Following our sweet Havyn and her journey with NF1
We had a great day in St. Louis today. Can I say again how much we love St. Louis Children’s Hospital? The doctors are fantastic, the facility is great, and the coordinated team approach has been super.
We started our morning with the ophthalmologist, Dr. Hoekel. He did a bunch of testing and gave us some great news! Continue reading “Two down, one to go…”
Like the Magi, we are traveling west! By the power of a wifi hotspot, we’re posting this while hurtling at 70mph (or maybe a bit faster, right Tammy?) somewhere in the middle of nowhere Illinois and we’ll be in St. Louis within an hour or so. For those of you new to Havyn’s Journey, St. Louis Children’s Hospital is a leader for caring for patients with NF-1. For the foreseeable future we’ll make this trip four times each year.
Over the next couple days Havyn will see: Continue reading “Westward Leading, Still Proceeding…”
First of all, a brief update. Havyn is doing well. She’s now in the “maintenance phase” of her chemo. What that means is that for the next 8 months or so, she gets chemo weekly for 4 weeks and then gets 2 weeks off. We enjoyed our recent 2 week break and got started back last week. Her counts have been good and she’s been a trooper as always.
She’s doing well with her “bones” (scoliosis brace) and her eye patch. We think the patching may be helping with her eyes. We don’t notice the wandering eye as often as we used to. We’re not as sure that the brace is helping as the curvature seems to be getting worse. We’ll know more on both front in mid-December. We head back to St. Louis to meet with her ophthalmologist and orthopedic surgeon. Around that time she’ll also get another MRI so we can see how her optic pathway glioma is doing.
But enough about the boring stuff… how about our little TV star? Continue reading “Havyn the TV Star”
Thanks for your prayers over the past week. Havyn’s ANC level is back up to 1000 so the break from chemo was just what the doctor ordered. 1000 is still low, but not dangerously so. As I type she’s watching Daniel Tiger and getting her chemo. She’s in great spirits as always. And after this she doesn’t have chemo again until November 8! It will be great to have a little break. She’ll still have to get some blood counts, but she won’t need her port accessed. Yippee!
We did learn today the results of her endocrinology labs they drew a few weeks ago. Continue reading “Good counts plus NF-1 info”
I’m pretty sure I didn’t know what it meant to be neutropenic until Havyn started chemo a few months back. According to the Mayo Clinic:
Neutropenia is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria.
And guess who’s neutropenic? That’s right… Continue reading “Vocabulary Lesson – Neutropenia”
Havyn is home! Because she was doing so well and her blood and urine cultures have been negative, they allowed Havyn to go home a bit ahead of schedule. They’ll keep watching the cultures for a few days, but hopefully we’re home until chemo on Tuesday!
We appreciate your continued prayers that she’d stay fever-free. But will you also join is in praying for a few people we’ve met? Continue reading “Home ahead of schedule!”
First of all, I’m not sure why our overnight post wasn’t automatically sent to subscribers. We’ll see if this one does! (WARNING: Adorable picture below!)
If you read that post, you know Havyn is in the hospital for a couple days. She’s having a GREAT morning. She was tired, combative and emotional last night. Today she’s back to being Havyn. Her fever is still hanging on but it’s down to about 100. The doctors still believe it’s probably viral but we have to stay here and wait on those cultures. It’s a remote possibility that she got an infection through her line during chemo yesterday. It looks like we’re here until Friday. Stir-crazy is in our future. If you’re in town and want to come visit, she may be up for that — it might help her pass the time. Call us first because we’re going to try to get her to take a nap for a bit today. Continue reading “A few decent-sized updates…”
I was fixing the washing machine and Tammy was washing dishes. It was pushing midnight. I heard Havyn crying a bit which isn’t too abnormal. I went in to check on her and the heat was radiating from her sweet little body. I was sure she had a fever but thought maybe she was just hot from her Santa Claus footy PJs (her favorite) and her thick Minnie Mouse blanket. But sure enough, the thermometer read 102. Continue reading “Another hospital stay…”
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”