Sunday, August 12, 2012

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.
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.


  1. Love you. Love Kayla. Love AJ. And love Denny. Your words fill me with joy and hope and gratitude and reality. Thank you. I'm here to help you in anyway I can with your book, child care, fundraising and support. I'm so excited to see Kayla at school! XXOO -erika

  2. What a wonderful and inspiring post! Kayla is looking so well, those rosy cheeks brought tears to my eyes. We are so happy that you've started to settle into your new normal. Third grade and kindergarten! CNA courses and book writing. Awesome. You all are in our prayers daily, and so are your friends that are still at St. Jude.

  3. Love and so appreciate the update--and hope to run into you in town one day soon! Excited for Denny's upcoming adventure, and eager to hear more about yours, too. (I've been in the book publishing industry for 18 years...I'm at your full disposal, my friend!)

    (p.s. That last pic of Kayla and Denny is my very favorite of this whole blog so far!)

  4. I am so glad that Kayla is feeling much better and eating a lot and that you and Denny have found your calling through all of this. It is great seeing Kayla having so much fun! That last picture of Kayla and Denny is the best, so loving!

  5. I think we should contact American girl and have them make a Kayla Rose doll and you write her story and have some of the proceeds go towards the CURE! And she could wear the beautiful logo. That idea has been kicking around in my head for a while now!

  6. I second the American girl idea! :)
    We love the pictures, especially the last one!!! We are so happy for you and your family finally getting some much needed normalness and fun. You all deserve it! Love you much!

  7. Annie, yes!!!! Write that book!! You are so talented and have such an important warrior to tell the world about!!! Xoxo happy back to school week to Kayla and Anrhony!!
    Carrie Brophy

  8. Dear Annie, that last picture is definitely a keeper! It's so beautiful and conveys such love and emotion between Kayla and her daddy - without any words needing to be spoken! I would get that in a frame pronto!!! I'm so happy everything is going well and Kayla's "coloring" looks wonderful. What a week she is going to have with starting school and seeing all of her friends! You are so lucky to live in such a wonderful community.

    Our thoughts and prayers are with you on a daily basis as well as to all of the wonderful staff and patients at St. Jude's.

    Much love, hugs, & kisses to all of you!!!! - Robert & Cindi J.

  9. Love reading about all the delightful new parents so awesome! Such happy news for Kayla with the excitement of school and friends coming up, eating going so well. We have kindergarten cousins across the country - Anthony in CA, Lucas in MA and Evan in PA! Love to all, as always, AuntieAnn

  10. Who would have thought Annie writing a book! You have a true knack for writing and it truly would be from the heart! Get writing so I can read it already! :) I'll be sure to have a box of tissues near by. So glad things are falling into place your "new normal!" So excited for Kayla to be going to school she is definitly happy to be going! Continued prayers for Kayla, Anthony, Denny and you for all your new endeavors! You all have so much to offer the world! Love You All!
    Erin Melrath