Today Isita recieved her final high dose of chemotherapy. There is no more chemo scheduled in the protocol. Her stem cells will be transplanted back into her on Tuesday and the effect of the drugs will be strongest in her body towards the end of next week. It will take at least four weeks for her to recover.

The doctors are pleased – even surprised –at her progress. She has a tummy bug, but not one that can get into her blood. So nothing to worry about. Apart from that, she is in a better mood and no worse shape than when we started five days ago. This may be because we have all got used to the new regime and have worked out a pattern. Marta and I are more relaxed than we were, and that helps.

Of course, she still has an occasional sulk, like this morning when I took the plastic salt cellar from her new toy kitchen and sprinkled imaginary salt on a collection of plastic vegetables. How was I to know they were pretend cupcakes for Lola the fairy? I ruined them and everything had to go in the (pretend) bin. It’s no use saying it’s only make-believe, she was genuinely angry for five minutes.

Now that about a month has passed since anything but water passed Isita’s lips, most of her play, iPad games and YouTube watching revolves around ice cream, pizza, and any kind of cooking. She has compiled a detailed list of what she is going to eat once she is allowed. It is certain, however, that we won’t even try to wean her off the intravenous nutrition and back on to actual food until the four week recovery period is over. It is not much of a consolation that in a week she may feel too sick to want to eat. This is as hard as anything else she is going through.

Today has been a small exception to the no eating rule. The final dose of chemo has been a tiny amount of a very powerful drug. They gave it over just 15 minutes this morning. It can cause painful sores in the throat and stomach. One way to mitigate or prevent this is ‘cryotherapy’ – or eating ice lollies as it is otherwise known. We made them last night amidst great excitement. They are incredibly diluted, but maybe not to her tastebuds. Ice lolly therapy!

The high-dose chemotherapy started yesterday afternoon. It is early days so in some ways, nothing has changed. We are in the same room. Isita is still well. It will get tougher from about this time next week.

We have tried not to convey our worries or concerns to Isita. She knows she is getting new medicine, but not much more at this stage. I expect she has picked up the change in rhythm though. Marta and I are looking after her more. We are back to the nights of the beeping machines. She gets the new chemo drug for two hours every six hours followed by multiple blood tests. It is hard work for the nurses.

All these external factors may be making a difference, or perhaps the chemo is making her feel less good. She is a bit tired and sometimes fretful. Maybe I am as well. We had an argument today over iPad apps. That doesn’t happen very often.

None of us are looking forwards much to the next few weeks, with the possible exception of Jamie who is just about to go to Mallorca, the lucky devil. We’ll miss him, although he’ll have a superb time with his friend Harry.

The great thing is that we are all trying our best. Before I left Isita with Marta in the hospital just now she gave me the biggest hug and nuzzled the top of her head – now covered in in a fuzz of new hair – under my chin like a dog. We are doing alright.

It has been an intense week of discussions, tests, and waiting for results at the hospital. This afternoon the specialists confirmed that Isita’s tumour has remained inactive during the two and a half months since she last had chemotherapy. The bone marrow aspirates and trephines were clear, and so was the MIBG (radioactive dye) scan, which Isita had yesterday. There has been no return of the metastatic disease which the earlier course of chemo eradicated. This is the best news possible. It means the original chemo was effective and that the neuroblastoma may be less aggressive than they first thought.

Last week, against the odds, they collected enough of her stem cells to make an eventual auto-stem cell transplant possible. Taken together these two things mean that Isita can now go on to the high dose chemotherapy part of the treatment. This is greatly encouraging as completing every stage of the protocol will give Isita the best chance of clearing the cancer and staying free of it. But while we are happy to be going ahead and optimistic about the outcome, it is going to be a hard and even unpleasant course of treatment. We are bracing ourselves to help Isita endure and survive it.

The drugs will be administered over six days starting – in doctor jargon – on Day Minus Seven: probably Tuesday 11 July. Isita may not feel that sick to start with. The toxicity builds up in her body day by day. Her stem cells will be transplanted back into her on Day Zero, so Tuesday 18 July. We have been told that the worst part of the treatment during which she will feel utterly dreadful will kick in on about Day Four and last for about ten days after that. This is the key period when the replaced cells have to engraft themselves back into her. We will know whether this has been successful at the end of July or early in the first week of August. Assuming everything goes well, she should be fully recovered two or three weeks later.

During the worst period, Isita is likely to feel extremely sick, and may also be in pain. She will be on a morphine drip. There is also a possibility of more serious side effects including an unpleasant liver complication. The most serious dangers will be bacterial, fungal or viral infections while she has no immunity. Any of these could be fatal. We will be doing everything we can to keep them at bay. According to the global statistics, there is a one in 20 chance that the treatment will kill her – that is the number on the consent form I signed a few days ago. 

Isita has shown herself to be sensitive to the chemotherapy drugs, so it seems likely that they will make her feel pretty bad. But as our consultant Giuseppe told me this morning “she is very good at bouncing back”. The nurses on Elephant Ward never tire of telling us what extraordinary spirit and life they see in Isita. We have all seen an intrinsic force within her which fills us with both pride and hope. At this stage, her determination, combined with the care and expertise of GOSH and the support and prayers of her family and friends are much, much more important than numbers.

Marta and I expect that we ourselves will have to be with her for much of this time – assuming we are free of infections. We don’t really know how the regime is going to work until we get into it, and we will definitely call for help if we think we need it. With Jamie away on holiday for much of the period, it may be that we need company during the evenings when we are not at Isita’s bedside. Or maybe we’ll just need sleep. We’ll let you know.

The stem cell harvest finished on Friday afternoon just before Isita’s party. Marta and I had steadily fortified and prepared ourselves for the likelihood that we would not gather enough, and the harvest would have to be repeated after a further dose of chemotherapy. We consciously readied our minds not to get to the top of the stairs and once again to tread into empty space.

As we were settling back down in Isita’s room on the ward after the party, the specialist nurse Aylish poked her head round the door to tell us that in total they had gathered about 3.5m cells. This was less than ideal but much more than expected.

This means we don’t have to repeat the harvest. Isita needs no more injections. (You can imagine how happy that news made her.)  Most importantly of all, we have overcome the hurdle that has prevented the treatment from going forward for nearly two months.

While this is a wonderful achievement, we must still be cautious in our hopes. The results of the bone marrow aspirates and trephines they did two days ago, and the MIBG radioactive dye test planned for next week, must show that no metastases have reappeared. Only then can we go on with high dose chemotherapy. 

All being well we will start on Monday 10 July. In the meantime we are anxiously watching for signs that the cancer has started to spread again. If so, we can deal with it. For now, we are celebrating Isita’s indomitable bravery in getting through the past week so well.

The Rays of Sunshine children’s charity organised a fantastic party at the Guides Hall at Coram’s Fields to make Isita’s wish come true.  They could not have done it better. Wonder Woman ran the show, getting all 36 children to dance and sing. The TV magician Jamie Raven enchanted Isita with the coolest ever fork-bending trick, and some baffling card tricks. Her smile was a mile wide.

Isita arrived fashionably late to her own do,  as when it was due to start she was still in bed with the vascath in. The nurses worked incredibly hard and quickly to take it out and get her ready. Shirlei, the play specialist, who set the whole thing up with the charity, was a ministering angel.  

• About an hour after Isita was disconnected we whizzed her round the corner in a wheelchair. Being a girl of spirit, and dressed as supergirl, she insisted on walking into the hall where her friends were waiting. To everyone who made it happen and to everyone who came – thank you so much. 

 

Isita has started her stem cell harvest. Her blood is even now being fed into the apheresis machine, a centrifuge which separates out the red cells, plasma and ‘buffy coat’. This strangely-named last bit made up of white blood cells and stem cells is what they are collecting. 

It is touch and go whether they will get enough. The tests carried out over the past couple of days were on the borderline. Encouragingly, this morning’s white blood cell count had increased strongly. This is a good sign but we are still waiting on more precise tests about the actual stem cell levels. We will know by six o’clock this evening whether we have to repeat the process tomorrow. 

If after two days, they still need more, we will shift to plan B, which is to administer a light dose of cyclophosphamide – one of her chemotherapy drugs. This will initially lower her white blood cell and stem cell counts, but as her body activates to replenish them, the addition of further GCS-F hormone injections should cause her to over-shoot – making another harvest possible in about 10 days.

The situation right now is better than it looked earlier this week when we were disappointed not to be able to go straight ahead. The prospects have improved thanks to some more GCS-F and the addition of a further drug which helps to release the cells. The poor nurses had to wake us up at midnight and six to administer these injections to the minute for best effect. Isita was immensely brave, as it would have been a pretty rotten experience even for an adult.

It has not been the best couple of days for the poor girl. Not only because of this continued series of injections which she hates and fears, but also because she had to go under general anaesthetic yesterday for the vascath insertion. At the same time, the surgeons carried out new bone marrow aspirates and trephines – bone samples – to check that cancerous cells haven’t started to spread through her body again. The trephines are uncomfortable for the first day or so and the vascath is a bit gruesome.

On the positive side, Isita has her ‘bravery party’ tomorrow afternoon. This has been arranged thanks to the generous intervention of the Rays of Sunshine charity which grants wishes to seriously ill children. Isita missed out on a proper birthday party in February because she was at St Mary’s and feeling pretty sick at the time. So she wished for a replacement. This amazing charity has arranged everything. If – as we think – she has more apheresis tomorrow, she will go straight from the treatment to the party. Everyone in the hospital knows that the party is non-negotiable, as all are agreed that for keeping her spirits up it is an essential part of her treatment.

Nothing about this treatment is simple. This afternoon, the specialist nurse who deals with bone marrow harvesting told Marta that the GCS-F injections they have been giving Isita since Friday have not stimulated enough stem cell production to do the harvest tomorrow.

Sometimes the level spikes after a few days of the drug, so it is not impossible that we will get a better reading tomorrow and go ahead after only a day’s delay. Perhaps more likely is that they will have to take another approach, including giving Isita a relatively low level dose of chemotherapy. It seems the GCS-F can work better when given straight after chemo. This could take a couple of weeks. Isita’s doctors are consulting with the transplant specialists so we will get a better idea very soon.

Ooof. We thought we were on the way, but not quite. It is like treading on the stair that isn’t there. For a while these sudden changes in fortune leave us feeling quite unbalanced, but there is no choice other than to deal with the problem and to soldier on. 

As this afternoon’s operation to insert the vascath was cancelled, Marta had the brilliant idea of bringing Isita home. We blew up the paddling pool, wrapped her middle in cling film so her dressing stayed dry. Then she and Jamie splashed about in the evening sun. 

Even better, Isita’s class teacher Abby Millen happened to be walking by, so we were able to congratulate her in person for her heroic swim at Henley. She raised a fabulous amount of money for neuroblastoma research and GOSH. Many thanks to her and to everyone who gave money.

Isita will start her stem cell harvest on Tuesday. The second viral load test came back yesterday and confirmed that she is free of the adenovirus. Nevertheless, she will continue to have the brincidofovir anti-viral drug to prevent any return during the stages of high-dose chemotherapy when she has no immunity. 

The schedule is as follows. Over the next few days she is having daily injections of the GCS-F hormone which stimulates stem cell production. On Monday, she has a small operation under general anaesthetic to insert a vascath in a vein in her groin. This is the tube which will connect her to the apheresis machine, which is a bit like a dialysis machine, but which separates the stem cells from the red cells and plasma in her blood.

If they don’t get enough stem cells on Tuesday, they may continue the collection on Wednesday but normally that isn’t necessary. On Thursday, they will do another MIBG scan – the one which checks whether any metastases have reappeared since the last time she had chemotherapy. If we are all clear, then the high dose chemotherapy will start on Monday 3 July. Otherwise we revert to plan B. This means we have one more week during which Isita can get out, come home and have a bit of fun before the treatment gets heavy again. We are going to make the most of it.

That’s what the test said. Adenovirus load zero. The doctors are so amazed they’ve asked for a recount. Let’s hope it’s right. Surely? Surely!

Not a morsel of food has passed Isita’s lips for more than 10 days. She has borne it like a trouper. Every afternoon for the past three days, as soon as she has been released from her intravenous drip she has gone wild at George Irvin’s Fun Fair in Coram’s Fields. This evening she took her grandmother Coucou on the bumpercars, and after a rather uncomfortable ride offered to help her out of her seat. The lovely people running the rides have mostly refused to take our money and gave us loads of free tickets when they saw she was from the hospital.

The gastroenterologists are soon to start a gradual process of reintroducing food to her system. Although she is receiving all the nutrients she needs through her hickman line it has been very hard not to eat – and she quite often feels hungry. This nil by mouth regime has been exactly the right thing, however.

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​Isita has been on the new anti-viral treatment since last Tuesday. She has had two doses and so far she hasn’t suffered from the main potential side-effect whch is diarrhoea. The fact that she had diarrhoea before was the main reason they couldn’t give it to her weeks ago. So we have had to be strict to allow her body to absorb the drug so it can have the fullest effect. The doctors expect that it will take about two weeks from the first dose to clear the virus completely. We are, of course, hoping that it will happen more quickly but we must be cautious.

On Wednesday last week, Marta and I sat down with Isita’s consultant oncologist Giuseppe, who talked us through the current plan from first principles. It took about half an hour, but was the summation of weeks of thought and analysis. In every step and judgement the evidence of this incredible team’s judgement, consideration and hard work was evident. There is no need to rehearse all the permutations and alternatives that they have considered and rejected.

The most important point is that the current plan has one major risk, which is that at some point, after so long without having had chemotherapy, Isita’s tumour will reactivate and the metastases will regrow. There isn’t any way of knowing whether this has happened until they do another MIBG scan just before they start high dose chemotherapy. High dose chemo doesn’t work very well on children who have metastatic disease, so if it has reappeared, we will have to take a big step back and repeat part of the induction chemotherapy that we have already done.

This would not be welcome, but would not be a disaster either. The induction chemo worked very well and should work well again. In about six weeks we would be back again at the point we are now approaching. But with Isita’s stem cells safely frozen in the bank, we could go forward without delay. There is, therefore, a plan A and a plan B which deals with the most important risk. The second route is longer but the destination remains the same. This is immensely reassuring.