The Acute Lymphoblastic Leukaemia Diary

Readers

2014-03-02T13:14:00.001-08:00

It's been a while, mainly because I am trying my hardest to get us all back on track after what was the most horrific three years we've had to go through as a family.

It's been nearly a year since daughter finished chemo and she is gradually getting stronger and happier.

I am busy and I may not be on forums regularly now, but I am still here. If anyone does need to ask anything or just wants an ear for difficult times, I will always make time for you.

I started a new job in January and it is relentless, but much happier than my last one. I promise to update properly soon.

If you ever want to ask me anything

2013-04-08T00:28:00.000-07:00

I know that a few people read this. If you are ever here looking for information about anything or for a particular experience of something, just leave a comment. Even if I can't help, I might know people who can.

Crawling to the finish line

2013-04-08T00:24:00.001-07:00

So we have just over a week of chemo tablets to go.

Daughter had her final spinal chemotherapy and bone marrow last week. We haven't heard back from the bone marrow, which is a good sign.

We have to have a meeting with our consultant to talk through what happens next, though I'm aware she will remain a patient for at least 6 months.

I'm starting to actually look forward to our holiday now, even though I still have to try and find some travel insurance for us to go. We have certainly earned it.

These past few years have been really, really tough.

Today is the day then

2013-03-27T21:57:00.002-07:00

Today she has her final spinal chemotherapy and bone marrow aspiration to make sure the leukaemia is definitely gone.

I see no sign of the disease now, although we are all a little nervous still I think.

She has another month of chemo tablets to take, then she's finished. Next, we attend a big meeting about what happens in the future. I know that for the next six months, she will still be considered very low immunity and be under the care of hospital.

I will be very glad to see the back of chemo, but also very thankful that it has saved my daughter's life.

10 weeks to go

2013-02-14T22:28:00.002-08:00

We are on a 10 week countdown to the end of treatment.

Keep everything crossed that her final bone marrow will show that she is finally clear of leukaemia.

I am very much back at work at the moment, hence my lack of posts.

Ah, so that explains it

2013-01-13T02:24:00.003-08:00

Daughter was diagnosed with Influenza B on Monday, which did explain why she was feeling so shocking. However, she was a bit miffed that she'd had to have a flu jab that didn't work.

She came out of hospital on Wednesday, but she had to go with her Dad so that I could work. I've not seen her since, but she is apparently still feeling very, very tired. I suspect it will be a long time until she feels more normal. It will not help that she is due to have vincristine and have blood taken off her this week, which I think will really wipe her out.

I'm struggling with all of the things that I have to do. There seems to be so little time and life is relentless. I could sleep for a month!

Trying to run a house and family, work full time and deal with a child with cancer really takes it out of you.

Oh, for a fortnight in the sun. By myself. ;-)

Influenza B

2013-01-08T10:35:00.001-08:00

We have a diagnosis then.

It's amazing - as soon as they said flu, it all fit into place. We just didn't look for it as she'd had the flu jab. She's through the worst now, but she's still in hospital for another day so they can make absolutely sure that her temperature stays constant. Then she will go with her dad. She's so weak, and I think it will be some time before she's more normal. This will not be helped by the IV chemo that she is due to have next Thursday.

I am feeling so fed up for her, and for us as a family.

I am wishing with all my might for a windfall so that I could take some time away from work and care for her, rather then shipping her off to her dad's because I've missed too much time and I can't afford to take more.

I am feeling run down, tired to my bones and like a dreadful excuse for a parent and employee today. Once again, I can do no right.

:-(

The NHS - I feel like I am walking through treacle.

2013-01-06T22:43:00.001-08:00

I am so tired.

It is like we have been transported back 18 months with some of things that have been happening.

As far as hospital is concerned, because daughter is so far into maintenance chemotherapy she is considered to be at low risk. At low risk of what, I'm not sure. But her low risk-ness has not stopped her being very, very poorly over the past few days.

She has run a fever for over 3 days now. They give her a paracetamol which brings her temperature down a bit, but then when the paracetamol wears off, it shoots back up. She's never had a temperature this long in her treatment. She's already had a week of oral antibiotics, and now 3 days of heavy duty antibiotics. She's been very sick, and I've been transported back to some pretty heavy going caring duties.

(NEVER do give paracetamol at home though, cancer parents, unless you have consulted your hospital as it masks temperatures and if you are at home and dose them, you can hide fever which is a serious symptom, especially in neutropenic patients.)

Unfortunately, there was no room in the teenage unit for daughter, so we are in isolation in the children's ward. They are so overstretched, and I am once again finding myself frustrated over her care. I know this is not their fault, but it does not make it any easier to be on the receiving end. Some total idiot in management has decided to cut 3 beds on the unit, essentially removing a nurse. The problem is, the unit is always full. Daughter sent them over numbers, and a night into her stay they were full with 6 more patients coming in for treatment. Management might think this is just a fluke, and that it will drop off again. Except, I have been on this ward at all times of year and it has always been full. The nurses say the same thing.

Let's hope the person that made this decision never be in a situation where their immuno-suppressed child is left sitting in their own waste whilst their parent tries to frantically sort them out in a room with no curtains to protect their teenage modesty, and nobody able to stay longer than 2 minutes to help as they are too busy with far worse cases on a children's cancer unit, eh? Maybe if they diverted some of the funds that they spend on infection control posters into nursing staff, they would find that infections decreased.

I work in education, so I am always amazed at what government controlled institutions, like the NHS, can find money for when the one thing that none of them ever seem to be able to afford is more on-the-ground staff to make the whole experience so much better and safer for everyone. Buffet lunch at the meeting, anyone? Artwork for the offices? Let's employ another twelve matrons/leaders/mid-ranking managers on 40-60k salaries who do nothing hands on, but are very good at directing all the people who do to spend even more time filling in pieces of paper.

It was crazy, I was running around trying to get help, accutely aware that last time daughter became seriously infected it was a life or death situation, but the doctors were too busy doing paperwork (I'm not stupid, I know this is important, but surely there should be a rank system in terms of urgency?), and I saw some of the nurses making patients' breakfasts. I would have thought having a healthcare assistant to do that would be a better use of resources. If daughter ends up critically ill, that must be more expensive to the NHS that employing someone on a Sunday to make the toast?

I have relatives who work in the NHS. Everyone know it is SHIT if you are in there ill on a weekend. I was told I couldn't have an epidural in labour on a Sunday because the anesthetist would not be available, except in emergencies.

Britain: a national healthcare system not to be beaten, 6 days a week. We all rest on a Sunday, and that includes you, sick people.

I am hugely appreciative of National Health. It should be global. But I am not hugely appreciative of the people taking home the massive salaries who make decisions on how to run it, who seem hell-bent on running it into the ground.

Anyway, I must go. I am sorry this is a rant, but anyone who has spent as much time in the system as me would surely start to see the very obvious flaws.

Nurses, I salute you for having to work in the conditions that you do. I am sorry, it should not be like this for you. If I was the emperor, you would have far better pay, there would be better working conditions, and you would not have fifteen bureaucrats above you making your job increasingly ridiculous. They would be too busy being trained to give practical help and lending a hand in the busy times...

Back in hospital

2013-01-06T01:16:00.001-08:00

We came in on Thursday night as daughter had a fever and had been confirmed neutropenic earlier in the day.

We've had a very rough couple of days where she has run a fever in spite of medication, and been sick also in spite of medication.

I am just hoping that they work out where this is all coming from and that we see a change in her today. She's now on some IV antibiotics after they kept changing their minds about what to give her.

Hospitals are not much fun, and I am carb-loading like a marathon runner. Stress is the enemy of my diet.

Worried, tired and wishing this wasn't our lives.

Eek

2013-01-03T02:52:00.002-08:00

7 months until we go to Disney, and I have so much to sort out between now and then.

We are staying here:

http://disneyworld.disney.go.com/resorts/animal-kingdom-lodge/

It looks amazing. It is our 'once in a lifetime' holiday to celebrate daughter finishing chemo.

I am lucky I have not had to sell a kidney to pay for it.

Yet.

Gah

2013-01-02T02:05:00.001-08:00

We are home and facing one of those days where I have to find homes for the ton of stuff that we got given at Christmas. I am sure it multiplied in the car on the way home.

The district nurse came at 8am to take daughter's bloods. She has a check mid-month to make sure that her chemo doesn't need adjusting. This was a bit of a shock to the system as we've all got into that dangerous habit of going to bed at 12 and getting up at 10 or 11. Normally, we settle in at 9pm as husband has to be up at 5am. Last night was interesting - lots of under-the-breath swearing as he couldn't get to sleep. Then you fall into that dangerous pattern of over-thinking why you can't sleep, and counting down to when you need to be up. He must feel pretty shocking today. I struggled and made myself get up at 7, and now I am procrastinating as there is so much to be done, but I'm tired and want to sit on the sofa finding creative inspiration and doing as little as possible.

Daughter had her bloods done and went back to bed. Ah, to be fourteen with none of the responsibility.

I managed to do a little crochet yesterday in a nod to my do something creative every day. I will make some time today. If I manage to get sorted out, I might get a chance to open my sewing machine. I must admit, I am a bit afraid of it. I am a complete beginner and my brain struggles with new things at the moment. However, I am determined to learn and now that I have a shiny new machine, I have no excuses.

Approaching the new year

2012-12-31T04:49:00.002-08:00

2013 will be the year that daughter finishes treatment. She will have a final bone marrow in April to check the disease has gone, then that will be it. Done. 2.4 years later.

Then we pick up the pieces of our lives.

It is interesting to me that people keep giving me 'lucky' things. I have been given lucky trinkets and a beautiful little waving cat that I think is Chinese, and I am now the proud owner of two rather splendid laughing Buddhas. I have been told that I need to feed my Buddhas in order for them to be lucky. That figures: I don't function brilliantly without food either.

I have been on a bit of a journey this year. Having something so dark happen to your family forces you to reassess. I hope that you aren't reading this and eyerolling at how cliche it sounds. It is cliche, but I am finding it is because it seems to be the truth.

I have been reading self help books and popping ADs, I've even delved into the muddled depths of spirituality. One thing I am noticing is that many branches of thought -whether mindful and rooted in the present, goal-orientated and aspirational on a material level, or tapping into the wavelength of some higher authority through religious/spiritual connections - all regard people as more fulfilled when we are being creative. We do best when we are making things. I see truth in this too. (Don't laugh.) I taught myself to crochet this year and it has been very soothing to sit and hook through some difficult times. Last year, I really enjoyed making little felt decorations in hospital with daughter when she was in with a nasty infection just before Christmas.

Of course I am not saying that your child has cancer so you should take up knitting and all will be well.

What I am trying to say is that having bad things happen to you takes so much away. Sometimes it is nice to try and put some things back for yourself. The things that you make aren't of comparable value to what is happening, but the process of creating something is another therapy, another thing you can do for yourself to weather the horrors around you. Leukaemia treatment is a slow, painful process. It is nice to feel like you can do something, anything, when most of what you feel is powerlessness.

So, I am being creative. My new year's resolution is to try and create something every day. I am not promising to be faithful to this if anything else bad happens - I can only come to this resolution 2 years down the line. I would not have been able to do this in the early days . I couldn't even read a book in hospital when she was first diagnosed as my brain would not let me. This is the end of our journey (I pray) and us moving on from this thing that has tried to take away so much of us.

I have been bought a sewing machine for Christmas, and I haven't ever really learned to sew properly. I also write occasionally. I am looking for something to add value to my life as I feel fed up a lot, and these past two years have shown me that getting all of my sense of accomplishment through my job is unhealthy. I could lose my job in a heartbeat, and where would that leave me? (This is not about my family - of course I love and enjoy my children, but I have always wanted something for myself too.)

Hoping 2013 is a kinder and more creative year for all of us. Happy New Year.

Back to work and hairy issues

2012-12-12T07:08:00.001-08:00

I have returned to work, thanks to medication and a rest. I am hoping that this time will be better. I am still very up and down in myself: the stress is working its way out. I have been living on edge for months now and it has finally taken me over. I think I am on the mend though.

Daughter's chemo is now at 75% of a full dose as this is all she can tolerate without her counts repeatedly dropping below what they need to be for her to keep taking the pills. She is looking a little better and her hair is crazy now. It is very dark and thick, and difficult to tame. She loves having it back though!

Last week we were worried that she was losing it again - this can happen, even later into maintenance chemo. However, we think it was just the fact it is longer now so when she naturally loses it it is more noticeable. I am relieved as I wouldn't want her to have to go through that again.

4.5 months to go.

Today I am grateful for:

Leftover mushroom stoup - yum.
All those kids I know ;-).
My excitable 3 year old getting mentally prepared for his birthday.
Nurse Jackie - I bloody love Nurse Jackie, although I am sad that the season has ended.
Crochet. I taught myself in Summer and my first big project (after the one I rejected part way through) looks like it is coming together. It is bright, colourful and soft. I love it.

I am not grateful for the fat cat who has taken up residence on my ironing board. So, I have a hairy daughter in the best possible way, and a hairy ironing board in the worst possible way.

The cat is looking very pleased with himself.

Remember when I said I was grateful...

2012-12-08T03:09:00.001-08:00

... for my parents picking the children up and taking them away so I could crack on with the Christmas prep?

Remind me of that in a couple of hours when I am firmly into present wrapping territory!!

It's also son's 4th birthday on the 16th and we shall be descending into overcrowded, chaotic soft with approximately twenty 1-6 year olds merely 9 days before Christmas. It will be mental. I will need to lie down afterwards.

Daughter won't be allowed to come to soft play. Don't pity her, she is nearly 14 and is much happier at home. I am a little jealous! It is too busy and we want to avoid big crowds near Christmas so we don't risk her catching an infection and being an inpatient over the holidays.

This year we are going back to the parents, over an hour away, for Christmas so am hoping that 1) she stays well and 2) it doesn't snow. Driving there in snow a couple of years ago taught me I never, ever want to do that again. I am a snow wuss.

Hoping everyone else is enjoying (ha ha) their Christmas prep. If we manage to get on today, I will be treating myself to Christmas Market - without nattering children - and hot chocolate tomorrow, followed by Christingle.

I am not religious, but I love the Church at this time of year. I see Christmas as a time for gratitude and reflection, as well as hope for the year ahead. I also think it makes me feel part of something bigger, and that often gets a bit lost among the present buying/food shopping/wrapping/celebrating. I like to be connected. Without wanting to sound trite, I am someone who hopes I show that I genuinely care about other people and I try to be a good and kind person. Being in a place with peace, and candles, and community where we remember a figurehead for this - real or not - is a nice reminder of my values. It is also a bonus that son will still be with my parents so I will not have to beast-wrangle for the duration of the service as I did last year.

A peaceful and joyful pre-Christmas weekend to you all. May your present wrapping be swift and painless and your Baileys' glass full.

Gratitude

2012-12-06T08:00:00.003-08:00

I am trying to drag myself out of my miserable place. One way is daily gratitude. Yes, things are pretty shitty for us but I have to remember what we have that I should be grateful for.

So,

1. My children sitting with me, lit by twinkling Christmas lights, in a warm home watching a film together.

2. Good food cooking on the stove for tea later. (Vege stew, yorkshire puddings and quorn sausages. One of daughter's fave teas.)

3. My cats going insane for the new catnip toy I bought them, that was supposed to be for Christmas but they were after it the moment that I brought it into the house earlier.

4. My parents are picking up the children tomorrow so that husband and I can have a weekend together prepping Christmas. I am very excited about this, even though I am paling a little at the number of presents I will be wrapping by myself. I've no doubt that husband's contribution will be tea-making and mince pie consumption. I might go wild and have another Baileys.

5. Baileys. I am very grateful for that. With milk, over ice.

6. I am also very, very grateful for mince pies, although I am not sure the scales will be when I get weighed on Saturday at Slimming World.

7. Mumsnet. I love it, especially the wonderful people who try to keep me afloat on the children with cancer thread. I started it nearly a year ago now. Part of me is sad that there is a need for it, but I am very grateful for the company of some amazing women on there. Strangers brought together in adversity, sharing the best and worst of times, there to listen to things we can't say to our nearest and dearest. I am praying for wonderful Christmases for all of them, that their children get some respite from illness so that families can be together in their homes, where they belong.

I have a lot to be grateful for.

Being forced to reassess

2012-12-01T09:40:00.001-08:00

We are approaching the two year mark since diagnosis, with 5 months of treatment remaining for daughter.

At the moment, she is worried as she seems to be losing hair from the sides of her head. I know it is possible to lose hair again later in treatment, and am praying this isn't happening. Her hair is finally growing down around her ears so it is the longest it has been since the beginning. I'm just hoping that the hair loss is normal, but more noticeable to her because of its length now. She's already lost her hair twice and her eyelashes several times. She also gets a huge amount of grief at school: 'is it a boy or a girl?' being a daily occurrence. Teenagers can be such a delight.

This whole situation has hit me hard, and I have finally given in to some pretty serious anxiety related illness. I'm currently dosed up on a different AD and trying to settle down. It is making me have an existential crisis. What do I really want out of life? The places I was heading to and the things I wanted to achieve have been swept away and it has left me feeling quite down.

Don't get me wrong, the most important thing is always, and has always, been my family. If I lost everything, it could be replaced, but daughter couldn't. Many parents also lose their own health during this time, and I have been told many marriages fail when a child goes through cancer treatment. I can understand it as it does change you all. I am very, very lucky to still have both my children, my health - to an extent, and my lovely husband.

However, I can't help but feel very sad that our family will be punished for years to come because my daughter has had this illness. I have already lost earnings and potentially could lose a lot more. I have already taken a backwards step in my job and now might have to take another. I am scared to death that in a profession that favours the young and dazzling, I will be left behind and never get back what I'd achieved, let alone move on from that. We should, at this point, be doing really well financially and we should have been able to move out of the house where we live into something bigger. Now, all we have is a big mess to sort out.

So, I am looking for a readjustment, a rethinking of how I view my life. I've even been searching out some spiritual advice and have found the writing of Eckhart Tolle very helpful. I am trying to be more mindful and trying to stay in the present. Perhaps me fighting against the inevitable is what has made me ill, and if I just tried to accept and act as things arose, life would be easier for me, and, in turn, my family?

I've also found a lovely counsellor and it is helping me to see I still have some choices in the situation I am in, even if they aren't all easy ones.

Anyway, I will leave you to enjoy your Saturday evening. The Christmas tree is up, and son and I are watching a naff reindeer film by the twinkling tree lights. THIS is what matters. (But I'll still hope for that lottery win.)

Even if you cannot hear my voice

2012-09-30T06:09:00.000-07:00

For those who have not survived this year. For those we loved and have lost. For the parents who will never hold their child again.

http://www.youtube.com/watch?v=jS8IZcx7tJY

I have linked to this in a couple of places. It is a song that, when I hear it, makes me think of all of us, huddled in hospital bays, praying that our child will get better. It is cannulas in feet when there are no more veins in arms. It is feeding tubes. It is bone marrow transplants and months in isolation. It is what we go through, sitting by their side, hoping. And sometimes that isn't enough.

Much love to all of you, and such, such sadness.

The end of childhood cancer awareness month. Please be aware, please don't be fobbed off by inadequate GPs or dismissive consultants. If in doubt, FIGHT.

False Sense of Security

2012-09-20T03:21:00.001-07:00

I think we have been lulled into a false sense of security by a couple of 'normal' weeks. I've been working full time, as normal. Daughter has been managing a more 'normal' couple of days at school. Son started nursery. Husband working. Everything as it should be.

And then, she comes home on Monday from her Dad's with back pain, it hurts when she breathes in, and she needs checking over at hospital - is the chest infection coming back? Are we setting off on the road to pneumonia again? They think it's just the chemo. Everything is just the chemo until her temperature spikes, her counts drop and we are back in hospital again.

Then son starts vomiting with a bug he's picked up at his new school. And husband has to use his last days of holiday/unpaid leave to stay off, to try and keep me in work (He hasn't had a holiday this year at all - all time off was to cover illness). But we are now on Day 3 of the bug, I am off as husband has got to go in. Daughter has been taken back to her Dad's to get away from sickness.

I am feeling fed up, like we are on the precipice of things going downhill again.

I managed 13 days in work without a day off.

7 months of chemo still to go. I just hope I am still sane at the end of it all as the continual worry/guilt/sense of failure is taking its toll.

Difficult silence

2012-08-31T14:37:00.001-07:00

We have lost many children over the past few months who we'd met through hospital.

Just now I have found out another girl, who was on the ward when my daughter was first admitted and given her diagnosis, has passed away.

She was doing so well too.

I am devastated.

Her Mum was so kind to us. Imagine how it must feel to have to share a hospital bay with a family who have just been told their child has cancer. She was so very kind, and thoughtful, to us that evening and her daughter was a very brave girl who had been through so much. I will be forever grateful to her Mum for those early days we spent in hospital. And I cannot believe that she, too, has now been cheated out of her child.

This thing is horrendous.

And why is this post called 'difficult silence'? Because she passed away a couple of weeks ago and we didn't know. Because we don't get told. Because nurses and consultants and hospital staff have to maintain this difficult silence of confidentiality. We become like a little community, and the only updates come via the grapevine.

Don't get me wrong, I completely understand why they protect the patient and their families.

It just makes me so sad that we couldn't do anything at the time to show how sorry we are that she has gone.

How we have changed

2012-08-24T02:09:00.001-07:00

We are ticking on along nicely at the moment.

Husband and I had a conversation the other day about how cancer really has put us on a different path.

In terms of work, he was looking for opportunities away from where we live now. This could have resulted in a move. I was on the path to a job with much greater responsibility and pay. Thanks to Money Saving Expert (which I can't recommend highly enough for people struggling with money/debt) we were on track to sorting our finances. We were giving serious thought to having a third child.

Now, money is chaotic. I'll be honest, I struggle to get a grip with it and can be very over generous with the kids and family. I am trying to reign this in as I need to save for holiday next year. I am trying desperately to keep the job I have, let alone get a promotion. That won't happen whilst we are still on treatment, and not for a while afterwards. Husband feels unable to apply for jobs further away in these uncertain times. I don't think baby 3 will ever happen now. I am tired to my bones. This makes me feel so incredibly sad.

It feels like we have had so much taken from us.

Of course, I am grateful we have a house, and an income. And most of all, I am grateful that I have two children here with me. We can hope for good health in the future.

I would still rather it had never happened though.

Teenage Cancer Trust

2012-07-06T10:22:00.000-07:00

Please sponsor this wonderful lady as she runs in memory of her daughter:

http://www.justgiving.com/Billiegirl

Advice for parents of newly diagnosed children

2012-07-01T01:05:00.000-07:00

This is advice for parents of newly diagnosed children. These are some things that I have learned:

Seek out some support for yourself where you can be completely honest about how you feel: you will hold back your fears, around your child (of course), but possibly around relatives too. If you want to question, and deal with what-ifs (if you are that kind of person, some of us are, some aren't) then you don't need to be told not to think about that, or to stay positive. It can help to have somebody who will listen to your fears. Voicing them will not make them come true. But it might help your head. We were given a CLIC Sargent social worker, who has been wonderful support for us. But, a counsellor could also be helpful. See your doctor. Or, find a spiritual ear. All hospitals have non-denominational chaplains to talk to.

In fact, see your doctor anyway. You will need that kind of support. As time passes, you may need sick notes, or help with forms, let alone any medication that you might need. I'm not saying that this is a given, but please remember pills (sleeping/mood) are there if you do need them.

For the stay in hospital you need plenty of water to drink and hand cream. I dried out so much from alcohol hand gel that my hands got covered in a big rash which cracked and bled. Not much fun. Also, try and get out for some air at least once a day. It is scary to leave - especially if you are waiting for doctors/treatment/tests/test results - but the nurses are there, and possibly other staff - like social workers, play workers, etc - so try and get yourself a break.

Keep a notebook. You will get told different things by different people. For me, it was the most difficult and frustrating part of being in hospital. I was sharing care with her dad, and each time I'd come back in, something different had been said. For example, a consultant would say, she needs a transfusion, then Sister would come along and say they couldn't do it that night, so they'd wait, then she would order blood tests and say she didn't think she needed one (even though counts were same and consultant wanted it doing), then consultant would be back two days later wanting to know why it hadn't been done... Believe me when I say, I fought and argued, but you get sick of being looked at like the difficult parent. And I could have taken it further, it is easy to think back over the things that happened and say, I should have complained (the example I gave is mild), but you feel beholden to these people, you essentially have to live there, and the next thing always comes along before you get a chance. I should have written everything down, so I could clearly argue my case should I have chosen to. It would have given me more control in a situation where I felt powerless; it would have given me a record for when I wasn't there (if dad had done it too), and it would have been helpful to have my own notes to look back on as treatment progressed.

If you do need somebody to speak up for you in hospital, contact PALS. Every hospital should have this patient liason service. They are there to act as a mediator if you feel staff aren't listening to you.

Get ear plugs. I wish I had. Hospital bays are very noisy places at night.

Take some creature comforts for you: your own towel, perhaps your own pillow and blanket. We bought a mattress topper from Argos to cover the fold-out bed. It made it a little better.

You should be entitled to DLA. Get a form, get somebody to help you fill it in. This will enable you to apply for a blue disk later if you need to. It is extra money, it is disability benefit. Forget how you feel about claiming benefit, if you are against it, as you will need it. Hospital stays get expensive. You will miss work, and if, like mine, your child has leukaemia, treatment lasts for a long, long time. People's sympathy does run out, and days off become unpaid quite rapidly. Apply for everything you can get.

Charities can also give you some financial support. They raise money to help people like us: it is the reason they are there. If you need some more help, ask them.

CLIC Sargent also have volunteers. When you get home, if you need someone to stay with your child so you can go to an appointment/the shops/just have a rest, then they have CRB checked volunteers who can do that for you.

Obviously, you will tell your employer, but tell your union too. If you aren't in one, and can be, join one. You might need their help in the coming months.

If your child has leukaemia, which is a critical illness that lasts for longer than 12 months, you are covered under the disability act as their carer. This is important to know for entitlement at work. You are entitled to 18 weeks off, unpaid, and this can be taken as daily increments, although you are supposed to give 21 days' notice. But, you are also allowed to take 'emergency' dependent's leave. A reasonable amount. What that means is unclear, but you do have some rights and protection from the law. I hope your employer is compassionate and stays compassionate, but in case they don't, you do have some support. If you don't have union, try charities or your social worker. And remember you might have legal advice through your home insurance.

This sounds quite serious in places, but these are all things that I have worried about or encountered over the past 18 months. If I think of more, I will update.

Side effects?

2012-06-20T05:18:00.002-07:00

Daughter has become swollen. They've put her chemo up to 80% and her counts have plummeted. We are at home waiting the results of lots of tests. They are looking at her thyroid, her kidneys and tomorrow she will have an ultrasound of her liver. She had a scheduled MRI at the start of the week to test the state of the iron overload she has in her blood - whether this is affecting her organs.

They have to have the medicine, but the medicine is dangerous.

I keep looking around me and wondering how the heck this is now our life.

Update

2012-06-11T13:52:00.002-07:00

I've not posted for a bit because it is difficult to at the moment.

Daughter's chemo was reduced because of repeat infections. She's been better in herself, but her counts are now higher than doctors would like, so dose will be going back up. It is a roller coaster of numbers; a fine balancing act trying to get them in the correct range.

I can't talk about work now. I have to go; I wish I could afford to stay at home. The guilt is difficult and the pressure is starting to make me ill. I do wonder where I will be when we finish treatment in a year.

It is a long, hard slog, the treatment of leukaemia. It is always there, being a darkness in the corner. However normal I can pretend life is, it is only ever for a minute.

They say we have the worst of times and the best of times. I hope this is her worst of times. She deserves to live a charmed life from this point onwards, after all she has endured.

Sending love and best wishes to you all.

For my friend

2012-06-11T10:02:00.001-07:00

Please have a look:

http://www.youtube.com/watch?v=wKvqp1LILRM&feature=g-upl