30 July 2009, 1:59pm EST
Kara is eating a little bit better now. She's ate some pizza today & she was asking for chocolate, and we were out, so she headed over to Papaw's house (that's usually a sure place to find it at !) He said all he had was a Butterfinger, and she nibbled on it like a little bird...... I'm adding chocolate to my grocery list....I'm going to order Duocal today for Kara to try.... I'll let you know how that goes, too!

On another note, I really wanted to make mention of praying for Elizabeth Dunford again, and give you her caringbridge site. www.caringbridge.org/visit/elizabethdunford. I've really had her and her Mom on my mind. Fighting cancer is bad enough, but right now they are only able to diagnose 1 thing, while there's been so much that's been happening to little Elizabeth's body. Their family has been in an ongoing battle, and has faced some very hard days. Please encourage this family, and lift them up in prayer.

28 July 2009, 6:06pm EST
I just spoke with Kara's N. Practitioner.........The protocol reads that if there are blisters, we can hold the Sorafenib. So, we are holding this drug (still continuing the low-dose once/day cyclophosomide) and Sandy will check back in with us next week. Kara's next appt. is Monday Aug. 3rd in Knoxville - same thing as today.

28 July 2009, 4:47pm EST
Not long after Kara was awake today, she was complaining with her feet hurting. She has 3 blisters on her feet. But, she is doing fine with them now. Today's visit at clinic showed that kara's dropped close to another pound in weight. She weighs 37.62 lbs. now. Her N. Practitioner at St. Jude said she was talking to the Nutritionist about Duo-Cal. It's something that adds calories to whatever she's eating, and she's supposed to not be able to taste this. I will definitely be checking into this soon!
Her blood pressure was fine, and I don't know anything yet about her urinalysis.
Kara's ANC has dropped down to 343. She doesn't have much of a defense at all now against germs. It's to the point, where if she runs a fever, she will automatically be admitted. ******** Please pray this doesn't happen !!! ********

I don't know exactly where we stand on our next trip out to Memphis. She's due for chemo (if we stay on schedule) Aug. 11th. But, I don't think she can have chemo if her ANC is below 500, and they don't recommend that she fly either. Kara's N. Practitioner is checking over the protocol and going to talk to her Dr. about her ANC, and she'll let me know more.

As we were leaving Children's today, we saw our friends, the Crisps'. They were at the E.R. with their son, Grant. He woke up this morning with chest pains. He was also running a fever. So, please pray for Grant, that this is nothing to worry about !!! THANKS !!!

27 July 2009, 3:06pm EST
Happy Monday to you all!

Kara had her K-garten physical Friday.....I found out one of the Pediatrician's at their office is a St. Jude-trained Dr. That was interesting to know. I found out Kara's Body Mass Index is pretty much perfect. She said Kara is lean, and that she's supposed to be. She wished she saw more BMI's like hers. I was reminded that when Kara isn't feeling well, and doesn't want to eat much, to make sure she gets her protein. Things went fine with her vision and hearing test. She just couldn't get her vaccinations while she's currently on therapy. Those will all have to be caught up later on. ******* Please keep praying for fever and illness protection while Kara's still doing treatments ********

We had 2 awesome services yesterday morning and night at Church. It was so reviving. When you get weary and your mindset isn't at it's best, there's nothing like the touch of God to encourage and give you a new start to go on. A lot seemed to get help. Our youth group returned from Youth Camp in Ky.....We didn't make it Friday night, but Erica talked and talked about it Saturday when she woke up. She said it was so much fun. I even think she won't mind if we happen to show up next year! The camp is hosted by Brooklyn Durham's church in KY. The first night they dedicated their tabernacle in honor of Brooklyn Faith Durham. Please keep remembering her family in your prayers, and also Alexa Maynard who is on treatment for Leukemia. Alexa is my Pastor and his wife's niece. She was at Church with us and we were able to meet her and her Mom for the first time. She's going back home to Florida today. Her carepage is: www.carepages.com Visit: AlexaMaynard. (The A & M need to be capitalized to view her page.)

Please also pray for Clay, & Elizabeth. Elizabeth has really had a rough time for a while and is in ICU at St. Jude. Clay and his Mom thought they would be getting to go home 100 days post-transplant, and the day before they were going home, found out his cancer was back. Pray for strength and healing for these families.

Kara returns to Knoxville clinic tomorrow to get her bloodcounts and bloodpressure checked. She has a couple blisters on her feet to come up, but they are tolerable. This is a side effect of the oral chemo Sorafenib. She also is pretty pale while on these chemo drugs. It's not that her hemoglobin is low, because it's within normal range while she looks pale. It just must be the medicine. Have a great day, and I'll update after I get her counts. Megan

22 July 2009, 10:29pm EST
***** Please lift my family from Connersville, Indiana up in prayer......Visitation & funeral for Janet Steinard is tommorrow and Friday.....****** I know she was faithful to pray for Kara and was a big support to us. I would appreciate all the prayers for her own family at this sad time..... THANK YOU!

I've got a lot of information from our most recent trip to St. Jude's....First, and very importantly.....Drumroll please.......Final bone marrow report reads that it's NEGATIVE. This makes 2 in a row! Praise God from whom ALL BLESSINGS flow! Her EKG is reported as normal. The Echo report wasn't back as of yesterday. She had a test done that checks HVA / VMA in her urine. These levels are tested that may be used for diagnosing, monitoring, and screening Neuroblastoma. In patients with Neuroblastoma, these levels are increased in most people. The numbers were "very low" and from what I've researched, appear to be in the normal range. Which is great. HVA was 6.3, and VMA was 3.3. Kara, it seems, has had quite a few urinalysises lately. Recently, they have found a little protein in her urine, and also some red blood cells. Well, good news is, they did a culture this time, and so far it's negative. The culture can take up to 48 hours to complete. So, hopefully, this has been nothing to be concerned about. I'm not sure if they will request having weekly checks on this or not in Knoxville. Sandy was going to talk with Dr. Furman about it. Kara will return to Knoxville for weekly lab checks along with having her blood pressure monitored. She shouldn't need to go anymore than 1 time/week.

Kara's ANC was only 800 on Monday. It's still high enough to start chemo though. This time there wasn't a break before we started. The way the protocol is written, the chemo cycles are every 21 days....continuously. Kara received her i.v. chemo yesterday morning, and all went well. There aren't any more extra blood draws to test the levels of the investigational drug in Kara's system now since the research blood draws were only during round #1 & #2. We are currently on rd. #3. Like I've mentioned before, I don't know how long this chemo will continue. If all is going well, Kara COULD continue to be treated on this study for 24 courses, (about 18 months.) It's our desire that Kara can come off of this treatment very soon. Yes, we have the ultimate option of deciding to stop treatment now, but we also realize Kara's Dr. doesn't recommend doing this yet. We are weary at times, yes....I know I probably sound like a broken record about mentioning school, and all. But, she will be exposed to more illnesses then, and also it will be more to work around if something arises. Plus, we still have exams and bone marrow procedures to do after every couple of rounds of chemo, along with i.v. chemo that's supposed to happen every 21 days which all takes place in Memphis...and normal daily happenings still continue....So, Please pray for this situation that God works it all out. She begins K-garten Aug. 12th. I talked to Dr. Furman about what to do when she gets at the "risky" level for infection.... I won't hit everything he said, but I was forewarned that she probably will end up in the Hosp. for a few days. He did say that's how they develop their immunity - by being around it. I told Tony just this evening that basically it would be nice if she could be off of treatment before we work on developing her immunity this way. Here lately it seems there's been a lot of dread on my part for just this whole package of what's going on right now......I know I should just concentrate on the blessings that she is doing as well as she is, and how far God has brought her - and take everything 1 day at a time. Maybe I'm just venting a little tonight.... So, on to another subject.....

About the Nutrition visit we had on Monday...Kara's weight loss hasn't brought her below her ideal weight for May which was 38.28 lbs. - She is currently 38.72 lbs.) Right now there is approx. a 10 pound difference in Kara & Lauren. This is the largest gap that I can ever remember there being. Her Nutritionist said, " I know she looks skinny, but kids are supposed to be skinny." She was nice and helpful. She offered tips to add calories. But, it seems we have tried a lot of these already. We did try mixing Pediasure with whole milk and added strawberry quick also. But, she detected the Pediasure right off the bat. She said, "I don't want St. Jude milk!" So, I went back to only whole milk with the quik....She drank some of it. She is doing okay on her eating the past couple of days, and I was told to let her know of a fast drop in weight, which might help to get permission try an appetite stimulant...The one that was mentioned before is related to a drug that was given to Kara at transplant...which unfortunately, after it was given, Kara had an allergic reaction. There are 2 other types of stimulants. Hopefully, we won't even need them....

Our return flight was last night and Kara was happy pretty much from the drive to the airport on. She didn't dread it, and she really surprised me by how much she was talking on the way there and in the airport in front of other people. I tell them at the Hosp. that when she gets there she clams up. She hardly ever talks to them. It's not that she doesn't like them, she just doesn't say anything! She does smile though! Our plane took off in the rain, and we even saw lightning outside of our window....Not too reassuring! But, we got above it all later and our flight was safe. We had our seats switched because we weren't originally scheduled to sit together...Didn't like that idea, and they were able to sit us together in the front row. We could see in the cockpit before takeoff....All those buttons and gadgets......Looked complicated to me! Well, I will go for now. Please thank God for His healing touch on Kara's little body, and pray that she remains free from sickness while she's still on therapy. Thank you ALL for every prayer and for checking in. We love you guys!

God bless!

18 July 2009, 1:54pm EST
It's been pretty quite around here. Saturday, the kids were occupied....Brent went to Papaw & Mamaw Lee's house. Erica & Kara spent the day with Mamaw Mary, and Lauren hung around here at the house, and then took a nap. I thought the trip must have really worn her out, but later realized the reason for the tiredness. She wasn't feeling well, and was running a fever of 102*. We found an after hours clinic nearby, and they tested her for strep throat (rapid test only) and also the flu. Come to find out, they have seen the swine flu in their clinic.........Yikes! Thought I'd get a positive strep test, but both tests were negative. The Doc has Lauren on an antibiotic that covers summertime illnesses, and we have separated the kids. Brent & Lauren are here at our house-(they will be together anyway this week while Erica, Kara, & I are out of town). Erica & Kara are staying with Mom & Dad. Erica's due to go to camp.....don't want to have her sick and out of state, while I'm in Memphis getting chemo with Kara.....Kara just plain doesn't need an illness to complicate things right now! Came home and washed clothes, etc. Nothing like going to the Dr. to get better then leaving, only to fear bringing the swine flu home to our family, huh?........I'm guessing everything will be fine, though! ........

Hope you have a blessed week.....I'll try to update when we get back from Memphis. I've updated a few recent pictures to our Shutterfly site. Just click on the Lee Shutterfly Site icon on Kara's homepage. Take care!

17 July 2009, 10:17pm EST
Well, we made it home, and with good news. The CT scan was fine, the MIBG was Negative - no glow to it, and the preliminary bone marrow biopsy results were a little hard for Kara's Nurse Practitioner to explain. She said that it wasn't bad. There is 1 small clump that showed up in the sample, but the pathologist reported that it appeared to be "dead." Sandy said when she had better wording for us she would let us know. We are thankful for this report. God has been good to us..... Kara's lower back has been sore from the pokes from her biopsy, but she is getting along good. Her appetite has been good today, too. I wish everyday she would have a desire to eat like she's had today.....She was weepy today, saying she didn't want to fly to St. Jude. We head to the airport around 5 a.m. Monday morning, and return home around 10 p.m. Tuesday night. Then, this coming Friday Kara has her K-garten physical. It would be nice to know when the official "end" of treatment is for Kara, but as I'm learning, you take it sometimes day by day around here. Everything so far always seems to work out. I guess I just need to not get all worked up over the little things! Something funny happened today as we were leaving the Hospital.....Tony, Brent & Erica went in to use the bathroom, and I was going to drive around to pick them up out front. Well, the back hatch to our car was all the way open, with all of our luggage and belongings showing. Well, I look in my mirror and REALIZE it's ALL the way open, so I stop, and get out to close it. When I get out, there's a man in the parking lot who was almost at our car, who was nice enough to let me know he was about to tell me what was happening. Well, after I shut the hatch, I see Tony and the kids coming down the parking lot. When I get back in the car Lauren, tells me that was embarrassing. She said she could feel the air (coming through the open hatch.) I started cracking up. Then here comes the kids and Tony joking about it. It was really funny. I was still laughing about what happened and what Lauren said a few hours later. It may not sound funny telling it on here, though..I guess it probably is one of those things where you need to be there to see the humor in it...Sorry if I bored you :- )

But, we had overall a good trip, and it turned out pretty eventful. We almost had a wreck once we made it into Memphis. A car was headed over into our lane, and thankfully Tony grabbed the wheel and moved us out of the way. That had him a little shook up afterwards. Tony completely broke his finger into, the next night. He cracked the bone this past week, but he's really broke it all the way through now. He has a splint...if I can just get him to wear it! The twins both got to go to Build-A-Bear for the first time. I took some pictures. They really enjoyed it. They've been wanting to for a while now, and we decided to go take them this time. We seemed to get in bed late about every night, but got some quality time in, too. Sometimes it's hard to find! Well, I will go for now. I think this update's gotten pretty lengthy! I hope you all are doing well!

Megan

16 July 2009, 7:44pm EST
Kara has gotten through all her testing fine, she's a little more tired, but she's doing good. Her blood counts continue to be good. We only know the results of the CT Scan, and it is fine, Praise God! They will be going to clinic again tomorrow morning, before coming home, and they'll find out how her MIBG scan was and will get preliminary results from the BM biopsy. Dr Furman said the way she looks, he doesn't suspect anything will show up.

The plans are for them to drive home after clinic visit tomorrow. Then Megan & Kara will fly out Monday to St Jude. See the nutritionist, since she's lost 1 1/2 lbs. and have lab work done. If she's cleared for treatment, which they're sure she will be, then Tuesday she'll have her IV chemo and then fly back home. Tuesday will start round 3, we're not sure how many more rounds they'll want to give her.

Things are going great, just hard to keep up with the crazy scheduling, especially with summer coming to an end and all the extra things happening. But, God is truly wonderful and we are extremely blessed. We appreciate you checking in and the continued prayers going up for Kara and family, keep lifting them up in prayer and all the other little ones fighting this horrible disease.

God Bless you all and have a great weekend!
Mary I.

13 July 2009, 3:38pm EST
Things went well at clinic today. Kara had a visit from the clown volunteer - which she still acts like she would rather him not come around. She acts a little unsure around him. But, he did get a smile or 2 out of her, and the good news is that her counts are good. Her platelets and white blood cells have dropped some, but her hemoglobin is up, and her ANC is 1300. I just hope that her counts do like Dr. Furman said they might, and that is "plateau". Also, too, he mentioned on the continuing rounds of chemo, we may find that she becomes more tolerable - as far as bloodcounts go. Please pray that this happens! Especially since school is right around the corner! One thing that has happened is a drop in her weight. I could tell this week that her legs were looking thinner. But, when we left clinic she ate a whole cheeseburger patty and drank part of a strawberry milkshake....That's a good start in the right direction! I just wish the chemo didn't affect her this way! Dr. Malik took a look at her leg, and wants St. Jude to look at it, and decide what to do. He gave me his opinion as to what it could be, but he doesn't deal with one of the drugs that Kara is on, and is leaving the decision on what to do about it up to St. Jude. That's fine with us, too. She has also experienced discoloration/no pigmentation/white splotches on the inside of her elbow where her eczema is. I think this might be a side effect of 1 of the chemo drugs. Anyway, she has had this before, and they will take a good look at her in clinic this week. So, I better get packing. We are heading out probably late morning tomorrow. If I don't get to update while we're away, I'll have Mom update the results when we get them. We shouldn't know anything before Thursday afternoon.....Take care & have a great week!

Megan

12 July 2009, 11:15pm EST
Hello!

I guess on my last update I left out a couple of other things coming up, too.....

When we get back from St. Jude at the end of this week - Thurs. or Friday, I need to catch up and get things organized over the weekend for our return trip to Memphis for Kara's chemo, and also for Erica. She is leaving out the week of the 21st with our youth group from church for youth camp. This is the first year that she will be old enough to go as a "camper" without mom and dad going too. Tony & I were able to travel along with the youth leaders and kids one year (the summer before Kara was diagnosed in 2006) and took Erica & Brent with us. We all really enjoyed it. I thought this year it would work out where we might be able to head up in time to make the Friday night service of youth camp....(It's only about 3 hours from here.) Erica doesn't like that idea, but I told her she could ignore us! : -) I guess I'm getting a taste of what's ahead in her teen years! But, that also happens to be the same day Kara has her K-Garten physical. So, we will see if it happens or not! Kara can't have her vaccinations since she is still receiving treatment, but she can get the physical part that's required for K-Garten. There registration is Aug. 6th.

Kara has a couple new spots that have came up on her skin. One looks like eczema, and the other appears to look like either eczema or a sore of some sort. That one hurts to the touch. Kara's appetite still isn't what I'd like to see it be, but it will do....This morning after church we had a going away dinner for a couple that's moving out of state. WE WILL MISS YOU, Barry,Cindy, Victoria, Levi, Rachel & Adam !!!!! Kara picked out all kinds of food to put on her plate, but when it came time to eat, she just nibbled. I think what she ate the most of was Bro. James' dumplins! Afterwards, the kids all played outside together. We had a good time of fellowship, and we had a visiting couple (related to the family who is moving)this morning come who has been praying for Kara. We had a good talk with them today. I hope everyone out there who has sincerely sacrificed time in prayer and fasting for Kara to know that I appreciate your concern, care, love, & sacrifice! Remember Kara this week, as it happens to be scan time again...... I will keep you posted on those!

If I had to guess, I would say that her blood counts aren't too low. Overall she has been acting fairly well considering she's still on treatment. This morning she was up before me, then to my surprise brought me a toy tray with a granola bar on it for breakfast in bed! She got my flavored H20 out, but it was too heavy for her. She's spent a good amount of time playing with her cousin this weekend, too. Well, I better get some zzzzzz's. I will update tomorrow probably between clinic and packing and let you know how her bloodcounts are.
Please remember these little ones in your prayers, too.

Kenyon - battling 2 different cancers at once.
Carson - after many months of being No Evidence of Disease a clump of cells were found on his last bone marrow biopsy.
Sydney - on hospice and her Grandma is having surgery for her esophogal cancer.

9 Jul 2009, 12:55pm EST
Hello! Just a quick update to let you all know how it's going. We made it to Church last night, and Kara got to sing with the children's choir. She is doing okay, except, for me, I would like to see her eat more and see her appetite pick up. I remember in the beginning of her treatment, Dr. Furman told us she would probably "snack" eat all through her treatment. Her hands and feet are not as bad as they were during the 1st round. Her eczema seems to be a bit better today. She does look a little dark under the eyes, and her eyes look a little sunken at times. She is still playing, and eating and drinking. Right now the girls are over at Mom's house while I tackle some paperwork, and Tony and Brent and his cousins are working on Papaw Butch's house.

July 13th Kara has a clinic appt. in Knoxville for labs and a check-up
July 14th we will be traveling to Memphis (probably all of us will be going) for scans that week. We will come home probably Thurs. or Friday that week.
July 20th ends this 2nd round of chemotherapy. If we stay on track, she is due to return to St. Jude then, because Rd. #3 is scheduled to begin on Tues., July 21st. That is when she will receive her i.v. chemo for the new round.

I'd appreciate your prayers for the upcoming weeks. School is due to begin on Wed., Aug. 12th for Brent, Lauren & Kara. (I am homeschooling Erica beginning this year. This is a first for me - I am excited about this opportunity! I was pretty stressed because it was all new, and I was trying to figure out how you go about it all. But, that is all under control now, and we have it pretty much lined out!) That also happens to be the week of our annual church campmeeting, and like I said, if we are staying on track with Kara's chemotherapy schedule, she ends round #3 on Mon., Aug. 10th! I know that there will be scans again when she ends treatment. I am NOT sure when exactly the end of her treatment will be, though. If we were to only do "a couple" extra rounds, Round #3 (Aug. 10th) will end the 2 extra rounds. We will know more from her Doctor as we go along, so, I'd appreciate your continued prayers for us all as we continue this journey. I am so thankful that in EVERYthing we have faced along the way, the LORD has worked it ALL out. It's easy to get fretful when you see what is ahead on our path, but if I keep my eyes on JESUS, I can stay afloat, and make it! He continues to give us the strength that we need. I am so glad we serve a God who is so mindful of us in every situation, whether it be a huge mountain, or a small hurdle we are facing. God IS faithful! I hope you have a wonderful week!

God bless!
Megan

6 Jul 2009, 6:49 pm EST
Well, it is quiet here, and I have a chance to do an update......Sorry for the delay. I don't usually like to let it go this long, but like I've said before, here lately, it has been quite busy! I actually did try to do an update, last Monday, and I lost it, and I gave up after that. It was another hectic day.....

Last Tuesday, Kara & I flew back out to Memphis, had counts checked, a clinic visit, and Kara received her i.v. chemo. Kara has been on the oral chemo since then, too. Her counts were really good.They chose to reduce the dose of only 1 chemo. All other doses of meds remained the same. The sorafenib is the drug which caused the places and pain on her hands and feet. We headed back home last Wednesday after a close call. We almost didn't get to make our intended flight. When I got to our gate, I found out that the flight was a pretty full flight, and we were last on the waiting list for us to get to take the flight, but fortunately there were other people who volunteered for a later flight, and it all worked out so we could make it home as planned...That was a big surprise there. Our flight was supposed to be confirmed. Oh well, huh ?! ...Tony's brother, Gary, and wife, Judy, came in that night, and they stayed with us some over the weekend. We got to visit with some of Judy's family, too, that stopped in town. It was good to catch up again. We grilled out one night, and then roasted hot dogs and made smores on the 4th at Mom & Dad's house. Tony and some of the family worked on roofing his Dad's house, too, and we got a yard sale in, too!

Today, Tony took Kara to Knoxville for labs and a check-up. Her counts are good, and her blood pressure is fine. Her weight is pretty much stable. On the way home, Kara was eating on a french fry, and got a little shook-up. Her bottom tooth came out! It has been loose for about 1 1/2 weeks. It was the same tooth that Lauren lost. Tony tried to find it in the car, and had no luck....She may have swallowed it! I took Erica & Lauren for their well check-ups, and vaccinations today. They both had 4 shots. So, we took a trip afterwards to Wal-mart for a small treat, and it's back to the norm around here now! Well, that's about all for now. Pray that Kara's counts don't drop to the point of being suppressed like they were last round. God has been mindful again. Kara's hair hasn't fell out. Please pray this doesn't happen. I know it's just hair, it would grow again. But, for a little girl about to begin school for the first time, after it's getting long enough to curl with an iron, and she's so glad to be able to fix it herself in pigtails.....What a dissapointment if it were to come out again..... It would make her more self conscious I know - now that she's getting older and she has hair. Well, take care, and thanks for checking in on Kara and us! I hope you had a wonderful 4th of July holiday....Oh, I almost forgot....Kara goes back to Knoxville for a check-up on Monday, 13th, and then it's already time for her scans again that same week in Memphis. With this being a research study, there are more scans and tests than usual. Please keep praying for us all this summer that life works out smoothly........... :- ) I'm really ready for a rest! I said it seems like ever since we went to St. Jude at the end of April it seems like it's been about non-stop! Well, it's keeping me from being getting lazy this summer! :- )

Megan