3/4/26 - We met with Dr. Linda Liau at UCLA on Monday, and she carefully reviewed all of Braelyn’s imaging.
In addition to the original tumor, the scans now show what looks like a “two-piece snowman.” Dr. Liau believes this represents one large tumor with multiple lobes rather than separate tumors. The original portion appears to be a solid mass. The newer growth has solid tumor tissue around the edges, but much of its central area appears fluid/cystic.
One concerning development is that Braelyn’s midline shift has increased from 11 mm before we left for LA to 19 mm now. This represents significant growth in a short period of time — even while on maximum-dose steroids.
A large portion of the tumor sits between the brain’s receptive and expressive language centers. Because of its location, it is interfering with communication between those two regions, which explains her speech difficulties.
Encouragingly, the functional MRI shows that Braelyn’s brain is beginning to rewire itself. Language function is starting to shift from the left hemisphere to the right — an example of neuroplasticity and her brain’s remarkable ability to compensate.
Dr. Liau’s surgical goal is to remove all visible tumor tissue — both the original tumor and the newer growth — to the fullest extent that is safely possible. She believes she can resect at least 90% of the total tumor burden, and possibly more, depending on whether a portion of the new growth is tightly adhered to a nearby artery. The intent is maximal safe resection of every accessible part of the tumor. She is hopeful that significantly reducing the mass effect and pressure will lead to meaningful improvement in Braelyn’s symptoms.
She also recommends 1–2 weeks of intensive inpatient rehabilitation immediately following surgery at UCLA. She feels the period right after debulking is the most powerful window to capitalize on neurological recovery.
The tumor tissue will be properly harvested and frozen so it can be used to manufacture a dendritic cell (DC) vaccine. This could potentially be done through:
• A future phase of UCLA’s DC vaccine clinical trial (pending FDA approval), or
• Compassionate use in the UK.
There would be enough tumor tissue to pursue either pathway, but either route would likely take several months before Braelyn would begin receiving the vaccines, which are made from her own tumor tissue and her own white blood cells.
Dr. Liau also explained that most patients who ultimately receive a DC vaccine have undergone standard-of-care chemotherapy and radiation first. She acknowledged our concerns about the risks and long-term effects of those treatments. She did not state that chemo and radiation are mandatory in order to receive the DC vaccine, but she emphasized the importance of slowing tumor growth to “buy time” until the vaccine becomes available.
Once pathology and molecular reports return after surgery, her tumor board will be better able to recommend the most appropriate next steps.
We are in a difficult position. We need to slow tumor growth to preserve neurological function and create a window of time for immunotherapy. At the same time, we are carefully weighing the potential long-term risks of radiation, particularly to the developing brain. We are praying for wisdom — and hoping that options such as anti-angiogenic therapy (Avastin) might help control growth without exposing Braelyn to avoidable long-term harm.
We are deeply grateful for Dr. Liau’s expertise, clarity, and willingness to help Braelyn. We continue to take this one step at a time.
Please continue praying for:
• A safe and successful surgery
• Maximal safe removal of all visible tumor
• Strong neurological recovery
• Clear guidance on the best path forward
Thank you for the continued prayers and support.
With love and gratitude,
Mandy and family
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Charlie James, from Charlie James Show on The WYRD FM interviewed Mandy about Cure Not Covered and shared about the benefit concert on Sunday, Nov. 9th from 2-4 PM at Central Roller Mills. Listen here!
Fox Carolina 21's Tori Carmen interviews Mandy about the Day of Prayer for Braelyn! Watch the video here!
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