Treatment for Jordan to help her live well
Donation protected
My daughter Jordan has an inoperable brain tumour. She is 26 The tumour has taken most of her sight, she only has 20% in one eye now. She needs a wheelchair as walking tires her out and get out of breath. She had a biopsy in July 2021. Which unfortunately lead to a stroke at the same time. Radiotherapy and chemotherapy which unfortunately this made her to ill to continue with chemotherapy. She needed blood transfusions and became very weak. In November had back to back seizures and was in hospital again. She has now also been diagnosed with epilepsy. The consultant has found a treatment that might help get her off the steroids as these are causing problems with her mobility due to the increased weight she has gain as a side effect. The treatment Avastin is not licensed for brain tumours or funded in the NHS. But there is evidence it works on helping swelling on the brain which is one of the complications Jordan has. she had two rounds of the treatment last year and get treatment, is helping her the swelling is less and is now in the lowers dose of steroids hopefully she can improve. This is a vital treatment for her and our only option. Jordan had two rounds of the treatment last year and these have appeared to work as the swelling on and around her brain has reduced. Which is positive sign. She continues to fight. Another complication is that she now has lymphoedema in her right leg which also having an effect on her mobility. We are trying to keep her mobile but it’s hard to keep her mobility as she is struggling daily. We are hoping that the better weather will help get her out in the fresh air and help with her mobility.
I am also signed up to do an ultra marathon in May to help raise funds for treatment this year. We saw consultant at the end of February 2024 her recent MRI shows the treatment is continuing to work well. We discussed symptoms Jordan’s is experiencing, such as anger, and sometimes low mood. Which we now have a plan for her.
We now have another amazing Bill Hodgson doing a 226kg 10,000 tyre flip this is an amazing challenge which will really take some completion but we are sure he will do it. Please support the challenges planned
We now have another amazing Bill Hodgson doing a 226kg 10,000 tyre flip this is an amazing challenge which will really take some completion but we are sure he will do it. Please support the challenges planned
Organizer
Sarah Copestake
Organizer
England
