Multiple Blog Updates

Hello Everyone-

So sorry for being M.I.A.!! There will be multiple blog entries posted today. We have been so busy busy busy busy. I go to update the blog, and work on it while at chemo, but the doctors or nurses have questions and I can't complete a thought thinking of all these things floating in my mind let alone form a comprehensive sentence for you to understand. Than coming home after sitting in LA traffic for hours, you come to find even the happiest of people like myself it takes a toll. LOL!  So I dedicated today to just updating all you our friends and family with what has been going on. There will be multiple posts today, so beware of  three month flood of updates headed your way, thank you for being so patient with us. We love you...

Hugs-




 I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.

~Mother Teresa

In Limbo

Hello Everyone-

We've been caught in a dance of yes surgery, no surgery, yes radiation, no radiation.  Which is very frustrating for us, so not hearing a solid plan we didn't want to just push ahead and update until all of the options had been weighed and researched.

We saw Dr. Chawla after the radiation appointments he talked with ALL doctors, Moms urologist, radiologist, and surgeon all spoke with Chawla. The plan for the time being is he told us to do more chemotherapy for three more rounds to see if this medication mix of GAT (gemcitabine, adriamycin, and taxotere) could do more good. Until the next set of scans it's the same song and dance of chemo, mom feeling extremely tired after part a is administered  on day 2 and 3, 4, coming back to her self day 5 and 6 than part b of the medication and the week starts over again. I see her getting very tired, and frustrated with her body not being at 100%. But the constant prayers and warm positive energy sent her way keeps her going, so thank you so very much.

Love-  

Radiation Consults

Hello All-

We were sent to radiation after all these surgery consults were pointing to that direction. Surgery was put on hold to see what the radiation specialists had to say. We saw two Radiology Oncologist. One was a doctor in our town (Dr. Washington), who for being a small town were blessed with a big city credential doctor right under our noses, it was a blessing. The other doctor (Dr. Koka) we saw was a recommendation of Dr. Chawla. Both doctors had the same response, and their response is as follows...

Due to the location of Mama Pham's tumor that tricky bugger is near all these sensitive areas. SO the conversation becomes a matter of quality of life or quantity of life. Because of where the mass sits right in front of the ureter and near the ever moving bowels, there is no guarantee of a "direct clean" shot of radiation to the mass without hitting surrounding organs both radiologist said the same thing. The way they explained radiation there is a beam that is shot at that location with guided markers put in surgically before you begin radiation, and you can see it on the x-ray type machine while you radiate the mass. The level you need to reach in order to kill the sarcoma soft tissue is at a 64.  The ureter and bowels however can handle at the highest a 45. IF they are exposed to a stronger dose they become damaged, grow scar tissue, and more dangerously create holes in the organs. The holes can lead to permanent colostomy and nephrostromy bag, the scarier part is it could not have any symptoms and there could be a leak, that causes all other organs to shut down from the bacteria in the system. Both radiologist recommend we have surgery to remove that one leftover spot. So we left both appointments completely and utterly confused. It is back to the drawing board, and a follow up with our ships captain Dr. Chawla. 

We will update soon-

Surgery Consults

Hello All,

Back from our road trip to San Francisco! It was a long drive, but well worth the trip. 

On our way to SF we met again with Dr. Eilber in LA his recommendation is for radiation, no surgery for the time being, to reassess after we have had three months of radiation. The last time we met with him he was also very quick, direct and to the point. After his appointment we drove directly up to SF to see Dr. Chan. 

We had one day in between to rest up, and enjoy some of the beaufitful sights. Most of you know SF is our home away from home, but mom hasn't been back since '98, so it was fun taking her to our favorite eateries.  Snacking, feasting, and relaxing  is what we did!! We saw our dear Camp Phamily for dinner and rested up for the big day ahead. 

Dr. Chans appointment went well. We really were searching for a third opinion to balance out the information we've already received from the two surgeons we spoke to from the prior scans. Dr. Chan has been on our radar but everytime it was time to leave to see him we would start chemo again and each appointment would become a theoretical appointment.  So we knew we needed to see him this time around, it was SF or bust! But we were very happy we did. He gave us options, A-G, he also from his stand point thinks we should not do surgery at this point. Since moms cancer is so rare there is not enough information on how to treat her. He believes we should find a treatment that will be specialized towards mom as opposed to trying to fit her into a  "close enough" category. 

His plan:

-Moms genome work up see how she responds to the chemos.

-Mix some new chemo with ones she's never been.

-Radiation, he said makes the most sense since she only has a small mass left, why keep putting so much toxic meds into her for such a small lesion. 

-Adding hormone therapy to her treatment. 

Most importantly, was he sat with us for an hour and answered all of moms questions. From my stand point, she seemed at ease with him. But ultimately as long as moms happy with her choice, we've taken her to two of the three doctors on our top CA list both brilliant, doctors. 

Next up we have a follow up with Chawla, to see what he says with both Doctors sending their opinions.  We will be sure to update once we have a game plan! :-)

Have a great week!!

Hugs-

PET/CT today

Today Mama Pham is getting her PET/CT scan done today. We will be sure to fill everyone one in once we get the results.

Hugs-

GAT round 2 complete

Hello All,

Just a quick update.

We just wrapped up with round two yesterday of the GAT.

Apart from being pretty exhausted, a little nauseous this time around, and having this itchy feeling from inside, Mama Pham is doing well.

The next step, is we will go and seek some surgical consults to look at Moms case again.

We will be following up with Dr. Fritz Eilber (https://www.uclahealth.org/provider/frederick-christian-eilber-md) we met previously at UCLA, as well as meeting Dr. John Chan (http://profiles.ucsf.edu/john.k.chan#toc-id1) who is at Sutter Health, and UCSF, and we are hoping to also see Dr.Vijay Khatri (http://www.ucdmc.ucdavis.edu/publish/providerbio/search/548) at UC Davis. After we find a surgeon, and get a rounded out look as to what our next steps will be, if Mom is at a good place to have surgery and so forth.

We have a PET/CT scan scheduled for the two weeks from now, and will bring updated scans to see all the doctors. Now we enter the waiting game. As soon as we receive results from the scans in a couple weeks we will be sure to update everyone.

As always thank you for all the love, prayers, and positive energy being sent out way. We love you.

HUGS-  

How to give a Leukine shot

The new medication mom will be taking for low white blood counts is called Leukine it is administered daily until she receives her 2nd part of the GAT it is used to keep her counts up so she can continue her cycle.  It's the same family as the Neulasta shot she usually gets after finishing her chemotherapy.

The supplies needed:

They should be provided to you from the doctor or pharmacy. If you don't have access to gloves, make sure to wash your hands thoroughly as the risk of infection in a person with a low immune system is very high. 

Two gloves, Two alcohol wipes, Two vials of Leukine, Bacteriostatic water, Syringe, Two needles different sizes (YELLOW 20G, and BLUE 25G), and Band-aid (not photographed)

Instructions for preparing medication:

 -Start with washing your hands thoroughly, and the area you are about to prepare the shot.

- I put down a nice block of saran wrap down because after you are finish preparing the shot you just wrap everything (but the needles, they need to be disposed of in specified sharps container also provided by doctor or pharmacy) and throw the whole set up away. Easy clean up! :)

-Once set up, with all of your needed necessities. Directions below...

- Apply Gloves

-Open the lids of the Leukine Vials

-Alcohol Swab the tops of the Leukine vials, and the Bacteriostatic Water

- Open the syringe (try to limit the amount of time the open tip is exposed to the air)

-Put the YELLOW (20g ) needle on the syringe immediately after opening

-Pull 2ML of capped air into the syringe

-Push that 2ML of air into the  Bacteriostatic Water

-Pull 2ML of that  Bacteriostatic Water into the syringe

-Insert 1ML into each Leukine Vial

-Cap the needle, set aside

-Pick up the two Leukine vials with liquid inside, rotate hands gently at the wrist, until all powder is dissolved.

-Pick up syringe, and uncap the needle, empty the two vials into the syringe, making sure you have the last drop, and look on the side of the bottle to see if you get the last drops.

-Cap the Yellow needle

-Take Yellow needle off

- Put the BLUE (25g ) needle on the syringe immediately after taking the yellow one off

-Flick the middle to bottom of the syringe to make sure all bubble have floated to the top

-Push medication up until ONE tiny water bubble has come out

-Set syringe down

Instructions for giving the injection:

- Wipe the persons left or right arm with a new alcohol wipe (make sure to keep track what arm you put into, it's best to switch arms daily, there will be a little welt, make sure to massage a little after to prevent the welt and bruise)

- Use the back of the arm fat to inject, there will be less pain

-Pinch the skin

-Insert the needle all the way to the base

-Slowly inject medication (it hurts less the slowly you go)

-Once all mediation has been administered pull needle out

-Wipe with alcohol wipe (usually a little medication or blood after injection)

-Apply band-aid

-Gently massage the injection site to prevent bruises or welts

-Kisses make it better <3

I have a video I will try to edit and update later. Joelson my helper is calling Grandma the whole video to come get her shot! :-)

**UPDATE**

GAT round 1 complete

Happy (Vietnamese) New Year!!! We hope the year brings all of you health, joy, prosperity, and good fortune!

Mom has completed a whole cycle of the GAT ( Gemcitabine, Adriamycin Taxotere)!! Hard to believe a month passed by so quickly...

She was able to tolerate the new medication. She was a little nervous at first, but once she had her first dose she in true mama Pham fashion, rallied through all the while with a smile on her face. The first week on the medication she had lots of bone pain, and was extremely tired.  She started taking vitamins b6 and b12 this time around. The two vitamins help with the neuropathy issues associated with the Taxotere. Other than her white blood count dropping down very low (courtesy of the Gemcitabine) after the first round. We went for our second infusion and almost had to delay a week since the counts were too low for chemo. Being the first time using Leukine the new blood cell booster medication and jumping through the insurance hoops. We were unable to get it approved within the day so, the doctors thought it best we give her a weaker dose of the GAT and send her home with the usual Neulasta. Neulasta can only be given once you complete the chemo cycle, because it is counter intuitive to boost up the WBC and tearing it down at the same time with chemotherapy. Other than that the cycle went by seemingly well.

Two week break time, until next time...

HUGS-

Next phase

We just received the results from the latest CT scan and the results are good! The cancer has shrunk by 50% again! Mama Pham is truly kicking cancer's butt! Since the cancer continues to respond to the Chemo Ifex (ifosfamide) the doctors have decided to see if we can continue to shrink the cancers using a new kind of chemo making surgery easier with a greater expected success rate.  The doctors also want to make sure that the cancer is in fact dead and not just dormant from these strong medicines, so they are using all the tools in the medicine cabinet to attack the "roots" of the tumor.

At this point we have to stop her current chemo regimen because at a certain point the chemo becomes toxic outweighing the benefits.  This particular Ifex has been shown to cause major bone damage after the 6th round due to the rapid creation of white blood cells- and she is now at that point. So starting next week we will be switching to the GAT chemo ( gemcitabine, adriamycin & taxotere).  When I get more information about the medications I will share it in future post.  The new routine will be 3 weeks on 1 week off.

As Mama Pham prepares for this next phase of battle she has decided that she would like to finally shave the rest of her hair and become the official Cancer Warrior! 

Phamily weekend retreat

Last weekend we were blessed to be able to enjoy some wholesome Phamily fun. What a way to kick off 2015!! :-)

We surprised mom and dad with a 32nd wedding anniversary trip to Lake Tahoe! (But the best part of the surprise was that all of us were coming along for the long weekend!)  We rented a cabin, played board games, admired the little snow there was, enjoyed sightseeing, made yummy meals, roasted s'mores and even held the first annual Phamily talent show! Joelson & Grandpa Matt played in the snow as Grandma (Mama Pham) watched happily while the rest of us kids went snowboarding. We went tubing for the first time too, it was lots of fun! Mama Pham got to see the Squaw Olympic Village and enjoyed hot tea while watching her minions play. Everyone had so much fun & Mama Pham was so relaxed that she didn't want to go back to the real world. We've made a new resolution that we are going to try to vacation together more often! Now we are starting to plan our next trip!

Happy Anniversary!

Squaw Village.

Gondola to the Ritz.

Tubing races!

Northstar Villiage, shutting down the place.

Sleepy travelers.

Successful snowboarding day. :-)

Breathtaking.

Admiring the gorgeous views of the lake.

Lounging around the cabin.

Sharing bedtime laughs.

Cuddle buddies! ☺️

Walking around the hotel village.

Snowboarding day.

S'more night... Yum!

No snow! View from the balcony.

We Wish You A Merry Christmas... and a Happy New Year!

Today marks the beginning of a new year. As we reflect upon the wild year we’ve made through, there were very humbling experiences, and countless things to be thankful for.

First and foremost all of our family and friends who have been following our journey, continuing to pray for our Phamily, always keeping us in your thoughts and sending all of your love our way. We honestly could not have made it through without all of you. We thank you for your unwavering friendship, constant prayers, and unconditional love. All of the beautiful cards, letters, emails, texts, and phone calls are very deeply appreciated and cherished.  

We hope you all had a wonderful and joyful Christmas spent with all of your loved ones! We had a pretty busy holiday season, but we were able to sneak in some very quiet relaxing days. That’s exactly what we needed to recharge us for the New Year. We are back on the chemo cycle, we’re so sorry for not updating as often as we were supposed to. ((Opps, that is entirely my fault! :-))

We wish each and every one of you and your family a Happy New Year, filled with everlasting JOY, deep LOVE, great HEALTH, and LAUGHTER. May 2015 bring you many lasting memories to be made, fresh starts, and plenty of adventures!

Love and Hugs,

Xoxo The Phamily

P.S. There was snowfall for the second time in our entire lives here in Southern California, and it was beautiful white New Years Eve! :-)