Day 11

It has been a dreadful and exhausting ten days, exactly as predicted. But also as predicted we are seeing signs that Isita’s ordeal may be nearly over. Yesterday, Saturday, was day ten. Marta was happy to see Isita perk up a bit. She watched iPad and even spoke a few words. 

The optimism of the day made it all the more shocking when she vomited a lot of blood in the evening. Apparently this wasn’t as drastic – in medical terms – as it appeared, but from Marta’s description it could hardly have looked worse. I arrived back at the hospital just after this event, after three days quarantine having woken up with a cold on Wednesday. Poor Marta was exhausted as well as shaken.

The night was terrible. I don’t think I slept for more than 20 minutes at a stretch without Isita needing to spit, or turning her head away from the oxygen mask causing a machine to bleep, or some other disturbance. Spare a thought for Marta who has just done three such nights in a row.

While we are frazzled, the doctors, who were fairly concerned on Friday, are now much happier. Paula, who examined Isita this morning, described her condition as “stable”. Clinically, she is looking better and some of the key indicators are heading in the right direction. The excruciating dark-green, gut-melting phase of the mucositis seems to be fading. There is much less diarrhoea, vomiting and spitting; and less pain, although we are all trying to persuade the pain team not to reduce the level of pain relief too quickly.

She still has frequent temperatures, but lately not above 38.5C. The adenovirus count is miniscule. This means the antibiotics, anti-fungals and the brincidofovir anti-viral drug are doing their jobs.

There is one major set of side-effects still causing discomfort for Isita and worry for the rest of us. This is a combination of fluid retention in her belly, which is now swollen and tender, and the probable (and expected) onset of veno-occlusive disease of the liver (VOD). This is when the blood vessels in the liver get blocked. 

They are giving Isita a drug which deals with this. Without going into the fine details, all these things require a lot of ongoing management. As soon as one bag or syringe of intravenous fluids or drugs comes down another goes up in its place. The pumps never stop beeping, vital signs are monitored constantly.

The best news is that Isita’s blood counts have started to increase slightly, which means that some new bone marrow must be functioning. It is still too early to say that the transplant has succeeded. They need a slightly higher count over a few more days to be confident. It is great sign, even so.

Since hearing this, we’ve been telling ourselves not to jump to conclusions and build up false hope. Despite that I have been on the verge of tears all day at the prospect of getting Isita through this. She slept soundly on my lap for two hours this afternoon and I was in a daze of happiness.

Ticking off the days

We are about half way through and ticking off the days – five big green sad faces on each square of the calendar since we started off. The doctors and the nurses are intently focused on Isita’s condition, and we can tell they have the situation under control. The incessant tests, monitoring show that her condition is no worse than they would expect it to be. 

Of course, we are fretting all the time. When Marta called from the hospital this morning, a catch in her voice made me momentarily despair at the prospect of some dreadful news until I realised she was just out of breath from climbing the stairs. In some ways, it is easier to be in the room and reassured that things are going according to plan, than at home or at work worrying about it.

I arrived this afternoon to find Isita sleeping peacefully with her hands behind her head and her body relaxed and straight rather than curled or hunched on the bed as before. She has also lost the permanent tension of pain in her face. This is a great relief, as since Sunday night her temperature has been spiking regularly.

Because she has also had severe pain on the left side of her stomach we began to fear an infection in her bowel which would have been a major challenge due to her lack of any immune system. A radiologist came and did an x-ray in the room yesterday and an ultra-sound this morning. The first analysis of the images suggests there is no obvious problem. They are giving her the necessary antibiotics anyway and have increased both the morphine and the ketamine. Also, the nurses are cleverly using her gastro-nasal tube in reverse to drain her stomach of bile and mucous so it doesn’t have to come out in other ways.

She is sleeping a lot, which is the best, but earlier in the day she was awake and admiring the fabulous multi-coloured banner inscribed and decorated by three generations of the Lindsay family. Thank you so much to everyone for your cheering messages of support and prayers. We need them.

Another ten days 

Exactly as predicted, perhaps a day early, Isita has entered a trial of misery which will probably last another ten days. She is hardly speaking, indicates her wants with weak gestures, curls on her bed. The most recent word she spoke to me was yesterday when we asked her what number her pain was. ‘Ten’ she whispered. Earlier today, while puking up,  she asked Marta if she was going to die. 

Marta told this to Giuseppe when he came in on the ward round. Sensibly, he said she needed more morphine. The pain team – specialists trained in the matter – have set up a pain pump, which is a highly controlled syringe drive for administering morphine. 

Alongside reassuring her fears and tending to her most basic needs, our main job is to spot the first sign of discomfort and to ask for the dial to be turned up a notch. We are steadily, but rapidly turning that dial. There is further to go. 

At least, when she has enough pain relief she is calm. Dreadful as this all is, it is all expected, and necessary, and will pass. Let it not take a day longer than it has to.

GOSH cares

They started transplanting Isita’s stem cells back into her yesterday afternoon. The process was simple but left no room for error. Once the bag of cells was defrosted, a pair of nurses had 20-minutes to get them into Isita’s body, which they did. Organisation and precision are vital to getting this right as there is no second chance. The substance used for preserving the cells in the freezing process smelt strongly of sweetcorn. Soon it was as if someone was cooking chowder right there in our little room. It is fairly toxic. Marta and I have been told to drink lots of water and to wash our hair the evening after we have left the hospital. Isita is being given fluids to wash out the toxicity, but still felt quite sick during the procedure, which will be repeated today.

We won’t know for about a fortnight – so maybe Wednesday 2 August – whether the cells have engrafted successfully. I have wondered why they can put the cells back into her body while the worst ravages of the chemo are still ahead. Why doesn’t the chemo kill the transplanted stem cells too? The answer is that the drugs are no longer free in her body. They have been taken up by the cells and are now doing their work. The new cells will not be affected as they start to regrow her marrow and white blood cells.
Along with keeping Isita free of infection, achieving a successful engraftment is a big part of getting through this treatment. But for the next fortnight we will do more than play a waiting game. We will be keeping Isita happy, motivated and strong. This is a good job for a parent; Marta and I are more than up for it. We desperately miss all the ‘aunties’ and ‘uncles’ whose company and love lifted Isita’s spirits (and ours) over the past few months, but the isolation policy is more and more necessary every day from now on.

Aside from our family and friends, it is humbling to enumerate the extraordinary resources, goodwill and generosity which are on hand to help us at GOSH. At the simplest level, every day Ruby comes in and scrupulously cleans Isita’s room from wall to wall. Each room has its own mop. She is always asking ‘how’s my princess?’ We appreciate her efforts and her cheerfulness equally. Her work, as much as that of Vicky the nurse practitioner and Mariam the ward sister who oversaw the transplant, is a mark of the attention to detail which is crucial to getting this treatment right. 

They are all part of a great crew of cleaners, housekeepers, volunteers, play specialists, psychologists, student nurses, healthcare assistants, staff nurses, nurse practitioners, specialist nurses, ward sisters, dieticians, microbiologists, radiologists, anaesthetists, surgeons, registrars and consultants not just in the oncology team and wards, but the renal team and the gastro team whom we rely on for their dedication, diligence, judgement and care. As I run through the list, there are about 80 members of staff at GOSH who have played a role, more than half of whom we see extremely regularly.

These days – not just because of what we are going through but also because of what is being reported about other cases – it seems particularly important to state that whether you look at the individuals, the teams, or the whole institution, GOSH is a supremely caring place. It is awe-inspiring how many people spend their working days and nights caring for our daughter and all the other children, and how well they do it.

Lolly therapy

Today Isita recieved her final high dose of chemotherapy. There is no more chemo scheduled in the protocol. Her stem cells will be transplanted back into her on Tuesday and the effect of the drugs will be strongest in her body towards the end of next week. It will take at least four weeks for her to recover.

The doctors are pleased – even surprised –at her progress. She has a tummy bug, but not one that can get into her blood. So nothing to worry about. Apart from that, she is in a better mood and no worse shape than when we started five days ago. This may be because we have all got used to the new regime and have worked out a pattern. Marta and I are more relaxed than we were, and that helps.

Of course, she still has an occasional sulk, like this morning when I took the plastic salt cellar from her new toy kitchen and sprinkled imaginary salt on a collection of plastic vegetables. How was I to know they were pretend cupcakes for Lola the fairy? I ruined them and everything had to go in the (pretend) bin. It’s no use saying it’s only make-believe, she was genuinely angry for five minutes.

Now that about a month has passed since anything but water passed Isita’s lips, most of her play, iPad games and YouTube watching revolves around ice cream, pizza, and any kind of cooking. She has compiled a detailed list of what she is going to eat once she is allowed. It is certain, however, that we won’t even try to wean her off the intravenous nutrition and back on to actual food until the four week recovery period is over. It is not much of a consolation that in a week she may feel too sick to want to eat. This is as hard as anything else she is going through.

Today has been a small exception to the no eating rule. The final dose of chemo has been a tiny amount of a very powerful drug. They gave it over just 15 minutes this morning. It can cause painful sores in the throat and stomach. One way to mitigate or prevent this is ‘cryotherapy’ – or eating ice lollies as it is otherwise known. We made them last night amidst great excitement. They are incredibly diluted, but maybe not to her tastebuds. Ice lolly therapy!

High dose

The high-dose chemotherapy started yesterday afternoon. It is early days so in some ways, nothing has changed. We are in the same room. Isita is still well. It will get tougher from about this time next week.

We have tried not to convey our worries or concerns to Isita. She knows she is getting new medicine, but not much more at this stage. I expect she has picked up the change in rhythm though. Marta and I are looking after her more. We are back to the nights of the beeping machines. She gets the new chemo drug for two hours every six hours followed by multiple blood tests. It is hard work for the nurses.

All these external factors may be making a difference, or perhaps the chemo is making her feel less good. She is a bit tired and sometimes fretful. Maybe I am as well. We had an argument today over iPad apps. That doesn’t happen very often.

None of us are looking forwards much to the next few weeks, with the possible exception of Jamie who is just about to go to Mallorca, the lucky devil. We’ll miss him, although he’ll have a superb time with his friend Harry.

The great thing is that we are all trying our best. Before I left Isita with Marta in the hospital just now she gave me the biggest hug and nuzzled the top of her head – now covered in in a fuzz of new hair – under my chin like a dog. We are doing alright.

The next stage

It has been an intense week of discussions, tests, and waiting for results at the hospital. This afternoon the specialists confirmed that Isita’s tumour has remained inactive during the two and a half months since she last had chemotherapy. The bone marrow aspirates and trephines were clear, and so was the MIBG (radioactive dye) scan, which Isita had yesterday. There has been no return of the metastatic disease which the earlier course of chemo eradicated. This is the best news possible. It means the original chemo was effective and that the neuroblastoma may be less aggressive than they first thought.

Last week, against the odds, they collected enough of her stem cells to make an eventual auto-stem cell transplant possible. Taken together these two things mean that Isita can now go on to the high dose chemotherapy part of the treatment. This is greatly encouraging as completing every stage of the protocol will give Isita the best chance of clearing the cancer and staying free of it. But while we are happy to be going ahead and optimistic about the outcome, it is going to be a hard and even unpleasant course of treatment. We are bracing ourselves to help Isita endure and survive it.

The drugs will be administered over six days starting – in doctor jargon – on Day Minus Seven: probably Tuesday 11 July. Isita may not feel that sick to start with. The toxicity builds up in her body day by day. Her stem cells will be transplanted back into her on Day Zero, so Tuesday 18 July. We have been told that the worst part of the treatment during which she will feel utterly dreadful will kick in on about Day Four and last for about ten days after that. This is the key period when the replaced cells have to engraft themselves back into her. We will know whether this has been successful at the end of July or early in the first week of August. Assuming everything goes well, she should be fully recovered two or three weeks later.

During the worst period, Isita is likely to feel extremely sick, and may also be in pain. She will be on a morphine drip. There is also a possibility of more serious side effects including an unpleasant liver complication. The most serious dangers will be bacterial, fungal or viral infections while she has no immunity. Any of these could be fatal. We will be doing everything we can to keep them at bay. According to the global statistics, there is a one in 20 chance that the treatment will kill her – that is the number on the consent form I signed a few days ago. 

Isita has shown herself to be sensitive to the chemotherapy drugs, so it seems likely that they will make her feel pretty bad. But as our consultant Giuseppe told me this morning “she is very good at bouncing back”. The nurses on Elephant Ward never tire of telling us what extraordinary spirit and life they see in Isita. We have all seen an intrinsic force within her which fills us with both pride and hope. At this stage, her determination, combined with the care and expertise of GOSH and the support and prayers of her family and friends are much, much more important than numbers.

Marta and I expect that we ourselves will have to be with her for much of this time – assuming we are free of infections. We don’t really know how the regime is going to work until we get into it, and we will definitely call for help if we think we need it. With Jamie away on holiday for much of the period, it may be that we need company during the evenings when we are not at Isita’s bedside. Or maybe we’ll just need sleep. We’ll let you know.

The stair is there

The stem cell harvest finished on Friday afternoon just before Isita’s party. Marta and I had steadily fortified and prepared ourselves for the likelihood that we would not gather enough, and the harvest would have to be repeated after a further dose of chemotherapy. We consciously readied our minds not to get to the top of the stairs and once again to tread into empty space.

As we were settling back down in Isita’s room on the ward after the party, the specialist nurse Aylish poked her head round the door to tell us that in total they had gathered about 3.5m cells. This was less than ideal but much more than expected.

This means we don’t have to repeat the harvest. Isita needs no more injections. (You can imagine how happy that news made her.)  Most importantly of all, we have overcome the hurdle that has prevented the treatment from going forward for nearly two months.

While this is a wonderful achievement, we must still be cautious in our hopes. The results of the bone marrow aspirates and trephines they did two days ago, and the MIBG radioactive dye test planned for next week, must show that no metastases have reappeared. Only then can we go on with high dose chemotherapy. 

All being well we will start on Monday 10 July. In the meantime we are anxiously watching for signs that the cancer has started to spread again. If so, we can deal with it. For now, we are celebrating Isita’s indomitable bravery in getting through the past week so well.