On a rainy, late August night in 1975, my first son Anthony Angelo, "Little Tony" came into the world. He was my parents' first grandchild and my grandparents' first great-grandchild. Little Tony was a good baby, quiet and calm. Right from the start he had many health problems, though none were considered very serious. It seemed as though he always had a cold or an ear infection.
My husband worked long hours at the time, so Little Tony and I spent lots of time alone. I thought that I had found my calling in life....motherhood.
In March 1977, Tony went into the hospital to have tubes put in his ears. The pre-operative chest x-ray showed a small spot on his lung so surgery was cancelled. The doctor said it was congestion and sent us home. About 6 weeks later, he woke up one morning and was having trouble breathing. By the next day, he wouldn't sit up or stand, he would only lay on the floor. A trip to the pediatrician indicated pneumonia and he was admitted to the hospital once again. After about 2 weeks of treatments to which he didn't respond, the doctor suggested exploratory surgery. A tumor was found completely surrounding his lungs. It was a rare childhood cancer called Burkitt's Lymphoma. They removed as much of it as they could, and told us that we would have to take him to Cleveland Clinic for extensive and aggressive treatment. I knew instantly that he would never make it that long.
The day after his diagnosis, he was not expected to make it through the night. He did, only to go into cardiac arrest the next morning. Efforts to resuscitate him were successful. Two days passed with him in a coma. The nurses told me he couldn't hear me, but I know that when I spoke to him his heart rate went up and his eyelids would flicker.
After spending 3 days at the hospital, I decided to go home to shower and change clothes. The nurses assured me that he was stable. Less than 1/2 hour later, when I got to my house, there was a message for me to get back to the hospital. It was over, I had lost him. I had never felt such despair!!
I never thought I would live through it, but I did. After a miscarriage, an ectopic pregnancy and 3 years of hoping, Michael was born on 4/9/81. He was a difficult baby, rarely sleeping, always crying. He turned into a very smart toddler and he was the light of my life. In April, 1984, Mike was joined by his brother, Matthew.
At age 3 1/2, Mike was diagnosed with primary oxalosis, a metabolic disorder of the liver, which results in kidney failure. A year later, Matthew received the same diagnosis.
Through diet and medication, both kids were kept relatively stable. They saw their nephrologist several times a year, but except for the many pills they took each day, it was easy to forget they had such a serious illness. They hardly ever even had colds! We did know, however, that if problems were going to occur, it would probably be when they were in their teens.
In October 1991, after a bout of flu that left him dehydrated, Matt went into total renal failure and started dialysis. He was 7 years old. After being on the transplant list for ony 7 weeks, Matt received a liver/kidney transplant. He has had no major complications and today is the picture of health. He is 14. Mike stayed relatively stable until Dec. 94. Routine blood tests showed that his kidneys had almost completely failed and he, too, began dialysis. The dialysis routine is very grueling especially for a 13 year old. Four 4-hour treatments a week left him feeling sick and weak, but Mike tried to keep up with his school work as best he could. And his grades never suffered.
Mike went on the transplant list in February 1995. Our lives revolved his dialysis schedule as we waited for that phone call that would save his life.
By January 1997, Mike still hadn't been called and his health was rapidly declining. He wanted to get his life back to normal, back to being a teenager. In March, he was unable to walk and needed a wheelchair. The doctor suggested we put him on the list at a different hospital, and then admit him to the hospital. Being an in-patient would raise his status on the list, increasing his chances of getting organs.
After a month in the hospital, Mike got the call that organs were available. He was life-flighted to a hospital about 300 miles away and taken into surgery at 2am. At about 10am, the surgeon's assistant came out and informed us that there was a problem. The new liver was not functioning. It was imperative that they get another liver as soon as possible. Without even closing him up, they took him to intensive care and a national call went out for another liver.
Although, he was heavily sedated for the most part "out of it", because they didn't want him to move around, Mike opened his eyes and looked at me a few times. He was even able to communicate to me that he was in pain. I'll never forget the fear I saw in those beautiful blue eyes.
Another liver was located and Mike went back into surgery. We got progress reports every two hours. Everything seemed to be going well. We were expecting another report at 8am, and no one came out to talk to us. At 8:30, a nurse came out, her face white as a sheet, and said "He's not doing well. He's fighting, but we've been coding him for an hour." Ten minutes later the whole transplant team came into the waiting area, and the head surgeon simply shook his head and said, "I'm sorry."
I can still hear the screams of my husband and my other son. Matthew's deep, heart wrenching sobs will stay with me forever. As for myself, I was in shock. I just remember saying over and over, they're wrong, it's a mistake, they're lying to me. If this is some kind of joke, it's not funny!!! HE WASN'T SUPPOSED TO DIE! THIS TRANSPLANT WAS SUPPOSED TO SAVE HIM!
Mike has now been gone a little over 18 months. I still miss him just like I did the very first day. I still hear him call me, I see his beautiful smile that lit up my world. He and I were very close. He had a unique sense of humor that could always make me laugh. Part of me died the day Mike died. All I do now is go through the motions of living. Just waiting for the day I join him.
You can send email to Karen at: [email protected]
anniversary date 7/12/77 & 5/10/97
date of post 11-22-98