Thursday, November 30, 2006

A day in the life

Less than a week to go until the next op. Tension starting to mount.

The boy had a first trip to the park since the earlier op. He felt well enough to go on the slides and swings. He excitedly told me about the trip and going to the cafe to get tea for Mummy.

Granny came to visit. But this was a mixed blessing as she is very anxious about the op. This is understandable but does tend to disturb our carefully crafted equanimity. Not sleeping very well at the moment. Hard to put fears out of the forefront of my mind at night. There seems to be a constant theme in the posts about this but it's a constant in our lives since the boy was diagnosed.

Wednesday, November 29, 2006

The Winner Takes It All

And the winner is... the boy.

We found out yesterday that the boy won the competition that he entered for the Christmas card design (see Picture This 23 November). We were so thrilled. Perhaps overly so but good news is rare round these parts.

A good excuse to re-post his picture:

Oh. And he is indeed having tantrums about auntie's trip to America. Apparently, he had quite a spectacular one yesterday morning. Tears, wailing and throwing himself on the floor. The full works. Was eventually consoled by the thought that he can give her a big hug when she's back.

Tuesday, November 28, 2006

Living in America

Hot news from the home front. Tantrums ahoy.

Auntie has gone to spend a week in America. The wife has tried to explain that she is taking big panda and chi chi panda to visit chi chi's parents. But she will be back next week. The boy seemed to understand that auntie is going away but is currently in denial. When the awful reality of no auntie or pandas sinks home there are going to be tantrums a plenty.

Here's the boy's view of the pandas on their visit to the hospital (chi chi is in the foreground).

Sunday, November 26, 2006

Must I Paint You A Picture

Auntie gave us some of the photos from the hospital. Here is my view of the boy; and (when he was well enough to take photos) his view of me.

Saturday Boy

Being Saturday, it was the wife's turn for the lie in and mine to deal with the boy. A lovely, dull day of normality.

The boy had a good sleep. Not always the case. Makes a big difference to how difficult the day is going to be. After a squabble, he used the potty and was proud of the results. Watched a bit of TV whilst so doing. His balance is still poor. On the way back from cleaning the potty, his head bounnced off the door frame to his room as he staggered after losing his balance. Lots of tears but otherwise ok.

Took our time going downstairs since there was nothing we were pressed to do. He made me do the washing up before I could have breakfast. Of course, he made me coffee.

Coffee was just brewing when we received a visit from Z and his mother. They didn't stay long but it was an interesting visit. The first time the boy has been with another child of his own age since the op. Indeed the first time for several weeks. He was very wary of Z, especially his
quickness, mobility and greater physical strength. Played with me in preference for a while. They did play together later but with the boy always appealing to me to intervene if he couldn't get something from Z or had it taken from him.

After they left we went to see big panda and chi chi at auntie's house. He still regards these visits as such a treat. He excitedly toddled off down the road holding on to me with one hand and little panda with the other. Had a lovely time there. Made a cup of tea for the pandas to share (his new sign). Then he sat with auntie on the big chair reading a book. He is going to be difficult when she is away next week.

Came home via the shops. The boy happy to be home as he had been telling me he wanted to give Mummy a hug and make her a cup of tea.

A slow afternoon as the boy and I were tired from the week in hospital. I was really looking forward to my lie in by the time he went to bed. A pretty dull day by most people's standards. But pretty idylic by mine.

Saturday, November 25, 2006

Between the wars

Second day back. But first day of normality.

Work provided a greater number of challenges than is usual for a Friday. But at least I was able to focus properly on it. A few people have asked about the outcome of the operation but by and large people have, as ever, ignored the elephant in the room. Whenever I've asked about this most work colleagues say the same things. "I didn't want to pry" or "I thought I'd leave it to you to say something if you wanted". I can see that they are trying to be kind and there is that awkward boundary issue at work that doesn't arise with friends or family. Just has a tendancy to add to the isolation sometimes.

Left work early as usual for Friday to provide cover for the wife. Had a good time with the boy playing tea parties for the teddies and making tunnels for Thomas the tank engine. Happily he did not want to watch TV. Perhaps he is fed up with it from watching so much in hospital.

Friday, November 24, 2006

Friends aren't everything

First day back at work. Was a tough day. But made better by a load of mongs monging on a mong boardTM.

Work was very busy. Got home later than I wanted. Started to flag badly in the afternoon as tiredness from the last week kicked in. That there was a last minute flurry didn't help.

But I found that the mongs monging on a mong boardTM had started a campaign to vote for the boy's card. Was quite overcome by their kindness and the supportive comments. As was the wife. It was especially the case given the events of the last week and how lonely it can feel going through all this. That I've never met any of them doesn't matter.

The boy was lovely to come home to. Gave me a hug when I came in. And was then desperate to make me a coffee and for me to play with his marbles. Very hard not to be constantly hugging him.

Thursday, November 23, 2006

Picture this

The boy's Chistmas card is on a short-list for a competition.

Just before the boy went into hospital for his op, he was there for a scan. Whilst waiting, the wife got him to do a Christmas card for a radio station competition.

Bless his heart, his picture has been selected as one of those to be voted on. Closing date is tomorrow. But this is his entry:

Wednesday, November 22, 2006


This is to finish off posts about our week in hospital.

Before we left, the surgeon offered us a date for the operation at the end of next week. To allow the boy more time to recover and to give us more time with him we have left it that the operation will be in two weeks time.

It was with some pride that me and the wife watched the boy walk unsteadily off the ward, less than a week after the operation. Had a quiet afternoon at home. He tired very quickly and spent much of the afternoon watching TV. Couldn't really say no.

Auntie and granny came to visit which made him very happy. Pandas came as well. Auntie has been so good to us and him. Then tried to get him to bed early. Hopefully, being home will have given him more security and so he will have a better night.

Have finally told the wife and auntie about this blog. Didn't do so before as I wasn't sure I'd keep it up. They were ok with it, at least initially. Turns out the wife knew already but hadn't said anything. How much this will affect these posts remains to be seen.

Also, re-read posts from the last week. Was tempted to amend some for grammar and bits missing but have decided not to as that's what was important to me at the time about what he went through. Noticed for example that auntie's visits are recorded but not those of auntie m or Granny. This is either because I didn't see much of them or they didn't see much of the boy while I was there.

So, it's back to work today. Not sure how I'm going to deal with such a rapid switch back especially when the next op is so close.

Home is where the heart is

And today's surprise is... we're off home today.

Last night proved a re-run of the previous night. The boy went to sleep at 7.20pm. Awoke at 8.35pm. Asleep at 9.15pm. Awoke at 10.30. And so on. The morning's tally of saline nebuliser phials shows he woke up eight times. The difference for me was that I struggled to stay awake. Cumulative tiredness meaning I was on the edge of being asleep whilst doing the neb. And then collapsing into bed to fall straight asleep before the next awakening. Except one time I was giving him a neb and the next thing I saw was stars as I'd nodded off and hit my head on the metal bars on his bed.

The boy started to say "Home. Home" yesterday. As he says he is not in pain in his head and has done a bit of walking, they've said that he can leave to either go to the local hospital or home. A tough call that took all of 0.001 seconds for us to decide. Home it is. And back to hospital in two weeks for the next op.

Tuesday, November 21, 2006


Shocking night last night. Shocking day today.

The boy had hardly slept yesterday, notwithstanding the general anaesthetic. So when he fell asleep at 7.30pm hopes were high that he have a good sleep. Oh no. Awake at 9.00pm. Asleep at 9.45pm. Awake at 11.45pm. Asleep at 12.30am. Awake at 2.00am. It all becomes a bit of a blur after that. Nebuliser after nebuliser. And demanding that I gave them all. Feeling pretty punch drunk today and dreading a repeat performance tonight.

Today we were surprised to receive a joint visit from his neurosurgeon and oncologist. Never a good thing. They have decided that they do not want to wait for January for the next operation because of the risk that the tumour will take off before then. The tumour removed last week shows active cells. They therefore want to bring the operation forward to two weeks time. This is, in part, because the boy has recovered so quickly from the last one. He took his first few wobbly steps today. We are rather stunned by this unexpected turn of events. This probably means both his birthday and Christmas in hospital. We haven't had time to digest what this means for us, him or work.

Monday, November 20, 2006

The right way

There's such a thing as cancer etiquette for parents. It's unwritten. And no-one explains it to you. But you do pick it up.

I was reminded of this whilst speaking to a noob parent yesterday.

DON'T say "will the child be alright?" There's rarely a clear answer. And the honest answer is probably not.
DO say "how is the child doing?" This keeps everything in the here and now, which is where we live day-by-day.

DON'T say "how is radiotherapy / chemo / surgery?" It's so variable for each child.
DO say "how did your child find radiotherapy / chemo / surgery?"

DON'T say "what have been your experiences since diagnosis?" It's too upsetting to go through the whole tragic story. Only doctors can get away with it.
DO say "when did you find out the child was ill?" This allows the parent to say as little or as much as they feel able.

DON'T say "was X treatment successful?" There probably isn't a clear answer to this one either.

DO say "are they (the doctors) pleased with how it's going?"

DON'T say "I'm sure it will all be ok" it probably won't be.
DO say "I hope everything goes well" it's the best we can do - hope.

Good together

Good news from the scan. Surgery sucessful in removing part of tumour. But the surgeon reminds us that the next operation in January is more risky and uncertain to have such a good outcome.

The boy had a bad night. Only slept for a few hours. Demanded Mummy come in to bed with him. This doesn't bode well for tonight when I will be with him. He spent the morning complaining if I tried to do anything for him. Only Mummy will do.

His constipation has cleared [non-parents may wish to skip the next bit] he had a suppositary last night. Within minutes there was an almighty liquid rumbling from his nappy. Had a quick peek. Wished I hadn't. Four days backlog in one go. When I tried to clean it up the nappy could not contain it and it ran down my hands and arms. Meanwhile Mummy was saying well done. I was not so charitable. Which got me a bit of a telling off. Further squirty noises over the next couple of hours meant lots of time clearing up the mess.

He had the scan this morning and was as excited as ever to go for a general anaesthetic. Happily gave the anaesthetist his line for the medicine and asked to have the bleeping machine (sats monitor) turned on.

The surgeon came to see us soon after he returned to the ward. Happily she came to the bed. She said everything looked ok on the scan. The part of the tumour that she was trying to get has gone and there did not seem to be any complications. We will probably be here for the rest of the week before transferring to our local hospital. The next surgery is still likely to be in January. But she did remind us that the next operation was more serious. Both in terms of the difficulty of the operation and the potential side effects. We'll face that when we have to.

In the meantime the big bandage has come off the boy's head and revealed a large inverted J shaped inscision. Much larger than last time. His neck is a mass of yellow and purple bruises. But otherwise he seems fine.

Good old auntie came to visit again with her pandas and some bamboo for little panda. After she went the boy was desperate to see the doctors in the blue hats (anaesthetists) and got very upset when he realised he couldn't go again today. Strange boy.

Sunday, November 19, 2006

Monday morning dread

A quieter morning after the stressful ones that have gone before. Just as well considering how tired we are. But an oddly stressful afternoon.

I had a quiet night at the spartan hospital accommodation. A large Indian, a couple of glasses of wine and bed. Actually, as this was my first alcohol of the year a more accurate picture is a large Indian, a couple glasses of wine in front of the TV and startled to wake up and find it was 3am. Didn't actually sleep that well. Kept waking up to check on the boy only to remember he was with the wife back in the bay.

Unfortunately, the wife didn't have such a good night with the boy. Despite not sleeping properly the previous night he didn't want to sleep last night either. He kept her up until 3am wanting nebuliser after nebuliser. When she tried to go to sleep he made a fuss crying and generally getting upset. So much so that they had to replace his cot with a bed so that he could sleep with Mummy. But even then he only slept in fits and starts. She looked very fraught this morning.

All the puffiness in the boy's face has gone. And he had a reasonable morning, playing with his toys. He did have a lunchtime nap but afterwards didn't look rested. He wouldn't settle to anything. Behaving in that over-tired don't want anything way that is the worst of two-year olds. And constantly changing his mind every 30 seconds. Even a visit from auntie with the pandas didn't change his mood. That he's chronically constipated from the anaesthetic and morphine doesn't help. A swollen stomach does nothing to help anyone's moods. His or ours.

Tomorrow brings the much-anticipated scan and hopefully the verdict on the surgery.

Saturday, November 18, 2006

Stuck in the middle with you

A more difficult night. But some small steps forward in the day.

Last night the boy wasn't sleepy having slept so much of the previous day. So, he wanted me to stay with him and hold his hand until well after midnight. Got a few hours fitful sleep. No moaning from the other children but the usual peal from the massed ranks of monitors in the bay. Talked to some parents today. Something that doesn't happen too often in cancer or neuro wards. Too much worry about your own child to care about someone elses. All agreed sleeping in a high dependency bay is tough as you never get enough quality sleep. Makes an emotional situation that bit more emotional. Drains your reserves.

And in the early morning he started projectile vomiting. Luckily, he had another high quality nurse overnight. Not sure why he was sick as he hadn't been sick for 24 hours. Could be a problem with the surgery or something more mundane. Could be a bad reaction to the morphine. They're adopting the usual wait and see. But in the meantime the morphine has been stopped. We won't know anthing for sure until Monday's brain scan.

Better news is that he agreed to sit up in bed for the first time. Needed to hold on to the side of the cot and my hand to steady himself. Swayed gently like someone the morning after a heavy night before. Was able to watch a little TV. So his eyes seem to be able to focus and there's no
apparent squint. Hard to asess his hearing as the heavy bandage round his head covers his ears. And we won't know about his balance until he's ready to get out of bed.

The range of tubes and monitors are gradually being reduced. He now only has his two permanent lines and a canula in his foot. He very much wants this removed. But it will stay for a while incase they need extra intravenous access.

Had another visit from auntie. To his delight she brought big panda and Chi Chi to visit him. He was happily introducing big panda to little panda. Little panda has rather been in the wars. He was the recipient of one of the projectile vomits.

We have got a single room for tonight. So as it's unisex this time I'm going to have it. I'm feeling the worse for wear today. Me and Mrs Ctel mainly do tag team care to reduce the wear and tear. Get a bit of rest while the other looks after the boy. Since the morphine stopped he has
retched a few times and said he wants to be sick. But so far he hasn't. Let's hope there's more improvement tomorrow.

Friday, November 17, 2006

The Boxer

The boy may not be a political heavyweight but he looks like he's gone a few rounds.

Puffy black eyes, swollen cheeks and a fat lip. The immediate after effects of the surgery are making themselves visible. He's spent most of the day asleep with short periods awake. He clearly doesn't want to move as this makes his head hurt. But he has to be turned every few hours to stop the blood settling too much on one side. He hates this and has a few tears.

He's only had one significant time awake - when auntie was here. He wanted to cuddle little panda and point out little panda's head bandage. He even managed a wan smile. But he has no interest in sitting up or doing anthing that requires any effort on his part. He does want to hold hands which is lovely.

You always end up eating too much bad food in hospital. So, for a bit of variety, I went out for fish and chips. On the way back I was accosted by a man. "Boss. Boss" he said. Oh no. He wants a cigarette or some money for a cup of tea or his bus fare (for which read alcohol). But I was wrong. "Have you got the drugs?" He looked quite put out when I said I hadn't. Strange
end to the day.

Black night

I'd forgotten what fun a night in hospital is. The boy had a mixed night. Much as predicted.

Post-op is always a scary sight. Tubes everywhere. An arterial line in his hand. Catheter to monitor his wee. Two canulas in his foot. Heart montitor pads at the shoulders and chest. Sats monitor on the finger. Oxygen tube attached to the trachy. The upsetting thing is that they say "you can give him a cuddle" but the lines are such that there's no way you can do it. And
with neurosurgery you want to leave them lying down anyway. So you ineffectually stroke their hand or just sit and watch them.

He did have a high temperature overnight and vomitted regularly until the early hours. But mostly the morphine helped him doze through it all. He is still asleep, cuddling little panda (who has acquired a head bandage as well). His face is rather puffy after the operation.

It's always hard to sleep on the ward. Cubicles are relatively the easiest but high dependency bays are much harder, since there are 4 or 6 children there and a couple of parents plus two nurses.

The boy is in a bay. You sleep right next to his cot. You try not to be too deeply asleep, in case something happens. And with the boy, the trachy means it happens very quietly. The day was easier as the nurse looking after him was one that looked after him after his last op. This gives you confidence as everyone initially says how complicated he is. Didn't know last night's. Stayed up for quite a while talking with her about him and dealing with him when he vomitted. Cleaning him up and suctioning, trying to make sure that none of it got into his lungs.

Then tried to get some sleep myself. But bays are noisy places with monitors, syringe drivers and pumps of various kinds regularly bleeping. They always make me wake with a start to check whether any of the bleeps are from his equipment. And one of the other kids in the bay had a bad night, moaning about pain and shouting at his mother. Got two lots of three hours sleep. Bit gritty-eyed but a shave helps a bit psychologically.

Today's issue is his MRI, which the surgeon said he should have. Doesn't seem to have been pre-booked when the op was fixed. I reminded them and so now he's on a waiting list. It has to be now or not at all because of the swelling and then scarring. Because only we have the boy's interests at the forefront of our minds, rather than that of a number of kids, you spend some time trying to think ahead and check things haven't been forgotten. Might sound all very pushy parent but it is the product of a bit too much experience.

Thursday, November 16, 2006


The boy has had his operation. Only two hours, though he was in theatre for five hours. The surgeon thinks it was successful and the tumour from the fourth ventricle has been removed. No side effects so far. He can move his arms and legs. But the next 48 hours are critical as any side effects become apparent. Next operation in January all being well.

Long day today. Had to be up early to get him to hospital by 7:30am. But didn't go to theatre until 9:30am. He was thrilled to be there and to see the anaethetist. He excitedly got his line ready for the anaesthetic. Much to the surprise of the anaesthetist. The wife got very upset when he was being put under and only just made it out of the room before welling up.

He was in theatre for five hours but the operation only took two hours. The remainder of the time was spent sorting his trachy out and it having to be replaced for one that did not leak.

We spent the time having an ostensibly calm lunch trying not to think of his head being cut open. He was very sleepy in recovery but seemed to recogise us. Probably the effects of the morphine. The next 48 hours will be critical as his body reacts to the surgery. He can move his arms and legs. But we can't yet tell how well nor how his eyes are or the effect on his swallow / balance. He is very nauseous and is retching regularly.

At the moment he is sleeping. Breathing good but heart rate up as he is starting to run a temperature. I will spend the night with him. The nurses are very good and have taken us through the likely effects over the next few days when they expect him to get worse before he starts to get better. Let's hope we can get him through this period without him having to go to
intensive care, as happened last time.

Tomorrow, all being well he will have a MRI to see whether they got all the tumour that they wanted. This has to be done within 48 hours otherwise the swelling will obscure the true position.


And so the morning has arrived. He's now in theatre. Only waited 2 hours, which is pretty good by hospital standards.

He was amazingly keen to go to hospital today. And quite frustrated that the doctors took so long to be ready for him. He couldn't get his central line out fast enough for the anaesthetist. She looked a little stunned by such cooperative behaviour. Cheerfully telling them to clean it first and waving to the surgeon.

The wife was pretty cut up and only just made it out of the anaesthetic room before welling up. I've decided to try to wait for the outcome before getting upset.

Wednesday, November 15, 2006

Info Freako

To avoid thinking about tomorrow's operation, let's look at UK treatment options. From what we've heard from the various consultants, there seems to be a standard treatment for ependymomas in children. It goes like this:

  • Surgery (complete resection is seen as best route to a cure, anything less brings the already low odds tumbling down)
  • Chemotherapy (baby brain protocol - a mix of carboplatin, cysplatin, vincristin and methatrexate) to get the child to age 3 years plus but ependymomas are not seen as particularly responsive to to chemo
  • Radiotherapy (conventional)
  • Errr...that's it
If the tumour resurfaces there's either more surgery (only if the hospital think its worth it and it isn't going to cause too much damage) at their option or secondary chemo which is designed to extend life not achieve a cure (things like etoposide). Everything else is not licensed or only for trials when the patient is probably on the way out. Even things like Gamma knife therapy don't seem to be much used here on children.

Thanks to those that have commented (bit of a surprise). I am keen to know of other chemo or other treatments used elsewhere.


After yesterday's grumpy posts, something lighter. The boy has been getting more and more interested in photography. A child of the digital age, he loves the fact that you can see pictures immediately after they've been taken. He's started to take them himself. His early efforts were marred by his chubby fingers covering the lens. Now, we've persuaded him to remove his finger and point the camera at the subject, rather than at himself to check its working.

Little panda plays a game with big panda

Auntie comes to tea

Dada comes home (I think he was pressing the zoom on this one).

Monday, November 13, 2006

Stuck in a moment you can't get out of

Let's talk side effects, since we're now gearing up for Thursday.

Most likely: loss of hearing in one ear, temporary or permanent loss of swallow / cough / gag reflexes (trachy becomes permanent), temporary misalignment of the eyes (squint)

Quite likely: temporary or permanent hemiparesis (paralysis of one side of the body affecting one arm and one leg), loss of muscle control in the face (affecting tongue / speech).

Less likely: brain damage affecting IQ, loss of muscle control on one side affecting eyesight.

But the most difficult thing is that the tumour may be such that the neurosurgeon doesn't get part of the tumour to be resected but we get some of the side effects anyway.

Mirror Mirror

People do talk a lot of nonsense to you when you're the parent of a life-limited child. Great euphemism "life-limited". They mean "odds on terminal" they just don't want to say it. And it's amazing the range of euphemisms that come up time and time again:

What they say: "I do admire what you do for the boy."
What they mean: "I'm glad I don't have to put a piece of plastic tubing in an open wound in his throat."

What they say: "You are marvellous parents."
What they mean: "You do have to put up with a lot of crap don't you."

What they say: "Amazing how you're always cheerful."
What they mean: "Please don't cry in front of me. I wouldn't know what to do."

What they say: "I couldn't do what you do."
What they mean: "Rather you than me."

Parents of children with cancer are no different to the next person. They're just trying to deal the best they can with the hand they've been dealt. They're not supermen and women. After all, what are you supposed to do if your child has cancer? Walk away? So you keep taking it. And when you think there's nothing else to give, the situation demands a little more. And then some more. Logically, there must be an end, either to the situation or what you can take. Who knows which comes first.

Sunday, November 12, 2006


Friday's events by the boy, as told to Daddy:

Had a lie in. Mummy was sitting in the chair when I woke. I love it that there's always someone there when I wake up. But I was wet. After I let Mummy change my nappy I helped her change the sheets. I have to use a red alcowipe to make sure the matress is clean. This is very important. Then Mummy puts the undersheet on and I have to get back in the cot to help put the topsheet on. Mummy always says I'm very helpful but then she fiddles with the sheet after I've got out of the cot.

Went downstairs. Played with my toys for while. Helped Mummy with the washing up. Told her where to put things away and told her what to wash up. How did she manage without me?

Then the woman with the red car came. She put my car seat in the car. Auntie came but no pandas. Auntie said they were sleeping. We went on a drive. Saw lots of buses, went in a tunnel but saw no fire engines. We parked and I told Mummy we had to go and see lots of ambulances. Saw lots of ambulances and an ambulance car. Made sure I touched them. One was rather dirty, so Mummy cleaned my hand. Shame none had their flashy lights on. But waved to the ambulance men and women. They were eating. This is how ambulance people are. If they are not playing with children in the back they eat, drink or read the paper. I want to do this when I'm bigger.

Went in the hospital. Lots of toys there. Had a tea party with Mummy and Auntie under a table. Pity little panda was not here to have tea. Then went up and down the corridor in a yellow and red plastic car. Mummy chased me. Started to feel a bit tired but not going to tell Mummy that or she would make me go back in the cot for a sleep.

Went downstairs in the lift. I made sure I pressed the button to call for it. Went to see a woman with a white coat and blue hat. Offered her my wiggley line from under my vest. She gave me some white medicine while Mummy gave me a cuddle. Then I was woken up by Daddy being annoying and tickling my feet and stopping me putting my hands behind my head. But Postman Pat was there is his van. I vroom-vroomed him around the cot. Good to see Mummy and auntie were still there.

Then lots of people came round the cot and started talking to Mummy and Daddy. I got a bit bored and grabbed Daddy's hand so he would play with Pat. Then everyone looked pleased but Mummy and auntie had wet eyes. Everyone then left again. Shame, as I wanted to show them Pat and his black and white cat. Mummy and auntie went off to talk on the telephone. So Daddy and I found the yellow and red car to go up the corridor to look for Mummy, who was hiding. Then I waved auntie bye-bye. Did some more riding in the car until Mummy and Daddy said it was time to go. Went in a taxi home. Got rather cross when we didn't see ambulances before we left.

Got home and was only able to play a bit before I had to have a bath and go to bed. But as I'd had a snooze in the afternoon I played and read with the nurse for ages before I was ready for a nebuliser and sleep. What a fun day out.

After the watershed

My morning off. Should be resting not blogging. But there you go.

Tired. So very tired. Too much emotion over the last week.

Tuesday's MRI and worry about heavy-handed trachy changes. Wednesday's neurosurgeon call about possible third tumour. Thursday's day lost in the fog of trying-not-to-worry worry. Friday's wait for the second MRI and verdict. The relief that it was a red herring. Saturday's try desparately to enjoy the time with the boy. Followed by the emotional crash last night. I completely mis-handled a phone call to auntie, which was meant to be thanking her for what she's done this week. No good deed goes unpunished. Not sure what happened. But my blundering about made things worse. Compounded things by staying up too late last night.

Now we have to gear up again for the surgery on Thursday. Never a dull moment.

Friday, November 10, 2006

Everyday a story

What a day. But at the end of it the boy is still in there fighting.

It's been a hell of a last 48 hours since we heard that there may be something else in the boy's brain. But what is it? Another tumour or a blood vessel. Me and the wife have been trying so hard not to prejudge the outcome. But it was so hard not to jump to conclusions that it was another tumour.

The MRI took place yesterday afternoon. As I don't have much holiday left I went to work in the morning. The boy went to the Big National Hospital with Mummy and Auntie. There wasn't much room in the car so only little panda could make the trip. By the time I arrived at the hospital the boy had just gone into anaesthetic ahead of the scan. We all went for a nervous coffee down the road, making brittle conversation trying desperately to be witty and light-hearted.

We got back to the ward to wait for the call to go to recovery to collect him. It was strange being there again. We spent so many weeks there after his neurosurgery wanting to be somewhere else. And this time we were hoping that the scan will mean we can come back.

After a short while collected him. He was fast asleep. We took him back to the ward to let him sleep it off and to wait for the neurosurgeon to come back from a conference. With the boy asleep none of us knew what to do withourselves. Eventually, I woke the boy up by tickling his feet otherwise he wouldn't have slept at night. That gave us all something to focus on, giving him water, sorting out his feed and playing with him. The neurosurgeon eventually came back and came to the bed - always a good sign. Blunt as ever, she said it had been a red herring and there was nothing on the second scan. Auntie and the wife looked misty-eyed. Don't know about me. A relief of tension that we had got away with it. But followed by the renewed worries about surgery as the neurosurgeon started to plan a new date for the operation for next week. Never a quiet moment.

These days

Today's the day that we have the new MRI and hopefully the result. It would be awful to wait the weekend.

Didn't sleep very well last night and work is a bit surreal. Hard to focus on the day to day routine when something so large is looming in the background.

Thursday, November 09, 2006

Waiting for the great leap forwards

Here comes the future and you can't run from it.

The MRI is torrow but today we are in the eye of the storm and the boy is the centre of the eye. He carries on in his happy way helping with the washing up, washing clothes and making me coffee. It is both joyful and heart-breaking to see him toddle about the place.

Tuesday, November 07, 2006

The final countdown?

Our luck on the MRI roulette may have run out.

The neurosurgeon rang us at home with the results of yesterday's scan - never a good sign if someone so senior rings you. It shows a new anomaly in a different part of the boy's brain. They aren't yet saying that it's another tumour but they have cancelled this week's operation. He will have another scan later this week.

We can only hope the new scan shows it's an enlarged blood vessel. If not, it probably means the beginning of the end. But for now, we are just in shock and keeping our fingers crossed. All these prayers to various deities may not have worked.

Monday, November 06, 2006

I don't need this pressure Ron

Only a couple more days to go to the first operation. It now seems only too real and makes me queasy with dread.

Preparation for the operation started today. The boy had a MRI. A process not without risk. He has a trachy with metal in it. So, the trachy has to be changed for one without metal in it before the scan starts and then changed back to his normal trachy afterwards. This can cause some trauma to his trachy site - really an unhealed hole in his neck. Our nervousness is compounded by our experience last time when something happened during one of the changes to make his neck bleed. A horrible sight to go into the recovery room to find him moaning with blood and secretions frothing from his trachy.

This time it seems to have gone ok. But now we have the worry of the night as anaesthetic depresses your breathing afterwards. Not a good thing as this means he needs oxygen and puts stress on his respiration. This makes him more likely to have an infection take hold.

Let's hope he has a good night and the scan result is ok. Scans are a bit like Russian roulette where they add a bullet each time as the more he has the more likely there is to be a bad result.

At least a trip to hospital means that there were ambulances to stroke. Always a winner in the boy's book. In the bottom right corner of the picture you can just see his arm waving as the ambulance goes past.

Saturday, November 04, 2006

Bring My Family Back

Had a really nice day with the boy today. In the morning he supervised me doing the washing up. Telling me imperiously which order to wash things and where to put them when washed. And then he tottered off to get the sheets from his cot to put in the washing machine. That they were not dirty was of no matter to him.

Then he decided that we needed more milk and put on his prized wellies. The ones with blue stars on them and put his coat on and ordered me to get ready. This would have been more impressive if he had been able to point to the front door. He couldn't because his coat was on upside down and he was struggling like a drunk at closing time with incomprehension at what was going wrong.

His confident walking down the road and racing from drain cover to drain cover left me a bit moist eyed. Luckily, he counter-balanced this by throwing an almighty strop in a shop, complete with throwing himself full length on the floor and sobbing inconsolably as some mothers looked on in a mixture of sympathy, indifference and distain.

Best moment of the day was having to change the boy's nappy (what a stinker) at the side of a busy road whilst he cheerily waved at the traffic and passers-by.

Ebony and Ivory

Pandas are THE thing in the boy's life at the moment. They are friend and patient. There are two pandas in his life.

The boy's own panada - imaginatively called "little panda" - is the boy's alter ego. He has developed from being something to cuddle, to having a central line inserted, a covering dressing and vest. Poor little panada needs to have regular blood tests. The boy takes the preparations for these very seriously. Examination gloves must be worn, a blood test tray must be laid out with four syringes for hepsal, flush and bloods. The tray must be cleaned before use and the central line alco-wiped before each access. The blood taken must be put in specimen bottles and
shaken before being put in a bag for the lab. This process takes ages and may have to be repeated several times. Then little panada may have to go to hospital in an ambulance driven by the boy paramedic because panda is often ill with a chest infection.

The other panda is even more important and is called - bet you can't guess - "big panda". This is special as this is auntie's panda. He is only seen on visits to aunties house or on special occasions when he come to visit little panda and brings some bamboo to eat. When big panda leaves, the boy delicately kisses big panda on each cheek and gives him a hug before waving auntie off down the road.

Here comes your man

Some good news for a change. The Big National Hospital have delivered for the boy. We now have a slot for the MRI next week, ahead of the operation. The wife and I are worn out from the worry.

Friday, November 03, 2006

Under pressure

As if waiting for the operation next week and the worry about the risks weren't enough, the operation's suddenly in doubt.

Out of the blue a week after fixing the date for the operation, the Big National Hospital have decided that he needs an MRI beforehand in case there's been any change in the tumour. This sent our pulses racing as this is exactly what we have been worrying about as we watch his hair grow back. And another thing, they said, unfortunately there aren't any free slots and
you'll be on a cancellation list. No MRI, no operation we inwardly screamed.

It's just so tiring dealing with work, the boy, the wife and my own worries about what will happen to him and all our futures. Me and the wife look pretty haggard. But you just have to keep taking it. What else are you going to do?

Wednesday, November 01, 2006

Doctors get younger everyday

Ages and ages ago we agreed to be part of the training programme for medical students. Training nicer doctors by letting them get to know patients as people rather than as illnesses.

And so, this afternoon two first year medical students turned up to meet the boy and me - the wife having to go to a meeting at our local hospital about the operation aftercare. The students were alarmingly young, very earnest and rather sweet. He was tall and already looked the part. Just the right amount of dishevellment to his shirt and tie to imply he'd come straight from doing a long operation. She was more self-contained, watching and listening rather than asking many questions.

I took them through the sequence of events starting at the beginning of 2005, through admission, the shock, horror and disbelief of the first MRI scan, the neurosurgery, the gastrostomy operation, the trachaeostomy operation, the time in intensive care, the months in hospital, the failed chemotherapy, the radiotherapy, more chemotherapy and so to where we are now in our phoney war period, waiting for the operation next week. Goodness, it's a long list. He's been through so much. And it was surprising how upset I got in the telling, given how many times I've had to go through the sorry tale for doctor after doctor.

They were very nice about it and the boy was very good playing with his cars and diligently transferring smarties from one bowl to another. They asked some pretty direct questions including "How has it affected your social life?" which was quite funny. I told them we don't have one because we never know when we are going to be in hospital or out and if anyone has
the slightest illness we don't see them. But they also asked "How has it affected your marriage?" A question I guess you have to be very young to ask in such a direct and unabashed manner. I answered as honestly as I could in that I really don't know since we've spent so much time apart caring for the boy and so little time as a family let alone a couple.

They said they plan to ring us in a couple of weeks for a follow-up visit. I said fine but we didn't know where we'd be by then or if we'd be up to it. The boy walked them to the door, made sure they put their shoes on and waved them off down the road until they were out of sight.