Saturday, 31 December 2011

Goodbye and good riddance

2011 has certainly been the toughest of my life. 

I will be very pleased to see the back of it.

I just pray that 2012 will be much kinder to us all.

My new year's resolutions include trying to get to grips with my comfort eating and to lose some weight; this will be aided by having to operate a much stricter budget as our income has dropped substantially and we are facing even more uncertain times. 

I realise that many people are struggling at the moment and I sincerely hope that 2012 is kinder to them too.

Have a happy, healthy and peaceful New Year. 

Friday, 30 December 2011

The beginning - losing her hair

This is something that I wrote around the time that daughter was undergoing initial treatment:

In those early days she endures a multitude of tests and medications, often intrusive and at times painful. She has lumbar punctures – under anaesthetic, modern medicine would not be so cruel as to subject children to that horror whilst awake – intrathecal chemotherapy (drugs into her spine), IV chemotherapy, anti-sickness tablets, steroids, blood transfusions, platelet transfusions, hydration, blood test after blood test, cannulas in her arms for the drips.

And yet, her main concern is hair. It is the symbol of childhood cancer. Skinny, pale-faced little girls with head scarves and big black circles under their eyes. They are bald under there; hair gone with the chemotherapy. It is the first thing you think of when they say cancer. It is a collocation. Think cancer, think bald. She loves her long hair. And now we know she will lose it. Almost Samson-like. The hair will go and with it her strength, her appetite, her energy for life. I organise for a lady to come and cut it short, to try and soften the blow. This becomes an appointment I live to fear. It is irrational. I have seen her go through so much worse in these first few days, but the thought of her hair being cut makes me feel sick. Not because of beauty or acceptability, but because it symbolises what is soon to pass, what will happen to her. Is she strong enough? Am I strong enough?

We spread a bed sheet out on the floor of the bay and put a blue, plastic chair in the centre of it. We drape a second sheet over her shoulders. She looks tiny, swaddled in fabric, far more fragile now than as the robust, ten pound newborn she once was. Who knew? Scissors snip through the unkempt tangles: mousy brown, adored hair drops onto the sheet, like blood, or tears, spreading in a pool at her feet. She doesn't say anything. Shorter and shorter her hair is cropped. Again, I find myself holding my breath and waiting. Each cut of the scissors reminding me that life has changed. My daughter will be unrecognisable, just as life is now unrecognisable.

When the hairdresser finishes, we show my daughter her hair in a little mirror, held steady in hands that long to tremble. It is a pixie crop, and she does look elfin. It is beautiful. But it is temporary. The lady can already feel the follicles of her hair loosening. It won't be long before it falls out completely.

Wednesday, 28 December 2011

The cans and can'ts

I said a while ago that I would write about some of the restrictions that we have to live with in order to avoid infections.

As part of daughter's care team we were given the help of a nutritionist. 

I think we'd assumed that they would try to enforce a really healthy diet and tell us to stay away from rubbish.  This is actually not the case, to a point.

The nutritionists encourage the parents to give them what they want.  Daughter's appetite was shocking when she first became ill, but the steroids she was given as part of her initial treatment (and for 5 days now each time she has vincristine) suddenly sparked a desire for salty food.  This is very common.  The fridge in the cancer unit was filled with very similar delights for all of the kids - babybels, cheese strings, frubes.  Parents buy food to take in for them, and it was interesting to see that they were all craving the same things!

The reason parents are encouraged to feed them what they can is that they need to keep eating.  If they stop eating, or their mouths become too sore from the vincristine (blisters in the mouth are a common side-effect) they can try calorie-heavy milkshakes, or, failing these, a feeding tube. 

Daughter managed to get by without one of these, although at one point she was fed into her line as she was very poorly had to be put on drip food.

Anyway, the list of what to avoid is like being pregnant, but much, much longer.

The biggest problem comes from not being allowed to drink tap water OR bottled water.  The only water she can have has to be cooled, boiled water or ready-made drinks.

She can't have food that has been stood.  This rules out much take-away or 'fast food', although many outlets are good about making things up fresh.  Fast food isn't the thing you jump to feed your child when they have cancer, but if Macdonald's french fries are the only thing that they will eat, then you find yourself willingly going in and asking them to give you some straight from the frier.

It is a minefield and it takes some getting used to.

One thing I found interesting was the automatic belief that many of the bugs they pick up are from other people.  Most of them come from their own bodies, although we are still advised to keep them away from anywhere crowded when they are neutropenic. 

Trying to be philosophical

I've come over to my parents' with son whilst daughter spends some time with her Dad.

We've got to talking about next year. 

Daughter will be trying a phased return to school again next week.  I'm not sure how long to give her to resettle before I try to start work again. 

We attempted to go back to 'normal' in September when she started maintenance chemotherapy - under direction from the hospital - however, it didn't work out.

I want to go back to work as it will be a sign that things are going back to normal, that she is getting better.  It will also help our financial security as I work full time. 

I want to be able to plan things again.  I am one of life's planners I think; I like to have things to move towards and goals to achieve.  I have spent a year in this limbo of not knowing and not being able to plan anything, and it's really tough.  I wish I was the kind of person who lived for the day and worried about tomorrow when tomorrow comes, but I've always liked to try to know what will happen next. 

I'm trying to be philosophical about it: this too shall pass, or, it will all work out in the end. 

I hope so.

I'm not a very religious person, but I find myself wondering sometimes whether having faith, or God, or a belief in fate and predestination, would help me.  Perhaps it would make me feel less responsible for everything?  I could allow myself to see what happens without trying to take control of it.  Because, ultimately, trying to control everything is impossible.  That way madness lies.

Explains much!

Monday, 26 December 2011

Vincristine fatigue

We managed Christmas at home!  We had a lovely day.  It was our first one together at home as we normally go to the parents'. 

Daughter was really pleased with all of her presents, mainly because they were largely comprised of 'Living Dead Dolls'.  She collects these.  She also got a kindle with some books and a pair of vampire bunny slippers - she is a ghoulish child!

The steroids had kicked in so she managed her Christmas dinner too.  

I just felt incredibly thankful that we were all together.  I daren't dwell on what might have happened if I hadn't pushed her diagnosis with the hospital this time last year.

She has got vincristine fatigue from the chemo that she had on Thursday.  She is feeling very tired and aches, but we are used to this as it is regular side effect.  She's looking forward to going to her dad's this evening and getting her second Christmas!

We are nearly at a year since diagnosis.  I will muse on this more later as I have so many things going through my mind.  I need some blog therapy :-)

Friday, 23 December 2011

On track for Christmas

I don't know whether I dare write this post, as I will possibly jinx it.

Daughter's counts are better and we are on track for Christmas at home.

My biggest concern at the moment is have I got them enough presents, and are my mince pies edible?!!

It makes such a nice change.

the problem is, as soon as things settle down I get overtaken by an incredible tiredness.  It's like I function on adrenaline and when all is calm, I shut down.  

Anyway, I would like to take this opportunity to wish you all a very happy and peaceful Christmas.

Thank you for reading so far.

Tuesday, 20 December 2011

Praying for a Christmas at home

Preparations for Christmas are done.  This is because I have a lot of time on my hands!

However, things are a bit bleak today.  Daughter is covered in a rash.  Because there is no temperature with it, we are fine to wait until her chemo appointment on Thursday to get her checked out.  They said if I was very concerned I could take her down.  I'm going to see how she is when she gets up.

My son has a fever temperature though.  This makes it difficult as I can't take him to hospital with a temperature because he will put the cancer patients at risk.  I'm at home alone with them, and husband has used all his holiday already going to hospital/helping me, so I don't know if his work would release him to come home and stay with son if I need to take her in.

I'm also very worried that the rash is something more than just a rash.  At the moment it looks like red blotches, with no evidence of anything more sinister.  However, we live in fear of the POX as son has never had it, and daughter will be put at risk by it.  She had a small shingles rash recently, so I know what I'm looking for and I'm reasonably happy at this stage that it isn't, but I will be watching them like a hawk.

Worst case is that it is, and they drag her into hospital for at least 5 days on antibiotics, usually more.

I feel like I'm always ringing hospital about something, and that I'm always taking her in.  I'm sure they roll their eyes on the other end of the line when I tell them it's me calling. 

I'm just hoping that when she gets up, it's looking better.

Please, please, please, please don't make us have Christmas in hospital.  This year has been tough enough.  It's the one thing we've all had to look forward to.


Thursday, 15 December 2011

Crawling her way out of neutropenia

Well, daughter has crawled her way out of neutropenia and is hovering just above the acceptable chemo limit.  She will restart her tablets tonight.  I am really hoping that these will not make her ill, given that she is only just within the acceptable range.

I really want us all to have a special Christmas at home, after what has been a very hard year.  This is for all of us.  I think spending it in hospital would put a real strain on everybody.  

Tension is running high as son's 3rd birthday is one sleep away.  He is already over excited and threw a huge strop at his playgroup Christmas party this morning, and attempted to overturn the cake stall.  He is going to be as high as a kite in the morning.

Birthday cake, as predicted, looks naff.  However, he is a toddler so he was very chuffed with it, and that's all that matters!

Daughter and son sat playing bricks all afternoon. It was lovely to see.  Duplo is a great bridger of the 10 year age gap between them.

Wednesday, 14 December 2011


Life is one big wait at the moment.  

I vaguely recall that when Ade Edmonson was interviewed about Jennifer Saunders' breast cancer, he said that people were under the impression that it was like a car crash of horror, but it's not, it's a long, slow, painful slog.

Much of this is because of the waiting.  

We are waiting for normal life to resume; waiting for her body to be well again; waiting to return to school and work; waiting for money, and the choices that it gives us, to come back; waiting for being able to go out and do things without restriction.

Today, we are waiting for her blood test results.  She's been off chemo for 3 weeks now, which isn't ideal, as her counts are too low to continue.   I am hoping that she will get the all clear to be able to restart her treatment tomorrow.

I am presently waiting for my son's 3rd birthday cake to finish baking.  I am not a good baker.  My cakes are pretty craptacular.  This year, for a bit of variety, I have purchased a 'cheat' sugar paper Fireman Sam picture to put on top instead of the normal smarties.  This would be great, except husband has just pointed out that the chocolate underneath might obscure it, given that it is a thin, white picture...

I think it could be some time before I attempt any kind of cake that is an actual thing.  Well, it's chocolate, so it'll taste okay.  That's as long as I stop typing this and go and get it out of the oven.  :-)

Tuesday, 13 December 2011

Taking things for granted

I'm watching 'Money' on BBC2 about people with a household income of 40k.  One family has a son who has cerebral palsy.  They have got to go out and raise 60k in order to fund an operation on his spine.  They have debt, but their main priority is getting the money to help their son.  The mum is in tears when she talks about seeing 'normal' children and having to fight to get him the operation.

In the past I've taken everything for granted.  My family, my job, my income, my own health and the health of my husband and children, my home.  

It is very strange when things begin to slip through your fingers.  What were problems a year ago are trivial now.

Every day there are people out there who are having children diagnosed with serious illness.  Every day there are people trying desperately to raise the money that might help their child to survive.  There was a fund local to me recently that needed to raise 125k for a teenage girl to have surgery for a brain tumour in America. It was the only thing left that they could try.

Life is incredibly cruel.  Money and being denied things because of it is incredibly cruel.  Such is life, I suppose, but that doesn't make it any easier when your children are on the receiving end of total crap.

I am trying to be grateful for the small things now.

Sunday, 11 December 2011

The saddest hug

The saddest hug I have had with daughter this year was when she was having a finger prick done to check her bloods.  She doesn't like having these, and I hold her close to me so that she can't see what they are doing.  They prick the finger then squeeze enough blood to half fill a vial.  It takes a few minutes and makes daughter feel quite sick.

This time, I was hugging her and she started humming Winnie the Pooh.

I used to sing it to her when she was little and I was cutting her nails.  She is Asperger's and hypersensitive, so having her nails cut can be horrible for her.  I sung Winnie the Pooh to distract her and stop her feeling scared.

Because of her autism, she doesn't always tell me how she feels.  Holding her and hearing her hum the song just reminded me how hard all of this is on her.


In my living room I have a sledge, 3 stuffed reindeer, and a small boy in a Santa suit delivering presents to us (his toys wrapped in tea towels he's pinched from the kitchen).  He keeps getting quite cross that the reindeer won't fly.

I think, perhaps, I have built up Christmas a bit much in this house this year...

We are going to have our first ever Christmas at home: me, husband, daughter and son.  I am used to spending it at my parents' house, so it will be a bit of a culture shock.  But I am looking forward to it.  

I think it's because I want to shut my doors and hold my children close and revel in their excitement.

Unfortunately, daughter has to have vincristine (chemo drug) on the Thursday before.  She has this monthly.  It can make her sick; tired; her bones hurt and her mouth gets too sore to eat for a few days.  I'm hoping it will be kinder to her for Christmas, but if it isn't then I will just have to make another Christmas dinner when she feels up to eating it.

I have spent a small fortune on presents.  I can afford it, as in it isn't on hock, but I'm sure the money could have been better saved for times ahead.  I think I have done this because I find it strangely calming, to buy nice things for my children.  This year I've found myself using material things to express love more and more frequently, as if buying daughter a book or a DVD will paper over the cracks caused by illness, will make her feel better.  This isn't to say we aren't tactile.  I hug my children all the time.

During a year like this, they need it.

Saturday, 10 December 2011

Hospital, part 1

So they confirmed that daughter has ALL, which is the most common form of leukaemia, and the most treatable.  I suppose I felt  a mixture of relief that it was the least serious type (If there is such a thing?  It is still fatal for 10% of children with it) combined with anger that she has leukaemia in the first place.

Because daughter was over the age of 10, she was automatically put onto regimen B, or moderate risk.  There are 3 regimens of treatment for leukaemia: A, B and C (C being high risk).  

The start of regimen B was a stay in hospital for 4 weeks.

Hospital is a very difficult place to be.  Firstly, it was a children's cancer ward as daughter, at 12, was a year too young to be allowed on the teenage unit.  Compared to other wards, it is bright, well-equipped with toys and sources of entertainment and very hi-tech.  There is a charity that raises money that goes in part towards paying for play workers and equipment for the cancer wards.  This is because the disease is shockingly cruel and the stays in hospital can be long and arduous.  It is painted with beachscapes and the treatment rooms have wonderful murals on the walls.  It looks amazing.  They are trying to  mask the brutality of what happens in there.

We were living in a bay that had 4 beds.  Each child is permitted one parent/relative/friend of family to stay overnight (on the day of diagnosis both of us were allowed to stay, but this was the only time).  We get to sleep on fold out chair-beds with hospital sheets.  Because the children are there for a long time, you set up a temporary home there.  We bought a new duvet for daughter and some brightly patterned covers.  It made the area 'hers'.  

If a child has an infection that puts others at risk, they have to be isolated in a side room.  More on this later - we've done quite a few stints in these this year.

There is a parents' room with a fridge to put your food in.  There are a couple of toilet/shower rooms that everyone shares.  When the ward is full, there are 17 beds.  It is, more or less, always full.

One of the hardest things for any parent or child in this environment is having to adapt how you live amongst strangers, in the midst of this horrible illness.  Everybody does things differently - do you read a book, or watch television?  How loud do you watch television?  How late do you watch television?  How late do you allow your child to stay up?

Many of the children are toddlers.  This made it even more difficult to be there.  I am not talking about the noise - I have a toddler myself - it is having to see small children put through things that they do not understand.  At least we could talk to daughter about everything that was happening to her; explain it.  She understood each treatment was helping to save her life - even if they were very tough.

There is always a shortage of staff, and dealing with a number of different doctors can prove tricky, if different ones tell you different things.  More on this later, I think.  Dealing with hospital stays has certainly been one of the most draining parts of the process for both daughter and us as her parents.

Friday, 9 December 2011

How can you help yourself?

I've just done such a bad thing.  I thought I'd shut my eyes for a minute, and fell asleep for over an hour.  Meanwhile, childminder tried to return little boy early as she's going to see her daughter's Nativity at her school.  I didn't hear her first knock.  It was only after ten, frantic minutes I woke up.  I feel so guilty!  

He still has a childcare routine at the moment as I'm still planning to go back to work when she is more settled.  I don't know if I'm kidding myself, but we are going to try again with school in January.  I heard from them today. They've said she can do 3 days to start with, so they've planned a timetable for her.  She's dropping a school year, which will be quite tough for her.  She's missed a full year of school now though, so we've had to accept it's for the best.  She loves the academic side of school, but, because of her autism, she struggles with the social side.  I think she will thrive as she gets older and into the more academic circles of Sixth Form and uni, should she choose to go.

So, how can parents help themselves when they have a child with cancer?

I am not the best person to answer this question as I've been pretty shocking this year, and I've had some serious downs.  I've developed an anxiety problem and I've been medicated for depression.  But, there's a few things that I've learned now that might be of use to someone at an earlier stage than I currently am.

Firstly, be very kind to yourself.  This is very hard for me to do, but  have to try.  I have to forgive myself for gaining as much weight as I have; I have to keep telling myself it is because I have medicated myself and I have got through, so far.  We have to do what we can to survive.

But, I eat because I repress things.  So, if you can, talk to somebody.  I don't think this should be a partner or friend or relative.  Of course you can talk to these people, but you need to find yourself somebody who you can be completely honest with, someone who asks you the questions these people would never want to, for fear of opening the floodgates.  I have only recently found myself a lovely therapist, and I really appreciate my time with him.  I strongly recommend that anyone whose child is diagnosed does this too, whether you go through your GP and get a referral for counselling, or you source someone privately.  We were also allocated a Macmillan Social Worker, she is amazing with daughter and often has little private chats with her; I am sure if I asked, she would make time for me too.

When we are in hospital, complementary therapists often volunteer their time to giving parents little treats.  Many parents turn down this offer.  I actually found them rather wonderful, and I am very grateful to the lady who volunteers her time each Friday at LGI.  I had both Indian Head Massages and Reflexology.  These are both things I wouldn't usually bother with, but they helped me to relax at times which were very stressful indeed.  Her dad used to go for them too.  We would get quite competitive about who would go first.  Occasionally daughter had reflexology on her feet.  This also helped her to relax.  I think the message here is to try what is on offer as you might find it helpful.

Make time for your partner.  This has been so difficult this year, and I feel my poor husband has been very neglected.  He has essentially become my carer.  We have managed to sneak off for the odd meal.  At one point we were even going to go away for a weekend, but when the time came I couldn't leave daughter as she wasn't up to it.  Planning things is very difficult.  I'd love nothing more than to take my family away somewhere sunny for a fortnight but (a) daughter's cancer prohibits it (for example, she can only drink cooled boiled water, not tap water or bottled water, which makes staying hydrated from a hotel room quite tricky, let alone what happens if she gets ill abroad) and (b) we are skint.  At least we can look forward to doing something nice to celebrate once she finishes treatment.

I digress a lot.  Apologies.  I will write more later about the cans and can'ts of cancer, as it is a bit of a minefield.

Finally, parents, take care of yourself.  Eat well, sleep as well as you can, try not to become hooked again on things that might be damaging to you in order to get by, although, if you do, forgive yourself.  Nobody on Earth would want to trade places with you.  You are in the worst place and entitled to get by any way that you can.

Hello Mumsnet!

I am delighted to have been accepted onto the Mumsnet Bloggers Network. 

I hope my blog can help to inform a wider audience about what having a child with cancer is like, as well as offering a source of support should anyone need it.

In times like these, we should stick together.

Thursday, 8 December 2011

General Anesthetic

After the doctors become suspicious that there is evidence of leukaemia in the blood, they need to do a bone marrow biopsy to check, as this will confirm their diagnosis.  They also perform a lumbar puncture in order to check the spinal fluid to see whether the leukaemia has hidden there too.  

Leukaemia is a sneaky bugger.  It likes blood and bones, it likes spinal fluid and hiding around the brain, and it likes testicles.  This is why boys have to have an extra year of treatment, to make sure it hasn't secreted itself in those instead.  For girls, treatment is just over two years; for boys it is just over three.  It is hoped that the patient goes into remission after the first month (induction phase) of treatment.  The rest of the time is spent keeping the leukaemia away.  Without this treatment, it would come back.  It is sneaky AND persistent.

Anyway, these procedures are automatically done under a general anesthetic.  This is good.  I remember seeing Izzy wince in discomfort on Grey's when she had to have a bone marrow biopsy (which, lets face it, means it is considerably worse in real life).  I didn't want my daughter to have to have needles in her bone and spine without being asleep.  

However, the first time they go under, it is an emotional affair.  At least one parent, if not two (depending on where the procedure takes place; they are more strict in theatre, but the clinic has its own anesthetic room as the procedures are such a regular part of cancer care) can go in.  The first time they go to sleep, it is very hard to see.  My daughter was 12 and is adult-sized, and it was awful.  I can only imagine how tough it must be to see a baby or a tot put under.  Thankfully, the anesthetists are very kind.  We always get to give her a kiss before we go out and let them get on with it.

General anesthetic can be done by gas, or by what they call 'magic milk' which is injected directly into a line.  My daughter LOVES gas.  Many of them do.  It essentially makes them drunk.  Occasionally, they can suffer the hangover too; she has been sick once after anesthetic.  

Having anesthetic becomes a very regular thing.  She's had loads this year; I've lost count.  I would guess at a couple of dozen or more.  She will continue to have them as she continues to need regular lumbar punctures and bone marrow checks.  Part of the lumbar puncture procedure is injecting intrathecal chemo into her spinal fluid; this is to keep the leukaemia out of there.

I don't want to diminish the difficult side of seeing your child put under, but it can be comical at times too.  On one of the first occasions, daughter woke up and told her Dad off because he'd been stealing all of her banana pies!  Once, under a sedative for having a cannula, she had a lovely conversation with a Lurpak advert on the television.  She loves it when we recount these things to her later; she has a good giggle at herself!


Even though life has ground to a halt, we seem to be in the midst of chaos.

At this stage of my daughter's treatment, she should be on a programme of home maintenance.  This means that she has a blood check at home by a community nurse once a fortnight, and attends the clinic at hospital once a month in order to get her chemotherapy tablets.  Her blood count might adjust the amount of tablets that she has to take, but most of her time should be spent at home and going back to school.

Unfortunately, as she keeps getting infections - the most recent was a very nasty sinus one that refused to shift for 6 weeks - then we are still going to the hospital frequently.  She also has home teaching two or three times a week.  I always find myself having to negotiate around hospital appointments and teaching sessions, trying to fit in my responsibility to my little one too.  I'm finding it rather chaotic.  It seems much easier just to go to work each day; everybody is in their place during working hours, then we come home and are all together.  Instead, I am a headless chicken of negotiation, trying to fit everybody in and having to keep a meticulous calendar.  


It's like now I've started, I can't stop writing.

An incredibly wise person recently said to me that when people have a seriously ill child in hospital for a short period of time, they go in, hopefully get better, then come away. And from that point the parents talks to everyone about it; it's their therapy.  But with a child undergoing the long treatment for leukaemia, you come out of the hospital after experiencing all of these things - seeing your child undergo all of these horrible and stressful treatments, combined with the drudge of sitting in an over-heated, dry ward for days on end - and you wait for the next time.  You don't let out these emotions.  You don't talk about it.  It's not over yet.

She said I need to vent.  This is it.

I wonder if, when this finishes, I will collapse?

The needles are a sore point.  Ha ha, pardon the pun.  My daughter is also Asperger's, which adds an extra difficulty to the treatment that she has to undergo.

She is scared of needles.

From her admittance in January, we started to count the needles, agreeing that she could be bought things when she reached certain totals.  This may sound horrible to some, like some grotesque incentive.  However, we did this because she regressed into a toddler state every time the doctor needed to draw blood or put a cannula into her for drips/drugs or transfusions.  We were trying to persuade her that good could come out of the bad.  The first few times she would get in my face and scream that she hated me.  This was fair enough, as I hated me at that point too.  Probably because I am her mother and I could not stop these things that she was terrified of, these things that had to happen.

It got to the point where they started to sedate her.  It did not help that her veins are incredibly awkward and they would always need several attempts to place a cannula. 

Leukaemia/cancer patients eventually have a permanent line put into their body.  This is internal and can either be accessed by a quick needle push (portacath) or they have a line that emerges externally (hickman).  My daughter had an operation to have a port put in after she finished the first 4 week induction phase of her chemotherapy.  They can't have it before, even though it is much easier than using a cannula to access the vein, as it is an infection risk at a time when the patient is particularly vulnerable.  

Instead, she had over 40 needles. When her arms became too bruised, she had them in her legs and feet.  

These are the things I have glossed over.  I have walked away and bottled up my daughter's arms being too damaged to take any more needles, and her having to have them in her feet instead.

She walked away with new computer games and a whole set of nail varnishes that she'd 'earned' through endurance.

Now she has a port, we put emla cream on it before she goes for a blood test or chemo.  This numbs the area.  It is then painless to put the needle through the skin and straight into the port sitting underneath.  It is just below her rib cage.  We are very thankful for it.

She did regress with needles; now she accepts them graciously.  Yes, they still frighten her and she still becomes upset when she needs one - her blood is still checked by finger pricks - however she is so mature about it.  She is extremely brave and I am very, very proud of her.  She has endured things this year that none of us would want to. Although, if it could be me instead of her, then I would do it in a heartbeat.

Please remember, when reading this, that although these things are brutal, they are a million times better than being left with leukaemia.  I remember when I was a child (which wasn't, I promise, that long ago) that getting leukaemia meant death.  The only person I knew, a boy a few years older than me, died.  The survival rate was very low indeed.  The treatments now are so much more advanced.  My daughter's survival rate is 90%.

Although, when you are dealing with your child's life, any percentage 'survival rate' is the scariest thing you will ever encounter.  As soon as percentages are involved, it is scary shit and you welcome any needle that might make them well again.


Whilst I took son to toddler Christmas party, daughter's Dad took her to clinic.

Her blood results have shown that she is once again neutropenic.  This means she has very little in the way of immunity from illness.  I am distressed by this as she's been off chemo for a fortnight to allow her body to get rid of a sinus infection that just wasn't shifting.  Her counts should be very recovered, not lower than they were!  So she's off chemo for at least another week.  All of this is a further delay in her treatment.  It also renders her vulnerable to other infections.  

Please let her counts come up.  Please let her stay well.  Please let us celebrate her little brother's birthday and Christmas together as a family in our home.

I bought a toy at our local Matalan as they were doing a collection to give out to the sick children at LGI.  I think I was trying to buy insurance that if I get this for them, my child might not be on the receiving end.  It's a bit like when I gave £20 to a colleague who was raising money for a children's cancer charity last year.  I think part of me did it through sympathy, and part of me was thankful it wasn't my child.  I suppose another part of me felt it was insurance - if you hand over the cash and show you care, your child will be immune.  Such shit.  Dare you turn down the cancer collector?  Is it superstitious like saying no to the traveller lady who knocks on your door selling hairbrushes?  You buy one because it is too risky not to.

Pregnant? Moi?

Someone thought I was pregnant today.

This is bad because it shows that I have comfort eaten enough weight on for someone to think me far enough gone to warrant asking when the baby's due.

However, it also made me broody.

I feel broody a lot at the moment.  It is completely impractical for me to have another child.  My focus needs to be the two I already have and getting myself back into work so I can continue to provide for them.  But, I often feel the baby-ache.

I think this is because in the midst of dark times and hopelessness, it would be quite nice to have something wonderful to look forward to.

Leukaemia is most common amongst 1-4 year olds (cruel, cruel illness that it is).  As people like to have a nice gap between their kids (unlike me who had 10 years between mine), then there are many mums on the ward who are expecting or who have small babies.  I cannot imagine how hard that is - to have a toddler going through these awful things, but to be expecting their sibling.

The other thing I feel where siblings are concerned is worried.  Could my boy get this evil thing too?  According to an American website, siblings are 3-4 times more likely to get leukaemia than children where the disease is not in the family.  I don't know what the odds of getting it in the first place are.  I know it is rare - although it doesn't feel it when you are sitting in a packed clinic or hospital ward.  Twins have a 25% chance of developing it if their sibling has it.  I'm not putting this to scare people.  I also cannot vouch for the truth of the source that I read this from.  It is me sharing my worry with this page.  My son looks pale.  Very pale at times.  He has lots of bruises.  (He is a week off 3 and crazy though!)  I have to restrain myself every day from taking him to the doctors and asking for them to test him.  He seems full of life and energy - something that my daughter wasn't when in the grasp of the disease.  I even dream about getting him tested.  Last night it cost me £230 in my dream to get him checked for leukaemia privately.  

I fear I am a bit mad, but this illness does that to you, I think.

This blog is me trying to work a few things out for myself, but it is also to share experience.  Some of the only people I feel I can communicate with are other parents who are going through/have gone through the same experience as me.  We are hard to come by though.  If anyone reading this would like to share their experience or ask me anything, please do.  It is comfort from strangers, but every bit helps in times like these.

So, the upshot is I am very fat, but I am not sure I can manage to do anything about it at the moment.  I keep starting diets then losing the will after a couple of weeks.  Food is my only crutch.  Christmas is coming.  The thought of nice things in the cupboards and spoiling my children rotten is keeping me going at the moment.

The very beginning

Every day I still pick up my work e-mail.  I read through all the issues and keep in touch with what's going on.  I think it's because I remain hopeful that I will go back.  It also helps me to feel less detached from what my life was last year, before all of this began.

It started with pains in her side.  She was walking awkwardly.  I took her to the doctor who told me that it was swollen glands in her stomach from an infection, and that it would pass.  This was early October 2010.  A week later she was still suffering, so I returned to the GP.  This time a different one said it was a pulled muscle and to give her ibruprofen.  

When this settled, she went on holiday to Egypt with her Dad.  She was violently sick there and ended up being hospitalised.  She had many tests done in that hospital.  It concluded an elevated white count and an enlarged liver - both signs, we now know, of leukaemia.  However, the body can react this way to infection too.

I took her to my GP when she came home, as she was still being sick.  He said it was the end of a tummy bug, and not to worry (this was nearly 2 weeks after the holiday).

I took her to school.  When there, I was summoned because she was sitting outside the medical room.  Her hands looked blue, and she looked so poorly.  By this stage, she was hardly eating and she was really wiped out all of the time.  I had a discussion with her Head of Year, who suggested I take her to hospital because 'you hear horror stories'.

I decided to give my GP another chance and asked him to ring me.  Strangely, he called just as we were returning home past the medical centre, so I swung the car into the car park, answered the phone and asked him whether he wanted me to bring her in to see him, given we were just outside.  He declined.  He told me to bring her back in a couple of hours with a wee sample as it was possibly colic.

I took her to A&E instead.

I am not somebody who likes conflict.  I always trusted my doctor and wanted to be fair to them - I am not somebody who goes out of the system by nature.  However, I have learned this year the hard way that if you are ever in doubt, go over their head.  With respect, doctors do not know everything.  I have since been told that many GPs will never see a case of leukaemia in a child during their entire career.  The symptoms can be vague.  My daughter presented, in the end, with swollen joints, lethargy, random sickness and a low white count (it dropped after Egypt and stayed low).  Many expect to see unexplained bruising or elevated white counts.  Things are never straight forward.

When we went to hospital, with the symptoms outlined above, they started to investigate her for Crohn's disease.  We started in the hospital in mid November.  We were still awaiting appointments by Christmas.  

I still do not know why her severe anemia - another symptom of leukaemia - was never picked up on her blood tests.  She was bright white and falling asleep throughout the day.  It was like having an old lady in the house rather than a 12 year old.  My parents took her to the pantomime in December and she stayed overnight with them.  When  they returned her home, my Mum was so worried about her.  She'd been complaining about shoulder pain, so they'd taken her to A&E for an X-ray, which showed nothing.  She'd refused to eat and taken herself off to bed in the early evening.  As my Mum was telling me this, my daughter was falling asleep on the sofa next to her - in the afternoon.

The next day I took her back to hospital.  The nurses commented on how poorly she looked, but the doctor in A&E said she was fine.  I cried.  I'm not a crier, but I started crying and he looked guilty and said he would ask the paediatric doctors whether they wanted to do anything with her.  The doctor from the Children's Assessment Team came in and abruptly sent us home to wait once again for an endoscopy that we were already waiting for.

Christmas last year was a somber affair.  We were at my parents' house.  She was tired, poorly, wiped out, had no appetite.  We were all so very worried about her.

After Christmas I couldn't return to work as I had a throat infection that had left me unable to talk.  I was sick in bed with a temperature, so I stayed away from my daughter who was still poorly.  In the evening on the 5th January, I went in to check on her and her eye had drooped down her face.  I thought she had had a stroke.

As I was ill, my husband took her to hospital.  Finally, they agreed to keep her in.  They started a number of tests over the next few days, then allowed her home at the weekend.  At this stage, the consultant, who was wonderful and reassured me that they would settle this once and for all, still felt it was Crohn's.  Various other consultants from different departments agreed with him.  When she returned on the Monday they asked to repeat blood tests as something unusual had turned up in the blood, but they felt it was because the sample was so small.  My daughter is very difficult to take blood from - more on that later, I think.

We were once again sent home, on the 10th January, to wait for the endoscopy the following week.

Teatime on the 11th and the consultant phoned.  We had to go back to hospital - LGI - to Ward 76 immediately.  He would wait for us there.  He couldn't discuss anything over the phone.

I couldn't drive.  The hour waiting for the taxi was one of the longest of my life.  I tried to ring my Mum, but she was in that limbo between leaving work and arriving home.  I rang my sister in tears.  I text people.  I was panicking, waiting.  Daughter was also upset as we obviously knew something serious was up.

When we got to Clarendon wing, I saw the signs straight away.  Ward 76.  Children's Oncology.  I know what Oncology means.  My Mum and my sister work in hospital.  I watch Grey's Anatomy and House.  You can't confuse people with medical names so much these days.

We were greeted by a nurse who took us into a bay.  I had contacted her Dad who was on his way.  Usually, when your child is first diagnosed with cancer, they let you have a side room.  Unfortunately, it was sick season because it was January, so illness abounded.  We were put in a bay with two other families.  Both girls were well into treatment - they had no hair.  One had a feeding tube.  We knew what was coming.  (They were both wonderful families, by the way, really supportive.  It must have been difficult for them too, having to be there as we found out what was wrong with our daughter.)

The nurse took us into the treatment room, with the consultant from Children's Medicine.  It was there that he told us that it appeared my daughter had leukaemia as they had seen the blasts in her blood.  They would do a bone marrow the next day to confirm.  My daughter wept.  

I thanked him.

He said nobody had ever said thank you before.  I told him it was because at least now we knew; it was the end of a three month slog of sickness trying to get answers.  It's also because I am inherently polite.  I am actually appalled at myself that I didn't scream and rage and weep.  I'm too stiff upper lip for my own good.  I am still disgusted with myself.

If you have made it through this beast of a post, thank you.  I will tell you more later.  I'm sure you could do with a rest.

Wednesday, 7 December 2011

My first entry, nearly a year late

It's been nearly a year since my daughter was diagnosed with ALL.  We found out on 11th January that they had spotted something in her blood that was suggestive of leukaemia, after three months of nasty, unexplained illness.

Why has it taken me a year to start writing about it?  

Perhaps it is because I am a private person.  I have swallowed my emotion, both metaphorically and literally by comfort eating my way up by 2.5st.  I haven't voiced very much to anyone about my situation.  I've continued with the pretense that all will soon be normal again, and this is a blip.

I've bought into the suggestion that by the time she reaches the maintenance stage of her 2.5 years of chemo, life can go back to normal.  She can resume school, I can resume my job, heck, even my career.  Life as we knew it will be back and we can all sigh in relief and make sure that we attend her monthly medication meetings and get her blood checked regularly.

Unfortunately, this is not the case.  We have continued to be in and out of hospital; we have continued to be living this life of cancer.  

Cancer steals life.  Not just the life of the patient, but the life of all of those surrounding them, caring for them and trying to live with them.  My two year old has nightmares; he's frightened that each time I walk out of the room I'm going to hospital and he won't see me for days.  He is clingy with his need, and I rarely have the energy for him.  My life is housework and prozac.  My husband walks on eggshells around me, and watches me crumble a little with each day that passes but cannot do anything to make it better.  The grandparents are fretful and worried.  As are the relatives.  

Life is held here; it's as though I've taken a deep breath that is yet to be released, nearly a year on.

There's all the things you dare not say.  Death.  She could die.  Instead of speaking the words, you vent them or you consume them.  Many parents are heavy smokers - ironic, but completely understandable; I've had to fight the urge to return to cigarettes myself.  Some drink.  I am scared to even have a glass of wine as once begun, I'm not sure that I could ever stop.  I eat.  So do others.  The hospital ward has a stack of takeaway menus so parents can order in.

So, this blog is my catharsis.  It is my attempt to reflect on what has happened to us, during this long, slow, painful burn of my daughter's leukaemia.  I'm going to stop pretending it's all fine.  It really, really, really isn't.