Admission for Round 3 of Immunotherapy / Christmas Joy

Caroline was admitted today for Round 3 of Immunotherapy.  Starting tomorrow morning, she will receive a 20-hour per day infusion of Unituxin Antibody, as well as a Dilaudid PCA for pain management during the entire treatment, which is scheduled to end on Monday.  Once again, we expect significant side effects, including: high fever, low oxygen levels, extreme nerve pain, nausea, diarrhea, rash and low blood pressure.  Watching her go through this part of treatment is not easy for us, but we hope it's all working to destroy the remaining Neuroblastoma tumor in her abdomen, as well as any free-floating cancer cells.

Like many folks this time of year, Caroline is fighting off some kind of virus, with a particularly bad-sounding cough.  Being immuno-suppressed makes it more difficult for her to fight any type of virus, so the medical team will be keeping an extra eye on her cough/congestion this week.

Caroline is on her last day of the antibiotic she's been taking 4x/day for the last 3 weeks for her C-Diff infection; she will be retested for C-Diff again later this week.

Last year we spent Christmas in the hospital, and this year we were fortunate enough to be able to spend it quietly at home.  Huge shout-out to our friend, Farrah and her "Friends of Caroline," who helped us coordinate gifting Christmas cash to all 19 Pediatric Oncology families that spent Christmas Day in the hospital.  We are very grateful for their generous hearts, and we know first-hand that many of the families were overcome with joy when those cards and blessings were delivered to their hospital rooms on Christmas day!  We hope we can build on this as one of the ways we give back, and make it an annual tradition.

Thank you for all the prayers and Christmas wishes sent our way; we truly appreciate each and every one of you!

The Lantz Family
#carolinestrong
#ftgf

PS: As you can see in the pics below, Caroline had a fun Christmas week of play dates with her friends and family!

C Diff / Caroline's Story

Caroline has had an especially hard time bouncing back from Round 2 of Immunotherapy.  In addition to recovering from the numerous side effects, she ended up getting C Diff (again, or maybe it never went away?).  She spent Monday, Tuesday and Wednesday at the clinic for labs/panel tests, an x-ray, and lots and lots of fluids.  The C Diff medicine seems to be kicking in, and she has been acting a little more like herself.

If you would like to hear Caroline's diagnosis story and treatment journey (so far), tune into 107.5 The River (also available on I Heart Radio if you're not local) tomorrow at 11am CST.  We will be live on the radio to tell her story, hopefully creating awareness and raising money for the place that is trying to save our daughter's life.  We love Vanderbilt so much, and are honored they asked us to participate.  You can listen online by clicking here; we hope you tune in!

Thank you for your continued prayers through this extra-difficult few weeks.

The Lantz Family
#carolinestrong
#ftgf

Mucositis Pain / C. Diff / Rash Update / Fever

Caroline is still in really rough shape overall.  She has severe pain from the mucositis that has spread throughout her GI tract, which is a major side effect of the high-dose chemo and not having an ANC (immune system).  She is also still struggling with the pain and effects of C. Diff, which she will be tested for weekly, until she tests negative for the infection 2 weeks in a row.  Her pain is being managed by both a continuous morphine drip and a demand push-button.  She's also been fighting off a fever for the last few days.  We are grateful that Caroline is no longer dealing with the rash that lasted for 7 days, and she has not complained about any severe itching for the past several days.  Her day primarily consists of laying in bed, with an occasional trip to the couch to play with her baby dolls.

We are hoping that she begins to turn the corner over the next several days.  The first indicators will be an improved ANC, and less pain in her mouth/throat and GI tract.  She has not been able to eat or drink in over a week, but is receiving nutrition through her NG feeding tube and IV fluids.

Thank you for all the love and support!

Lantz Family
#carolinestrong
#ftgf

Changing the lines/IV bags...so many medications hooked up at once.

How she spends most of the day.

Peach fuzz hair will fall out again from this round of chemo.

Morphine push button.

She loves playing babies with Aunt Joanna!

Always trying to smile, no matter how she feels!

Rash / C. Diff

...and the rough days continue. We are 2 days post-transplant, and in addition to the side effects from the high-dose chemo we discussed in the last post (all of which she is still experiencing to various degrees), Caroline has since developed a terribly uncomfortable rash over most of her body, and tested positive for “C. Diff.”

Rash
The rash started Monday night, spread, and got progressively worse over the last 2 days...and, as luck would have it, is the most bothersome at night, so she’s barely been able to sleep. Caroline’s transplant team, oncology team, pharmacist, nutritionist and dermatology team have all been working together to determine the source and solution of/for the rash. They’ve basically thrown the kitchen sink at her to help ease the itchy symptoms, but unfortunately her rash is falling into a generic category, with an “unidentifiable source agent,” which is called a “morbilliform” rash. Because they can’t pinpoint exactly what’s causing the rash, they can only treat the symptoms. Treatment is in addition to the laundry list of medications she is already receiving, and includes: 3 IV medications, 1 oral medication (through NG tube), and various topical creams as needed. They do not know how long the rash will last, but best guess is another 5-7 days. She is very uncomfortable and having a hard time sleeping (as would anyone).

C. Diff
C. Diff is fairly common in the transplant/oncology world, due to the amount of antibiotics patients have to take. Ironically, the treatment is an(other) antibiotic. It’s a potentially life-threatening infection caused by a type of bacteria called clostridium difficile...aka: C. diff. It can cause colitis (a serious inflammation of the colon), or even more serious colon issues like toxic megacolon or bowel perforation. C. Diff is highly contagious, so Caroline will be on “contact precautions” for the duration of her stay, which is an even stricter level of isolation: everyone entering her room must wear gowns and gloves, Margaret/Mark can only enter or exit the hospital (no walking around the hallway or going to microwave/fridge/ice machine, etc.), and Caroline will not be allowed to leave the room - at all - until she is discharged, even as her ANC counts improve.

While it’s annoying to be literally confined to the room, and be completely dependent on nice people/nurses/care partners bringing you everything you need (like morning coffee!!!), we understand the severity of the infection, and how easily it can spread.

Caroline’s ANC/Neutrophil counts are zero, and we expect them to remain like that for another 7-10 days (or more). She’s getting daily Neupogen shots, and is resting when she can. She’s not talking too much, but using her thumbs up/thumbs down response to let us know how she’s feeling.

Caroline was finally able to smile and play for a little while today, for the first time in quite a few days, so that was a VERY happy for see.

We appreciate the help and visit we got this week from Pop-Pop and look forward to Caroline’s Aunt Joanna coming later this week!

Thank you for your continuous prayers for her comfort and healing.

The Lantz Family

#carolinestrong

#ftgf

Partial view of rash, which is over most of her body.