Small inextinguishable piece of light

We have been given the outline of a plan for Isita’s treatment over the next month or so. Her current dose of chemotherapy ends tomorrow, but she will stay in hospital until Friday, as they continue with intravenous hydration for one day afterwards. So far, she has borne up better than we expected with the cisplatin, although she vomited violently this morning and brought up her nose tube, which had to be put back in – a procedure she loathes and was very upset about.

On Saturday at home (we hope), the community nurses will start her on a course of G-CSF – lots of injections, something else she hates, poor thing. This is the drug they give between cycles of chemo to stimulate the production of white blood cells. This time, she will be having a stronger dose for at least eight days straight. It will promote the production of stem cells in her bone marrow. When the marrow is ‘full’ these cells will start to flush into her bloodstream. That is the objective.

On the evening of Sunday 7 May Isita will go back to GOSH in preparation for an operation on Monday morning to place a vascath – a central venous catheter for use in dialysis – into the femoral vein in her groin under general anaesthetic. Over the following two days they will harvest her stem cells using a process called apheresis. Her blood will be pumped through a machine which separates it into its different parts. The stem cells will be frozen for later use.

The MRI and radioactive iodine MIBG scans, to establish how well the induction chemotherapy stage has gone, will be completed during the week starting Monday 15 May. The decisions about the next stages in the treatment will be finalised early in the following week. However, if Isita gets too sick as a result of the current cycle of chemo, this whole programme might get shifted back by how ever many days are necessary.
If everything has gone as well as possible, the surgeons will cut out the tumour at the end of May or very early in June. As soon as Isita has recovered, she will get high-dose chemotherapy which will kill all her bone marrow, and with it her immune system. The previously harvested stem cells will then be returned to her. The recovery from the surgery will take two to three weeks in hospital, plus a further five weeks or so after the high-dose chemo. We would start radiotherapy in mid- to late-July. This is plan A.

It is possible that the surgeons will decide the tumour is still too big, or is in an awkward place i.e too close to a kidney or a major blood vessel. In this case, they may decide to swap the order round and to do the high-dose chemo first, as this will shrink the tumour. This is plan B.
It is also possible that the MIBG scan will highlight remaining metastases that the induction chemo has not cleared out. In that case, they will prescribe additional chemotherapy before moving on with plans A or B. This is plan C.

It is good to know there are options. Plan C adds an extra obstacle to the course which would make it a bit harder. But it is not a race. There is no prize for completing it more quickly. The end-point remains the same, and the key is that the treatment should be effective rather than rapid. Naturally, Marta and I feel intimidated by what is to come. We are introducing Isita to each stage as it approaches so as not to create worries she cannot handle. It is gruelling with a lot of hospital time and a great deal of uncertainty.

However, it is important to recall that there has been no fundamental aspect of Isita’s treatment that could have been done better or differently. All the results and indications have been as good as they could have been. The protocol she is being treated under has had excellent results. She has received the full dose of chemotherapy at each stage. Medically, everything is as we would wish it. Spiritually, it is too. We are surrounded by love and prayers, and Isita remains that small inextinguishable piece of light that my late uncle Piers’ sister-in-law Suzy told me about at his beautiful memorial service yesterday.

The fifth and final?

Isita started her fifth and, we hope, last cycle of induction chemotherapy yesterday evening. It will conclude on Thursday. So we are in with a chance of getting home for the bank holiday. The drug she is on this time is called cisplatin, the same as the third cycle which made her feel very bad. So the next few days probably won’t be great for her.

Having said that, the first 24 hours has been OK. She was a bit sick earlier this afternoon, and grumped at Tante Joosje for turning off the telly. Before she fell asleep she was happily charming the nurses, whom she knows very well by now. 

She has been on great form for the past week including the weekend we spent at home. Thank heavens the  doctors postponed the start of the treatment from Saturday. I don’t know whether this was to give them or us a break over the weekend. But we took the chance. 

We ate dairy-free pancakes on Saturday breakfast, dairy-free croissants on Sunday (hours of pastry-making), potato salad for lunch. And then we draped a sheet over the bannisters and put Disney’s Moana on the digital projector. The story of an intrepid young girl who doesn’t give up seemed just right.

Marta saw the full team of doctors yesterday. They are pleased with how Isita is bearing up. Contrary to our expectations they have given her the full dose of chemotherapy. This must be good, even if it means she feels a bit worse for a short while. They will start the major tests in three weeks – an MRI and a test using radioactive dye which will show up any cancerous cells elsewhere in the body. 

Only after the results can they say how the next steps will go. The best case is no metastases and the tumour small enough to be cut out easily. But if it is too close to a kidney, for instance, the surgeon may want more chemo to make the job easier. There’s no point in worrying too much about that. They great thing is that we are getting to the end of the first stage of the protocol with Isita in good shape. 

Happy Easter everyone 

The situation here at GOSH is not too bad although we wish we were at home. Isita hasn’t had a temperature for two days and is pretty lively. We all went out for fajitas (although in the end she didn’t eat much). Simply putting her in the buggy and taking her out for a couple of hours was a great boost to morale. Jamie had spent the entire week with his grandmother and various cousins in Shropshire and in Surrey, which he loved. So he and Isita were thrilled to see each other again, even though they express this best by watching TV together on her bed.

The most troubling aspect of Isita’s condition right now is that she gets frequent and intense stomach pain and she still is suffering from diarrhoea. Whether she has an inflamed gut because of an infection or simply because of the cumulative effect of the chemotherapy we don’t know. Apparently, it is not uncommon by this stage in the treatment. We have met the parents of a boy who is about a month ahead of us, who said that he had sharp stomach cramps towards the end of the first phase of chemo. The doctors are looking into it. In the meantime, she is back on pain-killers.

As we become familiar with the side-effects of the treatment, we understand more why the treatment of Isita’s fevers has followed the pattern it has. While it seemed obvious to us earlier this week that the adenovirus had made a comeback – and she is now being given the anti-viral drug – the doctors are not able to ignore the potentially lethal threat of a bacterial infection. They have to treat the most dangerous threat first, even if they are not sure it exists.

This time, they have got on top of the problem much more quickly than before, and she is putting on weight. We are reconciled to the likelihood of spending much more time in hospital than at home between now and late July.

We have come to realise that Isita is particularly sensitive to the toxicity of the chemotherapy. If only it were the case that the tumour was also more susceptible as a result. Depite the fact that it is genetically part of her, there is no evidence of that. Never mind. The focus now is to get her through the fifth and final cycle, which is due to start in six days’ time. Closer to the time, the consultants will decide whether to reduce the dosage. Obviously, they want to give her the maximum she can handle, but they don’t want her to fall apart. We are sure they will make the best judgment.

This question draws our minds forward to the next steps. In  mid-May, they will carry out an array of tests to see how well the treatment has gone. Ideally, she will not need extra chemotherapy and they will move on swiftly with surgery. She needs to be ready, which is why less chemo might be better next time. Marta and I are focused on keeping Isita strong, as we have been since the beginning. That is all we can do.

Parent sense

I am afraid this is one of those occasions when our sense as parents of Isita’s condition should have trumped medical protocol. Thanks to Marta’s insistence she was transferred back from St Mary’s to GOSH this afternoon. Tomorrow she will resume the anti-viral treatment that saved her last time. 

As the loss of appetite, loss of energy, temperatures and diarrhoea have slowly worsened over the past few days we have been telling the doctors in Paddington that the symptoms match what she had before. Clinically, they agreed with us, they said. But they wanted the results of blood tests before prescribing the anti-viral treatment again.

I don’t really know why this was: concern over the side-effects, focusing more on bacterial infections, strict adherence to the rules? Whatever the reason, it feels like we have wasted several days, and allowed the virus to take hold again – an outcome that we all knew was possible. Now the situation will be dealt with, which is a relief. But there is no way we will all be at home for Easter.

St Mary’s again 

Inevitably Isita is back in hospital. Marta brought her in after lunch on Sunday. She started getting warm the night before, but did not reach the trigger temperature of 38.5 celcius which requires an immediate trip to St Mary’s. We gave her calpol and hoped without expectation that it would go away. Poor thing, her resistance is so low after the chemotherapy, one might as well try to hold back the tide with a mop. The lovely community nurse came,  wormed the story out of us, and apologetically sent us in.

The good news is that Isita has remained bright and cheerful, she hasn’t lost much weight thanks to the feeds through her nasal-gastric tube, which are going very well after the dreadful struggle to get them started, and we have a room with a view over Paddington Basin.

However, her temperature is now spiking above 39 degrees every six hours as the calpol wears off. The nights on Grand Union ward are tiring, not only because of the frequent bleeping of the pumps, but also because we hear everything in the corridor; the alarm that repeats every time someone calls a nurse, and last night the furious shrieking of another wretched child that went on and on. Isita yells when she has injections, but not like that, thank God.

Our little break at home was blissful. We went to the park, had lunch all together round the kitchen table, played games. I hope we’ll get Isita back to that very soon. She needs to start getting better today or tomorrow if we are to be out for Easter.

Seven pumps

The GOSH team have set up a complex combination of chemo, fluids, nutrition and anti-sickness drugs. Even we, who are used to it, are quite impressed.