Today, Mama Pham was admitted to Stanford Hospital’s F Pavilion to start CALGB 9511 with asparaginase, a more aggressive chemotherapy regimen than she has had in the past (Hyper CVAD, Nelarabine). If she responds well, the next step is Donor Lymphocyte Infusion. Her brother will be asked to come back to the U.S. So far, she has had the following:
- Lumbar Puncture with methotrexate. The resident and fellow both tried to do her initial LP, poking her a few times, unsuccessfully. The Nurse Practitioner tried again the next day had much better success. Lesson learned: Nurse Practitioners rock!
- Three doses of chemo: Vincristine, Daunorubicin, Cytoxan.
- CT Scan of the Lungs to use as a baseline
- Chair Yoga
- Art Class
- Several great nurses
My brother and I making sure Mama Pham was included at the First Lady’s Reception.
The State Dining Room, The White House, January 20th, 2015
This is the current state of healthcare interoperability. I wrote my mom’s medical chronology to our new oncologist. The medical release form for City of Hope got lost somewhere so Stanford still does not have her records from City of Hope. The records sent from UCI were not as comprehensive as they need. I was told by the nurse that they don’t have any records they can use. Also, a pile of faxed records is oftentimes too difficult to consume that it’s easier for me to just tell new medical teams what happened. This is not ok. Not everyone has a patient advocate. There needs to be a better way for busy, brilliant doctors to consume large amounts of patient healthcare data. This is why I care so much about healthcare data interoperability.
Made my mom a food cheat sheet today for foods that are iron-rich and have high anti-cancer, anti-inflammatory traits.
Om Nom Nom!
Today was Bone Marrow Biopsy Day. The biopsy was performed by a nurse practitioner named Rhonda. She was the best biopsy experience that my mom has ever had. Thanks Rhonda!
My mom’s hemoglobin counts dropped to 7.9, she she got two units of blood. I told her that Lance Armstrong would WILLINGLY get transfusions. So it’s a good thing. Not that she’s trying to enhance her performance to ride up any mountains anytime soon yet. We’re just trying to make it one mile down the street. 🙂
We visited the Stanford Cancer Institute today. More details to come soon. It is definitely interesting to witness how different hospitals operate when it comes to medicine, facilities, records coordination, parking, communication, electronic records, and many other areas. This is our own personal ethnographic study of healthcare interoperability!