Home sweet home… (and some updates)

First… we’re HOME! We rolled in about an hour ago and it feels good to be home. Havyn has been eager to see everyone, especially her cousin Ethan. Right now the plan is a bit of rest, and then tomorrow we’re packing for vacation. We’re hoping to head to Grand Haven, MI on Friday for a little pre-chemo time away.

Now for the updates… Here’s the rundown of what we know:

1. The optic glioma. The tumor is too big to go untreated. It looks like within two weeks she’ll get her port and begin chemo. Once again, this is a fairly “mild” chemo as these things go and typically kids have few side effects. There have also been remarkable results with this specific kind of tumor. I’ll have to share a bit about our new friend Eliana at some point. The ophthalmologist was able to get a good photo of the back of her eye today and you can see significant swelling where the tumor is pressing. May share that photo soon.
2. The tumor-not-a-tumor hamartoma on her spine. We were able to see the MRI today. At some point we may obtain photos to share, but when looking at the cross-sections of the spinal column, it is understandable why they don’t think this is a tumor in the typical sense. The best way I can describe it is that her spinal column is pleasantly plump in the T4-T9 vertebrae, but there doesn’t look to be anything there that shouldn’t be there… just extra of the stuff that should be there. This is not to say there’s no concern, just that it likely isn’t cancer. Time and future scans (and how it responds or doesn’t respond to chemo) will tell us a lot. The oncologist did tell us that a spinal hamartoma of this size is very unusual but that they still lean toward that being the diagnosis.
3. Scoliosis. So this is a new thing. We’re not surprised because we suspected it, but we got a confirmation that she has scoliosis today. We will meet with an orthopedist / spinal surgeon within a few weeks to discuss next steps. NF-1 can lead to scoliosis (what can’t it do!?!?!?!) but it can also be caused by…
4. Tethered cord. We mentioned a couple days ago… and it was the least of our worries at the time… that she likely has a tethered spinal cord. Short version: your spinal cord is supposed to dangle freely inside of your spinal column. Hers doesn’t. There is some tissue connecting it downward. Typically this leads to walking on toes, tightness in legs, and constipation issues. She doesn’t deal with those things so we wouldn’t have suspected anything. But it could be related to the scoliosis. I’d say at this point that it looks probable that she’ll be facing a “snip” of that tissue. It’s a relatively routine procedure with low risks. We’ll know much more when we meet with the bone folks.

And so there you have it. We continue to be grateful for the love and prayers offered up by so many. We are in this for the long haul so your support makes an enormous difference.

Next treatment regimen: BEACH!