DeliahBrave

DeliahBrave Deliah was diagnosed in August 2019 with ALK+ brain cancer. There currently is no cure.

Thank you for the outpouring of love, support and continued prayer! The last couple days have been incredibly overwhelmi...
10/01/2026

Thank you for the outpouring of love, support and continued prayer! The last couple days have been incredibly overwhelming.

There was unsettling findings on Deliah's whole body MRI. We're still waiting on clarification. Hopefully we hear more this week. 😰❤️‍🩹



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Deliah is currently in a 1.5 hour sedated MRI. They're doing both her whole body & brain scan at once. I hope and pray w...
06/01/2026

Deliah is currently in a 1.5 hour sedated MRI. They're doing both her whole body & brain scan at once. I hope and pray we finally get answers to her pain. What a blessing that would be.

Deliah's body truly needs a break from treatment so I really hope her tumor is stable. Or it could just be gone... that would be a miracle.

Tomorrow we see the oncologist and then she has a 3 hour opthalmology appointment. 🫠

Off to find this girl some food and a pink drink. 🥤 I'll update with results when I can.


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The Give Kids a Chance act passed unanimously through the House but yesterday, Senator Bernie Sanders blocked it. 😡 He w...
18/12/2025

The Give Kids a Chance act passed unanimously through the House but yesterday, Senator Bernie Sanders blocked it. 😡 He wanted to attach other legislation to it without bipartisan support.

Our kids aren't bargaining chips!!!

Pediatric cancer ISN'T POLITICAL.

Stop using dying kids as your pawns!

•This bill will boost childhood cancer drug development by allowing FDA-mandated pediatric studies of new drugs in combination with existing therapies, removing regulatory hurdles, and extending incentives (Priority Review Vouchers) for rare pediatric disease treatments, aiming to close research gaps and get life-saving treatments to kids faster.

Deliah had her second opinion with Duke rheumatology yesterday. Overall, it went well. A little overwhelming once we've ...
17/12/2025

Deliah had her second opinion with Duke rheumatology yesterday. Overall, it went well. A little overwhelming once we've had time to process everything. There's a couple diagnosis' the doctor wants to look into but we'll wait to say what those are until we get concrete answers. 🫠

🩸Labs drawn
🩻 Whole body MRI ordered 😳
👩‍⚕️Palliative care consult submitted

If all else fails....
We spoke about a few different specialized pain centers out of state. Buuuut, hopefully we can figure it out before it leads to that. 😰❤️‍🩹 I'm incredibly thankful for a doctor who listened and didn't dismiss us.

Then today, we saw our favorite neurologist at UNC for botox. Deliah gets five very full syringes in her scalp and neck. It's so very painful for her.

We're going to keep hoping and praying for answers. I won't stop til we get them.


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Well, I spoke too soon. Deliah's pain is back. 😞❤️‍🩹I've reviewed six years of Deliah's labs & gone down the research ra...
02/12/2025

Well, I spoke too soon. Deliah's pain is back. 😞❤️‍🩹

I've reviewed six years of Deliah's labs & gone down the research rabbit hole once again. 🕳 I requested a second opinion from a different rheumatologist. I now truly believe this is an autoimmune/inflammatory disorder that hasn't been fully worked up. More tests need to be ordered!

It's so exhausting doing their job.

PS: Deliah has been taking Lorlatinib for one year, today. 😳




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Deliah had an iron infusion a month ago and it actually helped her joint pain! Neurology and oncology had very different...
23/11/2025

Deliah had an iron infusion a month ago and it actually helped her joint pain! Neurology and oncology had very different opinions on moving forward with the infusion. I did some research and decided to proceed. I'm so glad we decided to try it. She doesn't cry in pain every day anymore! 🙌 We'll recheck her levels soon to see if she needs another infusion.

A couple weeks ago we met with her Duke Pulmonologist and came up with a "sick plan." Last winter was really reallllly rough. Hoping and praying she doesn't get as sick this winter. 😷

Deliah's swelling is still awful. She's on three diuretics - one of them is very hard on her body so she takes it on Saturday. She literally loses five pounds of fluid in one day... then gains it back during the week. Wash, rinse, repeat. 🔄

Mid December she goes back to UNC for Botox. She's definitely ready. It's always hard for her getting through the last few weeks due to pain. 💉 (if you're new here, Deliah has Cervical Dystonia due to brain surgery/tumor location)

In the meantime, she stays busy just like any other 13 year old girl. Deliah loves spending time with her friends, she's super into skin care and makeup. She really enjoys her school activities FCA, student news, and is a new member of NJHS. She also picked up a new hobby - sewing!

Deliah's next brain scan and oncology visit is the first week of January but we're going to try and mentally set that aside and enjoy the holidays.

I hope everyone has a Happy Thanksgiving!



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First of all, thank you for your prayers! It's been an incredibly mentally and emotionally taxing week. Thursday of last...
18/10/2025

First of all, thank you for your prayers!
It's been an incredibly mentally and emotionally taxing week.

Thursday of last week we found out Deliah's oncologist is leaving Duke. 😔
We'll be going on our fourth oncologist in six years.

Friday we had an appointment with a different oncologist and her nephrologist. We were supposed to discuss side effect management... that didn't exactly happen.

Instead, we were told they would be discontinuing Deliah's cancer treatment. The new oncologist recommended surgery and pushed hard for it. I pushed right back.

This oncologist didn't understand Deliah's very complex medical history. Her tumor can not be removed! It doesn't have clear margins, the location of her tumor and it's infiltrative (growing into her brainstem)! The last 10 week break her tumor grew the fastest it's ever grown! We can't and shouldn't stop Lorlatinib. It's working! I argued until I couldn't argue anymore and cried. Deliah sat there with a beat red face, staring at the ceiling. She didn't want to cry. (She later told me she was so mad the doctor didn't listen to me)

The oncologist says, I hope you don't leave here to find Lorlatinib elsewhere.

I cried for three days.
I researched for three days.
& I started sending emails.

They gave us no other choice but to start looking into other hospitals. I narrowed it down to two. I didn't have the slightest clue how we'd afford to switch her care many states away but God would make a way.

I knew I needed to wait though.
(Recall those emails I sent)
Duke decided to take her case back to the tumor board.

I got a call yesterday & heard the words...
The surgeons said brain surgery is a terrible idea, it's impossible! You were right. The oncologist apologized and agreed to keep Deliah on treatment.

Please continue to pray for us.
Pray that we can somehow reduce Deliah's swelling.


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11/10/2025

Today was not what we expected, at all.
The rug has been pulled out from under us.
I'm not really ready to share anything more but please keep praying for us.


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IT SHRANK! Happy tears. 😭😭Deliah's brain tumor is the smallest it's ever been!BUT GOD! 😭🙌🙌
01/10/2025

IT SHRANK! Happy tears. 😭😭
Deliah's brain tumor is the smallest it's ever been!

BUT GOD!
😭🙌🙌

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