Up and down 

Isita is full of life and happiness. She has taken to frequently hugging her nurses. Her high spirits have been greatly helped by the visits of so many friends from school and elsewhere, even over the bank holiday. Those who have come along to her little domain on Elephant Ward include Elspeth, Isla, Rebecca, Lily Rose, Lola, Ginny and Hannah. John and Benedict also came with Violet and Alex. As it is absolutely certain that Isita will not leave hospital for at least two months, it is brilliant that the world can come to see her from time to time.

Meanwhile, it has been an up and down week of worry and frustration on the medical side of things. Alongside the great bugbear of the tumour, we are still struggling against its sidekick the pesky adenovirus which stubbornly refuses to quit her system. It is blocking the road to the next – and most crucial – stage of treatment. 

The idea was after the bank holiday, if the virus load had fallen, we would go ahead with the stem cell harvest. Or if not, they would administer a new anti-viral drug, or start her on retinoid therapy which increases the chance that the tumour will remain dormant, or both. But one of the conditions for these plan B treatments was that Isita should not have diarrhoea. She didn’t on Thursday and Friday but by Saturday it had returned. This morning we discovered the viral load had increased from 1,600 copies/ml of blood to 5,000 copies/ml. It felt like stepping back or going round in circles.

Marta and I are worried because the longer we delay the start of high-dose chemo the higher the chances are of a relapse, undoing the achievements Isita has made with the induction chemotherapy to date. On Monday morning, she complained of a pain in her hips, something which has not troubled her since the chemotherapy started. It could have been caused by anything and has not returned. By the same evening she was running down the street outside the hospital in her blue tutu and doing gymnastics on the playmat in her room, so it was probably a false alarm. But anyway we are on tenterhooks.

The doctors are looking at everything, and testing everything. All the expertise of GOSH is being brought to bear: microbiologists, gastroenterologists and so on. One of the treatments under consideration is a lymphocyte transfusion. These are the blood cells which fight viruses. From what I understand they would have to take lymphocytes and ‘train’ them in the lab to develop the right adenovirus anti-bodies. Apparently, this technique hasn’t been used before against this type of virus so there is some uncertainty about it. But we are glad they are thinking about it. The doctors say that if Isita can get over the virus then everything else is going to be much easier as most of the negative side-effects she has suffered have been exacerbated by it.

The most encouraging words we have heard in recent days came from one of the nurses, who told Marta that Isita would definitely make it through the treatment because she is such a fighter. She is indeed. This evening just before bedtime, Isita called on Marta’s mobile to say she had done a “proper poo… a sausage”. I am so excited, I could almost put it in a tin like Piero Manzoni. This is what it is like right now, we are swinging from despair to hope every day.

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