Out and about

Dear friends,Bram has started his third week of radiotherapy. It is going well so far. Hardly any side effects. Just a bit of redness in his neck. And Bram is definitely a lot more tired. He is handling his daily general anaesthetics well. His weekday are very busy. Treatment in the morning, than recovery and sleep and in the afternoon physiotherapy, speech and language therapy and play specialist all there for Bram.

With just under four weeks of treatment left and Bram improving quickly the teams are starting to make their plans to get Bram…..home. This will be some time away still but the topic finally gets discussed. We are actively involved in this and are doing our training, and will get our house ready.

Last weekend we finished our training regarding bram’s tracheostomy. With this finished and Bram finally considered stable the medical team gave us the all clear to take Bram out of hospital. So on saturday we went out for a walk with the four of us. No doctors, no nurses. Just us. An amazing and emotional experience.

On sunday we went out for a family day out with the four of us. The hospital had bought us tickets to take Bram and Max to London Zoo. Fully packed with all Bram’s medical equipment we spend six hours outside hospital. It felt so normal. Finally a family again. It lifted everyone’s spirits. Bram and Max really enjoyed the day out and each others presence. I am sure you can imagine the smile Laura and I had on our face that day.

Bram’s fight will continue, we are feeling hopeful and can finally start to believe that we can take him home soon. Only in months and years to come we will get the answer if Bram achieves a cure. But for now he has made a few important steps.

Love,

Jeroen, Laura, Max and Bram

   
    
    
   

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