Havyn is first in line for an MRI this morning. That’s an answer to prayer! We are sitting in radiology now, waiting to start sedation.
Let me catch you up to speed on everything…
We met with the oncologist yesterday and have a clearer picture of what the next steps are for sweet Havyn.
The spinal tumor: The MRI this morning will be to get a better look at the mass. It probably won’t reveal anything more about the pathology of it, but it will give the neurosurgeon the views he needs in case we decide to do a biopsy. As I mentioned before, a biopsy itself is rather risky. But the clearer the picture, the greater ability he’ll have to find the right way through the spinal cord to get to the tumor. In addition, it will provide a clearer baseline. Apparently “every magnet is different” and getting two images from the same machine (for comparison’s sake) is preferable. Unless this MRI reveals anything remarkably different than what we saw, we’ll continue to watch this tumor instead of doing anything about it.
The brain tumor: The optic glioma needs to be treated. A few years back that would involve surgery and certain vision loss in the affected eye. Today they prefer a chemo treatment. So we’re preparing to begin a chemo regimen with her. When you hear chemo you typically thing a couple things:
- Cancer. We don’t believe her optic glioma is cancerous. (Can’t be sure about the spinal, but we’re praying the same thing there.) Even though it’s benign, it’s still a problematic tumor. If it continues to grow we could be looking at deformity, vision loss, and worse.
- Horrible side effects. The types of chemo she’ll receive (Vincristine and Carboplatin) don’t typically cause hair loss, nausea, infertility, etc. In fact most kids stay in school, run and play, and seem relatively unaffected. How cool is that!?
She’ll receive a port, and chemo treatments will be once a week for 12 weeks to start. They’ll continue for another 48 weeks, but not with the same frequency. Regular scans throughout will help us know if the chemo is working. There’s a hope that the spinal tumor would respond to the chemo too!
Our two very next steps:
- Vacation! We had a vacation planned for the next two weeks already. We’re going to abbreviate it, but the oncologist thinks it will be just fine for us to get away for a bit before we start down this chemo road.
- Second opinion. We’ve been in discussions with the NF Clinic in St. Louis for some time. They are some of the national leaders in NF research and treatment. We’re sending them copies of our recent scans and confirming with them that we’re on the right track.
Keep praying! Wouldn’t it be amazing if the scan today showed NO TUMOR!?
By the way, she’s in room 7 for her MRI… (this will mean something to Tammy’s family)
Praying for everyone! so scary but God is bigger than all of this.
I love you all! My heart and prayers are focused and centered on completely healing.
Praying for you and your family throughout this process. Is your vacation including a trip to Grand Havyn by chance if so let me know I’d love to grab a coffee with you and catch up. My wife and I live in Grand Rapids now.
Praying for Havyn and the rest of your sweet family. I’m living in St. Louis now, if there is anything at all that I can do for you all, if or when you are in the area for a second opinion, please don’t hesitate to let me know.