History

Tuesday, September 7, 2010

Sarah is back at school today after five days off due to 1) a week end 2) a holiday 3) a hurricane

She continues to love school which makes me beyond happy. I didn't really enjoy my school years so I'm especially thrilled that things are different for her.

She had sort of a tough day yesterday with a Snowy Incident which you can read about here.

But all is well today!

Thanks for stopping by and continuing to follow the story of our beautiful miracle girl. Every day that I drop her off at school, I am so thankful that she is still alive and still doing so well.

I never, ever take that for granted.

________________________

Friday, August 27

SCHOOL DAYS

Just wanted to let everyone know that Sarah's first three days of High School went absolutely wonderfully! She loves the school, loves her teachers and is full of enthusiasm about the whole experience.

I'm so thankful!

Thanks for all the birthday wishes for her and all the "Happy High School" wishes as well.

I'm hoping she'll be signing in here before long and do her own update.

________________________

Wednesday, August 25

Signing in one more time today . . .

I just found these pictures of Nathan and Sarah; I think she was starting 5th grade and he was starting his senior year. It was 2006; Sarah had relapsed a few months prior.

FIRST DAY OF HIGH SCHOOL

Sniff.

At 7:55, Snowy and I took Sarah to Manteo High School and dropped her off for her first day of ninth grade.

Snowy was on high alert and taking his job of bodyguard/chauffeur/resident doggie very seriously.

I was torn between feelings of happiness and sadness. So happy she is still alive to even go to High School; so sad that she isn't a 3-year old toddler anymore.

Yesterday when she was gone for a while, I went up to her bedroom and lay on her bed and listened to the sounds of childhood forever disappearing into her walls.

A new chapter. A new day. A huge step forward toward adulthood. And leaving home. And college. And marriage.

Sniff. I'd better leave you with a couple of first day pictures and go find my box of Kleenex. (I imagine Kleenex does a roaring business every year on the first day of school.)

_______________________

Monday, August 23

Happy Fifteenth Birthday Princess Groovy Chick!

Here are a few photos from the earliest years of her life to prove that she started out cute and just got cuter as the years went by.

We love you, sweet girl.

__________________________

Tuesday, August 17

I wanted to mention that Sarah will turn fifteen years old in just six more days! (August 23.) That is so wonderful and so incredible and so miraculous!

If you'd like to send her a card, our address is

127 Raleigh Wood Dr.
Manteo, NC 27954

I'm home from today's surgery; I'll post more about it tomorrow over at Smithellaneous

___________________________

Friday, August 13, 2010 6:27 AM CDT

Last week I did an Archive Post about Sarah's unexpected hospitalization right before a trip we had planned for Disney. In the guest book, Jill asked if that trip had ever worked out.

Well, here's the story on THAT! But before that story, here's the pre-story.

Sarah's social worker at the hospital had been in touch with Make-A-Wish so that we could plan a trip before Sarah's bone marrow transplant. As it turned out though, our local chapter of MAW was out of funds for the year and so a trip was not going to be possible.

Of course we were disappointed but we realized there was nothing that could be done about it.

However, just a few days after getting that news from MAW, we got a phone call from Steve's cousin and her husband who both attended First Baptist Church in Orlando, FL. They had not only been following Sarah's story on Caringbridge but had also been sharing it with the choir they were a part of.

Long story short? The phone call brought us the news that the choir had been so taken with Sarah and her story that they had decided to sponsor a trip to Disney for the whole family before her transplant.

Talk about great timing!

This entry starts with some other good news we got that week concerning Sarah's transplant; we had originally been told that she would be having the transplant over Christmas and as you can imagine, none of us were too thrilled about that. However, that schedule changed due to some circumstances at the hospital and we were able to be home together for Christmas after all.

And that's where this archived excerpt begins. . .

DECEMBER, 2002

It was kind of funny how Steve told me about the change in the transplant schedule. I was in the bathroom putting on make-up and Steve, who had just been on the phone with Duke, stuck his head in the door, struck a pose and started crooning, "I'll be home for Christmas."

I gave him a "You are very strange" look and continued with my mascara. He ignored me and once again started singing, "I'll be home for Christmas."

By this time I was becoming just slightly irritated at having my important morning make-up routine interrupted by a Bing Crosby wannabe, especially as he launched into the song for a third time.

But all of a sudden, it hit me.

I looked at him in shock and sputtered, "Do you mean . . . ?"

He grinned and said, "Transplant has been delayed till December 29th!" (Sarah actually ended up not being admitted until January 2, which happened to be our 20th wedding anniversary.)

What fun it was to go and tell Sarah. Her shining little face became even more radiant as the full import of that news sunk in. We are all so thankful for that incredible gift of time for our family to be together, especially with such a long separation coming up.

And now let me tell you a bit about our visit to Florida. Our sponsoring church, First Baptist in Orlando, spoiled us beyond rotten and made our family feel like royalty. Sarah just went from smile to smile to smile, pausing between smiles only long enough to jump up and down in excitement and gather up a few smiles more.

Since I've been with her through so many difficult medical procedures over the past seven months, it was especially wonderful for me to look at her face and see joy in the place of trauma.

We got out out of the hospital just a day or two before leaving on the trip so we were in a whirlwind of unpacking and re-packing. And then, the night before we were to fly out, North Carolina experienced one of the worst ice storms in its history. We were thankful that the plane to Orlando was still flying as scheduled because a lot of flights had been delayed or canceled due to the storm.

We were delighted to catch our first glimpse of our accommodations for the week. They consisted of a 3-bedroom,
3-bath villa with an enclosed balcony overlooking a small pond with ducks and beyond that, a large lake.

Nathan and Sarah had their own rooms with big beds, perfectly suited to jumping.

Our master bathroom had a Jacuzzi and one night we lit some candles and put Sarah in there along with tons of bubble bath. She had so much fun in that "cachoozie," which is what she called it!

The villa had been stocked with all sorts of chips, candy, snacks, and soft drinks; there were also several wrapped gifts waiting for the children. The spoiling had begun!

Before we went out and hit the theme parks, we attended the two Sunday morning services at First Baptist which runs about 6,000 people. They asked our whole family to come to the platform in both of the services so that Steve could share a little bit about the journey we've been on this year; they also asked him to talk about how, as a family, we keep Christ in Christmas.

Here's the pastor (Rev. Jim Henry) and a choir member.

The congregation was incredibly dear and responsive, giving us a standing ovation, laughing at the jokes, wiping tears from their eyes, coming and speaking to us after the services and offering hugs, prayers and compassion. We were humbled and touched by the way they took on our burden as their own.

It was also very touching that before Pastor Henry preached in each of the two services, he called Sarah to come back up to the platform by herself. Then he and the music pastor knelt on each side of her and prayed for her healing.

During the prayer Sarah's pale, brave face was flashed up on the large TV screens showing her eyes closed tight as her little girl heart echoed the pleas of the pastors for mercy and for healing in her life.

The main highlight of the trip for Steve and me took place that evening as we attended a production of the church's singing Christmas trees, one of the most incredible musical presentations we've ever seen. (And we got to watch it from a special front row seat.)

There were solos, duets, trios, a children's choir, a youth choir, a bell choir, drama, dance, a fabulous narrator, costume changes, flags, special lighting effects, and a magnificent pipe organ. It was enough to give us goose bumps on our goose bumps!

Before the concert began we were invited back to the choir room to meet the choir members (including the youth and children's choirs) since they were the ones who had made the trip possible. We walked into the room filled with over five hundred people and love so thick it could be felt.

Once again, we were amazed that total strangers would take on our burden in such an intense way--those sweet people smiled and laughed and cried with us as we stood on a small platform in front of them and tried (inadequately) to put our feelings of gratitude into words.

They even gave Nathan a (well deserved) ovation for the wonderful big brother he's been through all of this.

After the concert we were given a backstage tour of the production; since we had been especially intrigued by the huge pipe organ, the organist graciously took us all on a tour of the pipe room. Then he brought us back to the console where he played for us a little and showed off what an organ that uses over 8,000 pipes and cost 2.5 million dollars can do!

After he'd demonstrated what all the buttons and stops were for he said, "Now if I push this button and play this key it makes a very low sound." What came out--and excuse me for saying this--sounded quite a bit like a whale passing gas.

In the momentary silence that followed that rumbly note Sarah looked around mischievously at us all and exclaimed, "It wasn't me!"

We roared with laughter---the perfect end to a perfect evening.

The following morning we went to Universal which turned out to be the family's favorite park. Steve took Sarah around for awhile so I could hang out with Nathan. In a moment of extreme weakness and mental confusion, I allowed him to talk me into riding The Hulk, which began by shooting us out of a tube straight up in the air, going from 0-60 m.p.h. in about 3 seconds. After being shot out we immediately went into a corkscrew heading back down ... way down. From then on out, it was just up and down and in and out and twisting and curving--one time the coaster actually took us below ground and then spit us back out again.

It has been at least twenty years since I have been on any sort of scary coaster and, although my intention in riding it was to have some "bonding time" with my son, I immediately came to the conclusion that we would have to find some other way to bond like, well, maybe we could ride the merry-go-round?

After screaming non-stop for four minutes (first time in my life I was ever a soprano), we were yanked to a violent stop. There was a moment of complete silence while I caught my breath and checked to see whether or not my heart had exploded out of my chest.

Nathan glanced over at me with great concern and then inquired, "Mom, are you emotionally scarred?" (smile)

Before we left for Florida we found out that Haleigh, a fellow cancer kid whom Sarah befriended on the cancer floor, was going to be in Orlando the same week as we were. The girls were so excited about spending a little time together so Haleigh's mom and I swapped cell phone numbers.

Well, when we got to Florida it turned out that both of us had left the numbers back in North Carolina. Sarah asked several times if we could see Haleigh and I told her that I had no way of calling her and that there was no way we'd run into her when we were going to six different parks and Haleigh was going to many different parks as well.

Sarah said, "Well, I think we'll run into her."

On our last day in Florida, we went to see the Beauty and the Beast, a musical drama. Another person who attends First Baptist arranged for us to have VIP seating and for Sarah to come forward at the beginning of the show and have some of the performers sing to her.

Well, Sarah went marching up there, said her name and conversed for a few moments. After she sat back down we looked up and there was Haleigh grinning at us! She and her family had been sitting way in the back of a crowd of about a thousand; they never would have seen Sarah had she not be called up front.

It was amazing to us that both families happened to be in the same park on the same day and that both families went to the same performance of a musical that was put on many times throughout the day.

So on our last evening of the trip, Sarah and Haleigh got to hang out together, courtesy of an appointment that had to have been organized by their Heavenly Father who I'm sure had a big smile on His face when the two girls first caught sight of each other.

We spent a couple hours that evening walking around the park with Haleigh's family. Haleigh is bald like Sarah but doesn't usually wear a hat OR a wig. Sarah had been wearing her hat and her wig all day but after observing Haleigh she whispered to me, "Mom, do you think I should take off my hat too?" I said, "That's up to you, sweetie."

After a few moments of thoughtful silence, she finally reached up and removed the hat, removed the wig and showed off a big smile of freedom. She said, "I've never done this before; it's fun!"

We had rented a double stroller and the shiny-headed girls sat proudly side by side, receiving quite a few glances and even more second glances. (One man paused to ask, "Are they twins?")

At one point in the evening they looked at each other and chortled, "Bald is beautiful!" It was a fun night and a perfect end to a wonderful week.

Here are a few more miscellaneous pictures from our week.

Even a princess isn't exempt from her daily shots.

Hooked up to her feeding pump and writing in her diary about another day at Disney!

Steve's parents (on the left) joined us for a few days. Kneeling in front are Bob and Betty Kay, Steve's cousin and husband who made it all happen. And on the right is the music minister and his wife.

So now what? Well, we will definitely tuck the week away in the memory box of our hearts and prepare ourselves for the harder memories that are about to be made.

As I watched Sarah laugh and play and enjoy the magic of this week I was so glad that her mind was unencumbered with the details of the pain and discomfort that will follow. While she understands that she has a life-threatening illness, and that she's facing many weeks of separation from her beloved Dad, brother and dog, she doesn't truly comprehend the really bad parts that are to come.

For the next ten days or so until we enter that chapter of our lives, we will concentrate on egg nog and gift wrap, family dinners and bedtime stories. She'll tease her brother and chase the dog and sneak up behind Steve and try to scare him. She'll sit quietly on my lap and look at the sparkling tree and see only the promise of the future.

I'll probably look at the tree and wonder if she'll be here for Christmas 2003; however, she not worried a bit about it. She's a busy girl, full of life, full of jokes and guffaws, full of the rare ability to laugh in the face of cancer and shine with the hope of the future.

It'll be a great Christmas, here at home, here together.

And we might even get Steve "Bing" Smith to sing us a few bars of "I'll be home for Christmas." This year especially, there's no better place to be.

Tuesday, August 3

OLD AND NEW. (PART 2)

Here's the second part of the piece I posted last week that I wrote during November of 2002 when Sarah was still in treatment. I always love to look back at those days occasionally and treasure the joy and health that Sarah is blessed with right now.

But before we look back, here are a few Sarah Shots from the present.

Coming back from a walk with Snowy.

This was the first time I had sent her into the grocery store by herself. The one important item on the list? Blueberries. (Can't have summer oatmeal without blueberries.)

Being an inveterate picture taker, of course I couldn't let this great occasion go by without getting a shot of it.

NOVEMBER, 2002
(Written during one of Sarah's blood transfusions.)

Even with Sarah's low blood counts, she has still been fairly energetic and in good spirits. Recently I decided to take her to Toys R Us and I made up my mind before walking in that I was going to give her an entire hour to wander around whatever aisles she wanted to. I was not going to say even one time, "Please hurry, Sarah. We need to go, Sarah. Have you made up your mind yet, Sarah?" (Do those words sound familiar to the rest of you moms and dads or am I the only one who utters those particular parent-isms?)

I got to thinking that it must really be a drag to be seven years old and have an adult constantly hovering over you making impatient noises. I hadn't realized just how ingrown the habit of hurry can become.

It was such a joy to actually slow down and to watch my child be allowed to meander through the aisles of childhood, to deliciously contemplate this doll or that game, to not have to dash up and down the aisles on some ridiculous schedule. It turned out to be a special, relaxing hour for us both.

After that experience I thought I had learned my lesson pretty well until I took her to K-mart with me last week. She had a little money and wanted to take a detour down the toy aisle. I had a billion things to do but I told her it would be okay and I reminded myself not to say anything as she sauntered along gazing at the shelves of toys. However, she must have still sensed "something" because she suddenly turned to me and inquired, "Mom, are we in a hurry?"

I thought, "Youch. Have I gotten so bad that I am actually emitting hurry-up vibes from the very pores of my skin?"

I gave her a little hug and said, "Sarah, we aren't in a hurry at all."

And when I told her that I actually started to feel less frantic and realized that ten minutes in a toy aisle was not going to ruin the rest of my day. With all the hard times Sarah has been through this year, it's especially important for her to occasionally be able to retreat into the world of make-believe. She needs to see dolls with blond curly hair and she needs to look at smiling, healthy, cancer-free children smiling at her from the cardboard toy boxes. She needs to disappear briefly into the world of Barbie where everyone lives happily ever after. And my gift to her, at that moment, was to let her do it. It was a small but important thing to do for my precious, not-in-a-hurry princess.

Even though Sarah likes toy aisles as much as the next kid, she doesn't usually need a lot of stuff to have a good time. I came into the trailer the other day and saw a piece of paper taped to a wooden pole in our living room with a face drawn on it. I thought it a bit strange but figured Sarah had some plan for it. A little while later I was coming out of our bedroom and looked into the living room. There was Sarah, with a long scarf wrapped around the pole, her hands delicately grasping each end of it. She was facing the drawing and dancing back and forth very elegantly and graciously.

I said, "Sarah, what are you up to?"

She pointed at the face on the pole and said, "I'm dancing with my fella!"

And away they twirled, Sarah and Mr. Wooden Pole and a pink scarf--all the ingredients for a perfect Thursday afternoon at home from the hospital.

Well, this is now two days later. And guess where we are? Still in the hospital! During the whole day of transfusions, Sarah's temperature had been around 99 degrees; however, right as they were getting ready to discharge her they took her temp one more time and it was 102.3!

She heard that number and being the medical veteran she is, knew that it wasn't good news. (We had been looking forward to getting home and putting up our Christmas tree that evening.) Sarah burst into tears and wailed, "Oh, I just wanted to go home so badly!"

The poor nurse who was taking her temp felt terrible about it and of course, I wasn't feeling too cheery myself.a We had our trip to Disney planned in six days and knew her "fever stays" could last anywhere from 5-10 days. We didn't know what kind of crimp that would put on our plans. I called Steve to break the news to him and since I hadn't packed anything for a stay, he gathered up a few things and drove over to spend the night so that I could go home to be with Nathan for a little while and pack for the week.

While waiting for Steve to get here, I glanced over at Sarah in her bed, worn out, dispirited, curled into the fetal position, her eyes fastened on some distant point a million miles from us, the marks of fatigue and discouragement stamped all over her little body. The look on her little face said, "I have HAD it!"

Unfortunately, it was right at that moment that the nurse came in with Sarah's nightly shot. Sarah roused herself out of her lethargy long enough to take her bandage and Emla cream off (Emla numbs the skin where a shot is given) and gear up for yet another injection. She is always very specific in her instructions for shots; she likes the needle to be put in quickly and the serum to be injected very slowly. In her foggy state of mind, however, she forgot to give the instructions to this nurse until the needle was actually in the air heading in her direction.

Sarah suddenly shouted, "Go slow. Go slow!"

The nurse thought she was talking about the insertion of the needle so she slowed way down which is not the most efficient way to give a shot--as I have learned from my own "vast experience" in shot-giving! The needle went in very awkwardly and then once it was finally in, she pushed the plunger very quickly which was the exact opposite of what Sarah prefers. (And we try to take her instructions in this area very seriously because it's one of the few areas of her life that she has control over.)

Well, that was the last straw for my little warrior. She let out a wail that could be heard in Montana and then worked herself into such an emotional state that she threw up. I patted her back and wiped her mouth and did my best to calm her down.

Finally when she was done vomiting, Sarah fastened her feverish, frantic eyes on me and said, "Comfort, Mommy! I need comfort!"

Well, you're probably thinking that what I was already doing was comforting, but in Sarah's and my language there is comfort and then there is Comfort. I knew without another word what she was asking for. I scooped her up in my arms and took her from the bed to the couch in the room where I settled her on my lap, her head against my chest. I put her special blankey over her shuddering shoulders and spoke soothing words as I stroked the soft, beautiful skin on her head. As I saw her tears stop and felt her body relax I thought, "Well, I'm not writing any songs that are making me famous, and I'm not doing 150 concerts a year, and I'm no longer a full time singer/musician criss-crossing the nation. But there's one thing I'm still good at and that is giving comfort.

And you know what? In this chapter of my life, it's enough.

_______________________________

Tuesday, July 27

OLD AND NEW

I'll start with the New: a few recent pictures of Cool Cat Sarah.

She isn't called Princess Groovy Chick for nothin'!

The Old comes in the form of a post written during her earliest treatment days. I happened across it on Steve's computer this morning and was instantly transported back to that time when life was so full of stress and trauma.

But even in the midst of trauma, we found many reasons to smile. And you know what? Smiles given and received in the midst of heartache are far more valuable than smiles tossed around in happy times.

Trust me. I know.

Anyway, here's Part 1 of the post. (I'll post part 2 in a day or two.)

November 29, 2002

I'm writing this from Sarah's temporary hospital room where we'll be for the next 6-8 hours as she gets a platelet and red blood transfusion. Her counts are at rock bottom; although there has been no fever so far, it will be nothing short of a miracle if she makes it through the next two days without one.

While we wait for the platelets to be started, Sarah is diligently doing her school work. It's a challenge for me to teach a child who is sick and often doesn't feel well. Even though all the other kids are on Thanksgiving break today, I figure that since she's feeling pretty good, she should spend at least a little time on her lessons. I know that when we get to Duke for transplant, it will be even more of a challenge to do school so I'm trying to maximize the time I have.

When I schooled Nathan on the road, we rarely missed a day even in the midst of our wild, unpredictable schedule. And now with Sarah, the disciplined, Type A part of me wants to push to do school while the compassionate mother side of me wants to just forget all about it when she's feeling nauseated and weak and just isn't up to it.

It's quite a balancing act to know when to back off and when to forge on ahead. Fortunately, she's a quick study so even with the days missed this year I think she'll still come out okay.

Nathan enjoyed his four days off from school for Thanksgiving break. I picked him up at noon on Wednesday and as soon as he got home, he buckled down and got all of his homework done. When it was all finished, he sighed happily and said, "Now I can relax!"

A couple of nights ago Steve was gone and I had put Sarah to bed at about 8:30. I thought, "Oh how wonderful. I can go to bed early with my electric heating pad and my book and luxuriate in rare, blissful silence."

And then I got to thinking about how little time I get to spend with Nathan these days and how that time will shrink even more when Sarah and I go to Duke. So I put aside my dreams of solitude and said, "Hey Nathan, do you want to play some Racko?"

His face lit up as we launched into a spirited, hour long tournament. It was so special to spend that time with him, laughing and relaxing and forgetting for a moment the cloud of cancer that overshadows our family.

Nathan continues to be wonderful in helping Steve and me care for Sarah. Recently I got up about 6:30 am and stuck my head in the bedroom door to check on Sarah. I noticed that her feeding pump was empty and that her feeding tube had been disconnected from it. I knew I hadn't heard Steve get up and do it so all I could think was that Nathan had unhooked her.

That's perfectly fine except for the fact that if her feeding tube isn't flushed as soon as it's disconnected, it will clog and a new one will have to be put in.

I couldn't quite imagine a sleepy, on vacation, 13-year old boy remembering to go out to the kitchen, fill a syringe with water, and flush Sarah's tube so I figured I'd better hurry and get it flushed. I filled the syringe and whispered, "Roll over Sarah, so I can get to your tube."

She looked at me sleepily and muttered, "Nathan already flushed it."

What a kid! He knew how tired Steve and I have been having to get up with Sarah 5-6 times a night with vomiting and diarrhea, not to mention having just spent three days in the studio. Instead of waking us up he just went ahead and took matters into his own hands! He's a keeper!

This week for the first time, I had to give Sarah her shot since Steve had stayed an extra day at the studio while the background singers were recording. In the past she has refused to let me do it because in her words, "Mommies are for comforting."

But Steve was going to be gone overnight so I was on deck. I tried my best to act confident and nonchalant while I got everything together; I certainly didn't want Sarah worried about ME! But inside I was quaking and not at all looking forward to plunging a sharp needle into my sweet little girl's leg.

Nathan hovered nearby to encourage me as I did what needed to be done. Sarah didn't cry, she barely even blinked. She just said, "Good job, Mom" while she put on her Band-Aid. Whew!! Another skill to add to my mother resume'.

Part 2 to come!
_________________________________

Friday, July 23

When I wrote on Tuesday that Sarah would be posting some questions and answers "tomorrow," it seems that I forgot how fast time whizzes by when you're not looking!

(And obviously I wasn't looking.)

Here are the overdue answers: (Sarah had them written on time; I just didn't get them posted.)

Q: Just curious if you all brought your own blankets that were at the end of the beds or were they given to you to use? Looks so inviting! -- Kathy

A: New blankets are provided every year, along with a checkered teddy bear--both of which we can take home at the end of the week!

(And Sharon H., one of our CB readers is actually one of the people who has made some of the blankets and bears. Thanks, Sharon!)

Q: P.S. Did you think the counselor was cute? --Aunt Deb

A. Well, dear auntie, I thought he was kinda cute, but later he got to be annoying, so I guess you could say things didn�t work out between us. (smile)

Q: I was wondering if you would ever consider being a counselor? It seems like you would be really good at it.
--Lesley

A: Yes, in fact, I have started considering being a counselor. But after this last week, I have become a bit hesitant, since I saw more of the medical work that the counselors do, and I am not sure if I could handle that. But we'll see!

____________________

(This is Becky again)

Thanks to all of you for your encouraging words in the guest book about the write up Sarah did about her camp experience.

You made her day and MY day, both!

___________________________

Tuesday, July 20, 2010

Tomorrow Sarah will be posting a piece where she answers some of the questions you all asked after her last post.

In the meantime, I have a thank you note from Amber, the young lady we were helping out by voting for her picture.

"Wow ....you guys are amazing. I have over 2000 votes and counting for my picture. Thank you so much. :) I will continue to update Becky on the status of my contest. Again thank you from the bottom of my heart"

Love,
Amber

(Becky's note: It's not too late to vote!)
Amber's picture
_______________________________

Thursday, July 15, 2010

(The following piece was written by Sarah. The pictures at the end are from the 2008 camp she went to--we didn't have many pictures of her from this camp.)

WARNING: THIS POST CONTAINS GRATUITOUSLY LOW AMOUNTS OF FLOUNCINESS

Yes, that�s right. No flouncing, bouncing, or waltzing about here. Just straight, to-the-point in telling about my sixth year at Victory Junction Gang Camp.

No flowery, baroque descriptions or in-depth, thoughtful thoughts concerning my camp experiences. So can�t you tell how good I am at staying on track and not rambling on and on?

After being escorted (and bunny-hopped part of the way) to the �cabin� I would be staying at, Mom only stayed around long enough to chat with a few of my counselors, see what bed I had picked out, and hug my neck. This was because she had a very long journey home and wanted to leave as soon as motherly possible so as not to arrive back in Manteo too terribly late.

Although I am perfectly used to this (as she has dropped me off at camp five times in the past), I will admit that after being at her side or at least trailing behind my parents for the last year, it was a little odd to be left in a semi-unfamiliar place with almost completely unfamiliar people without at least one parent with me. So this is what being a teen means, to be out on your own a little before flat-out adulthood?

Oops, sorry, almost had an in-depth, thoughtful thought there. Moving on before I delve too deep.

Well, some other cabins were playing games outside (namely our male counterparts), but we Richmond girls (our cabins, each containing seven or eight kids, are all named after racing states/cities) preferred to stay inside, in the air conditioned common room. Whilst braiding bracelets, necklaces and the like out of on-hand, brightly colored string, I got to talking with some of my counselors about some of the books we�ve read. Two of them were talking about some sort of Biblically-based romance novel they both adored, and they said that I might enjoy it.

But then there was the question of if the reading would be too hard for me, and I assured them that if I could read ��Til We Have Faces� by C. S. Lewis, I could probably tackle this book. (Unfortunately I have forgotten the title, but I know it had something about grace in it). So then we all got to talking about C. S. Lewis� works, about the Narnia books and movies, our favorite characters and scenes, and this made me feel right at home.

Soon we went to supper, after which was the NASCarnival (I just got the wordplay this year), which included a hot-air balloon ride, carnival food such as cotton candy, slushies, and really good, freshly baked Duncan Doughnuts that we could dip in chocolate and sprinkles if we did so wish.

When that was over, we had our first �cabin chat�, in which we--after getting ready for bed--plopped (whoops, that word was a bit too eloquent, how about something more nondescript?) sat down on our beds, had the lights dimmed, and passed a battery-powered candle around, giving short answers to silly questions the counselors threw at us.

One example was �If you had your own train, what color would it be, what would it carry, and who would be its conductor?� My answers to those particular questions were: the color would be blue, it would be a passenger train, and my dad would be the conductor.

The main point of cabin chat was to get everyone (who needed it, meaning those who were not already dead tired such as my self) calmed and ready to turn out the lights for the night.

We woke up the next morning around six, bright eyed and bushy tailed, ready for what the camp calls �poll position.� (Even after six years of attending, I have not yet figured out what that is supposed to mean�) We got to choose which activity we wanted to go to: they were minor activities like archery, looking at the NASCAR museum thing, going to the Fab Shop (it was a like a salon), and, my favorite and what I chose, arts and crafts.

After breakfast, we went to other activities such as swimming, horseback riding, and zip line (which I absolutely loved), but not necessarily in that order (as I can�t actually remember what the exact order was, as it all tends to run together.)

That night, our group (called the Blue Crew, who were the oldest ones there), were the only ones who got to go bowling at night. I didn�t actually bowl, but I sat with one of my counselors, and we watched some of the others dance to the music and also sang along to the songs we knew.

The next morning, I went to the Fab Shop to become none other than fabulous. There was not a whole lot to do, as I did not want to dye my hair or have my face painted, so my counselor and I resorted to doing each others� fingernails. I painted hers a rose pink and she did mine in green and blue.

That only took ten or fifteen minutes, and since breakfast would not start for at least twenty more minutes, we decided to go to the NASCAR . . . place. I really don�t know what it�s called, but it features remakes of famous racecars and life-size cutouts of famous drivers. Now doesn�t that back my deep knowledge of the racing world?

Once there, we were invited to join in on a �friendly� card game of Uno, along with two male counselors and two other girls from my cabin. Like my big brother, these two counselors in question were collage-age, and thus I was wary of any mischievousness they might have been up to. And it�s a good thing I was for, lo and behold, two minutes into the game, I drew a card from the pile, and, written boldly in black Sharpie, was a zero next to the 2 on the �draw two� card. They couldn�t be serious. Draw twenty cards? That was about half of the cards in the game! But of course, they were serious, and I ended up--you guessed it--drawing twenty cards to my amalgamated hand of cards.

After breakfast, I was a little antsy to hear that the next activity of the day was going to be the great and mighty Zip Line. Now I had been to said great and mighty Zip Line the last year I had been there, back when I was twelve, and the great and mighty Zip Line had successfully succeeded in scaring me right out of my want-to-go-down-it.

But this time around (sorry, I�m going to have to get a little thoughtfully in-depth here), I told myself that one of my book characters--of my very own imagination, blood, sweat and tears, whom came from my mind, down through my fingertips, in the letters of my keyboard and onto my word processing software--would go down this thing in a skinny minute, lickety-split because they�re brave and adventurous like that.

So, I put on my �big-girl-pants� (or rather, the unfashionable harness that would keep me from falling, twenty feet down, flat on my face once I was hooked up) and raised my hand when they asked who all wanted to participate. I am so glad I did! It was all such a rush, even as I waited in line. From there I was hooked up with two cables in the front and back and finally, I sat down on the edge of this deck thing and leaned forwards a little. Once that was down, I went automatically zipping through the air, clinging to the rope for dear, sweet life, and whooping and not to mention hollering the whole way down.

One more story, and then I�ll be done with my non-flowery and non-describing (yeah, right) description of my week. I believe it was soon after the great and mighty Zip Line, Wood Shop activities, and lunch that we went to the camp-famous water park. After being uncomfortable in my in my swimsuit and not actually being in the water for a good bit of time, I believed it was high time to get in the water.

I was having bunches of fun, (other than tripping a few times on unseen, underwater things and bashing a knuckle against the wall of the Lazy River while trying to float on my back) until my counselor and I decided to go to the motorcycles and the racecar.

Yes, the motorcycles and the racecar. The motorcycles stayed in place, but you could turn the front wheel left and right a little and, when you pressed down on the gas, water would shoot out the front lights.

But the racecar, oh the racecar, was the battlefield of the water park. It was a hoodless racecar, and there was water spurting out in all directions, as if the vehicle had sprung some terrible leak. There were leaking pipes and flying hoses that you could make do whatever you wished.

Well. The very same counselor from the NASCAR building thing who had been very Sharpie-happy (not to mention the same guy with whom I bunny-hopped with before) and maybe someone else decided to ambush my counselor and I, grabbing hold of hoses and putting their thumbs to the pipes so as to make the water come flying, flooding, and fwooshing our way. My counselor and I tried to defend ourselves, but it was too late. We were already momentarily blinded and laughing too hard to do much of anything--defensively or otherwise. And thus, we surrendered and ran away screaming. Oh, well.

So roughly (as I could not remember ever little single thing we did), that was a half-week in the life of a Victory Junction Gang Camp camper. Hope you enjoyed my non-thoughtful, non-flowery account!

(Becky�s note: Hurray, Sarah! I loved it!

Sarah just popped her head into the room and asked me to add one thing she forgot. She actually went to the kidney camp this year because the cancer camp had already filled up. It was interesting for her to get to know kids with a different medical background and compare notes.

One thing that took her completely by surprise (and really opened her eyes to what other kids deal with) is that during the whole week of camp, the cooks did not use any salt in the food PLUS there were no salt shakers on the tables. Sarah didn�t realize that kids with kidney disease were not allowed salt in their diet.

Her week at that particular camp helped her to truly appreciate her fellow campers� journies and ALSO to truly appreciate the salt shaker when she got back home.)

___________________________

Friday, July 9, 2010 2:30 PM CDT

SARAH AT VICTORY JUNCTION GANG CAMP

I dropped Sarah off at camp on Tuesday afternoon. As always, the hardest part of the whole day was the last hug and then turning around and leaving without her.

I really and truly hate that. But I really and truly love the fact that she got to go this year. (The cancer week filled up and she was on a waiting list. We got a call that the kidney camp had a few slots open and she was slid right in there at the very last minute.)

Here are a few pictures.

These are all inside the cafeteria/multi purpose room.

Believe it or not, this room is in the clinic. Isn't that the most colorful hospital room you've ever seen? Each camper has a session with a nurse to see if they have any special medical needs or medications. So thankful to tell the nurse that Sarah has NONE of the above.

The counselor that led Sarah to her cabin said that when they cross a certain road, everyone has to bunny hop. So they did!

Entering the cabin.

One of the girls' dorms.

Steve picked her up today and I got to talk to her on the phone. Sounds like she had a great time. (Bunny hop and all!)

We'll fill you in on more of her experiences after she gets home.

Monday, July 5, 2010

I don't do this kind of thing real often but if you have a moment, would you please go to the link below and vote on this picture?

Amber's photo

It was taken by Amber, a blog reader who I've gotten to know over the past years through e-mails. Amber is a young lady who deals with unbelievably difficult physical and medical challenges; one of the things she loves to do to cope with the tough stuff is to take pictures.

She submitted this one in a contest and I'd love it if our Caringbridge family could help her win.

Thanks so much!

_______________________

Sunday, July 4, 2010

Sarah has always loved dressing up for holidays. In this picture, she is very epitome of Miss Patriotic Lady!

Her shoes even had stars on them.

And what does the well dressed young lady do once she's all patriotic and pretty?

She folds church bulletins, that's what!

It's an occupational hazard of being a pastor's daughter.

___________________

Friday, July 2, 2010

A GIRL AND HER BIKE

Some of you who have been hanging around here for a few years might remember this picture.

And this one.

Since Sarah had several physical side effects from cancer treatment (including balance issues) she took a little longer than normal to ride a two wheeler without training wheels.

But she finally did it! And when she did, she glowed brightly enough to light up the sky.

Fast forward about three years and a couple inches and the 20-inch bike she rode way back then no longer fit Princess Groovy Chick.

However, when we had her try a few larger bikes, she got just a bit freaked out over their size and sadly, several attempts at riding them ended up in tears.

Thankfully, Steve is a resourceful sort of guy who doesn't give up easily and he tracked down a bike shop in the area that sells a different sort of 26-inch bike; something about the way the pedals are a little further forward causes the seat to be closer to the ground.

Although I don't understand all that technical jargon I do understand one thing very clearly. This was the bike for my girl!

She loves it! And best of all, she can ride it without tears and trauma.

She's only been riding the bike about a week but yesterday she decided that she was going to take it out on a solo voyage. All the way to the bookstore in downtown Manteo.

And off she went.

She didn't know it but my heart was pedaling right along beside her. If indeed, a heart can pedal.

And even with a few wrong turns and unplanned detours, my daughter grew up fifteen years in the ninety minutes she was gone.

I can't say I was real thrilled about her growing up that fast but I was thrilled to see her accomplish such a big thing.

I'm proud of my Biking Beauty. And I know that each of these milestones takes her one step closer to independence, and going to college, and moving away, and getting married, and . . . sniff.

I think I'll stop now.

________________________

Saturday, June 26

ACCCKKKK!!

Has it actually been eleven days since we've posted anything? Time's fun when you're having flies! (Or . . . something like that.)

Sarah and I are still working on getting a "posting rhythm" figured out between the two of us. It's comin'!

In the meantime, we want to thank our loyal Sarah's Spot Friends who faithfully stop by to check in on us. Hard to believe this site has been going for over seven years now. I read somewhere that the majority of bloggers have been blogging less than five years and most bloggers who start a blog quit within the first year.

So it's nice to have some longevity here and know that we're the "oldsters" on the block. (Ug. Just what I needed to be called. An oldster.)

Well, let's just say I'm the oldster and Sarah is the youngster; that way, we have all the bases covered.

I had written earlier about Sarah's graduation from 8th grade and how disappointed she was that she hadn't made the A/B Honor Roll again. We figured it had something to do with her math grade and sure enough, when she got her grades in the mail a few days ago, we saw that her math grade had just barely dipped down into the high "C" range.

And yet when you recall that she started 8th grade last August at a 6th grade math level, she has really done an amazing job this year in catching up.

Have I ever mentioned that I'm proud of her? I have? Well, let me just mention it one more time! I think she's a pretty spectacular young lady.

She and I were sitting out on our porch swing recently and I had my camera nearby. She said, "Let's take some pictures."

I said, "No! We can't! My make up has all disappeared!"

But we went ahead and took the pictures anyway. (Obviously, the youngster in the family has more clout than the oldster.)

So here we are: Stunning Sarah and Makeup-less Me, enjoying a summer evening on our front porch swing. When I think that she never should have even survived to be this age, I'm extra, extra thankful for the chance to swing with my amazing gal.

_____________________

From the Guestbook:

Kristina had a few comments she'd been saving up:

Question 1:
Is Sarah going to do more 'this is how I remember' stories? I really enjoyed reading about her life from her point of view. It could be any story she remembers (even a recent one - how about the loud and annoying graduation guys, or helping her Mom through surgery/reconstruction?!).

Answer 1:
Kristina, that's one of the things that Sarah and I have been working on. As much as she loves to write, it seems that it has created a bit of stress for her to try to write her memories.

Her first issue is that she can't tell if the memories she's writing are her own memories of the event or if they're the memories that she read about from my own perspective here on Caringbridge.

And the second issue is that one of the after effects from her very aggressive treatment is short and long term memory damage. As a result, sometimes it's stressful for her to try to remember something from the distant past when her brain just won't co-operate.

And so I think the idea of having her write about more current memories and happenings is a good one; that way she doesn't have reach back quite so far.

Question 2:
At some point (and I think it may actually have been last summer?) Sarah had a list of things she wanted to accomplish over a certain time period, like drinking British tea. Does she have another list for this summer?

Answer 2:
That's a great question. I'll see if Sarah has anything else on her Accomplishment List this summer.

Question 3:
This is probably a weird observation, but is the wooden shoe organizer in Sarah's closet backwards? I have one that I think is exactly the same, and it has one side that is rough, exposed wood; the other side is finished in the same shiny white melamine as the rest of the shelving.

Answer 3:
Although I haven't gone up and looked at her shoe holder since reading this question (she is on the THIRD floor, after all!) I would not be at all surprised if she and I put in the shoe holder backward. And we probably never even would have noticed!

Thanks for pointing it out; we'll have to get it turned around!

She's having so much fun getting her room settled and organized. I'm just glad she's on the third floor and not me. I'd never survive all the stairs!

Well, that's it for the moment. Sorry again about the big gap in posts; we promise to do better.

Have a happy summer!

_____________________________

Tuesday, June 15, 2010

MESSY. CLEAN. AHHHHH.

Sarah is a very creative, free thinking young lady. Many times she comes up with observations or comments completely out of the blue and I'll think, "Wow. Where did she come up with that?"

Many times, creative people are not, shall we say, gifted in the area of being neat and orderly. Sarah would be one of those people. She's kind of a flinger of things and a non see-er of various messes that arise, right beneath her nose.

Her delicious disregard for disorder is one of her many charms.

However, even Sarah got a little bit overwhelmed a few days ago when her room started looking like this.

Please especially note the two-toned chest of drawers in the corner. Steve was in the process of painting the whole unit (which we've had for ten years) white so that it would match her room and give her more storage. You'll see the "after picture" further down the page.

The reason the mattress for her daybed is out in the middle of everything is that we had just moved it back upstairs after it had been used by a guest. Usually she doesn't have mattresses lying around for no reason.

She also had a good number of boxes here and there that had never been unpacked from the move and it was all just getting to be a bit . . . much.

And so, what did she do? She decided to call in the professionals. She decided to call in Mom, The Clutter Buster.

She and I spent 4 or 5 hours over the course of a couple of days cleaning and organizing and getting rid of stuff.

Here's what we ended up with.

The finished chest of drawers is in the corner. Didn't Steve do a great job?

Sarah thinks that she's glad she asked me to help her get everything cleaned up but that's only because she hasn't gotten the bill yet.

___________________________________

Saturday, June 12

GRADUATION 2010

Here's the Lovely Graduate before the ceremony.

Seeing her escort come out the door and getting up to meet him.

The Lovely Graduate and The Handsome Dad.

So far, so good, right?

Unfortunately, the evening kind of went downhill from there. Not terribly downhill, mind you, just a little downhill.

Downhill Causer #1

The gym was quite noisy and echo-y. Ever since Sarah's cancer treatment, her ears (and nerves) have been hyper-sensitive to noise. She can stand about fifteen minutes of it before going stark raving mad. And the ceremony was 90 minutes. And very loud.

Downhill Causer #2

Sarah was seated between several especially rowdy boys. I guess in Sarah's mind, a graduation ceremony is supposed to be sort of dignified and special, so she wasn't quite prepared to be surrounded by all manner of hootin' and hollerin' and loud conversation by the aforementioned fellas.

She was just a wee bit irritated--even though she realized they were just acting like normal boys.

Downhill Causer #3

Sarah really had her hopes up that she had made the A/B Honor Roll again for the fourth quarter.

As each student's name was called, any honors he or she had earned were also mentioned. When Sarah just heard, "Sarah Smith" and that's it--no "A/B Honor Roll" mentioned, she was really disappointed. (I think what happened is that her math grade dipped down to a high C.)

As the ceremony went on (and on and on) I looked at the back of Sarah's head and shoulders and said to Steve, "Sarah is not doing well."

He said, "How can you tell that by looking at the back of her head?"

I said, "We moms just 'know.'"

And sure enough. I was right.

I was very proud of her for overcoming her disappointment and irritation and keeping a cheery smile in place for the meeting and greeting after the ceremony.

She was blessed to have Patricia, her girls' group leader from church, come to the ceremony.

Here she is with Taylor, a favorite friend from school. (In fact Taylor gave Sarah the dress she was wearing because she had grown out of it.) Taylor's mom teaches French and Spanish at the High School and is the music director at another church on the island.

Our actual ceremony pictures didn't turn out real well, but I'll post one anyway.

Sarah and the Loud Fellas.

After all the drama, "ear weariness," and disappointment, Sarah was in tears by the time we got back into the van to go home. A little tired, a little overwhelmed, a little disappointed--all rolled up into one Princess Groovy Chick Spate of Sadness.

Thankfully, Sarah is not one to muddle around in angst very long and after we'd been home only about ten minutes, her smile re-emerged and the three of us (plus Snowy) sat in the living room for about an hour, laughing, talking and reminiscing about her 8th grade career.

She went up to bed with a smile, partially caused by our time together and partially caused the fact that she knew she would be able to sleep as late as she wanted the next morning.

Summertime, sweet summertime.

Sarah, sweet Sarah.

Happy Graduation, baby girl!

__________________

Wednesday, June 9

Tonight if you hear loud wailing and sniffling sounds from the direction of Manteo, have no fear.

It will just be me. Attending the 8th grade graduation of my Miracle Girl.

As of this time tomorrow, Princess Groovy Chick (whom some of you have "known" since she was six years old) will be a High School freshman! A freshman, I tell you. In High School! (Did I already mention that?)

The difference between saying, "My daughter is in Middle School" and "My daughter is in High School" is huge. Really huge.

High School has to do with dating, and driver's license, and college prep and . . . and . . . growing UP! And when High Schoolers get grown up, they LEAVE. Like a certain Nathan Smith did!

Can you blame me for sniffling through the ceremony tonight? I hope I don't have a complete nervous maternal collapse and fling myself on the floor in the middle of the gym and wail, "Make it stop! Put her back in the sixth grade, will ya?"

In fact, I asked Sarah a week or two ago if she would just go ahead and fail eighth grade so that she could stay in Middle School longer; for some odd reason, she chose to ignore my pitiful, plaintive plea.

And tonight she will finish 8th grade. And tomorrow she will be a freshman. In High School! (Did I already tell you that?)

I'm calm. I'm taking deep breaths. I'm being thankful that a child who had the worst stage of the worst childhood cancer is alive and doing fabulously. I have plenty to be grateful for.

But I have plenty to sniffle over, too.

And so sniffle I shall. And of course, I'll also take 1.4 billion pictures. Because I just can't help myself.

And speaking of pictures, here are a few I've taken of her recently, in a vain attempt to try and capture her childhood before it gets away from her.

When Steve was out of town for four days last week, this was the greeting he got when he arrived home: A Sarah-drawn, chalk work of art saying, "Welcome Home, Daddy."

And a few more shots . . .

Happy eighth grade graduation, daughter of my heart!

Sniff.

______________________

Thursday, June 3

Here's some more poetry from Princess Groovy Chick. These are a bit more light hearted than the two I posted earlier in the week.

A Fish Life
By Sarah Smith

What must it be like to be a fish?
Soaring through water,
Slipping down rivers,
Seafarers, naturally
They make waterworks clockwork
Make it look all too easy
Like anyone could do it
Sure, anyone with gills and a tail.

But the life of a fish
Must not be all that easy
First, there are the fishermen,
Who make their living off their hides
And their meat.
Don�t mind the tasty-looking bait
Go about your own way
And you should be fine,
Or at least in that regard

Oh, and then the bears
And birds and others aplenty
Looking for a tasty specimen
To make lunch out of
Just swimming around
Minding their own business, I�m sure
And suddenly
A perfectly oversized paw
An impeccably pointy beak
Comes out of seemingly nowhere

Turn!
Twist out of harms way.
Flip for one�s life!
Swish! Parry!
A disgruntled moan
Of animalistic frustration
Or a birdlike cry of defeat from above.

Indeed, being a fish
Might not be all it�s cracked up to be
But to be humans, as we are,
How lucky we must be

___________________________

One of our family's all time favorite movies is The Princess Bride. We've watched it over and over and quote from it frequently.

Part of Sarah's poetry assignment was to write a poem based on a favorite book or movie. It didn't take her long to decide which movie to choose!

�The Princess Bride�
A Tribute
By Sarah Smith

A fairy-tale of wonderful characters
All should know them
A story of love, adventure
True happiness and worry
Either the movie or the book
Whichever you choose to endeavor
Are both worthy of at least a look.
The tale spun by S. Morgenstern
Made famous by the book and the movie
Brought to life by a Mr. William Goodman
Makes even the well-learned
Want to know more and more
Of the humorous chronicle
Containing enough silliness to send a floor in
That just happens to take place in the lands of Guilder and Florin

All should know
Of the good giant Fezzik
Who could make a rhythm anytime
And of the wry, upright Inigo
Who, when in his hands,
Could make swords dance.

All should know
Of the sweet romance
Of the farm boy Wesley,
And the beautiful Buttercup
Who bravely overcame
The imprisonments, an unwanted marriage into royalty
And even death itself

Past bloodthirsty eels,
Unusually sized rodents,
And lightning sand
All for each others hand.

I could go on
On and on and on
And perhaps, if given the chance,
Never, ever stop
But for the sake of this poem,
And for the sake of this poem alone,
No further shall I digress
As this amazing story
Gives new meaning to the term,
�A damsel in distress�

__________________________

Monday, May 31

THE POETRY CORNER

Sarah was assigned several poems to write last week in school; we'd like to share a couple of them with you.

Fingernails
A Free Verse Poem
By Sarah Smith

What is of the past
Has passed and can�t dually pass
What makes the world go round
Is not built on memories of mistakes
Nor on wrongdoings of the past
But on the works of hard workers.

Whatever deeds of the past
Committed of one�s hands
Whether right or wrong
Are all done for a purpose

So whether that purpose
Is regretted or not
The tarnishing or garnishing
Of one�s fingernails
While committing the actions
Is perhaps what matters most,
The journey
And not so much the destination.

What happens to make other things happen
What is done to make other things done
Is what causes dirt to gather
Under fingernails from the work
For the right cause
Or under the toenails from miles run
In the right direction.

Maybe everything did not look as it should have been
At the moment it was born in
But everything was headed towards a happier ending
A greater good
Than what was originally intended.
Although it may not exactly seem this way
In real life

Fingernails are not hard to buff
To cleanse, to make beautiful again
Some actions, deeds, words
May seem unforgiveable
Unable to be cleaned
Unable to be forgotten
And handed over to the past
Life does go on, and of that I am sure.

A Light
A Narrative
By Sarah Smith

When all is lost to frost
In the darkest of darkness
And in the very coldest of cold winters
When hope seems all but present
Glittering, glimmering
A shimmer among stalagmites
And stalactites of tall ice
A light will be seen
Spotted from a distance
Wavering, nervous, despite itself
From far off
From whence there was none to be seen.

It will overtake deadened senses
Numbed by time gone by
Remind the world of its color
Of its beauty, of its true magic within
Embodied by light
Not shunned by dark
Born of warmth
Not cast out by cold
Remind it of how things once where
Restore the lost
To make them new
Newer than perhaps they ever were.

It will come to drive away the clouds
Send them rolling to the hills
Make them wish they never had formed
To block out the sun.

The light
Borne from a distance
Now close up
Will melt away the snow.

She wrote a couple more poems that I'll post I'll post later. In the meantime, enjoy our resident poet!

Oh, and just in case we neglected to mention this fact before? Sarah is actually a twin!

Or not.

_______________________

Tuesday, May 25

URINE TEST RESULTS

We got Sarah�s urine results back last night. Anything under twelve is normal and Sarah is at THREE! When she was diagnosed, those same tests came back at four hundred which tells you the massive amount of Neuroblastoma she had in her body at that time.

So we had a lot of happy rejoicing to do last night.

Hurray and hallelujah!

_______________________

A DAY AT DUKE

Sarah and I enjoyed our road trip to Durham last week--well, as much as one can enjoy a road trip that involves a hospital visit.

We're used to just driving one hour to Duke; now it takes
3 1/2 hours. Thankfully, we no longer have to go there very often, so it's not so bad.

We went straight to our hotel room when we got to town Tuesday night. After unpacking a bit, and reading a book together, we hit the hay in our lovely, cushy, comfy queen beds. Sarah even graciously put up with my white noise machine which accompanies me to every sleeping opportunity that I ever have.

The next morning, Sarah was awake, out of bed, dressed and ready to hunker down with her latest book. What a great way to start the day--reading!

We were due at the Neuropsych testing at 9 am and didn't leave there until noon. Poor Sarah. Her brain was absolutely fried. From IQ testing, to memory testing, to ethics questioning and everything in between, she was one tired gal by the time we left.

We headed back to the hotel for a 20-minute nap (well, I napped; she read) and then checked out and drove ten minutes to Duke for lunch. The Children's Hospital there is so lovely; I always enjoy the creative decor.

We hadn't been in the building more than two minutes when we heard someone say, "Sarah Smith? Is that you?"

Turns out it was a woman who used to be a nurse when Sarah was on the transplant unit seven years ago! (She has since moved but was back at the hospital for the day.) She and I have e-mailed back and forth a couple times, but I had no idea what she looked like so I was so glad she saw us and said something. It was fun to visit with her for a few minutes and especially fun to see someone from way back in that chapter of life.

And speaking of that, after getting lunch in the hospital cafeteria, we decided to take a few moments to head up to the transplant floor.

It's a bit complicated to get into the actual unit. First of all, you have to scrub your hands thoroughly.

Here is Scrubbin' Sarah.

Then you have to don cute little paper shoes which NEVER seem to match the ensemble you're wearing.

And then even after all that, you can't just waltz right onto the unit because if the door from the outside hall into the washing/booting room is open, you have to wait for that door to close before pushing a button to open the door to the actual unit. They are VERY serious about germs there and well they should be, since it doesn't take much to adversely affect the children whose immune systems have been destroyed.

After Sarah and I were sufficiently washed and booted and the correct doors were closed and opened, we entered the transplant unit. I can never walk into that place without being swamped by memories of the twenty eight days we spent there in January of 2003. To see the medical equipment and the nurses and the small patients and the worried parents--there are just no words to adequately describe it.

As soon as we checked in, the nurse behind the desk said, "Hey, I know you! You were up here on this unit!" (How they remember stuff seven years later, I'll never know.)

Incredibly, there were several nurses in the vicinity when we walked in who ALL remembered Sarah. They gathered around her and oohed and ahhed and made her feel like the Queen of the World. Such sweet, sweet people up there.

And to make "Old Home Week" all the better, Dr. Driscoll, Sarah's oncologist happened to be up there as well. Someone ran and got him and we had a happy reunion with hugs all around. He keeps on saying he's going to attend Sarah's wedding. Let me tell you, those are wonderful words to hear from a doctor who deals with a disease that kills the majority of his young patients.

Of course, we had to take a few pictures to celebrate the moment.

Here's Sarah in front of her old room: 5202. That's a room we'll never, ever forget; a place where we fought a horrific battle for her life--and won.

There were so many sights to take in during our brief visit. We watched one little girl come by who must have been about four years old. Of course, she was bald but her baldness was completely outshone by the sparkly, pink ballet shoes she was wearing. Her dad was pushing a pole with at least 7 different machines on it; how well I remember those poles with their life saving loads.

What struck me the most, what I will never forget about that little girl was her poise and confidence walking those walls. Her little sparkly shoes made their way down a hallway that had been walked by numerous children who are now walking the halls of heaven. Her four-year old face was calm and serious and focused and she looked a lot more weary than a four-year old should be.

But the most memorable thing to me was the darling, sad, poignant way she had one little hand behind her back, grasping both sides of her pink hospital gown to keep it from flapping open in the breeze. I looked at her and said to myself, "What a veteran!"

And then I teared up as I thought, "No four year old should ever have to be so adept at being in the hospital that she has the presence of mind to keep her gown closed."

I watched her sparkly, pink slippers disappear around the corner and I thought of another bald little girl dressed in pink who had walked those same halls seven years ago

So many memories. So many tears. So much to be thankful for.

After we had said our good byes, we got back on the elevator. As we moved to the first floor, the lady who was on the elevator with us said, "I hope I'm not being nosy, but was your daughter once on the transplant floor?" (She had been up there with us; I just hadn't noticed her.)

I said, "Yes, she was there seven years ago and is doing great."

She replied, "Well, I saw all the nurses around you and figured she had to have been a patient."

She said, "I was just up there with my 5-year old daughter and I told her, 'Look at that big girl over there. Some day you're going to get out of here and some day, you're going to have long hair again.'"

She added, "You gave my daughter hope. Thank you."

What a great feeling to revisit a special chapter from our history and leave some hope behind when we left. Doesn't get much better than that.

From there it was back to the other side of the hospital for Sarah to meet with the audiologist. She's been having some trouble with her hearing aids so they did another hearing test and re-calibrated her hearing aids. We'll see how that works.

She also did a urine test (testing for Neuroblastoma markers in her urine) which we will have the results for in about a week.

Finally, at 4:30 it was time to leave Duke behind one more time, and head home.

Friday, May 21, 2010

We're back from our two-day journey to and from Duke and have have lots stories and pictures to share. Unfortunately it may be a day or two before the share-ers have share-able time available to do the aforementioned sharing but have no fear; the sharing IS comin'! Soon!

Unfortunately, for those of you who love Sarah's writing, you're going to be stuck with me for a few days because Princess Groovy Chick just happens to be knee-deep, waist-deep and even neck-deep in end-of-the-year projects and assignments for school.

And since school is just a wee bit important, I figured I'd better encourage to do her writing there rather than here. Because (as far as I know) you all don't give her grades. :-)

So anyway, lots of great pictures and Duke stories coming soon.

____________________________

Tuesday, May 18, 2010

We have so enjoyed reading your comments, questions and memories in the guest book. Keep 'em coming!

I don't have a lot of time to write much because in about an hour Sarah and I are making the 4-hour trek to Durham where we'll stay at a hotel before getting up in the morning to keep a few Duke appointments.

At 9 am, she'll undergo three hours of neuropsych testing and then in the afternoon, she'll have another hearing test and meet with an audiologist to look at her hearing aids. She's not been wearing them much since they seem to really bother her. Not only is it the physical sensation of having them in her ears, but also being irritated by all these random sounds that seem too loud,d make her have headaches and keep her from being able to concentrate on anything.

She'll also do a urine test for Neuroblastoma while she's there. This is a test that is quick, easy and non-invasive but, in her case at least, a reliable window into what is going on in her body, Neuroblastoma-wise. (It measures NB markers in her body which show up in the urine.)

Since she's completely done with scans, it makes me feel better as a Mom to keep an eye on things with the urine test.

NB has an incredibly high relapse rate and I just want the peace of mind of knowing that everything is still going well for her.

So that's the news for now. I'll take plenty of pictures and I'm sure we'll have plenty of stories to tell.

Even though it's a medical trip, Sarah and I will just enjoy the mother/daughter aspect of the outing with time spent together in a hotel room and time in the car and hangin' out together in various settings around Durham.

We'll be back in touch soon . . .

___________________________

May 17, 2010

Today Sarah is an 8-year survivor of Neuroblastoma!

Woo-hoo and hallelujah!

_______________________________

May 16, 2010 (Take Two)

In celebration of tomorrow being Sarah's 8th year of surviving Neuroblastoma, here is the first in her series of memories.

Take it away, Sarah!

Well, here we are, gathered today.

On pain of death (of the website), I have been rather heartily encouraged to update in my mom�s place, as this is supposed to my site, not hers.

Ahem� anyway.

I�ve really enjoyed reading the guestbook, looking through all of the memories that have been shared and remembered. I can�t believe that you all remember some of those details, even when you weren�t there to witness the things that actually happened!

So for starters, for those who asked to hear of the first bike ride and of Snowy getting Mom and Dad up at night and Nathan taking care of my nose-tube feeding machine in middle of the night and other stories like that--I would fulfill those requests but the thing is, for whatever reason, I cannot seem to remember what my thoughts or feelings were at those times. I remember them happening, but not so much what was going on inside my mind. But this is just the beginning of my doing this, so maybe after giving these requests more thought, I might be able to delve into them in the near, or perhaps not so near future.

But more to the point, the memory I will be remembering today is the one of the �Elevator Episode,� or whatever my lovely mum has called it in the past. My lovely mum in question and I were headed through Duke hospital, meandering our way towards the parking lot to go home. We were not really hurried, I don�t think, but we were anxious to get home after a long day of hospital fun.

We came to a crowded room that we often passed through and on the curved walls were at least half a dozen well-used elevators. In all of the hustle and bustle, Mom managed to press the down button of the elevator farthest to the right and we waited, as is the norm.

But since it was so crowded, Mom and I somehow became separated as we transitioned from the elevator waiting room place to the elevator itself and, despite the room�s impenetrability, I got into an elevator alone � no strangers, no one.

Without Mom.

I tried scrambling about the operator board for the open button, but it was too late by the time I found it. I felt myself go downwards so using my great(?) brains, I quickly looked up at the number that flashed red above me to see what floor I had just left, and jabbed my finger on the corresponding button. Again, too late.

Apparently, someone on a lower floor had pushed a button for a higher up floor, thus hailing my particular elevator downwards and downwards alone. No going upwards again for me. I think at that point I had stumbled back to the elevator�s railing, catching my breath from the rush of adrenalin as I waited for whoever was going to join me on the pulley. I do not remember this particular character but I think I remember politely and inconspicuously glaring at them for their innocent and rightfully unintentionally wrong button-pushing.

When they finally got off at their destination, I leapt forward to the button pad once again, and pushed the button (I think it was the 12th or 13th floor) that would be my salvation. My heart still beating in franticness, I waited for the elevator to rise. Up and up it went, to the greatly desired floor of choice. I thought that if I stared at them long enough, the doors would open faster, and when they did, I remember my relief only too well as I fell into my mom�s arms, laughing and on the brink of tears to be with her again.

So there you have it � Memory #1. I hope you enjoyed it!

________________________________

May 16, 2010

Good news! Sarah is hard at work on her entry (commenting on your comments) and should have it finished and posted in the next day or two.

This Tuesday, she and I will head out for Durham. She has a neuropysch evaluation at 9 am Wednesday so we're traveling Tuesday and staying over night. (It's 4 hours, one way.)

She and I always manage to have fun together, regardless of the reason for our journey. And Nathan and Steve can have "guy time" while we're gone and eat "guy food" (whatever that is), and watch "guy movies"--loud movies with explosions. (Which Sarah and I hate.)

Sarah and I more into character development, great dialouge and subtle psychological nuances. If something explodes, it sort of ruins the movie for us. (Smile)

Anyway, that's the scoop. Time to get ready for church!

______________________

May 10, 2010

In one week (May 17) we will be celebrating the fact that Sarah is an
8-year survivor of a (largely) unsurvivable cancer.

I had the idea of asking you all to sign in over the next week and share a memory (or two or three) that especially stands out to you from the years that you've been reading Sarah's story.

When I told Sarah that idea she added to it and said, "I'll read through what everybody says, and if I see an entry that I remember especially well, I'll write a little paragraph or two about it from my viewpoint."

Because (as she went on to point out to me), people got the stories about her from my writing and she thought it would be fun to take the stories about her that you remember that were written by me and write about them herself--from her own viewpoint.

Sounds like fun, doesn't it? Plus, it'll give Sarah something to write about! (She doesn't mind writing--she just has a hard time coming up with a subject.)

So that's the plan for this week. Leave any stories or memories that stand out to you from the last eight years and when Sarah sees one that she remembers well, she'll write a little post about it.

Sounds like a plan!
_____________________________

May 9, 2010

Sarah Writes About The Holocaust. And Dresses Like the 60's.

Sarah has been having a bit of a hard time coming up with stuff to write (even though we promised you'd be hearing more from her) so for right now, she has asked me to include something she wrote for school about the Holocaust.

A couple of years ago, Sarah and I went together to see a play about Anne Frank and were both strongly impacted by her story and by the way she and the rest of the Jewish people were treated.

So here is a brief writing from Sarah on the Holocaust and the treatment of the Jewish people. (She'll be writing some regular Sarah Stuff later this week.)

THE HOLOCAUST

The Holocaust was a mass killing of the Jewish people by the Nazi's, led by Adolph Hitler. It took place mainly in Europe, during the 1930's and 1940's.

Hitler's intention was to make what he called a Perfect Race consisting of only blonde haired and blue eyed people. He seemed to consider these to be the only good group of people but ironically, he had dark hair and eyes himself.

About eleven million people innocent people died, just because of their outward appearance (something they could not change), and their religion (something they could have denied but bravely chose not to). Therefore, they suffered the consequences.

There have been pictures, biographies, autobiographies, and eye-witnesses who have shown us the horror of the Holocaust, first hand. To me, the Holocaust just proves that, yes, the world can be unfair. But people did survive it, so I think it also proves that the human race can be quite resilient when it has to.

___________________

Another school activity last week was a Sixties Day when everyone was asked to dress up from that era.

Here is Princess Groovy Chick's groovy look.

Peace . . .

. . . and love.

_______________________

Tuesday, May 4

A MOMENT STOLEN BY CANCER

Tonight, Steve and Sarah are over at the High School, getting info about ninth grade, meeting teachers, finding out what courses she'll need to take, etc.

It's Sarah's first time in her new high school (beyond a brief stop in the lobby) and guess who's not there?

Me.

Why am I not there?

Because of cancer. Because I've had a bad day physically and have spent most of it in bed, hurting more than usual.

And so my little girl has gone off for her first view of her new world without me. I think I've been there for just about every new step in her life so it's a little bit hard to sit at home while she and Steve are there together.

But to look at it another way?

As a result of having this cancer surgery, I am ensuring that I will be able to be with Sarah for hundreds of more new experiences down the road. I guess I can get over missing one experience if it means being there for the rest of them.

So that's my pep talk for tonight. And I sure needed to hear it.

_________________

Sunday, May 2

I mentioned over on Smithellanous that before my recent surgery, Steve and I spent a few days at a lovely home on the ocean.

The last day of our visit, we decided to surprise Sarah at school and take her out to the house with us. Here are a few photos from that special time.

______________________

Wednesday, April 30

On behalf of Sarah and me, we apologize that this site has not been kept up a little better. There's a lot going on!

But updates are on the way--soon!

Thanks so much for your patience.

____________________

Wednesday, April 21, 2010

Have no fear; Sarah really is going to be writing a post soon.

But in the meantime, I have a couple recent photos to share.

Steve and I left our vacation momentarily on Tuesday morning to drive back to see Sarah honored for being on the A/B Honor Roll for the past nine weeks. Hurray!

Lined up with the other kids.

After all the Honor Awards were given out, they had something called a Manteo Middle Award, given to about four students out of a hundred. It was decided on by the teachers and given to students who were on time, who displayed a good attitude and who embodied the Manteo Middle School slogan, "Failure is not an option."

To our delight, Sarah was one of the students selected for that award!

And may I just point out that I was on the only parent in the entire gym who had a camera. You can tell I'm a bit of
a "newbie" as a Public School Awards Ceremony Mama.

Before we headed back to vacation and Sarah headed back to class, we got a quick picture together. We are very proud of our gal!

Friday, April 9

Tuesday, April 13

A THREAT

Well, I have had to threaten Miss Princess Groovy Chick. Yes, it has come to that. Threats. Dire and awful threats. Terrible and horrific threats. Threatening, threat-filled threats!

And what do these threats consist of? Well, since you asked, I'll tell you.

I told Sarah that this website has HER name on it. It has HER picture at the top. It is HER story. And SHE is a writer! A lover of words! And the readers who come here love to read what she says! Even more than they love to read what I say! (sniff)

Does this look like a girl who loves to write, or what?

And this is where the threatening came in. I told her that from now on, she has to write at least two entries a month or I would discontinue the site. I would Shut. It. Down. Vamoose! No More! Done! Finis!

And I'm here to tell you that threatening works because she has agreed! (smile)

Actually, we all know how much she enjoys writing and would love to do it here; she just needed a little "friendly persuasion." (I sound like a member of the Mafia.)

So I don't know when her first entry will appear, but it will be soon! Is that good news, or what?

Here is another picture of my lovely, talented authoress.

Over at Smithellanoues, Trine signed in and asked if I would re-post the story of Sarah wearing her old cancer hat. Trine, I looked through a bunch of old posts, but couldn't locate that particular story. I remember writing it but just can't put my hands on it. Sorry!

And lastly, Jill asked for the Oreo recipe that Sarah made when Nathan was home so I'll include that here:

1 pkg Oreos
1 stick butter, melted
8 oz cream cheese (lite is fine)
2 small pkgs. instant vanilla pudding (we use sugar free)
3 1/2 C milk
1 12 oz container Cool Whiop

1. Crush cookies in Ziplock bag, reserving a cup of crumbs for topping.

2. Press firmly into a 9x13 pan with the melted butter mixed in.

3. Mix cream cheese, pudding and milk with mixer. Pour over crust. Chill for at least 30 minutes.

4. Spread cool whip over the top and sprinkle with the reserved cookie crumbs.

5. Garnish as desired. (Sarah added a few jelly beans.)

____________________________

A Confession.

Sarah and I have a terrible, terrible confession to make. This confession might cause you stop coming to this website forever. It might make you want to retract every single kind word you've ever said about our family. It may even cause you to drop your jaw in shock and horror, as the scope of our misbehavior sinks into your very soul.

(Allow me to gather my strength for just a moment before I continue.)

Okay. Here is a picture that will give you some insight into this terrible misdeed that we are so ashamed of. (The only reason Sarah appears to be smiling is because she is trying desperately to hide her guilt.)

Does anyone have any insight into our crime? No?

Okay. Another picture. (This is such a difficult confession to make.)

And another . . .

And yet another . . .

And here is Princess Groovy Chick, approaching the only place where we can make restitution for our grave oversight, our egregious act of horrible horrificness.

And lastly, the picture that makes it all okay.

Has anyone guessed the crime?

Well, I guess we'll just have to confess.

Here. It. Is.

Sarah and I have lived in Manteo for 4 1/2 months, but only last week did we finally go to the library to get our own cards. (Which is what Sarah is doing in the picture.)

Gasp! Shudder! Gasp again!

We know that we shouldn't even be allowed to hang out with any other book lovers for as long as we live. But we're hoping that we will eventually be forgiven and welcomed back into the fold.

Whew. I'm glad THAT'S over!

___________________________

Monday, April 5

Over on Smithellaneous I posted a picture of Nathan and I, in all our Easter finery.

Well, here is a photo of Sarah in her Easter Not-So-Finery!

The reason she was dressed like that was because she was part of a dramatic performance for the morning service; all the participants were dressed in matching t-shirts.

She was still quite fetching, though!

And just to show you that the apple doesn't fall far from the tree, here is proof that Sarah takes after me in the "Loving To Garnish Things" category.

While Nathan was home, she made her famous Oreo dessert for our Saturday evening meal and decorated it in fine fashion.

And lastly, the other day she said to me, "Look, Mom! I'm 'burping' Snowy."

And here are the pictures to prove it. A doting mistress. A patient doggie.
How can you not smile!

Sarah is going with Steve and me to the doctor tomorrow since she's out of school for the week and we'll be gone for most of the day.

It'll actually be rather wonderful to hit the road for a doctor's appointment and not have the "guest of honor" be Sarah. She's earned the right to sit out in the waiting room and read a book rather than be called back to the doctor's office for serious conversations.

Hurray for you, Sarah! You've earned your break.

___________________

Wednesday, March 31

Is my little girl getting all grown up, or what?

She has been so sweet over the past few days, checking in on me by phone when I've been gone awhile, offering to help start supper when I'm delayed at the doctor, giving more hugs than are absolutely necessary. (smile)

I am blessed to get to live with someone who has already walked the cancer path and will hold my hand (just like I held hers) as we walk this new path together.

________________________

Sunday, March 28

Over at Smithellanous I just posted some news about
my breast biopsy results. Be sure to stop over there if you haven't yet.

But this site is about Sarah. A certain Sarah Smith. A certain lovely lady who makes me feel like smiling every time I see her.

She stays positive, cheerful and funny most of the time and has many more good days than bad.

However, not every day can be a good day. And she had a day at school this week that brought her to the van afterwards in tears.

She was so sweet about it. As soon as she got in she said, "Did anything bad (meaning my biopsy results) happen today?" She was ready to put her own tears on the shelf in order to enter into any sad news I might have.

When I told her everything was okay on my end she said, "Well, I had a bad day and I just need to cry."

As soon as we got back to the house, we took up our assigned posts on the couch where we always sit if something needs to be talked through or cried through after school.

When we finally got up from our session, I took a picture of her socks and shoes (which she had taken off so she'd be "comfy while she cried") and the all-important box of Kleenex.

And as for the bad day? It wasn't really a horribly awful day--just a day with a lot of little things gone wrong. In Math, they were studying for End of Grade testing and she understood very little of what was being taught; she only got two or three right on a practice sheet.

And then some boys were fighting in the hallway and some teachers had to intervene. Sarah is extra sensitive to conflict, loud noise, shouting, etc. and it really distresses her.

Several other things happened which I won't even write about but it was all just enough to push her over the edge.

But happily tears, mama hugs, comfy, shoe-less feet, Kleenex and a snack all conspired together to transform my gloomy lass back into her usual cheery self.

A before picture of her mood:

An after picture.

This particular post doesn't really have a big point except to say that bad days come and go but life goes on and happiness always reappears.

A good reminder for us all.
_________________________

Tuesday, March 23

ANOTHER ENTRY FROM THE ARCHIVES

February 9, 2003 (Written just a few days after being discharged from the transplant unit at Duke.)

Sarah and I just got in from her clinic appointment which lasted "only" two hours. (That's pretty short for us!)

It�s about 40 degrees out and since she was pretty �shivery� when we got into the apartment, I got two big bath towels and her blankie and put them in our dryer for about five minutes. You should have seen her smile when I carried the towels to the couch and gently wrapped them around her.

To see Sarah smile is to see the sun come out because her smile contains such a pure, sweet joy�-a joy that has been tried in the furnace and shines all the brighter because of the fire.

Yesterday, she was extra excited because Steve and Nathan were coming to spend the night. (We've had to live in separate locations during this post transplant season since Sarah has to stay ten minutes from the hospital.)

Sarah must have called Steve at least three times to see if they had left yet; when they finally walked in the door (with Steve carrying a big Valentine balloon), she looked as if she had just been given a million dollars. All night long, she beamed brightly and chattered animatedly, thoroughly enjoying the company of her two fellas.

She is such a social creature, not only by temperament but also because of our extensive travels and her attendance at hundreds of new Sunday School classes and Children�s Church services all over the country. I feel bad for her sometimes, because she�s stuck with just me day after day when I know she�d love to be out, visiting, talking, playing, laughing, and being a �regular kid.�

Today, as I sat with her in the waiting room at the clinic I thought, �What I wouldn�t give for this to be a regular Saturday for her, a simple Saturday free of blood draws, IV infusions, cold stethoscopes and serious discussions. She faces it all with a quiet grace and courage, very rarely complaining. She�s a challenge to me and my sometimes whiney ways!

Anyway, back to Steve and Nathan�s visit. After eating dinner (we had the stuffed shells that my sister, Debbie, had frozen for us last week), we played a little word game that we all enjoy. Then we popped some corn and put in �The Lady and The Tramp,� a video Sarah had asked Steve to rent for the night.

Sarah wanted most of the lights turned out so that it would be, in her words, �cozy.� Steve sat in the easy chair while I was on the couch between Sarah and Nathan. (I sat near Sarah because I was infusing medicines and wanted to keep an eye on her infusion pumps and lines.)

It was such a peaceful experience to snuggle with my family, to laugh with them over silly moments in the video, to get teary-eyed together at the sad parts, to pass the popcorn, to share a smile, to simply be a family again.

Because of our unique lifestyle of traveling and concerts, the kids have been with each other, and with Steve and me, twenty-four hours a day, seven days a week since the moment they were born. These separations are even harder in light of the many months and years of closeness that we�ve shared. (Of course, living full time in 475 square feet of space has made us �close� in more ways than one!)

After we finished watching the video Steve took Sarah into her bedroom, along with the black bag that carries her I.V. food and her two infusion pumps. As he was tucking her in, I finished cleaning up in the kitchen�Nathan had already done some of it before the video started. I was wiping the counter when Nathan walked in and without much preamble quietly asked, �Mom, is there still a chance that Sarah might die?�

He�s a big guy but I still want to be careful about how much information I give him. He deserves to know the truth but he doesn�t need to know everything that Steve and I know. I told him that the doctors say she is doing great, the transplant worked, her blood levels are great, she�s sailing through the whole process. I also thought that he was old enough to know that there is a better than 50-50 chance that she could relapse in the next few years.

I could see him trying to absorb it
all--the joy of the evening together, the thankfulness for her current condition, the fear of what may come, and the love and protectiveness he feels for her. I reached up (way up!) and gave him a big hug--I had been hugging him frequently all night because, as I kept telling him, I had to make up for lost time! Then he and Steve and I sat in the living room for awhile, cherishing this chapter when things are going well, and savoring the experience of simply being together.

The day after they left, I was driving Sarah to her clinic appointment when she suddenly said, �Mom, have you ever thought of something? Have you ever wondered what happens to Snowy�s poop after he goes to the bathroom?� (Actually, she said �turds� but you didn�t hear that from me!)

Well, truthfully, I hadn�t given it a great deal of thought but you know how we moms are; we start talking and hope that eventually our brains will catch up with our mouths. I gave her a rather anemic explanation of poop being absorbed into the ground and making the soil richer and that farmers actually use it to fertilize the places where they grow things.

She was thoughtful for a long moment and then she said, �How can something as dirty and germy as poop be used to grow good stuff?�

Well, I know when I�m beaten. I told her to ask one of her grandparents who grew up on a farm and they would tell her all about it. She regarded me suspiciously in the rear-view mirror like, �But I thought Moms knew everything!�

I can�t believe I�ve been able to fool her for this long!

A day or two after that deep conversation she asked me, �How were Adam and Eve able to name the polar bears if the bears had to be in the North Pole since it was too hot for them in the Garden of Eden?�

Once again I had to say, �I don�t know. (There needs to be a reference book of impossible questions for parents.)

Her inquisitive mind continues its work when we go in for her check-ups; in fact I always feel like I�m kind of a meaningless accessory to the whole process as Sarah sits herself down in the chair nearest the doctor (leaving me sitting in the one further back) and enthusiastically launches into conversation.

Last Friday she asked the doctor, �Will I have scans and x-rays before radiation starts? Because if I do and they don�t show any more cancer, then why do I need radiation?�

She had several other medical considerations to bring up and then she said airily, �By the way, do you know anything about cats?�

Well, the doctor was still back in the land of scans and radiations so it took him a minute to fast-forward his thought process. Sarah went on to say, �I�m just asking because my friend has a cat whose eye stays half closed and I wondered if you might know what�s wrong with him.�

Well, I can�t blame the doctor for not giving her advice; his expertise in cats is obviously limited only to CAT scans! (Sorry, couldn�t resist.)

_____________________

Thursday, March 18

NORMAL

When I picked up Sarah from school Monday I asked her the usual question, "How was your day?"

And I heard the sweetest words ever. "Mom, I think that was the best day I've had so far."

You just don't know how relieved, thankful, and happy Steve and I are to see her not just "getting by" in school but actually thriving. Academically, socially--the whole bit.

And what made her extra, extra happy on Monday was this.

If you'll remember, last week she dressed up as a farmer for extra credit on a certain project; she also created a diorama for the same project. (She was really only required to do one of those two things, in addition to writing a research report.)

She was so proud of herself when she got her grade back that she could have lit up Manteo all by herself!

Even though I don't love all the doctor's visits I've had lately, I've been so happy that it's been me, not her having to go. We dropped her off at school Tuesday morning on our way to the surgeon's office and as I watched her walk through the crowd of kids and disappear into the building, I thought of all the normal "kid experiences" cancer had taken from her during her years of treatment.

And I was so very happy that she wasn't the one on the way to a surgeon somewhere--she was right where she needed to be.

Going to school. Being liked by a boy. Doing a history project. Talking in the hallways. Giggling in the lunch room. Being beautifully, wonderfully, miraculously . . . normal.

_________________________

Monday, March 15

Today is a Memory Lane Day. As I've mentioned in the past, part of my purpose in keeping this website going, even now that Sarah is done with treatment, is to occasionally post stories from the past in order to help families who are still walking the cancer journey.

Here's one from January 18, 2003, when she was in the middle of her bone marrow transplant stay at Duke.

THE BEST BACK RUB

Steve and Nathan stayed with Sarah last night so that I could get some uninterrupted sleep at a hotel. When I walked back into Sarah's room this morning, I took one look at her face and knew she was in pain; her face was pale and pinched and she was breathing in a kind of half-grunt, half-moan way which she always does when she's hurting.

Steve and Nathan went down to the cafeteria to get some breakfast and I slipped my shoes off and lay on my side on the bed beside Sarah. I enfolded her in my arms and began to rub her face and her soft, sweet bald head. It was an amazing transformation--in about 60 seconds her breathing changed from painful, unsteady groaning to a quiet and peaceful rhythm.

There is so little I can do for her in this horrible time of her life; it really felt wonderful to be able to offer that small amount of comfort and know that it made a difference

Two nights ago, I got up with her about 5:00 am when she was hurting real bad. I tried to encourage her by saying, "Sarah, right now you're in the middle of the worst time of your treatment but very soon, things will begin to get better."

She looked at me with pain-filled eyes and said, "Mommy, I think that right now I'm in the middle of the worst time of my whole life."

It hurt me so much to hear those words and I so wanted to comfort her. The only thing I could think to do was to have her roll on her side so that could rub her back. I had just been telling her the day before how much I always liked it when my mom rubbed my back when I was little.

I had been rubbing for just a minute or two when all of a sudden her eyes flew open as if she had just remembered something important. The next thing I knew, she had sat straight up in bed, reached her frail, feverish little arm toward me and began to rub MY back! I was dumbfounded that she was able to put aside her own pain to do that for me.

I started crying and leaned forward to kiss her saying, "Thank you so much, Sarah, for doing that for me. That made my heart smile!"

She looked very pleased with herself and soon drifted off to sleep with a small, peaceful smile on her face.

Believe me, it was the best back rub I've ever had.

_____________________

Thursday, March 11

I took Sarah to the doctor yesterday for an annual physical. (It was her first visit ever with a doctor who wasn't an oncologist and wasn't a pediatrician-- just a regular ol' family doctor.)

In addition to doing the physical, the doctor also discovered that Sarah had a severe double ear infection AND a yeast infection!

I never would have guessed at the ear infection since she hasn't run a fever at all and her ears haven't bothered her. (Except for some popping.)

So anyway, she's on two antibiotics right now, along with Ibuprofin for the discomfort/swelling in her throat. She's missed two days of school so far but hopefully will be back tomorrow, even though her voice is still a bit raspy.

And may I just say that I absolutely LOVE writing about ear infections instead of chemo regimens. What a wonderful, wonderful joy!

__________________________

Tuesday, March 9, 2010 5:22 AM CST

Yesterday, on my birthday, Steve and Sarah conspired together and made--and delivered--my breakfast to me.

After helping prepare breakfast, it was time for school. Sarah suddenly decided she was sick and tired of being a stylish, lovely school girl and that she wanted to start dressing like a farmer. So she did.

(Actually, she was dressing up for a certain class project but I did think she made a very stylish farmer.)

Here are a few more pictures that I took later on in the day---she traded in the farmer hat for a beret and bingo, we had a Parisian model on our hands!

The many moods and faces of girl who is lovely inside and out.

Today "our girl" is a little on the quiet side since she has completely lost her voice and is barely even able to whisper. It's always a tough thing when a woman can't talk! (And all the ladies said, "Amen!")

Thursday, March 4

Note to Emma:

Your guestbook entry yesterday really touched my heart. I want you to know how much I admire you and am inspired by you and your story.

Your little girl is incredibly blessed to have you for a mommy. Give her a hug from Sarah and me, and give yourself a hug as well. May your upcoming marriage be full of years that are happy and blessed.

--Becky

_____________________________

Wednesday, March 3

I just called our new local doctor's office to schedule Sarah for a routine annual physical. (And I'm sure you know that ANY cancer parent loves the word, "routine" when it is applied to a doctor's visit.)

As I was going through the process of getting the details of the appointment arranged, the secretary said, "How old is your daughter?"

I said, "Fourteen."

Her next question was, "Is she sexually active?"

If it hadn't been so inappropriate to do so, I would have laughed out loud. What I wanted to say was, "Look lady, she's incredibly shy about even answering the phone when a boy calls! And she's just BARELY past the stage where she thinks all boys are yucky!"

And I yet I understand the unfortunate reasons why that question has to be asked--it's because there are a number of fourteen year old girls who ARE sexually active.

And that makes me sad. Fourteen-year old girls are way closer to childhood than they are to adulthood. And they are just not ready for that kind of involvement, on so many levels.

Sarah has very definite opinions about the fact that she is going to follow her big brother's example of saving his virginity until after marriage. I know we're a bit old fashioned in that regard and I don't say any of this to criticize anyone who doesn't believe that way. However, it's just the way we've decided to teach our kids.

Anyway, the reason I'm even writing this is just to be able to say how grateful I was that I was able to say "no" to the question I was asked.

I'm glad our little girl is still a little girl.

And even though it seems as though half of the boys in school are in love with her, she has repeated firmly to them time and time again, "I am not interested in dating ANYONE right now."

For a million and one reasons, her dad and I are so proud of her.

__________________________

Monday, March 1

Sarah got her midterm report card on Friday. She was a bit apprehensive about how she would do on it because everything is so new to her at school (classes, homework, teachers) and because of the learning issues she has dealt with.

So she got in the car on Friday afternoon and made her first announcement, "I got a 'B' in Math."

A 'B' in math? I was awestruck! That's terrific, considering that math has been her biggest challenge.

Then I waited for the other shoe to drop. I waited for the, "That was the good news; here's the bad news" announcement.

However, there was no bad news. The rest of her Friday afternoon announcement was, "I got an 'A' in everything else."

I wish you could have seen her smile when she told me that. And I wish you could have seen ME smile when I saw HER smile. We were the Smilin' Sisters, no doubt about it. (Snowy was, of course, clueless.)

And in other school news (in case you missed the announcement on Smithellaneous), yes The Boy did call. But Sarah was too nervous to answer. (smile)

And in closing, here are a couple pictures that prove the unfairness of life. Why is it that fourteen-year olds can look this good three minutes after getting out of bed when it takes 47-year olds(not mentioning any names here) several hours to accomplish any semblance of beauty? (Don't answer that.)

Sitting there in a patch of sun on a Saturday morning, she looked so lovely that I had to snap a photo. (or two.)

___________________________

Wednesday, February 24

Alrighty then. For all of you who are curious as to whether or not The Boy has called Sarah yet, he has not.

However, she was informed by yet another boy that yet another boy likes her! Snowy is going to have his work cut out for him--fending off all of Sarah's admirers! (Click here for information on his Sarah Duties.

I was reading through some of Sarah's old journal entries recently and found one where a certain line jumped out at me. It said, "Sarah has been going to public school for just about a month now."

Those words were written in early 2004 when we felt that she was strong enough--following her transplant--to go to a "real" school for the second half of second grade. (I had home schooled her up to that point.)

Since she is, once again, one month into "real school," I thought it would be fun to post the old entry and see the comparisons between where she was then and how far she's come.

This is what Sarah looked like around the time this post was written.

Early 2004

DUKE HOSPITAL, POWDER ROOM PONDERINGS, SNOKING ANTS

Sarah, Steve and I are in a hotel room across the street from Duke Hospital, eagerly awaiting the Pizza Hut delivery person. Since Sarah has only had a few saltine crackers and half a sandwich over the last twenty-four hours (due to having to fast for her bone marrow biopsy), she is practically salivating at the thought of hot, succulent, delectable, aromatic, cheesy pizza!

When she woke up from her anesthesia earlier today and finally became coherent enough to talk, one of the first things she said was, �I�m so hungry I could even eat GREEN BEANS!� Sarah�s steadfast loathing of green beans is legendary.

Now if it were me who had eaten so little in 24-hours, you would be witnessing some non-attractive incidents of extreme crankiness and excessive crabbiness! However, despite so little food--and despite the fact that she got up at 4:00 this morning--Princess Groovy Chick has not had one crabby moment; in fact, she has been smiling nonstop since our arrival at the hospital at 9:00 a.m.

Sarah�s sweet smile has survived through the following fun activities:

1. Getting her port accessed (involves having a needle put through the skin on her chest to get to the port-a-cath underneath)

2. Having blood drawn

3. Being hooked up to IV fluids

4. Being examined by a physical therapist

5. Going under anesthesia for the biopsy

6. Waking up�woozy, hungry, thirsty, and in pain--in a recovery room

7. Having a pulmonary function test

8. Having an echocardiogram

9. Being injected with a radioactive isotope for her scan tomorrow

10. Doing a urine sample

11. Being de-accessed (pulling out the aforementioned needle)

12. Having a chest x-ray.

And she is STILL smiling and still bouncing off the walls. Ah, the energy of youth!

Now I realize that you�re probably wishing that I would stop blathering on about the energy of youth and get on to reporting her test results! As much I would love to do that, we unfortunately have no results yet to report.

We�re hoping to have preliminary biopsy results sometime tomorrow; in addition, the results of the MIBG scan should be available for our doctor to read soon after the scan is finished tomorrow morning. At some point after that, we will sit down with him and get his opinion on where we�re at and where we�re headed. It�s an understandably nerve wracking time, especially concerning tomorrow�s MIBG scan because, in the past, that scan has always shown �something.�

Whatever that �something� is has not changed, moved, grown, or shrunk over the past eighteen months so it�s been kind of baffling, especially since the doctors at Sloan Kettering say for sure that it�s Neuroblastoma and the other doctors say it is not.

Tonight Sarah asked me yet again, �Mom, do you think that I am free of cancer?�

How many times have I heard her hopeful little voice ask that question? Way too many. And way too many times I have had to grope for an answer that balances not promising too much hope with an answer that doesn�t take away too much hope. Even though I am a long time, inveterate, diehard, word lover, I still struggle with getting an answer phrased in a way that satisfies my �mommy soul� as well as her �inquiring mind.�

Well, it�s now about an hour later---the pizza has been delivered and devoured and Steve and Sarah are sprawled on the bed watching TV. I am continuing to write this update from behind the only closed door this hotel room provides�the bathroom! Yup, you heard me right�the bathroom is the grand result of my quest for a quiet place in which to concentrate. Bet you�ve never had the privilege of reading anyone�s Powder Room Ponderings before, have you?

Sarah has dragged a lot of homework/make-up work along with us to Duke, which we�ve been trying to work on in spare moments so she won�t be so behind when she gets back to school.

However, her teacher, Mrs. Short, called us at home the night before we left and said, �Now, I want you to know that the last thing on my mind and the last thing that should be on Sarah�s mind is getting her schoolwork done; I know she�s going to have a lot going on in the next couple of days. We love having Sarah in our class so much and we�re going to be praying for her while she�s gone.�

That really warmed my heart, to hear the compassion and thoughtfulness of Sarah�s teacher AND to be �let off the hook� concerning trying to finish all that work with everything else that we have going on right now.

Sarah is still loving school (she just finished her first month!) but continues to struggle with P.E. The other night when I was tucking her in, I lingered a little longer than usual because I noticed that her little face had �clouded over.� She finally said, �I need to drop my box of rocks, Mom.� (Sarah once told me that if you carry something around that�s really bothering you and you finally tell someone about it, the relief of telling it is like �dropping a box of rocks.�)

She continued, �In P.E. this week, the teacher was saying something and when he got done, he looked at me and asked me if I had heard him okay. I said I did but I really didn�t; I didn�t want to get into a conversation with him about it. I thought if I told him I didn�t hear him and he said it again that I still might not be able to hear him and I would feel sort of dumb.�

There was a long silence in the bedroom and then her tears started to fall. She added, �And now I feel so bad because I lied to my P.E. teacher about telling him I could hear him when I couldn�t.�

Of course I hugged her and reassured her that her daddy or I would go to the school and talk to him and see if we could find a way to make things go better for her in that area. She was so serious about her �offense� of lying and so distressed that she had done that. I thought to myself, �Well, if that�s the worst thing she ever does, she�s going to turn out pretty good!�

It made me think back to a couple of weeks ago when she was filling out a little children�s prayer journal someone had given her and there was an area for confessing sins. On that page she had written, �I bit my brother when I was three years old.�

I had to smile because I could just see her sitting on the bed, trying her hardest to come up with a real �sin� and finally deciding that biting one�s brother was pretty heinous. There was also a place in the book for prayer requests and one of the things she had written was, �For my friend�s ant to stop snoking.� (Obviously she meant for her aunt to stop smoking but I still got a pretty good chuckle out of a �snoking ant.�)

So many things from Sarah�s perspective are unique. When she and I were watching a few minutes of the Super Bowl, she stared seriously at the TV for about five minutes and then finally asked in a puzzled tone, �Mom, why are those men all wearing pretend muscles?�

I had no idea what she was talking about until she pointed out the padding that the guys were wearing.

Hmmmm. I bet those football players always thought that the muscle they had were real but no�they are actually pretend!

Well, I have just now decided that my �Powder Room Ponderings� are going to have to come to an end. My eyes will barely stay open and my mind is quickly entering non-functional mode.

Thanks, as always, for visiting Sarah's Spot and joining us on this journey.

__________________________

Tuesday, February 23

I recorded Snowy a couple different days when I got ready to pick up Sarah from school.

You will see in the video that all I have to do is mention "Sarah" or "school" and Snowy turns into a hyperactive furry mass of unbridled enthusiasm. Please excuse my high pitched, "talking to the doggie" voice; that's not how I usually sound. (I hope!)

Snowy's School Run

_______________________

Saturday, February 20

For those of you who asked what Sarah did when the boy asked for her number?

She stuttered and sputtered for a moment, and then she gave it to him.

She said she was a little bit concerned that she wasn't supposed to give it to him but I told her that giving a boy a phone number was a pretty normal thing for an 8th grade girl to do.

Now if he actually decides to try and call? Hmmm. . . Steve and I may just have to go out and disable some cell phone towers.

______________________

Friday, February 19

The inevitable has happened.

The time has come.

We knew it wouldn't take long.

A boy at school.

Asked Sarah.

For her phone number.

ACCCKK!

Wasn't it just last week she was seven years old?

And why would a boy even be interested in Sarah anyway?

I mean, really?

Does he think she's pretty, or something?

What could a boy possibly find to like about this young lady?

Harrumph. I will NEVER understand men.

______________________

Wednesday, February 17

O.T.

I know that many of you have been following Sarah's story for a lot of years, but here's something a little something about her that I bet you never knew:

When Sarah writes with a pencil, she demonstrates a "right hand dominant tripod grasp with the pencil slanted forward."

Did you KNOW that? Me neither.

As it turns out, Sarah had some occupational therapy testing done last week as the school followed up on a recommendation Duke made after doing her last neuropsych exam. Duke noted that Sarah had a little difficulty writing smoothly and quickly, and that at some point, she might benefit from Occupational Therapy.

Sarah's guidance counselor emailed me a couple days ago and said that the school's occupational therapist had tested Sarah last week but when I asked Sarah about it, she said she hadn't been tested at all!

I was just a bit puzzled by that until Sarah brought the printed report home last night; as it turns out, the testing consisted of her being observed for several days, in the hallways and classrooms. Also, a few of her teachers were interviewed.

Here are a few more scintillating tidbits that came to light about Princess Groovy Chick.

1. Sarah is able to carry three large books with both hands.

2. She is able to operate the combination lock on her locker.

3. She is able to squat down/stand up to remove the books from her the bottom shelf.

4. She exhibits adequate hand/finger dexterity and muscle strength.

The report said that her language arts/drama teacher said that Sarah's handwriting is extremely neat and legible, which makes me wonder if she is a true Smith after all! (Since Nathan, Steve and I all have horrible penmanship.) The teacher also reported that Sarah seems to be adjusting well socially and her endurance is improving.

Sarah's social studies teacher said she is adjusting well to her new school environment and participates in class.

So there you have it! The long and the short of a testing regimen that we didn't even know existed!

The bottom line is that I am very grateful that Sarah got such a good report; many pediatric cancer survivors have long term challenges in these areas and have to work very hard at overcoming them.

The main challenge that Sarah has right now is her lack of strength and endurance; for instance, yesterday, her class had to walk around the soccer field several times and Sarah came out to the car completely wiped out. She never has been a really robust or strong child and after all of the cancer treatment, she struggled even more with stamina, strength and endurance.

Gym class will be very good for her in that regard, as long she remembers that she has to take it slow and work up to the level the other kids are at. Her gym teacher is aware of her medical background and her limitations and is very willing to make some adaptations for Sarah.

Thankfully, her gym experiences so far have been positive and even--dare I say it?--fun! So that's good!

And so just to let you know the summation of the report, "Sarah appears to be able to functionally participate in her classroom tasks and doesn't require educationally relevant occupational therapy intervention at this time."

In "regular speak" that means, "Sarah's doin' good!"

Hallelujah!

________________________

Sunday, February 14
Can you believe Sarah is already starting her fourth week of school? Here's a picture of her leaving school last Friday.

Confident. Happy. Beautiful. Sarah.

_________________________

Friday, February 12

I just realized I'd gotten a bit behind on answering questions from the guest book so I'll take a minute to do that now.

Ready? Ready.

Beth Reilly said, "Haven't heard much about Nathan lately. How is he doing at school?"

Beth, I sorta, kinda stopped writing about Nathan over here since I started up the family website. If you want to go on over there, you can type Nathan's name in the search window in the top left corner and any posts about him will pop up.

But to briefly answer your question, he is doing very well; we'll see him (and Meagan) at Spring Break in about three weeks. Hurray!

__________________________

Mary H. asked, "Sarah, what will you wear for the upcoming dance?"

Actually Mary, Sarah has opted out of going to the dance at all. At this season of her life, it's not something that really appeals to her. But it WOULD have been fun to discuss clothes and hair, wouldn't it? (smile)

__________________________

NK asked, "Why does Sarah keep crying when everyone is so nice to her? Is the work too much or is she just used to being homeschooled? She sounds very intelligent from her writings so I wouldn't think she'd have much of a problem keeping up. I want to pray for her but just don't understand what the problem is. I was tortured every day in middle school and didn't cry."

NK, thanks for your question. And let me just start by saying I'm sorry to hear that your middle school years were so difficult. One of the things that makes me the most upset in life is when kids are treated badly--by parents, by people in authority, or by other kids. It just should NOT happen and I hate that it happened to you.

I guess to answer your question, those particular tears in math class were due to the fact that there was a hard math concept that had been explained the week before that Sarah was very excited about because she felt like she really understood it. (As I've written before, Sarah has some ongoing struggles in math, so understanding something hard is really exciting!)

However, in the follow up class, the concept was explained again (with a little twist) and she realized she didn't "get it" after all. It probably wouldn't have been quite as big a deal if she wasn't already feeling lousy, physically. (In fact, she felt so bad that she ended up coming home early that day and going straight to bed.)

_________________________

And back to regular school news--tomorrow (Saturday) is scheduled as a make up day for the day missed earlier this week; however, I just saw the weather and it's supposed to snow all night. We'll see what that does to the make up schedule.

Today is sort of a big day for Sarah because, although it's the end of her third week of school, it's only her second day of gym class (for various reasons) and the first time to meet her "real" gym teacher. (She had been absent when Sarah was in class earlier.)

Since Sarah's least favorite class in the entire world is gym (she's just like her mama!) she's been a bit anxious about meeting the new teacher and getting established in that class. It'll be interesting to hear how it goes!

Sarah and I would like to thank you all again for the messages you've left in the guest book over the past three weeks. I just went through them all again this morning to re-read them and was so touched by your words of support, encouragement and great advice.

THANK YOU to our extended Caringbridge family!

___________________________

Thursday, February 11

Poor, poor Sarah. We got up this morning to find a message on our voice mail saying "School has been cancelled!"

She's struggling mightily to get over her keen disappointment concerning that bit of news. (smile)

The reason for the cancellation is that we've had high winds and flooding in the area for the past couple of days and a few roads are impassable.

Yesterday, there were wind gusts up to 50 and 60 mph, which was quite interesting for us newbies to the area, in light of the fact that there wasn't even an official "big storm" around.

Let me just say that when winds are that strong, hairspray will do you absolutely no good.

Trust me on that.

________________________

Wednesday, February 10

TEARS FOR ERIK

One of the few remaining young adult survivors of Neuroblastoma that we are aware of passed away last night. As I type these words through many tears, I am thankful for Erik's life; thankful that even though he was diagnosed at age 6 (just like Sarah) he got the chance to live into his twenties.

Here is a brief history of a brave, funny, articulate Neuroblatoma warrior. (Hmmm. Sound anything like a certain Princess Groovy Chick we know?)

BACKGROUND STORY

December 1991
Erik was diagnosed with stage 4 high-risk Neuroblastoma at 6 years old

He was in remission and very healthy for 13 years

May 12, 2005
Erik was diagnosed with recurrent neuroblastoma at 20-years old in bones and marrow

He was in remission for one year

Nov 10, 2006
Erik relapsed again at 21-years old in bones and marrow

February 9, 2010
After a variety of aggressive treatment, Erik passed away.

I am shedding tears on many levels-- tears for his family, his friends, and for all the warriors left behind who are still fighting.

We don't know what Sarah's future holds and we don't know what the futures of any of us hold; however, what we CAN be absolutely sure of is that Erik is totally and completely cancer free and happy!

You can find his page at www.caringbridge.org/visit/erikludwinski

Erik's mom and I have kept in touch through the years and her writing, faith, sense of humor, and immense love for her son (so near to my own's son age) has been a true inspiration.

Donna, our hearts are with you as you and your family say goodbye to this amazing young man whom you were blessed to be able to call your son. Thank you for sharing him with us.

_________________

Tuesday, February 9

Just a quick update to let you know that Sarah did go back to school today; however, she went in a little late (after first period) and then called me to be picked up a little early.

I had told her if she couldn't make it through the whole day, I'd rather have her come home and rest a bit and then go back for math tutoring at 3 pm, rather than go through the whole day and be too wiped out for tutoring.

So that's what we did; she had about 45 minutes at home to get a snack and rest and then made it back in time for the extra math help. Thankfully, we live just half a mile from the school, so that helps.

She basically just has a bad cold; no fever, thankfully, but lots of fatigue and plugged up-ness.

She had a few tears again in school today when she got overwhelmed in math but the teachers here have been amazingly patient with her and she was able to get a handle on her emotions and continue on with the day.

So that's the brief report on her--she's still not feeling great but is soldiering on through each day.

Have I ever said how proud of her I am?

Well, I'll say it again. I'm proud of my Princess Groovy Chick!

__________________________

Monday, February 8

A COMPLETED MEDICAL HISTORY

At 7:45 this morning, I delivered Sarah safe and sound to Manteo Middle.

At 9:30 am, the phone rang. It was the school nurse who said, "Sarah is in my office and she's not feeling well."

At 9:45, I was signing Sarah out of school and bringing her back home to tuck her into bed. She's been pretty lethargic all day and just isn't feeling like herself.

We'll see how she is in the morning and go from there.

I must say that I've never had a call from a school nurse before! I've had calls from Sarah's nurses, doctors, nurse practitioners, radiologists and surgeons from a variety of hospitals but never a school nurse.

Wow. I feel like Sarah's medical history is finally complete.

____________________

Sunday, February 7

THE SEASONS OF SARAH

On Friday, Steve and I spent a while in an office supply store picking up some things for the church. I was happily wandering the aisles when I came across a section that featured educational products.

I came to a complete halt. I stared in great fascination. And then, just as if I were being pulled by an irresistible magnetic force, I walked over and stood right in front of all the books and supplies.

And people, I actually got teary-eyed. Yes, teary-eyed.

I thought, "I'm not schooling Sarah any more. And I MISS it!"

And then, yesterday I was sorting and organizing all of her schooling supplies and--you guessed it--I felt tears come to my eyes. Again.

I am just so sentimental. And I LOVE teaching. I LOVE spending time with my daughter. I LOVE the memory of all the conversations we had around the kitchen table with school books surrounding us--just Sarah and me enclosed in a cocoon of giggles, and love, and burgeoning knowledge.

But the Bible says, "For everything there is a season and a time for every purpose under heaven."

The home schooling season is done. The books we had are being returned. The pencil case containing the Pencil of Power (inside joke between Sarah and me) is being retired from active duty. The big school box will be unloaded and put into use somewhere else in the house.

And I'm sad.

And I'm happy.

And I'm melancholy.

And I'm jealous of the teachers who get to impart knowledge in my place.

And I am ever so THANKFUL for the teachers who get to impart knowledge in my place.

I'm grateful for the years I got to spend schooling Sarah and her big brother.

And I'm happy that I got to be the person who taught BOTH of my children to read. It's one of the greatest gifts I could ever give them.

As we start her third week of school tomorrow morning, I will send her off to Manteo Middle with tears and smiles.

Tears because I'm still saying my goodbyes to our precious home schooling days.

And smiles because I know that what Sarah is doing is exactly right for this season of her life.

Today, I am so thankful for all the seasons of Sarah.

(Collages were created by Wyatt Earp of www.wyattcomputers.com)

_________________________________

Thursday, February 4

A few pictures of a certain perky princess.

And now to answer a few questions from the guest book. (Sarah has delegated me to answer the questions although I am trying to get her to do a little bit more "school writing" in the near future.)

Q. Lesley asked if Sarah's school has dances.

A. Yes, there's actually a dance coming up in a couple of weeks. I told Sarah that she should have a lovely and gracious "no speech" prepared in case some young fella should ask her.

Although having said that, I'm actually not even sure if boys ask girls to dances in Middle School; maybe all the students just show up? Anyone know? (You can tell I am NOT a Middle School professional.)

Q. Mary H. asked how Sarah acted out Myth Busters for Charades.

A. Mary, that's a very complicated answer for a very complicated undertaking! :-) She tried to explain to Steve and I how she got the message across but trying to communicate that by typing it out would be nigh unto impossible.

Amazingly, a guy in the class did eventually guess it correctly!
________________________

Yesterday was a half day for Sarah's school so she was home by noon. The day before she had stayed until 4 pm due to an extra hour of math tutoring so the short day came along at just the right time.

Every night at dinner Sarah has school stories to regale us with and there have been very few tears this week.

She's found the same group of kids to sit with at lunch (3 girls and a guy) and it sounds like the three girls have a lot of fun "picking on" the guy. (Who seems to take his girl persecution with a good natured dash of panache!)

All in all, things are going well. Once again, Sarah, Steve and I would like to thank all of you for your amazing contributions to the guest book during this tough transition time. It's been great to read your stories, experiences, advice and encouragement.

It's not every girl who gets to start Middle School with a whole cheering section gathered from around the world.

Thanks to EACH of you; you are special to the Smith family!

___________________________

Tuesday, February 2

IT WAS ONLY A MATTER OF TIME . . .

Yesterday after school, Sarah told me that a boy in home room asked if she knew a certain guy there at school.

She said, "No, I don't."

And the boy said, "Well, he LIKES you!"

She's been at school only ONE week and someone already likes her?

Oh dear.

_____________________

Monday, February 1 (part 2)

AND NOW, A WORD FROM SARAH!

(Sarah wrote most of this on Sunday.)

Since Mom has constantly and persistently insisted that I write a little something for �my� site, I thought I would. I suppose it�s a good thing that I had to be encouraged to write instead of being dissuaded not to! So let�s start with the basics since the basics usually tend to be a good place start.

After I am dropped off at school by one of my parental people, I go inside by the cafeteria entrance and then go up the special, eighth grade staircase � that�s right, we upper classmen of middle school have our own staircase by which we go upstairs.

Once there, I go to my locker and attempt to cram my normal-to-smallish book bag into the 6x60 inch locker (that�s estimated, of course) and retrieve my binder and my first couple of books before hurrying to my desk in homeroom.

For Manteo Middle�s morning announcements, they have about four or five students (who apparently signed up for the job at the beginning of the year) talk about recent sporting events, the weather, occasional shout outs, the Pledge of Allegiance, and the all good �moment of silence,� which is a great place for me to catch myself some breath and whisper a prayer for the day.

After homeroom I head down the hall to the Science room, the class being taught by a teacher named Mrs. Porter. The subject is not my favorite, but so far it hasn�t been too hard, and as Mom has written before, that particular teacher is very supportive of me so that makes it easier.

Language Arts is the second class of the day � the class that I�m so used to calling English, but apparently it�s different here. A lot to get used to.

If we are done with our work during that class we can work on our �journals� (which aren�t nearly as fun as they may sound) or read our nonfiction book � a fabulous book from 1948 called Cheaper by the Dozen (by Frank Gilbreth and Ernestine Gilbreth Carey) is my current read.

Once most of the class has filed out and a few others have entered the room, Drama class starts, which is also taught by Mrs. Edwards. It�s fun, what with the games of Charades (when the others decide to quit talking, act right, and make an attempt to participate). In a few weeks we are going to start learning scripts for Shakespeare�s A Midsummer Night�s Dream.

Next is Social Studies (I am used to calling just plain ol� History), which is taught by Mrs. Burkhart--my favorite class and favorite teacher. We are studying North Carolina history, which is convenient considering the historical town we�re in.

Then it�s Math class � dare I go into much detail about it, except to say that it is taught by my homeroom teacher, Miss Grizzard. (And with my slight speech disabilities, I really have to stress the first "r" when saying her name, especially when I am mentioning her to other people. If I say her name wrong, others will say, �You have a teacher named Miss Gizzard?!?�). The math makes some sense for once, but the class can be a little demanding.

Dinner (oh, wait, I forget, this is an American school � not a British one � so it�s called lunch) is then served. The eighth graders go down to the cafeteria at 1:03 sharp and are given twenty-seven minutes to socialize with friends (that is, more than they already do so in class) and eat their lunchmeat.

After stampeding back up to the second floor, a class called �Braves� is the next period. It is somewhat like a study hall, depending on if you use the time to study, but it is also used as time to practice for competitions such as spelling bees, and a time to make up any homework that was not done or completed the previous day.

Then the last class of the day is either P.E. or Technology, depending on which week it is. This last week it was P.E. (definitely not one of my favorites), so this coming week will be Technology. I can�t really say who the P.E. coach is, since I have not met her, and same thing for the Tech teacher, who I will probably met tomorrow.

And that is a basic day for me. I have to do it eighty more times or so before summer. Jolly!

Before I close, I�d like to thank everyone for your encouraging comments and personal stories and tips you�ve shared about surviving and thriving at school.

And now I�d better get ready for bed because Monday morning comes around pretty fast!

--Sarah

____________________

Monday, February 1

Sarah worked for a quite a while yesterday on writing a school update but quite get it finished. We should be able to post it tonight.

In the meantime, she went to school in good spirits this morning, with no mention of nervousness and no sign of tears. This week we're going to try the "full day" experiment and see how that goes for her.

Here are Sarah and Snowy doing a little reading together before school this morning.

Of course, Snowy also had to go along on the ride to take Sarah to school. She's just not quite safe if her fluffy, ferocious, 6-pound bodyguard is not on duty!

More later . . .

___________________________

Friday, January 29

Well, except for a few, teeny, tiny tears later in the afternoon, today was another good day!

Sarah even felt comfortable enough to volunteer to get up in drama class and do a skit for Charades! That didn't seem to be too big a deal for her because she didn't even remember to tell us about it till later in the day.

Now let me just say that if I had gotten up on MY third day of a new venture and volunteered to do Charades, I guarantee I would have made sure it led the headlines for the evening news on ALL the networks!

But Sarah just thought it was no big deal!

Since the topic fortheir Charades was entertainment, she chose to do "Myth Busters," a TV show that she and Steve love to watch together. Although I consider myself to be a creative person, I could have never in a thousand years figured anything out to do for Myth Busters.

We were very proud of her.

Yesterday, she also got to the school library for the first time which of course, she adored. They were all supposed to choose a non-fiction book for a certain upcoming project. She chose "Cheaper By the Dozen," written in the 1930's. She's been reading it and chortling merrily over it ever since bringing it home.

Today is Pajama Day at school so she went off in full pajama-ed splendor at 7:45. She'll do one more "short day" and then we hope that next week will consist of regular days.

We're makin' progress! There's still some anxiety and stress, but we're headed in the right direction!

Thank you again for all of your encouragement and yes, she IS working on her own update!
_____________________

Thursday, January 28

Do you see even one tear on that cute, brave face? Nope!

As I wrote in the last post, Sarah had a much better day yesterday. Coming home early has made such a big difference because there isn't as much time for her circuits to get completely fried.

Today, the plan is for her to stay forty-five minutes longer than yesterday, but still leave before gym class. And next week, we're hoping she'll be back to a full day's schedule.

Her guidance counselor has been fabulous throughout all of this; she is patient, compassionate, wise and full of good ideas and encouraging words. What a relief for Sarah to be going to a school that offers that kind of support!

One thing her counselor has done that has been helpful is to set Sarah up for one-on-one math tutoring (1-2 times a week) starting next week. I am so relieved that she'll be getting that extra help since Steve's and my "math brains" seem to have been lobotomized!

Also, Sarah has met several more girls whose names she's learned, so that's been good. Of course, I've forbidden her to talk to any boys for the next four years of school, so she hasn't learned any "boy names" yet. (Just kidding!)

Actually, at her very first day of school, she sat with two girls and a guy. (Who bought her an ice cream cone! Yikes!) I guess my plan of keeping her far away from the fellas isn't working.

Something else that's cool is that the school's Resource Officer (a policeman who works at the school in law enforcement, student counseling, and law-related education) is a member of our church. (His wife is in charge of our Children's Ministries.) So whenever Mr. Jeff sees Sarah anywhere in the halls, he always has a friendly word for her. (You always want to stay on the good side of the school's Resource Officer!)

Another teacher at Manteo Middle is a youth pastor at the Methodist church in town; he's met Steve at a few ministerial functions. Even though Sarah doesn't have him for any classes, he sent me an email this week that said, "It was great seeing Sarah here at school yesterday. I just wanted to pass along that if there is anything I can do to help her with the transition at all, even though she is not in any of my classes, please let me know. The transition is always difficult, but I just wanted her to know that there is a great support system here for her in case she needs us."

How nice is that?

And one last thing: one of the instructors at the school co-teaches the "extra help needed" math class that Sarah is in. That classroom is on the second floor and Sarah's guidance counselor (Mrs. Simmons) is on the first floor.

The math teacher told Sarah, "Mrs. Simmons is your downstairs mama and I'm your upstairs mama. If you need anything or if you get overwhelmed, just come straight to my classroom."

It just makes me want to cry, knowing that there are so many people being so kind to our "little birdie" who is flapping her wings so bravely as she leaves the nest that has protected her for so long.

Kindness never goes out of style. It makes a huge difference in the smallest ways. And I, for one, am incredibly thankful for the kindness that is being shown to our little (big) girl as she leaves the cancer chapter behind (hallelujah!) and enters into a chapter of just being a regular kid.

What a journey it's been!

____________________

Several of you have asked if Sarah is going to write something about her week, and the answer is yes! Don't know when it will be posted yet, but it should be in the next couple of days.

Also, we have been amazed at the outpouring of support we have received from you all. The helpful, encouraging, loving comments in the guest book have been incredible, all the way from people sharing personal experiences to offering to help Sarah with math. You guys are just too much!

I'll close with one last picture.

Tuesday night, Steve stayed overnight in
Smithfield, to do some work on the house there. Since Sarah was feeling a little anxious again at bed time, I asked her if she wanted to sleep with me. So she and I peacefully drifted off to sleep together, after reading for a while in companionable silence. (She was reading the complete Chronicles of Narnia for the fifth time and I was reading an Agatha Christie novel.)

When I got out of bed the next morning, I just had to laugh at the unmistakable sign that a princess had been in our bed.

Pink polka dots in the middle of a sea of brown.

You gotta love it!

_______________________

Wednesday, January 27

Before school . . . no tears.

After school . . . no tears.

Forecast? Smiles breaking through the clouds.

Details to follow.

____________________

Tuesday, January 26

AND THE WEEK CONTINUES . . .

Although Sarah did pretty well after school yesterday afternoon, after she went to bed last night, she just couldn't get to sleep. When she finally came down to my bedroom to get me, she was crying and saying she just couldn't stop thinking about school and worrying about it.

I said, "You seemed to be feeling better this afternoon. Why do you suppose you're feeling bad again tonight?"

She said, "Well, this afternoon I was just glad to have it over with and be at home. But now I know that when I wake up, I'll have to do it again and I just can't go to sleep."

She cried again for a long time, and then said she was having trouble taking deep breaths because her chest was feeling so tight. She just couldn't seem to calm down.

After about forty-five minutes of talking, praying, back rubbing, and hair stroking, she finally fell asleep near 11 pm. I went to bed and slept fitfully until 4 am, when worry over Sarah's situation awakened me with a start.

It didn't help matters any that the one little page of math homework she brought home yesterday was not do-able by her, Steve OR me.

I thought, "Oh great. The first day of school and the three of us are already drowning in math that's too hard." That did nothing to allay my fears.

When I got her up this morning, she was in tears again, off and on, as she got ready. Her poor little face was swollen and pale and strained and I figured she was never going to last for another whole day.

After dropping her off, I took my weary, worried, and bedraggled self home and sent off an e-mail to Mrs. Simmons, Sarah's guidance counselor. I explained that Sarah was struggling and asked if it would be possible if she could skip gym class for just this week, in order to shorten her day up a bit.

Mrs. Simmons went one better and said that Sarah could actually leave at 1 pm for this whole week.

I was so grateful to hear that, so thankful that she was willing to be flexible to make Sarah's adjustment a bit easier.

When Sarah left for school this morning, I had told her that I was going to contact the school about her getting out a little earlier, but hadn't made any promises. It was so much fun to pull up there at 1 pm and collect the precious treasure that is my daughter!

When Sarah came down to the office, Mrs. Simmons chatted with her for a few minutes, just letting her know that we were going to shorten her days this week and then gradually add to them. I could see tears gathered in the corners of Sarah's eyes as she listened and I wondered how much she had cried during the day.

When we got home she told me she had cried for quite a while in Science during a test. She said that when a couple girls tried to talk to her, she couldn't even answer, because she knew that if she did, she would break down altogether. The Science teacher was very compassionate and knelt by her desk for a few minutes to talk with her.

Also, Steve B., the drummer from our church (who is heavily involved in educational leadership in Dare County) had stopped by the school for something and asked Mrs. Simmons how Sarah's first day of school had gone. When Mrs Simmons said, "Not very well," Steve asked if he could see Sarah for a minute.

Steve walked up to the Science class and called Sarah out to the hall and gave her an encouraging pep talk. That was certainly thoughtful of him.

So anyway, after making it home, and after a few additional tears (of exhaustion and relief and stress-release) Sarah bounced back very quickly and has been quite peaceful all afternoon. She did say today went better for her and seemed more positive about the whole experience, overall.

So. I hope that both she and I can rest a bit more peacefully tonight, knowing that this new challenge is face-able and do-able.

You all have been so sweet to encourage her in the guest book; thank you for that!

Here are a couple pictures of her shortly after she got home from school. Is she cute, or what?

Here's to a great day tomorrow!

______________________

Monday, January 25

HONEY, SCHOOL IS OVER. YOU CAN GO HOME NOW!

Sweet Sarah survived her first day of middle school! (Thank you for all your encouraging comments in the guest book.)

Here she is, all ready to go.

She was quite calm and composed this morning and so, even though I was feeling rather frantic, I tried to cue off her and act all matter-of-fact about what was going on. I actually wanted to gnash my teeth and shred my hair in a frenzy of worry but I (outwardly) remained calm. Aren't you proud of me?

We took Snowy along on the 1/2 mile ride to school, since he's always such good company. Sarah was chatting away happily like it was really no big deal to be doing such a scary thing. I was truly amazed by her composure, especially in light of my own inner turmoil.

Right as she got ready to climb out of the car she paused, became rather somber, and then looked me in the eye and said, "Bye, Mom."

And when she lingered just a moment longer with her eyes fixed on mine, I knew that what she was telling me wasn't really just "bye till the end of the day." It was more like "bye" to being home schooled, and "bye" to me being her teacher, and "bye" to her old, beloved way of life.

I had managed not to cry up till that moment, but after watching her walk bravely up the sidewalk to the school door and to a brand new chapter of life, I gave in to a few well deserved mama tears.

And then I went home to wait. And pray. And think about my very own personal Princess Groovy Chick, making her way in a scary new world.

When I lined up in the Official Parental Car Line to pick her up after school, I just couldn't wait to see her face and try to "read" what kind of day she'd had by her expression.

That was my first glimpse of her. I didn't think she looked too bad.

However, when she had settled into the seat, leaned her head back, and closed her eyes, I saw her lower lip begin to tremble and tears begin to creep down through her eyelashes.

I said, "Hold on, honey. Let me get you down the street a bit so you can have some privacy."

She cried all the way home and then cried for a long time, sitting on our couch between Snowy and me.

The first words she was able to get out of her mouth were, "That was only one day? It felt like a whole week!"

Gradually, though, as she talked and shared her experiences, I began to see the re-emergence of the Sarah spirit I'm so familiar with. As the minutes went by, a few brief grins even flitted across her face and she made a few humorous comments about this and that. By the time an hour had passed, this was what she looked like.

Surrounded by love, Snowy, and Kleenex.

Eventually she told me that her favorite subject was (North Carolina) History and that her least favorite subject was gym. She also said that a girl asked her to sit with her and her friends at lunch. (I would love to go and HUG whichever girl did that.) It was so wonderful for Sarah to have someone to eat with.

Right now, she's getting ready to dig into her homework, take a shower and go to bed so that she can get ready to do it all over again. I know the second day will be much less traumatic than today was.

She said that she did tell herself halfway through the day (when she was on the verge of tears), "Sarah, if you can go through a bone marrow transplant, you can get through a day of school."

And as for the title of this post?

After gym class (which was 7th period) Sarah noticed that her schedule mentioned a computer class. She asked someone where that classroom was and then she wandered on over there--tired, sweaty, overwhelmed and demoralized. There were a few teachers standing around in the class and she said, "Hi. I'm Sarah. I'm new. Is this the class I'm supposed to be in?"

One of the teachers said, "Honey, school is over. You can go home now." (Computer and gym classes alternate every week.)

Sarah said she had never heard such sweet words in her life.

"You can go home now."

And she did.

And I'm so glad.

________________________

Sunday, January 24

SCHOOL

Tomorrow morning at 8 am, I will drop off Sarah at Manteo Middle School.

Her first day of public school since 2nd grade. . .

The beginning of my second "retirement" as a home school teacher. . .

Her big step into a challenging, exciting, strange, fun, scary new environment . . . all wrapped up in one day.

I'm not sure if she's more nervous or if I am! We BOTH appreciate all your sweet notes in the guest book; I'll be sure to update tomorrow night to let you know how things went.

___________________

Tuesday, January 19, 2010

Read below the video for story.

Sarah's Miracle

About a week ago, I mentioned that we had played a Power Point in church to celebrate Sarah's 7-year bone marrow transplant anniversary. (Obviously, we won't play that every single year, but since the people in our new church hadn't yet seen it, we figured her anniversary was a logical time to show it.)

Some of you requested in the guest book that I post it here and, of course, I always want to try to keep my wonderful readers happy so here it is!

Enjoy the celebration of our miracle!

_____________________________

In other news, Sarah's friend, Victoria (they've known each other eleven years) is spending the week with us. The girls are having a great time together; I'll post some pictures soon.

Victoria went with us today when we toured Sarah's school; we saw her locker, met her teachers, and got her schedule. I was actually on the verge of tears a couple times (just nervous and anxious and excited) but I managed to not make a complete weepy, sniffling fool of myself!

Monday's the Big Day; we'll keep you posted!

Saturday, January 16

Thank you to everyone who has been sharing such good Sarah Advice in the guest book. She is blessed to have such wise and caring people as her Sarah's Spot Friends!

"Susie" signed in over at Smithellaneous and left a link to this video. I watched it and just cried and cried. (And here I thought all my "cancer tears" were behind me.)

Such a beautiful song which I appreciate all the more from a songwriter's perspective as well as from a cancer mom's perspective.

It's called "Braid My Hair"

_____________________

Thursday, January 14

SARAH AND SCHOOL!

In just a little over a week, Sarah will start attending school! Real school! Untaught by Mom school!

(I thought I'd make that announcement over here first-- rather than over on Smithellaneous-- since you all are Sarah's "homies.")

She and Steve and I went to the school yesterday and spent two hours with a guidance counselor and the 8th grade curriculum director to figure out a plan that would allow her to stay in the mainstream with the other 8th graders but still get the extra help she needs in math.

Our original plan had been to home school her all the way through the 8th grade, partly because of our transition and partly because she was so far behind in math.

Also, since the Christian Academy she had attended in 7th grade has closed, she would have had to go to a new school in Smithfield for half the year and then start another new school here in Manteo for the second half of the year. We figured that would be very stressful, and also be hard to juggle with all the traveling we did during the transition.

But now that all the transition part of our life is over, last week I sort of got hit by a lightning bolt and I thought, "You know, kids go to school all the time and get extra help with stuff. I'm sure Sarah would do okay in public school."

Our main issue in putting her into school right now concerns socialization. Ever since we moved here, she has done her school work in the morning and then spent the rest of the day by herself or with just Steve and I.

Sunday morning church, and Wednesday night church have been her only outings and I was just starting to worry about her waiting nine more months to get "plugged in" with more kids her own age.

She was a bit taken aback when I first talked to her and understandably anxious. But she eventually began to see the wisdom behind the move and is getting really excited. (Although still nervous.)

As I explained to her, cancer robbed her of at least two years of normal childhood and normal socialization. And since last year (when we were between churches), she didn't have many social outlets, I didn't want her to have a whole 'nother year on top of that without normal socialization.

The guidance counselor heartily agreed with the decision; she said it would be so much easier for Sarah to make the transition to High School with a semester of 8th grade under her belt since she will already know so many other students.

Manteo is a small town with small schools; the High School here is in the top 7 per cent of all schools in the nation and the middle school has an excellent reputation, as well. It has 6-8 grades with only a little over 300 students.

I'm so glad it's a smaller school so she won't be quite as overwhelmed. The building is new and cute and is impossible to get lost in. (Which is always a plus.)

So anyway, that's the report for today!

If any of you have any good advice to share with her about going to a new school and being the new kid (or just words of encouragement in general), we'd love to hear them!)

______________________

Sunday, January 10

We showed a Power Point of Sarah's cancer journey this morning in church and when it was over, the congregation gave her a standing ovation.

Happy 7th Transplant Anniversary, Princess Groovy Chick!
___________________

Saturday, January 9

The Last Archived Excerpt in Sarah's Countdown To Her Transplant Anniversary

SIMPLE FAITH AND A SPONGE BOB SHIRT
Summer 2002

Today, I took Sarah to our local hospital to get her blood work done. The last two times she's whimpered on the way in and outright cried when she got to the lab.

Today she said, "I'm going to save my big fears for things that are real scary, like surgery. I'm going to save my little fears for things like bloodwork."

She marched in there, greeting people in the hallways, swinging her arms, looking like she was headed for a day at the beach. While we were waiting for the technician to come get us she engaged the receptionist in casual converstation.

First of all she said, "I have a new Game Boy Advance. Would you like to see it?"

With that important issue out of the way she blithely continued, "I have cancer. The medicine the doctor is giving me makes me lose my hair. Would you like to see that, too?"

She then removed her hat with a flourish that was decidedly unashamed. I sat beside her in awe, attempting to take in the lessons of life my grown up little girl is teaching everyone who comes into contact with her.

As we left the hospital she said, "Mommy?"

Now, before I go any further, let me mention that I have Mommy Radar. I know by her tone of voice that some questions are going to be, "What are we having for lunch?" I know that there are other questions that are going to pierce my heart and that any answer that I will try to give will be entirely inadequate. This was one of those questions.

"Mommy," she quietly asked, "When is God going to heal me?"

Suddenly the 90-degree air felt cold and her soft, trusting hand in mine felt like a rock. I couldn't bear to say she wouldn't be healed and I couldn't honestly promise she would be healed. And yet the question hung there in the air, the query of a 6-year old theologian who, if the truth were known, probably has a better grasp on life than her middle-aged mommy.

As we continued across the parking lot we began to discuss the issues of healing and the issues of trusting God no matter what happens, believing that He loves us greatly and will show us the purpose for our suffering.

She looked me straight in the eye with her lazer gaze and said, "So what's the purpose for my cancer?"

I began to tell her about the some of the emails we've received about peoples' lives being touched by her illness, about people spending more time in prayer. I told her about Mommies and Daddies who are taking more time with their children, and being more patient with them because her cancer is helping them remember just how precious children are and how precious life it.

I also said that since she was starting to get over her fear of bloodwork and hospitals that she could help other sick children who are afraid, and she could be their friend and tell them about Jesus.

Her eyes got very wide and she said, "That means I'll have a ministry just like you and daddy!"

All the way home, she talked and talked about her ministry; in fact she even wanted to know what her title would be. I told her it could be, "Hospital Missionary and Children's Minister."

She was quite impressed with that and sat up a little straighter, smoothing her Sponge Bob t-shirt to better take on the dignity of her new positon. As I watched her in the rear view mirror, I could could see by her bright eyes and lit up face that she was making that oh-so-important shift in her thinking, "Yes, I'm sick, but my sickness has a purpose."

And whether God heals her here or heals her in heaven I believe that countless people will be challenge and changed by this trusting, brave, bald 6-year old minister of the Gospel clad in simple faith and a Sponge Bob shirt.

With our good friend, Dr. Tracy.

Christmas 2002, the year she was diagnosed. How thankful we are for seven more Christmases since then!

______________________

Friday, January 8

Here's today's "Countdown to Transplant Anniversary Entry."

SUMMER 2002

This week, big smiles were in evidence on Princess Groovy Chick's face when a special package arrived that we'd been waiting for. I took her up to our room, said I had a surprise and pulled out her new wig!

You should have seen her face; it gave the sun some pretty stiff competition!

She put the wig and new hat on and positively beamed at herself in the mirror. Finally she was able to stop smiling long enough to say, "It looks like I don't even have cancer!" (That comment in itself was worth the price of any wig!)

I felt like we had done a good job choosing the color and, to better compare shades, took out the pony tail that had been cut off before her hair began falling out.

I said, "Look Sarah, the wig matches your old hair almost perfectly."

She suddenly got very still as she took that pony tail in her hands and stroked it quietly saying, "I just want to touch my old hair again. I miss it."

After another moment of contemplative silence she lit up again and started bouncing around the room saying, "Is it time to go to church yet? Is it time to go to church yet?"

I followed her across the parking lot into the church building and it is no exaggeration whatsoever to say that my little girl was struttin' her stuff! It was like she was announcing to anyone who looked her way, "I have hair now, just like you!"

Fortunately our church is blessed with kind and sensitive people who understood what a big deal it was. Two or three kids made nice comments and then several ladies in the church circled around her, oohing and ahhing and telling her how gorgeous she looked.

If she would have smiled any bigger her face would have cracked!

Here a few pictures of her Hair Journey

Right as she was starting chemo

Without hair

Putting her wig on her doctor

Bald with a bow

Just a hat

Dressing up wig

Hanging out in the hospital play room wearing a fun wig

Sarah's precious wig that helped her look like "she didn't even have cancer."

___________________

Thursday, January 7

Before posting the excerpt for today (in the countdown to Sarah's transplant anniversary), here are a few recent pictures of Sarah cooking dinner for the two of us while the guys were out of town. (Corn dogs, baked potatoes and apple slices.)

And now, the excerpt.

Friday, May 17, 2002
Baptist Hospital
Winston Salem, NC

"Your daughter has a rare pediatric cancer called Neuroblastoma and has a 20-30 percent chance of surviving five years."

Those words, spoken by Dr. Wolford at Baptist, changed everything. Our lifestyle, our career, our future, our finances--they all changed.

And those words, spoken by Dr. Wolford, changed nothing. Our faith, our love, our joy, our unity as a family--none of it changed.

Cancer does that. It shakes you and stirs you and changes what can be changed; however, the foundation and the bedrock can't be touched.

Our family has been to the brink of death and back and we have cried more tears than we knew existed. We have planned funerals in our head and fought against wave after wave of fear and panic and depression and dread.

We have seen Sarah suffer indescribable pain and go through traumatic procedures and surgeries. We have seen her isolated for months at a time, unable to play with friends or leave her house. We've seen her high on morhpine, we've seen her go without eating anything by mouth for almost a month. We've sat up with her throughout the night while she threw up and cried and wailed and asked, "Why me?" We've heard her ask questions about heaven. We've heard her say, "When I die, will you please put my blankie in the coffin with me?"

We've watched her long, luxurious, blond curls fall away to reveal a shiny, sweet head full of baby skin. We've heard her ask through tears, "Can a girl be pretty when she's bald?"

We've seen tan, rowdy, robust children run and play and ride bikes while our frail, wan, bald child stood back and watched them with longing in her eyes.

We've rushed her to the hospital with fevers and seen special plans cancelled because of unexpected hospitalizations. We've sat down with her and told her she had relapsed and felt her mourn and grieve in our arms. We've planned our lives and schedules around daily blood work and learned more medical terms than we ever wanted to know.

We've listened to her fears about upcoming surgeries, and treatments, and pain and we've hugged her and prayed with her and taught her to hold on to hope even when hope seemed a small thing in the face of a huge monster called cancer.

However . . . .

We've also gotten to tell her, "Sarah, your scans are clean," and watch the light rise in her eyes. We've gotten to say, "Sarah, we're going to Hawaii on your 'Make A Wish Trip!'" and watch the joy and anticipation light up her face.

We've rejoiced over the infrequent times when she was released from the hospital earlier than anticiapted, we did happy dances when her white count rose and we cried with her amazing nurses when her scan results came back better than expected. We've received visits and prayers and gifts from family and friends and have been loved beyond anything we knew was possible.

Our family has battled cancer together and in the process Steve and I have watched our "hothouse flower" of a daughter turn into a strong oak tree. We've watched her be completely changed by her battle and emerge from it with steel in her backbone and strength on her face.

We've watched her big brother develop compassion and empathy and we've wept as we watched his gentleness and tenderness with her during the worst parts of her battle. He learned so many hard lessons of unselfishness as he watched his sick sister gobble up his parents' time and energy.

He watched her get hundreds of gifts over the years and not once did I ever hear him say, "Mom, why does Sarah get so much stuff?" (And let me say right here--THAK YOU to all of those through the years who also did nice things for Nathan. You'll never know how much that meant.)

On this day, May 17, 2008, exactly six years after the news first came, we rejoice in a healthy, beautiful, happy child. Every week I hear a story of another child who has died from her disease, many of them only a year or two after their diagnosis. I cannot explain why Sarah was allowed to live this long. I cannot explain why the sorrow of death hasn't visited us. I can only say that I am more grateful than words can ever describe for a daughter who is still here to bake brownies with, a daughter to hug and to tuck into bed at night.

There are still no guarantees for the future, and I realize that. But I also realize that six extra years is a gift of unutterable proportions and I am grateful for every single hour that has made up those years.

I am now cautiously daring to dream about driver's licenses, and first dates, and college plans. I am daring to dream about life beyond six years, life beyond the valley of the shadow of the death.

Let me close by saying, "Happy sixth anniversary, sweet Princess Groovy Chick. Your daddy and Nathan and Snowy and I love you more than words can ever say. You are the sunshine of our lives."

______________________

Wednesday, January 6

Since January 10 will be Sarah's seven year anniversary of her bone marrow transplant, I'm going to post a few treatment-related (not just transplant-related) excerpts from past journals.

As I've said before, when I look at her now, it's so easy to forget where she's come from and what she's been through. Remembering the past helps me truly appreciate the gift that she is today.

The excerpt I'm posting today was written a few days after we found out she had relapsed in 2006.

JULY 2006

Today was another day full of appointments of all sorts, from starting yet another IV, to a visit with a social worker, to an injection, a bone scan, a visit to the pharmacy for codeine (to help with post- biopsy pain tomorrow) a pulmonary function test and a consultation with Dr. Driscoll.

Sarah was in great spirits all day (of course, she slept ELEVEN hours last night) and I enjoyed her company so much. When she�s talking and laughing and carrying on in her usual way, I find myself just sitting back to watch her, to drink her in, to memorize the expressions of her face and the characteristic gestures she makes, to just inhale the sweetness of her presence.

It is utterly unfathomable to me that in six months or two years that face, that precious person, may be taken from me. You can be sure I am doing EXTRA treasuring of each moment!

Here are some of the things I�ve �treasured� in the past week:

1. We were in the car with Steve, waiting for a long train to pass. Sarah watched it for a while and finally inquired, �Why don�t they ever paint trains �happy colors?��

I will never again look at a brown/gray/black train rushing by without thinking of her question.

2. As she leaving the room after her CT scan this week, she looked over at the technician and said, �Thank you.�

By the startled look on the tech�s face, I got the feeling she doesn�t get thanked very often for doing scans.

3. Before one of her scans, a nurse asked her if she liked to watch TV. Sarah replied, �I read a lot of books, I like to create things, I�ve written a book and I have a very STRONG imagination.�

Which doesn�t mean she never watches TV; but she sure does love her creative pursuits!

4. I wrote a few days ago that shortly after she was diagnosed she told me that she went up to her room and �spent some time in prayer.� The day after that she told me, �Mom, yesterday I didn�t just pray, I praised.�

I was amazed that she was able to move beyond asking God for answers and was able to get to a place where she simply praised God for who He was, not for what He could for her. That was a big step for her.

5. Later that night (after her prayer time) she came into my room to show me a quote she had found from George Washington. I can�t remember it exactly but it said something like, �The harder the struggle, the sweeter the victory.� She said, �Mom, that�s a quote I need to memorize and think about a lot.�

Along with the encouraging Bible verses she�s been gathering in her little book, she is also choosing certain Christian songs that are especially meaningful for her to listen to when the times get tough.

The image that comes to my mind is one of a warrior preparing her weapons for battle. Prayer, praise, great quotations, good music, encouraging Bible verses, and a sense of humor--I�d say she�s pretty well equipped for the battle ahead.

And one more memory that is not quite so cheery but is very poignant.

The day after we told her about her relapse she said, �You know, Mom, I wish we didn�t have to hit the rewind button on my life. I was pretty happy with being free from all that stuff, being a normal kid. I want to hit �play� and just keep on living."
____________

And now as I sit here on January 6, 2010 looking back at those words written in 2006, I am thankful that she has indeed "kept on living."

TUESDAY, DECEMBER 29

TAGS FROM ANOTHER CHAPTER

When you pack and unpack for a move to a new house, you tend to find a lot of interesting things.

A case in point? These plastic drawers.

I had been using the drawers for bathroom storage for several years, but they were at a low level so I never bent down to really look at them; I just opened them, grabbed what I needed and went on my way.

However, when we moved them to the new house and the movers stacked them all on a counter, I caught a glimpse of what the drawers said and was immediately transported back seven years to the days after Sarah's transplant.

I remember all the medical supplies and medications I was in charge of during those challenging days and how I thought if I could just get some plastic drawers for the supplies and label each drawer, it would make my job just a little bit easier.

So I did. And it did.

And I never realized that I hadn't taken those little tags from another chapter off the drawers.

Standing there in a new bathroom, in a new house, in a new town I was overcome with renewed feelings of thanksgiving and gratitude that the days of plastic drawers filled with medical supplies were over.

And I was also thankful that the subject of all those medical supplies is currently so healthy that her only medicinal line up consists of an occasional tablet of Tylenol.

Yay, God! Yay, doctors! Yay, Sarah!

____________________

Thursday, December 24, 2009

This is what Sarah wrote on the white board in the kitchen yesterday.

And this is what we'd like to share with you today--a pre-Christmas, Christmas card from two "best buds."

Today, those best buds, Nathan, Steve and I will head out to Charlotte for the weekend.

We'll carry with us the special joy of knowing we are blessed to have so many wonderful Caringbridge friends.

Merry Christmas to each one of you!
_______________________

Saturday, December 19, 2009

THE GIFT YEAR

Most of us have heard of the Gap Year, a period of time that some young adults choose to take between high school and college in order to travel, work and get various kinds of life experience.

But there�s another kind of year to be experienced--a Gift Year.

And just what is a Gift Year?

Our version of a Gift Year was that while Steve was between pastorates, he and I got to spend 24-hours a day with Sarah. For a whole year.

Every day. All day. Every evening. Breakfast. Lunch. Dinner. Reading before bed. Watching movies together in the living room. Talking over the dinner table. Going to Wal-Mart together. Attending church and getting to sit as a family.

Playing Taboo and Uno and laughing hysterically. Making up all sorts of original jokes and engaging in formidable bouts of word play. Creating puns. Laughing at puns created. Arguing over word usage. Taking numerous trips to the dictionary. Hearing countless questions asked and answered. Having a multitude of somber conversations scattered with tears and many other hilarious conversations spattered with silliness.

Giggling at Snowy�s antics. Walking together through our tree-lined neighborhood. Cooking meals as a mother-daughter team. Doing dishes together. Cleaning house. Doing chores.

Hugging. Smiling. Singing. Sharing. Forgetting that Sarah was a girl in her teen years who was supposed to start showing signs of sullenness and rebellion.

Living the Gift Year. Loving the Gift Year.

In October, Sarah and I were sitting together in a waiting room at Duke where I was reading a magazine article on parenting. The article somberly informed its readers that �if your teen is not annoyed with you at least half the time, you are doing something wrong as a parent.�

I was shocked! I was dismayed! I was hit with the horrible realization that obviously I was a failure as a parent! A parent who was failing in the worst way! Alas! Woe was I!

So I went straight to the source. I went straight to the parented person in my life. I asked, �Sarah, honey, are you annoyed with me at least half the time?�

She raised one eyebrow. She saw the muted anxiety on my face. She pondered the proper answer for a moment and then replied tentatively, �Sure?� (Like, is that what you needed me to say?)

We both smiled at the absurdity of the question and the absurdity of the answer and went right back to living.

Living the Gift Year. Loving the Gift Year. Loving the daughter (and doggie) we got to spend it with.

THRIFT STORE OUTFIT

Thursday, December 17

There's a thrift store about a block away from our new house, so of course Sarah and I had to go check it out.

She found this cute blouse for a couple dollars. Dontcha just love a bargain? AND a beautiful bargain hunter like Sarah?

______________________

Tuesday, December 15

A SARAH BOOK REVIEW

Book Title: The Mysterious Benedict Society
Author: Trenton Lee Stewart
Genre: Adventure, Friendship, Science Fiction

Series Includes: The Mysterious Benedict Society, The Mysterious Benedict Society and the Perilous Journey, The Mysterious Benedict Society and the Prisoner�s Dilemma

Ages: 10

Gender(s) aimed at: either

Official Summary From The Book:

�ARE YOU A GIFTED CHILD LOOKING FOR SPECIAL OPPORTUNITIES?� When this particular ad appears in the newspaper, dozens of children enroll to take a series of mysterious, mind-bending tests. (And you, dear reader, can test your wits right alongside them.)

But in the end just four very special children will succeed. Their challenge: to go on a secret mission that only the most intelligent and resourceful children could complete. With their newfound friendship at stake, will they be able to pass the most important test of all?

My Summary:

Now with this series being one of my all-time favorites--right up the alley with The Chronicles of Narnia and such books--you�d think it would be easy to summarize the whole thing in complete sentences and accurate punctuation and using caps lock only when necessary. Not so.

Whoever wrote the official summary had the easy job. All he had to do was write enough to keep potential buyers of the book interested long enough for them to, well, buy the book. But I�m not doing this for profit, but merely to raise awareness. So, here I go.

Reynard Muldoon � the understood main character, around the age of twelve years old, and usually referred to as Reynie � has lived most of his life an orphan, living at the orphanage of Stone Town � a small, average American town. He is often ridiculed by his peers for his love of reading, but is consoled by his good-natured tutor.

(He surpassed his requirements, so the only thing the orphanage school knew to do with him was to assign him his own personal tutor � Miss Puramel.)

One morning in particular changes Reynie�s life for the better when he and Miss Puramel are eating breakfast and he is reading the morning paper as usual. He sees the odd advertisement mentioned in the official summary above, and is instantly intrigued. Asking if they are especially talented? An ad directed at children and not their parents, of which he has none? He must find out more.

When given permission, Reynie arrives at the appointed building, prepared to take a test, and the only thing he knows about said test is that if he passes, something like special privileges will be rewarded. As to what these privileges are, well, you�ll just have to find out right along with him.

Speaking of which, there are a lot of other kids taking this test right along with him. And in the end, only Reynie and three others � a nervous, incredibly intelligent boy nicknamed Sticky, an outgoing, incredibly agile girl named Kate, and a crabby, incredibly small, girl named Constance � manage to pass not one, but two of the tests.

This done, the four new companions meet an interesting variety of characters such as the ever-gloomy Milligan, the ever-cheerful Rhonda, the ever-hungry woman code named Number Two, and the titular and ever-amiable Mr. Benedict himself.

Superbly written, the stories shift from one place to another with detail proving to be aplenty, these including a very mysterious place called the Learning Institute of the Very Enlightened, located on Nomanson Island in Stone Town Harbor, and in the second book, many bits of Europe, a huge cruise ship, another harbor, and an abandoned, mountainous village.

And as this being Stewart�s first story for children, I must heartily applaud his usage of the English language.

Even though I�ve not read the third book of the trilogy, I can already highly recommend this series for anyone who loves a well-thought out, humorous, riddle-invested, Morse-code using, page turner of a story.

_______________________

Monday, December 14

Hello out there! Yes, we're still here--just buried under boxes.

Sarah has been diligently working on a Secret Benedict Society book review and also writing some answers to a few questions that have been asked. We'll be posting all that in the next day or so, along with some pictures.

Thanks for continuing to stop by and thanks for your patience with the tardy-in-posting Smith women.

Happy Monday to you!

_______________________

Tuesday, December 8

BRIEFLY . . .

I just wanted to check in and let you know that things are going quite fine and dandy in Sarah Smith World.

And yes, I do keep on telling Sarah that she needs to write something for this site herself since so many of you love her writing; so far, though, I haven't had much luck!

She is working hard at trying to get her new bedroom organized; I think that she has so much space to work with, it sort of overwhelms her. I told her I'd go in there with her tomorrow and help her get some stuff put into place so that she feels like things are coming together a little better.

She has kept such a good attitude throughout all of this transition and upheaval; very few things rattle her composure. I guess when you've been through cancer and a bone marrow transplant, small things like a move to a new town just don't rate all that high on the Trauma List!

It's been fun to read your various responses to Sarah's list of things she wants in a husband. I can't wait to meet whomever the lucky fella is. My first (and only) son-in-law!

Nancy asked a good question on the subject of a husband when she asked, "Would you allow Sarah to marry a black man?"

The short and sweet answer to that is that whomever Sarah falls in love with
--regardless of ethnicity or nationality--Steve and I will trust her heart, we will honor her choice and we will welcome into our lives and home whichever man finds the path to her heart.

For tonight though, husbands and marriages and adulthood are (thankfully) on the far horizon. Tonight Sarah and I are going to get snuggled into bed and read another chapter of our latest book, "The Mysterious Benedict Society."

She read the book earlier and absolutely fell in love with it. Now that I'm reading it with her, I can see why she likes it so much. It truly is excellent.

So off we go . . . the book and the bed await!

Thanks for stopping by and especially taking the time to leave a message. Our family appreciates our website friends so much!

_______________________

Friday, December 4

SARAH'S WORDS

Sarah emailed me her Christmas list a couple weeks ago and then e-mailed again when she thought of something else.

The first e-mail ended with:

"Possibly more to come. I'm having a rather large brain-meltdown/conceptual inertia thing at the moment, so I can�t really think of much else."

The second email ended with:

"More to come... maybe. Possibly. Perhaps. Mayhap. Actually, I have no idea if I'll think of anything else. I was just trying to imply enigmatic undertones, I suppose."

Can you tell our girl loves words and quirkiness?

On another subject, she and I were riding in the car together recently and I asked her what qualities she was looking for in a husband.

Here is her response:

1. He has to be a Christian

2. He has to have a good sense of humor.

3. He needs to have some hospital/cancer awareness so that when he takes her to the doctor for long- term follow up appointments, he has some idea of what's going on.

4. He has to love words and books.

5. She wants him to be strong enough to protect her but not all "big and macho."

6. He has to love music.

7. She wants him to enjoy travel.

8. Has to be good with children and animals

9. An English or Irish accent would be wonderful but not necessary.

So there you have it! Princess Groovy Chick's list of the perfect fella!

Whoever he is, I'll have to add one more qualification:

10. He has to think his mother-in-law is marvelous.

Thanks for dropping by!

__________________________

Tuesday, December 1, 2009

CAN YOU HUG A HOUSE?

A few weeks ago, Sarah and I were talking about our upcoming move and saying how much we would miss our house. She said she would love to find a way to hug a house good-bye. And she sorta, kinda succeeded, as the pictures below will illustrate.

Yesterday, towards the end of our "loading everything on the truck" day, I went and found her standing alone in her empty bedroom with tears in her eyes.

I hugged her and we stood quietly together, staring at the walls, listening to the memories, hearing the echoes of the years that had changed my little girl into a grown up young lady.

After a few minutes I said, "Sarah, I'm going to go out now. Why don't you go ahead and lock the door and take some time to be in here by yourself to cry and say good-bye."

And she did.

She spent quite a long time in that room of her childhood and I was so glad that she took that opportunity.
Because you can't go forward until you've said farewell to yesterday.

And now? Today? She is excited about going over to our new house in Manteo and saying hello to the place that will shelter her dreams and joys and tears in the years to come.

Today, she will hug a house hello.

_________________________

Saturday, November 28, 2009

WORDS

Before Steve prayed over our Thanksgiving dinner last week, he went around the table and said something that he appreciated about each person. He started with me and then went on to Sarah, saying something about much he admired her love for words.

He continued around the table, said a prayer, and then we all started to eat. Well, all of us started to eat except for Nathan. He got up from the table, disappeared into the kitchen and then came back to the dining room and handed a Post-It note to Steve. It said, "Dad, when you went around the table, you forgot to say anything about Sarah."

(Nathan hadn't realized that when Steve spoke his "words about words," he had moved on from me to Sarah.)

Steve quietly explained to Nathan what he had done and Nathan, looking a little sheepish, went back to eating.

After dinner was over, Sarah, who had been aware of the earlier conversation, looked all over the kitchen and the dining room for that Post-It note. She told me that she wanted to keep it because it was special.

She finally asked Nathan about it and found that he had crumpled it up and put it in his pocket.

She said, "Nathan, those words you wrote were special; I want to save that piece of paper."

And on that sweet Thanksgiving evening, the eyes of my heart observed several important things.

I saw a husband and father speak words to affirm his family.

I saw a son write words to make sure his sister hadn't been overlooked.

I saw a daughter use words to let her brother know that she treasured the words he had written about her.

And I was reminded again of why I love words so much. Words, when springing from a loving heart, bring life and healing and joy and affirmation.

So simple. So profound.

Words.

______________

This is the box that Sarah keeps all of her special papers in. (She has it all labeled and ready to move.) Nathan's Post-It note has already made its way into the box.

The Smith Sibs have been sharing laughter, sharing love, and sharing words . . .

. . . for a very long time now.

Monday, November 23, 2009

FRIENDS, GOODBYES AND TEARS

A couple nights ago, Sarah's friend, Eileen, came over briefly to say good-bye. They've known each other since the fourth grade and they went to school together for four years.

Eileen has stayed overnight here several times and has come over after school dozens of times over the years.

Eileen brought with her several sweet gifts for Sarah, in addition to a going away card that she had everyone in the 7th grade sign on the last day of school. She had saved it all summer in order to give to Sarah right before we moved. That was such a thoughtful thing for her to do.

The two girls had a wonderful time talking and laughing for a few minutes and then Eileen had to leave because her dad was waiting out in the car for her.

They said one more good-bye and Eileen left. As Sarah started setting the table for dinner, I noticed her demeanor looked a little strained and her cheeks were red. Finally, she started to cry.

After a few minutes had passed, she seemed to feel a bit better but when we sat down to eat, she nibbled a few bites and then said she had to go upstairs for a while because she couldn't eat while she was so upset.

She cried, off and on, for the next couple hours, looking over all the things that Eileen gave her, reading the card over again, remembering special memories of her friends, her school, her church, and her town.

Sarah is not one to cry a whole lot and when she does cry, she gets over it pretty quickly.

Because of that, I knew she was experiencing an unusually deep level of grief and sadness to cry for the whole evening. I sat with her, listened to her, reminisced with her and then gave her some space when I felt like she needed it.

The evening passed and the tears passed with it. But the memories of those special friendships will never leave.

I told Sarah, "The people you've known during your five years in Smithfield will go with you every place you go. Their influence in your life will never fade away."

All of us still remember people we knew as teenagers and we have carried those people with us for all these years. Sarah will do the same thing with Eileen and her other friends, as well as her favorite school and Sunday school teachers.

Life goes on and seasons change. But true friends don't ever really go away. To quote a lyric from Michael W. Smith, "A lifetime's not too long to live as friends."

Friends

P.S. Just a word about Steve: Since Sarah was upstairs after dinner, he did all the dishes for her, just to surprise her and make her feel better. What a great Dad!

__________________

Friday, November 20

TEXT MESSAGES

I mentioned in Monday's post that when Sarah went to the youth convention, we sent text messages back and forth to stay in touch. Here they are for your reading entertainment!

Just a few minutes after she left . . .

Sarah: Hey, y�all.

Becky: Hi, I was just thinking of texting you.

S. Great minds think alike.

B. Snowy asked if any boys have kissed you yet.

S. No not yet.

A few hours later . . .

S. Husten, we have arrived.

B. We just got to Manteo, too. Are you doing okay?

S. Yep. The hotel�s really nice.

The next day . . .

B. How is it going?

S. We�re shopping right now; just got a game for my DS.

B. Sounds like fun. Be sure to buy me something expensive. :-) Love you.

That evening . . .

S. We�ve been on the road for about an hour now. Only four more to go!

B. Can�t wait to see you. What time will you be home?

S. We�re not sure yet, we still have to get supper. It will probably be around nine or ten. I miss you guys.

B. I miss you more. I will stay up to welcome you home.

S. Awww thanks. If it�s going to be any later than ten, I�ll let you know.

Later . . .

B. Hi babe. Are you getting close?

S. I�m not sure since I don�t think we�ve come to any bridges. You don�t have to stay up, momma. It�s going to be late . . . around 10:45.

B. I am going to stay up young lady and no more arguing from you! :-) Let me know when you get to the first of the two big bridges.

S. Alright. Will do. I got one of the cutest convention shirts in the history of forever for 15 bucks.

B. Wow! Can�t wait to see it.

A message between Sarah and Steve . . .

Steve: Snowy and I are sitting on the sofa whilst I sippeth my tea. And thee?

S. I be-eth at the mall of shopping. We are having a most jolly time.

____________________

Monday, November 16

SARAH'S TRIP

You guys are so funny. I didn't even make the connection between Sarah going off with a group of stranger and MY trip off with a group of strangers when I was seventeen. (And met Steve.)

I'm glad you reminded me; I'm a little slow on the uptake, sometimes.

Here's Sarah, walking Snowy one more time before getting in the van with the other youth.

A final hug.

I have to admit that when we drove away from her, I was crying. I was so worried she wouldn't find anyone to hang out with and that she'd be lonely and that she wouldn't have fun or she'd be overwhelmed by the crowd of 1200 teens.

We did text some back and forth, so that was nice. (In a day or two, I'll post some of the texts; they were a lot of fun.)

She got back to Manteo near 11 pm Saturday. I stayed up for her since I wanted to hear all the details. Turns out she had a wonderful time and was glad that she went.

I was so happy--all those tears and worry for nothing. But hey, I'm a mom. We're supposed to act like that, right? (Someone please say yes!)

The next morning, the youth group went up front and each of them told about some special aspect of the weekend. Steve and I were so proud of Sarah; she was poised and articulate and had her comments well thought out. In fact, we've never seen her do so well in front of a crowd before. We think we're gonna keep her!

She thanked the leaders by name who had gone along the trip and also mentioned how much she enjoyed the speakers at the conference. And she said the music was really good. But loud. (Sarah's ultra sensitive to loudness.)

Here she is, our poised Princess Groovy Chick!

Okay. Time's up.

I'm about to drive a half hour with Steve to someone's house to look at a couch we found on Craigslist. We're in the process of furnishing his church office and are on a fun, massive bargain hunt. Since we don't have anything else to do with our time. Like, um, start packing 357 boxes.

More later . . .

____________________________

Thursday, November 12

A FEW THINGS . . .

Thankfully, Sarah is feeling better after the last couple days of being so tired and non-energetic. She had a runny nose and sinus headache so it seemed to (thankfully) just be a cold. I love it when her ailment is "just a cold!"

I'd like to say thanks to those of you who have bookmarked Smithellaneous on your computers and are getting there that way instead of clicking on the link on this page. I'm going to try to leave the link in place (especially for new visitors to Sarah's Spot) but it truly helps out my "stat configurations" the more you use your bookmark. Thank you!

As for Sarah's visit to Duke yesterday, they had to do something with her hearing aids that involved a computer--I don't exactly understand it but they reconfigured different settings and frequencies to make the hearing aids sound better for Sarah. (Can you tell I'm not up on all the technical stuff?)

They are also in the process of making custom ear molds for her since the hearing aids were really making the insides of her ears hurt.

She was so happy to get home; going to Duke is not really the way she wants to spend her day. And thankfully, she doesn't have to go there that much anymore. Yahoo! It's great to be Duke-less!

Tomorrow, Sarah is going to be emarking on a bit of an adventure. The youth group at our new church in Manteo is taking a group of kids to the annual state youth convention in Greensboro, NC. (About 5-6 hours from Manteo.)

Sarah has decided to go along. Now that may not seem like a very big deal at first until you understand that probably 99 percent of the several hundred kids attending will be traveling and staying with teens in their youth group whom they've known a long time.

Sarah is going to travel with a group of teens she doesn't know and then go to a huge youth rally (her first time ever) with a bunch of kids who are strangers.

When I told my two sisters and Nathan what she was doing they all said, "Really? She is sure brave!"

I just want to go on record as saying that Steve and I are very proud of her for taking a huge step out of her comfort zone and going on this trip. She is one fabulous young lady and we are honored to be her mom and dad.

If you think of it, keep her in prayer as she goes that she would make friends, be impacted spiritually, and have a wonderful time. (I've told her she has to keep at least a 30-yard distance between herself and any young men so we've covered THAT topic.)

And lastly, here is a video of Sarah reading a portion of a story she wrote for her Young Writer's Group.

Sarah Reading

____________________

Tuesday, November 10

A BIG HONOR

Recently I got an e-mail from Kelly, who has been a long time reader of Sarah Sarah's Spot. She wrote:

"My husband and I are expecting a baby girl on Valentine's Day, 2010. We are naming our little one Sarah Joy, in large part because of your inspirational Sarah. She embodies the spirit I want my little girl to have. I hope you don't mind."

Mind? Kelly, we are honored that you and your husband would want to do such a lovely thing. And Sarah was just as pleased as punch to hear the news!

____________________

A few days ago I mentioned the possibility of taking down the link to Smithellanous because it was skewing my blog traffic statistics a little bit.

However, I am going to leave it up a bit longer and see if I can find a way to sort through the statistics in a different way.

Thanks for your patience as I meander my muddled way through all this technical stuff!

__________________

Sarah is feeling a bit better; her naps have tapered off and there's a little more color in her cheeks.

Tomorrow she has an appointment at Duke for a hearing aid check. She's been having some issues with the hearing aids and hasn't been wearing them as much; we're hoping the audiologist at Duke can help her figure some stuff out to make them more "wearable and bearable."

That's all the news from Sarah's Spot for the moment! I'll be back again soon.

_________________________

Monday, November 9

Sarah's not feeling well today. She's taken naps off and on all weekend which is quite unusual for her. She is one of the non-nappiest kids I have ever met!

We're taking it a little slow on school today; I'm letting her work a while and then rest awhile.

She did manage to stay awake in Manteo though, for a photo shoot with You Know Who.

Enjoy your Monday and, as always, thanks so much for stopping by and being a part of the Smith Family!

________________

Friday, November 6

A TEENSY WEENSY CHANGE

Okay. Here's the deal.

Over at our other Smith site, Smithellaneous, I have hooked up with a stat tracking program that helps me know a little bit more about my visitor traffic.

I kind of freaked out a little when I first saw the stats because they listed "Caringbridge" over and over and over again. It was like every couple of minutes, I was being told a Caringbridge person had made a visit; I momentarily thought that maybe I was being stalked! (smile)

It finally occurred to my sort of thick brain that people were coming here to Sarah's site first and then clicking on the Smithellaneous link to get over to that site. (The stats didn't specify which CB site; they just said, Caring Bridge.)

And THAT is the reason why my stats are showing 90 per cent of my traffic being from Caringbridge.

So here's the deal:

If you are a frequent visitor to both sites, first of all, let me say thank you! I appreciate you being a loyal reader.

Secondly, I would truly appreciate it if you would take a second and bookmark Smithellaneous on your computer so that you can get to it without clicking on the link here.

I'll leave the link up for another couple of days and then take it down. I'll re-post it two or three times a month (for a couple days each time), so that any new visitors to Sarah's Site will know about Smithellaneous.

Making that change should give me a much clearer picture of my traffic statistics.

I truly appreciate your willingness to help me in this area.

Have a happy weekend! I'll be in touch soon.

_____________________

Thursday, November 5, 2009

NOVEMBER LIFE

Sarah and her sidekick

Helping me sort church music

Giggling over something in Manteo.

A Collage of Sarahnificance

____________

Trine and Mary had asked if I would post some of the older pictures of Sarah in front of the Cat scan picture.

Actually, when I posted this most recent one I thought to myself, "I should post some past pictures of Sarah."

Alas, I haven't been able to locate them. When I do, I will be sure to make a little Cat Scan Picture Line Up.

______________

And finally, a fun little (non hospital) Sarah Post from the archives.

SARAH AND AL

So there we were at dinner the other night, eating an Italian chicken dish that I had made in the crock-pot. Nathan is the kind of fella who loves steak sauce on just about anything (well, excluding chocolate cake) so he was slathering his chicken rather generously with ye olde, A1 steak sauce.

Sarah, of course, always wanting to be just like her big brother, intently observed his sauce-slathering technique for a few moments before piping up, �Hey, Nathan! Please pass me the AL.�

We stared at her in concerted consternation for a few seconds before it collectively dawned on us that she had looked at the label and read the number �one� as the letter "L.� Of course, we all got a pretty good chuckle out of Sarah pouring poor ol�, hapless Al all over her chicken.

She took our ribbing with her usual equanimity and good humor, rolling her eyes in happy exasperation at the entertainment she was providing for the Smith dinnertime crowd.

But her sweet smile faded rather suddenly when she took a bite of her chicken, the very chicken that she had so liberally crowned with Al. She made the worst face you have ever seen and muttered with great intensity, �I really prefer the Bullseye Brand.�

It suddenly occurred to me that the poor child had been thinking that �Al� was bar-b-q sauce! She was ever so disappointed by her first encounter with steak sauce, scraping off as much of the generously applied stuff as she could. She then valiantly ate every Al-tainted bite, all the while vowing to forever stay far, far away from any future contact with the offensive Al.

The next time you�re at a restaurant and reach for the A-1, I hope you�ll think of �Sarah and Al� and find an unexpected reason to smile!

Speaking of restaurants, our family had a very exciting experience last night: we went out to eat! (Yippee, yahoo, and oh boy!)

Having a son in braces, anticipating increasing insurance rates when he gets his driver�s license (which will happen any day), thinking about soon-to-arrive car payments for him, along with college bills, along with paying MY medical bills�well, eating out was the first �luxury� to be kicked out of our family budget.

But, joy of joys, someone had given me a restaurant gift card for my birthday and when I announced to my family last night I was going to take them out to dinner Steve said, �I thought you were going to save that for taking a friend out.�

I said, �You all ARE my friends!�

They all happily shuffled their feet and looked properly sheepish at the compliment.

So we all piled into the mini van and took ourselves off to the nearby Applebee�s with all the excitement of a class of first graders going off on a long anticipated field trip. There was much excited giggling and teasing and chatter as we pulled into the parking lot where Steve opened the car door for me and Nathan held open the restaurant door for Sarah and me. (Steve has trained him well.)

Steve and I sat on one side of the booth and Sarah and Nathan piled in on the other, eyes shining with the novelty of getting to eat out as a family. (When I say we don�t get out much, I am really NOT kidding.)

We just had the best time together, pondering the menu with great gravity, wresting the lemon slices from Sarah (who loves fresh lemon and tends to hoard it) and commenting on the music playing over the PA system. When you live in a musical family like ours, no song passes by unscathed; they are all mercilessly commented on and analyzed.

Here are just a few comments that anyone sitting near us would have overheard:

Listen to what the snare drum is doing on the chorus.

I wonder how many times those vocals were stacked?

That�s such a monotonous melody.

Ohhh, that song has a great hook!

That guy really has an unusual tone to his voice.

Listen to the intervals those background vocalists are singing; they would be very tough to hear!

This song has a very Beatle-esque feel; the drummer has a Ringo Starr influence.

Think that song is about 120 beats a minute? (Steve ended up timing it with his watch and proclaimed that it was.)

That second verse has an odd rhyme scheme.

This arrangement has sort of a European flavor.

That is a killer melody on the chorus.

Listen to how simple that drum line is.

I love the melody on the bridge.

And on and on we went, intently listening to the music, happily chomping our food (with Sarah clinging to her lemons and staying far, far away from Al) teasing each other, and talking a mile a minute.

At one point in the meal, Nathan said something or another and then followed it up with, �Well, that was a rhetorical question.�

I laid down my sandwich, leaned forward and thought, �Oh goody! A teaching moment!�

I said to Sarah, �Sweetie, do you know what a rhetorical question is?� (Thinking, of course, she wouldn�t know.)

She stopped chewing long enough to reply, �A question that doesn�t need an answer� and went back to her food.

I sat back, feeling slightly deflated, thinking, �What am I going to do when my children know all the answers to all the things I have any knowledge about and I have no one left to teach?�

Hmmm. Maybe I can just teach Al.

______________________

Tuesday, November 3
DUKE REVISITED

Here are a few more pictures from our Duke visit last week.

Eye exam in black and white

Every year that we go to Duke, we have a tradition of taking Sarah's picture in front of the "Cat Scan" artwork. It's fun to see how much she changes from year to year.

Oh the fun of having a plastic clothespin on your nose!

Pulmonary function testing from behind.

The elevator ride to the fourth floor.

Always nice when hospitals have fun artwork hanging around.

Not to mention fun colors. . .

. . . and fun fourteen year olds to hang around with.

______________________

Thursday, October 30

HOPE

I forgot to mention in yesterday's "post-Duke post" over at Smithellaneous that Sarah is now exempt from having to keep her annual appointment with her endocrinologist which was on the schedule for next Tuesday.

Dr. Driscoll basically said, "Why does she need to see an endocrinologist? All her levels are perfect!"

Were we going to argue with him? NOPE! Getting to take a pass on a doctor's appointment is a lovely thing!

And speaking of doctor's appointments, if you've ever gone to many of them, you know what I'm talking about when I allude to all the waiting that goes on.

Here are some various photos of Sarah in various waiting positions in various waiting areas in various Duke doctor's offices.

I will tell you one thing about the whole waiting scenario: If you don't have patience before your child gets cancer, you will definitely have patience afterwards. Either that, or you will go absolutely, stark raving mad!

The thing that helps to get Sarah and me through all the waiting is that we both love to watch people; a busy place like Duke is certainly a place packed full of the drama of peoples' lives.

Yesterday as we were walking (well, actually striding fast and purposefully because we were late) to another appointment, we saw a man and woman pushing their daughter through the hall in a wheel chair; she was pale and bald and about six years old.

When I looked at the worried, shell- shocked expressions on the parents' faces and I glimpsed the weary courage on the young girls' face, I was instantly overcome with memories and tears. It's amazing how those feelings never leave you and can stil be so fresh, even years down the road.

A little later, Sarah and I got on an elevator with a mom and her bald, mask-wearing daughter. (The girl was about Sarah's age.)

I asked, "Transplant?"

They both nodded.

I said, "Sarah was transplanted here at Duke seven years ago."

And that's all I needed to say.

They both gazed at Sarah's healthy, shining countenance like a starving person stares at food. I like to believe that they received hope and strength from the "nourishment" that their glance provided.

Because it's all about hope. Fighting cancer is all about hope. You can hear about dozens of children dying with the disease your child has but you can still dare to hope because, after all, there was a girl on an elevator at Duke who went on to survive!

And so hope goes on. It's gathered up and it's passed around and it's sent down the line and someone else sees someone else and hope is transferred and it grows and multiplies and it fills the hearts of people who so desperately need to hold on to it with both hands and with their whole hearts.

Did Sarah's sweet, hopeful presence yesterday in the halls of Duke do a little to spread a little hope to hearts in need of it?

I certainly hope so.

______________________

Monday, October 26, 2009

A PRETTY NIFTY DAUGHTER AND PRETTY NON BORING PARENTS

We had fun at the beach on Saturday although Snowy wasn't "overly ferocious" with the ocean. When you weigh less than six pounds, something as large as the ocean can be a bit intimidating! But he did at least try to "stare it down." Good ol' Snowy.

And may I also add, good ol' Sarah? I just have to take a moment to brag on our daughter and what a good attitude she has kept through these past eleven months of upheaval, transition, and downright loneliness.

She no longer attends the school she went to for five years, she no longer goes to the church she was a part of for many years, and she hasn't yet moved to a new school or (full time) church in order to fill some of those holes.

Every weekend, she packs up all her belongings and spends her time traveling and unpacking and touching base briefly with people she won't see again for another week. She has few friends in her life and few social outings.

I told her the other day, "Sarah, I'm sorry you have to hang out with Daddy and me all the time; it must get kind of boring."

She looked at me like I had grown a third eyeball in the middle of my forehead, as though she couldn't comprehend what I was saying.

She said, "Oh no! You and Dad aren't boring to hang out with. You're interesting!"

Seriously, what a great compliment from a 14-year old. We are interesting!

One thing I have been very grateful for in the midst of this veritable "relationship desert," is that every Wednesday night, she gets to attend a local church with a young lady who used to go to her school.

The youth group is very small, but that's just what Sarah needs right now; a few people to hang out with and feel like she's a part of something.

And the cool thing is that the church is pastored by Rev. Randall Woodard, a (former) kid who used to be a part of Steve's and I my youth group when we were youth pastors here in Smithfield many years ago. And now, Randall's son is in youth group with our daughter!

Here's Sarah, just arriving home from one of the meetings.

We are ever so thankful for that special group, especially at this difficult juncture in our lives.

We are also grateful that in this time of upheaval, our little Snowy is still with us. When it came down to the tough choice last week of either spending $2800 for surgery or putting him to sleep, Steve and I just couldn't stand the thought of Sarah moving to a new church, house, community, and town without her "little brother" in tow. He has been a constant in her life since she was four years old and to go through this transition without him would have been very difficult.

With all the changes ahead, we're thankful that our family still contains the "constants" of a healthy dog, a nifty daughter and pretty non-boring parents.

Life is good!

________________________

Thursday, October 22, 2009

A TRIP TO DUKE AND MEMORIES

I got an e-mail from Duke this week with Sarah's schedule for her visit next week.

Dear Mr. and Mrs. Smith,

Below are Sarah�s studies for her seven year, post Stem Cell Transplant scheduled for Thursday, October 29th, 2009. Please let me know if there are any questions. Please be sure to bring a copy of Sarah�s immunization record for our files.

Due to her MUGA study Sarah will need to be NPO after 6:30am

8:00am Please check in on the 4th floor of the CHC. Sarah will be weighed, measured, vital signs and labs drawn. Be sure to tell them you have an appointment at 8:45am

8:45am Please check in at the eye center located beside Duke North. Sarah will have an eye exam with Dr. Wallace at 9am.

10:15am Please check in clinic 2E in Duke South. Sarah is scheduled for a MUGA at this time. They are aware of your appointment at 9am.

12:45pm Please check into clinic 1-I in Duke South. Sarah is scheduled for a hearing test.

2:15pm Please check in on the 2nd floor of the CHC. Sarah is scheduled for her pulmonary function testing at this time.

Please return to the 4th floor of the CHC following the studies above. Sarah will be seen by a nurse practitioner and Dr. Driscoll.

We look forward to seeing you next week.

Sincerely,

Rebecca Lewis
Project Coordinator
Clinical Facilitator

The following Tuesday, Sarah is scheduled for her annual appointment with her endocrinologist; I'm hoping that if things are still looking good this time around, she won't need to see someone every year.

Every time these "big" appointments come up, I can't help but think back to the active treatment days and all the stories and experiences and tears and laughter that formed the fabric of our existence back then.

I came across one of those stories last night and wanted to re-post it.

LOVE WAS IN THE ROOM

After Sarah's recent surgery, she woke me up from my cot beside her to tell me that she had to go to the bathroom. I got up and tried to help her with her bedpan but she was in such pain that I couldn�t move her and adjust the bedpan at the same time. I finally rang for assistance.

One of the wonderfully patient nursing assistants appeared immediately and stood on the opposite side of the bed so she could help me get a groaning and perspiring Sarah positioned on the bedpan. I don�t know why such a simple act would be so indelibly burned into my memory but I will never forget standing there beside my suffering daughter, looking down at her nearly naked, scarred, bruised body, and seeing her stripped of the dignity and innocence of her childhood. Since she didn�t possess the strength to walk to the privacy of the bathroom, she was having to attend to one of the most private of human needs with an audience around her.

She was powerless, helpless, dependent, and miserable�there were no sweet smiles, no rosy cheeks, no golden curls. There was only the sight of a small child too weary for the battle and a weeping mother who could do nothing at all to help except to kiss the skin on the top of her head and whisper the comforting words that only a broken hearted parent knows how to say.

It seemed to me that the whole world faded away that night and all that remained was the nursing assistant and me, bound together in the intimate, sacred task of ministering to �the least of these.�

I loved my daughter more at that moment than I ever had before�far more than I did when she was happy and healthy and gorgeous. I loved her with a deeper love than I ever knew could exist for another human being and I was honored to be standing by her in the middle of the night, being a load lifter and an armor-bearer for my bald, beloved solider.

I have gazed into the face of sorrow and pain. I have heard a little girl�s whimpers of anxiety and discomfort. I have seen inside the compassionate heart of a medical helper. I have seen all of life boiled down to a few holy moments in the middle of the night--moments that were holy because even in the midst of great suffering, peace was in the air and love was in the room.

_________________

And now, all these years later, love is STILL in the room. The room has changed, thankfully, from a hospital room to a bedroom. The nursing assistant has been replaced by a dog with a cone on his head. But love is still right there in the room.

A DOG. A DAUGHTER. LOVE

October 19, 2009

During these past few days which have been taken up with Snowy's surgery, signing forms, paying vet bills, and getting him to and from the hospital, Steve and I told Sarah that she was getting a teeny taste of we went through when she was getting ready for her own surgeries and her bone marrow transplant.

She's never had someone (and Snowy IS a "someone," even though he's a dog) who lives close to her go through a medical crisis and the tears she shed and the worry she experienced over Snowy's condition helped her to understand a little bit more about what we faced with her.

Steve and I were reminsicing with her about sitting in a room with a doctor and signing a sheet giving him our permission to give her "lethal doses of chemo."

And yes, that is exactly what the form said.

I also remember a nurse talking with us about the side effects of the transplant and telling us that Sarah would most probably be infertible because of it; I remember tears welling up in my eyes as I signed yet another horrible form, giving people permission to put our daughter through one of the worst medical procedures imaginable.

And while I completely agree that having a dog go through surgery is not anywhere near having a daughter go through a bone marrow transplant, in a small way, the events of this past weekend helped Sarah to understand that when a loved one goes through something hard, it makes your heart hurt. Really, really bad.

And we all discovered again, reminiscing about the past and dealing with the present, that love is the bottom line in all of these things.

Whether it's a daughter with cancer or a dog with kidney stones, the common thread in those stories is the love that stitches together broken hearts and worried minds and leaves a tapestry of peace in place of all the sorrow and the anxiety.

We're thankful that Sarah is alive and healthy. We're thankful that Snowy is back home with us. We're thankful that love makes tough things bearable and we're thankful that it helps heals the wounds that the pain of life can leave behind.

I'm thankful for a daughter, a dog, and love.

Here's a video someone sent that puts the "love equation" in a beautiful way.

___________________________

October 16, 2009

HOMESCHOOL ON AN ISLAND

When we were in Manteo last weekend, Sarah had some school work to finish up. And where better to work than on the front porch of our cottage, bolstered by breezes from the sea?

Of course Snowy was there to stand guard and to protect her from any Evil Island Creatures that may have been lurking on the lawn.

A front porch. Sunshine. A rocking chair. And a girl's best friend nearby.

School never had it so good.

___________________________

October 13, 2009

(Note: I originally wrote the title as "Sarah's FINANCE." Maybe it was a Freudian slip in the hopes that her FIANCE would bring her a lot of FINANCES! Thanks to those of you who caught the typo!)

SARAH'S FIANCE

Yes, you read that right. I DID say, "fiance."

Now I know that I have said in the past that Sarah can't date until she's at least twenty-five, and can't marry until she's forty. Most importantly, any guy that even thinks about taking her out on a date has to undergo an exhaustive eight-hour interview with both Steve and me.

But hey. That was then. This is now.

And having said that, may I now present to you the fella that Sarah has her sights set on.

Is he a swashbuckling sailor, or what?

Over the past year or so, Sarah has said several times that she wants to marry a man with an English accent, since she is entranced by all things English.

However, after seeing this fella on Saturday and listening to him talk in his delightful IRISH accent, she thought that maybe she could expand her accent-esque horizons to include an Irish brogue.

And where did she come across this nice young Irishman?

He was a part of the Elizabethan Tymes Faire that she and Steve attended in Manteo last Saturday.

After he had played his part in the drama and talked with the visitors (including Steve and Sarah), Steve said to Sarah, "He's sure a cool guy."

And Sarah agreed with him whole heartedly because she was already thinking that very same thing. (smile)

So the two of them came back to our little borrowed cottage full of stories about the drama, the costumes, the falconer, and . . . The Irishman!

Whom Sarah has hereby selected to be the future Mr. Sarah Smith!

Anyway, we've gotten a good chuckle out this fella all weekend since Sarah has been so taken with him. I think it was the accent that really put him over the top. As I said, Sarah absolutely adores accents.

But in the meantime, before their nuptials take place, Sarah really needs to finish High School, and go to college, and have about thirty more birthdays.

And then, just maybe, we'll work on setting up our 8-hour, pre-dating interview with the Irishman.

Might I just add that any fella who ends up marrying Sarah will get an absolute treasure for a wife.

And of course, he'll get a mighty fine mother-in-law as well.

(Did I just say that out loud?)

_________________________

October 8, 2009

SCHOOL, DUKE, AND CELL PHONES

Sarah is down the hall in her room, hard at work on her homeschool assignments for the day. She is very diligent in her work and needs very few prompts from me to "git 'er done!"

I have assigned Steve to be her Physical Education teacher and so that's been fun to watch the two of them do PE together. A week or two ago, they went out and shot some hoops and then yesterday, Steve did some "time trials" with Sarah on her bike.

This is Steve's description of the event as he wrote in on Facebook.

"Since our daughter, Sarah, is home schooled, I have been designated as the PE instructor. Today I had her ride her bike up and down the street and timed her. I sat by the curb in a lawn chair and sipped my tea as she rode. I did isometric exercises by bringing my teacup to my mouth."

Doesn't that sound like the world's best PE teacher? (smile) At least Sarah is getting plenty of exercise, even if her teacher isn't!

Last week, after the three of us had gone out to rake pine straw (a major work out, let me tell you) she came inside and collapsed on our bed with Snowy. (We were in the process of changing the sheets which is why the bed is sort of duo toned.)

Earlier that day, she had just purchased her first "real" cell phone after saving up for a long time. So we had to have some "showing off the phone" pictures.

On the last Thursday of this month, she is scheduled for a full day of appointments at Duke for her annual post-transplant studies.

Usually she does those in December, but we've moved it up a little so we don't have to make the 4-hour drive from Manteo to Duke in December.

We continue to be so thrilled and thankful for the great health that she's enjoyed.

I hear of so few long term survivors out there; every month and year that passes that Sarah remains cancer free just give us more and more reasons to be thankful.

However, our thankfulness was tempered recently by sadness as we learned of a Neuroblastoma friend who has relapsed.

Erik was diagnosed at age 6 (same age as Sarah was) back in 1991. In 2005, he relapsed at the age of twenty, after thirteen years of remission. He got back into remission but has recently relapsed again and things are not looking hopeful.

His mom and I have emailed back and forth some over the past few years and I have been amazed by the strength, the faith, and the sense of humor that this family continues to exhibit.

When you have a moment, please stop by his site and leave a note of encouragement. He's one of just two or three people I've heard of who have survived beyond teenhood; to know that he is not doing well is sad on so many levels.

Erik just gives me another reason to be more grateful than ever for each day I get to spend with my precious Princess Groovy Chick.

Who is down the hall. And doing schoolwork. And riding bikes. And raking lawns. And buying cell phones. And snuggling with her dog.

Who is alive.

______________________

October 5, 2009

REMEMBERING ANNE FRANK

A couple weeks ago, Sarah and I attended Diary of a Young Girl: The Story of Anne Frank. It was a play put on by our local theater group here in Smithfield and Sarah and I were pleasantly surprised by the quality of the production and the excellence of the acting.

Sarah hasn't been to many live theater performances and so she was especially entranced with it all from the first moment to the last.

In the last scene of the play, after everyone who had been hiding together had been arrested and taken to the concentration camps, Mr. Frank (the sole survivor) returned to the stage alone. In a reminiscing monologue, he told what had happened to each of the people who had been with him in the secret annex where they had spent over two years in hiding. He finished by reporting that Anne had died of typhus in the concentration camp, just a few days before the people in the camps were liberated.

Just as he finished telling about all the heartless, cruel, incomprehensible ways he and his family had been treated, the screen behind him lit up with these words taken from from Anne's diary, "Despite everything, I really believe that people are good at heart."

And that was the end of the play.

Sarah and I were seated right by the exit so when the play ended, we were able to walk straight outside into the cool September air and avoid the chatter and rustling of the rest of the crowd. I wasn't sure how Sarah was feeling, but I was certainly choked up over what I had just seen and heard.

As we moved silently down the sidewalk, we began to walk arm in arm; it was then that I saw the tears in Sarah's eyes.

Neither one of us was able to say a word until we finally got near our car and even then, the poignancy of the story stayed with us. As writers and word lovers, we were both incredibly moved by the power of Anne's words. We were impacted by her story and humbled by the courage and strength she and her family showed in the face of such incredible hardship.

And now, ever since seeing the play, Sarah and I have started saying a new line, "Remember Anne Frank."

If some small thing annoys us, or we get frustrated by some aspect of life that isn't all that important we just say, "Remember Anne Frank."

And it reminds us of how blessed we are to live lives of freedom, to live lives of plenty, to live lives where we are not in fear of being discovered by an evil enemy every moment of every day.

This week, you may have some "Remember Anne Frank" moments in your own life. If you do, please know that Sarah and I will be remembering (and being thankful) right along with you.

___________________________

October 2, 2009

Sometimes I like to look at pictures like these . . .

. . . so that I can more fully appreciate pictures like these.

May the moments of Autumn give you give many reasons to dance.

___________________________

September 29, 2009

These are a couple pictures of our semi-organized home schooling supplies. It's amazing how much time and energy it takes just to get the basic stuff figured out and in its rightful place.

We're off to a good start, though, and my Star Student has been very diligent in getting her work done each day. So far, she's worked at home, at the hotel, and in the car--it's a good thing she's had past experience in doing school on the move!

I am so happy that we made the decision to home school this year, not just because of helping her to get caught up a bit, but also because of all the coming and going we'll be doing during these months of getting settled into Manteo.

And speaking of that great town, I'll close out with a lovely picture of a lovely girl in lovely Manteo.

______________________________

September 24, 2009

Of Tales and Tomes

I know I've mentioned five billion times before how much Sarah loves books. In fact, if you've been hanging out at Sarah's Spot for any length of time, you will doubtless agree that you have heard that said over and over.

But you know what?

I got to thinking that maybe you all just thought I was telling Sarah Fibs and that maybe Sarah actually loathes reading and she really has a HATE affair with books and she doesn't enjoy having them in her room, and if one even comes close to her, she breaks out in hives.

And so on. And also, so forth.

So in order to lay those possibly pesky rumors to rest, I took the liberty of taking a few photos of Sarah's room.

First, we have the Official C.S. Lewis Exhibit. I love it that she loves these books by such a great (and creative) thinker.

Here is the everpresent stack on the dresser.

And here is the ever presenter stack on her night table. (I call it "ever presenter" because it is closer at hand for her to read when she's in bed.)

The books she's already packed to be moved to the new house.

And finally, the Book Woman herself, posing in front of yet another collection of tales and tomes.

To live in a house inhabited with loving family and wonderful books is a great blessing, indeed.

____________________________

Monday, September 21, 2009

Last week, Sarah got a belated birthday box in the mail from Jodi, a longtime website friend from Chicago.

Although Jodi deals with many serious medical issues, she still took the time and trouble to shop for fifteen gifts (fourteen for each year, one for good luck) and individually wrap each one.

Sarah had the best time opening them and discovering the little surprises in each one. The "crowning jewel" of the collection was a gift card to Barnes and Noble. It just doesn't get much better than that for Princess Groovy Chick!

Of course, there's not much that goes on in this house that escapes Snowy's attention. While Sarah was happily unwrapping, Snowy was right there beside her to offer his "assistance."

He's good like that.

Thanks, Jodi, for brightening Sarah's day with your thoughtfulness.

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