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.

May 2020 was a bittersweet time for Rowan and her mom, Rachel. Rachel graduated from veterinary school at the exact same time that seven-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, Rachel was able to take a position at a practice in Colorado Springs. Unfortunately, the move was delayed because Rowan ended up in hospital on and off for 17 days with an acute kidney injury.

“Her kidney levels were through the roof,” explained Rachel. “The anti-rejection medication 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 in March. 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. She is now trying to balance working, caring for Rowan and completing the massive amount of paperwork involved 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 their prescriptions and equipment and 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 her team is currently in the process of weaning her off her current medications to try 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 three 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.”

In early April 2022, Rowan and Rachel were able to take a short break to a winter resort in Colorado courtesy of a Pinky Swear donor. This was a magical time, especially since Rowan likes nothing better than to be outdoors enjoying precious moments with her mom!

Rowan continues to experience some side effects as a result of her cancer and treatment.

“In September, she had to have surgery to correct a lower eyelid defect,” explained Rachel. “The doctors think her left pupil constriction will likely be permanent, but mostly I am just happy that her recent tests came back negative for cancer. A little pupil asymmetry will be the least of our concerns, all things considered!”

Rachel has not been able to look for work due to being Rowan's full-time nurse. Although a new nurse is about to start, she feels that signing a year-long contract with a practice is unfortunately unrealistic due to the ever-changing possibility that they will be left without adequate childcare. Rachel hopes that, soon, she will have the stability she needs to become a relief doctor to a few clinics around town.

“It's not the career I pictured, but it would offer the freedom to take time off whenever needed. All things considered, I think things are looking up,” said Rachel. “Rowan will start preschool soon, and if her nurse is a good fit, she will attend school too, which will be perfectly splendid. Rowan is also getting fitted for hearing aids, so I hope to get her into the school for the deaf and blind where she will be exposed to other children with hearing aids, and the transition will hopefully be smoother for her.”

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