Hi, a little bit late this week, sorry about that. We came back to Portsmouth today after Anabelle's second transfusion yesterday and we can honestly say that it went extremely well and we feel a lot more positive about the whole thing.
We went up to Great Ormond Street yesterday morning and because of the time we chose to use the train and a taxi (I know pushing that boat out!!).
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| Enjoying the pre-meds |
The Kingfisher Ward (which is where she gets treated)was very busy when we arrived but it wasn't long before Anabelle was shown her bed where she would get her treatment. The Enzyme treatment (Aldurazyme) which is extremely expensive, (we believe a few thousand pounds a go), is prepared only once we arrive to ensure that Anabelle is fit for treatment. After having her pre-meds and having the cannula fitted to her ankle, (first time success), the infusion began at about 12.40. By 4.30 it was complete. The whole day was very easy and straight forward from beginning to end, the transport was great, the hospital was great and the nurses were great. We left feeling so much more positive and actually started discussing the future, something we have not done for a while. We appreciate that this is still at the beginning of a very long road and that there will be good days, such as yesterday and also not so good days, which we are doing our best to be prepared for. We haven't heard from the bone marrow team yet but we have started getting appointments for her baseline tests. Two ladies from the Physio team came in to see Anabelle and said that they would be fighting over her!!!
In all fairness we probably could have come home yesterday evening but we had been booked into the Patients Hotel and it was safer to be around in case of any reaction to the treatment. As we had a couple of hours to kill before tucking in we popped over to a local establishment called The Swan where we sampled the fish and chips and had a couple of pints. Anabelle charmed the clientele around us, but that goes without saying.
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| Enjoying The Swan |
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| Also enjoying The Swan |
Im so pleased it went much better this time round, and that you got to enjoy the pub - yay!!! She's a happy, beautiful baby, so im almost certain it wont just be the physio team fighting over her, it will be the entire GOSH workforce, I hope she doesn't cause a riot!! xxx
ReplyDeleteThat's good news - glad to hear it went more smoothly this week - hope you enjoyed your fish supper and well deserved pint ;0) nice to see 3 smiling faces xxx
ReplyDeleteGlad the whole experience was better for everyone . Anabelle looks so cute in the photos. Its really good to hear that your feeling more positive as that also reflects on us and gives us hope too.) love to you all xxxx
ReplyDeleteIt's good to read that your feeling positive about things now, your all looking very happy in your pictures :) although I receive regular updates from Leah I will always be visiting your blog....thoughts are with you always xxxx
ReplyDeleteThe pictures look really good and I am glad the day went smoothly. Good to see you all looking relaxed.
ReplyDeleteSo glad things went better for you all this time! Love and hugs to all.
ReplyDeleteReally pleased it's been a positive week, and Sally you are so right they're all going to be fighting over Anabelle xxx
DeleteShe's so gorgeous! Glad this week went better and you managed to relax. Keep up the positivity, lots of love, Teresa, Shane and Corey x
ReplyDeleteHi all,
ReplyDeleteAnabelle you are such a cutie!!
I'm really pleased you have started a blog as it will help to raise awareness. I hadn't heard about this condition before Sally explained about baby Anabelle. It sounds like Thursday was a positive day which is great, I wish you all many more of them.
Stay strong. I'm sure your beautiful baby girls smile will keep you all fighting.
Lots of love and well wishes Sam, Tony & Ellie May xx (Sallys friends)
Reading all about your ERTs on Kingfisher brings a flood of memories back!! After BMT, your life will change!! No more weekly visits for ERT!! Life will be more..normal!!
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