29 Oct 2008, 9:25pm EST
Just wanted to ask you all to pray for my great Aunt Mary. She has had 2 surgeries in 2 days. The first surgery was for her heart, and the second one was to remove some blood clots that formed after her triple bypass. She is on a ventilator, and needs our prayers.
Kara is doing good - she's eating right now - we're getting things wrapped up for bed.
Thanks for praying & good night,
Megan

28 Oct 2008, 3:42pm EST
Brrrrr....it sure is cold down here!!!! We ran to Home Depot today, and Tony and I both noticed a couple, (notice I said COUPLE) of snow flurries.....if we blinked for too long, we would've missed them! We went out for lunch, and ran in Tractor Supply, and came back home. I really need to run to the grocery; but I think I'll put it off at least for a few more hours, unless it can wait until tomorrow, or the next day....... :)

Today, Kara's been kissing on Lauren...wondering what has triggered that ?! I know it can't be the chemo that she started yesterday! It usually makes her angry, moody, or irritable...which some of that came out of her today, too! Not a lot to report.....Tonight is parent/teacher conferences for Erica & Brent. We'll probably see if Butch & Vonda can watch the kids while we go for that. Well, I will try and update again tomorrow....Hope you all enjoy your night!

Oh, I can't remember if I mentioned it or not the other day, but I called St. Jude and Kara's still not in the schedule yet for her scans and testing. I will let you know when I find out for sure....keep the prayers going up for everyone battling along with the praises for all of God's many blessings!

God bless,
Megan

27 Oct 2008, 9:37pm EST
Saturday, we all went to the fall festival at church. Bro. Ingram took all the kids for a hayride. I don't think Brent even rode on it, he was too busy playing football. That's one thing the boys at church love to do....FOOTBALL! He didn't even eat when the food was ready, and you know that's saying a lot for Brent to pass up food when it's ready! They had fun playing even though it was chilly. We left early, though, so we didn't play in all the fun and games. I'm sure they had a lot of fun!

Yesterday a.m. and night we went to church, but during the day we were lazyheads, and hung out here at home. Today, we've been busy here....it was laundry and cleaning day - that's always fun, fun, fun....the kids have been busy with schoolwork, and the twins have been busy playing together. I mentioned to Tony last night how good Kara's been feeling the last couple of days. She has been running, and playing, and laughing, and eating. Last night I asked her to hop on 1 leg. She had a little trouble balancing at first, and the leg she was holding up seemed to be a little heavy for her, but she did it. She was trying hard. She didn't just do it once, either. Of course, when comparing her & Lauren, Lauren seemed to breeze through it, but I was happy for Kara that she didn't just try it, and stop. She did it again, and again. They were hitting a soft foam ball with a foam bat, and would run through the kitchen and living room, like they were running bases. Lori, I hope you're reading this !!!! (We can count that as our Physical therapy session for the day!)

Well, I better run, Erica's needing my help. Tony told them that it might snow tonight, and Erica's already mentioned about school being cancelled tomorrow. :) I think she's dreaming big! I guess living down here around the mountains does have it's benefits - when we were growing up in Indiana, we would get a lot of snow in the wintertime, and miss school, but wouldn't get to miss near as easily as our kids do here! I guess it's time for my story to them, "When I was little I had to walk 5 miles through snow, rain, ice, barefooted just to get to school......" :) Well, I hope you all are enjoying yourselves, and staying warm.....

Good night...God bless,
Megan

25 Oct 2008, 10:20pm EST
Hello All! Never heard anymore from the Hospital about Kara's cultures - so this is awesome news! The time limit is up for something to be growing....YAY!

Nothing major to tell....here's a run-down of our day:
Tony & I took care of our voting privileges....early! (If you can go early, I recommend it - we were in and out real quick!)
After that, we took Kara to the clinic to get her flu shot. Well, they told us that the immediate family could get one, so that meant everyone there might as well get it over with, too. When one member suffers, we all suffer! :) Kara went first; she was crying in fear & dread, but it didn't last long. Lauren was a different story. She saw what they did to Kara, so Tony & I both tried picking her up out of the corner of the room while she was crying very loudly and resisting for everything she had in her. Tony got her & I held her, and another nurse held her arm, and thankfully it was over quickly! Afterwards they both got to pick out a stash of stickers, and then watch me & Tony get ours. They enjoyed that a lot better! Lauren wanted to hold my hand since I went after her. On the way home, Tony must've wanted to get something started cause he said, "Mine hurt the worst!" I told him that they put the shot in the muscle. His reply, "I have a lot of muscle." That sounds like Tony, huh? :)

Well, later on, Tony stayed at home with Brent, Lauren & Kara, fixed homemade pizza and bathed the girls, while Erica & I ran to the grocery. I used to like going....anymore it seems like a chore....especially when it's cold, windy, and rainy! Well, tomorrow is the Fall Festival at church, so we picked up some things for that....the kids are really looking forward to it! Well, I better run, I'm tired tonight!

Take care & God bless,
Megan

22 Oct 2008, 4:48pm EST
Hello again - all is well here. Kara and Lauren have been playing with their My Little Ponies and Littlest Pet Shop toys some this a.m., and right now they are playing dress-up in pink tutus and sharing a pirate patch, and hat. Kara just came in and asked me if I could fix her skirt, because it was up around her neck. They are funny (sometimes) :)

Still no word about anything growing on Kara's follow-up blood cultures from Monday. One more day to go for the final results! The main reason I wanted to do an update today, was to give you all some information in case you weren't already aware of this.
Hopefully, you'll find it helpful, and useful.

First, I've been wanting to share the symptoms Kara had in May/June 2007 for a while. These were the symptoms we were seeing in her, before her diagnosis of Stage IV Neuroblastoma. There may be different symptoms in different types of cancers, but with Neuroblastoma, usually children are diagnosed in a late stage. That's just the way it is, unfortunately. Some parents notice a lump, or mass in their child's abdomen area. We did not. These are the symptoms we dealt with:

1. Limping
2. Low-grade fever (The night we took her to Children's E.R., she had recently finished a round of antibiotics for an upper respiratory infection, and her fever returned at 99.6*)
3. Cold/allergy symptoms - diagnosed with an upper respiratory infection
4. Achiness ("My belly, my arm, my leg hurts") A nurse practitioner explained to me this was probably related to the infection/cold -Which did make sense.
5. Irritability (whiny and fussy)
6. Very pale - almost grayish/orangish color - I even questioned the E.R. Dr. if she looked jaundice - I knew her color was "off" somehow (Found out in E.R. after bloodwork was completed that she was VERY anemic)
7. Very tired - The night we took her to the E.R., earlier that evening, she woke up from a nap, and within a half an hour she was could have fallen back to sleep - she was that tired. She was content to sit in my lap in a chair.
8. Quiet - She wasn't her usual self

None of these are very dramatic, other than the limping, but even that symptom I could've explained away that "maybe she pulled a muscle while playing." No one ever thinks cancer will hit home to them, and I hope you aren't faced with it. Some of you have already had to deal with life affected by cancer. So, when you think something isn't "just right" it would be better to be over-cautious and find out that "everything is fine", than the alternative. I'm not saying to run your child to the Dr. over every sneeze, or sniffle. But, as a parent, you can tell when something just isn't right. Be an advocate for your child. We were fortunate in having Dr.'s who also found that something wasn't right. But, I have been aware that this isn't always the case. If need be, get a 2nd opinion. We were told from a Physician that Childhood cancer is rare. Maybe there are more cases today, than in previous years, though. It could be possible that it is on the rise. Our first day at St. Jude, a lady was registering us, and she told us that she had worked there around 20 years or so, and she said there is a war going on overseas, but we needed a war right there. She was telling us how many more kids are going to St. Jude than there used to be. (I am in no way down-playing the meaning of our hero soldiers fighting terrorism and defending freedom.) I believe they deserve honor and respect - they sure are brave! I was just wanting to relay the words she used to tell us how it this disease seems to be on the rise.

Kara's Oncologist couldn't tell us how long Kara had her cancer. I don't know what caused it. Being a research hospital, on our first visit, Tony and I were questioned about our places of work, if we lived near an interstate, even if I took my prenatal vitamins....they were gathering information. Hopefully, one day they will learn more on how to more effectively treat each type of cancer, even better yet, an all out cure for all types of cancer. I do know that a year after Kara's diagnosis, we were meeting with Kara's Radiologist. I remember Mom & I asking him about 'Goji Juice.' (You'll have to research this on your own, or ask a Physician about it. I am not necessarily promoting it, we've not tried it on Kara.) It's just that someone had spoken highly of it to Mom, and we wanted to get a Dr.'s opinion. He told us that cancer is caused by 'toxins', and he didn't recommend Kara taking it during treatment. But, he had no problem with her trying it after she was off of treatment. He said for us to wait until after her oral chemo is finished. (The reason to wait until she was through with all treatment is because we wouldn't want to use something while she had cancer that could also benefit the cancer cells.)

The reason I brought this up, is because if a type of 'antioxidant' can help prevent some cancers, then it's worth checking into. I would definitely recommend you asking a Dr. about this first, though...it is worth checking into, even if they tell you, "I don't believe that helps in preventing cancer," it is worth the effort. Like the saying goes, "You never know until you ask." So, I just wanted to throw this tidbit in today, hopefully it is helpful. I don't want you to go out and buy it, and try it without getting a Dr.'s opinion, because everybody is different, and has different situations. But, it seems we are hearing so much these days about cancer.....I hope this finds you all doing great. Speaking of, if your fingers get happy, let them drop us a line in the guestbook. We'd love to hear from you!

God Bless,
Megan

21 Oct 2008, 5:06pm EST
Hey, I got word from Children's and St. Jude. So far, both of the blood cultures drawn from both lines coming out of her central line are showing "No growth". They will flag the samples every 24 hours, up until morning or early afternoon on Thursday. She isn't running any fevers, so we expect the cultures to stay negative. (Pray that she doesn't get another one of these "blood bugs" again!)

As far as the flu shot goes, she can go to the clinic in Knoxville any day, except Thursdays. No appointments are needed. That is easy to work with! I'm planning going back this week to get that taken care of.

Nothing major to report. Kara's doing good. We are staying busy with everyday stuff. I thought I'd share one thing Brent said this afternoon after school that I thought was funny. Erica mentioned a couple of their friends weren't at school today. Brent chirped in and said, "Maybe they caught the Weasles!" He was being serious, too, believe it or not. :) Hope you all have a great night. I'm hoping to get the kids in bed earlier tonight. Last night ended up being a late one for them, and Erica's got a lot of work from school to do tonight, so I better run....

Megan

20 Oct 2008, 3:05pm EST
Hello! We made it to KY, and back home - safe and sound. We ended up leaving later than 5 or 6 a.m., and arrived in time for lunch. Can you believe Mamaw is 91 years old, and is still cooking and going like she does? We didn't (thankfully!) have any complications this weekend with Kara's health. It was a nice break this weekend, that we enjoyed. Saturday, the guys raked leaves, and Brent, Lauren & Kara played in them. I was trying to remember if this was the first time the girls have ever played in leaves ?!?!?!? They may have played in them one other time. Sometimes it's hard to remember all that I'd like to! I don't know if it's the last year, or just age! We were able to go to church with Tony's Mamaw Sat. night. Lauren & Kara must have been tuckered out, 'cause they both fell alseep during church. We did enjoy the service, and were able to see those who had been lifting Kara and our family up in prayer over the past months. We are so thankful for ALL the prayers, and support we have received from EVERYONE through all of this! I'd like to say THANK YOU again to EVERYBODY!
After church, we picked up Pizza Hut to eat, and took it back to Mamaw's house and visited with Aunt Bonnie & Uncle Darrell Ragan. We traveled home Sunday. Kara fell asleep not too far from home, and slept until Erica woke her up at 6 p.m.! I think all the kids enjoyed going back to Mamaw's house. Brent even kissed & hugged Mamaw twice before we pulled out.

On a different note, I took Kara back to Children's this a.m. She had a follow-up blood culture to make sure that the infection in her blood is cleared. We are expecting it to be, since she hasn't ran a fever. I will call tomorrow to find out for sure. Her bloodcounts and chemistries were good. Her triglycerides were higher than normal, but Dr. Malik said it is expected from the oral chemo she was on. He didn't think that her level would cause St. Jude to withhold the next round of chemo, which will be Rd. #5 and starts on Monday, Oct. 27th. Her platelets and hemoglobin were normal, and her white blood cells were lower than the "normal" range, but still good. I called St. Jude about Kara having a flu shot this year. I was told she needed one at 6 mos. post-transplant. I wasn't aware of that one! (That was Oct. 7th, but she can't get one while she's on the i.v. antibiotics for the line infection.) So, after we get a negative culture from her blood, I will call and schedule her flu shot. Erica, Brent, and Lauren are scheduled to have one in early November, and I'll have to call and make Tony & me an appointment. The kids aren't looking forward to them, but I know it's necessary. I'll be glad when Kara's immunizations are back up-to-date, and over with, too. To me, the sooner, the better!

Well, I will go for now, it's almost time for Erica & Brent to come home from school, and I'm behind on my work!

I'll try to update again before long. Please keep remembering Brooklyn in your prayers! Please keep lifting her family up in prayer, too. She was going to the clinic today.

You know how I talked about me forgetting things, well, I did it again, and don't ask me how I forgot this one! I was so thrilled to find out today that Kara has gained over 2 lbs. in a month's time! I am so HAPPY! Keep praying that she just keeps right on eating through the next rounds of Accutane! :)

God Bless,
Megan

16 Oct 2008, 11:06pm EST
Just checking back in with everyone.....Kara seems to be doing okay. She looked a little pale earlier, but she is playing. She hasn't ate the best today, but she has enjoyed her fair share of chocolate......

Mom & I are planning on getting the twins some winter coats tomorrow. Tony said this weekend it's supposed to get cool at night - I'm not saying you'll need a coat this weekend, but Mom's off of work tomorrow, and Tony's off, so it will work out good for us to go tomorrow. I think Brent is planning on staying with Tony while we go, maybe even Erica, too. She may change her mind by in the morning, though.

I asked Tony if we were leaving for KY on Friday or Saturday, and he said probably Saturday, around 5 or 6 a.m...... :) If you know me, I'm no early bird! He said the kids could go in their p.j.'s. I know I told you he loves his Mamaw's cook'in - I guess he wants to get there in time to eat it! So, I'll be getting things together tomorrow night. We'll stay overnight, and come back home Sunday. It's about 2 1/2 - 3 hours away from here. I asked him what we'd do if Kara runs a fever, and he said we'd come back to Knoxville and take her to Children's. It's only a couple of hours away from his Mamaw's house. We are looking forward to going there again, and hope we don't have any complications with Kara's health. Both of our parents will be going, too.

Well, I may try and update again before we head out of town. If I don't, I'll update when we get back. Please keep praying for Brooklyn Durham, and have a great night!

God bless,
Megan

14 Oct 2008, 11:25pm EST
Kara is getting ready to have her last dose of i.v. antibiotics 2-nite....I sure do hope on Monday that the blood cultures are still negative....I don't look for them to be positive. Please pray that she never has one of these infections again! THANK YOU !!

Tonight after supper, Darius & Julie Gregory came over for a little while, and we took a walk to the edge of the woods with them. The mosquitos were biting Julie, and the weeds were making the twins itch. It wasn't long, and we were headed back to the house. A little while later, we headed over to Mom's house to visit, and she had the neatest contraption. I had never seen one before. It is a battery-operated fly-swat, made to look like a tennis racket, but it acts like those black outside bug lights that you hang up in the summertime. Well, Brent had to try it out, and try it out, and try it out. We were on our front porch with the porch light on, and Brent was zapping the bugs, then Kara had to try it, then Lauren, and finally Erica. (If anybody needs any ideas for Christmas this year, there ya go! You can find them at Wal-Mart, near the bug spray. Only bad thing is, you'll have to wait until spring to use it.) If you're worried it will hurt them, Mom's already tried that out by accident, and it doesn't hurt, it just might startle you with the buzzing!

Well, I need to go. The kids are busy playing, and I need to get them un-wound, and headed to bed...

Please keep remembering Brooklyn, too! I know their family appreciates it!

God bless, and have a great Wednesday!
Megan

13 Oct 2008, 9:57pm EST
Today has been another good day. We picked the kids up from school, and headed to some shoe stores to try and find the kids some winter shoes. We scored for the twins. 2 down, 2 more to go.... :)

Tonight we are keeping their cousins, Brooklyn & Skylar, overnight. The kids have been playing around some. The boys have played football, and the girls have played house/school, but right now it's time for them all to crash and hit the sack for the night....Lauren just asked me, "Do you know we're having a sleepover?" She told Tony, "This is called 'a sleepover'." (Can you tell it's been a while since we've had one?) Kara just asked me, "Mommy, are we having a sleepover - for real ?" They sure are happy.

There's been a change in plans, we are heading to KY this weekend to visit Tony's family. Mamaw Gert has made homemade chocolate gravy.....Tony loves his Mamaw's home-made bisquits and her chocolate gravy....she makes a full meal at breakfast time. She gets up bright and early, and has porkchops, gravy, bisquits, chocolate gravy, eggs, & bacon for us all to eat. Erica was talking to me this evening, "You remember how she makes pumpkin pie for me and daddy?" You can tell they love her cook'in! :)

Well, I better go...I guess I'm just rattling tonight. Take care, keep remembering all the children! I'd like to ask you all to remember our neighbor in your prayers. She is battling cancer, I believe for a 2nd time. Her name is Hazel. She asked for me to pray for her, and I'd like you all to remember her, too. I know she prays for Kara, and I'd like us to stand in the gap for her, too!

Good night & God bless,
Megan

12 Oct 2008, 11:25pm EST
Not a whole lot of anything interesting to report tonight...just checking in. We had a pretty quiet day today. Brent got sick last night around Midnight, thinking that it might have been something he ate or drank, 'cause he's been better today. Kara has officially finished Round #4 of Accutane. 2 more rounds left.....then it will be scan time again, and even more thorough testing. If I've figured right, it should be in about 10 more weeks. Somewhere around Christmas....

The kids only have school 2 days this week, and then they get their fall break. We had originally talked about trying to go to KY to visit Tony's Mamaw Gert and family this coming weekend, but Kara's follow-up appt. is Monday, 20th, and we don't want to be too far from home just yet. We are still planning on getting that way to visit.

Well, take care & I hope you all have a great day!

God bless,
Megan

11 Oct 2008, 11:47am EST
Another good night.....last night the kids played Red light, Green light, and Mother May I with Mamaw & Papaw Lee, and we all had quite a few laughs. Kara won the first round, and so it was her turn to be in command, as the "Mother". Everything was do 5 of this, and 5 of that....She told somebody, I think it was Erica, to do 5 elephant hops.... :) Last night, Erica and I worked on Christmas cards....I know, I know, it's only October, but last year I didn't send any out, and believe me, I definitely plan on it this year!!!! Hey, I figured if I start now, I should get them done in time!

Today, the girls are planning on making a checkerboard cake, and who knows what else they'll come up with to do to keep them occupied. They're still interested in the stethescope, and have played Dr. already this morning.

Kara is eating fine. Yesterday her belly rumbled, and she said, "I have an appetite!" I'm hoping it continues! 1 1/2 more days on the Accutane...almost there!

Keep praying for her & Brooklyn, Sydney, Mary Kate, & Caleb. There's a fellow Neuroblastoma patient who's past stable scans just showed 2 new spots on the MIBG scan. Please remember them in your prayers, also. His name is Sam Farris.

Tomorrow is Brooklyn's 12th Birthday....maybe you could stop by her website and wish her the best ever!

Thank you for checking in and for the prayers....
God bless,
Megan

10 Oct 2008, 11:25am EST
Prayers were answered.....by midnight Wednesday, Kara's head was damp with sweat. When her temp was up, Tony thought we all should go pray for her...it wasn't too long after we did that her temp kept falling. Tony was worried with another elevated temp, and I was discouraged. It was like, "Here we go again...I'm ready for a break!" But God touched her again, and all that is better. Her temp hasn't been up since. Praise the Lord! We had been noticing her eyes swelling, but they look better than the other day. Her right one is a little pink underneath still, but not like it was. Also, the skin irritation above her central line is looking better, too. It is healing up. Never heard anything about Saturday's blood cultures, and the five days are up now....that's good, and she only has 2 1/2 days left on Accutane. I am counting down!!

She had a good day yesterday. Last night, Dad & Tony were putting up shelving above my washer and dryer so we could have more storage space.....(I had been using our bathroom shower for a "stash area.") We were cleaning the house the other night, and Tony said, "What's all that in our shower? If all that wasn't in there, we could use it!" :) I told him it was the St. Jude keepsakes. He said the next day he would make me some shelving in our laundry room....What a difference it has made! It's like we've added another closet to our house! When we were moving the bags, we took a peek inside one of the bags. It had the self-portrait cartoon drawings that someone drew for Lauren, Brent, & Erica on Sibling Star Day over a year ago. They had forgotten all about them. Now they want them framed and hung in their rooms. They found a craft that they did when they visited once, and we also ran across Kara's stethescope and blood pressure cuff that we kept from when they diagnosed her at Children's Hospital. The kids enjoyed playing with that and finding forgotten keepsakes. You may think I'm crazy, but I even saved Kara's hair that she lost from the chemo. St. Jude gave her a box to decorate and I have it saved in there. Tony seems to think that it's gross that I kept it. Hopefully, someday she'll want it :).

Right now, Lauren & Kara are all dressed, have caps on, with fake pony tails sticking out the back, and have on their robes, and Kara has a backpack on, too. They are all ready, I guess! Well, I better run....I'm not moving too fast today...I have plenty I could be doing!

Thank you for the prayers, and checking in, Megan

8 Oct 2008, 10:32pm EST
I'm asking for your prayers tonight....Kara's temp. is elevated again....99.4*/99.6* orally. One more degree, and we have to make a phone call to Dr. Malik, her Oncologist in Knoxville who's been taking care of her here. Who knows what is going on....hopefully nothing new...trying to think of what it could possibly be....not sure if it's due to the possible chicken pox exposure, because she still has a couple of days we need to watch for breakouts, or if it's something like a sinus infection brewing, because she still has a runny nose, or if it's something with her eyes (we've noticed them looking swollen and her right one looks particularly red underneath), or if it has something to do with the bacteria. When you are waiting on cultures, the Hospital will call if something grows. So, since we haven't heard anymore about Saturday's cultures, I am assuming that they are still negative. She hasn't been as perky today, and she "just doesn't look quite right through her eyes" if you know what I mean. Please pray for her to get over whatever might be going on in her body.....Thanks, we appreciate it!

Megan

Please pray for these 2 children and their families 2-nite, they have received horrible news, and I'm sure they would appreciate your prayers.....
Sydney Ives
Mary Kate Rushing

Please keep remembering Caleb Parsons, and his family, too.

THANK YOU!

8 Oct 2008, 10:38am EST
Still no word that a bacteria is growing on the 2nd blood cultures from Saturday. They have a 5 day period of testing the cultures....so far, so good. She is still acting like she feels good. I take her back to clinic on Oct. 20th, to make sure the bacteria is cleared up.

We went for a walk last night....from where we were walking, you could see the interstate...when Erica mentioned this, Kara decided she wanted to go to the interstate....we didn't venture that far.....Tony picked us up in the car, and we headed back home. It was time for her i.v. antibiotic again.

I know I sound like a broken record about the accutane. With this round, her side effects (red, dry, peeling, skin) seemed to be worse around the time she was in-patient, but it seems to be pretty manageable with the lotion. When home health delivered her meds last night, I mentioned it to the nurse. She said it could be the antibiotic is adding to the side effects. We also showed her Kara's skin on her chest where her bandage and tape is at for her central line. When I changed her bandages, and cleaned her skin, it was a little red. We use alcohol swabs to clean with, so you can imagine it did bother her when we used those, but now it is really red, and raw-looking. The nurse thought it was an irritation to the tape we're using...(it's the same bandage/tape that we've always been using, though.) It looks like it would be sore, but she doesn't complain, and when we ask if it hurts she says no. I'll probably try to use an antibiotic ointment on it.

We're tyring to play it low-key around here. Pray that we get a break with the infections, and fevers for a little bit. It seems like every month that we've been home, we've had Kara at the e.r. for something. First it was a virus, then strep throat, now this bacteria in her blood. I started lysoling the kids' backpacks when they come in from school. I called her Oncologist in Knoxville about getting her flu shot. They have them, and can give it to her, they are just checking with St. Jude to make sure they want her to have one. I'm hoping we have smooth-sailing this winter.

About her eating....Kara is still doing pretty good, and we noticed her little tummy is pooching out. I love it! Well, gotta go for now. Have a great day!

Megan

6 Oct 2008, 9:30pm EST
Note from Webmaster: There was a problem this weekend with getting the files updated, alot of folks may not have been aware of the ordeal Kara was involved in with her infection, my apologies. They tell me the problem is now corrected. Below are the emails I recieved this weekend but was unable to post.
Jeff

6 Oct 2008, 3:40am EST
Not sure if Mom has updated or not since we got home, so here's an update on kara.

We are at home now. Evidently, the infection was a true blood / line infection. All 3 cultures from Friday night in the e.r. were showing bacteria growth (both lines, and her peripheal blood draw in her arm.) The technical diagnosis is : Gram positive bactaremia, diplocococus (sp?). We were told this is easily treated. On Saturday, when she was admitted they drew more blood out of both lumens in her line to re-culture. As of today, they were "negative." Home health delivered some of her med's, and we went over paperwork and procedures, and I will be able to hook her antibiotic up here at home. She will need it once a day for 10 days, and in 2 weeks she will need to have her blood re-cultured to make sure the bug is cleared up.

I told Dr. Malik that Kara's been eating better in the Hospital than at home.....Do you think that reflects my cooking?! Okay, you don't answer that one! I told him how much fun she had been having, and he told her she could stay, but she wasn't for that idea...She was playing, eating, laughing, drinking fine, and never ran another fever. I am thankful that things started going in our favor pretty quickly. The first 24-48 hours are the most critical, and we're past that now...

There is also the possibility she could have been exposed to the chicken pox, so she is supposed to stay away from anyone who isn't immune to that for the next 5 days -that's amount of time left that she has where she could still have a break-out. She may not have been "officially" exposed to it, so this is assuming she was. We were told that children who have never had the chicken pox can still be carriers of it. (Kara's not had it, but she had the vaccine when she was little.) But, she will need to have her shots re-given at 1 year post-transplant. Tuesday will be 6 months post-transplant, can you believe that ?!

Well, I just thought I needed to let you know where she stands now, we still appreciate all the prayers. THANK YOU! Pray that this goes away completely, and for good. I don't want to ever have to battle this thing again....direct lines are so risky. We told Dr. Malik that, personally, we're ready for her line to come out, but not medically. Tony and I both will be glad for the day when it can come out, but it saves her from the "pokies" that she so hates! That was her biggest fear throughout her treatment. I am so glad her G-shots are in the past now!

I know that I have a lot to be thankful for...I just need to stay focused on that, and all that God's done for us. I've found that since coming home from St. Jude, and staying busy with everything, it's really easy to take my blessings for granted. I don't want to get a complacency about me with what the Lord has done for us, and for Kara. He sure has helped us so much, and blessed us. Please keep praying.....

Good night, and God bless,
Megan

5 Oct 2008, 9:11pm EST
This is Mamma Mary again. We brought Kara home from hospital around 6 pm tonight. Tony went on to work and we picked up the other kids and waited for Home Health to bring Kara's meds and all is well. Kara is happy to be home and so are the other children, and Mom & Dad too!!! The Dr said it's a true blood infection since it's showing up in all three samples. He believes the antibiotic they're using is working because he sees that Kara is responding to it very well. Kara is so very blessed right now. The Dr. wants us to stay away from other children who have been exposed to the chicken pox and to watch for any signs of any of the kids coming down with it. This is something he really wants to avoid, but unless we keep her in the house, how can we be sure she's not being exposed again? Megan is a great Mom, she senses when something isn't right and she is right on top of things. I hope she doesn't mind me saying so, but we're very proud of her, even if she is ours. She's precious, and Tony is very special too! Kara has to take this medicine for another 10 days or so and the Dr wants to see her in his clinic for blood samples and cultures next Monday, on the 13th. Hopefully all will go well and nothing else happens. Home Health will come again on Tues. and bring some more meds. They just bring enough for 3 days a t a time. They check her temp and listen to her heart when they come too. We are thankful that Kara doesn't have to go to the clinic or hospital for this.

Well, that's about all for now, it's late and we're tired. Thank you for checking in and all your prayers, just please keep praying.

God Bless,
Mary

5 Oct 2008, 9:22am EST
This is Mamma Mary again, Kara is feeling real good and is playing and laughing, her fever is gone also. Thank the good Lord for this!!! We aren't sure exactly what is gong on, what we do know is there is infection showing in her blood, and both of her direct lines are showing positive when cultured Friday night. Her white blood counts dropped they are 3. and were 7. the night before. We are waiting on the Dr to explain this more. This is still an OK level. They know a virus will cause a fever and a drop in white blood cells. They aren't sure if the blood was contaminated due to a mishap with a blood sample when she was admitted, or a contamination from the skin, both is possible. Evidently there was a fault with the vial and it broke. This sample showed positive for a germ within 8 hours. Another sample was taken yesterday and we don't know what it shows yet. They need 24- to 48 hrs for the results. This germ that is showing up is easy to treat,. (gram positive ducacaucus) Spelling is wrong I'm sure.. She gets an antibiotic through her line at 10 pm. They rotate on back and forth between her 2 lines. This must be continued around 10 days after a negative culture is found. This is something that Megan can administer for Kara herself at home. They will supply the necessary meds and supplies for this.

There is a possibility that they may get out today. The Dr will be around to explain the blood cultures and he's encouraged about how things are going. Kara is doing GOOD!!! We are very thankful to the good Lord for taking such good care of our Kara. We'll update more soon

God Bless,
Mary

4 Oct 2008, 1:10pm EST
This is Mamma Mary, Megan asked me to please update for her, as they are on their way to Children's Hospital in Knoxville. Last night I was watching the twins while Megan was at the store and Kara started feeling tired and she felt just a little warm. When Megan got back she took her temp., but it was normal. Just a short time later she checked it again and it was what St Jude calls a fever, so off to Children's hospital they went. Tony was already at work in Knoxville, so he met them at the hospital. They took blood tests and cultures and started her on 2 antibiotics through her direct line. The blood counts were all in the normal range, so they sent them back home. They got home around 5 am this morning. The Dr said he'd check the cultures and call them this morning. Well, he called and Kara has an infection in her direct line again. From past experiences, this can be serious. We are confident that we're getting it early so this is a plus for Kara. She is being admitted for 3 to 4 days and will be given antibiotics to clear this up. Please pray that this will work and that all goes well. Megan and Tony need prayer also, they are worn out and worried about all the kids. They didn't get much sleep and then had to grab clothes, make arrangements for the children, and hurry back to the hospital. Aunt Dina has Erica, Brent & Lauren. She is going to take them to see Kara this evening. Kara wants everyone to come and be with her. I'm thankful that they didn't need to go to Memphis, this will be so much easier on everyone. Please pray that Children's takes as good care of Kara as St Jude would. I'm sure the Dr will be in touch with Kara's St Jude Dr's. This is Dr Mallick, he diagnosed Kara back in June of 2007, and was able to get Kara admitted to St Jude.

Megan has the lap top with her, so hopefully she can get a connection and be able to do the updates for Kara herself when they get settled in. If not, I'll try to keep everyone informed from here.

God Bless,
Mary