Saturday, September 30, 2017

8 Years Later

To my son,

8 years ago tomorrow, my life turned upside down. The world of our family would forever ever after turn on a different axis. 

On October 1, 2009, your daddy and I found out about your special heart. 

For years, on October 1, I would write a letter to the doctor who diagnosed us (I say “us,” because although the diagnosis was yours, medical crisis never happens in a vacuum. Having a medically fragile child affects the entire family)
But somewhere along the way, I realized it wasn’t about him anymore.

It doesn’t matter anymore what he did or didn’t say in that dimly lit room, how many times he recommended termination, or how surprised he was that we were choosing to fight for you. 

Yes, he was a part of our journey. He gave me empathy for newly diagnosed families. For me, he was my driving force behind starting Sisters by Heart

But, for you buddy, and the path that you’re on, he just doesn’t matter anymore. 

What matters is you.
Your bravery.
Your courage.
Your resilience.
Your love of life.

The whole of your amazing being that has absolutely nothing to do with your imperfect heart. Your silly personality. Your endless supply of love and hugs. Your big, big, big (and have I mentioned really really BIG?) feelings. Your comedic timing and well-honed sense of sarcasm, especially for a 7-year old. Your love of Legos, Star Wars and Hot Wheels. There is so much more to you than your heart.

Even so, the last year has been tough. One of the toughest in your journey to date. Your heart has been forced to sit front and center. I’m not going to lie. I am exhausted. Sometimes, the uncertainty of the path ahead is overwhelming. It’s hard to look down at your sweet face and not be resentful of everything you have to go through. I hope you know, your daddy and I would take this burden from you in a heartbeat. And if you asked your sister, I’m fairly certain she would line up to take it from you as well. Unfortunately, life doesn’t work that way. So instead, we stand beside you and cheer you on. And we research and advocate for you, to make sure you get the best medical care possible. And we embrace every moment we get as a family, doing normal family stuff. And yes, we make you do your homework. And your chores. And eat your vegetables. Sorry to tell you buddy, but that totally falls under the category of “normal family stuff.” 

So today, on the almost 8th anniversary of your diagnosis, I have nothing left to say to the doctor who diagnosed you. But this, I have to say to you. 

We love you so much. Your daddy and I have never regretted choosing life for you. 
Not for one second.
You, buddy, were worth fighting for. 
In that dimly lit exam room 8 years ago, and every moment since. 
And every moment to come. 
Don’t ever forget that. 



Saturday, September 16, 2017

When time is the biggest blessing you can hope for

As I mentioned earlier this summer, we would be going to Stanford for a transplant opinion. We had that evaluation done last month. 

Let me back up for a second. A lot of friends have been asking why we were going to Stanford when Bodie's care has been provided at CHLA up to this point. The answer is that we're not certain yet where Bodie's next steps will be taken - and we covet your prayers during the process of figuring that out. 

CHLA has taken such good care of Bodie and we are reluctant to leave. And CHLA does have a great pediatric  heart transplant program. However, there are a few things about Bodie's situation that will make his transplant journey more complicated (namely, his high level of antibodies and his size). Both of those factors will likely translate to a long waiting time for his perfect heart, which means we will need to be at a center that is both 1) good at managing antibodies as well as possible to reduce risk of rejection, and 2) good at bridging single ventricle kids to transplant, something most centers are woefully unprepared to do (not by fault of their own - there simply aren't a lot of good options for kids like Bodie - actually, there aren't any "good" options, only "less bad" options - options which will allow his organs to remain stable while waiting for a heart). In any case, Stanford happens to be at the cutting edge of both of those areas. Which is what led us to LPCH for a second opinion. 

This does NOT mean we will necessarily go to LPCH for Bodie's heart transplant. But we might. If we do, we will remain in Los Angeles as long as possible - until Bodie becomes sick enough to go inpatient, which hopefully will not be for quite awhile. At that point, Bodie and I (and Sierra at some point) would go to Palo Alto for this next step in Bodie's journey, while Dusk would remain in LA. But hopefully, these conversations are still a ways off.

Which brings me to Stanford. After reviewing Bodie's records and labs and fully evaluating him, they do NOT recommend listing him at this time! Put simply, he is on a positive trajectory (bloodworkd and symptom wise, he has only gotten better since his heart failure started last year), and they generally do not list kids when they are on a positive trajectory. At this point, the risk of a heart transplant is greater than the risk of remaining with his heart as it is.

This is great news. 
It is an absolute answer to prayer.
To be clear, it is the BEST possible news we could have received.

However, it does not take transplant off the table. 
Not even remotely. 
No one is expecting his heart to get any better. We all expect it to get worse, and at some point, it will weaken to the point where he will need to be listed for a new heart.  That could happen next month, or 6 months from now, or maybe a year or two from now. No one expects it to be much further out from that, but honestly, no one has a crystal ball. Bodie has surprised us all before, and he may very well do so again. A miracle is not outside the realm of possibility, given the sheer number of miracles we have already seen with this sweet kid.

We will continue to see our team here at CHLA every 3 months, and the team at LPCH every 6 months, unless things change. 

So where does this leave us? 
Living our lives.
Living the crap out of them. 
While we can.
Because we have been given this gift of more time. 
Time where our family is together. Time where Bodie's symptoms are managed well by meds. Time where can be a regular 7 year old playing soccer and doing his homework and complaining about doing chores. 

To that end, we took a trip to Disneyland last week. A good friend generously gifted us tickets and we took the opportunity to use them the day before school started. We had a blast. Made lots of memories.

 We'll close with this pic.
Because the force is strong with this one. 
So very, very strong.

Saturday, September 9, 2017

On Letting Go

Being so entrenched in the heart community, I have known about Camp del Corazon for years. It's a nonprofit here in Southern California that provides a week long summer camp on Catalina Island for children affected by heart disease. The camp is completely staffed by volunteer cardiologists, nurses and other cardiac practitioners. Kids can attend starting at age 7.

Earlier this year, Bodie mentioned to us that he wanted to go to camp this summer. Honestly, we looked at him like he had 2 heads. I mean, how can a 7-year old (who happens to be really clingy and loves his mama A looooooooooootttttt) really be ready go go away for 5 whole days? Not to mention a kid suddenly in heart failure and nowhere near stable enough for us to consider sending him anywhere away from us for any amount of time? 
So yeah, that was a hard NO from mom and dad.

But then, he became more stable.
And he became more insistent that he WAS ready. That he DID understand he'd be away from us for 5 days, and that we couldn't have any contact with him. And that he STILL wanted to go.

So Dusk and I thought about it. And we prayed about it. We were nowhere near ready for him to go. I mean, not at all. But we finally realized that if HE was ready to go, who are WE to stand in his way? So, in June, we applied for him to go to CDC and he was accepted. 

And this kid was SO right.
While I was a bundle of nerves the week before, wondering how on earth he <and I!> were going to handle it, he was cool as a cucumber. Packed his bag, hugged us, and took off. The kid barely looked back.
He was ready.

We were on pins and needles all week, wondering how he was doing. My sweet mom came down and we focused on Sierra, doing all sorts of fun things. It made the week fly, but we still missed Bodie like crazy!

When we went to pick him up, he gave me a huge hug and then promptly told me with a big smile "I hated it." 


And then, he spent the next 6 hours telling us all the fantastic things he did at camp. And is still telling us stories, a week later! Archery, skits, swimming, kayaking, crafts. So much fun!

As it turns out, he had a great time. 
And he made some great friends, all of whom have heart defects - and some of whom are just as complex as Bodie! 
(His entire cabin was 7-year olds also at CDC for the first time - they were the cutest thing ever.)

And some of the most amazing counselors were there, including our beloved Brenda!!!
But he missed us. A lot. And wasn't afraid to let everyone know. 
This kid, with his big feelings, is still having a hard time working out how you can be homesick and have fun at the same time.

But he says he wants to go back next summer. I'm taking that as a win.

I am so glad we sent him.

It was so good for Dusk and I, to not be the ones solely responsible for meds and watching symptoms all week long.

It was so good for Sierra. 
Until the moment she started crying, worrying that "someone will give Bodie the wrong meds and he will die," I honestly did not realize how much she feels responsible for him. She loves him, but worries so much about him. That's such a burden for a 10-year old to carry. 
The week gave us a wonderful opportunity to talk through those feelings and just to focus on her.

And it was so good for Bodie, even if he was homesick.
He came back so much more confident.
One of the highlights of the week was climbing a rock wall. 
They have a giant rock wall at camp and it's sort of a thing to be able to climb to the top of it.
When Bodie told me it took him 3 attempts but he made it, I was proud. I mean, my kid climbed a rock wall. But I figured he would. I mean, we try not to let him use his heart as an excuse generally, so I figured camp would be no different.

So I asked a counselor about this climbing wall.  
And boy did she put it in perspective for me. 

"It's a HUGE deal for any of these kids to make it up a rock wall after having their chest cracked open and they essentially have no upper body/core strength. But then you come to Bodie, who's been cracked open in the front 5 times and once on his side/ the fact that this kid made it up is mind blowing!!! You have an incredible little boy!"

Yes, yes we do indeed. 
I am so glad we sent our sweet boy to camp this summer. 
I lost a piece of my heart for 5 days.
But his sweet, imperfect heart grew exponentially.
Thank you from the bottom of our hearts, Camp del Corazon.