HUGE Day

Monumental steps today!

Caroline was discharged today after finishing her 5th cycle (of 6) of Antibody Immunotherapy!  This was her last inpatient round of treatment...hopefully forever.  She also had surgery this morning to remove her Double-Lumen Hickman Central Line (heart bandage below in picture is where her line was connected).  She's had a central line since November 30, 2017, so this is really exciting - she will finally be able to shower and swim again soon!  This procedure was moved up a week, after they discovered a small hole in one of the lines over the weekend.  Because Caroline received her last dose of intravenous chemo treatment this round, and will hopefully no longer need a central line, they went ahead and removed it while we were still admitted today, instead of repairing it, or having her come back next week to get it removed.

Remaining treatment protocol timeline as follows:

• Weekly outpatient Vanderbilt clinic visits for blood work/labs and check-ups
• Cycle 6 (an final) of Immunotherapy in March (oral medication at home)
• End of treatment CT and MIBG scans in mid-April 
• DFMO clinical trial drug for 2 years (assuming No Evidence of Disease at end of treatment scan)

Huge shout out to the incredible staff at Vanderbilt Children's Hospital, who have been so amazing to Caroline and our family throughout this process of inpatient stays.  We appreciate all of you more than words can ever adequately express, and we are very grateful that we chose to stay local for her treatment plan.  Many thanks to Dr. Maggie (surgeon) for taking such awesome care of Caroline today, on what we hope will be her final operation/procedure!

We will continue to keep the blog updated as we have new information or treatment results.

Tired, but happy and hopeful!

The Lantz Family

#carolinestrong

#ftgf

                                                     

Loading up car to come home from Vandy (hopefully the last time)

Heart bandage over Hickman line scar

Walking back from surgery

Pop-Pop heading home

Visit from 6A BFF Molly 

Difficult Week

Caroline has struggled to recover this week from Round 1 of inpatient Immunotherapy, and has been back and forth to Vanderbilt for fever and check-ups 3 times since discharge on Saturday.  The fever, lack of appetite, and stomach pain symptoms are mostly likely side effects from the latest treatment, but we are awaiting test results that will show if she is also suffering from a stomach virus (which is apparently going around the hospital).  She certainly isn't her normal, energetic self right now, and has lost a few pounds over the last few weeks, but we are hoping she is starting to turn the corner.

We were told by our nurse case manager today that the treatment protocol for High-Risk Neuroblastoma is by far one of the hardest on both the patient and the family, and we can certainly attest to that!  We are approaching the one year mark of Caroline's diagnosis, and our whole family is just mentally and physically exhausted; honestly, we are very "over" this process.  But, we won't quit, we won't slow down, and we will continue to remind ourselves that this schedule and strain on our family is temporary.  If Caroline can endure the actual treatment, we can certainly keep forging ahead at full-steam...even on the days we feel like we have nothing left.

As of now, we are scheduled to go back into the hospital for Round 2 of inpatient Immunotherapy on Monday, 11/19.  We will be in the hospital for Thanksgiving week, and will likely be there for 12-14 nights, with a possible 1-2 day break in the middle (but based on Caroline's recovery from this first round, we aren't counting on the break).

The pictures we decided to share this week show part of her current daily/weekly routine, which includes: many oral doses of liquid medication, a shot in her arm, double-lumen Hickman line flushes, a sterile central line dressing and clave changes, and most challenging of all, 4 oral pills she has to swallow (which can take her 1-2 hours per day to get down!!!). Caroline has been a super-strong trooper over the last year, but it's apparent that even she, too, is getting tired of this grueling routine.  She misses her friends, and wants to be a normal kid doing "normal" kid things; she's starting to notice what she's "missing out on" more and more.

We would like to say THANK YOU to all of our friends and family that have stuck with us throughout.  We are aware that everyone has their own lives, and problems to deal with, so we appreciate that continued outreach and support!  Much love!!!

The Lantz Family
#carolinestrong
#ftgf

Progress Update

Caroline is feeling better today and has started to eat and drink a little bit!  The clogged line issue from the weekend has been resolved without any surgical procedures, and her oxygen levels and blood pressure are back to normal.  We hope that she can be discharged within the next few days.  When she is allowed to go home, she will leave with a daily IV antibiotic that we will administer at home, through her central line, that runs for 14 days to ensure the infection is completely gone.

We have confirmation that Cincinnati Children's Hospital has received her transfer records, and we expect to hear from them later this week to schedule her Proton therapy.

Thank you for you all the vigilant prayers, especially during this scary ICU/infection experience.  We are also beyond thankful for the generosity that we've received in Paypal donations for the upcoming travel expenses.

So much appreciation,
The Lantz Family
#carolinestrong
#ftgf

Trying some "real" food last night!

Art with Aunt Joanna is the best!  Grumpy Cat and "Grumpy Caroline!"

Back on Oncology Floor

Caroline was moved back to 6A from the ICU at 5pm today!  Her blood pressure is stable, she isn't requiring oxygen, and she is currently resting with IV fluids and pain control medication. She will start NG tube feeds tonight and hopefully start drinking water or juice again soon.  She will be tested daily via blood cultures to make sure the bacterial infection is exiting her system, which is the first step to being considered for discharge next week.

Although she's made great progress, another issue popped up right before we were being transferred out of the ICU: one side of her double lumen hickman line (central line) is clogged and not flushing at all.  We are awaiting the surgical team to assess and see if it can be fixed bedside (or magically clear up!).  We're told that these types of clogs typically are related to bacteria clinging to the inside of the line, or possibly a blood type clot/obstruction in the line.  We will keep this blog updated when we find out the actual cause and resolution.  Please pray that this can be resolved without having to replace the entire line, which would require sedation and surgery.

We are all completely zapped...mentally and physically...and need a little stretch without any more surgeries, setbacks or surprises.

Lantz Family
#carolinestrong
#ftgf

Day 1: High-Dose Chemo

Today at 7am, we were admitted for Caroline's first day of high-dose chemo.  We had a very stressful and adventurous start to the day...to summarize:

1. Last night, we got a call that Friday's echo-cardiogram showed that her central line may have moved internally, and would require an early morning X-ray to confirm; if it had moved, it would require surgery to repair.  Caroline wasn't able to eat/drink after midnight last night, just in case.  We were extremely worried about her having to endure another surgical procedure right before high-dose chemo, which is already rough enough.  Thankfully, the X-ray showed that all is normal, and we were able to start chemo on time.
2. Unrelated to the scare above, during the first full hour of chemo, we noticed that Caroline's central line was leaking blood onto her bed.  We immediately called the nurses. ..they paused her chemo, and moved both chemos to one line.  They found a cut in her left-side line, and luckily, the surgery team was able to fix it bedside...fascinating to watch (kind of like fix-a-flat tire patch, with super glue).
3. FUN NEWS: Caroline lost her first tooth today at exactly 2:30pm (aka: toof hurty...haha...dad joke)!!!  She was so proud and excited, and has been telling anyone and everyone that passes by!

Caroline will receive 3 different types of chemo for the next 3 days, and then 2 types of chemo on the 4th day (Thursday), followed by a stem cell transplant on Monday (7/23).  We expect to be here for the next 30 days or so, recovering from this sub-lethal dose of chemo.

Thank you very much to everyone that donated Postmates gift cards for hospital meals - they are a huge help!  We appreciate all of the generosity and prayers you've sent our way!

Much Love,
The Lantz Family
#carolinestrong #ftgf

Chemo cocktail...

 Waiting for the X-Ray

Hug the X-Ray Machine!

Slice in central line.

Bedside line repair.

Playing babies while getting chemo!

Lost her 1st Tooth!!!