Birthdays, Easter and Neutropenia

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I’ve not been able to update this blog for varying reasons of late. First off I had some computer trouble, but if I blamed my online absence solely on that I’d be a liar.

The truth is that things were going well. So well in fact that I thought it may not be a very interesting read, but mostly because I’d become very superstitious. I felt I’d be tempting fate to broadcast that things were encouraging and that Poppy seemed to be almost back to her old self. That by letting people know, I’d be setting us up for a fall.

It’s depressing that I’ve started to become conditioned to think this way. Yet another annoying side effect that this is having on my sanity.
I shouldn’t have worried though. I know logically that what I write here will have no impact on how Poppy’s doing. And also I should have trusted that this vile disease wouldn’t have given us too much peace.

Just as I started to relax and start to make some very fluid plans we got the news that Poppy had become neutropenic. Although this was an expected part of her treatment, it felt like a blow. Neutropenia is when there is a significant reduction in the number of neutrophils in the blood. It’s the neutrophils which fight disease and this meant that she was more susceptable than ever to a dreaded infection.
Although her consultant gave us the news in a somewhat breezy manor and didn’t seem too concerned, it threw me for a day or two. It was yet another reminder that something was wrong and that a potential disaster could be lurking around every corner.

But things continue and life goes on. We kept everything as normal as possible, but decided that busy places were best avoided. Just in time for the school Easter holidays. However, there are some occasions which demand a celebration, and with our baby boy’s first birthday fast approaching we organised a smallish party at our house. Family and friends were coming over for cake to celebrate Oscar’s special day. The day got off to a good start. Poppy ‘helped’ Oscar open his presents and they played happily together all morning. Then Poppy got a temperature.

It was straight to hospital for Poppy and Kevin, where she had blood taken on arrival as her temp continued to rocket. I stayed home with the birthday boy, who was blissfully unaware whilst I sobbed at the unfairness of it all.

I know rationally that we can celebrate as a family any time. And that Oscar won’t remember any of the disruption to his party. But, it just felt so cruel. I kept thinking back to a year ago when Poppy met her brother for the first time. How proud we were of her, as she walked into the hospital room and kissed him hello. She could even say his name by the end of his first day. Who’d have thought that a year on, we’d be in hospital for an altogether more sinister reason.

Although Poppy remained well in herself, due to her neutropenia she was started on antibiotics which meant an admission to inpatients where she ended up staying for ten days.
She was treated for an infection, but the doctors were unable to pinpoint the cause. Apparently this is very common, but frustrating none the less. Her appetite was none existent so she was put onto fluids. But, true to form she was up and about and we were left drip stand in hand chasing her down the corridor to the playroom.
During her stay she had three different types of antibiotics, numerous blood cultures taken, a blood transfusion and two platelet transfusions. As ever she took it all in her stride. Occasionally asking to go home and wanting to see Oscar, but never complaining yet taking it all in.
It was our longest admission to date, and we remained the stable fixture in the corner of the ward. While other patients came and went, it never seemed to be our turn to go home. Our pile of Easter eggs grew and the boredom and frustration crept in. Each time her temperature seemed to settle, it would sneak back up. One day she became so hot I started to wonder if the doctors were missing something and there really may be something quite wrong.

Unfortunately for patients undergoing treatment, long hospital stays due to mysterious infections are part of the course. At least I supposed it meant that the chemotherapy was doing its job. We just needed her body to start fighting the infection, and it was taking it’s time.

A week into her stay she was started on Gran Culo Colonising Stimulating Factor drugs, that’s GCCSF to you and I. But it meant it gave her white cells the helping hand they needed and finally her temperatures started staying down. Protocol dictates that the hospital keep her in for 48 hours after her lowest temp, but ten long days later we were free to go home.

Of course it never rains but it pours and Oscar got tonsillitis the day Poppy came home from hospital, but we were reunited at last. It seemed that time had stood still for Poppy as she told me to ‘start getting ready for Oscar’s party’, but I think she makes a valid point. We’re due a celebration and there’s an important matter of a slightly stale cake waiting for the four of us to enjoy.

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4 thoughts on “Birthdays, Easter and Neutropenia

  1. Katie, your writing constantly fills me with admiration and love for the way you, Kev, Poppy (& Oscar!) are coping and dealing with this incredibly vile disease. Hopefully see you all soon. All my love, Rayx

  2. So sorry Katie – just when you think you can relax then life gives you a cruel reminder of the reality of what you’re dealing with. Hopefully Poppy is stronger than ever for it and will continue on her journey to getting better. It is testament to your solidarity as a family that you have overcome this latest hurdle with such honesty and
    dignity. Love to you all. x

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