Friday, May 30, 2008

Feeling Lucky

Got out of Children's today at 5:00. Excited to get home and see Whitney.
Ashley vomited in the morning and again at noon when we were supposed to leave. That 12:00 vomit kept us there an additional 5 hours. We got to the van with a stack of towels and rubber blankets draped over the seats. Ashley vomited in the parking lot. We didn't go back in. She seemed in pretty good spirits so we drove home. We pulled over 3 times. Three towels, three outfits now in a vomit garbage bag. She did ok at home eating a few noodles and rice and fell asleep at 9:00. Back up at 1:00, but happy dancing watching Elmo. She just vomited at 3:00. We finally were able to give her more nausea medicine. She seems to be holding it down and now is getting sleepy. We are back at Children's at 11:00 today , just 7 hours from now. Hope to get some sleep and hoping Whitney sleeps in late. I've got another stack of towels for the ride in at 11. I'm doing some chemo laundry now.

Some statistics: there are only about 100 reported case of Hepatoblastoma a year in the country. Of the 100, 87 are boys, 13 are girls. Also of the 100 only 25 get to cut it out on the first shot. That means that 3 or 4 girls in the US have the diagnosis that Ashley had and the prognosis. Stage 1 with a short chemotherapy regiment. We always knew Ashley was one of a kind.

We have met other parents at Children's that would do anything for the Stage 1 with 12 weeks of Chemo and survivability in the 90%'s. We met a parent from Alabama. Her 3 month old has Leukemia. They gave her 20% chance of living after diagnosis. She is 9 months now. The odds for her went to 40% after a bone marrow match was found. They came to Children's because the odds at Children's brings it to 75%. They live with the fear that we had for the first week or so all the time. They have left their jobs and live at the Ronald Mcdonald house down the street. They have been here since March. WE ARE LUCKY!

We are lucky that Children's is 9 mile away and they are top 10 in the country for Cancer.
We are lucky that Dr. Donna and Dr. Wu found the tumor on May 9th.
We are lucky they think they got it all and it is stage one.
We are lucky that our Chemo is only 12 weeks and not 3 years like some kids.

Children's has been incredible. We saw Minnie and Micky handing out stuffed animals yesterday. Too bad Ashley was still in recovery. They have new toys that have been donated, afghans that have been knitted, clowns, musicians, and volunteers. We had a volunteer come to our room bring us toys and and afghan and a latte. She had a bag. We asked her where she got it and she replied it was a gift to her and that she get so many compliments on it. It was one of Uncle Wayne's sparrow bags. I told her that was my Uncle Wayne Nakata and this is Ashley Nakata. She was excited.

Ashley just fell asleep in April's lap. I'm going too.

Tony

1 comment:

Susan said...

I'm so happy to hear that Ashley was able to go home after her first round of chemo. She is such a tropper! We'll be thinking of you all today at playgroup; looking forward to the Friday when you all will join us again. Love, Susan and Simon