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Original poster

UnlikelyAmazonian's DS is gravely ill

507 replies

PiranhaMorgana · 17/05/2012 20:40

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.

OP posts:
Solo · 25/05/2012 00:18

Lots of love and prayers from me too.x

seaofyou · 25/05/2012 01:10

UA don't think about having to force the meds as bad....your ds only 4yrs old and he will thank you when older when understands...he is such a brave soildier having lumbar puncture etc...going through more than most adults do in 4 small years...you must be so proud of ds and you are amazing Unlikely.

Are you allowed a fan at the bed? Ask for one.

They were very fast in getting ds treated and fab they have started chemo...how long is it for the chemo? When will you both be able to return home for a break?

I know you dont even want to think of this but the costs of staying in hospital is expensive has anyone mentioned DLA...I think it is immediate and help with costs of daily visits to hospital shop to buy ds books/magazines/toys/nightwear etc but stops after 12 weeks in hospital, so not sure if they start it whilst in hospital?

Does anyone know any charities that can help UA with anything to make life easier ie Respite so UA can get home to have shower etc...do you stay their at night UA? Do you have a bed too to sleep in? I can't imagine how exhausted you must be and when your friend is their do not feel guilty about going home for a sleep....as you need to look after yourself too so you can look after ds.

Keep us all posted when you can x

Thumbwitch · 25/05/2012 02:07

There may be a MacDonalds House there, I don't know - but it might not be necessary for UA if she has a bed on the ward. When my niece was in KCH having her brain tumour dealt with, my sis and the whole family stayed in the local MacDonalds house (niece was 21mo)

lisad123 · 25/05/2012 09:28

Macmillan also do grants to help with the extra cost of a person with cancer.
DLA Is possible but is a huge form so get someone to help you.

MadameOvary · 25/05/2012 10:11

The heat doesnt help. Could you have a fan, as suggested upthread? i'd happily have one delivered for you.

OhDoAdmitMrsDeVere · 25/05/2012 11:20

ClicSargent social workers can help you with the DLA form and they should also give you some cash to help tide you over.

headfairy · 25/05/2012 12:40

I'm miles away I'm afraid, but UA, you know me, if there's anything I can do/send/organise don't hesitate to ask. I hope your ds is a bit more comfortable today. It's marginally cooler here, not much respite though. It's only a degree or two down.

Lilymaid · 25/05/2012 12:48

ClicSargent pay out a grant of £170 pretty well automatically when a child/young person is diagnosed/admitted to hospital. DS received one within days when he was diagnosed with leukaemia last year

Vev · 25/05/2012 13:28

Luekaemia is evil and it's a gruelling journey. Hope he's feeling well soon. Look after yourself amazon and keep strong.

ZuzuBailey · 25/05/2012 20:08

I got a grant from ClicSargent (when it was the Malcolm Sargent fund) for driving lessons so DD wouldn't have to travel to hospital every week on the bus. I was also helped with a hefty heating bill.

We had a holiday in a lovely caravan courtesy of the Leukaemia Care Society

UA and her DS should be assigned a social worker by the hospital who can liaise with these charities on their behalf. They deserve all the help they can get and are in my thoughts.

seaofyou · 26/05/2012 22:05

Yes UA please get a SW to help you fill out the forms. Also Family Fund help children who are sick under 16 I think they might give driving lessons. They do washing machines, dryers, holidays etc.
Caldwell Children Charity may be able to help you?
Make a Wish Foundation do holidays I think?
Also when DLA is awarded you apply for carers allowance and phone tax credits to get extra premium. This will all help cover costs as it so expensive buying anything at hospitals. If you can drive and have not got a car the mobility element you can get a car for 3 yrs to help with ds outpatient appointments.

How is your lovely boy this weekend UA? I hope you got a fan? I hope you have got some rest/sleep too.

I am so pleased there are other MNs here who know where you can get some help.

pageturner · 26/05/2012 22:12

Hi UA. I don't really come on MN any more but a friend let me know about this. I am so, so sorry to hear what you and your beautiful boy are going through. I won't post much, but you can be sure that I'll be following the thread and thinking of you both. Sending all positive thoughts. x

mumofjust1 · 26/05/2012 23:36

Still thinking of you both UA x

As someone else mentioned, Leukaemia Care are fantastic - they helped us hugely when my dad had acute myeloid leukaemia, give them a try if you can

Praying for your brave ds, and wishing you strength

X

Thumbwitch · 27/05/2012 00:01

Hope you're still getting support from outside, UA - and lots of useful ideas here for more support to help you through practically. I hope that you take them all up - it's hard enough dealing with this emotionally, it would be lovely to have some of the practical difficulties dealt with by others.

(((hugs))) as always for you and your lovely boy xx

UnlikelyAmazonian · 27/05/2012 20:25

Its crap and hideous. I could write so much more but I am so so tired. I have to force his meds down still and he wails and his face is red and streaming. He looks and feels humiliated as he is always such a brave canny boy outside of all this.

He's having a three hour blood transfusion tonight as he's been so low and quiet, angry, miserable. Its unbearably hot on ward but I have been bought a fan now which helps. The ward is so noisy it's hellish. The children have packs of marauding families in all the time, bellowing and giggling and rolling in a bit pissed sometimes. Ds puts his hands over his ears. Ive got him some ear plugs. we just arent used to this level of noise and confusion - our house is just he and I, our doggies. No catastrophising fucking parents/grannies/grandads/uncles aunties and 42 cousins. Horrible.

How can they all be so bloody jolly?

Ds is doing very well and we went out for a stroll in buggy today but he didnt say a word and wanted to come back to the ward.

We might be allowed out midweek to stay in Clic house nearby but i dont know. I havent had a shower for two days and really truly?? well the nurses just leave you to get on with it. It must be very normal for them - screaming cancerous kids and upset parents.

There really should be more help for lone parents like me doing this on our own th ough.

They homnestly havent got time to give much of a shit or any one on one care as they constantly hjave to dish out drugs.

I have to change ds and my sheets, make our tea (both of us as the food is so hideous he wont touch it).

Shocking really.

Havent previewed this so sorry for typos

oshuk · 27/05/2012 20:28

This puts all our problems into perspective. Keep your chin up UA.

UnlikelyAmazonian · 27/05/2012 20:28

oh, and this morning, the nurse asked me how i would like ds's drugs made up ffs. I said surely it must be all in handover notes as we have been in here 10 days now. she said there's nothing written down at all.

so i had to tell her how to mix dexamethasone for ds and how to crush the septarin and rinitidin and bring it with a yoghurt.

she still got the dexamethasone mix wrong..ie too much of it. how can that happen ffs???

IwishIwasmoreorganised · 27/05/2012 20:41

I'm so sorry to hear that you're going through this UA.

I'm not able to get to Bristol I'm afraid, but will happily post anything that will make life easier or more comfortable to you - just pm me you name and where to send it.

Wish I could help more, but you're both in my thoughts

Xxxx

UnlikelyAmazonian · 27/05/2012 22:28

Thsnkyou organised. x nothing really to send us except platelets and a lot of good luck. lololol but actually not funny. [shit silly mum]

out2lunch · 27/05/2012 22:33

yy to posting anything anything at all that could help x your last post so sad - hang on in there.hoping for the best for you both x

SerialKipper · 27/05/2012 22:36

Sending bucketfuls of good luck.

tudorrose · 27/05/2012 22:46

Hello, just found your thread and haven't managed to read it all yet.
Am so sorry you are going through this.

I spend a lot of time in Bristol Hospital on Ward 38, my daughter spends at least two weeks in hospital every three months and if I rememeber rightly that is the ward next door to you. My daughter has CF.

I don't know much about cancer but I know lots about staying in Bristol Childrens Hospital unfortunately, so if I can help in any way please say.

MadameOvary · 27/05/2012 22:55

Oh UA - that sounds fucking awful. I have a severe intolerance to noise and that would drive me batshit without all the stresses you are under. I regularly use earplugs- would you like me to send you a load via eBay? they are the 3M ones and a fresh pair makes all the difference. Also would your DS listen to music? An MP3 player or ipod?
Please have a think about anything that could help you and your lovely boy carve out a wee space for yourselves and I'll happily send it, be it earplugs or an essential oil vapouriser (if such a thing is allowed), toys etc.

Really want to go to Build a Bear and get one with a voice that says "Shut the Fuck Up, you're doing my head in"
(Not really appropriate but hopes it might make UA laugh)

lisad123 · 27/05/2012 22:56

Oh UA sorry to read your last few posts Sad horrible to be in hospital ward and you think the nurses would be better. Which hospital are you at again? If your nearby I'm happy to come and sit and come play puzzles and bring DDs ear defenders. I'm crb checked Grin
Hope he gets moved soon so at least he can get a peaceful time. I have to say I would be tempted to go tell them to shut up, it's a hospital and yes always nice to have visitors but some kids need more rest than others Sad

giraffesCantFitInThePalace · 27/05/2012 23:05

can you talk to them about ng tube for meds? He may well end up with one anyway soon. Can you see a play specialist to talk about taking meds.