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.