Life on the Struggle Bus

The good news is, we’re back home! We returned home Tues, the 11th, and have been settling back in since then. Physically, Bodie has recovered well, and his bloodwork last week showed a CMV viral count of “not detected!” Music to our ears, since, although his viral load had been going down, that was our first not detected. He has to get one or two more “not detected” before he can stop the weekly blood draws and come off the antiviral medication, so we’re praying that tomorrow’s blood draw also shows “not detected.”

His neutrophils (what help him fight off infections) have come up a bit. They’re still very depressed, but have at least finally come back above the critical 500 mark (to put it into perspective, “normal” is 1,800 – 8,000 cells/uL, Bodie’s team likes him to be around 1,000, he’s currently at 527, and anything below 500 is extremely risky). So we’re moving in the right direction, definitely – just have a ways to go still. And his liver labs are looking better, too! His white blood cell counts are still low, but the team is hoping that will start to trend better after he gets off the antiviral. It’s still a lot of chicken and the egg in terms of whether it’s the virus or the treatment that is/was driving his WBC and neutrophils down.

He is unfortunately struggling with canker sores, a common side effect of the new immunosuppressant he is on. It’s a side effect we were warned about and were prepared for. But despite the ointment and steroid rinse his team prescribed, the combination of canker sores and braces aren’t doing Bodie any favors. We’d really appreciate prayers that we can get the sores under control and healed quickly, because he’s in a lot of pain.

He was able to go back to school last week, which we (Dusk and I) are so grateful for. Bodie is less enthused. While he is excited to see his friends and get some normalcy back, the whole school thing is hard. I mean, really hard.

It’s hard to express how much the transplant and the ensuing months have fundamentally affected Bodie’s academic progress. Over the summer, when his peers were going to camps, swimming, relaxing and getting a much needed mental break, he was in the hospital and recovering from major surgery. In the Fall, he missed the first month of school because we were still up North. Despite my best efforts to help him stay on top of academics, he was behind when he started the school year and spent the entire semester playing catch up.

We were so excited to start this semester fresh, without having to constantly play catch up. And the first 2 weeks of school went great!

And then Bodie caught RSV. And missed 2 weeks of school.

And then went back to school for 3 weeks.

And then he caught CMV. And spent a week in the hospital.

And missed another 3 weeks of school.

So, this semester, he has already missed 5 of 11 weeks of school.

And it’s not getting better any time soon. Tomorrow, in addition to his blood draw in the morning, he has a 2 hour doctor’s appointment in the afternoon. Next week, he’ll have to leave school early on Tuesday for an appointment with the LPCH Infectious Diseases team and will have to come in late on Friday after an appointment with Rady’s Hepatology team. We schedule appointments outside of school hours when we can, but when it comes to specialists, it’s a lot of “thank you sir, may I have another” to whatever time they deign to fit you into their schedule.

His teachers are really nice. They are quick to provide accommodations when they can. They all care so much about Bodie.

But, at the end of the day, it’s very overwhelming.

If you ask Bodie, he’ll tell you most of his days are spent like this.

But if you ask Dusk and I, we’ll tell you it’s more like this.

Yes, it is absolutely as melodramatic as it looks.

Bodie is easily overwhelmed. And there’s a lot to be overwhelmed by. And his school is a classically inspired charter school, and very academically rigorous. Freshman year is hard enough. And it’s extra hard for him because of all of this.

Combine that with Amy struggling to get caught up on work she missed when we were up north.

And it just adds up to a lot of time spent on the struggle bus.

We’re all pretty tired of the same conversation ad naseum in our household:

Amy or Dusk: BODIE! Focus!!! Sit down and do your homework! You are so behind, and are just going to get more behind!

Bodie: But why??? It is SO HARD to get caught up! And then what happens? Stanford will call me again and tell me they want me back in the hospital, and then I start all over again!!! Why do I bother doing this?

The thing is, he’s not wrong. All of you parents of teenagers who argue about homework and feel like it’s just so hard. You get it. Now try adding in the stressors we’ve had health wise, and the added guilt of everything your kid has been through just to be alive. And some days you just want to throw up your hands and say “you’re right. You missed out on your summer. This year has been so hard. Math doesn’t matter. Biology really doesn’t matter. And I’m tired and just really need a vacation. Not like a trip where I get the flu so it really isn’t a vacation. And definitely not a hospital stay. Like, a real vacation. Because I am just so freaking tired right now.”

But then we realize that if we take that approach, the kid will never do an ounce of schoolwork again and end up repeating 9th grade.

It’ll totally end up like Groundhog Day.

And so the vicious cycle begins again.

So, like I said, we’re on the struggle bus over here.

Which I suppose is a good place to be. Because, in some weird way of looking at things, it means Bodie is doing well. Physically, he’s doing so well that we can focus on the other stuff. Like doing the dishes, and cleaning up after himself, and math and biology.

But, sometimes (ok, a lot of the time), when you’re on the struggle bus and it’s careening all over the place, it’s hard to be grateful for it. But we’re working on it.

So, this is all to say – THANK YOU for your continued prayers for Bodie! Your prayers got him back home again! Now please pray we can keep him home and life can settle into a more normal routine for us! And for those darn canker sores to heal!

So this is fun...

Bodie tested positive for Norovirus this weekend (yes, the gross cruise ship barfing disease that’s all the rage this cold and flu season). The general consensus is that either it was a false positive or he had a mild case of it. Either way, it earned him a few more days of isolation.

But thankfully, he was taken off isolation this afternoon! We happily celebrated by spending several hours in the teen room, building 3D projects and painting magnets, followed by Pokémon hunting around the hospital and dinner downstairs. It definitely was a good day, a bright spot amongst the doldrums of hospital life.

The good news is, his symptoms have pretty much gone away completely. Although he had struggled with the fatigue and night sweats for a few weeks now, the acute stomach pain just started at the end of last week and mysteriously disappeared after a few days. Whether that was because it was attributable to CMV and we’re treating it now, or whether it was Norovirus remains a mystery. But at least his symptoms are gone! He says he feels like he’s sleeping better now, and actually waking up rested. He’s eating great and his energy seems much higher than it has been in awhile. So I imagine that although we caught it fairly early, the CMV might have been brewing for a bit.

We’re now in a holding pattern, on iv medication to treat the CMV, until we see his viral load start to drop. Once it starts trending downward, then we can switch to oral meds. And once we see his viral load continuing to drop, then they’ll feel safe discharging us. We still don’t know exactly when that will be. They only test his CMV viral load weekly, so it could be a bit still.

He has an abdominal ultrasound tomorrow, and they’ll be doing some routine Fontan-turned-transplanted patient liver scans, to see how long to takes for Fontan Associated Liver Disease to dissipate. And they’ll continue drawing copious amounts of blood for various labs. They’re regularly monitoring his CMV levels, his white blood cell count, his neutrophil count, his liver enzymes, and his immunosuppression levels among other things.

So for now we wait. The PT who worked with Bodie post-transplant stopped by today and gave Bodie some exercises he can start working on to keep his strength up. Bodie is starting hospital school tomorrow, where he’ll go for a few hours a day and someone other than me can yell at him to do his schoolwork. I am thrilled. He, not surprisingly, does not share my enthusiasm. But hopefully it will mean he will be less behind when he returns to the classroom once we get home. Please pray that goes smoothly.

Beyond that, he tries to beat the boredom by playing a lot (and I mean A LOT) of Pokémon. And building Legos.

I purchased a 1,600 piece set for him Saturday, thinking it would keep him occupied for a couple of days. It did not. He had it kicked out in a matter of hours. But man does it look cool!

We set up an Amazon wishlist yesterday with several more Lego sets for him to do, and almost everything on the list was already purchased – THANK YOU SO MUCH! He has already started receiving then – and built one today.

How cool is this camera? (This one was so generously provided by fellow theatre mom Katie and her sweet crew – maybe this will make Bodie hate musical theatre a tiny bit less? One can dare to dream).

I continue to attempt to work bedside, and my clients are being very understanding about my ever shifting schedule. Please pray their patience continues, and that we are able to get into a rhythm that will allow for me to get more work done while bedside.

Please continue to pray for Bodie – for his viral counts to come down, for him not to catch anything else while inpatient, and for resilience to hospital life, especially when it comes to schoolwork while inpatient!

The Amazon wishlist went quickly (thank you!!!), but if you’d still like to give, we’d love donations to our cota fund (right here on this website) to cover Bodie’s medical expenses or Grubhub/Postmates/Uber Eats giftcards (Bodie is a growing teenage boy and, not surprisingly, he’s not loving the hospital food. Ha. So meal delivery cards are awesome because then I can order him what he really wants and what he’ll eat!). (Those can all be sent to amykbennett@gmail.com)

More than anything, we covet your prayers!

Is there a specialist in the house?

Man, has this kid been put through the ringer in the past 48 hours.

Because CMV can affect so many organs, Bodie has been evaluated by Infectious Diseases, Infection Protocol, Gastroenterology, ENT and Ophthalmology, along with Hematology and, of course, Cardiology.

Through it all he’s been a trooper, even when the Ophthalmologist had to dilate his eyes and look at the back of his retinas – and the GI guys had to discuss his fecal matter in detail with him. (When they were here, they asked Bodie to look up the Bristol Stool Chart on his phone. Bodie replied that he would not because he did not want that in HIS search history! Don’t search for it on your device – unless you really happen to be fascinated with fecal matter. Just saying.)

He’s also had roughly his body weight drawn in labs and cultures. This morning, in true hospital phlebotomist style, the IV nurse rolled in early morning and turned on every single light in a 10 mile radius. I was starting to admonish her and ask her to turn them down please – until I looked over at what she was preparing.

And then I told her she could use every single light in the greater Bay Area if she needed for that draw.

Bodie, ever the trooper he is, barely woke up for the blood draw and went right back to sleep afterwards.

The big picture of where we’re at with Bodie is that (1) He has CMV and (2) He is severely neutropenic. The problem with that is the treatment for CMV can cause further neutropenia.

In rounds this morning, the attending asked the team why it was a problem to have both CMV and be neutropenic. I was quiet during the crickets that ensued until my ADHD got the better of me and I raised my hand and said “Oh, Oh, I know this one! Can I answer?!?” Everyone laughed and the attending remarked something about me having a PhD (for the record, it’s just a JD – but if you know JD’s, we’re very good at sounding a lot smarter than we are – they make sure to teach that in law school!). The team did figure it out without my help – but it was fun to live out my Grey’s Anatomy med student dream for a moment.

But I digress. Given the above, the team has 3 real objectives right now:

1. Treat the CMV. Bodie is currently receiving an IV medication. Once his viral load starts to decrease, we can then switch him to oral. Once they are satisfied his viral load is continuing to decrease on the oral medication, he should be ok to be discharged. But we have no idea how long that will take.
2. Ensure nothing other than CMV is going on. Hence the 9,999 vials of blood they took this morning. There are a lot of viruses that can look like CMV. We’re all pretty sure it’s just CMV, but they want to make sure there isn’t something else in addition to CMV that we need to be aware of and treating.
3. Bring Bodie’s white blood cell and neutrophil counts up. Both continue to be dangerously low, which means that, were he to get a fever, he could become septic within hours. He was evaluated by Hematology this afternoon, and the general feeling seems to be that the low WBC and neutrophils are caused by his immune suppression meds rather than an underlying condition. So they made adjustments to his immunosuppressants today (we switched out his Myfortic (Cellcept) for Everolimus (which will hopefully help him fight off the CMV more effectively, and should not have the GI side effects he has struggled with since transplant from the Cellcept), and went down on his Tacrolimus). Hopefully these two moves combined will get him to the sweet spot of providing adequate rejection protection while still allowing his body to fight off the CMV.

We don’t know how long it will take to accomplish these 3 tasks, and we covet your prayers that they are accomplished sooner than anticipated!

In the meantime, Bodie is doing well all things considered. Yesterday afternoon was rough, with a headache and multiple bouts of vomiting. But after a healthy dose of Zofran and a nap, he seemed to be past that. Since then, his spirits have been up and he’s been eating like crazy, which is great news!

Amidst the angst of hospital life, we were so blessed to receive a sweet basket from a fellow heart family here on the floor, whose son Camilo was a CHLA kiddo with Bodie and has now been waiting at Stanford for some time for his perfect heart. They gave us the sweetest basket to occupy our time:

We were shocked that, in the midst of their own long hospital stay, they thought to send us something! I mean, I already knew Sonia (Camilo’s mom) was amazing, but this was above and beyond and made us feel so very loved!

And Ramsey, one of Bodie’s best friend’s fathers, who works in San Francisco, came over tonight, brought us pizza and hung out with us for awhile. We are so grateful he takes time out of his busy schedule – and it absolutely made our day! Ramsey visited us often when Bodie was inpatient over the summer. We were talking tonight about how much Bodie had grown since transplant, and I think these pictures really show that – the picture on the left was the night before he was put on Ecmo back in June. The picture on the right is from tonight. It’s like his new heart gave his body permission to GROW!

And my dear friend Amanda reached out to me, out of the blue and asked if we needed some financial assistance right now. It was completely unexpected, and so very, very much appreciated! Given that this admission caught us off guard, finances are definitely tight right now, so it was such an answer to prayer to have her do that!

We likely won’t know more about concrete steps forward and how long the admission will be until we get further into next week and all of the labs and cultures come back. In the meantime, please keep praying for Bodie to remain strong and resilient! And for wisdom for his medical team. As one of the doctors said this morning “With transplant patients, you’re always trying to balance the risk of rejection vs infection. Right now, infection is winning. We need to swing the pendulum back the other way – but not so far that rejection ends up winning.”

So pray we find that sweet spot.

This feels familiar

After getting RSV last month, Bodie just hasn’t felt back to his usual self. We thought it was just the RSV taking him awhile to get over, but when new symptoms like extreme fatigue, stomach pain and night sweats started in the last few weeks, we suspected we were dealing with something else.

Unfortunately, our suspicions were correct.

Bodie has CMV (Cytomegalovirus).

On the list of worrisome things can happen post transplant, CMV is one of them.

CMV is a really common virus that most of us have been exposed to. It doesn’t cause issues for most people.

But for transplant recipients, it can cause a host of issues, including hepatitis, pneumonia, pancreatitis, colitis, meningitis, encephalitis, myocarditis, venous thrombosis, bacteremia – and rejection. Super fun list, right?

We’ve known from the start that Bodie was at a higher risk of developing CMV because his donor was CMV positive and Bodie was CMV negative. As a result, he was on an antiviral medication for the first 6 months post-transplant. When he passed that 6 month mark with no evidence of CMV, per Stanford’s usual protocol, that antiviral medication was discontinued.

So once his bloodwork confirmed CMV, his transplant team at Stanford wanted him brought inpatient to treat it. And they wanted him inpatient not at our local children’s hospital, but up at Stanford.

Bodie’s situation is extra complex because he is also currently severely neutropenic (his neutrophils, the very thing his body would need to fight off a virus like CMV, are dangerously low). Given that combo of really low neutrophils and having CMV, the team wanted to be able to watch him really closely while they treat it.

We found this all out at 6pm last night.

So Bodie and I did laundry and packed, and then made the 8 hour drive from San Diego to Stanford today. We got up here at 6:30 and Bodie was directly admitted to the cardiac floor. He’s all settled in and just waiting for the IV to be placed so they can start treating the CMV.

We don’t know the whole plan yet. A lot of it will depend on Bodie’s body and how well he responds to treatment. The team has told us to expect a 1-2 week stay, if all goes well. But, as always with heart kiddos, things can change at any time.

So we could really use prayers:

1. CMV Treatment: Pray that Bodie’s body responds quickly to the CMV treatment, and his CMV numbers start coming down.
2. Neutropenia resolution: Pray that the team can determine what is causing his neutropenia. He has been trending down for several months now. (It may just be caused by the CMV and RSV, but it could also be caused by one of his medications, in which case we may need to do a medication swap or titration.)
3. Symptoms: Pray that he feels better. Today, he felt great and it seems weird that he’s is in the hospital. But CMV is a weird virus in that symptoms come and go. Yesterday his stomach hurt all day and he had very little energy. So he’s very up and down. But please pray the treatment stops his symptoms in their tracks.
4. Isolation: Pray that he can be removed from isolation. Right now, Bodie is on isolation, so he cannot leave his room and practitioners have to mask and gown to come in. That means all the things I had planned to use to distract him from being in the hospital (going to hospital school, the teen playroom, Pokemon hunting throughout the hospital, etc.) are all on hold. He’s going to get very bored VERY FAST. Please pray they determine he’s not contagious so can be free to roam the hospital.
5. Emotional Resilience: I ask specifically for Bodie, but really we all need this. When we heard he was going to be admitted, Bodie was completely demoralized. He was crying. I was crying. It was super awesome. In the grand scheme of things, Bodie has done quite well post transplant. But we have to remember that he’s just a 15 year old boy. A kid who wants to hang out with his friends and go to school. (OK, he doesn’t “Want” to go to school, but it would be great to stop missing school so that he could spend his time just staying caught up instead of constantly trying to play catch up.) He’s just craving normalcy and right now it feels like that’s never going to come. PLEASE pray that his spirits lift.

Thank you and I’ll update once we know more and have more of a plan.

So this is 15.

Bodie turned 15 today.

14 and 1/2 years of living on hopes, dreams and prayers with a half a heart. And 8 months of living with a beautiful new heart, made possible by the generosity of someone we’ve never even met.

Gratitude doesn’t even begin to cover it.

In the past year, Bodie’s entire life changed. All of our lives changed.

And in the past eight months, Bodie’s life began in an entirely new way. We have officially landed squarely in teenage boyhood, complete with a deep voice, overnight growth (he’s now 5’8.5″, and Sierra, Bodie and I can all technically share shoes now!), hoodies, crocs, and a gaming addiction.

And I wouldn’t have it any other way.

Last night, we went out to dinner as a family to celebrate, and Sierra gave him the sweetest Build a Bear she had picked out for him.

Today, his closest friends came over to celebrate Bodie. And it’s been 5 hours (and counting!) of boys running around playing Hide and Seek, multiple games of Poker and pool, hanging out in the jacuzzi, eating us out of house and home and fangirling over Bodie’s cake.

(This was a proud mom moment, I’m not gonna lie).

For the record, this was the cake:

Bodie has been so abundantly blessed by the nicest group of friends. He knows them all from school and youth group. I am constantly bowled over by how kind and genuine these boys are. I don’t know how Bodie got so lucky, but I feel so profoundly grateful that in this one part of his life, he didn’t have to struggle.

I’ve said this before, but it bears repeating…when you have a medically fragile child, you don’t dream big dreams. You don’t let yourself imagine too far ahead in the future. You just can’t. You learn to live in the moment for as long as you get that moment. So each and every birthday truly feels like a gift. And this birthday was no exception. If you had asked me to imagine Bodie’s 15th birthday, I couldn’t have. I didn’t dare to.

Suffice it to say, it was far better than anything I could have dreamed up.

Happy Birthday, dude.

We love you to the moon and back.

A million, billion, quadrillion times.

15 years down.

You’re just getting started and we can’t wait to see what’s in store.