Tuesday, January 24, 2012

Tornados and Calories

What a busy couple of days! We had a tornado warning the other night which was kind of fun. The lightning was so pretty! At about 10:30pm we had to wake Anthony and Kayla because they evacuated us down into the lobby to wait for it to pass. It was so sad seeing all of these sweet kids having to be woken up and dragged down the stairwells. We are on the 5th floor.. the "penthouse" if you will. The mom across the hall is here alone with her son who just had a bone marrow transplant. He was having a real hard time walking so the sweet mom had to carry him... allllll the way down. I thought she might fall so I stayed with her the whole time. I just couldn't leave her. Denny ran off ahead with Kayla who is light as a feather which will lead me to my next update.   (all ended well on the tornado front... obviously!)

This is the sky ALL lit up. I wish I could have caught it in action... it was awesome! Normally it is pitch black out there.

Ok, so now... our constant fight for the battle of the bulge with Kayla. I think I might be winning this battle. I didn't even realize that I had been in on the game. It's not pretty.  Last week we were so happy when Kayla gained an ounce. This week we were devastated that she lost a pound!  It is so hard to see. I feel like she could just blow away in a heavy wind. I broke down in tears yesterday explaining to her how important it is to EAT! That food is her fuel. Like gas for a car. As worried as her team of docs are here, they aren't going to do anything drastic as far as TPN or an NG tube because we are going home soon and they are hoping that will be the BEST medicine. AMEN to that!!!  Last night she had a scoop of peanut butter and ice cream for dinner and one bite of a banana. Whatever she will put down at this point. Poor Anthony does not understand why he can't have the same things for dinner. I don't blame him!!
                Explaining to Anthony why he can't have donuts and ice cream for dinner.... FUN! ;)

Every Ounce Counts

Reality. I showed Kayla this picture and she gagged. She said she hates seeing her bones. New strategy. Bluntly honest. I will show her this pic every time I need to BEG her to eat. This photo is why it took me so long to post my new update. This was a hard reality for me to swallow. Please pray that she eats... and eats...... AND EATS!!!! 

Denny continues to knit. 

On a positive note... because you KNOW I have to share the good, bad and ugly: we are making friends! Kayla said her highlight of the day was getting to play with Ella! They kicked the soccer ball around outside and giggled and played. I am SO happy!!!!! 

They are the same age and grade. This is the best picture I have seen of Kayla in a LONG time. Proof that laughter and FUN are the best medicine!!!! 
ps. Notice the new dangle earrings? That would be from the lady at the front desk of check in that kayla was bugging about her jewelry. She made a point to find Kayla today to deliver her promised dangles. Love love LOVE!!!! SO sweet :)

Anthony is newfound friends with a sweet 4 year old boy named Connor. He is about a week ahead of Kayla in treatment. He has ATRT. A very rare and aggressive form of "the C word". Please keep Laurie, Mike, Connor and Kyle in your prayers. Connor's Caring Bridge Site . They get to go home on their "break" Thursday. We will arrive back here around the same time and start our Chemo around the same time. We are on the same protocol. We are hoping Kayla meets a new friend like Ella (because Ella will be finished with her treatment soon). Friendship is such good medicine! Until then, Kayla can hang with Anthony and Connor.  I am happy to have a mommy to chat with and who we will SADLY be going through this with. Hopefully once some nice weather hits we can have family dinners and LOTS of play time outside. So, today was a GOOD day filled with friendship. Just one more "gift".  

Good night all. Thank you for the prayers!


  1. Thank YOU and your beautiful and strong family. Constant prayers, continued support and endless gratitude. God bless, Mary and Frank Hoburg

  2. We have been following Kayla's blog from the beginning, and even though we don't know Kayla, we send our prayers and loving thoughts to all of you on a daily basis. We hope that Kayla's Novato fundraiser is a huge success. My husband is a photographer and has donated a photo to be auctioned at the event. I have posted information about donations and the fundraiser on my Facebook page as there are many friends out there who would be interesting in helping. Healing thoughts to all of you, Lynn

  3. Carol HadjiandreouJanuary 25, 2012 at 8:57 PM

    Thank you for the wonderful update! It's so true, no matter where we are, friends make our world go around! We continue to pray for Kayla and each of you every night, but we will ask the Lord to bless Kayla with the desire to EAT as well. May your time going home be wonderfully blessed! Sending our love Carol, J-P, Kayla, Bella, Kenna and Ava xo

  4. Annie,
    I wish I had some good advice to help Kayla with her weight. When I was in the hospital I wouldn't eat because I had to be hand fed my someone since both my arms were in casts. Also I keep telling them that I had a performance coming up and had to watch my weight. I didn't realize that I won't be dancing. I got very thin. You know how you can touch your fingers around your wrist when you put your other hand around it; I could do that at the top of my arm! My advice is lots of milkshakes. They are easy to eat, can suck on them while doing other things, they have a comforting feeling, and the milk is good for you. Stay Strong, Barbara

  5. Capital F for Frustrating! UGH! But she did have that bad day the other day when she was vomitting, so lets all just pray and beleive a little dose of Denny's home cooking and LOVE and her kitty cat will be just the perfect medicine.