Home Leave

We've just seen our lovely consultant and she is very pleased with Brett. 

So much so she is authorising home leave this weekend. 

Brett will stay in hospital tonight and have his bloods taken in the morning. He will be reviewed by the consultant on call this weekend and then a bag of platelets will be infused and bam ! 

Hand us our drugs were going home kidda's. 

Wow what a perfect end to a very stressful week. 

With any luck by this time tomorrow I will have my whole family under one roof. 

Bliss x

Day 300 post transplant

Yesterday, Wednesday, was day 300 post transplant and the day Brett received his top up cells. 

The Japanese consultant contacted our team and gave some positive news. 

Apparently, he had never seen a transplant if this kind that hadn't worked. 

In all his cases of reoccurring HHV6 the top up stem cells had been sufficient to control the annoying but deadly virus. 

So buoyed by that happy news, our team decided to put in both bags of stem cell but not the lymphocytes yet. 

The transplant morning was nerve raking. The consultant came to seek consent, which is a form that talks you through everything that can go wrong. It is not a nice form, after hearing all the doom and gloom, you have to pick up your pen and sign that you agree to the risks. No option but sign in our case. 

The big tin pot containing the frozen cells arrived on the ward and you knew then the time was looming. 

The pot was opened and looked like something from a sci-fi movie. The dry ice wafted into the air. 

Then the team careful defrosted the cells in a warm bath and the clock was ticking. Each bag was done individually because they only had a 20 minute time-frame to get then in. 

I can report it all went perfectly with no side effects, vomiting or headaches or anaphylactic shocks. 

Now we just wait for the cells to grow and build Brett's body strong. 

This is what stem cells look like.

Stem cells transplant tomorrow

The stem cells are actually going in tomorrow (Wednesday) and we still don't know how many will be put in. 

The consultant has conducted two more cynerisums to ensure that Brett is still 100% donor,and we found out today that he is, thankfully. 

Our consultant has been liaising with an expert in Japan, as well as many other countries. 

He has been asked the questions, do they put in both bags of cd34's or keep one bag in reserve? 

They also have a bag of Lymphocytes which they normally wouldn't dream of putting in for a normal transplant because they are the strong immune system type T cells and they would normally be too aggressive. 

But Brett's case is so rare the team just aren't quite sure what to do. 

As the consultant said today 'it's a case of, do we act fully and put all our eggs in one basket or do we keep some reserves ?'

The stem cell team came up to see us this afternoon to talk us through the stem cell transplant. It's different to Brett's previous transplant as the first cells were bone marrow and fresh and tomorrow's cells are stem cells and frozen. 

I must admit I wasn't nervous until we were talked through the process and now it seems too real and with the usual pitfalls and risks. 

Brett will start the day with heavy hydration. 

Then he will have IV paracetamol, anti sickness and piriton. 

The cells will arrive in two/ three separate metal containers each holding one bag of cells. 

From the moment the container is opened there is a strict time limit or the cells will die and be useless. 

The team defrost the cells, one bag at a time and then they have only 20 minutes to put them into Brett's body. 

I have been warned that no matter how badly Brett is reacting to the cells, they will not stop putting the cells in. 

As soon as the cells go in, Brett will have an Icy cold feeling deep within him (as they are put directly into his central arteries) and will probably have an immediate headache. 

The ultimate brain freeze haha. 

Then the biggest risk of reaction is from the preserver that the cells are put into prior to freezing. 

Apparently a strong taste of sweet corn will enter Brett's mouth so it's recommended Brett chews sweets to try and not taste it so much. 

Although the team said very often the taste causes violent vomiting.  

He will then have the other bags, if required, and will remain on heavy hydration for a while after and will be on  various heart/ lung/ blood pressure machines for a while after. 

I was excited until this meeting and now I feel nervous, apprehensive, and generally a bit sick myself. 

We've waited so long for tomorrow to arrive and now it finally is. 

By this time tomorrow Brett could be well on his way to perfect health with a healthy immune system. 

Fingers crossed x

Good News

We were given some very very good news on Friday. 

Brett's latest hhv6 result had come back negative which is amazing as we have had to stop every single treatment for it as Brett's body is very sensitive and becomes toxic to drugs almost instantly. 

The good news continued with the most amazing result - Brett is to have his top up cells this Tuesday. 

Our wonderful original donor had agreed to donate again. 

The cells were harvested in Germany and arrived in this country a few weeks ago. They were frozen until the medical team decided the optimum time to put them in Brett's body. 

Next week is going to be that time. 

It feels like the whole world is watching as it is incredibly rare to give top up cells to someone who is 100% donor, is cancer free and who has hhv6. 

I think it's rare because people sadly don't make it this far. 

Our medical team have asked questions about Brett's condition to experts both nationally and internationally. 

The doctors are all waiting to see what happens. 

We are waiting to see if our 5 year nightmare is finally over. 

I am so excited, I can't help it. People around us are skeptical, the doctors are wary whilst we're busy planning our futures. 

Life without cancer or sickness - wow !

Now that's worth dreaming about. 

Day 280 Post Transplant and The Warrior Fights On

Today is day 280 post transplant and the battle for survival is still very much raging.

Since Brett's ICU on the 15th May, he has had to endure:

Being paralysed from the neck down due to severe Guillain- Barre Syndrome

Chronic Sleep Deprivation

Chronic Oedema -Massive and dangerous fluid retention

Extremely Poorly kidneys

High Blood Pressure

Various vitamin deficiencies

His blood vessels in his legs ruptured when the Physios tried to get Brett standing when he had platelets of 3

Repeated E-coli urine infections

HHV6B which is causing the poor engraftment

Constant pain


He still has no cells and has a platelet transfusion everyday and regular blood transfusions although he is 100% donor and cancer free.
Its been a terribly hard time. 

This blog became harder and harder to write as time passed. Every time I tried to put this nightmare into words I found I just couldn't do it and had to walk away.

Seeing the words on the screen somehow made it seem every more real.
It has been an utter hell.

We are very lucky to have Brett here but its been the hardest thing we have ever had to go through as a family and I feel really angry sometimes because for the love of God, haven't we been through enough????

Its not fair, its just not fair, why us? 
Can't fate go and pick on someone else and just give us a break? - that could come across childish but I don't care.

The hospital has been good sometimes but unfortunately they have also had times when they have been very very bad.
I have made three complaints in writing and numerous verbal complaints.

I would like to say the complaints have been over small things but, alas, no. The complaints were about very big things such as:

Not telling us Brett had very poorly kidneys AFTER the nursing team had failed to give him his Kidney protection tablets, we only found out when a Kidney consultant turned up.
And a time when I was left cleaning my paralysed son on my own whilst the nurses button was not being answered. 
This can happen because the nurses are busy but when I left the room to grab a towel quickly, I discovered the nurses sitting at reception having a good laugh and a chat. 
I was livid and its the first time in my life that I went to walk away, stopped, turned around and told them exactly what I thought of them. I told them they were disgusting and lazy and careless and shouldn't be nurses if they didn't want to help with personal care (you'd be amazed how many don't )

There has been poor care, extremely poor doctors (who must have bought their degrees from Ebay) and poor decisions made by Brett's medical team.

The fact Brett is still here and fighting, remains a mystery to everyone really. 
But he is here and the fight will continue until we can all walk off into the sunset together and get that very much needed - Happy ever after.

ICU battle

Brett may have lasted till morning but it emerged quickly that the fight was far from over.
Person after person filed into Brett's cubicle.
Some people I recognised but most I didn't.
The various people introduced themselves but I couldn't take much in. Dr of this , professor of that - I didn't care for titles I just wanted to know what they thought was wrong and more importantly, what they could do to fix it.
The skin specialist thought he had cellulitis
The plastic surgeon thought he could have an abscess in his stomach
The normal surgeons still thought he could have a hole in his bowel

He was confirmed as having the HHV 6 virus - which is a common virus found around us and can attack post transplant patients.
He was also confirmed as suffering septic shock / septicaemia - reason unknown.

Eventually tests confirmed Brett had Gram negative septic shock - a quick google revealed that it was the biggest killer of ICU patients across the world.
Oh God!

I was then stupid enough to goggle the mortality rates for both HHV 6 Virus and gram negative septic shock in a BMT patient.
I quickly added both sets of stats up and realised Brett had a 85-90% chance of death.

Which also meant he had a 10% chance of living -
my mood immediately lifted

10% = Hope

We had hope and once you have hope, even the tiniest glimmer of it, you have the world of chances and opportunities.

Over the next few days my husband and I kept a constant vigil at Brett's bedside.
Kev went home to be with Poppy for a while.
Poppy couldn't face seeing Brett in intensive care again - the first time was bad enough she felt.

It was just as well because Brett didn't wake up, he had periods being conscious but they were times of distress for Brett.
He tried to pull his various lines out in total confusion and had to be calmed down. Luckily he doesn't remember a thing about it all.

After many days Brett eventually was classified as poorly but stable and was able to be transferred on to the teenage cancer unit at BCH.
He remained very ill and was constantly monitored.
But the path of slow recovery was finally beginning.

But even we didn't realise how slow and arduous that recovery was going to be.

The Final Straw

Three weeks ago today, Brett was happily at our home discussing what was for tea and chatting about the football match that was on TV later that evening, all pretty normal stuff. 
He had been experiencing the same amount of weakness in his legs but had finished the course of high dose steroids on the previous Sunday.

At 12 Midday Brett mentioned his back was sore, I took a look and was surprised to see  that his lower back was swollen and bright red. I rang the hospital and much to Brett's disgust, we were advised to go straight in for a quick check up. 
I had called my husband home from work because I had a strange feeling the back was a bad side effect of the steriods. 

My husband arrived home within half an hour and we began trying to get Brett up out of the settee, but we couldn't move him. 
After a lot of pushing, shoving and panicking I phoned the hospital back and they advised me to call an ambulance immediately.

The problem was, an ambulance is supposed to take you to the nearest A&E department which in our case is not Birmingham. Our hospital advised us to try and negotiate with the ambulance drivers to see if they could override the rules and drive us to Birmingham and not our local hospital, they said 'if you have any trouble ask them to speak to us.' 

My heart skipped a beat when we had no problem what so ever, the ambulance even drove with blue flashing lights.The ambulance men were concerned, very concerned and totally agreed that Brett needed to go to the hospital that was up to date with his complex case. By now Brett was vomiting a dark green substance and was in absolute agony all over his body. 

When we arrived at hospital 20 minutes later, all hell let loose. 
A nurse quickly conducted a set of obs and loudly advised the other nurses and doctors that Brett was Code 4
I asked her what code 4 meant. 
She pulled me aside and said 'his heart rate is too high, his blood pressure is too low, his temperature is dangerously high and his oxygen level was falling, code 4 is pretty serious.'

The next few hours are a blur.

Nurses and doctors came from everywhere to work on him. 
I was advised that my husband had been called to come in.
He had initially remained at home to collect our daughter from school and to await news via the phone.

I repeatedly found myself being pushed further and further away from Brett. I didn't mind at all because I realised how serious the situation was getting. 
Tears started stinging my eyes when I realised he could be dying, I kept thinking 'Not after all he's been through, not after all the pain he's suffered over the last 5 years just to get here ....not now'.

As soon as Kev arrived we were both taken into a side room by our normal Consultant and a nurse from the transplant team.
We were given the devastating news that Brett was being stabilised for the move to Intensive Care and we needed to understand he was extremely ill and as he had no T-cells or immune system yet... the situation was precarious. 
They feared he may need surgery as his stomach was swelling massively and there could be a blockage in his bowels or his appendix may have burst.
Surgery would only be performed in a life or death situation as, in Brett's post transplant stage, any surgery would be life threatening.
They kept repeating how they were so sorry !
I couldn't hold back the tears, we were nicely being told the fight was over. 
But we weren't ready for it to be over...ever.

Brett was eventually moved to ICU quickly after having a frantic CT scan. 
Brett was barely conscious. 
I kept having to recite the same information, "Yes, he was fine earlier, he's got ill so quick I just don't understand, no he's had no temperatures, no he was definitely well this morning"

In ICU the situation rapidly worsened. Brett was not stabilising and his blood pressure kept falling lower and lower. The doctors desperately kept trying more and more drugs to keep his blood pressure up. 
An intensive care consultant warned us that Brett would need ventilating as his condition was so serious, then he added that they did not expect Brett to last the night and we should prepare ourselves for the worse.

That was the point that I decided Brett was not going to die and he would make it. I felt so angry, how dare some doctor tell me that !
Kev valued the consultants honesty - I thought the consultant was a fool and didn't know what my son was capable of.
I said that I had no intention of grieving for my son until the time that he took his last breath. 
The consultant added that if Brett made it to morning he may have a chance but it was extremely doubtful.
That was enough for me.

I told Kev that although he finds my positive/energy healing beliefs a load of rubbish, would he please humour me for one night and send Brett as much energy as he could and would he just keeping telling Brett in his mind, he was going to be ok?
Kev agreed to do it for me. He probably thought I was a crazy desperate mum, he was right, of course.

We sat all night in the ICU room quietly willing Brett to live and after what seemed like years, I finally saw the dawn peep through the tiny window in his room.

Game on, I thought.

Auto immune set back

The two other teenagers that I was telling you about have come out of hospital ... And gone back in again.

So far, all 4 of the teenagers (Brett Included) have been in and out of hospital like boomerangs over the last few weeks.

Brett's had an Ecoli infection in his bladder and then was back in hospital again as it went to his kidneys too.

Then, as I was happily (begrudgingly) doing the ironing on a Wednesday night a few weeks ago, the phone rang and it was a hospital doctor telling us to get in to hospital immediately as Brett had a serious line infection.
'He can't have because he's too well'
How quick can you get here? Came the reply from the doc.

His central line is still in doubt as to whether it will stay or have to be replaced. The bug that was living in it, is notoriously hard to get rid of.
Brett had negotiated just having the line removed completely and switching to canulas when the need arose but that has been crushed now by our latest setback !

Brett's legs have stopped working over the last 5 weeks to the point where he collapses. After an urgent appointment and lots of tests with the Neurology consultants and it's been decided that Brett has a serious auto immune problem.

The donor cells that are happily in Brett's body are not recognising it as their new home. So the cells are attacking him as though he's a alien such as they would if they encountered an infection.
The cells have eaten his leg nerve endings and are now munching through lots of other things whilst at the same time, not allowing the bone marrow to grow, which could be why his blood counts are so low.

I write this today sitting in hospital waiting for Brett's blood transfusion to finish and his very IV high steroids to start. Hopefully the steroids will 'shock' the cells into stopping their attack.

Grumpy Blogger

I have just read back on my previous blog posts and I feel I should apologise.
Blimey, What A Grumpy Bumpkin??!!

If I have seemed down, sad and grumpy, please be assured I'm not.
I'm not saying this Post Transplant life is smooth and an easy ride but it isn't that bad either.
Simply because everyday I still haven't lost the sheer joy of us just being together. It still hasn't worn off.

The things the outside world think are so frightfully mundane are actually wonderful, like watching TV on cold, rainy days - 
Eating the same food at dinner time each day - 
Dreaming and talking about a happy ever after for all four of us - 

Life isn't hard but, just the same as the impatient human beings we all are, we want everything now or even better, yesterday.
We don't like waiting.
We are a bit bored of being cooped up at home and not being allowed to go out to dinner or to the shops together but whatever! it doesn't matter so much because we are together at home.

If any family out there are reading this and are about to go through the transplant process, please know that this stage of waiting will be only as bad as you make it.
Most mums and dads will be eternally grateful for their child making it this far and most kids will be bouncing off the wall screaming for freedom !
But its so worth it, so don't be frightened.... honest!

Back to Brett - 
There are 4 teenagers in his transplant clinic and at present, 2 are in hospital with infections.
It makes me go, GULP with fear!!
There seems no reason as to why they're in hospital as their parents are following the rules just as well as we are.

They are not in immediate danger but any infection to a person with no immune system is incredibly dangerous.
I'll keep you posted on how they're doing over the next few days.

Our weekly clinic has been quiet as everyone is just waiting for their T-cells to come up to the magic freedom level.
Brett hasn't had a platelet transfusion for the last three weeks which is great news and maybe....just maybe, his donor cells are getting stronger and increasing in numbers.

But other than that, its all good.....quiet, but definitely good.
x

The Prison, the Mood and Clinic

Last weeks clinic was so hard.

Not hard for any reason other than the fact that I woke up in the mood from hell and I didn't want to go.

I didn't want to drive the the hospital in the early morning rush hour traffic, I didn't want to make polite conversation with a bunch of people that couldn't give a shit about me and I didn't want to play nice with stupid baby doctors.(Consultants only attend clinic occasionally)

I just didn't want to go !!!!!

Now, I am sure that everyone reading this and in the world in general, has had a 'play hooky day' -
A day when you ring in work or school saying you're 'sick' when you're not actually sick but just want a day off ?!
or just a day skipping generally whatever you were supposed to do in life! -

Just take it easy Bro.....

Well in the cancer world - you can't
 
Why? 
Because avoiding hospital checks is a life threatening decision and it's not my life I'm playing with.

So Tough luck !!!

We were on the road by 8 am and arrived at hospital about an hour and half later after a very fraught and stressful journey. (The journey takes 25 minutes in civilised times).

Whilst in clinic - I nearly battered a new doctor - with words not deeds.

I kept my lips firmly buttoned.
But, as my mum has always said, I show what I'm feeling on my face and even by being a silent movie, everyone around was well aware I wasn't happy.

The little lady doctor was busy trying to assert her authority and amazing knowledge but instead ended up looking like a half-wit with PMT and an over inflated ego.

'Sweetie, the village has called and it's missing it's idiot - go home' -

But I swear I only thought it - I didn't say it ..... I just wanted too.

I knew more about feckin Leukaemia then she did ..............Anyhoo,  


I don't think people can ever get what we go through unless they go through it themselves.

But here's an analogy for you:

Having a child with cancer is like being imprisoned for a crime you didn't commit.
But at the same time, your biggest fear is parole.

You don't want parole - there are plenty of other families who have had an early release and that's a very bad thing...simply because they don't all get released together.

Cancer families serve their imprisonment in the hope that on release day everyone who has been sentenced, walks in to the sunshine together.


It doesn't mean that occasionally it doesn't make you mad though, sometimes whilst serving that sentence, you have days when....

Its just not fair.

Post Transplant Day 100 and Still Waiting

Brett's first T-cell test has came and went in a flame of fizzling disappointment.

His cells were 0.00, when 0.3 is the figure that will give us all our life back.

Hey Ho.

Day 100 was last Saturday.

We didn't celebrate.

I'm not trying to sound depressing but it is a very slow climb back to recovery and life, and its littered with constant, tiny setbacks.

Brett is still Platelet dependant - which just means he has to have a Platelet transfusion every week in clinic.

The transplant specialist came into clinic to see Brett last week and said that they are really hoping that his blood count starts to rise by itself in the next few weeks and they will be monitoring him closely in the meantime.

Now, Sarah - Mummy, Warrior of old would have asked a plethora of questions - What does that mean? 

What are your fears? 

What happens if the blood counts don't come up?

What's the next step?

Sarah at the minute just said 'OK' and carried on drinking her coffee.

I am so tired.

Tired of battling

Tired of cleaning the house and everything that enters it.

Tired of the stupid 'clean diet' restrictions

Tired of setbacks

Tired of - What NOW?

Tired of - "For the love of do-nuts, Give me a feckin break!"

I am, on the other hand, very happy.

I am happy spending time at home with my family just watching the boring telly.....together

eating tea....together

talking about the future....together

arguing......together

The novelty of simplistic day to day life has definitely NOT worn off.

Life is great...its just hospital visits and test results and stupid doctors that is crap.

X

Still Pottering Along

Last weeks clinic was interesting. 
The doctors want Brett to try and stay off steroids because there's an order to which the drugs can be removed and reduced and they cant start reducing the other drugs until the steroids are finished which would mean the GVHD has gone.

it stands to common sense really - the next drug to be slowly reduced would be the transplant anti-rejection drug, and the doctors aren't going to reduce that until their happy the GVHD is under control.

Just to recap, GVHD is when Brett's old cells and the donor cells fight, we need the donor cells to have won before the doctors reduce the anti rejection drugs.

We think the donor cells have not only won, but are marching at speed through Brett's body. 
He has new hair growth which is much darker than his previous hair colour, he has his old finger nails being pushed out by his new finger nails. That is driving Brett mad actually. 
Its similar to when you knock a nail badly and it wants to fall off and often does. 
We don't want his old nails to fall off yet because they're not far enough up his fingers and it would be an infection risk and we certainly don't need infection risks at this stage.
Brett is also shedding his skin in great volume. 
Again, it is freaky to look at his skin and see shiny new skin under his flaking body - Its like a sci-fi movie that gives you the creeps.

Brett's feeling slightly better in himself, which is great. 
We are living the quiet life, we've had some visitors but a lot have cancelled. I don't complain at all because I think that's very caring of them.
If someone wakes up feeling a little under the weather, its far better they cancel a visit to us then risk Brett catching anything.
His immune system remains gone - he is having his first T-cell test this week, the day before Valentines Day - Ahhh!

I hope for his sake he has some T-cells but they have to be over 3 before normal life can resume. 
Another teenager who attends the same closed clinic as Brett, had his transplant in September and his T-cell level is still only 0.09.
It does and doesn't matter, if you know what I mean.
Yes, T-cells and a full and active life back for Brett and all of us would be great and is going to happen soon, but for now, its great spending time with each other, no sickness no hospital stays, just watching the telly and having a giggle together as a family.

Its all good in the hood. X

GVHD Rules

Brett has been unwell since his Bone Marrow Test last Thursday.

We did end up driving home in the manic Birmingham rush hour traffic.
And I DID end up drinking half a bottle of wine later that evening! 
Oh the stress. 
I hate driving in busy traffic with all the lane jumping crazy half wits.

Brett has been sore after his procedure - Obviously!
Bones don't like being rammed with needles and do grumble a bit.

But its more an unwell feeling then just the pain and he's sleeping ALOT.
The sleeping could be a delayed side effect from the Radiotherapy he had during his transplant conditioning. 
We were warned of this great long sleep the teenagers have. 
It normally occurs around the 6 week mark, but Brett was fine then.

His steroids have been slowly reduced, in the hope that his Graft verses Host Disease has gone. 
But it seems as though the GVHD is rearing its ugly head again. 
He has stomach ache and has lost his appetite which is major bad news. 
The new cells need lots of calories to convert to energy just to be able to function.

Tomorrow is another clinic day and we shall see what the great and mighty oracles say this time. Or Doctors as they prefer to be called.

But hopefully it will be along the lines of:
"Bone marrow test results are great and here's a magic pill to alleviate the GVHD"

Well you've got to be optimistic haven't you.

First Bone Marrow Test

Sitting in Transplant clinic at the minute. It's going to be a long day.
We were up at 6am so Brett could have some breakfast. 
He had until 7 am to eat and drink and then he's starved for theatre this afternoon.

The little clinic is very cosy. 
Just patients who are post transplant and one parent/carer per child.
It's nice because you know everyone here and it's great watching the other kids getting stronger just as Brett is.

So this afternoon Brett has his first bone marrow test to see how everything is going.
I should be nervous but I'm not. 
I gave up worrying over tests some time ago. Worrying is a waste of time.

It is what it is - is my philosophy.
If you worry for results and all is fine you've worried for nothing. What a waste of energy. And if the results aren't too good, well, worry then.

I just hope Brett's not too far down the theatre list. It takes him ages to wake up after a general anaesthetic.
I don't want to be driving home at rush hour.

Transplant and the Freaky Nails

The hospital did not warn us about this!

Brett had been complaining to me about his nails for about a week or so.
I, being the diligent calm and caring mother I am, vaguely replied 'Just leave them alone or put on some hand cream'

Brett finally shoved his hands into my face last Wednesday and I have to admit I nearly jumped out of my skin.
His nails look as though they are falling off. 
He has yellow nails, a heavy ridge and then pink nails below.

They are revolting!
Sorry sweetie, but they are!

Brett questioned the consultant about his nails when he attended clinic last Thursday. The consultant nonchalantly shrugged his shoulders and said 
"Yes that is a normal part of the transplant process.
When you went through your chemotherapy and radiotherapy conditioning a week before the stem cell transplant, your body effectively died.
The yellow nails are your old dead body and the new nails are the donor cells that took your own cells place.
As a consultant I can tell how far along on your transplant you are, just by looking at your nails."

OMG - Gross and as usual, 
Thanks hospital for the heads up... Not !

 

Busy Bees

It has been a happily busy time, which is brilliant to be able to say.
I get so tired of repeatedly recounting my tales of woe but now its great to be able to say 'its all good'.

Brett celebrated his 18th Birthday last Friday - what an amazing achievement.
I had only ever dreamt of Brett reaching that age.

He received many many cards from around the world. All wishing him happy birthday and saying how well he had done to make it and how brave he was.

We had planned a little house party with a few of Brett's chosen close friends and family. There were to be about 15 in total. The invitation went with the usual strict stipulation - You can only attend if you're well.

I knew we wouldn't have the final head count until the day itself. 
It is very usual to wake up with a sore throat or a bad stomach but what is so unusual is the requirement to then have to cancel your attendance at someones party. 
Most of us at some time have gone out feeling a little under the weather, as we wouldn't want to let the person down by cancelling, but to Brett the risk of infection is massive, so the kindest, nicest thing a person can do, is to cancel immediately.
If in doubt - stay away.

In the end Brett had just 8 people attend his little party.
It was a lovely evening.
I had prepared a small buffet but I just couldn't keep it totally in-line with Brett's strict 'clean diet' so on his 18th birthday there was part of his party buffet he couldn't eat - Bad mother or what ?!?!

He couldn't even have a birthday cake.
Well he could, he just wouldn't be allowed to eat it.
So instead I designed a cake made totally out of individually wrapped cake bars and biscuits, which he is allowed.

I have promised Brett and 18th 1/2 birthday when his T-cells are up i.e when his immune system is fully working.
The whole birthday weekend was lovely. Brett read his cards and inspected his presents, Poppy counted the money that people had generously given him and we all watched TV... together....an absolute dream come true.

Happy Birthday Superman. X

The Donors Letter

I have finally written the thank you letter to Brett's donor.
It was the hardest thing I have ever written and that why I had kept putting it off.
The copy is below and its in its full glory except I have xxxx  which means removed the part about the trinket I sent . 
That's between me and her.
My idea is, if ever a lady comes up to me and says 'I was the donor' I can say 'what did I send you?'

Here it is:

To The Donor For Our Son,

Please let me start this thank-you letter by apologising for its lateness.

Our son had been poorly since his transplant and it has been a very hectic time. He is very well now and getting stronger each day because of your cells.

But, to be honest, the real reason for this letters lateness has been our inability to be able to put into words, simply how extremely grateful we are to you.

Our son has been fighting Leukaemia since he was 13 years old.

We write this letter two days prior to his 18^th Birthday.

His Leukaemia relapsed in the middle of last year, after he had already received three years of treatment including medication, chemotherapy etc.

The decision was made that his only chance of survival was a Bone Marrow Transplant and after the family were tested and found not to be a match, the international registers were searched.

After a world wide search was conducted no suitable match was found except for you.

You probably had no idea of the true importance of your decision to go ahead with the harvesting of your cells, but to our son, you were his only chance of a cure from his cancer and for life.

The only details we have given about you are that you live in Germany and you are a woman. We didn’t know if you were actually German Speaking so in case you were, we spoke to your cells in German everyday after our son received his transplant.

We wanted your cells to know how welcome and loved they were.

We were told the day of your planned cell harvest.

It’s our dear wish that you know our entire group of family and friends were wishing you so well and were praying that the procedure wasn’t to painful nor that it left you feeling too unwell.

We are not idiots and understand only too well, how awful it is to have hospital tests and invasive procedures conducted and we are all so humbled by the fact that you went through all of it for a stranger, someone you didn’t even know.

Words just cannot express how grateful we are to you, for taking the time and going through all that you did, for our son.

You are so loved and respected by us and our entire family and friends. It’s such a shame that we are not allowed to contact you directly or able to share any personal details because when someone saves your child’s life you would always want the chance to shake their hand, look them in the eye and say ‘thank you so very much’.

We have included XXXX in this envelope. You don’t have to XXXXX, we just want you to put it somewhere you can see it and if you ever have a bad day, please see the XXXX and know that somewhere in this world are a group of people who know that your are a complete hero.

You are amazing, you are selfless and giving and kind and just a truly wonderful human being.

We simply can’t thank you enough.

There are no adequate words in any vocabulary to express what you have done for us and for our son.

He now has a chance at living to be a grumpy old man because of you and your amazingly brave and selfless act of giving your bone marrow.

We wish you everything good that’s in the world.

We hope life rewards you in some fabulous way for what you’ve done for us.

And although woefully inadequate, we say - Thank you

Thank you so very very much

Sent with So Much love from the

Recipient’s Mum & Dad

Xxxxxxxxxxxxxxxxxx

We don’t know if you are actually German Speaking but if you are:

Ich danke lhnen so sehr du bist echter Held.

Thank you so much, you are a real hero.

xxx

Mummy the infection risk

Ye gods and little fishes I am in a total spin.
I have a slight cold

I am not a baby or a wimp, I don't care about this cold as its so mild I'm barely able to notice it myself.
But
What about Brett ?

He is not allowed around any infections. This cold could be huge to him if he catches it.

I have embarked on even more cleaning and hand washing (if that was humanly possible).
I am refusing to go anywhere near him to the point he thinks I fell out with him.

Give us a hug - he's says
No you bloody idiot I have a cold, stay away-
There's no need to be like that - he huffs off.

There's nothing for it but to plan an escape route, for him, not me.
Today, I have evoked plan B - my mum & dad's house.
Praise to the plan B !!!!!

Brett shall be safely placed at my mum and dads for a few hours leaving me to breath my germ infested breath freely. For a few hours at least.

I feel like a rabid dog that needs quarantine !

My Cancer Families - Warning! Sad but True

I am undoubtedly a hard bitch.

Its not a personal insult but more of an observation I have made about myself because of the the past 4 1/2 years.

I used to be soft as a kitten. 
I couldn't watch TV shows without crying.
I had every sad ass twit as my personal friend.
I wanted to heal the world and make everyone feel better about themselves and their lives.
Undeniably - I've changed.

I first noticed this when I started getting 'treatment envy' over other children.
Some children literally sail through cancer treatment.
From the moment they are diagnosed its all plain sailing - no reactions,  barely any side effects, every treatment just works perfectly.
I while ago I realised I had started to really resent those lucky families.

Not for one moment would I ever wish any child ill (well, iller than cancer !!! Please !!!)
but I was seriously jealous of the ease of their treatment.
Yes, I said it .....Jealous.

I stopped being so friendly during clinic appointments.
I really couldn't stand to hear about how little Oscar was doing so well and hadn't vomited once through his chemotherapy and was back at school. Especially when my son had reacted to every medicine known to man, he was rewriting the book on side effects and was only classed as an experiment in the first place because of his diagnoses.
"Blah,blah, blah" was what I heard from these families.
It was the cancer equivalent to listening to someone who's married to Brad Pitt and having to endure details of their wonderful bedroom exploits. 

Whatever !!... please just sod off.

I became increasingly drawn to sad cases - families just like us.
No prognoses? small chance of survival? doctors never seen this before? etc etc
Mum, would you like to go for a coffee? Let's be friends.
The result is: 
I really don't have many friends, but what I do have, are pure gold.

I have met some simply amazing families with warriors of children and teenagers.
I have also read about some of these fallen warriors in the monthly newsletter.
Obituaries are on the back page.
Sometimes the length of this page is overwhelming - Its only one hospital.
I scour it every time, for names I know but I also say a pray for each child and their family.
I hate that newsletter - I long for the day that its no longer needed.

I attended one special teenagers funeral.
It was the saddest, most heart breaking time of my life.
We'd met this teenager when Brett was diagnosed the first time in 2008.
This family taught us 'the ropes' in hospital even though they were only a month ahead of us.
A month is huge in cancer terms.
We kept in touch, followed this boys journeys, celebrated successes and worried for failures.
Brett had just got over PCP pneumonia (which is deadly in cancer terms).
He had beat it and had been home from hospital for one day only when we got the 'terminal' news from our special family.
When I heard this teenager was dying, I cried for a whole day solid.
It wasn't me being soft, it was me being totally devastated.
This teenage had fought for 2 1/2 years and had endured such atrocities and fought and fought and fought and had never for one moment ever given up.
But something or someone had other plans. 
He'd died after months of cancer eating him up.I have never got over his death and I don't think I ever will.

The trouble is there's no typical death reassurance with child cancer:
"Well he had a good innings" - no he didn't
"He lived life his life the way he wanted" - no he hadn't
"He brought this on himself with his lifestyle " - no he didn't

You're only left with Why? and what's it all about?
The most honest thing to me, was at his funeral, the vicar started the service by emotionally saying:
'Please don't ask me to justify a child dying of cancer because I cant.
Its just simply terrible.
I only know what I believe and that's that God knows things we don't know and we wont understand fully until we are in the kingdom of Heaven ourselves'
I found this start to his sermon beautifully pure. 
Pure in faith yet lacking religious smugness.


Too the present day:
  
We have a wonderful fantastic friend (and family) who is really close to the end of his Leukaemia Treatment.
He's completed 3 1/2 years of hell and treatment/torture which ends in March 2013.
Today, he is in hospital having transfusions of blood and platelets and the hospital have literally spent all day trying to access a vein that would work - last time I heard from his mum they were working on his feet for vein access.
This bab is totally so amazing.

Hang in there Mr. 
Nearly there sweetheart.You are so brave. 
Eat more Pringle's!

And Also a beautiful lovely gorgeous girl (and Family) we know,
had a huge 8 hour operation yesterday to remove a massive tumour for the third time in three years. 
She's also had tons of chemotherapy and all its torture. 
She's done so well and also endured so much and is such a completely beautiful lovely individual.

You are a brilliant, sparkly, special little lady - You can do it, keep going, you are a constant inspiration.


If breaths and dreams only had power 
There wouldn't be a need for any treatment.

First Clinic

Brett got discharged Monday evening.... Simply Divine, yet busy!

My time since then has been spent cleaning, cooking and unpacking.
Its amazing how much junk you can ecru in a tiny hospital room.

It has been very challenging to get our heads around the 'clean diet' rules and all the medication Brett has to have.
We have enjoyed our time at home immensely, we all take such basic things for granted.

Today was Brett's first clinic day - Eppp!!
Transplant clinic is held on the normal oncology ward as he (and the others) are too vulnerable to infection to attend normal oncology outpatients.
I was so happy to attend this clinic, which I realise is a weird response, but it was a major mini goal just to get there.
Its important to set mini goals when faced with a long road.
Our next mini goal is when Brett is deemed well enough to only need to attend clinic once a week.

Transplant clinic was only attended by Brett and 2 other amazing teenagers who had also recently had Bone Marrow Transplants.
They are so funny together comparing aches, pains and ailments, they sound like little old men.
When really they are super heroes.
It did shock me however, just how many staff were allocated to this clinic.
Doctors, specialist Stem cells nurses, sisters, support staff, Teenage Cancer Trust staff attended, and the Clic Sargent social worker.
For 3 patients !!!!!
So many people were in this ward it was standing room only (for us, the patients got the seats)
What it did make me realise was:
The NHS are far to short of resources to allocate 'jollies' for staff.
The staff must all have a specific job role and responsibilities within that clinic environment or they just wouldn't be there.
Just how ill is my son deemed to be ?

Anyhoo 
Everyone commented on how well Brett actually was -
He doing amazingly well.
I was asked to complete an in-depth food/drink diary for Brett, which I have done many times before.
I announced today, that it would be futile writing such a diary for Brett as it would take me all day - he eats and drinks sooo much.

His bloods came back brilliant
Neutrofils of 2.7 -
2.7 PEOPLE!!!!! - that's sooo ace.
He had a Platelet transfusion and then we were on our way back home.
Back Monday for his next clinic appointment.

I am so happy - Life is good.

I feel indestructible, but life around us isn't so good at the minute.

Day 39 Discharge?

We have had the most wonderful weekend.
Brett was released on Thursday and had to return by 8 am Friday.
Unfortunately the day didn't go too well as he needed a platelet transfusion and that took until 5:30 pm.
When there's no platelets in stock you often wait hours.

Anyhoo, Friday night at home all 4 of us was just indescribably brilliant.
We talked and decided we should have our Christmas Day on Sunday.

You can't really replace Christmas day so we just wanted it out of the way and to move on.

So I went shopping Saturday to but a gift for each of them and for my mum and dad whom we had invited for Christmas day dinner - nothing expensive, I warned my husband when he nipped out to buy something for me.

The presents were under the tree Saturday night and weirdly enough it did feel a bit like Christmas eve.

Sunday/ Christmas day arrived and it was just a wonderful day. The meal I cooked was nearly quite edible !!
And our few precious friends and family texted us Merry Christmas.
I would sum up the whole event in four words - Strange weird brilliant grateful.

Today Brett is back in his bubble room waiting to see if he's classed as well enough for total discharge.
Total discharge including Monday Wednesday and Friday back on the hospital ward for checks, blood tests etc.
But another step forward none the less.

I can't help but have an excited feeling.
Could our luck be changing ?
I have a sparkly feeling it could.

Day + 35 Overnight leave?

Today is tantalisingly teasing.
Brett has been told he could be allowed home tonight for overnight leave , then back tomorrow for bloods and checks then allowed weekend leave to return Monday for bloods and checks and then ...... Full discharge.
Eppppppppp.

Last night could have been our last night in hospital ... Or it may not have.

We are so close to the finishing line we can almost taste it.
The sweet smell of freedom.

Ok, not freedom exactly
Brett will be coming up to the ward three times a week for bloods and checks initially. Then it goes down to twice a week and eventually once a week.

It makes me realise how much he's been through and how precarious the situation still is but Sod It - I am so happy.

Brett still has to be signed off his meds yet.
This is to prove Brett (and another) is proficient at timing and working out all his various meds.

Last night was our first 'lesson' and it went fine except for Brett getting annoyed.
Why are you showing me and explaining my medication when I've been doing this for over four years?
Valid question I thought though he's going to hate the answer
Because this is exact medication and if you go wrong you could make yourself very ill or jeopardise the whole transplant.
Cue - grumpy teenage outburst
I thought this was gonna be all over, I thought I'd be able to go and just live my life, not have to spend the rest of my life counting stupid tablets.

The nurse replied calmly 'the tablets will be reduced to less and less eventually but you are going to be checked out for the rest of your life so get used to it'

I couldn't comment.
Im just happy he's lived.
So many don't make it
In my eyes it's what's a few tablets. Shut up Boy!

I am off now to wake Brett up so we can go and do his 9am meds.
This is going to be fun!