Thursday, October 21, 2010

Day 52

Friday October 8, 2010

I had a hard time sleeping last night and woke up even earlier than usual. Today was Nina's last radiation treatment and I had a flurry of mixed emotions running through my mind. Part of me was relieved that it would be over, that Nina wouldn't have to fast, that our mornings wouldn't be occupied by hours at the Cancer Center, that she wouldn't be so tired or easy to anger about having everything revolve around treatment, that she wouldn't be worried about others touching her port, and that we would have a bit more freedom. However, another part of me was tormented by concerns about what impact if any radiation had on the tumor, how quickly would Nina remain stable, how quickly would symptoms re-emerge, how long would it take for Teddy to start asking questions about Nina's long-term health, would we get through the holidays, what would life look like now. In essence, the unknown seemed so all consuming, so unfathomable, so uncertain. All of this lead to us living in a permanent state of "What now?"

Originally, Thursday was suppose to be Nina's last day of treatment but because of power issues at the Cancer Center her Wednesday appointment had been canceled and her last appointment moved to today. Normally this wouldn't have been an issue except for the fact that Teddy and I were suppose to be leaving for Boston at Obviously, there was no way in heck that I was going to miss Nina's last day of treatment. I spent a number of hours with United agents and we were finally able to find a flight that had two spots open.....a red eye leaving Santa Barbara tonight at 9pm. We would arrive Saturday morning at 7am and have plenty of time to rest before all of the festivities began.

Teddy was exuberant about leaving for the trip. He tried (repeatedly but to no avail) to convince me that he should stay home from school today. I actually contemplated taking him to a treatment session but after seeing Addie's response (and she is extremely calm and collected, not a bit anxious like Teddy) Todd and I decided that wouldn't be a good plan. Part of the reason I have painstakingly recorded all of these thoughts and experiences, taken so many photos, and video recorded so many events, is because I want Teddy to have this available to him when he is older. God willing, Nina will be the miracle child and if so then she would have this entire experience documented in detail. I want to preserve as much as possible for every one's sake!

Long ago I had decided that I would do something special for Nina on her last day of radiation treatment. The actual details hadn't come together until Nina decided we should have a Fairy theme for Halloween. That is when I decided I would dress up as Queen Clarion, wings and all. Nina and I had always loved playing dress up. For her 5th birthday party, Nina had decided she wanted a princess theme and that I should be the queen. I ended up finding the most exquisite colonial ballgown on Ebay and got completely dressed up on the day of her party. The funnest part was showing up at Nina's preschool in all my queenly glory and seeing her radiant face, full of delight at how silly her mama was! Prior to her actual birthday Nina and I had planned all aspects of the party. She had decided she wanted to invite her 7 best friends from preschool, that everyone should have a princess dress and crown, that we should have a Taco Bell picnic while wearing the princess gowns :), that there should be a manicure, make-up and hair station, that everyone should sit down for a teaparty, and that we should make pink and purple cupcakes. She had every detail planned but never had she imagined that I would show up in full regalia to pick her and her friends up from school! I loved seeing how happy my silliness made her! I knew that at 5 my dressing up as a Queen would be cool, but very quickly it would become embarrassing so I decided to fully take advantage of her enthusiasm. Nina's 5th birthday party was every girl's dream and in retrospect I am so thankful that I did it!!

Princess Nina, Queen Mama, & the Pretty Princesses

Princess Honey-Girl February 23, 2010

The Princess & Her Royal Court

Beauty & the Dada!

So....I decided that today I would be Queen Clarion. As I got all of my accessories together and ironed my fairy dress (another Ebay treasure!) that damn lump began to reemerge in my throat. I have never liked crying....always feel like I lose control when I do so....but these days I cry a ton....daily. I tried to redirect myself by thinking about other things I needed to accomplish before leaving for Boston but nothing seemed to work. However, God's timing is exquisite. Each time I feel fear gaining control over my heart, He intercedes and sends me a bit of hope, laughter, distraction, encouragement...sometimes all in one. As I ironed my dress, my phone buzzed with an incoming text. I looked down and it was my friend Mario checking in about coming by and dropping off Teddy's birthday present. Mario had helped me track down Teddy's gift the night before and had sweetly offered to drop it off in the morning when he wasn't around. Mario has impeccable timing for making me laugh so I was relieved that he was coming by.

A few minutes later, Mario showed up with Teddy's birthday gift and a quart of cotton candy ice cream :) Nina will forever think of him as her Cotton Candy Ice Cream Man....Mario doesn't seem to mind :) Upon seeing me in my Queen Clarion costume Mario burst into laughter and my lump least temporarily.  When Nina saw me in my Queen Clarion costume, she didn't burst into laughter but smiled from ear to ear....beamed with giddiness! She loved it and I was so happy!!! Thankfully, Nina got into the car without a single complaint. Unfortunately, I realized then that we had forgotten to get her stroller out of Todd's car the night before so I called him informing that I was going to quickly stop by. Of course we'd forget her stroller on the last day of was fitting given how insane our lives had turned. We raced down to Santa Barbara Junior High where Nina proudly shouted out through her window, "Mama's Queen Clarion!" I hadn't told Todd either. He was happy for Nina and I could tell he loved seeing the brilliance in her eyes. Nina kissed dada goodbye, we got the stroller and were off.

When we arrived at the Cancer Center, Nina just had a permanent grin on her face. She loved, loved, loved the fanfare the receptionists made when they saw me in all my fairyness! My wings were so wide that I had to slip through the doorway sideways...she found this particularly entertaining! As we rounded the hallway corridor, we heard someone say, "They're coming!" We turned another corner and what did we find but all of the nurses and staff crowded around a beautifully decorated hallway and in unison they shouted, "Surprise!" To our astonishment, they had decorated the entire hallway and the treatment room in white tulle and sparkling lights. Cindy was wearing a Tinkerbell flower and some of the nurses had glittering necklaces. The piece de resistance was a phenomenal table covered with layers upon layers of hand-decorated cupcakes, cakes, chocolate covered strawberries, and cookies. The entire place looked like a bridal shower. Nina gasped an audible, "AHHH!" when she saw the beauty in front of her. The love these women had for her was so thick it was palatable.

Nina surrounded by the amazing staff at the SB Cancer Center

Queen Clarion (wearing her hand-made crown) and our Guardian Angel Cindy

Amazing Decorations!

Treats fit for a Fairy Princess!

Cindy, Nina & Mama....Happy & Blessed!

For 6 weeks, Monday-Friday Nina and I had spent our mornings with these wonderfully generous people. The fact that they had taken the time to demonstrate their love for our daughter in this way was overwhelming to say the least. Nina could not stop smiling and even agreed to take photos. Then Cindy told me she had a gift for me. She pulled something from behind her back and I was left speechless....she had made me a crown to match the one that Queen Clarion had in the Tinkerbell movies. For weeks she had heard Nina and I discuss all the crowns available on-line and how none of them really resembled the crown in the movie. Apparently she and Nina had decided that she would make me one! It was perfect...just like the one in the movie! For what seemed like a very long time I couldn't say anything...I just starred at the crown. Cindy put it on my head and I hugged her tightly....then I started to I did what I always do....ran and hid in the bathroom! I just sat there (not on the toilet....thankfully they have a chair in there!) and cried. I was so thankful for the gifts God continuously provided during this journey but the beauty and amazingness of these gifts sometimes made the pain more piercing!

I composed myself just in time to hear another roll of laughter. I wiped my eyes and went outside to the hallway where I found my dearest friends Crystal and Sharon....all dressed up too!!! Sharon had dressed up as a crazy cowboy and Crystal a pirate! Nina was just grinning from ear to ear! Children are always amused by adults acting silly and there is nothing sillier than a fairy, a cowboy, and a pirate!! After hugging Crystal and Sharon, I found Cindy and gave her a big hug. I thanked her for my crown and explained how much it meant to me. I knew she didn't need those words....she had come to know me very intimately over the course of treatment but I've decided that it is imperative to let people know how important they are to just never know if you'll see them again so why postpone what should be said now!

The Cowboy, The Fairy & The Pirate (sounds like the start to a really bad joke!)

The anesthesiologist came into the room a few minutes later....wearing a crown!!! Amazing!!! Every single person we have met at the Cancer Center has been delightful! Pretty inspiring how cheerful, giving, and enthusiastic everyone is at the center given that they in essence work in a living morgue! I've come to recognize just how incredibly gifted each and every single person here is and I praise God for them!! I pray for only continuous blessings in their lives!!

After all the fanfare simmered down, Nina left for treatment without a single complaint. I imagine it was pretty funny to have me in my fairy attire sitting in front of her and talking to her until she fell asleep! Precious honey-girl!

Although the morning and arrival for treatment went flawlessly, recovery was an entire other story! Once Crystal and Sharon arrived, I asked them to start videotaping the entire morning. This was the last day of treatment and I wanted every second recorded. I don’t know why…I probably won’t ever watch these videos. I guess I just want to have the option…the choice of reliving these events. There is security in knowing that events can be preserved forever, and available for us to hear and see in a way that our memories can never replicate. Well….if preservation of events is what I wanted well I got it today!!! When Nina woke up from sedation my sweet and happy girl had been replaced by a venomous serpent! She screamed and cried like nothing I had ever seen!!! The poor baby was over it!! She had held it together with amazing grace for 6 weeks and it was now all coming out!! I reminded myself of what Dr. Weisenberger had told her…. “Nina don’t let anyone control your emotions!” My heart broke and raced simultaneously. I felt dizzy and overwhelmed because there was nothing I could do to help her. I tried to redirect her and be funny but if just pissed her off even further! Then it happened….she was so angry…shouting that she wanted to go home….trying to rip her way out of the bed. Nothing worked so she did what anyone pushed to their limit would do….she reached for my arm and bit me!!! She latched on and didn’t let go for probably 5 seconds. It hurt like a bloody $%&*#@. Luckily, I have been bit a lot in my professional career so I’ve learned not to respond at all. I just waited until she released a bit then pulled my arm back. I looked at Crystal who was video recording and her mouth was agape! Sharon just flashed me a I’m so sorry but you didn’t respond good for you! look that only another behaviorist could give. Nina screamed and cried for over 20 minutes. It was awful!!! Just awful!!!

Then we had the brilliant idea of asking her if she wanted to sit in her stroller. She nodded in between screeches and within another 3 minutes was completely calm. Why we didn’t think of this earlier I do not know! The remaining 20 minutes of recovery were bliss. She happily watched Tinkerbell, ate cupcakes, drank tea, and took pictures!! In all honesty, I cannot blame her for losing it. She held it together beautifully for 6 weeks….better than most adults would. She had suffered and it all came out! In a way, I wished I could be like her and really let the world know how I felt…how I was torn up inside. Instead of tantrumming, I did what I do best…I waited until Nina was happy with Crystal and Sharon and then I went and hid in the bathroom and sobbed. I sobbed and sobbed. I sobbed because this last treatment marked the end of a stretch of this journey. I had grown comfortable here. Here things seemed stable. Now I didn’t know what would happen…how much time we had left. I sobbed and sobbed wondering if God was listening to our pleas for a miracle. Then my friend Jimmy sent me the following message:

“I know I’m not religious but I pray every night and believe in a higher purpose and reason with all my heart. I don't know why this is happening and why it is so hard. I'm so sorry to hear your pain and I will pray for you.”

I read this message and wept! God was listening to my pleas. He was working miracles all around me, I just wasn't paying close enough attention. He was using Nina to touch people, to call people to Him. Because of Nina, Jimmy’s heart was being softened towards God! He was praying, even going to church! This WAS a miracle! I cried and I praised God!!!

When I came out Cindy found me and gave me another big hug. I started to thank her but then a flood of emotions came out again. Aghhh!!!!! So….back to the bathroom I went and cried some more. I didn’t want Nina to see me upset but it was so hard to contain! Cindy knocked on the door to see if I was okay. I washed my face and came out. She asked me if she could pray for us and I nodded, knowing that if I said another word it would be covered by sobs. Cindy prayed over me…asking the Father of Heaven and Earth to cover our family with grace and peace. As she prayed, I cried and she cried. God knew that we would need Cindy and He gave her to us! Throughout this entire journey God has provided the people that we needed to walk each step with. God’s love and mercy is boundless, endless, and ceaseless!

After Cindy prayed over me, I was able to pull it together. We took one last picture with Nina and hugged our Cindy one last time. Sharon and Crystal walked us to the car and helped us load up. Then Nina and I did what we do best together…shopping! Nina wasn’t in love with the dress I was going to wear to Eileen’s wedding so she and I went to Nordstrom’s where she picked this exquisite gown that I would have never chosen for myself. Apparently Eileen, Nina and Addie thought my wardrobe was too “momish” whatever that means!!! Some of my favorite outfits have been chosen by Addie and Nina so I decided to follow my personal fashionista’s advice and buy the BCBG dress J She was very proud of herself! After shopping we went to Kahuna’s for a hotdog to celebrate. While we ate, Nina turned to me and said, “Mama I’m all done with treatment!” I kissed her pudgy cheeks. She was right! I was happy for her happiness but sad for my sadness!

After our late lunch, we joined Todd and Teddy at home! Teddy was coming unglued with excitement. Nina never said anything but I knew she was disappointed about not going. Earlier in the week, Addie had the brilliant of idea of coming down with her dad and Dan. Dan and Todd’s brother, Joe, had decided the previous weekend that they were going to come down while Teddy and I were in Boston. Brilliant Adelae recognized before any adult that her presence would make the weekend away from me easier for Nina! When she told me her plan we were all like, “Duh!” So Nina was ecstatic herself for Addie’s arrival. We called them to find out where they were and discovered that they’d be arriving at 6pm. Perfect timing! Right before we needed to go.

The four of us had dinner and afterwards I had Nina jump into the tub so she’d be all clean and cozy before Adelae arrived. Just as Nina climbed into the tub…Addie arrived J Nina was deliriously happy! I could have left at that moment and she would have been just fine J Thank God for Adelae!

We finished bath time, loaded the car, and hugged everyone goodbye. Then Todd dropped Teddy and I off at the airport. Teddy was like a puppy…so full of energy and excitement. He rolled his carry-on into the terminal, took his shoes off at the security check point, proudly told the TSA that the Macbook was his and that Dr. Eduardo had given it to him as a present. Excitement does not do justice to the happiness Teddy was experiencing. I was elated to have him all to myself. We had taken a mama-son trip to Boston when Teddy was in kindergarten. During the last 6 weeks I had tried to spend as much time with Teddy as possible but he knew that things were different. They were! I had always taken him to school and picked him up. I had always made his lunch and arranged his play-dates. Now Todd had taken over and it was different! I just hugged my boy and took a ton of pictures with my phone. He had no problem hamming it up for the camera!

Rebel Without A Cause!

Waiting for boarding to start....waiting....and waiting!

Finally on board!

We were suppose to leave Santa Barbara for LAX at 9:05. We had a connecting flight to Boston at 10:30. Around 8:30 the agent came on the loudspeaker and announced that we were experiencing a delay in boarding because of mechanical problems with the airplane. Aghhh!!! 8:45 came and went and nothing. Then finally at 9:15 we boarded. I had a bad feeling that we weren’t going to make it. When we arrived at LAX it was 10:35. We jumped out of the plane and ran down the terminal trying to make it to Gate 71A. We ran like the wind, Teddy pulling his camo suitcase and me yanking my red one. We arrived at Gate 71A at 10:40! We missed our flight by 10 minutes! The agent tried to see if they’d let us on but they were already off on the tarmac!!! Poor Teddy just collapsed on the chairs and asked what would happen repetitively. Given how crazy the past 10 minutes had been it was perfectly acceptable that his anxiety was going through the roof! Eventually we were given tickets for an 8:30am flight the next morning that would put us in Boston by 5pm L At least the wedding was on Sunday! I texted Eileen and told her the bad news. Then I texted our family and friends and said that I thought I should have my own reality show and that it should be called R.O.S.Y (Really Outrageous Shitty Year!). Although everyone laughed it was pretty much a consensus that the name fit! Now I just needed to find a television network that would be interested in recording my demise…shouldn’t be too hard to find in LA!

Missed flight...on our way to the hotel shuttle!

Teddy and I arrived at the LAX Westin by 11:45pm. Teddy loved the hotel! He was impressed by the “beautiful white linens”!!!! What almost 8 year old uses the word “linens”??? Teddy is such an astounding creature! We brushed our teeth and climbed into bed. He wrapped his skinny little legs around mine and asked, “Do you think we’re gonna make it tomorrow mom?” I reassured him that it was going to turn out alright. He yawned and snuggled up closer, allowing me to kiss his perfect lips. Sleep was setting in but before he let it consume him he barely pushed out, “Mom, you got the alarm set?” I laughed and kissed him again! Even at midnight, with the heaviness of sleep encroaching, my little man needed to remind me not to be an airhead! How I love this boy!!! How I thank God for the treasure he is in our lives!!

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