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

Admission for Round 3 of Immunotherapy / Christmas Joy

Caroline was admitted today for Round 3 of Immunotherapy.  Starting tomorrow morning, she will receive a 20-hour per day infusion of Unituxin Antibody, as well as a Dilaudid PCA for pain management during the entire treatment, which is scheduled to end on Monday.  Once again, we expect significant side effects, including: high fever, low oxygen levels, extreme nerve pain, nausea, diarrhea, rash and low blood pressure.  Watching her go through this part of treatment is not easy for us, but we hope it's all working to destroy the remaining Neuroblastoma tumor in her abdomen, as well as any free-floating cancer cells.

Like many folks this time of year, Caroline is fighting off some kind of virus, with a particularly bad-sounding cough.  Being immuno-suppressed makes it more difficult for her to fight any type of virus, so the medical team will be keeping an extra eye on her cough/congestion this week.

Caroline is on her last day of the antibiotic she's been taking 4x/day for the last 3 weeks for her C-Diff infection; she will be retested for C-Diff again later this week.

Last year we spent Christmas in the hospital, and this year we were fortunate enough to be able to spend it quietly at home.  Huge shout-out to our friend, Farrah and her "Friends of Caroline," who helped us coordinate gifting Christmas cash to all 19 Pediatric Oncology families that spent Christmas Day in the hospital.  We are very grateful for their generous hearts, and we know first-hand that many of the families were overcome with joy when those cards and blessings were delivered to their hospital rooms on Christmas day!  We hope we can build on this as one of the ways we give back, and make it an annual tradition.

Thank you for all the prayers and Christmas wishes sent our way; we truly appreciate each and every one of you!

The Lantz Family
#carolinestrong
#ftgf

PS: As you can see in the pics below, Caroline had a fun Christmas week of play dates with her friends and family!

Recovering / Break Until Dec. 26th

Caroline is finally recovering from a very challenging late November and early December.  She is starting to eat better, and is getting her energy back a little bit more each day.  She is still on a 4x/day antibiotic medication for her intestinal infection, which will hopefully get resolved by her next admission.

Thankfully, she has still been able to enjoy some fun holiday activities this week: baking with friends, a fun visit with Santa, a drive-thru Christmas lights display, making gingerbread houses while on FaceTime with her Baltimore family, a playdate in the yard, and some long overdue homeschool work with Ms. Elise!  Caroline was super excited that her hair has grown out just long enough to clip in a bow!  When she was first diagnosed and started losing her hair, she wanted us to hide all of her bows because she said it made her sad to see them...but this week she pulled them all out and has been having fun trying them all on again!

Although we are both still feeling a heightened sense of anxiety right now, we are extra grateful for this time at home with family.  Barring any setbacks, we should be home until December 26th, when she's scheduled to be admitted for Round 3 of Immunotherapy.

Thank you for keeping our family in your prayers this Holiday Season!

Merry Christmas!

The Lantz Family
#carolinestrong
#ftgf

C Diff / Caroline's Story

Caroline has had an especially hard time bouncing back from Round 2 of Immunotherapy.  In addition to recovering from the numerous side effects, she ended up getting C Diff (again, or maybe it never went away?).  She spent Monday, Tuesday and Wednesday at the clinic for labs/panel tests, an x-ray, and lots and lots of fluids.  The C Diff medicine seems to be kicking in, and she has been acting a little more like herself.

If you would like to hear Caroline's diagnosis story and treatment journey (so far), tune into 107.5 The River (also available on I Heart Radio if you're not local) tomorrow at 11am CST.  We will be live on the radio to tell her story, hopefully creating awareness and raising money for the place that is trying to save our daughter's life.  We love Vanderbilt so much, and are honored they asked us to participate.  You can listen online by clicking here; we hope you tune in!

Thank you for your continued prayers through this extra-difficult few weeks.

The Lantz Family
#carolinestrong
#ftgf

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.

Rough Week

Caroline is on the tail end of round 2, part 2, of Immunotherapy...the nurses have hung the last couple infusion bags, and everything should be complete by tomorrow.  It's been a really, really, really rough week on her body - probably one of the hardest since she's been diagnosed.  She has had all of the predicted side effects: nausea/vomiting, diarrhea, severe nerve pain, generalized pain, fluid retention, rash/itching, low blood pressure, low oxygen saturation, and extremely high fevers.  Some of her fevers have been so high they didn't even register on the thermometer, which goes up to 105 degrees!  While all of these are considered "normal" side effects for this treatment, it is still very scary and upsetting to watch.  Luckily, the team at Vanderbilt has been able to make Caroline as comfortable as possible, and she's even been able to "rest" a little.  We are hoping to head home this weekend.  As you can (or maybe cannot) imagine, this is mentally exhausting and draining for all of us, so thank you for the prayers for comfort this week, we really appreciate each and every one.

The Lantz Family
#carolinestrong
#ftgf

Jekyll and Hyde

Yikes!  Well, week 2 of round 2 of the anti-body Immuotherapy is officially underway, and Caroline's temperament and comfort level did a complete 180 since beginning the IV infusions of Unituxin, IL-2 and Dilaudid this morning.  She will receive this infusions all week, with the Unituxin running for 20 hours per day, and the IL-2 running 24 hours per day.  We are hoping to have the infusions completed on Saturday, and get discharged on Saturday or Sunday.  This will be the hardest week of Immunotherapy to date, and we expect many side effects throughout the week, including: high fever, extreme nerve pain (and generalized pain), itching, severe irritability/mood swings, low oxygen levels, nausea and loss of appetite.  It is beyond hard and stressful to watch her endure this much.

Please pray for her comfort...and our sanity this week!!!

The Lantz Family
#carolinestrong
#ftgf

Home for 48 Hours ~ Snowman 365

Caroline was discharged today after a relatively uneventful week of inpatient admission for her IL-2 infusion.  Her only side effects this week were: mid-grade fever, nausea and some pain/discomfort, all of which were managed effectively by medication.  She was feeling so well today that she was playing football for a few minutes this afternoon with her brother and friends in our yard!

We will be re-admitted in 2 days (Monday) for a much harder tandem round of Unituxin and IL-2 infusions (click here if you want to learn more about the antibody and side effects).  We expect this coming week to be very difficult on her body; it's apparently harder than the first round and she will again need to be on a Dilaudid pain pump for the entire week-long stay.

Today, November 24th, marks the 1 year date since Caroline was officially diagnosed at Vanderbilt, with Stage 4 High-Risk Neuroblastoma.  We are now one year into a (minimum) 17-month treatment protocol, and are very grateful that Caroline has responded relatively well, so far, to a very aggressive cancer that has an overall survival rate of around 35% for her diagnosis.  We continue to pray that this last part of standard treatment, Immunotherapy, knocks out the rest of the active cancer in her body.  After discharge today, we went back to the exact spot where Caroline wanted her picture taken 1 year ago, as we were leaving the hospital after just learning about her diagnosis (she did not know at this point)...Frosty and Caroline are still standing strong together!

Thank you, again, to all of our friends, friends-of-friends, family, and even strangers, who continue to support our family through this long, hard journey against a very nasty cancer,  The meals, donations, prayers and words of encouragement have been and absolute blessings during a very unstable time in our lives.  It truly has been "the best of times, and the worst of times."

And yes, we did eat Thanksgiving together as a family, albeit on top of the Wilson's Yeti cooler in the corner of a hospital room! Very thankful for the Olivos/Hagues/Stanfords, who went out of their way to make us homemade food on Thursday...it was much better than eating at Subway (no offense Brent), which was the only place open at Vandy that day!

Much Love!
The Lantz Family
#carolinestrong
#ftgf

Same snowman, same strong girl!

A commemoration pie (homemade by Andrew!), and a video message from Caroline...

Thanksgiving Dinner

"Nurse mommy" changing Caroline's central line dressing.

Sending out some positive vibes!!!

1 Year Ago Today

One year ago today, Mark joined Caroline at the Academy of McKay's Mill for a Thanksgiving celebration lunch.  She was in a great mood - sharing in the excitement and running around with all of her school friends!  Just 2 short hours after the picture below was taken, we received a call from the school that Caroline was screaming in pain and inconsolable.  He immediately went back to the school, picked her up, and took her to the local Urgent Care...what happened over the course of the next 3 days changed our lives forever.

The anticipation of this week, and the one year mark, has been gravely hanging over our heads for a little while. Today is a very difficult day for us emotionally, but we love this kid as much as anyone can love anyone or anything, and we just wanted to share with everyone that we are so thankful, and blessed that she was given to us.  WE ARE SO VERY PROUD OF HER for her amazing, fighting spirit!  We love you, Caroline.

Such Proud Parents,
Mark and Margaret
#carolinestrong
#ftgf

Tuesday before Thanksgiving...2017 and 2018.

Immunotherapy Round 2 ~ CMAs w/ Maddie and Tae ~ FTGF!

Today we were admitted to Vanderbilt for Round 2 - part one of Immunotherapy (part two begins next week).  This week's treatment drug is called IL-2, and it is used to boost Caroline's immune system, white blood cell count, and ideally assist the antibody drug (Unituxin) to fight the Neuroblastoma cancer cells in her body.  The IL-2 infusion will run 24/7, for 4 days straight, and begins tomorrow morning.  Caroline will receive "pre-meds" in anticipation of potential allergic reactions and high fevers (common with this drug), as well as pain management meds while the infusion runs.  Possible side effects from this week's treatment are: high fever, pain/discomfort, swelling, nausea, low blood pressure and general flu-like symptoms. 

Last week, Caroline got to attend THREE very, very special events:

On Tuesday and Wednesday, Country Music duo Maddie and Tae surprised Caroline and Andrew with "real" signed guitars and VIP tickets to the CMA awards for our entire family!  It was a once-in-a-lifetime experience for Caroline (and our whole family), and we are very grateful to everyone that helped make it happen.  Luckily, Caroline was feeling like herself that day, which made it even better!  Special thanks to the following amazing folks that participated in pampering Caroline and our crew for the day: Vanderbilt Children's Child Life Team, Maddie and Tae, Aflac, ABC, CMAs, the awesome makeup and wardrobe professionals, and the super generous production and promotion companies...they all made us feel like friends, not just clients or a charity project.

Saturday morning, Caroline was able to join Margaret for a Yoga workout fundraiser that our friend Mary Claire organized to support our family.  The turnout was great for both the Boot Camp and Yoga class.  We are so grateful to everyone that participated and donated to the amazing morning of fun and sweat!

Saturday night, Caroline attended a special pre-show meet and greet with Canadian rock legend, Rik Emmett, who wrote her favorite cancer fight song..."Fight The Good Fight!"  He was very gracious to take time away from his warm-up routine and dinner to spend time with Caroline.  Big thanks to Boston Dan, Rik, Dave Dunlop, and the entire team for making that happen!

We continue to be humbled by the generosity and kindness we've seen throughout this journey.

The Lantz Family
#carolinestrong
#ftgf

Back again!

Maddie and Tae

Mary Claire and Lauren

Rik Emmitt

Difficult Week

Caroline has struggled to recover this week from Round 1 of inpatient Immunotherapy, and has been back and forth to Vanderbilt for fever and check-ups 3 times since discharge on Saturday.  The fever, lack of appetite, and stomach pain symptoms are mostly likely side effects from the latest treatment, but we are awaiting test results that will show if she is also suffering from a stomach virus (which is apparently going around the hospital).  She certainly isn't her normal, energetic self right now, and has lost a few pounds over the last few weeks, but we are hoping she is starting to turn the corner.

We were told by our nurse case manager today that the treatment protocol for High-Risk Neuroblastoma is by far one of the hardest on both the patient and the family, and we can certainly attest to that!  We are approaching the one year mark of Caroline's diagnosis, and our whole family is just mentally and physically exhausted; honestly, we are very "over" this process.  But, we won't quit, we won't slow down, and we will continue to remind ourselves that this schedule and strain on our family is temporary.  If Caroline can endure the actual treatment, we can certainly keep forging ahead at full-steam...even on the days we feel like we have nothing left.

As of now, we are scheduled to go back into the hospital for Round 2 of inpatient Immunotherapy on Monday, 11/19.  We will be in the hospital for Thanksgiving week, and will likely be there for 12-14 nights, with a possible 1-2 day break in the middle (but based on Caroline's recovery from this first round, we aren't counting on the break).

The pictures we decided to share this week show part of her current daily/weekly routine, which includes: many oral doses of liquid medication, a shot in her arm, double-lumen Hickman line flushes, a sterile central line dressing and clave changes, and most challenging of all, 4 oral pills she has to swallow (which can take her 1-2 hours per day to get down!!!). Caroline has been a super-strong trooper over the last year, but it's apparent that even she, too, is getting tired of this grueling routine.  She misses her friends, and wants to be a normal kid doing "normal" kid things; she's starting to notice what she's "missing out on" more and more.

We would like to say THANK YOU to all of our friends and family that have stuck with us throughout.  We are aware that everyone has their own lives, and problems to deal with, so we appreciate that continued outreach and support!  Much love!!!

The Lantz Family
#carolinestrong
#ftgf

Home and Resting

Caroline was discharged Saturday afternoon, and is now home resting and recovering from Round 1 (of 6) of Immunotherapy.  She should start to feel a little better as each day passes.  She will receive a shot daily for the next 5 days, in addition to taking a daily pill for the next 2 weeks (both of which are still considered part of this 1st round of Immuotherapy).  Caroline will meet with her Vandy team on Friday for a clinic check-up and labs.

For those that want to understand more about general Immunotherapy, this is a very good, short video that explains it: click here.

If you would like to learn more about the specific Neuroblastoma antibody infusion drug that is given to Caroline while she is inpatient (causing the severe side effects), you can click here.

Thank you, thank you for the continued prayers,
Lantz Family
#carolinestrong
#ftgf

Finally Home with Hank!

Better day on Sunday

Immunotherapy - Round 1

Caroline is on her 4th and final day of the antibody infusion for Round 1 of Immunotherapy.  As a reminder, there are 6 rounds of Immunotherapy, which is the last step in the "standard treatment protocol" for High-Risk Neuroblastoma; we are anticipating these rounds to last until late March 2019.

So far, Caroline has had most of the typical side effects that can accompany the antibody infusions:  high fever (up to 105!), severe nerve pain, rash, low blood pressure, and reduced oxygen levels. Her Vanderbilt team has done an excellent job of relieving the symptoms as they arise.  Other than a quick goodbye visit with her buddy Finn on Tuesday, and watching a little hallway Halloween parade, she has mostly remained in bed.

This morning, Caroline required another red blood cell transfusion due to low hemoglobin counts.  The transfusion should help her body finish out this antibody round on a strong note.  Assuming no fever or other issues, we hope to be able to go home by Sunday.  She will still require a daily shot for a week, as well as a daily pill for two weeks when we come home, which is considered a part of this Immunotherapy round.  The next inpatient stay and infusion round will start in a few weeks.

Thank you again for the meal gift cards, prayers, donations and offers for help with Andrew!  It has all been very helpful and we appreciate each and every one of you!!!

Team Lantz
#carolinestrong
#ftgf

Test Results / Inpatient Admission for Immunotherapy

Today we received the test results from Caroline's recent bone marrow biopsy and scans.  The results showed essentially no change in the Neuroblastoma, which was last tested in May.  We are disappointed, as we were hoping for a "no evidence of disease" report today.

Since that test in May, Caroline has endured 2 month-long stays for high-dose chemo, 2 stem cell transplants, and 20 Proton Radiation treatments.  It appears that all the treatment hasn't helped reduce the cancer in her little body.  The positive that we're trying to hang onto: her cancer didn't get worse, and there aren't any new areas of concern.

Caroline's oncology team is confident that we should remain "on the course," so she was admitted for Round 1 (of 6 total) of Immunotherapy late this afternoon.  We're expecting this round to keep us inpatient through Saturday.  The next 6 months will be the final phase of the standard Neuroblastoma treatment protocol, and we are hopeful that these rounds will kill off the remaining cancer cells in her body.

Immunotherapy is a type of medicine that helps a patient's immune system recognize and destroy cancer cells.   There are many different types of Immunotherapy...Caroline will be receiving infusions that are tailored to High-Risk Neuroblastoma.  We've been told (and have witnessed from the sidelines) that this phase of treatment is often the hardest part of the entire treatment protocol, for both the patient and family.  We will (again) be in and out of the hospital over the next 6 months - separated as a family and witnessing Caroline's body battle this monster.  The potential side effects are immediate and severe; they include: high fever, rash, excruciating nerve pain, potential organ complications, low blood pressure, rapid heart rate, swelling, breathing complications, allergic reactions, diarrhea, infection and vomiting.  It's going to be a really tough experience, but her medical team at Vanderbilt are preparing to do their best to stay in front of the pain and other side effects.  Caroline already started taking nerve pain medication a few days ago, in preparation of the Immunotherapy infusion, and will also be on a PCA Dilaudid pump while she is inpatient (among other things).

Many have asked about meals (thank you!), but we will not be doing a meal train delivery for this round...we plan to spend as much time as possible together as a family at the hospital.  For those that wish to help with meals, please click here for the Grub Hub gift card link (they can be emailed to margaretlantz@gmail.com).

We can't express enough how thankful we are to have such a supportive group of people around us.  Thank you for following along on our journey; many times your prayers are what's holding us up and pushing us through.

Holding onto hope,
The Lantz Family
#carolinestrong
#ftgf

Nurse Kate's last day...so sad to see her go, but we're excited for her new adventure!

So excited to have Aunt Joanna and Aunt Lauren here for 24 hours!

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!

Update: Fun week at Home!

Caroline spent some much-needed time at home in Franklin this week, and got to do MANY of the fun things she missed while away in Cincinnati.  She had a playdate and baking session with Miss Stacey and Shelby the dog; a cookout and sleepover at her favorite TN mountaintop; a Preds game (and win!) with the family; homebound kindergarten classes with Miss Elise; watched her brother play an EWA Cubs game; visits with friends Mr. Scott and Mr. Chris; and last but certainly not least...learned to ride her bike with no training wheels after only 4 attempts!!!  She is rocking and rolling right now - feeling well with plenty of energy.

Her counts at clinic this week were just "ok," so Caroline will need Neupogen shots for the next 3 days, and we will head back to clinic on Monday to check again and continue monitoring them closely.  Unfortunately, with cold and flu season almost here, it will (again) soon be time to start limiting Caroline's exposure to enclosed spaces and large groups of people, so we plan on continuing the outdoor fun this weekend.  Tonight we're heading to have firepit s'mores with friends that live on our alley, another EWA Cubs game Saturday afternoon, a fun neighborhood party tomorrow night, and then a Ravens vs. Titans game to cap it off on Sunday.  We are trying to LIVE and enjoy every day right now!

One of our amazingly talented friends, Anneliese, designed a "superhero" logo for Caroline (featured on the blog), and she put them on new t-shirts to support Caroline.  They are the first batch to feature that theme, they come in multiple color and style options, and include a front and back logo design.  You can check them out by clicking here.

Thank you for all the love and support!  We hope you're able to enjoy and live your days to the fullest this weekend!
Lantz Family
#carolinestrong
#ftgf

 Go Caroline!!!