Aug 15, 2009

Twelve years ago today...

We kissed our four year old daughter Sara goodbye and watched them wheel her off, teddy bear in hand, for surgery. She was pretty dopey, whether from medication given her to make her relaxed or from the early hour, who knows? At any rate she didn't cry or fuss, she just went quietly.

We went quietly, too, to the waiting room. Quietly outside, that is, not so quietly inside. While I cannot speak for Tim, I wanted to throw myself down on the ground and have a temper tantrum. It wouldn't have changed anything but it might have made me feel better! They had warned us that we were looking at what could be a seven hour wait. They promised to call regularly to the waiting room to update us.

Two weeks before, on her dad's birthday, Sara had sat straight up, pointed to the back of her head, just above the nape of her neck and said "my head hurts right there." She said it without fanfare but something caught my attention. The statement was so deliberate and she was so precise in her indication of where it hurt that I parted her hair to take a look, thinking that she might have bumped her head, but there was nothing to be seen. The next day she started vomiting. Aha! This was obviously a virus of some sort. The next day the pain in her head seemed to intensify so that she was almost screaming. Sara had always been a bit dramatic. Nevertheless it was enough to prompt me to take her to the pediatrician the next day where they hypothesized that although her ears weren't red, perhaps she had an ear infection. Take these antibiotics, give us a call in a few days if she doesn't improve. Three days later I was back. I needed to be patient and allow the medications time to work. No...there was something different. At this point I was not only a midwife, I was a mother of five, our oldest being nine. I knew ear infections and this wasn't an ear infection. But I duly trotted home, to be patient.

Two days later I returned. The headaches were not constant...they came and went, usually coming when we were at home and being better by the time we got to the doctor's office. Worse in the morning, they were intense, prompting hysterics from Sara. After a while she would vomit. Perhaps from being so upset? Then she would act somewhat dizzy and sleepy and nap. Often when she awoke she was better. But the headaches always returned. It might take eight hours, it might take three days--but they always returned. When I described her symptoms I was told that little children are not always accurate when they tell you how they feel. Although Sara was unfailingly persistent that her head hurt "right there". she was likely really meaning her ears hurt. Or maybe her throat? Maybe she had reflux. At any rate they were sure that there was noting seriously wrong with her. The symptoms that I was describing matched that of a concussion, had she fallen or been hit by anything? The same symptoms could be as severe as meningitis or a brain tumor they shared, but they knew that this wasn't either of those--she simply wasn't sick enough. Besides, she was balancing well and performing all of the neurologic tests with ease.

I decided that this was allergies or a virus and that Sara was merely being dramatic and I was merely being paranoid. Then one night as I sat up with Sara while she cried and writhed in pain, I picked up a copy of the Reader's Digest that was sitting on the table next to me. As I flipped through the magazine my eye was caught by a quote in an article by pediatric neurosurgeon Fred Epstein. He counseled parents that if their child's symptoms did not match what they knew about their child and their doctor was not concerned, to insist upon further testing. This affirmed me in my concerns and I decided to continue seeking answers.

Finally I think that finally they simply grew tired of dealing with me at the doctor's office. They referred her to a pediatric neurologist. I could hear the primary doctor making the appointment in the next room, "No, I really do not think that anything is really wrong but this mom won't leave us alone!" The appointment was for the next day. That evening Sara had the worse headache ever. I called her pediatrician's office and asked to speak with the doctor. When the doctor came to the phone I told her that Sara needed to talk with her and I held out the telephone to Sara. When the doctor heard Sara screaming in pain she was aghast, asking "is it always like this?" Yes, I told her, reminding her that I had described severe pain. "Take her to the emergency room right now!"

I took her to Texas Children's Hospital. Four hours later we were on our way home. By the time we were seen, the headache was gone. They had found nothing wrong with Sara, they didn't even find cause to do any tests. They shrugged their shoulders and said that maybe the appointment with the neurologist the next day would be helpful.

I went home and started the prayer chain at our church. I asked for prayer that she would show the neurologist every symptom that I was seeing. Someone asked why not just pray that her head would stop hurting? I answered that I did not know why, I simply felt that we needed to know what was going on.

By the time we reached the neurologist's office, Sara could not stand up, walk across the room or say her name. Having devoured an arsenal of medical books trying to figure out on my own what might be wrong, I had familiarized myself enough with the terminology that although I am sure that they had no clue that I understood what they were saying it was clear from the conversation that the neurologist was having with the residents that trailed behind him, that they were suspecting a tumor--to the point of hypothesizing where the tumor might be. They sent us back across the street to Texas Children's where a CT scan was done, and a tumor was indeed found.

Two comments amazed me later that evening as we waiting in an exam room in the emergency room waiting for a bed to become available upstairs. (The exact room where 24 hours before we were told that nothing was wrong.) First was one of the doctors who had examined her the night before saying "wow, and there was no sign whatsoever, who would have thought!" I had spent close to 40 hours in doctor's offices and hospital waiting rooms over the past two weeks and yet they felt there was "no sign " of a problem despite the fact that I had told them, over and over of my concerns. The second comment that struck me was the neurologist, as he was sharing the news, saying to me how very devastating this must be for me to hear, as a parent. Devastated? I felt like dancing! Finally, finally, my words were being heard, my concerns being addressed. Finally we had an answer and with an answer, we had direction we could take to fix the problem.

Three days later, after a round of high powered steroids to help differentiate between the tumor and the brain surrounding it, they wheeled her off for the seven hour surgery. It had only taken two weeks to get to this point, but it felt like an eternity. It continued to feel this way as we waited from one precious phone call to the next from the operating room with our hourly updates. The moment that we got to see her in recovery was when time really did stand still.

And twenty-four hours later Sara was demanding "and don't forget I like pepperoni on my pizza!"

We had a few scares before we started to breathe easier. A few days after she went home we had to rush back for suspected meningitis. Then we came perilously close to having to have a permanent shunt put in her brain. We learned that there aren't always straight answers, even medical professionals will answer according to their own perspective. When we asked if the tumor was malignant, the oncologist said "absolutely!" (He looks for cancer and this was it!) The neurosurgeon scoffed and said "no way!" (His attitude was that the tumor was gone, not a problem, no need to be concerned about anything.) From the neurologist we got what we now know to be the most accurate description. It was a malignant tumor that acts benign. But we made it through, and started on the regular visits to the neurologist, first every month, then every three months, then every six, then yearly.

Then, two years ago, she graduated. No more trips to see Dr. D. On her last visit to him he lifted her long blond hair with one hand and traced the train-track scar that runs from midway up her neck to the crown of her head and sighed that she would never be able to wear her hair up in a french twist due to the unsightly scar. I told Sara that she had better wear her hair up, that scar is nothing to be ashamed of, it tells the story of a battle fought and won. It is also an ever-present reminder of God's faithfulness. Many little girls with similar scars never get the chance to wear their hair up. Wear it up and flaunt it in celebration!

We are now two years post "graduation". Last year I think we forgot. I actually think we were on our way to Idaho to pick up goats! But this year I remembered and decided to share the story in thanksgiving of the life that God gave, and the life that He preserved.


Anonymous said...

side-way french braids show off her scar really well!! We love you, Sara!!!

alani said...

Wow! What a story! Your persistence in your motherly instinct proved right. Alot to be thankful to God for.