Caroline went to the clinic yesterday for her weekly counts check-up. Her counts were super low, so we ended up staying at clinic for 6 hours so she could get a red blood cell transfusion, as well as platelets. It's so crazy to watch how the transfusions literally give her energy as it's flowing into her body! Her white blood cell count/ANC are basically zero, so we will do our usual routine of staying close to home. Hopefully, she won't get a fever (or anything else) between now and next Friday, when we go back to clinic. Her CT Scan is scheduled for April 10th, and we are looking forward to getting answers on the next steps after that scan.
We hope everyone has a great holiday weekend! Happy Easter!
The Lantz Family
#carolinestrong
#ftgf
November 2017: diagnosed with Stage IV, High-Risk Neuroblastoma; Nov 2017-April 2019: completed standard treatment protocol / no evidence of disease; April 2019-April 2021: enrolled in/completed DFMO clinical trial; April 2022: RELAPSE; April 2022-June 2023: completed relapse treatment protocol / no evidence of disease (again); June 2023-June 2024: enrolled in “compassionate use” high-dose DFMO clinical trial; June 2024: RELAPSE #2
Saturday, March 31, 2018
Saturday, March 24, 2018
Clinic Update / Rally Foundation
Caroline had great numbers at her clinic appointment yesterday, so it was a quick/uneventful visit! We will go back next week to check her counts, and then she will have a CT Scan the following week. The CT scan results will then determine next steps...another round of chemo or move forward with surgery. So, barring anything unforeseen, we will be hanging out at home for a couple of weeks.
As the time since Caroline's diagnosis has passed, and we've gotten more used to our "new normal," we have been fortunate enough to get connected to some very progressive research foundations. Most recently, Caroline was nominated to be a "Rally Kid" for the Rally Foundation. She has her own profile on their website, and the foundation does amazing work that directly benefits the research at Vanderbilt Children's Hospital. You can read more about the foundation here, and click here to see Caroline's Rally Foundation page.
Caroline was also asked to be a model for their upcoming Rally on the Runway event on April 19th. Assuming she isn't having surgery that week, or gets a fever, she will be walking down the runway with a Titans player! She's very excited! If you are interested in attending the event, you can purchase tickets here.
We hope everyone has a great weekend!
The Lantz Family
#carolinestrong
#ftgf
As the time since Caroline's diagnosis has passed, and we've gotten more used to our "new normal," we have been fortunate enough to get connected to some very progressive research foundations. Most recently, Caroline was nominated to be a "Rally Kid" for the Rally Foundation. She has her own profile on their website, and the foundation does amazing work that directly benefits the research at Vanderbilt Children's Hospital. You can read more about the foundation here, and click here to see Caroline's Rally Foundation page.
Caroline was also asked to be a model for their upcoming Rally on the Runway event on April 19th. Assuming she isn't having surgery that week, or gets a fever, she will be walking down the runway with a Titans player! She's very excited! If you are interested in attending the event, you can purchase tickets here.
Making cookies for her clinic nurse before heading to the hospital on Friday.
We hope everyone has a great weekend!
The Lantz Family
#carolinestrong
#ftgf
Sunday, March 18, 2018
Ride for Caroline - Thank you!
A HUGE THANK YOU to everyone that showed up for "Ride for Caroline" at CycleBar Franklin today! Thank you to CycleBar for opening their doors, and to McKay's Mill Dental for coordinating the event.
We're so fortunate that our community, close and far, have - and continue to - show up for Caroline and our family. It never ceases to amaze us. Today's event was inspirational, emotional and a crazy-hard workout!
"Sometimes, the bravest thing and most important thing you can do is just show up..." (Brene Brown)
Thanks for always showing up for us,
The Lantz Family
#carolinestrong
#ftgf
Friday, March 16, 2018
FINALLY!!! Admission for Chemo - Round 5
Caroline (finally!) met all of her requirements for "counts," and has been admitted for round 5 of chemo!
Thank you for all the prayers and positive vibes to help push us to this point!
Much Love,
Team Lantz
#carolinestrong
#ftgf
Wednesday, March 14, 2018
Random Updates
We are heading into the clinic Friday, and are hoping that Caroline's ANC counts (and all other counts!) are high enough to start round 5 of chemo, after being rolled 3 weeks in a row. We know that our pray warriors are behind us, and we're praying hard with you.
Kindergarten Registration
Margaret registered Caroline for Kindergarten on Tuesday. Although Caroline will not be able to attend Kindergarten at school, Williamson County offers "Homebound Instruction," which means Caroline will be taught at home (or in the hospital), until her immune system is strong enough to brave the petri-dish of germs at school.
Registration was a really rough day for Margaret. Although we've spent a few major holidays in the hospital already, this was the first real milestone that felt different, thanks to cancer. Many parents were able to bring their kids to registration - sign them up for Kindergarten Camp, Sneak-A-Peek, meet Officer Boyd, meet the teachers, etc. Our version: Caroline wasn't able to go, Margaret wore sunglasses to hide the tears while she filled out the forms, and broke down in front of the principal (sorry, Mrs. Schwartz!). As we quickly learned after Caroline was diagnosed, we are not in control...but sometimes it's still hard to let go of the vision we had for her...what Kindergarten registration would be (such a fun, big-girl day!)...Andrew and Caroline riding the bus together for the first (and only!) year they would be at the same school...
Although it wasn't how we imagined, Caroline will still "go" to Kindergarten, and we are truly grateful for every.single.day.
Preds Game
We've mostly been hanging out around the house all day, every day, but we were able to get out as a family on Tuesday night to see the Predators vs. Jets game at the Bridgestone Arena. Thanks to goalie Pekka Rinne, we enjoyed a Suite with other patients, and their families, from Vanderbilt Children's Hospital. It was great to be out in public, all together, doing something fun and "normal." We're so thankful that he's sponsored an isolated space for immunocompromised patients.
CycleBar Class for Caroline THIS SUNDAY (3/18) at 12pm!
If you are in the Nashville area, CycleBar is hosting a spin class for Caroline. Click here to sign-up. Hope you can join us, and major shout-out to Brenna, Anna, and everyone at McKay's Mill Dental for coordinating this event!
T-Shirts Still Available
If you ordered t-shirts before March 11th, they should be shipping on/around March 19th. The fundraising website automatically opened another campaign because of the high volume of requests (Yay Team Caroline supporters!!!). That campaign will end April 4th, and will ship around April 9th. If you would like to purchase the #carolinestrong gear, click here.
Thank you for your continued support and prayers - we feel it, and it's helping us get through each day.
Hoping and praying for HIGH counts on Friday,
The Lantz Family
#carolinestrong
#ftgf
Kindergarten Registration
Margaret registered Caroline for Kindergarten on Tuesday. Although Caroline will not be able to attend Kindergarten at school, Williamson County offers "Homebound Instruction," which means Caroline will be taught at home (or in the hospital), until her immune system is strong enough to brave the petri-dish of germs at school.
Registration was a really rough day for Margaret. Although we've spent a few major holidays in the hospital already, this was the first real milestone that felt different, thanks to cancer. Many parents were able to bring their kids to registration - sign them up for Kindergarten Camp, Sneak-A-Peek, meet Officer Boyd, meet the teachers, etc. Our version: Caroline wasn't able to go, Margaret wore sunglasses to hide the tears while she filled out the forms, and broke down in front of the principal (sorry, Mrs. Schwartz!). As we quickly learned after Caroline was diagnosed, we are not in control...but sometimes it's still hard to let go of the vision we had for her...what Kindergarten registration would be (such a fun, big-girl day!)...Andrew and Caroline riding the bus together for the first (and only!) year they would be at the same school...
Although it wasn't how we imagined, Caroline will still "go" to Kindergarten, and we are truly grateful for every.single.day.
Preds Game
We've mostly been hanging out around the house all day, every day, but we were able to get out as a family on Tuesday night to see the Predators vs. Jets game at the Bridgestone Arena. Thanks to goalie Pekka Rinne, we enjoyed a Suite with other patients, and their families, from Vanderbilt Children's Hospital. It was great to be out in public, all together, doing something fun and "normal." We're so thankful that he's sponsored an isolated space for immunocompromised patients.
CycleBar Class for Caroline THIS SUNDAY (3/18) at 12pm!
If you are in the Nashville area, CycleBar is hosting a spin class for Caroline. Click here to sign-up. Hope you can join us, and major shout-out to Brenna, Anna, and everyone at McKay's Mill Dental for coordinating this event!
T-Shirts Still Available
If you ordered t-shirts before March 11th, they should be shipping on/around March 19th. The fundraising website automatically opened another campaign because of the high volume of requests (Yay Team Caroline supporters!!!). That campaign will end April 4th, and will ship around April 9th. If you would like to purchase the #carolinestrong gear, click here.
Thank you for your continued support and prayers - we feel it, and it's helping us get through each day.
Hoping and praying for HIGH counts on Friday,
The Lantz Family
#carolinestrong
#ftgf
Thursday, March 8, 2018
3rd Delayed Admission
We took Caroline to clinic today hoping she would be admitted for Round 5 of Chemo...her ANC counts (neutrophils) were too low, so she wasn’t admitted. We’ll try again next Friday.
It’s very frustrating because there is nothing we can do to help her body recover faster; we literally just have to wait at home for another week to pass, and check again.
Many people have asked if the admission delays are negatively affecting her treatment progress/cancer growth...the truth is, we don’t know...and neither do the doctors...but you can't get chemo with low ANC counts.
Thanks for your continued prayers, we appreciate all of the support.
The Lantz Family
#carolinestrong
#ftgf
It’s very frustrating because there is nothing we can do to help her body recover faster; we literally just have to wait at home for another week to pass, and check again.
Many people have asked if the admission delays are negatively affecting her treatment progress/cancer growth...the truth is, we don’t know...and neither do the doctors...but you can't get chemo with low ANC counts.
Thanks for your continued prayers, we appreciate all of the support.
The Lantz Family
#carolinestrong
#ftgf
Best part of clinic: Caroline and Molly were able to spend time together!
CarolineSTRONG T-Shirts are on sale until March 11th: click here to purchase.
Tuesday, March 6, 2018
Happy Birthday, Andrew!
Happy 10th Birthday, Andrew!
We're so proud of how you're handling your sister's diagnosis; she's so lucky to have such a protective and sweet brother!
Unconditional love forever and ever,
Mommy and Daddy
We're so proud of how you're handling your sister's diagnosis; she's so lucky to have such a protective and sweet brother!
Unconditional love forever and ever,
Mommy and Daddy
Friday, March 2, 2018
100 Days by the Numbers...
Today marks 100 days since Caroline was diagnosed with Neuroblastoma. We aptly spent the day in the Vanderbilt clinic, even though we were just there yesterday because Caroline was spiking a fever this morning. A bunch of tests and an IV antibiotic later, we are headed home.
We've recorded pretty much every detail of this journey, so here are some stats to date:
46 Pokes (port access/shots)
29 Overnights at the hospital
21 IV antibiotic infusions
17 Chemo treatments
15 Clinic visits
11 X-Rays
9 Blood transfusions
3 Platelet transfusions
Surgeries/Sedation, Biopsies, CT Scans, MRI, MIBG Scan, EKG, Echo-cardiogram, Stem Cell Harvest, ER Visits...
Countless blood panels, urine screens, vital sign checks, bags of fluid...
Hair loss.
Isolation.
Syringes, bottles, and bags of medicine.
Waiting. So.much.waiting.
Packing bags. Unpacking bags. Loading the car. Unloading the car.
The last 100 days have been a living hell...with no end in sight any time soon. It is the hardest thing we've ever had to do. This road is long, and one we wish no family ever had to face.
BUT, on this already long and windy road, we have witnessed more generosity, kindness, thoughtfulness, community, friendship, prayers, and love to truly last us a lifetime. Our hearts have grown, and we are forever changed. We will happily be paying this forward for the rest of our lives.
Thank you for walking with us through this journey...we can't imagine doing it without you all.
And most importantly, Caroline is happy, strong-spirited, and inspiring our family every day!!!
Love and more love,
The Lantz Family
#carolinestrong
#ftgf
We've recorded pretty much every detail of this journey, so here are some stats to date:
46 Pokes (port access/shots)
29 Overnights at the hospital
21 IV antibiotic infusions
17 Chemo treatments
15 Clinic visits
11 X-Rays
9 Blood transfusions
3 Platelet transfusions
Surgeries/Sedation, Biopsies, CT Scans, MRI, MIBG Scan, EKG, Echo-cardiogram, Stem Cell Harvest, ER Visits...
Countless blood panels, urine screens, vital sign checks, bags of fluid...
Hair loss.
Isolation.
Syringes, bottles, and bags of medicine.
Waiting. So.much.waiting.
Packing bags. Unpacking bags. Loading the car. Unloading the car.
The last 100 days have been a living hell...with no end in sight any time soon. It is the hardest thing we've ever had to do. This road is long, and one we wish no family ever had to face.
BUT, on this already long and windy road, we have witnessed more generosity, kindness, thoughtfulness, community, friendship, prayers, and love to truly last us a lifetime. Our hearts have grown, and we are forever changed. We will happily be paying this forward for the rest of our lives.
Thank you for walking with us through this journey...we can't imagine doing it without you all.
And most importantly, Caroline is happy, strong-spirited, and inspiring our family every day!!!
Love and more love,
The Lantz Family
#carolinestrong
#ftgf
Literally waiting for the phone to ring with the CT Scan results on 11/24/17 (diagnosis day).
So much packing and unpacking for each hospital visit!
Hanging in there...
Thursday, March 1, 2018
Delayed Admission (again) / Surgery Update
We went to clinic today expecting to be admitted for round 5 of chemo, but Caroline’s immune system counts (ANC/neutrophils) weren’t high enough. We will try again in one week - very disappointing, but out of our control.
Before clinic, we met with Dr. Chung, Caroline’s primary pediatric surgeon. He commented that when he saw Caroline’s original imaging (November), the manner in which her tumor had spread and was wrapped around/attached to her organs, that her resection surgery would be challenging. So far, he is pleased with how well she is responding to treatment, and is encouraged with her progress. Over the next week, Dr. Chung will be meeting with Caroline’s Oncology team to work up a surgical plan. At this point it sounds like there are 2 options for the next step in the process:
1) surgery to remove tumor (approximately 2-3 weeks after round 5 of chemo, depending on counts)
2) complete an additional round (or rounds) of chemo prior to surgery to achieve even more shrinkage of the tumor
The surgical goal is to be able to remove 90-100% of the tumor, so they want to make sure they are setting themselves up to be able to safely do so; 90% removal would still be considered successful, as the remaining tumor can often be targeted with future chemo/radiation, already planned in her treatment protocol.
We will keep everyone posted when we have confirmation on the actual surgical plan.
As always, thank you for the prayers and well wishes. We love you all!
The Lantz Family
#carolinestrong
#ftgf
Before clinic, we met with Dr. Chung, Caroline’s primary pediatric surgeon. He commented that when he saw Caroline’s original imaging (November), the manner in which her tumor had spread and was wrapped around/attached to her organs, that her resection surgery would be challenging. So far, he is pleased with how well she is responding to treatment, and is encouraged with her progress. Over the next week, Dr. Chung will be meeting with Caroline’s Oncology team to work up a surgical plan. At this point it sounds like there are 2 options for the next step in the process:
1) surgery to remove tumor (approximately 2-3 weeks after round 5 of chemo, depending on counts)
2) complete an additional round (or rounds) of chemo prior to surgery to achieve even more shrinkage of the tumor
The surgical goal is to be able to remove 90-100% of the tumor, so they want to make sure they are setting themselves up to be able to safely do so; 90% removal would still be considered successful, as the remaining tumor can often be targeted with future chemo/radiation, already planned in her treatment protocol.
We will keep everyone posted when we have confirmation on the actual surgical plan.
As always, thank you for the prayers and well wishes. We love you all!
The Lantz Family
#carolinestrong
#ftgf
Today, Caroline decided she wanted to sit by herself to get her port accessed...so tough...she didn't even flinch with the poke!
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