Wednesday, 26 June 2013

Wednesday 26.6.13

Well what a difference a week makes!
Harry has been to school Monday and Tuesday afternoon this week. Last week I wasn't sure if harry would wear his uniform again! We stayed at Martin house till Friday.
Harry was so spaced out last Wednesday, he could hardly focus his eyes, but was determined to be busy and had me up at 6.30am to do lego with him! He was so busy all morning that by lunchtime he was exhausted, but he was so reluctant to give in to sleep! I had to lie next to him in bed and hold his hand and give him permission to sleep in the end, and he slept for several hours!
As said in my previous blogg the doctors at Martin House were able to play around with his medication. He was taken off morphine as it wasn't agreeing with him and swapped to oxynorm another opiate! The morphine had to work its way out of his system for him to become more alert!
Last week was so very hard. The doctor at Martin House included us in all discussions around his medicines and also told us that although hard to predict and gauge these things, in their experience it seemed that the disease was spreading fast throughout Harry's body and timescales looked like weeks rather than months left. The way Harry was last week I had come to that conclusion myself and wasn't even sure if Harry would come out of the hospice. I could accept that, as he had very little quality of life last week and to see him, in pain and agitated isn't how you want to remember your son. Therefore last week I was prepared to lose him sooner rather than later, to minimise the pain for him. With this acceptance, goes hand in hand the acceptance that trips out will end. So much emotion I can tell you!
I was listening to Jeremy Vine's show this week, which had a section on end of life care and I could totally identify with it.
In March this year, we were told that although hard to predict Harry's life expectancy, he probable had just months left, based on how prevalent and aggressive he has had the disease. Therefore based on this info, Paul goes on sick at work and I decide not to go back to work as planned in May this year. We concentrate on creating our memory box and giving our boys the best time ever! We have certainly achieved that! However, you can't keep living each day as if its Harry's last, as there is only so much energy and also the day to day stuff at home gets missed. Getting Harry to school has been a goal of ours too.
Therefore, as Harry is well for a week or 2, we slow down and do more mundane things. However, Harry then needed morphine to help with the pain, so we decide to flit to Filey, which was the best decision ever, as we had a fab week. Since then, Harry has needed his pain relief increasing at an astronomical rate, leaving us thinking the very end is in sight!
This week, dare I say Harry seems to have plateaued again. From his blood test last Friday it does not seem that the disease has spread into his bone marrow yet as thought. His x ray did show up further hotspots of cancer in his legs and pelvis and this will have caused him further pain. A radiographer looked at this x ray yesterday and felt one zap of radiotherapy would help his pain. As a result we have visited Jimmy's in Leeds today and Harry had a CT scan and tomorrow he will have one zap of radiotherapy. This may, or may not help, but in the consultant's experience
Radiotherapy can help with pain management particularly when cancer is in the bones.
Harry is not keen on having radiotherapy, he said earlier in the week, that he doesn't think his legs will get better, I never want to lie to Harry and so I agreed with him. We had a chat about how this made him feel bad and how sad I was, then he got on with playing.
Having had this conversation I am not going to lie and say that radiotherapy is going to cure him, but said it could make him better long enough for him to enjoy more days out. He still didn't think it was worth pursuing, so I asked him, if he had a dog that had poorly legs and the vet said that if he gave the dog some medicine to make them better, even if just for a while, would he agree to the vet giving the medicine? Harry thought the dog should have the medicine, so I said, that mummy has consented to him having medicine to try and zap some cancer cells and help some pain go away. We had a cuddle, then Callum and Harry resumed normal play, dancing around the kitchen, creating chaos, whilst I cook tea! Brought a smile to my teary face!

End of life care is such a strange thing. We go from accepting harry will die more imminently last week, to seeing Harry's determination shine through this week; his medicines were tweaked again at the weekend, obviously creating a good cocktail for Harry! Harry's smile can be seen again and we can hear his laughter!
This is going to sound exceedingly selfish, but in many ways I don't want Harry to live for months. The emotional rollercoaster is exhausting; financially I don't know how we will manage if he lives say beyond Christmas. In some ways I thought if he dies in the next few weeks, then the hospice is quiet. Come the school holidays it is booked up with respite stays and it'll be busy! If Harry dies in the next couple of months, then we can afford to have a couple of months off work the other side to grieve Harry and try and get to grips with the events since Harry was diagnosed in November 2011.
I will be forever the planner! Though I am so very much trying to take each day as it comes, which I manage mostly, but when faced with death I guess I try and put a positive on even the most grimmest of events, ie when it is convenient to happen and the benefits of Harry dying sooner rather than later.
The thing with death, there is literally no predictability to it. When i was pregnant with harry, he arrived 2 weeks early, a lovely surprise! Callum arrived 10 days late and i found not knowing which day he would arrive hard,as I like to be in control, but i did know that come day 14 i would be induced. In out situation now, Harry could last weeks or months, it depends on how quickly and where the disease spreads to. However, Whilst Harry has a smile this week and has quality to his life again, I hope this never ends. Our finances will sort themselves out! If we can squeeze a bit more fun in and keep harry pain free, then that is what matters the most!

Wednesday, 19 June 2013

19.6.13 'the big Society'!

I wanted to add that having been brought into the situation that Harry is in, how informed we have become of the existing 'big society'. David Cameron seems to think he is creating this 'big society' and has been moving resources previously paid for by the government or council to the third sector (charities). Thus moving the cost of providing services further onto communities to help fund raise to pay for them!
I wanted to highlight that already we have been supported by the organisations of:-
Clic Sargeant
McMillan nurses and
Martin House Hospice

To name the big ones and these have been in existence for years, providing valuable services and they are all funded predominantly by donations and not the government.

We have also been overwhelmed by our work and local communities in the efforts people have gone to, to raise money to enable us to continue taking Harry out, to create our memory box!

People have also been very generous in providing their time to organise events that Harry has enjoyed attending and that have financially benefitted him. We know that we won't be spending all the money raised on Harry as quite simply I don't think he is going to be here long enough, but we will continue making that memory box, which may be now about buying things he can do at his bedside such as lego and air fix models! We are also acutely mindful of Callum and when Harry has died we will be treating him. We mustn't forget the toll this has had on our marriage either and we will need treats too.

People have also provided their time in showing Harry around places, such as Embsy railway and Diggerland. Such experiences have provided such fun and memories too.

I also love the Community of Otley. Within minutes of putting a request on Facebook's local site for books for children age 5, for Martin House hospice, offers came in abundance and a friend is going to collect them for me too!

I am trying to highlight that 'the big society' already exists and communities already pull together. When I have the time I will write to David Cameron!

Having a child with a disability has opened our eyes to a world many know nothing or little about. The challenges, the strains, the courage it takes to keep putting one foot in front of the other and carrying on can be emotionally exhausting. The organisations and the services provided not by the government, but through the donations of all you lovely people really do make a difference!

19 th June 2013

Harry made it to the carnival! He had the best seat in the house, in the front of a bike. See picture below! When it hailed he had shelter and stayed dry unlike the rest of us! The Whartons won the overall best float, which was brilliant. So glad we could be a part of the carnival and the big win!
Sadly Harry has deteriorated since Saturday and we had to give him quite a few breakthrough doses of morphine over the weekend. Harry ended up being so agitated Sunday it was awful to witness. The morphing made him itch madly and contributed to his irritability and it was evident we were not on top of his pain. We felt unable to manage him at home so we chose to get him into Martin House Hospice.
This was the best decision ever, he is being frequently assessed and monitored.
The grounds are fantastic and he managed to play for hours on Monday with his friends and brother who visited. Callum if course missed me as I had stayed over with Harry and we are back to managing and juggling the needs of both our boys.
Callum could stay here, but whilst Harry is so up and down we have decided that its best Callum doesn't stay. He's been in nursery and last night Granny and Grandad had Callum to stay, so both Paul and I could stay at Martin House. Particularly as it was Paul's birthday!
Harry has had to have his pain relief increased again last night. His medications are being tweaked to try and get on too of the pain and reduce the side effects. We are not there yet, so he will remain here a bit longer.
The trade off of trying to manage his pain, is that he is a bit confused, grumpy and spaced out.
In truth we think the disease is spreading rapidly and I fear I have lost Harry as we truly knew him as the drugs take over.
We have agreed to get his legs x - rayed to try and get a better idea of how the disease is taking shape and if radiotherapy may be an option for pain management.
His bloods were taken last week and his platelets remained at 55. They have never reached the magic 75 to be able to consider any more chemotherapy for Harry. A decision that was thankfully taken out of our hands.
Getting Harry comfortable is a priority at present.
We have now reached the significantly hard part of this leg of the journey and it is truly heartbreaking.
The balance of drugs to relieve pain and the trade offs these present.
I will leave you with some lovely pictures to cheer you up after you have read this!

Friday, 14 June 2013


Harry is fairing better today on his double dose of fentanyl patches. Lets hope he can make it through the carnival tomorrow. Harry and I are clowns!

Here are some pictures for our holiday in Filey!

Thursday, 13 June 2013

It's international Neuroblastoma Awareness week!

Neuroblastoma only affects 100 children a year in the UK, so little funding is put into research into this horrific disease, thus survival rates only being about 30%. Those that do survive live a lifetime of fear of relapse, or having a secondary cancer or waiting to see what side effects materialise as a result of the multitude of treatments.
Please make others aware if this disease that we had no idea about until 12.11.11.
Harry is fading from us. His morphine patches have been doubled tonight to provide further pain relief.
Our beautiful son is becoming tired and irritable from the morphine. It's a long hard road to traverse.
I am so glad we went to Filey last week, the best decision ever. Harry may stabilise again, but each upping of the morphine, means the disease is progressing in Harry's body and he is ever closer to being taken from us!
I am scared about the end, I just don't know how I will ever say goodbye to Harry and never see him in the flesh again.

Tuesday, 4 June 2013


Well last week was a very emotional week for us. We had to come to terms with the fact that Harry has commenced morphine. Initially the morphine made Harry lethargic, irritable, itchy, gave him constipation and he found it hard to wee. All these side effects means more medicine. I am becoming a cynic as I really do wonder if drug companies don't work hard to refine drugs and prevent the side effects as the more drugs someone has, means more money to them.
It was half term last week, so we had plans! We kept Harry topped up with oral morphine and ploughed on.
The morphine helped Harry still walk, which meant we got to Diggerland! We had a fabulous time there. Definately recommend this place and once a child reaches 110 cm they can drive/operate everything, from JCB robots to diggers of varying sizes! There are cars too that the children can drive. Callum loved this, he is just over 1m. There are rides too. Spin Dizzy was a favourite! All rides are made out of diggers, so it really is a digger fest! The park is quite small compared to other theme parks, which means there is not huge ground to be covered and its easy to go backwards and forwards between the rides. There were no queues either, which is rare to find in half term. Picnics could also be consumed indoors next to the indoor play area, so huge amounts of money does not have to be spent on overpriced food the kids probable won't eat much of, just to sit inside! So a big hit with us! We will be back.
The day we went to Diggerland was also our 10 th wedding anniversary! I had anticipated Paul and I going away for a romantic night or 2, but with a child who has relapsed and has just commenced morphine, leaving him is not an option at present. One day we will have a celebration to make up for the birthdays and anniversaries we have had whilst Harry has been in hospital or poorly. However, to see smiles at Diggerland was lovely and heartwarming, when we are in unknown territory and the day Harry commenced morphine, I truly thought our days of fun were over!
Last Friday, Harry commenced fentanyl patches. These release morphine at a steady and even rate and get changed every 3 days. Side effects are less too. Though Harry remains on lactulose and an antihistamine to prevent side effects. Since the fentanyl patches has worked into Harry's body he has had much better mobility.
The fun hasn't stopped as feared and we managed to visit Paul's friends' whom have a caravan by a lake and have jet skis! Harry went on with his dad and loved it. Callum went on an inflatable crocodile behind a jet ski, which he loved too, he was temporarily stunned when we fell in the cold water, but Callum has such spirit, he got back on and enjoyed the rest of the ride! Though, he didn't want to go back on again and preferred playing pirates at the waters edge for the rest of the afternoon! Dad also loved the jet ski and I had a short go too!
With the knowledge that Harry has commenced morphine, not knowing how long we have left with harry and a forecast of sunshine, we decided to flit again, this time to the seaside at Filey!
The right decision as we have managed to get on the beach and been rockpooling, which the boys always love! Friends have visited too as have my parents and Paul's parents have brought their caravan here for a few days too! On Monday we all went to for a walk on Filey Brigg, a very scenic landscape, that was showcased by a blue cloudless sky! Harry managed to walk too! We even saw a seal in the water!
Our rollercoaster of a life continues, with such peaks and troughs, its very tough at times. Last week I thought Martin house hospice would be a destination needed sooner rather than later, this week I am more positive as Harry still has quality of life and his pain is under control, which is the main thing. Harry lost his sparkle last week, he looked pale and unwell, but this week he has colour in his cheeks and mischievously, sparkly eyes!
The seaside really is a therapeutic place!