First of all, I’m not sure why our overnight post wasn’t automatically sent to subscribers. We’ll see if this one does! (WARNING: Adorable picture below!)
If you read that post, you know Havyn is in the hospital for a couple days. She’s having a GREAT morning. She was tired, combative and emotional last night. Today she’s back to being Havyn. Her fever is still hanging on but it’s down to about 100. The doctors still believe it’s probably viral but we have to stay here and wait on those cultures. It’s a remote possibility that she got an infection through her line during chemo yesterday. It looks like we’re here until Friday. Stir-crazy is in our future. If you’re in town and want to come visit, she may be up for that — it might help her pass the time. Call us first because we’re going to try to get her to take a nap for a bit today.
Here’s a couple pretty important updates:
The biggest news is that we had an MRI last week and the results are in… STABLE! While her tumors aren’t shrinking, they aren’t growing either — and that’s a good thing. That tells the oncologist that this regimen of chemo is working. So we’re going to stick with it. She started up again yesterday and has about 38 weeks ahead before she’s done. There’s a few breaks in there and they’ll run her through an MRI every three months to keep watching everything.
We were reminded during the MRI that we can’t stop being her advocate. Due to what we think were clerical errors, she was only scheduled for a brain MRI. The nurses and techs assured us that the orders were only for the brain and that it wasn’t necessary to see the spine this time. “But she has a giant tumor thing in her spine. The doctors said we needed to see if it was growing or not.” I wouldn’t let them start the IV and sedation until we had spoken with doctors. During the first call into the oncologist the lady on the phone confirmed brain only. It wasn’t until we pushed more (and interrupted a doctor on vacation) that we got the order adjust for brain+spine. Add to that a bit of waiting for insurance to come through and she got the full MRI. And then sure enough… when at the oncologist on Tuesday we were told that she was supposed to have both along. Anyway, if you’re a parent, don’t stop fighting for what’s best for your kids. It might be medical, educational, social or otherwise… Nobody is going to care as much for your kids as you do. The title “parent” is a high calling and responsibility but it’s a distinct privilege and the rewards are great!
The other news is that she has a new brace! We’re still waiting on some insurance stuff to settle out (appreciate your prayers) but we were able to get the brace earlier this week. The goal of this brace is to hold her scoliosis at it’s current state. A corrective brace is not an option for kids her age, and they’d really like to get through chemo before we start talking about surgery or other corrective options. We love this brace. It may still need a few minor adjustments, but it actually fits her! It is just her size and wraps perfectly around her beautiful asymmetrical shape. She is so much more comfortable in it and we are confident that it’s actually helping her. We are pretty certain the other brace was doing more harm than good.
Finally, my apologies for the blog post from last week. I’m not sure what happened with it. We wrote a post with information about the MRI and some specific prayer concerns. It has vanished and I can’t get it back.
Finally x2, thanks for your prayers! Tammy and I had a long discussion last night (just a few minutes before the fever spiked) and we were talking about our fears and worries. One of those is how her condition will affect her attitude and relationship with the Lord as she grows. When life beats us up, most people tend to polarize. Some hang their head, getting trapped in depression and anger. Others look up, finding joy in the midst of pain, and see their struggle as an opportunity for growth. Our prayer for Havyn is obviously that she’d find herself solidly in the second category. Please join us in praying for what she’s facing today but just as much for how she’ll navigate the road ahead.