28 February 2010, 12:14am EST
We made it home very, very, early Saturday morning......Kara slept in, and Tony picked up the rest of our children from his sister's, and went on into work afterwards. He met up with us later our church's fellowship hall for a banquet....As we were getting ready to leave tonight, Kara mentioned her wig. So, Mom helped her get it ready, and she wore it for about half the night, until the hosiery cap that fits underneath started hurting her. She had fun without it, too....That was the first time she's wore it out of the house.....

Kara is doing pretty good. I wish her appetite was better, but she's really into playing at home right now. That appeals to her a whole lot more than eating & drinking! She sure was a trooper last week during chemo. Dr. Furman and her N. Practitioner, Sandy, came to the med. room for us to sign some papers, and I could hear him laughing outside the room we were in. He was getting a kick out of all the toys she had on her hospital bed.....She adapts so well to this lifestyle...Me, I long for the day when things can return to a type of "normal".

Kara's scans are already scheduled for the week of March 16th. Tony happens to be on a break at work, and the kids are on Spring Break from school - all except Erica. She happens to have her SAT's the 16th, and 17th. We are planning, if everything goes smooth, that Tony will stay at home, and Mom will go to Memphis with Kara & me. Erica's birthday also happens to fall on the 17th, so we will just have to celebrate early, I guess! I'm sure Erica won't mind! Please be praying for these scans....and that radiation never has to be mentioned for future plans in her treament. Thanks for keeping up with Kara & for the prayers.

Also, thank you to all who came to Papaw's visitation, showing, and/or sent your condolences....We appreciate this!

God bless,
Megan

24 February 2010, 6:33pm EST
Just a quick update to let you know that the nap did the trick for the headache....She's munching, but not eating as great as she has the past 2 days...She has been pretty happy & even felt up to doing some school work this afternoon...We will get to the Grizzly about 11:30 tonight....They weren't able to start before 1:30 today....I had the times mixed up....We are doing well, though! .....

24 February 2010, 12:26pm EST
Kara's not feeling the best today. She has a headache above her left eye. She's laying in Tony's lap taking a nap right now. Getting to sleep at 1 a.m., and getting up at 7:30 this morning probably has only aggravated how she's feeling. She was up a few times in the night, too. She would've slept fine, but the continuous i.v. fluids are causing frequent trips to the bathroom...This is what she needs though, because we don't want the chemo to settle in her bladder and cause agitation.

She has already had her hearing evaluation today. Compared to her last check-up, her hearing has stayed the same...Praise the Lord! She just has the same high-frequency hearing loss as before. This was a major concern of mine during her treatment, and God was mindful of us again! Her next hearing test will be in about a month. The Audiologist said that they really aren't seeing hearing loss in the children who are on the same drug that Kara's taking.

Kara was able to paint some pretty pictures this morning, to pass the time before they call her to the medicine room for chemo. Clinic has moved her chemotherapy start time up by 2 hours today. Hopefully, she will start at 11:45 today, and then she will end around 8 tonight. I'll have to cross my fingers....Things seem busy around the hospital today!

One good thing that has happened, is Kara's bloodcounts have risen more. Her ANC went from 785 Wed., to 1200 this morning! I hope her counts on this round are a lot better since she'll be getting the one-dose Peg G-shot to help them recover. Please pray when we get home it's pretty uneventful for her. After her last round, we think she had a virus that made her feel so sick. It happened to be at a time when her bloodcounts were so critical. Thankfully, no fever occured!

Well, thank you all for checking in, & praying for Miss Sunshine....She handles things SO well.....She doesn't normally complain, and she's been pretty mellow during her treatments. The Adivan they give to her before chemo helps this way...Well, I better go. It should be getting close to time for her to be called back to the med. room...If you think of it, say a prayer for my Dad & the family....Visitation for my Papaw Ernest Isaacs is tonight from & the funeral is tomorrow......You can go to: www.millermosterrobbins.com to view his obituary. He will be missed!

23 Feb 2010, 4:46pm EST
Even though appts. started today around 8, Kara's chemo didn't get started until close to 2....So, that gets us back to the Grizzly House tonight at about 12:30-1 a.m. .... Oh well....Everything checked out great this morning with Kara's ph level in her urine, and her chemistries are great, but as long as Kara is on a "study protocol" there are many technicalities that are a part of these treatments....There are certain rules that need to be followed, and thus part of the reason for the delay today. I guess it only is expected though, in order to have accurate information and documentation for research purposes. Dr. Furman also wants (and so do we) her to have the 1-dose (Peg-G) shot. This makes for some changes to things, and that all takes time, too. Also, because of all the medicines she is receiving, that means there's a lot of medicine that needs ordered, and it all needs double-checked before it's given to her, and this all adds time, but that is for her safety, so it's okay....It's just part of it.....

She won't receive the G-shot until after chemotherapy is through. We're looking at probably Friday when she will get this. A nurse in the medicine room will give it to her. We cannot give this to her, because of the risk & cost involved if it was contaminated & wasted. If all goes as planned, and Kara is doing good, we will be able to head home probably sometime Friday. Kara will need to get bloodcounts in Knoxville on Monday.

Her appetite is awesome, still. She ate nearly a whole order of breadsticks last night before bed, and has already had breakfast, a snack, & her lunch. She's also bought some chocolate, and we still have a long time before our day is through! Her weight to rising, but I'm sure the continuous fluids have helped.

Right now, she's not real active. She's had both benedryl & adivan as pre-meds before the chemo was started....Last round she never took a nap while the medicines and chemo were given. Chemo is running now, and so far, so good....She needs to stay in the med. room until all her chemo gets through, which is a total of about 4- 4 1/2 hrs., then she is free to roam the hospital. Tomorrow, and Thursday, this time will be cut by 2 hours since she will only receive 2 drugs instead of 3.

I'll update if there's anything new to report....
Have a great night.....
Megan

22 Feb 2010, 10:42pm EST
By the skin of our teeth, we made it here today. Kara's ANC needed to be 750 to begin chemo, and it was 785...Whew! Her platelets (96,000) and hemoglobin (9)are both up, too. Her weight is good. We are getting settled here at the Grizzly House, and Kara's getting ready to have her bath & go to bed. Right now she's laying down, and Tony's changing her dressing on her central line.....(He has been such a huge help through all of this. He is a great father!) Anyway, things have gone a little different going into this round of chemo......They have already hooked her up to pre-hydration i.v. fluids. This is good, because hopefully her urine ph level will check-out so she won't be delayed on starting her chemo right away. Last round, we were delayed getting started by about 3 hours because her ph level in her urine wasn't good enough. We have to be at the Hospital tomorrow at 7:45 a.m......She will get labs in the morning, a urinalysis, and then checked out in clinic. They have to give Kara clearance before chemo can begin. We will be in for some long days in the medicine room, but again, it's better than being in-patient at the Hospital. She will need to be in the medicine room while the chemo is administered, and then when post-chemo fluids are running, she will be able to wander around the Hospital. Every night she will get to sleep here at the Grizzly House, and will be on continuous i.v. fluids. They are transported around with her in a black satchel that holds the i.v. bag. It runs continuously because of a battery-operated pump. She will receive 3 chemo drugs tomorrow, and Wed & Thurs only 2 chemo drugs. I forgot until a nurse mentioned it tonight, that we have to be careful about having her exposed to the cold, and also drinking and eating cold stuff. It can increase the risk of unwanted tingling side-effects. She experienced some of this last month, and one day had a little bit of pain in her hands when she washed them under water. It wasn't anything unbearable at all, though, and it didn't last.

Kara's appetite has been great. She is on a McDonald's cheeseburger kick, still....Typical kid, I guess! We were able to stop in a store when we got to Memphis, and she picked out a musical instrument set....drum & drumsticks, maracas, & harmonica. She and Tony had to start practicing in the backseat right away.....Tony didn't think she should play them here at the Grizzly House. It's set up like a hotel, so we didn't think that the other residents would appreciate the noise.... :-) They were having fun in the car, though....I'm sure the rest of our kids are going to want to try them out when we get home! That sounds like something they could really get into!

I don't think I mentioned it, but Kara's results on herEcho/Ekg from last week were good.

I will try to update while we are here. If all goes well, I would think we will be released to come home sometime Friday...She should be on i.v. fluids until then. Please keep praying for her!

21 Feb 2010, 12:15pm EST
I'm sorry if my last update seemed all jumbled and mixed up. I didn't have a lot of time to spend on an update, and I was trying to keep the information pretty basic. I said that we would get bloodcounts on Monday, in Memphis, but that is wrong. The bloodcounts will be in Knoxville. I just typed the wrong information. Sorry. I will be getting ahold of St. Jude Monday, when I know her results. Many of you know that my Grandpa Ernest Isaacs, passed away Friday night. He made it through the surgery, but didn't make it through the night. I know I said this before, but, I am so glad that I was able to see him again at the end of January, and get some pictures taken with him. Thank you for praying.

Kara seems to be doing overall pretty good. So, we are going to clinic tomorrow, prepared to head on out to Memphis after her clinic visit. Today, I'm trying to get things in order around here, for this coming week, and just take care of things around here that need done.

I wanted to let you know that we appreciate the fasting and praying that has been done for our family. I hope you know we appreciate your sacrifice. Thank you for caring.... Please keep praying for her complete healing! Her condition will be re-evaluated again after this round of chemo (probably in about month.) Please pray she doesn't ever have to have radiation to her head. Thank the Lord for her improvement!

(If we leave for Memphis tomorrow, I probably won't get to do an update until Tuesday.)

19 Feb 2010, 1:02pm EST
Here are some of the basics that we learned this week. We don't have the results of the bone marrow biopsy, but the MIBG scan (very informative for Neuroblastoma) is showing a small improvement from the last one she had, on Jan. 21st. Kara's ANC was only 500 yesterday, so the plan is to get counts in Memphis on Monday to see if they are high enough (750 is the number she needs tobe at - not 1000, and her platelets need to be at 75,000) to begin a second round of this SAME chemo. She will continue at the same dose she had last month. Dr. Furman said that we will get the Radiologists' input on when he thinks is the best time to do radiation. We met with him a couple different times this week. He was very helpful, and allowed us to actually view Kara's previous MIBG scans, and her MRI in January. It really helps when you can see what they are talking about. But, from talking with him before the new MIBG was done yesterday, we were under the impression that if the current scans reveal improvement, then we will carry on with chemo, and radiation could wait. I am very pleased to think that we may not be doing radiation right now. I wasn't wanting to have to radiate her head. I pray that this is never needed. We were told that the previous radiation Kara received to her abdomen in May/June 2008 following her transplant was curative treatment. This radiation that we have been talking about this week, that would be to her head, would be pallative treatment. Please keep praying & trusting in Kara's complete healing. I am thankful for the improvement! Kara didn't feel well on Wednesday. She had a headache in her forehead area & vomited once. She was still having congestion/sinus drainage. They gave her some morphine...No tylenol, because with a low ANC, if they give tylenol then it would hide a fever if it happened. This would cause a risk of hiding symptoms of a possible line infection, and that would be very serious. They scheduled a CT to view her sinuses, brain, and orbits of her eyes. Her sinusitus isn't as compacted as before, but they have started her on Vastin, which is a different antibiotic to keep treating her sinuses. She will be on this for 2 more weeks. So, depending on Monday's counts, we could possibly be returning to Memphis as early as early next week for a second course of this chemo, and then we would be able to return home. Then, the routine blood count checks would be needed in Knoxville, and the plan is to re-evaluate Kara after she recovers from this second course of chemo.

My Grandpa has been transported to Indianapolis for a heart procedure today. We found out all but one of his arteries are completely blocked, and the one that isn't completely blocked, has 95% blockage. My Dad & brother should be there now. I am thankful that we were able to see him when we were up in Indiana recently. Please pray for him, too!

Thanks!

15 Feb 2010, 4:55pm EST
We are leaving for Memphis Tuesday, 2-16-10. We have a consult appt. with Radiation, & Kara's glow medicine will be injected, both on Wednesday. Also, her MIBG scan and bone marrow biopsy will be done on Thursday. Whether or not an MRI is done, depends on the MIBG results. I don't know exactly when we will be coming home. Kara's bloodcounts in Knoxville today were decent. Her chemistries are good, and her ANC is up to 464. No transfusions were needed. I believe before she can receive another round of chemo, 21 days should be between the rounds, and I think we will hit this mark on the 18th. Also, I think her ANC needs to be up to 1000 before beginning. So, it all depends on Kara when we get to start, and also the results of her MIBG scan. If it's worse, we will not go forward with another round of this specific treatment. Please pray that radiation isn't needed. I do NOT like the fact that we are considering radiating her skull. Maybe things will be better & we won't have to consider this treatment. Anyway, this is where we stand on everything today. Please pray for a miracle for Kara!

Jenny - I plan on taking Kara's backpack with her school stuff with us....She has been able to work on some of it since she's been feeling better ~ Thankfully! Take care!

Megan

11 Feb 2010, 2:17pm EST
Well, good news, I guess you could say! A couple important bloodcounts are showing an upward trend, one being her hemoglobin. So, she was able to avoid a blood transfusion today. Also, her white blood cells are rising. Her platelets have dropped some more, and we found out her ANC level (determines how much immune system defense she has) is pretty much nothing, and is about bottomed out now. I told her Dr. I was curious, because I was wondering about sending her to school. He went on to tell me, "No, I wouldn't send her just yet." So, she will not be going again tomorrow. She did do some work in clinic today. She also needs to be seen in clinic again on Monday. Hopefully, we will see a big jump in her labs by then. Her chemistries are good, but she's still a little low on potassium. So, we just need to push the bananas!

You can definitely tell she is feeling better...Praise the Lord for this! Please keep praying about rising bloodcounts!

Thanks!
Megan

10 Feb 2010, 4:18pm EST
Things are definitely so much better today! She has wanted to eat (some lasagna, peanut butter fudge, toast, and cheddar crackers so far!) , and is drinking every hour or so, and going to the bathroom fine - minus the diarrhea & vomitting! Finally, we are seeing a significant difference in her! :-) Thanks for the prayers & checking in on her! She still will be going to clinic tomorrow for bloodcounts. So glad to see this improvement!

Please pray for Westin Dietz... http://www.caringbridge.org/visit/westindietz.

Megan

9 Feb 2010, 4:47pm EST
Today, in clinic she had 2 boluses of fluids to hydrate her. Her sugar, and her potassium were on the low side. Dr. Malik said to push the drinking. She actually woke up this morning thirsty and ready to eat some toast. She ate a piece, and drank, and an hour later it all came back up. (This was with anti-nausea medicine given about an hour before she ate.) She has had diarrhea today, and some red blood cells and ketones showed up in her urine sample. They said this could be because she was dehydrated. Since this mornings episode, she has actually wanted to eat, and has drank without really having me make much of a big deal out of it. She had 1/2 grilled cheese, and a granola bar. She fell asleep again on the way home today, and hopefully she will continue eating & drinking, without anymore sickness. She will need to be seen again in clinic on Thursday. If her hemoglobin doesn't do a U-turn she will need a blood transfusion then. It was 8.2, and they usually transfuse below 8. Well, I will go. I've got a to-do list waiting on me! Pray for Kara's counts to rise on their own! (Her WBC's did rise a tad on their own.....wondering if they will continue to rise on their own, or if this is due to a virus....hmmm.....not sure.) Well, take care & enjoy your Tuesday!!

Megan

8 Feb 2010, 9:28pm EST
Hello....I guess I'll start off from Friday....Kara had a really good day, went to school, & to my surprise came home & was still energetic & acted like she felt pretty good. Well, overnight, things changed. It was a chore (and still is) to get her to drink and eat. The food issue is touchy. We encourage, and give her what she wants to try, and sometimes she will want to dismiss it once the food is ready. Sometimes, she will eat a few bites. One thing I've noticed she is eating over most, is sweet food. I know she needs foods with protein most right now, but I'm just going with what she wants! Hey, I will take what I can get her to eat! Most importantly, we have to keep her hydrated. She has complained with stomachaches off & on, and has had some loose stools, and a couple episodes of vomitting. We're not sure whether all this is a virus, from the chemo, or due to low blood counts. Maybe it's a combination of a couple issues. Today in clinic she received some i.v. fluids to help hydrate her some, and she also received a boost of platelets. They were critically low. They are now half of what the low normal level is. She is very close to getting a blood transfusion. Today was a different sort of day for us. She had a urinalysis, and it showed a few white blood cells in it. Her Dr. wanted a repeat urinalysis since she was a little dry, and wanted to check it after she received the fluids. Well, we really had a time getting her to void. A few minutes before 5 today, she went, and her Dr. was surprised that the amount of output wasn't more with the fluids she received. So, we are going back to Knoxville tomorrow. She will probably get more hydration, and be checked out again. Her defense is even lower now, too. Her ANC is below the 500 mark. I was reminded again that if she runs a fever tonight to call the Doctor. (We did make it through the weekend without one!) :-)Please pray that her counts start rebounding and trend upward soon! Our trip to Memphis could be delayed because of her counts. Everything is day by day, week by week, month by month, around here! Thanks for checking in & for your prayers!

04 February 2010, 10:46pm EST
Well, Kara's clinic visit let us know that her counts are indeed falling still, but she isn't quite at the transfusion levels yet. If she makes it through the weekend without a fever, she will be seen again in clinic Monday morning. No doubt, she will be needing some blood/platelets then. Both Oncologists seem to think it's pretty likely she'll spike a fever and land in the hospital this weekend. If this happens, she will automatically have her counts checked in the E.R, and if she is at the point of needing blood/platelets, she will receive them. Her weight has dropped some. She did vomit for the first time during this round of chemo at about 2 a.m. today, but she's still eating and drinking, and playing. She ended up falling asleep in the car on the way home from Knoxville today. If she's up to it in the morning, we will let her go on to school. She missed Monday, Tuesday, and also today. Maybe we will be able to get 2 days in this week. She does love it & looks so forward to it when she goes. She & Lauren were able to celebrate the 100th day of school yesterday.

Please keep praying for these children affected by cancer....I'd like you to remember a lady named Ty-Lissa who has cancer. She lives in my old hometown, and isn't much older than me.

Have a great Friday....

03 February 2010, 4:19pm EST
Well...I am behind on updating again....We made it home Monday night. The chemo went smooth for Kara. She still has a touch of nausea at times, but NOTHING serious....We have to encourage her to eat & drink, but she is doing it. They kept Kara on fluids throughout chemo, and her chemistries were good, so they unhooked her from the i.v. fluids in clinic.

Kara's counts already started dropping - right away this time. Monday her labs were:

ANC: 700 (Once this number gets to 500, and a fever spikes, it's automatic admission.)
WBC: 1.3 (Low)
Hemoglobin: 10.4 (Still fine, but dropping)
Platelets: 84,000 (Low, and has fallen fast)

Kara's weight was still good. She has grown from last month. Kara will need to be seen twice a week in Knoxville clinic. They will do a physical, and check bloodcounts, and chemistries. Tomorrow, she will be going to clinic. I am expecting transfusions before long.

Kara is in the St. Jude schedule for mid-February. Kara is "The Boss" as to whether we get to keep this schedule or not. These dates could change if her bloodcounts are slow to recover, or if she would end up inpatient in Knoxville and a conflict in schedules arise.

Once there, we will meet with the Radiation dept. Kara will also have an MIBG scan, and possibly a bone marrow biopsy. Dr. Furman will decide on whether the bone marrow is needed or not. She will also have an Echo/EKG, and a hearing test. These are routine for this treatment plan.

I have questions for the Radiologist...., and naturally, I wish she didn't have to have radiation to her skull.....Please keep praying for our 'Lil Miss Sunshine.........Her spirit shines. I should strive to be more like her!

Please pray for another cancer warrior, named Kayla. She has cancer, & she goes to the same school as Kara. There is going to be a benefit auction held for her & her family on Feb. 12th. I know they will appreciate it greatly!

Tony just got off the phone with Make-a-wish. Good news for Kara! I'm not sure if I let you all know or not, but Kara changed her mind on her wish about 6 months ago. She wants to have a playground instead. So, right now, we are just waiting on the building permit, and ordinances. There is a general contractor that wants to build this for her. Kara's asked for a pretty big wish, and we are grateful for this organization & all that they do for these children!

Thanks for all that you do!
Megan