We are flying to Beijing, Tian Tan puhua hospital on th 3rd January. Norman is able to walk now but will still need the wheelchair as the airport is big and we need to walk quite a distance. I heard the Beijing airport is also one of the biggest airport too! Its freezing cold in Beijing and we need at least 4 layers of thick clothing to combat the -10 degree there. I think I might have icesicles dripping down my nose! The air is so dry, we will need to put an icing layer of moisturiser to protect our delicate skin!
Norman 's main treatment protocol is stem cell transplantation. High doses of stem cells will be administered via IV injection for the first 1-2 weeks, the dose gradually reduced later. It seems the stem cell can cross the blood brain barrier and kill the cancer cells directly. I will blog when I have more info in Beijing.
I would like to thank all friends for their well wishes, prayers and support this past weeks. Thank you, thank you and thank you. You all have been great!
In god's glory,
Dorothy
Friday, December 25, 2009
Saturday, December 5, 2009
Photos pre op and removal of clips
Clips removed by Dr Lee
Photos taken on the 24th Nov 2009, on the eve of the 3rd surgery
Monday, November 30, 2009
Physiotherapy and speech therapy
Today is the 6th day after Norman's surgery. He is recovering remarkably well. I started rehabilitation 2 days ago because the earlier rehab is started the faster he will recover. Rehab is critical as it will help his brain to reorganize and recover functions that is lost. Most of the improvement will take place within the first 2 to 3 weeks, so during this time frame I will need total dedication and perseverance on my part as I will be his main physiotherapist cum speech therapist.At the moment, I have arrange a physio to come in 3 times a week for half hour each time($40 per half hour).We have started some tongue exercise. Today Norman was able to count 1 to 50 and recide A to Z with some minor difficulties. It is indeed a mark improvement compared to 2 days ago when he could not talk at all!
For his coordination exercise, I mixed chick peas and black beans together on a tray and get him to pick up the black beans and drop it into a container. He is still very slow but I believe he will improve. He still cannot hold a spoon yet. Sometimes when he tries too hard to tell me something I get him to write it with his left hand.Its difficult and I need all the patience in the world!
Strength and coordination is two different thing altogether. The strength of his right hand is grade4, (grade 5 being the best) but his right leg is rated grade 3. (The tumor is on his left frontal lobe). That means I need to work more on his right leg. I manage to walk him with a walking stick for a few minutes this morning. Hallelujah! He get tire easily, so I cannot push too much. His wounds is still raw and I cannot risk any increase in ICP(intra cranial pressure).
Norman's medication.
Dexametazone 2mg 4x a day. It is an anti inflammatory drug to reduce edema in the brain.
Keppra 250mg 2x a day, Epilim 200mg 2x a day. These are anti fits drugs.
Nootrophil(Piracetam) 2x a day. This drug is credited with improving cognitive functions and memory.
Neuroaid 4 capsules 3x a day. This is a mixture of herbs from China. Extensive clinical trails have been done with it and the results are promising. It improve recovery of speech and other neuro functions by regenerating healthy neurons pathways.
Besides all these medication, I give him a careful selections of natural vitamins and collagen to help boost his immunity and general health.
Thank you all for your uplifting emails, for your comforting word of encouragement and your fervent prayers. I will continue to write when time permits.
God bless,
Dorothy
For his coordination exercise, I mixed chick peas and black beans together on a tray and get him to pick up the black beans and drop it into a container. He is still very slow but I believe he will improve. He still cannot hold a spoon yet. Sometimes when he tries too hard to tell me something I get him to write it with his left hand.Its difficult and I need all the patience in the world!
Strength and coordination is two different thing altogether. The strength of his right hand is grade4, (grade 5 being the best) but his right leg is rated grade 3. (The tumor is on his left frontal lobe). That means I need to work more on his right leg. I manage to walk him with a walking stick for a few minutes this morning. Hallelujah! He get tire easily, so I cannot push too much. His wounds is still raw and I cannot risk any increase in ICP(intra cranial pressure).
Norman's medication.
Dexametazone 2mg 4x a day. It is an anti inflammatory drug to reduce edema in the brain.
Keppra 250mg 2x a day, Epilim 200mg 2x a day. These are anti fits drugs.
Nootrophil(Piracetam) 2x a day. This drug is credited with improving cognitive functions and memory.
Neuroaid 4 capsules 3x a day. This is a mixture of herbs from China. Extensive clinical trails have been done with it and the results are promising. It improve recovery of speech and other neuro functions by regenerating healthy neurons pathways.
Besides all these medication, I give him a careful selections of natural vitamins and collagen to help boost his immunity and general health.
Thank you all for your uplifting emails, for your comforting word of encouragement and your fervent prayers. I will continue to write when time permits.
God bless,
Dorothy
Sunday, November 29, 2009
Home after brain surgery
Dear friends,
We are home. Yes, we made it! We are happy to be home yet we are weary and burden! The surgeon was a tat too adventurous and might have cut too much. But he wanted to remove every one of those damn mutated cells. He too, like us wanted Norman to have a full recovery. Now we are to pay a heavy price for this surgery. Norman is now with right hemiparesis and dysphasia.
Hemiparesis is weakness on one side of the body. The surgical knife have cause deep laceration in the brain and a lot of nerve are cut and damaged. Norman was unable to walk at all yesterday. His right hands and right leg have lost all power. He could could grip your hand but could barely hold a spoon! With 2 person holding him, he could barely drag his right leg forward! That was yesterday. Today he could just about lift his right leg forward to begin his long journey to recovery. With God's grace and mercy, he is going to recover fast and good. Praise God!
Dysphasia is a partial or complete impairment of the ability to communicate. Norman is able to understand what is said but have great difficulties pronouncing words. He was unable to say his own name or any of our children's name! He manage to count one, two, three with great dificulties. He tried so hard to say just one word, it bring tears to my eyes. There is slight improvement today and any improvement is a victory to us! We clap our hands and shout with joy when he manage to take his first step today! Hallelujah!
I want to express my deepest gratitute to all you kind friends who have help ease my pain thru this very painful times. God have indeed blessed me richly with good and sincere friends. Thank you.
In God's glory,
Dorothy
We are home. Yes, we made it! We are happy to be home yet we are weary and burden! The surgeon was a tat too adventurous and might have cut too much. But he wanted to remove every one of those damn mutated cells. He too, like us wanted Norman to have a full recovery. Now we are to pay a heavy price for this surgery. Norman is now with right hemiparesis and dysphasia.
Hemiparesis is weakness on one side of the body. The surgical knife have cause deep laceration in the brain and a lot of nerve are cut and damaged. Norman was unable to walk at all yesterday. His right hands and right leg have lost all power. He could could grip your hand but could barely hold a spoon! With 2 person holding him, he could barely drag his right leg forward! That was yesterday. Today he could just about lift his right leg forward to begin his long journey to recovery. With God's grace and mercy, he is going to recover fast and good. Praise God!
Dysphasia is a partial or complete impairment of the ability to communicate. Norman is able to understand what is said but have great difficulties pronouncing words. He was unable to say his own name or any of our children's name! He manage to count one, two, three with great dificulties. He tried so hard to say just one word, it bring tears to my eyes. There is slight improvement today and any improvement is a victory to us! We clap our hands and shout with joy when he manage to take his first step today! Hallelujah!
I want to express my deepest gratitute to all you kind friends who have help ease my pain thru this very painful times. God have indeed blessed me richly with good and sincere friends. Thank you.
In God's glory,
Dorothy
Monday, November 16, 2009
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
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
Friday, September 11, 2009
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!
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!
Thursday, August 27, 2009
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
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
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