One of the most common questions we get is “how’s your girl doing?” We are always happy to answer, “She’s doing great!” And she really is. Of course, until there is a cure for NF-1 and it’s symptoms, she’ll never be out of the woods in this life. But all things considered she really is doing quite well. And MAN have we been busy!?
Last month she had her quarterly MRI scans. The results were once again stable. Tumors still exist but they aren’t advancing. This is good news. We were a bit concerned heading into the MRI. Toward the end of 2018 and early in 2019, Havyn occasionally complained of horrible headaches. She’d be inconsolable until, after 20-30 minutes, the headache would pass. Usually she’d vomit and be back to her old self. These seem to have stopped, thankfully, so we really don’t know what caused them. We were concerned that there was tumor growth, but NOPE all is stable.
Havyn has outgrown her back brace and is getting a new one this week. She’s excited but won’t tell you what pattern/color she picked. She wants you to be surprised!
The only other bit of medical news to share is that we’ll be heading to St. Louis at the end of the month to meet with the team of specialists there. This has become an annual trip now and we are expecting no major news when we’re there.
Since our last post, our family has been as busy as a family with young children should be, I suppose. I feel like we’ve been running around like crazy, but I think that’s pretty normal. We enjoyed a lot of Christmas activities, including Christmas Together at church, the Aiden’s Legacy Holiday Party, and Christmas in Anchorage.
Our highlight of 2019 so far is the trip we took to Orlando in February. Our school has a “winter break” and we chose to head South! We spent a bit more than a week hanging out in 80 degree weather and almost no rain. It was JUST what we needed!
We rented a minivan and took the biggest road trip we’ve ever had as a family. We stopped near Atlanta to spend a couple of nights with friends. (Thanks for the hospitality to Weston, Whitaker, Winslow, Wren and their parents!)
Then it was on to the Sunshine State! We joined with our great friends, the O’Neal family, to rent a beautiful home. (vacationbythemouse.com) We fit 12 of us comfortably in the home and even had a small private pool! The kids sure loved hanging out at the house.
We opted not to visit Disney and Universal. I think that our Make-a-Wish trip (has it already been a year!?!?) spoiled us a bit. We probably need to be a bit more removed from the rock-star treatment we got or the kids (and their entitled parents) will start whining about having to wait in lines. Instead, we packed in a bunch of other fun.
We spent a day at the Kennedy Space Center, enjoyed the Crayola Experience, and had a blast at LegoLand. We ate dinner with dinosaurs, visited the amazing Terrie Spurrier (my great-aunt), stopped by Leesburg to Mamaw and Papaw’s place, and even got to witness a rocket launch.
One of the absolute best parts of the trip was getting to return to Give Kids the World village. This place was our home for the Make-a-Wish trip and it’s an entire community just for those on their Wish trips. As an alumni family, we were able to return to enjoy the amenities. We enjoyed a day playing games, eating ice cream, swimming in the pool, eating ice cream, seeing Havyn’s star, visit Santa Claus, and also we ate some ice cream.
To make that stop even more special, we got to spend the day with The Incredible Holt and his family. Holt is a neighbor of ours who has fought off cancer (Ewing Sarcoma) and was granted a wish to go to Disney. They were on their trip that week and had decided to take a down day the same time we were there! It was fun to let the kids play and to spend some time with friends. We can’t wait to go back to the GKTW Village again!
Let’s not forget that Henry turned 9 in January and Amelia just turned 7. Her big gift, and something she’d been BEGGING for, was to get her ears pierced. She didn’t cry a bit and is SO happy!
So there’s your update. See you again in six months. (Hopefully sooner, but no promises!) As always, thanks for loving our family so well. As we’ve reflected on what we’ve experienced, and as we think about what may come, we realize how impossible this journey would be alone. And, of course, this isn’t just true because we have a daughter with special medical needs. Life works best when you have people to support you. Like Solomon said, “Two people are better than one. They can help each other in everything they do.” Thanks for standing with us and making us better. I hope we can return the favor one day.
Tuesday needed a lift. Thanks for the update.