Results: One-Year Scans

Caroline had her 1-year scans this week, and the CT Scan, MIBG Scan and lab markers all show NO EVIDENCE OF DISEASE!!!  To say we are beyond thankful is an understatement!  She will continue to take her DFMO clinical trial drug (to hopefully prevent relapse) for the next 13 months, and will be re-scanned in 6 months.  With the flu season and COVID-19, we're hoping she can remain healthy through the season.

We're so grateful to her medical team that helped get us here, and who continue to work hard every day for these families!  Also a huge shout to all the folks at BeatNb who are fighting so hard for these kids to be able to get access to DFMO, which shows amazing promise in battling this awful disease.

Be safe out there!
The Lantz Family

Caroline being injected with MIBG radioactive contrast.

We Love Vandy!

Audiology test - she is showing signs of mild hearing loss, so we will re-check in 3 months.

 Waiting...

CT Scan 

 #carolinestrong

 Peace out! Walking herself back to the MIBG Scan.

 Fresh, 3-month supply of DFMO.

Prayers for Finn's family / Caroline is home

Caroline was discharged on Saturday afternoon from her week-long inpatient stay for round 2 of Immunotherapy.  She is mostly sleeping/resting while she recovers at home this week, with a scheduled return visit Monday for an outpatient clinic visit. We expect her to progressively feel  better each day this week, and hopefully back to her lively self by next weekend. Thank you for all the support during this very challenging week!

Today, our thoughts and prayers are with our Vanderbilt "6A" friend Finn and his family.  Finn passed away this morning at 6:44am, after a long, hard battle with cancer.  We can't imagine anything worse for a parent than losing a child.  Unfortunately, there are literally no words we can offer to his family to help mend their shattered hearts.

Pediatric cancer is severely under-funded, which significantly limits research that can be done to find cures for these innocent children.  In Finn's honor, we are making a donation to a team we follow closely that is doing amazing work to research and find options for the fight against pediatric cancer.  If you would also like to donate, you can do so by clicking here.

Cancer sucks.

The Lantz Family
#carolinestrong
#ftgf

 Caroline's final visit with Finn - 11/11/18.

Home and resting with her BFF.

Week of Tests - Awaiting Results

Caroline has now completed her week of extensive testing at Vanderbilt Children's:

• MIBG Scan
• CT Scan
• Bone Marrow Biopsy
• Spinal X-Ray
• Hearing Test (good results - no hearing loss so far!)
• Clinic Appointments/labs/blood work

We are awaiting the results on all tests (except hearing), and anticipate getting the results early next week; we will update the blog as soon as we can.  Needless to say, we are very nervous/anxious for the results (her last round of scans was in April), but we are also optimistic and hopeful.  

Thank you ALL for the continued prayers and support!

The Lantz Family

#carolinestrong

#ftgf

CT Scan

X-Ray

Hearing Evaluation

Radioactive injection for MIBG scan

As usual...walking herself back to the OR for her MIBG scan and Biopsy!

Recovering from MIBG Scan and Biopsy sedation.

Chasing animals earlier in the week at Brett's Barn...we are so thankful for their kindness and the foundation's great work!  You can read more about it by clicking here.

A "REAL" Fall Break / Progress Scans and Tests Up Next...

Our October 2017 Fall Break was our best family vacation...until we were able to go back for an even better October 2018 vacation! Since her diagnosis 11 months ago (Nov 2017), Caroline has spent at least 130 overnights at Vanderbilt/Cincinnati, so this return to Seagrove Beach, FL was very much needed and appreciated by all.  It was the first time we all got to take a break together in a year!

We are very grateful to our cousin, Victoria, for allowing us to use her beautiful vacation home on 30A! Caroline’s only limitation at the beach was to not get her central Hickman line wet or sandy, which we successfully accomplished!  Aside from swimming, she was able to do all the other fun things that she would usually do at the beach.

Caroline has a busy and important upcoming week of outpatient appointments at Vanderbilt:

- two clinic visits for bloodwork labs and overall health

- X-rays to check the stability of her spinal compression fractures

- Audiology test to check impact of chemo on her hearing

- CT Scan

- Bone Marrow Biopsy

- MIBG Scan (requires radioactive injection 24 hours prior to the scan)

The scans and biopsy are all progress updates that will help her oncology team determine if there is any remaining evidence of Neuroblastoma.  Her last progress scans were prior to her surgery in April, so needless to say, this will be a very anxious week for mom and dad.   We really appreciate your prayers and good thoughts for positive test results. 

Feeling refreshed!
The Lantz Family
#carolinestrong
#ftgf 

CarolineSTRONG at the beach!

Central line wrapped up tight in an aquaguard and cling wrap...she said she felt like a mummy - LOL!

Sunrise on the beach!

Playing football in Seaside!

The first thing we did when we arrived was walk down to the beach and snap a family picture...we were so, so thankful to be able to take this break!

Information Overload: Prepping for High-Dose Chemo and Stem Cell Transplant

Today was a busy and tough day for all of us: back-to-back appointments from 8am-4pm, and a day full of listening to info that we're still processing hours later. We met with Caroline’s transplant team to discuss what’s on the horizon for the next week, sign consent forms, ask a laundry list of questions about the high-dose chemo/stem cell transplant (and the side effects), and get a general idea of what to expect during our extended stay.  Although we knew some information about high-dose chemo and the stem cell transplant process, this was the first time we heard it directly in relation to Caroline's treatment.  It's absolutely gut-wrenching to hear what she's about to endure.  The side effects of her forthcoming treatment are: mouth sores, mucositis (potentially through her entire GI tract), high fever, infection, liver and kidney issues, nausea, vomiting, diarrhea, loss of appetite, etc.  High-dose chemotherapy is similar to other 5 rounds of chemo she's had, only extremely amplified (hence the name and more extreme side effects).  We will post more info on Caroline's exact schedule later in the week, but as of now, she is scheduled to start the process on Monday, May 14th.     

Caroline's appointments today included:

• Kidney function testing, which included a radioactive injection, as well as 5 separate blood draws/tests, to ensure Caroline’s liver will be able to tolerate the high-dose chemo, and to what degree
• 2 urine tests 
• RVP Nasal Swab (test came back negative for viruses - yay!)
• EKG
• Echocardiogram
• Hearing Test (one of the many side effects of the chemo she's received is hearing loss...as of her check-up today, she does not have any hearing loss - another YAY!)
• Weekly Hickman line dressing change, including daily line flush

MORE Appointments this week:

Wednesday: 

- Liquid radioactive injection of MIBG for the MIBG Scan (requires 3 days of drops prior to protect Caroline's thyroid)

Thursday: 

- MIBG Scan (will tell us if/where/how much of her cancer remains)

- Bone Marrow Biopsy (at last check, her bone marrow was comprised of approximately 25% cancer cells...we are hoping for zero!)

***We will not know the results of either the scan or the biopsy for at least 24-48 hours***

Friday:

- Final appointment with the transplant team prior to admission on Monday

Please keep those prayers coming!  What we're about to face sounds like hell-on-earth, and so far, your thoughts, prayers, love, and support have gotten us through. 

Thank you, thank you!

The Lantz Family

#carolinestrong

#ftgf 

Early morning hospital visits require donuts!

Radioactive injection for kidney function test.

Dressing change (done weekly) and central line flush (done daily).

We were able to meet soldiers at lunch and thank them for their service!

EKG

Echocardiogram

Nurse Kate will be away during our extended stay - we will miss her - glad to get in some hugs!

Hearing Test!