Saturday, December 31, 2011

Good Bye 2011

New Years Eve day...... Wow. This year has been a different one. As we reflect on all the things we have been through. The ups and downs. The transitions. All the strange little things that have happened, all while we were wondering "why"? Why is this or that happening? Why is this not happening? Well, we know now why our house did not sell.  Obviously dealing with fixing up a "fixer" right now on top of dealing with Kayla's health would have been a little more then one family needs to deal with. I can only say thank you to God for sparing us that. We are so thankful that we will have the house that Kayla has grown up in to go home to to rest. Having her go home to a construction zone would have been unbearable. Now we know! So, if you are in a situation where you might be wondering "why?" just know that there is always a reason. Hopefully your ah-hah moment will not be so life changing! One thing I know is that cancer does not discriminate. Everyone goes through life thinking this type of thing only happens to other people. It won't be us. Well, you just never know. Kayla has had one flu her entire life (she was 2). Other then that, her health has been tip-top. We have mostly only given her organics since birth! We have done everything to give her (and Anthony) the best chance at health. Never ever eating fast food. Well, here we are on New Year Eve at St. Jude's in Memphis, TN. Here we are celebrating LIFE and the precious moments of every day. This experience has made us closer as a family for sure. We are trying to look at this time as a very special bonding time that might have slipped by if we hadn't had this unfortunate diagnosis. Maybe life would have just slipped by.... who knows. I just know we are here.

Today we got to go to the Liberty Bowl. It was Cincinnati vs Vanderbilt. We didn't really have a favorite team, so we went with the team that actually visited St. Jude the other day. Vanderbilt! It was a close game. We had so much fun! We had the nicest family behind us too. Lots of great conversation throughout the game. Kayla really liked the half time show. KC and the sunshine band played a few of their hits. It was fun! It was not so fun waiting to get out of the parking lot. We sat at a dead stand still for almost an hour with a kid in the backseat who really needed some Zofran and a bathroom to pee. Nice.

       Sorry, I know... a LOT of pictures. Some of you might enjoy them. Look at how close we were :)

Kayla's hair is about 1/2 of the way thinned now. She thinks it's hysterical. She is begging me to shave it. (especially as she keeps eating and drinking and pulling it out of her mouth) I just don't want to shave it if she is only going to thin and not lose it all. We shall see. Tomorrow is another day! It's not as bad as I thought on an emotional level. It really is annoying as it sheds. You kind of just want it gone. Strange.... it's like a teenager giving you hell. It's their way of making you crazy mad so that when they are gone you aren't as sad. Haha. I just know Kayla is beautiful inside. That is ALL that matters. Everyone in Memphis is falling in love with this little girl. She is making a lot of friends. Mostly adults. Not surprising to me at all.

Kayla thinking it's hysterical to pull out her bangs. Bald is BEAUTIFUL baby!!!!!   

Once we got back to the Target house to relieve some of those issues, we headed over to El Torro Loco for some Mexican Cuisine. Ok, it was really good! We know they are going to get to know us really well over the next few months. Finally, something that is "close" to what we are use to back in California. We are so spoiled out there. It will do... for now :)

Kayla is enjoying some sparkling Apple juice and is determined to stay up until 11:00 for the New Years celebration in NYC. We are having a lot of laughs and good memories. I hope all of you have a wonderful New Year filled with LOVE and Health! That is all we are hoping for now. Everything else just doesn't mean as much without it.

 Happy 2012 Everyone!!!!!!!!!! LOVE you all!!!!! Cheers :)

Friday, December 30, 2011

Friday, Dec 30

Today went pretty well! Today was truly the best "wake up" event yet. We also got word that soon Kayla will not be Prone anymore (meaning she can receive radiation on her back). We will be working with Amy from Child Life to try and get her ready for this. She will have to be completely still if she is to try it awake. Zero movement. Today, we almost hit our 1/2 way mark for radiation completion.  It was her 12th session.

We hung out all afternoon at the Target House. It was uneventful. We did go down to the Amy Grant room again to watch Toy Story 3 in blue ray. That movie is just SO good! Such a sweet story! :)

Kayla's hair is starting to really come out now. I am hesitant to shave it b/c on some kids with thick hair like hers, it just thins. We will wait and see. She is begging me to shave it bc the shedding is really annoying, but I explained that we will wait a bit more. She is concerned that Anthony will be freaked out when he sees her. I assured her that we will skype enough between now and when he arrives in just a few days that he won't be shocked at all.

Here is Kayla's journal entry for today. We keep encouraging her to write. It's very therapeutic. Mom should know ;) She read it all to us. When she got to the part about brushing her teeth, she explained that the rest is what she knows will happen. Too funny!

Yesterday, we got some tickets to go to the Liberty Bowl tomorrow. They were giving them out to SJ families. I have never been to a football game in my life. It's supposed to be 65 degrees and sunny! Such nice weather to be outside! That will be fun to go and see. I will bring my camera.

Then, it's time to start getting together some recipes for some fun New Years Eve yummies. I can't believe it's almost 2012! What are your plans?

Thursday, December 29, 2011

December 29th

 Thursday, December 29th 2011

This morning started out at 8:00am with PT (Physical Therapy).  It was Kayla's best session yet! The mobility in her neck has improved a LOT. We love how they use games to distract the patients from realizing you are actually working on so many things! Her balance is good but needs improvement. I think her lack in balance is not from the surgery so much as it comes from "use it or lose it"... and she hasn't been using it much at all. Once Anthony is here, she will be so much more active.

We had a lot of fun in there. After we left, they announced that they would be showing the movie How To Train Your Dragon in the Chili Care Center.  Perfect timing, because Kayla just started reading the book! They had puppets to give out as well. So, with time to kill in-between appointments, we headed over there! The puppets were so cute! One of their retired volunteers used to design toys for Playschool. She made a bunch of different colored finger puppets to give out to the kids watching the movie. It was so sweet!

We had our appointment over at Nutrition just for a follow up. It was quick and sweet. It's hard to talk about food while Kayla is hungry and not eating before sedation. Kind of not fair at all!

Before we knew it, it was time to go check in for Radiation. Kayla was SO excited to show Mr. Jody her picture that she drew of him. When he came out she practically ran it over to him. He LOVED it. He couldn't get over how good it was. He sent a picture of it to his wife over text message (she works at the hospital too in procedures). Then he paraded it through the entire radiation department. He was so excited about it. They have decided they are going to have it laminated and will hang it in what has become "her" room for sedation. The first picture was made four years ago from another patient and it is still hanging. We were all laughing hysterically at how much he has changed in 4 years! He ages well. HAHA!!
 Everyone there will be requesting portraits soon. We are expecting a lot of art assignments to come!

Radiation was long today. Every Thursday they do films. The X-Rays always add a lot of time onto this appointment so Denny and I had a long lunch and walked over to the gift shop to browse around. Once we got back, it wasn't long before Jody came out to get us. Kayla was up and her neck had been rubbed. She did pretty well today. There was some normal discomfort, but I think she improved by a thousand compared to last week. We had a new anesthesiologist today, so she was surprised at Kayla's discomfort asking if she was ok. The rest of us are used to it. We explained how she is actually doing so much better. It's almost like white noise to us... how sad! You know how when you have a baby and you know their cries. You know the ones where you can just finish up whatever you are doing before running over to see what they need vs that cry where your ears perk up and your stomach turns while you run to see how they got hurt? Well, this is the normal, go ahead and finish up what you are doing kind of cry. It can be startling to someone who hasn't heard it as many times as us.

Daddy carried her out today and she fell asleep on the way to get some ice cream and lunch. So sweet.

Tomorrow we only (and I say only lightly) have sedation and Radiation at 10:15. We will have to find something fun to do tomorrow. Maybe we will take the trolly into down town. Not sure, maybe just come home and do nothing. Sometimes that is just what the Dr. ordered!

Wednesday, December 28, 2011

December 28, 2011

Hello Everyone!

Today was a nice and easy day (as much as an easy day at SJ) can be. Kayla didn't have any other scheduled appointments besides Radiation. It was bittersweet. We got to sleep in because it wasn't until 11:00, but she had to be NPO until then. She was really hungry. It's always so hard to see your baby hungry.

We drove into St. Jude and didn't have to mess with security. I finally asked a family who has been here for way too long what the secret is to all of these people being able to fly through security without having to stop. It was like a secret club that we needed to be a part of. Especially on the days where we were running late! The answer was simple. We needed to apply for a temporary parking permit (good through the summer) from the security desk at the hospital. Well Duh! It's simple things like that which make the morning go so much easier. Especially when you get the same guard every single day asking if you are there to see a patient. I know she isn't bald yet, but clearly our patient is in the back seat! How does he not recognize us by now? Anyway, that is nice to have that frustration behind me. It was a relief today to have us just waved through without having to stop!

We had some time so we stopped by their library to exchange a couple of books. It's a wonderful little library with a very sweet librarian working there. She loves it when we come.

The minute we walked into the Radiation Oncology waiting room, we were called back. What great timing! Kayla was laughing and joking with all of the nurses and techs in the room. She is really so funny! Everyone in there just adores her. She has everyone putting down their pencils just to listen to her questions and stories. Oh and we just LOVE it when she tells embarrassing tales about us. Thank you Kayla!! We love you. Why is it that kids always know exactly how to do that? I remember all of the funny stories that Mrs. Weiser (Kayla's wonderful Kindergarten teacher) used to email me about. Oh if she could see her now!!! It would bring a huge smile to her face. Mrs. Weiser, this morning while checking her in for the day, Kayla would have cracked you up. The sweet and unsuspecting woman was wearing this pretty necklace made out of what looked to be like aquamarine. Kayla was in awe of it's beauty. OH and matching earrings? Dangles? Nothing could shake her focus. She wanted to know everything about it. Not what it was made from necessarily, but where she got it. And was it hard to find? Where could we go to get one? The woman was so sweet explaining that her daughter bought it for her birthday. It was her birthstone. Kayla's eyes lit up. She knows that her birth stone is an Emerald. This conversation went on and on for about 5 minutes. In the end some mini-dangles were promised to her. Kayla will never let this woman forget it either. It was hysterical!

Anyway, back to my story about Kayla about to have her treatment. So, one of the techs that we just LOVE is named Jody. He is such a sweet guy! He has a soft spot for Kayla now. So, anytime he sees our name on the schedule (even if he isn't scheduled to be in our room) he always stops in just to say a few words to Kayla. He loves how many questions she asks. Apparently he has this book that his kids have outgrown that is geared for her age. It has answers to a ton of kid questions. He said he is going to try and find it for her. Today she mentioned that the picture that some kid drew of him that is taped to the cabinet is not accurate. She said it doesn't look anything like him. We challenged Kayla to top that drawing with a new one. She worked on it really hard in the craft room tonight. I can't wait to show it to him. He is the oreo king. When Kayla wakes up, he is there turning regular oreo's into double stuffed. He is just so kind..... we can't wait for him to see his picture tomorrow.
Here is Kayla's Picture!
Pretty good, huh? (oh, and in the bubble are the oreo's) To be fair, I bet the person who drew the first picture was a LOT younger! Cute though. I'm sure he will love it!

When Kayla woke up she did great! When we first walked in, she was sitting up drinking apple juice which really helps her to get over the dizzy feeling. They were helping her with her shoes! I couldn't believe it and went for my camera right away. This was a first! The way she looked, we half expected her to just hop out of bed. Unfortunately within a few minutes, she was curled up in her bed in the fetal position writing in pain in her tummy. It's right where the radiation is targeted. So, it's quite normal. It does go away quickly though. After a few minutes of trying literally every position and getting nowhere to help with her pain, her daddy swooped her up in his big strong arms and carried her out. She quickly quieted down and we all just looked at each other with a slight look like, it's all good now. That was it for the day! We came back to the target house so Kayla could eat while I tried some more trouble shooting on the internet again. It went down and I hadn't been able to get it up and running.  Honestly, there really wasn't anything new to report anyway. You all know I love doing the blog. I love that this is my diary for Kayla. Her journey. Her story. Her memory when one day she will want to read it.
 Jodi handing Kayla one of his double stuffed oreo's
 Here is a nurse admiring Kayla's new fabulous shoes and lacing them up for her. Looks like we will be on our way...... or not!
 From the above, to this in 5 minutes. She hates this picture. She realizes now that everyone was on the FLOOR trying to make her comfortable. Tomorrow we will try a new strategy. Straight to daddy. No wagon or wheel chair. We shall see....... ;)
Jodi put his oreo's in a take home bag. We all cracked up when this was the only bag they could find!

When we got back to the apartment, we had our first Netflix movie waiting for us in our tiny mailbox! One more slice of normalcy please. Thank you!!

Tomorrow we start at 8am with Physical Therapy. I will post more tomorrow.

With Love, from Memphis

Monday, December 26, 2011

Day off?

Nothing new today. I promise! It was a nice and easy day. Maybe I should count this as a blessing. It was medicine given at the scheduled times. Wonderful FB Video chats filled with info and laughter. It was a much needed shower for someone (KAYLA) with a much anticipated bandage change. It does itch so much when it's time. Tomorrow we start our day at 7am. for a blood draw. Radiation at 7:45. That is the earliest start time yet!  I almost didn't blog tonight because there was nothing new to share, but Denny made me feel guilty reminding me (and quoting) the messages from our daily readers. I get it. I check my email daily. I get it! haha. I felt compelled with love to sit here and at least write something!  We are ok. Hanging in there........ I still want this all over with. I am still scared. That's the truth. More tomorrow friends. Promise. (ok Den? I promise!) Tomorrow will be the start of more to share. It has been wonderful to have NO new info. I can't promise that......... but I can HOPE :)

update. Ok. After talking a bit more behind the scenes:

I know that a time will come where Kayla will one day understand the severity of all of this. For now, She is at almost a perfect age. She is old enough to walk through this somewhat. Soon enough... she will truly get it. Any younger and she would have been at an age where "tumor" or "get that bump to go away forever" would have been hard enough to explain. She gets that. We know that just above the bend is an age where she will understand what "relapse" means. And "cure". It will be when she truly is old enough for that that I don't know how I can hold back the flood of tears to come....... I pray for that strength.

Sunday, December 25, 2011

Merry Christmas!

I have to say, Santa did pull off some magic here in Memphis. Thanks to that car and a lot of love from friends and people we don't even know yet, Kayla had a wonderful Christmas filled with surprises and lots of love.  Like most of you with little ones, we were up nice and early. I have added a lot of pictures for this post. It was hard not to. It tells the story so much better then I could!
This was our tree this year. It will be SO easy to take down!
Kayla got a matching Angry Bird t-shirt and necklace with her buddies Claire and Antonia. She misses them so much!
Kayla SCORED with some new friends from Novato who work for Pixar! Thank you for all the awesome gear!!! This was SO kind :)

Mrs. Clause came through on the light up shoes. Kayla was so happy!
Check out the shoulder buddy. His name is Breezee. He sits on your shoulder (held on by a magnet disc that is under the shirt) to listen and be there if you are having a hard day. So cool! Santa found him at the St. Jude gift shop.
 Our new beautiful Crystal guardian angel. Kayla LOVES her!
 Angry Pigs!
 "loop-de-loop earrings" as she asked Santa for
 The AWESOME bike that Kayla's buddies Megan and Claire picked out for her. She was wondering what the helmet was for! She is SO excited to see it in person. What a generous and amazing gift! Thank you so so much!

 Loving all the books. This girl LOVES to read!
 I just loved this shot. So cute with Breezee ;)
 Denny reading the book that his sister Nicole wrote and her husband Geoff illustrated! SO cool!!
 Kayla admiring some of her new things in the mirror. She loves them so much!
 Ok, we thought we had done pretty good! We even had all the trash cleaned up and then the "Target Santa" came by to drop of this huge bag of toys. I was in the shower but Den said that they came inside while Kayla opened it with a flip video. Some of it we will donate to kids who didn't get anything. Nothing like giving back! It's just not fair to have gotten so much when so many got nothing at all. I will be on the hunt for local places tomorrow. Who needs 3 lunch boxes? There were two back packs as well.  VERY sweet though! We didn't expect that at all.
After we finished cleaning up the next mess, we decided to go downstairs to the Amy Grant music room and watch Kung Fu Panda 2(Kayla's favorite movie these days). I took a nap. :)

 This is the Amy Grant Christmas tree. She decorated it!
 Amy's actual lyrics as she came up with them. I love that she donated these too! Awesome :)
 Not a bad place to watch a movie on Christmas! Anthony is going to LOVE this room too.

After the movie was over, and I had my power nap, we decided (with my coaxing) to take a drive and see some other parts of the town we hadn't been to yet. We even drove down to the famous Beal Street. We will have to park and actually walk up and down it next time. It was all blocked off. Not sure if they always block it off or if it was just today. We shall find out! It looked fun though!
Kayla was getting really hungry and only wanted a burrito. Well, there aren't too many places open on Christmas, let alone places that sell burritos. We found a little place not too far away and popped in. It was no Tommy's Salsa, but she got her burrito fix. :)
We had some awesome FB video chats with our families today and now the day is over. We have tomorrow off too. How is it we hardly did anything and I still feel so tired?! We hope you all have had a wonderful holiday filled with love and magical memories. Good Night!