Day 18
Tue, 07/25/2006 - 19:11
Overcast today, but warming up.

Fred has not had a good night and has been sick. He is off his feeds too, and his temperature has been climbing. There are also some marks on his feet which are an indicator of something though they do not know what. Fred is certainly not right and this causes some activity and delays his normal chemotherapy regime.

He settles down and we pop out for a bit. June and Sandra are here today. Dawn and Emily also arrive which is good. We have some lunch and come back. Fred is not in his room, but is in the play room with Sam the Play Therapist, or "play girl" as I call her. Fred is lying on a mat, watching Mr Men on TV. He seems happy and Sam has given him a cuddle. Fred has also smiled at her which is nice.

The physio is also taking a look at Fred as he has a habit of lying in one favoured position. She suggests some different positions which he seems happy with and falls asleep quickly.
Later he takes a turn for the worst as his temp. is now 39.5. The doctors are concerned at his current condition and the infection is taking hold. Fred heart beat wavers around 170 but goes up to over 190 regularly. He is also having circulation problems, with his arms and legs being cold. This is another thing we can do without.

Day 17
Mon, 07/24/2006 - 19:03
Once again a scorcher as we walk down to the hospital. Today we get swipe cards to get into the ward which is much more convenient.

Fred has a good night but is nil by mouth so is very hungry and grumpier by the hour. He is sucking clumsily on his dummy as he has forgotten how to use it, as well as forgetton how to use a bottle. The Speech Therapist is due to visit him one of these days once he is settled to see what they can do.

His WBC is now around 0.33 and will continue to drop slowly. He does not have any nuetrophylles which means he has no immunity. His bum is worse then ever now despite our efforts.

FRED SMILES FOR THE FIRST TIME IN A FEW WEEKS!

Sadly this is short lived as his slot has come up in theatre and he will be having his Hickman line put in. Rachel goes with him down to the anaesthetic room. While he is in there we go into town for some lunch.

We get a call from the nurse to say he is back and has done well. Unfortunately only one line was taken out from his leg but the Hickman is in. This means the other line will be removed manually on the ward without anaesthetic. When we arrive he is in a pushchair all swaddled up and crying loudly.

He nods off for a while and seems settled.

We head home earlier tonight as he needs his kip.

Day 16
Sun, 07/23/2006 - 18:51
It rained overnight so it was much cooler in the morning.

The Herald Express has started to arrive - as arranged by Wayne and Claire - and we read the antics of Torbay. One of the doctors here was at Torbay for a few years and had been reading all about the parking attendants and the palm trees. We correct her on the latter.
There is some broken skin on his bum but we continue to apply various creams. He is weeing well and is off pain relief for the moment. He gets a quick wash too.

There is talk that he will have his Hickman Line put in the next day or two. This will be a permanent port for taking out and putting in fluids. It is inserted in theatre through the neck and down to the heart. It is then looped and tunnelled under the skin where it appears as a tube on his right hand chest. This will mean the other two lines to each leg will go, thus reducing infection sites.

I sign another set of consent forms. We are building up a folder of these miserable documents. They expalin the procedure and the reasons why. They also cover all the likely side effects which with any complex medical procedure can be rather frightening.

We manage to clip his nails today for the first time in three weeks.

Fred is OK in himself and seems to be holding his own. Again he looks absolutely worn out and a bit sad today.

Day 15
Sat, 07/22/2006 - 18:47
Weather is getting cooler now I hope.

Fred is quite grumpy today. They will be weaning him off his diuretics today by 50% today and he should be off them totally tomorrow. His nappy rash has become really serious now and we apply various creams and potions. This will become a risk of infection soon.

Fred actually starts to catch up on his sleep which is good for him and us. He keeps quiet for most of the day and we head home earlier than normal.

We have got back into the habit of cooking our own food now in the evenings which is nice.

Cannot keep eating pasties or sandwhiches and the cost is too much.

Day 14
Fri, 07/21/2006 - 18:39
Today is my brothers birthday so I give him a ring. Nothing much happening in Paignton.
We go in to find out that Fred had another seizure after we had gone but all seemed settled now. There are a number of reasons for the seizures, including too many electrolytes, sludge in the brain, reaction to drugs. They contact Great Ormond Street Hospital with some of his previous results and again they suggest some further tests.

He will have his CT scane later. However, he is felt to be well enough at the moment to go up to Ward 34 Oncology. He should have gone last week but he was too unwell with his complications.
He has not slept for over 24 hours now being distressed. His bum is getting really sore now and this is causing him some trouble.

He has his CT scan. The next bit of news throws us once again. There are a couple of small abnormal shadows on his brain which suggest some time in the past a minor stroke or similar. This could have been a long time ago, or recently given the sludgey nature of his blood. It could also be like a clot. However, he is not displaying any tell-tale signs yet but they will look at this later on in more detail.

He gets on to Ward 34 where the nuerologist looks at his scans and what actually happened. It may be that these were not proper fits, but something else and he keeps an open mind but does not seem too concerned at moment.

Day 13
Thu, 07/20/2006 - 18:34
Fred is a lot more alert when we come in and Fred has had another big poo. This means things are moving again down below.

June, Colin and Gaye travel up in the heat and thats a nice change for us all. Again we march over to the Commercial Rooms in Corn Street for some lunch. Its usually not crowded, non smoking and air conditioned in there, and the food is cheap. Real ale is £1.00 a pint at the moment.

Later in the day he is checked over by the cardiologist with an "echo" and this is all fine. His heart is normal as some of the drugs can enlarge the heart. Seconds after he has gone, Fred seems to have a couple of brief seizures which is distressing to say the least. The doctors have a look and all seems OK. They later suggest it could be due to a reaction to drugs or to his balance of chemistry. Either way he will have a CT scan tomorrow to check his brain. This is another thing to worry about.....

Day 12
Thu, 07/20/2006 - 01:56
Very hot in the morning as we walk down. See several of the doctors all trooping in.
Fred seems more alert now. Swelling has gone down and he has had his first poo in two weeks! Nice and clean now though.

Amanda and Heather appeared with gifts followed by Wayne and Claire again. We had some flowers from the office plus a lovely card signed by loads of people. The messages meant alot to me and Rachel. There was also an octopus that was musical which was appreciated too. We had other gifts given to us, plus a few of my noodles from my drawer at work. It was nice to have a crowd for Fred. We go off for lunch at Wetherspoons. On our return we are greeted by nurse Hayley who is proud to announce he is off the ventilator. This is a big moment really for him, as this is a source of possible infection.

Later in the day the haemofiltration is disconnected and Fred is getting ready to move to another more isolated cubicle. He still has a temperature though, but this bobs up and down.

Day 11
Wed, 07/19/2006 - 01:50
The weather is hot again.

Fred has had a good night according to Natalie. He is now a little "dry" - in negative fluid-wise - and is given some more fluids. His arms and legs are no longer as swollen as they were. His feet are still quite round though.

As everything seemed OK I caught the train home for the day to sort a number of mini crises. Did some work on the train with my PDA which is proving a real lifesaver away from home.
It was difficult walking down our road on the usual route I took Fred with his pram. On going in, the cat was not there anymore, and all Freds stuff was neatly placed in his room. His cot and moses basket sat there as we left them on the 8 July. Thats seems a long time ago. Opening the airing cupboard all of his clothes are neatly stacked, ironed for wearing.

Saw mum and dad and popped into see Claire as I usually do. Had a quick chat and dad gave me a lift to the railway station in the afternoon.

On getting back Fred had had a good day by all accounts and June and Jean had visited. He may be off the haemofilter tomorrow with any luck and could be heading for Ward 34 - Oncology.

Day 10
Tue, 07/18/2006 - 01:43
Mum and dad visit on the train and enjoy sitting looking at Fred. It is difficult for any visitor as Fred does not entertain very much. At times he looks really unhappy and sad which makes it hard for us. We are used to all of these devices attached to him, but it must be strange for visitors to see him totally different to what he looked like when they saw a couple of weeks ago.
Frances also visits in the afternoon, and she thinks Freds appearance has improved since then. She brings along a few bits and bobs for us which is nice.

His WBC is now 11.2. The haemofilter is working happily and Fred is urinating well through his catheter with a diuretic. He is basically having 200ml put in, and 260ml taken out over a period of time.

Today has been another unusual one in that nothing much seems to happening, but his stats. are going a little backwards. His daily onslaught of chemo. and medicines continue unabated, and Fred seems to be getting quieter.

Day 9
Mon, 07/17/2006 - 00:38
Frdd looks a bit better today, and his WBC is 55. I hope that it is not dropping too fast now.
The Professor is pushing for Fred to go on the haemofilter now as soon as possible. He is determined that it starts by 1300h if possible. The sense of urgency is a bit worrying but at least he gets things moving. Another problem appears in that they cannot get the right blood for him. There is a delay of 4 or 5 hours whilst they track it down. It eventually arrives.
Freds stomach is starting to swell a bit and this is causing some concern as well. He is not as responsive as before and his chemistry is all over the place. There seems to be some concern about the tumourlysis, although I thought with the low WBC this had passed. Obviously not. He is not feeding either, so they have started doing other things to keep him going.

They decide to give a drug that will paralyse him. This means literally he cannot move. Also he will not be able to breathe for himself and the ventilator will do that for him. It does mean that Fred can rest and let the machinery do it for him.

Fred has some more blood and plasma during this time plus a concoction of other drugs.
We will have to wait and see....

Day 8
Sun, 07/16/2006 - 00:33
We decide that today will be the day we come back home quickly. Fred seems settled from his op. yesterday and so we take a gamble. We chatted with Natalie, his nurse, and she says to ring in as much as we want to on the way to and fro.

We head home and when we come back I see that all of Peanuts belongings have been cleared. He is not there to greet us as he has done for a couple of years. I get the cahnce to do a few things but mainly to bring some clothes and food back with us. I visit mum and dads briefly, and pay a visit to Dawn who is at home.

Freds WBC is 152 today so heading in the right direction. He is still very soggy and they are discussing what is needed next. It looks like haemofiltration will be needed after all. This is a form of dialysis and takes the blood out of the body, filters it to remove whatever you want, and puts it back. he should be on it for three days or so hopefully. Again, another source of complications.

Day 7
Fri, 07/14/2006 - 18:44
Weather is bright but over cast.

Freds been moved to another cubicle because he is becoming at risk from infection. Not much different today other than he has more tests and treatment.

He goes off to theatre to have his lumbar puncture and chemo.

The Professor seems pleased with his progress so far although this is only the "induction" phase. His WBC is 450 which is thelowest so far. However, he is still retaining too much fluid, and this is making him "soggy" and his lungs are getting wetter. His breathing is getting more laboured and I ask how much extra fuid he is holding onto. I am told about 1.5 to 2 litres! Thats 1.5 plus kg in weight.

He has been on a ventilator since admission and has had line inserted in both thighs so as to administer drugs. He also has a naso-gastric tube for feeding and other "oral" drugs. Some of these could be removed soon, once we get the fluids down. He is weeing OK through the catheter, and is on diuretics to help him. However, the rate going out, does not relate to what is going in fluid-wise. His WBC is now 300.

His lumbar puncture results suggests the cancer has not yet spread to the spine or brain but the chemo. they have given will help keep it at bay hopefully. They will do another lumbar puncture in a fortnight.

She confirms that Fred will need a Bone Marrow Transplant (BMT) at some time, fairly soon.

Day 6
Thu, 07/13/2006 - 18:37
Weather is dull and cool.

Freds WBC is 748 and he is having problems with his blood clotting. They do not want him to go down to theatre with these problems so he is taken off the list and so we must wait.

Les called me on my mobile and lefft a message. I will call him later once we have had a chance to speak with the doctors and we do not seem to be making much progress.

We meet with the CLIC Social Worker who is very good. Cylla explains a number os things about rights and benefits, and how CLIC works. She goes off to get us some more information about A.L.L.

Fred is a bit more active at the moment, although he very dopey compared to normal. He must be feeling really really rotten with all the stuff that is going into him every few hours. He has been getting blood transfusions as well as plasma, and this temporarily stabilises his body chemicals. However, the next few tests show a marked swing the wrong way in some of them.
Freds heart rate also is becoming more erratic now as the treatments take effect.

All of this is so much of a worry for us. Fred seems to be coping with it, though he does not have much choice.

Day 5
Wed, 07/12/2006 - 18:33
I did not have a good night last night. On the way in post a letter to work letting them know that we will be here for some considerable time.

He has a good night, and today we have a Student Nurse with Fred also.

Another day of tests and watching Fred come and go in awareness. He has not cried for a few days which is unusual. Wayne and Claire visit us. We head off to a pub for some lunch which makes for a change of scenery.

Day 4
Tue, 07/11/2006 - 18:26
Another good night for Fred. The weather is getting hotter again.

Freds WBC is down to 600 but he has a long way to go.

They have started the chemo. now and this has side effects. Fred is weeing OK still, but he is gaining fluid at a greater rate than he is getting rid of. This has its own problems.

Fluids are needed to keep the kidneys and liver working efficiently. As the chemo. destroys the white blood cells, the content inside those cells are released into the body. This can cause serious problems with the major organs and so has to be controlled. Basically all the bodys chemical balance goes haywire and Fred is at risk of things like renal or heart failure.

He is getting some SMA Gold today which is a step in the right direction, and this is gradually increased over the day.

June and Sandra are visiting today which means we give Fred and wash and brush up, although he is looking a bit puffy and poorly. Lots of tubes and drugs are taking a toll on his little podgy body. Fred opens his eyes for the first time today which is a little milestone. They are not happy eyes, but they do look at us for a moment or two.

His WBC has gone back up to 720 which is disappointing. The doctors discuss Fred going to theatre tomorrow for a lumbar puncture and a dose of spinal chemo.

Day 3
Mon, 07/10/2006 - 18:19
Fred has had a good night according to his nurse which is settling. He is continuing to have tests although his WBC is not going down. Thats not unusual but they need to get the WBC down really. He is having steroids at the moment and they are considering starting him earlier on chemotherapy.

We meet with Michelle and Michaela who sit down and explain what A.L.L. is all about and some idea of the treatment Fred will be having. Apparently there are only 400 cases of childhood leukaemia each year in children and A.L.L is the most common. There are three categories as to treatment - Low, Medium and High. It is suspected Fred is in the latter because of his very young age, and the very high count. A further test confirms that there is also another reason which was to be expected.

We move our stuff upto CLIC House, some 15 minutes walk away from the hospital. It is a self contained unit, which we share with another girl and her daughter. My brother Duncan is passing Bristol so pops in to see us which is nice.

Fred seems sleepy but generally OK.

Day 2
Sun, 07/09/2006 - 18:18
Its raining and grey today. Our accommodation consists of a ferry cabin sized room with an en-suite toilet, plus a steel bunk bed. It does its job and we are very grateful.
Freds WBC is now at 768 which is an improvement. Mum and Dad visit with Duncan and this is good.

Doctors continue to do tests on Fred and not much changes. We are meeting a lot of them now and they all comment on Freds unusually high WBC. We are given some literature about his disease, A.L.L, and this gives us a bit more information.
The other children in the ICU all look sick too. The little girl (a few months old too) in the bed next to Fred has been receiving visitors all day, and something is obviously wrong. I saw the Hospital Chaplain in with them earlier and later find out that sadly the little girl did not make it.

Day 1
Sat, 07/08/2006 - 18:30
After leaving Torbay Hospital we headed home literally in a daze at what we had just be told about Freds condition. I would liken it to be crossing the road, in your own little world, and stepping out in front of a car without thinking. In a split second before the car hits you, you get that horrible rush of adrenalin. After thats its all chaos in your head, although everything is really quiet.

We did not have a clue that Fred was so seriously ill, and he really seemed very normal. Luckily my brother Duncan came over to assist with sorting the house as expected to be away for some considerable time. After getting a few things together we headed off in to the rising sun to Bristol.

Freds first day involved him being assessed by doctors and staff. This was all new to us and he was gradually being connected to tubes and monitors, and they started to introduce various drugs to make him comfortable. Fred was slowly becoming less of himself which was very difficult at this point. A feew hours earlier he had been normal.

We were given accommodation in the hospital for a day or two which helped alot. More doctors came and went, and things were explained to us, but it was difficult to retain all this information. It had happened so rapidly that it was difficult to catch up with what was happening.
Frances managed to get across in the afternoon and it was a nice break from the hospital environment to have a coffee in Debenhams. I think my mum and dad are coming tomorrow.
They were keen to start treatment, but needed to do a few tests first.

IntroductionFri, 07/07/2006 - 23:31 — endc011
Fred became unwell on the Thursday and we took him to the doctors for a second time on Friday 7th July 2006. The doctor was not really sure what was up with him and so she decided to refer him to A and E at Torbay Hospital just for a check up.

We went in at 1900h that evening, and were seen immediately by doctors as they were expecting him. They conducted various tests, mainly with his blood, and at 0100h on the Saturday (8th) a consultant came in and sat down with us.

We did not have one inkling as to what was to come next as we thought Fred had a stomach bug or something like that. We were told that Fred had Leukaemia and that his condition was all very serious. He went on to say that they had been discussing Fred with another hospital and that he was to be transferred to the Bristol Royal Hospital for Children in the next few hours. He explained very briefly what will happen but told us that our lives would be turned upside down for the next few months at least.

A Retrieval Team from Bristol arrived by ambulance a couple of hours later. The four of them took just over an hour transfering all his tubes over and Fred was whizzed off, with us following a short while later. We got here about 0630h that morning after not having any sleep at all obviously. He had been booked in and was in the Paediatric Intensive Care Unit, lying in bed.
Fred has been diagnosed with Acute Lymphoblastic Leukaemia, or A.L.L. for short. A relatively common childhood cancer it generally appears from 2 or 3 onwards. Basically something has gone wrong in his bone marrow, causing the production of many white blood cells that are immature and cause him problems. To treat leukaemia, those cells need to be killed off with chemotherapy, so that they are at zero. Normally the good white blood cells fight infection so this means when all the white cells have been destroyed, he has no immunity to infection. If the white blood cells die too quickly they release phosphates and pottasium and other nasties in large quantities, which effect the heart and kidneys. This stage is called tumourlysis, so it is hoped that a gradual decline is acheived, at a rate that Fred can process. Too much and he starts to move toward serious problems quite rapidly. Treating this has its own risks so is a fine balancing act of giving and taking away constantly.

The following is a brief resume of whats being going on. I decided to create this because lots of people were contacting us about Freds progress and it is difficult to make sure everyone who is interested, is actually informed. Needless to say, the cards and messages are all lovely gestures which, at a very low time for us, does cheer you up. Fred on admission was only sixteen weeks old, but clearly has a huge circle of friends who have wished him a speedy recovery. Please continue to call, text or email as it does not cause us any problems. If we do not respond promptly we may be in the hospital, or might be up to other things. Again, please do hesitate to contact us as it certainly makes me feel better by sharing our news.

I hope the following is of interest, and please feel free to make any comments you wish. At the time of creating this (27 July 2006) I do not have a clue how it works or what it looks like, so please say if it looks wonky.

Best wishes, Tim - and Rachel and Freddie.