Hope for Baby Bennett

The sweetness of 16

2026-02-16T20:20:00.000-08:00

Today, this most incredible kiddo turned 16.

It’s so weird raising a medically fragile child. When their very life is measured in statistical odds long before they’re born, milestones just hit differently.

From the time we received Bodie’s diagnosis when I was 17 weeks pregnant, we have constantly been reminded that there are no guarantees with Bodie, and that we just have to embrace each moment as it comes. So when you’re parenting under that paradigm, you don’t look toward the future. When you’re sitting bedside with a newborn on a ventilator recovering from open heart surgery, you don’t dare to dream of him being a walking and talking toddler, let alone a robust 16-year old boy who is taller than you. You just don’t even let yourself go there. A protective measure, I suppose, And that protection is compounded even more when you face a heart transplant.

So to say his 16th birthday was a huge cause for celebration was a big understatement! He may have turned 16 today, but we’ve been celebrating for weeks,

Popo Alan and Grandma Jan came to town last weekend all the way from Reno to give Bodie a very special birthday gift and help him celebrate (and yes, at almost 5’11”, he’s taller than 3 of his 4 grandparents – and rapidly approaching the last!).

Then Popo Bill and Gigi Nancy came on Saturday to celebrate with Bodie

And compared broken wrists…

Bodie broke his wrist in December when he fell off a ladder putting up Christmas lights; and got his cast off in January. Gigi broke the same wrist in January and is recovering from surgery. Bodie put his cast back on temporarily so they could compare!

Today, we took Bodie’s group of friends out to eat at Buca di Peppo’s to celebrate Bodie.

We are so incredibly grateful for Bodie’s group of friends. I know from my friends in the heart community that it’s rare for kids who’ve been through what Bodie has to have such a tight knit group of friends. There’s a lot of reasons why, but the constant hospital stays and interventions can be so isolating, and the differences from their peers can be overwhelming. The barriers can be hard to overcome. But this group of boys has been so amazing for Bodie. They accept him unconditionally and treat him just like a regular kid, not like he’s any different. In many ways, these boys have been as big a miracle for Bodie as all of his surgeries have been.

I don’t know how we got so lucky to have them as Bodie’s friends. I just know we are lucky.

BODIE.

We love you buddy.

We are so so proud of you, of all that you bring to our lives and this world.

Did you know that this is your Golden Birthday? You’re turning 16 on February 16th. That’s really special. A perfect time to reflect on how special you are and all the great things you’re going to do with your life.

You, my son, are going to make the world a better place.

I know it’s sometimes hard to see that, when you’ve spent the better part of 16 years just fighting to be alive. It’s hard to see beyond that, to see what plans God has for you. It’s hard to make the mental shift from “I’m so tired of having to fight through all the bad stuff” to “How do we make the bad stuff have meaning?” and “How does my story give someone else hope?” But everything you’ve been through, it’s all been a part of God’s plan. And His plan to use all of it for good is there. l promise. We just need to be looking for it.

Happy 16th Birthday, Bodie.

That's my Girl

2025-10-13T17:05:00.000-07:00

While Bodie has been settling into a little bit of stability, health wise, and focusing on growing (pretty sure he just passed me up, but we’re not talking about that right now), I took a much needed weekend away for a cardiac networking conference and to see my girl!!!

The semi-annual Single Ventricle Outcomes NEtwork (SV-ONE) Learning Session was in Indianapolis this past weekend. (SV-ONE is a learning health network dedicated to transforming outcomes for individuals living with single ventricle heart disease (what Bodie was born with) across the lifespan. Through my work with Sisters by Heart, I have been involved with SV-ONE for some time now. It is an incredible organization and it’s always such a privilege to work alongside such dedicated practitioners, adult survivors and caregivers to make true change in the way individuals with single ventricle hearts live and thrive!)

Since I was so close to Sierra, I had her come up and join me for the conference (being pre-nursing, I thought she’d find it interesting), and then I went down and spent a few days in Bloomington with her.

What a joy it was to see her in her element!

I got to meet her friends, fill their (tiny) dorm fridge with groceries, fill their bellies with real food (apparently dorm food is getting old) and just give them some mama love.

I loved every second of seeing my girl! She has already grown so much and is absolutely flourishing at Indiana University. I could not be more proud of her. We suspected she would do well, but she has just blown me away! She is loving college life, focusing on her studies and really making Bloomington her home. And she has done it all while adjusting to a myriad of health issues, including an official diagnosis of both Hypermobile Ehlers-Danlos Sydrome (HEDS) and Mast Cell Activation Syndrome (MCAS), both of which have had some pretty nasty flare-ups since arriving in Bloomington. I am amazed that she’s able to concentrate on her studies while dealing with her symptoms!

When I first saw her, ALL that she wanted was Cheesecake Factory. Despite my argument that it was the LAST thing I needed at 9pm at night, I relented, Because…well…my girl wanted it!

In Bloomington, I took Sierra and her roommate to an IU Hockey game and it was SO FUN! (and just a little bit violent – ha!)

She walked me through campus, showing me the routes she takes to her classes. I was a business major, so didn’t spend much time over on the side of campus where her classes are. So I got to see parts of campus I hadn’t seen before (as a former tour guide, that says a lot)!

How gorgeous is this???

This is my absolute favorite time of year in Bloomington!

This girl is definitely her father’s child. All about the BBQ.

We discovered this place when we dropped her off for school and she begged to go back.

She introduced me to pretty much the best donuts I’ve ever had. AHMAZING!!!

A run to the grocery store with her roommate and another bestie. (Have I mentioned how fantastic her friends are??? She has sought out and found the best set of friends – they are all kind, driven, respectful girls who are GOING PLACES, let me tell you!)

I loved learning about the backgrounds of her friends, what they were studying, their families, etc. One of my favorite things was listening to Sierra describe her grandma (my mom) to her friends. She said “Did you guys read the Fancy Nancy books as a kid? Well, she’s like Fancy Nancy if Fancy Nancy were a grandma!!!!” Honestly, it’s the best description I’ve ever heard of my mom! She nailed it! If you know my mom, you’ll totally get it.

It was such a privilege to get a peak into her life, and it is not lost on me how lucky I am that she wants to bring me into her life at college!

I’m waiting at the airport now for the trek back home cross country. I’m not gonna lie – it was hard to leave my girl again. SO HARD. But it was so worth it to get to see her and how well she’s doing!

I grabbed as many hugs and kisses as she would allow, to fill my tank until I get to see her again – at Thanksgiving!!! (I may or may not be counting down the days!) Praying for a smooth rest of the semester for my girl!

The Little Engine that could…until it couldn’t

2025-09-07T17:02:00.000-07:00

Bodie’s appointments at Stanford went GREAT! As I mentioned, they can’t see everything with a CT scan that a cath will show, but between the blood work and what they COULD see on the CT scan, they’re very happy with how Bodie looks. As long as continues to look good clinically from the outside, we don’t have to go back until winter break for a cath and biopsy!

I should have known it was going to be a good trip when we got off the airplane in San Francisco and Bodie was moving so quickly I could barely keep up with him through the airport. I was reminded of the last time we flew into SFO and we ended up driving home 3 months later. I had to stop to take a comparison picture and was blown away just looking at the picture of him from last year.

I don’t remember him looking that sick.

Dusk doesn’t remember him looking that sick.

Our friends remember seeing him he week before and he looked fine.

But pictures don’t lie.

His decompensation happened so quickly – in a matter of days.

I remember once hearing that the problem with kids with heart defects is that they’re really good at compensating – until they can’t anymore. And they go downhill really fast when that happens. And that clearly was what happened to Bodie last June.

After all of his appointments, we hit up some of our favorite spots, including this random humane society park with this huge heart sculpture.

We have stopped there every time we’ve gone up!

We also went to this hill, which doesn’t look big.

But it is VERY STEEP. Last summer, during transplant recovery, I worked really hard to convince Bodie to try to walk up it once. He grumbled the whole way. But two days ago, he and I walked up it, and then down it, and then he asked me if we could run up it. So we did – and you guys, I could not even keep up with him!

It’s incredible to see the growth he’s had in the last year, but really in the past few months. It’s as though his body is finally settling into life with this new heart.

We still have a big open question of treatment for his platelets. His platelets on Thursday were actually 150K, which is the low end of NORMAL! So he is definitely responding to the injections. I think our next step is getting him to some degree of consistency so we know how much medication he actually needs, and then we can discuss trying to switch to the oral medication. Switching him to the oral medication will mean stopping the statin he’s on, and not every patient responds to the same way to the oral medication – and it comes with lots of dietary restrictions. So lots of hurdles to get through first. So for now, we’re still looking at weekly visits to Radys for lab draws and injections. But at least his platelets are improving, which means we’re in much better shape than a few months ago!

The most meaningful part of our trip by far was the opportunity Bodie and I had to go to the Pathology department and see Bodie’s old heart!

LPCH is one of the few hospitals that will allow transplant patients the opportunity to view their old organ, hold it, and ask questions. The doctor who led our session was incredible and had studied up on single ventricle hearts, so she was able to really explain to us all the ways Bodie’s heart was different than the typical heart we got to look at alongside it.

For me, it was such a moment of gratitude and wonder, to see that heart and how hard it had worked. The scars all over it were evidence of just how much has to be done to these single ventricle hearts to get them to function. For Bodie, I think it was very cathartic, not just to say goodbye to his heart, but to realize exactly how bad his heart was. It wasn’t enlarged as a heart in end stage heart failure would be. But as Bodie said, it looked “well seasoned” with so many scars. It truly looked like someone had MacGyvered it to get it to work, like they just grabbed whatever they had on hand at the time. It was kind of overwhelming to see it and really take it in. But overwhelming in a wonderful way.

If you’re not squeamish and would like to see a little of what we experienced (Bodie and I were there in person and Dusk and Sierra were able to Facetime in), check out the video I put together:

Stanford is calling…and we must go

2025-09-04T17:00:00.000-07:00

One thing we have learned unequivocally in Bodie’s heart journey is that when the hospital calls, we go…we drop everything and go…

Bodie’s team at Stanford has been nervously watching his weekly labs taken in San Diego, waiting to see if his platelets would stabilize so that we could move forward with his annual monitoring (which is now almost 3 months overdue). Unfortunately, we seem to have found the one thing in the world more stubborn than our son – his platelets!

His platelets ARE in a better range, but still bouncing around like they’re on the world’s most fun roller coaster. In the last 5 draws, they’ve been 27K, 70K, 23K, 100K and 79K. As a reminder, he needs to consistently be above 50K to even consider doing a cath and biopsy.

Because we’re already 3 months past when we were supposed to do these procedures, Bodie’s team is getting understandably nervous about wanting to see what’s going on inside his heart.

It’s not safe to do a cath and biopsy (which is more or less the gold standard of transplant monitoring). But his team doesn’t want to wait any longer to see what’s going on. So they’ve put together a less invasive monitoring plan, which includes a CT scan, Allosure Heart mapping and bloodwork, along with a multi-disciplinary clinic visit, EKG and echocardiogram.

All of this is designed to get us as comfortable we can safely get under our current circumstances. with Bodie’s heart, with a plan to follow up with a cath once we can safely do so. There are things we WILL NOT be able to do with a CT scan, like getting a good look at his coronary arteries and being able to biopsy his heart tissue.

It’s not perfect.

But it’s what we got.

So Bodie and I are headed up to Palo Alto for a couple of days of testing and appointments.

Please keep Bodie in your prayers:

Pray for his heart. Please pray that they see NO signs of rejection with this special heart. Bodie looks SO good from the outside these days – please pray that he looks as good on the inside as he does on the outside.
Pray for a clear path ahead. Given Bodie’s platelet situation, we’ve sort of been in limbo, treating the platelets but still not having a clear indicator (1) what is actually causing the issue, (2) what our long term treatment plan will be, and (3) how soon we can do a full cath and biopsy. Please pray we get more clear answers over the next few days.
Pray for Bodie’s spirit. He’s been pretty bummed to be back at school and already facing missing classes for medical appointments and procedures. (As a point of clarification, he is NOT sad about missing school – this kid does not like school! – he’s sad about constantly being behind in his schoolwork because of it.) Last year was a VERY hard fought battle for him, and left him discouraged toward school. Please pray for him to focus on the positives and how much better he feels.
Pray for smoother sailing. Bodie’s had a bit of a rough go of things in the first year post transplant. We covet smoother days ahead with fewer procedures and appointments, so that he can get to what 15 year old boys love to do – game and hang out with his friends!

Thanks for all of your support and prayers!a

The Hard Launch

2025-08-21T16:54:00.000-07:00

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

2025-08-17T16:54:00.000-07:00

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!

Lessons in Patience

2025-06-17T14:06:00.000-07:00

Our life has been pretty chaotic as of late. In the past 3 weeks Bodie had an emergent unplanned hospital admission, got out in time to take his finals, fought with me for 3 days straight about taking said finals, Sierra graduated, we had a family graduation lunch, we hosted a graduation party at our house for 50 people, Sierra got in a bad accident on the way to graduation and totaled Dusk’s car (no one was seriously hurt, thank God, but we’ve been dealing with insurance and the rental car company), Bodie was readmitted to the hospital and I threw my back out…needless to say, it’s been a lot.

I have lots to update on (including Sierra’s graduation!), but that will need to be a post for another day. So many of you have been asking me how Bodie is, so I wanted to update. It’s been a lot to process, which is why I haven’t been updating on the blog. (Also, due to the recent events, my life has been too crazy to find time to sit down and blog. Ha). But here goes…

As I mentioned previously, Bodie has been diagnosed with ITP (Immune Thrombocytopenic Purpura) a rare autoimmune disorder where the body’s immune system mistakenly attacks and destroys platelets, the blood cells that help with clotting. As a result, he could start internally bleeding at any time, and doesn’t clot well when he injures himself.

ITP is an extremely frustrating condition to treat, because every patient’s cause is different and treatment plan is different. The treatment for ITP essentially involves going through the protocol of possible treatments from least invasive to most invasive, until you land on the one that works for your child.

It is, unfortunately, not a condition that is diagnosed and resolved within a week or two.

So we have to be patient while they work through the possible treatment plans, to find the one that works for Bodie.

Treatment 1. Platelet Transfusion. When a patient presents with ITP, the least invasive line of treatment is a platelet transfusion. It’s exactly what is sounds like: it’s just like a blood transfusion, except it’s platelets instead. In Bodie’s case, his platelet antibodies are so high that this treatment was wildly unsuccessful. His antibodies attack the platelets as soon as they’re in his system. In fact, his platelets actually decreased after his first platelet transfusion. They increased slightly when they used a platelet batch actually matched to his antibodies. Both of those transfusions were done during his first hospital admission in late May/early June. They didn’t even attempt a platelet transfusion during his admission last week.

Treatment 2. Steroids. Steroids tend to be a first line treatment when the body has an overactive immune response. Bodie has had luck with Decadron (a corticosteroid medication with the active ingredient dexamethasone), as it both treats ITP and helps modulate side effects of IVIG. So he’s done 4 day courses both times he’s been inpatient recently. But to do it at full treatment dosing would be a higher dose for a longer period. Dusk is extremely steroid sensitive – 1 week on Prednisone caused Avascular Bilateral Hip Necrosis, and he had to have both of his hips replaced at 37 years old. Bodie does not appear to have a steroid sensitivity, but we didn’t discover Dusk’s until he was in his 30s. So we’re always very conservative with steroid use with Bodie.

Treatment 3. Intravenous immunoglobulin (IVIG). is a treatment where a concentrated dose of antibodies (immunoglobulins) from donated blood is administered intravenously (through a vein). IVIG helps to boost or modulate the immune system, providing antibodies to fight infections or regulate overactive immune responses (the latter is essentially what is happening with Bodie). IVIG is also used to treat Donor Specific Antibody rejection, which Bodie had pop up on a blood test a few weeks after his transplant. So he had several rounds of successful IVIG treatments last summer at Stanford. During his first admission in late May/early June, he seemed to be the most responsive to IVIG. They did 2 back to back IVIG treatments during that admission, and another 2 back to back treatments during last week’s admission. It does seem to give him a temporary boost, but definitely does not give him enough to last. (When we left the hospital after his first admission, his platelets had jumped up to 43,000; 3 days later, they were back down to 7,000).

Treatment 4. Nplate Injections. Nplate (romiplostim) is a prescription medication administered via subcutaneous injection into the body to stimulate platelet production. The goal is to stimulate the body to produce enough platelets that they overwhelm the overactive antibodies. Bodie had his first injection last week. The injections are done on a weekly basis in the Hematology clinic in the hospital. Full dosage is 10 units. They can start patients anywhere between 1 and 3 units. They started Bodie at 3 units, and will go up 1 unit a week until he is at full dosing. Unfortunately, they cannot be administered at home or at a satellite facility, because each week his platelets will need to be checked first, and then the injection will be titrated specifically to his platelet level. So we’ll be driving an hour to the hospital for these injections for the foreseeable future. The tough part about this one is that we won’t know for awhile whether or not it is working. Some kids show a response in as little as 3 or 4 treatments, but most have to get to full dosing to really see an effect. (Side note – there is an oral medication that does the same thing, but it interferes with his Statin medication (transplant patients are on statins as they seem to be the best way to prevent Coronary Artery Disease, which is the biggest reason for re-transplant), so the oral medication is off the table for Bodie, unfortunately.)

Treatment 5. Bone Marrow Biopsy. This is really more of a diagnosis tool than a treatment, but I put it on the list as it’s the order of the protocol. If the Nplate injections do not prove successful, they’ll likely want to look at his bone barrow to get a better look at what exactly is going on to ascertain which treatment might make the most sense.

Treatment 6. Change immunosuppressant medications. If the bone marrow biopsy comes back normal, we would move on to looking at which if his medications could potentially be causing Bodie’s ITP. The challenge with Bodie is that any of the medications he is on – Tacrolimus, Everolimus and Valganciclovir – all could potentially cause ITP. Tacro is the most likely, but either of the other two could cause it as well. Because the Valganciclovir is actually an antiviral, used to treat/prevent CMV and he’s had several negative CMV tests at this point, we are going to trial off of that one this week. But the Tacro and Evero are here to stay unless or until we hit this treatment step. Changing up immunosuppresants is not for the faint of heart, and requires a lot of very careful slow titration up and down of medications, so would likely need to be done inpatient at Stanford.

So where does that leave us?

In a lovely holding pattern.

We’re currently on Treatment 4, the Nplate injections. And we might not know for a couple of months whether or not it’s working.

So for now, we see the Hematologist weekly where they check his platelets and give him the injection.

And we make sure he doesn’t engage in dangerous (you know, normal 15 year old boy stuff) behavior. No biking, skateboarding, contact sports, etc. For once, I’m glad he’s a gamer and not an athlete!

And we watch and wait for him to bleed.

Because he will.

When he was discharged from the hospital last Friday, his platelets were at 10,000. Again, nowhere near the normal range of 140,000 – 440,000. But as long as he’s not “actively bleeding,” we can stay home.

When (and I say if, not when, because we know he will) he starts to bleed, it’s likely be in the form of a nosebleed, or mouth bleeds, or blood in his stool or urine. And when that happens, we call his Hematology team. And they decide whether we’re close enough to his next clinic appointment to stay home. Or whether we need to come into clinic for a 6 hour IVIG treatment. Or whether we need to be admitted for treatment.

Meanwhile, with platelets hovering in the single digits, he’s not safe to make long road trips (if we were in a car accident, the consequences could be devastating) or to fly (if he were to bleed in the air we would have limited options to treat it).

So his annual biopsy and cath at Stanford (previously scheduled for tomorrow) have been postponed, along with his follow up appointment with his ENT and his viewing of his old heart with the pathology team. And our planned visit to Alcatraz. He’s not safe to do the procedure right now, let alone to travel there. We don’t know yet when they’ll be rescheduled.

And our trip to Tahoe in two weeks will likely also be postponed. We do pretty low key stuff while we’re there, but it’s the getting him there that wouldn’t be safe.

Needless to say, we have a pretty sad boy.

He says he’s “going to Tahoe anyway. The doctors can suck it up.”

While I appreciate his tenacity, unfortunately, it doesn’t quite work that way.

So we covet your prayers.

It is not out of the question that the ITP could spontaneously resolve – completely unlikely, but God has done the ridiculously unlikely with Bodie before and he can do it again. So please pray for that miracle!
Please pray that Bodie’s body responds far better than expected to the Nplate injections, and he’s in a safe space to travel soon!
We have been abundantly blessed that we have found an incredible Hematologist at Rady’s who works really well with our Stanford transplant team! She is so smart and works so collaboratively. Praise God for that! Please pray they continue to work well together to figure the cause of Bodie’s ITP out more quickly than anticipated!
Please pray that we can switch our Tahoe week for a week later in the summer. When we go, we’re in a timeshare, so can only go if we can swap it for a week later in the summer. It’s hard to plan since we don’t yet when he’ll be safe enough to go. Right now it’s not looking too promising. Please pray something magically opens up when we need it.
Please pray for my spirit. I’m feeling pretty burnt out and rundown right now. I’m a planner and we had a heavily planned summer that has now all gone up in smoke. I’m trying desperately to keep up with my client workload amidst all of this, but it’s hard working in the hospital, for a variety of reasons. So I feel like I’m just constantly running behind and not able to do anything very well right now. I just need some peace, honestly.
Please pray especially for Bodie’s spirits. He missed last summer because of transplant recovery and he’s had a rough year academically. All year, we’ve been talking about how we were going to make up for all of it at Tahoe this summer. We so want him to have a FUN summer where he can get some of that time back!

And one final note – if you’re still reading this! You have all been so generous in your donations – I can’t believe we’ve made it all the way to $79,109!!! I cannot tell you how much that has helped offset our medical bills, hospital stays, travel costs and Bodie’s prescriptions! You’d be shocked at how quickly all of this adds up! If you’re still being led to give, please do so! We’d love to hit $100K raised before our 1 year anniversary, which is almost here! We’re only $21K away, so we could totally do it! Gifts are tax deductible to you and will be available for Bodie’s transplant related expenses for life! Thank you!

Learning a new language

2025-06-01T18:55:00.000-07:00

So the last couple of days have been a crash course in Biology, Immunology and platelet development and consumption. To be honest, I’m still not sure I completely understand it.

Wednesday night, Bodie’s platelets were at 7,000.

He was given a platelet transfusion and they dropped to 6,000.

By Thursday morning, they had dropped to 4,000.

Late Friday afternoon into Saturday morning, he was given a 12 hour IVIG infusion coupled with steroids. By Saturday morning, his platelets had risen to 10,000! We were so excited that at least they weren’t free falling anymore and were hopeful we were onto a solution.

But by yesterday afternoon, they had dropped to 8,000.

So this afternoon, we did a second platelet transfusion, this one specifically selected to not only match Bodie’s blood type, but also to not conflict with any of his known antibodies.

After that transfusion, his platelets rose to 15,000.

We were happy they rose, because that clearly meant something we’re doing is working. However, it was not the robust reaction the hematologist was looking for, leading him to solidify his diagnosis of ITP, very likely caused by his underlying antibodies.

Did you follow all of that? I know, it’s confusing.

If you’re a visual learner, like me, here’s a handy little chart.

(As an aside, one of my favorite quotes is by Olaf in Frozen 2, when he describes a game they’re playing by saying “We’re calling this ‘controlling what you can when things feel out of control.'” I’m pretty sure that’s what charts are for me – a way to control something, anything, when things feel out of control!)

In any case, the Hematologist talked to our team at Stanford today. Because Bodie did show a small response to the first dose of IVIG, they’ve decided a second course is a good idea. So they just started a second course of IVIG.

We’ve been relatively lucky in that Bodie hasn’t had bad reactions with IVIG as long as it’s been paired with the steroid. But he’s also never had 2 IVIG treatments back to back. IVIG definitely has the potential to cause some pretty bad side effects, especially when given so quickly after a previous treatment. It’s a lot on his body.

Please pray Bodie’s body responds positively to this IVIG treatment – that his platelets increase significantly, and that he has no side effects!!!

Our hope is that this will be enough to get Bodie over the hump to a more acceptable platelet level, so that we can get discharged and treat his ITP outpatient. A lot of hurdles to cross to get that to happen, but we have a lot riding on this week:

(Bodie hard at work on his finals study guides yesterday.)

FINALS: Bodie has all of his finals this Tuesday, Wednesday and Thursday, and Bodie has worked SO HARD to try to get caught up in school and we’d hate for that hard work to be in vain if he can’t take his finals. Because of all of his absences, this has been an extraordinarily challenging year for Bodie academically and he’s been tempted so many times to just give up. (OK, maybe he did give up more than once, but luckily Dusk and I were there to keep pushing/carrying him Ha). But we just want him to end the year on a positive note and recognize his hard work has paid off! Please pray that he’ll be discharged in time to take his finals in person, or that the school will work with us to ensure he can complete his finals on time. The kids’ school has gone above and beyond up until now in working with us to ensure he succeeds academically, so we have no reason to think it will be different this time – but I’d be lying if I didn’t say I’m worried about it.
GRADUATION: Sierra graduates from high school this Thursday! This week should be a week of fun and excitement and all about our girl! It’s hard for that to happen when her brother is in the hospital. We have friends and family coming to town to celebrate her. Please pray Bodie and I can get out of the hospital in time to enjoy all the fun and show her how proud we are of her!

I’ll keep you appraised as we know more. Thank you, as always, for your prayers and financial support – we couldn’t do it without all of you!!!!

Ugh…platelets are SO last season…

2025-05-30T11:00:00.000-07:00

After getting settled into our room on the Hemoc floor late Wednesday night, they checked Bodie’s platelets again (they had dropped to 7,000) and did a platelet infusion. An hour after the infusion, they checked his platelets again…and they had dropped to 6,000! They continued their race to the bottom yesterday, sitting around 4,000 when they last checked.

As a reminder, “normal” platelet range is 140,000 – 400,000.

So there is no question that his body is consuming his platelets far faster than he can produce them.

(As an aside, doesn’t “consuming” sound much nicer than “destroying”? It’s the term the doctor used yesterday and I’ve decided to use that because I like it better.)

But I digress.

We have a problem. His body cannot hold onto platelets.

Yesterday, they did an abdominal ultrasound, so were thankfully able to rule out any abnormalities in his spleen or liver that might be holding onto platelets.

And Hematology down here had lots and lots (and lots and lots) of discussions with his transplant team up at Stanford. At one point, the director of the blood bank down here was even on the phone with the director of their program up there!

So we’re looking at a diagnosis of ITP (Immune Thrombocytopenia), when the body’s immune system mistakenly attacks and destroys its own platelets, leading to a low platelet count.

The two most likely causes are antibody or medication induced. Because Bodie is on a very nuanced cocktail of meds and truly needs them all to carefully balance rejection and immune suppression, we don’t want to go down the road of switching up meds unless we really have to.

So the plan is to treat as though this is antibody induced and if that doesn’t work, go down the road of medication induced. Antibody induced ITP is treated with a combination of steroids and IVIG, both of which he’s had in the past and has tolerated well.

When they told me the plan was to do IVIG, I mentioned that Bodie tended to get really bad “IVIG Hangovers” and we had used Dexamethasone in the days surrounding the treatment to help with that in the past. So if they were going to do IVIG, we really needed to couple it with Dexamethasone to reduce his side effects. The doctor got excited and said that Dexamethasone is actually one of their first line treatments for ITP! So, Bodie will essentially be getting 2 ITP treatments in one!

That said, he was given one dose of Dexamethasone last night, and they will be giving him his second dose of it along with starting a 12 hour IVIG infusion shortly. Then, we will check platelets again tomorrow morning. If the ITP is caused by antibodies, we should see his platelets numbers start to increase by tomorrow morning. We don’t expect them to jump back to normal levels, but we hope to see them starting to trend upwards, rather than continuing the downward freefall.

If his platelets continue to drop, then we will assume it is medication related, and will start to untangle that very carefully tied tied up knot. Looking at the below chart, I am hopeful that this was not medication induced, but instead just a result of back to back viruses.

Indulge me in a quick biology lesson for just a moment.

Bodie has traditionally had very high antibodies. We were exceptionally lucky that they were not evident at the time of transplant, and didn’t prevent his transplant. Subsequent to transplant, he developed quite a few antibodies. However, at this stage in the transplant journey (already having an organ rather than trying to cast as wide a net as possible to find compatible hearts), general antibodies are not as concerning. From a transplant perspective, we are only concerned with Donor Specific Antibodies, meaning antibodies that would seek out and damage his new heart tissue.

However, sometimes, even those non DSA’s can still cause issues. In Bodie’s case, his back to back viruses may have triggered those antibodies to wake up and attack his platelets. Once they’re attached to those platelets, when the platelets get to the spleen, the spleen only sees the antibodies, and gets rid of them, along with the platelets they hitched a ride on. So the hope is that the combination of IVIG and Dexamethasone will quiet those antibodies back down so that they stop attacking his platelets.

So we need lots of prayers for this to work, and to work quickly!

In the meantime, Bodie is playing lots of Pokemon and trying to finish his study guides to be prepared for his finals next week.

Sierra came to visit last night, brought us cupcakes from decision day at her school, a Lego set for Bodie and some extra clothes for us. She was a breath of fresh air!

Dusk will be coming down tonight with extra things from home we forgot to bring. And then we just wait, hope the treatment works and hope we aren’t here too much longer. Please keep us in your prayers!

Well, this wasn’t on my 2025 Bingo card…

2025-05-28T21:36:00.000-07:00

After recovering from CMV and returning to school in March, Bodie has thankfully had a fairly uneventful period of growth and rest…until this past week, when his weekly labs showed a marked decrease in his platelets, prompting his transplant team to insist that we re-engage with the Hematology team down here in San Diego even though he felt fine. And then this week, when his platelets just tanked, and he ended up becoming symptomatic, leaving school with nausea and vomiting. And so we now find ourselves in the Emergency Department at Rady Children’s awaiting admission to the hospital.

What we know: Bodie’s labs last week showed a critically low platelet level. For frame of reference, a “normal” platelet range is 140,000 – 400,000. After slowly trending down the past few months, Bodie’s dropped to 39,000 last week. They dropped even further yesterday, down to 9,000.

As a result of his critically low platelet levels, Bodie has developed petechiae (tiny, flat, red or purple spots on the skin caused by minor bleeding under the skin) on his arms, legs and trunk. You’ve probably seen (or had) petechiae before as a result of illness or trauma to a body part. In Bodie’s case, his platelets are not clotting his blood properly, so he’s experiencing bleeding into his tissues. It’s pretty gnarly looking (the small clusters of spots aren’t too noticeable unless you’re looking for them, but the streaks on his legs, back and upper arms look like a bad case of road rash, except that they’re completely under the skin). The good news is that they’re not painful at all, and he doesn’t really notice them unless we point them out.

You can see he spots on his calf and the streaks on his back in the pictures below.

Along with petechiae, most patients with platelet levels this low experience bleeding in their gums when they brush their teeth and bloody noses, along with being at risk for head and GI bleeds. Luckily, Bodie hadn’t had any other symptoms. Until today after lunch, when he emailed from school letting me know that he felt nauseas and had a headache. By the time I got to school, he had thrown up 4 times. Poor guy. After resting at home, he felt a lot better – and thankfully hasn’t had any nausea since. But given his critically low platelet levels coupled with the vomiting and headache, his team wanted him seen at the ER. A CT scan ruled out a head bleed, thankfully. But both his Stanford Transplant and Rady’s Hematology team are in agreement that they want him admitted until he’s not so critical.

What we don’t know: We don’t know yet why his body is attacking and destroying his platelets, but that appears to be what’s happening. It’s not uncommon to have this happen with organ transplant recipients and it can happen for any number of reasons, including a reaction to viral infections, medications, or damage to the bone marrow itself. We will be working with hematology to try to determine which camp Bodie falls into so we know how best to treat it.

Where do we go from here: He is being admitted to the hospital tonight, under the care of the Hematology/Oncology team. They will run a repeat CBC to check his platelets again, and then do a platelet infusion. (On a side note, I donated blood and platelets for years, so it’s really coming full circle to me to be on the receiving end of those critical donations.) The platelet infusion should bring his levels back up and help him feel better as well. But because we don’t know what’s causing his levels to drop, his body is likely to attack those new platelets and destroy them as well. So they may be coupling the platelet infusion with an IVIG infusion. And they’re planning to run more tests to try to get to the bottom of why his platelets dropped so significantly so quickly.

How you can help: Please pray!

Pray for Bodie’s body, that it recovers quickly and we see his platelet levels increase, with no side effects from any of the treatments.

Pray for his medical practitioners, for wisdom to quickly see what the problem is and treat it effectively.

Pray that this is a short admission! This is Bodie’s last week of classes, and then he has finals next week. He has worked so hard to get caught up in all of his classes, and we’d really love for him to be able to finish his freshman year on time! And Sierra graduates next week – we have big plans for celebrating next week, with lots of family and friends in town to celebrate our special girl. We need to be out of the hospital to do that!

We’ll keep you posted as we learn more!

Life on the Struggle Bus

2025-03-23T22:26:00.000-07:00

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...

2025-03-03T21:48:00.000-08:00

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?

2025-03-01T21:40:00.000-08:00

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:

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.
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.
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

2025-02-28T12:35:00.000-08:00

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:

CMV Treatment: Pray that Bodie’s body responds quickly to the CMV treatment, and his CMV numbers start coming down.
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.)
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.
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.
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.

2025-02-16T20:58:00.000-08:00

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.

6 month tune-up

2024-12-16T21:59:00.000-08:00

While Bodie's sister and his classmates are studying hard for finals and getting ready for Christmas this week, Bodie had to take his finals a week early so that he and I could venture up to Stanford.

This week includes a clinic visit with echo and blood draw, a spine x-ray, a cardiac catheterization and biopsy, and a vocal cord surgery.

(But before we get started, can I just point out how much this kid has grown?!? He's sososoclose to 5'8"! He's 5'7.913" - this heart has been so good for him!)

He had his clinic visit this morning and everyone was really happy with how he looked. His labs and echo all look great - praise God! We need to get a spine x-ray because they're finding spinal fractures on a percentage of their transplant patients (I can't remember the percentage - I want to say 20-30%, but it might not have been that high). So they are now doing spinal x-rays at 6 months and again at a year with their transplant patients to catch anything that might be happening there. If they see anything, cardiology will refer us to Endocrine to manage that.

He just finished up in the cath lab with his planned 6 month cardiac catheterization and right heart biopsy. Everything continues to look pretty good from the outside, but transplanted hearts can be tricky and patients can be in rejection without even knowing it. So Stanford is very aggressive with monitoring their transplant patients, especially in the first 6 months. When one of the nurses asked if this was Bodie's first cath since transplant, he and I both laughed. This is probably Bodie's 5th or 6th cath since transplant (not to mention the 8 or 9 caths he underwent with his old heart). Needless to say, it's not our first rodeo (or last).

The patient before us ran over, so Bodie's procedure started late. Needless to say, he was more than a bit hangry and chomping at the bit to get things going. He and I had some good laughs this morning over the super stylish hospital gowns.

Once they put the Versed in his iv, he handed me the phone and started laughing.

(It's hard to tell here, but he was totally cracking up and being silly.)

He couldn't believe how fast it hit. I think he was asleep before they had him out of the room. Ha.

I just received a call from the nurse that they're all done, he did great and his numbers all looks good! Praise God! I haven't seen him yet, but will soon. Please pray the full results (including the rejection numbers) also look good when we get them tomorrow.

Then, because it would have been way to convenient for us to do everything in the same day, we'll head back to our hotel until Wednesday, when we come back to Stanford for Bodie's vocal cord surgery.

What surgery you ask?

Well hang on, because I'm about to take a super nerdy deep dive into Bodie's vocal cords and why he's having surgery.

In a healthy individual, the left and right vocal cords open and close and meet one another equally in the middle to serve two main functions: (1) they vibrate against one another to make sound, enabling us to speak; and (2) they close together to cover the entrance to the trachea, ensuring that foods and liquids don't go down the windpipe and cause the individual to aspirate.

In Bodie's case, the nerve that controls his left vocal cord was damaged during his very first open heart surgery at 5 days old. Function has never returned to that cord. So instead of moving in and out, his left vocal cord is essentially frozen, or paralyzed, in the open position. Over time, his right vocal cord became the workhorse cord, crossing over midline to meet his nonfunctioning left cord. During his heart transplant back in June, he received what is considered a "stretch injury" to that right vocal cord. So immediately post op, it too was paralyzed in the open position. That's why he wasn't safe to eat or drink for awhile post op, because he wasn't able to protect his lungs from aspiration. Stretch injuries are not uncommon following intubation. They're not nerve damage (like the injury to his left vocal cord), so they do heal as the body heals. And his did. I would say he's almost back to his baseline before transplant - the right vocal cord has pretty much healed.

So where does that leave Bodie?

Bodie still has a non-working left vocal cord, and a right vocal cord that has to work hard to do the work of both cords. He's not at risk of aspiration anymore, but his voice is soft and raspy, and always has been. It's very bothersome to him. We've been doing regular injections into that left vocal cord, which doesn't do anything for the function (it's still paralyzed in the open position), but it adds bulk to that left vocal cord, so the right one doesn't have to work as hard. The injections allow Bodie to project better and enable others to hear and understand him more easily. But the injections are only temporary and have to be redone every 3-6 months.

So this Wednesday, Bodie will be undergoing a vocal cord reinnervation surgery. Which sounds like they're going to make that left vocal cord work again. But that's not exactly what they'll be doing. Instead, they'll be taking a different nerve in the neck (one that he apparently does not need?) and will be attaching it to the nonfunctioning nerve. Over the next 3-6 months, the hope is that the nerves will grow together, and that left vocal cord will then be given impulses. It still won't function normally. Bodie's doctor said it's akin to asking someone to walk around all day every day carrying a 10lb weight with one arm. If the arm stays in a static position, their range of mobility won't be increased, but the bicep muscles will grow bigger just by virtue of carrying the weight. Similarly, that left vocal cord will get larger just by virtue of receiving constant impulses from the new nerve. So it will have the effect of permanent vocal cord injections, which is wonderful. Additionally, it is likely to improve his actual vocal quality as well.

The surgery itself should just be a relatively small incision in his neck and should take a few hours. We are expecting that he'll need to stay overnight in the hospital on Wednesday, and hopefully we'll be headed back home by Thursday evening.

So lots going on this week for Bodie. Please pray that all of his procedures go well and put him in the best position possible moving forward! As

When “Thank You” isn’t enough

2024-11-30T18:32:00.000-08:00

To our dearest donor family…

I don’t even know where to begin to thank you for the gift you selflessly gave to our family this past June. As I sat across from my son at Thanksgiving dinner this week, all I could think about was your family.

Our family has a Thanksgiving tablecloth. Each year, everyone in attendance at Thanksgiving dinner writes what they are thankful for. Over the years, it has become a beautiful history of our family as it has grown and we’ve witnessed God’s miracles in our lives. This year, all I could write was that I was thankful for the gift of organ donation.

But really, I just mean you.

And the gift you gave to our family.

I know Thanksgiving can’t have been an easy holiday for you this year. I’m sure your table felt a little emptier, and it may have been hard to think of things to be grateful for this year.

I want you to know you’re in my prayers.

Not just on Thanksgiving, but every day.

Every time I watch my son hit a new milestone we never dared to hope for before, my joy and pride are always tinged with love and sadness for your family.

But in this season of thankfulness, it seemed the right time to reach out to you and say thank you. The words seem hollow and tiny compared to the gift you gave us, but truthfully, there are no words that would encompass what we feel.

I just want you to know what a profound difference your choice has made.

Because of your decision, for the first time in his life, our 14 year old son doesn’t have to choose his activities based on what he’s physically capable of. After feeling for 14 years as though “there was an elephant on my chest,” he can breathe freely when he walks and runs.

Because of your decision, our seventeen year old daughter got a lifetime of memories to make with her little brother.

Because of your decision, for the first time in his life, our son knows what it’s like to have a whole heart pumping blood through his body. He was born with half a heart, and before his heart transplant, he had undergone 6 heart surgeries that re-routed his blood flow so that his half a heart could sustain his entire body. But that half a heart was never meant to sustain the entire body. (Yes, this means he was born with half a heart, and not even the good half! He only had the right half, which is only meant to pump blood to the lungs. The left half, the workhorse half, built to pump to the entire body, just never developed. At all.) And on top of his missing left ventricle, he had inherited a rhythm disorder from my husband, so had been pacemaker dependent since he was two months old. Needless to say, his heart was a bit of a mess. And his whole body knew it. He did the best he could. But now, for the first time in his life, he has a body working the way it’s supposed to. It’s as though his whole future is suddenly wide open.

Before transplant, our son couldn’t keep up with his friends. His friends understood. They would slow down and wait for him. But he was always behind. And he noticed. Competitive sports were entirely out of the question. Even recreational sports were a challenge for him. And he tired out so easily. He couldn’t say yes to things his friends did. Because he knew his body couldn’t do them. He knew he needed rest. His entire life had been that way. So for him to be able to keep up now is nothing short of a miracle. His friends noticed almost immediately once we returned home from his transplant.

And I want you to know a little bit about the life you so selflessly saved. Bodie is an extraordinary kid. He will tell you he’s not, and he’s really uncomfortable when people make a big deal about him. He’s a really humble kid. He’s very smart, but will also tell you he’s not that either. He’s extremely funny, and has had a great sense of comedic timing from the time he was little. Maybe it was from spending months in the hospital as a baby, or being in and out of medical appointments as he got older. But whatever the case, he’s a really funny kid. He can deliver one liners like none other (that’s actually how I knew he was going to be ok in the hospital – when his sarcastic zingers started coming back to him). He’s the most fun person to get gifts for, because he gets so excited and is so grateful. He’s quiet and unassuming and he doesn’t open up to everyone. But when he does, you see this amazingly funny and vibrant kid. A teenage boy who loves Minecraft and videogaming and Legos. And has a soft spot for animals and will adopt every single one if you’d let him (we currently have 5 cats, 2 dogs, a bunny, a turtle and lots of chickens and ducks, if that gives you an idea).

To say that your gift has made a difference doesn’t even scratch the surface. You have profoundly altered the course of our son’s life, and the life of our entire family and the community.

I don’t know if you know this, but when our son was listed for a heart, he was on life support. Everything happened so quickly. He went from graduating from 8th grade to being in full blown heart failure and on life support within a week. He was only on the transplant list for 16 hours, and his body took to this new heart almost immediately. Everything happened so quickly we barely had time to think. But what we know for certain is this. It was so abundantly clear that our son was where he was supposed to be exactly when he was supposed to be there. We didn’t know it at the time, but God was orchestrating our miracle. A miracle that unfolded in front of hundreds of thousands of people following his journey. The video of him waking up and learning he had received a new heart has been viewed by over a million people! And this miracle was only made possible by your generosity.

Dearest donor family, I don’t know what the future holds, But I do know that my son has had this new heart for 5 months now, and his body really likes it. He’s grown almost 3 inches and 3 shoe sizes. His life is completely different than it was 5 months ago. And his future is so, so bright.

Thank you so much.

In your time of grief, you made the most selfless decision. And whatever our son does with this new life, please know that he will take this precious heart with him, and use this second chance at life to leave a lasting impact.

Thank you for our greatest gift.

God Bless You.

Stealing back our moments

2024-10-07T22:15:00.000-07:00

Bodie had his 4 month transplant clinic appointment at Stanford this morning, complete with an echo, blood draw, visits with multiple practitioners and a flu shot. Thankfully, all looks great and this heart really seems to like its new home with Bodie!

He even got approval to have his 5 month appointment be done virtually, which means we don’t have to come back up until December! (The transplant team at LPCH is going to try and coordinate for him to have an echo done in November at Rady’s, which will give us a great opportunity to meet the team down in San Diego. Although LPCH will continue to be our main transplant care center, we will be switching from CHLA to Rady’s for any local care needs. We’ll miss CHLA so much, but Rady’s is so much closer and it just makes more sense for where Bodie’s at in his journey.)

Bodie’s appointments were done by late morning, but our scheduled flight back wasn’t until this evening. So we took the opportunity to regain one of what I have dubbed our “stolen moments” from this past summer.

When we came up here in June for what we thought were just 2 days of routine appointments at Stanford, I had planned a mini vacation out of it. I had purchased tickets to the Winchester Mystery House and Alcatraz, and we were so excited. We obviously didn’t end up doing either of those things, and both of the organizations were so kind and refunded me the ticket price with no issues whatsover. We were so grateful.

So when we unexpectedly found ourselves with free time today, I could think of no more fitting thing to do than go to the Winchester Mystery House.

The visit was SO fun and Bodie had a blast. It was especially fun because it’s Halloween season, so there are lots of extra decorations out to make it even more eerie.

For Bodie, a horror aficionado, it was a fun afternoon of delving into his favorite subject.

For me, it was so much more.

It was the culmination of a moment I wasn’t certain would ever come.

It may have taken us 4 months to get here. But man, was it worth every moment.

Alcatraz, get ready – we’re coming for you next.

(Ok, not quite yet. Because we’re currently stuck in a hotel by the San Jose airport. Apparently it’s foggy in San Diego, so flights were canceled left and right tonight. After delay after delay, then cancellations of all but the last flight out, we just asked them to put us on a flight tomorrow morning. Hoping the fog has cleared by then. But in the grand scheme of things, I’m ok with a little fog. After all, that’s just a little inconvenience. If that’s what keeps us up here, and not Bodie’s health, I’ll take that any day!)

Thank you SO MUCH for your continued prayers for Bodie! It’s only because of them that he is doing as well as he is. We are so grateful for the army of warriors praying for our sweet boy!

And as you’re remembering Bodie in your prayers, will you also please pray for our friend Alex? Bodie and I met Alex and his dear mom in the teen playroom (when Alex’s mom had dragged Alex and I had dragged Bodie to the teen room for arts and crafts). Alex had a heart and liver transplant 2 months ago and has faced hurdle after hurdle in his recovery. His body needs a break and he deserves to enjoy life with these beautiful new organs. Please blanket him in prayer – for strength for his body, for wisdom for the doctors, and peace for his mama.

Settling in

2024-09-29T15:18:00.000-07:00

Bodie and I have now been home a little over 2 weeks, and we’re still settling in. I’m still finding boxes that never got unpacked – and still trying to find things that were moved while Bodie and I were gone (and no one seems to know where they moved them to!). We’re so grateful to be home though!

First off, Bodie is doing great! We continue to see increases in his stamina, and even his friends have noticed his increased energy levels! We’ve been doing regular lab work and had a remote appointment with his transplant team last week. We made some tweaks on meds, but from the outside, everything looks pretty good, thankfully. We go up to Stanford the week after this for an echo and in person clinic appointment, so we’ll know for sure then. But things look good for now!

He’s settling into school, but we don’t yet have routines set in place. His first day of school was rough, because I inadvertently gave him food poisoning. (No, I’m not proud!) I accidentally grabbed an expired bottle of Almond Milk to make his pasta (yes he eats pasta for breakfast). It smelled fine, so we didn’t know any different. But when I picked him up from school and realized that he had thrown up 4 times at school (but hadn’t told his teachers, so they just thought he had to got o the bathroom a lot), let’s say my spidey senses were on high alert. You never want a transplant kiddo to start vomiting suddenly. He spent the better part of that afternoon and evening throwing up. And I spent the better of my evening watching him and talking to his transplant team to determine whether an ER trip was warranted. Thankfully, he hung in there and was back to baseline by the next morning, back to school the day after that! Nothing like being thrown into the fire of school with a transplant kid! Suffice it to say, we all learned our lesson (Bodie learned that he needs to tell his teachers if he’s throwing up, and I learned to always double check the food I’m making him!).

Other than that hiccup, school is going well and Bodie’s working hard to get completely caught up. I think he’s ready to be on campus 4 days a week (full time at his school), but our agreement with the school was 2 days on campus with the remainder at home for the first semester. We figured he’d need a little more time to settle back in.

Speaking of settling in, I keep trying to figure out why it’s so hard for me to get everything done that I need to get done.

And then I looked at my schedule and realized that in the 2 weeks since we got home, in addition to Bodie’s schoolwork and my client work, Bodie and I had a combined 5 doctors appointments, 2 lab draws, 2 therapy sessions and 2 meetings at school. And a super successful 2 day yard sale spearheaded by our dear friend Francesca to raise money for our COTA fund!

In addition, Sierra’s sweet 6 month old kitten Toulouse was just diagnosed with Feline Infectious Peritonitis (FIP). FIP is an aberrant immune response in cats to infection with feline coronavirus. Without treatment it is universally fatal in days to weeks. The good news is, the FDA approved a drug to treat FIP just this past June, enabling us to get treatment for him without resorting to back alley drug deals. The bad news is that the medication isn’t cheap (but thankfully much cheaper than surgery!). We started injections yesterday and he’ll be on daily injections or pills for the next 12 weeks, then will be on observation for 12 weeks after that. We got him for Sierra the day before Bodie and I headed up to Stanford in June, and in many ways he was Sierra’s emotional support animal this summer. He is the sweetest, snuggliest cat we’ve ever had. We all love him and would hate to lose him.

Anyone want to guess who’s in charge of obtaining and giving the injections?!? Hint – she’s one the one typing the blog entry!

So yeah. That could possibly be why I’m not getting anything done. But in the grand scheme of things, I’ll take it! Because it all means we’re home and settling in. More or less.

Bodie and Sierra had their Homecoming dance last night. In true Bodie fashion, he wasn’t very interested in giving me any pictures. This one at the top and this pic were the best I got.

Bodie went with one of his buddies, and Sierra went with several different groups of friends. It was so special to have them be able to share their Homecoming Dance with each other. At least I thought it was.

Turns out, neither kid particularly appreciated the specialness of the moment.

Especially Bodie.

With a fair amount of wrangling and a lot of bribery and threats, the kids managed to take one good pic to send to me.

And because SIerra is a teenage girl living her best life doing allllll the things (musical theatre, ASB, rowdy crowd at the games – you name it she’s all in and loving every minute!) she did send me a bunch of really good pics. I just love how radiant she looks even after the crazy last few months!

Even amidst of the overwhelm of our life at the moment, I am always reminded of how lucky we are to be in this season, where we are all home and TOGETHER. I think often of our friends who are not that lucky. Friends in the hospital still waiting for their miracle hearts to come, friends holding vigil bedside as their children fight through unexpected obstacles in recovery from their transplants, friends whose children are further out and suddenly fighting again. I KNOW HOW BLESSED WE ARE.

Thank you so much for all of your continued prayers for Bodie and for our family! We covet your prayers for continued peace in this time of transition back home, for our sweet kitty Toulouse, for Bodie’s appointments next week to go well, and finally, always, for our donor family. Without them, none of this would be possible.

High School here we come

2024-09-17T10:08:00.000-07:00

This morning, 3 months and 3 days after receiving a brand new heart, Bodie returned to school in person!

We are so blessed to have a wonderful school with a variety of schooling options, allowing him to be on campus 2 days a week until January, when he’ll transition back to full time on campus.

He’s been working remotely since school started in mid August, but today he was finally able to go to classes in person.

It’s so hard to believe he’s really starting high school! A moment I’ve never dared to dream off all the years in and out of the hospital, and most especially this past June as he lay fighting for his life.

We are forever grateful to the donor family who made this moment possible, and all of the milestones still yet to come.

All possible because of organ donation.

There’s no place like home

2024-09-15T15:33:00.000-07:00

On June 3rd, we left San Diego for what we thought would be a quick trip to Stanford for a handful of routine visits.

101 days, 42 nights in the hospital, 7 days on Ecmo, countless procedures and a brand spanking new heart later, yesterday, we arrived HOME!

We left the hotel in Belmont Shores on Thursday, with our car loaded to the brim.

We drove 235 miles south to my parents’ place on the Central Coast, and spent the night with them.

It was so fun for them to see how great Bodie looked – and that, at a little over 5’7″ he’s now taller than Gigi!

We drove from there, home, stopping for lunch at our favorite spot in Santa Monica, the Annenberg Beach House.

(I used to take the kids there in the summer, so it was wonderful to have a moment to recapture a little bit of the summer we didn’t get to have!)

We arrived home Friday at 5:30 – the irony was not lost on me that Bodie, the lover of all things horror, arrived home on Friday the 13th!

The best part was coming home to Bodie’s best friends (and a couple of their amazing moms, my best friends, who orchestrated the whole thing)! They surprised him by hiding in his bedroom with balloons, flowers and an awesome Welcome Home sign!

The boys ended up staying all evening, catching up, eating pizza and swimming in the pool and jacuzzi. To get to see Bodie just melting right back into his friend group like he’d never left, like he hasn’t just had this crazy life saving summer, was just everything…

To say our animals were excited to see us was the understatement of the century. Bodie and I missed them SO MUCH! Maxi’s face says it all.

We are so beyond grateful to be home, and are so looking forward to this next stage of healing for Bodie! We cannot thank you enough for the prayers you have all covered Bodie with.

Please continue to pray for Bodie during this next stage of healing:

Please pray that his body continues to like his new heart. The scary thing about rejection is that it truly can happen at any time, without any symptoms. So please pray that his body continues to NOT reject and his follow up appointments all go well.
Please pray for his immune system. Bodie is and always will always be immuno-compromised. He will be on immunosuppressant meds for life to try to prevent rejection of his heart. This means that he’ll be more susceptible to catching germs, and is likely to get sicker when he does catch anything. His immune system is similar to that of someone going through chemo – but he looks really healthy from the outside, so it’s easy for people to dismiss it and think it’s ok to be around him if they’re sick. It’s 100% not ok to be around Bodie if you’ve been sick or around someone who is sick! This first cold and flu season will tell us a lot about how well his immune system can handle sickness. Some transplant patients more or less do ok with illness, and others end up in and out of the hospital with every sickness. We won’t know which camp Bodie will fall into until he starts being exposed to germs. Please pray that we can successfully prevent exposure to the most serious illnesses, and that he’ll handle the less serious ones ok.
Pray for back to school. The next big hurdle for Bodie will be transitioning back into school. He’s been doing his work remotely, but will be transitioning back to school on campus 2 days a week initially, and then full time next semester. Please pray his transition to high school goes well academically and that we can walk the fine line of allowing him to be as involved as he’d like on campus while still protecting him from germs.
Pray for the donor family. As we transition home, so full of hope and excitement for this next chapter in Bodie’s life, we know another family somewhere is still trying to transition to life without their loved one. Please continue to pray for grace and love for that family.

From a father’s eyes

2024-09-03T15:34:00.000-07:00

I have been so privileged to have had a front row seat to watching Bodie’s extraordinary healing over the past few weeks, but Dusk hadn’t gotten to see it. Words can only tell you so much. We were lucky enough to have him spend the last few days with us, and what follows are his words describing the experience…

But before we get to that, BIG news! As of last Monday, Bodie has been NG TUBE FREE!!!

Yes, you read that right! Today, I happily dropped off all of the remaining formula and tube supplies at the Ronald Mcdonald House for another family to get the benefit of!

(We had been holding this big news in because Bodie wanted to surprise Dusk with it when he got here – and surprise him he did!)

FROM DUSK…

It’s been a long summer. I think I can speak for the four of us and say we’re spent. What started as a simple trip to Stanford for cardiac follow up turned into a terrifying experience.

It’s safe to say we are officially on the other side of transplant. We owe a great deal of gratitude to the million+ who experienced Bodie’s procedure with us and prayed for him during his darkest moments. Bodie is doing remarkably well up here in Belmont and his recovery is nothing less than miraculous.

I flew up to spend a bit of time with them and let me be the first to tell you this kiddo has transformed. He wasn’t a strong kid to begin with and when I saw him last he could barely walk around the block so imagine my surprise when I walked over 8 MILES with him chasing Pokémon up and down the coast!

I kept asking him if he felt tired or out of breath and he said ‘No, but I can’t feel my legs or feet anymore.’ That was about mile 5ish. We just kept walking. It took us about 4 hours.

The next day, we caught a movie and then (expecting his muscles to be really sore) we went to Half Moon Bay to take it easy. He ended up walking in the surf for 4 miles before deciding to leave

Needless to say the nurse at his appointment this morning was just as surprised when she found out reiterating, ‘he walked it all at once?’ Yup.

In addition to looking great, having a real energy, weight gain, and his vocal paresis is starting to wear off, you can carry a conversation with him now. In fact, when I got off the plane he surprised me at the airport with a missing NG tube! He’s eating and drinking unregulated now. All of this a serious answer to prayer.

Next week the plan is to have his 3 month cath lab visit and if all goes well he will be discharged to home. Amy has already started plans to pack for imminent departure.

So, it seems likely they could be back home before next Saturday, putting an end to a very trying summer. Fingers crossed that he does well this week and comes in strong enough to fly through his Cath and IVIG treatment next week!

Have Tour Guide, will travel

2024-08-24T19:24:00.000-07:00

Today, we were so blessed to have a very special friend in town, who gave us an insider’s tour of San Francisco! Bodie’s view of San Francisco this trip has been, let’s just say, not exactly Trip Advisor worthy. So it was such a treat to have Ramsey show us some fun places today!

We started by driving over the Golden Gate bridge…

And went from there into the sweet little town of Sausalito, where we beat the crowds and were able to eat lunch outside safely.

It was Bodie’s FIRST time eating out at a restaurant since his transplant! It was such a treat for him – and me!

We snapped a couple of pics of the water, then headed out very quickly once the crowds really started descending.

(We had Bodie wear a mask when we were walking around, but let him take it off for pics.)

After that, we were so lucky to get to pop over to a friend’s house to see a fellow HLHSer, Bennett!

(Bennett was headed out to a zombie themed birthday party – hence the super cool costume. But then again, me being a homeschool mom, I didn’t even bat an eye or notice until his mom pointed it out. Ha!)

His mom Kristen is one of our amazing Sisters by Heart Board members – and one of my favorite heart mamas!

Bodie was jonesing for some frozen yogurt, and Kristen let us know about a super cool local froyo spot we could check out. So we tried it out and let’s just say, Bodie was pretty satisfied. He did say he felt guilty cheating on Menchie’s (his absolute favorite froyo chain), but it was worth it. 😉

After that, Ramsey drove us all through the city, taking us on the steep streets and pointing out landmarks. It was such a blast!

Today was so wonderful, and it added such a sense of normalcy to an otherwise very tough and medically defined summer. We still have to be very careful with Bodie and germs, but it’s so incredible to be able to carve out experiences we CAN do safely! We’re so grateful for the gift of friends like Ramsey!

Best 3 days ever

2024-08-20T16:54:00.000-07:00

Bodie has officially proclaimed the last 3 days the “Best 3 days ever.”

And with good reason.

This morning, he had his follow up appointment with ENT and Speech Therapy to look at his vocal cords and evaluate progress in swallowing. Although the scope itself was SO uncomfortable for Bodie, the results were fantastic! They were shocked to see the improvement in just a month!

He is now cleared to drink as much as he wants of all thickened liquids. We need to thicken to a Level 2, which is similar to a nectar consistency. It’s slightly thicker than water.

AND he’s cleared for even thin liquids, as long as I’m observing him, he sips (no gulping or choking) and takes it slowly! And he needs to make sure to give himself a break if he feels himself starting to aspirate.

This means, HE CAN DRINK DIET COKE! (He has to sip it slowly and make sure I’m observing, but even so, he gets to drink it again!)

(No, please don’t lecture me on the dangers of Diet Coke. Read the room peeps – not the time or place for that lecture. The boy loves himself some Diet Coke and has been so sad that he hasn’t been able to drink it. The smile on his face today was pretty epic!)

AND he can eat ice cream again! (Ice cream melts to a thin liquid, so as long as he wasn’t permitted thin liquids, he wasn’t allowed to eat ice cream.)

He celebrated by double fisting with Diet Coke and a McFlurry from McDonalds!

The best part is that his group of best buddies (we call them “The Quad Squad”) sent him a picture of them a few hours later, also double fisting sodas and McFlurries from McDonalds to celebrate Bodie!

I mean, how can you ask for better friends than this?!? Bodie misses them so much and can’t wait to get back home to be with them again!

The other reason the last 3 days have been so fantastic is that, in addition to the 3 miles he walked on Sunday night, last night we went on another walk. I let Bodie lead the way, and he chose several Pokémon routes. In the excitement of following the routes, we may or may not have totally gotten lost and ended up in the next town over! All told, we walked over 5 miles and he did AMAZING! He’s never been able to walk far like that before.

In a summer with a lot of rough moments, we’re so excited to have some really great ones to celebrate!

IVIG – the gift that keeps on giving

2024-08-19T14:05:00.000-07:00

As predicted, Bodie’s IVIG (Intravenous Immunoglobulin treatment) last week did a number on him. A lot of kids (and adults) who have to go through IVIG treatment have a rough time with the side effects, which can include chills, fever, flushing, headache, nausea, vomiting, stomach pain, joint pain, low back pain, and tiredness. Sounds super fun, right?

The list of super fun symptoms can happen during or after treatment. In Bodie’s case, despite being premedicated with Benadryl and Tylenol, he tends to do fine during the infusion itself, but then has a delayed reaction where a day or so later, he starts feeling generally crappy – and stays that way for a good 2 or 3 days. So, true to form, Bodie was fine on Thursday when we got home, then woke up Friday feeling terrible. Spent all day Friday and Saturday feeling like he had the flu. It makes me so sad, because it always feels like a step back when he’s doing so well and then has to go through it all over again. I have to keep reminding myself that it’s just from the IVIG and he’ll be back to feeling better shortly.

Thankfully, he was feeling better by yesterday afternoon, and actually WANTED to take a walk last night! I was shocked – this is a kid who has never wanted to exercise, either before or after transplant. (Before he didn’t like to because his endurance was so low, and since transplant he hasn’t wanted to because, well, everything hurts and he’s still healing.) But he wanted to go Pokeman hunting – so we did. We started walking…and kept walking…and walking…we ended up walking over 3 miles!

He wanted to keep going, but I made him stop because it was late and he had early clinic appointments this morning. But he totally could have gone longer. He was so proud of himself!

The best part was when he said to me “You know, mom, it’s weird. Right now, my legs and my feet heart” (partly because he was walking in slides), “but my heart feels fine. Like it doesn’t hurt at all. You don’t get it because you weren’t in my body before. But it always felt like something was putting its arms around my chest and just squeezing really hard. There was always pressure. That’s why I was always out of breath and could never run around the house or anything.”

To hear him be able to voice that change was incredible for me. Totally made all of this hard work and rehabbing him worth it!

He had labs, an echo, ekg and clinic appointment this morning and everything looked great! Praise God!

As we keep moving forward in his healing, we still desperately covet prayer for the following:

Please please pray for his vocal cords. He has appointments with ENT and Speech Therapy tomorrow morning. This will be the first time we’ll get a look at his vocal cords since he was in the hospital. These appointments are really stressful for him, not to mention extremely uncomfortable. He SO wants to be able to drink again, and to get rid of the NG tube! We know it will be a process, but please please pray they see some improvement and he’s allowed to drink again! He’s still so quiet that we don’t know if they’ll see any change. But he’ll be so demoralized if that’s the case, PLEASE pray for healing of his vocal cords!
Please pray for his Donor Specific Antibodies to remain at 0. The IVIG is really hard on him, and he has to do it monthly until he gets 3 consecutive negative DSA blood tests. His bloodwork done in July was officially his first negative. They took blood before last week’s IVIG test, and we should get those results this week. Please pray that test will also be DSA negative. If it is, all he will need will be one more! That would mean his IVIG infusion in early September could be his last if that one turns up negative as well! Please, please pray the tests all show no DSA antibodies in his system.
Please continue to pray that Bodie stays healthy and his stamina continues to improve. We know he is only doing as well as he is because so so many of you are praying for him – please don’t let up now!
Please pray that we are able to work out the logistics of school and coming back home next month. We’re figuring it out, but there are a lot of moving pieces and it’s weighing heaving on my mind. Please just pray we work it out in the best way possible for Bodie and set him up for success in this coming school year.
As always, please continue to keep his precious donor family in your prayers. They are never far from my mind and we will forever be grateful for the gift they gave to our son amidst their darkest of hours.