Autumn Jones' Fundraiser for Caroline / Clinic Visit Update

Thank you to everyone who participated in the Caroline STRONG fundraiser last night!  We had a great turnout, and we were truly blown away by the love and support from all of our Franklin-area friends and neighbors.  Caroline had a wonderful time seeing so many of her buddies, including her new pal, the Predators mascot, Gnash (major props Brian and Lincoln!). 

An extra special thank you to Autumn Jones for creating and organizing the entire event!  She put a ton of work and effort into this and we are beyond grateful for her dedication from start to finish.  Autumn, you rock and we love you! (*Fun fact: Autumn hosted Margaret's baby shower for Caroline back in 2013*). 

We also want to give a shout out to Autumn's VP's of Party-Planning, Cris Smith and Elizabeth Regas, and to all of the other folks that worked the raffles, check-in, kids' tables, grills (pretty much all the Jeffs in the VOC), DJ booth, dance judges, auctioneers, etc...we appreciate every one of the volunteers.  It was a night we will remember forever!  Our hearts are full and y'all are amazing!

Caroline visited the VUMC outpatient clinic today for her regular check-up, and (finally!) got mostly positive news.  Her platelets, white blood cells, and ANC (immune system) counts were all strong!!!  However, she did require a red blood cell transfusion as a result of low hemoglobin numbers. The doctors seem pleased with her recovery progress, so as of now, we are on track to start Round 2 of High-Dose Chemo / Stem Cell Transplant on July 16th.  Please continue to pray that Caroline stays healthy (and happy) over the next few weeks to avoid any delays in the treatment protocol/timeline!

As parents, we are very sad many days, really do struggle to get through the day, but you folks help keep us moving forward.  So, once again, thank you for all of the love, support, prayers, and well-wishes from near and far.  We could not do this without our incredible, ongoing support system.

Team Lantz

#carolinestrong
#ftgf

First time on a swing in almost 2 months!

FREEZE Dance!

Meeting Gnash!

Sporting her Gnash gear for clinic...

Cracking herself up while getting her blood transfusion - LOL!

Looks good...but, counts are LOW :-(

After 10 days home, we're finally settling in and getting back to our routine...for now.

Caroline went to clinic this past Monday and again today.  Her coloring is great, she's been acting more like herself, but her insides are still really fighting hard to recover from the high-dose chemo.  Her ANC/Neutrofils/White Blood Cell "counts" are still really low.  In fact, if we were inpatient right now, they would not even be high enough for her to be discharged.  Luckily, she doesn't have a fever, so we're able to continue to recover at home.  Caroline will remain in isolation (at home) until her counts come up...which we're hoping happens this weekend.  She got another Neupogen shot today, which is her 19th Neupogen shot since she finished the high-dose chemo right before her stem cell transplant.  Just as a refresh, the Neupogen shot helps revv up her white blood cell count, but her body is just taking a longer time to recover.  We return to clinic on Monday to check again.

Thank you for the continued prayers, meals, gift cards, generous gifts...everything!  Thank you for sticking with us through this long, hard journey. 

Reminder, if you're local, we'd love to see you next Thursday (6/28), at the event our awesome friend Autumn is hosting!  Click here to purchase tickets.  Hope to see you there!

Happy Father's Day

Happy Father's Day to the most amazing dad I know...Mark!  He's getting our family though the toughest time I hope we ever face.  We're so lucky to have you as our protector and provider, and we love you so much!

XOXO - Margaret, Andrew, Caroline and Hank the Tank

Reunited...and it feels so good...

We're all home and under one roof!!! 

Thank you for lifting up so many prayers!
Team Lantz
#carolinestrong
#ftgf

Besties!

Still here...

We have spent 27 of the last 28 nights at the hospital, and it looks like we are here for at least 1 additional night (maybe more).  Caroline needs to be fever-free for the next 24 hours, maintain good blood and platelet counts, and be eating and drinking enough on her own before they will consider her for discharge.  She is in good spirits, and her appetite is returning a bit, so we are cautiously optimistic. Please continue to pray for progress with recovery so we can get home ASAP!

Family Fun Party ticket link below-  Thank you for all the support!

https://www.eventbrite.com/e/carolinestrong-party-fundraiser-tickets-46769774655

Team Lantz
#carolinestrong
#ftgt

Eat More Cake!

A Better Day / Local Fundraiser

Caroline’s fever looks like it has finally broken (hope this doesn't jinx it!)!  She has been fever-free since 7am this morning, and we're so grateful for the improvement.

She does have a little fluid retention /swelling as a result of some of the treatments she's received, but it doesn't seem to be a major concern at this time.  We are also monitoring a new, mild body rash that seems to be spreading, with no clear indication of the cause (yet).  Luckily, it's not currently itching her, but it is a concern that we will monitor and hope for a resolution ASAP.

The Vandy team started Caroline back on her NG tube feeds this afternoon - she will slowly increase the dose until she is able to tolerate at least 75% of her nutritional needs; she will continue these feedings at home (whenever we get back there) until she can/does eat proper nutrition on her own. The high-dose chemo and mucositis really effected her GI tract, and she hasn't wanted to eat or drink much at all over the past few weeks.  She is also able to take her oral medications through the NG tube, which is a huge help while she's still recovering from the pain of mucositis.

We expect to be in the hospital at least a couple more days, or until she is "healthy" enough to return home.

Local Nashville friends: please click the link below to check out this awesome family fun event that Autumn Jones has put together to honor Caroline. Thank you very much, AJ, and all of the supporters!

https://www.eventbrite.com/e/carolinestrong-party-fundraiser-tickets-46769774655?ref=eios&aff=eios

Many Thanks!
Team Lantz
#carolinestrong
#ftgf

Thank you for sharing your unicorn cookies, Arlie!

Back in the Hospital

After less than 12 hours home, Caroline was re-admitted to Vanderbilt very early this morning due to severe nausea and a high fever last night.  Many tests and an x-ray later, they've determined she has some kind of virus (rhinovirus or enterovirus), which essentially is the common cold.  With her weakened immune system, all viruses and infections (and their symptoms) are cause for alarm and need to be addressed immediately.  For now, she will be resting in the hospital, getting hydration/nutrition and fever control. We are awaiting the results of a couple more tests, but hopefully we are able to go home again in the next couple of days; we will keep everyone posted.

The Lantz Family

#carolinestrong

#ftgf

22 Days

After 22 days in the hospital, we're out!

#carolinestrong

#ftgf

She's turned the corner/Angel Nurses

Today, Caroline's ANC (absolute neutrophil count/immune system) was up to 750, which is great progress, considering she has been at 0 (zero) for a long stretch!  Among other things, she needs to have an ANC above 500 for 3 days in a row to be considered for discharge.  She is still on a laundry list of medications, and a little swollen from fluid retention, but barring any setbacks, we are on pace to go home Monday...1 week ahead of schedule!  We are VERY excited to all be together again in the same house!

Caroline will come home with her feeding tube for at least 4 days, or until she is getting enough nutrition through her regular diet.  We should be able to enjoy 5 weeks at home before the next round of high-dose chemo/stem cell transplant #2 (more details to follow, as we get them).

Once again, thank you to all the doctors, nurses and support staff at Vanderbilt!  Caroline is having a great time this week hanging with many of her nurse friends: Morgan, Josee, Abby, Deanna, Valerie, Ashley, Livvy, Jennifer, Caitlin, Sarah, Kate (welcome home!!!), and so many more...we are so blessed and grateful to have such wonderful people taking care of our daughter!

Thank you for all the prayers and support!

The Lantz Family
#carolinestrong
#ftgf

Arts and crafts with Nona!

Mucositis Pain / C. Diff / Rash Update / Fever

Caroline is still in really rough shape overall.  She has severe pain from the mucositis that has spread throughout her GI tract, which is a major side effect of the high-dose chemo and not having an ANC (immune system).  She is also still struggling with the pain and effects of C. Diff, which she will be tested for weekly, until she tests negative for the infection 2 weeks in a row.  Her pain is being managed by both a continuous morphine drip and a demand push-button.  She's also been fighting off a fever for the last few days.  We are grateful that Caroline is no longer dealing with the rash that lasted for 7 days, and she has not complained about any severe itching for the past several days.  Her day primarily consists of laying in bed, with an occasional trip to the couch to play with her baby dolls.

We are hoping that she begins to turn the corner over the next several days.  The first indicators will be an improved ANC, and less pain in her mouth/throat and GI tract.  She has not been able to eat or drink in over a week, but is receiving nutrition through her NG feeding tube and IV fluids.

Thank you for all the love and support!

Lantz Family
#carolinestrong
#ftgf

Changing the lines/IV bags...so many medications hooked up at once.

How she spends most of the day.

Peach fuzz hair will fall out again from this round of chemo.

Morphine push button.

She loves playing babies with Aunt Joanna!

Always trying to smile, no matter how she feels!

Rash / C. Diff

...and the rough days continue. We are 2 days post-transplant, and in addition to the side effects from the high-dose chemo we discussed in the last post (all of which she is still experiencing to various degrees), Caroline has since developed a terribly uncomfortable rash over most of her body, and tested positive for “C. Diff.”

Rash
The rash started Monday night, spread, and got progressively worse over the last 2 days...and, as luck would have it, is the most bothersome at night, so she’s barely been able to sleep. Caroline’s transplant team, oncology team, pharmacist, nutritionist and dermatology team have all been working together to determine the source and solution of/for the rash. They’ve basically thrown the kitchen sink at her to help ease the itchy symptoms, but unfortunately her rash is falling into a generic category, with an “unidentifiable source agent,” which is called a “morbilliform” rash. Because they can’t pinpoint exactly what’s causing the rash, they can only treat the symptoms. Treatment is in addition to the laundry list of medications she is already receiving, and includes: 3 IV medications, 1 oral medication (through NG tube), and various topical creams as needed. They do not know how long the rash will last, but best guess is another 5-7 days. She is very uncomfortable and having a hard time sleeping (as would anyone).

C. Diff
C. Diff is fairly common in the transplant/oncology world, due to the amount of antibiotics patients have to take. Ironically, the treatment is an(other) antibiotic. It’s a potentially life-threatening infection caused by a type of bacteria called clostridium difficile...aka: C. diff. It can cause colitis (a serious inflammation of the colon), or even more serious colon issues like toxic megacolon or bowel perforation. C. Diff is highly contagious, so Caroline will be on “contact precautions” for the duration of her stay, which is an even stricter level of isolation: everyone entering her room must wear gowns and gloves, Margaret/Mark can only enter or exit the hospital (no walking around the hallway or going to microwave/fridge/ice machine, etc.), and Caroline will not be allowed to leave the room - at all - until she is discharged, even as her ANC counts improve.

While it’s annoying to be literally confined to the room, and be completely dependent on nice people/nurses/care partners bringing you everything you need (like morning coffee!!!), we understand the severity of the infection, and how easily it can spread.

Caroline’s ANC/Neutrophil counts are zero, and we expect them to remain like that for another 7-10 days (or more). She’s getting daily Neupogen shots, and is resting when she can. She’s not talking too much, but using her thumbs up/thumbs down response to let us know how she’s feeling.

Caroline was finally able to smile and play for a little while today, for the first time in quite a few days, so that was a VERY happy for see.

We appreciate the help and visit we got this week from Pop-Pop and look forward to Caroline’s Aunt Joanna coming later this week!

Thank you for your continuous prayers for her comfort and healing.

The Lantz Family

#carolinestrong

#ftgf

Partial view of rash, which is over most of her body.

Stem Cell Transplant Day

Today was Caroline's Stem Cell Transplant!  She received her own stem cells that were originally collected from her stem cell harvest back on January 30th.  The actual "transplant" process was rather quick and painless.  The frozen stem cells were brought to the room in dry ice, thawed in warm water, and then slowly injected into Caroline's central line.  The entire process took less than 30 minutes.

The purpose of the stem cell transplant is to help rescue Caroline's immune system (called ANC/neutrofils) from the high-dose chemo she received last week.  If she didn't have this transplant, her immune system would not be able to recover.  She received 4 million cells per Kg (approximately 70 MILLION cells); the target dose was 2 million per Kg, so we hope that her recovery may be expedited with the additional potency.   It's expected to take a couple weeks for her ANC to increase to a safe level to be discharged, which is why we're on the extended hospital stay. Caroline will start receiving daily shots of Neupogen, beginning tomorrow, which will also help her begin to recover from the effects of high-dose chemo. 

This very challenging high-dose chemo and stem cell transplant process will be repeated again this summer (probably early July). 

Caroline has had the worst 3 days of her life this past Saturday through today, and the worst is yet to come.  So far, she has experienced the following side effects from the high-dose chemo: extreme nausea and emesis, belly pain, throat pain, insomnia, mucositis through her entire GI tract, bloody stool, loss of appetite, not drinking, and not talking (because her throat hurts).  This has been the hardest stretch on our family by far; it is absolutely torturous to watch, and we all feel very helpless.  Please pray for her comfort, and that she is able to rebound from this quickly.

Thank you all for the continued support.  We are very grateful for all the prayers, meals, help with Andrew, gifts, donations, visits...just everything! 

The Lantz Family
#carolinestrong
#ftgf

Child Life Services does an excellent job of not only prepping kids for what to expect during the transplant, but also celebrating the actual day!  They arrived this morning with a bag of new toys for Caroline to play with, since she isn't allowed in the playroom during this stay, and they made this awesome sign that matches her "rainbow theme..." we LOVE Vanderbilt!

Stem cells arriving on dry ice!

Bag of stem cells prior to thawing...

Stem cells thawed and in syringe, ready for injection.

 

Dr. Kaviany injecting the stem cells - she's amazing!

 Daddy love!

So many hookups...

Really not feeling well this round.

Feeding Tube / Day 3 and 4: High-Dose Chemo

Chemo #1 and the baths every 6 hours around the clock are thankfully behind us now!  Caroline is still getting Chemo #2 daily, with the last dose being tomorrow.  Sunday will be a day of "rest" before her stem cell transplant on Monday.

Caroline had a feeding tube (aka: NG tube) placed today to help with getting nutrition and the medications she has been taking orally into her system.  She's struggled with both eating and taking her meds the last couple of days, so having the tube will get her everything she needs, without worry.  The process of getting the tube inserted can be scary, but Caroline was a trooper (as usual!) and did a great job, with minimal crying.  The nurses and staff were absolutely wonderful during the procedure.  We cannot express in words how grateful we are to be here with this team at Vandy!

Love,
The Lantz Family
#carolinestrong
#ftgf

Bone Marrow Biopsy Results / Day 3 High Dose Chemo / Vanderbilt Team

Today we got the results back from the bone marrow biopsy, and they're encouraging.  Currently, Caroline's bone marrow has less than 1% of Neuroblastoma cells, down from 20-25% previously, and down from 90-100% originally.  We are all encouraged by the news and feel like Caroline is headed in the right direction overall.

We are now into the third day of high-dose chemo and the baths every 6 hours around the clock.  Caroline is more tired today and has been a little nauseous, but hanging in there.  We expect her to feel worse every day for the next couple of weeks.  Today is the only day of this high-dose chemo round that she will receive 2 types of chemotherapy. Tomorrow through Saturday, she will get chemotherapy once a day.

HUGE SHOUT OUT, and a big THANK YOU to the medical team here at Vanderbilt.  The personalized care they have given to Caroline, and always going the extra mile, really helps makes this miserable experience tolerable for our family.  We appreciate the nurses, doctors, therapies and social workers that go above and beyond the call of duty every.single.day!

Many Thanks!
Team Lantz
#carolinestrong
#ftgf

Current mood...

Day 1: High-Dose Chemo

We're in our room and all settled.  Caroline got her first dose of chemo around 10:30am, and she's had her first scheduled bath.  The type of chemo that she gets seeps out through her pores, and can burn skin (hers and anyone that touches her), so she has to get baths every 6 hours, around the clock, until the day after she's finished taking this chemo (Thursday).  In addition to requiring extra bathing, she also has to change her pjs, get all clean sheets/blankets/stuffed animals, etc.   Margaret has to wear gloves when she touches her, change clothes when Caroline changes, and generally not come into skin-to-skin contact with Caroline.  The side effects are being well-managed right now, and we aren't expecting to see anything extreme until tomorrow. 

Walking into the hospital - 7:30am

Packed for a month!

1st thing to prep for chemo was: get her central line dressing off, as well as her steri-strips leftover from the tumor resection, so the dressings don't hold the chemo on her skin, and cause burns.

Playing "Nurse" with her baby doll.

Still smiling!

MIBG Scan Results / Monday's Admission and Schedule

Caroline’s transplant doctor called us yesterday while we were on the way home from the scan/biopsy with (to quote her) “very good news.” The MIBG Scan showed significant improvement and reduction of disease from surgery and chemo to date. Her Curie score is now a 1, down from 5 when we started in November. Any Curie score below 2 is usually a sign that patients will respond relatively well to the rest of the treatment protocol (still 12 months left!): high-dose chemo, stem cell rescue, radiation, and immunotherapy.

While we were at her clinic appointment today, we were able to view her scans alongside her original MIBG scan, and get more info on the most recent results.  The cancer that still exists is mainly contained in her pancreas area, which is what we suspected, based on her surgery, and the portion that her surgeon was unable to remove.  The medical team is satisfied with the results to date, and we will move forward with the treatment protocol as planned.

Caroline and Margaret will check into the hospital early Monday morning for approximately 30 inpatient days. The team is hoping to start the high-dose chemo by mid-morning on Monday.  Here is the schedule for the extended stay, as well as info for visitors:

Schedule:

• Monday, 5/14: High-Dose Chemo, type #1 (requires baths every 6 hours, around the clock, to prevent skin burn)
• Tuesday, 5/15: High-Dose Chemo, type #1 (requires baths every 6 hours, around the clock, to prevent skin burn)
• Wednesday, 5/16: High-Dose Chemo, types #1 AND #2 (requires baths every 6 hours, around the clock, to prevent skin burn)  **this is expected to be the worst chemo day during this cycle, because she will be receiving both types of chemo on the same day**
• Thursday, 5/17: High-Dose Chemo, type #2 (baths every 12 hours, to prevent skin burn)
• Friday, 5/18: High-Dose Chemo, type #2
• Saturday, 5/19: High-Dose Chemo, type #2
• Sunday, 5/20: Rest
• Monday, 5/21: Stem Cell Transplant Day!
• Tuesday, 5/22 and beyond: Neupogen shots daily until ANC (neutrophils) is above 500 for 3 days in a row, and then remain inpatient, isolated for approximately 21 days, or until her ANC and blood counts recover to safe levels for discharge.

Caroline will not be able to have any visitors during this hospital stay because her immune system will be more compromised than ever before, due to the high-dose chemo.

We will know the bone marrow results by Monday, but the MIBG scan news is giving us renewed energy and hope!

Today is the last day to purchase this batch of t-shirts. Click here to order.

Thank you for your continued support for our family...we're ready for the next phase!

Love,

The Lantz Family

#carolinestrong

#ftgf

                                                Today's Clinic Check-up at Vandy

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!  

We're Home!

We're home!  Caroline and Margaret got home early enough to take naps and cheer on Andrew at his baseball game for a little bit.  We're so happy to all be together again for an extra few, unexpected days at home!

Caroline leaving the hospital: "Seacrest Out, Baby!"

Cheering on the Cubs, while loving on her buddy, Milo!

Andrew is so happy to have everyone together...and let's go Preds!

All the love,

The Lantz Family

#carolinestrong

#ftgf

Surgery Recovery Update / What's Next...

Surgery Update:

Yesterday we got a visit from Caroline’s surgeon, Dr. Chung. He was super impressed with her progress, determination and great attitude!  So much so, that barring any unforeseen complications tonight, she will be going home TOMORROW!!!  That's at least 3 days earlier than planned!  She's rocking it!

To put this amazing recovery time in perspective, over the last 36 hours, Caroline has bounced back from 8+ hours of surgery (and all that goes with that), plus:

- removal of 2 catheters on Saturday

- removal of 2 IV lines (one in each hand) on Saturday

- disconnecting from fluids yesterday and maintaining her own hydration

- moved quickly from NPO (no food/drink), to a clear liquid diet yesterday, then to a regular diet today (she's eating a loaded baked potato right now!)

- her epidural was removed today, which administered continuous pain medication, and she has be able to maintain pain control with oral medication

These are all huge wins!

Thank you for the support near and afar...clearly the prayers are working!

What's Next:

Assuming we go home tomorrow, Caroline will relax and recover at home for the rest of the week.  We will go back and forth to the Vanderbilt Clinic all next week for a multitude of tests required for the next phase (high-dose chemo and stem cell transplant).  Some of the appointments include:

- EKG

- Echocardiogram

- Kidney Function Test (to determine the max amount of high-chemo her body can withstand)
- Hearing Test
- Various Ultrasounds

- General labs and various blood tests
- Radioactive Injection (which requires 2 days of prescription prep to protect her thyroid)
- Bone Marrow Biopsy - to see if there is still cancer in her bone marrow (at the last check, there was about 25%)

- And the biggest...the MIBG scan, which will show us how much, if any, active cancer cells are left in her body

Thank you for the visits this week, messages, meals, thoughts and prayers.  We are continuously amazed and humbled.  

Hope you're all having as great of a day as we are,

The Lantz Family

#carolinestrong

#ftgf

 

We were able to get outside for a few minutes to enjoy the Children's Garden and Koi Pond!