Dear friends,
Bram is doing well at the moment. He is recovering from his last surgeries. His tracheostomy is making his life a bit easier. Only a little bit of extra oxygen required (less than 1.0 litre per minute). He is happily playing in his little chair again and i am pleased to report that he is finally able to sit unsupported at times. He is still a bit wobbly but his balance is good enough to manage. This is quite remarkable since the tumor was in a location which is responsible among other things for balance and coordination. He is also starting to roll over on his front and we have had him sit on his hands and knees again as well. He keeps on amazing everyone.

After staying in GOSH for just over 2 months Bram got transferred to UCLH last tuesday. And Bram got a nice room. Located on the 11th floor he has a superb view over London. On wednesday a CT scan was done and measurement were taken to prepare a face mask for Bram to be worn during his radiation sessions.

Tomorrow (monday) Bram will receive his first radiation treatment session. The coming six weeks, every day, monday to friday he will have these sessions. He will be under general anaesthetics every day to ensure he can’t move at all. We have our fingers crossed for him.

Realistically this is his last (but best and preferred) treatment option. Radiation has encouraging success rates. We hope that this will cure Bram. He has fought so hard and will keep the fight going. We are extremely proud of Bram. He has been through hell, but he is incredibly strong and keeps smiling. Please pray, send positive thoughts or light a candle for him. We believe it will help him beat this horrible disease.

Thank you!

Love,

Jeroen, Laura, Max and “mr smile” Bram

Dear friends,

Bram is amazing. He just had 2 more rounds of surgery this week. And I am glad to say they both went well. On Wednesday Bram had a Lumbar Punction done. A CSF sample (brain fluids) was extracted from his spine and is currently checked in the lab. This is done to make sure there are no tumour cells in his spine which might need treatment as well. We hope to get the result in the next couple of days.

On Thursday Bram had a tracheostomy inserted in his windpipe. He now breathes through this, bypassing his throat. This was done to give Bram a safe airway during radiation treatment. Bram is currently receiving oxygen support, but hopefully will be able to live without oxygen in the near future. As a result Bram has no more tubes or dressings in his face and we can finally see his normal face again 😃.

In the next weeks Laura Sengers and I will receive the training necessary to care for Bram. All going well Bram’s tracheostomy will be taken out after treatment has finished and all swelling has disappeared.

Bram is getting used to breathing through his tracheostomy, suctioning to remove his mucus is much more comfortable than before, and no more oxygen tube in his nose. His smile has already returned. He is still very tired from these operations but will get stronger very soon.
The plan is to stay on the current ward for a week, than move back to his oncology ward for a couple of days before being transferred to UCLH. After arriving in UCLH a CT scan will be done and a face mask will be custom made. Actual radiation treatment is scheduled to start on Monday 7th of September.

Love,

Jeroen, Laura, Max and Bram

Dear friends,Yesterday Laura and I met up with the oncologists from Great Ormond Street Hospital (GOSH) and the radiation consultants from University College of London Hospital (UCLH). They explained us the plans for Bram. Radiation is the best option to cure Bram and time is of the essence. Therefore they strongly recommend IMRT (intensity modulated radiotherapy). This will happen in UCLH. This consist of 6 weeks, monday to friday of radiation to the back of his head, where the tumour was located.

Bram will have to be under general anaesthetics every day. He needs to ly still and will wear a custom made mask durong every radiation session. Actual radiation is only a couple of minutes, but the procedure takes about an hour every day. Taking into accounts Bram’s medical history the team recommends Bram to have a tracheostomy. He will get one next week in yet another round of surgery.

Shortly after his surgery he will be transferred to UCLH where another preparation scan will be done with the aim of starting his radiation in the first week of September.

When Bram finishes his radiation he will have finished his cancer treatment. He will have to spend some more time in Hospital to recover but hopefully we will be able to take Bram finally home soon after.

Bram is still improving every day. His vision has returned to normal, he is a happy smiley boy again, sits in his wee chair again and even had his first proper play with max in the weekend. The only negative at the moment is that he tested positive for the RSV bug (a common cold). No problem for most people (Laura and Max are/were ill as well), but for a kid who still is recovering from surgery and chemotherapy a big issue. He is isolated in his room so he won’t spread it, staff needs to wear facemasks and Bram gets checked often. Luckily so far it is not bothering him too much. A very snotty nose and the occasional spike in temperature. But he still smiles (what does stop him smiling???).

Bram has had steroids for five months now, but his medical situation does not require it any more and his body produces enough again to safely stop his steroid doses. Another one of his medicines disappearing!

We are hopeful that things are finally starting to work in his favour. He is doing exceptionally well. Bram surprises everyone every time. His surgeon called him remarkable. He is our Superhero. And superheroes always achieve a happy ending!!

Love,

Jeroen, Laura, Max and our superhero Bram

Dear friends,Bram is doing amazingly well at the moment. Only six days since his tumour was removed in a 5.5 hour operation. Bram spend one night on intensive care. The next morning he was taken off the ventilator and that went well. This was one of our big worries as it took six weeks last time before Bram was able to breath without a ventilator.

The only issues we can see with him are that his eyes are squinted like last time and that his swallow is not working. But none of the other complications he had last time.

As you can see Bram is already sitting up again in his chair, playing with his toys. His signature smile is returning as well. He is made of rubber I think. No matter what happens, Bram bounces back!

The medical team is very pleased with Bram’s progress and they were able to share with us today the good news that the MRI scan showed a clean picture. The WHOLE tumour has been successfully removed again! We are overjoyed with this result. This is the best possible outcome and gives Bram the biggest chance for a cure.

As of today we have stopped chemotherapy for Bram. His current protocol does not work, and the medical team does not believe a different combination of chemotherapy will work either.

That only leaves radiation as a treatment option. Conventional radiation in London or Proton Beam Radiation in the United States. Both are equally effective and the risks/benefits are similar. With that in mind Proton Beam Therapy would be a risky option for Bram. It would take at least 6 weeks before we can start that, Bram would have to travel to the U.S. and would not have the care available he would have here where the team can monitor and intervene much better

Going forward the medical team has recommended us conventional radiotherapy. Normally only given to children 18 months or older, the team has decided that Bram should start as soon as possible, and ignore the 18 month guideline. Bram is currently 6 weeks away from being 18 months old but the team does not think Bram can wait that long. His treatment needs to start soon. We have a meeting on Monday to get more information about this, and what the associated risks and benefits are. We do know treatment would be about 6 weeks of radiation, 5 times a week. He would have to undergo a general anaesthetic every day for about half an hour. Actual treatment is only a few minutes every day.

Radiation of children as young as Bram is has only happened on a small scale in the last decade. It has promising results, but doctors are unable to predict what kind of issues it creates in the decades to come. What they do know though is that radiation will damage Bram. He will have life long side effects as a direct result of radiation treatment. Hopefully these side effects will be minor, but only time will tell.

After next week’s meeting to discuss his treatment plan/timeline and a subsequent lumbar punction (extract some spinal fluid from his back) to check his spine is cancer free Laura and I will have to decide if we want to proceed with this plan, want the Proton Beam Therapy or decide that we don’t want to do either one and just wait and see (very unlikely and extremely risky).

We do feel Bram has made good progress and a cure is still possible, and unless the current information we have changes, will go forward with the suggested plans. Bram has had 11 surgeries now, 25+ CT/MRI scans, 3 rounds of chemotherapy, spend nearly 60 days on intensive care and he is still smiling and fighting. He is an amazing boy, and maybe finally his luck has turned and things start to go his way.

We want to thank you all for your support. The last week was extremely tough, but your positive thoughts and prayers have helped him.

We will keep you updated, his fight starts a new chapter.

Love,

Jeroen, Laura, Max and Bram

Dear friends,

Bram is back on intensive care. His surgery was successful, the surgeon was able to remove all of the tumour he thinks. An MRI scan in a couple of days will give a final result. We have visited Bram already, he is awake at times and moving all limbs. Currently still ventilated but the plan is to take him off that later today. So far Bram is doing well.
We would like to thank everyone for their prayers, positive thoughts, and many many candles which were burned for Bram today. Bram has many friends, thank you all! Another important step is made in Bram’s incredible fight. Bram will now start his recovery again and hopefully soon we will have clarity on what the plans are with his radiation treatment.

We are enormously proud of Bram!

Love,
Jeroen, Laura, Max and Bram

Dear friends,

Unfortunately I do have to share very bad news again. Bram has detioriarated over the weekend after his third round of chemo. He was having more and more issues with breathing and was breath holding a lot. An MRI scan was done this morning and it showed that the tumour has grown quickly. Chemo therapy is not working for Bram. 

Tomorrow morning Bram will have to undergo surgery to resect(remove) the tumour. This will have to be followed up by radiation soon after. The medical team is currently assessing whether to go for conventional radiation in the UK or for Proton Beam radiation in the US. His surgery is not without risk for Bram, but it is the only option at the moment and it needs to be done urgently. 

We are devastated and scared with current events. But there is still a plan, and that gives us hope. Bram is an amazing fighter, our hero. He will fight again to beat his cancer and we will be at his side to support him. Over the next couple of days I will keep you all updated.

Bram will need all his strength in the next couple of days. Can you support him by praying for him, light a candle for him, or just send him some positive thoughts. 

Love,

Jeroen, Laura, Max and our heroic Bram

Dear friends,

We have been in Great Ormond Street Hospital for nearly three weeks now. Bram had his second round of chemo last Friday. So far chemo has been kind to him. No big side effects at the moment. Just sensitive skin. He is a very happy boy lately. Smiling a lot, chatting (he calls everyone mama!).

Because Bram is now quite stable we have been able to have him sit in his chair a bit more. And also on the floor on his play at. He can’t sit unaided yet but is making good progress. He really starts to play with his toys again.

The cyst in Bram’s head keeps on refilling itself and causes pressure on the brain. So twice so far the medical team have drained his cyst and this keeps everything nicely under control.

Bram has his own private room, with a bed for either Laura or myself to stay with him. This also gives us a better opportunity to have Max come over to visit and sit in Bram’s room and play. Spending time together with the four of us is something we have missed a lot. It gives us the energy to get through these tough times.

Our life is very complicated at the moment, Laura and I are hardly seeing each other. One of us is in hospital with Bram while the other one is at home with Max. We only have some time together on the days we swap. And even than it is only a couple of hours together in hospital frown emoticon but it is far more important to be there for Max and Bram. Next week I will fly to the Netherlands with Max. Max will go on his summer holidays and stay with my mum and dad for the week. We are sure he will have a great time being away from all this. I will only stay a few days myself, and than come back to be on Bram’s side again, and spend some time with Laura smile emoticon

Bram is now slowly starting to lose his hair. It is noticeably getting thinner. Unfortunately one of the side effects from chemo, but we are looking at it in a positive way. It shows that chemo is attacking his fast growing cells (and hopefully his cancerous cells). We will have to wait till his next MRI scan to get a better idea of the total effectiveness. This should happen in about a month from now. For now we are happy with his current state and progress.

Love,
Jeroen, Laura, max and Bram

Dear friends,

Another roller coaster of a week. On Monday Bram had a final CT scan of his head to check if his brain fluids had returned to normal. They had, but the scan also showed that the cyst in his head was growing quickly. It now measured 4 by 5 cm. This growth needed intervention. After a day of discussion among the neuro team it was decided to drain the cyst, and insert a little reservoir in Bram’s head. This so the cyst can be drained again in the future were it to fill up again. So on Wednesday Bram had his 10th! round of surgery. This went successful and we met up with Bram again a couple of hours later on Intensive Care. As a precaution Bram was kept on the ventilator, so this could be taken off him the next morning in a nice and controlled fashion. But Bram is boss, so he decided to move his head so violently that the ventilator came out. My boy is determined to get his way! He was not having any problems with his breathing and he was kept off the ventilator.

On Friday the unthinkable finally happened. After 104 nights he got discharged from King’s College Hospital, and transferred by ambulance to Great Ormond Street Hospital. With the amount of problems Bram has had so far we have often wondered if we would ever leave. Laura and I would like to thank all the staff involved in Bram’s care at King’s for their fantastic work. Their care for Bram and us has been amazing. They laughed and cried with us, gave us hugs. We will miss you!

That same afternoon we met up with Bram’s oncology team. They gave us a rundown on what to expect during chemotherapy. His total treatment will last 379 days, and he will receive chemo every 14 days. They explained us why to use chemo (to try save his life), all the possible side effects (hair loss, sore mouth, pins and needles in limbs, vomiting, constipation, reduced kidney function, reduced fertility, potential hearing problems etc…) and how they would manage all of this. It is very clear that we are still working to cure Bram, but also that success is far from guaranteed. We finished our chat by giving our written consent to start chemotherapy for Bram.

Bram has a private room in hospital, where either Laura or myself can stay with him at night. We will be there for him, day and night to support and comfort him during this journey. But finally Bram is stable enough that one of us can be at home as well. Max misses us enormously and is as much as a victim as Bram is. We are pleased we can spend more time with him as well now.

On Saturday Bram had his final checks done and that afternoon started his chemotherapy treatment. His first dose was a small syringe with a drug called vincristine and a drip bag with a drug called car operation. This was administered in about one hour. Also he was given lots of other drugs to counter the side effects. We are pleased to say that so far his side effects are minor. Just a little bit of vomiting. But Bram is very settled for the moment.

On Sunday we cleared out are room we occupied at the Ronald McDonald House Camberwell. This charity house provided us 105 nights of accommodation, only minutes away from King’s College Hospital. This has been our home for the last couple of months. Hotel style bedroom combined with communal kitchens/laundry/living rooms/garden. All provided free of charge to families with very sick kids. The staff and other families were amazing. Being able to have a chat after a long tough day in hospital when everything seems going wrong, or share good news was enormously helpful. I can’t even imagine how hard our life would have been without this place. Thank you!

Bram is now recognition from his chemo dose, and is getting to know all the medical teams here in Great Ormond Street Hospital. They will continue to get Bram as healthy and mobile as possible. We hope Bram’s health stabilises a bit now, no more surprises. It will take weeks before we know if chemo is working at all. But finally we can say Bram’s cancer is being treated.

Love,
Jeroen, Laura, Max and Bram

Dear friends,

Another week has passed since our last update, and again a week with ups and downs. On monday Bram had his 9th (and final) round of surgery before chemotherapy. This one lasted just over 5 hours and the surgeon fixed Bram’s scrotal hernia, inserted a hickman line (an IV line to be used for chemotherapy) and a gastreostomy (a feeding line straigh into his stomach via an opening in his belly). This surgery has been succesfull and Bram is slowly recovering. But all these surgeries are starting to take its toll on Bram. So much so that during this operation this week they had to stop for 30 minutes to give Bram some time to recover before the continues the procedure.

On thursday we got the news that the supsect tissue seen on the MRI scan is indeed regrowth of the tumour. We are disappointed and upset once again. The medical team currently is of the opinion that chemotherapy is the best way forward, and no surgery to be had. This is still up for discussion though and we expect a decision early in the coming week. Tomorrow Bram will have one more CT scan to confirm his brain fluids are back to normal and if they are he can be transferred to Great Ormond Street to start chemo in the middle of the week.

Yesterday we had a special day. Bram and Max had their first play together since Bram got hospitalized over a 100 days ago. A very touching and special moment for them, and for Laura and myself. Max and Bram stacked and whacked their stacking cups as you can see in the photos.

Today is a special day as well, Father’s day. And in these circumstances one I will never forget. I spend some time at home this morning with Max, and spend time with Bram in hospital later. I would have never imagined this, but enjoyed every single second today with them. My own father showed me again today why he is such a special person (so is my mum!). They came over from the Netherlands this weekend to visit and support us. So not only my kids spend some time with their dad, so did I with my dad! I can only hope that Max and Bram will be as proud of me in the future as I am proud of my dad! Pap, ik hou van je! (Dad I love you!)

The coming week hopefully concludes our time in King’s College Hospital and will see us transferred to Great Ormond Street. Bram will finally get the medical help he needs to kill the beast called cancer once and for all. Go Bram!

Thank you all!

Love,
Jeroen, Laura, Max and Bram

Dear friends,

Bram and us have had an extremely tough week. On Monday Bram was planned for surgery. This was cancelled at the last moment because his brain fluids readings were unsatisfactory. Also that day Bram started to experience breathing difficulties. This is most likely caused by scar tissue growing in his throat/windpipe in combination with having a minor cold. This scar tissue was sort of expected and is a result of having been on a ventilator for 5 weeks previously. Currently Bram is getting steroids to help open his airway and he is managing his breathing quite well.

Poor Bram also started leaking brain fluid from his head where the external drain was coming out of the skull. Bram had to have two stitches done, but unfortunately WITHOUT anaesthetics as the leak was to close to the brain fluids. Obviously painful for Bram, but our strong boy managed this without getting upset. Bram is tough as nails!

On Friday Bram did go down for surgery to have his external drain removed and to have a VP shunt (drain) installed in his head. This operation went well and Bram is currently recovering well. He is a happy boy today and has already sat up in his seat to play with his toys.

Prior to his surgery Bram had an MRI scan done as well. Done to have a starting picture before he starts his chemotherapy. The result is NOT what we wanted. It shows Bram has a little cyst, and some suspect spots in the area of his tumour. The medical team is unsure of the nature of these spots but it is POSSIBLE that these are regrowth of his tumour. The team is currently investigating to get a more detailed diagnosis but they don’t need to remove these spots surgically and want Bram to start his chemotherapy to deal with this.

On Monday Bram will have more surgery to have a scrotal hernia fixed and to get a central line installed. This should be his final surgery before we can start his chemotherapy. We are hoping to start this within the next two weeks.

We are very very upset and scared, this fight just became even tougher. We hope Bram’s luck will finally change. He is still laughing. He is such an inspiration to us. Please send your positive thoughts and prayers to Bram. He needs it! Thank you.

Love
Jeroen, Laura, Max and Bram

Beste vrienden,

Bram en wij hebben een extreem zware week achter de rug. Op maandag had Bram een operatie moeten ondergaan maar deze werd op het laatste moment geannuleerd omdat de waardes in zijn hersenvloeistof niet goed genoeg waren. Die dag begon Bram ook ademhalings moeilijkheden te krijgen. Dit wordt waarschijnlijk veroorzaakt door littekenweefsel in zijn keel en luchtpijp in combinatie met een lichte verkoudheid. Deze ademhalings moeilijkheden waren enigszins verwacht en zijn een resultaat van 5 weken aan de beademing liggen. Bram wordt behandeld met steroïden om zijn keel wat wijder te maken en Bram heeft zijn ademhaling weer redelijk onder controle.

Arme Bram begon op maandag ook hersenvloeistof te lekken op de plaats waar zijn drain uit het hoofd komt.
Twee hechtingen zijn geplaatst om dit lek te stoppen. Maar omdat het lek te dicht bij zijn hersenvloeistof zit moest hij dit ondergaan ZONDER verdoving. Dit deed natuurlijk veel pijn maar Bram kon het aan zonder overstuur te raken. Wat een sterk ventje!

Op vrijdag heeft Bram alsnog zijn operatie ondergaan om zijn externe drain te verwijderen en een interne drain te plaatsen. Deze operatie is goed verlopen en Bram is momenteel aan het bijkomen. Hij heeft alweer in zijn stoeltje gezeten en met zijn speelgoed gespeeld. En natuurlijk is Bram alweer vrolijk.

Voor zijn operatie op vrijdag heeft Bram ook een MRI SCAN ondergaan. Het idee daarachter was om een uitgangspunt te hebben voordat we met chemotherapie beginnen. Het resultaat was NIET wat we wilde horen. Het laat zien dat er een cyste en wat verdacht weefsel zit op de plek waar de tumor zat.
Het medisch team weet niet zeker wat voor weefsel dit is maar MOGELIJK zijn het tumorcellen die hergroeien.
Het medisch team doet verder onderzoek maar op dit moment hoeft dit niet chirurgisch verwijderd te worden
En willen ze dat Bram zijn chemotherapie gaat starten.

Op maandag zal Bram wederom een operatie ondergaan om een scrotale hernia te repareren en om een infuuslijn in zijn borst te zetten die gebruikt gaat worden voor de chemo. Dit is hopelijk de laatste operatie die hij zal moeten ondergaan voordat we kunnen beginnen met chemo. Hopelijk is dat in de komende twee weken.

Wij zijn heel heel erg overstuur en bang. Bram’s gevecht is een stuk moeilijker geworden. We hopen dat het geluk hem nu eens eindelijk gaat toelachen.
Bram zelf lacht nog steeds! Hij is een enorme inspiratie voor ons. Bid voor en zend je positieve gedachten naar Bram alstublieft. Hij heeft het nodig. Dank u wel.
Liefs,
Jeroen, Laura, max en Bram