Long haul

We are at a difficult and exhausting period in Isita’s treatment. Last week, we had the sense that we had turned the corner, but now it seems that was just a bend in the road. While there is no doubt that she is much better than she was in the worst period, she has not recovered as much as anyone had hoped.

So far, the reason is not clear. Part of it may be that she is highly susceptible to the chemotherapy. The drugs she has been given were massively toxic: it is called high-dose chemotherapy for a good reason. In a counter-intuitive way, this may not be all bad on the principle of ‘if it is hurting her this much, think how much it is hurting the tumour’. But while the justification for this torment has always been that it will eventually save her life, by now she has surely obtained any benefit that the chemo is likely to deliver.

Isita mood is flat. We coax a rare word and even rarer smile from her. The fire still burns within. She suffers discomfort a lot of the time and severe pain sometimes, which frequent changes to her pain-relief regime only relieve temporarily. She has also been running a consistent low-level fever, and her gut and bowels are extremely sick – with all that goes along with that. She has to go to the commode very frequently and moving hurts her. She cannot even swallow water, but spits up sticky mucous all the time and the nurses continue to syringe large quantities of dark green bile from her stomach. 

The hope was that as her transplanted stem cells engrafted and turned into new bone marrow, her body would start to repair itself. But instead of that virtuous circle of recovery, we are in a vicious circle in which some infection, inflammation or complaint is suppressing the recovery of her marrow. Her neutrophil count has plateaued at a range between 0.35-0.5, when we had hoped it would get above one. Until the transplant is complete, she cannot herself combat whatever is holding her back.

Since Sunday evening, Isita has started to produce quite a lot of blood, meaning her gut is bleeding. This has triggered a change in approach. We have seen the might of GOSH move into action. Yesterday wasn’t much fun because a new cannula was put into her wrist as there was not enough capacity on her double chest line for all the drugs, nutrition and blood transfusions they want to give her. She then had to put up with another drip being put into the muscle of her thigh. 

She has a remarkable number of tubes attached to her, and a corresponding forest of pumps whose bleeping bleeps disturb those parts of the night when she isn’t getting out of bed for another wee. Today she is going down to theatre for a bone marrow aspirate under general anaesthetic. The gastro team paid a visit a few hours ago to explain that they have decided against a colonoscopy on the grounds it won’t show them anything they don’t already know.

Paula, one of the consultants has gone to other experts in the hospital including the microbiology team and the bone marrow transplant experts downstairs. The oncology team have also re-thought her case themselves and come up with a handful of possibilities for what the problem might be. One is a fungal infection – so they have already stepped up the anti-fungal treatment to counter this. It could also be the adenovirus, which is lurking in the background at a low level. Illustrating how complex her condition is, it could also be the anti-viral drug. 

Two other possibilities are blood reactions that cause inflammation of the marrow itself. This afternoon’s BMA will demonstrate whether one of these – Macrophage Activation Syndrome – is present or not. Both are treatable but it would also necessary to find out what is causing the inflammation, which is a bit more difficult. At the same time, they are going to stop some treatments such as those for the occlusion of the liver, which looks like it is under control. They may also reduce the anti-biotics.

Rather than being dismayed by all these possibilities, Marta and I have found it reassuring to have the evident complexity of Isita’s condition addressed in this logical way. When the right treatment is identified, she will get better. It is going to be a long haul though.

7 thoughts on “Long haul

  1. Hang in there tight Team Isita!! We have had such great news these past weeks… This is a bump on the way! Prayer is on AND STRONG on our side xxxx


  2. Mucho ánimo a los dos, Marta y John, you’ve done a long way now! We think of you everyday, and pray for you constantly, don’t give up, huge hugs


  3. Thinking of you three so much, what a battle it is. We are all in Tuscany, much love and thoughts from Anne, Archie, Laura, Iona, Alice, lots of love .


  4. What a marathon! You have to become a consultant yourself. I am glad that the might of GOSH is concentrating so hard.
    All my love and thoughts and prayers. Xxhenxx


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