Saturday, 31 December 2011

New Years Eve!

Well, should be out their partying, but decided to write the Blog instead! That dedicated. No, I can't be pulled out of my armchair to be doing the conga or any of those shananigans that go on!!!!
In truth, having 2 little boys means those days are on hold for the time being. We are just lucky to be at home with Harry and Callum, all under one roof!
Well it is the end of 2011 and what a strange year really. Our on/off house move situation was very stressful, within the first 5 months. Having eventually moved, we spent the summer enjoying our new home, but then, the unexpected happened and having had an awful October with Harry being poorly, and feeling like a neurotic mother beside herself, Harry was diagnosed mid November with having Neuroblastoma cancer!
We are coming to terms with this and the months ahead are uncertain, in terms of Harry's treatment plan. All being well if he meets his milestones, his tumour will come out end of Feb, then he will be classified as being in remission, but will then have another 9 months of intensive treatment to blast those final remaining faulty cells. In April he will have stem cell therapy to enable his bone marrow to regrow.
So an intensive year ahead.
I am very aware though that many people have difficult lives and have their own trials and tribulations to manage, so we are not alone.
I have certainly taken my recent experiences to heart and reflected a lot on what has happened. These experiences I feel though tragic, will enhance me as a person and enable me to understand to a degree I never would have anticipated, what the service users I meet and assess in hospital and their families go through. I hope that I can put my experiences into practice and provide an even better service to the people I meet within my job. However, the recent cuts to spending within public services, means that services are diminishing and being able to provide a decent service is going to become ever harder to achieve. Although, the key to getting services is recognising the need of the individual and understanding how crucial a service is to keeping a situation together, assessing the risks and putting a good holistic assessment together! That simple! Well maybe not, but persistance is also key! Passion too, as without that, well there may be no point!!!
Well beginning to warble on!
Well tonight was lovely meeting with friends for tea and watching our children run around and play together as 4 weeks ago, Harry would not leave my lap. However, tonight there was no stopping him having fun with his friends! He said he was worn out on the way home, but hopefully that means a good nights sleep into 2012.
His recent chemo drugs have been making him sick again on a night. In some respects it feels like having a baby again, having one ear out for him waking and saying his tummy hurts, which is our cue for running into his bedroom, turning his feed off and having a bowl ready for him to be sick!!!
However, to have him running around, compared to the sad, lethargic and in pain little boy we had throughout October and into November, is amazing!
We just hope that Harry continues to progress and remains the positive, brave, strong boy that he is. The fact also that we have the support of some lovely friends and good family means that we can provide that loving and secure place for both our boys and that will help us all get through this.
Harry's illness has brought to ahead the fact that our lives need to change. The shift pattern Paul has worked for the last 3 1/2 years, i think it is fair to say has taken its toll on our family life. He works 3 weekends in a row then has 2 off. But for 3 weeks we hardly see him, particularly while I have been working as the boys have been at nursery during the week, when Paul has his days off.
However, credit to Paul that he managed to get 2 job applications completed, one just prior to Harry being admitted to LGI and one completed within that whirlwind first week of Harry having all his tests and anaesthetics and us being delivered the mind blowing information around his diagnosis.
Paul as a result of his efforts had 2 interviews and was offered 2 jobs! He has decided, which one to accept, but the start date may be a few months away. The job still means shifts, but we should see more of him, fingers crossed!
So heres to 2012, new ventures, health, family and friends! x

Thursday, 29 December 2011

29th December

Harry has finished his 5th chemo session. He was sick last night from the drugs so fingers crossed tonight is not too bad. He has not had this set of drugs since the beginning of his treatment when he was poorly anyhow, so don't know how he will react to these drugs. Back in hospital Tuesday for Harry to have his hearing tested and to have a kidney test. Only in for the day so not too bad. His NG tube has stayed in for a bit now so hopefully not tempting fate by saying that!
Here's to a good weekend.

Wednesday, 28 December 2011

28th December

Harry is in hospital for his 5th lot of chemo. This is day 40 half way through his initial chemotherapy treatment plan. We got mixed messages and Harry was due his chemo on ward 79 not 76 so traipsed up there with our things. It was really busy as people have been delayed treatment to enable them to have Christmas at home , therefore we seem to spend till 12.30 waiting for something to happen! We also found out that Harry's ultrasound had been moved from next week to today, which was great, but we were not told this detail until after Harry had chosen his sandwich and chocolate cake, which then had to be retrieved from a tearful boy! However the ultrasound was at 2pm so not too bad! We have got the information that his tumour is smaller, which is fantastic, hopefully have more detail next week once the full report is done and given to our consultant. We are back in next tues for a kidney and hearing test for harry so should meet up with the consultant then and get the bone marrow results too. I met with Sue the consultant this afternoon to discuss the next few months of treatment. Just as you are feeling positive about things, she highlights that Harry has to be rid of the cancer in his bones and bone marrow prior to the tumour coming out, which we know, but also to highlight that if he is not rid then he has to have more chemo, which we were also aware of, but if in this category then survival rate is lower!
Anyway, fingers crossed he is not in that category and it will be end of feb he has the tumour out, then radiotherapy for 3 weeks then high dose chemo and stem cell therapy. So April will be spent in hospital. He is actually likely to be quite poorly then and could be out of it a lot on morphine, so I think it'll be our spirits that will need lifting! To get that point will be a massive hurdle. Really getting to the point of having the tumour out will be truly magnificent!
Anyway back to today! Harry's blood count results have just come through and his HB is low so he will have a blood transfusion in between chemo treatments! I wasn't sure if they were dipping or if his fractious temperament at times was due to his cold. I think again my initial instincts were right! A woman's intuition!!

Monday, 26 December 2011

Boxing Day

Harry, woke up a few times in the night, but awoke in reasonable spirits, despite his cold and streaming nose! He and Callum played with their new toys this morning.
This afternoon, we went to Ilkley and we took Harry's bicycle. He actually rode it, a little hesitently, but this is the first time in a few months! He last took it out the end of September, but only had a little ride as he got tired and tearful, which was out of character for Harry. Now, looking back, we think this was the beginning of him showing signs of being unwell and tiring more easily.
Anyhow, seeing Harry ride his bicycle gave me the largest lump in my throat as you can imagine, because I really thought it would be months before he would be doing this again. Being able to get out with the boys again, even for a little while, was fabulous and felt a bit like the life we had a few months ago. Callum loved riding his trike too and was wanting to race Harry.
The day was finished by having heated up left overs in the form of a casserole, which Granny and Grandad came round to share.
A lovely day!

Sunday, 25 December 2011

Christmas Day

Well Happy Christmas to all who read this and thank you for all your thoughts and prayers over previous weeks. We are touched by how many people have Harry in their prayers.
Well Harry did not have a good night and not due to his excitement, but because he has a cold and seemed generally unwell. He has had a few bad nights, so I was thinking that this is how he was going last time his blood count dropped and he was quite anaemic. When he woke he seemed quite fragile and emotional. He enjoyed opening his presents, but I must admit both me and Paul thought here we go, Christmas at LGI. We contacted a nurse due anyway at 11.30am to come prepared to take his bloods. He did go to church in between as I thought a change of seen may improve his mood, however his dad had to pick him up half way through! On his return, and having set his scalextrics up he became much brighter!!!
When the nurse came she thought his bloods did not need taking as he had brightened up and to see how he is when a nurse visits tomorrow, which we agreed.
The trouble is we do not know, what is general tiredness and cold and what is a result of him being anaemic. Also he is not able to have calpol or ibuprofen whilst on chemotherapy as this can interfere with his white blood cells, or the ibuprofen does anyway, I think paracetomal is not given without higher authority for the risk it could mask a temperature and infection.
Anyhow, having stressed out this am and been really worried, Harry actually had a reasonable day and so did Callum.
Harry enjoyed starting to make his lego police station and Callum enjoyed trying to interfere!!!!
So we did manage Christmas day in our new house!
We cooked a lovely Christmas lunch and we are now about to catch up on some TV with a festive beer!
Yesterday we also had a good family day with my sister and brother in law and had lunch at my mum and dads.
Fingers crossed for a good boxing day. Hope the weather is nice and we can get out for a walk, otherwise the festive food, will mean losening the old belt!!!!

Friday, 23 December 2011


Harry has had a really good couple of days. Yesterday we had Natalie and Michael to play in the morning and then met them and Sophie and Adam up at Tumble Town  a play centre in the afternoon. Harry was on fine form and loved racing around in the coupe cars and going down the slide. It was really good that he could play with his friends.
Today Harry had to be at LGi for 7.30am. So Grandma and Grandad came over to stay to take Callum to Nursery for his last day before his weeks Christmas break.
Harry had a bone marrow biopsy. This is a mid way test within his chemotherapy treatment plan. The test will either see if the cancer is there or not. In some cases the cancer has gone at this stage, so we hope and pray Harry's has, but if not he has another 4 doses of chemo prior to a retest. He has his ultrasound on 6th Jan to see if the tumour has decreased in size too.
Hary had to fast for the biopsy and it was hard telling him this morning that he could not eat or drink anything, however, he went into theatre at 9am, which was good, so not long before he could eat again. I felt quite emotional, as the last time he had his bone marrow biopsy he was so poorly. This time he was able to walk down to the theatre and afterwards, instead of lying very wearily in bed, he was sat on a nurses lap, having a story read to him, when we were able to go and see him in the recovery room.
The difference in him is amazing and this afternoon he has been able to play, I thought he would have been shattered after playing yesterday and from the anaesthetic this am. He did sleep in the car on the way home, but he has managed very well.
So we await the results of the biopsy, which with the bank holidays may take longer and not ready till Jan. However, Harry is amazingly on form, he does get weary and emotional at times. However, 2 weeks ago I would never have thought he could be so well, so the chemo is certainly doing something good.
I do feel a bit like I am holding my breath, as he could dip and have an infection at any time, as any kid can, but then Harry will have to have IV antibiotics and be in hospital for 5 days.
We did see a dentist in hospital for Harry today, and we learn about more possible side affects from the chemo and that is that it can affect the growth of his adult teeth, but we will deal with that if and when that happens! Along with all the other possible side effects!
Anyhow, for now Harry is really good, so we will enjoy it.!

Wednesday, 21 December 2011

21st dec

Not long till Christmas. Feel much less bar humbug about it all now Harry is home and he has had a good day today. I popped into my work today and took Harry. Callum was in nursery. Harry enjoyed the visit to  my work and all the attention, he was running around, but after about an hour was ready to go and zonked out in the car! We went to his nursery's Christmas party, which he mainly enjoyed, he felt overwhelmed at times, but stayed to see Santa - again and get a present. It was Callum who was the nightmare at the party and threw an almighty tantrum!!! My parents took him home, and I thought it was Harry whom I would be taking home early!
So a good day and may they continue through Christmas. My parents bless them have been organised and bought all the food for the festive period, saving me the agony of queueing up in the supermarket!!!! So thank you!

Tuesday, 20 December 2011

20th dec

Don't know what happened to yesterday's post as the first part didn't seem to save properly and so I have repeated myself with the continued bit! Oh well technology!
Anyhow Harry has had a good day. He has done lots of painting and sticking, played on his DS and watched some telly.I thought I was going to have no visitors, but in fact granny and grandad came and uncle Conrad surprised us by visiting too. Then my friend Becca came at tea time. So a busy day and I managed and hour shopping in Leeds. So from a day I was dreading to a happy day and home now for Harry!

Monday, 19 December 2011

19th December continued!

I tried editing and adding to
Last post but lost what I put twice so starting a new one!
Just felt like I should put the bar humbug feelings in context! I met with the social worker and consultant today. Basically my thoughts of trying to fit our centre parcs holiday in between treatments in feb is naive. The full course of chemo treatment will make him feel lethargic and if well that is a bonus. The effects of the radiotherapy following will likely be with him for months so November is more realistic for a holiday. We may be able to fit something in between but it will prob be last minute. So feel our lives are on hold for months. In the grand scheme of our life these months are a fraction, however right now I will be honest and admit that yes I am jealous of those around me having get togethers with friends and family, planning holidays and outings etc. I do not begrudge anyone doing this and would always want friends and family to have fun etc but jealous yes a bit! Ok a lot!!!

19th december

Just a quick post as writing this on my phone! HArry has had a good day. The transfusion seems to have made him perkier! So that's good. He's been busy on his DS, drawing and making little Lego vehicles! He should finish his chemo around 8pm tomorrow. Can't wait for it to finish as finding Harry being isolated hard as I can't chat to other parents so easily as he can't go in the playroom. This is a shame as there are some familiar faces popping up and by sharing experiences of dealing with a child having cancer makes you realise that I am normal! As sometimes it seems harder than it usually us to carry out mundane tasks and co-ordinate myself into action. One mum said they went to m and s with full intention of buying extra stuff for Christmas but came out empty handed!
Again I found it difficult making the transition from being at home to back in hospital. Once here after an hour or so I settle back in. But they are 2 completely different lives, home And hospital. Also so many of my friends have poorly children and cannot visit, so time goes slow. Plus the time of year, everyone is so busy as they should be. Just feel on the periphery of christmas. There is a lot of peer pressure around Christmas and I think I just wish the whole thing would go away! I will be shot down in flames by many for writing that!
I feel for all those people with no family who are on their own. Some won't mind but others will probably be glad when all the hype is over too!

Sunday, 18 December 2011

18th december

Harry is back in hospital for his chemo treatment today. He did not have a good night and had a nose bleed at one point so I was thinking he may be anaemic as this is one signal. He was also very grumpy and lethargic this am, so was relieved we would be seeing the medics and having his bloods done. Anyhow sure enough his blood count is 6. Something, so quite low, thus having a blood transfusion prior to his chemo starting. This means that the chemo starts later than anticipated about 5pm as a transfusion takes about 3 hours to go into his system. Looks like another evening discharge and I won't make my ladies night out in Otley! Will see, but Harry comes first. Will just have to paint the town red in Jan, an excuse for another night out, I'm sure the ladies won't need much persuading!!!!
Looking back on the last week, Harry had a fab start, mon, tues and wed, he was great and on top form, but thurs, onwards his energy levels were dipping, and no doubt a correlation to his blood count slowly dipping. Probably accounts for the ducks fiasco on Fri, though not for Callum! That was just Callum being Callum!!! But Harry seems to feel very vulnerable when his blood count goes down and just wants me! On the sat he wanted to come into town with me, but when it came to leaving the house he did not want to go. This is probably due to his blood count going down, as his brain said he wanted to go, but he did not have the energy levels to follow through.
Oh well, hopefully the transfusion will give him the energy he much needs, to survive Christmas.
I do need to find out his platelet count prior to leaving LGI, so I know whether a community nurse can re pass his NG tube if it comes out or whether the levels are too low and thus a trip to LGI, if the inevitable happens, which no doubt it will. Have not gone a week without it needing to be repassed, but can keep our fingers crossed. Ward 76 has an open door policy over Christmas, so we are thankful for that. How they manage that I have no idea!!!!!
Well since Callum has had chicken pox, Harry has had to be in an isolated room for this stay, in case he is a carrier of the virus, plus point is a room on our own with own toilet and sink, no shower or bath though, so not quite hotel like. Still liked that room on ward 51 that we started out in, that had its own bath!!!!
However, Harry cannot go and join in with activities in the playroom, or go out on the corridor. The room is not that big really. It is a room that we would get when Harry has his stem cell therapy round about Easter time, if he meets his milestones as anticipated. I told Paul that this is a possible room that Harry would be in for 4 - 5 weeks, and he could not go out of the room for that period!!!!! Paul, had not realised this fact in its entirerity!!!! The thought of entertaining Harry and keeping his spirits up for that length of time, without his behaviour dropping dramatically is going to take some thoughtful planning!!!!
Hence, having realised that Grandma and Grandad had bought the same toy as us for Harry for Christmas, a lego police unit, we took ours back and exchanged it for a fire station, put away either for his birthday or if needed, for his period of isolation. Not that we want to spoil him, I am truly aware of this issue, but he has to have stuff to keep his brain active and play with!!!!!  At least being 4 he is not aware of the cost of things and his brother being 2 even less aware, hence there is no you got such and such and I haven't!!!!!
Oh well, a few months to go before then, getting carried away with myself!!!!
I am at home tonight and Paul is staying with Harry, my turn tomoroow night. Paul is back at work Tues, but at least on a flexible basis, for now!
I have wrapped presents all night - the joys of Christmas! And am ready for bed!
I have asked for an i tunes gift voucher from my sister for Christmas, to add tunes to my fab new mobile. I am so in love with the song Starlight - by Matt Cardle and will definately download this. Was not that keen on him in x factor, but this song has that feel good factor anyhow!!!!!

Saturday, 17 December 2011

17th december

Well Harry woke up another 2 times before midnight and upon waking again just after midnight he was sick. The only thing is the noise woke Callum, so then I spent a good while trying to settle him. Harmony then at least lasted till 6.30am!
As Harry did not need to have an injection in his leg today we were not tied to the house this afternoon. Therefore we went to Huddersfield to see Grandma and Grandad. The boys had a lovely afternoon. We have not been able to visit in weeks so made a nice change. The boys also saw their little friend Olivia again too. Grandma and Grandad had their Christmas decorations up including presents under the tree for Christmas, so that did raise the question of why are they there and who put them there, which led to a series of answers in the form of well Santa is so busy he visited early etc.!!
We bathed the boys there and transition
to their beds at home went surprisingly smoothly. So fingers crossed for a better more settled night!
Harry goes back into hospital tomorrow am, but should be home tuesday. He understands that he has to go back so that is good. Can't believe Christmas is just about upon us. A busy week ahead anyhow and also nearly another year is over!

Friday, 16 December 2011


Well tried to get out this morning with the boys, to feed the ducks by the river in Otley. However, it was the shortest trip ever! Partly due a typical tantrumous 2 year old, made more tantramous with chicken pox and a grumpy Harry! They seemed to love the idea at home, but once there they fought over who was carrying the bread. Then Callum would not walk, then Harry became wingy. Finally at the ducks, Harry was terrified that the pigeons were round his ankles and Callum just wanted to eat the bread! The trip was aborted after ten minutes!!!!
Once home, calm did not seem to restore itself and the trip to the dentist to have my filling suddenly seemed more favourable than staying at home!!!!!!
After my filling at the dentist I squeezed in some Christmas shopping, which included getting some goodies from Waitrose, with an alcoholic item (not to divulge as that would spoil the surprise). Now I was pushing it time wise as needed to get back home, so dashed round and having queued was horrified to be asked for ID for the alcolic item. I guess I should have been flattered, but I did feel the women needed her eyes testing, at 35 I know I can pass for a little younger, but come on not under 18!!!! I did not have ID on me and the thought of having to revisit the store to buy the item another day, nearer Christmas, probably with the kids and larger queues, well the thought nearly reduced me to tears!! My numbed mouth did not help, as I could hardly get my words out. Anyway, the woman got a supervisor after a wait and he took one look at me and passed my as being over 18!!! As said she needed her eyes testing!!
However, the day was redeemed by our Christmas party this afternoon. We do a secret santa between the children of my 5 friends from baby group and our eleven children. We have previously met at Playdays, but this year as when organised Harry was not wanting to go and be in crowds of people, it seemed a good idea to do our own thing so went to High Royds social club, where there is a really big room and Heather who runs it will provide a tea at a small cost. So with some toys that we brought up, a litle bouncy castle that we have and some music, the do got going. Steph had prepared some chocolate lollies for the children to decorate and Ayshea had got Christmas decorations for them to decorate too. So all very Kirsty Allsop.
The children seemed to enjoy themselves, so hyped up and fed, bed time loomed thankfully!
Bedtime went pretty smoothly, thankfully as Paul is on his Christmas do tonight, so set off early, before they were in bed.
So far Harry has woken up once, but fingers crossed for a good night of sleep!

Thursday, 15 December 2011

15th december

Well Paul and I have got out together for the eve in the first time in a while. Feelnearly normal. Though those that know me will say that can never be so!
Harry has had a good day despite being sick during the day whilst on his feed for an hour. However, he seemed fine after. He just has no apetite and won't eat much despite trying to make things he likes.
We have a date in jan to take Harry for a midway ultra scan to see if his tumour is shrinking. Feel nervous already with regards the outcome. However, the chemotherapy is doing something as Harry is getting better by the week. So we can only gauge that the chemo is doing what it should by how Harry is physically.

Wednesday, 14 December 2011


Harry is becoming really interested in learning what is wrong with him, which is really good. We tried to explain to him in hospital, but he became so withdrawn, that he would not engage with us. That was his way of coping at the time. He had been given this duck called chemo duck, which has lines coming out of it for the medicines to be put down, but in hospital he did not like it and I had to hide it in a draw. However, I put it on his bed at home and the last 2 nights he has been paying a lot of attention to it, he has been playing with it and connecting a syringe to it, copying what is done to him. We Have also read the Lucy has a Tumour book last night and again tonight. In hospital we only half got through it, before he lost interest. So that is great that he is understanding why he is taking medicines, to shrink his tumour and get rid of the cancer in his bones and bone marrow, so hopefully he can have his tumour out in Feb, then have radiotherapy. It really helps that he undrestands why he is going through the treatment that he is.
Harry was sick again in the night, but at least his NG tube stayed in, it was just a full bed change!! I thought Callum may have woke up with the commotion, but thankfully he slept through! Harry despite being sick has had a great day and was able to go to Granny and Grandad's, whilst me and Paul had to pop into our respective workplaces. Callum went to nursery.
Harry even walked around town with Granny and Grandad and had energy left to be playing hide and seek at home. So it is fantastic to see the old Harry back, with his sense of humour and sense of fun. It seems that the chemo is working, He is not on pain relief medication at the moment, just anti sickness drugs, so that is great.
I went into work, for the first time, since I went sick just prior to Harry being diagnosed and it was lovely to see everybody. I had a chat to my manager and feel much better about my work situation. I also got a lovely hamper, so thank you, lots of nice goodies.
I had, had a brief look at benefits if I can't work and although should be aware due to the field I work in but was astounded to see that Carer's allowance is a pitiful £55 a week. Carers are so underpaid, as without them the state would be up the Kyber without a paddle!!!! I know that there can be other benefits added on, but that depends on a lot of other factors, but hopefully I can work in some shape or form and not have to claim!
I also managed a mammoth shop at Aldi, nearly bought the shop up! I also held the job up by bagging stuff up as it was going through, otherwise I was not sure it would have all fit back into the trolley!!!!! Usually you are expected to throw it in your trolley and bag it after to speed the job up, but the amount I spent, I thought what the hell! Prob only chance of shopping prior to Christmas without the kids. Was a bit like on supermarket sweep, however no bonuses or Dale Winton - sadly!
Well, its official, Callum has chicken pox!!! Prob why he did not settle well last night, not the wind as thought, but cos he was under the weather! I phoned the hospital to let them know, as it is drummed into you to alert them when Harry comes into contact with anyone with chicken pox, but they did seem bothered and felt that if his bloods showed that he had immunity 2 weeks ago he'll be ok. There was me thinking we would have to rush him down to LGI for a blood test to determine his immunity, then await results to see if he needs an injection to boost his immunity. But they were blase` about it. So whatever, at least told them.
It is pobably better Callum gets chicken pox now anyway, rather then next Spring, when Harry had stem cell therapy and immune system wiped out! Just hope Callum is not too miserable over the next couple of days! Dosed him up on calpol and piriton and put eurax on spots, so fingers crossed he sleeps ok! So far so good!

Tuesday, 13 December 2011


Today didn't go according to plan. Yesterday lulled us into a false sense of security!!! Harry's NG tube came out when he was sick at 5am this am, so our hearts sank! Though, I had thought that the community nurse could put it back in when they visited at 3.30pm to do Harry's injection, however following conversations with them this morning it turned out that his blood results from 5.12.11 showed that his platelet count was below a certain range for the community nurses to carry out the procedure without risks in our home. Hence, a trip to LGI, whereby he had bloods done and his platelet count tested, having waited for the results his count was fine and no transfusion needed, so they could do the NG refit. The trouble was, they were so busy and with only one nurse on, so I believed, we were there about 4 hours! The refit was traumatic again, and Harry puts his hands on his face, so you have to restrain him. One of the hardest processes to go through. Anyhow at least it was down on the first attempt. We then came home and Harry had his injection from the nurse in his leg, to increase his white blood cell count to reduce the risk of infection. He was actually much calmer than previous visits, so that was a relief.
At least we still got to spend an hour with Isabelle across the road and Harry helped me decorate our tree. When decorating the tree, Harry got so excited and said that 'he loves Christmas'. It is lovely to see that excitement as it is the first Christmas that he has really taken an interest, properly. That he gets the whole thing.
Also thanks to Val making a stew, we did not have to worry today about preparing a meal, so we could fit everything in, that we wanted to do!
Harry has been playing on his DS today. He particularly likes the camera on it and snaps everything, particularly random things like the carpet and toys! He has also discovered that you can record your voice too and then distort it on playback, with various options. He was also playing a bit of mario brothers and I can not believe how quickly he figures it all out, cos I haven't read the instructions and his dad has not spent much time showing him, yet he manages to press the right buttons! He was playing on the hospital's DS the other day and borrowed super mario Kart. I thought he'd never manage it, but when I looked over he came 5th out of 8 cars, so not bad!!! He saw the playstation at the day clinic today and that had been loaded with super mario Kart and he just started playing that. Technology to them is nothing so it seems. He's not really been allowed to do much previously, so its interesting to see. As long as he has a mixture of interests, then I think the DS will be brilliant for him in hospital. If he can master the photography side too, then  we can upload pictures onto the home computer and print them out.
I guess life will be difficult to plan for the forseeable future. It was great seeing friends yesterday, when Harry was so well and we made the most of the day. Harry has actually been in good spirits today, it was just the fact that we had to go through procedure and spend so much time at LGI today. Yesterday, I thought, could I get back to work, then today I think with the stresses that the precarious blood counts present and Harry's 'bloody' NG tube - I think not at present. Harry is hardly eating, so the NG tube is necessary to give him the calories he needs. We are very, very gratefull to Paul's work for providing him with the space needed to deal with this situation, which has greatly impacted on our lives and enabling Paul to be fully supportive, to us all in such difficult times, without having to worry about work. He wants to get back to work as I do and on a flexible basis he will be back in next week.
So we shall see what tomorrow holds. Hopefully, I can pop into work and Harry can be looked after by Granny and Grandad for a couple of hours without hiccups and I can go supermarket shopping - Yay, the joys!!!!!!!!

Monday, 12 December 2011


I can't believe that it is just over 4 weeks since Harry was admitted to LGI. Today he has been on good form and has been in very good spirits. We have had friends round and Harry enjoyed their company. Sarah, from Huddersfield saw Harry just after his operation in LGI and could see how poorly he was then and how far he has come today. To see him jumping around at home was brilliant to see. Lets hope this phase continues for as long as it can.
Harry is enjoying helping me at home and has emptied the dishwasher today, Callum likes to 'help' mummy too, however when I turned my back and left my beautifully fried eggs in the pan, I did not expect moments later to see that Callum had stirred them to mush!!!! Talk about needing eyes in the back of your head!!!!
Callum is getting into the Christmas spirit and singing Jingle Bells though they are the only 2 words of the song he knows!!! Harry likes playing Christmas music on his DVD player and dancing.
I think having seen Harry so poorly and miserable for so long, these moments and days are to be treasured! He has his chemo next Sunday and he has different drugs then, so don't know if they have different side effects, so will see. We will enjoy this week anyhow!

Sunday, 11 December 2011


On a computer at last! Harry's stay in hospital was not as bad as I thought it would be. Apart from his NG tube needing to be refitted, as thought on Wed it had come out quite a long way and after a falllout with Callum and a bit of carfuffle on Thurs, his tube came out another couple of inches to the extent he was gagging and then vomiting, so I pulled it out and it was actually hardlly in. As we were at the hospital anyway Thurs they refitted it then. However, although spending time discussing with Harry that he needed it to be refitted, he covered his face and the whole thing was a struggle involving having to restrain Harry. The first 2 attempts had to be aborted as the tube kept coming out of his mouth and not down his throat. He would not swallow his drink whilst the tube was being fitted, which makes the job much more smooth. The third attempt, with 3 staff members and me and 30 mins later, was successful. All that was missing was a stiff G and T for me after, though I think I needed a bottle at least! I think the nurses felt they had more than earned their wage after that effort!
He had the chemo commenced upstairs on ward 79 the day clinic, so as to finish earlier on Sat, so he could go home.
Once on ward 76 where we were before for 2 1/2 weeks, everything was more familiar and there were staff working, that we knew and the fact we were back in hospital was not so bad. Harry complied with having his temperature taken and blood pressure and was able to joke with the staff, which was really nice to see and good for them to see as they remember him being so poorly on arrival in November and he could not move himself up the bed by himself and was moaning and groaning at every move. Now he can run a short distance and has been dancing to Christmas music. He puts CDs on his new DVD player. He so loves that machine!!!
We also bumped into a couple of familiar parents, so we were able to say hello and follow the path their children are taking. The thing about being on the cancer ward, is that whatever race or background you are from, you all have one thing in common and that is that you have a sick child that needs a lot of support and the journey although unique to each child and family does have similarities and you can understand the stresses and strains that present you.
Harry now has a wheelchair from the RedCross, which will help when he tires easily. This will be great for walking any distance and means we can get out more, weather permitting!
So Harry has had his third lot of chemo and has just passed day 20 of his 80 day plan. He goes back into hospital on the 18th Dec so all being well if infection free he can be at home for the week. Yay!
He has his bone marrow retest for half way scheduled for 23rd Dec and will have other scans booked in just after Christmas, so we can see if the chemo is doing what it should be. Harry has certanly got a better quality of life at the moment than what he did have, so that is great. Today - Sunday, we thought Harry would have been poorly as he was, after his 2nd lot of chemo, but he has been in good spirits and not been sick, though he does have different drugs for home this time, so not sure if that has made a difference.
We went to the Victorian Fair this afternoon. It was good to get out as a family and saw some familiar faces.
So today has been a good day. The nurse came at 4.30pm to do Hary's injection, but at least all the previous paperwork is completed so only a short visit. Last week was a bit like when you bring a new born baby home and you can't do anything for profesionals visiting. Plus, Harry was really unwell. We will see how Harry fares this week. Fingers crossed he does good.
Hopefully we can get a bit of routine going and get to grips with our lives as they are at the moment. Certainly today I feel like the fog of previous weeks is lifting and there is some sunshine coming through! Although I know if Harry gets and infection and other people in our family become poorly, the path ahead could become rocky. However, we are thus far and so I'm sure we can deal with anything!

Saturday, 10 December 2011


I am writing this on my phone so it'll be short! I don't have access to a computer. Harry hasnearly completed his 3rd chemo session and can home tonight at 8pm instead of tomorrow. That's great, but we have had to work out the logistics of childcare for callum as everything was in place for Harry to come home tomorrow as previously expected discharge to be. Also the nurse has to be arranged to give Harry his injection at home tomorrow too. Anyhow all sorted and Granny and Grandad are coming to our rescue again and the ward shall have a much needed free bed!
I went on my works Christmas do last night and had a lovely time. Grandma and grandad looked after Callum and put him to bed whilst daddy stayed over in hospital. I felt a little like Cinderella in that she shall go to the ball! My work paid for the remainder of my meal having just paid the deposit and chose my food. Good choices too! Thank you. It was good to catch up with the people that went.
Now I am back at the hospital and Paul has gone to collect Callum from granny granddads. My plan was to bring Callum here to see Harry but he has been in a foul mood this am and having some almighty tantrums. I think he does not if he is coming or going. I walked him from home from town to see if he would fall asleep in the pram, but alas he nearly tipped the pram over bu leaning out of one side. I stopped at the river so he could see the ducks and he seem to calm down. Then we started walking home again. Anyway to cut a long story short he decided to walk via Granny and Granddads as that is the way he insisted on going and thus we turned up there and he soon settled down. We bumped into them I'm town and then that was it all he wanted to do was go to Granny's house. He obviously feels very safe and secure there which I'd great! Just glad Granny and Granddad don't seem to mind.

Wednesday, 7 December 2011


Harry has been in the best spirits today than he has all week. We went to the shoe shop and his feet actually have not grown since May, but since his trainers are not fit for this winter weather we have ordered a pair as I wanted brown shoes and they are not in stock. Luckily, Harry agreed to brown too. Some proper winter shoes that are water resistant and warm fabric inside. Better to keep his feet warm, even if he does not walk that far. He does get cold and has a lovely new winter hat to keep his ears and head warm. In fact Grandad Buckley liked it so much he bought a nearly identical one to it yesterday.
We have a wheelchair arriving tomorrow, so walks out in the cold wher we come, just need to warp Harry up!
Harry enjoyed bossing Granny and Grandad around at our house today and organising them to help with his Christmas card making and later playing post offices. He has been fine on a level with family, but when his friends Evie and Leo visited he seem to become withdrawn again and wanted me to sit next to him. This is hard as I know he wants to see his friends and was excited about Evie coming, but he takes time to warm up to the new situation. By the end of the visit he was proudly showing off Harry the hedgehog application on my phone to Evie. It copies what you say so they were both shouting at the phone!!!!
Harry came with me to pick Callum up from nursery which was nice and he saw the outdoor Christmas lights lit up.
It is good to keep him in contact with his nursery I feel.
Prior to shoe shopping we did have a stressful time, as Harry's NG tube had come off its sticky place on his face and we think came out of where it should be a little bit, but don't know how much. We also have to use a syringe to check the end of the tube is positioned ok, whereby we extract some of his stomach content. But we seem to struggle getting anything out, so then he has to have a drink, wait a while and then see if the drink comes out. Only a little came out and after 2 phone calls to the community nurses they seem to be satisfied with what we were describing over the phone. However, we would have prefered that they came out, but you feel over precious. To them they deal with this all daily and for us its only been a week. They are based in Hunslett - the other side of Leeds, so that does not make access easy.
It again makes me very aware of my practice as a social worker. Whereby people have telephoned concerned about their family member and request urgent respite for example, which is very hard to get hold of at times and you go through a series of questions - producing a mini assessment in your mind as to the actual urgency and often you may say well, see how so and so is tomorrow. Having quizzed the caller and got further info or referred onto a G.P. etc you often leave it for the time being unless gauged as being urgent. But Now I really can empathise with the stress the caller must be going through, even though the assessment from the professional may be that urgent help is not actually required. I feel today that I am not a nurse and how do I know really what should be what, I may be an expert in a few months, but today we did feel lost and helpless.
I think we both feel down tonight, it is very, very hard coping with all of this and keeping up appearances, when sometimes you want to shout at everybody or curl up in a corner and bawl your eyes out, not that it will do any good really.
On the positive front Harry has not had to return overnight to hospital since coming out last Wed and that we are grateful for, although perhaps the down feeling tonight is partly due to the fact Harrry has to go back into hospital tomorrow, but hopefuly for only 2 - 3 nights.
I think the discussion today with my parents as to what to do re- Christmas, meals etc, as my sister is coming up just beforehand and Harry is likely to still be groggy from previous chemo session hit home a bit. I do think positively about Harry's outcome most of the time, but interestingly when my brother-in- law is seeing his mum on Christmas day as it may be her last, I think this could be Harry's last. But then so could it be all our lasts as nobody knows what is round the corner, so we must not give that much thought, however it is still in the back of my mind!
I had previously said it does not matter what day we have Christmas on, but when planning the logistics of family, some plan has to be made re; when to have Christmas dinner. I know it all does not really matter in the grand scheme of things, but prior to Harry's diagnosis I had envisaged this large family dinner in our new home, but Harry could not cope with any of that now. Nor could I cope with organising and cooking it. Its just that you have to give yourself time to alter your mindset and plans and get used to the alternatives. When TV and magazines all hit you in the face with Christmas and planning and decorations etc. its hard not to feel a bit flat about it this year. However, in reality who really has those glossy Christmas's. I think those that portray they do, miss out the arguments about when to put the Turkey in, or which side of the family to visit or how much time to take off work, or managing the kids Christmas holidays, I'm sure the list is endless!

Tuesday, 6 December 2011


The nurse was not coming until 11am today to do Harry's injection in hes leg, so I encouraged Harry to visit nursery when we went to drop off Callum. Anna always puts on a fabulous spread of decorations and I knew these would cheer Harry up. He was greeted in the hallway with a lifesize dancing father Christmas. Anna has loads of those snow houses similar to the ones Harry admired at the garden centre. So he enjoyed seeing those and said hello to the staff and his friends, but it was a lot for him and not normal, since he is usually participating and not the visitor. He could have stayed, but he did not want to. Last night after his bath he said I want to be better and I want to go to nursery, but as he is at the moment he does not feel up to attending. I was glad he visited as it is perhaps a step closer to him spending an hour there. I think I keep forgetting that it is only 3 half weeks since we have been caught up in this whirlwind as it seems like months and we are all adjusting to our new lives and routines.
When the nurse left, we wanted to go into Otley and i did not think that Harrry would not want to come, but he did and so Grandma, Grandad, Paul and I went into Otley. Harry did not want to walk far and so sat in the pram. He was pleased to be out and about. We suggested going to Weatherspoons for lunch and initially he did not want to go, so we left the idea for a bit and eventually said shall we just look at the menu. He agreed and we did all have a meal. Harry would not eat his pasta and at one point I did think he was going to vomit! But he didn't. He did keep complaining of a tummy ache too and although he found it a lot the fact we went out for a meal was nice.
Harry then at home helped me wrap some Christmas presents and practiced his writing skills through writing some of the labels. He got excited about wrapping a couple of presents for daddy and I thought he was going to tell daddy but only in a giddy way said, 'we have a surprise for you daddy'.
We put Harry on his feed for the first time during the day today as he has not eaten much in the last 48 hours. However I am not sure if it was too much or the fact that periodically he has complained of his tummy aching today, but whilst Paul had colleagues from work round Harry vomitted, again!!!  Not pleasant, but he did seem to feel better for it and seemed in better spirits at the end of the day!
Maybe we can take him to ilkley tomorrow to get some new shoes as he is long overdue his feet being measured.
I am aware that we need to make the most of tomorrow as he will be back in for chemo on Thursday, then for the early part of next week I guess he will be very groggy again. Not sure if we have a pattern yet or not, so time will tell.


It was snowing when we set off this morning. Both boys were very excited. However, being adults we were worried it would cause havoc with our journey to LGI. We dropped Callum off at Kate's to play with Finlay for the morning until Grandma and Grandad arrived, as Paul and I were taking Harry for a kidney test in the outpatients clinic. Our first visit there, but first of many I am sure. Therefore it was good to have Paul there too, to see what the crack is.
The jouorney was ok and with Paul knowing the arera, knew which short cuts to take us on trying to avoid all the traffic! Harry was given a bed for the day. He had to have radioactive dye put in him for the test, then wait and have bloods done at intervals. I'm not really sure exactly what they were testing for, but the results partly determine how much chemo he should have on Thurs.
Inbetween the blood tests, Harry could have gone out of the hospital, however he was not keen and seeing as it was very cold it seemed pointless to push him to go out. So Paul and I took it in turns to pop out, which ment a stress free hour without dragging a child out who really did not want to go.
I met Steph for lunch which was really nice, some normality.
I think we have to lower our expectations with regarding what we class is a good day from what we did a couple of months ago. We used to be such an active family and would always be outside whenever we could, just going for walks, or to farms, or Harry on his bike. However, Harry is very reluctant to leave the house now and it takes a lot of encouragment. He has lost confidence, which is expected and likes the comfort and security of his own home. Only a couple of months ago, the thought of spending a whole day in the house would be unheard of.
We got home about 4pm and Grandma and Grandad were here with Callum. Harry was not in the best of moods, I think because he had been in hospital and because he was in pain today. He was therefore very clingy to me for the first hour or so of arriving home and because Callum had not seen me all day he too wanted my attentions. Sometimes Harry's clingyness reminds me of having a new born baby again, whereby you have this bundle that wants to be held all the time and cries when put down, however Harry is a rather large bundle now! But I do feel claustraphobic at times by Harry's wish for only my comfort and I think that is partly because he had become an independent boy, who did not like cuddles that much and would play and be busy without someone being with him alll the time.
As said Harry seemed in pain today and tea was quite fraught as I made pasta especially for him and everyone was telling him to eat it, but he did not want to touch it. Considering he ate laods yesterday, I did not think it was because he was being awkward and he then vomitted in the middle of tea, which just proved that he was not feeling well today!! Therefore not the time to be having dinner parties!!!
Hopefully he will feel better and we can go out for a little bit on Tuesday even if its just into Otley for some fresh air.

Sunday, 4 December 2011


We seem to be getting into a routine with the nurse visiting in the morning to do Harry's injection. We then went to church. Harry found it quite overwhelming and does not seem to like crowds of people any more. He would not leave me and clung to me, which is not like Harry, who used to race around the church with one or another of his friends. He was shouting that he wanted to go back to granny and grandads house, but as they were there this would not happen for a while, therefore we sneaked off into the backroom with James and Jenny, and soon several of the other children followed, so much so we had quite a crowd and with Tom setting up a tunnel with chairs it was obviously more interesting where we were - sorry Graeme!!! At least Harry was able to meet up with familiar faces he has not seen in some weeks and we did not have to retreat home. 
We had a lovely lunch at granny and grandad's they made a Sunday roast. However, Harry is obsessed with pasts at the mo and decided this was much preferable to him than roast potatoes, roast pork etc. Well more for us I thought, so he had pasta in a tomatoe sauce. They say the chemo will change his taste buds and for the moment the fact he wants to eat something is good.
Daddy and I took Callum for a walk whilst Harry had time at Granny and Grandads and he found every single puddle going becoming soaked into the bargain! He then went home with daddy and I went back to get Harry, he was turning grumpy and was complaining of pain. However, perked up on the decision to do painting and covered his hands and arms in green paint in the process. It took 2 washes including a bath to get rid of most of the green!.
Just before bath time, daddy has done a grade 3 on Harry's hair as his hair has just started to fall out a little and well he was beginning to look like a 'woolly boy'. We discussed with Harry how his hair is falling out and he became upset about this. We have had several previous discussions, but he does not seem to want to retain information about what is wrong with him or how it'll affect him. No problem, just his way of dealing with it. Anyhow, we made him feel special about his new hair do and took some pictures.
I have to admit that it does make me upset about him losing his hair and it'll be his eyebrows and eyelashes too thus affecting his identity, but as long as we can keep that cheeky smile going, we will know it is our Harry!

Saturday, 3 December 2011


Harry woke up in a much better frame of mind today. He is still very fragile and clingy to me at times, but at least he was up for visiting the Whartons Christmas fair. We all had a good morning out. Won a couple of things on the tombola, saw some familiar faces and met someone down our road, who I have actually briefly worked with. The small world it is. And even smaller,when considering that Harry and Callum met father Christmas with their friend James. It was James who concluded it was his daddy playing father Christmas, who lives down the road. So we really don't have to visit the north pole to find father christmas. Harry did latch on to the idea that Tom played father christmas and in the end I said that he is a very special friend and father christmas had entrusted him with the special job, since his reindeer was poorly and he could not make it!!!! The kids did not want to be disappointed, and what a fab job he did.
Harry did say that he thought father christmas was larger than he expected! Callum would not sit near him, but was proud of his Christmas mug that he got, so much so he would not let it go and yes it was chipped by the time we got it in the car, but Mr fix it daddy has glued the chipped bit back on, so as good as new!!!
Whilst daddy put more Christmas lights up outside, Harry and Callum played cafes upstairs and mostly got on, which is a relief.
Harry's friend James came round later to play. Harry likes to see his friends, but did seem tired and not his usual sociable self. They played for a bit, but in the end Harry found it too much, so thank you James for coming and it is important Harry sees his friends, he does appreciate it, although cannot tolerate long visits. It did amuse me earlier at the fair when we saw James and we were at the Tombola, James said to his head mistress,  'this is Harry and he has cancer!' Children are so blunt, but with it comes relief as actually they can say so easily what adults struggle to say. Then people know why he has a tube up his nose and why he has his coat on in the middle of a warm hall! Harry really feels the cold at the moment, but he is skin and bone. I looked his statistics up in my red book and his height comes in at the 98th percentile and his weight at the 50th percentile.
So Harry had a rest after James left. We did ask him if he wanted to go to the club to see his friend Isobella from nursery and her family and he really wanted to, so we agreed to go. He did seem tired as we left and I said we could stay at home, but in his mind he really wanted to go. However, once there he just wanted to sit on my lap, which is not my Harry. I admire his spirit cos he does not want to give up and that will see him through this process. We did not stay long and we were soon home and Harry tucked up in bed.
We have skipped through the X factor - not holding too much interest anymore and about to watch the third episode of Life's too short. A Ricky Gervais production. It's quite comical, but Ricky Gervais in a bottle! We are also following Rev, just before this, both on BBC2 and sky plused! The fabulous technological advances! You did not know you would get critical appraisal of programs as well as Harry's progress, in for a penny in for a pound!

Friday, 2 December 2011


Harry has had another day of being under the weather. The nurse came this morning to do his daily leg injection to boost his platelets and she also took some bloods as I wondered if Harry's blood count was down, making him feel tired. We were waiting for the call really to say that he needed to return to LGI for a blood transfusion as even the nurse thought he looked particularly pail. Callum was in nursery today, so at least we did not have to factor him into our plan initially. We knew the results would take a few hours to come through, so after lunch grasped an hour where Harry perked up a little and took daddy to see the Christmas lights at the garden center. We also bought some more lights to go outside to get into the festive spirit and daddy has been laying them outside ready for the grand turn on! Harry had a couple of reasonable hours playing cars with his friend Adam and we enjoyed the buns he and his mummy made. However, we did not hear from the hospital, so assumed all ok or at least results could wait till tomorrow, so thought we had escaped a return to LGI today, however on coming back from picking Callum up from Nursery, Harry seemed in pain and was a grumpy. tired chap. So we got him straight upstairs to put him to bed on our return, but it was not to be as he vomitted and his NG tube came out of his mouth, but not his nose, so we could not have held it in. Paul rang LGI and on their advice had to pull the tube out of his nose. I keep saying we will be nurses in our next careers when pay freezes and vacancy controls on jobs lifted!!!!
So we did not escape a trip back to LGI, as hoped, as we had to get Harry's NG tube re-fitted. This is quite traumatic and I must admit I did not relish taking Harry and tears were rolling down my cheeks as we prepared to take Harry. Callum was still asleep in the car, so on reciept of our phone call Granny and Grandad immediately came to our rescue to put Callum to bed for us. Thank you! This ment we could both take Harry and support each other. I am sure it will get easier and in actual fact the nurse who completed the task is known as the queen of NG tubes and re-fitted it very swiftly, much quicker than my experience on Sunday. Making the painful job, easier to bear.
The nursing team for children do not unfortunately offer a 24 hour service, so this means between 5pm and 8.30am we have to go to LGI for any medical support needed.
It makes me realize that it is good to have Harry at home, but it is very much compromised, by the fact that, we will have trips back and forth to LGI. However, it is better to have Harry at home as at least he is now in his own bed and Callum although put to bed by my parents will have his mummy and daddy in the morning. The Hospital did say that it is likley for Harry to spike a temperature this weekend, just on their experience of the timings of when people react to the effects of chemo treatment. So we will see and as said before tomorrow is another day!!!!!

Thursday, 1 December 2011


Well by 8.30am I think normality had set in and Callum and Harry were fighting and it continued all day, thus the thought of how long is it till bed time, frequently popped into my mind today! I was not under any illusion that being home would be easy and I was not wrong there! We had the Mcmillan nurse and another children's nurse visit this am. Harry has to have an injection in his leg for 7 out of each 10 day cycle and he hates having this done, thus I don't want to administer this, so a nurse will come in each morning and do this. We are doing the feed and administering all medication down his NG tube and for each medication you have to withdraw some of his stomach fluid using a syringe, test the ph level of this, put the medication down the tube, then flush the tube with a syringe of cooled boiling water, so a little bit of an effort.
Well the idea of having a family day did not really happen. Both boys were competing for our attentions as expected. When Harry was in hospital he had one of us to himself 24/7 and when Callum was at home he had the attentions of us or granny and grandad, or grandma and grandad, plus some other people! However, callum did not have to share his toys when at home, therefore I think that led to the big clash today. Although in normal circumstances there are always good and bad days. It was also not helped by Harry feeling very fragile, he was tired and seemed to have aches and pains today. I think not surprising after the recent chemo.
Therefore we did end up going to granny grandads, as both were requesting to go, it seemed it may help today. However, they fought there too! Paul was helping Grandad put the finishing nuts and bolts to the bunk beds recently purchased. Which do look fab.
I think I was not in good spirits and not good company, so sorry Granny and grandad.
Paul had to come home to wait in for a delivery of equipment for Harry, mainly feed stuff. The delivery was expected at 3.30pm, but in usual courier style it did not turn up till 5.30pm! Thus we could have gone out this afternoon! When it arrived there was 8 boxes of stuff. Good job Paul felt in the spirit to re arrange our kitchen cupboards to create space!
We were also waiting for some pain relief medication that was missed off Harry's prescription yesterday. Our Mcmillan nurse was kindly picking this up from LGI after a fax to the G.P. for a prescription seemed to go wrong as the wrong medication was ordered. This arrived at 7pm, so glad we have this as did give his second and last dose we were given from the hospital this eve. Not that I want to use it, as it will no doubt cause Harry to have constipation again!
I am glad we are all home, but on the other hand can't wait for Callum to be in nursery tomorrow, which I feel guilty about, but Harry is so demanding at times it will be nice just having him at home and helping him to settle back into being at home.
I also fear how much Harry's tiredness is from lack of sleep or whether he is anaemic and needs a blood transfusion, which means a trip to LGI, but only as an outpatient. I will discuss with the nurse visiting tomorrow and see how Harry is faring.
Perhaps being at home the realization that life will be very precarious for a while has hit home.
I think we need some time out, but need Harry to be in better spirits to leave, as he has been very clingy again today and would not even let granny push him in his pushchair today. We also need to follow up the possibility of a wheelchair for him, as the pushchair is just too small!
So lots of things to follow up tomorrow and as I seem to be saying frequently at the moment tomorrow is another day!!!!

Wednesday, 30 November 2011


Well I missed yesterdays blog as was too busy cleaning the house and washing, shopping etc. getting the house ready for Harry to come home tonight. Although having cleaned the floor yesterterday, Callum was busy smearing it with yoghurt this am! I have had 2 nights at home and did not come to the hospital yesterday, but I gather from Paul and my parents, that Harry had another good day yesterday.
Today Harry is grumpy and tired. Though not surprising as the amount of rehydration fluid he has to have with his chemo, ment he was having to wee every hour for the last 2 nights!
Harry does not seem convinced that he is coming home tonight. I have explained that he has to come back next week on Monday for the day for kidney tests and then next Thurs to stay. That is assuming he is fit and well in between, fingers crossed! I need to pack all his stuff up and it seems a lot despite having sent dad with 4 bags already!
Thank you to everybody who has given Harry presents over the last couple of weeks and cards too. He loves geting cards! In fact we must remember to take his cards off the wall!
The last two and a half weeks, seem to have been months, as so much has happened and so much to get our heads round. We are getting there. I am sure home will present us with a new set of trials and tribulations as we manage the feeds down the NG, manage his medications, monitor him and of course be parents to Callum too. I know Callum will be so excited to see his brother and has missed him lots.
Its 4pm and Harry has just fallen asleep. The nurse has just come and taken Harry's temperature, I held my breath as she did this just in case it was up and Harry cannot go home, but it was fine, so breathed again! Don't think I will believe that eh is home again until I see him in his bed tonight. I just hope he settles back into being at home quickly.
We certainly want to regroup as a family and see friends. Harry will love seeing his friends again, but we will have to gauge how he is each day as he will have good and bad days, but then don't we all!!
I can give Harry his advent calendar tomorrow. He has a lego one, so each day he'll get a piece of lego and callum has a big colourful one. So looking forward to that. Maybe we will start Christmas early and get a tree up! I feel like we need to grasp each good day, as you never know when an infection may present itself and that could be in the middle of Christmas, though we pray not! The first Christmas in our new home, it should be one to be marked!
Well better get packing!

Monday, 28 November 2011


Harry has had his best day in weeks today. He was riding on his car this am in his bay with me following him with his trolley of fluids. Then i asked if Harry could be unplugged for a while so I could take him out of the hospital to get some fresh air. They agreed to unplugg him at lunch time and with a lot of hestitation about going out we (me, Grandma and Grandad Buckley) managed to get him to look around the German market. He really enjoyed this and had a ride on a caroursel, of course he chose the motorbike ride! He then was mesmerised by watching the big kids on the dodgems and I think could have watched them in envy all day! We looked round a few stalls and his Grandma bought him a racing car. We went back to the hospital, but as he had missed lunch he ate half his grandads fish and chips, so that was good. When weighed today he has actually put on a little weight so that is great. He also has not been sick today either, but he has been disconnected from the feed that goes down his NG for a while. The dietician thinks a break from the feed daily may help reduce him being sick.
This afternoon my friend Katie from work visited and we did glueing and sticking in the playroom. Katie helped him make a stained glass window with tissue paper!
He was still not tired when his dad arrived and was playing with his new racing car. After tea, we spoke to the consultant and he is pleased with Harry's progress and although we have no scans of proof that the chemo is shrinking his tumour, the fact that he has been so well and pain free today illustrates that he has responded to the first blast of chemo. He was in such a state just over a week ago and the difference today is 110% Proving that medicine can be amazing!
We discussed how poorly Harry had been just after his biopsy and the consultant said if chemo had not started he would have been in trouble. He did not expand on this nor does he need to, but with the experts involved Harry has had a sharp turn around, long may it last and fingers crossed he will get home wed or thurs.
He is commencing his second chemo blast today, so will be hooked up to tubes for another 48 hours. I hope he is good spirits tomorrow too.

Sunday, 27 November 2011


I was going to start by saying I had a normal Sunday morning by going to church. But really I guess it wasn't. Partly because Harry was not with me and Callum, but mainly because I usually blurr into insignificance in church and am so busy enetertaining the boys that the only people I really talk to are the other mums, not because I am rude or don't want to get to know other people, but that is how it often pans out.
Well today was different, because the church are praying for Harry and my dad said a piece with regards Harry's progress and so everyone was aware of who I am now! It was lovely though to know that so many people are encouraging Harry to respond to his treatment and be back in church ASAP. I did wonder if I would feel mobbed, but I didn't and only felt the warmth of everyone's wishes for our family to get through this.
I then had sunday lunch with mum, dad and Callum. Callum has been up and down today and partly due to being that tantrumous age of 2, but it felt more than that. I could feel his anguish really at not knowing where he stood in relation to who is looking after him next. All Paul and I and my parents can do is try and help him feel as loved and secure as possible.
I brought Callum into hospital this afternoon and he walked like a trupper from the car park all the way to his ward with his little ruck sack on and clutching a glitter glue picture for Harry's wall. He was really pleased to see Harry, however at first Harry did not seem too impressed to see Callum as that ment sharing his toys and the attentions of visitors, Vanessa and Marie from work. However, once they both got on the cars and were driving around the bay, both were full of giggles and were getting on well.
That is until, Harry was sick and his NG tube came out. It was also time for Callum to go home. So dad packed things up and after lots of cuddles, dad and Callum went home. I find this so hard as Callum was wanting mummy to go home too. I always feel sad for a little while when our family is divided into two again, however, have to get on with it for the sake of Harry. He did fall asleep exhausted, shortly after everyone had gone home, probably leaving me with that time to think!
However after an hour of being asleep a doctor came in, not to prod Harry but to let him send 2 pods down the system. He woke up and was excited to do this. Earlier, when I was at home Harry was intrigued by the pod system and one was sent down with a note for Harry. So he helped the doctor get the pods ready and sent 2 up the shoot and saw 1 arrive. The small things, but they make such a difference and Harry was bright again. For anyone who has been to EUREKA! I am sure they have a demonstration of the pod system - it is very clever.
We took one of his cars back to the 'car park' and we needed to wipe it down as all toys have to before another child uses it to prevent the spread of germs and infections. Harry took this task very seriously and spent 30 mins wiping this car down, the wheels the undercariage, not a spot was missed. He has clearly spent far too much time watching his dad clean cars!!! However, I know who to ask in the future to clean my car and I am sure this will be a future pocket money spinner. Although perhaps not if he spends that much time doing the job!!!!
The awful bit today was having to have Harry sit on my lap whilst the NG tube was fitted again. It took 2 attempts and Harry was screaming. He also had a bad nose bleed in the process. I can not imagine what this is like for him. He is a very brave litle boy, though really has no choice.
Harry got some more cards today. He loved the card from Sam his friend at church and would not let me put it up on the wall cos he wanted to keep looking at it. He loved the rocket drawn inside and the little man in it too! He also liked his card from Everyone at Sunday school and this went to bed with him!!!
Harry has been a very lucky boy today as the people I work with have bought Harry a nintendo DS. Daddy has taken this home to work out how to use it before showing Harry tomorrow. The question is will he get it back or will Daddy keep saying he is learning how to use it - wink wink.

Saturday, 26 November 2011

controversial: to die or not to die!!!

Well a couple of glasses of wine in I can perhaps broach a topic that I dare not broach with most people most of the time!!!
I do not want my gorgeous Harry to die, I really, really do not, but sometimes I think of the enormity of the process to try and kill his neuroblastoma and I think about the impact on our family and what if we do not  survive to be a family unit at the end of this? My little Callum he has the right to access to both his parents too. But currently and for the current future we are split trying to meet the needs of both our boys.
Also if all the treatment is in vain, yes we do go there, we have both had thoughts of the inevitable, well I think most parents do. To let Harry die now, well I think social services would intervene and a best interest decision made and currently there is the option of treatment, although survival isn't the best odds compared to other cancers, but I think a best interest decision would say yes to treatment and that is the band wagon we are on.
So yes Harry is having good days, but next week he is expected to dip again. this rollercoaster is going to be with us for months. Then I read on an internet site that if Harry survives then he has a 66% chance of having problems in the future in 20 -30 years time. though by the time Hary is 20 - 30 I am sure mediacl science will have advanced yet again. Hearing loss a typical side effect then I read so is a learning disability. My beautiful, bright Harry who prior to this disease, I believe had the capabilities to do anything in life, well the consequences to treatment are not worth giving much thought to. However, they are there.
Medical science is fantastic and without it Harry would not have a hope in hell.
However, all medical science has its possible side effects. Also, what if we endure the next year of splitting ourselves in two for the cancer to come back, or as I read can come back in the form of a different cancer. well i have no idea how we would cope.
My mother met someone on the ward today whom said they were saving up for treatment in America and told her to start saving!!!! I am not sure, I do believe as said before that anything happening in the world that is a trial or in any way legitimate we would have access to.
Oh and what price would you put on your child's life? A funny statement, but what if you remortgaged and it did not work and you are left with a huge debt and trying to keep the rest of your family goimg. A dark place to go I know, but we will see what happens.
I did meet someone the other day, whom 18 month old had spent the last 8 months almost solely in hospital. It seemed the situation had been a huge strain as expected on the rest of the family.
Though to let Harry die would be a very painful process without trying the treatments on offer. It does seem that that he has improved following his initial chemo treatment.
The place we were in a week ago, was quite dark, cos although at the time none of us actually said to the other how we felt. On recent discussions we were all of the opinion that Harry was very much slipping through our fingers. Thus the chemo treatment started and with that, he has had some good days this week. He has smiled, played and been able to enjoy life a bit. He has noticed his scar on his tummy and the questions then tumble out as to what it is, how thay opened him up etc.
So, we are grateful to medical science for keeping Harry going, but at the same time scared of the consequences of the treatment and where will we be this time next year?
As said hope will be the word for 2012 and hopefully Harry will be at the Whartons schools with his friends, playing and learning as any old 5 year old should be.


Well Harry has had a happy day. He really enjoyed having El, Jenny, Michael and James to visit this am. He enjoyed still being isolated as he had the whole bay to play on the cars and even had a petrol station in the room. He had both El and Jenny chasing him with his trolley of feed and fluids. He tires easily though and enjoyed doing painting and colouring with his friends, before retiring to his bed to watch a postman pat DVD. His Granny and Grandad came this afternoon and played with him whilst mummy and daddy went out for lunch. He loved the new game sent in by Terri - thank you!
We found a quiet pub to have lunch so we could catch up, the first time in what seems like an age. We talked lots about Harry, about the road ahead, the need to cancel our centre parcs holiday, but have no idea when would be possible be an ideal time to rearrange the dates to. For those that know us we always like to know that there is some kind of break on the horizon, where we get together as a family and have quality time together. This has always been important to us and with Paul's busy work schedule and me working too, it has always set aside time for the 4 of us to do something, without cars, DIY etc getting in the way. Well I think the best idea is to get past Christmas and Harry's 80 day scan and book last minute in a window of opportunity and hope Paul can get the time off work.
Hope I think is going to be the word for 2012.
It was good to go for a meal, but having craved over the last months (even before Harry was poorly) time out the thing I think we both wanted to do was to have a saturday back, where we would go to High Royds Social Club with the boys and friends, then retire to watch the X Factor with a glass of wine. Probably because that would be normality. The things we all do and take for granted.
We did go for a walk and was in the thick of Christmas shoppers and felt like we were standing still with everyone else buzzing around us with a purpose. That's because everyone was busy into Christmas and we are not sure of what to plan. Harry should be at home and fingers crossed he will be, but we have to be aware that at the drop of a hat he could get an infection and be back in hospital. Therefore I think Christmas will be low key and easily changeable. As it does not really matter which day it is celebrated on and Callum will adjust to whatever!!! The joys of being 2!
I think I seem to feel like a led balloon alot and despite not really physically doing much, the emotional rollercoaster that we are on is very, very draining.
I am so pleased that Harry has had all his initial tests though and we can concentrate on his chemo treatment and trying to get the level of feeds right for him as he does still keep being sick. He is also losing weight. I do though feel in incredibly good hands with the team at the hospital and trust them implicitly with advising on the right course of action for Harry.
Harry had the results of his poo specimen today and it confirmed that he did not have a bug or virus, which is good. The downside is that immediately another baby was moved into his bay. He was sad about this as he did not want to share his space, as there would not be room to play. But on telling him that as he was not isolated anymore he could go on his car down the corridor he brightened up, but daddy's face dropped, knowing he would be in tow with his trolley!!!! That is as mummy was getting to go home!
Callum has had a lovely day with friends, Sarah, Richard and their liitle girl Olivia. Even Uncle Conrad popped over to say hello. Callum was full of it when I came home and his new haircut looks fab on him! a very smart little boy. Callum enjoyed reading a new book sent by friends Laura and Jim I think, about a bear and a bear star just before bed. I don't want to speak too soon as in usually these cases trouble starts, but Callum seems really settled on a night and therefore any changes to a bed will be halted as long as possible! The thought of Callum getting out of bed by himself does not bear thinking about at the mo!!!!!

Friday, 25 November 2011


Well Harry has had a good day. He has been driving his bike in his isolated bay and having me chase after him again with his trolley of drips. He's done painting this afternoon and then zonked around tea time. He has been sick again, but from talking to the consultant this is expected for the number of days post chemo treatment he is. He keeps having antisickness drugs to help him. No loose poos though.
He is off the morphine drip, which is good and on codine pain relief. Known for causing constipation, so I am sure we will end up with him being bunged up again before long.
We have spoken to the consultant today and they have all the test results through. The scan shows that Harry has neuroblastoma in all his bones apart from his skull as well as the main Tumour in his tummy thought to be attached to his adrenal gland. So one area is saved!!! That part is good as neuroblastoma could make the area round his eyes darken and make his eyes bulge, so at least even if he not very mobile he shouldn't look too different facially. Not to sound vain, but the poor chap has enough to contend with!!! He will loose his hair in a couple of weeks too. I didn't think I would be bothered about this prospect as he is not a girl with flowing locks, keen to have platted, but it will alter his identity.
In a way the cold weather that is supposed to come on being winter will mean woolly hats will be clad by most when outside.
The consultant is positive and he has a long journey ahead of him as we do too. Harry will have his poorly days, but we have to try and make the most of the good days.
As I may have said previously, no food is provided for parents staying even though we provide a good deal of care for our children. I found my bread mouldy this am and so asked Harry to order me some toast with his breakfast. He followed my request and ordered toast but added that it was for mummy! The lady making breakfast did good though and gave me some toast drenched in butter - Yum!
Tomorrow if all goes to plan Paul and I should have lunch out, not in the hospital and not a ready meal!!! Can't wait. A little normality.
Harry has his second lot of chemo on Mon and Tues next week. If he is well then he can come home Wed for a few days. I am looking forward to this but as expected also worried about how we will manage without the support of the team here. We will have a Macmillan nurse visiting as Harry has to have an injection I think it is 6 out of the 10 day cycle and I don't want to give this as he screams when it is done. We do have to learn how to manage the Ng feed system, so that will be enough to take on. Then also to monitor Harry's temperature as if it hits 38.5 we have to come straight back to the ward so he can have IV antibiotics. I also have to monitor if I think he is particularly lethergic or has a nose bleed as that could mean his blood count is low, so could mean he has to come back to the clinic for a blood transfusion. So lots to think about as well as not forgetting Callum. It will be nice to come home as be a family. I know Harry will have to get used to sharing us with Callum as he has had so much attention and one of us sleeping next to him. But it can only be a good thing not to be coming backwards and forwards to LGI even for a few days.

Thursday, 24 November 2011


Well we were finally moved to our own bay at 11.15pm last night. In fact back to the first bed we were in when we arrived on this ward on 13.11.11. The night was not as quiet as anticipated due to Harry doing more poos through the night and me the new nurse Sarah had to come to his rescue!! Well at least we were not disturbing others.
I have to say that having moved beds a couple of times already I have found myself entering the wrong room and then dawning on me that it is the wrong child there! I am only emotionally all over the place, let alone all those people I deal with in hospital in relation to my job, whom have dementia and are moved from different bays and wards several times during their stays. I really understand now how they get disorientated easily!!!
I have also a recognition on a higher level through experience, just how many different people do get involved in one persons care. The nurses, the doctors, the student doctor, more nurses, the dietician, the social worker, then the chaplain, all by 11am and all I wanted this am was to give Harry a bath. It was lunch time by the time he was a clean boy again. Then he was that tired from being prodded, talked to and bathed he fell asleep before eating his lunch!
The one thing I can so highly commend about the oncology ward though is the cleanliness. The floor is cleaner than my plates at home, I am sure. When we left the bay we were in last night a team of cleaners came to wipe down every nook and crany and even the curtains around the bay were taken down to be laundered. The fact that we were isolated as soon as strategically possible was an excellant protacol. I can't say too much as I am not sure who is reading this, but I feel if this level of detail to cleaning was only able to be delivered to every single ward in the country for what ever age group or diagnosis then I am sure infection control would be amazingly controlled!!!!
Harry has been very tired today and not interested in anything apart from watching the TV. He has also been sick a couple of times, which could be side affects to his chemo, not tolerating his feed through his NG tube or just a bug. More likley the first two though.
The down side to being isolated is that Harry is not allowed out of his room, apart from to have a bath. Therefore discussions with other parents has been minimal. Harry has been very clingy to me and I was only able to escape for 40 mins when he fell asleep and Grandma and Grandad were there. I had a look around the German market, which was a lovely diversion if only brief.
Since Callum has been in nursery the last 2 days and chicken pox is going round Paul has stayed at home with Callum this afternoon, for fear he may be in the early stages of chicken pox and spread the virus on the ward, which can be a problem. Chemo wipes out previous built up immunities and so if a child on chemo comes into contact with someone with chicken pox they need an injection to boost their immunity. Just another added complication as Callum has not had chicken pox yet, in some ways if he gets it whilst Harry is in hospital it will save separating them at a later point when Harry is home. The conundrums!
Thanks though to El who took Callum to have his hair cut today, I haven't seen the result but an amazing job! It usually takes 2 of us, one to hold his hands from hitting you and one to hold his head still! Thanks for looking after him too on your child free morning!
The other thing I was going to comment on today was the services, the people now interested cos Harry has cancer. When Harry had a 'virus' nobody wanted to know me or offer help so easily. The virus if it had been, could have gone on for weeks and I am sure I would have been told, he'll get better see how he is in a couple of weeks. I rang the Health visiting team when Harry had the 'virus' trying to find a source of support. I was told to get his nursery involved in terms of addressing my issues around him being withdrawn and generally told or it seemed to me to see how he goes. Now it seems a different story and the Health Visiting Team are getting in contact with me and seem to be there to offer support where they can. Resources are so limited that I am aware they are saved and targeted at specifics of which cancer support is one. But there are many, many people whom fall between diagnosis and are following that winding path of not knowing quite how to get the services and support needed. I am so grateful though that we are within this massive team of support on the oncology ward and the wider charity groups and support networks as we will need it all.
Tomorrow we should get the rest of Harry's test results back and I pray that they are as expected and no real surprises as to where the cancer has spread to.

Wednesday, 23 November 2011


Well home last night. Was lovely to be in my own home, own bed, own everything.
Callum woke at 8.30am which was fantastic, not sure if it was cos he was exhausted from nursery yesterday or the Piriton given to help the last red bits of his rash fade!!! Hey ho who cares, I appreciated the sleep.
Callum was in a fab mood this morning. We went to Wacky and met friends up with their little ones. Callum actually went off and played, he seems to be turning a corner socially perhaps that's because he has just turned 2! It was lovely to catch up with friends and have a chat and be out of the stuffy hospital ward. I had exchanged places with Paul who was on night duty and in charge of Harry's final scan for a few weeks. Yippee. Although results not through and we pretty much know that the results will show that Harry has neuroblastoma in several other places, the relief of the tests coming to an end is great. Harry has started to flinch when anyone unfamiliar comes to his bed for fear of being prodded or poked, or taken somewhere mysterious where he is put to sleep! Hopefully if he remians stable he can come home for a couple of days next week.
He has needed a blood transfusion today as his blood count is low. He has been busy painting today, but has become very lethargic as the afternoon has gone on. This is due to his low blood count. Low blood count is typical of his treatment plan and he will likely need many blood transfusions or platelet transfusions over the coming weeks. Which also brings me to the topic of giving blood or platelets. I have never done this enormously good deed, but has certainly made me think how fantastic it is that people do give blood. Apparently blood pools historically dip this time of year, prob cos people out chrimbo shopping amongst other reasons for people not to give up time to give blood, but without this blood Harry would be in serious trouble.
Harry has loose stools this eve, most probably due to the enormous amount of movecol and lactulous he has endured over previous days to get his bowels moving. Due to protocol his poos have to be tested in case there is an infection and these tests take 48 hours to get the results through. The silver lining to this predicament is they have to isolate us. Yey, that means a room to ourselves - peace and quiet and if results take 2 days to come through then that could mean a quiet night tomorrow too!!!!! Think I may do duty here tomorrow night too!!!!
Well will sign off for now, as have to gather belongings, whilst the staff figure who to move around to create us a bay or room to ourselves!

Tuesday, 22 November 2011

22.11.11 events

Well today started with Harry doing a poo! Yippee, he has been so constipated. However, this was not an easy task. the ward is so short staffed. he wanted to use the toilet. Good I thought, that will get him up and walking. Well, all the pipes coming out of him and the trolley they hang on had been underestimated by me! I got him up and walking, but how he or I did not trip over the wires I am not sure. having arrived at the toilet in one piece, I had to get a cardboard bowl for Harry to poo in, so they can be examined, so propping Harry up, I go and get this. Anyhow a successful trip!
Harry also decided to go on the little car again round the corridors, with me chasing him with his trolley of drips! He tired easily though and retired to bed with the notion of finishing his chocoloate buttons he started 2 days ago only to be told no! he was not able to have food until the scan 4 hours later was complete. As has happened on the several occasions this last week when denied food he starts an obsession and will chant to anyone who will listen that he wants chocolate buttons! The sedation had not entirely worked when first put under the scanner this pm and the chant for chocolate buttons continued as the capsule tightened around him. A tear trickled down my face, but when I truly thought about it would a 4 year old feel claustraphobic - i am not so sure they would have such feelings, plus his chants were of a dreamy type, then he fell well and truly asleep so that was a relief.
Anyhow with scan completed he had his chocolate bottons, plus half a bar of chocolate and half his tea. The most eaten in days. With a smiley Harry I was able to leave him confident that he was progressing, to come home and spend some time with my lovely beautiful Callum, whom is learning new words by the day. Stop it was the phrase of the night!!!!

Trials and tribulations

I shed a lot of tears in the couple of weeks prior to Harry being diagnosed, then seem to hold it together through the initial round of meetings with consultants. Whether i went into work mode, as I do attend a lot of case conferences of others I don't know, but it was Paul's turn to shed the majority of tears in disbelief. I was focusing on keeping Harry happy and interested in things. Harry's grandparents - the Buckley side brought in some little lego they had been saving for him. Harry loved this and put together several of the little vehicles brought. However on 13.12.11 when my back was turned for a minute a little voice said that I have a piece of lego stuck up my nose! Well I thought Harry was joking, but sure in enough on closer inspection he had a small piece of orange lego stuck up his nose! Well the nurses thought I was joking when told!!! We did have a surgeon on stand by, but luckily with the help of his dad some hours later, he blew the piece of lego out! His friend Daniel who visited him that day, went to school thinking Harry was in hospital because he had a pieve of lego stuck up his nose. If only life had been that simple!
On admission to LGi we were on ward 51 in a luxurious single room, with ensuite and a big TV screen on the wall. Harry was keen for me to text daddy and tell him the TV was bigger than ours at home, as he knows daddy would love a bigger TV! The ensuite was a godsend, as Harry was not able to eat anything for over 24 hours on admission and screamed when I left him, I would sneak into the ensuite to eat and drink!
However the 4 star room was not to last. On Sunday 13.11.11 we were moved to the oncology ward where we were given a bay, to ourselves, but only for one night. Then it filled up and had a baby and a 2 year old. Going to sleep hearing a baby and a 2 year old vomit due to the side effects, was not easy, but the bed was far more comfortable  than that on the previous ward. The sounds you get accustomed to are bizarre and really Harry ended up making the most noise over the next few days, as his pain following his biopsy was immense.
Well I had not anticipated on communal living again quite yet, perhaps when old and in residential care, but hey! The shared fridge, labeling everything etc. When I arrived I did not have any milk, tea or coffe, so the nicking of others stuff was very covert! I soon met someone else not prepared, with a recently diagnosed son, so willingly offered my goods!
Microwave meals here we come!
The showers are very badly designed with little slope into the drain and so I caused havoc on day 1 of being on the ward, whereby I flooded the corridor. Oh well, the glances of those clearing it up did not bother me, I had worse issues to face!
On tues 15th Nov, they had the results of a urine test which definatley diagnosed the tumour to be neuroblastoma. The plus side of this was that a drip could be removed from Harry as this was not applicable for neuroblastoma. Therefore Harry had his freedom, if only for one evening and made me have a huge smile as he negotiated the corridor of the ward on a little car, if only for 20 mins.
The next day he had his biopsy and ended up gaining nearly 3 kilos in weight in fluid. He was not in a good way Fri and his chemo started. His morphine was increased and NG tube fitted whilst I was not there. I could not face this as he would not be sedated. His dad was there, although intially said when told by Kate the nurse this would happen that they should wait till my return. She firmly said I had requested not to be there.
I went into Leeds centre on a mission to buy a new phone, as my pay and go phone was not up to the job of all the texts, phone calls needed. Bearing in mind 6 months ago I gave up on the idea of a new phone as the tarrifs, phones etc is mind blowing, I decided to buy one. My charger being dodgy for existing phone spurred me on.
However, having spent the best part of the week in hospital I was very institutionalised and was so not aware of it being Sat, Christmas, lights on in leeds etc and lost the plot! I so have such a new level of understanding of all those patients I am involved with  in hospital whom have stays of several days/weeks then go home. It is overwhelming leaving the bubble that is hospital!
Anyhow I went to the O2 shop and burst into tears when asked why I needed an upgrade. However, when told I could not get the latest version of i phone on the particular tarrif I wanted I still had my wits to leave and search elsewhere! Having gone into my third shop and in the main street of Leeds with the coca cola truck, fake snow and lights I was beginning to lose my senses to emotions of sadness that Harry could not see all this Christmas festivities and when would he be able to. I needed a coffee shop but could not find the one I thought was where it used to be. The hussle and bustle of people was too great and I sought out a police car. They were probably rolling their sleaves up thinking here is a sect 36 on our hands, but luckily Dave Hirst new my husband and our situation. Having shed a few tears i sat in the back of the police car and managed to ring my husband, discuss the potential phone deal and get myself together enough to make the purchase. Without that moment I think I would have been a heap somewhere!
Well I had left the hospital promising Harry I would return with a new phone that had a talking cat on it. so that was the mission.
Mission completed and a smiling Harry on return with talking cat, the mission was worth it!