One year ago

One year ago, Ana Paula called me home early to bring Héloïse to hospital as she had pain in her foot. She still associates her foot pain to her long stay in hospital and the never ending treatment.

Hopefully, one year from now, the treatment will be finished, her hair will have regrown to more girl-looking size, and we will all take a deep breath. Then one day she will know that it was not just foot pain.

Disneyland Paris

Héloïse (2)

Thanks to the Lions Sport Action and their partner Disneyland Paris, we went to this wonderful park beginning of this month. The children and parents had so much fun!!! There are some pictures of Héloïse and Ana Paula in the slide show on the Lions page, in particular on the last slide.

This has been an unexpected and wonderful escape to our every-day routine of the last months, so thanks to all those who made this happen, especially Mr Guy Matelot.

Out of hospital

It’s been more than a week that Héloïse had her septic shock, and she just went out today of the hospital. Her dream of swimming in the sea is not at reach yet as she is still to have her stitches removed where the catheter used to be 🙁

I feel a bit sad for her, but it’s so good to have her home again, and without catheter at last!

Recovering from a bad infection

So Tuesday was going to be the day Héloïse would free herself from her catheter. And indeed it has been. But after a black Monday when she started vomiting, got up to 40°C of temperature and down to 8/3 of blood pressure!

Very bad infection indeed that will keep her in hospital for a week to fully treat it, when she was dreaming of swimming in the sea with her big brother. Despite all that courage that amazes us every day, she got very sad, and I almost cried myself while hugging and kissing her.

But yesterday she was better and at night we played a lot. We slept late, hand in hand, and the prospect of getting out of intensive care today to go back to her quarters in Hôpital L’Archet makes her day. At least we saw her little body react quickly which shows that her cells are in order.

Thankfully my parents had come to give a hand with the expected busy routine. They ended up looking after the two boys, food and more. Strange birthday for my father!

Losing hair

Phase 4 is ending and things are going well, but as predicted by the doctors, Héloïse is eventually losing her hair. Ana Paula cut it so it would be less dramatic.

Héloïse kindly accepted that I post this photo from last Monday. Today I could see her skull and I think she will be bald within a few days.

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If you think she looks fatter than usual, then yes she does. This is because of the medicines. She shall look slimmer when phase 5 ends!

Phase 4 going well

Not having much to report in Héloïse’s case is a good thing: it means things are going smoothly. Indeed, she starting her fourth phase out of five, and though she developed an allergy for her chemotherapy, there is an alternative that she supports better.

Now we need to make sure that the corticosteroids don’t make her over-eat too much… She just can’t stop eating, and only a small type of aliments, usually pasta 🙁 We can’t complain after we got so worried that she was losing weight during phase 3…