Lately, it seems there have been a number of parents with newly diagnosed children on the community boards, writing blogs, in my local chapter. While I am so amazed at people’s ability to take control and reach out for answers so quickly…. It kills me to know what they are going through. It takes me back like it was yesterday.
For some, diagnosis of JIA comes after months of steadfast pursuit of answers, seeing various doctors, having multiple tests and not taking “growing pains” as an answer. Because diagnosis is essentially a process of elimination, for those with symptoms that wax and wane, travel from joint to joint – it can be a long, frustrating process down a long, winding road.
For us – it was like the ground opened up and sent us down the rabbit hole to an alternate world – immediately to a dark, unknown space. It was healthy to sick in sixty seconds… well, in a few days, but it felt like minutes.
I remember being at urgent care one night because Caitlin had what we thought was the flu. We had already been to the pediatrician, but the periodic Tylenol doses did not seem to be helping her frequent fever spikes to 105 degrees. When they told me that they wanted to do a blood test, that seemed like the worst thing imaginable! Holding down my three year old so they could stick a needle in her? We asked for a phlebotomist that specialized in children, and they only had to try three times. It was very difficult not to cry… or throw up. We left with no answers, except that they didn’t suspect meningitis, and we needed to see the pediatrician the next day.
By the time we got called in to our pediatrician, Caitlin was lethargic – back up to 105, with stiff swollen knees, and a neck that would no longer turn. Her voice was high pitched, like she had just sucked a helium balloon – but it was actually due to swelling in her throat. I was still hopeful because she had actually woken up without fever and had even played… but everything came back by the time we stood in front of the doctor. She could not walk. We had no idea that we were already on a roller coaster that has no exit.
He sent us back to the hospital – to the lab again. He called that evening at 9:30pm and asked us to come into the office first thing in the morning. He asked me to bring my husband. He said he would rather not talk about it on the phone. He warned that I should probably not try to search possibilities on the internet. When we got to the office in the morning – the doctor and both nurses were standing in the waiting room with worried, nervous expressions. You need to go to the hospital, he said, with explanations that were foreign to me. Elevated blood levels – SED rate, CRP, inflammation markers. White blood cell levels high. I’m not certain – but it could be an infection. Or it might be arthritis. Kids get arthritis? Or it might be cancer. So, guess which word we heard?
The first test was a bone scan. We are going to inject this fluid. Injection?!!!! . Come back in 90 minutes. Lie quietly for a long time – don’t move. Wait for word from the doctor. He would like some x-rays….. We can’t tell – we will need more tests. We are going to have you admitted, because it’s Friday and that’s the best way to get things done quickly. It didn’t feel lucky at the time – but it actually was. In four days, she had tests that it would have taken weeks to schedule.
They sedated her for the MRI that night. I am claustrophobic and could barely breathe as I watched my baby slide into that tube. The echocardiogram and EKG’s were not so bad – except they discovered swelling around her heart. The specialists were in and out and each time we would explain the whole story, trying to remember all the latest results… trying to remember the last months to see if we had missed something. Infectious disease specialist. Oncologist. Cardiologist. Floor Pediatrician. Doctors on rounds. I could not keep them straight.
I cried as I called all of our family…. The gut wrenching sobs you have as a child where you can’t breathe enough to speak. Just come, please. My in-laws drove all night. My parents were much closer and came immediately. She was in so much pain; we gave her whatever we thought might bring comfort. And we stood awake and in shock that first night, urging the morning to come so we could get back to finding the answers.
By the time they did the spinal tap, I could not bear to go with her. My husband held her hand as they gave her twilight sedation and put the needle in her back.
As the days went by, the diagnoses were eliminated. Thankfully, before they got to the scheduled bone marrow needle biopsy, they brought in the pediatric rheumatologist. A glance through the charts and a thorough exam. She pointed out the rash we had barely noticed, and the swelling in those sweet little fingers and toes. Without a doubt, she said – it’s systemic juvenile rheumatoid arthritis. The medicine began immediately. Our journey had already begun.
My family and friends were relieved – At least it’s not cancer! I was relieved too….. At first.
I wish there was something I could say to those families going through it now. I wish there was some magic I remembered – some trick to bring back the sun. I can tell you that there are lots of parents who can lend an ear, lend a hand…. Somebody has been there even though you feel totally alone. Somebody can tell you about the medicines, if you want to ask. Even though there are so many types, so many manifestations, somebody will relate and have something to offer. I can promise you that thinking back on this time will always make your heart sink – a little taste of post-traumatic stress. But… it will get better. And this will only be what you are looking back on. There will be much more good to look forward to…
Best hopes – especially to those in the dark early days.