Day 2: Part III

At Cedars Sinai

Day 2: Thursday August 19, 2010

Until Thursday August 19, 2010 I didn’t realize that time can feel heavy. Most of the ways we refer to or describe time are related to speed (i.e., time goes by fast, the day has been slow, time breezes by, where did time go?). But once I arrived at Cedars, time itself took on a different property: weight. Time isn’t something tangible, yet from 3:30 pm when we first arrive until midnight when I finally went to bed, I felt like the weight of the world had been placed right onto my heart. I wish it would have been placed onto my brain; I think I could have handled it better that way. But on my heart…man, that just sucked!

Within minutes of arriving, Nina and I were whisked into a room with brilliant, beautiful people in pristine white coats. Unlike the awkwardness and even coldness I experienced earlier in the day with the “androids”, the Cedars doctors/staff were all warmth. They smiled. They didn’t avoid eye contact, but looked at me straight in the eyes, confidently, with a hint of sadness for me, which is okay! I prefer honesty. The eyes cannot lie. They even hugged me!!! My favorite part was when Dr. Moise Danielpour squatted down in order to be at Nina’s height and greeted her with a wonderfully sincere smile.

What is especially noteworthy is that Dr. Danielpour is a gigantic man, larger than life (at least 6 foot 3) and is considered one of the world’s best pediatric neurosurgeons. He was also the first doctor during this entire fiasco to get down to my child’s eye level. Adults forget how intimidating being little, small in stature, can be when you are surrounded by strange people who are all taller than you and constantly hovering over you with pokey objects or scary looking tools. Praise God for Dr. Danielpour’s wisdom. My child needed that kindness at the moment in time and he delivered it without any hesitation. If I weren’t already impressed with Dr. Danielpour, he then completely won me over when after greeting Nina he scooped up her into his humungous arms, held her tightly, and carried her to the room where we would be meeting. All along he spoke to her gently and securely, the way only a father of a daughter can do (later I found out that Dr. Danielpour has two daughters so it all makes sense).

Once inside the examination room, I recounted the events of the past two weeks for the umpteenth time. All the while, Nina sat on my lap, listless, practically unresponsive, and drooling a constant waterfall. Every once in a while, she would lean her face into mine and kiss me, the sweet most slobbery kiss. I cherished each and every one of them. Once, when she gave a particularly long and wet kiss right on the lips, I noticed tears well up in my friend Linda’s eyes. She, along with her husband Eduardo and the other doctors in that room recognized how unbelievable precious each of those kisses were. I wish I could have stopped time. I wish I could have spent all of eternity in that fluorescent lit room with my honey-girl kissing me, looking at me with complete love. Those moments were like glimpses of Heaven.

At one point, Nina became especially tired and she gestured to lie down on the bed. By now she had stopped talking. If I had something that she really wanted, like chocolate milk, I could maybe get a word or two out of her. Otherwise, she was silent. For those of you who know Nina understand how horrible this is. Nina is a constant talker. Somehow she is able to fill every bit of silence with words. In fact, on many a car trip, Teddy would turn to Nina and ask in a completely exasperated voice, “Could you just please stop talking for one minute?” My husband and I would always crack up at these exchanges. Then, he was right…her constant verbosity was exhausting. Now…I would give anything to hear her relentless chatter!! Interesting how the things we complain about are often the first things we miss when we are struck by disaster. I’m not sure why that is. Perhaps because the things we complain about are so commonplace, their absence is easily recognizable. Whatever the reason, I would have paid any price to have my child throw a big fat tantrum in front of all of those famous people! Alas, she didn’t. She was silent. Then she was sleepy and lay down her sweet head to nap. But first she kissed me once more! Precious honey-girl!

Once Nina was asleep, the doctors asked if I could meet with them privately in another room. The Marbans stayed with Nina as she slept. Dr. Brennan, along with the rest of the Cedars doctors, accompanied me to a small, quiet room a few doors down the hallway. There they showed me the MRI films for the first time. I love shows like CSI, ER, House, and Fringe. I love the way the characters have to search through mazes in order to find the solutions or culprits. As I starred at the MRI images of my daughter’s brain, I did not see a solution. I did not hear a solution. All I saw was the culprit! All I heard was the culprit! All I tasted was the culprit! Standing before me, in a tiny imagine, obtained from a machine beyond my Azorean grandparent’s wildest imagination, stood my daughter’s killer. How many parents can say that they have been face to face with their child’s killer? This is not a club I ever wanted to be a part of. It is cruel! I was living my very own private hell!

The doctors explained to me what a DPIG was, how little information is known about these extremely rare brain tumors. They showed me were the necrotic center was and how the tentacles of this monster were infused throughout my child’s brainstem. They showed me how the Pons were swollen, which had caused the symptoms I had noticed. In essence, they explained to me as lovingly as possible that my child had the worst possible brain tumor on the face of the earth…her tumor was in Central Command, in HQ…the part of the brain responsible for breathing, motor functions, heart beating…

Each of those doctors watched me like a hawk. Waiting, worried, expecting me to crack. It didn’t feel real. How could it be?? DPIG is rare, therefore my child could not possibly have it…that’s the beauty of rare things…they don’t happen to you, they happen to someone else. I felt myself getting hotter. Then I heard them explain that it was impossible to do a brain biopsy and that surgery was out of the question. I distinctively remember looking at the MRI images then at the tile floor for a long time. I picked up my head and thanked them for stopping everything they were doing and for squeezing us in. I told them that my husband and I were grateful for the generosity they were showing us. Then I told them how much we loved our honey-girl and how terribly we NEEDED a MIRACLE!

Then it happened…the tidal wave returned. This time it wasn’t just searing heat covered by glass shards. This time it was all consuming fire, burning me alive from within. My daughter and I are so similar. I see so much of myself in her, especially her verbosity. Even in my anguish, I couldn’t stop talking. I begged. I explained how much it hurt, as if it weren’t obvious by the drowning woman in front of them. Between sobs I told them that I didn’t want to be selfish…that if I didn’t get the miracle I WANTED so desperately…that if my miracle was that we had her for almost 6 years that I was ready to hand her over to Christ…that I wasn’t angry….just heartbroken…..but willing to give her back to our Maker if that was her destiny…but ALL I asked of them was to help her not suffer!!!! The thought of my child dying was suffocating but the thought of causing my child undue pain was beyond measure or explanation!!!!

Darkness then began to swallow me up whole. I was sitting in a perfectly it room with 6 other people, but darkness wrapped itself around my legs and slithered its way up my body like a giant python. No one else was being swallowed, just me. I literally felt myself fall deeper and deeper into the unending abyss that misery is…then God pulled me out in the most unusual of ways…laughter. Throughout this entire ordeal, I have been constantly surprised at how God uses laughter and outright absurdity to remind our souls that life itself is a blessing.

At the single worst moment of my ENTIRE life, I was given a brief reprieve from falling into my own canyon of despair. As I sat their sobbing in front of total strangers, one of the doctors gently patted my shoulder, trying to console me and said, “Katherine, we want you to know that we are here to support you.” I vividly remembering thinking in-between convulsing sobs, 'Did he really just call me Katherine??' I was sure that my ears, covered in pain, must not be working. Then he proceeded to say, “Katherine, we are all here to help Nina in whatever way possible.” I just started laughing!

In the poor guy’s defense, it has to be the absolute worst job in the world to tell a parent their child is dying. I was freaking out, really freaking out, and the poor guy was probably all stressed out and wanted to help. The beauty of his calling me by the wrong name was that it did HELP! Immensely! I started to laugh, and as I looked up, I noticed how the other doctors were all staring at me, hoping I hadn’t noticed that he called me by the wrong name and also probably hoping that I wasn’t have a total mental breakdown and laughing psychotically. I looked at the kind doctor, wiped my snotty nose, and tried to control my laughter, “My name isn’t Katherine…it’s Rosy!” The poor man’s face went white. He began to apologize profusely but I cut him off and thanked him for the levity because it had pulled me out of a very scary abyss. Poor man! I’m sure he felt awful but I’m thankful he called Katherine because it broke the trance I was falling deeper into.

Just then, one of my best friends arrived. Yvonne and I went through graduate school together. We were in the exact same cohort and wrote the grant on early ASD screening and diagnosis that introduced us to Dr. Brennan 10 years ago. We both had two children, all around the same age. We vacationed together, spent holidays together, and supported each other through good and bad times. Our children were practically siblings. As soon as she saw me, she enveloped me into the most peaceful and comforting of hugs, the kind that only a long-time best friend can provide. We looked at each other and cried.

I thanked everyone for their time and help and explained that I needed to go outside and make some calls. The doctors ensured me that Nina would be taken upstairs with the Marbans and have IV fluids and steroids started to combat some of the swelling. Yvonne held my hand as we walked through the Cancer Center. We just cried. We were too young and more importantly our children were too young to have to go through this!! We made our way to the front entrance where I pulled out my phone and tried to think who I should call. I only had a few minutes and I needed to be organized because I needed to return to my Nina.

By now, it was dinner time. I knew I couldn't call Todd because he was with Teddy and his father eating burgers at Kahuna Grill. I knew both of our families needed to know...so I decided to first call my brother Bruno and then Todd's cousin Shelly.

Bruno picked up as soon as I called. My brother is almost 4.5 years younger and was a total rascal growing up. As kids, we didn’t get along very well but as adults we had become the best of friends. As I heard his voice, I was seized by renewed grief at the thought that Teddy and Nina would never have the gift of adulthood together. I asked him and my sister-in-law to put me on speaker phone and listen to me carefully. I took a deep breath and explained that I needed them to promise me something first before I told them what was going on. They immediately agreed and I demanded that they promise me that they wouldn’t allow their hearts to harden towards God. I begged them to try to love Jesus, as Nina did, and pray as loudly as they could. They sobbed, hearing my pain, and promised. Then I screamed!!!! I screamed!!! I screamed!!! The fear in my brother’s trembling voice made me scream even louder!!! Then I stopped screaming. The three of us, divided by hundreds of miles, repeated “I love you!” over and over. We made the plan that my brother would go to my parent’s house at 9pm where I’d call in and tell them the news. Time was of the essence and I needed to get going.

I quickly then called Todd’s cousin Shelly. Shelly is the steadiest of friends , with a boisterous personality and contagious laugh. Unfortunately, I only seem to call Shelly when I’m grief stricken, like when my brother-in-law got divorced. I’m not really sure why she keeps picking up my calls because they are only bad news. I intend to change this pattern as soon as possible (although I’m not sure when that will ever happen now!). As I quickly told Shelly what had transpired, I asked her to call the entire family and have everyone they knew start praying for a miracle. Our Nina needed a miracle and I was determined before this was all said and done with that God’s ears would be ringing with cries for mercy and grace. Shelly ensured me she was on the job and we prayed together before hanging up.

I put my phone away, wiped away the tears that stained my face, and commanded myself to pull it together. I had no choice. My daughter needed me. Our honey-girl needed me to be strong…no not just strong…steel! I could be steel!! Portuguese women are work horses and Nina and I come from a long line of thorough-breed work horses! All of my years working psychotically hard (home and professionally) had been preparing me for this moment. Like my boy Teddy, I never met a fight/obstacle that I didn’t think I could win. God had given me the most obstinate and tenacious of personalities precisely because my children would need a mom like that. It’s amazing how we travel through our lives wondering why certain things happen, why we meet certain people, why certain doors are opened and others closed, why we are the way we are. On perfectly benign days it is hard to see how all of the dots connect, but when you are in the eye of the storm it is painfully obvious….it all goes together beautifully! I was like one of those damn 1,000 piece puzzles that look really cool (I am NOT vain!) but impossible to ever put together. Well…right before my very own eyes, my life was coming together, all of the puzzle pieces were finally fitting! Praise God!

I walked back into Cedars and started tackling one task at a time: stupid applications (how many papers is it necessary to sign), scheduling phone conferences for later that evening with my family members, meeting with doctors to discuss treatment options, and most important of all, make sure my Nina was being taken care of. By the time I finished all of the paperwork, Nina was comfortably settled in the PICU. She was being showered by tons of gifts but my entrance made her smile the most! What an amazing feeling! “Mama” she whispered. We kissed and I grabbed another wash cloth to wipe away her drool. She took the wash cloth and proceeded to bite it ritualistically. The mouthing behaviors were particularly hard to witness because they were so painfully degenerative. My child never mouthed objects but now she constantly did. Some of the doctors had asked if I thought it was Pica but it wasn’t. It was simply a self-stimulatory behavior. I was used to self-stimulatory behaviors because of my work with kids with autism. However, none of my training could prepare me for the pangs I’d feel each time my previously healthy girl would stim!

By this time it was past 6pm. I had a few hours before I’d have to speak to my husband and parents. Doctors and more doctors came in and introduced themselves. All of them lovingly comforting, assuring me they were committed to helping. All of them also had really hard names to remember! I have pretty good memory but by the time 8pm rolled around and I had met the 100th doctor I could barely even remember how to spell my own last name. Sweet Dr. Brennan wrote me a cheat sheet so I could remember who was who and I secretly placed it in my back pocket. During all of these visits, Nina remained calm, albeit unresponsive. The most animated she became was when it took two nurses 4 tries to get her IV in. I guess animated is totally the wrong word…it was furious! She was so strong it took me and my friend Yvonne, along with a nurse to hold her down. My boss Lynn Koegel practically performed acrobatics while trying to distract Nina with her performances. Nina was pissed and I couldn’t blame her. Apparently, her veins easily collapsed! I finally suggested that they try the hand the SB Cottage folks had used. They did and it worked. I heard them say, “Let’s write down that she needs a baby syringe, #24, no tourniquet.” In my mind, I methodically repeated “Baby syringe, #24, no tourniquet. Baby syringe, #24, no tourniquet. Baby syringe, #24, no tourniquet.” My child had bruises across her hands. It was my responsibility to protect her from pain as much as possible. I would be damned if I forgot a thing! “Baby syringe, #24, no tourniquet. Baby syringe, #24, no tourniquet. Baby syringe, #24, no tourniquet.”

Before long, Nina was sleeping. It was time for me to speak with my husband. My friend Yvonne and Lynn would stay with Nina. Dr. Brennan and the Marbans had never left my side unless they were fervently researching clinical trials that Nina could possibly benefit from. How thankful we were for all of their love! As I found a quite place to speak, I remembered how in years past I had joked about how I was determined to make my husband cry. In hindsight, what kind of sick person says shit like that? I guess that nastiness came from feeling weak and I hate feeling weak. Whenever we argued (which was fairly infrequently) I would inevitably cry. Crying to me always indicated weakness and I hated myself for doing so. When we argued, my husband never cried. He just became silent. I resented him for being strong while I was so pathetically weak. Consequently, I had decided I would someday make him cry. What was wrong with me???? Why is that we fall in love, decide to create a family with our soul mate, and then spend years trying to torture each other? Now, I found myself making a call that would actually make my husband cry and I hated myself for it! I wish I could shield him from this pain! I would do anything to make this all go away and NOT make my husband cry. Why are we so cruel to the ones we love the most???

The phone rang and Todd picked up. I had arranged for our friend John to come to our place and hang out in case Teddy woke up. Todd and his dad put me on speaker phone and I proceeded to explain to them everything I had been told. By the grace of God, I said it all calmly. After I finished detailing all of the information, I told my husband I loved him and that we need to persistently pray for a miracle. Then it happened….the thing I had joked about for so many years happened….my husband began to cry. I wanted to vomit! My husband, the love of my life, was crying. The pain in his voice as he talked about the miracle our honey-girl was, was excruciating!! Even though we were 2 hours away from each other, Todd and I had never been closer then at that precise moment. Our pain for our daughter and son reminded us of how deeply we truly loved each other. I had always known what Grace was but now Todd and I were actually feeling it, living it, breathing it! I still wanted to vomit!

It was 11 pm. The Marbans had returned to meet with me and discuss information they had been collecting all day from across the country. Linda heated up some soup for me and insisted that I eat. I was not hungry. She insisted. She won! Eduardo sat down in front of me. Linda told me they wouldn’t update me until I had eaten a bit. She’s a good behaviorist and I obeyed! As I ate, I recalled the first time I had met the Marbans. I remember I was nervous. The Marbans are not ordinary people. They are the 1% of people (so smart and talented) that the rest of us read about in Time magazine or hear about on 20/20. In many ways they are polar opposites. Linda is tiny, Eduardo is towering. Linda is a social butterfly, with the most beautiful and expansive wing span I have ever seen; Eduardo is quiet and reserved. But their differences seem to end there. They are both committed, loving, giving, and generous beyond measure. I have known people for decades that have never demonstrated as much generosity as these two people whom I had known for less than 6 months. As I ate my soup (I’m sure it was delicious but I could no longer taste food), I was warmed by how much love radiated between the two of them. With each glance and tap, it was obvious they cherished each other. I hadn’t always cherished my husband but I did now.

After I had eaten a bit, Eduardo proceeded to tell me that there were approximately 14 clinical trials for DPIG currently being held across the country. Of these, Nina seemed to qualify for 6. Some were in Boston, another in San Fransisco, another in Seattle, another in Pittsburg. He detailed that each of these trials involved radiation plus some type of smart drug. The condition for all of these trials was that you couldn’t have started radiation or any other treatment prior to starting the clinical trial. This meant we would need to postpone radiation here at Cedars until we found out if Nina was a match somewhere, if there was a spot available, and if we could relocate as a family. I was handed some print outs of the clinical trials. I scanned the information. It might as well have been written in another language.

I took another bite of chicken and dumpling soup and then turned to Linda and Eduardo. I explained that Todd and I wanted a miracle!!! We recognized that only God above could give us that miracle. He was soverign in our lives. If He gave us our miracle we would rejoice with all of our strength. If our miracle was that He gave us Nina in the first place, we would still rejoice with all of our strength, albeit heartbroken with sadness. As I cried, I felt the bruises on my heart throb with pain. I explained that we were willing to do whatever it took to give us time together as a family. The only deal breaker was that we didn’t want to do anything that would cause Nina pain, and not bring dignity to her life or to God above. Then I turned to them and said that I needed them to help me with something. I explained that I did not have the time nor the strength for read through all of these clinical trials. I wanted them to please read them and then tell me and Todd what they would do if the little girl in that PICU bed was not Nina but their own child. We all cried!! The famous people I had been so nervous to meet, cried with me. We held each other. My family was so far away but the Marbans were now my family. They agreed to help me and we cried some more. After we collected ourselves, we talked about how good God is and we were pained by the thought of people not believing in God, not receiving the comfort that only comes from above. They walked me to my room and hugged me once more. As we arrived, my other best friend Eileen was waiting for me in Nina’s room. She had literally dropped everything in her life and flown across the country from Boston to be at my side. She hugged me tightly. It felt so good! My family had grown exponentially and I praised God.

As I prepared to climb into bed next to my honey-girl, I texted Dr. B to make sure he was safely on his way home. He was and I thanked him for the extraordinary measures he had gone through that day. He responded, “Your welcome Katherine! Is it Katherine with a K or C?” I replied, “K!” Humor is so healing!

I was about to get into bed when someone knocked on the door. It was Dr. Chuck Simmons, the Chairman of the hospital. He had stopped by to check on us and make sure everything was alright. Every turn this day had been humbling. Now the hospital Chairman was giving me a hug and reassuring me they would do everything possible to help.

I climbed into bed, reached for my Nina’s hand, held it tightly and prayed for a miracle!