While we were in PICU we were scheduled to visit with the oncologist that would be taking care of Angel BK. His name was Dr. Randall Olshefski. Dr. Olshefski was accompanied by Suzanne, the nurse practitioner that would be managing BK's case. We didn't like either of them in the beginning but I believe it was more because of the news we were being given than their actual personalities. Dr. O was very professional and very direct with little in the way of bedside manner.
He told us that they would do an exam on the tumor. I thought it was to determine the kind of cancer but that was not the case. They knew it was medulloblastoma based on his symptoms. In fact, after we arrived, they gave us a book about the disease. It was as if it had been written about our child's experience and symptoms. I think the examination and testing was to determine grade or stage. If they ever gave us a designation as to that, I don't remember what it was. They told us that our child had a 50-50 chance of beating the disease. I told them that we had someone else looking out for our child so his chances were higher than that. They just looked at me blankly. We learned that day exactly what would happen to our child in the days, weeks and months to come.
Generally, the first step in treating medulloblastoma, because it is a very aggressive form of cancer, is radiation. Our baby was under five so they would only do radiation as a last resort. Chemo would be the second wave after surgery. After he'd had some time to heal, he would be taken to the oncology floor, J5 it was called. He would first have a tube put into his chest through which he would receive all of the more than half dozen chemo drugs and other medications he would receive. He would receive a double lumen broviac catheter, a rubber tube with two separate ends inserted into an artery in his chest. That would be another surgery after his first had healed a bit more. After the insertion of the catheter, he would be sent upstairs and we would only periodically see Dr. Elton.
After a couple of days in PICU our baby was returned to his third floor room. He was visited after a day or two by two physical therapists. They were nice girls, and by girls I mean they seemed pretty young, but I hated it when they came into the room. They made my baby do things he didn't want to do. He didn't want to do them because they hurt. That made me mad. I didn't want him to hurt anymore. He was 2 1/2. He'd hurt enough already and he'd only just gotten started on this journey. They made him sit up on the edge of the bed. He cried. He was scared and held himself stiff. They continued to come to his room. I didn't interfere with his exercises. I refused to help them because I knew they wouldn't let me stop it and I wanted to do that more than anything else.
As soon as his body was ready for it, he was taken to surgery and his catheter was inserted. This was surgery as well but, after your baby has had his skull opened and part of his brain removed, everything else is easy. As I said, it was a double lumen broviac catheter. That means that it was Y-shaped. It had two ends that remained on the outside of his body and they merged into one tube that was inserted into an artery. A day after this procedure was finished, he was sent upstairs, to J5.
J5 was like a different world. The lobby of the floor was painted in bright colors with animals and trees. There was a large aquarium and an area for the family. This floor was set up for long term visits because many of the children and their families would be staying there for weeks at a time for periods of years. The floor was a series of hallways that formed a two rectangles that shared one side, if that makes sense. Each rectangle had a nurses station. The main rectangle was patient rooms. These rooms varied in size but each had a bathroom. The second rectangle housed offices of the nurse practitioners, a play room, a family room, showers and a hospice room. We were given a tour when we got there as well as a three-ring binder full of information about procedures and rules common to the floor.
We'd been in the hospital a couple of weeks when we had our first chemo. He got so sick. There is a procedure that they follow and drugs are given to keep children from getting too sick but he did get sick. He was given zophran and that did help. Just a couple of days after that first treatment, his hair started falling out. I laid in the bed beside of him was able to pull it out in clumps. It didn't come completely out at first, he lost great patches. He looked so pitiful. I would run my hands through it so it would fall out on the bed as we were watching TV. I just wanted it over with. I figured he couldn't look worse with it all gone than he did with it only partially gone.
We finally got to go home in late January. We'd been at the hospital for three weeks. We were thrilled to be leaving. It was the first time I'd been out of the hospital since we'd toured the Ronald McDonald house the day of his surgery, as they were moving him to his PICU bed. He left the hospital unable to walk, some but not all of his hair gone, but glad to be going home.
We were home one day when he spiked a fever. He was listless and didn't feel good at all. I called the hospital. They told us to take him to our local emergency room. Little did we know at the time that this would become so routine to us that we'd be ready for a two week stay in Columbus in under twenty minutes. Anyway, we took him to the ER. They conferred with is doctors at Children's and we were told he'd have to go to Columbus. We took him in our vehicle. They were waiting for us when we got there. He had an infection. Again, this would become second nature to us. This was our first time, though.
We were in the hospital for another week or so. He was put on antibiotics, of course. When I say antibiotics, I don't mean a z-pack. I mean he was on the hard core ones: Clendamycin, Gentamicin, and Vancomyacin as well as some I can't remember. I don't know what kind of infection he had, I'm sure they told me and I just can't remember. I just know we were back in the hospital for another few days.
When we finally got to leave the hospital, we were exhausted, of course. We'd been doing nothing but resting in the hospital, I mean, what else could we do? But, I think up until we came home at the end of the month, we'd been running on fumes, whatever adrenaline we had left and Coke. I remember running out to the store to get some milk and what-not when we finally got home. I pulled into the parking lot, got out of the car, and was overcome by this wave of desperate exhaustion. I just suddenly felt as if I'd been awake the entire month. I know it was mostly the relief from most of the stress and all of that but I didn't think I'd be able to walk all the way to the back of the store to get my gallon of milk.
We were home a couple of days when my baby, always a miracle and completely amazing in everything he did, got up and walked across the kitchen. We were surprised by that. We'd expected to have to physical therapy. It had been weeks since he'd taken a step. He was riding on a toy, got off and walked. I was thrilled. It was almost as overwhelming as when he took his very first step.
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