Went to sunny Birmingham today and saw one of the surgeons who’s really happy with Daisy’s progress except she’s lost weight so we need to fatten her up before the next chemo which should be 18th April if all goes well. She’s had a mixed week with some tummy pain and a wasp sting! Apart from that we’ve had lots of time in the sunshine, been to the pet shop and bought absolutely everything for the new puppy, who Daisy has named Fidget after one of the 101 Dalmations, and we have planted a conker tree in the new field.
We had a deflating conversation with the Oncologist yesterday who said we will definitely have 2 more chemo to finish off Daisy’s treatment. Because the tumour’s so rare there’s no evidence he can look at that can enable him to let us get away with finishing now. He assures us the operation went as well as possible but the protocol says 6 chemo so that’s what we’ll have. My hopes were up that we might be finished but obviously we can’t bail out at the last hurdle so all being well we’ll be done for mid May. This means that Daisy will have 5 weeks of recovery before we go on holiday. Yes! We ARE going on holiday. No matter what.
Good news is that Daisy has had her last enteral feed and the NG tube is out; totally stress free and painless which means she gets to enjoy an ordinary diet again so is starting the day with a bacon sandwich; happy girl. Other good news is Daisy is massively excited about spending the weekend at Granny’s with a little visit in between to some small people for the first time as Harry and I are hosting a much needed jolly (annual reunion) with pals this weekend. After a rubbish day yesterday I’m sane again today looking forward to a lovely couple of days off starting this morning with shopping and coffee in Ludlow.
We’ve had an amazing day. Jayne brought the cutest puppy to the house this morning for a couple of hours to cheer Daisy up. She had the biggest smile on her face, still has – and so have I. The little creature fell asleep in my arms and snored loudly. We were just totally besotted. The puppy belongs to Jayne’s father, Ray Wassell who has offered to gift the puppy to Daisy as a get well present! What can I say? So generous, so wonderful for Daisy; she can’t believe it. Jayne said everyone has just wanted to do something for her that will make her happy so we officially have a new addition moving in on Good Friday. If we get the news we want tomorrow morning, that’ll be the icing on the cake.
We’re told there’s a possibility that only one more chemo will be needed when Daisy has made a full surgical recovery which should be in a few weeks time, after which, Daisy’s treatment will be over. Our oncologist has assured me there will be no u-turn on this. The final decision will depend on the outcome of their MDT next Monday when they’ll discuss the pathology report, ie what they actually removed, its form and the margins (what they removed around it). Whatever their plans are, we’ll be informed next week at the hospital.
The doctors were all happy for us to leave hospital this morning and continue with Daisy’s new ‘special’ food routine at home so things won’t quite be normal yet but being back is just brilliant. Dad’s mown the lawn, guinea pig is back off holiday, things are actually growing for once in the garden, someone’s finished the fencing in our new field, the house is tidy, piles of cards and parcels to open and I’m about to get hold of the dogs and wind them up in a huge way. If my back allows it I might even ride my horse in the morning.
Thank you to everyone who came to the hospital; not everyone’s cup of tea – not really mine either. I hadn’t expected visitors at all due to the environment and the sheer awful state Daisy was in but the support was so much needed. Whatever happens to us from this point onwards we can say with total confidence that we got Daisy through it so there’s no room for rumination now or in the future. My councillor would be very happy with that statement I can assure you, particularly as I mean it. Daisy is obviously from good stock (my side) and has been utilising high levels of stubbornness and determination that have come in pretty useful at an early age. (Dad once said that being married to Mum was like being handcuffed to a goat). Poor Mum!
It’s so important to say also that having been talking to other parents on and off the ward and spending some time in the Chapel reading people’s messages and prayers that there are so many kids in that hospital today who just haven’t got luck on their side. The medics are highly skilled but I am positive that there is a large element in life that you get what you get. I’ve said all along that we have been fortunate within this situation and it’s not because I can’t see the wood for the trees, it’s totally true. Some families having been living at the Ronald McDonald House next door to the hospital for over 12 months and are from as far away as South Africa. The children that have undergone liver or bowel transplants are also stuck in cubicles whilst they recover which is an isolated and very long recovery period for them, their parents and their siblings. We have been in for 12 days, had a tumour removed and come home. Most of the events during that time have been ghastly and memorable to say the least but there are kids going through it all the time and they don’t even have an ‘end’ date to cling to. Our end date could be less than a month away and if we’re lucky it really will be the end of a 5 month episode in our lives.
The transformation in Daisy between 4pm yesterday and 10am this morning has been quite unbelievable. She tollerated the ‘evil physio’ putting her into the dreaded chair for the 4th time. This is something Daisy really loves being in but just can’t bear the thought of getting into it. She then put up with a barage of more vile procedures but there is no doubt that they’ve given her the huge leg-up she needed. After her first pain free, undisturbed night’s sleep in a clean, warm and comfy bed she had a bowl of Shreddies which is her version of a really good fry up. I left the ward for 2 hours and by the time I came back she was up, dressed and walking around the ward minus most of the tubes, dressings and cannulas. We’ve been upgraded from HDU to the main ward and the rule is that the closer we get to the door the closer we are to escaping. She’s on a special diet for the next 6 weeks and has enjoyed everything given to her so far and her body seems to be coping well with it. The surgeons are happy. Mr Sharif pops onto the ward pre and post theatre every day and wanders about chatting to people in a casual manner that makes you think he’s either someone’s relative or just lost. Daisy gets to go to the gym in the morning now she’s made amends with the physio.
Medics are happy overall with how Daisy’s doing. First 48 hours was particularly difficult mostly because we lost the epidural early on. Yesterday afternoon saw a really big turning point in that the physio came and helped Daisy into a chair for an hour; a massive mental and physical manoeuvre. We managed to half the morphine and ketamine which means the first signs of the Daisy we all know have started to emerge. ‘Tube food’ started last night with success but unfortunately the nasogastric tubes both were pulled out in the night despite being stitched. At least one of them has to go back in this morning.
The kindest messages of support are just piling in from unbelievable sources which I’m finding hugely comforting. Anyone who knows me will be aware that I turn into someone else without any sleep so keep them coming please. Apparently a friend of Aunty Mary’s who is in Israel, lit a candle for Daisy on Wednesday in Galilee and a friend of Rosemary’s had the congregation praying for Daisy in Oban Cathedral on Sunday. Daisy needs this and more at the moment
The surgeons said Daisy coped very well throughout and the outcome was the best they could have hoped for. It was, after all, encapsulated so they’ve got it all out with minimum margin. Only the head of the pancreas was removed so she will not be diabetic. The spleen is untouched and the remaining parts of the Whipples procedure they carried out as planned which means some of the stomach, the lower part of the bile duct and the gall bladder have been removed. They found the tumour had made an impression on the vein so we know Harry’s persistence for more chemo before the op has made a huge difference to the outcome.
Daisy is going through an unbelievable experience at the moment and yesterday was as joyous as it was frightening. The day consisted of starting the day having ‘slept’ in my clothes followed by taking Daisy and ipod to theatre, tollerating Harry’s tantrums in the shops at the Bullring (cost of things wounds him), finding some serenity in the pub with Aunty Claire and Dawn only to be thrown back into panic mode by a call from the hospital asking us to speak to the surgeons. They said it was likely to be a 10 hour op and it’d only been 4. Another vile experience of being ‘put’ in a room while we waited for them and then total relief came after a short conversation. This was quickly followed by an hour in the recovery room which was ghastly. Unless you’re a medic there’s no way of knowing what to expect but I knew it was the moment I’d dreaded most in this whole process. Now it’s over that’s the last time I’ll say it and will endeavour to forget it.
Once again, Daisy has understood and accepted everthing said and done to her. We have the rest of a really difficult week to get through for many reasons but as we stand at the moment things are looking incredibly positive. Harry, has read books leant over Daisy’s bed and we’ve been doing everything we possibly can to make her more comfortable. When she woke up she asked for spaghetti but that’s a few sleeps away yet.
Unexpectedly we’ve been allocated a room at the Ronald Mcdonald house next to the hospital which is already making our time here so much more bearable. Getting sleep – in a bed – is utter luxury. The facilities are superb. 2 Happy Meals this week, and they won’t be the last, have paid for some of it so I’m happy with that.
We’re swapping shifts now. If anyone wants to visit us, Daisy or our flash hotel we’ll be happy.