Following our sweet Havyn and her journey with NF1
Just a quick update to let you know that Havyn is home and doing great! She has her new cast on and is sleeping soundly right now. She was exhausted after a long day at the hospital!
She has chemo in the morning and we hope to discuss the results of the MRI with the oncologist at that time. We’ll post anything we learn along with (hopefully) a photo of her with her new cast on.
It’s been a while since we’ve posted so I may try to cram a bit in this post. The brief version is that a couple weeks ago Havyn got her cast off. We took the family to Sevierville, TN and where we had some quality family time and Havyn got to swim to her heart’s content. Right now we’re in Cincinnati where she’s getting an MRI and a new cast.
If you want to hear more about our escapades and see a few photos, read on. Continue reading “It’s Time for Cast #2”
Havyn heads to St. Louis about every three months to see doctors at St. Louis Children’s Hospital. We started this about six months ago. Dr. Gutmann leads the NF Center here and they specialize in her genetic disorder, Neurofibromatosis Type 1. Overall we got great news this trip. Here’s the scoop: Continue reading “St. Louis Recap”
Havyn is home! No real word why she spiked a fever. They’ll continue to watch her blood cultures for the next 5 days, but she seems to be doing GREAT which is a complete reversal from a day ago.
Thanks to all the great nurses and doctors at Norton Childrens. No offense, but we hope that if we see you anytime soon it will be at Kroger.
Short version is that it’s Amelia’s 5th birthday and Havyn is back in the hospital. Continue reading “Back in the Hospital & Amelia’s Birthday!”
Havyn did so well! We arrived at the hospital at 9am and by 2pm we were on the road back home – after a “quick” stop at Ikea of course!
Havyn has been sedated 6-8 times for MRIs but this was our first time at Cincinnati Children’s. She did marvelously. Normally she gets a medicine called “versed” to make her loopy so she won’t fight the separation from us. But they wanted to try without it and she was amazing! She clutched tightly to her Peppa Pig toy and away she went! Continue reading “The Cast at Last!”
So tomorrow is the big day. Havyn is sleeping soundly right now. The short version is that we left Louisville this afternoon and are spending the night at a hotel in Florence (Y’all) so that she can enjoy another dip in a pool and so that we won’t have to subject her to a long car ride without food tomorrow.
That’s the brief headline. But a few hours ago it looked like we wouldn’t be heading to Cincy at all… Continue reading “‘Twas the Night Before Cast-mas…”
Havyn has had a very nice two-week break from her chemo treatments. It is really remarkable how much the chemo will beat her up. We are grateful that she doesn’t deal with nausea and hasn’t had significant hair loss, but she gets pretty grumpy after 4 weeks of chemo and she gets pretty “gaunt” looking. She has about 5-6 months left of chemo. We’re hoping it continue to hold those tumors back and that chemo will be a distant memory not long from now.
The big news is that we’re moving forward with casting. We haven’t posted much here about the drama and decision-making we’ve walked through. Continue reading “A cast, ye mateys!”
We got the results from Havyn’s MRI — STABLE!
This MRI was just of her brain, so it only shows her Optic Pathway Glioma and there has been no change to the tumor. That’s the goal of the chemo she’s on, so we’re thrilled with the results. We’d love to see an MRI with a smaller tumor (or none whatsoever) but we’re thankful for the good news.
We don’t know what’s going on for sure with the spinal tumor, but assuming it’s still stable as well. Her next MRI (March?) will include the spine as well.
Havyn started back to chemo today. She hates it… who can blame her!? But she did wonderfully. Her blood work came back great! A normal ANC (absolute neutrophil count) is 2000+ and she was at 4600 today! I don’t think we’ve ever seen it that high. The two weeks off was much needed since she was only 900 at the beginning of the break. Continue reading “GREAT counts and Linkin’ Bridge too!”