Week Twenty-one

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With Robbie cleared, we began our weekend with a trip north. He was delighted at the chance to join his family at the celebration of his cousin Monique’s wedding party. The actual ceremony was in Aruba back in April but this was a party for those of us who couldn’t attend. Everyone looked fabulous and we had a tremendous amount of fun. He couldn’t eat the catered food so his uncle John arranged for the bar to send up a cheeseburger and fries. At least he could have the desserts.He lacked energy on Sunday, the price paid for fun these days, but that was fine as we sat around his Aunt and Uncle’s house before the drive home.On Tuesday, Kate and I took him in for admission. As usual, it started in the clinic for blood work and the bone marrow test. While awaiting the counts, the two of them played with the Child Life folk and some much smaller patients. Robbie endured the bone marrow with ease (and a few grimaces) then returned to the infusion room where we awaited a bed being available up on 7. Again, the kids played including the charming moment of Kate trying to teach an enraptured eight-year old girl how to play Guitar Hero.His arrival on 7-West was like the solider returning from overseas. Everyone stopped to say hi or checked in on him later. The first hour was spent with various doctors and nurses coming in to take vitals, check his status, review his meds and discuss the protocol. Kendra, the new Child Life specialist on 7-West, also spent time with him. The chemo began around 5 so everyone set their watches since the second drug had to be administered at hour 42.On Wednesday, Kate and I returned and the chemo had knocked him flat. He was sick all day, sleeping largely until 3 as various anti-nausea drugs went to work on him. We sat in semi-darkness, working on our projects until he was awake and feeling better. With each passing hour, he became more alert and more himself. The two watched Juno on disc while I worked. Later, Kate ran out to collect Deb at the New Haven train station so she could visit. By 8:30, he was actually hungry so Kate and I hit the streets in search of food since food service and the cafeteria were closed by then. We found him a fresh pizza which he ate happily.Thursday, I went up alone to collect him. We packed him up and a little after 11 a.m. he received the shot of chemo. He had to wait an hour to make certain there’d be no reaction so we finished packing and chilled. On our way out, one of the choice rooms was empty and we went to gaze at his name high in the sky.For those who have seen the movie theater commercial of the workers building a cancer hospital for children we had it play out in real life. Apparently, during his last stay one of the workers came by and got the names of the kids on the ward. While we were gone, the girder with the set of names, including Robbie’s, went up and into place. He gazed out long at it, recognizing the names of patients he spent time with since January. On Tuesday, one of the nurses gave him a gigantic nut and bolt from the project, left as a souvenir after the girder was in place.It’s a little hard to believe that after we repeat this Tuesday through Thursday next week the chemo treatments are done. The waiting for a long-term outlook begins but the actual hospital stays comes to an end. For Robbie, it has been a social network and a transformative experience. We’re all looking at the end of this stretch of road with mixed feelings.

2 thoughts on “Week Twenty-one

  1. Hi Bob and Robbie, I’m tracking ya progress for sure 🙂 I hope it will never be an issue, but if ever ya need a bone marrow donor – which I’m sure you can find within the family, I’d be willing to test!! Robbie, my healing wishes go to you. You’re a fighter, you always were. Kerry x x x x

  2. I finally found your blog again! Best wishes to Robbie, and I love that the building itself will carry his name and experience in its bones. Very cool.I went to a party last night (I’m awaiting permission to blog about it, which may or may not come) of a friend who was celebrating the end of her cancer treatments by throwing a concert in her home with her doctors, nurses, friends and neighbors invited. Her husband and her oncologist were among those playing their instruments in celebration of life, while her teenage son kept busy by manning the camera.

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