July 20th -- A Very Bad Memory

This is not a happy memory, but I am going to write it anyway, because it is so significant in our lives that it bears remembering, and it is not possible to forget it.

Last year on July 19th, David and I accompanied Katie to the pediatrician's office on Bainbridge. I wanted her to have an x-ray, as she was having odd episodes of pain in her back and legs that didn't seem to relate to anything in particular. Katie had a very high pain tolerance, so this increase in the frequency and intensity of pain puzzled us. She had an attack while at the doctor's office. The doctor called Children's Hospital and ordered a scan for the next day, and ordered an x-ray for us right away. The x-ray showed nothing. This pediatrician is married to an oncologist, and the sadness in her face told me things that I did not want to know.

On the following day, July 20th, Gregg and I took Katie to Children's Hospital for an early-morning CT scan. Gregg and I had had a disagreement over this the night before; I had a bad feeling about this scan, and told him I needed his presence. He felt that I could do it myself, and while I had been on my own with Katie for countless scans, this one seemed different. I prevailed, and he agreed to come with us; David stayed at home. We got there for the first or 2nd appointment of the day, hoping to be able to get home early enough to still have some of the day to enjoy.

Administering the large cup of contrast dye through Katie's NG tube took time. We had given her some medication to help her relax for the scan, and she slept for a while as we waited in a windowless room for the dye to make its way through her system. After a while, we heard voices in the hall outside of our room, and heard familiar names (from the cardiology department) paged on the PA system: cardiac intensivists, an eminent cardiac surgeon, and others. We then heard some familiar voices nearby, all quiet, but in earnest. A staffer entered our room and said that he was very sorry, but there had been a "code" in the CT scan (a child had died while in there); they were preparing to perform (the first ever) surgery on him, right in the scan room. We would have to wait. I began to pray, feeling deep compassion for the family of this child.

We were given an update: they were finished, it had gone well, and they were going to clean the CT room in preparation for us. Three hours had gone by; we had taken turns going to the cafeteria for lunch, and to the restroom. Katie had been sleeping most of the time, and having some dreams/hallucinations.

When it was finally our turn for the scan, I did what I usually did: helped Katie up onto the table, helped her get comfortable and warm, donned a lead apron and held her hand while they scanned her. Then I gave back the apron, and helped Katie off the table, and out of the room. The doctor who read the scan had been called in especially to help us that day, and he was very solicitous, offering a soda pop and a wheelchair for Katie, and meal vouchers for us. We were a bit baffled by this, but perhaps not really. We were told to go up to the Hematology-Oncology clinic to meet with Katie's doctor, after she had a chance to review the scan.

We got situated in an exam room in the clinic, and waited. Dr. P. and Nurse S. came in, looking very grave. Dr. P. said, "I'm afraid I don't have good news for you, Katie. You remember I told you that I would never lie to you - your tumor is back." Katie, Gregg and I were shocked. Katie replied, "Then I'll have surgery." Dr. P. told us that it was not in a place where surgery could remove it. Katie cried and asked how this could have happened, and Dr. P. said that that is the bad thing about cancer; it breaks all the rules.

Our friends from Social Work and Childlife came and stayed with Katie for a few minutes, while Gregg and I met with Dr. P. and Nurse S. privately, and found out what was likely to happen, what they could offer in the way of help, and that they could not predict how long it would be. They called Hospice for us, and set up our case with them. We called my parents and asked them to go to our house and be with David. Then Gregg took Katie to the car, and I went to the pharmacy to await the new drugs -- ones that were supposed to help keep Katie pain-free, as the cancer took over her body, and eventually, took her life.

Some of these drugs are "controlled substances," such as methadone, and it took a long time to fill the prescriptions. I think I called my brother, sister and Stan to tell them the news while I waited. It was the only time that I have been tempted to scream at the pharmacy: "Can't you hurry? She has just been told that she's dying! I want to take her HOME!" But I didn't scream; I just lurked and waited impatiently, until they finally gave me the things we would need, and explained how to use them; then I hurried out to the car. I am so thankful that Gregg was with us that day; I don't know how I would have made it home without him. Katie had a (well-deserved & understandable) "meltdown" in the car, screaming, "I'm going to die! I'm going to die!" I broke down in tears at that point, and Gregg answered quietly, "Well, yes, you are." I sat with Katie and held her as she grieved.

A horrible, horrible memory. A year ago, today.