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! 

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