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.

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.12932916_10101684857753479_448547730363891868_n11204382_10101684857743499_4792719134469591011_n

World Cancer Day.

It is World Cancer Day. It is not always easy, but grateful for the teams of friends, family, doctors, nurses, schedulers, and advocates who have been with us on this 2.5 year journey. And for the opportunity to apply what I've learned here to something much bigger.All you cancer survivors, rock on! All you in the battle, it sucks, fight on and hang in there. And all you caregivers, I completely understand. You rock so very much.

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.

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.

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! 

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.

Party!

We got all dressed up and went to a Bridal Shower the day before my mom's 1 Year Anniversary Bone Marrow Biopsy. This in One Year and Nine days after Stem Cell Transplant. She looks beautiful!MommyMeMommyMe2

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!LastChemo

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!

Intrathecal Chemotherapy Side Effects

Yesterday, Mama Pham had a very bad reaction to the Intrathecal Chemotherapy (IT) done at St. Joseph's Hospital by Dr. Joseph Tison.  She had two rounds of IT done in the past at City of Hope with little issues. This time, she had a painful sensation at the bottom of her spine that caused her to have body spasm for about two hours.  Dr. Tison by once she developed the reactions, but said he did not know the cause and stated he had never seen that kind of reaction in the patient.  He was unfamiliar with the chemotherapy drug (Methotrexate) that he injected in her. My mom had a similar tingling sensation in the past, but it only lasted about 10 minutes.  The nurses and I triaged the situation and concluded that it probably was just an irritated nerve. We hypothesized that the liquid that was injected irritated a nerve and caused the tingling.  This meant that as the liquid slowly dispersed through the Central Nervous System, the tingling and irritation would go away.  After about two hours, the tingling did indeed go away and my mom was completely fine. I do not know for sure if the irritated nerve was the actual issue, but the series of events seem to lead to that. I was very thankful for good, knowledgeable, experienced nurses that day!The next intrathecal chemo will happen about 4 - 6 weeks from now. We will have it done at City of Hope for continuity and quality of care.

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!Cancerfree

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.

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!