28 November 2009, 9:04pm EST
We've had a few very relaxing days around here...Thanksgiving we went to my sister-in-law's to eat, then over to my in-laws house for a little while....Then, Friday, we spent the majority of the day at my parents' house. We had a nice visit with my brother, and his girlfriend from N.C. Today, we had a fun day--out of the house for a while having fun. Now, it's time to start packing for scan week which is right on us again. We'll head out of town on Monday, and come home, I'm guessing at the end of the week sometime....I appreciate all the prayers that you're praying! Love you all, Megan

I'd like you to remember my Dad, too, on Monday. He is having surgery...Thank you!!!!

26 November 2009,

25 November 2009, 4:55pm EST
Kara woke up today, and came to me with 2 handfuls of hair that she laid down on the counter.... She seems to be adjusting very well to having her hair fall out so rapidly. She has more scalp than she has hair now. She looked in the mirror and told me it wasn't long enough, and I asked her, "For what?" She said,"For ponytails/pigtails." But, Mom found a place that has a wig with pigtails/braids. It's shipping today, but I told her she doesn't have to wear the wig....We'll see how well she likes it when it comes....We talked to her about being cute without hair.....

Life is going good....I am thankful for wonderful family, friends, church, and THE LORD! He is what gets us through everyday, and gives us JOY to walk on this path, even when it's not going as we'd like. God is good....all the time. HE never fails us, and for that I am thankful this Thanksgiving..... We ARE blessed!

We will head over to my Sister-in-law's house tomorrow for dinner, and then head to my parents' house on Friday. We'll get to see my brother who's coming in from out of town, too....

So, we've got another weekend here at the house, before we head west for scans again. I was wrong when I did the last update. Kara won't see Dr. Malik before we go to Memphis...She was due to see him the week we will be at St. Jude's....
God bless you all this Thanksgiving!!!

Megan

23 November 2009, 6:23pm EST
Kara had a good visit in clinic today.....She weighs 40#, and her ANC is up over 2000. Dr. Malik wants to get it up high at around 5000 (which would be a normal level for healthy people!) He wants us to continue her last 2 shots. (This medicine will make her ANC rise.) So, Wednesday will be the last day for these for now....She has been GREAT with her last two shots!....Her hemoglobin is almost normal again, but her platelets are still low. They are at 44,000, where the low norm is 150,000. They are recovering on their own, though, so this is good news...We should be through with the transfusions this round.....

I was surprised that they wanted to draw more blood to culture again today, because she hasn't ran a fever. They tend to think that last week's culture that grew staph is probably contamination, and it's possible she could've been fighting a virus, too. But, that all ended well, and it wasn't a blood infection!

Kara won't need to be seen in clinic again until next Wednesday to be checked out before we head to Memphis on Monday, 30th. Her hair continues to thin out more....It's just hair, right?! Well, I will sign off for now! Take care!

I've added a few more pics to Shutterfly....Click on LeeShutterfly link above to view!

22 November 2009, 3:31pm EST
Well, this weekend we have put up our Christmas tree! We're not sure exactly what the next month will be like, and Tony was off of work this weekend, so we went ahead and put it up! Lauren & Kara remembered things from last year...They were so happy!

Kara's doing pretty good. She's had times here lately when she seems frustrated/upset. But, she seems better now. I wish this wasn't happening, but about the middle of last week while we were inpatient, Kara's hair started falling out. First, it was a strand at a time, where now it is a number of hairs at a time. It is REALLY thinning fast now. She seems okay with it right now. She says she wants a pink wig...Leave it to Kara. But, we'll see how she does with it, when/if it all comes out.....For some reason I seem to be having a rough time with it this time. I really hoped this wouldn't have to happen to her again. Mom's going to look into Locks of Love to see about finding a wig. She still has her eyelashes. Oh, and we never got that call from the Hospital that anymore bacteria grew on her repeat blood cultures, and she never ran another fever...Praise the Lord!!!

We are going to clinic tomorrow to see how her bloodcounts are. I will let you know when I find out how they look. Then, on Monday, Nov. 30th, Tony, Kara, & I will be traveling back to St. Jude for another evaluation.. She will have the routine tests that she usually has....CT with contrast, MIBG with "glow" medicine, and bone marrow biopsy and aspirate. I think they have added another EKG, too. I'm sure we will have to make more decisions regarding the choice of treatment for her.....Please be praying!

19 November 2009, 1:07pm EST
We are getting discharged today.....Kara's platelets have dropped again....They're at transfusion level, and her red blood has also dropped, but not much.....She won't need transfused for that today.....Please pray that her cells really kick in and produce on their own again! Today makes 14 days since her 1st chemo treatment in Knoxville.

The Dr. feels even more comfortable today about her, since she continues to not have any fevers. Nothing else has grown on the repeat cultures, either.....There still is a chance something could grow. If this happens, we will get a phone call, and have to come right back....If she was to run a fever, we will have to call them right away....Her white blood cells are going up, but they are still low ......

She acts like she feels good. We woke her up this morning to get her shot, and she was grumpy after that, but later on she perked up.....She was happy to know that she gets to leave today....We will have to have her seen again in clinic on Monday....Keep praying!

18 November 2009, 7:44pm EST
Kara is doing really well considering her bloodcounts are still low. It has been 13 days since her chemotherapy began. She is on an increased dose of medicine to help her white blood cells come up. They are rising, just slowly. Her hemoglobin and platelets have dropped. She did have a slight nose bleed...nothing major.....they aren't giving her platelets today since it wasn't an active bleed, and her counts really aren't at transfusion level, either. They will recheck them in the morning.

They have reason to believe that the blood sample they drew to culture on Sunday night is a contaminated sample (after it left Kara's body!) It grew staph. The i.v. antibiotic she was on (It has been stopped as of today.) isn't one that is used to cover this germ. All of the repeat blood cultures have not grown anything....even the original ones in the E.R. on Saturday are negative.....The plan is to repeat some more blood cultures now that she isn't getting the i.v. antibiotic, and see if anything grows, and to watch her temperature. She hasn't had a fever in 48 hours, though her temp has been elevated on and off since last night - which isn't normal for Kara. So, we will wait and see. If all goes well, I am guessing that we will be home sometime Friday. If she gets a fever, or the cultures happen to grow a germ, we will camp out here for a little while longer. So, pray for NO FEVERS and a RISE IN BLOODCOUNTS! Kara hasn't left the room since we've been here, but she is doing really well considering....She is staying occupied. Right now she has marker all over her! This should be fun at bathtime tonight. It usually takes me & Tony both to bath her in here, anyway! :-) She has been eating so-so. She has been keeping the powerade company in business, and has ate a lot of pineapple and candy!

Thank you to all of you who continue to show your love and support, and for all the PRAYERS! We appreciate your kindness and faithfulness, and believe in the power of prayer! I know God is mindful of us, and has this all under control. God is good. Keep praying!

God bless,

16 November 2009, 8:16pm EST
Kara started off the day feeling sick, and having a headache, then the day got a little smoother for her. She received a transfusion of washed platelets. She developed an allergy to unwashed (non-filtered) platelets at transplant. They actually "pushed" them in her central line with a large syringe since there wasn't a large volume of cells to give her. She's mentioned that she has another headache, but she is playing. Last night, she started running another fever around 11. She hasn't had a fever all day, until now. You know how they always seem to strike in the evenings...

Since she was given blood yesterday, she isn't considered anemic. Her red blood cells are within normal range. I will know in the morn'in how high her platelets rose. I know they will still be low, because her's were at 18,000 before they gave her some, and 150,000 is the low normal. She didn't receive that many! They say fevers burn platelets, too. One good thing is that her white blood cells are starting to go up, even without the increased dose of g- medicine.

She's doing okay....She's played pretty quietly today with Barbies and Little People. I'm still not sure when we will get out of here. I was hoping she wouldn't run anymore fevers, and we could shoot for Wednesday......But, thinking it'll at least be another 2 days, maybe longer if she runs another fever tomorrow...Pray for the fever to stop! They drew more blood to culture for bacteria in her blood last night. So far, Saturday & yesterday's cultures are negative......Pray they stay this way!

15 November 2009, 5:15pm EST
I just wanted to give you the "heads up" on Kara. She started running a fever last night, and is still running one now. It actually has risen higher, today, @ 103*. Her body really doesn't have much defense of it's own right now. Even with receiving the "g-shot" that's supposed to boost her white blood cells, her white blood count is only 220. Normal is around 5 to 10,000. These cells will recover, we just have to wait on them! She was admitted to Children's last night, and they have her on a scheduled i.v. antibiotic. They are increasing the dose of medicine in her shots. The cells will rise, we just have to wait on them! They have checked her blood to see if any type of bacteria is growing. So far, the cultures aren't showing there is anything. It is still early yet to tell for sure. This could just be her body reacting to her own "normal" bacteria, a bacterial infection in her blood, or she could have a virus. We just don't know yet. What I failed to ask the Dr. today, is how high of a temp the chemo Topotecan will cause since fever is also a side effect of Topo. They would like to see her fever-free for 48 hours, along with a rise in her white blood cells before we get out of here. If it turns out she does have a bacterial infection, we can use home health while outpatient. She could still receive her antibiotics while she's out of the Hospital.

As of this mornings lab check, her counts were still dropping instead of recovering. She is getting ready to get a blood transfusion. This will help her feel somewhat better. In the past, we have noticed her perk right up while she's being transfused. She will need to have platelets She is painting right now, which she really likes to do! We have had a UNO tournament, and played Trouble a couple of times today. I've learned she has found out how to cheat at UNO... :-)

Erica, Brent, and Lauren are being well-taken care of, too. I will let you all know when we know more of what's going on..It's just a waiting game right now.

Megan

14 November 2009, 10:59am EST
Thursday just wasn't one of Kara's better days.....She was about to head off to school, and she started hurting in her arm...the one with the device used for her G-medicine, that's used to make her white blood cell count rise. We took a look at it, and underneath the tape, it looked a little puffy, and maybe even a little puckered. A call was made to the clinic, and they said we could remove it, and they could insert a new one, or we could just remove it all together. If it was completely removed, we would go back to plan A, and she'd have to receive the daily G-shots. Kara decided that she wanted it out of her arm. Tony removed it, and we're wondering if the puffiness is caused from the tape that held it in place. She is sensitive to certain tapes, but the device also looked like it had been shifted just a tad, too. Who knows for sure. But, it's out, and she had received her dreaded shot....We are going to move the time back a couple hours each day so that by Monday, she'll be getting these first thing in the morning, and then she won't spend the mornings dreading it in the afternoon.

Anyways, I found out later in the day she said that the reason why her arm might have/probably was hurting was because she wasn't supposed to move while I gave her the medicine. I told her that SHE was not the reason why it was hurting her.....I didn't even know that had crossed her mind.....Mom ended up taking the twins to Wal-mart so she could pick out a "bravery" toy....Well, Lauren came home with one, too.... :-)

We can tell that the chemo is starting to wear on her. Her stomach bothers her at times, and she's not eating as well. She isn't acting as perky, either. Her counts are right in the time frame to drop. She is still taking the maximum dose of medicine for the nausea. Even with this, she still has times that her stomach bothers her. I pulled out some old papers from St. Jude when Kara had Topotecan before. I now remember being told that the first week is usually a good one, and the 2nd week is when some of the side effects happen. She still keeps going though, and has good times, too! Yesterday, we took the kids to pick out tennis shoes....It was good to get out and do something that wasn't revolved around health issues. It was fun- Tony was able to go with us, and we found some for all the kids -all in 1 day! ......Mission Accomplished! : -)

Pray that we get through this round without any setbacks. I hope her bloodcounts aren't to the point where she would need blood & platelets this week....It's been so long since she's had to have any transfusions....I think the last time she had any was May/June 2008 following her transplant. Please keep praying for NO FEVERS! Well, I better go - lots to get done today! Thank you for your continued prayers & support! We love you guys!

Megan

Check out some new pics that were recently added to our shutterfly account...Click on the link at the top of this page to view!

11 November 2009, 7:22pm EST
Kara went to school today.....She seemed to be doing pretty good. She has complained with her belly hurting her this afternoon, though. I have given her the maximum she's allowed to have of her anti-nausea medicine. She has had a tums, too. She is eating, but it seems to be slowing down today. I hope this passes soon. She didn't eat much of her supper, but she has taken a liking to pineapple..You would think this would hurt her stomach, but that's what she's asking for. She's also asked for hot chocolate...I've put it on the grocery list !!! Then, Erica's made it known she wants chocolate milk, and Lauren went with the flow, and asked for just plain chocolate...Good thing Tony & Brent weren't around! :-)

The G-medicine went okay today...I had Tony help by holding her, and he talked to her while I inserted the needle in her catheter. I think she was just not liking the fact that I was coming at her with the needle in hand. I let her know when the needle was in, and said, "See, you can't feel it." Then, I inserted the medicine. She did cry some today, but I think it may get better as we go along. It was something new (in a way) to get used to.

As far as I know, she will still be going to school tomorrow....as long as she's feeling up to it. She looked so cute today. I sponge-rolled her hair so this morning she had a bunch of curls....Little Cutie Patootie! Well, I hope you all have a wonderful Thursday!

God bless,
Megan

10 November 2009, 5:06pm EST
Kara is still doing good....I don't know if I ever said the results of Kara's viral culture that was done in Memphis. But, the results were negative. I think what we're dealing with is allergies! Her coughing is almost completely gone now, and she's left with a runny nose. She has completed her 5 days of cytoxan/topotecan combo.

She weighs nearly 41 lbs. now....So glad to see this....I told Tony today that she doesn't need a belt now with 1 of the skirts she usually needs one for. I am hoping that it's not all from the i.v. fluids. Her appetite is still great!

Her ANC has risen to over 2800, but her hemoglobin and platelets have dropped a little. Her counts should begin to really fall on Friday through next week. Please pray that she doesn't run a fever while they are dropping, and that they don't fall too low!

We had an unexpected GOOD surprise today. I was talking to Kara's nurse about the upcoming "G-shots" that we have to start tomorrow afternoon. She mentioned that we could try a device that's similiar to an i.v. that is left under the skin. Instead of poking Kara with a needle everyday, I can insert the needle into this catheter in her arm, to spare her the poke. We left the decision up to Kara. She said, "Let me think about it." :-) So, finally she decided she'd try it. I am so glad that she went this route, because I really don't like to give her a painful shot everyday. This device will need changed out next Tuesday in the clinic. But, other than that, there's not daily flushes, and extra maintenance like with her central line. I just need to make sure it doesn't get wet. It's just under the skin, not in a vein. The medicine is still painful when it's injected.. So, pray for her tolerance. She will need these probably over the next 10 - 14 days, depending on how her counts are doing.

Her hair is still intact. She found her old ponytail that we used to attach to her ballcaps that we had tucked away. She said she could wear that to school. At least she has some time to get used to the idea of it coming out, before (and if) it actually happens.

So far, Kara is doing really good. She and Lauren learned how to count to 100 this week. They are pretty happy with theirselves.... :-) Well, I better go....Supper needs fixed!

Keep praying that things continue to go well.....Thank you for all the messages & prayers....God is really helping us & I am so glad for the strength that He gives to keep traveling on!

Megan

08 November 2009, 2:57pm EST
Kara has had 3 of 5 chemo treatments already. She has kept a wonderful appetite..Praise the Lord for this....This morning after she woke up, she had a tummy ache, and ended up vomiting once. She still has drainage, though, so not sure if it was from chemo or not. We had a quicker day in the Hospital getting her chemo, and all went smooth. While we're away getting her treatments, I've been having Kara work on some of her school papers. I don't want her lagging behind....She is interested in doing the math work and some of her reading worksheets, but I can tell she loses interest in the actual "reading" work.I'm glad she is feeling well enough to work, though.

Our days have been consumed with Kara's treatment, work, picking up our other kids, keeping things caught up at home, etc....This just doesn't affect us, alone, either. We have to lean on others to 'hold down the fort' with our other children, too, while we're away. But, it is all working out, and we couldn't do it with out the help that we have....I'm sorry I'm delayed in answering some of the messages that were sent to me...I will get to them, though! Thank you, and I appreciate the guestbook messages and prayers that are being said for Kara, and us.

We are going to try to go to Church tonight. Mom took Erica, Brent, &Lauren this morning with her....Please pray that Kara doesn't run a fever this round, and that the rest of this round stays smooth for Kara.

Megan

06 November 2009, 8:22pm EST
Kara's labs looked good today: ANC: 1772, WBC's: 3.77, Hgb: 12.4, and Platelets: 147,000.

Kara received her first doses of chemo in Knoxville today. These meds will all be outpatient. But, tomorrow and Sunday we have to report to the in-patient floor of the Hospital for her meds since the clinic is closed. Chemo will resume in the clinic on Monday. Kara looks puffy in her eyes, but she's been "pumped" with i.v. saline fluid before and after chemo. She also has congestion, so maybe the reason is it's a combination of both. We have her on Zyrtec, and cough medicine. They are trying to keep her "isolated" because of her cough and runny nose. But, overall we had a decent day today. It was fairly long, and at one point she got pretty irritable, but for the most part it went smooth. Her appetite has been great. I wish it would stay like this, but I know chemo usually affects this. I mentioned on the way home to her, "We didn't have too bad of a day today, did we?" She said, "That didn't even make my hair fall out." There was another time before her chemo started, that she was getting just i.v. fluids, and she said, "My hair didn't fall out." So, obviously, this is on her mind. It's also listed under "Likely" side effects for both drugs that she received. She also asked me today in clinic how long will she have chemo. I asked her if she meant today, and she shook her head no. I told her I didn't know, and that I wish I knew. So, keep praying for her!

I took Lauren to the Pediatrician yesterday to have the wax cleaned out of her ears, and she isn't showing hearing loss in her left ear now that that's taken care of. That is good news! Mom took her back today. They've started her on an antibiotic in case a sinus infection is brewing on her....

We already got an email from ST. Jude's telling us that Kara's re-evaluation is to start on Tuesday, December 1st.....These days are zooming by us....Life is so busy!

We appreciate the messages and prayers....Keep praying

05 November 2009, 9:38am EST
I spoke with Dr.Malik's office, and Kara will start chemo tomorrow in the clinic. This is better, because she won't have to be admitted to the floor for the whole process.....It is a 5-day regimen with Cyclofosphamide (Cytoxan), and Topotecan. She has had both of these previously, but not combined. This will begin around 10 a.m. everyday. But, I'm not sure how long it will take for everything to complete. Dr. Furman said we were to expect long days, so I'd imagine it will be the same. But, at least we can come home when we're through. The more she's in the hospital, the more risk of coming in contact with another germ! I remember a nurse on the transplant floor last year telling me that the dirtiest house is cleaner than a hospital...Something to think about!

Since fever is a side-effect of Topotecan, we will have to be on watch for this. This is no fun because it's like we're "on-call" to be admitted if her ANC (defense) is too low when the fever strikes. Pray that we can avoid this!

Yesterday, our ride home required a lot more stops than when we headed to Memphis. We all got in bed late, so Kara's just now waking up, but wants to go to school today. Tony's helping her get ready right now, and off she'll go....She LOVES school !!!

Keep praying!
Megan

04 November 2009
Kara's symptoms seemed to be from allergies, so they took her out of isolation a.s.ap. But, since she still has a runny nose, they thought it was best to do a viral culture before we head home. that wasn't fun, but it will let us know exactly what we we're dealing with/or not dealing with, and whether she will need to be isolated in knoxville or not. dr. malik has agreed to do kara's treatment in knoxville. dr. furman is working on getting the paperwork taken care of today. in a few minutes we will be checking out of here, and heading home....we told them we decided on the cyclotopo combination chemo. i was refreshed a little on how to give the dreaded g-shot. i have to call malik's office tomorrow, and set up an appointment for kara. so, here we go....keep praying!

03 November 2009, 10:29pm EST
So, we were surprised again today, with a change in course. Kara's counts weren't high enough to start either of the 2 studies that were part of our options....Her ANC needed to be at 1000, and it was 900. It probably is a little confusing, but there really needed to be a 3 week break from her last chemo, before starting the study we were leaning towards. The previous study she just came off of could be considered, "immunosuppression". If we pushed forward now with one of the new studies, once things were on a roll, and something came up, how could we relate something to the new study, if, she is possibly still recovering (hence the ANC of 900) from the last chemo she just had...

So, this is where we need prayer.....What are we to do? They are rechecking her ANC tomorrow, and we are to think tonight about what we want to do. Options are:

Do nothing for couple weeks, and re-evaluate. Dr. Furman isn't too comfortable with this idea...It's already been 1 week with no chemo of any kind.

A 2-drug combo....CycloTopo....She has had both, but not combined. This possibly could be done in Knoxville.....The dreaded, painful G-shot (helps white blood cell count to rise faster) is involved. Even with the G-shot, it's a 50/50 toss-up of a fever arising during a course of treatment....A side-effect of Topo is fever. If this happens with too low of an ANC, there's an automatic admission into the Hospital.

Etoposide Cyclophosamide Combo. This would also call for the G-shot to be used.

Cisplatin.....Hard on hearing and kidneys.....I said I would rather not hit her kidneys hard, but....and then I stopped talking. Dr. Furman wanted to know what I was getting at. So, I said, I would rather not be hard on her kidneys, but we're dealing with tumor.

Also, I'm assuming that if Kara's ANC is 1000 tomorrow, we would be given the original option, of going forth with one of the two phase 1, experimental studies.

I guess what Dr. Furman is saying, is that whatever course of treatment we choose, is that we would hope to slow down the tumor, until we would re-evaluate (about a week after Thanksgiving.) Then, we could see where we stand, and what our options are at that time - with possibly still having the phase 1 experimental studies that we were given as options now, along with a couple of new experimental studies "in the works" right now. They aren't to the point where they can offer them to the kids yet, but that's something to think about, too. There could even be more possibilities in the near future, depending on how soon they are approved for using as treatment.

Since a Phase 1 study involves finding the highest safest allowed dosage, by the time Kara is re-evaluated after Thanksgiving, the dose could be upped enough to where she would also need the G-shot on the study we thought we'd be starting this trip.....I was hoping to avoid that with Kara.....

When I left clinic, I was leaning towards the cyclo-topo combo, and doing it at home, if possible. This is off-study, meaning it can be given at anytime. You don't have to wait until "an opening" comes open to enroll in it.

So, I am hoping that all the information I just gave you is accurate!

So, keep praying. God is good. I was listening to a preaching CD on the way here yesterday, and it really helped me. I can honestly say, God is helping us. I know He will continue to. Pray that whatever decisions are made, that they are the right ones. The one that God approves of, and is line with His will....

One thing that I didn't explain, was that Kara's symptoms seem to be from allergies, and she was taken out of isolation a.s.a.p. We are still at the Grizzly House for now.

Have a wonderful night.....God bless,
Megan