Thursday, October 29, 2009

Sarah Smith Day

As many of you know, almost seven years ago Sarah was admitted to Duke Hospital for a bone marrow transplant. She had Stage IV Neuroblastoma, a pediatric cancer with a dismally low survival rate. In fact, it's so low that to survive even seven years is almost unheard of.

Now I do realize that this is not
Sarah's blog. I also realize that this blog is usually reserved more for general Smith Family news. But today, as the writer of the Smith Family blog and as the mother to a certain Smith princess, I am hereby declaring today to be Sarah Smith Day and declaring this blog to be (temporarily) Sarah Smith's Spot.

And why is that? Because today is a big day. Today Sarah is going through her seven year anniversary, post-transplant studies.

And may I just say that being post-transplant is a really wonderful thing when you consider what it's like to be "mid transplant." Here's a photo to illustrate that particular experience. Not so fun.




Today's post transplant studies will include extensive blood work, a hearing test, an eye test, a pulmonary function test, a physical exam, and a check up with her oncologist.

The most challenging part of her day will be when she undergoes a heart test called a MUGA study. Here are a few pictures from her MUGA last year.







First she will be given an injection of a “tagging agent" called pyrophosphate that highlights her red blood cells. After 30 minutes, she'll be injected with the radioactive tracer which emits signals that can be detected by the specialized camera (gamma camera).

The reason for this test is that the massive doses of chemo she received can cause long term heart damage; therefore, it's especially important for her heart function to be checked on a regular basis. (Her doctors have already noted some heart damage which is why she has to have this more extensive heart test.)

So while Sarah and I are away from home twelve hours on this important, scary, tiring day, I'd like to leave you with a few "vintage" writings from her treatment years in addition to some pictures.

I'm doing that for two reasons: the first reason is that some of you may not have come here to Smithellaneous via Sarah's cancer page, so you may not be fully aware of her history.

The second reason I'm posting these things today is that I think it's always good to look back at where she's come from in order to appreciate more fully where she is today.

Today we celebrate a life that has been well lived and a life that will continue to be well lived. Welcome to Sarah Smith Day and thanks for celebrating her with us today.

_________________________________

This piece was written right after Sarah was diagnosed in May of 2002.

When Sarah was at home for three days (after chemo and before being re-admitted for an infection) we took her and Nathan to a kid's movie. I was so amazed at how different everything felt.

Before her diagnosis, I took her laughter for granted. She's always been such a fun, merry child and her happiness was a normal part of life. But sitting beside her in the movie theater, after having gone through two weeks of hospitalization, pain and uncertainty together, each smile and giggle was a beautiful treasure.

Her smiles before diagnosis were worth about a penny, they were plentiful and effortless. Her smiles after diagnosis are worth more than diamonds, not just because she's able to smile while walking a painful road but also because her smiles mirror her resilient and joyful spirit.




After the movie was over, I found myself watching the other children in the lobby. I noticed their strong tan legs, their shiny, healthy hair, their pink cheeks and I thought of the summer ahead for them, full of swimming, sleepovers, birthday parties, and camp outs.

Then I glanced over at Sarah with her awkward gait, painfully thin, white legs, pale face, dark circled eyes and I thought of the summer ahead for her--chemo, vomiting, limited time with friends because of infection, painful procedures and long hospital stays.





Right as I was thinking all of those sad, morose thoughts, Sarah caught my eye and flashed me her bravest, brightest grin; as she did, I caught a picture of the strong young woman she is becoming. Although I'd rather not see her go through the trials that are ahead I know that when she comes through on the other side of it, she (and all of us) will be changed.





While she's been hospitalized, we've had some special times together-- in the midst of the tears and trauma we've bonded more than I ever thought possible. At night, I crawl into the hospital bed with her, take the phone off the hook, get her blankie and we read a bedtime story.

It's amazing how cancer changes things. I remember (with regret) times when we were on the road, always frantic, always moving too fast and Sarah would say, "Mommy, will you play with me? Mommy, will you read to me?"

Sometimes I did stop what I was doing to play or to read, but there were many other times when the laundry to be done, the song to be written, the letter to be typed and the errand to be run called my name so loud that I neglected the important in order to do the urgent.

When she and I are tucked into that bed together, and all the wires and medical equipment are casting their scary shadow of uncertainty over our future together, story time becomes more than a book read together. Story time becomes sacred time. Every moment, every word, every breath is precious.
________________________

This was written following a 2-day visit to Duke.

Before Sarah and I left our hotel room for Duke yesterday morning, we sat side by side on the bed and read the Bible and prayed together. I chose to read the 23rd Psalm which starts with the words, “The Lord is my Shepherd.” Sarah and I took turns reading and discussing each verse.

As I looked at her dear little face beside me, lit from within by joy and a remarkable zest for life, I had to fight back tears when I got to the part of the chapter that says, “Yea, though I walk through the valley of death, I will fear no evil.”

I hugged Sarah and said, “You’ve spent so long walking through the valley of the shadow of death. I’m thankful you’re still here.”

We prayed together, our two heads bowed close together, our two hearts united by the awful, precious, indescribable experience of fighting cancer together side by side.

At the time that we prayed, we didn’t know how her testing results would come out; we did know however, that regardless of what happened, goodness and mercy would continue to follow us, all the days of our lives.

And even now, I remind myself that goodness and mercy will follow Sarah all the days of her life—no matter the number of days that are left. No scan or blood result or test can take that promise away.




A conversation after her relapse in 2006.

Sarah and I had an interesting cancer talk the other day. I was asking her if she understood why she had to continue taking her oral chemo even when her scans were clear. When she said she wasn’t real sure I explained, “It’s because the oral chemo helps to ‘mop up’ any very small cells that the machines aren’t able to see and that makes it less likely that you will relapse down the road.”

Very dry skin and lips were one of the side effects of that particular chemo.


She said, “It’s too bad we didn’t use that same plan the last time I was in treatment.”

I replied, “Well Sarah, we did.”

After that comment, a rather thick silence settled in the air between us and I could feel the implications of that statement hitting her like a bag of bricks. The inference was that we did the same thing last time that we’re doing now and yet the relapse still happened.

The further inference that I could see bouncing around in her brain was, “That means that no matter what we do now, I’ll probably relapse again.”

One thing I learned rather early on in this journey is that there are some conversations that cannot be painted a pretty color and tied up neatly with a bow. There are some conversations where a certain mommy is unable to come up with anything suitable to say. But it seems to be okay with the Princess; she senses the unspoken fears hanging in the air and acknowledges their presence; however, she doesn’t let them take root in her heart. She's just way too busy just living her life to do a thing like that!

______________________________

This was written about two years ago.

Sarah had a friend over the other day who was looking at a collage of pictures on our refrigerator showing Sarah in all different stages of treatment..

I happened to overhear Sarah as she gave the official “collage tour.” In a bright and perky voice (sounding for all the world like a tour guide) she said, “Now, in this picture, I didn’t have any hair at all. In this picture, I’m wearing a wig, but I’m bald underneath it. In this picture, I have a feeding tube, which basically kept me alive.

In this photo, I’m about to go into transplant where they killed my immune system and made me miserable and I thought I was going to die. In this picture, the transplant is over and my hair is starting to grow back and it’s really, really curly.”

A couple of Sarah's "cancer looks."

Hat over a wig


Princess crown


And on she went in her explanation, as cool and calm and cheerful as if she were talking about the happiest subject on earth.

She’s very pragmatic about her journey and her experiences and very rarely does she sink into mopey, morose depths about it. She usually just looks the whole thing squarely in the eye and accepts it for what it is: a journey that no one wants to take, and yet a journey that has taken her to a place of wisdom and strength and maturity that an easier road would have bypassed altogether.

____________________________

I wrote this following a round of tests at Duke that determined that Sarah was back in remission after her relapse in June of 2006.

After Sarah's big scan (the MiBG) in the morning, we had an appointment to meet with with Dr. Driscoll to hear the results. He had gotten delayed for about an hour and while we waited, I tried my best to stay calm. I finished a novel, reminded myself to breathe slowly, skimmed through two magazines, checked my watch, read another magazine, reminded myself to not stop breathing altogether and looked at my watch again. And again.

For those of you who have ever sat in a room waiting on important scan/test results, you know the wild mixture of fear and anxiety that races around in your brain.

When we were finally called back to the exam room, Dr. Driscoll greeted us, sat down, rattled some papers and said, “So let’s see here. Her hearing test yesterday was good; no change since last year, so that’s excellent. And let’s see what her blood work looks like.” (Rattled a few more papers) Okay, it all looks wonderful—absolutely perfect, everything’s normal.”

And all the while I’m about to JUMP out of my skin and scream, “The SCAN! What about the STINKIN' SCAN!?” (Because I'm calm like that.)

But thankfully, before I could get my “scan scream” wound up and ready to go, he looked at Sarah and me, grinned real big and said, “And also, the scan read absolutely normal. There is no evidence of cancer.”

Normal. Isn’t that a beautiful word?

I wasn’t sure what Sarah’s reaction would be, but she actually stayed pretty calm. She didn’t say a whole lot but just started grinning bigger and bigger the more Dr. Driscoll talked. And of course, Dr. Driscoll was doing his very best to “out grin” her so they were pretty cute together.

Sarah and Dr. Driscoll, the Duke oncologist who has treated her for over half of her life.


My favorite line of our whole conversation with him was when he said, “This whole thing is not logical; it just does not make sense for Neuroblastoma to respond to chemo as quickly as this did. Neuroblastoma usually has a reputation for being aggressive and fast growing.”

How wonderful to see something happen beyond the “wisdom of medicine!”

When Dr. Driscoll and the nurse practitioner finally finished with us and left the room, Sarah quietly slid off the examination table, took two steps across the room, put her little arms around me, and laid her soft cheek on my chest. We stood together in silence for a full minute, both of us aware that even one word spoken at a time like that would be one word too many.

It was one of the dearest moments of my life getting to share that hug with that precious child. In the sweet and serene silence, we celebrated the joy of love well shared and a battle well fought.

____________________________

I'll close with a few miscellaneous pictures from her cancer years. (And beyond.)

A serious moment with Mom


A not-so-serious moment with Dad



Sarah and Steve were always good for providing their own entertainment.


Getting to see Snowy for just a few minutes after she had spent a month on the transplant floor. She couldn't pick him up because of germs and infection.


Having a serious conversation with one of her doctors.



Whenever I see this photo, I'm always amazed at the look of peace on her face.


A family bound together by the heartstrings.


Patient Snowy


The lovely young woman we're celebrating today.

34 Had Something To Say (Just click here!):

leeanne said...

Oh what a truly happy day! Sarah Smith, you are such an amazing young woman!! So glad to celebrate this day with you!

Cindy said...

I am always amazed and humbled by Sarah's journey. God has great plans for her. I'm looking forward to reading what she does with her life.

Prayers for today's testing and good results!

Vicky said...

Praying and blessing God for Sarah today! What a beautiful young lady!

Pam D said...

Hurray for Sarah Smith! There is so much to celebrate, and all of the lovely pictures at the end of the post wrap it up nicely. No matter WHAT the heart scans say, WE all know that Sarah's heart is perfect and one of the strongest and best hearts to be found anywhere on this planet. Sending up prayers for more good news that will baffle and amaze the doctors...

Anonymous said...

Praising God for the young woman Sarah has become, strength and peace found through the journey and many blessings for your lives.

Vicky in Indiana

Mantiks said...

Celebrating Sarah Smith Day with gusto!

Every time I see a photo of Sarah now (or even better, see her in person!), I am amazed all over again by all that God has done and by what an incredible young woman Sarah Smith is.

Praying for a good (and quick!) day at Duke!

Love, Aunt Deb, Uncle Randy and Caleb

MaryH said...

I am proud and honored to celebrate Sarah Smith Day! It is a perfect day to celebrate! It is better than Thanksgiving and Christmas rolled into one!

Have a GREAT DAY Sarah Smith! I am praying for the best of the best of results from all your tests today.

You are amazing.

Thank you, Becky, for the look back at a miraculous journey.

Lesley said...

Oh, I so hope today goes well. Will you get all the results today?

krueth said...

Praise God for how well Sarah has done and is doing...Good luck today on your appt. Thanks for the look back on Sarah's treatments...wow! You are all amazing

MN Mom said...

I am writing this through my tears, as it always "gets" me when I read again about all Sarah has endured. What an incredible young woman you have! God's blessings to you all!

Debbie Jean said...

Happy Sarah Smith day! But I know in the Smith household, everyday is Sarah Smith day. She is a wonderful, beautiful and delightful young lady. I pray that her tests go wonderful today, and all is fine. She is a great inspiration to me as well as the rest of y'all. I love your family.

God Bless~
Debbie Jean

Anonymous said...

Your blog always leaves me feeling inspired and closer to God. Plus, I laugh a lot too.

We're about to adopt a little 9 year old, and I hope I'm half a good mom to our little girl as you are to Sarah and Nathan, Becky.

Jenna in Canada

P.S. I hope you don't mind me reading your blog since we don't know each other. I just sort of stumbled onto it- and was so captivated and encouraged by your words that I now read your updates daily!

P.S. Sarah amazes me. God has taken her struggles and woven them into a blessing.

Marysienka said...

Happy Sarah Smith Day!!! What a wonderful day it is for a unique and amazing young lady :) (and for the rest of the family as well, that's for sure!)
It's an honor for me to "know" you (even if it's just virtually), and today, all my good thoughts are going you way, hoping for good test results.

Thank you for sharing your thoughts and bouts of your life with us. Thank you for inspiring me everyday.

Renee

Anonymous said...

I've said it before and I'll say it again... and again and again, "Sarah, you are one of my heroes." And you too, Becky. God bless.
jenny in Idaho

Sue G said...

Your best writing is always when you write about Sarah. It must be because of the special bond you have with her and the faith and trust you both share with God. I am always humbled when I read these stories.

Humbled and hopeful.

Ann Martin said...

Wonderful! How far all of you have come and what a blessing and inspiration to us. So happy about the test results.

Billy Wedgworth said...

Wow it is amazing how god has given you guys joy and peace through this battle. I believe most christians would fail and give up. The story of Sarah and her journey through cancer has deifently touched my heart and strengthened my walk with the lord! I can remember when my mom had cancer and had surgery how hard it was and how god healed her and she has been cancer free for over 6 years. Praise the lord for his mercy and how he is the best father we could ever have.

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