The castle of Sinterklaas

Last Sunday we visited Sinterklaas in his castle in Boxtel. It was a lot of fun for the kids, and even though my legs were shaking after standing for a few hours, it was worth it.
My recovery is slow, I feel less tired, and a bit more energetic, but my hairs are still not growing, and neither is the skin on my hands. I found out yesterday that the fingerprint sensor on my iPad no longer recognizes my thumbprint. The face recognition of my phone luckily still identifies me. This last round of chemo had a big impact on my body, I wonder when my hairs and skin start to regenerate.

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Yesterday Sinterklaas arrived in The Netherlands after a long trip from Spain in his steamboat, the neighborhood association organized a special day for the kids. First, they could watch as Sinterklaas arrived in Dokkum on the big TV. Afterwards, there were all kinds of activities, from a disco to making your own pepernoten, and Sinterklaas and Zwarte Piet hats. Finally, even Sinterklaas arrived, who miraculously crossed the entire country from north to south, after arriving in Dokkum. It was a fun day, which of course cost a lot of energy (luckily I could go home during the disco), but it was worth it.

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Out and about

Every year the Dutch MS research foundation is organising the Dutch MS research days, on which Dutch MS research present their research. Last year, I held an invited presentation there to talk about my own and my family’s MS, as well as my research funded by the research foundation. Last year I met many renowned researchers there. This year I really wanted to meet everybody again, but I still don’t believe that driving myself is safe and using public transportation would be too exhausting. Therefore I thought I would have to skip the meeting. When I told the MS research foundation that I wouldn’t attend because of this, they told me that they could arrange transportation for me if that would help. This offer was amazingly generous, and I gladly made use of it. I decided to attend yesterday’s event, which was not only the second day of the research days but was also a special day that the foundation organized for MS patients. I met many people and attended talks. It was exhausting, but it felt great to be able to be there. Today I am extra tired and have muscle pain in my legs, but it was worth it.

This morning I noticed a few new nose hairs (what is it about my nose hairs). I assume that like last time, this is going to be the start of my cell’s recovery. Last time when I was at the VUmc I asked the hematologists there about this phenomenon (nose hairs to be the first to go and the first to come back), but they never heard of this before…

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Next scan planned for January 12th 2018

My body is still spending a lot of energy to repair the damage of the last round of chemotherapy. Very slowly things seem to improve, but I spend most of the day sitting on the couch too exhausted to even read a simple magazine.
I received a letter from the VU that my next MRI is scheduled for the 12th of January 2018. Thinking about it, it feels more stressful than the previous MRI scans. Now the treatment protocol is over; if everything goes well, there will be no more treatments in the future. Before, the MRI’s didn’t need to be completely clean because another round of chemotherapy was still coming. Now, the planned treatment is completed; there should be no growth visible of the cancers and also there should be no active MS lesions.
I, of course, hope that the treatment worked as good as possible and that no further treatment is necessary. It is very likely that the upcoming MRI scan will not show the opposite, but I sometimes can’t help thinking about the alternative.

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Yesterday I had an appointment at the hematology policlinic of the VUmc to check whether everything was ok. My blood values are recovering. The white blood cells and platelets are still relatively low, but they are slowly but steadily increasing. The hematologist told me that I am doing great given that this chemotherapy round was incredibly tough on my body. She told me that recovery will be a long process. The next MRI scan will be in 8 weeks which will probably be in one of the first weeks of 2018. Until that time she didn’t see a reason for me to return for any other appointments or blood tests.

I am still very weak and tired, but that is to be expected.

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PICC removal

Before I left the hospital they removed the PICC (peripherally inserted central catheter), that was placed on the second day in the Spaarne hospital. This catheter has been in my body since the 4th of August, but it was really nice to have since they could attach the IV to this line, as well as get blood for testing. Having the line saved me from having a lot of needle pricks. I didn’t feel anything when the line was removed. No longer having these dangling lines sticking out of my arm, and not having to wrap my arm in plastic before showering feels liberating.

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Going home

Today I was released from the hospital. We packed up all my stuff, and after having spent 24 days in the hematology department, I can finally go home. For some weird reason, my skin tone is relatively dark as you can see in the picture. With this complexion, it appears as if I spent the last month in Benidorm on the beach instead of locked in a hospital ward. The doctors told me that my skin color would likely return to normal soon. I am still excessively exhausted, so my messages are short, but I am happy to be home again.

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Thomas’ sleepover

Together with the nurses we arranged for Thomas to be able to sleep over. They wheeled in a second bed and Thomas and me spend an evening, night and morning together. We had a great time, it was definitely worth the extra energy it cost.

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Day +16

I haven’t had a fever since I wrote about it on day +14.
The white blood cell counts are what matter for discharge from the hospital. The threshold for all types of white blood cells is 1.0 (1000 cells/mcL), my level has grown to 1.3. Apart from the total amount of white blood cells they also look at the amount of neutrophils. White blood cells can be subdivided into neutrophils, eosinophils, basophils, lymphocytes, and monocytes. The neutrophils are the first responders to attack new bacteria or fungi. That is why their level is important; they pretty much do the work of the antibiotics and anti-fungus medicines.Their level has to be at least 0.5 before discharge. Today my level was 0.46, reason enough for the doctors to believe that later today it will surpass 0.5. They have stopped my antibiotics and anti-fungals.
If all continues to go well, and I do not develop a new fever I can go home tomorrow.

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Day +14

Thomas’s ‘ghost’ on my IV pole accompanies me on all my strolls

This morning I again woke up with fever. Later in the morning I was sent for a thorax X-ray, but nothing was found. The fever also disappeared after a few hours. I am regularly taking paracetamol, which in addition to reducing pain also reduces fever. Perhaps that’s why I have fever in the mornings (they give me the last paracetamol at 22h), and for the rest of the day maybe the fever is suppressed by paracetamol (they give them at 6h, 12h, 17h and 22h). If I again wake up with a fever tomorrow I might be sent for a thorax CT and bronchoscopy, as a lung bacteria or fungus could be the cause). Let’s see what will happen tomorrow, I am also curious about the blood results of tomorrow’s lab.

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