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.

All well. Results early next week. She is sleeping.

OK friends. We have the first indication of what we may be dealing with and it is a hard one – tougher than we had hoped. We won’t have the 100% identification until Monday, and we have been advised that it is worth waiting until then to start treatment.

It is most likely that Isita has a neuroblastoma. In simple terms this is a tumour caused by cells which should have developed into neurons during early development, but have instead waited until now to grow into tumours. It is random. It has always been there latently. The trigger for is not known. Aside from the main tumour it is almost certainly elsewhere in her body. Further tests such as the bone marrow analysis and biopsy tomorrow morning and the MIGB next week will tell us more about this.

If this diagnosis is confirmed we are looking at about 18 months of treatment – the ‘full weaponry’ as the doctor said. The problem is not so much eradicating what is there, but making sure it doesn’t return.

All the following must be prefaced with ‘probably’. We are looking at chemotherapy followed by surgery,  further high intensity chemo and a bone marrow auto-transplant,  and radiotherapy. This will take about a year. There will then another six months of other therapies. We have the chance to take part in a clinical trial of cutting edge immunology, which is meant to reduce the chances of a recurrence.

Of course we are scared. It is a daunting trial for her young body. We will provide her with all the physical,mental and spiritual support she needs. Together we will get through this.

Marta and I have been deeply moved by the messages of support, offers of help, deliveries of food, expressions of love and the prayers that we have received from our families and our friends. Isita is also thrilled to hear the messages you have sent her.

We are grateful that Isita is receiving medical attention from the best professionals at the best hospital, but we also need some luck. And we need your help so we can be strong for Isita.

I spoke to a very kind and experienced Christian Science practitioner today who reminded me that Isita is innocent so that in God’s eyes she is perfect.

We are receiving the power of positive thought from an altogether more traditional quarter as well. Our dear friend Alejandra in Madrid Who helps convents over all of Spain to sell their produce has galvanised her network. Every nun in Spain is praying for Isita’s recovery.

It was a bit of a rough night. Isita has started getting pins and needles in her right arm. This has coincided with the doctors changing her painkillers as they don’t want her to be on ibuprofen for too long. 

It seems like this is a common side-effect as the tumour is close to nerve-endings in the back. Stroking the arm seems to soothe it. We did a lot of that last night and didn’t get much sleep as a result.

Dr Guiseppe reckons we may have the biopsy on Friday, meaning we would get the results on Monday. Discussions about treatment would follow soon after. However, this is not the only scenario. It is also possible that all the tests will happen next week or we may have to wait for the MIGB – definitely next week – before they can decide.

As we are just waiting, they might allow us to go home again for a day or two. While this would be lovely, we’d prefer to stay here and get it all done.