Vivi Cruising for a Cure

07/14/2024

On Thursday, July 11th, 2024, Vivi’s mom finally made the announcement we’ve been patiently waiting to shout for the rooftop!!!

💜“1,259 days.
1,259 days since being told “your daughter has cancer”.

Vivi had her port placed a week later and we were plunged head first into the world of chemo treatments, experimental treatments, surgeries, and all the terrible things that go along with cancer.

Today, Vivi is reaching a milestone that has been a long, long time in the making.

Today, VIVI HAD HER PORT REMOVED!!

The port that she’s called “pork” since the day she got it- IS GONE!!

This August she gets to start JUNIOR HIGH cancer free and port free!!!!

Her journey is never over.
She’s going to continue to get regular scans and we’ll probably always look over our shoulder wondering if a stomach ache is the return of our hell.
I pray that she gets to live the happiest, most normal life possible. And for now, we just rejoice at how far she’s come.

This chapter is closed. And we couldn’t be happier.

Words can’t begin to express how thankful, grateful and touched I am at how many of you have followed her journey. This Village has truly been amazing and we could never have gotten this far without the prayers and support of every single one of you. Thank you from the bottom of our hearts and I hope that you still continue to say a little prayer for her and all the families dealing with pediatric cancers.”💜

We are beyond thankful for all the love and support from everyone!!! We look forward to more fundraisers in the future to continue helping other families!

11/01/2023

It’s been several weeks since Vivi had her latest scans from the radiation trial she participated with in Dallas. They were not the scans we were all hoping to see, they actually showed four new spots that were not on the scans prior to the radiation treatment.

With this news, her doctors were quick to get a plan together. As much as she does not like being in the hospital her latest treatment plan will consist of some hospital stays over the upcoming months. Hopefully we will have some good news to share at the halfway mark. Here’s an update from Vivi’s mom from her admission today.

“Today we check in to Dell Children’s to start Vivi’s new treatment plan- 2 different types of immunotherapy.
She will start today with infusions of both nivolumab & unituxin, and continue the unituxin overnight in the hospital for the next 3 days, and then home for 4 weeks and start the cycle again. She will have to come back in 2 weeks again for an outpatient visit for the nivolumab infusion. And she will do that every other week for a few weeks.”

We would love all of the prayers we can get! It’s been a rough couple of years for our sweet girl, but she has powered through and continues to surprise us throughout this whole journey.
To say our Vivi is STRONG is an absolute understatement!

08/31/2023

Here’s a little update from Vivi’s mom.

Due to hospital policy only one parent is allowed to stay in the adjoining room once the radiation is administered, so dad got kicked out this morning. He was sure to get lots of hugs before he left and made sure her iPad had FaceTime. Lol 😂

Today is the day that Vivi will receive her MIBG injection.
Today starts day 1 of her (minimum) 5 day isolation.
I will get to watch my baby through thick glass and lead lined walls, entering only for the bare minimum. I won’t be able to snuggle with her or hug her for almost a week. It’s going to be a tough time for both of us. It hasn’t even started yet and my momma heart is hurting knowing I won’t be able to physically comfort my baby girl as she continues to fight this unfair battle.

Please say a prayer for my sweet baby today as she starts this leg of her journey. This treatment begins just one day before the start of Childhood Cancer Awareness month and we’ll be going gold this month for Vivi and all the tiny warriors she’s sharing this floor with. Keep them all in your prayers until they make it through their battles.

💜💛

08/10/2023

We’ve got a long overdue update for everybody. Unfortunately, the last few months have not been full of the results we were all hoping for. The week before Father’s Day, Vivi had some scans to get an update after being off of her meds for a little while. As her last few had been clear we were hoping to make it through one more set of scans before putting out some good news for y’all. But these last scans showed some new growth, not in the area of her original tumor but in another location. The decision was made to give Vivi the summer to get some time to be a kid for a few weeks before treatments began again. Below is an update from Vivi’s mom from 8/8/2023.

“Tomorrow we make the long trip to Dallas to do the pre-treatment testing for an MIBG Clinical trial at Children’s Medical Center. Children’s is one of only about 20 centers in the US that offer this treatment.
At the end of the month, we’ll be going back to admit for the treatment. It’s going to consist of an injection of radiation therapy which will make her radioactive for a few days. She will have to stay in bed, in a special isolation room where I will only get to interact with her through a window. I’ll only be able to go in for a few minutes, every few hours, in PPE. It will take roughly 5 days for the radiation to go back down to a safe level and then we will have exit scans and get to leave. Vivi will also simultaneously be on a 2 week course of oral chemotherapy and go back to Dallas again 6 weeks later to have follow up scans.
Basically, this is really going to suck.
She also won’t be able to take any of her toys or other stuff because anything she comes into contact with will be radioactive and have to stay in quarantine for at least six months! She is definitely not one to do well without contact with others and this momma isn’t sure how well I’ll take it either!
Please keep her in your prayers as we navigate this process!”

The upcoming trip at the end of August will definitely take a toll on Vivi, along with Mom and Dad. Keep them in your thoughts and prayers over the coming weeks that God bring then some form of peace during their trips.

11/09/2022

Hello everyone,

A shorty update this morning, without much new information. Due to some things that came up from a recent X-Ray of Vivi’s shoulder, her oncologist moved up her routine scans from the first week of December to this week. She will be doing an MIBG, MRI, and bone marrow test. Let’s all say some extra prayers the next few days in the hope this can be explained some other way.
We thank everyone for their continued prayers and inquiries as to how Viviann is doing. We will bring you more information when we can.

09/07/2022

*UPDATE FROM VIVIANN’S MOM ON 8/23*

Today was our little fighter’s first day of FOURTH GRADE!

I don’t even know where the time has gone. It seems like it’s moving at warp speed and somehow some things go by incredibly slow. One of the things that it seems has drug on forever is the back and forth about what was on Vivi’s scans a few months ago. It has been a roller coaster for everyone.
First, something was on the scans but labs are clear, then we had to wait 4 weeks to rescan to see if it grew.
Then those scans came back and it looks like it shrunk, but wait, now her labs are coming back positive.
Then, we did different scans and labs again to make sure it wasn’t a fluke.
And then, both of those came back positive.

Cancer rears it’s ugly head again.

It’s been a difficult thing for this momma to process. She’s just starting to get her life back. She’s back in school. Her hair has been growing back. She’s gained healthy weight back. She is flourishing. And now, this. Even at my happiest moments, I’ve been on the brink of tears, still trying to process what this means for my baby girl.

But not Vivi. It hasn’t phased her. The last few years of our lives, all of the trials, most of it hasn’t phased her. Or if it did, it didn’t keep her down long. Through everything that has been thrown at this child, she has held strong. She is the most amazing person I have ever met, without a doubt.

After consulting with all of the doctors, Vivi will begin an oral chemotherapy medication that she will have to take daily for a year. Thankfully, this medication shouldn’t make her hair fall out or make her sick. We are praying that this medicine will make it go away and will be easy on her and would appreciate it if you all would keep her in your prayers as she continues to fight this.

To quote Lloyd from Yellowstone, “You can’t teach that-toughness. You’re either born a willow or you’re born an oak. That’s all there is to it.”
And this little girl is tough, of that,I have no doubt. Please keep her in your prayers and she’ll keep fighting. 💜

*So far she has been handling the new meds and her school schedule pretty well.*

07/23/2022

Hello All,

Little bit of an update for everybody.
The last few months Vivi has gotten to transition back to a "normal" kid. With less doctor appointments and medication than what had become her "normal" over the last year.

She's done several full body scans, MRI's, and blood tests, which we were all expecting for the next few years. There has been one area light up on her scans that the doctors are currently attributing to scar tissue, as it is exactly where her tumor was surgically removed. But they are still keeping a very close eye on how it is measuring on all of her scans.

Her blood tests on the other hand, aren't quite as comforting for this Dad and Bonus-Mom. One came back negative for the cancer markers she previously had, and the next came back positive for those markers. I think we would all like for it to just be a definite answer, unfortunately medicine is not always so cut and dry. The doctors will continue to monitor her closely, as planned, to keep our sweet girl healthy.

Mom and Dad were able to talk with the specialist surgeon from MSK in New York, who has been staying up to date on her case. It's great that he's still staying so involved in her treatment even though he is so far away.

All in all, Vivi is doing GREAT! She acts like she never missed a beat. Still growing like a tall w**d and with a personality the size of Texas itself.

Let's all say a few extra prayers for Vivi over the next few weeks, she will be having more scans and blood work at the end of July. This will give us more answers on what is going on with our big girl (who turned 9 last month) over the last couple of months.

Thank you everybody for all of the love and support you continue to give through all of this!

02/07/2022

It’s been some time since our last update… my bad! I thought I had posted something but was recently reminded that it in fact never made it to the page.

Yesterday ,2/5/2022, was the 1 year mark from Vivi’s first day of chemo after being diagnosed with neuroblastoma. GIRL, HAS IT BEEN A YEAR!!!!

Since our last big update with lots of information, and waiting for updated scan results. Vivi did continue with her 3rd and 4th chemo treatments, and her 5th was canceled. Because her scans came back CLEAR! ❗️**this does not mean she is quite done, it just means she gets a little bit of a break between treatments. And Mom and Dad get to really get down to business with all the bills from the last year.**❗️

Currently she is going through her 2nd antibody treatment of 4 which do require a hospital stay. Unfortunately, these are one of the treatments that make her feel so crummy and sore. Then she will do another 5 medication treatments that will be done from home. Yay!
Also, she has finally put on enough weight/gained an appetite back that the doctors were comfortable taking the NG tube out. I can’t imagine her excitement!

All of this will be follow by lots of regular scans and lots of prayers that they stay clear! She’s such a strong girl but we’re all hoping she won’t have to be this strong for much longer. Next will be a transition of going back to school and seeing friends daily.

12/02/2021

Please read to the end.
We haven't done much of an update since Vivi and her parents landed back in Texas from NYC. From our previous posts, you know that the surgery when better than expected. Her recovery in NYC was great and they let her come home since she was doing so well. When she got home, things didn't go as well but she has taken everything in stride.
Vivi did end up getting a staph infection and unfortunately had to carry around a bag of antibiotics with her full time for a few weeks. She finally kicked that nasty bug to the curb and did great after that.
Knowing that coming back from NYC meant her doctor was going to have to tell Mom and Dad what the next steps were, they were both ready. Since they started chemo only about a week after they landed. Vivi's oncologist planned on 5 more rounds of chemo and antibodies, this is the treatment that got her to the point of being operable. The other thing that they planned on was meeting with the radiologist to discuss radiation treatment.
The doctors decided that during her second chemo treatment they would do it outpatient, so that she could do radiation at the same time. Let me tell you that 12 days in a row of going back and forth to Austin whooped everybody's butts. So for that second treatment she did her 5 days of chemo which started on the same day she started the 12 days of radiation. OUR GIRL IS A TROOPER!
The radiologist was great and basically told Mom, Dad and Bonus-Mom that the radiation he was planning on would be targeted towards the microscopic cells left behind from the tumor. They would be doing the lowest treatment they could do and he felt comfortable that would do the trick. With technology nowadays, the treatment would be like laying in an MRI machine for 10-12 minutes with only possible nausea that they would treat with some meds before she arrived everyday. She rocked those 12 days with flying colors!
Vivi has since then completed her 3rd of 5 chemo rounds that were planned. She has had some hard times getting here. The big one being the NG tube (feeding tube), which again she managed to remove herself in her sleep (she did this is New York as well). Which I don't believe many adults could manage to do!
Today and tomorrow (12/2 & 12/3) Vivi will be doing some updated scans to see where the treatments after surgery have put her in her journey.
With that being said, we would ask that everybody who has been following her journey or not say extra prayer for her and the family! We are all hoping for some good news in the next week on where she will go from here. Our prayer warriors have done some miraculous work in the past months and we know they will continue to make such a difference in these defining days.
Thank you.

11/09/2021

A few updates:

The past week has been a little rough on this little girl. Last week, she got an NG tube placed and she was NOT excited about this! Since she got it last Monday, she has gained FOUR pounds back! That might not be much to some of those who gain weight just by smelling food (🙋🏼‍♀️) but for her this is awesome!

Last week, we also got the ok to stop IV antibiotics and Vivi’s port was de-accessed for the first time since SEPTEMBER 15TH! This has taken a huge load off!

And today, Vivi finished her LAST radiation treatment! She handled all 12 treatments like an absolute CHAMP and I am so proud of her!
Next week, she will start another round of chemo. Please say a prayer that this one goes well!

09/24/2021

See ya NYC! They have landed in TEXAS!!!!!!

Just over one week after surgery and Vivi is as released to come home. She still has her bacteria infection it will get to fight that off at home luckily.

She will get about a week off then will start her next round of chemo.

She’s just happy to be back on Texas soil and see her Elvis and Nana!

09/22/2021

We wanted to give y'all a bit of an update today.
Viviann is still rocking her recovery!!!

Since our last update, of her being moved to a normal room and getting started on soft foods, she had started on solid foods. Although our already picky eater not feeling great from a slight bacterial infection, has had a hard time finding food that she's even slightly interested in.

Vivi has gotten all of her IV lines, epidural, and drainage lines removed at this point, which she is beyond happy about!!! They still have her on some pain pills and antibiotics right now for the bacterial infection.

We do not have a release date yet for them to come home, but it has been narrowed down to just a few days from now. We are all very excited!!! Once they get home, Vivi will be doing some more treatments in Austin but we do not have much information on that currently.

We cannot thank everybody enough for all of the thoughts and prayers that have helped get us this far! Please keep them up as she is not quite done yet. But the light at the end of the tunnel sure is looking BRIGHTER!

Please keep looking for some fundraisers to come as we have some fun things in the works!