21 Sep Childhood Leukaemia – Siblings ~ A Guest Blog by Melody Berthoud
Keeping a routine for Clara (5) was very important when Andrew (3) was diagnosed with Leukaemia. We would sacrifice our own sleep, and time with each other, to ensure Clara was content.
We were grateful she was older than Andrew and at school already, so busy. My
friends with daughters the same age would have Clara over at a moment’s notice, any time of day, for a meal, fun and friendship. There were times when we overdid this.
There were days when she screamed and shouted at us when we picked her up. She felt the abandonment, but we were doing the best we could and thought we were giving her the best opportunities we could in the circumstances.
It was heartbreaking, as we couldn’t get cross with her when she was getting mad at us. We waited for her to finish her rant and then cuddled her. I remember once collecting her from a play date and wanting to drive home but she wanted to walk home. I got her in the car, but she wouldn’t put her seat belt on. She was so cross and crying and shouting. I was exhausted and wanted to get home, but I couldn’t drive without her having her seat belt done up. It was frustrating, but I had to climb into the back with her and calm her down.
Andrew spent 73 nights in hospital during treatment. Often when Andrew was in hospital with Joseph, Clara would sleep in bed with me at home. She needed the reassurance that we aren’t going to disappear in the middle of the night and leave her. She slept with her foot touching me. Clara developed a love of French plaits. She would ask me to braid her hair in the morning. It made me stop multi-tasking and whizzing around. It made me stand still and dedicate time to her for ten minutes. I knew what she was doing, and even though, over time I got better and faster, I still took my time.
At diagnosis, Clara had moved into Year One. Andrew had the same teacher and teaching assistant in reception that Clara had. At parents’ evening the teacher told us that, throughout Year One, Clara would walk up to her in the morning and tell her what she was having for lunch. The teacher would pretend to write it down on her register. It was a small gesture but one that moved us deeply. To know Clara had someone going over and above the pastoral care she needed in school to make her feel safe and secure still brings tears to my eyes.
I remember one Christmas I popped out from hospital for a few hours to see Clara’s nativity. I hadn’t seen her all week, so I felt desperately sad when I saw her as a beautiful angel on the stage. It was heartbreaking because I knew I had to go back to the hospital again and I had missed her so much. I cried silently all the way through.
Afterwards, the teachers let me have a cuddle with her in the medical room, but I was very upset and actually she wanted to go off and play with her friends. Even though I wanted to hold her tight, I let her go. Leaving her to come back to the hospital was one of the hardest moments and I cried all the way back.
During the frequent steroid weeks, Clara would become confused by Andrew’s change in temperament and jealous of the attention he demanded. Clara hated steroid week. Each month we told her it was coming, that this was Andrew’s grumpy week, but there was always a point where we had to remind her to ignore Andrew’s mood and not react to it. She would get sulky and strop about saying “you didn’t tell me” or “I forgot”. She found the injustice hard. Andrew was allowed to watch more TV so I could spend quality time with her; he was allowed to eat different dinners to us but when she tried to refuse food, she wasn’t allowed to. He was excused rudeness or moodiness, unlike her, because ‘it isn’t Andrew, it is the medicine; he cannot help it.’
We told her off for provoking Andrew or reacting to make him cross, but she didn’t understand. She lost her playmate for a week a month, and it always took a few more days for her to get over the hurt and trust him enough to play with him again. By the end of the five days, the clingier Andrew got, the more demanding Clara became. I arranged play-dates for her after school in steroid week, which she enjoyed, but they probably perpetuated the abandonment she felt.
Christmas 2015 Andrew spent in hospital. On Christmas day, Clara woke at 6:30am, so we jumped into the car and drove straight to the hospital. She held onto her stocking for a whole hour before actually opening it with Andrew – she was AWESOME. She had made a pact with Andrew that they would only take two things out before being together.
If you ask her, she says being separated on Christmas eve is her worst memory on treatment (that and not being able to come with us to 11 Downing Street to meet strictly stars and Rupert Grint!).
However, I think the experiences have made her into a wonderful, kind, independent young lady. She is protective over Andrew and as proud of him as we are of her.
CCAM #siblings #bloodcancerawarenessmonth #makebloodcancervisible