Saturday, March 17, 2012

Day -2

Happy St. Patty's Day to you all!

I just got back from my not long enough visit with my baby girl. I have to say, the promises of Helping Hands is a bit disappointing. We have called for them twice and no one has been available (or answered) during the hours they claim to be there. It's so hard walking into the room and not knowing the nurses or doctors like Denny does. Kayla is my child too! Denny does his best to update me and tell me everything I need to know, but I feel isolated and trapped here with a child who is not yet old enough to be let past the front desk. I hate that only one parent at a time is allowed to be with her when we work best as a team. Once we realized helping hands was failing us yet again, Denny decided to take Anthony down stairs to a play area in B clinic so Kayla and I could have some time together.  I can see it in Kayla's eyes and hear it in her voice that she wishes we could both be there with her. She asks me to clean her ears and put bacitracin ointment on her scar because dad wont or doesn't put it on like I do. When she feels pain, she asks me to call her dad and ask him if it's time for more medicine. We wait through multiple voice mails before he finally picks up so I can ask him since I have no clue what medicine she has in her and what is due next. It's a broken system and I don't like it. It's all we can do for now. Could we have left Anthony at home so we could have had this time together? Yes, sure. I can tell you now, I would still be just as broken hearted... just missing him instead. It is the most painful thing ever to first of all have to go through this, but to not be there together through the tough moments and sleepless nights.  I am just grateful that her third and final "dose" of chemo is over for round 1.  Kayla's new symptom is a very sore jaw.  It hurts to talk or chew. She is trying her best to eat apple sauce and soup, but even that is hard. She is still keeping up with her mouth care as well, but even swishing the liquids around is hard for her.  I asked the doctors how long we could expect her jaw to ache. It was hard for them to say. Every person is different. So all we can do is hope that this is the worst of her symptoms because more can arise. I pray hard that her sterility is not affected. I pray for the side effects to remain mild and long term effects from treatment to stay away! I want to wrap my mommy shield around her and protect her from all of this. I cried today when I was with her. I tried so hard not to... I just told her how much I love her and how proud of her I am. I told her again how much I wish I could just trade places with her so she wouldn't have to feel any of this.  She nodded her head and tried to comfort me. She tried to comfort ME. She is such an incredibly special little girl. So caring and so kind. 

I had fun decorating her window with the special paint brought in by Child Life. She wants to paint the windows, but just hasn't been feeling up to it at all. I was tired of them looking so sad. I had to leave my mark so that even when I am not there with her, she can see a piece of mommy when she's sad or feeling awful. I just love her so much. 

I asked Kayla if she remembered taking the video yesterday and she didn't. I tried playing it back to her to see if that would jog her memory a bit and she still didn't remember it at all. It goes to show how strong the medicine is that she is on. My hope is that she forgets her days inpatient all together! I wish I could!!! Even if she didn't remember yesterday's video, she did ask if she could do another. So here is her latest video message to share. I finally just figured out how to link the video from YouTube directly to the blog instead of just a link! Took me a while. Sorry! Also, I had to purchase more space for photos! It seems I used up my 1GB of space. For $5 per year I should have PLENTY of space now.  Totally worth it, don't you think?

Dad says he is going to get her into her new green nightgown that I got her after her bath. Hopefully he will take a picture of her in it for me :)

Thank you Den for the picture! I bet you are happy to finally be in green... It's 6pm. Better late then never!


  1. Me, too! God bless you all so much. Hearing your beautiful and love-filled voices is a gift beyond words. Love, Mary & Frank Hoburg

  2. Dear Annie thanks so much for sharing those wonderful videos with us! I just love to be able to hear and see Kayla (technology is amazing don't you think?) she looks so pretty in her green Nightgown, we love you Kayla and we will keep you in our prayers sweetie.

    Lost of love from Negrete family:-)

    1. I meant LOTS of love... hahaha sorry!

  3. There isn't a day that goes by that Kayla isn't in my thoughts. I smile every time I see her under the healing quilt and I keep reminding that quilt about the magic Kris and I put into it. Stay strong little one, this hard time will just be a blip in a long and happy life. Cate x