Isita will start immunotherapy this morning. We came back to GOSH last night. She hasn’t got a cold any more and the doctor who examined her on admission said the results of the blood tests they took on Friday were fine. The pain team came in early this morning and fixed her up to a pain pump. Right now it is only running on fluids but they will give her a bolus of morphine as soon as the immunotherapy starts. We can’t help being a little nervous about the start of such important treatment and, of course, about the likelihood that it will cause Isita pain.
Our three weeks at home have been amazing, despite a build up of nervous tension about the treatment. Marta and I are paradoxically relieved that they are over. We need to move on, not least because in a fortnight we’ll be back home again for another three weeks, and as this treatment goes on the more time Isita will spend at home and the easier it will be.
Marta is very tired and I think the weight of expectation about the immunotherapy is part of that. I have had a lot of work and have tried to use it as a distraction or escape from worry. Jamie too has been a bundle of nervous energy, thrilled to have Isita back at home, at times incredibly tender and very, very sad to see her go back to hospital but also jealous, territorial and sometimes just as rough and rebellious as any seven-year old boy can be. I think he can hardly know or recognise what is going on inside his own head or his heart or gut these days. He is being pulled in so many different directions. And Isita herself is demanding, still used to being to total centre of attention not just of her parents but of a whole world of doctors and nurses who only come into her life to focus on her. We are trying gently to bring her back into a more normal world.
Isita’s sixth birthday on Friday was sweet but very low key. We were only ever going to invite a tiny number of her friends, as she had to stay infection-free as much as possible in advance of this first session, but most of them had colds. So it was just Emily and that was perfect. Isita made her cake with Marta and then she and I iced and decorated it. She even ate a decent amount of it and is very proud of the fact that she was “absolutely fine”. In fact, I don’t think she was sick all week.
Later in the day she had a massive tantrum which Emily graciously ignored, even when Isita furiously stomped upstairs. We saw the results when we took the children upstairs to bed. It looked as if a bomb had gone off in her room. The truth is it doesn’t take much to make her room look like a bombsite. She has way, way, way too much stuff – the combined results of so many people’s generosity. There just isn’t place to put it and we are going to have to give a lot away. For the things that we cannot keep, we will find good homes back here at the hospital, in the outpatients departments, or wherever else they are needed.
We are looking forwards to being able to switch from receiving to giving mode. We have so many dear friends who are doing so much like the redoubtable Cristina, who is supporting GOSH, and who gave her most recent running medal to Isita. Marta and I continue to be astounded by this generosity. Isita’s godfather Rupert came on Sunday with Sara, their daughters Amelia (who has given up sugar for February and so far raised £2000 for GOSH) and Kitty, and their son, my godson Archie – a true soulmate and partner in crime for Jamie. He brought with him an envelope gathered from lots of friends intended to support our intended family trip to Eurodisney as it is absurdly expensive and once we are there we shouldn’t hold back. He said there is a card coming identifying who you are. Thank you all. We are extraordinarily touched and grateful. We are also doing very well. The most important thing now is to support the hospital and the neuroblastoma charity Solving Kids Cancer.
One thought on “Starting today”
Fingers crossed! All our prayers are with Isita and her family.