Wednesday, September 22, 2010

Day 29

Wednesday September 15, 2010

Today I spent the day in Los Angeles while Todd took Nina to radiation. It had been almost a month since I had met with the Cedars team and Linda in all her wisdom thought it was a good time to have all the different team members convene for a little "Nina Fredeen" pow-wow.

I left Santa Barbara early and drove directly to the Marban's home. When I got there I was able to sneak through the gate, where I found Megan (the Marbans 24 year old daughter who is in medical school) walking toward the house. In retrospect, I was totally creepy but I was caught off guard by Megan's presence. For a minute, just a minute, I silently watched Megan pull out her ginormous book bag and piles of notebooks. Megan is a tiny, stunning girl. As she walked toward the house, from an obvious all-nighter studying at the library, I watched her yawn and pull her gorgeous hair into a ponytail. All of the sudden, I felt a lump grow in my throat. I realized that as I watched Megan, I was also simultaneously imaging what Nina would be like at her age. Would she be in medical school? Would she be helping kids with autism? Would she be an artist? My heart skipped a beat as I also recognized that I may never have the privilege of knowing the answers to these questions and all of the sudden I got very sad. That's when I cleared my voice and greeted Megan, scaring the poor girl half to death! I guess if all else fails, I can become a private detective given how sneaky I can be!

As soon as I walked into the house, Linda have me huge hug. She and Megan took a few minutes to catch up then Megan excused herself. If I haven't said this already, I'm going to say it now....Linda has a freakish sixth sense...unlike anyone else I have ever met. As soon as Megan left the room, she commented to me how she is often saddest for me when she is spending time with her older daughters. We both cried! She knew I had been thinking about the same exact thing. It was good to cry with my friend. Sometimes I try too hard to not cry!

Linda and I had lunch at a beautiful little restaurant near Cedars Sinai. It was so wonderful to be in her company again but it was very surreal to be back in that area. The last time I had been walking the adjacent areas of Cedars with Linda I had been screaming like a madwoman, scaring the beautiful people of Los Angeles! It hadn't even quite been an entire month since my previous visit but it felt like an eternity.

After lunch, we had a bit of time before the meeting with Dr. Danialpour and Dr. Fae Majlessipour so Linda took me to their lab. Now, I knew that the Marbans did heart research and something with stem cells to treat heart attack patients. I also knew that they were both incredibly smart. However, after I visited their lab I was glad I didn't know the extent of their genius and work until now; if I had I think I would have questioned the appropriateness of my requests for their help, which I know is silly, but nonetheless there it is. Linda and Eduardo have taken me in as their sister and have made my family theirs. They are the humblest and kindest of people, and I will never be able to repay them for what they have done for us!

Eduardo and Linda are not just smart-smart, they are Einstein-smart! In essence their research and work is going to revolutionize medicine, no doubt about it. I consider myself to be decently intelligent, but I am not Einstein-smart so pardon my pared-down explanation of the Marbans work :) In a nut shell, they collect a small piece of heart tissue from a patient who has had a heart attack. The patient's very own heart tissue is then put into little petri dishes and over the course of 4-6 weeks millions and millions of new heart stem cells grow. As these new heart stem cells grow they can even start to beat in the actual petri dish (how crazy is that!!!). After this period of time, the patient's stem cells are reintroduced into their own heart and they help the heart heal. Their data is not completely collected but in some of the early cases the patient's heart completely healed and their was no scarring left from the heart was as if they had never had a heart attack in the first place. Up until about a decade ago, no one thought the heart even had stem cells. As Linda told me all about this, my mouth was permanently agape. It was like something out of a science-fiction book (which I love!). I was floored and so proud of my friends! For more information please visit

After the tour of all tours, we all went to Dr. Danialpours office to meet. It was great to see Dr. Danialpour and Dr. Fae. The medical team from Santa Barbara joined us by conference. Originally, I had planned on joining Dr. Brennan at his office to call with Cedars team, but then I decided it was best to come see them in person. There are just to many things (i.e., nonverbal behavior) that get lost when communicating through technology. Human to human interaction in these types of circumstances is still best.

In essence, Dr. Danialpour and Dr. MajlessipourAvastin. They were extremely encouraged with Nina's progress and explained that they had treated over 500 children with these drugs and had not seen the major side-effects that I most feared (e.g., hemorrhaging). I was very happy to hear that they were encouraged. We all knew, and discussed, that only a miracle was going to heal Nina but the fact that she was doing so well, was in itself a small miracle. Doing the chemotherapy would not cure Nina but could further shrink the tumor so that we could have more time. More time meant that potentially we could find something else to save her life.

As we sat and discussed all the reasons to do chemotherapy, and not, I was blown away by the sheer fact that a month earlier I had sat in the very same chair and conceded that more than likely I was taking my daughter home to die within a month. Now, I was sitting in the same chair talking about how we could maybe get 6 great months, or even 9, or even maybe, maybe 12!! Of course I wanted time with our daughter!!! Who wouldn't?? However, again I had to remind myself and everyone else that we were not willing to add more time if it would cost Nina quality of life. We would not be selfish and put her through excruciating pain! That expense was not an option for us! The assurance I needed came when Dr. Danialpour explained that we could discontinue chemo at any point in time; if Nina was in pain and not responding well, the we could stop. When I heard this I released an audible sigh of relief. Dr. Danialpour smiled and said that he hoped that this time I would consider him the "Barer of Good Hope" instead of the "Grim Reaper"....damn he read my blog!!! I laughed and reminded him that I had also greatly complimented him. We all hugged goodbye and I left with a different kind of heaviness this time. Bottom line, my daughter was strong....but how much of that strength were we willing to test???

The rest of my evening in Los Angeles was peaceful. It was a delight to see the Marbans and friends. As I climbed into my car to drive back to Santa Barbara I felt a deep warmth grow within me. Part of that growth was the encouragement I had received that day from our entire medical team....the other part was a fever!! I was sick!!

1 comment:

  1. Still reading and praying for you. Thanks for your candor and capturing so many of the thoughts of this scariest of journeys. Terrifying, yes, but there is beauty and noticing that is certainly part of what keeps us sane.

    Rolf and Trish