Happy Birthday to my wife!
Bram gave Laura an amazing birthday present.
Their first cuddle in 3 weeks!
Happy Birthday mummy!
Brothers meet again!
Bram and Max were reunited today for a couple of minutes. The fantastic staff at King’s College Hospital made an exception for Max to visit. They had not seen each other for 3 weeks.
As you can see Bram is still on the paediatric intensive care unit. He is still connected to a ventilator although currently it is switched off and Bram does all the breathing by himself. He is making slow progress. We are still awaiting a decision by the NHS medical board regarding follow on Proton Beam Therapy.
Bram has still a long way to go, but the last week has been a positive one and we keep the fight going to achieve a cure.
Thanks for all the support!
Jeroen, Laura, Max and our big fighter Bram.
Bram working hard to beat this disease!
28th March update
Dear friends,
Bram is still on the paediatric intensive care unit. He is slowly improving. He is still on a ventilator. Bram underwent surgery again last Wednesday. His shunt (internal drain) got blocked and had to be removed. He currently has an external drain to lower the pressure on his brain. This pressure is causing some issues at the moment. The medical team are hopeful to wake Bram up next week and finally be able to take him off the ventilator. We have to wait and see.
Yesterday we also got back the results of the biopsy of his tumour. His tumour turns out to be cancerous. It is called Anaplastic Ependymona. It is stage III cancer, agressive and can spread quickly. During surgery the whole tumour was removed and this gives Bram the best chance of survival. Survival rate for this type is around 50%.
As you can imagine we are deeply shocked and have no words to express our fears. All we can do is hope. The medical team is working for a complete cure.
The medical team has now proposed to us and the NHS for Bram to have Proton Beam Therapy. this is currently unavailable in the UK. because of the cost involved in this (around £100000) the NHS medical board needs to approve this first. If approved it would mean that we take Bram to the US. Either Oklahoma or Jacksonville, Florida. We would be looking at up to 8 weeks of Proton Beam Therapy and a total stay of about 3 months. We expect an answer of the NHS in the next week or 2.
The other option would otherwise be up to 2 years of chemotherapy for Bram.
We are absolutely heartbroken at the moment, but are hopeful that a cure is still possible. Please keep burning your candles, keep on praying and keep on sending your nice messages of support. It gives us hope and a little bit of comfort.
Bram is a fighter and we believe he will beat this horrible disease!
Love,
Jeroen, Laura, Max and Bram
20th March update
Dear friends,
Thank you all for your kind messages of support. The last couple of days have been extremely challenging for all of us.
On Bram’s birthday last Sunday he got transferred from St. George Hospital to King’s College Hospital in the centre of London.
That evening surgery was performed on Bram to relieve pressure on the brain and a permanent shunt was inserted in his head.
This was successful and relieves the symptoms for a couple of days.
Yesterday the medical team performed surgery and successfully removed the whole tumour from Bram’s head. There are no words to describe the relief that this was successful. This surgery and subsequent MRI scan lasted well over 10 hours.
At the moment Bram is at the paediatric intensive care unit. He is doing well. He has opened his eyes, is moving his limbs and clearly recognises us. He suffers from a minor chest infection but that is being treated at the moment.
We don’t have a prognosis yet for Bram’s future. The tumour is being examined in the lab and we are awaiting its results. That will take a couple of days.
We keep on hoping and praying for the best possible outcome. Your messages of support, prayers, thoughts are greatly appreciated and do give us a bit of comfort in these tough times.
Love,
Jeroen, Laura, Max and our wee brave man Bram.
Happy birthday!
Dear friends,
Our son Bram celebrates his first birthday today. What is supposed to be a happy occasion has turned in to our worst nightmare. Yesterday Bram was diagnosed with a brain tumour. We don’t know all the details yet but are obviously very very worried. Bram is getting the best care he can get and will undergo surgery in the next couple of days. We will keep you all updated.
Love, Jeroen, Laura, Max and Bram