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!