Day 136 (Mon 20 Nov)
Tue, 11/21/2006 - 04:50 — endc011
I rang Rachel first thing this morning and he had had a good night. As he must have been exhausted he slept from 1900h through to 0300h when Rach fed him, or changed his nappy. He then slept until 0700h. I think Rachel caught up on her sleep a bit too. I was worried when I drove off, as you never know whether Fred would deteriorate, but there was not any indication of that.

They decided that the cannula in his foot should come out, as it was becoming a pain to give him his meds and take his blood. They took it out and re-inserted another in his other foot for the time being. needless to say, Fred was very distressed about this unexpected probing, but coped with it well. When completed, he sucked on his dummy and had some Calpol which calmed him rapidly.

When they are doing these procedures you like to assist and hold him down to comfort him. He manages to throw a smile in occasionally then gets bawling again. He also tends to look you in the eye occasionally which makes it worse.

I am told that they will put his Hickman back in on Thursday too. This is good news as if he is well enough for a GA, then he is improving.

His temperature has stayed level around 37.5c all day, and they took the dressing off the old Hickman site today and it looked inflamed but OK. Rachel did not think there was any great concern at the moment but they have changed the antibiotics.

As his counts improve, his resistance to infection will increase which means his body can have a go at dealing with the infection as well. At the moment he has no such defences, hence him catching the bug in the first place.

Some good news is that a match has been found for Fred. A UK male, though we are not singing and dancing yet. there are many factors in bone marrow transplant and one is whether the match is A) still alive, B) at the address registered C) is willing to donate and D) medically able. He had agreed but a date has not yet been agreed. With Fred's recent complications this will delay thing a while.

However, a match is no way a "cure" by any means. Fred could very easily reject the marrow donated, and this is sadly a great possibility. It is a trial and error basis really, but it should go ahead if all is well. We have no idea when. We have not yet met with the team but will later this week, or next week. This will really be our introduction to bone marrow transferation (?) so we are about to learn new things.

Fred will, once his counts have come back after the last lot of chemotherapy have his own marrow in optimum condition (hopefully). They will harvest this and save it for a rainy day as a rescue marrow should things go wrong. That will bide him time for a another donor if necessary.

After that Fred will have an eight day course of strong chemotherapy to kill off all his own bone marrow. He will be very vulnerable to all sorts of complications and I suppose this is the most risky so far, as we are now meddling with his own natural composition. Once it has gone, it has gone, but for the rescue marrow in reserve.

Once the chemotherapy has finished the donor will be at the hospital to donate and Fred will get it via his Hickman line over a period of time.

Then it will. I do not know much more so I will keep you all posted.

The Anthony Nolan Trust said that when people hear that a match has been found a number of people will withdraw from donating at the Torquay session. I hope that does not happen because it will affect so many other people, and Fred could very well need more bone marrow in the future. If Fred could speak he would ask that everyone who is contemplating donating, please continue to do so. Whoever the current donor is, sometime ago they chose to offer their marrow for someone and Fred is lucky to be able to receive that chance. Without it Fred would still be waiting.

On the news recently there have been two South West appeals for marrow. One is Yvette Gate, who has been searching for four years or more. Her mother has in the last few days travelled to Gambia to get blood samples from distant relatives. Another, Savanna, is at the moment travelling from Cornwall/Plymouth to the same hospital as Fred in a search for a marrow donor.
Today starts Anthony Nolan Week. Having regard to the above tale a look at the link on my home page, or, in Yvette Gates situation look at her website, which follows. It shows anyone can be affected by this disease, so please trot down to donate marrow.
www.yvettegate.co.uk

Day 135 (Sun 19 Nov)
Mon, 11/20/2006 - 07:01 — endc011
Fred was a little upset again from the late evening, and the doctor came back a couple of times to take his blood from somewhere other than his cannula. Luckily each time he was fast asleep. She asked to be paged when he was awake.

When he did wake for his blood letting session, she had been called to A & E on Level 3, and would be detained for some time. When she came back after being paged he had fallen asleep once again, so she decided not to to wake him and said she would come back early tomorrow for another go.

Jamie, the nurse in charge that night, decided to have a last ditch attempt whilst he had same some spare time. He wanted to spare Fred the pain of needles in his feet or head and so we both manipulated his little fat foot, under my torchlight, (to keep him sleepy and not switch on the main light) and managed to extract the required amount. Only 2-3 mls but enough for the lab and Fred smiled through most of it, occasionally. Fred i think would be grateful and both Jamie and I were chuffed that Fred had avoided needles.

The night passed by without too much waking, but I changed him a few times and fed him at 0530h. At 0700h I gave him his meds, and slept until nearly 0900h when Rachel came in and woke me.

In the early hours as it is getting light Fred has now latched on to rolling to his side and trying to catch my attention. I pretend to be asleep and he will look at me intently from his bed, through the bars. I watch him with one eye. I might squint at him and say "hello Fred" and try to go back to sleep, but he will become more animated and eager. He has now started to hold his dummy and tap repeatedly on the bars until I wake. He has been doing this the last day or two. Tap, tap, tap until I get up. When I settle him, he starts again. He has succeeded in discovering a slightly irritating noise which he likes enormously.

I had a lie-in, and so Fred joined me for a bit, with both of us squished up in the fold down bed. All rather cosy, and he enjoyed it too. His temperature rose to 38.8 so had to be placed back on the bed to chill.

He had some some more GCSF via his foot and slept on and off.

Lunchtime was a Cup-a Soup with bread and we watched the TV.

By mid afternoon I decided I would head back to home for a bit. Just before I did, Fred was sick alot. He perked up again and after making sure he was OK headed back. He managed to splash my coat and trousers a little.

I rang the ward as I reached Torbay and I learnt he had been ill again, though was still chirpy, though very sleepy.

He settled later in the evening and Rachel said he was trying to get some sleep. All was well there and she was getting ready for bed too.

I do not know how the infection is progressing and hope the antibiotics will start to work very soon. I looked today and it has tracked higher up his chest (following the route of the old line under the skin) in the form of a gradual red inflammation.. The doctor said that if it looked infected with pus, they may need to drain it. Pus will only appear once he has neutrophils to fight infection as pus is a by-product of the body doing it job. At the moment he has nothing to do that, therefore no pus.... but the infection is still there of course raging away.
He has had this infection for over a week now and needs to concentrate on gathering his strength. His last weigh-in last night was 7.9kg. Needs to be over 8kg+ to meet the 25th centile in the Red Book.

Due to his his temperatures and sickness he will have lost vital fluids, and some weight and so they will review him on Monday.

Not much more to say really, other than his infection is holding on, and his old line site seems to be gathering an infection rather than getting rid of it. I had hoped it would have stayed in the tube, but it looked liked it escaped on the way out? Hopefully the antibiotics, and his increasing blood count will enable him to get rid of the infection.

Day 134 (Sat 18 Nov)
Sun, 11/19/2006 - 02:34 — endc011
I get a call from Rachel in the morning that Fred had been up most of the night, calling out and crying, and generally being very restless. His temperature had been going up and down too.
All this nocturnal activity by Fred means you do not sleep at all really, or at least you cannot remember sleeping. By the time you do, it is time to start the day again.
When I get in Rachel is looking tired and Fred is not.

I give him a tickle and we have a look at him in the light. He has a dressing over his wound where they took the Hickman out and it has not oozed anymore. i took a photograph of it yesterday to be able to compare the site but all looked the same. However, there was some additional reddening of the skin visible and this was new over night.

We spoke to the nurse and doctor and it looks like the path of the old tube under the skin may be infected. We will watch it, but he is on antibiotics anyway.

They have to use the narrower bore cannula in his foot for fluids and drugs and this is a bit slower. When he gets certain drugs it obviously stings him as he cries. Before, it would disappear deep don into his chest. It is also noticed that when the fluid is pushed through, the entry point in the skin is leaking slightly. We jiggle it about and sometimes it works, sometimes it is leaky. Only a little but, but it should not leak.

There is some discussion that the cannula will need to come out again, and another put in, in the other foot. No GA this time but like before with a little local anaesthetic. Fred has crummy veins because he is so small and it will be a difficult effort. It is mentioned that a vein on his head could be used instead as a cannula site....

Fred is generally OK with himself all day and Rachel goes into town for a well earned break. It is crowded with shoppers and everything takes a lot longer.

She comes back and we sit with Fred who is cooing and gurgling and singing.

His teeth are progressing and I can see the flat tops of them fully now.

Rachel heads off as I am staying tonight and it would be nice for her to get some kip back at the flat.

She heads off so it is just Fred and I. He falls asleep and I fall asleep in the new chair.
One of the doctors is circling to get some blood off Fred. Unfortunately the cannula in the foot did not let the nurse take anything out this morning and we need to have a blood sample today. All they need is 1ml, but that will be difficult I know.

He was asleep earlier, and I have popped out to get this done.

Day 133 (Fri 17 Nov)
Sat, 11/18/2006 - 00:04 — endc011
Fred was not too happy until about 1900h last evening, and then seemed to calm down.
He had his meds and had continued to tolerate his feed as well. I am sure that in its itself makes him feel a bit happier.

He had another dose of the GCSF which will give him a kick start we hope.
He then was really calm and his temperature bobbed around a bit and went down to 35.9c for a hour or two. I gave him a couple of layers of blankets for that and he slept well most of the night.

He was NBM from 0500h onwards so he had his last milk at 0430h, finishing just before 0500h. He also had his last 0700h meds a bit later with some Calpol to tide him over.

They use the opportunity to make use of the line for the last time by giving him a blood transfusion at 0600h. This is followed by a cocktail of drugs in the line. After this I speak with Jo who says that his clotting is not quite correct. In view of that, to be on the safe side she will arrange for some FFP (fresh frozen plasma) and platelets into him before theatre.

The anaesthetist came in to see Fred and he has dealt with him a few times before. The Hickman line will come out under GA as planned. He will have a little stitch mark where they take it out, and hopefully the bugs will go in the bin with the tube.

He discussed the temporary central line, which would either go in a cannula in the back of his hand or foot. Infants veins are a bit thread-like and it can be difficult as we have seen. The alternative could a central line going into his groin. He has had two there before, but because they are in the "nappy zone" there is a higher risk of infection.

They will decide in theatre. I also asked that they change his current NG tube as it is splitting and has been in for a while too.

At 1100h I am on the 'phone to Karen Archer of the Anthony Nolan Trust having a chat. I am mindful of the time, and nip back along the corridors to the ward. Luckily I bump into them going to theatres on Level 4. He is still hooked up to a couple of pumps but seems oblivious of course.

Rachel sees him into the theatre and I wait outside. She comes out and we go off to the room to have a coffee.

A short while later we are called and we go down to pick him up. He is in an adults high sided trolley this time and looks a bit lost in it. A bit grumpy but aware of those around him. And hungry too.

He gets a feed and falls asleep for an hour or two, waking occasionally.

Then he seems to have perked up a bit, and is laughing and chuckling to himself, and examining the labels on his toys. that is the latest thing - labels.

We are "locked down" in our room at the moment because of the potential bugs.
There is the regular curry night tonight but I am up at the flat and Rachel will be with Fred tonight.

He seems to happy at the moment, and fingers crossed his temperature is steadying now. He is more himself.

Day 132 (Thu 16 Nov)
Fri, 11/17/2006 - 04:36 — endc011
Fred was distressed most of last night as his temperature went up and down. He peaked at 39.2c and this meant he was awake all of the night really, making his gurgling and crying sounds.
It is difficult to pacify him when he is like this but it does mean that you have to get up every few minutes and cannot really sleep. He gets Calpol which calms him but this does not always work.

His general well-being is improving slowly but the infection is still there and not going away.
After a couple of nights Rachel is exhausted, as it also very worrying to see Fred cooking to a crisp quietly.

He is due to have his MRI on Friday morning which is quicker than we thought.

They will get the results of yesterdays GFR test, to see how his kidneys are working.

In order to try and get him fighting infection himself they will give him his GCSF (see glossary) which should help him grow more neutrophils to fight the infection from within. It worked really quickly last time and hopefully will again.

When I get back to Bristol I hear that Fred has been encountering problems with the infection. They have identified the type and what it is. It is a common one, but a nasty one. It seems to live in the line and can cause no end of problems. They have cancelled the MRI and have decided to remove his Hickman line in theatre. In theory the bugs should go in the bin with the line, but some may remain in the blood. They will then give his a course of antibiotics to deal with this if necessary.

As the line will be out for a week or two, he will have cannulas in his hand, where they can continue to administer his normal IV drugs. Not ideal but better than an infection.

They could wait and see if Fred will get rid of the bug himself and leave the old Hickman in, but it takes time. Furthermore it increases the chance of it coming back later.

At the moment he is quite chirpy. Changed his bum and fed him. He has settled and is playing with his toys. I bought him a wooden rattle from the shop in Crossways and he liked that. He has started gnawing at it.

So, tomorrow is a big day for him. We are also meeting some other people we have not yet met, who deal with bone marrow transplants. We have not yet looked at the BMT Ward which is upstairs. Then it will be the weekend again.

Fingers crossed again for our little bundle of pudge...

Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:34 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.
He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR (glomerular filtration rate) earlier. This is where he is given a radioactive isotope into the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.

He continues to have fluids put into him and he has not really been sick since Rach started the little and often method.

His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickman line. On the tube are lumen, or little ports, where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.

It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.

This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. This is called "barrier nursing".

Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.

If this is the case my wanderings around the hospital will be severely curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with just a few words. She can be my ghost writer. If it is blank then I, or Claire, did not get a chance to post anything.
I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. There are some posters on their way too, which might be similar.

Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.

Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:08 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.

He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR earlier. This is where he is given a radioactive isotope in the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.

He continues to have fluids put into him and he has not really been sick since rach started the little and often method.

His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickma line. On the tube are lumen, or little ports where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.

It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.

This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.

If this is the case my wanderings around the hospital will be curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with a few words. She can be my ghost writer.

I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. there are some posters on their way too, which might be similar.

Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.

Day 130 (Tue 14 Nov)
Wed, 11/15/2006 - 01:34 — endc011
Last night was a long one in that Fred was very very unsettled due to his high temperature. No matter what they did, his temperature went up and down slowly. Just when you thought the problem was going away his temp would be 39.5c which is just over 103c.

It is not good for Fred and he would then fly into a frustrated rage. He would then drift off to sleep.

He has been quite settled for sometime now and not knowing where the infection is coming from means they cannot be too specific with anti-biotics. It might not even be something anti-b's can deal with, so is a worry.

He felt like a loaf of bread just out of the oven sometimes which was the most worrying, and how long he could sustain being that hot. I guess it was because the room, and I were colder than him.

During one of his bigger screams (when his face goes purple and his mouth just stays open without anything coming out...) I spied the root of the problem possibly.

Lurking on his bottom gum was a pair of little tooth pegs popping through. That immediately made me feel better as I now had some understanding as to why he was so enraged and upset. He has a fever too, but teething will exacerbate it, and will make him mightily miserable.

When I later told my mum and dad later, dad was chuffed to have reckoned this was what was wrong yesterday when they visited. I had given up looking as I thought it would be some time yet due to his treatment. Anyway, little teeth will mean he will start gnawing on things. He has a teething ring which goes in the fridge which he has just played with until now, so we can get that one chilled.

He does not have any neutrophils to fight infection at the moment, so is liable to infection. i think there is a chance he might have a source of infection here, and this might help them deal with it quicker.

He suddenly relaxes too, and sleeps for a few hours, but is sick a couple of times. Poor little Fred.

I nod off at just after four as I am worrying about him and his temperature, but it is dropping slowly.

By the morning he is quite calm, but still really hot. He looks very sad for himself, and is not our Fred. No great shouts, which is a bit worrying. He does manage a smile though occasionally.
He perks up a bit whilst I am preparing to head back once Rachel and June arrive. None of the staff are overly concerned at his temperature behaviour, so I reckon things are OK. If there were problems then we would know.

As I am leaving Kate (ward sister) gets a 'phone call from a member of the public who has read an article in the paper and wants to know about donating bone marrow. How he got through to the ward I do not know, but he is given Anthony Nolan Trusts details.

Rachel and June arrive and spend the day looking after Fred. It sounds like he is the same really, bobbing up and down, but is being looked after. He appreciates this and manages a few smiles.

The doctors, like Rachel and I, are concerned that he does not dehydrate, so he is put on a drip to replace that. Rachel has manage to feed him in small amounts so he retains all of it today, which is far better than I did. Little and often is the key by the look of it.

His weight has dropped a bit which is a disappointment, but he is chirpy.

Rachel and June have rustled up some gloves and shoes for him to keep his extremities warm. They are like ice, with his back and head roasting.

When I speak with Rachel I can hear him chattering in the background with the fan on in the room. He seems quite happy now, and the doctors seem pleased with him so far.

I hope Rachel and Fred have a good night and that he will sleep better. With a better food pattern today, the new blood he had, plus the fluids, I hope this will give him a bit of a kick start into getting better.

I spoke with a few people today about Fred's appearance in the paper. Abi my hair dresser was a the new stand when a couple in front commented on the paper and Fred's picture to her which was nice. Dawn was on checkout in Sainsburys and a few customers commented on him as they passed through the tills.

Perhaps it was Fred's ears burning yesterday?

Day 129 (Mon 13 Nov)
Tue, 11/14/2006 - 01:38 — endc011
Fred was still hot over night but slept well.

Today his temperature went up and down and he was happy for the most of it. He can have only a limited amount of paracetamol before he uses up his credits. He feels really hot at times and the thermometer shows him bob from 36c to 39c.

He is in his nappy all day and sits in his baby bouncer watching the world from his door way. he will nod off, then awaken feeling rather grotty.

My mum and dad visit and he behaves well. I think he is pleased to see then though and raises a few smiles before feeling a bit glum.

He has had his bloods checked and they will do other tests. Nothing back yet though and some take a few days.

He has run out of nappies and I get some plus some wipes as I am changing them far more often now. there is a hint of nappy rash brewing though it comes and goes without careful bum wiping and washing. No gripes from Fred.

He was sick earlier after a might bawling session. Afterwards he looked very relaxed and smiley. Hopefully we will be able to keep the temp under control. Fred has had a good run so far and these things are expected. His MRI scan was cancelled today as he was not well enough and needs a blood transfusion. Just waiting for the blood to arrive.

Today Fred has appeared in the Herald Express and the Western Morning News, in relation to a bone marrow donation session my employer is orgaininsing on the 13 December 2006. The following are links to the articles. I amnot "pointing" at Fred, merely scratching his chop when Claire took the photograph. There is a marked difference between the "before" picture and the one taken recently. Fred's hair has disappeared and has been replaced by an almost blonde fluff.

The Herald Link is (cut and paste possibly:
http://www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=134822&command=displayContent&sourceNode=200313&home=yes&more_nodeId1=134831&contentPK=15933054

The Western Morning News link is:
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=143632&command=displayContent&sourceNode=142719&contentPK=15935497&folderPk=91672&pNodeId=201752

Hopefully those links will work.

I can hear Fred down the corridor so had better go and see what he is up to.


Day 128 (Sun 12 Nov)
Mon, 11/13/2006 - 05:35 — endc011
We had Fred stay overnight with us and he seemed to enjoy it.
We headed down to the hospital and Fred was placed back in his trusty bed. He had his bloods taken and we decided that we would have something to eat in the canteen as we had no need to go out.

Fred was OK to go out with but he was sleepy and so was I.

His platelet count was low so he had a transfusion of that in the afternoon. He is neutropenic once again and is at risk of infection.

True to form his temperature starts to rise in the afternoon and by 1900h it is just over 38c. He gets some paracetamol and the doctor is bleeped. She organises some antibiotics for the little chap and heads off. Fred is grumpy from then on, and his temp bobs up and down. He is very tired but does not want to sleep.

At the time of typing he has just nodded off but he is not interested in food.

At 0500h Monday morning he will be nil by mouth for at least six hours so I will try and get his feed in by 0430h. If he does not play ball then he has a long time on an empty stomach.

He will have a general anaesthetic for the MRI scan which is due at 1115h over in the BRI.
Rachel is away tonight and tomorrow night, and will be back with her mum June on Tuesday morning.

It is normally nice and quiet in the hospital and if Fred is a bit a dodgy then it is better to be here than up the road.