A massive massive thank you to everyone for their well wishes! A special thanks to brams oma nellie for coming over to help us out in our time of need!! As you can see, bram is doing much better!! He is still in hospital and will be until next week when his antibiotics are finished! We went a trip to great ormond street last week to have his hickman line removed with the surgery being successful! Now we are waiting to go back again later this week for an mlb operation (camera to look down his airway) to see if we can remove his tracheotomy! But the big worry is his mri heres hoping its clean and we can look forward to his 2nd birthday! Xxx

Dear friends,

Here we go again….
Yesterday Bram was rushed to hospital by ambulance. He suddenly fell unwell after his weekly line care. Within minutes he developed a temperature of nearly 40 degrees, his heart rate went to 195, he started shivering and went very blue. No time was wasted and he was transferred to our local hospital where he stabilised. Lots of test were done. Than in the middle of the night the same happened again, but worse. Temperature went up within minutes after antibiotics to 40.3 degrees, heart rate of 212, shivery and very blue again. Again the medical team stabilised Bram and he has been stable since.
It turns out his Hickman line (IV line for his chemotherapy) is infected and when used caused septic shock for Bram. This line won’t be used anymore as not to endanger him any further. We are currently awaiting the plans forward with this. But it will involve surgery within the next couple of days to remove this Hickman line. For that Bram will be transferred to either Great Ormond Street Hospital or King’s College Hospital.
Also next week Bram will undergo investigative surgery to check out his airway and have a MRI scan to check the effectiveness of his cancer treatment. So a tough week ahead for our heroic fighter.

We will keep you updated over the next couple of days.

Love,
Jeroen, Laura, Max and the incredible Bram

Dear friends,

We have had a good start of the year. Bram is continuing to improve as you can see in the photos. Progress might seem slow but his physiotherapist and occupational therapist are extremely pleased with his progress. He has a therapy seat to train his sitting, a bath seat to make bath time easier and tomorrow he has an appointment to have a fit check on a wheelchair. Bram is determined to start crawling. He is often on all fours and building his strength and balance. We are convinced he will learn to crawl again, but this will take time. We are exercising standing up with him as well and we can see that improving as well.

With both our boys we are using Makaton (simple sign language). This makes communication a lot easier. Max still does not talk a lo but he signs all the time. And we can see that Bram is trying to use his hands more and more as well and we think he is showing the first signs of trying to sign as well. Laura will start an official Makaton course this week so she can communicate with the boys in the best possible way. I intend to do the same course when my schedule allows.

Bram’s neurological signs are still improving as well. His breathing is becoming less abnormal, his heart rate is coming down to normal levels. He has lost his chubbiness and his hair has completely grown back.
More importantly his signature smile and chuckle are shown a lot. Bram is a very happy boy.

Our life is slowly becoming normal. In the middle of December I returned to work, and I am pleased to say I completed my training successfully and I am back to flying full time. Laura has our household under full control and it starts to feel like our normal life again. Obviously we are still very busy with Bram’s care and all his appointments, but it feels different. He doesn’t look ill anymore.

Love,
Jeroen, Laura, Max and Bram

Tears of joy!!!

Bram’s MRI scan result is positive! Clean scan! We are over the moon. What a boy.

Thank you all for your support!!!!

Love, Jeroen, Laura, Max and Bram

Dear friends,

Bram has been home for exactly one month. We are glad to say it is going well. It took Bram a couple of days to get used to his new surroundings but he is now completely used to it again. He is developing quickly. His hand eye coordination, his balance, his breathing, it is all improving. And Bram is getting very close to be able to crawl again.

For us it is amazing to be a family again. All sleeping under the same roof, spending time with our boys together. Big brother Max is amazing. He switches all Bram’s machines on, cuddles him, brings him toys and generally looks out for him. He lets us know instantly if something is up with Bram, or if his oxygen gets disconnected. And he is such a happy boy. It is great to see the bond between these boys.

Bram has had his first follow up appointments already, and so far the medical team is very satisfied with Bram. He has had no after effects from radiotherapy. His treatment has been without any problems since the second tumour has been removed back in late July.

Going forward Bram will have an MRI scan on the 1st of December. This scan will tell us if the radiotherapy had any effect. Hopefully it will show a clean picture, indicating that treatment has been successful(for now) otherwise we have a big problem. Can you please pray, send positive thought or light a candle for him on the 1st. It is a make or break day for him and us.

Love,
Jeroen, Laura, Max and our hero Bram

Bram is home! Today we finally took our son back home. After 225 nights in hospital, we are reunited as a family. Laura and I are extremely excited to have him back, but it is nothing compared to the excitement his big brother Max showed today. Our boys are together again.

We will have to get used to our new life, it is hard work but so rewarding. With Bram home we would like to say a massive thank you to everyone involved in Bram’s care. It has been fantastic.

I’ll keep it short today. Time to enjoy home life.

Love,
Jeroen, Laura, Max and Bram
   

 Dear friends,

Dear friends,

Today is a day for celebrations. Bram has finished his cancer treatment. Earlier this morning Bram had his 30th and final round of radiotherapy. The radiotherapy team had a certificate and present waiting for him when he woke up from his anaesthetic.

This afternoon Bram’s nurses threw him a party as well. Balloons, hats, cake, food and again a present from the ward were waiting for him.

Laura and myself are enormously proud of Bram. All he has had to go through over the last couple of months is far more than can be expected of anyone. Bram is a superb fighter and determined to come out on top. We now start the long wait to find if he will achieve a cure. The odds have been against him time after time, but he surprised us every time. That gives us the hope and believe he will win his fight.

Bram will now recover from treatment for a couple of days and early next week the last checkups will be made. At the moment we are expecting to finally take Bram home again in the middle of next week.

Love,
Jeroen, Laura, Max and Bram

Dear friends,

Week 5 of treatment has finished. And it is still going well. Bram is coping really well with the radiation and daily general anaesthetic. Only minor side effects. Bram has an active schedule. And we are able to take him out a couple of times a week for a walk outside. Bram is also getting the occasional visitor. His grandparents visit every now and then and big brother Max comes every weekend.

With only 1 more week of treatment left plans are being made to get Bram home soon after. This weekend we are decorating Bram’s new bedroom. And we can’t leave Max out. So also decorating his bedroom. The first pieces of equipment have arrived in anticipation of getting Bram home. Feeding pump and supplies, saturation monitor, suction machine have all arrived. Next week we expect Bram’s hospital style bed to be delivered and also his oxygen concentrator.

Bram will still need extra care when he gets home and we are currently awaiting a proposal from the NHS for extra nursing care at home. More than likely Bram will have a night nurse a couple of nights a week to help him and to give Laura and myself a bit of rest.

We have our fingers crossed for Bram. With his treatment coming to an end we will start this nervous time in which we will have to wait and see if treatment has been successful. Bram will have regular MRI scans to assess this. Whatever happens in the future we are extremely proud of our heroic fighter. He has pulled through and has shown us the true meaning of courage. If anyone can beat this horrible disease it will be Bram.

Thank you for all your support over the last 7 months.

Love,
Jeroen, Laura, Max and Bram 

Dear friends,Bram has started his third week of radiotherapy. It is going well so far. Hardly any side effects. Just a bit of redness in his neck. And Bram is definitely a lot more tired. He is handling his daily general anaesthetics well. His weekday are very busy. Treatment in the morning, than recovery and sleep and in the afternoon physiotherapy, speech and language therapy and play specialist all there for Bram.

With just under four weeks of treatment left and Bram improving quickly the teams are starting to make their plans to get Bram…..home. This will be some time away still but the topic finally gets discussed. We are actively involved in this and are doing our training, and will get our house ready.

Last weekend we finished our training regarding bram’s tracheostomy. With this finished and Bram finally considered stable the medical team gave us the all clear to take Bram out of hospital. So on saturday we went out for a walk with the four of us. No doctors, no nurses. Just us. An amazing and emotional experience.

On sunday we went out for a family day out with the four of us. The hospital had bought us tickets to take Bram and Max to London Zoo. Fully packed with all Bram’s medical equipment we spend six hours outside hospital. It felt so normal. Finally a family again. It lifted everyone’s spirits. Bram and Max really enjoyed the day out and each others presence. I am sure you can imagine the smile Laura and I had on our face that day.

Bram’s fight will continue, we are feeling hopeful and can finally start to believe that we can take him home soon. Only in months and years to come we will get the answer if Bram achieves a cure. But for now he has made a few important steps.

Love,

Jeroen, Laura, Max and Bram