Tuesday, 25 March 2014

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! 

Wednesday, 12 March 2014


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!