2017 started for us on a high, everything was falling into place – our swimming pool was due for completion, kids’ sports organised, last minute fundraising for the trip of a lifetime with kids dance studio underway.
Then suddenly, Joshua became very ill. Back and forth from our family doctor for nearly four weeks, only to be told he had a virus and he would be OK in a few days. Instead, he got sicker and more lethargic before being referred to a paediatrician who immediately hospitalised him, and testing commenced for a long list of nasty viruses and cancer.
We were terrified; our sporty, academic, creative thirteen-year-old could not get out of bed or go to the toilet unassisted.
Deterioration continued for another week before meet an amazing doctor and nurse who quickly diagnosed Systemic Juvenile Idiopathic Arthritis (SJIA). Relieved to finally have an answer, little did we know the emotional, inspiring, confusing and bumpy journey we were about to take.
Getting our heads around the SJIA diagnosis took time. We did some research, had lots of messages from friends and family with support, was tormented by “why Josh?”, “at least it isn’t cancer”, and “it’s not fair” feelings and lots and lots of questions.
Every question we had was answered by our amazing team who we could not be more grateful for. Even the questions that were impossible to answer were answered with an explanation as to why it was impossible to answer.
After this emotional rollercoaster, we ended up with a list of logistic questions “what about his sport?” and this biggie: “what about our trip to the USA in 8 weeks where both our kids are scheduled to in an American Cheer and Dance competition?” So many unknowns.
With Dr Singh-Grewal and Anne’s support we took our weak, miserable boy home. Joshua began his medication journey, we were amazed by how quickly he responded to the initial medication, Prednisone. He returned to school and began to improve mentally as well as physically.
The exhaustion and lack of physical ability was tough but Joshua made a decision he was not going to be different and didn’t want to be treated differently. Then all of a sudden had this new-found determination: he returned to softball, futsal, soccer and dancing. No matter how bad he felt he was determined to not let his team down and showed up even if he was physically unable to play.
Gradually his strength returned. Side effects of prednisone began to show, increased appetite, weight gain, acne—but Joshua didn’t care, at least he could move with without excruciating pain.
There were weekly visits to the doctors, daily medication, regular blood tests (for a kid who feared needles), so many new things. Joshua still had pain in several joints so Methotrexate was added to his medication plan. Once again, we saw improvements and were surprised how quickly he responded, other than exhaustion and small amount of pain Joshua was returning to our fun-loving, hardworking boy.
He started participating—not just watching and supporting—all his teams, even though he had still not been given the all clear to travel he was determined to train with his USA competition teams and prayed that he would be allowed to travel. We tried to plan for the “what if he can’t?” scenario.
At times, we became frustrated with people who that kept saying “but he doesn’t look sick” and “you have to be happy because it isn’t cancer”. We felt guilty for being glad it wasn’t cancer but also angry because although not terminal, it is a debilitating disease none the less and one currently without cure. Others maintained that the doctors were wrong and that we should have him re-diagnosed, or that it was our fault for letting him play so much sport. As parents, we were scared and worried about the unknown and held onto Joshua’s determination to beat the disease, to help us through.
Finally, after a long six weeks, we were given the approval to travel. The excitement of that news motivated Joshua even more and he became an inspiration to his team mates, teachers, coaches and friends. He trained harder and fought to hold his own and not let his team mates down.
Then suddenly, four days before boarding our flight, Josh woke up and couldn’t walk, his knee badly swollen. Immediate contact with the hospital and an understanding medical team found us the hospital early Sunday morning (the day before flying out) having a Cortizone injection. After adjusting the medication plan slightly and being overwhelmed by nerves, we were finally ready to leave, despite a few soothsayers cautioning us not to go.
Joshua became an American National Champion in both Hiphop and Cheer alongside his sister and his team mates.
They performed at Disneyland and in Hollywood, they participated in workshops at Disneyland, as well as at elite cheer and dance studios. After our two-week dance tour, we began a family adventure on our own. At his point, Joshua was exhausted and was beginning to become unwell. We kept in contact with Joshua’s doctor and the nurse via email which gave us a sense of security, and after a few days rest Joshua recovered and we avoided a hospital visit. We visited five states and saw the most amazing things. It was a dream come true and the trip of a life time.
Three months after diagnosis, Joshua’s pain had decreased, the fevers and rash became less frequent but now the medication side effects were apparent. Joshua had put on nearly over 15 kilograms and sport was a challenge. More adjustments of medications to counteract the side effects followed.
School was difficult when kids began teasing Joshua about his weight, and although the school was amazingly supportive and put a stop to the issues, Joshua’s confidence took a beating.
The next two months presented many challenges. Joshua flared as we began weening off Prednisone so the dose was increased again and then changed to Methotrexate injections. Our once terrified-of-needles child now had weekly injections and was learning how to self-inject. Again, Josh amazed us with his maturity and how he embraced the change. By now we were worried that things would never get better but Joshua kept pushing and in turn became our inspiration: taking everything in his stride and showing such determination not let this disease beat him. “I own it, it doesn’t own or define me” became his motto.
Recently, we started on fortnightly Tocilizumab infusions and within a month we began to see our young man improve in leaps and bounds – literally. He is tumbling better than ever, he is able to play a whole soccer game without needing to come off, is hitting home runs in softball and he is motivated in school.
We’re now nearly ten months into the SJIA journey and have felt every emotion, worry and concern but can definitely say we are stronger for it – Joshua is an inspiration to all those around him. Today instead of tears of fear and sadness our tears of happiness and pride. We take each day as it comes, the good with the bad and celebrate every step of progress.
We don’t know what the future holds for Joshua but we do know that he will not give up, or let SJIA define his life.
This incredible kid has taught us that anything is possible and you can achieve anything you set your mind to. He inspires us every single day.
By Josh’s mum. October 2017