Following our sweet Havyn and her journey with NF1
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!”
So amazing how God allows peoples paths to cross in perfect God timing! Blows me away every time. After chemo on Tuesday, Havyn and I went to Thortons to get her “after chemo slushie!” (Thanks Amanda for the slushie gift card!) I almost took her home before my chiropractor appointment, but she was excited that mommy had to go see the dr and not her. I have had some back pain for about a month and just now getting around to making an appointment. Just so happened that at 4 pm I would be at Dr.Drews office getting adjusted at the same time that Santa Claus and Mrs. Clause would be there getting adjusted too. Dr.Drew (shout out to the best chiropractor in the world. He is at Louisville Health Solutions. Go check him out!!! http://louisvillehealthsolutions.com/) knocks on the door and says, “Havyn, I have a special visitor for you.” Low and behold here comes Santa Claus. Her face, ya’ll!!!! PRICELESS!!! My phone had no more space for pics but thankfully, Santa handed me his phone and said here take pictures and email them to yourself. You don’t understand, unless you have met this Santa, how special he is!!! Ya’ll, he and his sweet wife are filled with the Holy Spirit! Full of JOY!!!
As he held onto Havyn he shared his story of loosing 2 daughters in a car accident in 1989. Watch this video and grab your tissue box!!! It is unbelievable!!! After seeing this you will know why he is the real deal!
http://www.wave3.com/story/30741033/ghost-of-christmas-past-doesnt-haunt-santa-walt
Can I tell you how incredible this Havyn is? She is a rock star! She takes chemo like a champ!!! (Insert, God is amazing!) Her counts are still dropping, but was high enough to get chemo today! (ANC 1200, Hemoglobin 8.3) Praise God!
We are at OMO (Nortons Hospital) today instead of HEM/ONC. Here we have a private room with bathroom and bed, free parking and lunch served. Chicken fingers, mac and cheese and mashed potatoes with vanilla pudding for desert. The mac and cheese and pudding was a hit! Kind of nice!! We do miss the community at HEM/ONC though. So we will more than likely do chemo there after her 3 week break. She has chemo again on Jan 31. A much welcomed break ahead of us!! At this point in time we have about 20 chemo treatments left!!!
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.
Nothing like a 6 am MRI to celebrate the beginning of 2017! It’s amazing how well Havyn does with these. She has graduated from having the yucky medicine (Versed — pronounced: verse-ED) shot up her nose to now actually drinking it. This makes MRI’s so much easier. The Versed makes her really loopy and kind of drunk. It helps take her mind off of getting the IV and with separation anxiety. We do the meds via IV and not her port because of the risk of infection. The more her port is accessed the higher risk of her getting an infection. Continue reading “An MRI to welcome in 2017”
Well, thankfully we dodged a hospital visit last week. After chemo last week Havyn ran a low grade fever and ended the day throwing up. (All over her brand new Christmas PJs and my new bed spread, but thats besides the point. Deep Breath.) Called the Dr. and We took her temp all through the night and she was borderline for about a day. Then she was fine. Praise God.
Today her counts are dropping, but good enough to get chemo. She is getting better and better at getting her finger stick for blood work and her port accessed. She will say, ” I just cried a little bit, I didn’t freak out!” Continue reading “Chemo Tuesday with Special Visitors”