In yesterday’s post, I alluded to the fact that we’d been through a hard week. Really hard.
It started last Thursday when Sarah started complaining of headaches, dizziness and fatigue; although she is someone who rarely naps, she took several naps over the course of a couple of days. She was also noticeably pale and had developed dark circles under her eyes. After she had missed two days of school, I took her to our local doctor’s office Monday afternoon. Sarah’s regular doctor wasn’t in so we saw her associate; he did a thorough exam and then ordered blood to be drawn for a battery of tests to be sent to an outside lab.
He also ran a quick CBC while we waited, just to try and get some preliminary insight into what was going on; the results revealed that all her levels were normal—except for her hemoglobin. It was low. For no reason.
My cancer mama radar immediately kicked in big time. And here’s why. Twelve years ago when Sarah was first diagnosed with Stage IV Neuroblastoma, three of her symptoms were 1) fatigue 2) paleness 3) dark under eye circles
In addition, I knew from my many years spent in the Neuroblastoma world that when this particular cancer relapses, it often does so in the bone marrow. And the primary symptom of bone marrow relapse? Low hemoglobin. I was not a happy woman.
I honestly think that if there had just been the fatigue, dark circles, and pallor OR if there had just been the unexplained low hemoglobin, I might have been okay. But when all of those symptoms happened all at the same time my Fear Meter kicked into high gear. Every cancer parent (and every cancer patient) knows that relapse is possible. It happens. And it never really leaves the back of our minds. But on the other hand, we always hold on to that fragile hope that maybe somehow we’ll escape it. Maybe somehow the specter of relapse won’t find us. Maybe we’ll dodge the bullet. But still, the fear never really leaves.
Over the course of the next couple of days, Steve and I shared our worries with each other while all the while doing our best to keep those worries from Sarah. I also emailed Sarah’s oncologist at Duke to check on what would be involved in having a special Neuroblastoma-specific urine test done locally. (This is the same test that confirmed her original diagnosis.) My plan was that when we went back to the doctor on Wednesday to get the results of all the lab work, I would request that this specialized urine test be ordered.
Needless to say, it was a long two days. No matter what angle I looked at it from, I saw plenty of things that indicated we could very well be facing relapse. Relapse. Right at the end of her senior year of High School with her whole life ahead of her? Unthinkable.
I couldn’t even go there. Really and truly. I could not even imagine it. Even though I know realistically that teens relapse all the time and families have to face it all the time, my mind couldn’t even get a hold of it. I prayed about it, tried to remain calm, and tried to go about my regular busy life; I especially tried to keep worry from my face and voice when talking with Sarah.
Finally on Wednesday, it was time to take her back to see her regular doctor. As Sarah and I sat in the exam room waiting for the nurse to come in and take her vitals, it suddenly occurred to me that if I was going to ask the doctor about ordering a urine test specific for NB, Sarah would obviously hear that conversation. I knew I needed to lay a little groundwork. Very quickly I explained to Sarah (in as low-key a way as possible), that her dad and I had been just a little concerned about the collection of symptoms she’d been having and just for our own peace of mind, we were going to request the NB urine test.
Well. Rather than get all freaked out over the possibility of a relapse, Sarah immediately became concerned for me. Her face softened with compassion and she said, “I’m so sorry, Mom. I didn’t know you were so worried about this. Why didn’t you tell me?”
I realized at that moment that I tend to forget that Sarah isn’t a little girl any more who needs to be protected from all unpleasantness–she is a young adult, capable of shouldering heavier burdens, capable of showing even deeper compassion and wisdom than ever before. And waiting together with her in the room for whatever news was to come, I loved that grown up girl all the more.
After the nurse had come and gone, the doctor finally arrived. She greeted us, chatted a minute and then said, “Sarah’s blood work looks great!” I replied,”You mean it looks great except for the low hemoglobin, right?” She said, “No, I mean it all looks great. Her hemoglobin is perfectly normal.” I said, “How can that be? On Monday, her hemoglobin was so low!”
She explained to us that preliminary blood work done at a doctor’s office can occasionally produce a false result. When all of Sarah’s blood work was done at the larger facility (and the hemoglobin re-retested) it turned out that the earlier number had been a mistake. She then went on to add, “I just want to say how relieved the other doctor and I were when Sarah’s lab work came in today and we saw that normal number. We were concerned for her, as well.”
So not only was the hemoglobin no longer an issue, Sarah had also started to feel stronger over the preceding few hours, with both the fatigue and dark circles abating. The doctor said those symptoms could very well have just been the result of a virus. After talking with us a few more minutes, the doctor left the room for a moment. As soon as she disappeared through the door, Sarah got off the exam table, took two steps over to me, and slid into my embrace. We stood quietly in the middle of the room, crying, hugging, and being oh so thankful.
When the doctor stepped back in the room a moment later I said, “Please excuse us. We are just having a mama/daughter happy moment.” She looked a little teary herself as she said, “Oh, I completely understand. This truly is great news.”
Sarah and I held hands as we walked together through the fading March afternoon back to our car. I don’t know what Sarah was thinking but I was thinking, “Thank you. Just thank you.”
I knew that if all those worrisome symptoms had led us down the road to relapse, we would have faced it and we would have handled it, just as we had faced and handled her original cancer. But it broke my heart to even think of it, it broke my heart to think of Sarah starting that horrific journey again.
And then I thought of all the families I know who didn’t get the news they wanted at the doctor’s office and my heart’s gratitude immediately blended with stirrings of compassion for each person who is still in the midst of the struggle. We are all a part of the same family–each of us who has ever dealt with this disease. And whether or not we are still actively in the fight, or whether we find ourselves far from the front lines, none of us ever truly leaves the war behind.
We will always carry with us the memories and the stories and the scars. And for our family this week? Well, we are carrying a little something extra. We are carrying a little something extra called gratitude. So much gratitude. Gratitude for this sweet face . . . this precious life . . .this bright future.
Dear Becky, I cried when I read this update. I have followed Sarah’s story almost from the beginning. It struck fear into my heart to hear she was unwell and what your concerns were. Then I got to the happy ending – that’s when the tears came. I am so happy she is well again. We often think of Sarah. My daughter Juliet is doing a PhD in Cancer Genetics at a cancer research lab in Oxford; at her interview they asked her why she wanted to go into cancer research: she said ‘when I was a teenager, my Mum gave me a link to a blog about a little girl named Sarah..’ Go Sarah! Live well and live strong.
Teresa,
Your comment just made my whole day. Really!
I know you are so very proud of Juliet (she sounds like one smart lady) and to think that Sarah had some small part in confirming her life’s work . . . well, that is just incredible.
It’s so true that the hard times we go through are never without purpose. Thanks for that reminder and thanks again for taking the time to comment. It means so much that you would care enough to cry along with us–through the sorrow and the joy!
Oh my goodness! I WAS going to go for a walk. I need to get back into exercising but I wanted to check up on y’all first. Yes I’m a procrastinator. That’s what I do. 🙂 I am in tears now. First it was really sad tears because I read the post about your friend’s’ son. Then horribly scared and worried tears when you mentioned relapse. Then completely relieved hallelujah tears when you said the blood work is good and it’s probably just a virus! Who knew you could have so many different kinds of tears in the span of 5 minutes? THANK GOD for a healthy Sarah!
Lizz,
I hope you eventually got your walk in! Thanks for your concern and the sad, relieved, and happy tears!
🙂
So glad you received good news. Have not been reading for the past week due to activities with our family. God is good all the time.
Ann,
I know it’s been a busy, tiring time as you’ve laid your sweet mom to rest. She was so very well loved. Hugs to you and Jim.
Becky –
I just read this. I am so grateful that y’all don’t have to know the painful realization of a second relapse. BUT, if it does happen again it sounds as though that little girl you have raised has grown into a woman with the strength and wisdom to handle it. That gift, the strength to be able to handle that unspeakable, I suspect she will be able to use that in many of life’s difficult circumstances.
Brooke R. — Your comment was astonishingly insightful. You found the lesson that we should have taken away from this story. It is difficult for parents to see when their children have “grown up”, and sometimes we need help in discovering that wonderful truth. ~ Fred
Fred,
I agree with you completely; great comment.
Brooke,
How very right you are. Strength and wisdom are two perfect words to describe our grown up warrior.
I have occasionally wondered how you handle the ever-present fear of relapse, but never asked because, really, why dredge it up? Not to mention that isn’t any of my business in the first place. Reading this just reinforced… your family is remarkable. You handle that kind of gut-wrenching terror the same way you handle everything else — together, with prayer and faith.
Glad that Sarah is dealing with just plain-old sick… but still hope she’s feeling back to her perky self!
Kristina,
I know that in probably every cancer family’s mind, the thought of relapse is sitting there on a back burner –you never really escape it. But how lovely to have a scare turn into nothing. As you said so well, we’re happy for plain ol’ sick!
And thanks for the sweet words about our family; prayer and faith are definitely a large part of who we are.
The words “Thank God” are so common and often used without realizing precisely what you are saying. But today, after reading your post, the words THANK GOD took on new meaning. Knowing the relief and gratitude I feel, I can only imagine how you and Steve and Sarah feel … Thank God!
Paige,
That’s absolutely true–when you go through a scary time, “Thank God” becomes even more heartfelt than ever.
Tears of happiness from Dallas! Praise the Lord!
Anonymous,
Thanks for caring enough to shed those Dallas tears; that means so much!
Wow, what a crazy few days! Unfortunately, we (my family) know that feeling; except our ending wasn’t as blissful as yours!! I’m so grateful that your family was spared this time & prayerfully, forever! Thankfully, you alluded to how it ended ahead of time otherwise I’m not sure I’d have been able to get through the post in one reading! I did cry as I read the post because of the array of emotions it elicited. My favorite, was the pure joy & utter relief I felt when I got to the very end! I’ve never been so happy to hear someone has a viral infection in my entire life! I can’t help but think about that young man with neoroblastoma (Rob??) you wrote about several years ago? I hope your family never has to go through that, ever again! Much love, Jodi
Jodi,
Sarah and I were basically saying that same thing as we left the doctor’s office that day which basically was, “Woo hoo for viruses!” 🙂
On a more serious note, so sorry that your family has faced the bad news at the doctor’s office and its outcome. Hugs.
Becky, I’m glad your readers said what was in my heart – I didn’t know where to start. But I think your summary spoke for all of us: “We are carrying a little something extra called gratitude.”
Fred,
Yes, I’ve got wonderful readers who write their hearts so well! And as this week begins, I still carry that gratitude along with me.
Oh my, I was scared just reading that post. I’m so glad you got such great news! And glad Sarah is feeling better. Happy Spring!
Gayle,
Spring got a whole lot happier as we left that doctor’s office with good news! 🙂
What a differfence in the walk from the car – to the car. Praise the Lord!
Sharyn,
That’s a good point; I hadn’t really thought about that but our two walks that day were very, very different. Thankfully!
My heart was in my throat too as I started to read, I saw your earlier post and was thinking “Oh no”, so glad everything is okay, I sent you a fb message Becky, asking you to pray for a family going through the same thing, when you get a chance, it’s in your message part of your fb page…thanks…
Dale,
Thanks for the FB message; I am so inspired by that family and their journey!
My heart goes out to you and Sarah! I shed a few tears reading the entry! Glad all is well! HUGS to you both!
Kristi,
Tears appreciated; hugs welcome. Thank you!
So thankful! My heart goes out to you,Steve and Sarah. Miss you all!
Patricia,
We miss you guys so much–thanks again for the great influence you have had in Sarah’s life!
I am so happy Sarah is ok. Praise the Lord!! I can’t imagine how scary it must have been for you..I’m glad she feels better….
Michele,
Scary is a good word for it! Thanks for being grateful with us!
Praise the Lord!
Kristen,
🙂
Becky, I cannot imagine the fear you and Steve lived with this week. So relieved to hear your good news. Treat yourselves with care after what you have been through.
Liz,
Well, last night to celebrate our good news, we had pizza and watched a DVD together. We don’t often order in pizza so that made it extra celebratory! 🙂
Glad the results were positive when they retested the blood!
Guess I really mean that they were negative. Anyhow, glad the results were good!
Phyllis,
Negative, positive–who knows what the correct medical terminology might be? 🙂 But the word we DO understand is GOOD news!
I started following you through CaringBridge and almost did not want to read the post. Gratitude comes from your “extended” family as well. Rejoicing indeed!
Deb,
Love to hear from our CB followers! Thanks for being with us through the years and rejoicing over our healthy, happy girl!
Becky, I’m so glad you included the word “gratitude” in the title of this post, or I’d have been far more worried that I was while reading it! Praise God for the wonderful outcome!
Jan,
Well, for your sake, I’m glad I included it, too! 🙂
I cannot imagine your worry but I’m so glad that the depths of worry lead to the complete other ed of the emotional spectrum.
Kiss your beautiful girl from this momma.
Love Bec (in Sydney)
Bec,
You’re right–you don’t truly appreciate the happy end of the spectrum until you’ve been to the scary end. Thanks for the Australian hugs. (Would love to visit your beautiful country one day!)
Praise The Lord! Thanks for sharing your testimony!
Karen,
With such a good result, it was a joy to share!
As you said–thankful, just thankful.
Love deb
Deb,
Thanks for the prayers and support . . . and the rejoicing.
I read this with tears in my eyes and ended with happiness in my heart!
Jessie,
Tears and happiness . . . you wouldn’t think they’d go together but they do!
Phew!
Steve,
You said it!
Thank God!
Scooter,
indeed!
I read this post with my heart in my throat…I even think I was holding my breath…I am soooo thankful to our Father for this wonderful outcome! All of us who enjoy your blog are thanking Him too, Becky. Whew! I can breathe now!!
Jojy,
You can join the Smith family as we all breathe easy, too. (Breathing is a very good thing.)
So very glad with the end results of Sarah’s tests. My heart was in my throat as I began to read your post!
Cindy,
We are on thankful Outer Banks family!
Oh goodness … so glad the lab work turned out well. What a relief. Thankful also!
Karen,
It’s nice when a lab work mistakes works in your favor instead of against you!
On my!
“Plop, plop, fizz, fizz
What a RELIEF it is”
to read that Sarah is fine.
What a scary few days you had, that’s for sure.
Praise the Lord for the good outcome!!!!!
Mrs. Pam,
Loved the plops and the fizzes. A relief, indeed.
So glad Sarah’s results were normal and you can all breathe again.
Jan,
Truly glad here, as well!
Phew! I’m glad to hear Sarah’s bloodwork was fine in the end and that she is feeling better. What a rough couple of days it must have been for you!
Renee,
Yep, I never knew two days could be quite that long. Such a relief!
Oh My Dear Lord! I can breath again. As soon as I started reading this post, fear was griping my heart and I was praying, dreading the news at the end. Thank you God and all his angels and saints for providing one more miracle (even minor in nature) in the life’s journey of Sarah Smith! With tears of joy, I say “YES” and THANK YOU! Just THANK YOU!
Mary,
Thanks for caring enough to fearful with us and caring enough to rejoice with us!
So very glad that Sarah’s results came back perfectly normal.
Thanks, Frapper. Seeing her pink, healthy face this morning as she left for school was such a joy!