A father's love

Most people takes simple things in life for granted, mainly because those are the small things that is part and parcel of the dull recurring theme of life. 

For medical people, we may never understand what is the real world going through the minds of our patients until we become patients ourselves, one 'fine' day. 

The article below delineated the world at the other side of the desk.
A world where there can be simple solution other than oral sedatives and general anaesthesia.
A world where in dedication with a bit of desperation, the love of a father had gloriously triumphed over the routine medicalisation of children going through a supposedly non-invasive procedure.

TheStar, Sunday May 6, 2012

Practice makes perfect

By HAZLI HASHIM

A father comes up with an ingenious idea to prepare his daughter for a crucial medical procedure.
MY daughter, Alyssa Adriana, was diagnosed with Sacrocogcygael Teratoma, a tumour situated at the end of her spine, in April 2007. She was about two-and-a-half years old then.

She underwent surgery to remove the tumour and the lab tests confirmed it was malignant.
After her wound healed, Alyssa needed to go through five chemotherapy sessions. Watching your loved one endure pain and suffering is not easy, especially when all you can do is to provide love, comfort and moral support. My wife, Alyssa and I will always be grateful to all those who helped us get through that tough time.

By early 2008, we were told that Alyssa did not need not any more chemotherapy. But she still had to go for blood tests occasionally, and a CT scan every three months to make sure everything was fine.

At ease: Alyssa playing with the mock CT scan machine which her father built. 

Before the scan, the doctors would either give her oral sedatives or do a general anaesthetic procedure. I read that regular sessions of the latter are not good for the body, especially for young children.

Besides, it’s difficult to do a CT scan on children if they are not fully sedated. Even grownups get nervous when they are put through that big tunnel, let alone a three-year-old.
I asked the oncologist if I could teach Alyssa to keep fully awake yet lie completely still the next time we did the CT scan. He smiled with an expression that said, “I would very much hope you can accomplish that, but it’s easier said than done, Sir.”
Back home I started thinking of what I should do to make this happen. Finally, I had an idea – build a mock CT scan machine at home so Alyssa could practise lying in it.
It took me two weeks to build the frame and body using discarded boxes from the office. When Alyssa asked me what I was doing, I told her I was making a machine for her to play with. She seemed excited and very curious and kept asking when she could start playing with it.
I took some white sticky tape and patched up the whole thing to make it look more like the real thing. There was a tunnel in the middle where you could slide in and out. I then took two box containers with wheels underneath, placed them together and built a sliding bay for Alyssa to lie on.
Inside the tunnel, I took a flashlight and switched it on and off several times, to simulate the laser beams directed at the patient before the procedure begins.
Alyssa and I played with the machine almost every day, with my wife joining in occasionally. To my amazement, she found it very “humorous” – I had trouble making her stop laughing while she was inside the tunnel.
After a while, Alyssa seemed happy and at ease with the mock scanner. She even played with it by herself sometimes; she would pretend to be the doctor and scan her stuffed toys.
When the day came for the actual scan, I did not know how she would react when she saw that “giant tunnel thing” for the first time. Before the procedure, she had already cried her lungs out when they jabbed her hand to make an intravenous line.
I held her as we walked from the paediatric ward to the scanning area, on the other side of the Universiti Malaya Medical Centre. She had stopped crying by then, which was good. I kept reminding her of the fun we’d had at home playing with the “tunnel thing” and told her that she was going to go through a bigger tunnel in a while. She just smiled.
In the scanning room, she looked a little nervous, but was not crying. I held her hand all the way through the procedure and it was over in less than 10 minutes. The doctors, nurses and technicians were all amazed that my four-year-old was so calm and was able to go through the whole procedure fully conscious.
I told them we had been practising it at home for quite some time now with the mock CT scan machine. They were all very impressed with the whole thing – it was a success!
I was so happy, and proud of Alyssa, who continued to go for her “fully-conscious” CT scans at the hospital, which all went smoothly.
My daughter is now a healthy eight-year-old who lives life to the fullest. Her last scan was in February 2010. She still needs to go for blood tests twice yearly; her most recent test was in March.
Alyssa, be strong and keep on fighting. Ibu and Ayah love you very much and will always be there for you. You will never walk alone.

For the record, this novel idea cropped up 4 years back. As for today, I wonder if this idea was widely shared among parents with the same predicament.

I truly believe it would be an awesome idea to have the supplier of CT scan to part with a small amount of their mammoth profit by building a smaller version of mock CT scan in playroom of the Paeds ward.

Perhaps that would greatly reduced the children's need for sedatives or GA before a lifelong routine procedure.