Link to a special you tube video!

http://uk.video.search.yahoo.com/video/play;_ylt=A7x9Qafl0TlTEyMAmdBB4iA5;_ylu=X3oDMTBsZ3ZhODNnBHNlYwNzYwRjb2xvA2lyZAR2dGlkAw--?p=youtube+run+for+harry+day+ten&tnr=21&vid=d06c1b452b1c8187b1f5ecfb1162e623&turl=http%3A%2F%2Fts4.mm.bing.net%2Fth%3Fid%3DUG.416800048687%26pid%3D15.1&rurl=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DGdNkH8zdl3E&sigr=11a299thr&tt=b&tit=Run+for+Harry+Day+Ten&sigt=10l5k5rer&back=http%3A%2F%2Fuk.search.yahoo.com%2Fmobile%2Fs%3Fei%3DUTF-8%26p%3Dyou%2Btube%2Brun%2Bfor%2Bharry%2Bday%2Bten%26fr%3Donesearch%26first%3D1%26_tsrc%3Dapple&sigb=13eel2rte

I am not sure if this gives a direct link, but if you google You Tube then search Run for Harry day ten, you should find it!

Andy Johnson from Paul's work decided last year to train to do 10 x 10 km runs and raise money for us to continue on our adventures with Harry. He has just completed the 10 consecutive runs, with others joining him for some or all if the runs. 

Since Harry is so very poorly this will not happen, but we will use the money to have adventures with Callum this summer. It feels such a long time since we had real fun, because sometimes each day seems like a week. 

Harry's drugs are being increased every couple of days and even though we have done that, we are not on top of his pain. He is having extra oral top ups, to combat the pain and consequential sickness the drugs create.

He is still trying to fight and won't stay in bed all day. He insists on getting up. He is incredibly week, but still has ideas even though he hasn't the strength to build the Lego, he can still direct! 

The above you tube video has clips from footage we took last summer of our adventures and the last 4 minutes is dedicated to showing these.

I showed Callum the clips and was taken aback by him sobbing his heart out afterwards. He is beginning his journey of 

Grief and loss. Watching the  live footage of Harry hit him hard. He felt a real sense of loss and articulated that it upsets him that  Harry does not play with him anymore, he does not let Callum kiss or hug him anymore, he does  not let Callum get things for him anymore. Harry doesn't let us hug or kiss him much anymore either, due to it being too painful. I told Callum that it was ok to cry and get upset, as we get upset too and we wish that Harry could walk and do things like he used to. We need to support Callum too. I will also seek out support for Callum. Some people say he is only 4, but to equip Callum with the appropriate 'tools' to manage his grief will help him deal with future losses, it will help him continue on his own journey of growing up and hopefully help him survive as an adult. To not address such monumental changes in our family unit, will give him increased baggage for later in life. I hope we have the strength to support him and not wrap him up in cotton wool either as our only remaining son. 

We have already started talking to Callum about the fact that Harry will not get better, to be able to go to places such as Digger Land. It's hard to know how to approach the subject of dying to a 4 year old, but he is aware that animals die. 

Callum asked me the other day how long joey the hamster will live for. I said they usually live for about 2 years, so probably till Callum is 6. He asked me how long people live for and I said that it depended on whether they got poorly or not. We then talked about the difference between colds and more serious illnesses. I did sat that Harry was very poorly. Hopefully, drip feeding information to Callum will help a little, but none of us can truly prepare him or us for the infiniteness of death.

I have been given some books, so will look at these and then post the titles on here for your information. 

Recent photos!

25 th march

Harry has been very variable since my last blogg. He has continued having temperatures and so on Tuesday last week, his bloods were taken to be tested. The outcome was that he needed a red blood transfusion. Following discussions, it was arranged for this to take place at home on Thursday, with a McMillan nurse present for the duration of the transfusion in case Harry had a reaction to the blood infusion. However, on Wednesday evening at 8.30 we got the news that a microbiologist had found bacteria in the blood cultures taken. The on call team wanted Harry admitted to lgi, to commence IV antibiotics immediately. However, I felt that waking him up and taking him down to 

LGI was totally inappropriate and unethical. Waking Harry and taking him to hospital would have caused immense distress to him and thus us, for starters, but what also needed to be considered was getting the appropriate equipment in for Harry. Harry needs a special air mattress to sleep on, he needs a wheelie commode to access the toilet and he needs space! The side bedrooms on ward 31 are not set up for wheelchair users. Harry would have been isolated due to having an infection and so he would have needed his own room. Meeting Harry's needs adequately would have taken planning and would not have been achieved on an immediate admission in the night!

We have also been there done that with respect to going to hospital on a night time and the reality is that when the on call team take over for the night, it takes hours to be seen and assessed, meaning a disrupted night for all. This is hardly the order of the day and ethical management of a little boy who is dying. Despite being told that it would be a shame not to get on top of Harry's infection that could threaten his life, I stuck to my guns! Harry is not as he was at Christmas, beating an infection just isn't going to get him back to where he was and anyhow, he has had temperatures since 5 th February and it is only last week that blood cultures were taken and hence the infection identified. In usual medical style, diagnose and then treat. The reality is, that keeping Harry comfortable, in familiar surroundings, with his family and friends and the love we provide is what counts now. Not the distress of a hospital environment where they would prod and poke him umpteen times a day to check his temperature and blood pressure. I thought they could take me to court if they so wished! 

Anyhow, the team that was on the next day, fortunately thought keeping Harry at home, was more ethical! Instead of having IV antibiotics he has had a 7 day course of oral antibiotics and he has had antibiotics put through his port into the plastic line that connects his port to his vein. This is where they think the bacteria is. They call it 'locking the line'. Harry had a line infection in September 2012, which resulted in him having his port surgical removed and a new one being surgical inserted a week later. Obviously this is not going to happen now. In fact his port is redundant, due to the bacteria now. If it is used, it is feared that the bacteria will fe pushed into his blood stream causing septicemia.

Harry has not had a blood transfusion. The thought from the medics is, that the last one provided minimal improvement to Harry's quality of life and do giving another will probable be if no benefit. He would also need to have the transfusion done via a cannula and thus a trip to lgi would be needed.

Harry perked up on Saturday just gone and managed a trip to a small local farm. My sister, niece and brother in law were up and so they were able to enjoy his company. Although, having had a good day Saturday and we thus have hope of a few more, Sunday was a very different situation for Harry. He was very quiet, lethargic and in pain. Following discussions with the on call McMillan nurse I increased his pain relief patches. The rate went up to 140 micrograms, it was only 70 just over a week ago, this was the second increase in a week. I thought Harry would have been spaced out and asleep mist of Monday, due to the increase, but he wasn't. The pain continued and I topped him up with oral pain relief medication. 

On Tuesday we had a joint visit from a doctor from Martin House, our McMillan nurse and the community nurse. We had a very frank discussion with the team re, Harry's pain management and where he is at. Harry has not been eating for the last few weeks and so he has become very frail. Due to malnourishment his pressure sores are getting worse. The team predict that Harry is very much on the decline and in their view, unlikely to be here in 2 weeks. We had a frank discussion about managing 'the end'. Our current plan is for Harry to die at home, then transfer to Martin House, where Harry can lie in a refrigerated bedroom until the funeral. A quiet place where goodbyes can be said without the time constraints that a funeral parlour may have. A familiar environment in which Callum can say goodbye to his brother and also really understand the infiniteness of death, so he knows that Harry is not coming back.

Having had these frank discussions, Harry actually had a better day on Wednesday. Having increased his oral pain relief medication and having got on top of his fevers with the antibiotic, he was comfortable and able  to participate with decorating his army barracks, the latest project. He did have pain in his kneck when he turned his head, but it was a much better day than the previous 3. As a result, we had hoped for a few more good days and I began to wonder if he may last longer than the medics predict. It was only last June that they predicted that he would not make the summer. The optimist in me felt that we could perhaps get out again for a little trip. Having a good day with Harry lifts all our spirits and suddenly anything seems possible. I also got a proof read of Harry's story book, fresh from the printers! When Harry is comfortable, we feel able to cope and think of the future. when he is in pain, we feel helpless, our hearts so very heavy with sorrow and sadness. Watching your 6 year old son go through the suffering that he is, makes us wish that he can be taken from us sooner rather than later. Not that we don't want to kiss him, or hold his hand one more time, but to end his pain. Having a good day, makes anything feel possible.

Alas, today (Thursday) has not been a good day. Harry has been in immense pain and very quiet. He vomited back his medication at lunch time. I thus contact the on call McMillan nurse to set up a syringe drive for Harry, whereby his pain relief medicines and anti sickness medicines can be infused into him over a 24 hour period. The syringe gets changed by nurses every 24 hours. With much persuasion Harry agreed to having this set up. It involves a tiny needle being inserted into him, which stays there now. He was frightened of the needle, but eventually let the procedure take place. Moving onto this system means Harry only takes a minimal amount of oral medicine and at least, if he is sick, the pain relief that he needs will be there to ease things and make him more comfortable.

Thus our roller coaster continues.

Someone asked me the other day if I was prepared or ready for Harry to go. I answered that we will never be ready. I am sure some people in a few months will wonder why our grief may be just as intense as the day he died, considering we have had months to anticipate his death.

My answer is that we frequently grieve  in anticipation of our pending loss, but as said previously we parallel plan. Just as we grieve, we have planned for the future that includes Harry. Our future of late has revolved around a much smaller world, but even making army forts at home, means there are activities to undertake as a team, even if Harry has little strength to actually do the painting or sticking, he at least directs and has very firm ideas about his creations! When Harry dies, the future will look very different, Harry will live on in our hearts and his book will be a legacy to him, but actually holding his hand and physically doing things will be no more. 

It it the loss of the physical contact that I think no one can actually be prepared for. We all frequently say to each other that we love one another to the stars and back and round the world a billion times and back again. Not actually hearing those words anymore will be what we miss, every minute of every day.

I do hope the syringe driver can make Harry more comfortable and tomorrow we can continue with his creations, there is more to do yet! 

12.3.14

Well, having continued with my fight for services between health and social care, which culminated in me writing a heart felt email to the deputy director of children's services last week, I have finally achieved a 1 hour service on an evening 7 days a week! It just shouldn't be that exhausting and hard to get a service that meets Harry's basic need to get into bed safely on a night. I felt I needed one last shot at getting the service I felt we needed, but realised I couldn't keep fighting as I would be ill and no help to Harry. I am aware there has to be a limit to any fight, otherwise boundaries are crossed as to how much it is worth and it can take over ones life and the very reason I started it, to give Harry and our family a better quality of life gets forfitted. However, having set myself a limit of achieving what was needed, by the end of last week, we had the answer by Thursday tea time. It's also strange how managers change their tone to you once higher management intervene! All of a sudden I could have had workers both from health and social care last Friday! 

The agency we have, have given us 2 ladies, whom are sharing the 7 days, so one is doing 3 nights and the other is doing 4 nights. I have to say that, they are lovely. In fact the first lady whom came on Monday after an introductory visit with her manager, was so helpful. I could have cried, when she offered to wash up, whilst I got my tea. She could have just gone home, after putting Harry to bed, but no she went that extra mile. This lady is being paid an unqualified rate, but her compassion goes above many of the nurses we have had, being paid a lot more than herself. The other lady, whom came last night, overwhelmed me again as she had really listened to Harry's interests and again went above her remit and brought Harry several balls of cake icing, for him to use, when baking again. 

It makes me realise that qualifications are meaningless, only in the sense of the rate of pay does it make a difference, but not in the quality of the care.

In fact we have had the best care from those, that have no nursing qualification. Don't get me wrong, we have also had a couple of really good nurses too, but their qualification, seems to make them so rigid in their remit. Though that goes through to the ethos of the department they work in, whereby their managers only see Harry being their remit, not the washing up or any other small way they can make a difference to our lives and make things easier. 

Last week, saw a decline in Harry too. He had his bloods taken last Tuesday and his red blood count was very low, 5.4. It hasn't been this low since January 2012 when Harry was on his initial chemo therapy program and when the disease was still present in his bone marrow. His platelets had deflated to 18 too having reached the dizzy heights of 100+ back in January this year. This is all indicative that the disease has spread to Harry's bone marrow, though only a bone marrow aspirate would confirm this, which is a pointless test now. Harry has previously had 6 bone marrow aspirates and it is an invasive test, which involves an anaesthetic. 

Harry underwent 2 transfusions last Wednesday, a red blood one and a platelet one. Due to the transfusions not starting till 2.30 pm, we were based on the ward and not clinic. It was strange being on the ward again. I find it hard being there, with the knowledge that Harry has relapsed. I sit there and wonder if the other parents think Harry is newly diagnosed, because he has hair. I remember using that as an indicator. 

I got talking to a parent and her son in the playroom. I was eaves dropping on her conversation with her social worker, which was underway only about 3 feet from us, so hard to ignor. I was struck how all the things she was talking about, such as trying to return to work, but life being unpredictable re her son's treatment made it difficult to plan etc. etc. it was like hearing me 18+ months ago! I realised I'm not alone in the way I think about things and we got chatting! Although when you get to the bit about swapping where on the ladder with treatment each of our children is, I find it difficult to deliver the information that Harry has relapsed, as I feel I am taking their hope away and we are the harsh reality that treatment fails. It is also hard to reiterate when asked if surgery could be undertaken  to remove Harry's tumour from his spine, that no, Harry has no lifelines left, just pain management. 

Having had the transfusions, Harry didn't perk up like hoped on Thursday and Friday, in fact he has had intermittent temperatures. Thursday night, he was saturated with sweat and I had to change his pyjama top. This is how it all began in October 2011. Though then the constant temperatures were put down to a viral infection. Back then I was crying on the phone trying to get a home visit from a GP, but was denied this. Therefore yesterday, was taken aback to see a GP on our doorstep to give Harry the once over, having spoken earlier in the day to our McMillan nurse re Harry's temperatures. I am sure the temperatures are down to the disease progressing within Harry's body and the GP could find no other cause, so we are still of that mindset. Perhaps being palliative care, has the advantage of home visits from GPs without me actually requesting one! However, back in October 2011, I would have greatly appreciated a home visit, but the general consensus of a viral infection, led to none! 

I do feel we are very much, back at the stage Harry was in October 2011. This has caused me much searching within me, to feel that we have led this life of cancer for nearly 2 1/2 years, to be back at first base, but this time to have no lifelines. To watch my beautiful Harry deteriorate so cruelly and slowly right before my eyes is so excruciatingly heartbreaking. The grief is overwhelming at times. As the weather brightens the needs of my boys are getting further apart, particularly as outdoor activities resume, the fact that Harry can't cycle, gets very cold quickly and can't enjoy the park, rules out the past times we used to enjoy as a family. As I hear and read on FB of other families enjoying the sunshine in the great outdoors and grieving as I relive the fantasies I had for us, it all becomes so hard at times. The age of the boys now, 4 and 6 are wonderful. They both have so much about them and it was an age I had felt would be perfect for the commencement of so many things. Callum can now ride his bike well without stabilises and at the beginning of January we embarked on a short ride on the spofforth - Wetherby cycle path albeit very muddy. Back then I had longed for sunshine and dry days, to complete the return journey, enjoying a picnic and play in the lovely park at Spofforth. Alas, this is never going to happen as a family of 4. This is hard to come to terms with and is part of our journey in this mine field that is grief. I say minefield, because, just as one can be laughing and joking and making the best of things, we do not know where and how the next explosion will quite hit us. 

We did make the best of the sunshine on Sunday and having a nurse with us 9-2 I decided instead of being housebound we could head to church. This was actually a really good decision and the nurse assisted Harry in Sunday school whilst I could sit in church, to half listen  to the service, but have a breather from the hectic ness of our lives! Then after the service, the nurse watched both my boys, whilst i chatted to friends and updated them. Harry was on really good form that day and as he wheeled himself down the isle to communion, I know everyone feels inspired by his determination. 

Once home, I decide that we should head to saltire and in particular Roberts park. The nurse goes home and we embark on a family outing! We queue for ice creams and hot dough nuts, then I take Callum to the park and daddy takes Harry for a walk, before we meet up again and head to the nearby bowling alley, an activity we could all participate in.

Due to Harry being in intermittent pain and being variable with how he feels, it is hard to choose activities for him to join in with. I have been researching places that are wheelchair friendly, but ultimately, Harry is really quite poorly now, that the big days out are numbered.

I think again about what I wrote in my last blogg though about parallel planning and just as the next day can be one for staying in doors, with the main focus being about keeping Harry comfortable, it can also be one where a little fun and activity can still be the order of the day. Harry made it to school this afternoon, for the first time this week. I am learning that dying has no remit, there is no ryhme or reason, but even as the end draws closer, there is still windows of opportunity for memory making. The goals change and our world becomes smaller, it is how we choose to view it that makes the difference. Just as we encounter so many negative experiences from professionals involved with us and the system itself, there are also so many lovely people involved in our lives too that make a positive difference. I had a huge smile on my face today as we are another step closer to actually being able to print a short story that Harry has composed and written with the help of Janey. Watch this space for more info on it! I actually looked up today and soaked in the beautiful sun kissed countryside we live amongst and the sight of lambs, jumping about, amongst the daffodils. I love spring! 

Monday 24 th Feb

I haven't been able to write on this blog recently due to the amount of time I have spent trying to co-ordinate an adequate care package to support Harry at home.

I have given so much time to this fight and energy and in between trying to support Harry, Callum and managing home, oh and trying to be a wife, but failing really on that point, being a mother comes first for now. The trouble is due to the huge stress and emotional exhaustion we feel, relationships do suffer, who knows what will be left at the end of all of this, particularly as I am appalled at the shambollic end of life care provision that Leeds has, pretty much nil point. This thus contributes to our anxiety and exhaustion and intensifies our frustrations. Mine in particular being around the fact that I never asked anybody to treat Harry, but had the treatment protocol thrust upon us and my research says that Harry has had in excess of £600 000 spent on him. Now he is of no benefit to medical science, his care comes down to pounds and pence and 'The System', which makes no provision for 'end of life care'. There is no fast tracking process for assessments, decisions on service provision and then the actual delivery of services within social care. 

We had a meeting on 27 th January, whereby different professionals came together to look at our needs and service provision. What I hadn't realised is that social care have 45 days to complete an assessment, then it has to go to panel, which for us at present is the 11 th march. If approved then, we then have to await further for the co-ordination of their services and the eventual delivery of them. 4 weeks have passed now and we do not have the support in place that we need. Health, social care and education are so disjointed and unco-ordinated in Leeds, that you would think they operated on different planets far, far away in the abyss of space! I do not exaggerate.

We did end up in Martin house on Monday 10 th February  and stayed  there until Tuesday 18 th February.

We have some hours from continuing care nurses, but I have struggled to get these hours around the areas of most need, getting Harry up and then into bed. Also around Paul's shifts too. These hours are in a minimum of a 3 hour block, but usually around 4 hours, as you can work out, 20 hours does not provide a 7 day a week service. 

We have a few hours on a temporary basis from children and families team, we also have another worker that can provide 4 hours a week. However, I am spending so long working out who provides what hours, who can work when, when Paul is working, when he is around, then thinking about the fact that he is nearly back up to working full time, which means he could easily end up home late, as frequently used to happen and so I can't assume he'll be home at x time. Coupled with all of this Harry is very unpredictable, each day is different and it is also variable as to whether I have Callum to manage too! 

I need one provider of services and one co-ordinator. I have nurses coming in every 2 days to dressharry's  bed sores, now on his bottom and heels. We have a huge amount of equipment in place too, in fact we can hardly get into our bathroom now!

My head spins from all the phone calls I have had recently. 

I have finally contacted our MP with the support from friends whom have contacted him too, to try and highlight the lack of co -ordination and urgency put on the provision of adequate end of life care for children in Leeds.

I have high standards and principles I know. Our family support has become very limited as my parents have mobility issues at present. We have some fab friends who are very willing to help and I have utilised some of you. I know we have had offers of help from those we don't know too.

My biggest problem is having the time to utilise you all and have time to make contact and arrange initial meetings with those we don't know. 

As you can understand from above, my time is quite simply taken up with chasing the services we do have involved, to widen this and include all those people I don't know, for me at present is too much logistical planning, when I should be there for Harry! 

I am hoping my current plight will provide me with the services we need. To have one service provider and one contact would be wonderful. That is aiming too high, but it shouldn't be the case. 

One service, one vision, perhaps that should be a motto to developing a better journey for us carers, whom have the hardest job of all. 

As I said to a manager in health last week, it is a service led service around what works for the workers, it is not a needs led service around what works for a little boy whom is dying and is at the heart of this. I was told that it was a service led and needs led service!? I can't believe that in 2014 after all the serious case reviews re child protection and policy developments, that it feels progress is so very far away, there is a serious lack of communication, co-ordination and planning between departments, leaving us to pick the pieces up and try and create a jigsaw that meets our needs. We have too many pieces missing at present and I feel the system is failing their basic duty of care. 

I have been reading some information with regards end of life advise and good practice. 'Together for short lives' have a great information policy in their core care pathways information booklet.

It talks about parallel planning and here is their description of this: 

Parallel planning

It is often hard to predict what the future holds for children requiring palliative care. For some, periods of relatively good health are associated with the potential for an unpredictable, and potentially terminal event. For others, a period of deterioration may be observed, yet the child may have considerable time to live when the quality of their life should be maximised. Parents quickly experience the uncertainty that living with a child requiring palliative care brings, and with support, value a ‘parallel planning’ approach. Discussions with the child (where appropriate) and the family enable various options for care in response to a range of potential outcomes to be considered and written down in advance. Although children may be assessed as deteriorating or approaching the end of their life, it is sometimes the case that children survive these episodes. Parallel planning for life while also planning for deterioration or death allows a child’s full potential to be achieved and primes the mobilisation of services and professionals where necessary. Planning for the future at times of great uncertainty can also be comforting for children and parents. 

Whilst trying to plan for Harry's death, we also plan for his living too. By this I mean I would still like him to get into school. School have been great on being flexible about when he attends. Whilst having some hours from continuing care nurses, provided by health, I am very disappointed to hear that they can not follow Harry into school as this crosses over into an educational setting and they are not insured to work there! Education should provide their own nurses! Thus if this happened, there will be a duplication of services, a waste of resources and due to Harry's unpredictable health it is very hard to fix the hours of when he will attend. If a nurse visiting him at home for a 5 hour session could follow him into school for the 2 hours that he may be fit to attend, then his quality of life is maximised, resources are well utilised and not wasted. 

There is so much red tape and bureaucracy it is ridiculous. My son is dying, all I care about is maximising the life he has left and at the end of all of this feeling that his end of life care needs were well met. 

Watch this space, if I can't fight this now, I will continue to do so, so others have the service they deserve. 

Some pictures! The great pirate fest at Martin house and Harry's medal

8th February 2014

Well Callum and daddy were able to join us last Saturday at Martin House. Paul and I got out for a cheeky drink Saturday night, result!

However, Sunday was a different set of cards and my dad wasn't well. We got a call from my mum whilst I was bathing Harry, to say dad had such intense pain in his leg that he couldn't walk and was passing out. 

Paul dashes home to help them and I insist they ring 999 when I spoke to them. Dad ended up in Lgi for the afternoon. Apparently he had an infection, but they had wondered if he had a blood clot. He was discharged home at tea time, with medicines to take.

Unfortunately, life seems to be throwing us some right duff cards at the mo and our idea of a day out never came off.

The boys had a ball though and really enjoyed their time at Martin House. It was a full on pirate weekend! The boys and the carers made a cardboard pirate ship, with flags, canons, sails and even beards!

The boys made donuts too!

On Monday Paul headed home early to let the plumber in, as has been planned for weeks. The plan is to have a new boiler and in the process move the new one to our new garage, freeing up valuable wall space in our old garage. This is in line with the grand plan to convert the old garage, which we have decided to push on with, since Harry is wheelchair bound. Maybe even to have an ensuite bathroom too.

Callum had lunch with us at Martin house, then is taken home by Kate and Callum's best buddy - Fin.

Since Callum had nursery Tuesday and Harry had an appt. at wheelchair services for 9 am Tuesday, it seemed best that Callum slept at home. Though Paul was working Monday eve and we had to switch plans from my parents  having Callum to stay to my in laws coming over! 

Logistical planning! Yes, my head spins!

Harry goes to school Tuesday after the wheelchair service appt. and he has a good day. Daddy and I have a furniture moving session! With the plumber in, floorboards need to be moved to provide access to pipes. This meant Harry's bedroom needed to be virtually emptied!

Also with Harry agreeing to have an electric bed and air mattress, he very generously agrees that Callum can have his cabin bed! Harry amazes me how he accepts things at times. 

With this in mind, we have decided to turn the spare room into Callum's room, with more room for his bed and toys.

However, whilst we await the delivery of the electric bed from health, Harry remains in his bed, but in the spare room. Furniture is stacked up, whilst Harry's room remains empty! 

We could have stayed at Martin House longer, but I wanted us to all be under one roof, so Harry and I left Martin House Wednesday before lunch. Harry wasn't happy about leaving at all, he said he wanted to live at Martin house! Before he left, he helped to put up a display of the photographs taken of the pirate fest!

Harry seemed to go down hill Wednesday. He only managed a couple of hours in school. He kept going hot and cold. He had a temperature, but perked up enough to go to beavers. He was being awarded a badge for courage shown for fighting this vile disease. In fact he was actually awarded a medal - the chief scout's commendation for meritorious conduct. A very high award! In fact harry can be awarded the medal at Windsor, to celebrate St George's day!   This would be a truly memorable occasion, but in my heart of hearts I don't think Harry will live that long.

Harry was overwhelmed at getting the award! We have talked lots about it and he understands much more why he had got it and is incredible proud of it! I feel the award isn't just about his commitment to being at beavers in his short beaver membership, buthis courageous fight with this vile disease, smiling whenever possible and always having such zest for life and determination.

Thursday this week was a dreadful day. We had been told by the OTs that some equipment would be delivered at ours, but the equipment store would contact us to arrange a time. It landed on our doorstep at 8 am. The driver woke Harry up, whom so needs his sleep. The driver was also rude, leaving the heavy ramp outside the house. I said I was getting the key for the garage, but he left it outside and legged it to his van.

That morning we had the stair climber delivered and training on this. We then had the wheelchair company pencilled in to deliver Harry's new chair between 12 and 3 pm. Since the company had no morning appointments, I asked them to deliver the chair to school, so Harry didn't miss a whole day. He had to be at home for the stair climbing assess that morning and we were just finished and getting Harry ready to leave the house when school phone at 11.30 am to say the wheelchair people were at school!

I had been told that no morning appointments were available! 

We rush to school, but find the company have gone and left the chair! I was told by wheelchair services, that the company was supposed to see Harry in the chair and make any adjustments needed, before leaving!

I was utterly furious!

The chair fitted Harry ok, the care taker helped me adjust the seat belt, being z brand new chair, everything was stiff! The other issue with the chair, was that it was purple! Harry hates the colour purple! I never realised they came in colours other than black or silver! Seems like a minor issue, but to a child this is huge and seeing as they are having to come to accept that the wheels are their legs and they are attached to it for most of their waking day, it's like being told what to wear! It's about giving the child some choice and thus control over their lives, which in turn helps with acceptance. I guess this philosophy applies to myself too. The fact that plans are made around delivery times, and then they are not adhered to means we lose control of anything, in a world which at present by and large is very chaotic, unpredictable and incredible exhausting for us. 

We have no control of the progression of the disease in Harry and it is currently being vicious, we have no more lifelines for Harry. Watching Harry dramatically deteriorate before our eyes is the most excruciatingly painful experience I have ever endured. The sudden realisation of the infiniteness of death is progressively haunting me. 

I try and tackle the issue of the equipment store not giving us warning of the delivery on Thursday morning and the rudeness of the driver. I speak to the manager of the equipment store and he seems to take on board my concerns. I ask him about a missing piece of equipment and he denies knowledge that the piece was coming from them. So what happens it turns up Friday morning at 8 am again, without any warning of this, from the same people who denied knowledge of it!

It highlights the shambles of some of the services around us, providing us with no support when it is so very much needed.

Harry wakes up quite early Friday in comparison to the time he used to wake up. He hadn't got him in to bed as early as we had hoped on thurs eve as his catheter had blocked and we had to call the McMillan nurse out to unblock it. 

Harry awoke Friday, very tearful, grey looking and in pain. 

Friday was my birthday too. I had managed to get out Thursday evening  late on for some much needed vino with friends, probably too much to be prepared for a poorly harry. The plan was to get Callum to nursery and we had the OT coming to fit the equipment delivered. Callum was very unsettled Friday morning. He kept hiding in his room and burying himself in his bed, in tears. Again, highlighting the impact all of this has on siblings. The amount of attention we have had to give Harry this week, because it takes so long to meet his needs, means Callum is left to it.

I decided to ask Granny and Grandad to have Callum for the day, to give him some TLC! Callum was very pleased about this!

So we get the necessary equipment fitted and Harry perks up a little by mid morning, enabling me to get him to school and enabling me to get to my hair appointment and have a lovely lunch with some of the mum's from Harry's school. 

I celebrate my birthday with the boys at tea time with a fish and chip tea and obligatory cake! Upon getting Harry to bed I realise that he has had no urine output since the night bag had been removed in the morning. Therefore, meaning his catheter was blocked again. I had watched the nurse unblock it the previous night and so felt I could do it! I successfully unblocked it and he had a good urine output overnight! Yes, result! 

Harry awoke in pain on Saturday morning and I had to give him some breakthrough pain relieving medicine, equivalent to morphine to enable us to move him. Harry does have feeling back in his legs, but not to his feet. This you may think is good, but in actual fact means that Harry is feeling the pain from those pesky cancer cells. In fact he was better off completely paralysed from the waist down, as he felt nothing and movement and handling was much easier. The goal posts seem to be ever changing and we are struggling to keep up, thus we don't have the support package we truly need, plus the current assessed support package is very slow to materialise anyhow.

Upon getting Harry up, I realise one of his legs has a lot of fluid retention. Since we had a community nurse visiting from Martin House, I ask her to look at Harry's leg. This sets off a series of conversation which, culminates in Harry's oncology consultant being involved. We are offered investigative scans at LGI as one possibility could have been that Harry had a blood clot, for which he would have to take daily injections to thin the blood, the other possibility was that the disease was progressing and blocking a lymph node. This was more likely in my opinion and anyway what would investigations really achieve, certainly no increased quality of life for Harry. I can't put  Harry though more than need be now, I can't tell him anymore that treatment is going to make him better, because I know now nothing will.

I had arranged for support to help with the boys on Saturday as I was supposed to be meeting friends in Leeds for a long lunch, but due to Harry's unpredictable health over previous days I had cancelled this. I had Briony in too, whom we have been linked to for the past 18 months. She knows the boys well and gas a great relationship with them. I manage to get out for an hour and walk into town to get some of Harry's favourite yoghurts and some duck tape to decorate his the 'purple' chair. Once outside the wind slapped me in the face, I was alone for the first time that day and thoughts of  recent events made my eyes sting with tears. I could have started to cry uncontrollably, but I had a mission, which I chose to accept. Once home, Harry seemed in a brighter mood having given him more breakthrough medication before I had left. He was very pleased with my purchases and so it was mission complete! 

One side effect of the breakthrough pain relief medication is that it makes Harry drowsy, agitated and intolerant. During the afternoon Harry had another nurse take over, this time from the continuing care provider (health). Harry couldn't warm to the lady that came and wouldn't let her do anything for him. This obviously provided me with no respite. When the lady left she said that she felt Harry would be better off with having 2-3 carers working with him, so he could develop trust with them. I explained that I have been trying to get this for the past 18 months, but I am always told they cannot achieve this. It makes me realise that it is not a needs led service, but a service delivered by managers that frequently have no in their vocabulary, whom are alien to creative service provision, hence providing a service led service. This is no good to us carers trying to get some respite and causes more problems than benefits having so many different people involved. There have been many policies over the last 20 years and  it bothers me enormously that with the recent cuts in budgets, service provision can't be maintained and delivered to really help those in need.

Anyhow, back to Harry! Generally, Saturday was not a good day, Harry perked up a little when his friend came round and they watched 'planes' the movie together, though Harry was very tired and teary at times. He enjoyed directing us from the sofa afterwards when we got the duck tape out to redesign his 'purple' chair! It is red, yellow, grey and purple now!

Saturday evening I notice again that Harry had, had no urine output during the day and so I set to again to unblock the catheter. I manage to do so, but by 10 pm no more urine had passed, so it was clearly blocked gain. Paul and I both attempt to unblock it and we both fail, with the pressure being so great that the saline solution from the syringe coupled with a bit of urine spurts out everywhere! We surrendered and called the mcmmiln nurse, whom came out an hour later and unblocked it.

We thought great, but it was blocked again in the morning. Due to Harry's pain relieving patches being increased he slept in, when he woke paul had gone to work. Harry had opened his bowels in bed and it was evident from the urine he was sat in that the urine was bypassing the catheter and was trickling out onto the bed. I call the McMillan nurse, whom arrives around 10.30 am. However,  awaiting for him to come I realise that I can't move Harry, he wants me in His room and Callum wants me too. I get torn and saddened that I just couldn't meet the needs of both my boys and so a friend came to my rescue and Callum went to play with his best bud -  Fin.

The McMillan nurse changed the catheter  as it has been blocked so many times. To do this though I had to give harry a small dose of sedation medicine - midazolam  to calm an agitated Harry. This made the task painless and easy. However, Harry was drowsy for the rest of the day, but at least his urine flowed!

I think we are going to have to take Harry to Martin house as I feel he needs more input than we can give him and we don't have an adequate support package set up to meet his care needs. 

Things are very difficult. I know this is the beginning of the end. How long, nobody can say. Harry's comfort is what is paramount  now.