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.