Thursday, July 28, 2016. As I sit here at my home away from home (the 14th floor at NY Presbyterian Hospital), I continue to think about this past weekend. Although Jen had her doubts about whether I would actually get there, I don’t there was a question in my mind
— at any point — that I would spend this past Saturday (7/23) at Takajo for Jake’s first visiting day. Sometimes things just work out the way they should (notwithstanding lots and lots of headaches and heartburn leading up to that moment). Saturday was one of those days. It was all about Jake (including the awful rash he developed on his rear end (and leg, thigh and chin) that he would wait weeks to show the only person he was comfortable showing it to: his mom of course! It was also a “normal” day. And normal can sometimes be a beautiful thing, especially when you haven’t felt normal or like yourself in a long time.
Other than Jen making sure I was feeling OK a few times in a very subtle way, the day was not about how I was feeling or what the last couple of months have involved. There were even moments where I think everyone was able to “forget” for a few minutes and enjoy the moment. The poetic part about all of this was realizing that my son was experiencing the same thing that was such important part of my life starting at 10 and extending through most of college; being able to put everything else on hold for 7-8 weeks, developing lifelong friendships, living in the moment and just being yourself without the pressures of everything else that you deal with on a daily basis during the rest of the year [and of course, I understand the pressures in my life as a kid were nothing compared to the pressures that most people deal with, and just being able to go to camp is a blessing in and of itself, but we all have pressures…]. Watching Jake run around the soccer field, interact with kids and counselors inside and outside his bunk and show me around the camp, including the various basketball courts where he likes to spend most of his time, was the happiest I have been in a while. There was something about being there and being with Jake (and the rest of the family) that really allowed me to be my old self and walk around camp the entire day. It actually felt good watching people whizz by in golf carts; I made a pact with myself that I was not getting in a golf cart at any point during the day (Jen was going to tell Jake that we won a raffle that would give us access to a golf cart all day). Most importantly, it felt good watching Jake, who seemed to be in his element and really making the most of everything camp has to offer.
I think this picture says it all. There is no doubt it is a picture that will have lots of value for me and Jen for MANY different reasons. I look at this picture and I am so thankful and grateful. Definitely worth a frame.
Huge thanks to Jake’s grandparents (and Jen for orchestrating everything as usual). Both sets of grandparents have been there every step of the way, including in Maine this weekend. These are people who always (and continually) go above and beyond. The Sussberg’s flew in from Florida. The Nelson’s drove 14 plus hours from Philly to spend a total of 18 hours in Maine. And everyone helped to make an important day a complete success. From sleepovers at the hotel, helping with Brandon (who was ready to leave about 30 minutes after visiting day started (Helene and Brandon spent some quality time at the water front and Janet and Allan picked Brandon up from camp mid-day)), being with Jake — who I know appreciated having both sets of grandparents over the course of two days — to chauffeuring us from Portland to camp and camp back to NY. Allan even kept his heavy right foot off the brake most of the ride back. Thank you all for being there. I have a lot of pride (admittedly sometimes too much), but I do not have too much pride to say after the fact that there is no way we could have done this weekend or visiting day itself without all you guys being there. [No doubt we left it all on the fields at Takajo: I slept an hour or two in the car on the way home Saturday night and from 10:30 pm to 10:00 am (without moving) Saturday night into Sunday am. Thanks (as always) Jen for taking care of me, the boys and everything else.].
We started the next phase of treatment on Tuesday (I think we are in Phase 3). This next phase necessitates a hospital stay for a Methotrexate injection, followed by Leucovorin Calcium injections to help ensure proper function of your kidneys (and other key organs). I am told it typically takes 3-4 days until you are back to normal operating levels following the Methotrexate injection (we told Ryan I was at a bankruptcy conference in Delaware this week). This all gets repeated in 14 days. The Methotrexate injection started late Tuesday night and went into early Wednesday am (about three hours). I am really hoping to go home tomorrow. Feeling fine (not great, but fine). Not experiencing any real side effects at this point (still no hair loss; I am actually growing hair at a faster clip than usual — and of course it is everywhere I don’t want it). But I can admit I am moody, irritable, tired (it is hard to sleep in a hospital) and undoubtedly ready to release the pause button and let life start playing again. All in due time….