Thursday, 26 April 2012

Thurs 26 th april

Well Harry was sitting up at 10 am interested in Lego! He was very subdued and in pain when he coughed, but considering the extent of his operation yesterday he was making remarkable progress. He has remained on an epidural for pain relief and this has kept him comfortable. I left Harry at 10.30am with granny and grandad and daddy came on this afternoon. He was asleep exhausted from a data entertainment of puzzles, making cardboard cars, reading stories etc that he was asleep when I arrived back on the ward this evening. I went home to attend a rotary club meeting at lunch time with my friend. The purpose was to give a presentation on the work of Candlelighters and CLIC Sargent, both children's charities that have supported Harry. It went well and with the support of my friend El operating the computer for the power point presentation I feel everybody is more aware of the work of the above charities. We also got a donation and hopefully some raffle prizes for the ball in July, so a good day for everyone! With regards the ball I think about 4 weeks ago all tickets were reserved! I know some people are still interested in tickets. I am meeting with my friends next week to see who we have the money off and if there are any spare spaces. We are amazed at the response and if we could get a bigger room then we would, but we can't. A lot if people in Itley who know Harry are supporting this event. So thank you. Though for those reading this and who know they have a definate reserved ticket, please we need your money by 30 th April so we can see if there are any spare tickets left.

Wednesday, 25 April 2012

Tumour removal day!

Well today has been much anticipated. At times during Harry's bolt on chemo program we wondered if he would never make this stage. We dared not at times look too much into the future treatment programme that lies ahead for Harry. However, here we are! Harry is now officially in remission!! The day commenced being rudely awoken at 6 am as medicine had spilt on his sheats and these needed to be changed. His NG tube has 2 access points and pressure had built up making one access cap explode off! He awoke in good spirits and could not wait to go and play in the playroom. I had explained to Harry the plan for today and he understood. He likes to look at the photos I have on my phone and scrolled through until he reached the first one. A picture of Harry with stitches all across his tummy following his biopsy in November. He asked if this was going to be him again in the eve I.e with the stitches. I said yes and with this confirmation he left it at that and went and played in the playroom when it opened! At 8.45 he ran to the theatre. He happily read a book sat on my lap and I told him the liquid was going into him and he would be asleep in seconds, which he was. I laid him carefully on the bed and kissed him before leaving theatre confident that he was in safe hands and the best would be done. Having had a surreal day, a bit if shopping, Paul and I went for lunch. None of it felt quite right though and although the waiting wasn't as bad as I thought it would be occasional thoughts of what ifs entered the mind. I also went through the scenario of Harry's funeral calmly in my head thinking he was so happy to go down to theatre and mentally I had left him in a good place! Well may be a little dramatic thinking of funerals, but the surgeon did say he had lost a small percentage if children on the operating table! Anyhow we pottered about and came back to the ward about 3pm. The nurse hit a progress report and the estimate was about 2 hours more. This was a fair estimate, not one of my husband's when doing car maintenance, 2 hours turns into a whole day! So at 5 we were called to see Harry in the recovery room. He was vaguely aware of what was going on. He managed to waive to a nurse leaving for the end if his shift. He wanted to speak to Granny on the phone and incoherently asked her what she was doing! He also managed to ask for more pain relief when the epidural was turned down! We were back on the ward for 7 having got his pain under control. Mr Roly Squires the surgeon did a fantastic job. There were no complications. The tumour came away in one main mass and 5 smaller pieces. He said it went really well and he thinks he has removed 100% of the tumour. We have seen a picture of the tumour and a picture if him opened up and where the tumour was. Both his kidneys should be functioning well and the tumour came easily away from his intestine, so no damage! Truly magnificent! Harry is in a state if comfort. He was briefly awake and asking all about his tubes and even wanted to see a picture if his lump. Harry is such a great kid, we are so proud of him. Truly relieved that this hurdle has been jumped. Now we hope for a speedy recovery for Harry so we can move onto the high dose chemo stage!

Tuesday, 24 April 2012

23.4.12 eve of Harry's operation

Well are on the surgical ward at LGI. The oncology ward feels along way away and the familiarity and comfort is missed! The surgical ward should be for short stays only. It is sprawling and no separation between bats, so very noisy! My complaints of noise on the oncology unit are nothing in comparison. Harry has only just gone to sleep and it is 11pm! So Harry is to go to theatre between 8 and 9 am. The operation will bd about 8 hours. Due to thd tumour being attached to other organs the operation is complex. There are many complications that could occur due to where the tumour is. The intestines could be damaged, his kidney could be damaged. People can live with 1 kidney,but in Harry's case he is much better with 2 functioning kidneys due to the toxins that the high dose chemo will present. 1 kidney could struggle to eliminate the toxins. There are other complications, but the surgeon is hopeful there will be none. Prayers please to ensure that tomorrows journey is as smooth and bump free as possible! Due to the tumour being attached to organs about 95 % of the tumour is likely to bd removed. Hence thd need for radiotherapy later. To ensure any if the tumour left is zapped. Thd high dose chemo in a few weeks is to zap any remaining cells in thd bond marrow and bones. He has to have this operation, bug it is still hard seeing Harry run around today full of energy. However, without this operation his energy would not last. Therefore there is no decision to bd made about the op. that's the easy bit. Roll on next week when we are home again and Harry is in the recovery stage!

Thursday, 19 April 2012

19th April

Well the scores on the doors have not been as good as hoped in relation to achieving the right amount of stem cells and therefore we have been holding our breath! Following a third day of stem cell harvesting 4.5 units of stem cells have been harvested. The consultant wanted 4 units and so this has exceded expectations and we can breath again. Not being over dramatic but it seemed like everyone medical did not think that this level could be achieved when Harry's scores were assessed. Therefore we feel immensely pleased that the amount exceeded expectations and can only thank all those praying for Harry and that our prayers have been answered. we feel it is a little miracle.
With this hurdle over we can move onto next weeks plan: Tumour out! This will be on Wednesday 25 th April.

Tuesday, 17 April 2012

17.4.12 stem cell harvest

Today Harry had to be in hospital for 7.30 am. We had planned for Harry to go in mon eve to avoid early get up etc. However the ward was full!
Well Harry was actually in fabulous spirits this morning and was racing around on arrival, prob much to the annoyance of those patients still sleeping! The play worker Tracy showed him what a Vas Cath was and where it would be inserted. He understood this and was ok about it. We went down to theatre for 9am and Harry raced down the corridors pulling faces at myself and the nurse. The anaesthetist in theatre was fab and made Harry laugh until he was put to sleep.
The procedure took about an hour.
By 11 am Harry was in a music session in the playroom beating a drum as loudly as he could!
I thought we would be home for lunchtime, but since Harry's counts showed that his stem cell count was ok and his white cell count was rising too, which apparently can cause a see saw effect and cause his stem cells to drop as a result. Yes I don't really understand it either, but what that meant was that they decided to harvest Harry's stem cells today.
At 6pm we found out the count was only 1.38 units. We need 4 units! He is going back tomorrow for more harvesting! So let there be a good harvest tomorrow. Then the gig at Tiger Tiger tomorrow night held by Paul's colleagues can be the harvest festival!

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

Friday, 6 April 2012

Friday 6th April

Well its been a really good week! We went to church on Sunday, Harry has not been able to go for weeks. His energy levels are brilliant and he was pleased to see his friends at church too. Though Sunday did end with a trip to LGI as his NG tube came out, but at least a round trip of about 1 1/2 hours sorted that one out, a few tears, but soon forgotten!
On Monday we had to visit the dentist for Callum, his first visit. Yes, we did try and prepare him, via reading Peppa Pig's trip to the dentist over and over, however the power of Peppa this time did not over rule Callum's cantankerous nature! Yep, you guessed it, he would not open his mouth!!!!!! The cheeky monkey a day later when passing the dentist, said triumphantly 'I did not open my mouth for the dentist!' and upon saying this opened his mouth as wide as he could, so where was the dentist at this point!!!! There is the next time in 6 months!
So following the dentist we went to Harewood House and met friends up. The boys had a fab time playing, digging in the mud, playing in the play area and we even saw a Heron stealing the penguins' fish, just before leaving and the rain descending!
Tuesday was a busy day. Callum was in nursery, so after my physio appointment I took Harry on the train to Leeds and we checked out a dress that I had ordered as a potential ball dress, however, they always look so good on the models, but a dogs dinner on myself! However, Harry enjoyed the train ride! We then picked Callum up early and  went home to meet friends. Harry loved playing cars with Adam and Sophie and Callum played and watched the lovely Peppa Pig!!!
Harry had his playworker come Wednesday am and had fun with her, whilst I could catch up with washing etc.! Then we met a new playworker in the afternoon, whom is a volunteer play worker. I have been linked to her via education Leeds and the plan is that she can see Harry in and out of hospital, so fingers crossed it works, as the link in hospital will be inavaluable to keep Harry's and our sanity! We also popped into town briefly and I took Harry into The Shoe Room, whereby he decided that the shoes carefully put on their sides for display purposes should be upright and loudly declared that the display of bags on the floor looked 'a right mess!' Fortunately the shop assistant burst out laughing as I did! As you can imagine, we left sharply!
It was Grandad's birthday on Thursday and we went to McDonalds for lunch!!!!! Well Harry's appetite has been incredible variable and so it was not worth wasting money on going for a fancy meal and Callum is still variable on his attention span to sit still. Well Harry had a kids fish finger meal, he decided to swap his kids fries for my mum's go large fries and he ate the lot!! So we were all chuffed. He took an age to eat it and Callum got bored and having attempted to rearrange the furniture in McDonalds, yes a fine feat as most of the furniture is secured to the floor, but he found a rather tall bollard that he attempted to move around the entire restaurant, before I took him outside, where he was trampling on bushes trying to get to the window to bang on the window at Harry!!!!! The day was glorious with sunshine, a far cry from the snow storms of the previous day. There was still a slight chill in the air, so Granny said to Callum, 'put your coat on' to which Callum immediately replied, 'its not a coat, its a jacket!' which it was, a hooded sweater, however at 2 he is already  'splitting hairs', as daddy would say mummy does! The boys were then able to play out in the open space by my parents house, getting sticks, pretending to make camp fires and just being boys. It was lovely to see the boys play together and i think this made my dad's day, having seen Harry so poorly on Mother's day.
So, it's Friday again. We went to Wacky Warehouse this afternoon and Harry and Callum met up with their friend Charlie from nursery. Harry has not been able to play with Charlie since his party in January. They got on like a house on fire and had a brilliant time.
Harry is due back in hospital on Easter Day for chemotherapy to stimulate his stem cell production, followed by injections that I can administer at home for the following 10 days. These injections GCSF, are ones I have given him before, but this time it is a double dose. The side effects can be that his bones ache, so we will have to see how he manages next week.
However, we have really soaked up the time at home and not having to be in hospital for the last couple of weeks. The community nurse came Thursday to take about 9 vials of blood from Harry  for various tests, we have not heard back, so we assume all his blood counts are satisfactory. He is certainly on fine form and despite Harry looking like a cancer patient, we can nearly feel that things are normal!!!
Though acutely aware of the looming number of weeks that he will have to be in hospital. He has his operation 25th April and perhaps will get home for a week, prior to his spell of about 6 weeks in isolation, so that'll take us up to the end of June. Past Paul's 40th, Father's day etc. However, a plan it is and how I like a plan!!!