Fun fair at Coram’s Fields

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.

One thought on “Fun fair at Coram’s Fields

  1. We , Charles and myself, have an offer. The last weekend of September there is the fifth Chamber Music Festival at Hatfield House, 2 or 3 concerts per day, Google it. Choose your concert/s and we will send a car to pick you up, and if you don’t feel like spending the night, it will drive you back. Just an afternoon or evening of wonderful music in a wonderful setting? There is time to. Let us know. Isita permitting of course, but am sure she will…. 😘😘😘😘


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