Meet Mama Kim Pham, the Cancer Warrior

Well... her hair is just about gone.. Mama Pham is looking good and feeling good. This super strong Mama bear is determined to beat cancer!!! She says happy Friday everyone, enjoy the long weekend with your loved ones and thank you for the continued support and prayers. Mama Pham says she misses everyone and can't wait to get out of isolation so everyone can come visit. We are looking foward to a quiet weekend with a back yard bbq and lots of movies. Chemo starts again next week.

During the two week break...

Hello Everyone!

We are now on day eight of our fourteen day break between the chemotherapy cycles. As expected our friend nausea came and left swiftly and the medications worked beautifully.  For nausea the Sancuso Patch was a HUGE life saver, but when insurance hadn't approved the 7 day patch we were relying on Compazine and Zofran. The Zofran is stronger and worked so much better than the Compazine, but what the doctor told us, was to use them intermittently and it worked fabulously... once they kicked in! :-) Now mom is able to eat almost everything, but her old favorite comfort foods from when she was younger seem to be hitting the spot.

When we started the chemotherapy Dr. Chawla said, “There are two things I can guarantee:  1. You will lose your hair in two weeks and 2. It will all come back… Now what color would you like?” Right on schedule, exactly two weeks from when we started chemotherapy Mamas hair started to fall out in tiny bunches, not on day thirteen but exactly on day fourteen.

We have had a busy start to our “break” week. It started with us going to get a blood transfusion on Monday. Then we met and saw a Urologist to see if the stent that was placed by Dr. Varney is still working properly and it is working successfully.  So we went down the following day and mom was able to get her nephrostromy tube removed. Huzzah!! Now we are down to just the wound vac which is still being changed three times a week. The opening the wound vac is closing seems to be healing nicely we have a specialist group coming in on Friday to take a look, we will see then how much longer we will need the vac for.

It was the weekend before we knew it, and a good time is what we had. Everyone came pouring through the door and we had a massive ‘Phamily’ slumber party. Even little Joelson was there to enjoy the festivities, he even stayed up later than Aunty Megan, but that’s expected of everyone, she’s the weakest link. :-). We watched Chef and Tammy both movies were great; however don’t watch Chef on an empty stomach! But seeing the joy the Chef had from cooking made us all miss the Mekong and all those unique creations we would come up with in the kitchen.  Mom laughed so hard in Tammy it hurt, so she left early and we called it a night. The next morning the ice bucket challenge was circling around the house. Megan was nominated and she nominated Dad. Dad challenged Uncle Chris my moms little brother, our adopted uncle Ray, and adopted sister Francesca. Everyone being great sports participated and added awareness for Undifferentiated Endometrial Stromal Sarcoma, our favorite organization the Children Skin Disease Foundation (www.csdf.org), National Down Syndrome Society (http://www.ndss.org/Buddy-Walk/).  If you haven’t seen the videos they are on Mom and Dad’s facebook page take a look here ( https://www.facebook.com/mattnkimpham  ). All of these organizations are very worthy causes, and equally deserving of attention and awareness. 

This week there are no doctor appointments, just mom focusing on healing and boosting her white blood cell (WBC ) count. After her chemo cycle, the WBC drops and that’s how they know the chemo is in her system. They give her a Neulasta shot to take home and take the day after you stop chemo  which helps mom create new WBC. The way you know your Neulasta shot is working, all of your bones ache and feel like zaps, and all of it is normal because your WBC are being produced in your marrow.  Last week mom had a very low low count of just 1.0. We just had blood drawn yesterday, so we are waiting for the results to come back. The doctor’s office told us to expect her levels be low for up to seven to ten days after her last day of chemo, than it jumps right back up just in time for us to do the whole routine of fourteen days continuous chemo again.

Right now diet is restricted to no raw fruits and vegetables.  Until the numbers climb back up, we are still limiting visitors in case of risk of infection. But we are continually counting our blessings of all of the support all of our family and friends are sending and showing us. We love you and thank you so much for keeping us in your prayers and thoughts. Until real face to face meetings are plausible Google Hangouts and Facetime are happily welcomed! :-)

HUGS-

From Mama Pham: I just wanted to say I love and misses everyone so much. I hope to see everyone once I'm strong enough to and Stephanie says it's OK for visitors. I am fighting this, I have the Holy Spirit in me and it has given me the strength to give my all. Thank you for all of your prayers, love, support, and thoughts you are giving me. Love you, Mama Pham 

What a great day!

It was so nice to have Mama Pham be her usual self today. Steph and Mom did not get home until almost 3am last night after receiving the blood transfusion. This morning, I walk into the house and see my mom up and hosting the new insurance case manager. I had to ask her to take a rest! Then Joel, Joelson and I came back over to dinner tonight and we just spent the evening laughing with mom and the girls. It was good to see her sense of humor return and she even had enough energy to return a few emails, facetime and text messages today!

Praying for more days like today!

Chemo done early.

Steph and Mama Pham went to LA this morning for the Monday chemo refill and the team said no more chemo, they are going to give her the chemo break early on day 10! (Normally 14 continuous days on, then 14 days off = 1 chemo cycle.) Her numbers are low, so they are going to let her body rest. They are hopeful however that the medicine is showing signs of it working. The doctors also ordered her to get a blood transfusion as her hemoglobin levels are dangerously low. This afternoon after the appointment, they drove directly to the ER in San Diego for the transfusion. It's been a long day for Steph and Mama Pham, they are tired but are in good spirits.

Please pray that Mama Pham's hemoglobin levels stabilize, that the cancer has stopped growing, and that during this two week break that Mama Pham gets some much needed healing rest!

Week 1 completed.

Yesterday ends the first week of the Chemo fighting of this evil disease. We are slowing adjusting to our new life now and as each day passes we slowly start to comprehend what is happening to our "Phamily". All of us kids and Papa Pham are trying to be tough and simply put one foot in front of the other. We do not have the luxury of the time to pity ourselves, we are simply exhausted and just trying to get through. The sadness, anger, and resentment has not kicked in yet, just more tired than anything but we don't have anything we can ask for help with. It's such a strange and frustrating feeling. By now, a few of our family and friends know and we are starting the daunting task of telling others around us.  It's so surreal to say that "my mom has a life threatening or terminal cancer". We still haven't had the courage to make the news "facebook official" and it's horrible having sharing bad news with loved ones. My prayer is that only a handful of friends and family are ever going to have to read this blog. I hope that my mom beats and resumes to normal life before our annual friends (christmas card friends, you know the ones you love but only talk to once a year?) even notice that something was "different" about her.

Mama Pham went to get her refill of chemo yesterday and the doctors did not like the way she looked.  She is experiencing some chemo complications and they gave her more medications to counter act the effects. Steph and Mom spent the night at hotel in Los Angles yesterday to be closer to the doctors and returned today to the clinic for a follow up. They said the medicines are working, she looks better but they still want her to get another blood transfusion as her hemoglobin numbers are continuing to drop. Mama Pham is feeling a little bit better and is headed home tonight. I hope to see her in a few hours and we are excited to have some more Phamily time when the boys get home late tonight.

Today's Prayer: That the chemo continues to work rapidly, that the side effects are minimal and that we can slow down this cancer train and maybe even get it to stop entirely!

Thank you for all of your love and prayers!

When life hands you lemons....

You make LEMONADE!!

So after a full day at the treatment center, the medication she is on is toxic for her body. They look for twitches, tremors, slurred speech, and incoherent thoughts. Mom had tiny twitches, baby tremors, and only late late night before we went into clinic she had repetitive speech. ( I think it's because she was in between dreams but it's never bad to be too cautious! ) Her medical team decided to do a detox to balance the acidity levels in her body giving her this rescue pouch of "squid ink" (methylene blue), lots of IV fluids, and to reaccess her in the morning. Instead of driving home and back to the clinic for 2+hours we decided to stay close by. Not much going on in El Seguendo but we got a corner room, and that helped make staying in LA a little better! :-) 

Be Well,

Kim & Stephanie

The love that's felt across the world

Hello Family, Friends, Co-workers, Neighbors, and World,

Thank you everyone for all the love, support, prayers, thoughts, and energy being sent our way I can tell you that it is so comforting, and extremely humbling knowing we have such a strong army behind us that your love carries us from day to day. 

My mom appreciates everyone who has called or texted. Unfortunately, with all the surgeries and hospitalization I've had all her belongings i.e. her iPad and phone in her backpack and batteries have run out! :-( So please don't have a panic, she will get back to you once she has a free moment, otherwise she's been focusing on healing and stopping the progression of her condition by meditating. I try to update everyone as soon as I can, and I thank you for being so very patient with us as we makin sure mom gets the best quality care and attention! :-) 

During the weekends it's good for all of us to unplug from the electronic devices and recharge our human batteries. All of us kids have been home working together to make mom comfortable and spoiling her to bits, as she deserves to be!! Text and calls are welcomed, and happily taken... They just won't be  answered in a timely manner, but they will be passed on! 

Today was day 5 of chemo, nausea is a new friend in the Pham household, we really hoped he'd stay away. But in great fashion we've welcomed him and hope he's not here to stay. Fingers crossed all the anti-nausea meds will kick in and work!! 

Have a wonderful week!

Hugs,

Kim and Stephanie

We are home!

Mama Pham is so happy to be back at the house, sleeping under the same roof with all of the kids. Joel, Baby Joelson and I come over to visit and spend time with her every day. You can see through her tired eyes that she perks up when watching the little one running around. She even giggles a little bit when Baby Joelson creates a mess. (It's probably because she doesn't have to clean it up anymore!) Even though, Mama Pham is the sick one she's still taking care of us and wiping our tears.
Mama Pham is definitely tired and starting to feel the chemo's side effects. She is in good spirits and is determined to beat the odds. Please pray that the chemo works & for Mama Pham's continued courage to get through this.

Ok, first round of chemo is in!!

Fever is already dropping and color is coming back to Mama Pham's face! Please pray that the chemo can shrink the cancer and to give her the strength to get through this tough treatment.

We walked into Dr Chawla's office today and he took one look at her and shook his head. The whole team stood there in disbelief as to how fast her disease had progressed in one week. He hurried his team and said with or without payment he was going to start her treatment with in 10 mins.  Needless to say we are so grateful.

Papa Pham is in his way home to be with Mama and stay for the weekend. We are on our way to a hotel for the night. The doctors want to see her first thing in the morning.

Now for the last challenge for the night, to find the Vietnamese sour soup my mom is craving!

We've been released!

Steph is driving Mama Pham directly to Dr. Chawla's office. Chemo day 1 here we come! Please pray that God calms her nerves, kicks this fever and let this Chemo work.
I'll update you again soon.

Still in the hospital.

Mama Pham's fevers are still around 102 degrees peaking every few hours, then come down after some Tylenol. The cancers are continuing to grow and cause more problems. The doctors don't think she has an infection, they think the fevers are from her body trying to fight the cancers. So far all of the blood cultures are coming back negative. The doctors have added an extra antibiotic just to be sure, there are no hidden infections.

Please pray that nothing new pops up and that Mama Pham is able to be released to start her chemo tomorrow.

Mama's First Infection

Yesterday, Mama Pham spiked a fever while she was having her wound care. The home care nurse, then contacted the doctors and we were instructed to take her to "urgent care". Knowing that we had our follow up Oncology appointment in a half hour, we thought it would just be smarter to go directly to see her doctor.  When we arrived, we learned that her appointment had been canceled due to the fever and that we needed to report to urgent care.  Urgent care had a 3 hour wait, we were finally seen and then they ordered scans, took X-rays and many blood test to try and find the source of infection.  They then decided to admit her for the night and start her on powerful antibiotics since they were still not able to lower the fever.  We don't know anything yet but I will keep you posted.  Right now, please pray that we can find the source of infection, treat it with the proper antibiotics so we can start Chemo asap.

New Phamily Rules

First, we'd like to apologize to all of those trying to call/text/visit us. My sister Stephanie and I (Jen) have taken point on helping Mom through this journey and we are currently draining upwards of 2-3 cell phone batteries a day trying to advocate for her. Please understand that though your love is greatly appreciated, we need to focus our time and urgent resources in securing the best care for Mama Pham possible. We have been consulting the best doctors from all over the world, navigating the complicated insurance policies, taking a crash medical school level course on Sarcomas, scheduling appointments and preparing the Phamily and house for Chemo.

From this point on, we please ask that all of our loved ones:

1- leave your well wishes on this blog and we will share them with Mama Pham when she will be needing them most.

2- please DO NOT call her as she needs her rest and because she is unable to use her phone in the procedure areas. If it is an urgent matter, you are welcome to text my cell phone number.  If you do not have it, please message me and I will send it to you. She has been through 4 surgerys in the past 8 days all of which have required her being fully sedated. Her voice is harsh from the intubations, she's in pain and exhausted.  We promise to have her start returning phone calls/ text/ emails once things settle down.

3-as we start Chemotherapy, please do not drop by the house unexpectedly. We have to now control for infections as her immune system will be severely compromised. We have facetime/google hangout/video chat/skype and plan on using it a LOT! You will get to see her, we promise!

4- Our care team of (Sarcoma Cancer Specialists, Doctors, Nurses, Nutritionist, Physical Therapist etc..) have her on a very specific regime for her best chances of survival. At this point we are unable to integrate any other forms of alternative treatments in conjunction to the powerful Chemo drugs to work on the first try.  We will gladly take the contact information for any alternative practitioners but we can not start any of them until after the first round of Chemo.

5- We kindly ask that you respect our Phamily space, we are all overwhelmed right now.  We know that you love and care for us and your cards/gifts/emails/text messages and well wishes mean the world to us but right now we need to do what is right for our mom. We promise to use this website as much as possible as it will be the SOLE means of communication. We will update you almost daily as to the procedures and her progress. Know that we are receiving your messages, we just can not respond to them all.

We love you all very much.  We greatly appreciate your support though this journey as we fight Phamily style for Mama Pham's life.

Many Hugs,
Jen & the Phamily