More progress, but also a hernia…

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.

Jeroen, Laura, Max and Bram!


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