Cycle 2: Complete / #carolinestrong T-Shirts Available

Caroline completed Cycle 2 of immunotherapy today. Although she had some chest pain, itching and a mild rash during the infusion, the side effects were milder overall compared to the first cycle.

She will get the next few weeks "off" before her appointment on September 10th, which will consist of lab work and progress scans to see how/if this treatment is working. We're hopeful she'll be back to school next week and doing as many "normal" and "fun" things as her body allows.

For those interested, #carolinestrong shirts and hoodies are now available online (click here for the link); all proceeds will do directly towards Caroline's medical expenses.

We're so grateful for the ongoing love support and prayers for our family - it means so much!

Love,
The Lantz Family
#carolinestrong
#ftgf

Port / Biopsy / Cycle One

 A video message from Caroline:

Tomorrow is a big day...Caroline will go under anesthesia to have her central line (port) placed, get a bone marrow biopsy from her lower back, and then she will be admitted to the Oncology floor at Vanderbilt Children's Hospital to begin her first cycle of chemotherapy.

A recap of the cycles: 2 chemo drugs + 1 antibody drug while inpatient over 5 nights/6 days, home to recover for two weeks – including daily shots to recover her immune system, then repeat again.

Please pray that her body responds to this therapy, and that it immediately starts to kill off the cancer cells in her body!

Many thanks for all the prayers, outreach, love, and support...it's go time!

The Lantz Family
#carolinestrong

#ftgf

***T-Shirts are almost ready…we will post the link as soon as we have it. If you’d like to help in the meantime, here are a couple links:

American Red Cross Blood Donation
Caroline's Hospital Wishlist
Medical Expenses via GoFundMe
Family Meals via UberEats Gift Cards (sent to margaretlantz@gmail.com)

A huge “thank you” to those that have sent Caroline gifts…many arrived without the sender's name, but we are so grateful!

Photo Credit: SK!

6-Month Scan Results

Caroline just completed 3 days of testing, which concluded today with a CT Scan and an MIBG Scan.  The results show that she still has NO EVIDENCE OF DISEASE at the 6-month mark.  She will continue to take her 6 daily pills of the DFMO clinical trail, and then return for a 3-month check-up towards the end of the year.

Thank you for your steadfast support and prayers through this long, long journey!

The Lantz Family
#carolinestrong

#ftgf

A special video message from Caroline!

Giving Back - Help Caroline's Team WIN!!!

Hello friends and family!

Caroline is back in school, playing YMCA soccer, starting Daisy Scouts, faithfully cheering on her brother (who is playing multiple sports!), and overall doing well.  Her next round of progress scans are scheduled for early October; we will update the blog with results.

With standard treatment behind us, our family has spent a lot of our free time giving back to the pediatric oncology community, and especially at Vanderbilt.  Most recently, Caroline was asked to participate in the Rascal Flatts Celebrity Golf Classic!  Please join us in donating to Team Caroline & Levi for Vanderbilt’s fundraising drive.  Let’s beat the other team and win this one!

Click here to DONATE!

Thank you for supporting our family, and pediatric cancer research/awareness!

The Lantz Family
#carolinestrong
#ftgf

HOME!

Caroline was discharged from Vanderbilt tonight and is already feeling MUCH better!  She will be on an oral antibiotic for 12 days, but other than that, she has no restrictions and can get back to enjoying the rest of her summer.

Thank you for all the prayers!

The Lantz Family
#carolinestrong
#ftgf

Bacterial Infection / Hospital Admission

After complaining of a headache on Friday night, and waking up in rough shape Saturday morning (vomiting, chills, leg and stomach pain, high fever) we visited the Williamson Medical Center ER, which is only 2 miles from our home. They quickly ran nose/throat swabs and urine/blood tests, but nothing showed up on those initial results, so we were sent home on an antibiotic as a precautionary measure.

Overnight in the hospital lab, a bacteria rapidly grew in the blood culture they took at Williamson, so they called us Sunday morning to report that occurrence, and asked us to go to the Vanderbilt ER ASAP.

After a visit with the doctors, and some more testing, Caroline was admitted to Vanderbilt Floor 6A today for an infection in her bloodstream. We aren't sure how or when she contracted it, but it can be very dangerous for someone with a (still) suppressed immune system.

She has already started a different IV antibiotic that she will receive twice a day while inpatient, and then hopefully move to oral antibiotics later this week. Caroline is already feeling and looking better than she did yesterday, so we are glad both Williamson and Vanderbilt were aggressive and persistent with their testing, follow-up and diagnosis.

We will update the blog as she progresses but we are hoping this is a short 2 day stay.

We appreciate all of the prayers and support! Things can always be worse, so we try and put all of these setbacks in perspective even though it’s frustrating and inconvenient to a “normal” life that we want for her, and the family plans we had for the weekend!

Always Fighting,
The Lantz Family
#carolinestrong
#ftgf

Results: 3 Month Progress Scans Today

Caroline had her 3 month post-treatment progress CT and MIBG scans today at Vanderbilt, and we can happily report that she still has No Evidence of Disease!  Both scans showed no signs of any tumors, so we will continue on the current path of daily doses of DFMO (clinical trial drug), to hopefully keep the cancer away!

Caroline will have monthly blood and urine work at Vandy, and then is due back for another round of progress scans in October.

Thank you for all the support!

The Lantz Family
#carolinestrong
#ftgf

Caroline Clinical Update / Vanderbilt Ambassador

Caroline had 2 visits to Vanderbilt in the last 3 days. On Friday, she had a scheduled monthly clinical visit, and today, she visited as an Ambassador of the hospital to help open the brand new 10th Floor!

Clinical Update - All of her blood tests and urine makers (can aid in early detection of a relapse) looked great, and the doctors are happy with her current level of health. She will return to Vanderbilt in July for her 3-month post-treatment MIBG and CT scans, as well as a full day of labs and clinical testing.

Giving Back - She always has a fun time representing Vanderbilt in any way she can!  Caroline was able to tell her story, and tour the new floor, which will take care of young patients just like her for many years to come.  The video she worked on today should be published in the fall and we will certainly share when available. We are very grateful to the Carell family for being so generous and supportive of Monroe Carell Jr. Children's Hospital at Vanderbilt, as well as all of the other donors that made the expansion possible.  It's a true blessing to have access to the kind of care that saves lives so close to home!

Much Love,
The Lantz Family

#carolinestrong

#ftgf

Clinical Trial Update

Caroline has officially completed her first month on the DFMO clinical trial drug, which is hopefully going to significantly reduce the risk of a relapse.  She had a clinic appointment this morning, and her labs looked great!

It's been a really fun month for Caroline to be a "normal" kid, and for us to spend a lot of time together doing things we haven't been able to do as a family in the past 19 months.  Some highlights include:

- getting to go to "real" school and ride the bus...even go on her first field trip
- losing (another) front tooth
- taking swimming lessons and being able to get back into the pool
- visiting the "American Girl" doll store for the first time
- being able to finally go into a movie theater (she saw "Penguins")
- Going to Andrew's baseball games
- 3 Easter egg hunts
- Preds Playoff Game
- Franklin Main Street Festival
- Play dates and the park with friends
- Walking as an ALUMNI in the Rally on the Runway Event, where she was interviewed and created original artwork that raised $7,500 for the foundation!

Other than one day in the ER after catching a virus 2 weeks ago, we've really had an awesome month.  Her hair is growing back quickly, and relative to what she's been through, the 6 DFMO pills per day that she needs to take is not a big deal for her. 

Assuming all goes well, Caroline will go back to clinic in a month for a check-up!  It's a surreal feeling to be on the other side of that daunting and devastating treatment, but it makes us so grateful for each day.  We feel so thankful, blessed, relieved, and happy to be able to look ahead. 

Thank you for the love, support and prayers!
The Lantz Family
#carolinestrong
#ftgf

Rally on the Runway 2019 - Holding up her 2018 Rally Card

Field Day at school

Easter 2019

Final Week of Standard Treatment / "Scanxiety"

Caroline is finishing up the last few days of her 6th Round of Immunotherapy...the final round of "Standard Treatment Protocol" for Stage 4, High-Risk Neuroblastoma. It has taken 17 LONG months to get here. She will take her final dose of oral medication on Wednesday evening, right before bedtime, and then get ready for a long day of testing on Thursday.

Busy week ahead!

• Wednesday: MIBG Radioactive Injection, EKG, Hearing Test, Clinic Visit/Labs
• Thursday: Sedated for hours to complete a CT Scan, MIBG Scan and a Bilateral Bone Marrow Biopsy
• Friday: Clinic visit to find our scan test results and consult with Caroline's medical team to determine next steps. 

Since Caroline's diagnosis, our family has learned to live with a heightened sense of "anxiety" on a regular basis.  However, this week in particular, we are all beyond anxious.  It's been dubbed "scanxiety," and it's definitely a REAL thing.  We are asking for specific prayers for some sense of peace, a safe round of test prep/tests, and of course a NED (no evidence of disease) report on Friday!

We will post an update on this blog as soon as we can.

Thank you for your continued prayers and support; you all have really pushed us along this journey!
The Lantz Family
#carolinestrong
#ftgf

First time back in a pool since 2017!

Predators 365 Foundation / Clinic Update

Caroline had a weekly clinic visit today for blood work and an overall check up.  Her numbers were mostly good, but her ANC keeps dropping, and is a little lower then we would like at this point.  The low number could be registering because of a common cold, or even side effects of the oral medications she is currently taking as the last portion of Round 5 (of 6) of Immunotherapy.  For now she will continue weekly check-ups until her progress scans are scheduled in mid April.

We want to say thank you to Pekka Rinne, The Nashville Predators, and Vanderbilt Children's Hospital, for always doing so much to support children who are in treatment!  We got to attend a Preds game last night in one of the suites sponsored by Pekka Rinne...who helped with an awesome Preds win in an OT shootout!  After the game, we were invited to go down to the locker room area and meet with some players.  It was so awesome to be able to congratulate and thank them for all they do for the community!  We are very grateful that they take the time to give back so graciously, especially after every one of these physically exhausting NHL games!

Chugging ahead,
The Lantz Family
#carolinestrong
#ftgf

 GO PREDS!

 Superstar Goalie - Pekka Rinne!

Fun visit with Ms. Kristen and Ms. Rhonda

HUGE Day

Monumental steps today!

Caroline was discharged today after finishing her 5th cycle (of 6) of Antibody Immunotherapy!  This was her last inpatient round of treatment...hopefully forever.  She also had surgery this morning to remove her Double-Lumen Hickman Central Line (heart bandage below in picture is where her line was connected).  She's had a central line since November 30, 2017, so this is really exciting - she will finally be able to shower and swim again soon!  This procedure was moved up a week, after they discovered a small hole in one of the lines over the weekend.  Because Caroline received her last dose of intravenous chemo treatment this round, and will hopefully no longer need a central line, they went ahead and removed it while we were still admitted today, instead of repairing it, or having her come back next week to get it removed.

Remaining treatment protocol timeline as follows:

• Weekly outpatient Vanderbilt clinic visits for blood work/labs and check-ups
• Cycle 6 (an final) of Immunotherapy in March (oral medication at home)
• End of treatment CT and MIBG scans in mid-April 
• DFMO clinical trial drug for 2 years (assuming No Evidence of Disease at end of treatment scan)

Huge shout out to the incredible staff at Vanderbilt Children's Hospital, who have been so amazing to Caroline and our family throughout this process of inpatient stays.  We appreciate all of you more than words can ever adequately express, and we are very grateful that we chose to stay local for her treatment plan.  Many thanks to Dr. Maggie (surgeon) for taking such awesome care of Caroline today, on what we hope will be her final operation/procedure!

We will continue to keep the blog updated as we have new information or treatment results.

Tired, but happy and hopeful!

The Lantz Family

#carolinestrong

#ftgf

                                                     

Loading up car to come home from Vandy (hopefully the last time)

Heart bandage over Hickman line scar

Walking back from surgery

Pop-Pop heading home

Visit from 6A BFF Molly 

Vanderbilt Admission - Immunotherapy Round 5

Caroline was admitted this evening for Round 5 (of 6) of Immunotherapy. We are hopeful this will be her LAST inpatient admission for cancer treatment; her next round of Immunotherapy will take place at home (oral medication).  She will begin antibody therapy tomorrow morning, as well as get on a Dilaudid PCA 24/7 for pain management (pain is caused by the anti-body drug, Unituxin). We expect all the same side effects this round, as in the previous 4 rounds: high fever, extreme nerve pain, rash, loss of appetite, low oxygen levels, low blood pressure, nausea, diarrhea, etc.  It will be a rough little stretch, but we hope and pray it’s doing everything to get her to an NED (no evidence of disease) scan in April.

For those that have asked about #carolinestrong shirts, there is a batch going to print in 2 days: click here for the link.

As always, many thanks for the prayers and support!
The Lantz Family
#carolinestrong
#ftgf

HUGE thank you to Michelle Prichard for the awesome door sign and room decorations...she's decorated every.single.room for ALL of Caroline's inpatient stays!

Home...again...

Caroline has been able to remain fever-free for 24 hours, and her blood cultures showed no growth for anything specific, so she was able to be discharged today.  The IV antibiotics for 48 hours helped significantly, and we are all glad to be together, home, and hopefully able to catch up on rest!

Thanks for you for always keeping us in your prayers,
The Lantz Family
#carolinestrong
#ftgf

Good luck tonight, Preds!

Admitted to Vandy for High Fever

After an unplanned visit to the outpatient clinic at Vanderbilt yesterday for high fever (103.7), we found ourselves back there again today.  Caroline's fever failed to break overnight, after 24 hours of Tylenol, and she was looking/feeling worse this morning, so we returned to clinic today for more tests.  After consulting with her medical team, and based on her risk factors, they decided that she needed to be admitted for at least 48 hours.  So far, they have tested for (and ruled out) the flu and strep, but they proactively put her on an IV antibiotic.  They will monitor her counts and fever over the next couple of days, and we are hoping that she can improve quickly and get home for the weekend!  Although this isn't really where we want to be, with her compromised immune system, it is better to play it safe than sorry, and make sure she isn't at risk of seizure or other issues that can accompany a high fever and virus.

So, tonight, we will spend another night eating dinner together as a family, on a plastic couch in a hospital room on 6A.  There really are no routine or easy days for us right now (Dad, Mom & C), and we know how hard this must be on Andrew.  We hate that he has to go through all the back and forth and uncertainty that has become our lives.  We hope he one day understands...and maybe one day we will understand all of this, too.

We will keep the blog updated as things progress this week.

Thanks for hanging in there with us along the long, long way.

The Lantz Family

#carolinestrong

#ftgf

Back Home!

Caroline was discharged from Vanderbilt today, after completing Part 2 of Round 4 of inpatient Immunotherapy treatment.  Other than some clinic appointments, she will now will have about 3 weeks to rest at home before going back inpatient for Round 5 of Immunotherapy.  She is doing well so far, and is weaning off pain meds, which are currently taken orally every 4 hours for stomach and leg pain (common side effect from the antibody infusion).  So far, there are no other visible side effects lingering from the weekend...prayers up and fingers crossed that this remains the case!!!

During Round 4 of Immunotherapy, she was able to get nearly 100% of the cancer-fighting antibody drug, Unituxin, and about 50% of the immune system booster infusion, IL-2.  Unfortunately, the combination of both drugs together was just too much on her body for all 4 days, so her team (including us) decided it was best to continue with just the antibody (Unituxin), and discontinue the IL-2, which is considered a lesser priority drug for this round.  This adjustment/discontinuation is not uncommon this late into immunotherapy; their bodies are weak and worn from 14 months of toxic treatment.  It was a hard decision, and not taken lightly, but luckily, her blood counts remained ok throughout the stay, and we were pleased with their explanation and quick reaction to adjust this round's protocol.

It's been a stressful, draining and exhausting couple of weeks, and we are all looking forward to spending quality family time together - under one roof - over the next few weeks!

THANK YOU for all the continued support and prayers!
The Lantz Family
#carolinestrong
#ftgf

Packed up and heading out of 6A, with assistance from Mr. Seth! 

Round 4 Immunotherapy: Half-time!

Caroline is now home for a 48-hour planned break in between treatments for Round 4 of Immunotherapy.  She is resting comfortably after a relatively uneventful 5 day admission for the IL-2 infusion.  Her only notable side effects from Part 1 of this round were fever and diarrhea, which aren't bad, considering what she will be facing later this week during Unituxin/IL-2 combination infusion.

She will get re-admitted on Wednesday, and most likely need a blood transfusion before she starts Part 2 of Round 4 on Thursday morning, as a result of low hemoglobin levels.  Expected side effects once the tandem infusion begins are: extremely high fever, severe nerve pain (and generalized pain), itching, intense irritability/mood swings, low oxygen levels, diarrhea, nausea and loss of appetite.  We have gone through this tandem infusion round before (around Thanksgiving), and it truly is beyond hard and stressful to watch her body endure this much.

Please pray for her comfort during the remaining part of Round 4, as well as for the rest of our family as we watch her go through one of the worst weeks of her entire treatment protocol.

Thank you for your continued love and support these past 14 months; we're so grateful!
The Lantz Family
#carolinestrong
#ftgf

Round 4 Immunotherapy - Inpatient Admission

After enjoying a couple weeks of "normalcy" at home, Caroline was admitted to the 6A-floor at Vanderbilt this evening for Part 1 (of 2) of Round 4 (of 6) of Immunotherapy treatment.  Treatment will begin in the morning, and she will be once again be on various drugs for nerve pain and nausea throughout the stay.

Assuming no set backs, and all goes as planned, her next 2 weeks will look like this:

• 5 night inpatient stay for IL-2 Drug (which is used to stimulate the body's immune system)
• 2 night break (rest at home!)
• 5 night inpatient stay for combination of IL-2 Drug and Unituxin Antibody (drug used to target Neuroblastoma cells) 

We expect a very difficult upcoming couple of weeks for Caroline...her body is really worn down and tired from the last 14 months of super intense treatment.  Please pray for her comfort, and for minimal side effects over the next 2 weeks.

Thank you for all the support!!!
The Lantz Family
#ftgf 

#carolinestrong

Home / Next Steps

Caroline experienced significant improvement overnight with her oxygen levels, and her lungs were clear when she woke up, so we were able to be discharged this afternoon.  The year is already off to a great start!

Next steps: Caroline has clinic appointments, daily shots and numerous oral medications between now and her next admission for Round 4 of Immunotherapy, which is scheduled for mid-January.  As always, we will keep you posted on this blog.  Thank you so, so much for the continued thoughts and prayers.  Happy 2019!

The Lantz Family
#carolinestrong
#ftgf

Still Inpatient / NYE 2018-9

We are ending 2018 where we started it: on 6A...the pediatric oncology wing at Vanderbilt Children's Hospital. Although we certainly would rather be at home, we are glad Caroline is getting the care she needs from the amazingly compassionate team here.  We are very grateful for all they have done for our family this year!

As of this morning, Caroline has successfully completed Round 3 of Immunotherapy. She is still dealing with the nasty cough/congestion viral sickness that is going around, and as a result, her oxygen levels are not where they need to be for a safe hospital discharge today. Her right lung has a little fluid so they will continue to monitor that overnight and if she still has trouble maintaining oxygen levels in room air, they will X-ray her chest again in the morning and re-evaluate.

Wishing all of our family and friends a blessed and Happy New Year - please be safe!

Caroline will still be able to celebrate NYE with her 2019 glasses and party blowers when she wakes up from her late nap!

The Lantz Family
#carolinestrong
#ftgf