From Grief to Giving:
How One Family’s Journey Became a STROLL
“It was a seemingly ordinary Monday night—March 14, 2005—when our daughter Trisha walked into our bedroom and laughingly complained about her ‘elephant legs.” They were certainly swollen, but she did not have a fever and was feeling otherwise okay, so we decided to just get her checked out by her pediatrician on Tuesday evening after she was done at school. Trisha was a first-year scholarship student at Ottawa University in the biopharmaceutical science program. Always a scholar, she was adamant about not missing a single class.
The doctor had one look at her and told us not to panic. Have dinner, she said, then take Trisha to the emergency department at the hospital. She suspected either a heart or kidney problem but didn’t have the necessary tools to make the diagnosis. We were worried sick, but Trisha was calmly doing her schoolwork while we waited to be seen. Finally, they checked her out and told us to come back on Thursday for an ultrasound. Trisha went to her classes as usual on Wednesday and Thursday, then, when the ultrasound showed a cyst on one of her ovaries, she was admitted to the hospital. There was a fear that the cyst may burst, and it needed to be removed.
Trisha was supposed to receive the President’s scholarship from her university the following day. My husband and I were upset that Trisha was missing the awards ceremony. She was in good spirits, though, and was consoling us that at least her older sister Sonya was attending on her behalf. Between cheering us up and watching her favourite Disney movies, she kept busy, but her health was deteriorating slowly. She did not have much energy. Her operation got delayed without any explanation as to why, and then, on Saturday, she started getting jaundiced.
On Sunday morning, it was suddenly decided to transfer Trisha to another hospital. The General Hospital was better equipped to handle the large cyst as there was a possibility it was malignant. They monitored her and prepped her for the surgery that would be performed the next day—just a week after she had first complained to us of her swollen legs. They also started infusing her because her clotting factors were low, and she began swelling and feeling uncomfortable. Fortunately, our youngest daughter, Simrin, had just returned from her March break trip and was entertaining Trisha with her tales and gifts. We are thankful that the sisters had that chance to talk, because around 11:00 Sunday night, Trisha’s oxygen levels fell and her breathing became laboured. She was intubated. We couldn’t have known at the time that she would never wake up again.
Her operation took place at 6:00 am on Monday. The surgeon gave us the good news: the cyst was benign. However, there was bad news that we did not anticipate: Trisha’s liver was completely cirrhotic, only functioning at 10%. Trisha was immediately put on the top of the transplant list. Exactly one week after first being admitted to the hospital, she was flown to the transplant center in London, Ontario.
It was on Saturday of Easter weekend when we finally heard that a Hepatitis B positive liver was available. The transplant began on Sunday evening. Around midnight, we heard the sounds of feet running toward the operating room feet and got really scared.
The doctors said they tried their best. We had a priest bless her, and then we let her go.
Trisha’s passing came as a shock to the whole family, our community of friends, and Trisha’s friends. She was barely ever sick growing up and, all of a sudden, she, who helped everybody all the time, was gone. It was difficult to comprehend the loss, and we relied on family and friends to get us through those days.
In the end, after years of investigation, we were given the diagnosis. Wilson’s disease, a genetic disease, had taken Trisha from us. In retrospect, there were some subtle signs that I wish I had noticed. Years prior, I had remarked about how red Trisha’s hands were. (Red hands are caused by extra copper in the blood stream.) She would sometimes notice that her clothes didn’t fit right and that her abdomen was swollen, but I thought she had simply put on weight. There was also the time at dance class when Trisha was disoriented and not picking up the new dance routine like she normally would. Even on the Saturday just before she got sick, I noticed her eyes were glassy, but I thought it was tears as she was missing Simrin, who had just left on her trip. The day before she got sick, she remarked to me, “Mom my stomach is jiggling as if there is water.” So many subtle signs, and as I reflect on them, I feel guilty and sad.
It was Simrin who suggested that we do something to honour Trisha’s memory. We were surprised to find out that the Canadian Liver Foundation did not have any fundraising events, like a walk, that we could support. Simrin reached out to the organization, and it was with that phone call that our family shifted our focus from grief and towards raising awareness and funds for the Canadian Liver Foundation. We wanted to help prevent other families from losing loved ones to liver disease as we had.
The STROLL for LIVER was born in 2006, a year after Trisha’s passing. It became an annual event that expanded from Ottawa to many other cities, and this year it is becomes a national event. My husband, Daljit, “Papa,” as Trisha called him, is the top fundraiser every year in her honour.