Friday, February 18, 2011

Day 178

Friday February 11, 2011

We had a slow morning at the Biltmore. Initially nothing sounded good to Nina from room service so we just order a variety of breakfast yummies: banana pancakes, Belgian waffles, and raspberries. Nina loved the banana pancakes and raspberries! In fact, she ate an entire huge plate of raspberries. Over the course of the week I've learned that Nina's hysteria over food and rejecting food is simply that...hysteria. If I insist that she try something before we move onto something else (something I know she loves) she will end up gobbling it up. The poor baby just doesn't feel good and I'm positive things don't taste the same so she's all messed up. 

After breakfast, the big girls all took baths and enjoyed the steam shower. Sosie was especially impressed with the luxuriousness of the hotel in daylight, so while Nina napped, she and Yvonne explored the grounds and made their way to the exclusive Coral Casino (a really fancy pool and recreation center). When Nina woke she requested vanilla yogurt which Yvonne bought on her way back in. Unfortunately according to Nina it wasn't the right brand so she started to tantrum. Eventually she had me help her off the bed and into the kid's tent the hotel staff had set up in the bedroom. She yelled at me for about 3 minutes about the wrong yogurt teasing bad (although she hadn't tasted it!). Eventually, she conceded and took a bite. That bite led to another bite and then she ended up gobbling it all up. 

Since it was such a beautiful day we wanted to take her strolling. Sadly, Nina was not game. The problem was that she had outgrown the Marban's stroller I had been using since August. For the past week I had noticed that it was increasingly difficulty for her to be comfortable inside the stroller. As we put her in, she screamed and hollered that she wasn't comfy. The only thing that helped her was asking if she wanted to go shopping for more make-up. Indeed she did and it helped motivate her to stay calm at least momentarily!

The rest of the afternoon was very challenging. She would have small moments of being happy (like buying make up at Sephora) followed by long periods of heartwretching discontentment. After shopping we drove around for a bit and it was all unintentional stalling. We had to pick up the Verced to give to Nina that evening. So after we left the mall we wen to not 1 but 2 pharmacies. I was extremely relieved by the prospect of Nina getting some rest. 

In spite of Nina not fitting into her stroller, I was determined to find Nina some kind of traveling accommodation that wouldn't frustrate her. Lots of folks have offered us wheelchairs but I am pretty sure that would only cause Nina trauma. While Yvonne went to the second pharmacy, I stopped at a kids store to see if they happened to have a larger stroller. Sadly, nothing worked. Back to the drawing board.

Shortly after we arrived home, Brandi and Inga arrived to spend the weekend with us. We were all so excited to have them over, and no one was happier than Nina. She gave Inga-pie the biggest smooch ever. This was our life now; trying to construct bits and moments of happiness. 

Nina and her angel!

Thursday, February 17, 2011

Day 177

Thursday February 10, 2011

Thank God Nina slept!!! When I returned from Vons after midnight she was asleep. She didn't wake up again until 3am. The three of us chowed on McDonald's french fries (who says reheated fries aren't good!) and vanilla yogurt with granola. After she ate, Nina turned to me and thanked me for the yummy food before drawing me in for the biggest smooch ever!!! Then she crashed again.

When my alarm rang at 7am I couldn't believe we'd had a relatively calm night. I went upstairs and woke up Teddy with a kiss. I whispered in his ear, "Oh my goodness you are so warm...you are like a little heater!" He opened up his covers and in a hoarse morning voice retorted, "Crawl on in and let's get cozy!" I just laughed as I wrapped my arms around him!! What a character! After cuddling for a bit, I proceeded with Teddy's new room service routine, which not only consists of breakfast in bed but his favorite dvd on his computer, all hand-delivered.....all that is missing is the silver tray :)

When I returned home, the girls were still asleep. I quickly hopped into the shower and was back downstairs before the girls work up. I texted Yvonne (who was coming up to stay with us for a couple of days) to see where she was and then made myself a warm cup of coffee. I had literally just sat down when I heard the girls wake up. First thing Nina said, "I'm hungry. What's for breakfast?" The second thing she said, "When can we go to a new hotel?" Sosie and I just laughed! Nina is magical!!!


We spent the day being girlie!! Sosie did Nina's make-up again and it looked gorgeous!! We then went and shopped for more birthday decorations and goodie bags for her friends. Before we left for our daily errands, I called our Hospice Nurse. Linda had urged me to advocate for more support. I agreed we needed more and after having spoken with Laura (our Hospice nurse) on Monday I knew I could ask for something that would elevate Nina's mood while not completing doping her up! The lack of sleep was not okay and it was compounding Nina's misery. I spoke with Laura and we agreed that she would get the doctors to prescribe Verced to help get her to fall asleep faster. We then discussed doing a formal intake with Hospice on Monday so that we could have all-around support.

Sosie you're embarrassing me!

On our way back home, Lynn Koegel texted to find out if Nina was still interested in spending the night at a hotel and if so when. I said that she would be ecstatic and that tonight would work best, given that we had family coming into town. Lynn said that she and her friend Mer from the Teddy Bear Cancer Foundation would do their best. As it turns out, Lynn and Bob Koegel ended up sending us to the Biltmore in Montecito. Earlier last week I had said that the Teddy Bear Foundation had given us this treat but I stand corrected, it was a gift from the Koegels to Nina.

When I told Nina we were going to a new hotel she lit up. As Yvonne and Sosie packed for girls night away I ran to the store to pick up some of Nina's snack requests. When I returned Nina was still naked (in her pull ups only) and refusing to get dressed. Todd and Yvonne had offered several outfits but she refused them all. I said she didn't have to wear clothes which they practically bit my head off for. I told them to hold their horses as I explained that she could wear her robe. Eureka!!! She loved the idea! Sosie then suggested we all wear our robes, which Yvonne and I found to be a perfectly delightful idea!!!!

In the Biltmore lobby with our robes...Nina humiliated :)

So we loaded up Nina and all our gear....it looked like we were going to stay for a month! As we drove to Montecito I started to laugh hysterically and told the girls I felt like the Beverly Hill Billies....driving my beat up Toyota Sienna, with the broken windshield, missing hub cap and recently smashed in passenger side :) All we needed was to be thumping loud music as we pulled into valet and we'd for sure win the most outrageous guest award :)










Our stay at the Biltmore was wonderful. The staff were generous and kind, upgrading us to a killer suite with a view of the ocean. Nina was greeted with a plethora of gifts from the hotel and a smorgie of designer made desserts. The bath tub was even decorated for her :) All in in all our stay was lovely. We have her 2mg of Atavan as prescribed by Hospice, which helped some with sleep. She did take a while to fall asleep and whimpered off and on, stating that she couldn't get comfy until about midnight. The rest of the night was reasonable with just mild tossing and turning. I was grateful for this welcome distraction of Nina and for the opportunity to escape into the darkness for a tiny bit. With Yvonne and Sosie next to Nina, I felt comfortable taking a few moments to process my emotions. I felt battered by the new onslaught of torment. I needed reassurance and that night I got it!!!!

Pray for Daisy

The first thing that popped into my mind this morning after I woke up was Daisy Love Merrick. Daisy is a darling little girl who lives locally and has been battling cancer herself. Her parents also keep a blog and when I checked it this morning, her parents had asked for prayers because Daisy is having a hard time recovering from chemo, experiencing lots of pain and frustration.

A while back, Britt, Daisy's father, posted a link to our blog on one of his posts asking that folks also pray for Nina. I have been meaning to do the same thing for Daisy but until now have failed to do so. For some reason, my heart was moved this morning and I knew I couldn't wait any longer. Please pray for Daisy and her family. Pray for strength and comfort and pray for the little seeds of happiness that Nina has had the joy of experiencing. No child should have to battle what these little girls are!!! Yet they are and as Nina's mom I do find comfort in knowing that so many are praying for her, as I am sure Daisy's family is too!

Please pray and visit their website:

www.prayfordaisy.com



Bathing Beauty

I took this video of Nina yesterday mid morning. I thought it might be helpful for everyone to see how her symptoms are deteriorating! In this video, Nina cannot be more eager to be going swimming. Yvonne, ever the consummate planner, had called the local YMCA who happily agreed to having us come! It is beyond obvious that she is severely struggling with speaking and breathing!!! But yet...even in the middle of her own misery Nina fights. She never stops fighting. Her sass is brilliant and her smile luminescent!!!

Day 176

Wednesday February 9, 2011



Our night was again plagued by turmoil!!! Nina is deteriorating right before her very own eyes!!! The cruelty of this is unbearable, yet bare it I must!!!

Although Nina had slept a bit more than the night before, she was still plagued by misery!!! Seeing her in misery was eating away at all of us!!! Again, while I took Teddy to school, the girls slept in. Nina woke up around 9:30 and had already eaten two slices of jelly toast (the evidence all over her cheeks) when she said, "Mama, come cuddle with me. Come closer, I need to lay on you!" As soon as she did, she passed out for another hour long nap. Leave it to my honey-girl to bring me joy and comfort in the midst of the greatest tsunami of my life!!!!

Nina woke up again around 11:15 and shouted, "Where's Sosie?". Almost instantly, Sosie opened the bedroom door and greeted Nina with the biggest and brightest smile! "Sosie, come sit!" Nina demanded with the world's deepest happiness!!! My heart fluttered at seeing how Nina and Sosie loved each other!!!

Shortly thereafter, Danny saved the day again; this time he brought the kids pizza and me a sandwich from our favorite deli, South Coast Deli! Nina announced that she loved the pizza, which made Danny burst into the joke he had used all week long to make Nina laugh, "I'm glad you liked the pizza, but did you know that the neighbors have TWO BABIES!!" Each time Danny said TWO BABIES Nina would burst into hysterical laughter! Our neighbors did have twin babies but it was Danny's ridiculous voice and mannerism that made the utterance so goofy and funny!!! How I love making fun of Danny :)

Before picking up Teddy from school, Nina joined Sosie and I at the party supply stored and practically bought every single Spongebob decoration!!! Nina's face beamed with each new discovery we made. If only we could find a Patrick pinata!!!!




On our way back home, Nina fell asleep. I carried her into the house where Sosie hung out with her and sleeping Grady! I quickly went Kellogg to pick up Teddy but I couldn't find him any where. I was just about to go the office and find out where he had gone, when I heard his buddy shout, "See ya later Teddy!" I looked up into the tree and what did I see...a Teddy bird!!!



When we returned home, Sosie had a grin on her face and told me that Nina had woken up and asked her to walk to the bed. Sosie had done what I did with short distances, secured her by holding her underneath the armpits. Apparently, Sosie explained that Nina did not like this and had smacked her hard, then demanded that Sosie apologize!!!! I literally could not contain myself and just laughed at my rascally girl!!!

I spent the early afternoon monitoring Sosie and Teddy's homework. They are very similar in nature; both are brilliant and have incredible hearts but they are both disastrously lazy and helpless. If something is slightly difficult and they are not beyond motivated they give up. However, being Teddy's mom has taught me that all that s required is a pair of loving  hands to help mold and shape in the right direction. The entire time Sosie has been she hasn't complained about doing homework once. Quite the contrary, when I suggest she spend some time on it she does it without hesitation. She does find me to be a loving dork given that I am excited to sit down and help her read and comprehend Shakespeare's poetry! Once a dork, always a dork :) I did tell her that dorks can also be beautiful (trying to encourage her to let out her inner dork) but she didn't buy it :)

Around 6pm, Larisa came by to hang out with the kids while Todd and I went to sit by the pool to chat about Nina. In the darkness of the cold night, we sat and had the most wretched, horrific, and torturous conversation any two parents should ever have to have. Even as I write this it still feels like a nightmare, and I keep waiting to wake up. But I never do. Todd and I sat there and talked about how to carry Nina through death!!!!!!!!!!!!!!!! When you have a child you never expect that this will be a conversation you will ever have to have. But we had it!!!!! We cried!!!!!! And then Todd agreed that we could not drag Nina through misery, that torturing our honey-girl with things like a G-tube was out of the question. Bottom line (if there is such a damn fucking thing!!!!!) if we have to lose Nina we want to spare her as much pain as possible. Thank God our medical team can help us with that. And so....we agreed to discontinue chemo because it is no longer working and that as soon as our honey-girl loses the ability to swallow we would start palliative sedation. There is no possible way to comprehend or explain how it feels to plan for your child's death!!!!!!! All I can say is that it is wrong!!!! We are in hell!!!!!!!!!!!!!!

By the time we went to bed Sosie and I were exhausted! Unfortunately, our day had just begun. Nina started to complain that she was starving. This time, I used my previous trick and insisted that she eat some butter toast before I even considered getting her another snack. She protested at first but then gave in!!! With some food in her belly she wasn't as beastly and could think clearer. She thunk and thunk and eventually decided she wanted vanilla yogurt and granola. So, once she was nice and comfy and almost out, I raced to VonsMcDonalds and pick up some fries and chicken nuggets. Boy, would I ever be happy I had done that!!!

Day 175

Tuesday February 8, 2011



This was the most awful night yet!!!! Nina was up every couple of hours sobbing and screaming. "I can't get comfy!" she shouted as she slapped me for the umpteenth time. She was too hot, she was too cold, she was starving, nothing tasted good, her toes hurt, the pillows weren't right, EVERY THING was WRONG!!! For hours, Sosie and I did everything we could to make her comfortable any happy!!! We literally were up for hours, trying everything in our capacity to find out what she wanted to eat, how to cool her off, how to calm her down. Nothing worked!!!!! Eventually around 4:00 am I could tell Sosie had reached her limit. As Nina started hitting me again and screaming, Sosie covered her head with the blanket. Enough was enough. I made Sosie get up and go to Nina's bedroom, where I tucked her in and told her to get some sleep.

I then made the decision to do a very hard thing. I returned to Nina and told her I loved her very much and that I understood she wasn't feeling good but that she couldn't scream any more. She hit me and told me I was stupid. I went to the kitchen and made her some butter toast. When I returned to her side I told her she needed to take a bite. She screamed and hit me. I tore a small piece and told her to eat it. She screamed, "NO!!!" I then explained that if she kept screaming and crying that I was going to have to take her to the hospital because otherwise she must not be feeling well. I hated doing this but I felt like I was stuck between a rock and a hard place. She then screamed, "You're the meanest mama in the world!!! I dont' love you any more!!!" I didn't say word, but gave her a piece of toast. She threw it across the room. I gave her another piece and told her to eat it or that I'd have to take her to the doctor. She put in her mouth and angrily ate it. I quietly gave her another piece and she threw it. I gave her yet another and this time she ate it and then....then she reached for another piece. After this piece, she ate the entire slice of toast and drank a cup of milk. Within another couple of minutes, she was passed out! Finally, she was asleep. Nina slept for the next 5 hours and so did Sosie!! Sometimes, a mama just has to be firm to help her cub through a hard time!

Once the girls were sound asleep, I showered and before long it was time to get Teddy to school. He is such a sweet boy!!!! He woke up in a great mood as I crawled up next to him, "Good morning love bug!" He just smiled the biggest smile! It melts my heart that something so simple as greeting him as love bug makes him so happy!!! He is my precious heart!

I realized after dropping off Teddy that I was exhausted!!! Danny and Grady came over shortly after the girls woke up! It was good to have his company. Nina thought Grady was "so cute" but was completely annoyed that sometimes he didn't respond to her. I explained that he wasn't even 2 years old and that sometimes small kids have a hard time consistently responding. Apparently this wasn't a good enough response. I just laughed! Nina had become one of the least consistent responders ever and here she was criticizing Grady :) My darling girl!!!

After getting her make-up done, Nina was ready to go have lunch at IHOP. Since waking up she was eager to do so. However, once we got into the car, she started screaming that she didn't want to go. Sosie tried to calm her down and lighten up her mood but Nina hit her! This was the first time Nina had hit her. I could tell Sosie was surprised even though she beautifully played it off. By the time we arrived at IHOP, Nina was in full throttle tantrum mode. I had Sosie join Danny and Grady in the restaurant while I tried to calm down Nina. I explained that I could order the food and take it home for us to eat, that we didn't need to stay at the restaurant. Then she started to tantrum that she wanted to go inside. I just commanded myself to breathe!!! My heart was racing and my mind flying all over the place trying to figure out how to help Nina. I felt so helpless!!!! I explained to her that I was just going to wait until she was calm. 5 minutes later, she stopped crying and told me that she was ready to go inside. As I picked her up to put her in the stroller, she clamped down on my shoulder and bit! She bit me hard, so hard that she actually tore the skin :( I put her down and firmly told her that she couldn't bit that it was mean and hurt mama!!! Immediately she started crying and pulled me in for a slobbery kiss, "I'm sorry mama!" My heart broke. She can't control herself!!! I kissed her back and reassured her that I loved her!! My heart and soul ached! I needed some coffee!!!!



The rest of our time at IHOP was great. Danny treated us to lunch so I told Nina to go all out and she did. She ordered pancakes, chicken strips, and mac-n-cheese :) SosieSosie and Teddy. We killed some time before picking up Teddy by driving around. Nina napped and Sosie and I talked!!! Spending time with Sosie was an absolute gift from Heaven!!! Helping her organize her school work, shopping, talking about life was such a good distraction. Time spent with Sosie made me feel normal again....albeit briefly!!!

Eventually we made our way to Nordstrom's (Nina's choice!) for some shoe shopping. Unfortunately her good mood did not last long and she screamed and hollered that none of the shoes worked. She even smacked Sosie again, and with me it was an all out beat down :( Thank God Sosie was there with her great fashion sense. Anything I picked up or suggested was immediately met with, "NO!!! that's ugly!" Finally, after the poor sales girl had gone through about 20 boxes, Sosie helped Nina find a beautiful pair of pink sandals!! With her new sandals and dresses in tow, Nina suggested ice cream!! We were all relieved that it was ice cream and not screaming!!!!!!







When we got home, Todd was already there. Nina was so happy to see him. Teddy took out his Star Wars guys and started to play. I then noticed that Sosie had disappeared. I looked around and found her in Nina's bedroom, laying across the bed. I knew what was happening. I walked in and shut the door behind me. I crawled up next to her and kissed the back of her left shoulder. I heard the soft sound of tears and sniffles. I looked over at her beautiful face and caressed her cheek and asked her to talk to me.

Talk she did!! We talked for over an hour. We talked and sobbed and talked and sobbed. In sum, Sosie realized Nina is dying right before her eyes and she was full of pain because all she wanted to do was make her happy and didn't know how to!!! I just held her and told her how much I loved her, how incredible she was, and how much joy and happiness she brought to Nina's life. Our conversation was long and profound. Sosie is suffering just like the rest of us, questioning how this could be happening to a small innocent little girl and doubting her ability to do anything to help the situation. She had lots of questions about how the tumor was causing Nina's illness, how it was killing her, how she would die, would she be in pain, what would happen to Teddy.

Then the really big questions came. She sobbed and asked why God wasn't healing Nina and why He had allowed this to happen. I explained that we shouldn't lose hope, that I will not lose hope for a miracle until Nina takes her very last breath. Until then, we must continue to hope. I also added that God did not cause this illness, it is simply part of the sadness that life can be sometimes, that on the contrary God's heart is breaking like ours and that He is crying right along with us. Sosie cried and asked why would something like this happen. This is the hardest question to answer because we are all burdened by it. I did my best to explain what I sincerely believe. I told her that we will more than likely never know the purpose of Nina having this tumor and that we can drive ourselves nuts trying to figure it out. I do believe that there is a purpose, however, we lack God's ability to see all of history and time. I explained that Nina had already transformed us all and that each transformation has now changed the course of history, making impacts that we may never see for generations. I told her that perhaps Nina's illness would transform her so profoundly that it would compel her in ways that she would have otherwise never been open to. For example, maybe because of her own journey with Nina, Sosie would decide to move to Santa Barbara or LA and pursue a career in fashion like she wants to, and maybe years later she'd met someone wonderful and marry him, having a child whose own child would someday find the cure to Nina's tumor. Without Nina transforming Sosie, these things may never happen. What is hardest, I explained, is that we have no answer the "purpose" question. It is simply an awful terrible and unjust thing that happened.

I also added that it is okay to be heartbroken and grief stricken, that if we lose Nina we will always live with a piece of our hearts missing. However, I also emphasized that we have two choice, letting this tragedy destroy us or owning our sadness and then stepping forward to create happiness and bless others. I explained that as Nina's mom this is the cruelest and most painful of roads, but that I refuse to be destroyed, that I will spend the rest of my life modeling to Teddy and her and her siblings what it means to have a grateful heart and strive to create some happiness in the midst of this terrible and sad world. Then Sosie said something to me that shook me to my core. She looked at me with those perfect blue eyes and told me she understood and that every time she spoke to me or read my blog she was amazed and inspired by me. I just started to sob and reached for her hand. She then said that she admired how strong and fierce I was about being positive and that she wanted to live her life the same way. I could not believe my ears. This rascal that I had helped potty train and spent so many hundred of hours praying for now admired me!!! I cried and cried and kissed her over and over again! It seemed like we cried for years but it was only an hour. We wiped our tears and eventually made our way back to the kitchen to start on her homework. I was so thankful for this time with Sosie. It was humbling in every way!!!!

Our day had started hard and it maintained it's difficulty until well past midnight. Teddy and Sosie completed their homework while Nina screamed at Todd for practically every reason. Danny returned at dinner time and brought everyone Panda Express! Although she was happy he brought Panda, the plate Todd put it on was totally wrong. SMACK she struck the plate almost sending it out of Todd's hand. I remembered why she was screaming and suggested that we put her food in the container. Nina does not want to be treated like a baby. She wants to be a big girl and eating food out of a tray is way cooler than on one of mom's plates!

Unfortunately the screaming did not subside :( The screaming and yelling was so bad that it kept poor Teddy up for 2 hours. During this time, he tossed and turned in his bed and I did everything (tickling, back massages) to help him relax. Downstairs I could hear Nina screaming at Todd, Danny and Sosie. "I'm starving!!!" she would yell and they would offer her a litany of choices but none were right!!! I could hear the desperation in their voices as they searched through every cabinet, nook and cranny. Once Teddy was asleep I went downstairs and spoke with Nina. I asked her if she wanted yogurt and she said no. Then I asked her if she wanted a banana and Taco Bell and she immediately stopped screaming and nodded affirmatively. Quickly Danny have her a banana and ran to Taco Bell. Later when he returned he told her he had literally been the very last costumer and that when he left the employees had locked the doors. Phew!!!! That was a close one!!

Danny returned with T-Bell and we all munched, no one happier than Nina. It took her another 1.5 hours before Nina finally fell asleep. During this time, Danny either discussed the moral and political implications of the Jersey Shore with Sosie or just sat in the kitchen and sent me ridiculous texts to make me laugh. Either way, it was a delight having his company. Danny is a friend we can count on and it was wonderful to have him here. Danny is also a friend who is a rascal and he was determined to take me out for some fun. Unfortunately, by the time Nina fell asleep everything in SB was shut down except for some really creepy bars that neither of us were eager to step foot in. So instead....he gave me a warm hug goodnight :) A warm hug goodnight from an old friend (literally and figuratively speaking!) was exactly what the doctor had ordered!!!!

Wednesday, February 16, 2011

A Good Night

We added a type of Vicadin to Nina's meds last night. The vicadin with the Atavan was definitely the right combination because she got more rest than she has in almost 4 days!! She insisted on having Todd cuddle with her again and having me and Yvonne nearby :) She must have woken up a handful of times, but for mere seconds and then she would return to sleep. Her breathing is much calmer too!!! I doubt Todd or Yvonne got much rest because I heard them tossing and turning all night, but I did. I literally passed out around midnight. Yvonne practically had to tuck me in. I feel refreshed, amazing what more than a handful of hours of sleep can do for you :)

My prayer is that Nina responds to the increased steroids and the new medication. All of our family is coming in this weekend to celebrate her birthday!!! She has been looking forward to her birthday for months!!! And we have SpongeBob and Patrick decorations piled high!!!

To all the thousands who are praying for our honey girl, please continue to pray for healing but also pray that Nina gets the joy of being happy and peaceful as she is surrounded by her family and we celebrate the miracle that her life is!!!!