We’ve been back from New York now for 6 weeks and it’s starting to feel like life is returning to some semblance of normality after the last chaotic 4 months.
Sophie has recovered fully both physically and mentally from the operations. One of her stitches has become a little infected so she’s on antibiotics but apart from that her scars have healed nicely. She’s also grown up a lot since we’ve been back. I think that some of the stress around her relapse and the chaotic fundraising unfortunately had rubbed off on her but she now seems really settled and a lot more confident again. She talking really well and just seems to understand a lot more of what is going on in life and and why things need to happen. She’s being lovely with James at the moment too and really likes to look after him and play with him, she has also taken to trying to ride him like a horse and shouting “Giddyup horsey!” – hmmm, not what baby brothers are for!
We’ve had lots of good test results since we’ve returned that have proved that the surgery has done its job! Firstly Sophie’s tumour marker (AFP) has dropped to well within normal range. Anything below 10 is normal and Sophie’s has dropped to 2!! It’s now bouncing around a bit and has risen to 4 but this is to be expected because the chemo upsets her tummy and causes the liver to work a bit harder so causes it to produce more AFP. Also, when the results are so low there is always a little room for discrepancies so I’m trying not to worry that it’s gone up slightly but of course, I’d like it to be as low as possible. Sophie also had a CT scan this week and it came back clear – no lung metastases could be seen which is incredible! The surgery has had the best result it possibly could and has definitively removed the lung metastases. This has beyond all doubt given Sophie her best chance of beating this so we are thrilled.
Life has also taken on a bit more of a settled routine for us all and is being based around Sophie’s chemo cycle. Each cycle lasts 3 weeks so we spend Monday to Friday of the first week at the Marsden for chemo, we go back to the Marsden the Monday of the second week for the final chemo and to start a drug to stimulate Sophie’s immune system and she then continues to have this drug for the rest of the second week so the community nurses come to our house each day and we go to our local hospital at the weekend. We then have the third week free of hospitals. Sophie’s had two cycles since we’ve been home and has tolerated both well. She had been quite poorly with the cycles before surgery but that could also have been linked to her being unsettled and stressed. I’m probably cursing us now and she’ll be ill during the next cycle!
We don’t know yet how many further cycles of chemo she’ll need. As her cancer is very rare and it’s even rarer for it to spread there is no set protocol for treating relapses in the lungs. Sophie’s current chemo isn’t as toxic as her previous chemo and she could stay on it for up to two years! Our Oncologist is of the view that as she relapsed so quickly and aggressively we should be cautious and so we continue with the chemo for as long as she is tolerating it well. We are meeting with the Oncologist to discuss how Sophie is before each cycle but she could still be having chemo for quite some time. This is a tough one for us as a family because we’d like Sophie (and us!) to be able to lead more of a normal life but we have to be sensible and keep on with the treatment that’s going to give her the best possible chance of staying in remission this time.
So we have a little way to go yet but are feeling so much more positive and relieved that Sophie has been able to have the surgery. Thank you to you all for helping this happen, your support has been truly amazing, we can’t wait to show Sophie all of the amazing messages of support that she has received.
A very special thank you to Mike & everyone at Kids n’ Cancer and our incredible fundraising team who gave up a large part of their lives in June and July to achieve what seemed impossible, raising all the money needed to get Sophie her best chance of survival. Thank you also to Jenni Marsh for putting Sophie’s story into the newspapers and to David Fenton from South Today for covering Sophie’s story so kindly. We’re so lucky to have you all in our lives and will be indebted to you forever.
Ruth and Andrew