In September of 2014, summer ended and our three daughters headed to back school – Anika into grade 4, Jaylene to grade 3 and Claire starting preschool. With school routines starting up again, life seemed back to normal. Then, out of the blue, Jaylene began complaining about a rash she had noticed on her upper thighs, then her abdomen, and then her arms.  We took her to our family doctor on Sept 26, 2014. Unable to diagnose all of Jaylene’s symptoms, she proceeded to make an appointment for Jaylene to see an allergist and also a pediatrician. The allergist appointment was for February 2015.

This was far too long to wait as the rash was not going away and Jaylene was increasingly uncomfortable. For the next week, I called the allergists’ office every morning begging them to see our daughter. My persistence finally paid off and on October 29, 2014, we saw Dr. Bhui in Surrey. There, Jaylene’s blood was tested and it showed that she had no allergies; again, there was no explanation for the rash.

By then, we’d had enough of this persistent rash. It would start every day around mid-morning, along with a fever, and it would persistently get worse as the day went on. On Nov 6, 2014, I took Jaylene to BC  Children’s Hospital emergency ward. She was seen and referred to Dermatology and diagnosed with Chronic Urticaria. Jaylene was put on high doses of antihistamines, day and night, to defeat the rash. We waited and hoped.

Well, this didn’t work either. We were very frustrated so we chose a different route. We decided to see a homoeopath and see if there was anything they could do to help Jaylene.  We tried creams and vitamins, none of which provided any relief for our daughter. Feeling like we had no other option, we paid for a blood and allergy testing for Jaylene. We changed her diet to be gluten free, peanut free, and lactose free. We were willing to try anything at this point – the rash was getting worse by the day. Jaylene was also now having regular headaches, upset stomach, pale skin, tiredness and fevers, always alongside the rash.

On December 4, 2014 we saw a pediatrician in Langley. After he listened to what was happening to Jaylene, he began asking her questions about how her joints felt. For the first time, she was saying that they hurt (on reflection, she had complained before, but I put it off to growing pains). The doctor mentioned JIA and that I should read about it. He was concerned that Jaylene may have Systemic-JIA and that we should test her blood and make an appointment for her to see the Rheumatology Department at BC Children’s Hospital. This appointment was booked for Feb 13, 2015.  

Over the next two weeks, Jaylene began to complain more consistently that her wrists and ankles hurt.  She began having trouble walking up and down the stairs. She tired more easily and the rash persisted. On Dec 21, Jaylene was sitting on the couch sweating, shivering and covered in hives from the head to between her toes. I bundled her up and took her to BC Children’s emergency again. This time the nurses reacted fast to give her Tylenol because they thought she was having an allergic reaction. After four hours in emergency, the rash and fever had both subsided and we were sent home once again.

The Christmas season was heartbreaking. Jaylene was unable to lift her head off her pillow and was unable to move. Her dad was carrying her daily up and down the stairs. Christmas morning was the worst: she awoke with severe stiffness and eventually made it slowly down the stairs in tears. She saw that Santa had brought her a new bike – her Christmas wish. She cried and laid on the floor asking for everyone to give her 15 minutes so she could feel well enough to open the rest of the gifts. She was unable to ride her bike that day and for the first two months that she owned it.

Another trip to our local hospital on Dec 29 proved to us that nobody knew what was happening to our daughter. She was sent home again with no answers. On January 8, we woke up. Christmas break was over, but Jaylene couldn’t go back to school and life was far from normal. That morning, I had her dad carry her to the van and I told him I was not coming home until someone would listen to me and that they were going to find out what was wrong with Jaylene. I captured the attention of the first doctor that walked in the room and she listened. I was a mother on a mission. Within 30 minutes Jaylene was being looked at by a team of doctors. Within the next hour, our lives changed.

Our daughter was diagnosed with Systemic Juvenile Idiopathic Arthritis. Treatment began and steroids were started. This initially didn’t help and she got worse over the next two weeks. We began intravenous treatments at the end of January 2015. Tociluzimab was the first biologic we started on. Soon after, we added methotrexate.  Over the next few months we tried different ways to reduce the inflammation in her skin, but nothing stopped the rash. Some of these medications even caused her to have very poor behaviours. Those medications were stopped. The intravenous treatments continued every two weeks until October 2015, when we opted to stop treatment of the biologic to allow Jaylene’s body to increase levels of CRP. We did this in hopes of qualifying for a research program with canakinumab. By January 2016, this had not happened and the rash still continued getting worse to the point that it would burn and itch as the day progressed.

In February 2016, we started IVIG and had 4 rounds of that with no changes to her rashes and fevers. These treatments brought on migraine headaches. In Jaylene’s own words, her life was miserable. There was no quality of life. She was scratching daily and the burning was impossible to defeat. On June 3, we gave Jaylene her first injection of Anakinra. These daily injections, described by Jaylene as “fire burning under my skin,” have more than changed our lives and affect our whole family, to this day, in many ways. But the best part? We have our daughter back. She is back to her old self, now with a new toughness and loss of innocence that only families who’ve suffer can understand.

Our family tackles the injection battle every day. We are a team and everyone in our family plays a part. Together, we will survive and give this child the life she deserves. As Jaylene tells us, “I may have arthritis but arthritis doesn’t have me.”

UPDATE:

Christmas 2017 came around and Jaylene became the sickest we had ever seen her. She was suffering from MAS(macrophage activation syndrome). Jaylene was close to liver failure.  She was taking 80 + pills a week and 8 painful injections. She was on anti-organ rejection medications so her body wouldn’t reject her liver. The medications were increasing and the doctors recommended that Jaylene start a medication called canakinumab. We didn’t have the insurance coverage for such a pricey medication so we advocated the government to help cover the costs of $20,000 a month.

After an amazing campaign Cassie and Friends helped us succeed and in March 2018 Jaylene began the new medication. This has changed our families lives. Since the first injection Jaylene has done amazing. It is now 2020 and Jaylene is 13 years old, attending high school and living life as she should. We thank Cassie and Friends every day for what they helped us achieve. Every year we give back to this amazing society by running a bottle drive to raise money.  

Jaylene is running in the Vancouver Half Marathon & 5K Scotiabank Charity Challenge virtual run. You can donate her fundraising page here.