Life Lessons from Journeying with Hong Yi

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Life Lessons from Journeying with Hong Yi

Caregivers become experts on their caregiving journey because every palliative patient is unique, gaining specialised knowledge and skills to provide the best care possible for their charge. In this interview, Doreen reflects on the lessons she acquired as she accompanies her child, Hong Yi, on his final journey.

Doreen and her son, Hong Yi, were referred to the palliative care team at KK Women’s and Children’s Hospital (KKH) when Hong Yi, then six years old, was battling his second relapse.

Doreen and Hong Yi were initially referred to the palliative care team at KK Women’s and Children’s Hospital (KKH) when Hong Yi was six years old and undergoing active treatment for his second relapse.

How did you feel when Hong Yi was referred for palliative care?

To be honest, I felt disheartened. To us, and also to the public, palliative care means the end of the journey. When the oncology team had no more treatment options for Hong Yi, the palliative care team stepped in and became the primary team supporting him and us, as parents, on his final lap. We realised how crucial the palliative care team was.

How did the palliative care team support you both?The palliative care team served as a liaison between us and other expert teams. They were our voice, updating the various teams on Hong Yi’s daily condition and relaying our requests. We were spared from having to repeat the same information, and this arrangement minimised disruptions for Hong Yi. The palliative care team also gathered medical input from the other teams for us. Together, we made decisions that would be best for him.
The palliative doctors were very experienced and professional, such that they were able to advise us on an accurate estimation of how much time we had left. It preempted, prepared, and enabled us to more effectively plan our remaining time with Hong Yi and make the most of it.

What were some of the biggest challenges you and your child faced?

For me, it was witnessing Hong Yi’s deterioration and suffering while also anticipating the day he would leave us.
For Hong Yi, it was living with pain every day and having to accept the negative changes in his body, such as being hooked to drips/IVs most of the time, being unable to bear weight on his legs and thus unable to walk, losing vision in his left eye, and becoming increasingly bedridden.

Can you share some memorable moments from your child’s illness journey?

The palliative care team, in addition to looking after Hong Yi’s physical well-being and ensuring that his pain was managed adequately, did their best to help realise his wishes. This entailed behind-the-scenes negotiations with other teams on rules and regulations, readjustments of schedules, and even taking up certain tasks themselves. Essentially, it was a ‘we ask, they provide’ type of service.

They enabled him to make short trips outside hospital — staycations, having hotpot, returning to school, watching movies at the cinema, as well as feeding the fishes in the hospital’s pond when his health further deteriorated. These activities may seem insignificant, but to Hong Yi, who had been hospitalised for months with no possibility of being discharged, it meant the world. Having his wishes fulfilled injected so much joy into him. He would reminisce about how much he enjoyed the staycations, bring up funny excerpts of the movies over which we laughed together again and again, write cards to his friends, and look forward to returning to school to spend time with his friends and teachers.

We were comforted that Hong Yi retained these wonderful core memories on his final journey.

Has your perspective on life changed in the last few months?

Yes, the freak infection in March that cost Hong Yi his small intestines, stalled his cancer treatment and ultimately led to cancer taking over his body caught us completely off guard. It was a huge blow to us and proved how unpredictable life can be, and how it seemed fated that our efforts would be futile. We learnt to treasure and enjoy each day as if it were the last.

What advice would you give a caregiver like yourself?

Work with the palliative care team to make the most of your loved one’s limited time. Each day is a gift. Talk it out, don’t be afraid to fight for your loved one, but keep in mind that their safety comes first.

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