Monday, August 30, 2010

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'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!

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