Marty and I saw the pediatric rheumatologist today. And the occupational therapist, and the physical therapist, and the radiology technician, and the phlebotomist, and the physician’s assistant, and the nurse, and a couple medical students, and a nice lady in the medical records department, and a handful of other helpful people.
Our appointment took almost six hours. By the time it was over, we had worked on a plan to change Marty’s medicine after school is out, gotten a TB skin test, asked a few dozen questions, picked up six prescriptions, filled ten vials of blood, had chest X-rays, obtained a form to keep Marty from participating in tackle football during gym class, signed a release to share records with Dr F, participated in a research study, eaten lunch, examined antique steam powered cars, visited the playground, and made follow up appointments with the rheumatologist and the ophthalmologist. All in a day’s work for a family dealing with a chronic immune system disorder.
Although Marty will tell you he feels great, he gets sick too much, I see him in too much pain, Bella sees too much fatigue, and the doctor sees too much inflammation in his body. He also isn’t growing and is anemic because his body has been inflamed for two and a half years. The remedy for all this (we hope) is to switch from Kineret to Enbrel. Because the transition will be uncomfortable at best, we are going to wait until school is out in a few weeks.
Unfortunately part of the deal is that Bella will once again have to be a caretaker for her older brother. I hate that I have to put this on her, but I have to work. Unless their dad or my sister Irene is off, Marty and Bella have nowhere to go during the day. Also if he is hurting, sometimes it is more comfortable for him to stay home. Dear, sweet Bella will once again give up some of her freedom and lose some of her childhood to her brother’s illness. I can hardly call her a child anymore, she is growing up so fast and becoming such a caring, responsible person (aside from the unfortunate encounter with a hot burner.)
As for Bella’s vaccinations, she can have a live injectible vaccine, but then we have to be careful for two months that she and Marty (and I) don’t share any food or drinks, she doesn’t cough or sneeze on him, and she has to be extra careful about washing her hands and keeping her germs to herself. If he is exposed to the live virus, it could make him extremely sick.
I dearly love my kids, but I hate juvenile arthritis with every fiber of my being. It can destroy a childhood, steal your hopes and dreams, cause pain and suffering, create financial hardship, and cause division within families when there is disagreement over treatment options. We need to find a cure for this monster.