Back to where it all began…

21st March. A year to the day that Poppy first became ill. I don’t think I’ve ever written about that day before, only from the point three days later when we arrived in hospital and didn’t go home for two weeks. Looking back on it, it was actually quite an odd day for various reasons. A strange series of first time events which stand out now that the day has become so significant.

Poppy went to preschool and I went with Daisy to Happy Beans, which was not unusual in itself, only in that we were trying out the class in the next village along for the first time. I also decided to run there for the first time, with Graham following on with Daisy in the car. A quick change and change over, and Daisy and I enjoyed the class whilst Graham went for a run of his own. We met back at home, before going on to take Daisy to an appointment for her 13 month immunisations. The morning class had been a deliberate decision to make sure it was still a fun day for her before the immunisations. It almost didn’t happen though…our lovely class leader actually locked herself out of the hall, which was an unusual first time occurrence in itself!

I don’t remember what we had for lunch, but shortly afterwards I went on to Poppy’s preschool for my first volunteer session at their afternoon forest school. It was a really enjoyable afternoon playing in the woods with the children, except for one point of concern. Poppy was deeply upset walking to and from the forest school location, crying and asking to be carried. Along with her key worker, I assumed my presence was the cause of this, as she had apparently had no problems walking there on previous sessions. When we arrived back at preschool, she fell asleep sitting upright at the snack table and at that point, I realised she must be coming down with something and was clearly feeling unwell. I was relived to some extent that there was an explanation for her unusual behaviour. Of course, I now look back on that day very differently, wondering how much pain she was really in, but at the time we had no idea what was to come.

I took her home and she went straight to bed. I vaguely recall Daisy also being asleep. I don’t remember much else about the afternoon, only that Poppy slept for most of it. She didn’t wake for dinner or a bath and we decided that we would let her sleep it off and deal with the consequences later if she woke up hungry. Poppy had very rarely been ill before this. There were only two other times, both with sickness bugs, once at four months old and another on holiday in the Lake District just after turning two. It felt like a virus was long overdue and we also knew it was a typical consequence of starting at preschool, which had happened only a few weeks before.

Another first that day was the fact that I was due to start an induction for a new job that evening. Earlier the same month, I had made the decision not to return to my previous job after maternity leave and had begun looking for something new, not thinking I would be hired in new employment within a week of my resignation. I left for the induction training with both girls asleep, feeling slightly worried about them both, but nothing more. We knew Daisy’s sleep pattern would probably be disrupted by her immunisations, and it is typical for children to sleep more than usual in the days afterwards. It seemed strange that Poppy was also unwell with similar symptoms on the same day, without having had an injection, and we commented as such but passed it off as a strange coincidence. It still feels that way now!

I went to the induction but declined the invitation to socialise afterwards, having phoned Graham and found that both girls still seemed unwell. He would be at work the next day, and knowing that I might be in for a testing day, I had an early night. I don’t have much recollection of the next two days, only that we kept Poppy home from preschool and that she seemed to perk up on Friday afternoon. So much so, that I let her talk me into taking her to ballet class which she had only started a few weeks before. As it happened, she was too tired to join in on arrival and sat on my lap throughout, wearing fairy wings and waving a wand, quietly enjoying watching her friends dance. I had completely forgotten this detail until a friend pointed out that we had seen them that day. We weren’t the only ones in shock when 5 days after that ballet class, she was diagnosed with Leukaemia.

This year, I knew the coming days and week might trigger some memories from last year but I had no idea how unnervingly familiar it would all become…

Last Friday, Poppy woke up vomiting. I rang the oncology unit, as we always do when Poppy is unwell, and was told to keep her hydrated if possible and keep an eye on her temperature. They kept in touch every few hours, messaging to ask for updates on how she was. Her temperature was hovering at 37.9 (just below the threshold of 38 for an immediate admission) and she wasn’t able to keep water down, so when her consultant rang in the early afternoon, he asked us to bring her in to ensure she wasn’t becoming dehydrated. On arrival, we were escorted to a triage room on the ward – the first time since diagnosis that we have been on the children’s ward, rather than the specialist children’s oncology unit. This was because Poppy came in with vomiting and needed to be isolated from the other immunocomprised patients. Poppy had her port accessed and her blood sugar tested, which came back with a very low reading. A few attempts were made to increase this quickly with a fluid challenge and an attempt to rub gel in her mouth, but when both of these didn’t succeed the decision was made to give her fluids as an infusion through her port. It was also decided that these would be needed overnight and we were moved round to an overnight room on the ward. It’s here that things became increasingly familiar…we were staying in the room next door to the one we were in last year, and even the view from the window was jarring.

One thing I had completely forgotten was the noise on the ward – I don’t remember that at all. Our oncology unit is very quiet, compromised of four private rooms, so even though we were in our own room on the ward, rather than the bay of beds you might be imagining, there is still the constant drone of noise in the corridor outside. Not to mention the noise in our own room…Poppy’s fluids were changed every hour that first night. For those unfamiliar with syringe drivers, this means that every hour the machine beeps for 5 minutes with a pre-alarm warning, switching to a louder noise when the fluid has finished. Then there’s the loud noise when the call button is pressed, complete with flashing light to alert the nurse. It’s not over then either. The nurse will then flush the line with a shorter saline syringe to keep it in working order. This usually takes 7 minutes, so after 2 minutes there’s that handy pre-alarm warning again, before the finishing alarm and then the call button noise again. There is then a quiet window of one hour to attempt to go back to sleep, before the whole series of events starts again. Every hour throughout the entire night. You can imagine how much sleep we both got. I say all of this with a kind heart, as despite the lack of sleep, I remain eternally grateful for the fantastic NHS in providing Poppy’s treatment.

Some of Poppy’s blood tests had come back with some abnormalities, so this was discussed with the ward doctors, who were also in conversation with our shared care hospital in Bristol. Being in at the weekend is always a bit odd, as the oncology consultants are not usually in, and the majority of other doctors on the ward have very limited knowledge of oncology. They are incredibly thorough, but it can take much longer to get answers, which leads to an unsettling wait for news. A large part of our stays in hospital are spent waiting for news, whether that be for blood results, consultations with other experts or simply waiting to see how things progress and develop.

Being on the ward at this time of year, had already thrown me, but we were now discussing some potentially serious abnormalities which required further investigation. It was so unnervingly familiar to last year when we arrived on the ward under the impression that we were there as a precaution only for things to escalate extraordinarily quickly. The only difference between this year and last being that last year all of my instincts told me that it wouldn’t result in the worst case scenario we were being prepared for. This year, with the fear of that experience still with me, I honestly thought we were going to be told that Poppy had relapsed or had another type of secondary cancer. There is nothing to contain my fears anymore. The floor of fear has completely fallen through, leaving a dark, dizzying depth that knows no bounds. “That couldn’t happen to us” is no longer an instinctive, almost subconscious thought process. It’s been replaced with “it did happen to us” and therefore my instincts tell me it could happen again.

Before I go any further with my tales of the past week, to save any further worry I will say that Poppy has been released from hospital, and so far, all of the further investigations taking place have ruled out any other underlying conditions. It is most likely that the abnormal results were caused by a virus which amplified the readings, as most of her results have now returned to usual amounts or are at least heading in the right direction. Poppy went in with vomiting, but later developed a temperature which didn’t come down or stabilise for several days, as well as ear pain. She also narrowly escaped another blood transfusion, when her haemoglobin results dropped to just above the threshold for receiving one. She was allowed home to recover once she had been clear of a temperature for 24 hours, with the provision that we would return in 36 hours for repeated blood tests to check everything was returning to her normal levels. Being released from hospital doesn’t mean we leave with a well Poppy, more that she no longer needs treatment in hospital and can recover fully at home.

So back to Saturday. Daisy arrived for an afternoon of playtime, which proved to be a lovely distraction from the worrying feeling knotting in my stomach. In another similarity from last year, Poppy painted a new tile for the ceiling and was given a new colouring set for the extreme bravery she showed when having bloods taken with a butterfly needle. There were lots of new experiences for her this time, with different tests than usual, amidst the new setting of the ward and a lot of new faces. Luckily, some of our nurses from oncology also work on the ward, so it was a relief to both of us when two of our favourites were assigned to look after us. I say us and mean it, as I always feel that I am being well looked after too.

Whilst in hospital, I don’t like that Poppy has to go through everything she does or that we are being separated as family, but I do always feel safe, that we are in trusted hands and the care she is being given is the best possible. Other worries float away, other than anything in the present moment, and Graham and I always individually resolve to live the best life we possibly can for us and our amazing girls. Ironically, things often fall apart a bit when we come home, especially after an extended stay. It takes us all a little while to adjust again, to process what has happened, fix ourselves, catch up on missed sleep and get any sort of rhythm back to our lives. On this occasion, as with the last, it has been Daisy who has been most unsettled by our separation. I came out of hospital on Monday so I could spend the afternoon with her and also go to Runner Beans in the evening. Unfortunately, we were so busy playing, she wasn’t asleep by the time I had to leave, and I left her crying which left me floundering and questioning my decision to go! After four days inside, it was a pleasure to breath some fresh air though and I did thoroughly enjoy the run with such smiling, caring friends by my side. I slept well that night at home, but woke anxiously wanting to return to Poppy’s side and see the doctors on their morning rounds for more information. This meant leaving Daisy crying again, and I felt so torn between both girls. The hardest part by far of all being separated is not being able to be in two places at once. Yes, Daisy can visit the hospital but realistically anything more than a few hours is enough, especially when Poppy is isolated and the playroom is out of bounds. Being confined to a hospital room with a curious toddler and lots of wires and buttons to press isn’t always relaxing, though it did take her almost an hour to pull the alarm cord in the bathroom which was longer than I expected! The play specialists were on hand to keep them entertained with crafts and toys brought to the room. It was lovely to spend Saturday afternoon with both girls together, and they were even treated to a sensory bath after their painting session. A special bathroom on the ward with music, lights and the biggest bath I have ever seen! I was tempted to join them. After being separated, it is so nice for them to do things like this together, to prepare for bedtime with the same things they’re used to doing together at home. Poppy rarely has a bath in hospital, as facilities usually mean a shower, but it always makes me sad to think of Daisy in the bath alone at home. It’s not surprising that she ends up feeling unsettled by the sudden disappearance of half of her family.

After finally leaving hospital on Tuesday evening and then returning on Thursday for repeated blood tests, it has taken us until today to adjust and start to feel that things are on the up again. Thursday was a particularly frazzled morning, with lack of sleep, food, exercise and time outside all contributing to a cranky family. Thank you to everyone we saw that day who welcomed us back to the world and brightened our spirits. We were invited to my parents that evening for a roast dinner, and it wasn’t until I got into the car that I cried silent tears all the way over to their house. It’s like the feeling of releasing a breath that you’ve been holding. A breath that I’d been holding for almost a week. The relief was immense.

Another hurdle jumped over, another week survived, another day done. This time next week will mark a year since Poppy was diagnosed. A year. A milestone that seemed so far in the future, but is now within touching distance. We’re celebrating with a holiday, which is how we celebrate best!

And even though that year means Poppy is not even halfway through her treatment and there is still a long way to go, I know that long way to go will also arrive in the present one day and for now we will keep focusing on each day at it comes.

One day less is now 358 days less! x

4 thoughts on “Back to where it all began…

Leave a Reply to Margaret McIvor Cancel reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s