Category: Logistics

It takes a village

Well, a team of doctors.

Reflecting on this whole week, we have had meetings with the following departments and doctor:

  • Stanford Ear Nose Throat (ENT): the tracheotomy tube to assist with breathing, and to take a biopsy of the throat.
  • Stanford Radiology: MRI and PET CT of the throat area
  • Stanford Blood and Marrow Transplant (BMT): to discuss graft vs. host disease and effects of transplant on relapse
  • Stanford Hematology Oncology: to discuss options for Leukemia growth in throat area and treatment options- radiation, chemo, do nothing
  • Stanford Radiation Oncology: to discuss options for radiation of the throat area
  • Stanford Palliative Care: to discuss ways to continue some sort of normal lifestyle while undergoing treatment
  • City of Hope Oncology: In addition, since Radiation Oncology is a new addition, we needed to set up a new patient appointment even though we have been at Stanford for over a year. Radiation Oncology requested the DVH – Dosage Volume Histogram of past radiation treatments. This did not exist in the records City of Hope sent to Stanford last year. I have used Grand Rounds and Picnic Health to help us gather medical records in the past, and they did not have it either. It appears that Radiation Oncology has its own data system and even though a full medical history has been requested in the past, their records were not included. Calling the Medical Records office at City of Hope took too long, so I contacted our oncologist directly who helped us get records over to Stanford. Thank you City of Hope!

I spent about 2 hours one morning coordinating the appointments around other commitments, optimizing the timing of each one. Palliative Care is scheduled after the meetings with Hematology and BMT. And Radiation Oncology is scheduled last since that is a final resort and we just want that team on standby in case we want to go down that path. Now on to gathering more data, more debugging, and finding a solution!

Hospital Admission Day!

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.
  • Prednisone
  • CT Scan of the Lungs to use as a baseline
  • Chair Yoga
  • Art Class
  • Several great nurses

Back Fighting!

On February 11th, 2015, we found out that my mom has relapsed. This means we are back fighting, stronger than ever. First round of chemo done. We will meet our new Acute Lymphoblastic Leukemia doctor at Stanford next Thursday to discuss the future plan of action. This be will our fifth hospital during this battle. So far, in the past 1.5 years, she has had a total of 5 rounds of chemotherapy, radiation, a stem cell transplant, and six rounds of CNS prophylaxis (chemo in the spine). She is one of the toughest women I know. The following is the list of our hospitals and doctors. We had to do some searching to find the right oncologists for us, but the talented and compassionate oncologists who we have worked with so far have been amazing with communication and discussion of treatment options.

  • St. Joseph in Savannah, Georgia: Dr. Grant Lewis. First diagnosis in August 2013. First round of chemo.
  • City of Hope in Duarte, California: Dr. Amandeep Salhotra. Three more rounds of chemo, radiation, and a stem cell transplant. 
  • St. Joseph in Orange, California: Moved on after two visits because of the poor quality of care.
  • Chao Family Comprehensive Cancer Center at UCI in Irvine, California: Dr. Deepa Jeyakumar. Follow-up visits closer to home after stem cell transplant.
  • Stanford Cancer Institute in Palo Alto, CA: Cancer center that is closer to me!

On the bright side, this has been a quite the opportunity to do ethnographic research of healthcare data interoperability between hospitals of the private sector! 

Happy Day 100!

Today is Day 100 post-transplant for Mama Pham! Just in time for Mother’s Day. Day 100 is the day when a patient can reduce the amount of doctor visits and lab work from twice a week to once a week. They can also start seeing their local oncologists. I will greatly miss the care from Dr. Salhotra and the City of Hope team. However, I seeing a doctor closer to home will help with Mama Pham’s spirits. She will still go to see Dr. Salhotra once a month at City of Hope in Duarte, CA. Her weekly visits, however, will be locally with Dr. Mummaneni at St. Joseph’s in Orange County.

Hooray for Day 100! Her taste buds have not returned, she is still on a neutropenic diet and is still week, but is definitely in a much better state than Day 0!

New Transplant Schedule

We have an updated stem cell transplant schedule due to insurance approval issues.  Hopefully all has been resolved.  Below is the updated schedule both for Mama Pham and her brother, Cau Thanh, the donor.

Mama Pham:

  • January 17th: Palifermin 60 micrograms/kg in OPD
  • January 18th: Palifermin 60 micrograms/kg in OPD
  • January 19th: Palifermin 60 micrograms/kg in OPD; Hospital Admission
  • January 20th: IMRT x 2 (Intensity Modulated Radiation Therapy)
  • January 21st: IMRT x 2 (Intensity Modulated Radiation Therapy)
  • January 22nd: IMRT x 2 (Intensity Modulated Radiation Therapy
  • January 23rd: IMRT x 2 (Intensity Modulated Radiation Therapy)
  • January 24th: IMRT x 2 (Intensity Modulated Radiation Therapy)
  • January 25th: Etoposide 60 mg/kg (ADJ BW)
  • January 26th: Nothing
  • January 27th: Cyclophosphamide 100 mg/kg (IBW)
  • January 28th: Start Tacrolimusl Loading dose of Sirolimus
  • January 29th: Continue Tacrolimus and Sirolimus maintenance
  • January 30th / DAY ZERO: INFUSE FRESH DONOR PBSC 
  • January 31st: Palifermin 60 micrograms/kg
  • February 1st: Palifermin 60 micrograms/kg
  • February 20th: CMV qPCR draw every Mon & Thurs; consider PCP Prophylaxis

The day of Stem Cell infusion is called Day Zero.

Cau Thanh:

  • January 25th – January 28th:  Neupogen shots to stimulate WBC production
  • January 29th, 7:30am: Stem Cell Harvesting!