New Blog

Thanks to everyone who has followed our journey

Much love to anyone who is on this path now - I send you massive love.

There is a book coming soon called Because of Brett

xx
Sarah

R.I.P. Brett Woodier

This is my lovely son.

The one who I've been talking about for the past 5 and 1/2 years whilst he so bravely battled Leukaemia.

Rest in Peace my angel but after what torture you went through down here make sure you party hard in heaven too.

Brett Woodier 

The Real Superman

18th January 1995 - 30th December 2013

Right Then

First, I am going to apologise to my followers.
I thought I had deactivated this blog but received an email via Amazon Kindle telling me I hadn't.
So please accept my apologises if you are a faithful subscriber who has sat patiently waiting for an update.

Allow me to update you all.

All had been very good after the top up cells in September, we were even allowed to go to the seaside for the day in October, a day now we are going to treasure forever.
At the end of October Brett's cells still weren't appearing and he had started sleeping all the time.
And I mean ALL THE TIME. 
He was barely able to keep his eyes open and would just about manage to get up and get into the car for his twice weekly appointments at the hospital.
Obviously this started causing major concerns and many test were run.

In November 2013 Brett underwent a vile Liver biopsy which had to be performed in a very rare way due to his lack of cells. 
Instead of the biopsy just being taken from his abdomen a surgeon took the biopsy by cutting into Brett's neck artery and feeding equipment through it right down to the Liver.

On the 23rd December we received the devastating news that Brett was in complete Liver failure and would need an urgent Liver Transplant or die.
Brett's Kidneys, lungs, heart and brain were also showing signs of intense damage.

The various and many consultants from the different departments converged around Brett's hospital bed and tried to find a way forward.
Could they perform a Liver transplant on a patient with no immune system? How quick could a liver be found? what about the kidneys, heart lungs etc.

The biggest question was that, as Brett was so toxic his body would not tolerate any painkillers unless.......he was placed on palliative care.

Brett took the incredibly brave decision to agree to no more treatment. 
He had had enough and could not live in the immense pain no longer, he asked to be allowed to die.

All the consultants who had worked so closely with him - some for the 5 1/2 years - were devastated.

I could hear no more and went into the toilet in Brett's room, desperately trying to take in the fact that my child was about to die. 
Two doctors followed me in and were talking - 
'Does he have any chance?' I asked one of them
the consultant replied 'this is Brett, he has recovered from things as bad as this, that's why we call him superman'
another consultant put her hands on her hips and with her head down simply said 'I refuse to believe hes dying'
'is he dying?' I asked them both and they simply nodded. 

No Liver could be found within the very quick timescale that he was deteriorating in and even if they could there would be ethical questions to ask about whether the operation should be allowed to go ahead - 
He simply didn't have enough time left.

Brett came home on Christmas Eve to die and spent the time in his own bed in our living room until he finally passed on 30th December surrounded by the people he loved and who loved him so very very much.

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.