Start time: 11:15am Pacific
End time: 12:50am Pacific
Now, wait time!
First two weeks: Wait for engraftment to happen. Meaning, we wait for the body to accept the stem cells
First month: Monitoring in the hospital
First 100 days: Serious monitoring, but patient allowed to go home
First 2 years: Regular check-ups with hospital. After two years, if all goes well, remission can be declared!
Today is a relaxing, beautiful day. We have had rough moments coming up to today. I am sure there will be rough moments after today. However, today we are basking in the glory and grace of everything in our life, thankful for everything that has gone right up to today, thankful that my uncle’s stem cell harvesting went so well yesterday, thankful that my mom is receiving the stem cells through a fairly painless process and just enjoying this beautiful Transplant Day Zero together here at City of Hope. Sending my love out to all our supporters during this journey.
Day Zero is the terminology used for Transplant Day.
Today was Stem Cell donation day for Cau Thanh, my mom’s brother. We had a fantastic day so I cannot wait to detail it in this post! Some tidbits:
- Stem cell = CD34+ cell
- Stem cell harvesting on the apheresis machine for 360 minutes. This means his blood goes out into a machine, the stem cells are extracted and the blood goes right back into the body.
- About 18L of blood was circulated through the machine. He has 4.5L of blood. That’s 4 times through the machine!
- 360 minutes is the longest amount of time donors are allowed to sit to have their stem cells harvested
- He gave himself Neupogen shots 4 days leading up to the donation day to boost his normal level of 8 billion white blood cells per liter to 60 billion white blood cells per liter. He was at 67 billion when we got to the hospital. Over achiever. 🙂
- They needed 8 million stem cells. My uncle gave 8.74 million! Again, over achiever
- With great foresight, he drank 4 liters of water the previous day so his veins were quite fantastic for the process.
My uncle is quite the man. He is strong mentally, emotionally, physically and spiritually. He had no side effects from the Neupogen and he barely had any side effects from the 6 hours of stem cell harvesting. One of the side effects that most donors get during the 6 hour process is tingling sensations. This is caused by the lack of calcium. What causes the calcium deficit you ask? The anti-coagulant! While filtering the blood for stem cells, they also drip in an anticoagulant that causes the calcium level in the body to go down, which causes tingling. To combat tingling, they can either slow down the process or give calcium supplements. Slowing down the process creates a risk of not harvesting enough stem cells (which obviously was not the problem with my uncle!) so they try not to slow it down too much. They gave my uncle calcium supplements whenever the felt a tingling sensation. He never takes any supplements so he resisted the calcium at first, but I explained that it was OK and if he didn’t take it, he would risk cramping his fingers which would cause an even bigger problem! Eating and drinking sometimes help with the calcium deficit, but since he didn’t want to use the bedside potty, he avoided eating too. I don’t blame him, I would have done it too!
The nurses had so many compliments. Sometimes during the 6 hour process, the patient’s blood slows down and the machines start beeping. This never happened with my uncle. He rhythmically squeeze the stress ball for 6 hours and his blood flowed freely. They gave us a list of foods rich in magnesium, calcium, potassium and iron to help aid recovery, but no recovery was needed for him.
After we wrapped up at the hospital, we went and made sure he had a nice heme-iron-rich rib-eye steak for celebration. Steaks are not common in Vietnam so it’s always a fun treat to have him try new things. Below are several photos from the day.
Since admission day on January 19th, 2014, Mama Pham has had radiation treatments twice a day. Usually around 8am, then back again at 2pm. She hated all 10 of those Intensity Modulated Radiation Therapy appointments. Her last radiation visit was Friday afternoon. On Saturday, they gave her a dose of Etoposide, an anticancer drug with rough side effects. But today is rest day! It falls on a Sunday, on the 7th day of treatment.
Her appetite quickly diminishing, partly due to the side effects and partly due to the fact that she doesn’t like the hospital food. City of Hope has a fairly decent hospital menu, but since the food isn’t typically Vietnamese, my mom has a hard time eating it. Outside food is not allowed unless the patient eats it within one hour of preparation. I have spoken to her doctors and dietician and at one point if she continues eating very little, she may have to put on IV food.
Upcoming important dates:
January 28th: Mama Pham’s Birthday!
January 29th: My uncle’s stem cells get harvested
January 30th: Transplant Day
My uncle attended a class at City of Hope on how to give self-injections at home. He said he practice with a needle and something that sounds like styrofoam. As preparation for donating stem cells, the donor is required to do 5 days of injection of Neupogen. This is the same drug doctors give cancer patients, especially neutropenic patients, to stimulate white blood cell growth. He gives himself shots for 5 days, starting January 25th, 2014, then enters the hospital on January 29th to have his stem cells harvested. More details about that in a different post! In a nutshell, they used to have to take the actual bone marrow for stem cell harvesting. Now they do it with peripheral blood, immediately giving you back your own blood after taking out what they need. Pretty rad, right?
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.
We have an updated stem cell transplant schedule due to insurance approval issues. Hopefully all has been resolved. Below is the updated schedule both for Mama Pham and her brother, Cau Thanh, the donor.
- January 17th: Palifermin 60 micrograms/kg in OPD
- January 18th: Palifermin 60 micrograms/kg in OPD
- January 19th: Palifermin 60 micrograms/kg in OPD; Hospital Admission
- January 20th: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 21st: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 22nd: IMRT x 2 (Intensity Modulated Radiation Therapy
- January 23rd: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 24th: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 25th: Etoposide 60 mg/kg (ADJ BW)
- January 26th: Nothing
- January 27th: Cyclophosphamide 100 mg/kg (IBW)
- January 28th: Start Tacrolimusl Loading dose of Sirolimus
- January 29th: Continue Tacrolimus and Sirolimus maintenance
- January 30th / DAY ZERO: INFUSE FRESH DONOR PBSC
- January 31st: Palifermin 60 micrograms/kg
- February 1st: Palifermin 60 micrograms/kg
- February 20th: CMV qPCR draw every Mon & Thurs; consider PCP Prophylaxis
The day of Stem Cell infusion is called Day Zero.
- January 25th – January 28th: Neupogen shots to stimulate WBC production
- January 29th, 7:30am: Stem Cell Harvesting!
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.