31 May 2009, 8:03pm EST
Whew! Has it been hot down here! It's been sunny & in the 90's! Yesterday, we headed over to the Zoo. Mom had never been, and it had been a long while since we had been there, too. We watched the sea lion show, and rode the train that goes around the farm animal area. We walked A LOT! I was glad to be out getting some exercise, but we were tired later on. By the end of the day, Mom was holding Kara and I was holding Lauren for a short time on our way to the car....... Kara said her favorite was the bats (of all things! ) : -) Lauren liked the sea lions the best.....

Today, we have stayed around here. We were outside for a little while today, but with the heat the girls didn't stay out long....I thought we may head back up to the craft room with the girls in a little while. Kara wrote a note for Tony today and she wants to mail him something. Erica sent me a picture text with the words, "I really do love you." So, you can tell we're gett'in to miss'in each other. 5 more days 'til we see 'em again ...... Some days it seems like it's been longer than a week since Kara started on this new protocol, but she's do'in good. Eat'in, drink'in, play'in, and they girls have even been little stinkers at times this week.... :- ) Tomorrow we don't have to be at the Hospital until 11:30 for assessment and triage, then a clinic visit....

Enjoy what's left of the weekend! I'll update more tomorrow........

29 May 2009, 5:59pm EST
Kara is doing well. She had her blood draw today, and her blood pressure was great, so they didn't need to re-check it in clinic. Another low-key day around here. We've did cleaning and laundry here, and the girls are ready to go back outside to play for a while. They really love this place! Well, I will go for now. Have a great weekend. I will update again later.

Megan

28 May 2009, 6:12pm EST
Kara woke up this a.m., ready to eat - she had part of a banana, a blueberry granola bar, and some cotton candy flavored yogurt. I was so glad this a.m. getting her to eat breakfast right away was an easy task, because an hour into the fasting period (after her chemo) she was ready to eat again. There have been a couple of days that I let her eat about 20 minutes earlier than she's supposed to. Hey, when she wants to eat, I'd rather not have to deny her the privilege!

Her Dr. appt. revealed she has gained some weight this week. I am always thrilled to see this! When her vitals were taken, her blood pressure was a little too high for her age. They rechecked it about 5 times. This is a side effect of Bevacizamub, and it's controlled with medicine. But, since this is her first incident, she will have this rechecked again tomorrow, to see where we stand. Sandy thought that she looked pale today. I mentioned to her hat Kara's lips/gums have been washed out looking, but her labs show that her Hemoglobin is 12.1 which is normal. Actually, all of her counts were really good today - they were ALL NORMAL - praise the Lord! I haven't seen this too often! Tomorrow, she will also have one blood draw for research purposes to tell them more about how much of the drugs are in her blood. She has these blood draws at different times during the course of chemo.

Today has been pretty low-keyed around here. We did make it outside to the playground today. The weather has been a lot cooler than yesterday - looks like it could rain before long. Well, I will talk to you later! Have a great night & God bless!

Megan

27 May 2009, 10:52pm EST
Well, not long after Kara had been awake, she was asking who was coming today....I told her "No one," and she replied that we had 3 more days until the rest of the family come here. So, I had to dissapoint her again, and tell her it was more like 9 days. But, this is something for us all to look forward to! Even Erica was reminding me on the phone this evening how many days are left on our countdown......

Kara has acted like she felt good today, and she seems to not feel as tired as what she did yesterday. We didn't have any appts. at the Hospital, so we ran to Wal-mart. The girls wanted to pick out clothes for their baby dolls. That is what they're playing with right now. We did enjoy the craft room tonight for about 2 hours. We decorated picture frames, made keychains, and the girls made little paper people to play with. We made some pictures and crafts for Erica & Brent, too, when they get here. That was the probably the highlight of the day, today. We got so busy with crafts, we were overdue tending to laundry, and supper was at 8:30 tonight! Mom said we did it all in one night as far as crafts go, so what are we going to do next time?! Well, we didn't make it outside to play today, so maybe tomorrow. It was really hot today.....maybe tomorrow will be better. She has labs at 9:30 and a clinic visit afterwards. I will update again tomorrow evening! Please keep praying that she doesn't have any bad side effects to deal with. Oh, and we also met the Grandma to a little girl named Tess who has Neuroblastoma. They are staying here in RM housing also. Please remember her in your prayers, too! Thank you, and have a great night!

God bless,
Megan

26 May 2009, 12:56pm EST
Well, today was the official moving day. I think this was one of the easiest moves we've had so far! The girls really, really like this place! And I'm excited that we will eventually get to put Kara's handprints on the cafeteria walls when we leave....This is something we never got accomplished all the other times we've been here. Even Lauren was asking me if she could put her handprints up too...All over the kitchen walls you can read about all the kids who have stayed here, their birth date, diagnosis date, and the type of cancer they had. There are way too many handprints to represent childhood cancer! Just this past week there were 6 new families coming into the Grizzly House. Keep praying for all of these children! We went to Kroger to get some things to fix here to eat, and when we came back, we were all invited to a nice grill-out type supper. It was really nice. After Kara ate, she started acting tired, and wanted to go to our room, but ended up on the 2nd floor playroom for a while, then back downstairs in another playroom, and in the living room area, then outside, and then back in our room. I plan to get her in bed earlier than last night. She stayed up late - probably close to midnight. Well, not much else to say, so I will close for now. Please keep praying that Kara doesn't experience any unpleasant side effects. Have a great night.....and God bless! Oh, and there's 10 more days until Tony, Erica, & Brent will be here too!

Megan

25 May 2009, 9:50pm EST
We started off the day encouraging Kara to eat & drink breakfast, because after 10:15 or so she has to hold off eating and drinking until about 1:15. We do give her a drink during this time with her liquid chemo to mask the taste. But, it's recommended with the Sorafenib that she doesn't eat or drink 1 hr. before, or 2 hrs. after taking it. She takes this twice a day, so it equals a 6 hr. period. Well, by lunchtime she was irritable, and really hungry. She was crying and fussing wanting to eat. But, she got her tummy full, and munched some more when we got back to the Grizzly House. With her chemo, she is supposed to drink more than usual to prevent some side effects, so from about 1:15 - 10:15 we really need to push the drinking. Dad offered her $5 today to drink her cup of soda. She downed it, so Dad if you read this tonight.......She followed through and she's Walmart-bound!

Kara had another bloodraw today, and her labs looked good. She won't have to be seen again at the Hospital until Thursday. This is her usual lab check and clinic day. They have given me a folder with a calendar to keep track of when I give her her meds and any side effects she experiences I have to write down. She seems to be more sensitive to smells.This morning, she got a little gaggy over a smell, but we gave her some medicine for it, and she was okay. Overall, so far she is still doing good.

I have to check tomorrow about moving to RMH. We are only supposed to be here at Grizzly for a week at a time unless Kara's in isolation (let's hope that doesn't happen again!) It's been over a week now because of the holiday. Mom will probably be here with us now for a couple of weeks I would think. Well, I will update more later......Have a great night!

Megan

24 May 2009, 2:52pm EST
Yesterday Kara began her chemotherapy. Because it is a research protocol, Kara had numerous blood draws over 9 hours throughout the day. For only about 2 hours she was hooked up to an i.v. The rest of the time, we were able to roam around, so it wasn't bad. Thankfully, Kara has felt good. We are giving her anti-nausea meds for prevention. Kara's appetite has been very good this week. She now weighs over 40 lbs. Yesterday afternoon, we thought that the meds might be taking a toll on her, but then she turned around and ate a whole cheeseburger! She has really taken a liking to the cafeteria's peanut butter cookies. She wanted them for supper last night!

About the oral meds I was telling you about - the Sorafenib is a total of 4 pills in the a.m., and 4 pills at night. The Cyclophosomide is a liquid. So far, so good. But, she hasn't reached the total dose of all 8 pills yet. That will be tomorrow. (Please pray for Kara that she doesn't loose her hair!) She had a blood draw today, and she'll have labwork, and a blood draw along with a clinic visit tomorrow. Mom and Dad are on the road as I type. Dad will return home with Tony tomorrow, and Mom will stay here with us girls for a little while. Tony's family back home are helping us with Erica & Brent. What would we do without family and friends ?!?!?!?! Thank you all for your prayers and all of your help!

Have a blessed Sunday!
Megan

22 May 2009, 10:05pm EST
Well, I think it's time I update you all. I decided to wait until we got the official pathology report back from the bone marrow biopsy before I updated, when I had all the information to tell.

First, the MIBG was "completely negative" meaning, it was clear, and normal, and there was no glow to it, like there was previously. Thursday, Dr. Furman looked at it, and he said there were a couple suspicious clumps, but they were on the edge/corner of the slide, and the pathologist would have to look at it. Well, the patholog. couldn't tell us for sure, so they did a stain, and the final results today were, "a very, very, small amount of tumor in her bone marrow." Dr. Furman said it was "a good thing" that we had to have the stain to tell.

So, we also found out that BOTH research/experimental studies are opened, and Kara's eligible for both, but we still opted for the one we originally talked about. She will begin tomorrow. Each cycle is 21 days. For the first round, it would be a good idea to have Kara here at St. Jude to see how she is going to tolerate it. It is 3 drugs: i.v. bevacizumab for the 1st day of each cycle, which is every 21 days, then an oral cyclophosomide pill 1 time a day, and an oral sorafenib pill 2 times a day. I think she will be able to handle taking the pills well. (She is a trooper on doing what she's asked to do when it comes to her treatment. That is such a blessing!) She has only had the cycloph. before, as i.v. The other 2 drugs are new for her, and they work differently than anything she's had before, if I understood things correctly. We shouldn't expect her counts to go so low where she would need blood and platelet transfusions, or the dreadful G-CSF shots to bring her white blood cell count up. That is such a plus to this. We would hope that this would allow her the time out of the hospital, while still receiving treatment. There is a possibility that her hair may come out. We told Kara about this this afternoon while we were eating lunch, and she wanted us to pray about it right then. I know she would love to be able to keep her hair. She's proud of it, and I was even able to put it in 2 little ponytails today.

During the past evenings, we were able to get out and enjoy a downtown horse and carriage ride, and a trip to the Mud Island River Park and Museum where they also enjoy a monorail ride that goes over the Mississippi River. The girls had so much fun just getting their feet wet in a simulated river display they have set up. It's an added bonus for the kids and families of St. Jude to enjoy while here.

Tony will be heading back home Monday. I talked with Mom tonight and I expect she will return possibly Wednesday. I also expect us to be moving back to the RMH next week. I know the girls will enjoy this! I will be keeping Lauren here again with me & Kara. We talked to Erica & Brent this evening, and they understand that Kara's doing a lot better, and we may be here a little less than a month for right now. They seem to be okay with it. Today was their last official day of school. Erica is middle school age now, and Brent will be in 4th this fall. Well, I will go for now. I just wanted to let you all know where we stand.

Thank you for your continued prayers, and all that you do for us!

Good night & God bless,
Megan

19 May 2009, 10:28am EST
Not a whole lot to report today. Kara had a good day.We saw some friends that we haven't seen in many months, and I think today was the day for the toychests to be refilled in the different areas of the Hospital. Kara wound up with 2 fishing games, and a wooden puzzle. Then, even Lauren ended up with a duck from an AFLAC representative. It says, "Aflac, Aflac, AFLAC!" Lauren thought it was saying, "quack." Anyway, she finished the pre-tests today, and tomorrow she will have another MIBG scan, and also another bone marrow biopsy. We shouldn't know the preliminary results of these 2 tests until Thursday a.m. when we meet with Dr. Furman in clinic. Tonight, I am going to go back over the consent form for the research study. I need to round up all of my questions for her Doctor. I would love to see a miracle this week! We appreciate you all, and thank you for the prayers.....

Oh, I thought I'd let you know Tony pulled Lauren's loose tooth this past weekend. It never really tightened back up after Kara loosened it up. It may be a couple years yet before the gap fills in, but it really needed to come out! Well, have a great night, and I probably won't update tomorrow. Take care!
Megan

18 May 2009, 11:53am EST
I just wanted to thank everyone for their prayers! Just a quick update to let you all know that we are heading out to Memphis in about a half an hour. We told clinic to schedule everything that's needed for one of the research studies that is currently open. Kara does qualify for it. It is a 3-drug combo. 2 drugs are oral, one is i.v. She has to have base-line testing done before the treatment. So, tomorrow a.m. she has labs, a ct of her brain, an x-ray, & "glow-medicine" injection into her central line in preparation for the MIBG scan. It would be awesome if in the process of testing, everything would be clear and show "No evidence of disease". I still believe the Lord is going to heal Kara. So, I want to thank you for all the prayers. I know some of you are fasting this week, also, and we appreciate your sacrifice SO MUCH! God bless you all, and I will update again from Memphis....
Megan

14 May 2009, 10:19am EST
We are home now. Kara is better, but we still are encouraging her to drink more. Her labs on Friday were alright, but her liver enzymes were elevated. Dr. Furman didn't think they were too high with her having a virus, and also considering all the meds she has had. She had a chest x-ray Friday after her N. Pract. had a little trouble getting good breathing sounds while listening to her chest. She heard a little bit of wheezing, and thought maybe a good cough would help, but wanted to be on the safe side. The x-ray was fine, and we got the clear to head out of town. We made it into Ky late that night, so we didn't get to be at Mamaw Gert's visitation, but we were able to be at the funeral on Tuesday.

This has been one week we have had. Friday we were given about 4 options to consider, so it's now time again for us to make another decision. 2 options are research studies, that I believe are similiar to the antibody study she just tried last week. We need to find out if Kara is even elible to take part in those considering the trouble she had last week. One of these studies just opened up. So, if Kara is able to be on it, and we choose this route, we would need to leave back out this Sunday for Memphis. The other research study won't be opened up for another couple of weeks. The other two options are chemo. One is oral, and the other is more intense, and it's i.v. chemo that involves 3 drugs, 2 of which she has already received. I am waiting right now on a call back from Kara's N. Pract.. They want to make sure she's still doing good, and hopefully will be able to tell us if she's eligible for the research studies. Dr. Furman did tell us that if we need more time away, that was okay, too. If we do wait to return to St. Jude, Kara will need to have her liver enzymes re-checked here, just to make sure that they are okay.

One thing that I want to clarify is the results of Kara's latest scans. In Jan./Feb., we were told that the CT of her chest, abdomen, and pelvis was stable, that there was scar tissue. Her MIBG was clear, but her bone marrow showed a rare suspicious clump. Because of the clump, they suspected it was still Neuroblastoma, and Kara was to use oral chemo.

On the latest results, we were told she had some residual disease on her CT, and the MIBG had a faint spot on her leg that glowed. Her bone marrow also showed a clump. (The nature of this disease is it is a "sticky" tumor, and it all depends on where they put the needle in her when they get a sample of bone marrow - whether they will hit a spot that has tumor in it or not.)

On Friday, I asked Dr. Furman if we were dealing with recurrance of her cancer. He said that it probably never was gone all the way (the clump in the bone marrow ), and he thinks her cancer has "picked up steam." (the faint spot on leg from her latest MIBG). He doesn't know what the right route of treatment is either. I do know that God is good, all of the time, and we need to keep the faith, and trust Him to completely heal Kara once and for all of this horrible disease. I know that His timing isn't always when we would prefer it, but it will be the right time when it happens. So, please keep praying for us as we try to decide what's right. Please keep praying for my cousin's baby boy at Riley Hospital! We love you guys!

God bless,
MeganPlease be praying for us. We want to do what's right, and as you can understand, we are a little pressed for time to decide if we want to do the research study that is currently opened, and that's even IF Kara is eligible.

10 May 2009, 8:11pm EST
We took Kara back over to the Hospital, and her chemistries were all normal except 2 liver enzymes were on the high side. But, they said she looked good, and her chemistries concerning the deydration were all normal, so she was disconnected from her bag of i.v. fluids. She still isn't completely herself. She still gets tired some, and ever so often complains about her tummy hurting. She also still has the cough she has been having from her virus. I just hope she feels like drinking more on her own, though.

We have been to the mall again today. Kara perked up yesterday evening, and wanted to go last night, so we took her and we rode the carousel, looked around some, and the girls picked out some new toys. They had fun! Well, today we went back again and they rode the carousel and Tony got a haircut that we've been neglecting to get done at home. On the way there, Lauren had their toy purse strap in her mouth, and Kara pulled on it to get it out of her mouth, and now Lauren has a loose tooth! It started bleeding, and it hurts when she eats, so time will tell if it tightens back up or not.

I talked to Erica & Brent today. They were spending the day with my parents. My brother and his girlfriend went over too, and they all visited together. I asked Erica if it was raining at home, and she said no, it's sunny. I told her it was raining here, and she said you just need to be here, and you can talk to Dr. Furman over the phone. : ) Then, later on I talked to Brent, and he was asking me when we were coming home. I told him I didn't know, that we'd know more tomorrow when we talked with Kara's Dr. The kids are fine. They have had fun while we've been away, too. We just originally thought for sure we'd be going home tomorrow. Now, we don't know what the details of Kara's options are. Tony was telling me he asked Kara yesterday if she was feeling o.k. Well, she went on to tell him that the medicine she got (antibody) cut her air off. So, she just can't handle that antibody treatment, an it's definitely not the right thing for her.

Please be praying for Papaw Butch, and the family. Mamaw Gert passed away today. Her visitation is tomorrow night, and the funeral is Tuesday. She will definitely be missed. We should know more tomorrow about whether or not we will be able to go to Ky. Please also pray for my cousin, Krystal and her baby. Her little boy was sent to Riley Children's Hosp. in Indianapolis last night. He was having seizures and they need prayer! Please remember them, too! I'd really appreciate it!

Well, we need to start baths and laundry, and we need to pack up because we're checking out of here before we head over to clinic in the morning. This is our last scheduled night to stay here at the Grizzly House. But, that could all change tomorrow. Please pray that we do the right thing - that we'd do what God wants us to!

Have a blessed night, and I hope you had a special Mother's Day!
Megan

09 May 2009, 7:00pm EST
Well, Tony woke kara up last night from her 8 o'clock nap to try to get her to eat and drink. She didn't eat, and drank only a small amount. She did get happy, and played around in the room for a while. So, this morning, she woke up, was thirsty, and went right back to sleep. Around 10:30 a.m., Tony tried to get her awake, and she was just SO TIRED. She was content to just sleep . She did wake up, and was ready to doze right back off to sleep again. She wasn't acting like herself, and she didn't have any output in 12 hours. She was also sweating. We have noticed her sweating while she sleeps since Thursday p.m. I called the On-call doctor, and explained things. She ordered labwork and i.v. fluids, and a urinalysis. Her counts are great....they have risen since she was in-patient, but her chemistries show that she was dehydrated. This explains most of the reason why she wasn't feeling the best yesterday, too. Her ANC is 6200. Her white blood cells are within the normal range, but high for her. So, my opinion is she's fighting off something, along with the dehydration. Hopefully it's the virus she already has, and nothing else. She is NOT running a fever. She is currently on i.v. fluids, so she is connected to an i.v. bag of sugar water that's in a black bag that you carry around like a purse. This is great that we can do this and be out of the hospital at the same time. I ran to the dollar store to get a few things, and grab lunch, and Tony just came back from taking the girls for another ride in the wagon. Kara still is just content to hang out in the room and take it easy here. You can tell she's still not up to par like her usual self yet, but the fluids have helped her. She is eating the peanut butter out of the middle of her crackers right now. She does have a desire to eat today. Whatever she drinks today is just a bonus, because she is receiving enough fluids through her i.v. that she will need. She is due back to the medicine room (kind of like an after-hours clinic, or E.R.) tomorrow morning to double check her bloodcounts. Since this is being done tomorrow, we won't have her labs checked Monday a.m., just a meeting with her Oncologist at 10:30 Monday a.m. Well, that's all I have for now. I will post more tomorrow. God bless!

Megan

08 May 2009, 8:08pm EST
I'm sorry I didn't get yesterday's update sent sooner than I did. Please be sure to read the entry before this one!

Kara is currently sleeping right now. We are at the Memphis Grizzly House. She had some coughing last night at 1 a.m, and the nurse wanted to know if I wanted Kara to have a breathing treatment for Kara. I didn't think it would probably do much good, so I didn't have them do it. The cough was short lived, and she was fine. It wasn't the reaction-type constant cough. It was very short lived.

So, this morning not long after she woke up she complained with her belly hurting and having a headache. We have given her 2 oral doses of anti-nausea meds since being discharged. She is doing okay, but seems over-all like she doesn't feel the best today. I remind myself of all the meds she was given over the past couple of days, and all the coughing she has had, too. I wonder if she's just worn out and adjusting to not having the meds now. Don't get me wrong, she has had some really happy times today, too. She has been outside at the playground here where we are staying, has played in the playroom with Lauren, took a trip to the vending machines, and Daddy pulled the girls in a 2-seated wagon. The girls really enjoyed that today. It looks like we will probably have a wet weekend, so tomorrow we may head out to the mall. It will be good to get a good night's rest tonight, and not have to deal with appts for a couple of days. We are tired, and didn't feel up to the trip back home today, having to turn right back around to return to Memphis on Sunday. If Kara's appt. was later on into next week, we would've went home, but Kara doesn't have any appts. until Monday a.m. At 9:30 she has labs, and @ 10:30 we go over the labs in clinic and meet with Dr. Furman to talk. I will let you know how that goes, but I plan to update over the weekend, too, to let you know how it's going here. Please keep praying for Kara. Please remember Papaw Butch's family, and his Mom, Mamaw Gert. (Tony's Dad and his Mamaw. ) We have pics when Mamaw was in TN visiting while Kara was at home on one of her breaks from treatment. They don't believe it will be much longer that we will have Mamaw Gert here. She hasn't been awake for a few days, and she hasn't had anything eat or drink for a few days, either. At the beginning of this week they unhooked her from i.v. fluids. She has pneumonia in 1 lung. Please be praying for her and all the family. Thank you for the continued prayers!

Megan

07 May 2009, 11:30pm EST
Well, I will try to update again. I just lost the last one I did! We did decide to try a 2nd attempt with the antibody infusion today. It was infused at a 50% slower rate than yesterday, and Kara was premedicated with zantac, benedryl, tylenol, cough suppressant, morphine and she was given a breathing treatment before it was even started. 2 hours into the infusion, her coughing began.Tony told her nurse to stop the treatment. She was given about the same exact amount of antibodies as yesterday when it was stopped also. After the medicine was stopped, she was given 2 albuterol breathing treatments, benedryl, & tylenol with codeine. Her coughing continued. It was decided to try a new med in her breathing treatment that they sometimes give people in the e.r. when they have croup. By the time this was given, her cough had already started to slow down. After all of this medicine was given, Kara still wasn't completely over her cough. We had the option to try the antibody a 3rd time, but she still had 6 hours worth of medicine to be given, and I don't know what would've definitely happened if we would've continued further. I do know yesterday, she was worse than today. Today, SHE DIDN'T HAVE ANY PAIN WITH THE ANTIBODY INFUSION, and for this in itself I am thankful. She did suffer yesterday, and the pain was temporal. Yesterday at one point, one of her expressions reminded me of when she was recovering from her surgery to remove her tumor. But, today there was no pain with the meds, and she was even able to play during the coughing. Her nurse played tea party, baby dolls, and nurse with her today. But, you know, we think if we tried this again for a 3rd time it's pretty likely she still would experience the coughing. We have decided NOT to continue this antibody therapy. We do know that there are potential promising results from this treatment, but no one can say for sure if it would've definitely benefitted Kara personally. We wouldn't know without pursuing it further, and we are not doing that. There are other treatment options to consider, but we still need to talk to her Oncologist about everything. We haven't spoken with him since he saw her during her coughing reaction today. I do know that Kara sure does seem to be a sensitive one! She is a funny kid, too. Tony and I have been taking turns staying in the room with her, while the other one stays in the parent room beside her's with Lauren. Last night, it was Tony's turn to be with Kara. He had dozed off, and Kara was pushing the buttons making her bed rise. Tony told her not to do that, that she could get hurt, and she said, "I'm alright Dad, you can go on to sleep." Then, this a.m., Lauren was loving on her, and she told her to quit, that she was freaking her out. Since they unhooked her from her i.v. fluids, and everything she has been like a bird let out of a cage. She has been able to visit the cafeteria, and play on the 2nd floor where the library and open sitting area is at. Well, I want you all to know that we appreciate you, your prayers, and support! Thank you for everything!

Good night, and God bless! I will update again tomorrow!
Meg

05 May 2009, 8:20pm EST
Well, the first day of the study did not go well at all for Kara. Into the first hour of the infusion of antibodies Kara started coughing. The coughing continued, and then she started saying her legs hurt. They paused the infusion, and gave her a breathing treatment of albuterol, even though they couldn't hear any wheezing. Kara was in very intense pain for about an hour and a half, and the coughing continued for 4 hours, with only 1 break of no coughing. She has had 3 doses of i.v. morphine, and had about 4 breathing treatments so far . For the most part, these breathing treatments seemed to help to calm her if for no other reason. She complained with her stomach, but we all think that was just from all the coughing. They gave her zantac for her stomach. She has also had i.v. benedryl to help with the coughing. She was pre-medicated before the infusion of antibodies with tylenol, and also benedryl. Another child had the coughing episode, but not as severe as Kara. She was having I guess what you would call asthma coughing "symptoms" due to the antibody. She didn't have the lower respiratory problems, and she didn't experience the closing of the airways. It was almost a constant cough. The infusion started about 10:20 this a.m., and at 3 p.m. the coughing reaction ended, and she was able to sleep for about an hour and a half. She woke up like a different child. She's ate 1/2 cup of pudding so far, and is eating chicken nuggets and mashed potatoes and gravy now. She is also hooked up to i.v. fluids to help keep her hydrated. During the worst, her heart rate went up to about 195. The attending Dr. was in here, and saw her with a clinched fist, and at her worst. At one point, she said, "I need a Dr." and she asked for a breathing treatment at one point, too. They also let her have an oxygen mask for a while to help her. She was having an allergic reaction to the antibody infusion. Today was rough. Our goal was to get her calmed down. She is doing good now. She still has a cough, but it's not the cough she was experiencing from the infusion.

Please be praying for us. She only received about 40 minutes of the antibody (supposed to receive 4 hours worth.) We spoke with the attending Oncologist, and he said we have reason to think about this tonight. He saw her today, and understands what we have faced, and what we need to consider. There is possible promising results with the antibody treatment, but at the same time we need to weigh out what she experienced today. From what we understand, the pain part should get better. But, he also couldn't tell me if she would experience pain each time she would be infused if we continue the medicine. Kara's nurse said another child experienced pain. She didn't think it was as bad as Kara's, but it was pain during the first day of the treatment. The second day, he was able to be up, and play. The attending Dr. wasn't as concerned with the pain today, as he was the coughing Kara experienced. It took a while to get that part under control. We have the option to have her premedicated tomorrow a.m., with some of the possible drugs being: codeine, benedryl, albuterol, dexamethasone (I think), and try the infusion at a slower rate, and if Kara's symptoms continue tomorrow, the antibody would be stopped, and that would be it. We need to make a decision by in the morning (I have never really cared too much about having to make decisions.) I do need to add Lauren's been a little angel today, but I can tell she's getting tired and bed time needs to be soon for her (actually it wouldn't hurt for it to come soon for us all!) I know at one point it was hard on her to see Kara like that, but all is going smooth now after what happened today. Please keep praying for Kara and for us. God is good...all the time.

God bless & Good night,
Megan

05 May 2009, 9:45pm EST
Well, Kara hasn't ran a fever any today. We are currently at the Memphis Grizzly House. In a little while we will be heading over to the ICU step-down unit to sleep. They will start Kara on the study in the morning - maybe around 9 or 10 a.m. Kara will be inpatient until Sunday, and then on Monday 11th we will go to clinic, and head home afterwards. The infusion of antibodies last about 4 hours each day for 4 days, and will continue every 28 days if everything goes well. This will last for about 4 months. So, if she can continue this study, we should be completed with this treatment in August.

Her ANC has dropped down to 900. (This count was close to knocking her out of being able to start. The protocol calls for her ANC to be at least a certain number. Whew!) Her N. Practitioner says viruses will drop her counts like this. She has seen about 5 kids with the exact same cough that Kara is having. She is also having a runny nose. She also had some protein in her urine sample, but probably means she just needs to drink more. She has had a good day today. She has done a lot of coughing, though. Her lungs are clear, and all of her cultures from the E.R. in Knoxville are still showing negative. Sounds like she just caught a virus. None of the above affects her getting to start tomorrow. Please pray for no adverse reactions or side effects. We will be going to clinic in Knoxville more often for the 1st 2 rounds of this study, for bloodcounts, and blood tests. Well, please keep praying for Kara that all goes smoothly this week. I will update again tomorrow if it works out that I have the chance.

Good night & God bless!
Meg

05 May 2009, 5:19am EST
Thank you all for checking in and praying for Kara & all of us while we were away. Please continue them! After a quick & busy weekend, we are heading back to Memphis in about an hour.

We got in around 7 p.m Friday, then, Saturday Tony worked while I played catch-up around home. Saturday was very busy around here! We were able to make it to church Sunday night, and it was helpful for us. About midnight Kara started running a fever. We spent the majority of the night going to Knoxville e.r. So far, the blood cultures are negative, and her flu test (Influenza B) and chest x-ray were negative. They also did a bronchial/walking pneumonia test and it was negative. We believe she has a virus. Her counts had dropped, and she has a cough and runny nose. Because of the fever, we weren't able to leave for Memphis yesterday. Her Dr. was concerned, because if she was still running a fever this morning, we wouldn't be going to Memphis, and it could've possibly affected her being in the Antibody study. We prayed for her last night, and this morning, her temp is lower, and not what they would consider in the range for even calling about. We are Memphis-bound!

When we left Friday to head home, Kara said, "I'm going to miss them." Tony told her we would be back, and then yesterday, both of the girls were crying and I think even Brent was a little emotional as the kids were going to school, and we anticipated leaving. Brent was happy to know after school, that we hadn't left yet!

I thought Kara was being admitted today, but I think we just have an appt. for labs, and we have to sign the paperwork with her Dr. today. I think she will be admitted to either the ICU stepdown or transplant floor tomorrow. THIS IS JUST SO SHE CAN BE CLOSELY MONITORED ON THIS STUDY. She will begin the study tomorrow. So, far there has only been 1 of Dr. Furman's patients that had some coughing during the study. The antibody is supposed to pull Kara's immune system along with it, and recognize Neuroblastoma cells as foreign and attack the cancer cells. This will give her immune system a break from the chemo she's had. Well, I will try and update from SJ while we are away. I really need to get the ball rolling this morning so we can leave, but please keep praying for our girl! We are still trusting and believing in God! He never fails, and He is still walking right along side of us! We are thankful for the strength HE PROVIDES US! We appreciate you all.....

God bless,
Meg