Everyone has been very kind about Isita’s hair falling out. I am glad to report that she has accepted this. Now that most of it has gone she doesn’t seem to mind so much. She likes her hats, and she looks sweet.

As I write this, I am sitting in her darkened bedroom in GOSH waiting for her to go to sleep. Despite the fact that it is nearly 10pm she is buzzing, and hungry. Earlier, she had seconds of hot chocolate fortified with dietary supplements plus a couple of dark chocolate truffles. Now she is asking for bread and honey, olives and  dried mango.

I’m desperate for her to drop off, but at the same time if she wants to eat… Also, I am quite proud that Marta and I have got Isita back here in for the second round of chemotherapy in such good shape.

In the past week, she has put on weight and avoided getting the flu which Jamie went down with last Friday. We carried out a manic hygiene regime, a bit of quarantine and did tons of laundry. Even with all this, it felt happily normal if a bit exhausting. I even managed to go back to work.

The nurses are popping in quite often to set up all the drips and Isita prattles away with them about whatever is in her head. She spent the last five minutes telling the nurse who came to check the chemo how “my brain tells my mouth to move and I have to move it”. And so it would seem.

Now, as she pops another kalamata olive in her mouth, she has been asking me what ‘ruptured ‘ means. Apparently someone in the Barbie episode she watched earlier said ‘I think I have ruptured my spleen’. Who knew it could be so educational?

Unfortunately no one else can come in to swap word definitions with Isita for the time being,  as the ward is under a kind of infection control lock-down to protect patients against the norovirus that is going around – probably just what we managed to dodge at home.

Isita’s hair has started to fall out. She woke up a couple of days ago with tufts coming adrift and now looks like an angelic midget whose comb-over has got in a muddle. It happens so quickly.

It is not a flattering moment and up to a point she has been remarkably unfazed by it. That point was when she saw herself in the mirror this evening while brushing her teeth. Before that she had felt her hair thinning, and seen the tangle of golden floss pile up in the tin box (for collection by the hair fairy), but not not fully linked these things with a change in her appearance. It seems that all the amazing preparation by the play specialists and nurses at GOSH couldn’t prepare her for that. 

She has known for weeks that she will become totally bald, and accepted it trustingly as she has accepted so much else. She has a bald barbie and a bald stuffed lion. So, perhaps when she has lost all her hair it will be easier. But no matter how beautiful she is in our eyes, and how much we told her, this evening she could not see past her wispy scalp.
The hats Marta has bought made her feel better and less self-conscious. She went to bed in a pink woolly number. Tomorrow, we will go through my hankie drawer to find her some silk spotty bandanas.

Isita is back home. The doctors eventually found the missing blood samples which the lab had mislaid yesterday. They came back negative. In fact, a urinary tract infection was the cause of the original high temperature. They found it in her wee. They were very pleased to have identified the cause, as often it remains a mystery. They also said we should get used to this, as something similar is likely to happen between each bout of chemotherapy. For now, we are thrilled to be back in our own beds.

It was another very social morning at St Mary’s, what with visits from the hospital educationalist, followed by the physiotherapist, the dietician, the occupational therapist, the nurse with various medications, a plain old doctor, Kate who will now do lessons with Isita every day, and my mother, who brought lunch. 

Isita was in her element with all the callers. Although her blood counts are low and she is clearly consuming huge amounts of energy dealing with the chemo (The reason for her weight loss), she looks very well. In the late morning she started a blood transfusion which has left her looking and feeling much more bonny and rosy-cheeked. 

The business of feeding her up continues. Just before I left in the early afternoon, she tucked in to a ‘fortified’ ham sandwich i.e. spread with about an inch of margarine. Unfortunately I think she is like me. Nothing she eats can make her put on weight.

We hope she might come home tomorrow, and on the face of it, she is well enough. But it looks like the lab has lost her blood samples. They retook them this morning. This will keep us in for the whole extra day.

Both Marta and Isita slept well at St Mary’s last night. After antibiotics, Isita no longer has a temperature, ate a good breakfast of weetabix, and has since been holding court. Rosie was in this morning, then Kate, her former nursery school teacher who is going to be helping with lessons, and then Aude with lamb pilaf. 

The docs are doing some blood analysis to see if Isita needs a transfusion. They are also checking her weight which appears to have fallen. We are hoping it is an error in the scales. But it could be that despite our best efforts she isn’t putting on weight. Whatever happens she will be in hospital tonight and all of tomorrow until they are sure she is OK.

L

After several days during which it has been almost possible to forget about the wretched lump in Isita’s stomach, she has had to go back to St Mary’s Paddington. This evening her temperature was nearly 38.5 C. This is above the level that the doctors want us to take her back into hospital to administer antibiotics and to ensure that she has not suffered an infection on her Hickman line (the wiggly). 

It is hard not to be dismayed about all this, particularly at the end of a comparatively easy weekend. My brother Benjamin and his family came to see us yesterday, bringing a late Christmas present for the whole family – a swingball set. This is something else for Isita to look forwards to as soon as she is more active. The past days have also been enlivened by the visit of Marta’s cousins Sole and Belen from Spain.It was only this afternoon that Isita started to look a bit peaky, although she has been complaining again about pains in her stomach and hip. After lunch she was well enough to take a ride in the buggy (lent by Christina) up Portobello Road, where we got her passport photos taken. They do say, that if you look like your passport photo you are not well enough to fly. In Isita’s case this is literally true.

The community nurse who came this afternoon said that the effects of the chemotherapy often start to show after about a week to ten days. This is why Isita’s haemoglobin count has fallen over the past few days. If it goes much lower, the nurse said that a blood transfusion would be necessary. Her low haemoglobin levels mean that she probably also has low neutrophil levels. These are the white blood cells which function as part of the immune system. The nurses have been coming every day to inject Isita with a drug to boost neutrophil production. So in the next few days the numbers should start going up again. If all this means that the chemo is fulfilling its main function, then we should be happy.

Isita is enchanted by a soft purple bear, complete with golden wig and tiara that sings the hit song from Disney’s Tangled – ‘I see the light’. She has been singing along to it in bed for the past hour.

This gift came this afternoon in a large box from my great friend Amine, his wife Dorota and their son Kyle.  What makes this more impressive is that Amine has been unjustly detained by the Algerian government for more than four years. Dorota, here in London, is fighting hard for him to be allowed to return home, with little support from the British government. We are very touched that in the midst of all their own difficulties they have had the time to think of Isita.

We are loving having Isita back at home. She is a bit under par first thing in the morning, but otherwise on great form, and eating pretty well. We had a chatty lunch with my mother and then she had chocolate cake this evening – a belated birthday celebration for Marta. 

We have had to sort a lot out: medication, appointments with the community nurse and so on. I even managed to get on my bike and go to the office. By the time I came back our wonderful friend Christina had completed a true Mary Poppins style tidy-up of the children’s rooms.

We are in a minicab going home with Isita right now! She is in good shape (asleep on my lap, the darling).