So after such a lovely day at Chepstow on the Saturday it was fair to say Hannah’s body hadn’t enjoyed it as much as her heart had, though I must say I was a little worse for wear too after being strapped by my arms to a stirrup loop! But oh dear did her whole body ache and groan that Sunday, Monday and after that. Not fair is it when you enjoy something so much yet get punished for it is it?
That Monday Hannah’s right foot started to swell when she was seated so her Mum and Dad thought best to call the hospital. When we got to Bath RUH they decided it would be best to do an early scan, especially due to new pain she was experiencing. She wasn’t due her proper scan until the end of the month after a third lot of chemotherapy but due to the severity they thought best for an early MRI scan. She underwent an excruciatingly painful scan as lying on her back has become so difficult – that tube never gets any less scary for me let alone her anyway. One of the images even got blurred where Hannah had to move due to pain and was no longer able to stay still! Even then they couldn’t tell us anything as apparently the scan had been done at different angles – great. They did nothing towards Hannah’s pain or foot either and just told us to come back the next day for bloods and platelets transfusions as they were very low.
So back again Tuesday, 3 lots of blood and some platelets later and they decide to use a special ultrasound to scan Hannah’s leg and abdomen for a clot that the tumour had formed a while ago to see if this links to the swelling. I know Hannah was really worried about this as if it has dispersed it is very dangerous to the brain or heart. Fortunately it hadn’t moved! So foot swelling – a mystery! She also had a CT scan to check her lung tumours too. They changed her painkillers but I must say I’m dubious…! We stayed that night in the RUH to monitor the pain.
Dawn Wednesday and some bad news… Hannah’s tumours aren’t responding to the chemotherapy and have grown larger not smaller. We are devastated and a new plan is needed. Hannah was transferred to Bristol today as they make her new plan of treatment but even now they didn’t realise how serious it was.
Thursday pain still unsubdued and Hannah’s oncologists reveal a bit more. The tumour in her pelvis has invaded into the spine – no wonder for the increase in pain and trouble lying and sitting… Hannah didn’t know what to say, a bit like the first time, but I could tell it was hard to hear. Hope is slowly getting smaller and the chance to beat this crap seems less and less. But we are determined. So, next thing, new plan; radiotherapy and chemotherapy. Osteosarcoma is known not to respond well to radiotherapy but it is worth a shot and a new course of chemo will be a second chance! Surgery is no longer an option. Hannah and family were desperate to tell Sam so allowed home Thursday night and it was very hard and emotional evening.
Friday Hannah had her set up for radiology and some little tattoos made on her tummy for the beams. The metal board is a painful place for lying but I hope I provided Hannah with some comfort. We then stayed through into Saturday as Hannah started her new chemotherapy for six whole days – a very long time to stay in hospital, especially when you are in pain and looking at four white walls. It turned out Hannah had been having too little a dose of new pain meds so no wonder she was struggling too!
We began at 12am rather than 10am but that didn’t really matter. It’s super hard having all those wires wrapped around Hannah but she deals with it so well. I think we are gradually getting used to it! Come Sunday the pain people have returned as the pain really is getting ridiculous now. They fiddle a bit more so we will give that a go. Hannah had a couple of other visitors today too which was nice to have some fresh faces.
So Monday Grandma and Hannah’s mum discuss another type of therapy called proton therapy with the doctors as they really are desperate to make the best choice to save Hannah. Proton therapy occurs abroad and is somewhat less invasive than radiotherapy but only minutely as there are fewer side effects. It works in a similar way but is obviously more expensive as you have to travel to America to have it. Her Grandma was particularly keen for this type of therapy but the doctors disagreed and felt that Hannah would not meet the guidelines required to have that kind of treatment. So it seems the question was answered and all were in agreement however it was an interesting set of debates as for whether this would be a good treatment for her osteosarcomas.
Now Tuesday saw the pain team fully increase Hannah’s pain dosage up to 1000mg of background morphine. She had long acting medicine, break through pills and injections to try and get through the day and into the night but eventually she hit a point where this gave her breathing issues and everything became very scary. They could no longer allow Hannah to sleep and she had to be kept awake. She was floppy and dopey and her speech was slurred, it was all very shocking. Her Dad was called in and a reversal drug to counteract the pain killers was administered however Hannah’s breathing would not improve. She was physically exhausted and so tired. But she had to stay awake. Even when they played a game to keep her awake the breathing only got worse – totally frightening for everyone. Finally after even more reversal meds she hit rock bottom but the intoxication had been stopped. Hannah told me it was the scariest moment of her life as she felt totally taken over by the drugs, she couldn’t see or hear anything but buzzing and felt hot and faint and out of control. Her chest was on fire but Mum and Dad holding her tight was what got her through. She is so grateful to the incredible team in the TYA at Bristol Hospital for looking after her like they did that night, they were just amazing.
So Wednesday was a day of complete rest and recovery from the night before. She was monitored all day and finally her breathing was back to normal by the evening. That night we slept like babies (that’s both of us) even with two hourly observations that night! Through into Thursday and finally her chemotherapy and hydration has finished. We’re all still sad and emotional especially due to being so tired and the pain is starting to creep back as Hannah has been unable to have any painkillers for a few days to flush her system. But they start them again Friday morning. Today we started radiotherapy for the first time too. All very nerve-wracking and scary, especially as lying on the hard board is particularly hard for Hannah but we have to think this has got to help or at least give it a go anyway. Friday was a terrible night for sleep due to pain so Hannah was so glad to finally start a much lower back ground dose to see if it worked that morning – and it does! Hallelujah! Although the second radiotherapy was equally painful too it’s just one of those things to work through that will hopefully get better not worse. The best bit of all about Friday though was that we got to go home for the weekend and Hannah was delighted! Totally over the moon and I tell you what, we had the best time too!
So again I’m sorry it’s been a while but as you have just read, lots has happened and it’s a little hard to keep you up to speed 24/7 - even though we really wish we could! Thank you so much to everyone for their kind and supportive words over the last two weeks as we really couldn’t have done it without you. More updates soon!
Lots of love
Willberry and Hannah xox