My Story…
This is Sarah's Story and why she is participating in the Superhero Stomp:
Sarah was diagnosed with high risk acute lymphoblastic leukaemia when she was 3 years old in October 2012. It took her 3 months to get into full remission, which was the first challenge, as the goal of her treatment plan was to be in remission after 1 month. We were told that if she wasn’t in remission by the third month, she would have to switch treatment plans. Thankfully, she was, and she remained on this treatment plan until it was finished in February 2015.
Sarah remained in remission until July 2016, when a routine exam showed that her cancer was back. She was 7 years old. She was given a new treatment plan that was more intense than her first plan. This plan was for Sarah to receive 24 months of chemotherapy. Similar to her first experience, it took her over 3 months to get into remission instead of the one month goal. Due to this, her treatment plan was changed. Instead of two years of chemo, she began to prepare for a bone marrow transplant. Sarah had a bone marrow transplant on December 23, 2016 - right before Christmas. Her new chance at life was the best Christmas gift ever.
Sarah’s remission lasted until February 2018 when it was discovered that she relapsed again. She was 9 years old. We were so lucky that she was able to be part of a new treatment called CAR-T. Sick Kids only began having this treatment available at the beginning of 2018, so Sarah was one of the first patients to receive CAR-T right at Sick Kids. This treatment put her into remission again.
This time her remission lasted until September 2019. Sarah was 10 years old and fighting cancer for the fourth time. This time her treatment plan consisted of an immunotherapy drug called Inotuzumab to get her into remission in order to proceed to a stem cell transplant. In February 2020, her new immune system attacked her optic nerves causing her to lose all of her vision. With intense treatment of steroids, plasmapheresis, and immunosuppressants, she was able to recover most of her vision back over a period of about 6 months. In that time, she had three more attacks causing her team to increase her treatments. After her vision was stable for a few months, they began to wean her off of the steroids and the plasmapheresis. She had her last plasmapheresis treatment in December 2020, steroid dose in June 2021, and she is currently being weaned off of her immunosuppressants. Even though she has recovered most of her vision, she has not recovered all of her colour vision and with the permanent damage that was done to her optic nerves from these attacks, she has blind spots in her field vision.
Sarah’s world came crashing down again in October 2020 when her cancer returned for the fifth time. She was still receiving intense treatment for her optic nerve attacks when the leukaemia was discovered in her blood. She was 11 years old and having to start her fifth battle against leukaemia. Due to her optic neuritis treatment and the pandemic, her options were quite limited. But her amazing team found one option that we could try - 6 rounds of an immunotherapy medication called Blinatumomab. It was hard to get approval, but thank goodness, the approval finally came. Each round consisted of being hooked up to a small pump for 28 days to receive a continuous infusion of the medication. Each round started with a hospital admission. Sarah handled this medication very well. It was frustrating being hooked up for 28 days straight 6 times, but she got used to it pretty quick. She finished this cancer treatment in July 2021. This medication has put her into remission, and we are hoping that this is our miracle drug that has her finally have a lasting remission. She rang the bell at her last check up to celebrate beating cancer for the fifth time!
Since the very beginning of Sarah's cancer experience, Candlelighters Simcoe has been there for us. They have helped in so many ways - from support groups, providing us with information, gas and parking gift cards, amazing Christmas baskets to make Christmas easier while having a child on treatment, as well as making friends with people who are going through similar experiences. Plus so much more. They are an amazing organization that personally helps every single family in Simcoe County that has a child receiving cancer treatment.
Recent donors
Donation date | Donor name | Donation amount |
---|---|---|
Sep 16 | Grandma and Grandpa Tomlins | $50.00 |
Sep 13 | Lorrie Quinn | $100.00 |
Sep 13 | $25.00 | $25.00 |
Sep 11 | laurie f. | Undisclosed amount |
Sep 11 | Ian and Ann Hamby | $50.00 |