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**