We have more than our fair share of planned medical appointments – oncology, respiratory, endinocrology, spinal, neurology, physiotherapy, occupational therapy and orthotics as well as all the other school and social care meetings. These range from monthly to annual and everything in between and so there is rarely a week that goes by without some kind of appointment. There are also frequent unplanned events around Anna’s care needs. There is not much I can do about this. I just have to plan our lives as best as I can and make sure that I’m always available.
Anna has had three appointments in the last two weeks, all worth a mention.
The first was her 6 month check up with the respiratory team at Edinburgh Sick Kids. Anna’s muscles are weak due to SMA. Not just the muscles that would allow her to walk or make more of use her arms but internal muscles as well. When she gets a cough she doesn’t have the strength to clear her lungs so phlegm or mucus build up. That leads to two main problems. Firstly, the build up of phlegm/mucus creates an ideal breeding ground for bacteria, leading to infection such as pneumonia and then hospitalisation. Or secondly she manages to cough it up just far enough to fall back into her stomach, leading to severe nausea, dehydration and again, hospitalisation. Although she finally has a cough assist machine which helps clear her lungs, I’m still paranoid about letting her get near anyone with a cold or cough. It’s not a big issue for most people but for Anna it can be serious. Maintaining good respiratory health is essential for Anna and anyone with SMA.
Anna’s second appointment was her annual bone density scan. A combination of being non weight bearing and receiving steroid treatment for leukaemia meant that her bone strength had deteriorated to the point that her bones were were beginning to break when she simply bent an arm. Because of that, her leukaemia treatment was stopped early as the consequences of such serious bone fragility were too severe. She had bone strengthening treatment for over a year and her bone strength now sits just within the normal range for a child of her age. We go to the Medical Physics department at the western general hospital in Edinburgh for an annual scan (she lies under the machine in the picture) to monitor ongoing strength. Obviously it’s important that her bones are as strong as possible for lots of reasons.
Anna’s third appointment was for surgery. We’ve been waiting almost a year to get her portocath (click for more information) removed, due to illness on either her or the surgeon’s part or higher priority patients bumping her off the lists. The first procedure she had done after she was diagnosed with Acute lymphoblastic leukaemia (ALL) was the insertion of the portocath. I remember clearly the trauma of trying to get a cannula in Anna’s hand in those immediate hours following diagnosis. She was so dangerously ill at that point, and her red blood cells down to next to nothing, and they couldn’t find a point to get it in. We were all traumatised. Having a portocath made it easier to give her the hundreds of procedures needed such as blood or platelet transfusions, steroids, chemotherapy, antibiotics, fluids, anaesthetics, etc. Anna’s general anaesthetic/surgery was scheduled for Tuesday afternoon so she had to fast from 7.30am. She had an early breakfast at 7am of porridge and then nothing until after surgery around 6pm. It all went well and we were able to get some painful dental work done at the same time while she was anaesthetised.
My beautiful, gorgeous girl is now 8 yrs old. 5 years ago today she was diagnosed with Childhood acute lymphoblastic leukemia. After 2 years of intensive treatment she remains in remission.
She is just like many other 8 yr old girls. She loves arts and crafts, singing dancing and (still) loves anything pink and sparkly. 
She has a full and busy life with school, after school activities, play dates and holidays. She expects to be able to do everything and that’s what we try and make happen. However we face challenges on a daily basis in terms of the level of care and support needed as well as ensuring accessibility in its broadest sense as we go about our lives. Anna still doesn’t sleep through the night, needing help to turn over or move her covers, which means I live in a state of constant exhaustion. She remains under the care of 6 consultants across 3 hospitals and 2 countries. She needs help with every single aspect of her life both day and night.
led to blog in the last year or two (mostly because I’m just so tired all the time) but I know there are lots of you who want to know how Anna is doing. We still have a story to tell – not so much now about leukaemia but more about how we deal with disability and ensure accessibility in every aspect of Anna’s life. I’m going to do my very best to continue the blog to tell you that story.
