We officially got the welcome news today that Havyn’s optic pathway glioma (the tumor behind her eye) has not grown in the last 6 weeks. In addition, the spinal lesion (still a bit unsure exactly what it is) hasn’t changed. We welcome and celebrate this news!
While we’d love to see tumors shrinking, having the growth stopped is a win. And technically she’s only half-way into the initial run with her chemo, so reduction is still a possibility. Normally she wouldn’t have an MRI for another 6 weeks. They wanted one earlier to make sure that the spinal thing isn’t aggressive. She’ll have another one in six more weeks and hopefully we’ll have more good news to share!
The past two weeks of chemo have been interesting. On one hand, they have been easy from a treatment standpoint. She has been taking a break from carboplatin — which is the more difficult of the two chemo drugs she takes. Not only does the dosing take MUCH longer (2 hours vs. 30 seconds) but the side effects are worse. As a result, the appointments have been a bit briefer and her blood counts have come back up considerably.
But the anxiety has really been setting in. She knows more now what to expect and so far that hasn’t been a good thing. She starts to panic a bit the moment we get in the car and goes in and out of “freakingoutness” until after the appointment is done. And even then she deals with quite a bit of emotion for the rest of the day. So far none of this has become normal for her and that’s okay. Yet in the midst of all of it she finds ways to have fun. She and Dr. Elster played with a bouncy ball for a few minutes and I haven’t seen Havyn giggle like that in quite a while.
We brought Henry (6 years old) with us today. At one point, Havyn wouldn’t share her toy with him. He commented “it’s not fair!” I probably overreacted slightly, but without a pause I said, “You know what’s not fair? That Havyn has NF-1. And she has tumors. And she has to get needles put in her every week. I don’t want to hear you whining about her having a toy because I don’t think you really want to trade places with her.”
And it’s not fair. I would take it away if I could. Tammy and I both would in an instant. But we can’t. All we can do is care for her, love her and pray for her through this journey. Unfortunately life just isn’t fair sometimes. It would be easy to get angry and have our own moments of “freakingoutness.” And we’ve had our share of that. But pretty quickly we take a deep breath and look around us. We have been given so much! We have an amazing family, beautiful kids, great careers, a lovely home, wonderful neighbors, loving friends, great doctors, and… well you get the idea.
Above all we have been given grace from our heavenly Father. He looked down upon his children struggling with the deep sickness of our own sin. And then He did something about it! While I am unable to take away Havyn’s sickness, our Father is able to take away ours. He went to great lengths – willing to give up His own son – to give us a way out.
“For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.” (Romans 6:23)
“Thanks be to God for his indescribable gift!” (2 Corinthians 9:15)