UnlikelyAmazonian's DS is gravely ill

[PiranhaMorgana]

Please pray for UA's son,4yo ,who has just been diagnosed with Leukaemia and is on his way to Bristol Children's Hospital this evening.
UA is currently banned from MN after an altercation on Relationships,but she has continued lurking and really misses the support which helped keep her strong for her DS since her very abusive xh disappeared 4 years ago.
She is a very dear friend of mine and her DS is her entire life.She is absolutely devastated and has no family.

do they have visiting times?

are you all on one big ward? thought that would be nightmare for infection with immunocompromised patients from chemo?

Thanks. yes exactly giraffes? anyway, we are in oncology ward for under 10's and yes we have play specialist who helped ds with shit we went through last week. but she doesnt work weekends.

and there is a Wii machine that ds has found and loves
but it is locked away at weekends because of thefts. what aq crapulous wo we live in eh?

Yes went to see Friends lady but just not suitable for ds 4.

We are ok though I am feeling quite desperate actually. What would happen to ds if I had to go home for three dayds or I got worse?

Oh yes silly me ds would be a TV chdf.

Hello lovey, sorry to hear things are so extra uncomfortable for you and DS. :(

Must be awful being in so hot a room - I know they can't risk anyone getting a cold while under treatment but still. When I had DS in hospital, it was December and it was stiflingly hot on the ward. Thank god I got a private room (because I was threatening to leave) where I could open the window and get some fresh air!

The nurse with the meds - there HAS to be something written down somewhere re. your DS's schedule - can you speak to the oncologist about it? Especially if she made it up wrong, FGS! Don't they have special nurses who are trained in this stuff doing it?

Oh what a nightmare for you both.

Could you ask to speak to the ward manager and explain that you are finding it difficult to cope with the noise levels and the heat. The staff will be used to both and maybe they assume that you are ok.

The NHS that everyone raves on about does have gaping holes in it sometimes doesnt it? Crap food is really just not on.

You are in my thoughts.

You'd probably rave on about it as well if you didn't have it any more, Serin. It's not perfect by a long way - but compared to having to pay for my clexane, scans and other medications throughout my current pg (all free under the NHS), it's still something worth hanging on to, although it needs improvement (and NOT by bringing in more fecking managers - by improving working conditions at ground level!)
Anyway. Not the place, apologies UA.

And the food in the NHS is utterly dire, I completely agree - can a friend or someone bring in food for you so that you don't have to do it every day? Please do take up the offers of help on here - I know you're a fiercely independent woman but the strain of managing mostly on your own is going to take a toll - do let those who can help you before you collapse.

Hi, I am coming to out patients for a check up for DD3 on Thursday morning so if I can bring anything/do anything please please say.

It's shit though, I hate having to ask for help when DD3 is in hospital, even if its just for something like a friend taking DD2 to school when they walk past my house to get there anyway. I struggle to do things and get upset when I really don't have too.

Just read my last post and it sounds really patronising. Worded it badly, I meant I am just my own worst enemy, wasn't accusing you!

Sending you healing angels, UA xx

Hope things improve soon, UA! Sorry to read this.

Just dipping in and out.

I had a friend in our youth - many moons ago - who had this as a child. Treatment wasn't so good in those days, but she survived and by the time I met her when we both about 20 she was 100% fine. I'd never have thought she had ever been ill, let alone so seriously. In those days, when she was 5ish, she was almost a guinea-pig for treatment! We've lost touch now, but she's a musician and travels the world playing, so I catch the odd glimpse of her on telly from time to time.

Anything at all UA, toys, colouring, an iPod for some music or stories, snacks, clothes.

I feel helpless and can't even to imagine how tough this is for you and you ds right now, so if I could do just a little package to bring a smile fleetingly to your faces then I'd do it in a shot.

Please do ask your ds's oncologist about the mistakes with the medication - that's just not on.

Hoping that hings become more bearable very soon

Xxx

Oh, yes, don't put up with crap! Go to the ward sister first, use PALS to make formal complaints and use the registrars to get the consultant. We've been here so long, and Aillidh's leukaemia (AML) is so rare and required so much treatment + stem cell transplant that I just go to her cons or the transplant doc with everything.

Oh UA, so sorry to hear the ward has been so hellish. I hope you get some help soon. I'm so so so glad I'm a regular blood donor, don't mean to sound like some kind of super hero because I'm not, and I know many can't give blood. But I think if you are medically able to, everyone should try just once. Knowing it could be a lifesaver for someone like your ds makes it even more important. I'm also on the bone marrow list and would leap at the chance if I was a match. Hugs to the boy and you xxxx

The machine noises you will get used to. Right now, she's on 3 IVACs, a syringe driver, a ketamine pump and a morphine pump. The only ones that now wake us are the ketamine and morphine pumps, so I make sure anaesthesia tops them up by 11PM because they are super loud. The feed machine is loud, too, but she's on TPN now so we don't have that. Get them to show you how to use it and top up the feeds at night so it doesn't go off. It'll only go off if the line is occluded then.

Many low-risk ALL's wind up not needing an NG tube so that's good! DD has a Hickman line in. Again, low-risk ALL's usually only have it in for 8 weeks but it's a godsend, IMO! Saves trashing out the veins with canulas. She has one in now because she needed more access for drugs and she hates it. Even on her, with good veins, she's got through 3 of them in less than a week.

Some staff are louder than others. But things like talking loudly with other staff in the room or switching on overhead lights during the night isn't on unless there's a somewhat emergency. Talk to teh ward sister about this.

Get you some silicon earplugs!

You will learn you need a stiff set of balls or lazy people will walk all over you.

FWIW, you cannot open the windows in many paed onc wards due to infection control.

It's like any other place: you get good ones and bad ones, trouble is, you're stuck living with it.

In DD's case, she won't be out until at least July.

Sometimes they borrow nurses from other units and they are shitheads. I had one this morning. So DD's consultant was in, I've had the misfortune of having lots of close contact with her, so I told her, 'Well, we have permission to use Skype and the net from Dr. X, too, let's go bother her with this trivial matter, too, just to clear silly non-issues up, she loves being interrupted for superfluous reasons. It puts her in such a good mood. Ever seen her in action? Nearly all of us have. It's why most people stay out of her way. But c'mon, I'll go first.'

She left.

How are things today UA? Thinking of you x

We are hopefully going to be allowed some overnights at the Clic Sargent House from today which will be great as it's so peaceful there. Waiting for blood results before we can leave though as he's a bit dehydrated and may need to stay in on drip.

There is No laptop or PC at Clic so I won't update much. But he is doing well: plumping up, grumpy, quiet, etc. I have cut his hair short in advance of it falling out as it was quite surf-dude-long.

He is coping amazingly well, though is desperate to get off the ward.

He still has to be pinned down to be given the meds which is crap for us both.

He has a lumbar puncture and bone marrow aspirate tomorrow.

He is on course so far with the treatment.
Not looking forward to going home actually as it's going to be a hell of a lot of up and down and up and down to hospital 2 hours away, three or four days a week for chemo.

Expat, so sorry your daughter is going through similar but i know you are a strong woman. You will get through it.

Thanks so much to headfairy. You are a star. What lovely gifts! H was very excited. x

Glad he is getting out! They're going to throw away the key on us . We are also 2 hours away from hospital, it sucks.

I remember DH and me having to get DD (then 2.5) in a headlock trying to syringe her chemo (about 2ml of it) into her mouth. She got used to it eventually and even started to take it herself.

Keep strong. xx

Can he not get it through an NG tube? A's chemo has all been inpatient, through her Hickman line, but she flat out refuses to take meds orally and always has, and she does need quite a few of them, so she has an NG tube in for them.

The drawback is that they were out about once a month and have to be passed again.

Thinking of you both and sending all my love xxxx

Just want to add thoughts and prayers to the rest. You and your DS sound like such a brave strong pair. I wish you all the luck in the world.
I am so glad that mnhq lifted the ban.

UA - it is good to see you back but such a shame it is in these circumstances. My thoughts and prayers are with you and DS.

There is lots of wonderful support here still, I hope you can find strength in it.

Oh I'm so glad you got the package. I was worried it wouldn't get to you! I hope you both manage to get some rest at the Clic Sargeant house xxx