Saturday, November 12, 2011

She knows & other exciting news

This morning started with a jolt. Denny and I woke up and were reminded that this nightmare is very real. We did get some rest though which was great. I think our bodies knew what is in store and allowed us to rest our swollen red eyes.

As the morning went on, we continued trying to act "normal" with Kayla. I think it was probably pretty obvious that something was up b/c we let her have what ever she wanted and never said no all day. The kid could have asked for the moon and you would have seen me happily plumiting off of my roof to try and grab it. At around lunch time she had a break down. She was sobbing hysterically because we wouldn't let her go roller skating or ice skating (which we stupidly promised her yesterday). We didn't even think about the risk of resporatory infection and how that could delay the important tests and procedures to come. So, we told her she needed to stay home. She just had had it. No fun. No friends & it was all OUR fault. So Den and I just looked at each other and knew it was time to tell her. We of course only told her what she needed to hear. We said that the reason we are keeping her home is to keep her healthy right now. That we heard from the doctors who looked at the pictures of her brain. That the doctors know why she is getting horrible head aches and why she is throwing up. She looked at us so curiously. She is such a smart girl. I quickly said that there is a small bump under her skin (and I touched where it is). I said that the bump is pressing on her nerves which is what is making her so sick. She said, "am I going to have to have surgery?" We told her that the doctors are going to do what they have to do make sure she feels like normal happy Kayla again. We promised her through teary eyes that we won't leave her side. She won't be alone. She did something which we didn't expect. She sat up straight and smiled. All she cared about was hearing that she would feel better. Luckily for her, she is seven. She doesn't know all that we do. The risks and all the other scary things. She just wants to feel better.

On another incredible note:

I just received a call from a dear family friend who has made contact with the surgeon!!! How blessed are we right now to have a connection?!?! Now, we just wait for a call from him and for what is to come on Monday.

Tick. Tick. Tick. Tick. Can someone PLEASE make the clock move just a little faster?

Also, I forgot to mention in my first blog, we will not know for a day or two after surgery if the tumor is malignant or benign. All we know is that it is not attached to anything and that it is smooth. Those are two wonderful things which offer us hope.

Night night all. God Bless!


  1. WOW. Like I said on my FB page, I'm so very proud of the exceptional job you're doing as parents to Kays. We are all so very blessed to have EACH OTHER. And the way Kayla took the news is just AMAZING to me. She's an old soul for sure. What a Trooper she is!

    I can't wait to hear more news. And Yes, the time is passing by wayyyyyy toooooo slow for us as well.

    I also can't wait to see all of you and give you neverending hugs. See you soon and we will be there every step of the way as family. Thank goodness we're all there for one another in times like these.

    Kayla, you're our HERO!!!!

    Love & Miss You ALL!

    Neena & Baapaa

  2. Lots and lots and lots of prayers being sent to Kayla from us right now. God will take care of her. I just have this feeling that it is most certainly benign and once removed she'll quickly return to normal and this will be just a bump in the road. She is going to be just fine. I know it. She is in the best of hands and will have quite a story. When she's 90, she will be tellin her great grandkids about this. She will only be stronger as a result, but she's going to be just fine. XOXO

  3. So proud of you both and the positive way that you presented all of this overwhelming news to Kayla. Children are so resilient & so willing to accept whatever you say when it's done in such a positive manner. John and I and the families we've met through LLS all share the same word that you used in your blog and that is HOPE. You are an amazing family and your strength will take you through these next days on through Kayla's journey back to perfect health. Praying for all of you and sending love & hugs! Bobbie & John

  4. I'm sorry to hear about this news. I wish you all the best. It's good to know that Kayla has a great attitude about this. You are such a wonderful family and I'm honored to know you and Kayla. I'll keep Kayla in my prayers and if there is anything I can do to help please let me know! She is such a smart, fabulous and positive child I know she'll have a great attitude about this. Thank you for keeping us informed and please know I'm sending all my love! -Shelley S

  5. I read your entries this morning and have been without words since--I’m overwhelmed with the shock of the news and with the incredible way you guys are handling everything already by trusting your instincts and taking each moment as it comes. And I’m so grateful you’ve started this blog to keep everyone informed, thank you! Your strength and hope and grace are such blessings to Kayla, and her innocence and sweetness and youthful practicality are such blessings to you all as you navigate her way back to good health. (Everyone at UCSF has been so good to Scarlett during her stays there--including Dr. Gupta himself!--and the nurses are SO caring. I just know they will make Kayla feel like the princess she is!) Much love to you all.

  6. Hugs and Kisses to you and to Kayla. I'm thinking of you. Susie

  7. Dear Annie,
    I was shocked when Erika told me this afternoon. I a so sorry. She is in my prayers and I shall be thinking of her tomorrow. I pray everything goes smoothly. She is such a joy. We will miss her in the classroom.
    Sepeatom sends his love and wishes Kayla the best of luck.
    Be strong and God bless.
    Laila (Sepeatom's mom)

  8. Thinking of you so often through the day and night, wishing we were closer and could help - if only to give hugs and bring suppers! We do know how resilient kids are in their recoveries, looking forward to getting the good news that all is well. Please give Kayla a gentle hug and kiss from her Pennsylvania family, sending out healing thoughts and prayers and lotsa love to all! Auntie Ann and all

  9. Annie.....I can not imagine what you guys are going thru. I have been reading this and I get tears in my eyes and my heart breaks for you. I remember how strong of a person you were I have high school and I know you are even stronger now. My thoughts and prayers are with you and your family. Praying for all to go well and for Kayla to get better. Hope all went well today with the doctor. Keep your head up and stay strong.....if you need anything please let me know xoxo