Day 4

Saturday, August 21st
3:30am

By the time I went to bed it was midnight. I was overwhelmed by so many things. I was worried about how Nina would do with taking her meds in the middle of the night. Right before bed, it dawned on me that we could put the pills in a teaspoon of applesauce and by the time she would have to take them they'd be pretty soft. I prayed that my grand scheme would work and that she would comply. This would be essential to our ability to go home.

I was also overwhelmed by an idea my friend Linda had suggested. She had mentioned creating a "Wish List" on the blog, outlining things that people could do to bless our family. I understood what she was saying and in the few days that had already gone by we had received an outpouring of love. The fact of the matter was that I was worried about how people would take such a thing. I was concerned that it might look greedy or even creepy. Of course my friends had discounted my concerns saying that anyone wanting to help would know our hearts...nonetheless I was torn.

Then, at 12:15 in the morning I got a text from our friends Danny and Erika. They said that since they couldn't be there in person with us they wanted to send us their love and had paid for our suite. My mouth dropped. Just as I was contemplating Linda's suggestion, I got my answer from the dearest of friends. I recognized that everyone who loved us was heartbroken and grief-stricken and wanted to, perhaps even needed to, have a helping role. I prayed that God would ease my heart and help me learn to humbly allow others to help. Those of you who know me personally, know that I am slightly controlling and prefer to do things myself. Yet, God was teaching me through this situation that allowing others to help was not a sign of weakness, but perhaps strength. I really wanted to accept this but it was hard!

I don't think either Yvonne, Eileen or I really slept between midnight and 3am. We were all so worried. When my alarm rang at 3am, I practically jumped out of bed. My heart started racing. I went to the bathroom and grabbed the teaspoon of applesauce with the decadron. Eileen helped me prop up Nina and we asked her to take the applesauce. To say she was pissed off is to say it mildly. She looked right at me, gave me the stink eye, and said "NO!" "I want to go to sleep" she cried as she tried to find a spot to lie her head down. I told her she could go back to sleep as soon as she ate the applesauce. She looked at me again, opened her mouth, swallowed, and then crashed back onto the bed! What an angel! Eileen and I looked at each other and both released two huge sighs of relief! This was the little encouragement we needed.

Although Nina easily went back to sleep, I didn't. My mind kept racing. So much had happened in such a short period of time. I found myself praying again and again for a miracle. Not just for a miracle but for THE MIRACLE, for Nina's healing. As I sat in the dark of that hotel room, my heart was stirred and I began to see how our prayers for miracles were already being answered.

First, God had poured strength into my husband and I. Of course we were devastated but we were ready to go home and be in each other's arms. I had been so worried about my husband, but God reminded me that in our weakness there is no fear because His strength is overflowing. My husband's strength was heaven sent and I praised God for it!

Second, even though I was literally walking through the valley of the shadow of death, I was still surrounded by opportunities for happiness and laughter, like my daughter's smile and sassiness. This too was a miracle. Just a few hours ago, I spent time with 5 amazing women as my baby slept in the middle, and we laughed about the absurdities that had happened the last couple of days. How healing the feeling of laughter is! Who could have imagined laughter occurring in the ugliest place on earth! Praise God! 

Third, as I felt the heaviness of creating a wish list I got a text message from our friends Danny and Erika, saying they had paid for our suite! Miracle! I realized that a wish list was not wrong but a vehicle for those who love us to help and participate in the grieving process.

Fourth, I was completely stressed about Nina taking her medication but she had taken it beautifully! Miracle!

Fifth and final, I realized how many people had entered our lives and had blessed us profoundly. My heart swelled with love for my friends, the Marbans, and Dr. Brennan who had all stopped their lives to help us through this disaster. In a world swallowed by so much cruelty, it was nothing less than a miracle that I would have crossed paths with so many living angels! Miracle!

I thank God for each and everyone of these miracles! I am just sad that it took a catastrophe like this to open my eyes!

Saturday, August 21st
9pm

I was finally able to get back to sleep around 5am. We all slept deeply. I woke up again around 8 and met with my friend Jimmy while Nina continued to sleep. In an attempt to delegate some of my tasks and get help, I had asked Jimmy to brainstorm with me ways to support Teddy and the other kids in Nina's life that were going to be deeply impacted by this situation. The reality was that this situation was going to transform Teddy, Nina's cousins, and the children of our family friends who had grown up with Nina. There existed no doubt about that. What doubt did exist, pertained to how best to help the kids through this journey. Jimmy listened. Sometimes that is the best medicine in the world!

After Nina woke up, Eileen and Yvonne took her shopping where she bought some gorgeous purple and white polka-dotted shoes. Nina has always loved shoes! In fact, she has more shoes than I do! What is especially great is that Nina doesn't just love ordinary shoes...she loves wild and funky shoes. Her fashion style is impeccable, edgy, and so much fun. I wish I could take credit for her flair and style but if anyone deserves credit it is both of her grandmothers! They are the fashionistas and she gets her jazz from them:)

Then, while Eileen and Yvonne packed up our stuff, Jimmy and I took Nina to get a smoothie. At this point, Nina was still very ataxic and the steroids caused her to have behavioral ups and downs. When she was "up" she was hyper active. When she was "down" she was sleepy. As we strolled her through the streets of LA it was painfully obvious that to strangers, she was different...something was wrong. Their eyes said it all.

Then as we tried to have her drink her smoothie and eat her Pirate's Booty without incident, I began to feel the stares of pity coming from the strangers walking past us. My heart sank. For the first time in my adult life, I actually understood what if felt like for complete strangers to look at you with pity...and I didn't like it! I don't want pity for my child or for my family. I want love, kindness, and prayer. I have spent the greater part of almost fifteen years working with families who have children with special needs. I consider myself very empathetic and loving but that 15 minute outing at Jamba Juice has taught me more than any classroom, research study, book, or clinical experience ever has. It taught me humility and how powerful the giving heart of another person can be.

As we sat there with Nina literally spasming around, people starring left and right, my face burning with contempt for others pitying my child, I looked at my friend Jimmy. He did not say a word. He didn't need to. His dark brown eyes were simultaneously full of sadness and heartbreak for us, as well as more importantly, full of encouragement and love. In the face of hardship and pain, perfect words aren't necessary. All that is is necessary is encouragement and love!

Since we had arrived at Cedars all Nina had asked for was to 1) go home, 2) donut holes, and 3) scooter. We were on our way home (she was ecstatic!), she had eaten donut holes (bottomless pit!), and about every 30 seconds she would turn to either me, Yvonne or Eileen and in the sweetest voice say, "Scooter!" It was  very clearly a request and she was relentless :) For the past three months she had been talking about how she wanted to "earn" a pink scooter for getting stars (we use token systems with our kids to encourage cooperative and appropriate behavior). Sometimes she'd change her story and say she wanted the scooter from Santa for Christmas (the kid is smart!! she figured it would be easier to get the dang thing from jolly saint nick than to earn 500 stinking stars). I asked my husband to find a location where we could pick up her pink scooter and we found one.

As we made our way through Toys-R-Us, Nina's requests for "scooter" became more frequent and giddy! We hadn't seen her this animated in days. Then she saw it...the holy grail of girl motorized vehicles. It was perfectly pink and so Nina! She climbed on and beamed!!! Then the stock boy ruined my moment by saying that it looked like there was only one left in inventory, which meant it was probably non-existent. I said that I'd be fine with the display, to which he explained that was against the rules! Normally, I'm a very agreeable and amiable kind of person. But the events of the last 72 hours had transformed me. I took a deep breath (did not want to be too harsh) and politely asked if I could speak to him in private. We found a nook in the skateboard aisle and I pulled out the big guns...I explained that my daughter had an inoperable train tumor and had 3-6 months to live. I told him I needed him to find me that scooter or sell me the display. The poor kid went pale!!! He muttered something unintelligible and then said he was going to find the manager :)

The manager came and gave me most managerial of smiles. He was in charge. I repeated my request and he very confidently said that it was against company policy to sell the display model. Now I was getting pissed off! They were going to sell me that damn scooter! I took a second deep breath and told him that my daughter was dying and I needed that scooter, otherwise I needed him to go tell her that it was against company policy to sell her the display, and crush all of her dreams. The manager went pale. Within a few minutes they had miraculously found the last new one in the inventory room. I hated pulling out the mother of all cards, but a mama's gotta do what a mama's gotta do! I should also mention that before we left, we picked up Teddy the most rocking green motorcycle. I was determined that he would not be left out and things would be equal.

I really wish I would have recorded Nina's facial expression when we pulled into our driveway. She was glowing! And her glow seemed to bloom to new heights when she saw her daddy! As soon as she heard his voice, "My honey-girl!" she ran into his arms! Todd was precious. His entire body seemed to relax as soon as he picked up his little girl. I knew at that very moment that we had done the right thing by coming home!! Teddy came barrelling down the road on his bike and gave us all hugs. When he saw the enormous motorcycle box in the back of Yvonne's van we went ballistic! I wish I could have bottled the happiness we all felt at that moment.

Happy in her daddy's arms!

The rest of our late afternoon and evening was like something out of a dream. We were so thankful to be together that it didn't matter what we did. Our amazing neighbors, the Vinealls, helped us assemble the scooter and motorcycle, and within hours the kids were riding their new toys throughout the neighborhood. Nina was so proud. Teddy was showing off. Todd was relieved to have us back home. And I was able to breath better with my family at my side.

Day 3: Part II

Loved by Auntie Yvonne, Auntie Eileen & Mama

Friday, August 20, 2010

At approximately 1:30pm I went to the meeting with Dr. Danialpour to discuss treatment options. The Marbans were there and I'd had a chance to briefly speak with Dr. Brennan earlier in the day. Dr. Fae also joined our meeting.

At this meeting, Dr. Danialpour walked me step-wise through the progress of the disease. As awful I had felt mere moments ago, I felt ready to hear what we would need to be prepared for. I wanted to hear it all, as terrible as it might be. I needed to be prepared! I needed to know how to help my daughter, to help our family. Dr. Danialpour lovingly listened to me, how we would not be doing any clinical trials after all because we wanted to only do what would minimize Nina's pain and bring dignity to her. He had known this earlier in the day, when I thought of him as the Grim Reaper, but he had allowed me to reach this conclusion on my own terms. He commended our strength and reiterated his desire to support us in whatever way we needed. Then, Dr. Danialpour's heart was revealed even further. I must remind everyone that I had probably sent a total of 3 hours with Dr. Danialpour. But in this time, he had seen who I was. I'm either super easy to ready or the man is a genius...let's just say it's the latter.

Anyhow, as we all sat there, talking about how to best help Nina, Dr. Danialpour turned to me and said he needed me to do something for him. He explained there was no hurry and that maybe I'd never reach a place where I could do this, and that was fine by him, but he wanted me to come back at some point and help develop an emotional support program for families and children. I started to cry, quietly. Somehow this man, who I barely met the day before, saw that I was a woman who loved to give and that everything had been taken away from me in less than 48 hours. He somehow knew that I needed a life-line, an anchor, and he threw me one. Now, I don't know if Dr. Danialpour believes in God, nor do I need to, but God's hand was completely visible in what Dr. Danialpour did/said to me. Within a few seconds, everyone in that room was crying. All of those amazing men and women recognized what a Godly thing Dr. Danialpour had done and they were all thankful, no one more than me!

As we sat there, I got the best news I had received in the past two days. Mind you, I had come to accept the fact that my family would need to be torn apart for 6 weeks, while Nina underwent radiation. But then, through the diligent work of Dr. Brennan and Dr. Eduardo, we had come to discover than Nina could be safely treated with excellent care back in Santa Barbara. Praise God!!! Now my family would not have to be torn apart. We could have Nina treated in town and spend the rest of the day at home, where she wanted to be. We could maintain a semblance of normalcy for Teddy. Todd and I could touch each other, cry with each other, laugh with each other, enjoy our family together. Our families and friends could be with us in our home. Praise God!!!

I hugged Dr. Danialpour, Dr. Fae, and the Marbans. I could take my honey-girl home!!

As we walked out of Dr. Danialpour's office, the sun hit my body. It felt warm, good. For the first time in days, I felt relief. How strange to feel relief in the midst of madness.

I wanted to be discharged but I had a few remaining obstacles. The OT/speech people wanted to do a Barium study to see if Nina could safely swallow. The rest of us had seen her eat and knew she was fine but they insisted. I asked if I should call someone to help me prevent his unnecessary evil. Dr. Marban assured me that I could, as Nina's mom, refuse the test. When we returned to the PICU, I found Nina surrounded by friends playing. She had eaten a ton, at one point, pulling on Eileen shirt to pull her in closer for a bite of Eileen's sandwich. That's my girl!!! The nurse came in to pick her up for the Barium study and I explained that I politely refused. She gave me the look...the you don't understand because you are only a mom look and I'm a medical professional...but I told her Dr. Simmons had said I could refuse and that he trusted our judgment. She gave me the oh great....you've got connections look. I actually hadn't talked to Dr. Simmons, Dr. Eduardo had emailed him and Dr. Simmons said I operating within reason. I then turned to our nurse, Cameron, and asked him to help me get my girl discharged. It was time to go home.

I quickly called my husband and asked how things were going. Teddy spoke to me and said he was having a great time with Papa Gordy. We had told Teddy that Nina and I had gone to Boston to work on wedding stuff with Eileen. Teddy said Papa had come over because they needed payback for us leaving without notice. I knew we could not lie to him. As much as I wanted to protect my son, this was something I couldn't protect him from. I asked Todd if we could have another conference call after Teddy went to bed. He agreed and reminded me of how much he loved me. I wish I could have told him that I had found a cure. But I didn't say a word. He needed to have fun with Teddy for the remainder of the day. Time for more sadness would arrive soon enough.

I sat with my friends (Yvonne, Eileen, Lynn, Jenny, Mendy) and told them what had happened. I began to assign tasks. I told them that I didn't like getting help, that I preferred to do things myself (they already knew that!!) but that this was a time in my life I needed help, our family needed help. I told them I had developed a plan in my mind and that I would be delegating things to each of them and that I needed them to work with me, allow us our own pace and path. They agreed, although with heavy hearts.

Some of the wonderful folks at Cedars

Cameron, our nurse, came in and gave me the thumbs up sign!! Everything was ready. I crawled into bed and told Nina we could leave the hospital, that we got to spend the night at a very fancy hotel (Nina loves hotels!). It was as if I'd given the girl her probation papers! Without hesitation, she started to rip off the tape that secured the IV on her hand. The nurse just sat there and smiled. He said he'd never seen a child do such a thing, but then again he had never met my Nina. She was a fighter, the toughest chick I knew and she was showing the entire world right now that she meant business! I thought for sure she would stop at removing the actual IV but she didn't. She pulled it right out, screams and all, and handed it to the nurse!! I was so happy for her, so proud!! It was as if she gave the damn IV, her arch nemesis for the last couple of days, the big fat bird!! She was outta there!!! I felt the same way!

So happy to go to the hotel!

We arrived at the Sophitel around 6:30pm. Nina's eye's lit up when we entered our suite. It was an exquisite room. Nina walked over to the enormous bed and said, "My bed!" I loved hearing her sweet voice. I loved seeing her walk, albeit very unbalanced. I loved seeing her smile, even though it was through tired eyes. Then she walked into the bathroom and practically yelped with excitement. There she found the largest bathtub ever, with a tv built right into the wall. She looked at me, pointed to the tub and said, "Bathtub!" I knew exactly what she wanted. I sat down right in front of her and hugged her tightly. She wanted a bubble-bath with me and she would have it! She would have every delight her heart desired. If our destiny was to have her for a short time, then we would revel in every moment, making each as happy as possible. Yvonne started the water, poured in the bubbles. I found Hannah Montana on the television and she and I jumped into the tub. I have never been happier to hold my honey-girl. We laughed, played with the bubbles, and held each other. It was the best moment I could have ever imagined!

The rest of the evening was wonderful. How strange to use that word to describe what otherwise was the most disastrous 48 hours of my life. We went to CVS to pick up Nina's medicine. Never would I have imagined that walking through a CVS would bring me comfort, but it did because it was normal. It wasn't a hospital or a room full of scary equipment. It was something ordinary. How we discount the ordinary until it is too late.

The pharmacist asked me why we needed so many steroids. I said it was for my daughter. I knew she wasn't going to stop there. She was just that kind of lady. She asked how old my daugther was and when I replied 5 she quickly asked what was going on. I realized then that this was going to be my life now. A series of questions all leading to the what I didn't want to say. When I told her what was wrong, she started crying instantaneously and literally reached over the counter and hugged me, practically pulling me into the other side. My life, as I knew it, was over. I just prayed that God would give me strength to do what needed to be done!

Later that evening, we had CPK with Larisa and Katie. It was hard to see every one watch Nina with lamentation. They all loved her dearly and were grieving right along with us.  Nina ate a ton. She was so happy to be out of the hospital. Once we she fell asleep, we all sat on the bed surrounding her, reliving the absurd moments of the last two days and brainstorming next steps. How good it felt to be surrounded by people who loved us!

I ended my evening the same way I did the previous night, by speaking to my husband. I was awe struck by Todd's quietness. He confessed that he had carried a heavy heart all day long and had expected to hear what I said. He agreed that the best thing was to come home. He wanted his girls home and his girls needed him more than ever! We needed to be together as a family! Gordy prayed over us and we said goodnight. Although we recognized that things would never be the same, soon we would be back together and that was good enough!

All cozy after a warm bath!

Day 3: Part I

The strongest girl in the world!

Friday, August 20, 2010

I woke up at 3 am. I couldn't sleep. All night long I kept hearing a violin playing. But there wasn't any music playing. I accepted the fact that my mind must be fracturing  into different segments...made sense given the present circumstances! I sat up and prayed. Then I began texting like a maniac to everyone I knew. I asked that every Christian, Jew, Muslim, Agnostic, Atheist please pray for a miracle for our little girl! I bet I freaked out several people, when they got this message at 3:30 in the morning. Oh, well!

Then around 5 am a resident came in and turned on all the lights. Mama bear sat right up asked what she was doing? The doctor coldly replied that she need to check Nina's vitals and see how she was doing. I suggested she turn off the lights and use the flashlight like the nurse had done ALL night long. The woman (yes this was a female doctor...not sure why I'd expect a female doctor to have more compassion than a male...perhaps because she has a womb!!!!). The doctor snottily retorted that she couldn't do that. I raised my voice just slightly (I've always maintained decorum...just flashed my mama bear growl ever so slightly when necessary) and explained that Nina hadn't slept soundly in over 2 weeks and had been perfectly asleep for the last 6.5 hours. The doctor actually had the audacity to ask me what she should do...I replied, "Come back later!" She turned off the light and left, but didn't close the door all the way. JERK!!

I got up and quietly shut the door. Why is it that people go into helping professions who don't really want to help the actual human, even if that means using a damn flashlight while examining a 5 year old with a ticking time bomb in her head? I understand that we all have bad days, but as I tell my staff, I don't care what is going on in your personal lives...when you walk into that family's home all that matters is that child with autism and their family. Everything else stops! The same should apply to medical professionals...in fact...the same should apply to all professionals, even if you are a Starbucks barista! I don't care if you just flunked an exam...give me my damn coffee with a smile!

I crawled back into bed and kissed Nina's forehead. I took a deep, deep breath of her, trying to memorize her smell. Then that's when I noticed it. She smelt like apricots. Tears immediately came rolling down. She hadn't smelled like apricots since she was 9 months old. When Nina was first born and placed onto my chest I clearly remember thinking she smelt like apricots. Teddy had smelled like cookies at birth but Nina like apricots. Now, my 5 year old girl was smelling like apricots again. I kissed her cheek, her arm, and her delicate hand. Each part of her smelled like apricots. My girl was my baby again. I cannot explain what a strange feeling that was, but somehow it comforted me!

Around 8am, I sneaked out of the room and called our elementary school. I asked to speak to Mrs. Knight, the principal, but since she wasn't in I told Patty (her admin assistant) what was going on. I begged them to please help Teddy have a great year and make sure that for the first week of school he was protected. I needed him to have a good first week. I couldn't have my son crippled by anxiety while I was dealing with the beginning of this. Kellogg has been such a blessing. They have supported us in every possible way. It is good to feel secure that Teddy is surrounded by a community that loves him so dearly.

Nina slept until almost 8:45 that morning. She woke up in a beautiful mood. Her drooling, which had been continuous the day before, had practically subsided. She was smiling and answered more readily, although nothing like Wednesday and nothing like baseline. Dr. Danielpour came by and was very happy to see her progress. When I updated him on my interest in looking into clinical trials, and consequently delaying radiation until we made a final decision on Tuesday, he wasn't too enthusiastic. Don't get me wrong. He wasn't grouchy or condescending. Just reticent and suggested that we shouldn't delay the start of radiation for more than a week. I remember being annoyed at him for not being more excited about a clinical trial that might give my child an extra two years. I even called him the Grim Reaper in my head...but then again, I wasn't privy to the fact that Dr. Danialpour had done all of his homework and knew something I didn't. The great thing about Dr. Danialpour is that he didn't argue or try to talk me out of any considerations. He just let me be and find my own way to the inevitable conclusions. That is the sign of a gifted doctor. I bet he wouldn't have turned on the lights at 5am!

Dr. Fae came by and spoke to me at length, also happy to see how well Nina had responded to the steroids. Dr. Behrooz stopped in with a gift...some activities for Nina to do while we prepared her to make the radiation mask. Again, I was touched by the kindness of these complete strangers. These doctors got it! To them Nina wasn't just another chart or brain tumor, she was an angel, loved by hundreds!

Around 9:30 Nina asked to go for a walk. Her ataxia had greatly improved. We walked over the the 4th floor and played in the playroom. The speech and OT folks came by and assessed her while she played. All along she kept reminding us that she was hungry and thirsty! Poor girl. She would have to wait until at least 1 before she could eat. Today they needed to make the mask that would be used for all her radiation treatments. This mask was like something out of a horror movie...like Jason's mask but scarier! Apparently, they'd have to sedate her daily and then place her in this mask that would keep her head completely still while she was radiated. My poor honey-girl!

As we were making our way to the playroom, Linda arrived. She and I spoke briefly and decided that once Nina was sedated for the mask procedure, the three of us would meet to discuss what Eduardo had found out from the P.I.'s (principle investigators) on the clinical trials we had chatted about the night before. We also confirmed that at 1:30pm we would have a family meeting with Dr. Danialpour and Dr. Fae. I asked Linda that she and Eduardo be there and they keep Dr. B in the loop. Linda hugged me tightly. God has designed Linda for many things, one of them is to hug me!

When we returned to the room from our expedition Nina was exhausted. She went potty, climbed into bed, and went to sleep. Jim Stretchberry, our dearest friend and pastor, had driven all the way up from Santa Barbara to pray over Nina. All morning I had been receieving responses to my 3:30am text asking for prayer. It was amazing how every one had responded. People who did not pray were praying! I knew this would be sweet music to God's ears, as it was to mine and Todd's!

Around 11am, our fabulous nurse Cameron, got us a wheelchair and cleverly had me sit on it first. My darling girl climbed into my lap. As she did, I swatted her little tushy making her smile ever so slightly. Todd and I have always loved the junk in her trunk:) Teddy had always been our little guy. From birth, Nina had always been in the 90th percentile for height and weight. She was our amazon! We really didn't know where she came from given that I'm pretty much one of the tallest women in our families and I'm totally average. We secretly hoped that she'd be super tall. I hoped she'd be tall so she could play volleyball and basketball with an advantage. Todd hoped she'd be tall so she wouldn't date in junior or high school since most of the boys would still be shorter! Fathers!!!

We were wheeled through a myriad of hallways and corridors. One of the few suggestions I'd have for Cedars (trust me, my entire experience was wonderful...as wonderful as such events can be made) is to have things prepared so that children don't have to wait very long. A wait of more than 15 minutes is too much in my opinion, it just breeds worry for small ones. Also, avoid taking children into rooms where there are large machines or sterile looking equipment. This stuff freaks them out! The things I learned this day really helped me coordinate with the radiation staff in SB and help make her experience as benign as possible.

By the time we got wheeled into the imaging room where they'd be making the mask and taking the scans, Nina was coming unglued. This was the most scared she'd been the entire time. She kept looking at me with pleading eyes, asking me to go home. Each of those looks are permanently sealed in my mind, like tattoos inked into my frontal lobe. When I think of those looks the front of my head actually pangs!!! It didn't help matters that it took forever for the doctors to figure out how much sedative to give her. I'm not criticizing, I understand these things are delicate, but it hurts nonetheless! Finally, the anesthesiologist came over and inject some sedative and within a second she was out. I placed her onto the table and walked out to join the Marbans in an ajoining room.

As we searched for a spot to sit, I could tell they had bad news for me. Eduardo's eyes were dark, like a massive storm had settled in them and we were just awaiting the torrential downpour. Eduardo scooted his chair closer to mind and reminded me what I had asked of the the previous night...to make the calls, digest the material, pray about the options, but tell me what they'd do if it was their child. As gently as possible, Eduardo explained that he had directly spoken to the main P.I.s and that the clinical trials had very little success, that any additional time the extra treatment provided was maybe 3-6 months and that those months would be excruciating! I don't really remember what else he said. I just fell to my knees on that cold, hard linoleum and cried. Linda and Eduardo just held me. I sobbed, I screamed. Then I asked if Nina could hear me and they assured me no, that she was peacefully asleep.

I had been presented with two doors to death to carry my child through. One gave me a little bit of time. The other maybe gave me more time, but with added pain. The choice was obvious but it is a choice that NO parent should ever have to make. It is beyond inhumane to give birth to a beloved and then 5 short years later be asked to choose a path to death.

I was suffocating!!! I was drowning!!! I was on fire!!! I was being torn apart, fiber by fiber, limb by limb. I needed to get outside!! I asked Linda to find my friend Yvonne so she could be with Nina when she woke up. I turned to Eduardo and begged to go outside, that if I didn't get there quickly I would start screaming. He pointed toward a hallway but before he could give me more instruction I started to run. I saw a doctor, Dr. Behrooz, and tried not to scream that I needed to get outside, but I scared him shit-less nonetheless. He graciously escorted me to the elevator, which I would have never found on my own. As I tried to contain myself from screaming in the elevator, the poor doctor tried to comfort me, but what can you say to a mother whose life has been shattered. I felt bad for him and as soon as the elevator doors opened, I ran. I ran through the lobby, seeing the startled look coming from the security guard and the fear from other people sitting on the lobby benches filling out paperwork...I hoped their fate would not be like mine. Then I opened the front doors.....

I screamed!!! The most violent of screams!!! I am a pretty guarded person when it comes to my emotions. I generally cry in secret when I am upset, usually in the shower, because I don't want anyone to know. But now I did not care. I wanted to the entire world, at least the surrounding portions of Beverly Hills/LA to know the horror inflicted upon me. I did not know I was capable of such screams. They did not sound like me. They sounded like a wounded, wild animal. I SCREAMED!!!!!! My entire body shook violently. I wandered through the streets surrounding Cedars screaming like a f-ing mad woman!!!! In all of this, I was not mad, not angry at God....just sad, heartbroken....but those words don't do justice what I was feeling. I will need to create a new word!

I screamed some more!! I noticed people jumping, jerking as I did so. Horrified. Then I'd see them look behind me. As I mentioned earlier, I've had several moments in the last couple of days where I felt like I was having an out-of-body experience or like my mind had fractured into two separate segments. I describe this because in the midst of this grief, somehow a part of me saw the humor of me freaking the crap out of total strangers through my violent screams. Those of you who know me well, know that there is a part of me that is a bit sadistic. Well, God have me that tid-bit of naughtiness for this moment. Somehow it brought me comfort, as sick as it sounds, to see tall beautiful people strutting their stuff in their over-the-top expensive clothes jump as I screamed by them!!! Hopefully I made them think, even if for a split second, about something more than their Jimmy Choo shoes or their Prada sunglasses. What I hadn't realized is that my friend Linda had been walking behind me, assuring people to leave me alone and not call the cops. Thank you Linda!

Then my screams started to slow down and I could breath a bit more. I found myself crying on Linda's lap. She just stroked my hair, praying over me, almost like a lullaby. Then, just like the rainbow after the storm, God gave me probably the most powerful bit of insight I have ever experienced. I sat up and told Linda that it could have been worse....that we could have lost her instantaneously, like people we knew who'd lost their child to drowning or a car accident. But we didn't lose her instantaneously. We had some time and we were thankful! We were thankful for the time we had, no matter how long or how short!

I wiped my tears and Linda asked if I was ready to go meet with Dr. Danialpour and the rest of the team. I said I was, and so we did.

Thankful for time! Praying for a miracle!

Pain

Pain is an inevitable part of life but it usually comes in small dosages across our life span. I have been consumed by pain for the past week of my life. This pain has been constant and all consuming. I thought that the news we received about Nina last Thursday was the most painful experience of my life. But the pain I lived when our son, Teddy, found out that his sister is extremely sick practically destroyed me.

Immediately after we found out, Todd and I decided that we would follow Teddy's lead and answer his questions honestly and thoughtfully. Teddy's biggest fear in life was that we would die. We were beyond worried about how this would shape and impact our anxious boy. We prayed for wisdom and guidance, but nothing could have prepared us for what transpired.

When we returned to Santa Barbara from Cedars on Saturday the 21st, Teddy was his usual happy self riding his bike and playing with our neighbors, Katie and Cami. That night he was so busy that he didn't spend much time with Nina. By Sunday afternoon, he had noticed how fatigued she was. That evening when we were sitting on the couch relaxing, he asked if Nina was sick and I replied yes. He then added that he didn't want to share his applesauce with her because he didn't want to catch her germs. I explained that he couldn't get sick from her and he ended the conversation.

On Monday morning the 22nd as we were getting ready for school, he asked where Nina was. I explained that she wasn't going to school because she was sick. He asked if she would go the next day and I said I didn't know. Later that evening he and Todd read a book together. During prayer, he spontaneously asked God to help Nina feel better. After he said amen, he turned to Todd and asked him if Nina would be normal again. Todd said he didn't know. This made Teddy panic and he frantically asked why didn't he know. Todd beautifully replied that the doctors were trying to help. Teddy started to cry and said he was worried about his sister. Tod's heart as a father never shined more. He turned to Teddy, hugged him and said it was okay to be worried. They cuddled and our son finally fell asleep.

Tuesday came and went without much discussion. At this point, Nina was back in the hospital because she was dehydrated. Thank goodness for childhood activity. Teddy was so excited to be playing with his friends and new motorcycle that he didn't inquire about Nina until bedtime. I explained that Nina was with Eileen (but decided to omit at the hospital part since it was bedtime; we would cross that bridge tomorrow). He complained that it wasn't fair that she got to stay up late and he need to go to bed early. Oh the innocence of childhood!

On Wednesday afternoon, I picked up Teddy from school. As we drove he told me how he liked his 2nd grade teacher but quipped about how many worksheets they had to do on a daily basis. He then turned to me, with those stunning blue eyes and asked me where Nina was. I had been praying for wisdom and grace for the last week. God listened.

Teddy:  Where's Nina?

Rosy:  Actually, I'm glad you asked. (We had just parked in front of Bennet's Educational Store in the Magnolia Shopping Center). That's why we are here.

Teddy: I remember this place.

Rosy:  I thought it might be nice for us to pick a toy to cheer up Nina.

Teddy: Why? (beginning to look worried. How I have memorized each level of concern on that boy's face over the course of his almost 8 years of life!)

Rosy: Well honey, (I sat closer to him), I'm going to tell you something but I need you to be brave.

Teddy: (Shook his head yes but said nothing)

Rosy: Nina is at the hospital getting some medicine and I thought it would make her happy if we brought her a surprise.

Teddy: She's in the HOSPITAL!!! (panic beginning). Why is she in the hospital? Is she going to be alright. Tell me she is going to be alright? What is wrong with her???

Rosy: Well, honey the doctors are giving her medicine to feel better. Remember how she's had a hard time walking and not drooling, and has had a hard time having energy. Well the doctors are helping her to feel better with those things.

Teddy: But she's going to be normal again, right?

Rosy: I'm not sure honey. We are all praying.

Teddy: What do you mean???? (Now crying!) You mean she could not be normal forever???

Rosy: Yes.

Teddy: What??? Not my sister! She's the most important person in the world to me!!! (Wailing!!)

Rosy: Come here honey. (I held him and hugged him. He pulled away and wiped his tears)

Teddy: So is there a tiny chance she go not be normal again or a big chance?

Rosy: A very big chance!

Teddy: Not my sister!! I love her soo much!! Oh, God not my sister!

(We hugged for a long time! I was crying too! As I write this down, the bruises on my heart are throbbing psychotically!)

Rosy: Teddy, it's okay to cry. It's okay to be worried. We all love her and everyone is working hard to help her.

Teddy: (Wiping his tears). Okay...let's go get her a super surprise. She can have whatever she wants!

(We walked through the store. Teddy asked for the girl section and immediately made his choices. He picked an enormous stuff pug and white tiger. Then he found two penguins and two mice. I made his pick a lego set for himself although he declined. I insisted. He explained how he is now into Power Miners and picked a box. We proudly carried the stuffed creatures back into the car. Immediately upon buckling, he  turned to me and said......)

Teddy: Okay mom, you can tell me the truth. What is wrong with Nina? I can handle it!! (Said this with extreme authority and confidence).

Rosy: Are you sure you want to hear the truth?

Teddy: Yes! Tell me!

Rosy: (I reached over and grabbed his tiny hand) Well, the truth is that there is a part of Nina's brain that isn't working right.

Teddy: Not my sister!!!! (This was followed by about 3 minutes of wailing and screaming and pleading with God! I don't know how I didn't vomit! It was complete and total Grace!)

Rosy: Everyone is working hard to help Teddy. All we can do is pray and love on her!

Teddy: This is terrible! (Crying more)

Rosy: It's okay to cry honey. I've been crying a lot too, so has Daddy. It's okay to be sad. (We just held each other).

Teddy: Okay...(wiping tears)...I wan to go see her.

(We started to drive. About 2 minutes later he started to hyperventilate.)

Teddy: I can't resist it any more. My heart feels like it is going to pop!

Rosy: Don't resist it honey. Just let it out! You need to let it out.

Teddy: (Wailed!!!!)

(I just held his hand and kept driving. Then he turned to me and said, eyes blood shot and already swollen, freckled nose that I love so much red from grief....)

Teddy: Mom, mom can you please pull over. We need to pray (then his tiny lips quivered) we need to pray for a miracle!!!

(I have been avoiding writing this entry for a couple of days because I can't resist but cry when I remember. My precious boy demonstrated and experienced every ounce of pain and grief that we had as adults. But in the biggest shock of his life, where did he want to go....pray to God above!!! Perhaps Todd and I had done a decent job parenting him after all! By now, I was crying non-stop. I pulled over and he grabbed onto me with a ferocity I had never seen before! We prayed. We prayed. Then we wiped our faces and drove to the hospital. When we arrived, he continued with this...).

Teddy: So did you guys find a brain surgeon yet? (How in the world did he know about that???)

Rosy: No honey, they can't do brain surgery for this.

Teddy: Oh. Is she hurting?

Rosy: No. They are giving her medicine. But she is very crabby today b/c she needs to poo. That's why I thought you could bring her a toy. Also, I thought you might like to see the hospital room (He looked at me suspciously).

Teddy: I'm nervous. Will she know who I am?

Rosy: Of course. It's okay to be nervous. Just be your sweet self but remember she might be crabby.

(We went inside and he was so happy to see her. He have her the stuffed animals and encouraged her to name them. She smiled when she saw him. The first smile she had given anyone that day! But she was very lethargic and cranky. Nurses kept walking in and further pissing her off. I explained to Teddy what they were doing; making sure temperature was okay. We explained how the IV worked and he listened carefully. Periodically, he would run his hands over her bare feet and try to get her to play with the toys but she was too tired and to weak).

Teddy: Nina, you want me to do the booty dance??? (He wiggled her bum and she smiled. It was obvious the smile made him feel better).

Teddy: Why is she so tired?

Rosy: Because she didn't sleep much because she needed to poop. You know just like at home when she doesn't poo for a long time she gets super mad.

Teddy: (nodded his head)

(We kissed Nina and Todd goodbye and went outside. We sat on the grass right in front of the hospital. He crawled into my lap and said...)

Teddy: Did the tv cause this?

Rosy: No honey it didn't.

Teddy: Is it because he bonks into things all the time?

Rosy: No it isn't sweetie.

Teddy: Is it an illness, like when Cami had the stomach flu?

Rosy: No honey, you can't catch this. It was just there. You know, like your blue eyes. You were born with them. Nina was born with this in her brain. It's just how it is. We didn't do anything wrong, she didn't do anything wrong. It was there.

Teddy: Do I have it?

Rosy: Don't worry, you don't have it in your brain. It just happened to Nina and we are all going to love her.

Teddy: Well I think she is going to be alright because there were a lot of super smart people in that room.

Rosy: (Smiled and kissed him!) Hey, how did you know about brain surgeons?

Teddy: You know, the movie about the black man, who fixed the babies with the stuck heads. (Then it dawned on me that about a year ago when my in-laws had visited we had watched the Ben Carson Story with Cuba Gooding Jr. We thought he would like it but he kind of drifted back and forth between watching it and playing legos. The details he now described to me let me know he had absorbed everything. What an incredible child!!! By this point, Todd joined us.)

Rosy: Teddy, do you have anymore questions for us?

Teddy: No.

Rosy: Whenever you have questions or you want to talk, just let daddy and me know. Okay? We are a family and we are here for each other!

Teddy: Yes.

(The three of us hugged for a long time. Then Teddy pulled away...)

Teddy: I want to go home (looking at Todd).

Todd: Okay honey, let's go!

(Teddy gave me a gigantic hug and kiss. I reminded him how much I loved him! Then my sweetheart walked off with his father. I sobbed!!! What an incredible boy!!! Just when I thought I couldn't be humbled anymore, here was my almost 8 year old demonstrated more grace and heart than most adults do!!! Praise God!! As I walked back into the hospital my heart hurt deeper. Just when I thought it was impossible to experience any more pain...here it was...deeper, sharper, ever present!)

Precious boy! Perfect face! Tremendous heart!

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!

Character

As parents, we have taken the shaping of our children's character very seriously. About 8 months ago, Teddy and I got into an argument about homework...I wanted him to finish and he wanted to complain. He asked why I was so bossy (Hmm....not sure why he'd ever think that!) and I explained that I wasn't being bossy just being his teacher. Then, with the most confident of 7 year-old faces, he proceeded to explain to me that I was NOT his teacher. Then I, with the most confident of 33 year-old faces retorted, "Oh, yes I am!" (That was a brilliant parental move....argue back...good one Rosy!)

Teddy has met very few battles he does not initially think he can win. He is overly confident (Hmm...not sure where he gets that!!). He is overly confident and he is quick on his feet...but not to quick for me...at least not yet. Anyhow...he immediately replied, "No, you're not. You don't have school stuff so you can't be my teacher!" Boy or boy did I ever want to squeeze that kid at that moment in time. He's got balls!! Who does he think he is?? I have a Ph.D. and I spend all day teaching kids with autism and their families and he's got the nerve to proclaim that I'm not his teacher!?!?! Well...by the grace of God (most of my parenting falls into this category)I pulled it together and explained that in life, there are lots of teachers. Here is how our conversation went:

Rosy: "You're right Teddy, I don't have school stuff so I'm not a school teacher like Ms. Vargas."

Teddy: "Yep!" (Confident rascal!)

Rosy: "But there are lots of different kinds of teachers in life."

Teddy: "What do you mean?"

Rosy: "Well, take Gus...he's your piano teacher, right?"

Teddy: "Ya."

Rosy: "Does Gus have school stuff?"

Teddy: "No!" (Still not getting it)

Rosy: "What kind of stuff does Gus have?"

Teddy: "Piano stuff." (Duh mom!)

Rosy: "Right, he has piano stuff so he is your piano teacher. Now, how about your swim teacher...does he have school stuff or swim stuff?"

Teddy: "Swim stuff." (About to get it)

Rosy: "So he's still your teacher even though he doesn't have school stuff, right?"

Teddy: "Ya...your right." (Now he got it!!)

Rosy: "So daddy and I are you life teachers. We don't have school stuff, we have life stuff and it's our responsibility to teach you to be a man of character who loves God and is kind to every one. Right?"

Teddy: Nods his head and gets back to his homework (Mom-1, Teddy-0...okay I'm not really keeping track)

About half an hour later, Teddy walked up to me, wrapped his skinny arms around my neck and said, "Mom...congratulations on being such a great parent!" He then gave me a big ole smooch and went outside to ride his bike. I was speechless!! (Mom-1, Teddy-1,000,000 and I bet he IS keeping track!)

I love that story! Those of you who know Teddy can totally picture his cute freckled face with his perfect blue eyes having that conversation with me. The stuff that comes out of that kid's mouth is extraordinary!

Anyway, character is very hard to teach. Most of the time, we teach our children character not by what we say, but what we do! It is also true that people's genuine character is revealed in times of crisis. I hadn't really experienced this in my life until now. The depth of some people's generosity has been humbling.

My character is being tested on daily basis, minute by minute and I am struggling! I know that God is carrying me through this, providing me on-going strength, but I feel so weak!!! I HATE, HATE being weak!!!For a second, a split, on Thursday afternoon after I had met with the Cedars team and fully understood my daughter's death sentence, I thought, "Maybe what I should do is load up Todd and the kids into the van and drive off a bridge!" Trust me it was only a split second. Logistically, there really aren't any good bridges in Santa Barbara :) Just kidding!!

Although I joke about my moment of extreme weakness, I praise God for securing my heart in His strength the very next second! No human, irrespective of height, weight, wealth, status, race or creed is strong enough to walk through this storm! I completely submit to that reality. The strength Todd and I have, moment by moment, is completely Heaven sent and enriched by the hundreds of people praying for our family. Please continue to pray for us. Pray that God will give us wisdom and shower us in strength at each precise moment!

A girl can never be too fashionable or silly!

Day 2: Part II

One of the reasons I fell in love with my husband in the first place is because he strives to be a man after God's own heart. I had never met anyone like that, prior to meeting Todd, and I have met very few since.

Todd and I, like all married couples, have had our ups and downs. But never did I imagine that my love, respect, and pride for my husband would grow to its greatest heights during our lowest of points in life. But that is what God does...He uses the awfulness of the human condition to strengthen our resolve, build our character, and shape our hearts.

How many of us when we are saying our vows..."In sickness and health..." ever imagine that sickness could inflict our children, beyond the occasional cold, ear ache, and stomach flu. I know we didn't! It is unnatural! Pure and simple....yet here we are.

I can still feel my husband's strong hand wrapped around mine as we sat with Dr. Brennan and Dr. Wheeler, a mere 200 feet from our dying baby. We wept. We held each other. We prayed. We ached.

As my husband proceeded to go spend time with our sweetness in the PICU, Dr. Brennan and I put the plan into motion. We each made calls, gathered our stuff, and within the hour were ready to head to Cedars Sinai. I asked my father-in-law Gordy(the anchor of the Fredeen family) to come to Santa Barbara immediately because his oldest son needed him in an incomprehensible way. I also called our friend John Becchio, the dearest of friends, and asked him to come to the lobby and to share his strength with my husband as I made my way to Los Angeles with my angel and Dr. Brennan. The team at Cottage was wonderful. They understood the depth of our grief and offered unconditional support.

Prior to our departure, our friends Susan and John arrived. I have always loved our friends, each and everyone of them. But I find that the love I have for our friends has changed. I don't really know how to explain this change, but the genuine love I had has transformed into something much deeper, immeasurable. The only word that can begin to describe it is "agape". When John and Susan wrapped their arms around me, I actually felt relief. I remember thinking to myself..."What a weird thing to feel!" Now I recognize that I felt relief because we were no longer alone. That hug reminded that we were loved by many and that in our hour of greatest need we hand hundreds of hands holdings us up.

Before going back to the PICU to prepare our daughter for the fight of her life, I wrapped myself around my husband's neck. His kiss simultaneously shared his love and heartbreak for our family. My husband is a well-built man, with broad shoulders and very strong arms. He radiates heat and our children love to use him as a jungle gym during the day and then fight over who gets to lie on his "belly-bed" at night. I have never felt so small and helpless as when we hugged that very moment. We had made the painful decision of having him stay in Santa Barbara with our boy Teddy, while I went to Cedars with Nina. As soon as we heard about Nina's diagnosis, we recognized that this would be a battle for both of our children. For Nina, we needed a miracle. For Teddy, we needed to protect his heart and spirit. We knew that we needed to maintain some sense of normalcy for him while we tried to secure the best treatment for our honey girl. Oh Teddy....how we love him!!! I don't know what made us cry more, the catastrophe growing in Nina's brain or the grief this journey would cause our precious son!!! There are no words!!

At precisely 1:30 pm, we loaded the queen of my heart into a wheel chair and made our way out to the hospital entrance, where Dr. Brennan was waiting for us. I recall not hesitating for a second when he had originally offered to drive Nina and me to Cedars Sinai. I had never expected him to do such an incredibly generous and loving act, but when he did my heart practically leapt for joy! It was the first time in 24 hours where I had experienced true, tangible hope. Who does such a thing??? What doctor has ever offered to momentarily leave the comfort of his office and family and take his dying patient and mother through ridiculous traffic and heartache??? I have never heard of such a thing!!! Only a great man whose heart is touched by God is capable of such generosity! As the nurses escorted me to Dr. B's car, one of them took me by the hand and whispered, "In all my 25 years of being a nurse here I have never heard or seen a doctor do such a thing! He is a saint!" She was right...Dr. B is a saint, sent to us as a beacon of light when our world had collapsed into darkness.

We loaded Nina into the car, where I tried to eat some of the wonderful snacks Dr. B's wife had packed...but I was not hungry. Normally, I love to eat, but I have discovered that survival does not require much sustenance. How can I eat when my baby is so sick??? Nina on the other hand, was very happy to eat some turkey, chocolate milk, and a Tiger's Milk bar. I was so happy to do the simplest of activities with her, eating! Why hadn't I appreciated these times more often???? Simply put...I thought I had forever with her, and now I was being robbed of it.

Somehow we did not get stuck in traffic. For those of you living in Southern California, you can appreciate how that in of itself is a small miracle :) During this entire drive, I had been communicating with the Marbans. In the few hours after receiving the diagnosis, Dr. B and the Marbans had assembled the world's best team of neurosurgeons and oncologists. Somehow, these incredible people made time in their ridiculously busy schedules to fit us in. As we got closer to Cedars an overwhelming feeling of humility began to take over me. The thought that complete strangers, highly esteemed in the medical field, would want to help us at a drop of a dime was daunting. I stroked Nina's leg and prayed that they could help me find a miracle.

As soon as we arrived at Cedars, we were met by Linda Marban. Back in Santa Barbara, I had called our friend John to Todd's side, to strengthen him. This time, the friend waiting to share the burden was for me...and how good it felt!

Eduardo and Linda Marban are the rarest of people! They are brilliant, beyond comprehension, and are literally changing the world with their research and hard work. Their accomplishments read like a made-for-tv movie. Yet, what is mind-blowing is not how they have transformed the field of cardiology nor who they know or can have access to. What is mind-blowing is their capacity to love and be generous. The Marbans literally stopped their entire lives to help me search for a cure for my child. Who does such a thing in 2010???? We are a culture of selfishness and we shape our children to think of themselves first and others last. But not the Marbans! They are the living embodiment of Christ's heart. How blessed we are!!

Thankfulness

I am very tired today...it has been a whirlwind. I need to take a nap and I am going to, however, before I do, I wanted to share some thoughts on thankfulness that have been running through my head all day.

Thankfulness is a virtue that all parents try to instill in their children. However, it is one that is especially difficult to cultivate because it goes against most of our natural instincts. That is, it is much easier to be demanding than thankful. I know that Todd and I have worked very hard on training our children to have thankful hearts. Many a time we have felt that we have totally flopped. Both of our families valued thankfulness and passed that onto us as adults.

This morning, as I lay next to Nina while she napped I realized how thankful I was for her stinky breath and the way her lips always pucker up when she sleeps. Todd and I had often laughed about how sweet she is when she sleeps and how much we love her stinky breath in the morning. However, I don't think I ever really thanked God for those things or the million other things she does that are amazing and uniquely her!

My entire perspective on thankfulness has completely changed because of this situation. I find myself thinking about thankfulness more often now than at any other point in my life. I have been blessed beyond measure. My parents came to this country almost 36 years ago with little more than me and a couple of suitcases in their arms. They came to this country because it is the land of opportunity. It is so easy to find ourselves striving for more, yearning for what others have, searching for the next thing instead of cultivating our own thankful hearts. I am not sure why this is happening, nor do I delude myself into thinking I will ever know. God reveals His purpose on His time and I rest my heart in this. However, I do pray that one purpose, irrespective of outcome, is to remind us all of how blessed we are and how much we have to be thankful for!

I am so thankful for my life and all the opportunities I have been given. Believe it or not, I am even thankful for my current situation (not that I wouldn't gladly trade place with my child in a heartbeat). Trust me, just because I am not crying does not mean I am not in chronic pain. In fact, I hope that the pain will never fully subside because it is through this pain that I have become more thankful. I know it sounds weird, but I am thankful that I have an opportunity to
be a part of my child's delivery to Heaven, if that is what God has in store for her. What a privilege, irrespective of the pain, to have time with her. She could have easily been taken from us instantaneously, leaving us with no opportunity to have our eyes truly opened to the miracle that she herself is.

I am so thankful for every freckle on her body. I am thankful for how deeply she laughs when her brother does his bootie dance. I am thankful for how she wraps her delicious thighs around her daddy's legs when she is cuddling with him. I am thankful for her willful spirit. I am thankful for her desire to help, even with the smallest of tasks. I remember how one of her first utterances was, "I help mama!". She would often say that to me as I worked in the kitchen during dinner. She'd tootle over and say those words with her gorgeous smile and chubby cheeks. I am thankful for her hazel eyes, they are mine. I am thankful for her pug nose, it is her daddy's. I am thankful for how she adores her big brother. I am thankful for how she'd try to redirect me when she'd done something wrong. I am thankful for how she loves to kiss....even now!!!

If you have children, savor each and everything inch of their spirit and being. Be thankful.

Lastly, I want to thank everyone for everything they have done for our family. Every step of the way, we have been humbled by the out-pour of love and affection. There are no words to express how comforted we are in knowing that so many people care about our children, are dedicating themselves to prayer, and are willing to sacrifice their time, money, and energy to show us how much we are loved. You know who you are and we thank God for having you in our lives.

Having a blast with cousins!!!

On a hike for my birthday January 2010