26 Jun 2009, 3:06pm EST
The results are in: ANC of 418....Not much higher, but climbing. Hopefully, this trend will continue! She has almost reached the level of not being anemic, also. Please keep praying for a fast rise in counts. Dr. Furman still doesn't want Kara traveling with her ANC below 500. I am comfortable with this! : -) She will go back to Knoxville on Monday, for more bloodwork, and I'll check back with St. Jude when I get the results. So, again, we wait, but this allows us some extra time together here at home on Sunday as a family, since Tony doesn't work at the shop this weekend. This also allows me to get some overdue paperwork tended to here at home! And, I guess I needed the reminding from Kara's nurse today, to allow some time for "play", too! Life is too short to not take time out to laugh and smile and spend time together with your loved ones! Hope your weekend is a great one!

God bless!

25 Jun 2009, 4:45pm EST
Just when you think you have everything all figured out, and everything worked out, you hit a bump in the road.......Everyone's schedules seem to be so busy, and we got everything arranged with the kids, jobs, Dr. visits, etc., and we find out yesterday Kara's ANC was even lower than last week. It was a whopping 375! So, this makes 2 times in 2 weeks that I've been shocked to see what level her ANC was! Even her red blood cells had dropped down to anemic level. Dr. Malik asked me if she acted like she caught a cold. (Viruses can lower your counts.) But, she doesn't have cold symptoms. So, they don't even want her traveling with her defense level this low...The plan is to have counts taken again Friday morning in Knoxville - no clinic visit this time - just through the lab. (3 bloodcount checks in 1 week!) If her ANC is 500 or above, they're talking about Kara & I flying out to Memphis on Sunday, be seen in clinic on Monday. They have decided on going with the count of 500 to start chemo, instead of 1000 now. They re-checked the protocol, and she DOES qualify to restart chemo with an ANC of 500. Tony & I would rather wait until her counts have recovered, but it looks like this is what the plan is. It has been so long now since Kara's ANC has been this low, and Tony & I both don't want her levels to fall to this level again. I'm not sure if it 's the chemo or if it's something else like a virus that has her immune system suppressed. Dr. Malik reminded me in clinic was that if Kara runs a fever to call him..... Please be praying for her that she remains fever free and her counts rebound VERY FAST! I would love to be shocked at how high and fast her ANC level rises instead of what we've been dealing with! She has been more tired with her counts down. Her hands have almost completely healed. It's her big toes that we are dealing with now.

Thanks!

22 Jun 2009, 6:45pm EST
Well, clinic came and went, and I just found out we have to do a repeat clinic visit on Wednesday. Kara's ANC was 950, and I was under the impression this would be fine to start chemo. But, I got a call from St. Jude, and they checked the protocol, and it calls for Kara's ANC to be greater than 1000. So, If it's greater than 1000 on Wednesday, we will still be flying out to Memphis on Thursday. If it's still less than 1000, counts will be re-checked in Knoxville again on Friday. Her chemistries were okay, and her weight is still holding about the same. Her eczema has been flared up for a couple of weeks now. I am still using moisturizers on it. The places on her hands and feet are peeling. Overall, she has been doing pretty good.

Tony had to work yesterday, so we went to my Parent's house for Father's Day....(Dad was discharged Saturday.) and got to visit with them and also my brother, Morgan, too, who was in for part of the day. We went to church last night, which was the first time in a long time it seems like! When we came home, Tony had already cleaned up from work, and was ready to get some pizza.....then off to Wal-mart for a few things.....Things continue to stay busy. That seems to be life now a days! Just today I finished putting up the final things I had from our Memphis trip. We're a month into the summer school break, and I still haven't gone through the kids' backpacks....I guess I still have about 6 weeks left until I have to do that! :- )

Well, I hope Father's Day was a great one for all the Dad's out there.....I'm glad my Dad is getting along fairly well now, and I am thankful to have such a wonderful Husband as Tony is...I know I don't mention him much on here, but he is a great Father and Husband. I am thankful for the Lord allowed our paths to cross so many years ago......

God bless you all,
Megan

18 Jun 2009, 5:12pm EST

NO EVIDENCE OF DISEASE !!!!!!!!!

Okay, so we didn't get Kara's chemo today. Her ANC was only 500- I was shocked! It needed to be above this number for chemo. This also means she is at greater risk of infection. So, if she gets a fever, and her bloodcount hasn't risen any, she will go inpatient. We need to be more careful about the type of foods she eats, and all that good stuff we have to deal with ...Hopefully, this won't last long. We had to get some more masks for her to wear out in public, and she is being a trooper about it all. The plan is for us to still return home tomorrow morning. We have to be ready to leave at 6 a.m. - FUN! : -) She has to have her bloodcounts rechecked in Knoxville Monday, and if they're still not high enough for chemo, she has to go back to Knoxville clinic on Wednesday. If they ARE high enough then, she & I will fly back out to Memphis next Thursday - repeat today's schedule and fly back home on Friday. Dr. Furman is talking about a couple more rounds of chemo. I hope he doesn't change his mind and add more! He also told me that we may find she may tolerate it better (as far as her bloodcounts go) as we go along with the treatment. I still don't know if next round's dosage will stay the same or be lower. I will know next week.

As far as Kara and flying, her nerves were not too good right beforehand. She was crying on the way to the airport, and at the airport. But, when I asked her about flying home, she wants to! She liked the idea of having her own coke, and a little tray in front of her to set her drink on..I think that might have been her highlight! Well, I will go for now.....

Oh, Dad is doing a lot better now - Thank you for praying!

God bless,
Megan

17 Jun 2009, 11:47am EST
Just to update everyone.....We are preparing to head out to Memphis today.....Kara seemed happy the other day when she found out she'd be flying, but this morning she told me that the medicine she had taken hurt her stomach, then a couple minutes later she said that she didn't want to go to Memphis today. I think she may be a little apprehensive about flying- understandable-this is her first time. Pray that everything goes smoothly.....We've had a whirlwind of a week....A lot going on...Then, yesterday I had to call poison control center because Kara ate part of a leaf off of our Magnolia tree....They told me it wasn't a problem, depending on how much she ate, she may have an upset stomach. Well, it scared her a little, but she is fine.... Who would've thought...Monday night....Well, actually very early Tuesday a.m. they did emergency surgery on my Dad in Knoxville. He had a perforated diverticulum in his small intestine. This is fixed now. But, yesterday they had to hook him back up to the foley catheter. They are having to re-train his bladder. So, please pray that things go smoothly for him also, and that his bladder issue gets worked out. I think he had a rough night last night, but he is comfortable now. Pray for Mom, too. She is staying with him. Please remember my friend, Heather, in your prayers, and also TyLissa who has cancer in Connersville, IN. Well, I will go for now. Thank you all.....

Megan

14 Jun 2009, 9:12pm EST
Things have been busy since we made it home...We were welcomed with princess decorations and pizza, pumpkin pie, cookies, and presents for the girls. They seem to think whenever they come home there needs to be a party, I guess! Kara is enjoying being home, playing on the trampoline, and with her toys. Yesterday, Lauren & Kara really didn't act like they wanted to leave the house when we mentioned picking up Erica & Brooklyn from the youth car wash/yard sale. I guess that tells you how happy they were to be here playing again! Erica has already started picking out her clothes for youth camp (which isn't until next month!), and Brent is planning on going with his Aunt, Uncle, & cousin tomorrow to help work on a side job. Tony is back to work, and I'm still working on putting everything in it's place again here at home, and getting things caught up around here....

Kara's skin seems to be breaking out more inside her elbows where her eczema was, and her face is a little red, and has been peeling. We're still using lotion/aquaphor on her. We're wondering if maybe being in the sun in combination with the meds are doing this. The side effects from the chemo that caused the problems with her feet and hands are getting better everyday. No doubt that chemo will resume this week. St. Jude is flying Kara & myself out Wednesday evening. Early morning appts. will be on Thursday. It looks like they have us in the schedule for possibly a long day. If she's cleared in clinic, she'll get her i.v. chemo the same day. We're heading back home early Friday morning. They're letting us do the oral chemo here at home now. They really wanted to get a feel this last month of how Kara would do on the meds. Just on the first day of every round, she will have to have the i.v. chemo at St. Jude. Hope this finds you all well, and doing good.

Thanks for checking in and your prayers!

11 Jun 2009, 8:34pm EST
Just a quick update.....Thank you for every prayer.....The results we got today in clinic are:

"CT & MIBG are both fine." Bone marrow biopsy: "No Tumor Seen." Praise the Lord !!!!

They are still doing the "stain" on the bone marrow sample. This is to see if any Neuroblastoma cells are present. This will be the final report and we should know the results of this test next week. We are thankful for this news.....

As far as chemo goes, they are still holding ALL of her chemo for now. Dr. Furman looked at the spots on her hands and feet. We told him she started acting better today. He wants us to continue the 2 creams and 1 oral pill to help these spots until he sees her again. If she's better when he sees her again, then Rd. #2 will begin. He recommended continuing chemotherapy treatment that she's doing now. She seems to be able to handle these med's okay -for the time being anyways! We're not sure if the next round will be a decreased dose or remain the same dosage on the med that caused the problems with her hands and feet. We did talk to another Dr. in the waiting area today. She took a look at Kara's hands and feet, and she said it's happened to every child that's been on this study. But, all of the other kids have been able to function. This seemed to get better with one of her patients (without reducing the dose.) (Yesterday, Kara was packed around a lot. Plus, part of her day was spent asleep) - But, while she was awake yesterday afternoon, she didn't walk around a whole lot. So, we will know later on about Kara's dosing. Right now her Dr. wasn't sure if it would be reduced or stay the same for Rd. #2.

Her bloodcounts were all decent, too. I don't know the results of her Echo/EKG that was done today. I didn't ask...We were just trying to get everything else taken care of in clinic, and I thought that could wait.

Well, I just wanted to let you all know what was going on.....We love you all.

God bless,
Megan

10 Jun 2009, 4:19pm EST
Kara made it through sedation and her procedure and scan fine. We should know the results tomorrow.Tony went in the sedation room with her this time...when Tony returned from being with Kara, he wanted to head over to clinic to talk to them about Kara's hands and feet. He is currently in clinic now with Kara to see what we're to do. We just started the new meds to treat the syndrome yesterday, but yesterday they were really bothering her pretty bad. It hurts her if you even touch them. There are red spots, and some spots even have a white spot in the middle of the red circles. We do know the Sorafenib is the culprit and it does affect blood supply. So, I will know more when they are done in clinic. She wanted to eat and drink apple juice and peanut butter crackers when she woke up. We picked these up in the cafeteria, but she was back to sleep and hasn't had anything to eat yet today. We will work on this when she gets alert again. We plan to head over to the RMH to do laundry when we leave here. The kids are fine. I think at times they get a little bored, (naturally :-), but we've had fun times, too. Tomorrow will be a busy day here at the Hospital. Kara has to fast for 4 hours due to a CT scan with contrast of her abdomen, chest, and pelvis. She also has labs, and a Echo/EKG. I think this is just to compare where she is now from where she was before this new chemo started. We also meet with Dr. Furman tomorrow afternoon. I will try and update again tomorrow. Tony's just came back from clinic, and they said to hold her chemo today and also tomorrow's dosage until Dr. Furman will be able to look at her tomorrow. Well, Kara's irritable, and we need to get things done, so I will go. Thanks for checking in and the continued prayers.......Oh, we were able to get the girls' handprints done at the RMH last week.....on the 2-year anniversary of Kara's diagnosis.....You can view them on shutterfly if you haven't seen them......Oh, and another thing, we double checked about Kara fasting before and after 1 of her chemo's, and this DOESN'T have to be done like we thought.......This is WONDERFUL to hear!

Take care,
Megan

09 Jun 2009, 9:43pm EST
Kara is having her MIBG scan & bone morrow biopsy tomorrow, Wednesday. Then CT scan is scheduled for Thursday. Kara's having some trouble with her hands and feet. They hurt and are getting sores on them. She could hardly walk today. They say this is a grade 2 and they don't want to stop the chemo drug that is causing this unless they can't clear it up with medicine. They've given her 2 creams and a pill to help clear it up. Her counts are still dropping too. Please pray that her hands and feet clear up, her appetite gets better and her counts stop dropping.

God Bless,
Mary

06 Jun 2009, 5:17pm EST
Kara is getting along good.....Of course, there are days when I'd like to see her appetite just really take off and her weight soar, but I guess you would say she's staying steady....She's gone down, then gone up again, but her weight's staying in a close range. Her blood pressure was still acceptable for her age. Her blood counts are dropping, but they're not bad. I mentioned this to her Dr. today. He doesn't know if they will just continue to keep falling or not. Remember, this is a research study, so they are gathering information as we go along. He'd like to think that her counts would "plateau". I would like to think that, too.....

The ointment's doing the trick for her eczema. Her Dr. wanted to know if I thought it was helping her "hand syndrome" which is now on both thumbs. It hasn't made them practically disappear like it has her dry patches. Speaking of, we were sitting down for lunch today when Kara was talking with me about her chemo & her skin. She mentioned her eczema and called it "eckzimo." Which brought her to "eckzimo kisses." So, then we had to share an eckzimo kiss. It's funny how kids relate things.

It really looks like things are shaping up so we can go home. I'm thinking by next Saturday we'll be on the road hitt'in I-40 East. Dr. Furman mentioned we're 2/3rds of the way through this round, without any adverse reactions, and he thinks we've been here long enough....He said we can do the next round of oral chemo at home. Of course, the 1st day of each round includes i.v. chemo. Kara will get this on Sat., 13th here in Memphis. She will continue to be checked out and have labs through Knoxville's clinic. This is good that we can be together again under one roof! Kara already is in the schedule next week to have a CT scan of chest/abdomen/pelvis, MIBG scan, and also a bone marrow biopsy. Looks like next week Kara has to be at the Hosp. every day. I will keep you posted.

Please remember TyLissa from my old hometown in Indiana. She has cancer and I'd like you to lift her up in prayer....Thank you all!

Megan

05 Jun 2009, 0900am EST
Kara is getting along good.....Of course, there are days when I'd like to see her appetite just really take off and her weight soar, but I guess you would say she's staying steady....She's gone down, then gone up again, but her weight's staying in a close range. Her blood pressure was still acceptable for her age. Her blood counts are dropping, but they're not bad. I mentioned this to her Dr. today. He doesn't know if they will just continue to keep falling or not. Remember, this is a research study, so they are gathering information as we go along. He'd like to think that her counts would "plateau". I would like to think that, too.....

The ointment's doing the trick for her eczema. Her Dr. wanted to know if I thought it was helping her "hand syndrome" which is now on both thumbs. It hasn't made them practically disappear like it has her dry patches. Speaking of, we were sitting down for lunch today when Kara was talking with me about her chemo & her skin. She mentioned her eczema and called it "eckzimo." Which brought her to "eckzimo kisses." So, then we had to share an eckzimo kiss. It's funny how kids relate things.

It really looks like things are shaping up so we can go home. I'm thinking by next Saturday we'll be on the road hitt'in I-40 East. Dr. Furman mentioned we're 2/3rds of the way through this round, without any adverse reactions, and he thinks we've been here long enough....He said we can do the next round of oral chemo at home. Of course, the 1st day of each round includes i.v. chemo. Kara will get this on Sat., 13th here in Memphis. She will continue to be checked out and have labs through Knoxville's clinic. This is good that we can be together again under one roof! Kara already is in the schedule next week to have a CT scan of chest/abdomen/pelvis, MIBG scan, and also a bone marrow biopsy. Looks like next week Kara has to be at the Hosp. every day. I will keep you posted.

Please remember TyLissa from my old hometown in Indiana. She has cancer and I'd like you to lift her up in prayer....Thank you all!

Megan

03 Jun 2009, 3:21am EST
Today...(I mean yesterday) :-) turned out to be a really good day here. Mom & I stayed up WAY late after the girls went to sleep. We stayed up talking, and it was around 3:30 or so by the time we hit the sack. So, we were slow getting going on Tuesday. Kara didn't eat much before her morning dose of chemo, so she was hungry, and REALLY ready to eat before she was allowed. She put the clock in front of me for me to eye so I could let her know when she could start eating again. We set the alarm clock on both cell phones, and I told her when the alarm goes off she could start eating again. (I set it close to a half hour early). Bless her heart, she was comical. The alarms went off, and she realized what was going on. She started singing, "You can eat some pea-nut-but-ter crack-ers," "You can eat some pea-nut-but-ter crack-ers." "E-e-e-e-eat," and "You can e-eat some of the-ese," "You can e-eat some of the-ese." She ended up eating peanut butter crackers, and croutons. Mom baked cookies today, and the girls decorated them with sprinkles. Kara is a funny one. At supper, we had a group cater to the families here, and Kara ended up not wanting her b-b-q because she hurt her lip, and the seasoning bothered it. Well, she was requesting a grape sandwich in it's place-of all things! We never made it to the craft room Monday, but we did make it outside yesterday. We had a really good day just being here. Her arms are already looking great concerning her eczema, and we're still treating her thumb. That is strange. They call it hand/foot syndrome on the list of side effects. It's a red circle on the inside of her right thumb, and it feels kind of hard, sort of like a calouse would feel, and sometimes she says it hurts. It doesn't seem to have bothered her while she's been playing recently. I haven't noticed her wheezing, either. Well, I better go for now. I wanted to leave you all with a link to a photo website that I recently set up for us. I have seen other families that have caringbridge and carepage sites use this, too. I've posted some pretty recent pics, and a few that date back to December. I was kind of excited about it, and wanted to share it with you. I love pictures, so I'm sure I'll be adding more as I get them!

http://karagleefamily.shutterfly.com

Megan

01 Jun 2009, 11:33pm EST
Kara's labs were good. One of the chemo's she's on can drop her bloodcounts between days 7-14. We're on day 9. Her red blood cells went up, but her platelets and white blood cells dropped. They aren't that low, though. Actually, her platelets are still within normal range, and her white blood cells are still good for her. Her weight dropped a little, she's just under 40 lbs. Her blood pressure was still good, too. We had them look at the inside of her arms (at her eczema), and also at a spot that has showed up on her right thumb. It is red, a little hard, and she complains that it hurts sometimes. The thumb issue is a side effect of the Sorafenib. We are to use Aquaphor ointment (like vaseline) on her eczema and her thumb, and we can also keep using hydrocortizone cream on her eczema. Another thing we discussed in clinic was Kara's wheezing. I didn't even know she was experiencing this until clinic today. They said "That's good." (Because it obviously wasn't too bad of a case!) and they thought it seemed to clear when she coughed. I was telling Tony about it, and I told him she acts fine. So, they told me if she has anymore wheezing (If she has any wheezing like today I don't know that I'd know she was doing it!), or if her rash gets worse, to let them know. Otherwise, we have a break from the Hosp. until Thursday morning. They want Dr. Furman to listen to her....(He wasn't in clinic today.)

Afterwards, we made our weekly trip to Kroger to pick up some groceries, stopped into the Dollar Tree, where the girls picked out some baby bottles for their dolls, and a dry erase board to play with, and then came back here to the RM House. Kara did act pretty tired after the store today, but she seemed to perk back up after she got something to eat. They have met a little girl here who just turned 7, and is their playmate sometimes. There is an inside play area near the main dining room that the kids enjoy. Around all of this, there is also a brick landing that the girls step onto and sing. They wanted to go outside this evening, but they were already cleaned up for the night, so maybe tomorrow.....

Well, I will go for now - The girls are already in bed, and it's time for them to get some zzzzzz's for the night.

Meg