3rd surgery with 5-ALA

5-aminolevulinic acid

We had a brain scan done on the 3rd Nov and the report shows a enhancing tumor 5cm in size. It was devastatiing for us. No words can describe how we felt at that point of time.
The Dr suggest another surgery, which will be his 3rd. The second surgery was on the 16th Feb this year. This time round, the surgeon will use a new technique using 5-ALA.
Malignant glioma exhibit characteristic infiltrative proliferation and even under a powerful surgical microscope the tumour perimeters are hard to differentiate from healthy tissue. In brain surgery we can’t remove a bit of extra tissue to be on the safe side because that tissue is always functional, A new fluorescence technique that shows up tumour cells extremely clear and enables the surgeon to achieve much higher accuracy with tumour resection is 5-ALA. Well-tolerated 5-ALA labels tumour cells
Brain tumours like glioma are able to accumulate a substance called 5-aminolevulinic acid (5-ALA) and transform it into the strongly fluorescing protoporphyrinIX (PPIX). Three hours before the operation, Norman will drink a solution containing 20 mg of 5-ALAper kilogram bodyweight. The solution tastes rather sour, but is well tolerated and causes practically no side effects, because 5-ALA occurs naturally in the body. The PPIX is made to fluoresce under blue-violet light, enabling Dr Lee to clearly identify and safely remove the otherwise hard to spot tumour perimeters and any tumour residue remaining after resection of necrotic tissue and the solid tumour.
There is the danger of over cutting, so the Dr will wake up Norman half way thru the surgery to test his neuro functions like speech,memory and movement functions. We are assure that they will be no pain.
Dear friends, we need your fervent prayers to uphold us thru these trying times. We have not confirm the surgery date yet. Will be seeing the surgeon today and will update you all then.
May God bless you.
Dorothy

Brain tumors may not always be fatal.

Dear friends, I read this good news about brain cancer and felt uplifted! There is hope!

Brain Cancer May Not Always Be Fatal
September 3, 2009
The recent death of Senator Edward Kennedy made many people more aware of brain cancer, in particular malignant gliomas, the aggressive form of brain cancer that ended Senator Kennedy's life. Malignant gliomas are the most common type of brain cancer. Few patients survive more than a year and a half after diagnosis.
At Duke University, Dr. John Sampson says the poor outcome is partly due to the many different types of cells in brain cancers. "While one cell may be susceptible to chemotherapy and another susceptible to radiation, there may be a third cell that is susceptible to neither of those standard therapies," Dr. Sampson said. Some doctors hold out hope, if not for a cure, for a longer life. VOA reported earlier that Dr. Marcus Bredel at Northwestern University has identified certain genes that may help some patients survive longer, and other genes within the tumor that resist treatment and continue growing. "We were able to predict the survival of glioblastoma (brain cancer) patients in a couple of populations across the United States," he said. Twenty-four-year old P. J. Lukac is one of the researchers. He has glioblastoma, the deadliest form of brain cancer. "When I started in the lab it was a very surreal experience because they talk about uniform fatality, they talk about inevitable recurrences of the cancer, and that kind of just hits you," Lukac said. But he is also hopeful. "I think in my lifetime we will see glioblastoma become a chronic and manageable disease," he added. Surgery is still the preferred option to remove as much of the tumor as possible. But a new treatment involves using fiber-optic laser probes placed inside the brain tumor. With a burning hot laser, doctors can destroy cancerous tissue they may not be able to reach during conventional surgery. Doctors Gene Barnett and Steven Jones use fiber optic lasers at the Cleveland Clinic.
"This [the procedure] allows us to steer the laser in different directions, to treat larger areas of tumor and protect normal brain," Dr. Barnett said.

Norman is holding on bravely. In spite of such adversity, we are trying to lead a normal and peaceful existence. We believe in miracles!

Still fighting

Dear friends,
I have been taking care of Norman for the past 21 months, since Nov 2007 and while part of me is very grateful that he has made it so well thus far,another part of me is screaming why, oh why doesn't it end soon! Since his second surgery in Feb 2009,he has poor control over his emotion. He gets angry over minor things especially with the children and no one can do enough to make him happy. Sometime I feel like pulling out my hair or something like that. Then I step back and try to see things from his side. Norman has always been a very independent person and now he is not able to work or drive. His sleep is always disrupted. His social life is non existent. He complains about being bored and there is nothing to do and he feels like craps most of the time! Sob! I can feel all his frustration and anxiety. As a result, I too don't sleep well, I don't want to exercise and feel like craps too! Well, no one says life is ever easy living with cancer!Let me learn to go through the bad times and enjoy the good times. Let me be thankful even for all these trails and tribulations from God. I am blessed to know that God will never forsake me and Norman. With strength and courage from God, we will overcome. Thank you for all your care and support.

Dorothy

Steroid withdrawal syndrome

On Friday,21st August, we saw a neurosurgeon at Sunway and Norman was diagnosed with Steroid withdrawal syndrome. What is that? Precisely what it mean, his body is suffering because we taper off the dexamethazone a week ago! And what were the syptoms?
On Thursday evening(20th August), he could not speak at all, his right side was weak,his right face was droopy and he was not steady when he walks! He couldn't even swallow well as water and food leaks out from the right corner of his mouth.He had 2 fits on thursday night.It was all so exhausting! On Friday morning we were like zhombies! And all these happens because of the devastating effects of steroid withdrawal!

What are steroids?

Steroids are hormones produced by the adrenal glands that are used to reduce brain swelling. Steroids belong to a class of drugs called corticosteroids. The steroids used to treat brain tumors are not the same as those used by athletes. The most common steroid is Dexamethasone. Norman was given steroid to treat his brain edema.
Usually he will take it for about 2 weeks and I will taper it off very gradually, about 1 mg daily by the third week. Since his second surgery in Februay, he has been on this steroid cycle several times because the MRI scan keeps showing massive edema and now the fits keep coming back. So when will all these steroid madness ends? I dont know. The Drs are trigger happy with the steroid and we are drowning with fear from this withdrawal symptoms not to listen to them. Isn't there any other treatment? I wish I know!
For the time being, Norman's condition have improved after taking the steroid. He still could not talk in proper sentences but at least he can say something! We are praying fervently for a complete and speedy recovery.
May God bless you all.

MRI, fits, brain edema

On 13th August,2009 Norman had MRI of the brain at Sunway medical center. He have been having difficulty with his speech lately but can still manage to carry on a conversation slowly. The scan still shows a tumor about 4cm by 3.5cm with massive edema and lots of necrotic tissue. The Dr was not so worried and send us home with more fits medication.
2 days ago, Norman finds that his speech was not only slow but slurred as well. The symptoms of the disease is progressing- anger, aggression, weakness on one side( he was not able to hold a spoon) and extreme difficulty to say anything! It is all so terrifying. I am trying to keep my hope up but the fears keep creeping in. Again and again my faith have been tested! My wonderful children have been very supportive and we pray constantly for a miracle from God.
At this point, I want to thank all our friends who have upkeep us with your fervent prayers. Knowing you all are there for us have been a great help. Thank you.

Dorothy

Yoka Ha and family

Hi guys and gals,
This pic is taken in Hanoi in Oct, 2008. My 3 boys, daughter-in-law, daughter, Khoon Hock and myself.

Reunion of class73 sjc

To all my dear friends, we have indeed mellowed after 36 years (since we left school in 1973) But we look good,don't we? Here is the proof. Take a look at these gorgeous photos! Lets keep it up!