History

June 10, 2011

Tuesday marked a big day in the life of a certain Groovy Chick; on Tuesday, Sarah Smith officially became a sophomore in High School!

Many of you who read this blog can remember when she was diagnosed as a six-year old. And now she's a sophomore? And will turn sixteen in 2 1/2 months?

However did that happen?

Also, to make me feel even older, I just did a little calendar math and realized that in twenty-six short months, my youngest child will be an ADULT!

A youngest child who wasn't even supposed to live to be ten--SHE will be an adult.

That is happy, happy news--even if it does mean that I'm growing a bit older right along with her.

To celebrate her momentous day, Steve took her out for dinner and a Putt Putt date Tuesday night.

Here they are, leaving the house.

He beat her at Putt Putt but she got the only hole-in-one, so they both came home happy.

So proud of our girl! (Who by the way, made the A/B Honor Roll for the year.)

___________________________________

Thursday, May 26, 2011

First of all, thanks to all of you who stopped by here during the Big Ninth Anniversary Celebration and left such sweet notes in the guest book.

We are blessed to have so many people who care about Princess Groovy Chick; thanks for taking time to rejoice over her Happy Day with her!

Unfortunately, yesterday did not at all fit under the Happy Day description. Sarah called me from school about 1 pm; she was crying and said she was having a lot of pain in her left side.

Thankfully the church (where I work) is only about half a block away from her school so I was there within just a minute or two of her call. She was still crying when the school nurse brought her down to the office and said it hurt when she twisted her torso at all or took any deep breaths.

I took her home, sat her on the couch and went up to her room to get some comfy clothes for her. (Old sweatpants and an over sized t-shirt are the best comfy clothes in the world.)

Snowy, of course, was immediately on High Alert. He knew that his inimitable, invaluable, incredibly inspiring nursing skills were needed and he was Johnny on the spot.

Every girl should have such an attentive attendant.

Sarah stayed on the couch most of the afternoon and evening; there were a few more spells of pain and a few more tears but by bedtime she seemed to be feeling better.

This morning she got up and said she was still aware of a little discomfort but she was going to try going to school.

Snowy sat with his patient on the couch for a few minutes to make a professional assessment and be sure she was doing okay before accompanying her on the Daily School Run. (Which is the highlight of his life.)

In happier news, last week Sarah was honored with a certificate and a $50 scholastic award (3rd highest GPA in 9th grade) at a banquet at a fancy restaurant in the area.

Steve and I were especially glad about this award because Sarah has spent so much of her life watching Nathan be called forward in numerous ceremonies and receive all sorts of scholastic awards and plaudits. We figured that with her learning issues (due to her cancer treatment), that sort of thing would never be a part of her life.

What a pleasant surprise to find out just how well she is doing in her studies; we are grateful that she is finding ways to overcome the challenges she faces. Cancer kids seem to be especially good at that--they are overcomers, in every sense of the word.

We're proud of our girl!

Well, that's all the news for today. Snowy says to tell everyone that as much as he loves nursing his sister back to health, he is exhausted by his extended nursing duty and will probably have to sleep all day just to recover.

(Of course, he sleeps all day anyway but I would never embarrass him by mentioning that fact . . .)

_____________________________

Tuesday, May 17, 2011

Nine years ago today, Sarah was diagnosed with Stage IV, high risk Neuroblastoma. All of the odds were stacked against her--her age, the aggressive type of Neuroblastoma it was, and how far advanced the cancer was at diagnosis.

The chances of her surviving a year--let alone NINE years--were almost laughable.

And yet . . .against all odds, against all predictions, against any sort of common sense or hope--she is still here.

She is very much still here. Very much alive.

However, as happy as our family is to be eyewitnesses to a miracle, we can never celebrate a day like this without being fully aware of the thousands of Neuroblastoma kids who did not make it. Girls who were Sarah's age. Boys who were just a few months old. Teenagers and young adults. They left behind people whose love for them will never fade.

And I remember those left behind loved ones today, even as I give thanks for the child who is still here.

To celebrate this day, I am going to post a few favorite photos from the past nine years so we can share this special celebration together.

Shall we get started?

This is what Sarah's hair looked like just before it fell out.

At Disney, a couple days before the bone marrow transplant.

Unexpectedly meeting up with a North Carolinian cancer buddy at Disney.

Back at the hospital with the same buddy.

Playing checkers with one of her favorite hospital people, Tracy. (Tracy is now a high risk obstetrician.)

Always looking up . . .

Ready for one of her innumerable scans.

A visit by a best friend always made things better.

One of several surgeries. It never got any easier to see her in that recovery room.

Her first birthday after diagnosis. It's always hard for me to believe just how pale and sickly she looked.

A hospital bed never stood between the artiste and her work!

One of my favorite shots ever.

The face of courage.

Waiting between appointments at Duke. (We've done a lot of waiting in nine years!)

Sometimes though, Sarah got tired of waiting and took matters into her own hands.

She was delighted when her cousin, Caleb, came to visit. The two of them are still good buds.

My kingdom for a nap . . .

Love this picture.

After another surgery.

Snuggled in with a new friend at the Ronald McDonald House.

Snowy was the world's best nurse.

One of her doctors having a tough conversation with her about the upcoming treatment.

Wearing the famous "VG Cape." (VG stood for Vomit Girl--the super hero of Sarah's design.)

Love her face here.

Sarah got a chance to pose with you-know-who at Victory Junction Gang Camp.

School still had to be done, even in the middle of treatment.

Examining a puddle.

She always got such a kick out of looking at the "Cat Scan" picture.

Getting ready to walk through the doors of the transplant unit; I love the calm, strong look on her face.

This photo never fails to move me . . . and bring back memories of those horrible, painful, nighmarish long days on the transplant floor.

So many machines hooked up to her small body.

Such a study in contrasts--happy painting, miserable face.

Boarding a corporate jet to fly to Sloan Kettering in NYC.

The first day her hair was long enough for barrettes.

When she relapsed in 2006, she was put on an oral chemo that made her very uncomfortable.

Because of Sarah's treatment (balance and strength issues), it took her longer than other kids to learn to ride her bike without training wheels. When she finally learned, it was a huge, huge moment.

Of course, once you've had cancer, there are always tests and procedures that continue. This was taken following a painful nerve conduction test.

And yet another scan.

As I've looked through all these pictures, both the happy ones and the sad ones, they all point toward one final picture, one final message.

Wednesday, May 11

Well, I just have to say that it is so wonderful of you all to keep stopping by and keep signing the guest book, even though I have been a very tardy post-er as of late.

It's so fun to see familiar names crop up in the guestbook over and over and to think about how long some of you have been following our story.

If you can believe it, May 17 will mark nine years since diagnosis! NINE years.

And I know that some of you have been with us since the very beginning, which is so amazing to me.

Our family has been blessed with the very best folks on the planet to take this journey with and we just can't express to you how much we appreciate the old friends (as well as the new ones) who have joined our family through this website.

I promise a Sarah Post soon--with Nathan at home for a week, my time is sort of divided but I do stop by here at least once a day to check the guest book.

More later. . .

____________________________

Wednesday, April 20, 2011

WORDS AND SUCH.

Last night, Sarah and I were on the big bed in the master bedroom reading our latest book together--Jeremy Fink and The Meaning of Life. (She always reads the first half of the chapter out loud and I--you guessed it--always read the second half.)

Whenever we finish reading, we always lie on the bed and talk for a while about this and that. Last night, in the middle of our "this and that-ing" I happened to glance at the last page of the book where other books for teens were being advertised.

To my amazement, within the space of about thirty seconds of reading those descriptions, I came across two words I didn't know.

What? I'm reading descriptions of books written for kids and I, an inveterate verbivore, don't know what they mean? How embarrassing is that?

Sarah and I pondered the words for awhile, dissecting whether they were Latin derived, and what the particular prefixes might mean. She was actually ahead of me on one of the words and at least knew that it was a geometric shape.

Finally, we gave up and put our tired, word-solving brains to bed.

This morning when I got up, there was an e-mail waiting for me from my equally inveterately verbivoric daughter.
It was entitled "Links!" and it contained the following information, diligently researched and speedily delivered.

So. If you're interested in what synesthesia is? If you want to know what shape a tetrahedron is? Look no further!

Synesthesia

Tetrahedron

Also last night when we were talking about the tetr- prefix, that reminded me of my (only) favorite electronic game, Tetris. After I had wondered aloud what that word meant, my able assistant sent me that info this morning, too.

Tetris

(While we're on the subject of Tetris, might I just add that I have scored over 200,000 points on that game? I used to play it a whole lot until it became too addictive; now I don't go near it all because I can't. Put. It. Down.)

Okay. Moving right along.

Since I'm writing about words today, I thought I'd mention that Sarah recently told Steve and I that between the two (related) novels she's been working on for four years, she has written 550,000 words!

Yes. You read that right. 550,000 words.

And since she is, after all, her mother's daughter, she has probably edited each of those 550,000 words ten times.

How lovely it is to live in a house full of book and word lovers. And when I think that the joy of Sarah's company could have been taken away from us nine years ago when she was diagnosed with Neuroblastoma, I am especially grateful for each conversation we get to have.

She is truly a treasure.

__________________________________

Sunday, April 10

Last Friday, Sarah and I met with her guidance counselor to choose her courses for her sophomore year. (And no, I can't believe I am typing "sophomore" in connection with my (little, tiny, baby) girl.

Who's not so little or tiny any more. Sigh.

Anyway, before we got down to the business of choosing courses, the guidance counselor let me know what a joy Sarah was to have at the school; the teachers all seem to be quite entranced with her. (I can't imagine why.)

And then the counselor said, "Let's take a look at Sarah's GPA and her academic ranking so far this year."

To both Sarah's and my astonishment, she is third out of her class of 127!

Now that's a great accomplishment for anyone, but for someone who has certifiable learning disabilities? It is downright amazing.

Let me just say that by the time I left that office, I was grinnin' like a fool. It's such a joy to know that Sarah is a blessing at school and such a relief to be reminded that, yes, she CAN handle High School and will be just fine going on to college.

There was a time back when she first started having her neuropsych testing that some of her levels were worrisome enough to make us wonder if she would have huge academic struggles.

But third in her class? Seems like she's getting along just fine!

We are incredibly proud of her hard work and also thankful that she is overcoming her disabilities and pursuing excellence.

Have I mentioned that she is my absolutely favorite daughter?

Well, she is.

______________________________

Thursday, March 24, 2011

Here is another entry from the journal I kept during Sarah's cancer treatment--posted as a reminder and as an encouragement.

JANUARY 12, 2003

I'm writing this two days after Sarah's transplant. The walls of my world have closed in to envelop me in a very small space permeated with sickness and fear and the shadow of death. Even now there are things going on in Sarah's body that are dangerous: low white count, 106 degree fever, mysterious infection, and no immune system.

Each minute of her life is a gift and not to be taken for granted. Each raggedy breath I hear from across the room is as sweet as an angel's breath; in fact, it is an angel's breath.

She managed a few small smiles today but mostly it seemed like smiling was way too much work. All I could see on her face were those luminous, intense eyes, meeting and holding mine, drawing strength and hope from my very being.

She is so small, so frail, so pitiful. So strong, so courageous, so brave. A world of contradictions battling in a cancer-weary body.

She is my princess, flesh of my flesh. I cradled her in my body for 8 months and protected her. Now there is no protecting her; all I can do is be there as the tides of pain and fear wash over her. All I can do is be her mother.

I can only hope it is enough.

Sarah then:

Sarah now:

I never get tired of seeing the change.

______________________________

Wednesday, March 16, 2011

I mentioned in the last post that Sarah and I were headed out to the beach to take some pictures.

Here are a few photos from that session, some of which I edited in picnik.com. If you haven't tried this website yet, let me just say this: It is very fun. It is very addictive. And many of the features are very free. (Very free is my very favorite price.)

When Sarah's not strolling the beach for her picture-taking mother, she's hard at work on her studies. In fact, on her most recent report card, she was on the A/B Honor Roll.

Every time I see such good grades from her, I am thankfully amazed that she is rising above her cancer-caused learning disabilities and doing so well in school.

She talks frequently of wanting to go to college which frankly, in the past, I wasn't sure if that was going to be a doable goal for her. But she's a determined gal and has every chance of achieving those dreams.

For many years now, she has also said she wants to be an author; however, she is realistic enough to realize that she can't make any sort of living right off the bat in that field.

So now she's also thinking of owning a book store as her day job.

Sarah and a bookstore--what a perfect fit!

And as a bookstore owner, when her first book comes out, she can give it lots and lots of shelf space in her store. And YOU will all be invited to come there and shop!

Sounds like a perfect plan to me!

________________________________

Saturday, March 12, 2011

Today is a sunny Saturday and, since Steve is out of town, Sarah and I are going on a mother/daughter trek to the ocean. (Well, when the ocean is only ten minutes away, maybe "trek" is not the right word.)

We have lived in Manteo for fifteen months now I think I have only laid eyes on the ocean three or four times. Terrible, I know.

But on this first sunny Saturday of spring, I figured we'd better take advantage of it and do some ocean side walking and ocean side picture taking.

Because not only do we believe in seizing the day, we believe in seizing the Saturday!

Here are a few pictures from when we first moved here and Sarah, Steve and Snowy took their trek to the ocean.

I'll close with something Sarah recently wrote on Facebook that made me smile:

"It is my strong conviction that the right shift key on a keyboard's sole reason for existence is so that a typist who is eating a Rice Krispie Treat in her left hand can perform a shortcut using a letter on the right side of the keyboard without having to put down said Rice Krispie Treat to use the left shift key as she normally would have used if she had not been eating said Rice Krispie Treat."

Did you get that?

Sarah is like her mother--she loves writing in fun and humorous circles.

Love her and love her writing.

_____________________________

Saturday, February 26, 2011

SECOND CHANCES

When I take Sarah to school every morning, I usually have to wait a few minutes to get out of the parking lot. This gives me the chance to study the faces of the other kids and parents who are going by me on their way into the school.

As they pass, I notice various emotions on various faces: anger, contentment, distraction, joy. I might see signs of happy conversation or I might pick up on the stress of sullen silences.

And I wonder: do those two people in that car love each other? Like each other? Do they get along? Do they wish they didn�t have to be sitting in that car together? Do they treasure their moments?

And I wonder what things were like before they all left the house that morning. I wonder what was on the launching pad that propelled those kids into their day. Hugs? Yelling? Prayers? Peaceful moments? Ugliness? Laughter?

I love watching people and I love watching the way people interact with each other. And ever since Sarah was diagnosed with cancer in 2002, I love even more the chance to notice the interactions and the dynamics between parents and children. When I see parents outside the High School who look stressed or bored or angry in the presence of their child, I want to gently remind them that there are a lot of parents who would give just about anything to be dropping a kid off at school.

There are a whole lot of parents who sit at their windows at 7:47 on a Monday morning and watch kids go by on their way to school. These parents weep and wish that things could have been different; they weep and wonder why their child was taken. They weep and wipe away tears of a child lost�of a whole childhood lost.

And they wish that they were the ones behind the wheel of that car, that they were the ones with the precious privilege of dropping a living, breathing child off at school.

Every single time I pull up to the curb of the school and let Sarah out of our car, I am overwhelmed with gratitude that I am one of the blessed cancer parents who has made it this far in the journey. Cancer didn�t take my child.

But my happiness in that knowledge is always severely tempered by knowing that cancer did take so many other children. And I realize anew that I can never, ever take my daughter, or our relationship, for granted.

I realize that when I kiss her goodnight at bedtime, when I put her dirty socks in the washer, when I cook her oatmeal for breakfast, when I drop her off at school that I am blessed. I am beyond blessed. I am blessed beyond words.

I have a daughter who never should have survived long enough to even go to High School. I have a daughter who was given a second chance.

I�ve also been given a second chance. And my prayer and hope is that in my second chance to be a mother to this miraculous, marvelous daughter, I will not mess it up. I will not squander the moments, or the memories, or the miracle of life itself.

Wednesday, February 16

Note: If you are anywhere within the listening are of MIX 101.5, they are having their annual radio-thon to benefit the kids of Duke.

A couple years ago, Sarah, Steve and I were interviewed during the radio-thon week and got to tell our story.

The station is doing a wonderful thing and helping a lot of great kids who will be passing through the Duke doors in the months and years to come.

Kids like this one!

_______________

Monday, February 14, 2011

Happy Valentine's Day from Princess Groovy Chick and her entire family!

To start off with, I'm going to post a few favorite pictures from Sarah's treatment days. I know that red is a traditional Valentine's Day color but I think pink can also be sort of Valentine-ish as well. So today, I'm featuring a few photos of Sarah that all feature the color pink!

Hooray for Sarah! Hurray for pink!

>

In other news . . .

The following letter is a bit lengthy but I wanted to share with you a research project that this very blog you're reading (at this very minute!) has been a part of. Also, the comments you've left over the years have been studied, as well!

I've been so amazed when I've heard from different ones of you who've said that you've read every single entry on Sarah's blog. That is NOT a job for the faint of heart since I can tend to be a bit long winded.

With that in mind, I was especially astonished by what the writer of this letter did in regards to reading the blog! I think you'll be amazed, too!

I'm so proud that Sarah's story will be used to help other cancer kids down the road.

February 11, 2011

Dear Becky,

At long last, I am happy to share the findings of the nursing study of your blog about your child�s cancer. I began reading your writing in the Fall of 2009 and completed the analysis in December 2010. The research was meant to explore your blog and others for important elements of the cancer care your child received and to attend in a meaningful way to your written expression of the experience.

Allow me to tell you how I accomplished the research. I first read each of nine blogs from beginning to end (the end being the date before you consented to include your blog in 2009). I read 9 blogs created by parents of children with neuroblastoma and 5 blogs created by parents of children with acute lymphoblastic leukemia. I first transferred the text from the website to Microsoft Word documents to maintain the integrity of the writing and to ensure the privacy and security of the data (your stories).

I read each blog once without taking notes to get to know you and your story. After the first reading, I returned to the beginning, read the stories a second time and took notes on what I found to be significant to nurses and other healthcare providers.

I then returned to the beginning to organize these notes into groups of themes and to name some of the purposes for blogging that you expressed. The last analysis I performed was on the comments you received in response to your entries. I read through these, then took notes and organized ideas in the same way I had with your writing.
I learned a great deal from reading your work and the comments you received.

Since life changed so much over the course of your child�s cancer treatment, I marked time in three segments: the diagnosis, treatment and off-treatment phases. In each phase, I noticed these themes as common to many of the stories I read. Here are the elements of your stories I found most important.

o Uncertainty/uncertainty management
o Stress/stress management
o Burdens/Gifts
o Change/constants
o Public/private lives

For example, the uncertainty that came during the time when your child was being diagnosed had very different qualities than later, during treatment, when you may have felt a little more under control yet still lived every day with the uncertainty of the cancer�s return. Stories about managing the uncertainty and about managing stress were very instructive.

I found one common denominator in all the blogs that represented the stories of alternating negative and positive experiences. This became the title of the dissertation: �The balance we seek.� As I read and reread the blogs, this seemed to be the object of greatest desire. The effort toward balance between the five themes listed and their counterparts was one of the elements that jumped off the pages.

For example, during some of the burdens experienced, gifts were seemed to be found. Many bloggers described learning of an inner strength they didn�t know existed until their child faced not just the illness but the discomforts and annoyances that came with its treatment. The good balanced the bad again and again.

One of the most significant burdens expressed by each blogger was what has been referred to by nurse researchers as �surplus suffering.� It has not been researched extensively, but I believe it needs further study and a plan of action. Surplus suffering, to me, is the suffering experienced in addition to that which comes with the illness and its treatment. Surplus suffering can be caused by family, friends, providers and the healthcare system.

Even the bloggers seemingly satisfied with the treatment shared stories of friends or family who said unhelpful, even detrimental things; staff that treated family members impolitely or worse; and a healthcare system seemingly designed to confuse, aggravate and add injury to families already experiencing pain. Insurance company treatment is a category of surplus suffering that stood far above all else and should be researched in depth.

The purposes for writing were clear whether the blogger stated them outright or not. For some, the blog was a place to express things that were difficult or impossible to say in person. Writing seemed to be a way to reflect on events, feelings and changes over time. All the blogs seemed to have started as a means to keep family members and friends informed of events when telephone calling was ineffective for reaching large numbers of people.

Writers used the blog to advocate for care for their child by reaching out to others in similar circumstances and to advocate for improvements in and funding for cancer research. Many used the blog to preserve memories, as an archive of the events, the changes in family life, and the feelings experienced. Another purpose for blogging was to explain to readers more about the decisions made on behalf of the child or about procedures and treatment events.

The comments from readers followed similar patterns of the themes and purposes listed above. It was easy to see how important readers were to the bloggers, especially in the entries by bloggers who made direct requests for more responses. Readers seemed to offer comfort, support, affirmation of feelings and a sense of community when families were feeling particularly isolated. In my report, I describe the contribution of readers as ballast, or a steadying effect, when bloggers� feelings or events were off-balance.

I intend to share the findings of this research with healthcare providers, especially nurses, in professional settings. This may be in the form of research journal articles or in presentations at professional nursing conferences.

Be assured that all the names in your writing were changed in the dissertation (the report of my research) and would never be used in any publication or presentation.
I am grateful for your willingness to share your stories with me. Reading them has changed me. It made me more determined than ever to improve care for children with cancer.

May you continue to inspire, to be inspired and to be blessed with love.

Sincerely,
Catherine Heilferty MSN RN
Villanova University
Villanova PA

Monday, January 31

Last week I found a little notebook full of jottings and thoughts and sighs from Sarah's treatment days. And since I know that this site is visited by families whose children are newly diagnosed and also families who are still in the midst of their battle, I thought that posting an entry or two from that journal might be helpful to them.

Plus it helps the rest of us remember the long and miraculous journey Sarah has taken.

This first one was written on August 21, 2002

WHY NOT HOPE?

This is one day after Sarah's bone and CT scans and two days before her seventh birthday.

Hovering here between two momentous occasions I have no guarantee that there will even be an eighth birthday; however, I'm gathering so much hope from the result of the scans.

Sarah was so glad about those results yesterday. She asked me, wide-eyed, "Was that a miracle?"

She is very interested in miracles, in life, in a future, in healing, in turning eight and nine and ten.

So much is out of her control; she's taken to and from the hospital, to and from different tests; she can't say, "No, I don't want that shot or that round of chemo."

And yet she stays so trusting, so sweet-spirited, so full of life that may or not be cut short.

She sleeps across the room from me, peaceful, still, delicate,lovely. The sound of her breathing is beautiful.

There is life in her body, a smile in her soul, a zealous grasping of vitality in every pore of her body. She is living to the fullest. As long as she has, she will live.

I don't want to get my hopes up falsely but I do have hope that someday I will see her as a teen, as a bride, as a mother, as an adult friend. Is that too much to hope for?

I don't believe that hope is ever wrong. I can hope as much as I want, as long as I want, as intensely as I want.

I will hope in the Lord and hope in doctors and hope in chemo and hope in the power of a little girl's prayers.

Why not hope?

Tuesday, January 18

Just quickly checking in to answer a question from the guest book.

Darla asked if the black and white picture of Sarah was taken with the new camera.

Darla, I agree that is a gorgeous picture; actually, it was taken two years ago when Sarah was at Victory Junction Gang Camp by a pro photographer who came in and took pictures of the kids.

As most of you know, we just celebrated Sarah's 8th anniversary of her transplant and what's a celebration without a dessert and some candles? (Or in this instance, ONE candle.)

Here are some pictures of our evening.

Happy Eighth Birthday, Princess Groovy Chick!

_________________________

Wednesday, January 12, 2022

Hello all!

Thanks so much for all the "rejoicing comments" you've been leaving in the guest book celebrating Sarah's 8-year transplant anniversary.

Some of you have been following her story from the very beginning and others have just started reading in the past few months; all of you though, have been so sweet to celebrate with us.

(You can scroll down a short ways to Monday's entry for a recap of her transplant "adventure.")

I want to take a moment to answer a couple questions that have come in recently.

Krista asked (after seeing the "E" on Sarah's transplant certificate) what her middle name is.

Sarah's middle name is Elizabeth. Sometimes I call her "Sarah Lizzy" or even just plain "Lizzy." She answers to them all!

Over at our family site,
Smithellaneous Trine asked a transplant question which I moved over here since it ties in so well with the transplant theme this week.

Trine wrote, "One thing I always have been wondering about Becky, what is the thing which make a bone marrow transplant so dangerous? I remember reading some of the old posts from that time in 2003 and one of then said that before you went to Duke for Sarah to have the transplant, you had been thinking about if Sarah would survive. But I still do not understand what makes it so risky?" Trine (from Denmark)

Trine, there are a few things that conspire together to make a transplant a fairly risky prospect for a patient:

For 2-4 weeks after the transplant, the patient has no immune system; the smallest germ or infection could easily take over and the child would have no way of fighting it off.

Other dangerous side effects are:
low platelets, low red blood cells, respiratory distress, fluid overload and
organ damage.

Another sobering fact is that the 3-year disease-free survival rate for stage IV Neuroblastoma is less than 35 percent.

Sarah's survival chances were even lower than that since she was diagnosed at an older age than most NB kids; the older the child is at diagnosis, the lower their chance of survival, at least with Neuroblastoma.

So I guess those facts help to give us all some extra insight into why we truly have so much to celebrate after EIGHT years of survival and great health!

Hooray and hallelujah!

_______________________

Monday, January 10, 2011

A BIG DAY!

I know you all thought that Sarah was fifteen years old but actually today is her eighth birthday--the eighth anniversary of her bone marrow transplant.

We never get tired of celebrating these momentous annual occasions and we never get tired of giving thanks for these bonus eight years of her life.

Here's a little pictorial trip down memory lane. (For you "oldsters" around here, it will be a review. For those of you who are new to the Smith Family's journey, I hope you enjoy taking this trip for the first time.)

A couple weeks before her transplant, we were given an amazing trip to Florida to enjoy Disney World.

However, even in the wonderful world of Disney, shots had to be given, feeding tubes had to be hooked up, nausea medicine had to be given.

That didn't slow the princess down too much!

Once we got back home (and right before she was admitted to the hospital), we had the joy of celebrating Christmas together. Of course, mixed into the sweetness of that celebration was the bitter knowledge that we could very well be spending our last Christmas with Sarah.

But even with that thought hanging over us? Joy prevailed.

Christmas gave way to some long and awful days (28 days, to be exact) on the bone marrow transplant floor of Duke University Hospital.

Eventually, Sarah felt strong enough to get out of bed and walk around the halls a little. She was so proud of her official transplant certificate.

She even eventually felt well enough to terrorize everyone she saw on her sporty set of wheels.

And then finally we got to experience the joy of Discharge Day!

A few minutes after she got out, Sarah got her doctor's permission to spend a couple minutes with Snowy; however, she wasn't allowed to touch him because of her compromised immune system.

(The black bag she's holding contained the meds/fluids that had to run through her central line 24-hours a day.)

I got a crash course in being her nurse and learned what all of these mysterious pieces of equipment did. What a scary (and precious) responsibility that was.

She and I moved to an apartment near Duke for three weeks (so that she could be seen by her doctors every day) while Nathan and Steve visited on weekends.

Nathan threatened her with all sorts of terrible brotherly threats on his visits which (quite obviously) terrified her.

And you know the rest of the story.

That twosome turned into this twosome. Quite a change!

And over the past eight years,our family has continued to celebrate Sarah, celebrate miracles, and celebrate life.

Thanks for celebrating with us today!

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January 2, 2011

Eight years ago today, we checked Sarah into the Duke Pediatric Bone Marrow Transplant Unit.

We had no idea how bad the ordeal would be, we had no idea what sort of long term side effects the aggressive treatment would produce, we had no idea if she would even leave that place alive.

I will always remember how brave she was walking down those halls to the toughest time she would ever face. (In fact, when I got a little overwhelmed getting settled into the tiny room that would be home for a month, she was the one who cheered me up.)

I never get tired of celebrating the fact that she left that place alive!

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Friday, December 24

Sarah, Snowy and I are holding the fort at home since Steve and Nathan were gone overnight on a short ski trip.

Since Nathan is home from college for a week, he was able to take Sarah out Christmas shopping. I always love it when the two of them are able to spend time together; they're pretty funny together and provide much better entertainment than anything you'll see on TV.

Here are a few pictures of them from past Christmases.

Thankful for family today!

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Thursday, December 16

Life Is Good

Over at Smithellanous all the chatter has been about Snowy being sick.

And since it seems to be Snowy Week around the Smith house, I thought I would post some of my favorite Sarah/Snowy photos. Just because they're such a sweet, dear little pair. And just because I love looking at their sweet, dear pictures.

These final two pictures were taken last year when we had to take Snowy to the vet after he became unable to urinate due to bladder stones.

After the vet had talked to us about the seriousness of the situation and then left the room for a moment, Sarah crouched on the floor to comfort her buddy. (Who was actually looking pretty cheery, despite the bad news)

I'm sot thankful for my family today--the two-legged members and the four-legged member.

And speaking of my two-legged family members, Sarah has been happily counting down the days till Christmas break. She has one more day (tomorrow) and then she's off for two weeks! And there will be presents! And her brother's coming home! And she gets to sleep in! And we get to go to Charlotte! And she gets to putter around on her computer! And read lots of books!

And best of all? Snowy is feeling better.

Life is good!

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Friday, December 3

Note: The graphic at the top of the page was done by Becky, not by our favorite computer guru, Wyatt. So although it's not quite up to the highest professional design standards, I had fun doing it.

AND . . . I was able to give (a very busy) Wyatt a little bit of a graphic design break!

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Thursday, December 2

OOPS. A correction.

In my post two days ago I said that Sarah was coming up on her 7th transplant anniversary. Jen signed the guest book and nicely reminded me that it's actually her 8th anniversary! (I told you math wasn't my strong point.)

Thanks to Jen for the reminder and thanks to the Lord for 8 great years!

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Tuesday, November 30

Hellooooo out there!

Has it really been twelve days already since I have updated? It seems like every time I blink, a week passes.

I'm thinking I should stop blinking. (Ya think?)

All is well in Sarah World. I was just thinking this very morning that we are just a little over one month away from celebrating the 7th anniversary of her bone marrow transplant.

Do you have any idea what percentage of Neuroblastoma kids are still alive seven years after a transplant? I don't have the exact numbers but I know they are horrifically and heartbreakingly small.

As we finish up Thanksgiving week, I find myself being thankful all over again that we had a 15-year old, lovely young lady sitting at the Thanksgiving feast with us, holding hands in the circle as we prayed, teasing her cousin, smiling at her grandma, helping with the dishes--vibrantly, beautifully alive!

At the same time, my heart hurts for those NB families who ate Thanksgiving without their child. Just recently, a young lady named Elizabeth Westberry who we met several years ago in the hospital passed away. Her father just wrote a wonderful, poignant post on her blog.

As I think about Elizabeth today, happy in heaven, I also think about her family, grieving here on earth. And I look at our own Sarah Elizabeth, healthy and happy, and I can't help but offer the deepest kind of thanks for her continued presence in our lives.

I've said it before and I'll say it again.

Hug your kids.

Spend extra time with them.

Be a little more patient today than you might have been.

Do it for Elizabeth Westberry and all the children who will be spending this coming Christmas in heaven.

That was then . . .

This is now . . .

So thankful.
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Wednesday, November 18

SCHOOL

Sarah got her first report card this week and got all A's and B's! And the two B's she got were just barely below an A.

We are so thankful that a cancer survivor like her who has been through so many harsh chemical treatments (known to affect learning ability) is doing so well her first semester in High School!

According to the neuropsych testing she's had done, she should be struggling with school a whole lot more--but we're quite okay with her proving all of that official testing wrong!

I'll close with a recent picture of her and her "favorite dad." The two of them have the best time together making jokes, discussing words, and trying to out-pun each other. Between the two of them and Snowy, there is always plenty of live entertainment going on at the Smith House!

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Wednesday, November 10

DO NOT DRINK

Sarah has always had an interest in all things dramatic. Her love of books and movies and stories have given her an appreciation for flair-filled expressions of all kinds.

Which is why I shouldn't have been surprised when I saw this particular message on this particular water bottle in our refrigerator.

"Do not drink on pain of death."

I pondered that message for awhile, even as I stayed well away from the dreaded (and extremely dangerous) water bottle. I even peeked furtively around the room for any hidden cameras which Sarah may have felt compelled to install in order to reinforce her dire warning.

I mean, what was it about a plain ol' water bottle that was so special that it couldn't be shared with her own marvelous and wonderful family members? Had she given into the selfishness of youth and decided that she could no longer share things with the people she loved without the use of dark and dire warnings?

What had become of my sweet Princess Groovy Chick?

Eventually PGC herself wandered into the kitchen and (staying well clear of her and her scary bottle) I asked her about the message.

It turns out she had developed a cold A really bad one. And not wanting to share the germs with her family, she had attached the warning.

Aha. The light dawned.

We were being protected from a horrible fate by Sarah's thoughtfully scrawled missive.

After our enlightening conversation, I asked her to pose for a couple pictures in front of the famous bottle.

And then she went upstairs to rest. Leaving the drama filled water bottle behind.

And just so you know? All of us stayed well away from the bottle.

Which is really the only reason I am still alive to tell this story.

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Monday, November 1

PICTURE MISCELLANY

I just realized that I've gathered up a little ol' collection of Sarah Pictures which I haven't yet posted. So to start your week off on a happy note, here ya go!

Last night, we had a Halloween function at our church and Sarah dressed up as the Frog Princess. (From the original fairy tale, not the Disney move.)

This may not look like a terribly exciting photo but it was actually sort of landmark-ish. It represents the first time Sarah went into the local grocery store by herself, found the proper product (or in this case, proper produce--blueberries) and paid for it.

And I got to stay in the car and rest my weary bones. Ahhhh.

One of her first days of High School. She's still doing really well in her freshman year.

An artistic presentation of Sarah and her good buddy.

And lastly, a picture that I posted last year, but one that still makes me smile whenever I see it.

This was taken in the Milwaukee airport when we were flying home after my dad's funeral. Since we're such a "word family," to see this nice big word in an airport warmed our hearts to no end. (We're easily entertained.)

We hope you have a recombobulatory kind of week!

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Wednesday, October 27, 2010

A Video!

If there was ever any doubt that Sarah was my real, true, biological, Becky-born daughter, there a few things that would irrevocably confirm it: we both love books and music and words and writing and chocolate and reading and Snowy.

But something else we both love? Technology. And pictures. And messing around with all sorts of different ideas that combine those two elements.

Last week, Sarah created this video and when she showed it to me, I was utterly delighted and amazed by her creativity. She took dozens and dozens of pictures of herself and put them all together in a really cool way. (Be sure to don't miss the VERY last picture.)

(The songwriter/artist is Andrew Huang and the song, called "Love #1" is performed with his band, "Your Heart.")

Tuesday, October 19, 2010

As some of you remember, after Sarah's 28-day state on the transplant unit at Duke, we were required to live within 10 minutes of the hospital for several weeks.

She and I rented an apartment for the next month and Steve and Nathan came to visit as often as possible.

During one visit, Nathan and Sarah got into telling funny stories and singing funny songs as this collection of pictures so delightfully illustrates! Sweet memories.

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Thursday, October 14, 2010

Thanks to everyone who dropped by the guest book to say how long you've been visiting Sarah's Spot. I'm always amazed to find out just how long some of you have been reading and even EXTRA amazed that a few of you have taken the time to read through all the old journal entries. THAT is quite an accomplishment considering how long winded I got in some of those postings!

In this week's Sarah News: Her school has been having dress up days all week in preparation for the Homecoming game this Friday.

I thought I'd share the first three days so far.

MONDAY: A CHARACTER FROM A BOOK OR MOVIE

Sarah dressed up as Susan, from the Chronicles of Narnia. She also did her best to speak in an English accent for most of the day!

TUESDAY: SUPER HERO OR VILLAIN FROM A MOVIE.

Sarah dressed up as one of the wicked step sisters from Cinderella.

WEDNESDAY: WORK OUT/ATHLETIC DAY

Sarah donned a t-shirt and some sweat bands from her previous school.

She has had so much with all of this and has gotten all her outfits together without needing even one little ol' bit of help from me. Which is a good thing because I am not real creative in the area of Outfit Making.

To my eye, of course, she looks lovely regardless of what she's wearing. She is one special lady!

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Tuesday, October 5, 2010

Edited to add: Jodi: just for you! The missing collage! :-)

Now back to our regularly scheduled program . . .

Sarah continues to love High School, is making friends and earning all A's and B's. (Even in Honors English and Honors History.)

I can't tell you what a joy it is to drop her off each day and see her walk eagerly toward the building, anticipating a day of new knowledge, new experience, new friends.

I was recently looking through a few of her old Caring Bridge headers and was so taken aback by how much she has changed, even in the last couple of years. I'm going to re-post a few of those headers today.

Also, after you've looked through the pictures, would you do me a favor and drop by the guest book and say how long you've been reading Sarah Smith's Spot? You don't have to write a whole lot and if you don't remember exactly, just make a guesstimate.

Thanks! Enjoy the pictures!

(As always, thanks to our favorite computer guru for doing such an amazing job on Sarah's graphics.)

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Oct. 1, 2010

Just wanted to say THANK YOU to everyone
who voted for the past two weeks. After going back and forth between 2nd and 3rd place all week, the NB Idea (funding less toxic treatment) came in second and won $250,000!

On behalf of all the "Sarah Smiths" who will be diagnosed and treated in years to come, thank you!

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September 29

Before today's post, let me just mention that there are just two more days to vote. The NB issue has been sliding back and forth between 2nd and 3rd place for several days now and it has to be in at least 2nd place to get the money. You can vote here for funding less toxic therapy for cancer kids.

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(This is an excerpt from Sarah's page when she was about 8 years old.)

I have to smile whenever I catch a glimpse of Sarah's mother�s heart because it�s so sweet and dear.

I got a first hand demonstration of that �mommy heart� recently when I went wandering into her room one morning feeling old, tired, and a little out of sorts. Sarah was still in lying in bed, just barely awake. Without saying anything to her, I walked over to the bed and plopped myself down beside her, my back to her and my face toward the wall.

She whispered, �Good morning,� and we chatted for a few moments, but I just wasn�t in the mood to say much. As a comfortable silence descended between us, I could hear her little brain whirring as she thought, �Okay, mom seems kinda tired and down this morning. I wonder what I can do to help?�

Her first idea was to call her precious blankey into action; she gently placed it over my shoulders and carefully tucked it in around me. Then there was another short pause while she considered what the next course of action should be in offering cheer and comfort to her worn out mother.

A few more moments passed and then I felt her reach out and gently begin to rub my back with fingers that were butterfly soft and love filled. I just closed my eyes and drank in the sweetness of the moment, the feeling of a quiet, serene morning, tucked in with my daughter, her blankey, and her sweet, snoozing doggie. It was so wonderful to feel soft, loving hands on my back and to be in the soothing company of an 8-year old princess who was sensitive enough to know that this was not the time for mindless chatter and Sponge Bob jokes. She knew I needed quiet and peace and someone to draw a little bit of strength from.

After a few minutes of companionable silence, I gave her a kiss and left her room, refreshed by her ministrations and sweet encouraging spirit. I�ve often thought that moments like those are as important to her as they are to me as she no doubt thinks back to all of those days in the hospital when the roles were reversed and I was covering her with blankey and rubbing HER back. When it came time for the comfort to be returned, it was interesting that she chose to comfort in the way she had been comforted.

What a dear, sweet child she is.

Here are a few pictures of her from around that age.

At school, different kids were given the chance to make the morning announcements. Sarah was so excited when her turn came.

With Richard Petty. She didn't care whether or not he raced cars or not; she was just impressed that he had been on the front of the Cheerios box!

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Sarah Writes! Again!

This is a post by Sarah that she wrote as a result of an assignment in 8th grade answering the following question:

"What is something you do well and why?"

I would have to say that something I do well is working with words. All my life I have been around them and not just in everyday talk. Both of my parents are writers and songwriters, as well as long-time lovers of words in general.

Even when our living space was confined to a few hundred square feet during my early childhood, we never failed to make room for books. I�ve grown up on words as much as I have on food and water so it is natural that I like to utilize them. I grew up �eating� words so I am a writer, just like one who grew up eating fine cuisine is now a chef.

Now I am not saying that I am the world�s best word smith--far from it, in fact. This is because sometimes I use words that do not work with the context or are not exactly fitting to my audience; occasionally, I might even forget just the right word at just the right moment.

One downer of having wordy talents is that no matter how much you study the dictionary, read books about words, or participate in bouts of smart wordplay, finding just the right word does not always prove to be the easiest thing to accomplish with a whole lot of grace.

From what I have written thus far, it might be evident that, as a die-hard rambler, I can be very true to that title. If given the time, inspiration, thought provoking subject and a few other particulars, I might take a whole fifteen minutes just to prove one simple point of mine. You could consider rambling to be some kind of non-magical curse, but I don�t really consider it that way.

It is kind of strange because I do not think of myself as being long-winded. I may ramble at times, but it is only to either ensure the listener of my thoughts or as I said, to simply (or perhaps, not all that simply), prove my point.

The odd thing is that I also do not look at myself as being laconic, either. I�m not completely (or, at least, I hope not) prone to verbosity and I�m also not given to not talking, if I can possibly help it. It may seem like a bit of an odd mix when giving the description, but it is not that complex: I am just somewhere hopelessly lost in the middle between the two lexical adjectives.
I think that I am good with words only in these prolonging paragraphs of mine.

I love writing fiction about subjects ranging from alternative universes to things that could not (or could not normally) happen and pretty much anything in between.

Now it makes me wonder how I considered myself an anti-chatterbox when I just wrote two whole pages on proving my semi-long-drawn-out self.

Oh well�

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And now, for no reason whatsoever, I'm posting a few Sarah/Steve pictures. As Sarah's mom and Steve's wife, it always makes me so happy to see the special relationship the two of them share.

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Thursday, September 9, 2010

SARAH WRITES!

At the end of 8th grade, Sarah was given several miscellaneous subjects to write about. I'm going to post some of those entries here. They provide a nice snapshot of her personality, her sense of humor and her love of writing.

Her first assignment was to write a step-by-step description of how to do something. This is what she chose.

Getting ready in the morning may seem simple enough--we do it everyday, after all--but here is a how to guide that shows the process of everyday morning routines.

First thing to do--or at least after you have gotten dressed --is to make your bed. Although not particularly considered a must in the morning, it does make one�s room feel neat and clean.

This is just one of many ways to make one�s bed. Start by pulling the inner sheets over the pillow you sleep on. Then pull the over-coverlet over that and add the sham pillow and any decorations. The last thing to do (depending on how much of a neat-freak one is) is to smooth the blankets into place.

The second step is to eat your breakfast; it is, after all, the most important meal of the day. There are many types of food that can be concocted for the morning meal but let�s just use cereal as an example. Select the type that you�re in the mood for, and pour the desired amount of both the cereal and milk into a considerably-sized bowl. Now just grab a spoon and you�re ready to go!

Lastly in getting yourself ready is to brush your teeth � an important action that needs to be taken in order to rid yourself of morning breath. Just wet your toothbrush and squeeze the toothpaste from the bottle. You really only need a squirt the size of a normal pea. Then brush the top and bottom sets of your teeth, brushing in little circles or however recommended by your hygienist. When you feel sufficiently brushed up, spit the excess water and paste into a sink, which is the most highly suggested of places.

Once you�ve done all that, take a look in a mirror and smile!

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I've been working on organizing some family pictures and thought I'd share a few miscellaneous ones of Sarah through the years.

Enjoy your day! And remember, if you have any trouble tomorrow morning remembering the steps for getting ready, feel free to come back here and use this blog as a resource!

Click here to go back to the main page.

Click here to view older journal entries.

----End of History----