Nose tube

I arrived at Elephant ward with lunch. As I said hello, Isita silently and disappointedly pointed to the white tube taped along her cheek and running into her right nostril. She hardly spoke to Marta after it was inserted last night – the silent treatment. Marta said she was very brave about the rather unpleasant process of putting it in, but it is going to take some getting used to.

She is more chatty this afternoon. Later the doctors will give her a peptide feed through the tube. This is a liquid, partly-digested high-calorie drink to keep her weight up. She is also eating normally, perhaps even trying a bit harder than before, as if to show she doesn’t really need it. Attagirl!
We are now into the hard slog. The novelty and drama has worn off. The strange innovations of cancer treatment – the visits of community nurses at home, the tubes, hospital rooms, and complications of multiple drug administration – have become routine. It is not so much that it is difficult than it is long.

We have to jolly Isita through the day, picking a tricky path between being too indulgent and too strict. She was furious that I took Jamie to Shropshire without her last weekend. It is,however, also hard for Jamie to understand why Isita gets so much attention, special treatment, presents, and iPad time compared to him. Everyone is a bit grumpy. There have been a few outbursts.

The challenge is to keep everything together while the treatment takes effect. The different drug cocktail she is having this time causes more nausea, but the anti-sickness drugs seem to be working. Her small weight loss recorded yesterday was not enough to make them reduce the dosage. We push on as best we can.

7 thoughts on “Nose tube

  1. Oh, John, you are all being so brave. It is a long hard slog and I admire the strength with which the whole family is facing this challenge. Of course there will be days that are better than others. Please tell Isita and Jamie that their American friends are thinking of them often.


  2. Dearest John and Marta,

    Rosie has helped Alec and me catch up on John’s blog. I’ve been thinking about you both so much but Alec and I didn’t know how to use the technology…. As a result I have thought about you all the more and you’ve been in my prayers and our thoughts so much. I admire your incredible guts and perserverance. What a brave little Isita, what an incredibly brave family, not forgetting Jamie!
    I hate to think of all the shocks and rapid information you’ve had to absorb over these last weeks but she is being treated by the best children’s hospital in the world and they will get her well.

    Lovely to see the photographs of you all – and great that Isita is beginning to forgive the nose tube and is chatty and with a good appetite.

    With very much love to you all and thinking of you all so much,

    Isabel and Alec


  3. Dear family, we think of you every day, we send to you all our love, and hope our prayers keep you strong to endure the pain and inconvenience of this long treatment, a very hard situation for both kids, but you’re the bravest parents ever!


  4. I just found out about this blog.
    Isita!! I really enjoyed spending a part of Christmas with you, at Tia Fernanda’s countryside. You are a great girl with such an imagination. I´m sure you will get over this situation, because you are a really strong girl, and you have with you the best parents you could have, and also de best family!!
    Its algo very inspiring how Marta and John are facing this situation, and you both are an example for all of us.
    All love and strong from Ybarra Navarrete family.


  5. Marta, I cannot stop thinking of you since this morning and our conversation, and of course of Jamie, John and trooper Isita. You are in my prayers and I hope you are going to move to St Mary’s smoothly and settle for a bit of normality after that. It would so great to have Isita radiant smile back at the square even for a few hours per week. Gustave and the rest of the family is sending you our love and support.


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