Shielding, MRI and growth hormones

Dear friends,

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!

Love,
Team Bram
Jeroen, Laura, Max, Bram & Anoek

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