How are you doing?

This is a question we are asked everyday, by everyone. It’s a reasonable enough – people are worried. They really do care about how Eleri is coping with treatment and how we are holding up as a family. The problem, in the last two weeks, has been that we haven’t really known how to answer that question – well actually that’s a bit of a lie, I have known exactly how to respond but saying cancer is a ‘f***ing c**t’ might be an inappropriate response to people who aren’t accustomed to my angry potty mouth. We want to say something reassuring to give people hope and good news. We haven’t been able to give people the good news that we and they crave because cancer doesn’t really care what you want – it carries on regardless of your hopes, wants and dreams.

The last two weeks have see significant changes to Eleri’s treatment plan. After being admitted with a painful infection, it became obvious that the discomfort wasn’t necessarily completely confined to inflammation of tissue or necrosis associated with the death of cancer cells after chemotherapy. Her leg, or more specifically the tumour seemed to be getting bigger. On Tuesday 24 April they performed an MRI under general aesthetic. Our worst fears were confirmed – the tumour had continued to grow, it was almost at her hip and it hadn’t responded to the first two drugs of the chemotherapy protocol. Osteosarcoma is an aggressive form of cancer, but no one could have predicted the rapid acceleration in growth of Eleri’s tumour. We were told that she needed surgical intervention, but the oncologists were not sure what that intervention might be; it become clear that she might be heading for amputation. It took two days for a decision to be made on the exact surgery and treatment needed.

I have found it almost impossible to express the depths of despair this news brought. The best I have is that it has been like an implosion inside my body. My chest and stomach physically hurt – sometimes it hurts so much I have to stifle a scream. I know this sounds dramatic, but it’s pretty accurate. The darkness at these times is all consuming. It’s heavy and it weighs you down. I can have bright moments where I think ‘I’ve got this…we can get her through this’, then the darkness hits again and the pressure in my chest resumes. When things are settled and she is having a good day, the anxiety subsides. However, when they told us Eleri might lose her leg, it all returned with a vengeance.

We spent two days worrying, researching and pricing up prosthetic limbs. We weren’t even sure, and still aren’t, if a child of Eleri’s age could have a full leg prosthesis. Thankfully, we don’t have to push that line of enquiry any further as the orthopaedic surgeons here at Oxford and, as it turns out, at a national level were satisfied that Eleri’s tumour could be removed and a temporary ‘spacer’ inserted. This ‘spacer’ would stay in place until her endoprosthesis has been made and she is ready for the next stage of surgery. After a two week healing period, she would resume chemotherapy. Relief and elation were the emotions of the hour. Rob was so happy that he lost all control of his somewhat flimsy filter and told a leading oncologist and outstanding consultant orthopaedic surgeon that he ‘wished he had tired harder at school’ so he could be like them and save lives. Laugher ensued from all parties, it was the lightener we needed.

Fast forward to Monday and Eleri had to endure four hours of surgery with hours ether side of preparation and recovery. Before the surgeons could remove her tumour they had to cut and clip the blood supply that it attracted to itself, separate the healthy tissue, ensure that ‘neurovascular bundle’ was preserved and, only then, remove the cancerous bone. At 16.00 yesterday we received the wonderful news that she performed exactly as she should during the surgery and they were able to remove all of the tumour. We couldn’t have asked for anymore. She is recovering in HDU with a view to move to a surgical ward when she no longer needs constant monitoring. Now we just wait and hope she heals well enough to continue chemotherapy.

After a long winded explanation to the initial question of ‘how are you all doing?’ the answer is, we are doing ok. Better than that, Eleri is doing ok. Yesterday and today have been good days – she no longer has a massive tumour poisoning her body. She is tired, but isn’t in as much pain. However, if we have learned anything, it is that we don’t know what tomorrow will bring. We just have to keep riding the train and hope it takes us to our desired destination.