Hope for Baby Bennett: This feels familiar

Friday, February 28, 2025

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:

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

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

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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."