Meet Lily.

One morning, at the young age of 2, our daughter Lily woke up limping and her left knee looked slightly swollen. She didn’t seem to show that she was in pain, but was refraining from putting weight on her left leg. We had no idea what happened and didn’t recall any event that could have caused trauma to her left leg/knee. After a couple of hours, the limping stopped and she continued to be her usual self.

We dismissed it and assumed it was just something ‘random’. The next day she woke up crying and refused to get out of bed and put any weight on her leg. This time her knee was obviously swollen. I decided to take her to a medi-clinic where they did x-rays on her knee.

By the time we were seen by the doctor, Lily was jumping around, walking normal, and her usual self again. And besides the obvious swelling there was nothing else the doctors didn’t see anything unusual and simply told us we could control her pain as needed with children’s Tylenol or Advil.

The next morning, it happened again.

She refused to get out of bed and insisted we carried her. I was worried and took her into the children’s emergency as this was very unusual. They completed several x-rays, this time including her hips and the doctor diagnosed her with “Toxic Synovitis” which at the time seemed accurate as she had been recovering from a recent cold. The ER doctor said it would get worse before it would get better, but that it would go away in 2 weeks or so. And as with the day before, Lily was now acting herself, jumping around, and seemingly very content – something that was both baffling and frustrating as I wanted the doctors to take it seriously.

For the next 4 weeks we continued the same morning routine. Lily crying in pain, refusing to walk, giving her Advil, and waiting for it to wear off and for this synovitis thing to completely go away. A vivid memory I have is the sound of her hands and arms slapping the ground in the morning because her favourite thing to do was go see her brother as soon as she would wake up. But because it hurt to walk, she would instead army crawl herself into her brothers room – a memory that is both heart warming and heart breaking at the same time.

Then things got worse.

After 4 weeks of the same pain, my mom encouraged me to get another opinion. She feared that there was something more going on and that it could affect her long term. At this point, her knee was so swollen that she couldn’t walk on it proprerly, compensating else where, and requiring support to stand.

We made an urgent appointment with our family doctor and she helped us find the answers. She didn’t know exactly what was going on but she believed our story and could see that the swelling was quite bad.

She got on the phone and consulted with a pediatric ortho surgeon and they referred her to call rheumatology instead give that injuries to knees in a two year old (even with known trauma) is considered to be very rare.

She immediatly got a hold of Dr. Jariwala who told our doctor to start her on the highest dose of Naproxen and booked us in to see him about one week later. While we waited for her rheumatology appointment, Lily’s knee was getting worse and the Naproxen did not seem to help.

When Dr. Jariwala saw her knee and asked her to walk, I could see concern on his face. He diagnosed her with Juvenile Idiopathic Arthritis (JIA) calling it a ‘textbook presentation’. We completed the next series of tests to confirm his diagnosis and is how we learned that she was ANA positive. Her knee had become so swollen that, without intervention, her risk of permament joint deformation was high. Her leg at this point was contracted and externally rotated because of all the swelling.

He booked her in for a joint injection within a couple of weeks (we would have been in sooner, but it was days away from Christmas and we had to wait until after the holidays). After her first joint injection, they casted her leg to force it straight while the steroid worked to decrease the inflammation. We then went through vigorous physio to improve her walk and stretch her leg. To this day, there is still a slight bend to her left leg.

About a month later at her physio appointment – I remember the day so clearly – I suddenly became overwhelmed with emotions as I noticed her other (right) knee looked to be slightly swollen. At the time I tried to talk myself out of thinking that and thought if it was, the physiotherapist would have noticed it. Today, I know that the rush of emotions was my mom instincts kicking in. I called her rheumatology team and told them I thought her right knee was starting to flare up. They decided to book her in to see her that following Monday. Within a couple of days her right knee had become even more swollen than what her left knee had ever been. Lily was also now limping and waking up sore again. Dr. Jariwala said she would need another joint injection in the right knee and that we were to start the journey with Methotrexate (MTX).

At the time of her second joint injection (only 3 days after the last appointment with Dr. Jariwala), her left ankle and a toe on her right foot had also flared up to the point where Dr. Jariwala had to also inject. He told us in the pre-op room that it was likely that MTX would not work for Lily and based on his experience she would require the next step in the medication tier – biologics. But that, unfortunately, we had to wait the required three months of being on MTX injections before we could be approved for biologics. However he was hopeful that he would be wrong and that MTX would actually work for Lily.

Because of the type of JA and how aggressive it was, he wanted Lily to get an MRI of her jaw to rule out arthritis in the jaw. We also started the journey with regular ophthalmology appointments.

Fast forward to today, Lily has recently celebrated her 4th birthday, and we are excited to say that she has managed to go into remission on the MTX injections. She has been on MTX for almost two years without any flare ups. Something we know that a lot of young children can not say. We are so happy for her and although giving our daughter needles is a challenge all on its own, we are only 3 months away from being able to start the journey of weening her off the MTX with the goal of full remission. It will still take an entire year for her to completely get off the meds but we are looking forward to the next corner. The fist step will start in December where they will begin to reduce her dose. We are all very excited that her first decrease also means she will be taking her MTX orally instead of subcutaneous.

It pains me to see her fear the needles and cry because of them, but watching her in pain those first days a few years ago was much worse. We still find it a challenge to communicate with her the reason WHY we have to give her her needle as she doesn’t remember the pain of arthritis but she does know that she has it. Cassie + Friends has been such a great resource for both my husband and I, our son (Lily’s brother) and even Lily to understand the disease more.

I have been and will continue to be an advocate on behalf of Lily because it is so important for Lily to feel like she has a voice too. Raising awareness and starting the conversation is my ultimate goal. Every March since her diagnosis I dedicate my social media to JIA and we like to do something special that month for our community to bring awareness. The past year Lily delivered over 200 cookies to our school, work places, and to the Saskatoon rheumatology team with a pamphlet that shared her story and more information about the disease.

Thank you Katelyn, Lily, and Family for advocating and raising awareness for kids living with childhood rheumatic diseases!