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.