Month: September 2017

Monkey Town

This afternoon we went with the kids to Monkey Town, an indoor playground. We first planned on going to the zoo, but the weather forecast was awful for today so we decided to postpone that and do something indoor instead. It was a lot of fun to see the kids enjoy themselves.

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Tuesdays used to be days on which I was off and was taking care of Thomas and Nils. Most of the year other people were taking care of the kids on Tuesdays because I didn’t have the energy to do it. Adrienne, my sister, and my parents helped out. Today I to took care of the kids myself. We had a nice time, and even though it was exhausting, it felt good.

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Lush nose hair

Thomas’ impression of Gru and Dru from the Despicable me movie.

I haven’t written much on my blog lately. Things are slowly improving, apart from having a nasty cold, my energy is slowly getting better. Things are not yet as they were before the start of the treatment but they surely have improved from when I left the hospital after the stem cell harvest.

Together with a physiotherapist, I am working to improve my fitness. When the next treatment will start next week Thursday my health will inevitably deteriorate, so I am trying to go into the treatment as fit as possible.

Also, in some places, my hair has started growing again. Strangely nose hair seems to be the first to go and the first to grow back. I haven’t been able to come up with a convincing reasoning for this; I don’t think my nose hair is exceptionally lush.

It feels strange to get better at home and then go to the hospital to feel worse again. Hopefully, the treatment will work and it will be the last time.

Last weekend friends took care of the kids, which allowed Adrienne and I to spend time together. After a nice lunch on Sunday we picked up the kids again, and Thomas and I went to see the new despicable me movie. It was fun to watch the movie together.

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We went to “Sprankenhof” a farm where we could pick berries, cabbages, tomatoes, pretty much everything that was in season. It was great fun for the kids and we have some fresh fruits and vegetables.

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Updated chart

I updated the treatment schedule. Hopefully, apart from adding the final dates, this chart will not be altered anymore. Of course, I can’t help but think about the fifth of October when I will be admitted to the VUmc, for the strongest course of chemotherapy, followed by another long period of isolation.
A difference to my stay in the Spaarne hospital is that the VUmc has isolated the whole hematology ward, and because of that, patients can roam around and interact with each other. A downside is that most rooms are shared, and have beds for two to three people.
The fifth of October is three weeks from now, so I am trying not to worry about what is coming too much, and enjoying the days at home.

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Not the Philippines

On Sunday evening we biked to the Engelermeer, a place where lots of people hang out on the beach or have a swim… when it is warm and sunny… Thomas thought that even though it was windy, cloudy and cold, it was a good time for a swim. I guess spending a month in the Philippines somehow must have skewed his view on the Dutch climate.

After about ten minutes in the water, reality, and the shivers, struck. Click the picture for a youtube video.

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All you can eat sushi

When the immune system is compromised, and not working optimally, certain foods need to be avoided. Raw cheese, unprocessed muesli, raw nuts, raw meats and raw fish are amongst the things that should not be consumed, as they most likely contain bacteria or fungi. Sushi from an ‘all you can eat’ restaurant is probably leading the list of things you should not eat when your immune system is suboptimal. Sushi is Thomas’ and Nils’ favorite restaurant food, and they had been asking when we can go out for dinner again. Last week the hematologist told me that with my immune system I could eat everything again, and I need not pay specific attention anymore until my next treatment.

Therefore, yesterday evening we went out for sushi.

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Lymphoma disappearing, MS active

It was a long day yesterday. When I came home, I went to sleep after I kissed the kids good night. Therefore I didn’t take the time to update my website to talk about the visits to the hematologist and neurologist yesterday.

The MRI scan showed a further significant reduction of the lymphoma; they almost disappeared which is excellent. At the same time, however, it also showed five new active small MS lesions. That is a lot, and even though not acutely worrisome, it raises the question again whether some addition should be made to the last part of the treatment. I often asked about this in the past, so I found it disappointing that they had no direct answer to this. The neurologist will discuss this and call me next week.

The hematologist talked about the rest of the treatment. The last part of the treatment will take place at the VUmc, and as it will include the not often used ThioTEPA as a chemo-agent, they will keep me at the VU for the entire trajectory. The length of the hospital stay will roughly be the same as the one in Hoofddorp, so around four weeks. They will start on October 5.

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I wrote before about how I was feeling incredibly tired after the chemo’s given at the Jeroen Bosch ziekenhuis. Little did I know, that things could feel a lot worse. Since I am back I feel exhausted, and I don’t get much done. I hope things will get better soon.

[update 5 Sept.] I notice that some times I even can’t gather the energy to write longer blog posts. Apart from being exhausted I also walk badly and pretty much all of my MS symptoms are worse, probably due to me being so drained from the chemo. Last Friday I had a new MRI scan made, and the outcome will be discussed with me and Adrienne coming Thursday. Only then we will have a better idea what the status is of the lesions and whether or not this exhaustion and worsening of symptoms is due to the after effect of the chemo, or something else. Just like last time I don’t know what to expect, or what to hope for from the results of the scan.

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