History

Journal History

Thursday, May 30, 2002 at 10:14 PM (CDT)

Steven is in the hearts of his schoolmates and the school staffs as the school was making plan to hold a memory service for Steven on May 30, 2002. Martha Gottschling, the principal of Mill Valley school, Donna Cansfield, the Chairperson of local school Trustees (ward 2) and Johanne Messner, the Superintendent of Toronto school board of Education delivered their touchy speeches. A video of Steven's short life was played at the memorial service. In loving memory of Steven, a tree was planted and a bench was installed near the pathway to the school entrance. Ballroons were released by the students at the end of the ceremony. This is a very warm memory service that my family feel very comforting. Thanks to all students and teachers of Mill Valley.

It is worthwile to record the speeches here by Martha Gottschling and followed by Johanne Messner:

A little over a year ago, as the new Principal to Mill Valley I did not know Steven and his family. Steven had been at Mill Valley since J.K. At first I just watched this unassuming little boy in our school who wore his baseball cap all the time.

I would watch his Dad come to pick him up at various times and then later in the day or on other days bring him back to school.

With time Steven’s parents total and complete dedication to their son became so clearly evident.

I saw Steven in spite of having cancer be a happy child. I saw him take pleasure in being at school, take pleasure in living life,
laughing,
playing,
running and
joking.

He was a smart little guy. We all rooted for him.

We had, through our fund-raising, all so very much hoped for a miracle.

We had hoped for a different outcome. So in our sadness but with the joy of having known him, I’d like to share with you what some of Steven’s classmates have to say about him.

His teacher had the task of helping them deal with their loss and sorrow. She created a “memory box” and asked each child to write down something they want to remember about Steven.

These are some of the memories they have:

Preeni
My happiest moments with Steven were when he laughed. He had a funny way of laughing. If almost made me laugh.

Sarah
I remember when Steven was working in the group and we were laughing, joking and singing. I thought about this time because at that time Steven was happy. I think we learned from Steven not to take things for granted.

Sophia
Whenever he was at school he was happy. If only he could have spent a little more time with me and the class. He never gave up until now. He was always nice. He used to sit beside me. We made jokes together.

Danielle
I remember the times Steven played his gameboy with his buddies. Steven was a very strong boy to the end. He had a lot of friends at recess. Steven was kind and liked making friends. Steven was a bright student.

Bryan
I remember when I was invited over to have supper with him. We all had Chinese rice and sushi.
I remember when it was recess and we were playing tag and he was chasing everyone.

Melina
I remember when me and Steven were playing lego. He wasn’t allowed outside that day. He choose me to stay inside with him. After that we played battle ship. He won. I thought he was very good. It was fun.

Ali
One of my favourite times with Steven was when he was funny. For instant when Steven ate a sandwich hole. Another favourite time was in soccer-baseball when Steven’s team either lost or won he never bragged or acted like a sore looser.

Laura
Last year when the whole school did Jump Rope for Steven, he was very happy to see the whole school jumping for hm.

Those were some of the thought s the children had.

I spoke with Gage’s Mom. Gage was his special best friend. She said that she was grateful that her son had a friend as nice as Steven. She will always remember Steven as a boy who had kindness and grace. She told about how Gage and Steven would giggle and laugh and be in their own space together. Steven was a child who could be a special friend.

His teacher in Grade 3, the year that he went through chemo remembers that he was a determined guy.

She said that school was his escape. He was a regular little guy at school.
Every one treated him normally.
Even if he came for a half day it was worth it for him.
School was that important.
He always had a smile and really good sense of humour.

What keeps coming through when you talk to people about Steven is the pleasure Steven showed at being able to come to school. He was nice. He liked to laugh, play, run, he had a great sense of humour. --- The kind of boy we’d all like ours sons to be.

I’d like to close with a quote

“Each life is infinitely precious. We are richer for having been touched by it.”

We are all richer for having been touched by Steven.

***********************************

The Speech by Johanne Messner

On behalf of our Director, David Reid, our trustees, staff and students of the Toronto District School Board, I offer Steven’s family our deepest condolences and sympathy. We will never know the pain they felt on November 3, 2001, when Steven was no longer with them. I know this pain continues every day.

During the time of Steven’s illness, he became the focus of our 300,000 students and the entire Board of Education. Donations to assist Steven started here at Mill Valley and continued to grow from every school in our system. Other students who didn’t even know Steven wanted to help him. This connected us as a large family to try to help Steven.

Thank you, Steven, for providing us with that meaningful opportunity.

It is very hard to lose a student, a friend, a classmate. But to lose a fighter like Steven will continue to be difficult for everyone.

To Steven’s family I, once again, share this poem.

“I’ll lend you for a little time a child of mine”
God said.
“For you to love while he lives
And for you to mourn when he is gone.
It may be six or seven years
Or twenty-two or twenty-three.
But will you, till I call him back,
Take care of him for me?
He’ll bring his charms to gladden you,
And shall his stay be brief.
You’ll have his lovely memories
As solace for your grief.
I cannot promise he will stay
Since all from earth return.
But there are lessons taught down there,
I want this child to learn.
I’ve looked the wide world over
In my search for teachers true.
And from the throngs that crowd life’s lanes,
I have selected you.
Now will you give him all your love
Nor think the labour vain.
Nor hate me when I come to call
To take him back again.
I fancied that I heard them say,
Dear Lord, thy will be done.
For all the joy thy child shall bring,
The risk of grief we’ll run.
We’ll shelter him with tenderness,
We’ll love him while we may.
And for the happiness we’ve known,
We’ll ever grateful stay.
But shall the angels call for him
Much sooner than we planned,
We’ll brave the bitter grief that comes
And try to understand.”

Steven is a young soul who made a mark in the entire school system in such a very short time. We will always remember the love we shared and we will miss Steven, for he has made a difference in our lives.

Although we are lonely and sick at heart, we are blessed to have travelled this short journey with Steven.

We, the teachers, staff, parents and students of the Toronto School Board sincerely mourn and miss him.

I would like to end with a poem I found that I feel, maybe, Steven would say to us if he could.

Miss Me – But Let Me Go

When I come to the end of the road
And the sun has set for me,
I want no rites in a gloom-filled room
Why cry for a soul set free.

Miss me a little – but not too long
And not with your head bowed low.
Remember the love that we once shared,
Miss me – but let me go.

For this is a journey that we all must take
And each must go alone.
It’s all a part of the Master’s plan
A step on the road to home.

When you are lonely and sick at heart,
Go to the friends we know
And bury your sorrows in doing good deeds.
Miss me – but let me go.

***********

Satursday, November 10, 2001 at 10:30 PM (CST)

After one week of intensive planning, we had a lovely and memorable funeral service for Steven at York Cemetery chapel this morning. Yesterday was for visitation. I was very surprised to see so many of my wife previous co-workers (many of them retired like my wife) came to say good bye to Steven. There were also many from Steven's Mill Valley Jr public school. The school board superintendent and the director also came. On Saturday there were many church members and friends showed up to say good bye to Steven for the last time. The speakers to pay tribute to Steven included Steven's three sisters, the school principal Martha Gottschling, school board superintendent Jonanne Messner. Pastor Tom Eng and Pastor Joseph Ken of Chinese Presbyterian Church comforted us with the message from the Bible. They all made very touchy and warm speeches of how Steven touched the hearts of many people and the way he left foot-prints in this world with his short life. We also presented slides of Steven's pictures taken during the happy time. The most touchy part was the 9 minutes home video presentation of Steven from the date he was born to the present. The video was professional edited by Amy's friend Phil Pang. He also volunteered to video tape the whole service and to produce a video document of Steven's life. People laughed and weep during the whole presentation. Steven was buried at the York Cemetery. We released a Pokemon balloon and over 100 balloons of different colours with "We love you Steven" printed. I would like to thank every friends and relatives helped to prepare for the service and who came to celebrate his life.
You can view Steven's video at www.hosannaproductions.com/stevenhui

Wednesday, November 07, 2001 at 06:57 PM (CST)

GOD SAID
God saw you getting tired,
When a cure was not to be.
So he closed His arms around
you and whispered "Come to me"

You didn't deserve what you went through,
so He gave you rest,
God's garden must be beautiful,
He only takes the best.
And when we saw you sleeping
so peaceful and free from pain,
we could not wish you back
to suffer that again.
Author unknown

Hui, Steven Sai-Ho, a courageous boy of 9, after battling cancer for 4.5 years, surrounded by loving family and friends passed away peacefully at home Saturday November 3, 2001. Steven is survived by his devoted and loving parents Jasmine and Branden, and remembered with tenderness by sisters Shirley, Amy and Julia.
Steven was a grade 4 student of Mill Valley Jr. Public School in Etobicoke. He was an enthusiastic Pokemon fan, and expert in Nintendo games. Steven’s strength and bravery in battling cancer touched the hearts of all who knew him. The Hui family wishes to gratefully acknowledge all the friends, relatives and the following people who faithfully and tirelessly supported and prayed for Steven in his enduring struggle:
Dr. Baruchel, Director of Innovative Therapy in Oncology, doctors, nurses and supportive staff of Sick Kids Hospital for their tender loving care of Steven.
Martha Gottschling, Principal, Mill Valley Jr. School all the teachers, supporting staff, parents and students for their devotion and love of Steven in initiating fund raising activities for his treatments.
The Principals, all the staff, parents and students in the Metro Toronto and vicinity area Public Schools for their generosity and efforts in fund raising campaign.
Neighbours, community members and Chinese Presbyterian Church members who generously donated to the Steven Hui Trust Fund.
The mass media that helped publicize the Steven Hui Trust Fund.
Steven and his family will, forever remember your generosity, compassion, and kindness.
The money in the fund now and future raised funds will be used to support children cancer research in particular Neuroblastoma research.
A funeral service for Steven will be held at the chapel of York Cemetery where he will be buried on November 10, 2001 at 11:00AM.

Sunday, November 04, 2001 at 07:24 PM (CST)

In Memory of Steven Hui

You are so close yet you are so far
You are in heaven to be a little star
Nine years is short for us to share
Now you are in His tender care
We shared your laughter, we shared your pain
With all the suffering you never complained
Your bravery touched the hearts of all
The love and support strengthened you more
Now God has called upon you
But one day we will be with you
With sadness we don’t want to part
Knowing you are always in our heart.
From Mom and Dad on November 3, 2001

Steven went to Heaven on November 3, 2001 at 5:15PM. He went peacefully with his loved ones around him. It was my eldest daughter Shirley sitting next to his bed noticed Steven was too quiet at 5:15PM. I rushed to check his heart beat and found nothing. I knew that he had just left us. I kissed him good bye and notified the doctor.
He just went quietly at a time least expected.
Yesterday the nurse told me that his kidney was failing because he did not output any urine. After calling the doctor last night she disconnected his hydration pump. Steven seemed to be quite sedative for the whole night only woke up once. This morning I noticed he was not quite comfortable and moaning a little but still quiet, a big difference compared with the other days. I checked his tummy and it was big. I immediately suspected his catheter to his bladder may be blocked. I pushed the tube in so that the balloon at the end will not block his bladder opening. A gush of urine came out around the tube. I called the nurse to replace the catheter and another 700cc was collected. I was so mad. 2 day nurses and 1 night nurse missed the problem. Everyone including the doctor made assumption without checking.
We cleansed his body, changed all the beddings and his clothes. When all was done, the nurse checked his heart beat and breathing. They were all normal and smooth. He was sedated and relaxed. However, when everyone was taking a break, my wife took a bath, and half hour after the nurse was gone, he left us quietly. We were so sad but thanks God who answered my prayer that he left peacefully without pain.
When Steven was awake, he told his second sister Amy that when he went to heaven, he wanted to be a Pokemon trainer. Amy told him to pray to God and I wish God may fullfil his dream and be a Pokemon trainer angel now.

Friday, November 02, 2001 at 07:01 PM (CST)

I think my wife is stronger than me. She stayed with my son all day long. I will be crazy if I do that. I try to get her to do something else and let my daughters take over. I am lucky we have 3 daughters at home to help out. But I think my wife is in worse shape than I do.
My son's condition is getting worse physically but spiritually stays strong. He has difficulty breathing more often. His urine outputs are getting less. His hands and feet are pale. He cannot even swallow a pills now. However, he never sleeps more than 2 hours at a time. The doctor increased the Ketamine infusion but he is still not sedated. The Antivan (anti-agitation pill) pill can only sedate him for no more than one hour. He is aware if no body is around him. He listens to his favorite TV programs. He likes his sisters to read books to him and to massage his tummy. We all try to take turn to keep him busy. He only asks for me if he has problem breathing or his heart is too fast or in pain. He seems to know I am the problem solver.
The retired school principal of Mill Valley Mrs Wojcik also paid him a visit yesterday and one of the school parent brought a whole dinner to us. Mill Valley is just a wonderful school with wonderful principal, school teachers, parents and students.
Today a friend works for an eye doctor told me to radiate his eye sockets if his eyes are bulging. Her advice came too late. This should be done at least 4 weeks earlier and the advice should have come from Steven oncologist.

Wednesday, October 31, 2001 at 04:05 PM (CST)

Yesterday one of Steven's friend visited him. We had to cover Steven's eyes so that his friend not be scared. Steven still remembered his friends did not return his Pokemon cards.
His school principal and school board superintendent also paid him a visit. They brought him some books for us to read to Steven.
Today the nurse noticed his breathing pattern has changed and the breathing is broken occasionally. She called the palliative doctor and the doctor was very surprised Steven can still make very logical conversation with him in such bad shape. After taking a look of Steven's pictures taken in summer and compared with Steven in front of him now, the doctor was in tear.
Steven is still awake most of day. I do not know where he got all those energy without eating anything for 2 weeks. It seems to me his spirit is still very strong but his body is deteriorating. It is very sad to see him like that and my wife is near the brink of malfunction. I ask my daughters to take turn caring him so that my wife can take on more physical home duties so that she can have some relief. I know I have to keep myself in sane and cool so that at least one in the family is still functional to make decision.
Steven's fever flared up when we stopped giving him Vioxx following the advice of his doctor. His fever caused his agitation and fast heart beat. Then I remembered that Vioxx can keep his fever down. After I resumed his Vioxx, his fever is under control. One less thing to worry about.

Monday, October 29, 2001 at 08:55 PM (CST)

Steven condition remains more or less the same after he came home. He is quite comfortable until last night when he complained about stomach pain again. The night nurse had a hard time getting him to sleep long. After a few hours I decided to give him 2mg of hydromorphone ( a derivative of morphine that could make him agitated). Finally he was quiet.
After checking with parents in the internet Neuroblastoma parent group, many parents shared with me the same experience with their children. That means this is not unusual as I was told by his oncologist when I raised the concerns when I noticed his eyes are bulging. I am very upset as he did not receive focal radiation to his skull to prevent this from happening. Now he had to live with not only paralyze but also blindness. Since his brain and major organs are not seriously infected with the disease, he had already survived longer than what was expected by his oncologist.

Saturday, October 27, 2001 at 10:05 PM (CST)

Last night Steven had a good night sleep and so did I and every members of the family. The night shift nurse was also having a relative light duty night. His sisters took turn to entertain him and still massaging his tummy to make him calm and relax. He was surrounded by members of family and friends. Steven mind is still very clear and alert and most of the time is awake. He needs to be turned once a while. The biggest regret is his blindness. This was caused by the tumor at the eye sockets which not only makes the eyes bulging but also somehow caused his blindness (may be pulling the optical nerve?). Since his brain has no tumor according to his latest scan, this should not be caused by the brain tumor.

Friday, October 26, 2001 at 09:11 PM (CST)

After failing so many times to solve his bowl movement problem, Steven was feeling more and more discomfort. He kept on telling me to do something about his tummy. I decided to do something, either increase his pain medicine to knock him out or double up his laxatives. I decided to try the second option. First of all we took turn massaging his tummy hopefully this will make his bowl moving and made him more comfortable. Then I double up the dosage of his laxatives. Finally after 12 hours we have great result. He started to poo and he poo 7 times with stuff like mud. This is a big relief for Steven and us. His sisters took turn read comic books for him. For the rest of day, he had no more complaints. I am really glad he is really comfortable now. I expect he and I will be able to sleep better tonight.
This morning we asked Sharon Lem, the reporter of Toronto Sun, and also our church member, to send us by e-mail a few pictures taken by Toronto Sun photographer in the summer. I intend to print the pictures for his final day. She went an extra mile to ask the Sun to print the pictures for us. In the afternoon we got 3 big beautiful pictures. I appreciate very much the goodwill and big favour of Sharon Lem and Toronto Sun.

Thursday, October 25, 2001 at 09:27 PM (CDT)

Today the visiting nurse from Home Care Service did an enema to Steven to get the poo out. Instead only very smelly gas came out. However, this gave Steven a good relieve. He did not complained that his belly is too full today.
Steven's Mill Valley school principal Martha and her assistant Taryn (also the trustees of Steven Hui Trust Fund)came to visit Steven. Steven is lucky to have such a compassionate school principal. Even the school lunch room assistant came too. However Steven is not very alert to talk to them.
Late afternoon Steven suddenly went into hallucination due to pain medicine. This happened very often with morphine but after I switched to other pain medicine this is the first time at home. There is medicine to calm himdown but he was too agitated to be fed. This took at least half an hour for him to calm down.
Steven suudenly called for Daddy when my wife was at his side. This is very unusual when my wife is with him. He kept on saying "I want to go". I told him "Son you are home now". But he kept saying that "I want to go". I think he lost his wish to live. I had to assure him that I love him and everybody love him. I also assured him that if he goes to heaven first, I will meet him later just like I left him at school and pick him up later. This is also a big different than the first night home. When I tried to talk to him about his possibilty of going to heaven, he told me to go away. It was finally Paster Tom successfully deliver him this message. We did this as soon as possible because we don't know how soon he may leave us. We all wish him go peacefully without fear.

Wednesday, October 24, 2001 at 10:19 PM (CDT)

Steven was happy to be home this morning.
Steven's stay in the hospital in the last 5 days were nightmare to him and to my family.
The hospital did not even arrange a nurse to stay for the night because of nurse shortage, only nurse visits twice a day. After what happened last night, I decided to try myself. Within minutes, from yellow page I found a nurse from a nurse agency. I related the message to Home Care Service and finally I got a male nurse for the night shift. I am happy I did because at night I noticed his tube to the bladder was out. Without the nurse I would not know how to insert it back to the bladder.
His disease progressed really fast. This afternoon it is horrible to notice that he is blind. Steven is very fond of his Pokemon TV show. However, when I turned on the TV, he wanted me to turn on the light. He said it is too dark. I moved him closed to the TV, he still cannot see. He is very fustrated and upset. I has to lie to him the TV is broken and is dark.
I called his sisters Shirley and Amy at Waterloo and both of them are home with Steven. Shirley's Paster Tim drove her home.
At home he is much relaxed. I did not give him morphine but increase his pain patch to 100 from 50ug. He still receives IV Katamine 1ml per hour and IV fluid. He is pain free. He wants to eat something too
After consultation with Paster Tim and his wife, we decided to call Paster Tom Ing from our church to talk to Steven to make him aware that he might die and go to heaven with Jesus who loves him more than anyone else so that he can die peacefully without scare. We also assured him that we all love him.

Tuesday, October 23, 2001 at 10:48 PM (CDT)

Steven pain level increased somewhat and the doctor started giving him 2mg of morphine through IV together with 1ml/hour Ketamine infusion and 50ug of Fentanyl pain patch. The morphine is supposed to be once an hour but the nurse always delay until he had pain. Until now the nurse also tried to make him poo (by Enema) but failed. Steven started complaining he is too full. With constipation side effect of morphine, pain patch and Ditropan, it is getting harder and harder to get him to poo. They should have to do this the first day when he was admitted.
I noticed something worse happening tonight. He required me to turn him at the bed and he complained that I did not move his legs which I did. When I pinched his feet, he did not complained. I am sure he was paralysed. The tumor finally pressed his spinal cord nerve and his lower part will lose control and feeling. This must happen recently because he was still kicking me the first day he was in the hospital.
We decided to honour Steven's wish to go home as soon as possible. He is very uneasy with the hospital. He may know that he will die and he wants to die at home. Finally the doctor agreed that he should go home tomorrow.
At night Steven had a heavy nose bleeding. He kept on telling me to press his nose instead of waiting for the nurse to come. His mouth had blood too. I was so scared and all of a sudden did not know what to do. Finally it took 2 hours, with 3 nurses , 2 doctors + one platelet transfusion to stop the bleeding.

Monday, October 22, 2001 at 10:31 PM (CDT)

For 2 weeks, his overall condition is getting worse not better. Looking back, we did not manage the side effect of the medications he was taking including morphine, vitamin C properly, in particular nausea, constipation and peeing problem. That makes him physically weaker and weaker without proper nutrition and passing of toxic material by passing urine and his bowl movement. It is also very difficult in clinic setting to check and monitor his conditions with proper testing. It is also very hard on the child to be running from one institution to another. My son knew that we did this secretly at the beginning and he never complained.
When he was checked into hospital and cannot do IV vitamin C treatment, he was very upset. This is the first time in the hospital he kept on saying that he wants to go home. This never happens before even during BMT that was very painful for him. Now he has no strength to walk, cannot even sit up properly and may not have energy to watch TV for long. This is the first time I feel he has no quality of life. He is now receiving 1 mg/hour of IV Ketamine (Analgesic medicine), 20ug of Fentanyl pain patch and Tylenol 375mg every 4-5 hours. That seems to control his pain now. His weight drops from 25kg to 22kg in less than one month. He still has stomach clamp once a while maybe due to the tube to his bladder.
His neurologic functions are still normal. I don't know about his vision as his both eyes are somewhat bulging and he cannot or have no energy to watch his TV for long. His hand and feet sensations are normal. It is very hard to tell how much of his weakness symptoms are from the disease. I think the malnutrition, pain medicine and the disease all play their own parts. His blood count is above 90 (hemogobin) 18 platelet 3 days after transfusion, his LDH actually went up 3000+ to 5000+ from last test.
Even Dr. Baruchel was convinced that Vitamin C did stop the pain for Steven, he did not want to do IV Vitamin C even I will get the Vitamin C from Dr Devgan. It is Sick Kid policy that you cannot use outside medicine that can be understood. Dr. Baruchel cannot do this unless he got the approval of hospital ethic committee.
Today Dr. Baruchel told me he will consult with radiologist and find out if radiation to his skull and spine are beneficial. The pro is this may prolong his life, control his pain for a while. However, the con is the side effect of radiation may be nausea. The end result is still the same. He still may have to go through the same pain later. Also Steven may have to be move back and forth to Margaret Hospital over 10 times. We decided that we will not do radiation.

Sunday, October 21, 2001 at 10:17 PM (CDT)

The CT scan indicated that he has lots of tumora in his skule, spine, hip and legs. He also has a tumor 2cm in one of his kidney, lung and one of the vein that go to his brain. His brain is so far free of tumor. There are no massive tumors in his major organs. However, the vein may eventually be blocked and he may die in his sleep ( thanks God if that is the case) Otherwise he may not die so quickly.
I think this is the time to make the painful decision to stop active treatment such as IV Vitamin C and plan palliative care for Steven. This decision makes my stomach really hurts and so difficult to accept even we know that it is coming one day.
I pray if God needs him more than we do or if Steven be better with Jesus than with us, then I wish God will take good care of my only beloved son and make him comfortable and painless before he leaves us. I also be thankful to God that my eldest daughter graduated with honour Bsc in computer science yesterday and got a good job in software development in Waterloo. I appreciate that this is a blessing at this economic time.

Sunday, October 21, 2001 at 10:17 PM (CDT)

Saturday, October 20, 2001 at 05:06 PM (CDT)

At the emergency, Steven told the doctor that his tummy hurted. The doctor gave him IV Fentayl 20ug but that did not help. Finally they gave him some thing to sedate him and this help a little but he was still in pain once a while. Finally he was moved to a room upstair at noon. Then all of sudden, I calm down a little and bladder clamp flashed in my mind. I immediately gave him Ditropam and his pain subsided in 5 minutes. I convinced the hospital to give him the pill every 4 hours and his pain improved a lot. I have a talk with the pain doctor and decide to give him non-narcotic pain medicine Ketamine ( an analegsic medicine) and a 25ug Fentanyl pain patch. Add Tylenol for transient pain. That seems to work so far. I also insisted on a test to see the condition of his tumor. Finally the doctor agreed to do a CT scan today. I also prefer a MIBG scan but was rejected. My reason is CT scan can see the tumor but cannot tell if the tumor is still alive. If Vitamin C is working the tumor will not shrink so fast. It will be bigger before it is smaller because Vitamin C reacts with cancer cells like chemical reaction causing the tumor more inflamation. Vitamin C when entering cells will convert into peroxide which will be neutralized by catalase enzyme in normal cells. But for cancer cells which are lack of this enzyme, will be oxidized and destroyed. That is how Vitamin C is supposed to work.
Steven was very depressed and keeping saying that he wants to go home. I got the feeling that he knows he will die and does not want to die in the hospital. I will make arrangement for him to go home. The main problem is he still did not poo and he still has periodic tummy pain.
Today is his eldest sister Shirley's graduation day at University of Waterloo. It is supposed to be a happy day for us but I felt so sad that her brother and Mom cannot came and celebrated. After the ceremomy, we came back to the hospital to see Steven again.

Friday, October 19, 2001 at 04:54 PM (CDT)

Steven received another 50g of Vitamin C. Again he felt better but after dinner he vomitted and I just realised that I forgot to give him the ati-nausea pill. At mid-night, he waked up and cried with pain. I massaged him and his pain subsided. My wife thought he had a bad dream. However, next hour, he did the same again. I asked him what was wrong but he did not say anything. I was very fustrated and decided to give him a pain medicine pill for transient pain. But it did not help. I up the pain patch to 100ug. The pain became more frequent. At this point I have to bring him to emergency at Sick Kid hospital at 5:00AM Saturday morning.

Thursday, October 18, 2001 at 04:29 PM (CDT)

This morning Steven was in low grade pain at the back. He did not eat much and still did not poo. I will double the laxative medicine today and see what happen. I gave him a pain medicine and went to the clinic at noon. At the clinic his pain came back 4 hours after the pain medicine. IV vitamin c (50g today) barely hold the pain down. I don't know if it will come back again later. I talked to the clinic doctor today and he agreed that we can do the IV Vitamin C 3 times a week at home and 3 times here after this week.

Wednesday, October 17, 2001 at 05:13 PM (CDT)

Today I have a good new to share. Steven is urinating a lot better this morning. This is a big improvement from last night about the same as before I increased his Fentanyl to 100ug 5 days ago. This is 2 days after Ditropan (thank you Shannon for sharing your experience with me) and lowing the dose to 50ug of Fentanyl. I also checked the side effect of Fantenyl from a pharmacology book. Sure difficult to pee is one of the "not too common" side effect. How can Dr. Baruchel and the pain doctor (Janet said she consulted with) be so ignorant about this possible side effect? I am very surprised Steven is so sensitive to pain medicine. With 50ug of Fantenyl he still has no bowl movement for 6 days even with laxative pill.

Another good news is he no longer nausea and vomits. I have to credit to Zorfan and may be lower Vitamin C dose to 37.5g. I should have get this Zorfan 2 weeks ago. However, Janet said Zorfan is only good for patients who nausea due to chemotherapy. He is on 3 days with Zorfan and he did not vomit at all and never complained about stomach upset. I may try to increase to 50g if nausea is no longer an issue.

Today Steven is also more alert. However, since he did not eat well for a long time, and also he vomitted, he is quite weak now. Worse of all, he does not want to walk. Now he cannot walk properly. I have to massage his legs everday and help this will help.

His spot on his neck and his forehead seems to be getting smaller. I don't know if I should credit to Hydrazine Sulfate or not. His original bumps at the front head and the back still remain the same. If these two bumps get smaller, I will be more hopeful.

Tuesday, October 16, 2001 at 07:02 PM (CDT)

Yesterday when I tried to change his pain patches (he had two 50ug each) I noticed I was almost 6 hours late. I therefore reduced to only one pain patch of 50ug. He is still pain free today. I hope IV Vitamin C keeps the pain away. However, I am not ready to take out the last one yet just in case the pain comes back. Now it is important to keep him pain free unless I see some more positive result of Vitamin C.

If his urinating problem is not due to pain medicine, it is a big coincident then. First of all his problem started right away after 4 morphine pills and one 30mg codeine pill. Secondly, his problem improving gradually after we stopped morphine and suddenly the problem returned 3 days after 100ug of Fantenyl pain patch.

Today Steven received only 37.5g of Vitamin C with Ginzeng. He seems to tolerate better than 50g. At this stage it is more important to keep him comfortable than anything else.

Steven feels and looks better every time after IV Vitamin C treatment. But overall he is not getting better in term of activities and energy level.

Since the doctor gave up on him, they will not do any scan just for imformation only. For example they will not do MRI to confirm that his pee problem is due to NB disease because if it does, they cannot or will not do anything. They just prepare to do pain control. Even then they are not doing a good job. In other word, Steven is just left to die by the hospital. I was not offered any palliative care doctor or any. This is terrible for Sick Kid hospital to treat patient like this. I was not even told Steven is entitled to 8 hours nurse care at home until I complained to Janet today that she will look into it. This afternoon I received a call from Home Service that someone will come to visit us this Friday. This is what I meant by reactive service. If I don't drive them, no care, no service.

Monday, October 15, 2001 at 07:50 PM (CDT)

Steven condition is not getting worse or better this two days. He still laid down all day, did not eat very well, but pain free and slept well. His pain pack was due to be replaced this morning but I forgot. He seems to be OK. I cut down to 75 ug by covering 1/4 of the pack with tape.
His urinating problem continues after improving continuously for a week and now seems to be getting worse after I increased the fantenyl pain pack to 100ug. I don't know if the pain pack gave him the same problem.
He had a blood test today and his hemoglobin is low at 68 and his platelet is 22 which is holding not too bad. His low hemoglobin is one of the reasons he looks tired. He received hemoglobin and platelet transfusions. By the time this finished, it was 7:00PM and we had to rush to the clinic for the IV Vitamin C. Today he received only 25g, half the normal dose. He also received ginzeng too.

Saturday, October 13, 2001 at 03:20 PM (CDT)

Last night he slept all night, no pain. He did not complained of stomach upset this morning. He started eating a little. Today he received 50g of IV Vitamin C and ginzeng again. He felt better but still a little drowsy and lack of energy. This could be due to not eating well, low hemoglobin (low red blood cell), side effect of pain medicine, the effect of too much disease (dying symtom), or dying cancer cells releasing too much toxic or a combination of some of all above.

Friday, October 12, 2001 at 10:50 PM (CDT)

This morning Steven was in very bad shape. He complained his back pain, a bad place to have pain. I have to give him another 50ug fantenyl pain pack. Even after given Zantac and Gravol, he still vomitted in the morning. He ate very little the whole day, a big difference compared with yesterday. We brought him to the clinic at noon and was given 37.5g of IV Vitamin C and ginzeng. He felt a little better after that. The increased pain is a bad sign and I am really thinking of whether to give up soon. Just thinking of this really hurts my stomach.
The blood test report from Thursday at Sick Kid indicated that his liver and kidney functions are normal. His blood electrolyte is also normal. His LDH is high 3800(normal <750)but much lower than the LDH on Tuesday from the clinic 6800 (why so much different?). LDH is the disease index.

Thursday, October 11, 2001 at 04:09 PM (CDT)

Steven ate better last night so far no nausea but every morning he complains his stomach pain. I gave him Gravol and akaline drops and the pain is gone. We saw Dr Baruchel today and he agreed to prescribe Ditropan for his urinating problem. He also agreed to do blood test for electrolyte, his kidney and liver functions. I just did a urine acidity test when receiving IV Vitamin C treatment. It is 7.5, a little akaline. I am very surprised. The blood test today is Hemoglobin 86, a drop of 2 points but his platelet is 33, a rise of 3 points. I am not convinced it is in the rising path but at least it is not dropping. The bad news is his LDH (not from Hospital but the clinic own test) increases from 4000 to 6800 in less than 2 weeks. His other index related to liver and kidney are slightly better.
Today he also receives 50g of Vit-C. After his stomach problem in control he eats a lot better today. He is also in higher spirit. I still worry that the disease may progress too quickly that Vitamin C cannot control it.

Wednesday, October 10, 2001 at 04:03 PM (CDT)

Steven received 25g of Vitamin C and a bag of Chinese ginzeng yesterday. He looks a lot better after the treatment. He started eating in the afternon and at night. He slept very well too. This morning he complained about his stomach pain. I gave him the akaline drops and Gravol and his pain stopped.
I received a phone call from Janet this morning. Janet is the assistant of Dr Baruchel, Steven's oncologist. We have a long talk which never happens before. That is because I complained to the interlink nurse yesterday that my son is not getting the care he deserved. When he was in pain and had very bad side effect of morphine, he was not offered any alternative like fantenyl pain pack until 3 days later. If not because of Vitamin C, most probaly he was dead with morphine. When he was not urinating well, he was not receiving any treatment also. His oncologist blamed all his problems to NB disease and considered he is dying. The nurse did not believe that Steven was treated this way and promised to follow up. Now the oncologist suggested that I bring Steven to see him tomorrow and prescribe him what is needed for his urinating problem.
He is urinating a lot better now. The first half is almost normal, the second half is still stop and go and takes longer than usual.
I ask the nurse to test his urine acidity tomorrow when he will be in the hospital. Sometimes I feel sorry Sick Kid hospital has such a closed minded doctor to be the head of innovative treatment department.
Today Steven is receiving 50g of IV Vitamin C followed by 100cc of Na bicarbonate.

Tuesday, October 09, 2001 at 03:26 PM (CDT)

Steven enjoyed a Thanksgiving long weekend with his sisters coming home from Waterloo. His eldest sister is working as software developer after graduated from Waterloo University recently. His second sister is 2nd year computer engineer from the same university co-op program. His 3rd sister is final year high school. He played games with them. He went to church and we had a hotpot at home on Sunday. The doctor gave him something and his nausea seems to subside but he is still not eating well. He received 50g of Vitamin C again Monday and the doctor said his stomach is too acidic from Vitamin C that may cause his nausea. He gave him sodium bicarbonate by IV and it seems help. His did not vomit the whole day yesterday and today. He ate a little better. Today he went to Sick Kid for a blood test. His Hemoglobin is 88 and his platelet is 30 no transfusion. He still looks tired and not much energy but he did not sleep in date time but looks sleepy. This lack of energy could be due to low Hemoglobin, not eating well, too much toxin from tumor cell death or the side effect of fantenyl pain pack? He drinks reasonably well and he pees quite often too. The only good sign is he did not have any pain. Now I am lookin for these good signs: blood count goes up, his tumors shrink at the head, or he gets more energy and eat better. These are good signs that IV vitamin C is working on him. I am also checking for these bad signs: his pain come back with fantenyl pain pack, he lost any of his neurologic functions. That will means IV vitamin C is not working.

Saturday, October 06, 2001 at 02:17 PM (CDT)

Because the blood test & transfusion yesterday took almost a whole day, we did not go to the clinic for IV Vitamin C treatment. Today Steven received IV Ginzeng and followed by 50g of IV vitamin C, increase of 12.5g. The first 25g took almost an hour at a rate of 0.5g/minute. The next 25g took 2 hours the normal rate. The idea is to raise the Vitamin C higher and then to maintain that level by slower rate. Theoretically blood serum of 400mg/dL is effective for most cancers. At this point we don't know what concentration we reached as there is no such test in Toronto. Therefore we can try to do the best by increase of Vitamin C dose and infusion rate. He also poo a litle also but still not good enough. This is the sixth day he did not poo properly.

Friday, October 05, 2001 at 10:01 PM (CDT)

Today is a bad day for Steven. When he woke up in the morning, he was weak and drowsy. He cannot even sit up. Today we have a appointment for blood test. The test shows that his hemoglobin is quite low (73)and his platelet is low too (17). After blood transfusion, he is alive again and the stomach is not hurting any more.

Thursday, October 04, 2001 at 10:54 PM (CDT)

Steven received another 37.5g of IV Vitamin C. He urinated better but still not normal. He did not poo too. I gave him a boml movement pill but it did not help. He looked better though and walked back and forth to the parking lots. He also eat half pigeon which is his favorite. At night he was making a bad turn. First he complained he cannot sleep. Then he said that his stomach hurt.

Wednesday, October 03, 2001 at 11:30 PM (CDT)

Last midnight Steven had a low grade pain at the leg that had been radiated in early September. Tylenol one took care of the problem until 8:00AM in the morning when I gave him another one. Steven had another blood test in the morning. Both platelet and Hemoglobin remains the same as Oct 1. His blood pressure is normal. Dr. Baruchel checked Steven. He said that the urinating problem could be due to the disease pressing on the nerve controlling the bladder. He said that Steven looked a lot better than he imagined according to Janet from her observation Monday. He did not think the urinating problem is the side effect of morphine even I told him that a few NB children had similar side effect of morphine. I told him Steven received IV Vitamin C to control his pain during few days. I asked him for his blessing. After seeing what Vitamin C did to Steven, he agreed that he will not agree or disagree with IV Vitamin C. He also promised to treat Steven’s Vitamin C side effect if any. In exchange I agreed to a "Do not resuscitate" order in case of emergency. I also agree to a lowest dose "50ug" of Fantenyl pain pack to be placed on his arm.

Since no blood transfusion, Steven rushed to receive his IV Vitamin C, same dose 37.5g, infusion time 3 hours with no problem. His urinating problem is improving. It is still stop & go but the go time is a lot longer and smoother. He looks alert and sleeps normal 9 hours a day but he did not want to walk too much and he always wants to lie down. He drinks well but still not eating well. With the pain pack he is pain free.

Tuesday, October 02, 2001 at 11:00 PM (CDT)

Steven received another 37.5g of IV Vitamin C treatment. He is still pain free. A big tube of blood was drawn from his port to be sent to US for testing. The total infusion time was 4 hours. He still has problem urinating. Since there are children in the NB group with the same problem with morphine, I do not worry too much. He walks quite normal not limping but his legs seem to be weak and he does not like walking. Today Janet called before we went to Vitamin C treatment. She was very surprised when I told her Steven is pain free now. I also told her that Steven had very bad side effect with morphine. That is why I asked a family doctor to give him IV vitamin C which stopped the pain. If Vitamin C is working at least to control pain, I expect Dr Baruchel will not be upset with what I did. Tomorrow I will be back to Sick Kid for blood test and to see Dr. Baruchel. I hope I can convince him that at least Vitamin C is better than morphine.

Monday, October 01, 2001 at 10:24 PM (CDT)

Steven took his morphine at 8:00AM again and went to hospital for blood test. Steven looked drowsy and weak. The blood test showed his hemoglobin drops to 79 and his platelet is 28. His WBC is always normal. His blood chemistry is normal except magnesium which is low at 0.54. His blood pressure drops to 55/99. These are the bad side effect of morphine, Janet – doctor’s assistant gave him 30mg of codeine at mid-day. We went to the clinic for IV Vitamin C at 2:00PM. Steven still looked lousy and in some pain. However, after 2 hours of infusion of Vitamin C and infra-red light lamp on his leg, his pain was gradually gone. Today he received 37.5g of Vitamin C in 5 hours. In the last hour the infusion rate was double and this time, no pain. However, there was another problem showed up, Steven lost some control of urinating. When it started he was dripping and then stop and go. It took him 5 minutes to finish. I wonder this is the side effect of morphine or codeine and how long will this last. Now at 9:30PM, he is still pain free for 9 hours without codeine or morphine. I will give him 2g of oral vitamin C before he goes to sleep.
This protocol is developed by Sir Takemoto from Japan. He is in US and the phone # is 480-778-1618.

Sunday, October 01, 2001 at 10:22 PM (CDT)

Today the clinic closed. Steven went to the Church and in the car he started complaining his bump hurts. But the pain came and gone quickly. After the church , he wanted to go home which is rare. At home his thigh pain came and gone again quickly a few times. I gave him 1g of calcium at dinner time. For the next 4 hours he was pain free. At midnight his pain came back in a less severe but continuous form and I had to give him morphine 5 mg every 4 hours until next morning.

Satursday, September 29, 2001 at 10:13 PM (CDT)

Today the doctor did IV ginseng with only 2g of Vitamin C. Infusion time is 3 hours. I don't know why he changed to ginseng. May be it is part of the protocol? After 1 hour of infusion with no change in infusion rate Steven has the same pain at the neck. We slowed down for 0.5 hour and speed up again but no pain this time. Again is the pain caused by the anti-tumor effect of Vitamin C and ginseng? Or due to sudden unbalanced blood electrolyte? Why after slow down and speed up again the pain did not came back?

Friday, September 28, 2001 at 10:10 PM (CDT)

Steven is still on 25g of Vitamin C today. The infusion time is 4 hours with no pain and no apparent side effect.

Thursday, September 27, 2001 at 10:01 PM (CDT)

Steven is still on 25g of Vitamin C today. Total infusion time is 3 hours but speed up at the last half hour with lots of pain right away at the stomach, the neck or may be the head too. The pain stops right after the IV infusion stopped. I don't know why the pain. Is it because the Vitamin C hurting the tumor? I really worry that if vitamin really works and works hard on the tumor internal bleeding is possible as it had killed one patient before at some other place. Since Steven is low in platelet, to play it safe, I am not too concern that the speed is too slow.

Wednesday, September 26, 2001 at 09:45 PM (CDT)

Finally I found a Toronto medical doctor Dr. Devgan who is treating cancer patients with high dose IV Vitamin C for 25 years. However, his protocol is different than the one by Dr. Riodan whose protocol I am much more familiar. Th basic difference is higher initial dose to start at 25g first week, 37.5g second week and 50g the third week. The infusion rate is much slower at total of 4 hours long rather than 0.5g-1g of vitamin C per minute. Dr Devgan's protocol was developed by Sir Takemoto from Japan. The protocol has a lot more other Vitamins and minerals. Steven is infused with 25g of Vitamin C today, infusion time is 2.5 hours with no pain. The treatment is very costly at about $1000 a day. I also purchased an electromagnetic machine at $7,500 for home use. It is supposed to help shrink tumor. Thanks the Trust Fund that paid for the treatment.

Monday, September 24, 2001 at 08:33 PM (CDT)

Today is the day I expect to go to Ottawa for Steven's high dose IV Vitamin C treatment by an oncologist at Ottawa Children Hospital. I waited and waited for her phone call. I did not hear any and finally in the afternoon, I called a parent who has a close relationship with the doctor there. She told me that The doctor there will not be able to treat Steven because my doctor here did not support her and advised her not to treat Steven saying that this treatment is not ethical. I was so mad. First of all what does Steven lose if there is no more conventional treatment for him. With IV vitamin C there is no side effect and not toxic and was proven in US with better overall effect than chemotherapy. I was also mad because either doctors told me that Steven will not be able to receive the treatment. IV high dose Vitamin C is a long shoot for Steven but this may give him a better quality of life. I will search for a doctor to do this for him. For more info on this treatment go to www.orthomed.com or wwww.canceraction.org.gg/inext.htm for more detail

Tuesday, September 18, 2001 at 10:37 PM (CDT)

Steven went for another blood test. The result is more or less the same as before. I got the news that Ministry of health approved the drug Thalidomide to be prescribed for Steven. The drug is very expensive and no insurance will pay for it. However, I talked to the Trustees of Steven Hui Trust Fund and got their approval to use the fund to pay for the drug. Steven will start with low dose of 50mg per day.

Friday, September 14, 2001 at 10:12 PM (CDT)

Today Steven received his radiation at Princess Margaret Hospital. Everytime he went through this kind of toxic treatment, my heart really hurts. I can see he is not as active as before in summer.
I find one treatment called antineoplaston treatment with minimal side effect in Houston, Texas by Dr. Burzinski. I looked at their web site and seems to be very promising for brain tumor. However, when I talked to one of the parent with a stage III neuroblastom child who went for treatment, she told me it is not effective for her son even his son's disease is not progressing. She also told me she recommended 3 stage IV NB children to them and everyone died. Finally I decided that I.V. mega dose Vitamin C may be his only option besides partial anti-angiogenesis treatment without low dose chemo. If Mega dose Vit-C can get rid of some of the bone marrow disease and his platelet is up to low normal, then he may have a better chance for other clinical trial like CH14.18 monoclonal antibody which will be open by the end of this year. IV mega dose Vit-C may be effective to reduce bone marrow disease like chemo without the toxicity of chemo. However, there are not many trials on children even though there are lots of basic research in test tube and animal model with positive results. However, to get doctor to do this treatment is very difficult and to get an oncologist is even harder. I may have a doctor kind enough to do this for Steven with the help of a parent whose son had the treatment done by the same doctor.

Thursday, September 13, 2001 at 10:00 PM (CDT)

Today is another blood test. Platelet is still low but no transfusion. His leg pain is all gone due to the anti-inflammable effect of Vioxx. I have an interview with the radiologist who told me that even his pain is gone, it may be back anytime. Therefore we decided to do radiation on his both legs 3" below and 3" above his knee caps. We decided not to do anything for the forehead because it is in the bone and should not cause pain. The doctor said that radiation will have some negative effect on his bone end plate and will affect his leg growth somewhat if he will live long enough to see it. This is only palliative care namely pain control. The lesions may or may not gone.

Thursday, September 11, 2001 at 10:25 PM (CDT)

Today is the worst day in my life and most probably the worse day for lots of people in the free world. In the morning when I was working on my computer, my brother-in-law called me to turn on the T.V. that The WTC was attacked by terrorists and burning. I watched the T.V. and saw the second plane flied into the WTC. I cannot believe what I saw. I asked myself is this third world war happening? When the second WTC collapsed, I almost jumped up in disbelief. Then I received the phone call from my doctor that the biopsy indicated that Steven's bone marrow was full of cancer cells. Even this is what to be expected, I was still shocked. The doctor told me that his platelet may not go up because of this. I was totally lost. This seems to be the end of his treatment. The question is should I submit to fate and plan for only palliative care for him. My heart was melting. It was in much pain. I scrambled to my computer again hoping to find something.

Monday, September 10, 2001 at 10:10 PM (CDT)

Another blood test was done. His HgB (RBC) was low at 66. A blood transfusion was ordered. His platelet remains low at 30. Bone marrow aspiration ( just like biopsy) was done. I digged into clinical trials again and noticed that anti-angiogenesis cocktail is different in US. A parent from US sent me a confidential copy of the study from Boston Children Hospital. I e-mailed to my doctor and asked for his opinion. He said he can only give Vioxx or celebrex to Steven because the Thalidomide was banned in Canada and he may not be able to get it. Thalidomide is the drug that make babies born with cripled limbs due to anti-angiogenesis side effect. So Steven was prescribed Vioxx at 25mg a day first. I encouraged the doctor to get the Thalidomide because this drug is the main drug to stop the grow factor for cancer grow by cutting off the blood supply (anti-angiogenesis effect). The other two drugs are low dose chemo Etoposide (VP-16) and Cyclophosphmide which Steven cannot take because of low platelet.

Friday, September 7, 2001 at 10:51 PM (CDT)

Steven went back to Sick Kid for another blood test and to see the bone scan result. The blood result is more or less the same as Monday. My worst worry became reality that the bone scan result did show 2 new lesions, one at the forehead and another under both knee caps. This could be due to the fact that MIBG is good to get rid of cancer cells lump but not good for diffused cancer cells. These diffused cancer cells now start to grow after 2 months without any treatment. If that is the case I worry that the cancer cells in the bone marrow may grow too much that there may be pain in other parts of the bone. The worst scenario could be the stem cells have no room to grow to normal. Then the platelet count could stay low and he will not be qualified for any other clinical trial. In order to find out how much disease in the bone marrow, a bone marrow aspiration was booked for next Monday.

Wednesday, September 5, 2001 at 10:44 PM (CDT)

Today Steven is back to Sick Kid for bone scan.

Tuesday, September 3, 2001 at 10:37 PM (CDT)

Today is Labour day holiday. Steven went to Sick Kid Hospital for blood test. The platelet is still low at 30 but no transfusion is required. WBC is normal 5.0 and RBC 81 is low normal. The doctor also booked a bone scan for Steven for Wednesday.

Satursday, September 1, 2001 at 010:57 PM (CDT)

Today Steven went to Canadian National Exhibition. This was the second time he was there. He enjoyed the ride and the games. However, I noticed that his walk was not normal and he cannot walk for long without me carrying him. He also complainted that he has pain near the knee cap. I really worry that the disease may come back again.

Monday, August 27, 2001 at 05:33 PM (CDT)

Today Steven went back to Sick Kid Hospital for blood check-up. He has to go twice per week since early July after MIBG treatment. Today is the only 2nd check-up in a roll without platelet transfusion. His platelt count stays at around 40 for one whole week since last transfusion (9th) on July 20. That may indicate that his blood count has bottom out. He was also off GCSF yesterday.

Saturday, August 25, 2001 at 05:17 PM (CDT)

Today Steven's cousins & aunts are having a garage sale for Steven Trust Fund. Thanks to our neighbours who donated many good stuffs. Thanks to Scarbourbo newspaper "Mirror" and "Etobicoke Guardian" who published the news of our garage sale. We have a busy and exciting day. The weather is helpful too. Before the end of day, we raised over $2,000. At the end we went to Swiss Schaelet to celebrate both the success of the garage sale and my daughter Julia birthday. Steven enjoyed every minutes of the day.

Monday, August 27, 2001 at 02:58 PM (CDT)

Today is Steven's youngest sister's (Julia) birthday. She's 18 today. Our family celebrated her birthday by going out to our favourite Japanese restaurant to eat.

Steven spend the day yesterday at SegaCity's Playdium. He had fun with the different video games and also went around their go-cart track. His oldest sister, Shirley, treated him to a chocolate ice-cream bar which he got all over his face.

Summer's ending soon though and Steven will be entering Grade 4 at Mill Valley Junior School. He's been reading R.L. Stine's Goosebumps books - he likes sitting at Chapter's Bookstore to look through the new books that come out.

A huge yard sale was held this Saturday. Our entire extended family gathered loads and loads of junk together to sell with all proceeds towards the Steven Hui Trust Fund. We were able to raise approximately $2200. Thanks to everyone who helped out and donated their things - for more information, please visit the fundraising page on Steven's other website: www.geocities.com/sai1992ca/events.html

Friday, August 17, 2001 at 11:56 AM (CDT)

Steven is still mostly confined indoors at home these days since his blood counts are still too low for him to go to places where there are a lot of people.

There has been a lot of fundraising activities held over the summer and I would like to thank everyone who has supported my family through this hard time. We could not have raised so much money in such a short period of time without your help. Currently, there has been a total of $120 000 CAN raised which is getting near our target of $200,000 CAN. It is truly amazing how much we can accomplish when large number of people support with big hearts. Thanks once again for your help and support. God bless.

Please feel free to email my dad at bnhui@hotmail.com if you would like to know more about my brother, Steven.

Sunday, August 12, 2001 at 03:06 PM (CDT)

Yesterday's Garage Sale at Chuck Ma's front yard was very successful. People from the neighbourhood started coming at 6:00AM in the morning. Many church friends helped in the events. Steven and the whole family came at noon and we bought some items too. This morning Chuck told me that over $2,600 was raised for Steven Hui Trust Fund. It is amazing for just selling junks.
Steven did not go to Church today because we don't know how far his poly may drop. Urine test indicated that there are some bacteria. We worry that he may have fever. Thanks God so far he is still fine.

Thursday, August 9, 2001 at 02:33 PM (CDT)

Steven goes back to Sick Kid for routine blood test. GCSF to stimulate his Stem cells to produce more white blood cells was stopped last Thursday. His WBC is dropping and seems bottom out in the last couple of days at 2.4 range(above 4 is normal). His poly keeps dropping to 0.9 ( above 3 is normal)His platelet drops to 43 after Tuesday's transfusion. Since it is still above 20, not transfusion is necessary. The above result is still good meaning that his stem cells may not be wiped out by the MIBG treatmentat at Philadelphia. The MIBG scan done last week indicates the result is mixed. In some area cancer cells disappear and other area the cancer sells may be dying. At least the disease is not progrssive. We have to wait for his platelet to recover so that bone marrow biopsy can be done. I expect this could happen in the next couple of weeks. If everything goes well, he may be back to Philadelphia for second round of MIBG treatment. I hope that could be in September.

Friday, August 10, 2001 at 08:37 PM (CDT)

Hello!

Tomorrow's the big day - the Garage Sale! A garage sale is being held tomorrow to help raise money for the Steven Hui Trust Fund. Since June 1,2001, Steven's Mill Valley public school with henerous support from many public schools of Toronto area, the general public, the Churches, and many community members have raised over $100,000 (July fighure)! That's absolutely amazing - in such a short period of time, that is truly amazing. Thanks to everyone who has helped out and supported Steven and our family in many different way.

Steven has low blood counts these days and it is important that he stay healthy. He has had a few fevers but nothing too serious.

Sunday, August 05, 2001 at 02:12 PM (CDT)

Many donations have been received from our church, Toronto Chinese Presbyterian Church, and it's been tough trying to fit it all in one car! Thanks to everyone who contributed. The garage sale will be taking place next weekend - hopefully it will be a blast.

Steven is making a visit to the hospital today to get a blood transfusion. He developed a fever last night at around 11:30 pm and had to be taken to the hospital at around 1:00 am. He stayed at the hospital for about four hours and then returned home. He slept in this morning and ate his lunch before going back to get his transfusion.

Please keep in touch with us and leave us your messages in the guestbook. Thanks to those who have already done so! :)

- God Bless

Friday, August 03, 2001 at 03:55 PM (CDT)

Hey there!

Steven has been going to the hospital every once in a while now to check up on his blood counts and make sure they don't drop too much. We are still waiting to see if his blood count will recover enough that he can go back to Philadelphia to get another cycle of MIBG - as the webmaster, I'm not too sure what that is!! - If you'd like more information on his treatment, please just email my dad (bnhui@hotmail.com), he can give you more information on that.

The summer's hot in Toronto and Steven has been keeping cool indoors by playing lots of N64. He has also been spending time studying his math and reading. Having missed so many school days last year, he is making up the time throughout the summer. Today, he went mini-golfing - Steven's a pro. Check out a picture of him golfing in the photo album.

- God bless!

Thursday, July 26, 2001 at 08:14 AM (CDT)

Hi Everyone!

Steven is currently doing just fine. He has had a few trips to the hospital this week to get blood transfusions since his blood counts are very low. This is as a result of the treatment he received in Philadelphia. My parents are currently monitoring his counts as this may be an indication of whether or not the treatment is working. His next visit to the hospital is actually occuring at this very moment. Thanks for your prayers and support.

BTW, there are numerous fundraising activities taking place in the next few months. Please check out the link to Steven's other webpage (link is below) to find out more details about how you can help or participate in your own community. Take care and God Bless.

Thursday, July 12, 2001 at 07:01 PM (CDT)

HI!
Steven is doing fine today. He had some experimental treatment done in the States (Philadelphia) and right now he is waiting.

Everyone in Toronto has been fundraising for him! Steven is in the newspapers frequently now and there are many strangers that call our house with words of encouragement and support. Our family is very grateful and thankful for this unexpected support from the community.

To learn more about the fundraising activities that are constantly happening, please visit Steven's other webpage shown below (www.geocities.com/sai1992ca).

Wednesday, June 13, 2001 at 03:36 PM (CDT)

Steven is at the Hospital for Sick Children today doing a bone marrow transplant. He is preparing to go to the States this weekend to get alternate treatment in Philadelphia. If this treatment goes well, Steven will have to go to New York to get experimental treatment. More information will be put on this page very soon - please come back again for a better update.

Thursday, June 07, 2001 at 03:19 PM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----