Quiet, Uneventful

Things have been a bit quiet and uneventful the past week, which is awesome. My mom had regular, twice weekly check-ups at City of Hope and everything looks good. Her complete blood count is acceptable and she feels well. She is still underweight and not eating as she should, but that will slowly get better over time. Here's to more quite, uneventful periods. No infections, no nausea, no danger.

Stent!

The stent outpatient surgery went well today. We left the house at 5:00am to make it to City of Hope by 6:00am.  The whole procedure includes anesthesiology with Dr. Hum and then the cystoscopy and stent replacement with Dr. Yuh.  The actual stent replacement only takes about 15 minutes.  While they were there, the checked out the size of the kidney stones.  She has a 2cm kidney stone that is mainly composed of calcium.  We are not sure the source of the kidney stones, but think they may be a result of the chemo. They will probably need to do an invasive surgery to get it out.  There are different methods to remove stones, but since hers is so large and hard, the surgery will be more involved.  For now, the stent will do and we will revisit the topic in 4 months!

Discharge Day! Day 26 of Transplant!

My mom was discharged from City of Hope on February 25th, 2014 after 26 days since the transplant.  Many people stay longer but the team of doctors decided she is a rockstar and ready to go home.  She still has pneumonia in both lungs, liquid around the lungs, swollen feet (the tissues retain too much water), pain in the abdomen and several other issues, but her white blood cell counts are up and she has been able to eat oatmeal instead of just live off of TPN so she is going home and will coming back 2-3 times a week for out-patient visits.  I initially felt quite apprehensive about her release since she seemed so evidently sick, but she has more comforts at home and has already been able to hold down more solid foods like chao!We had our first outpatient visit back at City of Hope yesterday.  She had some blood work and saw the Nurse Practitioner since her oncologist was out of town.  WBC up to 7, Red Blood cells at 11 (wooo!), and Platelets down a little to 86.  When platelets are down, she bleeds really easily.  Platelets are part of the blood that help the blood clot and thus helps with healing wounds.  The other numbers look great!  Most of the white blood cells are neutrophils, which is great news!In the near future, we still need to try to get rid of the stubborn pneumonia, get the stent taken out, blast out the kidney stones (probably caused from chemo) and figure out treatments for her swollen feet so she doesn't trip so easily when she walks.  A long road ahead, but the road is looking a little more paved at this point.

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

Admission to City of Hope for Transplant

Today is admission day to City of Hope.  The day started out at 8:00am with the third and dose of Palifermin, used to prevent mouth and throat sores from radiation and chemotherapy.  It is a human keratinocyte growth factor that stimulates the growth of cells in the mouth and throat.  At 9:00am, she was admitted to the 6th floor of City of Hope's Hospital.  It's the top floor, or as I like to refer to it:  The Penthouse Suite.  This was quite a different experience from past chemotherapy admissions to the hospital.  In the past, we sometimes waited for 3-4 hours for a bed in the hospital to open before she was admitted.  This time, since she was admitted for a long term stay as a bone marrow patient, they scheduled her for admission immediately after the Palifermin appointment!  I guess bone marrow transplant patients are at the top of the priority queue.City of Hope's rooms at Helford are nice.  My mom's room consisted of two rooms.  The first room is a staging area where visitors can wash their hands, put on masks and hang out.  The second room is the patient's room.  I hung out for the day, took a short nap and chatted with the nurses before heading home for the night.A completely random note:  Duarte, CA was definitely affected by the Southern California fires.  Both the outdoors and indoors of the hospital smelled like smoke.  Evidently, City of Hope's ventilation system was not designed to effectively handle wildfire smoke from the outside.  I brought a portable HEPA purifier for my mom's room to try and help with the smell.  Hopefully they will clear it with their air filtration system soon.

PET Scan - Done!

Mama Pham had a PET scan today at 11:00am. She arrived at City of Hope at 8:30am for preparations for the procedure. To prepare, she was told to eat high protein, low carb foods. Two days before that, she had a kidney stent put in and the urologist told her not to eat high protein foods. It is always interesting to make decisions based on the different recommendations and requirements from different departments! Anyways, she ate the high protein, low carb diet yesterday and stopped eating after 8pm. She was originally scheduled for the PET scan on Friday after the kidney stent procedure. However, she was so exhausted and in pain after the procedure that she went ahead and ate food that the urology nurse gave her. The urology nurse did not know that she had to fast for the PET scan. She was sent home without the scan on Friday since she had food in her system. It turns out it was good that she went home because she couldn't have had the PET scan anyways, due to the Oral Contrast she drank the previous day for a CT scan. To have a PET scan done, patients cannot have oral contrast in their system. There was miscommunication between scheduling and nurses, but it all worked out in the end.When my mom came home from the PET scan, she said it was a little like being in a coffin. They bundled her up and put her in a machine. She also said they "tattooed" her, so I'll have to talk to her doctor and nurse to find out the purpose of these tattoos. She was in high spirits so I guess that's a good sign!Next appointment: Thursday with the oncologist and rheumatologist.

Chemotherapy and Transplant

This post will be a random compilation of stories since I have not posted in awhile.  On Sunday, November 10th, my mom's brother, Cau Thanh, arrived in the United States from Vietnam.  It has been quite the journey to get him here:  Obtaining and FedEx-ing blood samples from Vietnam, HLA-Typing match, letters and documents from City of Hope, VISA application, United States consulate interview and flight to Los Angeles!My mom is now in the hospital for her fourth round of chemotherapy.  She is on the Nelarabine again.  This is the same chemo she had last time.  There are still 10% blasts (bad white blood cells) in her bone marrow after the last round of chemotherapy. Hopefully this round will help get that number lower.  Since they cannot do a typical transplant unless she is in remission with less than 5% blasts, her doctor is now planning to put her through a clinical bone marrow transplant trial that involves both a transplant and radiation.  This is a trial done on patients who do not respond well to their chemotherapy and need the radiation in addition to the transplant.  As of now, this looks like the rough timeline:

  • November 11th: Hospital Inpatient admission for 5 days of Nelarabine chemotherapy
  • November 15th: Discharge
  • November 15th-December 1st: Wait for chemotherapy to finish (about 3 weeks)
  • December 1st-7th:  Prepare for bone marrow transplant.  Mama Pham goes to classes and takes fluid samples for the doctor.  Cau Thanh needs 5 days of Neuopgen  shots to boost his body's ability to make healthy white blood cells.  Cau Thanh also goes through a series of tests to make sure he is healthy and does not have any communicable diseases.
  • mid-December: If all goes well, the radiation + transplant happens
  • mid-December - mid-January:  Mama Pham is hospitalize for 1 month post-transplant.  Her body's defenses are completely wiped and need to slowly build back up
  • mid-January - mid-February:  Mama Pham is home, but most likely bedridden.  She must be closely monitored 24/7 to ensure that all her meds are taken at the right time, her daily needs are taken care of and she eat
  • February onward:  Mama Pham makes visits to the hospital for check up.  A patient is not considered in full remission and cured until 2 years after the transplant.

That is the tentative timeline for now.  Of course anything can change.  We are still waiting on insurance approval for the bone marrow transplant so they haven't been able to start my uncle's full paperwork or officially schedule Mama Pham for any bone marrow transplant preparations.Her spirits are overall well.  Some days are harder than others, but she is mostly cheerful and hopeful.  She has gotten used to the stent that was put in about a month ago to make sure her kidney works correctly to filter all the drugs.  She has a large kidney stone that is currently inoperable due to her weak immune system state.Here's to a successful round of chemo, seamless bone marrow transplant preparation and a successful transplant!

City of Hope Surprise!

This past weekend, Mike, David and I all went to Los Angeles to visit my mom.  She is trying out a new chemo drug, there are many uncertainties and we still had some paper work to take care of for the stem cell transplant donor preparation.  My mom knew Mike and I were coming.  However, she did not know David was coming, too!  He surprised her while she was still at the hospital, and to top it all off, he shaved his head while he was there so they could be bald buddies.  That is such a David Pham move.  Such a class act.  So proud to have him as a little brother. David and Mommy

Nelarabine - a new chemotherapy

We found out October 7th the my mom definitely did not respond to the two cycles of chemotherapy - Hyper CVAD A and Hyper CVAD B.  Dr. Grant Lewis in Savannah initiated her Hyper CVAD treatment.  She continued the 2nd cycle of Hyper CVAD at City of Hope.  Dr. Salhotra told us pretty early in the process that if she does not go into remission with this type of chemo, the he would put her on a more aggressive type.  This more aggress type is called Nelarabine.  Unlike Hyper CVAD which targets a range of Lymphoma and Leukemia, Nelarabine is specific to T-Cell Acute Lymphoblastic Leukemia.  Nelarabine is only prescribed to patients who did not respond to at least two cycles of a different type of chemotherapy. We have about two more weeks until we know the full effects of the drug.  If there are still blasts in her blood and bone marrow, then we must proceed with other options.While we wait for this to take effect, I am working with my uncle in Vietnam to make sure he is ready with a VISA to come to the United States when necessary to be my mom's stem cell donor.  He is a 100% match! Getting a VISA from a country like Vietnam is not easy, so we are hoping for the best with the U.S. Consulate.  At least the government shutdown is over and there is a consultant for him to visit!

PICC Line and Dressing

A PICC line is a Peripherally Inserted Central Catheter. Many chemotherapy patients have a PICC line put into their arm to make it easy to draw blood and give medicine without constantly pricking the patient. It's great. The downsides include living with tubes sticking out of your arm and also the slight risk of infection at home. The PICC line dressing needs to be changed each week. The PICC Line even has its own sterilized cleaning it. It is serious business! There is nothing really holding the PICC line in besides the dressing so it is critical that the dressing is done properly. My mom has had a PICC line in her arm since her first admission into the hospital. They took it out when she left St. Josephs, but put it right back in again at City of Hope. She has never had any issues. This last time, however, she felt some irritation when the nurse cleaned it. The irritation just recently turned into a blister about the size of an inch. The triage nurse on call at City of Hope does not think it is a big deal, but since my mom's white blood counts are dropping and infections are harder to cure, I emailed her doctor to check if we should do something about the blister. We went to a chemotherapy class a few weeks ago at City of Hope and the nurse emphasize that nothing is ever too small for chemo patients, so we are giving everything, even a 1 inch blister, attention!Below is a photo of the PICC line and dressing right after my mom had it put in. They also gave her a waterproof arm cuff to wear in the shower. Apparently some people also take it swimming!IMG_6119IMG_6118

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!cityofhope

California!

So much has happened!  September 3rd, 2013 marks my mom's 25th day in the hospital.  It was also the day of her official discharge!  Once we heard the discharge news, I  booked a flight the next morning to Los Angeles.  I learned something new about last minute flights:  The costs of economy and business elite converge!  Plus, the 8:30am flight from Atlanta to Los Angeles was on their new Boeing 777-200 planes had flat-bed sleeps.  That meant Mama Pham had a very relaxing 4 hour trip from west to east!  Delta and United launched their flat-bed planes very recently for long distance domestic flights, so if you are lucky to be on a flight with those beds, it may be worth upgrading, especially if the price difference is not great.  Everyone on the airport journey was great.  Hanging out with the 8:30am business group, my mom rocked hat, hospital socks and flip flops.  The Delta crew was fantastic and she had a very pleasant trip out west.Our appointment with her new doctor and facility at City of Hope is 11:30 am Pacific on Friday, September 6th!delta-bizelite-1 

Day 20, Labor Day, Release News!

Great news this morning!  The doctor came in with her Complete Blood Count results:

  • White Blood Cell:  5.0
  • Platelets: 117
  • Hemoglobin: 9.2

This means that she can be released tomorrow!  Her counts are up to the levels of a healthy person.  She is right on track with the chemotherapy schedule.  Her counts actually recovered about 2 days early.  Now it is time to transfer to City of Hope for treatment!  More to come soon.  Time to celebrate this first win in the fight against cancer.  Here's to many more victories in the future!

Blood Pressure: Manual vs. Automatic

The automatic blood pressure machine has been giving extremely low readings so one of the nurses brought in an "old school" manual pump.  They blame the inaccuracy on the fact that my mom has a very slim arm and the cuff is too big for her.  My mom's blood pressure reading has ranged from 77/48 to 110/60 in just one sitting, depending on who does the reading and which machine she uses.  This seems quite arbitrary to me.  Though I have always been wary of the nurse squeezing my arm tight with a cuff then relying on her counting to determine my blood pressure.  What if her mind wanders?  What if she blanks out for a few seconds? Does she just make up numbers?   It doesn't help to Google these questions because the internet is full of articles about how most blood pressure readings are wrong, how people's BP spike when medical personnel walk into the room and how cuff sizes really do affect your BP reading.  Thanks, internet.The nurses and techs measure my mom's vitals every 2 hours since at this point of her neutropenic state (<0.4 WBC count), she is at high risk for infection, which can also lead to sepsis.  Indications of sepsis include high fever and low blood pressure.  If her temperature ever reaches 100F, we need to take action! Therefore, she gets a visit from the Patient Care Tech (PCT) every two hours for her temperature and blood pressure readings.  Since she is a neutropenic, they also leave her own machines in the room so they are not shared with everyone else on the hall.  Below are the two machines.  I think they make quite the cute cross generation couple.

IMG_6013Left: Manual Blood Pressure Machine, Right: Automatic Blood Pressure, Oxygen, Temperature Machine

 

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.