Its update time. Ive been quiet because its been really tough going. Dasha is unfortunately one of the rare cases where the nerve damage is really very bad. Oxycodone has become our very dear friend and she has had a very tough couple of weeks. The nerve pain is not predictable or consistent other than I know its way worse if she is still - oh sleep - how I miss thee!! The pain is a continually evolving beast that changes in nature but she always always has a back ache to accompany it, in fact - she slways had a back ache. When its bad she is beside herself. Activity makes it much worse. We went to a park on Friday fir the first time in forever for 1 hour and while shes moving she seems in great form - then when she stops - its on!!!! It took until 10pm on Tuesday night to get relief- it was a big mistake to take her out. She was literally in agony. It was horrific to watch, desperately trying to help with no way of easing it for her. The car seat, reclined in the prams normal seated position and sleeping for a few hours is jolly hard work ... and its so much worse post active movement. We will be moving to a nerve blocking drug - (pregablin - lyrica) which I had during my pregnancy, to assist her as the other meds only just manage it but the pain easily breaks through, and the opiots constipated her. In between bad episodes she is a little trooper trying so hard - though she is very jumpy, anxious and a little bit grumpy (and who can blame her). We get our results from her post op base line MRI tomorrow at Westmead. The pain over the last week or two has been so frightening for her father and I as it looks the same as pre diagnosis days so my mind was in a flat spin that her cancer might be back - but I can finally see it is nerve based and after such a massive surgery I think its fair to say - her recovery will takes many many more months. Its sad to see her suffering again when she was pain free after her chemo but given the pathology results - we still believe that surgery was our only option.... And if nerve damage is all she comes out of this whole nightmare with - then I think we will have to find the silver lining in that alone. For me - the fear of the possibility that the pain was cancer was literally paralysing - I couldnt seem to get my head around anything - and the washing piled up, along with the clutter. Some good solid talking with Simmy, along with a good cry helped me put everything into the fact or fear box and I seen to have picked up the fact box and been able to shake myself off a bit and get back to my big spring clean. I took down her cot and turned her room into a playroom which she absolutely adores..... A little retreat where I hear her chatting away to her toys as I shower or do chores. The whole house is getting the once over - its a slow process but its honestly 6 months of organising that Im behind on. Were back in the swing of cooking and life without 2-3 hospital visits a week, and its surprising how quickly normal sneaks back into your life. So - were off to Westmead tomorrow. Im not sure about blood tests at this point but now her central line is out I think its a finger prick every 2 weeks - which Im dreading. I know that sound dumb after all we have been through but it just seems mean. She has started saying I dont want to go to fishy clinic (Gosford hospital) or special play room (Westmead) for the first time. Its like she knows shes clear of that and doesnt want to go back. Nor do we but its something I want to keep fresh and fun for her so making that day special is really important to me. Tomorrows results are something Im not terribly worried about now - simply because its our base line post op MRI so its the first time they have seen the sight since surgery so even if it was growing (which my heart tells me now that its not) they wouldnt know as they have nothing to compare it against. Adhesions is another possibility for her pain but that makes so sense to me as the pain is not during movement but I worried that they might see adhesions and assume its the cancer and do unnecessary chemo again - but Ill ask how they can tell the difference tomorrow. All that said - I honestly feel confident it wont return but when I said it was going to be constant work to manage our fears and thoughts - I wasnt kidding. It is actually sometimes so consuming that I have to manage my fears minute by minute and if shes in pain - second by second. I am however looking forward, with Christmas firmly in my sights - a very special Christmas indeed. I just need to keep her well without missing out on the good stuff.... Like street parades etc. Shes beautiful inside and out - her skin colour is returning, her cheeks regularly go pink when shes warm, shes so robust looking, and tall, her language, imagination and development is out of the ball park - but other areas have not had much chance to develop since her birthday.... Shes desperate for friends, has a crazy crazy imagination and can take on a persona flawlessly (shes going to be in the movies, this kid!), and is loving, kind, funny and always dancing. Her hair is getting thick and is sooo silky soft. Her eyebrows or should I say eyebrow is coming along nicely, her eyelashes are getting long and thick again and have just started curling, and her whole body is covered in little hairs again... Its adorable. Please pray that we can see improvements with the nerve issues outside of the intervention by the pain management team so we know this isnt permanent, please pray her bloods bounce back and her bone marrow gets stronger and healthier everyday, please pray that the cancer never ever ever returns or wakes up, pray that her anxieties can settle down and that her father and I can also manage our anxiety. Please pray for her good health over the coming months until the chemotherapy stops depressing her immune system. Please pray that our results are great tomorrow and I can have all my questions answered tomorrow. Thank you to everyone for your ongoing support, and thank you to our beautiful Simmy for still being in the water, keeping us afloat. Love you.
Posted on: Wed, 29 Oct 2014 13:59:30 +0000
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