Thursday, September 30, 2010

Recovery from Radiation- Part II

In this second clip, Nina has woken up. She is a bit crabby at first but then quickly becomes happy once she is able to start eating. Each day prior to treatment she gives me specific instructions about what she wants to eat. Usually this consists of a couple of different items :) What can I say, the girl likes a smorgasbord! Whatever it is, we are happy to get it for her.

After she wakes up we normally have about 30 minutes to kill so I spend it feeding her and telling her more silly stories. The MO is to keep her happy! Once she has food that is much easier to do :)

Recovery from Radiation- Part I

This is the first video documenting Nina's recovery from sedation after her radiation treatment. Normally it can take Nina up toward 20-30 minutes to wake up from the sedative once she is back in the room. Cindy and I do everything we can to help wake her up but she is just so tired and would prefer to sleep.

Usually I will do things such as brushing her hair (which she despises) and/or use damp wash cloth to wipe her face in an effort to stir her a bit. If these things fail, then I will place a damp wash cloth underneath her arm-pits (she does not like this!) and this will usually help move her along. Once awake, Nina is mad for a few minutes. I can't blame her. She is hungry but she is also disorientated. Poor girl! She is sedated 5 days a week. It takes a lot out of her.

The biggest challenge is to get her to take a sip of water (any liquid really) once she does wake up. The doctors insist on this to make sure she can swallow, but all she wants is her breakfast! When Nina is allowed to eat her breakfast then all is good in the world again :) We are so proud of our honey-girl!

Day 37

Thursday September 23, 2010

Laughter is a wonderful thing! I love to laugh. One of the reasons I fell in love with Todd is because he loves to laugh as well. A sense of humor is a precious gift, one that I believe not enough people have nor appreciate. What is more, laughter often conveys more information and meaning than some of the words we say to one another.

Both of our children love to laugh as well. In fact, much of our time together as a family (nuclear and extended) is spent in playful banter and exchanges. Over the past year, Teddy has been transforming from the one who is laughing to the one is doing and saying things that cause the laughter. It is really amazing to watch this transformation because if you really think about it, when you are trying to make another person laugh you are really trying to bring them momentary joy. How cool for a little boy to want to bring joy to others!

Then there is Nina. To say that Nina loves to laugh is the understatement of the year. Nina's appetite for laughter is only matched by her appetite for real food :) In other words, Nina really loves to laugh. Not only does Nina love to laugh, her laughter is contagious, it always has been. I vividly remember the first time Nina laughed. She was barely two months old and we had just returned from a trip to Holland to visit our dear friends Yvonne and Robert and their two boys. I was sitting in the bathroom with Nina, cleaning her face with a warm wash cloth. As I wiped her mouth, I started to make some funny faces and sound effects (I love sound effects!) and then it happened....she laughed...the sweetest, most delicate laugh! I shouted out to Todd who was really bummed that it hadn't been him who had first made her laugh :) We then spent the next 30 minutes trying to get her to laugh again, to no avail.

Bottom line, when Nina laughs you can't resist but laugh right along with her. It is the kind of laughter that gives you a momentary high from feeling so happy. Over the course of this past month, especially the last two weeks, I have been studying Nina and discovered that her laughter comes in many different forms. There is the "that is the most hysterical thing ever" laugh, the "Wow I'm kind of embarrassed for you" laugh, and even the "You are crazy but I love it" laugh.  Then there is my personal favorite, the "Holy smoke I can't believe that you are actually doing that" laugh. I especially love this laugh because there is a twinkle in her eye, like she knows that what is happening right before her eyes and is causing her to laugh is special, goofy, and maybe even a little naughty :)

This morning as we drove to radiation, Nina kept laughing. I would look at her through the rear view mirror and she'd start laughing...the "Holy smoke, I can't believe that you are actually doing that" laugh. When we'd make eye contact, she'd even avert her eyes in an effort to control her giggles, but it was useless. She literally laughed the entire car ride to the Cancer Center. As we pulled off the freeway onto Mission Street, she looked at me through the rear view mirror and said, "It is funny when grown-ups where pull-ups!" It if funny when grown-ups where pull-ups, especially out in public!

Okay before any one freaks out, I was also wearing jeans...over my pull-ups. You see, Nina was having chronic accidents. Dr. Brennan had ordered a urine sample to see if she happened to have a bladder infection. In the meantime, I had asked Nina to wear a pull-up until we were done with Cindy. I had made her a promise the night before that whenever she had to wear pull-ups that I would too!! A promise is a I was....driving to my mini-van.....wearing my rockin' skinny jeans and pull-ups!!! On our way to radiation, I called my father-in-law and told him about our latest escapade...and I told him that I finally had junk in my trunk (just like him...hee-hee...) to fill out my jeans :) Let's just say that he laughed so hard he almost choked on his coffee. I didn't feel too bad. He had sent me an email earlier saying:

Rosy- I'm not coming down there again until you promise me I won't see you in Pampers!

He has no idea what is coming his way :) I've ordered him some adult size Batman training pants!

Anyway, Nina's laugh was priceless. She totally got it! She knew just how outrageous and ridiculous it was for me to be wearing pull-ups. But on the same token, she understood that I was doing so because I loved her so much. How cool! She had always been a perceptive little girl. When this nightmare began to really unravel mid-August we lost that little girl in less than 48 hours. Now, because of radiation, medication, and prayer, we had her back! We were/are so grateful!!

When we entered the Cancer Center, we were immediately greeted by my friend Katie, who was joining us for the day. Nina didn't waste a second...she immediately informed Katie that I was funny....and that I was wearing a pull-up. Katie initially looked at me slightly confused...wondering if Nina was joking around or being serious. When I confirmed Nina's announcement, Katie couldn't contain herself. The best part was that Katie actually checked out my pants!! In fact, since posting my foray into pull-up wearing, pretty much every time I run into people I know, I get the weird....Like are you wearing a pull-up right now? kind of look :) It cracks me up!! And as long as it cracks up Nina I will keep doing it!! There are no limits to the ridiculous and outright goofy things I am willing to do to bring joy to Nina, irrespective of how long that joy may be. We are whole-heartedly committed to bringing Nina as much happiness as possible!

Since we were running late, there wasn't much time to chat with Cindy about mama's goofiness first thing in morning. But Nina didn't skip a beat. After she had her belly full from eating pancakes and fruit salad following treatment, Nina informed Cindy about how funny her mama was. Cindy looked at me with her beautiful dark brown eyes and smiled the most approving smile I have had in a long time! She recognized that I was just a desperate mom trying to make her child happy, irrespective of personal humiliation :)

We returned home to our normal routine...lunch, movie, cuddling, laughing, waiting for daddy and Teddy to come home. Larisa came by in the afternoon. She too looked at me facetiously but didn't resist inquiring about my pull-ups status :) This situation is a complete nightmare, no doubt about it! But I do love that people can still allow themselves to have fun with us, to joke with us, to laugh with us. We are constantly aware of the storm cloud hoovering right over our heads but we will not turn away from a single second of joy, happiness, and laughter!

Our evening was lovely. I dropped off Nina's urine sample at the lab right before dinner. Dinner was once again marvelous and such a blessing! Teddy finished his homework packet and then showered. Nina bathed, this time with less crying about the water temperature; I just made sure the water was tepid. Teddy practiced some reading with me. Todd told me how amazing Teddy was doing with his anxiety; on their own they had decided to practice having Teddy walk to the school corner and meet Todd at the car, instead of Todd walking to the classroom and picking him up. As Todd told me of this marvelous accomplishment, Teddy beamed with pride! We kissed on him and told him how extremely proud we were! He proud of himself!

Nina and I brushed our teeth and said goodnight to the boys. Nina put on her pull-up and I....I put on mine. As I crawled into bed with Nina, she looked at me and started laughing! I kissed her glistening lips and thanked God for her laughter!

Then I had to adjust my pull-ups...they were on a bit crooked! Nina laughed!! I was happy!!

Wednesday, September 29, 2010

Radiation Treatment- Part II

This is a second video of Nina prior to treatment. It's a continuation of how we spend our morning keeping her entertained. I love her laugh and am willing to do anything to hear it! In this clip, I'm retelling a story from the previous day when Nina and I went shopping at Macys. While paying, I was fumbling around in my purse. Nina was sitting in her stroller watching her goofy mom search for her identification. As I rummaged through my purse, Nina blurted out, "Mama...hurry up and concentrate!" The clerks started laughing hysterically and so did Nina! She was so proud of herself!! Witty girl, silly mama!

What I also love about this clip is how Nina steadies herself when the doctor comes in! She even tries to say, "Good morning Dr. Weisenberger." Sweet girl!! That is totally a mouth-full :) She is so very brave!!

Tuesday, September 28, 2010

Radiation Treatment- Part I

This is a video of us waiting for radiation treatment to start. It is representative of how we spend our mornings at the Cancer Center. For the most part, I need to be super goofy and silly to keep Nina calm and happy, while our nurse and the other staff go about doing what they need to do to prepare her. Even though we have already spent 4 weeks here and she is familiar with the entire routine, she still gets worried so I do everything I can to redirect her attention and keep things bright.

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!

Picnic & Stories

This is a video of Nina and I having a Taco Bell picnic at Goleta Beach on Tuesday the 21st. After she had recovered from sedation, she requested this little adventure! How could I resist? We got taco bell and spent almost an hour hanging out on the beach. I told Nina lots of old stories about her childhood and Teddy's. I've been recounting these tales a lot lately and she adores them! My favorite thing it to make her laugh. Nothing brings me joy like her laughter!

Monday, September 27, 2010


On a daily basis, we are humbled and awe-inspired by the magnitude of generosity our family is being given. In countless ways, friends, family members and total strangers are blessing us daily.

Thousands of people, mostly strangers, are praying for our daughter's healing and our strength across the globe. We get emails and messages from strangers in countries that we have never even visited who have been touched by the strength our honey-girl. We are thankful and we are humbled.

Neighbors, friends, acquaintances, and friends-of-friends that we have never met have opened up their hearts and homes, as well as, lovingly shared their resources with us. We get meals every evening, our dog is walked, our home is cleaned, our hearts are filled with love with each card, text, and email wishing us peace and strength. We are thankful and we are humbled!

Colleagues and mentors, many of which we have honestly done little for, are pouring their love and support into our lives, literally changing the course of our desperation with the smallest of gestures. We are thankful and we are humbled.

Our families and dearest friends, although some very far away, remind us constantly (sometimes hourly) that we are not alone, that we are loved, that our family is cherished, that they stand next to us, carrying this heaviest of crosses, unwavering with commitment to us in our greatest hour of need. We are thankful and we are humbled!

Our life has been obliterated in practically every aspect. Just when we think things can't get worse, they do. For a while there, I began fearing that my heart would be hardened to the cruel circumstances surrounding us, but God is good!!! He has surrounded us with an army of family, friends, and strangers who are ceaselessly praying for and loving us. How can my heart harden when this is what is happening? How can I do anything other than offer the deepest, widest, and most brilliant of "Thank Yous!" to all who have shown us the most amazing generosity. Thank you, thank you, thank you! You are all God's angels in our lives and we thank Him for you and pray for only health and joy for you and your loved ones!!


Sunday, September 26, 2010

Donut Diva II

Finally....Nina gets her donut!

Donut Diva I

So on Tuesday the 21st, Nina decided that she needed a donut :) This is the first of two videos documenting our Donut Diva choosing her treats and then enjoying the sweet taste of victory! What is particularly noteworthy about these videos is the level of movement, enthusiasm, and interaction Nina was engaging in. We are so happy with her progress and can't thank God enough for each precious moment!

Day 35

Tuesday September 21, 2010

Nina woke up early this morning, 7am to be precise, and asked for two things. First, she said she wanted Adelae (her cousin) and wanted to know when Adelae could come for a sleep-over. She had been saying that she missed Adelae for a while now but now she wanted her. The tone in her voice made it clear to me that she needed Adelae. Aside from Teddy, no one can bring happiness to Nina like Adelae can! I knew what I needed to do. Second, Nina said she wanted to go shopping! This was going to be a good day!

As I scurried around getting our things ready, an idea began to emerge. For the past couple of weeks Nina and I had been doing artwork together. We had been painting a ton of canvas' with her hand prints and giving them as gifts. I knew our family members and friends would love them. I had also been trying to collect as much video and photos of Nina and especially Nina and Teddy. But I hadn't really been able to think of something truly special that Nina could do for Teddy...that is until now.

I want to make it very clear that my hope is for Nina to be healed. Even when I am not actually physically producing the prayers for healing and a miracle, each beat of my heart, each neuron that fires in my very own brain is reaching toward Heaven in a constant prayer. God does not need me to mutter a single word. He created me and knows how every molecule that comprises my being is begging, pleading, believing that this miracle can happen if that is His purpose. With that being said, I know that there are people in my life that think that I am submitting to weakness of faith by simply acknowledging that there are two distinct paths to this journey. Let me make myself faith has never been more real to me, more concrete, more palatable, more alive. I do believe in miracles....God has already given me two, my son and daughter. But as I have said from the beginning of this journey, I cannot be blind to the fact that Nina is gravely ill and that I must do everything to prepare her brother for the possibility of a lifetime without her.

Consequently, this idea began to grow in my mind. What if I took this time with Nina and had her choose gifts for Teddy that he could get at every birthday and for important milestones, like high school and college graduation, getting married, etc. As I assembled Nina's meal for treatment, a plan began to form. I would shoot for collecting 50 gifts (for birthdays and milestones) and have Nina either take a photo or video with the gift so she could send him a little message. This way, for at least a couple of decades Teddy could always get a gift from his sister and know that even from Heaven she was thinking about him. I emailed some friends and family members to get their opinion. Some were overwhelmed by the thought (I do recognize that it is a bit morbid right now but could be such a blessing in the future) and others completely excited....nonetheless everyone agreed that it was a good idea. I was happy to have a project and I knew Nina would love to shop for her brother.

After she woke up Nina dictated that she wanted me to take rice crispie cereal for her after-treatment meal. While we drove to the Cancer Center she added that she would also like to get sugar donuts (as if there is any other kind???). Nina has always been a child that knows what she wants. I really do admire that about her, now more than ever! What I admire most is that she doesn't fear telling us what she wants, even when she probably knows the answer will be "no". I want to be more like Nina and ask for the things I want and the things I need. Too bad I'm not a cute 5 and 3/4 year old cherub :)

For the first time since starting radiation, Nina did not want to watch a Tinkerbell movie. Instead she chose Sponge Bob. I have to confess that the stupid show is beginning to grow on me, particularly Patrick :) I guess anything is capable of "growing on a person" if you're exposed to it enough....can any one say habituation??? We watched Sponge Bob and got through treatment and recovery smoothly. By this point, all of the anesthesiologists have obviously talked to each other about our case because everyone (regardless of whether it is their first time with us or not) follows our protocol flawlessly. It is a wonderful thing to be so supported!

After Nina finished her rice crispie cereal, she turned her chubby face (so puffy from the steroids), smiled and said, "I want to have a Taco Bell picnic at the beach!" Man on man was this going to be a great day or what! We got dressed and went on our first assignment: Donuts! The Donut Diva needed a sugar donut so off we went. We went to Spudnuts where she was awe struck by the myriad of choices. It was amazing to see her move around, talk, smile, and interact with people. I felt like we were getting our Nina back and I praised God for every second of it!

After Spudnuts, we went to Macys and did a little shopping. Nina picked a few items for Teddy: a blanket, some beach towels, a wallet, a silver platter (wedding gift) for "crabby patties". It was so much fun. The best part was when I was trying to pay for the wallet and couldn't find my id. Nina was sitting her in stroller watching me fumble around in my purse. I heard her sigh and then she said, "Mama...hurry up and concentrate!" The two clerks immediately burst into laughter. They asked her how old she was and she said 5 with the biggest grin possible. What a stinker! 5 year old scolding me and reminding me to CONCENTRATE!!

What was perfect about my idea this morning is that it will be Teddy's birthday in a couple of weeks so collecting all of these gifts won't be something totally weird for Nina. As we walked around the Brookstone store, Nina spotted an aquarium with tiny African water frogs in it. She turned to me and said, "Teddy would like this." She was right. He would love it. I asked her if she thought we should get him an early birthday present and she nodded affirmatively. Nina had always been a giver. It was breathtaking to see that even when she didn't feel well she thought of others, especially her brother.

We bought the froggies and made our way to Taco Bell. Unfortunately it wasn't the most beautiful of Santa Barbara days. It was cloudy and overcast but it didn't put a damper on our plans. We picked up T-Bell and off to Goleta Beach we went. The beach was practically empty. It was nice to be alone with the crashing waves and hundreds of on-looking seagulls :) We reminisced about funny beach stories. Nina is really enjoying hearing stories about herself as a baby and hearing funny stories about our family adventures. It is particularly sweet to hear her try to retell them to others! I am always surprised by just how much detail she actually remembers!

After our picnic, we went home and joined daddy and Teddy. Teddy had a play date and homework to do. Nina lounged on the bed in the living room. She had a very busy day, probably the most active in weeks. But she didn't complain or cry. She just said she wanted to rest and watch some movies. Thank goodness for Netflix streaming! As Nina relaxed with some videos I ran some errands. There never seems to be enough time in the day to accomplish every thing I need to do. But then again, there actually is little I really need to do!!! What I need to do is spend time with our kids...everything else can wait!

After dinner, Nina gave Teddy his froggies. I have realized that Nina cannot keep secrets. As soon as Teddy came home, she spilled the beans. He was so excited and kept telling Nina what a wonderful sister she was. Nina beamed with pride! She vacillated between naming her frog Sam and Sally, while Teddy named his Cody. They played and talked about the frogs for almost an hour. Todd and I loved to see them together! Nothing makes us happier or brings us more joy than seeing our two children love each other!

Taco Bell picnic at Goleta Beach...Yum!

Day 34

Max & Nina

Monday September 20, 2010

Today our radiation appointment wasn't until 12:30pm. It is a nightmare when we can't have a morning appointment. To try and minimize the starvation craze, I moved our midnight meal to 5am. We had a full on feast of rice crispy cereal, vanilla yogurt, toast with home-made strawberry jam, and grapes. Nina ate a ton and asked for seconds on the toast. As I wiped her face she said, "Jam is good!" I love how she makes the most wonderful of proclamations. Jam is good! We should all have jam on toast at 5am more often!

I tried to keep her up as long as possible so that she'd sleep in. She did sleep in...until 9am. Then I had 3 hours to fill before we could even consider getting into the car. On previous late start days, I had tried to distract Nina by taking her out for a drive or a stroll through town. The problem is that there are reminders of food everywhere and she starts to panic and get really angry! I never realized just how much advertising for food there is until my food-obsessed daughter pointed it out to me!

So...this time I decided we'd camp out in bed and watch a movie. This shouldn't be too hard, how much food can there be in a movie?? Well...a ton...if it's Ponyo. That's what Nina selected...Ponyo. Ponyo is a darling movie but holy smoke is there a ton of food in it! Every thing looked really good...especially the ham sandwich (Nina already is a big fan of pork) and the noddles. She turned to me and said, "I want to have a ham sandwich and noddles too!" Great! I had no ham at home and no Japanese noddles. Go figure! I had spent a bunch of time the previous night packing up carrots, yogurt, cereal, and a fruit salad but now that was out and ham and noddles were in! Darn it! Maybe she'd change her mind :) A mother can always dream!

After Ponyo was over, Nina turned to me and and said, "I want ham sandwich and noddles." Okay, ham sandwich and noddles it was. We got dressed and drove over to a local Asian market where we stocked up on noddles and bought two authentic ceramic noddle bowls just like in Ponyo. Nina looked at me and through her chipmunk cheeks said, "This is going to be good!" We payed and strolled out of the store. We hadn't even taken 10 steps when Nina proceeded to grill me about not forgetting the ham, "Mama I want a ham sandwich after Cindy." Everything Monday-Friday was about After Cindy :)
We strolled another 50 feet and bought some delicious ham at South Coast Deli. As I loaded Nina into her car seat, she asked if she could have a bite of her ham sandwich. I smiled as lovingly as possible and said no. She looked down and mumbled, "After Cindy." I laughed and kissed her forehead, "Yes, after Cindy!"

As we drove to the Cancer Center, I turned on the radio so we could listen to some music. Nina loves music and has always loved to sing and dance. We listened to a couple of songs without much fanfare. Then it happened....we found our theme song!!! I had never heard it, but as soon as it came on Nina proclaimed, "I love this song!" and started to dance. Right then and there I knew we had found our theme song. The song was "The Sound of Sunshine" by Michael Franti & Spearhead. Nina just giggled and danced in her car seat. I looked at her through my rear view mirror and the largest lump grew in my throat. She was the sound of sunshine personified! Everything about her, even in illness, was sunshine!

At the Cancer Center, Nina eagerly told Cindy all about her plans to have a ham sandwich and noddles. Every morning when we enter through the front lobby, the secretaries asked Nina what is in store for breakfast and lunch. Every single staff member in that center had come to know how important Nina's meals were. It was a source of pleasure for everyone because they knew how it delighted her. She was impacting everyone around her....even virtual strangers!

Treatment went incredibly smooth. For the first time ever, Nina asked to go to the "other room". When she said this, she was asking to be taken to the hallway directly outside of the radiation room where the anesthesiologist meets us and then gives her the sedative. Cindy turned to me and smiled. It warmed both of our hearts for Nina to say that. Although she wasn't able to recall what happened in the actual radiation room because of the amnesic effects of the sedation, she had figured out that when we strolled her there it meant food was closer :) She is so smart and incredibly brave!! Like her brother said, she is the bravest girl in the world!

By the time we were done with treatment, it was almost 3pm. Nina declared that we needed apples and baby carrots so we said goodbye to Cindy and went to Vons. I now understand why my initial shopping trips to Vons after the diagnosis were so hard for me. Kind of strange that a grocery store would cause such deep grief but it wasn't the actual store, it was all of the time Nina I had spent there together. Immediately upon her birth if I had a choice of children to take grocery shopping I would always choose Nina because she was much easier. As Teddy got older and started preschool, Nina and I would be on our own and do all the meal planning and shopping together. The last two years (since Teddy started elementary school) I would pick up Nina from preschool at 1pm and then we'd either go home and prep that night's dinner or we'd go to Vons to pick up any missing supplies. Grocery shopping was one of the most prevalent routines in my life with wonder it was hard to do on my own or even imagine having to do it forever without her company.

On this Vons trip, I was happy and wanted to relish it! We meandered from aisle to aisle. She would eye something desirable and request that I purchase it. I gladly obliged! We left with baby carrots, apples, celery, Cheetos, Cesar salad, wheat thins, and rice crispie cereal. Nina was very happy so consequently I was happy too! Her happiness reminded me of something a very wise man once said to me, As a parent you are as happy as your saddest child. The man who told me this has a child with autism and although at the time I remember being empathetic to what he meant I didn't truly understand the depth, magnitude and reality of this statement until now. He was so right!! Since August 19th this was my truth!

We went home and had a quiet dinner with Todd and Teddy. It was so wonderful to have so many people taking care of us and bringing us dinner. This simple act alleviated so much time and stress out of my day. It allows us to concentrate on Nina and Teddy and we are so grateful! Our evening ended with Nina's best request yet...chocolate milkshakes! Todd made the creamiest, yummiest, most chocolaty milkshakes, topped off with whipped cream of course and the four of us sat on the living room mattress as happy as our saddest child, who for tonight was very happy!! We were all very happy and thanked God for it!

Purrfect Buddies: Teddy, Nina & Max!

Beautiful Boy

At Braden's Baptism Party

We have been so consumed with praying for a miracle for Nina that we have almost (but not quite) forgotten about the living miracle that Teddy is! He has grown into such a strong, self-controlled (albeit still goofy and silly as can be:) but we love that about him!) big boy. It makes me sad to not call him "my little boy" as he reminds me not to on almost a daily basis, but he is right...he is not a little boy...he is "my big boy"! We are so proud of him and cannot thank God enough for filling him with love for his sister and confidence in the goodness of life. 

Too cool for mama!

Day 33

Sunday September 19, 2010

My friend Samantha, whose 16-month old daughter Eliana has been fighting a brain-stem tumor for the past year, said it best when she said this journey isn't a roller-coaster, it's more like the insane, rapid-fire peeks and valleys of a seismograph. Yesterday was good, today was tough. We started fading Nina's steroids on Thursday. She did well the first couple of days but today she had a terrible time sleeping. She was up all night practically hallucinating. She was extremely emotional. She was recalling things that had happened 6 even 9 months earlier and reliving them as if they were happening right in front of her.

I felt so bad for. She was like a junkie going through withdrawals. I tried to convince her everything was going to be okay, that she was in bed and that her dreams were over with but it didn't work. Several times she looked right through me, as if I weren't even in her presence. It scared me! Normally I wouldn't have cared if I were up all night with her but I was bummed because today was the day our friends the Becchios were having their son Braden baptized. Todd and I were suppose to be the Godparents but now with Nina doing so poorly Todd and Teddy would have to go on their own. Things always seem to work this have something you'd love to do and then....squash...there go your plans!

Nina and Max resting

While Todd and Teddy went off to mass, Nina and I cuddled on the living room mattress. She was extremely tired and it was very hard to motivate her to interact. I desperately tried everything but nothing seemed to work. Then I asked her if she'd be interested in going on-line and looking up Halloween costumes. She perked up right away!

Nina loves Halloween and she loves dressing up! About two weeks ago she had decided she wanted to have a fairy-themed Halloween, partially because she had spent the last month watching all the Tinkerbell movies over and over again at radiation and partially because you can't get more girlie and sparkly then with a fairy costume! Aside from picking out her own Tinkerbell costume, Nina had decided that I would be Queen Clarion and that daddy would be the Fairy King! Normally Todd would have said no-way/no-how, but now...he was mush in his daughter's hands and agreed :)  During radiation treatments, Nina and I had spent hours laughing at the prospect of Todd in tights! For years I had tried to get Todd to take me to a Jane Austen Regency Ball but he refused...he pretty much disliked the entire idea....but especially the thought of having to wear very snug britches. Now...he was going to wear tights for his daughter :) Who says revenge isn't sweet?

So...Nina and I got the computer and proceeded to go on-line and look at costumes. Within a few minutes Nina had decided which Tinkerbell costume she wanted. Then she asked to look for dada's costume. Nothing could have made me happier :) Then...we found it!!!

There we were, the two girls, sitting on the mattress scrolling down the pages of costumes when we stumbled on the most hilarious image our two sets of eyes had ever seen:

What happened next will always be one of my most favorite Nina memories! She started laughing the most intense and deep laugh I have ever heard anyone laugh. She laughed and laughed and laughed. She laughed so hard, her left eye squinted shut and she shook violently, producing no sounds for about 10 seconds. She laughed so hard that eventually she toppled over!!! I laughed right along with her, both in response to this ridiculous imagine as well as to the pure hilarity coming out of my precious daughter. 

She took a deep breath and tried to sit up. She looked at me, face flushed from laughing so hard, and said, "Dada is going to die!!! He is going to freak out!!" She was right!! We started to laugh some more and then ordered the tights. We must have laughed for at least 20 consecutive minutes. We kept imaging him putting these outrageous things on and walking out the house with his bodacious thighs covered by nothing but bright green nylon! It was too much!! I tried to get Nina to promise me she wouldn't say a word to Todd but she kept saying she had too! "He is going to freak out!!" she repeated, while wiping the drool that was falling from her mouth because she was laughing so hard.

Mere moments after we had composed ourselves, Todd and Teddy returned. Todd walked into the living room and said hi to Nina. It was too much! She looked at him, burst into laughter, and hid her face in the pile of pillows next to her. Todd tumbled next to her, laughing as well, but still unaware that he was the butt of the joke! He asked her what was so funny and she just shook her head, laughing heavily. I warned her to not spill the beans but not no avail...she looked at Todd and said, "You're gonna freak!" Todd looked at me and laughed right along with her, eventually figuring out it had to be something about his costume. After a few minutes, she looked at me and asked me to pull up the picture of his tights. I complied :)

The look on Todd's face was beyond priceless!! I wish I would have videotaped it!! It was a weird combination of horror, dismay, disbelief, wonder, amusement, and flat out...HOLY SMOKE!!! What was best was how Nina kept covering her face in the pillows!!! She was so amused but also understood the implications of her father wearing such an outrageous get-up!!! I have always appreciated her sense of humor, but it was taken to a whole new level!

Our day had started off terrible and been perked up at Todd's expense :) Being the great father that he is, he agreed to wear the tights. I bet he'd take wearing britches any day over the prospect of wearing these green tights!!! Our day ended with fatigue and constant little naps. The dreaming and near-hallucinations subsided. Nina went potty produced something we only thought Paul Bunyan capable of but alas our precious 5-year old honey-girl did. When she was done, she smiled and said, "My belly feels better!" Sweet girl!!

We thanked God for BMs, laughter and for sleep! I also secretly thanked God for men's bright green tights!!! I think Nina did too :)

Saturday, September 25, 2010

Day 32

Saturday September 18, 2010

I have discovered that there really isn't anything I won't do for Nina. In fact, I think the entire world is willing to do what Nina wants :)

We woke up bright and early. So much for sleeping in on the days we don't have treatment! Isn't that how it always works?? On school days, kids always want to sleep in. Then on the weekend when they could actually sleep in, they're up at the crack of dawn. I've never understood it!

Nina woke up early and asked if she could eat. I think she has grown so used to me saying no because we have to see Cindy and the doctors that she was genuinely surprised when I said she could go eat. I was so tired I texted Todd to see if he was up. This is how lazy we have become. Instead of walking the 30 feet to where the other one is, we text!

What is particularly funny about this is that up until a year ago my husband refused to even have a cell phone. For years he expounded about how ridiculous it was to have a cell phone and that he didn't want anyone to be able to get a hold of him. All this changed when I got him an iphone. Since then, the man has been obsessed with collecting cool apps for his iphone, including the Facebook app so he can upload photos instantly. I love to make fun of him but then again I am the one texting him from the other room :)

Todd's best friend Dan had arrived to spend the weekend with us. Todd and Dan had basically grown up together and were brothers in every sense of the word. I was happy that Dan was here. Todd needed to have time with his best friend and Dan's antics were a welcome distraction. We had always loved to laugh and have a good time but now more than ever, laughter was healing, especially our children's laughter!

Within a few seconds of my text, I heard Todd rattling around upstairs. I told Nina to call out for her daddy and she shouted in the sweetest of voices, "Dada, I'm hungry." Todd walked into Nina's room and gave her the most brilliant of smiles. When she looked at him it was like she was looking at the sun! She radiated happiness in her father's presence.

For years, Todd has been in charge of Saturday morning breakfast (sometimes we even get a double treat with Sunday morning breakfast a la Dada!). Todd's breakfast menu usually consists of something buttery and syrupy! No wonder the kids adore him :) Nina loves her daddy's breakfasts. Today it was pancakes with whipped cream, lots of syrup, and bacon. I loved listening to Nina and Todd chat in the kitchen. Teddy was still asleep upstairs so sister had daddy's undivided attention.

Nina's voice has changed since starting steroids. She has always had a bit of a husky voice, but now it was a few octaves higher. She now sounds like she is several years younger. When she had returned from Cedars she spoke very little. Over the course of radiation treatment and steroid reduction, her energy had returned and so had her chattiness.

In the kitchen, Nina asked if she could stir, if she could flip the pancakes, and reminded Todd about 10,000 times that she wanted syrup and whipped cream. Oh, and she frequently reminded him that she liked bacon.

Nina: "Dada, I love bacon."

Todd: "Yes honey, I know."

Nina: "Dada, I love bacon."

Todd: laughing "I know you do sweetie. It's yummy isn't it?"

Nina: "Dada, I really like bacon. It's yummy!"

Todd: laughing really hard "Yes honey, I know."

Nina loves her bacon. That is clear! But she loves her dada even more. I couldn't go back to sleep, but it felt great to just lie in bed. I listened to Todd and Nina for a long time. Nina giggled a lot. Her giggles filled the house. We hadn't appreciated her laughter enough before this all happened. She was our gregarious girl...always talking...always laughing. Sometimes it even annoyed us. How sad! Now we just delighted in them!

Funny how with one child you can delight in all they do (even the annoying things) because you are so terrified you're losing them, while with the other child you forget that all of their behaviors are equally precious, but you forget because there is the false sense of security, that they will be around forever. I have caught myself multiple times hushing Teddy because he is being too silly or getting too loud. I'm not saying that you can't reprimand your child or tell them they are getting a bit too's just that there are better ways of doing so than hushing them, making them feel bad. Nina is teaching me to be a better parent to Teddy; too bad the learning curve is so slow!

Lounging on the living room mattress!

About an hour after Nina had finished her 7-course morning meal, Teddy came downstairs. I joined him along with Todd, Dan and Nina. I felt good to just be sitting and watching everyone buzz around me. Nina and Teddy cuddled on the living room mattress watching The Suite Life on Deck (at least it wasn't Sponge Bob!). Nina turned to me and said, "I want chicken for lunch!" I laughed. The girl could not stop thinking about food...nor the blasted chicken from Las Fuentes. For the past couple of weeks, Nina had been asking me for chicken. I'd gotten away with redirecting her to other wonderful chicken dishes but I knew very well what she truly wanted! What Nina wanted was Arroz Con Pollo from Las Fuentes Restaurant in Reseda, California. Las

As soon as Nina formally announced her lunch request, I turned to Todd and told him I needed to go to Las Fuentes. Todd looked a bit puzzle but Dan, the consummate lawyer, jumped in and said that a long drive to LA might be a good way for me to clear my head, to get a little "alone time"! Friends....aren't they great....always looking out for you:) Truth be told was that Dan LOVED Las Fuentes as much as we did and hadn't had it in about 2 years. Consequently, he was beyond stoked at the prospect of having some for dinner. With Dan's enthusiasm, everyone else in the family jumped on board with my plan, so off to LA I went. I drove an hour and a half to Las Fuentes, picked up the incredible food, and then drove another hour and a half back to SB.

As I entered Montecito I was so proud of myself! I felt like a great mom! Here I was driving 3 hours to get my daughter her most favorite food in the world. Then, just like that, my bubble was burst. Todd called me and informed me that Nina wanted Chicken on a Stick from Your Place Thai Restaurant on Milpas Street. WHAT?????? I had driven 3 hours and now she was making a menu change? Her Royal Highness had gone to far! I informed Todd that he must have misunderstood her. He disagreed but I would not be convinced. I arrived at home and with complete and total confidence and satisfaction showed Nina what I had accomplished....Arroz Con Pollo!!! She looked at me and said, "I want chicken on a stick."

Well....we all had a wonderful meal of Las Fuentes magnificence for dinner while Nina had Thai chicken on a stick (i.e., chicken satay). She did make it up to me when she requested Arroz Con Pollo for her midnight meal. After practically licking the plate clean, she turned to me and said, "You're a good mama!" That's all it took! I'll drive back to LA tomorrow if she asks:)

Day 31

Friday September 17, 2010

My day started in agony.

From 11pm last night until 4 am this morning Nina sobbed and cried and whimpered and yelled in pain. She and Todd must have made well over 150 trips to the bathroom. She had a few successes but the pain was intense and did not dissipate until it was almost morning. I sat helplessly in the living room, encouraging Todd when he needed encouragement. He hadn't seen her in this kind of pain yet. It was excruciating for him. She repetitively whined in pain, "I'm serious it hurts. I have to go poo-poo. I don't want to go poo-poo". Even when she was close to sleep she continued to repeat this trance. I could tell it was killing him one second and driving him batty the next. I knew what he was feeling...I had been is pure agony!

Then everything changed.

She got up in a great mood. Went to radiation without a complaint. Smiled at the anesthesiologist. She did have a low grade temperature again, 99.5 but was all happiness and conversation. Woke up in 20 minutes in recovery. Ate and ate. Talked and talked.

Teddy came home in a great mood too! He was incredibly affectionate with Nina. Kept hugging her, sitting next to her, asking her what videos she wanted to watch. After dinner, he crawled up next to her and kissed on her for a solid minute. He told her, "I love you Nina! You're the bestest sister I ever had. You're the only sister I ever had." Todd's heart sank right before my eyes as he heard Teddy say these words. He left the house. He was gone for 10 minutes. I knew why.

Then Nina asked to go potty. As I knelt at my daughter's feet, I started to think about the lyrics from "Amazing Grace". I have always loved that song, since childhood, but I have not truly understood it, truly lived it until now. In the darkest hours of my life, some of which occurred today, God's amazing Grace has carried me. When every fiber of my being felt like it was going to disintegrate, God carried me. When my hands violently shook with fear, God carried me. When my body was so terrorized that I felt like I was going to vomit, God carried me. When I wanted to run far, far away, God carried me to security. I was lost but now I am found. I was blind but now I see. I was a wretch but Heaven's merciful hand saved me.

I am 33 years old and have lived the majority of my life in the land of opportunity yet I allowed myself to be bound for countless years. Now I found myself sitting on the cold bathroom tile floor, the lowliest of rooms. I stared at my beautiful daughter's face, smiled at her, and wiped away the drool falling from the corner of her mouth. She leaned her swollen cheeks into the palm of my hand and smiled the most radiant and thankful of smiles.

My day ended in bliss! I was free!!!

Amazing Grace Lyrics
John Newton (1725-1807)
Stanza 6 anon.

Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.

T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.

Through many dangers, toils and snares
I have already come;
'Tis Grace that brought me safe thus far
and Grace will lead me home.

The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures.

Yea, when this flesh and heart shall fail,
And mortal life shall cease,
I shall possess within the veil,
A life of joy and peace.
When we've been here ten thousand years
Bright shining as the sun.
We've no less days to sing God's praise
Than when we've first begun.

Thursday, September 23, 2010

A Mama's Got To Do What A Mama's Got To Do!

So Nina has been having a bunch of accidents (#1) this week. As such, I have been trying to convince her to wear pull-ups, but each time I suggest doing so she immediately starts sobbing, saying that she's not a baby and doesn't want to wear one! Of course, my heart breaks that she feels bad about herself so I don't insist any further.

Well...last night Nina went to bed around 7:30pm. Half an hour later she woke up whimpering because she had wet the bed. She was so embarrassed!!! She kept apologizing, almost entirely avoiding eye contact. I hugged her and told her it wasn't a big deal. We tore the sheets off the bed for the umpteenth time and got her cleaned up. Then I suggested a pull-up again. Consistent with previous occasions, she started to cry, "But I'm not a baby!" I looked at her sweet, fat face. She was right, she wasn't a baby. She just fely bad about herself! She hadn't had an accident in years and now was having multiple ones each day!! My poor baby girl. She didn't feel good, her face and body were changing because of the medication, she couldn't go to school because she spent almost the entire day in treatment, and now she was wetting herself! Life was not fair!!! Then the light bulb came on!

The light bulb in Rosy's brain isn't always fact it is off way more than it is on...but when it does flicker on it can produce some pretty good wattage. I stood starring at the cherub face of my humiliated daughter, the solution dawned on me.....I turned to Nina and said, "Nina you're not a baby. Accidents happen all the time. Wearing a pull-up doesn't make you a baby it just makes it easier to clean up. Grown-ups wear pull-ups all the time. Look...I'll wear one too!!" As soon as I said the words, she turned her gorgeous face toward me and flashed me the most perfect of smiles!!! She then lay back on the bed and let me put on her pull-up. I finished getting her jammies on and then excused myself for a minute.

When I returned, Nina was sitting in the middle of the bed and I....I was wearing a pull-up!!!! When I walked in she took one look at me and burst into hysterics! She laughed so hard that she toppled over, falling onto the mound of pillows next to her. She couldn't even say a word she was laughing so hard!! I did a mini-pirouette so she could see I was wearing my very own pair of princess pull-ups!! I jumped onto the bed next to her and grabbed her laughing body. I hugged her tightly and told her that whenever she had to wear a pull-up that I would wear one too!!! I kissed her and tucked her in. She closed her eyes, a large smile still on her face, and went to sleep.

I then composed myself as best as I could and marched upstairs. When Teddy saw me in pull-ups he did NOT burst into hysterics. On the contrary, he looked at me completely mortified and said, "Why in the world are you wearing those??? Take them off immediately!" When I explained the situation to him, he nodded approvingly (albeit with still a hint of total bafflement and sprinkle of disgust) and said, "I gotta go to bed!" Off to bed he went, which left Todd just laughing, shaking his head in disbelief and slight horror. Why my husband didn't find the sight of me in pull-ups attractive is still a quandary for me! Men! I bet when he's 90 and I'm 80 he might change his mind :)

I put my jammies on and proceeded to go downstairs. Each step I took produced a very awkward "scrunch" sound. I laughed at my own insanity and then I recalled reading a chapter in Jay Mohr's book, No Wonder My Parents Drank, back in June where he had described the hilarity of he and his wife trying on adult diapers in an effort to understand why his son refused to potty train. I remember laughing hysterically as he described this scene but more importantly I remember thinking, "Who would do such a thing?" it turns out....I would!!! I proudly marched downstairs! I had told myself weeks ago that I would do whatever it took to support Nina through this ordeal!! Tonight it meant wearing pull-ups!! Bring it on!

I climbed into bed next to Nina and proceeded to text my friends about my latest adventure. All of the sudden, all of my friends had turned into comedians!!! For about an hour I got an onslaught of one-liners and wise-crack remarks!!! Here are a few of my favorite:

1. Well... we all knew that Nina could always "Depend" on you!

2. I hope you don't wake up in a puddle!

3. Just let me know if you need a "huggie". Or if you could use a little "pampering"!

4. Uh-oh time to change you!

5. Bandura would call that social learning theory. You're the best mom ever!

6. Hey if that astronaut can wear one for a week, so can you. Granted she was crazy, but....

7. Does it make squishy sounds when you walk?

8. You might start a trend!

9. Can we have a picture?

10. Come on...send us a photo! We promise to delete it!

What comedians!!! And sickos with the photo requests!!! Apparently all of my friends want to see me behind bars for indecent texting! What kind of company am I keeping :)

All I know is that I love both of my children with every fiber of my being. I would do anything for them. I would give my life for Nina's in an instant. Since apparently God isn't quite giving me an answer to that request as of yet, the least I can do is try to minimize Nina's personal discomfort and even shame. There is no way my precious daughter should feel ashamed for having potty accidents. It is not her fault...none of this is! If I can do something completely insane to make her feel better then I will gladly do it!!

After my SNL buddies quit sending me funny texts, I kissed my sweet angel and crawled into bed. Truth be told...pull-ups are pretty comfy!

Day 30

Thursday September 16, 2010

I was sick!!! I felt miserable. I had felt it all day on Wednesday but had tried to convince myself it was all "in my head"! Well it was all in my was a sinus infection. Luckily, I was able to get antibiotics and some sleep. The worst part of all was that I had to be quarantined from Nina. There was no way I wanted to increase her risk of catching something; I was sure I had already exposed her and prayed that she wouldn't develop anything. On Wednesday she had a slightly elevated temperature of 99.4. This worried me deeply; could her little weak body handle a cold, a sinus infection. I had come to realize that Nina was from now a chronically-ill child and we needed to guard her against anything else that could complicate matters. It sure didn't help that we were entering the cold and flu season....would we ever catch a break???

Since I was sick, this meant that Todd was on Nina duty once again. He told me that the previous day at radiation had gone great. He was very impressed with all the staff at the Cancer Center and was even more in awe of how Nina had acclimated to her new routine. He was so in love with her! It melted my heart to see them together. She had always looked at him with these totally buttery eyes, like she couldn't get enough of his face. It was so precious. Her cheeks were getting fuller because of the steroids, which made her even juicier and I loved watching him kiss her and her beam from delight. Although this meant Todd had to take another day off of work, I was glad he got to do the treatment with her again. It was important for him to be a part of the entire process, even the nitty-gritty as Nacho Libre would say.

My day was spent talking to doctors, particularly Dr. Slomiany, about what the Cedars team and I had discussed. There was much for us to think about, but the main thing was what Dr. Danielpour had said...if we could buy more time (that was good quality not marked by awful pain) by doing the chemo and Avastin then there was  hope. Time meant hope plain and simple. We would take any good time with her and hope for the next step to be revealed. Bottom line was that we had not expected to see Nina do as well as she was doing. We were encouraged and the team meeting renewed our gratitude for the gift of time we did have. Each kiss, each laugh, each dance with her brother was like a precious gem given to us directly from God's merciful hand. We would be fools to turn away any more gems, but we wanted to proceed with caution, thoroughness, and extreme thoughtfulness.

As I walked out of Dr. Slomiany's office I caught a glance of my reflection on the door. I looked awful!!! Not only did I look awful because I was sick but I looked like I barely weighed 100 pounds....I looked like Nichole Richie without the designer clothes....awful!!!! I immediately thought of Linda! I almost called her but then I decided if I did it would only reinforce her. Truth be told, the previous day at lunch Linda had told me she was worried about my weight. When I kind of scoffed she flat out told me I was anorexic and had food issues. At that point I really did scoff, multiple times. She insisted. I negated! We agreed to disagree! The image I had just seen did help not build my line of evidence to contradict her so I decided to go home and weigh myself. I knew she'd be way off base! Well....she wasn't! Damn it!!! I hate being wrong.

I weighed 105 pounds!!!! Not good! I haven't weighed that little since freshman year in high school. I felt like crap, my head was pounding, my sinus' felt like they were going to explode, my body ached, I was exhausted and I wasn't eating! I AM NOT anorexic but I allowed myself to admit that I hadn't been taking care of myself as I should. The reality was that I was not hungry. Food didn't taste like much anymore. And if I ever did get hungry a bit (which was very seldom) the hunger pains kind of felt good....I know that sounds terrible but the pain in my stomach temporarily distracted me from the pain in my heart. I looked at myself in the mirror and commanded that I needed to eat, even if I didn't feel like it. I couldn't get sick again. Being quarantined from Nina was not cool, and I had done it to myself by neglecting basic needs. So....I did what an anorexic would NOT do....went to The Hamburger Habit and finished off an entire Charburger with cheese and grilled onions and a soda! Then I went to the store and bought more protein shakes. Okay so Linda was a little bit right...just a tiny bit....but I am very competitive so I was now determined to prove her wrong, and more importantly be healthy for my kids.

The rest of the afternoon was occupied by homework and waiting at CVS for prescriptions to be filled. I should have an honorary chair with my name embroidered on it at CVS...this is how much time I spend there! The pharmacists pretty much all know me by name now and have been so sweet and supportive, even when I am especially cranky!

Teddy was particularly tired this evening. He had a week full of play dates and was just exhausted. The anxious boy who I had to have on a self-management program for going on play dates last year, now had the busiest social calender in the entire second grade :) We couldn't and can't stop thanking God enough for how strong Teddy has become! We also can't thank God enough for all of the amazing families at Kellogg that are being so tender in nurturing our son and ensuring that he has an incredible group of friends. In so many ways, this tragedy has already made our community a better place. We all seem to be kinder to each other, not that we weren't before, but there seems to be a new found appreciation for what it means to be a good neighbor. Nina is working miracles all around her and she doesn't even really know it!

Although the morning and evening had gone without incident, our evening would not go down as easily. Right after dinner Nina began to complain about her tummy hurting! She started crying at regular intervals. It didn't seem to matter what we did, whether she had the heating pad on her belly or whether Todd massaged her, she was in excruciating pain. To make matters worse, I couldn't help because I was sick and didn't really want to get near her. I looked at Todd frantically. We didn't understand what was wrong. She had been going #2 all week long. Could she still be constipated?? Teddy began to get concerned each time she cried that she needed to go potty. He asked if she was okay. We explained that she was hurting because she was constipated. Each time she wailed, I could see the tears well in his eyes. After an hour of crying, around 8 pm, I suggested that Teddy and I go upstairs and watch a movie. He eagerly agreed and within 15 minutes of crawling into bed next to me was passed out, deep in sleep.

With Teddy asleep, I went downstairs and sat on the living room mattress. I sat and watched Todd tend to Nina in her bedroom. I offered suggestions where I could and just watched. It was awful, mind-blowing to not be able to hold her and be next to her! Todd was doing his very best and trying to encourage her to go potty and push it out. She just cried, softly for a bit then louder and louder until she would request a trip to the potty where she'd then start screaming in pain whenever she felt the urge to push. At this point, the intervals of pain seemed to be about every 30 to 45 minutes. I knew what this meant. Eileen and I had been here before. I made myself some tea and told Todd that I was going to go take a quick nap so I could feel a bit better and then I'd join him around midnight. He kind of looked at me puzzled. It was 9:45 pm. I smiled and told him he was doing a great job but that he should brace was going to be a long night!

Starting at 11pm, the intervals were now every 20 to 15 minutes. Almost like clock work, she started to whimper "I'm serious. I can't push it out. I have to go poo-poo but I'm serious. I can't get it out." Then as the minutes would pass, she'd get louder and more intense with this perseverative speech. The intensity would grow until she'd sit up practically screaming and declaring that she needed to go potty. Todd would then escort her to the potty for about 5 minutes, all full of pain and crying. Eventually she'd give up and ask to go back to bed. The toilet tango was back with avengance!!! I came down at midnight to sit on the living room mattress and offer support and guidance. As I had was going to be a long night! In between potty runs, Todd and I would look at each other with heart ache. We didn't need to say a word to one another. We were breaking for our honey-girl!

Wednesday, September 22, 2010

Day 29

Wednesday September 15, 2010

Today I spent the day in Los Angeles while Todd took Nina to radiation. It had been almost a month since I had met with the Cedars team and Linda in all her wisdom thought it was a good time to have all the different team members convene for a little "Nina Fredeen" pow-wow.

I left Santa Barbara early and drove directly to the Marban's home. When I got there I was able to sneak through the gate, where I found Megan (the Marbans 24 year old daughter who is in medical school) walking toward the house. In retrospect, I was totally creepy but I was caught off guard by Megan's presence. For a minute, just a minute, I silently watched Megan pull out her ginormous book bag and piles of notebooks. Megan is a tiny, stunning girl. As she walked toward the house, from an obvious all-nighter studying at the library, I watched her yawn and pull her gorgeous hair into a ponytail. All of the sudden, I felt a lump grow in my throat. I realized that as I watched Megan, I was also simultaneously imaging what Nina would be like at her age. Would she be in medical school? Would she be helping kids with autism? Would she be an artist? My heart skipped a beat as I also recognized that I may never have the privilege of knowing the answers to these questions and all of the sudden I got very sad. That's when I cleared my voice and greeted Megan, scaring the poor girl half to death! I guess if all else fails, I can become a private detective given how sneaky I can be!

As soon as I walked into the house, Linda have me huge hug. She and Megan took a few minutes to catch up then Megan excused herself. If I haven't said this already, I'm going to say it now....Linda has a freakish sixth sense...unlike anyone else I have ever met. As soon as Megan left the room, she commented to me how she is often saddest for me when she is spending time with her older daughters. We both cried! She knew I had been thinking about the same exact thing. It was good to cry with my friend. Sometimes I try too hard to not cry!

Linda and I had lunch at a beautiful little restaurant near Cedars Sinai. It was so wonderful to be in her company again but it was very surreal to be back in that area. The last time I had been walking the adjacent areas of Cedars with Linda I had been screaming like a madwoman, scaring the beautiful people of Los Angeles! It hadn't even quite been an entire month since my previous visit but it felt like an eternity.

After lunch, we had a bit of time before the meeting with Dr. Danialpour and Dr. Fae Majlessipour so Linda took me to their lab. Now, I knew that the Marbans did heart research and something with stem cells to treat heart attack patients. I also knew that they were both incredibly smart. However, after I visited their lab I was glad I didn't know the extent of their genius and work until now; if I had I think I would have questioned the appropriateness of my requests for their help, which I know is silly, but nonetheless there it is. Linda and Eduardo have taken me in as their sister and have made my family theirs. They are the humblest and kindest of people, and I will never be able to repay them for what they have done for us!

Eduardo and Linda are not just smart-smart, they are Einstein-smart! In essence their research and work is going to revolutionize medicine, no doubt about it. I consider myself to be decently intelligent, but I am not Einstein-smart so pardon my pared-down explanation of the Marbans work :) In a nut shell, they collect a small piece of heart tissue from a patient who has had a heart attack. The patient's very own heart tissue is then put into little petri dishes and over the course of 4-6 weeks millions and millions of new heart stem cells grow. As these new heart stem cells grow they can even start to beat in the actual petri dish (how crazy is that!!!). After this period of time, the patient's stem cells are reintroduced into their own heart and they help the heart heal. Their data is not completely collected but in some of the early cases the patient's heart completely healed and their was no scarring left from the heart was as if they had never had a heart attack in the first place. Up until about a decade ago, no one thought the heart even had stem cells. As Linda told me all about this, my mouth was permanently agape. It was like something out of a science-fiction book (which I love!). I was floored and so proud of my friends! For more information please visit

After the tour of all tours, we all went to Dr. Danialpours office to meet. It was great to see Dr. Danialpour and Dr. Fae. The medical team from Santa Barbara joined us by conference. Originally, I had planned on joining Dr. Brennan at his office to call with Cedars team, but then I decided it was best to come see them in person. There are just to many things (i.e., nonverbal behavior) that get lost when communicating through technology. Human to human interaction in these types of circumstances is still best.

In essence, Dr. Danialpour and Dr. MajlessipourAvastin. They were extremely encouraged with Nina's progress and explained that they had treated over 500 children with these drugs and had not seen the major side-effects that I most feared (e.g., hemorrhaging). I was very happy to hear that they were encouraged. We all knew, and discussed, that only a miracle was going to heal Nina but the fact that she was doing so well, was in itself a small miracle. Doing the chemotherapy would not cure Nina but could further shrink the tumor so that we could have more time. More time meant that potentially we could find something else to save her life.

As we sat and discussed all the reasons to do chemotherapy, and not, I was blown away by the sheer fact that a month earlier I had sat in the very same chair and conceded that more than likely I was taking my daughter home to die within a month. Now, I was sitting in the same chair talking about how we could maybe get 6 great months, or even 9, or even maybe, maybe 12!! Of course I wanted time with our daughter!!! Who wouldn't?? However, again I had to remind myself and everyone else that we were not willing to add more time if it would cost Nina quality of life. We would not be selfish and put her through excruciating pain! That expense was not an option for us! The assurance I needed came when Dr. Danialpour explained that we could discontinue chemo at any point in time; if Nina was in pain and not responding well, the we could stop. When I heard this I released an audible sigh of relief. Dr. Danialpour smiled and said that he hoped that this time I would consider him the "Barer of Good Hope" instead of the "Grim Reaper"....damn he read my blog!!! I laughed and reminded him that I had also greatly complimented him. We all hugged goodbye and I left with a different kind of heaviness this time. Bottom line, my daughter was strong....but how much of that strength were we willing to test???

The rest of my evening in Los Angeles was peaceful. It was a delight to see the Marbans and friends. As I climbed into my car to drive back to Santa Barbara I felt a deep warmth grow within me. Part of that growth was the encouragement I had received that day from our entire medical team....the other part was a fever!! I was sick!!

Tuesday, September 21, 2010

Day 28

Waiting for the anesthesiologist with the Pebbles hairdo!

Tuesday September 14, 2010

Our honey-girl is so brave!! Her brother is completely right. She has adapted so well to this nightmare. For the second day in a row she didn't cry in the morning when we arrived at the Cancer Center. In fact, she actually asked to go to the doctor's appointment first thing this morning. Of course, she's doing this all on the calculation that the quicker she gets the doctor's appointment over with the quicker she'll have access to food. I think the girl should get an honorary Ph.D.!

It never ceases to amaze me how resilient we humans can be. Less than a month ago I was consumed by the same routine I'd had for almost 8 years. Then, disaster struck and we have now become a family about medication schedules, radiation treatments, clinical trial considerations, unpronounceable medical terminology, insurance calls, and most important of all, gratitude. On August 20th this seemed unmanageable. Today, it is our life.

The changes in our day to day life have also made me think a lot about the families I have had the privilege of working with. I have always considered myself an empathetic person, but Nina's illness has completely changed me professionally speaking as well. The reason I went into the field I went into was because I genuinely love helping others. For almost 15 years I have had the pleasure of helping individuals with autism and their families. These families long ago taught me what resilience, gratitude, perseverance, and hope was in the big sense of things. Little did I know they were also preparing me for how to apply it with my own child. There have been countless of times during this month long journey where I have been in a situation that  reminded me of a specific family and how we had collaboratively worked through an obstacle or responded to a judgemental stare or used a specific motivational trick (e.g., Hannah Montana phrases, silly songs) to pull their child out of a slump. Now I use all of these with Nina.

The behavioral interventions I have used professionally have been my parenting style all along but I had never relied on so many specific things I did with families until now. I am humbled! Here I was thinking I was teaching them something, but God in His infinite wisdom was shaping me, building my strength and heart through these families! You know who you are...THANK YOU!!!

After radiation, Nina proclaimed she wanted to return to Panda Express but this time she wanted to eat at the restaurant. I was down for Panda! So off we went. Nina ate her usual  kid's meal of orange chicken and half noodles and half white rice. I got a side of broccoli beef because she loves the broccoli in it! If I had allowed her to, she would have eaten the entire kid's meal plus the side of broccoli beef. But I didn't. The hospice nurses had explained that we needed to closely monitor her food intake so that she wouldn't put on more weight and subsequent complications from side-effects. I had already noticed a difference in her breathing at night; it was more labored.  The last thing I wanted to do was create more complications! Nina's body was already stressed to the max. I did not want to press my luck with anything else. All we wanted to was to keep Nina as happy as possible for as long as possible, all the while reaching for our miracle from heaven.

After lunch at Panda today, Nina decided it was time to go home. No shopping today. She wanted to go home and watch Scooby Doo!

Since Nina's birth, I have come to admire many things about my daughter. Perhaps the trait I most admire is her ability to know exactly what she wants and to not have any fear about letting it be known. I do not operate that way at all!! Perhaps that is why I so admire it in Nina! It's not like this is a personality trait of Todd's either. This is all Nina Fredeen, uniquely her! Don't get me wrong, I know exactly what I want (95% of the time) but I normally am bound by fear of disappointing others, that it's not the best thing to do according to convention, or fear of failing that I don't even try. Watching Nina deal with her own illness is teaching me so much about how I should live! She does not hesitate to seize the day.

I want to be like Nina!!! I think we should all be like Nina!!! 
We should all do the following to be like Nina: 

1.) Love God with all our hearts!

2.) Love our family and friends with all our hearts! 

3.) Laugh whenever possible and as much as possible! 

4.) Have happy, helpful hearts in whatever we are doing!
5.) Seize the day!

I have a Ph.D., worked with some of the world's most brilliant minds, traveled across the globe, read scholarly material...yet it is my 5 year old daughter who is teaching me how to live better with each beat of her precious heart, with each melody of her contagious laugh and smile, with each perfect kiss from her gorgeous lips, and with each hilarious, angry, insightful, touching and brilliant word out of her tiny mouth. Nina Dolores Fredeen is already our miracle and we praise God for every moment we have with her!!!!!

Happy treatment, happy breakfast, happy belly!