Type of cancer: Pediatric acute myeloid leukemia (AML) with CBFA2T3::GLIS2 fusion / RAM phenotype. She also...
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Type of cancer: Pediatric acute myeloid leukemia (AML) with CBFA2T3::GLIS2 fusion / RAM phenotype. She also presented with two myeloid sarcomas (chloromas), including orbital/head involvement. CNS/spinal fluid involvement has reportedly been negative so far. * Pathology / biomarkers: * CBFA2T3::GLIS2 fusion positive * RAM phenotype AML * FOLR1 (FRα / “FLOR1”) expression has been discussed because of potential eligibility for FOLR1-targeted therapies (STRO/Luvelta, CAR-T approaches), but current MRD findings regarding FOLR1 were considered inconclusive due to limited marrow recovery/sample quality. * PCR became non-detectable after first induction cycle. * MRD flow cytometry after induction was considered inconclusive/suboptimal because of hypocellular marrow and inadequate myeloid recovery; no definitive leukemic population identified. * Current / past treatments: * Induction chemotherapy with ADE (cytarabine + daunorubicin + etoposide) * Decitabine primer prior to ADE * Multiple supportive transfusions during count suppression * Broad-spectrum antibiotics during neutropenia (Zosyn discussed recently) * Discussions have occurred regarding possible future FLAG-IDA + Venetoclax if additional chemotherapy is needed. * Bone marrow transplant (BMT) is being discussed as a likely major component of treatment strategy depending on repeat marrow/MRD results. * STRO/Luvelta and future CAR-T strategies were discussed with experts, but STRO is currently unavailable because the company halted the program. * Recent test results / scans: * MRI showed dramatic improvement/shrinkage of the orbital/head chloromas after first induction. * PCR after induction became non-detectable. * Repeat marrow after induction showed inconclusive MRD due to low cellularity/poor myeloid recovery, though no definitive leukemia population was seen. * Current blood count recovery: * ANC recently rose from ~50 to ~120 * Platelets increased from ~45 to ~76 * Hemoglobin around ~7.8 * Clinical status currently much improved: * playful * active * eating/drinking better * afebrile. * What oncology team has mentioned about next steps: * Repeat bone marrow biopsy/aspirate planned Tuesday to reassess MRD/PCR and marrow recovery. * If counts continue improving and she remains stable, possible temporary discharge home before returning for marrow testing. * Team is discussing whether next step would be: * proceeding toward transplant if disease burden remains extremely low, * or additional chemotherapy (likely FLAG-IDA, potentially with Venetoclax). * Stanford team has been communicating with Seattle Children’s/Dr. [removed] and Dr. [removed] regarding subtype-specific strategy and evolving treatment approaches.
Hello! I'm Here to Help You Understand Your Daughter's Care
I can see from your message that you're navigating a complex and serious diagnosis with your daughter. I want to acknowledge how challenging this must be, and I'm here to help you understand her medical situation better.
However, I notice your question appears to be just "Hello..." — which tells me you may be getting oriented to how I can help, or perhaps you're not sure where to start.
Let me tell you what I CAN do for you:
I have access to your daughter's medical context, including:
- Her CBFA2T3::GLIS2 fusion positive AML diagnosis
- Her myeloid sarcomas (chloromas) with orbital involvement
- Her recent treatment response (PCR non-detectable, dramatic shrinkage of tumors)
- Her current recovery status and upcoming marrow testing
- The treatment options being discussed (transplant vs. additional chemotherapy)
What Would Be Most Helpful Right Now?
I'm ready to help with questions like:
✅ Understanding her test results — "What does it mean that her PCR is non-detectable?" or "Why is the MRD inconclusive?"
✅ Explaining her diagnosis — "What is CBFA2T3::GLIS2 fusion?" or "What does RAM phenotype mean?"
✅ Clarifying treatment options — "What's the difference between FLAG-IDA and the chemotherapy she already had?" or "Why is transplant being discussed?"
✅ Preparing for upcoming tests — "What will the repeat marrow biopsy show?" or "What should we expect?"
✅ Understanding biomarkers — "What is FOLR1 expression and why does it matter?" or "Why was STRO/Luvelta discussed but isn't available?"
✅ Questions to ask her care team — I can help you formulate specific questions for your oncology team
Please Share Your Specific Question
What would be most helpful for you to understand right now?
For example:
- A specific test result or medical term?
- How her treatment is working?
- What to expect at the upcoming marrow biopsy?
- The pros/cons of different treatment paths being discussed?
- How to talk with her care team about next steps?
Once you share your specific question, I can provide detailed, evidence-based educational information tailored to her situation using the latest NCCN Guidelines for Pediatric AML and other authoritative sources.
This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.
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