Dr. Chawla - The Sarcoma Hero

Everything happens for a reason, we were lucky enough to get an appointment with a sarcoma specialist at Stanford University last week- even before we knew the prognosis. Now with the new info, we are so thankful that we had an insurance approved second opinion.

After the Monday appointment, my mom's adopted blond daughter/guardian angel was able to get us a last min appointment at the Santa Monica Sarcoma Clinic. The game plan was to stop by the UCLA area on Wednesday on the way up to the Thursday Stanford second opinion.

We walk into this small office building into a nice humble clinic. There we meet the world renowned Dr. Sant Chawla, a sarcoma hero.  He has dedicated over the last thirty years of his career to only fighting and beating sarcoma cancers. Here they do industry standard setting research that literally had changed the game. For the first time in months, Mama Phama had a sense of calmness in her face as she listened to Dr. Chawla explain the cancer, how to fight it and what the clinic was planning to do.

He was so efficient that during our consult he was able call his buddy up at Stanford, save us a drive as they hashed out the best plan to treat this mean cancer. Once they agreed on the course of action they also agreed to change the name of her cancer. They think she has Endometrial Stromal Sarcoma, rather than the Undifferentiated type and will treat her as such. Still it makes it very very very rare, mean, aggressive and fast growing.

It was also realized that, the surgery was what made this cancer spread and grow faster "upstaging" her to a very urgent case.

The game plan is to start the clinical trial of chemo therapy asap as that will be her best chance of survival.

Info about Dr. Chawla: http://sarcomaoncology.com/s_MeetourDoctors.html

High Grade, Aggressive, Undifferentiated Stromal Cell Uterine SARCOMA

The worst combination of words to say to any Oncologist. From what we have learned in the past few days, Mama Pham has a life threatening cancer that is so uncommon most cancer doctors will never meet a patient with this condition in their entire medical career.

The type of Cancer that Mama Pham has is so rare that when researching it, the cancer is not even listed on the American Cancer Society website. According to our world renowned Sarcoma Specialist Oncologist, less than a hand full of cases are diagnosed a year -GLOBALLY! Mama Pham hit the jackpot on this one, its just too bad this is not the kind of jackpot that you would want to win.

When he sat down to explain to us what Mama Pham had, he said this...
Of all the cancers in the world, Sarcoma makes up less than 1%.
From the Sarcoma population, around 10-15% are in the abdomen and originate in the female reproductive system.
From that tiny population, less than 1% have the classification that Mama Pham has.
Bottom line- there have not been enough patients to test the different drugs on. No one has mastered treating this.

The problem is that the cancer is incredibly aggressive and grows exponentially from one single cell. The bigger problem is that the period at the end of this sentence has more than 1 million active sarcoma cells.  So when the surgery occurred, the small trace amounts left behind have now invaded and taken over most of Mama Pham's body.

Mama Pham experienced what doctors call upstaging meaning she went from a less than a "stage 1" to past "stage 4" cancer in less than two weeks. So as you can see time is of the essence. Our best bet is to "blast" her system and the cells asap!

Our prayers are now "Please let this Chemo regime slow down the growth if not stop it's growth all together."

The prognosis...

Monday, July 28, 2014
We met with the Hematology Oncologist. She is a general cancer doctor who specializes in Chemo treatments. The appointment did not go well. We learned that cancer is very rare and that there is no standard of treatment at the hospital we are approved to go to and that no one in the hospital had experience with this type of cancer. She was very nice and offered to do some more research, but that the prognosis was not good. She confirmed that Mama Pham was now "metastatic" which means the cancer has spread into multiple organs and she is past stage 4.

As we left that day, we knew our lives would never be the same again. We are now in the fight of our lives, as we need to fight for Mama Phams life. That night we had a Phamily meeting, divided up jobs and in true Pham Family fashion came up with a plan to beat this.  ALL of the odds are stacked up against us, the odds are low but if anyone can beat the odds at come out top of the class it is going to be Mama Kim Pham.

Please help pray for Mama Pham, us, the doctors and the medicines to work. It is going to be a long, scary journey and I promise to update you all as we go.

A life changing week.

If you are reading this then you are in as much shock as our Phamily is. This time last week I was going about my daily life complaining the excessive amount of laundry that had accumulated from our summer vacation. This week, I sit here after a whirlwind week trying to capture the life changing series of events that have occurred.

Mama Kim Pham, Papa Matt Pham and Grandbaby Joelson

Celebrating her second Mother's Day as a Grandma.

(May 2014)

This picture was taken a few days before my mom's life would change forever. We are choosing to share our story for several reasons, 1- to keep our friends and family updated as we embark on the fight of a lifetime 2- to hopefully prevent another family from having to experience this unfortunate series of events and 3- become a online resource for others in the future who will also have to experience our journey.

After the winter season holidays this year, Mama Pham was already not feeling quite like herself.  She just simply thought that she over did the celebrations and with chasing the new grandson around that she was just tired. By the early spring she was experiencing quite a bit of discomfort in her abdomen. After experiencing some spotting and more pain our dad was able to convince her to go have it checked out at urgent care. From there the doctor noted that her uterus was quite stiff and then referred her to see her OB/Gyn. 

Weeks went by as the new ObamaCare insurance changes were going into effect in California and she was finally able to get an appointment with her new HMO doctor. He then performed a ultrasound and thought that there might be a large fibroid growing. Since she had already been in menopause they recommended a hysterectomy and referred her to a OB/Gyn Oncology Surgeon. They then ordered the first and only CT (CAT Scan) before surgery. At this point there was no indication of any cancer, just happened to be that the best surgeon on the team was a surgical oncologist. When he then took over the case, her uterus had grown and hardened even more. So they thought the fibroid had simply died, and was starting to decompose.  By the time the insurance company had approved the surgery, her abdomen had grown to the size of a 6 month pregnant lady and she was in a considerable amount of pain. The uterus had also become so stiff, enlarged and ridged that the doctor was starting to suspect cancer.  He decided then that a vertical incision would be the best plan of action to give him the best view of the area just in case it was cancer then he would be able to cut it all out. So May 22, 2014 she headed into surgery for a complete radical hysterectomy. 

After a long and according to the surgeon "successful" surgery Mama Pham remained hospitalized for six days as she began to recover.  She was a total trooper, quickly weaned off all pain meds and was up and walking by the third day.The first few weeks were uneventful, she was tired, uncomfortable, pale and weak but we all wrote it off as her recovering from a major surgery. By the 5 week post surgery mark, her wound still had not healed well and she was still not herself and now she was complaining about even more pain but now on her lefts and right sides. The surgeon said that it was because now that she has been diagnosed with cancer that every ache and pain was creating symptoms.

Finally, the pathology report comes in and it turns out that the original pathology report was "inconclusive" and so the hospital sent her biopsies to Stanford for a second opinion. The surgeon calls us, tells us not to worry, the cancer was bad but he got it all in surgery so it's the "best case scenario" for what could have been such a bad thing. Still he would not share what classification they found.  He then has her do a standard follow up CT on Friday and we are scheduled to see him on the following Tuesday for the 6 week post opp follow up. 

So on 7/7/14 we casually come into the office for him to check on Mama Pham. There he basically reassures her that everything she is feeling is "normal" and if she is still having weird pains in the abdomen to go see her family doctor because "that area has nothing to do with him". He then examines the sutures and said that there is an egg sized granuloma or as he explained scar tissue that had built up around the closing suture.  It was not "infected" and that to the untrained eye including all family practice or urgent care doctors would not know what it was- SO don't go to them and stop complaining because this is just how this area heals. His directions were if in a few weeks she was still in a lot of pain, and it worsens to then return and he would go in and drain the surrounding fluid so that she wound will finally heal. The doctor then begins to explain that they did in fact find cancer in the uterus and that she was one of the lucky ones because he got it all and that it was all contained within the walls of the uterus.  He said that the results of the CT scan were clear, they did find two BB pellet sized spots in her lungs but not to worry because we don't know how long they have been there and that we will just monitor them every three months with follow up CT scans for a year or two to make sure nothing grows. So we continue to have to ask him questions and finally he discloses a name and says that the classification was what they would call a "high grade undifferentiated sarcoma".  When I asked what stage he says it doesn't work that way but if he had to stage it he would call it a "stage 1" He goes on to say they are rare but again, she is lucky since he was able to get it all out. The doctor then proceeds to look at Mama Pham and says "now stop babying your wound, get back to normal life and get ready return to work." 

Another week goes by, and the "Granuloma" spot still isn't getting better, the stomach pains are getting worse and Mama Pham tells us to hurry up and schedule an appointment so he can fix her wound so that it can hurry up and heal so she can go back to work in two weeks when her disability time runs out. No big deal, on Monday 7/21 she goes in for an outpatient procedure in the morning to have a "wound vac" placed to help the wound heal faster and it should take about a week or two for this new spot to heal. Her 9AM appointment gets bumped to 7PM so at this point she hadn't eaten in 24 hours and the procedure is finally completed around 9PM.  She did have a low grade fever, nauseated and was still in a lot of pain so the doctor decided since we lived over an hour drive away from the hospital that he would just admit her for the night for peace of mind and since she's there already he would do another CT scan in the morning to see if he could find her source of pain.    

Tuesday morning, 7/22 was a confusing crazy morning. The orders where changing every hour to the point where the nurses could not keep up. They performed the CT first thing in the morning, and by 10am it was discovered that there was an issue where she could not empty her right kidney which was causing her the pain, so they would put a tube in to drain it and this might have been a complication from the original surgery, so they will keep her another night.  By 1pm, the kidney tube is canceled until tomorrow because her blood work came back good and it was no longer an urgent matter. 

Wednesday morning, 7/23 they decided that they are going to send her home because she is such a "low priority" that she will have to come back the following week as an outpatient to have the kidney tube placed.  When we asked why, the Physician's Assistant responded that they have the results of the CT now and that it looks like the cancer had regrown and it was blocking the Ureter, whether they placed the tube immediately or in a few days did not make a difference. She then stated that their office would no longer be carrying Mama Pham's case and that on Monday she would schedule us an appointment with a "general" oncologist because now Mama Pham had CANCER and that it was not in an area that they work with. 

We then waited for the discharge instructions and for the Physical Therapist who would be changing out the dressings for the wound vac. When they arrived and assessed the situation we were sent home with MONTHS worth of supplies and a telephone number to call and set up home health nurses to come keep up the wound care. This was the official start to the many tubes and catheters and ports that would now become a permanent part of Mama Pham's daily life. This super active grandma known for her hugs currently winces at the thought of being touched. 

When we left the hospital that day, we thought this was as bad as it was going to be. We are the Pham Family, affectionately known as the "Phamily" who can handle it all with Mama Pham as the Captain. She would be out of commission for a few more weeks we thought but then she'd go back to being Mom and all of us kids would go back to our lives.  We were so wrong...