Lots of small steps 

In the end, we didn’t tell Isita about the two week deadline for getting out of the hospital. The chances of not making it are too high. Instead we have gone for a series of smaller steps, starting with a couple of trips to the hospital’s Morgan Stanley Garden over the bank holiday. 

She can’t be disconnected from her pumps yet, so on Sunday Darryl and Hannah (whose last day it was on the ward) escorted her down. We made a daisy chain, pulled funny faces, and then the nurses each massaged one of Isita’s feet with hydrating cream while I held the iPad. Talk about being pampered. Marta and the nurses took her down again on the Monday.

The next step is to try and disconnect some of the medicines, and then to get an hour or so of free time each day. We have also started daily physiotherapy, which she does unbidden (that’s grit for you).

She had taken on the idea that this is the way she will eventually get to do all the things she wants to. Yes, to go home, but before that to slide down the big slide at the Coram Fields play ground.

She is making tremendous progress on all fronts. The doctors are delighted.  She not only looks better and is more cheerful, but her blood counts and other technical indications are all strongly positive. Although she still has episodes of pain they are less frequent. We have started to dial down the morphine and ketamine. The medical plan is still that the current array of treatment will allow her gut to heal itself. Sooner or later we will all be at home again.

An arbitrary deadline 

We have a target, an aspiration, a hope, a prayer which is to get Isita home in about a fortnight. Before treatment starts again we might have a good couple of months of home-based recovery. We can’t be sure it is possible. The doctors say it might be about right, and they are as keen as we are to get her out of the hospital.

Isita herself is desperate to be free, to have fun with her brother and cousins, to eat something, to even swallow a gulp of water without it turning her stomach. Every day something shows that she is a bit better. The return of appetite is a great signal in itself. We, and everyone on Elephant, are all thrilled with her progress. 

For her, however, the main effect of the improvements has been to make her more aware of what she cannot yet do. This has been especially poignant as Jamie turned seven yesterday and had a lovely celebration with his cousins at Betchworth. She wanted to be there so much.

Hunger, frustration and anger can be useful feelings , or so we hope. In her they are combined with determination. And so we come back to our arbitrary, slightly vague, but hopefully inspirational deadline. We are not just saying to her that she will get home one day, but one day very soon. 

That is why I confiscated the Frozen drinking cup that she had been using to swill out her mouth but also taking sneaky gulps from. Yesterday an over-enthusiastic gulp led to a nasty bloody vomit. We have to be extra strict now so nothing sets her back. She is clever. She gets it. But she doesn’t like it, and why should she?

Best day since high dose

Today has been Isita’s best day by far since we started high dose chemotherapy.  It was a bit of a restless night, and she is still losing blood from her lower bowel, but she has started to enjoy periods without pain.

First thing this morning, as Florence was putting up her meds, Isita was telling us about the marmalade cat she hopes to get, which will be called Daisy, or Pete if it is a tom, or maybe she’ll have two cats. She likes them better than dogs.

It sounds innocuous, but it’s been weeks and weeks since we heard her sweet prattle, until a week ago she wouldn’t speak a word all day. Florence had to nip out to shed a tear she was so moved and some of the other nurses and staff popped in just to get a glimpse of the old Isita whose return we’ve all been waiting for.

One of the greatest tributes to Isita’s spirit is that the nurses all love looking after her so much. Over the past eight months we have, likewise, got to know and love the whole team: Andrea, Annie, Ashley, Carol, Carole, Daisy, Darryl, Emily (who’s just left to go round the world), Florence, Hannah, Hannah, Harriot, Helen, Izzy, Nicola, Rachael, Rachel, Rebecca (who went to the heart and lung ward), and Sara. Isita has been carried along on a great collective effort of their dedicated care, and so have we.

So Shirlei, the play specialist, arrived with glue, bicarb, saline and food colouring and we made slime, some of which I had to scrape off the ceiling. Later Jen came by and gave Isita a mango-scented foot massage.

This afternoon she was grumpy from the pain. It may yet take weeks to fully recover from what the doctor from the gastric team called a ‘toxic insult’ to her lower bowel. The bleeding is reducing. An ultrasound this afternoon showed an improvement. In fact, every technical indicator is improving by the day. The neutrophils, about which we have worried so much, were 5.0 this morning. 

Neutrophils 1!

Already. The 0.74 reading was from last night’s blood count. This one is from 1pm today. Against hospital regulations I have downed one of Virginia’s bellinis – more out of relief than celebration.

I drank it alone as Marta has gone to fetch Jamie from Allscott where he has been with Tia Bego, Tio Luis and his cousins who have been enjoying some fresh Shropshire drizzle as a break from sweltering Cordoba.

Isita has yet to feel the benefit of this positive development — at least while awake. She slept deeply for seven hours straight in a nest we made in the armchair, but we had to wake her for a clean-up, dry bedclothes and pillows. She has been in a lot of pain since, while we wait for a new set of painkillers to be put up. The old ones aren’t covering it anymore. More fundamentally, there is a lot of recovery ahead and some important medical problems to remedy. Still, this feels like a big advance. 

Neutrophils 0.74

Isita slept much better last night and her neutrophils have gone up from 0.35 a few days ago to to 0.74, their highest level since the transplant. The technical target is one, after which she is no longer considered neutropenic i.e. lacking auto-immunity. 

The bone marrow aspirate from Tuesday showed that the marrow is reproducing healthily, no signs of any negative reaction, and re-confirmed the absence of neuroblastoma. She hasn’t had a temperature for 24 hours, and the adenovirus levels are low and trending downwards. So we are on track.

As well as seeing the number of white blood cells increase further, what we also need to see is her body, especially her gut, starting to heal itself. Here there are also positive signs. Yesterday’s ultra-sound showed no deterioration and there is no sign of fresh bleeding. Visits to the commode are much less frequent. She is, however, still in a lot of pain. They are going to try a different opiate to get that under control.

Long haul

We are at a difficult and exhausting period in Isita’s treatment. Last week, we had the sense that we had turned the corner, but now it seems that was just a bend in the road. While there is no doubt that she is much better than she was in the worst period, she has not recovered as much as anyone had hoped.

So far, the reason is not clear. Part of it may be that she is highly susceptible to the chemotherapy. The drugs she has been given were massively toxic: it is called high-dose chemotherapy for a good reason. In a counter-intuitive way, this may not be all bad on the principle of ‘if it is hurting her this much, think how much it is hurting the tumour’. But while the justification for this torment has always been that it will eventually save her life, by now she has surely obtained any benefit that the chemo is likely to deliver.

Isita mood is flat. We coax a rare word and even rarer smile from her. The fire still burns within. She suffers discomfort a lot of the time and severe pain sometimes, which frequent changes to her pain-relief regime only relieve temporarily. She has also been running a consistent low-level fever, and her gut and bowels are extremely sick – with all that goes along with that. She has to go to the commode very frequently and moving hurts her. She cannot even swallow water, but spits up sticky mucous all the time and the nurses continue to syringe large quantities of dark green bile from her stomach. 

The hope was that as her transplanted stem cells engrafted and turned into new bone marrow, her body would start to repair itself. But instead of that virtuous circle of recovery, we are in a vicious circle in which some infection, inflammation or complaint is suppressing the recovery of her marrow. Her neutrophil count has plateaued at a range between 0.35-0.5, when we had hoped it would get above one. Until the transplant is complete, she cannot herself combat whatever is holding her back.

Since Sunday evening, Isita has started to produce quite a lot of blood, meaning her gut is bleeding. This has triggered a change in approach. We have seen the might of GOSH move into action. Yesterday wasn’t much fun because a new cannula was put into her wrist as there was not enough capacity on her double chest line for all the drugs, nutrition and blood transfusions they want to give her. She then had to put up with another drip being put into the muscle of her thigh. 

She has a remarkable number of tubes attached to her, and a corresponding forest of pumps whose bleeping bleeps disturb those parts of the night when she isn’t getting out of bed for another wee. Today she is going down to theatre for a bone marrow aspirate under general anaesthetic. The gastro team paid a visit a few hours ago to explain that they have decided against a colonoscopy on the grounds it won’t show them anything they don’t already know.

Paula, one of the consultants has gone to other experts in the hospital including the microbiology team and the bone marrow transplant experts downstairs. The oncology team have also re-thought her case themselves and come up with a handful of possibilities for what the problem might be. One is a fungal infection – so they have already stepped up the anti-fungal treatment to counter this. It could also be the adenovirus, which is lurking in the background at a low level. Illustrating how complex her condition is, it could also be the anti-viral drug. 

Two other possibilities are blood reactions that cause inflammation of the marrow itself. This afternoon’s BMA will demonstrate whether one of these – Macrophage Activation Syndrome – is present or not. Both are treatable but it would also necessary to find out what is causing the inflammation, which is a bit more difficult. At the same time, they are going to stop some treatments such as those for the occlusion of the liver, which looks like it is under control. They may also reduce the anti-biotics.

Rather than being dismayed by all these possibilities, Marta and I have found it reassuring to have the evident complexity of Isita’s condition addressed in this logical way. When the right treatment is identified, she will get better. It is going to be a long haul though.