Please let everyone know that we (the family) appreciate all the comments in the guestbook, it's nice. And the prayers too, we know God can move for her and this is what we need right now. Who ever visits the web site, just let them know that we appreciate them helping to make this prayer chain bigger and getting the word out.
A note from Megan's Mom - I'm amazed at all the people who are signing the guest book, Megan is checking a couple times a day and she said it's really encouraging to them. Just knowing the concern and prayers that are being said for Kara's benefit is uplifting. I'm sure we have the good Lord's attention!
All of updates are provided by either Megan Lee or her mother, Mary Isaacs.
31 March 2008, 7:35pm EST
Countdown to Transplant Day -7
Day #2 of High dose chemo
Just a quick update tonight - we noticed this morning right away (before her 2nd dose of chemo) that her appetite had already decreased. She is eating, (they have her on a low bacteria diet), but not as much as yesterday. She's not sick, she just isn't feeling very hungry. Yesterday she ate so good. I guess you always feel better when they're eating and drinking good. We are keeping track of her in's & out's and the nurses are keeping track of her calorie intake, too. They don't want her to lose weight, and if needed, there's always i.v. nourishment, called TPN. I don't think it's uncommon for the kids up here to use this. Chemo changes your taste, and can cause mouth sores.
Kara's bloodcounts are good, the CRP number that was elevated yesterday to 4.4 is down to 1.9 today. Her phosphorus in her chemistry today was a little high, but they check her chemistry & bloodcounts every morning, and everything is being watched. They're keeping a watch on everything. I did ask her nurse today if the high dose chemo would casue her counts to drop around the same time as regular chemo. The answer was yes, (which is 7-10 days from the start day), and could drop a little faster, and stay down a little longer.
Tony moved our stuff out of the Grizzly House today, and into the Ronald McDonald house. Since Kara will be staying at the hospital, they needed to free up our isolation room, for someone who needs it. Isolation isn't too uncommon these days. Please keep praying for all the little children & for Danny Parsley. It was good to hear he was able to be at Church last night.
We love you all...
Megan
30 March 2008, 7:00pm EST
Countdown Time!
-8, Day 1 of High-Dose Chemo:
We are settled into our nice, big, spacious room up here on the 4th floor! The first thing Kara said when she looked out her window was that you could see the Arkansas bridge. It's always lit up at night. You can also see the big gold dome outside our window, the new Chili Care Center building, the huge silver pyramid, the big downtown office buildings, the bridge to Mud Island, and also the interstate. It's great to have enough room in here, and also to be able to see so much from inside! We were given a tour of the floor last night. Every wall, (except one that has mirrors), outside of the patient rooms have something painted on them. It is so colorful. The one wall with the mirrors has a ballerina bar on it. Across the aisle, (you can see it when you look in the mirror), the wall has a mural with kids dressed up like ballerinas on it. The floors are colorful, too. Outside our room, there is a huge rainbow that stretches across the front of the nurses' station . One floor in the hallway that I noticed, was painted to look like a running track. Each "lane" had a number on it. Our room has turquoise squares on the floor, and the girls were hopping around those last night. Needless to say, it is nice up here!
The nurse practitioner said that she is coming in up here good & strong. She looked her over and said she looks good. Her labs were good today, except one level was elevated. It was her CRP. I didn't know what that was for sure, and after talking to her, we understood that since it was elevated from 3.9 to 4.4, this meant she could have infection, or the start of infection. She is not running a fever, and she also noted that she had recent dental work done. This could also be the reason why it's elevated, since they were working around in her mouth. Hopefully the dental work is the only reason for this elevation. We don't have 1 pinpointed definite answer, but they started her on Augmentin, an antibiotic, just to have our bases covered. Her current weight has fluctuated around 1/2 lb., so I'll say 36 lbs. for right now. She looks so good to see her. :) She's eating and drinking good so far, too.
Please continue to pray for Danny Parsley, Brooklyn Durham, Nyesha, and all the little children. Also, please pray that God continues to protect Kara & Lauren from illnesses, and that Kara's cancer is completely eliminated, and that she is protected from painful and serious side effects. Thank you !!
Have a blessed Sunday, and a great Monday .....
Megan
28 March 2008, 11:16pm EST
The day started out with going over the details of the bone marrow harvest and consenting with Dr. Kasow. The procedure will be like when Kara has her bone marrow biopsy, only they will manipulate Lauren more. Lauren will be sedated Monday morning, April 7th. There will be 2 pokes in each side of her pelvis (she will be laying on her belly while this is done.) But they will move the needle on each side of her hips around to collect the amount of marrow that they need. Someone will be in the procedure room to let Dr. Kasow & the nurse practitioner know when they have collected enough. They will only collect an amount that is safe for Lauren, and this will also be enough for Kara. Lauren's marrow will be screened to see if there is a virus, or bacteria in it. If there is a problem, they will let us know. The downside to this is, that by the time they find out if there is a problem, it will already be inside Kara. We don't expect this, but if this happens, they will let us kn ow, and take the necessary measures that Kara will need. Kara will receive the marrow later the same day, and the infusion will take 2-4 hours to complete. This is the transplant! Lauren will be sore, but she will be given pain medicine. Within 2-3 days she should feel normal. She will need to have her bandage removed the following day in clinic, and have her hemoglobin level checked, since the harvest will cause her red blood cell level to drop. Her body will replenish her own cells, they just want to check her level again to make sure it's okay. She will need to continue her multivitamin with iron for a month.
Lauren was seen by another doctor today for donor clearance. She passed !! Her white blood cell level was a little low, but it was still okay. One of her chemistry levels was high and we were told that it goes along with seasonal allergies (which she has symptoms of sometimes). She has gained weight, and grown from her last check-up in October. They will check Lauren's labwork again, probably next Friday, closer to sedation. Please pray that she stays well! It is so important that she doesn't get sick once we start the chemo!
Today, Kara's had another great day. We found out that she has 2 negatives for VRE (VRE is what's causing her to be in isolation). This is great news. They swabbed her again, and next Friday will be the end of the week waiting period to see if we get the 3rd negative that we need to be released from isolation! This will help out so much, because Kara could leave her room to play or walk around during this long hospital stay. We also found out that the transplant department will be moving to the new Chili Care Center building ( probably sometime while we're in-patient.) It has larger rooms, and also washer & dryers, and showers on the same floor. Just having a larger room will help! Moving to the new building will give us something to look forward to. :) Her labs were good again today. And since I found out what it is on the chemistry that can show a connection with seasonal allergies, I decided to check Kara's, too. She also shows high in tha t area, like Lauren. The labwork that shows how well her kidneys & liver is funtioning was good, too. That was music to my ears! She's not having any problems there, you just get concerned with things when your mind gets to thinking and wondering! (Dad and Tony tell me I think too much - is that possible ?!!) :) :)
Tomorrow's the day of admittance - please continue to hold Kara & Lauren up in prayer !! God has really been good to us - He is so faithful ! Tony was reminding me yesterday about the 3 Hebrew boys, and what they said when they were faced with the fiery furnace.
Daniel Chapter 3:
16: Shadrach, Meshach, and Abed-nego, answered and said to the king, O Nebuchadnezzar, we are not careful to answer thee in this matter.
17: If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.
18: But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image wich thou has set up.
21: These men were bound in their coats, their hosen, and their hats, and their other garments, and were cast into the midst of the burning fiery furnace.
23: And these three men, Shadrach, Meshach, and Abed-nego, fell down bound into the midst of the burning fiery furnace.
24: Then Nebuchadnezzar the king was astonied, and rose up in haste, and spake, and said unto his counselors, Did not we cast three men bound into the midst of the fire? They answered and said unto the king, True, O king.
25: He answered and said, Lo, I see four men loose, walking in the midst of the fire, and they have no hurt; and the form of the fourth is like the Son of God.
26: Then Nebuchadnezzar came near to the mouth of the burning fiery furnace, and spake, and said, Shadrach, Meshach, and Abed-nego, ye servants of the most high God, come forth, and come hither. Then Shadrach, Meshach, and Abed-nego, came forth of the midst of the fire.
27: And the princes, governors, and captains, and the king's counsellors, being gathered together, saw these men, upon whose bodies the fire had no power, nor was an hair of their head singed, neither were their coats changed, nor the smell of fire had passed on them.
28: Then Nebuchadnezzar spake, and said, Blessed be the God of Shadrach, Meshach, and Abed-nego, who hath sent his angel, and delivered his servants that trusted in him, and have changed the king's word, and yielded their bodies, that they might not serve nor worship any god, except their own God.
Tony was reminding me that the Hebrew boys said, "God will deliver us, but if not, ........" and that it's faith that moves God. Our pastor has said numerous times that God doesn't always deliver us from the fire, but He gets in there with us. How true it is, but I want to stress how faithful He's already been with us. He has met so many needs of ours, and our wants, also. He is our Provider, our Healer, our Strength, our Joy, our Saviour, and our Friend. He has helped our family so much. Kara has tolerated her treatment really good. I've mentioned before how God has protected her & Lauren from illness, and how she hasn't vomited in months from the chemo. He is able to allow them to go through this next process just as easily. Nothing is too hard for Him - what is cancer to our Creator ?
God bless, and good night ....
Megan
27 March 2008, 7:06pm EST
Well, I need to apologize because on yesterday's update, I realized that I messed up the date of transplant. One of these days I'll get this right !! The days of the week remain the same, and she will still be admitted on Saturday, but it is the 29th instead of the 28th !! So, that means that the transplant will still be on a Monday, but it will be the 7th instead of the 6th. Sorry for the confusion. We will begin a countdown on Saturday, 29th (-9, -8, -7, -6, etc.) until we reach day 0, being transplant day. She will have a total of 7 days of high dose chemo, beginning on Sunday, March 30th.
Our main goal right now (besides getting rid of Kara's cancer, of course !) is that Lauren stays well. Once Kara has been given the chemo, it will damage her bone marrow where her blood cells are made. It will wipe out her blood, and she will need a stem cell rescue (or bone marrow transplant). Since her own cells weren't harvested, (because we are using Lauren's bone marrow) we have to rely on Lauren's donor bone marrow to be given on Monday, April 7th. This is really important! Please pray for protection from illnesses - especially Lauren right now !! Dr. Kasow said today that "hopefully" Lauren's cells, since they've never seen cancer, will recognize Kara's cancer as "foreign" and attack it. This would be absolutely amazing if this happens !! It's hard to know for sure what exactly will happen. I would love to think this is the case, though !!
Today, Kara had bloodwork done. Here are the results:
Hemoglobin : 12.1
Platelets: 268,000
WBC: 2.4
ANC: 1,100
Everything's pretty good, and her hemoglobin and platelets are within normal range !! Yay Kara !!
Kara has 6 silver crowns now on her back molars. Before she was completely sedated, I told her that I loved her. She answered me, "I love you." Then she said it again, "I love you, and I answered her, "I love you." She said this around 3 times. I thought it was so sweet. When I went into the recovery room, she was crying some. Her mouth was hurting. They gave her an I.V. narcotic and told me it's like 8 - 10 times more potent than morphine. It took effect within probably 10 seconds, but told me the coverage isn't long lasting. By the time we were leaving, her mouth was bothering her again. She's had one dose of tylenol with codeine since we've been here, and she's feeling better now. She's ate some mashed potatoes with gravy, and is drinking good. She's been up and about with my "clompety" flip flops, and has picked out a toy to play with. :)
Tomorrow Kara will have more labs, and a transplant clinic visit. Lauren will have a donor clinic visit tomorrow, and some sort of pharmacy visit, and then a harvest consent visit. It shouldn't be too long of a day at the hospital tomorrow.
Thank you for the continued prayers for Kara, our family, Brooklyn, & Danny Parsley. I'd like to add a new girl to our prayer list today. I believe her name is Nyesha. We met her and her mom at the Ronald McDonald House in December. She celebrated her 13th B-day at the same time as the twins. She is legally blind, and she is in I.C.U. and has taken a turn for the worse. She is on a breathing machine. We were in the I.C.U. /O.R. waiting room together today. Her mom was singing part of the chorus to a song that Nyesha loves. It's called, "I pray we'll all be ready." We recognized the song, and told her our choir at church sings it. She said she is at peace with God. Pray for Nyesha's healing & for the family's strength and comfort.
We appreciate you all & love hearing from you, too !! :) Have a great Friday !!
Megan
26 March 2008, 7:41pm EST
Today has been a real good day for the girls. We thought we'd take advantage of not having any doctor appointments and the nice weather, so we headed to the Memphis Zoo. Kara really enjoyed having an ostrich follow her around for a little bit. She mentioned how big it was! Lauren said her favorite animal was the little baby monkeys. Afterwards, Tony & the girls grabbed some ice cream. Then, we headed back home to the Grizzly House. Everyone's been relaxing ever since.
Before long, it looks like we'll be moving out of here, and back into the Ronald McDonald House. We need to move out, so we can free up this isolation room for another family who needs it. Since Kara will be in-patient for a while, we won't have to use an isolation room. When it looks like Kara will be discharged from the hospital, they will check at the Target House apartments and see if there is an isolation room open, if so, we will get to move in there! We are hoping we get to do this! If there's not an apartment available, then we will move back over here at the Grizzly House. Whatever happens is fine though, of course!
Kara's color is so good, and she has little dark stubble hairs growing in again where her eyebrows once were. She has little blonde hairs coming in on top of her head,too. We know this won't last long with the chemo she will be getting soon, but we have this to look forward to again, when transplant is over with! :)
Please continue to keep us in your prayers, especially the girls - this Saturday will be here soon!
God bless,
Megan
25 March 2008, 9:19pm EST
There isn't a whole lot to report today. Kara didn't have any appointments yesterday, and today she only had to be seen by the Ear, Nose, and Throat Dr. This was just to mainly check her anatomy. He said that transplant can cause fungus, so he just wanted to look at her today. We also signed the consent for the dentist. He will be fixing all 6 of her teeth on Thursday. She doesn't have any visits for Wednesday, and then on Thursday, we will consent with the transplant doctor, have her teeth fixed (she will be sedated for this) and then Kara will have a nurse visit. On Friday, 28th, Lauren & Kara will have doctor appointments, and then on Saturday, Kara will have her labs drawn, and a clearance visit for admittance.
Schedule:
Saturday, March 28th: 8 p.m. Admittance
Sunday, March 29th: High dose Chemo
Monday, March 30th: High dose Chemo
Tuesday, March 31st: High dose Chemo
Wednesday, April 1st: High dose Chemo
Thursday, Aril 2nd: High dose Chemo
Friday, April 3rd: High dose Chemo
Saturday, April 4th: High dose Chemo
Sunday, April 5th: Day of Rest
Monday, April 6th: Transplant Day
Please be in prayer for all of us, especially Lauren & Kara, that they don't catch any viruses, or have any complications, pain, bad side effects. Like I've said before, this is new territory for us, so please pray for all of us. We know we need to go forward with this process, but at the same time we're somewhat nervous. We know God is in control & with us now, just like He's always been. Please pray that we don't have any setbacks, and that Kara's cancer will be eliminated. Thank you for everything!
God bless & good night.....
Megan
23 March 2008, 7:09pm EST
The rest of our crew arrived safely Friday evening with Mamaw & Papaw Lee, and we've had a great weekend. Just being together made it great! Friday night, we all went out to eat, and the kids got a neat surprise. There was Mike, the balloon man, at the restaurant visiting the tables who had kids. He was offering to make animals out of balloons. All three girls got a monkey with a bunch of bananas hanging on a tree, and Brent picked out a fish dangling from a fishing pole. We got a kick out of Erica. She must have been really paying attention to how Mike was making her balloon, because while she was watching, she bent her head down to take a sip from her straw, and instead of her drink, it was the hand sanitizer bottle. Mike was like, "Duh, that's why they call it HAND sanitizer." She must have been desperate for a drink, because she even drank diet coke to get the taste out of her mouth.
Saturday, we thought we'd let the kids fly a kite at Mud Island, but the wind was still pretty chilly, so we decided against it. We ended up going out and letting the kids shop a little and we hung out in our room at the hotel. Mamaw & the twins played in the room, while Papaw, Daddy, & Brent played basketball, and Erica & I checked out the excercise room (not my idea :) ! ) After we were done there, we headed back to the Grizzly House to hide Easter eggs. They kids paired up while they hunted eggs. They had a good time. Today we were able to enjoy the morning & part of the afternoon together before they all headed back home to Dandridge. We were watching them drive by from the Grizzly House window. We were waving at each other and blowing kisses back & forth. (Take time to talk & listen to your kids while you have them with you close by, 'cause Tony & I have found that talking back & forth ! over the phone just isn't the same!) We hope everyone has had a great Easter Sunday. Please remember Brooklyn Durham, Danny Parsley, and all the little children in your prayers. Please be in prayer for Kara & Lauren too, and the upcoming transplant. This is new territory for us! Thank you, & God bless..... Megan
22 March 2008, 8:55pm EST
Added March pics of Kara and Family....webmaster
21 March 2008, 4:03pm EST
Kara's central line surgery went well. She had her old line exchanged for a new one. We are glad this is over with! Transplant has called; they are working on a new schedule for next week, and also for a new transplant admittance date. They are wanting to get her admitted a.s.a.p. Yes, that means it looks like her transplant date will be changed again! When I know the dates for sure, I'll let you know. Mamaw & Papaw Lee are coming to visit this weekend and bringing Erica & Brent. We are excited! I'm not sure when we'll see them again, so I'm sure this will be a great weekend to share together! The weather is supposed to be real nice, too. :) I know this is a short update today, but I really need to get some extra things done before everybody comes! Thank you for your encouragement and all the prayers for Kara & our family. Please pray that this transplant process goes real smooth, that Kara & Lauren are protected from illness, that Kara doesn't have to suf fer from pain & sickness from the high-dose chemo & side effects. Please also pray that God moves & her cancer is totally wiped out. I know we just need to totally trust God. It seems like we've been reminded of that more than once this week - I think God's trying to tell us something! Pray that His perfect will is done! Please pray for all the sick children, and especially for Brooklyn & Danny Parsley's healing, too! They need your prayers, too!
Have a Blessed & Happy Easter,
Megan
19 March 2008, 4:30pm EST
Well, we woke up to a surprise visit, from Bro. & Sis. Ingram today! They brought the girls Easter baskets with goodies, and prayed with us, and for us - We appreciate you guys! They had to hurry back to make it home in time for revival at church tonight. We hope you all have some great services - We love you all!
We had another surprise right after they left. The hospital called, and a little bacteria grew in Kara's urine culture, so they want a second sample turned in. Also, Kara will be having central line surgery on Friday, 21st. We had the nurse take a look in clinic on Monday, because Tony had noticed that her line marker had moved, meaning her central line has moved out of her chest farther than it's supposed to be. They will either re-thread the line she has, or she may need a new central line. They want to make sure that it hasn't moved out of her artery, and attached to a vein, and they also don't want to take the chance of it not working while she's in-patient for transplant. That would mean many, many pokes! We don't want that! Also, they have to wait a week after the line surgery to fix her teeth, and that puts us at March 27th for her teeth to be taken care of. Also, since it's been a long time, they need Lauren to signed off again by the doct or for Donor clearance. So, we're having some more set-backs it seems, but it's all in Kara's best interest to have this taken care of now. We are looking at March 31st for admittance to the transplant floor, followed with 7 days of high-dose chemo, and April 9th as her transplant date.
Kara had her EKG/Echo today, and we found out she has 1(tentative) negative VRE culture (tomorrow will be 1 week exactly that we have to wait for it to be a definite negative culture.) She has to have 2 more negative cultures, in the next 2 weeks, before she can be released from isolation. If her admittance date stays the same, she still has time to get out of isolation before being admitted. This would be wonderful news, meaning she wouldn't be confined to her room the whole time we are in-patient. Please keep praying for Kara, Brooklyn, and Bro. Danny Parsley & his wife, Brenda. We love you all! Thank you, guys, so much!
Megan
18 March 2008, 7:22pm EST
This update shouldn't be too long tonight. Kara had her teeth checked, and she went from Oct. 2007 having ZERO cavities, to having the start of decay, calling for 6 stainless steel crowns! The dental assistant asked the dentist if it could wait 1 year, he replied, "No, by then 3 teeth would be abscessed." She is to brush at morning and night, and then after normal toothpaste at night, use a flouride gel, also. She is to use this for "forever" to help strengthen the enamel. They will probably sedate her and fix all the teeth at once. They normally do this on Thursdays, but this week the schedule is full. They will see what they can do. They like to fix any problems like this before going to transplant.
We thought about visiting the zoo, since it was warm & we wouldn't be in a lot of direct close contact with people (more chance of catching a bug or virus of some sort!) , but changed our minds after seeing how windy it was outside! We didn't think having Kara out in that (with fluid already previously in her ear), would help her any, either! So, we grabbed a bite to eat, and ended up at the airport. The girls love the jets. There are so many in the Memphis area. This city is the FedEx distribution capitol, I think. Anyway, we grabbed some candy in the gift shop, and went up to the upper level to let the girls watch the jets fly off the runway. As we were leaving the airport, there was a FedEx jet on the runway real close to our car. You know they always look bigger when you're closer to them. Well, Lauren said, "We could fit all our children in there!" Amen, Lauren! We thought it was cute! Right now, the girls are playing together at the Grizzly House.
Please keep our family in your prayers tonight, along with a friend of ours, Danny Parsley & his wife, Brenda, and also remember Brooklyn Durham.
God Bless & good night ....
Megan
17 March 2008, 8:44pm EST
HAPPY 10th BIRTHDAY, ERICA! WE LOVE YOU!
Please pray for Brooklyn Durham.
This family really needs our prayers, too!
Kara had a kidney function test today. They can base her chemo doses from
this test. She also had a breathing test. I think she actually enjoyed this -
she had to blow into a tube, while they pinched her nose. There was a clown on
a computer screen that she had to make larger with her breaths, then she had
to see how many birthday candles she could blow out, and there was a rooster
she had to make move across the screen by blowing. Most tests are boring, this
was fun for a change! :)
She had her labs drawn, also. They are pretty good. :)
ANC 1100
WBC 2.2
Hemoglobin 10.4
Platelets 409
Today, we also met with the radiation department for our first clinical visit.
This was to familiarize ourselves with what to expect for Kara's after-transplant
radiation treatments. We were glad to see Kara's former D clinic nurse, Nicole,
who moved from D clinic to the radiation department. She will be Kara's nurse
again when it's time for radiation. We met Kara's radiation doctor, Dr. Pai,
who was very nice and informative. They also answered some questions we had.
Our last appointment of the day was with Dr. Furman, Kara's oncologist. He sat
down, was laid-back, and was easy to talk to about our concerns and he helped
to explain some things to us.
RESULTS: a little improvement from last scans
Tony said, that Dr. Furman said, "She's no where near where we'd like her
to be". Dr. Furman said that we could continue with chemotherapy like we have
been, but if she's going to go to transplant, now is the time. If we continue
chemotherapy, she may not have the chance to go to transplant. Her bone marrow
is tired. We hope that high-dose chemo will be effective against her cancer.
He mentioned how good she acts. He said if we were to do nothing, this wouldn't
last. We questioned surgery again, and Dr. Furman doesn't think the risk of
infection is worth a 2nd surgery. After transplant, there will be another MIBG
scan. Dr. Furman felt like Dr. Pai would have a big decision to make. Doctor
Furman compared it to "total body radiation" if they were to radiate all the
places, and he said they couldn't do that. We also found out today from
talking with both Dr. Furman & Dr. Pai, that radiation can damage your bone
marrow. We asked Dr. Furman if there was a chance that Lauren's healthy marrow
might "attack" Kara's cancer that remains. He talked like no, because it is
identical, and there wouldn't be the graft vs. host effect that would be
needed to do that. The plus side in it being identical marrow, is we won't
have the possible host vs. graft issues/complications that can occur from a
non-identical donor. It will be recognized like Kara's own, and we know that
we will not be putting more cancer in her body with using Lauren's marrow. He
said there isn't 100 cases like hers, that we could reflect on. He compared it
to being "unchartered waters." If need be, later on, there is an antibody
therapy Dr. Furman mentioned. Also, there is a couple oral chemo methods to
use. One is Vitamin A, Accutane, and the other is a pill form of the chemotherapy
drug, Topotecan. He said Topotecan is used on recurrent tumors. We also know it
showed effectiveness with Kara.
Even though this isn't the greatest news, we still have the assurance that
God is with us, He has been with us, He understands us like only He can, and
we need to trust Him completely. He knows what's ahead, and He knows what's
best. You know, this week I've wrote down some things that I wanted to post
about how God's helped Kara. I wanted to share them. She has escaped the flu
bug, we've been at Children's Hospital twice when the flu was circulating, and
been around 2 people directly who had strep while we were at home, and she
isn't showing signs of strep. She hasn't vomited in months from chemotherapy.
He's really helped her a long the way. We love Him so much.
Here's the chorus to a song I like:
I know the Master of the Wind,
I know the Maker of the rain,
He can calm the storm, make the sun shine again,
I know the Master of the Wind.
Tony's keeps saying since Kara's been diagnosed, "God likes to move when
nothing else will." (Which is also part of another song.)
"FACTS ARE NO MATCH FOR FAITH !"
I thought I'd quote a long-time friend of ours, Joan Kegley
(Thank you, Joan, for this encouragement !)
Please Keep Kara in your prayers - Thank You, Guys!
Megan
15 March 2008, 11:15pm EST
One exciting thing that I forgot to add to yesterday's update was that I spoke
with the "Make-A-Wish" representative. She let us know that Kara is eligible,
they received the doctor's referral and we are to contact her when we are
ready for a visit from them. Another thing that I wanted to let everyone know,
is that when Kara is admitted to the transplant floor, they do a "count-down"
until transplant day. DAY 0 is the day of transplant. I think this is how it
will be. If it changes, I'll let you know.
Saturday, March 22nd: Admittance to 4th Floor - Hooked to I.V. fluids
Sunday, March 23rd: Day -8 (Start High-Dose Chemo)
Monday, March 24th: Day -7 (High Dose Chemo)
Tuesday, March 25th: Day -6 (High Dose Chemo)
Wednesday, March 26th: Day -5 (High Dose Chemo)
Thursday, March 27th: Day -4 (High Dose Chemo)
Friday, March 28th: Day -3 (High Dose Chemo)
Saturday, March 29th: Day -2 (High Dose Chemo)
Sunday, March 30th: Day -1 (Day of Rest)
Monday, March 31st: Day 0 (Transplant Day !)
Both my mom & my mother-in-law have referenced the connection of Easter
falling on the 23rd of March this year & it co-inciding with Kara's transplant.
We've had a lot of significant dates over the past 10 months. It was my
birthday that Kara was diagnosed. Her surgery fell on a real good friend of
mine's birthday, Kara was admitted for chemo on our 11th wedding anniversary,
at Thanksgiving we were at the Ronald McDonald House sharing a meal with a
fellow Neuroblastoma family, On Christmas, we were in-patient and able to have
all 4 children together with us, and this year, on Easter, we will be at a new
milestone in Kara's treatment. God has been with us through it all, and we
can reflect and see His hand of mercy, grace, and blessing on our lives. I can
trust that as we reflect on the meaning of Easter, the power of the resurrection
of our Lord & Savior, Jesus, that He is alive & well, and still all-powerful
and able to completely deliver Kara from this disease. Jesus' purpose on this
Earth was to be the ultimate, sinless sacrifice for our sins, and in-turn,
reconcile a fallen world back to God. It's through Jesus that we can experience
true joy, and peace in the midst of trials. You can be a "born-again" Christian
and experience "new life" and salvation by asking Jesus into your heart, acknowledging
that He took our place on the cross of Calvary and paid the price for our sins
(we were all born sinners), and asking Jesus for forgiveness of your sins.
It's through Jesus that we can turn from our sins and live a new, clean, saved
from sin life. The stripes Jesus bore was for our healing. By His shed blood
and His resurrection power, we can be forgiven, delivered, and healed. He is
the one who can solve every problem that we face and He really cares! He loves
us so much that He gave His life for us, so that we can one day be with Him
throughout eternity in heavenly paradise.
Isaiah 53:
v3: He is despised and rejected of men; a man of sorrows, and acquainted with grief; and we hid as it were our faces from him; he was despised. and we esteemed him not.
v4: Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted.
v5: But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.
(What I love about verse 5 is that it says we ARE healed (present-tense) :)
Matthew 28:
v1: In the end of the sabbath, as it began to dawn toward the first day of the week, came Mary Magdalene and the other Mary to see the sepulchre.
v2: And, behold, there was a great earthquake: for the angel of the Lord descended from heaven, and came and rolled back the stone from the door, and sat upon it.
v3: His countenance was like lightning, and his raiment white as snow:
v4: And for fear of him the keepers did shake, and became as dead men.
v5: And the angel answered and said unto the women, Fear not ye: for I know that ye seek Jesus, which was crucified.
v6: He is not here: for his is risen, as he said. Come, see the place where the Lord lay.
v7: And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you.
v8: And they departed quickly from the sepulchre with fear and great joy: and did run to bring his disciples word.
v9: And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him.
God gave Kara an identical twin, Lauren, and she will receive Lauren's healthy
bone marrow soon, not far past the Easter holiday. I am so thankful, and would
like to think of the transplant as representing and being "new life" for Kara
physically. I am thankful that my mom & mother-in-law mentioned the connection
of Easter, new life, and the resurrection power and that Jesus can raise up
Kara with Him! Let's give God all the glory He deserves, thanking & praising
Him for all He has done already, and all that He is going to do!
We love you all,
Megan
14 March 2008, 11:25pm EST
Well, we are back in Memphis now! We got in town Wednesday evening, and Kara had an early appointment for Thursday. She and Lauren had labs drawn, and Kara had some tests,scans and x-rays. They did have to poke her a couple times yesterday, and today, because if they drew some of her labs through her line they would be getting blood thinner also, and they didn't want that. She and Lauren have ended up with a good collection of toys already! We know at transplant that they don't want to poke her unless absolutely necessary, due to the risk of infection. NO MORE G-SHOTS! YAY!
Lauren is still cleared so far for transplant. Hopefully nothing changes! She will not need to be seen again until March 28th. We started giving her a multi-vitamin with iron.
Kara has had some congestion and runny nose. We are hoping this is may be her sinuses, or the atmosphere, and not viral. Her right ear yesterday in clinic was showing a little bit of fluid, and today during her hearing evaluation, her right eardrum was moving good, so maybe it's just a little bit of thin, clear fluid. Her left eardrum wasn't moving as well as her right & she compared it to the feeling of your ear needing to "pop" . So, hopefully this won't turn into an ear infection. She said to watch her for tugging at her ears and for fever, & call her clinic if this happens. We have GREAT NEWS to report with her hearing test! On her last exam her test results showed some hearing loss in her right ear, in the highest 2 levels of frequency. Today, in her right ear, she was showing some hearing loss in the highest level of frequency ONLY, and the 2nd level where she showed some hearing loss before, was testing NORMAL! The lady who did her exam today said she tested it over and over. So, needless to say, we are so happy for this news! Praise the Lord! Her eye exam went well, and she is doing fine in that area.
We met yesterday with her bone marrow transplant doctor, and she told us that Kara has a small amount of residual disease in her bone marrow. I questioned Tony whether she said, VERYsmall amount, or SMALL amount, and he couldn't remember, but anyway, her bone marrow IS BETTER than what it was. She also told us her MIBG scan showed STABLE in comparison to her last scan. This may have been a misunderstanding on our part when we were told the results on Friday, March 7th. We were under the impression that everything was better. But stable is definitely not growth! We have an appointment with her oncologist on Monday, March 17th, and he is going to go over everything with us then. (He was out of town in our clinic visit yesterday so we couldn't talk to him about last week's scans and tests results.) We know God is in control and we are encouraged in Him. He's helping Kara and our family and has been SO good to us all. (By the way, it was good to be in church again Sunday night!) We are thankful for our church family, and I'm glad my friend, Karen could be there with us, too!
Her transplant doctor went over transplant information with us. Kara will be admitted and hooked up to I.V. fluids on Saturday, March 22nd. On Sunday, March 23rd (EASTER) she will start high dose chemotherapy. There is one drug she hasn't had before that she will be getting. It can cause mucositis (mouth sores). This is what causes the pain during transplant. There is a possibility that she will need pain medicine and not be able to eat. If she can't eat, she will be given nourishment (TPN) through her I.V. Please be in prayer for Kara! This isn't unusual, and there's a possibility that she may even be discharged on TPN. She will have high dose chemo for 7 days, have a day of rest, and then the next day, Lauren will have her outpatient procedure where they will remove as much bone marrow as they can that is a safe amount for her. Later that day, they will infuse Lauren's bone marrow into Kara's central line. Kara's body will recognize it as her "own" marrow, and then we wait. It may take up to 3-4 weeks for Kara's body to start making it's own cells from Lauren's marrow. This is called "engraftment". But, our hopes are that Kara's immunity will return faster once she does engraft. Please help us pray she engrafts sooner than 3-4 weeks. We know there are always risks involved, but with God by our side, we are looking for a great outcome to all of this. It's like Tony said, He didn't give Kara an identical twin for nothing! :) Well, I've said enough for tonight, but I really wanted to post and keep you all up to date. We love you all, and appreciate you! God bless.....
Megan
11 March 2008, 6:56pm EST
Not too much to report....All is going well. Megan took Kara to Children's
hospital in Knoxville yesterday to get blood work done. As of this afternoon
St Jude still doesn't have the results yet. One of the clinic nurses is
concerned, they need to know if Kara will be needing blood or not. We'd like
to know about her counts too. It seems that there were children with the flu
at Children's when Kara was there. The nurse said "Don't touch anything"!!!
Megan stopped at the Dandridge Elementary school and there were kids in the
nurses office with fevers. They said "Don't go near there". Hopefully they
didn't get directly exposed to anything, it's so hard to keep them away from
germs. We had an early Easter Egg Hunt at Mamaw & Papaw Lee's yesterday after
school & work. It was fun and the kids found lots & lots of eggs with candy &
money in them. Kara was getting very impatient waiting for everyone to get
there, she could hardly wait.
They got a phone call from the transplant department. They have them scheduled
for admittance on the 22nd. Just eleven days from today. Kara will need to
see a dentist, and an ear, nose, and throat doctor before then. They need to
fix any cavities or problems of any kind before transplant. One very good
thing that Kara can be thankful for....no more pokies!!! She's had her last
G shot, and they don't want to poke her because of risk of infection. She'll
get all her med's given to her in her direct line, or "Buddy" as she calls it.
We're thankful to be going forward, but it's scary, not knowing exactly how
things will go. We're concerned for both the girls. We know the good Lord is
right there with them, and this is a what is helping us, and His grace will be
sufficient to keep us. He's kept us this far and He will carry us all the
way.
Megan & Tony and the twins will be leaving tomorrow to go back to St Jude. The
usual time for transplant is a month in the hospital, so they won't be coming
home anytime soon. I'll give you their new Grizzly House room # ASAP.
Pray for us, and it's so good to read the encouraging words. I think that you
all get as excited as we do when we have great news. You are such a good
support group for us. God bless you!!!
Mamaw Mary
8 March 2008, 1:15pm EST
Hi everyone! This is Mamaw Mary today. Megan has been enjoying doing the
updates, but their home computer is acting up, so she wanted me to fill
everyone in one the latest GOOD NEWS for Kara!
They made it home yesterday safe and sound. We decorated the house with
balloons and crepe paper to welcome them home. They left St Jude right after
she had her MIBG scan and Sandy, the nurse practitioner, called Tony on their
way home to tell him that Dr Furman had been in meetings most of the morning
with the radiology and transplant departments. The decision is to go ahead
with transplant. She said the bone morrow wasn't completely clear, but it
was better. The MIBG scan showed just a few little places that glowed, this
was better too. We had prayed for NED (no evidence of disease), but this is
almost as good. The transplant department said she's ready now and it's time
for transplant. So, here we go, this is what they've been conditioning her
body for since June 2007. She'll get high doses of all the same chemo's that
she's had so far and it'll destroy what is left of her bone morrow. Then
they'll inject Lauren's clean and pure bone morrow stem cells into Kara.
It'll be rough on Kara, but she'll have constant care during this time, they
know what they're doing and lets' pray the good Lord will continue to be at
her side guiding the way to complete healing.
We are going to Mamaw & Papaw Lee's today and have a family get together, we
have about 1/2" of snow on the ground. We may get as much as an inch!!! We
better drive Papaw's 4 wheel drive truck when we go out. :o) Yesterday it was
60 degrees, now it's 37 outside. What a change huh?
They have to be back to St Jude on Wednesday. They need to get blood work
done and sent to St Jude while they're here. We'll post more later and keep
you posted of our journey.
God bless, and please be careful, those of you who are getting all the snow. Stay home and enjoy the peace. Sis Mary
6 March 2008, 10:32pm EST
All Kara had scheduled for today was her nuclear medicine injection into her central line. This will cause the neuroblastoma to glow on her MIBG scan tomorrow. Kara's scheduled for sedation from 8:30 - 9:30 a.m., MIBG scan from 9:30 - 11:30, and sedation recovery from 11:30 - 12:30 on Friday, 7th. We plan on heading home to Dandridge after we're through. As of today at 2:00 p.m., Kara's bone marrow biopsy results weren't back yet. I will post the results after we hear something from the doctors. Tony talked like he may load the car & truck tonight, that way that won't have to take care of that tomorrow. We'll get in tomorrow night sometime. I probably won't post tomorrow, it will be a very busy day. Tony's oldest brother, Gary, his wife, Judy, and their daughter, Candace will be traveling to Dandridge tomorrow also. We've heard that it's supposed to snow, so pray for all of us as we travel. There's a friend of ours who is also needing prayer, Bro! . Danny Parsley.. We'd appreciate your prayers for him, and Brooklyn Durham. Please be in prayer for Kara and the results we'll be receiving, and that the doctors make the right decisions for her treatment plan. Thank you for your continued prayers, and messages. We love you guys!
God bless & have a great Friday .......
5 March 2008, 10:58pm EST
Well, we made it to Kara's CT scan today. Once the scan started, it was no time before we were on our way. Kara was thirsty & hungry today, but thankfully she was able to drink apple juice with her contrast to help hold her over until after the scan. Afterwards, we went out to try a new place for supper - a pancake house! That wasn't what Tony had in mind for supper, but the girls enjoyed it! They want to return again, but I'd say if it's anytime in the near future, they'll have to wait until dad's not around! Afterwards, we ran in Walmart, and the girls spent their money on a bath-time Dora doll. We are back here at the Grizzly House, and the girls are playing. We'll probably check-in earlier tonight. Last night we were on a late schedule, and I noticed Kara had redness below where her bandages were. She wasn't fevering, but I was supposed to call the hospital if I noticed redness, or swelling. The on-call doctor looked at it, and said it was definitely a reaction to the bandage. They took her vitals, and covered her with a couple bandaids, and we were on our way. Please keep praying for her and all the other children & families that are fighting this disease! God bless & good night.......
Meg
4 March 2008, 6:24pm EST
Today has been a good day. We planned on letting Kara sleep late today so she
wouldn't have to endure a long day without eating before her biopsy. Tony woke
her up after we found out she could go on over to the hospital and they would
work her biopsy in earlier. When I picked up Kara's schedule yesterday, the
scheduler told us to call the clinic this morning to see if they wanted to
keep her biopsy at 3:00. (It was scheduled for the last appointment of the day
due to her being in isolation.) I thought that was great that they would work
her in so she wouldn't have to go so long without eating. The nurse she had
last week that tried to draw her blood and it wouldn't flow, brought the girls
in 2 large green frog balloons while we waited. I was able to get a picture of
them with the balloons. I'll have to send it to be posted! She was calling
procedures about every 15 minutes to see if they were ready for Kara to go
back. She was only awake 2 hours before she was sedated at 12:30. The biopsy
lasted about an hour, and she woke up in a great mood. I always remind the
anestesiologist team that she uses Ketamine with her sedation medicine, (
otherwise she wakes up angry and wanting to throw things!) I'm so glad Dr.
Berazi tried this - we've been using it ever since! :) Her clinic nurse
practitioner, Sandy, performed her biopsy today. Tony ran into her afterwards
and she said it went real well and they were able to get a good sample. During
recovery, they gave her cookies, crackers, & apple juice. When we returned to
the Grizzly House, she continued to eat! :) She & Lauren have been together
playing here. Tony said you wouldn't even know she had anything done today. I
did ask Sandy if her C-Diff bacteria could have been caused from the
antibiotics she was on. (I had heard that before) She said yes. She talked
like if she eats bananas and yogurt that would help too. We bought some yogurt
at the store last night, so she's been eating some of that, along with taking
the flagyl to treat it. Tomorrow is her CT Scan. She can eat & drink up until
11:15 tomorrow morning. Then, she has to take a contrast at specific times
before the scan. The scan will be at 3:15. She will not need to be sedated for
this because she is able to lay still (it's a short scan) while it's being
performed.. Kara shouldn't have a rough week with the fasting, because
tomorrow when I thought she couldn't eat or drink for 4 hours, I found out she
will be drinking something during that time with her contrast, and then her
scan on Friday is earlier in the day, which really helps! Thank you for all
the prayers for Kara and our family, and the messages & encouragement, too! We
appreciate you! Please continue to pray for excellent results. (I am so glad
we don't have to wait to have these tests done later!)
Have a great night & God bless ......
Megan
3 March 2008, 7:21pm EST
We got a surprise today in clinic! Kara's ANC was a lot higher than we expected! She was able to stop her G-CSF shots that causes this number to raise. If she is able to proceed with transplant, last night was the last of those shots - hopefully she never will have to have those ever again! The only way she'll ever need another one, is if she has to have more regular chemotherapy. With her high-dose chemotherapy at transplant, the G-CSF will be given to her through her central line. YAY!
ANC: 7,800
White Blood Cells: 8.4
Hemoglobin: 9.6
Platelets: 61 (61,000)
If you remember, her last chemo treatment was reduced because her ANC wasn't very high. So, evidently, with a reduced dose, it has allowed Kara's body to recover quicker. Since her platelets were over 50,000, this also opened up the option that her bone marrow biopsy/aspirate could be performed as early as tomorrow. We were given some options to consider, and yes, we could be on the road right now headed home, but we opted to stay here this week and get all of her scans and her biopsy performed this week. Even though we will be staying here for scans, Dr. Furman said we could still go home after her MIBG scan on Friday. We will return to St. Jude sometime next week (week of March 10th, but not sure of the exact day.) When we return, we will talk about Kara's test results and see if she's ready for transplant, or if they feel she should continue with more chemotherapy. We are hoping her scans show great news and she is at the point to go ahead with transplant! I really don't think any of us expected her counts to recover this soon. Dr. Furman checked to make sure we could move up her MIBG scan (this scan causes Neuroblastoma to glow). Everything worked out, and here's the majority of her schedule this week:
Tuesday, March 4th @ 3:00 p.m.: Bone Marrow Biopsy / Aspirate
Wednesday, March 5th @ 3:00 p.m.: CT Scan of: Abdomen / Chest / Pelvis
Thursday, March 6th @ 2:00 p.m.: MIBG Injection into her central line (glow medicine)
Friday, March 7th @ 8:30 a.m.: MIBG Scan
Hopefully Kara will do okay, because she has to be sedated on Tuesday & Friday. This means that she can't eat anything in the 8 hours before she's sedated. She is allowed to have clear liquids up to 2 hours beforehand. She doesn't have to be sedated for her CT scan on Wednesday, but she can't eat or drink anything for the 4 hours before her scan. She is allowed to have some water if she has to take medicine beforehand.
We have to try and keep Kara from being constipated, as the tear they found last week could take a while to heal. We also we found out that she is positive for C-Diff. It's a type of bacteria. We started her on Flagyl today to treat that.
We are thankful that she is acting & feeling good and that the raise in her blood counts is allowing us to move ahead quicker than we expected. This is a blessing! Please remember her upcoming scans and biopsy and that they show awesome results!
Thank you for checking in & praying ! God is so good! Have a great night & God bless .......
2 March 2008, 1:20pm EST
Kara had a great day yesterday! Her ANC jumped up to 500. She was taken off of the senna (laxative) and also the broad range antibiotic. They ended up giving her a platelet transfusion yesterday. Wednesday p.m. she was given platelets too, but it wasn't a lot, and by yesterday she was needing more. We don't expect her to need anymore blood or platelet transfusions now. Nothing grew on her cultures, and her fever never returned! We were discharged yesterday afternoon. It was a beautiful day, sunny, 63*. We let the girls take their strollers and a couple stuffed animals over to Mud Island. They walked around in the grass, tried to throw sticks in the Mississippi River, but, of course, couldn't reach that far! They had the best time! A lot of other people had the same idea, it was just so nice out. We saw a couple that had 2 little pet monkeys. They were wearing t-shirts and diapers. They were really cute. One was drinking out of a sippy cup! I really thought that the girls would be fascinated by the monkeys. They thought they were neat, but really had the most fun gathering sticks, and playing around. We ate supper at the mall, which followed with their favorite sugar cookies. We really had a good day.
Kara will be seen again in clinic on Monday, March 3rd. We expect to be on our way to Dandridge Monday afternoon. If she's released to go home, we will have to return on Sunday, March 9th. She has no reason to stick around this week. Her next step is scans on the 10th, 12th, and her bone marrow biopsy on the 17th. We're hoping this is the last few doses of the G-CSF shots that she has to receive, and that she will be ready for high-dose chemo, and transplant. Please pray for clear scans! Kara woke up feeling good again today. She's happy & feeling great! The girls are playing together right now. We're going to enjoy the day together again today, and I will update more on Monday, 3rd after talking to Dr. Furman. Thank you so much for all the encouraging messages, and prayers. God has really blessed us. Have a great Sunday! God Bless!
Megan :)
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