Monday, 14 November 2011

In the beginning ....

Mummy..Will there be toys in heaven?

Life is not a ball… but while we are here, we should dance.

After losing my dad in terrible road accident and having to identify his broken body.. I thought nothing in my life could ever be as bad as that.. I was wrong..
Yet during the next few years.. I'd like to thank my dad for never leaving my side .... I love you.

All in my mind..

Kissing my precious 4 year old son goodnight, I pray that tonight he will sleep through, for the last few weeks he has complained of tummy aches.. But the doctors said it was just constipation. Nothing to worry about.
4am.. And again im awoken by the screams of a child in severe pain.
Rushing to his bedside, I find him doubled over in pain, crying and saying “mummy there are “blue worms” in my tummy.

Im so tired, going down stairs to find the calpol, I then fall asleep rubbing his tummy.

Another missed day of nursery, I get an emergency doctors appointment.

Ive a bad feeling about this  from so deep inside my own tummy, its hard to put into words.

“Doctor, im really worried about my son, he has gone off his food, he seems so weak and pale, im sure it cant be “just” constipation?  Hes just not the same child.

Doctor:    Your son has a bad case of constipation, it can be very painful, we will carry on with the Lactose, maybe increase the dose.

I walk away, my son in my arms, im not happy with what the doctor says, but how do you question a Doctor? They know there stuff, right?

Maybe it was moving house? Separating from his dad? Meeting someone else? Having another baby?
The thoughts were making me dizzy!

In the next few days Bailey seem to get worse, We had two visit’s the “star doc”  (An out of hours emergency doctor) Only to be told just the same.

All in all we saw a doctor eight times in eight weeks….
I finally lost it when we were sent to our local hospital, This truly vile doctor ( I have never lost my anger for this Doctor, so I will refer to her as “The Vile Doctor!” Doctor commented that she had seen me twice before with my son, just weeks prior!
“There is a problem” she said.. But the problem is here “Tapping her head” Insinuating that is was “All in my mind”

I do believe that I screamed at that point!!

A paediatric Doctor (Dr N) was in our local at that time,  Came to see what all the fuss was about, and
Offered a second opinion…

Dr N..  felt Baileys tummy.. Then turned to the (vile) Doctor and asked why she failed to find the Tumour in my little Boys tummy, now the size of a grape fruit?
Stopping myself from assaulting!! That (vile) Doctor, I burst into tears..
She said it was constipation, I sobbed (wanting now to believe her diagnosis)
The “Nice” Doctor who I will call Dr N sat me down and explained..
Bailey has a tumour, I don’t yet know what type, but I believe it to be CANCER!!!

From constipation, to “All in my mind”
To a Tumour… to CANCER
Surely I was going to wake up and it would all be just a bad dream..?

I ran out of the hospital, calling Baileys Dad, My partner, my mum…
Crying… Baileys got cancer, hes going to die.

Go home, pack a bag for the for see able future, do what you need to do at home and return here tomorrow morning, where a taxi will be waiting for you, you will be going straight to Great Ormond Street (GOSH)
They will be expecting you.

Talk about a whirlwind, I also had to say goodbye to my 6 month old son Morgan, what would he do without me? How could I leave him at such a young age?
Knowing he would be ok with his daddy (My now husband Gavin)
I packed our bags… sobbing uncontrollably.

The hospital arranged for a taxi to take us to GOSH, Bailey, myself and Chris, baileys dad (my ex husband)
We began a journey, no child or parent should ever to take.

Arriving at one of the most famous hospitals was just a blur..
Take the lift, past the shop, 6th floor.. Follow the “Giraffe” footprints!

Shaking every step of the way, my little boy in my arms.. We stepped out of the lift into what seemed like another world.

Desperately ill children, with no hair, tubes hanging from their tiny little bodies.. Did this sort of thing go on in this day and age..?
Some say.. “ignorance is bliss” I must say, at that point I would agree with them.
Stopping to stare rudely at a little girl that we passed coming out of the other lift, jesus wept, ive never in my life, seen a child look so sick, and as if hanging on to life for the sake of her broken mother walking beside her..

I remember saying to myself in my head.. “please god, what ever cancer Bailey may have, don’t let it be the same as that poor Childs. got

The Tests..

I think this may have been one of the worse times for me and Bailey, I never knew so many tests even existed? Some were ok, others will haunt me forever..
I wont go into the depths of all the tests, but basically.. They were trying to find out what type of cancer, if and how much it had spread..
Three gruelling days of test after test after test, we were called into a room, a tiny room, the sort you have nightmares about.. My husband was with me, holding my hand really tight, Chris was opposite with his partner Suzie..

Our consultant had a look on her face, one that needed seldom words..
“Bailey is a very sick little boy” she said.. He has a particularly nasty form of cancer NEUROBLASTOMA….  This cancer comes in stages, Bailey is in stage 4, when asked by a voice in the room (I don’t know who asked to this day, I might even had been me) What does stage 4 mean? To which she replied “there is no stage 5, 4 is as bad as it gets.
I remember at the point asking if my precious little boy was going to die? She looked down and said “we will do everything we can for him”
“We will have to start a protocol straight away “Rapid cojec” Bailey has a fight on his hands just surviving the treatment.”
Make today count.. Because tomorrow is promised to no one …
Picking myself up from the floor, finding the breath to be able to speak.. I said, “my son is not staying here, hes not going to die here, sick and full of chemo, im taking him away.. I really thought that we could just run away and curl up and die together somewhere beautiful.
My husband was crying, Suzie was crying and Chris looked as numb as ive ever seen a face.

My consultant then said that “by law, she could treat my son, and would start immediately

That feeling of not being able to breath, will hit me again and again throughtout this journey.

How was I supposed to go back to a room and face my “Possibley Dying” son..?
As I often did, from somewhere I found the strength to go back to my son, he lay on a bed, he looked so tiny, Nurses were connecting him up for a blood transfusion.. Just watching the first drop of someone elses blood going into him, blew me away.

Having “fresh” blood as we called it, became a dailey routine.. Now would be a good a time as any to thank those that give blood…That would be a thank you that really does come from the bottom of my heart.

This room would become our “home” for next few months, it was ok.. Clean, bath, bed even tv and dvd.. I will never find a fault with the hospital or staff.

Saying goodbye to Gav, not knowing when I would see him again? Asking him to kiss Morgan every night and day for me.. Made me cry more..
I felt so alone….

The next morning, Bailey was due in surgery to have a “Hickman line” fitted..
I was given leaflets to read… so much to take in.. I just had to trust the surgeons…
The hickman line will be the direct route for the chemo into his little body, also for bloods and meds… avoiding needles daily.

Bailey awoke, tearful, crying to go home.. He was scared…The feeling was mutal.. Chris had arrived..   The anethatist came in with forms for us to sign.. Forms that signed our babys life away… I couldn’t even hold the pen.. Chris had to do it.

That walk to the theartre is one I wont ever forget.. Trying so hard not to cry in front of my little boy was so hard.. Id never left him with anyone, other than my mum.. I was about to leave him in the hands of complete strangers.. I wouldn’t let go, even after he had gone to sleep.. I was pulled off.
I felt sorry for Chris, he tried to comfort me.. I just remember saying.. “you cant help me anymore”

The two hours passed quickly,  Bailey was pushed back into our little room.. With these tubes coming out of his chest.. Quite horrific for anyone to see, yet Bay seemed to just accept the the fact that they would now be there for a while.. They became known as “wiggerleys”

Further tests..

The tests were now complete (for this stage anyway)
Our worse fears…
Bailey has Stage 4 Neuroblastoma, A large tumour in the adrenial gland, with tenticals that wraps itself around other organs, his kidneys, liver  and spine…
“That takes us back to the “Blue Worms” Bailey felt in his tummy, They grow so fast that he would have felt them move inside him” God, its like Alien.

The cancer had  also spread,  he had it in his bone marrow and 95% of his bones showed active disease….  No one  could survive that, surely? Let alone a small child?

Chemotherapy had to start straight away.. So many leaflets to read, facts, side effects.. Its so hard to take in..
First things first, I had to try and explain to bailey that he would become very sick before he could get better, also that he would lose his hair…

The sickness started on day 3.. It was horrific, so violent.. We had to try so many different anti sickness drugs before we could find one that suited him.. He was losing weight by the hour, he couldn’t eat or drink.. So spent the next few months on a drip.

He became really depressed… as did I.. The play specialist would come round everyday.. Trying so hard to get a smile out of Bay, I wondered if I would ever see my son happy again..

Jo (the play specialist) would say, “Becki, go and get yourself a coffee, we will be ok wont we bailey” Bay would never respond, I would never leave..

Untill one afternoon, I thought if I don’t get out of here now im going to go insane, I took jo up on her offer.. Running to the lift and pressing the button. Waiting seemed to long, so I took the stairs.. All 6 floors!!!  Ran through the main enterance of the hospital and just stopped…  Took a huge breath of “fresh air” and ran all the way back!!

Jo laughed as a ran back through the door, im fine I said.. That was great!!
Just knowing that I could escape, if only  for 5 minutes, was all I needed to know.

The following day, bailey became neutrapinic.. This means.. He had no immune system.. So any bug he caught, could be deadly, including the “common cold”
This was tough for us both, it meant that bay could not  ever leave the room, we were what they call in “isolation”  This also became part of everyday life..
Several days after being stuck in that room… I asked one of the nurses to find me Jo, I didn’t need to ask her for her time.. She told me to go and not come back for an hour.. I think she could tell by my face that I was close to losing the plot… I left quick, as Bay was asleep.

The first person I spoke to was that little girls mum, you remember, I told you about, as I walked out of the lift…   I just said  hello and She broke down, went to pieces, I didn’t know what to say to her? So I asked the question… “What’s wrong with you’re daughter?” And guess what…
Her little girl had Neuroblastoma stage 4...
Oh, so does my son I replied..
She just hugged me, and told me how sorry she was…

My heart sank… I was trying to be positive for her, as she was for me.. But some how we both knew.. They were just words, empty words.. But our eyes seemed to be filled with same fear…

We would always smile at each other…   I would always pop my head through her door and ask if she would like a cup of  tea?  Her daughter had been diagnosed 4 months before Bailey, We were on the same protocol.. So I would follow her nightmare day by day..
 its funny, I longed to find someone who was in the same shoes as me.. Now, I wasn’t so sure… You don’t wish this on anyone.. Yet believe, that there maybe a small comfort knowing that someone can tell you that its all going to be ok.. If  im honest, im still looking for that person now!

Day 10...
Bailey awoke quite bright and said that for his dinner he would like a MacDonalds happy meal… He had not eaten in days, so this was great.. But where was I going to find a MacDs?  I hadn’t ventured past the main enterance and didn’t know London at all.. Lucky for me, Bays dad turned up..  I sent him off to find one.. He came back an hour or so later with a stone cold happy meal!!
Bay was pleased, although he hardly touched it!!

Some thing made Bay pull at his hair (he hadn’t lost a single strand…  then between his finger and thumb he had a chunk … he pulled another and another.. I just remember putting my hand over my mouth to try and hide the terror in my face…  Bailey was fasinated by it…  He was filling up the happy meal box with his hair, giggling with each hand full… I wanted to cry, but the fact that bailey was so amused by it.. Kind of tickled me too!!

The following  morning told a different story, Bay woke up feeling really poorly and he didn’t have a hair on his head… For the first time, my little boy looked like a cancer victim, someone who now would have to begin the hardest fight of all…The fight for life.

I found a lot of comfort talking to the other parents, we all became very close, very quickly, we were the only ones who really understood how each other felt..

The thing I did notice is how one day someones child would be so ill, and the next day.. That child would be up playing.. Children never moan or lay in bed if they don’t have too… unlike most adults!!

The lady next to me became a good friend, she was Indian, and used to save me a bowl of her husbands amazing cooking!! Her little boy had leukaemia, so satisticly his chances of survival were about 70% better than ours...
He was a real cutie, bald..but had the biggest brown eyes id ever seen..

We would sit outside our rooms on the floor and talk for hours about our love for our children and our fears of losing them..

I had at that point never known anyone lose a child…
Her little boy seemed to be going down hill and becoming very sick indeed, I kept telling her that he was going to be fine.

The doctors would do there rounds every day, pop in and ask how we were and what the plans were going to be and the results of yesterdays treatment.
Not a lot to say to us this particular day..

Going next door, leaving mine open.. It seemed like just 5 minutes or so.. I was startled by my friends screams… She just shouted “NO”
I was terrified.. I closed my door and sat down on the floor behind it, praying she would stop, praying harder that she wouldn’t come to my room…

Banging on my door, screaming at me to let her in….
She was sobbing.. Hes going to die, hes going to die… I burst into tears too…
She said she had to get her husband, she threw her little boy into my arms, he just looked at me with those huge brown eyes and smiled..

I was sure it was all a big mistake…

It wasn’t,…

 he couldn’t tolerate the chemo.. That was killing him, he had a treatable cancer..but his little body couldn’t deal with the treatment.. We only have Chemo at the moment, nothing else has yet come close to beating cancer..
All his treatment had to stop.

Days later.. He seemed so much better, the chemo was coming out of his system and he was up playing with his cars in the corridoors..
But, needless to say.. The cancer was spreading , slowly  killing him inside.

His mum had done research on the net and found about this drug that she wanted him to try, the doctors advised her against it… But she simply couldn’t give up..
That night, she came into my room and said “Bek, what would you do.. Would you give bailey this drug?” My answer would be “No”
But I knew she had already decided  to give it to him.. So I just said.. “you have to do what is right in your heart”
She said thank you and left..  The next morning he began the drug..

Tuesday he was playing like a normal 3 year old… Friday he was fighting for his life..
He became so poorly, so quickly..
Cruely, I avoided my friend… I wasn’t ready to except that children die, I couldn’t be there for her.. To this day im so sorry and I regret not finding the strength to be there for her.

That night I couldn’t sleep a wink, there was so many goings on in their room.. I must have drifted off.. When I was awoken by a mum, begging them not to take her baby, he had passed away, they were taking him off the ward.. I just checked that bay was asleep, ran to the bathroom, locked the door behind me and sat on the floor, my hands over my ears.. Saying over and over again.. Please go away, please go away.. I think I would have been sectioned had anyone seen me.. I just couldn’t cope with it..

I don’t know to this day if she knocked on my door, if she needed a friend.. And if I could turn back time.... But...
I never saw her again..But I think about her often.. I wish I could have been stronger.. I wish I could have been there for her..

They  say what doesn’t kill you .. Makes you stronger.. It does, I vowed to always be there for a friend in need.. And Id like to think, that if you asked any of my friends.. That would back me up on that…

The one good thing to come from all this has got to be.. The friends I have made and the lessons in life I have learnt..

Never take today for granted… Because tomorrow is promised to no one.

By the time Bailey and I had got up.. The room next door was completely cleared and the bed lay empty..
Did I tell Bailey that the first little friend he had made .. Had gone to heaven?
Of course not..
I told him he had got better and gone home..
Was that the right thing to say?…   I don’t know

Did Bailey believe me?
I don’t know…By the look on his face…im not sure…

By the afternoon.. The room was taken again.. By another family going through the same hell..  This family I must tell you about, an  amazing couple that I am lucky enough to still have in my life today..
Rich and Lynn.. And their beautiful daughter “Jennifer”… I first met Rich in the ward kitchen.. My first impression of him.. Was “what a meat head”…Well, he is a meat head.. But the nicest meat head you could ever meet !!!

I  had just sneaked out of my room to make a quick coffee, there he was, hogging the kettle (which seem to take an eternity to boil!) and used ALL the water…. Without even asking if id like a coffee!!
He  shook my hand… Saying Alright… im Rich, my wifes Lynn and shes doing my head in!!  she’s Praying? I’m mean whats that all about? Praying? I had to get out of there..  She’s praying to god, God? I tell you, when I get up to the pearly gone knee cap the ***** (too rude)!!
Mouth opened… for a split second… before bursting into laughter..  My god, I laughed,  something I hadn’t done in a very long time..
This would be the start of a truly wonderful relationship.

I had been in that place 6 weeks now…
Bailey would be ok one day then terribley ill the next… It seemed to go  on and on like that., mind you.. I seem to have this ability to “fit in”  so it was like home to me very quickly.. Everyone new me as “Bek” Baileys mum! Always smiling.. Funny, as I was dying inside!

One lady even stopped me once and asked me what I had to smile to about…?
Well, not a bloody lot to be honest, I missed my husband, I missed my son.. The son I spent 24/7 with was dying in front of my eyes and all I could do was watch.. I was living a nightmare.. And on the rare occasion that I slept.. My dreams were replaced with nightmares.
I didn’t say that of course.. I don’t recall what I said.. But I remember the reason for my smile…
It was Bailey.. Id cried and cried for days/weeks on end.. hadn’t looked in the mirror hadn’t put lipstick near my lips (I always wear lipstick or cream on them)
Bailey said one day… “Mummy why arnt you lips pink anymore and why don’t they smile?”
From then on.. I always wore my pink vasiline and a smile.. Just for my son..
How ever hard it got, I would save my tears for the bathroom.. When bay was asleep.

No matter how hard you try to keep things from children, they have this un-nerving ability to read your mind and seem to know when things arnt ok..despite the fact that you tell them that they are.

Bailey was only 4, ive never spoken to him about cancer, about dying or heaven..
We had just finished a postman pat story and he looked at me and said “mummy, will there be toys in heaven or will I need to take my own” That would be the first time and only time that I cried in front of him..

I didn’t answer him straight him away, I went to the bathroom.. Sorted myself out, came back and said…

Oh, im not sure Bay.. Im sure heaven is full of toys, but lets not think about that now as im sure we wont be going there for a long long time, To which he replied “mummy, sometimes children do go to heaven”

 Swallowing another lump as I say, right Bay, what shall we watch.. Pingu (for the millionth) time or postman pat?

Pingu DVD goes in…

I found it once again impossible to sleep that night, trying to work out how on earth my son knew that children died and went to heaven.. Did he know something I didn’t or was he aware of what had happened to his little friend and I had made a really crap job in trying to cover it up?

Bailey weighing less than 20lb
Age 5 xxx


  1. I'm in tears, this is a truly heart renching account. You are amazing to have written this. I myself have been in the same isolation ward in GOSH with my son, my heart, prayers and love goes out to you all. Bailey is a star and a little fighter...we will all fight for him and you too x