Sunday, 15 April 2012

Sunday 15th April

Well you know when I am not doing lots of blog updates that we are too busy enjoying life at the moment!
That we have been doing!!!
Harry had his chemotherapy on Easter Day, which was 6 hours of chemo and hydration! His appetite decraesed a bit, but he has been well.
Harry even attended nursery for a few hours on Tuesday and Wednesday. It was fantastic to see him wanting to socialise with his peers. I do feel he has far too much adult company at the moment. Wednesday he was a bit unsure about staying once there, but with encouragement he stayed and when I phoned the nursery 20 mins later he had settled and had, had a great day when we picked him and Callum up at 3pm.
On Tuesday I even got to work! So Normality resumed briefly! I am currently on annual leave, which feels much better than being on sick leave!
Wednesday after nursery we popped into Becky's to see her 3 children. 2 of whom we hope will be in the same school year as mine. We find out about school choices next Fri 20th April and as rumours go there are an incredible amount of siblings on the books, leaving few places for the many others who need school places. On top of this it has been announced that there are to be 1000 new houses to be built in Otley. The infrastructure just cannot cope, without extentions of schools, doctors, dentists etc. Lets hope the provisions are made along with the houses! Otley is a fab place to live after all! Although not so sure of housing in the fields behind where we live, where we get to see the cows from the boys window! Not just  a case of 'not in my back yard', but we are concerned about congestion, access, drainage, consequential flooding etc. etc.
Anyhow sidetracked! I was going to say a big thank you to Becky Lister whom has raised just over £400 from making special occasion cakes and selling taggies. This money will be used to buy an ipad for Harry and we aim to give it to him the day after his operation (26th April). Having got an i phone myself I am fed up of sharing it! Also having got an i phone I have become a convert into the benefits of i phones and other androids. The applications are fantastic. The ipad will be used by the whole family as films can be downloaded etc etc and will provide sanity to us all in the coming weeks that Harry will be in hospital!
On the Thursday we went with some of Harry's friends from 'baby group' to Saltaire on the train. The forecast said rain, but we got beautiful sunshine. A lovely afternoon had by all! Harry so loves socialising with his friends and it has been great catching up with folk, resuming normality.
Paul has had to work nights this weekend, so we flitted to Grandma and Grandad's for the day and Saturday night. We have not stayed over in months as Harry has not been well enough, so it was an adventure! I got some time out seeing a couple of friends, so everyone happy, apart from daddy - working :(
So the week ahead!
Stem cell mobilisation has been happening this week in the form of the chemotherapy on Easter Day. Followed by daily injections G-CSF, which are double dose and increase the production of stem cell cells. We administer these injections via an insuflon, a plastic tube going into his skin, so that we do not pierce his skin on each injection. The side affects were achy bones. Harry is wobble on his feet first thing in a morning and he has complained of aching feet. At least we know this is the side effects and not worried that the cancer has come back in his bones or bone marrow!
So the stem cells are being mobilised into action! Harry will have a Vas  Cath fitted via an anaesthetic on Tuesday. This is a specialised central venous catheter used to take his blood out to access the stem cells. Then the machine has been booked for Wednesday, Thursday and Friday for stem cell collection. Hopefully enough are collected on the Wednesday and then we won't need the addtional days. Lets hope so as we are out Wednesday night at Tiger, Tiger in Leeds for a gig that has been organised by Paul's colleagues in honour of Harry. Should be a fantastic line up and the thought of taking Hartry back to LGI for 9am on Thurs will not be good!
Though the main thing is that enough stem cells are collected as there is a chance that not enough are harvested. This happens in a small percentage of cases. When this happens then stem cells will have to be retrieved via his bone marrow, which is much more invasive. I guess if this happens his surgery booked for 25th April to remove his tumour will not happen. But lets not go there as we are being positive!
The stem cell collection happens over 3 to 5 hours and harry is connected to a machine. The Vas Cath facilitates the blood flow out of Harry. The blood goes in a machine and the stem cells are extracted and then the good remaining blood returns into Harry via his existing port! Clever!
The reason his stem cells need harvesting is because following his operation he will have high-dose chemotherapy. This is needed despite his tumour being removed and thus being in remission as there could be some rogue cells left behind. As said Neuroblastoma cancer is a very aggressive cancer and it is hard to treat and provide a good prognosis for the future. Many children relapse and as yet there is no protocal to treat a relapsed case. In relapsed cases chemotherapy is given to try and prevent the spread of the disease, but this just bides the child extra time and the eventual result is palliative care. Anyhow we are positive, but obviously we cannot be complacent! As said high dose chemo is given to mop up any rogue cells, however this also kills the bone marrow in the process and so a stem cell transplant is needed to enable the bone marrow to regrow. This process requires approximately a 6 week stay in hospital and Harry will be isolated. This will be because his immune system will reach rock bottom and he will be very suspetible to infectioins and so visitors during this phase will be minimal.
So From 24 th April, Harry will go into hospital for his operation scheduled for 25th, he will be hospitalized for about a week, then come home for about a week and then he will be in for 6 weeks! Prob till the end of June.
He will then have 3 weeks of radiotherapy.
Then 6 months of more drugs! Some have side effects and may cause periods of hospitalization. However, that seems a long way off yet. But as said months of treatment still to come.
However, we have been enjoying ourselves for the last 3 weeks and making the most of time together, current health and consequential happiness! Though, we are acutely aware how much fun Harry has had recently and thus how hard he is going to find the forth coming weeks. We have explained to him what the next weeks behold for him and I over heard him telling someone, though like us it is easy to explain and less easy to endure! So we need a lot of prayers and encouargement to keep our spirits up!
One thing that has become acutely apparrent is how powerful empowerment is. Such a buzz word of the last decade, however to empower Harry gives him control. This can be about him being involved in setting up his feed machine and he turns it on and sets the setting to the right speed; to being in control of counting to 3 when a needle is inserted; to wiping the insuflon with an alcohol wipe to clean it! If he is involved in his care then he copes so much better with it. This goes for everyone, but seeing Harry actually benefitting from being involved makes the word empowerment have a greater meaning! Even at the age of 4 control is theraputic and therefore no one should be assumed as not having the ability to take control of certain aspects of care and thus empowered!

By the way, I was being curious and looked at the audience of this blog and I could see how many pageviews had been made by people in different countries. The stats are below! I know of some poeple in other countries, but some I have no idea i.e. Russia and Brazil! However, thank you everyone for your interest in Harry it does touch us so much!

United Kingdom
United States
Hong Kong


  1. Hi Sarah, I'm glad things are looking up and I hope Harry continues to strong! As an owner of an iPad, I can vouch for how amazing they are and I'm sure Harry (and the whole family for that matter) enjoys it. Please could you let me kmow how plans are going with the fund raising event at the Craiglands, I'd like come to the event and help out as much as I can.

    Take care!


    1. Hi Daniel, hope work is ok and you are getting into it. My home email is
      Ball planning conning on well thanks. Thanks for your interest. Currently all tickets of thd ball are reserved, but there may be room for a couple more people, would it be you and your girlfriend? We will know next week hopefully as still waiting on 2 tables to confirm numbers.
      There is a miniature railway event on 17.6.12 in Shipley in aid if Candlelighters, don't know if you know about that? The details are on the Candlelighters web site
      Take care x

  2. Great to hear things have been positive the last three weeks. Is nice to have a little piece of normality I bet. Hope the next few weeks are as positive and certainly our family will be thinking of you all. Take care of yourselves. Xxxx