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

Rough Week

Caroline is on the tail end of round 2, part 2, of Immunotherapy...the nurses have hung the last couple infusion bags, and everything should be complete by tomorrow.  It's been a really, really, really rough week on her body - probably one of the hardest since she's been diagnosed.  She has had all of the predicted side effects: nausea/vomiting, diarrhea, severe nerve pain, generalized pain, fluid retention, rash/itching, low blood pressure, low oxygen saturation, and extremely high fevers.  Some of her fevers have been so high they didn't even register on the thermometer, which goes up to 105 degrees!  While all of these are considered "normal" side effects for this treatment, it is still very scary and upsetting to watch.  Luckily, the team at Vanderbilt has been able to make Caroline as comfortable as possible, and she's even been able to "rest" a little.  We are hoping to head home this weekend.  As you can (or maybe cannot) imagine, this is mentally exhausting and draining for all of us, so thank you for the prayers for comfort this week, we really appreciate each and every one.

The Lantz Family
#carolinestrong
#ftgf

A Better Day / Local Fundraiser

Caroline’s fever looks like it has finally broken (hope this doesn't jinx it!)!  She has been fever-free since 7am this morning, and we're so grateful for the improvement.

She does have a little fluid retention /swelling as a result of some of the treatments she's received, but it doesn't seem to be a major concern at this time.  We are also monitoring a new, mild body rash that seems to be spreading, with no clear indication of the cause (yet).  Luckily, it's not currently itching her, but it is a concern that we will monitor and hope for a resolution ASAP.

The Vandy team started Caroline back on her NG tube feeds this afternoon - she will slowly increase the dose until she is able to tolerate at least 75% of her nutritional needs; she will continue these feedings at home (whenever we get back there) until she can/does eat proper nutrition on her own. The high-dose chemo and mucositis really effected her GI tract, and she hasn't wanted to eat or drink much at all over the past few weeks.  She is also able to take her oral medications through the NG tube, which is a huge help while she's still recovering from the pain of mucositis.

We expect to be in the hospital at least a couple more days, or until she is "healthy" enough to return home.

Local Nashville friends: please click the link below to check out this awesome family fun event that Autumn Jones has put together to honor Caroline. Thank you very much, AJ, and all of the supporters!

https://www.eventbrite.com/e/carolinestrong-party-fundraiser-tickets-46769774655?ref=eios&aff=eios

Many Thanks!
Team Lantz
#carolinestrong
#ftgf

Thank you for sharing your unicorn cookies, Arlie!

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.