Day 10

Thursday, June 14, 2012

Father's Day is taken very seriously around here.  This morning, Ari made a card for Dad, we picked out a balloon to give him Sunday, and we even had a brochure of gifts delivered and were asked to select 3 to give Dad on Sunday.  I think Dad may read this post so I will wait until Sunday to share the gifts Ari chose for him. 

But on the topic of Dad, I want to share how incredible Matt has been since the moment we stepped through the hospital doors.  Here are just some of the daily tasks he has taken upon himself.  He changes almost every diaper, he makes the bed every evening, he cleans the room, and he keeps the nurses well fed and well sugared.  He fits his 6 foot 2 inch frame on a 5 foot 10 inch bed every other evening and he never complains. 

He is in the hospital every day and almost every night.  He has put everything else aside.  And he provides care for Ari like I never could have imagined.  He holds Ari in the operating room when they give him anesthesia, he invents games and distractions to keep Ari entertained, and he downloads new toddler-friendly apps daily for the Ipad.  He asks the doctors every possible question to ensure we have all the information we need, he researches the disease, and he advocates for his son.  He is strong and fierce and incredibly loving.  And he remains my best friend and support.  He is truly remarkable. 


Daily update:

It has not been a very good day.  The morning lumbar puncture went smoothly but Ari woke up cranky and tired and spent most of the day feeling sick.  He is having trouble keeping food down but is still very hungry (okay, you want gross details?  After his 2nd vomit of the day, he tried to eat the just ralphed spaghetti and meatballs.  In his defense, it did look exactly the same coming up as it did going down), his tummy hurts, and he just doesn't feel well.  He was given a large dose of medication in his spinal fluid this morning which may be contributing to his general malaise.  It is also very possible that these are all side effects of the chemo medications and that he will remain feeling like this for much of the next 20 or so days. 

The good news is - Ari loves narcotics.  He had some happy juice this morning pre-op and he became a wobbly silly man.  I took a video (I just couldn't help myself, but I won't post it here...that would be even too much for me) of his giggling and rolling and loss of balance.  It was the only belly laugh Matt and I had today and I'm excited to watch it over and over tonight.  And, as the docs are trying to make Ari as comfy as possible, they gave him a small dose of oxycodon this evening.  As I suspected, he thoroughly enjoyed it and it made all the pain go away.

His numbers are still looking good, the cancer cells are depleting, the mass in his chest definitely shrinking and everything else is on track, but his ANC count (google it, I don't know what it stands for) is now at 0 which makes him very susceptible to infection for a week until his body begins to create new good cells. We are asking all kids, anyone who works with kids, or anyone who has even the slightest sniffle (or lives with anyone with a sniffle) to not visit this week.  And all visits should be quite brief so Ari can rest.  (Or just ask Scott our mealtrain deliverer from probably won't want to stay long anyway.  Sorry Scott.)

And thanks for all of the emails, texts, and phone calls.  I read everything but have gotten very behind on responding.  I promise I will get back to you eventually. 

It's my night off so I'm outta here...


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