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!

November 22 2011 continued

On 12.11.11 following the 2 ultrasounds I was in away relieved to know that I was no fussy mother, who was out of her mind with worry re: the fact that Harry was not getting better. People had told me that viruses can take a couple of months to get over, but I think in the back of my mind I knew something more was up. I remember discussing the extreme night sweats Harry was having with Paul (husband) and commenting that that was what a friend of ours had prior to being diagnosed with cancer. However, the consultants do not save you from any punches and on that Sat eve, by myself, was told that my son had a tumour on his tummy, which was almost certainly cancerous and very likley to have secondaries. hey went into detail how life changing this would all be for us and treatment wouold go on for some months blah blah. I felt numb and could not believe it. The idea of our family being split, pulled and sent through one of the most stressful periods of our lives was hard to get my head around. I thought moving house had been stressful, the agonsising months of are we moving are we not, the fact the first house sale fell through last Christmas, then in Jan resold, but it was not until May 26th the sale went through. well that would be nothing in comparison and that process nearly blew our minds, the co-ordinations, the packing etc.
However, I am very pleased to have moved as I feel the support just around the corner from us is going to be a godsend. plus my parents live at the bottom of the hill. Had our house move been successful, prior to last Christmas we would be living in Ilkley and my lovely support network of friends and family in Otley not so easily accessible. Therefore I do feel that processes happen for a reason, though would never in a million years have thought that cancer was so close on the horizon for my fit, healthy, happy, intelligent boy HARRY aged 4.
Harry was also devastated at not going to school in Sept. Being a September baby he just missed out on going to school and many of his friends from baby group and nursery have made that transition already. However, as things work out it has been the best thing that school is still several months away, thus he can nearly be at the end of his treatment when he begins school.

November 22 2011

Well my friend Claire has set up a blog for me to discuss with all, Harry's progress. This is to reduce texts, emails etc to everyone keeping you informed as I know there are many, many people who have been affected by Harry's diagnosis on 12.11.2011. We are very grateful to all those keeping Harry in their thoughts and praying for him. He has neuroblastoma cancer. He has a tumour in his tummy connected to his adrenal gland. He has almost certainly secondaries in his bones or lymph glands. Tests results are to confirm the secondaries, but his consultants are certain that this is the case and so have commenced him on chemo last Friday. He is on a high risk intensive plan of chemo which means he will have chemo every 10 days and have 7 courses, so a 70 day plan. Half way through he will be scanned to ensure the chemo is doing its job which is to shrink the tumour, then scanned again at day 80 to ensure again the tumour has shrunk. Providing it has shrunk he will have his tumour removed. Then he will have radiotherapy, then providing that is successful a 4 week blst of chemo, which will strip his immune system and he will be in an isolated room. He will require all vaccines to be redone. Then if this is successful he will undergo a 6 month plan of having vitamin A and a trial drug, which has nasty side affects, but has more chance of blsting the cancer for ever. We already know from his biopsy, which required an 8 inch incision that the make up of the tumour does not have the worst chromosone associated with this cancer, so increases his chances of responding to treatment.
However Neuroblastoma is a rare childhood cancer and there are only 80 - 100 cases in Britain a year. However, LGI is center of excellance so I believe and every effort will be made to provide the treatment and tests necessary to enable our Harry to return to the vibrant boy we all know and love. There is no post code lottery with regards treatment and drugs for children's cancer, so that is fantastic. LGi is linked to worldwide info on Neuroblastoma, so that means whatever recognised treatment or trial there are, we will have access to them.
Harry became poorly early October 2011 with aches in his legs, which then progressed to his tummy. We had 2 hospital admissions to Airedale Hospital and he was diagnosed as having a virus, which is a typical way of the beginings of this process. On 11.11.11 I was very concerned about the level of pain that Harry was in so took him back to our G.P. and with the fantastic support of Vicky McKeaver at Westgate surgery, we were sent to LGI. After 2 ultrasounds on 12.11.11 it was confirmed about the tumour.
In the week that followed 12.11.11 Harry has had 2 ultrasounds, a CT scan, biopsy - more like major surgery aws said with 8 inch incision, a port line inserted for chemo to be given, an echo, bone marrow test, NG tube fitted. In all 3 anaesthetics.
This week his tests are being rounded off by a MIBG scan, involving radioactive fluid from Germany being put into Harry and then 2 scans following to see where the Neuroblastoma has spread to. We hope to get all test results by the end of the week.
It has been a testing week and the enormity of the last week and the rollercoaster ahead is mind blowing.
My emotions have been up and down to the greatest degrees.