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!

Great labs!

Another beautiful day at Stanford Cancer Center. 8.4 WBC, 12.2 Hemoglobin, 158 platelets! Hopefully gone forever are the days we anxiously await lab results to tell us if we have to stay for a blood transfusion or platelet transfusion. Those Leukemia blasts are staying away. On to side effect management of GVHD and neuropathy. Another beast in its own right, but experimenting different ways to pair food, exercises, vitamins, herbs, etc, with pills to get back to normal. Still crazy impressed with my mom's ability to make delicious means without working tear ducts (no crying when cutting onions!) or saliva glands or taste buds! Ha. Resilience FTW. Beating Leukemia.

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.

Appointments

Today, I thought to myself: we only have three doctors' visits this week, and they are all check ups or physical therapy! So thankful that we no longer have weeks of 10+ tubes of lab draws, waiting on results, getting blood or platelet transfusions, and chemo. We are in the good appointments phase!

Graft vs. Host Disease (GVHD)... it is here!

Well, we knew this was coming, but had no idea how bad or good it would get. When my mom got her stem cell transplant last January 2014, she showed zero signs of graft vs. host disease. That was great because she didn't have the crazy symptoms, but some doctors believe the lack of GVHD could have meant that the stem cells were not doing that much fighting. What is GVHD, you ask? It is when the new cells attack the body (the host). My uncle's healthy white blood cells, in the process of fighting the Leukemia, also attacks the skin, the digestive tract, the mouth, and potentially other organs. Her current symptoms:

• Dry, crusty eyes. In the evenings, her eyes start getting very crusty. By the morning, it is difficult to open her eyes. We are trying Refresh Tears to help lubricate her eyes and lessen irriration
• Skin Rashes. Most of her upper body is covered in rashes. We have found fresh aloe to help with this. We have three Aloe Vera plants out front! Horray!
• Dry mouth and throat. No matter how much water she drinks, her mouth and throat feels dry. This is definitely an attack of the mouth.  We have tried salt washes and coconut oil but nothing works. Today, the doctor subscribed a dexamethasone mouth wash to help with the irritation and inflammation.

We want some GVHD to happen to show that the infused cells are working (doesn't seem very scientific, I know). We do not have any real way to show that the donor infused lymphocyte worked. All we can test for is if it does NOT work and we start seeing Leukemia cells again. So for now, to manage the symptoms in the body, we are doing the following:

• artificial tears
• dexamethasone mouth wash
• aloe on the skin
• keeping my mom busy walks, dinner parties, and excuses to make food!

Donor Lymphocyte Infusion Day!

IT IS MINI-TRANSPLANT DAY (aka Donor Lymphocyte Infusion)!!!How I like to explain this infusion: There are two bad things going on right now. The bone marrow is broken so it makes bad white blood cells. So we are dealing with an evil army, and a broken factory that makes an evil army. The stem cell transplant in the past didn't work to fix the broken factory, so now we're taking a new strategy. Instead of doing all stem cells, we are extracting just the lymphocytes. These lymphocytes like the top notch seal team white blood cells. The one downside is that these fighters are so aggressive that sometimes they also fight other things like the liver and kidney and skin in the process. They're not smart enough to always distinguish. Anyways, we are going to infuse the body with these aggressive good imported fighters, and they are going to attacked any leftover evil army, fix the broken, factory, and restore order to all!A quick history: Since August 2013, we have done 7 rounds of chemo, 6 spinal taps with chemo, policy hacking to get blood samples sent from Vietnam, radiation, a stem cell transplant, kidney stone removal, and blood transfusions across 5 hospitals in 5 different cities. For a while, we celebrated while the Leukemia went a way and those bad guys disappeared. In February 2015, we found out they must have been hibernating because they came back in full force. We were told some dismal statistics, but healthcare data is super fuzzy (Precision Medicine is still the future) so we charged forward. Two more rounds of chemo later, another trip to America for my uncle to donate cells, and now we are ready to infuse them not my mom. Woo! We won't focus on the fuzzy data around success rates, just the small victories that have allowed us to get to this point. As of today, she is strong, she is well, and ready for those new, good, lymphocyte white blood cells to go attack the bad, mutating cancer cells.

Donor Lymphocyte Infusion Planned!

Since Mama Pham has responded well to the last two rounds of chemo (no Leukemia cells present!) we are clear to move on to the Donor Lymphocyte Infusion! Dates below:July 6th, 2015: Awesome donor uncle gets labs (must be within 7 days of donation)July 9th: 2015: Awesome donor uncle sits with an apheresis machine and donates lymphocytesJuly 10th, 2015: My mom gets the lymphocytes and we being our journey of watching for Graft vs. Host Disease (GVHD) and hope for full remission forever and ever!

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.

Last day of Chemotherapy #7

Today is the last day of Chemotherapy #7! Mama Pham got a dose of Vincristine in about 10 minutes and is free to go home to await the blood count recovery process. When we started this journey in August 2013, I met people who were on their 6th or 7th round of chemo and thought that just seemed so far away. It seemed so exhausting, so extensive. Now, one and ten months later, time has flown and sometimes I cannot believe all the things that my mom's body has endured. She is the strongest 85lb woman I know.Over the past almost two years, we went from one procedure to another, one round of chemo to another, one blood draw to another, and slowly just walked our road to beating cancer. Each day was another day of hope, hope that the next blood count wouldn't yield any blasts (Leukemia cells) in the blood stream, hope that we will be in remission forever. Hope sustains us and keeps us charging forward.

More Chemotherapy

Even though the biopsy results are clear, the Blood and Marrow Transplant (BMT) doctor at Stanford wants to do one more round of chemotherapy for a deeper remission before going into an Donor Lymphocyte Infusion (DLI). The regimen:Intrathecal MTX on day 1Cyclophosphamide infusion on day 1Cytarabine days 1-4 and 8-11Vincristine days 15 and 22PEG asparaginase day 15

Biopsy Results are Clear after Chemo!

Mama Pham's biopsy came back clear! On April 1st, she started on the CALGB 9511 regiment for her relapsed T-Cell Acute Lymphoblastic Leukemia. This was a very aggressive regimen with asparaginase, and Mama Pham definitely had some tough days. This is her 8th round of chemo overall. None of the other chemotherapy regimens over the past 1.5 years have EVER brought her to full remission (Hyper CVAD, Nelarabine), and they did the Stem Cell Transplant last year with active Leukemia (not ideal). We are not fully in the clear because we still need to do a Donor Lymphocyte Infusion from my uncle, but this gives us a clear to charge forward and that we will! Many thanks to our amazing family of supporters and the doctors at City of Hope, UCI and Stanford for getting us to this next milestone. I am forever grateful.

Neupogen

Neupogen is a drug used to stimulate the development of white blood cells (WBC). Chemotherapy patients are often given this shot in the stomach to help the WBCs regenerate. Although that sounds peachy, I always have been a bit skeptical about using a drug to mess with the chemotherapy and artificially cause the bone morrow to produce more white blood cells. However, when doctors tell you that you need it because the WBC count is so low that deadly infections can happen, you agree. However, a few days into it, I realized a few items:

• Not all doctors prescribe Neupogen. When I pushed back on Neupogen, eventually some doctors indicated it was optional, which leads me to the wonder why doctors just give patients such a strong shot without really discussing it in the first place. Giving hospital inpatients drugs without really discussing impact and need is another issue.
• When a nurse found out we had a biopsy scheduled in a few days, she told us to stop Neupogen immediately because it can cause an artificial count of cancer cells (blasts). No one mentioned this previously, but all the Nurse Practitioners and Physicians Assistants at Stanford agreed that we should stop Neupogen several days prior to a bone marrow biopsy.

I know that Neuopgen is prescribed so neutropenic (low white blood cell) patients do not get sick. However, it is always critical to know why it is given, and if it makes sense My continued lesson here is that the need to have patient advocate or be your own patient advocate is so high. Nurses and doctors, no matter now brilliant, do not always have the full picture of each individual's treatment plan, so we need to tell them.

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! 

Hospital Update

2/12/2015: Admission to UCI Hospital for difficulty breathing. Endotracheal tube inserted to help with breathing2/14/2015: First dose of Nelarabine chemotherapy2/16/2015: Second dose of Nelarabine chemotherapy2/17/2015: Exubation. The breathing tube was removed from her throat.2/18/2015: Third dose of Nelarabine chemotherapyMama Pham is a trooper!

First Day of Chemo Done!

There is a lot to update but I will do that later. Just came to say that my mom needed some more chemo and the first dose of Nelarabine just finished! It took about 2 hours. There are two more doses left on the 16th and 18th, then we wait for the cycle of blood count drops to occur.

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. 

Last Chemo Ever!

On October 6th, my mom had her last ever CNS Prophylaxis, which is a procedure that includes a spinal tap and a little bit of chemo into the central nervous system. This means we are completely done with chemotherapy! Woo Hoo!

Kidney Surgery Scheduled!

Kidney stone surgery is scheduled for Monday, September 15th! We have been awaiting this day for a long time. The kidney stones were discovered around October 2013. Because of the chemotherapy and weak immune system, the doctors at City of Hope installed a kidney stent to assist the kidney functions. The stones are quite large and couldn't pass on their own. Now that my mom is healthier with more stable white blood cell, hemoglobin and platelet counts, will finally have them removed! The doctors at UCI believe that they may be able to remove them with wave technologies and no invasive surgery. This would be ideal. The doctor at City of Hope had discussed invasive surgery with us since they thought the stones were too large to remove with waves alone. UCI did tell us that there is a chance they may need to make a last minute decision about doing something more invasive if breaking up the stones with wave technology is not effective. We are optimistic!

One Year!

Exactly one year ago, Mama Pham was admitted to St. Joseph's Hospital in Savannah, Georgia. August 10th, 2013 was the start of our family's fight against cancer. Exactly one year later, she is currently cancer free. Words cannot express the gratitude I have for all our family, friends, supporters and incredible medical personnel who have helped us through this time.

CNS Prophylaxis #5!

I have a backlog of posts about CNS prophylaxis side effects, kidney stones, a nephrolithotomy, and hospital staff. Hopefully I will get around to those soon!Today is Mama Pham's fifth CNS Prophylaxis. I have written about this procedure in the past. It is chemo that is inserted into the spine as preventative measure. Leukemia cells can infiltrate the Central Nervous System, but normal chemo cannot. Therefore, oncologists take preventative measures and insert chemo directly into the spine. While doing so, they first draw some spinal fluid to test for irregularity. The process of puncturing the spinal tissue and drawing fluid often causes patients to get extreme headaches because of the depletion of fluids around the brain. This can be remedied with drinking fluids or getting fluids through IV. However, if there is a leak at the puncture point, spinal fluid continues to leak into the body, causing continuous fluid depletion around the brain. That causes continuous headaches, nausea, dizziness and neck pain that cannot be remedied by much, not even strong pain medications. The leak is caused by the body's inability to quickly heal the wound.She has had very different reactions to the past four procedures. Here's to a successful, pain-free, headache and nausea free Lumbar Puncture!