Dear friends, the last couple of weeks have been challenging for us, especially for Bram. 2 weeks ago, Bram came home with a minor cold. When he got a bit of a temperature a few days later we did a COVID-19 test. Bram tested positive. Surprisingly though Bram appeared to manage this disease very well. He had a bit of a cough and a temperature, but nothing to really worry us. At the same time Anoek and myself ended up with a “normal” cold. Just as Bram was coming to the end of his 10-day quarantaine he fell ill again and quite quickly deteriorated to a point that we decided to take him to our local hospital. After some testing it was concluded he had picked up another viral infection (non-covid). He had a few tough nights needing up to 8 litres of oxygen, but eventually his prescribed antibiotics started to do their job and this morning Bram was discharged from hospital to further recover at home. Laura stayed with Bram in hospital the whole time, not being able to even leave the room due to covid restrictions. I tried to keep our household running with the help of Laura’s parents as well as flying in storm Arwen. We are absolutely shattered but grateful Bram is home and recovering. Love, Team Bram
Wow Bram!! We finally have some video evidence of something we have seen of Bram over the last couple of weeks. He is nearly walking!!! (And he still is unable to stand independently). Despite some doctors and physiotherapists saying that he would never walk, he is just doing that. Years of hard work by us, school staff and physio therapists, but above all by the hard work of Bram and his sheer determination he has achieved his first independent steps. Bram, you are incredible.
Today is International Childhood Cancer Day. It also happens to be exactly 5 years to the day we came closest to losing Bram when his line got infected and he ended up with a septic shock and nearly died. Cancer has forever changed Bram’s (and ours) life. He is severely handicapped and will have life lasting effects of his illness and treatment. Bram is a clear example that a child can survive cancer, but that the cost can be high. We need earlier detection, kinder and more effective treatment to give other children a better outlook.
We also like to share with you today the news that Bram recently had his final MRI scan and it is good news. Still a clean scan. As we have now passed the 5-year mark since he finished treatment, we have agreed with Bram’s amazing oncologist that more maintenance scans are not necessary anymore as the risk of further disease is so small now that we don’t need further scans unless there is a medical reason to do so. Bram is now a long-term survivor!
Today is day #1827. Today is the day that has been marked in my calendar for years. The 16th of October 2020. It is the day I have been looking forward the most in my entire life. It trumps my wedding day, it trumps your birthday, Max’s birthday and Anoek’s birthday. Today is a very very special day. It is the day the meaning of the C-word changes.
The dreaded C-word. Cancer…
You were still a baby, not even 1 year old when you just suddenly fell ill. Just vomiting like many other children your age did. But yours was different. You were sick without effort, without retching. During the next couple of days, you started to cover your eyes and you became inconsolable. When the doctors ran out of ideas, they ordered a CT scan. A simple 2-minute procedure….
Nothing was simple anymore after that CT scan. The radiologists instantly noticed a mass on your brain which eventually turned about to be a cancerous tumour. You, our baby had brain cancer. Our world fell apart. When I told you mum the news we cried together, but we also made a promise. We would stay strong, we would be there for you, because more than ever, you would need us.
The following 8 months were pure horror. 13 rounds of surgery, 2 of them to remove tumours, 6 weeks of gruelling chemotherapy and 6 weeks of radiotherapy. You spend 225 nights in hospital including nearly 8 weeks on intensive care. We went from one emergency to the other, never a dull day in your life. The odds were stacked against you. We many times feared we were about to lose you. During this dark period, we came to realise how special you are. You somehow had the strength and determination to keep the fight going. No matter how much pain you were in, cancer coming back, your brain stopping your breathing many times, you always came out on the other side. They say that most heroes wear capes, but not you. You are so strong that you do not need a cape.
In the following years you have had 11 more round of surgery (24 in total now), had a few more emergencies, serious pneumonia and very serious sepsis as well as 2 life threatening seizures. But somehow you have managed all this. Your rehabilitation is still ongoing, and everything happens when you are ready for it. As I always say, “Bram is Boss”. We know that when you are ready you will make the next step. After you came home at the end of 2015 all you could do was lie on your left side to watch your beloved Zandkasteel on your iPad. Look at you now! You have learned to sit, crawl, and are now able to walk holding on to something/someone. When you are ready you will show all of us that you can stand and eventually walk.
It is incredible to see you grow up. You keep on inspiring us and have touched so many lives. Despite the multiple handicaps you are a happy boy. We love your big smile, and your cuddles and kisses. Your journey has had a massive impact on our life, it has been extremely tough. The worry and stress are enormous. But it is all worth it. Nothing is more satisfying than being able to care for you and your siblings. It is a privilege to meet my hero, not just once, but every single day. Bram, you are my absolute hero and inspiration.
Looking at the future we do not know how far you will get. You have shown us every time that limits are not for you. Many times, you have proven us and the professionals wrong. No limits. Just enjoy every day.
Your fighting spirit has brought you to this day. Your doctors and nursed did all they could, and on this day, 5 years ago, you had your last cancer treatment. No more options left at that point. It was life or death. Your MRI scan a few weeks later showed that the treatment was successful, and you returned a clean scan. Many more clean scans have followed since. You have been in remission for 5 years today. And we are aware that there are no guarantees in life, but we believe that we can now call your cancer cured. So, from today onwards for us the meaning of the C-word is the beautiful word… CURE
Bram, congratulations on achieving this milestone. That many more milestones can be achieved. Continue being this awesome boy, keep inspiring people, be the boss and never accept any limits.
Time for a well overdue update on Bram. The last couple of months have been very different. Due to COVID-19 Bram has been advised to shield. So since March 17 he has been at home with us. And to best protect Bram and ourselves we made the decision to shield as a family and cancel our night nursing team. For the last couple of years we have had NHS nursed come to our house every night to look after Bram. But for the last 4 months it has just been Laura and myself looking after Bram.
Looking after and caring for Bram is the greatest privilege in life. He is a very special young boy who continues to inspire despite all the horrors in his young life. It is extremely rewarding but equally exhausting to safely care for him. For the last 4 months we have bee looking after him 24/7, with us having to get up up to 10 times a night to care for his needs. Add to that that Bram usually wakes up at 5 o’clock as well having to care for Anoek and Max (and be Max’s teacher), it is fair to say we are exhausted. From tomorrow onwards Bram’s NHS nurses will return and Laura and myself are looking forward to some undisturbed nights. 😴😴
With Bram being shielded most of his hospital appointments have been cancelled. One area of his health though could not wait any longer. Bram’s oncology team did not want to wait any longer (9 months since previous scan) than they had to to have his 6-monthly mri done. So last week Bram and myself made the trip to Great Ormond Street Hospital. With all the COVID-19 precautions in place, we had ambulance transport, mandatory coronatesting a couple of days earlier (both negative for Bram and myself 👊🏻),face mask and an isolated room we had a good visit. All went nice and easy. Bram had a full general anaesthetic and was back on recovery about an hour later. 4 hours of recovery on the ward before we had an ambulance ride home.
And than the wait starts….
After 6 days Bram’s oncologist contacted us with the amazing news that Bram had another clean scan. No evidence of tumour! Bram has now been cancer free for 4 years and 9 months. Go Bram!
With that out of the way Bram has now been approved for growth hormone therapy. In an attempt to save Bram’s life with radiotherapy his pituitary gland got hit as well (we were warned this was a potential side effect, but accepted this in an attempt to save his life) and as a result does not produce enough growth hormones. Growth Hormone Therapy will give him a top up to normal levels. This will hopefully help him grow a bit quicker as he lags behind a bit. Also it might help with his muscle tone. It will involve us giving him a daily injection in his tummy/upper leg.
It is our hope that our small hero now becomes a big hero!
We are about to start our 5th night with Bram in hospital again. Last week he fell ill and on thursday we took him to our local hospital where he was diagnosed with pneumonia (longontsteking). He has been on antibiotics since and they are very slowly starting to do their job.
Bram has been hit quite hard and still needs extra oxygen day and night to breathe safely. Laura and Myself are swapping between caring for Bram in hospital and looking after Max and Anoek at home. Luckily Laura’s parents are close by go give us a hand but life has been pretty hectic over the last few days.
Doctors believe Bram needs some time to fully recover so we expect him to be in hospital for a few more days at least.
We are sure Bram will bounce back from yet another setback, and we will make sure we take plenty of time with his recovery with the winter just ahead of us.
Bram’s amazing story continues….. with the good, bad and downright ugly.
It started all late september with a routine sleep study. Bram and I stayed for an overnight sleep in Great Ormond Street Hospital to test Bram’s respiratory system. The results were as expected with no changes needed on his ventilator. The next morning Bram was put to sleep and had his 6-monthly MRI scan done to see if he is still in remission. After a very long day we came home and the wait started to hear back on this scan.
A couple of days later Bram and I were back in Great Ormond Street Hospital for a quick consult with the Maxillofacial team to discuss more botox treatment to prevent Bram from drooling. We are currently awaiting a date for this.
When Bram came back from school a few days later Bram looked very pale and not himself. So it was not surprising he fell asleep a lot earlier than normal. What did surprise is though was that 2 hours later suddenly his monitoring alarm went off to warn us of an extremely high heart rate of 195 bpm (normally for Bram around 100-120). We called 999 and while we were on the phone Bram got a massive seizure (only his 2nd ever). Most seizures last only a few minutes for people, but this one, despite 2 lots of emergency medication and specialist treatment on A&E, lasted 2.5 hours!!
Bram and I went by emergency ambulance to our local hospital where they tried for nearly 2 hours to stop his seizure. When it finally stopped, we were than transferred to King’s College Hospital in London to go the the High Dependancy Department.
After a thorough checkout we got discharged after less than 24 hours, as we could give Bram the same care at home as in hospital. Bram’s dose of emergency medication got tripled! In dose, and his preventive anti-seizure medication got a hefty increase as well.
Just as we thought the dust was settling after a couple of days at home it went from bad to worse. Last week on Monday Bram fell ill again very quickly. He was unable to get enough oxygen in his body, got a real high heart rate (180+) again together with a really high body temperature (39.4). Another call was made to 999 and another emergency ambulance was dispatched to our house. This time Laura and I accompanied Bram in the ambulance. A very quick ride with all bells and whistles on to get Bram to A&E.
Within a few hours Bram stabilised, and we moved to the paediatric ward. It turned out that Bram had a bad chest infection caused by getting his own secretions/saliva in his longs when he had his seizure.
In the end we stayed 48 hours in hospital. Bram is still recovering from all of this. He is still very tired, and is having severe 💩💩 from the antibiotics he is getting. We are starting to see our normal Bram again. He is and probably always will keep is on our toes.
We don’t yet know what exactly is causing his seizures, it could be epilepsy, late effects of radiation, his aquired brain injury, a stroke or tumor or something else. This will need further investigation in the next couple of months, and we might never get a full explanation for these. We can only hope for now that his anti-seizure medication helps and if he were to get another seizure that his emergency medication will stop the seizure a lot quicker.
But the good news came last. Yesterday Bram’s oncologist informed us that Bram’s lates MRI scan has no evidence of recurrence. He still is clean!
In a few hours we can celebrate the anniversary of finishing Bram’s cancer treatment. It has been succesfull so far and despite everything that has happened he is still with us and in remission.
That’s Bram 4 years cancer free!
We are so proud of this amazing little boy. The amount of bad luck he has experienced, the amount of pain and hardship and still every day he shows us what a heroic fighter he is. He is our inspiration and makes us believe he will achieve so much in his life.
Bram, we love you!
Love, Team Bram (Jeroen, Laura, Max, Bram and Anoek)
With the school year coming to an end last week we were looking forward to 6 weeks of relaxation.
It started off well and we celebrated Max’s 7th birthday. He had a nice day and got lots of gifts. On monday we celebrated Bram’s cancer surgery anniversary. 4 years since the second tumor was removed, and still cancer free.
On Wednesday night at 0300 while we were deep asleep Bram’s night nurse rang our emergency bell. When we came down Bram was having a major seizure. His whole body was shaking uncontrollably, he bit his tongue, struggled with his breathing all while he was unconcious. The nurse had already put him in the recovery position to protect him from further harm. We immediately called 999. Bram’s seizure lasted for a very long 13 minutes. Just after it stopped an ambulance and 2 paramedic cars arrived.
Bram was give some emergency medication and than rushed to East Surrey Hospital. There he received more emergency medication followed by a CT scan. The CT scan showed no issues and after some consultation if was decided that Bram needed an intensive care bed. East Surrey Hospital does not have a peadiatric Intensive Care Unit so other hospitals were contacted. Eventually it was decided that Great Ormond Street Hospital (GOSH) was the best place to be. An intensive car ambulance with 6 staff was sent out to transport Bram and myself to GOSH. Laura went home to look after Anoek and Bram.
After arrival in GOSH more tests were run on Bram to determine a (potential) cause for this seizure as Bram did not have any history of seizures up to this point. Blood and brainfluid samples were sent to the lab, Bram was put on special antibiotics to cover any potential infections. Furthermore an EEG test was run, to monitor if Bram was having any more seizures. Luckily so far everything has come back okay and doctors believe that a bit of fever might have been the trigger for his seizure.
Going forward Bram will have preventive anti seizure medication twice a day. Also we have been provided with emergency medication if her were to have another seizure lasting more than 5 minutes.
After one night in hospital Bram was discharged yesterday. He is now recovering at home. He is still very tired but starting to be his old self again. As you can see on the photo. No matter how hard Bram falls, he always bounces back.
Bram gave us a massive fright with this seizure and the potential for further seizures makes for some scary thoughts. But we know that Bram is a fighter and we join him in this fight. So much get thrown at him, but he recovers everytime. We could not be prouder of him.
