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.

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