Getting Anxious- Our tickets are booked

Our tickets to St. Jude are booked. Kayla's Nana (my mom) is joining us since Denny can't come because he will be having his CNA test the same week. I just don't want to go alone the first time. Plus, it really is an incredible place to visit.  I think that bringing mom with me will help her to truly understand where we have been and what we have seen. It's one thing to tell people, and another to be there and experience this place first hand. Luckily, mom is splurging on a rental car so we can truly have a bit of fun. Kayla has already asked if we can go to the zoo and to the children's museum. I'm not sure how much time will be left after all of the appointments that we have booked. We shall see!

I really can't believe it's almost time. Just as school is getting more and more under way... just as our house is finally starting to feel like our house again.  So far, things at school have been going really well.  Kayla has in incredible teacher and has a lot of good friends in class with her as well.  We couldn't have asked for a more gracious staff to look over her right now. They have truly been amazing to us.   Both of the kids are doing fantastic so far this year. Kayla has been handling her full days in school great!  I am the one who is exhausted for some reason.

Last week, out of the blue, Kayla got "sick".  It was random. It hadn't happened since we first got home in July.  At first we brushed it off because she said that she just ate too big of a bite. School started on Wednesday and on Friday morning I got a call that Kayla had thrown up outside of her class room. Again? My brain immediately went there. "Oh no. How could this be? Please let this be a fluke!"   When I got to school, Kayla greeted me with a smile and asked if she could still go to the ice cream social that night. I was a little relieved. She didn't have a fever. I asked her what she thought caused her to get sick. She told me she choked on her scandi-shake (her high calorie shake that I make her when her weight dips).  Ok. Deep breath momma.... So I asked her if she wanted to go home with me or if she wanted to go back to class. Of course, she picked her class! That was it. Fluke. I was so happy. A little concerned as to how her classmates must have felt witnessing that after everything they know about her. I thought for sure they must be traumatized, but I was reassured that they were very helpful and concerned. The weekend was good! We had a very small impromptu birthday party for Anthony who turned 5 yesterday.  It was windy, but fun! I only regretted that I doubted myself. I thought the party would be kind of boring so I was embarrassed to invite more friends. I learned my lesson. I can rally at the last minute.

The night was winding down and I was left excited to celebrate the upcoming birthday. But for some reason, I had this feeling in the back of my head like there was a storm brewing... and then Kayla got a head ache. My heart started to race. My stomach was in knots as she cringed and pointed to a spot above her left eye. Maybe it was all the noise and excitement of the day? Who knows. I just sat there and prayed that it was another fluke. We have been warned. Warned many many times that every head ache and every vomiting episode would make our stomachs turn and make us fear the worst. Relapse.  I went to bed telling myself there is no way. Not now. Not when she has been thriving.  I pulled myself together and reminded myself that this could totally be a fluke and that tomorrow is a new day. Ok, I made that sound really easy. I promise, it wasn't.

When morning rolled around, Anthony woke us all up sobbing because he didn't want to wear jeans. I mean, can you imagine??? Then, in the kitchen, I forgot that I had already shaken the juice container and taken the top off when I decided to pick the container back up and shake it again. Yep, I was drenched. I think all the crying and me yelling over spilled juice totally negated the fact that I tried to make an awesome french toast breakfast for the kids.  Here we were left with about 15 minutes until we needed to rush out the door to get to school.  As I was cleaning the sticky mess off the floor while stripping down, I caught a glimpse of Kayla running to the bathroom to throw up. Now my morning was officially ruined. My stomach was immediately in knots and my eyes welled up... I was officially worried.  Once everyone got cleaned up, we headed out to the car. I kept trying so hard to smile and continue to sing Birthday praises to Anthony who so deserved some normalcy.  Everyone could tell that I was worried. I am not much of a faker.  On the way to school, I asked Kayla if she felt like the nausea was getting worse? She said, "yes". Ok, now I was really worried. Tears poured down my cheeks. I walked the kids to their classrooms and broke down to a few friends who had a moment to spare an ear. I felt terrified and desperate. I had to contact her doctors and see if this was something that they also felt might be concerning.

I sent an email and quickly got a response.  Thank goodness for our speedy team. I think they knew that I was anxious.  Kayla's Doctors believe that it is just too soon for her to be weaned off of her zofran this much. So, we were instructed to try upping it and see if that does the trick. The thing is that this treatment can still cause havoc on her stomach for up to a year after treatment ends. Of course, we are all thrown off by the fact that Kayla looks so incredible. Her smile is bright. Her color is great. And that hair!!! Oh how she looks to be thriving. So, sometimes I forget that we still need to take things really slow. I get caught up in trying to regain normal ground as quickly as possible. I guess we all want to make up for lost time, but it's not that easy.  I am happy to report that the new increased Zofran does seem to be doing the trick.

Soon we will be back on a plane headed to Memphis to play the waiting game. This anxiety leading up to "all clear for now" is torture. Again, we are reminded to just live each and every moment to it's fullest. For now, we can breathe.

 Early mornings before school. LOVE.

 Friends who offer to make Anthony last minute Birthday Cupcakes. LOVE.

 Pinterest. Love.

 Meow-meow face paint. Love.

 Turning 5 with a few friends who could make it last minute. Huge love!

Sunday morning giggles. LOVE!

Back To School Day - August 22, 2012

Well, it's official. I have a Kindergartener and a 3rd grader! I thought this day would never come. Last night I laid in bed all night thinking about how far we have come to get to this day. I remember dreaming of this and feeling like it was years away or never going to come... and here it is! Finally.

Our "traditional" 1st day photo spot. This time we have a new addition :) 

We got lots of hugs from friends we have missed so much! What a wonderful feeling it is to see everyone again.

 Kayla's Desk!  Where she will happily occupy through the entire year!

And here is Anthony and his adorable Kindergarten class! It was a very busy morning. All happy. All smiles. Just a true blessing!

NEGU

While visiting Trader Joe's today, we couldn't help but stop for this photo op. I keep thinking I need to get one of these in GOLD. (In case you don't know, gold is for pediatric cancer) 

Lately, Kayla has been full of energy! It's been so great to watch her running more and laughing harder. I am in heaven watching her body grow stronger and seeing her push herself more. Little bits at a time, but she is getting there. As we inch closer and closer to the start of school, so does her backpack.  She is so excited to see her friends again. 

Denny's been busy with his CNA course this week. It's been so strange to not have him home after all of these months of togetherness. He comes home and practices on us all. It's fun to see him so excited and passionate. His first test was today. It was no surprise to me that he aced it. Of course he did!

It's looking more and more like I will be the one to take Kayla to her scans in October. As it turns out, the big exam for Denny just happens to fall the week that we are scheduled to go back. It will be very strange to be there at St. Jude without him. Kayla keeps making fun of me reminding me that we start at 6:45am for the MRI which is 4:45am California time. I will admit it. Kayla knows I'm not a morning person. It's no biggie. Nothing I can't handle. ;)

The sunset from our back yard was magical tonight. I couldn't help but watch it and think of all of our tiny friends... those we have lost recently and those who are still waging the war. Fight on. To anyone battling anything without a cure, fight on. Keep raising awareness. We have been given a voice. Use it!  Always, NEGU (never.ever.give.up)!!!

Waiting For The Bell To Ring

Once again, I have found my days full of things that have kept me away from updating and for that I am so so sorry. Not only because I know how many faithful readers and followers there are and have been during this battle to health for Kayla, but because it really truly is my diary. 

Let me begin by just saying how wonderful Kayla is doing. We are so very proud of her for her unwavering determination to live like a "normal" 8 year old girl.  When she is not eating, she is thinking about her next meal. Kayla's weight still continues to bounce between 35 and 36 lbs. I do believe she is growing right now though. Her legs are aching a lot. Of course that can also be a side effect from treatment, so it's really hard to know. Everything can be a side effect. 

Right now, we are just past the point here at home where we were in March when we were about to return to St. Jude for Kayla's continued treatment. There were so many unknowns then. I remember all to well the feeling of sadness and fear as we were about to go down a horrible and very unknown path.  Watching Kayla in her last few days home starting to thrive again only to have to face it all over again was so hard.  So, this past week has been glorious. As her hair begins to grow to the longest length it has been since January 1st, I rejoice.  The brows are dark and full. Eyelashes almost half of what length they used to be, but gloriously just as dark and thick. We have been out and about a lot lately. Sometimes we notice the looks. Often followed by smiles.  I just want to say, it's "ok" to say hello! We want to know and thank all of you in person. You all have become like family to us. We couldn't have made it this far without all of you. Kayla is very proud of how far she has come and enjoys very much meeting people who have grown to love her too.  We realize it's an honor to have the support we have. Boy do we love you all!!!!

Last week we took advantage of the beautiful weather and headed out for a few fun hours at the beach with our friends, the Brechts. We flew kites, played and of course, ate.  Such a beautiful day that we will always cherish.

Last Sunday, Donna drove up from LA with just her girls for a few fun days. We had so much fun hanging out, hiking, and playing at Pioneer park (which was where Donna and I often played as kids together).  What a much needed time together here. It was good to hear laughter here instead of what was going on the last time when Donna was at our house. We are so eternally grateful to her for being with us during brain surgery, recovery, and to ultimately help us get into St. Jude. What a gift her friendship has been over the past 30 years.  Donna, my friend... I love you!

Anthony, Katelyn, Kayla, & Lindsey (each 9 months apart) - Basically, cousins.

 Buds!

These girls define "strong" in every way. Heroes really do come in every size and shape. Katie, who has been known to melt your heart. You would never know her struggles because she just trudges on like the true warrior she is. You would never know that she has Congenital Scoliosis and Hemifacial Microsomnia Syndrome. Katelyn was only 18 months old when she underwent a lifesaving surgery that had never been done before. Her story continues as well and each day is a miracle.

 This is the spine of a fighter.  She is a teacher. A daughter. A sister. A friend.

 

Kayla and Lindsey freeeeezing in the morning. Gotta love our Bay Area fog :)

We have had many special moments at home full of love and gratitude.

In some ways nothing has changed. In other ways, everything has.  Happily we re-prioritize our life and keep in front what makes us thrive as a family. Normally, when something big happens in your life, you are filled with this huge sense of gratefulness. For a while, we are reminded to hug harder or love stronger. I was so afraid that being home and with every day away from cancer, this feeling would start to fade.  I know it really hasn't been that long, but still! Surprisingly it hasn't.  If anything, the feelings of gratitude for everything in our lives seems to keep growing bigger and bigger. Now that is a first! I can only hope this feeling continues.  I was again struck with such pride and gratefulness as we visited school this week.  Denny and I got to watch proudly as Anthony strutted around on familiar school grounds after having his Kindergarten assessment. He can't be more ready! As if that weren't awesome enough,  we then witnessed Kayla telling her principal that she not only feels ready for a full day of school, but wants to go to extended care too.  This kid is ready to jump in head first!  We have decided to start her off with a full day and play it by ear. I have a feeling she will do great. Tomorrow, Denny begins his CNA course.  We are all so very excited for him and can't wait to see where his passion leads him ultimately.

Over the past two weeks, there have been way too many struggles and losses for some of our dear friends at St. Jude. We all know being there that it's always a possibility that when we say "good-bye" it could be for good. But for some reason, it never felt that way to me. Seeing these kids running and playing. Laughing and living.... it just never seemed like good-bye was even a possibility. How do you go from playing one day, to... not? Then it hits. That feeling. That awful reminder of how demonic Cancer really is. A reminder that no one is really out of the woods. And no one is ever truly safe. This is why we need a cure. Come on St. Jude! I know you are working on it, but could you please hurry it up? Enough is enough. 

I have my eye on my own project that I look forward to beginning in the near future. I hope it is a success and raises a lot of money toward Cancer research. Of course it's a book! I can't wait to find time to start it. Maybe when school starts? Haha. Riiiight.