Archive for category: ht

It occurred to me earlier today, after multiple people asked if we were home, that I had not updated last night.  Heath got home from the hospital around 5pm Saturday–we had to make a deal that we’d come back first thing this morning for labs, but we were home!   A little Chinese take-out, a fire, college football and the Braves pulling out game 4!  Yes, please.  You had one happy boy!  At one point all members of the family who were in the house were piled in our bed watching the game, so you had one happy mama and one cranky dad. He was just pretending, I think.  At least until EB took his spot, with Rosie on top of her.  At least Chris had some good scotch.

Wilson is living his best life as his own version of the Chick-Fil-A cow on a fun trip to Virginia to see the cousins. Apparently he rode through the drive-thru fully-costumed yesterday and got some free fries from some really humored CFA employees.  We are grateful for Ama and Grandpa taking our fella on a little excursion, and for all our Virginia crew for giving him a little extra love on this different sort of Halloween.   

EB drove herself to hang with some friends tonight, and to the store to pick up extra stuff for her costume.  So there’s that.

Multiple times today we’ve looked at each other and reflected with neighbors who have their own reasons for a “lower key” Halloween, and said, “this is just a year to do what we need to do and make the best of it.”  And we have–Chris, Heath, Rosie and I took a drive to Bruster’s to do our own Italian ice/ice cream trick-or-treating.  It was delicious.   Rosie wouldn’t wear her costume, but that was ok too.  It was the first time in 16 years that we weren’t wrangling at least one child or adult into a costume.  And that was ok.

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We got a little yard work done.  Most of you know that I am a gardener and avid home-improver.  It was incredibly satisfying to get just one small portion of my outdoor to-do list checked off, and I even found one last daisy that was still vase-ready.

We slept in our own beds and will for the next couple days, and for that we are grateful.  Heath’s numbers were ok today and we’ll have a nephrology appointment in clinic tomorrow with another lab check and as long as things continue ok, we’ll be heading in on Tuesday morning at 10 a.m. to start the next cycle.   In the past couple days at Duke, his ANC (Absolute Neutrophil Count–measure of number of neutrophils–type of white blood cell–in the blood) went up really quickly to “normal” after his 0 only a few days before, which was good.  Perhaps the fever was the point of the upward turn.  No one is completely sure, but there was no other source of fever that was found, which was also good.  We learned that some of Heath’s meds may not be absorbing well due to the ostomy, so that was a new wrinkle on which the team will continue to work.  Adding heart transplant and ostomy and all the things that go with them makes everything in cancer treatment just a little more complex.  That’s how we roll.

We’ll update later in the week as we settle into chemo week.  If we stay on track, this is the next to last cycle, so we’re trying to find some energy and hope in the moving forward.

Chris and I were taking Rosie (the puppy) for a walk this morning, talking about how we knew we should not expect her behavior to miraculously improve on this milestone birthday.  But we can always hope…(see, there is my theme of hope again.)  And then, right in between us on the ground…SPLAT. Bird poop. 

We stopped and looked up.  No bird.  But also, no wires, no trees, or any other things for a bird to sit on.  So, some bird way up high happened to poop just then and it happened to land on the ground right in the middle of that small triangle the two humans and puppy formed as we walked down the street around 7:45 Friday morning.  We weren’t sure whether that was a good sign.  Or a bad sign.  Sometimes we actually feel pretty lucky all things considered (please set all of the theological thoughts aside, people!) Sometimes we feel like bad things keep happening, over and over.

This has been a weird week.  Heath feels pretty good, certainly much better than we had anticipated, so far.  His blood numbers are actually not neutropenic at this point.  We had a really long day on Tuesday at the CHC (Children’s Health Center clinic at Duke) where he had outpatient lumbar puncture, labs, ostomy change and then an unexpected blood transfusion.  Hemoglobin was a little low, so they did a transfusion to give him a “boost” before it went WAY too low.  I do think it helped, but the waiting and late afternoon in the infusion space at the Day Hospital was almost more than this mama and boy could take.  For some reason it really brought the stress of this whole situation to a head–which just highlights that this is a hard, sad, exhausting road.  Our oncology fellow mentioned to me that they see some of this about half-way through treatment as folks know the hard road they have traveled so far and see about the same amount ahead. A weird mix of gratitude and dread.  We’ve talked through some ways to help cut some of that clinic/day hospital stress/anxiety, so we’re hopeful moving forward.  A quicker day on Thursday in clinic for Heath and Chris–a little school, labs and ostomy check was helpful (and, his labs looked good!).  He just told me that he thought he might be ready to try a cheeseburger. Step by step. 

We’ll hope we stay like this through the next week.  We are grateful for how well the week has gone, but it also feels like the exhaustion is catching up with us.  We feel like we’re moving through quicksand, and find ourselves forgetting simple things.  Or stopping mid sentence:  “What were we talking about?”  All of you who are caregivers know this especially, but anyone who has waded into the deep waters of grief.  It wears you out.

So today we’ll be celebrating Rosie’s 1st birthday.  As frustrating as she can be in her super smart “I know exactly what is going to make you crazy so you will pay attention to me” puppyhood, we also are so grateful for the joy and comfort she brings to us.  Chris is not so sure about the “closeness” (she is like a cat and seems to know exactly who DOESN’T want her to sit or sleep on top of them, and it is usually Chris.  hee, hee).  We’re glad to be her humans.

We are also beginning the celebrations for our almost-16-year-old (10/25 is EB’s birthday).  As we dive into insurance and parking passes and driver’s license paperwork, I keep thinking, “how is it possible that she’s 16?!!”).  More on that later in a later post, likely accompanied by mama tears.

My friend Beth used to say something about how if you had to pick one or the other, you should pick well-behaved children and poorly-behaved dogs.  At least we have that going for us (most of the time).  Rosie helps our perspective in so many ways.

Today we’ll consider ourselves lucky in quite a few ways, the least of which is managing to escape the most random of bird poop.  Maybe a cheeseburger.  Maybe a sit on the porch.  It’s hard to see too much beyond that today, but I don’t think Rosie is the least bit worried about any of it – which isn’t a bad way to be.