'Bad news'

It started with a bump on Adam's left eye. It looked like it was just in his eye lid. That was about three weeks ago. We took him to his doctor who then referred us to an eye specialist, Dr. Debra Sherman. She thought it was probably a benign dermoid cyst and scheduled surgery for March 31st. She also ordered a CT Scan on Adam's orbital sockets to see what we were dealing with. It all seemed very controllable and planned out. She had also taken pictures of Adam's eye in her office. The CT Scan went very well. The nurses were great and Adam never flinched when the nurse put in his IV. He did cringe a little when the IV tape was taken off before we left. The CT Scan seemed to confirm what Dr. Sherman was thinking. It looked like a dermoid cyst.

The problem was that the bump on his eye kept growing. Adam said he didn't feel anything but he looked like he had been popped in the eye except there was no bruising. Adam has never complained about this thing and through all that was about to go down over the next 48 hours he only complained of being bored.

Martha and I didn't know if we were just seeing things but it seemed to be growing fast. Martha made another appointment with Dr. Sherman. She took another set of pictures. The comparison indicated that there had been significant growth. Enough for her to call her friend, Dr. Louise Mawn, an eye surgery specialist at Vanderbilt, to ask that she take a look. We found out later that Dr. Sherman had already guessed what was going on and had told Dr. Mawn.

On Wednesday, 3/12, we went to Dr. Mawn's office. She examined Adam of course, but what really hit home was the pictures from a couple of weeks prior with the pictures taken the day before. Looking back on it I can tell she was very concerned about what she was seeing. She didn't let on that she pretty much already knew, but she was very pro getting this thing out. She reviewed the pros and cons, but it was clear, Adam was going to surgery that day. She went on and on about how great Vanderbilt is for this kind of thing. Reassuring us that Adam was in the best place he could be for this kind of procedure. Looking back, it seems clear she was getting us ready for some really bad news. But we were still in, 'this is just a simple cyst that needs to be removed and everything will go back to normal land', I already miss that place very much.

He would have to get an 'orbital' MRI first. And she went ahead and scheduled a post surgery appoitntment with her colleauge, Dr. John Kuttesch, for 2pm on 3/13. We didn't really consider at that point what kind of specialist Dr. Kuttesch was. It's not that she didn't say 'oncologist' we just didn't connect it. I was thinking that must just be a precaution that Dr. Mawn was taking.

The worst experience for Adam so far was the MRI. The tech was not particularly great with getting the IV in as the nurse had been when Adam got his CT Scan. He had to 'stay still' for over one hour in this very powerful and very loud magnet. The Vanderbilt MRI staff weren't on their A game that day. Generally our experience with Children Hospital has so far been very positive (except for the fact that we hate to have to be there), most of the staff are good with kids and empathic toward families, but the MRI staff seemed more like a factory line, moving em in and moving em out.

The MRI completed, we went directly to the third floor of Childrens Hospital to get Adam into surgery. Still thinking that we were getting close to being done with this nuisance I was thinking about eating. Adam had been NPO since eating a poptart at 630am. Martha and I had had nothing to eat. I was starving and even thinking that the Taco Bell on the 2nd floor was looking pretty good. It took a little while to prep Adam. Adam was continuing his usual stoic thing throughout all of this. He got into his gown. He got in the special hospital bed for eye surgery. He watched cartoons. Several folks came by to talk and ask questions, mostly of the giving consent for treatment and family history type. Around 230pm Adam was taken back to surgery.

Martha and I went to get something to eat. Taco Bell was a disappointment but did the trick. Martha, being the smarter one, got a salad from the deli. We were almost done. Adam would be out of surgery and would spend the night on a '23 hour' stay. And then we would go home.

Adam's surgery went very well. The 'bump' came out fine. This was part of what we heard from Dr. Mawn in the post op meeting. What we didn't hear as well was that what she took out did NOT appear to be benign but there was nothing else she could really tell us. The tissue sample would be sent out to be tested. The pathology report would give us more information. And Dr. Kuttesch would tell us more specifics. Even then, though I heard what she said, it didn't hit home at all.

I had called my parents earlier that day and told them that unexpectedly Adam had to go into surgery and we anticipated he would have to stay out of school for a few days. I asked if they could come up and help baby sit. Of course, they were on the road within an hour of the call. By the time Adam was out of surgery and waiting to be taken to his room my parents were entering Nashville. I went to go meet them at home. Adam's nurse in the recovery area was great, as were the nurses up on the unit.

My parents and myself went to buy Adam some comic books and because he was still not in his room we went to get some pizza. After he got into his room we went over to park and go up. We delayed for a few minutes when a doctor asked us to give him a jump in the parking lot. His battery was too dead and would not start even with our help.

We went up, comic books and pizza in hand, and met Adam and Martha in his room. Adam was pretty out of it, but not enough not to be watching cartoons. He wasn't in a really chatty mood understandably. We hung out for a little while and then left them in peace.

The next day I went to join Adam and Martha to wait for his discharge. At about 1030am we left. We had an appointment with Dr. Kuttesch that afternoon at 2pm so we went home and hung out with Juju and Bear. At this point we were all assuming that our meeting with Dr. Kuttesch would be just a perfunctory meeting letting us know that Adam was ok.

We arrived at Vanderbilt Childrens Hospital at about 130. We went up to the 6th floor to the Child Cancer Center (not pediatric oncology). That was the beginning for me of what we were dealing with. Sitting and waiting I notice other families. Some of them were like us, probably just got diagnosed but looked very heatlthy. Others were is some stage of treatment. Partial or complete hair loss. It also struck me that clearly for many of these families this visit was routine, a part of their lives. They didn't look anxious or worried. This was just the way it is.

Adam's name is called and I have to go retreave him from playing with the video games. We are led to an examination room where we wait. The wait seems long but really isn't. Dr. Kuttesch, a short round man with suspenders and a big mustache, comes into the room and notices that Adam still has his IV from the hospital. We requested they leave it in so that Adam wouldn't have to get another stick. Dr. K seemed a little annoyed because he wouldn't be needing any more blood than was already collected at the hospital and they should have known to tell us that.

Dr. K introduced himself, sat down and spoke directly to Adam. He reviewed our family histories. Then he got to business. Dr. K said that he was the Cancer Doctor and that was what we were there to talk about. He said Adam's tumor was malignant and would require treatment by chemotherapy at the very least. The treatments will go on for a year at least. The type and intensity of treatment will be determined once he gets the full pathology report and once Adam gets a full body CT Scan and yet another MRI. Dr. K was kind and patient and repetitive throughout our meeting with him. As the information hit, and as we truly heard, Martha began to cry, I was still and Adam listened. The social worker, Cindy, also joined the meeting. She immediately started to tell us about the resources available; support groups, counseling, financial aid if one of us would have to quit work, help with getting Adam on Homebound status at school. She encouraged us not to let the Clinic become our whole life.

It was all too fucking much. Quitting jobs, homebound schooling, not having a life outside treatment. God Damn! I am sure from their perspective we are typical. F. Scott Fitzgerald was asked how he went broke, 'Gradually, then suddenly.' That was what it was like a trickle of awareness, then a deluge. As my own denial of the situation faded I stood up saw that Martha was sinking and went to sit by her and hold her. Adam had earlier said he was bored and wanted to go eat some treats and watch tv. We let him. But he had heard and would talk to me later.

Dr. K emphasized that we still didn't know a lot. We still didn't know what type of tumor precisely we were dealing with. He repeatedly told us about types and subtypes and how this would determine treatment.

We hadn't gone to Dr. Kuttesch for a routine summary of how Adam had no problems and could be on his way.

We went to Dr. Kuttesch becasue Adam has been diagnosed with Cancer and even though we are still looking for the precise type, this diangosis was not in doubt. Dr. Kuttesch is the Cancer Doctor.