I can’t believe that I am starting a fundraising page for my brave nephew Jackson. We received news at the end of June about Jackson that has left our family and friends at a loss for words. He has cancer…….
My nephew, Jackson was born a healthy baby boy in Thompson, MB, with Big blue eyes and a head full of blonde hair. Jackson is an amazing boy who is loving, compassionate, empathetic, generous, hilarious, brave and resilient. He loves to sketch, read comics, and has a passion for all music. He especially loves spending time with his family, his brother Wyatt who is his best friend and his friends.
Jackson's liver journey with Biliary Atresia began when he was 54 days old, when Jack’s dad (Jason) noticed how jaundice he looked. The next day at his regular Mid wife appointment, she sent Jack straight to the Emergency where they directed Nancy (Jacks mom) and Jack to head to Winnipeg ASAP. The next morning Nana, Nancy and Jack headed to Winnipeg.
After 15 days of non-stop tests, Jackson was diagnosed with Biliary Atresia - a rare form of liver disease. Jackson then, had surgery called a Kasai Procedure at 69 days old. They removed his gull bladder and used some his small intestine to recreate his biliary duct. This procedure needs to be done within the first thirty days of life for success rates. After the surgery the surgeon explained to Nancy and Jason that the Kasai surgery was a palliative procedure, and hopefully would buy Jackson a few years, but that someday, he would need a liver transplant.
In the last 11 years Jackson has done amazing. He is in the 90th percentile for height, weight, etc.… He does have an enlarged spleen and several allergies. Also, at the age of three Jack was diagnosed with EOE- Eosinophilic, which is a swallowing disorder that effects the esophagus.
In the last 11 years, Jackson has had specialist appointment’s every 6 months, ultrasounds and scopes done. This past fall, Jackson had his routine ultrasound where they found a mass on his liver. He then had an MRI in November and a week later a follow-up ultra sound. This was just before Christmas which was so stressful on Jackson's parents and everyone that knew.
He was scheduled to have a biopsy of the mass the last day of his spring break. With his mom and dad, they met with the pre-op team and surprisingly the radiologist that was going to the biopsy. The next afternoon, Jackson’s parents received a call that the Dr.’s decided to get a second opinion from the liver specialist at the Sick Kids Hospital in Toronto. On May 13th Jack and his mom flew to Toronto and met with the Liver Transplant Team. Jack had more tests done and another MRI. A week and a day later, Jack and mom flew home. Then they received another call from Toronto that they wanted Jackson to come back with his mom and dad. Off they went again leaving Wyatt at home with Nana and the two pups.
This time in Toronto, Jackson had a trillion tests done, as well as five biopsies of his liver. Due to Jackson having an enlarged spleen which is result of Biliary Atresia, his white platelets were too low for the biopsy. He then needed a platelet transfusion and after 11 years Jackson had his first overnight at the hospital since his Kasai surgery. Many B.A. kids tend to be smaller and do spend time in and out of the hospital for various reasons. Jack had been lucky. He ended up staying at the hospital for two nights as they wanted to make sure he didn’t have any bleeds from the procedure. He also had to lay on his side for 6 hours after the biopsies. A week and a half later Jackson’s parents got a call that no parent should ever receive. Jackson was diagnosed with Hepatocellular Carcinoma a form of Liver cancer.
Jackson's liver is already compromised due to the Biliary Atresia which means the cancer cannot be safely removed without having a liver transplant. A transplant is needed now. Jack has been added to the deceased donor list and his family and friends are in the process of being tested to see if they could be a live donor.. The magical thing about a living donor is your liver starts to regenerate almost immediately.
Despite everything that Jackson has been faced with in his 11 years, he has remained brave, stoic, positive and has retained his sense of humor.
Jackson and family are heading back to Toronto for the third time as the Doctors will be performing a TACE procedure which is a form of Chemo that should shrink the Tumors, to buy time while waiting for a liver. Nancy and Jason are now on their third trip to Toronto and there will be many more, including when Jack has his transplant. As a family including Wyatt they will be in Toronto for up to two month during the transplant recovery, which means missing work. Also, the donor will have a long recovery time as well and will need to go to Toronto numerous times for tests and the transplant procedure. I would love to take the burden of loss of income, lodging in Toronto, bills, food and etc. away from all involved. If you could spare anything, my family would be so great full. Thank you everyone, for all your support and love and please keep Jackson, his family and his donor in your thoughts.