I promised to do this months ago, but I’ve been putting it off. It’s not that I don’t want to share, I’m just not certain what I should share. We are still searching for an answer to Jillian’s medical problems. Medicine is not an exact science until, I suppose, you get to genetic testing, which is where we are. So far we know Jillian has a gene mutation that is associated with a specific group of rare diseases, but her particular mutation is not associated with any specific diagnosis.
Do you see my dilemma? Honestly, we don’t know what we are doing. We can only learn as we go.
So while we wait for additional testing and I share essentially nothing very vaguely, let’s talk about what we do know:
Jillian has always been frequently sick. Early on we were told she has an “over reactive immune system” and that she would grow out of it. It started with high fevers in response to any type of trigger–viruses, vaccines or the store clerk who looked at her the wrong way. I used to check her temperature every time I changed her diaper. Just because I could.
When Jillian was eight months old, she had her first “once in a lifetime rash” and was admitted to Helen DeVos Children’s Hospital. It covered her entire body, including her scalp. She had glove and stocking distribution on her hands and feet, swelling, fever, and lethargy. No one knew what to do. We spent eleven days in the hospital until everything resolved on its own. We were discharged and told it would never happen again.
Only it did happen again. And again. And again. And again.
DeVos became more familiar and comfortable each time we were admitted and with each new specialist we were referred to. We spent three and a half years receiving monthly infusions in the 10th floor HemOnc clinic. Jillian loved infusion days despite the fact that she was hooked to a wall for three hours. There was play dough and movies and blue slushies. I was never more grateful for kind and compassionate hospital staff than on Jillian’s bad days. It’s hard to keep a three year old still for hours at a time, but we did our best.
In the past year, Jillian has had more joint involvement. She has always fallen into the diagnostic category of Juvenile Idiopathic Arthritis (JIA), of which there are seven types, but we’ve learned that’s only a symptom for her, it’s not the end game. While we are talking about learning things, did you know that arthritis is not joint pain? Arthritis is swelling of the joints (which she has) and arthralgia is the pain in the joints (which she also has). She works with a physical therapist at school for stretches, transfers and overall joint protection. We anticipate also working with an occupational therapist as she begins writing more in school.
Jillian has been treated by eight different specialists in total, all at DeVos. We are grateful for care so close to home. Her primary specialist is a pediatric rheumatologist. There are approximately 300 pediatric rheumatologists nationwide and over 300,000 children with JIA. Some families we have met travel six hours or more for appointments. Not only have we not had to do that, we’ve never worried about the quality of care Jillian receives at DeVos. We know she is getting excellent care.
Jillian’s struggles will likely be lifelong. Her primary treatment goal is to control the systemic inflammation. Chronic inflammation can lead to many problems throughout the body. Jillian has already experienced some effects of chronic inflammation including slow growth and hearing loss. Even so, she has never let it hold her back. When you meet Jillian, you won’t forget her. She is strong. She is joyful. Just watch out for her sass. She has that, too.