The boy had a good sleep. None of his recent tendency to be awake for a few hours in the early morning.
After the chores of the washing up and cleaning the nightime suction pump, we went to the shops to buy cake. For auntie. For that was what he really, really wanted on waking. He was delighted to see big panda and chi chi panda and to make them tea and me coffee. He was much less delighted later to have to leave. After a small 'fling yourself on the floor and sob pitifully' tantrum we left auntie's house.
However, we didn't get very far. The next house along in fact. While he tried to either plead with me to go back or have a strop to go back, I prepared his medicines in the street. Bit unorthodox. Got a few funny looks but reasonably practical. Was medicines that need to be dissolved in pots with either water or sodium bicarb. Good thing he didn't want to go anywhere for a while. Eventually, he lost interest in me and busied himself with some syringes and end caps. A source of more funny looks. Never seen myself as the local nutter before now but it's not normal behaviour.
Went home to Mummy. After a rest he was persuaded to go to the park on the promise of feeding the goats. Luckily the petting zoo was open and he was able to feed the goats and wave at the rabbits. 
We had tea at the cafe and then went to the playground. He went on the swings, where he is very keen that you stand infront so he can kick you from behind. A metaphor for life, I think. A lesson for us all. We are adults but the kids are in charge.
Got home late. He was tired and after going to sleep we took his temperature. Was up, as was his heartrate and resps; and he needed oxygen for the first time in a few days. Perhaps we'd overdone it with the trip to the park. I hope the next entry won't be from hospital.
There are the oldest scars, only faintly sensable by the tips of my fingers. A small white spider's web of scars. From the day he was born. Trying to get blood for a blood gas test I now guess. We only noticed them when he first lost his hair. Without his tumour we'd have never known.
There is the long bumpy double track of the main neurosurgery scar. Curving round and to the right. The taut skin of a new red scar. Blood visible below the skin. Each red needle mark paired by a pink needle mark. The new operation and the old. Little jolts for my fingers as they feel the bumpiness of the bone edges of the skull. Always my mind conjours up the whine of the electric saw.
Like a turning from a main road, the single scar of the second neurosurgery. Healing better than the re-opened other scar. A smoother, less bumpy road. A pink, almost white scar. Neat needle marks, like houses lining either side of a suburban road.
Feel the heat of his head through my palm. With hair, you never sense how hot the head is. How flimsy the skin. But I can't reach IT, a few centimeters under my hand. So near, yet so out of reach.
He shakes his head. The DVD over, he clambers off the sofa and lurches over the the TV to point out the next episode he wants to watch.
I hope it was a star - it's wrong to wish on space hardware.
First weekend home since the start of March. But an underlying queasiness that it might end at any moment and we will be back in hospital. He's still not had a night without oxygen since the start of March. And in trying to work out how we manage his secretions with drugs always in the back of my mind the worry. The worry that we are taking risks that might put us back in hospital if we let too much saliva get on his chest.
His chest is only just stable enough for us to be home. He is just able to manage in air during the day, though not at night. His cuff was up at hospital, though this seems to have been building huge resentment and anger that boiled over when it was deflated and he could vocalise at us and
everything else in a massive "it's not fair" rage that could not be assuaged.
As a result, we have been trying to work out if we can control secretions by trying a new drug. The hospital haven't much information about the right dose (only the maximum). We are therefore forced into trial and error within the maximum.
Had my day with the boy on Saturday. A firm approach by the night nurse had got him asleep at a better time than he had been slipping into in hospital. He had a bit of a lie in but woke up cheerfully. Deflated the trachy cuff and gave him some physio. Plenty of yellow custard comes up and his oxygen saturation eventually stabilises in air.
Go downstairs. Not sure what he will want to do and whether the old routines of play apply. Persuade him to help with the washing up but soon he wants TV. Have to try to familiarise myself with his new medicines and timetable. In hospital, I can afford to leave this mostly to the nurses and just administer what they bring. Now have to plan more rigorously, especially those medicines that need significant preparation effort or time. Makes it feel like providing care not being a father. Hope this will change and I lose the sense of so much of it being "duty".
Day saved by going to auntie. He goes in his trike wearing wraparound sunglasses, to protect his eyes. Am aware of the looks he gets from people in the street. But auntie's is a chance for him to make tea/coffee, see the pandas and, crucially, watch Cbeebies. We are lucky that she is so tolerant of us and him. Then take him to the shops before we risk pushing our luck too far. Hard work today. Not much fun.
The boy waiting to go home from hospital.
Spent the weekend in hospital with the boy while the wife had a rest. Long days. Here from 8am until gone 9pm. Ward short staffed so had to do all cares. No breaks offered on one day. Very tiring.
They boy's sleeping pattern all messed up. Won't go to sleep until after 10pm and up soon after 8am. But at least he is starting to spend some waking time off oxygen. Still needs it overnight but only small amounts.
Boys is cheerful except when trachy cuff deflated and he can speak. Unhappy at deflation because of secretions that then come down. But then so pleased he can speak again. Won't shut up. Always gabbling about something. Then so upset when I tell him it has to be reflated. Points to his mouth and says no - not able to speak. Tries to fight me off and then cries when it is up and won't look at me for a while. Cuff being up makes him subdued, partly he doesn't have the signed vocabulary and partly he misses speaking.
At least being off oxygen for a few hours means he can more easily leave the room to play on the ward. He likes playing with water. He will spend ages at a sink with the tap running putting water in a plastic cup and pouring it into a bowl. When the bowl is full he empties it and starts all over again.
Had a welcome visit from auntie, the pandas and little Stevie (Gerrard). Points to a picture of Stevie on his wall and makes the sign for big. Then points to the little Stevie figurine and makes the sign for small. Then throws both hands in the air, noiselessly shouts goal and pretends to bite his shirt (like Gerrard's goal against Olympiakos, which he loves).
Got him out of bed and in a little car which he can sit in and walk around the ward. Sometimes he wants to be chased, which is good for his weakened leg muscles. Even got him outside on the little balcony where he could play on the little slide. His first fresh air in a month. Have to be careful to do it when the balcony is in shadow otherwise it is too bright for his eyes to cope with.
Restart chemo on Tuesday, hope to get results of the CT scan of his chest and (fingers crossed) to plan to come home.
What is it?
Trachys are plastic tubes inserted into the neck through a hole in the throat to provide oxygen directly to the lungs, rather than breathing as normally through mouth and nose.
Why have it?
Mostly, because there is some problem in the airway between mouth/nose and lungs. This isn't the boy's reason. His is because he doesn't swallow properly. Therefore there is a risk that his saliva or food will end up in his lungs (aspiration) rather than in his tummy. The trachy helps stop this happening.
Are they all the same?
No. There are lots of different types. There are standard trachys which just have the tube and nothing else. Then there are cuffed trachys. These have an extra bit round the tube to block any air (or anything else) getting past the tube. There are a range of types of used in different situations. There are foam cuffs which form permanent blockages of the throat. There are air or water cuffs which can be inflated and deflated according to need from a little bulb on the outside of the tube. The boy has a water cuff trachy. A cuffed trachy means that no air is getting past the voicebox, so that means no speech.
What about trachy care?
The water cuff has to be deflated and reinflated every twelve hours. He hates having it done. When the cuff is deflated anything sitting above the cuff has nowhere to go but down into the lungs. This makes him cough and choke until it is suctioned out.
Suctioning is a major part of trachy care. Catheters are used. These are thin flexible plastic tubes which are put into the trachy tube to suck out secretions. The trachy interferes with the body's normal way of clearing the lungs, so the catheters help it out. You have to careful to use the right size for the tube and to only put the catheter in as far as the bottom of the tube. Any further and you can irritate or damage the windpipe.
The trachy is held in place with ties and a dressing to stop the trachy rubbing on the skin. The ties go through little loops on either side of the trachy and round the neck. Some people use velcro ties. But because the boys was only 16 months when he had his fitted he would soon have figured how to undo the velcro. Instead, we have fabric ties which are knotted in place.
The ties have to be changed everyday. A two person procedure. One to cut the ties and replace them and the dressing. One to hold the trachy in place while it's being done.
How often does the trachy tube have to be changed?
This seems to vary depending on the tube. But the boy's has to be changed monthly. We do this at home. The hospital taught us to do it. Not a pleasant experience but they wouldn't have let us go home unless we'd done it.
Do they ever fall out?
Apparently yes. It's never happened to us but we are unusual. The boy is pretty careful with his and only twice has he tried to pull it out. Both times when in a rage.
Anything else?
Yes. He has to have an emergency box with him at all times. This has spare trachy (in case the one he has block), a smaller trachy (in case his normal size won't go back in), spare dressing, tapes and ties and scissors to cut the tapes plus a syringe to deflate the cuff. And he has to have portable suction equipment and catheters. There is no such thing as a simple trip outdoors for him.
Disclaimer: for proper info about trachys talk to a doctor. Don't just take advice from the Internet.
Saw the oncologist. After the usual discussion of the boy's current health, we got down to the real business. What options are left to us? To be honest, although she took her time going through them, I can't quite remember but they seem to be:
- curative options:
(a) further surgery: not on the cards. The surgeon is not prepared to do it because of the location and the high risk of blindness and paralysis.
(b) radiation: either Gamma Knife radiotherapy or re-radiation like before, which is being trialled in the US. We will have to wait for clarity on whether he is eligible for either. The gamma knife seems particularly worrying since the residual tumour is on the brain stem, so risks are high. Re-radiation doesn't seem too hot since it didn't do much last time.
(c) chemotherapy: Boston Protocol is being discussed. Don't know much about it and depends if we can find a way of getting thalidomide down his gastro tube.
- management options:
(a) continue with etoposide on the grounds that it did a bit previously and the risk of secondary tumours from what would be a toxic dose doesn't matter since he is unlikely to live long enough to be affected.
(b) put him in a study: to test doses and effects of new chemo. Not wildly attractive for him to be a guinea pig given his frailty. He isn't eligible for most and would most likely mean spending our remaining time in hospital.
Bottom line is that the location of the tumour rules out the option with greatest chance of success - surgery. And probably rules out the option with the next highest likelihood of success - gamma knife - for the same reason. This leaves us with re-radiation as a pretty poor third choice.
Have to face that the boy's chances of surviving - never high at the best of times - are now as low as they've ever been. Am always mindful of what the oncologist said eighteen months ago, that he might see his fourth birthday but wouldn't see his fifth birthday. But as the wife said, no point wasting time crying now, we will have plenty of time for that later.
Having had that cheerful news, we had to return to the boy to prepare him for his next procedure - general anaesthetic for a CT scan of his dodgy chest. He did not want to go down. He is starting to fear being messed around with by doctors. He cried all the way down and in the scanner room. As if the day wasn't stressful enough already.
On returning, I let him sleep for an hour and then woke him up. It was as if his personal sun had come out. He was bright, cheerful, playful and engaged. Was a pleasure to be with. Managed to get him to do a little walking, holding my hand. After a month in bed his little leg muscles are terribly wasted. We also played "fetch" in which he throws little plastic bricks and I fetch them. The wife insists that this is good exercise for him after spending so much time just lying down. Perhaps. But it's hard exercise for me too.
In the evening we had the usual tears about deflating and reflating the cuff on his trachy. And a worse than usual tape change. He had been fine with this for two years but over the last couple of weeks it has become a real battlefield. I have had to do the holding of the trachy while the tapes are changed as my wife is not strong enough to hold him down on the bed. With a slippery trachy no easy task.
We had just finished when the night nurse arrived. He went balistic, waving at her to go away and saying no, no to her and tellling her to go home. She had a bad journey in and was very offended by his behaviour, saying if he had been in an open ward she would have gone home. She is very good and we can't afford to lose her. The wife took the nurse outside to placate her whilst I tried to restore order with the boy. Wasn't easy but a mixture of bribes and threats restored an uneasy harmony. He even said sorry to the nurse, albeit with ill-grace.
An unhappy end to an unhappy day.
The wife and I have been doing our best to carry on as normal and especially not to get upset in front of the boy. That can be hard as she's with him all day. But work for me has been difficult. Had a teary moment in the park on Monday and Tuesday lunchtime. It rather crept up on me. I had done reasonably well at supressing everything pending Thursday. But got caught out and overwhelmed by the enormity of the situation, of thoughts of his suffering death and where that would leave us. Not really what you want when you're trying to buy a sandwich.
He is still on oxygen. It has been approaching 4 weeks now since the original infection. The few hours off oxygen on Sunday did not last. And his oxygen needs are back above what they were previously. His secretions have been very wet again, which hasn't helped. Respiratory finally came in the afternoon. Renewed talk of ventilators and even moving ward, which fill us with fear. Instead we have increased his cuff to maximum and increased his hiocene patch dose. That is holding for the moment.
Meanwhile, he has carried on as before. Too much television watching interspersed with playing. He is very cheerful except when his cuff is deflated and inflated, when he cries soundlessly and pitifully. He pleads for it not to be put up, waving his hand no and pointing down. We try to explain but it always brings a lump to my throat.
He has become more bossy since being in bed for so long. When I arrived from work he asked if I wanted coffee? I said no. He shook his head again, repating the question while nodding. Eventually, I say yes. He is pleased and then waves at Mummy to go and make it for me and to make herself a tea whilst she's at it.
1. The consultant comes in with serious face asking whether we can "go somewhere quiet". These have become the most frightening words I can hear.
2. We go with the consultant and a nurse feeling sick and very small, like children on the first day at a new school.
3. We go to a small room, bare except for a few chairs, a few cheap prints on the wall and an ominous box of tissues.
4. We sit on the chairs furthest from the door. Never sure whether this is so they can exit gracefully or to stop us running, screaming from the room.
5. The consultants always start the same way "I'm sorry to have to give you this news but...". Then you get the news. They pause, then give you the news again in a different way in case you blocked it out the first time.
6. They offer tissues and ask if you have any questions. You don't really have any since you are reeling but ask a few anyway, since they've asked. You won't remember the answers later.
7. They ask if "you'd like a few moments alone" and withdraw.
8. The next half an hour passes in a blur. In our case, the wife talks non-stop inbetween the tears. I struggle to make sense of what she's saying but try to mumble a few things appropriately.
9. Then I go back to the boy and the wife goes to ring her family.
10. Finally, the nurses leave us all alone for a few hours. If you don't refer to the news none of the nurses will.
