28 Jul 2008, 11:47am EST
Hello! Just another quick update. Kara is enjoying her time away from the Hospital! She does have to do a quick blood count this week at Children's to prepare for next week's chemo. Can you believe next week starts the beginning of Rd. #2 oral chemo ? I'm not looking forward to the side effects. Her skin is much better now. You should see how her hair is coming in! A friend from church mentions that everytime she sees Kara, she thinks it has grown some more! It is dark, and it is growing fast! I hope it continues!

Everyone is getting better with their colds, but we headed to Church last night, almost made it, only to have Lauren get sick about 2 blocks away! We ended up turning around, going back home, and getting her bathed & cleaned up again! All that ended up being caused from Brent clowning around, then the laughing, coughing, and drainage didn't go well together, making her get sick. I know kinda gross, huh?

We have some errands to run tomorrow, and a busy week ahead of us again, carrying over to the weekend.

We were glad to see Tony's Aunt and cousins again this past weekend. It had been a few years since I was able to visit with them, and we had a few laughs together. Well, I better run.....

Megan

24 Jul 2008, 10:04am EST
Well, we had an eventful yesterday! Tony came in from work yesterday a.m., telling me he thought he had a sinus infection, and he had been freezing at work. He wanted woke up around 3 p.m., so when we woke him up, he was still running a fever. He was seen in a local clinic, and they weren't sure if what he has is viral, or bacterial. So, for Kara's sake, they prescribed antibiotics. Afterwards, I drove him to his Mom's house to stay away from home, thinking this was the best-case scenario. I came home, and lysoled in the house where Tony had been.

It seems Tony, Lauren, & Kara's symptoms all began on Tuesday. Lauren & Kara started complaining of a sore throat, and there noses are running so much! Well, by yesterday evening, they were both running a temp, when I checked it under their arms. I called the On-Call at St. Jude's and they suggested I take both Lauren & Kara to the E.R. to have them covered, and explained what she wanted done. Mom was able to run to Children's with us, while Mamaw Lee stayed over last night. She was watching Erica & Brent, and got them off to bed for me. When we got to the E.R., Kara & Lauren were seen right away. They WEREN'T running a temp when we got there. (This seems to be the usual with Kara). Even when she had her Staph infection, she was only showing borderline/no temp up until 19 hours after her blood cultures showed positive for staph! But, she sure had the chills and did not feel well! The Dr. gave her a 24 hr. dose of i.v. antibiotic to have her covered, and checked her blood counts, and also drew blood to culture. The Dr. suspected what the girls have is viral, (meaning it will have to run it's course) since 3 in the family are sick. They also did a strep test and it was negative for both girls.

Kara's blood counts were good. Her platelets and hemoglobin both had dropped a little bit from last Thursday's bloodwork, but her white blood cells had risen higher than last weeks counts. They were almost within normal range this time. I had to do a follow-up call with Dr. Malik (Oncologist at Children's) this a.m. He expects her blood cultures to be negative since she didn't appear to be septic (bacteria in blood) last p.m. and Kara isn't running a fever this a.m. Lauren's symptoms seem to be worse for her. Lauren didn't need any treatment at the Hospital. Please pray the cooties leave our household soon!

We were able to check in on Brooklyn Drew yesterday, and she is doing overall pretty good after her surgery. Thanks for the prayers. Keep remembering Brooklyn Durham, & have a great Thursday!
Megan

22 Jul 2008, 11:05am EST
PLEASE PRAY FOR BROOKLYN DURHAM - THEY NEED A MIRACLE! www.caringbridge.org/visit/brooklyndurham

Also, please remember Kara's cousin, Brooklyn Drew. She has surgery to remove her tonsils on Wednesday, and Chris Crisp, who has been recently diagnosed with a lung disorder that we know God can take care of for him!

Things continue to stay steady-paced around here. Kara finished her last dose of Rd #1 of Accutane Sunday night. Overall, I think she tolerated it okay. Tony & I were expecting her dry skin to be worse than it was. Last week we noticed raised, red, scaly, itchy patches on her arms, thighs, and calves. Her lips stayed dry & peeled almost the entire 2 weeks. The last week the skin on her head was peeling. Dina thought she had saw dust in her hair! I continued using Eucerin cream & Vit. E lotion on her skin & hair, along with petroleum on her lips. She did have some moodiness/anger/crying, too. She is enjoying these days at home. Mom & Vonda have both talked about having her spend the night. I'm sure she'd have a ball!

Yesterday, the whole gang went shopping for school supplies. I was really glad that I was able to be here to take Erica & Brent this year. Tony continues to stay busy working at the shop, or fixing something outside of work. I still continue to work through our house - trying to get things organized. It's nothing I HAVE to do right at this moment, but after being gone so long, I really want to get everything caught up and done, then I'll feel like I can relax a little bit easier! Maybe it sounds crazy, but over the past 13 months, I felt like our lives were sort of on hold around here. But, I am so glad for this time here, it was so much needed for us! I still need to call & make Dr./Dentist Appts. for half of our crew & to get some appointments taken care of.

Well, I need to go for now! Lots to do!

Take care,
Megan

18 Jul 2008, 10:35am EST
Just wanted to let everyone know that the "Conquer Childhood Cancer" Act passed unanimously in the Senate! It is heading to the White House where President Bush is expected to sign it into law. The act promises to significantly increase federal investment into childhood cancer research. The bill authorizes 30 million dollars annually over 5 years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national child cancer database, & to further improve public awareness & communication regarding available treatment & research for children with cancer & their families. The act will deliver much needed hope & support to children & families battling cancer & more resources for vital pediatric cancer research programs. THANK YOU to everyone out there who contacted their legislatures to support this important bill!

I hope to update again soon. Tony's Mamaw Estes, and some of his family are in from Indiana visiting this weekend. Keep remembering her also in your prayers, as she recently became a widow. Have a great Friday & God bless!

Megan

17 Jul 2008, 6:31pm EST
Tony's been busy at work, and I've been busy at home, trying to sort through each room, and tidy things up here at the house. I'm hoping to get things caught up before the end of Summer! :) We visited with my Uncle & his wife from Indiana, gone to Church, etc., etc....

Over the weekend, I noticed some bruising on Kara's legs, didn't give it too much concern with all the playing she's been doing, but last night I noticed little red dots inside her lip. When I noticed this I immediately thought that maybe her platelets were low. So, this a.m. I called her Nurse Practitioner at St. Jude about it. Since Kara hasn't had blood products outside St. Jude, we needed to get something official set up through an Oncologist at Children's in Knoxville. It was handled, and Kara was seen today by Dr. Malik at Children's in Clinic. He is the Dr. who originally diagnosed Kara in June 2007. I have to say, they all were wonderful to us today. Even Tony thought they went out of their way to make us feel welcome. We met another Dr. also, and there was a child who was having an end of treatment celebration that they let us be a part of. They gave us cake, and drinks, and we visited for a little bit. They let the kids pick out hats to take with them. Lauren & Kara wanted matching hats that reminded them of "Mary Poppins" for some reason. Even in clinic, while we waited for Kara's blood counts results, we were singing "Supercalifragilisticexpealidocious". Kara was having fun until the Dr. walked in while we were in front of the mirror, and Kara dropped her head, and her whole countenance changed. It embarrased her, but I explained to Dr. Malik what was going on. I know I'm rambling, so anyway, the conclusion is that the bruises are probably just from playing, and the red spots in her mouth could be due to the Accutane. We are using Vitamin E lotion on her skin, and vaseline lip balm on her lips. It helps, but her face is peeling - even inside her ears. It would remind you like how you would peel after a sunburn. Some kids' lips crack and bleed, but he also mentioned the inside of the mouth is moist, so who knows?! Maybe she just bit her lip! But we were glad to know she didn't need platelets or a blood transfusion. We were a little disappointed to know that her white blood cell counts had dropped and her ANC is just above 900. Which isn't normal, but it's not dangerously low either. He asked if she had any cold symptoms, because even a common cold could cause these counts to drop. She's had a little bit of a runny nose - that's all, but we also think she has shown allergy symptoms in the past, too. I do know that the Accutane can lower your white blood cell count. She only has about 3 1/2 days left now of her Accutane and she will have a 2 week break off from it. This will be the end of round #1. Sometime during her 2nd week off, we will need to take her back to Dr. Malik's office for another blood count check to help St. Jude in preparing for her 2nd round of Accutane. Kara's appetite has decreased, and I found out that the Accutane can cause that, also.

Tuesday evening, we were visited by the Make-a-Wish volunteers. We had talked with Kara about several ideas, and it boiled down to 2 things she could wish for. She needed a primary wish, and a back-up wish. When she was asked what she wanted she replied, "A Hot Rod!". We had looked up customized golf carts, and they had some pretty neat ones to see, well, the one that caught her eye was made like an old time car, that was decorated in flames - leave it to Kara! We knew of another child who had wished for a golf cart, and had his own golf tournament, but I'm sure Kara wouldn't be using it for golf! Well, when it came right down to it, she wanted to wish for Disneyworld/"Give Kids the World" as her first pick, and the customized golf cart came in 2nd. We don't have any specific dates when we will be going, it may even run into next year. They'll be getting back with us on it.

Overall, we've been busy, but Kara is playing and enjoying being at home again. It is so nice to be in our home again. I hope you all are enjoying the Summer, too! Please keep remembering Brooklyn Durham in your prayers. She is at Camp this week, and I hope she's having a blast - she sure does deserve it!

God Bless,
Megan

13 Jul 2008, 10:33pm EST
I know in the last email I said I hoped to elaborate more on our special visit we had last Tuesday. I know what I write will not do justice for how we felt that day, July 8, 2008. Here goes:

Bro. Michelle, from Mexico, along with his wife, 2 children, and Bro. & Sis. Trent came by our house. Bro. Michelle had been praying & fasting for Kara & wanted to pray for her. When they came, Bro. Michelle played the piano while he & his wife sang a song. When they were finished, he read scripture from Psalms. I remember him telling us that God will do what we ask in His name, and asking us if we believed. They anointed Kara's head with oil, laid hands on her, and prayed for her. You could feel God's Spirit, power & blessing in our living room! When he was finished, he said, "She's healed. The Lord just wants you to praise Him." The kids played together for a short while, and we talked some, but as they were about to leave, Bro. Michelle said, "I still feel His glory," and you could. There was such a peace among us. It was odd to realize that these wonderful people came in our home, we met for the first time ever, and I realized I may never see them again, this side of Heaven. God has been so good to us, and blessed us so much this past year. Even in the car on the way to Children's Hospital (Kara still needed to have her blood drawn to be checked for bacteria & fungal infections), I told Tony that I still felt the Lord's presence. We were happy, and I wasn't troubled about Kara's health. (Just the day before, I was telling my Mom & Dad that Kara didn't look right in the eyes. You may remember me mentioning how I thought they looked dark.) God has helped us tremendously in so many ways, He is so faithful! We are excited about the upcoming scans, and are expecting them to be clear! We are thanking God and praising Him for the work He's done. We appreciate every prayer and sacrifice you all have made on behalf of our family, and Kara. We know there have been so many that have faithfully prayed for her. God does hear & answer prayer. Never doubt it! Wishing you all a wonderful week of God's blessings & peace in your life.

God bless,
Megan

12 Jul 2008, 8:18pm EST
I feel bad that it's taken me this long to update, so here's a quick note to let you know how it's going. (I plan on a more detailed update later.)

Kara has completed 5 1/2 days of the Accutane. After 2 days, the corners of her mouth were uncomfortable. Her chin is pink, too. I continue to use keri lotion & Eucerin cream (it reminds you of a white vaseline) on her skin, and vaseline/lip gloss on her lips. Her Nurse Practitioner mailed out some Vitamin E lotion or oil to try. She thinks it sounds like she's sensitive (no surprise!) to it. They expect dry skin, but if it gets worse, I'm supposed to let them know. The medicine can also mess with the kids emotionally. She gets angry sometimes. Who knows if this is the medicine, or just her temperment?! My cousin from Indiana called & gave me a few pointers to try for the side effects of the medicine - thanks Joe & Melissa!

The results of her blood cultures drawn at Children's were all NEGATIVE - Thank you, Lord! We had some special visitors on Tuesday, before we left for the Hospital. I hope to elaborate on the visit in the future. It was a very special day for us.

We were able to visit with our cousins from Indiana today. It was good to finally be able to meet some of them for the first time! I think the little kids enjoyed playing together today!

We aren't doing the best at getting into a solid routine yet. Hopefully this will come before school starts!! It seems like this is going to be a busy, busy Summer!

Well, we love to hear from you all, too. Drop us a line if you get a chance to check in. Have a great Sunday, and please keep Brooklyn Durham in your prayers. Count your blessings...I am!

Praising God for all He's done for Kara,
Megan

07 Jul 2008, 7:15pm EST
Hello! We have been pretty busy the last few days. Gary, Judy, & Candace were in over the 4th of July weekend, so we were able to visit a little bit with them. We've been trying to get stuff situated again here at home, (that project may take me a while to get accomplished :)! Tony tells me not to worry about it, enjoy these next 2 months. We were able to go to Church again Sunday p.m., which was great. Kara wanted to go up front & sing with the Children's Choir, and then she wanted to go up with the Young People's Choir, too! I'd say she was glad to be back at Church again, too!

Today, she had to start her Accutane. She isn't used to swallowing pills, and we really had a time trying to get her to swallow the 1st pill whole. I called St. Jude's pharmacy to tell them she was having trouble taking the medicine, and they offered suggestions to try. She can chew them, and we can soften them first in water, plus she can take them with a spoonful of food, too. So, we're figuring out what is working. The medicine can cause really dry skin, so I probably should start moisturizing her skin now, before she gets symptoms. I've been noticing dark circles under her eyes. People have commented how well she looks, but I guess being Mom, you notice the little things. Pray this is nothing to be concerned about. We are taking her to Children's tomorrow to have her blood tested again for bacterial and fungal infections. Please pray that the Staph infection that was in both lines, is completely cleared up.

Please pray these next 2 months go smoothly, that the side effects of oral chemo are minimal, and that her disease leaves for good.

I still plan on posting over the next couple of months, I just can't promise it will be daily! Thank you for your continued prayers, and for checking in. Please don't forget about Kara over the next couple of months, I still need her to be completely healed of this nasty disease once and for all!

Take care, and God bless,
Megan

03 Jul 2008, 10:54pm EST
Well, we have moved again - we are at the Grizzly House now, and we are going to move again in the morning...all the way across state to Dandridge! Kara's Dr. released us today in Clinic to go home-home!!! Dr. Furman said we're starting to grow roots here in Memphis - He wanted to know if we wanted to go home, and he didn't see any reason why Kara couldn't go. Her blood counts have came back up again - (Praise the Lord!) I told you this was new territory - this really surprised me today. I was expecting she might have low counts.

We are all ready for this much needed break-away. We haven't been home this long since June of 2007. Here is the plan:

Monday: Start oral chemo "Accutane" . Kara will take 4 pills a day, for 14 days, then she will have a break for 14 days = This will be what's considered the first cycle of oral chemo. Kara will only have 2 rounds of oral chemo at this time. Unless we suspect a problem, Kara will only need to have bloodwork once a month. Please pray that these pills are easy for Kara to swallow, and that she has minimal side effects. Dr. Furman told us usually by the time you think the child can't handle anymore of the side effects, it's about time to have a break off of the medicine. He also said the symptoms usually get better as you go along.

Tuesday: Children's Hospital visit for blood drawn out of both lines to make sure that her staph infection has cleared up. (Sunday is her last day for i.v. antibiotics) Worst case scenario is that if it's not cleared up, Kara's central line may need to be pulled out. I'm not expecting this, since I was told cultures drawn after she was on an antibiotic showed negative for staph. (Please pray it's staying negative!)

In 2 months, we will return for an MIBG scan, then a decision will be made if Kara will need radiation to other spots in her body. We are hoping so much that God moves on her with His healing power and with His touch, so that Kara doesn't have to go through more treatment here in Memphis, and that we can be home together for the majority of the time, instead of being apart. It has been almost 13 months, and God has been so good to us, and blessed us tremendously, and proven himself faithful in every circumstance. I know that this isn't too hard for Him. I hope it's part of His plan. But, if it's not time for this, then He will give us more grace & strength that we'll need to go a little bit farther, until His will is accomplished. Please keep praying for Kara Grace & Brooklyn Durham.

God Bless, and have a Happy 4th of July....
Megan

01 Jul 2008, 2:21pm EST
Hi, everyone. We have been on the move again. Kara was discharged yesterday evening from St Jude. This made us all very happy, even though it was great to see the all the familiar faces on the 2nd floor again!!! The sad part is that she tested positive for a viral culture done that was collected on the 26th. She is back in isolation............can you believe this? We were walking down the hall when we were told, and poor Kara was saying, "I'm not going in there!" (Who knows if this was steroid related or not?!) She's a real trooper though, and she went back in her room without too much of a commotion, disappointed, but she's accepted the situation again. I'm not sure exactly how many negative cultures that we need before Kara is released from isolation. McDonald House doesn't have isolation rooms, and the Grizzly House is temporarily closed for plumbing problems, so they put us up in Springhill Suites, downtown Memphis. It's only 2 minutes from the hospital. We are hoping we won't have to move again for a few days! It is nice and we're very thankful that they have a place for us to stay. Erica & Kara are enjoying it here, too.

Kara is overall doing pretty good, but her blood counts keep dropping. I told Mom that when her hemoglobin & her platelets fall too low, she can get transfusions, but we have to just wait on her white blood cells to recover on their own (her defense against bacteria and infection.) Which isn't very reassuring after this bout with staph. During the last little bit of her treatments, these counts were always the slowest to recover. I know we have Lauren's cells to boost Kara with if her white blood cells were ever to stay down too long, and were having trouble recovering on her own. I am so thankful that she had some defense while she was septic. I know she still needs the antibiotic treatments, she will be on these until July 6-7th, but how much of an advantage would her bacteria have had if she didn't have any defense at all? I am so glad they started her on an antibiotic the first night she started having symptoms. They even ran the antibiotic in both lines (before we even knew she had staph that tested postitive in both lines) for precaution and to be safe. I'm thankful that God protected Kara, and brought her through the worst so quickly.

While she was in the unit, I noticed her appetite was increasing, which was great, considering she got to the point of not really eating anything. She didn't drink very much while she was inpatient, but she was continuously on i.v. fluids. They decided not to put her on i.v. fluids when she was discharged, hoping that she would feel like drinking more. They will be checking her electrolytes along with a complete blood count on Thursday, when we meet with her Dr. in clinic again. He peeked in on us yesterday. He asked me jokingly if I thought about moving to Memphis. I mentioned for him to look at Kara, because she was up, playing, acting fine. He said, "I know, that's what matters." By the way he was talking, I'm thinking that we'll be going home shortly. We'll probably be consenting for the Accutane tomorrow, too, and have Kara starting it within the week.

Today we are playing catch up, and are relaxing, too. We need to tend to laundry, and review the Accutane information again before tomorrow. Hopefully we'll be successful in getting Kara to eat & drink fairly well. Her weight is holding, and she's been wanting more corn dogs. I plan on going to the grocery with Erica, but plan on leaving Kara here with Mom. With her ANC & white blood cells falling, I decided not to take her.

Please pray for no more bacteria infections & viruses and complete protection and healing. We were told that after her radiation treatments she could be transfusion dependant for a while. With Kara just completing her first round of radiation, and just starting oral chemo, this is new territory. We want her cancer to be destroyed, but not looking forward to the possible side effects of the oral chemo, and low counts. Please keep praying for Kara, Brooklyn, and all the ones out there fighting and battling illnesses & diseases.

God Bless,
Megan