Day 17

Friday, September 3, 2010

Today was popcorn day at the Cancer Center. This most definitely helped reduce Nina's anger by at least 30 seconds :) As soon as she got a whiff of the warm, melted butter and salt flowing through the hallway she started demanding a private portion. Luckily, the procedure went flawlessly and she woke up within 15 minutes.This was the shortest period of recovery thus far and we were so encouraged by it all!!

Once we were done with recovery, Eileen went off to run some errands while Nina and I went to the radiology department to have an x-ray study of her port. Since the port was not drawing well, the entire team wanted to find out what the culprit was and how to solve it. Cindy escorted us to the radiology department and we waited our turn. A darling staff (he couldn't have been more than 25 years old) came out and called out "Nina Fredeen". I motioned at him and he walked up, coordinating his eye gaze between me and Nina. He greeted me and the proceeded to say that it was going to be a problem to take her into the room with us. He asked if I had anyone who could stay with her. I actually laughed! Poor guy! Poor anyone having to deal with me. I'm really like a psycho these days; you never know which side of Rosy you're gonna get!

I hushed my laughter, pulled down the blanket covering Nina and pointed to the port on her chest. His mouth actually dropped. He apologized and I said I was sorry too that it was her and not me. He was actually super sweet and further elucidated his sadness for our situation. I tried to graciously accept his generous remarks and explained why we needed the x-ray study. He took us into a huge, dimly lit room, with a ginormous machine. Nina started to whimper. Then she started to cry! I dropped to the floor so that I was eye level. I asked her if she wanted to go home and wait for her cousins to come. She nodded yes through her tears. Then I pulled out a nasty mommy-card. I told her that she needed to stop crying, lay down on the table very still so we could take a picture of her tummy. I explained that if she could that for me, then her cousins would come. She actually wiped the tears running down her cheeks and let me place her on the cold, steal table without a single complaint.

As soon as she was on the the table, I turned to the cute tech boy and explained that I needed to be able to hold her hand through the entire procedure. By this time, the radiologist had also entered the room and introduced himself to me. He was about to say something to Nina but I cut him off before he could generate the phonemes necessary to produce the word "Hi!" He kind of looked at me with a bewildered face. If I had a buck for every time a doctor or nurse has given me that look I would be close to having enough to pay off my second mortgage! I'm really not a jerk! Generally I'm the epitomy of manners and niceties but Nina is over new people. I think I should make a card that says:

My daughter does not want to talk to anyone new, especially anyone in scrubs. It is not personal! Sorry. Please proceed quickly but accurately! Thanks!

Maybe if I give these cards immediately to someone new I will be saved the looks of bewilderment. It really seems like these poor doctors are not used to demanding, know-it-all mothers. My husband and his brother have always joked that I am the "Ph.D. of the world" because I am so confident in my opinions and directives to others (personally, I just think they say that bc they'd like to just sit on their bums all vacation long and not help me a bit!!!). Well, with Nina I am the "Ph.D. of the world" whether people like it or not!

So...I did what I said I was going to do. I squatted down next to the x-ray table and held Nina's hand. The cute tech boy gave me a lead apron to cover myself with. I don't care what I get exposed to. If Nina has to be exposed to x-rays and radiation, then I can too! If Nina has to be TPA and not eat breakfast after midnight and until she has recovered from sedation, then I will too! If Nina ends up losing any hair, then I will too! I will help my daughter carry every ounce of discomfort and/or pain that she is dragged through. I don't care how it makes others feels or if it is safe for me. My life has been decimated and some toxicity from radiation or xrays is really a minor thing in the grand scheme of things.

At one point while the radiologist was moving the gigantic x-ray over Nina, he quipped, "Hmm...you're kind of in an awkward spot." I was in an awkward spot, on the ground, right next to the pedals he needed to use to control the x-ray machine. Awkward or not I was staying there. He managed. And then we saw the images. The port had a nice kink in it right at the entrance. Additionally, when they flushed, instead of the liquid going in a straight shot, it kind of misted out. The radiologist turned to me and explained that the port would be fine for sedating her but that it could never be used for drawing labs. He explained that they could easily go through her groin and fix it, but I refused. At this point in time, we are not drawing labs enough to warrant fixing the port. The nurses can just collect labs peripherally while she is sedated. If we ever do decide to do chemo, we might need to revisit the issue, but for the time being we are going to remain status-quo.

Throughout the entire 15 minute study, Nina lay perfectly still. No one plays possum like Nina! When we were done, I kissed her precious lips and told her we could go home. She sat right up and reached for her stroller. I have to say that my background and training in special education has been remarkable throughout this entire process. I don't know what things would have been like for us if we weren't behaviorists and knew how to incorporate motivational strategies into every thing we do with Nina. As I have said before, my empathy for the families I work with has intensified to Everest-like proportions! Taking care of a chronically-ill child has changed so much about how I perceive intervention. Bottom line, parents need to be equipped to support their children. If professionals can't help them learn to do so, nothing else will matter or even fall into place!

The rest of the afternoon was spent lounging in the living room and waiting for grandparents and cousins to arrive. Right before my parents arrived around 6pm, Nina reached for me. I cuddled right up next to her and she whispered that she was excited about the zoo party! She wanted to show Adelae (her best friend and cousin in the whole wide world) the penguins and eat cotton candy!!

My parents were delighted to see Nina at home although I believe they were hoping to find her more animated and interactive. The reality was that Nina seldom said anything or interacted with anyone unless she was highly motivated (e.g., needed something). It was hard to see the pain in my parent's eyes! My mom was especially working hard at maintaining her composure. Just a few days earlier, her oldest brother (18 years her senior) had passed away from a long and painful death. She was obviously heartbroken but nothing compared to the pain of seeing your only granddaughter terminally ill! I wished desperately to protect my mother from that pain! But I couldn't protect anyone, even my precious Nina!!!

About another hour later, Todd's parents arrived. Nina was happy to see all of her grandparents and they were delighted to see her and Teddy! Teddy of course did not skip a beat and was performing his many tricks and acts within minutes of each of their arrivals. He was especially delighted to tell them about his new room. As he spoke to each of them, his sparkling blue eyes lit up even more than usually. His cute freckled nose and skinny hands bobbed up and down as he enthusiastically recounted all that they had missed out on :) He has been so amazingly strong! We cannot thank God enough for protecting his heart and spirit!!! It will need constant protection!

Although Nina was happy to see her grandparents, it did not compare to the actual physical enthusiasm (i.e., smiling, sitting up, initiating conversation, initiating hugs) she demonstrated when her cousins arrived at almost 10pm. Nina practically leaped of of bed. She hugged Adelae and told her she was her best friend! Adelae beamed with happiness. Nina planted the sweetest kiss on Sosie's (oldest cousin, currently 15 years of age)  lips and Sosie's eyes began to well up.

Both Addie and Sosie are keenly aware of the situation. Addie had called on a couple of occasions with specific questions about radiation and pain. I answered each question completely honestly. Addie is 11 and Sosie is 15. Their understanding mirrors our adult emotions and understanding. As such, we have all agreed to respond to them accordingly. Despite sadness in their eyes, both girls were their normal cheerful selves. They were just a lot more glued to Nina and smothered her with way more kisses than usual; but Nina didn't mind! Not one bit!
 

It felt so good to be reunited with family!! No one said a word but it was universally acknowledged that the love our family shared had already been transformed to new heights! We all privately thanked God for the precious gift of ALL being together.