Friday, 2 December 2011
Wednesday, 2 November 2011
Blog 11-3.11.11
The last few weeks have been fantastic. We have had no hospital visits and lots of socialising going on. After the rush of birthdays and wedding celebrations, things calmed down and we have been able to enjoy more quality time together as a family and also with friends.
You may have seen the photos of Charlie and Thomas with their fireman backpacks on, soaking one another, along with the photos of our family bike ride and the numerous pictures taken at various parks.Well this has brought so much enjoyment to me and Paul,seeing our little boy playing and having fun just like any normal 3 year old should. Charlie is still getting tired very quickly but it just means we limit the length of time he does anything and so he still has lots of fun and is learning how to socialise.Though this is debatable at times when he growls at the little girls and makes them cry!
Although more relaxed, we are still very concious about him contracting anything and we have to keep him away from any potential bugs for his own good. A sibling of one of Thomas's school friends had a really contagious virus last week with a rash covering his whole body and times like that bring the reality of Charlie's illness home and the risks posed to him in such situations. Needless to say we stood well back-not good for my social life with potentially offending other mums!
I have been trying to have some "me" time more recently and this has been heaven. I have been walking with a friend once a week along the river,giving us time to unwind and catch up with any vital gossip, and I did a power walk with one of my friends from school on Monday which was tough going with all the hills (mountains in fact) they have here,but was so enjoyable. And next week I hope to start a regular swim day with 2 friends from school. As Charlie isnt safe to go into childcare yet, we will alternate looking after the kids by the side of the pool whilst the others do their laps-genius!
We have been lucky and met some wonderful people out here who invite us along to social gatherings. I even went to my very first Tupperware party this week.Mum would be proud! (she use to drag my sister around on buses when she was about 3 years old, with all her Tupperware gear and hold parties at peoples houses. I'm told that my sister was the selling point which made people part with their cash-child labour at its best in the 70's)! I also attended my very first Melbourne cup party this week. Lots of champers and not much winning! Paul on the other hand had a flutter and his horse came in first.
Thomas started a new outdoor swimming class on Sundays and is loving it. We took Charlie along the first week only to find it was an amazing pool with slides and lots of fun things for children to explore and do in the water. All Charlie could do was splash his hand in the water which was really upsetting. After this experience we have vowed to get a house with a pool next year so he can go in and enjoy himself like he should be able to. Thomas has been having lots of playdates recently which again, gives us a feeling of normality in a very abnormal environment. He has been invited to a fun day tomorrow at the hospital for children of siblings with cancer-not sure how they can put "fun" and "hospital" in the same sentence! He is really looking forward to it though so hopefully it will be good for him.
As some of you may have heard, I made a big boo boo! Paul and myself were invited to an 80's party (so I thought) weeks ago. I was very organised and got Paul an outfit which arrived 2 weeks ago, and ordered myself one too. Only to re-read the invite 3 days before the party and its a 70's do! What a wally I felt and Paul wasnt too impressed after getting hyped up to go as Tom Cruise from Top Gun! To the fancy dress shop we go!
So today was time for another visit to the dreaded H word. Charlie was quite composed until we got to the road he recognised took us to the hospital. Then he started to demand to go back. "Turn round right now mummy,its the other way". He wasnt too bad leading up to his theatre place but on waking up he was so distressed. They needed to put a tube down his throat during the Lumbar Puncture process, to open his airways and he could taste it for ages afterwards. He just kept asking over and over to go home. He then had to have more chemo on top of the chemo they put in his spine when doing the lumbar puncture and they then needed to take more bloods but it wouldnt come out of his port,agghh! The poor love thought he was going home but I firstly had to take him to the blood collectors for a finger prick. Charlie was so relieved to be out of the Oncology ward that he didnt flinch when they took his blood.
Although it was all very distressing, Charlie is doing well and is now on maintenance,as of today-whoo! This means he has oral chemo at home everyday, steroids twice a day (yikes as these didnt agree with him and make you agressive/moody etc), another oral chemo once a week and then hospital visits, fortnightly for bloods taking (to check on his counts) and once a month for more chemo. This will be ongoing until April 2012 so we've still a way to go.
On seeing the consultant today, I asked what the likelihood of flying with Charlie was. If I'm honest, I was hopeful-you need to be when you're going through this. I was upset and disappointed with her response though she was very understanding. She herself is Scottish and explained that she wouldnt want to rule it out as she knows how important it is to go home but Charlie's port is the main concern along with if he got febrile whilst on the journey. She said that we would need to see how he goes in the next 7months or so and maybe his port could be removed (eek) if it wasnt needed for a short period then replaced when he got back. I dont think I want to take any risks and Charlie's health comes first so we will see. So disappointed with this answer as really felt hopeful for making a visit home next year,fingers crossed we still can.
On a lighter note, not only is it my nephews birthday today,happy 5th birthday Oliver but my sis in law and good friend, Michelle is in labour! She is expecting a little girl but who knows as I dreamt it was a boy! Can't wait to see her and wish we could have a cuddle (with the baby too of course)!
Living at the other end of the world can be tough at times like this!
You may have seen the photos of Charlie and Thomas with their fireman backpacks on, soaking one another, along with the photos of our family bike ride and the numerous pictures taken at various parks.Well this has brought so much enjoyment to me and Paul,seeing our little boy playing and having fun just like any normal 3 year old should. Charlie is still getting tired very quickly but it just means we limit the length of time he does anything and so he still has lots of fun and is learning how to socialise.Though this is debatable at times when he growls at the little girls and makes them cry!
Although more relaxed, we are still very concious about him contracting anything and we have to keep him away from any potential bugs for his own good. A sibling of one of Thomas's school friends had a really contagious virus last week with a rash covering his whole body and times like that bring the reality of Charlie's illness home and the risks posed to him in such situations. Needless to say we stood well back-not good for my social life with potentially offending other mums!
I have been trying to have some "me" time more recently and this has been heaven. I have been walking with a friend once a week along the river,giving us time to unwind and catch up with any vital gossip, and I did a power walk with one of my friends from school on Monday which was tough going with all the hills (mountains in fact) they have here,but was so enjoyable. And next week I hope to start a regular swim day with 2 friends from school. As Charlie isnt safe to go into childcare yet, we will alternate looking after the kids by the side of the pool whilst the others do their laps-genius!
We have been lucky and met some wonderful people out here who invite us along to social gatherings. I even went to my very first Tupperware party this week.Mum would be proud! (she use to drag my sister around on buses when she was about 3 years old, with all her Tupperware gear and hold parties at peoples houses. I'm told that my sister was the selling point which made people part with their cash-child labour at its best in the 70's)! I also attended my very first Melbourne cup party this week. Lots of champers and not much winning! Paul on the other hand had a flutter and his horse came in first.
Thomas started a new outdoor swimming class on Sundays and is loving it. We took Charlie along the first week only to find it was an amazing pool with slides and lots of fun things for children to explore and do in the water. All Charlie could do was splash his hand in the water which was really upsetting. After this experience we have vowed to get a house with a pool next year so he can go in and enjoy himself like he should be able to. Thomas has been having lots of playdates recently which again, gives us a feeling of normality in a very abnormal environment. He has been invited to a fun day tomorrow at the hospital for children of siblings with cancer-not sure how they can put "fun" and "hospital" in the same sentence! He is really looking forward to it though so hopefully it will be good for him.
As some of you may have heard, I made a big boo boo! Paul and myself were invited to an 80's party (so I thought) weeks ago. I was very organised and got Paul an outfit which arrived 2 weeks ago, and ordered myself one too. Only to re-read the invite 3 days before the party and its a 70's do! What a wally I felt and Paul wasnt too impressed after getting hyped up to go as Tom Cruise from Top Gun! To the fancy dress shop we go!
So today was time for another visit to the dreaded H word. Charlie was quite composed until we got to the road he recognised took us to the hospital. Then he started to demand to go back. "Turn round right now mummy,its the other way". He wasnt too bad leading up to his theatre place but on waking up he was so distressed. They needed to put a tube down his throat during the Lumbar Puncture process, to open his airways and he could taste it for ages afterwards. He just kept asking over and over to go home. He then had to have more chemo on top of the chemo they put in his spine when doing the lumbar puncture and they then needed to take more bloods but it wouldnt come out of his port,agghh! The poor love thought he was going home but I firstly had to take him to the blood collectors for a finger prick. Charlie was so relieved to be out of the Oncology ward that he didnt flinch when they took his blood.
Although it was all very distressing, Charlie is doing well and is now on maintenance,as of today-whoo! This means he has oral chemo at home everyday, steroids twice a day (yikes as these didnt agree with him and make you agressive/moody etc), another oral chemo once a week and then hospital visits, fortnightly for bloods taking (to check on his counts) and once a month for more chemo. This will be ongoing until April 2012 so we've still a way to go.
On seeing the consultant today, I asked what the likelihood of flying with Charlie was. If I'm honest, I was hopeful-you need to be when you're going through this. I was upset and disappointed with her response though she was very understanding. She herself is Scottish and explained that she wouldnt want to rule it out as she knows how important it is to go home but Charlie's port is the main concern along with if he got febrile whilst on the journey. She said that we would need to see how he goes in the next 7months or so and maybe his port could be removed (eek) if it wasnt needed for a short period then replaced when he got back. I dont think I want to take any risks and Charlie's health comes first so we will see. So disappointed with this answer as really felt hopeful for making a visit home next year,fingers crossed we still can.
On a lighter note, not only is it my nephews birthday today,happy 5th birthday Oliver but my sis in law and good friend, Michelle is in labour! She is expecting a little girl but who knows as I dreamt it was a boy! Can't wait to see her and wish we could have a cuddle (with the baby too of course)!
Living at the other end of the world can be tough at times like this!
Tuesday, 11 October 2011
Blog 10-Decision time, Charlie's 3rd birthday and a much needed weekend break
Thank you for returning to read the latest installment of my blog. Cataloging the ups and downs of relocating to the other side of the world together with discovering our 2 year old son has been diagnosed with Leukaemia 3 weeks after arriving here in January 2011.
Last week was a tough week in many respects. I was fighting with the dreaded feelings of homesickness,experiencing migraines and all brought on by the stress of knowing Paul and myself had to make the huge decison concerning Charlie's future chemotherapy treatment and which path to take next.
Having no family around to support us makes life out here incredibly hard at times. I was use to living 10 minutes away from family and they would be on hand at the drop of a hat if I really needed them to be. Now though,we have to do things differently. Either just soldier on through it or.....Paul takes a day off work! I was insistant that I would be fine coping with the migraine and taking Thomas to school and looking after Charlie,when I knew full well I should rest. Thankfully Paul took the executive decision to not go into work and took over my childcare duties for the day. Life back home in England seemed so simple whenever this kind of scenario arose. Paul would go to work and I would call on family to help me out with the kids. We sometimes take people and life for granted and this experience has reconfirmed to me to appreciate what we have and not to take things and especially people for granted,ever.
So Tuesday arrived and it was D-day in terms of getting the information to decide which path to take with regards to his treatment. If dealing with the illness wasnt hard enough,we now, as his parents had to make what could potentially be the biggest decision ever-no wonder I had a migraine! We gathered the information and stored it away for reading once we got home.
Charlie meanwhile was undergoing a lumbar puncture,chemotherapy in his spine and then 2 more doses of chemo when he came out from theatre. He was really pumped up this week but hopefully its doing its job. I look at him and don't know where he gets his strength from because if that was me, I wouldn't be coping half as well as he is. Kids are so resilient and he just picks himself up and gets on with playing or fighting with his brother!
Things were a little different this week at the hospital. Charlie has become increasingly anxious about attending his appointments of late, which has been upsetting for all of us but terrifying for him. One of my friends in England had a fantastic idea and she had a bag specially made which is specifically for when we attend the hospital. The bag is beautifully personalised and he gets to choose a treat from it if hes a brave boy (every time he goes to the hospital).It worked wonders last week and the anxiety levels were definitely much lower so fingers crossed!
Once home we read the information relating to the clinical trail versus the standard route. After weighing up the pros and cons of each, it was evident to us that the only path we could choose for Charlie was the standard "arm". We had really wanted to be part of the study, to help future kids diagnosed with this dreadful illness but Charlie is too little and more importantly, too precious for us to risk the side effects and unknown long term damage to the body and mind. We already have to bear in mind that chemotherapy may be helping Charlie now but in the future,long term side effects can be serious and increasing this possibility isnt a chance we want to take.
On a much more positive note,it was Charlie's birthday on Friday and he was so excited to open his presents! He has enjoyed playing with all of the toys in turn and not surprisingly seems to go back to the noisiest ones! I decided that as it was a special day,Thomas could take the day off school to spend with his brother. So off we went to the shops and bought some cupcakes,sorry,buns and took them along to Charlie's playgroup for his little friends. The boys had a fantastic time and Charlie got so excited when all the other children sang Happy Birthday to him. The giddiness was short lived and he soon asked to go home as he was tired.
After a stressful week,we decided that we would go away for a short break and I quickly phoned up and booked somewhere close by with a beach! This was particularly interesting as it was the first time someone couldn't understand my accent and I had to spell everything out twice-aghh!!!
The boys were so excited,too excited in fact at times-you'd think we never took them away! There were storms Saturday morning so we decided to take them to a sealife centre which they loved. The sun soon came out and we had lunch by the coast and then headed to the rooftop pool at the apartment which overlooked the beach,heaven. Thomas practised his swimming strokes and Charlie sat on the side splashing anyone who passed (he was desperate to get in but public pools are a no no for him I'm afraid). We had a stroll along the seafront, and a play on the beach in the evening then the following day we spent it on another beach. It was so relaxing and great to watch the boys digging and splashing about in the sea and sand-not sure who was the biggest kid, them or their dad!
Last week was a tough week in many respects. I was fighting with the dreaded feelings of homesickness,experiencing migraines and all brought on by the stress of knowing Paul and myself had to make the huge decison concerning Charlie's future chemotherapy treatment and which path to take next.
Having no family around to support us makes life out here incredibly hard at times. I was use to living 10 minutes away from family and they would be on hand at the drop of a hat if I really needed them to be. Now though,we have to do things differently. Either just soldier on through it or.....Paul takes a day off work! I was insistant that I would be fine coping with the migraine and taking Thomas to school and looking after Charlie,when I knew full well I should rest. Thankfully Paul took the executive decision to not go into work and took over my childcare duties for the day. Life back home in England seemed so simple whenever this kind of scenario arose. Paul would go to work and I would call on family to help me out with the kids. We sometimes take people and life for granted and this experience has reconfirmed to me to appreciate what we have and not to take things and especially people for granted,ever.
So Tuesday arrived and it was D-day in terms of getting the information to decide which path to take with regards to his treatment. If dealing with the illness wasnt hard enough,we now, as his parents had to make what could potentially be the biggest decision ever-no wonder I had a migraine! We gathered the information and stored it away for reading once we got home.
Charlie meanwhile was undergoing a lumbar puncture,chemotherapy in his spine and then 2 more doses of chemo when he came out from theatre. He was really pumped up this week but hopefully its doing its job. I look at him and don't know where he gets his strength from because if that was me, I wouldn't be coping half as well as he is. Kids are so resilient and he just picks himself up and gets on with playing or fighting with his brother!
Things were a little different this week at the hospital. Charlie has become increasingly anxious about attending his appointments of late, which has been upsetting for all of us but terrifying for him. One of my friends in England had a fantastic idea and she had a bag specially made which is specifically for when we attend the hospital. The bag is beautifully personalised and he gets to choose a treat from it if hes a brave boy (every time he goes to the hospital).It worked wonders last week and the anxiety levels were definitely much lower so fingers crossed!
Once home we read the information relating to the clinical trail versus the standard route. After weighing up the pros and cons of each, it was evident to us that the only path we could choose for Charlie was the standard "arm". We had really wanted to be part of the study, to help future kids diagnosed with this dreadful illness but Charlie is too little and more importantly, too precious for us to risk the side effects and unknown long term damage to the body and mind. We already have to bear in mind that chemotherapy may be helping Charlie now but in the future,long term side effects can be serious and increasing this possibility isnt a chance we want to take.
On a much more positive note,it was Charlie's birthday on Friday and he was so excited to open his presents! He has enjoyed playing with all of the toys in turn and not surprisingly seems to go back to the noisiest ones! I decided that as it was a special day,Thomas could take the day off school to spend with his brother. So off we went to the shops and bought some cupcakes,sorry,buns and took them along to Charlie's playgroup for his little friends. The boys had a fantastic time and Charlie got so excited when all the other children sang Happy Birthday to him. The giddiness was short lived and he soon asked to go home as he was tired.
After a stressful week,we decided that we would go away for a short break and I quickly phoned up and booked somewhere close by with a beach! This was particularly interesting as it was the first time someone couldn't understand my accent and I had to spell everything out twice-aghh!!!
The boys were so excited,too excited in fact at times-you'd think we never took them away! There were storms Saturday morning so we decided to take them to a sealife centre which they loved. The sun soon came out and we had lunch by the coast and then headed to the rooftop pool at the apartment which overlooked the beach,heaven. Thomas practised his swimming strokes and Charlie sat on the side splashing anyone who passed (he was desperate to get in but public pools are a no no for him I'm afraid). We had a stroll along the seafront, and a play on the beach in the evening then the following day we spent it on another beach. It was so relaxing and great to watch the boys digging and splashing about in the sea and sand-not sure who was the biggest kid, them or their dad!
Thursday, 22 September 2011
Blog 9-Busy few weeks 23.9.11
The last few weeks have been particularly busy in the Barratt household with lots of ups and downs.
Thomas was very excited last week as it was his birthday. Where on earth have the last 6 years gone? For the first time ever, I was unable to arrange a party to celebrate him turning 6 but Thomas was fine with this (he got an extra gift as compensation). He got lots of lovely presents including a new fishing rod so him and Paul can go catch our dinner one night!
We had a lovely family day at the nearby mountain (Nebo) where we had a sausage sizzle and the boys made a paracute out of a carrier bag for Thomas's toy power ranger! They had so much fun and Paul's expertise in toy paracute making didn't go unnoticed! We had a lovely evening out with friends at the local bowls club last Friday(yes bowls club)! Its the closest thing to a pub where we can also get a chinese meal and all in walking distance from our house-bonus,no driving so more drinks to be had!
Last week wasn't so great for me.I had a few moments of utter worry and being scared about what if? I quickly pulled myself together and things are fine again now! Those dark moments are so scary but I suppose its something we have to deal with as its the reality of Charlie's illness. I just remind myself that his prognosis is good so fingers crossed we have no complications along the way.
Thomas has been on his school holidays for the past week and we have been busy going to the beach, meeting up with friends,going for picnics and going to the park. We're fortunate enough to have gorgeous weather at the moment with temperatures around 24C so being outdoors and away from too many people (for Charlies sake) is working out well. Another week of school holidays and I may go mad though!!!
We had lunch round at a friends house yesterday, then headed out to the hospital for Charlie's treatment whilst Tom stayed and played in the water with his friends. The school holidays are always a little tricky with childcare as I don't like Thomas to see what Charlie goes through plus its such a long,boring day sat there which again isn't fair on Tom.
Charlie screamed most of the way to the hospital, asking me not to take him.I managed to settle him then once we arrived at the ward,he started again. He was hysterical. There was nothing at all I could do to console him and it was a horrible experience whereby I felt so helpless and just wanted to take him away from it all. These kind of moments really hit me hard and make me wish I had my friends and family around for support.
We waited around to see the consultant and as I'd suspected,Charlie's neutrophil's (infection fighting) were low again this week. He has been fighting off a runny nose so we were told that this may have contributed to lower counts. The consultant informed me that his chemotherapy would not be able to be increased this week due to his low counts but he would still go ahead with the chemo,just at the same dose as last week. We spoke about Charlie's anxiety around coming to the hospital and the doctor said she would have a chat with our Occupational Therapist and ask her to do some work with us around this to try to alleviate some of his worries.
After seeing the consultant we waited around for the chemotherapy to be made up and then Charlie laid on the bed whislt the nurses hooked him up to the "robot" which again, he wasnt happy about but tollerated well considering. I had promised him some chips from the cafe downstairs as this was a special treat for being a brave boy,only to find that when we'd finished at 6.30pm, they were closed!
Never mind, we headed home and daddy's chips hit the spot. Charlie was just happy to be home and playing with his big brother again and I was just glad to be out of that horrible place!
Thomas was very excited last week as it was his birthday. Where on earth have the last 6 years gone? For the first time ever, I was unable to arrange a party to celebrate him turning 6 but Thomas was fine with this (he got an extra gift as compensation). He got lots of lovely presents including a new fishing rod so him and Paul can go catch our dinner one night!
We had a lovely family day at the nearby mountain (Nebo) where we had a sausage sizzle and the boys made a paracute out of a carrier bag for Thomas's toy power ranger! They had so much fun and Paul's expertise in toy paracute making didn't go unnoticed! We had a lovely evening out with friends at the local bowls club last Friday(yes bowls club)! Its the closest thing to a pub where we can also get a chinese meal and all in walking distance from our house-bonus,no driving so more drinks to be had!
Last week wasn't so great for me.I had a few moments of utter worry and being scared about what if? I quickly pulled myself together and things are fine again now! Those dark moments are so scary but I suppose its something we have to deal with as its the reality of Charlie's illness. I just remind myself that his prognosis is good so fingers crossed we have no complications along the way.
Thomas has been on his school holidays for the past week and we have been busy going to the beach, meeting up with friends,going for picnics and going to the park. We're fortunate enough to have gorgeous weather at the moment with temperatures around 24C so being outdoors and away from too many people (for Charlies sake) is working out well. Another week of school holidays and I may go mad though!!!
We had lunch round at a friends house yesterday, then headed out to the hospital for Charlie's treatment whilst Tom stayed and played in the water with his friends. The school holidays are always a little tricky with childcare as I don't like Thomas to see what Charlie goes through plus its such a long,boring day sat there which again isn't fair on Tom.
Charlie screamed most of the way to the hospital, asking me not to take him.I managed to settle him then once we arrived at the ward,he started again. He was hysterical. There was nothing at all I could do to console him and it was a horrible experience whereby I felt so helpless and just wanted to take him away from it all. These kind of moments really hit me hard and make me wish I had my friends and family around for support.
We waited around to see the consultant and as I'd suspected,Charlie's neutrophil's (infection fighting) were low again this week. He has been fighting off a runny nose so we were told that this may have contributed to lower counts. The consultant informed me that his chemotherapy would not be able to be increased this week due to his low counts but he would still go ahead with the chemo,just at the same dose as last week. We spoke about Charlie's anxiety around coming to the hospital and the doctor said she would have a chat with our Occupational Therapist and ask her to do some work with us around this to try to alleviate some of his worries.
After seeing the consultant we waited around for the chemotherapy to be made up and then Charlie laid on the bed whislt the nurses hooked him up to the "robot" which again, he wasnt happy about but tollerated well considering. I had promised him some chips from the cafe downstairs as this was a special treat for being a brave boy,only to find that when we'd finished at 6.30pm, they were closed!
Never mind, we headed home and daddy's chips hit the spot. Charlie was just happy to be home and playing with his big brother again and I was just glad to be out of that horrible place!
Sunday, 4 September 2011
Blog 8-My birthday weekend!! 5.9.11
The last 2 weeks have been much rosier for the Barratt family. We had to say a sad farewell to my mum and dad and the boys have really missed them not being around. Charlie kept forgetting they'd gone, and often shouted for grandad to come and play with him!
Charlie was unable to go ahead with his treatment until last week due to his neutrophils being a little too low so we had 3 weeks off from the hospital which gave us some sense of normality. However, it was great that he was able to go ahead last week with his treatment (I say "great" as its something he has to have to make him better but I know its not really great to wish your child to go ahead and have a lumbar puncture and chemotherapy)!
He was a very upset little boy who begged me not to take him. Once I started up the car engine I heard this little voice say "Dont go mummy,I dont like hospital". It was a very hard day for both of us and by the time we got home in the afternoon, I was exhausted with all the reasurrance I tried to give him throughout the procedures he had.Charlie on the other hand, was full of beans, busy running round playing games with Thomas!! He is so resilliant and just gets on with what he has to,though he tires very easily.
Friday was playgroup day and Charlie was lively and energetic so we went along and had a lovely morning. It was just what was needed after Thursday being so intense and distressing. A few of the mums came up to us and asked how things were going with his treatment which is lovely of them to care, but sometimes I wish we could just blend in. Whilst he has a bald head, I think thats out of the question! I was a little concerned about Charlie getting any colds,coughs or worse from playgroup but things seem fine and we were glad we went along.Its so important we try to keep things are normal as we can when hes well not only for his sake, but for all of us and attending playgroup does just that.
Saturday was my birthday-21 again before you ask! And I was so overwhelmed by the thought Paul had put into my gifts. Amongst them, he had bought a canvas with a beautiful picture of the boys beaming with laughter on it from a holiday we had in Budle Bay,Northumbria last year. They looked like they didnt have a care in the world and were so happy. The picture has so much meaning to it and just made me cry!
Saturday evening, and we went to the fireworks display arranged by Brisbane council to celebrate my birthday. Oh ok, they were for the riverfire display they put on every year. Thomas asked how they knew it was my birthday though so I played along with it and told him daddy had rung them up to tell them. We went to Paul's office to enjoy the display and it was amazing. Thomas and Charlie loved the fireworks and I was later told that Thomas was telling 2 little girls he'd befriended why his brother had no hair. He explained that he had cancer and that hes given medicine at the hospital and the medicine doesnt know whether to kill the good cells or bad ones so it kills all of them....I hadnt realised he had taken any of the information in we'd been telling him so this was good to hear but also not really the right setting,bless him!
We spent Sunday busily socialising,making the most of Charlie being well. We visited some friends in the morning and then went to a BBQ at the local mountain with a friend I'd made through school. It was a lovely day and the children played happily whilst we chatted and ate!
Thomas is back to school today and was excited to do his "Show and Tell" on the Riverfire display we saw at the weekend. Charlie and I had a coffee break in Paddington with one of the new friends I'd made and then came home to the cleaning! So as you can see, all's very normal and boring with us at the moment.Just the way I like it!!
Charlie was unable to go ahead with his treatment until last week due to his neutrophils being a little too low so we had 3 weeks off from the hospital which gave us some sense of normality. However, it was great that he was able to go ahead last week with his treatment (I say "great" as its something he has to have to make him better but I know its not really great to wish your child to go ahead and have a lumbar puncture and chemotherapy)!
He was a very upset little boy who begged me not to take him. Once I started up the car engine I heard this little voice say "Dont go mummy,I dont like hospital". It was a very hard day for both of us and by the time we got home in the afternoon, I was exhausted with all the reasurrance I tried to give him throughout the procedures he had.Charlie on the other hand, was full of beans, busy running round playing games with Thomas!! He is so resilliant and just gets on with what he has to,though he tires very easily.
Friday was playgroup day and Charlie was lively and energetic so we went along and had a lovely morning. It was just what was needed after Thursday being so intense and distressing. A few of the mums came up to us and asked how things were going with his treatment which is lovely of them to care, but sometimes I wish we could just blend in. Whilst he has a bald head, I think thats out of the question! I was a little concerned about Charlie getting any colds,coughs or worse from playgroup but things seem fine and we were glad we went along.Its so important we try to keep things are normal as we can when hes well not only for his sake, but for all of us and attending playgroup does just that.
Saturday was my birthday-21 again before you ask! And I was so overwhelmed by the thought Paul had put into my gifts. Amongst them, he had bought a canvas with a beautiful picture of the boys beaming with laughter on it from a holiday we had in Budle Bay,Northumbria last year. They looked like they didnt have a care in the world and were so happy. The picture has so much meaning to it and just made me cry!
Saturday evening, and we went to the fireworks display arranged by Brisbane council to celebrate my birthday. Oh ok, they were for the riverfire display they put on every year. Thomas asked how they knew it was my birthday though so I played along with it and told him daddy had rung them up to tell them. We went to Paul's office to enjoy the display and it was amazing. Thomas and Charlie loved the fireworks and I was later told that Thomas was telling 2 little girls he'd befriended why his brother had no hair. He explained that he had cancer and that hes given medicine at the hospital and the medicine doesnt know whether to kill the good cells or bad ones so it kills all of them....I hadnt realised he had taken any of the information in we'd been telling him so this was good to hear but also not really the right setting,bless him!
We spent Sunday busily socialising,making the most of Charlie being well. We visited some friends in the morning and then went to a BBQ at the local mountain with a friend I'd made through school. It was a lovely day and the children played happily whilst we chatted and ate!
Thomas is back to school today and was excited to do his "Show and Tell" on the Riverfire display we saw at the weekend. Charlie and I had a coffee break in Paddington with one of the new friends I'd made and then came home to the cleaning! So as you can see, all's very normal and boring with us at the moment.Just the way I like it!!
Tuesday, 23 August 2011
Blog 7-My parents visit for 3 weeks 24.8.11
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.
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.
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...?
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