long time. (But I DO agree they are certainly cute together!)

I don't know what the Internet connection will be like at Hilton Head; hopefully I can be in touch throughout the week.

__________________________________


Saturday, January 3

Steve and I had a lovely 27th anniversary celebration yesterday. We went to lunch at a quaint restaurant set up in an old house and then drove into Raleigh to tour the North Carolina Art Gallery. We hadn't been there in over twenty years and it was a wonderful change of pace for us.

On Monday, Steve and I are leaving for a 4-day trip to Hilton Head Island, SC which is basically a resort area where a lot of wealthy people hang out. Steve and I have been invited to provide the music for a Minister's Retreat; in the process, we will have a lovely hotel room on the ocean and all meals provided. Hooray!

And now on to babysitting arrangments. Do you think Nathan will be babysitting Sarah or will Sarah be babysitting Nathan? I'm not sure WHICH way it will work but it should be interesting.

Nathan has to make sure Sarah gets off to school every day and they have to cook dinner together and remember to take the garbage out to the curb and clean up stuff and do laundy. I would love to be a fly on the wall watching the two of them all week. I'm sure it will be good for plenty of giggles.

We had a special friend of the family over for dinner tonight--Meagan Hawley. She is also a student at Southeastern and her parents are among some of our dearest friends. (They pastor a church near the University.)

Best of all, Meagan is very helpful to me in keeping Nathan in line and that's not an easy job!



Okay, I'm off to see what Princess Groovy Chick is up to. We try to read together before bed several times a week and it's getting to be about that time.

Hope 2009 has been treating you well so far!

__________________________________

Friday, January 2, 2009 9:48 AM CST

BOOKS, BARGAINS AND BREAD


Well, are you ready for the big announcement?

Or pronouncement?

Or whatever it is?

Now if I were a truly mean blogger, I would make you wait until this evening. However, since I am so very nice and sweet, I will go ahead and tell you now.

Or later.

Or whenever I get around to it.

Or not.



Okay. Here it is.

This week for the first time in twenty-seven years . . .

Are you ready for this? (drum roll, please)


Steve weighs more than I do!!

(Pause here for great merriment and rejoicing.)

I realize that some of you may have been misled by my hints that this occurence happened during our anniversary week and thought it was somehow tied in with the anniversary. But no, it was just a coincidence that it happened this week. For all these years I have weighed more than Steve but now he has gained weight (which he's happy about) and I have lost weight (which I'm thrilled about) and here we are at this wonderful celebratory moment.

(And you're all thinking, "Boy, she sure doesn't get out much, does she?")

Well, that was it! That was the news! Feel free to celebrate in your own personal way wherever you are around the globe. Or more specifically, please have a serving of chocolate in our honor.

I still don't know what we're doing today; something inexpensive but fun, no doubt. (Which is actually my favorite way to celebrate anything.)

Speaking of inexpensive, a couple days ago I asked Sarah if she just wanted to go out and do something. I didn't really have anything in mind but I wanted to get her out of the house for a while since she'd been holed up in her room all week.

We had to go by the Post Office first and then I had a drop-off to make at Salvation Army. While we were in the parking lot I said, "Sarah, do you want to go in the store and look around?"

She said, "Sure!"

We happily puttered around in there for thirty minutes or so; she found the cutest skirt (for a dollar) and I found a gorgeous sherbet orange blazer. (I LOVE the sherbet colors.) As we were paying I looked at Sarah's happy face and thought how thrilled I was that I had a daughter who didn't turn her nose up at a less than inspiring place to shop and didn't refuse to buy "second hand stuff." We were talking this morning and both agreed that the majority of what's in our closets came from thrift stores and consignement stores. We're the Bargain Gals!

We went from there to a book store in town; Sarah can rarely have any money in her pocket without her internal compass pointing her toward a place to buy books. We rummaged around in there for a while and found some bargain treasures. After a visit to a used CD/DVD shop, we headed home to homemade soup waiting on the stove and homemade bread in the bread maker.

Books, bargains, and bread, all in one day. Does life get any better?

I heard back from the scheduler at Duke this morning; she said the neurologist would not be back in his office until Monday and she would contact him then about a couple of kids (including Sarah) who need to be moved forward on the appointment calendar. I so appreciate people like that who are willing to go to bat for people like me.

It's been fun (and informative) reading the guest book entries about the Cup Game. (I've even gotten some emails about it.) I didn't realize it had been played on TV shows and in a lot of other places too.

Thanks too, for the advice about my voice/lung issues. Today, I'm having another "hoarse" day which is just a little bit frustrating. Sigh. I'll see what my pulmonologist has to say.

We are all counting down the days until Nathan leaves for Israel. Such an adventure for him to live out in person and for us to live vicariously. In the meantime, we're keeping him busy with lots of "house related stuff," like climbing very tall ladders and washing windows and replacing light bulbs. Better him than me!








Our "getting the house ready to sell" work is almost at an end; we should have it listed by late next week. It's kind of a hard balancing act--we don't want to list it so early that it sells out from under us and we have nowhere to live. And we don't want to list it too late and have it not sell and end up paying two mortgages. I'm sure everyone who's ever sold a house understands the predicament.

As for our future employment possibilities: there is a church in the foothills of North Carolina that we're interested in. The pulpit search committee there will not be gearing up to start interviewing pastors until next week. Steve has a resume' in so now it's just a matter of waiting.

I know for sure that this particular New Year will present our family with many new experiences. I found an anonymous prayer poem that sums up the New Year for ALL of us and I'll close with it.

God of the years that lie behind us
Lord of the years that stretch before us
Keeper and King of the open door
All through the seasons of sowing and reaping
All through the harvest of song and tears
Hold us close in your tender keeping
O Maker of all New Years!

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