Transplant day.

Today at 12:30 Brett's new cells were put into his body.
The whole transplant took 50 minutes.
Our lovely German donor angel had had 1600 ml (1.6 litres) of bone marrow taken.
Ouch!!! Bless her heart.

By the time the hospital had taken out the bits they didn't want Brett had a total of 100ml put into him.

100ml is enough to give him a new lease of life. Mind blowing really.

The specialist nurses stayed with us the whole time he was having the transplant.
We chatted and found out some
Interesting facts such as the first transplant was conducted by the patient having to drink the bone marrow. It didn't work and yuk!!

This is what bone marrow with a few red cells looks like.
This is what a chance of a cancer free life looks like.

This is the time of my discontent

As Brett's room has to be kept sterile a lot of great things have been out in place.
One of which is the clock. We all need a clock right ?
Especially important when he has one hour to eat or drink anything prepared and things kept in the fridge must be strictly discarded within 24 hours.

So our clock is vital.
Just our bloody luck then that the clock in our room is wrong.
It's out by an hour and five minutes.
Not a problem I thought, I'll change it.
I got on a chair to get it off the wall and found that some bright spark had cemented to the wall !!!!

So Lovely clock sits ticking and mocking me.
I must remember to bring a hammer in with me tomorrow.
X

German Angel

Today, an extremely brave German woman went through an operation to have her bone marrow harvested.
She had already endured weeks of testing to ensure she was physically fit.
She had a general anaesthetic whilst the doctors removed her bone marrow by inserting needles into her hip bones at least 6 times to be able to collect enough marrow.

She was no doubt scared and worried about the procedure and will feel poorly and very sore for the next week.

And this amazing woman went through this for a person she doesn't even know or has ever met - 
FOR MY SON.

Words cannot describe how amazing I think this lady is.
All she knew was her bone marrow was needed for an English Boy. 
All we know is a German lady was a match.

A match !! - No, she is nothing short of an angel on Earth.

After discovering myself, my husband and our daughter wasn't a match the bone marrow team first searched the UK, then Europe and finally the rest of the world for a suitable match. But there wasn't any.

Brett has a rare element to his tissue type and at one point the only option open to us was a partial match from a person in America.

Then suddenly a miracle happened, this German lady just popped up on the system and she had the rare element Brett so desperately needed.

I still get goose bumps when I think about it.

To go through so much for a stranger is an amazingly selfless act and I really cannot thank her enough.

As I type this. her life saving cells will be landing in the UK after being quickly transported to the German airport.

Transplant happens Thursday.

A stranger has given my son the chance of life, and I feel so humbled by the greatest of all gestures.

I have a thank you card which I am writing in English and German and a small token of my thanks. The letter gets sent via our bone marrow team, as all details have to remain anonymous, which is the biggest shame.

If ever there's a person I would like to meet, its this extraordinary lady.

If ever there's a time when thank you isn't enough, it's now.I would love be able to look her in the eye and tell her what she means to me and my family.

danke du bist ein Held
Apparently it's this in German:

Thank you your a hero. xxxxx

In The Bubble

We moved into the High Dependency Unit yesterday.
To say it was stressful was an understatement.

The room is about 10ft wide narrowing to 5ft and about 18ft long.
It has a small TV, a tiny fridge and a tiny bathroom.
Its clean and very basic bar the medical equipment lurking in the corner which  looks state of the art.

We named the unit 'the bubble' because that what's it reminds us of. A place designed to keep Brett safe whilst his body goes through the very dangerous Transplant process.

Brett already hates the room which is pretty unfortunate as its his home for the next 4-6 weeks, all being well.

Kev was the first to stay with Brett last night, in the Bubble and he really enjoyed it.
He learnt how to do the washing and drying, he learnt the ins and outs of entering the room.
Wash hands
Alcohol wipe anything that needs taking into the room
Place items into a polythene bag and seal
Alcohol wipe the bag 
Open the door with elbow and drop the bag on the floor
Close door
Wash hands again
Enter the room opening the door with the elbow.

We must not open the door if not totally necessary as its a pressurised room pushing the air out of the room to stop germs coming in.

I walked into hospital this morning full of foreboding.
Its not that I can't learn a new routine, of course I can, its what the routine represents.
My son is dangerously vulnerable to germs that you and I don't even register.

Oh Crumbs.

Moving the goal post again

I don't know what planet hospitals are on sometimes.
They never seem to realise you could possibly want to go home at a reasonable time. Excuse me, I have another child at home. Oh of course you know that.

They go crazy on the odd occasion your accidental late for an appointment yet have no problem keeping you one or two hours past your appointment time. Most cancer patients here know if you have a half hour appointment be prepared for at least half a day waiting.

But its the constant moving of goal posts that I am sick of at the minute.

Brett's transplant was put back two weeks - not their fault. I totally get that so not a problem.

We moved onto the ward last Monday and was due to go into HDU isolation today. It has now been out back until tomorrow.

For gods sake people!!!!!

This is not like moving normal hospital beds. We have a huge list of things that need to be done correctly.
They clean all the equipment and the room
Brett has to be showered and changed just prior to moving in.
Everything that enters the room has to be either washed on the unit and placed in sealed polythene bags or carefully wiped with alcohol wipes and sealed in a polythene bag.
The bags then get wiped over and placed in his new room.

For protection purposes it's best not to take too much stuff into the unit.
Everything including ME is an infection risk.

I have blown my brain planning what can go in the unit, what can't, what needs washing, what needs wiping, what needs buying (new toothbrush paste soap shampoo etc )

I already have three bags ready to go in and the final things were gonna get done today.
But I can't now as I may still need to charge my phone or refer to his transplant information.

What a royal pain in the ass.
Stop moving the goal posts.
I was all prepared, now I'm not.

Could you imagine the chaos if Brett or I announced that, no actually we don't want to follow your plan today, come back tomorrow.

What a week

I can't believe radiotherapy is finished already.
The week was a blur. Brett struggled with the twice daily visits.
Whenever a nurse or myself would attempt to wake him up we got grunts and groans. But that is mild by teenage standards.
He only got very mild side effects to the TBI. He had jaw ache, was ridiculously sleepy and strangely was unable to produce saliva.
Apparently this is due to the glands drying out. He was given an aerosol spray containing artificial saliva to help him eat.
But other than that nothing too bad. Which is a HUGE relief.
He has also had three days of a chemo called Campath. That effected his lungs and he spent Thursday night on oxygen.
But again, that's all cleared up now. He's eating and very ... Well ..... Good.

The doctors are extremely pleased with his progress so far. Pleased and a bit mystified. Brett has been known to have side effects to drugs that don't have side effects!!!

Total body irradiation and strong chemo and he's sitting in bed eating a macdonalds (whilst he's still allowed)
I'm sure I'm dreaming.

Day 2 radiotherapy

Brett's a legend.
Yesterday radiotherapy was vile. No other words. Without going into too much detail it was seriously degrading (though handled well by the staff) and frightening.
I compare my son to normal 17 year olds very rarely but when I was shuffled out of the room to watch my son receive intensive doses of radiotherapy on his delicate body parts I felt awful, shamefully sorry for him.
Normal 17 means girls, drinking (uk terms) having nothing but fun.

Bad days are termed only by girls, pocket money and unruly hair.

I am so proud of my son. He is brave and strong. Funny and compassionate. Caring and kind.

Oh god he doesn't deserve his path.
He is amazing.
How many parents can feel and say that?

Its the Beginning

Finally the day has arrived that has been talked and thought about for the last 6 months.
Today Brett gets admitted to hospital to start the transplant process.

I thought I would feel worse than this, bit I just feel a relief sense of 'Bring it on'

The last two weeks have been hell. 
The transplant being put back destroyed what little nerves I had left. I was left in no mans lands - can't organise, can't sort anything out.....just wait.

Brett started the conditioning chemotherapy last Thursday and has been able to have it every day as an outpatient, but today is the admitting day.
He starts Radiotherapy today and has it twice daily until Friday.

I shall continue this blog as a daily diary. 
Wish us luck x

What Now?

This was supposed to be the last night at home before we moved into hospital for the radiotherapy and transplant.
That's been put back two weeks and I'll be damned if I know what to do with myself !!

I have played the tidy up game to the extent that when my lovely sister (in law) came round on Friday she announced "wow you look like you've been burgled" ha ha

What she meant was the house was finally tidy with everything put back to where is should live, happily residing in cupboards.

I have even cleaned behind the computer table ...yeah I know.. I'm desperate or what, right?

The point is when you build yourself to the massive extent (of watching someone go through a transplant) the brain is very reluctant to change its thinking.
transplant, transplant, transplant - it screams
No dear another few weeks - you tell it.

Its not having it, my brain is too old and too frazzled to let go of transplant focus.

My brother has offered to have the children next week so Kev and I can get away for one night... my brain won't even focus on THAT!

Freedom, peace and quiet 
ahh come on Mr Brain, try at least?

A night off, in a nice hotel, away from "Mummmm !!!"

Mr Brain firmly says 'lets see what happens first'

I know what he means, it would just be our luck to book a swanky hotel and the bloody transplant to be bought forward.

X

Transplant Hold Up

Yesterday at 4:30pm, I took a call from Brett's transplant consultant.

My heart sank as I heard that his transplant has been put back two weeks.
Apparently there has been a problem with our lovely German donor.
She has been unable to give stem cell (cells are taken from the blood)
and has bravely opted for bone marrow harvest.
(So love this woman I will never meet.)
This means the procedure needs to be performed in a hospital rather than a donor centre.

Basically, the logistics, organisation and timing of that, means Brett cant start conditioning today as planned.

Disappointed is an understatement.

As much as Brett doesn't want the transplant at all (who would go into chemotherapy and total body irradiation singing whoopee) he knows its his only chance.

So today I am totally at a loss with what to do with myself or help the members of my family. All the adrenalin and nerves that had been building up for today, now have no place to go.
I feel jittery, depressed and just weird.

I was so looking forward to getting this transplant started. You cant finish something until you've started it.
I am dreading the transplant and what it could do to my darling son, and I am also dreading trying to function and cope as 'normally' as possible for our daughter.

The has been fighting and tears in the house today, I have tried to point out that the kids are just expressing how bad they both feel in the only way they know how, acting out.

I just wish I could join them. I want to throw myself on the floor and kick and scream 'it's not fair'. 
But I cant so I had better go clean something.