Sunday, December 18, 2022

Rough Cycle 10 Complete

Caroline has been discharged from Cycle 10 - the toughest cycle she’s had since her relapse. In addition to the “regular” side effects of nausea, diarrhea, fevers, and pain, she had extreme nerve pain and a broken spirit…which was arguably worse than all of the harsh side effects combined.

On Wednesday, Caroline woke up out of her sleep crying in pain - the worst pain we’ve seen her in since she was admitted to the ICU in 2018.  Nerve pain is an unfortunate (but expected) side effect of the antibody therapy that can come and go at any point.  She’s always experienced nerve pain during each cycle, but it's been manageable with her continuous Dilaudid infusion.  However, this "extra" nerve pain was extreme and came out of nowhere…literally waking her up in the middle of the night.  Her team worked quickly and diligently to get the pain under control, but it took a while to get her comfortable. It was beyond excruciating to witness her agony without being able to do anything, and we can only imagine the pain she felt.

Besides the physical pain, Caroline was in true emotional pain this week.  This cycle came on the heels of her two additional inpatient stays for Sapovirus and RSV.  She didn’t really get a chance to recharge and do “normal” things in between the two cycles, which really took a toll on her mental health.  One major difference between Caroline going through treatment this time around vs. the first time, is her awareness of what she's "missing out on" socially.  This is such a fun time of year for kids, and missing so many Christmas parties and events had her crying A LOT.  Knowing her friends were having fun at school while she was at the hospital laying in pain had her asking some un-answerable questions: “why is this happening again?;” “why isn’t life fair?.” Her spirit was broken this cycle, and we’re praying she gets some solace in the days ahead, even though we can’t go back in time to let her experience all the missed Christmas fun things, or answer her hard questions.  This is one cycle we will all be processing long after.  

Caroline's next cycle is scheduled for 1/3/22, so barring anything happening in between, we’re hoping to be able to spend the next 2 weeks at home creating some Christmas magic for our family.

Thank you to everyone who sent us UberEats gift cards…they are a huge help because Caroline won’t eat any of the hospital food, and we still aren't allowed visitors.  

Thank you so much for the continued prayers - specifically for her comfort and peace.   

Wishing you all a very Merry Christmas season, 
The Lantz Family

Caroline was having trouble breathing...the X-Ray showed "third space fluid" in her chest (Lasix and Oxygen to the rescue).

Tuesday, December 13, 2022

Admitted for Cycle 10

Caroline was admitted for Cycle 10 (of 17) yesterday, following a really rough month of being in and out of the hospital.  Please pray for an "uneventful" cycle and minimal side effects are much appreciated!

The Lantz Family

PS - we've gotten quite a few requests on how to help...currently, the best way is by providing meals for the hospital via UberEats (sent to  Y'all are so generous, thank you!  

Cycle 10 in progress...

HUGE shoutout and thank you to Michelle Prichard...she's decorated Caroline's room for EVERY single planned inpatient stay for the past FIVE years!  Caroline always gets so many compliments on her room, and it makes a huge difference in the atmosphere...  
We love you, Michelle!

Monday, December 5, 2022

Unexpected Admission for RSV / Scan Results Update

Caroline was discharged today, after almost a week of being inpatient for a rough case of RSV. She had fevers as high as 105 degrees, and low oxygen levels for almost 5 days (requiring oxygen assistance). We are so glad she's turned the corner, is no longer contagious and is now recovering at home, showing us all her typical Caroline energy and attitude!  

The past couple months have been a roller coaster, to say the least...delayed chemo treatments, multiple ER visits, unexpected inpatient admissions for Sapovirus and RSV, as well as delayed progress scans.

Here are the results of her bone marrow and scans from the last week:
  • Bone Marrow Biopsy - No Evidence of Neuroblastoma Cells
  • CT Scan - Inconclusive because of the RSV thickness in her chest
  • PET Scan - Inconclusive because of the RSV thickness in her chest
We will now need to re-do her CT and PET scans in about 6 weeks, when all that congestion is cleared from her body.

Caroline is scheduled to be admitted Monday (12/12) for cycle 10 of chemo and immunotherapy.

We are all beyond exhausted, but so thankful for your prayers and support!

The Lantz Family