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Dear friends,

With only a few hours left this year it is time to look back. Bram is continuing his good progress. He is still practicing every day to learn to stand. With the aid of his standing frame or something to hold on to he is now able to stand up by himself as well as able to sit up himself now. We are practicing learning to stand unaided and learning to walk every day and we hope that 2018 will be the year we can celebrate these achievements.

He is less dependant on his ventilator, and has completely lost the supportive oxygen he needed for such a long time.

He had surgery 4 times this year, twice emergency surgery to fix a broken vp shunt and once to change his fixed feeding line to a removable feeding line. And only last week his Botox surgery to hopefully stop him drooling so much. It is probably a bit early to say if the botox has worked, we keep our fingers crossed.

Bram got a completely updated bedroom, with a new big boys (floor)bed! as well as his own chair and standing frame for in the living room. And early in 2018 we will get a stair lift installed in our house to help us save our backs while carrying him upstairs. Also we are currently finalising plans for Bram to start school in September 2018. How exciting!

But by far the most important thing about 2017 were the 2 clean scans he has had. He remains in remission and we can continue dreaming that one day Bram will be considered cured of this horrible disease.

We would like to thank everyone for their ongoing support. It makes Bram’s battle a little bit easier for us! And a big thank you to Bram for always fighting, for never giving up, for inspring us every day and for making us believe you will overcome everything that has been thrown at you. We are so proud of you!

Happy new year! Have a wonderful and healthy 2018!

Jeroen, Laura, Max and Bram

Dear friends,

Time for a well overdue update on our hero. After his shunt problems in October Bram has had a good few months without major problems. In november he underwent another sleep study and the result were very good. So much so that he does not need his ventilator anymore for daytime sleeps and is on a reduced rate at night. Early in 2018 Bram will have another sleep study to see if he can handle a ventilator with even less support. He is definitely heading in the right direction.

Dear friends,

On Sunday evening Bram started to vomit again uncontrollably and yesterday morning Bram continued to be sick and was very sleepy and lethargic. Laura did not like what she saw and took him straight to East Surrey Hospital. While he was there he weakened further and showed disturbing neurological behaviour. Bram was stabilised by the medical team and a CT scan was performed. After liaising with Great Ormond Street Hospital it was confirmed that Bram’s VP Shunt (brain drain) had once again blocked. Together with 2 doctors Bram and I were taken by ambulance with sirens and blue lights on to Great Ormond Street Hospital. As there was not enough space in the ambulance Laura quickly followed by train.

Dear friends,

Bram’s rollercoaster journey took a few more steps over the last couple of days.

Lets’s start with the amazing news. Bram had his MRIscan under full general anaesthetic done on Tuesday and he is still tumour free!!!!! We are over the moon! It will never get easy having to wait for these results. Bram has been cancer-free for two years now!

On to more good news than. On Wednesday Bram had another routine procedure under full general anaesthetic. This time surgeons checked out his airway with a small camera. Bram’s airway is in a good condition with no concerns.

But Bram wouldn’t be Bram if there was another surprise waiting for us, and unfortunately this is not a good one. Bram’s MRI scan showed that his hydrocephalus has returned. The brain fluids in his brain have increased a lot. Surgeons checked out Bram’s VP Shunt (drain in his brain) and concluded quickly it is not working correctly. As a result Bram was admitted to the Paediatric Intensive Care Unit last night. He will undergo surgery this afternoon to try to fix or replace his shunt. He will spent at least a few more days in hospital.

Bram is currently well and does not seem bothered by all of this. I think he has been lucky the MRI scan found his hydrocephalus before Bram started to show symptoms.

Can you send him some good thoughts today?

Love,

Jeroen, Laura, Max and our superhero Bram

Dear friends,

Bram continues his amazing progress. He is now learning to stand up and is able to stand up and hold on to the couch/table and escape from his ballpool. Two weeks ago Bram spend one night in hospital for a planned sleep study. This study focuses on Bram’s breathing and the results were great. He is now safe enough to not need extra oxygen any more. So after 23 months Bram finally lives without extra oxygen and a big trip hazard in our house has gone.
It is another step in Bram’s fight to overcome his disabilities. Keep going son. We are so proud of you!

Love,
Jeroen, Laura, Max and Bram

Bram has never walked in his life……until today that is. With his new walking frame, and a bit of a push from Max he took his first steps. This boy has no limits. Go Bram!

What a day! Bram had his MRI scan today…..and it is good news. Still in remission. What a hero!

Max had a gymnastics day at nursery and received a nice certificate. Well done Max.

We are two very happy and proud parents! 

Go Team Sengers!

And than he stands by himself. So proud!!