Cycle One Inpatient Complete - Home

Caroline finished her inpatient stay for Cycle 1 of treatment for relapsed Neuroblastoma today! She's at home resting and recovering from a brutal 6-night stay at Vanderbilt. The side effects have been nausea, diarrhea, occasional rash, fever, loss of appetite, overall pain, and discomfort.

In the past week, she's had her port placed, a bone marrow biopsy, 2 chemos each day for five days, and the antibody treatment infused over 20 hours per day for four days.  Beginning today, for the next 7 days, Caroline will receive Leukine shots to help her immune system recover. She is also on more than a half dozen other medications to help with the treatment side effects and infection prevention.  Cycle 2 will start in about two weeks (mid-May), with weekly outpatient clinic visits to check her counts in between.

She will spend the next few days recovering at home, and we are hoping she feels well enough to get back to school soon, although she'll have to limit her physical activity due to the port (located in the upper right side of her chest), and she also had to stop playing spring rec soccer.  

Please continue to pray / send good vibes / hope for the best possible outcome for Caroline. In addition to needing the treatment to kill off these aggressive cancer cells spread throughout her little body again, she is really just so sad.  This time around she is more aware of what she's "missing," and she has a lot more "big" feelings about what's going on.  Although we have faith and will go to the ends of the earth to fight this, we all know too much and are scared.

We are so grateful for her amazing care team at Vanderbilt…as always, they have been gracious, patient, and compassionate during this entire process.

As we mentioned before, we have received some packages in the mail without sender information…please know we appreciate every one of you, and the outpouring of love and generosity! We know we can’t do this alone, and there is much comfort for us in numbers.  We definitely can feel all the love and support, and know Caroline has an army from all over behind her!  

The Lantz Family
#carolinestrong
#ftgf

Donate Blood in Caroline's Honor

Contribute to Medical Expenses via GoFundMe

Family Meals via UberEats (email to margaretlantz@gmail.com)

Misc Treatment Needs via Amazon Gift Card (email to margaretlantz@gmail.com)

Recovering at home

Beside EKG after some chest pains on night 5

Bedside X-Ray after chest pains on night 5

How she spent most of her time inpatient...

Caroline got a VERY special visit from Squid, the hospial's emotonal support dog.  He spent almost an hour laying in bed with her on one of the hardest days of the cycle.  As soon as she saw Squid coming into the room, her face lit up - and words cannot describe how much seeing her smile meant!  Thank you Mars Petcare and the Better Cities for Pets Program for sponsoring Squid at VUMC!

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.

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.

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

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!

ICU

Caroline was moved to the ICU last night for very low blood pressure and oxygen numbers.  Her body is having a tough time fighting off multiple viral and bacterial infections.  She has a fever and pain all over her body, but mostly is complaining about her back, legs and stomach (probably from infections and counts recovering).  She is not allowed to eat or drink until her she is no longer on IV blood pressure medication (Norepinephrine). She is currently stable but not very comfortable.

We will keep everyone updated on this blog as we get more information.  Thank you in advance for the continued prayers and positive thoughts!

Team Lantz

#carolinestrong

#ftgf

Proton Radiation...in Cincinnati, OH...uggh

We had our radiation consult today at Vanderbilt.  The overall goal of radiation is to kill any remaining, or hard-to-see, cancerous cells in the main origination areas of a solid tumor.  Due to the location and complicated nature of Caroline's tumor, she requires a newer form of radiation called "proton radiation therapy."  Proton radiation therapy is a more targeted form of radiation, compared to the more common "photon radiation."  Proton radiation will also be safer for Caroline, hopefully causing fewer long-term side effects.

Unfortunately, there are no pediatric proton radiation therapy locations in the Nashville area (ironically though, there is one opening 2 miles from our house later this year, but because Neuroblastoma is so aggressive, she needs to start radiation asap).  The closest (and best!) proton therapy center for the type of radiation needed/area of her body is located in a suburb of Cincinnati, Ohio.  Cincinnati Children's Hospital is currently ranked #1 in the nation for pediatric oncology!  We do not have all the details yet, but within a few weeks, we will have to travel to Cincinnati, OH for the radiation phase.  Caroline will be receiving 20 radiation treatments, which are administered Monday - Friday (4 weeks, unless something unexpected were to happen).  Prior to the proton therapy, she will have to get planning scans and a mat that is sculpted to hold her body, so she can lay in the exact same position each day.  The radiation is performed under sedation, and is about a 2 hour-a-day process, start to finish, and is considered an outpatient treatment.  We are in the process of finding a clean, safe, isolated hotel/condo/airbnb for her to rest and recover each day.  All in all, we anticipate being in Ohio for about 5 weeks.   As mentioned, we don't have all the details at this point, but we will share those as they progress later this week.

This will be another unexpected and challenging balancing act for our family.  Andrew goes back to school this coming Friday (8/10/18), and Fall baseball is also starting up this weekend.  We will now have to plan to be separated again, without the option of quick visits to the hospital (like we've been doing, to try and keep some semblance of family togetherness).  Just like we've been able to do so far, we will figure it all out somehow, but this is certainly very mentally and emotionally draining...especially coming off the heels of her recent high-dose chemo/stem cell transplant inpatient stay. 

We appreciate all the kind messages of support, the calls and texts, etc.  For those that continue to ask how they can help, please see the donation link below.  In addition to the never-ending medical bills and expenses, we will now be adding travel, lodging and meal costs for the 5 weeks in Ohio to our list of unexpected expenditures.  We appreciate any and all support.  Thank you all!

Lantz Family

#carolinestrong

#ftgf

If you would like to donate, click here: https://www.paypal.com/pools/c/80FGIeu7k1

Waiting, waiting, waiting...

Caroline's little friend Molly's last radiation treatment at Vandy was today, and she brought in cupcakes to celebrate!  We were so excited for her! #mollystrong

"Sneak-a-peek" at school tonight...can't believe he's in 5th grade!

Carpool line pass has Caroline listed as a Kindergartner - wish she could be there with Andrew this year, instead of doing homebound instruction :-( 

Bottoming Out / Pre-School Graduation Day

As we often mention, the community support we've received during the last 8 months has been a perpetual source of love and gratitude.  Today, we would like to give a very special thank you to The Academy of McKay's Mill.  The Class of 2018 is graduating tonight, and we really wish Caroline could be there in her little cap and gown, just like her friends, and just like her brother, when he graduated from The Academy in 2013.  The Academy is where Caroline spent every working weekday since she was 16 weeks old...it was her home away from home, and she loved her teachers and friends just like they were her family.  Other than telling Caroline she had cancer, telling her she couldn't go back to school and see her friends/teachers was the hardest conversation we've had with her.  Although Caroline never went back to school after she was diagnosed, we've never felt like she actually "left."  Our Academy family has been steadfast in their inclusion and support for Caroline - always checking on her, sending cards, videos and even homework!  We were also included in the formal graduation photos, and then were surprised with a special insert for Caroline within the graduation program, which literally brought us to tears.  Despite the fact that Caroline won't be able to formally graduate with her friends, having a picture of her in a little cap and gown, from a place that helped raise her, is truly priceless.  Thank you, Academy of McKay's Mill - we love you all!     

Hospital Update:
Right now, Caroline is having her most difficult stretch since starting the treatment protocol back in November.  She has extreme mucositis through her entire GI tract (worse than during her last transplant), which is causing her to struggle with getting enough oxygen.  She is now on a nasal cannula, which is giving her the oxygen assistance she needs.  The other major issue she's having is blood and intestinal tissue in her stool, also as a result of her GI tract being stripped raw from the high-dose chemo.  Needless to say, it is VERY painful for her; she is on continuous Dilaudid/pain medication (already more than the last transplant), as well as a patient-controlled button, which she needs to use frequently.  The mucositis has also moved into her throat, which causes her so much discomfort that she doesn't want to talk; she is mostly using hand motions and a bell to get our attention.  We expect her to struggle like this -- or worse -- for the next 5-7 days.  She received both red blood and platelet transfusions today to help get her numbers up before we head into [what we expect to be] a very challenging weekend.  Please continue to pray for her comfort and a speedy recovery.

Team Lantz
#carolinestrong
#ftgf

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.

How We're Feeling / Surgery Info

With Caroline's pending surgery on Friday, we wanted to give everyone an update on how we're doing as a family.  We've had almost 2 months without intense treatment, fever or sickness, and unless God has other plans, we have 5 more days together as a family before we get back into the thick of treatment...we're facing 70+ nights in the hospital over the next few months.

From Mark:
Five months in and I'm not "ok" - as I often get asked- no one could be in this situation.  I struggle every day.  I am able to stay busy during the day and I don't really slow down enough to think about what's going on.  I stay mostly positive around the kids, friends, and family...that's my job.  Things are often different when I am alone. I'm awake in the middle of the night most of the time...thinking about how this all could play out. I often focus on the sadness of the situation itself.  I have anxiety about what Caroline (and Margaret/our family) is/are about to experience over the coming months (surgery, 2 rounds of high-dose chemo, 2 transplants, radiation, immunotherapy).  I am not looking forward to being 30 minutes away from Margaret and Caroline for weeks at a time.  I'm sad that Andrew won't be able to see his whole family every day.  I'm upset that Margaret and Caroline will most likely be quarantined to a small hospital room for days or weeks at a time.  This whole thing is awful really, but we can't focus on that all the time - we have to be productive and keep moving forward like #carolinestrong does. Caroline is a warrior and an angel, and Margaret should qualify for sainthood for what she is doing for our family.  I appreciate their hard work and sacrifices every day.  I appreciate the care and love the Vanderbilt team gives to our daughter.  Those folks are amazing and always go above and beyond for our family. We have received an enormous amount of support from family (all who live out of town), friends, neighbors, strangers and co-workers - we appreciate every one of you.  We have a long way to go, and this upcoming stretch over the summer is going to be the hardest to date.  We will need a lot more help, so a BIG Thank You in advance for your continued support. #FTGF

From Margaret:
In one day, my life literally, completely changed.  Not only did I find out that our daughter - my walking heartbeat - had cancer with a statistically terrible prognosis, but I also instantly knew that the care she needed would mean I had to step away from my career -- something that has defined me and has been a source of fulfillment my entire adult life.  I lost my "life plan," my job, and my children's innocence...all in one fell swoop.  Over the last 5 months, I have had all the typical emotions people would expect with this sort of news, but most consistently I feel three things: sad, grateful, and humbled.  I cry almost every morning at the gym so that I can stay positive the rest of the day for the kids, and then let it back out again at night when they're in bed.  This morning I heard a song with a line in it that I can't stop thinking about: "better than I used to be."  As crazy as it sounds, I feel "better than I used to be," before she was diagnosed.  I feel lucky that I get to take care of Caroline...I feel lucky that Mark was supportive of me instantly walking away from my job, taking on the burden of providing for our family alone, while he's coping with the diagnosis as well.  He has been a rock for our family, and we are in a good place.  I've had lots of time to reflect, and I truly feel like God has been preparing me for this diagnosis since she was born (and probably even before).  Caroline and I have always had a special connection, but this has taken us beyond.  Her spirit inspires me every minute of every day...she's my light.  Every morning I wake up and remember she has cancer...it's like a nightmare groundhog day situation...but then she wakes up with a smile on her face, and I have a reason to fight through the sadness.  I feel more gratitude in my heart than ever before.  I cherish family time and friendships more than ever before.  I also feel so humbled by everyone that has shown up for us: family, friends, friends of friends, neighbors, co-workers, complete strangers!  My eyes are open, and my heart is forever changed.  I have had a lot of anxiety recently, probably because I am trying to mentally prepare myself for what is ahead.  I've already spent so many nights holding my daughter in the middle of the night in the hospital bed, as poison is pumping into her little body, aching and wishing I could take her place...I'm not looking forward to more nights of that, and we haven't even gotten to the hard part yet.  Thank you, thank you, thank you, for holding us up and walking us through this devastating time...I can't say that enough.  Thank you. 

From Andrew:
To quote him directly..."I'm good."  You don't get too much out of this 10-year-old boy, but we think he is doing as well as we can expect.  His routine has stayed relatively normal with school and sports.  He plays with his friends every chance he gets and does all of the usual "stuff" kids do at his age.  He's very protective and loving to Caroline, but they still annoy each other like typical siblings!

From Caroline:
(We asked her if she had anything to say to everyone who is praying for her)

Caroline's surgery is scheduled for 8am on Friday (4/27).  The surgery is expected to last about 6 hours.  The tumor will be removed, and she will also have a Hickman line placed (in addition to the port-a-cath she already has).  We are going to lay low for the rest of the week and just spend time together as a family.  Mark will post an immediate update on Facebook when she is out of surgery, and a blog post will follow later that day.  Thank you in advance for all of the prayers and thoughts that will be lifted in her name on Friday.  We have faith in God, confidence in her surgery team, and comfort in all of your thoughts and prayers.

***If you have any #carolinestrong gear, please wear it on Friday and think of her.  If you don't have any, please wear yellow/gold, which is the awareness color for childhood cancer.

Words will never be able to adequately express our gratitude,
The Lantz Family
#carolinestrong
#ftgf