Our story

We had seen before that Semmy was often quite tired, but that was normal for children, after all. At least that’s what we thought as first-time parents of a child who liked to play a lot.
On 28th May 2006, Semmy had just turned 4, and so was allowed to start primary school. He clearly found whole days at school difficult, as his teacher told us. In the beginning, we thought that it was just a matter of getting used to the new environment, because, after all, being at school was more tiring than being at home or at playschool. But there came a point when we started to become seriously worried. This started Thursday, 6th of July. Semmy came home from school utterly exhausted – but, well, it was the end of a long day at school…
On the Saturday, he and a friend (who was 6 months younger than him) and the two dads went to the Louman & Parqui car museum in Raamsdonkveer. From the moment he woke up in the morning, Semmy was incredibly tired. That entire day, he seemed more tired than the younger friend, and he even fell asleep in the car on the way home. Despite his nap, Grandma and Grandpa thought Semmy seemed exceptionally tired when we had dinner there that evening. For the rest of the weekend, we tried to take it easy as far as possible so that Semmy could rest, but on Sunday evening, we decided to contact our GP after all. We got an appointment for the following Tuesday, 11th of July.

Our GP was suspicious, and immediately contacted a neurologist at the hospital in Hoorn. Despite the usual long waiting lists that ran into several weeks, the neurologist asked us to bring Semmy in for an examination the very next week. This was on Wednesday 19th of July. Semmy very dutifully did everything he was told, and we thought that the tests went reasonably okay, but the neurologist had some bad news: the exercises didn’t all go well, and we should prepare ourselves for the worst. To get a better idea of what was going on, he wanted an MRI scan to be done immediately. This happened the very next day. Fortunately, we could still take Semmy home with us, and because the weather was nice, and despite all of the emotion, we took Semmy to the outdoor swimming pool. His favourite cousin Lisanne came too, and his best friend from playschool, Timothy, was by coincidence also there, so Semmy still had that afternoon to enjoy!

The next morning, Thursday the 20th of July, we were expected at the hospital in Hoorn for admission and the MRI. Of course Semmy found this frightening, but fortunately Mummy could be there with him, and she managed to calm him down. That very same afternoon, we had an appointment with the neurologist. He told us that there was a tumour in the brainstem, and that it was in all probability a Diffuse Pontine Glioma (DPG). But this tumour had an atypical appearance, so he hoped that perhaps it might be a localised tumour. This could be treated by giving targeted radiation therapy. That very day, Semmy was given Dexamethasone (a kind of Prednisone) to get rid of fluids so that some of the pressure in his head could be reduced. That night, Daddy stayed with Semmy in his hospital room. The following morning, we had another appointment with the neurologist, who showed us what the tumour looked like. The hospital in Hoorn could not do much more for us, and so it was arranged that we could go to the VU University Medical Centre (VUmc) in Amsterdam for further testing. At the VUmc, various tests were done, including blood tests and various scans, to find out whether it wasn’t perhaps a virus – and not a tumour. Unfortunately, despite everything, after that weekend we learned that we were facing the very worst possible scenario: a brainstem tumour for which there was no known effective treatment anywhere in the world. The neurologists had already told us that the average life expectancy was 3 to 4 months, and that they could offer us terminal care.

In the mean time, we were constantly trawling the internet in the hope of finding some kind of treatment after all. We contacted various specialists all over the world. Nobody could do anything, or give us even the slightest bit of hope. The only thing that seemed to have any sense was to participate in a phase 2 clinical trial. The only one that was running at that point was a study on the drug Nimotuzumab that was being conducted in the Bonn University Hospital in Germany. Our oncologist and the head of the study in Bonn then had contact to discuss the strategy to be followed with Semmy. Eventually, it was jointly decided that we would stay in Amsterdam and start a series of radiation treatments of 30 days, as soon as possible, instead of the more long-term treatment in Bonn starting on the 14th of August, which would have been harder on Semmy.

Why we made this decision:

  • Of all the other possibilities around the world, none had shown any concrete results yet. We had had contact with various specialists in the United States, Germany, France, Austria and the Netherlands. Everyone gave Semmy the same poor prognosis.
  • The treatment in Bonn would have been a relatively hard and long treatment for a child, i.e. intravenous chemotherapy and for radiation five days a week for three months,and that whilst his life expectancy was just 3 to 4 months. The doctors in Bonn hoped that they would be able to extend this by 2 to 3 months, but even that wasn’t certain. So the possible expected extended life expectancy was about the same as the duration for which we would be taking Semmy out of his familiar environment – and that time would be harder for him.
  • The doctors here in the Netherlands hoped that Semmy would be an exception, because his tumour looked atypical and also because his grandfather died of a brain tumour.

The radiation period with Radio Robbie
Before the radiation treatment could start, firstly, a special mask had to be made for Semmy. After that, he had to wear the mask for a trial run to see if he could lie still and would therefore (hopefully) not need sedation. He had to lie in the radiation room alone with “Radio Robbie”, the character from a little book explaining to children undergoing radiotherapy what was happening.

Semmy could choose if he wanted Mummy to read to him or that his favourite CD be played during the radiotherapy sessions. Naturally he wanted Mummy to read to him.

A CT scan also had to be made which, in combination with the MRI scan, would be used to make the calculations for the angle and dosage of radiation.

From the 14th of August, Semmy received radiotherapy every day from Monday to Friday: 30 times in total. In the weekends he got a break. The last radiotherapy session was on the 22nd of September. Every day, he took his cuddly toys along, and sometimes his CARS toys that had to be there at the foot of his bed. Before we started with the radiation therapy, we quickly arranged that we had a ‘reserve’ of his favourite cuddly toy through a very kind lady who responded directly to our advertisement on Marktplaats (a Dutch website like eBay) – we have her details if you want to contact her. She even had three of this particular toy! We will always be grateful of her for this. After each radiotherapy session, the nice ladies at radiotherapy let Semmy stick a sticker on his “week poster”, and he also received a little bead (not sure what they’re called).

He always ran joyfully to do these things!

We bought a ‘Panini’ collector’s sticker album for CARS. After each session, Semmy was allowed to open and stick in 1 or 2 packets of stickers. He absolutely loved this too. Because we started getting doubles after a while, Semmy was allowed to open more and more packets of stickers, and we contacted Panini to try to get hold of the missing stickers so that Semmy could fill his sticker album before the end of the radiotherapy. Panini responded quickly and gladly to this special request, for which we are very grateful. Fortunately, we saw that Semmy’s condition improved a lot during the radiotherapy. At one point he was even ‘terrorising’ the radiotherapy department! He ran back and forth and played with his toy cars. Unfortunately, not all children improve so dramatically after radiotherapy, but of course it was wonderful for us and for Semmy. It gave us the opportunity to make every day as much of a feast as possible, and we could go out and do fun things as much as possible, like going to the park, or to friends, or to Grandma and Grandpa, or to the Amstel Park or the Amsterdam Forest, or to the Márklin shop to look at model trains (and often to buy some) – or whatever he felt like doing. The period after radiation was a very strange one, and also very difficult. We couldn’t do much besides wait, and make little Semmy’s life as nice as possible.

At the beginning of October, Semmy still went on holiday to Turkey with Mummy, Eric and Julian, which he loved. After that, Semmy went to school again; at first just for half days. He liked this so much that he asked if he could go to school in the afternoons too. At lunchtime and after school, he also wanted to go and play with classmates: one time he would go to their houses to play, the next they would come and play at our house. Anything was allowed, as long as Semmy had fun. When we went home at lunchtime to have a sandwich, his little girlfriend from next door, Anouk, often came and ate with us. That was always great, and they had loads of fun together.

For Semmy, going to school was a huge treat every day. We are extremely glad that he could experience this. And Saint Nicholas (‘Sinterklaas’) also came to school on the 5th of December. Semmy insisted on dressing up like ‘zwarte Piet’, Sinterklaas’s helper. Semmy experienced the whole Sinterklaas period with much enthusiasm. Wherever he saw a Sinterklaas, he was always right there to chat about… presents!

Then things gradually became tenser for us, because a new MRI scan was planned for the 12th of January. Semmy was still doing very well, was in good health and could do a lot. But just the same…

This time too, Semmy behaved very well during the scan. An adult would have had trouble lying so still with so much noise around them in a small tunnel, but Semmy seemed to take it in his stride. And then it was a question of waiting for the result: it was very good. Compared to the scan of July 2006, the tumour was now just a third of its size. The radiotherapy had worked. Because we were going to move to Weesp on the 1st of February, we were already very busy looking for a new school for him where they could deal with an exceptional situation like this. Actually, we didn’t believe that any of the schools in Weesp could do this, certainly not as well and as caringly as Semmy’s school in Zwaag. The farewell party for Semmy was organised for the 31st of January, and what a party it was! Semmy was given so much attention – such a lovely day for him.

From 1 February 2007
Semmy started at his new school full of enthusiasm. Within 5 minutes, he had “friendship” with his new teacher. Unfortunately, it wasn’t to last. Semmy’s Grandmas and Mummy became increasingly worried about him. Semmy seemed to be starting to squint a bit again and to be getting tired more easily. On Friday the 16th of February, Semmy’s school celebrated Carnival, and Semmy went dressed as Spiderman. Grandma Esther picked him up from school, and was immediately concerned when she saw him. During the course of the day, Semmy got more and more tired. In the evening, we phoned Prof. Kaspers, saying we were worried and discussed it with him. He said they would be on stand-by to support us during the weekend. On Saturday morning the 17th of February, Semmy woke up retching and nauseous. We rushed him to the hospital. The CT scan showed that the tumour had grown rapidly since the scan on the 12th of January. It was now bigger than on the 17th of July 2006! In just 4 weeks it had gone from being a third of what it had been to actually being bigger than in the scan six months before. “Fortunately” we had been talking to Prof. Kaspers from about September/October about a possible new treatment. This was the so-called Convection Enhanced Delivery (CED), which meant the insertion of little tubes into the skull to just above the brainstem. This would allow doctors to administer chemotherapy straight to the brainstem. However, it had not been attempted anywhere in the world before, and so it was unknown what kind of chemotherapy drugs, what dosage etc. could be used. To find this out, the VUmc started the study VONK/SEMMY, which we are now supporting through the Semmy Foundation. With every specialist involved, we did our very best to get this method available for treating Semmy. But Semmy’s condition was deteriorating rapidly, and there hadn’t been any results from the research yet. And a shot in the dark that’s not backed up by research is not allowed in the Netherlands. The only thing we could do, was to care for Semmy as best we could, to try to stay as cheerful as possible for him and to keep doing fun things with him. One of these things was a wonderful day that we were given by the Dutch equivalent of the Make a Wish Foundation, when we were guests at the football club Ajax; we went to zoos, and Semmy kept on playing with his friends as if there was nothing wrong. As can be expected with a pontine glioma, however, Semmy’s condition deteriorated rapidly, and his bodily functions stopped working one by one.

Semmy himself always stayed cheerful, and focusing especially on what he could still do. We never heard him complain about the things that he couldn’t do anymore.

Except on the day that he died. On the 21st of June, he said that he didn’t feel well. On the morning of the 22nd, he seemed to suddenly improve, his squint was gone and he could swallow a bit again. Unfortunately, that was just a last brief improvement.

On the 22nd of June 2007 at around half past three in the afternoon, Semmy passed away in our arms.

Semmy is an example to us all!

He is a great little boy, and always will be.