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!