Thursday, 25 April 2013
More pictures of our legoland hotel and view from our room!
I'm posting several blogs if pictures as the order gets mixed up when posted for some reason!
Sunday, 21 April 2013
Sunday April 21st
Well what an amazingly busy time we have had since my last blog!
My last entry ended with us about to visit Martin House Hospice. The boys loved it there. They went straight outside to play whereby Callum saw a wooden fire engine and very quickly also found a garden hose to put out fires with! The garden is massive, with many footpaths to explore, space to play football and a giant sand pit!
In the afternoon Harry found the music room and as expected loved the full size drum kit and was actually quite good! It was hard though realising why we were there, not just a visitor, but a service user, taking in the surroundings and thinking about the suitability of Harry eventually ending his days there. It felt sad, surreal, but also joyful that the boys loved it so much. The food was excellent too. I talked to a worker about the services we currently have and the fact that we are still open to the continuing care team, but don't currently use the staff as there was little continuity with the nurses, but was quick to point out that when Harry is doped up on morphine for pain management then I guess it won't matter so much if he is not familiar with the staff. The worker thought I had thought about everything with regards Harry's future care needs, but I guess I have already witnessed Harry being lifeless and doped up on morphine at various points during his treatment, so I can picture what the end will be like.
With regards using Martin House, we will make a visit again and I am keen to speak to the psychologist (she was busy when we went), but possible once a month on a weekend. Whilst Harry is well enough to go to school, then that is where he should be, when we are not on our adventures!
So we had our big trip to Legoland. We flew down, which the boys thought was immensely exciting. We hired a car at the other end and got to legoland for 2.15 pm last Sunday! The reception area was initially enough for the boys, they were greeted by a paddling pool sized area filled with loose bits of lego for them to play with. Since our room was not ready, we left our luggage in the concierge bit and headed straight into the park. We managed to obtain a queue jumping pass, which was brilliant as the park was busy. We managed to get on 8 major rides before the park closed at 6. I really wasn't sure if the boys would want to partake in the rollercoaster and log flume, but they did! It's not Alton Towers, but the rides were enough for a 3 and 5 year old. I'd forgotten how much I enjoyed theme parks and I felt that childish, happy feeling, which I haven't felt for so long!
Having had a busy day, we ventured up to our room, before getting tea. The pirate room was amazing. What was great about it was although we were all in one room, the boys had bunk beds at one end and we were separated by the ensuite, meaning we could stay up and read on a night time without disturbing the boys.
The restaurant was brilliant too, we avoided the overpriced Buffett and went for the bar meals. Despite food taking an hour to come, the boys were blown away with the outdoor playground, where we could see them playing from the bar, the indoor play area and in house entertainment! Sorted, this meant mummy and daddy could relax and enjoy a well earned drink. Huge sigh of relief and that warm feeling that the break was going to be a big success!
The boys in fact slept well and quickly fell asleep through shear exhaustion, but happy!
We had 3 nights in legoland, we managed to explore the whole park, enjoy the very successful pirate show twice, bought some lego, went on just about every ride, some more than once and tantrums by all were very minimal! So a huge success. We have a massive thank you to say to the Starlight Foundation who organised and paid for it. I had never realised how important holidays are for families either with terminally ill children or those with significant illnesses where every day life is interrupted so much and family time minimal.
The trip did so much to reunite our family in so many ways. Yes, we have photos with us smiling on previous days out or in Filey last summer, but Harry wasn't really that well or energetic and so the good times were minimal. In legoland Harry and Callum had a ball. Harry did have leg pain a bit, but calpol and some dyhydrocodine soon solved that, so maximum enjoyment could be had.
Yes, there were many occasions where we had big lumps in our throats and our eyes stinged with tears, such as when Harry was grinning from ear to ear and we are reminded that this type of enjoyment will be short loved, or when Harry and Callum are tightly holding hands, looking out for each other and we know this huge bond they have will be lost too.
I feel my family is complete, just the way we planned. We spent several years saving and developing our careers prior to having children, so we could provide well for them. However, you can never plan for everything. Childhood cancer has bitten us on the bum and turned our lives round and our secure family unit is well and truly threatened. If I could bottle the legoland experience I would, I'd be a rich lady too as our recent adventure has produced the best smiles, proper laughter and that awesome carefree feeling!
Photos to follow!
My last entry ended with us about to visit Martin House Hospice. The boys loved it there. They went straight outside to play whereby Callum saw a wooden fire engine and very quickly also found a garden hose to put out fires with! The garden is massive, with many footpaths to explore, space to play football and a giant sand pit!
In the afternoon Harry found the music room and as expected loved the full size drum kit and was actually quite good! It was hard though realising why we were there, not just a visitor, but a service user, taking in the surroundings and thinking about the suitability of Harry eventually ending his days there. It felt sad, surreal, but also joyful that the boys loved it so much. The food was excellent too. I talked to a worker about the services we currently have and the fact that we are still open to the continuing care team, but don't currently use the staff as there was little continuity with the nurses, but was quick to point out that when Harry is doped up on morphine for pain management then I guess it won't matter so much if he is not familiar with the staff. The worker thought I had thought about everything with regards Harry's future care needs, but I guess I have already witnessed Harry being lifeless and doped up on morphine at various points during his treatment, so I can picture what the end will be like.
With regards using Martin House, we will make a visit again and I am keen to speak to the psychologist (she was busy when we went), but possible once a month on a weekend. Whilst Harry is well enough to go to school, then that is where he should be, when we are not on our adventures!
So we had our big trip to Legoland. We flew down, which the boys thought was immensely exciting. We hired a car at the other end and got to legoland for 2.15 pm last Sunday! The reception area was initially enough for the boys, they were greeted by a paddling pool sized area filled with loose bits of lego for them to play with. Since our room was not ready, we left our luggage in the concierge bit and headed straight into the park. We managed to obtain a queue jumping pass, which was brilliant as the park was busy. We managed to get on 8 major rides before the park closed at 6. I really wasn't sure if the boys would want to partake in the rollercoaster and log flume, but they did! It's not Alton Towers, but the rides were enough for a 3 and 5 year old. I'd forgotten how much I enjoyed theme parks and I felt that childish, happy feeling, which I haven't felt for so long!
Having had a busy day, we ventured up to our room, before getting tea. The pirate room was amazing. What was great about it was although we were all in one room, the boys had bunk beds at one end and we were separated by the ensuite, meaning we could stay up and read on a night time without disturbing the boys.
The restaurant was brilliant too, we avoided the overpriced Buffett and went for the bar meals. Despite food taking an hour to come, the boys were blown away with the outdoor playground, where we could see them playing from the bar, the indoor play area and in house entertainment! Sorted, this meant mummy and daddy could relax and enjoy a well earned drink. Huge sigh of relief and that warm feeling that the break was going to be a big success!
The boys in fact slept well and quickly fell asleep through shear exhaustion, but happy!
We had 3 nights in legoland, we managed to explore the whole park, enjoy the very successful pirate show twice, bought some lego, went on just about every ride, some more than once and tantrums by all were very minimal! So a huge success. We have a massive thank you to say to the Starlight Foundation who organised and paid for it. I had never realised how important holidays are for families either with terminally ill children or those with significant illnesses where every day life is interrupted so much and family time minimal.
The trip did so much to reunite our family in so many ways. Yes, we have photos with us smiling on previous days out or in Filey last summer, but Harry wasn't really that well or energetic and so the good times were minimal. In legoland Harry and Callum had a ball. Harry did have leg pain a bit, but calpol and some dyhydrocodine soon solved that, so maximum enjoyment could be had.
Yes, there were many occasions where we had big lumps in our throats and our eyes stinged with tears, such as when Harry was grinning from ear to ear and we are reminded that this type of enjoyment will be short loved, or when Harry and Callum are tightly holding hands, looking out for each other and we know this huge bond they have will be lost too.
I feel my family is complete, just the way we planned. We spent several years saving and developing our careers prior to having children, so we could provide well for them. However, you can never plan for everything. Childhood cancer has bitten us on the bum and turned our lives round and our secure family unit is well and truly threatened. If I could bottle the legoland experience I would, I'd be a rich lady too as our recent adventure has produced the best smiles, proper laughter and that awesome carefree feeling!
Photos to follow!
Wednesday, 10 April 2013
wednesday 10th April.
Harry's platelets remain at the score of 54, so creeping up very slowly, but still too low to be eligible for any further treatments. So no decision making yet, though still fairly sure the palliative route is what we feel is best. Harry has put on weight, which is brilliant. Since no further treatment is viable, then we can reduce his medications, as his immune system isn't going to immediately plunge with more chemo, so this is good too. Harry's consultant was really pleased with how fantastic he is at the moment, yes he has the occasional twinge in his legs, but nothing calpol can't fix at the mo! So currently we can make the most of life with Harry. It is very hard though at times, because our minds cannot get away from the fact that Harry is slowly dying, but we are doing our best to take each day as it comes and make them count. Yesterday, Harry visited daddy's work and sat in a police helicopter, he was grinning from ear to ear as you can see from the pictures in the previous blogg entry. He also got to sit on a police motorbike, see the horses and an unmarked car, most boys dream of this!
We have been really busy over the last week, Harry and Callum have been to Hesketh Farm, where they saw 2 lambs being born, we also met up with friends at the Ice Cream parlour. Harry's been swimming, which is an immense thing still as Harry remains without his NG tube. We have been to Whitby, which certainly had the chill factor on the beach, but the boys were togged up in snow suits, again you can see them in the sand in the previous blogg! Harry has also helped drive a steam train at Embsy, curtesy of a friend of Paul's whose son is a volunteer there. Friends stayed over at the weekend too. This was good as well as hard, as when friends have known us years and Harry since he was born, we can see their disbelief and pain that Harry will only be with us a short time.
Harry currently adores his remote controlled aeroplane given to him by his friend Seth, he loves flying it! Definately his father's son, which I think makes it all the more difficult for Paul to come to terms with the eventual loss of Harry. To see him so well, its hard to believe the cancer is there, but it is.
Tomorrow we are taking the boys to Martin House Hospice for the day, for them to see what goes on there and become familiar with the environment. I have told Harry that it is a place whereby he can have transfusions if ever needed again, or treatment for pain if his legs hurt aain, as an alternative to hospital and emphasized all the fun things they have going on. Fingers crossed he'll love it. The music therapist is in tomorrow and they have a great set of drums I know Harry is looking forward to banging!
We have our trip to legoland planned for next week. The boys are super excited. We pray that Harry can remain well for the next few weeks, even months, so we can continue our adventures with him. However, to get Harry into school, continue with routine and life as it should be, is also a must. Harry loves his friends and doing the things all 5 year olds boys do. May the sunshine continue!
Sunday, 31 March 2013
Easter Day
Well Easter Day last year was on 8 th April and Harry was in LGI having chemotherapy to stimulate his stem cells production in readiness for harvesting his stem cells.
This year we should be celebrating having the rest of our lives ahead ofus, however as you know Harry's scan showed that he has 3 hotspots of cancer growing within him.
Despite frequently thinking and being aware of how high relapse is in Neuroblastoma cases, actually being faced with the knowledge that our child has relapsed is very different. The intensity of grief we felt last weekend is indescribable. We felt Harry had died already, yet he was still with us, smiling and able to have fun. So it felt like a parallel universe to be grieving for the anticipated loss of our son, but at the same time having our boys still laughing, fighting and happy!
We went to the Moscow State Circus last Sunday afternoon, this was an amazing performance, enjoyed by all 4 of us. To see Harry laugh and talk so much about it afterwards is priceless!
Callum was mesmerised and remained sat still between his seat and my lap, throughout, this does not often happen for Mr Rigglepants!
The circus gave us a boost and reminded us of the need to pack as many trips and fun times in as possible over the coming weeks/months.
Our mood has fluctuated incredibly and the evenings and the middle of the night thoughts can be the worst. Waking up in the morning is not fun either, as you open your eyes, feel good for a split second, but then remember, oh yes my son had been given a life sentence of cancer.
Harry has been to school this week and really enjoyed it. He is making his mark on the school community. He seems to frequently play games with year 2, pairing up with his new best bud Seth, whereby they seem to start games that encourage many year 2 boys to join in! Harry is a larger than life character and he has got his Mo Jo back after so much gruelling treatment. This is wonderful to witness, but at the same time tinged with sadness that his life expectancy will be so short. I feel he has the ability to be anything he wanted in life and would have made a great contribution to society.
Harry had his bloods taken on Wednesday to see what the scores on the doors were. Paul and I also went to visit Martin House hospice. We felt it is definately a resource that we will use. We can all stay there for respite care and the whole family is looked after, which we will need at some of the very stressful points as Harry will need his pain management controlled. He can also die there and it felt like the right place too for Harry to end his life as we will all be supported in the hours/ days following the biggest loss we will have had to endure yet. Yes, during Harry's treatment I did contemplate Harry dying. Every parent who has a child with cancer contemplates this st some point and mentally plans their funeral. Again I have mentally thought about Harry's funeral, this time acknowledging the reality of planning this.
With so many things to think about, we were actually relieved that Harry's bloods were too low thus week to have to make any decisions on whether we should be giving him any more chemotherapy to try and prevent the cancer spreading so quickly. Our brains hurt as it is. Though in all honesty Paul and I agree that Harry has been through enough toxic treatment and at present we agree enough is enough. We can't face the prospect of him having any more chemotherapy that will make him sick, lose his appetite, affect his bloods and lead to him needing more transfusions. The end result will be the same, there is no treatment as yet that will cure a relapsed Neuroblastoma cancer case.
This week Harry has had the odd cramp and twinge, but had remained well enough to fully participate in life.
Yesterday I took Harry and Callum swimming, then we went to Harlow Carr and met friends to complete their Easter trail. Harry was racing around with his friends, a joy to see. We ended the day by having tea at Gusto's Italian with our friend Janey. Harry was still full if it when we returned home at 7 pm and was keen to tell daddy who had been working all about our day.
Today we have been to church, had lunch with Granny and Grandad and then met Seth and Eli to fly planes on the field opposite my parents house. Whether its the chocolate or the fact Harry is high on life at the moment, well he remained giddy till he was in bed!
So long may the good times continue, we will treasure every moment.
You never know what tomorrow will bring, but you can make the most of today and make it count!
We have a starlight, make a wish granted and intend taking Harry to legoland. We will be organising this sooner rather than later to add to our bank of memories.
This year we should be celebrating having the rest of our lives ahead ofus, however as you know Harry's scan showed that he has 3 hotspots of cancer growing within him.
Despite frequently thinking and being aware of how high relapse is in Neuroblastoma cases, actually being faced with the knowledge that our child has relapsed is very different. The intensity of grief we felt last weekend is indescribable. We felt Harry had died already, yet he was still with us, smiling and able to have fun. So it felt like a parallel universe to be grieving for the anticipated loss of our son, but at the same time having our boys still laughing, fighting and happy!
We went to the Moscow State Circus last Sunday afternoon, this was an amazing performance, enjoyed by all 4 of us. To see Harry laugh and talk so much about it afterwards is priceless!
Callum was mesmerised and remained sat still between his seat and my lap, throughout, this does not often happen for Mr Rigglepants!
The circus gave us a boost and reminded us of the need to pack as many trips and fun times in as possible over the coming weeks/months.
Our mood has fluctuated incredibly and the evenings and the middle of the night thoughts can be the worst. Waking up in the morning is not fun either, as you open your eyes, feel good for a split second, but then remember, oh yes my son had been given a life sentence of cancer.
Harry has been to school this week and really enjoyed it. He is making his mark on the school community. He seems to frequently play games with year 2, pairing up with his new best bud Seth, whereby they seem to start games that encourage many year 2 boys to join in! Harry is a larger than life character and he has got his Mo Jo back after so much gruelling treatment. This is wonderful to witness, but at the same time tinged with sadness that his life expectancy will be so short. I feel he has the ability to be anything he wanted in life and would have made a great contribution to society.
Harry had his bloods taken on Wednesday to see what the scores on the doors were. Paul and I also went to visit Martin House hospice. We felt it is definately a resource that we will use. We can all stay there for respite care and the whole family is looked after, which we will need at some of the very stressful points as Harry will need his pain management controlled. He can also die there and it felt like the right place too for Harry to end his life as we will all be supported in the hours/ days following the biggest loss we will have had to endure yet. Yes, during Harry's treatment I did contemplate Harry dying. Every parent who has a child with cancer contemplates this st some point and mentally plans their funeral. Again I have mentally thought about Harry's funeral, this time acknowledging the reality of planning this.
With so many things to think about, we were actually relieved that Harry's bloods were too low thus week to have to make any decisions on whether we should be giving him any more chemotherapy to try and prevent the cancer spreading so quickly. Our brains hurt as it is. Though in all honesty Paul and I agree that Harry has been through enough toxic treatment and at present we agree enough is enough. We can't face the prospect of him having any more chemotherapy that will make him sick, lose his appetite, affect his bloods and lead to him needing more transfusions. The end result will be the same, there is no treatment as yet that will cure a relapsed Neuroblastoma cancer case.
This week Harry has had the odd cramp and twinge, but had remained well enough to fully participate in life.
Yesterday I took Harry and Callum swimming, then we went to Harlow Carr and met friends to complete their Easter trail. Harry was racing around with his friends, a joy to see. We ended the day by having tea at Gusto's Italian with our friend Janey. Harry was still full if it when we returned home at 7 pm and was keen to tell daddy who had been working all about our day.
Today we have been to church, had lunch with Granny and Grandad and then met Seth and Eli to fly planes on the field opposite my parents house. Whether its the chocolate or the fact Harry is high on life at the moment, well he remained giddy till he was in bed!
So long may the good times continue, we will treasure every moment.
You never know what tomorrow will bring, but you can make the most of today and make it count!
We have a starlight, make a wish granted and intend taking Harry to legoland. We will be organising this sooner rather than later to add to our bank of memories.
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