Harry was discharged home Sunday. He was disconnected from all machines in the morning and once he had woken up and come round, he was racing round his room like a loony tune! We were awaiting the doctor to review Harry as only the night before, the discharge date was going to be Monday. Since Harry presented so well he was allowed to go home in the afternoon. This was great news. My parents had visited with Callum, as I wasn't sure when discharge would be. Callum had a great time racing around the ward and proposition a bemused doctor with a petrol pump, which he decided was a joker soaker. With relief i packed Harry's room up, including all the decorations he had made and we get home around 4, just as CAllum comes home from creepy crawley party, one where there are insects, spiders, reptiles and rabbits to touch. He had a fabulous time. Both boys giddy, i unpack, which is always very time conuming, whilst my parents stay and entertain the boys. Paul is working and has managed to complete all his shifts, whilst Harry has been in hospital, which has meant I have done all the time in hospital this episode.
Hopsital was hard, dealing with all the side effects Harry had from the drugs. The pain was hard for Harry to endure at times, as it was for me to watch. However, with a hospital team around us, our private room as well, hospital in many ways wasn't so bad and i just try and get on with it and focus on Harry.
However, being at home is soooooo much harder. The fantasy is, that it is all roses, happiness and fun. The reality is that as Paul carries on with the rest of his set of 7 shifts, I'm the main one dealing with the aftermath of a hospital stay. This leaves Harry in the centre of attention mode, very demanding, it leaves Callum demanding for my attention as he has hardly seen me too. I want to scream get me out of here and there is a competition as to who can have the loudest tantrum, me included, not very good parenting I know, but perhaps come Monday, the week of sleepless nights, the worry and stress of managing Harry's side effects, the fact that Harry never started on a particular pain killer prior to his treatment called gabapentin, that he should have done, angers me, as i begin to reflect on the past week of events. Harry was so well prior to this admission, he was rocking on life! As said, Sunday he was running around like a loony, but i think he exhausted himself. He is also having a come down from morphine, which can give you mood swings. He is fatigued from the treatment, still having slight intermittant pain in his joints. He cries at the drop of a hat when things don't go right for him, its exhausting. On Monday I was thankful we had a nurse coming for a couple of hours in the afternoon to look after Harry. He was so exhausted come Monday lunchtime, so tearful, screaming about everything, but I managed to get him to go back to bed and he fell asleep. This enabled me to take Callum out to the park, whilst the nurse sat with Harry. This was lovely to have time just with Callum. Harry was in a better mood when I arrived back fortunately. At 6.15pm, the boys were actually playing nicely together, but bedtime alas! However, tears returned for Harry as bathtime ended and Harry was clearly exhausted again.
We never saw Harry's consultant last week, not sure if she was off, so I never got the chance to pursue the fact Harry was missed on getting the gabapentin, prior to treatment. I discussed it with another doctor, junior to our consultant and he thought that Harry should have been on it a week prior to the commencement of the immunotherapy. The charge nurses I felt was trying to cover up and said well sometimes they are started on it and sometimes they are not. I think again Harry has just been forgotten, like when the retests were rushed through prior to radiotherapy. I am now following up this fundamental flaw. We will never know how much the drug would have limited Harry's pain, he didn't start it until the Wednesday and then doses are built up, so the effects of this drug not really felt this time, but he is renaining on it until March, so it can't be forgotten! I think on reflection I feel angry that Harry probably went through greater pain than need be. This upsets me too. I think in general this week my emotions are all over the place. Possible also due to the fact I now realise that this immunotherapy can never be given as a day patient, as the ammount of infusions through Harry's port are too great, plus the morphine infusion too. The treatment can only be managed through a hospital stay. I had been told that perhaps, Harry could have the treatemennt as an outpatient later on, if the side effects were more minimal. I think the information I was being told was for the drug that Harry was put in for, but the computer said no, that would have been an injection and that could have been administered as a day patient after the first couple of sets of treatment. Maybe I got the info mixed up? Anyway, the implications are that every 4 th week, till March Harry will be hospitalised. This therefore has a real impact on my ideal to return to work. Couple this, with the fact I am only getting Harry into school for a few hours a day, I have no childcare anyhow to be able to work. Harry should be well enough to go to school much of next week and I have pushed for the school to be signed off giving Harry his medicines tomorrow, yay, but no yay on the other hand. I will explain. Prior to this hospital stay Harry was on 1 medication at lunch time, so the school knew this, but as always with a hospital stay Harry has come home with more medicine to take! His magnesium levels are low, so he is back on this 3 times a day, then there is the gabapentin, this is 3 x day too and it needs to be kept in a fridge. Well on discussion with the community nurse, she says the school will only administer 1. Well I blow my top, what difference does it make giving all 3!!!!!!! After much discussion, I conclude that the magnesium could be given after school, as long as the 3 doses are got in, it does not matter so much on the spacing out of this. The gabapentin, needs to be evenly spaced though, but the nurse is adamant on the softly, softly approach, where i am always a lets go straight in there kind of person! Anyway, since Harry is unlikley next week to start school till 10.15 am, I agree to give the gabapentine after school too, however, this is because there is only next week then its half term, then Harry is in hospital for a week, so by the time he returns mid November, I then want the nurses to push Harry having the gabapentine, as I am hoping he may start school sometimes at 9! The medication the school will give is needed 4 x day, so definately needs to be given at lunch time. The nurses did query this one, but when I asked how do I fit 4 x day in, if lunch time is missed, there was no answer! So nothing is easy as always.
The other thing is that Harry doesn't want to go to school now, as he has missed it for a period and going in again, means resettling. I am sure he'll like it when he gets there!
So this week I feel an emotional wreck, tearful at times, as i come to terms with being unlikley to realisticly get back to work until March next year, though I am still thinking of other child care avenues. I feel I have lost my identity, lost my self esteem, lost myself really. Maybe the past year is taking its toll as we keep trying to plough on. And it is a year. 10.10.11 is the day Harry's leg pain kicked in, I dismissed it as cramp! The sleepless nights set in with avengence then and we have not had many nights in the past year that we have not had an undisturbed night. If Harry actually sleeps well, then you can bet his feed machine beeps for some reason. Like last night, Paul was working nights, I want an early night, but sadly disturbed at 11.45pm by a beeping feed machine. It took me 30 minutes to sort out, having tried all the usual techniques, I had finally put a new feeding tube on, which sorted it. However, though exhausted I had an array of strange dreams, so woke up none the less benefitted sadly and my temper and tolerence is much shortened! Though again this afternoon, I had a nurse provide a couple of hours respite and I met a freind for coffee, Callum was in nursery. This was lovely, but the house is in a tip and paperwork, which only Paul and I can deal with is gradually becoming probably the best centre for a bonfire, we just need a Guy!
I think extreme fatigue is to blame, but again loss of my fantasy of working and creating some normality for another few months. In my heart i guess I know work is unlikley, but I find it hard to be a stay at home mum and need distraction. I know emotionally I am not at a point currently of being fit for work. I keep thinking it will get easier, but each treatment has its own set of rules and we have to try and adapt to them and the way they knock Harry each time. I do also find myself wandering what life will hold for us at the end of this. It could be likley that Harry still needs regular transfusions of red blood or platelets for months following the so called end. Plus the regular 3 monthy retests. I guess as the end nears and thoughts progress to life beyond the hospital and that one should return to work and life resumes, then that also scares me. Although I want to resume to 'normaility' I am not the same person I was, you can't be. As much as I don't want to dwell on Harry's cancer journey for the rest of our lives, nor do I want people to be dismissive of the journey that rocked our boat and turned our world upside down. I find that hard now, for example I said to someone that I never thought Harry would start school and the response was, well he has and he is here now,end of! As much as there is a time and place for dwelling on the past, I find this hard, as to gloss over the last year, as if the journey has not happened, to me is to deny the fight Harry and ourselves have gone through and made Harry the boy he is today.
We have started back on Harry's retinoic aid, which is in tablet form and has to be taken morning and eveing for 14 days. I don't think I have gone into the administration of this before, but apologise if I have. Harry had 3 tablets to take initially each twice a day, but as he has thankfully gained weight, he now has 4 tablets to take morning and evening. Since swallowing these tablets about the size of an olive oil capsule is not an option, the original plan was as told by the pharmacist, was to cut the top off the tablet, squeeze the contents out into yoghurt, stir and voila, Harry swallows the mixture. However, the first administration of this back in September was up there in comedy classics! I had rubber gloves on, which is a must to protect my skin, the centre which is jelly and not oil is very hard to extract, getting a skewer I try and scrape the contents out, but most ends up on my glove and the slippery tablet the other side of the room! There I am worrying that if I can't get the content out, then Harrys cancer will just come back, I am also worrying how long the contects is exposed to light, as this slowly weakens the effectiveness of the drug! I therefore abandon the job after the first tablet and yes, despite being told children won't swallow these tablets, I say to Harry he has to swallow it!!!! So i put the tablet in his mouth, with yoghurt and tell him to drink is juice! He won't swallow it and he is in tears, I am as said worried about the whole affair and his cancer returning. However, we have a break through, Harry cracks the tablet with his teeth, gets the content out with his tonge, I spoon yoghurt into his mouth, he then spits the shell out, Voila! Job done and he repeats that step with each tablet, cracking them with his teeth and spitting the empty shell out. Harry is such a good lad at times, it save me having one nervous breakdown anyhow!!!! It also means Harry is getting the entire content of the drug and I feel more relaxed, that we are doing everythinng to prevent his cancer returning!
On reflecting the past week of events, I also reflect on the many doctors we come across. I could write a dissertation on the rightful treatment of patients and that they are people and not just a figure to be treated! Doctors need a new module in their training, how to be empathetic, respectful and person centered! We do have the lovely Kevin, who is a top oncology doctor, who I hope makes a consultant one day. He has all the right qualities. He talks to Harry, includes him in the consultation, asks him where the pain is, he also remembers and knows Harry's history! The junior doctors who have just started in August have soooooo much to learn. I have probably said this before too, but I question whether some have been dragged off the street, as their knowledge appears to be minimal. The doctor who saw Harry at the weekend, to be fair was not an oncology doctor, but more the need to read Harry's notes before entering. She didn't know what medicines Harry was on, she didn't know that we had the resuts of his cultures, saying that there was no infection present, in fact she denied the cultures could possible be assessed, thinking his first temperature was the night before not Tuesday night! She had no idea really about the plan for Harry, the protocol as to when his hydration infusion should end, she also had a poor ability to engage with Harry. Admittedly he was grumpy at the time! Then there is the docor who is summoned to reassess Harry medically in the middle of the night. I am awoken to take part in this of course! Half asleep I hold Harry's hand whilst he cries in disagreement at being prodded at 1.30 am as his oxygen levels are lower than they should be. Oxygen is wafted in front of his face to bring his sats up. My eyelids keep drooping to close and the doctor asks me if I have any questions, my only one is, can I go back to bed! There are too many instances to jot down here of doctors coming at meal times for example and wanting to poke Harry, they say they can't come back and Harry just ends up upset, the last time this happened I put my foot down and the doctor had to wait the 5 minutes until Harry had finished lunch, then he was very ammeniable and the job was probably finished in the same amount of time, to had she purseued her first attempt, a screaming Harry would have taken longer and harder to assess! I often think about people in hospital alone, without anyone to advocate for them, often poeple with dementia or a learning disability or too unwell to speak up. I often think of the patient labelled as aggressive, if they would be so, if more empathy, understanding and timely assessmennts by doctors were made. Inteventions are invasive and often approached very matter of factly and obviously necessary, but the way they are expedited effects the patience whole experience. I know it can't always be exactly how it should be, but if most of the time it was, that would be a great leap forward!!!!!!
So as I witter on and on, I feel better for writing this all down. I started writing this with tears rolling down my cheeks and finish having I think counselled myself to some degree, well until tomorrow and the kids awake screaming at me. Again that pile of paper work is still there, but I think it is vino and relax time now! Sometimes i think of post traumatic stress disorder and to some degree, I think that I diagnose myself as having that. Each treatment is like a trauma and as life evens out afterwards, it enables me time to reflect, I get angry at the suffering Harry has to endure, get cross with the systems I have to deal with, I try and re evaluate where life is for us and deal with the loss of my fantasy of 'normaility', working etc, anything but being a stay at home mum. I think, if life was even, then actually being a stay at home mum, does actually have its advantages and I could like it, but if life was even, Harry would be in school mon to fri, I would have time just with Callum, he would be approaching getting his 15 hours a week free nursery place come January and I would have a few hours to be entirely me. But life isn't an even playing field and so currently being a stay at home mum is none of the above and managing my boys through this whole process and I include my husband in that, well it can be the most challenging of jobs I have ever had!
Wednesday, 17 October 2012
Saturday, 13 October 2012
Friday, 12 October 2012
Oct 12th immunotherapy day 5!
Well, Harry has completed his 5 immunotherapy infusions for this set! One step closer to our freedom from LGI! Harry has been fantastic as always. He just accepts the need to stay in hospital for a few days. Yes, today he has been a bit more demanding and needs reminding of his manners at times, oh and he is becoming fantastic at delegating tasks, a good and bad skill! Good if you are a team player and you are clearly just doing other tasks, but bad if delegating all tasks whilst you put your feet up, or is that just clever? Perhaps, but in the long run the latter type of delegator will be resented! Anyhow, Harry is a team player, he's always doing a task, whilst delegating other tasks out, he's usually doing the creative task such as drawing though, whilst his helper has the task of cutting out! Today, Harry wanted paper chains made in abundance for a party for his cuddly toy dog, Becky! He's got the play workers in the spirit by asking for party bags, goodies to go in them, balloons and cake! Voila, we are now suitably decorated and ready for a party, perhaps a post immunotherapy party!
Harry deserves it as again he has been through the mill. He's faired reasonable apparently! One kid ended up in intensive care last year on this treatment! How Harry has reacted this time should give us a fare idea how he will react to future courses. The first one so they say is the worst, so fingers crossed. Though other side effects can creep in by the third session, such as poor eyesight, though these effects should be temporary. Harry remains on morphine tonight as he has had to have several presses of his morphine to give him a boost to counteract the pain. It suddenly comes on and is severe arthritic type pain, he has pain in his joints, as well as high temperatures, flu like symptoms, water retention, he put on 2 kilos in under 24 hours and not forgetting diahrroea. These side effects wear off a lot in the morning, then build up again come the afternoon with the next immunotherapy infusion!
The immunotherapy infusion is transfusing antibodies into Harry. These antibodies are foreign cells. Harry's existing cells do not like these, so his body is fighting them and putting up a resistance. So why does he need these foreign cells? Well they attract and eat any cancerous cells still left, or dare rear their ugly head. The antibodies then neatly dispose of the cancerous cells, hopefully meaning none are able to attach to each other ever again and form another tumour!
So we pray very hard, that this leg of the journey proves worthwhile!
So once out of here, not sure of discharge day yet, but we will have to have fun, so Harry has lots of good things to remember before Nov 5 th, not only Callum's birthday, but Harry's next date with his immunotherapy.
So this week at points has been a tale of 2 lives! On Wednesday, Ian Harding had arranged another gig at Tiger Tiger in Leeds to raise money for the oncology ward. So some toys can be bought. Harry has his eye on More playmobil as the ward has a limited amount and some of that is broken! Anyhow, as always I create a military operation to get us there! Originally Harry should have been at home, but this treatment was delayed by 2 weeks, due to the problems Harry had back in September. So, the military operation! Paul's parents were draughted in to look after Callum and my parents came to sit with Harry at LGI! This was so Paul and I could relax a little and enjoy tea, which we hada lovely meal at 'the Thai Cottage' followed by pre gig drinks at Tiger Tiger! The senators, the headline band, commenced their set at 9.30 and it was straight away fabulous music and I adorned my dancing shoes! However, not to leave my parents and Harry too late I had to steal myself away from the rocking music at 10.15 and head back to the LGI. So in the space if 20 mins I turn from rock chick (well I thought so, but in reality probably a dancing baboon, but it was fun) to nurse Sarah, helping Harry urinate into a cardboard bottle and assist him press his morphine button to help ease the pain!
Harry went onto have an unsettled night, just glad I hadn't over done the beer, as tempting with half price drinks pre 9pm, as negotiating unplugging Harry's 3 machines; helping him out of bed; disconnecting his saturation level monitor from his toe; pushing his trolley stand, not tripping on his wigglies; negotiating a cardboard bed pan into the toilet (so his output can be monitored) plus not forgetting actually helping Harry the few paces to the toilet, well you can't underestimate the mission!
It was a good night and the oncology ward will be very grateful for the funds too!
So, on the subject of military operations and 2 lives, Friday I had organised tickets to take Callum to see The Mousical at The Alhambra in Bradford. My friend's little girl Rosie was in it. It was also an excuse to give Callum his first theatre experience! Granny and grandad wanted to come too, thankfully as they were able to pick Callum up from nursery after lunch, whilst I made my way from LGI to Bradford. Harry does not like being on his own, so I had organised Grandma and Grandad to
come. Jo a volunteer should also have visited, but alas she had come down with a cold, so I had already asked Janie to visit later in the afternoon, but fortunately she could visit a little earlier! So with the knowledge Harry was having lots of entertainment, I could concentrate on having a lovely couple of hours with Callum. He seemed a little dum struck by the experience at times and found the hinged chair hilarious, when he realised it sprang up, when he stood up! However, he was still and it seemed to be a hit! Rosie was fantastic a credit to the world of ballet and her mummy and daddy! So perhaps a pantomime this year will feature in our forthcoming festivities!
So, which day Harry will be home I am not sure, I would think another 24 hours, so they can observe his come down off morphine and immunotherapy, but one can never be sure! Sometimes it depends how urgently the bed is needed!
Though as always Harry has been a great patient, so knowledgeable and in control of his treatment! When the morphine shots were not hitting the spot this evening, he asked me to summon the nurse, he overhead our discussion re his morphine and agreed in between his cries of pain that the overal rate should go up!
I was reading an article on Famikystuff4u a website my friend is working on, about hobbies and experiences we present our children with. Well cancer was obviously never on our agenda for experiences for Harry, but we have endeavoured to latch into Harry's strengths and enhance the skills we can. Whilst outdoor play has been limited and playing football not an option, we have helped Harry enhance his creative spirit, his mechanical mind, his thirst for knowledge, through crafty things, Lego and often looking things up on the Internet! We have never underestimated, Harry's ability to understand what is wrong with him. He knows he has had cancer and had a large lump removed. We feel it has been important that he is a key player with his team of professionals working with him. We explain things in a way Harry can understand and by involving him in as much as possible, means he has some control in a situation where at times there seems to be none! I would never want Harry to just think he has been poorly as, poorly means many things. The amount of hospital visits that Harry has had does not accompany just being poorly! Not many children thankfully get cancer or other diseases warranting such intensive treatment, so for us it has been right to inform Harry of what his treatment plan is. I also think its right that our McMillan nurse gave an assembly to the school and talked of Harry's cancer in simple terms for the children to understand. Harry has missed school this week, he will probably not get there much next week either, whilst his body recovers. I wouldn't want the other children to think being 'poorly' means you could end up having lots of time in hospital. Everyone is different in what they want their children to understand, but cancer is in no way just being 'poorly'. I guess once this is all over and Harry will just be poorly with a temperature on occasions, he needs to be able to make a distinction between what is 'poorly' and warrants a day off school and what is more serious!
Harry deserves it as again he has been through the mill. He's faired reasonable apparently! One kid ended up in intensive care last year on this treatment! How Harry has reacted this time should give us a fare idea how he will react to future courses. The first one so they say is the worst, so fingers crossed. Though other side effects can creep in by the third session, such as poor eyesight, though these effects should be temporary. Harry remains on morphine tonight as he has had to have several presses of his morphine to give him a boost to counteract the pain. It suddenly comes on and is severe arthritic type pain, he has pain in his joints, as well as high temperatures, flu like symptoms, water retention, he put on 2 kilos in under 24 hours and not forgetting diahrroea. These side effects wear off a lot in the morning, then build up again come the afternoon with the next immunotherapy infusion!
The immunotherapy infusion is transfusing antibodies into Harry. These antibodies are foreign cells. Harry's existing cells do not like these, so his body is fighting them and putting up a resistance. So why does he need these foreign cells? Well they attract and eat any cancerous cells still left, or dare rear their ugly head. The antibodies then neatly dispose of the cancerous cells, hopefully meaning none are able to attach to each other ever again and form another tumour!
So we pray very hard, that this leg of the journey proves worthwhile!
So once out of here, not sure of discharge day yet, but we will have to have fun, so Harry has lots of good things to remember before Nov 5 th, not only Callum's birthday, but Harry's next date with his immunotherapy.
So this week at points has been a tale of 2 lives! On Wednesday, Ian Harding had arranged another gig at Tiger Tiger in Leeds to raise money for the oncology ward. So some toys can be bought. Harry has his eye on More playmobil as the ward has a limited amount and some of that is broken! Anyhow, as always I create a military operation to get us there! Originally Harry should have been at home, but this treatment was delayed by 2 weeks, due to the problems Harry had back in September. So, the military operation! Paul's parents were draughted in to look after Callum and my parents came to sit with Harry at LGI! This was so Paul and I could relax a little and enjoy tea, which we hada lovely meal at 'the Thai Cottage' followed by pre gig drinks at Tiger Tiger! The senators, the headline band, commenced their set at 9.30 and it was straight away fabulous music and I adorned my dancing shoes! However, not to leave my parents and Harry too late I had to steal myself away from the rocking music at 10.15 and head back to the LGI. So in the space if 20 mins I turn from rock chick (well I thought so, but in reality probably a dancing baboon, but it was fun) to nurse Sarah, helping Harry urinate into a cardboard bottle and assist him press his morphine button to help ease the pain!
Harry went onto have an unsettled night, just glad I hadn't over done the beer, as tempting with half price drinks pre 9pm, as negotiating unplugging Harry's 3 machines; helping him out of bed; disconnecting his saturation level monitor from his toe; pushing his trolley stand, not tripping on his wigglies; negotiating a cardboard bed pan into the toilet (so his output can be monitored) plus not forgetting actually helping Harry the few paces to the toilet, well you can't underestimate the mission!
It was a good night and the oncology ward will be very grateful for the funds too!
So, on the subject of military operations and 2 lives, Friday I had organised tickets to take Callum to see The Mousical at The Alhambra in Bradford. My friend's little girl Rosie was in it. It was also an excuse to give Callum his first theatre experience! Granny and grandad wanted to come too, thankfully as they were able to pick Callum up from nursery after lunch, whilst I made my way from LGI to Bradford. Harry does not like being on his own, so I had organised Grandma and Grandad to
come. Jo a volunteer should also have visited, but alas she had come down with a cold, so I had already asked Janie to visit later in the afternoon, but fortunately she could visit a little earlier! So with the knowledge Harry was having lots of entertainment, I could concentrate on having a lovely couple of hours with Callum. He seemed a little dum struck by the experience at times and found the hinged chair hilarious, when he realised it sprang up, when he stood up! However, he was still and it seemed to be a hit! Rosie was fantastic a credit to the world of ballet and her mummy and daddy! So perhaps a pantomime this year will feature in our forthcoming festivities!
So, which day Harry will be home I am not sure, I would think another 24 hours, so they can observe his come down off morphine and immunotherapy, but one can never be sure! Sometimes it depends how urgently the bed is needed!
Though as always Harry has been a great patient, so knowledgeable and in control of his treatment! When the morphine shots were not hitting the spot this evening, he asked me to summon the nurse, he overhead our discussion re his morphine and agreed in between his cries of pain that the overal rate should go up!
I was reading an article on Famikystuff4u a website my friend is working on, about hobbies and experiences we present our children with. Well cancer was obviously never on our agenda for experiences for Harry, but we have endeavoured to latch into Harry's strengths and enhance the skills we can. Whilst outdoor play has been limited and playing football not an option, we have helped Harry enhance his creative spirit, his mechanical mind, his thirst for knowledge, through crafty things, Lego and often looking things up on the Internet! We have never underestimated, Harry's ability to understand what is wrong with him. He knows he has had cancer and had a large lump removed. We feel it has been important that he is a key player with his team of professionals working with him. We explain things in a way Harry can understand and by involving him in as much as possible, means he has some control in a situation where at times there seems to be none! I would never want Harry to just think he has been poorly as, poorly means many things. The amount of hospital visits that Harry has had does not accompany just being poorly! Not many children thankfully get cancer or other diseases warranting such intensive treatment, so for us it has been right to inform Harry of what his treatment plan is. I also think its right that our McMillan nurse gave an assembly to the school and talked of Harry's cancer in simple terms for the children to understand. Harry has missed school this week, he will probably not get there much next week either, whilst his body recovers. I wouldn't want the other children to think being 'poorly' means you could end up having lots of time in hospital. Everyone is different in what they want their children to understand, but cancer is in no way just being 'poorly'. I guess once this is all over and Harry will just be poorly with a temperature on occasions, he needs to be able to make a distinction between what is 'poorly' and warrants a day off school and what is more serious!
Monday, 8 October 2012
October 8 th 2012 Immunotherapy day 1.
Can't believe it's been 2 weeks since my last blog! Seems only yesterday that Harry was last in hospital. We were on the luxurious teenage ward. Now on our usual ward and in isolation again due to Harry's snotty nose! Apparrently the teenage cancer trust which is a national charity helped fund the teenage unit when being designed and refurbished. Whereas the under 13's don't have access to this funding, they have candlelighters, but as they are a regional charity, their funds just are not in the same league! You also realise just how much the NHS is subsidised! Which is why gift aid is so important! Why shouldn't the government forfit this money when it is lightening their overall spend at the end of the day? Where would the government be without charitable services! I do have to remind myself though that although the teenage ward is at the top if the league, ward 31 is still way above the standard of 41! Though the teenage ward has only 8 beds, ward 31, which is under 13s has 16 beds and ward 41 about 40 beds!
So back onto Harry! Being isolated is prob not a bad thing due to the level of pain Harry has been in the last 3 hours. He thought his head was going to explode! A side effect of this immunotherapy treatment. He started the immunotherapy around 3 pm and at the same time started on a morphine infusion. Pain anywhere in the body is expected. Harry's pain started around 6pm and got steadily worse. His morphine infusion level was increased around 8.30 pm and Harry has finally fallen asleep, it's 10pm. As he is on morphine his blood pressure has to be regularly checked as does his temperature, so he'll be disturbed on the hour for his observations. I think it's going to be a long night! He has this immunotherapy, which is infused through his port over 8 hours, each day for 5 days. So we hope to be home for Saturday. He has 6 sessions of this course of treatment. This means every 4 th week till march Harry will have this immunotherapy. We chose to put harry in for this treatment as part of a trial. Research shows that it has added value to aid ultimate survival! We know we are doing the right thing putting harry through this trial, to aid him having a longer, brighter, future, but at the same time it is very hard knowing that Harry was on top form only hours earlier, charging down the corridors of ward 31 pretending to be a racing car, to screaming out in pain! It's heart wrenching! we have been dreading this week. Though trying not to think about it too much, in fact what we have concentrated on is creating normality, getting Harry to school and good times!
In fact Harry has been amazing form these last 2 weeks. He's had a snotty nose and when Harry gets a a cold, being immune suppressed it's hard to shift. But this hasn't stopped him! Last Sunday, he had his long awaited pirate party! I felt the pressure to give him the best time! In fact organising the ball was easier!!
Harry wore his red and white striped shorts, red t shirt with captain Harry on it, a thick black belt with a gold buckle, a pirate hat and he had his parrot for company, that we made out of a urine bottle when he was going through radiotherapy! Harry was as giddy as a kipper prior to his party! We had arts and crafts to start with. Little wooden treasure chests to decorate, little wooden pirate magnets to colour in and pirate hats! Then, there was food and birthday cake. Becky Lister made a fab pirate ship cake! After food, the children played pass the parcel, which I left Marie in charge of, whilst Paul and I reset up the assault course. Though I believe I had the easy job, as pass the parcel proved a little
controversial and Marie put her peace keeping skills to excellent use, meaning all the children finished the game smiling and sucking the lollies they won! So came the assault course, I always under estimate the planning for children's parties and the time management needed, as well as the excellent control needed to ensure the smooth running of such events! Luckily, Harry has a voice loud enough to get everyone's attention and he managed to get all the kids to line up behind him and watch him give the demonstration as to how to successfully complete the course! Having got all the children safely through this, there was one final element, the piniata! A paper mâché donkey with 24 ribbons attached to a door that opens. The donkey gets stuffed with sweets (i also added glow sticks - thank you wilkinsons for being cheap and cheerful!) only one ribbon can open the door and let's the treasures tumble to the ground. That's the theory, but the glow sticks prevented everything tumbling to the ground, thus a quick intervention by mum and then I could shake the treasure over an eager awaiting audience ready to gather what they can into their party bags! Phew! Party over, job done for another year. But most of all Happy Harry! He loved every minute and was on amazing form! I thought the excitement would have meant Harry woyld have slept soundly on tbe Sunday night, however this was not the case. He woke 5 times! Was in a foul mood on Monday. So the best thing was to take Harry to LGI and get his bloods checked. He needed a platelet transfusion. Having had this he slept soundly on Monday night! Yay!
So this week has been about harry getting to school. We await the school being actually signed off giving Harry his medicines, until the he can't stay all day! I am trying to get this organised ASAP so when Harry is well he can go to school as much as possible. It is his right to do so. He needs to feel like his peers, as all these past months he has not been able to do the things they do and take for granted. So no I don't apologise for being a pushy mother, if I didn't fight for Harry, he wouldn't be here! It's my fight that got him diagnosed in the first place! It's also my fight that has pushed for Harry to be assessed for continuing care funding, which I was told Harry wouldn't score high enough to get it and that Leeds didn't fund for arguments made out of the support tool criteria. Well my pushing, my believing Harry had significantly complex and unstable needs, as well as some great reports written by some of the professionals involved with Harry has led him to gain 10 hours nursing
intervention on a weekly basis! With this input, I can have proper respite, as we can leave Harry with the nurse and go out and well actually do something. We have another 2 workers providing Harry with a few hours a week too. Having fought for services for months, we finally get a few, it's like waiting for a bus, they all come at once! Though, my priority whilst Harry is well is to get him to school. Though, these services are gratefully accepted as we await to see how his latest treatment affects Harry. We still have a few months of treatment to go!
So the ultimate part of the week was Harry going to Silverstone with daddy, Adam and Adam's daddy, Tom! They watchec touring cars race! Daddy took the weekend off work to give Harry an amazing day before this god awful immunotherapy! Harry has missed out on so many planned activities, that this was a massive thing! The first really grown up activity he has done! He was soooo excited when we woke him up at 6.15 am, he was dancing around the kitchen. he remained in good spirits all day and came home about 7.45 pm still full of it and tales to tell me! I stayed at home with Callum and enjoyed a day with him. We also spent the day with Adam's sister Sophie and her mummy Claire! Callum went swimming with Sophie and each of them loved being in the water! So a successful day all round. In fact seeing Harry so animated and alive just made my heart swell and choked me up! Only a month ago he was having high temperatures and we couldn't see him enjoying another day! Yesterday was a million miles from a month ago. It makes us feel like our old selves
seeing Harry so alive, we can breath easily and enjoy ourselves too. Creating fantastic memories is what life is all about! Those memories that make you smile for years to come are invaluable! Live, Laugh, Love! Without these life is meaningless!
When Harry is well, we intend to do all 3 to the maximum. Let's get this week out of the way and get back onto the fun train again! We all very much deserve it!
So back onto Harry! Being isolated is prob not a bad thing due to the level of pain Harry has been in the last 3 hours. He thought his head was going to explode! A side effect of this immunotherapy treatment. He started the immunotherapy around 3 pm and at the same time started on a morphine infusion. Pain anywhere in the body is expected. Harry's pain started around 6pm and got steadily worse. His morphine infusion level was increased around 8.30 pm and Harry has finally fallen asleep, it's 10pm. As he is on morphine his blood pressure has to be regularly checked as does his temperature, so he'll be disturbed on the hour for his observations. I think it's going to be a long night! He has this immunotherapy, which is infused through his port over 8 hours, each day for 5 days. So we hope to be home for Saturday. He has 6 sessions of this course of treatment. This means every 4 th week till march Harry will have this immunotherapy. We chose to put harry in for this treatment as part of a trial. Research shows that it has added value to aid ultimate survival! We know we are doing the right thing putting harry through this trial, to aid him having a longer, brighter, future, but at the same time it is very hard knowing that Harry was on top form only hours earlier, charging down the corridors of ward 31 pretending to be a racing car, to screaming out in pain! It's heart wrenching! we have been dreading this week. Though trying not to think about it too much, in fact what we have concentrated on is creating normality, getting Harry to school and good times!
In fact Harry has been amazing form these last 2 weeks. He's had a snotty nose and when Harry gets a a cold, being immune suppressed it's hard to shift. But this hasn't stopped him! Last Sunday, he had his long awaited pirate party! I felt the pressure to give him the best time! In fact organising the ball was easier!!
Harry wore his red and white striped shorts, red t shirt with captain Harry on it, a thick black belt with a gold buckle, a pirate hat and he had his parrot for company, that we made out of a urine bottle when he was going through radiotherapy! Harry was as giddy as a kipper prior to his party! We had arts and crafts to start with. Little wooden treasure chests to decorate, little wooden pirate magnets to colour in and pirate hats! Then, there was food and birthday cake. Becky Lister made a fab pirate ship cake! After food, the children played pass the parcel, which I left Marie in charge of, whilst Paul and I reset up the assault course. Though I believe I had the easy job, as pass the parcel proved a little
controversial and Marie put her peace keeping skills to excellent use, meaning all the children finished the game smiling and sucking the lollies they won! So came the assault course, I always under estimate the planning for children's parties and the time management needed, as well as the excellent control needed to ensure the smooth running of such events! Luckily, Harry has a voice loud enough to get everyone's attention and he managed to get all the kids to line up behind him and watch him give the demonstration as to how to successfully complete the course! Having got all the children safely through this, there was one final element, the piniata! A paper mâché donkey with 24 ribbons attached to a door that opens. The donkey gets stuffed with sweets (i also added glow sticks - thank you wilkinsons for being cheap and cheerful!) only one ribbon can open the door and let's the treasures tumble to the ground. That's the theory, but the glow sticks prevented everything tumbling to the ground, thus a quick intervention by mum and then I could shake the treasure over an eager awaiting audience ready to gather what they can into their party bags! Phew! Party over, job done for another year. But most of all Happy Harry! He loved every minute and was on amazing form! I thought the excitement would have meant Harry woyld have slept soundly on tbe Sunday night, however this was not the case. He woke 5 times! Was in a foul mood on Monday. So the best thing was to take Harry to LGI and get his bloods checked. He needed a platelet transfusion. Having had this he slept soundly on Monday night! Yay!
So this week has been about harry getting to school. We await the school being actually signed off giving Harry his medicines, until the he can't stay all day! I am trying to get this organised ASAP so when Harry is well he can go to school as much as possible. It is his right to do so. He needs to feel like his peers, as all these past months he has not been able to do the things they do and take for granted. So no I don't apologise for being a pushy mother, if I didn't fight for Harry, he wouldn't be here! It's my fight that got him diagnosed in the first place! It's also my fight that has pushed for Harry to be assessed for continuing care funding, which I was told Harry wouldn't score high enough to get it and that Leeds didn't fund for arguments made out of the support tool criteria. Well my pushing, my believing Harry had significantly complex and unstable needs, as well as some great reports written by some of the professionals involved with Harry has led him to gain 10 hours nursing
intervention on a weekly basis! With this input, I can have proper respite, as we can leave Harry with the nurse and go out and well actually do something. We have another 2 workers providing Harry with a few hours a week too. Having fought for services for months, we finally get a few, it's like waiting for a bus, they all come at once! Though, my priority whilst Harry is well is to get him to school. Though, these services are gratefully accepted as we await to see how his latest treatment affects Harry. We still have a few months of treatment to go!
So the ultimate part of the week was Harry going to Silverstone with daddy, Adam and Adam's daddy, Tom! They watchec touring cars race! Daddy took the weekend off work to give Harry an amazing day before this god awful immunotherapy! Harry has missed out on so many planned activities, that this was a massive thing! The first really grown up activity he has done! He was soooo excited when we woke him up at 6.15 am, he was dancing around the kitchen. he remained in good spirits all day and came home about 7.45 pm still full of it and tales to tell me! I stayed at home with Callum and enjoyed a day with him. We also spent the day with Adam's sister Sophie and her mummy Claire! Callum went swimming with Sophie and each of them loved being in the water! So a successful day all round. In fact seeing Harry so animated and alive just made my heart swell and choked me up! Only a month ago he was having high temperatures and we couldn't see him enjoying another day! Yesterday was a million miles from a month ago. It makes us feel like our old selves
seeing Harry so alive, we can breath easily and enjoy ourselves too. Creating fantastic memories is what life is all about! Those memories that make you smile for years to come are invaluable! Live, Laugh, Love! Without these life is meaningless!
When Harry is well, we intend to do all 3 to the maximum. Let's get this week out of the way and get back onto the fun train again! We all very much deserve it!
Tuesday, 25 September 2012
Monday 24 th sept! A little normality!
Well no blog writing means that we are all good and trying to adapt to normality away from hospital! Harry came home Sat 15 th Sept. I can't believe 2 weeks ago we were awaiting the outcome of the ward meeting as to how to move forward with Harry and get him home! The speed at which life moves is phenomenal at times. The decline of Harry and the state he was in at the beginning of September was hard to witness and get our heads around. 2 1/2 weeks in hospital and Harry seems better than he has been in months! Well since before his operation in April! Harry's dramatic changes in well being can be hard for mum and dad to get their heads around at times! We felt despair very much at times when Harry was really poorly and it seemed the light was no where to be seen at the end if the tunnel, like a bad dream where you are walking through a tunnel abd someone keeps making the tunnel longer and the opening further away and unacheivable. It is scary and you want to scream make it ok, but no one is listening, however you eventually wake up and life
moves on and the tunnel length is as it should be and thd light is in sight and attainable again!
So we reached the light and upon finding it and having Harry home we breath a sigh of relief! With being at home and reunited after 2 1/2 weeks of being apart, plus the 3 weeks prior to hospital being a chaotic nightmare, well we try and regain some normality to our lives. However, it is not easy for us all to just switch from the mentality of trying to support a poorly Harry at home and then in hospital to being back at home and well, being a family again. Harry has undivided attention from one of us in hospital and Callum has a lot of attention when home too, but is looked after by a handful of people including nursery staff as well. He just constantly asks where he is going and who is picking him up. So to be home as a family is fantastic, but we have to take a few days to adjust again! At first I was on a high that Harry was home, but after a few days I started to reflect on the enormity of the last few weeks and I have to come to terms in my head with the turn around in Harry. A few weeks ago we thought he was slipping through our fingers and this is not the first time we have thought that in the last year, but to go from dealing with the emotions that come with those thoughts to having gregarious, inquisitive Harry back, just takes us time to adjust to. I think it takes longer to recover from each knock you have and currently neither Paul or I feel that sociable. However, if we can keep Harry on an even keel for a bit, then we will be up for going out again and socialising, so folk out there don't take offence if we don't want to go out, we are just adjusting to being at home and enjoying being at home! We are enjoying the mundane activities such as bathing the boys together at bedtime, hearing either the fits of giggles that comes with splashing each other or the cries, because the water has gone in their eyes, but both sounds mean I have my boys under one roof and the boys are back in town!
So Harry's first full day back at home was spent on a baking mission! Harry got lots of new cooking equipment from Janey, which he was keen to use, Callum was Harry's assistant! Then Monday we had a family day out. We had won a chair on eBay, which was to collect from Gateshead, so we went up there first, then to Saltburn, where we had a pub lunch and then went on the beach to get some fresh air. Running on the beach with my boys felt like landing on the moon! A far cry from the stuffy hospital room! We then went and met Jenny and Baby Torin aged 1 month, on the way home. So a funpacked, fun filled day, making the most of a day as a family, because we never know when hospital looms for Harry!
The huge Milestone this week has been Harry starting school! Tuesday I wasn't sure whether to send him because he was still neutropenic, which means his immunity levels are low, but after a discussion with our McMillan nurse when Harry was in clinic, it seemed the best idea to grasp the moment whilst Harry is well and send him! So I spoke to school about sending Harry on the Wednesday and we agreed that I would go with him and he would just stay an hour. He loved it! On the Thursday he stayed 2.5 hours with me, though I spent muchof the time in discussion with Michelle from the homeschooling team and talking to the head. Harry didn't seem to mind that I wasn't really with him, so on Friday I left him for an hour on his own! Harry loves getting dressed in his uniform and Friday afternoon when at clinic at LGI Harry was keen to show everyone on ward 31 his uniform whilst awaiting his blood results. He raced downstairs as soon as he could and darted onto the ward saying
'Ta Da', he was a different child to only 2 weeks earlier! Everyone was suitable impressed to see him!
I never really appreciated the significance of Harry wearing a school uniform, but it has given Harry a new status. He's been yearning to start school since last September when some of his friends who are July/August babies started. Now he goes to school he feels he has the same grown up status! He is so proud! When it came to the weekend he was like, I get 2 days off from school! Hope the novelty lasts forever! He had a good weekend, though some of the side effects of his new drugs are starting to kick in, such as cramps in his legs when he's been sat a while and dry skin, which has occurred on his face. His Haemoglobin was borderline anaemic levels Friday and this was apparent at times, particularly as it seems to make Harry more restless on a night. However, he went to school Monday and I left him for 2 hours. When I went to collect him, the children were having playtime inside after lunch. I couldn't spot Harry at first, but when I did I wish I could bottle that moment, as it was lovely
to see a happy , Harry playing with the other children, making a puzzle! Callum saw Harry's classroom too and Harry relished in showing his little brother around. Callum now wants to go to school too!
Harry going to school does mean I have a whole new system to deal with though, trying to explain Harry's situation to new people and getting them on board with Harry's treatment plan. The Mcmillan nurse has been fab in liaising with the school as has the home schooling team, though time will give the school confidence in managing Harry. I do feel like an administrator for Harry's services at present and spent a chunk of last week speaking to various services to get more support. This is great, but I'm not sure if the services are really what we want, but we have to try them first. So Harry is entitled to about 4 hours in put from a registered nurse each week, this is care in our home and someone I can actually leave Harry with, we are meeting a new volunteer next week from the sitting service, who can provide 3 hours a week in the home and again someone I can leave Harry with. We have also been linked to a CLIC Sargent volunteer who can play with Harry again at home, but I have to be there. These services may be useful, but most of all I want extra support to enable Harry to attend school for longer, not more services within our home whereby Harry spends so much time when poorly. However, if Harry is poorly, the nursing team will be appreciated. I also have to co ordinate with the home schooling team, so they can work with Harry when he is not well enough to attend school much. I am grateful after all these months to be getting some input, but at present, I just seem to be chief co ordinator. Once we have tried the services, only then can I assess their usefulness!
So having had a great room in the teenage ward last night, per Harry's operation, but rubbish Internet access, I didn't finish this blog, so can update you that Harry successfully had his port put back in today! We went up to theatre for about 9.50, but as some notes were missing, we waited there for 20 mins before they arrives. My inquisitive Harry though, took the opportunity to learn what all the machines and wires do, well why waste an opportunity!
He was in theatre for 2 hours. He came round, sore and was puffy faced, how he looked after his operation in April! He soon recovered and was joking with mummy and daddy in his room, in fact he
even had the energy to have a lesson with Michelle from the home schooling service! So topped up with platelets and red blood we got him home for 8pm! Go Harry! We all love you!
moves on and the tunnel length is as it should be and thd light is in sight and attainable again!
So we reached the light and upon finding it and having Harry home we breath a sigh of relief! With being at home and reunited after 2 1/2 weeks of being apart, plus the 3 weeks prior to hospital being a chaotic nightmare, well we try and regain some normality to our lives. However, it is not easy for us all to just switch from the mentality of trying to support a poorly Harry at home and then in hospital to being back at home and well, being a family again. Harry has undivided attention from one of us in hospital and Callum has a lot of attention when home too, but is looked after by a handful of people including nursery staff as well. He just constantly asks where he is going and who is picking him up. So to be home as a family is fantastic, but we have to take a few days to adjust again! At first I was on a high that Harry was home, but after a few days I started to reflect on the enormity of the last few weeks and I have to come to terms in my head with the turn around in Harry. A few weeks ago we thought he was slipping through our fingers and this is not the first time we have thought that in the last year, but to go from dealing with the emotions that come with those thoughts to having gregarious, inquisitive Harry back, just takes us time to adjust to. I think it takes longer to recover from each knock you have and currently neither Paul or I feel that sociable. However, if we can keep Harry on an even keel for a bit, then we will be up for going out again and socialising, so folk out there don't take offence if we don't want to go out, we are just adjusting to being at home and enjoying being at home! We are enjoying the mundane activities such as bathing the boys together at bedtime, hearing either the fits of giggles that comes with splashing each other or the cries, because the water has gone in their eyes, but both sounds mean I have my boys under one roof and the boys are back in town!
So Harry's first full day back at home was spent on a baking mission! Harry got lots of new cooking equipment from Janey, which he was keen to use, Callum was Harry's assistant! Then Monday we had a family day out. We had won a chair on eBay, which was to collect from Gateshead, so we went up there first, then to Saltburn, where we had a pub lunch and then went on the beach to get some fresh air. Running on the beach with my boys felt like landing on the moon! A far cry from the stuffy hospital room! We then went and met Jenny and Baby Torin aged 1 month, on the way home. So a funpacked, fun filled day, making the most of a day as a family, because we never know when hospital looms for Harry!
The huge Milestone this week has been Harry starting school! Tuesday I wasn't sure whether to send him because he was still neutropenic, which means his immunity levels are low, but after a discussion with our McMillan nurse when Harry was in clinic, it seemed the best idea to grasp the moment whilst Harry is well and send him! So I spoke to school about sending Harry on the Wednesday and we agreed that I would go with him and he would just stay an hour. He loved it! On the Thursday he stayed 2.5 hours with me, though I spent muchof the time in discussion with Michelle from the homeschooling team and talking to the head. Harry didn't seem to mind that I wasn't really with him, so on Friday I left him for an hour on his own! Harry loves getting dressed in his uniform and Friday afternoon when at clinic at LGI Harry was keen to show everyone on ward 31 his uniform whilst awaiting his blood results. He raced downstairs as soon as he could and darted onto the ward saying
'Ta Da', he was a different child to only 2 weeks earlier! Everyone was suitable impressed to see him!
I never really appreciated the significance of Harry wearing a school uniform, but it has given Harry a new status. He's been yearning to start school since last September when some of his friends who are July/August babies started. Now he goes to school he feels he has the same grown up status! He is so proud! When it came to the weekend he was like, I get 2 days off from school! Hope the novelty lasts forever! He had a good weekend, though some of the side effects of his new drugs are starting to kick in, such as cramps in his legs when he's been sat a while and dry skin, which has occurred on his face. His Haemoglobin was borderline anaemic levels Friday and this was apparent at times, particularly as it seems to make Harry more restless on a night. However, he went to school Monday and I left him for 2 hours. When I went to collect him, the children were having playtime inside after lunch. I couldn't spot Harry at first, but when I did I wish I could bottle that moment, as it was lovely
to see a happy , Harry playing with the other children, making a puzzle! Callum saw Harry's classroom too and Harry relished in showing his little brother around. Callum now wants to go to school too!
Harry going to school does mean I have a whole new system to deal with though, trying to explain Harry's situation to new people and getting them on board with Harry's treatment plan. The Mcmillan nurse has been fab in liaising with the school as has the home schooling team, though time will give the school confidence in managing Harry. I do feel like an administrator for Harry's services at present and spent a chunk of last week speaking to various services to get more support. This is great, but I'm not sure if the services are really what we want, but we have to try them first. So Harry is entitled to about 4 hours in put from a registered nurse each week, this is care in our home and someone I can actually leave Harry with, we are meeting a new volunteer next week from the sitting service, who can provide 3 hours a week in the home and again someone I can leave Harry with. We have also been linked to a CLIC Sargent volunteer who can play with Harry again at home, but I have to be there. These services may be useful, but most of all I want extra support to enable Harry to attend school for longer, not more services within our home whereby Harry spends so much time when poorly. However, if Harry is poorly, the nursing team will be appreciated. I also have to co ordinate with the home schooling team, so they can work with Harry when he is not well enough to attend school much. I am grateful after all these months to be getting some input, but at present, I just seem to be chief co ordinator. Once we have tried the services, only then can I assess their usefulness!
So having had a great room in the teenage ward last night, per Harry's operation, but rubbish Internet access, I didn't finish this blog, so can update you that Harry successfully had his port put back in today! We went up to theatre for about 9.50, but as some notes were missing, we waited there for 20 mins before they arrives. My inquisitive Harry though, took the opportunity to learn what all the machines and wires do, well why waste an opportunity!
He was in theatre for 2 hours. He came round, sore and was puffy faced, how he looked after his operation in April! He soon recovered and was joking with mummy and daddy in his room, in fact he
even had the energy to have a lesson with Michelle from the home schooling service! So topped up with platelets and red blood we got him home for 8pm! Go Harry! We all love you!
Wednesday, 12 September 2012
12.9.12 hip hip hooray Harry is 5!
It's Harry's birthday! He's had a top day. The new antibiotic finally kicked in Sunday night exactly 48 hours after it commenced! Harry in the meantime had a weekend plagued by High temperatures. On Sunday he was on good form in between the temperatures, so was able to have some fun. Though the signal that his temperature had spiked was Harry saying I'm cold. Well in a room that has felt more like a greenhouse, with the sun blazing through the windows that don't open, cold it is not! Therefore each time he said he was cold we called the nurses and his temperature would go straight up to 40 degrees C!
My mum and dad sat with Harry whilst Paul and I took Callum on the Superhero walk. The sun was out and do the stroll around Leeds centre enabled the colourful crew to be noticed and with people sitting outside, collection boxes got some pennies! After the walk there was face painting and a ballon lady made animals and superhero weapons of mass destruction, which the boys loved and found dive bombing onto the floor incredible funny! This was Fin, James and Callum of course! James won a prize for fancy dress! As dad had dressed Callum I was just pleased he was, well erm... dressed Ha Ha! Callum has got a Superman T shirt, but he insisted on wearing this on Thursday, was then bathed by Granny, so I could have tea with Paul who was staying with Harry, then shoot off to a Candlelighters focus group on holidays! So the T - shirt is still at Granny's! The focus group was really good to be a part of as I got to have a say in how money raised by us and other's is spent! It is hoped that a centre parcs holiday destination can be negotiated at a reasonable rate to give families the possibility of a short break all year round and not just seasonal. I recently negotiated to have the option of changing our centre parcs break for a second time, which I think I am going to have to activate, as if Harry commences his new treatment next Monday, he'll be in hospital the week of 5 th November! Then it's when to book it to, probably well clear if the end of Harry's treatment. Having holidays arranged by Candlelighters takes the stress out if negotiating changed dates and worrying about losing money, at a time when money is precioud due to reduced incomes! The focus group also came up with some great ideas for other possibilities! It's always good to know where money is spent when you ask people to dig deep and support charities!
So Harry had his last temperature on Sunday evening and has really turned a corner thankfully. Discharge is in sight! We can smell it! Harry can see the outside world again, particularly as very rudely we have 3 big porta cabins right outside our window, obscuring the view all in aid of providing supportive technical equipment for 'one born every minute!' And who the hell watches that! Ha Ha! Though how they ever get people to agree to bare all at their most vulnerable I have no idea!
Back to Harry though! We held our breath and awaited the outcome of the big ward meeting that takes place every Monday afternoon. Harry was discussed in much detail we are told, as he has been quite complex! It has been complicated as Harry has had an infection in his line on top of the radiotherapy side effects, this can be problematic to solve long term and will require Harry having his line removed and replaced a few days later. However, the line cannot be removed whilst he is on intravenous feeds (TPN) as this cannot go straight into his vein via a cannula as it will cause too much irritation to him. Therefore to remove the line, the TPN needs to have stopped!
Therefore as said we have held our breath that Harry has remained temperature free for 3 days, has had virtually no tummy aches and so he can tolerate his NG feed being increased and the TPN being decreased! This has been managed successfully, phew, so far! He will come off his TPN thurs night and his NG feed will be up to a satisfactory level to be able to sustain Harry's nutrition. The plan is that he has his line out on Friday under an anaesthetic. If they don't take it out, experience shows that
children more often than not get more line infections and since this infection has taken 7 days to respond, that's vital time that may disrupt Harry's next 6 months of treatment! He will then be able to go home at the weekend, but will have to come back to have the line put back in again under anaesthetic! If I've lost you with the technicality then sorry, but you see what we have to get our heads around! It's complex to balance the infection problem against ensuring Harry has adequate nutrition! He has gained 2 kilos, so that's fantastic. Some will be just fluid, but the dietician confirmed that some of that is nutritional fat or muscle too, whatever, he's put on weight!
So Harry turns 5! What a fabulous birthday he has had too! He had a remote controlled landrover from the ward, a large one that looks like it'll do some good stunts! Callum was competing to get his hands on the controls too! He's had Lego and playmobil and books and he still
hasn't opened all of his presents! By being in hospital and having few distractions this morning he loved playing with his playmobil! He opened his presents gradually through out the day, which was lovely, as he took in what he got, well almost, it got full on in the afternoon when everybody else arrived - daddy, Callum, granny, grandad and Janey! Grandma and Grandad came late morning and stayed for cake, before heading off. It was too small a room for everyone to be there all day and too much for Harry. My mum had baked a dairy free cake and I decorated it with pirate Lego and pirate bits from the cake shop in Otley! Even Harry had some cake! There was about half the cake left after everyone had, had a piece and Callum asked whose piece the remaining half was. Someone joked that it was Callum's, but he wisely said that if he ate that much his tummy would be sick! Even Callum knows his limitations!
So we had pass the parcel (kindly made up by Jenny Winder!) to One Direction and Helen the
Playworker stopped and started the music, so it was all fare! The boys played happily together and got giddy, dancing and singing until Harry was worn out and needed a kip!
Harry has been in great spirits today. Long may it continue and hopefully he can pop into school next week to meet his new class mates ! He too can then get a picture on FB of him in his new uniform to join the set of babies from baby group that have just started school too! Harry is just realising that his friends have started school and he hasn't, so more importantly than photos is enabling Harry to feel apart of school, that he belongs and usn't being left behind his peers cos of cancer!
My mum and dad sat with Harry whilst Paul and I took Callum on the Superhero walk. The sun was out and do the stroll around Leeds centre enabled the colourful crew to be noticed and with people sitting outside, collection boxes got some pennies! After the walk there was face painting and a ballon lady made animals and superhero weapons of mass destruction, which the boys loved and found dive bombing onto the floor incredible funny! This was Fin, James and Callum of course! James won a prize for fancy dress! As dad had dressed Callum I was just pleased he was, well erm... dressed Ha Ha! Callum has got a Superman T shirt, but he insisted on wearing this on Thursday, was then bathed by Granny, so I could have tea with Paul who was staying with Harry, then shoot off to a Candlelighters focus group on holidays! So the T - shirt is still at Granny's! The focus group was really good to be a part of as I got to have a say in how money raised by us and other's is spent! It is hoped that a centre parcs holiday destination can be negotiated at a reasonable rate to give families the possibility of a short break all year round and not just seasonal. I recently negotiated to have the option of changing our centre parcs break for a second time, which I think I am going to have to activate, as if Harry commences his new treatment next Monday, he'll be in hospital the week of 5 th November! Then it's when to book it to, probably well clear if the end of Harry's treatment. Having holidays arranged by Candlelighters takes the stress out if negotiating changed dates and worrying about losing money, at a time when money is precioud due to reduced incomes! The focus group also came up with some great ideas for other possibilities! It's always good to know where money is spent when you ask people to dig deep and support charities!
So Harry had his last temperature on Sunday evening and has really turned a corner thankfully. Discharge is in sight! We can smell it! Harry can see the outside world again, particularly as very rudely we have 3 big porta cabins right outside our window, obscuring the view all in aid of providing supportive technical equipment for 'one born every minute!' And who the hell watches that! Ha Ha! Though how they ever get people to agree to bare all at their most vulnerable I have no idea!
Back to Harry though! We held our breath and awaited the outcome of the big ward meeting that takes place every Monday afternoon. Harry was discussed in much detail we are told, as he has been quite complex! It has been complicated as Harry has had an infection in his line on top of the radiotherapy side effects, this can be problematic to solve long term and will require Harry having his line removed and replaced a few days later. However, the line cannot be removed whilst he is on intravenous feeds (TPN) as this cannot go straight into his vein via a cannula as it will cause too much irritation to him. Therefore to remove the line, the TPN needs to have stopped!
Therefore as said we have held our breath that Harry has remained temperature free for 3 days, has had virtually no tummy aches and so he can tolerate his NG feed being increased and the TPN being decreased! This has been managed successfully, phew, so far! He will come off his TPN thurs night and his NG feed will be up to a satisfactory level to be able to sustain Harry's nutrition. The plan is that he has his line out on Friday under an anaesthetic. If they don't take it out, experience shows that
children more often than not get more line infections and since this infection has taken 7 days to respond, that's vital time that may disrupt Harry's next 6 months of treatment! He will then be able to go home at the weekend, but will have to come back to have the line put back in again under anaesthetic! If I've lost you with the technicality then sorry, but you see what we have to get our heads around! It's complex to balance the infection problem against ensuring Harry has adequate nutrition! He has gained 2 kilos, so that's fantastic. Some will be just fluid, but the dietician confirmed that some of that is nutritional fat or muscle too, whatever, he's put on weight!
So Harry turns 5! What a fabulous birthday he has had too! He had a remote controlled landrover from the ward, a large one that looks like it'll do some good stunts! Callum was competing to get his hands on the controls too! He's had Lego and playmobil and books and he still
hasn't opened all of his presents! By being in hospital and having few distractions this morning he loved playing with his playmobil! He opened his presents gradually through out the day, which was lovely, as he took in what he got, well almost, it got full on in the afternoon when everybody else arrived - daddy, Callum, granny, grandad and Janey! Grandma and Grandad came late morning and stayed for cake, before heading off. It was too small a room for everyone to be there all day and too much for Harry. My mum had baked a dairy free cake and I decorated it with pirate Lego and pirate bits from the cake shop in Otley! Even Harry had some cake! There was about half the cake left after everyone had, had a piece and Callum asked whose piece the remaining half was. Someone joked that it was Callum's, but he wisely said that if he ate that much his tummy would be sick! Even Callum knows his limitations!
So we had pass the parcel (kindly made up by Jenny Winder!) to One Direction and Helen the
Playworker stopped and started the music, so it was all fare! The boys played happily together and got giddy, dancing and singing until Harry was worn out and needed a kip!
Harry has been in great spirits today. Long may it continue and hopefully he can pop into school next week to meet his new class mates ! He too can then get a picture on FB of him in his new uniform to join the set of babies from baby group that have just started school too! Harry is just realising that his friends have started school and he hasn't, so more importantly than photos is enabling Harry to feel apart of school, that he belongs and usn't being left behind his peers cos of cancer!
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