surgery date...

Long, long overdue I know.... where to begin.. Lola spiked a temperature the weekend before last and ended up with a short spell in Ipswich hospital. One bag of platelets, two bags of blood and 48 hours of IV anti-biotics later and she was ready to roll, BUT she needed a kidney filtration test and echocardiogram first, so she was contained for another day and almost clawing the walls. Freedom beckoned at 230pm on Tuesday and Lola had a fantastic week, going from strength to strength as her bone marrow recovered from the chemo. Its amazing to see her with colour and energy, skipping around the kitchen and helping herself to snacks from the cupboard. Despite being ng - free for almost a month, her weight has remained a stable 30kg and she is eating more than I have seen for 5 months. She's been at school almost every day for a week and is even staying for school lunch!

Surgery.... that's been a little more complicated and probably the reason I haven't updated for a while. Several weeks ago we were given the 8th, 11th or 12th March as surgery dates but told confirmation would not be given of the exact date until Weds or Thurs of last week. I spoke to the Macmillan Nurse and Lola was all revved up and ready to face the surgeon. Wednesday came and went... no news. Patient as I am (??) I managed to wait until 10am on Thurs before calling Birmingham, only to be told that the order for Lola's prosthetic arm was still sitting on the surgeon's desk waiting to be signed. This meant that surgery wouldn't take place this week as the limb takes 7 to 10 days to make. I persistently phoned for updates but was not able to speak to the surgeon or Lola's oncologist. Eventually, Amos Burke, her Addenbrookes oncologist, called me back and was hugely upset about the delay but unable to offer a solution.

By yesterday morning I was turning cart-wheels with frustration, called Birmingham for an update and was told, to my horror, that the form was still unsigned and the prosthesis remained unordered. Worse still, when Amos called me back, he was clearly very upset and reluctantly broke the news to me that Lola would not have surgery for another 3 weeks as the surgeon was going on holiday, that she would require an additional 4 day stint of chemo to cover the delay period and that, having had extra chemo, she would have to be withdrawn from the Euro-Ewing 99 research programme she has been a part of. In short, despite having had stem cells harvested in preparation for a mega-chemo if the histology is not good, she would no longer be eligible for the treatment!

I can't begin to explain how I felt about this information. So far, despite the harrowing nature of the treatment and the sadness of seeing my child in discomfort, distress, lose weight, hair and confidence, I have always felt reassured that she is getting the best possible treatment available to her and therefore, has the best possible chance of a full recovery. To know that, through someone's carelessness, she would need to go through an unnecessary dose of toxic medicine which her body is finding it increasingly hard to recover from and then face the possibility that her chance to receive potentially life-saving treatment was now denied to her, was heart-breaking, frightening and infuriating in equal measure.

Having cried, stomped and turned in circles of ever-increasing frustration, I knew I needed to persist until we had an outcome. I wasn't prepared to accept that Lola was going to be removed from the research trial. The hardest thing was knowing who to contact and where to find them. Leaving messages and waiting for the phone to ring can be the most agonising time. I will never know whether a bit of family string-pulling influenced the situation, or my mention of 'medical negligence', but I received a phone call yesterday afternoon to say that engineers were building the prosthesis in Stanmore at that very moment, that it was due to be couriered to Birmingham and that Lola would be added to Mr Abudu's list on Friday afternoon! I think I ran the full range of emotions yesterday afternoon... thanks Joe for putting up with a wet shoulder, for forcing me to write it all down and for just sitting it out with an inexhaustible supply of love and patience xx

So.....I speedily shopped for hoodies and books this morning, packed 4 bags and put the contents of my fridge into the bin! The girls (excitedly!) told their teachers and collected some homework. Tomorrow, bright and early, Lola, Nancy, Greta and I head off to Cadbury World (thanks Elaine for that genius idea 5 months ago!). We meet Nanny and Grandpa, eat too much chocolate and then throw up in the car on the way back to Gloucester for the night. On Thursday morning, Lola and I will be in Birmingham Royal Orthopaedic for 830am, book in, get MRI scanned (again!) and meet the surgeon. We'll explore Ward 6, unpack our ENORMOUS bags and bide our time until she's taken to theatre sometime on Friday afternoon. My heart is beating hard but she is so ready........