TEN YEARS AGO, on May 17, 2002, we heard the words, “Your daughter has cancer. She has a 15% chance of surviving five years. It’s very, very bad.”
TEN MINUTES AGO, I returned from taking my “probably won’t survive cancer” daughter to High School, where she is earning straight A’s and doing great. As I left the school parking lot, I wiped tears from my eyes as I thought about how very differently things could have turned out.
Driving home, I thought about a piece I had written for her Caringbridge site which looked at her cancer diagnosis from the vantage point of her five-year anniversary. When I got home, I pulled it out and re-read it and I discovered how appropriate it was for the ten-year anniversary, as well. In fact, you could take out every reference to five years and replace it with ten years, and the sentiments would be exactly the same.
And so here is that classic piece that celebrates the life of our beloved girl. Whether it’s 2 years, or 5 years, or 10 years, the joy of the miracle of her life never changes.
FIVE YEARS AGO
A Cancer Diagnosis Retrospective
May 17, 2007
Five years ago today our lives were shredded by four words, “Your daughter has cancer.” Our minds whirling and our hearts breaking, we could barely stand to peer five minutes into the future, let alone five years.
But here we are. Miraculously. Incredibly. Here we are.
Last night I stood at the kitchen window and watched my small survivor on the backyard swing set, legs pumping enthusiastically, hair swirling wildly, shining eyes fixed on the smiling sky above her.
I looked up at the sky then too, and whispered words of thanks that heaven hadn’t come to take her home. I whispered thanks that her home was still in my backyard, still in her pink bedroom, still in the walls that give her shelter and absorb the splashes of her spirit and her laughter.
Five years ago, Sarah was lying on a hospital bed in Winston Salem, NC, so terribly, terribly pale. Her hospital gown hung off of her thin body and her eyes were dull and rimmed with black circles. Her room was a medical grand central, playing host to an unceasing stream of somber-faced, serious-talking, big-word spewing medical professionals.
I watched them come and I watched them go. I watched them take irreplaceable pieces of my daughter’s childhood with them as they left.
At six years old, she wasn’t even able to pronounce the name of the disease that had invaded her body. At six years old, she wasn’t able to understand that her world had just changed irrevocably and that horrendous physical and emotional pain would come to be a part of her life. When she was handed her cancer diagnosis, she was also handed a passport to a place where she was too young to be an adult but too old to be a child.
Five years ago, I felt tears rain down my face and slide into the macaroni and cheese the hospital had delivered to the room. Five years ago, I looked up into the eyes of my husband and saw fear and grief and anger and panic and love.
I followed the gurney carrying my weary daughter down to the scanning room where I heard that the cancer had completely taken over her small body; it was in her skeleton, her skull, everywhere, from top to bottom. I heard there was a tumor in her abdomen, and I heard that she was in the worst stage of the childhood cancer that has the worst survival rate of them all.
I listened to her cry when they injected the scanning dye and I laid my head near her head on the scanning table and joined my tears with hers.
I will never forget, in that dreary moment of despair, the compassion shown by the technician who was in the room with us. She laid aside her professional reserve and came and stood quietly behind me. She laid one hand gently on my shoulder and said the best thing possible—absolutely nothing. It was a tender and silent sharing of sorrow, a wordless bearing of grief.
Five years ago, all the scans and tests finally came to a merciful end and at 11 pm on her diagnosis day, we loaded our suitcases into the van and headed back home for a weekend respite before the start of treatment. I sat in the bench seat in the back of the van so that Sarah could stretch out and sleep on the way home. I will never forget the horror of that hour-long ride. As Sarah laid her head in my lap and fell into an exhausted slumber, I fought back waves of panic and claustrophobia, terror and grief.
The bright, big world I had awakened to that morning had, in a moment, crashed down all around me, crushing the very breath out of me, diluting the peace of my soul.
Five years ago, I sat in that van and stroked Sarah’s hair, watering it with my tears. I thought about the soon-to-come day when it would all fall out and there would be nothing to stroke but soft, sweet skin.
Five years ago, I saw no hope. Five years ago (plus a day), I stood in the Barbie aisle at K-Mart and cried, thinking of the day when there might no longer be a daughter to buy Barbies for. I went home and sat on the couch and silently watched Sarah sit on the floor and play with her toys. She was listless and tired and her heart wasn’t in her play. I think that deep down she felt the change in the air and she was reaching out with her little hands and heart, trying her best to capture the essence of the child she had been, trying her weary best to still be six years old and carefree, even with the sound of doctor’s voices ringing in her ears, even with her mom crying on the couch.
I have video of that day and when I watch it now, I am struck by the shadow of death that was already stealing across her pale face. I am struck by the horror that she was providing shelter to a merciless killer which even at the very moment I was taping, was insidiously creeping and growing and multiplying inside her precious body. And yet, regardless of all the ugliness that was going on inside her, the camera still caught the quiet glow of a spirit that was not ready to give up, that was not ready to give in. I saw in her eyes the smallest of sparks and my heart lifted at the sight.
And now. Now, here we are. Five years later.
Sarah has just gone off to school, talking, talking, always talking. Maybe she’s making up for those long days and months when she lay in a hospital bed too weak for words. But regardless of the reason for her garrulity, I welcome the sound of her sweet voice echoing through every room of the house, echoing through the garage as she’s climbing in the van, echoing through my mind even when she’s away from the house.
The sound of angels singing is in her voice.
She lay in bed beside me last night, both of us reading a book. Snowy (as usual) was wedged in between us, snoozing with a certain canine smugness that proclaimed, “Ahh. This is the good life.”
I looked past Snowy at Sarah and noticed the incredible pinkness of her cheeks, the lively sparkle of her eyes, the sweet roundness of her face. Clad in lavender, ruffly pajamas, with silken hair flung across the pillow, I suddenly saw in her a warrior who, against all odds, had once again found her childhood. And I was grateful.
Will she always be changed by cancer? Yes.
Is that a bad thing? Not really.
Her heart is softer, her appreciation of life is much more keen that it would have been otherwise.
Five years ago, one way of life was stripped away and another one took its place. But that’s okay, because the operative word here is life. A heart still pumps, a life still goes on.
In the world of Neuroblastoma where most of the children diagnosed are no longer alive five years later, life is indeed a sweet and wonderful thing.
Yes, things are different now. Yes, she has hearing loss, short-term memory damage, cognitive difficulties, immune system problems and hormonal challenges. Does it matter? Not today. Not five years after the day our world changed forever.
Today we put all our sorrow behind us and we put our joy up on a flag and wave it for all the world to see. Sarah is alive and, for the moment, tears are a distant memory.
Tonight, we will gather for supper and share the joy of five years of life that she almost didn’t get to have. We will gather and be grateful for prayer and medicine, for doctors, and for a medical technician who took the time to share our grief.
We will be thankful for swing sets and books in bed and loyal doggies and the banishing of the shadow of death from a face we all love so much.
We will be grateful for our Princess Groovy Chick, our angel, our Sarah, our survivor: five years later.
Really a true miracle.
Beth, it’s so good to hear from another Wisconsin friend! Thank you for rejoicing with us.
10 years ago I received a phone call from Gordon Goertz telling me of Sarah’s diagnosis and requesting prayer. 10 years later…my heart stands still upon seeing the healthy robust photos of Sarah and hearing of her accomplishments. An incredible young woman with a mighty testimony! Thank you, God!
Guerrina, Gordon was signing our FB page yesterday rejoicing right along with us. Don’t know if you knew that his granddaughter has been rushed to hospital overnight with seizures.
Your daughter is beyond an inspiration … she’s a real life miracle! She is, no doubt, the product of the power of prayer.
I heard a saying the other day “when you are down to nothing, God is up to something”. Can’t wait to see all God has in store for your sweet girl. 🙂
Congrats on 10 years, Sarah … and academic excellence! You’re one incredible gal, with an incredible future ahead of you!
“Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That’s why it’s called the present!”
Hoping and praying you are blessed with many “presents” ! 🙂
LizziLu,
Thanks for your beautiful comment and for the wish for many more “presents” for Sarah. That is definitely the prayer of us all!
Wow! Those pictures say it all. Sarah is a true miracle! Praise God!!
Michelle,
I don’t think it’s ever been more true about pictures being worth a thousand words than seeing these photos of Sarah. They say more than I could ever write!
Thanking God for Sarah’s life today!
Mitzi, we’re thanking Him with you!
This week has been a difficult one for me as two dear Christian friends left this earth. It is so good to have a positive “good news” item for this day. We will have the service for one friend Friday at 11 AM and she would have been 87 on Sat. The other friend will have a memorial service on Monday at 4 PM–no burial for her. Both were very unexpected sudden deaths which made it even more difficult. Please pray for both families and us. God is good and I am so glad I can share Sarah’s wonderful anniversary and help make this a happier time.
Ann,
I saw you talking about that on FB and felt so sad for you and the loss of these two very dear ladies. To lose them so unexpectedly makes it all the more difficult, as well as losing them at the same time.
I know one thing–they were very blessed to be able to call you a friend!
I prayed for Sara and often wondered how it all turned out. It is even more important to me now as this past year I faced my own cancer at a stage 3. But God….is faithful and today I am feeling wonderful, and the tumor is gone…. just 8 months after my treatments began. I praise God for Sara’s miracle. Every day with God is a miracle.
Motherjohnson,
So thankful with YOU that your tumor is gone after 8 months. Such a wonderfully joyful thing to report.
And thank you for being happy along with us over the miracle of Sarah’s life.
Becky, my Aunt is still battling AML leukemia (you may remember me writing to you for advice on where to buy real hair wigs). She was supposed to get a transplant this month – but the cancer returned so she is back in the hospital getting another round of strong chemo. I keep wanting to direct her to your site – or perhaps Sarah’s site…but I am having trouble finding a post that will summarize some of what you went through during the transplant. Any ideas?
Rachel,
Yes, I do remember you writing me. I’m so sorry your aunt’s cancer is back and the transplant has been postponed. That is some tough, tough news for you and your family.
Let me give some thought to how to make a place on the blog to summarize our cancer stories; that is a really good idea. I may try to put something on the nav bar at the top of this site in the next couple days.
Truly a miracle from God. What a beautiful testimony! You GO, Sarah!!
Jojy,
Miracle and testimony–two good words for our princess!
So beautifully written. It brang tears to my eyes. I think of Sarah so often, when sometimes things go too wrong with “my kids”… and then it gives me hope and strenght to go on and believe that miracles do happen.
Warm hugs your way,
R. aka Marysienka
Marysienka,
So good to hear from you! I’m glad that Sarah’s story gives you some encouragement as you deal with your own patients. Miracles do, indeed, happen.
Becky, Thank you so much for sharing this. It’s the first post I saw on fb today.What a miracle God has done!! I remember praying for Sarah. I remember the heartache you guys were going thru even tho I barely knew you. I remember you coming to our church in Waupaca and buying a tape where Sarah even sang a song and I can hear her singing about football and going “touchdown”. I remember asking Randy & Debbie how she was doing. I also remember praying for you and how surprised or scared you were when you found out you had cancer. Are you also cancer free? I WILL REMEMBER THE MIRACLE not only in Sarah’s life but in yours as well and all the other lives she’s touched. God bless all of you!!
Barb,
So nice to hear from a Wisconsin friend. Yes, I am cancer free; I had a bilateral mastectomy shortly after diagnosis and am doing great. So thankful that Sarah and I are both on the other side of that difficult time in life.
amazing post!
Laura, thanks. She’s an amazing gal.
What An Awesome GOD we serve!
Sam,
How very true that is.
So grateful…
love deb
Thanks, Deb. You were there for that time after her transplant and were such a blessing to us both. I’ll never forget you shopping for groceries, cleaning, cooking, and leaving us a freezer full of food when you flew home.
Sarah,
We love you. We Praise God for your life and His healing touch. You are the living example of Jeremiah 29:11. Steve and Becky, thank you for allowing us to share in this moment with you. Today we CELEBRATE!!!
Praise the Lord,
Melody Partin
Meloday, thanks for celebrating with us. Give Hope a hug for me; she is such a blessing in Sarah’s life.
This brought tears to my eyes. She is such a wonderful, beautiful miracle girl.
Jessica, yes, a lot of happy, thankful tears being shed today.
I really love that picture of you, Sarah and Steve near the end! That picture says so much more than any words ever could. Happy, Happy Anniversary to Sarah and all of you guys!! 10 years is awesome!! I am so glad that God chose to keep her here on Earth, so that we can watch her grow and become a wonderful young lady! Enjoy today, and every day!!
Tiffany,
That’s one of my all time favorite pictures too.
Though I have seen these pictures before, they grip my heart and remind me we serve a God of miracles. A God of second chances. A God who answers prayers. And a God of HOPE….and I am so very thankful. We are all blessed to be a small part of Sarah’s world.
A God of HOPE–how very true that is.
SARAH: A BEAUTIFUL MIRACLE, THAT’S FOR SURE!!!
And, of course, aided by the love and prayers of her family and friends.
Mrs. Pam,
Thanks for rejoicing a long with us.
I cried again today, too. She’s a miracle.
Cheryl,
I’m always honored to know that people cry along with us; that means so much.
A miracle, this child of yours…
Jan,
Yes, indeed.
HOW AWESOME A GOD WE SERVE~PRAISE YOU JESUS FOR THE PEACE AND JOY THRU SUCH A HEART WRENCHING TURMOIL TIME!!
Anita,
So, so thankful. Thanks for joining us in the celebration.
Brings tears to my eyes…and my face…every time I read this. What a true miracle!
Heidi,
Thank you for crying and rejoicing right along with us!
God is GOOD!!
Yes, He is.
Becky, I remember reading this post 5 years ago. I cried. Today I cried again. There just aren’t any words right now other than ‘Thank God’ and ‘miraculous’. Sarah, you are a warrior that has fought the worst of the worst. And you survived. Congratulations!! 🙂
Lee Anne,
It’s been a long, long road; can’t even say how thankful we are to be at the 10 year mark.
There seems to be only one thing to say. PRAISE OUR LORD!
And that’s a GOOD thing to say!