First of all, I don’t think there’s a girl walking this earth any sweeter than Havyn. She is an absolute joy and a light to everyone around her. If you haven’t had the blessing of getting to know her and her amazing siblings, come hang out with us sometime. You’ll walk away smiling (and probably exhausted, too)!
Tuesday was a rough day. We started the morning with her first out-patient chemo infusion. She did relatively great. She freaked out a bit when they poked her finger and when they put the line into her port. Who wouldn’t, though!? She was quickly all smiles and we played games and watched movies while she received her medicine/poison. We met some amazing people. Two patients, Anna and Olivia, really stood out. Sweet girls that are AMAZING warriors. I hope our paths cross again. And a special thanks to our nurse, Lesa. It was great meeting you and I know we’ll be seeing a lot more of each other.
Good news is… that her blood counts are still looking great. That’s typical for a couple weeks in, but we’re grateful nonetheless. Also, somehow she hasn’t yet gotten sick from the THREE-DAY-LONG-104-FEVER that her little brother suffered through. He seems to be in the clear now and we’re praying, crossing fingers, and knocking on a variety of wooden surfaces hoping that Havyn won’t get sick.
Ok… so the bad news. Scoliosis. Big time. You can see it in the xray. Scoliosis in measured in degrees. 0 is perfect. Up to 25 degrees they monitor and track it. 25-35 and it’s time to wear a brace. North of that and surgery is usually recommended. Havyn’s curve is measuring 46 degrees. The worst portion of the bend is in the same region as the spinal lesion we learned about a couple weeks ago.
We’re reeling a bit from that news. We knew she had it. We had no idea the severity. There is way more we don’t know than what we do know at this point. It’s our understanding that surgery is not an option during chemo. But the orthopedist said she wanted to speak with a bunch of other doctors to help advise us. She was fitted for a brace and we should see that in a few weeks.
In addition (and this is a long post… sorry) we received a call from Dr. Gutmann in St. Louis yesterday. Long story short… we’ve been eager to get to St. Louis to meet with their NF specialists. We were scheduled to head there in September. After reviewing her recent MRIs and xrays, Dr. Gutmann thinks that’s not soon enough. His words to us were, “you guys really need a quarterback. Mom and dad don’t need to be trying to juggle all of the specialists, information, and emotion. You should be mom and dad. Let us be your quarterback.” THANK YOU… THAT’S EXACTLY WHAT WE’VE BEEN SAYING!
We have several options for her. The closest two are Cincinnati (< 2 hrs away) and St. Louis (4 hrs away). Both are good options but for a number of reasons we chose St. Louis. I called Dr. Gutmann’s office back. I invited him to be our Tom Brady. (He is a Michigan grad… Go Blue!)
They are attempting to coordinate the right specialists so we can see everyone at one time. We are waiting a return call in the next days or weeks. We will drop whatever else we have in order to get her to St. Louis.
We are in a waiting and trusting game right now. Havyn’s proptosis is getting noticeably worse and the fairly rapid onset of the scoliosis has us worried. The future for Havyn remains very murky and uncertain. If we’re honest, though, isn’t that true for all of us? None of us know what tomorrow holds. You don’t know what will happen to you on the road as you drive home tonight. You don’t know what the next routine physical may reveal. You don’t know when you might receive a middle-of-the-night phone call with devastating news. We all have the opportunity each day whether we’ll live in fear or choose hope and joy. We’ve made our choice. We encourage you to do the same.
So our plan remains the same. Pray. Stay calm. Pray. Process info as we get it. Pray. Love our little girl every day. Pray some more. Thanks so much for joining us in this journey!