An update and an early days catch up

I don’t quite know where to start today…it’s been a while since I sat down to write, so I’ll start typing and see where we end up! The first week of Delayed Intensification has gone better than expected. By which I mean that my expectations of this phase of treatment were so low that anything above that was set to be a bonus.

Poppy has tolerated the first new drug on her schedule well and the anti-sickness she’s receiving alongside it is managing to keep things at bay on that front. The steroids have reared their ugly head again with a stronger dose than ever before and Poppy’s extremely tired as a result. Her body is sore all over, and she’s choosing to be carried from place to place again rather than walking. The early part of this week was spent carrying her between the sofa, her bed and a heavily cushioned seat at our dining table. The effects of the steroids appeared so quickly that it took us all a day or so to adjust to how best to deal with them this time. I thought we’d learned how to cope with them, but Poppy’s extended period of wellness meant that the last occasion seemed a distant dream. Steroids week is all about survival. Taking each day as it comes, and essentially allowing Poppy to do whatever she needs to do to get through it. Having faced it so many times before, we now know that we’ll get our Poppy back as soon as the course has finished, so it’s best just to ride it out and not worry about the amount of TV being watched or beige foods being consumed!

I should clarify that by new drug on her schedule, I mean one which Poppy hasn’t taken before, rather than a new drug per se. The standard treatment for ALL has been thoroughly tried and tested. So much so that the current clinical research trial is actually looking at whether it’s possible to reduce the length of treatment in certain low-risk cases and still achieve the same outcomes.

We were asked to take part in the UKALL 2011 trial on the same day Poppy was diagnosed. We were given the information and the opportunity to ask questions, as well as the knowledge that we could change our minds at any time. For us, it was a gut instinct. By taking part, the information gathered from Poppy throughout her course of treatment could contribute to kinder treatment for other children in the future. Not just that, but it could actually help to make ALL completely preventable and therefore save any other family going through what we are. We’ve always been upfront and honest with Poppy and she’s aware on some level that her information is being shared. Her response to learning that she was helping other children with Leukaemia was that “I’m proud of myself”. Needless to say, we’re incredibly proud of her too. (And you Daisy – we talk about Poppy a lot here, but you’re always in our minds and heart too, and we’re very proud of you in your own right)

To begin with, the treatment schedule was exactly the same, whether taking part in the trial or not. There would come a point when a randomisation would take place, offering two different pathways for each phase of Maintenance, resulting in four possible pathways overall. If you recall, Day 29 was an important stage of treatment as this defined the next phase and was the first real sense we had of how well Poppy was responding to the treatment so far. As the Consolidation phase on Regimen A lasted three weeks (rather than a potential 10 weeks on Regimen C) we had 21 days to decide whether to continue with the trial and receive a randomised pathway for the next phase.

I took a little longer to decide on this stage. It was one thing to share information, but quite another to take a chance on a different pathway to the standard treatment in our country. ALL is treated slightly differently across the world, usually using the same array of drugs but arranged in a slightly different way. The research and thinking is shared amongst the Leukaemia specialists across the world, and it’s a pleasing thought to think of them all sharing this information and working together to find the best possible treatment.

One possible pathway would have involved a high level of hospital admissions early on, but no steroids throughout the rest of the treatment. It was certainly appealing and there was a stage during my thought process when I was really hoping we would be randomised to this pathway. I agonised over my decision for about a week, with my heart still wanting to help other families in the future,  but my head worrying that the pathway we were on would later be found to be less successful than another. There is of course a code of ethics applied to each clinical trial and the treatment offered would always be the best treatment available, or a newer treatment which could be considered better overall once trialled effectively and proven to be the case.

I went with my heart. Graham drove to Bristol and back to sign the forms in person, only to find out that we had been randomised to the standard treatment anyway! It was a strange anti-climax to a decision I’d taken time to arrive at, but also reassuring to know that we are still taking part in the trial, whilst also benefiting from the years of experience which have gone into developing the current standard treatment. Fifty years ago, hearing your child had Leukaemia was a very different story with a very different outcome to the one we’re afforded today. That’s only been made possible by the advances in treatment established from the clinical research trials which many children have taken part in over the years which have followed.

Treatment will no doubt move on again in the future. The medical world is always evolving, learning and trying new things. A paper was funded by Bloodwise and published several months ago, which highlighted the latest leaps in ALL research. Whilst I am delighted that research is moving on to a point where making Leukaemia preventable is being discussed as a likelihood, a part of me is desperately sad that we couldn’t prevent this happening to Poppy.

At the time, I also found it disconcerting having Leukaemia discussed in the open. It was at a point when cancer seemed to be following us everywhere and each stark reminder of it was like another punch to the stomach. It’s still hard to explain how it made me feel, but in some ways it was how I imagine it to be if you’re in a crowded place and everyone turns around to look at and whisper about you. Despite knowing otherwise, it felt like Leukaemia was only happening to us in that moment. It came at a point when I wasn’t ready to absorb any other sadness, and hearing it talked about so openly was really difficult as I felt like I had no control over the discussion. It only lasted a few days before another news story took it’s place but in that moment I was really struggling and found I couldn’t articulate how it made me feel. It came at the same point as I was filling out the claim forms for the DLA, when I found myself in a very dark place.

Looking back now, I can see that the beginning of the Interim Maintenance phase was the first opportunity we really had to reflect on our situation so far. Things always seem clearer when you step back to evaluate, and during the intensive first few months I didn’t have the time or energy to dwell on anything or even process properly what had happened to our family. Everything was such a whirlwind and it was only when the hospital visits slowed down a bit that I struggled the most with my thoughts and how to adapt our life to this strange new world we’d landed in.

I think that part is the hardest to make sense of and explain to others. People naturally assume that when Poppy is well,  that is when we are all at our strongest. Strangely, that’s not always the case. Often my lowest moments come when Poppy has bounced back from a tough week and I’ve had the chance to process the days gone past and appreciate how far she has come and how much she has endured to be well again. There aren’t many people who see Poppy on her lowest days. We stay close to home (or hospital) and ride those days out on the sofa, cuddling close and concentrating on Poppy’s every need. So when we do venture out and see people on a good day, it feels like we’re not telling the whole story. This is now, but not where we’ve been and how far we’ve come and sometimes for whatever reason, I feel a compelling need for that to be recognised. I don’t know why. It’s a strange mixture of emotions, churning up in my stomach and I feel distracted and unable to pinpoint exactly what has made me feel that way.

We’re right back in the thick of it again now, which explains the gap between posts. I’m so drained from the long hospital days and round the clock care Poppy requires during heavy phases of treatment, that gathering any sensible thoughts in the evening or writing anything intelligible is completely beyond me. The latest course of steroids finished mid week, and Poppy was reassuringly brighter as the week went on, despite attending hospital for two chemotherapy infusions. I’ve brightened along with her and the mental cloud which descends during Poppy’s intensive treatment has lifted enough for me to gather and share these thoughts. I started this post by saying I wasn’t sure where it would end up. That’s often when thoughts from the early days pop into my mind. Things that I wasn’t able to write about at the time, whether through lack of time, energy or simply an inability to articulate what I’m feeling. With time and reflection, it’s sometimes possible to muster a much more coherent post than at the time when my feelings are too raw to assemble.

I’m sure we’ll be keeping a close eye on the world of Leukaemia throughout our lives, and we hope to see a day when it is preventable. Whatever happens, we’lol know that our brave girl made one of many marks she’ll make on the world at just three years old when she shared her own contribution to an important cause by supporting this research x

5 thoughts on “An update and an early days catch up

  1. Thinking of Poppy and Daisy and all that you and the family are experiencing on this journey. I wish there was more I could say. Never the less to contribute to the research is a bold decision and goes some way to helping treatment move forwards. As you say, things have moved on in the last 50 years precisely because of people being willing to take part. Keep going! Lots of love coming at you. xxxx OOO

    Liked by 1 person

  2. I’m soooo behind on reading this. It’s powerful stuff , + makes sense ; your honest description/ shock of what you were having to deal with. . Poppy is amazing + how Daisy copes too. Research + the combined evidence will be so fantastic that other families will benefit too.

    Liked by 1 person

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