A party for Kayla! Who's Going?

So, our friends back home have been working night and day on creating a fun and incredible night to honor Kayla (and raise some money to help us... thank you!!!!)  Just in case you live locally and want to go, but aren't on facebook or aware yet, we wanted to share the upcoming event details. We want all of you who support Kayla to be able to go to this amazing and memorable event.

I am told tickets are going fast, so I wanted to post this on the blog to get it out to you... the true supporters in this journey. I still find myself speechless. I can just say, this is going to be a night to remember. THANK YOU to everyone who is selflessly putting our family in your forethoughts day after day. It means the world to us to know we have such amazing friends at home rooting us on!


We love you ALL!!!!  As of right now, I am told, there are 36 tickets available. (posted at 9pm Sat)
 I have been working on a special presentation. It is very dear to me. I can't wait for you all to see it!!!


Here is the direct link for tickets:

http://curingkaylarose.eventbrite.com/?ref=esfb

January 28th, 2012

Every day at around 4pm this man comes out from behind his desk to go and feed the squirrels. It's hysterical! He is like Snow White out there!!! He brings out this huge white plastic bag from the trunk of his car and throws what looks like chunks of bread out. I am not exaggerating when I say that about 20 squirrels come running out of everywhere and get within about a foot or two of him. It's the sweetest thing. You can tell this has been a tradition of his since way before we ever got here. 

Today I went to a couple of stores to gather boxes for when we are ready to pack up and get our things into storage. I drove around some streets that I hadn't had a chance to familiarize myself with yet. There are so many places we have yet to explore here. I can tell you one thing, the best gift I have gotten is this rental car!!! This is not a town you can easily (or safely) just walk to places in. I am not sure yet what my car situation will be for the next brutally long leg of this. So, I decided I better take advantage of having a ride that will take me anywhere and stocked up on cleaning supplies, garbage bags and other necessities for when we return. They will be safely stored here underneath Target House 2. 

While I organized and cleaned here, Den and the kids went over to the art room for a lesson. It was nice to have some peace and quiet so I could gather my thoughts and build my strength. The past week has been particularly tough for me emotionally. I had a hard time staying positive and found myself in a state of shock and panic over the uncertainty of this whole situation's future outcome.  I think the hardest thing on any of us is that there are no guarantees about the long term.  If a person going through treatment could be guaranteed that after all is said and done that you would be free of worry, it would be so easy! You would breeze through the blisters, mouth sores, muscle aches, sedations, surgeries, nausea, and all of the other horrific side effects with ease. You would know that there is a reason for all of this. Unfortunately, we won't ever know. It's something that keeps me up at night. So, that is why I have been down. Shear fear. I do know that my little girl will keep fighting. We will all keep fighting right along side of her. I will pray and fight for a CURE. We are realizing why the search for a cure is even more important then finding what causes it. There are just too many unknown factors to ever pinpoint it. What we need is a cure. What we need is funding for research... pediatric research especially. 

Here is a picture of Kayla and Miss Ashley from OT. One of our favorites here at St. Jude. She is determined to find something to keep working on with Kayla so we can come and see her lots when we come back. Her neck is doing fantastic, but we will find something! ;)

Kayla is holding up their latest art project. Melting plastic beads to make a replica of meow meow. It was a good thing Meow only has 3 legs... they ran out of white plastic beads! See? Sometimes even strange things are for a reason.

For now, I am going to focus on the fact that soon we will all be home on our much needed break. I get to drive up my hill. Walk down my steps. Flop onto my own bed. And just cry into my own tissues if I need to! Tonight when you lay down on your own beds thank God that you can. Then say a prayer for those of us who wish we could. Just take a second to remind yourself how lucky you are :) 

 Fishing at the Children's Museum of Memphis

Such a cool place!

Tonight, Kayla and I met a little girl, Angel (she is 10) and her mom. They are from Mobile, Alabama. They have been here since May and will most likely be here through the summer. SO sweet. Kayla and Angel had fun playing on the computer together. We might get together for Pizza tomorrow night. Kayla and Angel's eyes lit up! They can motivate each other to eat. Angel is having the same struggle with her appetite.  

Magic peas and smelly milk!

Today Kayla craved peas. She just wanted them. No explanation. You crave and you shall receive little miss. Drenched in butter. :) (notice the milk shake next to her.. aka scandi shake that alone is 600 calories... tee hee)

ok Kayla.... we're cooking them..............!!! Coming right up.........

Yay! I'll just sit here on my cozy heating pad.

Wait...... not sure if I can do this! You cooked them and seasoned them exactly as I directed

Oh gosh. I AM asking a LOT. hahaha

And we do a ridiculous dance for the peas to go down........

Whatever!  It worked!!!! Tonight Kayla got down a whole bowl of peas. Half of a hawaiian roll. One pizza roll. 1/2 of a red apple w/ one scoop of peanut butter. She said that she prayed to God 3 times today over her wanting to gain lbs. God love her!

She did it!!! We all did the happy dance when she finished the last bite! Anthony still doesn't understand why she gets to "pick" her own dinner. Sorry Aj. You won't ever understand that at 4.

It was so funny. Tonight Kayla thought she wanted milk. When she smelled it she thought it smelled like spinach. She gagged. So then of course when Anthony asked for it, he thought it smelled bad and wouldn't drink it.  I explained to Kayla (very seriously and very irritatedly that I am NOT working) Remember?? Ok. So smell again and tell your brother that his milk is FINE. She totally understood. Walked around to his side of the table. She held in her want to grimace and said, "Anthony, your lucky. YOUR milk smells normal". He still put up a fight! But over a few rounds of this I saw his fear diminish and his belief in his sister and her senses return. He really trusts her! I pointed this out to her and now it is HER mission to keep her brother healthy.

It was hard watching Kayla go from sitting, to standing, to sitting on her knees while she ate. Her bones on her bottom are jutting out so much that she doesn't have much cushion. She can't sit on hard surfaces for a long period of time before she is in so much pain and has to switch positions. She hates it. We point it out to her.... why she feels that pain.  Her back hurts after radiation for the same reason. I am convinced it's not the radiation itself but laying on a hard table. Those backbones are BARE. There isn't much cushion there at all to support her weight. All be it tiny.  So, now she is again put into a big sister status. Not a sick person... but BIG SIS. I hope this frame of mind continues. Her being strong affects HIM. And that meant a lot to her tonight. I did a lot of secret whispers in her ear to get her to acknowledge how her presence is affecting him. She gets it. He is aware of her and how she is more sensitive. He will hopefully, in turn, be a bit more gentle. Kayla will hopefully, in turn, be a bit tougher!

Time will tell...........

Mail Update

As our treatments begin to wind down (only 4 more!!!), I was reminded today to put out a little blog post about incoming mail. After today, I wouldn't trust it to get to us here.  The mail has been very slow!

Once we return back to Memphis to continue treatment, we will again start our journey for the first few days at the Grizzly house where we don't have a mail box. Then, we will get settled into our new room at the Target House which will have a totally new address. Once we have it, I'll post details.

We had a nice day today. We got to hang with our new friends and watch a movie. Unfortunately the wiring is not working anywhere in Target 1 (they are working on it) so we didn't get to watch it in the Amy Grant room on the big TV. We will have to have our do-over once we all get back for our 2nd phase. We headed on over to the Art Room to make some crafts. Kayla made two awesome paintings which will be at the fundraiser. She is very proud of them. So are we :)

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!