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Diary, December 2001

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Saturday, December 1, 2001

One year

It seems that after one of your parents has died, you no longer count the years by your own birthdays, but count them from the day your parent(s) died. Today, it is one year ago that my father died.

Monday, December 3, 2001

Idiopathic Thrombocytopenic Purpura?

Yesterday morning, Andy woke up with some blood on his lips. It looked as if he had bitten on his upper lip. He also had some dark red spots on his arms. In the evening we discovered a very large blue bump (could hardly call it a bruise) on his left arm. This morning, he again had some blood on his lips. Because our own GP was ill himself, Li-Xia took him to a GP replacing him. After he read the short letter I had written, he immediately phoned our paediatrician to make an appointment. Li-Xia phoned me, and at noon I met with them in the hospital. Our paeditrician immediately explained that Andy suffered from low levels of thrombocytes (blood platelets) and he mentioned the possibility of Idiopathic Thrombocytopenic Purpura (ITP). He immediately ordered some blood tests, and we took Andy to the lab. There they had difficulties finding a vein. Some blood started to come out before they finally got it in. (Afterwards it turned into another dark blue spot.)

We waited some time for the results to come back. But before they arrived, our paeditrician thought it was a good idea to keep Andy in the hospital. He also explained to us that he wanted to perform a bone marrow puncture to rule out the possibility of leukemia or some form of bone cancer. He explained that it was unlikely, because Andy did not have a pale face, did not have any fever, and did not appear very ill.

So, we walked the all to familar route to the childrens department and went through the admission procedure. We waited the rest of the afternoon in his room. We did meet with his ward doctor, but she also did not tell us more. Later in the afternoon, we got the results of blood test. All blood counts were normal (Hb was 8.7), except for the thrombocites, which were below 5, whereas 150 to 400 is normal. We then also heard that the bone marrow puncture was scheduled for tomorrow.

In the evening, I immediately dropped a question on the Kabuki Syndrome Network email list asking if anybody was familar with this. I did not mention ITP because I had forgotten the name.

Tuesday, December 4, 2001

Immune Thrombocytopenic Purpura!

Early in the morning, I found two replies to my question on the Kabuki Syndrome email list. Both mentioned ITP. Usually, when ITP occurs with children it is an acute form, which often heals by itself. With adults it is often a chronic form. One of the replies was an acute form, which, with some treatment, was healed in three months. The other reply was from a child that had a chronic form. The incidence is 1 out of 10,000 people. Getting two replies within one day from a group of at most two hunderd people let me to believe that the incidence under children with than Kabuki syndrome is at least a little higher. I printed out the two replies.

When I walked into the childrens department, I met our paediatrician together with the ward doctor. When I handed him the printout, he turned to the ward doctor and with a smile told her: "Yes, we are dealing here with two engineers. The father by now probably knows more about ITP than the two of us together." Although, I doubt whether that was really the case, I was very happy with that statement because it clearly shows that he does consider us as on equal levels. Not all doctors are like this. At first he was a little reluctant to believe that ITP was common with Kabuki children, because he had not found any reference to it in the literature, but this afternoon he came back to Andy's room and pointed out to me that it was mentioned in the medical questionair that we filled in for the Kabuki Syndrome Network. He immediately urged me to update our answers to the questionair.

The puncture

At half past nine we went to the operation room, where the ward doctor, together with our paediatrician performed a bone marrow punction, not on his thigh bone but on his hip bone (from the front). It is a slighlty more tricky way of doing it, but the advantage is that he didn't need a tube inserted in his mouth/troat to keep the air way open while being sustained. It all went fine. (Except that we had to wait a long time afterwards. The nurse who brought us did not feel too well, and reported herself ill.)

Hospital Bridge

In Enschede, there is only one hospital with the name Medisch Spectrum Twente, which was formed by the merge of two other hospitals. Because of this the hospital is at two locations. Some years ago someone calculated that it was cheaper to build a bridge between the two hospitals than to use ambulances to transfer patients between the different departments. (Of course, not all facilities are available at both locations.) The puncture was performed in an operation room in the other location, so we had to take Andy with his bed across the bridge and back. He liked it very much, and watched all the people that took a bike. Yes, at both ends of the bridge there are always a lot of bikes parked that the personel uses. They also have special electrical cars for transporting full size beds across the bridge, and others for transporting the food and internal mail. At each corner there are mirrors, and every some many meters there is a phone, such that the doctors can answer there calls. At some part of the bridge there are pictures of all kinds of famous and less famous bridges. This bridge is possibly the only bridge between two hospitals build for this purpose. On the way back, I took a picture of Andy sitting in the bed.

The results

In the afternoon, Li-Xia met our paediatrician somewhere in the hospital when he walked to the childrens department to tell us the results of the bone marrow puncture. It turned out that all cells were normal. Which means we may now safely conclude that Andy indeed has ITP. He will be given prednison as a treatment to start with. There are some gamaglobulin at hand, but our pediatrician will only use it as a second resort. He said that he does not like blood products because they, although being of high quality nowadays, always contain small amounts of "strange" proteins. I agreed with him.

(reoccurence in November 2003)

To bed

The whole day, Andy was in a good mood, except from being a little lazy. Around seven o'clock he almost fell asleep in his buggy. When I understood that I was going to put him in bed, he started to cry very sadly, as if he knew he had to stay another night. I too got some tears in my eye. I managed to get him in bed, but he did not want to sleep. Around eight I decided to get him out in order to give him something to drink. Appearently, he was a little thirty because he drank 100 ml milk without problems. Then the nurse came saying that he should go to bed. She said that she would put him, so I said goodbye and went home.


Thursday, December 6, 2001

Going home

This afternoon, we were told that Andy could go home. This morning his blood was checked, and the thromocite levels had gone up to 56. Reason enough to send him home as he is responding well to the prednison.

Sunday, December 9, 2001

Andy starts walking

Today, Andy walked from one side of the living room all the way to the kitchen all by himself without holding onto any furniture. It looks like he can walk now. But it still requires a lot of concentration. If he hurries too much or if he get excited, he has to hold onto something or he will drop on the floor. It looks like he still does not mind to move around while sitting on his bottom on the floor, which has been his primary way of moving around for the past year.

We think this achievement might also be the result of the Omega-3 fatty acids that we have been giving him since exactly two months ago. At the moment he have stopped temporarily because it can have some slight effect on thrombocites levels.

(follow-up, Prednison effect?)

Thursday, December 13, 2001

Falling star

Just before I wanted to put my bike in the shed behind our house, I saw a meteorite. This meteorite very likely belongs to the Geminids. The last time I saw a meteorite was on August 12, 2000.


Saturday, December 15, 2001

Snow flakes

Early in the morning there already had been some very thin snow. When we returning from the city by bus, we saw real snow flakes coming from the sky. But it was too warm for the snow to stay on the ground.

Tuesday, December 18, 2001

You know you have a child with special needs when....

I received this on our lovely KSN_L email list. I could add the following myself: Another one by Kim McCoombes from Austria: Which made me think of the next one:

Thursday, December 20, 2001

Kay Hammond: Looking for a husband

Kay Hammond is a 24 year old internet entrepreneur, looking for a husband. She decide to auction herself on eBay, but she was removed. Then she tried it on QLX, where she wrote:

Candidates must be male, a British citizen living in the UK, aged 24-35, and meet basic health requirements.

Why am I auctioning my hand in marriage?

Marriage is the one ambition I have yet to achieve. So often I have commented to my friends, family and colleagues that I never have the time to meet any men. I have been working on my business,, ever since I was 17. I work a twelve hour day, seven days a week, so I've been pretty busy over the last 6 years! I thought that by creating an online auction I would be able to reach as many men as possible and hopefully prove that the Internet is not full of cyber-geeks, there are normal people out there, and I'm looking for one as a husband!

Vital statistics

DOB2nd April 1977
Measurements34, 28, 34
Height5' 4"
HobbiesWork! Looking after my dog, Jack, and singing
InspirationsMy parents, Richard Branson, Bill Gates, my old school teachers and headteacher

Really, I find this so silly, that I felt I had to include it here.

(The last bid was 1000000000 Britsh Pounds, which hardly can be considered a serious bid.

Friday, December 21, 2001

Night snow

Last night there was a thin layer of snow outside. This morning, it was raining, and all the snow had disappeared. It rained the whole day with some strong wind. Not a good day for biking, but I resisted the temptation to go to my office by car.

The oil connection

Again there are indications that the United States of America is more interested in protecting its oil resources abroad then to do justice. Today, both CNN and ABCNEWS announced that the original translation of the Osama bin Laden videotape misses the fact that bin Laden identifies nine of the hijackers. Also left out of the translation, they said, were the names of three Saudi clerics who publicly backed the attacks, according to the man speaking with bin Laden on the tape. At least one of those three Saudi clerics was possibly a government official.

Before the tape was released by the United States government on December 13, administration officials spoke at length about the extensive effort to achieve a full and accurate transcript. It almost looks like they needed time to determine which statement to leave out that could be embarrassing to the government of Saudi Arabia, a very important U.S. ally.

The USA government also does have good reasons to do away with the Afghan Taliban government, because they have been frustrating an agreement to build an oil pipe-line through Afghanistan to transport oil from the states North of the country to the ocean. It is likely that in the coming years the USA will be able to make some profitable deal with the new government of Afghanistan and the other countries for the establishment of the oil pipe-line.

(previous and next)

Saturday, December 22, 2001


This morning there was some snow on the car. When we drove into the city it started to snow stronger, and within a short time the roads were covered with snow. Because of this the roads became a little slippery. But it was still far too warm, and less than an hour later almost all the snow was gone.

In the South of Germany a lot of people had to stay the night in their car on the highway because a combination of snow and wind had caused snow dunes blocking the highways at several places. For some reason it seems we never get any of this kind of snow in the Netherlands.

Today, we also got news from our family in Urumqi that for more than ten days the temperature did not get higher than 28 degrees Celsius below zero.

Monday, December 24, 2001

First real snow

There was some real snow this morning when I looked out of the window. In the afternoon the rain washed most of the snow away.

Evening service

At nine o'clock the evening service started. I arrived around twenty before nine, only to discover that the building was almost full. My foremost reason to go, was to perform my duty as a translator. For many years, I translate the services from Dutch into English. By now it almost has become a second nature to translate from Dutch to English, just like walking and talking to most of us. I some times find myself dreaming away while I am translating. There was indeed someone needing translation, so I did my job.

The whole service was done by the young people of the church. They led the service, played the music, lead the singing, performed the drama, and controlled the sound, lightning and the audiovisual presentation. They made a great show of it. I heard one girl, ask someone else: "Does it go like this every Sunday?" The answer is no, but it is always a feast. But beside it being a great show, it also had a confronting message. The theme of the service was Jesus, a refugee, and the collection was for an aid organisation. The preaching also was sharp and challeging, showing, how Jesus Christ, came to earth, lived His life, and was crucified.

During a solo of a girl singing a song (which she wrote by herself), they showed some images about refugee children. There was one image of a little boy looking very sad with tears in his eyes. This immediately made me think of Andy crying in the hospital earlier this month. Again, I was overwelmed by the love that I have for Andy. I never dreamed I could love someone so much as I love him. Immediately, I also realized that this love that I felt for him, was just a glimpse of the love that God has for us. This is truely one of the greatest blessings of having children: to understand more of the love of God. This realization gave me a feeling of getting in touch with reality again. It seems that through everything that happend in the last years, I have forgotten what life is all about. This made this service into a very special night.

Christmasday, December 25, 2001


We spend the day with my mother. The highlight of the day was not the great Christmas dinner that my mother prepared but that we together walked to the graveyard were the ashes of my father have been buried. In the past, I could never understand why people would like to want to visit the grave of their beloved ones over and over again. Now it already seems to have become a tradition. Walking over to the grave has become like a ritual of remembrence. Not that we feel very sad about it (my mother is smiling on one of the pictures that I took), but it is like we as a family are coming together, acknowledging that although my father died last year, in our hearts he is still a member of our family.

Thursday, December 27, 2001

Some snow again

Yesterday eveing, it started snowing again. On the eight o'clock news we heard that the snow had caused quite a lot of troubled during the day in the rest of the country. It seems that it is snowing everywhere, except around here. During the day the snow vanished again when it started to rain, just like a few days ago. It seems this scenario is going to repeat itself around the weekend.

The Lord of the Rings

It is a long time ago, I went to see a movie. (The last movie I saw was Shadowlands, if I am not mistaken, which was in the summer of 1994.) This afternoon, I went to see The Lord of the Rings: The Fellowship of the Ring. (Actually, the two movies are related: Shadowlands was about C.S. Lewis, a personal friend of J.R.R. Tolkien the author of The Lord of the Rings.) I did not get the impression that most of the audience had read the book. As far as my memory served, it looked like a quite accurate filming of the book. But, I might start to read the book again (for the third time), just to verify it. I must admit that I did find it a rather violent filming of the book. Was it really such a violent book, I asked myself several times. The movie also ended quite strange for those who did not know the book, and did not realize that there are two more movies to follow.

Another minor detail: I was treated with the trailer of Star Wars: Episode II. I was not very impressed, also because it revealed too much.

(buying the video, seeing part two and three)

Sunday, December 30, 2001

Thick layer of snow

When we woke up there was a thick layer of snow, and although temperatures rose above zero, most of the snow stayed during the day. On some places on the car it was more than 10 cm (4 inches) thick. In the afternoon, Annabel made three little snowman in the back garden. I took a picture from some snow on a plant in the front garden.

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