Again, whenever I open the laptop to write the blog it's usually bad news or to say how exhausted we are. It is bad news, England have just been knocked out of the Euro's. I know, we didn't play well, but deep down you still believe we can do well.
Oh yeah, Caitlin. Caitlin is back in hospital after being discharged for a whole 16 hours before she was back. A night of diarrhoea, and a few more spots is enough to bring her back in for more anti-biotics and anti-viral fluids, observations and hopefully solid poos!
Unfortunately though, Caitlin was also sick tonight and with it came her NG tube. Apparently it took 40 minutes to get a new one inside her, which included Caitlin screaming, sticking her finger up at the nurses (that's a new one), threatening to swear and trying to bite and kick. It's something that needs sorting soon as we can't keep going through it.
That's all we know at the moment really, her chemo has been pushed back at least two weeks to let her counts recover but we don't know when that will be.
When I know, I'll post it up.
xxx
Sunday, 24 June 2012
Wednesday, 20 June 2012
Contagion
This week has probably been one of the roughest we've encountered so far. It started on Monday with Caitlin needing a blood transfusion after a routine sample on Sunday. She played up on the Sunday and we were in Ipswich Hospital all day on the Monday, Caitlin kicked off massively! It was the worst she had been, and something that is being monitored by both hospitals as this aggressiveness can't continue. We're facing the brunt of all of Caitlin's anger and the added stress on us is so intense, its affecting us all.
Alarm bells started ringing for a different problem though on Tuesday. Caitlin had a blistery spot appear on her neck, which soon followed by a few more. Today, she was getting covered in them early on. It looked like our holiday fears had been realised, and Caitlin had chickenpox.
Ordinarily, Caitlin getting chickenpox at this age wouldn't be too much of a problem, because she has Leukaemia, it's dangerous. It can interfere with the chemo and most of all set us back hugely in Caitlin's treatment. We've been with Caitlin in Ipswich Hospital all day, there was talk of her being admitted to Addenbrooke's but they're happy for her to be treated at Ipswich. She's on anti-viral fluids and anti-biotics to combat the chickenpox and all we can do at this stage is wait.
I think this is rock bottom for us currently. As parents we're really strained and its been increasingly tough on all of us. This is to be expected but you're still not prepared for it, there's no manual on how to deal with the emotions you go through, just an expectancy that it will happen at some point. With Alisha and Caitlin at Hospital and Jessica and I at home, it always feels like the family is split and the feeling of isolation and sheer helplessness just overwhelms us. We can't feel sorry for ourselves as we have to be happy for the girls, we have to stay strong and make sure they're ok. As always this setback won't stop us from getting to where we want to be, it just might take us a little longer than we'd hoped.
I'll leave you all with a few pics of Caitlin from Monday, a lady whose daughter had Leukaemia brings the lovely animals in for the kids to stroke and feed:
I'll update when we know more. I'm not sure when that will be.
XxX
Alarm bells started ringing for a different problem though on Tuesday. Caitlin had a blistery spot appear on her neck, which soon followed by a few more. Today, she was getting covered in them early on. It looked like our holiday fears had been realised, and Caitlin had chickenpox.
Ordinarily, Caitlin getting chickenpox at this age wouldn't be too much of a problem, because she has Leukaemia, it's dangerous. It can interfere with the chemo and most of all set us back hugely in Caitlin's treatment. We've been with Caitlin in Ipswich Hospital all day, there was talk of her being admitted to Addenbrooke's but they're happy for her to be treated at Ipswich. She's on anti-viral fluids and anti-biotics to combat the chickenpox and all we can do at this stage is wait.
I think this is rock bottom for us currently. As parents we're really strained and its been increasingly tough on all of us. This is to be expected but you're still not prepared for it, there's no manual on how to deal with the emotions you go through, just an expectancy that it will happen at some point. With Alisha and Caitlin at Hospital and Jessica and I at home, it always feels like the family is split and the feeling of isolation and sheer helplessness just overwhelms us. We can't feel sorry for ourselves as we have to be happy for the girls, we have to stay strong and make sure they're ok. As always this setback won't stop us from getting to where we want to be, it just might take us a little longer than we'd hoped.
I'll leave you all with a few pics of Caitlin from Monday, a lady whose daughter had Leukaemia brings the lovely animals in for the kids to stroke and feed:
XxX
Saturday, 16 June 2012
Old School
Sorry, I've been meaning to update this the last three days but I just haven't had chance. So much has happened, where do I start?
Well, England beat Sweden, Russia just got knocked out, and David Cameron squirmed through his questions in the Leveson Inquiry.
More importantly though, Caitlin went back to school! Wednesday was the first time Caitlin wore a school uniform since breaking up for Christmas in December 2011. Amazing when you think back to it all as it seems like such a long time ago. She wore a blonde and pink wig to school and the kids all wanted to play with her and be near her in class, everyone made her feel welcome, like she had never been away. We didn't know how long Caitlin would last as her energy levels are so up and down, but we rang the school mid-morning and she wanted to stay for lunch! We picked her up again at 1 as she still can't quite manage a full day, but everyone was so happy that she was back.
She had a long sleep that afternoon as she was exhausted! On the Thursday I got a phone call saying that Caitlin was complaining that her Hickman Line was hurting her. A visit to the hospital half an hour later and the doctor was checking her over and concluded that she was fine, she had a routine blood sample taken and we were on our merry way.
We received the phone call for her blood sample results later that afternoon and typically, they were low, Caitlin was Neutropenic and wouldn't be able to go back to school until her counts picked up again. Typical!
It brings us to now really, sitting here writing this with a beer, some heavy metal and the realisation that a blood transfusion is just around the corner.
I'll update when we know more.
xxx
Well, England beat Sweden, Russia just got knocked out, and David Cameron squirmed through his questions in the Leveson Inquiry.
More importantly though, Caitlin went back to school! Wednesday was the first time Caitlin wore a school uniform since breaking up for Christmas in December 2011. Amazing when you think back to it all as it seems like such a long time ago. She wore a blonde and pink wig to school and the kids all wanted to play with her and be near her in class, everyone made her feel welcome, like she had never been away. We didn't know how long Caitlin would last as her energy levels are so up and down, but we rang the school mid-morning and she wanted to stay for lunch! We picked her up again at 1 as she still can't quite manage a full day, but everyone was so happy that she was back.
She had a long sleep that afternoon as she was exhausted! On the Thursday I got a phone call saying that Caitlin was complaining that her Hickman Line was hurting her. A visit to the hospital half an hour later and the doctor was checking her over and concluded that she was fine, she had a routine blood sample taken and we were on our merry way.
We received the phone call for her blood sample results later that afternoon and typically, they were low, Caitlin was Neutropenic and wouldn't be able to go back to school until her counts picked up again. Typical!
It brings us to now really, sitting here writing this with a beer, some heavy metal and the realisation that a blood transfusion is just around the corner.
I'll update when we know more.
xxx
Monday, 11 June 2012
Back to the Future: Part 3
Yesterday Caitlin had a routine blood sample taken to make sure her counts were fine for a trip to Addenbrooke's today.
Everything came back fine and we were good to go. Today was the last of Escalating Capizzi, which consisted of Vincristine and Cytarabines. We had to wait a little while as they have to be made up and being Monday, they have a backlog of two days to catch up on. Everything went absolutely fine and once again, everyone mentioned how well she's coping and doing through this tough block, she's put a bit of weight back on and her counts are good.
Which brings me to the next block, its called Delayed Intensification... I know, it sounds like a method to torture James Bond. However, this 2 month block, in theory, is Caitlin's last before Maintenance. This block features all our old favourite drugs, Dexamethasone, Mercaptopurine, Cytarabines, Vincristine, Cyclophosphamide, and Septrin. We also add in Doxorubicin in this block, which damages DNA and kills cancer cells. It is a type of anthracycline antitumour antibiotic, lovely bit of alliteration! This block is mainly at Addenbrooke's hospital, with Ipswich administering a few of the drugs. We hopefully start on the 25th of June, blood counts permitting. It's going to be fairly intense (d'uh!) but Caitlin has had these drugs before, and we're used to it all by now so we've just got to plough on and see August as the light we've been so desperately aiming towards. I'll add the flowchart on here once I scan it in, it may not make much sense to anyone but at least people can get an idea of what we get and go by.
The charity fundraising is going well with the organisation of the gig fundraiser going full steam ahead with amazing raffle prizes coming in, Cyclemania is coming along nicely, there's an awesome bike rally being planned and the best of all, my Dad and the team did the BT Three Peaks walk in awful conditions in 10 Hours and 45 Minutes. So far he's raised £1030 for Clic Sargent but it looks like a load more is being added to that so it's a brilliant achievement from everyone and a massive thank you to everyone who has donated!
We spoke to a couple today who's little girl was in the early stages of treatment, and it brought back so many memories of how we were at that point, scared, confused, angry but most of all unsure of what the future held. The little girl was so sweet but just so angry at everyone, and it just reminded me of what we went through and how we coped with the help of the charities and the hospitals and the people around us. I'm determined to raise as much money as I can this year.
XXX
Everything came back fine and we were good to go. Today was the last of Escalating Capizzi, which consisted of Vincristine and Cytarabines. We had to wait a little while as they have to be made up and being Monday, they have a backlog of two days to catch up on. Everything went absolutely fine and once again, everyone mentioned how well she's coping and doing through this tough block, she's put a bit of weight back on and her counts are good.
Which brings me to the next block, its called Delayed Intensification... I know, it sounds like a method to torture James Bond. However, this 2 month block, in theory, is Caitlin's last before Maintenance. This block features all our old favourite drugs, Dexamethasone, Mercaptopurine, Cytarabines, Vincristine, Cyclophosphamide, and Septrin. We also add in Doxorubicin in this block, which damages DNA and kills cancer cells. It is a type of anthracycline antitumour antibiotic, lovely bit of alliteration! This block is mainly at Addenbrooke's hospital, with Ipswich administering a few of the drugs. We hopefully start on the 25th of June, blood counts permitting. It's going to be fairly intense (d'uh!) but Caitlin has had these drugs before, and we're used to it all by now so we've just got to plough on and see August as the light we've been so desperately aiming towards. I'll add the flowchart on here once I scan it in, it may not make much sense to anyone but at least people can get an idea of what we get and go by.
The charity fundraising is going well with the organisation of the gig fundraiser going full steam ahead with amazing raffle prizes coming in, Cyclemania is coming along nicely, there's an awesome bike rally being planned and the best of all, my Dad and the team did the BT Three Peaks walk in awful conditions in 10 Hours and 45 Minutes. So far he's raised £1030 for Clic Sargent but it looks like a load more is being added to that so it's a brilliant achievement from everyone and a massive thank you to everyone who has donated!
We spoke to a couple today who's little girl was in the early stages of treatment, and it brought back so many memories of how we were at that point, scared, confused, angry but most of all unsure of what the future held. The little girl was so sweet but just so angry at everyone, and it just reminded me of what we went through and how we coped with the help of the charities and the hospitals and the people around us. I'm determined to raise as much money as I can this year.
XXX
Monday, 4 June 2012
Dumb and Dumber
It's not very often I go off on one, I'm a fairly placid person, but the stupidity of people confounds me.
If your child has chickenpox, then it's probably best you don't put them in close proximity of other children. It's also probably wise not putting them near a child who is obviously going through chemotherapy & whose treatment can be massively affected by chickenpox. Most of all though, it's probably best you don't teach your child to say "I don't have chickenpox" as they will say it out of nowhere, out of context of any conversation, & you will be found out. You will, more than likely, infuriate a mum & a dad who are trying desperately to keep their daughter safe & out of hospital, & on track with her chemo.
I get the feeling I'm going to be updating again soon. :-(
XxX
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