Day + 256 Fun times

There are some benefits to isolation such as visits from talented people like Anna in the photos below with Orla. Anna is a music therapist with the organisation, Challenge. These photos were taken a little while ago, Orla’s hair is now a little longer and curlier!

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Orla is continuing to do well. From a BMT perspective she is tracking as hoped and everyone at the children’s cancer centre comments on how well she looks whenever we attend! She had some blood tests a few weeks ago to check the status of her immune system which is continuing to develop well. Orla’s new immune system is not quite fully functional as the numbers of some types of cells are still a little low. However in the coming week she will finish weaning the immune suppressing medication, Cyclosporin (a day worth celebrating) hopefully then her immune system will continue to develop. Orla will then be able to stop the only other remaining medication, an antibiotic she has twice a week to guard of any bugs she may have come into contact with. She did develop a cold a few weeks ago which didn’t render her unwell at all really but the issue was yet again her ears…in particular her hearing….fluid on top of her existing hearing impairment means she becomes more significantly impaired and a routine hearing test last week confirmed this in one of the sound frequencies. It is thus really important for her speech and language development we keep her as well as possible.

Orla’s eating or appetite seems to have exploded in the past week. This may be coincidental but we stopped her anti-fungal medication (based on the results of her recent blood test) this week and things seem to have improved significantly. Nonetheless we are delighted, this is a massive achievement and we hope drinking might be next!! Orla is thus in turn sleeping much better although last night was quite an exception with her waking at 2:30am and no chance of returning to sleep! It is Melbourne Cup here tomorrow so we are taking full advantage with a few extra days off and are away for a long weekend as a family for the first time in a very long time and enjoying the change of scenery. We can’t help but remember and reflect on how different we were feeling at the same time last year when our anxiety and stress levels were starting to heighten as we were getting closer to Orla’s diagnosis having been to the geneticist this same week.

9 thoughts on “Day + 256 Fun times

  1. Oral looks like she is having lots of fun with Anna. It is great to hear that things are continuing to go well for Orla and that you are having a family weekend away together. With this progress in no time you will be planning a family trip to Europe and Orla’s first trip to Rivecave.

    Love,

    Francis.

  2. Delighted to hear such great news of Orla and to see her look so well and happy. We’re so looking forward to spending some time with you all when we visit in February. Xx

  3. Orla looks great. You must be so pleased about her enthusiasm for food. Hope you have the best weekend as a family. Love from Ros & Owen xxx

  4. Beautiful, lovely to hear how Orla is progressing. She is looking amazing. Hope Mum & Dad are faring well also. Love Bill & Marie

  5. Hi Ed Flick and Orla

    So very sorry we have not been in touch for so long. Just life seems to have got in the way of some things so important.. so here is a little message from us two! We are delighted to read your newsletter of yesterday, it is tremendous to hear that Orla is coming along so well. We hope you have a fabulous and relaxing, as possible!, break away as a family. A momentous occasion –enjoy!!

    Hope your news continues to be as good

    Lots of love

    John and Jane oxoxox

  6. hi Flick, Ed and wonder girl, Orla. This email somehow slid by us. So glad that things are on the up and up. Good appetite, meds gone soon and a happy looking girls. It is great. Hope you had a lovely weekend – you so deserved it. Hugs and kisses all round Carmel and goergexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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