Vega is about to begin Maintenance cycle 3 tomorrow. This is 3 out of 8. Can you believe it has been six months since she started Maintenance?
Tomorrow is also Alys’ 2nd Birthday. We will be spending it, or at least half of it, at the Marsden. A new cycle always means meeting our consultant as well as Vincristine and the start of another dreaded Dex week (steroids). Tonight Alys is pretty oblivious about her special day tomorrow and I guess she will also not mind spending the morning in the playroom of an oncology ward, but I am feeling a little sad. Birthdays, Christmas, New Years… all those days that are easily remembered because pictures are taken, presents given that remain for many years, memories made. Nowadays each of these days inevitably takes me back to the last of it that we spent without Vega being ill. For poor Alys there hasn’t been a birthday when Vega was not ill and this time last year Vega was actually very poorly. I remember that I felt unable to make a cake, whether it was tiredness, sadness or just being to busy with a poorly child, I do not recall, but Alys had a fancy fruit cake we bought from a shop- entirely non-child-like. More than half of Alys’ life has been spent with Vega ill. I am sad to think that she only knows me worried and stressed. I feel guilty too, although I do know this is not my fault at all.
So I kind of dwell on things lost. And I suffer under the things I have gained. The weight on my shoulders, the burden of caring for a sick child, as well as two healthy ones. The guilt of not being stronger some days and for being snappy on others.
Vega also has weight issues. The monthly steroids increase her appetite and as Maintenance goes on the effects almost seem to be accumulative. Vega becomes absolutely obsessed with food, and not only during her steroid weeks. She eats and craves mainly carbs. She is tired often and so not very active. She is pretty chubby again. I, as the mother, have to control what she eats and how much. That sounds so straight forward but I struggle with this so much. Some steroid days it is literally telling a crazed mad little fat girl to stop stuffing her face with bread and eat some fruit or veg, in the nicest and most political-parenting-correct way possible. Vega releases a shit storm on me about 4 times a day, always around the main mealtimes and then of course there is mid morning and mid afternoon snack time to deal with too. You can tell it is stressing me out because I feel inclined to swear. Well I tell you this really sucks. At the least it is very tiresome having to occupy myself with meal plans and shopping lists a good part of each of my days.
I don’t want to sound to harsh. I am trying to deal with this compassionately and I think for the most part I do.
When we first started on this journey I thought about chemo and blood transfusions and hospital admissions. Never did I think that issues like weight or food would become such challenges. And hence, even though we have not been in hospital since January (yeah man!), and Vega has not had major issues (from a pediatric point of view), it has really not been easy these last few weeks.
Now I do not want to end on such a depressing note. There is, after all, a birthday to celebrate. At the Marsden, but that can’t be helped. I did make a cake for the little poppet this year.
And looking at that picture, I am reminded that things do get better.