The first course of chemotherapy is now done and the results of the MIGB are back. As expected the scan shows the cancer elsewhere in Isita’s bones. That is why the lengthy and intensive course of multiple therapies has been prescribed.

Isita could leave hospital as early as tomorrow but more likely on Wednesday. The main concern of the doctors is that she should eat. It is vital that over the next 2 1/2 weeks she does not lose weight and if anything she puts it on. Otherwise they will have to reduce the amount of chemo they give her next time and they do not want to do that.

On the ward round this afternoon, the doctors are very clear that for the time being all our concepts of healthy eating must be abandoned. She must consume calories in whatever form they take.

So when Mrs Millen, Isita’s teacher from Pembridge Hall arrived this afternoon and found her reclining on the bed, elegantly dropping the last chunk of a chocolate Bourbon biscuit into her lips, it was on doctor’s orders. Not something you could say very often.

Mrs Millen came laden with presents from the class, including a fabulous china fairy. She was impressed to hear that over the past two days we had cracked through Sally Gardner’s Operation Bunny – a proper novel no less with very few pictures. It is a beguiling yarn and the fairy theme helps. Until we tried her on it, Marta and I hadn’t realised she was old enough – more fool us.

The chemotherapy continues. Isita is doing well and not complaining of pain, although we don’t know yet if that is the treatment or just the painkillers. She had a bit of fever but that has now gone. The biggest struggle is getting her to eat. This evening she had salt and vinegar crips and some mango.Whatever works.

Meanwhile, Marta and I are eating fantastic creations for every meal thanks to our lovely friends. It is very comforting, we have no words to express how much it means to us. Also, thank heavens we don’t have to rely on what the GOSH canteen produces. The hospital’s Rolls Royce standards don’t extend to its cuisine.

A friend with experience gave me the useful tip that the halal menu option is always better, maybe because it is also prepared for other more exclusive patrons. But even Gulf princes will not been eating as well as us.
As my cousin Iona and Marta’s cousin Asunta were both here this morning, Marta and I took a good walk around the edge of Coram’s Fields and celebrated her birthday in a coffee shop. It was the first time we have had to ourselves in about a fortnight.

The first 24 hours of treatment has gone well. The nurses are pleased. They have administered some longer acting painkillers which are working. Isita has not suffered any bad side-effects so far – it is of course quite early for that. She has slept a lot, and does not have much appetite, but she is cheerful, chatting with the nurses and giving them the benefit of her wisdom.

It is remarkable how she has adapted to the inconveniences of having a cat’s cradle of tubes attached to her body via her wiggly. When she gets up to go to the loo the whole stand with computers and bags of medicine goes with her. We have to unplug five power cables. Each machine omits its own emergency klaxon, and a small procession marches round the bed. The cacophony continues until Isita is safely back in bed, and the electricity supply reconnected. She puts up with this palaver stoically.

I was with her last night and Marta is there tonight. We are getting a feel for how the shifts should work between us. Also, Isita’s godmother Tia Asunta has come over from Frankfurt. It is Marta’s birthday tomorrow (Sunday) so she needs a treat.

Treatment has finally started. They connected Isita to a complicated array of computerised syringe drives at about 6pm this evening. She is now sleeping very calmly. 

It is a relief to have got to this point, even though it is the start of a hard road. Our immediate concerns are, of course, how to deal with any side-effects. We also hope that the treatment, as well as being effective, will quickly remove the pain that she had endured the past couple of weeks. 

Isita’s treatment did not start yesterday as a bed is only available starting on Friday. In any case, we spent most of the day at the hospital doing kidney and heart function tests. 

Today (Thursday) we went back for the first stage of the MIGB test. They injected a special radioactive dye into Isita via her wiggly. Tomorrow morning they will carry out a scan. Any areas that the tumour has spread to will light up on the images.

We are very anxious for treatment to start as she has been in more pain over the past couple of days, and managing the painkillers to keep her comfortable is tricky.

We know that Isita has been included in the US protocol side of the trial. For those who are in to details, this means she will be getting the modified N7 treatment. This is administered in hospital over five days followed by two weeks of recovery at home. She will therefore be at GOSH, with either Marta or myself, from Friday until Tuesday or Wednesday and then at home until 9 or 10 February. Then we start a new cycle. We do five in all, so could finish this stage of treatment in early May.

Marta and I discussed Isita’s treatment this morning with Dr Giuseppe and our specialist nurse Susan. We also signed the consent forms to be included in the clinical trial for children with high risk neuroblastoma.

The treatment, either by the European or US protocol, will start tomorrow (Wednesday) afternoon. We must hope and believe that the next three or four months of chemotherapy are as effective as possible. A good initial result makes all the next steps easier.

So, we are completely focused on being strong for Isita, and ensuring she can be strong for herself. Dr Giuseppe’s common sense advice was that we should provide her with as much normality as possible and to do our best to keep her in a good mood without spoiling her. This is a good practical task for us.

Dr Giuseppe was unsurprisingly sceptical about homeopathy – although we can get a recommendation to the homeopathic hospital next to GOSH. I am not sure what he would make of my Christian Science education with its focus on spiritual healing, let alone of the precious hair of Santa Angela de la Cruz, and the holy water from Lourdes which some darling devout Tias asked Marta’s sister Bego and her mother to carry over to London. They brought more than 100ml so had to check their bags in. 

Intellectually these beliefs and ideas don’t sit together easily. Neither the religions nor the sciences agree even between themselves. But for us here and now they are united in a common objective – Isita’s wellbeing. As we have said to each other many times over the past fortnight, we will draw our strength from where we can.

Marta and I are going into GOSH tomorrow to make the final decisions on Isita’s treatment with the doctors, and to sign the consent forms. We will then all go in on Wednesday morning for Isita to start treatment. 

As the reality closes in, it becomes more nerve-wracking. The drugs and the therapy are very strong.  But for now we are still at home. I managed to do some work in the morning and looked after Isita in the afternoon, until her school friend Castile came for tea and they made cupcakes with Maria, who is keeping our whole household in order.

Now she and Jamie are in their pyjamas watching a Tarzan cartoon and drinking milk before bed.

We have had a lovely weekend at home. Isita is feeling well and we are too, especially after the delicious gin and tonic brought by Jess and Victor. Marta has been reading and researching the treatment that the doctors are proposing and has found a friend in Spain who has successfully gone through it. Although we are taking this day by day, it is heartening to hear of others who have made it through.

The more we read and research, the more we appreciate the extraordinary cutting edge advances in science which the doctors will use to cure Isita.  We are also going to explore ideas such as changes to Isita’s diet which may both reduce the cancer and improve recovery during the intervals after chemotherapy . We have already had offers of help about this. The third, and not least, element is the spiritual, moral and practical support we are getting from all our friends and family. Thank you!

With the GOSH Saturday Club

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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.