Fries are done

Monday, September 25, 2006

Home again, home again.

Well, we finally got sprung from the pokey!....

Dante woke up this morning all smiles, as if he knew we were going home. Granted, I told him last night as we were going to bed that if we could stay healthy today, we could go home.

At 8:15 I heard him whispering to himself and giggling as I opened my eyes and peeked at him through the side rails from my "bed". He was ready to go. He did really well overnight too. Slept well, no real
complaints during diaper changes, very little tossing. I think from now on we will definitely go with the midday chemo route.

Dante helps Adissa flush his line so he can take a bath before chemo.

"Okay, ladies, whatever. Just don't block my view there. I have to watch this video 17 more times today. I'm working on a guiness record..."

Dante reads off his numbers so Adissa can confirm the chemo.

So most of the day was spent getting him in the clear, de-accessed (taking the port out), and getting his insuflon put in. This is like a mini port installed just below the skin so we can give him his GCSF injections without actually poking him every time (everyday.) His
nurse, Sean, did really well even though I made him do it righty instead of lefty. And Dante did very well too. He gripped onto Jen's fingers and squeezed tight as it was put in and taped down. Sara was there too, arriving earlier to have Dante help her with Reggie's port removal. Come to think of it, Laurie was there too, enduring the wrath of a cranky Carina. I guess we had the whole gang there.....

Well, as I'm sure you know if you've been keeping up, this visit didn't exactly start off well, but in the end it went much better than our 1st visit. Although there are still some big issues that must be resolved (more on that later), over all it turned out okay.

Dante is much more comfortable with the staff - even though he (we) were still meeting new nurses until yesterday. And he is much more comfortable with the commotion and goings-on around the hospital.
He is really starting to bond with some of the nurses, particularly Nancy, Adissa, and Sean, though he is happy to see just about any of them. (The other day, every time Nancy walked by the doorway she would say "Dante!" and he would reply "Nancy!" or visa versa. It made both of them smile each time.) And of course, he is very fond of Dr. Grana. That boy will sit still for her through just about anything! In addition, he sleeps through more noises than I ever could, and endures more bullshit than I would ever put up with.

Yesterday, Dante asked for spaghetti and meatballs all day long, so for dinner, Uncle Mike helped Dante eat a bunch of spaghetti. We kept ordering the food he would ask for and then he would say "No". So, we started keeping some of it in the refrigerator so it was on hand when he did say that item. The nurses and doctors say that some days it is important for them to eat anything they want. I had to draw the line at more spaghetti for breakfast! At home, he seems to eat as he always has, just not as much. Perhaps he doesn't like the hospital food already. I think he eats more food from home than he does hospital food while we're there anyways.

Carina and Marybeth. Apparently they got dressed together.

Last night, as we were drifting off after books and
songs, he looked up at me, put his hand on my cheek and said "smoothy", as I had shaved earlier. Then he put his hand on his own cheek and said "Dante smoothy" with a big toothy smile. It continued with "Daddy a-rough. Daddy a-smoothy. Dante a-smoothy. Mommy a-smoothy and baby!"
I said "yes, Daddy's smoothy, but I'll be rough again soon."

He rubbed my cheek again and said "No, Daddy a-smoothy. Dante a-smoothy."
"Dante, where else are you smoothy? Where else is Dante smoothy?"
He reached up to the back of his head and with a big smile said "Dante a-head, Dante a-smoothy." At which point he reached over to my head and with a big smile said "Daddy a-rough. Dante a-smoothy!"

We met a family this time with a daughter, Sara, who has a rare brain tumor and has been featured in the St. Pete Times and BayNews 9. Sara and Dante had been in a music class on our first visit. It was nice to talk to another family going through a similar situation. They have a website as well telling about their story. They have been through so much more than we have so far and we wish them lots of luck. We are on the same chemo timetable, so perhaps we will be at the hospital together next time.

"Yo, I'm outta here."


  • So glad you are home where you can rest and heal! I know Dante will feel more comfortable and you will be able to relax a little. Loved all the new pictures and the tales of Dante!
    Hugs and kisses to Dante

    By Blogger ann smith, at 9:59 PM  

  • Wow! We are so glad you are home and able to have familiar surroundings (although I am sure the hospital is getting too familiar!)

    We are getting ready to rock and roll on Saturday at My Little Play Town and people who I know and don't know are so eager to help you all in any way they can. We can hardly wait to report the success and bring you some things!

    Lots of love and light-

    By Blogger CBC Barefoot Books, at 12:31 PM  

  • Chris Jen &Carina
    Were very happy that Dante is back home after round 2. Chris we loved your SMOOTHY talk with Dante. That's a story you will be telling Dante for many years to come.It's what i call a Dads special moment.As a Dad you will cherish it for ever. Love Dantes picture with the flaming baby legs.Hot stuff!!!
    love and our prayers to you all

    Dad,Lynda &John

    P.S. talk to you soon

    By Anonymous Anonymous, at 4:18 PM  

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