remission re·mis·sion (rĭ-mĭsh'ən) n.
1. Abatement or subsiding of the symptoms of a disease.
2. The period during which the symptoms of a disease abate or subside.
Tomorrow, I'll wake my 10 year old daughter before the sun comes up, we'll skip breakfast, get dressed and leave the house for a trip that we make every October. This is our 6th year, and the annual pilgrimage will continue until she is 18, because Gracie is surviving kidney cancer. She is in remission.
I still feel compelled to update her blog (www.caringbridge.org/in/gracieshopshire ) every year. I do it because when we were first given the diagnosis, I stayed up all night desperately searching for information, answers, and hope. I peered through a cyber window into other families’ lives, and got a crash course in pediatric chemotherapy, radiation, blood counts, side effects, and the value of a second opinion. I also learned about the hope of remission and the possibility of recurrence. I studied long entries explaining every detail of treatment and progress, and I was stunned by the simple entries of surrender when hope was gone and a child was lost. It numbed me to read about children who got well, only to be betrayed by “remission” months or years later. I imagined going home without Grace, and a crushing fear squeezed the air from my lungs. But this is not what our doctors told us to expect. Although our medical team would not give me the comfort that I wanted (You’re baby is going to be OK), they were hopeful.
Our journey had begun abruptly only 2 days before, when I had a slight suspicion that something was wrong. Our pediatrician thought Gracie might be constipated, but took an x-ray just to be sure. That X-ray – that doctor saved her life. Within 48 hours, they had already removed the tumor – and a kidney. What had originally been innocuously described as a “softball sized soft-tissue mass”, was in fact a malignant cancer the size of a football, and it had already completely consumed one of her kidney’s.
Was it treatable? We wouldn’t know until we got the pathology report back. So we sat by her bedside, paced the halls and slept in 20 minute increments for 3 days. Finally, we were called into the conference room. I’d seen several sets of parents go in before us, and each time they came out looking shaken and disheveled, clutching bits of overused tissue in their hands. I realized that good news can be shared in the open places, the regular rooms. The serious stuff was confined to that little conference room. Now it was our turn. The room was bare except for a few hospital chairs, a small coffee table and the box of tissues. I wanted to run. I could hardly hear over my own heart pounding as I waited for the verdict.
There was good and bad news. I heard: “favorable histology” – that means this type of cancer usually responds well to chemo. (USUALLY??) The bad news: Stage 3. Found in lymph nodes in other areas of her body. Will require more aggressive treatment. (lymph nodes, I knew that was bad.) More good news: “believe they have removed the entire tumor and it remained encapsulated – so hopefully no cancer cells released into her blood stream during surgery that could travel to her heart, lungs, or brain. Oh. I was mildly shocked by that “good news”. I thought I was a “worst-case scenario” kind of mom, and yet I had not thought of that devastating possibility on my own.
Now with the tumor out, I was handed a 3 inch thick binder that detailed Phase 2 of her treatment. I wanted to hand it back and explain that I was really not the right kind of mom for this. I couldn’t do needles and I really didn’t even make sure they brushed their teeth every day. Wading through months of medical protocol was way out of my league. They must have super moms for this level of crisis.
The information kept coming. Radiation and Chemo together for the next two weeks, and then regular doses of Chemo for 6 months. She’d be put under general anesthesia for every radiation treatment (10 days in a row), to keep her from moving. And they wanted to start yesterday. That jolted me out of my stunned paralysis. Were they insane? She had just barely been wheeled out of the operating room! Starting now violated every instinct I had as a mother. But, I was told that this protocol had an 86% success rate, and the voice controlled by my right brain surrendered and signed the papers. Later that evening I held Grace in her hospital bed as a nurse in a hazmat suit poured the poison into her veins that we trusted would save her life.
It's a longer story, but I’ll summarize. She made it through. For the next six months we tiptoed through the treatment minefield with only minor complications. Oh, we saw the effects of chemo and radiation: Fatigue, nausea, depression, hair and weight loss, and some fine motor skills gone. But for our efforts, we were rewarded with one coveted word: Remission. I didn't like that word. It sounded tenuous and temporary to me, like saying, “it’s under control for now.” I wanted to hear “annihilated”. As in, “Mrs. Shopshire, we have annihilated your daughter’s cancer and it will never return.” But I settled for remission.
We passed the critical five-year mark last October with one little hiccup. An error in the lab indicated that her blood counts were dangerously low. I knew it wasn’t good when the actual doctor was on the phone with me later that day leading with, “I don’t want to alarm you, but….” Too late, already there. I was not prepared for that. After five years, my paranoia had lessened a little. I had finally stopped seeing symptoms in every stomach ache, fever, or common cold. But the possibility of starting over again was overwhelming. All we could do was wait while the tests were redone. They came back clear. We had maintained remission.
So, tomorrow we’ll spend the better part of the day waiting in diagnostic rooms while the technicians search for signs of cancer. We’ll also have her heart tested to see how it is holding up to the chemo that we now know damages heart valves. She’ll complain about doing the blood work and then we’ll meet with her cancer doctor. We’ll visit all of the nurses that we have gotten to know, and we’ll drop off the toys we have collected to fill up the “treasure box” for the kids who are still in treatment.
When it is all over, Gracie and I will head to the Pancake house and break the fast that seems to be the hardest part for her! And I will come back and update her blog. Because if any other family is searching for hope by Googling “kidney cancer” in the middle of the night, I want them to find us. I hope they will glance through the window of our experience and be encouraged. My little girl is alive, and this cancer can be annihilated.
an·ni·hi·late
.
1. to reduce to utter ruin or nonexistence; destroy utterly: The heavy bombing almost annihilated the city.
2. to destroy the collective existence or main body of; wipe out: to annihilate an army.
3. to annul; make void: to annihilate a law.
4. to cancel the effect of; nullify.
5. to defeat completely; vanquish: Our basketball team annihilated the visiting team.
