Day 54 in the Little Brother House

Well its day 54 (or day 61 if you count the time from the first day we pitched up in non-isolation for conditioning).

Its been a roller-coaster ride but there is light at the appearing at the end of the tunnel.

Yesterday Rhys managed one half of a piece of toast in the morning and some new potatoes in the evening.

Rhys came off his TPN today so that is two less pumps going overnight, and one less to bleep at 3am in the morning. However, this does mean that he has to eat more solid food. Zoe, the dietician came in today and we talked about what he could eat. Having gone down the list we were given there isn’t a lot that he likes and so he is now allowed plain chicken, turkey, fish fingers and crisps. Not all at the same time of course but bit by bit over the next couple of days.

So far today though we have scratched the chicken and turkey off the list. The chicken because it was a piece of leg and not breast, Rhys doesn’t like leg meat, the turkey because it came covered in gravy which he didn’t like. Tomorrow is therefore fish fingers day which means crisps can be included on the menu from Saturday.

Rhys has also been given some special fruit drinks to help supplement his diet. He’s opted for the apple flavour. Yesterday we tried mixing them with apple juice and also water but they still weren’t drinkable. Having discussed this with Zoe today we mixed it with flat lemonade and it became much more drinkable. Even better, as fizzy drinks were off the menu, the lemonade didn’t upset his stomach.

Strange thing about this juice drink is that it smells just like Scrumpy. Now if I was to combine it with the liquid left in the alcohol wipes container we could have our own moonshine cider. Mmmm, tempting.

The doctors have been monitoring Rhys’ liver function during the blood tests as said previously. The count had been going down until yesterday when it started climbing again. Today the count nearly doubled. We believe this is likely to be due to something going wrong in the lab. Tomorrow will confirm or deny this.

Tomorrow will also bring Rhys’ weekly foot massage. Jax really should get a medal for doing these massages.

Also tomorrow Rhys has another CT scan to see whether the fungal infection that was on his lungs has cleared up.

What with the school teacher coming in for lessons as well it will be a busy day.

Oh, and Tracey comes back after being ill for a few days. Mind you I’m not sure that she’s totally recovered because if she was then she wouldn’t be so eager to come back into hospital.

Day 51 Update

This was going to be the day 50 update but its taken me so long to write it that we’ve got even more to add to it so its day 51.

Well Rhys is still in isolation. As you can see for the latest video we’ve put up on YouTube he is enjoying the foot massages. He’s enjoying them so much that he falls asleep at the end of them.

Latest news is that Rhys is continuing to eat solid foods. He has a new diet plan - no bacon sandwiches on it yet Steve, one of these days that sandwich will arrive you know.

The kind of things he gets to choose from at the moment are rice krispies, cornflakes, rice milk (his diet is low fat, low fibre, lactose, wheat and caffeine free), white boiled rice, plain mashed or boiled potatoes, a small portion of tinned peaches or pear, plain rice cakes (you should see the list of items that have to be checked for on the label on the packaging that indicate it contains lactose), boiled sweets and a variety of half strength, diluted or decaffeinated drinks.

Today he managed a dessert spoon of rice krispies for breakfast and a similar amount of mashed potato for tea, a good sign as the sooner he is eating, the sooner that they can reduce the amount of TPN they are giving him As TPN contains glucose, a form of sugar, this sticks to the inside of the Hickman Line and provides a lovely place for bacteria to grow and cause infections.

Once he’s eating for himself and isn’t reliant on the intravenous and nasal feeds as much then it will be several weeks before he is eating beef burgers and waffles again but eat them he will.

The consultant came in today and we had a long chat.

To look at Rhys and his blood results you would think that everything is going to plan and that nothing was wrong. However, one of the things that they check for is to do with liver function. This has been going up and down like waves on the sea.

At the moment what they are monitoring is going down, this might be due to the drugs they are giving him.

They are not sure whether the reason for this is GvHD or the adenovirus that he’s got. They have been monitoring the adenovirus and the levels have been quite low, somewhere in the mid-hundreds, low thousands. The last measurement they did for it though showed that it had jumped to over 20,000 copies of the virus per millilitre of blood.

He is being treated with steroids at the moment with the possibility of using something called immunoglobin, which is full of other people’s antibodies. Using this is dependent on whether it has been cleared for use in dealing with adenovirus.

Adenovirus is something that most people have as it lives in the stomach and intestines. In healthy people with a good immune system it isn’t a problem as the bodies natural defences are able to keep in under control. When the body isn’t able to deal with it then you might get stomach problems, feeling queasy and such like.

In about 5 to 10% of people who have had transplants because their immune system isn’t what it should be then, for some currently unknown reason, the virus is able to get into the blood stream, something it doesn’t normally do, and reach other organs. In Rhys’ case it looks like it may have reached the liver.

The drugs that the doctors are giving Rhys at the moment can bring it under control, when they will achieve that isn’t definite but there have been cases much worse that Rhys where the drugs are given and suddenly, almost overnight, the adenovirus disappears. That’s what we are hoping for here.

As its the weekend Tracey went up to Jackie and Dave’s on Friday. Today, Sunday, she phoned and is full of a cold. No coming back to the hospital for her until she is fully recovered. Unfortunately for Rhys it means that he has to put up with his annoying father until she returns. On the flip side, its boys only here so we’ll have to party while we can.

Rhys is asleep at the moment (its nearly noon). He went to bed early last night and was asleep by 8pm. Apart from waking a couple of times, once to be sick, during the night he slept through until 8:30 this morning when both of us got up and watched Toonattik, fortunately just in time to watch Power Rangers. Just after Something for the Weekend Rhys lay back down and went to sleep.

Having just spoken with Jenny the nurse looking after him today the reason that he’s sleeping so much is probably because of the Total Body Irradiation he had before the transplant. Its now been over 6 weeks since the transplant and the TBI. About 6 weeks after TBI patients go through a phase of being sleepy. It looks like this has caught up with Rhys at last. Looks like being an exciting week of watching him sleep. At least it will be quiet.

More news later in the week mainly so Tracey can follow along while she puts here feet up and recovers We might even post a video of Rhys sleeping – if people can tune into Big Brother to watch people sleep why not to watch Rhys.

Day 44 Update

Its been a while since we posted a proper treatment update for people so here goes.

Rhys is not on medication as much of the day as he was a couple of weeks ago (at some point I’ll post a complete list of all the drugs that he has had to take). He’s managing to get through most of the night with just TPN and the feed that goes in his nasal tube. The nurses are still coming in at around 2am to do observations and at 6am to take bloods, other than that though its pretty quiet at night which gives the opportunity to get a reasonable amount of sleep.

His diarrhoea is still there but at least its not affecting his sleep like it was.

He’s had plenty of visitors. Nanny, Gran and Aunty Anne come in to see him and Tracey on a regular basis. Alex has been up to see them too.

The teacher, music therapist and play specialist have been in as well.

He’s almost finished making a hot air balloon out of papier mache. Once he has the balloon and basket connected together then we’ll see if we can get it to fly without setting fire to the hospital or getting the fire brigade called out.

His blood counts are looking good at the moment. Haemoglobin has been above 9 for the last 8 days, white blood count has been above 5 for the last week and above 6 for the last 4 days, platelets dipped to 57 yesterday but were above 60 for the 6 days before that. Finally his neutrophils have been above 3 for the last 8 days. Basically things are looking good from that point of view.

Michelle, his consultant, came and saw him the about a week ago and said that hopefully he’d be able to get out of isolation soon. By soon that means another week from today and he might be in non-isolation or if he’s really lucky at Sam’s.

Tray hasn’t managed to get away this weekend as Jackie isn’t well. This has given us a chance to actually go out and have a meal together. The first time in what must be 6 weeks.

Speaking about food Rhys has taken the first steps towards eating a bacon sandwich. He’s managed to eat a quarter of a slice of bread with a scraping of butter and Marmite on it. I know, its an acquired taste but it is edible, especially if your diet consists of liquids going directly into your veins or down your throat via your nose. Besides after all this time not eating his taste buds have probably packed their bags and gone on holiday somewhere sunny, unlike the dismal wet weather this weekend. Mind you being in hospital when the weather is like this does have its advantages. He’s also managed to eat some Rich Tea biscuits.

Anyway, that’s all for now. Check out the latest photos which we’ve uploaded and we’ll do an update again later in the week.

American Law Reports

Since everyone is sending us jokes and riddles here’s some I received. The following are all taken from transcripts of true court cases in America.

LAWYER: What gear were you in at the moment of the impact?
WITNESS: Gucci sweats and Reeboks.

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LAWYER: This myasthenia gravis, does it affect your memory at all?
WITNESS: Yes.
LAWYER: And in what ways does it affect your memory?
WITNESS: I forget.
LAWYER: You forget? Can you give us an example of something you forgot?

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LAWYER: What was the first thing your husband said to you that morning?
WITNESS: He said, “Where am I, Cathy?”
LAWYER: And why did that upset you?
WITNESS: My name is Susan!

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LAWYER: Now doctor, isn’t it true that when a person dies in his sleep, he doesn’t know about it until the next morning?
WITNESS: Did you actually pass the bar exam?

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LAWYER: The youngest son, the twenty-one-year-old,how old is he?
WITNESS: Uh, he’s twenty-one.

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LAWYER: Were you present when your picture was taken?
WITNESS: Is this a trick question?

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LAWYER: She had three children, right?
WITNESS: Yes.
LAWYER: How many were boys?
WITNESS: None.
LAWYER: Were there any girls?
WITNESS: Are you kidding me? Your Honor, I think I need a different attorney. Can I get a new attorney?

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LAWYER: How was your first marriage terminated?
WITNESS: By death.
LAWYER: And by whose death was it terminated?
WITNESS: Now whose death do you suppose terminated it?

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LAWYER: Can you describe the individual?
WITNESS: He was about medium height and had a beard.
LAWYER: Was this a male or a female?
WITNESS: Guess.

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LAWYER: Is your appearance here this morning pursuant to a deposition notice which I sent to your attorney?
WITNESS: No, this is how I dress when I go to work.

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LAWYER: Doctor, how many of your autopsies have you performed on dead people?
WITNESS: All my autopsies are performed on dead
people. Would you like to rephrase that?

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LAWYER: ALL your responses MUST be oral, OK? What school did you go to?
WITNESS: Oral.

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LAWYER: Do you recall the time that you examined the body?
WITNESS: The autopsy started around 8:30 p.m.
LAWYER: And Mr. Denton was dead at the time?
WITNESS: No, he was sitting on the table wondering why I was doing an autopsy on him!

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– And the best for last: —
LAWYER: Doctor, before you performed the autopsy, did you check for a pulse?
WITNESS: No.
LAWYER: Did you check for blood pressure?
WITNESS: No.
LAWYER: Did you check for breathing?
WITNESS: No.
LAWYER: So, then it is possible that the patient was alive when you began the autopsy?
WITNESS: No.
LAWYER: How can you be so sure, Doctor?
WITNESS: Because his brain was sitting on my desk in a jar.
LAWYER: I see, but could the patient have still been alive, nevertheless?
WITNESS: Yes, it is possible that he could have been alive and practising law

Another Hickman in Another Place (with thanks to Andrew Lloyd Webber and Tim Rice)

We’ve decided to do a musical post to summarise the last week. I’ll leave you to work out what tune this should be read to as a bit of a challenge, you’ve not got many to choose from. Answers on a postcard to Mr A Lloyd Webber c/o BBC Television Centre, London. Alternative answers, jokes, riddles on a bacon sarnie to Mr R Powell.

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[Rhys:]

I don’t expect my Hickman lines to last for long

Never fool myself that my lines will stay in

Being used to infections I anticipate it

But all the same I hate it, wouldn’t you?

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[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

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[Rhys:]

Time and time again I’ve said that I don’t care

That I’ve no immunity, that I’ll smile through and through

But every time it matters all my words desert me

So any bug can infect me, and they do

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[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

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[Rhys:]

Call in three months time and I’ll be fine, I know

Well maybe not that fine, but I’ll survive anyhow

I won’t recall the names and places of each sad occasion

But that’s no consolation here and now.

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[Chorus:]

[Rhys:] So what happens now?

[All:] Another Hickman in another place

[Rhys:] So what happens now?

[All:] Take you down to the ops room place

[Rhys:] Where am I going to?

[All:] Your going to theatre

[Rhys:] Where am I going to?

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[All:] To the loo

New page added

Check out the new page ( link is on the right under Pages) to a short description of his illness written by Rhys with the help of the hospital teacher.

Baldy Blogger bone marrow drive at Mother of Parliaments

Sometimes Members of Parliament can actually do something worthwhile. Check out this video of an event involving Kali Mountford, Ed Balls and Alan Johnson recently.

Adrian’s posted on his blog about this and there’s even a link so that people can add their name to the petition on the Downing Street website if they want to back his campaign.

By the way apparently calling Westminster the Mother of Parliaments is a misquote.

New photos and video

The latest pictures have been uploaded to Fotki. Day 28 is missing as it was a truly frenetic day and there wasn’t time to take a picture in the end.

There’s also a new video on YouTube. Public health warning. Please where earplugs before watching it as it contains scenes of singing and playing musical instruments.

20th June Treatment Update

Rhys had another scan yesterday (Thursday) to check on how the fungal infection was going. We’re still waiting to hear from the consultant about this properly. We do know that it wasn’t causing his temperatures.

So because of this and his line infection, last night between 6:45pm and just after 9 Rhys went down to theatre and had his Hickman line removed, a cannula inserted into his hand on one side of his body and a peripheral line inserted near his ankle on the other side. As you can imagine he’s not at all happy about this.

Its proving awkward to move around and do things with the drips attached and so Tracey and Rhys had a bit of a rough night.

Unique Chap

As you might be aware from chatting with us and some of the earlier posts Rhys is a fairly rare character as far as his consultant in Bristol is concerned.

He is on his third batch of treatment for his A.L.L. OK there are others who have had to have multiple batches of treatment so this he’s not rare in that respect.

He has had total body radiotherapy this time around as well as having cranial radiotherapy during the second round of treatment. Again the protocol for relapse treatment calls for cranial radiotherapy in some cases and total body irradiation is part of getting ready for a transplant.

He has neurofibromatosis. This is what makes him a rare case as there are not many cases of this that crop up in the UK or worldwide and in Bristol’s experience he’s it.

But he’s not satisfied with that apparently. No sirry Bob.

As you know Rhys hasn’t been 100% over the last couple of weeks.

First he had a CT scan which showed that he had a fungal infection.

Then he had a camera down his throat and some other tests which revealed that he had mild graft versus host disease.

Now it appears that he has an infection in his Hickman line.

The doctor looking after him said that one or two infections is normal but three, not normal.

Typical of Rhys, can’t do anything the easy simple way. Has to do it the awkward way.

At least they are treating the infections so hopefully we’ll have these licked soon so that he’s able to eat those bacon sarnies soon.