Ahh… what a day! Much like yesterday, this post will be a bit of a snoozer. Here’s the highlights:
Havyn did great meeting more doctors today… Dr. Gutmann was super amazing… We found out she needs a different brace for her scoliosis and will get that in the next couple weeks… Our plan is to keep visiting the team in St. Louis every three months… Oh, and we went to Ikea and a baseball game. The end.
If you desire feel free to read the details… Continue reading “St. Louis, Day 2”
Let me preface by saying that this post will be long – lots of details about what we learned today. It’s therapy for us and provides a journal for us to look back on. I really don’t expect people to actually read it. The synopsis is:
Havyn had a great day and we got to meet a bunch of great doctors. We learned a few things, we ate some lunch, and we saw a big cockroach. We are officially in love with St. Louis Children’s Hospital and the doctors here. Well, except for the cockroach. Oh yeah, we went to the zoo. The end.
If you’re looking for a good sleep aid, feel free to read on. Continue reading “St. Louis, Day 1”
We have arrived in St. Louis. Would you believe that there is a hospitality house here for out-of-town patients called HavenHouse!? As soon as Tammy found it, we knew it was the place for us!
It’s kind of like a Ronald McDonald House (I think) and it’s quite a blessing! It used to be a children’s home but it’s been converted into use for families who are in town for hospital visits. They offer reduced-rate rooms with breakfast/dinner included! There are play rooms, a gym, arts and crafts areas, and more! Havyn is so excited to be here!
We’re turning in for the night and will see an oncologist first thing tomorrow morning. Then we’re on to the ophthalmologist. We should be wrapped up by about lunch time. Then it’s on to the St. Louis Zoo after that!
Visit Haven House at havenhousestl.org
We’re sitting at an office in downtown Louisville right now as Havyn is hooked up and getting another dose of her chemo. She’s quite a trooper. These appointments haven’t really gotten much easier for her, but after a few tears she watches movies, plays games, and waits patiently (as much as a 3-year-old can be patient) for them to pull that needle out.
The car is packed, and as soon as we’re done here we’ll hit the road to St. Louis! Continue reading “Westward Bound!”
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! Continue reading “What do Havyn’s tumors and a horse’s home have in common?”
We’re back from a great few weeks at summer camp. It was great having the whole family together while we served with over 150 volunteers and 1000 campers! We rolled into town last night and are downtown today for a follow-up MRI.
This is six weeks past her last one and will hopefully tell us that the tumor is shrinking and the spinal lesion isn’t progressing. This chemo is pretty slow acting so we don’t expect to see much. Frankly, we’d be excited to have the results show no movement in either direction. It would be great to hear that the tumor had stopped growing. We may not get results until Monday and we’ll update then. Continue reading “Back to life, back to reality…”
Havyn had big sis Amelia there yesterday for some sisterly support. We want to expose Henry and Amelia, one at a time, to what Havyn has to go through on Tuesdays. Our hope is that they understand why she is getting more attention, why it is important to continue to pray for healing, and also why mom is constantly saying “Wash your hands” — “But I did, mommy!” — “Well wash them again.”
Yesterday was hard. Continue reading “Some Chemo Company”
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… Continue reading “Disappointing news”
So the first round of chemo is complete. Havyn did great. We should be leaving the hospital momentarily.
A special thanks to Mamaw (Tammy’s mom) for helping with Arlington — who turns 1 tomorrow! Thanks, too, to Lauren for letting Henry and Amelia hang with you all day. You both are heroes to us.
Thanks to Catie and Mary Beth. You’ve walked this journey (and worse). Your wisdom and words of encouragement have been so beneficial.
And thanks to each of you for your continues prayers and warm wishes. It means a lot. James 5:16 says: Continue reading “And away we chemo…”
Havyn has grown restless. We’re out on an adventure. Should start chemo within the hour. Still plan to be out of here tonight. She is doing so well. She was pretty lethargic and grumpy today as she came off the anesthesia. But she’s back to Havyn now. She’s giggling a lot and her infectious joy is spreading to all of the staff. Thanks for your continued prayers!