A View From A Very Different Place.

I took a reluctant and sleepy child to Children's for the day yesterday. She had to do a Neuro Psyche evaluation. They are trying to figure out, what, if anything was done to her brain during this process.

Go figure, radiation and chemo into your brain does not always create the best result for learning ability. I wonder why that would be? Anyway this is the second. There will be another one in about 18 months.

I must not have gone on the first one. I do not recall spending endless hours in the waiting room. Don't be mistaken, this is a great place to wait. It is in the new wing and all the walls are such a soothing color of hospital white, not quite white with lots of colored fish.

I was struck by the difference in the two waiting rooms. At Hem/Onc the kids are bald, and sick and carry around feeding tubes. They are generally quiet. The parents are accommodating and worried. There are some upset parents but generally children are treated with care and concern. As we all sit there we all know that we are fighting a mighty battle. Our tools are few but we use them with gusto. There is a lot of sharing between parents. Parents have spent time with each other in the waiting area, on the floor and in the cafeteria. There is sense of belonging, a sense that we have to support each other because no one else can understand what we go through.

Parents come into the psych waiting room and they are very much alone. The child looks normal but you know that they would not be sitting and waiting if there was not a problem. Not in the middle of the day. They seem lost, don't talk with each other and have that " This is overwhelming" aire about them. Lots of short tempers and lots of child "management".. Joel was there yesterday. He came in and went straight to the video game machine. He looked at his selection, hooked it up and then began to play. His father stopped him and asked that he look at him. Then the dad said,

Now, Joel , Dr. X will be out soon. When he comes out and it is time to go in to see him I don't want to hear from you: Let me finish, I am almost done, I want to get to this last place, just a minute, Can I have 5 more minutes." Joel agreed. Father was happy and then Dr. X came out. Joel was told it was time to stop and he said: May I have more time Please." The father had that look on his face. The, "I can not win, no matter what I do or what I say"look. Joel had not violated his terms of play. Now this is a child that would make a great lawyer.

Shame, I felt shame in the room as the parents trapesed by with surly children. If felt frustration as they tried to cope. I felt a certain amount of despair.

We all have children in trouble in one way or another. No one is there because it is a fun place to hang out.

I think Hem/Onc is running on Hope. Hope for a cure, hope for no sideaffects, hope for a good future for the kids. We live with uncertainty but it is an uncertainty that can keep be measured and test and counted in some way. In the Psyc department there are no real measures, not way to tell if things are better or how they will progress. The Mind is such a strange part of our body.

I am glad I spend more time in Hem/Onc than Psyc. Who ever thought that would be the case.