Day 13

Monday, August 30, 2010

Today was a bad day! It was a crappy day!! Today was the kind of day I did not need!! Today was the kind of day that Nina, of all people, did NOT need!

First of all, Nina woke up in a terrible mood. All night long she had tossed and turned. It has been almost two solid weeks since she had last talked in her sleep. Well, between 1 and 4 am Nina did a lot of sleep talking. She cried and cried and then intermittingly said she was scared. My mind raced! Why was she scared??? I asked her but she didn't respond!

To make matters worse, we were given strict instructions that we could not feed her or let her drink anything after midnight. Well, she woke up starving and let us know immediately!! When we weren't able to assist her, she blew a gasket!! She screamed and cried and screamed for what seemed like an eternity!

Before going to radiation, we were suppose to go see Dr. Slominany's team at the oncology clinic and have some blood work collected in order to see if Nina would qualify for an immunization clinic trial out of Pittsburgh. We got there and the nurse had no problem accessing Nina's port. It flushed and she didn't scream. I was optimistic that we were turning a corner then the other shoe fell! The port flushed but it didn't drain at all!! The tiniest amount of blood came out which is not okay given that port is a catheter to a fairly large vein near the collar bone. The whole point of the port is to prevent her from having to be poked repeatedly with needles. Not only did the port not drain but Nina started to scream. It was only Monday morning and she was already over it!! She had been poked, prodded, tested, talked to by dozens of strangers for two consecutive weeks and she was done! I really couldn't blame her and felt my own stress increasing exponentially with each tear that trickled down her delicious, albeit melancholic, cheek!

Passing time with Auntie Lynn

The sweet nurses tried to be encouraging. They re-accessed her, hoping it had been their fault that the port was not draining. But...it wasn't their fault; the port was just not working properly. They decided to send me to radiation and return to have TPA (some kind of medication) injected into the port with the hope of eliminating whatever fiber had grown over the course of the weekend. I just had a bad feeling that this was not going to work out well!

By the time we arrived at radiation Nina was psychotically protesting her fast. She screamed and cried and not matter what we did she remained angry about not having food. She just wanted to eat! Anger I could manage without a hitch. What made her crying hard to bear was that it was crying out of pain, "emotional pain" to be precise. I felt a growing lump in my throat. I hate those lumps! I apologized to her and tried to make her comfortable but nothing I did worked. Then... Nina gave me a line! She proclaimed that he wanted a hot dog. Eileen jumped at the opportunity to go get her something motivational and was off to the rescue. The anesthesiologist finally arrived and Nina was ready to go.

While Nina was receiving radiation I got bad news that the Zoo party on Saturday might not happen after all. Now the only reason I had wanted a Zoo party so quickly was because we werent' sure how aggressive the tumor was going to behave and we needed to make sure everyone we loved (family and friends) had an opportunity to see her, be with us, before....

Now, despite all the efforts Larisa, Sharon, Crystal and Katie were making, as well as my amazing neighbor Gina, several major obstacles existed and looked like they would never be overcome! I was disappointed not because I wanted some fancy party but because I was worried that we wouldn't have an opportunity to give Teddy and Nina, as well as all the other kids in her life, an opportunity to just have fun, before fears of sadness and separation developed. Nina had always loved the zoo; it was probably her favorite place in Santa Barbara! We had spent hundreds of hours at the zoo during her infancy and early childhood. It just made sense to have it there but I conceded that we might just need to have it at a local park. Nonetheless, it was still disappointing.

While my heart sank with the news about the zoo and the stress about my "new" life increased overall, Dan called. He and Linda have impeccable timing. They seem to sense when I am falling and God uses them to support and prop me right back up! When I answered the phone, Dan could tell that I wasn't my usual optimistic self. He asked what was wrong and the flood gates opened! As I spoke to Dan, Eileen rubbed my back. She is such a good friend. No she is beyond a good friend...she is the greatest of friends!! I explained to Dan what was going on and in his usual calm manner he assured me that there was no need to worry, that every thing would work out!

Eight minutes later, Nina was back in her room recovering. Recovery this time was long and brutal. It took her almost an entire hour before she woke up and came to. Poor Eileen had raced to the Hamburger Habit to buy Nina a hot dog. Nina had made it very clear that she wanted a hot dog and we were determined to be prepared for when she awoke.

Well..she woke up and after a bit calmed down. When Nina woke up from sedation, every one in the Cancer Center knew!! Then we proudly offered her the hot dog. We knew she would be delighted and we eagerly anticipated her sigh of relief at the taste of satisfaction...but...NO....there was no delight, no satisfaction. On the contrary, there was screaming and crying! Apparently, the hot dog did not taste like a hot dog. Over and over again she'd take a bite, only to spit it out as quickly, simultaneously screaming, "No!!!" I felt so helpless so incapacitated!! What a rotten day!!

Before going back home, we strolled Nina back to the oncology clinic to get the TPA in her port. On the way over there, she screamed that she didn't want to go on a walk. Her screams and cries penetrated every inch of me and I ached, a terribly cruel ache! I didn't want to see my child scared or sad but especially not scared. I found myself questioning whether or not we were torturing her, being selfish. I felt that damn lump grow again in my throat!! Why was this happening to my precious girl?? Why couldn't she catch a break?? Wasn't it bad enough that she'd been given this death sentence??? Why did her port have to not work??? Why did her belly have to hurt??? Why did she have to have nightmares??? Why???

Pam, the nurse at oncology, sweetly greeted us and tried to encourage me. But nothing could encourage me! We quickly got the medication into Nina's port and flew out the building as quickly as possible. I wanted to be out of anything related to cancer and tumors! I wanted to go home and more importantly so did Nina!

By the time we got back to the car, Nina had stopped crying. She knew we were going home and was relieved. I wished I could have felt relief but all I felt was claustrophobic from the walls falling all around me. Dan texted me to find out about the port. I responded and said that it still wasn't drawing and that they had put TPA in it. I also sent a second text stating that I was headed home and was planning on spending some quality time with wine! The good doctor just sent me a smiley face back :)

When we got home, Nina planted herself on her favorite chair and proceeded to call out orders for her desired foods. Like little obedient soldiers, we marched back and forth from the kitchen to the living room carrying small trays of Pirates Booty, strawberries, peanut butter and jelly sandwiches, and chips. It was like tapas for kids...small little portions, wide variety of options!

Then, just like that things started to turn around. Nina's mood improved and to our surprise Dan's wife, Yael and their three boys came for a visit. Teddy and Josh instantly picked up where they had left off the night before. Andy (3 years old) and Matty (6 months old) joined us in the living room. Nina got an especially big kick out of roly-poly Matty who weighs more at 6 months than Teddy did at 1 year old (17 pounds and counting!). Not only did Yael bring gifts for our kids, she brought me a wonderful gift....a gorgeous bottle of wine!!! Todd opened the wine and poured the three ladies each a glass! For about an hour we sat and believe it or not...LAUGHED! It felt good to complain about the crappy day and then laugh at some of the ridiculous things that happened. To our delight, Yael was not only charming and lovely but had a wicked sense of humor and a fabulous laugh!!! Todd and I decided right then and there that we liked Dr. Brennan even more because of his wonderful wife:)  Sometimes all you need is some good wine and friends!!

After Yael and the Brennan boys left, Teddy announced that he was completely exhausted and was excusing himself upstairs to watch a movie and have himself a "little quiet time". The kid is hysterical....and flat out awesome! Eileen and I continued to sip our wine. Then at 8:15 pm Nina asked to go potty. She did not cry, she did not protest. She simply sat down on the toilet and proceeded to produce the largest BM any small child has ever produced!!! I shouted out in joy and told Todd and Eileen the great news!!! This meant Nina would not be in pain and could sleep tonight! If she she slept then we would sleep!!

Ironically, our day had started off crappy in a bad way...but now...our day was ending crappy in a good way! Go figure!