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31 Jan 2009, 10:40am EST
Praise the Lord for all He's done! I wanted to update yesterday, but wanted to wait until I found out the results from the Pathologist about the 'rare suspicious clump'.....When I talked to Kara's N. Practitioner yesterday afternoon, they didn't have the official report from pathology yet, as to how many cells were in the sample. The way Dr. Furman talked to us on Thursday, we gathered that regardless of whether pathology had any doubts about the clump, or no doubts about it, this is the plan: more oral chemo,(Temazolomide and Irinotecan.) This time it's 2 different drugs she's never had before, and we will continue this until April, when all of Kara's tests will be done again. At first, we were told that these med's shouldn't cause her to lose her hair or affect her blood counts. Then, when we had to read over and sign the paperwork, and read all the possible side effects, we were told this could affect her blood counts. You know how that goes, they have to list every known side effect, but most of them aren't common. The main side effect with this treatment is diarrhea. The trick is to get it to stop as soon as it starts, by using Immodium. Because we don't know how these meds are personally going to affect Kara, for the 1st month of treatment, she will be seen at Children's to have labs once a week. I am hoping SO MUCH that these will not lower her blood counts (risk of infection is higher when this happens.) Dr. Furman told us that this treatment shouldn't cause her to be hospitalized. Today, we are expecting a new antibiotic to come in the mail so we can start it immediately. From now on, until April, she will continuously be on it. This is just part of the treatment plan. She will have more pills and medicines to take it sounds like, but she is a trooper. I have talked to her a little about it, and she has accepted it. She said, "What if I DON'T get diarrhea?" I said, well, then you won't need the medicine to stop it! : ) We are not discouraged about the 'rare suspicious clump' . Yes, we would've been happy to know that her treatment was almost over, but, we know that day is coming, and don't believe it's too far ahead of us! We know God has touched her body, and just the fact that her MIBG scan was NORMAL was amazing! Her CT scan was considered stable, and they didn't see anything but scar tissue. Kara's little body was filled with SO much cancer when she was diagnosed in June 2007. I know it's been by God's touch that she is has shown such an improvement just since coming home in July 2008. (If you want, you can go back to the beginning of July 2008's journal for those of you that have recently found Kara's page.) July 8, 2008 God touched Kara, and since that point on, is when we have really seen the improvement in her test results that we've longed to see! God is so good.... It has been busy since we've been home, and last night, Brent started chilling, and running a fever...Mom is keeping him, and having him seen at the Pediatrician this morning. So, keep the prayers going up that Kara doesn't catch a lot of germs and illnesses while she's at home and on treatment. We still have to keep the usual plan, if she gets a fever, we have to call, and probably more than likely will have to go to Children's for blood cultures, and an evaluation. Well, the Pediatrician thinks Brent never fully got over his strep-throat since it hasn't even been 1 week since he finished the antibiotic, and he is still testing positive for it. They gave him a penicillian shot that really hurt - 10 days worth of medicine in 1 shot - ouch! The antibiotic Kara started today is Suprax, which will definitely cover strep throat, so the On-call Doc at SJ thought even if Kara caught strep yesterday while they were together, she would definitely be covered.....BUT, his concern was that he thought Brent may have a virus. (Some people are carriers of the strep bug and can test positive all the time, and not actually have strep throat is what he told me.) So, the plan is that Brent will stay with Mom until he gets to feeling better. He has had a runny nose & headache, along with the sore throat, too. They were headed to get a slush and some trading cards. I know that will help him to feel better! : ) Rhonda, tell Lexi I am so proud of her! I know you are so happy! : )
Sondra, I heard the meeting was really good ~ and I'm glad you guys were able to be there for it ~ I heard it was encouraging! : ) I hope you all know how much we appreciate your encouraging words and prayers...Thank you all for your love and support...WE LOVE YOU! Megan
29 Jan 2009, 6:09pm EST
I hope you are all sitting down!!!!!!!!!!! Megan just called and Kara's scans were all NORMAL, YES! YES! YES! They can leave to come home as soon as they get a urine sample from Kara. Woo Hoo!! Now the bone morrow biopsy............the pathologist has not looked at it yet, but Dr Furman said there is a "rare suspicious lump" in it. It may be tomorrow before we get the complete results. He remembers that it was there before, so he has decided to continue oral chemo. She will be taking 2 different drugs that they use together. She hasn't had either of these before. She won't loose her hair again, and this doesn't make her blood counts drop either. She'll take them twice a day for 2weeks, and then be off of them for 2 weeks. She'll repeat this cycle until April. He wants to see her back at St Jude then and repeat the scans and biopsy. Megan said she isn't really to concerned about the lump. We are all excited about the clear scans. In June they could see tumor below her knee, right shoulder, and her thigh. The next scans in Aug showed improvement. And now Clear!! This is awesome! We are rejoicing here to say the least. I just got a call from one of Mike's wood customers. She has leukemia and has had it since 1994. Her counts have been stable until here lately. They are starting to go up. She asked that we pray for her, that they'll go back down again. She just recently lost her husband also. Her first name is Shirley. And please remember to pray for our neighbor Margaret and all the many children who are fighting this cancer and needing healing. Join us in thanking God for moving on Kara's body. We love you all. God Bless,
Mamaw Mary
28 Jan 2009, 12:58pm EST
Megan just called and they got settled in around 10:30 pm last night. They woke up to snow this morning and then headed over to St Jude's for their morning appts. Kara's blood work was very good. ANC 2500
Hemoglobin 11.3 (12 is normal, but this is ok)
Platelet's 200
Yeah Kara!!!!!!! Right now they're in the cafeteria eating breakfast and lunch. NO, not brunch.....Tony ate breakfast and then went back through the lines and is now eating lunch.............can you imagine!!! Poor guy. God bless him anyway. There has been a change in scan schedules. The N. Practitioner didn't want Kara to be sedated 2 times, so today the only thing left to do is injecting the nuclear medicine. They are going to do the bone morrow biopsy and MIBG scan both tomorrow, since she'll need to be sedated for both of these. They'll be done back-to-back and only one sedation will be needed this way. The nurse said they may be able to come home right after this tomorrow. They are working on the time schedule now and they may not need to stay another day if there won't be any more appts. They'll probably get a phone call from St Jude telling them of the results and what the next phase of treatment will be. The biopsy has to be looked at by a pathologist, so the results from this won't be known right away, but the MIBG scan results are quicker. Hopefully we'll know something tomorrow, it's difficult for us waiting on the results, but we are really expecting wonderful news this time. God Bless you all, and thank you for checking in on Kara and family. We love you and appreciate all the support and prayers. Mamaw Mary
26 Jan 2008, 10:31pm EST
Tuesday morning will start early for us all....Kara has an appt. to get her crown fixed first thing in the morning. I also have to start her on her potassium iodine drops 1 drop/3 x's a day for 3 days to protect her thyroid during her MIBG scan, which will happen Thursday. Wednesday is her bone marrow biopsy. Both Wednesday and Thursday Kara will be sedated. Kara is such a sweetheart right before she goes to sleep. She'll say, "I love you, Mommy." " Good-night Mommy." One of our favorites at St. Jude is Dr. Bikahzi, the Anestesiologist. He usually will call her, " Kara Lee, Sara Lee." Sometimes he'll say, "Kara Lee likes ketamine."(sounds like ket- a- mean) That is the med they give her along with her "sleepy medicine" that helps her to wake up without any anger. Don't ask me how it works, but he suggested using it, and we have been using it ever since. The first time she ever woke up after being sedated she was throwing pillows, and just not happy at all. I thought it was because she had fasted, and wanted to eat, but had to wait. But it must have just been the medicine. Odd how some medicines can effect people certain ways. I am suspecting Friday we will meet with Dr. Furman or Kara's N. Practitioner to go over the results and find out what we are doing next. I hope so much that Kara doesn't have to go on Topotecan....But, I realize that may just be what is on the agenda. I guess I got used to having what 'seemed like' a semi-break from chemo. Even though she was on oral chemo, it didn't lower her counts and require hospital stays like most of her previous chemo. The Topo can lower the childrens bloodcounts to transfusion levels. So, please be praying for us this week. Pray for protection over Kara's body, safe travels, and God's will for what is next, and also for our family here at home. We do appreciate you guys. I will probably ask Mom to update for me while we are away. I hope you all have a wonderful week. God bless,
Megan
24 Jan 2009, 3:44pm EST
Hello! Yesterday, I took Lauren, Brent, & Erica with me to the grocery store, and they got to spend some of their moo-lah...I told them on the way home that we don't do that very often. I was glad that we went together. We even sampled some new sausage they were promoting....We all liked it so good, we bought a box, and had "breakfast" for supper last night. Erica was going to take Kara some leftovers, but Lauren ended up sneezing over the plate, so that idea went down the drain! Kara didn't get to go with us because I wanted to keep her separated from Lauren since Lauren got up complaining of a sore throat and a headache yesterday morning. Kara got some 1- on- 1 attention with Mamaw Mary & Papaw Mike, and Mom told me she ate so good - she even ate a whole bag of popcorn, plus some more last night at bedtime....She had fun sleeping overnight at their house. She slept in this a.m. (slept about 10-11 hours), and now that Lauren's been on an antibiotic for 24 hrs., they are back together again and playing Polly Pockets ..... All is well right now.... Please pray nothing hinders our trip this week, and that everything goes smooth. Still be praying for Heather...She is home, and is doing better, but is having to give herself shots everyday, and is still weak at times. Please keep praying for our neighbor, Margaret. Thank you! God bless,
Megan
23 Jan 2009, 1:58pm EST
Today, things are back to the usual routine. Erica & Brent did have school today, and I heard that it could reach around 60* today...Wow! Sounds like flu weather, huh? I've been trying to catch up on cleaning the house, but I find myself taking frequent breaks from it. (That's what I'm doing right now) .... anything but dusting! The girls are playing good together with their toys right now....It wasn't long ago, and they were both on the couch. Lauren and Kara had a conflict with each other, but they seem to have gotten over things, and now all is well again.... I keep thinking ahead to what changes could possibly happen (due to a possible chemo change in Kara's treatment plan) in the near future. KEEP IN MIND, WE DON'T KNOW FOR SURE WHAT IS DEFINITELY GOING TO BE PLANNED NEXT, IF ANYTHING, AS FAR AS TREATMENT GOES. We just have an idea, and it is even somewhat possible (depending on test results and what is ultimately decided) that Kara's treatment may have ended with round #7 of Accutane. Tony told me he doesn't worry about something that he doesn't even know will happen....and advised me to take it a day at a time...Advice I should follow right now....I just keep thinking about how things will possibly change if Kara goes on a different chemo...I should encourage myself with the thought that Kara may have already reached the end of her treatment...None of this we will know for sure, until Dr. Furman lets us know next week after he knows the results of her testing. God has proven Himself over and over again that He is taking care of us....He is so faithful...When I would testify at church (before we even knew Kara had cancer) it seems like about everytime I would say something it would include how faithful God is. Boy, has He ever proven Himself faithful to us time after time through this....And, why should I worry about tomorrow, God is in control, and since He IS faithful, I should just completely give Him my concerns, along with my trust...He does all things right. Even if we have to wait a little longer on clear scans, I will trust there is a reason. I do believe with all my heart God touched Kara's body and declared healing. And, though God didn't cause this disease to inhabit Kara, it didn't happen without Him knowing about it first. This isn't said with blame and arrogance....I don't want to be misunderstood on that quote.... I am NOT blaming God...This is not His fault. What I mean, is that He knew all about it before it ever happened to her, and He had it all figured out before we even knew there was going to be a problem.... He is God! I will trust and continue to believe that He is working this to our good, and I realize I may never know all the purposes that are being fufilled through this. One of my favorite verses is Romans 8:28.. "And we know that all things work together for good to them that love God, to them who are the called according to his purpose." In all circumstances I can trust that God is on my side, loves me, and will see me through... I was telling Tony just this week, that what the Devil meant for evil, God meant for our good, and that He has done nothing but bless us...I will continue to praise Him for who He is and what He's done, and for every ounce of grace He provides that sustains and carries us. Please pray for Kara and everything coming up next week.....We love you guys, Megan Please pray for our neighbor, Margaret....My Dad told me last night that she is in ICU with an infection....I haven't spoken to her since before what was to be her last chemo treatment scheduled for the beginning of December.....Please pray that God touches her body so she can come home!
22 Jan 2009, 10:54am EST
Kara is doing good - seems to be over the virus now .... Her appetite has been better, too. Erica & Brent are enjoying the days off from school this week .... they haven't been all week! I never would've thought the snow and cold weather that came Monday, would affect school closing for most of the week. The kids are enjoying the time off.... Yesterday, Brent went with my Dad and Tony while they worked. Tony told us last night that Brent said he didn't know who in the world would want a job like that, then went on to say he was hungry... (My Dad takes down and trims trees).... I guess it was more fun than hanging around us girls, 'cause he's back with them today ..... Last night the girls played with some of their baby clothes that I had tucked away in the closet. They were putting them on their baby dolls, and a stuffed penguin. Then, Kara tried putting on one of Brent's infant gowns. She got it on, but it looked like a shirt with 3/4 length sleeves with an elastic gathered hemmed waist on her. I should've taken a picture! We're still trucking along here....counting down the days....5 days until we head out again....Keep praying that everything goes smooth! Thanks,
Megan
19 Jan 2009, 5:20pm EST
Good news about Heather ..... Her heart went back in rythym today and they didn't need to use the diffibulator. Praise the Lord! Thanks for praying for her ..... The kids are eating a bowl of snowcream right now .... yum! yum! And the snow is sticking! :)
19 Jan 2009, 4:39pm EST
Boy, is it snowing out !!! We are enjoying it, and I know the kids will enjoy it even more if it gives them another day out of school tomorrow! They're relaxing at home, today. Tony is getting ready to set a mixing bowl out so we can catch snow, to make 'snowcream'. This is something Tony enjoys making every year that we get snow! Kara & I had an early day today, and we've got GOOD news at clinic! Kara's chemistries all looked good, and Erica's strep test came back negative, so she doesn't have to finish the antibiotic. We have a new date for Kara's tooth to get fixed .....Tuesday, 1/27th which is also the day Tony & I are scheduled to have a cleaning at the Dentist, and also the day we head out for St. Jude....Oh well, I will be glad to get these appts. behind us...I'm wondering how close we were to getting a bad reputation with the Dentists as much as I have rescheduled all of our appointments! I'm sure they understand, though....Sometimes you just have to take it a day at a time around here! :) That, we are learning to do !!! I'm the type who likes to plan ahead and be prepared, and sometimes you just have to deal with things as they happen, do what you can do, and make the best of the situation. We have leaned a lot on family over the last year and a half to help out when things come up suddenly....We are blessed to have people in our lives who care and are willing to help like they have.....We appreciate you all! On a lighter note, yesterday, Kara was sitting on Tony's lap, and he had his hand on her head, and made the comment that her hair was as soft as Charmin.....I really don't think she understood what he meant until Tony told her what Charmin was...then she started grinning....Erica thought it was funny right away, though.... Well, I will run......Keep remembering Heather, Charity, and the Durham/Howard families....and there's so many more, too.... Have a great day & God bless,
Megan
18 Jan 2009, 12:06pmEST
Hello all ~ Kara is doing okay....You can still hear the congestion when she coughs, but she is getting over this....Yesterday, she had a really good nap, and I'm sure that only helped her! Brent came home Saturday a.m., he started running a fever Friday night, so we kept it safe and had him stay another night at my Parents' house. He cried a little when we were talking to him on the phone about why he had to stay another night, but Mom said he was fine after that. They played a game and made cookies together.... Saturday a.m., Dad came over to watch the kids while I took Erica to the Pediatrician over her sore throat. The rapid strep test came back Negative. I will call Monday on the 24 hour culture to get the final results. I explained Kara's situation to the Dr., and asked if it would hurt to start Erica on an antibiotic, too. That way, she is already on it, in case Monday's test would happen to be Positive. She was fine with prescribing medicine for Erica, too. To play it safe, she spent the night at Mamaw & Papaw Lee's house. I know she had fun with them, too. They had a fun day out of the house yesterday, as it was Mamaw's Birthday....We are trying to play it safe around here with Kara and trying to take precautions with her.. We don't want to jepordize this trip to Memphis for her scans at the end of the month. I realize it probably sounds like I am a broken record here lately, and most of what you hear is about some sort of bug, or a fever with another E.R. trip....One of these days I'm going to have more encouraging updates! I am looking forward to being able to give you good news in a couple weeks about Kara's scans and biopsy.... Tomorrow, I am taking Kara to Knoxville to have her chemistries re-checked. She has been eating food that contains sodium, so hopefully we will see that raise in her sodium level that we need to see. I have a new prayer request...a close friend of mine is in the Hospital. Her heart has been out of rythym since Wednesday. So far, the medicine she is taking is not working to put it back in rythym. They are testing her for blood clots, and if she doesn't have any, and the medicine still isn't showing the effects they want, she is supposed to be sedated to have her heart shocked. This may happen Monday, also. Please be praying for Heather.....We appreciate you guys! Our Uncle who lives in Indiana also has to deal with his heart being out of rythym. Please remember everyone out there who is battling illnesses...God is more than able to heal!
Megan
16 Jan 2009, 11:31am EST
Kara's strep test is negative, which is great.....I feel a little nervous, maybe that's not the best word for it, but a little concerned I guess about the next couple of weeks. I asked how long it takes for you to come down with symptoms of strep if you've been exposed (thinking of Erica). I was told usually within a week you'll develop symptoms....SO, I can't stress enough how much I need you to be praying that Kara and anyone else in our family that's around Kara doesn't come down with strep or any other illnesses before we head back out to SJ.....Also, keep praying for Charity and her family, as they are facing a similar situation with illnesses, only Charity is scheduled for HEART SURGERY on Jan. 26th. Kara is doing okay. She slept very well last night. She didn't cough a lot, but this a.m. she just doesn't have much of a desire to eat. She is playing, and all. I know this just has to run its course. School was cancelled today. I know the kids are glad for that....It is SO cold here! We are trying to get things back in order here at home, and trying to take care of phone calls, and everything. Thanks for checking in on Kara, and for all the prayers.....
Please keep lifting up Princess Brooklyn's family in your prayers, too, as they are grieving. We appreciate you guys!
Megan
15 Jan 2009, 10:43pm EST
Greetings from HOME! We arrived here this evening.....Kara is asleep right now, she didn't nap the whole ride home, while Lauren is still awake, and got her nap in today. Erica & Brent are still staying overnight with family. Brent went to the Pediatrician today, and found out he has strep throat. He will be back home after he's had the antibiotic 24 hrs. (which will be tomorrow evening). Since Erica was exposed to him, she is staying overnight somewhere different than him. We definitely don't want Kara to catch anything else!!! It was in Kara's best interest not to be sedated for her MIBG scan, and her bone marrow biopsy. I spoke with her Anestesiologist and he said that the scan wasn't an emergency, and he had a child who had strep around New Years, had the antibiotic for 2 weeks, had a good day, and after his sedation, had complications. So, it was much better to play it safe. Her Oncologist agreed with him, and also didn't want to try the glow medicine injection for her MIBG scan not knowing if she could lay still (due to her coughing) without being sedated. We did get her CT scan completed. The only thing I know about that relates with her virus. In that aspect, it is okay. Her N. Practitioner also told us her cough is okay like it is now. This morning the rash that she developed Tuesday had changed. So, they decided to swab her throat to culture, to rule out strep. A strep rash can look similar to the rash she has now. I will call SJ's tomorrow to find out the results about that. Her sodium was still low today for some reason, and they want a follow-up on Monday at Children's to recheck it. Her crown repair is also scheduled for Monday, so I will reschedule that to be fixed within the next 2 weeks. We head out for Memphis again on Tuesday afternoon (I think the date is the 27th), and she'll have her bone marrow biopsy on Wednesday, and her MIBG scan on Thursday. Right now, Kara will not be starting anymore Accutane. We did speak today with her N. Practitioner about this briefly. Some kids only have 6 rounds, she has had 7. Her Dr. didn't want her to start anymore Accutane. She isn't on any chemo right now. Her Oncologist wants her to have her testing in 2 weeks, and then decide whether she needs anything further. I really believe the Lord touched Kara's body, and I am looking for a good report when we go back! I do desire your prayers that Kara will not develop anymore illnesses between now and her testing! THANK YOU! I also have another prayer request to pass on: Charity Cheek was born with serious complications to her heart. Several valves are malformed. The family desires God's perfect will to be done. Charity's surgery is scheduled for the morning of January 26th. The family is asking for prayers specifically that Charity doesn't come down with a cold or any other respiratory illness that would cause surgical delays. Please remember Charity and the Cheek family in your prayers, also !!! Thank you for your continued prayers and for checking in on Kara..... God bless,
Megan
14 Jan 2009, 4:47pm EST
Megan just called..........they will be coming home in the morning. Dr Furman IS in agreement that it's in Kara's best interest to wait on the scans since she can't have them unless she's sedated. They are to return in 2 weeks to complete the tests. St Jude will call them tomorrow with the new schedule. Another night in those soft fluffy beds at the Marriott, Awe, what a shame............but I know, Megan & Tony are saying........there's still NO PLACE LIKE HOME! I think I should add that this virus is very contagious....St Jude is making the Lee's all wear masks, gloves and gowns, and stay in isolation rooms while they're in the hospital and they have to enter the hospital through the isolation entrance. Antibiotics won't work against a virus, so there is no treatment, just let it run it's course, treat the symptoms, and pray that your body is strong enough to fight it off. We know by her blood counts that Kara's body is trying to fight it off.............which is Wonderful News!! They are giving her Tylenol for fever, and the nurse said to give her Robitussen during the day, to break up the chest congestion, and eye drops may help her eyes. They are very red and crusty. So, this might be helpful for anyone out there who has it. Pray for safe travels.................and pray for the other children with life threatening illnesses. Megan has run into several families who they have gotten to know this past year and all seem to be doing pretty good. We love you T.J., Chloe, and Blake!!!!!!!! We're praying for continued healing!!! God Bless,
Mary
14 Jan 2009, 3:59pm EST
This is Mamaw Mary, Megan & Tony are very busy with all the appointments and conferences with the Dr's and nurses. As you know from the latest updates that Kara has been running a fever and has had cold symptoms. Well, on their way to St Jude, Megan called me asking for prayer, Kara has broken out in a rash and they didn't know what to make of it. Tony called St Jude's and since It seems to be moving to different places on her body, the Dr @ SJ said it sounds like it is related to the virus that she has now. The Dr would be there all night if they thought Kara should be looked at. When they got there they went on to the medicine room and Kara was given the medicine to protect her thyroid, then they found out the Grizzly House was full, so they had to go to the Marriott motel downtown. I think she said it was midnight before they got to bed. Which is 1:00 am our time). But, thank God all went well and they got there safely. Today Kara has had her CAT scan, and then she WAS to be injected with the radioactive stuff for the MIBG scan tomorrow. Well it may all be cancelled. The anesthesiologist doesn⤙t want to sedate her, he said it can cause complications because Kara has congestion in her lungs. It's not an emergency, so he'd like to wait until she is over this virus. The nurse said they have seen this virus a lot lately and it lasts 2 weeks. Dr. Furman, the oncologist, wants to go ahead with the MIBG scan and bone morrow biopsy tomorrow. The anesthesiologist wants to have a conference with Dr Furman before they inject her, he really wants to reschedule. So Megan, Tony and the twins are eating O' Charley's rolls and waiting for a call............Kara is eating well, which is good, and her blood work was good, it did show she was low on sodium, they don't know why, but they can boost her salt intake to fix that. Megan thinks they'll be coming home tomorrow.......start another round of oral chemo on Tuesday, and then in February go back to St Jude for they rest of her tests. This will be her 8th round of accutane. Megan's sure Dr Furman is wanting to know what's going on in Kara's body so he'll have some time to think about her next course of treatment. We want to know too. Yet, we also don't want to put Kara at any risk when she's sick. We know her last test in Aug. showed some improvement and she has been feeling good, except for a few virus, which can be explained, so we really do think all is going well in her body...............but there is always that awful doubt that keeps creeping in. I wish we could overcome it. PLEASE continue to keep Kara in your prayers that the right decisions are made and we stay in God's perfect will. I'll give Jeff another update as soon as I hear from Megan again. Thank you, we really appreciate your support , kind words, and many prayers. We love you all. God Bless,
Mary
13 Jan 2009, 11:52am EST
Praise the Lord! So far, everything is going as planned. We will be heading out for SJ this afternoon.....Kara's temp did go up last night, we took her to Children's E.R., strep and flu test were negative, and they drew blood to culture. If something grows, they will call me. They also said this is probably viral. Her Oncologist at SJ said she's already been delayed, and he would go ahead and make the trip. I was also told that they probably won't sedate her if she's running a 101-102 fever ~ she can run that 2-nite, but tomorrow, we don't need that! Thank you for praying! She had a headache and low-grade fever this a.m., still has the runny/stuffy nose with a cough. Please pray that everything goes smoothly this week, and protection for Kara! We appreciate you guys! This makes things so much easier right now.....My Mother-in-Law had taken off work to help out with everything, and I would've had to probably reschedule Kara's crown repair she's supposed to have next week and everything, too, so I am relieved that we can go ahead as planned..... God bless,
Megan
12 Jan 2009, 5:57pm EST
Well, Kara's temp is elevated. I've called SJ about it.....Uless her temp goes up some more, there's no need to take her to Children's for blood cultures, (even though I am really assuming this is something viral working on her).....So, if her temp goes up some more, it looks like I will be taking her to the E.R. She does look weak through her eyes ..... As far as our trip goes, I have most everything ready to be loaded except for last minute things, but everything really hinges on how Kara does. If she has a high temp, vomiting, or if her lungs aren't clear then they will not sedate her. I also had to make a half-panicked call to SJ because while I was getting Kara's med's together I realized a certain med she has to take (starting tomorrow) had expired in December! Yikes! This is one that she HAS to start taking a day before they inject her with the glow medicine, as it protects her thyroid. They prefer this to be given as 1 drop, 3 times throughout the day. This too, has worked out, they reassured me that she can take the medicine as 3 drops all at once when we make it to SJ's pharmacy tomorrow night when we come in. It's easy to get frustrated, and stressed and disappointed, but after thinking about it, I realize that nothing has happened that's taken God by surprise. He is in control, and this will all work out. So, we take it one day at a time......I will let you know whether we leave tomorrow or not. The way I look at it, it's better for this to happen now, then to be in Memphis when this starts, and for us to make a trip and not get everything accomplished, everything can be re-scheduled.....but, I'm hoping it won't have to be! God bless & keep praying,
Megan
12 Jan 2009, 9:18am EST
Hello! Just wanted to let you know I may not update again before we head out of town tomorrow afternoon....Kara has a little bit of a runny/stuffy nose and a cough, but so far no fever! Still be praying this doesn't happen - I don't want to have any setbacks if we can help it this week! Lauren's cough is hanging on, and she's been pretty irritable and tired, but she's over the worst....We've made arrangments for Erica & Brent this week, and today and tomorrow I'll be getting things in order around here before we head out. Please keep praying for Kara and also that we have a safe trip and for everyone back here at home while we're away.....Kara is due to have things start on Wednesday, she'll have a CT scan with contrast of her pelvis, abdomen and chest, and an injection of "radioactive glow medicine" into her central line. On Thursday, she'll have the main scan (MIBG) which will show any glow of Neuroblastoma. She will also get her labwork done, and have her bone marrow biopsy. The last bone marrow Kara had was before transplant (probably March 2008) which still showed 5% Neuroblastoma. They insert 2 needles into her lower back and take samples. Please pray that everything goes smooth for her this week. (She is sedated for this procedure). Either I, or I will have Mom update for me this week. I don't know if we will know the results of every test before we head out - (planning to head home on Friday), but the MIBG scan tells them a lot. I still desire your prayers for the next step in her treatment, that GOD'S WILL is done in this. THANK YOU! Megan
10 Jan 2009, 10:30am EST
Hello! Our evening went pretty smooth last night. 3 of us Moms went to the Mall with 4 girls, (Erica, her cousin, a friend from Church, and a friend from school) - By the end of the evening the girls were giggly and had a fun night. One store in particular, they spent a lot of time in, the girls (in pairs) bought something to match each other. They even had a lot of fun on a 3-8 year old kiddy 75 cent 'ice cream truck' ride. They also paired up again later - on a couple of massage chairs....silly girls..... When I got back, everyone was gone already. Tony was at work, Brent was already at a friend's house staying over - (and had a lot of fun too), and the twins were at Mamaw's for a sleep-over. I went over to Mom's because I needed to change Kara's dressing on her central line. She fell asleep on the couch while she was waiting for me to start everything. Lauren laid down on the couch for a couple minutes, then quickly got up to head to Mamaw's bed for the night. I was with them for about an hour or so, before I headed home for the night. We've had a quiet day here at home. Tony thinks he has something viral, but Lauren is getting over the worst of the "yucky's" she's had this past week. So far, no fever for Kara - I am really glad for that! I told Tony earlier today that we could take our Christmas tree down now, since it is the 10th of January. He said that We could just leave it up for next year...... :) One of these days we'll get it down. Kara turned the lights on it the other day. I have started sorting clothes for the kids for next week. I keep notes on the counter of stuff I don't want to forget to do, or something I don't want to leave behind. I live by note-writing.....Tony will be working Monday & part of the day Tuesday, then we will head out Tuesday afternoon. Memphis is an hour behind us, so we will gain time going. We'll get in sometime that night and check in at the Grizzly House. Lauren asked me if they would get to put their handprints on the wall at the Ronald McDonald House this time. I'm thinking Kara was in isolation when we left SJ to come home in July '08. The walls around the kitchen area (that has about 4-5 kitchen stations) have so many different colored hand-prints with the patient's name, age, and diagnosis with it. Sometimes there's a verse, or a picture painted with the handprint. Please be praying for us this trip. It would be nice if it would work out that she could continue on the Accutane, but I don't know if that's what's going to end up happening. PLEASE PRAY FOR GOD'S WILL ABOUT ALL THIS. A lot of children on the protocol have 8 rounds (Kara has had 7) of Accutane, and then they go on 8 rounds of oral Topotecan. The thing I really dread with the Topotecan is that it can lower the blood counts, sometimes at levels of needing transfusions. I also don't like to think that maybe her immune cells would be lowered, putting her at an increased risk of infections and fevers. (I'm thinking I was told when Kara had it in i.v. form that it was hard on the platelets. If her Dr. mentions the Topo, I'll have to remember to ask about the white blood cells issue (immune cells). Maybe it doesn't affect their white blood cells too bad....????? (Kara is due to start K-Garten next August. - that wouldn't be a good combination!) Well, I've kept you long enough, and I need to go for now......Thanks for checking in on us.... Megan
08 Jan 2009, 11:33pm EST
Well, I forgot to tell everyone that Kara finished round #7 of Accutane on Monday p.m., and it seems like ever since Tuesday came, Kara's appetite has been a lot better. This morning, she came to me to let me know the pineapple I had in the fridge had melted. (All that was left in the bowl was the juice - Brent finished it up the night before : ) ~ She's had us smiling about it.... She & Erica were working on fixing a cake mix earlier, and it was in the oven cooking. Well, we also were heating up some leftovers in the microwave at the same time. Well, when the microwave started beeping, she went straight to the oven, thinking it was the oven, and that the cake was finished. I told her it was the microwave. She said, "Oh, wasn't I a dork?!" Then, as Mom was leaving our house tonight she had to tell her that Brent was "ignormable" .... I'm not sure what she was thinking, but they seemed to be having a good time playing around right before she said it - so I'll give her the benefit of the doubt! Mom and I thought it sounded like a combination of ignoramus, normal, and adorable. She's funny. She has also mastered whistling.....She is proud of herself, and is good at it. It didn't seem to take her long to get it. Tomorrow is grocery day for me...I need to get some things for next week, and later on we're spending some time with Erica's cousin, for her birthday, and she & Brent are spending the night at a friend's house, too. They are looking forward to it. Mom thought if Lauren was doing better, maybe she & Kara could stay overnight at her house. Lauren has still been under the weather. She ran a temp this evening, and got sick again. She's having a time getting over it. Today seemed to show some improvement from the days before. Erica is doing a lot better. Please keep praying Kara doesn't catch this! Megan
07 Jan 2009, 11:56pm EST
I haven't been on the computer in a couple of days, and as usual, (it seems to be the norm anymore that I include this) : "things have been busy".... and also that someone is sick around here..... This time, it happens to be Lauren & Erica. I wasn't planning on sending Erica to school if she was still running a fever this a.m., but school was cancelled today. I am glad that Erica & Brent were at home again today with me. Monday, Tony took Erica to the Dr. to have her tested for strep throat - Negative. Yesterday, I took Lauren to the Dr. and her strep test was also Negative. Somehow, we have another virus in our home. Lauren acts like Brent did a few weeks ago. But, he corrected me tonight at bedtime, when Lauren was coughing so much, that he didn't have the cough when he was sick. So, PLEASE pray that KARA doesn't get this nasty bug. So far, Lauren's fever has hung around for the majority of yesterday and today. Erica's fever left this afternoon. She is holding out better than Lauren. I would really not like to see any complications for next week's trip to Memphis. If Kara catches this and starts running a fever next week, I'm wondering if we will have to wait on sedating her for some of her tests. I know it will just be another bump in the road, and it will all work out, just like everything else has so far. God is in control, and I believe all things are working together for our good. It seems like I have mentioned a lot about sickness or Kara running a fever here lately. I was talking to Tony yesterday, and we agree that it seems like we are dealing with viruses more this year than previous years. (Maybe we are just noticing it more now that we take Kara to the e.r. everytime she runs a fever ????) Since this past summer, we have taken her to the e.r. during every round of chemo, except one, but I think December has made up for the one missed round !!! That is just part of it, though. We deal with it, and go on. I AM thankful we are able to be here at home during this phase of Kara's treatment, and that Children's in Knoxville sees Kara when she needs bloodwork, or when something comes up that needs attention. We are thankful to have the help we have here this close to home. God has been good to us...I called SJ today, and they have us scheduled as coming in on Tuesday, and leaving out on Friday...(week of the 14th) Lauren will be traveling along with us, and Erica & Brent will stay with family. Please pray for God's guidance for us this year. We appreciate you all..... Thank you for all your prayers for Princess Brooklyn Faith Durham. Please continue praying for her family. I know they appreciate it. Also, please remember the little girl, age 3 with ALL, named Alexa Maynard. She and her family need our prayers, too. There are even more.....Carrie, Caleb, Claire, our neighbor, Margaret. Thank you, Thank you, Thank you....
Good night, & God bless,
Megan
02 Jan 2009, 10:27pm EST
PLEASE BE ESPECIALLY IN PRAYER TONIGHT AND THE COMING DAYS FOR PRINCESS BROOKLYN'S PARENTS, SIBLINGS, AND THE WHOLE FAMILY. BROOKLYN HAS LEFT THIS WORLD OF SUFFERING, PAIN, AND DISEASE FOR A HEAVENLY, ETERNAL HOME IN GLORY, FILLED WITH ETERNAL JOY, PEACE AND HEALING. BROOKLYN HAS GAINED HER ETERNAL HOME AND REWARD. PLEASE BE PRAYING FOR HER FAMILY, AS THE LOSS THEY ARE EXPERIENCING IS HEART-BREAKING. THANK YOU SO MUCH
02 Jan 2009, 9:28pm EST
We had a really good watch night service. It was the first time ever that Brent & Erica took part in our communion service. The parents stand behind their children when they go forward to take part. I love the way it is done. We always have it on our New Years Eve service. There is a table set up front, and there are 13 seats. Everyone who chooses to participate takes turns going up front at the table in groups of 12, and when every group goes forward, there is always an extra seat left open, for our Guest...Jesus. It is so special, and humbling to take part in this service. We remember and give Jesus honor and glory for what He did so many years ago on the cross for us as we take part in communion. God is so gracious to us....We were in the car traveling home, when the New Year rang in....Afterwards, we ended up finding a Subway that was open, and we got it and took it home to eat. Today, we had some friends over to visit. We had a lot of laughs watching them play the Wii. We had chili, chips, and desserts... I was telling someone today that I've gained 6-7 lbs. over the Holidays....WHEW! I think Monday will be a great day to start working on losing some extra weight! Tony was asking our friend tonight about those shirts that have the bubble in them....He said jokingly, "Why don't they make them straight?!!" :) We are headed to the eye dr. tomorrow. A year has passed since Erica & Brent had their eyes examined. They are due for a new pair of glasses. Erica wants contacts. I think we'll wait on that, though! Kara is doing well. I would like to see her appetite pick up more, but overall she is doing good. She has a little bit of a runny nose, nothing major. I just wanted to check in with everyone again. Please keep my cousin in your prayers, as she is expecting her first baby in the next few days. Please take time to say a special prayer this evening and in the coming days for Brooklyn's family. Shorty before 9:00pm this evening The Princess became an Angel. Brooklyn has made it, she is in eternal joy and rest. God bless you as always,
Megan
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