This blog documents Caroline's cancer journey. November 2017: Diagnosed with Stage IV, High-Risk Neuroblastoma...April 2019: Completed treatment protocol and declared to have no evidence of disease; enrolled in DFMO Clinical Trial...April 2021: Completed DFMO clinical trial...April 2022: Neuroblastoma Relapsed...June 2023: Completed treatment protocol and declared to have no evidence of disease; enrolled in “compassionate use” high-dose DFMO clinical trial.
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.
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!!!
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!
The Lantz Family
Same snowman, same strong girl!
A commemoration pie (homemade by Andrew!), and a video message from Caroline...
"Nurse mommy" changing Caroline's central line dressing.
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
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.
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!!!
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,
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!!!