Category: Hospital

Some Updates

I owe this community so many updates. There are fourteen half finished drafts since May 2016. I will wrap those up some time. May was when things got hard. The cancer got more aggressive and we were focused on our next steps.

Mama Pham passed away on September 12th, 2016 at Stanford Cancer Center with family and a caring team of doctors by her side. We had three years together of quality time, fighting the disease, and disrupting hospital and healthcare bureaucracy.  I am thankful for the time together. Today is her 1/2 year death anniversary and I am still sifting through it all, and still very committed to the mission of cancer sidekicking and beating Leukemia. For now, giving myself a little more time to remember and honor Mama Pham.

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!

Busy week at Stanford!

As with all cancer battles, side effect maintenance is a must. This week in Side Effects, we have a closing throat, dry eyes, sore and dry both, and peripheral neuropathy. Our various doctors and specialist appointments are usually scattered, but looking at our schedule for next week, I found that we will be at Stanford almost every day (had to clear my Wednesday for a few immobile work commitments) to comprehensively cover everything that needs to be addressed! I found this view rather interesting and wanted to share.

Sunday MRI of the brain and larynx: About 8 months ago when my mom lost all her hair after chemo, she hit her head pretty hard on the edge of a table. At that time, it was painful but the pain slowly went away. Plus, we had other things to worry about, like getting rid of the cancer. Then recently, the head pain returned. We don’t know if it is related to the small trauma, or something else (like the repeated chemo in her spine or delayed side effects). After several visits to the oncologist and PCP and persistent pain, we all decided an MRI would be best. Then while there, since she also is experiencing breathing problems (had to take a trip to the ER at one point, but that’s for another post), we added on an MRI of the larynx. We think her throat is operating at 50% capacity due to some build up (maybe protein) of sorts. What this means is that the moment she has a cold or slight allergies, her throat basically closes up making it hard or almost impossible to breathe. For most of us, having some allergies or phlegm in our throats are no big deal since the throat has the capacity to handle it.

Monday Routine monthly oncology visit and labs: We see our bone marrow specialist once a month to check blood counts, overall health, and progression of Graft vs. Host disease. This usually means a quick health check, making sure blood counts are good, and adjusting medications (like prednisone and tacrolimus) as needed. And if we have time, a free added chair massage courtesy of Stanford Cancer Center!

Tuesday morning Eye Doctor and afternoon Physical Therapy: Both these visits are to manage side effects of the chemotherapy, radiation, and donor lymphocyte infusion (DLI). The DLI has cause graft vs. host disease in the eyes, causing them to be very dry and producing almost zero tears. The ophthalmologist has put in tear duct plugs to try to retain whatever tears her eyes do make, hoping that one day the tears will return. We see him about every 6 weeks to check in. The physical therapy appointment is in response to the peripheral neuropathy and weakness caused by the chemotherapy (most likely the vincristine). My mom loves her physical therapist Shannon, and both the strengthening exercises as well as the conversations they have help improve her health. She used to not be able to get up out of a chair or close the trunk of a car. Now she can do all those things.

Wednesday break day!

Thursday pre-op visit for the throat biopsy: Last Monday, we went to the ER because my mom couldn’t breath. Her throat had almost closed up entirely. With a camera in the throat, we discovered that some build up has been causing the throat to operation at about 1/2 capacity, making air intake harder. Her oxygen levels come back at 100% and her lungs are clear (Xray and listening), so we will do a biopsy to see what the build-up might be, and if there is a way to manage it. One of the ENT doctors think it might be Amyloidosis of the throat, but that is usually only seen in AML patients, not ALL (What my mom had). The oncologist and I are skeptical of the amyloidosis diagnosis, but we all agreed that a biopsy of the throat, taking about a 1-2mm sample, will help us decide.

Friday biopsy day!

One question I always ask at every step is What are the side effects of these procedures. If the MRI and biopsy will cause other complications, we need to know so we can make informed decisions about whether or not to proceed. We’ve been told that the side effects at trivial and the danger of not finding out the cause of some of these problems may be worse. It is always a trade-off of waiting to see if the body will take care of itself, or if we need to intervene is some other way. In this case, we shall proceed with more modern medicine interventions.
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Happy New Year!

2015 for us was a year of Leukemia relapse, more treatment, new hospitals, new doctors, testing new treatments, and finally the joyful news of another round of cancer-free remission!

Cheers to more joyful days for all, continued support, figuring out how to make health data interoperability happen, getting our health data back, continued world wide collaboration and knowledge sharing, and the defeat of cancer.

Biopsy Day + Gratitude + Joy!

Today is biopsy day! This is the biopsy after 7 rounds of chemotherapy and a bone marrow transplant (January 2014). The results of this biopsy will determine if we move forward with the Donor Lymphocyte Infusion (DLI). If still in remission, then proceed with DLI. If not, then must discuss other, more difficult, conversations.

While driving to the hospital with my mom, listening to stories of her early years in Vietnam, and later working remotely from the hospital waiting room, I felt a wave of gratitude and joy for the ability to be with my mom and advocate for her and others during this time.

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

Healthcare Interoperability

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.

 

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Stanford Cancer Institute!

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!

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!