Dear friends,Yesterday Laura and I met up with the oncologists from Great Ormond Street Hospital (GOSH) and the radiation consultants from University College of London Hospital (UCLH). They explained us the plans for Bram. Radiation is the best option to cure Bram and time is of the essence. Therefore they strongly recommend IMRT (intensity modulated… Read More »
Dear friends,Bram is doing amazingly well at the moment. Only six days since his tumour was removed in a 5.5 hour operation. Bram spend one night on intensive care. The next morning he was taken off the ventilator and that went well. This was one of our big worries as it took six weeks last… Read More »
Dear friends, Bram is back on intensive care. His surgery was successful, the surgeon was able to remove all of the tumour he thinks. An MRI scan in a couple of days will give a final result. We have visited Bram already, he is awake at times and moving all limbs. Currently still ventilated but… Read More »
Dear friends, Unfortunately I do have to share very bad news again. Bram has detioriarated over the weekend after his third round of chemo. He was having more and more issues with breathing and was breath holding a lot. An MRI scan was done this morning and it showed that the tumour has grown quickly.… Read More »
Dear friends, We have been in Great Ormond Street Hospital for nearly three weeks now. Bram had his second round of chemo last Friday. So far chemo has been kind to him. No big side effects at the moment. Just sensitive skin. He is a very happy boy lately. Smiling a lot, chatting (he calls… Read More »
Dear friends, Another roller coaster of a week. On Monday Bram had a final CT scan of his head to check if his brain fluids had returned to normal. They had, but the scan also showed that the cyst in his head was growing quickly. It now measured 4 by 5 cm. This growth needed… Read More »
Dear friends, Another week has passed since our last update, and again a week with ups and downs. On monday Bram had his 9th (and final) round of surgery before chemotherapy. This one lasted just over 5 hours and the surgeon fixed Bram’s scrotal hernia, inserted a hickman line (an IV line to be used… Read More »
Dear friends, Bram and us have had an extremely tough week. On Monday Bram was planned for surgery. This was cancelled at the last moment because his brain fluids readings were unsatisfactory. Also that day Bram started to experience breathing difficulties. This is most likely caused by scar tissue growing in his throat/windpipe in combination… Read More »
Dear friends, Bram has had a good week. After his emergency surgery last week he has made good progress. His external drain is working well and the plan is to have more surgery on monday to install an internal VP shunt(drain) again. This will be his 3rd, so hopefully third time lucky. The first couple… Read More »
Dear friends, In my last post I asked the question how much more bad luck Bram could have. He found out the hard way unfortunately over the last couple of days…. Since our last post Bram made really good progress, so much so that Bram finally got moved from High Dependancy Unit to a normal… Read More »