Caring for your children in general can be very hard. Most parents worry about keeping food on the table and a roof over their heads. Parents also hope that their kids will make the right decisions when it comes to making friends. I can tell you with all that concern that we have as parents, taking care of a child that has had health problems only adds difficulty. I have had three different occasions where caring for my son was the only thing I could do!
The first health issue my son had started in January of 1993. My son Thomas woke up one morning; his eyes were swollen and so were his little hands. His eyelids looked transparent or almost clear. I loaded him up in the car with the diaper bag and his toys. I took him to the emergency room at Martin Memorial Hospital in Stuart, Fl. The emergency room doctor came in and looked at him. He asked me if there was anything different that I had given him to eat like nuts, or if I had done anything differently, like changed laundry detergent. I told the doctor the only thing that was different was the new carpet in the house. The doctor told me that he must be having an allergic reaction to the carpet when he is crawling on the floor. The doctor gave him an antibiotic and told me to go to my family doctor if this did not work. The medication did not work; it really seemed to make it worse. I gave him the medicine everyday at 10:00 a.m for an entire week. His whole body was swollen. When I would touch him my fingerprints would stay on his skin. I knew something was not right.
After a week, I took him back to the emergency room. This time they took blood and ran tests. I was a nervous wreck! I paced up and down the hall holding my son; he was crying so hard his face was as red as a Christmas light. I was so scared and upset; he was only eight months old. I remember praying as I paced that floor, asking God to please let my son be alright. We were in that emergency room for eight hours that day. Finally, the doctor came back and said, “Please sit down.” I started crying; my mind was racing a mile a minute. I thought all kinds of horrible things. I was thinking he was going to tell me my son had cancer. I was a complete mess! The doctor said your son has nephrotic syndrome. My response was, “What is that and how is it fixed?” He began to explain to me that there is no “fix.” They only know how to treat it but not fix it. I asked him, “Well how are you going to treat it?” He explained to me that he was going to give me some medicine called prednisone. I’m to give it to him twice a day for three weeks and then ½ the dose once a day for the fourth week. This medication is a steroid. The doctor told me that with this syndrome his kidneys don’t filter out properly. He retains all the fluid that the kidneys should be releasing as urine. That is what causes the swelling, and if there is too much fluid around his heart, he could die. Those were the worst words I had ever heard in my life! My son could die. He also told me that night that the only pediatric nephrologists were in Miami, and I needed to contact them. He gave me phone numbers on the back of a card and told me to make an appointment as soon as possible.
Later on in my son’s life, the prednisone quit working. We had been using the prednisone when he would have a flare up. He was on and off this medicine for twelve years. Then, Thomas became immunosuppresed. When this happened he was twelve years old. We had been dealing with this condition for twelve years. I took him down to his doctor at Jackson Memorial Hospital. We arrived there on a Wednesday morning at 9:00 a.m. We finally saw the doctor; her name was Dr. Shandar. She told me that the prednisone was no longer working, that she was going to have to put him on an oral chemo medication. I asked her to repeat herself. I could not believe what I was being told, chemo medicine? I asked her for how long? She said he will need to be on...