Pneumonia and a very sad loss

We are on day 6 of the very heavy duty antibiotics.  It seems that daughter's temperature has calmed down a bit, though her chest is still very noisy.  She does have pneumonia, so she is going nowhere until we know it's beaten.


A girl on the ward died.  We knew her and her mum.  I held up in front of daughter, but as soon as I left hospital to come home (it's her dad's turn to stay), I cried all the way back in the car and for a good couple of hours after that.  She was a child - a beautiful girl with everything in front of her.  She had fought with this illness for years.  It is so very cruel.  


My thoughts are with her family and her friends.  I am very, very sorry for their loss.  

Tough time for cancer parents

I catch myself on the verge of tears all the time with things that don't normally bother me, and that's on the 40mg of prozac!

One thing I will say is that we have had a horrific time. It's like at the moment, hospital downplay it so you don't feel like it's that serious. But the reality is DD has febrile neutropenia and pneumonia, 4 bags of blood, 1 bag of platelets, feels shite, keeps throwing up in spite of anti-sickness, backache and headache requiring codeine. It is pretty serious. I feel like a zombie at the moment, I'm so out of my head with lack of sleep. 

We are chugging through these experiences for months and months with our children. I'm surprised more cancer parents don't have total breakdowns when the coast is finally clear and you are allowed to focus on yourself again. It is a toxic situation: we are storing up untold amounts of stress. I keep dreaming about the time DD had to have cannulas in her feet because her arms were too bruised to take any more. It's shit. But you repress these experiences and don't deal with them because the next thing to worry about crops up before you get a chance. 

Update

We are very much in hospital then; they are testing her for a number of things including pneumonia. They've told me not to worry, but she is feeling pretty grotty and every time the paracetamol wears off, her temperature shoots up. She has what is called febrile neutropenia, which is why she has to stay in. They have yet to get to the bottom of what is causing it. 


They are currently loading her with antibiotics and taking loads of blood samples. I'm still waiting to get a date for an MRI of her organs in relation to other new condition she might have, so I might try and wangle that whilst we are here as it's more likely to get squeezed in if she is an in-patient. 


On the plus side, after 3 bags of blood she is looking much pinker, and she's having another one tomorrow so she'll be practically glowing by then!  

Blummin bugs and chest infections

So, the bug that daughter had has persisted beyond 10 days of antibiotics and once again we are back in hospital.


They think she has a chest infection.  Her temperature had gone up to 40.4.  They want to do an Xray, but we have to wait until all the drunks have gone from A&E.  Doesn't it make you despair?


I think we are looking at at least 5 days in on IV antibiotics (the routine for patients if they have infection and are neutropenic, which daughter is again at the moment).  


I've had two hours' sleep as I was doing work until gone midnight.  Joanne Blogger: surviving on tea, pizza and sheer bloody determination since January 2011.

Race for life

Just because it helps me to feel like I'm doing something:

http://www.raceforlifesponsorme.org/team-abigail

A glimpse of what it is like

When they are ill enough to be in hospital, it is clear cut, but when you are trapped in that limbo of normal temperatures but feeling really rough it is so difficult to know what to do.


Daughter went to stay with parents on Saturday.  We stayed overnight too, but came away Sunday morning.  Left son too.  My Mum works full time, so has precious few holidays to spend with them.  Phone call on Sunday night at 8pm to say daughter was running a very high temperature.  So, 2.5hr round trip to pick her up and take her into hospital.  She was finally allowed out at 2.30am as counts weren't too bad and temperature had dropped.


I went to work on 3 hours' sleep on Monday.  (I've also done a total of over 20 hours from home on evenings and weekend since Friday, so a very, very busy week.)  Worked Tuesday too, only to get call from hospital to say that a bug has grown in cultures taken and she will need antibiotics.  Is she ill enough to be admitted?  They ask me.  I'm so very qualified to make that decision!  I say, she's been well enough to leave at home, just very tired.  So, 1hr round trip to hospital to collect a course of antibiotics for next 10 days and she can stay at home.


Get up this morning to get ready for work (I don't get paid for days off), and she looks shocking.  I can't leave her here all day by herself.  Maybe she will need to go in after all.  Temperature is still normal though.


I run into work quickly to drop things off.  And I am so jealous of everyone who can take for granted how they park up, come in, work a day, get paid, go home, work or relax or spend time with their family (their call) and not have this constant grey cloud hanging over them.  The continual worry.  Am I letting her down by going to work?  How will we pay the mortgage if I don't go to work?  Am I letting work down by staying at home?  How will I ever catch up and get back on track, as when this is finally over so many pieces will need picking up and putting back together.  We have to regather this fragmented life.


And poor husband is already on 10 days off.  That leaves 15 for the rest of the year.  Will that mean, once again, no break for him?  Our life is one big sickness and it is unrelenting.


Clinic tomorrow though, and waiting for news on liver.  They want to MRI her (again, I think this will be 3rd or 4th now) to check her heart.  Worrying.  Hopefully they will shed some light on what is happening.


I am going to intersperse this blog with jokes or pictures of Garfield as it is far too gloomy.  Sorry.  Big fat pity party.


 

Bad juju?

I am once again starting my day having to phone in work.  Daughter has some kind of virus; she is feeling really wiped, sick, and her temperature has been creeping up.  I need to keep a close eye in case it goes past 38, which is the 'warning' level for cancer patients and it means that we need to contact hospital.  If her counts were low too, it would automatically mean hospital.


Son is still getting over the chicken pox: we've had some nasty ones that won't heal.


Husband now seems to have crappy virus too, so I can't leave him to look after them in case there is a problem with daughter and she needs to be taken in.


Sigh.


I must have some bad juju in my house.  I'm wondering about getting a priest in to exorcise it.  Or about waffing some sage about for a good cleanse.


I have no idea how we manage to continually attract such crappy health.  I could understand it if we ate piles of rubbish (ignores two pizzas from last week... bad example) and were really unhealthy.  We aren't.  We eat lots of the 'right' food (plenty fruit, veg, OJ, wholewheat, largely vegetarian with some fish) and get out and about when we can.  


Perhaps if I was mainlining vodka, smoking and eating Chinese all week, things would be better?  :-D