Steven's Rhabdoid Cancer Blog
Previous Month
April 2007
Tuesday May 1, 2007
After going back and forth many times about whether Steven would be well enough
to travel we decided things were never going to be better than now, so we
arranged a trip to Disneyland. After having ceased chemo treatments on Friday he
was now happier and no longer routinely being sick.
Wednesday May 2 - Monday May 7, 2007
Along with Jenn's parents we drove to Disneyland Wednesday, spent two absolutely
wonderful days at the park. Steven was thrilled with the sights and sounds, it
certainly seemed that perhaps Disney really was his "Happiest place in the
world" we had not seen him beaming with so many smiles in months, if ever!
Disneyland May 3rd, 2007
Saturday we visited the mission at San Juan Capistrano and
Sunday the Getty museum. I flew back Sunday night and Jenn drove everyone back
Monday.
Wednesday May 9, 2007
Finally we were able to get in touch with a counselor who works with children
and will be able to provide assistance for Nikki. Jenn setup arrangements to
start work with a hospice company that we've heard great things about. However,
Steven appears to be deteriorating very fast, he sleeps more than 90% of the
time, and wakes up because he's in pain and needs more morphine.
Tonight we had a awful experience of telling Nikki that Steven
was going to die. What made it hardest was we have no idea how soon it will be,
she was terrified that it would be tonight, and given the progression of the
tumor we couldn't promise that it wouldn't be, although it seems like it's going
to be very soon, the doctors and hospice think it he may last several weeks.
Friday May 11, 2007 - Steven's 1st Birthday
Tonight we celebrated Steven's 1st birthday, cake was nice, but we weren't able
to coax a smile from him, he's now on both morphine, and methadone, which apart
from dulling the pain, makes him incredibly sleepy. Jenn's family were able to
join us for his birthday, her parents are still with us, and uncle Brad was able
to spend a few days visiting.
Saturday May 12, 2007
We visited Marine World in Vallejo. Steven woke up twice, once to see the
butterflies, and one for the killer whale show, it was nearly impossible to get
him to wake up and look at anything else.
He's started to have breathing issues, and had a terrible fever
last night, vomiting several times before finally falling asleep for the night.
Tuesday May 15, 2007
Steven stopped feeding Monday evening. We've been working with a wonderful
person from hospice, Beverly, who told us that he likely only had 2-3 days left
after he stopped feeding. He has been sleeping 99% of the time, barely ever
opening his eyes.
Wednesday May 16, 2007
I stayed home today to spend time with Steven. Although he continued to sleep
all the time as he had since Monday, and continued not to open his eyes we sat
with him to read books to both Nikki and him. We talked to him all day, and
often slipped a finger into his hand for him to hold on to us, just like we did
the day he was born.
By about 5pm his breathing changed in the manner consistent with
how we had been advised it would likely change just prior to him passing. The
four of us sat in the swing together, he cracked his eyes open but really
couldn't focus or see us, I think he was mostly looking at the light.
Around 7pm we were inside and Jenn played the "12 Dancing
Princesses" sound track, it's a Barbie movie that Nikki has fallen in love with,
he used to giggle and laugh watching Nikki spin and spin and spin. He used to
love it when Jenn would pick him up and dance with him to the music. Tonight, as
if he had been waiting to dance with Jennifer for the last three days and had
been holding out for this, with a flood of emotion and tears Jenn danced the
whole CD with him. At the end of the last track she laid him down on his
favorite duvet. He almost immediately opened his eyes wide open, they sparkled
like gems, the three of us crowded around so he could see all of us, he smiled
and then passed away at 7:20pm. It was the most beautiful peaceful passing we
could have ever imagined.
Steven we miss you dearly, our hearts are filled with your
love,
we will look for your star every night.
Steven's Last Picture - May 16, 2007
Thursday May 31, 2007
Today was Steven’s service. It was a very small and private service with just a
handful of people in our garden. We sat on picnic blankets surrounded by lots of
blue and silver star-shaped balloons. Each of us went around to share memories
about him and what he meant to us. It was touching to say the least. Afterwards
we looked at photo albums and our latest video of him. Nikki made a picture for
him and later that night as we took our daily walk to see “Steven’s Star,” we
sent Nikki's picture it to him on a balloon.
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