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.
Some days, the acts of kindness of strangers is overwhelming. Many thanks to Cheryl, a physical therapist across the country, who sent my mom a personalized Physical Therapy package in the mail after learning about the weakness and weight loss she has experienced after the last round of chemotherapy and Donor Lymphocyte Infusion.
Up until February of this year, my mom has started to gain weight, slowly returning to normal. Then we heard news of the relapse. That was when we went through three more rounds of chemotherapy, and a Donor Lymphocyte Infusion. All caused various side effects that made it harder to eat including nausea, throat constriction, mouth sores, and loss of taste. Then she had really bad swelling of the feet, which made it difficult to walk and exercise. The combination of both resulted in a greater loss in weight, bringing her down to 82lbs. In February, she had slowly climbed back up to 94lbs, which was a great accomplishment! Before cancer, she was 125lbs and very active. We will slowly get there again, especially with help from people like Cheryl!
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!
This past week, I learned about endotracheal intubation after Mama Pham was admitted to the ER for difficulty breathing due to a swollen trachea (aka windpipe). This is a procedure where a tube is place in the trachea to open the airway to the lungs and assist breathing. Since it was an emergency situation, they placed it through her mouth. To test if the swelling has been reduced, they deflate a part of the tube that is like a little balloon to see if they can hear any air leaks coming up from the lungs. If there are no air leaks, then it means the trachea is still too swollen.
Today, my mom was admitted to the ER because she had difficulty breathing. Shorty after admission, her trachea started to close and she had to be intubated to keep air going to her lungs. Lucky for her, the nurse, Jane, at UCI was quick to act and took her from UCI’s clinic over to the emergency department! The only thing that changed in her daily routine was that she received six vaccinations a few days earlier. Our theory is that she may have had an allergic reaction to one of the allergies.
We love UCI! My mom and I had our first consultation at the UCI Health Chao Comprehensive Cancer Center in Orange County. This is a continuation of my search for a local oncologist for my mom now that she is past her 100 days post-transplant. I would love for her to stay solely at City of Hope (COH), but the drive takes quite a toll on her. Plus, if there is a real emergency, it would be good to have a local hospital that has her records. Thankfully, the entire experience with UCI was fantastic. I am very excited to get to know the hospital and the team. I took the first flight out of San Jose on Monday morning and last flight out of Orange County to return back home. It was quite a flashback to my consulting days. This time, my business objective was: “Establish good local oncologist for Mama Pham.”
We originally picked St. Joseph’s as her local oncology office. After our initial 2 visits, I did not feel at ease leaving her under the care of St. Joseph’s Hospital so I did some more research, talked to some more people and setup an appointment at UCI. Several factors contributed to my decision to move her out of the St. Josephs of Orange County care system. I may write more about that in a different post. The entire experience at UCI was so refreshing. Below are several key points that made our visit great and set me at ease as I returned to San Jose:
- Complimentary valet with a great staff. This saves my mom from having to navigate a parking deck and is definitely a great perk for days when she feels particularly weak
- A friendly reception desk with very competent receptionists and schedulers
- An easy scheduling process. This is important because she requires many appointments, sometimes involving multiple departments and multiple doctors.
- On-time appointment even in the afternoon
- Great nurses
- Easy navigation of the building
- Most importantly, we loved our new oncologist. My mom was very happy; it is very important that she feels comfortable going to the hospital and seeing the doctor.
Each little battle won always feels great. Our battle this time was finding a good local oncology team to continue the great work of all the doctors from City of Hope, and be well-prepared if anything happens. Hooray for UCI!
Today will be Mama Pham’s first big procedure at the local hospital. So far, she has had all treatment at City of Hope, her transplant hospital. Today, she will be getting a CNS Prophylaxis (Spinal Tap + Chemo) done at St. Joseph’s Hospital in Orange County. The travel to City of Hope (35 miles, about 1 hour drive) takes a toll on her so she will get some of her procedures done locally in at St. Joseph’s (7 miles, 15 minutes). The procedure is fairly quick, but requires 2 hours of stationary, lie flat recovery. We do not want any leakage of the spinal fluid into the body! The leakage can cause headaches and tingling sensations.
She needs a total of 6 preventative CNS Prophylaxes. 3 down, 3 more to go!
Mama Pham’s 100 Days Post-Transplant Biopsy came back clear! There are no Leukemia cells present. She is currently cancer-free!
She has dropped to 92lbs and is still taking about 12-14 meds per day, but we are definitely one huge leap closer to full remission. She is not considered to be in full remission until the 2 year mark. 110 Days Down. 630 Days to go!
We are currently at a stable state of 0.5mg Sirolimus and 1mg Tacrolimus. These are both immunosuppressant drugs. Their doses are adjusted twice a week, after the Complete Blood Count lab work reveals the chemical make-up of Mama Pham’s body. Too much of these drugs can compromise the health of the body’s organs as well as suppress the immune system too much, preventing it from fighting lingering cancer cells and other infections. Not enough immunosuppressants can increase the risk of Graft vs. Host Disease (GVHD). The goal is to have the perfect amount each day to suppress the immune system enough to prevent GVHD, but still keep the body healthy and strong with the ability to fight the bad guys.
Today is Day 102 post-transplant. Mama Pham went to City of Hope for a bone marrow biopsy and picc line removal. We get the results of the biopsy in a few days. With the removal of the picc line, she no longer has to worry about infection from external devices! Showering will also be much easier. One step closer to a normal life!