The Kleenex Box

I was just thinking this morning that we are about six weeks away from Sarah’s 10-Year Diagnosis Anniversary. (May 17, 2002.) And it occurred to me as I looked back over these past years that when you have a child who is diagnosed with cancer, you don’t just deal with the trauma of the original diagnosis day. You also have to survive the countless follow-up visits, scans, tests and ensuing results.

Since Neuroblastoma has such a high relapse rate, every single scan or test Sarah has ever had has ushered in days of anxiety and worry until we finally got the All Clear from her oncologist. This was especially true when a scan followed any particular period of time when she was exhibiting worrisome symptoms.    I’m thankful that she no longer has to have scans done and therefore we no longer have to endure that horrible Post Scan Anxiety.

The archived post I am sharing today is a good example of that whole scary scenario that we experienced way too many times. Although I don’t remember the exact details of why we were more concerned about this scan than others, this piece brought back so many memories of those awful days when it felt like one’s whole existence hinged on one phone call.

Looking back at these kinds of stories  (and looking at the accompanying pictures) always makes me all the more thankful for the healthy, happy High School student I just dropped off at school a few minutes ago. To be a 10-year survivor or Neuroblastoma is almost unheard of and we are so very grateful.

I first posted this on January 15, 2007, a few days after one of our visits to Duke for scans.

The Kleenex Box

It’s been a long day. Every time the phone rang, my heart jumped. (I’ve got it in my head that good news comes by e-mail and bad news comes by phone, since that’s the way it’s always worked in the past.)

But no phone call.  No e-mail.

I stayed pretty steady emotionally all day, even after sleeping very little last night.  Went to work, came home, took a brief nap, put some soup on to simmer and then took a walk with Steve.

As we walked, we talked about everything except Sarah, both of us unwilling to go there.  Finally,  when I brought it up he asked, “Do you think Sarah is aware of all this stress? Do you think she’s been thinking about the fact that we’re waiting for results?”

Miss Infinitely Wise Mother here said, “Oh no. I don’t think so. She hasn’t mentioned it even once all weekend and last time we were waiting for results, she asked me half a dozen times a day about it. So no, I don’t think she’s worried.”

Who knew that an infinitely wise mother could be so infinitely . . . wrong?

Nathan was gone for the evening and since Sarah was playing with a friend upstairs and didn’t want to eat right then, Steve and I returned from our walk and sat down to eat alone.

Well, at least he started to eat.  I started to cry.

It finally all just hit me, all the efforts to not worry, to hold it in, to put on “my game face,” to act like all was well.  It was just too much. In fine husbandly fashion,  Steve scooted his chair around next to mine, put his arms around me and handed me a Kleenex.

I eventually recovered, we finished eating, and he left to take Sarah’s friend home.  Sarah came downstairs to eat and as she was spooning her soup into her mouth, all of a sudden I saw the spoon pause in midair.  I saw her eyes fasten on something in the middle of the table.

The Kleenex box.

She turned her gaze in my direction and said with studied casualness, “Mom, why is the Kleenex box in the middle of the table?”

I replied, “Oh. Um.   (Long pause.)  It’s there because I had to blow my nose.”

She said, “Hmmmm.”

The spoon went back into action and I breathed a small sigh of relief.

And then—the spoon stopped again.

And the next question came, “But Mom, why are your eyes red?”

BUSTED!

And not only busted, but also in the unenviable position of being on the receiving end of Sarah’s laser gaze.  Anyone who’s ever spent much time with  Sarah knows exactly what I’m talking about when I refer to her laser gaze. She’s usually a very easygoing child but at certain times, she can nail you with a glance that makes it clear that you are not going to weasel out of anything until you’ve answered certain truth-seeking, inescapable “Sarah questions.”

Well, the laser glance was pointing in my direction and I was starting to feel just a wee bit wilted under its heat.

The spoon once again resumed its steady progress between her mouth and bowl but her gaze never left my face. I started to squirm. I knew the tough questions were coming.

She said, “I’m just wondering if you’re crying because Dr. Driscoll called. The last time he called and said I had relapsed, you came into my room and you had been crying. And now you’re crying again. Did he call?”

I said, “Sarah, have you been thinking about the scan results this weekend?”

She said, “Yes, I have.” (So much for the infinitely wise mom.)

I told her, “Sarah, I promise you. Dr. Driscoll did not call.”

She said, “Then why were you crying?”

I said, “Well, sometimes moms get a little tense when they’re waiting for certain news and that makes us cry.”

She put her spoon down. Tears welled up in her eyes.

I asked, “Why are you crying?”

She whispered, “I’m just a little scared, that’s all.”

My heart just broke for her. I stood up and enfolded her in my arms and said, “Baby girl, I’m so sorry you’re afraid. It’s going to be okay.” And we hugged and cried and made very good use of that Kleenex box in the middle of the table.

And now she’s gone up to the shower and I’m sitting here, shedding even more tears as I write about our conversation.

In a minute, I’ll go upstairs and help her dry her hair, and then tuck her into her sweet, pink bed where she will be diligently guarded through the night by her “attack dog,” Mr. Teacup Maltese.

As I tuck her in, I will pray that she will have sweet dreams and peaceful rest. And in my heart of hearts, I will pray that tomorrow’s news will give us reason to leave the Kleenex box unused.

And now fast-forwarding five years, here is that same young lady in rehearsal last night for our Easter drama.  What a joy to celebrate the miracle of resurrection and her miracle of survival.