DIAGNOSIS: Hepatoblastoma


May 2020 was a bittersweet time for Rowan and her mom Rachel. Rachel graduated from veterinary school at the exact same time that 7-month old Rowan was diagnosed with Hepatoblastoma, a type of liver cancer which affects a few very young children.

Rachel was unable to start work for several months due to Rowan’s diagnosis but once Rowan’s treatment was complete, she was able to take a position at a practice in Colorado Springs and was due to start in February 2021. Unfortunately, the move was delayed because Rowan ended up in hospital on and off for 17 days close to their home in Iowa with an acute kidney injury. “Her kidney levels were through the roof,” explained Rachel. “The anti-rejection medications that she has to take can cause kidney damage and her kidneys were already very fragile due to chemotherapy.” Without having worked for so many months, their savings were starting to dwindle. She had no choice but to open Rowan’s Go Fund Me again especially with the delay in starting work, the cost of a move, and the anticipated out-of-pocket medical costs for Rowan once in Colorado. “We received an Orange Envelope soon after Rowan was diagnosed. Pinky Swear is part of our support team and it means a lot,” said Rachel.

The two made it out to Colorado finally on March 19th. Rachel started her new position for just one day when Rowan was hospitalized yet again, this time for an infection in her blood caused by the central line. It was very tough for Rachel to have to miss a whole week of work almost immediately and she is now trying to balance working, caring for Rowan and completing the massive amount of paperwork involving in getting all the medical supplies covered as well as hiring a nanny to care for Rowan at home while they await Colorado Medicaid approval. Once approved, insurance will be able to cover not only their prescriptions and equipment, but also private duty nursing in their home to provide up to 16 hours a day of nursing assistance.

As of May 2021, Rowan is doing very well. Her anti-rejection medications have been changed to spare her kidneys from further injury and liver and her team is currently in the process of weaning her off her current medications and on to new ones. “At some point she will need a kidney transplant but hopefully this will delay that,” explained Rachel. Rowan has had issues with eating but is now doing well, and she is almost walking. “She is standing up and holding onto furniture and on the verge of taking that first step which is so exciting. She’s also been able to experience bath time for the first time in a year which is something new for her and she loves.” 19-month Rowan also loves going outside in her stroller and on her balance bike.

Rachel has been able to connect with other special needs families in the Colorado Springs region and they are looking forward to maybe being able to get together at some point, although Rowan’s compromised immune system is always a big consideration.

“We are moving to the point of leading a more normal life,” said Rachel. “Ultimately, after completing the transition to Rowan’s new anti-rejection medication, we will only need clinic visits every 3 months. The community support we have received has been absolutely wonderful and we are so grateful to every person and organization that has helped us through the last year.”

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