Small Steps

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When Poppy’s first intensive week of treatment had finished and we returned home she wasn’t the girl we’d taken into hospital. She had no energy or enthusiasm for anything. She only got up to eat.

She spent most of the days lying on the sofa, then would get up to go to bed. Heartbreakingly it was around this time that she told me in a very quiet voice that she “felt sad”. An emotion I’d never heard her express before, and yet again I felt so powerless to help.

We thought dejectedly that this is how she would be during her treatment. But what transpired was that she was actually feeling ill, she was just unable to tell us. After a six night stay in hospital and a course of antibiotics, she returned home and very, very slowly started to come around.

Things we’d taken for granted in the past were now massively encouraging signs. And this made us hopeful that we were starting to see our little girl return.

Whilst there was no running around as yet or the crazy Poppy antics of the past, we’d started to see an enthusiasm for her toys and games. It was so heart warming to hear that she wanted to do such a simple thing as play.

Our recently inherited dining table proved invaluable. It’s now became Poppy’s ‘workstation’. Activities she could do stationed at the table were the order of the day. Whole days now consisted of painting, glueing, play doh. Over and over, on repeat.

It was sometime in March when on a whim we decided to go to Sefton park and feed the ducks. We wrapped up warm and didn’t stay long, but whilst we were out it dawned on me that this was the first time the four of us had been out – other than to the hospital, since before Poppy’s diagnosis. I felt this small outing was, to me a ray of hope in what had been a gloomy time.

Gradually seemingly small things started to happen. Things that may have gone unnoticed to others as they seemed so insignificant felt like a change was taking place within her, and that progress was being made.
I’d taken Poppy to the shops in the pushchair and out of nowhere she asked to go to the swings at the top of our street. More than willing to oblige I prayed that this was some kind of sign that just maybe things were starting to return to normal.

If I think back to when I’d try and sneak past those swings as I was in a hurry to get home, I get so cross at myself that I’d denied her of those times. Looking back, what could have been more important than having some fun? What was the hurry? Had I wasted so many opportunities thinking that there would always be another time to do these things?
I know hindsight is a valuable thing, but I can’t help but feel guilty. That I’d lost sight of what really mattered as I got distracted by everyday life.

As the weeks went on I started to see more small steps being taken. Poppy wanting to play in her bedroom again. Or sleeping through the night after all the disturbed nights in hospital had messed with her routine. I started to see her interacting with visitors once more, and the clingy ways she’d displayed to me and Kevin started to go. Such innocuous things like wanting a bath, bouncing on our bed and climbing up and down the stairs by herself seemed like huge hurdles which she’d overcome. As ever, our Poppy had set the pace and done things her way and in her own good time. I shouldn’t have worried, but when you get a diagnosis of cancer you feel your life will never truly be the same again. Worrying becomes your default setting.

Here we are four months later and it’s remarkable how far she’s come. As I watch her playing and laughing, or even being naughty she’s a million miles from that sad little girl, who’s face was swollen from the steroids and couldn’t walk from the sofa to the table.
And whilst I’m not trying to say that all of her treatment has been a walk in the park, or we have it easy. She’s still facing incredibly big challenges for someone so young. But the little things which I’d taken for granted in the past now give me hope and I do my best to take the time to savour every moment and appreciate our daughter in every way.

One of the reasons I wanted to post about these little things is to show others going through a similar time that, despite difficult beginnings things really can get somewhat better. And, in the main because after that first trip to feed the ducks something a friend said to me at the time really resonates today…

Small steps are actually big ones in disguise.

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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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Treatment Continued

ImageUnbelievably we’re now in Poppy’s 9th week of treatment. It seems so far from when all this was beginning and we were like rabbits caught in the headlights.

At the time of her diagnosis, I definitely couldn’t see this point. And I certainly couldn’t believe that our everyday life would continue – albeit on a rather different scale. But to use a cliché, life does go on. There are still bills to pay, things to do, and not to mention a teething baby to look after…

Life has now reached a new pace, where Poppy’s treatment, hospitals and doctors, are all part of our new regime. Our daily routine goes on and cancer is now a part of it. I used to be scared of that word, but now I hear myself saying it often. I still hate it though.

Subtle changes are taking place. I have a designated cupboard in the kitchen full of various medicines for Poppy and have become the pharmacist of the house. We’re still taking temperatures religiously, but now every few hours rather than every few minutes. I’m almost used to the sympathetic stares from people when we’re out and poppy hasn’t got a hat on.

Trips to theatre have become standard and I’ve managed to stop crying when it’s my turn to take her in to have the aesthetic. The medical terminology and abbreviations which once baffled and confused have become part of my vocabulary. Visits to Daycare for chemotherapy are in Poppy’s eyes, a chance to play with the toys there. The list goes on.

People have often said to us that they’re impressed by how we’re coping. Which although meant well bugs me slightly. We don’t have a choice but to cope. If I sat and thought about the enormity of what is happening and what may possibly happen in the future, then I’d never get out of bed and be no use to anyone. Least of all Poppy.

After the first stage of Poppy’s treatment, Induction, she had an MRD test. This stands for Minimal Residual Disease and is an in depth analysis to determine how many leukemic cells remain in her body. The results came through and the news was good. She’s now in the ‘low risk’ group. Obviously this was the best news we could expect at this stage and the doctors were pleased as it means she’s responded well to her treatment thus far.

I questioned how many cancerous cells were left in her body now, but the consultants preferred to talk in terms of cure rates as the number was so small.  We’re now looking at a 98% chance of cure, needless to say is encouraging – although I won’t be entirely happy till it’s one hundred.  But none the less, this was happy news and all signs at this point are positive.

We then moved onto three weeks called Consolidation which only meant two hospital visits a week. And now we’re on the phase named Interim Maintenance, which lasts for nine weeks. Happily this is a more gentle stage of treatment, with considerably less theatre visits and incredibly weeks whereby we don’t even need to go into hospital.

I’m not wishing to downplay this time. The risk of infections still looms large and the medicine cupboard at home is still full. But this time feels manageable. We’re aware that the next phase of treatment is going to be more of a challenge.  But rather than worry about that, in a more Zen- like state, we’re trying to appreciate the here and now. 

And what we have now is good. Poppy is responding well and we’re seeing our little girl slowly coming back to us as the nurses predicted she would. As I type this she’s running around the house laughing and demanding pancakes.  And I’m certainly not going to let cancer ruin these moments for us. I’m not naive to think treatment will always be like this, but where we’re at now I’m amazed at how far we’ve come.

 

Bald Is Beautiful

ImageI know every parent thinks their child is beautiful and every part of them in gorgeous, but without sounding totally biased here, Poppy really has gorgeous hair.

When she was born it was jet black as I’d imagined it would be. But, as she got older it started changing and much to our surprise it steadily changed to an amazing auburn thing of beauty.

I say auburn, there has been much debate as to what the actual colour is. With offerings ranging from, ginger, titian, red to chestnut. It’s pretty indefinable but it certainly is gorgeous. I have grown accustomed to strangers stopping me on the street to comment on it.  Old ladies have wanted to touch it and followed us around supermarkets. A young woman once chased me down the street to tell me how great it was. And there was a scaly who held a door open for me looked at Poppy in her pushchair and said, “Aye love your baby has got really nice hair.”

 If this sounds like I’m bragging a bit, well I probably am. It’s a sight to behold.

So when treatment started and we saw the first signs of her hair thinning we knew what was on the horizon. The steroids Poppy was taking were making her sweat and her hair was regularly becoming matted and tangled. It was near impossible to get a comb through and it even looked uncomfortable.

Big clumps of hair didn’t seem to fall out, but we were constantly finding it on the pillow and on her clothes. It was distressing for Poppy as it was falling in her mouth and in her eyes. We were reluctant to shave it as we thought this may distress her too. But the decision was soon taken out of our hands and within 24 hours, most of her hair was gone.

We trimmed what remained and made it neater, and to be honest it looked much better. In such a short space of time those beautiful curls were gone and a stark symbol of Poppy’s illness remained.

And although she still looks gorgeous to us and we know logically it will grow back, this has still been one of the hardest parts. Losing her hair is so symbolic of what she’s going through. She’d looked relatively healthy and now… well, now she looked like she had cancer. It was an uncomfortable reminder of what was happening on the inside.

So whilst hair loss may not be the biggest hurdle we’ll have to face, and it means that her chemotherapy is doing its job. And we’ve arrived at a poignant   moment in her story.

Luckily she doesn’t seem remotely bothered. We told her we put her and daddy’s hair in the garden to help keep the baby birds warm at night, and she seemed satisfied by this. In the meantime I’ll hope that this signifies that her treatment is working. And without sounding ridiculously biased once more, if anyone can pull the bald look off then it’s our Poppy.

Kev’s Head Shave Part Two

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The day of Kev’s head shave came around very quickly, and I was under strict instructions to shave it all off properly. As sad as I was to see his thick locks go, I have to admit he looks pretty good as a baldy. We’d like to thank everyone who has donated to CLIC Sargent, the funds will go on to help other families effected by cancer.

Other members of our family and friends are also doing various things to raise money for CLIC and other worthwhile causes so I will be along with information about them accordingly.

I will also update with the grand total of funds raised by Kev once all the donations are counted.

An Education

ImageAfter the first week of Poppy’s treatment there were two factors which would allow us to leave hospital. Firstly she needed to be well enough to go home. And secondly we needed a teaching session with a nurse, to prepare us for what looking after Poppy would now entail. Our roles of parents were now changing and it was up to us to be her main carers, in a very different sense to what it had been before.

It has been a long time since either of us had had to learn anything new but we were keen to pay attention in this instance. Determined to get it right and leave hospital armed with information and potentially lifesaving facts.

When she was initially diagnosed I’d wrongly assumed she’d be in hospital for significant periods of time. I pictured her treatment as a dramatic scene where she lay forlornly in bed whilst everyone sat around feeling sad. There’s a bit of a theme developing here, I was incorrect yet again… After her initial and intense stay as an inpatient the remainder of her medicine will be given at home or in Daycare. And rather surprisingly providing she doesn’t develop an infection there’s no reason for her to be admitted again.  

Unfortunately infections are a huge part of life for anyone undergoing treatment for Cancer. They pose a significant risk to patients and in some cases can mean the worst.

This is due to the chemotherapy she will be receiving. So whilst chemo destroys bad cells, it can’t distinguish which cells are healthy and which are bad, and as a result cells which fight infection are destroyed.

 As Poppy now has low immunity one of our main responsibilities is to check her temperature regularly. And by regularly we find ourselves doing it constantly. Temperature is the first sign of an infection and if hers goes to 38 degrees or over we’re under strict instructions to ring Oncology immediately.

A lot of the information we were given comes down to basic common sense, such as being hygienic and cooking food well. Chicken Pox and Measles are incredibly dangerous for Poppy so we’re to avoid any prolonged contact with possible carriers.

But with the risk of an infection looming over us at all times, finding the balance between being sensible and living in a bubble for the next few years is going to be hard.

As such we have decided to apply some basic ground rules to our house which means shoes off and hand sanitizer when you come in, and a strict ban on visitors with germs of any kind.

We can control what comes into our house to a certain extent, but when we’re out and about it’s another matter. The hospital were keen to impress on us that life should carry on as normal, but it’s sensible to avoid places when they’re really busy.

We were given a whole host of precautions to take a symptoms to look out for, which all sound very scary but were assured that help and advice is only ever a phone call away should we have any concerns or questions.

So we left hospital a bit wiser and on the road to becoming experts in something I’d never wished to be adept in knowing. It’s all for the greater good of helping Poppy but none the less it feels like another indication that we’re facing something so scary and it all started to feel heartbreakingly real.

 

 

 

Birthday

ImageToday saw the very important occasion of Poppy’s 3rd birthday. It’s hard to believe our little lady is entering her third year.

It’s strange to think where all the time has gone, the past three years seem to have flown by.

I tend to get a bit nostalgic around birthdays. Looking back on birthday’s past. Last year when everything was Peppa Pig themed, I was 7 months pregnant with Oscar and I made cakes for a tea party at our old flat.

Before that, the celebration and excitement that was her first birthday. Complete with a big party and naming ceremony. The stress organising it all, and she didn’t smile once all day!

Or, the day of her birth and her dramatic arrival into the world. Seeing her eyes looking up to me for the first time, and meeting the tiny person who was to change our lives completely.

Who’d have thought this time last year that today we’d be visiting the Daycare centre for pre theatre blood tests. As an important week for us looms with theatre, tests and chemo all scheduled for the next few days.

She had been less than enthusiastic about her big three in the days leading up to today. Who could blame her really?  This past month has been her toughest of her tiny life so far.

So much change and upheaval crammed into such a short space of time, would be too much for anyone to handle, especially someone so young. Her little world has been turned upside down. You can understand her not being in the party mood…

 I’ve tried not to get too miserable about our situation. But sometimes a wave engulfs you and it’s hard not to get carried along for the ride. If you consider the whys and wherefores of what we’re experiencing it can drag you down, and you’re no help to anyone. Maybe I’m being overly sentimental but today I was overcome by the unfairness of it all. Poppy should be enjoying a party with friends and family. She should be high on a sugar rush, ripping open presents and full of excitement at what being three will bring.

Instead she was tired and quite subdued. Unrecognisable from the steroids changing her appearance and the effects of chemo taking its toll.

It wasn’t all doom and gloom though. She enjoyed her new paints, and eating dinner from her new robot plate. She raised a smile for visitors and made some arty pictures with big brother Zain and his girlfriend Alyssa.

So perhaps it wasn’t how I’d imagined Poppy turning three would be. And maybe it won’t be the best birthday Poppy ever has. But, what I do know, is when all this is better we’ll have the best party. There’ll be food, presents and maybe even a slide!

So in this instance I’m going to look forward not backwards. Next year will be better. And the year after that.  And all the many years that will follow. I know that for certain. I promise you that my sweet girl. Happy Birthday Poppy Leah.

 

 

 

 

 

Kev’s Head Shave

One of the many fantastic people we’ve met since all this started has been our CLIC Sargent social worker. CLIC Sargent are a charity set up to help children with cancer and their families After diagnosis all families are assigned a social worker to help them, should they need with any financial and emotional support.

I’d never heard of them until a few weeks ago, there’s no reason why I would have. I hope anyone reading this never has to know about them. But, what you should know is, the work they do and the support they offer has been a massive help to us.

It’s easy to underestimate the drain on your recourses that having an unwell child and stays in hospital can have on a family, and knowing that there’s help out there and someone to offer to ease some of the strain is priceless.

We decided to try and return some support back to them, and as such Kevin is going to shave his head. It’s a small sacrifice, and if you’ve ever witnessed Kev’s hair in its afro heyday – you may even say this is long overdue.

His justgiving page can be found on the link below, and if you could contribute a little something that would be much appreciated.

Poppy and her daddy

Poppy and her daddy

http://www.justgiving.com/Kevin-Salim

Treatment Week One

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I like to think of this as the attack phase. Kind of like when you start the Dukan diet, it’s time to blast those cells.

Prior to starting treatment we’d been allowed to return home for one night only.  Looking back I can see now I’d focused too much on our brief night reunited as a family since diagnosis.

And as a result I think I’d not prepared myself for the thought of what we faced the following day.

We were to go into hospital Sunday afternoon in preparation for treatment on Monday. As the afternoon grew closer our emotions ran higher. I felt like a traitor taking Poppy back to the place she’d only just escaped from. Rationally I knew we were taking her to get help. But I couldn’t get the thought out of my head that we were taking our baby girl for medicine that was going to change her personality, her limitations, her looks and make her feel a lot worse before she was to feel better. I was going to make her ill and it symbolised the start of a very long road for us.

Not for the first time I felt I was offering her up for something I had absolutely no control over. It’s a strange feeling putting your trust in other people to protect your child. That’s my job after all, or it used to be….

Poppy was of course oblivious to all this, sitting quietly in the back of the car, unaware of what lay ahead. While in the front we felt guilty, terrified and alone. I don’t think I’ve ever felt as scared as I did that miserable grey Sunday.

Some wise ladies on the internet told me that treatment is pretty unremarkable, they weren’t wrong. I’d imagined chemotherapy involving those white spacesuits like in ET and face masks. But I was rather off the mark on that one.

Poppy started her treatment by taking steroids in the form of some ineffectual looking 5mg of medicine called Dexamthasone. The biggest effect this had on Poppy was that the fluids she needed whilst starting steroids meant she was to be attached to a drip for the best part of a week. So far, so inconvenient. But, never one to let these things stop her, off we trundled to the playroom desperately trying to keep up with her whilst pushing a drip stand on wheels akin to getting the most useless trolly in the supermarket.

Having been described by the doctors as ‘not very veiny’ they’d had trouble getting fluids to and from our Pops and this week she was lumbered with a cannular in the crook of her left arm. In what was possibly the most unhelpful move ever, each time she bent her arm to eat, play or move in general it prevented the fluids going into the tube and set off an alarm on the monitor it was attached to. Unfortunately the incessant beeping could only be switched off by nurses and this resulted in them having to constantly come in to switch it off and some very disturbed night’s sleep.

One old school nurse even took the time to fashion a splint in an attempt to keep her arm straight. As it was the hospital’s policy not to use splints anymore, she ended up with a makeshift device which looked the size of a cricket bat.  Good on her for trying though.

Week one also saw chemotherapy with the strange name of Vincristine , which was administered through the line in her arm. It was over within minutes and seemed rather uneventful.

In addition to this and probably the most unpleasant for Poppy was an injection of medicine called Pegaspargase. Needles are never going to be well received but after everything else, this just seemed cruel. At least she didn’t know what was coming, but sadly it was to be the first of many.

During treatment week she also had her blood taken with an alarming regularity. Every six hours. I was glad they were being thorough, but, well I was amazed she had any left.

She also needed a trip to theatre for a Lumbar Puncture whereby they check the fluid around the spine. The doctors rather breezily mentioned they check to see if the cancer has spread to the brain.  What is standard procedure for the doctors sounded like another potential nightmare for us. This was Poppy’s third theatre trip in a week and they were getting harder for us each time. Only one parent is allowed in as the patient goes under anaesthetic, so we reluctantly took it in turns to say goodnight as the ‘special medicine’ puts our baby into a deep sleep yet again.

As traumatic as it is for us when Poppy goes to theatre, her biggest grumble is being nil by mouth from midnight the night before. As the steroids kick in and her appetite increases we had to pretend our walk to theatre was a trip to the cafe to get sausages. And we certainly have to ensure we have them waiting for her when she wakes up….

 

And so, in spite of drips, alarms, anaesthetics, needles and going hungry Poppy’s treatment week came to a close. She’d managed a few visitors, trips to the playroom and the minimum of fuss. She amazed me yet again. She handled it all with good grace and without too much protest.

Doctors who had been eyed suspiciously at the beginning of the week were now tolerated. Nurses disturbing her for constant observations were met with a weary resignation. A sad sign to us that she was beginning to accept what was happening and we’d better get a handle on it as quickly and impressively as she had.