Week Twenty-two

This week left us all feeling just a little bit…odd. Coming to end of a process always leaves people with mixed emotions and Robbie’s final days of chemo were no different.

I’ve already written about how wonderful Relay for Life was on Saturday. We purposely left Sunday free for recovery which worked out. On Tuesday, he was packed and ready to return while Deb headed to New York for a trade show, not at all happy about missing these milestone days. Robbie was excited, looking forward to the end, the party to commemorate the experience, and seeing people he’s come to look upon as friends.

We wound up spending most of the day in the clinic since we had to wait for a discharge up on 7-West. As a result, Kate and Robbie played Set with other patients along with Kat from Hole-in-the-Wall. When we finally made it to the floor, we were in 720, a room we somehow had not been in before but afforded us with a view of the girder with his name on it.


Sarah was his nurse and the two bantered back and forth as Sarah tried to teach a new floor nurse, Molly, what needed to be done. They worked out the timing for his chemo so he would finish around noon on Thursday. Of course, he sought out a TV on a stand so Guitar Hero was ready for all comers. Kate and I left him happily chilling. Sarah offered to treat him to Chinese food as a farewell gift so we knew he’d eat. Apparently, he also stayed up to all hours, playing cards with Mikayla, the 9-year old he befriended (and a fierce competitor) and Maggie, one of the residents.

On Wednesday, the anti-nausea drugs did their work and he was in far better spirits than last week at this time. One of his favorites, Jess, was caring for him and she visited to chat now and then. Dr. Kupfer said his counts were looking good but Jess had already warned us he was likely to need red blood cells. Robbie asked for them to be administered over night, so she made a note of it.

Kate and I barely saw him as he went to play group at 2 followed by a fellow patient’s farewell party. Around 4:30, we were chatting with Dr. Massaro, Becky the nurse-practitioner and Jess, waiting for things to get started. At 5, we all trooped into the playroom and it was full of patients, doctors, nurses and visiting residents who had dealt with Robbie at one point or another.

He was given a series of gifts, starting with a medal for making it this far. We in the family were given Pit Crew pins to recognize he wouldn’t have done this well without us. Then he received more personalized gifts such as a gift card to Dunkin’ Donuts, his own copy of Set, some Disney paint-by-yourself magnets and then the real stuff: a Child Life book and workbook plus his own Child Life magic wand, essential items to begin him on his chosen career path. He also received a book signed by a variety of staff and patients complete with pictures; something akin to a yearbook. A wonderful keepsake for the future.

There was music and chatting and cards games with Matt, Mikayla, and Grace, a chocolate cake and an emotional, but happy, experience.

He left for Teen Group at 6:30 so Kate and I went home. After working with the others to make a Crazy Eddie-style commercial, he ordered out for pizza as a treat and called it a night.

Thursday was supposed to be over by 1. However, some massive miscommunication between the doctor-on-call and the nursing staff meant he never received blood overnight. His morning counts called for two units of red cells plus platelets. We were settled in for a long day. With Benadryl in his system, he was tired and tried to sleep but the steady stream of people meant he stayed up so remained in bed, too tired to go play cards and therefore also somewhat grumpy. Carol gave us the detailed explanations of what happened and how and worked to make him comfortable. We were finally done and out by 5:30, with hugs, handshakes and best wishes.

As we walked out of 7-West, it occurred to me that unless he has a fever and is readmitted, I’m done with the floor and its terrific staff. Our next few months will be strictly clinic visits until even those will stop or he’s able to go entirely on his own.

He’s in remission. He’s pretty much been in remission since the first round but we never dared say the word since the road ahead was long. He’ll have a final bone marrow biopsy in 6-8 weeks and if everything is clear, soon after the broviac will be removed. The summer is being dedicated to healing and rebuilding his strength and stamina so he can resume coursework in the fall, keeping to his plan. Back in January he always told people this was just a bump in the road and he’ll be fine.

So far, the kid knew exactly what he was talking about. We couldn’t be prouder of how he has handled this and think this may have set his course for the future. His exposure to Child Life services has kindled his interest and he’s adjusting his course load to prepare for the major. He’s had long talks with the various Child Life staff and all have been encouraging. Every doctor, nurse or parent who hears of his interest agrees, he’s a natural.

This ends the weekly updates. As things develop, I’ll post them hear, but Robbie’s story is taking a break. There will be little of note to report for a while but I want to publically thank everyone for their notes, e-mails, cards, and gifts. We’ve been humbled and amazed by the outpouring of support from all corners. There’s much our family needs to pay forward and we won’t lose sight of that.

Thank you, one and all.

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