Sunday, October 1, 2023

Updates: Scans, Charlotte/Clinical Trial, Hearing Loss and "Regular" Life

It's been a busy 3 months since we last updated the blog; Caroline has lived a lot of life!

Starting with the best news, her most recent scans last week continued to show NO evidence of disease!  

Caroline has been on the high-dose DFMO clinical trial drug since the end of June, and has overall been able to tolerate it well.  She's required to get monthly lab work at Vanderbilt for monitoring; each time showing her hemoglobin number trending downward...a common side effect for DFMO.  She got sick (common cold) a few weeks ago, and required a hospital visit and a blood transfusion because her hemoglobin was below the threshold.  She also recently started struggling with her hearing, another common side effect of high-dose DFMO.  In the past 3 months, Caroline actually lost about 50% of her hearing from baseline.  After discussing the impact of side effects with her clinical trial oncology team at Levine Children's Hospital, they've reduced her daily dose by 2 she's now taking "just" 20 pills per day.  She is being fitted for hearing aids this week, and we will re-check her hearing in a month to re-assess.  We are hoping the hearing loss is temporary while on the trial drug, but there is no guarantee either way. Unless otherwise needed, her next scheduled scans at Vanderbilt and visit to Levine Children's will be towards the end of December.  In the meantime, she will continued to be monitored monthly with lab work.

Outside of the medical updates, Caroline has really being thriving!  She turned 10 in July, celebrating the milestone with all of her cousins in Maryland.  A few weeks later, she received an amazing carnival celebration from the Dreams & Wishes Foundation.  Caroline had the best time, and the party truly left us speechless.  Soccer started in August, and she's really found her niche as the goalie (aka "Keeper")...most games resulting in a shut out!  A local news reporter, Forrest Sanders, did a story featuring Caroline's Dreams & Wishes Party, as well as her playing soccer: click here to watch the video!  She's doing well in school, experimenting with with a slime business and hanging out with friends.  

As for the rest of our family, we're finding our footing and falling back into as much of a "normal" life as possible.  Thank you for the continued prayers and support...we're so grateful.

The Lantz Family

3-months post-treatment PET Scan = NED!!!

10th Birthday Party in MD with cousins

Birthday Girls! 
(birthdays one week apart)

Dreams & Wishes Party

Caroline leading Buddy the miniature horse during the Franklin Polo Match benefitting Angel Heart Farm

Luke Bryan Concert

"Slime Time with Caroline" at the Green Hills Park Children's Market

Nona & Papa marking "carolinestrong" on the Route 66 Cadillac Ranch Art Install

Mark's 50th!

Legal driver - pray for us!

We love Vanderbilt!