One step closer ...

... to knowing if there is a brain in that head of his.

Yesterday was a long and hungry one for Rhys.
After rushing up to Bristol the night before and finally getting to bed after midnight he was up early.
As he was having surgery he wasn't allowed anything to eat.  Even fluids changed from juice/squash to plain water by the early hours.
We'd been told that he would be about 3rd on the list for theatre.  This would mean that he would be having the biopsy about 9am.
After an early morning drive from Yeovil back to Bristol,  including seeing parts of Somerset I would not have expected because of a major incident on the A37, I arrived in Bristol in time for Rhys to go down to theatre, and to keep Tracey company, while we waited for the operation to finish and Rhys to be moved to recovery. 
By the time I arrived Rhys had been told that he wouldn't be going down until late morning.
Ha!
First Rhys had to have a CT scan to allow them to perform the biopsy in the best possible way.  This ended up being at 11:30.
If you're around Rhys be prepared for him to glow in the dark or interfere with radio signals and electrical equipment due to the amount he has been blasted with radiation, magnetic fields and the other forms of energy that have been used to explore his body.
Finally at just around 1:30 he went to theatre. The procedure didn't take too long and he was soon in recovery and then back on the ward in his room.
We bumped into a few people from previous times in Bristol. Both Jamie and Jax have spoken with us.
Now we have to play a waiting game.  The doctors have said it could take anywhere from 4 days to 3 weeks to get the results because they need to dissolve the bone surrounding the tissue they removed before they can examine it. Since Rhys' treatment all hinges on the results of the biopsy he can't start the radiotherapy to destroy any of the tumour in his abdomen that might not have been removed.
Various doctors and consultants popped in after the operation.  Rhys had to stay in overnight so that he could go to the dental hospital to have xrays of his teeth and the area where the Neurofibroma had been spotted.  This has happened and it looks like this might in fact be nothing more than the remnants of the root of a tooth he had removed when he had his braces fitted.
The plan going forward is to hopefully go home today and then come back up for more scans and a discussion with his consultant when the biopsy results are back. At that point we will know what the long term plan for Rhys' treatment is.

Welcome to the house of fun

What a insane, fun life we lead.
5pm this evening and our phones are ringing. Its Bristol Children's hospital.  Could we get up to the hospital this evening so that Rhys cqn be admitted to hospital in order that tomorrow morning they can do a biopsy on the meningioma to confirm what the lump actually is before they start the radiotherapy.  If it's not what they thought it was then the treatment plan changes.

4 hours later, after a mad packing and dinner eating session  we are at the hospital waiting for the surgeon to come and talk to us about the operation and get consent forms signed.

Since all of this has happened at short notice  we've got problems with accommodation.  Only one of us can stay with us while the other has to go home.

Its certainly been a fun evening,  mad dash to Bristol, into room and then down to A&E because we have to have gone through them to be admitted to the ward. I assume that is because we've come up to hospital outside the normal hours for going onto a ward.

One thing is for certain, we are living in interesting time.

Does our house smell or something?

He's only been home two days and he can't take it anymore.
Rhys is back in hospital, Yeovil this time. Hopefully it will just be an overnight stay.

This morning he was complaining about some pains so after checking with the hospital we took him to the hospital for them to check him out. After taking some samples for testing they sent him home at lunchtime.

By late afternoon he was in pain once again and so we took him back in on the advice of the hospital. After a quick examination the doctors decided to keep him in overnight.

Dinner was sausage and chips from Palmers in town.

With food out of the way we were treated to another visit from the doctor who asked if he wanted to stay in or go home. Rhys decided to stay in overnight.

Hopefully by tomorrow they might have the results of the cultures that they were trying to grow so could have a better idea of what is causing the pain. If its nothing serious and they've got the pain under control then he might even come back home.

We might have to invest in one of these in order to encourage him to stay at home for more than 48 hours.

Day something or other...

We've honestly started to lose track of what day we're on. That's what spending time in hospital, traveling between Yeovil and Bristol, wandering around the shops day in day out, does to you.

Still today is an important one.

Today is the day that Rhys was finally discharged from hospital and was able to return home to Yeovil.

He's still got a long way to go but being home is going to do him the world of good.

He might even manage to show is face at a venue where people throw large round objects at bottle shaped objects and try to knock them down.

Day 14 and the future begins to reveal itself

The last few days have been interesting!
The NHS has proved that for a large organisation it can be surprisingly efficient. Too efficient in fact.

We've been waiting for the results of analysing the tumour that was removed by Mr Rogers (we've finally found out how he spells his name after spelling it Rodgers in previous posts).

On Thursday I received a phone call while at work from the Hematology and Oncology department to inform us that they'd been asked to make an appointment for Rhys with one of the consultants in the Teenager and Young Adult clinic on Monday. Confusion ensued.

As Rhys is in hospital we couldn't understand why the consultant couldn't come over to see him instead of making him go to them. We also couldn't understand why they wanted to see him and the person that rung couldn't give us any more details. Checking with the doctors there was nothing to indicate that any results had come back from the tests. Even the nurses couldn't figure out why we'd been asked to go to the clinic.

We did eventually find out that when youngsters reach Rhys' age that they do get migrated from the children's clinic to the teenage and young adult clinic. It looked like a case of bad timing.

But no!

Friday saw us receive some news from Steve, Rhys' consultant, which cleared up everything.

The results of the tests had come back and Steve had been consulting with one of the oncology doctors.They'd agreed a way forward with his treatment. Before Steve could talk to us and explain what was planned the NHS managed to be super efficient and offer us an appointment but which left us confused.

The results of the tests done on the tumour showed that although there was clear tissue at the edges there were several areas where the tumour went right to the edge of what they were looking at, the implication of this is that its possible that microscopic amounts of tumour could have been left behind. Amounts too small to be seen by the naked eye. Its entirely possible that all of the tumour has been removed and that the surgeon was incredibly precise. However, to ensure that anything that remains is destroyed then Rhys will have to have a course of radiotherapy. We don't know the full details yet but its going to be over a period of 6 weeks from Monday to Friday, which means he'll be home for weekends and staying at CLIC House during the week.

Of course for Rhys that's not going to be such a hardship. The radiotherapy isn't going to be easy but staying somewhere that has a pool table is something that he's looking forward to. Now if only they had a ten pin bowling alley so he could keep his hand in.

Day 13 and some real food

Rhys has finally managed to start eating real food. Nothing exciting but its a start.
Breakfast was a choice between ice cream and yoghurt. A hard choice but Rhys opted for strawberry yoghurt.
Later on in the day he had some vanilla ice cream.

Its not much but its soft and very easy to digest.

Nanny and Grampy came to visit so he had a bit of company and managed to make his way to The Snug to play on the Xbox.

The day ended with watching Superman The Return.

Day 12 and a breath of fresh air

For the first time since the operation Rhys has been able to get the area where he has stitches wet. So it was bath time!
Although his room has a shower its not the most sensible idea for him to use it just in case he slips and hurts himself.
However, the ward does have a really nifty bath that goes up and down and has hoists and everything to allow them to get patients in and out.

Rhys also had to have a scan which meant he had to been injected with a radioactive dye. Apparently it means that he will be radioactive until Friday afternoon. So if you are anywhere in the Bristol area and see an eery glow in the night sky its might be Rhys.