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.