Maintenance

059The time had finally arrived that Poppy started the maintenance phase of her treatment. Maintenance is a pretty big deal, it’s the longest but most gentle phase of them all. If all goes to plan she’ll remain on this till the end of her treatment. So, for the next eighteen months or so we’re on the home stretch.

We were told at the hospital to think of Maintenance in terms of, that the cancer has been removed and this stage of treatment is to prevent it from coming back. When you think of it along those lines it’s easy to see why maintenance is a big deal for everyone on treatment and their families.

A wise oncology mum I’ve become friends with described this time as a chance to get some sense of your lives back. I can remember her telling us this and it felt so far off, yet I looked at her son who had a gorgeous head of hair and was running around full of beans and it gave me a glimmer of hope which I hadn’t experienced for a long while. I let myself imagine Poppy looking that well and dared to daydream about being able to make plans as a family once more.
If maintenance is a chance to get some semblance of your lives back, then I’m also seeing it as the beginning of having something to look forward to.
Being swept along in the tidal wave of diagnosis and the intensive stages of treatment, I spilt our time into manageable chunks in my mind. Getting through each procedure at first, then each day, each week and so on. If we got through a week or two without an admission we were doing well. But these days it feels as though we’ve had some kind of a reprieve, we’ve found ourselves doing nice things – I for one have found myself smiling again.
So here we are, a few weeks in and so far so good. Poppy’s still having treatment but it feels more than manageable. It’s Vincristine (chemotherapy) every four weeks, a thankfully small dose of steroids for 5 days a month, lumbar puncture every 3 months, and daily and weekly oral chemo at home. Infection is still a risk and her blood levels have taken a bit of a battering from the last intensive phase. Plus, it will take a little while to get the exact doses of her medication sorted in these early stages but, there a weeks at a time when we’re not due to be anywhere near a hospital. And that feels really good.

Part of our limited but new found freedom meant we were able to spend some time with my parents in my home town of Wolverhampton. Now, I appreciate that the Black Country may not be that exiting a prospect to many but a change of scene did wonders for us all. Obviously Poppy and Oscar enjoyed being spoilt rotten at nanny and grandpa’s, especially as they’d acquired a trampoline, swing and a slide in their garden. But I also realised that it was the first time I’d spent away from home with the children other than staying in hospital. It felt nice to doing normal things again.

The other important reason for our Midlands visit was to spend time with my big brother and sister in law before they emigrated for pastures new in Malaysia. I was worried about Poppy getting a temperature and us not being able to make it back to see them off, but luckily Poppy was on good form and the children got to spend some quality time with Uncle Matthew and Auntie Charmaine before they left. One of their many leaving do’s was a family party I was so happy we could attend as it was an opportunity to see my many aunties, uncles and cousins all of whom hadn’t been able to see Poppy since she got ill. Their support has meant a lot and I hoped seeing her in person, and how well she’s doing would allay their fears somewhat.

It was also quite a wrench saying goodbye to my brother and his lovely wife as their support since our first days in hospital has been incredible. So whilst it was sad to wave them off I tried to be philosophical and reminded myself that if this year has taught me anything it’s that life is too precious not to follow your dream. I wished them well and daydreamed about the potential nightmare of taking two small children on a long haul flight in a few years time…

I’ve mentioned before that this whole experience has opened my eyes to the many things I used to take for granted. And one of the biggest ways this has impacted on us all is the freedom to do as we please. To go out on a whim (well, with as much spontaneity as two small children allows) or to make plans for the future.

I never really stopped thinking about big milestones in Poppy’s life, but at the lowest points it was the simplest things which seemed like a huge challenge. Since her diagnosis there were skills which have had to be painstakingly relearned, and sometimes I wondered if she’d ever get there.
But, with each task remastered I’ve started to see aspects of my little warrior princess return which I honestly thought had gone for good.
It wasn’t just the starting to walk again or potty training for the umpteenth time, for me it was hearing her talk and sing again. Overhearing her often amusing imagination come into force when she’s playing and seeing her confidence around others grow has been a joy to behold. I’ve found myself with tears in my eyes on a few occasions as she performed some of her ‘interesting’ dance routines or declared the bed was a ‘bouncy castle’ and jumped around like a loon. The relief of her finally her wanting a bath- which she developed a strange aversion to as treatment started, has been huge. Simple things like going for a walk to find some puddles to jump in, are now daily routines I honestly believed had been lost forever.

Some days I can easily get choked up just thinking about how far she’s come. My tendency to over think things can sometimes trip me up, as I find myself wondering if we’re getting a little complacent, and maybe heading for a fall. But, again I’m trying to remain philosophical and appreciate the here and now. And, whilst it’s me who’s trying to retrain my thinking and get my head around our new life, Poppy continues to amaze me with her progress and determination. Each day I see a new version of our old Poppy come back, and with it I feel a love and admiration for her which grows by the day.

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3 thoughts on “Maintenance

  1. So lovely to hear Poppy is on the maintenance phase, it was inspiring reading your blog, best wishes for her future progress, regards Charlotte’s mum and Georgia’s Nan

  2. The only way is up, poppy is starting nursery and she’s going to grow so much with each day. You’ve come so far I’m so proud to be part of your lives xxx

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