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.