Daniel Alter

Information Journal Guestbook

Growing up, I was always the goofy kid. I had asthma and allergies, I was clumsy, and my depth perception basically didn't work. My little league coaches would put me in the outfield (where you put all the untalented players before kids could hit the ball that far) and whenever a fly ball found its way out, I would run to where I knew the ball would fall...and it would fly 30 ft over my head.

Worst of all, I had very strange headaches. Feel the back of your head and find the two bones that make a V. I would get blinding, incapacitating headaches between those two bones, lasting 10-30 seconds each. My nervous mother dragged me to see every doctor she could find and all came up with a different explanation (that surprising coincided with their specialty).

In July of 1997, two months before my 13th birthday and three months before my Bar Mitzvah, the left side of my body quit working. I would drag my left arm and leg behind me. My mom said it looked like I'd had a stroke. I remember trying to open a jar with only one arm because my left arm had no strength left.

On Sunday, July 20, my dad and I went on a hike through fairly flat ground with my Boy Scout troop. In three hours, I fell 5 times. And I didn't just fall, I collapsed. When a normal person falls, they stick out their arms, try to brace for the fall. Not me. I fell flat, like a mattress stood on its short edge. It turns out I'd been dragging my left leg and kicking the back of my right foot, causing me to trip. Afterwords, my dad took me to the emergency room to find and fix the growing problem.

An MRI revealed the worst, a brain tumor the size of a man's fist that had horseshoed itself around my brainstem, compressing it to a 45 degree angle.

Immediately the ER doc said there was nobody in town qualified to even attempt to help so he sent us to Texas Children's Hospital in Houston. My parents and I drove through the night and at about 7am, the Chairman of the Pediatric Neurosurgery Board at Texas Children's told my parents he was afraid to touch me, that there were maybe half a dozen surgeons in the world that would even attempt the surgery, and to take me home and hug me.

Unsatisfied, we went across the street to renowned cancer hospital MD Anderson. After many more tests, they told us that they had a surgeon on staff who might be able to help, but he was out of the country at the time and when he got back, if he didn't feel he could do it, he would refer me to his teacher, a man by the name of Ossama Al-Mefty, in Little Rock, Arkansas, of all places.

My dad said forget the student, we're going straight to the teacher. With that, we drove back home. In the mean time, we had dozens of friends and family members doing research on chordoma. We had doctors searching through textbooks, we scoured the internet, and a prominent attorney even called the Surgeon General on my behalf. What we found was interesting. In the early years of the internet, everything we found regarding chordoma was written by one man, Dr. Ossama Al-Mefty.

On Tuesday, my mom called his office to find that he too was out of the country. However, his nurse was the first person who gave us any hope. The next day, Dr. Al-Mefty called my mom and apologized for being out of the country in our time of need. Thursday morning my parents and I flew to Little Rock and after more tests, met with Dr. Al-Mefty at 5pm. He took one look at my MRI and said we were going into surgery the next day. He told us the tumor had wrapped itself around my respiratory nerve and that my next sneeze or cough could be my last.

The first surgery was to be trans-oral so he called an ENT to help. When the ENT arrived, Dr. Al-Mefty told him we were going into surgery in the morning. The ENT, Dr. James Sun, was stymied.

"Sam," he said, "I can't go into surgery tomorrow! I've got patients to see, I've got clinic, I just can't!"

"Jim, you're going into surgery tomorrow."

"Ok, Sam."

Now, to tell you how much power my doctor had...who was president at the time? Bill Clinton. And where was he from? Arkansas. Whenever Clinton made a speech, especially while campaigning, he flew an ENT out with him to keep his throat healthy and to make sure he didn't lose his voice. James Sun was that ENT. My doctor just bossed around the President of the United States' personal doctor.

That night, my parents and I went back to the hotel and went to sleep. Well, I did, anyway. My parents said they stayed up and watched me all night.

I don’t remember much of the following morning but I do recall lying in a gurney after being prepped for surgery with my parents and a Little Rock rabbi. I asked him if there was a blessing for pain. He laughed, saying no, there isn’t a blessing but there is a prayer, the Mi Sheberach, then he told me a story:

A teacher asked her students what G-d looked like. Well, said one boy, G-d has eyes because He can see everything we do. Right, said the teacher. And He has ears because He hears our prayers, said another little girl. Very good, said the teacher. What else does G-d have? And in the back of the room, a very small boy spoke up. G-d has hands, he said. Then the teacher looked at the boy with a puzzled look on her face. Doctors, said the boy. Doctors are G-d’s hands.

Soon after, they took me into surgery.

The tumor had eaten away the top vertebrae in my neck and without the mass of tumor to support it, my remaining vertebrae would not have been able to hold up my head. My neck would have snapped. Therefore, I had to have a halo. Basically a halo is a big metal contraption that keeps your head and neck from moving. If you’ve ever seen the movie Mean Girls (wow, I’m ashamed of myself for that reference), the antagonist has one after the bus accident. You are fitted with a metal vest (with fleece on the inside to prevent chafing) which connects to four vertical metal rods with connect to a metal ring around your head (hence, halo) which further connect to 4 screws which are drilled into your skull. The first part of my surgery, the only part I remember, was the doctors drilling the holes for the screws. I remember it because I was awake, intentionally. I don’t remember the reasoning, but it was important that I be awake for that. I was drugged up of course, but no matter how many drugs you’re on, it’s a bit disconcerting to hear the revving of a drill inches away from your ear and feel the pressure of the bit boring into your head.

I woke up 22 hours later in ICU, a thousand tubes protruding from my body, including a feeding tube and tracheotomy. I couldn’t talk and I remember being more thirsty than I could ever remember. My parents came in to see me and soon I drifted off back to sleep.

I later learned that in the time between scheduling the surgery and when it ended, 18 (remember this number) friends and family members from around the country flew or drove in to Little Rock to be with me and my parents. I also learned that after the 17 hour surgery, my doctors came out and told my parents I was doing well, that I would be out for a long time, and to go home and get some sleep. When asked, my dad said they would take a cab back to the hotel. Dr. Al-Mefty wouldn’t hear of it. He personally drove my parents back to their hotel.

That night, I was moved to a smaller room in ICU and watched over through the night by a nurse. I remember lying awake, watching a little tv, and talking to him, but not much else.

Later they moved me to my own room (6C). It was a double room but I had it to myself, which made it a lot easier for one of my parents to stay in the hospital with me at night.

The next few days are a blur. I remember receiving dozens of letters and get-well-soon cards. For the first day or two, I had trouble sleeping; I was very antsy, so they started me on physical therapy. About that time I developed Red Man’s Disease, a horribly inappropriate name for the allergic reaction to the drug vancamycin, which caused me to break out in red, itchy hives all over. I couldn’t eat nor drink anything, not even water. My doctors were worried something would get through the recently opened back of my throat and into the spinal fluid, causing spinal meningitis. I was so dehydrated my bottom lip split, permanently; I still have the white scar. My ENT came to see me and gave me these little-sponge-on-a-stick things, which I could dip in water and rub over my lips and gums. In reality I sucked those things dry just to get some fluids. Dr. Al-Mefty was not happy with Dr. Sun for giving me those, but Dr. Sun gave me a special place in his heart because of his own son.

Every four years, the Boy Scout National Jamboree is held in Washington, D.C. Only a select group of scouts are chosen from their local councils to attend on its behalf. I was selected to be a member of the representative troop; I was even appointed to a leadership position. The morning I went into surgery, my troop flew to D.C. for the Jamboree. Dr. Sun’s son was also selected to represent his local council and was able to attend the Jamboree. That connection allowed Dr. Sun to empathize with me. He even got President Bill Clinton to write me a letter, personally signed by the President. I have it in a folder at home.

In the next two weeks, I continued physical therapy and was able to get out of bed and walk around. At first they gave me a walker but I found that too slow. I quickly progressed to a wheelchair, which was great because whenever I got tired, I could turn it around and take a seat.

During that time, they moved me from UAMS to Arkansas Children’s Hospital. I remember the ambulance ride. Since the surgery, I’d been communicating with a white board and marker. At one point, they gave me a little boxy machine with a 3 inch tube coming out. When I hit a button, it made a noise. If I put the tube in my mouth and hit the button, I could talk. All I had to do was form the words. It worked well enough, but I sounded like a mix of Darth Vader and a computer voice so I was hard to understand. Amazingly, my little sister Devon (10 at the time) understood every word I said. It was a neat device but it tired me out very quickly.

One of the many toys and doo-dads people sent me was a rubber snake, maybe a foot and a half long. For whatever reason, someone had placed it on a coat rack or one of the IV or feeding tube machines. One day, Dr. Al-Mefty walked in, saw the snake, screamed, and ran out, slamming the door behind him. Apparently, he was afraid of snakes. He refused to come back in until we’d put the snake in a bag and tossed that into a closet. It was hilarious, especially to a 12 year old.

They scheduled my next surgery for about 10 days after my first. At one point, a well-meaning social worker came in with what looked like a voodoo doll in a hospital gown. She explained to me what tubes the doctors were going to put in (catheters, IVs, etc) and asked me to point to exactly where they’d be placed. I played along but the whole time I was thinking, Really, lady? I’m lying in a hospital with a thousand tubes coming out of me already. This is nothing new.

My second surgery lasted about 13 hours and went in behind my right ear. When I came out, they told my parents I was doing great so they were going in again the next day. All I remember was being hooked up to a morphine drip. The third surgery lasted 6 hours (17+13+6, remember this) and was a neck fusion. They took two floating ribs from my bar and fused them to my vertebrae with two titanium robs and a number of titanium screws. The orthopedic surgeon, Dr. Pait, had developed a new type of neck fusion, of which I was the 10th person in the world to receive. In a traditional fusion, the screws and screwed in from behind, without a nut on the inside to hold them in place. Dr. Pait’s method reversed that. The screws pointed out, which allowed them to tighten them in place with a nut.

I came out of that last surgery with a neck brace instead of a halo. A few days later, they removed my feeding tube and finally, after 17 days without food or drink, Dr. Al-Mefty said I could have clear liquids. My first question?

"Are sodas clear liquids?"
"Yes," he said.
"What about the dark colored ones?"
"Yes, he said with a laugh."

And there you have it. After 17 days without food, of watching and listening to my family and friends eat 3 times a day around me, the first thing I put to my parched lips...was a Dr. Pepper. It was glorious.

The next few days run together. I remember eating, physical therapy, and watching tv.

To be continued...