7/6/18 Floods and Fireworks

Hello all! This is Daniel James here, writing on behalf of my amazing mom! I have some updates about her health and the cancer-fighting journey.

My mom and I arrived in Houston on the 4th of July, it was very wet, stormy, and humid. The storms were so bad that it flooded  downtown Houston. Our flight was nearly cancelled, but it proceeded on schedule. The heavy rains flooded the downtown fireworks event, and it had to be canceled (more on that later).  

We were happy to arrive safely, happy that we were on an Alaska Airlines flight which lets you stream some free movies on your phone (one small thing I can be useful for is orchestrating the technology in my mom's life!), and we were happy to be staying at the hotel connected to MD Anderson (which makes getting to my mom's many appointments at the hospital much more convenient because you can just walk over from your room via a vey cool sky bridge). Happy and hopeful was the general feeling upon our arrival. 

We started Thursday of this week with one plan, and by the end of the day things had changed drastically. The plan had been for my mom to go through a few pre-surgery checks and tests, prior to her planned surgery on Friday (7/6) (4 scheduled visits in total). We went to 2/4 visits, which at this large cancer hospital ended up taking almost the half the day (lots of patients here, and your visits never seem to start on time). We were feeling hopeful for our last visit of the day with the study physician, however, we got a call in the middle of visit 3/4 that her labs from that day showed that she had some electrolyte abnormalities, and the surgeon did not feel comfortable operating on her because of those abnormalities. We then immediately were told to meet with the clinical trial physician who gave us very, very disappointing news that he did not think the surgery and the tumor-infiltrating-lymphocyte (TIL) study was a good idea right now. He based this decision off of the fact that she has had worsening pain (suggesting worsening cancer), the aforementioned electrolyte abnormalities, and also she has some redness around her power port (an implanted catheter she has for receiving chemotherapy) that might be an early infection. These three problems-- that all seemed to come up out of the blue-- led him to say that she would not be eligible for surgery or the trial at this time. 

This was very sobering news, as we had all been looking forward with great hope to this surgery and the TIL study which has had really promising results for people with similar cancers. It seems as if the surgery and TIL study are not an option at this point in time. However, the study physician was very clear that she would still be eligible for the TIL study in the future if she was more "medically stable" (i.e. normal electrolytes, no skin infections, and more stable pain). This is good news-- that theoretically my mom could still undergo this trial in the future, if her disease could be controlled better. 

The canceling of her surgery and TIL trial at this time is very disappointing news, and it is hard for us to cope with. We had hoped that this trial was an answer to prayer and a way of treating my mom's cancer is a potentially curative way. I am very sad about this, however I have hope and faith that she may find benefit from additional treatment from her oncology team at the University of Washington. If she responds well to a new treatment regimen at home and has a period of remission or stable disease, that may provide a window of opportunity to return to MD Anderson in a more "medically stable" condition to proceed with the TIL trial.

While it is disappointing, it is good news my mom did not have a bold, risk-taking surgeon who pushed for surgery in the face of these problems. The risks of going into surgery when one has electrolyte abnormalities are much higher, and I am very glad we are not taking those additional risks. 

We are going to head home early (leaving tomorrow), and we will be planning the next steps with her oncology team. I hope that my mom can continue to stay strong through a little more treatment, and that her cancer can decrease in intensity to a point where she could be eligible for this trial in the future. 

As I mentioned earlier, downtown Houston was flooded from storms the day we arrived, and the entire set up for the big fourth of July party was washed away or ruined by water (see picture below). The mayor of Houston had to declare that the festivities were cancelled. After the rains and the floods let up, hordes of people, workers, volunteers (fans of fireworks I suppose), worked together to clean up the mess, and reset the fireworks display. By the time sunset came, they had approximated a stage, and set up the fireworks in a new location, and the mayor announced that the fireworks show was back on! A country musician came to perform, people came out in the mud and rain, and there were fireworks! Despite the floods and storms, they worked together and put on a great show (which we watched part of from the comfort of our hotel room). I couldn't help but reflect on this story and find similarities, as we heard the disappointing news that due to circumstances out of our control, my mom had this wonderful thing cancelled. It sucks. It is hard to deal with the disappointment of something you are looking forward to so much. But like this little fourth of July story, I hope and pray that the "show goes on" for my mom. Maybe after some more treatment, maybe in some more time she will be ready and stable enough undergo this TIL study. 

I am so proud of my mom. She is so brave in fighting cancer like this. One little example of this is when we went in for her labs (visit 1/4 yesterday), they had to take EIGHTEEN vials of blood (10mL each), which is about half of a pint of blood just taken for labs, and they had to stick her arm in multiple places. She sat there smiling, asking all the nurses, techs, students, front desk staff how THEY were doing, and wishing them well. She is truly the most selfless, loving person I know, and it breaks my heart to see her suffer. Those of you who know her knows that the grace and Christ-like love she shows to others is remarkable. She is my hero. 

We continue to pray for God's peace for my mom, our family, and for all of you who worry, hope, pray, cry, love, and care for us and with us as well. We are all so grateful for your support. We are grateful for all of you who give us so much love and support. We are grateful to God for his love, peace, and promise of eternal life through Jesus. Thank you SO MUCH for you continued support, well-wishes, prayers, virtual and digital kindnesses. We are very grateful for all of you. 

My mom, the only person I know who can still smile while getting 18 vials of blood taken from her!

Downtown Houston fireworks set up after severe rainstorms on 7/4/18.

The show goes on!