Tuesday, September 28, 2010

Day 36

Wednesday September 22, 2010

We have had three full days of no belly pain!! What a miracle!!! Between adding more greens, limiting carbs a bit more, increasing the smoothies, and the miralax and colace combo, Nina's constipation has been under control. Thank you, thank you, thank you, for all the prayers. I also think the issue was that she was only having a BM once a day. Now with this new regime she is going twice, which I think is necessary given the volume of food she is consuming daily; we have also been able to manage that a bit better and it has helped that she is not as crazy hungry since we've been reducing steroids. What a relief to not see her in constant pain!!

When we returned from Cedars in August, we really felt like we were bringing her home to die. Consequently, whatever she wanted we did, especially related to the amount of food we allowed her to eat. Now we've realized that God is blessing us with time and as such we need to make sure our efforts at showing her how much we love her (by giving into her food whims) don't actually cause more problems than bring joy. This is a very bizarre quandary to find ourselves in. It is such a learning curve, and we are desperately trying to keep up!

This morning my friend Kelly joined us at radiation. I think it really does help people to see what happens in treatment. Kelly and I have been friends for a very long time and in many ways she is the President of the Mama Bear Club! I have learned a lot from her patience and resilience as a mother. During her visit, she sweetly agreed to video tape Nina's recovery. I am going to do my best to download this video so family and friends can see what a typical day for us in treatment consists of. However, I'm not sure if the downloading will work since the video is so long.

On a typical day, we arrive at the Cancer Center around 9:30am. Cindy then takes all of Nina's vitals and finds out what she had for her midnight meal and at what time the feast occurred. On Mondays we also have to weigh Nina and then her Port is accessed (i.e., Cindy sticks the needle that connects to the port so that then the IV can be connected too. The poke doesn't really hurt because I put on Emla cream an hour before so the skin is pretty numb. Nina still squawks about it. Just scary!).  After Nina's vitals are collected I usually have about 30-40 minutes of entertaining I have to do. If we are lucky Nina will want to watch a movie so I can just talk about what we are seeing. If she doesn't want to watch a movie I then have to either perform some kind of comedy routine (trust me it's not that funny.....Nina is a very silly audience), chat about our day and upcoming events,  or tell stories about Nina and Teddy when they were babies. Currently, Nina loves to hear stories about her early childhood. It is super sweet!

Once the anesthesiologist is ready, Cindy and I stroll Nina into the hallway directly outside of the radiation room. The entire time she stays in the stroller. Once we arrive to the hallway, I pull the stroller canopy over Nina's head a bit so she can't see the doctor. I then squat down right in front of Nina so that I'm at her eye level and proceed to tell her a silly story, make plans for the day, whatever comes to mind. In general I try to say and/or do something that will make her smile and laugh. During this the anesthesiologist gives the Propohol intravenously without Nina being aware of anything happening. Within 30 seconds she usually says, "I'm wiggly." to which I reply that it is okay and she can close her eyes. Depending on how much she fights it (i.e., opening eyes and reminding me what she wants to eat) Nina is usually out within another minute. At this point, I say goodbye and the doctor and nurses take over. I know I have said it before but the staff at this center has made this nightmare completely bearable, even pleasurable because of their collaborative and supportive spirits.

Treatment today was relatively a cinch. Nina calmly strolled in, said hello, chatted while she was waiting for the anesthesiologist, and then recovered fairly quickly from sedation. As we were packing up and getting ready to go home Nina announced that she wanted cotton candy ice cream from Thrifty. Kelly and I were happy to oblige, so off to Rite-Aide we went.

When we got to the ice cream counter at Rite-Aide Nina was beside herself. She kept saying, "I'm so excited. Cotton candy ice cream is my favorite!" She had been thinking about cotton candy ice cream all morning long. She couldn't contain herself. The gentleman behind the ice cream counter greeted us and told us that he had every kind of ice cream flavor.....except for cotton candy!!! My heart and Kelly's sunk! I looked at Nina and the brightness that had been bouncing across her sweet face the previous second vanished before my eyes! Her lip started to quiver. I immediately dove right next to her and assured her that we were going to find cotton candy ice cream, we just needed to go to another store. I thanked the gentleman and told Kelly that we could walk over to Carvel's Ice Cream. They would surely have cotton candy ice cream!

By the time we got to the other side of the shopping center it was well past 12:30. We walked up to Carvel'sCarvel so we easily redirected Nina to lunch with the promise of ice cream after the store opened. The three of us delighted in orange chicken, broccoli beef, and chicken and string beans :) Then we waited, and waited, and waited. It was almost 1:15 and no sign of life in Carvel. I was about to call Rite Aide on the Mesa to see if they had cotton candy ice cream in stock when Carvel opened its doors. I was so happy. Finally, Nina would get her long awaited treat for being such a brave girl. Kelly walked in and....NO COTTON CANDY ICE CREAM!!

Amazingly, Nina was totally calm but I was about to start crying! Why???? I asked Kelly if she was in a hurry and she said no. I was now determined to get Nina her ice cream if it was the last thing I did! I had been challenged by some invisible ice cream warlord and I was not going to back down! I announced that that we would drive to La Mesa and get cotton candy ice cream. I started to push the stroller back to the car, Kelly confidently marching beside me, when Nina pushed back the canopy and said, "I just want banilla ice cream." So....back to the original Rite-Aide we went and got her a "banilla" ice cream cone. She was delighted, I was annoyed that I'd lost the battle....but was still determined to win the war!!! I was going to find Thrifty Cotton Candy Ice Cream!

We went home, where Nina crawled onto the living room mattress and requested to watch a video. She ended up taking a small nap. While Nina napped and Kelly watched over her, I ran a few errands. I used to be able to do so much in my day and now...I could barely accomplish a few things off my "to-do list". I didn't know where the days went but they flew by. I didn't like it! Nina was back, albeit not a 100%, but she was back. I wanted time to slow down so we could savour moments more acutely. When I touched Nina, kissed her, hugged her, smelled her, looked at her, it was all so much more intense! It was as if my own body, unconsciously, was trying to memorize her.

Teddy came home in a wonderful mood. He sat beside Nina and told her all about his day. He brought out the froggies she had bought him the previous day and they sat and watched the critters swimming around for almost half an hour. They laughed together and Teddy made up ridiculously funny stories about the frogs. Nina, like every younger sibling, had always strived for Teddy's approval and admiration. He was so conscious of her not being healthy that he went out of his way to make her feel special, to make her laugh.

Dinner was quiet but bath time wasn't. Nina has developed some very serious and strange temperature sensitivities. Basically her bath water needs to be tepid and even then she screams that it is too hot.  One second things are hot then the other they are freezing. Temperature is not just the only thing that is different. Her ability to tolerate tastes is different; the very same dish can be too spicy one bite and just fine the next. Additionally, her sense of motor control has been adversely impacted. She can't stand being carried because she feels like we are going to drop her. It is all very sad! Sometimes it is easy to just be patient and support her, other times when we are tired and emotionally spent, we just want to cry!

Although Nina now pretty much despises taking a bath, she does love getting out of the tub and being wrapped up into a warm towel, fresh out of the dryer. I remember being a kid and my mom doing that for me! It was the most special thing :) So when we had kids I started doing it. Both Teddy and Nina love to have warm towels to dry off in. Since bath time is such a chore for her now, we definitely have a warm towel every time. We wrap her up and then cuddle with her on the living room mattress. She especially likes it when we call her our little burrito :)

Tonight, like most nights, Nina was done by 7:30. After her bath, she looked at me and said, "I'm tired!" Both of our kids have always been great at telling us when they are done and need beddie-bye. So...after Nina declared it was lights out, it was lights out! We brushed teeth, said our prayers, and went to sleep!

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