Yvonne Foong

I wonder if my tummy is releasing enzymes more than necessary to digest food. It has been some time now. A bowl of oatmeal that used to last me an hour now feels as though it never arrives in my tummy. A tuna, cheese, and butter sandwich I had for lunch today was gone within half an hour. When Cheryl and I went for McDonalds yesterday, I had Fillet’o’Fish and Banana Pie but got hungry again in an hour. As if flooded with enzymes I feel discomfort close to gastric pain as soon as the unusual hunger sets in.

So I have been having cups of Milo, coffee, or milk in between meals. Varying portion sizes does not make any difference. I had a plate of fried noodles with egg tofu and vegetables last Monday but that too, vanished too soon. And drinks do not help much.

From the things I read, it is said that the vagus nerve is stimulated when we chew, and it is the vagus nerve that trigger the release of pepsin to digest protein. But I’m not on a high protein diet. And there seems to be no other abnormalities possibly be related to organs mediated by the vagus nerve.

While reading up on my tumors that could be related to this problem, I was once again reminded of my place in life right now. Too often, I forget that I’m living on borrowed time. I’d become assertive and want to do everything possible. I want to study more and further than most. I want to press for political and economic reform, be a spokesperson of rare disorders, and a better encouragement to people. I want to show the world how a person like me can live better than healthy people. I want to push limits and break boundaries.

But when I read about the tumors I have, I remember how fragile I really am. All my bodily capabilities can be gone in a day without notice. One example is the Jugular Foramen Meningioma that involved the ninth and tenth cranial nerves. If it grows to further impede these nerves I might not be able to talk or swallow anymore. The tenth cranial nerve also mediates the heart and other vital organs. My forehead feels heavy these days, but if I remove this tumor I am afraid of losing functions controlled by frontal lobes of the brain. If my spine tumors grow, I might not be able to sit up like this in front of the computer , type or wriggle my toes.

That’s just a few of the many possibilities. There is still a great amount of tumors I have yet to be addressed.

If my odd digestion rate is indeed related to a tumor somewhere, so what? How many problems can I solve? If I try to save one, I might lose the other. And they are going anyway, so why save?

Well, the digestion problem may not be so complicated after all. But it’s still worth thinking, isn;t it? I guess life is beautiful because I choose to make the best out of it. I would hate for anyone to give up on me even before I give up myself.

A team of ear, nose and throat specialists and neurosurgeons at the University Hospital of Navarra, led by doctors Manuel Manrique Rodríguez, specialist in ear, nose and throat surgery and Bartolomé Bejarano Herruzo, specialist in paediatric neurosurgery, have successfully operated on a 13 month-old girl from Murcia, who had been born deaf due to the lack of auditory nerves. She is the youngest patient in the world who has received an auditory implant in the brain stem. As a result of the operation, the child has begun to hear and started language development. READ FURTHER

Yvonne’s comment
This case shows the wonders of medical research and advancement. It is such hopes that motivated me to raise funds and acquire the ABI implant no matter how difficult it was. Even though hearing restoration will not come close to normal hearing, I believe it is still beneficial to have any sound perception at all. Each ABI recipient and her progress contributes to research to improve the ABI. Look at this baby. How wonderful it is to see her finally respond to sounds. She can now learn and acquire language skills too. Sound perceptions enhances brain development. Isn’t that great?

Dad had an Echocardiogram done at UMMC couple of weeks back. I skipped classes on Thursdays to bring him there. A week after, when we were supposed to go back to see the doctor, a family matter cropped up and dad’s appointment had to be postponed. That was three weeks ago.

Cheryl helped me call the hospital to set a new appointment, but they kept diverting her calls, some left unanswered and no dates could be made.

This means I have to go there personally just to make an appointment. Then bring my dad there again.

But the Cardiology Clinic see patients on Thursdays only. I already missed a few IR classes taking dad to the hospital. If I miss somemore, I am afraid of scoring badly in exam.

Then I worry. What if we wait too long, and the hospital being so inefficient, loses my dad’s ECHO records? Would I need pay for it again?

Wish I had a sibling to help share this responsibility. I also want to motivate my dad to remain active. But with the things I have to do and difficulty talking to him, I feel tired and apathetic just seeing him idle. I feel sad looking at him. I know he’s not a bad person and he knows how to love others. But it’s so difficult.

I don’t drive and mom works 8 hours a day, sometimes 12.

Here is one of those things you’ve gotta plan ahead and money is not necessarily a main concern.

In the past one year, I have been getting my MRIs done at Assunta Hospital through a Neurologist inexperienced with NF. I paid him consultation fees just to get him send me for a scan cuz you need a doctor for that. You can’t see the radiologist directly, not in Malaysia at least. I chose Assunta, because it’s the cheapest option near home.

Shh… don’t get me started with inefficient bureaucracies in UMMC.

But that doctor was not able to do informed assessments of my MRI results. He also said I should see a Neurosurgeon and suggested Prof. Benedict at SJMC.

Four years ago, the Neurosurgeon at GHKL too suggested Prof. Benedict when I wanted a second opinion. The former planned to put me through SRS which I read is not advisable for Acoustic Neuroma caused by Neurofibromatosis.

I didn’t go to him then, because Dr. Friedman soon took me up pro bono.

I need to get a full brain + spine MRI every six months, and the next should be done in May, next month. Instead of going to Assunta and then bringing them over to SJMC for Prof. Benedict, I think it might be wiser getting scanned in SJMC.

It costs twice as much in SJMC. Hopefully for the better.

I believe doctors and radiologists should have a good working relationship, so when time comes to evaluate patients’ MRI scans together, the job can be done effectively. Both have their own special skills to apply in this interpretation of pathology reports.Like two pieces of Jigsaw puzzles side by side.

So when something happens to me, I’d be sent to the hospital, my Trustees called, and if my doctor, radiologist, and medical records can be in the same hospital, all the better.

I just want to make things easy for my caretakers. Fortunately, I have the luxury of deciding this thanks to my donors.

Ah, it would have been better to assign Yeeu Jen the first protector of my trust account. Since he lives nearer and his working hours more flexible, being one of the three partners of the family law firm.

Imagine this.

Alfin (Trustee): Ring. Ring. Hello Cordy? Yvonne in hospital. Emergency. Need your authorization for payment.

Cordy: Alamak! No car. How to go?

Cordy: Ring. Ring. Hello Yeeu Jen. Yvonne in hospital. Emergency. Must pay now.

Yeeu Jen: NOW????

Cordy: I would go. But no car. You live nearer.

Yeeu Jen: No need to work ah? Where are you?

Cordy: Office, duh! Damansara Utama.

Yeeu Jen: Me also what.

Cordy: Huh? Not Shah Alam?

Yeeu Jen: I work near where you work.

Cordy: Oh, good. Let’s go together.

Yeeu Jen: Be there in 5 minutes. Eh, come down and wait. No parking at this hour. Faster ah.

Dooootttt……

(in SJMC)

Prof. Benedict: We’ve requested and received her previous MRI records. But there’s something missing here and we need the Radiologist in charged to clarify. Meanwhile, surgery will be on hold.

Assunta Bursary: Pay first.

Cordy: So who go?

Yeeu Jen: You go lah! My God.

……..

Just kidding!

When Holly told me she contacted the governor of Arkansas, I kept thinking it was the senator. But when she said the governor’s office could not help her after an exchange of information, I got curious and, “Oh! Of course! The governor!”

So I suggest that Holly contact Arkansas House Representative Robert Moore, who is in his first term. The next election is November 4, 2008 so contacting him now is about right.

Holly asks me why should the Representative help her?

Because representative election happens every two years. Mr. Moore likely wants to be re-elected. To get that, he needs to win the support of people in Arkansas.

Why not the senator?

One senate term lasts 6 years. Hence, senators are less pressured to serve the folks back home. This frees them up to focus on legislative matters in the upper house of Congress.

Why not the governor?

The governor of each state is the chief executive who manages state affairs. They do play a legislative role with the power of veto. But I would think their pressure to win support is less considering the four year term. Their concern is directed at the people in general, instead of for each and every one of the people. Ah, very abstract, this one.

How should the representative help her?

I haven’t much clue right now, but Mr. Moore forwarded two bills concerning Medicaid at the 2007 86th Arkansas General Assembly. While this might not mean he’s particularly into health care concerns, Holly’s plight might just strike a chord. It would be helpful when Holly decides to push for A.B.I coverage in the local Medicaid program.

But right now Holly isn’t here to submit a bill. She’s here to raise funds for surgery. I believe her responsibilities in raising a toddler is central to her cause. The question now is why should the representative help her? Looking at my own story, politicians once helped me because I first helped myself and when I already have some media exposure.

While sounding manipulative, this is how the current system works. So I would suggest Holly do something that puts her in a favorable position. She could join a local support group for mothers of young children, where many are likely to empathize. Share with them her need for surgery. Then get some folks together and write to the representative.

Suggest a fundraiser and appeal to the representative for his support.

Just my two cents. Ok, I’m back to reading this and write my thesis. I don’t understand why all writing assignments have to due on the same date!

I adjusted some words in the introduction here to better reflect my perspective on NF. I can’t begin to tell you how wonderful NF has been. I thought people need to know the severity of this illness, at times more disabling than cancer.

But I was wrong. As I age, meet more people, and experience new things, I gathered that NF isn’t so bad after all. It may be painful at times, but pain is a necessary course of life in order for us to know God. Some people may have lost all their family members to natural disasters, their homes shattered,they run into debts. They may feel the worse is upon them. But somewhere out there, someone will always be suffering more. After we have suffered and stand up again, we would look back and realize it wasn’t as painful as we thought, it was even worthwhile!

I know people who decided not to marry because of their genetic disorders, some regret having children who turn out unhealthy. My mother used to think like that. But today, she has become much simpler. She no longer looks back to ask, “what if”. She looks back so that she can look ahead.

Some people may think those with illnesses are a burden. But have you ever consider the possibility of you becoming disabled any minute? Will you rather die? But God may not allow you to die. You’d be suspended between life and death. You’d pray for others to take pity of you and care for you just as your mother had.

I haven’t begin to say genetic errors could be very specific and hidden. Genetic testing today can find out the exact NF we have. Not every NF1 and NF2 gene is coded the same. What does that tell you? It means all of us have unique genetic codings. If the error does not manifest into NF, it may give you personality and mental disorders, or you may be easily tired or stressed. In Psychology, we call this the Diathesis-Stress model. Chances are, many of us have genetic errors hidden, but when met with a triggering event, may manifest into problems that cause us to be dependent on others too.

So if you think NF is bad and you’re very healthy, think again.

There is actually a way to correct my tilted eye. It’s called Strabismus surgery. I did that surgery as a toddler but my eye went back to it’s position soon after. Maybe technology has improved since, but I wouldn’t try it again.

There is also a way to correct my smile by grafting a nerve from the tongue. But I won’t do it.

Because I have observed the people around me. Girls no matter how pretty will always have something they’re insecure with. And guys, no matter how pretty their girlfriends are, will always have something they’re not happy with. Relationships still fail.

So why bother? Spending so much money to look good only to drive yourself further away from true love is real stupid. Seriously.

I want to prove that despite the way I look, I can be more successful than the most beautiful girls and handsome men. And my measure of success is determined by God.

By the way, I received another invite to appear on TV. Yay!

Dear Yvonne,

I am writing here to inform you that a current account name has been opened with the following details on 25th February 2008:

(a) Account name: Rockwills Trustee Berhad—Yvonne Foong NF Trust

(b) Account number: 514235805099

(c) Branch: Malayan Banking Berhad (MAYBANK) of Kompleks Bandar, Jalan Klang Lama, Kuala Lumpur.

Thanks and regards.
Alex.

_______________________________

Finally! That’s my new trust account managed by Rockwills Trustee!
Rockwills is also my will custodian.

From now on, please direct all your donations to the above mentioned bank account.

If you want receipts
Alternatively, send your cheques written out to Rockwills Trustee Berhad—Yvonne Foong NF Trust, write your name and address behind the cheque. Mail it to:-

Alfin Majid
Wisma Rockwills
No. 62 Jalan 1/31A,
Off Jalan Klang Lama,
58200 Kuala Lumour

Tel: 03-7781 1993. Fax: 03-7781 2993

How does the trust work?

Purpose: My medical fund was previously held in my personal savings account. To provide my supporters more accountability, I hired Rockwills to manage and oversee my funds. The trust is construed and governed by The Trustee Act under the laws of Malaysia.

Protectors: In the event of emergency, or when I am unable to act and decide for myself, my protectors will come in to assist the trustee in
managing my healthcare. eg. when deciding whether to contract hospital A or B, the trustee will seek the opinion of my protectors. I have appointed three protectors. The trustee will contact my first protector. If she is not contactable, then the second protector will be called, and so on.

1st Protector Cordelia Lee/Cordy
2nd Protector Lim Yeeu Jen/Ujen
3rd Protector Aunt Suui Chin (mom’s sister in UK)

Legal Executives: There are three Rockwills employees co-handling my trust. Namely Alex, Alfin, and Tham.

Transparency
The trustee oversees all financial transactions of this account. I will be receiving monthly account statements from the trustee. Since this is a public trust, should any party with good and valid reason request to review the account statements, my trustee will allow it after getting my consent.

Contributions to the trust fund is not tax deductible.

NOTE: This is strictly my medical fund, separated from my personal finances not counted as healthcare.

Social responsibility! After my demise, the trustee will use the remainder of my trust fund to pay off any outstanding debts related to my healthcare and trust maintenance. If there are extras, the trust shall be maintained to benefit other NF patients in Malaysia. But if for any reason, my wish cannot be fulfilled, then the money shall be donated to other charities.

Trust maintenance costs: Only 2% of the total amount managed annually. In addition, there wiil be other costs such as stamp duty and phone bills related to the trust management, but these should be minimal.

What about the webstore? I will still use my Maybank personal savings account in managing the webstore. This is for reasons of mobility. So do get my personal account number when buying stuffs from me yah.

Let me know if there is anything else that needs to be explained or made known ya?

I feel so frustrated with myself. I can’t drive and I can’t get large carton boxes for Holly. Her hearing is getting worse everyday. The left of mom’s jaw is swollen and painful, so are her legs. I suspect her Thyroid Gland Tumor is acting up. Our family GP is off on Sundays. I told her to go to the hospital. But upon hearing the word, “hospital”, she quit whining and blamed it all on HEAT that she says would eventually subside. So you see, it’s not just toward me that mom plays down physical symptoms. She’s off to half day of work after failing to get her supervisor on the line. On Sunday! With a swollen and painful body! I am recovering from fever myself, and I already felt like collapsing in church. Imagine her pain! Gosh!

How I wish somewhere close to home sells those carton boxes I need. I can understand Holly’s urgency. I was there myself not too long ago. When mom comes home, I wouldn’t have the heart to make her drive in that condition. SIGH.

While preparing for a class presentation on Repressive Adaptive Styles, I bumped into the website of St. Jude Children Research Hospital. Their mission and research involvement reignited my passion in health science. Among their many specialties which concerns me are optic gliomas and brain tumors in general. Then one article after another eventually reminded me of my Jugular Foramen Meningioma.

Meningioma is a common form of brain tumor, whereas ones involving the Jugular Foramen are rare and complicated.

I remember when raising funds for my fourth surgery in 2006, I wanted surgery so badly that I almost went ahead without getting the A.B.I when my funds reached the first hundred thousand. Partially because some called me greedy for wanting to hear while many cope fine being deaf. So I e-mailed my surgery counselor Laurie Arranaga and my surgery was scheduled on the 25th October 2006.

I told the people who were trying their best to help me out, that I decided to go ahead without getting the A,B.I. They said, “No. You will get the A.B.I. We will raise that money for you in time for your surgery�. One man slapped his chest and said, “If there’s not enough, I’ll top it up. Don’t worry�.

A month later, I got another hundred thousand and managed to go for surgery AND get the A,B.I.

Well, thanks to those people, my life is saved.

Today, I often say that getting the A.B.I. was for the best knowing every progress I make now contributes to scientific research. I talked so much about the A.B.I, that I forgot about the underlying purpose of that surgery God allowed me to experience.

My Jugular Foramen Meningioma was not previously indicated in MRI reports. No one knew it was there. In 2003, Mr. Johari Sinegar of GHKL used the Retrosigmoid approach when accessing my brain. Dr. Friedman used Translabyrinthine in 2004. Those two of the three standard approaches to Acoustic Neuroma removal did not and could not have led to the discovery of the Jugular Foramen Meningioma. Not even Middle Fossa.

In 2006, Dr. Friedman accessed my brain using the Transcochlear approach in order to place the Auditory Brainstem Implant. This approach is not a standard procedure for Acoustic Neuroma removal. Which means, if I had went ahead for surgery without getting the A,B,I. Dr. Friedman wouldn’t have used this approach.
But because I did, and Dr. Friedman accessed my brain using transcochlear, did he chance upon the Jugular Foramen Meningioma in the way.

The Jugular Foramen Meningioma is a rare skull base tumor. I was very fortunate because Dr. Friedman himself is a Neurotologist and the Jugular Foramen is within his area of expertise. My tumor engulf the ninth and tenth cranial nerves. Dr. Friedman debulked the tumor, meaning he removed some tissues making it smaller. If I was seen by a regular Neurosurgeon in Malaysia, the surgeon might not have discovered this tumor or know what to do.

This tumor cannot be cured the way we can remove the Acoustic Neuroma in it’s entirety, because the Jugular Foramen Meningioma engulf nerves very important for survival. Mine involves the ninth and tenth cranial nerves. The ninth is the swallowing nerve. If this is damaged, I would not be able to eat using my throat. The tenth is the vagus nerve that mediates the parasympathetic nervous system, controlling all but one organ. If I am not mistaken, severing this nerve would be fatal. This tumor involves high morbidity risks.

Now that Dr. Friedman debulked the tumor, I can swallow better except for starchy food like bread. I need to dip my crackers and muffins in liquid before eating, and I always have a drink with me when I eat. Most of the time, I get full from drinking without eating much solid food. Sometimes, food gets stuck midway until I wash them down with water. After that surgery, Dr, Friedman said I should tell him when I have difficulty swallowing. But in reality, it’s hard to tell when is considered the right time to ring the alarm. Since health deteriorations like this happen so gradually, we adapt and make do with it everyday. In this case, if my swallowing went any worse, it also means I have been drinking more water and eating less. I wouldn’t know until I think hard about it. Have I always been like this? When did I start drinking so much? Gee, I don’t remember!
One thing apparent, is that most people have been finding it difficult to hear me talk. It could have been my inability to hear that I fail to adjust my volume. But when I try to yell, I can’t. So maybe it’s the tumor.

In any case, I’m very grateful for everyone who believed in my determination to obtain the A.B.I. If I had not went ahead with the implantation, we might never discover the Jugular Foramen Meningioma before it causes me severe disability and threaten my life.
My most recent MRI indicated this tumor to have slight changes in positioning, but nothing serious. Why then is my throat weak? Well, that’s the nature of the nervous system. You can only try to prevent further damages, you can’t undo it. Although the tumor has been debulked, my nerves are not so strong anymore. Let’s hope it doesn’t grow further.

When I saw Dr. Friedman last December, he asked whether he could borrow my scans for an upcoming medical conference. “Of course!” I said triumphantly. I’m only grateful to be here.