Thursday, May 31, 2018

She's turned the corner/Angel Nurses

Today, Caroline's ANC (absolute neutrophil count/immune system) was up to 750, which is great progress, considering she has been at 0 (zero) for a long stretch!  Among other things, she needs to have an ANC above 500 for 3 days in a row to be considered for discharge.  She is still on a laundry list of medications, and a little swollen from fluid retention, but barring any setbacks, we are on pace to go home Monday...1 week ahead of schedule!  We are VERY excited to all be together again in the same house!

Caroline will come home with her feeding tube for at least 4 days, or until she is getting enough nutrition through her regular diet.  We should be able to enjoy 5 weeks at home before the next round of high-dose chemo/stem cell transplant #2 (more details to follow, as we get them).

Once again, thank you to all the doctors, nurses and support staff at Vanderbilt!  Caroline is having a great time this week hanging with many of her nurse friends: Morgan, Josee, Abby, Deanna, Valerie, Ashley, Livvy, Jennifer, Caitlin, Sarah, Kate (welcome home!!!), and so many more...we are so blessed and grateful to have such wonderful people taking care of our daughter!

Thank you for all the prayers and support!

The Lantz Family
Arts and crafts with Nona!

Monday, May 28, 2018

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

Changing the lines/IV 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!

Wednesday, May 23, 2018

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.”

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

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

Monday, May 21, 2018

Stem Cell Transplant Day

Today was Caroline's Stem Cell Transplant!  She received her own stem cells that were originally collected from her stem cell harvest back on January 30th.  The actual "transplant" process was rather quick and painless.  The frozen stem cells were brought to the room in dry ice, thawed in warm water, and then slowly injected into Caroline's central line.  The entire process took less than 30 minutes.

The purpose of the stem cell transplant is to help rescue Caroline's immune system (called ANC/neutrofils) from the high-dose chemo she received last week.  If she didn't have this transplant, her immune system would not be able to recover.  She received 4 million cells per Kg (approximately 70 MILLION cells); the target dose was 2 million per Kg, so we hope that her recovery may be expedited with the additional potency.   It's expected to take a couple weeks for her ANC to increase to a safe level to be discharged, which is why we're on the extended hospital stay. Caroline will start receiving daily shots of Neupogen, beginning tomorrow, which will also help her begin to recover from the effects of high-dose chemo. 

This very challenging high-dose chemo and stem cell transplant process will be repeated again this summer (probably early July). 

Caroline has had the worst 3 days of her life this past Saturday through today, and the worst is yet to come.  So far, she has experienced the following side effects from the high-dose chemo: extreme nausea and emesis, belly pain, throat pain, insomnia, mucositis through her entire GI tract, bloody stool, loss of appetite, not drinking, and not talking (because her throat hurts).  This has been the hardest stretch on our family by far; it is absolutely torturous to watch, and we all feel very helpless.  Please pray for her comfort, and that she is able to rebound from this quickly.

Thank you all for the continued support.  We are very grateful for all the prayers, meals, help with Andrew, gifts, donations, visits...just everything! 

The Lantz Family

Child Life Services does an excellent job of not only prepping kids for what to expect during the transplant, but also celebrating the actual day!  They arrived this morning with a bag of new toys for Caroline to play with, since she isn't allowed in the playroom during this stay, and they made this awesome sign that matches her "rainbow theme..." we LOVE Vanderbilt!

Stem cells arriving on dry ice!

Bag of stem cells prior to thawing...

Stem cells thawed and in syringe, ready for injection.

Dr. Kaviany injecting the stem cells - she's amazing!

 Daddy love!

So many hookups...

Really not feeling well this round.

Friday, May 18, 2018

Feeding Tube / Day 3 and 4: High-Dose Chemo

Chemo #1 and the baths every 6 hours around the clock are thankfully behind us now!  Caroline is still getting Chemo #2 daily, with the last dose being tomorrow.  Sunday will be a day of "rest" before her stem cell transplant on Monday.

Caroline had a feeding tube (aka: NG tube) placed today to help with getting nutrition and the medications she has been taking orally into her system.  She's struggled with both eating and taking her meds the last couple of days, so having the tube will get her everything she needs, without worry.  The process of getting the tube inserted can be scary, but Caroline was a trooper (as usual!) and did a great job, with minimal crying.  The nurses and staff were absolutely wonderful during the procedure.  We cannot express in words how grateful we are to be here with this team at Vandy!

The Lantz Family

Wednesday, May 16, 2018

Bone Marrow Biopsy Results / Day 3 High Dose Chemo / Vanderbilt Team

Today we got the results back from the bone marrow biopsy, and they're encouraging.  Currently, Caroline's bone marrow has less than 1% of Neuroblastoma cells, down from 20-25% previously, and down from 90-100% originally.  We are all encouraged by the news and feel like Caroline is headed in the right direction overall.

We are now into the third day of high-dose chemo and the baths every 6 hours around the clock.  Caroline is more tired today and has been a little nauseous, but hanging in there.  We expect her to feel worse every day for the next couple of weeks.  Today is the only day of this high-dose chemo round that she will receive 2 types of chemotherapy. Tomorrow through Saturday, she will get chemotherapy once a day.

HUGE SHOUT OUT, and a big THANK YOU to the medical team here at Vanderbilt.  The personalized care they have given to Caroline, and always going the extra mile, really helps makes this miserable experience tolerable for our family.  We appreciate the nurses, doctors, therapies and social workers that go above and beyond the call of duty!

Many Thanks!
Team Lantz
Current mood...

Monday, May 14, 2018

Day 1: High-Dose Chemo

We're in our room and all settled.  Caroline got her first dose of chemo around 10:30am, and she's had her first scheduled bath.  The type of chemo that she gets seeps out through her pores, and can burn skin (hers and anyone that touches her), so she has to get baths every 6 hours, around the clock, until the day after she's finished taking this chemo (Thursday).  In addition to requiring extra bathing, she also has to change her pjs, get all clean sheets/blankets/stuffed animals, etc.   Margaret has to wear gloves when she touches her, change clothes when Caroline changes, and generally not come into skin-to-skin contact with Caroline.  The side effects are being well-managed right now, and we aren't expecting to see anything extreme until tomorrow. 

Walking into the hospital - 7:30am

Packed for a month!

1st thing to prep for chemo was: get her central line dressing off, as well as her steri-strips leftover from the tumor resection, so the dressings don't hold the chemo on her skin, and cause burns.

Playing "Nurse" with her baby doll.

Still smiling!

Friday, May 11, 2018

MIBG Scan Results / Monday's Admission and Schedule

Caroline’s transplant doctor called us yesterday while we were on the way home from the scan/biopsy with (to quote her) “very good news.” The MIBG Scan showed significant improvement and reduction of disease from surgery and chemo to date. Her Curie score is now a 1, down from 5 when we started in November. Any Curie score below 2 is usually a sign that patients will respond relatively well to the rest of the treatment protocol (still 12 months left!): high-dose chemo, stem cell rescue, radiation, and immunotherapy.

While we were at her clinic appointment today, we were able to view her scans alongside her original MIBG scan, and get more info on the most recent results.  The cancer that still exists is mainly contained in her pancreas area, which is what we suspected, based on her surgery, and the portion that her surgeon was unable to remove.  The medical team is satisfied with the results to date, and we will move forward with the treatment protocol as planned.

Caroline and Margaret will check into the hospital early Monday morning for approximately 30 inpatient days. The team is hoping to start the high-dose chemo by mid-morning on Monday.  Here is the schedule for the extended stay, as well as info for visitors:

  • Monday, 5/14: High-Dose Chemo, type #1 (requires baths every 6 hours, around the clock, to prevent skin burn)
  • Tuesday, 5/15: High-Dose Chemo, type #1 (requires baths every 6 hours, around the clock, to prevent skin burn)
  • Wednesday, 5/16: High-Dose Chemo, types #1 AND #2 (requires baths every 6 hours, around the clock, to prevent skin burn)  **this is expected to be the worst chemo day during this cycle, because she will be receiving both types of chemo on the same day**
  • Thursday, 5/17: High-Dose Chemo, type #2 (baths every 12 hours, to prevent skin burn)
  • Friday, 5/18: High-Dose Chemo, type #2
  • Saturday, 5/19: High-Dose Chemo, type #2
  • Sunday, 5/20: Rest
  • Monday, 5/21: Stem Cell Transplant Day!
  • Tuesday, 5/22 and beyond: Neupogen shots daily until ANC (neutrophils) is above 500 for 3 days in a row, and then remain inpatient, isolated for approximately 21 days, or until her ANC and blood counts recover to safe levels for discharge.
Caroline will not be able to have any visitors during this hospital stay because her immune system will be more compromised than ever before, due to the high-dose chemo.

We will know the bone marrow results by Monday, but the MIBG scan news is giving us renewed energy and hope!

Today is the last day to purchase this batch of t-shirts. Click here to order.

Thank you for your continued support for our family...we're ready for the next phase!

The Lantz Family

                                                Today's Clinic Check-up at Vandy

Monday, May 7, 2018

Information Overload: Prepping for High-Dose Chemo and Stem Cell Transplant

Today was a busy and tough day for all of us: back-to-back appointments from 8am-4pm, and a day full of listening to info that we're still processing hours later. We met with Caroline’s transplant team to discuss what’s on the horizon for the next week, sign consent forms, ask a laundry list of questions about the high-dose chemo/stem cell transplant (and the side effects), and get a general idea of what to expect during our extended stay.  Although we knew some information about high-dose chemo and the stem cell transplant process, this was the first time we heard it directly in relation to Caroline's treatment.  It's absolutely gut-wrenching to hear what she's about to endure.  The side effects of her forthcoming treatment are: mouth sores, mucositis (potentially through her entire GI tract), high fever, infection, liver and kidney issues, nausea, vomiting, diarrhea, loss of appetite, etc.  High-dose chemotherapy is similar to other 5 rounds of chemo she's had, only extremely amplified (hence the name and more extreme side effects).  We will post more info on Caroline's exact schedule later in the week, but as of now, she is scheduled to start the process on Monday, May 14th.     

Caroline's appointments today included:
  • Kidney function testing, which included a radioactive injection, as well as 5 separate blood draws/tests, to ensure Caroline’s liver will be able to tolerate the high-dose chemo, and to what degree
  • 2 urine tests 
  • RVP Nasal Swab (test came back negative for viruses - yay!)
  • EKG
  • Echocardiogram
  • Hearing Test (one of the many side effects of the chemo she's received is hearing of her check-up today, she does not have any hearing loss - another YAY!)
  • Weekly Hickman line dressing change, including daily line flush
MORE Appointments this week:
- Liquid radioactive injection of MIBG for the MIBG Scan (requires 3 days of drops prior to protect Caroline's thyroid)

- MIBG Scan (will tell us if/where/how much of her cancer remains)
- Bone Marrow Biopsy (at last check, her bone marrow was comprised of approximately 25% cancer cells...we are hoping for zero!)
***We will not know the results of either the scan or the biopsy for at least 24-48 hours***

- Final appointment with the transplant team prior to admission on Monday

Please keep those prayers coming!  What we're about to face sounds like hell-on-earth, and so far, your thoughts, prayers, love, and support have gotten us through. 

Thank you, thank you!
The Lantz Family

Early morning hospital visits require donuts!

Radioactive injection for kidney function test.

Dressing change (done weekly) and central line flush (done daily).

We were able to meet soldiers at lunch and thank them for their service!



Nurse Kate will be away during our extended stay - we will miss her - glad to get in some hugs!

Hearing Test!  

Tuesday, May 1, 2018

We're Home!

We're home!  Caroline and Margaret got home early enough to take naps and cheer on Andrew at his baseball game for a little bit.  We're so happy to all be together again for an extra few, unexpected days at home!

Caroline leaving the hospital: "Seacrest Out, Baby!"

Cheering on the Cubs, while loving on her buddy, Milo!

Andrew is so happy to have everyone together...and let's go Preds!

All the love,
The Lantz Family