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.

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. MommyHealthRecord

Bone Marrow Biopsy and Transfusions!

Today was Bone Marrow Biopsy Day. The biopsy was performed by a nurse practitioner named Rhonda. She was the best biopsy experience that my mom has ever had. Thanks Rhonda!My mom's hemoglobin counts dropped to 7.9, she she got two units of blood. I told her that Lance Armstrong would WILLINGLY get transfusions. So it's a good thing. Not that she's trying to enhance her performance to ride up any mountains anytime soon yet. We're just trying to make it one mile down the street. :)

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! 

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!

Air Leaks are Good!

For the past few days, my mom's trachea has been so swollen that when they deflated the balloon on the ET tube, no air would come through. Today, they were finally able to see some signs of air coming through! This means that the swelling as subsided and hopefully they can extubate her soon!

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.

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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. 

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

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!

Road to Recovery: Less Appointments!

On Monday, August 4th, our oncologist at City of Hope said he only need to come back for visits every two months instead of every month. Today, our oncologist at UCI told us we should only come back every two weeks instead of every week! All this because she is doing well and looking much better. This is a big step forward in the road to recovery and emotional well being. Less hospital visits mean less reminders of illness for my mom! Hooray!

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!

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!