Our thoughtful, kind-hearted son Kai has always been a model son. He helps me around the house, he plays really nicely with his younger brother and sister and comes up with detailed imaginary games for them. He's a gentle soul who wouldn't hurt a fly, he hasn't reached that moody, teenage stage yet where they just want to play computer games and is still happy making structures with his magnet tiles (his teachers all say he will be an engineer like he his dad). He is fascinated by nature and loves to grow seeds and plants and nurture them. He will take a seed from a pepper we've eaten and grow a whole new pepper plant from it, he treats his seedlings like pets and takes them everywhere with him. Sadly Kai fell ill one Saturday two weeks ago, complaining of headaches and dizziness. Initially, we thought he had an ear infection and took him to the walk in centre however his symptoms continued and he started to vomit on the Thursday becoming very sleepy. We took him back to the GP on the Friday who couldn't find anything wrong with him however by the next morning he was so drowsy he could hardly form a sentence. Becoming increasingly concerned we took him to A&E where the doctor shared our concerns and admitted him for further investigations.
An urgent CT scan was performed which devastatingly found a sizeable mass on Kai's lower right brain region. At first we clung onto the hope that this could be a cyst caused by infection but this was soon ruled out after blood tests found no raised infection markers. He was quickly transferred to John Radcliffe hospital where they performed an urgent MRI. At 2.30 am we got the shocking news that Kai had not one but two brain tumours (a smaller mass was picked up in the pineal gland).
Things all happened very quickly after this and the next morning Kai was taken down for brain surgery to attempt to remove the larger tumour. After 9 long agonising hours, we finally got the call that Kai was in recovery and the surgery had gone well. Kai amazed us with how well he coped with his operation and within days he was up and walking around with a smile on his face. We were able to bring Kai home to continue his recovery surrounded by his loving family but unfortunately, we still had more bad news to come. We were informed that the biopsy results found that Kai has a very rare germ cell tumour (one in a million) which has already spread from the pineal gland to the Cerebellum. This and the massively raised AFP marker suggest that we are dealing with a more aggressive cancer that is more difficult to treat and more likely to return after treatment. Because of this, the treatment will need to be aggressive (4 months of 3 different Chemotherapy drugs followed by 2 months of radiotherapy to the whole brain and spine.
The doctors have given Kai a 50/50 chance of survival and have told us that the treatment will have serious side effects including the growth of his spine permanently stopping, learning difficulties, hearing and sight damage/loss and not being able to have children of his own.
Although we have been dealt with some very unfortunate circumstances and the future looked very bleak for us initially we have been encouraged to try to stay positive and have decided to make the most of the time we have left with Kai for however long that may be. We hope to raise enough funds to allow Kai to have some amazing experiences and squeeze in as much joy as we can into his life and make as many happy memories with him as we can. He dreams of being able to plant more trees around the world and his ultimate dream would be to plant trees in the Amazon rainforest and design buildings that are at one with nature.
We are determined to do everything in our power to give Kai the best chance of surviving this awful disease, we have total faith in the NHS and remain positive that the treatment available to us in the UK will be successful. However, there are no lengths we wouldn't go to if needed and if there are any clinical trials or alternative treatments anywhere in the world we will not rest until we have tried them. Kai is a very special boy and this world needs him as much as we do.
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