Kami’s Kourage

10/04/2026

To help Kami get the vital nutrients she needs, her dad put together a special smoothie menu made entirely from whole, real ingredients—no quick mixes or synthetic supplements allowed!

Given that Kami previously relied on a feeding tube and TPN for nutrition for quite some time, every single sip she can take and enjoy is a massive win that we are so grateful for.

Cancer treatment strips away so much from the body, so we’re doing everything in our power to nourish, support, and rebuild her strength from every possible angle.

🫐🥦🫚🍯🍋 🍓🥑🥕

Join the fight by making a smoothie and sharing your photo with ! 💕 🎗️🩷

10/03/2026

While our last update was certainly less than ideal, we want to continue keeping everyone in the loop. Kami started this journey wanting to be as transparent as possible, and we are sticking to that. 🎗️🩷

Her oncology team attempted to get her into the CAR-T trial at St. Jude and the TINKS trial at MD Anderson in Houston. However, both trials require two prior failed chemo attempts for eligibility. It’s a frustrating hurdle, but we are pressing forward.

Her dad and I have spent countless hours researching and discussing next steps alongside her oncologist, who presented two chemo options:

1. Topotecan: Highly brutal, requiring frequent inpatient stays, blood transfusions, and severe neutropenia. We decided against putting her through this.

2. VCT (Vinorelbine + Cyclophosphamide + Temsirolimus): This is our chosen path. Research shows that Kami’s specific cancer—PAX3-FOXO1 alveolar rhabdomyosarcoma—responds very well to this combination.

To put things in perspective, only about 40 people per year are diagnosed with this exact genetic subtype. Out of billions, our girl is truly one of a kind! While her previous treatment (the RMS2021 trial) helped clear her chest, identifying this specific gene mutation now allows us to target what works best for her exact diagnosis instead of simply Rhabdomyosarcoma itself.

Unlike her previous treatment, which hit the cancer in heavy periodic intervals (causing her ups and downs), VCT is a low-dose, daily approach designed to keep constant, steady pressure on the tumors.

Kami will likely start VCT on Monday. We are also requesting a clear timeline from her care team to evaluate its effectiveness quickly so we know if/when trial eligibility becomes an option.

Please pray that VCT does its job and works effectively. Kami is an absolute warrior—she’s handled this with so much grace that she’s even supporting other young girls navigating the same battle!

Thank you all for your continuous love, prayers, and support! 💛🎗️🩷

09/29/2026

We received the results of Kami’s recent PET scan today. Unfortunately, it did not show what we had been praying for. The scan revealed new areas of progression, which means the trial she was on is no longer working. She didn’t receive chemo today while her medical team goes back to the drawing board to build a new battle plan against this aggressive disease. 🎗️

While this news is devastating and something no family should ever have to hear, we are not stopping, and we will not stop fighting! 💕 We are still thankful for how much it cleared up her chest.

Dr. Pappo has laid out several potential paths forward, and we are actively exploring every single one, including many others:

🌸 St. Jude: We are currently waiting to hear if Kami qualifies for a CAR-T immunotherapy trial right here at St. Jude, which remains our primary focus. There’s mention of other chemotherapy drugs that may be effective and have been used in cases of an aRMS relapse.

🌸 MD Anderson (Houston, TX): Her oncologist at St. Jude recommended MD Anderson, and they are currently exploring potential options there for Kami as well.

🌸 Sarcoma Oncology Center (Santa Monica, CA): We have reached out regarding access to a trial drug called Delta Rex-G.

We have a heavy week of decisions ahead of us, but our goal remains unchanged: we are pushing for a cure, no matter where that journey takes us.

🎗️ How you can support us right now:

1. Pray specifically for the progression of this disease to stop immediately!

2. Pray for clarity, speed, and wisdom as God leads our family and doctors down the exact path that will bring Kami a cure.

Thank you all so much for lifting Kami up, surrounding us with love, and fighting alongside us. We feel your support deeply.

Left scan was in July. Right scan was today.

09/26/2026

Update on Kami 🙏 🎗️💕

Kami had a CT scan yesterday to check if recent fluid build-up was pneumonia. We’re relieved to share that doctors do not suspect pneumonia!

The scan covered her shoulders to her pelvis, and while we are incredibly thankful her chest remains clear of cancer, it did reveal a new 6.6cm (2.6-inch) mass pressing against her left o***y. Given that she is in her 11th cycle of chemo, this was unexpected, and we certainly have a lot of questions!

She is scheduled for a PET scan on Monday (and likely an MRI) to help the medical team figure out the best path forward.

𝑨 𝒒𝒖𝒊𝒄𝒌 𝒏𝒐𝒕𝒆 𝒐𝒏 𝒉𝒆𝒓 𝒇𝒆𝒓𝒕𝒊𝒍𝒊𝒕𝒚 𝒋𝒐𝒖𝒓𝒏𝒆𝒚: Kami’s dad and I have been advocating for a fertility consult to explore egg harvesting. We asked before she started chemo, but were told treatment had to begin immediately. We had a consult set for Monday, but it was canceled due to her inpatient stay—making this new finding near her o***y even more ironic. While protecting her future fertility and hope for grandbabies is important to us, Kami’s health and treatment will always be the absolute priority.

We suspect surgery may be in the plans and want to limit radiation near her reproductive organs if possible, but we will know more once the doctors review the upcoming scans.

🎗️ 💕 ℍ𝕠𝕨 𝕪𝕠𝕦 𝕔𝕒𝕟 𝕡𝕣𝕒𝕪 𝕗𝕠𝕣 𝕂𝕒𝕞𝕚 𝕣𝕚𝕘𝕙𝕥 𝕟𝕠𝕨:

🙏🏻Pray that chemotherapy completely eradicates all cancer from her body.

🙏🏻Pray for great PET scan results with no additional surprises.

🙏🏻 Pray for wisdom for her medical team to quickly address this pelvic mass so Kami can stay on track for her maintenance phase in December.

Thank you all so much for your continued love, prayers, and support! ❤️ 🎗️

09/25/2026

We’ve received a number of messages asking if Kami still has an active wishlist. She updated her list this evening, which we’re sharing below for everyone we haven't had the chance to respond to yet.

Shipping address:

361 N Third St Room 401 , Memphis, TN

Please remember to add a gift note with your purchase so she knows who sent it. Thank you for your continued kindness and support! ❤️



https://giftful.com/wishlists/xEG7hnTQLAEgQd7o9dWM?fbclid=IwdGRjcAUitDZleHRuA2FlbQIxMQBwZG9mAWZkaWQWUPGIZUziK5AtaOLylUvfyXvEG8MPx3NydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR7kMS7xEt76ihIP0cj5hUVJM3vBdnxhdZyz93RaTraPResfAwFBUJNzLFUeKw_aem_E-Qizv9hC9Pl_LRULugTUA

Check out Kami's Wishlist list

09/24/2026

Update on Kami:

Kami spiked a 103°F fever last night, which prompted the team to perform a chest X-ray due to shortness of breath. Unfortunately, the X-ray showed fluid in her left lung again, even though she had just completed a round of steroids. Because of past chemo and radiation damage, Kami is extremely fluid-sensitive. Although her medical team was running her IV fluids very slowly to prevent this, the fluid still built up.

She needed the rest, so she slept for most of the day today. While this week’s chemo was initially postponed on Monday, she received it today. She also received a blood transfusion, bringing her total to one blood transfusion and eight platelet transfusions over recent days.

Please continue to lift Kami up in prayer for strength:

💪🏼 Strength for her bone marrow to recover and bounce back, especially after today's chemo.

💪🏼 Strength for her body to fight off this fever and fluid build-up.

💪🏼 Strength to keep pressing forward! With her maintenance phase scheduled to begin on December 7th, we just need to keep pushing through this home stretch!

Thank you all for your continued prayers and support! 💕

09/23/2026

Update:

Kami has received her 8th bag of platelets in the last 24 hours. Her counts were at 87 as of 6:29 PM CST. Normal range is 170-430.

Because she’s in her 11th chemo cycle, her bone marrow is taking longer to recover. This has caused some severe nosebleeds that required an ENT specialist from the University of Tennessee to come in and pack. Until her platelet levels normalize, the risk of another bleed remains high.

There is a small sign of progress—her ANC rose to 10 this morning (up from 0 yesterday), though a normal range is 1,800–7,200. We will take any increase! 🙏🏻

Please keep praying for:

💕 Her ANC to continue rising.

💕 Her body to effectively process the transfused platelets.

💕 Her bone marrow to wake up and begin producing on its own!

Thank you all for standing with us. ❤️

09/22/2026

Kami Update:

We’re asking for extra prayers right now. Kami had another heavy nosebleed at 3:20 PM CST, and ENT had to pack it, which is causing her significant pain. It’s still slightly bleeding but thankfully, has finally slowed down after a traumatizing few hours! ❤️

Her ANC was at zero on labs early this morning. She’s already received three bags of platelets and we’re honestly suspecting a likely blood transfusion at this point due to the amount of blood loss from her nose bleeding. We’re currently waiting to see if she’ll need to be sedated to cauterize the bleed.

We appreciate Kami’s Support Squad so much!