Day 68 (Wed 13 Sep)
Thu, 09/14/2006 - 03:16 — endc011
I speak to Rachel to hear he has been content all night, having a feed at midnight and then a bit later at 0500h. He is still sleeping well, but is not much good at feeding during the early hours.

He is hungry but does not have the energy or interest to remain awake. Hence the NG tube does have its uses, but it is a bit artificial.

Rachel and June head into the hospital and have the usual wait around for the OK to go out into town. He gets the thumbs up and they do some shopping plus have lunch once again in the Wethersoons. This is almost a third home for us over the last few weeks. We have investigated other hostelries occasionally but it all overpriced and over described, and comes from the same source as Wetherspoons probably. Shame Wetherspoons do not do a loyalty card scheme. Fred is impeccably behaved as usual though, and sleeps through the whole shindig.

His weight had been causing concern because it was gradually dropping, which was at odds to his intake. He was taking just under 1 litre in a 24 hour period and we nearly always met this target each day. Some days we were a little short but Fred would simply not be interested, or played with the bottle and before you knew it, an hour or so had passed.

We decided to get him moving by allowing him 30 minutes feed time and then the rest go down his NG tube. Coincidentally the day we started doing this he went from 6.18kg to 6.32kg and is now 6.34kg, so that is good.

Today was the first ever time he has had solids, and has a little baby rice. He did not like it at first but Rach gradually tempted him and he took some in the end reluctantly. Hopefully he will get used to the idea and therefore I have been requested to ferret out the bigger bibs my aunt gave us sometime ago. Again a little milestone that we thought we might not see.

He is due in theatre tomorrow PM, so is nil by mouth (NBM) from 0730h. Hopefully he will work out the best way to get filled up beforehand by spacing his feeds this evening, otherwise it is rumble-belly for him tomorrow.

He was totally exhausted by his travels and gourmet experience today and has been fast asleep in his moses basket (now fully dried out) for a while.

Hopefully his slot in theatre will go to plan, and we can try him on the baby rice once he is settled again.

Day 67 (Tues 12 Sep)
Wed, 09/13/2006 - 02:22 — endc011
Fred and I had a right old time together last night. I ate my fish and chips and he had milk.
I watched the television and he just slept all the time. When I lifted him into his moses basket he did not stir.

I fed him during the night and changed him, and he did not whimper one bit. He has developed a knack of smiling in his sleep so that he does not have to open his eyes. The room is a bit cooler now so he gets extra blankets as he has a habit of dropping his temperature below 35c for a short while. I have mentioned this to the doctors, but he comes back up again in a short while.
This morning I get him ready although I am running late. I have everything planned and his feed takes longer than I expected. He has his medicines due soon, so I flush his NG tube with sterilised water before I start preparing his medicines. As I do this he starts to gag, and does a projectile vomit into his basket. This is followed by a few more. There is a danger that he will start floating in the stuff, so I pick him up and put him on the bed. This creates another wave of "fresh" milk that soaks the bedding and duvet.

He finishes and sneezes, giving me a big cheeky grin as if he has done something to be proud of. I am already late so I whip all the stuff up and to the laundry and change the bedding. Clean him up and give him a little milk. I speak with the hospital and wait a while, and then give him his medicines. He keeps these down and we eventually set off down the hill.

I hand him over to Kate, the Sister, who is looking after Fred today. I rush out to meet Rachel and swap seats and I drive off back to Paignton. Lots to do this next day or so.
Easy drive back and I get home about 1215h, just under 2 hours going.

I do various things around the town and do some correspondence to work, and the bank.
I ring Rachel and she has explained that Fred has had another good day. He might be having some pureed food tomorrow so the spoons I bought will come in useful.

Hannah the physio is really really pleased with him and he is holding his head much better now. She has not seen him recently because we keep being out but Fred seems to be thriving in that sense.

All seems well today and so Rachel and her mum head back with Fred. He is apparently watching television again with them and is laughing at something or other.
I will have a drink tonight I think, and perhaps a bite to eat. It is all a bit up in the air today in any case.

I have posted some more photographs. There is one of the ambulance that came to Torbay to collect Fred all those weeks ago. I saw it parked up in the ambulance bay of the BRI and thought I would take a snap. Fred was with me at the time and I think he recognised it.

Day 66 (Monday 11th September)
Tue, 09/12/2006 - 16:21 — endc011
Fred was a bit noisy last evening and did not really settle. When he did, just after midnight, I heard the sound of the patio doors in the play room trying to be opened. They are in the next room to us.

We are the only ones on the ground with the rest on the first and second floors. I had earlier checked to see if they had been locked but I only had a t shirt and boxers on so was reluctant to parade around. No one else was about, but as I went to in to the room I heard someone sniff or cough in there in the dark. I assumed a relative may be kipping in there so did not go in. When I heard the noises Rachel suggested it could be someone actually trying to shut them, as they are difficult to close. We nodded off to sleep but Rachel thought she heard one of our doors open but was too sleepy. At about 0400h I heard some noises immediately outside my window, which was wide open and a foot from my bed. It sounded like a saw being used but soon became obvious that it was a big dog panting. As I did not want the dog jumping through the window I gently closed it slightly.

I say a torch light and as I went to open the curtain to look outside I heard someone breathing just outside and my window being moved. I also heard footsteps.
Time to call the police I thought, which I did and they confirmed they were at the address with a dog unit, following a burglary and subsequent prowler.
That was the end of our sleep and we found the office next to our flat had been burgled. The noises I heard were those of the break occuring though I don't know who was in the play room just after midnight.

Fred has been good today and mum and dad visited. We had lunch and a wander around.
Fred is not putting on weight despite a high calory diet which is causing some concern. He could go on solids soon though.

Fred is with me now fast asleep so it is just us tonight. Hopefully no bogey man tonight.

Day 65 (Sun 10 Sep)
Mon, 09/11/2006 - 04:35 — endc011
Fred had another good night with us and slept well. He only woke at 0300h for a quick feed and then went back off to sleep.

Today is Rachel’s birthday. Not quite the way we thought we would celebrate it two months ago, but we still had our Fred dozing in his cot a few feet away. He had managed to sneak out of hospital and get Rach a present and card too.

We head down to the hospital and Sarah is his nurse again. We arrange to have his NG tube re-taped again as he was keen to dislodge it last night. This is done, as well as his obs and bloods. Joanne his doctor comes in and sees Fred. She is pleased with his recent blood results and gets one of his medicines reduced. She says that as he gets past the sixth month he can go to the next strength of chemotherapy. The protocol he is on – Interfant 2006 – has lower dosages for those less than six months. I am not sure exactly what this will mean in practice.

By midday we are allowed to go out until tomorrow. We head into town and have a leisurely stroll around with Fred peering around as normal. He does like his little jaunts out in the crowds. The sun is coming through the clouds gently and we head up to the pub for some lunch.
We go back to the house mid afternoon and decide we will not do much as it has suddenly turned hot. Fred’s temperature has risen again to 37.7c and hovers that way for a bit. He has had his second day of his cytarabine chemo today, and as the course progresses temperatures become more likely. However, the heat in the street and house does not help and he gradually cools down again.

Rachel has a kip whilst Fred sits quietly looking at his hands and shouting out every now and then. I sit and read the papers near him and we all have a really nice relaxing time. It has been a long while not to be able to be worrying about something or having to wait for someone else to tell us something. Today, this afternoon we were just sitting doing nothing and we all enjoyed it immensely. Fred has spent most of the day peering at his hands and is very happy with them.
I tried to get him to roll over but this was of no interest to him whatsoever, and cried when I tried to assist him.

Rachel and I had a meal tonight with Fred fast asleep in the bedroom and he seemed worn out with all his activities today.

Tomorrow my parents are coming up and we will hear of Fred’s plan for the week. I know he is in theatre on Thursday but other than that I am not sure.

The crane flies are coming out now, and with the windows open they seem to be getting in here looking for the light.

Not much else happened today.

Day 64 (Sat 09 Sep)
Sun, 09/10/2006 - 02:46 — endc011
Another good night with our Fred. He happily slept all night until about 0330h for a feed.

We wander down to the hospital a little later than usual, as it is the weekend. Yesterday it was fairly quiet, and when we get in a few have already gone out for the day.

We bump into a couple who have been in here for a while on and off. They live under an hour away and come here with their child often as a day case. They are surprised we are still here each time they visit. We get chatting and it is surprising that the time has flown by so quickly. Rachel and I do not do anything like the things we used to do now, and we have not really noticed it.

Sarah is his nurse today and we have not seen her for a week or two. She has been working nights recently and she is pleased is with his progress in such a short period of time. As it is quiet she organises for the doctors to do their bit and she does hers early on too.

Fred decides that today is the day he shall try and roll over onto his stomach. Whilst waiting for the doctors he continually tries to roll on to his side with partial success. He is determined to do it though, and gets his top half over on numerous occasions but can’t quite get his hips to roll over. He tries for quite a while, and then is worn out and bored by the whole thing.

Through good organisation we are allowed to go out just before lunchtime and there is not any need to come back unless the blood tests suggest otherwise. If this is the case they will ring us. This is good news for us.

We gather all our stuff and head up the road in the sun to the Bristol Museum. We keep passing it regularly and want to have a look around. It is really good and has a variety of exhibits. We spend a few hours there and then troop back to the house. This is the first time in two months we have been able to not worry about being back for tests etc, or some medication as we give most of these to him now. Only his chemotherapy is done by them really (other than the oral chemo we give him) so this is much easier.

As we pass the hospital we check Fred’s temperature in any case. He has risen to 37.7c so his on the up. We wait for 15 minutes in the foyer and it does not go down. He has had his cytarabine chemotherapy today, and this has in the past given him a very high temperature, and increased heart rate to over 200bpm. We decide to go in and see Sarah quickly. We let him lie on his bed for a bit just to settle and she comes in to check. As its quiet the other nurses pop in and play with Fred. He is still on form and starts his laughing again.

His temperature has dropped again so it may have been just a spike or that he was wrapped up too warm. We get the car and take Fred back to the house.

We bump into one of the other nurses from PICU who looked after Fred when he was there. She had not seen him for several weeks and was really pleased that she had bumped into him. Fred smiled at her, and she said she would write it up in the staff book down on the other ward that she had seen him, so that her colleagues would know about his recent progress.

He spends a lot of time looking around at everything. He turns himself quite to quite an angle to look out of the patio doors into the garden. Something out there fascinates him for a while.

Fed and re-wrapped in a new sleep suit he sits here with us whilst I do this ‘blog on the laptop and Rachel reads the Herald as well as the Evening Post. They are both almost the same format – knock the Council and Police, and complain about newly introduced recycling schemes. A bit of political back stabbing and people saying how untidy the place is. The same old names are in the letters column. The topics could come from a central source and each local paper just adds their own specific areas.

Otherwise it is a good day for us. Fred has enjoyed himself and is now fast asleep in his chair.

Day 63 (Fri 08 Sep)
Sat, 09/09/2006 - 05:53 — endc011

Today was bright and sunny but a lot cooler. Fred led the way again via the café at the hospital on the way down the hill.

Not much happens when we get there and Fred has his bloods and obs done as expected. Hopefully we can get back out again as there is not much more to stay for and the weather is nice.

The doctors come around and Fred entertains them. They continue to be pleased with his progress and they tell us he will be going to theatre on Thursday to have his routine LP, IT and BMA.

His dietitian comes into review his feeds and decides to try him on a more calorific formula milk, High Energy. She discusses with us his recent feeding habits and he tends to slow down after 100mls, with us topping him up to the remaining 65mls. She arranges for the pharmacy to get some new feeds to us. The good thing about this is that it is pre-made in sterile bottles, and not made in the feed station. Those have to be chilled and stored properly, then warmed up. These are far more practical. This should help to get him putting more weight on.

We sit around again waiting for the nod to be able to go out again. He does not need any treatment today, but once the doctors have seen him and his bloods done we should be able to head out.

We decide that Fred needs a bath today and he is soon sploshing around the tub chuckling as he goes. We shampoo the little remaining hair on his head. He is then dried by towel and enjoys the whole thing immensely. Whilst we are getting a few things together, Fred is safely on the bed waving his arms and legs. He sees his chance and tugs at the NG tube, pulling it out by 5 or 6 inches. He thinks this is a great wheeze and we speak to his nurse. She has a look and whips it out in one single moment without Fred realising. He looks a bit startled and then starts sneezing repeatedly. A moment later he sicks up a little bit, but seems fine.

There is some thought that he can do without his tube possibly, though it is decided that one should go back in, as he has a number of medicines at times when he is asleep, and we can top his feed up if necessary. We did try to give him his medicines orally, but it was a lot a hassle for him and us, and just distresses him a lot. We also need to know that he gets all of his medicines without them coming back out in his dribble.

We are stuck in the hospital until nearly 1600h so another day is wasted. It is a shame because with a little organisation we could come in and go out again and the staff could concentrate on those remaining. We head over to Wetherspoons for a quick drink with Fred and he enjoys the outing. Without his tube, he looks totally normal and beams at the ladies passing by. Many give him a big smile.

We return to the hospital while later. As we do so, we see a very elderly vicar on a chopper-style motorcycle wearing long black flowing robes emerging from the hospital car park. He looks absolutely terrified (or confused) and avoids the red traffic lights by wobbling around the traffic island on the wrong side, to the amazement of pedestrians. Oblivious to the attention he is getting he lurches out into the line of cyclists and fast moving traffic which have to stop for him. Revving the engine constantly he coasts out into the main road pushing himself along with his feet. He engages first gear, and heads off down the road with his feet dragging behind him unaware of the chaos he has caused.

We get back in and are given bags of new drugs and so Fred heads up the hill carrying 24 bottles of milk plus everything else.

We get in and he again relaxes in front of the television whilst we unpack his things. He starts chuckling at something and I join in with him. We both start having a laugh and he does his first ever proper laugh. It is like a baby’s “ho ho ho” but he keeps on doing it again and again, getting more excited as he goes. I am laughing, he is laughing, and so is Rachel at this spectacle. I have to stop him after a while as it might do him some harm. He then stops suddenly and I think a poo is on its way.

His movements and co-ordination are rapidly improving and he is ready to start rolling around a bit more. We try him on his front again, a position which he used to like before he was admitted. He is a bit gripey at first but gets the hang of it.

Fred later goes to bed happily and is in his moo suit again. He also has his “power pants” back on once again. These are his reusable cloth ones and he seems fairly content with them. He is fast asleep but manages to take in 130mls through a gentle slurping action. My mum and dad bought us a digital ‘in the ear’ thermometer the other day. It is the same ones as in the hospital and only take two seconds to get an accurate reading. It means I do not have to unwrap him in the night and poke a thermometer under his armpit and wait two minutes or more. Checking his temperature is vital as it indicates his general well-being. An infection can occur rapidly and could be really serious for Fred. Also Fred, if unwell, can drop his temperature rapidly causing different problems.

Day 62 (Thursday 7th September)Fri, 09/08/2006 - 03:28 — endc011
Fred had a good evening with us, having his last feed at 1800h and waking next at 0400h. That was good for us all.

He is sort of settling into a routine now and feeding well. He is off the Thixo D milk thickener too. He is taking 160mls now every four hours. He does not always finish his feeds, so is topped up by his NG.

Some more medicines have been reduced too.

It is sunny but cooler and we planned to go out for the day. We'd like to go to the museum up the road and then walk to the Downs. Fred is in his dungarees today, and has his new cream socks on to keep his feet nice and warm whilst we are out.

Our plans to go out are scuppered as we are still waiting for 'something' several hours later. Little point in going into town as the shops are closing soon. I suppose it's not like we are going anywhere anyway.

Anyway, we get the thumbs up to head home. Fred leads the way and relaxes in his favourite armchair once we arrive.

Whilst I am doing this Fred is staring at me. He grins every now and then. All in all, he seems to be doing well (touch wood) and is halfway through this batch of treatment.

We put him in his reusable nappies for the first time since July 8. Another milestone!

Day 61 (Wednesday 6th September)
Thu, 09/07/2006 - 04:08 — endc011
Fred has had a good day again today. He had a slight temperature last night due to his chemotherapy. That sorted itself overnight.

He goes out to lunch with Rachel and Jean and is well behaved.

I get back to see Jean off at the bus station just as the traffic gets heavy.

We head back and Fred is sitting in Sarahs arms smiling. The nappy is in a mess so it gets changed.

His arms and legs are more active now which is promising.

He comes home with us tonight and is currently sitting in his chair watching telly. l have brought some clothes of his back for him to wear. Emily bought him a blue racing cap and socks, with him wearing his hat on the way home.

His drugs have been reduced in number today which is good too.

Day 60 (Tue 05 Sep)
Wed, 09/06/2006 - 02:21 — endc011
I get in earlier than normal to find him in his doorway, looking down the corridor. He is very glum as he has been nil by mouth for some hours now, and he is very hungry. He shouts angrily but soon forgets about his stomach as I distract him with some toys.

He soon starts to chuckle and tries to say some things. He is tucked in under his crochet blanket, with just his socky feet poking out and looks rather comical if not indignant. I take a photograph of him and will upload it later tonight on to the 'blog. It comes time for me to leave and so he is no longer distracted, and howls the place down. It is hard to walk away from him when he is so unhappy and about to go to theatre.

I meet Rachel and Jean outside, and she goes in to console him.

He goes down to theatre at 1130h and has his LP, BMA and IT done. He comes back a short time later and extremely hungry and polishes off his milk with gusto.

The dietitian says he can go up to 160mls now every four hours, which is back to what he was on before coming here.

I meet some friends and go crabbing at the mill pond in Stoke Gabriel. The crabs are still there (visited there when I was small) and have not learnt that a piece of bacon tied to string means being pulled out of your natural environment. We collect something like fifty or so crabs, which are returned to the water for feed another day. I hope that Fred can one day get down there and teach the crabs a lesson.

Fred's day has been good but no news on MRI scan yet.

He is sleepy and ready for his bed earlier tonight. He gets wrapped up for the night, though no doubt he will use the time to re-fuel on his missing feeds, so will be more demanding on the nurses tonight I reckon.

Day 59 (Mon 04 Sep)
Mon, 09/04/2006 - 22:39 — endc011
Rachel leaves early this morning, as Fred had a quiet and settled night with us.
I head down the road, with Fred leading the way. His hat is too big for him but it keeps the sun out. His head wobbles all the way down St Michaels Hill without complaint.

My mum & dad are visiting today so Fred is spruced up wearing his tie-dyed suit. He is awake when they arrive but gets a bit noisy as he is hungry.

We pop into town with mum and dad at the wheel. Fred seems confident in their driving skills on the busy pavements and falls sleeps once again.

He waved them off at the taxi rank and they went back to Temple Meads.

The doctors were reviewing him and were amazed at how different he is from a few weeks ago. Fred was on form kicking and chuckling and just being generally lively. His normal spot is in his doorway where he greets his growing fan club. His arms and legs are getting quite strong now.
I signed his consent forms for his trip to theatre tomorrow. He will be nil by mouth from 0400h so will be hungry again. He is due some chemotherapy, a bone marrow aspirate, and another lumbar puncture.

His day is good and he is fast asleep at the moment (1820h) cuddling his white floppy rabbit sucking on his dummy. I tidy his room and head off. The evenings are drawing in noticeably now and I shall dig out some warmer clothes in the next day or two.