On Thursday, the intensive care doctors experimented with taking Isita off the ventilator. The night nurse Karine called us at seven o’clock in the morning to say the tube was coming out. We rushed over to find her awake but breathing hard.
It was lovely to hear her speak after so many days. We watched her progress anxiously. Her blood gases, which test the balance of electrolytes and carbon dioxide in her system stayed good all day. But this was due to her own effort. She was working too hard.
In the late afternoon they decided to sedate her and put her back on the ventilator before she became exhausted. There was still infection in her lower lungs preventing her from breathing normally. This felt sad, but far from the crushing shock of the first time. Also, just before, we had heard that her trephines were clear of neuroblastoma. From an oncology perspective, she is doing brilliantly.
By Friday morning, Isita was again on low levels of ventilation, and was also half awake for some of the day, giving a thumbs up or shake of the head to say what she did or didn’t want, and listening to Taylor Swift on the nurse’s iPhone. By the evening she was breathing with minimal support.
We’ll try to take her off the ventilator again sometime today (Saturday) or tomorrow. Everyone wants to make sure she is fully ready.
We’ll get there. It feels like she is being willed along by the whole hospital. So many of the nurses from Elephant have come down to see her over the past week. We have been around for so long that we meet staff who have been involved in her care in the corridors every day. They always ask about her.
The support of all of you who read this blog is so important to us as well. A few days ago we got this amazing e-mail from one of Isita’s friends from nursery school.
dear ISITA
I MIS YOU I AM GOING TO RUN THE GREATORMOND STREET RACE TODAY AND WILL DEDICATE IT TO YOU. i REALLY want to come AND VISIT YOU BUT I HAVE HAD a really bad cough for 3 weeks and MY MUMMY SAID i CANT COME TILL I AM BETTER. i HOPE TO COME NEXT WEEK. hOW ARE YOU? Lots and lots of LOOOOOOOOOVE LEO
As his mother told us, at the start line he said “this is for Isita!” He raised £1,744. Amazing. Thank you, Leo.
Isita 
Softly, softly you are getting there. Willing you all forward.
Lol🙏❤️🐓xx
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YEAHHHH!!!! I feel like punching the air.
And what good news re the neuroblastoma. It got bored: it went. Isita won.
And what a sweet letter from Leo.
❤️❤️❤️😘😘😘 to you all Virginia
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Beautiful family, holding you in love xx
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Following avidly; thinking and wishing the best alll the time.
Love from
Michael Pryor
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Dear little great Isita, we don’t really know each other but your dad’s blog is the one daily read i do not want to miss! I was told about you by a colleague of your mum (my husband works at Sorheby’s,too) and you have become so dear to my heart! I keep praying for you and your parents and doctors every day and have asked a group of mums who meet every Monday to pray for their children and all children in need to pray for you. I have also asked a prayer group dedicated to a great Italian saint called Padre Pio to pray for you. And next Tuesday I am going to Medjugorje, in Bosnia, with two of my children and i will bring you with us. Our Lady keeps appearing to some visionaries there, and i will ask Her for your complete healing.
Confide in Her love for us and in the tenderness of Jesus. Im sending lots of love and I so hope one day to meet you: you are my greatest hero! aldina
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Yes, buenísimas noticias, y da mucha alegría saber que estáis rodeados de gente buena !! Aquí seguimos ! Un abrazo a todos y gracias por compartir John !! Incluid en el abrazo a Leo y el staff del hospital please ..
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We are all behind you John. Hoping every day for progress. Isita is so amazing! Love to all
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Isita is always on our minds, and you are all in our thoughts and prayers. Isita has the most indomitable spirit – she is one of the bravest people we know and we have such admiration for her. Sending so much love to you all. Elliott, Jeanne & family
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Love your strong, beautiful and brave family and keep praying for Isita. Simon and Natasha xxx
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Really Isita has such a force that wins always. Es maravilloso y un ejemplo para todos el esfuerzo de Isita y el de vosotros dos. Los tres vais en una máquina que solo puede ganar. Me alegro mucho que John vaya contándolo todo.
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