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...?
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!
Thursday 28 July 2011
Blog 4-29.7.11 Treatment continues
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!
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!
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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