Cal’s fight against vasculitis & heart failure

Cal’s fight against vasculitis & heart failure Hi, please read my pinned post

06/18/2026

Still trying to process these last couple of days.

Calvin’s labs look so good. Good enough that we were able to lower his prednisolone dose by another .5ml. So he’s officially down to just 1ml of prednisolone.

You think you know toddler tantrums until you have a toddler on high levels of steroids. The rage and level of sleep deprivation is next level. We are so happy to be getting our little guys sweet personality back.

His BNP is stable from last month in the upper 600s. That sounds terrible to most but coming from it being over 120,000 at one point it’s a beautiful number for us.

His inflammation markers are still low which is a huge win for his vasculitis control. The infliximab is doing its thing without the cytoxan on board anymore.

His MRI was mostly stable with (possibly) some areas of improvement. We will know for sure more next month when we meet with vascular surgery again.

Cardiology for the first time since his initial hospitalization actually told us his heart might look a little “better.” It’s not normal by any means but there was some improvement in his EF and GLS. EF is now roughly 45% and GLS is -12.4.

Enjoy the clip of Cal back in January vs today. What a difference. I still can’t believe we are here. Thank you for all the love and prayers.

*I don’t own the rights to this music*

🎈

There’s a kind of childhood that doesn’t get talked about enough.The one lived quietly beside hospital beds, waiting roo...
06/18/2026

There’s a kind of childhood that doesn’t get talked about enough.
The one lived quietly beside hospital beds, waiting rooms, infusion days, emergency calls, canceled plans, and long stretches of uncertainty.

The siblings of medically complex kids.

The ones who pack a bag without complaining because they know there’s another appointment. The ones who color in waiting rooms, eat dinner from hospital cafeterias, and miss their sports practices. The ones who become flexible before they should ever have to.

They learn that birthdays are sometimes just immediate family. Family trips sometimes get canceled. Mom or Dad sometimes leave for extended periods of time. Attention gets divided. It’s not because they matter less, but because survival sometimes takes center stage.

And somehow… they still show up.

They celebrate every victory their sibling earns. They become experts at hand washing, sanitizer stations, and all the routines that come with keeping someone immunocompromised safe. They celebrate good scans, encouraging echo results, and labs moving in the right direction or STABLE. They know their way around the children’s hospital without needing directions. Along the way, they grow into patient, compassionate, protective, and resilient little humans in ways that can’t be taught; only lived.

But being “the strong sibling” doesn’t mean it’s easy.

While everyone asks, “How is your brother doing?” they quietly keep going.

They miss things. They carry worries quietly. Sometimes they act out, sometimes they get extra independent, and sometimes they sit in waiting rooms reading books while the world moves around them.

People often call the parents of medically complex kids strong…and they are.
But the siblings? They are strong, too.

Because they sacrifice pieces of their childhood month after month. Year after year.

To the siblings who wait through appointments…
Who celebrate small wins…
Who adapt again and again…
Who love even when things feel so unfair…

You are seen and your story matters too.

And one day, people will see that some of the strongest, kindest humans are built in hospital hallways, clinic rooms, and moments nobody else thinks to notice.

Healing belongs to the whole family,
not just the patient.

The siblings carry so much love and strength, too.

06/17/2026

Dance party before Duke Day 2:
Infusion, labs, and echo

🎈

This time, Calvin had a challenging recovery from anesthesia after the MRI. He was inconsolable for a solid 45 minutes a...
06/16/2026

This time, Calvin had a challenging recovery from anesthesia after the MRI. He was inconsolable for a solid 45 minutes and eventually ripped out his IV ( I DO NOT recommend IVs in the hand for a 2yo…just sayin) but him ripping that IV out did somewhat calm him. Given the circumstances, we made the decision to postpone his infusion and echocardiogram until tomorrow. Putting him through another IV stick and how stressed he gets just from echos on top of hours sitting for the infusion meds would just add to his discomfort today. He’s tough but not superhuman.

Calvin is now napping at the hotel with his papa. I took the girls to the pool to burn off energy and take their minds off the ordeal. The day was long for them and filled with waiting and witnessing their brother's distress….which was difficult for everyone involved.

They took him back about 15 min ago for his MRI. Keep little man in your prayers we get some positive results. Stable or...
06/16/2026

They took him back about 15 min ago for his MRI. Keep little man in your prayers we get some positive results. Stable or better. 🎈

06/14/2026

Calvin is pumped and ready for his trip back to Duke. This time sisters will be helping to keep him company (when they are able.) He has an MRI scheduled for Tuesday and immediately after he will get his next infliximab infusion.

We have not begun his methotrexate med yet so no update on that. He had a runny nose a few weeks ago and then we went on a camping trip to the OBX and then we had a big weekend for sisters events so it just wasn’t good timing to put something new in his system. The main side effect of this med is nausea and upset stomach so it wasn’t a good time. His rheumatologist gave us the OK to begin this month after we see them so that’s what we will do.

Calvin does have to be sedated for his MRI so please keep him in your prayers everything goes smoothly and we get happy results. Last PET scan he had we had trouble getting his blood pressure to come back down after the sedation wore off.

He’s been sleeping, eating, and playing non stop. Still LOVES being outside, he will find a stick anywhere he goes, he’s so happy sisters are out of school to play with more, and he’s talking so much more. His meltdowns are getting so much better. He still rips his NG tube out just about every other month but being a 2 year old with a complex medical history, tons of meds on board, big new emotions and communication gaps…it can be frustrating for him I’m sure.

Hope everyone had a fun weekend. Enjoy your Sunday. 🎈

Calvin had an action packed weekend!This time it was all about his sisters. Our middle baby graduated kindergarten on Fr...
06/08/2026

Calvin had an action packed weekend!

This time it was all about his sisters. Our middle baby graduated kindergarten on Friday and then Saturday was our oldest daughter’s dance recital. She was in all 3 shows. Thankfully my husband stayed back during the first 2 shows with Calvin so Cal only had to tough it out for the 6pm show. He did great. I think it helped that he loves music and all the pretty girls up on stage kept him engaged. We just have to be careful with timing on events because he has time sensitive meds he takes every morning and night. We made it home with plenty of time though.

We wrapped up the weekend on the boat yesterday and met some friends out on the water. We haven’t seen them since before Cal got sick {again} so it was nice catching up. It was a beautiful day.

Hope everyone had a great weekend and your Monday is good to you.

1st Camping trip ✔️ OBX, NCHe played in the ocean, ate lots of shrimp, waved at everrrrybody, rode his bike through the ...
05/31/2026

1st Camping trip ✔️ OBX, NC

He played in the ocean, ate lots of shrimp, waved at everrrrybody, rode his bike through the camp grounds, slept in a tent (very windy night), went on a couple hikes, 4 ferry rides, and had some strawberry cheesecake ice cream to finish off the trip!

05/22/2026

Oldie but a goodie

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2301 Erwin Rd
Durham, NC
27705

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