Lessons in Patience

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.

1. 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!
2. 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!
3. 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!
4. 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.
5. 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.
6. 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

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.)

1. 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.
2. 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…

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…

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

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

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

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

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

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

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

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

And then went back to school for 3 weeks.

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

And missed another 3 weeks of school.

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

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

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

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

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

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

Yes, it is absolutely as melodramatic as it looks.

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

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

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

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

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

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

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

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

It’ll totally end up like Groundhog Day.

And so the vicious cycle begins again.

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

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

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

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

So this is fun...

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

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

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

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

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

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

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

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

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

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

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

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

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

More than anything, we covet your prayers!

Is there a specialist in the house?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So pray we find that sweet spot.

This feels familiar

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

Unfortunately, our suspicions were correct.

Bodie has CMV (Cytomegalovirus).

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

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

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

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

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

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

We found this all out at 6pm last night.

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

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

So we could really use prayers:

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

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