Yvonne Foong: Fighting NF

I wrote what I did yesterday to share with my friends and supporters why I’ve been trying to get the best possible healthcare. Awhile back, I wrote that the cost of every surgery is the least of my concern. As long as I am physically capable, the money can be earned. Although we have to exert our energy to carry t-shirts and books, although we have to visit different places to sell them, although we need to work for the money, but we are capable so why not?

As you can tell from Dr. Lekovic’s e-mail to me, the surgeons at HEI would review my recent MRIs at conference from time to time on their own accord and consider my every course of treatment agaiust my genetic disorder as a whole. They take my entire lifespan into account while deciding the best course of treatment. Their concern is not just to provide me with temporary relief but to maintain the quality of my whole life.

I said before that by going to HEI for surgery, I am doing it for my parents too. Because I have seen their reactions to Aunt Ivy’s healthcare when her cancer entered the terminal stage. It was very harsh on my parents and I do not want them to go through it again.

We may need to carry books and tees today. But with poor medical treatments and management, they might need to carry me instead.

My parents are always at the back of my mind. When I found out that there was a tumor impeding my only usable optic nerve in 2007, I feared for the worst and appointed Rockwills Trustees to manage my healthcare finances so that my parents will not be implicated should I become unable to take care of myself. At the same time, I also wrote my Will.

By switching to surgeons who are unfamiliar with my case history, the long-term cost may far exceed the price of doing each surgery at HEI.

It’s a blessing when we can work.

We still have a cabinet with some of Aunt Ivy’s belongings at home. Aunt Ivy was my dad’s younger sister. One day last year, I searched through the cabinet and found a medical appointments card with Dr. Ng Wai Keong’s name. I recognized his name. Dr. Ng is a Neurosurgeon who sees patients at Sunway Medical Center. He treated Aunt Ivy at Subang Jaya Medical Center between 1999 to 2000.

For many years after her demise, I didn’t know what took Aunt Ivy’s life or why did her body deteriorate the way it did. Nobody spoke of the reason or what her doctors said. My parents did not know anything at that time but to go along with the flow.

All the missing pieces fell into place when I saw Dr. Ng’s name. There could only be one reason why someone whose cancer went into remission need to see a Neurosurgeon 10 years later – metastasis. They say Aunt Ivy had ‘nose cancer’ and now we know that she saw a Neurosurgeon before her death. It means her cancer cells spread to the brain. This was the last stage of cancer. It was terminal. We can know that cancer cells have metastasized to the brain by performing a simple MRI from several months to years before the patient dies. This means they probably knew that Aunt Ivy was going to die very earlier on. But why were my parents not informed so? I am sure that if someone explained to my parents about the imminent death, they would have made Aunt Ivy’s needs their priority and sacrifice their own needs too.

As far as I remember, somebody took control of Aunt Ivy’s finances the first time she was admitted to SJMC in 1999. Aunt Ivy was the person who sent me to ballet lessons and anything that I wanted to learn. While Aunt Ivy was in hospital, the person who took over her finances told me that all these must stop because Aunt Ivy was ill. I accepted it because I could see that Aunt Ivy wasn’t feeling well.

Soon, Aunt Ivy was discharged and sent home – the home that we still live in. She had always lived with us.

Aunt Ivy bought this house that we live in more than 10 years before my parents were married. When Dad suffered a brain hemorrhage and was in a coma for one month when I was 3 years old, Aunt Ivy mortgaged the house to pay his medical bills. Aunt Ivy cared a great deal about Dad. After his stroke, Dad became dependent and Aunty Ivy took care of his many needs. That includes my upbringing too.

Naturally, it was very hard on my parents when her cancer came back. To make things worse, nobody explained to them that Aunt Ivy’s cancer had entered the terminal stage and what they should prepare themselves for. Later, we did not even receive a copy of her death certificate.

Without a clue about what was going on, my parents were criticized and insulted. Naturally, my parents also reacted to these attacks with resentment and anger.

They really didn’t know anything. Even I didn’t know.

Aunt Ivy lived for another two years until her demise in mid-2001. Her wake and funeral was held over two short days at home before she was cremated. Right after she was cremated, an entourage of aunties packed themselves into Aunt Ivy’s bedroom and rummaged through her belongings claiming to be helping us clear her things. My dad was furious. He felt it was too much of these people to be discarding Aunt Ivy’s belongings on the day of her funeral.

That year was 2001. In 2005, we received a letter from a lawyer’s office. Someone sought to apply for joint-administration to the house that we live in. The house deed was still under Aunt Ivy’s name. Before the house can be sold, the name on the deed must be transferred to everyone who has a legal right to inherit the house. Not even a single name can be left out unless the party gives up his or her share in writing. The person who hired a lawyer to seek a joint-administration was not my dad. In fact, he is adamant to never move from this house and would rather die with it. Ironically, the appointed lawyer was Aunt Ivy’s friend.

That year was 2005. I had just lost my residual hearing and needed to start raising funds for surgery. The lawyer’s letter came as a threat to my family’s harmony at a time when I needed help most so I sought assistance from my friend Cordy who has a degree in law. Cordy sought the advise of her friends who are practicing lawyers. With their advice, Dad and I went to obtain a caviet over the house so that no one could touch it without my dad’s consent.

My parents maintained that someone has been trying to take advantage of us all these years. I took their words with a pinch of salt because I didn’t believe people could be so mean. I told myself that my parents were over-reacting.

But I also didn’t believe what people said about my parents. After I was diagnosed with NF in 2002, someone would call me up and speak ill of my mom. I knew enough to shut off my mind and not hear a word. Because Mom had warned me that nobody should insult your mother to you. Anyone who does that is malicious. That’s exactly what happened to her eldest brother who became resentful and abusive towards my maternal grandmother. I have witnessed his abuses and so I believed mom’s warnings were true.

My parents are not very educated so it is easy to mislead them. To frame someone, we only have to aggravate them before they say or do things out of anger to give you enough ammunition.

My parents were furious by what these people did when Aunt Ivy fell ill and the things they said out of anger were enough ammunition for some people to speak ill of them within the extended family.

As you can tell from my past, it will really mean a lot to my parents when I can be treated by my HEI surgeons who would go out of their way to help me. In America, everything requires due process. Every detail of my healthcare is documented in black and white.

I have also appointed Rockwills Trustees to manage my healthcare finances because of my past experiences.

I may not always agree with my parents and I can be unhappy with them too. But they are still my parents and I will do anything to protect them.

I thought that I will never know who was right or who was wrong, until I saw that card and realized that Aunt Ivy’s cancer became terminal while my parents were ill-informed.

Waiting for friends to arrive in the photography studio yesterday, I walked around like how a ballerina should. Imagining my ballet school principal Ms. Lee Lee Lan sitting at the front, I smiled at her before pushing one foot forward with pointed toes.

This was a basic exercise that has become a challenge to me. After several rounds of trying to walk this way, my heart nearly thumped itself out of my chest. My right leg could no longer do it properly. I can never point my right toe anymore. Being reminded of the things I have lost since my first spine surgery put me at the brink of tears.

Surgeons at the Kuala Lumpur General Hospital removed several tumors along my spinal cord in 2002. My diagnosis was delayed for three years so by the time I went into that surgery, I could hardly walk and needed to use the wheelchair. After surgery, I could sit, stand, and walk again with intensive physiotherapy. It was a big blessing considering that we were terribly late to deal with these tumors.

Surgeons managed to remove the concerned tumors but they scarred the involved and adjacent nerves especially those that control my right leg.

I took some photos of my feet to show you what damages to spinal nerves can do in the least.

As a result of these damages, I can no longer:-

1. Bend my right knee more than 45 degrees while standing up.
2. I can no longer squat properly.
3. I can no longer bend my knees to pick things up from the ground and have to bend my upper body down instead.
4. I can no longer jump.
5. I can no longer run.

We are now raising funds to remove tumors at my brachial plexus by my surgeons in Los Angeles. I chose them to have the highest chance of preserving my right hand’s function. Imagine if the above damages happen to nerves controlling my right hand while I am right handed. It means that I would not be able to hold a pen, carry things or type well anymore. That’s just the least of all possible complications from this surgery. I have had seven surgeries with my surgeons in L.A. with outstanding results so I know by heart that they will do their best to avoid damaging nerves.

I hope that people will believe me on how important this next surgery is.

Yesterday, I had dinner with my buddy Kenrick who I’ve not seen since Rajan’s funeral on 1st January. Kenrick was kind to travel all the way from his house in Kota Kemuning just to have dinner. He graduated with a bachelor’s degree in communications recently and now looking for a job. Throughout dinner, I thought how grumpy Kenrick looked. I expected to have an easy-go-lucky company, not a grump.

The reason I asked Kenrick to dinner was because I wanted to try being relax and not so cooped up in the presence of a male friend. Kenrick as I remembered him always made me giggle. But when we parted after dinner last night. I also remembered that Kenrick has changed over the last two years which I knew but forgot. Kenrick in my memory was still 17 years old. My memory of him was six years outdated.

I didn’t tell Kenrick the whole reason for wanting to have dinner with him or he might not have come. It has to do with another friend of mine. Tiam Loong seemed more serious after I came back from surgery in December last year. It was quite shocking how a person’s demeanor could change so much over my two weeks of absence. I could not help being self-conscious and suffered myself to wonder if I had said or done anything that caused him to change. Since I tend to have a serious demeanor myself, I feared that people around me might also be changing their demeanor to adapt. In that case, it might mean that I make them feel cooped up.

But after meeting Kenrick, I could see that Tiam Loong isn’t exactly more serious. The better word would be ’matured’. At least, he is not grumpy.

A saying comes to mind. When we perceive something as bad, remember it could be worse!

My friend Kai Boon’s father had a stroke last week and was admitted to hospital. Kai Boon said that they put a shunt through his father’s skull to drain blood from the brain. He asked us to pray for his father. The blood needed to keep flowing out for him to live. Kai Boon left a message on Facebook which said that it’s a torture to see your childhood hero on a hospital bed.

I was reminded of a scene from my early childhood. My cousin sister Mui Quan was carrying me in her arms. We were in a hospital ward. There was a bed in the ward but I could not see who was lying there. Mui Quan stood about four feet away from the bed. I don’t remember hearing anyone speak. I had no clue about what was going on.

Mom left me to be cared for by my maternal grandmother during the one month dad was in a coma. At grandma’s place, I didn’t know why I had to stay there but I liked being with grandma.

When Mom brought me back home, dad would not tell me bedtime stories anymore. He changed into a completely different person, lethargic and apathetic.

When I woke up from my sleep this morning, I knew that I must hang up the OYA poster. If dad points it out to visitors the way he does to my AYA Dream Malaysia certificate, let him. I am probably all he has.

I will also frame up the OYA certificate and hang it next to the AYA Dream Malaysia certificate, and I will buy a glass cabinet to display my plagues in the living room.

Dad is very old. He will be 68 years old this August. When an old man like him who is a little senile shows off his daughter, I believe no one will fault him for it.

Maybe this will help to restore his self-esteem and won’t release his bitterness at mom by shouting at her as much.

Sai Fun took mom and I to the F & N Outdo Yourself Award prize giving ceremony at Royal Selangor Golf Club yesterday. She also took some shots with her camera phone.

Three OYA awards are given out every year. This year’s awards went to:-

1. Berine – the 13-year-old boy who saved two young girls from drowning.
2. A group of teachers and two security guards who saved their students when a suspension bridge collapsed during an excursion.
3. Me

We arrived at 11:00am as advised. We met En. Syariff first and talked with him while we waited for the ceremony to begin. Elsy then led us to our table where we met Berine and his father. Berine was very shy and quiet. I tried to strike up conversations with them but they talked very little. Sai Fun explained that they came from Belaga in the deep interior of Sarawak and may not be used to conversing with strangers who do not speak their tribal language. That was understandable.

I feel extremely honored to meet these brave and simple people.

Read this news in the News Straits Times here.
And The Star newspaper.

Thank you F & N and the panel of judges.

Now, should I hang this up or not? Mom said we shouldn’t. She is sure as hell Dad will point it out to whoever visits. He is already doing that to my AYA Dream Malaysia certificate much to our embarrassment.