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"
Thursday 1 December 2011
Tuesday 22 November 2011
Miracles happen to those that believe in them...
Surely after all this we must be through the worst if it.. That would be wishful thinking.. Bailey had the hardest fight of all.. Surviving 'High dose chemo' this is where I have to hold my hands up and say.. 'I really can't do this anymore'
Our consultant came in, again with all the paper work, all the risks..
What's the actual point I thought.. Yes, it may well kill him.. Alternatively we can say no and he'll die anyway..
Most of High dose would be done in isolation .. Two air Iocked doors, aprons, masks.. I would do most of Baileys Obs and meds .. The nurses would give me instructions via a phone on the wall outside the room..
This would be the worst time for Bailey and the worst time for me.. That room would drive me to the point of insanity .. I remember joking with the doctors on the rounds once.. 'I'm wondering it those curtain rails are strong enough for me to hang myself on' .... within 20 minutes two guys wearing white coats came to asses my mental state of mind!!!
... Little did I know that a dad did take his own life shortly after leaving his little girl in the hospitals mortuary.. That's another bizarre thing.. A children's hospital with its own mortuary.. There's something very wrong about that..
Anyway after insisting that It was just my sense of humour(a little warped maybe) they finally left in me in peace or to continue banging my head against the wall!!
We were half way through, we were doing everything by the day or by the hour, that's just how life becomes.. Bailey was now at the time of treatment where he was at risk of getting VOD (Veno occlusive disease) its a disease of the liver.. That has up until now been FATAL if diagnosed before day 18 of treatment...
Its my weekend at home with Gav and morgan, Chris comes in to take over ... Kissing Bailey on his boney little cheek, hes too poorly to even notice.. Still, i manage not to cry until im outside his room... Then i cry all the way home.. I passed caring what people were thinking while they stared at me on the train... Always Making sure that my eyes are dry and that im wearing my smile for my other baby boy as I walked through the door ...
My fear was that i was going to lose one child and would not be known by my other... My fears were almost confirmed by both in one weekend..
You know when a 'mum' just has that thing when her baby can be crying in someones arms, they can change position, but baby doesn't stop crying.. Then mum puts her magic arms out.. Takes baby and baby stops instantly..
Well, Morgan was crying, I cuddled him, close to my chest, put him over my shoulder .. He keeps crying.. Gav puts his arms out and and I pass Morgan over.. He stops crying in that instant with Gavs touch... My thoughts then as the tears fell out of my eyes were ... 'ive lost that bond, the bond mother and child are gifted with... that bond that should be unbreakable.. Had broken...
Yet seeing the bond that Morgan and Gav had was special and somehow made me feel less guilty about spending so more time with Bailey..
It was around 8pm.. Morgan had just gone to sleep and the phone rang.. It was Chris .... "you might have to come in, Bays got VOD.." IT'S ONLY DAY 11
Plucking morgan from his peaceful sleep.. Loading up the car, dumping him off at nanny and grandad again.. Gav and I rushed to the hospital... Bay looked so poorly.. There was nothing that could be done.. His liver and his tiny body will just have to fight.. We would just have to wait.. And hope... And pray...
Gav and Chris had to leave and I stayed the night...
This will be the one time I did pray properly.. On me knees, hands together..
I prayed that god would take him.. I Prayed that he would just make him die ... I couldn't stand it anymore.. Its just one thing after another.. He's in so much pain, his voice has almost disappeared and was replaced by this high pitched whimper.. Even when he cried he barley made a sound.. He would blow bubbles of blood when he opened his mouth.. from the ulcers that coated the inside of his body..
No one should ever have to suffer this way... Least of all a child...
In came the Doctors.. They explained just how sick he was and that the next 24 hours were critical, a child in their care hadn't survived VOD before day 18.. Reminding me that was Bay was only on day 11...
Would you like us to inform family members for you? "No thank you" Would you like us to call the priest for you? Hmmmmm let me think.. "No, No.. I don't want any god person to step within several miles of me.. This is in the interest of his own safety" (it's true.. I do have a temper.. And someone's gona get it)
Bay was on constant care for the next few days.. I hadn't slept at all.. Chris came to take over for the next few nights.. I didn't want to leave him, but this was making me ill.. Bailey hadn't eaten in weeks, he was being kept alive on something called TPN..
Miracles happen to those that believe in them...
Bailey was sitting up eating grapes and was over the worst .. Bailey had survived VOD on day 11..
Now setting new possibilities for other children... VOD can be survived now.. From day 11 not day 18
xxx
Our consultant came in, again with all the paper work, all the risks..
What's the actual point I thought.. Yes, it may well kill him.. Alternatively we can say no and he'll die anyway..
Most of High dose would be done in isolation .. Two air Iocked doors, aprons, masks.. I would do most of Baileys Obs and meds .. The nurses would give me instructions via a phone on the wall outside the room..
This would be the worst time for Bailey and the worst time for me.. That room would drive me to the point of insanity .. I remember joking with the doctors on the rounds once.. 'I'm wondering it those curtain rails are strong enough for me to hang myself on' .... within 20 minutes two guys wearing white coats came to asses my mental state of mind!!!
... Little did I know that a dad did take his own life shortly after leaving his little girl in the hospitals mortuary.. That's another bizarre thing.. A children's hospital with its own mortuary.. There's something very wrong about that..
Anyway after insisting that It was just my sense of humour(a little warped maybe) they finally left in me in peace or to continue banging my head against the wall!!
We were half way through, we were doing everything by the day or by the hour, that's just how life becomes.. Bailey was now at the time of treatment where he was at risk of getting VOD (Veno occlusive disease) its a disease of the liver.. That has up until now been FATAL if diagnosed before day 18 of treatment...
Its my weekend at home with Gav and morgan, Chris comes in to take over ... Kissing Bailey on his boney little cheek, hes too poorly to even notice.. Still, i manage not to cry until im outside his room... Then i cry all the way home.. I passed caring what people were thinking while they stared at me on the train... Always Making sure that my eyes are dry and that im wearing my smile for my other baby boy as I walked through the door ...
My fear was that i was going to lose one child and would not be known by my other... My fears were almost confirmed by both in one weekend..
You know when a 'mum' just has that thing when her baby can be crying in someones arms, they can change position, but baby doesn't stop crying.. Then mum puts her magic arms out.. Takes baby and baby stops instantly..
Well, Morgan was crying, I cuddled him, close to my chest, put him over my shoulder .. He keeps crying.. Gav puts his arms out and and I pass Morgan over.. He stops crying in that instant with Gavs touch... My thoughts then as the tears fell out of my eyes were ... 'ive lost that bond, the bond mother and child are gifted with... that bond that should be unbreakable.. Had broken...
Yet seeing the bond that Morgan and Gav had was special and somehow made me feel less guilty about spending so more time with Bailey..
It was around 8pm.. Morgan had just gone to sleep and the phone rang.. It was Chris .... "you might have to come in, Bays got VOD.." IT'S ONLY DAY 11
Plucking morgan from his peaceful sleep.. Loading up the car, dumping him off at nanny and grandad again.. Gav and I rushed to the hospital... Bay looked so poorly.. There was nothing that could be done.. His liver and his tiny body will just have to fight.. We would just have to wait.. And hope... And pray...
Gav and Chris had to leave and I stayed the night...
This will be the one time I did pray properly.. On me knees, hands together..
I prayed that god would take him.. I Prayed that he would just make him die ... I couldn't stand it anymore.. Its just one thing after another.. He's in so much pain, his voice has almost disappeared and was replaced by this high pitched whimper.. Even when he cried he barley made a sound.. He would blow bubbles of blood when he opened his mouth.. from the ulcers that coated the inside of his body..
No one should ever have to suffer this way... Least of all a child...
In came the Doctors.. They explained just how sick he was and that the next 24 hours were critical, a child in their care hadn't survived VOD before day 18.. Reminding me that was Bay was only on day 11...
Would you like us to inform family members for you? "No thank you" Would you like us to call the priest for you? Hmmmmm let me think.. "No, No.. I don't want any god person to step within several miles of me.. This is in the interest of his own safety" (it's true.. I do have a temper.. And someone's gona get it)
Bay was on constant care for the next few days.. I hadn't slept at all.. Chris came to take over for the next few nights.. I didn't want to leave him, but this was making me ill.. Bailey hadn't eaten in weeks, he was being kept alive on something called TPN..
Miracles happen to those that believe in them...
Bailey was sitting up eating grapes and was over the worst .. Bailey had survived VOD on day 11..
Now setting new possibilities for other children... VOD can be survived now.. From day 11 not day 18
xxx
Thursday 17 November 2011
Those lost hours xxx
It takes a while to except that from now on you can't plan, you can't look forward to that day out tomorrow.. Because on this journey it doesn't happen...
Operation day...
The door opened, Bailey gave up looking up, the visitor was never for him, it was never a school friend or a friendly face with a box of chocolates... It was a nurse with a needle or nasty medicine that made him sick...or a doctor that would make his mummy hide in the toilet and come out 10 minutes later with some lie about her eyes stinging..
On this occasion it was the surgeon who was going to try and remove Baileys tumour...
He was very tall, very quietly spoken, very calm and I trusted him...
He handed over some paper work and said "with all operations there are risks, especially this one, Baileys tumour is close to his heart, several main veins and most of his vital organs, I must try to remove all of the tumour to be successful.. The risk is fatal bleeding" please sign here....
Again... I couldn't sign.
He shook chris's hand and took mine and held it tight, I was shaking like a leaf.. He said "I have children, I will do all I can"
Nil by mouth from midnight Bailey will go down to theatre at 9am..
Nil by mouth was easy.. He never ate anyway... Oh, except today..
It's 5am and Bailey points to a Cadbury flake, t
Baring in mind that flake had sat there for a week!!
Trying to take his mind off it was failing bitterly ... For weeks I'd been begging him to eat ... Now he was begging me for just one bite ...
My thoughts were.. What if he dies.. What if he never comes back from the operating theatre.. And I denied him a tiny piece of chocolate ...
Calling the nurse .. I asked if I could just give him one tiny bit.. "absolutely not" she replied...
This was killing me... He was so poorly, so weak, so thin.. The chances of him coming back to me were less likely than the chances of him having a problem from eating it xxx
As I wiped the tears from his cheeks I popped a tiny bit of flake into his mouth.. Knowing the risks.. But feeling comfort in the fact that he had what he seemed to want more than anything...
15 mins later... They came for him.. I toyed with telling them what I'd done.. But I stayed quiet...
I walked along side his trolley with his dad... Watched him close his eyes for I what could have been the last time... I felt sick, I went white.. I remember someone asking me if I'd like to sit down.. I just remember running towards the main entrance... To where Gav was waiting for me...
11 hours past.. What the hell did we do, where did we go... I have absolutely no idea... I just remember clutching my mobile phone.. Waiting for a call with news of my baby....
Bailey was in recovery...
A scar the full width of his tummy and a small trace of chocolate on the side his mouth ;)
And the desperate wait for the professor to tell us if he managed to get it all out...
Bailey was back in our room an hour when the door opened and that tall man walked in...
Myself, Gav and Chris just looked at him.. He smiled and said, "I believe I got it, all of it" Chris and Gav both stood up and shook his hand..
I couldn't tell you what he looked like.. But I could give you every details of his shoes... Because I dreamed of kissing them..
He said "right, I'm going home, I'm late for my dinner"
How normal for one of life's Heros.
Bailey slept for another few hours.. I couldn't wait for him to open his eyes and look at me , I couldn't wait to look into his.. Knowing that the primary tumour that had spread its self around my baby's body was gone... I couldn't wait to give him the rest of his Cadbury flake.
Bay woke up in a bit of pain, not as much as I thought... I smiled and unwrapped the flake and placed into his hands like it was a long lost priceless object... Bailey threw it on the floor and said he didn't want to eat anything!!!
Operation day...
The door opened, Bailey gave up looking up, the visitor was never for him, it was never a school friend or a friendly face with a box of chocolates... It was a nurse with a needle or nasty medicine that made him sick...or a doctor that would make his mummy hide in the toilet and come out 10 minutes later with some lie about her eyes stinging..
On this occasion it was the surgeon who was going to try and remove Baileys tumour...
He was very tall, very quietly spoken, very calm and I trusted him...
He handed over some paper work and said "with all operations there are risks, especially this one, Baileys tumour is close to his heart, several main veins and most of his vital organs, I must try to remove all of the tumour to be successful.. The risk is fatal bleeding" please sign here....
Again... I couldn't sign.
He shook chris's hand and took mine and held it tight, I was shaking like a leaf.. He said "I have children, I will do all I can"
Nil by mouth from midnight Bailey will go down to theatre at 9am..
Nil by mouth was easy.. He never ate anyway... Oh, except today..
It's 5am and Bailey points to a Cadbury flake, t
Baring in mind that flake had sat there for a week!!
Trying to take his mind off it was failing bitterly ... For weeks I'd been begging him to eat ... Now he was begging me for just one bite ...
My thoughts were.. What if he dies.. What if he never comes back from the operating theatre.. And I denied him a tiny piece of chocolate ...
Calling the nurse .. I asked if I could just give him one tiny bit.. "absolutely not" she replied...
This was killing me... He was so poorly, so weak, so thin.. The chances of him coming back to me were less likely than the chances of him having a problem from eating it xxx
As I wiped the tears from his cheeks I popped a tiny bit of flake into his mouth.. Knowing the risks.. But feeling comfort in the fact that he had what he seemed to want more than anything...
15 mins later... They came for him.. I toyed with telling them what I'd done.. But I stayed quiet...
I walked along side his trolley with his dad... Watched him close his eyes for I what could have been the last time... I felt sick, I went white.. I remember someone asking me if I'd like to sit down.. I just remember running towards the main entrance... To where Gav was waiting for me...
11 hours past.. What the hell did we do, where did we go... I have absolutely no idea... I just remember clutching my mobile phone.. Waiting for a call with news of my baby....
Bailey was in recovery...
A scar the full width of his tummy and a small trace of chocolate on the side his mouth ;)
And the desperate wait for the professor to tell us if he managed to get it all out...
Bailey was back in our room an hour when the door opened and that tall man walked in...
Myself, Gav and Chris just looked at him.. He smiled and said, "I believe I got it, all of it" Chris and Gav both stood up and shook his hand..
I couldn't tell you what he looked like.. But I could give you every details of his shoes... Because I dreamed of kissing them..
He said "right, I'm going home, I'm late for my dinner"
How normal for one of life's Heros.
Bailey slept for another few hours.. I couldn't wait for him to open his eyes and look at me , I couldn't wait to look into his.. Knowing that the primary tumour that had spread its self around my baby's body was gone... I couldn't wait to give him the rest of his Cadbury flake.
Bay woke up in a bit of pain, not as much as I thought... I smiled and unwrapped the flake and placed into his hands like it was a long lost priceless object... Bailey threw it on the floor and said he didn't want to eat anything!!!
Tuesday 15 November 2011
During....
Baileys quite bright today.. No infections.. We may just make it to the play room :)
The play room for me replaced my social life.. and was really quite enjoyable sometimes, my colouring- in skills reached a defanite 10 out 10!!!
Today i met Laura and her dear little boy Lucas.. He looked a bit like ET.. A tiny little boy with with a tiny body and a heartbreakly huge tumour on his liver, causing his tummy to swell like a balloon.. Lucas always had the the little red light attached to his finger, checking his heart rate.. Hence the ET status!!
Lucas had a passion for "BRUM" that totally hidious car kids tv program.. He had it playing LOUD morning, noon and night.. His passion of love for it became my passion of hate!!!!
Even the tune of it now drives me insane!!!!
Laura and i became good friends inside the hospital.. On Lion ward.. (She is still a good friend to this day and a massive support to me)
We shared our thoughts and fears.. We raced each other to answer the public telephone in the hall.. It was a person on the outside word on the other end.. Not something we had the privelidge of anymore.. We even shared the odd glass of wine (Laura would sneak it in or get her friends to.. I would never do such a thing ;))
I used to watch Laura's visitors come and go, they were in the room opposite me.. I used to imagine being part of that blip of social life.. I however rarely had any!! Why? Because i shut myself off to my life as i knew it.. I was also terrified that someone might sneeze and spread a billion germs in our room.. Mad really, as ive never been one for a tidy house or cleaning!!
Days passed the children were up and down.. we were up and down..
A week would never go by without some sort of heart break for someone....
This afternoon im looking forward to going to Sids (Anyone who has spent anytime at GOSH will know Sids, Its 'The' Cafe) with Lyn, Lyn is Jeniffers mum.. The kindest and most gentle lady you could ask to meet.. I know everyone loves their children.. But Lyn had something special, a devotion you dont always see.. A patience that was a gift and love that you could feel and smell just oozing from her
. Jeniffer had a brain tumour.. WE spoke about our babies, again about the fear of losing them.. That was always the topic of any of us.. Thats all there was.. Life on the outside seemed to have stopped exsisting...
This was all there was, you couldnt even see a light at the end of the tunnel, there was no tunnel.. it was an up hill dark exsistance with door after door after door to get through..
Some days you would knock and sit and and wait for someone to open it.. Other days you would smash right through it and sometimes you would just be on your knees, crying from the pit of your soul, praying that someone would hear you.. Longing for someone to pick you up and push the door with you, if not for you.. praying that someone would at least just turn a light.
Lyn would pray, she is a religious person.. That day we both had apple pie and she said to me.. "Bek, do you pray?" I thought for a moment, i thought hmmmmm, do i lie and say 'Oh, yes every night and grace before every meal' Or do i be honest and say "No, not really.. Every prayer ive ever said hasnt been answered, so i guess i gave up praying when i was about 15.. I call him a few names from time to time though!! As im known for my often brutal honesty, i said.. "To be honest Lyn, NO.. I dont.. i have a few choice words for him.. but im saving those until we are face to face ;)"
Lyn just smiled.. she didnt judge me or push me into doing so.. She just said.. Bek, I never pray that jeniffer. will get better, I never ask why, i just pray that she wont suffer...
That amazes me each and everyday because when i do talk to him.. I say WHY us, WHY me, WHY my son.. YOU better make him well..
Kind of making Lyn even more special...
Yet.. IF you was to ask me.. Did jeniffer suffer? Id say YES, YES she bloody did.. She lost her fight at just 3 years old..
The last time i saw Jeniffer we were at the middlesex hospital in London.. We were both up there having Radiotheraphy.. Rich (Jens dad) rang me and said "Bek, we are at the enterance.. we are finished with treatment, they cant do anymore.. would you like to come and say good bye to little legs (His nick name for jen) And Lyn said dont you dare cry, not in front of jeniffer"
Ok, hang on.. Very dear friends are taking their little girl home to DIE, a little girl that ive become very fond of, two people that have shared their love and their fears with me, two people that are about to take the path of no return... and im suposed to just pop down, say goodbye, NOT cry, watch them leave and then go back to my son..knowing that the path they were taking could be one of my cross roads..
I did... I hugged Rich and Lyn and a gave jennifer a big kiss and said "now you be a good girl for mummy and daddy" pretty good considering it felt like my throat had been cut.. jeniffer smiled as she rested her tiny head head on her daddy's shoulder and as if knowing i was hiding something she never took her beautiful eyes off me xxx
That phone call came...
Rich called with the news id been dreading...
My heart broke for him... Theres something about a grown man crying that will never fail to pull like lead weights on the strings of my heart..
Every night at about the same time for a week or so.. my house phone would ring..
Dont answer it, Gav would say.. (He hated seeing me so upset)
And despite the fact that answering it would make me ill.. make my heart feel like it was being dragged out of my mouth.. I had to, i made that promise to be there for a friend.. To be strong enough to listen to their pain, never forgetting the first friend i made at GOSH.. Shutting myself in the bathroom unabe to lend her my ears.. To this day im angry that her let her so down badly.. And it was of that day.. That no matter how hard it was for me to hear.. It was nothing to what they were feeling.. and i would always answer that call...
So the phone would ring.. i would position myself facing the window with a mountain of tissues on my lap..
"Hi Bek.. Rich has gone to read to Jeniffer, have you got time for a chat?
"Of course Lyn" i would always say.
How are you baring up?
Then her heart would open up to everything she missed about her beautiful little girl, everything she felt and everything she had gone through.. All the fears we spoke of over apple pie were now a reality, a heart felt pain from one mum to another..
"Im leaving Jeniffers little pink shoes in the porch, just where she left them, just where she took them off.....
Sometimes lyn would say "Bek, are you still there.. I could only nod down the phone because lyn and rich's story would take me to the point im crying so hard i couldnt breathe.. Let alone speak.
Jen was in the chappel of rest and her daddy would go to her bedroom, fill a bag with her favourite books and go every night to her tiny lifeless body and read her story after story.. You call me brave.. That man has balls of steel...
Jens fueral fell on or right next to Baileys Birthday.. We didnt go.
Rich Called just after and assured me that they understood..
He also told me how he carried his 3 year old daughters pink coffin by himself to the front of the church..
Rich is a guy i admire, who is still in my life today and who i consider to be a very good friend (Despite his a potty mouth)!!!
Rich and Lyn.. Would head for 'Jennifers beach' A place jennifer loved, a place they made some very precious memories..
I do believe the hardest call i ever took from those beautiful people was the one where Rich simply said "Hello Bek.. Lyn and i are on 'Jennifers beach' we've brought jennifers pink bucket and spade and we've made a sand castle with sand and her ashes.. We are waiting for the tide to come in.. Jennifer will be able to collect shells here forever... And Lyn and i wanted to share this moment with you"
Rich and Lyn spend every moment they can on that beach. Lyn told me that she sprinkles glitter on the sand too.. I would often send parcels of glitter.. Glitter always reminds me of Jennifer... God love them xxx
The beautiful Jennifer ... With eyes that would melt you heart.
Those that had the pleasure of looking into Jennifers eyes will know that they were so deep and knew more than 3 year old should xxx
Sleep tight Angel xxx
The play room for me replaced my social life.. and was really quite enjoyable sometimes, my colouring- in skills reached a defanite 10 out 10!!!
Today i met Laura and her dear little boy Lucas.. He looked a bit like ET.. A tiny little boy with with a tiny body and a heartbreakly huge tumour on his liver, causing his tummy to swell like a balloon.. Lucas always had the the little red light attached to his finger, checking his heart rate.. Hence the ET status!!
Lucas had a passion for "BRUM" that totally hidious car kids tv program.. He had it playing LOUD morning, noon and night.. His passion of love for it became my passion of hate!!!!
Even the tune of it now drives me insane!!!!
Laura and i became good friends inside the hospital.. On Lion ward.. (She is still a good friend to this day and a massive support to me)
We shared our thoughts and fears.. We raced each other to answer the public telephone in the hall.. It was a person on the outside word on the other end.. Not something we had the privelidge of anymore.. We even shared the odd glass of wine (Laura would sneak it in or get her friends to.. I would never do such a thing ;))
I used to watch Laura's visitors come and go, they were in the room opposite me.. I used to imagine being part of that blip of social life.. I however rarely had any!! Why? Because i shut myself off to my life as i knew it.. I was also terrified that someone might sneeze and spread a billion germs in our room.. Mad really, as ive never been one for a tidy house or cleaning!!
Days passed the children were up and down.. we were up and down..
A week would never go by without some sort of heart break for someone....
This afternoon im looking forward to going to Sids (Anyone who has spent anytime at GOSH will know Sids, Its 'The' Cafe) with Lyn, Lyn is Jeniffers mum.. The kindest and most gentle lady you could ask to meet.. I know everyone loves their children.. But Lyn had something special, a devotion you dont always see.. A patience that was a gift and love that you could feel and smell just oozing from her
. Jeniffer had a brain tumour.. WE spoke about our babies, again about the fear of losing them.. That was always the topic of any of us.. Thats all there was.. Life on the outside seemed to have stopped exsisting...
This was all there was, you couldnt even see a light at the end of the tunnel, there was no tunnel.. it was an up hill dark exsistance with door after door after door to get through..
Some days you would knock and sit and and wait for someone to open it.. Other days you would smash right through it and sometimes you would just be on your knees, crying from the pit of your soul, praying that someone would hear you.. Longing for someone to pick you up and push the door with you, if not for you.. praying that someone would at least just turn a light.
Lyn would pray, she is a religious person.. That day we both had apple pie and she said to me.. "Bek, do you pray?" I thought for a moment, i thought hmmmmm, do i lie and say 'Oh, yes every night and grace before every meal' Or do i be honest and say "No, not really.. Every prayer ive ever said hasnt been answered, so i guess i gave up praying when i was about 15.. I call him a few names from time to time though!! As im known for my often brutal honesty, i said.. "To be honest Lyn, NO.. I dont.. i have a few choice words for him.. but im saving those until we are face to face ;)"
Lyn just smiled.. she didnt judge me or push me into doing so.. She just said.. Bek, I never pray that jeniffer. will get better, I never ask why, i just pray that she wont suffer...
That amazes me each and everyday because when i do talk to him.. I say WHY us, WHY me, WHY my son.. YOU better make him well..
Kind of making Lyn even more special...
Yet.. IF you was to ask me.. Did jeniffer suffer? Id say YES, YES she bloody did.. She lost her fight at just 3 years old..
The last time i saw Jeniffer we were at the middlesex hospital in London.. We were both up there having Radiotheraphy.. Rich (Jens dad) rang me and said "Bek, we are at the enterance.. we are finished with treatment, they cant do anymore.. would you like to come and say good bye to little legs (His nick name for jen) And Lyn said dont you dare cry, not in front of jeniffer"
Ok, hang on.. Very dear friends are taking their little girl home to DIE, a little girl that ive become very fond of, two people that have shared their love and their fears with me, two people that are about to take the path of no return... and im suposed to just pop down, say goodbye, NOT cry, watch them leave and then go back to my son..knowing that the path they were taking could be one of my cross roads..
I did... I hugged Rich and Lyn and a gave jennifer a big kiss and said "now you be a good girl for mummy and daddy" pretty good considering it felt like my throat had been cut.. jeniffer smiled as she rested her tiny head head on her daddy's shoulder and as if knowing i was hiding something she never took her beautiful eyes off me xxx
That phone call came...
Rich called with the news id been dreading...
My heart broke for him... Theres something about a grown man crying that will never fail to pull like lead weights on the strings of my heart..
Every night at about the same time for a week or so.. my house phone would ring..
Dont answer it, Gav would say.. (He hated seeing me so upset)
And despite the fact that answering it would make me ill.. make my heart feel like it was being dragged out of my mouth.. I had to, i made that promise to be there for a friend.. To be strong enough to listen to their pain, never forgetting the first friend i made at GOSH.. Shutting myself in the bathroom unabe to lend her my ears.. To this day im angry that her let her so down badly.. And it was of that day.. That no matter how hard it was for me to hear.. It was nothing to what they were feeling.. and i would always answer that call...
So the phone would ring.. i would position myself facing the window with a mountain of tissues on my lap..
"Hi Bek.. Rich has gone to read to Jeniffer, have you got time for a chat?
"Of course Lyn" i would always say.
How are you baring up?
Then her heart would open up to everything she missed about her beautiful little girl, everything she felt and everything she had gone through.. All the fears we spoke of over apple pie were now a reality, a heart felt pain from one mum to another..
"Im leaving Jeniffers little pink shoes in the porch, just where she left them, just where she took them off.....
Sometimes lyn would say "Bek, are you still there.. I could only nod down the phone because lyn and rich's story would take me to the point im crying so hard i couldnt breathe.. Let alone speak.
Jen was in the chappel of rest and her daddy would go to her bedroom, fill a bag with her favourite books and go every night to her tiny lifeless body and read her story after story.. You call me brave.. That man has balls of steel...
Jens fueral fell on or right next to Baileys Birthday.. We didnt go.
Rich Called just after and assured me that they understood..
He also told me how he carried his 3 year old daughters pink coffin by himself to the front of the church..
Rich is a guy i admire, who is still in my life today and who i consider to be a very good friend (Despite his a potty mouth)!!!
Rich and Lyn.. Would head for 'Jennifers beach' A place jennifer loved, a place they made some very precious memories..
I do believe the hardest call i ever took from those beautiful people was the one where Rich simply said "Hello Bek.. Lyn and i are on 'Jennifers beach' we've brought jennifers pink bucket and spade and we've made a sand castle with sand and her ashes.. We are waiting for the tide to come in.. Jennifer will be able to collect shells here forever... And Lyn and i wanted to share this moment with you"
Rich and Lyn spend every moment they can on that beach. Lyn told me that she sprinkles glitter on the sand too.. I would often send parcels of glitter.. Glitter always reminds me of Jennifer... God love them xxx
Those that had the pleasure of looking into Jennifers eyes will know that they were so deep and knew more than 3 year old should xxx
Sleep tight Angel xxx
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..
Results
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 gates..im 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
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..
Results
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 gates..im 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?
Age 5 xxx
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