I have been terrible at updating on how Danny is doing. I really, really need to get back on Caring Bridge, and I hope to do so tomorrow. (Of course, I have been saying that for a couple of weeks, and still haven't done it, but maybe putting it in writing will help.) Anyway.
Danny's three year post end of treatment MRI in January looked good. No evidence of disease. And, after three years of good scans, I had gotten rather complacent. That all came to an end on March 15th, when he had a seizure at school.
Ironically, at the time I was at my primary care doctor's office, cell phone turned off, telling my doctor how well Danny was doing. My doctor had lost his two-year-old daughter to brain cancer some months earlier - yet another irony.
Since the school couldn't reach me, they called Danny's brother Henry, who was at work. Normally Henry, who often works in construction/outdoors, leaves his phone in his car. That day, he actually had it with him. Also normally, he doesn't answer numbers he doesn't recognise. That day, he did, thank God. He ran to his boss's office, told them he was leaving, and headed to the hospital. He got there right around the same time as the ambulance. It was a very good thing, because it is a military hospital, and I keep Danny's military ID with me. Henry knew their father's SSN (Danny didn't), and that number was needed for them to be able to, not only treat Danny, but find his records, etc.
Meanwhile, I left the doctor's office, and went to Danny's school to pick him up. He wasn't there waiting for me, as he usually would be. Then I turned on my phone, listened to my messages, and headed to the hospital as fast as I could. Right away I knew it was a relapse.
They kept him at the hospital for a few days, long enough to determine that it was, in fact, a relapse. Same cancer as before, but in a new, more difficult to treat, form called leptomeningeal dissemination. Which means not a solid tumor, but cells spread all over his brain and spine in a 'sugar coating.' Very, very, very bad news.
His doctor decided not to start any treatment, because she wanted to get him into a clinical trial, which would hold the most hope of helping him. I knew without her telling me that his chances of long-term survival were essentially zero. With a clinical trial, there is normally a 'washout' period for chemo of several weeks. They want to be sure that whatever results they get are from their trial, not from previous chemo. So, no treatment while we waited to hear from two different trials. They totally took their sweet time. Dr. W called and called and called, and kept getting the run around. It was unbelievably frustrating.
And, because he wasn't getting treatment, we watched Danny deteriorate before our eyes. He got weaker and weaker and sicker and sicker. He didn't have seizures because he was on medication, but it was horrible watching him get worse. In less than two weeks, he collapsed right in front of me, and became unconscious and unresponsive. We rushed him to the ER.
He was admitted to the PICU, and his doctor started a large dose of steroids, to reduce the swelling and inflammation in his brain. Over the course of about a week, he started to come back to us. Not before having a cluster of seizures, which meant a lot more seizure medication on top of the steroids. First he opened his eyes and started looking at us. Then he became able to respond, at least some of the time, by nodding or shaking his head. Then finally he started to talk.
Dr. W and I decided we couldn't wait to hear from the trials any longer - there was no real choice but to start some kind of treatment. She wanted to do two cycles of a drug combo he had had before. I was skeptical, because presumably the cancer cells which had been lying dormant in his central nervous system for three years were the ones that had been resistant to that chemo. But she said that, in the three years of lying dormant, said cells would have mutated, and might now be responsive to the chemo. It was what the other oncologists she had consulted with were recommending.
So he started getting that chemo as an inpatient. I honestly didn't think he would ever come home from the hospital, he was in such bad shape. And the steroids caused him to be furious all the time, especially at me. That of course made everything worse. And he couldn't walk, felt awful, and was as uncooperative as possible. Worse, because he is over 18, when he, for instance, refused medication, they had to honor his wishes. It was totally unlike him; he is usually very cooperative. Steroid again.
Things didn't turn around until he was told that he had to do certain things to be able to come home, and he - eventually, and not without a lot of anger and refusals - started to do them. But the day he was to actually leave, he was so weak and sick, I didn't think it would happen.
But he finally managed to get dressed, get in the wheelchair, and get in the car.
Once home, he lay on the couch and then, once we got it, the hospital bed (bedrooms are upstairs) and mostly slept and ate, and ate, and ate. Steroids cause hugely increased appetite. Then, oh so gradually, he started to get a little better. He sat up in a chair instead of lying in bed. Then he started playing computer games. Started walking more. Started being able to go upstairs, and then refused to sleep in the hospital bed. Big relief to me, because I had been sleeping on the couch near him.
All this while he had been going through cycle one of chemo, and then started cycle two. Dr. W had told me that, if the chemo was working, we'd be able to tell because she would reduce the steroid dose. If he got worse, the chemo wasn't doing anything. If he stayed the same or got better, the chemo was helping. Well, he clearly was getting better and better.
So that's where we are now. This coming week is cycle four of the second four-week cycle of chemo. He is now almost back to normal. His balance isn't good, and he is slow at everything (not to mention swollen face, weight gain, and bad acne from the steroid), but otherwise he is back to himself. He is now getting one steroid pill per day, down from four when he started.
Last night, his school held their awards banquet for the sports team. I had gotten an e-mail asking me to bring Danny if he was able, because they wanted to give him the 'Heart' award, for bringing the community together. This, in spite of the fact that he hadn't been to school since the end of March.
His school (small Catholic school) has been so wonderful, and so supportive of him and of our family. I can't say enough good about them. I was touched that they wanted to give him an award, and I knew he was well enough to come. When his name was called, the entire room erupted in applause, everyone stood up (except me - I was crying, of course), and the kids all yelled his name over and over like a cheer.