Bear with a sore Head

Bear With a Sore Head

Joshua over the next four days is grumpy... We are not surprised and it's a very low time for us.

He has regular morphine to help with his pain, but he rejects anything orally like pamol and brufen. Our Nursing staff are outstanding, they put up with a barrage of screaming, kicking, hitting and crying from Joshua. He is agititated, even I have trouble understanding him and sometimes he'll repeat the same thing over and over and over and we just can't get it. It might just be 'it's raining outside' and because we cant understand he just winds himself up higher and higher, till he's screaming and screaming.

One day he becomes fixated on the helicopter, I tell him that its bringing sick kids to the Hospital. He then repeatedly tells us he wants to go on it. You cant reason with him and it's awful. But, he's talking, he has no facial palsy, his left eye still squints to see things, he's very weak on his left side, but he's here and he's Joshua.

On the Thursday, he goes for a repeat MRI (4th GA) There is just a millimeter of tumour left that they couldn't get to. I hug Andrew Law, if it's under the 1/2 a cm mark, it means he has an 80% chance of cure if the histology of the tumour comes back showing medulloblastoma. it's a really up day for us.

Unfortunately on Friday we get black news. The tumor has 'anaplasic' cells as well. Only 10-15% of medulloblastomas have anaplasic cells. So not only have we won lotto, we also have the bonus ball as well. It lessens his chances of complete cure to 60-70%. This is a terrible blow, I spend most of the day crying. We are putting him through this, ourselves through this, it's so hard. The numbers are hard for me.. I'm a medical person, I take my hope from statistics.

It was one of the hardest points for me, black friday (and no it wasn't the 13th!) I sat in the lounge and bawled my eyes out. I just wanted to pick him up and take him home, which he kept asking for anyway. Grandad was back, he would help me take Joshua to the toilet and I hated watching dad trying to lighten Joshua up, when he was so low. It's hard watching your parents greive.

Mum has been the stalwart, she's been the mainstay of us all, taking care of Georgia, Georgia has just switched her affections to Nana. I'm so pleased that our kids have a superclose Nana and Grandad, I always tell people that Mum would 'hike up the Himalaya''s with one leg in plaster for her grandchildren. I also tell people she nearly has joint custody, which i'm so pleased about right now, because it feels like we have 3 parents here.

Friday was horrible, I felt like I had lost my courage to fight this thing, I just wanted to go home. When your child is sick, it is happening to you. You have the strings between yourself and your child, the strings that tie you. You also are at constant conflict, because people keep hurting your baby, which they need too. But as a mother, your the lioness, your basic instinct is to protect your baby and for me as a medical professional, I really struggle. Our Nurses are wonderful with me, I tell them i'm clamping the drain when I move Joshua, because if it goes to high, it won't drain the CSF, if it goes too low, it will drain too much. But i'm constantly questioning, evaluting what's going on, worrying. I argue with Amy, one of our wonderful nurses at 6am one morning because she doesn't want to take a blood sample from the Central line, she wants to prick him for accuracy. I feel for her, having to defend her practice with the 'ICU mother'. But she's an awesome Nurse.

I read somewhere the following day that 'courage is not the absense of fear, but the ability to master fear' That made sense to me, I just have to take control of the terror.

On Friday we also discover a 'burn' on Joshuas back, no one knows where it's come from, Emily another of our beautiful Nurses, dresses it with comfeel, which sticks fast. Two days later Joshua starts running fevers, Elenor the CNL wants the dressing off, but it's pulling off the top layer of his skin.

The weekend is full of visitors. Joshua is tired and grumpy. Clare and Richard come up for the whole weekend with the kids. I really struggle with the idea of leaving the hospital for a while, I don't do very well away from him, but also feel guilty because I barely see Daniel and Georgia. Particularly Georgia, I see her least. I sleep at the Hospital most of the time, Mike releives me but I hate to be away, I just don't sleep, I lie awake and worry.

On Monday we meet one of our oncologists, we are taken through the chemotherapy/radiotherapy process. If it's going to come back it is likely to be in the first three years and after five years we are home and hosed. They go through the processes, the side effects, the damage it will cause. It's another conversation that sends me down hill, but not as far this time. Friday was the worst.

On Tuesday we have a great day, Joshua's head drain (EVD) comes out. Its a bit traumatic, he has to have a stitch without local. He's been running temps for the last 48 hrs or so, so has to have blood cultures. But after that we are moved out of HDU into a room, we now have TV! there is a parent bed, so no more hard chairs... and we have a door which we can close, so no more crying babies keeping us awake. Mike goes home for the first time to Rotorua, he will be back on Friday. I enjoy the space, Georgie can hang out without having to chase her over the whole department

On Friday I meet the radiation oncologist... for the first time I feel better coming out of a meeting with a Dr, than I did coming in. He tells me not to focus on the anaplasia too much. Joshua is now spending more time with the physios, his walking is starting to improve, although he cant walk independently. Today we are visited by Supriya, a beautiful young lady from the Child Cancer foundation. Joshua gets his beads of courage.. he already has a nearly full string.

Friday night Joshua is running a hugely high fever.. Mike does the overnight and calls me at 0530, because he is just thrashing around and vommitting. It is 1pm and we are going to CT to make sure there is no infection.

Saturday 10/11

What a terrible day. How much more are we supposed to take? How much more does Joshua have to take? I can understand how parents of seriously ill children kidnap them from the Hospital, all day I just wanted to pick him up and run.

So it started at 5.30 am when Mike woke me, Joshua was running a hugely high fever and vommitting. They were trying to do blood cultures (yet again) and Joshua was screaming blue murder. I came up and tasked Mike for not dealing with it, which I felt bad about later. I wasn't expecting that Joshua was really sick, the day before we'd been hooping around the Hospital in a wheelchair.

When I arrived, there was a lot of confused staff, The nurse hadn't had him before, they wanted to do cultures and had forced brufen into him which he just threw up. Luckily the Dr, was someone we had met before. I had to hold joshua down for another blood test.

In between vommitting he was just flacid with his high temp. He was over 40 c for most of the day. What happens with a febrile Child is this... everytime they run a temp, they test the urine, they take blood cultures and in Joshuas case they test the Cerebral spinal fluid to make sure they don't have meningitis. So in Joshuas case, because he no longer has the drain in, they want to do a lumbar puncture.

Firstly we've done cultures and urine which are all clear. I by 10am am running a temperature and feeling nauseated myself, so I'm sure Joshua's got the gastro bug, that Georgia and Mum had on tuesday, even though they were both isolated as soon as we knew.

We do the CT scan, which this time Joshua is terrified of... I can only keep him calm by telling him that if he doesn't lie still they are going to give him a prickle. It's horrible, I hate it. The CT is fine, we return to the ward and I am feeling pretty rubbishy, so I sleep on my bed, Joshua is asleep again as well.

At 4pm Amy wakes me to tell me hamish is going to do a lumbar puncture and put an IV back in.She says he is going to do it on the ward without an anaesthetic. I start to cry, I've had enough. If he was an animal we wouldn't be doing this. Hamish comes in, I can't pursuade him not to do it. I lose the plot at this point, I have to leave. I'm a coward I know, but I just can't watch him go through it. Mike comes up and I go down to the house to bed.

He phones at 7 to say it's done. They had to take him to Theatre in the end and sedate him partially. Hopefully he doesn't remember to much.

I go up to wait for the results, I'm really worried about this bug in his weakened immune system. The results are fine. They put him on IV fluids and IV pamol so he can sleep all night uninterupted. I go home and sleep until Daniel projectile pukes through our bed at 7am. So Daniel is now confined the our room with the bug.

So it's Sunday morning now and I've just been talking to a paediatrician that came to see him and she said that if we are in Hospital, the nosocomial infections (bugs around the Hospital) Are virtually impossible to avoid. All it would have taken was Georgie bringing her blankie. It even could have already been in our room at 'Grafton'. Thats the downside of keeping families together I guess.

This morning Joshua is eating and drinking and fever free.

Thank God for that

Monday 12th November

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Today was a great day, Joshua was allowed to come down to our 'Auckland house' for the first time. We went to the supermarket together, he's still got a long way to go, but getting him out of the hospital scene was so good, he is so much better. He tries to help himself as much as he can, when we are there, in comparison with the hospital where he just wants to hide under the blankets. It was a good day.

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Bridget Pirie | Reply 24.03.2013 14.59

Whew. What harrowing reading. Pete had an LP once, without sedation as it was an urgent one. It's the only time that I haven't stayed with him for a procedure.

Debbie and Dean Berry | Reply 13.11.2012 21.38

Our thoughts are with you all, keep strong and positive. Deb & Dean from BK's.

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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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