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.
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.
Isita’s class teacher Abby Millen has been coming into hospital regularly over the past six months, bringing news, good wishes and creations of card, paint and glitter from her classmates. She has also been coordinating with Kate who comes to teach Isita every day so that she is still in touch and making progress. Most recently Miss Millen came in with a book full of photographs and messages from the whole class showing what they have been up to. Because Isita is so well right now she may even be able to spend bit of time in the class with all her friends next week.
Abby Millen is doing something even more amazing. On 25 June she is swimming the Henley Classic at dawn to raise money for GOSH. This involves swimming the River Thames upriver along the rowing course early in the morning of the regatta’s first day. She has told us that she wants the money to be directed into areas which will help Isita, so the money will help advance research into the treatment of neuroblastoma and also to support the system of play specialists who are so important for keeping the children’s spirits up during long stays in hospital.
It is most certainly in our interests – as well as those of every other family in our situation – that research is well-funded and advances as rapidly as possible. In the UK, only 100 children a year are diagnosed with neuroblastoma, 25 in the Netherlands, and similarly small numbers elsewhere. This isn’t a disease which attracts the attention of big pharma. Nevertheless, huge advances are in the offing. The immunology and antibody therapies which are currently being developed will eventually provide hope even in cases where a successfully eradicated cancer has relapsed.
We are in an incredibly fortunate position of not having to raise money for Isita’s actual treatment, because it is on the NHS. Even if we do have to go private at some point it – most likely for the immunology at the very end – it will almost certainly be covered by our health insurance. So, we don’t have to think about the bills, and of course we don’t get told what they are. Every so often we get a hint of what is involved – for instance the new anti-viral drug they started giving Isita on Tuesday was couriered specially from specialist drug manufacturer in the US which has released it on compassionate grounds. It isn’t available in the UK otherwise. Lord knows how much the chemotherapy and stem cell harvesting and everything else will have cost by the time we are through.
We are extremely thankful that we live in a society with an advanced form of social insurance to support us through this, and also to be treated in a hospital as brilliant as GOSH. Once this is all over we will certainly be helping to raise money for it. I am thinking of entering the Boston Rowing Marathon in my single scull in September 2018 (that’s on the River Witham in Lincolnshire not the Charles in Massachusetts in case you are wondering). But the sooner new advances in treatment are made the better. So support Abby Millen now!
It is immensely difficult for us to keep our patience and calm in this period of waiting. As the doctors have discussed Isita’s case with us, our realisation of how complex it is has grown. We are no longer in the standard protocol for treating what is already a difficult and complicated disease. Isita has, for instance, fallen out of the medical trials that she was originally participating in, because her treatment has breached the parameters. This is an uncomfortable feeling. The fears and the risks are ever present in our minds. But despite everything, Isita is indomitable and has attracted huge admiration on Elephant Ward. Last night one of the nursing assistants was telling me how much Isita makes her laugh. “She’s an inspiration!”
Although it may be quite dull to have a father banging on about how amazing his daughter is, in this case I have no choice but to continue. It seems nothing can get her down. She is now on the third or perhaps the fourth day of ‘nil by mouth’ – water only – a treatment which the gastroenterologists hope will give her shattered gut time to recover and repair itself. She gets all the nutrients and energy she needs through her intravenous line. Of course, she is hungry. Even so, she remains the happy cheerful girl who bosses the nurses around and who impresses everyone with her ability to handle whatever hospital life throws at her.
When she gets off her ‘TPN’ every afternoon we take her down to Coram Fields to swing as high as she can on the swings and to zoom down the zipwire. Over the past week, Marta and I have had difficulty in reconciling the energetic fighter whom we see every day, with the fragile medical conundrum that the doctors see in their analyses of blood, urine and stools. In general, we have decided that we see her better.Happily, it seems that we may now be returning to a point where medical decisions can be taken and advances made in her treatment. Alongside the fundamental objective of eradicating the tumour, we have to get rid of the last traces of adenovirus, fix Isita’s guts and allow her kidneys to recover more of their function.
Today we were told that a more effective anti-viral drug with fewer side-effects is even now on its way to GOSH from the USA. Once it is administered, it may take a couple of weeks to complete the job. The medical team may decide that Isita should continue ‘nil by mouth’ to reduce the danger of a recurrence of diarrhoea during this period. Or they may permit a very strict and gradual return to eating. The kidneys must be allowed to recover on their own.
As we are now more than a month away from the last cycle of chemo, they may decide to put her on another cycle simply to keep the tumour from reactivating. We should see movement in most of these areas over the next few days. It is certain that the main steps towards the stem cell harvest and the administration of high dose chemotherapy won’t be taken for at least a fortnight.
P.S. Jamie is a very cool elder brother. J.
Marta just called home with the latest update from GOSH. The adenovirus count is down from over 800 on Saturday to 600 today, Tuesday. This is progress in the right direction.
On Saturday I took Jamie fishing in Hampshire with his godfather Charlie.
Marta was with Isita, her sister Bego and brother Juan who had heroically flown over from Seville on Friday night. Thanks mostly to my own incompetence I didn’t catch anything, but Jamie went swimming at least three times and had to have his clothes dried out in the plate-warming oven. It felt wonderful to be on the banks of a trout stream with some of my oldest friends and their children.
Even better was when Marta called to say that Isita’s adenovirus level had fallen to just over 800 copies/ml of blood. This is such a good fall, that it has raised the doctors’ hopes that she may be able to eradicate the virus without needing further medication.
Let’s hope that is the case because on Sunday morning the diarrhoea came back. We have been contending with it over the past two days. It remains a puzzle in that we do not know what has caused it, and this is massively stressful because it makes us unpick everything we have done with Isita, such as taking her out of the hospital, to see whether it is something we could have prevented or could prevent in the future. Is it somehow our fault?
The doctors say no and that is probably right. We are trying to take as much care as possible but it is not easy. Isita is hungry and full of energy. It is hard to restrain her from eating too much or too quickly, particularly as we have spent the past five months begging her to eat whatever she wants.
One thing we do know – which is good news – is that Isita’s upset stomach is certainly not caused by the adenovirus,. This means that this new onset ought not to stop the virus load falling. We will learn whether that is the case very soon..