I had to go for two haematopoietic stem cell transplants in 2014. My first transplant was not successful. I then had to undergo another transplant immediately after the first.
As healthcare professionals, we have made the choice to improve lives. However, we often get caught up in the rush and routine of work. Javier’s story on how he pulled through his six-month stay in the hospital is a reminder of why we do what we do and the passion we have for healthcare.
MY name is Javier Tan Jia Ye and I am eight years old. I have a very rare genetic disease called Fanconi anaemia, which is an inherited blood disorder that leads to bone marrow failure. My doctor told me that only four other people in Singapore have this disease. I was diagnosed when I was three years old.
I had to go for two haematopoietic stem cell transplants in 2014. My first transplant was not successful. I then had to undergo another transplant immediately after the first. My skin is now very dark and dry because of Graft versus host disease (GvHD). It is itchy but my mum always tells me not to scratch.
I was terrified of the pain. Sometimes the pain can be so bad it feels like, infinity on the pain scale! Once I had a bladder infection and the pain was so unbearable that I could not stop screaming! Another time, I had a bone infection in my leg and had to go for 12 operations within one month.
When I grow up, I want to be a scientist as I want my inventions to help other people. I want to bring joy and happiness to those whomay be in pain, in the same way that my family, the doctors and nurses did.
When the pain is too much to bear, I try to keep my mind on something else and not think of it. I play with my Nanoblocks or favourite superhero figurines instead.
I also befriended other young patients. I was staying in the isolation room for three months when a boy my age got admitted next door. He was sad about being in the hospital and I tried to cheer him up by giving him a pirate ship and I made him a card. We would Skype with each other and exchange notes. I would tell him to do activities that he likes to keep busy so that time passes faster.
The nurses are my favourite people in the hospital as they always cheer me up with encouraging words and notes. I made flowers, cards and little gifts for the nurses and doctors who took really good care of me. I also liked to entertain the doctors with my
dances.
After six months in the hospital, I was finally able to go home! I was so happy to be reunited with my family, especially my younger brother whom I missed a lot. I was also thrilled to finally be able to eat my favourite home-cooked food.
I returned to school in April this year and it has been challenging. Sometimes, I cannot keep up with my school work, or students would ask me about my appearance. My daddy and mommy have been helping me with my revision despite their busy schedules and have been such a great source of support and encouragement. I am very thankful to have such wonderful parents!
Yvonne Jie Jie (Jie Jie means “elder sister” in Chinese) was the nurse who spent the most time taking care of me when I was hospitalised in KKH. I knew it was her birthday month on one of my follow-up appointments and I made a birthday card for her.
When I grow up, I want to be a scientist as I want my inventions to help other people. I want to bring joy and happiness to those who may be in pain, in the same way that my family, the doctors and nurses did.
