Dear friends,

Bram has had a good week. After his emergency surgery last week he has made good progress. His external drain is working well and the plan is to have more surgery on monday to install an internal VP shunt(drain) again. This will be his 3rd, so hopefully third time lucky.

The first couple of days after surgery Bram was quite upset and grumpy but the last couple of days we have seen the real Bram again. Smiling a lot, he is able to sit and play in his seat again. Highlight of his day is playing with his stacking cups.

If he is not sleeping or playing Bram loves to watch Zandkasteel (dutch tweenies) on his iPad. But even better for him is to see his brother Max on skype every couple of days. He almost jumps off our laps when he sees max on the screen. The brotherly love is still there.

As mentioned before another round of surgery on monday, followed by another round on the next monday. If these surgeries go well, no complications arise and Bram is well behaved, he will be ready to be transferred to Great Ormond Street Hospital to start his chemo treatment.

We do feel a lot more positive and upbeat than last week. Bram showed us how strong he is, and we follow his lead. This boy will beat his disease.
Thank you all for your support, we read every message and it gave us strength in the difficult time we have had lately.

Love,
Jeroen, Laura, Max and Bram

Dear friends,

In my last post I asked the question how much more bad luck Bram could have. He found out the hard way unfortunately over the last couple of days….

Since our last post Bram made really good progress, so much so that Bram finally got moved from High Dependancy Unit to a normal peadiatric neuro ward. Obviously a big step after almost 10 weeks of intensive/high care. When they were preparing to transfer Bram to his new ward we got the news that Bram had tested positive for CRE(Carbapenem-resistant enterobacteriaceae). A potentially very dangerous bug. As a result Bram had to be moved into an isolated room on his new ward. This bug is resistant to various antibiotics and very unwanted in hospitals. Every staff member working or visiting Bram now needs to wear gloves and aprons and everythings has to be discarded afterwards. Bram gets treated with antibiotics which do work for this bug and this has proved succesfull. No more infection markers in his blood. But once you contract this bug Bram will always be an occupier and thus test positive for this. For the remainder of Bram’s stay in hospital he will have to be in an isolated room.

Bram’s breathing is still not normal. It is irregular, especially at night. Big pauses at times, apneas, and desaturations. Last week Bram had a sleep study. He was monitored overnight, and when the result came back it was decided that Bram has to get a little bit of oxygen while he is asleep. Hopefully time will be able to heal this. A second sleep study was done later in the week with Bram being on oxygen and this was much better. So for now Bram sleeps with oxygen for the foreseeable future.

As we said Bram made real progress even with all that happening. We went home on tuesday evening feeling positive.
This all changed yesterday. When we came in Bram was different. He was extremely sleepy, would hardly open his eyes and did not really react to us. As the day went on Bram detoriated further, and in the afternoon began to get possible seizures/fits, an extremely high pulse rate, high temperature. All of Bram’s specialist were called in and they managed to stabilize him. They than organized for him to undergo a CT scan. This CT scan showed that his VP Shunt (a device which routes excess brain fluids away from the brain in his tummy) had become detached from its catether wire and was not working anymore. Bram’s neurosurgeons had never seen a failure like this before. But Bram is special, so he is the first one. Pressure had built up in his head again and he was rushed off to theatre for emergency surgery. Already his 7th round of surgery, they took out his VP shunt and catether, cleaned out the area of his brain, and installed a temporary external drain.

This operation went well, and Bram is doing a little bit better. He is very grumpy at the moment, most likely has a big headache but will pull through again. When Bram is good enough again he will need to have a new VP shunt installed in the next week or so. This obviously delays his chemo therapy even further and makes him a lot weaker that what he was just a few days ago.

Time and time again Bram has shown us how strong he is. This boy is a born fighter. He is the bravest person I know and I do feel sorry (not really) for his cancer, but it will stand no chance in his fight with him! The last week has been extremely tough on us and we hope that Bram’s luck will finally change. He deserves a bit of luck!
Love
Jeroen, Laura, Max and our “braveheart” Bram!

Dear friends,

Bram is continuing his good progress. He is getting stronger every day, and that means he is better able to overcome his neurological issues. We regularly see him smile again, he is starting to make noise again. It is so nice to hear him chuckle again, and in a way it is even nice to hear him cry again. Nothing worse than see him cry without sound.
Bram’s physiotherapy is in full swing now. Plenty of exercise and it already pays off. He is currently able to sit in his Bumbo seat for about 10 minutes, fully supporting himself. His neck strength is back, and he is starting to use his hands to play again. He is able to grab some of his toys and clearly enjoys it.
Medically Bram is doing well. His antibiotics for his brain infection are doing a great job, he is getting less and less medicines and needs much less medical attention. The only new issue Bram has is totally unrelated to all his other issues. He developed a scrotal hernia (scrotale liesbreuk for my dutch readers). How much bad luck can you have??
This is easily controlled for now, but eventually requires another round of surgery.

Last week we had a meeting with Bram’s medical team to discuss the way forward. The medical team now works to get Bram healthy and fit enough to start chemotherapy in Great Ormond Street Hospital. In Bram’s case, taking into account all his neurological issues, and his medical history and age the team finds it too risky to start with radiation as it could do damage to his brain. Chemotherapy is for now the best option. He will soon start a 12+ months intensive treatment with the intent of curing Bram of his cancer. When Bram grows older he will always have the opportunity to receive radiation if the cancer would return but the intent is to cure it with “just” chemotherapy.
The succesrate for this treatment is about 40%, meaning that he has a 40% chance of being cured with ONLY the use of chemotherapy. His chances for a cure are bigger than that but might require further surgery and or radiation if the cancer would ever return either during chemotherapy of in the future.
We are looking forward to start Bram’s journey towards a cure, but are scared of the time to come. Chemotherapy will be very hard on Bram. He will lose his hair, will be very weak, most likely have nausea spells with lots of other side effects possible. He (and we) will have to go though hell, but we will support him along the way and we hope and believe he will be cured at the end of all this.

In the coming weeks we expect Bram to continue to get stronger. Before he starts his chemotherapy Bram will undergo further surgery to get a gastreostomy (feeding line straight into the stomach) and a hickmann line (an IV line in his chest to administer medicines/chemo and take bloods from). Bram has shown us every time that he is a big fighter, and we are feeling optimistic that bram will continue to improve.

Thank you for all the messages of support so far. We don’t have the time to respond to everyone, but we read every bit, every comment, every card, every facebook/whatsapp message. It is amazing to see how many people care about us and Bram. It gives us strength and has changed our outlook on life. Thousands of pounds have already been donated by you, our friends, to Bram’s fundraiser. We will use this money carefully to make sure Bram and Max can spend time together, and that Bram gets whatever he needs, now and in the future.

Love,
Jeroen, Laura, Max and Bram!

Dear friends,

Bram is unfortunately back on the intensive care unit. Last sunday his CT scan showed increased levels of brain fluids. Some of these were tapped off a couple of hours later and on Monday afternoon Bram underwent his sixth round of surgery. The valve in his shunt got replaced with one which works at a lower pressure. This surgery has been a big succes and Bram has responded really well to this. He has been a lot better the last couple of days. We can finally hold him upright again, and the physio team even provided him with a chair to sit in. We really thought we had finally turned a corner…..

On Wednesday we were informed that a bug was found in his tapped brain fluids. This is potentially very serious and that’s why the medical team has started a very heavy dose of antibiotics to fight this bug. This treatment will last 4-6 weeks and will unfortunately delay his cancer treatment. It does give bram the opportunity to gain strength and buys him time while sorting out his remaining neurological issues. He does not properly swallow nor gag at the moment and his vocal cords are not working properly either. This causes problems for Bram because he can’t properly clear his throat of secretions. Hopefully by gaining strength he will be able to start to control this better.

When Bram’s bug treatment has finished and he is strong enough he will be transferred to Great Ormond Street Hospital to start his cancer treatment. Because of the fact that he is still on intensive care proton beam therapy can’t be applied for yet. Therefore to not lose any more time the latest plans are for Bram to start chemo therapy when her goes to Great Ormond Street Hospital. Currently we are still awaiting the complete treatment plans, as this very much depends on Bram’s condition. Bram’s surgeons are still talking about proton beam therapy, possibly after some chemo therapy. As you can read Bram’s medical case is very complicated.

Bram has had manu setbacks so far, but has overcome everyone so far. Yesterday we saw signs of the Bram as we know him when he gave us his signature smile. That smile gave us all the hope and strength we need in this incredible tough fight. He has won every fight so far and will KO his cancer!

We have been deeply touched by so many kind and generous donations in the last week. Almost £3000 have been raised so far. Our friends at toad hall nursery (max’s nursery) even did a 5 mile walk for Bram, and organised a cake sale. It really helps knowing that there is so much support for Bram in his big fight. Thank you all!

Love Jeroen, Laura, Max and smiley Bram

After 37 days Bram has finally left intensive care.
He is now on a high dependency unit.
Another important step in his fight.
Keep fighting Bram!!

Dear friends

Time for an update on Bram. He is currently on the Intensive Care Unit in Evelina Children’s Hospital. He got transferred there on sunday. On Monday surgeons performed an MLB investigation. They used a small camera to examine Bram’s throat and airway. They concluded they wanted to give Bram one more chance to start breathing by himself. On Tuesday morning his tubing and ventilator have been removed and I am very happy to tell you that so far this is going reasonably well.

Some neurological issues are still playing up which makes his breathing still not completely normal, but he is managing fine. We genuinely believe Bram has made an important step in his recovery! We expect Bram to finally leave the intensive care unit in the next couple of days.

We hope to return to Kings College Hospital in the next couple of days to continue working on his neurological issues. When he gets stronger we can than move on to his cancer treatment. For this we most likely have to go to Great Ormond Street Hospital, and hopefully soon after to the United States.

Bram has a long journey ahead of him, but he fights hard every day. We can see him getting a tiny bit better every day, and slowly the Bram as we know him is coming back to us. This gives us hope and strength!

We have been deeply touched by your generosity with the fundraiser we have started for Bram. We have lost touch with reality lately, have slept at home maybe 3 nights, eat in hospitals and fastfood restaurants, sleep in a Ronald McDonald Charity house and see Max maybe once a week. It is really tough going for us, but your friendship, generosity, kind messages, get well cards make it so much easier.

Thank you!

Jeroen, Laura, Max en Bram!

Dear friends,

Another week has passed. Bram is still on the intensive care unit. This morning he had another round of surgery (his 4th).His external drain was replaced by an internal shunt which reroutes excess brain fluids into his abdomen where the body will get rid of it. So far it looks like this procedure has been successful. Bram is awake again and moving arms and legs and looking around. We had hoped this surgery would not be necessary but hopefully this sorts this once and for all. Bram is still experiencing breathing difficulties. Therefore he is still connected to a ventilator. When he recovers from his latest surgery the medical team will focus their attention on his breathing. We expect that Bram will end up with a temporary tracheostomy, and have surgery soon to do so.

Progress is slow but we can still see Bram improve every day and are hopeful that Bram can make some big steps in the coming week.

We are still waiting for a decision from the NHS medical board regarding Proton Beam Therapy in the United States. We are not expecting a decision before Bram has recovered from his current surgery and his breathing difficulties have been sorted.

Bram continues his fight and we will be there to support him and make sure he comes out as a winner!

Thank you all for your support over the last month. Our lives have been turned upside down. We are upset, emotional and afraid. But we are also positive and upbeat. We see that Bram fights every day and your kind messages do mean a lot to us. We feel we are not alone in this fight!

Love,
Jeroen, Laura, Max and our wee fighter Bram.