Tracey asked if I'd updated the blog this week and since I hadn't I thought I had better get on with doing just that.
Last Sunday we came up to Bristol so that Rhys could be admitted to Ward 35 in preparation for his operation. He found himself in a four bed room rather than having a room to himself. This changed on Thursday when he got moved into a room in order that they could barrier nurse him due to finding out that he had C Diff, although it wasn't active fortunately.
On Monday his surgery was scheduled for between 8:30 and 8:45. The anesthetist and surgeon both popped in to see him beforehand. Sunday evening one of the doctors had put a cannula into his hands so he was all ready for going to theatre.
Tracey took Rhys down when the nurses came in and told us that they were ready for him. The operation was going to take around about 4 hours we'd been told, a lot shorter than last years marathon 8 hours.
With Rhys in theatre Tracey and I popped into Broadmead to grab some breakfast and have a wander around the shops. After popping into a couple of places I headed back to the hospital to wait rather than continue to wander aimlessly. Tracey cam back a short while after.
We sat around until we were surprised by Mr Rodgers, Rhys' surgeon, who came to tell us that Rhys was in the recovery room and that the operation had gone to plan and the tumour had been removed. It had been sent off to the pathology lab to find out whether all of the tumour had been removed or whether it was possible that some of it had been missed.
At the moment the news is that there is clean tissue all around what was removed so it looks like they have got it all. Last year the tumour went right up to the edges and there was no clean tissue so they were unsure whether everything had been removed and arranged radiotherapy to kill anything that had been missed.
It also looks like this is the same tissue as last year and not a new one.
Recovery has been slow but has been happening. Rhys has been rolling onto his side in order that the nurses can do things and to prevent bed sores. Rolling onto the side where he'd had his operation was difficult but as the week has progressed that has happened as well as being able to lift himself off the bed in order to change position and allow for washing since he can't get to the shower just yet.
Thursday and Friday saw Rhys get out of bed and walk short distances to sit in the chair. Thursday being a short sit out because it became to painful quite quickly; Friday being about 45 minutes before he decided he wanted to get into bed. Walking still needs a bit of support from another person just in case he gets wobbly and falls.
Eating has been a big issue, as usual. On Thursday he tried to eat some yoghurt and ice cream but this proved a struggle as it made him sick. However, he did manage to eat half a yoghurt over the course of an hour in the evening without being ill. Friday he managed to eat a Rich Tea biscuit but it did take all day.
The biggest issue that Rhys has had to face has been pain control. When he returned from surgery they had inserted an epidural. This kept his pain levels down but when he was rolling from his back to his side started to lose its effectiveness as the drugs went to the opposite side to where they had operated. This drove his pain upwards. The first time that this happened they on-call anesthetist ended up giving him Tramadol which eased things.
Wednesday evening the same thing happened but was much worse. Before Rhys' pain was once more under control 3 hours would pass. 3 hours in which his pain levels were off the chart. 3 hours during which he was brought to tears by the pain racking his body. Earlier he had had two cannula removed and a new one inserted. While he was in agony the doctor had to insert a new cannula which she managed first time, with Rhys holding his arm still to allow her to do it. An amazing feat considering.
Eventually the anesthetist turned up and it was decided that Rhys' epidural had failed and so he was switched to a morphine syringe pump, with a patient controlled button for extra shots when he needed it. Morphine was injected prior to the pump being attached and Rhys' pain dropped considerably, ending up at a very low level by the time the pump was connected. With the morphine connected the epidural was removed as it was of no use.
Thursday the pain team swapped the morphine over to Tramadol but after Rhys sat in the chair it was decided that he needed to go back on the morphine.
On Friday they once again swapped from morphine to Tramadol but this time with it being prescribed for more frequent use. His pain levels seemed to be ok, even after sitting out.
On Friday another cannula failed, leaving him with just one available for use.
As I mentioned earlier eating has been a big issue. On Friday Rhys started on TPN, a nutritional feed that he has had before when in hospital. Those of you that followed the transplant blog might remember the Gammon and chips, Chicken Tikka and Apple Crumble Pie that we used to make the TPN sound better. Last night Rhys was on Mixed Grill with Chicken Tikka Massala. Not being able to eat is going to be the factor that determines when he gets discharged. He's started to get mobile and the more he does the quicker he'll be ready to go home. Other things that he needs to do in order to be discharged he's already done. That just leaves eating and until he is eating what for him is normal then he's not going to be going far.
Friday also saw a visit from one of the neurosurgeons. This time the one that referred Rhys to the Eye Hospital for tests the other week. We discussed the surgery required to remove the meningioma. This has been postponed until Rhys has recovered from his current surgery but everything is in place. The people required have been identified and informed. The replacement for the area of his forehead has already been made based on scans that have been done of Rhys' skull. We're not sure but the replacement is either going to be ceramic or titanium.
The surgery itself is going to be the longest that Rhys has ever undergone. When I asked the neurosurgeon he said that Rhys would probably go into surgery at 9am and the operation would be finished by 7pm, a whopping 10 hours; 2 hours longer than last year's operation. Of course it could be quicker but it is going to be complicated surgery and more extensive that we originally understood.
Rhys should be in hospital for about 5 days, according to the surgeon. Yeah, really! This is Rhys we're talking about. Recovery at home afterwards will be a couple of weeks, with no heading of footballs allowed.
There's still a long way to go with all of this, but we are getting there and Rhys is on the road to being well again.
Thanks to everyone who has commented on our updates on Facebook. We really do appreciate you keeping us in your thoughts and prayers.
Friday, 17 July 2015
Saturday, 11 July 2015
Can't Stomach This
When Rhys' meningioma operation was cancelled we knew that we'd be back in Bristol with 30 days.
Just over 2 weeks ago Rhys had a MRI scan on his stomach as follow up for the Peripheral Nerve Sheaf Tumour he had removed last year.
Last Monday we received a phone call asking us to go into the hospital to see Rhys' consultant. The results of the scan had been reviewed by Bristol and the report had come back.
Chris told us that they had found a tumour, about an inch long, that needed to be removed and takes priority over the meningioma.
In the middle of the week we received a phone call from Bristol Children's Hospital with details about when Rhys would be admitted to the hospital and have his operation.
Today we have to go up to Bristol. Rhys has to be on Ward 35, which he likes the idea of, by 6pm. Once again we're staying at Sam's House.
Rhys' operation is scheduled for sometime tomorrow, at the moment we don't know what time but if last year's experience is anything to go by his surgeon will most likely want to get as early a start as possible.
At the moment we don't know what the follow-up to the surgery will be. Radiotherapy? Not sure.
Like last year we'll post updates as and when we can both here and on Facebook.
Just over 2 weeks ago Rhys had a MRI scan on his stomach as follow up for the Peripheral Nerve Sheaf Tumour he had removed last year.
Last Monday we received a phone call asking us to go into the hospital to see Rhys' consultant. The results of the scan had been reviewed by Bristol and the report had come back.
Chris told us that they had found a tumour, about an inch long, that needed to be removed and takes priority over the meningioma.
In the middle of the week we received a phone call from Bristol Children's Hospital with details about when Rhys would be admitted to the hospital and have his operation.
Today we have to go up to Bristol. Rhys has to be on Ward 35, which he likes the idea of, by 6pm. Once again we're staying at Sam's House.
Rhys' operation is scheduled for sometime tomorrow, at the moment we don't know what time but if last year's experience is anything to go by his surgeon will most likely want to get as early a start as possible.
At the moment we don't know what the follow-up to the surgery will be. Radiotherapy? Not sure.
Like last year we'll post updates as and when we can both here and on Facebook.
Friday, 19 June 2015
Home Again!
Well that worked out well.
Tracey and Rhys made their way into Ward 38 for 7:30am and sat in the playroom waiting to find out if a bed was available.
After a while the anesthetist arrived and went over everything with him. They then had to wait for Mr Edwards the surgeon.
At 9 I arrived in the hospital and found them still waiting. Another family were also waiting for a bed.
Tracey nipped out to get some breakfast while Rhys and I sat there.
The play specialist arrived and began tidying the room. As Rhys is interested in becoming a play specialist in the future they chatted about what he's doing and what he needs to do to become one.
Tracey returned and it was my turn to grab some breakfast.
As I was on my way back Tracey texted me to let me know that Mr Edwards had been in and that Rhys' operation was cancelled. There were no beds available due to the hospital being bust and there being a lot of emergency admissions. It would also take a number of hours to perform Rhys' operation so it was better to cancel and reschedule.
The operation has to be performed within 30 days of being cancelled it seems and due to the amount of time needed to complete it is likely to be at least 2 weeks away.
Its frustrating for all of us. Making arrangements for time off work, rearranging appointments, arranging accommodation, traveling to and from Bristol, preparing for serious surgery and then for it not to happen.
But we're back home and just have to wait until the new appointment comes through.
Tracey and Rhys made their way into Ward 38 for 7:30am and sat in the playroom waiting to find out if a bed was available.
After a while the anesthetist arrived and went over everything with him. They then had to wait for Mr Edwards the surgeon.
At 9 I arrived in the hospital and found them still waiting. Another family were also waiting for a bed.
Tracey nipped out to get some breakfast while Rhys and I sat there.
The play specialist arrived and began tidying the room. As Rhys is interested in becoming a play specialist in the future they chatted about what he's doing and what he needs to do to become one.
Tracey returned and it was my turn to grab some breakfast.
As I was on my way back Tracey texted me to let me know that Mr Edwards had been in and that Rhys' operation was cancelled. There were no beds available due to the hospital being bust and there being a lot of emergency admissions. It would also take a number of hours to perform Rhys' operation so it was better to cancel and reschedule.
The operation has to be performed within 30 days of being cancelled it seems and due to the amount of time needed to complete it is likely to be at least 2 weeks away.
Its frustrating for all of us. Making arrangements for time off work, rearranging appointments, arranging accommodation, traveling to and from Bristol, preparing for serious surgery and then for it not to happen.
But we're back home and just have to wait until the new appointment comes through.
Wednesday, 17 June 2015
Here we go again!
Back in Bristol so that Rhys can have the operations to remove the meningioma.
What a day its been!
Tracey drove us from Yeovil to Bristol. A nice steady trip and something she'd not done before.
After having got up very early it was a race between Rhys and I to see who could doze off the quickest so that the other would have to act has "second SatNav".
Naturally the teenager won!
A short visit with Rhys' Great Uncle Bulgaria and it was time to head for the hospital.
A change of driver and it was time for me to get us across Bristol to Sam's House.
A short, and amazingly quiet drive later and we were unpacking the car and putting our things into, yes you've guessed it, Room 10. The one we've stayed in on out last few trips to Bristol (bone marrow transplant, surgery to remove the tumour and radiotherapy after the tumour had been removed).
Having unpacked we made our way into town to grab a bite to eat at Tracey's favourite pub, Rhys' too!
Lunch over Tracey and Rhys made their way to the hospital as he had an appointment for a CT scan at 3pm. I caught up with them just as he'd finished.
Returning to the X-Ray department reception we discovered the MRI scan he also needed would be delayed due to an emergency. With that in mind we decided to pop to Ward 38 where he was supposed to be admitted and see if they had a bed for him. We'd tried to confirm that there was a bed for him, something we'd done several times over the course of the day. Unfortunately we had no luck and so Rhys and I returned to the X-Ray department while Tracey waited on the ward to find out what was happening.
Rhys' scan was delayed for ages and it was after 5pm before we found ourselves in the room with the MRI scanner, Rhys inside the machines and me at the foot of it watching him.
It is a really boring experience just watching so it must be even worse if you are having the scan and have to lie perfectly still.
Prior to the scan Rhys had bloods taken. The nurse that came do them looked at us and asked if he'd been on one of the wards at Frenchay. Rhys was so little at the time that he wouldn't remember it clearly but I said "yes, to have his tonsils removed." After all these years she remembered us.
Returning to Ward 38 we sat around for some time until a nurse confirmed that there were no beds available and he would have to go to Sam's. We would have to ring the people that deal with allocation of beds at 6:30am on Thursday morning to see where they had a bed available for him.
Another early morning!
Leaving the hospital we returned to Sam's and had a bite to eat. Rhys, as he does when we stay here, disappeared to the teenagers' room to play pool, something he thoroughly enjoys doing when we are here, or at CLIC House.
Tracey spent a bit of time when we arrived at Sam's catching up with how various people were. Lots were doing OK, but as we have experienced far too many time over the years, a number have sadly passed away, their illnesses having directly been the cause or having allowed something else to do that job.
As I sit writing this the only sounds are from the various fridge/freezers, the click of pool balls hitting each other and the clunk of balls falling in pockets. Oh, and Tracey and Rhys chatting. All else is quiet.
Thursday morning update: We rung about a bed just after 6:30. There are still no beds available, its hoped that when day surgery opens they will be able to get Rhys a bed in there. In the meantime Rhys and Tracey have to go to Ward 38 for 7:30 and wait around in the playroom until something is sorted. We think that Rhys will be going into the High Dependency Unit following surgery so he should at least have a bed there until they can sort out a bed on another ward.
So with a click of my fingers I'll sign off for now, further updates in due course.
Edited: because my proofreaders spotted two tiny mistakes. Huh!!!
What a day its been!
Tracey drove us from Yeovil to Bristol. A nice steady trip and something she'd not done before.
After having got up very early it was a race between Rhys and I to see who could doze off the quickest so that the other would have to act has "second SatNav".
Naturally the teenager won!
A short visit with Rhys' Great Uncle Bulgaria and it was time to head for the hospital.
A change of driver and it was time for me to get us across Bristol to Sam's House.
A short, and amazingly quiet drive later and we were unpacking the car and putting our things into, yes you've guessed it, Room 10. The one we've stayed in on out last few trips to Bristol (bone marrow transplant, surgery to remove the tumour and radiotherapy after the tumour had been removed).
Having unpacked we made our way into town to grab a bite to eat at Tracey's favourite pub, Rhys' too!
Lunch over Tracey and Rhys made their way to the hospital as he had an appointment for a CT scan at 3pm. I caught up with them just as he'd finished.
Returning to the X-Ray department reception we discovered the MRI scan he also needed would be delayed due to an emergency. With that in mind we decided to pop to Ward 38 where he was supposed to be admitted and see if they had a bed for him. We'd tried to confirm that there was a bed for him, something we'd done several times over the course of the day. Unfortunately we had no luck and so Rhys and I returned to the X-Ray department while Tracey waited on the ward to find out what was happening.
Rhys' scan was delayed for ages and it was after 5pm before we found ourselves in the room with the MRI scanner, Rhys inside the machines and me at the foot of it watching him.
It is a really boring experience just watching so it must be even worse if you are having the scan and have to lie perfectly still.
Prior to the scan Rhys had bloods taken. The nurse that came do them looked at us and asked if he'd been on one of the wards at Frenchay. Rhys was so little at the time that he wouldn't remember it clearly but I said "yes, to have his tonsils removed." After all these years she remembered us.
Returning to Ward 38 we sat around for some time until a nurse confirmed that there were no beds available and he would have to go to Sam's. We would have to ring the people that deal with allocation of beds at 6:30am on Thursday morning to see where they had a bed available for him.
Another early morning!
Leaving the hospital we returned to Sam's and had a bite to eat. Rhys, as he does when we stay here, disappeared to the teenagers' room to play pool, something he thoroughly enjoys doing when we are here, or at CLIC House.
Tracey spent a bit of time when we arrived at Sam's catching up with how various people were. Lots were doing OK, but as we have experienced far too many time over the years, a number have sadly passed away, their illnesses having directly been the cause or having allowed something else to do that job.
As I sit writing this the only sounds are from the various fridge/freezers, the click of pool balls hitting each other and the clunk of balls falling in pockets. Oh, and Tracey and Rhys chatting. All else is quiet.
Thursday morning update: We rung about a bed just after 6:30. There are still no beds available, its hoped that when day surgery opens they will be able to get Rhys a bed in there. In the meantime Rhys and Tracey have to go to Ward 38 for 7:30 and wait around in the playroom until something is sorted. We think that Rhys will be going into the High Dependency Unit following surgery so he should at least have a bed there until they can sort out a bed on another ward.
So with a click of my fingers I'll sign off for now, further updates in due course.
Edited: because my proofreaders spotted two tiny mistakes. Huh!!!
Sunday, 24 August 2014
Home Run
So 6 weeks of radiotherapy have come to an end. Bags and cases packed and placed in the car. Room cleared out.
Goodbyes said to all the people we've got to know, adults and youngsters alike. Staff and residents both.
One more drive from Bristol to Yeovil and its finally time to rest and to have a proper summer break before started at college.
Goodbyes said to all the people we've got to know, adults and youngsters alike. Staff and residents both.
One more drive from Bristol to Yeovil and its finally time to rest and to have a proper summer break before started at college.
Sunday, 3 August 2014
We're all going to the Zoo
Bristol Zoo exactly.
Last Sunday was Tracey's birthday. She had wanted to go somewhere and as Rhys' Aunty Annette and his cousin's Jess and Charlotte were down at Nanny and Grampy's it was easy to arrange for them to come over to Bristol for the day.
An early start for us from Yeovil still saw us arrive at Sam's nearly an hour after Annette and the girls.
After unpacking and grabbing a drink we piled into the cars and headed up to Clifton and Bristol Zoo.
Although there wasn't a queue outside the zoo the car park was already full by the time we arrived and so we parked up on the Downs before walking down to the Zoo. For once we had very little trouble parking.
For such a warm day it was really surprising that there wasn't that much of a queue to get in and once in the place was busy but not overly packed.
We took our time as we weren't in a hurry and by the time we had to leave had seen just over half of the animals.
We started off with the flamingos before looking for lions, who seemed to be hiding away. Fruit bats were next before we reached the reptile house via some very big tortoises and friends.
Rhys and I went in to have a look at the snakes, frogs, lizards, crocodiles and other reptiles. Everyone else went and sat on the grass to enjoy the sunshine. Can't think why!
Now I'm sure that I'll get in trouble for the next set of pictures but there are no pictures of snakes!!!
After the reptile house we visited the spiders and creepy crawlies and then the aquarium.
A bit of lunch was called for so we stopped off at the cafe and grabbed a bite to eat.
The afternoon began with monkeys. Lots of monkeys.
At one point we got separated from Rhys' Aunty and cousins. While we waited for them to find us we stopped off to listen to the talk about the lemurs. It was really crowded in the enclosure and took a while to get in and out as the doors were in an airlock type configuration where you had to close on door before the other could be opened. Stops the little rascals escaping.
Our next stop was the gorilla enclosure. At the point that we reached them they were fast asleep because of the heat. When we passed through a bit later they were moving about a bit.
The last couple of stops were the penguins and seals.
The seals were wonderful. Especially the really big one that kept barking at everyone.
Eventually it was time to start making our way to the exit as we needed to leave. Before we did we stopped to get ice-cream. Rhys and I popped to an ice-cream van to get a couple of 99s (ice cream cone with a chocolate flake for those that don't know what this is).
Rhys' cousins decided when we returned that they wanted to sample our ice-creams. After allowing Jess to have a couple of licks of mine I made the mistake of handing it to her and well...
Our trip ended with a visit to the shop to buy some souvenirs but not before we paid one last visit to the lion enclosure where there was a bit more activity.
Rhys had a lovely day with Aunty Annette and the girls. The zoo wasn't crowded so was a great place to go on a hot, sunny day.
Last Sunday was Tracey's birthday. She had wanted to go somewhere and as Rhys' Aunty Annette and his cousin's Jess and Charlotte were down at Nanny and Grampy's it was easy to arrange for them to come over to Bristol for the day.
An early start for us from Yeovil still saw us arrive at Sam's nearly an hour after Annette and the girls.
After unpacking and grabbing a drink we piled into the cars and headed up to Clifton and Bristol Zoo.
Although there wasn't a queue outside the zoo the car park was already full by the time we arrived and so we parked up on the Downs before walking down to the Zoo. For once we had very little trouble parking.
For such a warm day it was really surprising that there wasn't that much of a queue to get in and once in the place was busy but not overly packed.
We took our time as we weren't in a hurry and by the time we had to leave had seen just over half of the animals.
We started off with the flamingos before looking for lions, who seemed to be hiding away. Fruit bats were next before we reached the reptile house via some very big tortoises and friends.
Rhys and I went in to have a look at the snakes, frogs, lizards, crocodiles and other reptiles. Everyone else went and sat on the grass to enjoy the sunshine. Can't think why!
Now I'm sure that I'll get in trouble for the next set of pictures but there are no pictures of snakes!!!
After the reptile house we visited the spiders and creepy crawlies and then the aquarium.
A bit of lunch was called for so we stopped off at the cafe and grabbed a bite to eat.
The afternoon began with monkeys. Lots of monkeys.
The last couple of stops were the penguins and seals.
The seals were wonderful. Especially the really big one that kept barking at everyone.
Eventually it was time to start making our way to the exit as we needed to leave. Before we did we stopped to get ice-cream. Rhys and I popped to an ice-cream van to get a couple of 99s (ice cream cone with a chocolate flake for those that don't know what this is).
Rhys' cousins decided when we returned that they wanted to sample our ice-creams. After allowing Jess to have a couple of licks of mine I made the mistake of handing it to her and well...
Our trip ended with a visit to the shop to buy some souvenirs but not before we paid one last visit to the lion enclosure where there was a bit more activity.
Rhys had a lovely day with Aunty Annette and the girls. The zoo wasn't crowded so was a great place to go on a hot, sunny day.
Friday, 25 July 2014
Week 3 of radiotherapy
Its been a while since we posted anything with regards to Rhys' treatment. We're now into the third week of radiotherapy.
On Monday we were set to come up to Bristol when we received a phone call from the radiographers to tell us that the machine had broken down and that they were cancelling appointments. Rhys will have another appointment added on at the end of the 6 weeks to make up for it. With an extra day in Yeovil we decided to spend it relaxing and doing some of the things we'd wanted to do like go to the cinema.
With the sun shining in the sky we headed to Cineworld to watch How To Train Your Dragon 2.
There were less than a dozen people at the showing we went to, not surprising as it was in the middle of the afternoon.
We enjoyed the film, Rhys liked it and thought it was better than the first, I prefer the first as there was more going on with the storyline in that one.
Tuesday we returned to Bristol. On arrival at the room we discovered a note to say that there had been a phone call letting us know the radiotherapy machine was fixed and we could come in for the appointment anyway. Oh well!
On Monday we were set to come up to Bristol when we received a phone call from the radiographers to tell us that the machine had broken down and that they were cancelling appointments. Rhys will have another appointment added on at the end of the 6 weeks to make up for it. With an extra day in Yeovil we decided to spend it relaxing and doing some of the things we'd wanted to do like go to the cinema.
With the sun shining in the sky we headed to Cineworld to watch How To Train Your Dragon 2.
There were less than a dozen people at the showing we went to, not surprising as it was in the middle of the afternoon.
We enjoyed the film, Rhys liked it and thought it was better than the first, I prefer the first as there was more going on with the storyline in that one.
Tuesday we returned to Bristol. On arrival at the room we discovered a note to say that there had been a phone call letting us know the radiotherapy machine was fixed and we could come in for the appointment anyway. Oh well!
Last weekend was incredibly stressful and heartbreaking for the family.
On Saturday we traveled to Portsmouth as Rhys' Grampa, Tracey's Dad, had been taken into hospital. We arrived at the hospital in the afternoon and went to his bed on the Medical Assessment Unit. Rhys spent a bit of time at the bedside in between going to the restaurant and for short walks with various close family members.
Eventually Rhys and I had to leave to check into a hotel for the night as it wasn't good for him to stay at the hospital overnight.
On Saturday we traveled to Portsmouth as Rhys' Grampa, Tracey's Dad, had been taken into hospital. We arrived at the hospital in the afternoon and went to his bed on the Medical Assessment Unit. Rhys spent a bit of time at the bedside in between going to the restaurant and for short walks with various close family members.
Eventually Rhys and I had to leave to check into a hotel for the night as it wasn't good for him to stay at the hospital overnight.
We rang the local Marriot, no rooms.
Then we rang Premier Inn, no rooms in Portsmouth or Petersfield but they did have a room in Aldershot, a good 30 miles from Portsmouth. Um, pass.
Finally we managed to get a room through Ibis. Since we used to live in Portsmouth and have visited there a number of times since moving to Yeovil I knew where the Ibis was. Leaving everybody else at the hospital, Rhys and I got into our car and headed south into deepest, darkest Pompey.
Pulling up at the hotel we found a parking space and went into reception.
We explained that we had a room booked and who we were. "Sorry, we've not got any reservations in that name. Could you be booked into our Ibis Budget hotel?"
Quick phone call by the receptionist and yes, we're at the wrong hotel. Back in the car and 15 minutes later we'd parked near the correct hotel and were checking in at reception.
The room was fairly basic but good enough for the two of us to get some sleep.
The following morning we checked out as early as we could and headed back to the hospital.
Tracey's Dad was still on the ward but later was moved to a private room. Rhys went in an saw him, he was quite peaceful.
We had breakfast before settling down to wait in the reception area. Every so often I'd pop to the room to see how things were or Rhys and I would go for a walk.
Eventually just before 3pm Tracey's Dad passed away. Rhys was in reception while the rest of us were in the room. It was very dignified and he will be missed so much by all of us, especially his daughters.
Rhys has been incredibly strong. Considering everything he had been through this year with biopsies, the operation to remove the tumour, knowing he has the meningioma and now the radiotherapy, he held himself together. He was also able to give comfort to the rest of us.
The coming weeks are going to be equally stressful, emotional and painful. Hopefully Rhys will continue to find the strength from wherever he finds it to get him through them.
Monday, 7 July 2014
40 something, 50 something
Rhys has his first session of radiotherapy yesterday morning and we go to see Dr Cameron about the results of the kidney scan.
We arrived at Sam's House Sunday evening and unpacked. As soon as he could Rhys disappeared to the teenager's room to play pool. He's certainly making himself at home there. We saw him on and off during the remainder of the night as he went exploring the place.
There are a lot of other family's staying at Sam's and we met a few of them in the kitchen/dining area on our floor. We only saw one child, which is different to last time we stayed there. There doesn't appear to be any other teenagers staying at Sam's so it looks like Rhys might have the teenager's room to himself.
Dr Cameron came to see us just before Rhys' had his radiotherapy and told us that the scan had shown that both Rhys' kidney's were working fine, one was functioning at 40 something percent and the other at 50 something. Although they can't guarantee the effect of the radiotherapy on the kidneys they will be using a lower dose and aiming to avoid one of the kidneys as much as possible.
The rest of the day the morning was spent wandering around Ikea and doing a food shop so that Rhys and Tracey have something to eat.
Tracey and Rhys went into Cabots Circus in the afternoon after I left to make my way home. Almost as soon as I'd left Rhys started to complain about a pain in his side and so Tracey and him ended up at Oncology Daybeds so that he could be checked over. A couple of samples to check for signs of infection and he was sent back to Sam's with some painkillers which has eased the pain by the time I spoke with them about 7.
Day 2 of radiotherapy today and hopefully Rhys will pop into Area 61, the teenage cancer unit, this afternoon and join in with their discussion group so that he has something to do otherwise this could be a long 6 weeks for him.
We arrived at Sam's House Sunday evening and unpacked. As soon as he could Rhys disappeared to the teenager's room to play pool. He's certainly making himself at home there. We saw him on and off during the remainder of the night as he went exploring the place.
There are a lot of other family's staying at Sam's and we met a few of them in the kitchen/dining area on our floor. We only saw one child, which is different to last time we stayed there. There doesn't appear to be any other teenagers staying at Sam's so it looks like Rhys might have the teenager's room to himself.
Dr Cameron came to see us just before Rhys' had his radiotherapy and told us that the scan had shown that both Rhys' kidney's were working fine, one was functioning at 40 something percent and the other at 50 something. Although they can't guarantee the effect of the radiotherapy on the kidneys they will be using a lower dose and aiming to avoid one of the kidneys as much as possible.
The rest of the day the morning was spent wandering around Ikea and doing a food shop so that Rhys and Tracey have something to eat.
Tracey and Rhys went into Cabots Circus in the afternoon after I left to make my way home. Almost as soon as I'd left Rhys started to complain about a pain in his side and so Tracey and him ended up at Oncology Daybeds so that he could be checked over. A couple of samples to check for signs of infection and he was sent back to Sam's with some painkillers which has eased the pain by the time I spoke with them about 7.
Day 2 of radiotherapy today and hopefully Rhys will pop into Area 61, the teenage cancer unit, this afternoon and join in with their discussion group so that he has something to do otherwise this could be a long 6 weeks for him.
Sunday, 6 July 2014
Time to Decamp
Suitcases are packed. Food and other necessities are in bags. Time for Rhys to head to Bristol so that he can start his radiotherapy.
Last Friday we had to go up for the planning session. All 15 minutes of it.
He had to lie on the bed while they took some measurements to make sure that everything would be lined up correctly when they start. He had at least one X-ray and then it was all done.
We were a bit frustrated because we'd expected to see the doctor but that wasn't the case.
Unfortunately that means that we still don't know what the results of the kidney scan were so we have no idea what the state of Rhys' kidneys will be at the end of the 6 weeks. The radiographer was going to contact the doctor to let her know that we wanted to speak with her. We'll be chasing that up tomorrow morning.
On Friday Tracey rang up CLIC House to confirm that we had a room and let them know that we'd be picking up the keys. She got told that although we did have a room booked that had been crossed out. Some phone calls by the staff and we found out that we were in Sam's House. The same place that we stayed when Rhys had his bone marrow transplant.
One of the staff gave us a tour so that we knew where everything was. Then she showed us to our room.
And would you believe it...
we are in the exact same room that we stayed in when he had his transplant.
6 years on and we are back in the same place. At least this time he gets to be and out and about a bit more. Who knows he might even manage to see the balloon festival and not just see the balloons flying by in the morning and evening which is what we've done every other time he's been in Bristol during treatment.
Last Friday we had to go up for the planning session. All 15 minutes of it.
He had to lie on the bed while they took some measurements to make sure that everything would be lined up correctly when they start. He had at least one X-ray and then it was all done.
We were a bit frustrated because we'd expected to see the doctor but that wasn't the case.
Unfortunately that means that we still don't know what the results of the kidney scan were so we have no idea what the state of Rhys' kidneys will be at the end of the 6 weeks. The radiographer was going to contact the doctor to let her know that we wanted to speak with her. We'll be chasing that up tomorrow morning.
On Friday Tracey rang up CLIC House to confirm that we had a room and let them know that we'd be picking up the keys. She got told that although we did have a room booked that had been crossed out. Some phone calls by the staff and we found out that we were in Sam's House. The same place that we stayed when Rhys had his bone marrow transplant.
One of the staff gave us a tour so that we knew where everything was. Then she showed us to our room.
And would you believe it...
we are in the exact same room that we stayed in when he had his transplant.
6 years on and we are back in the same place. At least this time he gets to be and out and about a bit more. Who knows he might even manage to see the balloon festival and not just see the balloons flying by in the morning and evening which is what we've done every other time he's been in Bristol during treatment.
Friday, 27 June 2014
A long, long, long day.
Up by 6am, out the door by 7am. Stuck in Glastonbury traffic by 7:30. Bliss!
That was Wednesday morning.
Fortunately we managed to get passed Shepton Mallet with its very long traffic queues and managed to make good time on the rest of our journey, arriving at the vascular clinic at Bristol Royal Infirmary with literally minutes to spare for the 9:15 appointment.
The last time we'd gone up to Bristol for an appointment we'd left at 7:30 and got to the hospital on time but with the chance to park at Cabot's Circus. Allowing an extra half an hour would be a good idea we thought and it turned out it was.
After our mad rush from the car park to the clinic we found ourselves sitting around for half an hour waiting for the doctor. With a CT Scan planned for 10am and a long walk to get to the Oncology hospital we knew we'd not be able to wait any longer so told the nurse we'd have to go. Of course she couldn't allow us to do that without the doctor's permission so we found ourselves waiting while she checked only for her to return and usher us into the doctor.
Well he was brilliant and really friendly. He examined Rhys' feet which is the reason we were there, found a strong pulse but also noted the difference in temperature. After a few more questions he told Rhys that he would arrange for a repeat of an ultrasound that Yeovil hospital had performed but this time to be done in Bristol while he is up there having his radiotherapy. Just to give Rhys something to do. He also explained that Rhys could be suffering from something called Raynaud's which affects the circulation in the hands and feet. Mr A to Z Medical Dictionary ticks off another condition!
Leaving the vascular clinic we made our way through the maze of corridors inside the BRI and arrived at the oncology hospital. Rhys' CT scan went well and he emerged from the scanner room with a series of tattoos on his stomach to allow them line up the machines when he has his radiotherapy. It was a bit disappointing that the tattoo was only tiny dots and not the full blown bowling ball and pin that we told Nanny about afterwards but you can't have everything.
After the scan Jax took Rhys up to the teenage oncology unit Area 61 and showed him around. When he's having his radiotherapy he will have access to the unit and be able to join in the activities that are put on there. If there was any worry about him spending lots of time at CLIC House playing pool then those doubts disappeared when we saw the unit. I suspect that he will be spending a lot of time there, especially since they have a table football game and a pool table. I'm beginning to think he might not want to come back home to Yeovil with all of this to look forward to.
Lunch followed at Mum's favourite pub, the Bay Horse with Rhys choosing a rather tasty burger and chips.
The trip back was a lot easier as we bypassed Glastonbury by using the motorway. It was a long day and very tiring but things are finally moving getting towards the last stages of his treatment so that he can enjoy a couple of weeks recovering from the radiotherapy before his next big adventure, college.
That was Wednesday morning.
Fortunately we managed to get passed Shepton Mallet with its very long traffic queues and managed to make good time on the rest of our journey, arriving at the vascular clinic at Bristol Royal Infirmary with literally minutes to spare for the 9:15 appointment.
The last time we'd gone up to Bristol for an appointment we'd left at 7:30 and got to the hospital on time but with the chance to park at Cabot's Circus. Allowing an extra half an hour would be a good idea we thought and it turned out it was.
After our mad rush from the car park to the clinic we found ourselves sitting around for half an hour waiting for the doctor. With a CT Scan planned for 10am and a long walk to get to the Oncology hospital we knew we'd not be able to wait any longer so told the nurse we'd have to go. Of course she couldn't allow us to do that without the doctor's permission so we found ourselves waiting while she checked only for her to return and usher us into the doctor.
Well he was brilliant and really friendly. He examined Rhys' feet which is the reason we were there, found a strong pulse but also noted the difference in temperature. After a few more questions he told Rhys that he would arrange for a repeat of an ultrasound that Yeovil hospital had performed but this time to be done in Bristol while he is up there having his radiotherapy. Just to give Rhys something to do. He also explained that Rhys could be suffering from something called Raynaud's which affects the circulation in the hands and feet. Mr A to Z Medical Dictionary ticks off another condition!
Leaving the vascular clinic we made our way through the maze of corridors inside the BRI and arrived at the oncology hospital. Rhys' CT scan went well and he emerged from the scanner room with a series of tattoos on his stomach to allow them line up the machines when he has his radiotherapy. It was a bit disappointing that the tattoo was only tiny dots and not the full blown bowling ball and pin that we told Nanny about afterwards but you can't have everything.
After the scan Jax took Rhys up to the teenage oncology unit Area 61 and showed him around. When he's having his radiotherapy he will have access to the unit and be able to join in the activities that are put on there. If there was any worry about him spending lots of time at CLIC House playing pool then those doubts disappeared when we saw the unit. I suspect that he will be spending a lot of time there, especially since they have a table football game and a pool table. I'm beginning to think he might not want to come back home to Yeovil with all of this to look forward to.
Lunch followed at Mum's favourite pub, the Bay Horse with Rhys choosing a rather tasty burger and chips.
The trip back was a lot easier as we bypassed Glastonbury by using the motorway. It was a long day and very tiring but things are finally moving getting towards the last stages of his treatment so that he can enjoy a couple of weeks recovering from the radiotherapy before his next big adventure, college.
Monday, 23 June 2014
And so it begins ...
Well the news we've been waiting for has finally arrived.
On Wednesday Rhys will be having another CT scan in preparation for starting his radiotherapy.
On July 4th, yes Independence Day in the USA, he has a radiotherapy planning appointment in Bristol and then on the 7th July will be starting his radiotherapy.
6 weeks of being zapped for a couple of minutes and several hours of playing pool each Monday to Friday.
Weekends will be spent back in Yeovil doing those things he normally does.
The 6 weeks ends just in time for him to have a couple of weeks to recover in time for the start of college.
I think he's looking forward to his time in Bristol. If the excited yelling and shouting "we're going to Bristol, we're going to Bristol" that was going on in the background when Tracey rang to let me know the news is anything to go by.
On Wednesday Rhys will be having another CT scan in preparation for starting his radiotherapy.
On July 4th, yes Independence Day in the USA, he has a radiotherapy planning appointment in Bristol and then on the 7th July will be starting his radiotherapy.
6 weeks of being zapped for a couple of minutes and several hours of playing pool each Monday to Friday.
Weekends will be spent back in Yeovil doing those things he normally does.
The 6 weeks ends just in time for him to have a couple of weeks to recover in time for the start of college.
I think he's looking forward to his time in Bristol. If the excited yelling and shouting "we're going to Bristol, we're going to Bristol" that was going on in the background when Tracey rang to let me know the news is anything to go by.
Thursday, 12 June 2014
Oops
Apparently Rhys was supposed to be in Bristol today having his kidney scan, or so the phone call this afternoon to ask us why we'd not turned up for the appointment told us.
Nothing was on the calender, nothing in diaries and no letter pinned to the noticeboard in the kitchen.
We couldn't think why we'd not heard about this appointment. Then the light went on.
While Rhys was in hospital recovering from his tumour operation and we were waiting for the results of the tests on the tumour to see if they'd got everything we had received a phone call asking us to go and see the radiotherapy consultant. We'd been puzzled by that as we'd not been told that the results had come back. At the same time we received a letter notifying us that Rhys had an appointment for a renal scan.
The letter was taken up to Bristol and we asked the nurses if they could find out why he had the appointment. We never heard any more and never saw the letter again either.
It would appear that once again the NHS was being super efficient as the letter must have been the appointment for Rhys' kidney scan which the doctors had figured out he'd need before radiotherapy could begin. This must have all been sorted out before we'd been told that he'd need radiotherapy. Not knowing what was happening at the time we dismissed the appointment as someone getting dates wrong for one of the numerous scans that he was having at the time. We know better know!
Still its not a total disaster as we have a new appointment next week and hopefully this can be combined with some of the other activities that will be needed as part of the planning for his treatment.
Nothing was on the calender, nothing in diaries and no letter pinned to the noticeboard in the kitchen.
We couldn't think why we'd not heard about this appointment. Then the light went on.
While Rhys was in hospital recovering from his tumour operation and we were waiting for the results of the tests on the tumour to see if they'd got everything we had received a phone call asking us to go and see the radiotherapy consultant. We'd been puzzled by that as we'd not been told that the results had come back. At the same time we received a letter notifying us that Rhys had an appointment for a renal scan.
The letter was taken up to Bristol and we asked the nurses if they could find out why he had the appointment. We never heard any more and never saw the letter again either.
It would appear that once again the NHS was being super efficient as the letter must have been the appointment for Rhys' kidney scan which the doctors had figured out he'd need before radiotherapy could begin. This must have all been sorted out before we'd been told that he'd need radiotherapy. Not knowing what was happening at the time we dismissed the appointment as someone getting dates wrong for one of the numerous scans that he was having at the time. We know better know!
Still its not a total disaster as we have a new appointment next week and hopefully this can be combined with some of the other activities that will be needed as part of the planning for his treatment.
Wednesday, 11 June 2014
And the future unveils itself
Today Rhys had an appointment at Yeovil hospital with Steve the consultant from Bristol that has been dealing with him and his tumours. As a result we have a clear idea of what the immediate future holds.
As the lump on his head is a meningioma there isn't an urgency to deal with it. In fact the plan for treating that is to leave it alone and just monitor it. No surgery and no radiotherapy at the moment unless further scans show that it has grown. If that is the case then it will require radiotherapy rather than surgery as the latter would require the removal of a sizeable chunk of his forehead during the operation (probably for the best really as I'm sure the temptation to ask if they could replace it with something transparent so we can make sure that his brain is still there and working at times would be far too much to resist).
The other lumps that they found inside his cheeks, the different scans he had showed things on different sides of the face and not on the same side, will also be monitored but aren't worrying anyone at the moment.
Which leaves us with the radiotherapy on his abdomen. Once he's had a kidney scan to check which of his kidneys is the best to not nuke during treatment Rhys will be beginning his 6 weeks of radiotherapy in Bristol. With luck everything, apart from the monitoring, will be done and dusted by the August so that he has a few weeks to recuperate before beginning college.
We chatted about a few other things but the most important of these is that Rhys was given the all clear to go ten pin bowling, although they didn't say that he'd be able to play brilliantly but you can't have everything!
As the lump on his head is a meningioma there isn't an urgency to deal with it. In fact the plan for treating that is to leave it alone and just monitor it. No surgery and no radiotherapy at the moment unless further scans show that it has grown. If that is the case then it will require radiotherapy rather than surgery as the latter would require the removal of a sizeable chunk of his forehead during the operation (probably for the best really as I'm sure the temptation to ask if they could replace it with something transparent so we can make sure that his brain is still there and working at times would be far too much to resist).
The other lumps that they found inside his cheeks, the different scans he had showed things on different sides of the face and not on the same side, will also be monitored but aren't worrying anyone at the moment.
Which leaves us with the radiotherapy on his abdomen. Once he's had a kidney scan to check which of his kidneys is the best to not nuke during treatment Rhys will be beginning his 6 weeks of radiotherapy in Bristol. With luck everything, apart from the monitoring, will be done and dusted by the August so that he has a few weeks to recuperate before beginning college.
We chatted about a few other things but the most important of these is that Rhys was given the all clear to go ten pin bowling, although they didn't say that he'd be able to play brilliantly but you can't have everything!
Monday, 2 June 2014
And the results are in
Yesterday we received a call from Father Christmas to tell us that the results of the biopsy were back. Why Father Christmas? Well the news was the best present we could have.
The biopsy showed that the lump on his head is a meningioma as we'd been told at first and not something worse which is what the doctors were worried it night be.
This means that we are back on track with the treatment as the radiotherapy can now go ahead. Treatment of the lump will still be needed but that can happen after the remains of the tumour in his abdomen have been dealt with. So we are looking forward to another trip to Bristol for some more scans and then Rhys can have the radiotherapy.
Once the radiotherapy is over then Rhys will have to have the lump removed and possibly some radiotherapy on his head but that it weeks away at the moment.
A little voice has just called out from their room to tell me to let you know that he's had to pop into hospital this week for some more tests to try and figure out why he's having some pains. This is something he's had for a couple of weeks now but yesterday morning also resulted in stomach pain that resulted in his sleeping on the couch from 4:30am to 8:30am because he wasn't able to sleep lying flat in bed.
The same little voice has also pointed out that he's ticked off another meal from his list. He had his chicken tikka masala yesterday evening.
The biopsy showed that the lump on his head is a meningioma as we'd been told at first and not something worse which is what the doctors were worried it night be.
This means that we are back on track with the treatment as the radiotherapy can now go ahead. Treatment of the lump will still be needed but that can happen after the remains of the tumour in his abdomen have been dealt with. So we are looking forward to another trip to Bristol for some more scans and then Rhys can have the radiotherapy.
Once the radiotherapy is over then Rhys will have to have the lump removed and possibly some radiotherapy on his head but that it weeks away at the moment.
A little voice has just called out from their room to tell me to let you know that he's had to pop into hospital this week for some more tests to try and figure out why he's having some pains. This is something he's had for a couple of weeks now but yesterday morning also resulted in stomach pain that resulted in his sleeping on the couch from 4:30am to 8:30am because he wasn't able to sleep lying flat in bed.
The same little voice has also pointed out that he's ticked off another meal from his list. He had his chicken tikka masala yesterday evening.
Saturday, 31 May 2014
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.
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.
Sunday, 25 May 2014
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.
Saturday, 24 May 2014
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.
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.
Friday, 23 May 2014
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.
"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.
Wednesday, 21 May 2014
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.
Subscribe to:
Posts (Atom)