Wednesday, January 31, 2018

Stem Cell Collection - SUCCESS

Caroline's surgery for her vascular catheter on Tuesday was successful (once again, she walked back to surgery!).  She spent most of Tuesday afternoon recovering from the procedure and waiting for the apheresis machine to become was being used by another little girl (baby) with the EXACT same birthday (different year) as Caroline, who was diagnosed with Neuroblastoma, on the EXACT same day that Caroline was diagnosed; we're on the exact same treatment protocol and timeline.  We are now praying daily for her, and her family, to receive excellent results and perfect healing!

There were some complications in getting the machine for Caroline on Tuesday, so we spent the night in the hospital.  The hardest part of spending the night was for Caroline - she had to keep her leg stick-straight, and lay flat from the time the catheter was inserted, until it was removed...hard for a kid.  We were admitted to our usual floor (6A), where Nurse Katie welcomed us back with some sweet notes!  We appreciate all of the folks at Vandy - they truly make a difference in helping us get through this!  Caroline was able to give back to them a little, too...pic below is her looking to hand out "nurse pendant watches" to her caretakers.

To pass the time on Tuesday, Caroline had a visit with Music Therapy.  She had a great time, and they were able to distract her yesterday afternoon while she waited for the machine...cheered her up when she wasn't able to have the procedure on Tuesday, and they were there for her on Wednesday morning when she was (finally!) getting connected.  I had a hard time keeping it together when they were singing "Get Back Up Again," one of Caroline's favorite songs from the movie Trolls; listen to the chorus - it's incredibly appropriate for her week, and her situation in general.

The apheresis machine was rolled in around 9am.  It took about an hour to "prime," and then they started the collection, which took about 3.5 hours, followed by the lab picking up the collection in an old-school cooler, so they could do counts and confirm they had what they needed.  About an hour later, we got the best news we could hear for this step: her counts were EXCEPTIONALLY high, and they were able to collect TRIPLE what they had hoped to collect.  This means that she will have everything she needs for the upcoming stem cell transplants for this protocol, but also for the future "just in case" scenarios.  After this was confirmed, they were able to remove the venous catheter at her bedside, which was a very hard thing to watch...I can't even imagine what it felt like for her.

We're resting at home now, and plan on being able to stay home until Monday or Tuesday, when her next round of chemo (#4) begins.

We've included more pictures than we usually post, since this is hard process to explain...

Thank you for the continued prayers and support.  We feel the love!

The Lantz Family

Monday, January 29, 2018

Stem Cell Collection is a GO!

Caroline's counts were up today, and she is scheduled to move forward with the stem cell collection process tomorrow.  Thank you for all of the prayers for high counts!  Her red blood cell counts were actually high enough that she didn't need the additional blood transfusion today during clinic...she just needed platelets.

Vanderbilt has amazing "Child Life Specialists" that were able to help prepare Caroline for the procedure tomorrow (pics below).  She was able to get an overview of the process, why it's so important for her treatment, and what everything will look like.  Caroline does really well knowing what to expect, so we're extra thankful that this team is able to help her better understand everything.

PVC (peripheral venous catheter) surgery is scheduled for 9am tomorrow, followed by recovery, hospital room admission, and then apheresis.  We are expecting to have to spend the night, but won't know until tomorrow.

Thanks for the continued prayers, gift cards, meals, donations, love and support!

The Lantz Family

Sunday, January 28, 2018

Fun Weekend / Stem Cell Collection Prep

Caroline has had a fun weekend!  Uncle Paul came to visit (from Baltimore, in pics below), and they spent a lot of quality time together, doing whatever she asked to do!  She had a lot of energy from her blood transfusion on Friday, as well as the effects of the Neupogen shots kicking in.

We will be returning to Clinic tomorrow to prepare her for the stem cell collection process.  You can read more about the overall, long-term process here, but tomorrow's prep includes another double-dose of the Neupogen shot, blood draw for labs, another blood transfusion, and a blood platelets transfusion (amounts all depend on counts).  The hope, and prayer requests, are for her counts to be high enough that she will only need one day of preparation before the procedure.  If her counts are not high enough, she will repeat what she does in Clinic tomorrow, on Tuesday as well.  After the Clinic preparation, she will be admitted into the hospital for surgery the following day (either Tuesday or Wednesday, depending), to insert a vascular catheter in her groin for the peripheral blood collection (aka - stem cell collection).  They use an apheresis machine to collect the stem cells, which may/may not include an overnight hospital stay, and then the vascular catheter is removed the same day they are finished with the stem cell collection.  The stem cells will be kept frozen at Vanderbilt Children's Hospital until the stem cell transplant phases, later in her treatment plan.

We will keep everyone posted on Caroline's progress along the way.

Hope everyone had a great weekend!

~The Lantz Family

Monday, January 22, 2018

Folks, the steroids have left the building...for this round...thank goodness!  I am not sad to see them go, and not looking forward to them rearing their ugly head again during the upcoming chemo rounds.  As Caroline tapered off the steroids, the cloud started lifting, and she has been acting more and more like herself.  Everything seems much easier to deal with when she's her talkative, spunky, smiling self, despite all she is going through!

Vanderbilt Home Health has been coming each day to give Caroline her Neupogen shot.  It still hurts, and she still cries when she gets it, but she has a little routine, which seems to make it a little easier on her when they arrive.  Her routine (that she does herself!) is to freeze her arm with an ice pack (alternating between the right arm and left arm each day), sit on her bed, hold "Elephante" and a hand, while she sits in someone's lap.  She also likes to use her own band-aids from home (Shopkins and My Little Pony)...whatever works, right!?  The plan it still to try and collect her stem cells on Monday, 1/29, or close to that date.

Caroline was able to get outside over the weekend and enjoy the gorgeous weather - she took a couple stroller rides to the park to swing on the swings.  It tired her out, but she was so happy.

Thank you for the continued prayers - we can feel our prayer warriors behind us and pushing us forward.

Ray Lewis sent a video to Caroline, and reminded us of Isaiah 54:17 - "No weapon formed against you shall prosper."  She responded to him with a thank you video, and he tweeted that and another picture of Caroline out tonight!  We are very grateful for his support-Thank you #52!

Twitter Post #1

Twitter Post #2

Much Love,
The Lantz Family


Saturday, January 20, 2018

Home Again

Round 3 of chemo is in the books, and we're happy to leave that round behind us!  This hospital stay was much tougher than the others - Caroline experienced extreme mood swings, a lot of nausea, and laid around/slept most of the time.  This is all normal for kids in her situation, but it was very different compared to the other 2 rounds, and was very sobering and sad to watch.  That has now carried over to home...she is still felling really crappy and just not anywhere close to her normal self.

A Vanderbilt Home Health Care nurse is coming each day, for the next 10 days, to give Caroline a shot of Neupogen, which will prep her for the stem cell collection.  We're not sure the exact date of her next admission, which will be to collect the stem cells, but we think it will be around Jan. 29th, barring any setbacks or blood work issues.  That day, she will have another surgery to implant a second access port in her hip area, which will be used to collect the stem cells from her blood.  Those cells will be frozen and used later in her treatment.  After the stem cells are collected, she will have the second access port removed.  

Her 4th chemo round will be after the stem cell collection, in early February.

As always, thank you for your generosity and support.  We truly appreciate every one of you, and all you have done for us!

The Lantz Family


Wednesday, January 17, 2018

Biopsy Results

It has been a rough couple of days for Caroline (and mom) in the hospital.  The chemo cocktail is much harder on Caroline's body than the drugs used in her first 2 rounds.  She is also on steroids this round and that causes some pretty severe mood swings (ROID RAGE!).  We are all hanging tough, but it is certainly a challenging week so far. 

We just met with one of Caroline's primary doctors, and the biopsy results from Monday are in.  Her bone marrow has 20-25% Neuroblastoma cancer cells (compared to the 80-100% at diagnosis), which means she is responding to treatment so far.  We are certainly pleased with the improvement and progress she is making in this first stage of the treatment plan - small victory, but we will take it!

We are meeting with the transplant team tomorrow to find out timing of her stem cell "collection" that will be used for transplant.   

Just to remind everyone, the overall 18-24 month protocal treatment plan: (steps 1-7)

1) 5 Rounds of in-patient chemo, with 2 weeks in between rounds (bone marrow biopsies and stem cell collection done at some point in here)

2) MIBG scan to review progress

3) Surgery to remove main tumor (if possible)

4) Two rounds of in-patient Stem Cell Transplant and HIGH DOSE chemo (each round is a one-month stay in isolation at the hospital)

5) Radiation (out patient)

6) Immunotherapy (in and out patient)

7) Scans to check progress

***8) Optional Clinical Trial of a daily medication for 2 years to help prevent relapse (we plan on participating)
As always, thank you all for keeping us in your thoughts and prayers.

Team Lantz

Saturday, January 13, 2018

Snow Days

It's freezing cold here in Franklin, TN!  A light dusting of snow on Friday, schools were closed, all the kids were out sledding in (basically) grass, and buzzing around the neighborhood...good times!  Caroline mostly watched from afar, but she did get all bundled up for one snowball and one ride down "the bowl" with her brother.

On Friday night, Andrew taught Caroline the "make it snow" trick, in hopes of getting more snow for Saturday...she tried it, and it worked!  The trick: you flush ice cubes down the toilet, wear your pjs inside out, and put a white crayon on the window she is with her inside out pjs and white crayons (right after she flushed the ice cubes down the toilet!) fun!

We're keeping warm and taking advantage of the last 36 hours at home, before we're back in the hospital for her bone marrow biopsy and round 3 of chemo.

Hope everyone is have a great weekend - thank for you for the continued prayers.

The Lantz Family

Wednesday, January 10, 2018

Great Appointment

Caroline had a routine outpatient appointment today at Vanderbilt Children's Hospital, and it was great!  She gained a little weight, all of her blood counts looked good, and she didn't need any transfusions.  She also had to get an EKG and an Echocardiogram in preparation for her stem cell biopsy and harvest that are scheduled for the coming weeks.  She didn't complain one single time about anything she had to do (per usual!)...she really is the best patient we could hope for.

She will be admitted into the hospital on Monday for her bone marrow biopsy and the start of her 3rd round of chemo.  That treatment and hospital stay is expected to last 5 days.

Some days are harder than others for everyone in our house, as the shock wears off, and the reality sets in...but we keep chugging forward.  Her pure joy and smile, along with the support of our family and friends, is really pushing us through this.  Thank you all for your continued support.

Sunday, January 7, 2018

Just Saying Hello

Nothing much to report, so we just wanted to post a quick hello!  Caroline is holding steady and staying isolated inside, which seems to be working for now...

We hope everyone is having a great weekend!

Team Lantz

Thursday, January 4, 2018

No Place Like Home!

I tried to write this post without using exclamations at the end of each sentence, but couldn't, so...

After 4 unexpected days in the hospital, Caroline was finally able to come home yesterday; earlier than we thought, so no complaints! 

A combo of the Neulasta shot, two blood transfusions, and a blood platelet transfusion all helped to bump her numbers up for discharge...modern medicine, blood donors and prayer warriors all rock!

We will be resting at home, comfortably isolated from this terrible cold and flu season.  Stay warm and healthy out there!

Team Lantz

Tuesday, January 2, 2018

Don't Plan on Planning!

Well, the fever that we were monitoring turned into an ER visit, which turned into a hospital admission, and stay...Caroline is still in the hospital, and will probably stay here a few more days.

Cancer is definitely teaching us a lot of lessons quickly - the most recent is planning. As in, you can't plan! Instead of our annual tradition of a quiet night at home celebrating NYE with some delicious seafood, we were in the ER...and instead of resting up at home before Andrew comes home from Florida, we're hanging out in the hospital. Luckily, this is Margaret's new full-time job, so it's not a big deal...just hard for a Type-A planner to get used to...

Caroline's counts are slowly (slowly!) making their way back up towards going home. She's gotten antibiotics and a blood transfusion, which are definitely helping. Her Neulasta shot is kicking in...great news for her counts, but has caused her some extreme bone pain.

Despite it all, she is mostly herself, which keeps us all motivated to smile.

As of today, her next scheduled chemo round will begin on 1/15/18. That same day, before chemo begins, she will be sedated to have another bone marrow biopsy. The biopsy will check the progress of the chemo on the cancer within her marrow; the hope is that the cancerous cells have shrunk to less than 5% (from 90% at start). Assuming this significant improvement has happened, they will be able to harvest those bone marrow cells in between rounds 3 and 4 of chemo. Those cells, from her own body, will be frozen for use at a later time (months away) during the bone marrow transplant phase of treatment (aka: autologous transplant).

FYI: we are moving away from the GoFundMe site for donations, because some folks have told us they accidently donated to the GoFundMe site itself, instead of Caroline's page on that site. We have added a "PayPal Pool" account to the "Ways to Help" section on the website: follow the link and click "chip in." We appreciate all of your generosity and love to date!

Much Love ~
Lantz Family