Jake ended up having about 11 gram bags of prednisone his senior year. It is a brutal drug, and it took months to wean him off of it. He started an IV drug called Remicade before he was discharged. We cautiously took him home, and the plan was a monthly infusion of Remicade. He planned to return to school for 2nd semester. My mom was living in the hospital by that time, and we intended to have Thanksgiving in the cafeteria. At first we tried to keep Jake’s illness from her, but she was used to me visiting once or twice a day. I finally had to tell her. I could see the spark go out of her that day, and her health continued to decline. Dave and Jake decided to grill steaks on Thanksgiving because the hospital seemed too risky for his compromised immune system. Things were looking hopeful. Jake’s second infusion left him feeling “Remicade good”. He went to see my mom in the hospital. The look on her face when she realized it was “her Jake” was priceless. She forgot by the next day that she had seen him, and she was back to fretting. Within a few days, “Remicade good” was wearing off. His headache returned, and he was speaking jibberish again.
We knew something was wrong with Jake. We had been to different doctors for various reasons, and I had shared his history, but no one seemed to have any answers. We could describe the symptoms- frequent ear infections as a baby, the weird virus in the 1st grade, the warts and how Jake could just never get “just a cold “. He always got “sicker than normal”. His sister became ill with gastrointestinal flu after we visited the children’s museum. Soon Jake had it. Molly recovered in a timely manner, while Jake had the oddest diarrhea for a month. He was happy-go-lucky and no fever, but still in diapers so I experienced the diarrhea first hand. I wasn’t overly alarmed. He was eating and drinking, but lost weight. He didn’t act or feel sick. He finally recovered. As years passed, he would always get sicker longer and worse than his sister. His colds always went to his chest, and he was diagnosed over and over with pneumonia. He missed a lot of important events like field trips, state track meets, holidays…we later chose a small, private university close to home anticipating these acute illnesses. In 2012, we took him to see a nurse practitioner at the clinic assuming he needed an antibiotic. She was perplexed. She called in her attending physician who saw his odd, lacey rash. “Kiddo, you have a connective tissue disorder.” For the first time ever, someone seemed to make a connection. We were referred to a renowned children’s hospital. We were finally going to have answers. The first doctor was a rheumatologist. “Who sent you here?” “Why did he send you to me?” I tried in vain to give him every sympton, every detail. He listened and dismissed us. We must have looked so forlorn that he decided to refer us to another doctor. So a month later, we were back. Of course Jake was symptom free and doing pretty well. He took blood, and told us to call him when Jake was sick so he could see what we were describing. Eventually it happened. Jake felt terrible; the weather was terrible, and I forced him to travel 2 hours to see the doctor. The visit was unremarkable, but finally we had an answer.
I am a daughter, sister, friend, teacher, wife, mother- in that order- who doesn’t mind sharing her stories. Sometimes they are just for fun or entertainment, but maybe some will bring comfort.