Day 4 in ICU and Ward

Another peaceful night. Blood pressure and heart rate are satifactory. One of the drugs has been stopped and the line that was being used to monitor his blood pressure has been removed. Its back to the old fashioned (and slightly less accurate way of monitoring blood pressure.
Rhys agreed to show you pictures of two of his friends from the last few days, so we have:-

Lefty

And

Righty

Late afternoon saw Rhys moved from ICU to Ward 31. The long journey between floors included a lovely wait for a lift because the single lift capable of taking a bed that the hospital has was being used by pretty much anyone. Unfortuantely of the 3 lifts in the hospital one of them is out of use. In the end one of us had to go by foot to level 6, get in the lift, ride it down to ground level and then stop people getting in so that we could have it just for Rhys' use. Eventually 2 nurses, Tracey and I, Rhys and his bed and a drip stand squeezed into the lift and made it to the ward.
Rhys' room is a lot more comfortable, he doesn't have to share it with anyone for starters. It has its own toilet and shower facilities (something that he is going to be grateful for when he's able to get around and get the area around the incision wet.

The view from his new room looks like this:-

Rhys has decided that tonight's dinner is gammon and chips and for pudding vanilla ice cream with sprinkles and chocolate flake.

Gammon and chips

Vanilla Ice Cream, sprinkles and flake

So after having had a good wash, with lots of bleeping machines, drainage bags filling at a rate that's going to keep the nurses busy tonight, the day draws to a close.

Rhys is the most awake and lucid that he has been, to the point that he's making suggestions to the nurses regarding things that need to be done.

Doctor Rhys is finally in the house!

And the name of the tumour is...

It seems that the tumour that Rhys had was about 15 cm in diameter which is about the size of a melon. So with this in mind and Rhysl love of Doctor Who I think we might just start refering to the tumour as River.

The thinking goes a bit like this:-

Melon can be shortened to Mel.
Mel is short for Melody.
Melody Pond (character) is the real name of River Song.

Which leads us to River.

Yes I know its a rubbish idea but its been a long week and I'm getting a bit punch drunk!!

Day 3 in and first full day in ICU

Rhys had a restful night and is drifting in and out of sleep today.
He is aware of everything that is going on, so much so that he has already vetoed the location for a line that the doctors need to put in if they can't get it into the other locations that they will try (just had the nurse looking after him pop in as I type this to let me know that it went fine and that they will be moving his bed from the room he's in to the main ward area). This line will allow them to feed him a substance called TPN which he had when he underwent his bone marrow transplant. TPN is a substance that will provide him with nutrition while allowing his body to recover from all the poking and prodding that it underwent during surgery.
He still has a way to go, his blood pressure needs to be brought up and his heartrate down (at the moment its at the level for someone doing physical exercise but they want it to be more at a resting level. All of this is a careful balancing act. As you adjust one thing to get it sorted something else changes.
He is either so used to all of the things that they are doing that he doesn't need them to explain them more than once or he is do fed up that he just doesn't want to know any more. Will ask when he's feeling up to chatting more.
One thing that we know is that, if not while on ICU then when on a normal ward, he will be able to access the Internet and Facebook so stay tuned for him getting in touch soon.

Day 2 in somewhere

This post is going to be quite long and will go into a lot of detail. Its a record of yesterday's events and was written over the course of the day. You can skip this one if you like as we've also done a much simpler update about how Rhys has gotten on with the latest on him.

10:00am
This morning has been challenging so far.
So that Rhys could have breakfast before coming into hospital (toast and hot chocolate) we were up at 6am, despite Rhys trying to catch a couple of extra hours sleep by putting the clock back 2 hours.
Breakfast was done and dusted by 6:30 and then it was time for a quick game of pool with Mum.
We'd been told to ring the hospital before we set off to confirm that there was a bed on Ward 35 for him. The first phone call resulted in us being told that there wasn't a bed on Ward 35 but that they were going to try and get Rhys onto Ward 36. However, we would have to ring back at 7:30 as the staff on Ward 36 that could confirm that a bed was available wouldn't have started their shift.
7:30 and we rung again. After two phone calls and twenty minutes on the phone we found out that Rhys had a bed on Ward 37, the renal ward.
Arriving on the ward Rhys was put into the care of a bubbly, young nurse.
So now we wait for all of the doctors that need to come see him before surgery to arrive.
We have been told that Rhys will be going to PICU (the intensive care unit) after surgery and not onto a ward. From what we've experienced with getting a bed this morning its probably the only place that has a bed available.

1:35pm
Surgeon and anesthetist have been to see us. I missed the chat with the surgeon but was there for the latter.
I almost passed out when the anesthetist was talking to us. Rhys and Tracey were fine during all the medical discussions.
Rhys is definitely going to ICU as they may decide to keep him unconscious overnight or for a few days. He is going to have quite a few tubes in and it looks like he will be having an epidural to help with pain relief.
We'll be seeing the surgeon after the operation which may take 4 hours or could be 6, in the words of the surgeon it will take as long as it takes.The rest of today is going to be one of the most anxious and stressful we've experienced since Rhys was first diagnosed with Leukaemia.

3:00pm
Rhys went down for surgery around 2:30.
There's not much space in the room that they take you into in order to put you under so Rhys' had to choose who he wanted to go in with him, he chose Mum.
Being the seasoned pro he his when it comes to operations he let them put in a canula in the back of one hand, attach the temperature sensor to a finger on the other hand but when asked if he wanted to hold the oxygen mask over his mouth said that they could do that.
Leaving him in the hospitals capable hands we've gone out to get something to eat before heading up to CLIC House for a couple of hours to charge up phones before returning to the hospital.
The hospital have our mobile numbers to keep us updated. So far we've had one call from the surgeon to tell us that now Rhys'  unconscious his stomach muscles have relaxed and they can feel the tumour better, so they have changed the incision that they are going to use from a midline one to one that goes underneath the ribcage. The surgeon wanted to let us know of the change of plans so that we wouldn't be surprised when we see him in ICU.

8:30pm
Still waiting for Rhys to come up from the operation. We're sat in the parents room on ICU.
The operation was going well but they were going carefully. We'd been wondering what was going on so rang ward 37. As a result the anesthetist rang us back to let us know what was happening.
Not much that we can do at the moment but just wait. Its been 6 hours since we saw Rhys off for surgery. We'd been warned the operation would take as long as it takes but it still leaves you frustrated and a little anxious.

11:15pm
Have spoken with the surgeon. Rhys will be coming up from theatre shortly and after they have got him settled in we'll be able to see him.
The operation has been successful. Mr Rodgers managed to remove the whole tumour, something that might not have happened if it had been another surgeon. Thankfully we had the best.
Its not been an easy operation. The tumour was huge, think of a Galia melon and you'll have an idea of how big. It was very close to the spine and some of the major arteries in the body. Getting to it to remove it was also tricky. At one point Rhys' blood pressure dropped to 40 but a transfusion of 3 units of blood helped to remedy that.
Rhys almost had to have one of his kidneys removed but thankfully they were able to avoid that so he still has two.
Its been a long and stressful day for us but without a doubt even more so for Mr Rodgers and his team.
Words cannot express how relieved we are for what they have done.

Rhys is far from out of the woods, there are still things that could complicate his recovery, but we can just about see the treeline.

And so with that its time to bring what has been the longest day ever for all of us.

Tuesday 8am
Rhys had a restful night, he slept on and off.
We were eventually able to see him in ICU at about 12:30 this morning. He was conscious and able to recognise us. He was also able to speak a little. He has a feeding tube in his nostril, other tubes and monitors are connect to other parts of his body,. He was aware that they had been going to remove his kidney. Not sure how he knows. We were able to reassure him that the tumour has been removed.
After everything he and we have been through over the years seeing him in ICU like that was probably the hardest thing we've gone through.
After yesterday, I know that if I ever find myself having a crisis of faith then I simply have to look at Rhys to know that there is a God, or higher being - whatever people's own faith dictates, and that prayers do get answered.

Rhys' Operation

This is the shorter version of yesterday and the latest we know.
Rhys went into hospital for 8am. The operation was scheduled for 1:30 but it was after 2 before he went to theatre.
The operation took a lot longer than anyone expected, it was 8 hours later before we saw the surgeon. Lots of other surgeons would have decided not to removed the tumour after seeing the scale of what they were dealing with.
The tumour was close to major arteries, the spine, very difficult to get to to remove and almost resulted in them having to remove one of his kidneys. Rhys also had to have 3 units (pints) of blood.
Words cannot adequately express how Mr Rodgers and his team performed. When we saw him late last night he was exhausted.
Rhys was awake, able to recognise us and speak a little when we saw him in ICU. He's attached to lots of tubes and monitors and still has a way to go but its looking good.
We've spoken with the hospital this morning and he had a restful night, he slept on and off.  If he continues to make a good recovery then he may, if they can find him a bed, get moved from from ICU to a ward.

Time for something musical

Thought it was about time to come up with a song post and this mornings events have inspired me.
Read (or sing if you perfer) the following to the tune of Somewhere over the Rainbow. Apologies in advance to Stothart, Arlen and Harburg.

Somewhere in the Hospital
Know not where,
Is a bed that I dream of
For me to sleep tonight.

One day I'll know just where to go
To get a good nights sleep, tonight.
Their bound to tell me.

Somewhere in the Hospital
Know not where,
Is a bed that I dream of
For me to sleep tonight.

Day 1 in the CLIC House

Well here we are, just after 10pm at CLIC House. There's only a couple of families staying here at the moment. So far we've seen one of them.
Tomorrow is an early start in order to get into the hospital for 8am.
Cases and bags are sorted ready for the morning.
Rhys has managed to get a few games in on the pool table. Its been one thing he's been looking forward to since he knew that we were going to stay here.

Back to school - Not!

Thursday was the first day back to school after the Easter holidays. Having discussed things with Rhys' school the day before we were all ready to send him off to school.

7am Thursday morning and it was time to get him out of bed. Light on, pull the covers from over his head and then start to wonder why there was blood on his pillow.  No obvious sign of blood but then we found traces in one of his nostrils. Still the nosebleed had stopped of its own accord so it was get ready for school.

Up, washed and dressed, time for breakfast. Now things start to change. A pain in the side, aching legs. OK, paracetamol can deal with that. Two 6ml syringes of liquid paracetamol to dull the pain but now there's a feeling of wanting to be sick. Looking washed out. No school for you young man. A day of rest and being watched to make sure your OK is called for. A day of rest? Ha!

Its been over a week since the biopsy and after being told that Rhys needed tests it was time to ring Bristol and find out what was happening. After ringing the Switchboard and getting through to Ward 34, where he was last week, then ringing Oncology Daybeds with no response we were eventually rung by the hospital themselves because they'd been asked to arrange a CT scan for Rhys. As we'd been told that they wanted to do a number of tests it was time to speak to the consultant himself so that we weren't making multiple trips to Bristol.

With Rhys being unwell we'd let Yeovil hospital know about the nosebleed and the pains. While talking to the oncology secretary in Bristol we received a call from Yeovil asking us to bring Rhys in to be checked out.

Still unsure about what was happening with regards to Bristol we turned up at Ward 10 for him to be examined and were pointed in the direction of the Rainbow room, somewhere that Rhys is very familiar with.. Shortly after arriving though Chris, his consultant, came into the room and told us that Bristol had rung him and asked that he sort out some scans.

First up was a bone density scan to check the state of his bones. With that out of the way in the morning, the afternoon was a CT scan. As usual Rhys took all of these in his stride.

With the scans out of the way the doctors confirmed that Rhys would be staying in hospital overnight.

Sausage and chips for dinner and a promise of a trip to McDonalds or Burger King when he is fit and well again and eventually it was time to leave him in the care of the nurses and make our way home.

Of course with use out of the way it was time to take advantage of a room with a large screen TV and a choice of DVDs and a Harry Potter film rounded off his day. Well I'll say day as from the texts we received it was 11pm before he switched off his phone and hopefully got some sleep.

Friday was a much simpler day with his consultant telling us the results of his tests.

The CT scan was OK, the bone density scan has been a bit more tricky as the hospital aren't able to produce a report for it because they tend to deal with older people, as a result they are able to produce reports for them but don't have the ability to do the same for younger people. Bristol, however, do have that ability so the results will be looked at by Bristol and they will produce a report.

His blood tests were all OK, the one exception (which isn't a huge problem at the moment) was his neutrophil count which was a bit on the low side. Its still nothing to really worry about.

By lunchtime Rhys had been discharged and was able to return home. Its only a temporary release from hospital however, as on Monday he goes into the Children's hospital in Bristol for surgery to remove the tumour. We've been told that the operation will take about 4 hours. The surgeon's list for the afternoon has been cleared so by the end of Monday Rhys will be free from the tumour and will have started recovering so that he can return home to Yeovil as soon as he's fit and well.
 

Where the Streets are made of Shops

Wednesday saw an impromptu trip to Clarks Village in Street to try and see off the Welsh hordes that had descended on the town.

Well, when I say hordes I mean a bus load of them.

More specifically we'd popped over from Yeovil to surprise Nanny and Grampy who had come down from their home in Merthyr Tydfil on a coach trip. As much as they wanted to see Rhys we didn't let them know that we'd be coming over, although Nanny did think that we'd come over if we could.

As much as it would have been nice to spend the whole afternoon with them, a last minute visit to the school to discuss Rhys' GCSEs in the light of the up-coming tests and surgery, meant that we managed to get to Street just after half past three.

Rhys sent a text to Nanny asking where she was and while waiting for a reply we started to wander through Clarks Village hoping to bump into them.

Its amazing just how many people look like Grampy. Within the first couple of minutes we spotted about half a dozen people who, from a distance, we thought were Grampy but weren't.

Finally as we were making our way through the newer part of the Village we spotted two figure walking towards us. It was Nanny and Grampy.

We had no chance to surprise them as Grampy spotted Rhys and pointed him out to Nanny.

Wandering around Clarks Village for the next half an hour we chatted while also slowly making our way back to where their coach was waiting. It was lovely to see them both, and it was great for them to see Rhys and reassure themselves that he looked well.

All too soon though it was time for them to board their coach and with 5 minutes to go before the time they were due to leave, and with everyone on the coach, the driver closed the bus door, reversed out of the parking space and headed off back to Wales. We waved to each other as they left but will see them before too long, just as soon as Rhys has had his surgery, because they are going to come visit him in hospital.

Our own trip back home didn't take too long.

Chicken Enchiladas for dinner followed by the first episode of Season 5 of Warehouse 13 and the latest episode of Elementary rounded off a tiring day.

The Easter holidays have now finished and its time to head back to school and the last few weeks of learning before the GCSEs examinations start and Rhys' time at school draws to an end and a new chapter starts in September at college.

Getting Started

During 2008 Rhys underwent a bone marrow transplant at Bristol Children's Hospital in order to finally deal with the Acute Lymphoblastic Leukaemia that has plagued him since 2000. To allow family and friends to follow what was happening and to keep in touch with him we started the original Rhys' Treatment Blog (go here to get started with it).

Over the years since there have been a few blips but nothing serious.

Rhys has gone through secondary school and in May his GCSEs are due to start. In September he hopes to go on to college and study childcare, he's a natural with children and they seem to like him.

Several months ago Rhys pointed out to us that one of his feet seemed to be colder than the other. We checked and this was indeed the case. After checking with the doctors various scans and tests were performed which led to us discovering that there was a problem with the blood flow to his leg, it was a bit slower than would normally be expected.

Several weeks ago Rhys complained that his back was hurting. We took him to the doctors and a pulled muscle was thought to be the problem. Rest and then a staggered return to all the activities he was doing (bacon sarnie eating (oops I mean ten pin bowling), life saving, badminton and going to the gym) was suggested. After a few weeks of rest Rhys' back was better and he returned to bowling. By this time, however, the hospital had organised a MRI scan of his back to make sure that there weren't any other problems causing the pain. It was during this scan that a shadow was observed in the abdomen area was spotted. Further scans were requested by hospital.

The first of these was an ultrasound. When he's had ultrasounds in the past its normally been done by a radiographer. On this case it was a doctor that performed the scan. By the end of the appointment Rhys' abdomen had been thoroughly checked and we were informed that the shadow was a solid mass of some sort, not fluid filled but with a blood flow through it. Fortunately it didn't seem to be attached to any organs. Especially the kidney it was near. It wasn't possible to tell what type of mass it was so we had to wait for a MRI scan which would tell us more.

The MRI followed a few days later. After the scan had been completed we went to see the consultant that looks after Rhys at our local hospital. He checked the results of the scan and told us that it was some form of tumour but a biopsy would be needed to identify what it was.

The plan was for him to go to the Bristol Children's Hospital and have the biopsy. We'd be told when but there wasn't any problems with him going away to his Aunt's as planned.

Rhys headed off to the Cotswolds on the Sunday after the MRI, on the Monday we had a phone call informing us that he had to go into hospital the following day for a few more tests and then to have the biopsy on the Wednesday.

For most people this wouldn't be a problem but in this case the trip to Bristol would mean driving on the M4 and M32 motorways, something that Tracey hadn't done a lot of. Although a nerve-wracking experience she did brilliantly and they managed to get to the hospital, via his Great Aunt and Uncle's home.

Wednesday saw the biopsy and it was hoped that Rhys would be able to go home the same day if he was feeling up to it.

The procedure went without any problems but as whatever painkillers he had been given, while under the general anesthetic, began to wear off he was in a lot of pain, far more than he should have been.

More painkillers were administered and it was agreed that Rhys should stay in overnight while the doctors got the pain under control.

During the evening Rhys got worse and so it turned out to be a good idea that he had stayed in.

Thursday dawned and the efforts to get the pain under control and to get Rhys eating and moving about continued. It was slow progress.

Late Thursday afternoon, early evening one of the consultants wanted to have a word with us because some of the results had come back and they wanted to look at further tests. Both Tracey and I were told separately, Tracey because she was in Bristol with him and me because I was at home and wanted to know before she was told in case it was really bad news. Unfortunately that didn't happen and she found out before me.

We'd planned to tell Rhys the following morning when I went up to collect them but while Tracey and I were talking on the phone about it Rhys sent me a text to ask if I'd spoken with the consultant. So Tracey and the consultant explained what the test results had shown and what the plan was for the future.

Now you're going to what the result of the biopsy was.

Rhys' tumour was cancerous, something we'd hoped it wouldn't be but had feared it would. Fortunately it wasn't anything to do with his Leukaemia. In fact it has to do with another condition that he has, Neurofibromatosis. Rhys has been diagnosed with something called a malignant peripheral nerve sheath tumour (also Malignant Schwannoma, Neurofibrosarcoma or Neurosarcoma) Cancer Research UK have a page with information about it here. This is a type of cancer has links to Neurofibromatosis and so was always something that there was a risk he could suffer from during his lifetime, especially given his passed history.

The plan of action for the coming weeks is to return to Bristol for further tests including scans, testing of his bone marrow and blood. All of these are designed to confirm that there are no other tumours that have been missed.

One the tests have been completed and its been confirmed that this is the only tumour then Rhys will undergo surgery with the intention of removing the whole tumour from his abdomen. The surgeon performing the operation does this type of procedure on a moderately regular basis so Rhys is in safe hands.

Assuming that all of the tumour can be removed then Rhys shouldn't have to have any further treatment and this will be a rather short blog, something that we all hope is the case.

If the surgery does not result in all of the tumour being removed its not the end of the world as Rhys can undergo radiotherapy to kill off anything that remains.

So as much as this wasn't news we ever wanted to hear its not uncharted territory and we have a clear path ahead of us.

And finally, one thing for Rhys when he reads this.

Two treatment blogs is quite enough thank you. As much as I enjoy blogging about your little escapades can we make it something exciting but less stressful for everyone next time, maybe deep sea shark wrestling or something.