Fortunately Harley already had a paediatric allergist from her egg allergy (which she’s since outgrown). So I called her allergist’s office and booked an appointment. A couple months later, in October 2022, she performed an “amoxicillin challenge test” and determined that Harley was NOT allergic to amoxicillin (good news, but no answers). She didn’t feel comfortable doing the bee challenge test on Harley at such a young age because of its intrusiveness, so she prescribed us an epipen to keep on hand, which was a great solution. Luckily, we’ve never had to use it.

Since the first incident in August, when Harley first had difficulty walking, things had progressively gotten worse. She continued to struggle walking, bending, even lifting her own body to sit in bed or roll over. She had developed ganglion cysts on both ankles and both wrists filled with fluid. The poor girl’s quality of life was deteriorating in front of our eyes as her mobility got worse and worse.

I’m September 2022, I took her to see her family Dr. He ordered bloodwork right away and immediately worried it could be juvenile arthritis. I had never heard of this disease before and thought there was no way! It is likely just growing pains. After bloodwork results didn’t show much, and we went to him for another follow-up, he agreed that her mobility was getting worse and he referred us to a paediatrician.

We saw the paediatrician in November 2022. She did a thorough exam of Harley, trying to explain the mobility issues and look for signs of inflammation. She didn’t have much success, so she sent a referral to Sick Kids Rheumatology clinic and started Harley on Naproxen to manage the pain.

After a few weeks, we received an appointment for a Zoom call with Sick Kids Rheumatology for mid-December. By the time the appointment was only a couple days away, Harley’s knees and other joints were so swollen (her knees were doubled in size). We had to carry her everywhere, because walking was becoming so painful for her. I called the Rheumatology department and asked if we could please see the team in person, as her symptoms were getting drastically worse by the day. They agreed and changed our appointment to in-person.

December 14, 2022 – our first appt at Sick Kids. The day our lives changed. We were so grateful to have such a wonderful, experienced and thorough Nurse Practitioner and Rheumatologist examine Harley. They told us they were 99% sure she had JIA and explained what that meant to us. They said the other 1% chance would be Leukaemia. My heart stopped. I couldn’t hear much after hearing that “L” word. The N.P. told us that our little girl was in A LOT of pain every day, all day. Again, even though I knew that, it broke my heart to hear. They increased her dose of Naproxen and started her on prednisone to help with the pain and inflammation. They also started her on methotrexate weekly injections right away as well. The nurse gave us a thorough lesson on how to administer, so we could do them in the comfort of our own home.

They sent her for x-rays and an eye exam that day and scheduled follow-up appointments for the following week (one Zoom and one in-person). We were beyond thrilled to hear that it was JIA, and not Leukaemia, that I think some of the “sting” of hearing about her diagnosis was lessened.

We were still overwhelmed with this news and had a lot to learn, but most importantly needed to get the best treatment and care for our girl as possible!

After 3 months of methotrexate (meanwhile finishing the Naproxen and weaning off of the prednisone), we saw only a mild improvement in her joints. Definitely not what the rheumatology team had hoped for. So in March 2023, they discussed the options of introducing a biologic med in combination with the methotrexate. After the rheumatologist explained the most scary potential side effects with us, I completely broke down. I began crying and felt so much anxiety in that moment. It’s like it had all finally just hit me and I couldn’t be “strong” anymore, even though I needed to be for my little girl. My husband, thankfully, is a much more reserved person and was able to take over the conversation and explained that we could not make that decision that day; we would need to talk about it together and weigh out the pros and cons.

At our next Sick Kids appointment, the end of April 2023, we made the decision to start Harley on the biologic drug. The rheumatologist also switched her methotrexate to a weekly oral dose at that time, to avoid her needing so many injections.

After lots of emails, phone calls, and paperwork, Harley started on her new treatment plan in May 2023 and continues with that same plan now. She now takes biweekly Amgevita injections, weekly methotrexate orally, and of course weekly folic acid orally as well.

Within a month of stating the Amgevita, by June 2023 – which was her 3rd birthday, we saw major improvements in Harley’s mobility. It warmed our hearts so much to see her running, skipping and just being a kid! She was in gymnastics classes and played soccer. She was able to participate without (too much) pain. She’s learned to communicate her pain and take breaks when needed. (I hope she will continue that strength in communicating as she gets older.)

The only real side effect we noticed from the Amgevita was a major increase in hunger. We could not fill her up! She ended up gaining 14 lbs in 6 months. She also grew 3” in that timeframe, but I’m positive the increased hunger and weight increase is due to the Amgevita. The rheumatology team doesn’t necessarily agree because it’s listed as a “rare side effect” and they believe it to be more of a side effect in adults, rather than children. But as someone who has always gotten the “rare side effects” from meds my whole life, (paired with my trust in my “momma gut”), I know it was the Amgevita that caused it. I didn’t care about the weight gain, as long as the extra weight wasn’t affecting her joints or holding her back from being the kid she wanted to be! Regardless, she seems to have plateaued out now and is doing amazing. Besides the odd flare-up, her life has done a complete 180 in the past 9 months!

We are grateful for so many things. We’re grateful for our thorough, patient, and supportive team at Sick Kids who care so deeply for Harley and answer all my emails with questions! We are grateful for the medications that have been a game-changer in our daughter’s life, and the doctors and researchers who have worked so hard to make these options available! We are grateful for the support of our family. And we are especially grateful for Cassie + Friends.

We were referred to C+F during our first visit to Sick Kids in December 2022. Seeing as that appointment was a blur to me, I didn’t do anything with the info given to me by our N.P. She mentioned C+F again to me a couple more times in the future and expressed how wonderful the support of this organization would be for all of us. I finally looked into it a few months after diagnosis and I am SO thankful that I did.

Our first time really “experiencing” Cassie + Friends was during their March 28, 2023 Zoom seminar entitled “Newly Diagnosed: The First 12 Months”. It felt like this webinar had been created for us! The timing couldn’t have been more perfect. We had just received our daughter’s diagnosis 3 months earlier and were well into the “overwhelmed, feeling alone, not knowing what to do or where to turn” phase of our journey. My husband and I watched the seminar together and we both were overwhelmed with inspiration, gratitude, and feeling of community and support. That webinar changed everything for us. We now understood the persistence of our N.P.’s high recommendation of C+F.

When we heard about the Cassie + Friends charity walk/run as part of the Toronto Waterfront Marathon, we immediately knew we wanted to be a part! We registered our team and started getting pledges. This brought so much meaning to us. In a time where we were feeling so alone and overwhelmed, raising awareness and money to help fund this wonderful Canadian organization brought us “hope”. We named our race team, “Hope for Harley”.

I could’ve never prepared myself for the enormous emotions I would have at the race event. I guess I wasn’t sure what to expect. We were doing this for Harley and she was so proud (regardless of her not really knowing what this race was about – she just wanted to “win”!). And that she did!!! She absolutely rocked the 5k, only riding in her wagon for less than half the distance. At the finish line, we were greeted by the staff members of Cassie + Friends, as well as other parents and children who are living similar journeys. Being able to connect, communicate, and interact with these people…..I was speechless. And I was a bawling mess. Tears of joy only!! I finally felt “a part” of a community with children who fight the same battles my little warrior does. We weren’t “singled out” anymore.

Being a part of C+F’s community and events has been the biggest blessing. We couldn’t wait for Family Day to continue to grow our relationships and learn more about how to help our little girl and her future with this disease.

We are eternally grateful.

Bobby-Jo Vervoort, mother to Harley Vervoort (polyarticular JIA)