29 Jun 2008, 2:13pm EST
Hello-
This will be quick - We're getting stuff together for Tony, Lauren, & Brent to take back home with them. Erica will be staying with us this time. Mamaw & Papaw Lee are going home too. Mom is on her way here to help out.

Kara is doing great! We spoke with the doctor a little while ago. He said the other night he didn't think any of us thought she'd be getting out this soon. PRAISE GOD FOR HELPING US AGAIN! She is having some itching, a little bit of a rash. He thinks this is all related to the other night. He explained that everything in her body was "wide open", and compared it to a fire, and now she's "smoldering", and it will take a few days to get over this. The steroids and benedryl will help all this. Her vitals are awesome, no fever. They are taking her off of 2 of the antibiotics that she's been on, and switching to just 1, which is a new drug for her. Pray for no adverse reactions. She seems to be sensitive! If she continues to do so well, we are looking at being discharged if not Monday p.m., Tuesday !!!!! The moodiness will get better since they are weaning her off of the steroids. She should be completely off of these by tomorrow. We are very thankful for how well she has done through this. God is so good!

We were supposed to meet with her Oncologist on Monday in Clinic, but this will change now that she's inpatient. Hopefully we'll know more about when she can start her oral chemo when we meet again with him this week. I'm sure she'll be seen in Clinic on Thursday, if not sooner for a follow-up after all this!

I'll update more later. Pray for safe traveling, and continued healing....Thank you for all the prayers, messages, and checking in....

God Bless,
Megan

28 Jun 2008, 1:45pm EST
Things are really going well today. They are going to move Kara out of ICU and to the 2nd floor. Hooray!!!! Her vitals are good, her heart rate is a wonderful 80. ( I wish mine was so good). Her cultures are all negative. Her redness is better, but still there. Possibly they'll remove one of the antibiotics tomorrow, and maybe start taking her off the steroids. She is having her mood swings, she goes from grumpy to sweet. Right now Mamaw Lee has her laughing.

She does have a staff infection. This is a germ that we have on our skin. Most of the time we never have a problem with them, but if your immune systems is suppressed this can be a real problem. We are sooo thankful her counts were good when she got this. This is the one thing that we fear the most and is so dangerous, that's why if she gets a fever, it's an emergency. There have been too many children who don't pull through. One good thing is....they know now that is staff , and not a strep bacteria. Strep will cause damage to the lungs and heart. This would have been worse. Thank God she didn't get that. We appreciate all the prayers that have gone up for Kara and all the sick children. Kara and Brooklyn are still with us, they are tough little girls. They are able to control Brooklyn's pain with patches now, please pray for a MIRACLE for her and so many others with these horrible cancers. I doubt that we'll update tomorrow. I'll be on the road and Megan will be at the hospital. Pray for safe traveling for us all, as Tony will be coming back. I don't think I've told this, but the last time I was on my way home and Tony was on his way to Memphis, we saw each other on the interstate. We were both in traffic but we both started honking, people probably thought we were nuts, but it was cool. I called them on the phone, but the line was busy, cause Brent was calling me at the same time. It excited the kids and Ole' Mamaw too! Maybe I'll see them again tomorrow, hope so!

God Bless,
Mary

27 Jun 2008, 10:20pm EST
Hi, Good news!!! The doctor thinks Kara is over the hump now. Praise God!!!!

She actually asked for food and ate 1/4 bowl of cereal and 1/2 corn dog. She is completely weaned off the dopamine and her blood pressure and heart rate are staying normal. Her fever is gone also. Megan said her skin is blotchy and her eyes are weak looking, but she's had a rough last 24 hrs. She has been painting and playing, so this is wonderful!!!

Tony says if she continues to improve he'll come home Sunday and go back to work. If something happens he won't leave her. We expect everything to go smooth and be able to come back so I'm making plans to drive to Memphis on Sunday and stay with them. The Dr said if she continues doing this good, they could be dismissed from the hospital Monday or Tuesday, but she'll have to stay on the antibiotic for 10 days.

God has shown His Grace one more time!!! Thank you sooo much for praying. Megan said keep praying, we want her to continue to do good. Oh, Brooklyn came home from the hospital today. They got her pain under control and her fever is gone! Hooray for Brooklyn!!!

Have a great weekend and God Bless you,
Mary

27 Jun 2008, 1:04pm EST
Megan just called and Kara is holding her own pretty good. Here's her vitals as of right now.

Her fever was 103.3 last night and it's now 100.0, they are giving her another dose of Tylenol.
Her blood pressure was 98/30, it's fluctuating and now 107/61.
Her heart rate was 160, it's fluctuating and is now 154.
Her counts are still good, but they are dropping from last night. She may need some transfusions before too long. Oxygen in good also.

The nurse called in the Dr's last night, because her eyes were rolling up and she was acting odd. This is the way she acts when she's coming out of sedation. They got her awake and then she seemed fine. She just did this again now. She is awake and better and watching cartoons and talking, so that's good. She received 3 bolus' of fluids last night, this helped with the blood pressure. They are keeping a very close eye on her. Thank God they were in Memphis and not here, or on their way home when this happened.

They have her on (excuse my spelling), Lanazelit, an antibiotic. She had this in transplant and had a reaction. She looks good, but is red with a rash now. They are giving her hydrocortisone.

They're giving her Dopamine, to regulate her pressure. They are trying to wean her off of it now. She was on 16 mikes, now she's on 10. The max is 20 mikes.

Brent is still asleep. The childlife workers are ready to help with him anytime. They did take him down last night and got him a snack. They can play with him and take him to eat, they're ready to help in any way they can.

She's not out of the woods yet, but her body is responding well and they are dealing with the infection. Pray they can stay on top of it. They may not know exactly what she has for another 24 hrs, but thank God for what they can do. Pray that God continues to guide them through this, and He keeps protecting Kara. This could be worse, thank God she's responding well. I'll let you know when I hear any more. Thank you for praying, God is hearing our prayers!!!!!!!!!!

God Bless you.

27 Jun 2008, 12:13am EST
Things can change so fast...................
Megan just called and the doctor said it's a true infection. It seems to have started in both lines, (her buddy), the direct lines in her chest. It's a bacteria like we would have on our skin, but it's gotten into her blood stream. They have moved her to the 3rd floor, ICU, she is not in ICU, but she's in a step down room. This way she can have better care from the nurses. Her fever is going up and her blood pressure is dropping. They may give her more fluids to bring her blood pressure up and are giving her Tylenol for the fever. The 1st 24 hrs are critical. This is when the bacteria dies and releases toxins. This is serious, but he believes he can get this turned around, they started an antibiotic last night, and this was as soon as they thought there might be a problem.

Tony and his parents are leaving as soon as Tony gets off work in the morning. Mike & I may also go, not sure yet. Only 1 person is allowed in the room with Kara, so Brent is in the next room by himself. There is a window and a speaker, so they can communicate. He has a bed & TV and restroom, but this isn't the ideal situation for a young child.

I'll try to keep everyone updated. No cell phones are allowed in Kara's room, so I may not hear much from Megan until Tony gets there. Just keep us all in prayer. God is able to move and heal her little body, he is mindful of us, and He's in control.

God Bless,
Mary

26 Jun 2008, 9:55pm EST
Megan took Kara over to the hospital to get her antibiotic tonight and they told her that they'd been trying to call her because a bacteria was growing on one of Kara's cultures that they took last night. They think it's a strep or staff infection. They think her rash looks more like it could be strep. They're admitting Kara for at least 24 hrs. The 1st 24 hrs will be to find out what bacteria is growing, the next 24 hrs will be trying to find an antibiotic that will work against it. They started her on Vancamiacyn tonight, and she's allergic to this, so they have given her premeds. Megan & Brent left her with a nurse while they went to get some clothes and she had a reaction while they were gone. Megan said they stopped the meds for a little while and now they're starting them back up again.
Her counts are still good and her fever is low grade, and it doesn't last long at all. She's still chilling and feels warm though.
Please pray that this doesn't get serious!!! Pray also for traveling mercies for Tony, Butch Vonda and Erica & Lauren. They're going to Memphis tomorrow.
Who knows where she got this, it's so hot, and I think bacteria's grow more in the heat. I know Megan uses a lot of sanitizer, and bacterial wipes, but it's hard to escape it when it's everywhere...............this journey gets a little bumpy sometimes, but God can straighten it out. We are blessed to be able to call out to Him in prayer knowing He hears the prayers of the faithful. He's is truly wonderful!!!

Remember Brooklyn Durham also, she's in the hospital again with a fever and pain also.

God Bless,
Mary

26 Jun 2008, 3:51am EST
Hello - I know it's late - I mean early, but we made a trip to the Hospital 2-nite. We are back at the RMH, and both kids are conked out right now. Thankfully, we don't have to be at Clinic until later on in the afternoon. Kara started freezing in her bath 2-nite even though her water was warm. She had prickly chill bumps, too. I waited a little bit after her bath to give her body time to give an accurate temp. It seemed a little elevated, and she felt a tad warm. I took it a few times, both orally, and under her arm, and pulled out the "When to Call" sheet from St. Jude, and thought it best to call the Hospital and explain to them the situation, and have them tell me if we should come in. They wanted her to come on in. Well, her vitals were good - no fever, even though she was still warm to the touch at times when we were there. She still complained at times that she was freezing, too. They drew labwork, and her ANC went up from 2000 on Monday to 3900 today! Her white blood cells were 5.1, hemoglobin still good at 13.1, and her platelets had risen to 126,000. I questioned whether the rise in her ANC indicated an infection, the Dr. said no, and showed me one of her markers in her chemistry that indicates infection (CRP) was at a normal level. This was good to hear, and they ran an antibiotic through both of her lines, just to have her covered, and ordered a urine culture. We were able to come back here. (Normally, you don't have to be admitted with a fever if your ANC is above 500.)

I was wondering too, if maybe she just didn't get a little overheated from the Zoo trip. She will still be seen in Clinic tomorrow. I'll plan on updating again tomorrow evening. Right now, I'm going to bed!
Megan

25 Jun 2008, 10:05pm EST
Since we didn't have any appointments at the Hospital, we decided to do something fun today. We started off with the laundry (not fun :), then lunch, and a trip to the Memphis Zoo. We stayed a while today, and we were able to see quite a few animals. We watched the polar bears wrestle in the water, and watched the sea lion show. I think this ended up being Brent's favorite of the day. We road the kiddy train, and saw the farm animals. The kids got their feet wet in an area that's set up towards the entrance that the kids can play in, with a couple little wooden walkway bridges, too. We were able to see a lot of the exhibits before we were getting tired and ready to call it quits for the day. It was pretty hot today, too! I think the car read 91* when we left, and that was around 5:30 or so!

When we got back to the RMH, 'Ali's Way' was serving supper. Ali was a girl treated at St. Jude that had Neuroblastoma, (the reason for the name.) She has since passed away, but the group faithfully serves a meal, I think about once a month, for the families at the RMH. This is just one of many groups that cater-in here. Kara & Brent both wanted to go eat, but when we sat down, Kara gagged on her oranges. Her eating has really tapered off since lunch today. I'll be glad to see the day when her eating really takes off!

Brent has been a great big brother for Kara this week. I've noticed him trying to encourage her to eat this week, and he's rode her around on his bike while they've been outside playing. I've been putting mousse on Brent's hair, and Kara's been so cute. (I failed to mention that Kara's eyelashes are fully in now, and her hair and eyebrows are coming in again.) She's got quite a shadow on her head now. It's all dark, too. What I was getting at, was that she was putting mousse on her head, brushing her head with a hairbrush, and asking for hairspray. I went along with it, and sprayed hairspray. She thought she had to spray some, too. Bless her heart, she'll be so happy when she gets enough to really brush!

Tomorrow, we have a 2 & 3 o'clock appointment for triage, and to meet with her Dr. Hopefully we'll have a better idea of what's how our next couple of months will go. Please pray her eating gets better, and that her cancer leaves for good, and that nothing is growing in her little body.Please keep remembering Brooklyn and all these Children that are fighting cancer.

Well, it's time for baths, and I need to finish reading the oral chemo papers before tomorrow. Take care, and God bless....

Megan

24 Jun 2008, 8:12pm EST
Hello from the Ronald McDonald House! We finally are connected to the internet again!

Today we really got a surprise - we found out that YESTERDAY was Kara's last radiation treatment to her abdomen. The total percentage of radiation that she was to receive to her abdomen was given (this included the "boost" also), but it was completed sooner than we were expecting and originally told. This was good news, though! Her tummy on the outside looks good. She is starting to have some loose stools - nothing major. This is to be expected, along with the appetite loss. She has ate a little today. Her eating should improve in a couple weeks from what I'm told. I am so glad she doesn't have to fast in the mornings anymore during the week. Hopefully her appetite will recover quickly! You always worry when your child doesn't eat very good. Today, after we left the Hospital, I told Kara she could eat whatever she wanted now, and her face wrinkled up like "Ugh!" Well, I was headed somewhere to eat, and Brent chirped that Kara said she'd eat if we went to Chuck-E-Cheese. So, that's where we ended up, and she did eat! Her tummy must not feel the best, even on Zantac and Zofran, because later today when I was getting her milk, she said for me not to give her too much, in case it would hurt her belly. Her runny/stuffy nose doesn't seem to be any worry. It seems better today.

Her labwork also was a surprise - her hemoglobin was within NORMAL range, and her platelets were good, and her white blood cells were also GOOD! She was starting to look dark under her eyes yesterday, so I'm glad for the good lab report today.

Yesterday was so busy, so I'm glad today has been slower paced. Each day the kids have wanted to play outside, mainly ride bikes. This is a lot of fun for them. We didn't stay out too long today because of the heat. We'll probably head back out later this evening after Kara wakes up from her nap. She's getting her 2nd wind right now!

Today, Supercuts came here and offered free haircuts for whoever needed one. They try to come each month. Brent took advantage of this today, and I was thankful for them! His hair grows so fast! He almost went back to a buzz cut, then at the last minute decided to stick with a trim.

We don't have to be back at Clinic to meet with her Oncologist until Thursday. We met with him yesterday, and we are hoping to have more of a concrete gameplan for the next part of Kara's treatment. I was given a booklet to read about the oral chemo Kara will be taking, and I need to sign a consent this week before Kara starts it. Her Dr. was talking to us about the next step. I hope to be able to update with a definite "plan" for the next weeks ahead - soon. We will probably have to check back in at St. Jude in the 2-month period for labwork, and also a weigh-in. This will give them a better idea of how she's getting along, than just talking about it over the phone, or her checking in at a different facility. They've been treating her a year now, and it would be in Kara's best interest to check back in with her Clinic here in Memphis. The "check-ins" may only last a day, here and there. We'll see on Thursday. I'm really hoping something is decided by then!

Please keep praying that God's perfect will be done, and that her cancer isn't growing, and that she gets completely healed of this disease. There's days that I think, "How much longer?" "When is there an end to this?" I should keep thinking of the good that God has brought our way, and thank Him more. He is faithful and has definitely helped us, met our needs, even wants. He is a good God, and worthy of honor, glory, and praise. I just want to see the finish line in all of this. I am hoping that Kara will continue to get better, and more radiation won't be needed. Please keep praying for Brooklyn, too. She needs a miracle.

God Bless,
Megan

23 Jun 2008, 6:48pm EST
Hi everyone, Megan just called and they moved into the McDonald house just fine. They have been busy settling in and Brent & Kara love the playground. Since they're last stay in Dec., they have added new bikes to the outside toys, and some have training wheels. So the kids are really enjoying themselves.
Megan doesn't have a password yet for the internet so I'll be doing the updates until she gets set up, which should be in a day or so. I"ll be glad when she can update in her own words, she can tell about their days much better than I can.
Kara is in radiation right now and Megan & Brent went to the cafeteria to get a bite to eat, and pick up a snack for Kara. They have enjoyed playing in the chili building play area while waiting for them to call Kara in for treatment. This is so much nicer, than being in isolation. Thank God for clear cultures!!! Then they'll go to their clinic appt, they'll see Dr Furman and get the results on her lab work that was done this morning, Also, discuss the runny nose that Kara has developed, please pray that it's nothing to worry about. Also, pray that her appetite improves, she isn't eating much and has lost a bit of weight, even with the IV fluids that she gets each night. This is to be expected when your stomach is radiated, but she has 4 more treatments and we know God can help her appetite through these last few days. Pray her blood counts are good too.
Erica left today for church camp, pray she enjoys herself and gets the spiritual help that she needs. This is all structured for the children, so lets pray that God really blesses them this week. Lauren is @ home with daddy today. Tony has 1 day off, then he'll go on nights for 3 days, then he's off 3 days so they'll all go to Memphis for a short visit. What a crazy schedule, huh? It's hard to keep up with, but we're thankful that they've worked with him so well during Kara's illness and kept him on. Not many places would have done this for an employee. As Megan says, God is mindful of us, and He does take care of our needs. We have so much to be thankful for right now.

God Bless,
Mary

20 Jun 2008, 11:20pm EST
Well, we came to a conclusion on who's doing what...I'm sure Erica will be tired of traveling by the time next weekend rolls around! Brent is staying here in Memphis with Kara & me. He should be good company for us! Erica is in Indiana with Brooklyn, Mamaw & Papaw Lee visiting family. On Monday, Erica will be going to Church camp in Richlands, VA with Aunt Darla, and cousins Austin, Amanda, & Bryanna. She'll be going back home on Wednesday. Lauren is spending time in Dandridge with Aunt Dina, Uncle Duane, Skylar, and my parents. When I talked to Lauren earlier this evening, she was helping Mom, but hardly talked to me. She was too interested in getting to frost a cake to talk. She says she wants to be a Chef when she grows up. I guess that sounded like more fun than talking to Mommy!

Next Friday, Tony, Erica & Lauren will be coming back into Memphis to visit for the weekend, and when Tony goes back home, he'll be taking Brent & Lauren back with him. Then, Erica will stay with Kara & me.

Today, Brent & Kara both had a good time playing in the playroom. There seemed to be quite a few kids in there today. Her radiation was behind schedule by 1 1/2 hours, but it went smoothly. Kara seems very tired this evening, and she's not wanting to eat much. I'll have to keep a watch on how she does this weekend. Last Monday, she was already needing a blood transfusion. Makes me wonder what her blood counts are. Yesterdays labs were to check her chemistry, not her blood counts. Her chemistry levels were all pretty good. She is still on i.v. fluids throughout the night.

We found out today that we have an appointment at the Ronald McDonald House tomorrow, at 11 a.m. to move in. The kids really enjoy this place. There is a lot more for them to do there. Lauren will really be glad! There for a while she was talking about it often. I know when I told Erica she seemed happy about it! I am looking forward to getting Kara's handprint painted on the wall in the kitchen. Whenever kids leave the Ronald McDonald House, they get their own space to paint their handprint on the wall and write a little info. about them. Which leads me to explain..........

Both of Kara's Dr.'s have talked, and came to a conclusion about her treatment for now, and I have to say that Tony & I are at peace with the decision.... Kara will finish her radiation treatment on her abdomen and will go "home-home" for about 2 MONTHS!! During this time, she will be on oral chemo (Retinoic Acid). It's a form of Vitamin A, and is supposed to work in changing the cancer cells into more like normal cells. It doesn't work like previous chemo to "kill" the cancer cells, but it is a systematic form of treatment, where radiation is effective, but works on certain areas. When Kara returns in 2 months, she will have an MIBG scan to see if there's been improvement. The next step will be decided after this scan. They will determine if more radiation is needed at that time. This is also giving Kara's bone marrow a break from radiation treatment. Hopefully, Kara's scans will continue to improve, and I know by God's grace & healing power this is possible!

Our Children are happy with this news. I told Brent that this year I could go with him to pick out his school supplies. He seemed happy about this, and before we know it, school will be back in the schedule! I am excited that we should be home for annual Church Campmeeting this year. It's something that we have every year during the Summer, and it's always good! I wasn't able to be at last year's meeting, so I'm looking forward to what God has in store! What perfect timing for Kara to get a healing touch!

Tony & I were talking yesterday about trusting the Lord in this. I know this is what we're supposed to do. It's what God wants us to do. He asked me, "What do I do when I trust someone with our kids?" He was encouraging me not to worry, to entrust Kara with the Lord, and enjoy our time at home this Summer. God's got it in control, and I do have to say I don't feel like I did last week. The past few days I have been better, and like I said, we are both at peace with the decision that was made.

Well, I hope this finds you all well, and blessed. God is good, and is definitely mindful!

God Bless,
Megan :)

18 Jun 2008, 5:59pm EST
Hello all! After almost 6 months, KARA IS OUT OF ISOLATION!! Whoo Hoo! We found out 1st thing this a.m., so on our way over to the Chili Building we let Kara check out the hallway in front of the cafeteria. Then, she checked out the play room and had fun in there before her radiation started - no more hanging out in a clinic room before radiation - Yay! We found out that radiation was going to be delayed for a while, so we headed back over to the main Hospital building, went down to the basement to take care our living arrangements (getting out of isolation means we will have to move out AGAIN, either into a different room here, or into the Ronald McDonald House. The move may be tomorrow. We also went into the gift shop and the kids picked out some candy. Radiation went well. Tony wanted to be with her during sedation & recovery today. I guess I can't describe it well enough what it's like when she's sedated. She's SO sweet right before she go es under, and it happens so quick. Sometimes it could bring tears to your eyes. The line Nurse removed Kara's stitches today from her central line while she was asleep. After she woke up, she didn't want the normal peanut butter crackers, and apple juice. Tony said, "I know what she wants, the cafeteria." Her eyes perked up, and that's where we went. She ate pretty good. Ever since Monday p.m., while she was getting her blood transfusion she has perked up, and she is eating decently. I never heard the results about her sugar level yesterday. They just wanted to see what her sugar level did after she had been on the fluids. Hopefully, it was fine. She will have labwork tomorrow, and also radiation. Next Friday (27th) will be the last day of radiation to her abdomen.

Please keep praying that God's will be done about Kara's treatment. I guess my fear is not doing the right thing. There's a lot to consider with Kara. Radiation has side effects, so we don't want to be too harsh, yet, I have that fear of not being aggressive enough and giving her cancer an advantage. Where is the happy medium? Then there's the issue of Lauren. If needed, later on, if Kara's white blood counts stay down and have trouble recovering, then we could boost Kara with Lauren's stem cells. (Radiation lowers blood counts, so how much radiation is too much radiation, and how much do you push her body with treatment without taking too much risk.) We just need your prayers that the right decisions are made, because God knows exactly what's going on & what's the right thing to do, even when I don't know exactly what we should do. (I have enough trouble making small piddly decisions, let alone something tha t involves Kara's life.) Please pray for Kara's Dr.'s that God leads them to make the right decisions. I know I should just completely turn this all over to God, and trust Him with it all. He is in control, and could heal her in an instant.

Tomorrow Tony will be leaving again. We have been trying to decide this afternoon which children are staying here with me & Kara, and which children return to Dandridge. We've talked about letting Erica stay this time, and Brent & Lauren going with Tony. Then, next time, letting Brent stay & Erica & Lauren going home with Tony. I think we have a plan, but we'll see. We're still talking about it. However we decide, please pray for safe travelings!

17 Jun 2008, 4:48pm EST
Well, Kara's chemistry was checked again this a.m., to make sure the fluids were balanced right. Her chemistry levels were all fine, and they want to check her glucose level in a half an hour (since she is disconnected from the fluids right now), to make sure that her sugar level isn't too low. She is on D10, which is 10% sugar along with her fluids and potassium. This was ran over 14 hours, and it will continue to be ran in a battery operated pump over 14 hours, but they want the pump to taper up her rate, and then taper down her rate to prevent hypoglycemia.

We "tenatively" have another negative culture! We are really hoping it stays negative so Kara can get out of this isolation!!!!

She has acted so much better today! She is playing right now with Lauren. It won't be long & Tony, Erica, & Brent will be in town until Thursday. Mom headed back home today for a few days.

It's seemed hectic around here a little bit. I NEED YOU ALL TO BE PRAYING, PLEASE! We had a good talk with the Radiologist today. We talked to him about some concerns. He meets on Wednesday's with Kara's Oncologist and I just want everybody to PRAY, PRAY, PRAY that God's will be done in deciding the specifics in Kara's treatment plan. In my mind, it seems like in her scenario, there's a lot of different things that need considered, and I want every decision to be the right one, and God's will. I know the Dr.'s weigh out the pro's & con's, and I know God knows exactly what's going on in Kara's little body, and what's ahead when we can't see ahead, so PLEASE KEEP PRAYING !!!!!! THANK YOU !!!!

Megan

16 Jun 2008, 7:51pm EST
Hi, it's Monday and we are back at the Grizzly, it's been a long day and it's not yet over.
We need to call St Jude to see if Kara's blood is ready, she needs a transfusion since her hemoglobin is low, (this is due to the radiation ), but her ANC is good, and her plateletts are decent. Yeah Kara!!!
She sure worried us last night because she had gone over 8 hrs without going to the bathroom. We woke her up and made her drink apple juice until she went. This aggrivated her, but it was necessary. She hasn't been drinking much or eating much all weekend. She has lost a little weight in the last week, and her labworked also showed some of her chemistry levels were off. So, they are putting her on fluids through her IV tonight also. She will be having 12-14 hrs of IV fluids daily until her radiation treatment is done. This will offer her more of a balance to her chemistry levels, and give her calories, too. We can give this to her during the night, and part of the day so we won't have to drag the bag along with us all day.
We saw her oncologist, Dr Furman today, she has 2 negatives, one more to go!we are so excited. They took another culture today, and we may get out of isolation in a week!!! She may actually get to walk through the halls and see the cafeteria before this treatment round is over. We disscussed Kara's MIBG scan and if he remembered right the spots were subtle. This is hopefull, so we left maybe a little encouraged than last week. She's having her abdomen radiated now, they want to do her pelvis & knee next. We aren't sure exactlly how the schedule will go yet. There isn't any talk about radiating her right arm or her femur bones. Radiation effects the bone morrow also, (can cause blood cell counts to drop) and we don't want to raise her risk for infections, that can come when her white blood cells & ANC are low. We were talking just today how God has helped Kara this past year when the flu, strep, RSV, etc. were going around, how she was shielded from so much! We know our trust is in the Lord, He can do all things.
Tomorrow, Kara has another chemistry check to see if the fluids are balanced right, and a clinic visit with the radiation Dr., and then radiation visit.

Have a great night & God Bless.....
Mary & Megan

14 Jun 2008, 10:04pm EST
We let the girls sleep in, we usually have to wake them up early, and they were so rested this morning and in the best moods. Kara could eat and drink anything she wanted and she opened the cubboard an just grinned. She pick a slice of bread and some cookies, then she saw cinnamon bread and wanted that too, bless her heart.
Our webmaster, Jeff, sent us the link to the Pink Palace, so we checked it out and we decided we didn't think the girls would really enjoy it, we probably would, but their too small for this kind of a museum. Then we checked out another place, but decided it was more of what Erica & Brent would love to do, they were still too young. We knew they'd love the Zoo, but it was near 90. So we ended up going to a mall that had a glass elevator and a fountain where they could throw in pennies, they loved it. Then we went to the food court, (of course), and then Bath & Body. We bought them the lotion that sparkles and they were very happy about that. We saw the Photographer, Peter, from St Jude, and he said he's entering the picture of the twins in a contest and he will know in July if his picture wins. He's won 1st place for the last couple years, so we're excited. He said he felt the picture told a story. It's the picture posted on Kara's home page that will be entered. Then we ran into one of the Dr.'s and the pharmacist, the girls had to show them their sparkly lotion. They seemed impressed! We then went to Bennigan's and ate, stopped at Walmart, of course. Then we came back to Grizzly to nap, Kara is still asleep. We are wondering if her counts have gone down more, because she is tired more than usual, and she's been getting stressed easier the last few days.
It's almost 9pm, so we probably should get some laundry started. Remember us in prayer, have a great weekend and God Bless you all.

13 Jun 2008, 5:27pm EST
Hi, this is Mamaw Mary today......we're done for the week and we are so happy that we will have 2 days free from any appountments. We plan on having some fun. Just us girls this weekend and we'll do girly things for sure. We've never been to the "Pink Palace", and we aren't sure what it is, but we believe it's a museum and it has a something to do with a train. We'll find out though. I'm sure we'll find some time for cookies and shopping too.

Today was a new experience for me....Kara wanted me to stay with her while she was sedated, I was happy she felt comfortable with me. She does know when she about to go out, and she said "Good-bye Mamaw", I hardly had a chance to say "I love you", and she was out. She just completely relaxes, and it's very fast. I hated to walk out of the room and leave her with the experts, but they assured me that they would take good care of her. As always they were right, she came back to us just as sweet as we left her. She wanted chocolate cookies when she woke up, and that's what she got. We even had a carmel dip, but she didn't try it.

We had another experience this morning when we were walking to St Jude..........when they say don't walk on the grass, it's usually for a very good reason!!! That's what sidewalks are for...duh! Kara & I took a short cut and the grass was so wet it felt like we were walking on a sponge. We didn't know, but our flip-flops were splashing the water and mud, all up our backsides. Of course, we both had white skirts on. Megan went on to the the hospital with Kara, and Lauren & I came back to Grizzly and I changed, and took back clean clothes for Kara. Sometimes I think I'm more trouble than a help, but it was funny, and we needed a good laugh. We didn't get done until almost 3pm, so we're here @ the Grizzly and the girls are playing Barbies. They gave them each of them a new Barbie doll from the radiation dept. Firday is toy day!!! While Lauren was waiting for Kara the child services employee h elped Lauren make a Father's Day gift for daddy. She sent along enough stuff for Kara to make daddy something too. They won't see daddy until Tues., but it's worth waiting for!!!! Tony said today that Erica was really missing Lauren & Kara. They'll be coming with daddy on Tues too.

Happy Father's Day to all the daddy's out there. We really appreciate Daddy's!!! You are so special!

Remember us all in prayer and God Bless.

12 Jun 2008, 7:20pm EST
Well, our time with Tony, Erica & Brent came to a close this evening. We definitely stayed busy this past week. We tried to do a lot on the weekend, and of the evenings. Every other day when we had laundry to do, Tony was a big help (as usual) to catch this up, while Kara & I were taking care of her appts. There were 2 days that we let Erica & Brent take turns being with Kara during a Dr. visit. But, when it was time for radiation and sedation, they had to go to the waiting room, cafeteria, or Grizzly House with Tony. When Kara was sedated, we would all eat lunch together in the cafeteria. The new Kay Kafe' at the Hospital opened this week. So, we were able to try it out. Instead of just normal cafeteria buffet style food lines, there are different categorized food stations that you can go to, (including an ice cream station - I need to really check the menu out - but, I doubt they have any 'Humdingers' !! :) W hy does it seem like I always mention food when I update?!

Anyway, Kara is doing real good with her radiation so far. In the sedation room, right before Kara goes for radiation, she always has me hold her hand, and I tell her I love her. Today, they injected a little bit of the "sleepy medicine" in her central line, and she must have felt the effect, because she opened her eyes wide, and said, "I love you, Mommy" in her sweet voice, and closed her eyes. That medicine takes effect so quick! She relaxed, and I left the room. During her radiation, Mom arrived, so when I went in the recovery room, I told her we had a surprise for her. You could tell she was happy. When we left the Hospital, Mom, Tony, & the kids were waiting for her outside.

This evening, Kara was on her knees on the floor playing, and she came to me complaining of her legs hurting. (Here lately, I notice myself trying to figure out if she complains, if it's possibly tumor related, or a simple pain related to normal activity/position, etc. - I know I'm not the only one out there like this - but I need to keep thinking about how God's helped her, and our whole family, and concentrate on the thought of how she's improved!) Come to find out, it was from sitting on her knees, and then she was describing to me that her foot was asleep. I told her it was "asleep." She said, "asleep?" I told her yes. She said it was "sparkly" :) I thought this was cute. It wasn't long, and it was "awake", and everything was fine again!

Hope you all have a great night. Tomorrow is Kara's last day of radiation for this week. Monday, we'll be back in the routine again! We have 6 treatments down, 11 more for her abdomen. Please remember Kara in your prayers, along with Tony, Erica, & Brent traveling, and all the people out their battling diseases & illnesses!

God Bless,
Megan :)

After I updated, I remembered something funny Lauren said at lunch today. Erica talked to Mom, and she told her where she could find us at. Well, when Lauren found out, she said (after Mom had only been away for 4 days), "I forget what Mamaw looks like. Oh yeah, she has gray hair!" Funny what kids say sometimes. :)

10 Jun 2008, 4:48pm EST
Kara's red blood cells count was the same (11.4) as last week. Her white blood cells (2.5), ANC (1700), and platelets (183,000) all dropped some. They are all decent numbers. She will get another culture tomorrow to test for VRE. We need 2 more (2 more weeks testing) to get out of isolation! One day this week, the line nurse will come & remove Kara's stitches (during sedation) from her central line surgery that she had b-4 transplant. They don't seem to be bothering her; it's just been long enough now that they can be removed. Kara did fine with her radiation treatment again today. 5 down, 12 more to go (for her abdomen.) Her Radiologist said she seems to be tolerating it well.

Kara's Radiologist gave us his decision today. He reviewed her last MIBG scan. It DOES show a faint spot of disease on one of her upper arm bones. So, the scan ISN'T completely clear above her abdomen. To my understanding, he WON'T be radiating on her arm OR Kara's femurs. She will finish her radiation to her abdomen, then have a 1 week break. When we return to St. Jude after this break, he wants to concentrate the radiation on her knee area, and her pelvis. This will be a total of 3 sites: abdomen, pelvis, knee. He doesn't want to radiate on her arm or her femurs because he said she has shown improvement in her scans from previous chemo, and he doesn't want to cause damage/toxicity by radiating those spots too. She will be getting another MIBG scan, and this offers some radiation each time it's performed. Please pray that the untreated spots DO NOT GROW, and that her cancer keeps deteriorating until it's COMPLETELY GONE! In he r treatment plan, she will also be taking oral chemo (this can be taken at home), which should help the lingering Neuroblastoma cells to change/mature - & hopefully go away! We are thankful for how God has helped Kara over this past year. Please keep praying - PRAYER WORKS !!!

Megan :)

09 Jun 2008, 4:23pm EST
We had a great weekend together. We ate a meal together at a great restaurant, and the kids were happy that the 'Balloon Man' was there, too. We ate there another time with all 4 kids when he was there. Brent walked in ahead of us, and came back to us saying, "The balloon man's here!" They each got to choose a type of balloon they wanted him to make for them. Lauren & Erica picked out Princess crowns that they could wear, while Brent & Kara picked out a dangling fish on a fishing pole. Kara's fish, reel, and pole were all pink - just like she wanted! We also were able to take the kids to Mudd Island water park. This was the first time Erica & Brent have gone with us. We took the monorail over to the museum. The kids had headsets to listen to, as they walked through the exhibits. The museum is about early steamboats on the Mississippi River. They were able to walk through a partial boat exhibit. That was probably the neatest part inside. Towards the e nd of the museum there is a catfish aquarium, and then when you exit, there is a replica of the river that is probably 4 blocks long or so. So, we let the kids cool off and get their feet wet in the water. Afterwards, we took a horse -n- carriage ride around downtown Memphis. Erica & Brent hadn't experienced this either, but it was so hot, and we were all pretty tired by then. We grabbed a bite to eat, and afterwards grabbed dessert, and we were cracking up laughing at our desserts. I was in tears, I was laughing so hard. We tried a place we had never tried before, and Kara wanted a banana split. They gave it to us in a plastic cup, all blended together with a lid on it! Brent & Tony ordered what we would call a flurry or a blizzard, or a blast. At this place, they were called 'humdingers'. Maybe we were all slap happy, or something, but we were cracking jokes, and laughing. It was good for us all.

Today, Kara had a clinic visit. I thought they were drawing labs for a complete CBC, but they only checked her chemistry levels today. They all were within perfect limits. Friday's recovery after radiation was a lot better than the day before. We tried using her 1-time daily dose of anti-nausea medicine. She only complained once with her tummy. I'll be doing this everyday before radiation. Today she was pretty tired in recovery, but she's doing fine now.

Tomorrow, Kara will have her blood counts checked. Tomorrow will mark the 1-week mark from her last VRE culture, so it should be done again. Good news is, last week's culture showed "Negative", we need 2 more to get out of isolation! Kara said when she gets out, she can go to the Cafeteria - (of all things to look forward to!) She will also have a Radiologist visit, and radiation. Today we were done around 1:30. Tomorrow will probably be about the same time. Her Oncologist & Radiologist has her check in 1 time a week, to check up on her, and see how things are going.

Thank you for all the messages, and prayers! We appreciate them! We need you all to keep praying for Kara. April 5th was her last dose of high-dose chemo. Dr. Furman said that radiation is part of the transplant process. Radiation is supposed to be effective against Neuroblastoma. Her radiologist said 4-6 weeks after transplant is normal to begin radiation. I was thinking it was around 7 - 7 1/2 weeks after her transplant date that she started radiation, but it was more like 8 1/2 weeks. Right now, they're just radiating her abdomen area. So, in the meantime, there are other spots that aren't being treated. I need to remind myself "there was an IMPROVEMENT, and her last MIBG showed A LOT BETTER" than the previous scan, and that God has shielded Kara from a lot during her treatment, and HE IS STILL WITH US - THAT I'M SURE OF & HE IS STILL HELPING ALL OF US! Just pray that the spots that aren't being tre ated with radiation at this time, aren't growing !!! I probably shouldn't worry, since her last scans showed improvement instead of growth, but please keep praying that Kara's cancer keeps getting reduced until there's nothing left! I know God is able! I'd like to get rid of this disease fast!!!! Well, I've typed enough for now. Hope I didn't wear you guys out reading this.

Remember our youth group from Church - they are at Youth Camp in Illinois this week!

Megan :)

06 Jun 2008, 11:15pm EST
Thank you for all the Birthday wishes! I know Mom knows you 'reap what you sow', so, it should be no surprise to her if her age is posted on here this year when her B-Day rolls around! :)

Today Kara had a better time after recovery from her radiation than yesterday. She didn't get sick, though she did complain once with her tummy. We did give her a one-time daily dose of anti-nausea medicine before we headed to the Hospital this a.m. I will do this everyday that she has radiation from now on!

We were finished at the Hospital at 1 today, and Kara said she wanted those delicious sugar cookies and pizza from the mall to eat when she woke up. That is where we ended up. We went in Bath -n- Body works, and the girls had a time! Who would have thought two 4-yr. olds would enjoy that store so much? They each had their own bag to put their shower gel & lotion in, and the sales lady took them over to a "new arrival" which was scented body mousse that makes a crackling sound. They really liked this! The sales lady showed them, then I put some on them, and of course, they had to show Mamaw how neat it was! We also rode the carousel a few times, and afterwards they got some cotton candy and a couple of balloons. We shopped around in a few stores, and ended up at Wal-Mart getting some groceries. The girls have enjoyed playing around here at the Grizzly House. They're both in their p.j.'s with their open-toed sandals that have a pump heel - (Lauren h as sport socks on with them! :), Kara has her purse, they both are wearing their scented lotions, & they're snacking again!

Please keep praying for Kara, that this radiation will be very effective, and that the Dr.'s make the right decisions about whether or not to radiate in more places than just her abdomen area. It would be great if it her cancer would just go away on it's own, wouldn't it?! But, Kara is better than what she was a year ago, and God has helped her so much through every step of her treatment. He has helped our family through all of this, and proven Himself faithful in our lives. How can we not trust Him with this? He has been so good to us...Well, I hope you all have a great weekend. We are planning on catching up on laundry tomorrow, and enjoying time with Papaw Mike, Tony, Erica & Brent when they get here! I talked to Erica 2-nite. She usually dreads the drive here, but she talked like she's ready to come tomorrow! Thanks for checking in, and please keep praying for Kara!

Megan :)

05 Jun 2008, 5:59pm EST
Today was very busy and informative. We got yesterday lab results, then met with the radiation Dr. He was very good to explain what is happening to Kara and answering many ?'s for us.
The labs were good her ANC is 1800. Her other counts are also good too.

Dr. Furman said this last MIBG scan was much better than the one before transplant. PRAISE GOD!!! She still has residual tumor where the primary tumor was, (abdomen area). There are still a lot of spots, but she had a lot when she came. It's expected, he wished they had a medicine that could take it all away. They will repeat everything, (scans), again after radiation is finished and before oral chemo.

The radiaologist said, there is no sign of any tumor above her abdomen area at all. PRAISE GOD!!! They are going to concentrate at this time on radiation in the tumor bed area, (abdomen). She will be getting a total of almost 36% radiation during her 17 days of treatment which started today. This is a higher % than originally planned. They don't radiate on weekends so June 27th will be the end of the 17 day treatment. Whether they radiate the femur bones is undecided at this point. This will be discussed with the team of physicians, and they'll decide what, if anything, needs to be done to the femur bones.

She got sick after her treatment today and they believe it was from the sedation, so we are giving her some meds before sedation to help prevent the upset stomach from now on. Another option is giving her glucose fluids by IV to help while she is fasting. We are trying the meds tomorrow, and if this doesn't fix it, we'll do the IV fluids next week, and see if that fixes it. She's eating and feeling real good now.

It's one year ago today since her diagnosis, and she is sooo much better today than a year ago!!! Thank You Lord!!! Please keep praying that he finishes the healing in Kara. We can look at this last year and see His goodness and faithfulness. We could mention numerous times that He has worked things out perfectly!!! He in definitely mindful!

God Bless!

P.S. After reading the original update for today, we realized that we need to clarify something about the spots. The radiologist mentioned that the femur bones shows evidence of disease. Also, a lesion showed up above one of her shin bones. At this point they're only concentrating radiation on the abdomen area. As we said, they'll all talk and decide at a later date if they feel like they need to radiate elsewhere.

04 Jun 2008, 6:11pm EST
This is Mamaw Mary today........Hi, everyone! We don't know anymore today than we did before. We are scheduled to see both the radiologist and her oncologist tomorrow. Today her schedule was changed around some, they did labs, and sedated her and marked her skin and lined her up (again) on the machine to get ready for the actual radiation, which starts tomorrow, instead of today. This was all behind the scene stuff. We will know all about her last scans tomorrow when we are at her clinic visits. We are scheduled to be at the hospital from 9 am till 4:30pm. A very long day, huh? Next week they are planning on moving her radiation time up, so she won't have to go as long without eating. We're going to the grocery now because Kara says our fridge is EMPTY. We can't have that!
Keep praying for all of us here, Kara, family and all the other children in treatment. We will bring you up to date tomorrow after all the appointments. God Bless!!!

P.S. Tomorrow is Megan's B-Day! She wouldn't want me to tell you, but OH WELL, I did anyway!!!! How can she be 31 when her Mama is only 29?????

03 Jun 2008, 11:30pm EST
We have arrived once again - we are settled & getting ready for bed. The girls did a lot of laughing in the car on the way here - typical silly stuff that makes you laugh right along with them. Tony returned to work Monday, so Erica & Brent are staying with Dina & Duane, Brooklyn & Skylar, and spending time with Mamaw & Papaw Lee, too. Mom was able to come back to Memphis with me & the girls. Dad will be coming in with Tony, Erica & Brent this weekend, when Dad & Mom will go back home. Tony, Erica & Brent will be able to stay here with us all the way through next Thursday! I am really looking forward to being together as a family again.

Here's Kara's schedule for tomorrow:

11:30 labwork check
2:15 radiation treatment with sedation
3:30 recovery

Please keep praying & please keep remembering Brooklyn & her family in your prayers. Her site address is : http://www.caringbridge.org/visit/brooklyndurham.

Thanks & have a great night,
Megan

02 Jun 2008, 9:22am EST
I thought I'd try & update before we head back to St. Jude this Tuesday. When I called them Friday, to reserve our room at the Grizzly House, I was surprised to find out her radiation date had changed. Kara will have a lab check & radiation with sedation on Wednesday. She will be seen by her Oncologist on Thursday. One of those 2 days we'll get the scan results. Mom & Lauren will be returning with us this time.

Since we've been home, it's been very busy, but it has been a needed break for us all. Kara has laughed so much! She had mentioned in Memphis that she wanted to go to Pigeon Forge & have a bonfire. Tony told her we would. So, we were able to do both while we were home. She rode the skylift in Gatlinburg & was as brave as they come - Can you believe it ?! Another night, we grilled out, and made smores. The kids were playing hide -n- go seek and riding bikes. We had another cook-out at Mamaw Lee's house another day. Kara enjoyed driving in her Princess car while we were there. There was one night she rode it that she wrecked into Mamaw's car, hit me, and almost hit a tree. Lauren was riding with her, and said that Kara was a "good" driver! ?!?!?!?! The kids have played, played, and played some more.

I was able to visit with a High School friend who was in town, and also with my Brother, who I hadn't seen since before Kara's transplant. I had been wanting to get a family picture taken, so we got that accomplished, and we also made it to Church last Wednesday & yesterday night. God has been so faithful to us, and He again showed up and blessed & helped us. It's always so refreshing to be back in God's house, and He always come by when you need Him!

I hope to update more often once we get settled back in at the Grizzly House. Please keep praying for Kara & still remember Brooklyn. As I sit here, thinking of all the ones out there battling different types of illnesses, I keep coming up with a new name to add. I'm not sure if everyone I'm thinking of would be comfortable with their name posted on here, so I'd just like you to remember EVERYONE out there battling! God can come along & help, encourage, bless, & heal.

Have a blessed Monday!
Megan

I forgot to mention in the first update that Kara's off all of her medicine's, except her ongoing antibiotic she'll take throughout her treatment time! We were all so glad to know we could stop the other med's. (They were waiting until her counts recovered on their own.)