Tuesday, October 30, 2007

21 things about Kennedy

In honor of Down syndrome awareness month, several of my friends have been writing a list of 21 things about their child with Ds. SO here are 21 things about Kennedy... though I bet I could name 2,100!

1. Kennedy is our 3rd child and our 2nd daughter. I had her name picked out from the moment Kassidy was born.

2. Kennedy LOVES macaroni and cheese. She asks for it at least twice a day.

3. Kennedy knows over 100 signs in American Sign Language. Her favorite sign, which she uses frequently with us, is "Pay Attention!"

4. Kennedy's favorite show right now is "Wow Wow Wubzy". She loves to dance and sing with all the songs. Spongebob runs a close second.

5. Kennedy loves dogs (or "Dodies" as she calls them).

6. Kennedy's nickname is Boogie. This started when she was really tiny and had lots of respiratory issues and had lots of... well... boogers! LOL Daddy also calls her "Shorty" a lot.

7. Kennedy has had over 15 surgeries and has spent over 100 days admitted to the hospital. She has not had heart surgery though.

8. Kennedy loves music. She likes to sing, dance and especially bang on a drum. She has pretty good rhythm too!

9. Kennedy is very girly. She loves dresses that twirl and cute shoes. Whenever I show her a new outfit she says "Awww!"

10. Kennedy speaks over 100 words or phrases. Her favorite right now is "WHAT did you say?!" She also speaks fluent "Kenned-ese" which we're hoping she will teach us someday.

11. Kennedy can pretty much talk anyone into playing Groovy Girls with her... even macho men doctors!

12. Whenever someone has an "owie" (or a freckle for that matter), Kennedy will kiss it and make it all better.

13. Kennedy loves to watch Jay Leno... we're not sure why, but she claps and cheers for him every night.

14. Kennedy has the best laugh in the world.

15. Kennedy LOVES her siblings. She gets very excited when Kassidy and Kameron get home from school so she can play with them. She loves to give Keeghan kisses and bring him his toys.

16. Kennedy loves to talk on the phone.

17. Kennedy loves green tea, and is sad that she can't drink it anymore.

18. Kennedy takes medicine better than any child I've ever seen. She even gets excited about it.

19. Kennedy gives the best hugs, she pats you on the back and will kiss your forehead.

20. Kennedy loves to steal people's seats. You stand up, it's your loss.

21. Kennedy is amazing. She's the light of our lives and I can't imagine our world without her.

Sunday, October 28, 2007

One Week Home!

We did it! One week home! :o) YAY!!!! We even got brave and removed our hospital bracelets and unpacked some things. Kennedy continues to feel good and is having fun playing with Kassidy and Kameron. 

Right now we are getting ready to go to church and then Kass and Kam have practice for their Christmas play afterwards. They both have solos this year! This is the first time Frank, Kennedy, Keeghan and I have been in a couple months I think! One more step back to normal routine! 

Anyway, enough about that! I probably won't post again until the 1st when I'll have lots of halloween pictures to share :). Please keep all our friends in your prayers... Erica, Austin, Matthew, Nevaeh, Ryan, Luke, Julian, and our little friends with Ds and AML like Kennedy... Ashlyn, Rylee, Chelsea, Julia and David. So many right now! Links to all these kids pages and more are on Kennedy's Caringbridge Page. Please remember Kennedy in your prayers too that she stays in remission forever! 

OK I guess that's it! "See" you all in a few days! 

I am thankful it is staying somewhat warm so we won't freeze while we trick-or-treat!

Wednesday, October 24, 2007

This N That...

Hello from HOME still... can you believe it? I won't mention how long we've been home so I don't jinx us LOL. I hope you all enjoyed the pictures from the pumpkin patch. I do have to say, that slide was 51 feet... not 5 feet. Those of you who caught that were probably thinking, "OK a 5 foot slide - Big deal!" LOL 

Kennedy is doing well! She's been feeling good, pooping good (but not too much) and no fevers! We thought Keeghan might be getting sick a couple days ago, but he seems good now too. We've had a very low key week here which has been nice. It's been raining tons so we rescheduled Keeghan's appointment with the GI... they don't do much for him anyway. We just didn't want to drive to Nashville in the rain for nothing. 

We'd like to send some of our rain to California! Please pray for all our friends and family and everyone out there! Those nasty fires are really taking over! 

Pray: 
That God will intervene and change conditions so the fires will die 
For protection for those fighting the fires and those supporting them 
For the Santa Ana winds to subside 
For protection for endangered homes and properties 
For comfort for the thousands already evacuated 
For health and strength for evacuees who are elderly or have medical concerns 
For order, civility and kindness to govern those in evacuation centers 
For state and federal efforts to coordinate seamlessly 
and 
For rain!! Lots and lots of RAIN!!! 

I also need to ask for pray for our friend Julian. Julian has been battling a brain tumor called Medulloblastoma. His mom, Mimi just learned that Julian has relapsed. His doctors are planning a new course of action for Julian, but of course his family is worried. "Relapse" is the worst word in a cancer family's vocabulary. You can visit Julian's carepage. The name is JuliansWorld. Let him know you're praying! 

Please also remember to pray for our friends Erica and Luke as they continue to fight their own battles. 

Thanks!! 

I am thankful for days between updates... boring is GOOD!!

Sunday, October 21, 2007

The Pumpkin Patch

Today we had fun. This afternoon we went to the pumpkin patch. Kameron's class went to this farm on Thursday for a field trip and I actually got to go with him! We had so much fun that we thought we should come back with the whole family. We laughed and played and relaxed. We enjoyed being together as a family. We didn't think about hospitals or cancer or the messy house that is still waiting to be cleaned. We watched pig races and talked to the animals, rode on a train and went down a big slide. We left hot, tired and a little cranky, but we made memories that will hopefully last a lifetime. Today we had fun. This is how it's supposed to be.

Saturday, October 20, 2007

Update from home

Hey everyone, 

We are home. C-Diff came back negative so they have no reason for her diarrhea. It always bugs me when they don't have answers, I like to have a reason for everything. But... it's Kennedy, we don't have reasons for LOTS of her medical stuff. So we're on the countdown to one week at HOME! Once we hit a week we'll shoot for two! LOL She's feeling good tonight and was excited to get back home :o). 

OK I have an urgent prayer request for all you prayer warriors out there. Our little friend Luke had heart surgery not long ago and he is not doing well right now. His heart stopped today and he is on the ECMO machine. His mom, Darla, is of course really worried and is asking everyone to pray! Please visit Luke's Page and let them know you're praying! Tell them Kennedy sent you. This little guy has been through so much and he really needs a break! Thanks guys!! 

I am thankful that Kennedy is feeling good. Praying she stays that way!

Going home...

Well, we are getting out of here today. Our shortest visit yet! We're waiting for the results of her c-diff culture to come back still. They already started her on antibiotics for it but they need to know if we need to be sent home on it or not. She hasn't pooped since 10:00 last night and is still not eating much but she's drinking well... for now. 

As some of you know, Kennedy LOVES green tea. In fact, besides milk and water it's the only thing she will drink... and she drinks a lot of it. The doctor that came in today brought us a copy of a research study done by St. Judes showing that Green Tea in cancer patients (or those with low immune systems) is a huge no-no. It can cause a disease called Invasive Bacillus cereus Infection. They aren't going to test Kennedy for this (not sure why actually) but they strongly recommended cutting out the green tea, so we're going to have to find something else for her to drink! She hates juice. It's only green tea that is the problem so we're going to try other flavors of tea and see if she will drink those. 

Anyway, hopefully the results will be back soon and we can go home... our goal is one week home... can we do it??? We'll see!!! 

I am thankful for sleep...*yawn*

Friday, October 19, 2007

The good and the bad...

Good news first: Kennedy's bone marrow biopsy came back GREAT!!! She is still in remission and the doctors see no reason why she shouldn't stay that way forever. Praise God!!! Now we just have one scheduled monthly visit to the hemonc clinic for counts per month. If those look ok, we're good to go! 

Bad news: We made it home for 5 days and now we are back at Vandy :o(. Kennedy's sick again. She woke up at 2am with bad diarrhea and 17 dirty diapers later... here we are on 6B. She is pretty miserable, she tried to eat earlier but it made her gag so she's on fluids and pain medication for a crampy stomach. She has no fever and her counts are fine so they are suspecting c-diff or rotavirus. We'll find out tomorrow. They're going to go ahead and start her on Flagyl tonight for c-diff just in case. We'll be here at least until Sunday I'm guessing. 

We're going to miss our buddy walk tomorrow, which stinks! Any of you who were planning to walk with us, I'm SO sorry! We were so looking forward to it. We do have the Team Kennedy t-shirts and we'll get those to you all soon. 

I will update again when we know more. 

I am thankful for my mom who is always available to take over with Kassidy & Kameron.

Tuesday, October 16, 2007

Six months ago...

Exactly 6 months ago today I was sitting here checking my emails and talking to my friend Courtney when my phone rang and changed our lives forever. Dr. Shankar called us and told us that Kennedy had something called myelodysplastic syndrome and that she would need to start chemotherapy right away. That Friday we checked into Vanderbilt Children's Hospital where we were told she actually had Acute Myelogenous Leukemia and we began a whirlwind of spinal taps, bone marrow biopsies, chemotherapy, blood and platelet transfusions and the uncertainty of this horrible, ugly disease called cancer. 

Today we sit here on the other side of it. Today was our last bone marrow biopsy. By Thursday we will get the phone call that Kennedy is still in remission and that we only need to go into clinic once a month to check counts. (Six months ago I didn't know what counts were.) It's almost surreal. In 6 months we have made new friends and were devastated with the loss of others. We have laughed and we have cried. We have experienced a fear so deep that it shook us to the core and at the same time our faith in the Lord has grown beyond measure. I feel like this last 6 months has lasted a lifetime, yet I can't believe it's already over. I pray that it's over, I believe that it's over. But I will never forget. 

I will never forget the day that my friend Angela, Cody's mom, contacted me after learning of Kennedy's diagnosis and offered information, support and hope. We learned quickly that the parents who have "been there, done that" are invaluable resources. I will never forget when we saw Cody's hickman line in preparation for Kennedy getting hers. Little did we know that Kennedy would try to beat Cody's record of 5 lines. That same day Angela told us she hoped we would get a room on 6A. I know now she said that because the best nurses in the world work there. I will never forget when Angela posted that they were taking Cody home on hospice and then the phone call not long after telling us he had gone Home. The anger, sadness, and overwhelming grief of that day will stay with me forever. 

I will never forget Charlie. We met Charlie in clinic the same day Kennedy got her line. I barely remember that day, but I remember Charlie and his smile. Kim, his mom, was a wonderful resource for me as Charlie was battling AML too. Her outlook on life and cancer inspired me and I'm proud to call her my friend. Charlie... Charlie was my hero. One of my favorite sounds while inpatient was hearing Charlie racing down the hallway, Kim running behind him with his IV pole. He was fearless. A true rockstar, he showed Kennedy the ropes in music therapy. Kennedy watched him closely and learned SO much from him. Even when I knew he felt bad, even when he was hurting, Charlie kept going. He fought until the end, like any hero would. The day Charlie died was truly one of the saddest days in my life. He taught me so much and I will love him forever. 

All of the other amazing families on 6A... Logan, Matthew L., Max, Sam, Austin, Cody R., David, Ryan and Hezekiah... you guys rock! I am in constant awe of everything you have endured and you still manage to find your smile. I can only pray that my sons will be as loving and caring as you all are. I can't wait to see what you all do with your lives. 

Nevaeh, Mya, Matthew B., Braxton, Riley, Matthew T. & Jackson, my littlest heroes. I am excited to watch you all grow up into fabulous kids and amazing adults. I'm so glad we got to know you and that Kennedy was there to be your friend. You are all so strong and beautiful (and handsome). I love you all. 

Jillian, you just melt my heart. I love to read your writings and hear your thoughts about cancer. You have been dealt more than any little girl should have to endure and you are handling it all with more maturity than many adults that I know. 

Erica, I am at a loss for words. You have inspired me so much. Your faith in God is neverending, even in the hardest of times. I strive daily to have that faith. I feel so blessed to know you and call you a friend and I can't wait to see you marry Luke. The two of you together are a perfect picture of God's blessings. My heart just broke with the news of your relapse, but we are calling out our prayer warriors to pray on your behalf. We love you and we're praying for that miracle. Always. 

To our amazing doctors, nurses and care partners, Julie and Ashley with child life, Jenny our wonderful music therapist and Khette our favorite chaplain, we love you guys. It's a HARD job you have... I can't even imagine. But you all have been hand picked and are amazing. Thank you for the never-ending support and friendship. Thank you for taking the BEST care of Kennedy. Thank you for loving her, and us. No offense, but we hope we never see you inpatient again... though we'll gladly meet you for lunch or dinner! 

Six months that changed our lives... we'll cherish our friends and the lessons we learned... we'll never forget and pray we never have to remember. 

Until next time, 
Renee 

PS. Pray hard for Erica! Pray without ceasing!! Visit her page and let her know you're praying. We know prayer works, we've seen it happen! Pray Pray Pray!!! Erica's Page

Sunday, October 14, 2007

Back home...

Well, we're home! 
I'm a little afraid to unpack... after we're home for a week I will think about it! LOL 

Kennedy is feeling good, still not eating well though. They did a repeat xray of her belly today and said it looks MUCH better so all the sheets we've changed in the last two nights must have been worth it! LOL (Sorry again Heather! LOL) 

Please keep our friend Austin in your prayers! His blood work has been a little screwy the last few days which is always scary in the cancer world. He's going in tomorrow for a bone marrow biopsy. Pray it comes back completely clear!!! You can visit Austin and let him know you're praying by going to his page: Austin's Page. 

Anyway, I guess that's about it! Please pray that Kennedy starts eating and that we can stay home for longer than a week this time! 

Saturday, October 13, 2007

Back to Normal

WBC: 4.0 
Hgb: 10.9 
Plt: 390 
RBC: 3.80 
Nt: 2.24 

Well, all Kennedy's counts are back in normal range! YAY! The miralax kicked in last night and she had several really gross diapers that our wonderful nurse Heather got to help us clean up. (Sorry Heather! LOL) She hasn't had any more dirty diapers today but they gave her more miralax a couple hours ago so it's coming! 

Kennedy's been feeling pretty good today. She and Keeghan went on a wagon ride all over the hospital and then she went exploring just a little while ago. She's been sneezing and her eyes have been running like crazy today so I don't know if she has allergies or what, but it's irritating her! LOL 

Anyway, since her counts are back to normal the doctors decided to turn off her fluids and antibiotics today and just observe her. If everything is still ok tomorrow we may get to go home. Her nurse today asked if they would do another x-ray just to be sure she is cleaned out, but they didn't give her an answer, so we'll see! I just hope we get to STAY home this time! 

Thanks for praying for my grandma! She is back home now and hopefully will be feeling great again soon! 

I will update again tomorrow when we know what's happening. Please remember to pray for her biopsy on Tuesday!!

Friday, October 12, 2007

Septic...

 OK Kennedy's counts are seriously all over the place! 

Here are yesterday's vs. today: 

WBC: 16.2 (high) 4.2 (normal) 
Hgb: 11.3 (normal) 9.5 (low) 
Plt: 450 (high) 351 (normal) 
RBC: 3.90 (normal) 3.28 (low) 
Nt: 14.42 (high) 2.60 (normal) 
(I didn't post her neutrophils yesterday because I've never seen them that high and thought I was reading it wrong! LOL) 

OK and here are her blood sugars: 
10/11 (2:26PM) 35 (low) 
(8:05PM) 56 (low) (after sugar water) 
(11:45PM) 214 (high) (after extra sugar and a LOT of green tea) 

So Kennedy is septic. The good news is she looks MUCH better today and is interacting and watching cartoons. She also ate a fairly decent lunch. This means the antibiotics are working which is a VERY good thing. The acidosis they saw yesterday is completely gone, praise God! We'll be here for at least 2 more days and then it depends on her blood work. Please continue to pray that the antibiotics get rid of the sepsis... it scares me! Pray that we will be home with a HEALTHY Kennedy soon! My goal is to make it to at least ONE of Kass and Kam's soccer games this season! 

On another note, please pray for my grandma, she is pretty sick and my Aunt is worried she may not make it. Frank may be going home to be with the big kids later so my mom can go to Michigan to see my grandma. We're on a wait and see status right now. 

Thanks for praying!!! 

I am thankful that Kennedy's counts are getting back to normal... and praying they stay that way!!

Thursday, October 11, 2007

Crazy Night!

WOW what a crazy night! OK so Kennedy's counts are all over the place. Her blood sugar was really low earlier, like 35 I think. So they are pumping her full of sugar water. She finally woke up a bit and has been gulping down green tea which has lots of sugar so with the two combined her last reading was high. Her creatin (sp?) is off and she has acidosis (??) and they think she may have a cortizol deficiency. What does all this mean? They're not sure! 

They were talking earlier about doing a tox screen to make sure she didn't get ahold of something and ingest it, but after consulting with other doctors they don't think that is it, they really think it is infection somewhere. They are going to do some specific blood tests tonight and tomorrow and keep an eye on her sugars and everything else. For now she is on 2 antibiotics (vancomycin and cephapine) and she is sitting up on her own now which is a HUGE improvement from the rest of the day. She also pooped earlier so hopefully that helped too. 

They just came in and put in a new IV, her first one clotted already unfortunately, but she's a trooper and handled it well. Anyway, she's whining again, I just wanted to post an update before I forgot what happened... like it made any sense anyway, right?! 

Thank you for all the prayers! Hopefully they will figure out what is going on with her! 

I am thankful that Kennedy is more coherent... she was scaring me earlier!

Back on 6B...

WBC: 16.2 (high) 
RBC: 3.90 
Hgb: 11.3 
Plt: 450 (high) 

So I REALLY wasn't planning on updating so soon BUT here we sit on 6B at Vandy. Kennedy was feeling pretty good last night, she finally ate a good dinner so we were excited thinking maybe she was going to start eating well again, but she woke up crying this morning and just laid around for awhile and then ended up throwing up. Her temp was low grade, but she couldn't even lift her head off the pillow so I decided to call clinic. By the time we got here she was completely lethargic, still no fever, but she threw up in the car as well. They started her on fluids... she had to get stuck twice to get the IV in and it barely made her wimper. Then they sent her down for an xray of her belly which showed she is really constipated, which surprises me because her belly is soft and she just went night before last and it was soft and quite a bit. She threw up a bunch of bile while we were down in xray and they tried to get her to sit up but couldn't. She's been sleeping pretty much all day. 

SO we're up on 6B (in our jail cell... the room we were in isolation in for so long... but we're NOT on isolation now) and they are going to pump her full of fluids and miralax and clean her out and just watch her close. With her white count being a little high they want to make sure there is no infection anywhere. This of course puts a halt to our potty training efforts, but oh well! Anyway, hopefully we'll only be here a day or two. Please keep Kennedy in your prayers, she's feeling really yucky! 

I am thankful we are NOT on isolation!!

Wednesday, October 10, 2007

This N That...

Hey everyone!
Just a reminder if you are going to walk with us for the Buddy Walk on October 20th, we need to know! I also need to know what size tshirt you need. The bulk order price will be $9.00 per shirt. Here's the link with the shirts: Team Kennedy Shirts

Also, I wanted to let you all know I've started a blog. A few of my friends have been on my case about it for awhile so I decided to jump in. There is nothing about Kennedy's medical stuff on it, it will just be day to day life in the Garcia household (including potty training Kennedy which started today...). The medical stuff will still be posted here. Here is the link to the blog:Life With My Special Ks

Frank went back to work today and the kids and I just laid around all day. Kennedy had a GREAT time playing with Kassidy and Kameron while Keeghan rolled all over the floor trying to find things to shove into his mouth. He's going to be crawling before we know it!

Kennedy is doing ok. Still running that low grade fever and still not eating great, but she's in good spirits and seems to be feeling well. Remember to pray for good results for her bone marrow biopsy next week!!

Until next time,
Renee

I am thankful for "normal"... whatever that may be.


Potty Training Day 1 Part 2

So after staying dry for hours... yet NOT peeing on the potty I told Kennedy it was potty time! Time to sit on the potty!
"Oh... OK!" So she goes over to the potty chair, pulls down her pull up puts up the lid and sits down.
YES! I think.
Then she immediately stands up and announces "All done!" *sigh*
"But Kennedy, you didn't go potty!"
"ALL done!" she insists.
So I coax her back to the potty chair where she sits back down and I say, "Let's go potty!"
"Why?"
"Don't you have to go pee pee?"
*blank stare* Then she sits there for a minute and I get another "ALL done!"
OK OK so I get her up and...
YAY!!!! for pee!!!!
So we clap and we hug and we dance and she tries to pull up her pull up (THAT'S why they call them that). I seriously think she thinks I'm crazy. After a few more days of this, she will be right!

I DO IT!

So now that we're home... hopefully long term... I decided it's time to start potty training Kennedy. She has shown signs that she's ready so I thought, why not?

To tell the truth, potty training SCARES me. I feel that as a mom I am in control for the most part (or maybe I'm just fooling myself), but when it comes to potty training, I am so NOT in charge.

With Kassidy I begged and bribed, threatened and rewarded. Determined, I threw all the diapers out thinking that would somehow make her magically not need them anymore. Kassidy was very adamant that she did not WANT to use the potty chair, even though we both knew she was able.

Finally after months of fighting we were getting ready to go to Disneyland and as a last ditch effort I told Kassidy that if she wanted toys at Disneyland I could not afford to buy diapers anymore. Miraculously I never had to use another diaper on her again... not even at night. Fast forward a month to Disneyland, I gave Kassidy a $10 bill and told her to pick out a toy. She picked out a book that played songs and took it to the cashier where she loudly announced, "My mommy can't afford to buy me diapers anymore because I'm buying this book!" Nope, not in control at all.

I'm not exactly sure how Kameron came to be potty trained (though I'm pretty sure he is... yes... he is). I must have mentally blocked that time in our lives out. I may have a little post traumatic stress disorder from it. I'll deal with that someday.

As you can see, the thought of potty training Kennedy brings along with it some trepidation. Still, it has to be done eventually so here we start on this journey!

Potty training Kennedy (Day 1): I got Kennedy's new potty chair (pink of course) out of the box today and made a big deal about it. "Look at your cool new potty chair Kennedy! Do you want to go potty?" "Potty! YES! Potty!" So I took off her diaper and she sat and watched cartoons... sat and sat and sat until I heard "I DO IT!" And sure enough there was pee in the potty! YAY!!!! So I make a fool of myself and dance around and clap and praise her for going potty and she claps and laughs with me but gives me this look like I've completely lost my mind (yes, I know) and now she's in a pull up (a pink princess one, of course) sitting on my couch. So far so good.

If you're in the Middle Tennessee area and hear the frustrated cry or the crash of a potty chair going out the window, no worries, it's just me embracing the safety of the diaper once again. But maybe... just maybe... Kennedy will be my easy one. After all, it only took 20 minutes and she DO IT! *sigh* It's going to be a long week.

The "S" Word

A couple nights ago, Kameron, my mom and I were standing in my mom's dining room while we talked about Kameron's homework. He has a notebook and every week they focus on one letter and draw pictures for that letter. Kam has come up with some pretty creative pictures! So we were talking about S week and the pictures that he drew and he said something about the "S word". My mom and I were laughing at the thought of him drawing a picture of the "S word" when Kam announced "I know what the S word is and I'm going to say it just once so you know what it is too!" My mom and I stared at each other very nervously as Kameron repeated, "I'm going to say it just one time and then I'll never say it again!" OK so he knew he wasn't allowed to say it ever again so I said "OK Kam, what is it?" He got this little smile on his face like he knew he was about to get away with something great and he proudly exclaimed...
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
"STUPID!!!"

Tuesday, October 9, 2007

Did you miss me?!

Wow... no update for a few days! Strange huh?! Could it be that things are getting back to normal around here?! :o) 

Kennedy is doing ok, she is still battling a low grade fever that comes and goes but it has stayed under 100.5 so we're praying it won't go any higher! She is still not eating all that great either, but we'll keep working on it. 

She had an appointment at clinic today and they said they would keep an eye on her weight and food intake but they're not too worried as long as she keeps drinking, which she is. They didn't check her counts today since they would have to stick her and she has to go back next week for a bone marrow biopsy anyway. Please start praying now that her marrow comes back 100lear of cancer!! They will also give her a flu shot while she is asleep next week. 

We got to see several friends today! I will update about all our 6A friends below. After clinic we went to the mall and did a little shopping. Kass and Kam are on Fall Break so we just took them with us and made a family day out of it. We met Chad, Kim and Kaylond Porter for dinner. It was a lot of fun! On the way home Kassidy said "I think Kaylond is one of my new friends!" She makes friends everywhere she goes! :o) 

Erica is doing great and is getting close to her 100 day post transplant. 

David is going back inpatient due to an infection in his line. He will be getting it removed though, so that's good! 

We ran into Nevaeh's parents and she was in surgery getting a scope done to check for GVHD (Graft vs. Host Disease). 

Riley had this same scope done a few days ago and it showed mild GVHD which is good as long as it stays under control. 

Mya is doing ok, she is getting ready to get a g-tube placed and may be headed toward renal failure, so please keep her in your prayers! 

We got to see Cody at the mall tonight. He looks fabulous! Kennedy gave him a huge hug and got to meet his whole family. He's waiting on platelets to go up so he can go in for more chemo. 

Matthew Taylor just got his NG tube and is doing well with it. They are hoping to go home in a couple days. 

Matthew Litchfield is back inpatient for GVHD and once he gets out will have to stick close to the hospital instead of going home. Pray they find a good place to stay. 

Matthew Butterfield is doing great and will go back in for chemo next week. 

Sam is undergoing tests to make sure he is still clear of cancer, pray that he is! 

Logan is on his Make-A-Wish trip right now and hopefully having a FABULOUS time! 

Jillian is still inpatient for pneumonia but will hopefully be going home soon. 

Austin is doing great at home and enjoying his Fall break! 

Max as far as I know is doing great... we just missed him at clinic today. 

Ryan is doing well. His Disney trip as delayed due to counts, but hopefully they will go soon. Tomorrow is the one year anniversary of the day his tumor was removed. Happy Anniversary Ryan! 

Hezekiah just celebrated his 7th birthday! Happy birthday buddy! He goes back in for chemo on the 18th. (I'll leave a check for you guys in clinic next week!) 

Jackson is doing well and has avoided going inpatient even though he's been in the ER a few times lately. Pray he gets to stay home as long as possible! 

Kayla is in for scheduled chemo and is doing well!! 

Whew! OK I think that's it!! There are links to all these kids' pages on Kennedy's Caringbridge page. 
I have some pictures I need to get posted so maybe I will do that tomorrow. 

Until next time, 
Renee 

I am thankful for fast clinic visits and family time!

Saturday, October 6, 2007

Building my favorites

So being new to the blogging world, I'm not sure about the blogging etiquette. Am I supposed to email people before I add their blog to my list, or do I just add them? And if I just add them, do I let them know I've added them and ask them to add me too? It's all so complicated! I can't handle the stress! AHHH!!! LOL

So I've chosen a few bloggers who I don't think will care that I've added them and put their links on my favorite blogs list. If you find your name on here and do not want to be on my list, please let me know. If your name is not here and you DO want to be on my list please let me know. If I'm breaking all the sacred rules of blogging on my second day... don't tell me. HA! Just kidding! Let me know that too.

Consider this entry as permission to add my blog to your list if you'd like. You don't have to ask... I have no manners, so why would I expect them from anyone else?! :o)

More coherent babble tomorrow, promise!

Hi from Home!!

Hello from home! 

Kennedy's neutrophils were up today so we left Vandy around 11:00. It's good to be home! We have almost everything unpacked and put away but we still have 6 months of STUFF everywhere that needs to be organized (or thrown away). My goal is to have this done by the end of October. We'll see. LOL 

Kennedy is feeling good and finally ate a good meal last night for dinner. She did pretty good for lunch today as well so hopefully she will keep eating well now. 

Kenn has been having fun exploring the house and seeing what new things she can get into. All of the sudden every cupboard must be opened and explored! She keeps bringing us cans of soup from the pantry. Silly kid! 

Anyway, I am going to go eat dinner and TRY to go to bed early... Kennedy's still on hospital time, so we'll see how that goes. 

I am thankful for home and no more fevers!

Why blog?

Well, why not? Everyone's doing it!
I must admit I'm a little slow to join the "in crowd", I always have been. It took me forever to finally create a myspace page, just ask my husband. He created his LONG before me and kept telling me I'd really like it. Did I listen? No. The first thing you should know about me is I can be a little stubborn. This isn't always a bad thing though!

So back to what I was saying, here I am just starting a blog months and months after most of my friends are well into theirs. I'm not sure why I kept dragging my feet... it could be that I don't have enough time, or it could be that stubborn thing. Either way, here I am putting my life out there for you all to read... laugh at... cry at... or just roll your eyes at the sheer drama of it all. Finally a diary my mom won't have to dig through my room to find! HA!

I don't know how often I'll update this thing, once I decide I like it I'll probably be here more than you'd like me to. For now I'm going to bed.

Signing off,
Renee

Friday, October 5, 2007

Tomorrow...

October 05, 2007 at 06:03 PM CDT

WBC: 2.7 
Hgb: 10.2 
Plt: 368 
RBC: 3.58 
Nt: .35 

Kennedy's neutrophils are finally going up! YAY! Dr. Collier and I agreed it's probably safest to wait one more day before going home. We don't want to have to come back with a fever in 2 days again. So as long as her neutrophils are even higher tomorrow we will be out of here. Kennedy is feeling good, but she is still not eating much. They turned off her fluids today to see if that would spark an appetite but it didn't work. She's drinking tons so that's good! Hopefully she'll start eating again soon. 

Here is the link for the Team Kennedy T-shirts and pins. If you are coming to the walk, please email me and let me know what size(s) you would like and I'll order them. We get a discount for bulk orders. Team Kennedy 2007 

Anyway, I guess that is it! I will update from home tomorrow! 

I am thankful we are going home tomorrow... hopefully for GOOD this time!

Thursday, October 4, 2007

Getting Better...

WBC: 2.4 
Hgb: 10.3 
Plt: 309 
RBC: 3.67 
Nt: .12 

Kennedy had a pretty good day today, no fevers! However, her neutrophils are still hanging out and not going up like they would like. They're still saying we could possibly go home tomorrow, but I'm not holding my breath. I hope they don't send us home if her neutrophils are still low, we'll just end up back here in a couple days with fever again. Kennedy is still not eating very well either. Even if we combined all the food she's eaten over the last 2 days we wouldn't have one full meal. Not too sure what that is all about! 

She had to get a new IV last night, the one in her right arm stopped working so now it's in her left hand. Then when they went to draw labs this morning they couldn't get a blood return SO they had to stick her again. Can you believe she slept right through that though? Amazing! They're going to have to do it again tomorrow so pray she sleeps through again! Makes things much easier for sure. 

Keeghan and I headed back to Clarksville this afternoon to go to Kassidy and Kameron's parent/teacher conferences. Both teachers said the kids are doing just great!!! Kassidy is making all As and Kameron has mastered all the skills they have worked on. (They don't give grades in Kindergarten.) Kam's teacher said she is having him help her with spelling and reading stuff since he's so good with that stuff. Now we just need to work on the fact that he is a VERY sore loser! PE has not been fun the last couple days! Kassidy won a writing contest for the whole 2nd grade and her story is posted on the wall in one of the hallways. Did I remember to go read it? NO!!! UGH But I can't wait to see it when it comes home! I'm so proud of both of them! They work hard and they love to learn! After the meetings we went out to dinner and now I'm back at Vandy for the night. 

About the buddy walk, for those of you who want to walk with us, the walk is at 10am on October 20th at Centennial Park in Nashville. It's free to walk but we need to pre-register so we can get Buddy Walk T-shirts, so please let us know if you plan to come. It's a very slow paced 1 mile walk, and all kids and strollers are welcome! Bring a picnic lunch for afterwards. There is music, games and lots of fun!!! I will get the Team Kennedy shirts posted tomorrow, promise!!! 

I guess that's it for now! I'll update again tomorrow as soon as I know if we are going home or not. 

I am thankful that Kass and Kam are doing well in school! They are amazing!!

Wednesday, October 3, 2007

Counts...

10/2/07 
WBC: 1.4 
Hgb: 11.2 
Plt: 321 
RBC: 3.81 
Nt: .13 

10/3/07 
WBC: 1.6 
Hgb: 9.2 
Plt: 312 
RBC: 3.24 
Nt: .12 

Well there's something I didn't think I'd be posting for awhile! But there are her counts. Kennedy is still sleeping, but her temp has been down all night. This morning they told me they were going to still do the CT to be safe, in fact, I was actually just getting on here to post that they were going to do it between 3:00 - 4:00 PM. This would have been hard since she can't eat until after as they'd have to sedate her. However, one of her nurses just walked in and said they canceled the CT. I guess since the antibiotics are keeping her fever away and because when they assessed her this morning her belly didn't seem to be hurting her, they are going to wait. If need be they will do it tomorrow. 

Thanks to everyone who has donated to Team Kennedy!!! :) You guys rock! I wish you all could be here to walk with us, but I know you are here in spirit! I am still working on the Team Kennedy shirts and will let you know when those are available. 

Anyway, I'll update again when I know more. 

Until next time, 
Renee