Well, we were discharged around 3 yesterday. The BMT floor nurses sang the notorious departure song, and threw confetti at Kara. They gave her a quilt, and a "No Mo Chemo" t-shirt. Today, child life presented her with a bouquet of balloons, and another t-shirt (that I love!). It says:

"BONE MARROW TRANSPLANT"
"EXTREME MAKEOVER"
"ST. JUDE STYLE"

Overall, Kara's doing good. She continues to try bites of food. They want to cycle her down on her TPN. Tonight we'll program her bag of nutrition to run over 16 hours. Hopefully, with less nutrition in a bag, she will be hungry for more real food! She has been averaging a nap a day. She is still on numerous med's. Two of them she will probably be on for a month. She is still being weaned off of her steroids. :)

Today, after her labs were drawn, we were talking to her N. Practicioner and it looks like she is starting to hold onto more platelets than what she was. This is great to hear! She didn't drop into the critical range. She was at 20,000. They did give her another transfusion today, and they premedicated her with tylenol before-hand so she wouldn't have a reaction. We are hoping that tomorrow's ANC will also hold, or be higher than today. It was still good, at 1000.

Kara's Physical Therapist visited today. She said she has to confirm this, but thinks Kara will need P.T. only about 3 days/week now, instead of 5, since she's outpatient, and will naturally get more work in since she isn't confined to 1 room anymore. Kara had a better day with p.t. today.

We did run a couple errands, but Kara didn't go inside anywhere. The beautiful sun was shining, and it was about 70*. She was smiling, and happy. It was good to see her this way! She talked to Brent on the phone for a little bit, too. We are planning on visiting with them this weekend. The weather is supposed to be great. We may have to have 1 big celebration between all the B-Days, and her discharge/end of i.v. chemotherapy!

Hopefully, we will have another pretty smooth day again tomorrow. Please pray she fully engrafts, and that she doesn't run any fevers - that would mean in-patient again! Thank you for all the prayers, and remember all the people out there battling illnesses!

God Bless,
Megan :)

26 April 2008, 12:09pm
+19 Days Post Transplant
ANC = 700
Platelets = CRITICAL @ 9,000

The fact that Kara didn't react to her platelet transfusion yesterday is a blessing, because at the rate she's going, it looks like she'll be getting her fair share of them!
Until she fully engrafts, her body can't keep up it's supply of platelets on it's own. Most kids receive around 3 transfusions a week, while some kids require daily transfusions. It looks like Kara will fall into this category!

With her ANC being at 700, they are going to give her another dose of G-CSF to boost her immunity. She may need this periodically, until she fully engrafts. We are hoping since timewise, she's farther out on the engraftment syndrome, that she won't spike a fever with this dose. If she would, we will have to be in-patient for a little bit longer, just to make sure everything's okay. If everything goes good with the G-CSF infusion, we will be moving out of the RMH this weekend, and into an isolation room at the Memphis Grizzly House. They were talking about moving us into the Target House apartments if they had an isolation apartment available. Isolation rooms are a big demand around here! A lot of kids are positive with VRE. We will be in isolation for at least another 3 weeks. The VRE test is once a week, for three weeks. You have to have 3 negatives in a row to be released from isolation. If you get a negative i n that time period, you have to start all over from square one.

One thing we were reading on the discharge rules, is that Kara isn't supposed to leave St. Jude housing/premises. They don't want her to go to public places yet, or be around anyone sick, and she needs to wear her mask at certain times. This is for precaution, so Kara isn't exposed to something that could make her sick. Her immune system isn't fully recovered yet. So, until the Dr.'s say so, this is what we need to abide by.

They are doing away with Kara's pain pump altogether, and they have discontinued her i.v. antibiotics, since the fevers seem to be just from the platelet reactions she was having. She is doing good!

Tony talked to his mom this a.m., and they were headed to Monticello, Ky to visit his Mamaw Gert. They were taking Erica, Brent, & Lauren, too. Tony wasn't sure who all they had with them! Tony could hear the kids in the background, and they sounded excited! I'm sure they will have a good visit. I know one thing, when we get back home, we sure do have a lot of catching up & visiting to do! With spring here, it makes us more anxious to be out & going! Patience, Patience... :] We'll have time, we just have to focus right now on getting Kara well! We have met a lot of great people here at St. Jude. Kara had me in tears last night. She was pretty weepy yesterday afternoon, and last night she was hugging her nightshift nurse good-bye, and when she left Kara started crying, thinking she would be going to the Chili Building, and not seeing her/some of her nurses again. I told her that we may not even make it to the Chili Buil ding, we may be outside, and at the Grizzly House. Well, she liked this idea. Then I asked her if she'll miss her nurses, and she said, "Yes, I'll miss my nurses I had tonight." They have all been really good to her here. The kids come first, definitely. This is a special place, and definitely worth supporting!

I hope you all have a great weekend - enjoy God's blessings that He gives daily!
Love you all,
Megan :]

25 April 2008
Update #2 9:15pm

Well, Kara had her platelet transfusion after they were washed, and put in saline. She was pre-medicated with tylenol, and also had benedryl in her system, and NO REACTION ! PRAISE THE LORD ! If everything stays the way it's going, then we'll be out of here on Sunday ! YAY! :]
Evidently, she was reacting to the extra stuff that are in the platelets. The testing did not show that Kara developed an antibody against platelets. Can you believe it? She never had a reaction to a blood product before all of this! Kara was on so many medicines, (even steroids can mask things), so they started eliminating the ones that other kids have had reactions to. Now, hindsight, we can see that this could have been what she was reacting to all along! I'm just glad that the problem seems to be fixed, and we can go on!
Right now, they only pain medicine she'll be getting is the boost. She doesn't have any running continually anymore. She has already started taking one of her antibiotics orally. They have been working on getting her medicines lined out for discharge. The Clinical Nurse Specialist gave me a paper today stating the discharge rules after transplant. The guidelines are precautionary, for her health and safety. Some things she did as inpatient, they want her to continue doing. She will still be in the transplant clinic's care for a little bit, maybe a week (?), and they tell us to expect to return to clinic every day for the first days after discharge. This is okay, we will be out, right?!
I know Kara so ready to get out. She has been stressed very easily today, ever since we tried getting her to take part in P.Therapy. She also had to have a respiratory virus test, (because she has had a little bit of a runny nose) which is NO FUN! They had to stick a little rubber tube in Kara's nose, (she said she felt it in her throat) insert some sort of solution or water, and suck it out, for testing. Gross, I know, and Kara hates it! But, afterwards, she was given a painting book that she can personalize, and a coloring/sticker book, and a felt poster/marker set. I'm not sure if the moodiness is from being weary with being in here, a side effect of weaning her off of medicine, or being on a certain medicine, because she acted like this last night after she was given a certain medicine.
Kara was asking for steak again tonight. She didn't eat as much as last night, but she did eat some of it!
Kara's nurse brought Kara a jumbo stick of chapstick today. Kara made her a yellow heart, wrote her nurse's name on top, put a sticker on it, and drew a face, and scribbled on it, saying it said, "I love you, Kara." She is very particular. It took 6 pieces of construction paper before Kara was satisfied with how the heart looked! She says she wants to be a nurse when she grows up. I think she'll make a good one!

Well, I wanted to update letting you know how the rest of the day went!

I'll see if I can update tomorrow.
God bless,
Megan :]

***************************************************************
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Update #1 11:00am EST
+18 Days Post-Transplant
ANC = 1100

Kara did have another reaction last night to the platelets. Her fever returned, and she had a purplish colored rash, (like when you have poor circulation). She was given tylenol, the fever left, and the rash disappeared quickly.

So, it seems that the culprit is the platelets, even though so far on her bloodwork that they drew before & after her transfusion isn't telling us that she has developed an antibody to the transfusions.

Her platelet count after last night's transfusion jumped up to 41,000 and this morning's labs show her platelet count at 15,000, meaning she needs another platelet transfusion today. They are going to have the platelets washed, which will get rid of most of the plasma, and replace it with a saline solution. She will be pre-medicated with tylenol before the transfusion. Also, her sweet nurse, Amy, is going to time the transfusion with her benedryl that she gets as a pre-med before her antibiotic that she's allergic to. (She is a sensitive kid!) If this works, she will recommend using benedryl with her future platelet transfusions. Her engraftment syndrome is under control. Her chemistry's are overall looking pretty good. They are switching her over to oral steroids (we're still in the weaning process). They are either weaning her off of more of her continuous pain pump medicine, or taking her off of it today, and then let her keep the boost button if she needs it. If she doesn't fever, and she's doing good, then we can get discharged possible Sunday afternoon, or Monday sometime! :)

Please pray that the changes they make with her platelets work, and this can be resolved so we know what she needs in the future, and that we can get outa here! Maybe we won't even get the privilege of being in-patient in the new Chili Care Center! :) :) :) :) :) :) :)

Thanks for the prayers, and encouraging messages - we enjoy hearing from you! Have a great Friday!
God Bless, Megan :]

24 April 2008, 10:18pm EST

HAPPY BIRTHDAY, TONY !!!! WE LOVE YOU !!!

This morning, Kara ran a fever again, and it was after her platelet transfusion. It was high enough that they gave her tylenol to keep her comfortable. She hasn't had a fever anymore today, but she is getting a 2nd platelet transfusion right now. We will see how this goes. I won't be surprised if she runs another fever when her platelets are through being infused.

They aren't sure exactly why Kara keeps spiking a fever. They have some possible reasons:

1.) Infection - but doubtful, since her inflammation marker on her bloodwork keeps dropping.
2.) Engraftment Syndrome - We were told this lasts 7-10 days. Today is day #9.
3.) Sensitivity to Platelets - This is what they are checking into. She isn't holding onto the platelets after her transfusions like she should be. She also has been having some symptoms that make them suspect this to be the reason. We don't have any answers yet. They are checking her blood around the time of, or after, the infusion. If this is the reason, there a couple things they can do (like washing platelets or getting the platelets to be a closer match for her body) for future transfusions. Platelets are the last of the blood cells to recover, so pray that she fully engrafts soon, or that they get this all figured out so her fevers will stop. I didn't talk to the Dr. or N. Practitioner today, so I'm not sure if this was the reason for all the reactions she was having the past week or two. We have noticed in the past few days that things have happened right around platelet transfusion time. Hopefully, we can get this resolved before long!

We are hearing that the transplant floor is supposed to be moving to the new Chili Care Center on Monday, April 28th. We may get to spend a day or two in the new building - we'll see how it goes!

Kara's continuous fentynl pain pump rate has been decreased again today. Her steroids also have been decreased, and she is taking her multivitamin by mouth, too. She was asking Tony for steak today, so he went to O'Charley's (big surprise, huh?!) and ordered her a fresh well-done sirloin. She ate about 10 bites, (even though they were tiny), and scooped some icing off of a cupcake. We had to celebrate Tony's birthday, even though he says it's just another day! Two days ago, Kara saw on the calendar that it said 22. Her face lit up, she smiled, and said, "It's my Birthday, isn't it?!" She & Lauren love Birthdays, (what kid doesn't, though, huh?!) So, it was good to celebrate, even though it would have been nice to celebrate with the rest of our family!

God has really been good to us this year, and we are thankful for all the blessings He's given us. Well, Kara's platelets are finished, so I'm going to check on Kara.

God Bless,
Megan : ]

23 April 2008, 8:32pm EST
+16 Days Post Transplant
ANC = 500

Kara is considered 'Neutropenic' at 500, which means she's at a greater risk for infection. The Dr. today ordered her a 1/2 dose of G-CSF to up her blood counts, and we're to watch and see how she reacts. Hopefully, since she's had this already, her counts are higher than this!

She's definitely not typical. Yesterday, she had 3-4 little tiny bumps that looked like bug bites come up and itched, and before long they were gone. Then, she had a fever that appeared, and probably within 45 minutes, it was gone on it's own. Today, she also started running a fever for just a short amount of time, her cheeks got a little puffy, then her cheeks looked better, and now she's not running a fever anymore. (They have drawn blood cultures on both occasions.) A day or two before this, she had a little blister pop up on the top of her ear, and the next day it was gone, and now she has discoloration where the blister was. ????? Her nurse said today, that her goal for Friday is to get through her shift without Kara spiking a fever! I'll amen that one!

On a good note, she has only had to have 1 blood transfusion after the transplant, which was on the 14th! She had a great day in physical therapy today. She actually enjoyed herself again! Her nurse said we're starting to see some of the old Kara (when they first met her up here on the transplant floor.) She's been smiling, and talking more today. She hasn't had any diarrhea since early this a.m., no vomiting, and no tummy pain today! She even ate 2 (teeny-tiny) bites of a burrito. They have decreased her pain pump even more. They may even decrease her steroids some tomorrow. We'll have to see what the Dr. says tomorrow during rounds. They did take her off of one of her antibiotics.

Earlier today, her platelets were critically low. She has had 2 platelet transfusions today. The Dr. said that the platelets are the last out of all the blood cells to recover. About a week ago, they were keeping her platelet threshold at a safe number (50,000), to help control the bleeding she was having in her mouth. Now they have lowered the number to 20,000, and since she isn't 'fully engrafted', her body's not producing them fast enough to stay at the level they want her at. This is the reason why she's had to have so many platelet transfusions. If they were to keep giving her platelets like they were, it would cause her body to be 'lazy' about producing it's own. This way, it causes a little bit of stress on her body, and it will know it needs to make more platelets. Eventually, her body will catch up. The Dr. said usually kids stop needing transfusions around 45 days after transplant.

It doesn't look like we will be d/c out of here before the weekend rolls around. We are looking at probably the first of next week sometime. As long as she's having these fevers, we won't be leaving. They are still weaning her off of her i.v. meds also. She can't be running a fever, and she has to be able to take her medication orally before we can leave. We were told if we're discharged, and she runs a fever, we would have to come right back in.

The kids probably won't be here until next weekend because it doesn't look like Kara will be out of here yet. (You can only have so much fun in a hospital!) So, Mamaw & Papaw Lee will be bringing them next weekend. Tony talked to Erica last night about it, and she would rather come when Kara's outpatient. She likes to see everybody, but dreads the drive! Brent's such a laid-back kid. I know he likes to visit, but he has fun at home, too. Lauren has been enjoying herself this week. She went to Dandridge Elementary Monday, and she was able to play on the playground during some of the kids' recesses.

Well, I better go .......
God Bless,
Megan

21 April 2008, 8:13pm EST
+ 14 Post Transplant
Can you believe it's been 2 weeks already ?!

ANC = 700

One of the transplant doctor's came by today. He explained that it's normal for Kara's ANC to fluctuate. It won't surprise him if it falls down even more. If it goes below 500, they can give her a boost of G-CSF periodically. He said then it would jump up to around 1200. He is actually glad to see that her ANC is tapering down some. This lets him know that he can wean her off of the steroids.

About Kara's diarrhea, he explained that it's chemotherapy related, and it should last until about 10 days after engraftment. Chemo destroys tumor cells, and unfortunately good cells too, which causes some of the bad side effects.

One her output, she is showing that she's holding more in than she's putting out. But, he explained that there's unmeasurable fluids that our body releases, (Like when you breathe out fluid), so we don't have that type of losses recorded to help us get an exact figure. He said if needed, we could give her another diuretic to even her back out. He didn't seem worried about her kidneys, since we told him her output has slowed down again.

Good news: She is out of the danger zone now on the lung problems that Engraftment Syndrome can cause! He is really pleased with how she's doing. Her rash is pretty much completely gone, with minimal itching. She still is having some belly pains that we are treating with the pain booster.

She is really doing good! She did physical therapy today, and complained about her legs hurting today. It's probably just where she's not used them regularly, and needs to exercise them again! She is definitely doing a lot better than last week, which we are thankful for that! Thank you all, for every prayer said on our behalf! We are looking forward to getting discharged from the hospital hopefully this week - I know Kara will be glad to see the outdoors again! :)

We love You!
Have a great night & God bless.....
Megan :)

20 April 2008, 5:45pm EST
Day +13 Post Transplant
ANC = 900

Sorry about yesterday. I did an update, and sent it. When I went to check it this a.m., I found out it wasn't even sent to Jeff. I just did a 2nd update, and lost it, too. Hopefully this time it will work!

Yesterday, Kara's ANC held at 700. The Dr. said she is at the tail-end of the engraftment syndrome! Hallelujah! Some of her chemistry levels need to be lined out, but he expects us to be out of the hospital sometime next week. If she is unable to sustain herself nutritionally, Tony & I will be doing her TPN. We have been training on this the past 2 nights. It's in an I.V. bag, and a computerized Cadd pump is used to feed the nutrients into her central line. We won't have to add her multivitamins to her TPN, since the Dr. feels that's what was causing her reactions this past week. Some kids are allergic to it. He said not to worry, when she's able to handle it, she can eat a chewable multivitamin. They also switched her new antibiotic back over to one she was previously on, in case this was the culprit. I wish we knew for sure, but hopefully she won't need either of these again once we get past this!

Friday night, Kara's in's and out's and her fluid level was positive. (This is the night she was really sick with the mucous.) Her output really slowed down in the night, and they thought she may be "dry". They gave her a boost of i.v. fluids, and afterwards, she was swollen in her lips, eyes, and somewhat in her feet. She went 10 hours before she had any output! This isn't like her. Her weight was up Saturday morning, too. We were a little concerned about her kidneys. They gave her a diuretic, everything picked up, and everything is still working good! Her swelling & weight has went back down, too.

Yesterday, Kara was in bed with the cooling blanket and running a fever again. The doctor went back up on her steroids yesterday. She didn't run a fever all night last night, and hasn't had one all day. They have her on scheduled tylenol every 4 hours. Her rash looks wonderful compared to what it's been like. She is still itching a lot, though. We have 2 anti-itch creams, and she is allowed to have extra benedryl if she needs it. We've even caught her scratching in her sleep. There's nothing like an itch to torment you! We've been rubbing her feet to help. Tony was up last night for about 1 1/2 hours rubbing her feet!

Today, she enjoyed her bath, and felt like wearing clothes. We are going to get her up to play on the mat in a little while. She hasn't had a lot of physical activity, so hopefully we can get her moving a little bit later on. She has been sitting in our laps today. Yesterday, they gave her 2 calcium i.v. supplements, and she had a platelet transfusion again today. They have decreased her pain medicine in her Cadd pump, and tomorrow they will start to decrease her steroids. Her side effects on the steroids today haven't seemed to be real bad. I remember asking a Dr. before when she was on these, if there was a different medicine that worked the same way, but didn't have the side effects. He said no. They all work the same way, I guess. Yesterday, she didn't have any trouble with the mucuous, and today she hasn't either. Her lungs and oxygen level are great. Her tummy has been hurting her. She has been drinking some Caffeine free Mt. Dew, and wanted Apple juice, but the jui ce really hurt her belly. Her stomach hasn't had anything going through it regularly, so now that she's started to drink again, her stomach's not used to breaking stuff down, and with the mucusitis she had, she probably had sores in her stomach, and now they're starting to heal, so is the reason why it's probably hurting.

Tony called Dina to see if Lauren could stay with her this week. She is looking forward to keeping her, and I'm sure Lauren will have a lot of fun. She is really good-natured, but I'm sure she's ready for a break from the Hospital. (Mom & Dad left with her earlier today.) It seems like this past week it's been pretty unpredictable for us, and mom has been occupying Lauren, and doing our laundry, while Tony & I have been concentrating on Kara's needs. She may be worn-out by the time Friday gets here! She'll be on her way back here with Mamaw & Papaw Lee, Erica, & Brent. It's been since Easter weekend that we have all been together at once! I'm sure we'll all have a good weekend together again. The last time they came we really had a good time! The kids have adjusted well through all of this, and have had a lot of love & support. We are thankful for how God has helped & blessed us through this...

Have a great Sunday... God bless...
Megan :)

18 April 2008, 11:45pm EST
Update for Friday, March 18th:

+11 Days Post Transplant
ANC = 700
White Blood Cell Count: 1.0 (1000)

Thursday Kara's rash started itching, and then that night she had a dry cough, and it progressed to swollen lips, and also hives. She had itched before this, but now right then was having a reaction to something. They gave her 2 med's to help this reaction. This morning, her lips looked better, then later today, they were swelling again. We had noticed this one other time this week also. They are thinking that it could be a reaction to the multivitamin in her TPN, or possibly to an antibiotic they switched her onto yesterday. They think the first possibility is probably it, since other kids tend to have a reaction to this also. They have taken her off of both.

It sure does seem like something new has happened about everyday this week. She seems to be pretty sensitive to med's, which the Dr. said the engraftment could make her sensitive to them. About her tummy aches, he talked like they could be linked with the engrafting also. We also know steroids can cause your belly to hurt. The steroids were decreased a little bit, and they dropped her pain med down a notch on her continuous pump. One good thing is that her inflammation level in her labs was down by half of what it was on yesterday's labs. :)

We were taught today how to do TPN as outpatient. Hopefully, Kara will begin eating and won't need this! She tried a bite of a chocolate chip cookie today, and spit it out, saying she couldn't taste it. She is drinking Mt. Dew which is good for the calories, if nothing else! (Caffeine-free - we were up to 3 a.m. one morning with regular Mt. Dew !!! I guess we finally got smart!)

Kara played in Physical therapy, and walked to the bed, which is the first movement out of her bed in a couple of days, other than Thursday p.m., when she was sitting in my lap.

When Tony & I left this evening to clean up & get supper, we got a phone call from mom. Kara woke up with her belly hurting, with vomitting and diarrhea. We came back and she was still getting sick. She told us to pray for her belly. She still has a lot of mucous, but we've noticed in the past couple of days that it seemed to be better over-all. She was given an extra dose of benedryl, and fell asleep. Shortly after, we noticed she was breathing very fast, and she was starting to chill. We put the pulse/ox on her and her respirations were in the 80's range. She also was running a fever. The doctor was called in, and ordered her to have a breathing treatment to open up her airways. She also ordered her to have an X-ray. The Respiratoy Therapist, and X-ray tech came into her room, and she vomitted again during her breathing treatment. The R.T. listened to her lungs after the treatment, and said that he heard some wheezing in her upper right lung. Everywhere els e is getting good airflow. He said it is mucous, and and she needed to cough it up. The Dr. came back in, listened to her, and said the breathing treatment was effective, her chest x-ray was good, (she even took us in to look at it to help us feel reassured), and said we'll use it as a base-line reading in the event we would need another one. Her stats are currently in the mid to upper 90's range. If the nurses hear anymore wheezing tonight, Kara can have another breathing treatment. Her temp. the Dr. thinks is still due to the Engraftment Syndrome. She didn't seemed worried about that.

On her in's/out's she was positive on fluid, but I think she'll be alright. If needed, they'll give her another diruetic. She is resting good right now, and they are keeping the pulse/ox sensor on her all night tonight, and also the cooling blanket. She is getting tylenol as needed for her fever. Kara woke up when I gave her the tylenol just now. She has told me 3 times already that she loves me, and said good night a couple times. She's also told me not to talk 3 times, too. (I guess the steroid is probably still working!)

Thank you for continuing to pray for Kara, Danny, and Brooklyn. Please remember all the children. The respiratory therapist was telling us tonight there were a lot of kids in I.C.U. Thank you, God Bless...
Megan

17 April 2008, 8:09pm EST
Wednesday, April 16: Kara's ANC HELD at 200 and her white blood cells increased!

Thursday, April 17: ANC 500 and white blood cells doubled

Praise the Lord !!!

We definitely know that prayer works!! One of the transplant Dr.'s thought it might take longer to engraft, since she was getting cells from the marrow instead of if she got cells from out of her veins. But, she also mentioned that she got a lot of cells, more than what they like to get normally, so maybe it would happen earlier. We also have been told that engraftment for someone who receives their own cells (which is basically how it is for Kara), usually starts on day +14. KARA'S ENGRAFTMENT BEGAN ALMOST A WEEK EARLY, AT DAY +8!!! This is so awesome! Her blood cultures still are showing NEGATIVE. They stopped her GCSF, and have discontinued it! Her Dr. mentioned that she's in full bloom, when we told him her rash has spread to her feet. He expects full engraftment in a couple of days.

There's trying side effects to the steroids that are used to treat her Engraftment Syndrome. It's moodiness, anger, frustration, unhappiness, irritability. That's what Kara's experiencing today. She has yelled & cried. The Dr. started to get a little concerned with her lungs, but hearing her from outside the room, he said jokingly, "Throw away her breathing excercise tool!" Tony could hear her from the other part of the floor! Tony asked her Dr. if he could have his name & number so he could call him at 2 a.m. He said the name he gave us wasn't his real name. Tony wondered if he could have Ativan (anti-anxiety medicine) that they give Kara. He said yes, he could have it in a "drip." He said for us to keep a sense of humor. I know it can only help right now! It depends on how soon she fully engrafts before we can start weaning her off of the steroids.

Tomorrow, they plan to wean her off of one of her med's, and also teaching us how to do her I.V. nutrition so we will know how to do this when she's discharged. Her mouth keeps looking better everyday, and she is drinking more each day. She even thought she'd try to eat mandarin oranges, but fell asleep. The nutritionist said that as she engrafts, she will get her appetite back.

Yesterday a.m., Kara's temp reached 105.7! (This is while she was off of tylenol) She was alseep and under a cooling blanket most of the day. Her temperature never reached that point again. At one point in the day, she wasn't even running a fever. You should've seen her rash - I asked her Dr. if he needed a light to look at her because the lights were off, and he said, "No, she looks like Rudolph." He said it's typical Engraftment Syndrome rash. They are keeping her on tylenol every 6 hours now. We have noticed here recently that her fever comes for a little bit, and then goes away, and it hasn't been as high as some of her previous temps. The Dr. said that would be one of the things we would see as she engrafts, and then it will go away. The rash will go away, too.

Her nurse practitioner said that Kara proved her wrong about the engraftment, and that she's an "Eager Beaver." I probably have rattled enough about it, but God is good! Whatever you're going through, God is able to give you the grace & strength you need to face it and go through it. Know that He's bigger than all of our fears, and He sticks closer to us than anyone can. Just give it to Him, trust Him with it, and He'll bring you through it. We appreciate every prayer that you've prayed. God has been so faithful and mindful of us. We love you all.....

Have a great night, and God bless....
Megan :)

16 April 2008, 6:21pm EST
Update #2 for Wednesday, March 16th

The Transplant doctor just came in. We told him that the only time Kara's been out of bed today, was for her bath. He said the rash he is seeing is typical of the Engraftment Syndrome. He is ordering the steroid so we can start her on it, & he said hopefully she will be feeling better by tomorrow evening. He said this will slow down the engraftment process, but she is engrafting a week early, and this will help her to feel better. Her lungs sound beautiful. We are so thankful that they really think this is the issue we're dealing with, and not something else. Thank you for all the prayers - we love to hear from you, too! God Bless!

Megan

16 April 2008, 2:19am EST
Wednesday, April 16th
+9 Days Post Transplant

ANC on April 15th, +8 Days Post Transplant = 200 !! :) :) :) :) - I don't think Kara's nurse wants us to get too excited over this, but we can't help it, we are a little excited !! We have been told before the transplant that the ANC can start up, then go back down to 0. We are real anxious for Wednesday's counts. Even though it's already Wednesday, they won't draw her labs until 4 a.m.

Whew! What a day we had yesterday!
Monday p.m. was probably one of the sickest times Kara's had in her treatment. Then, about Midnight, she was like a different kid. She was riding her scooter, smiling, and talking. Tuesday a.m., she woke up sick, and her fever was 104.7. (She is able to take oral tylenol to help her fever without it bothering her mouth.) She ran a fever most of the day. One or two more times it's been 104.7. All of her blood cultures are negative, (they drew more on Tuesday afternoon), her CT scan came back negative. Even her sinuses showed improvement from her last CT scan prior to admittance. She is on plenty of antibiotics for a bacterial infection, she is even on a viral antibiotic. Something changed today. She was getting a platelet transfusion this a.m. (1 of 2 she received today). Then, she starting developing a rash in her upper chest and shoulder area. I thought she was having a reaction to the infusion, even though she's NEVER had a reaction to a blood product before. The nurse took note of it. Kara didn't itch with this, either. The nurse practitioner also came in & looked her over. Lungs sound good, inflammation marker is up again, but she was smiling, happy, acted more like the good side of Kara we saw around Midnight Monday night. Both the nurse, and N.P. wanted us to inform them if her rash seemed worse. Well, she had a better time in P.Therapy today, but she was shaking from the fever. She also laid down at one point, then went at it again. She was trying. She was ready to sleep after that, and has slept most of the day. As the day went along, her rash got worse, and when I mentioned her skin to her nurse, she said we'd be culturing her for a virus. At first, she thought that it was a reaction to the infusion, too, but she said viruses can cause rashes like she had. This news also brought with it fear. This is what we have been trying to avoid all along! As the day was going by, her rash seemed to be getting worse, and day by day we're seeing an increase in her temperature rating, and even with tylenol, it's not always bringing it completely down, and we don't know definitely the reason for it! Her nurse said that she has seen this in infants, and it's treatable with certain viral antibiotics. Her nurse practitioner gave me a hug, and asked what she could do to make me feel better. I told her just to pray her counts come up! Some viruses, probably most, just have to run their course. When you don't have much of an immune system, you don't want to take that chance if you can help it! She reassured us that her vitals are good. She would be concerned if her blood pressure, and respiratory was low. Right now she is stable in these areas. Her heartrate is up, but she is fevering. We also had a good talk with the Transplant doctor. He said that we know she is running a fever, and also has a rash. This can either be: VIRAL, or ENGRAFTMENT SYNDROME.

Right now, we are waiting on the results of the viral testing. There are only about 100 viruses you can actually test for. Not all viruses are treatable, some just have to run their course. She is already on an antibiotic for a certain type of virus. If we get in a hurry, and use a different antibiotic to treat a virus that we're not even sure she has, then we could do damage to her kidneys. If it is engraftment syndrome, then they would treat it with steroids. The doctors gut feeling is that it's engraftment syndrome, by the way she has seemed to feel better, and her mouth is looking better. Even a night nurse has seen this and said it's the engraftment syndrome that she has. The nurse explained to us that her marrow was empty, and it's being blasted with cells, which is good, but it causes fever, rash, and tonight they are watching her oxygen level and heartrate, which we are not having a problem with. We did have the on-call Dr. look at her because her rash is worse tonight, and her lips are swollen which is new, but after looking at her, and watching her pulse/ox he is not worried. But, we've also been told that her rash looks virally by more than one person. He wanted to stop her GSCF (med that makes her counts come up quicker) for now, and watch her for the next couple of days. She will fever probably the next day or two, sometimes he has seen that the fever just happens to leave. We will just have to watch and wait. If we treat her as having engraftment syndrome, and it turns out to be a virus, the steroids would be bad for the virus. So, as bad as all of us don't want to sit back and not be actively treating her for something specific, we have to wait a little bit longer to make sure they treat her correctly. I hope all of this makes sense.

Keep praying for Kara - and keep remembering Brooklyn & Danny in your prayers, too! We appreciate you all -

God Bless,
Megan

14 April 2008, 5:15pm EST
+7 Days Post Transplant
A week has already passed!

I'll try and get a quick update in with as much information as I can about what's going on with Kara last night & today. This will be more cut & dry tonight.

Last night: Kara had diarrhea, headache, vomitted, fever was 103. in night, then it went back down - Tony was in here with her, he didn't get a lot of sleep, used ice packs under her arms. Night before last, her fever was also up to 103. and they used ice packs - seems to be higher in night. They used pulse/oxygen sensor last night, and her stats were good.

Today: woke up happy, went back to sleep, when she woke up again, had headache, wanted in the sitz bath, then was sick again with vomitting & diarrhea. Yesterday, noticed more frequent complaining with headaches, they are changing her morphine Cadd pump over to Fentinol to see if this helps. Headaches are a side effect to the medicines she's on, too. (?????) She has been content to lay in bed yesterday & today. We could usually tell in her conditioning regular chemotherapy when her counts were pretty low by how she acted more agitated and tired. They just don't feel well. P.T. came today, she just didn't feel good, she didn't finish all her therapy. She ended up in bed, and is currently getting a blood transfusion. She also had another platelet transfusion this a.m.. Her blood level being low can also cause a headache. During P.T. her transplant Dr. came in & Kara had started complaining that her neck hurt - Dr. thought this was her muscles & it was good she was up & about. After her transfusion, they will be giving her a diuretic, she is above her admittance weight now. Her N.Practitioner said they could either increase her amount of Zantac, or add another med for her tummy if I understood her right this a.m. - She's not eating, and then having the acid in her belly, and if there's blood in there too, you can imagine her belly being upset. She has been averaging about 1-2 x's/day with the diarrhea, and 2x's/day vomitting, here recently. Her eyelashes, eyebrows, and hair are all coming out now. Nothing is growing on her blood cultures, and they are doing urinary analysises every day. Her fever is currently 102.8, they have added Tobemycin; a broader-range antibiotic for more coverage against something bacterial. If they knew the cause of the fever, they could have a more "pin-pointed" type therapy. Like we've faced before, we may never know the cause. It is standard to do a CT scan after so many days of runn ing a fever. This will be tomorrow, and it will scan her sinuses, chest, and abdomen. The nutritionist stopped by, asked if she was eating or drinking anything. Tony told her a little bit of ice chips. She said not to worry, they've got her under control, and when her counts come back up we'd be surprised at how fast her sores go away. I asked the Dr. about her opinion on engrafting. Maybe by the beginning of next week, but it usually takes longer when the cells come from the marrow instead of the veins. We asked the N.P. her opinion, and she said she did get a lot of cells, and normally it takes 2 weeks with a child that gets their own cells back, and that's how it's considered with Kara, so she said maybe we'll see something in another 3 days. That would be Thursday, 10 days post transplant. Time will tell, none of us know for sure. We just need to keep her comfortable, do her daily duties, like mouthcare, and sitz baths, and breathing exercises , and play the waiting game. She is being watched closely. They're taking good care of her here. Keep praying in the meantime she doesn't contract any viruses or bugs that may be going around, and please remember Brooklyn Durham, and Danny Parsley, and all the little children battling cancer. I'll update again tomorrow to let you know how it's going.

Thank You!
Megan

13 April 2008, 2:35pm EST
Day +6 Post Transplant

Well, today is the 2nd day of receiving her G-CSF to help her counts recover quicker. Tony keeps saying, 'Maybe by next weekend...' Until then, her mucusitis remains present. Her mouth is worse than yesterday. Her fever could be caused by this, or even caused by her counts being at '0'. We have ran into this before, usually more than not, and we may never know the cause of the fever. Since her body cannot fight off bacteria right now, and since she has ran a fever, they have changed one of her antibiotics over to more of a broad-range antibiotic (Mirapinem). Nothing has grown so far on her blood cultures. They did reassure us that all kids get fevers, this is nothing unexpected. They did tell us if she continues to run a fever, they may order a CT scan, just to make sure nothing shows up. She is at her lowest point, and hopefully she'll start getting her counts before long. We are just waiting.

Last night, she got sick again with her oral antibiotic, so the Dr. discontinued this. Yay! We are really glad for this, because she can tolerate her mouthcare well, just that yucky antibiotic was giving her problems. Her fever spiked up last night, so they put bags of ice on her. Since she's having mouth pain, they didn't give her tylenol. Unfortunately, this medicine doesn't come in an i.v. form. They think her weight gain is more from fluids than the fat supplement. They are going to put her medication in the lowest volume amount so she's not getting even more fluid. Her blood pressure is good.

This morning she woke up, and wasn't hurting too bad, but she was running a fever. She had her sitz bath, and afterwards we put her in a pillowcase because I didn't have her clothes in her room. She must have liked this idea, because after she was dressed and laying down, she was wanting her "suitcase" as she called it, back on. We thought this was cute. Right now, she is asleep, and has an ice pack resting on her. Her nurse just took her temperature and she's not running a fever. :) We are just supposed to do what we can with her today. Things may not change a whole lot as the day goes by, so I figured since we've already talked to the Dr.'s I'd let you know what we found out. Thank you for checking in, and have a blessed Sunday....

Megan :)

12 April 2008, 11:30pm EST
Update #2:

Kara's temperature has been up & down today, kind of borderline fever, but tonight they drew bloodwork to culture. We are under the impression that mucusitis can cause a fever. It's a good place for germs to grow. I'll know more in the a.m. after talking to the dr. if they're changing her to a different antibiotic or not. Tonight, while Tony, Lauren, & I were cleaning up at the RMH, Kara was taking her oral antibiotic. (This is the one that tomorrow will be her last day to take.) Well, she wanted the nurse to hold her, while mom gave her the medicine. Then it started hurting her. They had already pushed her pain pump, plus she is getting a continuous rate. Well, I guess it was bad, the nurse gave another boost of medicine. The doctor ended up ordering her continuous rate to be upped again. It seems that when she is given the medicine in her sleep sometimes, that she doesn't seem to have as hard of a time. I don't know. I know it's a struggle to get her t o take her oral med's here lately. Tonight she even said that when I came back I'd say "Hip, Hip, Hooray!" for her taking her medicine. So, that's what we did. Tonight it was pain, and there was even some blood with the mucus tonight. The nurse thought this came from her throat/esophogaus area. Other times it's been pain, too, but, we're thinking sometimes that she resists and yells because she doesn't want to take it, and this makes sense, if it has hurt her, of course, she wouldn't want that again. So, we're going to see if the drs. will let her skip her last day of her antibiotic tomorrow. Then we can just deal with her mouthcare. One good thing is that at her nightly weigh-in it shows she is back up to her admittance weight. She has been on TPN plus they've been giving her liquid "fat" to boost her weight. (I'm wondering if they have a donor room for this ?!!! ) Just an idea....

Tony bargained with her today, that if she would take all her med's that he'd buy her a tricycle to ride in her room. Well, he came back with 2 pink scooters instead. This was a great idea, because it helps her get up & moving, and strengthens her legs, and coordination. She & Lauren played hide-n-seek with some toys today. This also helped her to move around. She even had her butterfly net and was putting some of her toys in it, and said she was packing up for when she could leave.

Lauren went to the RMH earlier today with Mamaw & Papaw. A group was there with supper, and they gave her a webkin. She has been staying the night with them. Her back looks great. The steri-strips came off of one side of her hip, and it doesn't look bad at all. It's just a small pin-point size place where the needle was inserted.

I know the Lord is still walking right beside us through this. Tony & I laid hands on Kara tonight. Tony was praying, and I felt God's presence. I had tears rolling down my cheeks. He is a precious Savior, and I love to feel the peace of God that He loves to give. Yes, it would be nice to be back at our home church, singing songs, and praising the Lord for who He is, and all He's done, but it's good to know when I can't be there, He still cares, and lets us know He's still with us. He is our strength. When we were driving to the RMH, Tony started singing part of a song...then I had a song come to mind, .. we can't remember all of the words, but I thought I'd share them with you....

No one can touch you like Jesus can,
No one can give you peace, you cannot understand
No one can bind your wounds like nail-scarred hands
No one can touch you like Jesus can.

He is the rock, upon which I stand,
An ever-present help in time of need,
When this 'ole world leaves me all alone,
I can feel Him standing right by me.

He is my high tower,
a light in the dark hour,
without Him, where would I be?
Oh, Jesus, what a friend is He.

Good night & God Bless..
Megan

12 April 2008, 1:38pm EST
Day +5

I know the day isn't over yet, but the doctor and nurse practitioner came by, so I can tell you how Kara's doing so far.

Kara woke up this morning comfortable, and she's been smiling. She enjoyed her bath this morning. She was playing with a butterfly net in the tub. She calls it her jellyfish net. She is at "0" now, but today is the day that we get to start her G-CSF medicine, and we are hoping that the engraftment starts soon! Please pray this happens! Her CRP number (shows inflammation) still keeps climbing, but she's not running a fever right now. We were able to get a stool culture, and it's showing NEGATIVE for C-DIff bacteria, so she will be able to stop the oral antibiotic after tomorrow. They want her to have it for 7 days total, instead of the original 10. So after tomorrow, the only thing she will take orally is her mouthcare. :) Yesterday, her mouth seemed to look a little bit worse, and she started complaining about a new spot hurting. When the drs. and nurse practitioner looked this morning, the n.p. said it hurts to look at it. They have upped her contin uous pain pump amount, and her boost amount has been upped, too. The nurse is also able to come in & boost her if she needs more relief. Unfortunately, with the mucusitis it seems to get worse before it gets better. She has been complaining some with a headache/dizziness off and on over the past few days. It may be where she's laying down, and gets out of bed, when she's up & moving, and we think some of it may be that she's sensitive to some of her medicine. We noticed she complained with a headache 2 days during p. therapy, and then we noticed the headache/dizziness during her benadryl infusion yesterday & today. Her nurse is checking into this. They are going to give her more platelets today. Both her dr. & n.p. pointed out that she does look good, though. Right now, she is up playing on the mat with her dress up magnet dolls, and Lauren is at the RMH with Mamaw & Papaw Isaacs. Please keep praying for her to be comfortable until her mouth problems resolve and her counts come up. (Hopefully this will be soon!) :)

I appreciate you remembering Brooklyn, who is still at U.K. with a fever, and remember Danny Parsley. Mom was telling me while he was at the hospital, he suffered a heart attack, and they placed him on the ventilator. Please pray for his healing, and remember his wife & children. They are really special people to us! Thank you!

Have a great day!
Megan

11 April 2008, 4:00pm EST
When I woke up this morning, Kara was almost finished having a platelet transfusion. They are wanting to keep her platelets above 50 (50,000). We noticed yesterday that her bleeding in her mouth was slowing down a lot, and today she hasn't had any. Her transplant doctor and nurse practitioner were in this a.m., one of her counts that can show a sign of inflammation keeps climbing, but she's still on an antibiotic. If she runs a fever, they may change her antibiotic. She's guessing it's from the mucusitis. Her blood cultures aren't showing anything, which is good to hear. Her platelet and red blood cell counts are still dropping, and her ANC and white blood cells are holding at pretty much rock bottom. We will be starting her G medicine tomorrow that will help her body start to make her own blood cells again. We hope that she engrafts soon. She's on a morphine pump, i.v. nutrition, 2 antibiotics, an antifungal medicine, a medicine to prevent a virus flare-up, and benedry l to prevent allergic reaction to one of her antibiotic, plus we need to try and to her mouthcare rinses, her breathing exercises, and sitz baths. Last night, her nurse heard some congestion while she was sleeping, but it was better after she cleared it. It's from the mucus, but her lungs sound good. This morning her doctor said she needs to have some more coloring pictures hanging up, even do some art work on the windows, and be up moving around, and doing her breathing exercises. She also wants us to push her pain pump button before we have her take the oral antibiotic, and mouthcare. They will keep track of how much medicine she's using, and they will wean her off of it when it's time. We really need to have her take the antibiotic orally so it can work through her intestines. We are to get another stool culture, and maybe it will show up negative for the bacteria so we can stop that medicine, if not, she has to take it through the 14th. Right now, she is sleeping. I know this will help her to feel much better. She's been a little stressed again today. As bad as we'd like to let her rest & not push her physically, we know it's necessary for her body, too. She was contrary during physical therapy today, but she really didn't feel like starting it at the time. She just had some pain medicine and benadryl beforehand, so I'm sure that didn't help matters! This will all pass, it just takes time to wait for her body to recover from the chemotherapy. She still has her hair on her head. It's about 1/8 of an inch long, and in a certain light, or angle, it looks white-blonde. You can still see the dark in it, too. She is getting a lot of her eyebrows back, and her dark eyelashes. I don't know if she'll be able to hold onto it. Time will tell. Well, I feel like I've kind of rambled a bit, I hope all of this makes sense. Please remember all the little children bravely battling this disease.

God Bless,
Megan

10 April 2008, 11:31pm EST
Kara is sleeping, but we had to wake her up to take her oral antibiotic. She was crying, and she barely has a voice now. She was in pain, and said at one point that she was choked. She has the mucusitis. It is painful, and her throat is hurting. They've upped her continuous rate of morphine. She was acting like she was having "break-through" pain before the nurse adjusted her amount, and it takes about 3 minutes for the medicine to work once we push the pain pump button. She wants immediate relief once she pushes the button, so please pray she engrafts soon. She will start the G medicine on Saturday. This will last until her counts recover. She was pretty stressed yesterday at times, and we didn't help matters tonight. They don't feel good anyways when their counts are this low. Her nurse said usually they stop oral med's when they get like this, and pick back up later. I'm pretty sure they still would like her to continue the mouthcare. The alkaline saline will help heal her mouth, and the nystatin is good also. She didn't act like the alkaline saline was too uncomfortable just to have in her mouth. She doesn't have to swallow these 2. I think the majority of the pain is from the throat. So I need you all to pray that she will be comfortable, and her counts come up quickly so this will leave! Please pray for Brooklyn Durham - she is at UK hospital running a fever, and they're not sure yet what's causing it. This family needs our prayers & support right now. Thank you!
Megan

10 April 2008, 4:25pm EST
April 10: Day +3

I wanted everyone know that we appreciate the prayers and support for Kara & our family - we are thankful for God & His many blessings that He gives daily. To watch, the transplant looked like a blood transfusion, but it was so much more meaningful & special to us. Even the nurse, when she was getting the process ready, said, "Precious cells". I know we were sentimental, but it felt so "right", as this was God's plan, and we were able to watch it happen right before our eyes.

Tuesday evening Kara had the "big-eye", and didn't fall asleep until Wednesday at 3 a.m. Yesterday night she went to sleep around 11-12 p.m., and slept good through the night. Her mouth also has been bleeding, even though the mucusitis (mucous & mouth/throat ulcers) can cause bleeding, her transplant Dr. said her mouth looks good. The dentist took a look at her today. He thinks it's bleeding from 2 places. One, at her gumline, and also her cheek, beside the crown. The gumline may not have healed completely before her counts dropped. The bleeding has slowed down a lot, though. She was given 2 platelet transfusions yesterday to help the clotting. They have her on a morphine pump (very low dose) that runs continually, and if she needs a little extra boost, she can push the button. She still has been sick some, especially when it's time for her oral antibiotic. She'll have to take this through the 14th. This treats C-Diff, that causes diarrhea. The diarrhea has really slowed down, and we found out that the bacteria in her intestines (C-Diff), may not have been a really "true" positive. They compared it to what a C-Diff cell looks like, and it "kind of" looked like it. They have her on a lot of i.v. med's. They added fat with her i.v. nutrition last night, and this morning her weight was up. This morning, her ANC count was at 100, but the doctor said, basically she's at 0, right where we want her. Saturday they'll start her "G" medicine & that will help her counts recover quicker. Also, her labwork showed that her liver is picking back up, and that is really good to hear. She was pretty stressed this morning, (she doesn't have much of a voice now), but was able to have a good nap, and just finished physical therapy. She really enjoys this. We can tell her balance isn't the best. She told us just having her up out of bed, and playing on the mats, will help, even if we have to wake her up to do this. This will help her muscles working.

Thank you for keeping Kara & Lauren in your prayers, and also Bro. Danny Parsley & Brooklyn. Danny was able to have two stints placed, and he has good blood flow now, and they are going to put him on a list for a heart transplant. Brooklyn & her family really need our prayers right now; please keep praying for them!

Hopefully it will work out where I can get an update in tomorrow, too. Thank you for checking in!

Megan

8 April 2008, 5:48pm EST
It's been a busy day and the problems we've had today are with Kara keeping her oral medicine down. Her counts aren't at 0 yet, they're at 200. They said by day 5 they will be, and then they'll start the G medicine.

Her transplant doctor came in this morning and she said when she heard how many good cells they got she was about jumping up and down. Normally they don't get nearly the amount of cells that Kara got. So she said we'll hope for a quick engraftment.

We don't think there was a dry eye in our family when the transplant was beginning. We are thankful that the Ingram's could be a part of this with us. They're special people. Thank God for all he's done these 10 months for Kara. I don't think I can explain how we felt yesterday........it was like we were seeing His perfect plan taking place for Kara and it was overwhelming and wonderful. I feel like I witnessed a miracle! We were all in 2 different rooms, but it didn't matter we all were feeling and thinking the same thing. Kara was getting new life!!!!

She's had the antibiotic, vancamiacyn, that she's allergic too today. They gave her benedryl before hand and this helps, but they had to stop it, wait a little bit and restart it again. She was able to take the rest of it and she only swelled aroung her lips. They're going to give it to her again at 7pm. Please pray that she will do well the next time with this. She had her Physical therapy today and this is something that she loves. Also, the nutitionist came to the door with a big surprise...A homemade strawberry cake. She hasn't been able to eat because of her mouth sores, but she did get one bite of strawberry and this seemed to satisfy her. They're going to start her on TPN tonight and this will take care of all her nutritional needs.

Lauren had her blood work done and her counts are getting better already, so they removed the IV port and she's on the mend. Her bandage on her back was removed today also, and the 2 holes look very good. She can take a shower, but she can't be submerged in a bath for a week, and we need to watch for swelling, but we don't expect any, she's doing so well.

Our special friend, Bro Parsley is going to have a stint put in tomorrow and this is very serious for him, please say a special prayer for him and Brooklyn tonight. God Bless, and have a good night. We'll do another update tomorrow unless something urgent arises, then we'll let you know sooner. Thank you for helping and praying for Kara's healing, God is soooo good!
Sis, Mary

7 April 2008, 8:15pm EST

The update everyone has been waiting for

They harvested Lauren's bone marrow without a hitch, afterwards she had some nausea and pain, however she is feeling great now. She still has an IV in her hand. Although she wouldn't have to, Lauren will be staying at the hospital with Megan, Tony and Kara. They want her to remain healthy in the event that they have to go through this transfusion process again, they don't expect to, but it's just precautionary. She's a brave little hero.

The new life experience for Kara began at 1:30pm. Mary said that her and Megan both felt the presence of the Lord as the infusion began, and they were in different rooms. Kara's ANC was 600 yesterday, this morning at 4:00am it was at 200, and the nurses said that just before the infusion it seemed by the way that Kara was reacting that her ANC was probably at or near 0, this is just what they wanted. Tony, Megan and Lauren were in the room with Kara during the infusion. The doctors stayed in the room for the first little bit until they felt it was safe that things were going smoothly. Then the nurses would come in every 15 minutes to check her vitals and drips and to ensure that there that the blood was not coagulating. The doctors and nurses are all watching this with excitement, this is the first known case where identical cancer free cells are being introduced into a neuroblastoma patient, Kara can thank Lauren for this and we can all thank God for the amazing fact of identical twins. Once Lauren's blood was introduced into Kara's body they would know exactly what to do, unlike normal transfusions where the body tries to accept the new cells, these are identical to Kara's old cells, just without cancer. They know that Kara still has some cancer cells in her body, some of the doctors believe that Lauren's blood will recognize these cells as foreign and will attack them, this would be absolutely amazing. They still intend to do some radiation after this in order to attempt to kill off the remaining cancer cells, this is normal procedure. The transfusion lasted almost 4 hours, she was awake through it all and did wonderful. Currently she is a little grumpy, she's having some nausea and has actually vomitted and has some diarrhea. She has a bacteria in her intestines and they believe it's causing the diarrhea, she has had this before. She has gotten the mouth sores that are usually evident during transfusions, unfortunately this will probably get worse before it gets better, it won't get better until after the engraftment begins.

It will be two to three weeks before we know whether the marrow takes, this is because the engraftment takes this long. The engraftment is when Kara's system begins making it's own cells from Lauren's cells.

Because Kara's ANC is at or near zero, it's very important that she doesn't contract any viruses, this would be very serious and would place her in ICU. Please pray for NO viruses.

The great news for Kara is that there will be NO MORE G SHOTS, and no more IV chemo. Any more chemo she receives will come orally.

This is all I have right now, as I said at the beginning I may have gotten something wrong so there may be some corrections. I'm sure Megan will provide an email update once things wind down a little and she is able to look back.
Mike and Mary, Butch and Vonda, and Pastor and Sis Ingram will all be headed back home soon, please pray for their safe travel.
Jeff

7 April 2008, 2:00pm EST
Mary called, not exactly sure when though, I got the message around 2:00pm, but I haven't heard anything else.

Lauren is out of transplant and is in recovery, everything went really well but she isn't feeling good, she's crying and in some pain, they are giving her medication, Tony and Megan are with her in recovery. They are testing her blood to see how many cells are in it and then they will be bringing it up to give to Kara. At the time of the call Kara was playing in the room with Sis Ingram. Mary wanted everyone to know that things were going well and she asked that everyone keep praying.
I'll post more as soon as I hear anything....Jeff

7 April 2008, 0610am EST

Today is Transplant Day!!!

Please pray for Kara and Lauren...and the family too!!

6 April 2008, 6:21pm EST
Kara started to complain last night with her mouth hurting, but it didn't keep her from sleeping. She slept fine all night. She woke around 9:30 or 10:00. It was time for her to take her antibiotic, and after she swallowed it, she took a sip of apple juice, and then got sick a little bit, and complained that her mouth hurt. She has an ulcer under her tongue. They gave her morphine for the pain, and a 2nd nausea medicine. She got sick again. She said that her head felt "lazy". We interpreted this to mean "dizzy". It was time for her sitz bath, and her head was still "lazy", and she was sick again. She was so tired taking her bath. She ended up falling asleep with Papaw Mike holding her. She had a great nap, and was sick 1 more time after waking up. She & Lauren have been playing, and singing since she's been awake. She's been acting a little agitated some today, too. It sure has helped her to have the Mamaw's & Papaw's here to play with!

Her counts are still dropping. Her ANC dropped from 1200 yesterday to 600 today. We are hoping that it will be at '0' tomorrow.

She has only had 1 sip of apple juice today, and they plan on starting her TPN (i.v. nutrition) if not tomorrow evening, the day after. They have increased the sugar in her i.v. fluids to prepare her for TPN.

This morning Mamaw Lee was telling Lauren that tomorrow she has a surprise for her after the little transplant, and Lauren said, "little transplant." Tony said when they toured the operating room, and recovery room with Lyndi, the child life specialist, Lauren grabbed her hand and was ready to go.

One of the doctors said she's doing excellent, and another doctor looked at her mouth, and between the 2 of them, they've explained that when Kara's counts go down, that's when she will get the mouth sores, and when Kara starts to make her own blood cells from Lauren's marrow stem cells (engraftment), then the sores will go away. Hopefully, she won't get a lot of them, but what she has today, could just be the start. They will give her morphine for pain, and if needed, a morphine pump.

Tomorrow's the big day. For Kara it will be just like a blood transfusion. I believe it will be infused into her central line from a bag on her i.v. pole. (Sometimes they will do transplants using a syringe.) They want to do the infusion slowly, so this should last 2-4 hours. About every 15 minutes or so, they will come in to make sure the cells in the marrow don't clump up a lot, and check her blood pressure. Please pray that tomorrow goes so smoothly for both Lauren & Kara, and all of us.

Thank you for checking in, and praying! Please remember all the little children who need our prayers.

Have a blessed Sunday,
Megan

5 April 2008, 2:00am EST
Day -2
Day #7 High Dose Chemo

Well, Kara did it! She's had what will hopefully be her last i.v. infusion of chemotherapy. She will take chemo orally at the end of her treatment, but this should be the last of the in-patient chemo! Go Kara!

Kara is hardly eating at all now, she's lost about a pound. She was sick once last night, and once earlier today. She ate a fruit roll-up, and 1 pizza roll right before bed. This probably didn't help any. She still has had some diarrhea. She is on i.v. nausea medicine. Her blood counts are dropping, and that's what we need to happen. She wasn't too perky today, until both sets of Mamaw & Papaw's came. That was the best medicine for the girls. Kara was more active, laughing, and having such a good time with them today. Even after they all left, Kara was still smiling and in good spirits. It was so good to see her like that. Kara told me Papaw said they get to stay for a long time. :)

Sunday is considered Kara's day of rest, meaning no chemo. She still will have to continue her mouthcare, sitz baths, breathing exercises. Monday is coming up quick! We've been going through the motions of continued treatment, looking for this day for a long time! Lauren needs to be on the surgery floor at 7:30 a.m., but the procedure is scheduled from 8:30 - 10:00 a.m. Recovery is scheduled for 10:00 - 11:00 a.m. Please pray everything goes smooth for Lauren. She has never been sedated before. I suppose she may wake up angry, if she reacts to sedation medication anything like Kara. But, I doubt they would give her medicine to prevent this, since we don't know for sure that she will even react to it this way. I just hope everything works out smoothly Monday. Please continue to pray for Lauren & Kara, that God continues to help them through this, and that everything works out perfectly.

Good night & God bless,
Megan

4 April 2008, 7:22pm EST
Day -3
Day #6 High Dose Chemo

Sorry about not updating last night. It started out not too busy yesterday, but then stayed at a pretty steady pace as the day went by. Kara had more diarrhea yesterday, and they've cultured it. No word on that yet. Overall, she seemed to be feeling good. The girls were so cute yesterday morning. They were criss-crossing their leg over top of the other's leg. They'd say, "That's my leg" , "I don't know who's leg that is." Then Kara ended up pinching Lauren's toe, probably on purpose :) We were all laughing. They were standing around Kara's i.v. pole, and singing. It was so good to see them playing like that. She has not vomited 1 time - so glad for that. She still isn't eating as well as I would like to see, but she still is craving certain foods - yesterday she wanted green beans with ranch dressing. Today it's O'CHarley yeast rolls, and fried cheese wedges with salsa. Last night Habitat for Hope delivered a great meal over to our "Suite" on the fourth floor - THANK YOU, Habitat for Hope! Unfortunately, our bathroom ceiling sprung a leak, so we had to move last night into one of the tiniest rooms up here! :( They were worried about bacteria growing. Kara's physical therapist was checking to see if we're not able to move back into our old room, if we could at least move to a larger room; one big enough for the girls' play mats. Hopefully that will happen soon. :) I told them we were spoiled in there! Kara was glad to see John, her nurse she always liked to have while we were in-patient on the 2nd floor. He came up and played a little while with Kara.

Today has been a good day for Kara, her diarrhea has slowed down, and as far as her eating, her appetite was slow this morning, but she's eating right now. The dietician came in & told her she goes to the grocery twice/week, and wanted to know if there's anything that she wanted her to get for her. She said she wanted strawberry cake - Lauren was looking at the calendar yesterday and asking who's birthday it was. We may have to have a pretend birthday party :)

We also found out that Lauren's canker sore is nothing to worry about, (Praise the Lord!) Today, she had blood drawn for her labwork. They will notify us if there's a problem, but didn't expect there to be one. It's been 4 1/2 hours now, so no news is good news. Lauren & Tony toured the surgery operating room and the recovery room today. She met some of the nurses that will be there on Monday. Child life also came in today & did "medical play" with the girls to help prepare Lauren for Monday. She seems to have a good understanding of what is going on. She mentioned cancer twice, so I let her know that even kids that don't have cancer use gas masks & i.v.'s. She will be asleep before she's given the i.v. and the gas will be flavored/scented.

The nurse practitioner came in, and explained Kara's counts to us. Her platelets & hemoglobin are dropping, but she's not at the level for transfusions. We were surprised that her ANC & white blood cells had jumped up a lot from yesterday - ANC:4400, and WBC:4.4. She told us if there's some sort of inflammation, or start of infection, they can rise, but she's not running a fever, and her CRP level is still low, so that's all good. She mentioned some kids' ANC isn't at "0" when the child is at "Day 0" - (transplant day), but the counts WILL drop. A nurse yesterday explained that it's okay if they're not at "0" on transplant day. When her counts are real low, or at "0," is when she is most likely to develop mucusitis, and that is painful. Maybe God's helping her not to suffer a lot? Her LDH & liver enzymes are all high, meaning cells are breaking down, and dying. Her bilirubin, (tells about the liver) is good & low, and that's what we want. She said she is just doing excellent, and she's very pleased at how well she's doing. I found out they had special prayer for her Wednesday p.m. at Church. We appreciate all the prayers for Kara & our family. She only has one more day of chemo, and then a day of rest on Sunday. Monday is our big day - please keep praying!

God Bless,
Megan

2 April 2008, 5:08pm EST
-5 Until Transplant
Day #4 High dose Chemo

So far, today has been a lot like yesterday, just not as fast paced. I think the highlight of each day will be the window painting, but gym class and physical therapy come right behind it. Today in p.t., the girls had to jump across a popcorn mat on one leg, and then they tried it with both legs. Tomorrow they'll have bubble poppers in the mat, so when they jump it'll make the popcorn "pop". Then, they played hide -n- seek with a puzzle. They had Kara walk like she was on a balance beam, they played hot potato with a bouncy ball, then they'd have to squat down and roll the ball back and forth to each other. The other activity was a slanted board with a place on the far end for a stuffed gorilla, and on the high end there was a place for their feet. The girls would squat down, and jump on the board, then the gorilla would fly up in the air, and the physical therapist would sometimes try to catch it. A few times, the gorilla would hit the girls' noses. I need to get some pictures of them during p.t. - this is fun for us to watch!

Kara's eating seems to be even less today, and when I mentioned to the n. practitioner that she wakes up and doesn't want anything, then it picks up as the day goes a long, she said that she's on some strong chemo. Her labs and electrolytes are all good/fine. When she was admitted, her weight was 36.3 lbs., now it is 36.74 lbs., but it was 36.74 yesterday, so she's holding at that, and now she's eating less. We'll just take it day by day. There was a new chemistry level I noticed on the print out they gave me on her labs today. It was "Prealbumin". They explained this tells them about her nutritional status. Her number was at 12.3. When it gets below 11, they will probably start to get concerned. The nutritionist is watching her calorie intake, too. She hasn't been sick today. She started to have a little bit of loose stool, they think this is due to the chemo, but if it becomes more frequent, they will culture it. She will continue the oral antibiotic until April 8th, and we won't change her meds unless she gets a fever.

Right now, Lauren is at the play room with a volunteer. Tony keeps reminding us we need to have "gym class", so I need to go get her now. He's also mentioned that I'm going to be involved in this today - I guess that's a hint! :)

Thank you for checking in, and the continued prayers, please pray Lauren has nothing viral, and for smooth sailing in the next weeks. Also, remember Brooklyn & her mom's best friend, who also needs your prayers, Danny Parsley, and all the children!

Have a great night, and God bless,
Megan

1 April 2008, 11:20pm EST
April 1st Update:
Countdown to Transplant: Day -6
Day #3 of high dose chemo

Today was such a busy day! :) That does make the time go by, though! Kara didn't eat as much as yesterday, but she still is eating. Sometimes she'll crave something, (today it's been porkchops and bisquits -n- gravy), and then it will get here, and she has no appetite for it. This morning she just didn't want to eat, and they told me this is to be expected. She had a couple complaints with her tummy hurting, and once she even gagged, but not vomiting. As the day went along, her eating did get better. Everything's looking good with her labs, and her heart & lungs sound good, and she isn't running a fever. :)

Today child life brought in 2 large play mats for the girls to have on the floor to play on. This is so nice for them, because there's a couch, and 2 chairs in here, and then Kara's bed. So, this gave the girls extra play space. Yesterday, they played with doctor kits, and baby dolls. Today they brought in paint and matchbox cars for the girls. Painting is their favorite activity, so they had a lot of fun with that. They've really brightened up the room with their paintings. Tomorrow the child life specialist is going to bring in 'finger-paints' so they can paint the windows in their room. This should be interesting! :) Tony had gym class with the girls today. He had them doing windmills, toe touches, and push-ups :) :). When I came back from the Ronald McDonald House, I found out they had a second "gym-class" session, and he also told me Kara's tubing came loose again. This happened one other time with me when she was in-patient. Thankfully, he noticed it right as it happened, and he was able to clamp her line and only lost a little drop of her blood. Maybe she was a little too active today! :)

Today, Kara also met someone new. It was the physical/occupational therapist. This was more like a "play-date" for the girls. They "fished" , (checking her eye-hand coordination) and then had a second game to play where they had to bend down, pick up a toy, carry it with them while they hopped across a mat, then step on a stool, and then throw the toy. They want Kara to be able to leave the transplant process in as good of shape as coming into it. They want to keep her up and moving around. This will be good for her strength and muscles. They used today's activities as a "base-line" check. They like to come in 3-5 times/week. Tomorrow they plan on coming back, and maybe bringing in some different activities, and staying longer. I think this will benefit the girls a lot! Tony & I were pretty busy today, and I could tell that I felt a lot better by staying active. So, I'm sure this will only help the girls, especially since we found out last weeks VRE culture is showing up as positive, so it looks like Kara will be staying in isolation for a while! Well, hopefully I'll get to update sooner Wednesday.

Thanks for checking in and the continued prayers,
Megan

P.S. We noticed a canker sore in Lauren's mouth tonight. Pray that it isn't anything viral! She has another doctor visit this Friday, to make sure she's still cleared for Monday's transplant.