Up and down 

Isita is full of life and happiness. She has taken to frequently hugging her nurses. Her high spirits have been greatly helped by the visits of so many friends from school and elsewhere, even over the bank holiday. Those who have come along to her little domain on Elephant Ward include Elspeth, Isla, Rebecca, Lily Rose, Lola, Ginny and Hannah. John and Benedict also came with Violet and Alex. As it is absolutely certain that Isita will not leave hospital for at least two months, it is brilliant that the world can come to see her from time to time.

Meanwhile, it has been an up and down week of worry and frustration on the medical side of things. Alongside the great bugbear of the tumour, we are still struggling against its sidekick the pesky adenovirus which stubbornly refuses to quit her system. It is blocking the road to the next – and most crucial – stage of treatment. 

The idea was after the bank holiday, if the virus load had fallen, we would go ahead with the stem cell harvest. Or if not, they would administer a new anti-viral drug, or start her on retinoid therapy which increases the chance that the tumour will remain dormant, or both. But one of the conditions for these plan B treatments was that Isita should not have diarrhoea. She didn’t on Thursday and Friday but by Saturday it had returned. This morning we discovered the viral load had increased from 1,600 copies/ml of blood to 5,000 copies/ml. It felt like stepping back or going round in circles.

Marta and I are worried because the longer we delay the start of high-dose chemo the higher the chances are of a relapse, undoing the achievements Isita has made with the induction chemotherapy to date. On Monday morning, she complained of a pain in her hips, something which has not troubled her since the chemotherapy started. It could have been caused by anything and has not returned. By the same evening she was running down the street outside the hospital in her blue tutu and doing gymnastics on the playmat in her room, so it was probably a false alarm. But anyway we are on tenterhooks.

The doctors are looking at everything, and testing everything. All the expertise of GOSH is being brought to bear: microbiologists, gastroenterologists and so on. One of the treatments under consideration is a lymphocyte transfusion. These are the blood cells which fight viruses. From what I understand they would have to take lymphocytes and ‘train’ them in the lab to develop the right adenovirus anti-bodies. Apparently, this technique hasn’t been used before against this type of virus so there is some uncertainty about it. But we are glad they are thinking about it. The doctors say that if Isita can get over the virus then everything else is going to be much easier as most of the negative side-effects she has suffered have been exacerbated by it.

The most encouraging words we have heard in recent days came from one of the nurses, who told Marta that Isita would definitely make it through the treatment because she is such a fighter. She is indeed. This evening just before bedtime, Isita called on Marta’s mobile to say she had done a “proper poo… a sausage”. I am so excited, I could almost put it in a tin like Piero Manzoni. This is what it is like right now, we are swinging from despair to hope every day.

Waiting game

Giuseppe came by and saw Marta and Isita yesterday afternoon. He explained the plan for the next stage of Isita’s treatment. Frustratingly, that plan involves more waiting. But we do, at least, know the direction. 

The most important decision is that surgery will not happen until after the high-dose chemotherapy. This is because of the risk that she will lose her right kidney as a result of the surgery. They want her to go into the high-dose chemo with both kidneys intact.

 Ideally, we would start the high dose immediately. We can’t do this because there are still traces of adenovirus in Isita’s blood so they can’t harvest her stem cells. She is no longer on anti-viral medication and despite this, the viral load tests show that the number of ‘copies’ in her blood is falling. A month and a half ago when she was most sick, there were several million per millilitre, then 100,000, a fortnight ago 10,000, last week 4,000, down to 3,000 back up to 3,500 and now 1,300. Soon we will be counting in hundreds. We are aiming for zero.

If the rate has fallen enough by next Tuesday, they will start gearing up for the stem cell harvest which takes a few days. A great indication that we are heading in the right direction is that Isita did a normal poo this morning. Sorry to be graphic, but amazingly we do mimic the crazy doctors in The Madness of King George III, peering into bedpans all the time and seeing if we can tell any difference. We have become students of the Bristol Scale.

 If the viral load has not fallen enough, Giuseppe has improvised a replacement therapy intended to maintain the benefits which the treatment has achieved to date, without creating additional side-effects which will set us back in other ways. He would start Isita on retinoid therapy. This is also known as differentiation therapy. It works by helping cancer cells mature into normal functional cells. 

Normally, it would be prescribed much later in the treatment and whatever happens Isita will go back to it later on. It is basically just a stop-gap to ensure that some treatment is going on as we get further away from the last date when chemotherapy was administered. The best thing for Isita will be if we can drive out the last traces of the virus as quickly as possible and get going with the stem cell harvest and high-dose chemotherapy.

Cherry Bomb!

Isita had a fabulous day today with a wonderful stream of visitors starting with Tante Joosje, then an artist who came to do some lino printing, a mobile library, then Dorothy and Chantal, whose electronic devices she ruthlessly commandeered.

She was free from all her tubes all afternoon so I took her down to the Lagoon café and then we wandered down Lambs Conduit Street in the afternoon sun in her pyjamas and bunny rabbit slippers. 

Back in the room she conked out after only a couple of chapters of the book I am reading her. Called Good Night Stories for Rebel Girls, it is an occasionally inaccurate but nevertheless engaging collection of vignettes of women and girls who have taken their own path in life. 

Some of them have made a big impression on her. She liked the story of Joan Jett because people told her band the Runaways they were too young.

 “So what” the band shouted.  And too loud: “they just played louder”. 

 Now as soon as she can get hold of my mobile, Isita opens the Subway Surfer app and plays it to a sound track of the Runaway’s 1978 punk rock classic ‘Cherry Bomb’. Of course she has learned the words:

Hello Daddy, 

Hello Mom,

I’m your ch-ch-ch-ch-ch-cherry bomb.

Hello world,

I’m your wild girl.

I’m your ch-ch-ch-ch-ch-cherry bomb.

Smaller but harder

Some better and some worse news today. Kate, the consultant surgeon, came this afternoon to tell us what she had seen in the CT scan they did last week. The better is that the tumour is very much smaller than it was. The worse is that from its base on the adrenal gland it is surrounding a junction of major blood vessels, meaning that in surgery Isita’s right kidney would be at severe risk. Other veins and arteries are also involved. 

The surgeon said it was as if the tumour were concrete poured around the roots of a tree. Her job is to free the roots without damaging them. She will pick away with a scalpel, even removing the outer surface of the blood vessels if necessary. But she will leave cancer tissue rather than do irrevocable harm.

Her concrete simile is apt also because the chemotherapy has calcified parts of the tumour. Is this good or bad? It makes the surgery much harder, but the calcified tissue may be dead. Dead tumour may be less necessary to remove. Can they tell what’s living and what’s dead? How much can be reasonably left? Would high-dose chemo kill a lot more of it? To fully understand what all this means we have to wait until the specialists have their weekly meeting on Thursday. 

What we know now is that the main negatives are the threat to the kidney and the probability that the surgeon will not be able to remove everything. We already knew it is never possible to remove the entire tumour, which is one reason the treatment is so long and hard and surgery its least important element. 

We were also warned at the beginning about the danger to the kidney. One possibility is that they will try to do the high-dose chemotherapy first, which is easier to recover from with two kidneys. This would calcify (kill?) more of the tumour making surgery harder still. But it would then be easier to sacrifice the right kidney.

I can’t deny that after the optimism of the other recent test results, we have been dunted by this news. But if there is one thing we have learned over the past months it is not to jump to conclusions. Despite all the science and precision, we are reliant on the judgement of the magnificent group of expert doctors who are looking after Isita. 

What ever happens the next couple of months will be testing. At these moments we have to draw on our own reserves of emotional strength, courage and faith and Isita’s too. And you would not believe how bright and strong Isita is right now..

Go for it, my darling!

Giueseppe came in to see Isita and Marta yesterday afternoon. The trephines are clear. It feels that our prayers (and all of yours – thank you) have been answered. This is the best news and means that the induction chemotherapy phase of Isita’s treatment has been as successful as it could be. Giuseppe told Marta that he had been expecting the clear result because she had reacted so severely to the toxicity of the drugs. This seems to be an area of cancer treatment which is still not perfectly understood. A month ago, when we were discussing how sick Isita was, he mentioned that the link between the side-effects and the efficacy of the treatment was still a matter of debate. But the cancer comes from Isita’s body and has her genes. So it makes sense.

The fact that Isita has reacted so severely to the chemo drugs is the main limiting factor on what happens next. She still has traces of the adenovirus in her blood and gut meaning that we can’t do the stem cell harvest yet. So, we can’t move straight on to high-dose chemotherapy. However, she also can’t go into surgery until her kidneys have tightened up and the level of platelets in her blood have risen. So right now we are facing a temporary blockage.

The quandary facing the doctors is that the main anti-viral drug is bad for the kidneys, in other words the treatments are working at cross-purposes. The most likely decision is therefore to stop treating the virus for the time being and to concentrate on getting Isita fit enough to undergo surgery. As she recovers from surgery they will then switch back to dealing with the virus? If necessary. These decisions are not easy, and Giuseppe is not pretending that they are.

The main task for Marta, myself and all the wonderful ‘aunties’ who come in every day to the hospital is to continue nurturing Isita and to monitor her progress as closely as possible. The general picture is that she is very fit, lively and happy. I am sure it won’t surprise regular readers to know that she has entirely charmed all the nurses on the ward. The other day she told Helen, the ward sister, that she had to say thank you to all the nurses because they were the important people who were making her better. Helen was super-chuffed. “I’m going to tell that to my own children when I get home”, she said. Earlier Isita had persuaded three lovely nurses to dance around her room, waving their arms above their heads like fairies.

At a practical level, we are working with the nurses to count everything which goes in and everything which comes out again. She has just gone 18 hours without an episode of diarrhoea. Dare we hope her system is recovering just when we need it to? At a more technical level, they are monitoring Isita’s platelets, neutrofils, lymphocytes and electrolytes i.e. everything in her blood, and every day things are getting a little bit better. Go for it my darling!

Not good – very good 

Isita’s consultant Giuseppe just came in to her room on the Friday afternoon ‘grand’ ward round. “We got Isita’s MIBG results,” he said, with a slight pause of forgivable theatre. “They were clear”.

“Good”, I said.

“Not ‘good’”, he responded. “I would say very good.”

It appears that the tumour has shrunk and there are no ‘lesions’ anywhere in here body. This is the best possible news.

Now we need the results of the trephines they took this morning. These are samples of bone from two places in her lower back. We already know from the aspirates that they took a month ago that the marrow itself is clear, but often the cancer cells adhere to the inner wall of the bone.

If the trephines are not clear, Isita will need an extra course of regular chemotherapy. If they are clear then we have a bit of a race on our hands to get rid of the last traces of the adenovirus so Isita can start the high dose chemotherapy before 19 June, with surgery probably having to take place before that. 

There is a lot to unbundle from within that, and plenty of variables. But the simple takeaway is that there is no better news we could have heard today.

Exam week 

Isita is still in hospital,  and still on marvellous form. She has watched Pocahontas about 10 times, cooked up dozens of bowls of playdoh spagetti soup, and never stops chatting- the best indication of her wellbeing.

Yesterday someone from Project Linus came by and gave her a barn quilt embroidered with cats. We are constantly amazed by the generosity of the volunteers and donors who give so much to Isita and the other children at the hospital.

Then my godson Jem and his mother Caitlin came by, and Jamie was there too. 

Isita’s kidneys are still leaky, but there are signs that this is getting better. They are topping her up with what she needs and the levels are becoming more stable.

At the same time there are lots of tests going on. She had the MIBG scan yesterday, will have the bone marrow aspirates and trephines tomorrow morning and the MRI tomorrow afternoon. Marta and I are meeting the surgeon on Monday morning and Isita’s main consultant on Thursday. As pieces of information from the tests come available we should learn about them, and the decisions on the next stages of treatment should be taken by the end of next week.

Blue light ride

Isita is back at GOSH. She came here from St Mary’s yesterday afternoon in an ambulance with the blue light flashing, which she was thrilled about. This episode started on Tuesday evening after she had sicked up her nose tube for the second time in as many days. Our plan of postponing the torture of putting it back again was interrupted by a call requesting us to take her into St Mary’s to have her potassium levels topped up.

Like a total beginner, I moseyed in to paediatric AE late in the evening with Isita, an iPad and a couple things in a carrier bag thinking we’d be back home in a hour or so. There followed a somewhat uncomfortable night and the lengthy game of balancing the electrolytes in her blood began. The first IV infusion of potassium didn’t do the job. They gave her another one. It sort of worked, but then the bicarbonate IV knocked it down, so they had to give her more potassium. They then had to correct the magnesium and phosphate levels. And so on.

On Wednesday morning, Isita was due at GOSH for the MIGB scan. That never happened because she couldn’t leave St Mary’s with low potassium levels which can trigger cardiac problems. On Thursday they gave her even more infusions and some blood transfusions. They helped, but not enough. On Friday morning, I helped a couple of nurses to put in a new nose tube. It is complete torture. She is justified in hating it. The infusions continued.

Throughout all of this, Isita has seemed very well: no temperature; no stomach upset; not eating much, but not being sick either. But as one of the doctors on Grand Union Ward explained on Friday morning, the reason her electrolytes have not stabilised is that her kidneys are more “leaky” than they should be. This is one of the side-effects of both the cisplatin chemotherapy and the cidofovir anti-viral drug. It introduces another element into the game of chess which is Isita’s treatment plan. We have to get rid of the virus entirely before we can do the stem cell harvest – and happily there aren’t many symptoms of it being around. But if more treatment is necessary, cidofovir may no longer be an option.

So on Friday evening, with her potassium levels at borderline level, they put Isita and Marta in an ambulance with the blue light flashing and whisked them to GOSH as quickly as possible. The last time they took a similar ride was from home to St Mary’s five years ago when Marta went into labour. I think they both enjoyed it more this time.

The tremendously reassuring thing about GOSH is that the doctors are the grand masters of Isita’s treatment, with the experience and judgement to call the next moves correctly. They say what Isita is going through is completely usual and that Isita’s kidneys will recover after a while. A terrifying prospect has receded to become another hard step in the difficult journey to recovery. In the meantime, Isita will go through the full panoply of tests during this coming week which will give us a much better idea of what will come next.

All change

In my recent post about the likely course of Isita’s treatment over the next month did I mention that the schedule could change? Well, it just did. To save you flicking back, I’ll recap. The basic outline was that during the first week of May, Isita would get a course of injections at home, so that the doctors could do a bone marrow stem cell harvest in the second week. The main tests to see how well the chemo had worked would happen in the third week, and based on the results, further treatment following three possible scenarios would begin at the end of the month. Now we have an entirely different plan. The tests will take place during the first and second weeks of May, with the MIBG (radioactive iodine) test to check on the metastases this coming Wednesday. The stem cell harvest has been postponed for at least a fortnight, because there are still traces of the adenovirus in her blood.

When you think about it, it is obvious. If they harvest the stem cells while the virus is still present, when they re-inject the cells after the high-dose chemotherapy, they will re-infect her at a time when she has no immune system. So, they must be certain the virus has completely cleared before taking that step. She is continuing with the anti-viral medication, and may even get another drug if necessary.

Everything has changed about because according to the previous schedule, plan B was to do the high-dose chemo before the surgery if the tumour were in an awkward place. Back in January, it was indeed lying close to an important blood vessel, where the surgeons would not want to operate. Until the virus has entirely gone, plan B isn’t available and if the tumour is still alongside the blood vessel plan A isn’t available either.

No need to panic though. Plan C of introducing a further course of regular dose chemotherapy is still there whatever the case. The virus will go and the tumour may even now be operable. We need to know what the situation is. Getting the test results sooner will make it much easier to take the correct decisions without introducing great delays.

We don’t know how long it will take to get rid of the virus, but with any luck, it is already on the way out. Right now, Isita seems in very good health. She is still feeling the effects of last week’s chemotherapy, so she is nauseous and has low appetite. But she doesn’t have any fever or upset stomach. She is much healthier than she was after the previous two cycles. 

They let her out of hospital on Saturday morning. We went home, and came down to Betchworth on Sunday with a quick detour to GOSH to get a G-CSF injection in her leg. She has been in heaven playing with her cousins, and with Jamie who was there for a couple of days.

Unfortunately on the way home, this time vus St Mary’s for another dreaded leg injection, she sicked up her nose tube. So they have to put a new one in, which is horrid. She is there now with Marta.

We have lots of outpatient appointments over the next fortnight, and probably one in-patient procedure – another bone marrow aspirate under general anaesthetic. We are praying that she stays well so that we can have a good long period at home.