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.
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!
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!
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!!!!
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!
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!
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!
