The Hard Launch

I like to refer to Bodie’s transplant summer as Sierra’s “soft launch.” Completely unexpectedly, I was forced to learn to live 500 miles away from my sweet girl last summer, as she got a crash course in independence and forging her own way.

I thought that prepared me for this week, her hard launch, as we dropped her off at college.

In a way, I suppose it did.

But even so, walking away from this girl, everything we have poured our hearts and prayers into over the last 18 years, and leaving her 2,000 miles away, was hard. It felt surreal. It’s as though our hearts are bursting and breaking at the same time.

Bursting with pride over how ready she is, how brave this decision was, how many wonderful moments lie ahead for her.

But also breaking with sadness over an era over, a family life that will never be the same.

I turned to Dusk as we walked into the airport this afternoon and said through tears “You know how when you read a really good book, or play a good game, or listen to an amazing record and you get to the end, you want to immediately start it all over again? That’s what dropping her off at college felt like.”

And then I had to stop and modify my thought a bit, as I’d love to start all over again, but maybe skip over the teaching her to read bit, and definitely the potty training part…also, not sure I’d have the energy to do the toddler years again.

So, yeah, lot of mixed feelings. For both Dusk and I.

But I read a quote earlier today that really resonated with me – “Healthy birds fly the nest.” I’m choosing to ruminate on that in moments of sadness and emptiness.

But our girl? She’s gonna do great.

She’s moved in, and settled, and already exploring her new home with her roommate, a sweet girl from Georgia.

We think she has most of what she needs (even, yes, a pillow of her beloved Toulouse to watch over her). And whatever she realizes she needs, she’ll find out how to get.

I put on my big girl panties and my brand new tee shirt and got ready for the goodbyes.

I did pretty well and didn’t cry until we left. The final hugs goodbye were hard, for both Dusk and I.

We hugged her and prayed over her, asking God to continue to protect her and guide her.

And then I cried a little more.

And we waved goodbye as she and her roommate giggled together and wandered into a darling vintage thrift store bearing IU clothing…and the start of her new life.

Spread those wings and fly, my sweet girl. You were made for this.

Just don’t forget to come back home once in a while to tell us all the things you see out there.

Summertime Blues

I’ve been meaning to write this post all summer, but kept delaying it because I wanted to wait to write it until I had something to post about Bodie’s ITP treatment. And, that, unfortunately, didn’t really improve until the end of the summer.

This kid has been such a trooper.

We’ve been making weekly trips down to Rady Children’s Hospital for labs and N-Plate injections for his ITP. After seeing an initial little jump to 25,000, his platelets leveled out in the 20,000s by early July, and sat there until last week. As a result, we weren’t clear to go to Stanford for his annual cath and biopsy, or to Tahoe for our annual family vacation…or anywhere, really.

It was a better summer than last summer, to be sure. But let’s be honest – that bar saw set pretty low. Even so, Bodie was bummed. He just felt like he lost 2 summers in a row. We did what we could – we played a lot (and I mean A LOT) of Pokemon Go with him, driving to local community meet-ups and walking a lot to catch cool creatures. He managed to get Dusk and I almost as addicted to Pokemon as he is (almost). We also tried to do fun things like trips to Menchie’s (his absolute favorite) after his appointments.

Since he had stabilized at 25,000 without major bleeding incidents, his Hematologist cleared us to do a day at Seaworld. She cleared him for all of the nonagressive rides. I’m not 100% sure her definition of nonaggressive is quite the same as ours, and we probably took a few liberties, but it was so worth it to see this smile!

We also got to take a 3 day trip to Palm Springs last week, which was a wonderful respite. Not nearly long enough, but at least we had an opportunity to take a break from work and spend some quality family time together.

At Bodie’s appointment last week, he had finally hit max N-Plate dosage, and his platelets had jumped to 70,000! It was amazing and exactly what we were hoping to see happen! His doctor was so excited. We’re hoping that’s where they’ll sit now, and it’s exactly where they want him as long as he’s getting the injections (normal is 150,000-400,000, but with patients on platelet stimulating medications like N-Plate, they don’t want them that high due to risk of overcoagulation.

Now we wait to make sure they stay in the range we want.

Then, we can go to Stanford for his annual cath and biopsy (they had been planning on doing something less invasive due to his lower platelet count, but now that he’s higher, I think they’ll want to do the regular annual testing).

After that, it’s anyone’s guess what the next steps are. N-Plate isn’t really a long-term solution, as driving an hour to the hospital every week forever isn’t exactly a good quality of life. If the medication continues to work well for him, we can consider switching him to an oral version of it, but it doesn’t always work the same as N-Plate, and there are dietary issues with it (calcium affects absorption of the medication). So we’ll hold off on that discussion for now. One step at a time. His team may also consider switching up his immunosuppressants to see if they’re causing the ITP. But before doing that. they’d need to do a cath and ensure everything looks good with his heart. Preservation of this special heart is our most important goal. Everything else comes second. So, again, one step at a time.

In the meantime, we’re breathing a little easier, even if it meant Bodie didn’t get the summer he wanted. He’s experienced a huge growth spurt, gaining 25 pounds since April and at 5’9 1/2″ is neck and neck with me (and is now shaving, but I didn’t tell you that)! His body is clearly in a happier place right now.

He started school last week. In true high school boy fashion, he refused a good first day of school picture. This was the best I got.

Wouldn’t even put his shoes on. But I’m choosing to pick my battles.

He’s cleared for heart camp, and we drop him off for that next week. But first, we drop his sister off for college! Big changes around the Bennett household.

We covet your continued prayers that Bodie’s platelets stay in range, further interventions won’t require him to miss much school, and we all adjust to our new family dynamic with Sierra off to college!