DeliahBrave

Lots of upcoming appointments over the next 5 weeks. Lots of driving back and forth. 😮‍💨 Next week Deliah has botox at UNC - then she will be reevaluated again by the Duke vision rehab specialist. It will hopefully be super helpful for school recommendations. 🤞🎒📝

I've felt a little mentally stuck this week. 🫯 I finally made a call this morning to see when we can get Deliah into the Duke genetics clinic. Waiting on a call back and we'll go from there. 🧬🔬

10 more days to get your orders in! 👕



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We are finally back home, but it was a long, exhausting week with zero progress made. I’m at a complete loss for words with where things stand.

I requested a lymphedema specialist while inpatient but that wasn't possible. A referral was sent, however. The nephrologist asked if rheumatology had evaluated her swelling? We've actually seen them twice - I wanted a second opinion. We were told it's "chronic inflammation." It is so hard hearing "we don't know" for seven straight years. Someone has got to have more answers.

Next steps:
•Lymphedema Specialist
•Genetics - they quoted us a 12-month wait time 🤯

Does anyone know a hospital with a shorter waitlist for pediatric genetics? I am willing to travel anywhere to get her seen sooner. 🧬

As an ALK+ friend said, Deliah is truly a unicorn in a field of zebras. 🦓🦄🦓

Glad to be home, even without answers or forward progress. Back to the drawing board Monday. 😕




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Today was another really hard day. The floor oncologist refuses to listen to a word I say and has been super demeaning. Some people truly shouldn't work with pediatric cancer families, and he is one of them.

Thankfully, the nephrologist has actually been listening, but overall communication has still been lacking across the team. It only makes things harder when the main oncologist in charge is just trying to push Deliah out the door. It’s maddening to know more about pediatric ALK+ and treating kids on Lorlatinib than the doctor does, only to be continually dismissed and ignored. I wish we were closer to a major hospital with more expertise in ALK+.

Ending the night thankful for this pretty sunset. Who knows what tomorrow will bring.


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Yesterday started off terribly. My car had a ton of ⚠️ warning lights but thankfully we made it to Duke safely. Need to get the car checked asap. 😰 After waiting a few hours in the clinic for a bed to open, we got settled into a room.

Deliah was finally given a round of IV lasix around 5pm yesterday but had to hold her overnight dose because her blood pressure dropped. We were able to get her second dose today at 1pm. I hope we can get on a consistent schedule moving forward.

It's going really slow. Nothing has really gone as planned. Two frustrating days in a row. I didn't feel heard at this morning's rounds. I've brought up my concerns numerous times today, however. I guess we'll see how tomorrow's rounds go... Hopefully with better communication and clearer answers. ❤️‍🩹

We've both spent time crying today. We both need sleep.





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ICYMI: new shirts are available for pre-order until October 18th. See the pinned post & fill out the google form!


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We had our video call with CHOP today. It went well, though it went in a direction we weren't expecting. They recommended Deliah be evaluated by a genetics clinic. Hearing that both Duke and CHOP have an 8-12 month wait time was a gut punch, but we are praying they can get her seen sooner.

​In the meantime, Deliah is heading inpatient this Monday. She has loved opening all the surprises arriving in the mail and has been packing them up for her hospital stay. 💕

​Last but not least... our shirts are finally ready for pre-order, $20/shirt. A huge thank you to Cape Fear T-Shirts, LLC for helping us bring these to life. $9 from every shirt goes directly toward Deliah's medical care and travel costs. If you'd like to order, please fill out the Google Form linked below. ​As always, thank you for your support! 🫶

•Order deadline: October 18th


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shirt order form ​Deliah has spent the last seven years bravely battling brain cancer and navigating the harsh side effects of treatment. $9 from every shirt sold goes directly toward Deliah's medical expenses and frequent trips to Duke. We are so grateful for your support and hope you love wearing this shirt as m...

Deilah will be admitted to the hospital in the coming days. Her swelling has gotten out of control. We’re praying IV diuretics, and trying a slightly different approach this time, will bring her some relief.

​We also have a video visit with CHOP in a couple days. Fingers crossed for good news and direction. 🤞

Last weekend, hundreds of people gathered on the National Mall in DC to unite the childhood cancer community, raise awareness, and advocate for safer, less toxic treatments. They displayed an 800 foot tribute wall listing hundreds of angels and brave fighters. I hope we can see it in person one day. I’m so thankful another sweet mom snapped a few photos for us. 💕🎗

If you'd like to send Deliah a little pick me up, amazon wish list in the comments. 🫶


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Well... the Duke Complex Care clinic is out. 👎 Come to find out it is not a good fit for Deliah. *major sigh*

We have now inquired into the Undiagnosed Disease Program at Children's Hospital of Philadelphia and simultaneously reaching out to the National Institutes of Health (NIH) Undiagnosed Disease Network to see if Deliah would be accepted into a research study. Super thankful her NP at Duke is helping us sort this out.

Deliah's pain affects her daily life so tremendously. I really hope she's accepted into one of these institutes and we're not waiting a long time to hear back or be seen. She's already suffered so long.


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No more playing detective! (I hope)
After years of endless doctor appointments, dead ends, and hearing "I don't know," a nauseating amount of time... We finally have a path forward!

Deliah's oncologist agreed that we need a big picture approach and has submitted a referral to the Complex Care Clinic at my request! 🙌 She will have an entire multidisciplinary team pouring over her case and hopefully consolidate her care.

I have researched and cried my eyes out over the last several years trying to figure it out myself. Hoping and praying they review Deliah's case quickly, we're not waiting long for an appointment and truly hope we're finally able to get some answers. I hope someday soon Deliah's pain will at least be manageable. 🤞❤️‍🩹

✨️PS: Does anyone local want to help us with Deliah's new tshirt? We have the design ready to go, just need help printing/processing orders. Please reach out! 👕




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