Yvonne Foong: Fighting NF

Raising funds for surgeries in public evokes my deepest emotions. While I waited for Ps. Kevin Loo’s sermon to end in City Harvest yesterday, I prayed. I asked God to fill me with love, hope and gratitude. Let God’s hope and love show through me. Let my presence bring love and hope to others. I also invited God into our midst and felt a warm, fuzzy feeling in my heart.

But this also means that I must set my own worries aside. Push them to the deepest reserves of my heart and fill up the additional spaces with love. Expand my heart. Then try to let the love shine sincerely.

For awhile, that worked. I would feel loved and happy to meet my supporters.

But I woke up in the middle of my sleep tonight and I remembered, I remembered everything.

I remembered Pei Lee whose mother, brother and sister have died from surgery complications, from battling NF in Malaysia. I remembered the formidable surgeons I met. I remembered being left in the dark not knowing what to expect from surgery. I remembered the helplessness of patients who sought my advise on where to turn, the apologetic patients who sounded sorry for being born.

I want to assure those around me that I am alright, because I am in the care of good doctors. I want to assure other patients that living with NF is not so bad. There are many who earn postgraduate degrees and work in the field of medicine themselves.

Above all, I want to show surgeons in Malaysia that NF patients can live long and full lives too if only we are treated carefully.

This is a desperate passion of mine, rooted in my unconscious.

Awakened from my sleep, I prayed and remembered something else. God knows, He knows my desperate passion. I am not alone.

Raising funds for surgery is tough because it involves convincing people. Most people want to help, but we still have to convince them that the surgery is important. My heart feels tired sometimes, so I must always be conscious of God’s presence. He is with me, with us. We need to remember Him. He is watching us from above.

I tend to forget that Pei Lee’s case is different. She inherited NF2 from her mother. Besides herself, Pei Lee’s older sister and brother inherited the gene as well. All of them had passed away from surgery complications. Pei Lee is the last surviving NF patient in her family and is very afraid of having surgery locally.

The Neurosurgeon she sees recently suggested to remove a brain tumor of hers. He said it has grown. But Pei Lee does not believe. She said the doctors here just want to operate on them.

In response, I told Pei Lee to ask the surgeon what tumor this is and which nerves it involve. But Pei Lee said he will ask her back, “Would you know?”

It does not matter whether she fully knows what you mean or can understand immediately. It is her right to know. If she doesn’t know, you have no right to operate on her.

Remember Lim Pei Lee? We have been in touch all along. She even visited two weeks ago. She stopped blogging for more than half a year when she started going to Johor to seek out alternative medicine. Pei Lee have just wrote a new blogpost on June 6th.

The reason I haven’t been writing about her for so long had to do with a desire to protect her dignity and self-worth, yet by not writing about her, she doesn’t get helped. No one reads her blog.

Pei Lee’s dad dropped her off at my place this morning before visiting her brother somewhere else. She came so that I could teach her how to blog. Her new but still-empty blog is here peileelim.blogspot.com. She will be writing in Chinese but I don’t read Chinese so do read at your own discretion.

After thinking hard and discussing her case with John, I decided that the best I could do is by teaching her self-advocacy skills. That is, to let her voice up for herself, because I have my own fundraising in the midst while my bachelor’s degree is only half finished. Hence, she could possibly do much more on her own.

Just a little update on her behalf. Pei Lee showed her brain MRI to the neurosurgeon who operated on her in 1995. His name is Prof. Vickey, now working at UMMC. After reviewing her scans, the doctor noted that she did not scan her spine when she did so for the brain. Since it would be precarious to conclude anything without a complete review of all her tumors in the central nervous system, the doctor scheduled a spine MRI for her which will be done in October.

From my experience, MRIs at UMMC costs RM800.00 if not more. Pei Lee might well have difficulties paying it because she already spent RM1000 on her brain MRI at Tung Shin Hospital.

She needs immediate financial assistance, but I felt that we should take this opportunity to encourage her on doing something for herself.

Hence, besides explaining to Pei Lee how to use blogspot, I also told her about my two recent fundraisers at Taylor’s College which included selling t-shirts. Then, Pei lee asked if I would help arrange for her to sell t-shirts too. In response, I gave her the contact number of my t-shirt supplier and suggested to let her dad call them up. Then, I went on to explain the financial aspects of selling t-shirts.

My t-shirt supplier and it’s factory is located at Jalan 222 in Petaling Jaya, which might be a bit far for Pei Lee and her dad who live in Kampung Bukit Kemuning.

So if you happen to know a trustworthy supplier around there, please forward the details to me. Thank you.

As with blogging, my intention is to let Pei Lee spearhead her own t-shirt campaign when she does proceed.

If all goes smoothly, this could even restore her self-esteem.

Pei Lee and her dad dropped by again two days ago after she had an MRI of the brain done at a private hospital. This doctor she found herself ordered an MRI. When she came to my house this time, Pei Lee was confident that she needed surgery. She said the private doctor told her to go back to the surgeon who operated on her in 1995, who is now working at University Malaya Medical Center. She also told me he said she needed surgery that supposedly costs RM50,000.00. She mentioned that tumors at the back of her brain and at the top portion of her spine had grown.

But when I saw the letter of referral this private doctor wrote, I noted that he merely mentioned Pei Lee’s history of Neurofibromatosis, her Acoustic Neuroma surgeries and named a few of her tumors seen in the MRI. That was all. He did not say which tumor he felt needed attention and what surgery must be done. He did not offer his opinion either. He merely requested the UMMC surgeon to see her.

But Pei Lee sounded more serious that that. She so believed in the need for surgery that she said if she waited longer, she would be unable to walk. She came to me dejected and helpless.

Seeing how her legs bend lower when she walks now, weaker than last week, I mailed off her MRIs in a CD by Fedex to Neurosurgeon Dr. Gregory P. Lekovic at House Clinic for his opinion. Pei Lee had also asked me to do this.

My question is:

1.Without comparing the new MRIs with Pei Lee’s old MRIs, how did the private doctor come to the conclusion that her tumors have grown?
2.Without knowing if there are size differences, the doctor could only gauge by the tumors’ location and whether the affected tissues are capable of making her legs weak. In order to do this, he would have to pinpoint the tumor in concern but he could not even be clear about it. Even when one has identified the tumor that needs attention, one SHOULDN’T assume this to mean that the tumors had grown just because there are symptoms. It’s misleading and misinforming the patient.
3.Without knowing for sure what surgery Pei Lee needed, how did the doctor come to the conclusion that it would cost RM50,000.00?
4.He even said the price is not inclusive of I.C.U. charges.

I hope we will be able to do what’s right for her. If she becomes paralyzed, her family will need much more assistance in the long-run. That is definitely a much higher price to pay than what a good surgery can cost.

After an appointment with the Neurosurgeon, Pei Lee and her father visited this afternoon and shared their concerns with me.

Pei Lee lost a lot of weight. The tumor in her left check has grown and distorted her face further. Her upper body lurch further forward. As Pei Lee walks, her wading hands seem like they are struggling to propel her body ahead. Generally, Pei Lee looks like she is having more difficulty keeping upright.

I also noticed how she needs to get up more slowly from the sitting position. And when she is on her feet, Pei Lee needs to pause about two seconds presumably to regain focus.

Pei Lee said her hands feel like there are electric currents in them. She also said all four limbs of hers started getting weaker two months ago.

The doctor she saw this morning scheduled an MRI of the brain to be done next Wednesday.

Pei Lee asks if I could help highlight her plight and raise funds when they decide to have surgery. I need to think of the best way for doing this. Last time, we set up a new personal savings account under her name and blog readers donated directly to the account. It was just a few thousands that she withdrew and used to pay for some minor medical needs at that time. But she will need to collect a lot more for surgery if it is warranted. Possibly between RM50,000 to RM100,000 if surgery is done at local hospitals. I shouldn’t help keep tab of such a huge sum for someone else.

Maybe we could get the press involved and ask the newspaper to set up a fund for her using their own account.

I also have another dilemma. If I want to advocate for Pei Lee and generate publicity for her, I must also understand her situation very well and even find her the best possible course of treatment. Otherwise, I will be asking people to donate for a cause that I, myself, am not confident with. However, I might even have to speak with her doctors because Pei Lee and her dad have difficulty understanding what’s going on. But then, I am also afraid of crossing the boundary and doing too much.

Still, to advocate for someone, I feel I must understand the cause very well before I can speak confidently.

For instance, if you look at my own fundraising campaign info, I have established very strong basis for having surgery at House Clinic � because Dr. Lekovic is one of the few surgeons in the world who learned the Contralateral Transcallosal approach from it’s inventor. When using this technique to remove my Trigone Meningioma, there is far lesser risk of damaging my right field of vision.

There is, of course, a high cost involved, but I am basically vouching for myself.

Should I do all I can to find Pei Lee the best course of treatment? Or should I let her decide for herself and choose the option that is within her means of obtaining? But if it is left up to her choice, will I sill be able to advocate for her? What can I possibly say to convince? Emphasize on the fact that she’s marginalized? That would be unkind.

I hope MMA will not eventually campaign against me for violating their professional relationship with the patient if I have to understand the need for her to have surgery here.

To save us the hassle of getting referred from one doctor to another, we could also send her MRIs to doctors at House Clinic for their evaluation. But if they find that she needs surgery then where should she go?

So many questions!

Pei Lee and Fiona visited me at home on the fifth day of Chinese New Year. Fiona was the only one with a job and paid for lunch.

As mentioned in an earlier post, Fiona and I tried contacting Center for Independent Living in Kuala Lumpur, to provide Pei Lee with vocational training. I read about their work in the Reader’s Digest and thought they might benefit Pei Lee.

Sadly, they were too busy to even entertain us. Elsewhere refused to take up the Deaf.

I took candid shots of Pei Lee while having tea. Sorting through them, I see a lot of bitterness in her, etched by discrimination and fear for a world that sidelined this helpless woman. The last employer insulted Pei Lee so bad, she quit the job although she needed the salary so much.

When we first met, I thought encouraging Pei Lee to live like me would help. I thought she just needs to be industrious, motivated, and get a good push. But learning is really a talent or an ability provided by supportive upbringing. Pei Lee has long passed that stage, We need to help her differently.

I really do not like showing her to people like this to give her the needed assistance but it seems we have no choice. She’s so beaten up after trying and getting rejected. I can talk about quality of healthcare, but Pei Lee finds it hard to survive, let alone choosing good doctors.

I’ve just written to NTV7’s Finding Angels telling them about Pei Lee. Let’s see if they would help. If not, then I’ll write to other shows.

Do you think Pei Lee looks very real wearing my tee in these photographs? This is the kind of image I want Heaty4Hope to project. Genuine people, simple lives. Plain and ordinary.