We're fast approaching my parents going back home and after the first week being extremely stressful with Charlie being in hospital, we have since managed to fit it lots of fun and even more latte breaks!
After our lovely trip to Palmswood, we were pleased to find out that Charlies white blood counts had recovered meaning that he didnt need to go back in for more blood tests until today so we had a small break from the doom and gloom of the hospital. He wasnt very happy when we turned up at the hospital for his blood taking this morning and screamed that he didnt want to go. However, he was very brave and sat patiently whilst they took his blood as he knew it had to be done. Whilst writing this blog, I have just received a call from the Oncolgy dept to say that his counts are too low to go ahead with the planned Lumbar Puncture and chemo tomorrow so yet another delay in his treatment.
Anyway,back to the positive times we've recently had between Charlie's stages of treatment.
Thomas came home from school last Monday beaming. He had been awarded the class merit for being caring and thoughtful towards others and for trying hard. We were so proud of him and having this acknowledgement from his teacher was very touching.
Last Friday we spent a lovely day at the beach whilst Thomas was at school and Paul at work and mum and me have been busy shopping for birthday gifts for the boys-I cant believe Thomas is going to be 6 and Charlie 3!Where does the time go? More importantly its my birthday first though!
Last weekend we took mum and dad into Brisbane centre where they were surprised to see a man-made beach by the river banks. Thomas soon got his swim shorts on and was in the "sea" whilst Charlie sat and had a dig in the sand. We then had a trip on the City Cat which took us on a trip from one side of the river to the other and we had a bite to eat and a stroll round the city before going home as Charlie was now fast asleep from all the excitment.
Paul and myself snook away for a couple of hours and went for a walk up Mount Cootha on Saturday which was very relaxing considering the last time we tried it, we had 2 moaning boys in tow and didnt get very far! This time we made it to the top in half an hour and felt great for doing so. Having my folks around really has been great as its given us the odd hour here or there to do something-even if its just the shopping which I cant normally do as Charlies counts are usually too low to take him with me.
Unfortunatley the weather has been a little wet this past week (we really needed it but not whilst mum and dad were out here). Its limited what we can do,which I'm sure you can all appreciate living in those kinds of conditions most of the time, but we hope it picks up in time for Saturday as we had planned an early birthday celebration for Thomas whilst his grandma and grandad are here.We didn't wanted Charlie's health to impact on Thomas's birthday but after the recent hospital admission, we know only too well how unpredictable it can be. I put it to Thomas that he could have a party with friends or have it with his grandparents on the beach and I'd get him an extra gift.He chose the latter of course!!
I overheard Thomas and Charlie talking yesterday and Thomas asked Charlie what his port in his chest was for. Charlie replied "to put needles in at the hospital". Thomas then showed him his ankle bone and said "I've got a port here Charlie!" knowing only too well that it isnt but trying to make his little brother feel better about having one. (My mum reckons Charlie will be a medical genius when he starts school if he can answer questions like that at 2)!
So it's only 4 days until my parents leave and I'm feeling a little apprehensive about it. Not knowing when I'll see them next and the enjoyment both they and the boys have had spending quality time together makes me feel the same guilt I had when we first left for Oz. The invaluable help we have had from them during Charlie's time in hosptial has made me question what we'll do when he gets admitted again. I will now have to get my butt back into gear and do the school run as dad has been taking on that roll for the past 3 weeks! You forget all the simple things that make a big difference to your life (especially when you have kids) when its there everyday but appreciate them so much more when they're gone.
Hopefully it wont be too long til they visit again and at least we'll all have great memories of the time they spent here these past few weeks.
Tuesday 23 August 2011
Sunday 14 August 2011
Blog 6-14.8.10
So here we are already at blog 6 and so much has happened. We had hoped to have Charlie home on Tuesday of this week but he needed more anti-biotics due to his immune system being so weak. He had about enough energy for 15 minutes in the playroom each day,the rest of the day was spent cooped up in his shared room watching tv,reading books,blowing bubbles and asking so many questions about what was going on around him!
The consultant did her daily rounds and told us he would need another blood transfusion so this went ahead on Wednesday afternoon/evening (thank goodness for those generous people who give blood as he must've had 5 transfusions since January now).
Charlie was so funny with the nurses and soon became a favourite with them. He often asked "whats that does mummy" pointing to the long tubes which had blood or drugs running from his robot, into his port and "can I help you" to the nurses whilst they were administering him his anti-biotics. If they said no then he'd question why not! We were informed by the consultant that it was highly likely that Charlie would get another fever as this stage of treatment as its so intense and his white counts (which fight infection) are extremely low. This made us question our much longed for night away. I ran it past the Social Worker and she advised that we went as she felt it would be benificial for me and Paul to have some alone time and the property wasnt too far away if we needed to rush back.We still thought we'd leave it until Friday to decide.
After Charlie's blood transfusion on Wednesday, mum and me took him home to a very excited older brother and a shattered daddy. Thomas was waiting in the driveway and couldnt stop cuddling him and they soon went off to explore all their toys together. Paul came in from work pleased that he finally had a night in his own bed after doing most of the night shifts at the hospital then going to work the following day whilst I did the day shifts.
I was eventually able to do the school run on Thursday which was lovely as it brought a bit of normality to what was a mad week. I asked Tom's teacher how he'd been this week and she had given him stickers for tidying the whole classroom and a prize for being so good. Maybe I need to get him practising his tidying skills at home!
Charlie had his blood counts done again on Friday and although they were still very low, they hadn't reduced any further so we decided to go on the much needed night away. The property was beautiful and the surroundings even more so. It was set in 10 acres of woodland and was so peaceful so we had a night alone and then my parents and the boys came up on Saturday for the day.
Before they arrived, we got talking to the owner and he mentioned that his son died of cancer at the age of 16. My heart raced at this and as he would be seeing Charlie around, I mentioned that he had (ALL) Leukaemia, which it turns out was the same type as his son had died from. Great, our relaxing weekend was now getting me worried as I'd managed to block these thoughts out for the most part up until now, and stay positive. He was a lovely man with a positive attitude but you could see the heartache in his face when I mentioned Charlie as it obviously brought memories back for him.
Since this conversation, I have shed quite a few tears thinking what could be for us and the effect it would have on us as a family,especially Thomas and the special bond he has with his brother. Paul and me think it strange that of all the places I could've booked, we stumbled upon here,Soul Garden Retreat, named with his son in mind. We had a wonderful time exploring the local village and its quaint shops with breath-taking views. We had the time and space we needed to unwind and reflect on whats actually going on for us right now, and maybe this is why we were brought here,who knows...?
The consultant did her daily rounds and told us he would need another blood transfusion so this went ahead on Wednesday afternoon/evening (thank goodness for those generous people who give blood as he must've had 5 transfusions since January now).
Charlie was so funny with the nurses and soon became a favourite with them. He often asked "whats that does mummy" pointing to the long tubes which had blood or drugs running from his robot, into his port and "can I help you" to the nurses whilst they were administering him his anti-biotics. If they said no then he'd question why not! We were informed by the consultant that it was highly likely that Charlie would get another fever as this stage of treatment as its so intense and his white counts (which fight infection) are extremely low. This made us question our much longed for night away. I ran it past the Social Worker and she advised that we went as she felt it would be benificial for me and Paul to have some alone time and the property wasnt too far away if we needed to rush back.We still thought we'd leave it until Friday to decide.
After Charlie's blood transfusion on Wednesday, mum and me took him home to a very excited older brother and a shattered daddy. Thomas was waiting in the driveway and couldnt stop cuddling him and they soon went off to explore all their toys together. Paul came in from work pleased that he finally had a night in his own bed after doing most of the night shifts at the hospital then going to work the following day whilst I did the day shifts.
I was eventually able to do the school run on Thursday which was lovely as it brought a bit of normality to what was a mad week. I asked Tom's teacher how he'd been this week and she had given him stickers for tidying the whole classroom and a prize for being so good. Maybe I need to get him practising his tidying skills at home!
Charlie had his blood counts done again on Friday and although they were still very low, they hadn't reduced any further so we decided to go on the much needed night away. The property was beautiful and the surroundings even more so. It was set in 10 acres of woodland and was so peaceful so we had a night alone and then my parents and the boys came up on Saturday for the day.
Before they arrived, we got talking to the owner and he mentioned that his son died of cancer at the age of 16. My heart raced at this and as he would be seeing Charlie around, I mentioned that he had (ALL) Leukaemia, which it turns out was the same type as his son had died from. Great, our relaxing weekend was now getting me worried as I'd managed to block these thoughts out for the most part up until now, and stay positive. He was a lovely man with a positive attitude but you could see the heartache in his face when I mentioned Charlie as it obviously brought memories back for him.
Since this conversation, I have shed quite a few tears thinking what could be for us and the effect it would have on us as a family,especially Thomas and the special bond he has with his brother. Paul and me think it strange that of all the places I could've booked, we stumbled upon here,Soul Garden Retreat, named with his son in mind. We had a wonderful time exploring the local village and its quaint shops with breath-taking views. We had the time and space we needed to unwind and reflect on whats actually going on for us right now, and maybe this is why we were brought here,who knows...?
Sunday 7 August 2011
Blog 5- 7.8.11 Hospital admission
Thank you for continuing to read the blog and things have really happened this week! We had the unexpected blood transfusion on Thursday, the arrival of my mum and dad on Thursday evening and then the admission of Charlie into hospital on Friday. We certainly dont lead a boring life (nothing wrong with boring I say)!
Since the last blog we have continued to enjoy the glorious Australian weather and had a few fun trips to the park but have still kept Charlie away from playgroup and places where there are lots of people in the hope of him staying bug free.
The consultant confidently told me last week,after a full on day in the hospital that this weeks treatment would be quick. Oh how wrong was she! We arrived at the hospital (not very well prepared for a full day there to be honest) and expected to be 4 hours max. Unfortunately for us Charlie's red blood counts were low and a blood transfusion was needed so we were there 10 hours and exhausted after it. Charlie had his chemo and blood transfusion and was so excited that he was having chips (yet again) for dinner. Only on the way home, the chemo obviously had other ideas and he was sick all over himself in the car. As the sick is toxic due to chemo being present, the rubber gloves came out even before he could be lifted from his sick filled seat for a cuddle and clean up. He was shattered and as pale as a sheet to say he'd just had a transfusion-normally he is instantly re-energized but not on this occassion. The chip dinner never happened and he was given anti-sickness medicine and put to bed to rest.
Thursday evening Thomas,Paul and myself all jumped in the car and excitedly drove to the airport (Michael kindly babysat). We thought we'd timed it well to park the car and surprise my folks with the fact Thomas was with us but they were already through customs and waiting outside for us. The big reunion was therefore reduced to a "quick,get in the car we're parked on the zebra crossing"! It was great to see them and Thomas was so excited by them eventually being here.
Friday morning and I could hear Thomas and Charlie playing with my parents which brought a tear(ok a flood of tears) to my eyes as I realised how close they were and also how much support we'd missed out on by being so far away. Thomas insisted that his grandma took him to school so off we went and he introduced her to his teacher in a very proud manner.
After the school drop off, one of the mums from school (who is a nurse) came round to administer Charlies leg injection of chemo which he wasnt too happy about but it saved the 2plus hour wait at the hospital Paul had to endure last week for each visit.
Charlie didnt seem his usual energetic self considering he'd just had a transfusion and as the day and evening progressed, his temperature steadily increased. I contacted the Children's cancer ward for advice and they said to take it again in 30 minutes and if it hadnt gone down, to call them back and take him to A&E whereby they would inform them we were on our way. I packed a bag and as his temperature was rising, we informed the ward and headed to the hospital. We arrived at the hospital and Charlie asked "what we doing mummy" then started crying in absolute fear. We were welcomed by the Triage nurse who quickly showed us to a back room where the dr and nurses rushed around getting all the information they needed to treat him as quickly as they could-temperatures can be life threatening to children with cancer if they are not treated fast.Charlie was petrified.He had been plucked,fast asleep from his bed and rushed down to his worst place on earth so who can blame him. His temp was 39.6,he was screaming and the dr's were needling up his port, prodding and poking him and he cried out "I dont like it" over and over then said "mummy it hurts". His blood was taken to be cultured to see if there are any infections (this takes a few days for results) and he was quickly given antibiotics. He soon calmed down and was eventually transferred to a ward at 3am. Apparantly Paul fell asleep and the nurse had to wake him at 2.30 but Charlie was still sat there watching Thomas the Tank!
I drove home and not far from the hospital got stopped by police to have a breath test! Just to top my night off (I hadnt been drinking though I could've done with one)!
Charlie's temperature rose again Saturday morning but has now stabilized and we're hoping he's home on Tuesday-we actually thought it'd be earlier but I suppose they have to take all the precautions they can with him being so frail. Thomas has visited him a few times and really cheered him up. Hes read to him,brought drawings for him,played with him and made him laugh heaps more than me and Paul could. Charlie wanted to got to the hospital play room today but after only a few steps told me he was wobbly. Lifting him up and pulling his robot along we made it to the play room to find Thomas on the computer with his dad-like father like son hey! On Charlies return to his bed he requested bubbles which made him giggle so much. He is such a funny little boy with a great spirit and never moans and his attitude is what keeps us all going.
It hasnt been much of a holiday for mum and dad but they keep telling me that isnt why they came (only I'd hoped after mum experiencing how bad it was last time,we could have some fun).Once Charlie's home,things will pick up and we'll be out at the beach and parks exploring.All in good time though!
Since the last blog we have continued to enjoy the glorious Australian weather and had a few fun trips to the park but have still kept Charlie away from playgroup and places where there are lots of people in the hope of him staying bug free.
The consultant confidently told me last week,after a full on day in the hospital that this weeks treatment would be quick. Oh how wrong was she! We arrived at the hospital (not very well prepared for a full day there to be honest) and expected to be 4 hours max. Unfortunately for us Charlie's red blood counts were low and a blood transfusion was needed so we were there 10 hours and exhausted after it. Charlie had his chemo and blood transfusion and was so excited that he was having chips (yet again) for dinner. Only on the way home, the chemo obviously had other ideas and he was sick all over himself in the car. As the sick is toxic due to chemo being present, the rubber gloves came out even before he could be lifted from his sick filled seat for a cuddle and clean up. He was shattered and as pale as a sheet to say he'd just had a transfusion-normally he is instantly re-energized but not on this occassion. The chip dinner never happened and he was given anti-sickness medicine and put to bed to rest.
Thursday evening Thomas,Paul and myself all jumped in the car and excitedly drove to the airport (Michael kindly babysat). We thought we'd timed it well to park the car and surprise my folks with the fact Thomas was with us but they were already through customs and waiting outside for us. The big reunion was therefore reduced to a "quick,get in the car we're parked on the zebra crossing"! It was great to see them and Thomas was so excited by them eventually being here.
Friday morning and I could hear Thomas and Charlie playing with my parents which brought a tear(ok a flood of tears) to my eyes as I realised how close they were and also how much support we'd missed out on by being so far away. Thomas insisted that his grandma took him to school so off we went and he introduced her to his teacher in a very proud manner.
After the school drop off, one of the mums from school (who is a nurse) came round to administer Charlies leg injection of chemo which he wasnt too happy about but it saved the 2plus hour wait at the hospital Paul had to endure last week for each visit.
Charlie didnt seem his usual energetic self considering he'd just had a transfusion and as the day and evening progressed, his temperature steadily increased. I contacted the Children's cancer ward for advice and they said to take it again in 30 minutes and if it hadnt gone down, to call them back and take him to A&E whereby they would inform them we were on our way. I packed a bag and as his temperature was rising, we informed the ward and headed to the hospital. We arrived at the hospital and Charlie asked "what we doing mummy" then started crying in absolute fear. We were welcomed by the Triage nurse who quickly showed us to a back room where the dr and nurses rushed around getting all the information they needed to treat him as quickly as they could-temperatures can be life threatening to children with cancer if they are not treated fast.Charlie was petrified.He had been plucked,fast asleep from his bed and rushed down to his worst place on earth so who can blame him. His temp was 39.6,he was screaming and the dr's were needling up his port, prodding and poking him and he cried out "I dont like it" over and over then said "mummy it hurts". His blood was taken to be cultured to see if there are any infections (this takes a few days for results) and he was quickly given antibiotics. He soon calmed down and was eventually transferred to a ward at 3am. Apparantly Paul fell asleep and the nurse had to wake him at 2.30 but Charlie was still sat there watching Thomas the Tank!
I drove home and not far from the hospital got stopped by police to have a breath test! Just to top my night off (I hadnt been drinking though I could've done with one)!
Charlie's temperature rose again Saturday morning but has now stabilized and we're hoping he's home on Tuesday-we actually thought it'd be earlier but I suppose they have to take all the precautions they can with him being so frail. Thomas has visited him a few times and really cheered him up. Hes read to him,brought drawings for him,played with him and made him laugh heaps more than me and Paul could. Charlie wanted to got to the hospital play room today but after only a few steps told me he was wobbly. Lifting him up and pulling his robot along we made it to the play room to find Thomas on the computer with his dad-like father like son hey! On Charlies return to his bed he requested bubbles which made him giggle so much. He is such a funny little boy with a great spirit and never moans and his attitude is what keeps us all going.
It hasnt been much of a holiday for mum and dad but they keep telling me that isnt why they came (only I'd hoped after mum experiencing how bad it was last time,we could have some fun).Once Charlie's home,things will pick up and we'll be out at the beach and parks exploring.All in good time though!
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