What do Havyn’s tumors and a horse’s home have in common?

Stable!Both are stable!

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)

8 Replies to “What do Havyn’s tumors and a horse’s home have in common?”

  1. Celebrating stable! Praise the Lord! We are praying every day for Havyn and for your family. He loves and cares for us! As the song says, “when your eyes are on the storm, you’ll wonder if I love you still. But when your eyes are on the cross, you’ll know I always have and I always will.”

  2. I just learned of everything going on with sweet little Havyn last Tuesday night (from a good friend who doesn’t attend SECC, but volunteers as a nurse at camp) and got this site from her tonight! Havyn is a beautiful and amazing child and is sharing Christ just by being herself! I wish I was there to give you all a big hug! Please know that we are fervently praying for all of you and we love you so much!

  3. Thank you for the update. Been thinking about you all. Stable is great news. Many prayers coming your way.

  4. Steve & Tammy,

    I just now read and caught up with all that your family has been going through this summer. I appreciate your honesty and the way you have explained everything that Havyn and your family has been enduring. With news like this, I might say I can’t even imagine what you’re going through, but your blog has been a great way to welcome me and complete strangers into your world. I also appreciate your specific prayer requests, posted scriptures, and your words of encouragement and your testimony during this time. The Wileys will be praying for your family and for Havyn’s health and healing. Thank you for updates. Hugs, love, and prayers.

    1. Carrie! Thanks for stopping by and commenting. The blog started as a way for us to share quickly with friends and family but it’s turned into my therapy and will hopefully be fun for her to look back on someday. If it can encourage others along the way…. that’s s bonus! Sure appreciate your prayers…

  5. Sweet prayers & hugs for your Tuesday journey from one NF1 family to another! Good counts for tomorrow!?

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