Bring on the Maintenance!
Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.
On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan. He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before. The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.
Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells. Some of the chemotherapy that George will receive during this phase will be administered orally by us at home. He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.
It doesn’t reach the nuts!
The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts! So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital. Relapse in boys testes is more common than anywhere else.
Nor does it reach the brain!
The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy. This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach. He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.
So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely. Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.
Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now. The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner. Cliche I know but it’s never meant more.
I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives. There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible. I’m not usually a fan of “normal” but it’s sounding pretty good right now.
Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.
Maintenance Day 1 – LegoLand Windsor
So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor! you all know what a fan of Lego our Georgie is, so he was in his element.
We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride. It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.
The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind! It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.
George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides. Oliver and Harriet loved it!
Day 2 – Family stay
We also had the pleasure of staying with family on the way there and back. Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!
We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!? could things get any better for Day 2 of Maintenance! George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc. and low and behold since we’ve been home he’s been chatting all about it.
Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops. We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub. The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.
We’re looking forward to the rest of summer 🙂