The side-effects of Isita’s current therapy are partly psychological. The drugs induce massive mood swings. She has sudden bursts of total fury which subside as quickly as they flare up. Although we know why this is happening, we still have to tell her that it is not right, not least because she can be quite scary. She had a fit with Jamie the other day for some quite trivial reason which wasn’t his fault anyway. He fled almost in tears and I had to reprimand her. She stormed into her room and slammed the door. A little while later, she came out and wordlessly thrust a piece of paper into my hand, like the haughty heroine of a Victorian melodrama.
She has only just learned to write – probably a little behind the rest of her classmates, but she loves it and puts down whatever is in her mind. Her letter – with the words all run together and spelt however she pleases – read: “I am sorry that I shouted at you. Please make it up to you. When I shout at you I feel pain and regret.” More recently, we have been getting emojis.
It is a tough call being given medicine which makes your head go all over the place, and then to have to spend so much time cooped up in hospital. Currently she is sleeping at St Mary’s Paddington and spending her days here at home, which is a big improvement on the previous three weeks. She was supposed to come home after successfully finishing the fourth cycle of immunotherapy ten days ago.
Unfortunately, during the last 24 hours of the treatment she developed a high temperature. At first, they thought it might be a delayed reaction to the antibodies, but it turned out to be a bacterial infection. For two days she was very feverish and down at heart, as she had been looking forwards so much to going home, seeing Jamie and even spending a weekend down in Surrey. The doctors prescribed some powerful IV antibiotics so by Saturday evening she was much better. On Sunday I took her out for spaghetti al cartoccio at Ciao Bella on Lamb’s Conduit Street (pasta and seafood cooked in a greaseproof paper bag – heaven!), a funfair on Coram’s Fields and a strawberry sorbet which made things much more cheerful.
Normally, once you have gone 48 hours without a fever you can go home or get out of isolation. However, the blood cultures from her central line continued to test positive for the infection, meaning it was in her central line. This is the most dangerous thing of all as the line is placed directly into her aorta so any infection goes straight into the heart and the bloodstream. You definitely do not want to let it get that far. For a while we thought they might have to take the line out and start again. But instead she has been having IV antibiotics three times a day, and for a while they stopped her going outside.
She is far too well to be in hospital and luckily everyone we deal with recognises this. So now the regime has been adapted. The West London community nurses come home once a day to give her one of the doses and then she has the other two at St Mary’s overnight. It was one of the community nurses who noticed that there had been a communication mix-up between GOSH and St Mary’s and that we have been overdosing Isita on the antibiotics for the past few days – not good for the kidneys. Normally that sort of news about one of your children would send you up the wall – and rightly so. But we are so inured to the perils and troubles of this treatment that we just thank God that they spotted the problem and rely on the doctors to fix it. I don’t think we have the energy even to be angry. Maybe we ought to get Isita to write them a letter.