As we often mention, the community support we've received during the last 8 months has been a perpetual source of love and gratitude. Today, we would like to give a very special thank you to The Academy of McKay's Mill. The Class of 2018 is graduating tonight, and we really wish Caroline could be there in her little cap and gown, just like her friends, and just like her brother, when he graduated from The Academy in 2013. The Academy is where Caroline spent every working weekday since she was 16 weeks old...it was her home away from home, and she loved her teachers and friends just like they were her family. Other than telling Caroline she had cancer, telling her she couldn't go back to school and see her friends/teachers was the hardest conversation we've had with her. Although Caroline never went back to school after she was diagnosed, we've never felt like she actually "left." Our Academy family has been steadfast in their inclusion and support for Caroline - always checking on her, sending cards, videos and even homework! We were also included in the formal graduation photos, and then were surprised with a special insert for Caroline within the graduation program, which literally brought us to tears. Despite the fact that Caroline won't be able to formally graduate with her friends, having a picture of her in a little cap and gown, from a place that helped raise her, is truly priceless. Thank you, Academy of McKay's Mill - we love you all!
Hospital Update:
Right now, Caroline is having her most difficult stretch since starting the treatment protocol back in November. She has extreme mucositis through her entire GI tract (worse than during her last transplant), which is causing her to struggle with getting enough oxygen. She is now on a nasal cannula, which is giving her the oxygen assistance she needs. The other major issue she's having is blood and intestinal tissue in her stool, also as a result of her GI tract being stripped raw from the high-dose chemo. Needless to say, it is VERY painful for her; she is on continuous Dilaudid/pain medication (already more than the last transplant), as well as a patient-controlled button, which she needs to use frequently. The mucositis has also moved into her throat, which causes her so much discomfort that she doesn't want to talk; she is mostly using hand motions and a bell to get our attention. We expect her to struggle like this -- or worse -- for the next 5-7 days. She received both red blood and platelet transfusions today to help get her numbers up before we head into [what we expect to be] a very challenging weekend. Please continue to pray for her comfort and a speedy recovery.
Team Lantz
#carolinestrong
#ftgf
November 2017: diagnosed with Stage IV, High-Risk Neuroblastoma; Nov 2017-April 2019: completed standard treatment protocol / no evidence of disease; April 2019-April 2021: enrolled in/completed DFMO clinical trial; April 2022: RELAPSE; April 2022-June 2023: completed relapse treatment protocol / no evidence of disease (again); June 2023-June 2024: enrolled in “compassionate use” high-dose DFMO clinical trial; June 2024: RELAPSE #2
Friday, July 27, 2018
Bottoming Out / Pre-School Graduation Day
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Monday, July 23, 2018
Rough Weekend / Stem Cell Transplant
We've had a very difficult few days. The side effects of the high-dose chemo kicked in much quicker this round, compared to the last. Caroline has been dealing with:
- high fever
- diarrhea with blood in stool (result of colitis and mucositis, as determined by an unplanned X-Ray and CT Scan late Sunday night to confirm)
- colitis
- musocitis
- nausea/vomiting
- loss of appetite (she hasn't eaten since Thursday, and is getting all nutrition through an IV)
- severe abdominal pain
- leg pain
Although the transplant/oncology team warned us that this transplant would be harder than the first, we were not really prepared for how badly it would get, and how quickly...and we haven't even seen the worst of it yet. Caroline is already on a Dilaudid PCA, which is administering continuous pain medication, as well as countless other medications, scheduled around the clock. Other than the actual diagnosis, these have been the hardest few days since November 2017, when she began her treatment protocol. As of today, she officially does not have any white blood cells or ANC/neutrofils (immune system), which is why we expect her condition to worsen over the next 7-14 days, before it should begin to recover from this awful stretch.
Around noon today, Caroline received her 2nd stem cell transplant. The stem cell transplant helps her body rescue itself from the high-dose chemo. Without this rescue, she would not be able to recover from the high-dose chemo. The process itself, as mentioned in the post about the 1st stem cell transplant back in May, is very anti-climactic...the frozen cells are brought to her room and thawed bedside, inserted into a syringe, and slowly pushed through her central line over about 15 minutes. The process is not painful, but it does smell like creamed corn in the room for a couple days, which is weird.
As always, the hospital staff does an amazing job of explaining every process to Caroline, and is always looking for ways to make her comfortable and happy. Transplant day is a very big deal around here, so they really do it up! She got signs, toys, and music therapy during the whole process...it really made her smile, which always makes everything easier to watch. Words do not do justice to the love and kindness that is shown to Caroline and our family every time we're at Vanderbilt; this place, and more importantly...the people, are truly amazing!
Thank you for your continued prayers, specifically for her comfort during the next week, and our family's emotional state. This just plain old sucks.
Hanging in there,
The Lantz Family
#carolinestrong
#ftgf
Rough weekend.
Full-service bed ride to CT Scan.
CT Scan
Awesome door sign made by Child Life Services volunteers!
Caroline's own stem cells to the rescue!
Actual stem cell transplant.
Daddy and Caroline with one of her favorite gifts in the bag today...a blow-up Unicorn head...LOL!
Friday, July 20, 2018
Chemo Complete! (Hopefully FOREVER!)
Today was the last day of chemo for this round (and hopefully ever!)!!!
So far, Caroline has been in pretty good spirits...she is still eating and drinking a little bit, playing with slime, doing art, and even got out of bed to do some music therapy. Nausea, vomiting and diarrhea are currently her biggest side effects, so she is on a few medications to help with those. We expect the next few days to get progressively worse, as her body continues to react to the high-dose chemo. Although she is eating a little, the doctors have started Caroline on some nutritional supplements via an IV line and her NG tube. The next big step is the stem cell transplant, which is scheduled for Monday, followed by approximately 3 weeks of inpatient recovery (again, due to the high-dose chemo side effects).
Andrew is currently enjoying 2 weeks of fun on vacation in Baltimore with family. Yesterday, thanks to a very generous friend, he got to attend Day 1 of Ravens Training Camp 2018. He had a blast and got so many collectibles, which he said he wants to share with his little sister when he returns!
Mom and dad don't sleep very much these days...we're still struggling to deal with all of this mentally - the long and exhausting treatment protocol, what's still ahead, and being separated from each other constantly. That being said, we cannot express enough how much we appreciate the visits, outreach, love and support from our friends and family. We are very thankful we don't have to go through this alone...Caroline and her army of supporters are strong, so we must stay focused on that, even though it's easier said than done.
Team Lantz
#carolinestrong
#ftgf
So far, Caroline has been in pretty good spirits...she is still eating and drinking a little bit, playing with slime, doing art, and even got out of bed to do some music therapy. Nausea, vomiting and diarrhea are currently her biggest side effects, so she is on a few medications to help with those. We expect the next few days to get progressively worse, as her body continues to react to the high-dose chemo. Although she is eating a little, the doctors have started Caroline on some nutritional supplements via an IV line and her NG tube. The next big step is the stem cell transplant, which is scheduled for Monday, followed by approximately 3 weeks of inpatient recovery (again, due to the high-dose chemo side effects).
Andrew is currently enjoying 2 weeks of fun on vacation in Baltimore with family. Yesterday, thanks to a very generous friend, he got to attend Day 1 of Ravens Training Camp 2018. He had a blast and got so many collectibles, which he said he wants to share with his little sister when he returns!
Mom and dad don't sleep very much these days...we're still struggling to deal with all of this mentally - the long and exhausting treatment protocol, what's still ahead, and being separated from each other constantly. That being said, we cannot express enough how much we appreciate the visits, outreach, love and support from our friends and family. We are very thankful we don't have to go through this alone...Caroline and her army of supporters are strong, so we must stay focused on that, even though it's easier said than done.
Team Lantz
#carolinestrong
#ftgf
Goofy time with music therapy.
Training camp with Pop-Pop.
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Monday, July 16, 2018
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:
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
- 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.
- 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).
- 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!
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!!!
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Thursday, July 12, 2018
Next Steps / Family Meals
Caroline's "at home break" in between treatments is coming to an end. She will be admitted on Monday (7/16), for the second round of high-dose chemo, and a second stem cell transplant. We expect to be inpatient at the hospital for about 4 weeks straight, most of which will just be recovery from the 4 days of high-dose chemo. The expected side effects include: high fever, loss of appetite, mucositis, vomiting, diarrhea, possible rash, fatigue, etc. Caroline will begin this inpatient stay on isolation and contact precautions because she is still testing positive for the "rhino virus" (aka: common cold). It will (once again) be a very difficult stretch for Caroline, and our entire family. Please continue to keep us in your daily prayers.
Here is the remaining approximate treatment timeline:
Here is the remaining approximate treatment timeline:
- Inpatient High-Dose Chemo / Stem Cell Transplant (1 month)
- Rest-at-Home Break (2-3 weeks)
- Outpatient Radiation (3 weeks)
- Inpatient and Outpatient Immunotherapy (6 months)
Assuming there are no setbacks, the above treatment plan runs through April 2019.
We have decided to not post any at-home delivery meal train dates for the upcoming hospital stay, since most of our time will be spent at Vanderbilt. However, if you would like to donate a meal, please click here and you will be directed to Postmates gift card page. You can send the gift card to Margaret's email (margaretlantz@gmail.com). It is a very convenient option for us to get dinner delivered from a restaurant close to the hospital, and saves us from eating in the limited food court all the time...
Thank you all for the continued love and support!
Lantz Crew
#carolinestrong #ftgf
Learning how to sew with her godmother, Kathleen!
Sunday, July 8, 2018
Happy 5th Birthday, Caroline!
Happy 5th Birthday to our sweet Caroline!
She's feeling pretty well, and is having a great birthday weekend. To commemorate the special day, we had our family picture taken this morning (thanks, Anna, for the pics and insanely quick turnaround!)...here are some of our favorites:
Thank you for your continued prayers and support for our family...and here's to many more birthdays to come!
Team Lantz
#carolinestrong
#ftgf
She's feeling pretty well, and is having a great birthday weekend. To commemorate the special day, we had our family picture taken this morning (thanks, Anna, for the pics and insanely quick turnaround!)...here are some of our favorites:
Thank you for your continued prayers and support for our family...and here's to many more birthdays to come!
Team Lantz
#carolinestrong
#ftgf
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