Saturday morning

Well after a night of vomiting and all of the other, Ruby finally settled in around maybe 3.  She had a hard night.  This morning we were trying to medicate past the nausea.  The soon-to-be-patented strawberry apple juice made on my beloved Hurom juicer was a GO!  She drank almost half a cup!  It was so encouraging.  Ruby nibbled a cracker, she even had a spoonful of Alison’s famous chicken soup.  And then we lost ground again when it all came back up.  So now we adjust the meds again to try and regain ground on the nutrition front.  This is the most delicate battle.  It’s one thing to survive things that sound like banned pesticides: etopocide, cyclophosphamide, vincristine, and a few others that I’ve completely forgotten in the haze that is this day.  It’s entirely another to get your child to eat.  I’m thinking I’m tempted very strongly to explore other avenues.  I’ve advocated for the use of a synthetic drug called Nabilone.  It’s a synthetic cannabis that could increase her appetite and put a lid on her nausea.  They agreed to try it tomorrow morning if we still can’t get her to eat today.  One step before the tummy tubing.  We were told today she also has to have a tube in her leg to deliver white blood cell stimulation.  I’m guessing this is due to her counts getting sketchy.

Maybe we will play Chutes and Ladders later.  Games are important.  Laughter is important.  That’s all we’ve got at this point. That and every second I can look at her, touch her and make light of the heavy for her.   We play David Myles every day.  Ruby dictated an email to him thanking him for writing his songs.  He hasn’t replied but I hope he knows he’s loved by this little 7 year old.  Maybe you guys could emailbomb him and send him some love for having such wonderful music.

The wispy hairs have started to drift down to her soft pink pillow.  I know the time rapidly approaches to me doing my very best Sinead O’Conner impression.   I’m just hoping Ruby doesn’t shave my ear off haha!

Hey there’s someone down the hall (there’s 10 beds in this part of the chemo ward) with a kickass amazing voice.  I grabbed a couple of moms who I was gossiping with in the kitchen and we crowded around the door to room 10 and all sighed.  Oh to sing like THAT.  I said we should put all the kids in one room and have a mom party in the other.  We weren’t sure how not to get all the iv trees tangled up and then we speculated on the regurg factor.  You know the one, alot like dominoes.

Well that’s about all’s I got’s to report this afternoon.  I’m going to watch Meryl Streep rock out in Mama Mia while Ruby dozes.  That or I’ll read some of my Michelle West collection, good distraction, musical sci-fi/fantasy writer.  I’ve given up on knitting.  I leave that to the professionals.  I keep sitting on the needles and dropping stitches in the dark (Ruby is somewhat photosensitive through the treatments).

Hey for those of you who feel so inclined, can someone go and take some photos of Precious and maybe a video, the one we had didn’t work so she’s missing her kitty alot.

Thank you and well, till the next time I can update.

Hugs (with masks and gloves on)

Hey I wanted to share with you some of the links I find as I go.  I could link you to the medical stuff but I think you can googlesearch your head off on pineoblastoma on your own.  I’m looking for human connections.

Here’s one

Her journey is very close to ours.   I connected with her on email and her posts on the subject are informative and well written.

Thanks all


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