Thursday, 1 December 2011

Give me the Strength ... Please xxx

My unkept diary of 'Back then' kind of ends there.. Not that that was the end, oh no, theres more, so much more.. But for this part .. You will have to bare with me.. 
For those of you that found it hard to read, I would think carefully about taking the next steps with me.. Because I write from the heart.. And as painful as it is for me is how I word it, I won't sugar coat anything.. Not that my words will be able to touch the sides of the pain..
As I've said before, I'm not negative, I just have this unnerving ability to sense things 

I'm going to give you an example of that.. Just  one..
After spending 20mins with my dad.. He was an alcoholic and more often than not, his company would be something I dreaded (although that's another story!) 
on this occasion his company was close to being perfect, he was 'my dad' the man that drink would often turn him  into a stranger that I really didn't like very much..
Those 20 minutes were priceless, my dad was a pleasure, he asked me if I loved him.. I replied "desperately" 
He kissed me on the cheek and began his walk back towards town.. Now. usually I would have to beg him to leave giving him a fiver to spend in a few more cans!

This time however it was like a fairy tale .. Surreal ... 
The love I felt for my dad that day was indescribable.. 
Something made me stand in the door way of my salon and watch him walk away into the distance.. Watch him disappear into fog that shadowed that mid January day..
As I closed the door.. I knew that I would never see my dad again, but if that was the case .. I'd had the nicest 20 mins that I'd probably had in the last 10 years... Just days later my mum called to say that my dad had been in a road accident.. He had been run over and killed.

So when I tell you that I knew Baileys cancer would come back.. It comes from same place.. I don't know how to describe it.. It's kind of like a whisper from someone,  who just wants to warn me.. 

70% of children diagnosed with Neuroblastoma relapse within the first year... 
We were told.. If it does come back bailey has already had ALL of the treatment available at this time.. There will be nothing we can offer you.

So as you can imagine.. Every time Bailey complained of a headache, I thought it was a brain tumour, every 24 hour bug was a bloody nightmare..  I was never obsessive, In fact we hardly ever visited the doctor, it was just our usual appointments at GOSH..  2 years... 3 years..... Life is almost "Normal"... I kid you not... 4 years and we then approached that 5 year marker... Most children that reach 5 years make it.... Could my instincts be wrong? Jesus Christ I hope so... We now go to GOSH as "Follow up patients" Follow up clinic means that we are in the minority of children that actually look like they are going to make it..... 6 years..... 

Bailey has started secondary school and is loving it, he's started sea cadets and marches like a true hero... (He already is mine) he never misses a Tuesday or a Friday session... (Despite that he seems to be waiting AGES for his uniform!!)

Desperate to remove every trace of cancer, bay asks to see the consultant about having some tiny blue dots removed (During radiotherapy they had to permanently  mark baileys tummy with 3 tiny blue dots,  this would be where the laser would aim) Bailey has a huge scar stretching the full width of his tummy From where his tumour was removed .. I'd say "Bay, you can't see the blue dots, I can't believe you can be so bothered by them, they are tiny.. To which he would reply "mum, look at my scar, that proves that I'm  a survivor, blue dots show that I'm not normal.. 

Our consultant was great, she said "Bailey I will happily arrange for these to be removed, but they will have to be cut out, it will be a little painful and you will have 3 scars" When can we do it bailey asked?

We were in within two weeks.. After the op, bay hugged me and said "I'm sorry mum, I know you don't like me having things done, but thank you, I feel like I'm normal now"

We will be 7 years out of treatment come oct 2011...

Gavs Birthday,  sept 28th I decided to book a day and a night out for us all.. The boys and I chose this little inn in Oxfordshire,  on the Friday (we were due to leave the sat) Bay said he didn't want to go to sea cadets.. He'd never missed one and the week before he came out in Full cadet uniform.. He looked so tiny yet like a true hero, amazingly strong.. He marched with his head held so high.. I don't think that I have ever been so proud of my son.

He just said "mum, I just don't feel good, I can't tell you why, I just don't"
I gave him some good old calpol and he had an early night.. Not feeling 100% on the Saturday, I said "Bay, shall we cancel going to the Inn, we can go another time?" Bay said, no mum, I'll be fine, can I just have some calpol?
The Inn was in the middle if nowhere, it was lovely, we had a drink in the garden and walked through a lovely forest..
Bay was quiet and not himself, but otherwise not too bad.. 
By evening Bay had pain all over his body, hip, leg, neck.. Gav hoped and tried to make me us all believe it was growing pains .. I knew exactly what it was.

12am, 4am bay was crying in my bed.. I just rubbed his legs and topped him up with calpol.. I rang NHS direct, the doctor said I would need to contact my consultants from GOSH.. At 8am we were heading home.. I called my consultant on her mobile (she gave me her own mobile number way back, she's a wonderful lady) she simply said, Beks, head straight for Watford .. 
I can't tell you the size of the lump in my tummy.. All I can say is that it is so big s can barely breathe..

Arriving at Watford, they had been expecting us.. We had a room a nurse and our notes were there... 
They put Bay on morphine as his pain now was severe..

It broke my heart when he said "mum that pain killer took away all of my pain, even the pain I always have.. My little boy never complained of 'Always having pain' I had no idea he had pain everyday.

Bloods showed fairly normal
Chest X-ray was clear
Ultra sound clear
CT scan clear

The only thing that showed was that bailey had old  cracks in his bones that he may have damaged ages ago.. And his CRP count in his bloods were high.. This indicates a bone inflammation somewhere????

Bailey said that on thursday he had done trampolining!!!! This could have been it.. I wasn't so sure.. But other bloods were normal so I went with it.. We stayed a couple of nights on Iv antibiotics and Bay improved brilliantly..
Thank god for that!!

Yet.. He never quite made it back it school, he did one day.. He wasn't right and I knew that it was something more than bloody bone damage!!!
Back to Watford..
CRP are even higher.. They do a urine test to check vma levels.. This is an indicator for Neuroblastoma ... 24 hours we had to wait for the urine results.. poor Bays very poorly... 

When I called to get the results.. The nurse (Who is just lovely) said "Becki I'm so sorry..( My heart sank, I though she was going to say its positive) but instead she said, could you bring Bailey back to the hospital for another urine sample?" why? I replied "Becki, the doctor sent the urine to the wrong hospital.. !!!!

For F**** sake... Have you any idea what I've been through in these last 24 hours!!! It wasn't the nurses fault, bless her, she's lovely...
Chris took bay back for another test, this time we were told that can take up to 3 days for a vma and we should never have been told 24 hours!!

Before those 3 days were up at 8am on the sunday I phoned my consultant again.. I'm coming in, I've got a really bad feeling about this.. Can you please be there....
It was her day off, but without hesitation.. She said, I'll let them know you are coming and I'll meet  you there.. 
 Bay was hot, didn't like the light and his head and neck were killing him.. 
My consultant said.. "Bek, I want to do a lumber puncture.. I think this is meningitis... Totally bizarrely I prayed that it would be.. 
Actually really wanted it to be that.. Because if it wasn't there was only one other thing it could be...

Bailey and our consultant get on brilliantly, he trusts her..
As do I...

"Bailey' she said, I need to go into your spine with a large needle, I don't have time to put you to sleep and I want to do it myself.. I'm going to give you has to help with the pain, do you think you can be brave for me?"

My Little boy looked terrified, but said "I'll try"

He was so very brave.. The tears were running down his face.. But he didn't make a fuss...

Back to our room and back on his bed.. My consultant came in within the hour, Gav and I were standing at the end of bays bed, she squeezed my arm as she walked past and sat on Bays bed.. She took his hand and said "Bailey, I'm afraid it's come back" I will never be able to forget the look of sheer terror in Baileys eyes... Tears started pouring down his face, I was a complete mess and so was Gav... We all sat down on the floor or the bed I don't remember which .. Bailey said "am I going to survive" 
I was just a complete mess and couldn't even open my mouth.. She said, "Bailey, it's been 7 years so are going to try and treat it again, your a special boy and we are going to do everything we can

If only she knew how special and precious he was to me...

She said "is there anything you want to ask Bay"
To which my beautiful brave and gentle little boy replied...
"Does it hurt to die"
She said "No Bailey"

I'm crying  my eyes out as I write this because, for some reason.. The strength i had last time.. Just wouldn't come.. And with all the will in the world I wanted to tell my son that it was going to be ok.. But I couldn't .. Instead Bailey took my hand and said "don't cry mum, don't worry, I'm going to win"