The Pham Family confronts the fight of their lives in order to save the life of their beloved Mama Kim Pham from Metastatic Stage 4 Terminal High Grade Undifferentiated Uterine Endometrial Stromal Sarcoma. We will share our journey from a medical, emotional, logistical and faith filled perspective. This blog was meant to update our many family and friends of our daily quest to beat cancer and save our mom. Please pray with our "Phamily" as you follow along with us.
Wednesday, December 31, 2014
Last of the IFX Treatment...
Sunday, November 30, 2014
Results from second CT and next course of treatment.
The tumors are continuing to respond and they have continued to get smaller, but there is still a good sized central one (1x3x8 cm). Dr. Chawla wants us to find a suregon to remove it so that he does not have to give Mama Pham as much chemo and so that she has a chance at a better long term outcome. His biggest concern is that Mama Pham is going to develop resistance to the currently very strong medicines she is on or worse no longer be able to tollerate chemo at all. The issue is, Mama Pham's cancer is so rare that the doctors don't know what to do next. There has been very little research because the survival rate for this kind of cancer is so low. She is beating all of the odds and surprising the doctors that we have encountered. We are not even close to being out of the woods yet, but we are so thankful for this borrowed time.
Last week, we had a surgical consult at the UCLA Sarcoma Center with Dr. Fitz Eilder and he said that at this point he would not be willing to operate, since Mama Pham is metastatic (multiple cancer spots). So back to square one we go searching for surgeons. We are on a mad dash to find a gynecological oncologist surgeon who has been successful with sarcoma removals/treatment or an oncology surgeon who has experience with pelvic sarcomas who is willing to operate on this complicated case. With the holidays approaching it is a challenge to get an appointment, but in true Phighting Phamily fashion we have hit the ground running contacting doctors all over North America.
So, prayer warriors this is what we are praying for:
1. That we can find the right surgeon to work along side Dr. Chawla to figure out a successful course of treatment for Mama Pham.
2. Give her the strength and health to continue chemo
3. That this 3rd Round of Chemo continues to be effective and shrinks the remaining tumors.
We hope you all had a great Thanksgiving Weekend with your families. We were fortunate to enjoy a few days of great food and fellowship with friends and family.
Back to chemo we go tomorrow. With much love and blessings from our Phamily to yours!
Friday, November 7, 2014
Happy Friday!
Few more days till we finish this round of chemo, but blood counts are low so it's the start of isolation week again.
Today this dynamic duo got to spend sometime outside watering plants and enjoying the warm weather. It's the simple things in life now that bring such joy :-)
Saturday, October 25, 2014
Goal one achieved!
Three months ago, during some of the scariest days of our lives. The doctors told us that my mom would not survive long enough to see today.
During one of those intensive days when she was hospitalized with fever, we got the save the date for a family friend's wedding. My mom loves this girl like a daughter. When we were reading her mail out loud to her, with her eyes still closed in pain she pulled off her mask and told us that her goal was to watch Keeani walk down the aisle.
Well everyone, I am very happy to report that not only did mom get to share in the beautiful day, she walked in on her own looking great! Chemo & quarantine starts again Monday. Now I guess it's time to set a new goal!
Here is my ecstatic mom and the happy newlyweds!
Tuesday, October 21, 2014
High blood counts don't WIG out...
Tuesday, October 14, 2014
Third Cycle Complete!
Mom has finished round three! She is happy to be officially free of all wires, wounds care, and tubes. The current chant in our house right now is FREEDOM FREEEEDOM FREEEEEEEDOMMM!! (fist pumps in the air included) So for now we sit and wait for her counts to rise up again. She had a Neulasta shot today to boost white blood cells and a Procrit shot yesterday to boost the red.
Currently, her counts are very low-
WBC: 1.2 k/ul (Normal Range 4.1-10.9)
GRAN#: 0.6 k/ul (Normal Range 2.0-7.8)
HGB: 8.8 g/dl (Normal Range 12.0-18.0)
When counts are back up, we will let everyone know when it is safe to visit. But we do ask that everyone please stay away if you have been exposed to anyone with flu like symptoms or if you yourself feel the symptoms. There is only so much we can do to protect mom and make sure she doesn't get an infection. This is one of the very few things we can do and just prevent it entirely right out of the gates. The Phams are all ready for flu season and have gotten the most up to date version of the flu shots. We encourage anyone who would like to see mom to get the shot of the dead virus 2015 flu shot. The nasal version is the live one and we won't be able to visit if you have that one. But we will be keeping extra precautions during this fast approaching flu season. I know this may seem very neurotic to some of you, but this is the only way I know how to keep my mom safe and free from infections, so we don't get blindsided, or knocked down a couple steps we've been struggling to climb these past few months. So thank you for being patient and understanding. We love and thank all of you so much!
From Mom:
Her spirits are still very bright, and she is focusing on healing. She would like to thank everyone. All the love and prayers fill her with hope, and strength. She loves everyone so much and keeps all of you in her daily prayers and she misses everyone deeply. :-)
BIG HUGS and LOTS OF LOVE-
Kim and Stephanie
Saturday, October 4, 2014
First week: Third Cycle
Mom sends everyone big big hugs and we thank everyone for your continual prayers!
XOXO
Monday, September 29, 2014
Time Flies When You're Having Fun...
Today marks the end of our two week break, and like last time it came and went with the blink of an eye. We didn't have to move at a rapid pace, but we were still very busy. That must be why it felt so fast.
During the first week, mom was completely wiped. She would just pass out mid sentence, from what I observed she was more tired this break than the last. Friday last week we were able to get mom squeezed into a PET/CT appointment. On the drive home we received a call from Mom's primary care physician (pcp-Dr. Jabbarpour) office, and they were just given the preliminary report from the radiologist saying that Mom's scan showed "remarkable improvement" they will fax a report to Dr. Chawla's team, and that we would have to go the PCP office to run over the full report and just to get everyone on the same page since she has been out for three months on maternity leave. But while she was out all of this was happening, so her WONDERFUL team of nurses, schedulers, and her subs while she was gone (Dr. Allos & Dr. Coyle) have been so incredibly helpful, very understanding, quick to get things approved, and have helped gotten us plugged into the places that we need to be.
During the second week, we met with Dr. Jabbarpour and we found out that the spots on her lungs have completely dissolved, the masses that were all over have shrunk, including the big massive mass on her right side has gone from 14cm down to 7cm, and that the cells no longer look like they are dividing, which means it's frozen until it dissolves but it neither grows, or is alive anymore. Mom was slightly upset at first that everything wasn't clear immediately, it took her a couple days to finally accept it takes baby steps and that this step is headed in the RIGHT direction. You don't have to bat 100/100 right out of the gates and that it takes time to heal and finally get back to 100%.
We had a very great two week break, the good news kept flowing in. When you have tricky medical issues, the insurance company and the hospital have a division of nurses who are Complex Case Managers, who help fight insurance, get approvals faster, and help you navigate this delicate healthcare system. We have two awesome ladies one from insurance and one from the hospital who have been so helpful and when issues arise I give one of them a call and they speak with one another and try to figure out a plan to help make our lives easier. We were able to change labs, because we went to our local LabCorp and I would NOT recommend you go there for urgent matters. We had a STAT order and a note from the doctor asking that we are given a hand copy to give to doctors. We thought it would be right away at the earliest to maybe a couple days... Yes, we are still waiting for results from two Tuesdays ago and all the others after. Luckily, while we were at Dr. Jabbarpour's she set us up in one of her patient rooms and had a Lab Tech come up and get Mom's blood instead of making her sit downstairs with everyone! We found out 30 minutes after we left with a personal phone call from Dr. Jabbarpour herself that Mom's counts are back up WBC of 16 and HGB is at a 9 so her numbers have finally balanced back out. As soon as her numbers were back up she asked for one and only one thing to see her medicine, and we happily obliged. Joelson came over for a couple days for a couple hours to hang out with "Amma" and she loved every bit of it.
Friday, September 19, 2014
Praise Jesus!
I promised that I would update as soon as we knew anything! I just got a text message from Stephanie, Mama Pham had a PET scan a few hours ago and the radiologist said mom is showing "remarkable improvements"!!!! The chemo round one has worked!!!!
Praise all of the Gods that all of you have been praying to! We greatly appreciate this prayer for a miracle & are on bended knees in humility.
We are not even close to being out of the woods yet, but without this positive sign today mom would have been sent to hospice. We now have a fighting chance and doctors will actually allow her continue chemo to try to beat this deadly cancer.
We are hopeful and beyond excited. I feel like I'm taking my first deep breath in months & couldn't wait to share the good news! I will share more when Dr. Chawla analyzes the full report and gives us the next steps.
Love to all of you!!
Wednesday, September 17, 2014
Th-Th-Th-Th-Th-... That's all, folks!
First off thank you so much to everyone who has been so patient with us! I know we haven't been updating this blog as often as promised, but there is NEVER a day we don't appreciate all the love, thoughts, positive energy, and prayers. IF anything all that warm love is definitely being felt even more. During the weeks we are on Chemo, there is little to no time to update as frequently as we'd like to... And not to mention our go to blog girl Jen has started a new position at work we're so proud and happy for her but that has left her unable to update also. So your patience has been SOO greatly appreciated. If you've also sent mom private texts and emails she's been exhausted this round and hasn't been able to get around to all the messages, but she will try to during this break when she gets more energy. BUT I recommend you being patient with us and wait for a response or just leaving all your love on this blog and she doesn't feel overwhelmed and worried about having to write back to you when she is exhausted. Thank you! :)
Towards the end of our last two week break Mom's WBC after the Neulasta shot boosted all the way to 22. The normal range is from 4.5-11, so when we told Mom to think boost WBC she went above and beyond. We teased her that you can take the mom out of the tiger, but you can't take the tiger out of the mom! :) By the end of the break she was back to having more energy and her appetite was back. Just in time for us to start the whole cycle again, nausea, loss of appetite, lowering WBC counts, etc. So as on schedule we started the second cycle on September 2nd and all the symptoms along with fatigue played out over the course of the first week back on chemo. By the second week even though Mom's counts were dropping she tolerated the meds better, her appetite came back sooner, nausea's stay was short, and she was able to stay awake for longer periods. Then by the 10th day of her cycle she was cut short again, as her WBC dropped back down to 1.3. She was luckily able to squeeze in the four bags of Chemo to complete her full cycle before her counts dropped that low and she didn't need a transfusion this time around!
Which brings us to the conclusion of her second cycle and now the waiting game has begun. Mom got her Neulasta shot at the beginning of the week and like last time she has the pain from her all of her joints, and this time it's knocked her out the first few days after the shot. We are in a bit of a standstill at the moment, we are waiting for Mom's PET scan to see if the meds are working the way they are supposed to be. According to Dr. Chawla, she is looking better and feeling better that is always a great sign.
We continue to count all of our blessings with the outpouring of love and support, everyone is sending. We also keep all of you in our prayers, and can never thank you enough for all the positive energy you are sending our way!
HUGS-
Sunday, September 7, 2014
No News is Good News...
Sorry we have not updated the blog in a few days. Things are finally starting to settle down here at the Pham Headquarters. Mama Pham started round two of Chemo on Monday. She is more tired than last time and is feeling the side effects more- everything currently taste bitter :-( We are in a holding pattern of sorts as we wait and see if the Chemo treatment is working or not. After these next seven days, Mama Pham will then under go another CAT scan to see if the cancer has stopped/slowed down or not. We are praying that is does. If the cancer responds well with this treatment, Mama Phams prognosis gets a lot better and we will be able to enjoy her for quite a bit longer than originally predicted. We promise to continue to update you as we learn anything new- as of now nothing has changed; we are in an isolation bubble, trying to keep mom's spirits up, and helping her get as much rest and nutrition as possible. We love and miss you all very much and are continuing to pray for a miracle! Thank you for your continued support and positive thoughts and prayers.
Friday, August 29, 2014
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.
Tuesday, August 26, 2014
During the two week break...
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-
Wednesday, August 20, 2014
What a great day!
Praying for more days like today!
Tuesday, August 19, 2014
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!
Friday, August 15, 2014
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....
Monday, August 11, 2014
The love that's felt across the world
Saturday, August 9, 2014
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.
Thursday, August 7, 2014
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.
Wednesday, August 6, 2014
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.
Tuesday, August 5, 2014
Mama's First Infection
Saturday, August 2, 2014
New Phamily Rules
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
Thursday, July 31, 2014
Dr. Chawla - The Sarcoma Hero
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
Wednesday, July 30, 2014
High Grade, Aggressive, Undifferentiated Stromal Cell Uterine SARCOMA
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.
Tuesday, July 29, 2014
The prognosis...
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.