26 September 2009, 10:59am EST
Hello again....Kara's bloodcounts in clinic yesterday were really good for her....Her chemistries were looking pretty good, 2.....Her ANC was over 2000! Wow! 2 weeks in a row with good counts...I am enjoying this. Praise the Lord for helping her in this area that I really needed Him to work out! There has been a change in plans for next week's trip. Because Kara's cough is still hanging on, we will not be going to Memphis any sooner than Mon., Oct. 5th...We will go to clinic at the end of next week to make sure her bloodcounts are still good before we head out the following week. This next trip will be very short.. Kara & I will fly out together and it will more than likely be just an overnight trip.

We made it to the field trip today...We were at a stop sign waiting for the bus to go past us, so we could follow behind, and Kara spotted our car. Her eyes got larger, and she started smiling...They enjoyed the bus ride - (first time for them!) Kara's favorite part of the farm trip was feeding the chickens. Lauren ended up milking a cow...I think they enjoyed their day at the farm today.... School is out in our county on Monday and Tuesday due to illness. I think thekids are glad! I can tell Erica's wishing she had a couple of extra days off from school, too! : -) Well, take care & have a blessed weekend!

23 September 2009, 10:19am EST
Kara is doing good....School is so much fun for the girls....They are both looking forward to their farm field trip this Friday...I don't know how many times Lauren mentioned it yesterday...She is on a countdown!!! I will be taking Kara to the clinic in Knoxville tomorrow for bloodcounts instead of today....I am hoping that with the new reduced dosagethat it is allowing for WONDERFUL bloodcounts...That always makes us happy !!!! St. Jude has scheduled our next trip for Oct. 1st. This trip will just be for bloodwork, and clearance in clinic for her i.v. chemo....then back home again. As usual, the trip will depend on if her counts are high enough...So, we'll wait and see...

Brent is SO much better than Saturday when he went to the clinic....He hasn't ran a fever since close to midnight on Monday. He is acting like his self, but when he moves around some, he starts to cough...But, overall he is doing REALLY good...We are hoping that the flu stays contained!

September is National Childhood Cancer Awareness Month..Please remember ALL the innocent children fighting this disease! Here are a just a few families that need our prayers. The children are: Quincy Russell, Christian NesSmith, and Caycen Tackett, and Alyssa Babineaux ...

God bless!

19 September 2009, 9:48pm EST
Okay....to add to our household drama....Brent has tested positive for "Flu A." The Dr. told Tony that, "Yes, he is saying Brent has the swine flu....This is what they are seeing." He said our state has stopped testing for the swine flu. So, my parents are keeping Brent at their house, and he cannot go anywhere (store, etc.) for 1 day after he has stopped running a fever....St. Jude is treating Kara with Tamaflu (Tony's running to get it now...Thankfully we have a 24-hr. Walgreens near us!) on a dosage as if she actually has the flu...not just a preventative dose. He didn't want to take a chance with her since she has had symptoms ....(whether it's just a cold or what, she is better, and he also said it's not exactly 100% sensitive with the swab test......), but she still has a cough.....He said to take heart, most kids that they see that have had this are doing fine, and even in healthy kids it is no more severe than the normal flu......But, any difficulty breathing, breathing fast, or using extra muscles to breath, I need to call him back. He said for home treatment....wash hands before you eat, wash hands, wash hands, wash hands! So, pray for Brent & our family & also Daniel Murney who also has the swine flu!

19 September 2009, 5:58pm EST
I guess it's about time I updated!!! Kara has caught Lauren's cold....she started running a low-grade temp. Wednesday night. Thankfully, her ANC was over 2000 (Surprise..Surprise that they would be that high.) Dr. Malik didn't think that her counts would drop to the dangerously low level from earlier in the day when they checked them in clinic to when I called him about her fever that night...Since the only new symptom she had when I called was the fever, and she was acting okay, he didn't order us to make a trip to the E.R.... (Whew!) Her and Lauren's cold symptoms are still hanging on....but there hasn't been anymore fevers!

I called St. Jude the next day to give them her counts, and tell them what went on so they could document it if they needed to. Kara's N. Pract. called me back to tell me that for their St. Jude patients with respiratory virus symptoms they are doing a viral culture on them, and with the flu going around if there's suspicsion they are putting them on Tamaflu.....It worked out that I could have this done for Kara in clinic yesterday. I already had an appt. for Lauren & Kara to have their vaccine boosters anyway...I really doubt it's the flu. Lauren was in the clinic earlier in the week, and her test was negative for flu & strep...Just a bad cold...... Last night Kara did have me a little worried though...She just wasn't herself...very tired...had "chills", but no fever....She is acting like she feels a lot better today....Maybe she was just ran down with this cold, and with the added benedryl, I'm sure she was worn out!

Tony, Erica, & Brent went to Tony's "company picnic" today. I stayed here with the girls. They've been busy playing.....drawing with sidewalk chalk, playing with toys, and going back and forth between Mom's house and ours.....Handy sometimes!! :- ) Just another Saturday....always something that needs to get done around here.....So, I'm off to finish with my "chores."....Have a great Sunday......I'll be taking Kara back to clinic on Wednesday this week....The girls are really looking forward to their first field trip (and bus ride...kara seems pretty excited about that!) to a farm...It fell on a day where Tony's not scheduled to work at the shop...I'm hoping he still decides to come along with us! Well, I will run for now!

14 September 2009, 8:37pm EST
Proverbs 25:25 - As cold waters to a thirsty soul, so is good news from a far country.

I talked to Kara's N. Practitioner and the final pathologist report on Kara's bone marrow sample is NEGATIVE !!! Praise the Lord for good news ...

I'd like you to remember the Higgins family in your prayers. Their son, Carson was also diagnosed with Stage IV Neuroblastoma around the time of Kara. They were the first family we met at St. Jude, and recent tests have raised questions about his status as being 'No Evidence of Disease'. He has recently traveled to PA, and also NY, and is currently at St.. Jude. They are wanting direction for their next step for Carson....That is a hard place to be in....Please remember their family, and also Carson in your prayers... http://www.caringbridge.org/visit/carsonhiggins.

Also, Lauren has ran a fever last night, and her temp. is raising again tonight. She acts like she has cold symptoms, so please pray that she gets better soon, and also that this isn't passed on to Kara. Kara's bloodcounts weren't the highest when we started her chemo.....Please pray that Kara's protected from these illnesses going around! THank you and have a great night! (She is still taking the chemo & we'll go Wed. to Knoxville for bloodcounts.)

12 September 2009, 11:37am EST
Okay.....so we were given 2 options......completely stop all of her treatment, or try the lowest dose level of Sorafenib (the drug that causes all of the redness & pain in her feet, and blisters.)...... He re-assured me that if we stop now, it IS okay. This is considered a phase 1 study....meaning it's investigational, and they're still gathering information about this treatment. Phase 1 also means they are trying to find the correct dosage to give children on this treatment.... I was given some time to discuss things with Tony, and when Dr. Furman returned to the room, I told him we decided to go ahead with the lower dose of chemo. Even though Dr. Furman has picked up on the sense that we are ready for this to end, we decided to choose this route. We are going to 'the end' with this treatment. She still is required to have weekly Dr. visits in Knoxville. But, if her side effects get to the point that they have been with her feet, the treatment will be stopped. That will be IT....(as long scans and bone marrow biopsy are still fine!) Kara will have to go through what we just did this past week when she has been off treatment for about 1-2 weeks. (The protocol calls for an evaluation after the treatment is finished.) Kara received her i.v. chemo on Thursday evening.....and she is now on day #3 of a 21 day cycle of the oral chemo. This is round #5, and it's pretty much back-to-back with her last round. This morning, she mentioned about her feet hurting already. You have to know Kara.......She adapts/tolerates things fairly well. If something is bothering her, she will tell you, but she's typically not a whiner. Even with her feet hurting last round, she would just adapt and walk on her heels. She was getting to the point where she would let you pack her at times, too. So, we will see how far we get with this round....

Dr. Furman thought she looked great....He said she's a fighter.....We don't know the culprit for causing the swelling of her eyes. He wondered if I switched detergent or something...The culture came back negative for infection.....It was strange. Leave it to Kara! When we were discussing everything, he said knowing Kara, she might invent her own strange side effect....That's just how sensitive she is to stuff..... He doesn't want her to have the flu shot while she's on therapy....If her counts would be trending downward while she got it, and she would spike a fever from the vaccine, she could possibly end up in the Hospital....(automatic admission if counts are below 500, and they get a fever-no matter what you suspect the reason is.....) He said we could take a 2-3 day break to allow for the vaccine, but for right now we are waiting.

Please keep praying for her protection from illnesses.....I thank God that he has helped her so much through all of this. God has been right with us and never left us...even when we didn't understand why something happened, or something didn't happen the way we thought it should. I can be assured knowing that He always knew and still knows what's best. I can't see the "big picture" like He can......But, sometimes it's hard to trust when you're going through it, and things 'go against the grain.' We can finally see a light at the end of the tunnel now. I praise Him for all that He is, and all He has done for Kara Grace......God's grace is sufficient for all we face...Never doubt it!!! ..... Have a blessed weekend....

Oh, and THANK YOU for your prayers that you've said for us this week !!!

Megan

10 September 2009, 8:09pm EST
Hi, Megan asked me to update. The MIBG scan, and CT scan didn't show any evidence of disease!!! The preliminary results of the bone marrow biopsy didn't show any disease either!!! She'll call St. Jude Monday to get the final results. There is a change in treatment and she'll explain and bring everyone up to date when she gets home. They're suppose to fly back tomorrow, Friday. Thank God for his healing power and thank you all for your continued prayers!!! We feel very blessed right now!

God Bless,
Mary

10 September 2009, 11:41am EST
When we arrived Tuesday p.m., we were forwarded to the Ronald McDonald House...all rooms at the Grizzly were full....Kara likes it so much at the RMH. Last night, it happened to be the monthly birthday party night. We had Papa John's and ate some b-day cake...We recognized about 3 families that are still here from the last time (May/June). Please keep all of these families in your prayers...I know they are longing for the day when things are more like normal again. One family caught my eye yesterday while we were sitting in the clinic waiting area. Please lift them up in prayer. The daughter was sitting in her wheel chair, with a seeing eye dog nearby. I noticed a cloth covering her neck area. Her eyes were set in a stare a lot of the time. She looked like a porcelain doll. She may have been in her teens. She was using sign language to communicate with her father. The mother was also close by. At one point, she wrote on a dry erase board to communicate to the father without the child knowing what was said. Please pray for this family. The child cannot speak, cannot see, and she wasn't walking. She obviously can hear, but what a prison she must be in ....especially if she hasn't always had these limitations. Pray that she can feel God's love and security, and experience joy through Him. September is Childhood Cancer Awareness Month....remember all of these children!

Kara is currently sedated, while they are taking pictures of her whole body. This is the MIBG scan that uses "glow" medicine that uptakes Neuroblastoma. She will have a double bone marrow biopsy and aspiration from her lower back following the scan. She had her favorite Anestesiologist, Dr. Bikhazi sedate her this morning. He is wonderful! We have come to appreciate him as well! He always calls her Sara Lee, Kara Lee when he sees her.

Later today, we will meet with Dr. Furman and hopefully know something. I would think we should know the MIBG scan results, if not more. Pray that GOD'S will is done today!!! We love you all and appreciate all the prayers that are still going up. Prayer DOES work and God is a faithful Father! God bless! I will probably still have Mom update later if we know something.

Megan

08 September 2009, 2:55pm EST
Kara's ANC is only 912, down from 1682 last Wednesday. : ( They checked the protocol, and ANC needs to be 1000 for chemo, which is scheduled for Thursday evening, counts permitting. Pray God's will be done. I don't like the fact that even with the cyclo chemo dose cut in half, her counts are still dropping to where they are. Not sure how low they will be going before they come back up or chemo begins again! I'm hoping this is all working for our good somehow! Well, I have to go we should've already been on the road heading to the airport by now. God is good....keep Kara in your prayers ... this is the week of her scans, bone marrow biopsy. We will return Friday if things stay on schedule...
Take care & God bless... Oh, I will ask Mom to update with results. We should know Thursday evening the jist of things.

Megan

06 September 2009, 1:56pm EST
Well....we have had a lot of back and forth conversations with a couple of N. Practioner's at St Jude that usually see Kara in clinic. They have been conversing with Dr. Furman and here is where we stand:

They checked the protocol about the medicine Sorafenib that causes her feet issues. Since she has had 3 occurences, the protocol says we need to stop giving this drug to her. This is on hold at this time....She hasn't been on it since the pain in her feet was bothering her, but we are not to re-start this medicine even though her feet are really healing up now. (She was seen at the Pediatrician's office this morning and he thinks her toes look good....the redness now is from inflammation and new skin.)

As of yesterday, Dr. Furman felt like we have no choice but to stop the Cyclophosamide, also. You know I mentioned Wed. p.m. the opposite eye was swelling, too. Well, she was fine in the night. Thursday a.m., she woke up and both eyes were swollen underneath them. I gave her benedryl, and sent her to school....(She was acting fine other than having swelling.) By 2 p.m. she looked better.....Then, it happened again Thurs. p.m. around 8....I gave her more benedryl and Friday morning she woke up, with both eyes swollen. She didn't look improved. So, I kept her home in case I needed her seen by a Dr. again. Well, I didn't get to talk to St. Jude until around 3:30 or 4 p.m. yesterday, and by then, her eyes really looked good. I explained that what she has experienced with the swelling issues, seems to happen in cycles. Every morning, and about 8 p.m. at night it would happen. The benedryl helps, too. The only medicine I have changed is her daily multiple vitamin. I switched from a DMV without iron, to one that has immune support. Well, I was told that sometimes the ones with immune support have extra additives....but, even after I switched back to the 1st vitamin she was used to ....she still had swelling issues......So, after all was considered.....I was ordered to stop the cyclo for now, and get her eyes checked to rule out an eye infection....and we will see what the cultures show (if anything)....She will have bloodwork again on Tuesday morning in Knoxville to see if her bloodcounts are good enough to travel to Memphis later that day. Everything is scheduled to begin on Wednesday....We should return home on Friday, 11th. The Pharmacist at St. Jude hasn't seen this happen with Cyclo, but I was told, "But, we are dealing with Miss Kara!".....I've mentioned it before....she is a sensitive one!

The Pediatrician this morning said we could go ahead and start her on an antibiotic in case she did have an eye infection, but it's important we know with Kara. So, we will give it some time before we start an antibiotic. She was on more than one medicine, too. One whole eye became bloodshot this morning. So, he said if it stays bloodshot all day today, and tomorrow it is also, then we need to start antibiotic drops. But, we are holding off starting them until we see what it's going to do....(It's already looking better.) I gathered from talking to him that if it were an infection it wouldn't come and go like her's has been.....That would be more true of an allergy. So, we will watch, wait, and see if we need to take action...or do nothing! In the meantime, she is staying on benedryl. I will update probably Mon. or Tues. before we head out to St. Jude....Keep praying that God's will be done this upcoming week....Thanks and have a wonderful Labor Day holiday!

Megan

02 September 2009, 10:01pm EST
We made it to clinic today.....Kara's ANC is pretty good. It is a little under 1700....It, and all of her main bloodcounts have dropped from last week. She is considered anemic now. Her platelets are still within normal range, but her white blood cells are still on the low-side. Her weight and blood pressure are good. We also found out that her 24-hour urine specimen from this weekend came back low. It was checking the protein in her urine. A lot of her urinalysis' in the past have been showing traces of protein in them. So, this is good news in that area. It's the opposite of what has been happening! I held off on calling St. Jude about re-starting the chemo, Sorafenib. All of the painful, red lesions, and the one blister on her heel pretty much are resolved now. But, one of her big toes has had a couple bleeding episodes, and it looked infected. So, I had Dr. Malik look at it today. He thinks it's a secondary infection after the redness are soreness started (from the chemo) on her toe. We are starting warm water soaks 2 x's/day, and just scrubbing it with soap and water. I have also been using Neosporin on it. It reminded him at first of an ingrown toenail.....I didn't talk to St. Jude today about any of this. It was later than usual when we got home today. I will call them tomorrow. One strange thing did happen in clinic today. Kara had a bump come up underneath her right eye. It looked like a mosquito bite. Well, within minutes it got larger. So, I asked for the Dr. to look at her. He did, and he was asking me questions...what meds is she on, etc. Well, he wanted us to stay a bit to keep a watch on it. It did get pretty large, and seemed to be like a fluid filled blister, only under one eye. After time, it got better, so he released us. His opinion was it was an allergic reaction because it happened so fast. We're not sure what triggered it. Well, go figure, this evening about bedtime under the opposite eye, it started to swell. So, I gave her benedryl. But, being bedtime, I'm going to check in on her 2-nite. Swelling of the face at bedtime isn't too reassuring. She is SO sensitive. She is not typical - for sure.

Kara is loving school !!! Well, so is Lauren! Usually before we make it home, Lauren is handing me her papers that she's worked on. They talk a lot about the new kids that are in their classrooms. I know one thing that really sticks with them is the songs they are learning...Kara was singing about hot dogs frying in a pan yesterday.....Lauren came home the other day singing about monkeys. They really enjoy it so much....

The nurse in clinic said at the end of this month, they will have the flu vaccine ready to dispense. I plan on having the whole family get this again this year. I am hoping that this flu season isn't bad. I know there's been a couple of cases of H1N1 hit in our own little community. Kara's Oncologist said that the best thing I can do for Kara...is handwashing..... Keep praying for God's protection over Kara during the days ahead. I don't want to see her sick! Well, I better go for now. Remember Kara and me next week as we travel to ST. Jude for scans, bone marrow biopsy, etc., and possibly more chemo. I will keep you updated as things go along. Thanks!