This week has been much more positive and we have had lots of fun with the boys and even been to the beach! Charlies counts were too low to go ahead with treament last week and therefore I chose to keep him away from his playgroup on Friday as exposing him to anything, especially when his neutrophils are so low can cause him to be admitted into hospital which we really dont want.
As things looked to be picking up for Charlie, we decided to have a short drive to the nearest beach,armed with a picnic and buckets and spades. Thomas and Charlie had the best time digging in the sand and looking for shells. Thomas was even mad enough to "swim" in the sea. It was so relaxing watching the boys playing happily and the sun shining,just what we needed. There was a local play area but as Charlies counts were still low, we were unable to go in there in fear of him catching anything so instead we bought the boys an ice cream and had a lovely walk along th sea front.
By Sunday Charlie seemed to be gaining more energy and played with his water table in the garden and him and Tom played endlessly together with various toys. Luckily for us,the two of them get on extremely well-most of the time!! Paul bought Thomas a new bike as an early birthday present and he has been cycling to and from school on it ever since,which he loves doing.
Thomas had an absolute ball at the after school party last Thursday and by all accounts was showing everyone how to breakdance! I had the headmaster stop and ask me where he got his moves from as he was even trying to get him to copy him! On the way home from the party,Thomas informed me that it was the best school ever and even better than Littlemoor and Greenacre-his previous schools (result)!
Since Charlie has gained more energy,I have been able to walk to school (him in pushchair and Tom on bike) which has been wonderful. Fresh air and exercise are so under-rated! We have also met up with a friend and her little girl and spent a lovely time at the Botanical gardens although Charlie was shattered and asked to go home after less than an hour but at least hes getting out and having some normal time.
After having his bloods taken early Wednesday, I called the hospital to find out if his counts has picked up enough for Thursdays treatment. To my delight they had, and we were good to go for the next stage of treatment. This was a double edged sword as the treatment was intense to say the least.
We arrived at the Royal Children's hospital early on Thursday morning and Charlie had his usual obs done-weight,blood pressure etc then he was"hooked" up to a machine (or robot as I tell Charlie when he asks what it it) for hours of fluid which was to protect his bladder. I was told by our Consultant that one of the Chemotherapy treatments he was having severly damages the bladder, so this lessens the likelihood of it happening. Charlie was then called into Theatre where he was to have a Lumbar Puncture (Spinal Tap) and also another dose of (another type) of chemo in his spine along with a device fitted to his leg whereby chemo is administered by us if we choose to take up the challenge! The chemo in his leg will need to be injected into the device once a day for 4 days this week and the same for next week.
When he woke from theatre,Charlie wanted to sit with me for a cuddle eat some food (as he'd been fasting since the previous night) and then proceeded to screamed in pain saying his leg hurt. "Mummy make me better" were his exact words which is hard to take when you're trying to be tough for him. The nurses gave him some painkillers and considered repositioning his "device" in his leg but this time he would be awake if they did it. Luckily he soon calmed down and the pain subsided so it wasnt necessary to do this.
Charlie was then given the chemo shot in his leg "device" and after the nurse struggled to do it on numerous attempts,I made the decision that we would bring him in each day for them to do it as it was too traumatic to even attempt to do it at home ourselves. Him fearing me or Paul is not something we want-he still hasnt got ovet the fact we trimmed his hair so god knows how giving him a chemo shot would go down!!
We still had a few hours of fluid to run through his body so we sat talking,reading books and watching DVD's.Another type of chemo was then hooked up to his "robot" and administered through his port. Not long after, Charlie started to be sick-everywhere! Luckily we had a change of clothes and all was sorted.
It was 6pm by the time we left the hospital and I had a migraine and felt sick so as soon as we got home,I went straight to bed and only got up to administer Charlie yet another dose of Chemo, this time a tablet diluted in a syringe.
Waking this morning I felt just as sick and ill so Paul has needed to take the day off work to take Tom to school and Charlie to the hospital for his leg injection.
Things will pick up and we have some nice things planned for over the weekend. Mum and dad arrive next Thursday evening so things WILL be better!! I havent seen my dad since January and am a little worried how he'll take seeing Charlie as he dotes on him. That aside, we will have a great time and do loads of fun things-we'll make sure of that!
Thursday 28 July 2011
Wednesday 20 July 2011
Blog 3 21.7.11
So today is Thursday and you may have seen the pictures of Charlie up and playing with his water table in the garden. It may have only been for a short period as he was so lethargic, but it was worth getting the camera out for!
Thomas has gone off to school today all excited about his school party this afternoon and I plan to walk down to collect him which is the first time in about a month now so that will be special (may sound crazy, but even the small things are huge when you're going through this crap)!
Charlie was stocked up with books and DVD's this morning ready for our stint in the hosptial. He had been fasting since 5pm yesterday-I was meant to wake to feed him before 4am (this was his cut off for food/drink) but I slept til 5.30am, oops and poor Charlie. So off we went, and all the way to the hospital he asked to go home. The nurses did the usual Observations; weight,temperature, blood pressure, tagged him, etc then he got needled up in his port, ready for the "unicorn milk" they give him in theatre to get him to sleep. Charlie was desperate for a drink/food and how guilty I felt for not waking to top him up in the night (I'll set my alarm next time)!!
Anyway, after a few hours of entertaining him with books, DVD's (and luckily there was a big digger outside on the building site which occupied him for ages), we went in to see the Consultant (our lovely Scottish Dr) and she informed me that we should have been contacted last night to be told his neutrophils are still low so he cant go ahead with treatment. It was to be expected to be honest but he didnt therefore need fasting or needling up.Aghhh!! She apologised for no one contacing us and a new appointment was set for next week,same time same place.We hope that giving his little body a rest from treatment for a week will allow it to recover in time for theatre and chemotherapy next week.
After leaving the Oncology Out patients, I took Charlie to the hospital cafe (we know how to live it up) and he asked for Peanut butter on toast but a plate of chips had to do! Once out of the building and fed and watered he was much perkier and happier but who can blame him?!
I want to highlight what a big part Paul has also played in getting us through all this. Paul has been so strong when its been needed and is the best dad I know (sorry to all the dads out there but it is only my opinion)! It isnt easy for either of us and we dont get much "alone time" but (cliche alert) working as a team is getting us through this tough time. It is only 2 weeks til my folks arrive and we will hopefully be able to get some time together and we have booked a night away which will be heaven (sleep is definitely on the cards)!
Thank you for reading the update and I will be around soon with another blog!
Thomas has gone off to school today all excited about his school party this afternoon and I plan to walk down to collect him which is the first time in about a month now so that will be special (may sound crazy, but even the small things are huge when you're going through this crap)!
Charlie was stocked up with books and DVD's this morning ready for our stint in the hosptial. He had been fasting since 5pm yesterday-I was meant to wake to feed him before 4am (this was his cut off for food/drink) but I slept til 5.30am, oops and poor Charlie. So off we went, and all the way to the hospital he asked to go home. The nurses did the usual Observations; weight,temperature, blood pressure, tagged him, etc then he got needled up in his port, ready for the "unicorn milk" they give him in theatre to get him to sleep. Charlie was desperate for a drink/food and how guilty I felt for not waking to top him up in the night (I'll set my alarm next time)!!
Anyway, after a few hours of entertaining him with books, DVD's (and luckily there was a big digger outside on the building site which occupied him for ages), we went in to see the Consultant (our lovely Scottish Dr) and she informed me that we should have been contacted last night to be told his neutrophils are still low so he cant go ahead with treatment. It was to be expected to be honest but he didnt therefore need fasting or needling up.Aghhh!! She apologised for no one contacing us and a new appointment was set for next week,same time same place.We hope that giving his little body a rest from treatment for a week will allow it to recover in time for theatre and chemotherapy next week.
After leaving the Oncology Out patients, I took Charlie to the hospital cafe (we know how to live it up) and he asked for Peanut butter on toast but a plate of chips had to do! Once out of the building and fed and watered he was much perkier and happier but who can blame him?!
I want to highlight what a big part Paul has also played in getting us through all this. Paul has been so strong when its been needed and is the best dad I know (sorry to all the dads out there but it is only my opinion)! It isnt easy for either of us and we dont get much "alone time" but (cliche alert) working as a team is getting us through this tough time. It is only 2 weeks til my folks arrive and we will hopefully be able to get some time together and we have booked a night away which will be heaven (sleep is definitely on the cards)!
Thank you for reading the update and I will be around soon with another blog!
Monday 18 July 2011
Blog 2-18.7.11
Welcome back and thank you for reading the last blog. Sorry it made so many of you cry but it wasnt my intention,just a snippit of the reality we're living in at the moment.(I also believe some of you wanted to leave comments but it wouldnt allow it.I think you may need to be a "follower" to leave comments)?
After a very tough weekend of even lower blood counts and virtually no sleep, things are looking like they are starting to improve for Charlie this week. He had more than 2 hours sleep last night which was a god send, and is now up and playing with his toys-hooray!
As of yesterday, Thomas is now a fully fledged cyclist after learning to ride his bike properly with his dad's expert tuition (with a little help from Uncle Rob when he was over here). Tom reminded us that we should be proud of him because he is proud of himself!Good old Tom.
He has a new teacher at school this term and he seems to have settled well with this change. He told Paul that he is enjoying being at school more than home at the moment as "I dont like seeing Charlie poorly" and who can blame him?(sometimes I wish I could escape too)! The school community have arranged for Thomas to be picked up and dropped off at home until Charlie's counts improve and this is a huge weight lifted off our shoulders as it means Charlie doesnt have as much opportunity to be exposed to any bugs which maybe flying around. The parents are so supportive which makes life that bit easier.
People have been very generous in continuing to make us home-made meals which has eased the pressure of trying to get a decent meal on the table whilst at the same time, trying to tend to Charlie's demands-oh and does he have some!! Thanks to Sharon and Matt we had a great meal last night with buns to finish off-I am in no danger of wasting away,believe me!
Unfortunately we had to invest in a set of hair clippers on Saturday and shaved the remainder of Charlie's hair off as it was falling out in clumps and causing him distress with the itching. It wasnt the easiest thing to do as Charlie was renowned for his full head of hair but it will grow back and he's still a very beautiful little boy even without the hair.
After a paltry 2 hours sleep I was determined to still go to the early morning farmers market on Sunday which a couple of friends had arranged with me earlier in the week. It wasnt the best idea I'd had but I was so desperate to get out of the house,anything would do! It was the respite I needed and the bananas were a bargain at the equivalent of £6 for 8-for those of you in England,you read right and I'm sure you'll be gloating next time you get your nice bunch of bananas from Morrisons at 70p a bunch! (the cyclone wiped a lot of the crops out here,hence the price).
Fingers crossed Charlie will continue to improve this week and his counts are good enough by Thursday to have his next stage of treatment. This will involve a 6 hour flush to ensure the Chemo isnt sitting in his blood stream, a lumbar puncture and chemo.
Just seeing him smiling,talking and interacting again has perked us all up and I'm sure it will continue as the week goes on as he is a little fighter with a lot of spirit in him. Charlie by name and Cheeky by nature!!
ps Happy Birthday to my little brother who is 28 today!!!
After a very tough weekend of even lower blood counts and virtually no sleep, things are looking like they are starting to improve for Charlie this week. He had more than 2 hours sleep last night which was a god send, and is now up and playing with his toys-hooray!
As of yesterday, Thomas is now a fully fledged cyclist after learning to ride his bike properly with his dad's expert tuition (with a little help from Uncle Rob when he was over here). Tom reminded us that we should be proud of him because he is proud of himself!Good old Tom.
He has a new teacher at school this term and he seems to have settled well with this change. He told Paul that he is enjoying being at school more than home at the moment as "I dont like seeing Charlie poorly" and who can blame him?(sometimes I wish I could escape too)! The school community have arranged for Thomas to be picked up and dropped off at home until Charlie's counts improve and this is a huge weight lifted off our shoulders as it means Charlie doesnt have as much opportunity to be exposed to any bugs which maybe flying around. The parents are so supportive which makes life that bit easier.
People have been very generous in continuing to make us home-made meals which has eased the pressure of trying to get a decent meal on the table whilst at the same time, trying to tend to Charlie's demands-oh and does he have some!! Thanks to Sharon and Matt we had a great meal last night with buns to finish off-I am in no danger of wasting away,believe me!
Unfortunately we had to invest in a set of hair clippers on Saturday and shaved the remainder of Charlie's hair off as it was falling out in clumps and causing him distress with the itching. It wasnt the easiest thing to do as Charlie was renowned for his full head of hair but it will grow back and he's still a very beautiful little boy even without the hair.
After a paltry 2 hours sleep I was determined to still go to the early morning farmers market on Sunday which a couple of friends had arranged with me earlier in the week. It wasnt the best idea I'd had but I was so desperate to get out of the house,anything would do! It was the respite I needed and the bananas were a bargain at the equivalent of £6 for 8-for those of you in England,you read right and I'm sure you'll be gloating next time you get your nice bunch of bananas from Morrisons at 70p a bunch! (the cyclone wiped a lot of the crops out here,hence the price).
Fingers crossed Charlie will continue to improve this week and his counts are good enough by Thursday to have his next stage of treatment. This will involve a 6 hour flush to ensure the Chemo isnt sitting in his blood stream, a lumbar puncture and chemo.
Just seeing him smiling,talking and interacting again has perked us all up and I'm sure it will continue as the week goes on as he is a little fighter with a lot of spirit in him. Charlie by name and Cheeky by nature!!
ps Happy Birthday to my little brother who is 28 today!!!
Thursday 14 July 2011
Blog 1-An overview 15.7.11
Hi and thank you for taking the time to read the "Barratts Adventures in Oz!"blog. I hope that this blog will keep you updated on what we're up to in Oz and the development of Charlie and his Cancer treatment. As you may know, we set out on this adventure back in January 2011 feeling a mixture of apprehension, worry, guilt (for leaving family and friends "behind") but most of all excitment at the thought of trying something new, in a country renowned for being family orientated with the lifestyle to go with it-just up mine and Pauls street.
So after weeks of agonising as to whether it was the right thing to do, and to most peoples shock (mainly about me deciding to go as I'm known for being a homebird), we decided to give this "adventure" a go-afterall, what did we have to lose?!
So we said our farewells and off we went on out first major flight with the 2 boys. The first 3 weeks were very exciting and we jumped at any opportunity given to socialise. That week, Charlie began to show signs of what we thought was teething. On a day out at the beach a few days later, he continued to show signs of a high temperature and we decided to take him to see the GP as his temperature just wouldnt go down. The GP checked him out and sent us to the local hospital just to get him looked at "though its probably a virus",just as we'd expected. A 6 hour wait and a blood test later and we were called into the staff room. Thomas was entertained by 2 of the nurses and was totally oblivious to what was going on and I still didnt think anything was the matter (maybe in hindsight I should've realised that being taken to the staff quarters wasnt the norm)!
This was the moment our life was to be put on hold and we were told that Charlies blood counts were so low that it was highly likely that he had Leukemia. Paul and me were in shock and began to cry.The poor nurse who was looking after us also cried! The worst,unimaginable thoughts ran through my head and the same for Paul,Thomas all the while still oblivious!I called my mum straight away as I needed some comfort.It just didnt feel real,this kind of thing never happens to you its always someone else.God knows what she went through being told your grandson has leukemia, feeling helpless,12,000 miles away. Anyway, Charlie and me were transferred to the Royal Childrens Hosptial in Brisbane where we were told we would meet our consultant Dr Morag. I had visions of a butch Australian woman (just like the Morag I knew from Home and Away)! She was, in contrast, a lovely Scottish lady who was very compassionate and understanding towards what we were experiencing. Paul and Tom arrived an hour later and we were then told Charlie definitely had cancer and he needed to start Chemo the following day and have (one of many) lumbar punctures/spinal taps. She told us it would be 3 years of chemotherapy treatment. I was shocked-he would be Thomas's age by the time it was over!
After the drugs kicked in we had a very different child to the Charlie we knew. He was withdrawn, grumpy,didnt talk, lost interest in toys,couldn't walk,ate constantly,was awake most of the night (and day),and had the worst tantrums imaginable. This in turn had an effect on Tom and his behaviour. He became very agressive one minute hitting me, then tearful the next,telling me how much he loved me. It was apparant that he needed stability so our main issue was finding a school and a house to settle him in where we could get to the hospital easily too as this was now to be our second home.
Tom settled well and has made lovely friends in a lovely neighbourhood. Charlies results came back as promising and things began to improve and we started doing normal family things again with trips to the beach,parks,zoo, circus etc. We had a lovely 2 week visit from my brother and his girlfriend last month and the boys absolutely loved spending time with them. Charlies next treatment stage started 3 weeks ago and it has really effected him again. His white blood (infection fighting ones) counts are really low and hes been on steroids again. He has been in bed/sofa for the past week (though he got up briefly to make my friend Sharron a burger on his toy bbq today then slumped again). Hes had a few screaming tantrums and said hes in pain quite a few times so the morphine has been administered (reluctantly). His hair is now starting to come out in clumps and is itching so I will need to take him to get it cut next week. Hopefully once the steroids wear off, Charlie will be up on his feet again, causing havoc with his brother once more-just the way we want it!
So after weeks of agonising as to whether it was the right thing to do, and to most peoples shock (mainly about me deciding to go as I'm known for being a homebird), we decided to give this "adventure" a go-afterall, what did we have to lose?!
So we said our farewells and off we went on out first major flight with the 2 boys. The first 3 weeks were very exciting and we jumped at any opportunity given to socialise. That week, Charlie began to show signs of what we thought was teething. On a day out at the beach a few days later, he continued to show signs of a high temperature and we decided to take him to see the GP as his temperature just wouldnt go down. The GP checked him out and sent us to the local hospital just to get him looked at "though its probably a virus",just as we'd expected. A 6 hour wait and a blood test later and we were called into the staff room. Thomas was entertained by 2 of the nurses and was totally oblivious to what was going on and I still didnt think anything was the matter (maybe in hindsight I should've realised that being taken to the staff quarters wasnt the norm)!
This was the moment our life was to be put on hold and we were told that Charlies blood counts were so low that it was highly likely that he had Leukemia. Paul and me were in shock and began to cry.The poor nurse who was looking after us also cried! The worst,unimaginable thoughts ran through my head and the same for Paul,Thomas all the while still oblivious!I called my mum straight away as I needed some comfort.It just didnt feel real,this kind of thing never happens to you its always someone else.God knows what she went through being told your grandson has leukemia, feeling helpless,12,000 miles away. Anyway, Charlie and me were transferred to the Royal Childrens Hosptial in Brisbane where we were told we would meet our consultant Dr Morag. I had visions of a butch Australian woman (just like the Morag I knew from Home and Away)! She was, in contrast, a lovely Scottish lady who was very compassionate and understanding towards what we were experiencing. Paul and Tom arrived an hour later and we were then told Charlie definitely had cancer and he needed to start Chemo the following day and have (one of many) lumbar punctures/spinal taps. She told us it would be 3 years of chemotherapy treatment. I was shocked-he would be Thomas's age by the time it was over!
After the drugs kicked in we had a very different child to the Charlie we knew. He was withdrawn, grumpy,didnt talk, lost interest in toys,couldn't walk,ate constantly,was awake most of the night (and day),and had the worst tantrums imaginable. This in turn had an effect on Tom and his behaviour. He became very agressive one minute hitting me, then tearful the next,telling me how much he loved me. It was apparant that he needed stability so our main issue was finding a school and a house to settle him in where we could get to the hospital easily too as this was now to be our second home.
Tom settled well and has made lovely friends in a lovely neighbourhood. Charlies results came back as promising and things began to improve and we started doing normal family things again with trips to the beach,parks,zoo, circus etc. We had a lovely 2 week visit from my brother and his girlfriend last month and the boys absolutely loved spending time with them. Charlies next treatment stage started 3 weeks ago and it has really effected him again. His white blood (infection fighting ones) counts are really low and hes been on steroids again. He has been in bed/sofa for the past week (though he got up briefly to make my friend Sharron a burger on his toy bbq today then slumped again). Hes had a few screaming tantrums and said hes in pain quite a few times so the morphine has been administered (reluctantly). His hair is now starting to come out in clumps and is itching so I will need to take him to get it cut next week. Hopefully once the steroids wear off, Charlie will be up on his feet again, causing havoc with his brother once more-just the way we want it!
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