The number accompanying the post today is not related to the number of days since Orla’s bone marrow transplant but instead those since her diagnosis. It was on this day last year, Ed and I learnt that the number of symptoms Orla had displayed since her birth to 16 months were all indicative of the very rare disorder, Alpha Mannosidosis. We were devastated as were our families and many friends. I remember feeling consciously aware that the sun was able to rise the next day. We were absorbed in grief, it defined us for a few days, we then had to act swiftly and were sent on the path of planning and preparing for the BMT marathon. Ed and I no longer feel devastated, sad at times along with questioning “why us” and some anger but we are learning to accept life for what it is and appreciate many things as parents that I’m sure we may not have otherwise.
I had plans to sit and write a poem over the past few days to capture some thoughts and emotions of the past year but Orla has had a fever and thus I’ve been trying to catch up on lost sleep and visiting the emergency department at RCH. So we ended the year where it began although 12 months ago we needed to ask where to go!! Orla is getting over what is more than likely a virus and we were relieved the doctors sent her home yesterday without taking bloods or giving antibiotics…a sign things are actually becoming more “normal”.
In my thoughts today…the word CHANCE occupies some head space, reflecting on how I would have described it previously, I view it rather differently now or rather not as flippantly. The other thought has found me thinking about a song in the rock musical, Rent which I saw a number of years ago. The song is titled Seasons of love and it refers to the concept of measuring a year in life and how to do so. It’s late at night here in Melbourne now so I’m ability to put expressive thoughts to paper is diminishing…..But, I would measure this past year in my life as my most challenging yet. I also feel a strong sense that it may become that which I measure as my most rewarding. It is definitely as the song describes, a year measured in love.
Finally, Please see a photo below of the gorgeous girl this blog is dedicated to taken earlier in the week….Lovely!
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!
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.