Admitted to Vandy for High Fever

After an unplanned visit to the outpatient clinic at Vanderbilt yesterday for high fever (103.7), we found ourselves back there again today.  Caroline's fever failed to break overnight, after 24 hours of Tylenol, and she was looking/feeling worse this morning, so we returned to clinic today for more tests.  After consulting with her medical team, and based on her risk factors, they decided that she needed to be admitted for at least 48 hours.  So far, they have tested for (and ruled out) the flu and strep, but they proactively put her on an IV antibiotic.  They will monitor her counts and fever over the next couple of days, and we are hoping that she can improve quickly and get home for the weekend!  Although this isn't really where we want to be, with her compromised immune system, it is better to play it safe than sorry, and make sure she isn't at risk of seizure or other issues that can accompany a high fever and virus.

So, tonight, we will spend another night eating dinner together as a family, on a plastic couch in a hospital room on 6A.  There really are no routine or easy days for us right now (Dad, Mom & C), and we know how hard this must be on Andrew.  We hate that he has to go through all the back and forth and uncertainty that has become our lives.  We hope he one day understands...and maybe one day we will understand all of this, too.

We will keep the blog updated as things progress this week.

Thanks for hanging in there with us along the long, long way.

The Lantz Family

#carolinestrong

#ftgf

Back Home!

Caroline was discharged from Vanderbilt today, after completing Part 2 of Round 4 of inpatient Immunotherapy treatment.  Other than some clinic appointments, she will now will have about 3 weeks to rest at home before going back inpatient for Round 5 of Immunotherapy.  She is doing well so far, and is weaning off pain meds, which are currently taken orally every 4 hours for stomach and leg pain (common side effect from the antibody infusion).  So far, there are no other visible side effects lingering from the weekend...prayers up and fingers crossed that this remains the case!!!

During Round 4 of Immunotherapy, she was able to get nearly 100% of the cancer-fighting antibody drug, Unituxin, and about 50% of the immune system booster infusion, IL-2.  Unfortunately, the combination of both drugs together was just too much on her body for all 4 days, so her team (including us) decided it was best to continue with just the antibody (Unituxin), and discontinue the IL-2, which is considered a lesser priority drug for this round.  This adjustment/discontinuation is not uncommon this late into immunotherapy; their bodies are weak and worn from 14 months of toxic treatment.  It was a hard decision, and not taken lightly, but luckily, her blood counts remained ok throughout the stay, and we were pleased with their explanation and quick reaction to adjust this round's protocol.

It's been a stressful, draining and exhausting couple of weeks, and we are all looking forward to spending quality family time together - under one roof - over the next few weeks!

THANK YOU for all the continued support and prayers!
The Lantz Family
#carolinestrong
#ftgf

Packed up and heading out of 6A, with assistance from Mr. Seth! 

Hard Times - Immunotherapy Day 2

Caroline is now into Day 2, of Part 2, of Round 4 of Immunotherapy, and has really struggled with the side effects.  Fever, fluid retention, loss of appetite and severe mood swings have been present so far, but most notably (as pictured below), she had a severe reaction to the tandem infusions, which resulted in very bad skin hives/rash. As a result, her Oncology team decided to temporarily pause all treatment, in hopes the rash would subside...which it did...so they slowly restarted treatment again late this morning, after adding a Hydrocortisone shot and an increased dose of Benedryl to her pre-infusion meds regimen.  She is on quite a bit of scheduled medication around the clock, to keep the side effects manageable.  So far today, this approach has worked, and she will hopefully be moved back onto a full dose of IL-2 and Antibody over the next 24 hours.  We are praying hard for no more issues or pauses in treatment, and hoping she can finish this round on Monday as planned!

We will update the blog if there are more delays, otherwise we will update again next week when she is discharged and home.

Thank you for all the continued well wishes, prayers and UberEats gift cards you send our way.  They really help us get through these hospital stays and hard times!

Much appreciated!
The Lantz Family
#carolinestrong
#ftgf

Round 4 Immunotherapy: Half-time!

Caroline is now home for a 48-hour planned break in between treatments for Round 4 of Immunotherapy.  She is resting comfortably after a relatively uneventful 5 day admission for the IL-2 infusion.  Her only notable side effects from Part 1 of this round were fever and diarrhea, which aren't bad, considering what she will be facing later this week during Unituxin/IL-2 combination infusion.

She will get re-admitted on Wednesday, and most likely need a blood transfusion before she starts Part 2 of Round 4 on Thursday morning, as a result of low hemoglobin levels.  Expected side effects once the tandem infusion begins are: extremely high fever, severe nerve pain (and generalized pain), itching, intense irritability/mood swings, low oxygen levels, diarrhea, nausea and loss of appetite.  We have gone through this tandem infusion round before (around Thanksgiving), and it truly is beyond hard and stressful to watch her body endure this much.

Please pray for her comfort during the remaining part of Round 4, as well as for the rest of our family as we watch her go through one of the worst weeks of her entire treatment protocol.

Thank you for your continued love and support these past 14 months; we're so grateful!
The Lantz Family
#carolinestrong
#ftgf

Round 4 Immunotherapy - Inpatient Admission

After enjoying a couple weeks of "normalcy" at home, Caroline was admitted to the 6A-floor at Vanderbilt this evening for Part 1 (of 2) of Round 4 (of 6) of Immunotherapy treatment.  Treatment will begin in the morning, and she will be once again be on various drugs for nerve pain and nausea throughout the stay.

Assuming no set backs, and all goes as planned, her next 2 weeks will look like this:

• 5 night inpatient stay for IL-2 Drug (which is used to stimulate the body's immune system)
• 2 night break (rest at home!)
• 5 night inpatient stay for combination of IL-2 Drug and Unituxin Antibody (drug used to target Neuroblastoma cells) 

We expect a very difficult upcoming couple of weeks for Caroline...her body is really worn down and tired from the last 14 months of super intense treatment.  Please pray for her comfort, and for minimal side effects over the next 2 weeks.

Thank you for all the support!!!
The Lantz Family
#ftgf 

#carolinestrong

Home / Next Steps

Caroline experienced significant improvement overnight with her oxygen levels, and her lungs were clear when she woke up, so we were able to be discharged this afternoon.  The year is already off to a great start!

Next steps: Caroline has clinic appointments, daily shots and numerous oral medications between now and her next admission for Round 4 of Immunotherapy, which is scheduled for mid-January.  As always, we will keep you posted on this blog.  Thank you so, so much for the continued thoughts and prayers.  Happy 2019!

The Lantz Family
#carolinestrong
#ftgf