Tuesday, 31 January 2012

Tuesday 31.1.12

The last day of January. Christmas seems like a long time ago now. I think January always feels like the longest month ever! However, February tomorrow and that means my birthday next week, this year to be spent at LGI with Harry when he has to fast for his MBIG scan, where they fly radioactive fluid in from Germany, inject Harry with it, to make any neuroblastoma that may be in his bones glow! Obviously we are hoping for no glows as that means the cancer has gone from his bones! Harry has a bone narrow test this Friday and a kidney test, then next week tests tues, wed, thurs and then in fri 10th for an appointment with our consultant to find out if Harry can move towards having his tumour out or if he needs more chemo. Well obviously my birthday present will be the news that Harry can have his tumour out, as once put he is in remission and all further treatment are bolt Ons to secure that the neuroblastoma is blasted away forever!
If he needs more chemo then statistically overall survival rates are reduced, but statistics are only that! So we have to keep on hoping!
I have to admit the last few days have been the most difficult yet to get through and our stress levels have gone through the roof and tears never far away!
Part of the stress has not knowing what happens next, after each hospital admission so far we have had more chemo booked in, but not this time. We finally found out the plan late Monday. That is the tests described above and the date for D day being 10th feb.
Harry has been very tired and tearful over the weekend too. The ward have been extremely short staffed and not been able to answer our questions, so by Monday I was yearning to know the next steps!
I think having mum in hospital and not being able to visit her compounded everything. She was doing well sat, but then had her bandage taken off too early and her knee swelled to the size of a football, so only released from hospital Monday, as we were in the end too as the ward needed the bed!
Yesterday I think was the pinnacle of all things stressful as I attended a works meeting that ended up being of no use to me, however got the number for HR so have followed that up now. The icing on the cake though was having another car hit mine squarely on the rear, whilst I was stationary!
However, today having spent ages on the phone sorting my claim out, should all be rectified quickly!
Having visited my mum with Harry and Paul, I feel much better!
Control is something I clearly need to have, as the not knowing what is happening next is hard for me to deal with!
Harry is very tired, but has been much brighter today. This morning he was tearful and tired, but he won't relax and have a nap, but at least went to bed and chilled watching his portable DVD player!
So as tranquility is restored in the Buckley household for a bit, we can chill out a bit. Next week is going to be a very difficult week to get through due to all the tests, sedatives and anaesthetics and fastings Harry will have, but by the end of the next week, we will be enlightened to the next plan of action for Harry!

Friday, 27 January 2012

Friday 27.1.12 day 70 of chemo treatment!

So we finally made it back onto ward 76 late afternoon! Pleased as no disrespect to ward 51, but they can't do much without the say so from 76 and thus causes such delays in everything as everyone short staffed! So as I say back! Harry is in isolation again! A room to ourselves though and since the playroom is closed on a weekend, does not matter too much. Maybe he'll be out of isolation come Monday! He is definately here till Tuesday as his IV antibiotics take him till then. We will see what his bloods are like then! I now know what the importance if taking bloods are and what they can tell from them! Harry's HB has gone up to acceptable levels but he remains neutropenic and possible will now for a while, so we may be advised to keep Harry out of nursery for he will be very susceptible to infection, whilst his levels remain so low. Just as he went to nursery by himself wednesday for a bit before Granny joined him!
His temperature is still variable and his magnesium levels lower than they would like, so much so the doctors were deliberating as to whether to commence his chemo, but they have now! It's taken 24 hours nearly for agreement to be made on whether to double his magnesium medication dose, but that has now been finally agreed too. So we are rocking and rolling again!
Just need Paul's job sorted as his start date of 6th of feb, yes a week away and a new shift pattern, may be delayed due to the staffing levels on his current team! We are of course not expected to have a life and a complicated one at that at the moment! So no idea what Paul will be working from 6th feb or where!
Mum is doing well and has stood on her new kneecap today and has sticks to progress to walking with. The physics are really pleased with her, so that's fantastic!

Thursday, 26 January 2012

26.1.12 - more

I don't know why this mornings post came up as saying it was written yesterday!
Writing more as in hospital with Harry! He was in good spirits when I arrived at 4.30pm, we have started to build his Lego robot that the play team have given him and then he watched Charlotte's Webb before zonking out asleep! He is sneezing loads and has been sick 4 x today, so not a good day. His temperature has currently gone back up to 39.4 C. He's had the max calpol for today, so hope his temp does come down.
He is on antibiotics, has had a platelet transfusion and a blood transfusion, so a cocktail really.
Harry's HB counts are very low and he is neutropenic, which means he does not have many white blood cells to fight off infection at the moment. This is a side effect of his chemo drugs. His neutropenic score is very low, 0.03! His HB was 5.6 so accounts for how poorly he currently is. So praying this is a little blip and he is back on track with his final chemo of this leg ASAP!
There was no room on ward 76 so we ate on ward 51, children's medical ward. We are in fact in the exact room we started out in on 11.11.11, when the words cancer were first uttered to us! Being in the same room brings back how I felt those first couple of days of diagnosis and though only 2 1/2 months ago, seems like a lifetime ago!
Well, I left Callum with grandma and grandad this afternoon, whilst me and Paul swapped nursing duties! My mum had her knee replacement op. Today and I believe doing well!
Callum is so funny at times, he was determined to have a piece of bread even though frozen, he would not be told, so I thougt 'whatever' so my son proceeded to eat a frozen slice of bread! A while ago in the supermarket he insisted on having a frozen potatoe smiley face and ate the whole thing! Such determination! He'd be good on I'm a celebrity get me out if here, just needs to become a celebrity first, though the caliber of celebrities these days it won't take much!

Wednesday, 25 January 2012

26.1.12 such is life

Well Harry has had energy this week, but at times been very emotional and fragile, thus this is our signal that he is becoming anaemic and may need a blood transfusion. So I arrange with the ward that his bloods will be done the day before his chemo is due, so we have a clear picture of what his bloods are prior to chemo commencing. See getting the ward organised! However, events have overtaken us and Harry has spiked a temperature during the night, I rang the ward when it was going up and reached 39.1 C. They gave me the ok to give him calpol, so Paul has taken Harry down to LGI to get him assessed, but the likelyhood is that he will need IV antibiotics, which may delay his last chemotherapy treatment.
The way he was this morning was just like he was prior to commencing chemo, he could hardly walk and moaned and groaned, so likely got a virus or infection, though this time we know he has cancer already, so that's the primary illenss!!!!! Rather than being told he solely has a virus!
I had a lovely kiddifree day yesterday. I visited Craiglands Hotel in Ilkley with a friend and looked at their venue with regards a charity black tie do and have provisionally booked Friday 6th July. Yes Ilkley may not be the ideal location for those from further afield, but they had the dates I wanted, are very friendly and committed to putting on a good do, plus have some good easy to look at packages to choose between! So watch this space for further details. What we would like is a disco/band, or maybe a good Elvis impersonator, whom will charge very little, so more money can go to charity, Candlelighters will definately be one charity we choose. So if anyone knows of anyone available on the above date, do let me know. The music entertainment has to have public liability insurance and be PAK tested - that's have their electrical equipment tested within the last year to have it passed as being safe. So that may mean some entertainers are out. Though don't know how much this costs to get as may be some scope in being able to contribute to this cost, but would need to discuss. My email is s_dedman@hotmail.com.
So we await the hospital's asssessment with regards how long Harry will be in hospital.
My mum has her knee replacement operation today, so she will be in hospital too this weekend, but in Harrogate! So we will be praying that mum's op is a success and she will be chasing the boys again soon enough!
Harry has done very well to avoid an ingfection till now. He has had a cold since before Christmas, which he just can't shift. He was complaining of a sore throat last night, so not surprised he has spiked a temperature, there are so many colds and studd going around at the mo.
I spoke to our McMilllan nurse this week and she semed positive about us going to Scotland in Feb and connecting us with services up there. So we will see, we just need Harry to be back on form now!

Sunday, 22 January 2012

Sunday 22nd jan

Well Harry came home late thurs eve. I completed 2 days of training for work. The training was useful, but following the last 2 hours about the actual new way of working, think feel like a rabbit in headlights!
Whilst on the Friday training course, it was evident how I could not escape Harry stuff even there, as I had a message on my phone to ring ward 76, so did so at lunch time to be told there was medication that needed picking up. This was news as thought he'd come home equipped the night before. After speaking to Paul we pieced together that his bloods were taken again after he had his blood transfusion, but as the results were not through till Friday am it was not evident till then that he needed magnesium to increase these levels.
Anyhow, Paul was able to dash down to LGI to pick this up.
However, when about to administer his injection that eve, Harry's insuflon, like a cannula came out when he took his trousers down, therefore that ment Paul taking Harry to LGI for a second trip to get this replaced. We also realised that for a 3rd time the drug chart was missing, that's important if a nurse was to administer his injection, so Paul got a copy if this too. At least we have a car, no idea what people do without one!
The other thing Paul was discussing with the nurses on Friday was how we want to go to Scotland in feb to stay with friends and could the retests be avoided on 2 particular days, probably not is the reply and also a big query about whether we should be going so far afield with Harry. Paul had said we've done research and there is an oncology unit near to where we will be staying, but this did not satisfy them and they think harry will be poorly after his next chemo, well if he is then so be it, but currently he is fit enough to travel. So I will speak to our McMillan nurse on Monday. We were even told that our consultant may forbid us to go. We will see, anyone would think we were going to the swamps in the rain forest!
So after the intensive training course and Paul taking Harry to LGI twice a glass of wine was much needed to wind down Friday eve.
Sat was good and both boys went to a party at whacky warehouse-a soft play place and they loved it. Harry was tearing around like any other boy, though did have a couple of big bruises on his hips where he had gone on the slide. This made me wary wondering if Harry's blood count is still low as bruising is an indication. Plus the negativity of the medics, made me think maybe he is not going to bounce back so much after this last lot of chemo. We feel paranoid now!
Will prob ask community nurses to test his bloods mid week just to see.
Harry has enjoyed seeing friends today and had a good run around Otley park.
He behaviour does seem to get more erratic and he just crumbles at the slightest thing at times. But he is still able to enjoy going out and about.

Thursday, 19 January 2012

Jan 19th

Harry's home and fast asleep. Fingers crossed for a good night!

Wednesday, 18 January 2012

wednesday 18th Jan

Well, it was liberating to know that we were not tied to the room today!!!! As Harry kept telling everyone we were escaping!!! We spent the morning in the playroom and Harry did arts and crafts and had a little go on the Wii! This afternoon we went up to The Learning Zone! As Harry is not in school we are not really suppossed to be there, but when one when of their workers approached us in Nov not realising that Harry just missed out on school, I questioned why no provision was made for those of pre school age, seeing as the government made grants for it! So we were told we could access The Zone's facilities, but Harry cannot be taught! So anyway today being the first time in a while not isolated and Harry well enough to venture out and about we went to The Zone. However, after an hour on the computer, we noticed a pool of water on the floor, after closer inspection we realised it was coming from an overflowing toilet! Not to be detered from finally getting to The Zone, we carried on with our computer programme, however, when it was only inches away from us and we could no longer hear the computer's instructions due to a machine sucking the water off the floor, it seemed like a good time to make our exit!!! I do think that we were eyeballed as to having caused 'the flood' as Harry had used a toilet earlier and due to a misfire, he wet his clothes and so I had to leave him on his own for 5 mins whilst I dashed to get clean clothes from his room. However, honest gov, we used a different toilet!!!!!
Now Harry has a good memory for faces, like his dad, and as we were going down the corridor he told a man whom he said mended radiators about 'the flood'! I said how do you know he mends radiators and he said that he came and fixed his in his room one day, but I was out shopping!!! Probably runing around picking things up to resemble some effort had gone into Christmas!!!!
Harry has been in really good spirits and very chatty as my friend whom visited us this afternoon observed. Yes the boy whom at age 2, I wondered if he would have a speech problem, won't stop asking the why, where, how questions!!!! One question always leads onto another. The other day it was about breaks and how they work and where are they connected to in the engine and then what powers the engine, then what powers bicycles and then what wheeled drive are they!!!!!!
So I am at home and Paul is now at the hospital, Hary is due to finish this treatment and transfusion between 9 and 10 pm tomorrow! I am going on a training course tomorrow, so it'll be interesting how many braincells I have left to contemplate new ways of working within our team!!!! If I remember my team from having last worked in October - only joking guys!!!!!
Oh I have ommitted i think to say that Harry has gained a pound in weight, this is magnificent and his dietition is very pleased. This does not mean bye bye to the NG tube though as his weight will fluctuate so she says, but we will see, maybe it won't too!!!!!!
On a sad note, having got out of isolation and been able to speak to parents, I met a family with a son whom has Neuroblastoma too, however not great circumstances to meet them as their boy was about to have an MRI scan. He has been through all the chemo Harry has, as well as radiotherapy, high dose chemo and stem cell therapy, but he has a lump in his leg now, so has to have all retests again to find out the exact position of play and have more chemo. I guess that is why our consultant is never too optimistic with us as it is a long road, but hopefully we will reach Cansus City and the tin man will have a heart!!!!

Tuesday, 17 January 2012

Tuesday 17th jan

Well decided that i needed to take a chill pill re when Harry goes in for his chemo, so had a leisurely start to the day and dropped Callum at nursery for ten. Harry wanted to say hello to everyone so we ended up staying for snack there too. Having found out there still wasn't a bed at 11am we did some shopping and visited the library and headed home for lunch. Eventually a bed became available and we hit ward 76 for 3.30. However, we had to wait for his bloods to be done and results through before chemo could start, why we hadn't been sent to the day unit earlier for them to do that I don't know. So Harry's chemo started about 7, which means, so I thought discharge would be 48 hours later, not so as Harry's HB is 6.8, which is low and so he needs a blood transfusion tagged on the end! So maybe he'll land in his own bed before midnight thurs!
The transfusion could have been under way if we had gone to the day unit, however not to be! At least he got a bed!
Harry has his own room, but not isolated as far as I know so at least he should get out into the playroom today. We went out for a walk on the corridors this eve, mainly to get my car parking permit from reception, but I also realised that I'd forgotten Harry's tigger and when I admitted this to him his face crumpled so we headed to A and E to ask a favour to have one of their free ones that the Freemasons donate. I know this as we have 3 bears already from
Previous hospital visits! They were very kind and this has succeeded in aiding Harry to get to sleep!
However, what has not helped is that Harry has started chemo late and for the initial phase involves chopping and changing bags of drugs, which also involves lots of beeping of his machine just before they end. This has made Harry unsettled! I am assured that by 12.30am his drugs will stay the same all night. So here's hoping!

Monday, 16 January 2012

monday 16th jan

Well, we have had a good weekend seeing old friends and their little ones. It was good to catch up. Sunday was rounded off by a children's party which Harry and Callum went to and Paul and myself got out for a curry with Mike and Dee. So after Friday's disappointment we have had some normality and fun!
Today we went to wacky warehouse for toddler special price time! Harry enjoyed going down the big slide, he seems to have overcome his fear of slides, which he seem to have until only a few months ago. Harry fractured his leg on a slide just prior to being 2, although young was never sure if this was linked?
Anyhow, no stopping him now, which is lovely.
We took Harry and Callum to Ilkley this afternoon for a short trip out in the cold, both boys went on their bikes, Callum is getting the hang of his balance bike, but loved it best when daddy pushed him with his feet up so he could go really fast!
Harry should be in hospital tomorrow, so as usual rang up this eve to see what time we are due in, to find out currently there are no spare beds! I had just spent a while explaining to Harry the plan of who was looking after him the next few days before bed and now maybe his chemo will be delayed! I have to ring tomorrow after the ward round to find out if anyone is fit enough to vacate a bed and if not his chemo will be delayed.
Friday when we visited to have his NG tube re fitted the ward had a lot of empty beds, but the nature of the beast is that children pick up infections and then need to be hospitalised to have Iv antibiotics, which last around 5 days, so the bed status can fluctuate dramatically. Must be a bed manager's nightmare!
So if Harry's chemo is delayed this will be a blow, as I have planned Callum's childcare and I am attending a training course at work thurs and Friday. It'll also cause a knock on effect for his final treatment on 27th, which is a Friday, when Callum is in nursery, so will prob be over the weekend he is admitted instead, when the playroom is shut and Callum has  no nursery.
I should chill out about it as nothing I can do and it's not life threatening, just annoying!

Friday, 13 January 2012

Friday 13th Jan: Whitby

Well, I have been passed as able to administer Harry's GCSF injection into his insuflon, similar to a canula in his thigh. Therefore, with Paul off work today and the forecast being good, we decided for the first time since Harry was diagnosed in Novemember to take a trip further than an hour away from home or LGI. We told the boys that we would take a trip to the seaside and they were so giddy, which made us giddy and it was so lovely to feel the freedom of having a normal day out!
We arrived at lunch time and decided to go straight to a simple, but good fish and chip restaurant near the railway station. I was just sitting back feeling really pleased at how civilsed the meal had been and how well both boys had eaten, particularly Harry. However, these thoughts were put on hold as Harry started to vomit into Paul's hands and his empty plate, at first it was just his juice making a return journey, so I thought that's ok NG still in place, but his fish and chips also made a return journey, the fish obviously determined to make it back to sea, however, it was these lumps that made his NG tube come out of his tummy and hang out of his mouth in the middle of this restaurant like a 'lizards tongue!' yes NICE!
So, there was no discreet about it, the tube had to come out and with that out ,Harry had a few tears. I think we could all have had a few tears, however it was not the moment for that!
At least we had finished our meal and having cleaned up and all gone to the toilet we left. The staff were really lovely about it. Again we caused a public spectacle, but hey ho! Last time it was Callum having a tantrum in Boots the chemist!
We decided to carry on with our day and either later see if Whitby had the facilities to replace the NG or a trip to LGI would round the day off.
So with the giddy excitement having returned, we headed for the sea front and stopped at the arcades on the way, to fritter some 2ps away on the slot machines. The boys enjoy this and winning a few pennies adds to the excitement, however, 2ps is as far as it goes!
We headed to see the sea, however, the day had turned, what had happened to that sunshine promised on the BBC website forecast, and with the change a little drizzle!!! Well we headed to the whale bone arch at the cliff tops side of Whitby. I was determined to get a photo of our family, but the wind was in Harry's face and Callum is just so against having his photo taken, that it was not to be a family photo! At the top I played chase with Callum for a bit, but we then acknowledged that actually it really was too windy and cold to walk along the front and headed into town.
We found out that Whitby only had a minor injuries unit and did not have the experience to re fit an NG tube, so LGI it had to be. So straight down the A64 we went, it was 4pm when we left Whitby, but luckily we were heading against the traffic flow and by 5.45pm we were sitting on the sofa on ward 76! Not bad really!
Harry had his tube refitted, with some screams, which Paul could hear down the corridor, but nothing like on previous occasions!
So we were home for 7pm ish. So could have been worse!
I had only been saying to a friend yesterday how well we were doing with the NG tube and when Harry was last in hospital we were actually discussing when the NG tube needed to be changed and a discussion was had on whether it could be changed when he has one of his anaesthetics for all his retests in Feb. C'est La Vie - too much planning ahead.
I had not twigged it was Friday the 13th until this eve! However, I don't really believe in superstition. Harry has had a good run with the NG tube, it just had to come out on the only family day out since we went to Blackpool for the day on Nov 6th just after Callum's birthday. However, the difference in Harry's physical ability now is amazing due to his chemo treatment. Then he was in a pushchair and could hardly walk and I remember one man saying as we passed that he should be walking. If I could find that man now and tell him my son has cancer. Though really he could see Callum aged 2 was walking, so a silly thing to say. That comment made me think how judgemental we can ALL be, including myself, as behind every person and every situation there is a story, but most people do not want to hear the story, but just make comments!
I know my mum will hate me for mentioning this, but it seems like her cartilidge in her knee has gone and is in great pain when walking and awaiting a doctors appointment. Her knees are a long standing issue, though thought reasonable mended following operations about 30 years ago and years of physiotherapy etc. This is a huge blow to my mum, whom has been a godsend to us all in helping with childcare with the boys as is my dad and the adoration is in equal amounts between Granny and Grandad and the boys! So we can only pray that this can be sorted and Granny can be up to the boys fast pace ASAP.

Tuesday, 10 January 2012

Tuesday 10.1.12

Well Harry was not sick last night, which was great and seemed zonked to the world all night. The long day and cocktail of chemo drugs and platelets must have really made him tired!
He has been to nursery again today for a couple of hours with granny and the covert operation continues of getting Harry and Granny into Escroft without Callum knowing. I do feel a bit mean, as Callum this morning really wanted Harry to join him at nursery! I am hoping that maybe we can aim for Harry going by himself just for the morning on Fri, then I'll brink both boys home, but we will see.
I am very proud though that Harry is going to nursery again. I am very keen to promote him joining in with activities with other children his own age, as he does spend a lot of time in adult company in hospital and I want to ensure his social skills remain for school.
I feel that I have had a wobble really and hospital does not help as you have far too much time to think, dwell etc, it is not healthy as my usual life means that you don't have time to 'fart!' let alone ponder on life too much!!!!! This can be good, but I also feel the rat race is not ideal either and I was aware that I was in this rat race. Although working is important to me.
I felt near the end of each of my maternity leaves that with too much time, one can start to obsess about the unimportant! Therefore working gives a focus about something entirely different and makes me feel like I am contributing to society. Therefore, as I am currently on sick leave, and with having this time in hospital with Harry where time passes at a different rate, I have time to indulge on thoughts that would usually be suppressed due to not having the time to do so!!!! If you get my meaning. Perhaps all a bit deep!
Whilst in hospital with Harry though, we do, do all sorts as said previously and from making lego models, to making puppets, to doing some writing and learning Harry is fulfilled. He is getting very familiar with some of the nurses and I can get a gauge of who is better than others and there seems to be this 'A' team, whom were on, on Monday, an excellant 'watch' whom provide fabulous care and talk to you if needed about Neuroblastoma. I guess the 2 nurses on Monday have been there years and so have gained a lot of knowledge.
There have been some developments in the last decade with treating Neuroblastoma, the GCSF injection has been added in recent years and this has had a big part to play in keeping Harry healthy and infection free during this chemo treatment, as I think it boosts his white blood cells that enable him to fight infection. However, I am not a scientist but more a sociologist, so I do not have the mind to take the information in, accept that they enable Harry to keep out of hospital inbetween chemo treatments.
However, there has not been the developments with fighting Neuroblastoma as there have been with other cancers. I am not sure if this is because Neuroblastoma is more rare or because it is a hard one to treat. I know the Neuroblastoma Society is trying to do research and further developments on treatment.
Sometimes reading is good, but sometimes it heightens your fears for the future for Harry. Being realistic too is good, but I don't want it to nudge my positivity.
I think also we are a month away from being near the end of Harry's retests and this will be a nail biting time. I do not want to ponder too much on that point and therefore will try and administer Harry's GCSF injection between me and Paul. We are having training, so we have the ability to take off for the day. The injection comes 7 out of every 10 days during this chemo treatment, but will be used for 10 days prior to his stem cell collection and again during radiotherapy and so, we realise this is going to go on. Therefore we don't want to be tied to waiting for nurses to do these injections, but try and make the most of good weather days, like we always have.

Monday, 9 January 2012


Harry arrived home at 6.30pm from
His 6th chemo treatment. He had had his first platelet transfusion today, which are taken again from donars, whom we are immensely grateful for. Harry has been in good spirits. He had grandma and Grandad visit today and me and Paul
Swapped over, so I could go home and look after Callum. Our friend had taken Callum with Finlay to an indoor play place whilst we swapped over. Callum
Enjoyed his outing out.
He was very pleased to see Harry when he was home and he very appropriately says I love you Harry or I love you mummy which is lovely!
Despite it not being 'normal' spending so much time with Harry whilst he us in hospital, I think it has made a very close bond between him and me and his dad and himself. It is so lovely to hear from Harry saying in the middle of the night when up with him to hear him say unptompted 'I love you mummy!'. We are a very loving family but it is good to hear all the same!
Well all 4 of us are back under one roof and that is good. Harry is back in hospital 17th jan.

Saturday, 7 January 2012

Saturday 7th jan 2012

Well I had a really good discussion with the McMillan nurse yesterday. 2 hours actually. Julie is so warm and lovely and does not make you feel silly about any of your thoughts and feelings either! Paul managed to join us for half an hour to get the results of the bone marrow test.
Well he has still got cancerous cells in his bone marrow, but at a reduced amount. That is ok apparently and on course for the bone marrow to be clear when tested in another 40 days. So we will positive about that. Certainly Harry's presentation illustrates quality of life and we are trying to make the most of this in between hospital visits.
The dreadful wind and rain abated yesterday enough for Harry and his friends to get their bikes out and cycle around the tarn near the airport. It's not far, but Harry was playing at races with Adam and Georgia and it was delightful to see him having so much fun.
In fact Friday was a success, he managed nursery in the am for 2 hours and with granny's help has caught up on a lot of work sheets he has missed over recent weeks. The trip in and out went unnoticed by Callum, so granny may be awarded spy status for being covert and sutble!
I did feel a bit mean for leaving Callum in nursery, but he does enjoy it and with Harry having lunch at granny and grandad's and Paul at work I actually got a couple of hours to myself and instead of racing around doing washing etc I had a cup of tea and started to read a book! Not read a book in a very long time! It was actually one I have just purchased when trying to seek out books on childhood cancer. I ordered this one not even knowing that the boy in question had neuroblastoma, he was diagnosed aged 4 very similar to Harry, but it had spread to his skull and diagnosis was in 1998. His name was rocky redman and in fact was treated at LGI same as Harry and by some of the same nurses - mark and Neil are 2 I have so far recognised as still being here and jolly, who is a big part of ward 76, but not a nurse.
Anyhow, unfortunately despite a big fight Rocky died aged 7. Currently there has been an accepted trial since Rocky's treatment and Harry will get additional drugs after his period of isolation to fight the cancerous cells remaining good and proper! We hope and pray for that!
So, why read the book? Well it is a journey that has been set out in a very well written way by Stephen Redman, the book is called 'at least it is not raining' and I can identify with a lot of it, well half way through! However, where I am at, at the moment, I can only describe as similar to a mum with a new born baby, seeking a network of support and advice on coping and of others experiences. No babies are the same as are no neuroblastoma cases, but it is about for me, seeking those that understand what you are going through.
Rambling now, but it feels at times a bit like talking to someone with no
Children about your 2 year olds tantrums. They will look at you, make some noises, but not have a clue what you are on about! I am exaggerating a bit as we have some lovely friends trying to support us, but only those that have been through this can identify how being in and out of hospital feels. Living out of a suitcase and on a camp bed. The mind blowing logistics of enabling Paul to attend work, have Callum looked after, me in hospital with Harry, then some switching over to enable me to come home to take Callum to a birthday party as I want quality time with him too!
In fact Callum was a joy to look after this ami am told by jenny. I am glad. I do give callum some bad press at times, but when he wants to be, he can be the loveliest, smiley, cheeky and most polite boy imaginable. He just usually saves this for others!
I had to smile last night though as the whole getting him into bed seems to be becoming a battle of wills! He was supposed to be following me into his bedroom for one last very final story. I heard him say I'm going downstairs. I sat in his room and I could see him hovering on the top step deliberating about whether to follow through. I said, 'what are you doing Callum' he replied, 'I'm being naughty!' with the biggest grin on his face! he knows how to press all the wrong buttons! But it made me want to laugh, but had to suppress it as it would have sent all the wrong signals!
So, to end an epic blog Harry has had a good week. He had a fab day wednesday too when he spent all day playing very well with 'big' Adam from Scotland. They were very content playing Lego. Bodes well for the future. I remember having some great times with family friends. In particular, Alex and Nicky and from another family Rebecca, Vicky and Jenny. Us children got on famously allowing our parents time to chat and have fun too. I can just begin to see those times ahead!
Also to end with - some great actual evidence that chemo is working and reducing the cancerous cells in his body.

Thursday, 5 January 2012

Thursday 5.1.12

Well we still have not heard the result of the bone marrow test and despite originally feeling like did not matter it has suddenly turned into a big thing and a big wait! If the result is good then Harry still needs to get rid of the cancer in his bones, which only the scan in feb. will show. I think up until now the path has been about Harry starting treatment, just managing the initial process and coming to terms with our current situation. However,now we are half way and tests are being redone I am now getting agitated about the results and if we can move forward I.e the tumour can come out. Today has been a blip in particular for me and tears have not been far away. I guess knowing about theories on transitions and dealing with change then it is normal to go backwards and forwards on acceptance of a situation and going backwards to not denial cos that is not so, but I think feelings of grief best describe it.
I did contact the McMillan nurse who is fab and coming to talk to us tomorrow.
Harry is doing so well and even went to nursery for a couple of hours today with his granny. This is fantastic and also good for his friends to see him too. He is going to go again tomorrow for a couple of hours,but has to be a masterminded plan so as to covertly get Harry and granny in without Callum seeing otherwise he will want to join them and then come home with them! So a bit like 007 I think I will see if they can park round the back and go in the back entrance and afterwards they will have to exit at lightning speed!
I think seeing Harry so well makes it hard in away, which will sound strange! I think that we see we have Harry back, which makes it harder to think we could lose him. In a way it feels like "bullseye" where the catch phrase was and look at what you could have won! Usually a speed boat where the couple lived no where near the sea!
Anyhow, as said we are in the middle of his treatment and so we feel very vulnerable as to whether he will meet his milestones as hoped. He is well, though as we speak this is the second time he has awoken tonight! So wondering if his blood count is dropping again as he seems to get unsettled at night when this happens or it could just be his cold. He's back in hospital sat anyhow for more chemo.
Well Callum continues to be a typical 2 year old and showed a good chunk of Otley this by having an almighty tantrum in boots the chemist! Everyone had eyes on us, glad we could produce some entertainment! It was all because I would not let callum run around with the tooth brush he had unpackaged hang out of his mouth! I was about to pay and he ran off tooth brush in his mouth, I dragged him back and pinned him between my legs, whilst paying. Then he would not get out of the store! He thrashed around the floor and it was all I could do to stop him hitting his head on the shelves! Paul was having his hair cut and afterwards came into boots to see if we were there. Oh yes. He heard us before he saw us! Me knelt on the floor struggling with Callum with all eyes on us. All because of a bloody tooth brush!
Oh well, we all survive for another day!

Tuesday, 3 January 2012


Well Harry was due back in hospital for his hearing test and kidney test today.
Since chemotherapy can have affects on hearing, his is checked at regular intervals. The result was that chemotherapy has not had any affect on his hearing. It tends to be the higher sounds that are affected. Harry does in fact have a slight issue with low sounds, which was detected on his hearing test at the start of treatment. Slightly worse in his left ear. This is no doubt due to having several perforated ear drums as a baby due to acute ear infections. This is only a slight problem, so no cause for concerns. Some children do show signs of hearing impairment from chemo treatment at this stage, so we are glad that Harry remains ok.
He has had a kidney test too, to ensure these are functioning ok. We await the results of bloods taken at 2 intervals. His kidneys can also be affected by chemotherapy treatment. He seems ok from our point of view so fingers crossed.
We saw the consultant, but she does not have the bone marrow test results, so that is somewhat dissapointing. But we will be telephoned with the result if they have it later this week. Its all the bank holidays, as nice as they are, they hold up the process!!!!
However, she gave more information with regards the tumour. Now Paul has gone off with the actual sizes, but it goes as near to this:
On the initial ultrasound and scan results it showed the tumour being 6 x 8 x 12 cm so about 600cubic cms!
Now it is about 4 x 4 x 8 cm so just over 100 cubic cms! Each figure was point something - but near enough.
Also part of the tumour has calcified, has become like white powder! So parts are dead. So chemo can be compared to Narnia, where the white witch turns people to stone!!! However, this is good magic!
So this is fantastic, however, the consultant never to be over optimistic as despite this great piece of information, the cancer has to go from the bones, prior to the tumour being able to be removed. If it is not gone from the bones, then more chemo is needed. It can be the case that it is still there at this stage, but gone early Feb when the 80 day retests go on.
So we hold our breath for a bit longer, for the great news, or if it is not as we want at this stage the courage to stay postive as the journey has only just begun and there is more chemo for Harry to have before any decisions are made, with regards the tumour coming out or not!
All we know is that Harry is well at this stage so the chemo is doing its job and with regards the tumour decreasing in size we have some proof now too!

Sunday, 1 January 2012


Well a new year!!! What that exactly means I am not always sure, as you feel the same as the day before. A bit like a birthday! You don't change overnight, nor do circumstances, but I guess it is the chance to put events behind you and focus on a blank canvas!
For us Paul has a new job to look forward to, an area he has tried twice before to get into, so it goes to show that persistance and increased experience helps seal what you want in the end!!!
For Harry, he needs to keep his battle up against cancer, so that he can start school in september with the best part of his treatment over and done with, so that he can learn and become whatever he wants to be - a builder at the moment!!!
For Callum, he will make the transition from 2 - 3 later in the year and these are very important developmental months as his speech will come on in leaps and bounds and he will become potty trained!!!! A giant leap and a money saver in nappies!!! Perhaps we will leave that till Spring though!
For me, I want to get back to work in some shape or form and hope my meeting with health and wellbeing later this month will enable me to have the flexibility I need and the technological support in terms of  a lap top or ability to work from home in parts, we will see what can be achieved!
As said before hope and positivity are all important for us in 2012.

Harry did sleep really well last night and wasn't sick, so fingers crossed for tonight.
We have enjoyed catching up with some friends over the last few days and having some normality. It has been the first chance in ages to see people. Our friends from Scotland popped in for lunch on Sat, and this is the first meal I have cooked for friends in a while. The thought of doing this up until now has been too much, as Harry would not let me get on with anything, without being stuck to me like glue and he was too weak to stand up at the cooker with me. So the leap he has made over the last 3 weeks has been remarkable!
We have some other friends from Scotland visiting mid week and Harry will be able to enjoy their company and play lego with Adam!
Harry can get fragile and demanding at times. He does expect us to jump to what he wants when he wants it. I think this stems from him being in hospital and having either myself or Paul to himself and having that undivided attention. When in hospital their is no cleaning, cooking or Callum to attend to, so a morning can be devoted to entertaining Harry, but when at home, obviously the situation is different and all the other factors of home life come into play. We are trying hard to keep Harry grounded and understand that life does not always revolve round him. At age 4, I guess it is hard for him to understand this, but what we do want is to keep Harry aware of others and to share and be a person people want to be around!
Harry did touch me when on the way to Paul's parents the other day in the car, he noticed that I was wearing the earings he bought me for Christmas. He was really excited to see me wearing them and also said, 'mummy you are beautiful.' He will often come out with such statements like, that's a really nice top you are wearing or you look lovely today! I keep telling him that comments like this will win him all the ladies over!!!!

Since Harry's diagnosis I have also become aware of how many charities there are involved with Cancer. At LGI there are play staff funded by Candlelighters. These staff are really friendly people and make a huge difference to the experience that each child has whilst in hospital. They make an effort to talk to each child and find out their interests and entice them into play, so as to help them on their journey of recovery. When Harry has had his periods of isolation, they make sure that each child has some individual time from them, when they cannot not access the playroom. During his stays Harry has been painting, made a short film, done pottery, played on a Wii, DS, playstation, glued and stuck to make a stained glass window or Christmas decorations, so the experience of hospital is not all bad! Some of Paul's colleagues raised money for some toys for the playroom, which was fantastic. Thank you.
I would also like to thank Paul's colleagues for raising some money to buy our boys some toys too, which they will get hours of pleasure playing with. I love playmobil too, so I will also enjoy playing with them - a big kid at heart!!!!