Saturday, March 31, 2012

Day + 12

We woke up slowly. For the first time since Chemo, the smell of Coffee didn't make Kayla hurl, or want to. I  have found that if I spray some bath & body works body spray in the air around her, she is fine... she even likes it!  We spent the morning straightening up the tiny apartment which was much needed. It only takes one day for four people to clutter up this tiny space!

We decided to go outside for a little while before we headed into the hospital to start our "St.Jude" day. It was HOT. I can't believe the weather out here!!! If this is any inclination as to how the weather will be this summer, we have been warned. I love it though. I do! We went outside and met up with some friends,  Laurie, Jenny and Sarah. It's so great to finally start to getting to know some of the families out here. I think our guards are down and we know we will be here for a while and it's ok to get "close". Just as we were all having fun, it was time to go. We headed on into the hospital 30 minutes early. We just knew that even if we went in early, we would end up running late as usual. We had a date with ALSAC. It's time for their annual "Thanks and Giving Campaign". We were happy to help...

As we left the hospital to head over to the ALSAC building, we were surprised at how much hotter it had gotten. The kids were rearing and ready to go! They are doing a lot of construction around here so of course, I made a few wrong turns into some wrong areas. Finally, our car made it into the parking lot!  We walked in through the huge glass doors and were greeted with beautiful friendly faces expecting us. The halls were empty (because it's Saturday). The walls were covered with beautiful portraits of many St. Jude kids. There were rooms off to each side filled with memorabilia.  The sweet and gorgeous greeter told us that she too was a St. Jude patient when she was Kayla's age. She had ALL (acute lymphoblastic leukemia) and had relapsed three times! It goes to show that even after that, you can still be cancer-free in the end. We LOVED her spirit and enthusiasm. You could tell that working here was planned and exactly where she belonged after being here throughout HER journey. She is another example of hope.

Thanks and Giving campaign. This is what they were shooting today. Sorry... I didn't have my "good" camera obviously!

We walked back and got Anthony settled in with an abundance of snacks, drinks, games and FUN while Kayla had her own fun. I have to say, everyone at ALSAC is so patient and kid centered. They know what it takes to have families who can hang for hours and make magic happen. It is fun to be a part of.

Kayla got into wardrobe and had her make up done. Of course she was hesitant and checking in with her parents and especially mom when it came to every step of the make up process. I also learned that Kayla regularly visits my make up drawer at home... haha. We swapped out earrings and had a blast getting ready. The girls at ALSAC started to get to know our Kayla... the real Kayla. Remember, their first experience with her was straight out of her first round of Chemo. We were lucky to have her cooperate at all!

So, they did a VERY good job at making her just look natural. A little brown enhancing. A smidgen of mascara on what remains of her lashes. A little blush on the apples of her cheeks and powder to keep her dome from becoming too shiny and she was done! Well, one of the "ideas" was to have her holding a powder puff and a stick of lipstick. The idea was to have her put it on herself.... the example was of a girl with lipstick all over her face. Those of you who know Kayla know that wouldn't fly! She is TOO neat and clean for that nonsense. Maybe if she had been prepped a day before, that could have worked. She went with the flow and asked her normal 1,000 questions. She matched that with 1,000 expressions. We all had a blast with Kayla today. Here is her face after the lipstick! WHOA...
These pictures will air in black & white with a smidgen of green infused into the wardrobe by choice. I am too tired to remember the name of it... but you know what I mean. You've all seen it!

We did a few different approaches and found a few favorites in each. Kayla was full of spunk and laughter. She was good at being "serious" when asked too which seems to be ALSAC's favorite look on Kayla so far. 
Dad keeps her laughing....

All in all, such a great thing to be a part of. If we have learned anything though all of this, its that pediatric cancer is grossly underfunded. We are happy to dedicate our time to help in any way!

We returned back to the apartment to have a snack and to gather up our outdoor toys. I gathered up my clippers. We would FINALLY be allowed to use the salon room that they have here (next to the work out room) so that I could give Anthony and Denny some haircuts. What a treat that was to not have those tiny microscopic hairs to clean up after. We headed on out after to play play play! 

The clouds started rolling in and we felt an occasional big drop fall on us from time to time. It reminded me of Hawaii a bit, minus the smells of those amazing tropical flowers. The grass seemed fluorescent green and the air was warm and a tad moist.  Families were starting the barbeques and we were all getting hungry smelling them!  

 "UM... Anthony... GET OUT OF THE TREE!!!!!"

 Kayla taking a time out enjoying looking at the charms on her bracelet that remind her of home

 This kid is SO athletic! It's crazy!!!

This SHOULD be their softball pic this year. Next year will look a lot different!

We had a heart felt talk tonight with Kayla about various types of cancers. About how some tumors can't be operated on at all. About how some only end up in a partial resection (and what that means). She understands that we were lucky to have hers completely removed. She also understands that sometimes it still means that the cancer can return after treatment. We explained how important all of this research is and how we need to raise money for a CURE. That even if this treatment is her cure... it might not be the cure for too many of these wonderful kids. We are happy to help however they need us while we are here... and we will continue our fight to find a real cure until there is one!

Friday, March 30, 2012

Day + 11

Happy Friday Everyone! So, today Kayla had another platelet transfusion. Her hemoglobin is holding steady but if it goes down more, she will get another blood transfusion as well. She's doing great though! Her energy is good. I think it's dipping a little, but all in all, it's great considering! Her ANC is now up to 700 so it's on its way!  It was a LONG day at the hospital. We started at 7am and finished at around 4:30pm. Kayla had her hearing tested. All is good so far! So far the Cisplatin has not done any damage. Thank you God!!!  Kayla had her lungs tested. All A.O.K. She had a visit in OT so we could hang with our friend Ashley. I showed her the video I started and we laughed and laughed. I can't wait to share it with you all! We had school! Kayla always enjoys her time there... no surprise. I forgot to mention, they gave her a shirt when she started Chemo that says on it, "The Chemo ate my homework". SO clever... and we have used that excuse now a few times!

All in all, it was a good day. Long, but good. It's amazing how you can have a day this long at work and it never seems quite as draining as what it's like being at the hospital all day long with two little ones. Still, it was a day we got to spend together and for that I am very thankful.

We had a nurse come here a few minutes ago (again clearly noted that it was formality and that they LOVE Denny and want to steal him). She came so that we could be cleared to do lipids here. Of course we got a huge "check" and all is good! The kids were hysterical. When they heard that everyone wants to steal their dad you should have heard their screams of protest! It was so funny! We all laughed and laughed. Kayla knew it was not really going to happen, but Anthony wasn't so sure. I think he really thought he was going to lose his dad to a bunch of nurses. HAHA. 

It's 8:30. I feel like it's midnight. Good night all! 

Thursday, March 29, 2012

Day + 10 - They are back!

Finally! That felt like forever!!! It's amazing what having a tiny little fever can do to a cancer patient (and family). Kayla was finally cleared this morning to be able to come "home". Her ANC was 400 and that was enough of an improvement that things were heading in the right direction. Kayla's platelets are still on the low side so she might require another platelet transfusion, but nothing needed right now. Nothing ever grew on the cultures. We can only guess that her body doesn't like being at ZERO. Who's would??? For the next 24 hours we will do urine cultures. She will "go" in where it is transferred to a sterile container and refrigerated. So, tomorrow, every time she has to "go" we will head over to A/T where they will have her huge container on ice. For now, it resides in our tiny fridge. Can you imagine how appetizing that is to look at every time you open the door??? Count your lucky stars. What I wouldn't give up right now to have a healthy child and not be going through this. I'd give ANYTHING. Thank you so much again to all of you for the kindness you have shown our family during all of this. We are forever grateful............

The sun was shining and the weather still hot! Time to get outside and play for a bit. We brought the soccer ball and our baseball gear out so we could have some fun.
Not the most ideal way to try and hit a ball... but you have to give it to her for trying!!! She had fun and that was worth it all.
Anthony had a blast playing frisbee with his friends Mae & Keegan

Tonight, Tri-Delta visited (a HUGE supporter of St. Jude) to do tie-die projects with the kids. It was a gorgeous night out and the kids had a blast! I only saw the crowd through the window b/c I was in making dinner as requested by Kayla. Salmon, Salad & Carrots.  My pleasure!!! SO happy to have her home & eating! 
Tomorrow is going to be a very long day. We start at 7am and go until........... Who knows, right?   ALSAC called and we have a few more fun events coming up to help out with. The first starts for Denny tomorrow at 11:00 with another voice over.  I can't tell you how happy and relieved we are to all be together again. Kayla's spirits are GREAT. She is laughing and joking and right back to her "normal". I took some really funny video clips of her dancing that I am putting to music. It will take me some time to edit it, but once I'm finished, I'll share it. It's SO hysterical!

Ok, off to the blue couch w/ my hubby now that the lil ones are IN BED! YAY. Under one roof!!!!!! 

Wednesday, March 28, 2012

Day + 9

Still no change! Ugh. Kayla and Denny will stay inpatient yet another night.  Every morning at either 4:00 or 5:00am, a sample of Kayla's blood is drawn and they look to see if either her ANC or her White Blood Cells go up. Her WBC's were up .1 and her ANC is still at 100.

Let me clarify. Kayla has not had a fever since they were admitted. Her cultures are showing no growth (and by now they would see something). Literally, they just need her ANC or WBC to go up... even a little and then they can go. Unfortunately this is not something you can check like a temperature check. It requires collecting blood, so obviously, they can't do it too often.

Denny and Kayla are going a bit stir crazy in there now. The odd thing is that while they are inpatient (even though she is "fine") they still require regular stool checks and urine cultures to be done. I guess they figure, while you are here, let's just keep checking her. Her urine still has to be charted (time and amount) every single time she goes. We don't do that at the apartment, but it's a regular requirement at all times while inpatient.  So, basically, it's a PAIN in the rear!!!
 Fishing with P/T

Kayla finally made Anthony's necklace. He has been begging her...

Today, Anthony and I are going to use this time wisely and get out and explore some areas near by. I hear from some of the other families here that the Botanical gardens are a fun place to visit. Just outside of Memphis is a town called Germantown. Apparently that is the nice area and where all the good stuff is to do! So, off to explore we will go. I am hoping to find a nice water park for this summer. Even though Kayla won't be able to enjoy it because of her Double Hickmann lines, aka her buddies, Anthony will need something to do when it gets hot out and she is inpatient or not wanting to leave the apartment. In California, we have water parks all over! It was 90 degrees out yesterday. So if it's this hot in March, I can anticipate a HOT summer here. I just can't wait to see those fireflies! That will be fun!

Speaking of bugs... a HUGE odd flying bug flew up and landed on our window last night. Anthony and I had fun looking at him up close. There are a lot of new bugs out here that we have never seen before.

Anthony is doing great! He is trying to read and tell time. Such a smart kid! We have been enjoying our time together. Lots of laughter and silliness. Lots of time just playing. Not too many people get this time with their children. I am looking at that as such a gift. The gift of time to spend one on one. You have to find the positives..... always! :)

Monday, March 26, 2012

Day + 7

It was a beautiful day out today! It has been just gorgeous out lately... it helps when keeping spirits high.

Kayla got her first blood transfusion early this morning at 12:45am. She woke up feeling a LOT better. Getting blood transfusions are very common around here and apparently make you feel so much better. We can only relate it to the vampire stories. They are drained and lethargic and after a good feeding they have super powers. I swear I have seen kids do a 360 after having a blood transfusion. So, that was a good thing. Also kayla was able to go to the bathroom after 6 days of nada. The meds we have asked for are starting to kick in. That is good! That is one thing that we can be happy about... one less "pain" to deal with. Even after the meds kicked in and a few trips to the bathroom had occurred, we had a good weigh-in! Kayla was up to 17.2 kgs. We were thrilled. Finally.. the few bits extra she is able to get down and the drive to survive is back! We are so so so happy!

Kayla's fever remained gone.  We are still waiting on cultures to come back. There is no update on when we should know. I would imagine tomorrow some time. They are waiting to see if anything is growing. That would mean that they need to keep Kayla inpatient longer to treat her for whatever it is. If the culture comes back negative and she is still fever free after 48 hours of admittance, she can be released again. It's a wait and see game. The good news is that she is feeling so much better. Her counts are still Zero. The general way this goes (for those of you like me who have never witnessed this) is the counts drop to zero quickly and then they rise slowly.

Kayla got her second mini dose of Vincristine today and her G-CSF push. She ate a decent lunch, finally, consisting of ravioli's and tomato soup. I am seeing a pattern here. She is liking tomato sauce. I also know what happens. She over-doses and will not like it by next week. Almost a guarantee! I hope not though! I'm always in search of a go-to food we know she will eat. I haven't found ONE yet.

Lipids will be added to her TPN diet in just a few moments. We look forward to seeing her cheeks, shoulders, back, stomach, hips, bottom and thighs start to fill out even a little!

Thanks for sharing in the love we have for our sweet girl.... Kayla Rose <3

Sunday, March 25, 2012

Day + 6 - and we have a fever!

This morning started off with a lethargic little girl who wasn't feeling well. Not that I really expected her necessarily to feel well, but I could tell this was different. It's a mommy's intuition to see that look in their eye and just know. So as I headed over to touch her head, I knew I would feel it. That slightly warmer feel compared to what I know so well. I grabbed the thermometer to just check. Sure enough, it was 100.4. F   I waited a few minutes and checked again. It was 100.3F  I knew it was a good thing that we were going into the hospital to get checked. Those thermometers are far superior to the cheap plastic kind we are sent home with.  Denny took a quick shower and we packed two over night bags. It's a lot like packing the car when you are expecting to have your baby. You need to have that hospital bag ready at all times. It's really not a bad idea to just have some clothes ready because you just never know now if a simple clinic visit could have you admitted.

12:30pm: We arrived at the hospital early for our 1:00 appointment. As soon as we checked in, we saw that our schedule had changed to 11:30... no one had called us to let us know. They are always supposed to call if there is a start time change. Oh well. There we were. Ready for what was to come. We knew her numbers were on the verge of needing platelets or at a minimum a blood transfusion. Would there be a temp? Would that be a new issue?

We headed into A/T to have Kayla weighed and her blood drawn. Her weight went up a few ounces! That was good! Her temperature was 99.4. Not high enough for admittance but close.  We walked over to the med room which is set up like an ER over the weekends. There is always a lot going on in there, even if the people behind the desk look like nothing is going on. It's bright. There are a lot of private rooms with doors that open and shut automatically with the push of a button. It's probably the worst  place to be when your counts are zero considering what comes in and out of there constantly. So, the mask stays on!

Kayla was hooked up in the med room and was half way through receiving her G-CSF shot when a nurse came in with the results from her blood work. She would be needing both platelets and a blood transfusion. Not out of the ordinary at all but time consuming. So, we decided that Anthony and I would go to the grocery store to get a few needed things while this took place. We knew it would be 3-4 hours. So off we went! About 20 minutes later, Denny let me know that they rechecked Kayla's temp and it had spiked up to 101.9. So, inpatient the went. LUCKILY they got a really cool room up on the 2nd floor. It is room #3! You can be in the fish bowl and see inside of their room! So I can walk in and Denny can see us! We can see Kayla and wave to her. What a great room!!!! So that is nice :)  We know that she will have to be fever free for at least 24 hours before she can be sent home. So my guess is they will be inpatient tonight and tomorrow night at least.  It's a good thing we packed a few things before heading in.

Anthony and I enjoyed a nice lunch out together (since we can't eat "out" with Kayla now). So, my treat to him. He loved it! When we got back to Target House we spent a good few hours playing with friends outside. The weather is SO gorgeous out! It's in the mid to high seventies and not humid. We are enjoying every bit of that while it lasts. At around 5pm, the cheer leaders started parading through towards Target House II. Apparently a few cheer teams throughout the US competed to raise funds. The top teams "grand prize" was to come here and be with the kids! They did a photo shoot and had a big taco dinner w/ the kids. I grabbed a to-go box to bring to Denny. I have to say, it was the most like California tacos I've seen since coming to Memphis yet! (he was VERY appreciative... and hungry!)

Anthony and I went inside to pack and grab a few more things (like Kayla's TPN that was in the fridge) to bring to the hospital.  We went in and met Denny in the fish bowl. It was great to spend a while with Kayla and make sure she was set up before I left. She was sipping Tomato soup through a straw (my trick!). I showed her how to use the fancy TV remote that looks more like a keyboard since she was really too sick during the last inpatient stay to learn it! Kayla loves Animal Planet. While I was there we took her temp again, which was 99.4 (after tylenol). Her platelet transfusion was just finishing. I made sure she knew she could use Dad's phone anytime to text me updates or to call me if she gets bored. This will be an easier inpatient stay. She will get used to this. We all will.... This is what I am talking about when I say the timing here is so totally unpredictable! You just never know...

Kayla was supposed to receive a little more of the chemo Vincristine today. They normally give it in a push and it takes no time at all. They do it on an outpatient basis on day + 6. Because of the fever they will most likely give it to her tomorrow. We have been told that the blood transfusion should be soon. It will happen while she sleeps. Hopefully she will wake up feeling SO much better.

Today in the med room, we met "the band man". He is a nurse who is pretty notorious around here for all of the bands he proudly carries around her every day! I was amazed at how many he had! What a SWEET man!!!! He is so happy to share his story about the bands and even happily posed for this picture. What a love. I told him I will have to ask for a Curing Kayla bracelet to be sent here for him to carry too!

Kayla's fever remains "normal". She will most likely get her blood transfusion in the morning because they like to monitor them while awake. She is still scheduled for her vincristine unless her blood work comes back with something crazy on it that delays it. I hope not! I am working on Kayla's Facebook Fan Page that I just created through her other FB page which I didn't monitor. It was started by a friend when the "stuff" hit the fan. I am so grateful for everyone keeping her page alive with love even without any tinkering from me! However, I want to be able to update it with quick little important tid-bits, events, pics and links for those of you who are on there. So, I am working on it.  I am techie... but FB can sometimes confuse me. Between the regular page, the groups and the fan page. I am trying to learn. Then they throw in this timeline curve which just means that the tutorials that were supposed to help are no longer working. I am tinkering. I will get it worked out! (thank you Tiff for helping me with this) If we can get Geoff to tinker too, it will be like the ultimate tri-fecta! If anyone knows any tips on the FB fan pages, please let me know!  Here is the link if you are on Facebook.  The details will always be here on the blog, but I can update crucial things there quicker.

Good night everyone! Please send special prayers that Kayla's fever remains low and her counts go up.up.up.up.up.... uuuuup!!!! 

Saturday, March 24, 2012

Day + 5

Today ended up just about as we expected it to. Kayla's counts dropped to Zero. The morning started with a lot of throw up triggered by the smell of coffee. She had Zofran, but still, it didn't really help much. Her hemoglobin and platelets both dropped, but not quite enough for a transfusion. Her weight dropped too. She is now 16.2 kg.  After the hospital appointments were over, we retired to our apartment to watch a few movies and just relax.

I offered Kayla some soup because she hadn't eaten one bite of anything all day and it was 4pm. She said she would eat some tomato soup. Hooray! Coming right up! She sipped it slowly but got about a half of a bowl down! Denny & I were so happy! We had a surprise quick visit with Angel because her mom was going to work and the babysitter was going to be a bit late. Kayla's spirits perked up a lot! It was so funny because Kayla asked Angel if she had eaten dinner yet. Angel said, "no". Kayla said, "WHAT??? Your mom dropped you off and you haven't eaten. You need to EAT Angel!" It was hysterical. It's the pot calling the kettle black! I quietly laughed and laughed...

The rash/hives on Kayla's stomach are still there but not bothering her quite as much anymore. The hospital gave us Eucerine cream to put on it and we have been giving her benadryl.

Tomorrow is a new day!

Friday, March 23, 2012

Day + 4

Today Kayla's counts as of this morning were at 100. So, just to clarify how fast they can drop, her ANC went from 3,700 to 100 in two days. I was surprised at that.  She is feeling really crummy poor girl. She walked slowly down the halls (but she walked!) as we went from clinic. A/T to OT and the Med Room. We had a nice long lunch break in between where we were able to get a few bites of soup down too. That was good!  Denny and I are pretty confident that starting early next week, Kayla will be started on Lipids in conjunction with her TPN. Lipids are how you really pack on the fat and calories so we have learned. We are all thinking that if we can get as much weight on her right now as possible, the better for her next round inpatient. Her weight has stayed stable at 16.4 kgs. (36.8lbs). She hasn't gained any, but she hasn't lost any either.

Today Kayla started her day with a tiny bit of energy.  I didn't take this picture, but Anthony is insisting I share his masterpiece with you all. (our budding camera man!) Next time, he says, he will hold still so it's not fuzzy like his baby puppy.

After lunch in an attempt to get fresh air and pass time before her next appointment, we went for a walk around the grounds. They have this beautiful garden that is dedicated and built in honor of the wonderful Danny Thomas. It is soooo pretty. Especially this time of year with the Cherry Trees in bloom. We sat out there for a while and tried to take our time. That is hard to do! Especially with a very active 4 yr old in tow. He doesn't sit still... EVER. ;) We still enjoyed every second of it.
Keeping my distance from her while her mask is off is the hardest thing for a mommy!
I hate the marks that the mask leaves behind..... mostly, I hate seeing my baby fighting to smile

Tonight, I can tell that Kayla has hit her bottom. She has little to zero energy.  She tells us that she is not feeling well at all. I asked her what she knows about Chemo. I was surprised that she didn't really understand what it was by now. I happily and sadly re-told her in a very simple way why she needs it and how Daddy and I, along with her doctors, think this will help her to keep the cancer from ever spreading to other places. We hope and have faith that this will win the battle in her body and keep it gone forever. After we had the talk about the cells in her body, the good and the bad and how the Chemo kills both and why, she nodded quietly. She nodded with her blankie up to her nose and mouth like she always does when she comforts herself. She understood why she needs to feel like this and how it's "normal" after getting Chemo. Most importantly, I reminded her it's only temporary. The doctors anticipate it will take about 10-14 days before her counts are back up. We will wait and try to relax into the process. Of course now, even though it's a weekend, this doesn't mean time off from the hospital. We still go... every day. They keep a close eye on Kayla and I am very thankful for that. If her platelets or hemoglobin drop too much (which are both on the verge now) Kayla will receive a blood and/or platelet transfusion.  Both are very common around here. Denny and I are looking into becoming donors ourselves. We realize now how important (and EASY) it is to do this. Of course we would love to give first to Kayla (if it's fresh enough) or give to the universal blood/platelet supply here. Denny and Kayla share the same blood type. After additional testing he would be able to donate directly to her. I do not have the same type, but could and would happily donate to the universal supply. We learned today that 100% of the donor's blood that is given at St. Jude is given to the patients directly from inside donors. However, this only covers 65% of the supply needed here.  The rest is collected from outside sources. We also were reminded that if Kayla spikes a fever of anything over 100.0 we will have to admit her back to inpatient. We are SO hopeful that we can keep her fever free. We have never washed our hands this much in our lives (and I am a hairstylist in water all day... Denny a plumber... both water centered jobs). Even Anthony is learning the constant routine of hand sanitizers and hand washes. He knows that they are so important and doesn't have a problem protecting his sissy.

This weekend will be filled with movies and lots of rest. Tonight She is fighting to eat even a few bites of dinner.  We are grateful at how hard she is fighting off how horrible she must be feeling. Tonight I hate the sadness, noises of pain and feeling crummy coming out of her room. Tonight it's hard for Kayla especially. Tonight we keep reminding each other that this is temporary and to remember the end goal.... being able to utter the words cancer free.

Thursday, March 22, 2012

Day +3

Lately there have been no dull days around here at St. Jude. Our days have been non-stop. We are so glad that the TPN is now in play. It sure takes a lot of my worry and frustration away. At a minimum I am certain that Kayla's body is being nourished.

Today Denny took the kids to the Hospital so I could do errands and clean the apartment and do laundry. Just because we have a child with cancer, chores and errands don't stop! And that is fine by me. I scrubbed the apartment down from top to bottom. It is nice that it's small in that way... it's easy to clean! Even though they have someone come in to clean the bathroom once a week, it's just not as thorough as I like to be. Plus the mop is dragged from room to room. How sanitary can that be? Yuck! So, I usually clean again after she is finished. I know... a bit of a germ-a-phobe.

Kayla has been VERY tired. She sleeps a lot. Today at the hospital, she slept for 3 hours. Two while they waited for an appointment and she slept during the hour she got her G-CSF injection. We were concerned over a new rash she had on her stomach this morning. It was terribly itchy and red. We were happy to know it is just a typical side effect and not to worry. Funny how that makes you happy. I went to pick them up and it was gorgeous outside. I talked everyone into going outside for a while to play. Kayla rested in a chair, but it felt so good for her (and all of us) to get fresh air.

 We had the whole place to ourselves today

Anthony's face here says it all. I need to get up there!
4.5 years old... and thriving. Just a goofy joy! We love our Anthony!!!
Doing anything we can to keep Kayla laughing and entertained

Kayla and her bumble bee filled with nutrients!

We headed back inside to watch a movie and relax. Before we knew it, it was 5:30 and time for our voice recorded interview. Yes, like I said... not stop action around here. We met down in the Amy Grant room. Again, we found the staff to be kind, caring and so grateful for our help. The project they are working on now is a commercial that will air on the local radio stations (sorry local friends... you won't hear this one). It will be snippets of some stories from families here set to music. It was fun, but much different from the TV commercial yesterday. For starters, we will request questions in advance so we can do an even better job for them. Of course we had an idea of what to expect, but there will be a lot less ummms while we search for the right words. I think they still loved what we did, but still! One thing that threw us was when we were asked if there was a story we wanted to share of something Kayla did that is really funny. Our minds went blank. The kid is hilarious. She does funny things all the time!!! But, we couldn't think of one. Other then that, we answered all of the questions and some! We are so happy to help such a wonderful organization.

Country Cares for St. Jude Kids® is one of the most successful radio fund-raising events in America. Since the program began in 1989, to date nearly 200 radio stations across the country have participated and raised $200 million in pledges for the children of St. Jude Children’s Research Hospital. Through the program, radio listeners are given the opportunity to call in and become Partners In Hope®, by making a donation to the hospital.
In addition to station and listener support, more than 100 country artists have given their names and time to Country Cares through recorded appeals, visits to St. Jude or call-ins to radiothons. These stars include Randy Owen, Brooks & Dunn, Garth Brooks, The Dixie Chicks, Tim McGraw, Faith Hill, Lonestar, Clint Black, Keith Urban and more.

Denny setting up Kayla's TPN and flushing her lines. This happens daily.
 Kayla slept through the whole thing
 Look at how much bigger AJ is than Kayla. He is 3 years and 3 months younger! Crazy!!

After her snooze, she woke just long enough to take a few bits of one pancake. It was the one thing she thought she might be able to eat for dinner. I will try ANYTHING and everything to get her to eat. You think of it, we've tried it. Trust me! And nothing is low-fat in this tiny fridge. 

We start at 9:30 tomorrow. Kayla is doing ok. She is getting through it. We all are. One round down, three to go!!!! Go Kayla GO!!!!!!!!  We love you all. Thank you so much for reading her story. It means so much to have all of the love and support behind us like we do. THANK YOU!