as told by his mom, Tammy.
I always struggle when I have to tell Josh’s story. Most days I still can’t believe he’s gone.
Josh was well until he wasn’t. In retrospect, we had some early signs but as we would quickly learn, Josh didn’t exhibit symptoms until he was very, very sick.
On July 24, 2015, we were scheduled to leave on our summer vacation. We were going to spend some time in our hometown of Sudbury. We were going to loop back through Manitoulin Island, spend some time at a friend’s summer house, take the ferry to the Bruce, hike there and finally head home. Our kids love road trips and my husband, Doug, is amazing when planning them, always finding the cool stops along the way. Josh was excited. He had drawn pictures of his upcoming vacation.
Instead, the morning of July 24th, my husband and I were headed to LHSC with Josh for what we innocently thought was further testing to diagnose either hepatitis or mono.
Josh had been under the weather since June 29th. He vomited for a day. I chalked it up to a stomach bug. Then he had a sore throat. We brought him to clinic and they said he had strep throat. They prescribed an antibiotic and we went home. The antibiotic seemed to work but on July 18th, our daughter Gabby’s birthday, Josh was vomiting again. He was quiet the next day and on Monday morning, he looked yellow to me. I took him back to the clinic. They drew more blood and did a mono spot test. We were worried about our vacation but knew we couldn’t leave with Josh like this. The clinic put a rush on the blood work. On Thursday, I called the clinic for the 3rd time that week. They told us to come in right away. They had no answers for us, just that his blood work was “off”. They sent us to the pediatric outpatient clinic at Met hospital. I called my husband at work and they saw us that afternoon. After meeting with two different doctors who had no answers for us, we were told to be in London the next morning for 8 am. After some deliberation and concern from Doug and I, the doctor finally agreed to admit Josh overnight. We still had no indication that the doctors suspected cancer.
We arrived in London the morning of the 24th. It wasn’t long before my husband and I finally realized why we were here. PMDU is full of oncology posters and tag lines. We knew the day was going to get worse.
Josh was diagnosed with Acute Lymphoblastic Leukemia (ALL). He took it in stride. He didn’t shed a tear. We shed plenty. That night, he told his dad: “s%@t happens!” That night, instead of taking our three kids on vacation, we scrambled to have someone bring up Gabby and Matt so we could let them know about Josh and they could be with their brother. And we checked into RMH.
People swarmed us. RMH was arranged. We met with representatives from Child Life. The next morning, we were still reeling and the people kept coming. I left to get coffee and when I came back, Doug gave me a package. There was a gas card, a gift card for Shopper’s and some chits to use in the hospital cafeteria. He told me about this organization called Childcan. I said I had never heard about it. He said :”Actually, you have. They’re the ones I did the Polar Bear Dip for.” Then he told me about Renee, how she understood where we were. She had been here. He gave me her number and said I could call if I wanted to chat. I am a pretty private person but Renee was consistently there…every few days, showing compassion, understanding and love. She always had a smile and a hug. I wasn’t very talkative. I was in shock. Renee kept coming and on those days when Doug was in Windsor with the kids, she would sometimes be the only non-medical person I could see for a couple of days. We couldn’t have done it without the help of Childcan. The financial help was very appreciated but Renee was a Godsend.
Josh had many complications. He had low platelets. He had an allergic reaction to one of his chemo drugs. He went into septic shock twice. He consistently had unexplained fevers. On October 30th, we would find out that the ALL was finally in remission. What should have been a happy day for us was one of the worst. We also found out Josh had a second cancer, Hystiocytic Sarcoma. Unlike ALL, it is extremely rare. The doctors at Children’s had only seen one other case in the last 10 years. Unlike ALL, there are no statistics; it’s too rare. Unlike ALL, the prognosis was poor. We worked with an expert at Sick Kids in Toronto and Josh started chemo that day. This chemo was crazy…three drips for five days and eye drops, then GCSF shots to help his blood recover. They wouldn’t send him home. The doctors warned us he would get very sick. We asked when they thought he could come home. They told us their objective would be to get him home again.
Josh never came home.
On December 2, 2015, he went into septic shock again as a result of an E.coli infection he couldn’t fight because the chemo had obliterated his counts. I held him in my arms until his heart stopped. Gabby held his hand and Doug stood and rubbed his head. We lost him on December 3, 2015 at 1:27 in the afternoon.
Josh may not have beat this disease but I think one of his teachers, Kaitlyn Edmunds said it best: “Josh did not lose his battle with cancer. Cancer was unable to break Josh’s spirit…it was evident that his zest for life and competitive fire burned brightly to the end. He took everything cancer could throw at him and kept going. He endured pain that would have hobbled the toughest adult. He found energy in the face of draining treatments. He maintained a positive outlook in the bleakest of situations. Where was cancer’s victory in that?”
Josh would have certainly agreed with her.