I wanted to take a moment and explain a bit more about osteosarcoma, Eleri’s future and the support she may need. I wrote this post last week and just haven’t had time proof read it and publish. Her treatment has deviated a little since then, but I will explain all that in another blog. Before that, we felt that we needed to say thank you for all the love and support we have already received.
Primary bone cancer is rare, it’s even rarer in children of Eleri’s age. Between 25-30 people a year are diagnosed with this disease and the majority of these are between the age of 10-25. The odds that any child would develop childhood cancer are rare, the odds of Eleri having osteosarcoma are almost non existent. As this cancer is so rare, research and trials are few and far between, therefore treatment for osteosarcoma has remained relatively unchanged for decades. Survival rates can be anything from 20-70 percent depending on when someone is diagnosed, if there are any secondary cancers and how an individual responds to treatment. Eleri will receive chemotherapy, an operation to remove the cancer and then more chemotherapy.
Something that has improved significantly in recent years is the treatment of the limb that is diseased. Previously, amputation was the only way to rid the body of cancer – thankfully there are other options today. Most people receive limb sparing surgery that replaces the bone with a graft from another part of the body or an ‘endoprosthesis’; we like to call this a bionic bone. This ‘bone’ is fitted with a mechanism that allows it to be adjusted as the child grows. We are hoping that Eleri will receive limb sparing surgery. However, 15 percent of patients with osteosarcoma still have to have the limb amputated. We wait with baited breath to see if the initial stages of chemotherapy treat the cancer effectively and allow the surgeons to save her leg.
As you can see, Eleri’s future remains unclear. We are unsure on what the outcome of surgery may be and how this will impact her life. What we do know is that she will need some support with equipment and house adaptations. With that in mind, a few weeks ago my sister started a crowd funding page. It wasn’t something that I had thought about or wanted to do. However, she and my cousin Claire, persuaded me otherwise and fundraising began. The response has been phenomenal, I never expected anyone to donate, let alone start fundraising for it. We hope to put some of the money towards anything that will make Eleri’s life easier and to the charities that have supported us. I have included links to them below. Please, if you can, take the time to familiarise yourself with them. Should you ever want to fundraise, they are all very very worthwhile charities.
The work charities do and the support they give is unparalleled. When you put that together with the generosity of our community, friends and family, I have learned that the natural human condition is one of love and kindness. People want to help and be helped. We will never be able to thank everybody enough for their love and support, it means so much. To love and be loved at this time is truly wonderful. Eleri’s diagnosis continues to be a life changing experience in many ways. Whatever the outcome may be, with the support of our friends, family, and these charities it will mould our lives into something new. It will be new and different, but not worse – never worse.
Macmillan Cancer Support
Royal Airforce Benevolent Fund
Fairford Town Charity
Oxford Children’s Hospital Charitable Trust
Eleri’s Go Fund Me page