Day 140

Tuesday January 4, 2011

Today was MRI day. I woke up at 8am but when I tried to move, Nina locked her legs on top of my mine and wrapped herself around my left arm. I was trapped! I didn't dare move because I was afraid I'd wake her up then we'd really be doomed. I texted Eileen telling her my predicament. She just sent me a smiley face, laughing! What a rascal!

I lay there for 3 hours!!!! I was determined that Nina sleep as long possible, buying us time and hopefully sparing us heart ache! I wasn't able to go back to sleep! My mind was going crazy! Every dark and awful thought I'd ever had was trying to gain status as top dog, reigning terrible thought! So....I lay there and made myself engage in replacement behaviors. Thinking about the looming gloom did me no good! So...since this wasn't an option I needed to reframe. This is what I'm so desperately trying to teach Teddy! I closed my eyes and tried to think of all the wonderful things we could do with Eileen this week. I turned each new thought into a movie in my head, filled with as much detail as possible! I did this for 3 hours!!! Over the past 5 months, I have found this strategy to be unbelievably helpful! Each time I start falling apart, I make myself focus on something good in my life. I then turn that event, person, activity, into a "movie" in my head. Sometimes I go as far as building a soundtrack to go with my movie. I know it sounds weird but being able to do this has kept me sane! At this moment in time, what my dearest friend Eileen didn't realize was that I had an entire elaborate agenda planned in my head :) Boy was she in for it :)

Around 11am, Nina woke up. She was in a great mood and immediately asked to see Eileen! She and Eileen hung out on the couch watching cartoons as I showered and had some coffee. She was so snuggly with Eileen and Eileen loved every precious second of it!

Linda returned to the house around 1ish to pick us up. At this point Nina started to cry, but a low grade cry, not like the night before. She insisted that I be by her side; there was no other place on earth I'd rather be! We arrived at Cedars and her crying had dissipated. Linda introduced her to a new iphone app....a cupcake game that Nina instantly fell in love with! I went through the rig-a-ma-roll off the intake and before we knew it Nina and I were being called into the MRI, ready for sedation. This entire time, sweet, precious, and ever so brave Nina never once asked for food. God has given this little girl the spirit of a warrior!! She is downright extraordinary!!!

The anesthesiologist was a lovely man who listened to my protocol for sedating Nina and before long she was out and the MRI was started. We had an hour before Nina would be pulled into recovery so Linda took us to grab something to eat. Over lunch, we conversed about Teddy and Nina and went over plans on how to ensure that we had the right support system in place. I am so eternally grateful to be surrounded by friends who will battle (even me!) to make sure that we have all that we need. Sometimes we need things that we don't even realize we need until they are pointed out to us. It is so vital to have such friends; friends who will speak up and step in, with grace and love. Saying thank you just seems so meaningless, but to all of you that have and continue to support my family.....THANK YOU!!!!

In the meantime, I tried to track down Todd to no avail. I wanted to make sure that Teddy was going to be picked up on time. I had arranged for Holly to pick up Teddy and keep him with Jake for a playdate as a back up plan. I always have a back up plan! No matter how wrapped up I get in Nina and her treatments, I never stop thinking about Teddy. How can I?!?!? He is as big a part of my heart as Nina and needs as much of my love and support as she does. As I explained to Eileen and Linda over coffee, I'm surrounded by tons of people but I still feel so all alone, especially in regards to Teddy. He is such a special boy, literally and figuratively. He is the most unique boy I have ever known and I am not saying that just because he is my son. He truly is and those who have had the privilege to get to know him now understand. As such, he requires constant planning and nurturing! Eventually, Todd responded to my barrage of texts. He hadn't been feeling well. But then again, who is these days? I know I am not, probably never will again! I ironed out details for Teddy and asked Holly if she could take Teddy on a playdate after all. She lovingly agreed, but that is Holly, always available and willing to lovingly lend a hand! What a blessing of a friend!

Once in her stroller, Nina stopped crying. Nina loves that stroller. It has become her safety blanket, her source of familiarity and comfort in an ever changing landscape of white corridors, lab coats, and scrubs. My precious honey-girl!!

As Nina and Eileen played Dora and the Crystal Kingdom on the computer, Linda, Eduardo and I met with Dr. Danialpour. I adore Dr. Danialpour for a myriad of reasons and I deeply appreciate all of the accommodations and attention he gives us! However, I think what I love the most about him is that he is a hugger. For the most part, doctors don't seem to be the "huggy" type but not Dr. Danialpour. From the moment I met him, he has always given me a hug. Sometimes, all a heartbroken mom needs is a hug!

Prior to meeting with Dr. Danialpour, Linda and Eduardo had primed me that the news was good. I wasn't sure what to think about this. Good news to me meant that the tumor had shrunk, better yet disappeared. As Dr. Danialpour explained the results of the MRI, it became clear that "good" was a very relative term. The tumor had not shrunk nor disappeared. In fact, nothing had changed since the MRI in November. The chemo seemed to be working, especially the Avastin, since there was less enhancement in the results. There was also no edema. This was all "good" news. No change was good news. This all meant that we had time. Nonetheless, I still felt empty, numb, stuck!

For a good long while we talked about how to proceed next (continue with the same protocol), how to monitor symptoms and when to reintroduce steroids, how to know when symptoms meant she was just having a bad day and when symptoms meant things were turning for the worst. Dr. Danialpour graciously answered all of my questions and said that the next step would be to take another MRI in two months to re-evaluate the tumor. Bottom line, we had time. During this time, the doctor made it clear we would have good days and we would have bad days. However, he and the Marbans did make it clear that when things took a turn for the worst it would be as apparent as the searing sun in the sky....it would be a dramatic fall of the cliff. I felt nothing!

Cognitively, I understood that no change from November was a good thing and obviously I am thankful for time, but I also felt empty, like I had no really "new" information. No one could or can really tell me how quickly this falling off the cliff will happen (if it does....still hoping!!!) and exactly how her potential death will look like. I want to prepare!!!!!!!!! I need to know and there are so many things that I can't be told. Bottom line for me, Nina still has that monster in her brain and she still has a death sentence!!!!! My skin burned and my heart pounded with indescribable pain!!!! My baby was still dying!!! Her body was giving way and she was aware of it, aware of how she couldn't walk as well as she had at Christmas, aware of how difficult it was to stand up by herself, aware of how labored her breathing and talking were becoming, aware of how hard it was to string thoughts together, aware of falling apart!!! By far, this is the absolute worst!!! Seeing her self awareness!!! I can honestly say that it is a fucking living hell!!!! To watch your precious child be aware of her sick body....there is nothing more painful or awful!!!!! I can't even bother trying to describe how it feels....there are no words....I just cry!!!!!! It is hell on earth!!!!!!!!!!!!!!!!!!! HELL!!!!!!!!!!!!

After hugging Dr. Danialpour goodbye, I returned to Nina and Eileen. I hugged Nina tightly and reminded her of how proud I was of her and how much I loved her!!! She smiled! For her, it was over! She had moved on!! She had found something to make her happy and was eagerly engaged!! I want to be that girl!!!!!

We returned and had dinner at the Marbans. Before we left for Santa Barbara, I had my session with Dr. Linda :) Linda was extremely worried about me. She understood clearly where my pain and lack of outright jubilation was coming from. She understood I was living in hell, nevertheless, she also understood I needed some of my own medicine thrown back at me!!! As such, she lovingly reminded me that life is a gift and that it is our responsibility to make it wonderful and meaningful, not to get trapped in grief or allow fear to confine us! I know this! My heart and soul know this!! Sometimes, my ass just needs a kick or two to get it going again!

We thanked the Marbans, our eternal guardian angels, and headed back to Santa Barbara. Nina was elated to go back home! Sweetness!!! I was elated to have my honey-girl happily watching Sponge Bob in the back seat and to be holding my dearest friend Eileen's hand! I was grateful for everyone that had taken care of us at Cedars, for the Marbans, for Dr. Danialpour, and for the provisions we had been given. As we drove through the darkness of the 101, I thanked God for life. Life is a precious a gift from Heaven and it warrants our gratitude and love for God! I just need to keep reminding myself of that!!!