Soldato
Time for an update!
Sorry it’s a new thread, didn’t know stuff here only lasted a month / Doh!, I’ll try to keep it going this time!
Was going to do this a couple of weeks back, but I’ll get to that later.
To put it quickly, jay is still doing really well, and still at low risk, which as ever, we hope continues!
*edit*
** for those new to this, Jay(6, number 1 son), was diagnosed with Leukeamia, early december 2004**
A number of weeks ago, jay went back to school for the first time since diagnosis. Everyone spoke to him and were very pleased to see him again!, the purely genuine welcomes from all the children were very warming for us to witness.
The first day we said to Jay, that he only need go for a short time, see how he got on, he was getting a bit overwhelmed by it all, so I took him into his class. He had some tesco’s and Sainsbury’s tokens to give, his teacher asked if anyone would like to show Jay where the box was in the school, they all put their hands up, so he did that and came back, and started to get a bit teary, his teacher gave him a cuddle, I had to leave, so I told him I was very proud of him, kissed him on the head and left. I got a call from the reception that he’d settled in well and was fine, we’d said that if he wanted he could come home at first break, we got a call from his teacher then, she told us he was having a whale of a time, and wanted to stay, she let Jay say hello, he said he was fine and having a good time, sam went to get him at diner time, we decided ½ day was enough for now, as we didn’t want to wear him out, she almost had to pull Jay out of the school!.
Jay only did another couple of days, until he had to stop. He had just started his 2nd big block of chemo, and it had hit his blood levels and made him neutropenic (very very open to bugs!)so being in particularly crowded places should be avoided. Jay’s having a transfusion as I type! , this isn’t a huge problem, we just have to be careful. Tomorrow is the start of the last week of this block so should be able to return to school in a week or so + I can take him to see star wars!
Jay is part of a clinical trial, and this, his 2nd block, may be the last big block he has ( the 1st block was started imediatley after diagnosis ), part of the trial if he is randomly picked is to loose one of the blocks, so then we have 2 years of ‘maintanance’ chemo, not as intense, and so hopefully a bit of normality will return!, if jay has a 3rd, it will be around August September time.
We all went up in a helicopter the last bank holiday, there was a steam / historical vehicle show locally, a chopper was there so we thought we’d go for a spin !, Jay loved it, Lewis did too after a minute or two of tears ended!, he was thrilled by the tiny cars, cows and houses, a toy helicopter was the No.1 toy for ages!
Things were ticking along quite nicely until 10pm Tuesday 10th, when I got a call from mums friend, saying my brother had a bike accident on the way back home from work, and was at Bedford with a head injury.
I went to Bedford hospital and was met by police family liaison officer, who informed he that Bro had sustained a serious head injury, he took me upto critical care, were I met up with mum, her friend, mums sis & sis’s hubby. We shortly after had a talk with the surgeon, how told us they’d done scans and stuff, and sent them to Addenbrookes and awaited their reply, they told us he had very serious head injury + broken his neck in three places ( plus his back, it later turned out). They needed to do some stuff to him, and we could see him after that. About 2:30am we got to see him, they paralysed him, to stop him from moving, it was aweful standing there holding his hand, looking at him virtually lifeless.
They told us he would go to addenbrookes, we all left about 3am, Bro went shortly afterwards. I was supposed to be at work at 6am, didn’t make it in on time!,
I went to see him the next day, had a word with the doctor, he told me, that they have paralysed him and maintaining unconciousness, this is to help him recover, so nothing is stressed at all, and also to keep his neck / back still ( they found a fractured virtibray a day or so later).
I have never seen so many wires and tubes out of one person, the song ‘wires’ has been in my head eversince I was keeping an eye on a white number on the monitor that was his brain pressure level, a number they said was important to recovery, it’s the blood pressure difference between the brain and the heart, the number wanted to stay above 60, the lower the number the higher the pressure from the heart to the brain – causes problems! . they were expecting action a few days after the initial trauma, as that’s when the brain bruises and swells thus increasing brain pressure, when it did start swelling they used a drug to help out for a couple of days, and then on Sunday (15th) he needed an op to basically remove part of the skull to give the brain more room. He remained stable enough for them to stop the paralysing drug, so he would have reactions, I saw him the next day, he was moving his arms and more importantly legs – not paralysed, and that day had stopped his ‘sleeping’ drug.
They’d told us they can’t tell the extent of the injuries until he comes round, so they can then judge by his reactions.
Up until yestaday (sun 22nd), he still hadn’t opened his eyes / woken, and they said that then, he wasn’t really awake, he was squeezing hands, but they said it was just a reaction, and hadn’t ‘meant’ to do it.
I am going this Wednesday, it’s really painful not seeing Bro every day, first 5 days I went daily, but was too much, plus I have priorities at home, so then went every other day, but I haven’t been able to go since Saturday, I want to be there everyday but can’t.
I’m going with mum Wednesday to talk to a consultant, to try to find out what the future does/n’t hold
Jay tells people about his uncle ( he knows what happened, but not, as children don’t, the severity of the accident), makes us smile really, “he fell off his bike, bashed his head – going too fast!”, a few days after the accident he was talking to his aunty (mums sis) and said “he’s in hospital, they’re putting his brain back in !”, just as well he didn’t say that to mum at that stage, think she’d have ended up in hospital too!!. Even Lewis (2) says about it “sawn…….bike……asident!”
BTW Bro will be 40 this year, been riding all his life, bike was an R1, he always wears leathers and back protector, god only knows if he didn’t wear his back protector??
He’s a keen gamer, frequent lan sessions – think he’s/was an admin @ Fragland ?
One of the worst things about all this is, after talking to one of his close friends, they were thinking of selling the bikes, in fact his mate had sold his the Saturday before the accident. They’d said about a slight loss of confidence, and was thinking ‘time to stop’ (bro has another 2 track bikes so would have likely kept them for track days). I know you can’t live life ‘what if’, but every now and then, you can’t help think ‘if only’, but I suppose one plus point is, if it is the end, at least it happened whilst doing something he loved.
Quite funny, people at work ask, “how is he”, or “hows your kid”, now I have to reply “ which one?!”
It’s been a strange 6 months!
Keep you updated.
Sorry it’s a new thread, didn’t know stuff here only lasted a month / Doh!, I’ll try to keep it going this time!
Was going to do this a couple of weeks back, but I’ll get to that later.
To put it quickly, jay is still doing really well, and still at low risk, which as ever, we hope continues!
*edit*
** for those new to this, Jay(6, number 1 son), was diagnosed with Leukeamia, early december 2004**
A number of weeks ago, jay went back to school for the first time since diagnosis. Everyone spoke to him and were very pleased to see him again!, the purely genuine welcomes from all the children were very warming for us to witness.
The first day we said to Jay, that he only need go for a short time, see how he got on, he was getting a bit overwhelmed by it all, so I took him into his class. He had some tesco’s and Sainsbury’s tokens to give, his teacher asked if anyone would like to show Jay where the box was in the school, they all put their hands up, so he did that and came back, and started to get a bit teary, his teacher gave him a cuddle, I had to leave, so I told him I was very proud of him, kissed him on the head and left. I got a call from the reception that he’d settled in well and was fine, we’d said that if he wanted he could come home at first break, we got a call from his teacher then, she told us he was having a whale of a time, and wanted to stay, she let Jay say hello, he said he was fine and having a good time, sam went to get him at diner time, we decided ½ day was enough for now, as we didn’t want to wear him out, she almost had to pull Jay out of the school!.
Jay only did another couple of days, until he had to stop. He had just started his 2nd big block of chemo, and it had hit his blood levels and made him neutropenic (very very open to bugs!)so being in particularly crowded places should be avoided. Jay’s having a transfusion as I type! , this isn’t a huge problem, we just have to be careful. Tomorrow is the start of the last week of this block so should be able to return to school in a week or so + I can take him to see star wars!
Jay is part of a clinical trial, and this, his 2nd block, may be the last big block he has ( the 1st block was started imediatley after diagnosis ), part of the trial if he is randomly picked is to loose one of the blocks, so then we have 2 years of ‘maintanance’ chemo, not as intense, and so hopefully a bit of normality will return!, if jay has a 3rd, it will be around August September time.
We all went up in a helicopter the last bank holiday, there was a steam / historical vehicle show locally, a chopper was there so we thought we’d go for a spin !, Jay loved it, Lewis did too after a minute or two of tears ended!, he was thrilled by the tiny cars, cows and houses, a toy helicopter was the No.1 toy for ages!
Things were ticking along quite nicely until 10pm Tuesday 10th, when I got a call from mums friend, saying my brother had a bike accident on the way back home from work, and was at Bedford with a head injury.
I went to Bedford hospital and was met by police family liaison officer, who informed he that Bro had sustained a serious head injury, he took me upto critical care, were I met up with mum, her friend, mums sis & sis’s hubby. We shortly after had a talk with the surgeon, how told us they’d done scans and stuff, and sent them to Addenbrookes and awaited their reply, they told us he had very serious head injury + broken his neck in three places ( plus his back, it later turned out). They needed to do some stuff to him, and we could see him after that. About 2:30am we got to see him, they paralysed him, to stop him from moving, it was aweful standing there holding his hand, looking at him virtually lifeless.
They told us he would go to addenbrookes, we all left about 3am, Bro went shortly afterwards. I was supposed to be at work at 6am, didn’t make it in on time!,
I went to see him the next day, had a word with the doctor, he told me, that they have paralysed him and maintaining unconciousness, this is to help him recover, so nothing is stressed at all, and also to keep his neck / back still ( they found a fractured virtibray a day or so later).
I have never seen so many wires and tubes out of one person, the song ‘wires’ has been in my head eversince I was keeping an eye on a white number on the monitor that was his brain pressure level, a number they said was important to recovery, it’s the blood pressure difference between the brain and the heart, the number wanted to stay above 60, the lower the number the higher the pressure from the heart to the brain – causes problems! . they were expecting action a few days after the initial trauma, as that’s when the brain bruises and swells thus increasing brain pressure, when it did start swelling they used a drug to help out for a couple of days, and then on Sunday (15th) he needed an op to basically remove part of the skull to give the brain more room. He remained stable enough for them to stop the paralysing drug, so he would have reactions, I saw him the next day, he was moving his arms and more importantly legs – not paralysed, and that day had stopped his ‘sleeping’ drug.
They’d told us they can’t tell the extent of the injuries until he comes round, so they can then judge by his reactions.
Up until yestaday (sun 22nd), he still hadn’t opened his eyes / woken, and they said that then, he wasn’t really awake, he was squeezing hands, but they said it was just a reaction, and hadn’t ‘meant’ to do it.
I am going this Wednesday, it’s really painful not seeing Bro every day, first 5 days I went daily, but was too much, plus I have priorities at home, so then went every other day, but I haven’t been able to go since Saturday, I want to be there everyday but can’t.
I’m going with mum Wednesday to talk to a consultant, to try to find out what the future does/n’t hold
Jay tells people about his uncle ( he knows what happened, but not, as children don’t, the severity of the accident), makes us smile really, “he fell off his bike, bashed his head – going too fast!”, a few days after the accident he was talking to his aunty (mums sis) and said “he’s in hospital, they’re putting his brain back in !”, just as well he didn’t say that to mum at that stage, think she’d have ended up in hospital too!!. Even Lewis (2) says about it “sawn…….bike……asident!”
BTW Bro will be 40 this year, been riding all his life, bike was an R1, he always wears leathers and back protector, god only knows if he didn’t wear his back protector??
He’s a keen gamer, frequent lan sessions – think he’s/was an admin @ Fragland ?
One of the worst things about all this is, after talking to one of his close friends, they were thinking of selling the bikes, in fact his mate had sold his the Saturday before the accident. They’d said about a slight loss of confidence, and was thinking ‘time to stop’ (bro has another 2 track bikes so would have likely kept them for track days). I know you can’t live life ‘what if’, but every now and then, you can’t help think ‘if only’, but I suppose one plus point is, if it is the end, at least it happened whilst doing something he loved.
Quite funny, people at work ask, “how is he”, or “hows your kid”, now I have to reply “ which one?!”
It’s been a strange 6 months!
Keep you updated.
