Category: Support

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!

MommyMe

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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!

Ocean Therapy

After spending most of our time just driving between home and the hospital, I decided it was time for some ocean therapy on a beautiful day. Completely covered from head to toe, sunblock on any exposed skin and sporting a mask, we went to Corona del Mar and took a little stroll down the empty tree-lined streets and along the cliff side.

Beach

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

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!

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Sally the Adventure Dog

Sally flew to California to live with my aunt a few weeks before my mom was discharged.  When we arrived Wednesday, we were excited to be greeted by Sally.  However, when we arrived, we realized that right after taking a bath and not having a collar, Sally decided to sneak out and go on a tour of her new California neighborhood!  Maybe she’s having a mid-life crisis.  Since pets are known to leave their new homes for their old homes, we were a little concerned.  We checked local shelters and put up signs.  The next morning, a neighbor called and said he picked her up after he saw her crossing the street, braving the traffic and hanging out at a house that wasn’t hers.   Turns out she just felt like going on a little unannounced adventure.

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Google Hangout! Across generations and Across the World!

Yesterday, in an ongoing effort to find ways to keep my mom’s spirits high, I emailed all the cousins to try and set up a Google Hangout with some of our relatives around the world.  We set up a Hangout for August 25th, 2013 4:30PT/6:30Central/7:30pmET/6:30am ICT.  My Grandma has 10 living children and probably more than 80+ grandkids and great grandkids.  Once the word got out that we wanted to do a Hangout, everyone wanted to join. The call lasted more than 2.5 hours and despite our hospital door being closed and pretty sound proof, I bet the nurses were wondering why they kept hearing a chorus of Vietnamese people yelling from our room.  If you have never used Google Hangout, one cool feature is that it recognizes who is talking and highlights their face on the center screen.  This probably works amazingly well with normal people.  With a group of Vietnamese aunts and uncles who are all happily and excitedly yelling, it was quite hilarious to see Google Hangout try and keep up with us.  

Below is an awesome photo my brother snapped of what happened.  He also wrote a little blurb about our grandma.

Grandma Pham:
-4’8″ Vietnamese lady
-1945: Survived Japanese oppression in Vietnam
-1975: Survived the Vietnam War
-Somewhere in between had 13 kids, 3 of which suffered sudden infant death syndrome.
-5 of which successfully became refugees and escaped to ‘Murica.
-Has 70+ kids and grandkids (prob 80+ whose counting)
-2013: Uses Google Hangout with headphones to talk to all 5 kids and the grandkids in the states.

GoogleHangout

It is Summer. Less Hair is Better!

The oncologist is certain that my mom will lose her hair around day 10-14 of the hyper-CVAD treatment.  I have scourged the internet for ways to deal with hair loss, types of wigs and types of head coverings.  My mom and I have talked about this and we will probably cut her hair short before all this happens.  We may consider shaving, but have not had that discussion yet.  The internet is filled with opinions ranging from shaving it all off to leaving it long and letting it fall out at will.

To prepare, I have ordered two beautiful hats that will cover her head.   I have also visited the local Savannah American Cancer Society for support and they gave me a free wig for my mom!  The National American Cancer Society receives wigs from Pantene (the hair products company) and sends them to the local chapters.  It really was a joy to visit the local Savannah American Cancer Society, discuss hair loss and bring home a beautiful wig for my mom.  Thanks, Pantene!  We may also buy wigs one day and have them styled, but for now, it was a huge blessing to have a place to go that understands cancer and was able to empathize while I showed them photos of my mom and we picked a wig together since my mom could not physically be there.  She has said multiple times she doesn’t think she will need a wig and a hat will be fine, but it is better to stay prepared in case she changes her mind.  I have never gone through hair loss so I have no idea how that can feel.

Pictures soon to come.

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.