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 

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