Published April 24, 2022
Read about the time when Foster had two Easters.
Every year around this time my thirteen year old son will remind me about the year that he celebrated two Easters. He chooses to see this as a positive memory. He remembers the parts where his sister was too sick to get off the couch to collect eggs in their Easter egg hunt, wasn’t interested in her basket and how shortly after the Easter egg hunt, her Dad and I started looking for a back up plan for him on Easter Sunday. With immediate family out of town for the holiday, or working, we reached out to close family friends who live nearby. They were heading out for brunch with family and said no problem drop him off he can come with us. He had a great afternoon, with brunch at a restaurant, time with friends, family, and they even had an extra chocolate bunny (who has an extra bunny on hand?)
Lily spent the day in the ER and was sent home with the request to return to the ER the next day for a check in with her specialist. She was admitted later that same week, for what would turn out to be an over three month stay at CHEO.
When she returned from CHEO on that Easter Sunday, she insisted that we continue on with our original Easter dinner plans and have her grandparents over for dinner. Therefore, leading to her brother having “two Easters.”
Each Easter I am reminded, and I think he is as well, of our wonderful support system. How many people we have willing to help us out when we need them. How many families that are willing to take our children in as their own. I think many people have experienced this positive through the experience of COVID and needing to reach out to their own bubble for support.
Significant Dates; Significant Month
Published March 3, 2022
In honour of Kidney Month, we have written our first blog post. This post discusses our personal journey as it relates to Lil' Kidneys' goals and mission in the community.
Every parent has them. For most parents they are the milestone dates. Of course, your child’s birth date. When they are an infant, especially with your first child, you carefully track their first step, the first time they roll over, take a step, lose a tooth. Some of us take pictures and write it all in a baby book. As they get older it’s the first day of school, their first dance, first championship game, and so forth.
We just went through some significant dates.
January 19th (2019): the date Lily was diagnosed with FSGS.
January 21st (2019): my last day of work for three years, little did I know at the time that Lily’s diagnosis would lead to three mental health diagnoses for myself.
March 3rd (2019): Lily’s first seizure and diagnosis of PRES, I think the scariest day for me.
February 22nd (2021): Lily’s nephrectomy, the day they removed both her native kidneys.
March 11th (2021): the day of Lily’s kidney transplant in Toronto, and the day of her Dad’s donor surgery, that he did solo during COVID, so that I could be with her.
This all seems so heavy and so sad. And parts of it were and are. Many parts of it are uplifting. Lily has an amazing team of doctors that tried for 120 days in-patient to save her native kidneys and much longer as an out-patient. They attended conferences, spoke to doctors around the world, trying to find new methods to stop the protein from spilling and scarring her kidneys.
Within 24 hours of her transplant, her team in Toronto was right there on a Saturday, starting her on plasma exchange to try to prevent the FSGS from damaging her new kidney when it returned. Her team in Ottawa continues to this day to monitor her closely and continuously communicates with us.
March brings many significant dates. March is Kidney Month. This March 11th will mark the 1st anniversary of Lily and her Dad’s recipient donor transplant. Through these significant dates so many positives came to be. Our support system is strong, our team is incredible. Our family and friends stood by us. People we haven’t been able to see in two and a half years (due to COVID) continue to check in on us. Food was sent, children were driven great lengths to keep our family together. Funds were raised to help cover the costs of over six weeks in Toronto. Pets were cared for. We are loved.
Through Lil’ Kidneys we want to pass on this sense of community, this sense of strength and caring. We want to establish more significant dates as we meet our goals of supporting and positively impacting other families dealing with paediatric kidney disease in our community.