Francesca Starts the Clinical Trial

 Since I know we have followers on here and across other social media platforms, I wanted to share the updates I posted about the clinical trial on Facebook. It was a challenging week, but Francesca was a rock star and I am so, so proud of her. I am home for a couple days and then heading back Sunday night for the week, with Amelia. 

Clinical Trial Diaries - Day 1: Francesca was a rockstar. We left Williamston at 6:30 a.m. and she was not impressed - her exact words were “oh man, it’s not even morning time yet.” Things kicked off at 8 a.m.:

• vitals
• blood draw
• ecg
• neuro exam
• a feel and function test
• eye exam

It wasn’t all work. We had a great tour of the hospital and found a lot of great superheroes who are almost as amazing as our Galacto Girl! The only meltdown was when we got back to the hotel and she was so frustrated about not being able to see because of getting her eyes dilated. 

I am in awe of my girl. She was full of smiles all day, rolled with some unexpected bumps and is still smiling while we watch a movie before bed. Tomorrow will be another long day - including a 90 minute MRI. Please keep the prayers coming. I definitely felt them today! And we appreciate all the messages we received. Love you all. 

Clinical Trial Diaries - Day 2: Today started out promising and is ending okay but the middle was rough. Francesca rocked her speech and language assessment and was amazing for the MRI. She had to lay still for an hour - I don’t know a lot of adults who could do it, but she was great. We got back to the hotel around 2 and Francesca was so excited to go swimming. But she thought the water was super cold and that made her sad. I think she was mostly crying because she was frustrated with herself for being too cold but still wanting to swim. She just sat on the window ledge behind the curtains in our hotel room and sobbed. Then I got a call from the doctor. It turns out Francesca has a UTI - which they found from the urine analysis they did. She is not complaining and doesn’t have any symptoms. It’s a long, boring story but ultimately the plan is to still give her the first dose of the trial drug tomorrow but then also start her on an antibiotic. Then she won’t take the trial drug again until after she’s done with the antibiotics. It’s the best course of action to treat the infection but make sure she is officially enrolled in the trial. Soooo after that news she really wanted to try the pool again. And she did great! We’ll be heading back to the hospital at 6:30 tomorrow morning. She’ll have to fast for a few hours in the morning which will be tough and she’ll receive the first does of the medication. Then it will be a long day of getting labs every 2 hours, until around 8 p.m. tomorrow night. Thanks for the continued love and support of our #galactogirls. 

Clinical Trial Diaries - Day 3: It was a long and uneventful but emotional day. Francesca got her first dose of the medicine (or placebo) at 7:40 this morning. A few hours later she started her antibiotic for the UTI. By the afternoon she was just over it. We both were. We left the hospital at 8 p.m. and returned to the hotel to the most thoughtful gift. Sara Armstrong had dropped off a gift basket with balloons from her daughter (Francesca’s friend), Wesley. As a side note, one of the things I always dreaded/worried about was sending Francesca to birthday parties because of her dietary restrictions. The first friend birthday party I allowed her to go to was Wesley’s. I remember feeling bad/like an inconvenience when I talked to Sara - but she was amazing and I knew our girl was in good hands. I appreciate you, Sara! It quickly went from a terrible day to the best day ever. (It was also helped by opening her “brave bag” from Dawn and family.) Because she’s not getting any more trial medicine until she’s done with the antibiotic, tomorrow’s visit will be quick and we hope to be home by lunchtime! Chris will take her Tuesday to her pediatrician for a urine recheck and if everything looks good she should start receiving the trial drug later next week. I can’t believe our brave girl will be 7 tomorrow. I am so blessed to be her mama.

Clinical Trial Diaries - Day 4: It was a quick visit this morning with a blood draw and visit from the doctor. The only pic I took was after coming out of the bathroom to find her across the hall in the office with the doctor and Jackie, the coordinator who had been amazing to us this week! We were home by 9 a.m. and she received the best birthday surprise - a loft bed made by Uncle Andy! I am so proud of this kid. It was not an easy week, but she did it (most of it anyway) with a smile on her face. And she’s been telling Amelia about all the things she can expect next week. Happy Birthday to the OG #GalactoGirl.