Time for a little vacay!

Grand Haven!

So we’re heading to Grand Haven in the morning. Looking forward to a little pre-chemo R&R. Looks like we’ll be starting that chemo on June 28.

We talked to Dr. Morris at the NF Clinic in St. Louis today. She hasn’t been able to review all the scans (they are still in the mail) but based on previous scans and what we were able to tell her, she thinks the suggested chemo regimen is the correct thing to do. That was the affirmation we needed. After they receive the scans they’ll review them to see if they see anything else we need to be aware of. Specifically she’s curious to see the spinal images to look more closely at the hamartoma and also the tethered cord. She said it’s common for NF1 patients to have spinal cord oddities. Lots of extra tissue and things that other patients won’t have.

We’ll still plan to head to St. Louis later this summer or early Fall, but we’ll plan to receive her treatments here in Louisville. Meeting a couple times a year with the doctors in St. Louis will help us make sure we’re staying on top of everything as best we can. They are some of the leaders in NF research and they know this disorder inside and out.

I’m sure we’ll post a bit over our vacation, but hopefully no medical updates to report. So while we take a vacation from this place, feel free to take a vacation from reading the blog!

3 Replies to “Time for a little vacay!”

  1. I’m so glad you all are getting to spend some quality family time together!! Enjoy this time and rest up for the long road ahead. Havyn has so many people in her corner, I know she will do great!!

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