Surviving the Weekend

Shock

It's the fear that paralyses you and the pain, when your child is in pain, that sends you spiralling into hell.

Joshua is frightened, it's so hard to deal with. Everytime someone comes near him, he knows it means something unpleasant. He's on Steroids, he's starving hungry! on the first day in SS (Starship) he has to fast for the MRI. It's not until 2.30. He hasnt eaten since the night before. The pressure in his head and the fear are making him a little unreasonable.

We arrive in MRI and have to wait about 30 minutes. Joshua just screams and screams and screams. He's hungry, we cant feed him, he wants to go home. I sing him the 'I love you song' as they anethetise him. He's hanging over Mikes shoulder as his eyes cloud and close. We then go to the waiting room where I sob and sob. I'm paralysed by the grief, by the fear, by the pain. Mike and I hold hands. How much worse can it get? I wonder.

Daniel and Georgia arrive in Auckland while he is still asleep after the anesthetic. Joshua hears Daniels voice, the next thing he's up and launches himself wobbly at his brother, he kisses and kisses him and Daniel is giggling. Its beautiful and the sun comes out in my soul for a while.

Gordon, my father in law and Clare my sister in law arrive. They have packed up our lives, packed up the kids lives. We have been moved into Ronald Mcdonald house. We are now a Starship family. I think about all the times i've dropped coins into the charity boxes for them. I can't beleive it's us. Things like this don't happen to us.

Patrick the neuro surgeon arrives. It's cancer, probably a medulloblastoma. I already thought it would be, although I make a point of staying away from DR Google, the one article I read said that 40% of them are.

We are placed under the care of Andrew Law. We are told he is the best, head of department and a neurological superstar. They will operate on Tuesday and get this fucker out of my babies head.

We head into the weekend, the long wait for a meeting on Monday with Mr Law. Mike and I take turns at sleeping with Joshua, there are no provisions for parents in HDU, just cold hard chairs. I have taken to lying beside him with his head on my arm, his pulse rate keeps dropping because of the increasing pressure. I don't want him to need surgery before tuesday. 

We get through Friday night. Saturday we spend most of the day on level three in the family room. Mum and Dad are here,Joshua is large as life, you wouldn't know he was sick, Kim visits for the first time, Kim and Becs, my best friends, both visit over the weekend. They keep me going.

On Saturday night I sleep with Joshua again. His heart rate has to stay above 60 when he's asleep. On Thursday and Friday night I manage to keep it up by propping him up on my shoulder, so his head is well elevated. On Saturday night all I can hear is alarms.

I'm woken at 2am, we need to go to CT, we are wheeled over to Auckland and Joshua is scanned and we return to 26a.

I lie in bed paralysed with worry, his heart rate is 56. Has been all night, i'm told this is critically low. I can't beleive that he's concious, kids compensate they tell me, till the last minute.

At 3am, Hamish, the surgeon on call arrives. We are going to Theatre, he has to have a drain put in. Basically his brain is being squished to death.

Mike has to be woken in Grafton house, quietly I'm releived, Joshua is in a deep sleep being the middle of night and barely registers being transferred to Auckland again for surgery. When he returns at 5.30 am, Mike stays and I quietly slip off to 'Grafton' and drug myself to sleep.

Mum and Dad are keeping the family going. Mum takes care of Daniel and Georgie, feeds them, baths them and entertains them. Joshua perks up whenever Daniel arrives, becomes animated and plays. Parcels are starting to arrive, so far we've been lucky with visitors, only the inner circle have been, Mum, Dad, Clare and Richard, Kim and Becs and of course Patrick. Lillian my sister inlaw doesn't come much, she finds it too hard, finds it easier to stay away. I wish I could, sometimes, when the fear becomes overwhelming.

Mal my brother comes with Noel my nephew, was proud of him. Parcels are starting to arrive as the word gets out. Texting has become my lifeline to the outside world. I feel like I have moved to an Alien planet where there is this whole other civilisation, a whole community of people with seriously unwell children. On 26a, there are not many happy stories, lots of severe epilepsy, hydrocephalus, strange disorders. One little girl of about 12 has been here for 6 months, they don't know what's wrong.

The Mums and Dads meet in the kitchen, it was here we have met many awesome people, just like us that have also been dealt a shit set of cards.

On Monday we meet with the man that holds our sons life in his hands, Andrew Law. The meeting is almost overwhelming. I hold it together by rubbing my nose really hard. For the first time I'm faced with a picture of the thing in Joshua's head, I feel ill. It's the size of a tennis ball he says. It was caused by embryonic cells, that lay dormant, firing off again. It grew fast. There are about 12 in NZ a year, and 250 in the whole of the US. It's just damn bad luck.

He tells us that it is very close to the brainstem, that Joshua may die in surgery. He says that Joshua may be mute, have facial palsy, a slur, wonky eyes and his balance be very impaired. He tells us that with Chemo and Radio, we have about an 80% chance of beating it. He also tells us that he's seen many marriages shatter under the stress of the journey and tells us to stick together and to look after our other kids.

It's hard, it feels like it's our last day with Joshua. We make movies of the boys playing so we can hear his voice. I havn't slept beside him with the drain in, we sleep on the chairs. We find out his surgery is scheduled for the afternoon, not the morning as we had hoped. I shower on Monday night at Grafton, I know I wont be back here till after the surgery. i'm constantly nauseous, I lost 5kg in the first week, through not eating. How could I, I wanted to go through everything Joshua went through. When he didn't eat, I didn't eat, when he was fasting I was fasting. It was a coping mechanism for me.

 I just want the bloody thing out.

 

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Constance Stewart | Reply 05.01.2013 19.39

please God help this family

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Latest comments

13.07 | 21:33

Hi Anne-Marie - I found out about all this following a link someone liked on FB. I think of you all often. You brightened my life xxxxxx to you all.

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04.06 | 18:38

That was and amazing story so pleased you are all doing well Kind Regards Sandra Rohrlach

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08.03 | 17:48

Well done to all. Annemarie I did send a friends request on FB for "Josh updates" a couple of days ago(Mike Wish) but no reply.
Cheers to all from WA

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25.09 | 20:01

We are staying at CCF Arrowtown, and we read about your family in the guestbook. You can read about our medullo journey at www.rorygardiner.co.nz. xox

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