30 January 2010, 9:24pm EST
Well, I guess there's not a whole lot that I need to report, but just in case anyone is wondering, it's just been pretty boring and we've had some long days.......

Yesterday, Kara had the new chemo, along with the other 2 drugs she's had before. We were late getting started, due to getting a urine sample. Actually, we ended up needing two, because Kara's PH level wasn't good enough for the chemo to start. That delayed getting Kara's premeds & chemo by 3 hours. We also found out she has to stay at the Hospital for 6 hours of i.v. fluids following the last chemo. I think by the time we made it back to the Grizzly last night, it was 15 hours later! I shouldn't sound so negative, I know. At least we weren't inpatient, right ?!!! Being outpatient, we can also sleep in a real bed.......It felt so good, too! As soon as Kara got her bath, and took her night meds, she was out!

Kara didn't have any allergic reactions, thankfully. I think clinic was concerned because she's known to react. She did experience some tingling/discomfort in her hands yesterday, and today. It is nothing that is too bothersome for her, though. She also had a raised temp. today....It never officially spiked as what you'd say a fever is, but I was concerned it would. Fever is a common side-effect of the new chemo. :( She is given Adivan, Benedryl, & Zofran all before she gets chemo. She hasn't taken a nap any. She has been so good......She is such a trooper....I know I say that often, but she does so well with what she needs to do medically. She has one more day of chemo to go. Then, we will meet with Dr. Furman on Monday, and see what the plan for going home is. I don't know what her bloodcounts are. They are just checking chemistries so far, during chemo. We should know on Monday what her counts are.

Please be praying that when her counts fall, she doesn't experience a fever, please! She has acted pretty quiet and sweet for the most-part today.. She's not too perky, but she sings, plays video games, etc. She has wanted to do some schoolwork. We did a little practice stuff yesterday, and reviewed some things today.

Well, I will go for now....Stay warm & safe !!!! It sure is icy & cold here!

Meg

28 January 2010, 7:47pm EST
Okay, so things haven't went like we expected they would! I think I need to get used to this because that's how things go a lot of the time! Dr. Furman said that, "The Inn is full"...So, he wanted to know if we wanted to wait until the morning to see if an inpatient room was available for Kara to be admitted. If one wasn't ready, we could go ahead and start chemo anyways, as outpatient. I told him I preferred being outpatient, so, he went ahead and had things scheduled to start at 8 a.m. in the morning. The chemo will be given in the medicine room. When the infusions are through, we can come back over to the Grizzly House. They also are starting the chemo early, so if any reactions happen, they will be there, too. We need to keep Kara out of the cold as much as possible, and keep her away from food/drinks that are cold for 1-2 days before she gets the chemo. We have been working on that today......They have found that these things can contribute to unwanted side-effects of the new chemo she will get tomorrow. Hopefully, Kara won't experience any of them! Tomorrow is the only day she will get the new drug. She will receive the other 2 drugs on all 3 days.

Another thing, if I understood it right, Kara WON'T be getting the G-shot this round. If Kara needs it for round #2, she will get the new "1-dose G-shot" then.

Also, we'll be getting Kara's Radiologist's input on radiating some of her spots, and if it can be given at the same time as chemotherapy. I guess I will know definitely what is going on in that area when that time draws closer. We need to get past this first round first, and we also need to see what her re-evaluation results are, and then go from there on the next round and radiation. That only makes sense......One day at a time!

Kara's bloodcounts from yesterday were okay, too. She has a cough, but her lungs are clear. It could just be from sinus drainage or Memphis weather....

Oh, and another thing, Dr. Furman said that we will have a clinic visit again on Monday. We will see what her counts are, and see how she's doing, and see if we get the clearance to return home......I sure hope we can !!! Well, everybody take care & stay WARM!!!! Brrr......

Megan

27 January 2010, 9:33pm EST
Well, I finally have some time to update again! It has been very fast-paced these last few days!Let me back-track to Friday.

First, we had an appt. with Dr. Furman and we got the official results.. The MRI is showing sinusitis, so Kara has been on an antibiotic to clear that up, and we are under the impression that there isn't tumor around both orbits. BUT, there IS glow (MIBG scan shows "glow") under Kara's eyes. I know, it sounds like I am contradicting myself here......There is cancer in Kara's right femur, and also on the right side of her skull. The skull is the place that has some "thickness", and it is protruding inward. This is the only place that is planned for radiation. He wants to start this before it causes problems. There was no need to discuss the radiation Friday...There will be time for that when Kara is re-evaluated in 3 weeks. At that time, there will be scanning, and also a bone marrow biopsy. As long as things are stable, we would proceed with round #2 of chemo, in conjunction with radiation to the skull.

There was no need to put Kara through another bone marrow biopsy last week. Dr. Furman said she has been through enough, and he didn't feel like it was needed this time. We did find out the last bone marrow sample they received was "negative" for cancer, although the latest scans that were done last week were all are "hotter." It's all in where they put the needle when they gather her bone marrow sample, as to whether they gather a spot of marrow with tumor in it, or not. He said when they do another bone marrow sample in 3 weeks, if we get a sample that is positive, that doesn't mean she is worse than now. This is a "sticky" tumor we are dealing with. There may be various spots in marrow, but the "negative" and "positive" depends on whether or not you get a sample with tumor in it or not ........I hope I am not confusing anyone.

We were not able to start chemotherapy last week as planned. There needed to be, at least, a 21-day break before beginning a new study. It was realized Friday that we couldn't start right away. We went ahead and had her EKG and hearing evaluation last week before heading home. These are just baseline tests before starting the new study. Her hearing is the same as last time, and we received encouraging news, that with the new chemo she is getting ready to receive, they haven't really seen it do a lot of damage to children's hearing. It is wonderful to know this ahead of time. Her hearing will be monitored while she is receiving this chemo. So, with the break, we decided spur of the moment, we would make a trip to IN to see our family. My Papaw is having an 84th B-day party the beginning of February, and had we stayed on the same chemo that she was on previously, we would have been able to make it. Well, with the changes that are going on, it didn't look like we could make it for the get-together. It is so hard to plan ahead, so we ran home Friday, unpacked, did laundry, saw Erica, Brent, & Lauren, and our parents, and repacked. We got up early Saturday, and headed North. We had the best weekend with family and friends. It was great! We laughed so much, and the kids had a lot of fun, too. We really had a great time visiting with people that we hadn't seen in a while. My parents were able to go to IN, too, and we had a get-together at my Aunt's house on Sunday. We really needed this get-away....We went to our old church, too, and had some wonderful services....I will try to post some pics before long...Last week I was able to upload a few new pics if you want to check those out.

Kara will begin the new study of chemotherapy tomorrow. She has already had labs tonight, and her weight is higher than it's been in I do not know how long. She weighs 44 lbs.! I will find out her labs tomorrow in clinic. We have a morning appt., and then admission to follow. She is due to have 3 days inpatient i.v. chemo.The chemo she will receive is 3 drugs. Two she's had before, and 1 is new. Dr. Furman told us that the drug she hasn't had before has shown improvement of cancer just by itself. We will see in about 3 weeks what has happened. Some of the side effects are fever and low bloodcounts. We will be able to return home after chemo, and if/when these effects happen, she will be seen in Knoxville Hospital. There is a possibility that she will need the G-shot to help boost her white blood cells. But, a goal of this study is to find a dosage where the G-shot is not needed. So, round #1, we try to get by without the shot. But, if Kara needs it, she will get it. Also, good news in this area, is that a new longer-lasting shot has been approved for Kara's age. It is a 1-dose shot. That is also very encouraging to know, that if needed, she probably won't have to deal with the G-shots daily...just 1shot ! :-)

Mom was able to travel with me this time, and Tony is holding down the fort at home. He is doing an awesome job...Erica, Brent, & Lauren will get to spend time with his parents this weekend, while Tony works, and hopefully, we will be back home Monday! Please pray that Kara has an "successful" hospital stay, and that things go smoothly for her. Her Teacher gave us some work for her to work on, and I am hoping that she feels up to it. She so loves being at school. She was able to go some yesterday and today.

Well, I have "rattled" enough, and I will try to update as things go along this weekend.

God bless,
Megan

21 January 2010, 7:57pm EST
The battle isn't over yet.........

We talked with Dr. Furman, and from what he could tell us, the previous spots that she had are worse. (He was hesitant to tell us a lot of details because one of the machines that they use to read the results with broke.) He thinks we need to move onto something more intense, and stop the current chemo she just had. He said we should have the results by in the morning, when we meet with him in clinic. He told us this tonight so that we could be thinking and making plans. He printed info. about a different study that she hasn't been on for us to familiar ourselves with.. Two of the 3 drugs she has had before, but it's been a while. The 3rd drug is platin-based (which is the type that causes hearing loss), but this particular drug isn't as hard on hearing as the other platin-based she had previously. It is given by vein, so they will use her central line to administer it, and it will be in-patient for 3-4 days here at St. Jude. We can start as early as tomorrow, or we can go home for the weekend, and then come back. We have decided that I will stay here with Kara, and begin Rd. #1 tomorrow. Tony will drive home tomorrow. He is scheduled to work this weekend. Mom will be able to drive out here on Saturday, to help while we are here. This treatment does cause low blood counts, and also fever. So, we can expect this as we move along. I'm not exactly sure if she will be given the G-shot or not, with this treatment. It was mentioned, but I don't know the plan. One other thing that he told us, is that following round #1, she will also need radiation on some of the spots of cancer. When we return to Memphis after this new round #1, Kara will have all the technical stuff done that Dr. Pai, her Radiologist, needs.. Then, the radiation can begin. When we get to that point, and I know more, I will let you all know. Nothing is written in stone yet - We were just getting an idea so we could try to decide, and make plans. We will know more tomorrow, and I will update again. For now, we are going to take a ride in the car, or do something non-hospitalish! :-)

Kara is still doing well. She is a joy..... We will talk with the kids tonight, and let them know what is going on, too. Please keep praying for Kara Grace!

Good night & God bless,
Megan

20 January 2010, 8:24pm EST
We arrived around 11, and our room wasn't ready for us, so we grabbed lunch before heading to the hospital for Kara's appointments. She had the injection of her "glow medicine", then we headed over to assessment & triage. We did get awesome news. I guess we had hint of this, because when we pick Kara up she feels heavier, and yesterday, she told me that her shoes were tight. We found out that compared to 3 weeks ago, she has gained 1.98 lbs. She now weighs 43.34 lbs. She has grown in height, and her head has also grown in circumference. It is so awesome to see her thrive this way.

We got her lab results & it was so awesome to hear that Kara's ANC was up from 600-700 last Wednesday, to 3500 today! To think that a few years ago I didn't even know what an ANC was, and then fast-forward to now, realizing how much this number means to us.. Her platelets and red blood cells were near normal, too...

Her electrolytes were good, but the Nurse Practitioner said she probably just needs to drink some more, because a couple of her "numbers" were higher than normal. Because of this, and since she will be fasting some tomorrow we are working on that tonight....

Kara really is feeling great! We haven't done anything exciting....just been hanging out here at the Grizzly House. She did excite me though, when I realized she really is roller skating. She has figured it out! It was so cute to watch her, and of course she was happy about it!

Tomorrow she will have the MRI & MIBG, and afterwards we'll meet with Dr. Furman....
Please pray for the best.....We'll update tomorrow when we know something...Thanks for checking in!

19 January 2010, 9:25am EST
Well, it's that time again...Time to pack, and head out to Memphis. We will leave early tomorrow morning. Kara's appts. begin at noon on Wednesday. The MRI of her brain and eye orbits, along with her MIBG scan won't start until Thursday. There won't be a bone marrow test this time. We just need to know whether the scan reveals whether the orbit around her other eye does indeed show some "glow" (meaning cancer), or if it is not showing cancer. (3 weeks ago, the Radiologist was questioning the MIBG, as to whether or not there was "glow" around the other eye.) This is the whole reason for these scans to happen this soon again.
Please pray for Kara's complete healing of this disease. We appreciate it!

Note: I have posted a few new pics to shutterfly...Just click on the tab at the top of this page to view. Enjoy!

15 January 2010, 1:48am EST
Kara's counts have dropped pretty low. Her defense is definitely compromised. We've taken note on how a few days ago she'd have times where she'd be quiet, and would take "time-out" to rest while she played, and how that now, she has more energy.. We would like to think she's on the mend with rebounding bloodcounts. There's no way to know for sure unless labs are drawn again. We won't get her counts checked until we are in Memphis on Wednesday, though - unless she'd get a fever between now & then - Let's hope not!

This weekend will be busy doing things around here to get ready for next week's trip....Please continue to pray & believe!!!

Meg

12 January 2010, 11:09pm EST
When you think you're having a bad day, there's always some one who has it worse. Please remember the Melton family. The mother of Victoria Melton has been told they can keep fighting or go home and be happy....Victoria has relapsed twice in 1 year....This is their 3rd go-round with leukemia...The mother lost her oldest (8 yr. old) son, March 2009, in a house fire. She has 2 other children....Please be praying for the Melton family....www.caringbridge.org/visit/victoriamelton. Doesn't this just pull at your heartstings?

Overall, Kara has been doing well. We will know on Wednesday what her bloodcounts are. She has been acting tired at times, but she is playing & eating. The kids have been sleeping in, and enjoying their time off from school....Well, Erica still has school, but she got a day or 2 off! This week's been a little off-key from the usual routine. Next Tuesday evening, we'll get to see Brent participate in the County Spelling Bee (We're proud of you, Son!) and then the next morning Tony, Kara, & I will be heading out early to travel to Memphis again. (Yes, it's that time already.) Kara will be getting an MRI of her brain, and the orbits around her eyes, and also a full-body MIBG scan. This is the specific scan for Neuroblastoma, that will show "glow" where there are Neuroblastoma cells. I know you all know the usual request...Please pray! I heard a preaching CD about praying "the prayer of faith" & what does it sound like.......It was VERY encouraging!

I am SO hoping that we can at least stay on this current chemo regimen.....If there is unfavorable news from the scans, we will have to look into different options. I appreciate you all praying!

God bless!

08 January 2010, 1:40pm EST
Well, this past week's counts were still pretty good, although her ANC is falling. It still isn't TOO low yet. She is feeling pretty "chipper", and is looking forward to spending the night with her cousin and sisters at her Mamaw & Papaw's tonight.

Wednesday ended this round's chemo. I'm not sure exactly how it happens, but we can tell nearly immediately how much her appetite increases when she starts it. It also messes with her moods, and for the most-part in a positive way. She is funny on it. A lot of times she seems pretty laid-back and happy, although she still has some "weepy" moments. She was pretty talkative in church Wednesday. Then, later that night, when we were finished snacking before bed, and she said so nonchalantly, "I'm stuck." I looked up, and she had her head stuck in the opening that is on the back of one of our dining room chairs. The way she said it was just like she was telling me that she has 2 arms....No big deal. She wasn't stuck long, and I'm glad there wasn't much anxiety. So, we are enjoying the positive effects that it has on her moods. I mentioned her moods and funniness to her Dr. in Memphis. He just mentioned, "So she's entertaining, huh? Keep Mom smiling." He also mentioned the moods were a side effect, but this round went very well! She even has little brown hairs on her head that are growing back in...

We are scheduled to be back in Memphis sometime during the week of January 20th. Dr. Furman requested another MIBG scan & also an MRI of her brain & the orbits. The last MIBG had the Radiologist questioning her 2nd eye orbit. These should clear the questions up. I'm not sure exactly what day we will be leaving on for Memphis. Right now, we are staying on this chemo unless her tests would show unfavorable news. Then, we would have to rethink our options. Tony will be going with us again for this trip...Hopefully, we will be back home as quick as our trip! (That was great!)

We've had some nice winter snow...In Indiana we were used to a lot more, so what we got is just enough to enjoy! Plus, the kids are out of school which I am really liking! Even Erica got the day off!

Well, I will go for now! Have a great weekend!!! I'll update next Wednesday/Thursday after Kara gets her labs from clinic, unless something unexpected happens before then!