Thursday, 30 August 2012

Thurs 30.8.12 finally Harry is on intravenous fluids and food!

Well as you could tell rock bottom was the state of play yesterday evening!
Harry was very lethargic and tearful this morning. We all went to Jimmy's for his radiotherapy review. It wasn't really a review though, as they immediately were concerned how poorly he was. I got him weighed there and he weighed 16.3 kilos! He's lost 3.3 kilos in 3 weeks. He was 17 kilos last week. My fear was he would lose more weight. We have tried so hard to get his feed down his NG tube, but the frequent tummy aches, nausea and actual vomiting prevented this much of the time! This morning the radiotherapy consultant spoke to clinic at LGI where we were heading for Harry's platelet transfusion, it was arranged that Harry would be reviewed by a doctor once he was there! On arrival at clinic it was heaving. So busy. It was lunch time. Callum wanted a buscuit and a drink. Daddy got these for Callum, whilst I had a groaning Harry on my lap. I'd forgotten thurs was the day many children fast for bone marrow aspirates and so you are not supposed to eat in the waiting area, but go to the canteen, until this women very curtly told us of this fact! Having been to Jimmy's already, not had a drink, stressed up to the eyeballs, not wanting to take Callum to the canteen as both parents wanted to speak to the pending visit from the doctor, I replied it was hard for everybody! Then Harry wanted some milk. I certainly couldn't take him off the ward, the kitchen is tiny and for pardnts only, if I took him in there then I would contravene another rule! Harry had, had a temperature that morning of 35.5, the radiotherapy consultant said this could still mean that he was brewing something and he was a bit snotty! I cart Harry down the ward at clinic to the nurses station and declared that I thought Harry had an infection and needed isolating. The support worker said they wouldn't necessarily isolate him and asked what type of infection. I said I didn't know and upon further interrogation I burst into tears with the stess if it all! However, we got a single room and all 4 of us could have drinks and food without offending anyone else! (even harry had a snippet of sandwich) Relief!

So I asked for the dietician to review Harry too, knowing she was away tomorrow and in fact a doctor and a dietician reviewed Harry together! Having discussed Harry, waited a few hours for them to discuss their findings with Sue our consultant, finally he's been admitted, put on intravenous fluid and he will move onto intravenous food tomorrow!
To top it all, (in a good way!) ward 31 had been reopened and has a mish mash of 3 wards on it, there are still beds on 41, but thankfully we have one in 31! A bay, not a side room, but 31. Yey! God is looking down on Harry and I now feel it will all be alright!
Harry was actually engaging in making a Lego fire engine with grandad this eve! Not felt like doing that in ages! His feed down his NG tube has been stopped for now to give his gut a rest. He has not committed today!
Harry has tickets to see a circus next Fri, maybe he'll make it. It's just round the corner from LGI, We can make this a goal! We have had to cancel
His birthday party, planned for Sunday is cancelled! We have not discussed his party this week and being so poorly lost concept of time scales, so it's not a big issue, but just another nice thing to be crossed out of the diary lately.
However, the aim is to get our vivacious Harry back! Hopefully we can reschedule his party for a couple of weeks time. If anyone deserves a great birthday and party Harry does! His next treatment scheduled for Monday has been delayed. It will likely start in a couple of weeks, we will see. Let's get Harry built back up again!
Thanks to everyone who has sent us such kind words and offers of help! We appreciate it!

Wednesday, 29 August 2012

29.8.12 more vomiting, diahrroea and tube repasses

So Harry's sickness returned and with it several visits to LGI. Harry had completed his radiotherapy and so I said to Harry, well this week we have a hospital free week, apart from maybe a platelet transfusion. How wrong I was and famous last words! Monday brought a trip to LGI as Harry vomited his NG tube out in the night. Whilst there Harry had his bloods tested as thought, might as well and so cancelled the community nursing team's visit on the Tuesday. Yep Harry did need a platelet transfusion, but we only knew this late Monday, so yep, back to LGI Tuesday am for more platelets. Well I kept telling Harry he had a nice afternoon ahead of him and we had arranged to see some friends. However, when we got to the park, not only did Harry have a tummy ache, but the heavens opened! We went to a friends house, but upon not being there long, Harry vomited and brought up his NG tube again! I have to say I felt v.v.v.v.v.v. fed! It was bad enough visiting LGI 2 days in a row, but to have to visit there 2 times in a day was quite frankly deeply depressing. But it had to be done. PAul picked Callum up from nursery and I took Harry to LGI. I felt utter despair that Harry was vomiting so frequently followed by frequent episodes of diahrroea, which actually meant Harry's nutritional intake was virtually zero! I discussed this with the nurses, but nobody seemed bothered and quite frankly had no empathy or understand the gravity of my despair over my rapidly thinning Harry. I was told, well the side efffects were expected and would be over in a week or so, at most. However, when you are deaing with your child on a 24 hour basis, this time frame feels like eternity. I wanted Harrry to be reviewed by a doctor whilst at LGI, but I was told I could be waiting some  time, the ward was busy and I felt if we stayed I would have just bawled my eyes out or had a complete tantrum myself that nobody was listening to me or understood what it is actually like to live 24/7 with this god awful disease, this though was no good for anybody. The nurses seemed to think it was as simple as putting Harry on his feed 5 hours on 1 hour off, but when we are in LGI so frequently this is impossible and when his tube comes out, the whole feeding regime promptly stops. In the night when Harry is sick, we stop his feed and I don't apologise for needing sleep and not setting my alarm to get up an hour later to turn the feed back on, so if we have 3 hours between Harry waking the feed stays off. WE are up several times a night with Harry, so we can't be up any more. That is why being in hospital has its advantages at times, as at least a nurse can supervise his feeds and medicines, whilst I sleep,  or try to inbetween his vomiting and diahrroea. I have to try and survive to support my family and the cooking, washing etc is still there and paul tries to continue to work. So in total Harry seems to take about 250 calories a day in feed, eats nothing else, drinks very little and vomits and passes nutrition out of his bottom too. Thus, my calculation of almost zero nutrition, leadig to an evaporating Harry!
So we go home and think Wednesday is another day! Alas at Granny and Grandads in the afternoon, yep Harry vomits, and yep his tube comes out! Another trip to LGI. However, upon ringing the ward I ask to speak the nurse in charge and ask for a doctor to review Harry before we leave. I take a suitcase in case they keep Harry in too.
Harry's bloods are taken as well as his tube being repassed and we wait and wait to see a doctor, whom finally sees us around 10 pm, we explain Harry's history and he recommends some new drugs, that are promptly stopped the next day by another doctor! We stay overnight and Thursday we spend all day waiting to see the dietician. We see another consultant, whom decides Harry looks better than when he last saw him during high dose chemo, I disagree though! Although admit the parental view will be different. I explained that the responsibility we feel looking after Harry at home is great. I explain that when he was poorly with high dose chemo,  he was put on an intravenous feed and I thought that should happen again, as his nutritional intake is zero. The consultant wasn't taken with this idea, as the side effects for Harry should soon subside. However, I felt that soon there would be nothing left of Harry. Nobody seemed to really get the gravity of how much weight Harry had lost in 2 weeks, which was 1/2 stone. He has never lost this much weight in all of his treatment. The medics banged on about Harry's immunty being low after high dose chemo and how we should not let him go to nursery, mix with large amounts of people, for fear he would pick up an infection, however if Harry loses more weight, then surely he becomes very vulnerable to picking up infections and his frailty means he does not have the ability to fight infections again.
We eventually see a dietician covering for our usual one whom, was on holiday. She spends a while with me,trying to understand Harry's situation and I explain about his significant weight loss. I feel grateful that someone is sitting down and listening to me. Harry is measued on the percentiless used to monitor children's height and weight. He is nearly at the 91st percentile for his height, but has dropped all the way to the 25 th perccentile for his weight. He used to be on the 75 th percentile and so the difference bewteen these ratios is great. The dietican would support Harry going into intravenous feeds as of the next day, however, we discuss Harry together with the nurse in charge. We finally agree to try Harry on his original feed overnight which has more calories in it. We had switched him over to a thinner lower calorie feed, to reduce sicknes and his tube coming out, but alas this had not had tthe desired effect. Therefore we agree that Harry should stay in another night to see how he manages on his original feed. Thereby, at least a few more calories are going into Harry. We would review Harry the following day as to whether to move onto te intravenous feed. The dietician was off the next day though, but left her home number if they needed to contact her.
Harry, takes the feed and vomits just twice in the night. It was very evident that nobody knew what to do with Harry. They could not increase his anti sickness medication, as he was on the maximum, there seemed no where to go to allevaite the side effects. This felt very disconcerting. At the beginning of radiotherapy, we learnt about the side effects, but got told generally medication could be given to alleviate them. However, Harry had tried different medication to no real effect.
I had a discussion with the nurse in charge with the ward, re a plan. The other, factor in all of this was the impending temporary closure of ward 31 for a week of cleaning. Half the ward was moving to ward 41. This is the ward Harry was on for surgery in April. A very noisy, sprawling ward. Beds are removed for parents in the day time, no drinks are alowed by the bedside, only drinks are to be consumed away from your child in the kitchen, which is small and busy, providing a space for about 40 families to use! There is a little hitler support worker who will shout at you if she sees you carrying a drink out of the kitchen and has the ability to make you feel age 2 again! Harry was in a single room, with our own toilet on ward 31. As diahrroea, was a major issue, sharing a toilet which was quite a walk away from the beds on 41, became very unappealinng and was a big factor in our grand plan. What I found highly amusing though, was that the nurses in charge had not even been up to 41 to check it out. When I was saying that there were 6 to a bay and no dividing doors, Neil the nurse in charge thought I was exagerating, but no! Later, when another nurse came back from visiting the ward, she said it was everything I had said. Just a long way from tthe comforts of ward 31, where there are only about 16 patients max on the ward and max of 4 to a spacios bay, with a door to close off noise from the other bays and corridor! As said in previous blogs in April, ward 31 is gold standard and the other paediatric wards strive to make this standard! Sad that oncology and Cystic Fibrosis have the best standard of wards downstairs. Think there is a 5 year plan for 41 to make the gold standard.
Going back to Harry's nutritional intake, to put Harry on an intravenous feed meant staying for the week on ward 41. This would be in no way relaxing for Harry. I remembered due to the noise last time, that Harry strugggled to get to sleep and being fatigued already, a relaxing environement was necessary. Really as a result, I agree to pursue the higher calorie feed, to try and get Harrry on the feed as many hours during a 24 hour period as necessary and to contact the ward if I felt things were again at breaking point. Between going home that Friday, another doctor reviewed Harry and felt concerned about Harry's lack of intake of fluids. She came back later and informed the nurse that he needed 800mls a day! Then the nurse came with 50ml syringes to get as much fluid down him as possible! This seemed bizarre, from nobody being bothered, to suddenly forcing fluid down Harry's NG tube. My immediate fear was that this would make Harry vomit more! Also within, 4 hours, his feed was turned up an extra 10ml an hour! Again bizarre, as in the past the dietician had advised only 5 ml daily rises! In a way I felt being in hospital was not acheiving anything and I now felt bullied to get more fluid into him. The ward was in chaos as everything was being boxed up to move it out for cleaning. I knew in the circumstances going home was right. At 3.30pm we found out Harry needed a platelet transfusion as his blood results came through. These were ordered and and I was sure we would be home for teatime, but no, these did not arrive till 8.30 pm, we ended up going to ward 41, albeit briefly, butby being there it reiterated why we needed to go home. We finally arrived home at 11.20pm!!!! Paul had gone to work and as planned, mum and dad had Callum to stay the night. So with Harry in bed, home alone! It felt very strange and lonely.
So the weekend. Paul took Saturday night off work, with the hope of going onto work Sunday night. We really tried getting Harry on his feed, but constantly had to stop the feed as Harry either vomited or had a tummy ache and then diahrroea. Sunday afternoon came and Harry really wanted to go to Granny and Grandads. whilst I took Callum swimming. Harry had fallen a seep on the sofa and Paul took him whilst we were out. However, my parents have never known him to sit there in so much silence, clearly very poorly.
Callum and I had a lovely time at the swimming pool. It was great to have fun with one of my boys. Callum is really coming on with his swimming and shouts to anybody in ear shot, 'look at me!' He really missed me and said I had left him last wednesday, as I could not pick him up from nursrey as I was in hospital with Harry. He feels very left out at times, and this reflects on his attention seeking behaviour at times. What I have failed to mention thus far though is that Callum is in pants and has actually had very few accidents and mostly does a poo on the toilet too! He was very ready for going into big boy pants and has for a while done wees on the toilet, so the progression has been quite easy, though we are still very proud of him! Though he knows he gets a sweet if he wees, so seeing as that is the way to Callum's heart, then he does more wees on the toilet!!!!
Not long after our return from swimming, Harry wants Granny and Grandad to bring him home. Harry had a tummy ache and once homme, vomited and yep, his tube had come up again! So distressing for all of us! I drive Harry to LGI, we are passed from one ward to another due to the closure of ward 41, we get the tube passed quickly. Nobody was bothered about Harry, Think that was his 8 th tube in 2 weeks! He just can't not have them, as he can't tolerate his medicines any other way, there are too many of them and he won't eat. Paul couldn't go to work again on Sunday as we were back into the evenng and well into Paul's shift. Goood job they are understanding!
So bank holiday Monday and Paul's official day off. We had plans to see friends, but Harry was too, unwell, so these were sadly cancelled. Harry slept most of the morning on the sofa. We try to get out on such a rainy day and head to Paul's parents. Life doesn't get any easier as both boys cling to me and won't let anyone do anything for them. They get so jealous of each other at the moment. Harry seemed in an incredible bad way, not interested in playing with any toys, very, very sad to watch.
I decide to contact the hospital with regards getting Harry reviewed by the dietician on Tuesday. Again we have to cancel plans for a lovely day out, the plan was to go on a Candleighters trip to RAF Linon on Ouse. The Mcmillan nurse rings me late morning as she is trying to speak to Harry's consultant re, any way of managing Harry's constant sickness and diahrroea. I wait all day for a phone call, only to be told to try the original anti sickness drugs that Harry was on. I had asked for Harry to be put finally on an intravenous feed and you can tell how desparate I am as ward 41 is the last place I want to be. However, an intravenous feed would not be granted, as Harry should begin to feel better.
Well its Wednesday today, Harry has had a few doses of the old medication. It has stopped him vomiting so much, but instead of vomitting he seems to have an almost permanent tummy ache and feeling that he is going to be sick. Therefore the chance of getting  his feed on today has been minimal. How can I put it on when he is telling me he is feeling sick! I think actually vomiting made him at least feel better for a time after. Harry did request some grapes at teatime, and it was lovely to see him eat a couple, made me think we were turning a corner, plus he was wanting to drink milk and water. Yey, I thought how fabulous, until at 8 pm Harry vomited and yep his tube came out! I was all for rushing Harry back to LGI, but Harry had his bloods taken today by the community nurses and I knew this afternoon that he needed a platelet transfusion. I'd arranged to get that done tomorrow after Harry's radiotherapy review at Jimmy's. I knew to repass his tube, he would need platelets first and these would need to be ordered. If I took Harry he wouldn't be home probably before midnight. Harry was so tired, it just seemed too crawl to take him. Therefore, he now has no NG tube, which means no feed till lunch time tomorrow and no medicines.
Utter despair continues. We have no life, just an existence. An existence to sit next to Harry, who has such huge attachments to me, I feel school is never going to happen. No real service input to support us. I have asked for a continuing care reassessment, the head nurse whom visited this a.m. still thinks we have no chance of reaching the decision support tool crieria. I looked at the framework yesterday and mentioned that in certain cases the criteria does not always need to be met, but a different argument can be made to get funding. The nurse informed me that this wouldn't be looked at in Leeds due to lack of funding and staffing. I said this was not right, but basically I should acccept this. She admits Cancer falls between service provision,but won't help us fight for a single bean. Now I know why I am always late out of my office, cos I try and fight for people to get the best service for their needs. I don't give a dam that there is no money in the pot. If for my service users I see a need, then I see it as my job to put the best argument down for services and haggle, even if that in some cases has meant applying to funding panel 3 times in a row to get funding for a service, that I feel is invaluable to a family.
Sadly, this is health we are dealing with, not social services and I don't have someone who wants to fight for me, but is a yes, sir, no sir person. Probably why she is head of the nursing team!
I also hate people coming imto my home and decciding its their position to tell my children not to winge and generally repremand them!h As she told Harry. He was going on, but I tried to explain, that when he gets into situations whereby he is frightened and concerned of what is happening, he seems to chant that he wants something. At the hospital it was about going to the farm. I think when you have no control over your situation,  you try and create control and that often can be, to be demanding. I have seen it often enough in the clientele I deal with at work. However, this nurse has no compassion or empathy, but after every visit from her I feel like a failed parent, whom has kids up the wall! Yes, Callum had a tantrum as I had said I would take him to nursery. I hadn't realised that the nurse wanted to complete a full reassessment whilst she was there, otherwise I would have gone for the alternative 2pm appt she offered, rather than the 9a.m. one. Then Callum would have been at nursery. So, Paul took a screaming Callum to nursery. Again, confirming to her my apparent lack of skill at parenting! I want to shout at her, I do try and tell her how hard it is deaing with all this and she just replied that she is sure it is. But no, she has noooooo idea quite how hard this all is.
So we are at hospital thurs for a radiotherapy review and Friday for a review with Harry's  consultant.
Fun, laughter, happiness evades us and in its place a dull aching feeling of utter despair and and sadness. Harry looks like a kid from a concentration camp. If I stripped him and photographed him and put the pictures on TV, money would poor in, as it does on comic relief day, when they show kids with there ribs and shoulder blades sticking out. The definition of the knee caps being too apparent to be comfortable to look at without wincing. Well that is Harry and it feels no one cares, no one, not even God at the moment, as why is Harry still vomitting! Paul and I feel if this goes on then Harry will die. I asked the Mcmillan nurse yesterday how thin you needed to be, before the organs pack in! Well, we will see, the story ends one way, lets just hope we can grab some happiness soon, before our whole family is destroyed by this disease. This is no life for any one of us!

Thursday, 23 August 2012

23.8.12 - utter despair.

Well in LGI again, no wi-fi so I am writing this on my I - phone!

To commence where I left off last week!

Harry's tube had come out and Harry was due for his penultimate radiotherapy treatment.
The radiotherapy went fine, Harry listened to One direction, which Lucy the radiographer had brought in especially for him. Harry was isolated though from the others as he had diarrhoea in the night. We had a special guest today, granny, at Harry's request to see him having radiotherapy. He was very excited about this and showed Granny what happens, now a very knowledgeable boy regarding radiotherapy.
We had a review with the radiotherapy consultant, whom referred us back over to the team at LGI to reassess Harry. His bloods had been taken and they indicated that a platelet transfusion was needed, before they would repast his NG tube, in case the tube caused any bleeding as it goes down. Platelets help with clottIng, so very important if any bleeds were to occur.
Harry was very disheartened and unhappy about having to go to LGI. He was wanting to go to the little farm near the airport in the afternoon, so this became his chant, wanting to go to a farm.
I was very worried about his evident continued weight loss as he got on the scales in radiotherapy. I needed to discuss this with a doctor in the oncology clinic. Whilst waiting for the platelets to arrive we are seen by a new haematology doctor who was on call that day. She has seen Harry's full blood count and as he is not clinically dehydrated she is keen to send him home, on the same anti sickness drugs, that clearly are not working. By chance a nurse who saw us in radiotherapy earlier cane in the room as the doctor was there and played devils advocate. She asked what I thought should happen and I said that I thought he should be kept in overnight for his medicines to be reviewed. the nurse carefully worded things, so not to undermine the doctor, but basically thought that this was needed, as Harry was losing weight and continued to vomit abd diarrhoea had commenced, full throttle! Throughout all this discussion Harry was ensuring no one forgot about him, as he grunted and groaned about a tummy ache, in between chanting that he wanted to go to a farm, though clearly too unwell to go to one! I was holding back my own agonising heartache at having to witness Harry in this state and wanted to tantrum on the floor myself that Harry was soooo not well and how the thought of him just being sent home again for us to play nurse absolutely appalled me and terrified me! I don't get a day off fron this job and exhaustion probably doesn't come close! However, I maintained my dignity and with that power to exert my preferences over Harry's treatment.
A different nurse set up Harry's platelets and was nearly in tears herself at the state of Harry and it was decided that Harry would be admitted to observe him.
Once he was transferred downstairs to our usual ward, where he knows all the staff and he had their attention he transformed! Funny that! He was isolated again, but he had one to one attention and all the nurses and play workers greeted Harry with a smile!
Doctor Kevin, a fantastic doctor who can really engage with, well everyone and make them laugh, a rare feat! Well he reviewed Harry. He immediately took him off one anti sickness medication as apparently the combo that he was on could cause seizures! He was put on a new anti acid drug to ease reflux and the burning sensation in his gut. Well Harry was sick again the thurs night, but was in good spirits all Friday and so released back home. Radiotherapy was over! The relief as harry got on the table for the last time was unexpectedly overwhelming and i shed a couple of tears as i went into the observation room, managing to compose myself in time to speak to harry on the intercom. I transported harry between hospitals and as we returned to lgi we listened to one direction top volume,
All 2 songs we have over and over, with a huge smile on our faces! The overnight stay in hospital meant the responsibility of caring for Harry had been lifted from my shoulders for one night and the nurses managed his feed, medicines etc! A little respite! 
So the return of Harry and we all had fish and chips for tea. Even Harry had a small amount! Yey! In fact fabulous, hope of this sickness being banished!
Feuding commenced again between Harry and Callum, so normality really.
On Saturday, Paul was off, so we had a family trip to Hesketh farm, (we figure Harry's immune system has recovered enough to put up with the possible germs on farms and anyway sometimes happiness is a greater thing) to fulfill Harry's wishes from Thursday! We spend a couple of hours there and  bump into some familiar faces too! Harry and Callum were made up to visit the farm and we managed to visit the mythological world of normal for 
a couple of hours. Harry even managed to ride on the big go kart, unsure at first if he had the strength to turn the big pedals, but sure enough, after a couple of attempts he managed a successfull 4 Laps round the circuit and Callum relished in being a passenger on either mine or Paul's lap. We even finished the day with a BBQ with, Claire, Tom, Adam and Sophie! The sun shone and we revelled in it! We revelled in being normal. No sickness and no hospitals.
However, as our story seems to be these days, Harry's sickness setback in after his medicines were given Sunday lunchtime. With the change in weather, came the much change in Harry from the chap 
he was on Saturday! That growing all too familiar tense heart ache started to resume. If only life was 
like Fifty Shades of grey and my ever familiar growing tenseness deep inside could be due to an orgasm, my world would be a better place. Alas, the tenseness as said is from that all too familiar heartache that goes with the inability to protect my child from the side effects that accompany radiotherapy and shatter all our worlds!

Wednesday, 15 August 2012

15.8.11 radiotherapy

Radiotherapy continues and with it an explosion literally of vomiting! Harry was clearly losing his appetite towards the end of last week, but hey we thought he is not actually being sick! However, this all changed at 6 am Saturday when Harry vomited and brought his NG tube back up, which meant we did not have a hospital free weekend, but a trip to LGI, to have it refitted. With this episode brought doom and gloom for me, as i thought the real side affects would have been another week away, from information given. Plus, we were so enjoying having vibrant Harry back, that I was neglecting to face the side affects, even though I knew they were highly likely to be there.

Harry was disheartened last Friday to have had his visit to hospital lengthened as he needed a transfusion at LGI after his radiotherapy at Jimmy's. He needed platelets, so these can be a  quick 30 mins, but its the waiting time  once at clinic at LGI that can be the real delay. Our goal Friday afternoon was to go to Harewood and meet friends up.This remained our goal and we got there in time to enjoy a good afternoon. It was the first time Isabella has been able to play properly with Harry, as on recent previous visits, Harry has felt unwell. So it was great seeing the children play and Harry running about. However, this halted like a scratched record getting stuck as said above, Harry vomited Saturday am and it was all change! Harry remained very sickly over the weekend. Would not eat anything and could hardly tolerate his feed on a night time down his NG tube. Therefore on the Monday when at Jimmy's for radiotherapy when they weighed him, I was not surpised that he has lost weight, the scales said he has lost 2 pounds. Not a lot to you and me,  but to a litttle  skinny boy this is a lot. I could have wept when i read the reading on the scales, as you don't know how hard is has been to see Harry lose weight during high dose chemo, but to gradually put each gram back on has been a joy to witness, so to lose 2 lb felt gut wrenching. Also, to know that Harry will be poorly for another 2 weeks, is hard to bare. I felt that he should be hospitalised and put on an intravenous feed ASAP and all medications to be given intravenously, as they were when he had high dose chemo. This would solve the problem of him not tolerating his medications and keep some weight on him. However, the logistics of Harry in reality being hospitalised, whilst Paul is at work, becomes another conundrum to think about.
The consultant for radiotherapy felt alternative antisickness drugs should be prescibed and commenced immediately and Harry would be monitored as always each day in radiotherapy, so only mon - fri.  We go with this. Harry was not in a good way though and the wait in pharmacy for the new medicines was supposed to be 10 mins, but an hour and  a half  later, we finally get them dispenced.  I was degtermined to stay waiting in the reception area where a groaning sickly Harry could be heard within any earshot distance, but even this did not speed the process up!
We then had to go to LGI for Harry to have a platelet transfusion and there whereby I commenced Harry on his first dose of one of the 2 anti sickness meds. In my scramble to get the medicine down Harry's tube I knock the bottle over and spill half of it all over the floor and of course it is like glue!!!!! Harry was so lethargic and sickly that unusually I had to wheel him up to ward 79 in a pram. He remained in unusual silence until we were done at 4pm. Then he had a new lease of life, unsure due to the medicine or due to the fact we were able to go home and Harry could help me pick Callum up from Nursery and play the football game he had been longing to do since we dropped Callum off at 9am.
Harry has been brilliant in radiotherapy, but this week is so hard as Harry really does not want to go to hospital each day.  On Monday morning having been put out about not being able to get out of the car and play football at Callum's  nursery for the first time Harry was protesting about all the treatment he has to have and asked why he could  not just go and play with his friends. He said this as we were driving to hospital and I had to fight back the tears as in reality life is so unfair and also trying to explain why he needs the treatment, that in fact if he does not have it his chances of playing with his friends in the future will be vastly reduced as he will have much less chance of ultimate survival.
Monday night seemed relativley settled and Harry managed half his feed bag, but alas was sick Monday am, but as Harry said at least his tube stayed in. I thought the drugs may have been working, but Tuesday lunch time he was sick again. He brightened up a bit at Granny and Grandad's, but Tuesday night was not  good either and at 4am his tube promptly came out again, just as Paul arrived home from work, which was a godsend as Callum woke up too!
Today (wednesday) Harry had his tube put back in, but there was no consultant to discuss Harry with. I did ask the nurse to bleep the dietician and we discussed Harry's sickness and I suggested  trying a thinner lower calorie feed, to be kinder on his tummy. We collected this from LGI today after Jimmy's and Harry has had a couple of successful half hour feeds this afternoon, so I felt good about this evening. That is until 11pm, whereby Harrry awakes crying, he has had loose bowels in bed and promptly sat up and vomited all over his bed and yup his tube has come out for the 3rd time this week. A prompt change of sheets and a clean up of Harry and he has resettled. Paul is at work and i guess it is best Harry just sleeps and we sort his tube out again tomorrow. This is truly horrific for Harry and he said tonight, 'what is all this sickness about' bless him. I feel we are left to our own devices. Radiotherapy is serious stuff. Harry's gut is targeted and i feel is creating even more problems than perhaps usual, I don't know, but when Harry was this poorly on high dose chemo, he was in hospital, monitored by nurses, doctors and the dietician daily. The responsibility was out of my hands and they made all the deisions re medicines, feeds etc. I feel really he needs intravenous fluids and a feed. I will be seeing the raditherapy consultant tomorrow. Harry is not keeping hardly any nutrition or fluids down. I am very worried about him and his weight plummeting.
I must say Harry has also returned to being fractious, very attached to myself, whereby leaving the room causes him to scream after me. This is so emotionally and physically draining for me. I can't begin to imagine how Harry's little body feels though, but he does summon bits of energy at times. In the playroom this am we were making pirate crafts. In particular a parot out of a cardboard urine bottle. Photos will follow when finished. He really tries to put a brave face on and get on with it, but he has severe stomach pains at times and then the sickness usually follows.
I knew that Harry would dip with radiotherapy and I feared how emotional it would be having seen him get his energy and vibrant nature back, to being a skinnier, little poorly  chap, not eating, sickly and generally being hit hard by this radiotherapy. You hope that the side effects will be mminimal and he will sail onto the next phase, but not to be. 2 more sessions left then hopefully he will pick uup towards the end of next week. We are exhausted with all this treatment and effects. The emotional rollercoaster continues. I'm sure it will take its toll physically on us, but for the time being we have to do our best to keep things going. i try to slap on the smile and get Harry through each radiotherapy session, knowing as said it is vital treatment and to keep encouraging Harry as best we can. The mask goes on and generally stays on as to take it off would just leave myself in one big heap on the floor, no good to anyone. Perhaps next week, when this leg is over, I anyhow will breath again and start to take the body armour off. Once Harry is well again and back to bouncing off the walls, I know I immediately smile with him  and the world is a better place.
Callum picks up on Harry being unwell and decides he is sick too at times. Callum wants to play with Harry, but he is not always up to it and Callum gets upset by this at times. They were playing brilliantly last week, so there is hope!
Another leg of the journey nearly complete though and with this Harry is just beginnning to sprout a bit of hair!!!! That I can't wait to see! Though no hair, equalls no brushing and reduces the effort needed to get out of the door looking presentable!!! Harry is so proud  that hair follicles are just about apparrent on his head. He copes so well and when picking Callum up from nursery several children were poiting at Harry's NG tube and asking him why he has it and why he has no hair. He answers thesm and explains he has been poorly and the tube helps him have food. He ensures they know its not for long though.
I am willing for  August sadly to be over, so we can get Harry back on track. I remember last summer working 4 days a week and thinking we must make the most of next summer, before Harry starts school, but you can never count on next year being what you had hoped. I guess, make the most of the here and now as best as any of you can, live for the moment!!

Sunday, 5 August 2012

Sunday 5th August

Well to continue where I left off on Friday, with regards the scan results, having been rudely interrupted by Harry waking up.
Well Harry's details were entered into a computer whilst we waited and we know that the computer 'said no' to having the third drug. Perhaps I think I feel somewhat relieved as the drug was very toxic and could have some severe temporary side effects. The drug was in phase 3 of trials, so has had some testing on children, but I guess the full immediate and long term effects are really still being discovered. It was a case that to get the immunotherapy drug, we had to put him forward, so he'll have this, but not the third drug. I know it would have been hard seeing the side effects and from my previous experiences with treatement tell me we may have questioned if it really may have been appropriate, but then there  was the option to pull out at any time if the side effects became too much.
However, since the third drug is not on our agenda, then no point thinking about it too much. However, I do think what if it ends up being the be all end of drugs to increase survival? Well can't ponder too much on it as out of our hands, but its weird as I thought I would just be whatever, but human nature  makes you want your child to have whats going to increase their chance of survival. I think when we have come this far and in particular we are seeing our much loved gregarious Harry spring back into action, then we see the child we had and want to preserve. Though as said previously, I know there are limits on the side effects that should be endured from treatment, so I am a realist in that I would never see Harry endure treatement that was causing him long term pain and discomfort, we would stop the treatment in consultation with the experts.
Harry is a little star with his radiotherapy. The first Monday was a dummy run and having completed the 2 MIBG scans the week before, whereby I can sit next to him and his choice now is to listen to 'Take That', the realistion that I could not be in the same room as him, sent him off on a wobble, but to combat this the play worker suggested he held a piece of string, which we unwound till it reached the room that I could be in and I pulled it tight so he knew I was there. This did the trick and we do this each time, except for health and safety I can't take it to the room as pulling it tight down a corridor caused a couple of the workers to nearly break their necks as they tripped on it when having to go back and reposition Harry. Now we stretch the string out to just round the corner of the room and this still satisfies him. The actual radiotherapy only lasts a couple of minutes. A blast on his back and a blast on his front. There are fish stickers on the machine, which moves 180 degrees to his back and through the intercom I can speak to Harry, so we pretend that the fish are playing hide and seek with him. Or the other day he was entertaining himself by seeing if his tongue would stretch to reach the machine that produces the rays! Harry always starts by going into the play room, whilst the staff finish the previous patient and he is making more crafty stuff! He has a wobble in the morning about going, but then loves the playroom, the staff and another 2 boys of similar age there too, that he has to be encouraged to leave! Just prior to Harry there is another little boy who is having 6 weeks of radiotherapy on his spine. He is younger and so needs an anaesthetic to keep still, so he is there much longer each day than us. This boy has relapsed from a different type of cancer, so we are always bumping into people with their own tragic tales! Though the family are brilliant so it seems on the surface. Their boy had high dose chemo like Harry and stem cell rescue 18 months ago, but as a result it is thought  one of the high dose chemo drugs has affected his walking and he can't walk now. So a very stark reminder of the potency of these drugs and the possible side effects.
Harry's stamina increases by the day and his appetite does too. His antisickness drugs have been increased to counter the sickness that can be caused by radiotherapy, so far so good though.
Today we visited Grandma and Grandad, with Granny and Grandad and Sarah and Olivia joined us for lunch, so a full house. Olivia is a couple of months younger than Callum. The rain held just about for our visit and so the 3 children had much fun playing outside on the toys Grandad accumulates. Also the boys love seeing the chickens and collecting their eggs too! We enjoy taking them home too, fresh, free range eggs! As the 3 children grow, they are really beginning to interact with each other. I can see chilled out afternoons on the horizon, with a glass of wine, whilst the children play with not too much interaction from the parents. Maybe next year, but good times I feel are ahead!
I guess on the subject of good times. It seems Harry can start school on September 13th, as the drug he will have at that time is in tablet form and given at home. The unknown is how he will react to the concoction of the 2 drugs and what impact this will have on him and his attendance at school. Once he has done the first 4 week cycle then we will have a much better idea as to how he will manage with the remainder of the treatment.
With knowing the start dates of Harry's treatment I can plan a party! The much talked about event for Harry, as we started plannning it whilst he was in isolation!!! It gave a goal!!! People can say there is always next year for birthdays and parties, but my ethos is that they can  never be ignored and in our case you can't bank on September 2013 being all rosie and dandy! Relapse being around 55/45 (this figure is from our consultant) you have to make the most of everything!!!!
So the information about Harry being cancer free is slowly sinking in and when people ask about Harry I can say he had cancer! It will be better when he gets some hair! Though I am used to his balled head that you just can't help stroking, like a babies soft hairless head!!!
I can't believe Harry is nearly 5. It feels like we have lost a year in some ways, lost the ability to do normal things as a family and we have been splitt up lots. Though as said previously it has taken Harry to be ill, for his dad to spend so much time with him! This is because of Paul's shifts at work, they greatly impinge on the ability to have family time. On the subject of Paul and work, he has been working 6 pm till 3am all weekend, so we have hardly seen each other to discuss harry's scan results. Paul is in his new job and with that again family time is greatly reduced, via his shifts in particular. He works 2 weekends, then has the 3rd off. But inbetween his shifts are either 10 am till 6pm or 6pm till 3am and each set of shifts is for 7 days. Therefore he is shattered when he gets to his days off! That is the way it is.  He is liking his new job though and the variation of daily operations make it very interesting.
Callum has been more clingy this week and reluctant to go to nursery. He knows Harry is in hospital each day and he seems to worry about Harry and i can imagine that he feels unsettled about the fact Harry is going into hospital as his recent experience of Harry being in hospital has meant we are split up. However, each night Harry has been at home, so I am hoping he can see this and next week he will be back to running into nursery with a smile. As when he doesn't although I know he enjoys nursery it always leaves you feeling like a bad mum and you have that little bit of your heart being wrenched as instinct wants to make your little boy happy and not leave them sad! Though, without nursery we could not manage, so it remains a must to continue with and hopefully I will get back to work soon and Harry will be in school and Callum in nursery. He has another 2 years before he starts school! He will be soooo ready to start by September 2014! Already he is so astute, but incredible comical with it! I took him yesterday to the first birthday party he has been invited to from a nursery friend, so Harry wasn't invited.  Callum was clingy at first, but got into the magician and shouting out abracadabra, then in the second half it was disco music and party games and Callum was tearing round encouraging 2 others to do so with him as he wore him and them out. It was funy seeing him dance with his nursery friends and I could see him being the ring leader. He wore his party shirt, which he was very proud of. I will get some pics on here ASAP as he actually let dad take a picture of him and smiled!!!!
So, week 1 down of radiotherapy and  2 weeks to go, well 10 days to be precise as it is closed Saturday and Sundays. It is a strange feeling knowing the final leg of treatment is on the horizon. This cancer has taken over our lives and completely consumed us as parents at times, it will always be there in the back of our minds whether it will return, but the light is there for a time when we are not in hospital with Harry every few days and life can begin again!

Friday, 3 August 2012

3rd August - Harry is definately in remission!!!

Yes, unexpectedly after radiotherapy we got a call to nip over to LGI to see our consultant with regards discussing randomisiation for the trial as they had got the scan results. Well we had just had the quickest turn around in radiotherapy and thoughts had briefly gone to having the rest of the day free,  but it seemed we needed a few more hours in hospital! So we head over to LGI. I phoned Paul to tell him we had a meeting with the consultant and he immediately jumped to as k whether the meeting hadbeen called to tell us that the cancer was back. Telling him it was just about discussing the next step, I have to admit i was trying to ignore my own niggling thoughts, that was it a smoke screen wanting to discuss randomisation trials and actually they wanted to see us quickly to tell me bad news!!!
Well we waited the usual time to see the consultant, but it was worth it as she confirmed that Harry's recent scan results all show that there is no cancer evident in Harry's body! Hip, Hip Horray!
Well we went straight onto discussing the stage of treatment after radiotherapy. Whereby I have to consent to Harry being put forward for the randomised trial for 2 drugs, one is immunotherapy and the other is a randomised drug, which is quite toxic and would cause Harry to be hospitalised more in the last 6 months than if he didn't have it. The side effects can be quite nasty. The immunotherapy drug willl cause a definate period of hospitalisation for the first week given, then it depends thereafter when administered once a month how Harry reacts to the first course if he will be hospitalised on every dose. He automatocally gets rhetonoic acid to take in tablet form for 2 weeks out of every 4 for 6 months. This can cause Harry to have pain, but shouldn't hospitalise him.

Anyway, since Harry has woken twice already tonight and Paul is working tonight, I will keep this short, so I can go to bed!!! I just wanted to share this news!

I will share some photos with you though!

Harry is keeping super still for 17 minutes, whilst he has his MIBG scan which involves using radioactive dye, to make any hotspots of cancerous cells glow!

The above show Harry keeping still for radiotherapy! The first shows the dots on his body being lined up with the green ray of light to get the exact spot! Then nobody can be in the same room as him so the room I go in I can see Harry at different angles on the 3 monitors and get to speak to him on an intercom. Again, no anisthetic needed to keep him still! Week one complete, but he has been the model patient!

This is nurse Kate whom Harry was so excited to see last Thursday when he had his first MIBG, however he was also sad to say farewell to her as she is heading to Sydney to work in the oncology department there!! Sydney's gain and LGI's loss! Harry Lurrrrves Kate!!!!

Harry, proud as punch to have had his arm painted. This lady comes once a month and is paid for by Candlelighters. Harry had all day in hospital last Monday in between radiotherapy at St James', then in LGI for a platelet transfusion and bone marrow aspirate, therefore this brief interlude gave him great pleasure!!!