Number 1

Its been a busy week for Rhys with plenty of visitors and joining his friends at the bowling club in Taunton.

Monday was our last day in Wales. The morning started with a hearty breakfast before returning to Nanny's to see everyone.

An impromptu photo call happened in the garden with his two cousins.

On the way back from Nanny's Rhys got to see his Great Aunt and Uncle. It was a pleasant couple of hours chatting with everyone.

Tuesday saw Gran, Grandad and Amy come to visit which was really nice for Rhys as they stayed overnight. It also saw another of the meals ticked off his list, the Apple Crumble Pie which Gran cooked. It was a bit of a challenge as we had no recipe to use but Gran is such a brilliant cook that she managed to pull it off.

It certainly taste yummy with custard and ice cream.

The rest of the week was pretty quiet. Saturday saw Rhys make the trip to Taunton to play ten pin bowling.

A couple of games and a nice little present to remind him to hit the king pin when he bowls ensued.

It never rains but it pours

In this case quite literally.
Today we paid a surprise visit to Rhys' Nanny and Grampy in Wales. At the same time we were able to catch up with his Aunty Netty, Uncle Paul and his cousins Lottie and Jess.
An earlty start saw us leave Yeovil at 7am and have a quiet, if wet, drive to South Wales.
We had planned for Rhys to knock on the door and surprise everyone, apart from his aunt who knew we were coming. In the end, despite doing his best impression of a commando and crouch walking up to their front gate he was spotted by Nanny.
Everyone was really happy to see him, especially his cousins.
The morning was spent catching up.
We'd planned to go out during the afternoon but the weather decided to interfere with the plans.
Instead of our planned visit to the Welsh showcaves we ended up at an indoor children's play area. Several hours of climbing up and down the equipment followed, which was plenty of exercise for Rhys and the rest of us, some more limber than others when it comes to negotiating the equipment.
On return to Nanny's we had some cake before we headed to our hotel for the night to get ready to go out for dinner.
Dinner was nice. Rhys chose a mixed grill without the egg, peas, mushrooms and grilled tomato, which left just the chips, onion rings and meat. Tracey opted for ribs and I went for a Thai red curry. Rhys' cousin Lottie even had lettuce (with a lemon and herb dressing) which she liked.
Some problems with getting a taxi to get Nanny and everyone home almost finished off the evening, although everyone did eventually get home.
Our evening in the pub did end when Rhys almost died of embarassment while Mum discussed certain of his health issues on her mobile in the middle of the pub.

3 meals down

When he was in hospital after the tumour and was on the TPN Rhys was coming up with different ideas for what each day's batch could be.
Now that he is home we've started to actually have those meals.
So far he has had his full English breakfast, the cheese topped potatoes with rump and fillet steak. Yes he did actually have a fillet steak and half a rump steak and he ate it all.
The other meal that he's ticked off was the pepperoni pizza with garlic bread.
Still to come are homemade chicken tikka massala and the apple crumble pie.

Rhys' Random Thoughts - Number 1

While cleaning his teeth in his hospital room's bathroom yesterday evening.

"Yvonne" exploded from his lips.

Who you ask is Yvonne?

She was the play specialist on the BMT ward when Rhys had his bone marrow transplant 6 years ago today.

Yup.

6 years ago today, at the time I write this  (10:15pm) Rhys was 45 minutes into his transplant. The marrow solution hit his Hickman line at 9:35pm.

For some reason while he was in the bathroom yesterday he blurted out Yvonne's name. Next time we go up to Bristol we will have to see what has happened to her.

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.

Days 10 and 11 - a mile in his bare feet (or maybe slippers)

Day 10 saw Rhys take the longest walk he's managed since before the operation. Up until yesterday the extent of his travels have been the one or two shuffling steps that have got him from bed to chair and back. Yesterday saw him walk from one side of the bed all the way around to the other side to sit in a chair. Tiring stuff as he dozed off while sitting in it.

His nutrition for the day hit a bit of a snag. Normally the nurses come between 7pm and 9 to remove his old TPN and put up the new one. Last night the TPN didn't materialise which means a good 12 hours without any nutrition going in. Not a problem for most people as we don't tend to eat in the middle of the night (OK midnight snacks excluded). For Rhys though his body has had a constant flow of nutrients since they put him on it. So by the time his latest batch of TPN is up it looks like it will be, wait for it, a bacon sarnie.

 Day 11 was more walking. Even further as Rhys was temporarily freed from the captivity of his drip stands. The first trip was just outside the room and into the "garden" room. This is a large space with a glass roof that has comfortable chairs, tables, a jukebox and an air hockey table.

The second was to The Snug which is at the other end of the ward and contains a large screen TV and an Xbox, which Rhys took advantage of to play a game or two.

Of course while Rhys was doing this Mum was taking advantage and snapping some pictures for posterity (and the blog).

Oh, and those are special surgical socks that he's wearing to help stop blood clots from forming after the operation and while he's recovering and lying in bed.

Day 9 in a chair (reprise)

Sunday night was much better than Saturday. Rhys managed to get a lot more sleep although we were still awake early.
Some early exercise was called for though because the cannula that was put in yesterday had come out. Although not in an obvious way. It was only when Rhys realised that the bed was wet that we figured out that there was a problem with the cannula and when the nurse came in to check it one touch and it dropped away from Rhys arm.
With wet bedsheets we had the opportunity for Rhys to get out of his bed and into a chair for a short while. I wasn't sure that he would want to but he did. It was only for about 5 minutes but it was something and he wanted to do it.

The cannula was replaced later and once again Rhys' freedom to move about was curtailed. Not that it stopped him much. He was in an out of bed like a yo-yo. In between Rhys moved himself around on the bed a number of times to get himself more comfortable, something that even the day before required a lot of help.

Steve, one of the consultants popped in to see Rhys and find out how he was doing. While we were talking he mentioned that we hope to have the results of the tests done on the tumour this week. We should find out as a result whether or not all of the tumour really was removed. Hopefully all of it has been removed so that he doesn't have to have radiotherapy.

Mum returned to Bristol in the afternoon and brought Gran and Grandad to visit. Throughout their visit Rhys wasn't the most chatty but then having four people in the room, who aren't doctors or nurses, at the same time is the largest number he's had in a week. Besides by the time they arrived Rhys was about halfway through 4 hour Power Rangers Samurai marathon on DVD.

The next few days Mum has the pleasure of Rhys' company and recovery. I'm sure that they will have a fine time. She just has to avoid accidentally blocking people's phone numbers on her mobile, especially the home number!!

Day 8 - we're playing for NG land

Has anyone seen a letter E we seem to have one missing from the title and a space has appeared in the name of a national football team.

Rhys' nasal gastric (NG) tube has been causing him some problems. Its been irritating him so much that he's been coughing and gagging and bringing stuff up, stuff that his body does need to get rid of but is unable without a bit of external help.

Overnight and during the morning it had been really bad with the NG tube, the doctors didn't want to remove it because it would cause other problems.

In the end the decision was made to remove the tube and replace it with a thinner tube that might not irritate as much.

With the tube out and me away at CLIC House getting some things so that I could stay in overnight and Rhys decides to show that there is still a glimmer of humor in him, even in the middle of everything.

Rhys: "Where are you?"
Me: "At CLIC House."
Rhys: "Are you in the shower?"
Me: "Not really, I don't usually answer the phone when I'm in there. I'm just finishing up and then I'll be back to the hospital."
Rhys: "The nurses have taken my tube out, they are going to put a smaller one in when you get back."
Me: "OK."
Rhys: "Don't rush back! Take your time."

So I dawdled a little bit.

On return we took advantage of the brief period of freedom that Rhys had without the NG tube to give him a wash, clean his teeth and give him a bit of a refreshing clean up. He even allowed a picture of his to be taken.

Although his eyes are closed this is a much nicer picture than the one of him with his eyes open.

Eventually the replacement tube was fitted. The replacement tube still causes him some problems but the liquid that the nurses are draining through it looks more of a normal colour. There's still a lot of it so the tube has to stay in until there is very little being drained. One thing that has changed is that he doesn't seem to be gagging as much with the new tube. Its still an annoyance but he's not coughing and spluttering anywhere near as much as he was with the old tube. In fact Rhys thinks that removing the old tube, giving him an hour without the tube and inserting the new tube is one of the reasons that the fluid is coming out looking so much better.

One of Rhys' cannula finally gave up the ghost today and had to be removed. A new one was fitted but it's in the opposite arm so he has lost a bit of the freedom he did have.

Rest continues to be the order of the day with lots of dozing with some shifting of position. Its slow but sure progress that's for sure.

Late afternoon the nurse that was looking after him popped in to tell us that he was being moved to Ward 35, which is the adolescent ward. Its a new ward on level 7. As much as they wanted to keep in on the ward there was no guarantee that they would be able to keep Rhys in a room of his own and he might have to be moved onto one of the four bed rooms. Something that might not have been appropriate with the number of babies that were on the ward.

35 is a really nice ward that is designed with the needs of adolescents in mind. There's plenty of spaces for them to chill with other patients, individual rooms and no restrictions on where hot drinks can be taken, parents can also eat in the rooms.

Rhys' room has its own bathroom with shower, flat screen TV and even a small wardrobe.

For the first time since the operation Rhys has been awake enough to enjoy watching a DVD all the way through, although we did end up starting it in one ward and finish watching it in the other.

Pain levels have been pretty good with only a few boosts of morphine needed. Even the irritation from the NG  tube seems to have settled down somewhat.

The day closed with watching the end of a couple of films on TV.

The Long Dark Breakfast Time of the Soul

Saturday night was a bad one for Rhys. He was sick a number of times and the nurse needed to aspirate him through the NG tube.
The tube has been a source of real annoyance to him recently because it irritates his nose and throat. Unfortunately there is nothing the nurses can do as he needs to have the tube in so that some of the gunk that's building up in his stomach can be removed. Without the tube he'd be vomiting a lot more than he is.
The only alternative that has been suggested is replacing the current tube with a softer, narrower one but that has the drawback that it might not be possible to aspirate properly.
Hopefully thought we are reaching a turning point with the tube because the fluid that the nurses are started to extract this morning looks a lot clearer and normal that the rather fetching green colour that they have been getting.

7:30am Sunday morning and we'd been up for nearly two and a half hours, Rhys was managing to doze something he manages with little problem. We were waiting for the doctors to come and see Rhys and then I'd be able to go and get a change of clothes, some breakfast and then come back into hospital with an overnight bag because Rhys wanted me to stay in. Hopefully he wouldn't have a night like the one just gone past.

Its no secret that as a family we are Christians and attend St James Church in Yeovil. Rhys has grown up at St James and developed his faith through there and also through the youth group at St Johns. Through everything that he's been through yesterday morning was the first time that I'd heard him actually questioning what is happening to him and asking why God allows this to happen to him. He wants answers to his questions, as do we all. Nobody we've spoken with can understand why Rhys has had to deal with his neurofibromatosis, the leukaemia and now this tumour. I know that Rhys' faith will not come out of this unscathed. Whether it will be strengthened or weaken it is still open for debate.

Day 7 in a new bed

Today saw Rhys get a break from Mum, a new bed and some visitors.

When Rhys was in hospital having his transplant we got into a routine where Mum went to stay with her sister over weekends. We took Tracey up to the Cotswolds this morning. Good home-cooked food and the odd glass of vino are the order of the weekend.

I managed to arrive back at the hospital just in time to help as the nurses were trying to get Rhys to sit in the chair so that they could swap the bed for one with a mattress that inflates and deflates to adjust to the body and allow for Rhys to get into differing positions and not get too sore as a result. Lying down for 6 days might sound fun but its certainly not.
The nurses had just got Rhys sitting up as I arrived but he didn't feel like standing up, walking around the bed (being followed by two drip stands) and then sit down in the chair. For the last 6 days he's probably not moved more that 6 feet in total, let alone 6 feet in one go.
The solution was obvious. Since Rhys couldn't go to the chair then the chair had to come to Rhys. Standing up, taking one or two shuffling steps and sitting down was a lot easier to do.
With the bed swapped for the new one the trip back into bed was a equally as short.
The new mattress has taken some getting used to. Rhys has finally managed to get into a position where he's comfortable enough that with the aid of our friend morphine he's drifted off to sleep. With the help of one of the nurses we managed to get him in a bit more of an upright position. Its not surprising that he has fallen asleep though. The sun is shining outside and as much as the room is shaded it still feels like we're sat in a greenhouse.

Just before 11am Nanny and Grampy arrived to visit. Rhys was awake enough to be able to say hello but left most of the talking to Nanny. We sent them out to get something to eat at lunchtime which was well timed as Rhys then fell asleep. Obviously my company isn't exciting or riveting enough. Not surprising, I'd fall asleep if I had me to keep my company.

The rest of the day has been filled with bleeping medical equipment, a nasal gastric (NG) tube that is irritating Rhys' nose and lots of generally not being well. In fact for the first time in days we don't have a TPN meal of the day.

To show you how bad Rhys was feeling this evening he decided that he wanted me to stay in hospital with him overnight. Something that's not happened once since we've been up here this week. So my nice, comfortable double bed at CLIC House has been swapped for a pull-down hospital bed in a room filled with bleeping machines and a noise that borders on snoring.

Day 6 in a world of pain

Today the epidural came out. This was one of the big sources of pain relief for Rhys.
After the epidural had been removed Rhys was due some paracetamol and Tramadol painkillers but before this could happen the physiotherapist came in to get him to move about.
They tried to get Rhys to sit in the chair but while he was moving around the bed and reached a sitting position on the bed he became dizzy and so had to lie back down.
At this point Rhys started to be in pain but the nurses brought in the painkillers which helped somewhat. Enough to allow him to watch the movie Jack the Giantslayer on DVD.
Rhys says that there wasn't much killing of giants so its an OK film but not brilliant.


Rhys' summary of the film (Spoiler Alert - skip if you've not seen the film)
Jack's Dad tells a story of giants and beanstalks to Jack. The Queen is also telling the same story to her daughter. There's a crown that gives whoever wears it the power to control the giants.
Jack and the princess grow up and Jack gets given some magic beans on a market day. The same story is being told by some other guy to different people.
Jack goes home and his uncle who is looking after him throws the beans around the house. One of the beans gets wet and grows into a beanstalk which lifts the house up into the air and takes them to the land of the giants.
Then... well you'll have to watch the film to find out any more.
End of Spoiler Alert

Rhys finished watching the film before he started to be in real pain. Eventually one of the anesthetists came in discuss pain relief with him and it was agreed that he would be put on a morphine PCA. He had one of these when he was having his transplant. Back then there was a low level dose of morphine constantly going through his system and he had the ability to give himself a turbo boost every 5 minutes. This time the low level dose isn't going through, he just has the turbo boost.
Hopefully with the morphine he'll be able to do things soon if we can keep the pain under control.

Tonight's TPN meal is chicken tikka masala, naan bread, poppadoms, prawn crackers and sheesh kebabs.

Day 5 in a chair

Today has been a busy day with several visitors.
Jamie, one of the oncology nurses that used to look after Rhys when he was in for his A.L.L, was first to pop in. He was followed shortly after by Lizzie, who is one of the community nurses from Yeovil.
One of the smallest cannulas in his hands came out this afternoon. It had started to sting so the nurse took it out.
There's been a bit of pain in his abdomen but it seems to have eased because of the paracetamol that they gave Rhys.
The doctors had planned to remove the epidural that has been helping to keep any pain from the surgery under control. That has been delayed until tomorrow.

The big achievement for today though has been Rhys managing to get out of bed and into a chair. For the first time in days he is in an upright position. Its also the first proper chance to check to see if the operation really has improved the circulation to his feet which was one of the things that caused us to discover that he had the tumour.
We managed to check Rhys' feet when he was sitting in the chair. The left was still warm but the problematic right one was cold. Not ice cold like it has been but cold enough to be noticeable. Hopefully this will go away as Rhys' body recovers from the surgery. If not then we're going to be back to square one with regards to the circulation problem.

Tonight's TPN meal is going to be Pepperoni Pizza with Apple Pie Crumble and Custard for pudding.