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Our angel got her wings at 3.20 this morning. Her suffering is over. Louis and I were both holding her hands and nothing was left unsaid or undone. We are so proud of how she dealt with her illness and proud that she has been part of hopefully finding a cure for this horrible disease. All her important people had been with her a few hours earlier at her birthday and she was ready to go and fly on her butterfly. She’s going to send us rainbows and butterflies to let us know she’s ok. I can’t believe she’s gone. I just want to keep hold of her and never let her go but I must now cherish the memories of our sweet girl. Rest in Peace my darling.
It is with a very heavy heart that I write this post. Yesterday our glimmer of hope that somehow Daisy would be cured was extinguished. Daisy had an emergency MRI as her symptoms had been getting steadily worse over the past couple of weeks. The results were devastating. The tumour has not broken down further as we had hoped and there is no way of aspirating it. What’s more there are signs that the tumour has seeded itself in other parts of her brain. Prof Gill and the team in Bristol have seen the scan and agreed that there is no more treatment that can help her. We are trying to come to terms with this. It means that over the next few weeks our darling girl will continue to deteriorate. She is already pretty much paralysed, her vision is very poor, her swallowing is getting very difficult and she’s getting muscle pains from not being able to move. Most recently her ability to speak has almost gone. It’s just heartbreaking to try and communicate with her. She tries to talk and sometimes we can’t understand her and she gets so frustrated. Her world has become very small but it is full of love and lots of smiles and laughs and we are doing everything we can to make sure her remaining time is as good as it possibly can be. She’s so brave and calm and unworried and we can still all enjoy time together. Although it seems the treatment Daisy has received in Bristol is not going to save her, we are so proud of her to have been part of this pioneering process. They have learned so much from her that will help the next children who come along. They have perfected their technique for getting the drugs in, now they need the perfect drug. Prof Gill is so close. One day we hope there will be a cure for DIPG, that children won’t have to suffer like this and parents , families and friends won’t have to go through the agony that we are. Please continue to fundraise and raise awareness as Prof Gill needs to take this to clinical trial and try new drugs
Thank you everyone for your continuing love and support. We need it more than ever now. So very very sad…
Well it’s been a week since the last infusion and so far so good! Daisy’s been pretty stable even though we’ve been reducing the steroids. We have been out in the garden today and had a good laugh with her. Having said that, she is still very weak and unable to walk, feed herself or use her arms for anything other than raising her bunny to her face, her vision is still not great and the docs have warned that she may get worse in the next couple of weeks while the chemo gets to work. We hope and pray that the tumour is breaking down further and that they can aspirate it next time we are in Bristol. In the meantime , we are looking at doing some national media campaigning to promote awareness of DIPG and raise funds for Prof Gill. To that end, does anyone have any contacts in the celebrity world or TV/media who might be willing to help us? Thank you all for your continued support!!