On Thursday August 19, 2010 we found out that our precious little girl has an inoperable brain tumor in her brain stem. The overwhelming amount of love we have received from our families and friends is a testament to God's grace and provision in the darkest of hours. To help keep all our loved ones informed, as well as, process everything we are experiencing, we decided to create this blog. We adore our sweet Nina and we need a miracle!!!
Mixed emotions. My life is marked by mixed emotions: happy-sad, secure-anxious, strong-wounded, delighted-lonely, calm-frustrated, elated-heartbroken! Sometimes the range is covered at lightening speed, leaving me dizzy. Today was one of those days.
Elated was shopping with Adelae and Nina, seeing them try on items to find the "perfect" pair of glasses and outfit, hearing them laugh like the very "bestest" of friends!
Happiness was exploring the zoo with the kids and seeing their curiosity and sense of exploration explode with each turn.
Delight was unexpectedly running into Hanna and Doug Dreier. I had never met Hanna. As we entered the zoo she recognized me from the blog and introduced herself and her gorgeous family. The Dreiers had made Nina's Zoo Party a reality! They literally paid the site fee and made sure that Nina's complete happiness was secured at every turn! The kindness of strangers leaves me breathless!! Needless to say, the Dreiers are no longer strangers but cherished friends!!!
Anxiety was revisited by Nina's returning symptoms. Since our return to Santa Barbara, Nina's symptoms had been reemerging. Symptoms started rearing their ugly head starting on Christmas night, with a tiny bit of drooling right at bedtime. However, since returning to Santa Barbara, I had begun to notice a profound change. First, her sleep was further disturbed. Then, the drooling intensified. Finally, the ataxia (difficulty walking, keeping balance) returned with avengence!
On our way to the zoo, I called our oncology office to speak with one of the doctors and update them on the symptoms and to confirm our MRI and Avastin treatment for Monday. Unfortunately, the MRI somehow didn't get scheduled and the next one available was January 17th. This was not going to do. I needed to know why the symptoms were reemerging. I needed to know what was going on in her brain stem. I needed to know what was happening with the tumor!! Was it growing? Was there increased edema? Sooo... I immediately called my guardian angels...Linda and Eduardo Marban. For the next several hours, I texted with several doctors and the Marbans, trying to make an appointment at Cedars for an immediate MRI. Linda and Eduardo are my fairy godparents! They are my guardian angels! Within hours....everything was rolling in the right direction. I breathed a sigh of relief.
At 4:30pm, Adelae said goodbye to Nina and Teddy. Nina was so brave as she hugged Addie goodbye, but I could tell she was heartbroken. Adelae hugged her tightly, as if trying to memorize the way Nina felt. I know I do that all the time. After one more set of hugs, Adelae and I climbed into our car and drove off to meet Joe half way! Adelae had to return home to spend New Year's Eve with her friends. Each visit with Adelae is a precious gift! We are forever thankful!!
The drive back after dropping off Adelae was long! There was a ton of traffic. Initially, I questioned why there were so many cars on the road but then I remembered it was almost New Year's Eve. The night seemed to engulf me, pounding me with a dark loom. August 19th seemed like a lifetime ago but then again it seemed just like yesterday. I had prayed so earnestly for the holidays with Nina and my prayer had been heard. Now....the year was coming to an end. What a cruel year! A myriad of thoughts raced through my mind. I tried to shut most of those thoughts out of my mind but they careened back in as fast as I threw them out! Before I knew it, holy terror had seized me! All I wanted was comfort!!
Today was filled with wonderful adventures with the cousins! Happiness flew through our condo like a swarm of bees :) Laughter filled each nook and cranny and imaginary play flowed like Niagara Falls. Teddy will have a lifetime of beautiful memories from all the special moments he has had with his cousins. I pray...Oh Heaven above how I pray....that Nina will also have a lifetime of memories!
Nina has now been steroid free for 10 days and we see such a difference in her personality. She is "more" Nina...meaning that she is sassier, quicker to engage in banter, more willing to engage in pretend play, and super funny! Nina has always had a great sense of humor. We had lost that but now we've gotten it back. Yet another miracle! When Todd came downstairs, the kids had been up for a number of hours and Nina had moved onto her second breakfast. She paused her eating long enough to greet her father with the following:
"Dada and I are twins....we both have big face, fat legs, and big bellies!" She erupted into laughter and Todd immediately tackled her down, tickling her with all his might.
Once Nina was done insulting her father :) we all climbed into Todd's car and drove to Ellwood Preserve where we spent the next several hours hiking and having lots of fun adventures. The kids ran through mud drenched forest and trails (from all the unusual rain), screaming, hooting and hollering. Nina was in an excellent mood and even got out of the stroller to follow her brother and cousins on several instances. She especially loved crawling through a deep set of bushes in order to see the the water-filled creek. Teddy had shouted to us as we approached this particular bend in the trail that he had found a waterfall. Silas and Adelae ran as fast as they could to see the natural wonder. God bless them because they were delighted to see the 4 foot waterfall :)
Watching hawks battle a gang of crows!
Marveling at a sweet lady bug....sweetly named Dot by Adelae :)
It never ceases to amaze me how dirty boys can get! I don't know how they did it but Teddy and Silas were covered in mud and dirt. Somehow Adelae had managed to keep herself clean, with the exception of a few mud stains on her sweatshirt. The boys...well....they were filthy! So...when we returned back home, they were commanded to shower :) Lucky for me they didn't refute my claim that they were dirty little rascals!
So many shells!
After cleaning up, we went to the Pier and explored the different shops. I love watching the kids learn. It makes me feel like a child again, filled with eagerness and curiosity. It is a beautiful thing!
Dinner was spent at Zodo's Bowling and Beyond. There is nothing like a great time at the arcade to build the appetite. Unfortunately, the boys and Nina didn't want to bowl. I knew Addie wanted to and so I offered to bowl with her. To my dismay, she declined!!! Apparently, I am NOT cool enough to bowl with. Puh!!!
As Adelae so aptly pointed out....Tallest to Shortest :)
Although I'm not cool enough to bowl with, I am cool enough to go on another night hike with. As such, we dropped off Todd and Nina and then went to Starbucks for hot chocolate. With our warm drinks on hand, we went to UCSB to hike around Campus Pointe. Problem was....no one remembered to bring a flash light. Quickly we realized that hiking with out light was out of the question so we made our way back to the car. On our trek back, the kids took turns trying to scare each other by pointing out goblins and monsters lurking behind rocks and buildings. Inherently, I am a sadistic person and this trait knows very few limits. So....as we made our way back to the car, I hatched a devious plan :)
By the we reached the car, I had my plan ready for action. As I unlocked my car door, I screamed at the top of my lungs "GET IN THE CAR!!!" several times. In a flash, Adeale jumped into the front seat and crouched onto the floor as she simultaneously slammed shut the car door. Silas roared, "LOCK THE DOORS!! LOCK THE DOORS!!! STEP ON IT!!" Teddy simply sat, buckling up and laughing hysterically! I joined Teddy in laughing so hard I almost tinkled!! Within a few seconds Silas and Adelae recognized my prank and let out exasperated screams and swore there would be pay back. Once we were all settled and buckled, we called my inlaws so the kids could tell them about my torturous trick. I roared with laughter all over again as Silas told his grandmother, "Each time I screamed, I scared myself more!" How I love these kids!! They are such treasures!!
Needless to say, after running around all day and getting the living daylights scared out of them...all the kids slept beautifully!!
Today we returned to Santa Barbara. Adelae flew with Nina and I, while Todd took Teddy and Silas (as well the cat and dog!) in the car. Silas found it particularly amusing that Max (the cat) roamed around the car, laying in each lap for segments of time :) Periodically (okay daily) I wish I were that cat, just so I could spend half of my day comatose and the other half demanding either food or attention!
Bob, the pilot who flew us back home to Santa Barbara was a darling man, whose own daughter had a brain tumor in her adolescence. They got their miracle. I am continuously praying that we get ours.
Watching the girls fly was a total hoot. Nina has become such a pro...a consummate air traveler! Adelae has only flown once before so crawling into the tiny plane was a bit intimidating! The best part was watching their darling faces illuminate with delight as we passed clouds! Their innocent curiosity ("What's that Rosy?", "Mama...look it's snow.") was delicious, absolutely delicious! Half way through the flight, Nina busted out with "May-day, May-day". We all cracked up, especially Bob. I asked Nina where she had learned that and she replied, "I dunno." Addie just burst into laughter!
Although Nina had an amazing time in Turlock, she was ecstatic to be home. To make the homecoming even sweeter, we found Eileen's Christmas FedEx box at the front door! While we waited for the guys to arrive, we played Wii, painted, and Adelae read one of the books she needed to do a book report on. She is such a brilliant girl! Periodically, she asked me a question about what she was reading that would turn into an amazing 5 minute conversation you'd expect to have with a college student! I pray that she never loses that drive to learn!
By the time the guys arrived, it was dinner time. Teddy was so excited to show Silas his remolded bedroom. Every kid that sees that room is left salivating! We are so thankful to the Serenas for making Teddy feel so special! He treasures his room beyond measure...actually there is measure...he picks up his toys and clothes :) That never happened before!
While in Turlock, the kids had wanted to see the new Chronicles of Narnia movie. Since we hadn't had time to watch it there, we decided to watch it after dinner. Nina decided that she was too tired for a late movie so she stayed home to play Wii with Todd.
The movie and popcorn were great! After the movie, I took the kids for a midnight walk at Goleta Beach. Teddy and I do this frequently. Adelae and Silas thought it was the coolest thing ever. I was stoked because I'm definitely NOT the cool aunt, so whenever I'm given that title I relish it :) For about 30 minutes they raced up and down the beach chasing each other and screaming at the top of their lungs. Periodically they'd try to freak each other out by pointing out a shadow. At these moments, I'd take off running which would result in Silas screaming in pretend terror "You better stop or I'm gonna wrestle you to the ground when I catch you!" Try as I might, he always caught me within 30 seconds :) It was so much fun to laugh and laugh and laugh. Teddy simply glowed! He needs these moments of sheer delight and happiness!
Snow day!!! The kids were ecstatic to go to the snow! Unlike people who actually have to live with snow, we Californians get ridiculously excited about playing in the snow. Perhaps that is because after a few short hours (or days if a longer trip) we get to leave it and return home to our mild winters.
Sometime around 11am, everyone jumped into the cars and we drove about 1.5 hours to Long Barn. Long Barn is near Columbia, Jamestown, and Strawberry in the California Foothills. It was gorgeous. Snow covered the ground, just the perfect amount for the kids to be able to run in without getting trapped in deep mounds. To say Nina was on cloud nine does not begin to describe the excitement and delight she experienced. She was beyond happy! She had been asking to go to the snow forever. Of course we had played with the snow at the Zoo but that didn't really count in her book :) She wanted to see trees and roads all sprinkled with powdery coldness. Well...Miss Nina got her wish.
We spent the next 4 hours playing in the snow, throwing snow balls, ice skating, and riding sleds. Nina played in the snow for about 20 minutes and even built a miniature snowman with Sosie and Sierra. She had so much fun!! All the while, the boys ran around like nuts, chucking mounds of snow that were suppose to be snowballs.
After the initial trek in the surrounding snow, we went inside to the ice skating rink. Nina was eager to go ice skating, however, she was not happy about putting on the ice skating shoes. "They're too tight!" she yelled. Finally, after the second pair we found the right size. I volunteered Todd (haha!) to take Nina out onto the rink while I took photos. Well...before I could even snap my first photo, Nina let out the world's loudest yelp! It echoed throughout the entire rink and made the nearby adults crack up! It was beyond a yelp....it was the mother of all shrieks!!!
Apparently, the ice was too slippery for her! She was furious as she screamed, "They made it too slippery!" I have to give Todd kudos for trying. He took her out 4 times within a span of about 10 minutes. Each time, she'd scream and holler in total panic. The girls (Sosie and Adelae) tried to help to no avail! She was so dang cute we all just laughed, making sure she didn't see us laugh, for fear that she might yell, "Off with their heads!"
After ice skating, Nina and I huddled in the car. She was done with the snow and proceeded to play on the iPad with me. She was covered by so many blankets she looked like a marshmallow. The kids, along with Joe, Todd and Joe's girlfriend had a massive snow ball fight. About 30 minutes into the battle Teddy came in screaming that his feet hurt from the cold. The poor boy had cold feet. I had him change clothes and rubbed his feet, all the while trying to get him to calm down. Teddy goes from 0 to 100 in a split second. He yelled at me for making him change his clothes and blamed me for losing his temper :) Eventually he calmed down and we repaired the situation. I explained that it is never okay to mistreat others, even if we are cranky or in pain. This is such a hard thing for kids to learn. In all honesty, how many of us adults actually ever manage to master these behaviors?
Oh ya, I drained the battery of our car by running the heat...ooops!!
All in all, this was a gorgeous, fun-filled day!! While the rest of the gang sled, Nina napped! We returned to my folks for dinner (amazing Mexican food from my favorite restaurant in Turlock....La Morenita!). Bruno, Michelle, and Todd's folks also joined us for dinner. We were all together, one last time before we left in the morning for Santa Barbara. It was a wonderfully, wintry-white snow day!! We couldn't have asked to end our Christmas holiday in a better way, especially topping it all off with dinner together.
During bedtime, Teddy crawled over to me and wrapped his arms around my neck. As he did, he said, "Mama, I 'm so sorry for all of the disappointments of the day! I shouldn't have yelled at you. I am so sorry!" Todd chimed in for Teddy to quit apologizing already, that he had done so earlier. Teddy laughed but continued his sweet contrition. I gave Todd the stink eye and thanked Teddy for apologizing again, although I explained it wasn't necessary, that all had been repaired and forgiven earlier. Nonetheless, I did follow his lead and talked about how we really need to carefully treat relationships, even the closest kind (e.g., family) but that the beauty of family and close relationships is that we can repair and forgive. He ended our day with sheer perfection...a tender kiss and cuddle-time!!! I don't even remember falling asleep!
Coming back home for Christmas has been such a blessing! It has allowed us to spend time with our families.
Time. I have spent my entire life being in a hurry. This used to drive my mom nuts. As a kid I was always in a hurry and that trait definately maintained throughout my adulthood until August 19th.
Now....all I want to do is slow down time! If only I could stop it!
Today we had family visit. My aunts (mother's sisters) from the Bay Area came into town. It was great seeing them interact with Nina and Teddy. Most of all, I loved seeing the joy in my mother's eyes!
After visiting with my aunts, we went to Todd's folks and visited with some of his cousins. I was glad that so many of our relatives had come to visit. Nina was comfortable being at my parent's or at Todd's parents. Taking her to large gatherings was too overwhelming for her but being on her own turf allowed everyone to spend time together.
I was especially happy that we had been able to fade her from the steriods. Since doing so her mood and responsivity have greatly improved. Bottom line, she feels better and it shows. She is willing to interact more. The best part today was seeing her keep up with her cousins. It didn't matter if they were doing an art project, running outside, chasing each other in a wild game of tag, or having a race on their new flying tutrles, Nina was motivated to keep up. It was precious!
Once all the visitors left, the kids got ready to go see the new Yogi Bear movie. Honestly, I didn't have high expectations...but it was awful! The kids loved it so that's all that mattered! By the time we returned home it was snack time and then off to bed. We were going to the snow so everyone needed to rest up! All Nina could talk about was making snow balls so bed time was quite a challenge :) Lucky for her, Teague (who was her sleep-over buddy) is just as big a talker. I lay next to them, listening to their endless chatter. Listening to kid's conversations is absolutely hysterical. Listening to Teague and Nina, I realized that I need to add way more sound effects to my conversations. Doing so should keep people more interested in what I have to say :)
By the time folks and I returned from midnight Mass, it was close to 1:30am. I still had to wrap the kid's gifts from Santa :) As I searched around for a pair of scissors and tape, I got a wonderful text message from my friend Santiago. In it, he reminded me that "this moment" is all that we really seem to have and that the fact remains that each moment is a beautiful thing. He went on to add that he believes that somehow, everything that happens is part of a perfect plan much too complex for us to understand.
Santiago's words spoke volumes to me. Life really is just a series of "moments". We just need to decide what to do with those moments. As for everything being part of a perfect plan, I can relate to Santiago's heart. I do not believe that God is a puppeteer, pulling our strings one direction or another. I do not believe that God gave Nina her illness to teach me or anyone else a lesson. Nina's disease is simply that, a disease, a horrible part of life. Although I do not believe that God is playing one giant chess game with our lives, I do believe that He provides us opportunities throughout our lives to fill a purpose. It then boils down to what we decide to do with these opportunities. What is hard for us (i.e., humans) is that for the most part, the "purpose" is not always clear. In my life, I will probably never know the purpose, at least not while I am here on this earth, but that is okay. Somehow, I'm learning that is okay.
I finished my wrap job and loaded the Christmas tree with gifts. The living room looked spectacular. The kids were going to be elated in the morning, which by this point was only a few hours away. I crawled into bed, right between the two most precious gifts I had ever been given. To my right was honey-girl and to my left was my peanut! It was a perfect Christmas morning!
The gift to my right!
The gift to my left!
Everyone slept in, even Vovo and Vava. I woke up around 9am to the smell of bacon. Yum! For a little Portuguese girl, there is no better smell in the world :) Although the bacon and coffee were calling my name, I decided not to move. I just lay next to my two most precious and perfect gifts. I snuggled with each of them, savoring the sweet smell of sleep that quietly escaped with each breath they inhaled and exhaled. Around 10am, Teddy woke up. We cuddled for a long time! He is such a cuddle-bug. I could cuddle with him all day and the thing is, he could too! One of my main prayers for Teddy is that he will choose to marry someone who is a cuddler. It would such a waste of perfect cuddling if he married a woman who didn't appreciate how special and rare he is and took advantage of all his cuddling :)
After 20 minutes of cuddling, Teddy succumbed to the wafting invitations that were flowing through the house, so we snuck out to greet Vovo and Vava. Within minutes, Uncle Bruno and Auntie Michelle (along with the "belly bump" as Uncle Bruno so affectionately refers to his unborn son!) arrived. It was now officially Christmas. We all hugged and then Teddy snuck from in-between the adults and zoomed to see the display of gifts. He was stoked!! He crawled around, inspecting which gifts belonged to him and which belonged to everyone else :) My dad brought me a delicious warm cup of coffee. Everything felt great!
Wow! Are these for me?
So eager to start opening!
Matching beanies!
Around 11am, Miss Nina graced us with her presence. She was beyond elated to see all of the gifts and immediately wanted to open them. However, first things first.....bacon! We had a delicious brunch prepared by my loving parents. Of course, the kids scarfed down their meal and then patiently waited as the adults gabbed away. Eventually Teddy asked, "Are you guys going to be done sometime soon?" Bruno burst into laughter! That was our cue for returning to the couch and to prepare for the gift-opening extravaganza.
Nina hugging her baby cousin!
Teddy asking what a Nipple Shield is. You shouldn't have asked son!
Teddy hiding and freaking out after he found out what a nipple shield is.
I warned you! You shouldn't have asked!
Because of Nina's illness we are all hyper aware of the precious nature of Christmas, the ultimate gift that we each have the opportunity to receive. Because of Nina's illness we are also hyper grateful for time. Christmas morning with my family was Heaven-sent time! We were all so happy! The kids loved their gifts and loved giving every one else the gifts they had picked out. My parents, Bruno and Michelle all got a huge kick out of the pillow pets Nina had picked out for everyone. Teddy and Nina were especially proud of the gifts they had chosen for their dad. Nina had picked a doggie pillow pet for Todd and Teddy had spent a ton of time meticulously choosing the "perfect" mini-pocket knife. As Todd opened the gift he had chosen, Teddy sat quietly with the greatest grin spreading across his sweet face ;) He knew he had done a great job and he was so proud!
I picked it out Dad!
Dad loves his pillow pet!
Nina is a great gift giver!
advil for pain relief.
The stink was on!
Unfortunately, I didn't plan things out well! Aghhhh!!!! I try so hard to think of what needs to be done, how things can be delivered in the best possible way, and then I miss that absolute obvious or the most important. What I should have done was have the kids exchange gifts first. This would have caught them both at their very best. At the very beginning Nina was super happy. By the time Teddy reminded me he wanted to give Nina her gift, she was already in full stink mode! Again, I should have primed her to do the right thing, to say thank you and be cheerful toward her brother, but I messed up once again.
In all fairness, we started off well. Nina gave Teddy her gift and was delighted by his enthusiasm. She had picked a basketball for him to practice with. She was very proud of herself. Teddy genuinely loved it and made a huge deal about how special it was. His entire exchange with her was breathtaking. He was so kind-hearted and thankful, gave her a hug, and told her he loved her!
Then it came time for Nina to open Teddy's gift. In actuality, I really don't think she understood it was a jewelry box. She unwrapped it the scowled, "I don't like it!" We visibly saw Teddy's heart sink and it broke mine into smithereens. I jumped right next to her and showed her how it opened up and played music and how much time Teddy had lovingly spent picking it out. I then explained that she needed to be thankful and she did mutter a soft "Thank you Teddy." Unfortunately, the damage had already been done.
For another 15 minutes or so we continued to open presents. Eventually the commotion and excitement died now. I watched Teddy sneak out of the living room and make his way into the den. I waited to see if he'd return. When he didn't I went to check on him. I found him seated in my father's old Lazy Boy recliner. His eyes were dewy, from tears he was fighting back :( We proceeded to talk about what he was feeling and he explained that his heart was hurt because Nina hadn't liked his gift. I did my best to explain that it wasn't personal because she had complained about others too and that it was about her being tired and cranky. He pulled out an 8-year-old retort and quipped that he had never acted that way when he was her age. It was hard not to laugh at his preciousness! I reminded him that all kids do hurtful things and that just last week he hadn't been too stoked about a gift and hadn't demonstrated strong enthusiasm for it. Bingo!!! Teddy has yet to learn that I don't forget much. When I said this, he looked at me sideways, trying not to grin. I made sure to validate his feelings and add that she had behaved badly, regardless of having a headache or being tired. Finally, I explained that appropriate behavior is something we all work on, especially when we are 5!
Eventually, he came around. Luckily, his mood had vastly improved when she walked in and spontaneously apologized for not being nice. She also thanked him for the present. He accepted her apology although I could tell he was still hurt. I couldn't blame him!
The rest of the early afternoon was spent lounging. Shortly after our conversation in the den, Teddy and I found ourselves cuddled on my parents bed. He is such a snuggler. I kissed him and told him that he was the most incredible boy I knew and that he deserved every gift he got. He shook his sweet head no and said that I was the most incredible of them all and that I deserved credit for all of his progress! His PROGRESS!!! I died!!! What 8 year old kid talks like this?? I laughed so hard!! Then I grabbed my camera and took the following ridiculous video! I love this video because it captures Teddy's pure sweetness and rascally boy behavior! What a love!!
It was so nice to just relax! The kids played with their new gifts, the grown ups napped, and my parents and I caught up on some long over-due heart-to-heart conversations. Around 4pmish, Todd left for his Aunt's house. The kids and I continued to spend time at my folks. On the way to this trip, I had decided that friends and family could come visit us at my parents home or at the Fredeens but that taking Nina to large gatherings was out of the question.
That night we had several visitors. First my cousin Christina and her two darling kids, Loralie and Logan, came for visit. Being surrounded by peers immediately elevates Nina's spirit! Truly amazing! Then after my cousin's arrived, Kyle, Kameron and Ellie came for a visit too. It was wonderful to have our loved ones visit with us and our kids. Again, we had another miracle!
