Back in hospital, again, as the ongoing infection has quickly deteriorated. As predicted blood counts are rock bottom so more IV antibiotics for the next 3/4 days and a transfusion tonight are needed if we have any hope of getting to Birmingham next Wednesday to have the line out once and for all. Viscious circle in that we need the line but the line’s causing all the problems!! Stu and Jenny get married this weekend and our much anticipated 2 night jolly would appear to be off the menu. Docs say we should go as Daisy will be in the best place and it’s not likely things will get ‘critical’. So comforting.
Daisy’s new private residence (caravan) arrived at the weekend; thank you to Sonja and Mark, again. First it was a caravan that became Arleyfest Box Office and now we have another that’s destined to be the best den in the world. We had some funny looks as we towed the filthy van through Bewdley, with ease after we remembered to tighten the wheel nuts (Mark)! The ‘girls only’ den has now safely arrived and is in the hoo-ha waiting for a serious makeover courtesy of the charity Starlight. It’s had a huge wash and spring clean and is being used purposefully; just needs some pals to put in it now.
Daisy’s off the antibiotics but the infection’s still rumbling (very well in herself). Bloods yesterday say we’ve got away with having another transfusion but the consultant decided yesterday that she may be able to have her lines out at Birmingham next Wednesday which means she may have a ‘top up’ beforehand. Such a significant event. She’ll be able to shower, bath, swim, have piggy backs and get back to being the 6 year old tomboy of 7 months ago.
Finally, I’ve managed to get the opportunity to blog.
Saturday was a totally brilliant day; everyone, including Daisy, was calm and excited about finishing treatment. All the staff, as ever, treat us as though it’s our rightful home and they were obviously so pleased for Daisy. The ward was unusually quiet and our Ward Manager allowed us to bring Fidget in as our room has doors into the garden. Daisy was totally chuffed to see her. Disney also paid a visit to the hospital and left a vast pile of presents for the kids before we left so another bonus. Since we’ve been home she’s had loads of energy and a brilliant appetite but the skin infection is still with us and antibiotics are carrying on at least until the end of the week. Clinic on Thursday will tell us what the next plan is if it hasn’t gone. Hopefully they’ll take the line out and the infection with it but that’ll leave us with potential other issues so in the meantime we’ll keep taking the pills and sit in the sun.
Consultant says Daisy’s line infection is improving which means we can come home tomorrow! She’ll carry on with antibiotics for a week and then we will discuss having lines out, end of treatment MRI and our 5 year plan. Such good news but not sinking in at all really. Various members of staff have been popping in to see us and remarking on how well Daisy’s doing – again – she hasn’t stopped eating pancakes and pasta since we arrived. There’ve been so many references to our ‘last one’ but it doesn’t seem right yet. Our consultant made it clear that although this stage is over, the next one is a long one. She has to regain her strength and stamina and readjust to being normal again. Home tuition will continue until the end of July and we will still have open access to the ward for another 6 months which is a huge relief. Needless to say I can’t face going anywhere on holiday other than Wales so I know I can get sorted if we have an emergency. Her immune system supposedly takes between 3 and 6 months to recover and her hair will be back again by the time September arrives. We’ve got through the worst and now we’re at the end of treatment so from this point it’s onwards and upwards. Holidays are booked and we’ve typed a huge list of things to do on the IPod, Daisy will be anything but bored as rehabilitation this summer will be on the beach come rain or shine. The wheeling chair’s being swapped for a funky buggy which means we can be out and about no matter what. Fidget’s making a VIP trip to hospital tomorrow as a special going home surprise. Oncology has its own little garden for the kids so maybe we’ll sneak her in.
Doc happy with line site and bloods up enough to allow us to get on with treatment. Antibiotics carry on as well so we’ll either be out at the weekend or early next week.
We were supposed to start the last one today but Daisy’s line is infected and the antibiotics we had all last week haven’t shifted it. Consulant is very concerned about her line as if it comes out a new one will have to go in asap so we can administer chemo. He says to get her on IV antibiotics for the next 2 days and see if we can get on top of it. Her bloods weren’t up either so hopefully it’ll be enough time to get the green light for chemo on Wednesday. In the meantime we stay in and be monitored.