Vega is on steroids again. That means that the first month of her first maintenance cycle has passed. I have found it to be much harder than expected. I think I have held on to this holy grail, the light at the end of the tough blocks tunnel for the last eight months. And then it came and it turns out it is not that different. Yes, Vega is much better most of the time. Her port is accessed much less and our hospital days are now far and few in between. The hair is back.
Yet it is still chemo, still neutropenia, still leukemia. The fact that Vega is better on some days just seems to highlight the days when she is not. Over the last two weeks her oral daily and weekly chemotherapy has been omitted and reduced. Her bloods have gone down and up and down again. The weekly Methotrexate had made her mouth sore gain, her tongue looked like a snakes tongue, completely split at the tip. The mucositis was very slow healing. Her skin is blotchy and she bruises easily, although her platelets are good. Her appetite comes and goes and she still feels sick often, especially when we drive in the car. She is spotty like a teenager and many of the spots get infected and then heal very slowly and are leaving little scars, similar to chickenpox scars. Vega is tired often, and we had the weird eyes rolling into the back of the head sleep in the car after her visit to Kings on Monday to get her monthly push of Vincristine.
I am tired too. This whole thing just never seems to leave me alone. We were at the cinema on Tuesday, Vega, Lyra and I and about one third into the film Vega wants to sit on my lap and have a cuddle. These are not just ‘three year olds cuddles’. These are cancer, chemo cuddles. I am holding her, cuddling her and I feel sad she has to do all this. She is not feeling particularly poorly or anything, but she feels ‘not right’. Off.
The week before was Bonfire night. We went to see the fireworks in the park, Papa, Vega, Alys and me while Lyra was having a sleepover with a friend. Alys was dancing to the music, crazy like she always does, clapping after each song, turning round to look at Papa and me. Vega was tired but didn’t want to sit in the buggy so I had her strapped to my front in the sling. I love fireworks. Watching the gold and silver and red flowers appear and fade almost instantly suddenly made me cry. I have had this many times in the last months- tender moments between sisters, a beautiful sunrise, a hug from Vega. Good things happening, beautiful things witnessed, and on go the waterworks. In precious moments I am reminded how precious Vega is to me (obviously all of my children are precious to me but it is Vega who is dealing with a life threatening illness). How much I want her to be there to see the fireworks, the sunrises, to hug her sisters, hell even just to watch the newest cheesy Disney film, this year and next year and the year after. And after.
This is where the relentlessness lies now, the reason why this never seems to leave me alone. Cancer and the fear of losing a child has infiltrated every part of our life. Facing the possibility of a loss seems so much worse in the good moments, on those good days, when Vega is happy, when she is with her sisters, when her absence is unimaginable.