Tuesday, August 28, 2012

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!


13 comments:

  1. God Bless you all

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  2. You are amazing!! One day at a time as they say... Good luck and prayers coming your way for the trip back to st. Jude's.

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  3. My dear Annie, You are an incredible woman. My heart ached for you as you described your emotions, right there ready to spill out, fearing for your sweet girl, being joyful for your two little ones when all you wanted to do is cry. It makes me so angry that you have to go through this, but so happy and so thankful that you have such an awesome team standing behind you at home and at St. Jude's. You are in my heart and prayers always and as you & Kayla travel to St. Jude's with your mom, I'm praying that you'll feel God's loving arms wrapped around you and your sweet girl, that you'll have peace, and that she will have continued good health, a future free of cancer. Stay strong, sweet Annie, and alway remember that we love you. Love, Blessings & Hugs, Bobbie

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  4. Thinking of you all each and every day!

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  5. Super momma! For birthday celebrations, the things that matter most are being with the people you love (and cake - which is easy!) Looks like Anthony had a great day (cute cupcakes!) Thinking of you as you prepare for your trip east. Hope it's all good news and will provide you with some relief and peace. xoxo Allie

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  6. Wow! I have been reading your posts every day but this is the first time I am responding. I can't imagine what you are going through. I admire you and your beautiful family so much. You are so articulate in expressing your feelings, my stomach clenched as I read about Kayla getting sick. I have been praying for Kayla and your family since this began, and I will pray in earnest that all goes even better than you hope for at your next visit to St. Jude's.

    -Tammi Clark

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  7. I wish you the very best of luck on your trip back to St Jude's, our prayers and thoughts are always with Kayla and your family! HUGS!

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  8. To the sweet, spunky, beautiful, kind hearted Kayla
    and her lovely, amazing, wonderful parents and brother,
    I found y'all and have been staying up to date on your journey at home - what a blessing! This last post (among several others), Annie, made me cry. I have decided to move back home to Nebraska to be near my family. With that being said, I won't be able to greet you with open arms when you return to Memphis in October (which I know is going to go perfectly!). Typing this makes my stomach knot. Oh how I will miss the incredibly special children and families that bless that building at 262 Danny Thomas Place.
    To say you have changed my life would be the understatement of the century. Your family's journey is not in vain. You have touched so many people with your story and unwavering love. You are a constant role model of strength, bravery, hope and kindness. You are what makes this world so special. And I hate so much that I won't get to see your journey continue through tri-monthly check-ins at St. Jude.
    Thank you for the blessings you are in my life. Our paths will cross once again - I am sure of it! I think of you always and will be checking your blog often.
    Hugs to Denny, Annie, my Kayla and Anthony. My prayers are with you always.
    All my love,
    Ashley, OT
    ashleyannbender@gmail.com

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  9. This comment has been removed by the author.

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  10. Sorry, I thought I put my post in twice so I deleted it and it turns out I had only put in once so here it is again:

    Poor Kayla, to still have to go through all of that. She is an amazing girl to still have a big smile on her face after all she has been through! I am glad the medicine is working and that is all it was. I will be praying for an "all clear" visit to St. Judes. Betty Criesco

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  11. Dear Annie - Oh my, what beautiful photos of Kayla (and jolly Anthony/dad too!). Healing love going to all, for whatever is needed, in big doses!
    So glad your mom will be with you for the check-up...yeah, Nana! Know you will remember you are surrounded by a big bubble of caring love from zillions of family, friends and all who follow your unfolding story.
    lots of love and hugs are yours. Take care, dear Annie. AuntieAnn

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  12. When you started this journey I had introduced ourselves to you. Our daughter Kristin was diagnosed at the age of 2 years 10 months with a Medulloblastoma. Oh- if only there had been a crystal ball to tell us the future, so that our worries could be set aside. Kristin will be CELEBRATING her 18th birthday tommorrow!!!!!

    We have had many years of worrying about every mis-step, headache, fever, nauseousness, etc. It wasn't until our oncologist reminded us that she could get sick just like everyone else...it didn't mean relapse. It was then that I started taking deep breathes before I jumped to any worried conclusion. We will always be looking over our shoulder, it's only natural. At first you live 3 months at at time, then 6 months, then a year with each MRI appointment. Oh how we hated waiting for the phone to ring. I feel sick to my stomach just recalling those times - then the feeling of absolute relief that followed the good news of NED. It does get better as the years go by. There will be days and even weeks when you won't think about it. When things are feeling more "normal".

    Kristin just wrote her senior letter and to our surprise she isn't angry about the cards she was dealt. She sees it as race she has to beat!!! See is a champion in our eyes!

    I think of you guys often, we have been down this road. Stay strong - you will get through this :)

    Julie Matheson (Cindi Johnson's sister-in-law)

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