Just over four years ago, our world turned upside down the Saturday before Thanksgiving. My husband and I rushed our son to the Alberta Children’s Hospital as he had been sick on and off for two weeks with a cough and after numerous visits to clinics his condition had gotten worse. Five minutes into the ACH emergency triage the trauma team was called and we knew something serious was going on. Numerous blood tests were done and the fear of the unknown finally came to a halt when we were advised that our precious son’s kidneys were failing and he would need to be put on dialysis. That feeling of wanting to pause the moment and digest everything is so real. So many questions came crashing into our minds, the biggest of which was “why?”
We were scared to death, but we knew we had to remain strong. The only words that I could manage formed a question, will my son still live? We were assured that they would do everything to keep him alive and do the best they can. We were rushed to the ICU, I was hugging my son telling him that he was a strong brave boy and he would make it through. He was later diagnosed with Infantile Nephronophthisis, a rare genetic condition which can cause childhood kidney failure and was put on peritoneal dialysis. The Alberta Children’s Hospital was our home for almost two months.
Calvin was on peritoneal dialysis for twelve hours a day, seven days a week, for three years. Our life at home was so hectic, hooking him up to the machine at 7PM and unhooking him at 7AM. By 8AM, we were on our way to drop Calvin off at a daycare as both myself and my husband worked full-time. We learned and adapted to our new way of life with so much appreciation for simple things that we often took for granted. We did our best every day to let Calvin experience a normal childhood (with a twist as we told him). We took him on hikes and overnight trips bringing along our machine! We had countless clinic visits, blood workups, and several emergency trips throughout the three years on peritoneal dialysis at home.
On August 22, 2020, another turning point came in our new dialysis life when were admitted to the ICU. Calvin’s peritoneal fluid leaked into the pleural space. He was having difficulty breathing with water getting into his lungs and his dialysis treatment was switched to a Hemo Dialysis. He attended four treatments a week for four hours at the Alberta Children’s Hospital. Tough as it seemed we welcomed this change in a positive way as a reset in that Calvin got to enjoy home time without being hooked up to the machine. We were so blessed to have a supportive work family who helped us juggle work and Calvin’s treatments. Calvin had grown to be very independent at the age of four as he managed to get himself ready for treatment as I continued to work from home.
There was never a day that our son did not look forward to going in for his Hemo treatments and clinic visits, this is a true testament to the quality of care he was getting. Though it was unfortunate that he had to go to the hospital so often he felt, and still feels, the love and developed so many friendships.
On October 2020 Calvin got put on the transplant list and our hope kept growing! Months passed and we kept praying for a miracle. In December 2020 Calvin’s very special friend Allisson at the Alberta Children’s Hospital approached me and asked for details on how to become a donor. After going through the process, she found out that she was not a match for Calvin. She was provided with another option: the KIDNEY PAIRED DONATION (KPD) program. Kidney paired donation is a program that matches transplant candidates with suitable living donors. It gives people the chance to become a living kidney donors while ensuring that someone they want to help receives a needed kidney, even if they are not a direct match. After over a year of the tedious transplant process, the special day finally came on January 25, 2022. Calvin had his life-saving kidney transplant. We are forever grateful to our anonymous donor and Calvin’s special friend, Auntie Allisson. You are both our Angels in disguise and our testament that miracles happen. Your bravery and kindness are selfless acts that will forever have a life-changing impact on our son and you are an inspiration to so many.
Post-transplant was a challenging time for our family emotionally and financially. Our Social worker let our family know about the David Foster Foundation as we were getting closer to the transplant date. Both myself and my husband took a leave from work so we could focus on Calvin’s recovery. We were so blessed and lucky to have this opportunity to focus our time solely on providing care to Calvin months post-transplant with big help from David Foster Foundation. The foundation supported our family with our house bills and groceries. These are times that Calvin needed us the most and we look back with grateful hearts that we were able to have this time thanks to all the patrons that support the David Foster Foundation.
Calvin’s kidney transplant was a success but as to be expected there are hiccups along the way. Just less than a month post-transplant we were admitted back to the hospital as his creatinine was going up. However, we were discharged after 2 weeks and have been home since and he is recovering well.
Calvin finally gets to enjoy the things that he missed through the years growing up. I remember the first thing he did when he was ready to be in the water was soaking in the bathtub and play in the sprinkler! He no longer must worry about his PD and Hemo line. Recently, we went camping and slept outside without having to worry about bringing the dialysis machine or driving back the next day for his treatment. Today, we still visit the hospital weekly for blood work and for Uroflowmetry tests due to his bladder issues. We are still on numerous medications daily including his anti-rejection medication, which he will be on for his entire life.
Photo Credit: Flytographer
Calvin is an inspiration to us his parents; we draw strength from his contagious joy and zest for life. He loves to joke around, do his funny dance moves and sing with his guitar. He is a fearless 5-year-old boy who is adventurous and loves to try and learn new things! Sometimes I hold him back from doing too much movement or too many activities and he answers me with conviction, “I can do this, I am brave.” The same words I spoke when we were being rolled into the ICU years ago.
Looking back, we don’t know how we managed. There were days driving to treatments that we felt the road was never ending and the tears we couldn’t hold back came but we just kept going. Hope is the only thing we hold on to. With God’s grace, support from our families who have been there since day one, prayers from friends and strangers and people we haven’t met but who prayed and continue to pray for us, we keep going. The journey ahead is still a rollercoaster but with God’s grace, we remain grateful. Every day is a gift.
