Day 174

Monday February 7, 2011

It felt like I spent my day wandering through a heavy fog. We had a terrible night. Nina struggled severely. She kept waking up and trying to tell me something but her voice wouldn't work. She'd open her precious mouth to find emptiness. This would cause her to panic! My poor sweet baby. She'd try to say something and then panic because her voice was nonexistent. Thankfully she'd keep mouthing what she was trying to communicate, allowing me to read her lips and make out what she was stating. At one pint, she turned to me and mouthed "I can't breathe!" My heart beat violently as I tried to calm her down, reassuring her that I was right there with her. Nina must have woken up to horrific panic at least 5 times. This is just too cruel for anyone, must less a little girl!!!

As if her voice and breathing weren't bad enough, Nina was terrified about getting treatment again. She must have sobbed at least 5 times, begging for when we could stop. "When are we going to be all done with the pokey in my boobie?" "When am I going to be the same?" "I don't want the pokey anymore!" "Mama, I don't want to go get medicine. When am I going to be all better?" Each question might as well have been a flaming arrow piercing me directly in the heart!!!! This is so cruel!!!!!!!!!! This is the cruelest, most horrific thing any one should be subjected to. NOT MY NINA!!!!!

Given how awful the night was, it was no wonder that the girls slept in until almost 10am. When they woke up I greeted them with breakfast in bed, which was a breath of fresh air to both girls and for Nina a literal breath of air :( Shortly there after, my friend Danny and his almost 2 year old son Grady (his birthday is the day after Nina's on the 24th!)

After lunch it was time to run to oncology for Nina's Avastin treatment. As soon as we pulled into the parking lot she started to scream. The drive over had been minimized because of Sosie's presence, but now, not even her darling cousin was a sufficient enough distraction :( Once inside the clinic, I could tell that the nurses were shocked to see how Nina had deteriorated in two weeks. She couldn't walk at all, even assisted, her voice kept getting "caught" when she tried to speak, her drooling was continuous, her breathing labored, and her overall quality....extremely poor. I could see it in all their eyes....Nina was dying and they all knew it!!!

Sosie is a living angel, a testament to how we can all seize opportunities to better our lives and bless those around us! While Nina screamed in fear about having the "pokey" thing in her boobie, Sosie tried to calm her down by singing silly songs and telling her stories. It was like looking at myself, except this was a beautiful almost 16 year old girl with a greater capacity for calm and steadfastness than most adults!! Once I picked up Nina and put her on the exam table then she really started to scream in fear!!!! There is absolutely nothing we can do to calm her down. All we can do is hold her hands and that is what Sosie and I did. As I comforted by tortured child, I looked at the beautifully healthy one in front of me. The angel with blond hair and blue eyes holding her dying cousin's hands and stroking  her legs with unyielding love and I thanked God for the gift of Sosie Elle Fredeen!!!

As soon as the needle was in, Nina stopped crying. It is not about the pain. It is about the fear. We sat her up and Sosie, ever the little sprite, jumped right in Nina's face and proclaimed, "Nina you are the bravest girl in the world! There is no way I could have ever done that but you did!! I' so proud of you!"

Sosie continued to entertain Nina during treatment. We tried to bring in Molly at first but got told we couldn't. Eventually, our nurses convinced management that Molly is a therapeutic dog so we got to bring her inside :) Not much later, Mario came by to drop off some new coloring books for Nina. While they entertained Nina, I spoke with Dr. Slomiany. I was numb with heaviness when I entered the room with him, but that quickly changed to grief! I felt it crawl up my chest and make it's way into my throat. In essence, Dr. S confirmed my worst suspicions. He said that continuing chemo at this point would make no difference and that what we needed to do was now focus on making her COMFORTABLE!!!!

Making her comfortable!!!!! Those words. I knew those words were coming. But sitting alone in that room with Dr. S and hearing them was like being back at Cottage Hospital August 19th, receiving my daughter's death sentence all over again!! But this time, it was worse. It felt different. Somehow more real.

We had the dreaded "quality of life" discussion. I asked all my questions and Dr. S calmly answered them all. We concluded by agreeing it was time to start/switch to hospice. It was good (never can be good) timing because our hospice nurse Laura was coming later this afternoon. But it is what it is. My soul cried but I refused to crack!!!!

All along during my conversation with Dr. S I could hear Nina, Sosie, Mario and the nurses laughing next door. I felt myself cracking but needed to hold on so I could check on Nina. When I entered SosieSosie who confessed that she had shown them all a video on her phone of me and Kyle battling it out on Just Dance!!!! I have never been more grateful for ridicule because it helped me contain myself. We laughed some more. Then I tried to take one of Nina's goldfish and she said to me, "Off with your head!!" We laughed even more!!! In the midst of her most horrific of times, Nina still fights to build happiness!!! She is my hero!!!!!

Our laughter quickly ended when Nina reached for me and tried to say something but her voice didn't come out and we could all literally hear her struggle with breath. We all went pale!!! Thank God I was able to make out what she wanted. She wanted the blueberry muffins in the car! Perfect! I could escape. I had Sosie re-engage her in an activity and then went to the car and sobbed!!

I cried!
I cried!
I CRIED!!!

But I knew I couldn't cry forever. Eventually I wiped away my tears and got to task....taking Nina her blueberry muffins. The look of happiness on her precious face was all I needed. Lucky for us, she was willing to share 1 muffin with each of us, but that was it....the rest were hers :) Not much later, we were done and back home where the girls took a nap on the bed and then watched Pink Panther before I had Sosie start her homework. Todd and Teddy were also already home. Nina was elated to see her dad. While everyone else was busy, I escaped to speak with Linda and wait for our hospice nurse.

Both conversations were the same. Lamentations over our heart ache and then fortification about how to proceed. From the beginning our hope was for healing and that remains our hope!!! However, quality of life has always been priority. We knew from the beginning that when we crossed this bridge we were not going to do anything that would increase or maintain Nina's suffering. Nina is suffering! Nina is suffering. Nina is suffering!!!!!!

Linda and Laura (our hospice nurse) gave me some wonderful information. We did not need to have Nina suffer. We could treat her symptoms so that she could be peaceful and pain free. I went for a long walk and cried! Unlike August, I did not scream. I just cried quietly. My soul is bleeding!!!! I now knew what we were facing......and I cried quietly, wandering through the darkness of our neighborhood.

I must have wandered around for half an hour before feeling strong enough to keep it together and return home. I had to return home. Nina needed to be loved and made happy. Sosie and Teddy needed help with their homework, but more importantly they needed to be loved deeply!!! Erik, Teddy's tutor arrived in the nick of time. We finished our evening like we always do. However, as Todd and I quietly stood in the kitchen fixing the kids and Erik their dinner, we knew that nothing was ever going to be the same!!!