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30 October 2009, 10:28am EST
So we didn't get the news we were expecting on Thursday afternoon.....Dr. Furman said that the MIBG scan is showing "glow" around one of the orbits around her eye. This is where Neuroblastoma is known to present itself. Her preliminary bone marrow sample is also showing assumed Neuroblastoma cells. This is such a tough cancer...I asked Dr. Furman if what we're dealing with is relapse, and he said yes. I told him I was surprised, but we know he isn't. If the truth was known, he probably was concerned all along that we just weren't getting a sample that had tumor in it. We've been told it's all in where they stick the needle when they get a sample. He has seen kids go for months without showing cancer, and then it manifests itself in a sample. So, we are once again faced deciding what treatment to begin, or do nothing, wait a month, and rescan. If Dr.. Furman knew what was the right thing to do, there would be no discussion. One of the treatments kind of stood out to us. It's more intense i.v. chemo - 2 of the drugs she has already had before, but, it's been a while back. One drug is new to Kara. It is platin-based which can cause hearing loss. Dr. Furman said that it doesn't seem to be as hard on hearing as the other platin-based drug she had previously. It is a 3-drug combo given over 3 days, every 21 days. It is experimental....Phase 1 study.. They do not know if this will work.....as with the previous study she just came off of. I told Dr. Furman that I could return as soon as this coming Tuesday. Man, it's hard sometimes! I told Tony on the way home that it doesn't seem real, and he agreed....I wasn't grasping everything Dr. Furman was saying at the time he was discussing the possible treatments. I asked if he could email the protocols so I could read over them when I could "think." I think I "got" what he was saying, though. He printed off a couple of the Phase 1 studies. The other Phase 1 study involves a drug she just had on the last treatment. That doesn't seem to make sense. It also seems irresponsible, in a way, to stand by and do nothing for a month, knowing the nature of her disease. I also believe that if we were to do nothing, that would be an awesome time for God to get all glory in her healing. This is both a physical battle Kara is dealing with, and it is an emotional war, at times, too. Tony took a vacation day for Sunday so we could all be together at Church. God has always been so faithful to us, I know He will continue to be. He is what keeps us going. I know He knows what's going on, and can see the realm of everything when we can't. Kara and Erica know. Erica is okay with it. More than likely she will be traveling with me and Kara. We will talk to Lauren and Brent later today. Kara is such a trooper. "Okay" is her attitude. She had us laughing on the way home. Kids can adapt and take things so much better than us, at times. They can teach us a lot if we pay attention. She wants to know how long she will be in the Hospital this time. She is fine with the answer. She also knows her hair can possibly come out again. She was okay with it, until we got to talking about school. She doesn't want to go to school bald, even though she knows she can. That's hard for a little one (well, I'd imagine any age) that's among so many of their peers when this happens.. Even though it doesn't change the girl that she is inside, it makes her different. Bless her heart. She is such a blessing. She was doing sign language last night at a gas station. She was showing me how you sign, "I LOVE YOU." Then, out of nowhere tells me she's glad she has Grace in her name. I am, too. God's Grace is sufficient, and He will see us through. We desire your prayers as we face this once again. Pray for Brent and Lauren as they are "left behind". They are in wonderful hands here at home, but it doesn't make Memphis any closer.
27 October 2009, 12:53pm EST
Quick update while I have a chance...We are waiting on them to call Kara back for her "glow medicine" injection into her central line....She just had her CT scan and also her knee x-ray. The knee x-ray is just to keep track of her growth on this certain protocol..But, Kara finished her last oral chemo on Sunday before we headed out of town, (as long as the scans and bone marrow biopsy still are showing "Negative.") Yesterday, we met with Dr. Furman, and talked things over, and Kara received both her seasonal flu vaccine, and also dose #1 of the H1N1 vaccine. Dr. Furman recommended she get these, so she will need to get a 2nd shot of the H1N1 in about a month. He mentioned that we don't know if her immune system is perfectly normal yet or not. He did say she looks great, and "her labs are perfect." Even though, she is still showing low on some of her counts, they were really good counts. Her hemoglobin was 13...(Normal) and her platelets were just below normal at 146 I think, and her ANC was 1900, with her white blood cell count at 3.0.. If you remember in the past, usually when it's time for Kara to come off of chemo, or following it, her ANC count would fall to around 700, so this was a great surprise!! Tomorrow, Kara has to be sedated for the MIBG scan, and bone marrow biopsy. They almost always gather samples from both side of her hips, so I am assuming tomorrow will be no different. We will meet with Dr. Furman in clinic at 3:30 on Thursday to go over everything. We didn't mention her line removal to him on Monday. Maybe we will talk this over with him on Thursday....not sure yet. Tonight, they are having dinner and fun for the kids at the Grizzly House, where we are staying. We will probably try to make it for that this evening. So far, this has been a good trip for us. Kara has been on a candy kick...Candy on the way, candy here, and another stop last night to get more candy. Since we drove this trip, we decided to get out and enjoy the zoo yesterday. The weather was perfect for it, and we really got to see a lot of the animals. I have taken a lot of pictures on this trip. I hope to post some of these fairly soon after we get home. I told Tony, yesterday at the zoo, though, that I've got these good pictures, but then when I go home, well, I guess you can get the idea...They're mainly of Kara and us without the other half of our family.... I guess I'll just have to make up with some more pics when I get home! Please remember a boy named Jacob who is in maintenance chemo for ALL Leukemia. A friend of mine "introduced" me and his Mom. He is going to the Dr. this week. They are hoping that he hasn't relapsed. Please remember all of these kids and their families! Some are really going through tough times right now!
God bless,
Megan
24 October 2009, 10:57pm EST
We got to spend some time with my Aunt & Uncle from Indiana today....We ate supper together at Mom's house, and then they decided to take a scenic drive up English Mtn. to look out over Douglas Lake. Most of the leaves are turning orange and yellow now, with some red. They haven't peaked, but they're on their way! Brent, Lauren, & Kara all wanted to go, too. Kara ended up getting car-sick towards the end of the trip, but she is feeling good now...Right now, she and Erica just finished putting all the stuff I had for our trip into suitcases. Kara's excited that she is taking her own suitcase this time. We're packing heavier for this trip....FuN! I checked the weather for this week....It shouldn't be too bad. It looks like we might get some rain, and the temp. should be in the 60's. The twins weighed theirselves this weekend, and there is now an 11 lbs.. difference in them....We got the gap down to around 6-7 lbs. a while back.. I am hoping that once Kara's off of treatment, I will see that gap close back in! I meant to mention how Lauren's hearing screening went. She is showing mild hearing loss in her left ear only. She also has wax in both ears, which could affect how well she is hearing. (But, she is hearing fine in her right ear, with wax also! ??) The Audiologist said to have her Dr. clean her ears out, and then she can be re-screened. She is hoping (and so are we) that is what's causing the loss.....She just passed her hearing test this Summer for her K-garten screening...Hmmm....I will let you know when I know more. As of now, I haven't made the Dr. appt. to have the wax removed. That's on my list! Well, I will go for now. We still have baths to get done. Pray that this week goes by without any set-backs. I will try to get some updates in this week, from Memphis. God bless,
Megan
22 October 2009, 8:59pm EST
Today, I cancelled Kara's clinic appointment for a count check that she would've been having tomorrow...We will be wrapping things up this weekend so we can drive to Memphis, St. Jude, on Sunday....Pray that things go smoothly for Kara (and all of us!) Tony will be going with me this time. We are thankful for our family that so willingly steps up to the plate and fills in for us while we are away....THANK YOU !!!! Kara will be missing out on the Pumpkin Patch field trip. But, what a blessing if all goes as we would like, and she returns home on NO CHEMO, and without her central line, A.K..A. "her Buddy." She has had a central line since June 8, 2007... Please keep praying for all the children: Alexa Maynard, Heidi Jackson, Quincy Russell, Samuel Anderson, Sydney Dudley, Chase, Alyssa, Sydney Ives....There's many more, I know....Please keep all these children on your hearts, and lifted up in prayer! Please don't forget the families that are left behind with the heartache of being separated from their children who have went on to be with Jesus! God bless!
21 October 2009, 11:20am EST
Okay, so I talked to Kara's N. Practitioner, and she is leaving it up to me whether or not to have Kara's bloodcounts rechecked in Knoxville on Friday. She said Kara has plenty of "wiggle room" for her counts to drop, and still be okay....I told her I may just play it by ear, and wait closer to Friday to decided what I'm doing....As long as there' s no drastic change in her, I probably will cancel the appointment. If I can knock out 1 of the scheduled 3 Dr. visits this week, I'll take it! Plus, Kara can enjoy a full day of school Friday...She LOVES it! Please be in prayer for 2 children that I have on my mind right now....Quincy Russell, Melanie Gates, and Heidi Jackson .... Quincy has relapsed Neuroblastoma, and is struggling with pain. Melanie has numerous critical issues and is in ICU, and Heidi has been recently diagnosed with ALL, Leukemia. Thank You!
20 October 2009, 12:06pm EST
Kara's counts were good yesterday at clinic.....Dr. Malik listened to Kara's lungs....He said they were VERY clear.....It's so good to hear this, because she's been hanging onto a cough, and still has a runny nose....Maybe it's just allergies now. Benedryl has been helping her. Her weight was down a little, but I'm not too surprised. She was crying today because someone ate the only chicken luncheable that she picked out for her lunch...So, I "pinky- promised" her I would go get her one tomorrow while she's at school. She is excited that she gets to go back to school tomorrow...She missed all of last week, and will more than likely miss the whole last week of October, too due to scans & testing. Pray that this Friday, 23rd, again shows good counts & clear lungs so we can travel to Memphis on Sunday, 25th and gets this behind us! We have enjoyed Fall Break, even though we didn't do anything particularly exciting! It was nice just to have this break...I even got some one-on-one time with Erica & Brent Sunday...We had a really good time together....It was really needed for all 3 of us! I will update more on Friday when I find out for sure whether or not we're returning to Memphis next week. Please be praying !!! God is good - ALL the time!
16 October 2009, 11:41pm EST
Kara is all better, except a cough that we're treating with benedryl...It seems to help her. Pray that she gets over it soon & counts are good this coming week so that we can keep our schedule intact for the last week of this month...I am hoping the cough is completely gone for when she has her appt. to have clearance for sedation. She has taken 11 days of chemo so far, 10 to go.... Kara will be seen in Knoxville clinic on Monday...I will have to make that appt. 1st thing Monday a.m., and then on Friday, she will only need a complete blood count...Nothing extra - just need to make sure her counts are good to go to Memphis on the 25th. One thing that I wanted to post was that she had her hearing and vision screened at school, and there was nothing of concern...This is another area I want to praise the Lord in, because some of the chemotherapy she had during treatment was platin-based, which can cause hearing loss....This was a major concern to me, and I praise the Lord for protection in this area!!! On the other hand, Lauren received a referral for her hearing to be re-screened. I have scheduled this to be done this Wednesday......Hoping it's just something as minor as fluid in her ear. This was listed as a reason for temporary hearing loss...I don't think it's anything serious, because this summer she passed her hearing test during her K-garten physical at the Pediatrician's office just fine. Have a wonderful weekend!
14 October 2009, 6:50pm EST (2nd Update)
Well, I thought Kara was getting better, but she had some episodes with the diarrhea again this afternoon.... Today, she has eaten: cheese, peanut butter, cheese, yogurt, crackers, bread, cheese...You get the idea...Surely, something has got to work soon! I bought some bananas to try, too! Hop'in she gets over this soon! She's asked me for 2 days in a row if "tomorrow" she will be able to go to school. I thought tomorrow would be the day, but it doesn't look like it. I was looking forward to tonight's service at church. Unless Bro. Ingram thinks revival should go on, this is the last night. : ( Megan
14 October 2009, 10:05am EST
I kept Kara home because I wanted to make sure that she was over the diarrhea before sending her to school....So far, so good. She still has a cough, but still no fever, and no word that anything grew on her cultures. 48 hours have past now.... We received a copy of the new schedule for Kara's tests at the end of the month. Sun., Oct. 25th: driving to Memphis Mon., Oct 26th: 7 a.m. - 2:45 p.m. : Assessment & Triage, and lab draws
Echo/EKG
Solid Tumor Clinic Visit- go over lab work
Medicine Room Appt.... (This appt. may not be kept)
(I think this is an appt. for i.v. chemo)
Pharmacy - Pick up contrast for CT scan
Tues., Oct. 27th: 10:30 a.m. -12:30 p.m. Fasting until after CT is completed
X-Ray of Knee
CT with contrast of: Abdomen/Chest/Pelvis
Nuclear Medicine Injection "Glow Medicine"
Wed., Oct. 28th: 10:30 a.m. -4:00 p.m. Fasting until 3-4 p.m. (after sedation is finished)
Solid Tumor Clinic visit -clearance for sedation
Sedation
MIBG scan, followed by bone marrow biopsy
Recovery
** ** ** A Solid Tumor Clinic visit wasn't on the schedule for after her procedures, but usually we are just told to come on over after she wakes up. We will get the preliminary results of her tests then. Also, the appt. to have her central line removed isn't scheduled. Dr. Furman told us we could have this done the day following her tests. We will talk more about everything when we have the clinic appts. Have a great day!
13 October 2009, 8:35pm EST
I kept Kara home today. I debated, and pondered what to do. I had her up & almost ready to go, but decided against it. She was coughing so much. After benedryl & her morning meds, she was back to sleep. She slept until noon. I think it was the best for her. She woke up and diarrhea hit her. The thought crossed my mind, that maybe that's a side effect of the i.v. antibiotic she received in the early morning hours Monday in the e.r. So, we stayed home from church, too, and I am planning on getting her to bed shortly. I think the rest is very good for her. I don't want to push her system. She has dark circles under her eyes. She is getting enough fluids, but I've seen her appetite better. I have kept her on benedryl & cough medicine throughout the day today. There is no word that anything has grown on her blood cultures from late Sun p.m. We have almost hit the 48 hour mark for those. She hasn't ran another fever, either. Praise the Lord for that!!! Well, I better go....have a blessed Wednesday!
12 October 2009, 1:24pm EST
Good news....Kara's ANC was up from 700 last week, to 2000 which means we are back home!!! Praise the Lord! We were NOT looking forward to an admittance!! They were able to gather all the routine labs that she usually gets in clinic....I am hoping that this is all St. Jude needs because it will save us a trip to Knoxville clinic and she shouldn't have to miss any more school either this week. When we got to the e.r., it wasn't too busy. They did a chest x-ray, and tested her for the flu. The results for both were normal. They did give her a 24-hour dose of an antibiotic, and they also drew blood cultures to check for a bacteria in her blood. So far, no word that anything is growing...Hope it stays that way and all we are dealing with is a viral cold. Things are all set up for our arrival in Memphis on Oct. 25th, and return back home on Thursday, Oct. 28th. Tony is scheduled to have a few days off that week, and I am hoping that Kara's counts stay well enough for our travel then so he can go with us. The return date may be changed depending on what is decided about Kara's line removal....(assuming & believing everything is still fine on her scans.) She will have a full battery of tests that week. Well, I better go get something done around here! Thanks for praying for her!! God bless!
Megan
11 October 2009, 10:07pm EST
We are headed to the e.r. with Kara. Her temp is up...Please pray that she doesn't catch anything while we're there...!!!! She's had some cold symptoms, so hop'in that's all it is....But, the bad thing is if her counts are too low, they will admit her. Pray they are UP!!! They will check her bloodcounts, and possibly give her an i.v. antibiotic....
11 October 2009, 4:45pm EST
We have enjoyed the weekend with family and Saturday started our revival meeting at church. It's already been good! We ran around Saturday, and today we've taken it easy....Today's been low-key, but enjoyable! Kara's acting like she's caught a cold or something...but, no fever! I am hoping for no illnesses, no fevers, & no low counts this round.. I am ready to know how well her counts are doing, though. I really hope they're not dropping this soon in the cycle. Tomorrow, we will go to clinic in Knoxville and find out for sure what they are. I called St. Jude, and they have her testing scheduled for the last M, T, & Wed. of October. But, I'm not sure if this is "in concrete" or not. I need to call the Hospital tomorrow and find out for sure what's what. They did move her schedule around a bit on Friday because she was originally scheduled to be sedated 2 times, and none of us want that to happen. It can be worked out to have all the testing under sedation done at one time.
08 October 2009, 8:34am EST
We got an email with Kara's schedule and tests coming up at the end of October....If Kara's counts are high enough at the end of the month, Tony, Kara & I will drive to Memphis on Sunday, October 25th...Everything begins on Monday, Oct. 26th.... I have a couple questions about what's scheduled, so when I get some answers, I will post exactly what she will be having done! Have a great rest of the week! : ) Megan
06 October 2009, 12:18pm EST
WE ARE HOME! We made it home a little bit past midnight....We had a delayed flight...But, we made it to the Maryville airport in a speedy 51 minutes! I wish all of our trips were that fast....I didn't send Kara to school today....She slept in until almost 11:30 today! Kara did get her i.v. chemo to start off Rd. #6...Her ANC had dropped from in the 1300's to 700. Not too good, but she still was given clearance for chemo...I took a picture of what should be her last i.v. chemo at St. Jude...I talked to Dr. Furman, and he knows Tony & I are ready to stop Kara's treatment now. She will finish this round first. It will end in 19 days from now. At the end of this month, Kara will have another re-evaluation-mibg scan, ct scan with contrast, bone marrow biopsy & aspiration.. If everything is still fine, Kara's central line will be removed from her chest. Dr. Furman said we can do this the day after everything, to make sure the tests are okay. Kara is ready & so are we !! We are excited that the end is getting close! Please pray for protection from illnesses for Kara this month. She hasn't had her flu shot yet. She will return to Knoxville clinic on Monday, 12th for labs. I will update again, then. We have a busy week upon us. Today I'm playing catch-up around here. Tony's working at the shop & the days he has off this week he's working at his Dad's house, and with my Dad. Friday, Erica's going on a field trip, and Saturday Tony's brother & sister-in-law will be coming in, and Erica also has a youth car wash to help with. That leaves Sunday to rest !! Whew!
Let me clarify something....When I mentioned Kara's subjected to radiation, sedation & lower back biopsies every time she's evaluated, I didn't mean radiation - as in part of her treatment plan. She is past that....I meant that each time she has a scan, radiation is given off in both the MIBG scan, and also the CT scan. So, as long as she is on this treatment, these tests are needed..Approximately every 6 weeks. But, good news is this is probably the last round of chemo, and then she will be re-evaluated 3 months after treatment ends. The entry for Christian NesSmith updates that I was talking about begins on Sept. 23rd, or Sept. 29th.....And, HAPPY BIRTHDAY DAD !!!! WE LOVE YOU !!!! Have a blessed week! Megan
02 October 2009, 10:20pm EST
Well, round #5 of chemo ended Wednesday! Kara went to clinic today, and they said she has grown a little from last week....She is still holding her weight in the 38-40 lbs. range. Her bloodcounts are good. Her ANC dropped from last Thursday, though. It was over 2000, and now it's down to about 1360. This is good enough that she has the all clear to travel to Memphis for chemo. She & I will fly out of town Sunday ...early evening. Monday morning Kara has labs, and a clinic visit to be cleared for chemo that should follow as long as her counts permit and she is still doing well....Her feet have done really well this round. Her labs have really been a blessing to see, too. It's strange at times, because it seems I can assume something's going to happen, and it doesn't always happen the way I thought it would.....I thought for sure we would've had to stop her chemo because of bad side effects, but it DIDN'T happen that way! Please help us pray about God's will for Kara. If she stays on track, she's due for another re-evaluation at the end of October.....Yes, it is already almost time again! Everytime she undergoes these tests, she is subjected to more radiation, sedation, and biopsies of her lower back. This is all part of the guidelines for this research protocol....about every 6 wks. these are scheduled. Last time this was done, Kara's scans were clear, and we were given the option to stop or continue treatment at a lower dose. Please pray God's will is done when we return for these tests, and that if we are given an option, we make the right decision......Thank you! We should return Monday night in time to get ready for bed and get a start for Tuesday! Next week will be starting off as a busy one around here it looks like! God bless & have a wonderful weekend....hold your little ones tighter and appreciate them! They ARE a gift to us!!! Pray for the NesSmith family....http://www.caringbridge.org/visit/christiannessmith. Christian has entered into the gates of Heaven. Christian had Neuroblastoma, and a few entries back, her Mom entered a journal that I would like you to read....She shared what Christian was experiencing....It wasn't pain....You will have to read her mother's own words....It moved me.....What a special girl that God called home.... Megan Lee
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