31 December 2009, 3:49pm EST
Not hardly much time at all had passed after Kara was out of sedation, until we got a call from Kara's nurse in clinic that Dr. Furman wanted to meet with us in the cafeteria where we were at. Surely, this had to mean good news, right? No formal meeting in clinic to go over different treatment options - Surely, this had to mean good news!.....STABLE is the official word on the MIBG scan. She will start Rd. #2's chemo tonight, that continues for 7 days (at HOME! - We will head that way tomorrow morning.) He did add that the Radiologist is questioning Kara's other eye orbit. Because of this, Dr. Furman is adding an order in that she have another MIBG scan in 3 weeks along with an MRI of her head. (Please continue to pray, believing!) We did not get a preliminary reading of her bone marrow biopsy today. Next week the final results should be in. We will continue with this chemo and Rd. #3 will begin in 3 weeks, unless the final bone marrow biopsy (taken today) would show something crazy.

Kara will only need to have bloodcounts in Knoxville once a week when we return home, unless her ANC falls below 500, which is likely, since it fell to 200 last round. If this should happen, labs will need to be done 2 times/week until they rise above 500.

Kara's ANC was 1600 today. Her WBC's were 3100 (3.1), Hemoglobin was 10.8, and platelets were 215,000. These are still pretty good.

With smiling faces, and happy hearts we are beginning a new year feeling very blessed! Praise be to God for all His blessings!

Many thanks for all of your prayers !!!
Wishing you a Blessed & Happy New Year !!!

Tony & Megan Lee & family

30 December 2009, 7:38pm EST
Greetings from Memphis, TN! We left town around 7:30 a.m., and the trip went well...Lauren got sick just once on the way here. I think next time I should wait until after she's had breakfast before giving her her vitamin! The girls both ate really good for lunch. Kara had her labs drawn, and the glow medicine injected into her central line. We won't know the results of her labs until tomorrow morning when she is in clinic. She will have clearance for sedation then, also....(I was just talking to Tony how she's doing better than she was Monday with her cough.) So, I don't see why she shouldn't be able to go forward with her scan and biopsy tomorrow. She is in good spirits, and the twins have been busy coloring, painting, playing with play-doh, etc. They are enjoying Dominoe's cheese pizza right now. Erica & Brent spent last night at my parents' house, and tonight they will get to spend it with their cousins, and then tomorrow night at Tony's parents' house. I am glad they are being occupied and kept busy with family and also kids their own age. Please keep praying for good results on Kara's tests! Please also take time out to remember the families who are left with sorrow and grief as this new year comes on us so quickly! May this new year bring healing, restoration, and peace to every hurting heart, and may you feel our Saviour's mighty, powerful, gentle, loving, presence ever near to you in 2010. God is a good God, and worthy of our praise!

New pics have been added to the Lee Shutterfly site.(Memphis Children's Museum, Christmas, B-Day, etc.)....Click on link above to view!

God bless,
Megan

29 December 2009, 5:53pm EST
I guess I'll try to back-track again, and see where I need to start this update! We had a lot of laughs and game-time over the holidays. The kids, of course, liked the idea of opening up gifts! We went to my parents to see my cousin, his daughter, and my uncle from out of town on Saturday. It was really good to see them again! We weren't expecting to get to see them so soon! We also had a really nice visit with 2 people we never have met before. An old friend that I went to Vocational School with in Indiana, is now a High School Grammer teacher out of state. Her students wanted to be a blessing to our children and send them some Christmas gifts. These kids went above and beyond! One of the students, and her Mom, were heading our way, and offered to personally deliver the packages to our home on Saturday. The kids really had fun opening the gifts, and we enjoyed watching them! They even had a surprise gift for Tony & I. THANK YOU to Mrs. Dilts' class for arranging this for our family! This is just one example that I've mentioned, but there have been numerous people that have shown our family love and kindness throughout the duration of Kara's illness. I haven't mentioned everyone personally, so I hope no one is offended, but we send a huge THANK YOU to YOU ALL for what you've done for us!

I am also thankful that the holidays could be spent at home together, and not inpatient with a fever and low bloodcounts. Other than having a cough, and runny/stuffy nose, Kara is doing real well. She was at clinic on Monday, and her ANC was over 3000! WOW! I was SO happy to see that her ANC is still rising, along with her white blood cell count. Her red blood cells are near normal, and her platelets are normal now. They saw no reason why she couldn't travel to Memphis tomorrow. I had the Dr. listen to her lungs, because of having a cough, and she needs sedated Thursday. He didn't hear anything that he was concerned with. He said on her lower, left side, he wasn't able to hear anything (like breathing sounds), but he didn't act concerned, either. They will check her out in Memphis again on Thursday, just before she's sedated, too. We will leave around 7 a.m., and her first appt. will be at 1:30 tomorrow afternoon. She will have labs, and then the glow medicine will be injected into her central line. Thursday, she will have the MIBG scan, followed by her bone marrow biopsy. We should know something Thursday evening. I will have computer access while we're gone this time, so I will try to update while we are away. I don't know how long Kara & I will be away this time-all depends on her treatment plan. Tony & Lauren will travel with us, but if we should have to stay longer than Friday, then they will travel back together, and Kara & I will travel home at a later time. If the scan is worse, we will be given our options for a different treatment than what she is on. If it's shown improvement, we will be allowed to stay on the medicine she just had, and be able to come home, I am assuming, with Tony & Lauren. Well, I better run. We still have stuff to get done around here before we head out of town. Have a great night, and we appreciate the continued prayers!

God bless,
Megan

23 December 2009, 4:11pm EST

HAPPY 6TH BIRTHDAY, LAUREN & KARA !!! WE LOVE YOU !!

20 December 2009, 11:49am EST
After a very busy, and activity-filled week, Kara is still sleeping peacefully in bed as I type. I will try and back-track to where I left off.......

Friday,Tony thought it was best to go ahead and have Christmas here at home with our kids, since Kara's ANC was so low, and he thought this week things would be more hectic. (The level it was at, would have sent us in the Hospital if she spiked a fever.) So, that's what we ended up doing, and the kids loved it! It even ended up being a "white Christmas" . The snow was so beautiful. Erica & Brent went out to enjoy it for a couple of minutes. They were so fun to watch opening gifts. Lauren was so excited, she started jumping up & down!
Saturday night, we had our Christmas dinner and the yearly auction that benefits our youth group. It was a lot of fun and was a big success. After all this, there was dress rehearsal for the play. It was rescheduled for Sunday morning, and it was really good. The kids did real well! Sunday, Kara, Lauren, & their cousin, Bryanna put in their birthday pennies at church. This was done before the play began, and since they were all angels in the play that morning, they went up in their angel outfits. They were so cute! (I took more pictures that I would like to post to Shutterfly when things slow down!) After church, we had the twins' party here at the house. They had balloon races, played hot-potato, ate cake, ice cream & chips, opened presents, and played here at the house. At times Kara didn't act too perky, and she didn't eat very much at the party. But, overall I think they had fun! Afterwards, Tony, Erica, & Brent went on to church for service, while the twins' and I stayed home.
Well, Kara spiked a fever while they were gone. I called Tony, and they headed home. They had special prayer for Kara, too. Well, Kara's temperature ended up dropping by the time I got to talk to Dr. Malik. He said he hated to have her come in the e.r. if it wasn't necessary. But, since her temp went down, and she was acting well, we could wait and see how she did over one hour, and then call him back. We had orders to call if she started acting lethargic or her fever spiked in the meantime. When we called him back, her fever had risen. He said it was too risky to take a chance, that she needed to be seen in the e.r. He said the fever could just be from this respiratory thing that she has. (She started coughing a few nights ago in the night. Yesterday, it started sounding worse.) So, they drew blood cultures, took a chest x-ray, and got her labs. Praise the Lord for good news, because we were so worried her ANC would still be low. It went from 204 on Thursday, to 2900 last night, her wbc was 4000!!! She was so happy in the e.r. for some reason. We were able to go home, she didn't have to have antibiotics, her chest x-ray was clear, and her labs looked pretty good! Her hemoglobin and platelets were the same as on Thursday. She doesn't have to be seen in clinic today......She doesn't have a fever, either! I just have to check-in with Dr. Malik later today to let him know how she's doing. If Kara's doing good later on, we are planning to see the Living Christmas Tree in Knoxville. If it works out, we have tickets to see Santa at Pro-Bass, along with kids meals at the indoor restaurant that is there. I think we may try that tonight before heading to Knoxville! We also got good news about my Dad. Some of you know that after the surgery to repair his hernia, there was a spot on his stomach that was sticking out where the original site of the hernia was. We all pretty much figured that this was still the hernia, and he would be facing yet another surgery - soon. Well, more good news came today that it is a pocket of fluid, and he won't need surgery. What a relief! I am so thankful and happy for everything working out all around. I really hope it continues into the rest of this week! God is mindful of our needs, AND our wants! I appreciate how He continues to bless and help us..........I wanted to say a big "THANK YOU!" to ALL that have blessed our family, and as always, for the continued prayers that are being said for Kara, as well as our family as a whole. We still believe in prayer!

Later in the evening (9:22pm) ************************* I just got off of the phone with a nurse at Children's and I realized that I have told people the wrong ANC amount. It went up to 2900, not 4000. 4000 was her white blood cell amount. **************************** Also, she spiked another fever this evening. Tony called Dr. Malik to see what the orders were, and since she's not acting septic, and doing well, along with having a decent defense, he said there's no need to bring her back into the E.R. She is getting along real good!

God bless,
Megan

18 December 2009, 9:36am EST
Kara made it to the Christmas Party at school yesterday..Just in time!..Her hemoglobin rose to 10, so she didn't need a transfusion of blood, but unfortunately, her ANC is at a VERY LOW 208. I didn't expect it to be this low. She went from a little over 1000 on Monday, to this yesterday....Please pray that this rises quickly with her birthday & Christmas right here on us! We are on fever-patrol.....If she spikes a fever, and her ANC happens to be 500 or below she will automatically be admitted again.....We would LOVE to avoid this!!!! Her platelets dropped just a little. Her weight went up a little bit.

Saturday is the Christmas program at church, and Sunday we'll be having the twins a cake during the day and we'll let them open some presents for their birthday. Monday, Kara has another doctor's appointment to see what her counts are.

Have a great weekend!

Megan

16 December 2009, 5:57pm EST
I have been behind on my emails, but I found one today from St. Jude that has Kara's upcoming scan dates. She is to be there on Wednesday, December 30th for labs and the injection of her "glow medicine" into her central line. Then, on Thursday, December 31st she has a clinic appt. to clear her for sedation to follow at 11-11:30 a.m. She will then have her MIBG scan, and another bi-lateral bone marrow biopsy. Following these, she has recovery, and then we meet with Dr. Furman in clinic to go over what he has found out about her scan. He may know something preliminary about her bone marrow sample then. I'm not positive about it, though. I appreciate your prayers!

Megan

15 December 2009, 6:56pm EST
Well, where do I start? Life has been busy! It took me a couple of days get things done around here that needed tended to. We've had a lot going on...But, I'd imagine most people do this time of year! The kids met up with the other kids from church to sing Christmas songs, and hand out Christmas cards to the residents last night. This week the kids have play practice for our church's Christmas program. It's going to be Saturday night. Kara, Lauren, & Erica are angels in the program and Brent's a sheperd boy. All the kids will be singing, too. Kara's really looking forward to it! The twins have been enjoying school this week. (Well, they normally do anyway, but, they've had a lot of fun Christmas activities for them this week!) I think there's something fun to do everyday this week!

My Mom took Kara to the Dr. for me yesterday. Kara's bloodcounts are falling. Her ANC was a little over 1000 - (This has to do with her immunity level.) It's O.K. for now...even though it's still suppressed. But, her red blood cells are near transfusion level. It's 8.5, and they transfuse around 8. Her platelets have really gone down, too. She's not close to needing a tranfusion of platelets, though. She goes back to the Dr. on Thursday, and we'll see if her counts are recovering, or if she'll need a blood transfusion. I'd like to think that they will rebound on their own, but we'll see. If she needs blood, she probably will have to miss out on her Christmas party at school. I'm glad she's been celebrating a little everyday already! Her first day back to school went really well. I told her what her options were yesterday morning. She could wear nothing, a headband, a hat, or her wig. She was already wearing her headband she had asked for, when she said, "nothing." So that's what she did! She's been told she's just as beautiful without hair...I really think she's a lot more used to the fact of being bald now. The wig is adorable on, but it makes her itch....I'll have to post pics sometime to share.....

Well, I better go. Have a great Tuesday night!!!

Megan

11 December 2009, 4:37pm EST
I wanted to update sooner, but I didn't borrow Mom's computer, and I didn't make it back to the computers at RMH to update.....

The final results came in....there IS tumor in her bone marrow. Dr. Furman talked like it wasn't a lot, and the CT of her brain confirmed the MIBG. It is on the BONE in her head.

Kara has completed her medicine.....Sometimes she was hilarious on it....very laid-back, and funny, and other times she reminded me of when she was on steroids....weepy, sad, very angry. Sunday was the worst day for the mood swings, but for the most of the time, she was happy. She talked more to people while on it. We were told the moods are a side-effect, though. One good thing was that her appetite soared, and she gained nearly a pound this week. I was SO happy about that! She ate nearly a whole jumbo-sized Hershey bar one night- (the thick ones!)

Tuesday there weren't any appts. at the Hospital, so we headed over to the Children's Museum. It was SO neat....The girls LOVED the miniature Kroger store. That was their favorite part....cash registers that they could use that actually scanned barcodes, and buggies too! There was another station that had a station that was set up as a make-shift drive-thru bank. There was a real car that the kids could sit in, and push the button to send the container across the aisle to where the bank was set up. They could sit in the car and look at the bank teller while they sat in the vehicle. You could watch the container go through the shute overhead, and watch the teller receive their information. It was really cute. There was a Dental station where the kids could where scrubs. It was just a lot of fun!

Target sponsered some fun for the kids on Wednesday....They gave the kids a $10 Target gift card, and allowed them to pick out a gift of their choice. They gave them a book, a T-shirt, and a gift bag with gloves and an activity pad in it. They also provided lunch. Then, Wednesday evening at the RMH, they had a monthly birthday party for the children there. Papa John's provided pizza, and there was cake and ice cream, along with gifts from RMH. They gave her probably 6 gifts! The house manager called me and asked if Lauren would be there, because they wanted to give to her, too, if she was there. It was really nice ..Then, in clinic Thursday, the staff brought her balloons and a T-shirt, and a signed card from them, and threw confetti on her, and sang. It was a nice ending to our trip.......The drive home was fine, and we are glad to be HOME! Next week will be busy, but at least we are home. Kara goes to the Dr. on Monday, and again on Thursday for labwork. Thursday is the kids' Christmas parties at school. I hope Kara's counts don't fall too low, so she can be there! Her white blood cells are dropping, but her red blood cells are holding, and her platelets have actually increased. This chemo can affect bloodcounts, so pray that her white count doesn't fall too low, and we don't get sick, so it can seem more normal around here this month! Thanks for checking in on Kara and for your continued prayers!! We really appreciate them! We still believe in the power of prayer!!!

God bless,
Megan

04 December 2009, 8:03pm EST
Just a quick update....Kara has started the new medicine, and within probably an hour and a half of taking the first dose, she said that she felt dizzy......She seems happy on it, but is a little "loopy" acting.....Tony left this evening. Erica is staying with Kara and me this week. We have an appt. in the early afternoon tomorrow, but it is just to have a lab drawn for the study. There are lab draws they do on certain days to help them determine data for the study.......Today, she had blood drawn over the duration of 6 hours, but we were able to be out and about during the waiting......So, she will have a quick trip to the Hosp. tomorrow, and then she will be seen in clinic on Monday, and have regular labwork then. She will also have an appt. on Thursday of this week, and that's all that is scheduled for now.......So far, no adverse reactions to the medicine....Well, I will sign off for now. We just made it over to the Ronald McDonald House, and we need to get settled in. Tony moved us earlier today. This is where we'll be staying this week. The kids always look forward to it.....There are Christmas trees everywhere! One is decorated in a patriotic theme, one is a rubber duck theme, and the one at the front desk is decorated as a "McDonald's" tree.....Underneath it are hamburger and big mac boxes, and there are fry bags and drinks decorating the tree......Well, I will update as I can.....Thanks for checking in! Megan

04 December 2009, 12:52pm EST
Tomorrow will mark 2 1/5 years since Kara was first diagnosed, and we are NOT without HOPE......

The latest MIBG scan shows progression. The MIBG scan is the "main scan" for Neuroblastoma. About a month ago, when we found out Kara relapsed, there was tumor around the orbit of one eye, and also tumor in her bone marrow.

Yesterday, we found out the MIBG might be glowing "hotter" / (more intensly) around the eye orbit, and there are new spots from one month ago. They are on the back of her head (on the BONE), and a couple spots on her pelvis.

As far as the bone marrow biopsy goes, the preliminary reading is showing a of couple spots, also.

The CT is the same as before. We have been told on previous readings that there is "something there", but it's FINE.....They call it "residual." - something that is there after the surgeon removed the primary tumor in her abdomen.......But, we were also told a long time ago, that there is fluid there, which goes along with scar tissue.....

We found out one of the studies that we had considered before as treatment, is now closed. It could re-open in about 3 weeks. But, while we were in clinic, Dr. Furman received the "Go-ahead" for a study he has been trying to get approved......We consented for this study- which will begin today. This is a study that will involve oral chemo for 7 days. She will take the 4 pills once a day, and we should only have to stay here for about the first week while she is receiving the medicine. It is a study that shows promise for Neuroblastoma...(It's also written for ALL- a type of Leukemia.) It's considered a Phase I-II combined. She is entering in at the Phase II part. This means, they have determined a safe dosage to give her already, and they are at the stage now to give it to children to try and determine it's effectiveness.....

After 7 days, we are hopeful to return home, and have a 2-week break off of chemo. We WILL be home for Lauren & Kara's 6th Birthday, and home for Christmas....YAY! We will return around the Monday following Christmas, when Kara will go through the same testing that she just had this past week. This will let us know what is going on, and whether we should pursue treating her on this study or consider other options.

Today, she is getting a CT of her brain so that they will have a scan to compare as "base-line" if needed in the future. This was not to worry us, and it's not an urgent scan. They just want it to have on record because there is tumor showing up on her head now, and for possible future reference.

I really appreciate everyone praying....I am at peace & God is good! I need to go....St. Jude called & I have to run! Take care & God bless!

Megan

01 December 2009, 8:33pm EST
Well....we made it to Memphis fine...Got in last night around 8:30 or so...Dad came through surgery fine & he's getting along okay....still has some pain, but might be discharged tonight....Thank you for praying for him, too! I appreciate that!

Kara had an EKG today. She also had the nuclear medicine injection of her "glow medicine" that will allow any Neuroblastoma cells to show up, if there are any, during her MIBG scan. She had labwork today, but we won't know the results until tomorrow in clinic. She also had a hearing evaluation. Come to find out, they normally have a follow-up evaluation after transplant at some point. Well, her last hearing exam was March 2008. Her transplant was April, 2008. I don't think she ever had that follow-up until now. But, right before her transplant, she had high-dose chemotherapy that could be the cause of a little bit more hearing loss in both of her ears. It is in the mild hearing loss range (high-pitch sounds). She isn't needing hearing aids, and this loss shouldn't interfere with communication for her. It's not anything to be too concerned about. (She passed her K-garten hearing evaluation in the Summer- so I think she's doing pretty good!) We may notice something when she deals with "SH's" and "S's". But, she seems to be doing pretty good! The Audiologist told us to try to avoid exposure to loud noises to prevent any further hearing loss for her.

Tomorrow, Kara won't be able to eat until about 4 p.m. or so. She will be sedated around 12:30, and recovery is from 4-5 p.m. She will start out the morning drinking constrast with 18 ozs. of liquid for her CT scan, which is tomorrow. She also has a clearance visit in clinic to make sure she can be sedated. She won't be sedated for the CT, but will be for her MIBG scan (main scan), and also her bi-lateral bone marrow biopsy. We won't know any results until Thursday afternoon when we meet with Dr. Furman in clinic....around 3-4 p.m.

Kara has her moments of agitation, and being contrary, and also her moments of being funny, happy, and sweet. I wish her eating was better, but she is eating a little here, and there. Her weight, height, and head measurements are about the same as last month. Her blood pressure was real good today. She's been working on school work with Erica today & some this evening, too. Well, I guess that's about it. Oh, she's gotten sick about once a day since Sunday, but she still has sinus drainage, so, maybe that's what that is all about.

I appreciate your prayers and for checking in on Kara.....I don't know exactly when Kara & I will be going home. It will all depend on what's said in clinic on Thursday afternoon....If they can start a treatment right away, I don't know if we will have the weekend off, and start at the beginning of next week, or if they will start something right away. I will know more on Thursday. Also, if she ends up going on a new treatment, they usually want her here for the first round to see if she will have any adverse reactions to the medicines or not. So, I will try to let you all know something when we know more of what's going on......Love you all,

Megan