Well, we're still at home.
Brett's consultant phoned yesterday to get us in to hospital Friday, hopefully just for a clinic appointment.
He had bloods taken from a community nurse yesterday and his line dressing changed.
He has taken over organising his meds so I am redundant from that job (not that I'm the slightest bit bothered he often gave me a hateful look when I came in with this hours pile of pills).
We don't really know what's happening next.
He is due a bone marrow test next week to show that he has achieved induction remission (fingers crossed) and then next stage of the plan will be explained to us based on those results.
So we are in the dark, not that its bothering us too much.
Any day at home is a blessing.
I am writing this blog whilst my daughter is ill on the settee with a sickness bug.
Yes I said daughter - Its so strange when she gets ill.
I have to try and remember that this bug wont kill her and that I don't need to check her temp and get her to hospital.
I am so cancer programmed that normal life now seems weird and unusual.
Brett on the other hand has gone out!!
His bloods came back so high he decided to go out and about with his cousin and close friend Emma.
He is going shopping, lunch and to see friends, and will no doubt stare-out any idiot that gawps at his bald head for too long.
I am so glad he's getting some fun in before the next stage of treatment, whatever it will be, it will be intense.
I shall now go back to emptying the sick bucket and caring for my girl...strange.
Wednesday, 25 July 2012
Sunday, 22 July 2012
Bedpan art
Waiting for discharge Poppy and I decide to conduct some bedpan art.
Her's were better.....Typical!
Her's were better.....Typical!
Going home
Eeeeppppppp!
We've just received the amazing news that we don't have a day release but a few whole days release.
Oh yes, in my house with my whole family, me, hubby Kev, Brett and Poppy.
I am so happy....and a little scared
His neutrophils are 0.6 which is very low so it will mean a lot of temperature taking and hoping there's no magic 38.0's
But I've done it before so it's not a problem.
We will receive a phone all from the consultant tomorrow (Monday) giving the details of the next part of the plan but who cares.
Going home oh yeah oh yeah oh yeah.
We've just received the amazing news that we don't have a day release but a few whole days release.
Oh yes, in my house with my whole family, me, hubby Kev, Brett and Poppy.
I am so happy....and a little scared
His neutrophils are 0.6 which is very low so it will mean a lot of temperature taking and hoping there's no magic 38.0's
But I've done it before so it's not a problem.
We will receive a phone all from the consultant tomorrow (Monday) giving the details of the next part of the plan but who cares.
Going home oh yeah oh yeah oh yeah.
Day Release
Today is the start of our 5th week in hospital.
We sit here in excited anticipation to see if we're allowed home for day release.
Brett has already planned the day:
1st round nan's for real home cooked chips.
2nd home for some tv watching and use of the home toilet!!!
3rd Chinese takeaway from his favourite restaurant before we start the trip back this evening.
Ok it's obvious that he has sat in hospital pineing for food and the home toilet.
Don't ask me? I don't know why these choices are the most important things for him on his first day out but then I've never been in hospital for 4 weeks straight.
Come on drs, it's 9.47am now, hurry up and let us go.
The clock is ticking.
We sit here in excited anticipation to see if we're allowed home for day release.
Brett has already planned the day:
1st round nan's for real home cooked chips.
2nd home for some tv watching and use of the home toilet!!!
3rd Chinese takeaway from his favourite restaurant before we start the trip back this evening.
Ok it's obvious that he has sat in hospital pineing for food and the home toilet.
Don't ask me? I don't know why these choices are the most important things for him on his first day out but then I've never been in hospital for 4 weeks straight.
Come on drs, it's 9.47am now, hurry up and let us go.
The clock is ticking.
Saturday, 21 July 2012
Neutropenic Sepsis
We are still living in hospital.
The first week of Brett's intensive chemo went well, albeit, a little too well.
Brett ended up in intensive care, he had Neutropenic Sepsis.
His chemo had made him neutropenic, which it is designed to do.
Lets face it if the chemo doesn't wipe out your blood count it probably isn't going to be getting those bastard cancer cells either.
The major problem with wiping out your blood count is that you have no immunity to anything.
The majority of infections that are picked up wouldn't touch a normal healthy person, so the mass majority of infections that Brett has had aren't even identified.
Usually the only sign of infection tends to be the temperature 'spikes' which means its gone to 38.0 or higher. You can never say if Brett's been 'unwell' as he never feels peachy on chemo, he always feels downright ill its the nature of the beast.
If your not in the hospital when the temperature spikes, you rush to one.
The general procedure the hospital follows is to take bloods for testing and to start broad spectrum antibiotics.
Brett's had that many infections, so when his temperature spiked last Sunday my husband and I didn't flinch.
It was my husbands turn to stay with our son and I was at home with our daughter.
We had our usually chat on the phone and then I went to bed.
15 minutes later I received a call I will never forget....it was my husband telling me to get into hospital immediately as our son was going to intensive care.
I was very calm and collected........oh was I hell, ha ha
I started shaking from head to foot thinking 'what the hell is happening? he was fine when I left'
I knew I couldn't drive the 40 minute drive to the hospital, so I quickly called my brother.
He arrived within 10 minutes.
He sat in my house with my daughter who was upstairs fast asleep and oblivious to the unfolding drama.
My lovely sister in law drove me at top speed to the hospital.
I was a wreak, I was crying and shaking, I phoned my husband on the way and could hear the doctor in the background saying "wake up, stay with me Brett"
I arrived to a calm pandemonium.
Nurses and doctors were working hard on him and he was taken swiftly to intensive care where we were warned he may need to be put on a life support machine, and we were given the news that he was critically ill.
Luckily he didn't need the life support and 18 hours later he sat up in bed and asked for chips!! much to the delight of everyone in the room.
The doctors believe the sepsis was caused by his gut lining shredding away due to the intensive chemo and this had allowed his own bacteria to escape into his blood stream.
Very deadly.
Very scary.
Very glad its over.
The first week of Brett's intensive chemo went well, albeit, a little too well.
Brett ended up in intensive care, he had Neutropenic Sepsis.
His chemo had made him neutropenic, which it is designed to do.
Lets face it if the chemo doesn't wipe out your blood count it probably isn't going to be getting those bastard cancer cells either.
The major problem with wiping out your blood count is that you have no immunity to anything.
The majority of infections that are picked up wouldn't touch a normal healthy person, so the mass majority of infections that Brett has had aren't even identified.
Usually the only sign of infection tends to be the temperature 'spikes' which means its gone to 38.0 or higher. You can never say if Brett's been 'unwell' as he never feels peachy on chemo, he always feels downright ill its the nature of the beast.
If your not in the hospital when the temperature spikes, you rush to one.
The general procedure the hospital follows is to take bloods for testing and to start broad spectrum antibiotics.
Brett's had that many infections, so when his temperature spiked last Sunday my husband and I didn't flinch.
It was my husbands turn to stay with our son and I was at home with our daughter.
We had our usually chat on the phone and then I went to bed.
15 minutes later I received a call I will never forget....it was my husband telling me to get into hospital immediately as our son was going to intensive care.
I was very calm and collected........oh was I hell, ha ha
I started shaking from head to foot thinking 'what the hell is happening? he was fine when I left'
I knew I couldn't drive the 40 minute drive to the hospital, so I quickly called my brother.
He arrived within 10 minutes.
He sat in my house with my daughter who was upstairs fast asleep and oblivious to the unfolding drama.
My lovely sister in law drove me at top speed to the hospital.
I was a wreak, I was crying and shaking, I phoned my husband on the way and could hear the doctor in the background saying "wake up, stay with me Brett"
I arrived to a calm pandemonium.
Nurses and doctors were working hard on him and he was taken swiftly to intensive care where we were warned he may need to be put on a life support machine, and we were given the news that he was critically ill.
Luckily he didn't need the life support and 18 hours later he sat up in bed and asked for chips!! much to the delight of everyone in the room.
The doctors believe the sepsis was caused by his gut lining shredding away due to the intensive chemo and this had allowed his own bacteria to escape into his blood stream.
Very deadly.
Very scary.
Very glad its over.
Sunday, 15 July 2012
Lets get you up to speed
Brett relapsed on the 26th June 2012.Whilst he was busy making plans to start work and go to college, the evil bastard cancer cells were quietly regrouping and regrowing all ready for their next attack.
He was just due to take his car test (10th July) and we were in the midst of the great debate that alot of parents endure, its the "the car we want you to have" verses the "the car you want you to have".
(unless your rich and then I guess your not bothered by the cost of car insurance and spare car parts,servicing etc.)..mmm...must be nice....
Brett was going out and about and to dinner alot and he and Poppy had started rowing about it because she was jealous. I was constantly reassuring her that it would be her turn soon enough.
You know, the normal household stuff.
Brett prefers going out to dinner than partying.
He doesn't drink - its his choice - his liver was effected by the previous cancer but even when it was better he decided not to bother with alcohol. (We'll see what happens when he's 18).
It must sound strange talking about an underage drinker making a choice not to drink, I bet your thinking "well he cant drink anyway?"
I know our area and unfortunately to get to 17 and not have had a drink is pretty unusual.
Of course the majority of local parents are responsible and punish their children who drink but sadly drinking is rife.
The local doctors were going to treat Brett in the adult oncology department but this did make me very unhappy.
He is only 17 and has been fighting Cancer since he was 13.
My husband and I have made sure that throughout that time Brett has never been alone.
Child wards prefer a parent to stay. We take to pee, poo and vomit bowls to the sloose room.
We are the ones watching every night.
The thought of Brett going to adult services disgusted me on so many levels.
What a way to gain your Independence away from your loved ones that have supported you from day one.
Also the adult service only give local anisetic for the lumber punctures and bone marrow procedures - ouch !!!
Luckily our old consultant had a rethink and allowed back to the best hospital in the world BCH.
I have great faith in our consultant and in the hospital, which helps beyond measure.
So Brett is on course for very intensive chemotherapy, radiotherapy and a bone marrow transplant.... scary.
Also, I can't help but keep feeling very sad that all his suffering and struggle for the last 3 1/2 years have been for nothing.
Hey ho.
He was just due to take his car test (10th July) and we were in the midst of the great debate that alot of parents endure, its the "the car we want you to have" verses the "the car you want you to have".
(unless your rich and then I guess your not bothered by the cost of car insurance and spare car parts,servicing etc.)..mmm...must be nice....
Brett was going out and about and to dinner alot and he and Poppy had started rowing about it because she was jealous. I was constantly reassuring her that it would be her turn soon enough.
You know, the normal household stuff.
Brett prefers going out to dinner than partying.
He doesn't drink - its his choice - his liver was effected by the previous cancer but even when it was better he decided not to bother with alcohol. (We'll see what happens when he's 18).
It must sound strange talking about an underage drinker making a choice not to drink, I bet your thinking "well he cant drink anyway?"
I know our area and unfortunately to get to 17 and not have had a drink is pretty unusual.
Of course the majority of local parents are responsible and punish their children who drink but sadly drinking is rife.
The local doctors were going to treat Brett in the adult oncology department but this did make me very unhappy.
He is only 17 and has been fighting Cancer since he was 13.
My husband and I have made sure that throughout that time Brett has never been alone.
Child wards prefer a parent to stay. We take to pee, poo and vomit bowls to the sloose room.
We are the ones watching every night.
The thought of Brett going to adult services disgusted me on so many levels.
What a way to gain your Independence away from your loved ones that have supported you from day one.
Also the adult service only give local anisetic for the lumber punctures and bone marrow procedures - ouch !!!
Luckily our old consultant had a rethink and allowed back to the best hospital in the world BCH.
I have great faith in our consultant and in the hospital, which helps beyond measure.
So Brett is on course for very intensive chemotherapy, radiotherapy and a bone marrow transplant.... scary.
Also, I can't help but keep feeling very sad that all his suffering and struggle for the last 3 1/2 years have been for nothing.
Hey ho.
Saturday, 7 July 2012
Welcome to real housewife of teenage cancer
I really enjoy 'the real housewifes' series. It doesn't matter whether it's Orange County or NYC, I'm there.
This blog may be a similar name but you won't find Botox, huge boobs and BMW convertibles here.
No, instead I will give the very glamourous world of chemotherapy's, radiotherapy, steroids, Protocols, collecting urine and chemotoxic sick!
Plus much much more.
If you think this blog is going to be depressing, think again.
There are tears in the world of cancer , of course, but a lot of laughter too.
People, welcome to my world. It has been my world since August 2008.
The housewives are always pictured holding apples or oranges, my picture would have .... mmm let's see......a handful of my son's hair which is about to fall out for the 5th time.
This blog may be a similar name but you won't find Botox, huge boobs and BMW convertibles here.
No, instead I will give the very glamourous world of chemotherapy's, radiotherapy, steroids, Protocols, collecting urine and chemotoxic sick!
Plus much much more.
If you think this blog is going to be depressing, think again.
There are tears in the world of cancer , of course, but a lot of laughter too.
People, welcome to my world. It has been my world since August 2008.
The housewives are always pictured holding apples or oranges, my picture would have .... mmm let's see......a handful of my son's hair which is about to fall out for the 5th time.
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