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.
Physical Therapy and Kindess
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!
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!
Endotracheal intubation
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.
ER and Hospital Admission - Breathing
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.
UCI Health Chao Comprehensive Cancer Center
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!
Spinal Tap + New Doctor
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!
Biopsy results! No evidence of Leukemia!
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!
Immunosuppressant: Sirolimus and Tacrolimus
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.
Biopsy + Picc Line Removal!
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!
Ocean Therapy
After spending most of our time just driving between home and the hospital, I decided it was time for some ocean therapy on a beautiful day. Completely covered from head to toe, sunblock on any exposed skin and sporting a mask, we went to Corona del Mar and took a little stroll down the empty tree-lined streets and along the cliff side.
Day 16! Cancer Free Peripheral Blood! WBC Count of 3.0!
Much has happened in the last 16 days! As you may recall from a previous post, the stem cell transplant day is Day Zero. We are now on Day 16. The first two weeks are the hardest part of any stem cell transplant. The patient feels all the side effects of the radiation and chemotherapy from the previous week and the body has to deal with having 8.7 million new cells from another person's body. Here's now I like to compare it to a wartime scenario: The original fort (the body) is almost completely annihilated with different types of poison (radiation and chemo in this case) leaving just enough infrastructure so that the fort can be rebuilt. Once it is deemed that enough of the enemy has been eradicated, a completely new army (enemy/cancer free) is sent in to rebuild. The fort is still reeling from all the damage, and the army still has not adjusted so the first two weeks is quite rough. Hopefully, soon, all the damage slowly starts to heel, the army gets acclimated and everything works in full force to rebuilt the fort again. During that time, we just hope that no other enemy comes in to attack since neither the fort nor the army are ready for battle!During the past two weeks, unfortunately, my mom's defenseless body has had to fight some infections. She has had bronchitis in both lungs, swollen intestines and many mouth and throat sores from the radiation and chemotherapy. The hospital has kept those infections under control by varying different anti-fungal and antibacterial medications. She has been put on oxygen several times to help her breathing. She was also put on Total Parenteral Nutrition (TPN), which is food through the IV since she has been unable to eat. She has been hanging in there.Yesterday, we heard great news. Her peripheral blood is completely cancer free and her WBC is up to 3.0! We still need to wait on bone marrow biopsy to see if my uncle's stem cells have grafted and if the bone marrow is cancer free. She has always had disease in the bone marrow and not just the peripheral blood. But this news is great news so far. There is still much ahead, but this is fantastic news at this point. Next week, we will have more scans to figure out the source of some of her infections, have a bone marrow biopsy done at one point and hopefully get her eating real food again. :)Here are some references from medical resources that have some nice summaries about stem cell transplants and the donation process:http://medicine.utah.edu/internalmedicine/hematology/bloodMarrow/collection.htmhttp://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/bonemarrowandperipheralbloodstemcelltransplant/stem-cell-transplant-transplant-process
Rest Day!
Since admission day on January 19th, 2014, Mama Pham has had radiation treatments twice a day. Usually around 8am, then back again at 2pm. She hated all 10 of those Intensity Modulated Radiation Therapy appointments. Her last radiation visit was Friday afternoon. On Saturday, they gave her a dose of Etoposide, an anticancer drug with rough side effects. But today is rest day! It falls on a Sunday, on the 7th day of treatment.Her appetite quickly diminishing, partly due to the side effects and partly due to the fact that she doesn't like the hospital food. City of Hope has a fairly decent hospital menu, but since the food isn't typically Vietnamese, my mom has a hard time eating it. Outside food is not allowed unless the patient eats it within one hour of preparation. I have spoken to her doctors and dietician and at one point if she continues eating very little, she may have to put on IV food.Upcoming important dates:January 28th: Mama Pham's Birthday!January 29th: My uncle's stem cells get harvestedJanuary 30th: Transplant Day
My Uncles attends a Neupogen Injection Class
My uncle attended a class at City of Hope on how to give self-injections at home. He said he practice with a needle and something that sounds like styrofoam. As preparation for donating stem cells, the donor is required to do 5 days of injection of Neupogen. This is the same drug doctors give cancer patients, especially neutropenic patients, to stimulate white blood cell growth. He gives himself shots for 5 days, starting January 25th, 2014, then enters the hospital on January 29th to have his stem cells harvested. More details about that in a different post! In a nutshell, they used to have to take the actual bone marrow for stem cell harvesting. Now they do it with peripheral blood, immediately giving you back your own blood after taking out what they need. Pretty rad, right?
Blood samples from Vietnam have arrived!!!
After much work and anticipation, coordinating with hospitals and shipping companies Vietnam, my mom's five siblings were finally able to get their blood samples shipped in the kits provided by City of Hope! According the FedEx tracking, the samples arrived safely at City of Hope today at 9:41am Pacific. I am so incredibly excited that all eight of my mom's siblings' blood samples have arrived at the HLA typing lab at City of Hope. Now we wait for the matching process! Dr. Salhotra has indicated that each sibling is about a 25% chance of a match. With eight siblings, that's a chance of two matches!
HLA Typing - Sending Blood Abroad!
Thank goodness for siblings! My mom has 8 healthy brothers and sisters. This means lots of blood tests and Human Leukocyte Antigen (HLA) typing to determine a stem cell match. Each sibling is required to provide two very carefully labeled tubes of blood. Each tube is 10cc, for a total of 20cc per person. Since five of the siblings are in Vietnam, the HLA Typing lab in California sent five testing kits to Vietnam. Each kit has 2 tubes, 1 Instruction Sheet and 1 "Return of Specimen" form. The forms are included in this post. If the tubes are not properly labeled, the blood is rejected. There are specific instructions to not cool or refrigerate the samples. The samples are required to make it to the HLA typing office in less than 7 days. I called our family to translate all the instructions. All five siblings met at the hospital to have their blood drawn but left to go home for the following reasons:
- The clinic's office said they need to go get cooling gel to keep in the packages to keep the blood cold. This is incorrect. Must be at room temperature!
- The contacted the local post office and they refused to send any blood. They then asked FedEx and DHL. Both carriers only allow blood samples from one specific hospital in Ho Chi Minh City. So the siblings would have to go there to get their blood drawn and FedEx would have to pick it up.
We cleared up all misunderstanding! Tomorrow, my aunts and uncles will go to the main hospital in Ho Chi Minh City that has partnerships with FedEx and DHL. After getting their blood drawn, they will label everything and return everything properly packaged via overnight mail back to the United States. It has been a very interesting experience of translating and learning about localization and shipping rules in each country!Mailing Instr - HLA Testing kit - Current-Blood Return of Specimen FormReturn of Specimen Form
City of Hope Day!
It is the long awaited day of our City of Hope appointment! City of Hope is ranked as the #15 best Cancer Center in the United States by U.S. News Rankings and is also one of the NCCN's 23 hospitals.To get to this day, my mom went through 25 days of inpatient at St. Joseph's in Savannah, braved nadir during her first round of chemotherapy without getting sick, got successfully discharged and flew the 4 hour flight (like a rock star) from Georgia to California! She will have some lab work, we will meet with the doctor and explore the facility. Our discussions will include the following:
- Future chemotherapy
- Autologous vs Allogeneic stem cell transplant - most likely Allogeneic. More about this in another most. Auto is from your own stem cells; Allo is from another person's stem cells
- CNS Prophylaxis
- Treatment at a local hospital in partnership with City of Hope
- Complete Blood Counts
Wish us luck! Thank you for all the support thus far.We will get there a little early and hopefully get to explore some of their beautiful healing gardens! Here's to a healthy mind, spirit and body!
T-Cell Therapy to fight Acute Lymphoblastic Leukemia
Several weeks ago, I was sent an article about T Cell Therapy for the treatment of Acute Lymphoblastic Leukemia (ALL). Coincidently, City of Hope, my mom's new center, was also at the forefront of testing this type of therapy! I was very excited to see this interview. Below is a blurb about this new form of therapy:The experimental treatment involves isolating infection-fighting T cells from the bloodstream, genetically altering them with a disabled virus, then re-injecting the cells into the body. The virus essentially reprograms the T cells to recognize and attack cancer cells. Unlike traditional chemotherapy, which kills both healthy and harmful cells, this new technology allows the immune system to seek out and destroy cancer cells, without damaging the body’s healthy cells.Here is a direct link to the interview with the CEO of City of Hope, Dr. Michael Friedman:http://www.thedoctorstv.com/main/content/T_Cell_TherapyWe will talk to our doctor today about treatment types. It will probably NOT be this new T Cell Therapy, but it was very exciting to me to learn that my mom's new cancer home is at the forefront of ALL treatment!
Day 16 of Chemotherapy: WBC 0.6 billion cells / liter
Nadir is supposed to happen Day 10 -14 of chemotherapy. Since it is Day 16 and my mom's white blood cell count went from 0.4 to 0.6, it appears that she is on track! We just need that number to jump to 5! That would be 5,000 white blood cells per liter of blood. Once it reaches 5, we can hop on a plane to California where she will be admitted to City of Hope's Division of Hematology, a fantastic cancer center that focuses on Acute Lymphoblastic Leukemia. We have already registered at City of Hope, so now we just need our discharge papers. Go bone marrow, go! Do your thing.
Neutropenia, Nadir and Risks for Infection and Sepsis
I have read much about a neutropenic diet, nadir and infection in the past several days. My mom is currently classified as a severe neutropenic, which means she is at high risk of infection. Some definitions below.NeutropenicSomeone who is neutropenic has low levels of neutrophils. Neutrophils are the most dominant type of white blood cells. Levels of neutropenia are classified by the number of Absolute Neutrophil Count (ANC). The ANC is measured in cells/microliter of blood. Below are the classifications from Wikipedia:
- Mild neutropenia (1000 ≤ ANC < 1500) — minimal risk of infection
- Moderate neutropenia (500 ≤ ANC < 1000) — moderate risk of infection
- Severe neutropenia (ANC < 500) — severe risk of infection.
My mom is currently at severe neutropenia, with ANC < 400. Using different units, sometimes this is also referred to as 0.4, instead of 400. Where WBC count is 0.4, so the neutrophil count is even less than that!NadirNadir simply means the lowest point of something. In Chemotherapy, the red blood cells, white blood cells and platelets all have their own nadir periods. The white blood cell nadir period is critical because this is when the body is most prone to infection. My mom is current in her nadir period and it may last for another 10 days. We are on Day 10 of Chemotherapy. Her white blood cell count may not get back up to acceptable until Day 20. During nadir, we must be extra cautious. This means keeping a watchful eye on what she eats and making sure her nurses understand this as well. Surprisingly, not all of my mom's nurses are aware of her severe neutropenic state. This is quite unfortunate.Infections and SepsisNeutropenia and nadir simply means that she is at great risk for infection. Infection can lead to sepsis. We have to keep an eye on her temperature, blood pressure and urination frequency in the next 10 days. Basically, her body's army is gone and we home no little terrors come along during this time! We can only do as much as we can to keep infection out of the room and away from her. One of the ways to keep infection away is to stay on a strict neutropenic diet. This basically means avoiding any fresh foods of any kinds. This includes fresh fruits, veggies, nuts, raw spices, soft serve and anything that might foster bacteria of any kind. Here is a pretty good chart from a surviving Leukemia blog with foods that we should allow and avoid. The Leukemia and Lymphoma website also has a succinct description of foods we should avoid:
- Avoid all uncooked vegetables and most uncooked fruits. You may eat fruit that you can peel a thick skin off of, such as a banana or an orange. Cooked vegetables and canned fruits and juices are safe to eat.
- Avoid raw or rare meat and fish and uncooked or undercooked eggs. Cook meat until it's well-done. Thoroughly cook eggs (no runny yolks).
- Avoid salad bars and deli counters. Buy vacuum-packed lunch meats instead of freshly sliced meats.
- Consume only pasteurized milk, yogurt, cheese and other dairy products.
- Avoid soft mold-ripened and blue-veined cheeses such as Brie, Camembert, Roquefort, Stilton, Gorgonzola and Bleu.
- Avoid well water or boil it for one minute before drinking. At home, it's okay to drink tap water or bottled water.
So here's to the next 10 HEALTHY, INFECTION-FREE days! Go Team Mama Pham!