Frederick James Wills

Born 19 March 2006 Died 2 May 2007


Saturday 23 September 2006

Day 78 (Sat 23 Sep)
Sat, 09/23/2006 - 21:26 — endc011
Last night Fred was sampling the delights of sweet potato and milk for his evening meal, and after watching the television he retired to bed.

During the night he mumbled and sang to himself loudly which provided another night of disturbed sleep for us all. He did finish his bottles though without going down the tube, so this is a little easier.

This morning he was in his dungarees and stretchy caps with points on, plus some substantial sneakers on his feet. It is much cooler again today although it is bright.

He is due more blood tests today to ascertain whether he can have his chemotherapy. They are taken when we arrive and a couple of hours later Rachel chases them up. Unfortunately they have not received them, so she takes them again. She is not best pleased at the loss, as it seems to happen regularly and she was minded that he gets his chemo. started, or we can go home.

Fred is grizzly this afternoon but when put in the right position will fall asleep immediately.
The results of the tests come back and Fred's platelet count is now between 27 and 33, so is far short of the 50 threshold. This means no chemotherapy for him today. The doctor suggests we wait until Monday to see what the count is.

Rachel, the nurse heads off to see whether we need to come in tomorrow or not. It would be nice not to, as if he is OK we want to go further afield. Not too far, but maybe out in the car. At the time of typing this (1430h) we do not know. If not we can still pop into town.
Another crate of milk is shortly to be delivered, so that will weigh the pram down by another 5.5kg, plus all his other equipment.

Otherwise not much going on today. Any further news I will update later possibly, if I can get the thing to work at the flat.

Day 77 (Fri 22 Sep)
Fri, 09/22/2006 - 22:39 — endc011
Fred was singing to himself most of the night which was fine, but we were both really tired. Good to have him with us though.

We came in and he has his bloods and obs done, as he is due some more chemotherapy today. It is dependent on his platelet count which yesterday was 53.

It is raining heavily by mid-morning and it all looks thoroughly depressing outside. The room is dark at the best of times, so the lights have to come on.

We weigh Fred and he is now at 6.64kg which is an improvement. Everyone thinks he has filled out a lot more and looks a lot better now, especially clockwise.

We bump into Shaun, Victoria and Violet who have just been discharged. We have a chat and they are on their way. It is day 77 for us....

As his platelet counts come back it is decided that at 42 it is too low for the chemotherapy, but not enough for a platelet transfusion. We are told we can head back to the flat shortly which is OK, but it is pouring outside still, and I only have shorts and a 75p umbrella. Fred is OK with his 100% cover rain screen.
We tuck into the juice run, and I have an Immune Boost which is a smoothie type thing. Very nice too.

A bit later the doctors ask if I am OK as I stagger out of his room with streaming eyes and a red face. I am pouring with sweat and coughing a bit. I explain it is the very hot noodles I have just eaten, and I soon recover.

We are then told Fred is going to have a platelet transfusion after all, plus his chemotherapy after it, which is at odds to what we were told earlier. We queried this, and after a discussion with Jo he is not to have his chemotherapy now, but another day. This goes for the platelets as well. We are free to go. Good job they did not start it.

We then get packed up and Fred is happily wrapped in his new blanket and his Dennis the Menace tank top, plus his baseball cap.

It has stopped raining now so we head back. There are not many in the ward today, so it will hopefully be quiet for them.

Have a good weekend.

Day 76 (Thu 21 Sep)
Fri, 09/22/2006 - 00:10 — endc011
Fred was a little bit sick this morning and so this delayed our exit from the house. He seems OK though and we head off as normal.

Colin and Gaye arrive as we do and Fred is on best behaviour. He is kicking his legs as hard as he can and trying to roll, or do something.

He tries egg custard today and this goes down quite well at lunchtime. We all head out for lunch and the weather is hotter, but rather windy for Fred. He seems to enjoy observing all the things that are going on around him and desperately fights off the urge to sleep as best he can. He always has his two favourite rattles on board for entertainment and he has not lost anything so far.

I see Shaun and Victoria who are at the hospital as well on another ward and have a chat with them for a while. I watch Wacky Races on the television at the same time - I have not seen it for years and it is just as good. They come down with me to see Fred, and I find that they have all gone. Fred reappears a short while later and we decide to go the canteen for a coffee. As we come out of the ward we bump in Frances who has come to visit as well.

We end up in the canteen and Fred is unfortunately sick and so we return to the hospital.
I do not know whether we can have Fred tonight as they might want to check up on him, but I hope we can.

He is coming to the end of his second stage of chemotherapy and I suppose sickness will come with it at some stage.

Day 75 (Wed 20 Sep)
Wed, 09/20/2006 - 21:40 — endc011
Nothing much is happening to Fred today but it takes time for him to be "processed." No bloods or obs today as they have discussed him having too much blood taken when he is so small. I think they are going to do it every other day and see how he goes. He still weighs 6.5kg and was a little sick this morning.

He seems as alert as ever today and is very interested in what's happening around him. Fred did not really go out today because it was a bit cooler and he was needed to be seen by various people.

The physio is really happy with him and she placed him in a "boo-bo" (?) chair which is to enable sit upright on his own. He only just squeezed his legs through and he could not yet support himself quite yet. He needs to practice this bit a little more.

Yesterday Rachel, June and Fred went to the Wetherspoons for lunch and when Fred was wheeled in, a customer came up and enquired whether Fred was ill, presumably because his NG tube was waving about. June explained he had leukaemia and the man chatted away for a while. He took 50 pence out of his pocket and placed it in Fred's hands, wishing him luck for the future. He told Fred the coin was "lucky" and that one day Fred would be as wealthy as him..... He was with a colleague and they were both dressed in suits so I thought that was nice. We shall keep the coin safe for Fred.

This was curious, as a few days ago we walking back to the flat when an old gentleman carrying a rucksack and many bags started to chat to us. He was holding a bunch of freshly picked fuchsia, which a lady had just handed to him. He was laughing and joking with us and asked about Fred. He gave the fuchsias to us for "the baby boy" and went on his way chuckling and waving. Two acts of kindness shown to little Fred in unusual circumstances.

I get back mid-afternoon today and took a different route in. I came over the suspension bridge which seems a lot narrower than I remember. Only 15 minutes from the M5 though. As I drive into the city centre I get a phone call from my old flat mate Shaun. He was in the area and was literally just around the corner. I drive past him and we have a chat. I have not seen him for some years now, other than at our wedding a couple of years ago. We might meet up tomorrow again hopefully.

Fred gets back to the flat and is placed in his fleecy sleep suit that Claire bought him sometime ago. It plumps him up a bit, but with the cooler nights coming he will appreciate it.

We have gone through the box of SMA High Energy, and have lugged another one home. Where ever Fred goes there seems to be a pile of glass bottles following him.
Fred gets very tired and gripey and so heads off to bed. He nods of quickly and will hopefully have a happy night.

Day 74 (Tue 19 Sep)
Wed, 09/20/2006 - 03:09 — endc011
Fred only wakes me noisily at 0200h for a quick sip of milk (30mls) before falling asleep again, and then again at 0500h. He has 160mls this time so he has taken 190mls in a short time. I am mindful of last week when his tummy got a little too full.

He dozes until 1000h today when Rachel comes back with her mum June. By then I have set him up in new clothes, new nappy and stacked the pram up with bottles and syringes. Everything has a place so we do not forget anything and he is ready to roll.

He is exactly six months old today. He seems chirpy about it too. June presents him with a tank top she has knitted for him. It is red and black horizontal stripes - Dennis the Menace style with matching bobble hat. He looks good in it!

He gets packed up and sets off for the hospital. I have decided to come back for a flying visit today and set off later than I would normally. Traffic is light again.
I do my "things to do" and run out of time again. Some I can do tomorrow but some can wait.
I speak to Rachel and Fred has been good all day with no real problems. His weight is increasing with yesterday him being 6.5kg which is good. He needs some strength back on him once the chemo starts in greater dosage.

I have tried to upload some more photographs of Fred which should work.

Day 73 (Mon 18 Sep)
Tue, 09/19/2006 - 00:59 — endc011
Rachel headed off early this morning with Fred having a lie in. He did not wake properly until after 0800h and was rather pleased with himself.

He is due his ultrasound today as well, so I get in for 0900h to make sure he does not get forgotten.

He is examined by the team on for this week and they are pleased with his general well being. Jo reminds me that tomorrow is his 1/2 first birthday and that she will celebrate it if she is not here. Six months have flown and I have almost forgotten what he was like before he came here. Good job we have the photographs and video.

My mum and dad arrive just after he gets his chemo potion. This is the one that can give him a high temperature so I have to watch out today for that. He has another two or three days of this particular one.

They arrive and we have some lunch with Fred. Dad does the driving again through the crowded streets and the over-stocked aisles of Boots.

I see them off at the taxi rank and head back to the hospital for his 1545h appointment with radiology. I take him down, book him in and hand over his vast file. This particular one is about seven inches thick. All sealed up though, so I cannot peer in it. I have learnt now not to want to know some information. If I need to know it they will tell me.

Fred looks terrified when I wheel him into the ultrasound room. It is all dark except for the glow of the monitor and other bits of equipment. There is a long paper towel covered couch for him to lie on by the side of the machine. He still looks absolutely petrified and his eyes dart around the room. A few seconds ago he was all smiles.

Off comes his moo suit and his belly is liberally covered with gel. The radiologist/sonographer spends 15 minutes or so scanning his stomach and abdomen. She comments at the vast lake of undigested milk showing up. Fred had had his lunch an hour earlier and pigged out on his High Energy milk. I warned her that to press to hard will result in hot milk shakes all 'round.

She prints off the various results. I did not look at the monitor this time as the last time I mis-read the information and worried about things I did not need to worry about.
When Fred had his chest x-ray for pneumonia or infection I had a peep at the x-ray on the lightbox. I saw the Hickman line and a big round lump which I thought was a growth or tumour. I did not say anything but the doctors later explained that all was OK, and there was not any pneumonia present. I pointed to the lump and asked what it was, to which they replied in a slightly puzzled tone - "his heart."

I stay here until 1815h today awaiting the OK from the doctors and I am asked to hang on as they want to speak to me. I am not kept waiting that long before Hannah comes in (she is new to the ward) and explains the results of the ultrasound.

There was nothing to worry about, and the liver and spleen are much smaller than they originally were. Then they were huge, and she was not present in those days. She had felt them the other day and wanted them checked out again. The results do not show any damage, and the flow to and from them seems fine. She said this was good news and that we could go home. Which I did, again with 24 glass bottles of milk and his supplies, plus the stuff my mum and dad brought for me. I hope Fred will behave for me, as I am single-crewed tonight.

Fred has been rather upset this afternoon but is now fast asleep for the trek up the hill.
Today has seen a new admission, and Fred is no longer the tiddler on the block. There is a 3 week old baby here who is very tiny.

Day 72 (Sun 17 Sep)
Mon, 09/18/2006 - 16:55 — endc011
We head breakfast at the flat this morning as not much would be happening to Fred other than the usual bloods and obs done. He had a good night again and has got around to the idea that to sleep until is starts to get light is a good thing. He does stir in the night, but if you are quick the dummy can be popped back in and he is off for another few hours.

We get in and the doctor takes a quick look at Fred. he is doing well though his liver and spleen remain enlarged. Tomorrow this will be looked at by an ultrasound. The time is not known yet, so hopefully he will get an early slot.

It has been nice these past few weeks to see that Fred can make a comeback after being so miserably ill. he is putting on weight again and seems his old self. We have to remember that the chemotherapy will be increased soon, and this will have a significant effect on Fred. It will likely knock the stuffing out of him for a bit, and will have the normal risk of his complications occurring. Whilst we know this, it is still difficult to accept that he will be purposely made ill once again.

We have sight of the dosage to follow. On one chemotherapy drug he is getting 75mg, but the new amount is someone near 5000mg. If this is simply 66 times more then that is alot. It might not be that simple, but either way he will be ill. That's 66 times more.

We then wander off into town for some lunch, and pass the foil-wrapped runners after the Bristol Marathon. Fred is asleep as he is wobbled along the uneven pavements.
We get back early today and sit and do nothing really. Read the papers and have a doze. Fred sits with us playing with his rattle watching the television. He too soon drops off.

Rachel gets his nappies in the wash. We have gone back to using his reusables which he likes. You have to be more careful with them because of the chemo in his poo, but they seem to be working alright. They can leak around the legs now because he is a bit skinny in that region.
He gets his feed and tries the banana puree again. Not much success on that one so I will try the baby rice once again tomorrow. At least the flavour is familiar but not the texture. I have been lent a book on baby foods which gives some inspiration.

Fred is put to bed early as he has been very active today, kicking madly in his cot and on the floor. He gets a bit gripey, but soon is back in the happy world of Nod.

Day 71 (Sat 16 Sep)
Sun, 09/17/2006 - 01:14 — endc011
Fred had his last feed at about 2000h last night and slept until 0530h this morning. I think he is getting the message hopefully.

Nothing much is planned for him today so we get in a bit later than normal. He gets his bloods and obs done, although we are advised that he needs a blood transfusion. His haemoglobin levels are lower than they should be. The blood should arrive within the hour, which means we can go out after that. The transfusion will take four hours.

Unfortunately the blood does not arrive until 1545h, so that means we have to wait until 1945h at best before we can head back. Not much else to do but nap and read a book then.
Today the staff feast on pizzas from Domino's and then later on milkshakes from a new outlet down the road. Yesterday a parent brought in two huge pavlovas. It seems to be a regular event all this feeding.

The doctor comes in and has a look at Fred. He confirms he will need an ultrasound on Monday to see how the flow to the spleen and liver are working. Apparently these should not be enlarged, and could be due to a number of things. Whilst they were enlarged when he came in, they did reduce for a while.

It could be due to an infection, a blockage or clot, or to a reaction to one of his drugs. The ultrasound should help them diagnose what is up.

He is generally peaceful during the day but does shout out unexpectedly, presumably for fun.
He tries some banana and apple puree in a tiny amount but did not seem that impressed. He prefers milk today.

The weather is much cooler now, and the evenings seem to be getting darker quite quickly.
Tomorrow is the Bristol Half Marathon so we might wander down, but I guess it will be over by the time we get along. I think a number of the staff here are running.

Day 70 (Fri 15 Sep)
Sat, 09/16/2006 - 18:48 — endc011
Fred was a little restless in the night and a bit more active. He is taking his feeds well at the moment, with only a small amount going down his NG tube.

Another quick breakfast in the canteen on the way down to avoid the rain,which is coming in now. No need for his rain cover yet though.

Not a lot happens today with Fred. It is Friday which means there is the end of week handover meeting and this goes on longer than usual. This one goes on for two or three hours I think.
This means we have to wait around a bit, so Fred gets some of his newly acquired baby rice. As I try and get him interested, his initial tastings are rewarded with lots of grimacing. Gradually he moves it around his mouth and it seems to be disappearing. A few more attempts he lets us know he has had enough. He washes the bits away with the rest of his milk.

The doctors come in and say Fred can go out for the day. They say that early next week he is to have an ultrasound of his liver and spleen as they have become enlarged again. I recall someone saying this may re-occur but they want to check the efficiency of the liver and spleen as this will dictate his future treatment. Another thing to worry about.

The computer in the hospital has returned, but later packs up again - hence this 'blog is late.
We go off into town and the library in the afternoon. His pram is loaded to the maximum today with 24 bottles of milk, and 18 bottles of water, plus all his other stuff we normally cart around. My legs feel like lead at the end of the afternoon which is unusual. All this walking had made me a bit fitter though.

Fred's evening is with us and he falls asleep after much playful activity. We are both absolutely tired this afternoon, but keep Fred happy.

A day where not much happens but it is nice to do a few trivial things without having to worry about things for a few hours.

Day 69 (Thu 14 Sep)
Fri, 09/15/2006 - 06:22 — endc011
Fred had another almost good night back at the flat, but woke frequently and mum and June head back down the hill mid-morning.

He was due in theatre today for his LP, IT and BMA. and went down at just after lunch. This time they anaesthetised him with gas rather than using his line which they have done previously.

When he gets back to his bed he is grumpy and is normally starving. This time he takes his food but is sick quite quickly and appears a bit groggy. The drugs and procedure will normally give him a bad headache so we do not know whether it was the procedure or the anaesthetic. Next time we will see if he can have his anaesthetic by his Hickman line.

The doctors are still really pleased with his progress so far, and his weight has increased to 6.42kg which is good news.

Fred has not done much today really as he has been hanging around. We bring him back to the flat and he sleeps a lot due to his busy day.

I see June off at the bus station and bump into one of the doctors here. She is pleased with Fred’s progress as well which is cheering. He even remembers his weight gain today.

He is put in his moses basket and hopefully will sleep well.

Otherwise not much more than that really today.

Thursday 14 September 2006

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.

Sunday 3 September 2006

Day 58 (Sun 03 Sep)
Mon, 09/04/2006 - 03:40 — endc011
Today Fred is 24 weeks old. 24 Sundays ago Fred arrived after a difficult time at 0004h in Torbay Hospital. To date he has spent nine weeks of his life in hospital, which is just over a third of his life so far. It won't be long before he has spent more time "inside" than out, missing out on all the things he, and we, should be experiencing.

We are starting to enjoy some of his little landmarks in progress, 'though in hospital it is a somewhat artificial atmosphere. Before this all started, a number of strangers (when seeing Fred) would tell us to enjoy these early days as they would fly by. I still feel very much short changed in this respect as Fred's development is somewhat repressed, but is coming on.

It is now 0320h, dark and wet and Fred starts to stir in his travel cot. Outside it is raining heavily but not windy. The full rainwater gullies are gurgling outside our open window and it all sounds rather restful. We check Fred's temperature and change his nappy. All normal there. He gets a feed and the first 15 minutes are spent on the bottle. He clears 90mls in that time.
He makes some spectacular "basement" noises in rapid succession, proudly soiling his newly applied nappy. His grin is from ear to ear - a mixture of mischief and relief I expect. I feel like a war correspondent lying here quietly whilst Rach is in action in the low light of the table lamp. The remainder of his feed will be put down his NG tube as he wants to sleep now.

As we pass St Michael's Hospital we pop into the Hillside Restaurant for breakfast. Great service so we will pop in whenever we are passing.

Fred's recent stability means he is allowed out once again today and tonight. As it is Sunday we take Fred to the monthly Slow Food Market and see our favourite sausage makers again who are from near Chagford. We stock up our little 'fridge and have lunch in the pub. The weather is dry and bright for Fred's little outing.

We take Fred back home at 1600h - the earliest yet. He can stay tonight and happily watches television from his bouncer chair. He seems very contended.

Day 57 (Sat 02 Aug)
Sun, 09/03/2006 - 03:28 — endc011
The hospital PC is still being worked on. I have to create this text in Word on my PDA, and then upload it via my mobile on to the 'blog'. Somehow during this process paragraph breaks are removed which makes it look like one ominous block of text.

Today it is raining quite hard and the mornings are noticeably darker now.

As we have done for the previous 57 days, we troop out of our front door each with a carrier bag, turn right and walk over uneven flag stones with brambles overhanging the pavement. We pass the abandoned Vauxhall Nova whose tyres are now flat, the his and hers Mini Coopers parked together, the turqoise VW camper and the refrigerator that has stood defiantly on the pavement since we arrived. Past the scaffolding and temporary traffic lights which have been stuck on red most days causing frustration to the drivers. Down the winding access road into the Childrens A & E, although we have yet to see a child with a saucepan stuck on his head. Up in the lift to Level 5, left then left and through the doors into Ward 34 Oncology. We have spiri-gelled our hands two or three times by now and Freds cubicle 5 is at the far end of the ward, by the nurses station.

Today he is on the floor sitting in a baby bouncer, amongst the nurses chomping on his dummy.
The doctors reckon that he is OK to be taken out today and possibly tonight. He will shortly become neutropenic and they suggest we take every opportunity to take him out.
We get Fred ready and he goes back into his own pram happily. It has been two months since and it is lovely to see.

It starts to rain so we head off in the car instead. This is another first for us all and Fred is fast asleep before long as we join the Saturday traffic slowly moving around the Broadmead redevelopment.

Pushing Fred along it is easy to forget that Fred is a poorly boy, as we seem to be slipping back into "normality" very easily today. It is just like old times........ He is due his chemotherapy when we get back.

We should hear the results of the MRI on Monday with any luck. Fred has hiccoughs once again which dislodges his dummy and annoys him. He also gets a temperature (37.4c) mid-afternoon which scuppers the rest of his day out unfortunately. He is full of beans and is wriggling, chuckling and smiling a lot today.

At 1800h Fred is checked by Alice, his nurse, and she gives the OK for him to stay with us overnight. We head up the hill in the rain loaded with milk and his drugs. We plop him in a baby bouncer and he sits watching TV.

Day 56 (Fri 01 Sep)
Fri, 09/01/2006 - 18:33 — endc011
Today we hope that Fred can go out into town, and possibly stay with us tonight. It will have been over 48 hours since his last temperature.

When we get in Fred is on his bed swaddled up. He looks pleased to see us and wobbles his mouth excitedly. His cow outfit needs changing today too.

His BP is checked as is his temperature. His temperature is at 37.5c so it looks like his trip out will be cancelled for the next 48 hours again. We had hoped to get Fred's pram back into use.
We strip him down to his nappy but he is still cheery. He gets a massage with some cream, as his skin is really flaky now. It is a very very fine layer that dusts off easily. It fills his socks, glubs and suits.

I speak to our GP in Galmpton as well today. She was the doctor who thankfully referred Fred to A and E at Torbay all those weeks ago. I explained his progress and discussed a few other things. Our time for his diagnosis was "instant" compared to others here. Some have waited months and months before finding out why their child was ill. Many of them endured numerous visits for tests each with different outcomes each time. We knew Freds illness within 6 hours of going to Torbay. For that Rachel and I are so grateful.

He was on three hourly feeds of 115mls but it is decided that Fred can have his own "eat all you can" buffet from now on. He can have his food whenever he wants and this is what we do. He consumes just over 200mls in 90 minutes happily. We are mindful not to over feed him, but over the last few days his weight has increased to 6.2kg. He did drop to 5.9kg a few days ago which is someway from his last weigh-in at home which was 6.86kg (15lb 2oz). The chart suggests he should be around 7.8kg (17lb 3oz) but Fred has been left behind now. Hopefully he will catch up with bigger feeds.

A bit later the Dietician came in to review Fred's feeding strategy. It will now be 130mls every three hours until 2200h, resuming at 0600h. She will also be consulting the Speech Therapist about Fred starting on solids. He is chewing and eating things more now and salivates when we eat.

The doctors come around for the weekend handover. Fred is looking good and he will be having a new part of his chemotherapy tomorrow. He is due a LP on Wednesday, with another bone marrow aspirate being done. He will also have some of the chemo he missed when in PICU, this being the Aspariginase. This drug is fundamental in his treatment and whilst it is late, it is much better than missing it altogether as first feared.

Friday is the "Juice Run" here and this time we decide to subscribe. I order a Detox Express and Rachel orders a Hangover Hoolie. They taste really nice and Fred gazes intently at the coloured containers.

The rest of his day is spent with him vigourously kicking his legs and punching the air in just his nappies.

Day 55 (Thu 31 Aug)
Thu, 08/31/2006 - 20:18 — endc011
Today Fred was awake when we arrived and had unravelled himself from his swaddling towel.
Nappy changed, he gets put into his Fresian cow outfit.

Joanna is writing up Freds notes into some form of summary. She states that it is like writing "War & Peace" as she had spent over an hour scribbling but she had only just got to the point of him leaving PICU! And that was five weeks ago, so she has a long way to go.

A new couple have arrived next to Fred. They are from Paignton too and we thought they were familiar. It was only when her parents arrived yesterday that we recognised each other. I let them read our Heralds.

Today the communal computer was taken away. I overheard the Sister talking to I.T. about "images" that had got though..... I last saw the PC tower being carried off by an I.T. Techie. The relevance of this is my source of internet access at this time of the day is now my PDA and mobile 'phone combined.

The doctors remain pleased with him and agree the frequency of his feeds can increase.
Sam visits and encourages Fred to baby-babble. He is starting to make sounds and imitate us. His tongue is strengthening more now and this is a new form of entertainment for him. He finds something funny anyway.

Fred's day is good and all being well he can come out again tomorrow.
I might head over to the library for computer access.

Day 54 (Wed 30 Aug)
Thu, 08/31/2006 - 01:01 — endc011
I spoke with the hospital early this morning and found out that Fred had been OK overnight and that he was settled and dozing. Rachel rang a short while later to say that he had been smiling though was not that hungry.

The doctors think it was one of his chemotherapy drugs giving him a temperature and were not unduly concerned. However, they had given him some different antibiotics and he will get a blood transfusion later on in the day.

Rachel and June stay with Fred, but sadly head over to Wetherspoons without him. He is not allowed out today or tomorrow, and is likely to get neutropenic at the weekend or before. It looks like his roaming days are temporarily over for the moment.

I had a nice time back at Paignton and I met up with Wayne and Claire. Popped into Sainsburys and saw Dawn and caught up with the latest happenings there. It was good to see mum and dad too and collect our post.

I head back on the motorway and meet up with Frances at Taunton for a quick coffee. Head into Mothercare and get Fred some Fresian Cow sleep suits, and a red hat which were in the sale. His head is bald now (except for the Nigel Kennedy nest on top) and as the summer is cooling his bonce needs protecting.

When I get back I manage to see June off at the coach station.

Fred is in his bed smiling when I get back and he is connected to the machine once again. he has an activity centre over him which he enjoys. He looks peaceful and has the radio on in the background.

My stomach is rumbling, and so is Fred's by the sound of it. He might be having difficulty with his feeds because the teats are too hard on the disposable bottles. I have his old bottles here and we will decant the milk into that to see if he is happy with that.

I have also brought his pram and car seat along for the future. That was nice loading it back into the car and putting the "baby on board" sticker back in the rear window. I never have really understood the real meaning of the stickers, but it was the first thing I did when Fred was born in March. I had always wanted one. In the early days here we did not really think that the pram would be used again, or his car seat, but hopefully it can clutter up his room here. It is much more comfortable than the ones here, and can lie flat too. Plus the wheels and tyres are better and can handle the dreadful pavements more adequately.

Day 53 (Tue 29 Aug)
Wed, 08/30/2006 - 07:34 — endc011
I am heading back today and go in to find Fred having a cuddle with Karina, at the nurse’s station.

He is a bit gripey today and I give him a hug, though this does not cheer him up one bit. I see he has ‘gummy’ eyes today and he had a bit of this in one eye yesterday. Now his hands are more active I think he might have conjunctivitis or something like that, as he keeps grabbing at his eye lids I cannot see any stray eye lashes in there. They have already taken a swab for checking earlier on.

Fred cheers up and is due a feed. I daren’t start feeding him now as Rachel and June are due back soon, and I need to jump in the car and drive it back down to Devon. Fred understands and I give him a big kiss as I set off down the corridor. I look back and see him peering at his hands intently once more, sitting in his pram.

Rachel and June are outside reception and we quickly catch up with the latest. I hop in to the car and set off back to Paignton. The weather is sunny and the roads are very quiet.

I speak to Rachel later and Fred has had another good day. Doctors are pleased with his progress and he is OK to go out again today. They suggest he stays at CLIC tonight and Rachel and June agree this is a good idea. Fred thinks so too.

They take him into town and his first visit to a public house since coming here. They go to Wetherspoons Commercial Rooms for lunch and Fred is on best behaviour. He is catching the eye of the waitresses again, and does not make a sound or cause trouble. He remains alert and enjoys all the bustling activity around him. Its nice and cool in there and is ‘no smoking’ so every one is happy.

The rest of his day is good, and he heads back home late afternoon with Rachel and Grannie. He should stay the night once more.

I head out into to town Wayne and go the Embassy Tavern for something to eat. Another marvellous meal of mussels followed by steak, and a few beers.

Whilst we are there Rachel rings to say that Fred has recently become distressed and his temperature has gone up from his normal 36.5c to 38. He has only taken a small amount of feed so far. She waits another 30 minutes to take his temp for the second time. The guidelines are that when his temp goes up to 38c and stays there for 30 minutes or more or over he needs to taken to hospital as soon as possible. She rings them and explains the problem and so he was taken back down to BRCH.

The doctors examine him and his temperature has continued to rise. His pulse is also far too high and is around the 200 BPM mark. He has not been that high for some weeks now. They give him something to try and reduce his temp, which should reduce his heart rate in due course. When I speak Rachel, and later to the hospital at 0010h, his temperature and heart rate have been dropping very gradually. They have also given him some fluids, and will continue to monitor him. Apparently he is settled a bit now and when Rachel and June left him he was asleep.

As Fred gets further into his second phase of chemotherapy problems are likely to re-surface again, and they tend to happen rapidly. Being two hours away now makes it all the more difficult. Hopefully Frederick will sort himself out. I will be called if anything else develops.

Day 52 (Mon 28 Aug)
Tue, 08/29/2006 - 00:23 — endc011
Fred stayed with us again last night and had a great time. He managed to watch television on the settee again, and was propped by his favourite pillow. He spent a lot of time examining his newly manicured nails closely, but did look about regularly to smile at either of us.

Rachel heads off to bed early and I do his medicines and feed before I go to bed. Fred gets grumpy with me, and I have a problem with a blocked NG tube. Rachel comes to the rescue and Fred settles and carries on feeding though decides not to finish his bottle tonight.
I get the NG tube problems sorted by ringing one of the nurses at the hospital. I need to make sure the tube has not moved into his lungs rather than his stomach. A bit of poking about and down the medicines go.

Another night of him chomping at his fist and the occasional sneeze reassure us he is there. There are some load "basement" noises in the dark and I think it is Fred.

Rachel heads off early to Devon and I wheel Fred down later. He has another good day and I take him into town for a wander. He is wrapped up and for half of our journey he is wide awake smiling at passers-by, and the rest he falls soundly asleep.

I speak with the doctor on=call for the weekend and he remains happy. Fred is on Day 4 of his chemotherapy Phase 1B and seems to be responding well. He may well start to suffer a bit in a day or two so we will be prepared for that.

Of the 52 days being here, the last four or five days have been the best for us all. When we came here Fred appeared the picture of health and once treatment had started he rapidly declined, developing many serious problems along the way. In the first few hours I thought that Fred may not make it as everyone was saying how seriously ill he was, and with his sudden decline in a few hours I thought the worst.

As I have said before, all of this progress does not affect the outcome, but it shows that after all that Fred can bounce back and be himself again. I have taken too many photos and video footage to join his already large archive of Fred Hours.

He will stay in the hospital tonight. His electric pressure mattress was taken away today too. It made a bit of a noise if you had your ear to it, and his old mattress returned. The mattress is cool to touch and hopefully he will settle back in that one again without too much bother.
His 1800h feed and medicine is approaching so I had better go and do those before I head off back home. Rachel and her mum June will be here tomorrow so hopefully they too can walk the town with young Frederick James.

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 51 (Sun 27 Aug)
Sun, 08/27/2006 - 23:59 — endc011
Last night the doctors said it would be OK for Fred to head back with us to our accommodation for the night which is a good step for Fred as well as us. There were a number of things that needed to be done beforehand, and provided his temperature and blood pressure were OK, he could go.

We would need to give his various drugs over the next few hours, as well as his milk feeds. We collected the milk from the 'fridge as well as the other bits that comes with it all. Fred is on 115mls now with Thixo D, a thickening additive. As we do not have any of his stuff back at the house we need to make sure we have all the basics, including nappies, cotton wool and cream for his butt.

We are also issued with a large polythene bag stuffed full of medicines, syringes of different volumes and other gidgetry. It is about the size of a supermarket bag and all looks a bit daunting. She hands us his drug chart which lists the drugs he needs in a 24h period, with the amounts and the name, plus what each one does. She asks me to explain to her what I think it all means, and when the drugs are supposed to be given. I felt this was like an on-the-spot test to see what brain power I had. I must have passed as she explained a few more things about the drugs and how to take them up into the syringe and give them to Fred. All are normally oral drugs, but these will go via his NG tube. Some are refrigerated and some are tablet form. Some could be squirted into his mouth, but a couple taste horrid, and he may spit them out. It is easier to pop them down the tube into his stomach and we know where they have gone. Fred can also keep smiling at us, or be fast asleep.

Once we know the tube is still in the stomach, off we go. Not all the drugs are given at the same time, and all are different quantities. Again it feels like a test as I prepare each one. The trick is to get them all organised before hand and read the bottle. he gets then at 0600h, 1400h, 1800h and 2200h. They consist of prophylactic anti-fungus, anti inflammatory, penicillin, vitamin supplements and other extras that he might be deficient on.

They go down his tube into his belly, and Fred is still here now, so that was OK.

We struggle off back up the hill with all of his overnight stuff. It is really nice to have him along with us. A few weeks ago we did not know when, or if, Fred was actually come back out again. He is so different now and all of the staff keep saying it. He is smiling still and looks around alot as we go past the houses. Again, it is like taking Fred home for the first time again. Instead of worrying whether I was making his feed properly for the first time, it is replaced by drugs this time.

Fred gets in and his eyes are totally round. He looks a bit spooked at first. The television is of great interest to him, as is a chrome ball which he is looking at. He gets a towel on the floor and wriggles about happily for a bit. Then he sits on the settee watching the news next to Rachel. Again he seems totally relaxed but very alert.

He gets his feeds and heads off to bed at 2200h. He stays in his boat shaped pram all night as he loves in there. Grannies crocheted blanket covers him up cosily. He does not wake or cry all night and is only a foot or two from us. I hear his snuffling and chomping during the night. Occasionally I hear his arms banging against the side. When he gets his three hourly feeds he takes along while to open his eyes during the feed. Once back down again he is asleep until the next feed.

He has a great night and we bring him back to the hospital today . Again he has a good day and we are allowed to take him into town for a couple of hours again. We go the park, and sit in the herb garden in the sun looking out for the obligatory tramps. At least one shouted out "God bless the wee Babbie...." waving his arm (in a Scottish accent) as we passed three of them on the bench. They were drinking out of 7UP bottles and seemed chirpy enough because of it.
He has his chemotherapy due at about 1730h tonight and we are told that we can take him again if his BP and temperature is OK. His BP has been going up and down wildly over the last few days and they think the cuff or machine is having difficulty with him because he so tiny. His arms are like sticks at the moment, 'though he is waving them about like a tramp at the moment.

So, Fred is in his dungarees today as he has had enough of sleep-suits for a bit. If he is heading out into town he wants a bit more style. He looks forward to his second sleepover tonight, and again hopes the doctors feel he is well enough to cruise back up the hill. Our "flat mate" won't be there tonight which is a shame as Fred likes to have visitors when he is "at home."

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 50 (Sat 26 Aug)
Sun, 08/27/2006 - 00:41 — endc011
Another good day for Fred as we found him just about to have his breakfast, sitting on the nurses lap. Rachel took over and he happily glugged his 110mls. This is due to go up to 115mls today all being well.

He is even more alert now and has found his hands. These are a source of entertainment for him and keeps him active. He no longer seems bored, and does not cry so much now. He will happily lie there and entertain himself with any toys that are within arms reach. He has managed to learn how to drop things on his head, but not how to remove them.
We speak with the doctor who was present yesterday. He is happy that Fred can go back to CLIC House overnight, provided all his obs. are OK at the end of the day. This is good news but a bit daunting really. There are a number of drugs which he will need to be given over the time he is with us, but at least we can have in our room tonight. He will also still need feeding every three hours too. Very much like a new born once again. This time it is a bit more worrying as he is a bit frail, plus the medicines need to go in at particular times. Anyway, these are little tiny steps in the right direction.

As Fred is happily dozing we head off to the Festival of Wood at Westonbirt Arboretum. It is a wood carving exhibition in the grounds of the Arboretum and we have been there before. We had planned to take Fred some months ago, and did not think we would get here this year. Shame Fred could not have accompanied us this year, but hopefully he will another time. Touch wood.

We spend three hours there, and ring in once to check all is OK, which it is. Fred is behaving back at the hospital, and is sitting by the nurses station in a pushchair.
We get back and feed him. He is very sleepy today and nods off during his 115ml feed. We re-awaken him and he starts again finishing the bottle off slowly. Now he knows it arrives regularly he feels he can take what he wants, when he wants.

We sit in the playroom with one of the other parents here, and her daughter. They share our accomodation up at the house but will not be there tonight. We had planned for Fred to have a play on the floor mat, but it will just be the three of us now. Have not yet arranged a travel cot for him but there are some in the house. We have them at home so might bring them up next time. I also plan to bring back his car seat and pram from home as it might be easier to have our own in the car ready for unexpected journeys.
Anyway, must fly now as the time for his chemo. is approaching and we need a refresher on how to do his drugs. It is all written out for us, with amounts and times but normally the staff here would do it.

Hopefully Fred will get that last-minute ticket to climb aboard his borrowed and tartan (RBS colourway) pram, and climb up the hill on uneven pavements. He will have to avoid the overhanging brambles too.

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 49 (Fri 25 Aug)
Fri, 08/25/2006 - 23:49 — endc011
Fred is beaming away to himself this morning as we arrive. Apparently he has been sitting in his little chair looking down the ward, with his neighbour occasionally waving to him.
He gets a nappy change and feed, and is much relaxed.

Fred has been smiling alot at Joanna this morning and she thinks it could be possible for Fred to have a couple of hours out on the town today, subject to her colleagues agreeing. He has reserved his smiles for everyone else except her until now and she is pleased.

At lunchtime they do the ward round and comment on how well Fred is doing. They have a good look at him and Fred is chuckling and gurgling to himself, promoting himself as the cutest around. His legs are moving alot more as are his arms. They agree that he can go out for a couple of hours in between feeds, and so we prepare his pushchair. He is bundled in and wrapped up. The staff seem pleased he is heading down town and he smiles as he passes by them.

Out in the bright sunshine we rig up a sun shade from a pillow case over his canopy as he is having difficulty operating his eyes. Once that is sorted he peers about at the world he has not seen for nearly two months. We keep away from the smoggy centre, but head to College Green and the library instead. The Green is crowded and there is an open air concert being set up. We go into the library and return my Enid Blyton books, and get out some more good reading - Enid Blyton.

We then head over to the Cathedral which is lovely and cool and quiet inside. The tranquility is broken by one of the windows being repaired which someone had smashed earlier. Fred gazes at the stain glass windows but does not make any noise. On leaving he has nodded off. Probably because of the uneven floor bumping him to sleep.

The its back up the road to the organic supermarket. Very interesting place and one that needs more investigation. It is quite pricey in one way but a lot of products from the south west are here, plus some interesting imported food. I buy a 49 tub of soured cream.

We head back as his feed is becoming due soon, and the two hours have really flown by. It was just like having a new born again as we kept checking he was OK. Plus it was not Fred's pram so it was difficult to manoeuvre. Just as much fun as a new born too and people still looked in at him smiling. He looks a bit pale in the bright sunlight, and his NG tube is a giveaway that he is not well. But who cares. i also have a close inspection of his eyes. He has two or three eye lashes now, and they serve no purpose. His blue eyes are just turning a little brown from the centre. He is very wide eyed in the lift back up.

The physio takes a look at him and is another who is pleased with his progress especially at his arm movements.

Another feed awaits him and he drops off very quickly. Rachel gives him his 1630h medicines down his NG tube, I think there were about five syringes this time.

She is knitting scarves for a coffee morning in Chagford which will be in aid of CLIC. These are "hairy" scarves, with the current one being a dark purple colour. They will be sold at the coffee morning, but the first one June made has already purchased by one of the staff here. The one Rachel is currently doing has been noted by another of the staff here and she is interested in the next few scarves too. I have considered having a go at knitting and will try it.

The doctors have also said that we might be able to take Fred back to CLIC overnight very soon. We might try that tomorrow actually. We need to find the travel cot at CLIC House too. Having Fred in the room at night will be like old times, and I do not mind if he is shouting occasionally. That means an epic journey up the hill sometime pushing Fred in his chariot.
Today has been the best day so far, and a bit of a reward for him as well as us. A change of environment will get his grey matter working over time.

We asked about the MRI results and these won't be known until after a meeting next week now. Not sure of the delays, but with the news we could go out we forgot to grumble. Anyway Fred is whacked after his marathon outing and looks a bit red eyed and grouchy toward the end of the day.

Once he is safely back in his bed a few nurses come into see him, as well a couple of the other parents. They too are pleased he went out.

Have a great weekend too you lot. We might head over to the wood carving exhibition at the Westonbirt Arboretum tomorrow if the weather is fine, and Fred allows us. Sadly Fred won't be able to come with us, but he can stay with us in the evening possibly.