I often wonder how Livia is doing and really appreciate the updates, what an incredible kid she is!
Best wishes and fingers crossed for an all clear in early May.
It's been a while so I thought I would post an update on where we are.
Livia completed her Chemo last Friday, which was the 24th session, the last 18 of which were over 3 days each, 6 of which were overnight stays. Hardcore stuff.
She's had overall about 70 nights in hospital out of about 180 days of treatment overall, with transfusions, scans, anti-biotics etc. It's crazy to think back to the 21st March last year when it all happened.
Anyway, she is well and it has gone great overall, seemingly as well as it could have done in terms of the treatment. There's obviously been loads that I can't talk about in a post in terms of sickness and our lives as a family dealing with it.
The future is uncertain - she has an MRI in 2 weeks with the results in early May. She still has her hickman port in etc.
I can't really describe how it has been and the small details that you dont think about, like hair and fitting in, people looking at her, work wondering if we're coping and friends not really being friends and going out trying to pass the time and constantly being on the edge all the time, never knowing what is really going on, always fearing for the worst and picturing the talks with consultants, what would happen if if if if and family and ####ing cancer, it's everywhere, stand up to cancer this, cancer that - we know we're being selfish and that message needs to go out, but when you have an 8 year old with cancer and all of a sudden it comes on the TV that poor Leah, 8, didn't make it so please donate..... and Liv goes why didn't she make it? How do you explain that to a clever kid?
....well, you would never understand unless you have been in it and I am glad you don't because it would only make your life sadder to realise it. To those that have been through it you have my respect because it is the hardest thing I can imagine really and I had no idea how much cancer affects the world and everyone in it. It is everywhere.
Well that was intense.
So where we are is that Liv is doing great and the sword of Damocles will be released in early may with either an all clear or some finding we don't want to be found. Other than the first few months of it all, I think this will be the hardest period. The waiting....is our life ####ed permanently, is Liv going to be OK or...
They told us, with her situation, she had about a 65% chance of living 5 years - near the start. I think that a good few % points of that is down to the operations and potential infections, which she has done amazing at, so we must be in a good place, all things considered.
She is happy, put loads of weight on and we're planning on putting her back in school in a could of weeks. She's behind with school work, but we've had tutors and stuff so not that far behind really. We have a party with all her classmates coming and a bouncy castle and face painting and all that stuff (Mya, her 11 year old sister has made a party playlist so that should be interesting) so we are doing good at the moment. Nothing we can do but wait. And despite the reading of this post, we are really positive - we do believe we have done everything we could have done. No stone left unturned and all that. Lap of the gods now and if the worst does happen we move onto the next thing and then the next until we beat this shit.
Sorry for the long post, much love to you all, you've been so supportive! Will let you know early May. Cross everything for us.