I've raised £1000 to support Genevieve’s Journey
Organised by Katy Armstrong
Story
If you’ve just joined us on this journey then this is our story so far....
On 27th August after trip to the Drs with what we thought was the tail end of a virus, we were whisked off to Leeds Children’s Hospital where Genevieve (Evie) was diagnosed with Leukaemia. Within 24 hours we had a full diagnosis and had started on an intensive course of chemotherapy.
Genevieve has a rare type called Acute Myeloid Leukaemia with around only 100 children diagnosed in the UK each year. It is a type of cancer that affects blood producing myeloid cells in the bone marrow. ‘Acute’ means it develops quickly hence why we had no idea what was coming! AML is treated with an intense course of chemotherapy that usually takes around six months. The specific treatment can vary depending on their individual condition and general health. There are three risk groups and your risk group can change depending on how their treatment is working. Due to the impact it has on her immune system where she could need urgent treatment for infections, and the need for regular blood and platelet transfusions she will remain in hospital for the majority of her treatment with a few days at home in between each course.
The first night we arrived at LGI we were given a bag by the staff from a charity called Milly’s Smiles. This bag contained lots of invaluable things vital in those first few days in hospital. Some people quite simply turn up in the clothes on their back, to them this bag is the first bit of light they see in an otherwise dark and scary time! The thought and care put into those bags meant so much to us, and even more so that Milly’s Smiles was set up in memory of another little girl with AML. We are so grateful to our friends and families to have been able to raise £1000 to donate to help other families in the same position.
The time we have spent at LGI on the Children’s Cancer Ward has been made bearable by the wonderful support from the staff and a local charity called Candlelighters. They fund a number of roles to support families during their stay, from a magical dinner lady Elaine who can rustle up whatever Evies tastebuds demand, to the play team who give us parents a much needed break and help the children understand their treatment in a way they can engage. Candlelighters also invest in a lot of equipment on the ward to make life as ‘normal’ as possible for the children. Read more about how they help us here....
https://www.candlelighters.org.uk/home/on-the-wards/
Evie has been able to carry on with her school work thanks to the hospital teachers. She was devastated when she realised she wouldnt be returning to school in September with her friends after lockdown, so to see her continuing to learn and develop has been a huge comfort to us as parents. The teachers often bring reading books for Evie, some of which are hers to keep thanks to the wonderful charity Read for Good, who provide beautiful books to children staying in hospital. Here is more about their hospital programme....
https://readforgood.org/our-hospital-programme/
After completing our initial treatment plan of four rounds of chemotherapy we had hoped were in the clear, however one of the more in depth tests indicated there were still minute traces of the cancer in Evie's bone marrow. As a result she will be undergoing a bone marrow/stem cell transplant in April 2021. This will involve an intense round of chemotherapy followed by the transplant taking approximately 8 weeks. She will remain in isolation for the duration of the treatment due to the high risk of infection and complications. We hope to raise further funds to help with equipment that can make this time more bearable for both ourselves and future families who have to endure this treatment.
We have put a lot of time and thought into how we can fundraise to help those who have genuinely helped us, and we are also conscious that we have such a wide network of friends, family and well wishers who want to help both us, Genevieve and those in a similar situation.
Through this page we hope to raise both awareness and money to support these charities. If you have read this far (thank you!) and donating money isn’t for you, please consider donating some blood, platelets or joining the bone marrow donor register and you can help others in a way that we can’t thank you enough!
