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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, (18) 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. Sarah's dad, Rev. Steve Smith, now pastors First Assembly of God in Smithfield, NC.
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 December when this present site was added.
Sarah's First Video!
Before you watch it, let me just explain that Sarah and her best friend, Victoria, were with Steve and Nathan at a friend's ski lodge and decided to shoot some videos.
This is a pretend newscast called "News at Ten" where they each change their name and then give news and commercials.
The last segment is especially funny because they pretend to be "Hillbilly" newscasters.
Enjoy!
For additional pictures of the Smith Family, go to:
www.picturetrail.com/princessgroovychick
Journal
Tuesday, October 7 To get the most recent update on Hannah go to, Hannah's Page
I got up nice and early (5:30) to post an upate. Got it all finished and then, whoosh--it disappeared into the great cyber beyond. Dontcha love it when that happens?
Since it's now time to go to work, I will have to write something later.
By the way, we're coming up on 1.3 millions hits. Keep an eye on the counter (at the bottom of the page) and let me know who is the 1.3 millionth hit. Or if no one is that exact number, let me know who is the closest one to it.
As always, you will win absolutely nothing--well, except to have your name posted right here! How exciting is that? You're probably thinking, "Not very!" (smile)
More later . . .
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Saturday, October 4
Yestesrday, Sarah was gallantly escorted to her endocrinologist's appointment by her dad. They always enjoy spending time together, even if it is just to go see yet another doctor!
I told Sarah before she left that they would probably be doing blood work but that I wasn't going to put any Emla (numbing) cream on her because I didn't know if they were going to draw blood from the back of her hand or inner elbow.
She said breezily, "Oh, I'll be fine. I've had it done so many times."
Turns out that when it came time for the blood work, she was all by herself. I said, "Didn't you want to call daddy in to be with you?"
She said, "Nope. I was fine."
That was the first time in her entire life she has ever gone through a blood draw without Steve or me! Pretty big deal, especially since they had to stick both hands after the first hand didn't produce any blood.
Two sticks. No parent! What an accomplishment!
The results of the blood work will be emailed to me next week; I'll pass those along when I get them. She was weighed and measured and her current height is 4' 10 3/4". I think we'll just round it up to 4' 11 because it's easier to say!
That reminds me of an old song by Evie, a Christian artist who was popular in the 80's. She sang a song that went:
I'm only four feet eleven
But I'm goin' to heaven
And that makes me feel ten feet tall!
I guess that can be Princess Groovy Chick's theme song! As I said before, she is the perfect huggable height!
We heard from Hannah's parents yesterday and Hannah has already been moved from Intensive Care into a regular room which is so much easier on everyone. (Parents are not allowed to sleep in the Intensive Care room; they have to stay awake all night. I remember doing that with Sarah and feeling like I would never make it through the night.)
If you scroll down the page a little bit, you'll see the link to her web site where there will be continued updates posted.
Thanks to everyone who signed Hannah's guest book and prayed for her. As I've said before, I've mentioned other relapsed children on this site, but never one who I see in the halls of our Christian Academy every day. Hannah is special to so many of us.
Hannah's difficult journey had made me ever more thankful than ever for Sarah's continued good health. Yesterday, she was sitting on the couch watching TV and I went and sat down beside her and she rested her head on my shoulder while I stroked her hair.
She turned the TV off and we just sat together in silence, no words necessary to express the love that we share. When I think of how few Neuroblastoma children make it this far, moments like that become even more precious.
I am thankful for growth issues, speech difficulties and hearing problems because those things mean we still have our child!
And I'm especially thankful for Sarah and her big brother as another season passes and another Christmas draws near. When she was diagnosed, we had no guarantee that she would see even one more Christmas, let alone seven!
So thankful for Sarah.
So sad for the families whose children are struggling.
So glad that God is in charge of it all and that we are all safe in His hands.
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Thursday, October 2
It's 5:45 am and Steve just left for Duke to pray with Hannah and her family before she goes into surgery. Thanks for your continued prayers and visits to her guest book.
Tomorrow Sarah is due at her endocrinologist's for a check up. It will probably include blood work to see where all of her hormonal levels are at.
Once again, over the past couple days, she's looked really pale to Steve and me and I don't quite understand why. But worry never did anything for anyone (except to create a few ulcers) so I'll just try to do the impossible, and be a non-worrying cancer mom. (IS there such a thing?)
We're waiting for a call back from Duke; before speech therapy starts, they want her to come back for a session with THREE of their experts in the room at the same time. (Last time, there were two. When we went last year, there was only one.)
I don't understand this change in her speech patterns and am concerned that it could be some late effect neurological problems showing up. When we go back for the follow up testing, she'll also see Dr. Driscoll, so that will make me feel a bit better, knowing that he's "in the loop" on all of this.
And on to "lighter news:" Some of you were kind enough to comment that I looked slim in the picture that Steve took of me with our old sound board.
And then I thought, "Oh dear. It didn't even occur to me that this was the first picture posted of me after having told everyone I had lost 25 pounds."
I don't think that being crouched in an awkward position over a disemboweled sound board is the kind of pose that Weight Watchers would choose for a before and after shot of one of their clients!
I'll have to get another one taken where I can stand sideways and suck in my stomach--it's really pretty hard to do all of that "necessary" stuff crouched over a sound board!
But anyway, thanks for your nice comments--I did appreciate them!
Since I've lost the weight, I'm now hanginging out at our local thrift and consignment stores and snatching up
every bargain I can find in my new size. (And when I say bargain, I mean bargain: we have a wonderful store in town where all the pants and shirts are three bucks!) There are few things I love more than bargains!
I'll close out with a picture of Sarah and some school friends I snapped outside my office door on Monday. As I've said before, one of the great benefits of my job is getting to be in the same building as my daughter all day. I love having Princess Groovy Chick stop by for spontaneous smiles and unplanned hugs.
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Wednesday, Oct. 1
LITTLE HANNAH
Hannah and I together last year
Many of you have read about Hannah Pasquenelli on this web site. She has just relapsed with cancer for the third time and is having a very serious 10-12 surgery tomorrow at Duke. Following the surgery, she will be in the hospital at last two weeks.
Please go by her site and leave words of encouragement for her family.
I've seen Hannah twice at school this week. One Monday, she was in the cafeteria so I went over to chat for a few minutes. She has the cutest little speaking voice, almost like a miniature Minnie Mouse. She stood up real tall and said, "Look how much I've grown over the night!" (Of course, she meant to say, "overnight" but "over the night was so cute!)
I saw her again yesterday and when I bent down to hug her and say hi she pretended like she was a boxer. I said, "Ouch. You can't beat up an old lady like me!"
She stole my heart forever when she replied, "You're not old. You're YOUNG!"
Bless you, my child! (smile)
I talked to her mom, Diana, about half an hour earlier this week and was so touched by her love for her daughter and her pain over what Hannah is having to go through. The prognosis is not at all good so your prayers and words of encouragement are especially appreciated right now.
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Tuesday, September 30
FOLLOW UP ON "THOSE YEARS"
(PLUS: A COLLEGE DUDE BIRTHDAY TOTAL)
Some of you asked some questions about our road life, which I am more than happy to answer. (Does this mean I'm starting to enjoy reminiscing about the good old days? Oohh. I can already feel over-the-hillness creeping up on me!)
1. Pam D. asked, "I'm curious: What memories have Sarah and Nathan shared of their time on the road?"
Hmmmm. I asked Sarah if she remembered traveling (we stopped when she was only six) and she said she did remember quite a bit. She said some of her most vivid memories are playing with her little toys and dolls on the front pew while Steve and I were up front singing. She also remembers falling asleep on dozens and dozens of church pews all across the country.
Sarah and Nathan remember tons of different nurseries, Sunday school classes, and Children's Church services. The challenge of that lifestyle for the kids (and for Steve and me, as well) was that we got to know people we really liked and then, a day or two later, had to leave them behind.
Nathan told us recently that for him, traveling seemed like a "blur." Of course, he remembers some specific things along the way, but when you move around as much as we did, it's hard to keep all the details straight.
He did say he sometimes envied some of his friends who are able to say, "Well, I had "Mrs. So and So" in sixth grade and I still see her at school."
He has had so few "constant people" in his life because of our traveling; if there were any regrets involved in that lifestyle that would be the biggie-- the lack of community for all four of us.
And yet traveling taught both kids to be very comfortable in new situations and around new people. Ever since they were babies, they've been non-clingy and able to adapt quickly to new things and new places; skills that will be a huge help to them throughout their entire lives.
Ashlee asked, "How does prenatal care work while on the road??? I'm currently pregnant and couldn't imagine trying to see an OB while traveling."
Great question! Throughout both pregnancies, I carried my medical records with me and every month, saw a new OB in a new town. (I always made sure to get a reference for the doctor from a pastor's wife or some other reputable person in the town we were in.)
I found out pretty quickly that some doctors would not even see me when they found out they were not going to be caring for me during my whole pregnancy.
But I still managed to get by--trundling from unfamiliar doctor to unfamiliar doctor with my little manila folder clutched in my puffy hands. I'd have to explain to each one of them just why I did not have my own OB, which led to some interesting conversations. (And some interesting looks!)
My biggest regret from those "baby days" was that I never got to decorate a nursery. When Nathan and Sarah started on the road (Nathan at two weeks, Sarah at two months) we were not living in the larger RV you see in the pictures below. The recreational vehicle we were living in then was sixty percent smaller so their only "nursery" was a little porta-crib that shared space in a cramped living room with a love seat and a dinette set.
So sometimes when I walk into people's houses and see darling little nurseries, I have a few little twinges of sadness. But I feel better when I remember that Sarah and Nathan didn't know that they didn’t have a nursery. What they DID know was they were fed, dry, burped, loved and prayed over. Nursery or no nursery, they were contented and cheery little gypsies!
Several of you noticed the words, "Residential Suite" that were painted on the back of our trailer. Actually, the company that built our trailer put those words on all their units so we didn't choose them. I do admit though--it is a clever phrase! (And for those who might not know: For fifteen years, we did not own any other home except for the RV.)
Lyndsay from Canada asked, "What happened if you just needed to run to Wal-Mart to pick up some toothpaste? Did you have to drive that huge rig?"
No, as soon as we got settled in somewhere, we would unhook the semi truck from the trailer and that was our family car, complete with a car seat and sipper cups! For as long as we had that vehicle, I could never go through the drive thru at a restaurant. You don't know HOW happy I was when we left the road and bought a mini van. I went straight to the McDonalds drive thru and ordered something--just because I could!
I drove the semi truck to the mall and the grocery store; everywhere I went. When the trailer was hooked up, I also drove the entire 67-foot rig down the road when Steve needed a break. It was always funny to be passed by truckers and have them look over and see a woman driving this very cool, very large rig.
Of course, I also blew the doors off a few truckers in my time, but we won't discuss that! (smile)
It's funny--when I was in the fifth grade, my teacher asked me what I wanted to be when I grew up. I wrote down, "A gospel singer or a truck driver!" I ended up being both!
If you have any more questions, be sure to ask them. I'm lovin' this reminiscing stuff!
And finally, I know some of you have been curious to hear Nathan's final "birthday total." In fact, Teressa from NC asked the question for all of you, "By the way.........give us a count on Nathan's total!
The answer is:
$1,450!
(Along with some wonderful food gifts and other goodies.)
At first, Nathan was a bit hesitant about having the amount posted. He said, "I don't want to seem like I'm bragging over how much came in; I really just wanted all the people to be able to know what they had accomplished together."
He then went on to say, "What a GREAT birthday!" I know it's one he'll never forget.
And just because I'm a Mom, I have to mention that he is not all about getting, he’s also about giving. He's already decided to give away ten percent of what came in, just because that’s how we’ve taught him and that’s what he’s always done with any money he receives.
And in case you're wondering, yes, I AM proud of him and yes, I DO miss him terribly, and yes, I AM going to drive to Lakeland, FL tonight and kidnap him and bring him home.
(Please don't tell his dad or his University president; this plan is top secret.)
Sigh.
Don't I wish?
I guess I'll just have to settle for traveling to Lakeland by phone and email and text messages and prayer.
That child just grew up way too fast and went away way too soon. I miss grubby hands, toddler tantrums, jelly flavored kisses, and little red bow ties. I miss unruly blond hair, gleeful guffaws, dinosaur stories, and nighttime prayers. I miss little boy hugs, “Good Night Moon,” muddy sneakers and hazel eyes that rarely stopped smiling.
In short, I miss the Nathan who was little and I miss the Nathan who is big. And just like all moms, I miss all the stages in between, the stages that will never be repeated, the stages that pass so fast but seem so interminable when you’re in the middle of them.
Sigh.
I’m feeling a bit melancholy tonight, in case you haven’t noticed. I have my husband, my daughter, and my dog so why should I still miss Nathan so much?
I guess it’s just because I’m a mom. And we moms are funny that way. We teach our kids to walk but then when they walk right out the front door and out of our lives, we can’t help but be a little bewildered. We look around the room to find traces of who they used to be and we look around our hearts to find some hope that the roaming child will one day return.
And come Thanksgiving, this particular roaming child WILL return home. To Mom, to pumpkin pie, and to the embrace of a home that misses him dearly. I’ll be enfolded in a big boy hug, I’ll hear his gleeful guffaws and I’ll look into hazel eyes that rarely stop smiling.
Is it Thanksgiving yet?
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Monday, September 29, 2008
THOSE YEARS
Today Steve got out an old equipment rack that we used when we traveled and sang and he took it apart so that he could remove the sound board. He and I stood and stared at its disemboweled presence in the church lobby and reminisced back to 1989 when we first started traveling with that particular piece. (In fact, that piece of equipment entered our lives the same year that the College Dude did!)
Pregnant with Nathan
In the studio. Not pregnant with any child. The "baby bump" was caused by too many road meals and church dinners.
Today, Steve and I stood and talked about how many hundreds of times we had loaded and unloaded that particular piece of gear--out of the truck, into the church, out of the church, back into the truck and back down the road we would go--child (later, children) in tow, our house hooked on behind us, our dreams stretched out before us.
All the different places we stored our gear.
Nathan, "hanging out" at home.
Sarah and her "front yard." She got used to a LOT of church parking lots! (That's usually where we parked our RV.)
Steve doing one of our "novelty songs," Garth Brooks style.
Singing in Cumberland, MD
Steve in his natural habitat on the road--fixing something.
The Smith Home
Fifteen years. Traveling to forty states. Traveling pregnant--twice. Traveling with children in many stages--newborns, toddlers, adolescents. Traveling with a dog. Traveling while home schooling kids in the truck. Traveling through rural Louisiana and modern Minneapolis. Traveling through hard times and laughter and heartache and inspiration and poverty and plenty and tears and worry and hope. Traveling on, despite an accident that completely destroyed our first truck and trailer.
Those were the years. We were young and full of enthusiasm and our dreams were as shiny as a bright new penny. I was doing what I had said I had always wanted to do: travel and sing with my family.
An early publicity picture. Don't we look all shiny?
A few years later. Still shiny!
Now we're a whole lot older, a little bit wiser, and the luster on our dreams has faded a little bit. Life has given us a few kicks and we've been hurt and disillusioned a time or two. Just like everyone has.
But we'll always have the memory of Those Years. Those years when the road and our whole lives stretched ahead of us and nothing could slow us down. I wish that every person alive could have Those Years, a time when faith comes to fruition and dreams come to life.
Am I saying that our best years are over? Nope. Not at all. I am saying that we were blessed to have a chance to do our dream. We were brave (maybe foolish) and we took a huge leap of faith, selling our house and our belongings when I was three months pregnant with no guaranteed income.
But we are who we are right now because of Those Years. The four members of our family are best friends because of Those Years. We have friends across the country because of Those Years. We have eaten in hundreds of homes and church fellowship halls, we have seen much of the country, we have been blessed by meeting new people and experiencing new vistas--all because of Those Years.
Right now, we're in These Years. These years will one day become Those Years and we will look back with joy and longing and mixed feelings of all varieties, grateful for other dreams fulfilled and other chances to fulfill our purpose on this earth.
So today, while I am thankful for These Years . . .
I will be forever thankful I was blessed with Those Years.
Read Journal History
Hospital Information: Home!
7 Woodsdale Dr.
Smithfield, NC 27577
Links: http://jonathanshope.org A foundation which helps Neuroblastoma families
http://acor.org Good Neuroblastoma info
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