Day +32 New Years Eve

Today was the third consecutive day Brett's been allowed home for a few hours.
It's had it's highs and lows.
Mostly to do with hospital staff not being on the same page.
It's all very well one doctor saying you'll be home by next week but not if the next doctor says you should be home in the next 2/3 weeks.
Communication is my biggest gripe within the NHS.

I am not moaning about our amazing FREE world leading health service. Not one bit. The cost of Brett's fantastic innovative treatment is probably in the millions in all honesty.
He's had new chemotherapies worth thousands each. Then you add up the nursing, hospital stays, medication, chemotherapy, radiotherapy, home nurses, phlebotomy cost, micro biologists and many more aspects that I'm not even aware of.

I do know that a straight forward transplant alone costs the NHS £250,000.
So, no I am not moaning.

Ok, but I will suggest that the biggest bug bear that exists, is the lack of communication/ different opinions.
If every health care professional was on the same page it would make the patients and families experience much better.
Simple things such as: Brett's being fed by an artificial nutritional agent called TPN. Which goes straight into his major artery via his central line and takes 24 hours to complete the daily infusion.
Apparently it can't just be stopped it has to be weaned down.
Although another teenager with cancer whose a friend was visiting Brett today said she had hers stopped immediately one day!!
Anyway -
consultant said - I'll reduce it by 4 hours
Next day another doctor said I can't reduce it yet as your body is relying on it.
Same day a nurse says we can only reduce it by 2 hours a day.
What are you supposed to think?
I listen to the highest paid member of staff.
Consultant wins.
Would the rest of you please keep your nose out of it.
And it's the same for everything. Everyone has an opinion or experience and it all goes into the pot to make a very confusing soup which there is no need for.

Tonight is News Years Eve.
Kev and Poppy are round my brothers for a few hours but are going home before midnight.
Brett's asleep (and grumpy- he wants to be out of hospital for good)
and I am blogging drinking coffee and eating chocolate.
It feels like the world is partying and I'm missing out ....again.

But who cares ?
It so could be much worse
I am a very lucky and grateful mum.

Happy New Year to all my readers across the world.

Day +30 First Visit Home

I drove to the hospital today excited to collect Brett for his first few hours at home since transplant.

It had been a tense morning as we didn't know if he would actually be released.
Bloods checked, doctor nagged and Brett was ready for home by 1:30pm with the instructions to be back for 6pm.

We got home and Brett immediately busied himself sorting out his Christmas presents,
what he wanted (a small pile )
what he didn't want (the larger pile) and what needed returning to the shops for a refund.

I was ordered to make his favourite meal of sweet and sour chicken and rice which he only managed 5/6 mouthfuls of, but that was good enough.
His stomach has shrank due to him not eating anything for over 5 weeks.

Poppy had been out with my brother and his wife, spending her Christmas and birthday money and was back by 4pm

We all sat in the living room together, the boys watched the football and Poppy and I played with her new furby.
I decided to take a picture of furby in Brett's empty hospital sick bowl - much to Poppy's disgust.
I thought it encompassed my Christmas this year, totally.

All too soon it's was time to leave.

As we drove back towards Birmingham I noticed how pretty it looked in the distance.
It was 5:30 by this time, it was dark and the rain had stopped for a short while.
The thousands of little lights twinkled welcomely as we moved closer toward the city.
I thought I would feel sadder than I did. Maybe it was because I knew the phased release process or maybe it was because I feel overwhelmed with happiness that it's all working out so well and he's not only lived but is slowly getting better.

We arrived back in the isolation bubble and Brett said he felt very sad that he wasn't at home tonight.
I told him not to worry and he'll soon be home for good.

Tonight I cant help but sit here thinking - bloody hell he's done it!

Against the odds AGAIN,
Brett fights and wins.

We may be home for good next week ?!?!?!?!

Day + 29

Day 28
Brett continued to feel yuk.
He was still spiking temperatures and vomiting.
I had a big discussion with one of the doctors when Brett was asleep (though he was rarely awake).
The doctor thought maybe Brett had internal Graft verses Host disease, possibly in his gut.
I said I wouldn't be surprised as his gut has been a major problem throughout his 4 years treatment.
The doctor had started Brett on a course of steroids with the understanding of, if it worked it was Gvhd and if it didn't work they would have to think again.

But the truth was the doctors were a little baffled. Brett's bloods and stats were great, they could find no reason for him being so ill.

That was at 2pm, steroids given Brett back to sleep.
At 6pm Brett woke up and said he was hungry !!!!

The only thing I could find that worked with his clean diet rules was coco pops and milk.
He ate half a bowl and promptly put a food order in for today!
I was thrilled.
Amazing what little things please you.

Today Brett woke up feeling relatively good (which is still really ill to us)
I swapped with my husband at lunchtime, as we do everyday, and reported Brett felt good, he was watching TV and had chatted a bit. Then I drove home looking forward to a nice sit down.
Its been nearly 6 weeks and I'm getting really tired.

My husband phoned when I got home to tell me the excellent news that Brett may be allowed home for 3 hours tomorrow.
The hospital do a phased home release to see how your body copes with the environment.
It starts with a few hours, then one night, then a weekend, then discharge home to attend the weekly clinic appointments.

I was absolutely euphoric.
We know this isn't the end of Brett's struggle back to health, far from it. The road to full health is a long one but who cares - here we go!!

Then the horror hit me
Brett in THIS house
It's not ready, it's not clean and it looks like a bomb has gone off.

Well a bomb has - the Christmas / hospital bomb.

Crap !
So out went the nice sit down and in has come the manic cleaning.
I'm writing this whilst waiting for the tumble dryer to finish.

At this rate I should be ready just before he's released tomorrow lunchtime.

Christmas Night - Oh Bless Them

After a grinch worthy day on the ward I was very pleased to see the night staff come on shift.
I was pleased because I like this particular crew of nurses.
After so long you get to know the nurses, who you can trust, who's efficient, who you like etc.

Kev and I have nick named a few.
I know it's mean but some really do warrant their dum & dumber, tweedle dum and tweedle dee titles!

I'm not saying they're not caring just not as .... Maybe .....How shall I say? ..... As quick as some of the others.

Anyhoo, lots of jovial banter was flowing, Brett even joined in teasing a few nurses and I thought this is going to be fun tonight.

Then the alarm that we all fear started screeching and all the nurses went running.
A child was crashing.

I went quickly back into Brett's room, I have no need to gorp at such a tragedy, unfortunately I've seen it too many times anyway.
Brett and I turned the TV volume up and tried to concentrate on some benign rubbish.

The alarm finally stopped and our nurses appeared back in the ward.
I went and made a coffee and threw the polite 'all ok?" to a nurse.
Yes,she said, all fine.

I was so pleased.
Little ones can crash so quickly but equally bounce up quickly. I made my coffee feeling all happy and relieved for the family.

A little time later I noticed a lot of adults mulling around the ward, it's way past visiting, I thought ......Oh no!!
I've seen this before.

I went and made another coffee and a nurse came and talked to me, though she needn't have said a word.
All the funny Christmas hats had been taken off and the corridor was chillingly somber.
Some of the visitors mulling around were crying.

I said to her, has the child gone to intensive care?
No, she replied sadly, there's nothing to be done. Should only be a few more hours now.

We both looked at each other. When you've been in this environment for so long death is nothing new but it never ceases to destroy me.
I filled up, she filled up.
I don't know this particular child well but I don't need to.

It's just a reminder of the evil we're fighting and how precarious our own journeys are.
That could be any of our children and there seems no rhyme or reason to which child dies.

I walked back past the assembled family.
I wanted to throw my arms round them and tell them I was so sorry, and it's not fair and no child should die like this.
But instead I gave no eye contact and quickly shuffled by.
Who am I to interrupt their grieving.

I know it's only a day but I sit here typing this in the dark thinking how it seems more poignant on Christmas Day.
A day of family togetherness, presents, singing, laughter and general merrymaking for millions of families and only a few yards away from me, a family are kissing their treasured child for the last time.

Goodnight little one.
I'm sure there's fun to be had in heaven for you.
God, please look after the family.

Day +26 Christmas Day in Hospital

Brett's been very poorly the past few days.
Constant temperatures and vomiting.
No antibiotics were working.
His temperature was still ridiculously high even whilst having IV paracetamols.

The night before Christmas eve was terrifying. Brett had a ridiculously high temperature that they couldn't get down then his blood pressure started falling and his heart rate went up.
That's what happened the last time he went to intensive care critically ill.
I didn't sleep all night. There was a constant stream of doctors and nurses checking him.
Obs were taken every 10-15 minutes and everyone looked worried.
By 5 am things had calmed down and Brett was steady again.

The doctors think it's either an infection (although none can be found that could make him this ill)
Or it's his cells engrafting. (that's the cellular punch up I talked about earlier)

With no real wellness on the horizon we prepared ourselves for the inevitable Christmas in hospital.

We knew he could theoretically have been home or had a few hours at home but we also knew he was way too ill.

Hey Ho, what's one Christmas when he has the chance of 70 more?

The real problem was keeping both kids happy.
Poppy has been struggling terribly with Brett's cancer this time.
When he was first diagnosed at 13 years old, she was only 9 and couldn't really grasp the concept.
Now she's 14 and understands fully and loves him and feels scared.
It's horrible watching her put on her grown up brave face for people.
She has developed great coping strategies but I still feel its unfair on her.

We had asked the consultant if Poppy was allowed to see him Christmas Day. They were unwavering.
Brett is in isolation for an important reason and they wouldn't allow anyone in unless he had achieved the milestone of three consecutive days with Neutrofils of 0.5 or above.
His counts had been 0.7 and Christmas Eve 1.3.

Kev and I decided early this morning to just go for it. I packed the presents and Poppy in the car and headed to the hospital. The important blood results had just come in as I parked.
Neutrofils today of 0.8

Phew!! Poppy was ecstatic to be able to spend an hour with her brother on this important family day.

We had imagined a beautiful family reunion full of joy, relief and laughter.
Life had other plans.

Poppy bounced into Brett's room and was shocked to see how he looked yet hid it well.
Brett greeted her by grabbing a sick bowl and vomiting.
Luckily this doesn't phase Poppy one bit as she's very used to it.
The present opening started and Brett descended further into a grump. It was as if it suddenly had dawned on him it was Christmas and he was staying in hospital.
When was time for Poppy and Kev to leave Brett was very surly.
He went straight back to sleep. No amount of cheering him up would make today acceptable in his eyes.

So I stopped trying and started talking about next year and what he would do if he won the lottery etc.

Sometimes you have to go "yep this is pants I totally agree"

The day hasn't been too bad. He had a sack of presents off the hospital, admittedly he's already planning if he can return them to the shops and get the money back.
Yep that's my Brett !!

The staff have tried to be silly and jovial but any attempt to cheer him up has been met with a stern look from him. He has spent most the day sleeping but hasn't vomited much at all.

Hopefully things are on the up.

The Best News Ever !!!

OMG

We have just had the most amazing news. Brett's results have come back from the emergency blood test

He is now 97% Donor

Can't tell you the feelings we have. So relieved so happy so grateful.

It's just a waiting game now, and that's not a problem. Its worked.

Merry Christmas xxx

Day +23

Yesterday, on day 22, Brett had some cells. Ekkkkk

We were told our consultant let out a huge 'yes' when she saw the blood results.
White cell count 0.6 and Neutrofils 0.3.

I was very mature and cried!
It was a bit of a relief to say the least.

No one knows if the cells are Brett's or the donors but that's a situation every transplant family has to live with.
The blood test that determines the real success isn't done for a few weeks and takes 3 weeks to get the results. So we all know that 'big one' is further down the line.

I'm just happy that Brett has cells and I believe they are the donors.

The test that had been sent off for an emergency check - isn't back yet because it's Christmas !!!
So you start thinking 'sod it' he has cells, let's be happy.

Today, I virtually pounced on the poor doctor who had just come on shift and luckily he must have had a psychic premonition as he said as I walked toward him in the corridor "I'm just looking now"

He said 'Today's bloods are down a little'
I thought - cue internal panic/hysteria -
"but the Neutrofils are the same so that's good, that's what we look at"
I said repeatedly "so your happy, that's good, so your happy?"
I thought - Sarah you sound like a neurotic muppet, shut up
"yes we're happy"

I walked away feeling on top of the world even though white cell count down to 0.4
But Neutrofils stayed at 0.3.

The Neutrofils have to be 0.5 or above for 3 consecutive days before Brett can be allowed out of strict isolation. Today is Saturday, Christmas day is Tuesday ! It's looking like its going to be a very quiet Christmas with him in that room, but hey who cares.

Blimey I'm not asking for much Santa, just bring me more cells. Please.

Day + 20

The past few days have been a bit of a mental and emotional challenge.
Brett's cell roller-coaster has come to an abrupt end with no cells being present at all.

He had a good count Monday , white cells 0.8 & neutrophil 0.4 but since then nothing.

The hospital have sent that blood sample off to another hospital for an emergency test to see if the cells are female or male.
It is convenient that Brett had a female donor as it makes it very easy to see what's present under the microscope.

The doctors started talking about Plan B yesterday and my heart sank.
Plan B is obviously only actioned when plan A has failed.
Plan A being the transplant.

I couldn't believe they were really saying the transplant has failed already?
Apparently yes.

After a long chat (moan) to a doctor today I think I understand it all a little more.
Brett's blood results have been a little too erratic..
The specialist blood test will determine if the transplant is working. 
If they report seeing female cells there will be nothing to worry about and it'll be just a waiting game for the cells to establish fully.
If they see Brett's cells, it will indicate the transplant has failed and they will want to put something else in place quickly.

Kev and I had our donor blood tests today, we will be used if Brett needs rescuing.
I didn't ask what that fully means in the long term because you get the idea from the name rescuing.

They have also started looking for an umbilical cord.
These are another form of stem cell transplant and are quite useful for the doctors as they are literally off the shelf.

A transplant is deemed a failure at day +42 unless there are factors which indicate failure earlier.

The doctor assured me that they didn't think Brett's transplant had failed yet but were veering on the side of caution because of Christmas and New year, they need to get organised early before shut down.

Although the hospital functions with a skeleton team, non urgent diagnostic tests and procedures are put aside till after the holidays, labs close and non contact staff have time off.
That office worker who is given the week off, is the very person that can analyse the database of the tissue types of cords in stock.

I am really starting to hate Christmas this year.

So we have been put through the worry and HUGE stress listening to plan pigging B because of the happy holidays ?!?

Baa frickin humbug

Day 18 Contrasts

Today started very early, 5:48 am was the time I received a morning text from Brett.
We had made arrangements to FaceTime whilst Poppy opened her birthday presents.
Brett was feeling particularly sad because he's not home for Kev and Poppy's birthdays today.
We had lots of different FaceTime plans arranged so Brett could still feel involved.
Poppy had finished opening her presents by 6:35am and Brett signed off and went back to sleep.
It's 2:40 pm now and Brett hasn't been awake much since.

Poppy got ready for school but said she felt sick and was a pretty white colour, I said it was probably excitement and dropped her off at school.
By 9:35am Poppy's teacher was on the phone saying Poppy had been sick twice and would I pick her up?
I feeble replied 'ahh but it's her birthday'

When I got Poppy home she cried because she felt ill and her birthday was ruined "we have a shit life" she said to me.
I didn't argue or tell her off for swearing - we do.

I had to get mum n dad round to sit with Poppy whilst I swapped at the hospital with Kev.
Happy Birthday! I said then we both acted like parents of the year.
Full of concern for our children ? No
We had a right laugh, well what else can you do.
We have also decided to see which child wins today's vomitting competition - Poppy may actually win as Brett is being pumped full of anti sickness medicine.

After a sad start to the day, it was time for the doctor to see Brett, well me really because Brett couldn't be bothered to talk to him.
I was curious what the doctor had to say but had decided after last Friday, to ignore anything negative.

Last Friday I was told by Brett's consultant that they weren't worried about Brett but they would worry by this Friday if his cells hadn't appeared.
The conversation followed to a quick summary of what 'rescuing him' means, closely followed by a blasé 'don't worry though'.

Cheers for that.
I am quite an efficient person so began worrying immediately, then later thought what's the point ?

Today Brett not only has cells but meaty ones.
White cell 0.6
Neutrophil 0.4

The doctor had his fingers crossed and said he just hoped they stick around now. I'm sure they will.

Meanwhile Brett and Poppy are fast asleep. Altogether now ahhhhhh.

Popstars visit.

It was a nice time on the ward yesterday afternoon. A nurse told me that some pop stars were visiting and she couldn't tell me who in case it got out but maybe I should wake Brett up.

5 minutes later, after me trying in vain to guess, she told me bursting with excitement it was JLS.

I woke Brett up, got a chair and trundled his drip stand so he could watch from the tiny window in the front door of his room.

JLS were just visiting the cancer ward and it had had to be kept secret because the hospital couldn't afford the media being camped outside nor thousands of screaming girls trying to break into the cancer unit (its more used to screaming teenagers trying to break out)
Even the staff weren't told until an hour before.

The sad thing about that is none of us got the chance to get the siblings involved.
Poppy adores JLS.
That was the reason Brett got up to see them, he said 'I'll get their autographs for Poppy'.
Whilst I total understand the hospitals reasons for the hush hush operation myself and the other cancer mums were cringing 'oh no' for exactly the same reasons - our other kids

Poppy sent me a very grown up text when she found out Brett had met JLS:

I know I have no right to be jealous about Brett meeting them.
He deserves all the treats in the whole world
I know better than anyone how poorly Brett is and has been
It's just now and again I think what about me.
Its not just JLS, it's everything.


What can i say? It's true - Poppy like all the other siblings of cancer are deeply affected by what they witness and live with yet are totally overlooked.
People buy presents for Brett as a pick up which is so lovely - they don't get Poppy one.
They say how brave Brett is and yes he's a real soldier.
They don't see Poppy's braveness such as her struggling on to school when she's really worried and upset or being thrust at family because we're busy coping with Brett.
Poppy hasn't had a holiday nor has had a normal Christmas or birthday for years.

People see a poorly child and a healthy one.
I see 2 children both affected by cancer.

Anyway back to JLS
They turned up at the ward and you immediately knew they were there as the two little 8 year olds who had been told to wait by the nurses bay for a surprise suddenly burst into hysterical screaming then ran back to their bed spaces.

JLS started at the TCT (teenage cancer trust) ward first then worked down the wards
HDU is the opposite end to the TCT so it took a little while for them to get to us.
HDU is only a 6 room unit mostly occupied with babies so they had quite a shock when they got to Brett. He's nearly 6 foot.
They chatted to Brett via the telephone intercom, Brett was completely his old cheeky self and started the conversation by saying
"they told me a group was coming ,I'd had much preferred the Saturdays"
Everyone laughed and Brett naughtily passed his phone out to get a picture with them.
I said to Brett that he looks like a prisoner, Brett smiled and said I feel like one.

Day 16

Today started with me at home as it was Kevs night shift.
We swap outside the hospital everyday at around 11:30am.
Last night I decided to try and shake the foul mood I was in by doing at bit of law of attraction work.
Law of attraction is a process which is generally about getting what you want and expect to happen rather than what people tell you is going to happen.

I decided that doctors most definitely don't know everything and I was tired of being told the whole host of could do's, maybe's and might's.

I decide to take matters into my own hands and start planning Brett's home coming. Home coming doesn't mean organising a huge party, though that would be wonderful, no instead it means clearing and cleaning.

I cleared and cleaned the kitchen so well that this morning it looked like we'd been burgled. I can't live like this I thought.
A statement I quickly retracted when I realised it only took 5 mins to clean the kitchen - mmm that will be useful.

Next I tried wet dusting - what!!
When I was told that I had to wet dust the house and mop the floors everyday I started to laugh, though quickly stopped when I realised they were quite serious.

I allocated my little pink bucket for the task as all it had done previously was to just sit and look good on the kitchen top.
I can tell you wet dusting is a drag.
Never mind its all in a good cause.

I was supposed to put up the Christmas decorations next. The boxes have sat in the conservatory waiting for attention for weeks.
I have delegated this task to Poppy.
She can have all the fun of trying to sort out which decorations are wet dustable or not.

I love Christmas normally but this year it's just another reminder that were a sad little dysfunctional family that can't do simple things like go on holiday or plan to eat dinner together on a set day.
People say it's only a day why worry.
I'm not worried, I'm totally pissed off.
It's not a day, its what it means, family fun together time - fun, what's that?

Anyhoo
I arrived at the hospital to find Brett has 0.1 of a white cell, no neutrophil's.
I entered his bubble saying
"Whoop de do, here we go !
hopefully the little cells won't go away again.
Vielen Dank (German for thank you)
And it's great to see you smiling Brett"

Brett replied
"I'm smiling coz you're weird and you scare me"

Charming!

Day 14

It's exactly two weeks since transplant and not alots changed.
Brett still feels very poorly and is vomiting the dark green stuff often.
He remains on the permanent morphine Iv.

The donor cells have been nick named the Scarlett Pimpernel.

Day 11 we had white cells yeah !!!
Day 12 no white cells
Day 13 we had white cells yeah !!!
Day 14 no white cells

We seek them here and we seek them there.

Frustration isn't the word.
Yes I know this is perfectly normal and to be expected blardy blardy blar.

I just want the cells to come up and stay up. I want his immune system to build up and start protecting his body.
Instead he remains tucked up safely in the bubble, totally supported by blood , platelet transfusions and artificial products.

Day 11

5 am is when I started writing this post.
The day has started with a row.

Brett has had diarrhoea which perfectly normal and to be expected.
Not to a 17 year old it ain't, according to a very vocal Brett.
He refused to catch it in a bed pan much to the nurses annoyance.
She very calmly explained that she has been a nurse for 27 years and has seen more poo than Brett's had hot dinners. (apologises if your eating whilst reading this)
She went in to say: The hospital can see a great deal from his poo and is a vital part of the diagnostic process - Hello we know that - he's 17 for Gods sake and it's Poo....... Gross!
The nurse handled the situation well .... Unlike me !

I hate waking up and being shouted at, it really gets a rise out of me.
Am I in the fricking army? No.
Are you really trying to blame ME for your bum situation ? (excuse the pun)
Did I sign up for abuse ? No
Mind you, I didn't sign up for any of this and neither did Brett.

So, he's in the throws of 'oh the shame people want to look at my poo'
I'm reciting the cancer mummy mantra of 'oh you've gotta be kidding me? After all you've been through, THIS bothers you?'

Before I know it we're merrily dancing the gritted teeth dance of standard teenage/ mum woes
I hate my life -
- so do I !
You don't understand
- yes I do !
You hate me
- (should say, I could never hate you because I love you so much )
Instead say - stop with the hissy fit already, you're being a right plonker!

Anyway
He's back fast asleep now, after the nurse assuring him any poo given will be treated in the utmost confidence.
I'm drinking a cup of coffee which will no doubt be the first of many today.

Whilst all this was going on Brett mentioned he has sore feet and hands which the nurse explained could be the start of Graft verses Host disease.
This disease is when the donor cells (graft) start fighting Brett (the host)
I'm nervous now - I want gvhd but I don't - let me explain.

The doctors like graft verses host disease (Gvhd) as it signifies the huge battle thats happening on a cellular level.

Basically, the donor cells know they're somewhere new which isn't right and the host knows foreign cells have invaded his body.

A huge fight kicks off - a bit like an action movie - and the cells fight to the death for supremacy.
There can only be one winner and in this case your cheering for the new cells.

The good part of this is that the donor cells, whilst attacking, are known to kill any residue cancer cells that the conditioning regimen has missed.

No graft verses host disease and the transplant hasn't worked.

The bad part is too much Graft verses Host disease and you die !

I need more coffee.........

Day 8

Today is day plus 8 and it's been a busy day for all the wrong reasons.

Brett has been very sick Many times (dark green!!) and has looked swollen in his face.
The doctors think the swollen is due to all the different products going into him and hope the green sick is due to the mucositus going through his body.

His new cells are due to start appearing soon so really the side effects could be anything.
The staff are keeping a really close eye in him so can't complain.

Well I can and I will complain, ok just have a bit of a moan.
Today I felt a bit low. Not tearful just tired of feeling worried. I want him to start feeling better. Brett just says 'I feel awful' whenever he's asked and he's in pain. I'm weary watching I can't imagine how bad it is experiencing it.
He's so brave.

In a way I feel terribly guilty for being well. No mother should watch their child this ill, whatever the child's age.

More blood transfusions over night. 3 units to get through so another long night ahead.
Never mind maybe the cells will appear tomorrow.

I have been playing the final German phrase to Brett's body ( much to his annoyance) he really thinks I'm a wally but what teenage boy doesn't think that of his mum?

The final phrase is:

Zellen bitte beeilen
Sie sich und anfangen zu arbeiten.

Which means;
Please cells
Hurry up and start working.

Day 6

Today is day plus 6 and things are going well.
We got the wonderful news today that Brett's kidneys have gone back to a normal range.
Phew major relief.

He started being fed by a product called TPN yesterday
It is a food product that goes straight into the blood stream via the central line. There is some talk about the long term side effects being unknown.
The general consensus amongst the parents and staff at the hospital is we will worry about the side effects later.
It is more important these kids have a long term at all.
TPN is the answer to a lot of prayers.

Brett could have done with this form of nutrients all the way through his treatment as vomiting and weight loss have played a major part in his lack of well being whilst being treated over the last 4 years.

Brett's mucositis had gone all the way through his body the doctors think. They can see blisters and ulcers in his
mouth and all the way down his throat. Eating is too painful and pretty pointless a doctor pointed out today because if the stomach has the ulcers then it would be unable to process the nutrients anyway.

He's still sleeping a lot and constantly jumps in his sleep like you do when you've dreamt you've fell over.
Apparently it's another morphine side effect. Small price to pay for the great pain relief the drug offers.

Blood and platelet transfusion tonight means another sleepless night as the nurses conduct obs every 15 mins at the start of each individual bag of blood product.
Obs are temperature, blood pressure, heart rate and oxygen level.

Mustn't moan
X

Day 4

It's day + 4 after transplant and Brett's feeling rough.

His reoccurring e-coli came back but seems contained.
He has had the e-coli infection in his blood a few times recently.

There was a huge debate about the pros and cons of removing his central line prior to transplant. The decision was taken not too, as his most recent central line took 3 hours to put in place when it's normally a 45 minute procedure.
The worry of microscopic e coli being stuck to the line seems correct but I still think the decision was right.

Brett's kidneys are playing up a touch and the doctors suspended some medicines last night. The poor kidneys have a great deal to cope with and can easily get upset -
I can imagine them looking sad saying leave me alone :(

Worst of all Brett's mucositis has devastated his mouth and throat. He is struggling to swallow or talk and is in a great deal pain.
Although he still managed to verbally rip his dad to shreds when kev had organised the bathroom routine wrong haha luckily I had just arrived and was able to save kev (or Brett) or both.

Brett is living on a diet of morphine and ketamine and all the doctors and nurses keep saying is:
This is all perfectly normal.
This is to be expected.
Keep clicking the machine for another hit of morphine Brett.

Bless him. X

Plus day 2

Today is +2 after transplant and Brett is poorly.
He has a blood infection, his mouth and throat have started to melt and just generally feels rubbish.
He's not eating much and what he has eaten so far today has been bought back up.
He has been attached to a pump that delivers morphine and ketamine constantly.
He sleeping a lot and although I have been assured this is all perfectly normal, It's just horrible to see someone you love this ill and not be able to do anything about it.

I am trying to keep a low profile today as I think the department may be trying to decide if I'm losing it or not.

When Brett was having his transplant I decided to play his new cells some welcoming phrases in German.
The phrases were
Welcome to your new body
Please be nice to Brett
I look forward to driving our Porsche.
(it's Brett's ambition to own a Porsche)

The staff asked in bewilderment
why in German? and I answered because the cells were from a German lady and it may take a while for them to learn English.
It's madness someone laughingly said Not as mad as a doctor putting cells into a vein that somehow KNOW they need to get inside bones to be bone marrow and make blood.
Touché - came the look back.

He's the German phrases on his white board.

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.

Last day of freedom

Tomorrow the conditioning chemo starts.
Today Brett is trying to fit in visiting as many people as he can before lock down.
He's also trying to eat as much junk food as possible as that flys out the window with his freedom.
I sit here looking like a Buddha but with hair. I have joined in the takeaway gorge with Brett and am also quitting junk food as a way of supporting him.
I have to say I can't wait.
I never thought I would crave vegetables.

The nerves are building in the house. We are all twitching and snapping at each other.
Although I'm dreading it, I also can't wait to get started.
This horrible event has been hanging over us since his relapse in June.
You gotta get started to finish but as Brett says "that's easy for me to say. "

Radiotherapy Consent

Brett is still at home but has had a plethora of meetings and tests to be completed before transplant conditioning starts.
I write this as Brett is at his ECG and Echo-cardiogram.

You may think its odd me merry blogging away whilst my son has an important test well firstly, he's not alone he has gone with his dad, secondly, he's had quite a fair few of these scans before so not only knows what to expect but could possibly perform the scan himself and thirdly I am typing as I wait for paint to dry in the grotty down stairs toilet.

Kev and I have managed to paint the upstairs bathroom and the downstairs toilet which we didn't entirely think through, as where are the kids going to go when they want to the toilet?

The weirdest meeting this week was with the Radiotherapy specialist.
He was a very nice chap but that detracted little when he started his 'speech'.
The meeting room contained myself, Brett, Kev and then the transplant specialist nurse, the radiotherapy specialist, the paediatrician radiotherapy doctor and another woman who was introduced but I cant remember why she was there.

The chap started talking general stuff, you know, the beige conversational starters to make everyone feel as ease. We're pretty used to those conversations in fact we very often start chatting first to new doctors who haven't quite mastered the art yet.

So the conversation eventually turned to the matter in hand - 
Full Body Irradiation.
The good points are it destroys the body therefore helping the new stem cells take up their new residence. It should reduce the risk of his bodies rejection of the stem cells.
The bad points are it destroys the body.
The risk of dying increases numerous side effects later on in life can include, cataracts  infertility, memory loss and reduced brain function and it increases the risks of developing other cancers.
Yes like chemotherapy, radiotherapy causes cancer.
Blimey.

At the end of the meeting there was the normal time for questions although we feel its better to sit quietly at the minute as we are definitely suffering from a bad case of too much information.
I don't care what could happen in the future, I just want Brett to have one.

Finally Brett went through the formality of signing the consent form.
We laugh about these consent forms, I know they are for legalities and ensure the hospital doesn't get sued but in our case what's the choice?

Well in Brett's case it's death.
We have the transplant consent to sign on Monday....just pass us the pen.

Unsociable Networking

I am in a funk.

Transplant looms closer each day and hangs over us all like a huge dark cloud.

I am a huge dark cloud. I am finding it harder and harder to maintain my plastic smile to the world and fake that all is ok.

It's not ok........It's pants.

I am fed up with everything.

I have cancelled my twitter account because its a benign waste of time really.

I have closed my facebook account because, frankly, I am worried I will have a huge four letter word torraid to some pillock who moans it's hard doing the Christmas shopping.

I am angry and don't really trust myself around people.

'How's Brett today?' they text - when they can be bothered - 

what could I reply...

"Ace, he's ace! he's so excited about all the excruciating pain and misery he's going through but your text takes all the pain away. 

To think you've thought about us for 1 minute out of your busy life makes me swoon with gratitude. 

So glad you texted, what's up? 

Did you just finish the sudoko and have two minutes left of your coffee break? you dumb ass, you complete arrogant fuck wit, you poor excuse for a human being, 

coz, if you really cared, you'd be here, if you really cared you would have visited at some point over the last 5 months, so lets drop the niceties and just go and stick your phone where the sun don't shine LOL :) X "

LMAO at the thought of it.

We're home for a while

We got home yesterday evening after many doctors debated the best course of treatment for Brett - IV antibiotics or oral.
Eventually the microbiologists had the last word. Tablets in hand, we made a sharp exit before they could change their minds.
We got home, had an indian takeaway and watched lots of rubbish that had been saved on the telly box thing. (I'm never really aware of its existence until someone has a hissy fit because the memory left is at critical - whatever!)Brett woke up at 5am and marched into my room to announce he was awake.
If you think cancer mums are angelic think again
My gentle response to him was to yell loudly 'what the flam dunkit do you want me to do about it, and when did you lose the ability to knock?'

Brett decided to make a retreat to the comfort of the living room and watch more junk on tv.
Poppy was awoken at 6:30am and at 7 am was vomiting in the bathroom.
She quickly flopped back into bed leaving me to make the, all to regular call, to her schools attendance line.
Note to self - No takeaway food on a school night at 8:30 pm and expect Poppy to still go to bed at 9pm.

So by 7am I was sitting on the sofa in my fluffy dressing gown desperately clutching a cup of coffee, talking (well listening really) to a teen who had already been up 2 hours, whilst silently wishing I had opted for the 'lie in' today.
Bloody psychic husband.

I have spent most of the day on the sofa. I managed to get dressed, to make toast and to make numerous cups of coffee. Each cup held the hope of giving me some much needed energy.
Alas the energy didn't come.

I seem to collapse when Brett comes out of hospital. Brett walks in the door and the adrenaline I've been living off for so long, walks straight out.

I have some much to do and so little time to do it before transplant starts on the 1/11.
Never mind, must go, they're putting on more Big bang theory - today is definitely a day off.


 

Will we get home before transplant?

Well the title kind of sums up the subject of the blog

Brett has been greedy. He has two forms of e coli. One would have been enough surely?
Both are deadly in their own right and both are created from his inside own body again.

The micro biologists have advised the doctors that he'll need two weeks of Iv antibiotics. That would have us in hospital right up to when Brett's bone marrow transplant conditioning starts.
Not good.

Luckily we have a brilliant Dr who acknowledges that Brett's mind has to be as strong as his body, so he is working hard to find a way to get us home for a few days.

Brett seriously needs to get some rubbish take away food in his belly before transplant, as he won't be allowed any take away food for at least 6 months after transplant.

Least of my worries but important to him.
Teenagers. Tut.

The best laid plans of mice and men

I have had three hours sleep in the past 48 hours.
Brett had to be taken back to hospital at 12 last night.
He had gone to bed feeling very happy to be home and relatively well.
He later woke up feeling cold (always a bad sign) and when I took his temperature, it was the magic 38.

He was admitted at 3.45 am to a strange ward as our usual cancer ward was full. We spent the rest of the night sleeplessly sandwiched between a extremely vocal toddler and poorly new born babies. Oh yay!

This morning it dawned on me that I was sitting in this strange ward whilst Kev conducted our house inspection.
The bone marrow transplant is looming fast and one of the many checks the transplant team do is to check your house is up to a good standard that is able to happily support Brett's little frail immune system when he finally gets released from hospital.

The house must have no dust, damp or mould. I was confident I had no damp but I couldn't swear on oath about dust and mould.
I had cleaned like a banshee yesterday and only had a few finishing touches to do early this morning.

I had meticulously planned how best to 'stage' the inspection rather like you do when your selling your or having it valued.
All my confidence disappeared when I realised Kev wouldn't do my final touches, he's only a man, they don't see dirt and mess let alone deal with it.....was my house good enough without the early morning blitz I had planned?


I am glad to say the house passed and with that, so did Kev, divorce averted.
or so I thought.

I arrived home this afternoon expecting to find a prime condition show home. I walked around each room saying things to myself like "holy shit, you bastard!"
It was so not to my standard I wondered if he even knew me.

He had failed to tidy Poppy's clutter away, the kitchen worktops hadn't been freshly polished and worst of all....I am so ashamed to say this, the mould ridden shower curtain that I was swapping early this morning to a lovely fresh white one...not only hadn't been done BUT he had left the mouldy one fully extended for the inspectors to see in all its grimy splendour.

I forgive him. He's a man and he did well. We are so tired and stressed at the minute we need to give each other a break whenever possible. Perfection has always been my thing not his and we did pass the inspection so no harm done.

Which led me to this realisation - Crikey if my house passed all I can think is how bad do they have to be to fail?

Home leave

Just got home for a few days leave.
Here are the meds!

The newbie next door

A newbie has arrived and I am busy trying hard NOT to listen to the stream of health professionals that are explaining what will happen to him.
Impossible not to hear - its a curtain dividing us not a wall.

They make it sound so nice.
Mum is asking millions of silly questions, just as I did.
Dad has just arrived and is consumed by the local parking situation (anything to avoid the real conversation).

The professionals are very clinical, very X Y Z
But I really know what's coming for them.

I want to cry for them I am sitting hugging my cold cup of coffee thanking god we have our curtains shut.
I am not in the frame of mind to smile and confirm to 'mum' that indeed everything will be ok and this is a great hospital.

I only have enough strength for me today. I will have to make a run for it soon. I need more coffee.

Head down, no eye contact.

Who will stand beside me

Who will stand beside me through my darkest days 
with nothing to receive in lieu of pay
But stand there anyway 

Who will stand if front of me with quivering heart and state 
I don't know what to say
But speak to me anyway

Who will turn in silent horror hide their face away
'Just tell me when its over and
you've had your judgement day'

Whosoever remains will have a friend till death and further 
For those who turn, you do not matter 

Who will offer me their calm and stillness 
when my world is torrid and screeching loud
to those who stay know this
you're a friend true and proud 

by me x

Still in Hospital

Brett is still in hospital, he has had a rough ride again.
The past week has been a bit of a blur.
Brett has e-coli and something completely unpronounceable that ends in cockle.

I'm not dumb just tired. why bother to learn the name of some vile bacteria. - Doctors just kill it now!
the bacteria is from his own body - good that saves me calling in the health inspectors to my house.

On intensive chemo the linings from different areas of your body are stripped away which enables your own bodies 'bugs' to be released into your blood stream. I don't know much more than that because I get sidelined by the phrases 'potentially life threatening  and 'extremely serious' and my favourite 'intensive care again'
Thankfully the bugs are responding to the iv antibiotics - die little critters, die.

Still its been a very testing time, who would think that the nurse taking a set of obs (temperature, blood pressure, oxygen levels) could make your heart beat out of your chest with fear.

This also has been the week of the start of bone marrow procedures. 
You hear nothing but bad news for ages then -Bam

We have meetings and appointments booked incessantly for the next three weeks.
All the baseline assessments are extremely important (apparently) as they help the medical profession ascertain how the bone marrow transplant has effected his general health in the years to come.

What ? did I hear that right - 
Yes.

Our wonderful bone marrow transplant can come at a high cost in the future.

You know what, if we worried about the future and listened to all the never ended stream of negative overtones we would have had a mass family suicide 4 years ago.
Truth is, lets get Brett to that stage and we'll worry then.
If and when he has any long term health problems due to transplant we'll have to cross that bridge then.

The only energy we have right now is just to get to bone marrow, have a successful transplant and get home again.

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

Oh the glamour

Got up this morning after a relatively good night. Brett only got up 4 times for the loo.
So I felt really perky!

I had a nice cup of coffee and whilst Brett was still asleep I decided to go outside the hospital and call my dad to wish him happy birthday.
I saw lots of other cancer parents on the way and enjoyed many pleasant chats.
All good yes ? no!!!

I've just been to the bathroom and noticed I'd left my hair up in a very roughly done high ponytail which I do late at night and expect no one to see (except nurses)
And if that wasn't enough I noticed I had a stream of white sleep dribble down my face.
Oh the glamour I project.

Note to self :::
look in the bloody mirror once in a while.

Peaking Intensive Chemo

Brett was admitted back to hospital last Wednesday.
Today is Sunday and we can see no sign of release for him.
His blood count has crashed due to the intensive chemotherapy.

To anyone who understands; 
HB 8.4 (you have a blood transfusion at 8 so he probably will tomorrow, 
White cell count 0.01, neutrophils 0 - no immune system exists!

But weirdly enough platelets 150, which is in average range, this is because Brett has been bleeding and the Dr has ordered platelet transfusions twice a day for 3 days.

Brett has mucisitus which means the lining of the mouth and throat has been burnt off by the chemo (we've seen this before) but this time it appears that it has continued throughout his body, all the way through, hence the blood in his urine - well LOTS of blood actually.

I haven't blogged before because I have been very tired even though my husband and I take turns staying each night.
I haven't been able to do much even on my nights off at home. Just ironing cleaning - the bare essentials to enable me to get organised for the next days hospital 'shift'.

Brett has been grouchy - I know ....'No Shit Sherlock' your probably thinking....
I would be evil if I were in his shoes, but I'm not even tired because of that.

I think it is just a very intensive hard road we're on.
And a very frightening one too 
and sometimes, just sometimes, being brave all the time becomes a little too much....Its so tiring.

I don't want to be brave
I don't want to put on a permanent smile.
I want to scream "Its not fucking OK....this is not alright....This is Bollocks..."

But I don't, I can't .....So I just go quiet and put all my energy into basic survival mode.

"Smile at the Dr and say Hello Sarah."      my mind says to me.
why ? when I would like to punch him?     comes the reply
"Because that's not etiquette"                 what a shame.

xxx