Another trip outside

Now that Rhys has made it to non-isolation he has the chance to see a few extra faces. So far he has seen Karen and Abigail, Grandad, Grampa and Grampy.

Being in non-isolation has also meant that while he has access to our car, he can get out to Sam’s which is what happened yesterday (Saturday 2^nd August). The idea being to allow him the opportunity for a shower.

After over two months of being limited to a single room in the hospital, a large amount of which has been spent lying in bed, his muscles aren’t as strong as they used to be. Our accommodation at Sam’s is on the top floor and the lift only goes to the first floor. By the time Rhys had walked the flight of stairs to the top floor and made it to our room he was worn out and needed a rest on the bed.

Eventually suitably recovered he was able to make his way to the bathroom. Rather than the anticipated shower, due to worrying that his legs were unsteady, he opted for a bath.

He admitted that this first proper bath in such a long period of time felt really good and the chance to just sit for a while and soak was something he enjoyed.

As non-isolation is so quiet at the moment, there are only two or three patients in here everyone else is either coming in on a daily basis or is in isolation, there is the chance that one of the bathrooms can be made available for his use only. If its the one closest to the room then it only has a shower so the weekend trips to Sam’s for a bath will be a regular feature until he is discharged.

One other benefit of being in non-isolation is that it was possible to bring back Mary a stuffed toy cat that he has had for years and which had to be left behind when Rhys went into isolation because everything had to be cleaned which would have meant a trip through the washing machine and tumble dryer. Ok, Ted had the experience of that back on day 6 anyway but I bet it wasn’t a pleasant one.

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.

Day 12 – Mid Week Update

Some of you might be wondering why we’ve not posted for a few days. Its nothing serious just haven’t managed to get around to it. Rhys has been unwell but the doctors don’t deem him as being seriously poorly.

Rhys’ sore throat and mouth aren’t as painful today. On a scale of 0 to 10 where 0 is comfortable – no hurt and 10 is intractable – hurts most, its now a 3 or 4 as compared to the 8 to 10 last weekend. Rhys has managed to drink several glasses of water today which is fantastic considering he was barely able to take a sip up until yesterday. Looks like he’s getting over this little hiccup.

He’s still unwell at the moment with the doctors suspecting something called adenovirus. They need to do further tests to confirm it before they start treating it. Rhys has had a high temperature for the last couple of days with it reaching over 40º C on several occasions today. Rhys has also had the shakes several times as a result. The shaking has been quite severe during these episodes. The doctors say its something called rigor.

Rhys has now moved to a room with a view but no shower to one with not quite as good a view but a shower. This evening he had a shower while going through one episode of rigor. The doctor that was on tonight was impressed that he’d managed to walk let alone have a shower while experiencing rigor and the violent shaking.

9:20pm and its dead quiet on the unit, just the sound of someone’s drip pump alarm. Normally its noisier than this but someone forgot to put 50 pence in the meter and the electric went out about an hour ago. Even the backup generators failed to kick in. By a bizarre coincidence as I type this the power comes back on and it gets more noisy as the air conditioning kicks in.

9:30pm and the fire alarm has gone off. Typical, we were hoping for an unexciting night but its not turning out that way.

9:35pm and the alarm has gone off. What next I wonder? Peace and quiet maybe? We’ll see.

T-Day 10:50am

Today its happening.

After 3.30 the last radiotherapy, I am going through to isolation and sometime after that is when the bone marrow transplant will start.

Then we are counting post transplant days.

Mad Amy

We made to the mad house.

Everyone was pleased to see me Amy did not know we were coming for tea, we had sausage and mash and no veg.

Gran bought me the Primeval DVD box set.

Yesterday my dad and uncle Dave went to the pub. (For last orders – Dad)

My mum and dad went shopping this morning, Gareth went into town with them.

Latest Plan

Assuming that Rhys’ blood counts have recovered sufficiently for everything to go ahead the plan for the next couple of weeks is: -

• Sunday 11^th May – All three of us go up to Sam’s House. Tracey and Rhys stay there, I come home.
• Monday 12^th – All three of us meet with Michelle to have the postponed chat about the treatment.
• Tuesday 13^th – Rhys has his bone marrow harvest and teeth out.
• Friday 16^th – Conditioning begins.
• Friday 23^rd – Transplant Day!

Have a good bank holiday.

Rhys’ first blog entry

On Thursday (24th April – Dad) at 4.30 I had a BMT bowling party.

I was going to have 10 people come but 7 people came, the 3 that did not come was not well.

We had drinks and food.

When I got home I had some presents and cards.

Then went to bed and had a bad night.

Best Laid Plans of Mice and Men

Well, everything has been going so well up to know with Rhys’ transplant. The donation was all set to tie in with the 9^th for Rhys to have his transplant. We were getting packed ready to go up to Bristol tomorrow in order to get settled in before bloods, radiotherapy test doses and the chat with Michelle.

Of course it was too good to be true.

Rhys had a bit of a temperature this morning. When we rechecked it using the ear thermometer it was 38.4º. Checking it under his arm was slightly cooler at 37.8º. We checked with the children’s ward at Yeovil who told us to bring him in because of the above 38 temperature. Tray stayed home in order to continue sorting out everything her and Rhys would need for their stay in Bristol.

Doctor Nicole was at the hospital when Rhys and I arrived. By now Rhys’ temperature was normal and we all agreed that we didn’t want him to stay in hospital. As a precaution it was decided that one of the doctors should check him over anyway.

Rhys was feeling pretty fine in himself, his ear was hurting a bit. The doctor checked him over and everything looked fine. However, just as a last test it was decided to get Rhys to do a urine sample and test that.

A bit of time passed between Rhys providing the sample and the doctor returning. It did cross my mind that it was taking longer than usual to test his wee but it was warm in the Rainbow suite and the pair of us dosed off on the settee.

When the doctor came back he told us that the test had been positive and that they have found traces of nitrides. Having consulted with Bristol Rhys was admitted to Yeovil to have 6 hourly antibiotics.

This means that the entire schedule for this week will get delayed, if not the entire transplant schedule. At best Rhys wont get discharged from Yeovil until late Monday, if not Tuesday.

So best laid plans and all that we’re not going anywhere fast.

At least we’ve got the big plasma TV to watch things on.