Isita ringing the bell on Elephant ward

This was a big day, and one Isita has been looking forward to for a very long time. Ringing the end of treatment bell has made it real for her.

We made a family creation to thank the doctors and nurses on Elephant, Giraffe, Lion and all the staff throughout Great Ormond Street Hospital who contributed to Isita’s treatment. It is impossible to say exactly how many people’s skill and care have brought Isita to this point. There are 90 names in the picture. There should be hundreds and hundreds more if you count the scientists, drug developers, pharmacists, specialists of all kinds, surgical staff – and many other people whose names we will never know. However many they are, we bless and thank them all.

All clear

We have just met with Isita’s consultant Giuseppe who gave us the news that all of her end of treatment tests came back perfectly clear. It is now official. After two years and two months longer than any other patient – the treatment is not only over, it has worked. This is the confirmation we have been hoping and praying for. We cannot believe our good fortune.

As you know, the front line treatment finished in mid-January and the outlook was good. Even so, we have been holding part of ourselves in reserve. Every test has the potential to bring bad news. Every parent in this situation suffers from what a friend whom we met on the ward calls ‘scanxiety’.

The trouble is, neuroblastoma is a dreadful and unpredictable disease. We know of other children similar to Isita who have had to move into new phases of treatment, even having got as far as we have. So we don’t take our joy and good fortune for granted. We pray that eventually they will also get through this too.

End of treatment

Yesterday evening, Isita, Jamie, Marta and I went for a pizza at the Westfield shopping centre, at Isita’s special request, to celebrate – yes – the end of her treatment. Yes! The. End. Of. Her. Treatment. The end of her treatment! Yes, yes, yes! Two years and ten days after the kind doctors at St Mary’s Paddington invited us to sit down in the little room and ensured a box of tissues was on hand and explained that Isita had a neuroblastoma and what it was, the cancer treatment is finished. Finished, finished, finished, finished, finished. Isita received her final dose of radiotherapy yesterday morning. Providing there is no relapse, no more treatment is planned or necessary.

The radiotherapy was extraordinary to see. 14 times, Isita lay completely alone, still as a statue on a hi-tech bed as this vast machine revolved around her like an outsized robotic hand. We and the nurses had to watch her on a screen. Although the experience seemed quite forbidding, she gave every appearance of actually enjoying it – the challenge, the drama, the attention. Lordy, what on earth is she going to do when she grows up?

She still has to go through the end of treatment tests, and for the next few years there will be tests every three months. Pray God it doesn’t come back. We honestly believe it will not, but have to hold back a little bit of something in reserve so that if it does we can deal with it. We also have to get her eating properly and off the TPN intravenous fluids (target – second week in February). We have to get her lines out (target – Easter beach holiday when she will be allowed in the water). We have to deal with what may be long term damage to her kidneys (she still loses a lot of vital salts which means we have to give her supplements). But putting all that aside, our family has reached a point that for a long time Marta and I feared might be beyond us. We couldn’t have done it without the support of our friends. Thank you.

Happy Christmas everyone

We have made it down to my mother and twin brother’s in Surrey. Just to keep it interesting, Isita had a temperature after we arrived on Saturday evening. It approached the level at which we would have had to take her straight back to St Mary’s for intravenous antibiotics. The medical protocol insists on this in case it is an infection in her central line that would rapidly lead to sepsis. 

We spent a nervous and watchful night and by the time I checked in the early hours of Sunday morning her temperature had fallen. It was most probably a reaction to the flu jab. So here we are all together for Christmas, relaxed and happy, and a bit over-excited.
I am writing this in bed on Christmas morning and amazingly, Isita and Jamie haven’t burst in and woken us up yet. Heaven knows what is going on in their bedroom.
Even more exciting is that I don’t have to go and check. On Christmas Eve Isita went to bed without the TPN intravenous fluids, so there is no line to disconnect this morning. That is a Christmas present in itself! We are weaning her off the paraenteral nutrition. With any luck she will have a good appetite for turkey and all the trimmings today. The target is to have stopped them entirely by mid-January. 
This is also about when she will finish the three weeks of radiotherapy that starts the day after Boxing Day.  After a few more tests they will be able to take her line out and then, providing she stays healthy, that’s the very end of treatment. Thank God.
With this hope in our hearts we wish all our friends and those who have supported Isita and us so much over the past two years a very happy Christmas and New Year.

Amazing lab results

Isita came home from GOSH on Wednesday night but her recovery is far from over. She is still in a bit of pain and is a bit wobbly. She has lost some weight and although she is hungry, she can’t eat properly yet. All the chicken broth she drank on Thursday evening came out again before she went to bed and again this morning, so Marta had to take her to St Mary’s Paddington. Luckily they did not find any fundamental problem (for instance a blockage in her bowels). They think she has a stomach bug. The answer is to take things slow and easy. Regular sips of water or diluted juice and then some light food when she is ready. 

While we are concerned about this – and the immediate concern always trumps every other feeling – we also have good cause to be as happy as possible. As soon as Isita is right, we have some remarkable news to celebrate with her. On Thursday midday Isita’s consultant Giuseppe gave Marta the results of the laboratory analysis of the tumour. Most of it was dead, he said. The small part that was still alive had differentiated. This is the term used to describe cancer cells that have converted back into something more like regular cells as a result of the treatment. In other words, even before the surgery took place and while the tumour was still in place Isita was free of cancer. She had a lump but not a cancerous one. There could hardly have been a better result. We still have to complete the treatment. So radiotherapy will start in the next week or so and go on until early in the new year. Then there will then be a series of end of treatment tests and further tests every three months to make sure the cancer has not returned. But for now, and possibly for some time already it has been entirely absent. This is a truly marvellous thing to know.


Recovery well underway

It is not impossible that Isita will come home at the end of the week. The first few days after the operation were rocky, as we had been warned they would be. But the most dangerous potential complications have been overcome.

To start with, the doctors had to work hard to get her fluid balance right. Her system was in shock and so retaining fluid, her bowels were not functioning, she was lying quite flat, and because she was in pain her breathing was shallow. All these things were expected but caused her to collect some fluid in her lungs.

So just before the weekend, Isita was breathing with the oxygen mask, the doctors were tightly managing her fluids, and we were cajoling her to do physiotherapy exercises like blowing bubbles into a bottle. She didn’t want to, but she has grit. Having complained and turned her head away, she pulled herself together and pursed her lips together and blew.

I am sure that part of her motivation came from her memory of the last time she needed oxygen after an operation. A year ago last October she was much sicker and the crisis took her to the intensive care unit (ICU), one of the most terrible experiences of the whole treatment.

Last Friday we were visited by a pair of clinical specialists – some of the most senior nurses in the hospital – cheerful, brisk, super-efficient and kind, but also the storm petrels of the ICU. They make the call when a patient has to go downstairs to level 3. We had a nervous night, but by Saturday it was clear that Isita was not taking that journey. She has done better every day since. Now we can all breathe more easily.

The lump is out

We just brought Isita back up to the ward from recovery. She is still sleeping but has opened her eyes a few times. No bad things happened during the surgery. She still has both her kidneys and fully functioning bowels. There was minimal bleeding; so no transfusions necessary.

The surgeon took out all of the tumour she could see. The target is to resect at least 95%. In all it is an excellent result, the best we could hope for. Now there is about a week of recovery in hospital before she can go home. So many people have sent prayers and messages of support. Thank you all.

Operation back on

Isita will have her operation tomorrow (Wednesday). She and Marta are sleeping at GOSH this evening and she goes down to theatre at about 8.30 in the morning.

The surgeon and anaesthetist came to see us this afternoon and were very calm and reassuring. The surgeon explained to Isita where the cut would be, pointing to the place on her tummy. She said the stitches will be under the skin so you won’t be able to see them. She also said they would make absolutely sure she wouldn’t wake up in the middle.

These are two of Isita’s biggest fears, so it was good for her to be told. Although there were some tears, she cheered up quickly. When she thinks about it she is terrified, but she is also genuinely happy that the moment has finally come. So are we.

Marta and I then sat down with the surgeon to go through the consent form, which is always a grisly process of talking through worst case scenarios. The surgeon explained it all in a gentle but unflinching manner. The tumour is wrapped around a couple of important arteries and veins, including one to the bowels, damage to which would be life-threatening. On the plus side, her right kidney is no longer under imminent threat. In general, it is like concrete that has set around the roots of a tree. The biggest risk is they will have to leave part of the tumour behind because it is too dangerous to go on. Most of the other risks are to do with what might happen if they went on.

It could take four hours, it could take eight or more. They don’t rush. We’ll probably get a progress report soon after lunch and then we wait. Thank you for all your messages and prayers. They will carry us through.

Op postponed!

Isita is in perfect form, but the surgeon has a bad cold and fever and this isn’t the kind of procedure you can delegate. We are going home. It is disappointing, stressful and exhausting – especially for Isita who has gone through all the build up in hospital overnight, including discussions about canulas in her wrist with the anaesthetist this morning. Despite being terrified, she was up for it.

Of course it is the only choice, and the doctors were very apologetic although it is no one’s fault. They have said we’ll come back later this week or early next.

No, Lola, please don’t go!

A couple of weeks ago I was tucking Isita up in bed when she asked me an important question. “Are they going to put me asleep and take it out?” I had to tell her yes. The prospect of the surgery has been on the horizon for a long time, but the date had been confirmed just a short while beforehand. Marta and I hadn’t talked about it in front of her, but she had picked it up. I couldn’t tell an outright lie.

Marta was already in communication with the psychologists at GOSH to work out how to break the news and prepare her. So, as gently as possible, she told her what was going to happen. She is being admitted to GOSH on Monday 29 October and the operation will be the next day. She is scared about waking up in the middle and about the stitches coming undone, but is being incredibly brave about it. She has been counting down the days.

Of course, we haven’t told her everything and don’t know everything ourselves. For instance, we know the incision will be quite long and will be about two finger widths above her belly button. We know the whole operation could take up to six hours; that she will be in enough pain afterwards to warrant an epidural; and that she won’t be able to eat or drink for a few days afterwards because the trauma of the operation will temporarily shock her bowels into a kind of paralysis. 

But we don’t know whether or not they will be able to take out all of the tumour, nor whether or not they still expect Isita to lose her right kidney. Now the tumour is so much smaller it would be wonderful if that were no longer necessary. Despite all the scans, it is possible the surgeon won’t know the answer to a question like that until she sees the reality with her own eyes. We will meet her next Monday when Isita is admitted and then we’ll find out more. 

A few days after we broke the news, I was again tucking Isita up in bed when she asked me an even harder question: “what if I am not telling the truth about Lola?” Lola is Isita’s fairy. She came out of one of those wooden fairy doors that we bought for her for the Christmas before her fourth birthday and flitted about happily in her imagination all that year, but only really took on a personality, a certain authority, protectiveness and occasionally judgemental attitude when Isita went into hospital. Often, after some negative development in Isita’s day-to-day world, we have been informed courtesy of Lola, that “normally in fairyland it doesn’t happen like that”. Not that everything is perfect there. Lola and her fairy children have themselves gone through some difficult experiences which Isita is well able to identify with.

The person who has had least patience for this hard to pin down, but slightly bossy extra presence is Jamie, but now that he is wised up about Father Christmas and the Tooth Fairy, not to mention the Easter Bunny and the rest of them, he understands that Lola is our friend and ally. Even if she is not going to be around for ever, Lola has helped both Isita and the whole family deal with some very difficult stuff. 

On the assumption that Isita doesn’t remember much from before her fourth birthday she only has one year of ‘normal’ life to compare against nearly two years of medical treatment. Her experiences over these two years have made her very sophisticated in some respects, for instance in the way she communicates with adults. But in other respects they have held her back. She looks back to her four-year old self for comfort, and has missed out on some experiences we take for granted. Not long ago we realised she didn’t know how many days are in a week. There aren’t weekdays and weekends in hospital. She hadn’t picked it up. So for the past three months at home and back at school she’s been on a steep learning curve. At the same time, she is dealing with all the usual things that any six year-old girl has to deal with, such as learning that fairies are not real.

The trouble is, right now we need Lola. We don’t want her to go. So I said that although Lola wasn’t real to other people and we can’t see her or talk to her, she will nevertheless be with Isita for as long as she needs her. Sweetly, this seemed to satisfy her and she went to sleep quite happily.