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.

Isita has just gone to sleep after a quiet day. She gets  uncomfortable in the evenings when she is tired, so I am drowsily rubbing her arm. They are about to switch her from ibuprofen to a low dose of morphine. 

We had an ultrasound in the morning- this was mostly to help the doctors plan for the biopsy. The tumour is surrounded by healthy tissue – so they need to find the right way of getting to it.
Then they took some blood. This involved a lot of persuasion. Isita doesn’t like the idea at all – but insists on looking- ‘show me the size of the needle!’ It isn’t a good idea, but she is pretty determined.

She is also a ruthless negotiator. After the blood test she ended up with two barbies, a pop-up pirate toy and we had to buy her a soft tiger downstairs. I have no idea how she managed this.  

Earlier Marta and I had a reassuring chat with Susan the specialist oncology nurse who is looking after Isita. ‘We aim to cure all our children so they can grow up to have normal healthy lives ‘ she said.

We are waiting to hear when Isita goes for the biopsy. This is the next major event.

We have just seen Dr Guiseppe Barone on Safari Ward who showed us all Isita’s MRI scans, explained what we know about the lump so far (not much beyond its location and dimensions), and went through the plan for the next week. 

They will do another ultrasound, a biopsy, bone marrow test, and will put a line into her chest. The last three will probably happen under the same general anaesthetic. In the middle of next week they will do something called an MIGB test – which uses dye to see if the cancer is elsewhere.

t is too early to speculate, but the doctor said it is not that old and if it is elsewhere that is because this is sometimes how it is with children- not, as with adults – because it has spread.

This all sounds a bit scary, but the doctor was so calm, clear and straight forward that Marta and I both feel reassured. We feel immediately in the most competent hands. 

We should expect to be here for two to three weeks- then every other week while the treatment goes on.

There is a plan. Even in this most dreadful situation it is amazing how comforting this is. We are ready to fight and to overcome!

Monday morning  – we had a lovely evening with all of us home together last night. Robert brought Jamie back from Betchworth just as we were returning from a short visit to St Mary’s. So our little family had supper together. Isita wanted to stay sitting on the sofa, so we made the low stool in the sitting room into a table . When they finished eating the children zapped each other with little space guns that Jamie’s cousins had given him. Then bath and bed.

Of course, it is normality with a difference. Supper in the sitting room. Isita sleeping with me and Marta in the bottom bunk. But the daily routine has never seemed so precious.

Now we are preparing and bracing ourselves. Yesterday at St Mary’s we dropped of a jerry can with 24 hours of Isita’s wee – which the doctors will even now be analysing. The wonderful Australian doctor Jess told Isita about kangaroos and koalas as she took out the drip in her arm. Isita was a bit worried about her blood coming out. ‘We’ve all got these blue things in our arms’ said Jess, flexing her fist to make hers stand out. ‘You mean veins?’ asked Isita. We love the way that nothing escapes her sharp little brain.

Isita is booked into the Safari Ward at Great Ormond Street Hospital  – GOSH.  As we said goodbye to St Mary’s for the time being, they gave us a sheaf of reports and the recommendation letter, not easy reading in any respect.

Coming back from dropping of Jamie at school this morning, our friend Felicia gave some wonderful advice about not letting ourselves become overwhelmed with all the possibilities which the doctors have to consider, and above all to stay away from the internet. That way madness lies. We must take each day as it comes, get second opinions and take good notes.

We are greatly supported by everyone’s offers of help, messages of support and prayers.

Sunday. They let us bring Isita home from St Mary’s yesterday afternoon as we only live 10 minutes away. Her bed is open for her if we need to bring her back. The main reason would be if the regular doses of ibuprofen and calpol stop working and it starts to hurt too much.

We have everything packed up just in case, and yesterday evening we were about to go back, but then she settled and we all slept well last night. When it doesn’t hurt, she is very bright and happy.

My twin Robert came to the hospital yesterday morning with Marta and Jamie (I had spent the night with Isita). This was very comforting. Jamie went back with Robert to spend the weekend with his cousins in Surrey. He is beginning to realise something is not right and very sweetly asked Isita how she was when we all spoke on the telephone last night.

Marta’s brother Juan and sister Bego came over from Spain yesterday afternoon and stayed with us last night. This is wonderfully comforting. So many friends have offered to help. I am sure we will be calling on you all at some point. Aude left a box with lunch behind our porch for when we came home yesterday. Juan and Bego were amazed that you could do this without it disappearing. It was delicious.