Category Archives: Medical updates


By | November 28, 2021

Dear friends, the last couple of weeks have been challenging for us, especially for Bram. 2 weeks ago, Bram came home with a minor cold. When he got a bit of a temperature a few days later we did a COVID-19 test. Bram tested positive. Surprisingly though Bram appeared to manage this disease very well.… Read More »

His heroic first steps

By | March 17, 2021

Wow Bram!! We finally have some video evidence of something we have seen of Bram over the last couple of weeks. He is nearly walking!!! (And he still is unable to stand independently). Despite some doctors and physiotherapists saying that he would never walk, he is just doing that. Years of hard work by us,… Read More »

A long-term survivor

By | February 15, 2021

Dear friends, Today is International Childhood Cancer Day. It also happens to be exactly 5 years to the day we came closest to losing Bram when his line got infected and he ended up with a septic shock and nearly died. Cancer has forever changed Bram’s (and ours) life. He is severely handicapped and will… Read More »

Day #1827

By | October 16, 2020

Dear Bram, Today is day #1827. Today is the day that has been marked in my calendar for years. The 16th of October 2020. It is the day I have been looking forward the most in my entire life. It trumps my wedding day, it trumps your birthday, Max’s birthday and Anoek’s birthday. Today is… Read More »

Shielding, MRI and growth hormones

By | July 19, 2020

Dear friends, Time for a well overdue update on Bram. The last couple of months have been very different. Due to COVID-19 Bram has been advised to shield. So since March 17 he has been at home with us. And to best protect Bram and ourselves we made the decision to shield as a family… Read More »

Look at me (Video)

By | December 8, 2019

Some doctors/therapists said he would never walk…..Look at him now! I am biased, but Bram you are totally incredible. Keep fighting and inspiring us! PS: If Video playback is stuttering download the video


By | November 20, 2019

Dear friends, We are about to start our 5th night with Bram in hospital again. Last week he fell ill and on thursday we took him to our local hospital where he was diagnosed with pneumonia (longontsteking). He has been on antibiotics since and they are very slowly starting to do their job. Bram has… Read More »

MRI, seizure and respiratory infection

By | October 15, 2019

Dear friends, Bram’s amazing story continues….. with the good, bad and downright ugly. It started all late september with a routine sleep study. Bram and I stayed for an overnight sleep in Great Ormond Street Hospital to test Bram’s respiratory system. The results were as expected with no changes needed on his ventilator. The next… Read More »


By | August 2, 2019

Dear friends, With the school year coming to an end last week we were looking forward to 6 weeks of relaxation. It started off well and we celebrated Max’s 7th birthday. He had a nice day and got lots of gifts. On monday we celebrated Bram’s cancer surgery anniversary. 4 years since the second tumor… Read More »