An update from Bristol Children’s Hospital

It wasn’t supposed to happen like this. A mere week away from the end of active treatment, Poppy spiked a temperature at home alongside some itchy blisters. As per our protocol, we headed to Gloucester Royal and were initially expecting to be sent straight back home.

The hospital is usually a very safe place for Poppy to be, but at the moment, the less time spent there the better. Her temperature seemed to settle back down and her spots were deemed an irritant rather than an infection. Despite this, we stayed in as a precaution and just as it was looking like we might be released, Poppy spiked a raging temperature of over 40c and came out in a whole host of new blisters. Chicken Pox. We’ve successfully avoided it for two years whilst Poppy mixed with children at nursery and then school. We always knew it was a huge risk to her health and thought we had made it though treatment without that particular complication.

I came out in Shingles several weeks ago. The GP advised that even with Poppy in the house, the chances of anyone getting Chicken Pox from Shingles is incredibly low. They would need direct contact with the spots themselves and that definitely didn’t happen. Not only because I was being very careful, but because it was so painful that I flinched if anyone came anywhere near me! 

Poppy’s consultant has never seen a case of anyone catching Chicken Pox from indirect contact with Shingles. He went so far as to say that it is the sort of thing you read about but never see. I think that tells you everything you need to know about her immune system at the present time. And whilst a hefty dose of guilt does keep trying to creep in, I know in reality this was unfortunate and in the current climate, unavoidable. At any other time, I probably would have taken myself elsewhere to recover or perhaps the girls would have had a holiday sleepover at their grandparents to allow me to rest more than anything. They also wouldn’t have been spending so much time with me, as they would have been at school and nursery for at least some of the time. There is no point looking back, only forward now. It’s not so much guilt, as utter disbelief.

I’m writing this from Bristol Children’s Hospital where Poppy was blue lighted in an ambulance earlier today. Gloucester have thrown everything they can at this since Monday, and her temperature is still over 40c. It’s time for a precautionary next step, which means transferring to Bristol for more specialist care. It’s hoped it won’t be needed, but we are in the right place if it is.

Bristol remains Poppy’s main hospital, despite the fact that we have only spent two weeks of the last two years here. They remain involved in all her care from afar, and it just happens that Gloucester are able to deliver the majority of what is dubbed shared care. Today, Poppy was reviewed by the original oncology consultant we saw two years ago. She’s still been involved in her care but hadn’t expected to see her again. She is amazing. I loved her then and still do now – she was the first person to let us leave the hospital for a short time and take Poppy and Daisy to the park together. One of those special people who knows you need more than just medicine to make you feel better.  

I feel safe here. Despite the relatively short time we spent here, it is so familiar and as weird as it sounds, we have happy memories here. When we were discharged after our initial stay, we drove home so carefully; it was like the car ride you have when you first bring a newborn home. We were off to begin a new life together, much like when Poppy was first born. We had no idea what the next two years of treatment would bring, but on balance, we’ve had decidedly less drama than we were expecting. It seems we’re making up for that now as Leukaemia still has a few last surprises for us.

Poppy is not very well. She’s hooked up to oxygen, receiving immunoglobulins, IV fluids, antibiotics and antivirals, as well as various medicines for pain relief. There have been chest x-rays and an ultrasound, amidst numerous blood tests and swabs. For now, she is stable, but we’re riding a rough wave and are back to that delicate time of moment by moment, as even day by day feels too far ahead.

Your thoughts, love and wishes are appreciated more than ever. Our end of treatment celebrations are on hold for what we hope is just a little bit longer.

We will get there. We just need a bit more time. And a bit more hope x

9 thoughts on “An update from Bristol Children’s Hospital

  1. So sorry to hear about Poppy’s chicken pox, especially when she was so near the end of her treatment. What rotten luck for the poor little soul. I’m sure the staff at Bristol are taking excellent care of her and please know that we are thinking of you all and sending you love to help you weather this current storm. xxxxx

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  2. Oh my goodness; what a wrench on you all with all this. Such unbelievable bad luck.
    I hope that you are able to look after yourself aswell as Poppy; shingles is a horribly painful experience for you.
    As you say, you are in ” the right place”! Lots of love to you all + wishing Poppy to get stronger hour by hour.
    The finishing line is in sight; bumps in the road are often hidden + can’t be helped.
    Virtual hugs,
    Norma Atkinson + family. Xxx

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  3. So sorry to hear Poppy had chickenpox, I hope she is better by now and you can finally celebrate EOT. Lots of love to you all from Rebecca, your old friend in York xx

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    1. Thank you so much Rebecca, you’ve been in my thoughts a lot as we approach the end of treatment. I told Poppy you had sent this message and she remembers you as “the doctor with all of the really pretty dresses”. Hope all is well in York – still hoping we can meet you there one day for a catch up. We’re home now and Poppy is slowly recovering xx

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