Car T Day +24: Family Reunion

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Beaudin’s ANC is 2000. He has not had an ANC this high since January of 2019. Any cancer parent reading this understands, 2000 ANC is *high*. We’ve been trained for the last two years to watch this number closely and hope it never goes above 1500, as that means more chemo is needed. So to see an ANC of 2,000 and not have that followed by orders to increase chemo was a welcome relief. An increasing ANC is good in that it indicates his bone marrow is thriving, but it is not connected persay to a successful outcome of the Car T treatment. Either way, watching your child’s bone marrow barely puddle along for over 2 years, and now be at 2,000 ANC after 4 weeks off chemo is a welcome sight to see! Similarly his WBC (white blood cells count) is 3.3, also higher than it’s been in two+ years.

As his counts continue to rise, so does his energy. Which is perfectly timed because this past week we had the whole family in Philadelphia and what’s more fun that three young kids in a small apartment, bouncing off the walls? The kids were all very excited to see each other, in the sibling kind of way where everyone was both laughing and yelling/crying more than they have in weeks. Beau and Jude had an especially good time using the hotel robes as Star Wars costumes (pictured below). And Selah was just glad to finally be in the coveted, “Fil-a-yell-fia.” We were able to keep everyone busy and got in a bit of sight-seeing, though I must admit that most outings to historical places end with Joshua and I agreeing to something along the lines of, “Forget these kids, we need to come here alone so we can read each word of each placard and not just keeping telling a different child to stop screaming.” The kids just wanted a field to chase each other around, so we made sure to make time for that.

One lovely afternoon we walked over to Rittenhouse square. It’s a classic city park in the heart of Philadelphia. Beau, Jude, and Joshua played hours of catch, while Selah and I walked around and listened to the music of street performers and observed the sights, of which there were many. It is an interesting experience to sit in a city square on a weekend afternoon, post lockdown. Everyone from the city gathers to “take-in” a small green square of land nestled between the dense high rises. While we wandered around I couldn’t help but think of how this city must have felt in April 2020 when everything came to a halt from COIVD. It’s one thing to reflect back on our cul-de-sac life, when it was easy enough to distance from our handful of neighbors and still very much enjoy the outdoors. It feels quite different to imagine this bustling and alive city park, where people come on the weekends to escape, emptied out. And a whole lot of people with no where, but a 2-bedroom apartment to escape to. Anyway, there we were. I hope no one minded that Selah just walked around and picked flowers off of every plant she could, filling up her shoe.

One very exciting thing the boys got to do was attend a Phillies baseball game. The manager at our apartment building (the AKA) arranged tickets for them to attend a Saturday afternoon home game. Only able to secure 3 tickets, it was a Daddy Date. The weather was lovely and the boys enjoyed themselves very much. Jude even got a post-inning ball tossed up by the left-fielder. Turns out, even a “toss” from a MLB player brings the heat so it bruised his hand a bit, but he recovered and now has the story to tell. They also got on the jumbo-tron! The Phillies stadium has a lot of fun things to do during the game so they also enjoyed some whiffle ball batting and carnival-like games. It was quite a fun experience for them. We are so grateful to our manager for arranging it, and really, the gratitude extends to the entire staff of the building where we are calling home. They have been so very accommodating. Truly, each member of the staff, house-keeping, door man, front desk, concierge, you name it, has been very engaging and gracious to us during our stay. Joshua and I often remark that we are so very grateful to have ended up here. If you ever find yourself preparing for a trip to Philadelphia, consider the AKA University City for your accommodations!

Joshua and the little kids went home yesterday and as with all things about this season it was bittersweet. It was a relief to return back to just Beau and me. It’s simple, we have our rhythms. And it was hard to say goodbye, yet again, as our family continues to trying and find our footing on constantly shifting sands. It’s hard on all of us to be apart, and although it was good to be together, it was hard still to separate again. Selah sobbed at the airport, crying to stay in Philadelphia and as I sought to comfort her and also not get yelled at by the airport security for taking too long, I all but barely kissed Josh goodbye and almost left without saying goodbye to Jude. No one feels fully taken care of in this mess and I know, I know, grace covers a multitude AND I am looking forward very much to the day when we are all together, at home.

With that, it’s hard to believe that this is our last full week in Philly. In some ways it have flown by, and in other ways I can barely remember what life felt like before this bonanza. Cancer, the time warp. I feel like I’ve aged 100 years in 5 weeks. This week Beaudin has his Day 28 bone marrow biopsy, lumber puncture and labs to check for signs of cancer as well as to check and make sure his t-cells are still kicking. We won’t get most of the results back until the following week, and at that point we are going to high tail it out of here and head home.

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