Sunday, August 29, 2010

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 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 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 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 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!

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