Bram has had a busy couple of weeks with 5 visits to Great Ormond Street Hospital. He is settling in at school and currently attends 3 days a week. We hope that he will be able to attend 5 days a week from June onwards. So far school has been good for him. Bram shows more interest in his surroundings and now crawls though the house. Mainly between his iPad and our television! He is now able to show us when he wants to go to his own bedroom to play, and some nights he gets into his own bed ready to go to sleep.
Medically things have been a bit of hit and miss. Winter is a tough time for Bram. He has had a few colds and that results in him breathing not as good as normal. His latest sleep study showed that he had increased CO2 levels and decreased oxygen saturation levels. His ventilator settings have been changed to aid his breathing and to make sure he is coping well.
Bram also had investigative surgery on his airway to determine its condition. It showed that although the airway is in a good condition it is rather small, and partly obscured by his vocal chords. Another look is scheduled for in a years time. For at least another year Bram will have his tracheostomy.
Bram’s eyesight has been checked, he still has a squint in both eyes, but we are starting to see some minor improvements. As Bram is coping well with his eyesight no treatment is planned for the foreseeable future.
As a result of the radiotherapy on his brain it has now been determined that Bram is hormone deficient and over the next couple of months he will most likely start growth hormone treatment. This will aid his growth, bone density and hopefully his have a positive impact on his neurological health as well.
The positive thing on his health is the most important one of all. His latest MRI scan shows Bram is still in remission. That is him now cancer free for 40 months! A huge relief for all of us.
We have no planned hospital appointments for Bram for a few months now. Actually, Bram’s next hospital visit is a very special one we hope. To meet his new brother/sister when he/she is born in a couple of weeks from now!
Our hero had surgery again yesterday procedure number 21! To reduce drooling Bram had botox administered to his saliva glands. Surgery went well and after a long day Bram and I returned home at 2300. In the next couple of weeks we can hopefully see a reduction in his drooling. Fingers crossed.
Next week we have surgery number 22 planned. Investigative surgery on his airway. This combined with an overnight sleep study will determine if the medical team wants to try if Bram can live without his tracheostomy.
Today is a special day for us, a very special day. After a few settling in sessions over the last couple of weeks, Bram is having his first day at school today.
Our remarkable little boy, but great fighter has reached a major milestone. We often thought this day would never happen. Bram truly has no limits and will continue to surprise and inspire us.
His many disabilities have made it impossible so far to even attend a single day of nursery in his life. But with the help of so many, Bram has grown stronger and stronger and we feel finally that it is safe for Bram to attend school. He is going to a special/needs school in Reigate where they are able to give him all the attention he needs as well as cater for his medical needs. Transport has been organised to get him and. His medical escort to and from school. Initially 3 mornings a week.
Bram will be able to socialise with other children and learn new skills. It will be tough and tiring for him, but Bram will adapt and conquer this challenge as well.
As you can see in the photo Max is a very proud big brother, and helped Bram to stand up for a photo. Bram is still unable to stand unsupported, but with a bit of support of the wall and Max it goes pretty well.
Bram going to school is a big change for him, but equally for us. We have cared for him since the day he was born, we are experts in him and his needs and we need to let go of him now that he is away for a few hours.
For the first time since Max was born more than six years ago, Laura and myself have some time off. We will need some time to adjust the new situation and are looking forward to spend some time together and have a bit of free time to do the simple things in life we have been unable to do. This morning we went grocery shopping in Tesco for the first time together in years. Our life will finally become a little bit more “normal”.
3 years ago Bram had his second brain tumour removed. It was a make or break surgery that day. In the days leading up to this Bram had deteriorated and stopped breathing a couple of times a day. We knew that if the surgeons were unable to remove the tumour completely we most likely would lose Bram in the next couple of days/weeks.
The surgeon did his magic that day, and the follow up radiotherapy has resulted that he is still cancer free to this day.
He still has a long list of problems, but as long as cancer does not rear its ugly head again we can handle it. Bram is enjoying a few more weeks off before he will be able to start school later this year.
He will attend a special needs school in reigate, and we will have a phased start from September with the aim of an official school start somewhere this Autumn. How kids do grow up!
We are excited and we believe school is what he needs. More therapy and interaction and help to develop himself, even superheroes like Bram with all his superhuman powers can develop more.
But before that is is now time to celebrate his anniversary in his quest to be cured of cancer.
It has been a while since I have updated you on Bram’s progress. And i am delighted to say he is doing well. In the last couple of weeks we have had appointments with respiratory, endocrinology and opthalmology, and all were happy with Bram’s progress.
Bram is working hard on learning to stand. To help him he is now wearing a lycra suit most of the day as well as leg gators to give him extra support. We can already see the difference. He is able to stand up straighter and longer but still needs to hold on to something. It has given him the confidence that standing up is fun and he does it more often now. We are hoping to see him stand unsupported for a short time maybe by year end. Fingers crossed.
More surgery happened to us, but for a change it was not Bram, but Max. Earlier this month he had surgery to remove some of his baby teeth. Max is just as fearsome as Bram is. He has so often visited Bram in hospital that a hospital is a friendly environment for him. He had no nerves, was proud to have surgery and did not shed a single tear. We are very proud of him.
Some of you might know that over the last couple of years Laura struggled a little bit with her mental health. After Bram fell ill and we went from emergency to emergency she struggled. We both realised this and she took the courageous step to deal with it. It was the first day she left Bram’s bedside to visit her own GP. Our GP was amazing and completely understanding and he prescribed her a high dose of antidepressants and sleeping tablets. When a few months later Bram’s tumour had returned she got prescribed the highest dose our GP had ever prescribed….
These antidepressants, sleeping tablets, counselling, all your support and Bram’s incredible fight helped her deal with struggle. After Bram got home and with him improving all the time, so did Laura. And just over a year ago she started the journey to get rid off her medication. It was hard for her at times, the body gets used to antidepressants and sleeping pills, but Laura was determined. She quite quickly was able to sleep without sleeping pills and reduced her antidepressants. And for the last two months she has been completely off her medication. I am pleased to say this is going really well.
Laura is an amazing mother to Bram and Max. She is Bram’s main carer and with everything that has happened in our lives over the last couple of years, all the emergencies, all the worry about Bram’s uncertain future, she has managed to achieve this. She is incredible and i absolutely adore her. Laura Sengers I love you!
I just wanted to share this with you, mental health is often forgotten about. Help is available, medication does help and with good support over time these battles can be won.
“However difficult life may seem, there is always something you can do and succeed at”. A quote attributed to Stephen Hawking, who passed away today. But i think it also fits Bram.
Three years ago today Bram was diagnosed with his brain tumour. It is the day his and our lives changed forever. Ever since Bram has put on a fight to beat his horrible disease and overcome the disabilities he now has as a result of his illness and treatment. Bram has achieved an awful lot in his short life so far. His cancer has been in remission for nearly two and a half years and he is still improving every day.
Tomorrow Bram has his birthday, and will be 4 years old. I was talking to Max this morning and he said to me “i think Bram will stand when he is 4!” . I think Max is right and Bram will be able to stand unsupported this year. We are working hard with Bram to make this happen, and his physiotherapist is aiming to have him walk in his frame by the time he goes to school in September. It will be a big challenge, but for Bram nothing is impossible.
The last couple of years have been extremely stressful for us. But day by day Bram is improving, and we (and Bram’s medical team) are getting more and more hopeful that Bram will be a long term cancer survivor. Laura and I will do whatever is in our power to support Bram in his battle. He is our hero, our inspiration, and seeing on a daily basis how he lives his life, how determined he is to overcome it all, is what gives us the energy to keep going.
Bram, thank you for being our inspiration and keep the fight going. We are proud of you,