TWO YEARS since diagnosis - where are we now?

It’s hard to believe we’ve hit the two year “cancer-versary” of Caroline’s diagnosis: November 24, 2017. We feel so many things, but mostly just grateful. Her original diagnosis was on Black Friday, and last year we were inpatient for Thanksgiving AND her one year mark...we are continuously reminded of how much we have to be thankful for, regardless of the holiday, or what the future holds.

The biggest blessing is that Caroline is alive and still has NO evidence of disease! She is on a clinical trial drug to (hopefully!) prevent relapse, and so far, so GREAT! She takes 6 pills a day, but relative to what she’s been through, it’s nothing. She is thriving in Kindergarten, was able to play soccer this Fall, and is enjoying being a Daisy Scout. She loves hanging out with her friends and having the freedom to do things that involve germs! She still loves singing, dancing, talking to everyone she meets, all things American Girl Dolls, and of course, her BFF dog, Hank.

Andrew has had his own version of challenges during this process, but he is resilient, strong, and protective of his little sister. He seems to have bounced back and is in full-on tween mode (fun times). He's loving all the new-found freedom Middle School has to offer, and is still football’s #1 fan!

As for Mark and Margaret...we’ve been trying to find or new “normal” over the past 6 months. Margaret went back to work full-time in September, and Mark has been steadfast in keeping our family together and supported; he's been our rock. PTSD is real, and it’s something that weaves in and out of our house regularly. We process and cope differently, but try to take each day, hour, minute as it comes, and practice patience.

As a family, we’ve slowly been able to show up for the community that carried us through, and it feels so good to be able to pay it forward and care for others. We’ve also been able to champion some causes that we so strongly believe in: BeatNB.org, Make-A-Wish, Children’s Miracle Network, and of course, the Monroe Carrel Jr. Children’s Hospital at Vanderbilt!

We will continue to use the blog to update as Caroline gets required scans throughout the rest of her clinical trail (approximately 18 more months). Thank you for pouring your love, support and prayers into our family…you have sustained us through the past 2 years.

Looking forward to the new year and new decade!

All the best to you and yours,
The Lantz Family
#carolinestrong
#ftgf

HOME!

Caroline was discharged from Vanderbilt tonight and is already feeling MUCH better!  She will be on an oral antibiotic for 12 days, but other than that, she has no restrictions and can get back to enjoying the rest of her summer.

Thank you for all the prayers!

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!!!

Back on Oncology Floor

Caroline was moved back to 6A from the ICU at 5pm today!  Her blood pressure is stable, she isn't requiring oxygen, and she is currently resting with IV fluids and pain control medication. She will start NG tube feeds tonight and hopefully start drinking water or juice again soon.  She will be tested daily via blood cultures to make sure the bacterial infection is exiting her system, which is the first step to being considered for discharge next week.

Although she's made great progress, another issue popped up right before we were being transferred out of the ICU: one side of her double lumen hickman line (central line) is clogged and not flushing at all.  We are awaiting the surgical team to assess and see if it can be fixed bedside (or magically clear up!).  We're told that these types of clogs typically are related to bacteria clinging to the inside of the line, or possibly a blood type clot/obstruction in the line.  We will keep this blog updated when we find out the actual cause and resolution.  Please pray that this can be resolved without having to replace the entire line, which would require sedation and surgery.

We are all completely zapped...mentally and physically...and need a little stretch without any more surgeries, setbacks or surprises.

Lantz Family
#carolinestrong
#ftgf

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

Back in Hospital / No call yet from Cincinnati Children's

Caroline was admitted back into Vanderbilt this afternoon for fever, extreme nausea and pain (back, belly, legs).  They will run some tests this evening to try and determine the causes of these symptoms.  Additionally, we are still awaiting an initial call from Cincinnati Children's to discuss the planning and timing of the upcoming Proton Radiation treatment.

We will keep the blog updated as information comes in regarding both this admission, and plans for radiation treatment in Cincinnati.

Thankful for any and all prayers,
Lantz Family
#carolinestrong
#ftgf