2020 will be our 8th year walking for and supporting CureSearch, and we have successfully raised more than $175,000! Thank you for your past and future support!
We formed team Hope for Sydney in 2013 after our daughter Sydney, then 3, was diagnosed with Philadelphia-positive acute lymphoblastic leukemia (Ph+ ALL). The Philadelphia chromosome is a rare subtype of leukemia, only present in 3% of children. Sydney completed her initial treatment protocol in August 2015, only to relapse in her central nervous system 22 days later. Sydney received a bone marrow transplant on Christmas Eve 2015; a perfect day to receive the gift of life from a complete stranger.
2018 was a tremendously difficult year for Sydney. She was admitted to the hospital on June 4th for unexplained swelling and severe back pain. Turns out, almost every disc in Sydney’s spine had a compression fracture; a result of chronic steroid use making her bones weak and brittle. And the swelling was Thrombotic Microangiopathy (TMA), a very rare disease which impacts your kidneys. After several months of trying to remove over 18 pounds of excess fluid weight with diuretics Sydney had to begin daily dialysis. Dialysis has worked tremendously for fluid removal and now is down to three days a week. However, Sydney’s kidneys have not rebounded and the Renal doctors don’t suspect they ever will due to the damage from the TMA. Sydney will need a kidney transplant once it is determined the TMA is controlled, her respiratory status is improved and she is physically stronger. After nearly 10 months in the hospital suffering from the results of the toxic treatments needed to get to a cancer free life, Sydney was barely able to stand and walk.
Today, Sydney is more than four years post bone marrow transplant and she remains CANCER FREE! She has made tremendous progress over the last year. Sydney has gone from barely able to stand and walk to getting around completely independently and even walking up and down stairs with just a little help. Even her respiratory status is improving, but she still requires continuous oxygen support but not nearly as much. She suffers from other long term side effects from her toxic treatment as well. Just recently we accidentally learned of yet another side effect. We found out from a scan of her liver that her heart is enlarged. We are meeting with a cardiologist tomorrow to understand what this all means and a treatment plan. But what we know from the reading is she has moderate to severe systolic function.
Our baby is the strongest person we know and she has truly amazed us with her will to SURVIVE! We are continuing to live a nightmare and it’s not cancer. This is why we support CureSearch – so other children can have hope for a cancer free future with less toxic treatments! Please join us to help fund research to find cures for pediatric cancers, so that one day this nightmare won’t happen to other children and their families.
-Karin Hawk, Sydney’s Mom
You can also follow our team on Facebook at: www.facebook.com/teamhopeforsydney