Her treatment over this next 15 months remains the same – daily chemo, weekly antibiotics, monthly steroids/intravenous chemo and 3 monthly intrathecal chemo (brain and spine) under general anesthetic She is eating and drinking well, putting on weight and no longer requires any kind of overnight feeds or fluids through her ng tube.
There are ups and downs – this week her red blood count has dropped to 80, which usually requires a transfusion, so we are watching carefully to see if it comes back up. If not, we’ll be back in sick kids but hopefully only for a day. Occasionally she has become neutropenic, which means we are again restricted to being in the house or a small number of other non public places. But on the whole, life is much, much better. It feels that we are living something that is beginning to resemble a normal life (nursery, activities, play dates, etc) rather than a restricted life with the occasional time out.
However, the not so good news is that her treatment is having a severe impact on her muscle strength. We knew this might happen, and it is very likely to be her chemotherapy treatment and, in particular, Vinchristen. Vincristen is a necessary part of her treatment but it is devastating to see the effect it is having on her. Because we have yet to find another case of SMA and leukaemia together (worldwide, it seems never to have happened before), no-one really knows the possible outcome of this treatment.
The result is, Anna has lost almost all strength in her legs. She is unable to take any weight on them and is completely wheelchair dependent. On a day to day basis, she needs help throughout the night (maybe 4-6 times to turn over), to sit up/lie down, to go to the toilet, to be bathed and dressed, to be taken up and downstairs, to be seated in a chair, to eat her food/drink, to do any kind of activities (eg take the lids off pens, hold toys), to go out in the car, to play in the park etc etc. It is absolutely exhausting. However, thank goodness for her strong spirit. You might not be surprised to know that one of her favourite phrases is ‘I CAN DO IT MYSELF, MUM’, shouted loudly and clearly.
We don’t know if the extreme weakness is permanent. So, we hope for the best, and plan for the worst.
Team Anna, as I like to think of it, still consists of a large number of medical specialists, health, social care and others. On a weekly basis, she will almost certainly have at least one regular appointment (physiotherapist, occupational therapist, hospital clinic, hydrotherapy, outreach nurse ). Then there are regular but less frequent appointments ( Newcastle muscle centre, dental, orthotics, play therapist, school,wheelchair/equipment services, community nurse, etc). Many of them do communicate with each other, but not all, so I always have to check that the appropriate people know all the relevant information. All of this, along with what seems like endless form filling, has become like a full time job (just without the pay!).
It is clear that Anna will now require hoists in the house. Ironically, she is growing so well, a really positive situation in terms of her leukaemia treatment, that she is almost too heavy for me and others to lift. Because she doesn’t have the ability to take weight on her legs, and therefore assist in transfers from seat to toilet, seat to seat, seat to bed etc, a hoist is necessary. Eventually this will mean a fixed tracking hoist in the house, preferably from her bed to the bathroom. For various reasons, we don’t know how long we will be able to remain in this house. It means that we have to make sure that wherever we move to is able to be adapted for Anna in terms of wheelchair access, tracking hoists, through floor lift (if more than one storey), wet room, space for power chairs, storage for large mobility equipment, spare room for overnight carer, … … … and probably more things that I’m not even aware of yet.
Her rapid decline in strength has meant that she needs to have a wheelchair that allows her as much independence as possible. So, we are about to start fundraising for a Snap Dragon wheelchair – I’ll post more information here very soon. In the meantime, if you want to see more, look at www.dragonmobility.com.
We are fortunate that there are so many people willing, and so much equipment available, to help Anna. The responsibility to provide alternatives and make everything accessible lies not with Anna but with us. Her job, and she does it well, is to always have high expectations of what she can do and not take no for an answer. Persistent doesn’t even begin to describe her!
I’m so grateful for everything we have. Anna should be able to do everything she wants in life, just like Nathan. And they are both happy, noisy, lively and gorgeous children. I am excited about the future for me, Anna and Nathan.
Life is looking good. xxx