Wednesday, June 17, 2020

Results: 15-Month Check-Up

Last week, Caroline had her 15-month check-up at Monroe Carell Jr. Children’s Hospital at Vanderbilt. The immediate results of her numerous blood draw labs were just within average range, some slightly below, so we were anxiously awaiting the targeted Neuroblastoma urine tests (called HVA and VMA), which are typically the first indicator of a relapse.  These two test results always take a few extra days longer to come back, which is always so hard on us as nervous parents.  After a long weekend of waiting, we got the news this that both tests are in the normal range!  This is a great sign that there is still no evidence of Neuroblastoma in her body!  As you can imagine, we are very relieved, and so happy for her!

Real talk: we (Mark and Margaret) are really struggling with PTSD.  It's hard to return to “normal” when your life was obliterated by cancer; there is no going back to "normal."  So much of our life still revolves around the ripple effects of Caroline's diagnosis, treatment, current clinical trial and future hospital appointments.  We are doing our best to move forward every day, but we often find ourselves struggling mentally now more than when she was actually in treatment at the hospital.  During that time, our minds were on high alert and in "attack" mode - they were not fully processing what was happening.  Now we have the luxury of some time to think and process.  Cancer is never “over” or “behind us." We seem to actually suffer more now from “scanxiety” in the weeks leading up to her appointments, as well as some time after...even when the results are great news...than when she was in the thick of it.  So, next up in September, Caroline will get a CT Scan, MIBG scan, blood work, hearing tests, EKG, echocardiogram and more targeted urine tests.  

Thank you for all the continued prayers, love and support!  It really does mean everything to us - as they say,  it "takes a village.” 


Caroline is still on the clinical trial (called DFMO) that requires her to take 6 pills daily.  Funded by BeatNb.org, the DFMO team is diligently and quite literally trying to find a cure for cancer; their work is groundbreaking.  BeatNb sent out an email today where Caroline is featured in the lab with Dr. Sholler, one of the leading Neuroblastoma doctors in the country.  This picture was taken during a trip to see her last summer, and Caroline was actually looking at live Neuroblastoma cells!  We pulled the below directly from the recent email...the facts are mind-blowing: 

New paper published shows encouraging results for DFMO treatment


DFMO is a treatment we hope stops kids with high risk neuroblastoma from relapsing, which we've helped fund clinical trials around for several years. A paper was recently published continuing to show encouraging results - you can read our full post here looking at the results. Here's the striking numbers:

Give this oral drug (with minimal side effects) to kids, and 5 years later? 
95 kids out of every 100 is still alive.

Don't give them this drug? 14 of those 95 kids will instead be dead.

Give this oral drug (with minimal side effects) to kids, and 5 years later? 
85 kids out of every 100 is still in remission.

Don't give this drug? 
20 of those 85 kids will have relapsed.

We're working to get DFMO approved so all patients have access to it.

We still have work to do. At Beat Nb, we're working to make sure that EVERY kid with a cancer diagnosis gets a promise of "we know how to beat this." Thank you for helping make this a reality. 

Click here To Donate to BeatNb


Wishing everyone all the best!
The Lantz Family

6 comments:

  1. Thanking God for this glorious news and so appreciate you sharing your hearts. Lifting you up in prayer.

    ReplyDelete
  2. Thank you so much for the update!! What wonderful news! Please be kind to yourselves and allow yourselves much grace. I’m hoping there is a support group or therapist you guys are utilizing. I cannot imagine what life has been since the initial diagnosis. Many prayers and much love to you all!!

    ReplyDelete
  3. Wonderful, wonderful news about Caroline. So much you all have gone through. Always know there are many you can reach out to share your joys and comfort your fears.

    ReplyDelete
  4. Wonderful news about your beautiful Caroline! Your “real talk” puts my feelings exactly into words! Our daughter was diagnosed with Stage 1 Nb at 21 months old and we live this anxious life as you do! Thanks for sharing your thoughts and your joyful news!

    ReplyDelete
  5. Amazing news! My daughter is also a stage IV HR Neuroblastoma warrior. She is just about to 15 months on DFMO. We go for scans next month. Your words are all so true. The PTSD is so real. Sending you a the best!

    ReplyDelete
  6. Thanks for the update. Love to read next one. Waiting. Keep me in your list, please.

    David
    Editor, Home Holdz

    ReplyDelete