When her son Andrew started to get sick, Valentina took meticulous notes to help her keep track of what was happening. Here are selected entries from Valentina’s journal, in her own words:
Nov. 14, 2014 – Andrew woke up limping. It’s the first time I saw it. He woke up a changed little boy.
Nov. 17 – Brought him to our pediatrician who said he probably banged himself. Told if he is still limping in a week, bring him back. I start videotaping his problems with walking.
Nov. 25 – He had to be carried to the bathroom. Went straight to SickKids emergency. After 7 hours, with blood tests, an X-ray, an ultrasound, the doctors there told me he has juvenile idiopathic arthritis. He has to start naproxen, has to see an eye doctor, has to come back in 3 weeks. I’m in shock. I remember thinking, in a month from now it’s Christmas.
Nov. 27-Dec. 10 – Very hard time getting medication into Andrew. Blood in stools, bleeding nose, very little appetite, no energy. It was living hell.
Dec. 11 – Back to SickKids. Eye doctor says everything is okay and the rheumatologists confirm that Andrew has JIA. And that Andrew will need steroid injections.
Dec. 12 – Struggle to give Andrew liquid naproxen. He’s like a different person now. I wonder how many doses we missed. It was a mess.
Dec. 18 – Met with homeopathic doctor as I started to look at different approaches. Worked with them for a while but after a few months gave it up.
Dec. 22 – On a new medication now, Andrew still can’t walk in the morning, and limps all day long. He became very clingy, didn’t want to go to school anymore, and couldn’t be alone.
Dec. 25 – Andrew can’t walk downstairs to open presents. You think to yourself, how did this happen? Did I do something?
Jan. 6, 2015 – Andrew is extremely upset about how he is feeling. Screaming about going to school.
Jan. 8 – He is still limping, but able to walk a bit faster and earlier. Eating a little more. Took him to the doctor.
Feb. 6 – Andrew’s first injections, five of them. It took 90 minutes and he was sedated. For the next two days he had to stay very still.
Feb. 26 – At a follow-up he was doing so well that doctors decide to wean him off medications. We went down south to get away. The trip was great, he was very happy, everything was fine.
March 4 – Met an Arthritis Society physiotherapist who was fantastic.
March 21 – Andrew takes his last dose of medication. Says he feels great.
April 12 – Arthritis Society calls to invite us to a Family Day event. We decide not to go, we were done with arthritis, Andrew is off the meds, we think to ourselves: we’ve got this. We are strong.
April 13 – The next day, Andrew says his leg hurts.
April 14 – He wakes up screaming out for me. When I saw his knees I was beside myself. They had blown up with swelling. I was very upset. I wish all this had happened to me instead.
April 15 – Back on medication. Nosebleeds have returned.
April 23 – Back at SickKids, doctors say he will need injections again. I’m not ready for this, to sedate my little boy again. The eye doctor says Andrew has full inflammation in his left eye and needs medication right away. But he hasn’t complained once about his eye! What is happening here? Andrew starts eye drops and the drug prednisone. Again it’s a struggle.
May 14 – A good day, the inflammation has gone down. With his knees better, doctors cancelled the injections.
June 7 – We wanted to go to the Walk to Fight Arthritis, but things were just too fresh.
June 18 – Back at SickKids. Eyes looking good. Took him off all meds.
June 26 – Back at SickKids and it looks like the inflammation is back again. I feel sometimes that it’s all that we talk about, the arthritis. But I don’t want it kept quiet: it needs to be known about. It’s our journey and I’m trying to make peace with it.
July 7 – Andrew’s birthday. He is four.
July 29 – We have a routine visit and everything looks good.
Oct. 26 – Andrew has been off medication for 4 months. During a visit, doctors see inflammation again. Andrew is diagnosed with uveitis. He begins drops of prednisone for the uveitis.
Nov. 5 – Called into SickKids a week early. It’s recommended that Andrew be given injections of methotrexate.
Nov. 13 – Injections begin on Fridays for a suggested 52 weeks. Andrew is extremely hesitant and he cries. It’s a struggle for Andrew and for us.
Jan. 11, 2016 – Back at SickKids to see Andrew’s eye doctor.
Feb. 4 – Andrew receives a blood test. He gets them every 3 months to make sure his liver and kidneys are functioning properly.
“It’s become a way of life. It’s been challenging physically, emotionally, and mentally. It’s been hard for us to actually accept it, but we are accepting it. We’re very fortunate to have been touched by so much kindness from care providers, family, friends, our new JIA community, and strangers. It’s our new normal and we’re dealing with it. We wish we didn’t have to, but we are. And our journey continues...” ~ Valentina, Andrew’s mom.