Dear friends,

Last Sunday we were finally able to travel back to the UK after Bram’s unplanned hospital admission in the Netherlands. Our trip home went well.

We have had a busy week getting ready for Christmas. Max went to see Santa, went to see a pantomime and had his Christmas party at nursery. To top it off he ended up being Jozef as a last minute replacement in the nativity scene.
Bram had a good week and his health is back to normal. He went to pick up Max from nursery on Friday as you can see.

Our house is decorated, milk, carrots and cookies are ready for Santa and his reindeers. Max has informed us that Laura and I are to sleep in his bedroom tonight. That way he tells us Santa can land on our roof, and because we have no chimney he will than use the window in our bedroom to enter the house, go down both sets of stairs and leave the gifs under the Christmas tree…… 🎅🏻🎁

I think we have lost that argument with him… looking forward to sleeping on the floor in his room I guess ☹️

With our delayed return to the UK we ran out of time to send out Christmas card this year. So instead of them arriving after Christmas we have decided to make a donation to the brain tumor charity, a charity obviously close to our heart.

We like to wish you all a Merry Christmas!

Love

Jeroen, Laura, Max and Bram

Dear friends,

Our rollercoaster ride continues. We have had two amazing weeks of holidays in The Netherlands. We spent a week at Center Parcs. We went swimming every day, we took the boys horse riding and to the theatre to see “Het Zandkasteel”. Also we celebrated Sinterklaas. Both boys got spoiled with lots of gifts.

Laura got a “nice” gift as well that night….toothache, and ended up with an emergency extraction of her wisdom teeth

Last weekend we organised a small party for some friends and family to meet them all again, for them to see Bram and to raise money for the Ronald McDonald House Camberwell. Last year we stayed there during Bram’s treatment for 105 nights. We like to thank everyone who contributed, a total of €385 was raised! Thank you!

All good things have to come to an end son on Monday we packed up our car, said our goodbyes to my parents who would have to work early on Tuesday morning and we went to bed for our final night before driving back home. But Bram decided different. He suddenly fell really unwell overnight. A very high heart rate of 200 beats per minute and a temperature of over 40 degrees.

We called for an emergency ambulance and were taken to the specialist hospital near to where we stayed, Radboud UMC. Bram was stabilised there and admitted to paediatric intensive care.

It turned out to be a respiratory tracht infection, and after 3 days Bram got discharged from hospital and is back with us, staying with my parents. We are now waiting for Bram to improve and for our travel insurance to agree a date before we can travel back to the UK.

Love,
Jeroen, Laura, Max and Bram

Dear friends,
Bram spend another night in Great Ormond Street Hospital last week. This was a planned admission to have a sleep study done. For the first time in more than a year Bram slept the whole night without needing extra oxygen. It shows to the medical team that Bram’s respiratory system (his breathing) is improving. 

The decision a couple of months ago to use a ventilator at night is starting to pay off. The medical team has authorised us to start to try to get Bram completely off oxygen when awake over the next couple of weeks! This will be a stepped process, so far we have been able to reduce his oxygen requirement by 50%, from 1 liter to 0,5 liters a minute. Hopefully before the year is over Bram will be able to be without oxygen for parts of the day. Exciting times.

Bram is also very busy trying to work out how to stand up. Sitting alone is not enough for our hero. It is a challenge for him but he is so determined as you can see in the photo. Nothing will stop him. 

Love,

Jeroen, Laura, Max and Bram 

Dear friends,

Yesterday, after 2 cancelled appointments Bram finally had his MRI scan. As always done under full general anaesthetic. Bram’s oncologist was present as well and he was able to confirm to us quickly that Bram had delivered another CLEAN SCAN!
We can now celebrate that Bram has been cancer free for more than a year, this is the longest he has been without cancer in his whole life.
As you can see Bram is still making progress. He has recently managed to sit up unaided (with the occasional tumble) and he is now working hard to learn to stand. He has specialist equipment to aid him in this. Bram is so determined not only to beat his cancer but also to learn to sit/stand/crawl. He keeps on trying. We are enormously proud of him, he is our inspiration.
More good news for us is that Max is finally potty trained. Life is kind to us at the moment, and we are now making final preparations for our first family holiday (center parcs) innearly two years.

Love,
Jeroen, Laura, Max and our hero Bram

Dear friends,

We are home again after a 3 day stay in London with Bram. After his cancellation of surgery on Tuesday Bram was scheduled for a MRI scan yesterday. Once again we started the fasting process for him in anticipation of a general anaesthetic. After a long wait the medical team found out an error was made in the booking process and as a result his MRI scan was cancelled.
Bram spent a few days in hospital, had to fast twice and in the end nothing happened. Very frustrating. We are now awaiting new appointments for him, hopefully later this month.

Love,
Jeroen, Laura, Max and Bram

Unfortunately today’s operation did not go ahead as planned! But luckily singing hands were at gosh to cheer us up! Bram is a massive fan of singing hands makaton signing- it was a dream come true for us to see them (although we were missing Tracie) 👌🏻👏🏻🙌🏼👋🏻✊🏻✌🏻️👍🏻❤️ Xxx

Dear friends,

Thank you for all the messages of support for Bram today. Unfortunately after a long delay his surgery was cancelled at the last moment today. Bram requires specialist care after surgery ansd that turned out to be unavailable today.
His surgery will now be rescheduled for next month. Bram is still in London and stays the next two nights in the patient hotel with us. On thursday is his next major appointment. He will undergo his 3-monthly MRI scan to see if the cancer is still away (and check a few more things). Bram will have to have a general aneastetic as always. This MRI scan and the wait for the result is by far the most stressfull thing happening in our lives at the moment. Bram is doing well, is rapidly improving, can finally sit unaided and there is no reason to believe we won’t get a good result.
But we can’t see inside his head and you never know. The next week will be absolutely nervewrecking.
We will keep you updated when we have the result. Can you please send some positive thoughts, light a candle or prey for him.

Love,
Jeroen, Laura, Max and Bram

Getting ready for surgery #16!
Feeding line replacement to a much smaller version. Another step to normality

Dear friends,

Since my last update on Bram a lot has happened again (as always). Bram returned home 2 weeks ago from his stay in Great Ormond Street Hospital. When asleep he is now connected to a ventilator to aid his breathing. Initially this went well and Bram made good progress. We had a few outings to the parks and shops, a relatively normal life.

Last Tuesday Bram started to get breathing difficulties again and Laura and I decided that we did not like it and took him to our local hospital, East Surrey Hospital. Bram has open access to the ward there, so a simple phone call is all that is needed to secure a bed for him. The doctors checked him out and came to the conclusion that he had a bad cold. Antibiotics were prescribed. But Bram is always complicated and he proved that once again. He decided that he did not like his ventilator and started to work against it, thereby constantly setting off alarms and not getting enough oxygen. After a few days of head scratching by a lot of people it was decided to try some different settings on his ventilator. This did the trick, and improved Bram’s breathing. After 5 nights in hospital Bram returned home yesterday. He is still having some problems but they should disappear when he gets fully over his cold.

Bram spend nearly 3 weeks in the last month in hospital and that has taken its toll on all of us. We are very tired from all the stress and travelling and sleepness night looking after him. Hopefully things will quieten down a bit now before we get a real busy September. His next MRI scan is coming up, a nerve wrecking time, surgery to replace his feeding line, Eye tests, x-rays to check Bram’s hips (just a precaution) and Max needs an admission to hospital as well to have a couple of teeth extracted under a general aneastetic. This all in addition to a full time job for me, physiotherapy, occupational therapy, developmental therapy and medical appointments for Bram and speech therapy for both boys. Laura is an extremely busy mother.

As a result of Bram needing a ventilator the NHS has agreed to provide more respite care for us. Every night between 2200-0700 they provide a nurse/carer to look after Bram, so we can get some rest. It is an absolute life line for us. Without it we could not care for Bram (and Max).

Love,
Jeroen, Laura, Max and Bram