The Comforts of Sleeping on a Cot

I spend most of my days and each night with my mom at St. Joseph’s.  One of the night nurses found me a cot on my first night here.  It is quite comfortable!  During the 4 days of chemo drugs, the nurses came in every 2 hours or so throughout the night to check on the IV, check my mom’s pressure and occasionally give pills.  The chemo drugs are over with for now, so we get most of the night uninterrupted with the occasional blood pressure, oxygen and temperature check.  Woo Hoo!

Please don’t judge my unmade bed:

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Below is the beeping culprit that would beep throughout the night.  It is now unplugged!  It beeps each time there is an air bubble or the liquids need replacing.

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Leukine and White Blood Cell (WBC) Counts

My mom came to St. Joseph’s Hospital on Friday, August 10th with a crazy high white blood cell count of 90.0 x 10^9 WBCs/liter. Normal amounts for men and non-pregnant women women ranges from 4.5 – 10.0 x 10^9 WBCs/liter.  After transfusions and treatment, they were able to bring the WBC count down to normal levels.  As her chemotherapy hyper-CVAD drugs take effect, her WBC count has slowly dropped.  Right now, it is at 1.2 x 10^9 WBCs/liter.  She is classified as neutropenic and put on a neutropenic diet where she avoids anything fresh that can potentially bring increase infection.  During this period, it is critical that she does not get sick since it is more difficult for her body to ward off infection with such a low WBC count.  She has already had most of her chemo drugs for this first cycle of hyper-CVAD and now is the waiting period for the drug to wipe out the bad WBCs and wait for the body to rebuild the good WBCs.  To help with rebuilding, Dr. Lewis has prescribed injections of Leukine into the stomach.

Leukine is the trade name for Sargramostim.  According to Wikipedia recombinant granulocyte macrophage colony-stimulating factor (GM-CSF) that functions as an immunostimulator.  Yes.  Let’s try the description from Leukine.com:

Leukine is used to help the number and function of white blood cells after bone marrow transplantation, in cases of bone marrow transplantation failure or engraftment delay, before and after peripheral blood stem cell transplantation, and following induction chemotherapy in older patients

Basically, it is a drug to help the little white blood cell army rebuild its force.

City of Hope and National Comprehensive Cancer Network (NCCN)

Recently, I learned about City of Hope and the National Comprehensive Cancer Network (NCCN) on two independent occasions.  My cousin told me about an acquaintance who has been successfully treated at City of Hope.  She spoke highly of the CIty of Hope Medical Center.  The next day, one of my good friends (Dr. Todd Jones!) stopped by Savannah after he heard about my mom’s diagnosis to chat with me about resources.  He asked me if I had heard of NCCN.  NCCN is an alliance of 23 of the world’s leading cancer centers.  It provides a plethora of information and contains the latest research and studies.  Todd told the NCCN site is where many oncologists will stop for resources.  It is self described as “Your Best Resources in the Fight Against Cancer.” As it turns out, City of Hope is one of the 23 medical centers part of NCCN.

City of Hope is “recognized worldwide for its compassionate patient care, innovative science and translational research, which rapidly turns laboratory breakthroughs into promising new therapies.”  It is currently ranked as the 15th best cancer hospital in the nation, with an entire group devoted to Leukemia.  It is a 30 mile, 45 minute drive from my aunts home in Orange County, California.

Dr. Lewis and I briefly talked about City of Hope this morning.  He will do more research and recommend a good transfer site and doctor for us.  We trust his judgement and expertise.  As my mom says (translated): “He has such a kind soul.  I feel better each time he stops by each morning.”  Until any relocation happens, her white blood cell (WBC) count needs to reach above 5 * 10^9 WBCs per liter.  It is currently at 1.2 * 10^9 WBC per liter.  From my understanding, when she was admitted, her WBC count was at 90!  From what I have read (need to further verify with doc), the normal range is 4.5 – 10.0 WBC/liter!

Right now, we are rallying for the bad mutated, cancerous, “terrorist”, evil WBCs to go away with the chemotherapy drug and for the good WBCs to steadily rise.  With our powers combined, we will find the next best point of care location for Mama Pham!

Hyper-CVAD

On August 14th, 2013, I talked to our oncologist and he told me he wanted to immediately put her on the Hyper-CVAD chemotherapy treatment for her T-Cell Acute Lymphoblastic Leukemia.  Our original plan was to fly her to California immediately to start treatment closer to family.  However, the oncologist could not in good conscience sent her across the country without starting treatment.  The cancer was quite progressive.  Therefore, my mom and I both decided it was best for her to start her first cycle in Savannah, Georgia under the care of Dr. Grant Lewis from Summit Cancer Care.

(Note: I will be writing a summary now and update this post with more detail later)

Hyper-CVAD includes 6-8 cycles of chemotherapy.  Each cycle lasts about three weeks, with a three week break between cycles.  The bulk of the chemotherapy drugs are giving 3-4 days at the beginning of the cycle.  Mama Pham got them orally and intravenously (IV).  There were many warned side effects, but she has not had any of them.  Here is the list of chemotherapy drugs she has received in the past 4 days:

  • Cyclophosphamide (Cytoxan), by IV Q12hours over 3 hours (6 doses) Days 1, 2, and 3
  • Vincristine (Oncovin) by IV,  Days 4 and 11
  • Doxorubicin (Adriamycin), an antibiotic with anti-tumour effects, by IV, Day 4
  • Dexamethasone, by IV, 1 to 4 Days 11-14
  • Mesna, by IV, to reduce side effects of the other drugs, Need to look up when this was administered.  I think it was administered over the 4 days throughout the day.

Side Effects

  • (Side effects to be added soon)

Mama Pham has had very little side effects so far.  We are on Day 5.  As the oncologist says, “Boring is good.”  So let the boredom begin for the next 2.5 weeks!

Treatment and Family

My mom currently lives in Savannah, Georgia, far from any close relatives.  Mike and I just moved to California and my brother David, a Captain in the United States Marine Corps, will be deployed soon.  Although I have been fortunate enough to have life align in such a way that I can take time to fully devote to my mom in Savannah, this is not a sustainable model.  After her first necessary cycle of Hyper-CVAD chemotherapy here in Savannah, Georgia at St. Joseph’s Hospital under the care of Summit Cancer Care’s doctors, we transfer her to Southern California where my mom can be near family and continue treatment there.  There are many great Leukemia cancer centers like UCLA and City of Hope in the Southern California region.  We will have discussions with our doctor to determine the best location of care for her – proximity to family and quality of care.

Our family and friends far and near have been incredible pillars of support.  I don’t know what we would have done without everyone.