Good MRI result

I was still in my dressing gown and pyjamas this morning when two of the lovely oncology doctors came round to Isita’s room with the wonderful news that yesterday’s MRI showed no change in the size of the tumour since it was last measured and no signs of problems anywhere else. We still have the MIBG scan on Friday, but the greater likelihood is that this will also show no change since November. Let’s hope. After our dreadful panic from last week, this is fantastic news.

Barring any other unforeseen complications, it opens the way to starting immunology very soon. We may start the preparations on Monday. As Isita’s blood and other tests are also coming back normal, apart from the tiresome return of adenovirus and sapovirus infections, we are also expecting to have Isita sleeping at home from this coming Monday. The plan is to finish our home TPN training this week. We are getting back on track.

We are continuing with the feeding programme, which is a slog. But there are signs of progress here too. Isita hasn’t been sick for several days. We are however back on the old hospital feed and a bit nervous whether she will tolerate it as well as she tolerated the Nourish feed. We are approaching this challenge on a strictly empirical basis. i.e. we make considered changes and monitor the results and if it doesn’t work we try something different.

Over the past year we have come to appreciate there is a wide difference between clinical and empirical medicine. Over the past few weeks, Marta and I have seen Isita in better shape than she has been since last June and getting better all the time. Then the various tests suggested a different story. So while her increasing good health encourages hopes and dreams of yet better times ahead, we live with the fear that some insidious problem could be sneaking back where we cannot see it – like a thief in the night.

So the detailed attentions of the clinicians, and the light they shed is greatly reassuring. Isita looks like she is getting better – and for now the tests confirm this. The MIBG on Friday is a vital milestone yet to come, but already we are happier. Thanks to everyone for your great support and prayers, especially over the past week.

Dratted complications

Just as we were anticipating some time at home and a short breather before the next stages of treatment, two complications threaten to change the plan. The first is the unexplained appearance of imbalances in Isita’s blood. It is both too acidic and she also had too much bilirubin, i.e. jaundice, although that has come right down today. The second more disturbing complication is the possibility that one part of the primary tumour may have increased in size.

There is no connection between the two upsets. However, they noticed the possible change in the main tumour during an ultrasound checking for liver problems that could have caused the jaundice. The liver and gall bladder are fine, but incidentally the scan showed that part of the tumour may have grown. The difference is within the margin of error comparing the ultrasound and the CT image taken in November. “Apples an pears” as the senior nurse practitioner noted. We hope to get a better picture after an MRI tomorrow or the next day.

Next week they will also carry out an MIBG scan. The radioactive dye will show if the primary tumour is active. In November, there was just a small uptake indicating treated disease. Back then there were no metastases. We must hope for a similar result. Meanwhile we try to remain calm.

There is still a scenario under which we bring Isita home next Monday. Our TPN training is temporarily suspended but we can get signed off if we start again tomorrow. This will happen once the imbalances are under control. We have temporarily stopped the Nourish feed and some medications, and will only reintroduce them gradually.

What is most important is that the scans should be clear. If so, we will move ahead with the first stage of immunotherapy next week. This starts with a fortnight of retinoic acid – a supplement – before the actual therapy begins: 10 days in hospital, two weeks out, 10 in, and then three more cycles maybe as an outpatient if she can tolerate it.

If the scans show the primary tumour is active and growing, Isita will need more chemotherapy before we go on. The worst case scenario is that they find metastases. That would indicate the high dose wasn’t high enough. As our consultant Giuseppe told us this afternoon, “if this disease kills Isita, it is metastases not the primary tumour that will do it. We can deal with the primary tumour.”

So this scare over the tumour growing, even if it is justified, does not, on its own lead to the worst case. Contary to what one imagines, the primary tumour is not the engine of metastatic disease. If other lumps start growing they will come from individual cells already lodged around her body. These are best dealt with by immunotherapy, which is why this next stage is so vital.

Putting the most positive spin on a fairly grisly afternoon, what appears to have been a temporary episode of jaundice has pushed the doctors to carry out tests which would have anyway been needed very soon. If the results are good, Isita will soon be embarking on some of the most sophisticated cancer treatment there is, which we are extremely, extremely lucky to have access to. If they are not good, we have been alerted to a potential problem at an early stage.

I wish I could go to sleep and wake up next week when all this will be clear. Pray for her dear friends.

Zooming on

I meant to get up very early this morning to catch up on the work I haven’t been able to do while on TPN training. But I was struggling to wake up at 7 o’clock when Isita needed my help to get to the commode. I was thinking of opening my laptop to answer some emails, when she called out in shocked surprise “Daddy! I think I’m doing a real poo!” As we peered at it, I almost cried and so did she. I won’t go into details, apart from to say there is still room for improvement. Nevertheless, a huge advance; she has not produced anything you could call a turd at all since early July.

As is so often the case, the feeling of elation was short lived. Soon afterwards she was being sick and suffering from sharp stomach pains which made us think the end of her NJ tube might have once again become displaced. It hadn’t, as an x-ray showed this afternoon. More good news.

It feels like we are making great progress in all areas. Isita zooms down the corridors on her scooter rather than asking for the wheelchair. She is starting to swallow rather than spit out saliva into a bowl. She was not sick yesterday at all, nor three days ago – also a first in many, many months.

Marta and I are in no doubt that we owe these advances to the new Nourish feed we have imported from the US, on the recommendation of my friend Glada. This morning we told the hospital we were no longer going to give Isita the old Neocate feed.

This upset the dieticians. One came to explain how dreadfully risky it was, as none of our nurses or specialists have been trained in using Nourish, nor the new pump that we are bringing in. As we live in an Abbott area, It would be better to only use products supplied by that company, he said. Unfortunately, Isita does not have an Abbott tummy.

Meanwhile, the TPN training is going brilliantly. Yesterday, I changed Isita’s dressing myself. We expect to be looking after her at home by Monday 22 January Marta’s birthday. And about time too. Last night was her 250th consecutive night at GOSH. She can’t have spent more than a dozen or so nights at home since this all started.

One year

Exactly 12 months ago today, I took Isita into the Westbourne Grove Medical Centre with pain in her back and hips. This was her fifth visit in a month and the GP referred her immediately to paediatric A&E at St Mary’s Paddington. By that afternoon I was being taken aside by a kind radiologist to be told that she most likely had a neuroblastoma and would be going to Great Ormond Street.

Those first days in hospital seem impossibly distant. It has been a horrible year, but that doesn’t mean there haven’t been good bits, especially the spirit that Isita and Jamie have demonstrated, the amazing support that all our friends and family have given us, and the care we have all received at GOSH.

We are now working on getting Isita home. Our TPN training starts on Tuesday, so she could be discharged on about 19 January unless one of the next stages of treatment intervenes. She is very excited about it.

Our attention remains focused on Isita’s gut. This evening Jamie and I went to the UPS depot in Kentish Town to pick up some special all-natural paediatric formula. It was supposed to be delivered this morning, but the driver never knocked or called and instead falsely claimed that he hadn’t been able to collect funds for customs duty. Disgraceful. Never use that crappy company if you want something important delivered…

Anyway, we are going to slowly introduce the feed in the hope that Isita’s gut will like it better. It is actual pureéd food while what we are giving her now is glucose syrup combined with pre-digested amino acids. Yum!

Apart from the small amounts of feed through her nasal tube, Isita has not eaten for more than six months. Today the doctors said she could suck lollipops – the first proper thing she has tasted in all this time. It’s almost a shame she doesn’t have much of a sweet tooth.