IN MEMORY OF NICKY
I wanted a baby very, very much. It was difficult for me to get pregnant so it was almost two years after I was married before it happened. I knew immediately. My cycles were like clockwork. I was late one day and I knew but I had to wait two weeks for the official word. That was the happiest day of my life. Unfortunately that happiness didn't last long for two weeks later, I started bleeding. I was told to get in bed and stay there, which was were I stayed until I was six and one-half months pregnant. Suddenly the bleeding stopped. I was allowed to move around and could enjoy my pregnancy. Once again that feeling of happiness was shattered. Two weeks later my water broke.
These were the days before sonograms, amino�s and drugs to stop labor. There was no way to stop it, so on November 30, 1966, at 1:19 a.m., I delivered a little boy. He weighed 3 lbs. 13 oz. I remember seeing the top of his head and thinking it looked like a Spaulding ball I played with as a child.
My OB was surprised that he weighed as much as he did considering I was only 28 weeks along. He didn't have much hope for him and said so while I was still in the delivery room. The hospital were he was born was not able to care for such a small baby, so he was transferred. They brought him to me on his way out giving me just a few minutes to say good bye. He was so small. I knew there was a very strong possibility of never seeing him again as I had to remain in the hospital for five days which was the norm at that time. What should have been a joyous occasion, became somber.
The next day Nick developed jaundice. He required three blood exchanges, then had a seizure. All I did was pray. I begged God to say my baby. All the reports I received were second hand since I was unable to go to him. When I was finally allowed to leave the hospital, I went straight to see him. He was in an incubator with tubes coming out everywhere. I was shocked at his appearance. There was a piece around his neck that kept him breathing. He looked like a chicken with no feathers.
The doctors kept stressing that I could have other children and not to get attached to him. They suggested that I not touch him for it would be harder when he died. Little did they understand I already was very attached and my arms ached to hold him. I scrubbed up and was allowed to touch my baby through two holes in the side of the incubator. As every mother believes their baby is the most beautiful baby in the world, that is what I thought. He had long eyelashes and perfect long fingers---finger nails too. That was the start of daily visits to him and church. Oh how I prayed. It was two weeks before the doctor would say he was going to make it. Needless to say I was ecstatic. My prayers were answered. I was allowed to hold him shortly before Christmas. Oh what a day! I sat for hours with him in my arms. It was evident he was a fighter.
With New Year's Day came another blow. On my usual visit there was a new doctor on duty. He told me that Nick's kidney stopped working and it didn't look good. Needless to say I was in shock. I decided not to get over emotional then but wait and talk to his doctor who was due back in two days. As soon as he came in I was there waiting for him. He was wonderful. He said the kidney had stopped working several weeks before and he didn't want me to worry. He said the other one had enlarged as it should have and everything was just fine. Nicky was sent home six weeks after he was born weighing in at a whopping 5lbs.
We settled in and I just loved being with him. He would smile and was such a pleasure. One day when he was 4 months old he wouldn't stop crying. I did all the things I was supposed to do but nothing made him stop. The third time I was changing his diaper I saw his testicle huge and purple. He had a strangulated hernia. The doctor managed to get it back in but he needed surgery as soon as possible. It was several days before all the arrangements could be made and in those days he was not allowed to cry or strain in any way. I slept on the couch with him in his carriage and rocked him all the time. He didn't cry once. He was admitted to the hospital and because of his kidney they wanted to do some tests first. He was put in the nursery. I wasn't allowed in there. They said it was for his good since I had a slight cold. I would go and stand outside the nursery and just watch him. He did cry then. I had an argument with a nurse for letting him cry but there was little I could do at this point.
One afternoon I received a call from my mother. She had gone to see the baby and found him asleep tilted back and being prepped for surgery. I rushed to the hospital to find out that he had cried so much that he now had three hernias and there was no telling which was strangulated. He now needed emergency surgery on all three. He was sedated and at 8:00 p.m. was taken to the operating room. I didn't see him again until 12:00 midnight when he was brought down. After arguing with the doctor I took him home two days later. No one could take care of him like I could.
Life settled down. The doctors wanted to keep a watch on him. Since he was premature he would do things a little slower then normal but the day came when I had to admit he wasn't progressing like he should. One doctor watched him sleep one day and told me he was going to be a hopelessly retarded and I should put him away. Of course this was totally out of the question. I went to the doctor that took care of him when he was born. He was very honest with me and told me that they did not know how he would progress and I had to do everything I could for him. He was then diagnosed with Cerebral Palsy. At ten months old, a blood test indicated there might be a problem with his kidney. More tests with the possibility of having his kidney removed. Thankfully the tests cam back fine and he was sent home.
By the time he was four he was diagnosed as a Spastic Quadriplegic. The tendons in his legs were so tight, he was unable to sit. He had surgery and was in a cast from his chest to his ankles for one month, followed by intensive therapy for another month. He had to stay in the hospital five days a week and came home only on the weekends. After this, life settled down for a while.
Nick started school and even with all his problems he smiled all the time. He loved people and always wanted to be the center of attention. He would make passes and propose to any girl that he passed. I remember a time when he was nine and had to go the hospital to have stricture in his esophagus opened. He asked six woman to marry him before he got to his room. He got away with a lot. He knew how to wrap a girl around his finger. My cousin would say if anyone else did what he did they would be arrested. Nick got such a kick out of it. He had the biggest smile and used it to his advantage. In school he was known as the Mayor. He needed to be in on everything.
Nicky was in a Saturday program at United Cerebral Palsy and one Easter arrangements had been made for is whole group to be brought to City Island for an Easter Egg Hunt in the park. City Island is in New York City, and is where we lived. The eggs were numbered and each number was for something at one of the stores within a two-block radius of the park. He was so excited that I had arranged this for them that he would not hear of not being allowed to participate since he wasn't feeling well. He went and found many, many eggs. He really had a great time. Two days later he was diagnosed with Hepatitis and didn't leave the house for the next two months. Somehow I felt he knew what was coming.
When he was 18 he was enrolled in UCP daily program. He was out of the house 6 days a week. Just the life he wanted. He hated to have to stay home. He had a very active social life. He went to sleep away camp two weeks every year. This started when he was nine. He would go away for the weekend once a month. This was supposed to be for me but we really knew it was for him. When he was with his friends he could do and talk how he wanted to and not have to watch himself. In this respect he was like any other boy out there, and he was all boy.
One time the Saturday program was treated by the Make a Wish Foundation to a day at Disney World. They chartered a plane for the occasion. Nick was picked up at 2:00 a.m and off to Florida he went. The woman that was responsible for him at Disney World told me the story of what happened that day at his funeral. It seems that the workers didn't know that the Disney employees would be taking charge of the group. Each person was assigned a child. The UCP program assigned this woman who supposed to be with Nicky all day.
Once at Disney World, everyone was busy getting the wheelchairs out of the busses and getting everyone settled. When she and her co-worker went to find their charges, Nick and another child were gone. They could not find them anywhere. They didn�t want to go to the Director unless they really had to. They thought they could find them and no one would know. After all, how far could two kids in wheelchairs go? These poor people spent the whole day looking for them and never found them. Time came for everybody to meet to leave. Walking towards the Director, aware they would now have to tell her the boys were missing, they saw Nicky and his pal coming from the other direction, laughing like crazy. Both had the time of their lives and never realized they had been missing.
Nick had a really big heart. One Christmas there was a tree at UCP covered with paper decorations. Everyone took some and bought what was written on it for people with AIDS. He brought home handfuls. I cant tell you exactly how many. He had me shopping for days. Hair brushes, powder, toothbrushes anything. I wasn't the only one, he got everyone in on it.
During Desert Storm, our cousin was in Iran. Somehow Nicky convinced his friends to write letters to him. He wanted his �Uncle Bo� to receive a lot of mail.
There was a Garden in Manhattan that had been started by a man Nick had gotten very close to. This man had cleaned up an empty lot and started planting. The Saturday program would go there and plant flowers and vegetables. There was no funding for this project so Nicky decided to start collecting money for the Garden. He got a coffee can and started asking everybody for money. He gave everything he collected to Mike for seeds and tools. This was my Nick. He made me so proud.
Suddenly Nicky�s eating began to change. He would get full fast and say �No more Mom, I've had enough.� He would cough a lot. He always had a lot of colds and would get better, but this was different. It was February and cold, but this would not go away. The doctor would give him something he would get better for a few days, then it would start again. His doctor said it was post nasal drip. So, OK, we listened to the doctor.
After a while I told the doctor, it just cant be post nasal drip. The doctor then says its allergies. So off we go to an allergist who does all the testing. More medicine. The tests are positive for dust and feathers. I scrub his room to make sure there's no dust. There are no feathers to get rid of. He gets better for a little while, then it starts again. The allergist says he needs to see an ENT. Off to another doctor we go. He says there's no problem and that its definitely allergies. This went on until November. His weight kept dropping and he wasn't eating well at all. He would eat just a little and stop. He said it was hard to swallow. I started chopping his food for him.
One Sunday he appeared to be sicker and I could see that he was dehydrated. I called his doctor who said to go to the hospital and he would order some tests. Finally. He had an X-ray done and told me he was constipated. This did not sit with me at all. I told him I wanted an esophageal swallow. After all he did have a stricture when he was 9. He said he didn't think it was necessary but since I was insisting he would order it. The next week he had the test and a shadow was seen. Nick was scheduled for an endooscopy. It wasn't until after Christmas that it could be scheduled. Nicky had gone to the gastroenterologist that was going to do the test and they hit it off.
I used to bake a lot of cookies at Christmas and he just had to bring cookies to the doctor and the nurses the day he went in for the test. This was Nicky. Every year he was my cookie tester but this year he just couldn't do it. I would break off the smallest piece so he wouldn't have to chew or swallow to make him feel that he was still my tester. That Christmas I had to puree his spaghetti and lobster on Christmas Eve for him to have his favorite food. Lobster. He adored lobster.
I was allowed to stay with him during the scoping and I will never forget when the scope came to this piece of flesh. It was just before his stomach and the doctor said he could not safely pass it and go into his stomach, so he would take a biopsy and wait to see what it was. Outside the OR the doctor told me that if Nicky was a drinker or smoker he would suspect cancer but since he had no risk factors he thought it would be fine and we could just remove it through the scope. In the meantime I was to puree all his food so he could continue to eat and once again, we went home.
One week later while I was at work, Nick�s internist called me. He said that the gastro doctor couldn't call me. The news was not good. Nicky had Cancer. He said that he knew of some doctors at Sloane Kettering Hospital and offered to set up an appointment to bring Nick there. It was the best cancer hospital in New York. My whole world dropped out from under me. I had to go home and tell him. I never felt so helpless in my life. I talked to him the way you would a little child, telling him that we would fight this. He would get medicine that would fight the bad guys in his body. We held each other and cried. Then we made a pact to fight this disease and win.
A few weeks later we had our first appointment. The first doctor we saw told me I shouldn't do anything, just let him go. Even today I feel this doctor looked at Nicks mental capacity as well as the wheelchair and felt it wasn't worth it. Well, he didn't know me! I asked for another doctor and setup an appointment for the following week. This doctor was much better. He had seen this kind of cancer in another cerebral palsy boy about the same age and said he could operate. It would be a huge operation and putting it mildly, Nicky was extremely upset. He begged me not to put him through it. So I asked the doctor how the other boy that had the surgery made out and was told he died a few years later. It was decision time. Do I put him through this for a few years?
The doctor said we could try something else but we had to fatten him up. Nicky only weighed about 70lbs and was dehydrated. We could put in a feeding tube (peg) for feedings and start radiation followed by chemo. The chances of recovery were almost the same as the surgery. So we made the decision not to do the surgery. The following week the peg was put in and he started radiation the week after that. He started to regain some weight. His days of going to UCP had stopped for a while. If he was feeling well he could go as long as the nurse was there for his feedings. When he finished the radiation he started the chemotherapy. This didn't go as easily. Several days after his first treatment he started running a temperature. He was admitted to the hospital for 20 days until his blood count came back up. The next week he was back for another treatment and it started again. He only took three treatments. His body couldn't take it. He had a tube put into his esophagus to help him be able to eat a little. He hadn't eaten in so long he was afraid to try. I would cut chocolate chip cookies (his all time favorite) really small and he would have to drink something after each bite to help it go down. It wasn't worth it to him. He went into remission for a few months. Unfortunately it didn't last long as he once again started to have problems. We went to his oncologist who said he was not in reemission anymore and I should sign a DNR. I signed it that day. I think the hardest part of doing these things was not being able to cry in front of him. I couldn't let him see how devastated I was. Nicky only lived a few weeks after that day. Once the cancer came back it spread quickly.
What We
Remember
Lives On....
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