Saturday, 26 October 2013


26.10.13 a quick update

Harry has been doing ok since my last blogg. Intermittent pain, but nothing substantial until Thursday this week.
Harry was really struggling with the pain. I gave him breakthrough oral pain relief before school and due to it not helping him really, I asked school to administer more at lunchtime. However, it was not hitting the spot. The breakthrough pain relief makes him irritable and teary  and school ask me to pick him up at 2 pm.
Upon getting home, we make buns for his year 1bun sale on Friday. He then plays happily with some new playmobil he bought from his birthday money. Pleased it had arrived through the post!
However, the pain got the better of him and by tea time he was a mess. In pain, agitated, teary and he fell asleep after his tea at the dining room table watching a program on the iPad.
We expedit getting him to bed and he zonks out.
I had contacted my Mcmillan nurse several times to inform her about Harry's pain as there was a big multi disciplinary team meeting that afternoon, whereby they were going to discuss Harry's scan results and scan report. I knew a radiologist would be there, so it was important they had an up to date picture ofHarry.
My Mcmillan nurse spoke to me thursday evening and gave me information on the scan results. The scan showed that the disease has not spread anymore in his upper body than when he was last scanned in march. However, the cells had regrouped in his pelvis and upper left femur. Due to this the radiologist had felt more radiotherapy would be of benefit and a slot had been made for Thursday next week.
We were due in Friday to speak to our consultant at more length, but we had the basic facts.
I felt sick at the thought of putting Harry through more radiotherapy realising that the whole of November will be taken up with Harry being intermittently sick.
I think I thought the results may have shown more wide spread disease in his upper body and that it may be that radiotherapy was not an option, due to the disease being too far advanced. Basically I was being told that the picture looked very much how things were in June, when Harry last had radiotherapy.
Many people would think we would be pleased with this result, however I felt helpless and exhausted at the result, because despite having some good times since July, it has been very hard still to manage Harry at times and it hasn't been plain sailing. 
The thought of trying to manage Harry for more months at the same intermittent level of pain I found heartbreaking. 
I feel like we are treading water with our lives. We have a couple of good weeks and then Harry has pain or sickness or the pain relief medicines effect him. It's all a fine balance. I feel so much for Harry too. He such a brave boy, but I feel like he is going to have a long prolonged death. Seeing him in such a state on Thursday felt so very hard. To put him through more radiotherapy and make him sick again, doesn't feel right, the alternative doesn't feel right either:  to not treat him and have him in pain with his leg for weeks/months upping pain relief until he is comatosed, waiting for the disease to spread and actually kill him. 
We go to bed Thursday night feeling uneasy, unhappy, sad, that deep gut wrenching feeling that makes you feel sick. Decisions, decisions. I see pictures on the wall of Harry smiling, I so wish this wasn't happening and we could be that 2.4 family, getting ready for Christmas with only the usual ups and downs. 
We head down to LGI on Friday. We meet with our consultant and McMillan nurse. We decide the most humane option is to give Harry radiotherapy. We discuss different anti sickness medications that could help him afterwards. Since the disease is more wide spread than before, the radiotherapy may not hold the disease for as long this time, meaning we could be back in exactly the same position in a couple of months. However, radiotherapy could mean we have a fab December and Christmas to remember. 
I also discuss trials in this country of which there are some. These are phase 1 trials. There is only one trial at Leeds, a combination of different chemo therapies.  Harry's counts are not good enough unless he has disease in his bone marrow, which from his blood counts we think is unlikely. Our consultant says the trials are only likely to slow down the progression of the disease not cure him. For each trial so many, many tests would be required. There is MIBG and LUDO treatment in London that involve forms of radiotherapy too. Again they would involve many trips to London for tests before eligibility is confirmed. Currently Harry's blood counts are too low for their usual remit anyway.
It seemed that radiotherapy at Jimmy's was the best solution, only 2 more tests, an x ray and a CT scan and we had previous knowledge that it benefitted him. It has been 4 months since the last dose, so a respectable time frame to illustrate that it was of benefit.
Having made decisions, we head to x ray to enable  Harry's left femur and pelvis to be examined. The disease can cause wholes in the bone or a fracture and if this was the case radiotherapy would prevent the bone healing. We potter down to x ray, but just as we are about to leave we are called back to see our consultant. 
We are told that Harry has a hairline fracture in his left femur above his knee, but below the disease! The fracture is not knew as it has started to heal and is probably from 2 weeks ago! Thinking back, that's when Harry's pain started again! Unbelievable!
We await to see if Harry needs a pot on, but as it has started to heal they decide against this! Harry has been given a walking frame to get around on and we have the buggy still.
Everything is on hold re radiotherapy as it will prevent his bone healing. We will assess things again in 2 weeks when orthopaedics have reviewed him! We need to see if the majority of the pain is from the fracture and not the cancer as if this is the case, radiotherapy will be on hold. We pray this  is the case and as the fracture heals the pain goes for now.
We also have the possibility of a day trip to Lapland in December being on the horizon and this makes us eager to try and get Harry good again, even if we only get weeks of him being good.
Best get some passports for the boys then! 

Wednesday, 16 October 2013

16 th October

Well we decided to live and it felt great. We began to make plans for half term and think about Callum's birthday and yes, Christmas, then it's like a record being scratched! 
Harry was doing most splendidly on his new patch, we had the old Harry back. So alert, his memory was brill and his ability to concentrate awesome! He improved vastly as a consequence with his reading, woke up around 8-9 am, in school earlier etc. the smell of hope and an even keel was immensely delicious! 
Then last Thursday Harry awoke with pain in his leg. It was this Date exactly 2 years ago that Harry awoke with pain in his leg and signified the beginning of this turbulent rollercoaster that is cancer. Harry went to school and managed ok and was fine after school too, enjoying showing his hamster Joey off to a friend. However, at bedtime Harry was in tears with pain in his leg. I had to commence oral morphine to help with the pain.  Intermittent pain is how it always begins and our hearts are in our mouths again. Harry slept in Friday, he awoke with pain, he was limping and a different sole to the one witnessed only hours previously. I gave him more breakthrough pain relief and he went to school. We went to ikea to try and look at beds for the boys rooms, but I couldn't stop thinking about Harry. I contacted our McMillan nurse and we decided if pain persisted over the weekend we would increase his patch. I also felt the scan was more urgent to give a good picture of what was going on and whether any more radiotherapy is viable.
Our McMillan nurse as ever, made several phone calls on our behalf and we have a scan booked for tomorrow (17th oct).
When I collected Harry from school on Friday, he had been given a certificate in assembly as he was the star of the week for being kind to others and sensible! I asked Harry how he was at pick up and he said he had been in pain all day, but despite the pain he had, had a happy day! He makes my heart melt!
I gave him more oral morphine to help with the pain and decided to see how he was on Saturday. Cycling club has moved to Saturday mornings as its getting dark much earlier on an evening now. I wasn't sure if Harry would be up to going, but he was so very determined to go despite limping and he himself said that it didn't matter if he left early!
The session was 90 mins. At half time Harry showed no signs of giving up! However, 10 mins before the end he was exhausted and tearful. Some of the other parents commented that they never saw him fall to initiate him crying. It's times like this when I want to shout that he has cancer in his bones, so he doesn't need to fall to be in pain. Harry had actually done amazingly well and had been competing in a race, whereby his team was second!
Once home, Harry was very tired and limping, so I leave instructions for Paul to increase his patch. Since the patch takes 12 hours to kick in, I gave him oral morphine to help ease the pain in the meantime. 
I usually undertake all medical procedures, but I had a date with Jason Donovon, whom was starring in 'Priscilla Queen of the Desert'. It was a fabulous production and the music had us dancing in our seats! One track was 'Raining men' by the weather girls and it took me back to my previous night out with some year 1 mums, where I did a cracking rendition of the same track myself in 'The Rose and Crown!' Though in all honesty having had a few too many to drink it was probably 'arse about tit' if you excuse the expression! 
Despite turbulent times again I had a really great Saturday, finishing with a great Mexican meal in the new Trinity Shopping centre in Leeds. We had a tapas, a couple of glasses of vino and added to that was great company, just what the doctor ordered! 
Harry awoke Sunday with much less pain, the increased patch was working! Yey! However, we are only too aware that those pesky cells are present. Yet, again we feel uneasy.
However, we go to church and the boys enjoy seeing their friends. Harry manages to ride his bike well around The Tarn in the afternoon before joining The Barracloughs for a Sunday Roast. 
A great sociable weekend! 
Harry is doing well on the higher strength patch, but we can see his concentration is affected and so is his memory. It is a trade off. 
I am only too aware how things developed 2 years ago and again in May. Harry started with pain at the end of May, we then had a fantastic week in June, then things declined rapidly and only improved once Harry had, had a blast of radiotherapy. Therefore, having tried to live and not think of death, it's very, very hard again. 
Harry has such huge determination and lust for life. His time on this planet is not over yet. The longer he lives the more people he meets and the more people there will be to feel the loss. Sometimes I wonder if Harry's life is to try and spread awareness of cancer. It should not be a taboo subject, in fact I think it is a disease that we will all be affected by in some way during our lives, considering 1 out of every 3 adults will have cancer.  I would hate to think any child following harry's death thinks cancer always means death, because it doesn't. 3 of my family members have had cancer and beat it! Cancer can be beaten, unfortunately in some cases like Harry's it can't. 
Well, we were in LGI today for Harry to have his lines in his portocath flushed, he had bloods taken and nuclear dye syringed into him to make the cancer cells glow in readiness for tomorrow's big MIBG scan. Harry has to take iodine twice a day for 3 days. It's the first time he's had to take the medicine without an NG tube. It's disgusting and made me retch when I tasted a tiny bit! We mix it with yoghurt and Harry has lots of juice between spoonfalls. The purpose of iodine is to protect his thyroid. In some ways it feels what's the point he is already on a palliative pathway. But if we can keep problems to a minimum then of course we will do our best. Harry is a star, he always will be, the brightest shining one with a cheeky sparkle! 

Friday, 4 October 2013

4 th oct - a little bit more!

As I was with Jan today and she was talking to me about how a child's life can be short, but meaningful I was welling up as believe Harry's life is meaningful and inspirational to others, the courage and fight he has etc. I was trying to remember the phrase I have on my wall at home. - here it is. It's so very true!

4th October

Since Harry's birthday we have been struggling to comprehend how we ourselves move forward. It's 6 months since we heard that Harry had relapsed disease and he's still here and doing well. He's been into school everyday for part of the day and he is able to enjoy life and participate in beavers and cycling club. We are immensely pleased and proud! However - we feel like we are being given a gift that at some point will be taken away. That is the hard part to swallow. Life is therefore bittersweet. 
Over this last week I have been trying so hard to think of life and not death and i feel better for it. We have to think that Harry is going to remain with us for the foreseeable future and think about Christmas being with him and not possible without him. 
Since the last 6 months has been turbulent and at several points we thought we were approaching the end, then yes death has been in our thoughts. 
It will always be there, but as said Harry has now outlived the life expectancy the medics thought he would probably have. 
We have given everything to the last 6 months to make them memorable, quality and valuable. We have achieved this, but now we need to focus on doing the normal things! Just trying to live and not chase the next big day out etc! 
It is the party season as Harry and Callum's friends celebrate their birthdays too! We have a fair few parties taking up the diary! 
We have also made the decision to have Harry scanned again. It will not tell us the future for Harry, but it will tell us where those pesky cancer cells are and could give us an indication of the level of pain Harry would be expected to be in should we lower the dose of his pain relief medication. I think we have a need to know what is going on too. I know the scan is only accurate for the day it is done and the day after who knows what the cells will do. We accept that though! 
Another decision we have made in conjunction with our Mcmillan nurse and the doctor at Martin House has been to change the type of pain relief patch that Harry has been on. He has been on a fentanyl patch since may, but he had never really got on with them. They make him sleepy, he gets agitated at times, it affects his memory and ability to concentrate at school. Sometimes life can be very hard living with Harry. 
On Wednesday instead of putting another fentanyl patch on him we changed it to buprenorphine. He has 2 patches to make a dose of 45 micrograms. This is slightly lower than the 50 micrograms of fentanyl he was on.
Wednesday night was horrific. He managed beavers, but upon getting home he was tearful and agitated. We got him into bed quickly, but sleep would not come. He usually zonks out! I reread the side effects and one is sleeplessness, restlessness and agitation! I felt like we had done totally the wrong thing changing his medication. I had additional anti sickness medication at the ready, as vomiting is another side effect. At 9 pm Harry was complaining of his stomach hurting and feeling sick, so the anti sickness meds on standby got shovelled in!  This makes him feel better, but he was still restless. Come 11.30 pm I ring theoncology  ward for advice. I am given the number for the on call Mcmillan nurse since the ward were not up to date with his current prescription. I resist making the phone call as around midnight Harry finally settled and sleep fell upon him! Sleep was fitful for us wondering what the next day had in store. However, he awoke as bright as a bobbin at just before 8 am wanting to play with Callum in his bedroom! Lovely! It's been a very, very long time since Harry has awoken so early being so perky!
I decided to take the morning slowly and give Harry time to digest his breakfast and medicines in case sickness was an issue, but it wasn't and it was school for Harry for 10.30 am and today it was 9.30 am! We feel hope is there if this new medicine can help Harry feel more alert, wake earlier and have less fog clouding him! It's very early days, but we can hope and pray that these buprenorphine patches can give greater quality of life to Harry and thus greater quality to all our lives! 
With Harry and Callum in school and nursery we head to the citizens advice bureau. We are confused by the benefits system and the fact that Paul has to make a claim to the newly branded employment support agency (ESA). His HR told him  he had to make a claim with regards sick pay from the ESA. Having been on sick and full pay for 28 weeks he has reached his entitlement that comes without assesment. He now has to be assessed to see if ESA can part pay his continued entitlement to sick pay. Apparently there is a period of 13 weeks assessment via ESA and everyone gets £100 a week, this will be deducted from paul's pay from work untill he's assessed and an actual entitlement is decided. When Paul rang ESA on Wednesday having spent 30 mins in a queuing system and an hour on the phone going through questions that included my details too, we were perplexed! You are probably perplexed reading this too!
Thus our visit to CAB. We wait an hour for our 10 minute assessment slot. Not knowing where to begin, I outline the benefits we are currently on, Paul takes over and very briefly explains why we are in the situation we are in, ie Harry has cancer and now he is terminally ill. The worker dismissed what we said by rounding it up as a 'sad story' but asking what did we actually come for! I was gobsmacked! Paul went onto explain about his work and situation re ESA, but the man though saying how the benefit system is factually, made us feel like we were evaiding work. I ended up in tears and told him how he could show us some empathy, how he wasn't being nice, how small he made me feel, how difficult it was for us to come and ask about benefits and how we desperately wished we could work! He changed after that, became more helpful and apologised for his manner at the end. The problem for me, was once I lost my composure I struggled to regain it, realising how close to the surface my wounds are and how vulnerable I am.
The long and short of it is that Paul has to go through an assessment via ESA. His work will save £100 a week whilst this assess process takes place. Paul will get £100 a week from ESA, plus the rest of his contractual entitlement from his work. Once he has his medical he will be very likely deemed fit for some sort of job with low key responsibilities and he will qualify for nothing. Which is ok for now as his work for the remainder of the 6 months left of sick pay will make the money up! It's a bureaucratic process to alleviate Paul's employer of paying in total £1300, but a whole lot of stress added to us! Oh and ESA don't need all my details for Paul's claim, so what that was about I am not sure!
To round up, we are inbetweeners to all systems! Not fitting criterias etc! Grief, physical and emotional exhaustion counts for nothing in the eyes of ESA. If Paul acted up and tried to strangle the medical officer in his forthcoming interview they may believe he is not fit to work,  he may risk getting arrested or sectioning and that leads to ever more paper work and bureaucratic drivel so not a good plan!
We have had our eyes opened yet again to the benefit system. As the new assessment system tries to flush out the work shy we are assured that we will never qualify for sick pay from ESA as we are, as they would deem us able bodied enough to do some sort of work.
Thus it all goes back to those petitioning at present for an acknowledgment from the government that the monumental loss of a child should have greater than the 3 days paid leave currently granted to get over the loss! 
As you can imagine my scheduled appointment to see Jan, the psychologist  at Martin House was very much well timed this afternoon. Having not seen her since July, I think I was a pressure cooker letting off immense steam! Thank you Jan for listening and giving me all the time I needed! 
I will leave you with a link to an e-petition requesting the government to make statutory requirements around the length of time employers and I feel ESA should give for bereavement leave and pay. Hard to put a time scale on it, but the standard 3 days is utterly ridiculous. Mother's are given 9 months statutory maternity leave and father's are given 2 weeks statutory paternity leave on the birth or adoption of a child to nurure, bond etc. When a child dies outside of those timescales 3 days is what is standard paid time off! This has to change!