We are coming home for a couple of days. They will let Isita go after the doctors’ ward round this morning. We will come back to GOSH on Monday afternoon or Tuesday morning, depending on when the results of her tests come back.
When we return, we return for treatment. So this little weekend of quasi-normality is going to be a precious moment, but also a chance to take stock and gather strength.
The main immediate concern is ensuring that Isita is not in pain or even uncomfortable. We have had two good nights – the days are easier. This makes all the difference to us as well as to her.
We must now also look after the line which has been inserted into her chest and which emerges from under her arm. At GOSH, this is known as her ‘wiggly’. Thanks to the extraordinary skill and empathy shown by the play specialist Shirley, Isita was ready for this strange addition. One of the latest additions to her expanding village of soft toys is a bald lion with a wiggly and a couple of wigs instead of a mane. The wiggly is already normal. ‘No more blood tests’ Isita says happily.
The team looking after us have given us all the information we have asked for about the treatment they are recommending. From early next week, we will be starting with induction chemotherapy, intended to reduce the size of the tumour and to remove it from elsewhere in her body.
She is likely to lose her hair quite quickly, and there are other side-effects which the doctors have started to explain. Everyone is extremely patient with our questions.
One complex question that we have to answer ourselves, is whether to allow Isita to be included in a clinical trial giving her a 50% chance of being treated according to the US protocol for this stage of treatment. No one knows whether the European or US protocol is better. That is why they are doing the trial.
If we go ahead, it may make no difference because we might end up on the European protocol, a certain cocktail of drugs administered over a 10-day cycle, with a slightly higher risk of damage to hearing. If we are randomly selected for the US protocol, a different and stronger set of drugs are administered over a 21-day cycle, with slightly higher risk of damage to the heart.
How quickly we adapt to the frightful new circumstances of our lives, these decisions, risks and threats. Our happy old pre-cancer existence has gone, and one of the biggest surprises is that our new existence, despite all its trauma, worry and sadness can also be happy – and it will be.
4 thoughts on “Weekend break ”
Marta, give me some details of the clinical trial if you want. I could do some enquiries.
My email is j.carvajal(a)csic.es.
Enjoy very much this time together! One day at a time. All our love and prayers with you, Hamiltons!
Los Salcedo Cardenal.
Thinking of you and hope you have a good weekend. Lots of love Sasha
I hear you have a wiggly! How wonderful and special your wiggly must be. Only 2 of my friends before you have ever had wigglies. They are very special and important indeed.
The closest I ever got to having a wiggly was when I had an EEG on my head which had many wires hanging of it. I liked my wiggly wig and was sad when they took it off.
We all miss you and talk about you at school. We hope to see you soon.
Lots of love to you and your wiggly
Love Lilly Rose ( RAM)