In the children's ward

Oh how we've been spoilt by the teenage cancer unit.
Brett has had to be admitted to hospital as an emergency, as he has high temperatures.
Which means he has an infection somewhere.

Anyway the Teenage cancer unit has been closed due to staff shortages so we are on the normal children's cancer ward.
Screaming toddlers, whining babies and the dulcet tones of peppa pig in the background.
We are so sick of bloody peppa pig, Bacon sandwich anyone?

Check out our new pad.

The last few weeks

It's all been a bit of a shitty whirlwind.
Brett has been in hospital and out of hospital. Lots of chemo and mountains of painful side effects.
We've had a partial tissue match in USA which was not great.

I don't mean because the match was American I meant because it was only a partial match.
I don't care which country the donor comes from or which planet for that matter.
Martian bone marrow - yes please anything for a chance of life for my son.

We've had depressing talks about what hurdles Brett has to jump over before they'll even go to transplant.
We've had equally depressing talks about having only a partial match and what that means.

And then it all changed
We have a new match found in Germany. This donors tissue type is only a 'minor mismatch' and suddenly it's smiles all round.
And the husband and I wonder why were feeling exhausted.

In and out?

Brett was admitted Tuesday after a bed became available.
'Hurray' he shouted..... Emm thats not a direct quote.

He started chemo and is having 6600ml of the 'poison' every 12 hours.
We should be going home thursday to return next week and do it all again.
Oh the joys.
Plus we have the added bonus of administering two hourly eye drops (day and night) as this chemo has a plethora of hideous side effects, as usual.
It is what it is, I suppose.

I need soothing

Tomorrow we are back at BCH to have a bone marrow and lumbar puncture and to find out if there is a bed for Brett to be admitted to start more chemo.
We were phoned today to tell us there is no bed today and to pack for hospital tomorrow but there are no guarantees of a bed.

Brett is in a complete grump about it. 
Well bloody Norna,  who could blame him?
4 years of chemo, meds, surgical procedures which all basically incorporate  just pain.
I try and be positive, upbeat and perky but mostly he looks at me with murder in his eyes and the statement I am starting to despise 
'that's all easy for you to say, you only get to watch'

I try the comedic approach
"Come on Brett perk up - come and get some more lovely poison, tally ho old bean, chops away." 
I cannot print his response...

I am feeling uck, he is going to get three more weeks of torture before the whole bone marrow transplant torture begins.(hopefully)
I may only watch but I hurt too.

I would rather be having the treatment, 'Let it be me not him!!!'
I tried appealing to the Gods 4 years ago but they didn't listen though.
I would rather have my toe and finger nails pulled out than to sit and watch helplessly as my child suffers, again.

Words cant describe just how bad I am feeling, although other cancer mums get it, they know.

I am leaving now to drink wine, lots if it, whilst I pack for the faint chance of going into hospital tomorrow.

I need a hug.x

So excited !!!

I woke up at 5:45 with an excited buzz in my tummy.
Today is my birthday.
41 years on earth.
I could give a flying faluga about my age unlike most women.
Age is a gift. - hang around child cancer wards and I guarantee all problems with ageing disappear very quickly.

Anyhoo, Today is my birthday and it's the first time in 4 years that we are not in hospital as inpatients or visiting outpatients for chemo/blood or platelets transfusions.

Hence the excitement. Which has brought an added bonus, I actually thought I had lost my capacity to feel giddy or happy about anything (other than my kids lives )

So Tonight I will have round the few true friends and family I have left and I shall party.

Just because for one night only - I can.

Here's the cake my friend made for me.

Eeeeepppppppppp
Happy birthday to me
Happy birthday to me

Don't play with your food

No one listens......
Especially Poppy
Very good though, artistic haha..

For the love of Morphine

We are on home leave for a while.
Just how long for, we don't know.
Brett came out of hospital Friday for a night release and was properly discharged on Saturday.

He is out tonight with friends. 
He is weak, bald and probably still neutropenic but who can say no?
I mean, what is in this teenagers life?
The risk of death, well yeah, dur

The risk of pain - permanent, 
Loving the Morphine xx
The risk of embarrassment - constantly.
How many teenagers do you know that have had to show their bums to doctors?

Most teenagers wont even leave the house on a bad hair day. 
My son has been through so much, he feels he has lost all dignity.
Just last week his mucositis had travelled from his mouth all the way through his body - and I mean all the way through!!!
Doctors came from far and wide to have a look at his regions - oh the shame he went through, but if they can stop the bleeding, then good for them.

(Mucositis is the painful inflammation and ulceration of the mucous membranes lining the mouth to the digestive tract)

Ouch - I whinge when I have one mouth ulcer - at least I still have a mouth, unlike him, his whole mouth is one big ulcer.

So, as the bad cancer mum I am, I have let him go out for dinner with friends.

Oh the shame!....Actually I really couldn't give a ...

You live it, then you can comment on it, 
until then...just keep taking the morphine.xx