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.

11 thoughts on “The next stage

  1. With Isita’s spirit,the knowledge of GOSH, the prayers and support of your friends, we have to be positive.
    All my love and thoughts


  2. Estáis en nuestros pensamientos y oraciones. Animo! Aqui estamos para acompañaros si lo necesitáis.


  3. Dearest Both, yesterday I was been driven to London by wonderful Mohamed, born in Baghdad. I warned him we might need him to drive you to Hatfield and back in September. And told him about Isita ( he has a daughter aged 10) his reaction was: I could never do that, I would burst into tears. Which he did. (Luckily a big box of Kleenex in his car.) He said he couldn’t get it out of his mind and would definitely pray for Isita. As you know devout muslims pray four times a day. If no mosque in the vicinity he goes into a church. He says: there is only one God. I was very touched by his reaction so thought I’d let you know that Isita’s story has touched so many people. I hope one day you will meet Mohamed and embrace and be able to say how much his prayers have helped. Thinking of you constantly. With much love, Virginia


  4. You are all so brave. The news today is so encouraging. I know that Isita will come through this last bit with flying colors. We’ll all be thinking about you and keeping our fingers crossed.


  5. All our Prayers from Spain .Our children and us keeping in have Isita and you both in our mind and un our heart every day. we will offer all our strenth and daily Prayers for you. knowing God is taking care of your girl in special…
    During her next days..All my love to Marta and you “encourage parents” .Kisses.Beatriz y Manolo


  6. My heart jumps for joy on reading your very touching stories about Isita’s wonderful and ingenious personality. There isn’t a day that passes without me thinking of you four and your extended family. I’m sending you all my love and am saying prayers for Isita’s recovery. If either of you find you are free one evening and want to be taken out for supper or be brought a picnic to the hospital or home please text me and I’ll be over like a shot. Loves of love (and countless achuchones for Isita and Jamie) x Lucia 07968 762 678.


  7. Sending so much love and so many prayers. My mom & some of her friends in America are all praying for Isita as well. Her indomitable spirit is an inspiration to so many, even people she hasn’t met. Keeping you all in our thoughts. Lots of love from the Altberger family


  8. Thais week especially Isita will be in our thoughts and prayers. Her inner strength and spirit, together with yours, will help get her through this tough time. We send you all our love, A


  9. J&M that is amazing news, well done Isita. So the next stage begins and despite the hurdle being high I am sure the wonderful love of your parents, brother, family and friends will make this easier for you. We are sending you lots of love and energy from Mallorca for Tuesday.

    As you can imagine, we think of you all constantly and Isita you are very much in our prayers.


  10. Always thinking of you, always in our minds, hearts and prayers, all our hopes on Isita’s spirit and strength


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