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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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© Roland Wooster, 2007. All rights reserved.