Saturday, 25 February 2012

25th feb - continued!

Sadly, though the sun shone, not in our household! Harry has not been well today and spiked a temperature of 39.1 this afternoon. Thus resulting in being in LGI again!3rd weekend in a row! Harry has commenced on antibiotics and will be here for a few days.
My evening was brightened by my friend visiting and we shared a bottle of wine in Plastic glasses and hid the bottle. Not sure what protocol of having alcohol on the ward is, but felt like 16 again!

Sat 25.2.12

Seem to have had a busy week.
Harry was discharged home on Sunday early evening. On monday Sarah and Olivia visited from Huddersfield. It was lovely to see friends. Callum and Harry had a lot of sibling rivalry due to having one parents individual attention whilst Harry was in hospital and having toys solely to them! Though obviously some rivalry is natural!
On Tuesday the boys were playing lovely with their garage so we dropped Callum off late to nursery. Harry is neutropenic so can't go to nursery as too susceptible to infection. He did enjoy saying hello to his friends and teachers in the tennis court briefly. Maybe next week he can go if his levels increase.
Having dropped Callum off we went to Grassington and Kettlewell with Harry for a couple of hours. It was lovely to get out of the house and we love the Yorkshire Dales. We always feel away from it all there. Harry enjoyed the outing, though tires easily and had a good sleep in the car. It was nice to concentrate on Harry and Callum went into nursery lovely do we knew he was happy there.
At the moment it's easier dealing with one child at once, particularly as we are emotionally worn out and lack of sleep from being in hospital with Harry contributes to our fatigue.
So as the week has gone on Harry seemed to dip. He was good meeting family on Wednesday afternoon and was as giddy as the next child. But that night had a very restless night. Thurs am he was very agitated too, usually a sign that his blood scores are dropping, though after a short lay down was on top form when the nurse arrived! As all children are, like when you arrange a doctors appt.!
However, after another restless night I knew Harry's bloods needed checking, so took him to LGI. Sure enough his platelet and Haemaglobin scores had dropped to levels where he needed a transfusion to boost both scores! Therefore we spent the whole day at LGI and arrived home at 8.30 pm.
Hopefully this will boost Harry for the weekend. Though last night he was restless again and probably due to him being neutropenic. His temperature was hovering around 37. Something which, in general children is ok. Harry's usual temperature is 36. Something, so we just hope something isn't brewing. As the goal is to keep Harry out of hospital. Being neutropenic means he is at high risk of getting an infection. Hence mainly being antisocial this week!
So when the time table is one week in hospital and 2 weeks at home, due to Harry's treatment and impact on him, the LGI is never off our agenda for long, though day visits we can cope with! In fact yesterday Harry was asked to pose in a photo for an IKEA promotion, to advertise their support of Candlelighters. To which Harry was agreeable to do, as he was told he could have one of the cuddly toys that IKEA were donating! So look out for Harry with a cheesy grin in the Yorkshire post! Never to miss an opportunity myself i asked the marketing guy for a raffle prize for the charity ball I and friends are organising! All being well we will get one via the Candlelighters organiser!
So yesterday, whilst at LGI, Harry and I also made an industrious team as we labelled some envelopes for Candlelighters ready for their newsletter to go out, though spent some time doing it, but still left an enormous amount of labels left to be attached!
So here we are in Sarurday 25th.
Hopefully we will have a good weekend and have plans to see some friends of Harry's. The sun is shining so fingers crossed no infections please!

Ps charity ball 6th July at The Craiglands hotel in Ilkley.
Yes it is booked! Entertainment will be Elvis - yes for one night only he is making a comeback! Just for us.
We also have a live band called Soft Touch that play a variety of covers old and very new and a DJ. So lots of entertainment.
Tickets will be £35 per person and tickets are currently under construction, so watch this space when ready to purchase!

Friday, 17 February 2012

17.2.12 neuroblastoma-thd harsh realities

Well a week of emotions it has been. It has been hard to deal with Harry's results. Statistics are only that - a guideline of what to expect. But a guideline that cannot be totally ignored and one hard to push out of the mind and to remain positive!
Basically Harry's bone marrow is not clear. This statistically means if he can get it clear and move through the remaining stages of treatment that his chances of relapse are higher and therefore less likely to make it 5 years post treatment.
Harry is the first child in a while not to get his bone marrow clear in the initial phase of treatment. However, this fact is meaningless in a way, as we know of one little boy already who got his bone marrow clear in the initial stage of treatment, but has relapsed before all the stages of treatment are complete.
The scary thing is that once a child relapses with Neuroblastoma cancer only palliative treatment can be given. Yes, the cancer could be kept at bay for some time, but if that is ever the case with Harry, we know he will never grow up and be all the things he talks about being, although he is very definate that he does not want to be a doctor or nurse.
Harry has nearly completed his first round of chemo, which involves 7 days of chemo. 4 as an outpatient concluding with 2 1/2 days in hospital. Then he has 2 weeks at home, or so we hope without him spiking a temperature or his bloods dropping to levels where transfusions are needed. Then he starts the 7 days chemo again and another 2 weeks at home prior to all the retests. If his bone marrow is still not clear he can repeat this 6 week process again.
If his bone marrow is not clear then, well it will likely be palliative care only as the option.
So we are praying that this new chemo can have the necessary improvements needed in clearing Harry's cancer cells, to the point that he can move into the next stage of treatment.
Both Paul and I have been very tearful. It is hard to remain positive, although we need to. Thoughts of funeral planning do indeed cross your mind. Our hopes and dreams and adventures for our fabulous Harry, possible thwarted by this very aggressive cancer. We do not know.
We hope of course that Harry gets through this treatment, if he manages that, the battle is for it not to come back. It all seems such a rocky path at times, and yes we do stumble into the cracks at times and get overshadowed by the darkness and the sun can seem a long, long, long way away!
However, we have to value Harry as he is this week, which is very well. He was discharged home on Monday eve, to be back in tues am for a dentist appointment and chemo as an outpatient. He has remained at home until fri am, where we are back on ward 76 until Sunday.
I was with Harry on Monday and hospital wasn't so bad. At the weekend we gave Harry his playmobil Boat, which Paul's work had given him at Christmas, but we saved for a carrot during his big test week. It has been a big hit! He has had several long hour baths with it, until the water is cold and he is wrinkly. He had a bath with it last Monday. He then saw Dave the animation guy for over an hour. He used his boat and another one from the ward to create a crash scene whereby people go overboard and a baddy is shot! hmmmm I'm sure you are thinking! Yes not sure where he gets these scenarios from as Ben and holly does not have guns, just fairy wands!!
Anyhow, Harry has to take lots of frames of his boats as he moves them carefully. An hour play gives about 30 seconds of film, but worth it to see Harry concentrating so hard and enjoying the process as much as the end result. Candle lighters pay for the animation chap and is a great activity for Harry to engage with, particularly also as he is not gaining experiences through nursery at the moment.
Harry also loves exploring the corridors of the hospital and we have spent many a time doing this and last Monday afternoon was no exception. We met daddy and Callum on the corridor coming to visit us. We all went for a walk and Harry was keen to take Callum's hand and show him the way. Callum loved this as he was so excited to see Harry. We went to Harry's room, where normality was soon restored and the boys were fighting over the playmobil boats! We quickly remembered why visits with Callum can only be short ones! Though this visit ended with the consultant announcing Harry could go home as the bloods cultured following his spiked temperature grew nothing. How long would it take to pack Bob said, and we hastily git everything in the car to try and avoid rush hour traffic!
Harry has been well this week and has enjoyed playing with his toys and a couple of visits to granny and Grandads and a visit to see grandma on thurs afternoon, following his chemo. Daddy was in charge on thurs, so I took the opportunity to have a day out with Callum and net some friends at Harewoid House. Callum had a lovely time and enjoyed running after Isabelle! So it was lovely to have some quality time with Callum. We try not to let Callum feel left out and gave him his little speed boat also from Paul's work on Wednesday (minus all those tiny bits you get with playmobil). He loves this boat and went to bed with it. It actually kept him entertained until after 8 am thurs, not heard of these days and meant I actually had to go into his room to see what he was chattering about, rather than him bounding across the landing at silly 0'clock, letting everyone know that he is awake!
Playmobil and Lego - defi the toys for the coming years, not just cos the boys love them, but mum and dad live them too!
So we have come full circle since my last entry on Sunday and that is to be back in LGI, though on a shared bay on 76. Harry has had a fantastic time though driving this mini electric car and has mastered 3 point turns better than his mum! It's a Ferrari and Harry looks the part as a formula 1 racing driver. He has explored the car as his dad would, lifting up the seat and examining the charging area, looking at the wheels, admiring the dashboard lights etc, in total awe of it. So that today has made hospital easier.
We have seen some familiar faces, but there are some new ones too. One dad was being shown around the ward and looked shell shocked. His 2 year old is in. There is another little girl opposite us, diagnosed 3 days ago. You can tell the newly diagnosed children as they have all their hair! Harry still has wispy bits, he has his eyelashes and eyebrows, but these could be lost with this new chemo.
It must take a certain person to work on this ward, as children get newly diagnosed, some relapse and others make it through. On the whole survival rates for childhood cancer have increased dramatically in recent years. However, there is still a log to learn about his neuroblastoma forms and how to cure it. There is still an awful lot of research to be done, to get better outcomes.
We, Paul and I are going through the process of grieving for the life we had, whereby we went on trips out, had holidays etc. we have for the last 14 years made the most of cheaper breaks away between jan and march. It is doubtful this will happen this year. If we knew Harry woul be ok in 6 months you can put up with anything, it's the not knowing and also the treatment, Harry is on means that we can't go on jaunts away or trips here and there. Though fingers crossed he stays well and maybe a short day trip can be arranged.
Of course, trips out are prob more for me and Paul in some respects. As illustrated as to how much Harry likes exploring the corridors of the hospital and it's what you make of each day! I am certainly learning that it is not the money you spend, but the quality of the time spent together!
So we shall see how the next few weeks pan out. Everything crossed please and lots if prayers.

Sunday, 12 February 2012


Well Harry is doing really well. HIs temperture has remained normal, but just continuing with the course of antibiotics as precautionary. So still on 77 in the single room. However, it has a Wii and  Harry has been mastering this, having played SuperMario Kart with his dad  and Wii sports with me this afternoon.  For the tennis game, Harry just jigs about like a madman waving his control and somehow manages to win a few games. He beat me at bowling a couple of times too.
We have been out on the corridors of LGI too. There is something strangely liberating about running up and down the corridors in Harry's 'supersonic aeroplane'! Sadly we did not reach North America as Harry had hoped! Another time!
Harry as I write this is jumping around to his Milkshake Rocks CD. So as you can tell he is very well today and should commence his new chemotherapy treatment plan tomorrow, which should tackle the cancer cells from a different 'angle'.

Friday, 10 February 2012

10.2.12 results day!

Well just to keep it short for now, but to keep people up to date. The results:
Harry has still got cancer in his bone marrow and so we can't move onto the next stage of treatment. Harry is now going to have a different chemotherapy treatment plan, lasting 6 weeks, with a whole set of retests after that. If the cancer has gone he can move onto the next stage, if not he can have 6 weeks more chemo. Harry arrived today well and had the second of his bone scans again without sedation, so well done Harry! We will get the bone scan results next week.
Harry had his bloods taken this am, but then had a reaction afterwards. He has kept his 'wigglies' in this week as his port would have been accessed every day this week, however it seems he has had a bug in his line, that was pushed into his blood stream when his lines were accessed this am. He spiked a temperature afterwards and so has to stay in hospital over the weekend to have a course of intravenous antibiotics. So Paul and can't even get any private time to discuss the results. We thought we had Harry's suitcase in thd car, but alas it's in the other car, so Paul has gone home to get it, then he'll stay in with Harry and I'll go home to look after Callum!

Wednesday, 8 February 2012


Well I thought I needed to put a positive blog on, as has been a while!!!!
Harry has clearly benefitted from his blood transfusion yesterday, that or the half a carton of single cream he drank yesterday! Yes, when I know harry needs all the calories he can get, when he asks if he can drink the cream, it is a definate yes!!!!
Well Harry's bone scan has been rejigged to tomorrow and Friday. Harry has taken someone else's slot! So we won't have the results from that for Friday, but at least it is this week. However, we should have the bone marrow result, which will give us a good indication about whether we can move to the next stage or if more chemotherapy is needed. I have butterflies in my tummy just writing this.
As always childcare plans are constantly being rejigged! As my friend was going to have Harry on Friday so we could meet the consultant and ask questions and take the information in, in our own time. However, as the bone scan has been rejigged, Harry has to have his bone scan at 9am, so we have to be in the hospital for 8am. The weather has also given out to be very frosty if not maybe snowy, so I would like Paul and I to travel together in his car, which has 4x4 ability. Though this means seeing if my friend can have Callum at 7.15am, then they later drop him at nursery. Yes, complicated. we then hope a play worker will sit with Harry, whilst we see the consultant.
Well Harry has been on top form today and it has had a really good day in hospital today. Harry was not isolated, so he could go into the playroom. We saw some familair faces which was good too. Harry even made a short animation. He borrowed some lego cars and police cars from the girl in the bed next to him and did some crash scenes, which bizarely ended up with a crocodile making an appearences and driving off in the police jeep - yes just a usual day out on the beat for the average policeman!
We got to put the animation on our memory stick, so Harry was so proud to show daddy when we got home!
Harry had a CT scan today and was down to have an anaesthetic for this to keep him still. Half an hour before the scan the anaethetist visited us and suggested Harry tried the scan without the anaesthetic, but if he wriggled, they could easily put him under! I agreed, but Harry was not sure. He's been full of energy and raced down the corridors to get to the scan, so it hardly seemed possible for him to remain still, but still he was throughout the scan and he held his breath when needed, for the pictures to be taken. I was so proud of him. He was so grown up and cooperative. Just like when I have needed him to take iodine twice today, in readines for his bone scan. This eveining I licked the end of the syringe and had to agree it was the most vile thing I have tasted, so was full of sympathy for Harry! He knows he has to take the medicine, in order for his scan to proceed succesfully, with the hope his lump will come out. A goal he has and was keen to tell the optician the other day, when I was trying glasses on!
So Harry has been in good spirits and a pleasure to be with today, unlike the little boy of recent days/couple of weeks. It can be like walking on glass. He will be laughing one minute and very tearful the next, but this has been due to the cumulative effect of all his chemo treatments and his bloods being as low as they can be in several areas.
In January, It felt like we were in control, I was doing Harry's GCSF injection, he was going to nursery for a few hours and he even made it out with friends and able to go to a bithday party at Whacky Warehouse (though he was black and blue following his antics of throwing himself down slides etc however, fun he did have). Then he got his first infection and it was confirmed that he was neutropenic for the first time. On talking to the medics it seemed likley he would remain neutropenic for a bit, but he didn't, 3 days later his levels had risen and he was no longer neutropenic! However, he was lethargic and for the last 3 weeks, we have not done much and as said Harry's mood has been a precarious one. This can ware you down on top of everything else.
However, as said he was really good today and may this continue regardless of the results on Friday.
As for Callum, he has been in nursery the last couple of days. He really likes going now and strolls in not giving me a second glance, which is brilliant. He fell asleep at tea time today, so missed his tea. This cat nap, meant he didn't fall asleep on the way home tonight and was full of it before bedtime. He was rolling around on the landing saying he was a wriggly worm and didn't want to be caught to get undressed! He's in a toddler bed now, and took him all of about 2 days to figure he can get out, so now bed time has become a bit of an issue as instead of on occasions we have left him to cry in his cot, he just gets out now! So bedtime has become more time consuming! The last 2 nights he has requested he has his cot back, I think he misses the security of the cot sides and so tonight to settle him, we had to leave he light on in his bedroom.
So now on a morning when Callum wakes, he potters across the landing to our bedroom. The first morning he did this, I could hear his voice and quickly realised that the voice was getting closer and that he wasn't in his bedroom!
He is such a a character and has the biggest cheeky grin, that one glance of this usually melts you!

So Harry has an echo tomorrow, an audiology test and this bone scan in the afternoon. As he did so well today without an aneasthetic, they will try him tomorrow without sedation. However, he will still have to fast in case he does not lie still and sedation is needed! However, I have faith in Harry. He understands so much for such a little boy!

Monday, 6 February 2012


So we end today with thd planned events of the week not quite happening as they were supposed to! I did get my car picked up to be repaired as planned so that was good. The reluctant community nurses came to take Harry's blood. It was clear when they telephoned to arrange the time to come they thought it was just me who wanted them done, which I did, but the hospital organised it as they thought his blood counts would drop by sunday! On arrival of the nurses I was just on the phone to ward 76 having received the news that there was a problem and Harry's bone scan would not take place tomorrow and Wednesday. I found this news devastating as it means that on 10th feb we would not get all the results needed and was not sure if this would impact on the planned harvesting of his stem cells in feb etc. so I was fighting back the tears when the nurses arrived. They seemed fed up to be here and when I explained why I was fed up, they were not empathetic at all. I explained that Harry's blood counts have been precarious of late due to the cumulative effect if the chemo and the nurse responded by saying it was easy to get paranoid! Well at 2pm when I was telephoned with the results to say his HB was 6.7 and so needed a blood transfusion I wanted to shout at the community nurses! I know when Harry's bloods are dropping, I live with him and can see his behaviour deteriorating to that of a tired boy. Like a child at bedtime, when they want to carry on and can be giddy, but seconds later crashing and burning and being tearful! I guess with my current emotional state I have the tendency to over react, but I felt the nurses had truly no idea what we were going through and seemed to have changed from the helpful nurses they seem to be in the early days. Whether this is because they are understaffed and overworked like most of the front line services I am not sure. I know we live the furthest point from their base at Hunslet, but I do not make the boundaries up nor located the dam office! At this time support is what we need from professionals not to feel a burden!
We decide to plan the transfusion for tues am seeing as his original
Scan was cancelled, save having another late eveving, plus I had Callum and Tuesdays is his nursery day.
So we had a birthday tea at mum and dads today, just in case Harry not home till late tomorrow, shouldn't be, but these days you never know! It was Harry anyway who was insistent on me doing something! When he asked how old u was , I said 36 and he replied that us old! So nothing like your 4 year old for making you feel good!
Then just before coming home, we get a call from ward 76 and they are trying to rejig someone else's scan so Harry can now be fitted in thurs and Friday! Apparently the reason for the delay is that the dye needed has not come from Germany, something to do with the manufacturing company! Anyway, our consultant is desperate for the bone scan to go ahead to keep on target for the bigger plan if the news is good!
I don't need Alton Towers for a roller coaster ride, life itself is just that!

Saturday, 4 February 2012

Saturday 4.2.12

Well it did really snow!!!!! The forecasters not wrong, however where were the gritters!!!! Hope Paul has got to work ok, he is on nights tonight!!!!! Oh well hopefully not too busy on the billy burgling front as there will be evidence from footprints if the snow stops!
Harry had his bone marrow test yesterday, where they put  2 needles into the base of his back to get a small section of bone marrow to test. The third time this has been completed. He is given gas to put him under and either his mum or dad goes in with him whilst he goes to 'sleep' then we meet him in recovery later! It was mum this time. Then he had a kidney test, which involves dye going into his system and 3 samples being taken, at intervals over 4 hours. They also took his bloods to check. I noticed that Hary had bruises where suction pads had been for monitoring purposes when he had his bone marrow test. He has not bruised before when this has been done, so an indication that his platelets and HB down. Once results were recieved he was on the borderline for his scores, so after much deliberation and i think following concern from us that they would drop by the end of the weekend to very low scores, a bag of platelets was ordered to be transfused! Harry's had a few of these now! So Having arrived for just after 8am, a little late due it being -7 and having to defrost car twice we got home at 7pm, so a long day.
We thought the community team would test Harry's bloods again on Sunday at home as he was not given a blood transfusion, so his HB scores need observing, however when I rang to find out what time they would come I was told they did not do this service on a weekend and it will be Monday. I must admit this annoyed me, as I thought it was all fixed out yesterday for it to be Sunday. When the nurses came to do Harry's injection they easily added in a blood check on a weekend, however now I am doing the injection, they can make their excuses! Just glad I used my instinct in those early days that by not doing  the injection it got a nurse visiting and advsing us and even on Christmas day!
Harry has been ok today and enjoyed playing out in the snow. Though wrapped him up like a Michellin Man, as he kept his wigglies in, which means he has needles going into his port. These usually come out on discharge, but stayed in as thought would be accessed on Sunday. Therefore, with any rough and tumble these needles can come out!
I am at times though understanding, why some of the families I deal with end up dumping their relative at hospital, as community services are really streteched and there is little support or so it feels a lot at present. We had support in the begining, but lately nobody has time to sit down and explain stuff to us, its all garbles and so mistakes for times of appointments are being made. When in these situations, it doesn't take much to over react to stuff you would normally take in your stride!
I guess the next week will be stressful as a lot rides on these results. Harry was complaining yesterday of joint pain in his legs and your mind begins to wander whether the cancer is still in his bones, or was it just the result of mucles being stretched by walking up the hill from mum and dad's the other day!
We have to stay strong. Though, I have to admit we so want a break away and a change of scenary, if the results are good, we may get this, if not, we will be tied here for a while longer!
On one note though, we visited some friends and their baby on ward 59 yesterday and were thankful to be going back to ward 76 as it is much nicer and smaller and friendlier! Partly due to the charity Candlelighters! Probably also due to the common denominator 'Cancer'.