The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Saturday 1 February 2020

Chicken Soup for the Soul


Today was a good day. Ollie still slept a lot, but he had only one headache early this morning and no other real pain (only a bit of discomfort from lying in bed for 15 days and annoyance at the feeding tube still being there). He ate some soup and YOP. He's also getting up and urinating and having bowel movements without pain or stress. 

We've cut his pain medication in half and he's doing well. He had short conversations with me and was always lucid. That's a big improvement. 

He desperately wants to see, but is accepting that it may take time until we've won the war against the lymphoma in his head. I've also started talking to him about how you can live a great life even if you can't see. Although we remain hopeful, we have to start normalizing the idea that he'll be okay if his vision doesn't come back.

We started his regular round 3 of chemo with a slight change to one of the usual chemo meds since the lymphoma in his cerebrospinal fluid now requires the change. So far so good.

Tomorrow he'll get another lumbar puncture to relieve any pressure and do the inter-thecal chemo again in his spine.

Meanwhile, Abby was at school where there was a special liturgy and prayer circle for Ollie led by our priest. Several teachers and her principal sent me photos and notes to say how moving it was and that Abby had been so strong and brave in speaking at and doing a reading for it. 

Ollie' s sweet teacher told me she'd felt emotional at one point and Abby saw her and went over and gave her the biggest hug. She's a girl with incredible grace and empathy and we are so proud of her.
The prayers are working. He is getting better and stronger. He is starting to believe that he'll get better. So we all feel better and stronger and more hopeful. 

Thanks to all of you for helping to bring us through the darkness of the last two weeks. We're not totally out of the woods, but we're on the path out.

1 comment:

  1. Me emocioné mucho al oír las pequeñas victorias. Cómo tú dices, la vida transforma y nos pone a pensar en otras dimensiones del dolor, de la felicidad y de la esperanza. Me alegra mucho la noticia.

    Gracias Dawn por compartir tan profundamente tus sentimientos, emociones y pensamientos. Cada día que pasa seguiré enrolando mis energías sanadoras hacia esa luz.!!!! Besos familia y dile a Abby que admiro su valentía, hermosa. Caya Camacho

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