History

Wednesday, April 28, 2010 1:59 PM EDT

This will be relatively short and sweet. First of all, thank you for praying for my Grandma. She is home from the hospital and doing GREAT...Better than me actually!opl No other way to say it but that I was very, very ill at clinic last week and had to be admitted. It was a week as of yesterday. I am not asking for anything but your prayers. However, people have asked about what they can send so, I have a brief list:

Gas Cards: Shell, BP or CITGO

Food Cards: McDonalds, Bruggers, Mom & Relatives need to eat as they visit and help take care of me. Vending machine breakfast, lunch and dinner isn't so exciting OR healthy

Miscellaneous Money: I have little toiletry needs like deodorant, toothbrush, toothpaste (etc.) because I came in with NOTHNG. I was so sick I didn't think about or care about having extras. My mom did get me some clothes down here, and I need help doing my laundry. She can't (I told her not to) come every day because she's working and trying to help take care of my Grandma too.

Books: Puzzles, Worth and Math puzzle books, Christian Fiction--Jodi Piccoult, etc.

As I said at the beginning, the list is TOTALLY optional and is listed because people asked. The best present would be to see or talk to you guys. I love you tremendously and I want you to know that I continue to lift you up in prayer as you do the same for me. I can't call out long distance because my mom forgot to bring my cell phone (plus they don't like you to use them on this unit) So, you can reach me at 919 681 5206.

Thursday, March 4, 2010 2:52 PM EST

MY GRANDMA HAS BEEN VERY ILL, PLEASE STOP TO PRAY FOR HER BEFORE YOU READ MY UPDATE!!!

Wow, my website is very not creative, decorated and updated like I like for it to be. But, that indicates a life that is busy and full. It is busy and full of the Lord's blessings and is busy and full of some hard battles. You know the definition of the Christian life. If we battle with Him, emulate His life and fight the good fight, we will reign with Him, receive the Crown of Life and hear "well done good and faithful servant". If I want to hear that, I have to keep pressing on, count it all joy and be faithful in the midst of all of life's storms. That said, I will give you the medical info, but I will not complain. It could ALWAYS be (and has been) worse...

Let's see...I believe you got an October update. Well, you know as the saying goes, we then enjoyed Hallowthankmas and New Year's. I hate that it's that way, but once the holidays start, they all seem to run together. And, as a Christian, let me make it clear that I do not celebrate halloween in the way the world values it. We do a Fall Festival as a time to celebrate with carnivals and focus on preparing for Fall and Winter spiritually. Dressing up and candy is so fun and can be celebrated in a Christian way. And, of course, Thanksgiving and Christmas are Christian centered anyway. Speaking of those, we were able to go to the beach for Thanksgiving with my brother and his family, which was wonderful. Then we spent Christmas at their house, of course, because of the little ones. I will have to put up new pics to show how they are growing and they are so witty and cute. In between those holidays, we had several deaths in our family. They were very traumatic and I will talk about them at a later time, but please continue to pray for my family about this.

And, finally, the medical. October was the second anniversary of a surgery that was supposed to take six months to a year to complete so that we could do the left hip. Because of low, low, looowww counts...like hgb & plts in the 3,4,5 range for both...we HAD to go back up on steroids. That caused my hip to begin collapsing again. I made an appointment with ortho before my scheduled appointment due to severe pain...like almost in tears pain. Well, he put me back on "no weight bearing" on the right side again. After progressing to limited walking, that was a big setback and hard to deal with. He also increased my pain medication. I am already on methadone for severe pain and he added scheduled darvocet q4-6 (NOT PRN) which is kind of a big thing because they usually give pain meds PRN. Anyways, that helped tremendously with the pain and actually made it a lot easier to enjoy the holidays even though I was on crutches/wheelchair only.

So, now, due to my still low counts, the docs think I'm getting worse. Not like a MAJOR step into the worse category. But, over the years (and we have 30 years of experience--yes I had a birthday in there--<|:) since I was diagnosed at 4) we have generally been able to predict when we are about to walk off the cliff into "very serious" land. Hahahaha--that just sounds so funny when severe aplastic anemia is a life-threatening disease every day. But anyway, whenever things are about to explode we've usually been able to catch them. This is one of those times and we're trying to prevent them so I've been on a 4 week cycle of Rituximab which is a type of chemo usually used for Hodgkins. It was something Dr. K wanted to use in place of rATG which she said was much more toxic now that we have these targeted type drugs like the "-mabs". I've already had an hATG protocol with partial success, but obviously it didn't work longterm.

Everyone is now caught up basically. I am having a problem with my counts now possibly due to the Rituximab as it can make your counts drop in itself before it makes them better. For those AML people, it's like Mylotarg. So, I've had LOTS of transfusions in the past 6 weeks---approximately 12-15 units of blood. We are hoping this will even out once the Rituximab starts to work. We will have to wait at least 3 months for a definitive answer on that. Thanks for being patient for another update. With all the medical back and forth, I cannot promise when I will update again. But, I will try my best to do it at least monthly so people who don't see me at the hospital aren't wondering how I'm doing. I love all you guys and continue to pray for you whether I sign in on your pages or not. Thank you for letting me into your lives and I pray that you enjoy sharing in mine.

ALL because of CHRIST...

Saturday, October 10, 2009 1:31 PM EDT

RE-UPDATE SATURDAY, OCTOBER 24, 2009

Hey guys, this is long overdue. That's deja vu' is it not? :) As always, medical life is just taking up most of my time--in good and bad ways. I am thankful to be alive. I am sad that it takes SO MUCH to be alive and healthy just due to red tape and trying to make the healthcare system work for me and my family. But, you do what you can, you know? And, that's what I'm doing. I will tell you the most important things in review...we had a summer full of deaths in my church and my immediate and extended family. We had ...Sorry, company. Will finish later....hence goes my life...check back...

Well, here goes, like 10 days later. I'm so sorry guys. I kept forgetting, but I guess I'm allowed to forget some things considering all the things that have happened recently. For the rest of the summer we have been desperately trying to get the bilateral AVN fixed while I have to be on higher doses of steroids to make sure my bone marrow keeps working. And so goes the roller coaster...or perhaps with some rides on the swings included...up down...around around around...wheeee...repeat.

In between, however, I am walking again and able to put some weight on my right leg. The orthopedic surgeon had to give me some extra, different exercises to do on the right to keep it from collapsing more due to increased steroid use. I was playing my Wii Fit Plus last night--part of my re-training regimen (oddly enough also how I began to discover the AVN) and found that I've been able to lose about 40 lbs of steroid weight I've had since my brush with death in 2006-2007, over this past year. Those of you who know how hard it is to lose steroid weight while still going up and down on steroid doses will say a big AMEN with me!!!

As for everything else happening, it's just "normal for us" trips to Duke every 1-3 weeks. Sometimes more than once a week, sometimes a break of 2 weeks just depending on what's going on. I'm needing a new (to me) car that I can actually get in and out of without significant pain which is a long story. But, since I still need the left side done and it will be at least another 18 months out of commission like the right has been I can't stand the pain of such a low car. Also, I've had low, low, low counts (like hgb = 3) that is the reason for the increased steroids that we're trying to get up (counts) and down (steroids). The great part is that I won't be crippled over the holidays because my right leg still is not well enough for us to touch the left for AVN surgery :) Finally, thank all of you for your prayers. For those of you who have written guestbook messages, I will contact you personally. It's easier than trying to do a broad message to everyone. During this time, I have been able to do some volunteer work, house work (only because it NEEDS to be done), and my continuing work at my church as the Associate/Youth Pastor.

It's been scary and hard, but the blessings are ALWAYS there and God is ALWAYS good. He has blessed us with disability and medicaid so that I can continue to receive care no matter no matter how long it's taken; without me having to be a burden on any of you. That makes me so thankful. However, save those funds :) It doesn't mean I won't need you in the future. HUGS and BLESSINGS all around.

Monday, August 3, 2009 11:37 PM EDT

Howdy folks. It's me...in the flesh, or rather...in the write :). Those counts that were last printed were correctedly printed from July 14th. I seem to have a crisis about every 6 months that not worry not so much me, but seem to bother a lot of others. This time it's a doozy of a crisis that mimics Winter 2000 where my dad, uncle and grandfather died within six weeks...of time. This is certainly a place where you can always change time and make it shorter...or longer...than it seems. Her neighbors have been over diligently stopping by thinking it was her since there is a wreath on the door. That's one of the happier moments where we can happily say "NO!!, Smile and relay that both her grandson and son in law have died this week."

As for me, I have been at Duke quite often trying to determine why I decided to show up at Duke after a VACATION, mind you, with what Sue aptly named "almost a hemoglobin" one day :)My counts have taken a nose dive with my lowest recorded HGB was 2.9 and my lowest recorded PLT being 3. So, while holding on to God, and waiting with baited breath we'll continue to trust him. We trusted him while wading in the Medicaid waters and got approved when there was almost no chance in my situation, I was told. Then, all of a sudden, an acception letter this week. We praised God as much as we had prayed to Him. More after a Dr. K Clinic tomorrow. And all Dr. K's patients said...AMEN

Wednesday, July 22, 2009 12:50 PM EDT

Khalita's counts on July 14th were:

HGB 2.9
PLT 4
WBC 1.2
ANC 476-ish

She has not been up to updating as these are obviously very, very low counts and she has not been feeling well for quite some time. It is hard for her to breathe at times, much less get out of bed. Her counts are just so low it makes things too difficult as far as moving around. If you are sending funds to help or "pick-me-ups", please use the P.O. Box address posted. I took over checking that within the last week and will continue to do so until she is able. She also asked me (a cousin) to put something on the page so people aren't completely in the dark, hence today's update. She still has no insurance coverage and that makes getting treatment difficult which is unfortunate with such low counts. But, we serve an awesome God and are praying. Leave her a note to let her know you are praying. I am also checking her email (which is VERY backed up since she has been feeling so lousy). If you've sent something and have not heard from her, please contact us via this email address and I will try to get an answer as to where the item is/if it has been received. Thank you for your patience and your prayers. She really needs your support now.

Wednesday, May 13, 2009 11:55 PM EDT

Hi guys. First I wanted to apologize for being late getting back to you. I certainly haven't forgotten. But, as an example of how I've been feeling too "yuck" to get anything done, yesterday's most important counts were:

HGB 5.2 (no, this is not a typo)
PLT 9
WBC 2.2
ANC 970

Thank goodness they agreed to see me once again as Dr. K works her magic. I love that woman...she loves me too, I know. Most importantly, God knows me best and I am quite sure that since He has never forsaken me, He will not do so now. I really needed help medically and have been passing out as of lately. I don't know if you remember my last fall but it's in the archives. This time, I fell and hit my left side bruising up my shoulder and upper thigh. It could have been anything but there are some new things going on so we trying to determine the cause of that while I go for regular appointments because I can't go in for anything "normal". Falling is considered a "fluke", not an emergency. We all just stare at those making this decision (NOT my medical team) and ask ourselves "falling in a patient who just had major hip surgery with severe marrow failure ISN'T an emergency in itself? Anyways, yesterday, they said that if it happens just once more, I'm going to need an EEG and some other tests as falling is extremely dangerous for someone in my situation. Not enough blood volume, no platelets to stop bleeding; the list goes on. So, anyways, peaking of help, I really wanted to send a detailed message but just couldn't get the energy to do it. So, I'm going to post "general info" on this page and you can always email me with questions. So, here comes the basic and you will find details in your email.

The letters should be addressed to NCBSBC, re: Khalita C. Jones and state the following points somewhere in the body:

I worked and worked to pay COBRA and could not work past October 7th, 2008 due to a surgery (FVFG) that could not be postponed per doctor's orders. At that time, there was no accurate estimate as to when I'd be back. It would depend on how I was progressing. Without an income, it was impossible for me to continue to pay bills so I paid as much as I could and then my insurance was terminated. Before I went into the hospital for surgery, I had been informed that if I could prove that I was disabled before the date that I had to go on COBRA, then I would qualify for 10-12 more months of insurance. (see detailed email)

As for the money, please find all the details for that in the email sent to everyone. I appreciate you all SO MUCH and continue to think of you daily even though I may not get to sign into everyone's page. I'm proud of the things we've accomplished together as a cyber/real family (as some of us actually know each other face to face as we go to the same facility--I'm a Duke network person, for example. I hated to ask for this help and still don't like it, but what else can we do to help each other in times of need in MANY ways unless we make our needs known. God says "you have not for you ask not and when you ask, you do not receive because you do not ask with a sincere heart. This is the value system I was taught and I truly believe my heart is in the right place for asking, so (and by your guestbook entries/email) I know prayers are already being answered and am overwhelmed with God's goodness to me when I totally do not deserve it.

I appreciate calls, cards, balloons, flowers and prayers that many of you have offered to do for me. I am forever grateful. Let me know of anything specific you need from me and if I can, I certainly will. Love to all & shalom...until tomorrow, or whenever God gives me strength to get back for an update, or if there's a HUGE emergency outside my normal, I'll have someone update to keep you guys informed. I PROMISE. So don't worry all my "moms & friends" out there :)

Friday, April 24, 2009 12:58 PM EDT

OK everyone. Put on your helping hat. We finally have some breakthroughs and I'm going to need your help. For those of you who have been locked out for the past month or so, I apologize. But, I needed some "personal time" to think, pray and brainstorm with those who are my closest allies. In short, I'm between a rock and a hard place with receiving the life saving medical care I need and it's all a "money thing". I'm now unlocking the page because as things have evolved, I'm going to need everyone's help. I can't give too many details, but if you love me, I need help in one of two categories. Both are easy to participate in and are equally helpful. You can also participate in both. What I need is for you to choose one or both and let me know which you would be willing to do. I need a response ASAP as we are definitely in a time crunch on both issues. The ideas came from my "inside group" and now that progress has been made through prayers, I need to implement these ideas as quickly as possible. So, here are the options:

1 - Participate in the Money Campaign

If you support me here, you will be committing to raising $1, $10, $20, or $40 on my behalf to go toward my duke bill. There are several hundred thousand hits on this page. If there was even $1 for every hit, half of my Duke bill would be paid and I could continue to receive care there. You can ask 40 people for $1, ask your church for a donation or make a donation yourself. I have figured out a chart such that if so many people donate just a small amount toward my account, it would help SO tremendously. I don't know anyone who can't spare $1. If you are willing to help, let me know and I will set it up so that the money goes directly toward my Duke account to try and get the $400,000 paid and allow me to continue receiving care.

2 - Write advocacy letters to my insurance company

There is a way to get my insurance reinstated for another 12 months if I can get them to agree to it. We just got a disability determination that entitles me to 12 more months of coverage. Unfortunately, the decision took so long that my insurance terminated before the disability determination came in. Therefore we need to BEG the insurance company to reinstate my insurance for the 12 months I deserve as I had NO CONTROL over how long it took for the government to make a decision. If people would be willing to write a letter on my behalf to send along with mine to the insurance company, that would be wonderful. I will provide what it needs to say and give you instructions for how to get it to me so that all the letters get to the right place and person within the insurance office. I am hoping that with so much support that they will be willing to make an exception and reinstate my coverage so that I can continue to get the care I need.

That's all for now as this has already gotten a bit long. Rejoice with me for the Lord's goodness in opening some windows. Now pray with me that we can get through the windows together to make something happen that will allow me to continue getting the treatment that I need. If there's any question that I need care, I will leave you with my last set of labs. I felt sooo badly and had to go in for at least a CBC because I was at the "fainting, can't breathe well, in constant pain" stage...

HGB 5.2
HCT 16
RBC 1.64
PLT 7
WBC 1.4
ANC 437
BPs - 70s/40s (LOW for me)

They were all very worried about me in clinic and after some MAJOR red tape, Dr. K, in all her wonderfulness managed to at least get me some blood and my IVIG. We had to run everything very slowly so that my system didn't go into shock. For those of you not "in the hem/onc know" you cannot run infusions quickly when HGB concentrations are so low. It may cause your system to go into shock. We had to switch around a bunch of meds (which we had no money to pay for) and they made a way for us to get what we needed most--meds that I would die without. So, it was a 12 hour day, but we were very thankful that we could work it out to get what I needed most.

Thank you for your prayers and advice. Credit should be given to Heather and Sue for the ideas posted above. I hope that you will be able to participate in at least one effort. Please email me or leave a note in the guestbook if you're willing to help. I appreciate and love you all so much. And, if there's anything I can do for you, please don't hesitate to ask. I'll be right there to do what I can. I will update often now as time is of the essence in these endeavors. Love to all. And, as always, shalom...

Monday, April 6, 2009 12:57 PM EDT

Hello friends. I hope this Monday finds you all well. After the initial post, there are several things I would like to follow up on. It's just too complicated and tedious a situation to deliver or understand in one fell swoop. And, I knew it would be shocking to many (which is one reason I locked the site to share). So, now let me do a bit of "damage control"...

Thank you for shedding tears for or with me after reading of my most recent dilemma. I know they are heartfelt and they make me feel very loved knowing how much you truly care for me and are concerned for my situation. However, I do not, IN ANY WAY, want ANYONE to feel sorry for me. We have been SO blessed to have me here this long and doubly blessed to be able to be treated by what I truly believe is the best medical team anywhere in the WORLD for my particular situation (and that of many others). If this were a contest and I had to choose sides I would place this team against ANY other hem/onc/BMT team in the entire world and bet on them HANDS DOWN. However, the other side to that is that people die, for all kinds of reasons, and in "my medical world" not being able to afford proper health care is one of them. I have seen it happen to other people that I know. While I truly do hope and pray that this is NEVER the case for me, I would be naive to assume that it can't happen to me. We all learn that lesson at diagnosis. All of us were "normal" families until one day our world was turned upside down by a devastating diagnosis. It happens. And it happens to the faithful and the unfaithful, the saved and the unsaved, the righteous and the unrighteous, the just and the unjust. if you missed 60 minutes last night, please read the story that will explain what I'm saying. I'm certainly not alone in this predicament. We all live in this fallen world together. And life is not fair. But, God is fair and that's what I cling to.

The bottom line is, as a Christian, I have to accept that I am going to die sometime and only God knows when and how. So, there is no better thing to do than to put it all in His hands and leave it there. In the meantime, I continue to fight with all that is in me for the abundant life He has promised me while I am here. My goal is always heaven and hearing "well done good and FAITHFUL servant". If I am not faithful in every situation, since we don't know when we'll go, I can't claim faithfulness til the end. And, after all I've been through, I'm not about to let that happen. I will fight with all that I have for every door, window and hole in the ground that God opens. And, I will be faithful til the end.

Now, I'd like to address some suggestions and replies I received after my previous post...

1 - Duke does have procedures for Financial Hardship and Charity cases. Qualifying is the issue and there is red tape just like everywhere else. Dr. K is helping me explore that avenue. I have also applied for many government programs that I must qualify for and have been turned down for some and others are still pending. I can appeal the ones that I did not qualify for, but it's a process. A tedious one. A battle that it is difficult to summon the energy for while still trying to maintain a good level of health. I am not complaining. I am glad there are options. But the red tape is exhausting when YOU are the one who is sick PLUS trying to fight the battles yourself. So, we have some things pending and I am working as diligently as I can without further destroying my health. A difficult balance for sure and one that I cannot always meet. Someone suggested advocacy letters which is an excellent idea, but I need to figure out where best to direct that effort. Once it becomes clear what is the 'best' option, I will take you up on that one.

2 - The ER is an option for treatment in life threatening situations such as blood transfusions. However, there are some kinks with that. The first is that I would HATE to misuse a system that is already broken. Soooo many people use the ER for primary care that it's outrageous. That, however, is the least of my ER worries. Immunocompromised people and ERs do not mix well and I literally would put my life at risk by even going to one (which is why our medical team prefers we go straight to the floor for emergencies). An ER would only be able to give me blood as an emergency intervention and that is a process that needs to be done in a certain way due to my history so that would put me at further risk. Finally, I really need the IVIG to help with my immune system. This is NOT considered an emergency, but with me it kind of is since it is the immune protection I need. So, this makes the immunocompromisation factor even more important...and dangerous.

3 - If you're having trouble with the guestbook, try pressing the 'back' button or 'refresh' button. This is a glitch resulting from the caringbridge updates just put into effect and they are working on fixing it. However, you can always feel free to email me as well. A message is a message--doesn't matter how I get it :)

OK. That is quite enough to chew on for now. I realize these are looong entries, but you can read them in sections. It's a long and complicated process and situation comprised of a 29 year battle for my life after getting a '6 months to live' declaration at age four. Nothing about that is short or simple. So, thanks to those who are standing by me and working hard to help me figure out where to go. We are not out of options, just out of money. And whether God decides to deliver the money, a dose of compassion to the "in charge", a break from the red tape, or a journey to my ultimate destination I am in it for the long haul. Thank you for being here with me. Until next time...Shalom.

P.S. I am feeling much better now. Thanks for your prayers. I do feel them so much. I am also sure that this is full of errors because I didn't proofread it. I am tired now and will fix the errors later. Please excuse them for now :)

Friday, April 3, 2009 10:12 PM EDT

Well, you're finally going to get an update with some information. Imagine that? I'm so sorry it has taken me so very long, but as you know, many things have just prevented me from updating until now. In addition to extending the time for people to request the password, I have also been very sick all week. Today is the first day I've actually moved from being in the bed or recliner all week (except Monday). But, thankfully and faithfully (as my God always is) I am being restored by a loving God who made me. I may as well get to the "news" part since I don't know how long I'll last on the computer. Chit-chat can be done later :)

Basically, I am at the end of the road as far as affordable treatment goes. Now, there are still plenty of options medically. But, I just can't afford to be treated anymore. I am not allowed to work (due to surgery and some hem/onc issues (like losing 1 gram of blood per week) and needing IV medications on a regular basis, etc. per doctor's orders. With no income, you can't pay for insurance. So, I used all of my savings to pay for that. No private company will insure me. I was denied medicaid (disqualified due to too many assets). All I could locate was my retirement money which I am working on deducting at a HUGE penalty, but that's not a slow process. But, there is an additional $25,000 they are claiming I have. So, until I locate it (if it even exists) I won't be approved for medicaid. I also applied for disability and have heard no definitive word on that yet. The caseworker called last week and said he didn't see any problems whatsoever with the disability part of the case (SSI & Medicaid are seperate and the whole process is way to complicated to explain now--I may do it in another update) and I should hear something about my approval in the next few days. That information is yet to materialize.

Sooo...because of the economy and financial stress on everyone, Duke is cutting off my care until I have some means of paying for it. Right now I owe them over $400,000. Dr. K is trying her best to work around things and get me treated anyway but that may come to an end at any moment because they really aren't supposed to be treating me right now with that kind of balance and no payment arrangements set up. I can't pay $5/month on a $400,000 bill. It's not Duke's fault and I completely understand. However, what it means for me is that I may die from inability to pay. I have seen it happen to friends and I am no exception to the ugly things that happen in this world of bureaucracy surrounding healthcare these days. In the position that I am in, I am reminded of Matthew 5:42-48...

42 �Give to him who asks of you, and do not turn away from him who wants to borrow from you. 43�You have heard that it was said, �YOU SHALL LOVE YOUR NEIGHBOR and hate your enemy.� 44�But I say to you, love your enemies and pray for those who persecute you, 45so that you may be sons of your Father who is in heaven; for He causes His sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. 46�For if you love those who love you, what reward do you have? Do not even the tax collectors do the same? 47�If you greet only your brothers, what more are you doing than others? Do not even the Gentiles do the same? 48�Therefore you are to be perfect, as your heavenly Father is perfect.

While we are angry, we must pray and be angry without sinning. Anger is not a sin--the actions thereof may be. Pray that people in charge will have a change of heart or work with me until something comes through. If I don't get medicine & blood on time, I'm going to die. Remember that none of us is excluded from any rain that falls, no matter how righteous God has set us apart to be. BUT, we are still called to be perfect and holy because that is the model Jesus set for us. He is the best role model EVER. Let us continue to press on and help others in any way we can instead of wondering why there are "bad" people who seem to prosper and "good" people who suffer. That is for God to know, but I know partially now. I know where I'm going if when my work here is complete. That's not true for many. ALWAYS cling to God and His Word. It's the ONLY thing that can keep us pressing on toward the goal to win the prize for which God called us heavenward in Christ Jesus. Otherwise the devil will stagnate us with questions and we ruminate rather than produce fruit. Never let production stop. I need you to do this in agreement with me as I agree with Him.

Those of you who have been prompted to help me in any way, I say thank you. The thoughtful words, cards, prayers, gifts and money have really been my lifeline as far as getting through each battle is concerned. Whenever I need it, God sends someone my way. I have been told that it's going to take a miracle to resolve this situation, to which I replied (with tears in my eyes) "well, miracles happen everyday..." I truly believe that. I ask you to stand and agree with me that although I do not know a single person with $400,000 to give, I believe that God has that much lying around. I also know that this could be the way He desires to call me home although I always felt that I would know when that time came and I don't feel that now.

So, there you have it...at least part of it anyways. I could not post this for all the world to see for several reasons. If you know of someone who is sincerely interested in standing with us in prayer, give them my email address or mailing address and have them contact me. I don't want this spread around as "general information". It needs to be private with the people who are seriously willing to stand by me. If I do end up dying this way, it will be very hard and I will need people who won't run. If I don't end up dying from this, it will be very hard and I will need people who don't run. My only request is that you not spread rumors and that if you lend your support, you are with me for the long haul. I've found that one of the most difficult things in the world is having someone to support you only to run or stop contact right when things get their worst. God is certainly always there, but I also believe He provides "Jesus with skin on" folks to be by our sides no matter what. If that's you. THANK YOU.

I will be keeping the site locked as I update you over the next several weeks so check back frequently for updates. I will need to share my emotions through this trial as well and I need to feel like I'm actually talking to someone so please sign the guestbook when you come--even if just to say "hi". Or, feel free to drop me an email. Nothing has changed about how I feel about you guys. If you took the time to email me wanting to keep up, then you care enough to keep up. So, thanks for being faithful friends. I am praying constantly for you guys as the Lord leads me. And always feel free to leave specific requests. I love to pray and it would be my honor to carry you in prayer as you carry me. That's what the Lord intended. Until next time...Shalom...

Friday, March 27, 2009 1:41 PM EDT

Let's try this once more. Sorry to those of you expecting an update. I promise to do one as soon as we all get our ducks in a row. If you haven't gotten the username/password information, it is for one of three reasons. (Please check the previous update if you are confused about the password protect--it explains everything) Either you are on my list that I am trying to wait on everyone's info to compile because I only intend to send one email, you asked for the password but did not leave me an email address to send it to, OR you did not get enough notice on the password protect. Therefore, I am going to re-open the request for 48 hours starting Friday, March 27th at 12 noon. PLEASE get your information to me by 12 noon on Sunday. I will be sending out the username/password information on Sunday evening and will be updating shortly afterwards as well. Feel free to email me or sign the guestbook to get your info to me.

Sorry to keep everyone waiting, but I cannot publicize this information so I have to lock it to share. I love you guys and continue to ask for your intense prayers and fasting along with me in Jesus name. It's a life or death matter and if ever I needed my support group, it is NOW. Blessings to everyone and know that you remain in my thoughts and prayers as well. Until Sunday...

Saturday, March 21, 2009 10:35 AM EDT

Hello friends. I realize this update is loooong overdue and I apologize. Life has been very busy although not with things I prefer to be busy with. Just as a heads up, I'm going to have to password protect the site for a few days in order to finish this update. But, I will give you the details that I can here before I add a password. As in the past, I ask that anyone who would like the password to please sign the guestbook with your request, or email me directly for the password. And, of course, PLEASE DO NOT SHARE! Just direct anyone who would like the password to me. The site will be protected Monday at midnight EDT. Sorry for the inconvenience but it's just necessary at this time.

Now that we have that out of the way, on to how I am doing. Overwhelmed would be an accurate description. Of course, I am in no way hopeless or dejected. I'm just in sort of a 2nd Corinthians 4 situation...

8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you... 16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

My counts have been pretty much baseline for me: 7-8 HGB, 1-2 WBC, 250-1000ish ANC, and 5-15 PLT. So, I am still getting blood, IVIG and Neulasta in clinic on a very, very regular basis. Platelets we try desperately not to do unless I'm bleeding. And, speaking of that, we had quite a bleeding episode on the way back from clinic this week. I have a double-lumen port through which they run all my meds--sometimes simultaneously just to try to get me out before 3am. It has worked and been a blessing. But, last night, we deaccessed me and held pressure just like always then slapped a bandaid and we were on our way home after a 12 hour day. I felt something wet on my shirt going home, but I assumed it was sweat because I'd had a fever at clinic (normal for me with IVIG so no cultures or auto admit--we just watch it (the fever) and if it persists we have to go back).

So, we get home and the light shed a whole new perspective on what was wet. It was my shirt--entirely soaked in blood--and the site still bleeding after a 2 hour drive home. Scared my mom...me, not so much. The next morning, a nosebleed greeted me. So, it was definitely time to let Dr. K know. We made a plan and the bleeding has since stopped. But, what that means is that my platelets may not be working as well as before. Or, it could just be a fluke, but none of us is leaning that way because of how it happened. So, more platelet transfusions may be in my future which is scary. I tend to become immune and get no rise in platelets the more they have to give them. Case in point--after being on a platelet drip/transfusions for several weeks after surgery, platelets were hanging in the single digits and we could not get them up. It was PRAYER.

Where I'm going with all of this is that with another surgery coming up, I'm facing a life death situation. It's complicated by payment to the hospital and that is what I'll have to password protect to fully explain and call on my prayer warriors to pray and fast in agreement with me and my family that we can get the matter resolved. When Dr. K came in the other day to check me out while my infusions were going, she said "you know if we can't get this resolved, you are going to die?". I said yes. Now before you flip, you have to understand. Dr. K is a straight shooter. If you need to hear something, she will tell you. And, she just wanted to make clear to me and mom what we were up against. You can't fight without the proper tools. So she (Dr. K) is working diligently from her end and so is my family. Now I NEED YOU. I rarely ask for much, but I am asking now. If you love and care about me and know Jesus, please send me your email address so I can give you the detailed scoop. I love you guys and continue to pray for you. Hopefully we'll be able to get rid of the password protect soon.

Saturday, March 7, 2009 8:17 PM EST

The thoughts and prayers are much appreciated and are for good reason. If God has put you on my heart, please continue to pray...and pray HARD! I will try and do a detailed update soon. Hard times recently. And, today I fell and really smacked my face. But, thank God my we think my leg/hip is in tact. I am leaning on God for my strength...as always. Thank you for loving me you guys. You mean lots to me. I'll update again as soon as I can...

Saturday, January 31, 2009 12:39 PM EST

My sincere thanks to everyone for your patience. I have been very sick this week and am still not feeling the greatest. I woke up yesterday morning vomiting with a SEVERE headache & fever. Lovely way to start the day, ya think? My mom doctored on me, got me back into a position I could stand to be in--there was only ONE and it was hard to find--and, of course, offered to stay here with me. She had to pick up a part-time job because I can't and we NEED the income. It makes me feel SO BAD, but there's nothing I can do. Admittedly, it was tempting to ask her to stay with me. But, she had already missed a day this week to take me to Duke for my all day appointment Tuesday and she has sacrificed so much through all of my latest trials with surgery and the like that I told her to go to work and promised to call if I needed her. Well, I didn't have to call...cuz she called me every hour on the hour to make sure I was OK. I have a wonderful mom.

I don't have much energy and can't sit up long before I have to go back to bed so I am going to get straight to the point and hope I make it through at least the important stuff before I crash. One thing that I am desperately in need of is a Recumbent Exercise bike to prepare for my next surgery. They have recommended that and swimming/water aerobics to help me get ready, but I don't have a YMCA or gym membership and frankly can't afford one at this time. I did look into getting a YMCA/gym membership, and in addition to it being out of my price range, even if I could afford it, going there requires driving and while I can now drive short distances, I would really need someone to be there at the gym with me at all times which is not really a possibility at this time as my mom is working and trying to care for both me and my sick grandmother in addition to her own personal needs. So, the cheapest and most feasible route is to get a bike for home and keep trying to find someone who will allow me to use their pool with them for free or a nominal fee.

According to my surgeon, the bike is actually more important. And, this needs to be purchased ASAP as the surgery for the left side is coming up more quickly than we'd like. Just as was suspected, because I have bilateral disease in my hips, putting all the weight on the left while the right heals has caused the left side to steadily worsen and it is now causing me significant pain to get around at all. The purpose of the bike (and water exercise) is to try and build up the right side a bit more quickly without damaging that graft so that we can get to the left as soon as possible. In the meantime, needing to do this next surgery so soon pretty much scratches work until sometime in 2010 so I am in the process of applying for disability/medicaid. PRAY FOR THIS HUGE UNDERTAKING PLEASE.

Generally, the ideal time frame for the next surgery would be sometime Feb-April. But, because I am taking a bit longer to heal (as expected due to underlying aplastic anemia issues) we are going to have to push it as long as possible. The goal is the same as with the right--catch it just before it collapses. I'm not sure if you remember me telling you, but we caught the right JUST as it was collapsing. It was God's PERFECT timing. Had we postponed surgery just a few days more, we would have had to go to a much more dangerous and invasive procedure (hard to imagine based on the major surgery I had to have anyways). So, we pray for God's perfect timing on the left side as well. And, pray for pain relief when walking so I am not confined to a wheelchair ALL the time which would prolong recovery even more and increase the risk for all kinds of other potentially dangerous complications including blood clots. A recumbent bike is ideal because it supports my back and puts the least pressure on my hips and other joints. So, because Sue asked about needs, THIS (always in conjunction with prayer) is what I really NEED right away. Feel free to email me if you would like further details. It has been added to my wish list from before the first surgery for those of you who still have that link.

While I'm mentioning needs, I also want to say thank you to all of you who contributed cards, calls, gifts and monetary donations throughout the last 3 months. I won't name names but I did receive checks, cash in the mail in denominations of $20 (thanks--you know who you are), cards and lots of love. In case you have not yet received a personal thank you, I wanted you to know that your kindness was greatly appreciated and all came at the best time--literally, right when I needed to pay for something and was down to my last bit of money, something else would come in as if from God's hand. It really blesses me when this happens and I want you to be able to rejoice with me for your obedience to God in giving when He prompted your heart to give.

So, that's what came out of my January 12th visit with the surgeon. On the hem/onc/bmt front there are also some things to discuss. My counts have been trending a bit lower recently. The two sets of January counts are as follows:

January 6th
HGB 7.3
WBC 3.0
ANC 1294
PLT 9

January 27th
HGB 7.2
WBC 2.7
ANC 1350
PLT 8

So, where I was running around HGB = 8-ish every three weeks, I am now running HGB = 7-ish every three weeks. WBC is low, but thankfully Neulasta every 10-ish days has been holding my ANC at a reasonable level. Platelets had been running 10-20 and are now running about 5-10. Theoretically, I'm supposed to be transfused with PLT < 10, but since I was not actively bleeding we decided to hold our breath and pray. This is mainly because we know for a fact that when I have my next surgery, I will again need upwards of 30-40 units of platelets. And we certainly don't want to risk building up antibodies so that I don't get a bump at all from transfusions (which has happened before when I've needed lots of platelets) so the goal is to transfuse as little as possible. I'll also need a heck of a lot of blood since I'm needing it like clockwork every 3 weeks even without surgery.

No one knows why the counts are trending downward or what to do about it. We DO know that the steroids are both causing my bones to die and keeping my marrow working. How the heck do you balance that? We don't know. But, we took a leap and decided to start lowering the prednisone. Since I'm already trending downward before lowering the steroids, no one knows what kind of impact this will have. But, we have to do something. The best news is that I could not be in better hands. I have the hand of God over me as it has been since before the day of my birth. And I have the best medical minds in the world calling the shots and standing by with plans A,B, & C-Z. So, this is just another twist on the rollercoaster we'd often rather get off. But, I do love a good rollercoaster ride and just like the amusement park coasters, once you're buckled in, you're in for the long haul. The coaster stops for no one until the end of the ride. Life is the same way, soooo, if you're riding with me...buckle up and keep your arms and legs inside the vehicle at all times :)

Just some general information is that I am trying to do things to keep me connected to the world when I feel up to it. I feel that it is God's way of showing me just how much He really is continuing to use me even though I feel isolated and useless at times. I have been asked to do a media outreach for area blood drives. There is a blood shortage and, of course, without donor blood and platelets I would not be alive. So, I am meeting with the Chamber of Commerce next week to organize that. And, more immediately, my mom allowed me to invite some friends over to watch the Super Bowl tomorrow. I hate that I'm not feeling so well, but these are people who will understand if we have to cut the evening short. I'm just glad that I get to have some people over without worrying about having the energy to entertain.

My family is pitching in to help do the work so I can just enjoy time with my friends. And the most special part? We'll be looking for my brother and his co-workers ON TV!! Do you believe that guy? Makes me MAD (in the good sense:). If I weren't semi-confined/crippled/sick, I'd be right there with him in a heartbeat because that's one of the special things he brings to my life. I LOVE to travel and am able to take many trips that I never imagined being able to go on because he is often able to invite me to go with him through his work. He is an amazing man with a wonderful heart for family, and I am forever grateful for him. He has been even more protective of me since my dad died. He really is a special guy. Love you bro! My sister in law and niece & nephew will be watching from home too! When I can't socialize, a part of me dies because I LOVE interacting with PEOPLE. God knows this and while I can't BE at the Super Bowl this year, at least I can enjoy it in a special way. Phone calls, while wonderful, just aren't the same. So, praise God for all the many ways He continues to take care of me---physically, mentally, spiritually, emotionally and socially. Just goes to show once again that He cares about EVERY detail of our lives. For that I am SO grateful.

So, that's about it. I know this is a whirlwind update and forgive me if it rambles and is redundant or doesn't make sense in places. As I said, I'm just not feeling well with nausea, vomiting, pain and fever getting better but still lingering. So, I was typing like a madwoman trying to finish before my body and mind crashed and I'm not quite sure if I made it (as far as the mind part goes) in the 15 minutes it took me to type this. I hope it makes enough sense for you to tell what I meant to convey. I will come back and re-read this later and fix any mistakes. For now, please just overlook them and pray where you find prayer requests. Also always feel free to call 336 250 9175. If I'm asleep, you won't disturb me because the phone will be on silent. I am available for you to pray for you, encourage you, and to answer any questions you might have or just to say "hi". I'd love to hear from anyone who needs/wants to talk. I love you all and continue to lift you up as God brings you to mind and heart. Hopefully, I can update again soon. Until then, Shalom...

Wednesday, January 21, 2009 2:07 PM EST

Congrats to Sue for guessing correctly. I stood without walker or crutches. It was actually by accident, but I found myself doing something and then realized I was standing unaided. It was short-lived and happened because I had taken pain meds shortly prior to the event which cut down on the pain and since I am normally in some amount of pain anyways, I just didn't notice that I was standing. So, YIPPEE!! I also did all of those other things mentioned minus "taking a walk", but the only ones that occurred for the first time last week were driving (got approved to drive no more than 15-30 mins. at a time) and standing unaided. The tub bath came a few weeks ago. All are wonderful milestones and make me so happy.

I'm still not allowed to put full weight on my right leg so wheelchair, walker or crutches it is. I just wanted to announce the winner. I actually had a horrible night last night writhing in pain that was so severe I almost asked my mom to take me to the BOPP Unit ("our" version of an ER located on 5200 so that we don't have to be exposed to the general ER and risk catching something or not being cared for as promptly or as thoroughly as we should be while waiting HOURS for things to happen or to be admitted if necessary) at Duke in the middle of the night. But, after feeling as if I was going to faint several times, I got more pain meds on board, used a moist heating pad and a LOT of prayer. Thankfully, it started to subside just a bit after about 2 hours so, we just continued praying and I was able to fall back asleep.

So we were able to avoid a 2hr drive in the middle of the night. But, I'm exhausted today and still hurting more than usual so I'm going to wait to do the update. It's an important one so I want it to be coherent and detailed. As soon as I'm feeling better, I promise to give you the update...complete with more requests since Sue asked. Yes there are still needs--especially with another major surgery looming in the near future. Stay tuned. I love you all and continue to lift you in prayer. I promise to be back just as soon as I am able to sit and update in detail. In the meantime...Shalom :)

Monday, January 19, 2009 6:07 PM EST

Keep guessing...If you don't know what that means, then please read my previous entry. In the meantime, I just wanted to reflect on today's holiday. Not many people have mentioned this holiday on their blogs/sites, but to me, this day is right behind the major Christian holidays like Christmas and Easter. Why? Many may assume it's because I'm black. Many don't really understand the difference in being black in America and think that all is equal and color doesn't matter. God is certainly no respector of persons and He created us the way we are without any say from Him. But, the truth is, because of our history, living life is a bit different. How? Let me give you an overview...

Have you ever had someone follow you around a store afraid you are going to steal something? I have. And no, it's not because I look intimidating :) Have you ever had the police continually pull you over assuming you are selling drugs because of the car you drive? My brother has...and he got rid of his 700-series BMW because of it. Have you ever had someone spit in your face and call you all kinds of inappropriate names while you watched them get transported to school on a bus you could not ride but that passed right by your house every day? My mom has...and she worked harded to succeed because of it. What a victory to hear her called Dr. Jones now. Have you ever had someone ask you how in the world "a black person" got into a prestigious university? Or stare in disbelief that your full scholarship is not a minority "quota" scholarship? I have. Have you ever had someone roll down their windows and yell f-ing nig... to you while yelling all sorts of other expletives & other racial slurs? I have. Has anyone ever refused to help you in a store (especially an 'upscale' store) because of the color of your skin? I have. Have you ever had to explain to a 5 year old why his playmate at school is chasing him around the playground calling him nig--- and pushing him down repeatedly? Happened to my nephew and cut us to the heart to have to discuss that with him at such a young age. Then again, we all remember having "the talk" about how these things are going to happen and realized that he'd have to know soon anyways. So, we just seized the moment to help him understand and with God's help and wisdom, we were able to resolve the issue...until it happens again.

All these things I have mentioned have happened in the last 10-12 years with the exception of my mom's incident & that happened in the last 40 years. And these are not isolated incidents. I could give you an example almost every day of someone in my family enduring a "racial situation". Thankfully, we are a strong Christian family that understands we are equal in God's eyes. That, however, does not keep it from cutting at your soul when people treat you differently from others due to the color of your skin. And, for me, I'm also treated differently by people of all races because of various medical conditions (i.e. having to wear a mask, use a wheelchair/walker in public, etc.) So, you see, I exist differently and deal with discrimination from MANY sources almost daily. So, yes, this means a lot to me. To remember someone who fought so that I could experience what I mentioned rather than being shot, killed, beaten or jailed because of my skin color is an honor. We've graduated to less violent discrimination. And tomorrow, when an African-American becomes president of these United States, we have hope that we can again "graduate" to less overt racism and really begin to discuss and diffuse questions and actions that promote racism.

Obama's not a miracle worker. That's God's job. But he is someone who experiences these things too. So does his wife. She went to Princeton and her first roommate refused to room with her because she was black. They moved their white daughter out so she wouldn't be "corrupted" by living with a black woman. Tomorrow, that woman will be first lady. That feels like a small victory in itself. It is important to him to rid our country and our world of these type experiences to the best of his ability. And that means something exciting and extraordinary. Just like no one can know what it's like to live in hem/onc/BMT land unless they have to live through it, Obama understands racism and is an "insider", so to speak, on what to do about it. That makes me happy. So, today or tomorrow (if you haven't already) please do me a favor and meditate on the history being made for all Americans...and especially African-Americans for whom the pain of racism still runs very deep.

I will be back with my promised update as soon as someone guesses what I did last week for the first time in over 3 months:) In the meantime, please consider my above words and please pray for Zachary's Family . I mentioned them for prayer as Zachary was going through the dying phase and he has finally gained his freedom in death. There are no words, but prayers and just a note to say you are thinking of them would mean so much to them at this time I am sure. It would mean a great deal to me also. They are a fellow warrior family and it pains my heart each time we lose "one of the gang". Take care and God bless. I'll be back soon. Shalom...

Friday, January 16, 2009 9:53 AM EST

GUESS...WHAT...I...DID this week for the first time in more than 3 months?? No really, GUESS! I'll be taking guesses in the guestbook. As soon as someone gets it right. I'll be updating in detail. And we have PLENTY of detail to update from my last two clinic visits on the 6th & 12th. Guess away...

Monday, January 5, 2009 12:22 PM EST

Hello friends. Well, I suppose it is obvious that I did not get back here before Christmas to do an update. Therefore, let me say "Merry Christmas & Happy New Year" to everyone. For those of you who do not celebrate Christmas or the New Year, I simply wish you greetings. For those of you who struggled through the holidays missing loved ones, I grieved with you and thought of and prayed for you throughout the season just a bit more than I do at other times because I know that the days seem void of at least part of your joy with the absence of your loved ones. I know that I cannot even begin to imagine the loss of a child because I look at my beautiful niece and nephew and all the joy they bring to us this time of year and always, and I absolutely cannot imagine not having them with us. Of course the holiday times are difficult for my family as well as those who have been with me awhile know that we lost my dad, grandad and uncle within a 6 week period during November-December 2000. Even still, that is different from losing children and my sincere prayers are always with my friends (and others that I know of) who are in this situation. My mom, my grandma, and my uncle have all lost children, so they understand and out of their grief experiences, I can pray for others who suffer this experience. It is my duty and pleasure to do so. When I say that I love you...those of you who stop in...I mean it. Please don't hesitate to share (publicly on the guestbook or privately--by e-mail or phone 336-250-9175).

As further explanation, I offer that my sincere desire and request that you share specifically with me is an integral part of my current journey as God has taken me "out of commission" to rest and recuperate while we solve some serious issues about how to continue to treat my severe aplastic anemia with the steroids I so desperately need that are, unfortunately, destroying my bones to the point where surgery is now required and will continue to be until we can come up with a better solution. It is a blessing. There is no other way to see it in my opinion. God has been so good to me and I love having the time to enjoy this season of my life where I have time to focus on others while simultaneously focusing on my own healing. Thank you for traveling the journey with me. Perhaps out of this season will finally come a finished narrative work. Stay tuned. Wherever God leads is where I will go and I look forward to new and exciting adventures in this New Year. The best thing about living is that regardless of my external circumstances, I know that the best is yet to come in Christ. Lord Jesus, thank you. There is NO other name under heaven and earth by which (we) can be saved. In the words of THE life manual...

ACTS 4

8 Then Peter, filled with the Holy Spirit, said to them: "Rulers and elders of the people! 9 If we are being called to account today for an act of kindness shown to a cripple and are asked how he was healed, 10 then know this, you and all the people of Israel: It is by the name of Jesus Christ of Nazareth, whom you crucified but whom God raised from the dead, that this man stands before you healed. 11 He is " 'the stone you builders rejected, which has become the capstone.[a]'[b] 12 Salvation is found in no one else, for there is no other name under heaven given to men by which we must be saved."

I guess I should give at least a brief "medical update" before leaving. I am totally wiped out and in need of a visit to Duke to get me feeling better. I'm not "sick" exactly--just this bone marrow failure disease rearing its' "normal" effects. Thankfully, this will be addressed shortly as tomorrow is a clinic day. So it will be a 12 hour day of traveling, poking, prodding, questioning, infusing, transfusing, huffing lethal substances in an attempt to prevent lethal diseases (i.e. pentam) and figuring to try and keep me functioning. If all goes OK, I will be able to come back home until next Monday when I'll go through another day of appointments to address how my right leg is progressing and when we'll have to undertake a similar procedure to fix the same problem on the left. If there's anything of note from clinic, I'll try to update this week. Otherwise, you can look for an update next week after these two major appointments on the 6th & 12th are behind us. Of course, if anything noteworthy changes in the meantime that requires notification or prayer, I'll certainly let you know. I have one prayer request I'll leave for you today for Zach & family -- a fellow warrior family for whom my heart breaks. Praise God for His love and compassion that is truly the only answer for all of us. I love you and will return when the Lord says so. Shalom...

Wednesday, December 17, 2008 12:13 PM EST

Don't faint. Yes, I'm actually updating. I'm so sorry guys. We spent the day in clinic yesterday and I made a huge effort to try to update today for that reason---to let you know how things are. I know it might seem that it would be really easy to update since I'm doing "nothing" all day, but the truth is, I'm not doing "nothing" all day. I'm spending each day still trying to recover...physically, mentally, spiritually, emotionally, financially...it's all very difficult. You'll be happy to know that I am continuing to progress both from a hematological and orthopedic standpoint so praise God for that. I have only been able to get out to church 2 or 3 times since surgery so I'm missing that. I made it last week and hopefully I'll be able to make it again this week. As far as prayer requests go, you Christian warriors know what to pray for so just keep at it. I am praying for you guys too. Specifically pray for my spirits to continually be uplifted as I have to remain a bit isolated. I've gotten used to it with count issues and illness over the years that has required isolation for my best interest. But, I am SO much of a people person that months of it gets difficult for sure. Also continue to pray for pain control. As I am putting incremental weight on my right side at the surgeon's discretion, the pain is once again much more intense and often keeps me from resting well. Otherwise, just pray as the Lord leads in our Jesus name and I know things will continue to work out for HIS GLORY which is my goal and desire no matter how much I must share in His sufferings.

As far as the Christmas holidays go, I absolutely LOVE this time of year. Since I knew I would be disabled this Christmas, I did as much as I could before I went in for surgery. So, I only have a few things left to do and that is likely to be online. I really enjoy going out with my mom during the day. I can take the wheelchair and help with her lists or use an electric cart to get around at the stores while everyone else is at work and it's not too hard or tiring to get around the crowds. I have been able to scoot on my hiney up and down stairs (VERY CAREFULLY) so that enabled me to help mom with the Christmas tree. Our house is two levels, but is a bit unique in that we have 2 upstairs bedrooms that don't require going downstairs to get outside so I've been able to avoid stairs until I got the OK to attempt them from my surgeon. But, our den is downstairs and that's where we put our tree so I was oh so thankful to be able to help mom decorate. Every little milestone counts.

We have been burning up the road back and forth to Duke and are very grateful for the lowering gasoline prices. Since I've had to be there soooo much, we have spent the last several weeks trying to tank me up with everything possible so that perhaps I can get to the first of January without having to go back. It would really be nice to have that full two week break to spend with family members who have already started coming in to town for the holidays. The Family Support Program has also been a HUGE help to us during this very expensive and trying time. So, if you are looking for an end of the year charity, please consider the Duke PBMT Family Support Program . Thanks to all of you for all of your support during this time. Sign away at the guestbook even if I don't update. Sometimes I just can't sit up at the computer for long, but when I can get here, I love to read to see who's been by. Please also know that I continue to lift you all in prayer; especially those of you who are missing your loved ones or facing an empty spot at the table. The sadness of the holidays is not forgotten by me because I live in this world of hem/onc/BMT too. And, I know it could just as easily be my family missing me at the table. Hopefully I'll get back before Christmas. But, if not, enjoy it as best you can and CELEBRATE CHRIST. He is our all in all...ALWAYS...and especially with the Spirit of Christmas that fills our souls right now. Shalom...

Friday, November 7, 2008 9:36 PM EST

Sorry to leave you waiting. Mom and I are at home HOME. We lived in an apartment about 8 minutes from the hospital for several weeks after discharge, sleeping with lines accessed (I, very gratefully have a double lumen port that allows us to run everything we need without peripheral IVs) so we could do the "every day to the hospital for check-up, blood products, lab work and whatever else we found out I needed" from those results. We are still traveling to Durham quite frequently because we choose NOT to be treated locally. All of you who have been in this situation understand why. If you don't, then you have a "Duke like" medical center in your back door. We don't. Of course, there is Baptist, but I have my personal reasons for not wanting to be treated there and Dr. K has her reasons for not wanting me treated there at this time, so to Duke we go with nary a complaint, for as long as they ask us to come. Last counts were:

RBC 9.4 (off the hook til Tuesday--tx @9.0)
PLTS 6.0 (fight to be off hook til Tues--parameter's 5--NOT a joke)
WBC 4.1
ANC 3976 (off the hook til Tuesday-Neulasta SQ/GCSF IV @ ANC = 4000)

So, as you can see, not so much out of the woods on a few. We have also changed a few parameters due to surgery and I am having to be transfused at HGB = 9.0. We were trying to keep platelets at 30, but several weeks at the apartment revealed that literally the only way to do that would be to keep me 8 minutes from the hospital in an apartment forever which really just is not going to work. As long as I am not having profuse bleeding problems, mom and I are NOT moving to Durham to live in an apartment 8 minutes from Duke. I am STILL having bleeding issues and every time I get transfused, I seem to drop. So, we are dealing with that as best we can and praying. We slammed, and I do mean SLAMMED platelets in, helped by a few necessary PT and PTT rechecks for surgery, to get in enough platelets so that the surgery would be on 'GO'. We kept me at a parameter of 75 then 50 with a drip...dropped the drip...dropped to 40...then got into trouble when we dropped to 30. Of course then we tried dropping the Vanco and I got into trouble with that and got an infection so we had to add cipro and of course there's always a big testimony to tell. But, the biggest one is that God pulled me through like He always does. I was never afraid. For other procedures, I can't necessarily say that, but for this one, it was truly handled in a way that I was never afraid. That's a great thing because I have to have the same thing done to the other side so, keep praying for the right side and get geared up to pray for the left when I give you the nod.

No walking or weight bearing for some time yet. But, cards, gifts, pick-me-ups--etc. have been and still are greatly appreciated. I am trying to get to "thank-yous" for everyone. Let me apologize in advance if you have not gotten one yet. It is slow going. But, I will get to you. Those helped most and I'm not even kidding. I know that prayer and kind thoughts got me through this tough time and will get me through the next surgery. I'll try to do better about updating. No weight bearing between the ankle-knee & knee-hip means "not even a laptop". Plus, it is hard to even find the energy to use a laptop. My energy requirements have dropped tremendously, but my mom is feeding me (and I am eating--mostly) 3 meals a day, getting enough rest, getting outside for fresh air and going to see other people (even if it's just in a car) every day. So, things are good. Take care and keep praying to God for me in Jesus name. I love you and do continue to pray for your needs as you make them known to me. I do get your email and guestbook messages every few days even if I don't write so let me know if there's a specific request. As always. Shalom!

Wednesday, October 15, 2008 9:58 PM EDT

Just a quick update for today. I am SOOOOOO tired. I have been working hard on all fronts trying to get out of here. And, of course, my body is attempting to rebel. We just discovered today that I have a urinary tract infection. We are doing all we can to narrow me down and get me on the correct oral meds. Other than that, things are status quo. Mom and I are in bed at the hospital, and no it's NOT making me any worse. I feel ALL of your prayers to God in Jesus name. Keep sending them up!! The new infection is the only "new" thing sort (probable worrisome) of hindering a discharge in the next day or so.

Monday, October 13, 2008 3:40 PM EDT

Here I am again!!! Are you excited to hear from me? If you are, I can definitively say that you are certainly no happier for me to write than I am to be able to write to you. Yippee!! I am making good progress. Actually, the phrases: "I'm not surprised. That lady is tough as nails." , "Khalita, what a great job!", "I heard you were doing a great job.", "Have you been up yet? (My reply: "yes" followed by a list of our checklist) "Oh wow, that's GREAT! I'm VERY PROUD of you, Khalita.", and lastly an "I'm proud of you!" with a wink as Dr. Driscoll was leaving my room after rounds today. All the words of encouragement are helping tremendously. I need to hear them from all sides now.

Popular to what some may think I may/should be feeling so soon after such a major surgery, I am not extremely discouraged. I also don't want to get there so I know how important it is to "tank up" on those needed "big things" offered by those who care for you. Those little words of encouragement and thoughts of kindness mean SO much at a time like this. You just never know how much until you yourself are on the receiving end of a simple, sacrificial act of kindness that brings you to tears. Now that we have a few answers, I will "re-update" the prayer request list appropriately so that you can best get what is most useful to me at this time. Again, thank you all so much for caring and stopping by. It is at times like these that the guestbook becomes a well of encouragement from which we all draw. Now fill mine with some encouragement that is funny, sweet, and just all-around "good for the soul". My detailed medical updates and requests will follow by email. Feel free to email me if you've decided you want to be included and I'll add you to the list. Or, of course, you could just leave a guestbook note asking to be included and receive detailed info that way. I love you all. I realize I'm still a little loopy and redundant so bear with me on that. But, I'm surely lucid enough for conversation, so bring it on. The phone is always off if I need peace & quiet and email I can check when I feel up to it. So, I am waiting with bated breath to hear from you. I love you all. Blessings to Him and by His Grace ALONE...SHALOM...

Friday, October 10, 2008 4:03 PM EDT

SURPRISE!! Here I am with an update already and considering all my body has been through this week this is a small miracle. I am already on solid food as I was begging for Lunch this afternoon so they approved that. I am in considerable pain, but I am getting IV Methadone continuously and IV fentanyl for breakthrough pain. Please consider that I'm still a bit "out of it" when I talk or type so excuse anything that doesn't make sense. This will get better when I've had some decent sleep and we can wean the pain meds considerably. I am in such difficult pain episodes because I cannot have the epidural that most people have for this surgery due to bleeding risk. So, that means we have to do MEGA doses of some other powerful meds like dilaudid (given in rescue doses post-op), methadone & fentanyl (mentioned previously). I was excited I could actually update so I figured I'd do my best even if it didn't make sense :) Bear with me...

We had a bit of a difficult time getting started yesterday morning simply because I'm a special needs patient. The surgeon wanted my platelets at 100K beforehand. As of 9pm Wednesday, they were 7K. We all laughed out loud at that prospect but I made some calls for prayer on that specifically and we worked all night to get them up. At dawn (around 6am) after receiving 6 units throughout the night they were 77K. They decided to take me down to wait in surgery with that number and because there were problems with my PT and PTT (clotting factors) we had time to give another unit which got my platelets to around 90k. So, shile those platelets were running in, we put in an A-line (arterial line), drew another PT & PTT to wait for that to come back to give the OK to go on in to the OR. Since we continued to continuously infuse while in surgery, we likely did get up to 100k for that brief time. God's timing is ALWAYS perfect!

I slept pretty good last night, but had a bout with severe pain for about 2-3 hours. We finally got that under control and I went back to sleep. Physical Therapy has already been by to see me and it hurt badly. But, with a stop in the middle to get some rescue fentanyl I was able to finish up and get a complement from several people on how well I did. I still cannot get out of bed though. That will be something we may try tomorrow. Right now I have air boots on both legs. On my left leg, it inflates and deflates to improve circulation and prevent clots. We can't do that for my right leg yet because of surgery so it has an air boot on it and is wrapped from ankle to knee to hold the lower leg drain in place. The thigh also contains a drain but is only bandaged, not wrapped. Finally, I am also on oxygen. I could not keep my O2 sats up last night and was dropping into the 70s without help. (Normal is 95-100) So, they started me out on 3 liters and I am currently down to 1 liter. That's a definite praise and something to pray for.

Despite the surgery taking longer than expected, everything went well according to what my mom was told by the surgeon. I have PT one more time today and then my work is done. They are going to come sit me up tomorrow and then maybe stand me up and get to the chair the next day. We will find all that out tomorrow as we make a plan as I get better and depending on what my body is able to tolerate. For those of you who don't know, I'm on a specialty care/ICU type unit where we have basically 1:1 or 1:2 nursing at most. Additionally, I am hooked up to all monitor leads (HR, Pulse OX, Resp., BP) that can be seen not only above my bed, but also in the hall by my nurses and docs. That's another reason I feel so blessed to be cared for by this team at Duke. Had I not been able to come here for close monitoring, I would have had to go to the ICU last night to get the kind of care required by a patient who has great potential for serious complications and just had major surgery. So, another praise.

Well, I am tired and am gonna try to take another nap. It's what I've been doing best since yesterday. I will be sending out a list of post-surgery prayer request updates. In the meantime, you can be praying for good physical therapy sessions and any of the items on the old list that still apply (like pain control & no infection, etc.). I love you all, want to thank you for continuing to walk and pray with me. As requested, the address/phone #s are posted at the bottom of this page AND in a previous journal entry so please check in one of those places if you want to send a card. Anything sent must be inorganic. I am not allowed live items such as flowers, fruit & small animals :) due to infection risk. Speaking of cards & calls please dive in with those so I don't get bored and depressed. This is a long haul and hearing from friends/loved ones helps more than you know when you are facing a 6-12 month recovery. And, of course, your prayers to God in Jesus name on my behalf are the most cherished of gifts, so I thank you for all who were, are and will pray to God in Jesus name on my behalf. I am doing the same by praying for you too! PLEASE feel free to send specific prayer requests to me. I love to pray for others with the "down time" God gives me so my ears and heart are open. Love to everyone who's stopped by and PLEASE sign the guestbook so I know who's out there, OK?

THE WISH LIST CAN BE ACCESSED BELOW BY REQUEST:

Wednesday, October 8, 2008 5:20 PM EDT

Well, surprisingly enough, God granted me a free moment during this extremely busy day to come and update you guys. The schedule still stands. I have been to GYN, Ortho & Pre-Op and we are now settled on the Unit. Yippee!! I am exhausted from 2 days of non-stop running from appointment to appointment. Plus, IVIG is not really my best friend and I am having some side effects from that. I had a slight fever today and had to alleviate panic in a few appointments by explaining that it's med side effects and NOT a reason to postpone my surgery. One important piece of additional news is that my hip has actually worsened considerably within a month's time. I was at a stage IIB and today when they did repeat x-rays (which showed nothing last time--it was found by MRI alone) they had to restage me at a IVB1. What that basically means is that we will do the same procedure, it will just be a bit more complicated. But, praise God it was caught before total collapse. That's a definite praise. I am still calm and very much at peace--just ready to get going. I will be the first case in the morning with a start time goal of 7:30am. It will likely be more like 8am depending on labs, etc. I will not be able to update tomorrow. But, I will try to have someone else do it for me even if just by guestbook, so be sure to check there too. I promise to post as soon as I am able. I will post my room number and hospital address on the bottom of the page. Visitors are welcome starting Saturday, but please call first. Add to your prayers control of bleeding. We are starting a platelet drip at midnight, but my counts from yesterday were:

HGB 7.8
PLT 8
WBC 2.3
ANC 1975

No surgeon is gonna want to even touch me with platelets of 8 so we have to get them up and keep them up to prevent complications. I got 2 units of red cells yesterday, but will likely need more of those also. I did not put this on the original prayer list, but it's a concern and I know it will be covered. I have already heard from several people who have printed out the list and have been lifting up the concerns I outlined. THANK YOU. Feel free to share with any Christian and/or church congregation that wants to pray to God in Jesus name on my behalf. That's what will get me through everything. It's brought me this far. He won't leave me. He won't leave any of us who trust in Him. And, I am just so thankful for the peace that surrounds me. I've had several medical staff comment on how calm I am with such a big surgery coming up. Well, the surgery may be big but my God is infinitely bigger and I don't have a thing in the world to fear. I'm glad that shows. I want to please God in every way during this trial and I consider that a step in the right direction. OK friends, time for me to head back to 5214. I love you all and thank you again for walking with me. I will be back to update as soon as I am able. Until then, know that I love you and appreciate you more than words can say. Shalom...

BY REQUEST, WISH LIST CAN BE ACCESSED HERE:

**Note: Cards and anything artificial is appreciated. No live flowers, fruit, etc. due to infection risk--thanks!

Monday, October 6, 2008 9:54 PM EDT

My goodness what a day. I am extremely tired and am about to go to bed as I have a long day tomorrow as well. I've been updating a lot lately so if you've missed the last few entries, you should check the history. This update is really a kind of "last update" until, until. I hope to be able to get back on and let you know the time of the surgery on Thursday, but that will likely just be posted at the very top of the page. Additionally, I will post my room number. To answer last minute questions:

1 - Any cards may be sent to:

Khalita C. Jones
Box 1404
Lexington, NC 27293-1404

Or, you may send them to the hospital. Please keep checking in at the bottom of the page for my hospital address. I will be on 5200, but I won't know my room number until Wednesday afternoon. Again, if you already have my home address, feel free to use that, but I won't be posting it for safety reasons.

2 - Changes in scheduling are as follows:

Pre-Op (12:45 pm) Wednesday
Admission will defintely be on Wednesday afternoon immediately following pre-op. I am spending all day in clinic on Tuesday in order to get "normal" stuff done and then I will return home for one more night in my own bed so that my mom can return with me on Wednesday morning and my car can be left at home as I will not be able to drive it home after discharge (or for quite some time for that matter).

3 - Visitors are definitely welcome. Just call first so we know you want to come by. I will post my phone number along with my room number so check the bottom of the page.

4 - General prayer requests will be posted here but my personal and specific needs and updates will be sent by email to those who have requested to receive them.

That's all I can think of. Thank you again for checking in on me and walking with me. I am still at peace and just ready to "get going" with the surgery. Feel free to send any specific prayer requests my way as I will have plenty of extra time on my hands and I would be honored to spend some of it lifting your special needs to the Lord in a specific way. I will update again as soon as I am able and the Lord brings me here. As always...SHALOM.

BY REQUEST, WISH LIST CAN BE ACCESSED HERE:

Sunday, October 5, 2008 11:13 PM EDT

I am getting excited!! If you think that's strange...oh well, it's no secret that I'm a bit "different". I have even been called "crazy" by some. I don't mind. I admit that I am a fool...a fool for Christ. Today was an awesome day. In Sunday School we talked about the Holy Spirit. We had our church service, at the end of which everyone gathered around me with outstretched hands and lifted me up in prayer. And, it was a communion Sunday so it was the perfect ending to church services for a while.

I am not the least bit afraid or worried about the surgery. That may change come Wednesday or Thursday. But, really, I have prayed for peace and this admission is a bit exciting just because I have the luxury of actually planning for it. Of course, I don't mean planning the details of the stay. That is totally up to God. I just mean having time to prepare myself for a stay in which I know what the main goal is and the steps we are going to take to try and meet those "mini goals" needed to get to the main goal. These kinds of hospital stays are much prefered, by me anyways, to the "fly by the seat of your pants, don't know which way is up or down", kinds of stays.

I am almost cleaned up and packed up. I've never been without the use of either leg for a long time so that will be a new blessing to experience. No, that wasn't a typo. I just choose to see this experience as one in which I can learn more about God and allow Him to use my life for His glory in a different way than He ever has before. I don't look forward to the suffering. But, you suffer with Him, you reign with Him. Gotta go through the first to get to the second and there is NO WAY I am missing out on the second so NO MATTER the precondition, I WILL reign with the Lord. Jesus means everything to me.

I have been a good girl and put together a list for those of you who asked. It includes the schedule, specific prayer requests, needs and a few wants. I only included the wants because I was asked. I have to do what I would want others to do were the situation reversed and that is how I approached this list of information. I will post my room number once I know it. Also, my wish list is already set to go to my address. I will not post it for safety reasons. However, for those of you who already have my addresses (street or P.O. Box) either is fine to use. You may send things to the hospital also. When I am about to be discharged, I will give warning in time for things to get sent to my next address in Durham as I will have to remain there for a period of time yet to be determined.

Thank you all so much for your caring and your prayers. I will post the button for the wish list only to make it easier. Otherwise, those who requested info received a very detailed prayer request list by email. If you didn't ask for it, but want it, you need to email me or post a note on the guestbook by tomorrow evening. After that, I will try to get to checking in, but I can't make any promises due to the medical schedule. Thanks to you all for checking on me and walking with me through this. I will try to update as I am able. Also check the guestbook for updates in case I have to call/email and ask someone else to update that way. I love you, am praying for you and hope to return with at least one more entry before the big day on Thursday. Shalom...

WISH LIST CAN BE ACCESSED BY CLICKING BELOW:

Wednesday, October 1, 2008 3:29 PM EDT

Wow, two updates in one day. If you missed the earlier update, there is important info there so please check the history. In the meantime, I have another prayer request. I need an insurance matter resolved by tomorrow. The sooner the better. So, what better way to address that than the prayers of the saints. It's in situations like this that the power of God becomes so very real. Without His help and intervention all non-believers have is the ability to worry and hope in man's competency. Think of how ridiculous that sounds...hoping in man's competency? NO WAY. I'd much rather trust in God's promises! Now, God can certainly make man competent...but only with God's help can man do anything. So, rather than sitting around worrying and biting my nails, I am going to ask all of you to pray along with me for this issue to be resolved. Thanks so much! Oh, and as for Sue's guestbook entry, (this must be "song day") I also LOVE that song. I included it in a previous journal entry, so I'll just repost it here...

In Christ alone will I glory
Though I could pride myself in battles won
For I�ve been blessed beyond measure
And by His strength alone I�ll overcome
Oh, I could stop and count successes like diamonds in my hands
But those trophies could not equal to the grace by which I stand

[chorus]
In Christ alone, I place my trust
And find my glory in the power of the cross
In every victory, let it be said of me
My source of strength, my source of hope
Is Christ alone

In Christ alone do I glory
For only by His grace I am redeemed
For only His tender mercy
Could reach beyond my weakness to my need
And now I seek no greater honor in just to know Him more
And to count my gains but losses to the glory of my Lord

[chorus]
In Christ alone, I place my trust
And find my glory in the power of the cross
In every victory, let it be said of me
My source of strength, my source of hope
Is Christ alone

When I get enough money to be able to do a streaming site again, I'll start streaming these songs off CDs I have. Until then, just the lyrics will have to do. Unless I can find them on playlist...I'll have to check into that. Ok, gotta run. Keep checking back for updates. I'll post as I have them. Shalom...

Wednesday, October 1, 2008 9:20 AM EDT

...I go to the Rock of my salvation. I go to the stone that the builders rejected. I run to the mountain and the mountain stands by me. When the earth all around is sinkin' sand, on Christ the solid Rock I stand. When I need a shelter, when I need a friend, I go to the Rock...

:) I always like to start the day with praise to my Lord on my lips. While I did thank God for His goodness this morning, I did not yet have a song on my heart. God led me here to check...well, actually, I checked email and that led me here because email produced a medical update I needed to let you know about. Hence, I ended up here and received my 1st "heart song" for today as Becky started one off in her guestbook entry. Thanks Becky! And, thanks Jesus for guiding my steps to supply what I needed for each moment this morning. Singing that song (the chorus of which is above) reminded me of just how much I love to praise God in song and it put another song on my heart...the chorus of which I will leave you with. Before going, please direct your prayers for pre-op to Monday rather than tomorrow. As a matter of fact, I guess I should just go ahead and list appointments for next week so that you can be praying. Of course, these are subject to change, but as it stands I have the following appointmemts scheduled:

Monday (10/6):

Orthopaedics Pre-Op (10:30am)
Ophthalmology (afternoon--Time TBD)

Tuesday (10/7):

MIGS (Minimally Invasive GYN Surgery) (9:30am)- ultrasound & checkup
BMT Clinic (rest of the day/evening)

Wednesday (10/8):

Admitted to 5200 (may happen Tuesday evening)

Thursday (10/9):

Free Vascularized Fibular Graft (FVFG) on Right
Femoral head (Time: TBD)

Friday (10/10):

Physical Therapy Begins

So, there you have it. As I said, it may change. I will have "the list(s)" complete by Friday. So, expect to receive it sometime this weekend if you requested it. If you'd like to request it, there is still time. Leave me a note in the guestbook or email me . Thanks to all of you who are supporting me as I go through this latest trial. And, that's all it is--a very temporary trial...NOTHING compared to what our Lord endured. If He can do that, I can SURELY do this. In fact, BECAUSE He did that ("that" being suffer and overcome), I can do this ("this" being share in His sufferings and overcome). I love you all and will be back when there's an update to give. You are in my prayers as always. And now, that song I promised...

I love to praise Him (I love to praise His name)
I love to praise Him (I love to praise His name)
I love to praise Him (I love to praise His name)
Oh, I love to praise His holy name

He's my Rock
He's my Rock, my Rock, my sword and shield
He's a wheel
He's a wheel, in the middle of a wheel
He will never
He will never, never let me down
He's just a jewel
He's just a jewel that I have found

Oh, Hallelujah
Hallelujah, Hallelujah, I love to praise His name
Glory, Hallelujah
Hallelujah, Hallelujah, I love to praise His name
Oh, Hallelujah
Hallelujah, Hallelujah, I love to praise His name

Oh, I love to praise
Oh, I love to praise
Oh, I love to praise His holy name

That's one of those close your eyes, pat your feet, shut yourself off from the world and just worship with God songs. I love my Jesus. Thank God for salvation. He keeps me ALWAYS. I couldn't ask for more. Be back soon. Shalom!

Sunday, September 28, 2008 1:58 PM EDT

My apologies for the delay in update. Truth be told, I'm just having a hard time right now. I can't really go into everything, but please just continue to pray. Would it confuse you if I also said I'm doing OK? I hope not. I don't intend to confuse. I guess the best thing to say is that I know I am squarely in the palm of God's hand. The hand of peace, sovereignty, strength...the hand that does not change. For that reason, I know that I am fine. I even feel that I am fine. On the other hand, I am kind of discombobulated with a whirlwind of things going on. There have been some insurance issues that I would ask you to pray are resolved so that my surgery can remain on schedule. I am also very tired because pain has been keeping me up at night. So, that likely accounts for some of my feelings of discombobulatedness (yes, that's a word because I used it just now!). Today was a "pulpit day" so I am in post pulpit rest mode. I will update again with more details when I am able. Those of you who know Christ just please continue to lift me up. Of course, I am doing the same for you. You are loved and I am here. Admittedly, I'm a little "hit or miss" when it comes to being "reachable" however, if you NEED me, I will be there because God will make it possible. So, PLEASE do not hesitate to contact me. There is always time for God to fulfill our needs and He will allow me to be there for whomever needs me...I am sure of that. I am still working on the list(s) for surgery time so continue to post in the guestbook or email me if you'd like to be included. Much love all around. And, of course, SHALOM...

Saturday, September 20, 2008 11:25 AM EDT

This is just really short because I promised to update again this week. I'm not up for a long update because I don't feel well. So, if you'll be patient and keep checking in, I hope to have some more details up for you soon. Have a wonderful weekend. Blessings to all of you for stopping in and blessing me. If you have missed details about my surgery or current health status, check the history. Until God brings me back...

Wednesday, September 17, 2008 5:52 PM EDT

Big news. My apologies for those of you who have been locked out for the past week or so. I needed some "quiet time" with just supporters as there were some "not so nice people" offering unsolicited information that was not helpful. And, because I was a bit overwhelmed with upcoming events, I just couldn't deal with the negativity. I'm over that for the moment and have regained some strength. However, if you happen by and find the site password protected, the same login information given to those who previously requested the password will apply. I may need to password protect from time to time to preserve my sanity and emotional state as I deal with the latest issue. And what is that issue, you may ask? Well, for those of you who missed the initial news, you can click here to read the journal history. For those too lazy or in too much of a hurry to do that right now, the short answer is that I need to have surgery very soon. Here's a brief background...

I've had a lot of pain for a couple of months. We were on a hunt for the issue and finally found out that I have AVN bilaterally in my femoral heads (informational/layman links are in the previous entry). It has been staged at IIB which means that I must have surgery now to prevent the need for a more aggressive surgery that would most likely include a total hip replacement in both sides. Due to the fact that I have Severe Aplastic Anemia, this surgery is considered dangerous. I will have to be micromanaged to prevent death from a surgery that most people do without much fuss. As it stands now, my pre-op is on October 2nd and surgery is scheduled for the 9th. I will be admitted several days before and remain until all is under control from a surgical and hematological standpoint. I am looking at 6 months to 1 year of recovery and then a repeat process for the other hip. My right hip will be done first because it is the one that is painful and has further progression.

The procedure I will be having done on both sides is called Free Vascularized Fibular Graft (FVFG) and was pioneered at Duke. Dr. K, of course, is making sure the best in the world take care of me. I don't believe in coincidence. I praise God for allowing this to be uncovered exactly at this time to make me an excellent candidate for this particular type of surgery that was pioneered at Duke specifically for this particular problem and people come here from all over the world to have this done. AVN can present in many ways and in many stages and my problem and staging are all perfect for the Duke procedure. My God is awesome, awesome, awesome. And, again, He gives me the BEST in the world. I trust Him with my every need and He never fails to fulfill it in grandiose and perfect fashion. It just builds my faith more and more and more. How blessed I am to serve such an amazing God. And, speaking of needs, I have several more for you to lift up in prayer and respond as God leads...

I will be inpatient for...some days...don't know how many, then no weight bearing for 6-8 weeks (which basically means bedrest), then tiny, gradual steps toward mobility. That kind of isolation from the world can get very lonely and it's always nice to have stuff to do/people to talk with/visitors to sit with, to keep my mind fixed on Jesus and remind my mind an heart of how much I'm cared for even when I'm isolated. Positive attitude is SO important and I will need support to help me keep it. While I hate to do it, I know when to ask for help. God has been teaching me that lesson and I am trying to learn it. The devil would like to convince me to try and go through it alone. I refuse. As evidence of His desire to surround me with love, God has already led people to start asking what they can do to help me for this long haul. I have been asked to create a wish list and a needs list. If you'd like to receive the link to both or either, simply email me or sign the guestbook and I will send it to you rather than posting it here. That should keep the "misinformed and misunderstood" from negative comments (I hope).

Of course, as always, the most important thing you can do is to pray for me. For those of you serious about wanting to pray specifically with me through this, a prayer list will be included in the email sent out with my wants/needs list as it only makes sense that provision of needs would be a part of the prayer requests. In an attempt to condense what I have to do, it makes it easier for me to create one list that will serve everyone's requests so please simply request the list and the prayer requests will be included. There are some more specifics and things I need to relay about the surgery, process, etc. but this has gotten long and I need to get ready for church tonight. However, feel free to ask any questions you may have (it may be a question I need to ask but have not yet thought of so PLEASE ask away) offer advice if you've been through AVN with yourself or a loved one and wait patiently on my next update. It will come this week--maybe even tomorrow as I still need to tell you about yesterday's clinic marathon. Until I return, SHALOM...and thank you for walking with me through yet another trial. It means more than you can imagine...

P.S. Sign the guestbook (especially if you haven't recently). I need to hear from whomever's here right now so I know who's checking on me so that I can thank God for you by name. And, yes, I admit, your entries make me smile too--I like to smile :)

Sunday, September 7, 2008 10:41 PM EDT

Alright, I know you guys are waiting. So, here's the scoop on me...

I have been experiencing some quite severe pain at times (although, no, I did not really let on how severe the pain was) in my hip for the past few months. We have been trying to figure out what's wrong. For you Duke folks, Debbie (my very favorite NP in the whole wide world...ok so maybe tied with Sue :) and Gil (gotta love Gil!) have been ordering tests and communicating with Dr. K & Dr. Parikh to come up with the best plan. I let it go for a while before even saying anything because I was truly hoping I just hurt it and didn't remember and that it would get better with time. NOT. So, we've been searching and searching and waiting and waiting and wondering and testing. Well, after all that investigation, we have finally reached an answer. Or, should I say, we have finally determined a direction in which we have to proceed to get this pain better. I have avascular necrosis (or AVN for short) of both my hips. The right one is the one that has been painful. It is caused by the long term high dose steroids and lupron I've needed to try and keep the SAA from taking off more than it has. Additionally, there seems to be a right hip effusion and a mass/infiltrative process covering my sacrum, illiac bones and lower lumbar spine.

We are now trying to determine if the latter two findings are related to the AVN or are separate processes caused by something else. So, more investigation. However, regardless of the outcome, we are going to have to intervene in a way that we would not prefer and it will be dangerous. Everything invasive is dangerous when you have SAA. If you remember correctly, I have also been dealing with hemoglobin and platelets that have been a bit low for our liking at times in the past two months (hgb = 4-ish & plts = 8-ish quickly come to mind) which throws an additional wrench into anything we might think about doing to fix said hip problems.
The only permanent/fixative/curative treatment for AVN is surgery of some sort--and there are several options. However, does anyone see a problem with surgery with counts that suck? Not to mention infection risk. BIG SIGH. So, where do we start and what's next, you ask?

Right now, I have a bunch of appointments to get through. I got in to the GYN last week and they switched some meds and want me back within the month for an ultrasound. I need to go to endocrinology to get bone scans done for bone density testing and some other issues that need to be evaluated. And, of course, I need to see orthopedics to try and figure out what we need to do about my hips and in what timeframe. Right now I am on celebrex and methadone for pain control. However, we may have to nix the celebrex as it can sometimes affect platelet function. With plts in the single digits & teens with looming surgery, we really can't risk it. Am I worried? Not really. TIRED would be a more accurate description. Actually, I guess I need to rephrase that. The truth is...

I am not worried about my health. While I don't want to go through a painful surgery and have to deal with all the risks and hospital time that brings (I had to spend over 2 weeks inpatient just to get wisdom teeth removed so this likely won't be a short stay) I am very concerned about financial issues. PLEASE PUT THIS AT THE TOP OF YOUR PRAYER LIST AS I DON'T WANT TO BE WORRIED ABOUT THIS, BUT IT KEEPS CREEPING BACK IN AND IS REALLY WEIGHING ME DOWN RIGHT NOW. I just don't know how ends are going to meet financially. I needed money for sooo many things, including some meds I should be taking but am not because there is just no money, like YESTERDAY...or really more like MONTHS AGO. This is part of the reason I password protected my site. I've had some not so nice people say things about what I feel is just honesty. I need financial help. I need people to pray for me for strength to get through all this--physically, emotionally and spiritually. I believe in posting my needs. And, those needs should be posted before people who will be supportive.

I need a swift kick in the butt now and again just like anyone else. In fact, I give myself lots of swift kicks all the time. I know I need more faith. I need to be stronger. I need not complain because things could be so much worse. I know all that and I receive that kind of rebuke because I know what God's Word says and am receptive to it. I will STAY STRONG. I have no choice because I am a warrior of the Most High God and I believe He will deliver me. I am also guarding my heart because it is the wellspring of life (Proverbs 4:23). I have the wisdom to know that I just can't deal with negativity at the moment. I need my prayer warriors to rally around me and support me. I need people to fundraise on my behalf or make donations. This will be a long, expensive haul with money I don't have. Of course, most of you have walked in shoes similar to mine or know someone who has so I am somewhat "preaching to the choir".

Please just know if you are in this with me right now, I consider you among the closest to my heart because I know that you will support me however you can. Feel free to call me at 336 250 9175 or email me . I need to talk right now...and not necessarily about medical stuff. I just need to talk so as not to isolate myself from the world and start to feel alone. The devil would like nothing more than that and I REFUSE to let that happen because I know that I am very loved. Thank you for loving me and for listening. I will be updating often as things will be rapidly changing as we move toward a solution so check back. And, thank you so much for caring. It means the world to me. For those who may be worried after reading this update...honestly, if the situation were reversed, I'd probably be worried too. But, I know my Jesus and we can get through this together. There are so many things to be thankful for in the midst of this storm. No one forget that, ok? God is an awesome God and He has the answers. We will trust Him together. For my needs and yours. I am praying for you as always. That will never cease to be the case. I love you all so much. Blessings for a wonderful Monday and I will update again ASAP.

Saturday, August 30, 2008 12:20 AM EDT

I don't want to leave anyone in the dark. Please just know that if you asked for the password, you will receive it. I'm not trying to keep anyone out who wants to pray and check on me. Sometimes it just becomes necessary to "close the borders" so to speak and this is one of those times. Please don't think it's because you haven't signed the guestbook :) I'll get the password out over the weekend and update ASAP after that. Blessings all around. You are all loved and prayed for very much.

Wednesday, August 27, 2008 1:34 AM EDT

The site will be password protected by the end of the week--Friday evening most likely. Sorry for the short message and notice. I will post more once the site is password protected. If you would like the password, please just email me (or leave a guestbook note) and I'll get it to you. I kindly ask that you do not share the password. If someone misses this note and wants to check on me, please have them email me themselves to ask for it. It was a looooong Duke Tuesday (hence this very late & probably a bit incoherent entry) and I will post a detailed update (medical and otherwise) after I password protect the site. Blessings and love to everyone who has helped me through many dark days rejoiced with me through all the everyday joy Jesus provides. Hopefully, the password protection will only need to be short-lived. Sorry to be so vague, but that is part of the reason for the need to password protect. So, those of you on pins and needles, just pray and you'll get an update by the weekend. Love to everyone & blessings in the name of the Lord Jesus Christ!

Monday, August 18, 2008 9:18 AM EDT

Update 9:59 AM. I just got a phone call after posting this update that we had a death in our family this morning. So, please keep that in your prayers as well.

Update 10:27 AM. After checking websites this morning, I see that Sofia passed away last night. Please continue your prayers for her family. They need them so much now. My heart is broken as well as I will miss Sofia's eyes and smile the most.

Well, suffice it to say that I have kind of been in "give up" mode for a little while. I'm not ashamed to admit it. I am human. Praise God that I am not "only human". I never use that phrase because I have Jesus living inside me and that gives me the strength to go on during the times when my flesh feels that I just cannot fight another battle. My body is tired. The Word--meaning the bible--says that the spirit is willing but the body is weak. Both of mine have been weak lately. I won't let that stop me. I was riding in the car with my mom yesterday and we were listening to a Christian CD which was giving me what my spirit needed. It had been raining on and off and all of a sudden a rainbow appeared. I giggled and pointed like a little girl---because I am. I am God's little girl and it brought tears to my eyes to see Him put that in the sky just for me at the time that I needed it. For those of you who may not be Christian or who may be unfamiliar with the promise of God and the significance of the rainbow...OR for those of you fellow believers who are also drowning in rainwater and need to be reminded of what the rainbow means for us, I refer you to Genesis 9:8-17...

8 Then God said to Noah and to his sons with him: 9 "I now establish my covenant with you and with your descendants after you 10 and with every living creature that was with you�the birds, the livestock and all the wild animals, all those that came out of the ark with you�every living creature on earth. 11 I establish my covenant with you: Never again will all life be cut off by the waters of a flood; never again will there be a flood to destroy the earth."

12 And God said, "This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: 13 I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. 14 Whenever I bring clouds over the earth and the rainbow appears in the clouds, 15 I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. 16 Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth."

17 So God said to Noah, "This is the sign of the covenant I have established between me and all life on the earth."

An exegetical (fancy "breaking down the scripture" word) explanation will be posted below, but the significance of reading the bible for a believer comes from the personal experience of relating what God says to your own life. Christianity is a RELATIONSHIP. Anyone can be religious. Relationships, however, are an entirely different matter. I have to talk to God and work things out with Him because we are together forever. And with the rainbow He placed in the sky for me yesterday, He reminded me of several things I need to remember right now:

1 - Rainbows only come when there are clouds around. I am thankful for the clouds that allow rainbows.

2 - These storms in my life...the ones producing the torrential rains that make me feel that I'm drowning--they can't destroy me. They can only get me wet.

3 - I have a promise from God that He is on my side and deliverance is on its way no matter how I feel because I can SEE His love for me WRITTEN IN THE SKY.

4 - I am so glad that when I go through these hard times, it can be something like that--a rainbow following a storm--that can give me hope and assurance. I don't have to conjure anything. God gives me what I need at the perfect time as I ask and trust Him to--WHAT AN AMAZING GOD that He would create, care for, respond and speak to me (and you) personally! WOW!

Ok, so you prayer warriors will want to know how to pray specifically for me. Before I ask for prayer, I want to ask you to pray for my little buddy Sofia . We spent a long time on the unit together and have been through a lot together and she is having a hard time. We don't know if God is calling her home or if this is another bump on her journey but I ask your sincere prayers for my little friend and her wonderful family whom I love DEARLY. Now, as for me, please pray for (besides the obvious closer, deeper relationship with God I need to get through the current difficulties):

1 - Direction for the pain with my right leg.
2 - Direction for my declining counts (especially RBCs).
3 - Uplifted spirits.
4 - Strength for each moment.

Thank you for stopping by. I will end with the in depth analysis of God's meaning of the rainbow. May there be a rainbow in your clouds/storm if you are in need of one. I will be thinking of and praying for you.

God's covenant by the rainbow.

As the old world was ruined, to be a monument of justice, so this world remains to this day a monument of mercy. But sin, that drowned the old world, will burn this. Articles of agreement among men are sealed, that what is promised may be the more solemn, and the doing of what is covenanted the more sure to mutual satisfaction. The seal of this covenant was the rainbow, which, it is likely, was seen in the clouds before, but was never a seal of the covenant till now it was made so.

The rainbow appears when we have most reason to fear the rain prevailing; God then shows this seal of the promise, that it shall not prevail. The thicker the cloud, the brighter the bow in the cloud. Thus, as threatening afflictions abound, encouraging consolations much more abound. The rainbow is the reflection of the beams of the sun shining upon or through the drops of rain: all the glory of the seals of the covenant are derived from Christ, the Sun of righteousness. And he will shed a glory on the tears of his saints. A bow speaks terror, but this has neither string nor arrow; and a bow alone will do little hurt. It is a bow, but it is directed upward, not toward the earth; for the seals of the covenant were intended to comfort, not to terrify. As God looks upon the bow, that he may remember the covenant, so should we, that we may be mindful of the covenant with faith and thankfulness. Without revelation this gracious assurance could not be known; and without faith it can be of no
use to us; and thus it is as to the still greater dangers to which all are exposed, and as to the new covenant with its blessings. (Ge 9:18-23)

Wednesday, August 6, 2008 3:20 PM EDT

Well...time flies...whether you're having fun or not. In my case, I've been experiencing both ends of the spectrum. Not much about my health has been fun lately. But, all of it has been a blessed time. I don't want to stay here too long today so I'm going to update on the health stuff and come back for the rest later as I feel it's more important to give you updated info that requires prayer. I had to make an emergency visit to Duke last week, so I will start there...

My hgb was 4.7. No, that is not a typo. On top of that I had a fever of 102.2 with no known origin. That's never good in someone without a decent white count. So, we are currently on a quest to determine what the heck is going on. I've been having severe pain in my right leg. So much so that even when I try to hide it and am with people who don't know, they were saying "ARE YOU LIMPING??!!?? WHY ARE YOU LIMPING??!!??". Unfortunately, "I don't know" doesn't go over too well as an answer to why my health is declining. I have had to give that same answer to "WHY ARE YOU BREATHING SO HARD? WHY ARE YOU SO PALE. ARE YOU OK, YOU LOOK VERY SICK? WHY DO YOU HAVE A FEVER? WHY ARE YOU SWEATING WHEN THE THERMOSTAT IS ON 65? WHY ARE YOU FREEZING WHEN IT'S 98 DEGREES OUTSIDE?". So, that has been my life for the past several weeks. Mind you, my life has not been miserable during this time. I've just felt bad. Life is great because I'm alive, have family & friends who love me, have the best medical team in the world caring for me and I serve and belong to a God who knows exactly what is going on and exactly what to do about it. So, for now, we are seeking Him and looking medically at just about every angle to try and figure out why I just don't have any blood cells and am having unexplained fevers. My latest sets of counts were as follows:

HGB 9.6
HCT 28
RBC 3.13
PLT 15
WBC 2.7
ANC 1672

HGB 4.7
HCT 15
RBC 1.49
PLT 18
WBC 2.7
ANC 1753

HGB 4.8
HCT 15
RBC 1.52
PLT 12
WBC 0.5
ANC 223

HGB 8.1
HCT 25
RBC 2.65
PLT 8
WBC 5.1
ANC 4029

So, as you can see, we are having some difficulties. I am having fevers off and on so we have been doing IV ceftriaxone and neulasta for that (hence the upped WBC/ANC). Of course, it could also be up due to infection. But, hey, at least that means I'm making white cells in response to infection and that's always a good thing when your main problem is that your marrow likes to go AWOL :) I have had 4 units of blood in the past 5 days so hopefully, I'm out of the woods with my HGB/HCT. It feels like it. I'm no longer almost passing out and experiencing the deafening sound of my own heartbeat in my ears every time I'm upright. The fever, while still transient, seems to be under better control and I am definitely feeling better on that front. Platelets are low...and again we are holding those and holding our breath hoping that we do not have to transfuse those in light of the fact that I've needed transfusions of so many other things during this little episode. The last mystery is my painful leg. I am already on methadone and tylenol is not really good on a regular basis for several reasons so we took a chance and put me on some celebrex. That has helped, but we still don't know what's causing the pain. Could be anything from an unknown injury to internal bleeding.

So, there you have it. We are trying desperately to fix me. Thankfully, I am home now. I have appointments left and right as we work on this saga. But I am home trying to get some much needed rest. Finally, I guess I should mention that God knows exactly what I need. So, if you are worried/concerned and know Jesus, I suggest doing exactly what I am doing and pray for answers to all these question marks. I am not worried, but I am weary. However, I am also very thankful to be feeling better as I was feeling really, really bad for several days. I will do my best to keep you posted. God is so good all the time and He will deliver me from this just as He has showed up on my behalf all my life. Please help me in whatever way He leads you: prayerfully (pray in agreement for/with me), financially (give money), conversationally (call or write), thoughtfully (cards or gifts). I am NOT asking for anything specific. I do know that people who care desire to help and many have asked what to do so those are just suggestions. As always, prayer is the biggest request and you can pray specifically using this update.

We have not forgotten about fundraising as it is desperately needed. I'm just in no position to do anything like that at this time. If anyone is, however, you can leave a message on the guestbook or email Alison Haddock and she will let you know how you can help with fundraising until I am better and more able to give more input into a fundraising effort. Thanks for stopping by and for all that you do. I love you all and continue to lift you up to the Lord in prayer. If you need me, let me know. I will do what I can. You are not a bother, you are a blessing...each of you. I'll update again as soon as I am able to or if something drastic or emergent happens, I'll do a "quickie" or have someone get on and leave a note so that you can be praying immediately. Shalom friends...

Thursday, July 3, 2008 4:20 PM EDT

Thanks to everyone for signing the guestbook. It really helps me to feel loved. This will be short and I will try to do a more detailed update later. I had clinic Tuesday and counts were:

HGB 8.1 (PRBCs given--2 units)
PLT 8 (platelets held along with our breath!)
WBC 1.9
ANC 875 (neulasta given)

So, it was once again a long day. I was gone from 6am - midnight. I had to take my mom for some minor surgery that morning & she couldn't drive afterwards. So, I got her home, asked my aunt & grandmother to be there with her and then drove myself to Duke. I haven't been feeling all that well the past couple of weeks and was glad to be able to try to get some answers. In addition to the low counts, I have some evidence of liver disease in the bloodwork still. Nothing bad, but something we are watching as iron overload can cause major problems with organs so that's always a consideration since I am WAAAAAAAAAAY overloaded. My last Ferritin was over 4000 and normal is less than 150 I believe, so, yeah, that's a problem. It is also why I am in need of financial help. Added funds will make it possible for me to get on the medication I need to lower my Ferritin--Exjade. Like all the other "keep me alive" meds--it's very expensive.

As for my current status: I'm very swollen with fluid overload and had some problems since we had to give me two units of blood plus my IVIG when I was already fluid overloaded. I'm supposed to get platelets below 10k also, but I could not have tolerated anymore fluid so we skipped those since I'm not actively bleeding and planned to just hope I'll do ok at 8k until we can get the fluid issue under control. Even with limiting the fluid to the "necessary" infusions only, I was in clinic until 10pm with us trying to get my BP down to at least 130/90 (from 152/110 at its highest). We didn't quite get there (to 130/90) but with some sublingual nifedipine and a little time, we started to see a downward trend so they finally let me go. I am still experiencing the swelling in my legs/feet/ankles & fingers along with severe headaches & dizziness. Accompanied by the normal IVIG issues (headache, fever, nausea) things are a bit rocky right now. They had me up two of the BP meds I'm on (Enalapril & Diuril) and we are watching weight and BP for signs of worsening fluid overload. I'm not worried at this point. It's kinda par for the course. I still don't feel well though and will be very glad when we make some progress and I'm feeling better. Of course, I am thankful to be feeling this way right now because two years ago at this time, I felt a whole lot worse as I was on 5200 starting 14 day ATG and feeling too awful to even get out of bed some days. I'm a loooong way from that and it makes me smile at God and His faithfulness.

So, friends, I hope my this little update gives you some things you can pray for until I update again with further details. I plan to do it soon as we have a fundraising idea to work on and we want to get info to those of you who have asked to help. Thank you all so much for your prayers and your caring. Please know that you are always in my thoughts and prayers too. I love you all very much. Sign in and let me know you were here and I will get back with an update on my health status and the fundraiser just as soon as I can. Shalom...

Saturday, June 21, 2008 12:23 PM EDT

In my most recent entry, I thanked God for bringing me to the place where I am now as I reflected on where I was 2 years ago today. Even now, it brings tears to my eyes as I reflect on the fact that I could have died. Of course, I also could have died yesterday when I drove down the street. The vast difference is, the trip down the road is not a battle that you feel actively engaged in fighting. While you understand that driving is a danger, it simply does not "feel" the same. As I lay in that hospital bed on 5200, the danger is real. Everything about it feels real. The pain feels real. The loneliness is real. The uncertainty, the fear, the hope, the exhaustion...it's all very real. And the reality of the battle makes the victory all the more sweet. I do thank God every time I get home safely. But, when I get home safely after months away in/at a hospital, the thanks I give is sweeter.

I know God is with me everywhere I go. I feel Him. And when I can't feel Him, all I need to do is look around at the words that He has spoken in His word. Those words are manifest in His creation and they never fail to ring true. I see a mother with a child and remember the miracle of birth. I see people working and remember God's promise of provision. I see computerized everything and praise God for the brains that created that technology. It's all from Him. Of course, the way that some of these things are used does not glorify God. But, that has an awful lot to do with the user and nothing to do with the Creator. It is wise to note that anything that can be used for good can also be used for evil. This is why we cannot blame God for the evil that occurs in this world. Certainly God allows things to happen. And, yes, sometimes He causes things to happen. But, the best way to look at God is as a perfect parent--because that's what He is.

Parents must let their children experience life in order to prepare them for living it. God does the same. They must sometimes let a child fall before the learn the danger of not listening--sometimes verbal cues do not do the job. God is no different. But, anytime that parent sees that the child is about to do something that will completely or permanently destroy them, that loving parent steps in and provides instruction and an alternative choice. The difference is, the Earthly parent can't always be completely sure about their judgments. God's judgment, however, never fails. It is perfect. He is perfect. And if we are going through something that seems so incredibly difficult that we feel it will destroy us, we must trust God that if that thing truly will destroy us, God will step right in and offer help where we most need it. Otherwise, we can expect that what we are experiencing is truly something that is building our character for the next step in the journey.

I trust God fully. He has never let me remain in a situation that would destroy me. I know because I am not destroyed. He has never forsaken me in a time of need. I know because I continue to need, yet I am not forsaken. He has never stopped loving me. I know because I am loved. Sometimes I would rather throw away my 20 meds, not take that trip to Duke, eat whatever I want and do whatever I want. However, what I know I want more is to please God and change the world for the better. The former is not compatible with the latter. And, for that reason, I get back on when I fall off. I get back up when I'm knocked down. And, I keep on fighting a battle I'd often rather give up. All because I do NOT intend to let a destructible disease destroy my dreams. Nothing is tougher than God. And, He's driving this ship. I will stick with Him until the end. I see no other option if I intend to win. And, believe me, I INTEND TO WIN.

Thursday, June 19, 2008 7:32 PM EDT

Hello everyone! I am quite proud of myself for updating more frequently again. Of course, I really do just come here when the Lord leads me to. But, it's been a long time since He has had me update on a regular basis and it makes me feel more connected with you guys when I'm here more. I couldn't let this time of the year go by without doing a little reminiscing. Two years ago today, I was at the beginning of an extremely long hospital stay (and subsequent daily outpatient visits for months) fighting for my life. Look how far I've come. Actually, I should say "look how far WE'VE come" because I certainly would not be here without the support of everyone who has invested in my life in one way or another. Obviously, I am still experiencing some health difficulties. I am transfusion dependent and have some problems due to iron overload. But, I am a far cry from a HGB of 3.2 and major sepsis with 2 infections. Thank you Lord for bringing me to this place. And, I'm going to leave it at that tonight. I'm simply grateful that the Lord has allowed me to continue to serve Him on this side of Heaven so that more people can spend eternity with Him and other loved ones as He uses me in whatever way He chooses for His glory. Easy? NEVER. Worth it? ALWAYS. Shalom and check back soon for some important and exciting details about what's in store for me next medically and personally. God is SO GOOD!!!

P.S. Sign in, sign in, sign in. It's important for me to hear from you in the guestbook for the next two months. I'll reveal why soon, but PLEASE sign in if you come by. Or, if you don't want to leave a public note, please e-mail me . Thanks in advance!

Monday, June 16, 2008 12:54 PM EDT

Hi friends. Sorry for the delay in updating. As I stated, last week was a Duke week and after having a full weekend of activity then a full Tuesday at Duke I wasn't able to get an update on before now. My cousins had a surprise birthday party for my Aunt Julie from June 6th-8th in Richmond, VA. With blessings from Dr. K to skip a Tuesday, I was able to attend. However, it really took a lot out of me since I am transfusion dependent and skipping a week also meant going an extra week without the blood or meds that are helping to keep me here. I (nor my medical team) would have put myself in danger, but there's a reason we have a set infusion schedule and I was dragging and not feeling all that well. Despite that, however, I had a wonderful time celebrating my aunt's birthday with my family. It was a huge surprise that went off very well. She didn't suspect a thing and we had lots of fun. Let me update you on all that is going on since I haven't really done that in a while. Look for the section headers if you're too busy/don't want to read the whole entry--I know it's long :)

FAMILY VALUES...

Our extended family pledged long ago that we would not see each other only on "funeral or serious illness occasions". Of course we see immediate family more than occasionally, but for those who live farther away, it makes it hard for us to really visit each other as much as we should/need to. For that reason we have events like this whenever possible accompanied by a yearly Family Reunion that travels around the United States to different places where family is located. The family closest to the chosen destination serves as the host family. We go to a hotel/convention center and spend Thursday - Sunday doing various activities that are centered around sightseeing and doing some fun things together as a family.

FAMILY REUNION...

On Saturday night we have a huge formal banquet and awards dinner where we celebrate family accomplishments, births & deaths for the year and enjoy a catered meal together while sharing good food and family stories. Afterwards, we have a talent show with children and adults providing entertainment and the night ends with an organizational meeting to hammer out the next year's reunion host, location and details. This is a diversion that I did not intend to write about for this entry, but I am thinking that God had me put it here because there are other families that need to make this a priority so that they are not meeting up only on stressful, unplanned occasions. Life is short. Spend time with the ones you love...DELIBERATELY. You never know when they will have to leave this place. Insert Tim Russert.

MOMMY & ME...

My mom and I cried yesterday morning as we watched "Meet the Press" WITHOUT Tim Russert. As for many others, it was, for us, a Sunday morning ritual just like church. I thought of his son, Luke, and the emptiness I could relate to having lost my father shortly after college graduation. It made me ever more grateful for the year I had to spend with my own dad while I was sick following my college years. For those that don't know, I had to move back in with my parents and rest for a year before attending graduate school due to the toll my studies at Duke had on my health. My dad took an early retirement and boy did we have fun just spending time together that year--1999. He took me to all my doctor's appointments, fed me, did my laundry. It brings tears to my eyes even now.

SUNDAY'S SERVICE...

Because this past week was the week of our church's annual organizational conference, we did not have service this Sunday. (It is the only Sunday out of the calendar year that this occurs as they re-assign pastors.) I did not have to attend because my appointment as an associate pastor took place at our district conference a few weeks ago. The annual conference takes care of placing head pastors only. My mom and I took flags to the church cemetery where my uncle, grandfather & great-grandfather are buried. We then picked up my grandmother who rode with us to the VA cemetery where my dad is buried to place a flag on his grave. I miss them all...tremendously. Thankfully, they have all given me the best gift besides my own salvation--their salvation--which means I get to live with them for eternity. The thought of never having to say a heart-wrenching goodbye ever again soothes my soul in a way that is indescribable.

CLINIC...

As for my health...we have some things to discuss. If you'll recall, I mentioned that I was exhausted the past two weeks. Actually, this past week, I have been feeling less exhausted and more sick. Even today, I am still struggling with nausea, headache & low grade fever. But, this is a "normal" sick that happens after IV meds so just uncomfortable rather than alarming. In clinic on the 10th, I had the wonderful pleasure of seeing Jake (fellow SAA warrior) and Cindy (his mom) at clinic. That was a treat because they are very dear to me but we have been missing each other in clinic so it was nice to see them. As a bonus, they got to meet my mommy because she took me this time. I am having insurance issues so they made me sign a form that I am responsible for everything because they currently have no record that I have insurance. Great. Good thing God knows I need health insurance. He'll provide. In the meantime, keep praying with me in Jesus name on that issue. It's important. My mom got hugs from folks who had not seen her in a while. It makes me feel so good to know they feel like we're family. Numbers* were:

HGB 8.0 (PRBCs every 2-4 weeks)
PLT 11 (praying we can stay above 10 w/no bleeding & avoid transfusing)
ANC 1514 (Neulasta every 10-21 days)
WBC 2.1 (Neulasta)

*Note: These are only the "main" abnormal values. We check more than this, but these tell the most info about how I'm doing.

Another concern this time was that my LFTs (Liver Function Tests--AST & ALT) were elevated. That means my liver is not functioning properly. Most likely it is a result of organ damage from multiple transfusions. We don't have a choice but to keep transfusing me and that is why I am trying to get on the new medication I have been speaking about (see past entries for details). So, until I can get on it, we wait and pray. My next scheduled appointment is on July 1st. I will try to update again before then. But, if I don't get back, you can expect an update shortly after my next visit. Of course you all know I love you tremendously and am praying for you.

FRIENDS OF KHALITA FUND

Before I close, my friends wanted me to mention fundraising, so I am being coereced here as I know they will just post in the guestbook if I don't do it here on the main page and then the message will end up here anyways, so I am being obedient :) If you can help with fundraising, please email me today through the end of June instead of Alison as she has something else pressing to attend to for the next two weeks. She will be taking over again when she completes her other obligations, so you can feel free to email her starting July 1. Just be advised that she may take a little while to get back to you. There is a fundraising effort that is in the works and we need volunteers to help. It requires no money--just a little time. So, let us hear from you if you're interested, OK? I'd like to leave you with some food for thought that comes up constantly as I live with this life threatening illness and the blessings that result. It is raw, unpolished and not meant as literary material. It's simply the musings of my heart taken from a handwritten journal and transferred here for my readers in order to illustrate what things this journey has instilled. In the case of this next piece, the lesson God has given is learning the importance of delivering specific prayers in specific ways...

I DO NOT PRAY
by Khalita

I do not pray never to go to the hospital again.That might mean I'm dead and would not need to go. I pray instead for my stays, inpatient or out, to be as short as is possible to get me functional and relatively healthy again.

The hospital isn't "home", but it isn't a grave either.

I do not pray never to have pain or feel sick. That might mean that something wrong goes unnoticed.I pray instead for any new pain/sickness to be quickly defined and treated successfully once identified.

Pain and sickness are discomforts that remind me I'm alive and point in advance to problems that need fixing before they get out of hand.

I do not pray for loved ones not to die. That might mean they remain here in agony and without quality of life with only suffering to watch & experience. I pray instead that they may stay only until they can no longer enjoy life here.

The only thing worse than the death of a loved one is watching a loved one continuously suffer with no joy or relief.

I do not pray for a life free from trouble. Trouble is inevitable and praying for it to cease would mean I didn't believe God when He promised us trouble in this life. I pray instead to avoid the troubles that I can and that His grace would be sufficient for those unavoidable difficulties life brings.

And it IS. HE IS.

"In this world you will have trouble. But, take heart, I have overcome the world!"

"My grace is sufficient for you because my power is made perfect in your weakness."

Wednesday, June 4, 2008 10:40 PM EDT

Time for another update. I don't intend to write much, but we'll see where this goes. I can say that I only intend to write a brief update. Sometimes that doesn't always happen, but here goes...

Every time I think of myself as a licensed minister, complete with robe and credentials, I LAUGH . It's just hilarious to me. And, while it may not be a surprise because I knew God was calling me into full time ministry in 1997, I'm definitely not the picture that probably pops into the heads of most when they think of what a minister of the Gospel of Christ is. I remember the time just after God started me on this path (with my knowledge--of course He has known since before forever) He helped me understand two scriptures that would be VERY important to what He would have me represent as His called servant:

1 - Romans 15:14

14 I myself am convinced, my brothers, that you yourselves are full of goodness, complete in knowledge and competent to instruct one another.

2 - II Corinthians 3:4-6

4 Such confidence as this is ours through Christ before God. 5 Not that we are competent in ourselves to claim anything for ourselves, but our competence comes from God. 6 He has made us competent as ministers of a new covenant�not of the letter but of the Spirit; for the letter kills, but the Spirit gives life.

You see, the first thing I had to do was try to convince God that He was making a mistake because I didn't feel competent to be "ministering officially" to other people. He quickly taught me that this was exactly the point :) I've been saved since shortly after diagnosis because that's really what led me to the Lord, but I never even once considered ministry until college. And, lo and behold, Junior Year--BAMM!! It's a long story from there, but that's where it started. And, just as I knew that I was being called to full time ministry, I also knew it would be a ministry of a unique variety simply because of the path that the Lord has laid out for me with all the medical experience, combined with being a Christian, combined with academic gifting, combined with being a woman. I can't explain how all that relates but suffice it to say that many people see Christians as uneducated people who could not possibly be academic and still believe...and a WOMAN at that...a 5'3" little black girl...yeah well, God does what He wants to now doesn't He? I'm still the same old me that God made me and that's one of the things I absolutely love about this whole process. I feel NO pressure to change (except for the growth that ALL Christians should want to experience). That's an amazing feeling.

My concentration will continue to be on Children and Youth as I really establish a complete service just for them that will be attended in combination with our regular service as a complementary way to teach them how to bridge age-appropriate worship activities and responsibilities from childhood to adulthood. Additionally, I will add to the "extra-Sunday" meetings and activities for them to make sure that they are getting all the tools they need throughout the year to be in the world but not of it. I will be placed at our local church for this year. Will I get paid? I don't care. Would I like to? Yes. Does it matter if they give me money? No. God knows my needs and if I need to get paid, He will make that possible. If not, He will provide another way to make ends meet because I am walking in His will. That's all that ultimately matters. "I have never seen the righteous forsaken or his children begging bread", "Seek ye first the kingdom of God and His righteousness...And all these things shall be added unto you", alleu...alleluiah...Hahaha. Actually I just started to throw out scriptures that came to mind and in the middle God allowed that song to rise in my Spirit so I thought I'd just sing that scripture for you. Did you like my serenade? I digress. But, more seriously, I do believe that those words spoken by my ALL IN ALL are true and I cling to them in this difficult time. To God be ALL the glory.

For those of you who are continuing to try to help me financially, you can continue to e-mail Alison to get on board trying to help with fundraising. If she doesn't get right back to you, don't worry. She WILL. I promise. Thanks to those who have helped, are helping and would like to help but cannot. Thanks also to those who stopped in, but refuse to help. You stopped by and that means you care. God knows what He intends for all of us. I encourage those who are unable to help but have the desire. God sees your heart so please do not fret. Do what I do and just continually ask Him to show you what you can do to help and then leave your heart receptive for the answer. He may show you what you can give or He may give you an idea or someone else to ask. We are all in the same boat and those who most want to give are the ones in the SAME position as me. I just know I have to ask, trust God to provide and receive what He gives. So DON'T FEEL BADLY ABOUT IT. If we all keep praying God will answer us. I can PROMISE that. Until God brings me back, know that you are in my thoughts and prayers as always. Shalom...

P.S. I was able to get clinic postponed for a week to help with some of the stress so you'll get a medical update complete with numbers (and any changes we should discuss) later next week :)

Saturday, May 31, 2008 6:56 PM EDT

Time for another update. I am guessing no one has signed the guestbook because of the message Alison put on there. If that's the case, no need to refrain. I've placed that entry on the main page (which is now the first entry in the history) and it will be there permanently as of this entry. I'm very thankful for someone to offer to do that on my behalf. I absolutely HATE asking for or receiving help. However, above what I like or dislike, I am obedient to my Lord. I have learned how blessed it has been to give in the past. So, I must swallow my pride and remind myself that it is indeed more blessed to give than to receive and allow others the opportunity to receive blessings from giving just as I have been allowed to in the past. I leave this current situation in HIS hands knowing that He is fully faithful to do what He promised. Mary and Eleasha, THANK YOU. I do not know how things are going on Alison's end as she is going to contact me at a later time to let me know, I say THANK YOU in advance. For those of you who have given in the past, I say THANK YOU. For those of you who cannot give and are praying, I say THANK YOU. For those of you who will not give and are praying, I say THANK YOU. For those of you who cannot or will not give and are NOT praying, I say THANK YOU. For those of you who do not care, I say THANK YOU. I sincerely thank EVERYONE who has stopped by and is reading here from the bottom of my heart.

For those of you who may not understand the previous paragraph, I simply offer these words from my ultimate source of hope:

I Thessalonians 5

14 And we urge you, brothers, warn those who are idle, encourage the timid, help the weak, be patient with everyone. 15 Make sure that nobody pays back wrong for wrong, but always try to be kind to each other and to everyone else.

16 Be joyful always; 17 pray continually; 18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

I still do not know how things are going to be provided for, but this I know--I serve Jehovah Jireh and He has all my needs taken care of in whatever way He so choose. I have to continually remind myself that these incredible medical bills that are cumulative over 28 years of dealing with this are beyond my means but not His. Yes, I get discouraged. Yes, I get scared. Yes, I get frustrated. But, referring to all the different types of people I know stop by, I fully realize that only God knows everyone's situation and He will guide people to do what He wants them to do. I hold no grudge or ill will/thoughts, etc. over those who do not give, do not pray or do not believe as I do. I am simply grateful for everyone God has placed around me to give to and learn from and I am truly thankful for EVERYONE who stops by here to check on me because it means they care in whatever way they are able to. That means so much.

As for how I am doing with everything...Last week on Thursday, I had the equivalent of a meltdown crying out to God in a "David way" uncontrollably, absolutely pleading for the Lord to intervene with giant sobs and tears and wailing that came from a place so deep within my soul that there was no way I was able to stop. And then, I left it in His hands once again realizing that I just have to believe. That's what I do. I am His child. There is no other way. I know people love me. I know that I have given when I can as much as I can. I know that He knows what I need and exactly when I need it even if that does NOT comply with what I, or the doctors, or anyone else wants. So, in His arms I will stay. Waiting...

And, last but not least, as far as health goes, I am hanging in there. I just wanted to update the page and let you guys know to please start signing the guestbook again. The sentiment of Alison's message has been received and will be carried on and read by those who need to see it and those whom God has called to respond to it. In the meantime, I feel lonely not hearing from anyone. :) And, while I am certainly content in the arms of God, I do love hearing from people who stop by in support of me and my journey. Keep stopping by and keep signing in. I will continue to lift you up in prayer and want you to know that I appreciate every gesture through this website.

Oh, and by the way, as of yesterday, I am a fully licensed minister. I began the official licensure process with a sermon in front of a board from our church's officiating body on February 10th. I received it yesterday after completing a grueling course of tasks & tests and am so very grateful to God to allow me to get to this place. Please rejoice with me and pray for me as I complete my credentials to be added to our worldwide body of churches. I will take this part slowly. It consists of more tasks and tests. For the moment I am governed and under the authority of our District and State Conferences. Regardless, I am very happy and would invite you to rejoice with me. I didn't want to say anything here until I knew it was for sure, but thanks to those of you who knew in advance and have been praying for me this whole time. Blessings to everyone in Christ. I'll be back when God brings me back.

Wednesday, May 21, 2008 10:13 AM EDT

Another update so soon? Yes. I told you that this would likely be a time of more frequent updates. There is just a great deal going on and I need to keep my prayer warriors updated. I read my guestbook last night and it brought tears to my eyes. I have shared with many of you the desire for prayers geared toward physical, emotional, spiritual and financial issues. Thank you for being so faithful to lift me up to the Lord. Your prayers have brought to fruition an effort to help me in a tangible manner at this time. If you've said even one prayer for me then consider yourself a participant in the effort to bring this about. Rejoice with me. This whole situation is extremely humbling and I absolutely HATE needing help. However, one of the things God has taught me throughout this 28 year experience dealing with a life-threatening illness is that pride often has to be swallowed as we allow the parts of the body of Christ to do their work. So, while it is so hard for me to do, in obedience to my Lord, I will accept the assistance that the He provides in whatever way He chooses to provide as I give thanks to Him for being faithful to meet ALL my needs. I ask that those who know Jesus continue to pray for me in His name. If, in praying, your heart is touched to participate further, then please read the following information left on the guestbook by my dear friend Alison, and respond as the Lord leads:

If you are reading this guestbook, and you:

love Khalita as much as our family has for 7 years,

follow her journey regularly,

or stopped by for the first time today and were moved by her words

if you are touched by her undying faith and tremendous love of the Lord,

have prayed for her throughout her struggles physically and financially

If you want to give back to a person who continously gives of her time, energy and prayers to many of you,

Then I am asking that you contact me via email at
alisonhaddock@charter.net and let me know that you want to contribute to the "Friends of Khalita" Fund. I will be taking in donations for Khalita as she is needing to start new medications THIS WEEK, and is unable to cover the costs at this time. This money would also be helpful in filling her gas tank to be able to travel to and from Duke for treatment. If you have any gas cards, that would be great too.

Having been through a cancer diagnosis and BMT with our daughter, I know how financially draining it can be...it has taken us YEARS to recover from the financial upheaval of 2 1/2 years of treatment. It really took its toll. I cannot even fathom how difficult it is for Khalita since she has been dealing with these issues for a LONG time. It is hard enough to go through the physical battle, but to be dealing with good 'ol insurance and money issues on top of it, well you all can imagine the stress. Not to mention that it is not good for her physically to be stressed mentally.
PLease contact me and let me know if you can help..
GOD BLESS YOU ALL!!!

Mom to Angel Alexandria , Hunter, Hayden, Addison and Harrison

The sponsoring organization is one started on behalf of Alexandria and can be visited by clicking on the link below.
Alexandria's Angels Organization

You may email Alison Haddock for any further information or to help. I will be back soon with another health update as there have been new developments once again. God bless everyone who stops, reads, prays and helps in any other way. I love you all and am lifting you in prayer in the name of Jesus as always. Shalom...

Wednesday, May 14, 2008 10:01 AM EDT

Happy post-clinic day to everyone. Another treatment down. I also enjoyed seeing Tim & Nancy who I have not seen in 2 years and Sofia, my 5200 neighbor from Summer 2006. This life truly is like a family reunion because we've all been through so much together. It was a very loooong day as clinic days usually are, but I was very thankful to be able to come home after the day was over. I ended up getting home around 11pm. I am feeling sick. This is normal. I'm just thankful that I don't have to deal with a body full of holes since I now have a double lumen port that gives me plenty of IV access very quickly. It really is such a stress lifted off my previous days of 10 IV sticks and concerns over needing IV access quickly and not being able to get any. I am still very transfusion dependent. However, as I have been trying to say (to myself and others) this is "treatable". In our hem/onc/bmt world, treatable is wonderful because there are soooo many situations that we can get into that are not treatable. That may seem amazing in today's wonderful world of technology, but it is true. Some things we can do nothing about. So, the fact that we even have a clear cut answer as to what we can do to fix the low counts is a plus. A less clear problem is what to do about my low platelets. Thankfully, for now we are not having serious bleeding issues despite very low counts. Speaking of, I guess I should post the "majors" for those interested...

HGB 7.?
PLT 14
WBC 2.2
ANC 1700

Not bad. Back to the platelet issue; that is more of a problem than red cells. This is especially true for someone in my situation who may have to transplant at some point as a last resort type option. For reasons too complicated to get into, I can't get indefinite platelet transfusions due to alloimmunization. So, my parameter is 10k for transfusion and we pray. I am on Neulasta for the WBC and as you can see, it is at least keeping me out of neutropenic territory although nowhere near normal. It's normal for me and considering that I have not had to be hospitalized for infection in over a year, that seems to be working for now. I'm going to cut it off here. I am in pain and sick from meds. Thankfully, I am not as exhausted due to the blood transfusion, but IVIG still wipes me out so they kind of cancel each other out for the first week. You can aim your prayers for health in that direction. Please, please also pray for my finances. That is a major source of stress for me right now and I don't need to worry about that. However, it's easier said than done and I have learned to ask for help. HELP!! :)

Since there is so much going on, I will likely be updating more often for the next little while. I will soon be starting Exjade--DONNA:)--to counteract PRBC transfusion iron overload issues. My ferritin is almost 5000k. The high end of normal is 150. Not good. But, again, treatable. Thanks for stopping by. You are in my thoughts and prayers as always. I'll be back when God brings me back. Blessings all around!

Tuesday, May 6, 2008 8:17 PM EDT

Jesus loves me this I know, for the bible tells me so. Little ones to Him belong. They are weak but HE IS STRONG...Boy am I glad that He is my strength. More specifically, His joy is my strength. Nehemiah 8:10 says so and so does my experience with this very difficult thing we refer to as life. My apologies for taking so long to update. My excuse? Life is difficult. It is difficult medically because I am experiencing strange and unidentifiable symptoms that make me feel not so great on top of the not so great feelings that accompany the SAA the plethora of drugs to treat both disease and side effects of side effects of necessary supportive medications. It is difficult financially because I cannot afford everything and don't know where the money is going to come from to make ends meet. It is difficult emotionally dealing with a life threatening illness currently accompanied by the uncertainty of both undiagnosed symptoms and lack of funds. Above all, however, is the undeniable fact that God loves me completely and more than I can ever imagine. He sent His Son to die in my place so that I might live eternally. And, MAJOR BONUS, He has promised to provide ALL of my needs according to His riches in glory. For those unaware, that's A LOT of riches! So, while I do not know why I am feeling bad lately or exactly how my financial needs will be provided for, I do know that joy in the Lord will make me strong and give me the peace that I need to wait on Him. Thank you for waiting on me to update. That's it in a nutshell. For those looking for a bit more detail, well...

...My dad's birthday recently passed, Mother's Day is coming, etc. etc. There are just those times when you miss the ones you've lost terribly and my heart has been aching for my earthly daddy recently. Know that my Heavenly Daddy has been filling that void as needed also as I allow Him to put my hurt in perspective and use the each experience to bring him glory. I went to the Rainbow of Heroes Walk last weekend to honor those with whom I've bonded over the years as part of the PBMT family at Duke. Clearly not all of us are still on this side of eternity, so that's emotional too. Just many, many things that make life seem overwhelming at times. And, as mentioned, not feeling well and not knowing why is always a challenge so that adds to any of the "normal" life stressors we face. Because I am so closely followed medically and am very aware of my body, we are just watching for now and I report anything that seems "serious" rather than just "uncomfortable". Prayerfully, God will soon reveal what is going on with my body. I have complete faith that if anything needs "fixin'" He will let us know what it is and how to fix it. So, that's it and that's all for now.

What I need from you guys is whatever help our precious Lord and Savior leads you to offer me. I know that with a family of believers around the world, collective prayers of the saints will deliver me as they always have. I continue to pray for God to help me focus on today. As I do, He has never failed to provide what I need for THIS DAY. So, there is no reason for me to believe He will ever stop providing for each day as it comes. Tomorrow has enough trouble of its own and I WILL NOT WORRY about it. For that perspective I am grateful. There are so many people who experience life as I do and those who are in much worse situations. I am SO glad that I do not live a life like the ones of those without hope. How miserable that would be. God's word tells me, and my personal experience certainly concurs, that I possess a living hope that does not disappoint. What a blessing. Just like you--thank you ALL for being a blessing to me. Of course I am thankful for the believers who will read this and respond to what the Lord reveals that they can do to help. But, those who are non-believers also stopped by to see how I am and to offer the words of encouragement they know from their experiences. I am thankful for EVERY contact with EVERY person. Thank you for stopping by. I'll try to update sooner next time. Clinic is next Tuesday again so it's my goal to provide a detailed medical update at that time. Until God brings me back here, know that I am lifting you in prayer and thanking God for blessing me with you. Shalom.

Wednesday, March 19, 2008 10:52 AM EDT

Many thanks to "Di" from Australia. You can all thank her for this update. I don't usually do updates in this manner, but today I decided I'd update if I had a new guestbook entry since the last time I checked. Actually, now that I think about it, I guess I should take that back. I have, at times, not seen any guestbook entries and figured people just didn't need to hear any new info because no one was signing in. That's not the case now, but I just picked that arbitrary determinant to indicate the necessity of an update for my readers. So, thanks Di. Sincerely, I thank you for taking the time to sign in all the way from "Down Under".

Medically, I am sick and have been with some kind of really bad respiratory something or other for the past couple of weeks. I have now had to have a blood transfusion at least every 3 weeks for the past 6 months, which makes me completely transfusion dependent for the first time since the HUGE BATTLE of 2006 and leaves us trying to figure out the best way to do chelation therapy as I am WELL over the ferritin limit for transfusional iron overload. Last counts were:

HGB 8.4
WBC 2.1
ANC 1265
PLT 13

We are trying to keep me from being at the hospital so much so if I am anywhere near 8 on my HGB on IVIG Tuesday (every 3rd Tuesday currently), we go ahead and transfuse to keep me from dropping to 5-6 by trying to push it 2-3 more weeks. I am dropping about a gram a week provided there is no excess bleeding. If I bleed I go lower. Platelets we are trying to hold off transfusing until 10. That's not always possible but we are doing pretty good with that goal in the respect that we are dealing basically with menstrual bleeding, nose bleeds and bruises rather than any "serious" bleeds. Of course, in perspective, all of this is serious because I have a life-threatening disease. But, within that realm, everything is relative and we are fairly stable right now and just trying to figure out how to keep status quo with what we have. At some point, protocol will have to change. But, for now, we are giving Neulasta for ANC < 4000, blood & IVIG every 3 weeks, pentamidine every 4-6 weeks & platelets below 10k. We are still working with GYN to try and control menstrual bleeding and playing with chelation and cholesterol medication considerations to counteract these side effects from transfusion and immunosuppressive therapy respectively (steroids & FK can make cholesterol wacky high FYI). And, of course, we continue with my gazillion oral meds at home daily...

WARNING: Because I use this journal to help myself keep medical records in addition to "general" journaling, you may want to skip this next part regarding the plethora of meds I'm currently on. It is really just for my records rather than for your reading. But, I also know that all of us are "info seekers" on this medical journey, so if you're interested, by all means, follow along on the medicine train :)

Immunosuppressants:

Imuran (q48hrs)
Prednisone (q24hrs/AM)
Tacrolimus/FK506 (q12hrs)

Meds to counteract GI side effects from immunosuppressants & IVIG:

Prilosec (q12hrs)
Benadryl (PRN q4-6hrs)
Phenergan (q4-6hrs PRN)
Zofran (PRN q4-6hrs)
Scopolamine (PRN q72hrs)

Meds for steroid insanity:

Lexapro (q12hrs)
Buspar (q24hrs@noon)
Lunesta (q24hrs PRN/PM)

Meds to help moderate to severe bone/joint pain caused by steroids & Neulasta:

Methadone (q12hrs)
Tylenol (q4-6hrs PRN)

Prophylaxis for infection:

Acyclovir (q12hrs), viral
Diflucan (q12hrs), fungal
Zithromax/Levaquin (q24hrs intermittently), bacterial

Meds to control bleeding:

Ovcon 50 w/ no placebo week(q24 hrs/PM)
Amicar (q8hrs PRN)

Supplements depleted from immunosuppression & drugs:

Folic Acid (q24hrs)
Magnesium (q8hrs)
One-a-Day Women's (q12hrs)
Tums/Calcium (q8hrs)

Meds to control fluid overload/high BP from steroids & transfusions:

Diuril (q12hrs)
Enalapril (q12hrs)

Now back to our regularly scheduled programming:

As I took that day's portion of all the aforementioned AM meds, and pondered all of these things, knowing (basically) what was in store for the day last Tuesday, God gave me the boost I needed. I'll leave you with that story...

I had clinic last Tuesday. Before leaving to make the ~1.5-2hr drive, I turned the television on in an attempt to catch a little morning news. Much to my surprise and pleasure, it was just as a segment on my beloved Dr. K was airing on the Today Show on NBC. I know I have bragged about Dr. K on here numerous times in the past and I intend to do it again today. Folks, if ever a Dr. was (and is) amazing, it is her. We do not always get along, but that is the sign of a healthy relationship. You disagree to make each other stronger and better. Dr. K allows her experiences with her patients to make her a better person and a better doctor. That is the reason that she continues to make medical history year after year. Later in the week I sent her an email just thanking her on behalf of all of us who have benefited from being directly under her care. Truly, there is nothing like it and every time I walk into the doors at Duke, there is a gratitude that washes over me amid all the grief, anticipation, fear, excitement, dread and peace that are all a part of the serious, chronic or acute, illness experience. This time, and I say "this time" because Dr. K is constantly in the media for something or other. A camera crew is literally never far away. This time she transplanted a kid, Dallas, with Cerebral Palsy with UCB stem cells. The result, 5 days later, he said "Mama" for the first time at 5 years old. All of us have a story to tell about how she has given us hope where there seemed to be none. She is a constant reminder for my own life that if you aren't doing controversial work, you aren't changing lives. I try to remember that with every experience of opposition I face. It truly helps. And, the impact, even that day in clinic was amazing as I heard the office was continuously fielding phone calls about her work with UCB and CP. Amazing, amazing woman.

I am sorry for those who have been unable to benefit from her contributions to the world. They are nothing short of miraculous for so many even outside the realm of the Duke world as she revolutionized medicine by discovering the precious value of UCB stem cells that would otherwise be discarded. Think of how many lives that has changed...from both ends. All of a sudden, an unwanted pregnancy carried to term can be lifesaving as the UCB stem cells are used as a match to save someone's life. That originally unwanted pregnancy becomes life to more than one individual. God uses us ALL people--we only need give Him the opportunity.

Blessings to all who pray, read, send items and simply listen. Sign in if you have a chance. I really like to hear from those who stop in to check on me. And, of course, I like to pray for you by name. I haven't said much about work or financial things recently, but prayers are still very much needed in these areas. And, of course, know that I am checking your sites and continually lifting you up in prayer as the Lord leads me. I will be back when He brings me back. Happy Holy Week and Happy Easter. How amazing it is to serve a Risen Savior. I couldn't breathe without Him...

Thursday, February 28, 2008 6:11 PM EST

Sorry. I feel like I say that a lot (TWO WORDS--can you tell I'm an educator frustrated with reading "alot"--grrr) but, alas, I am indeed sorry every time I say it. While I do update when God tells me I HAVE to, which is why I'm here today, I do feel remorse for not updating "on the fly" (a.k.a., when I could but am not compelled by the Lord that it is NECESSARY) as often as I'm sure some of you would like to know how things are going. You know, in this world of...well, long term illness (for lack of a better designation) it just gets...LONG. Sometimes, there's (not theres, their's or theirs--yes, I get this all the time as well--drives me nuttIER) just nothing much to say that hasn't already been said. Or, in terms of my lack of recent updates, I just haven't had the strength to update. Things are very, very difficult at the moment. So, I can only ask for your prayers yet again.

Now, because I know the different personalities of those God has placed around me, let me temper that cry for support (for the sake of my "mommies" out there) by saying that I will be fine and will come out on the other side of life's most recent trials better. BUT, right now it is hard and for those of you who have been following me for a while, you know that I'm just not afraid to "tell it like it is". I am a Christian, full of faith, fully reliant on my Father who is sufficient for all things in all situations. But, undeniably, I am walking through a valley right now. I felt you needed to know the truth, and there you have it. Know that smiles and laughter still fill my life along with the tears that fall. Blessings still abound even on the darkest days. The verse that comes to mind to leave you with is this...

12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.

Everyone knows Philippians 4:13 (look it up if you don't!) but context is OH SO IMPORTANT. Thus, I leave you with this verse. It is true. And the very writing, or typing, as it were, of this verse, keeping in mind the journey of my brother Paul, I FULLY realize I have very limited understanding of what it means...Paul was REALLY HUNGRY and REALLY IN WANT. I can't make that claim. I can only claim what is the truth. In my human brokenness, I can remember being "hungry", but never HUNGRY. We are ALWAYS in want because we have desires beyond our current state that keep us "pressing toward the goal", but I am NEVER ALONE because I am saved and Jesus FULLY understands EVERY experience I am having. That makes me the richest person in the world. That's why I can be content in the dark times...and I am.

Thank you to those of you who, without prompting, have taken time to send things to cheer me with cards, hugs, gifts--those are always so appreciated. I hate to list names for fear of offending someone, but I have in the past when the Lord has led me to and Monica, the Lord led me to just post your name this time for what you have done for me over the years. The most recent contact was greatly appreciated and I love and appreciate you so much. Those gifts of others, no matter how big or small are SO appreciated as well, so please consider yourself thanked. After 30 years of making connections, I simply cannot send out personal notes to everyone but I will tell you that as time goes by, being remembered makes me continually appreciative of those who encourage me in my ongoing battles. I also continue to appreciate all the unspoken prayers for me that I know go up. For anyone who hasn't been faithfully praying...haven't we all fallen into that category at some point? I simply ask that you start today sending prayers up for me again. Know that I will do the same for you. I love you guys and will get back here when the Lord brings me back.

Monday, January 28, 2008 5:08 PM EST

Please don't faint. I know this update is loooooong overdue and I apologize. Please remember what I've said before. If you get too worried, just call or text me. I don't mind. I hate to worry (because it doesn't please God) and I don't want my loved ones (cyberfriends included) to sit and wait and worry about me. I guess I should tell you that this probably (you never know what God will have you say) isn't going to be very long and what I write will reveal why. But, thanks for stopping by in concern. I thank those who left messages most of all. Just FYI, when we don't update for a long time (meaning all of us who are walking this grueling illness road) it means 1 of 2 things: 1 - We are trying to enjoy every good moment because we don't know how we'll feel or whether we'll be admitted in the next hour, or 2 - There is so much going on physically and/or mentally and/or spiritually and/or emotionally and/or "E" (all of the above). In either case, guestbook signings are crucial. It lets us know we aren't forgotten no matter how we're doing. For those of you who didn't or couldn't sign, I understand. Just don't be a lurker and NEVER sign :) Ok, so with that little tidbit out of the way...

Yippee, Yippee, Yippee. Today marks 1 year since I have had to be inpatient!!! It almost brings tears to my eyes because I fought sooo hard after spending the better part of 4 months (not consecutively) in or at the hospital daily. I don't believe in jinxes (as in I don't believe saying that will land me in the hospital anytime soon just because I said I hadn't been inpatient for so long), I believe in God and HE gave me the break I needed from that. I was seriously about to go nuts last time I had to be admitted. Until you've literally LIVED at the hospital, you have no idea. Now, of course, I'm still in clinic all the time, but I'll take that. So, CELEBRATE WITH ME. And keep praying!!!

Now for the update:

I am SOOOO looking forward (no this is not a typo or sarcasm) to going to clinic tomorrow after spending the better part of the last 10 days feeling like I was going to pass out constantly, and spending the last 2 months trying to get rid of a recurring respiratory isssue. My counts are low. My guess for HGB is 6's; the others it's hard to guess because I have weirdo cells that do their own thing...or don't, as it were...in no kind of predictable pattern when it comes to symptoms. I can always feel the nausea, headaches, shortness of breath, paleness etc. from the low reds, but the other two lines, it's hard to tell. Sometimes a higher platelet count can cause bruising/bleeding more than a lower one for me depending on how well the cells are functioning, not just that they are there. I've had 0 (no this is not a typo either---my plts have been a big fat ZERO several times) and not been bleeding and had 35 and having nosebleeds & bruising. Of course it's been a LONG time since we've hit even 25 so, as I said--we'll see. And, WBC can fluctuate in a variety of manners (high due to infection but also can be low due to infection), throw in growth factors & you have a bonafide mess. So we just have to try and put 2 and 2 together when it comes to what those mean and what to do. So, we will see. I've become a lot more transfusion dependent over the past several months. Of course, with SAA, severe transfusion dependency always begs the question of when/if to transplant or try another drug therapy protocol--which we have to make up in my case. If you know my history, a transplant would be so detrimentally complicated due to all the hundreds and hundreds (literally) of transfusions I've had over the years, so this is NOT as cut and dry in my situation. But, I'm in the best hands possible...the hands of a God who has blessed me with the best medical team anywhere and I DARE anyone to deny that. When I was reading a friend's update the other day, I remember when they first arrived at Duke for transplant of their younger son. We talked in the waiting room and it turned out he also had a bone marrow failure disease (AMT for those wondering about the technicalities). Anyways, on her latest update she noted that they were there on their 7-year post...I cannot even believe that!! She commented on the Tuesday wait she was experiencing and this was her comment (I don't think she'll mind):

...We have been granted a reprieve. Actually, we are waiting for affirmation of that reprieve, as we patiently wait for the results of Austin's tests. All of his tests are complete and we are waiting simply to see the dr. It's usually a long wait. We have remained in the lobby until 7pm and later. We will wait again today. I wonder how it feels to be Dr. K? To be so important? That people will travel from all points of the globe to see you and wait countless hours...and have cameras and magazine people follow you around? That's our Dr. K. She's brilliant. She's also the person who saved Austin's life. So we will wait. And be blessed by her existence and her knowledge...

I could not have said that better. I truly believe I am under the best care and would not want it to be any other way. Do we get tired of and frustrated with waiting? Yes. It can be a REALLY long day after getting meds, etc. But, once you get her in there, she makes you feel as though you are her ONLY concern. And, that makes waiting your least concern. We would all wait as long as it takes to see the woman we thank constantly for saving our lives in some cases, and trying until the end to save those who are waiting for us in heaven now. There is SUCH a security brought about the opportunity to be in the care of a world expert physician who has revolutionized the available transplants for those of us warriors with no match as well as leading trials and creating medications and ideas to help us fight. I can't even describe it. All I know is that I don't believe in coincidences. It was divine how God led us to Dr. K. I'll have to share that later though because this already too long and I'm tired. So, please just keep praying and I'll be back as soon as I can after clinic to update. I love you guys and please don't hesitate to call of me if need be.

Monday, December 17, 2007 7:40 PM EST

I must say that I am LOVING this new found freedom in just clicking the "UPDATE JOURNAL" button without so much as a flinch about not "reproofreading" my previous entries. Before anyone responds, let me just readily admit, that I am well aware that this is an illness. I'm so comfortable with it in so many different ways what's one more right? At least I do get to blame this one on someone else. Unequivocally, this is the fault of our mother the teacher of "language arts" that quite often responded with phrases such as "behind that preposition you just used at the end of your sentence". Gotta love it. Having started the blame game, I see no reason to stop. Therefore, admittedly, I do tend to assign random blame for different things to different people depending on what the ailment is and what kind of mood I'm in. Everything has to be someone's fault right? Quite honestly, this is a "fun thing" I do at clinic in order to get through the often 12-plus hour days there. I find an attending, NP, clinic nurse, float nurse, late nurse, NA and often some other random staff member I feel like picking on and blame everything that goes wrong that on each of them. One blunder per person. Tee Hee! I'm such old hat at all this stuff, we just all laugh. My tubing for my lovely (yes, I am being SO sarcastic) 20-30 minute jaunt in the "tent of fun" (where I get to inhale 10 mins of albuterol prep you for your next fun experience inhaling deeply on this solution tasting of chewed up asprin under this plastic tent during which no one else can enter the room because it's dangerous to breathe.) came FLYING off and pentam, pentam everywhere--blowing blowing, but NOT in my lungs. Ever try getting help quickly while in the pentam tent. DON'T. Hahaha See, I told you. Lovely. That fiasco was then conveniently blamed on Wendy. Her fault! She was my primary. However, Julianne, quickly to the rescue fixed it...and agreed wholeheartedly with my assessment of Wendy being a weakling when putting my pentam kit together.

I had to call Julianne back in AGAIN, when I had the broken bed issue. All you Duke people know that Julianne can fix broken beds in a single bound!!! Other people were blamed for various other things throughout the day at my discretion. See how fun it is to have the ability to just blame everyone else but yourself ;) The humor may be missed on some of you but I can almost see the head nodding and hear the chuckles from other "hospital families" who become more acquainted with Mr. Murphy than most people can EVER imagine. You GOTTA laugh and have fun to stay sane.

On a more serious note, my deeply caring mother, in an attempt to give me a break from doing all the driving back and forth, has taken some time out of her life to basically just help care for me and my grandmother (both of us really just need minimal help most of the time) while taking a bit of time away from her public service to the educational community on an every day basis. So it was nice to have her there (for the most part--worried mother syndrome struck at the end of the day when my BP decided to take a hike to 153/116). I have been through a HECK of a hard time the past 18 months having been in a more intense battle to live than has been necessary in a while and my grandma, while doing great for 88, obviously has some needs here and there that it's easier to have a younger person take care of.

Thankfully, I also am able to help more after my brush with death when a truck decided they wanted to be where I was and proceeded to run me off the road into a telephone pole...and then left the scene. You just have to pray for people like this. So, I ask you to do just that. As I mentioned a few updates ago where I share some of the details, I should have been seriously injured or dead to look at my car. But, I walked away with little more than some deep bruising due to platelets of 13 and being a bit angry that NO ONE stopped to see if I was alive or needed help. Pray for all those people too. When I told my best friend of the ordeal, she commented that "God just has a whole ARMY of angels surrounding you wherever you go". I do not disagree. The positives coming out of this were the ability to share what was truly a miracle considering the status of my health and the (non) injuries I sustained with simple bleeding in the form of deep bruising. I now have a car that's a cinch for my grandma to get in and out of (my other car was smaller) so now I get to spend more quality time out and about with her taking her where she needs to go when she is unable to drive. God ALWAYS brings blessing out of tragedy. We just have to have our eyes focused on Him.

Lastly, I guess I should update you on a serious note as to how my health is going. Tuesday, I got "the regular" (sounds like a common restaurant order doesn't it?) and some blood. Unfortunately, blood is NOT supposed to be a "regular" for me at this time, but my body is having trouble holding on to my counts and I've had to get blood EVERY time for the past 3-4 visits for HGBs in the 5-range, 7-range then mid 8 range w/ a 4-week/extended break in the future resulting in a transfusion to keep me from dropping back to the 5-range by next time. Last counts were:

HGB 8.5
WBC 2.1
ANC 1565
PLT 15

I didn't get platelets as we are really worried about antibody trouble/alloimmunization at this point, but I had to get the blood. I'm not scheduled for IV treatment again until January 8th and I did NOT want to risk coming back in the next 14 day period, have something go wrong with infusions and end up in the hospital over the holidays. I have spent enough holidays inpatient. Even 1 is too many (but if we HAVE to, we HAVE to). The last 1 I was inpatient was MLK day and before that July 4th. Those aren't "HUGE" holidays in the minds of most, but I LOVE spending time with my family and enjoying our traditions. I was so distraught last summer when I had to beg to even get to leave the unit (until tward the end of my stay) much less the hospital and I missed our family reunion. It scarred me for a LONG time. Of course, everyone video taped and pictured but it was at my brother's and I REALLY wanted to be there to help do some special things we all had planned. That summer, I was FINALLY allowed out and ended up having a summer vacation of a 3-day visit home & to my bro's. BEST vacation I've ever had--hands down!! So, bottom line is my counts could be holding better. I am going to the GYN to consult with them and we are going to try and do something to keep my HGB more stable. This is par for the course. Not fun, but not a terrible surprise after all these years of fighting. Gotta roll with it. Sometimes that's easier than others. For now, I'm doing ok on the mental/emotional side. I'll let you know when I'm not. In the meantime, please continue to pray that this and some other, smaller, bumps in the road lately are just that and we will be able to resolve everything quickly and effectively enough for me to enjoy this most special holiday (next to Easter, that is) at home enjoying time with friends and family.

That's all for now folks. I intend to get another entry out before Christmas. I'll have to talk with God and see if that's what He also intends. If so, I will get myself back here for a Christmas update. On the slight possibility that I may not get back to update for one reason or another, have a wonderful time doing whatever you do to celebrate the season of spreading love and grace to everyone around you. Shalom...

Sunday, December 9, 2007 9:34 PM EST

I had absolutely no intention of updating today. However, I have long ago learned that God is not much interested in what WE feel is "good" timing. He is FAR more interested in teaching us the ultimate perfection of HIS timing. That very reason is why I tried to stop promising a new update at a particular time and began saying "when HE brings/leads me back". And, I certainly try to be faithful to that...coming back when HE leads me here. And, so, here I sit tonight. As always, I apologize for any typos/errors that may have been in the last entry that were not corrected before this post. But, as is usual when I sit down to update, I'm tired and don't really feel like looking for typos before I type a new entry. I spend a great deal of time trying to semi-proofread the entries before I post them, but I know I don't catch all the errors. I like to look at this journal as a way for me not to dwell on perfection in instances where it does not cause time to stop if I make a grammatical error. (If you did not catch the sarcasm, simply re-read the previous few sentences. For those who are too lazy to do so...suffice it to say I DO realize the world won't stop due to typos, but I don't like to produce things that don't exude excellence...does it show much?)

I had a rather interesting day today. It was one of those days that I had about 2 hours where I just could NOT stop crying. Gotta love those. Needless to say, I am NOT afraid of tears. And, I'm so glad that I'm not. A journey with extended, serious illness tends to teach you that. If you wait until an alone or private moment to express sincere emotion, it likely won't often happen. As a result, you end up expressing emotion on God's schedule rather than one that the world would dictate is "appropriate". I rather like that. I think it shows courage. How many of you are unafraid to express the most extreme sadness or joy in front of whomever may be watching? It's a lesson learned on this journey if you allow God to teach it to you. And, since a young age, it is one I've been able to enjoy. However, I will say that a great deal of time is spent trying to explain what is happening so that people who are afraid of emotions will not make fools of themselves by trying to fix something they cannot possibly understand. Soooo, in my blubberingnessness today during church...on the way to church, before church and during church, I simply let God have His way and took the opportunity to explain the unexplainable by way of the Holy Spirit in the form of a testimony about God's love and grace. The simple explanation is that God has been SO GOOD to me. I explained just a few of the things that were on my heart and expressed joy at my ability to simply get up in front of tons of people and just praise God for what He's done and to assure people that there was no "newly revealed" life-changing news to share. You know, you become one of "the watched" when people know you're in an ongoing battle with a formidable enemy. The support is necessary. The difficulty often lies in wanting to have "private time" when it's simply not possible with God using you so publicly. So, you have to learn to embrace every moment and realize that whatever God provides at that moment is just what EVERYONE most needs at that time. It is the beauty and strength that comes with each moment that gives the grace to endure and the peace that passes all understanding. That is my prayer for you tonight. PEACE. I have that because I have Jesus. Every time a storm of life rages, and no matter how difficult things become. I know that I can wait in the middle of the storm, for however long it takes, for a Jesus that I KNOW, at just the perfect time, during the perfect storm will say...PEACE! BE STILL! How amazing He is, and how grateful I am for salvation! I will be back when HE brings me back. Shalom...

P.S. I've been in a quiet sort of time lately, but I'm not sad...just pensive. So, I haven't been big on communication except with very close family members and my closest friends. To my extended CB/internet and Christian family around the globe, please know I will be in touch as I can and that you NEVER leave my thoughts and prayers. I will be at clinic on Tuesday and then delivering some things to the unit later in December so I will try to catch up with my Duke family then. I love you ALL very dearly and I want you to know it :)

Saturday, November 17, 2007 1:33 PM EST

Ok, so, I am quite sure that once again I left some typos in my last entry that should have been fixed before I updated. But, oh well. I do, however, have great news, I suppose. It seems as though you guys do actually still want to read this here thingy. Therefore, I am moooooore than willing to continue to update this here thingy. Those of you who have had instances where people don't sign understand I'm sure. Sometimes you just feel as though you're talking to yourself. And, if that is indeed the case, it just seems silly to type it all out on a webpage. It feels funny not knowing if people want to know what's going on. And, actually, and unfortunately for some of you, you aren't going to get a very good story today. I am just WORN OUT. But, I will tell you what I was hemming and hawing about as far as my life being saved...yet again.

This time, it wasn't directly related to the illness. Unless you consider people who cause accidents and then leave the scene "ill". I'll just leave that where it is. Fact of the matter is I was involved in what should surely have been a "serious injury" if not fatal automobile accident last week. I got run off the road by someone who wanted to be exactly where I was in the lane. Well, as we all know, 2 vehicles CANNOT be in one place. I was run off the road into a utility pole. Had I not hit that pole, my car would have flipped over and over and over down an embankment. Injuries?? Seatbelt burn. That's it. My car? The front end is COMPLETELY DESTROYED on the left side. I had to go to the local ER which is ALWAYS a nightmare. However, at the time I had to go in (I had called my Duke folks in the ambulance on the way so, of course they called ahead) God had cleared the way and I did not come into contact with another soul except for my mom who followed the ambulance, the police officer who came to get a statement from me and the ER staff--that, in itself is a mini miracle. A person with hem/onc/bmt issues REALLY wants to avoid the ER like the plague--so you don't catch it :) ... just another evidence of God going before us. Despite previously sucky counts (see past few entries) I needed no blood, no platelets, & had no real injuries to speak of. The air bag hit my port but did not damage it from the looks of the xray--another mini miracle considering the impact & bruising. There are MANY more details regarding the Duke communication and the ER experience that I'll have to give later. They are SO COOL but not needed as a "major" part of the story for now. I was released in less than 3 hrs. start to finish. No one stopped to help or see if I was ok. I called 911 and then my mom myself. The truck that was the cause did not stop. It is hard to try and get a tag number when you're looking at a telephone pole that "should" have taken your life. I will post pictures of my car at some point. My platelets at the time of the accident? Oh...13. Yet, no bleeding except bruising from the seatbelt which lingered for about 36 hrs and then started to improve. Miracle. MIRACLE, MIRACLE, MIRACLE. Admittedly, I had started to feel a little like "Lord, do I really still have a purpose here. I really don't think I'm doing much that's significantly changing anyone's life right now". Well, I've said so many times before, and I say again. The righteous live by FAITH NOT FEELINGS!! That accident sure put THAT question to rest.

There's more to the story that started about 2 weeks before this accident on 11/8 (my dad died unexpectedly 11/5/00 and my uncle on 11/10/00 so this is always a volatile time anyways) but you won't get that part today. I'm quite sure the part I've given you is a bit disjointed, but it tells the store anyways and I didn't want to keep people wondering what I was talking about regarding the true MIRACLE that I walked away and God spared me YET again. This time at the hands of someone who did not even feel it was necessary to see if he killed me or not. As many times as disease has tried to take me and now this...MAN, God is just SO AWESOME. SO, SO, SO, SO AWESOME. I am a MIRACLE. God showed me again last week. And I don't mind telling the world. Check back soon. I'll update again to tell the other little parts of the story that make the past month or so just such a praise to God. Mizpah & Shalom. I'll be back as soon as HE brings me back!

Sunday, November 11, 2007 9:37 PM EST

Well, I don't generally resort to bribery in order to update, but this time, that's EXACTLY what I'm doing. Honestly, it's for the sole purpose of determining if people actually even read what I write anymore. If not, I can certainly give caringbridge a rest and send out emails to a few folks that sign a lot, or with whom I keep in close, fairly frequent contact. You know, the frequent encouragers club; those who are faithful to sign in more than once every 2-3 months :). Then, of course, we have those from "Club Lurker" who come around often, flipping the visit count. Yet, for reasons poorly understood, they don't/won't sign in. I'm not here to bash anyone. I thank everyone who stops by. I will, however, stop to say that if you're not here initiating relationship (yes, even over the internet--I like to pray for the visitors to this page God called me to create). There are many reasons for this journey, but a few of the major ones are: to share together with others in similar situations, to offer hope, and to glorify God through testimony while gathering a larger portion of the Christian prayer population than is possible in the local network of the church; especially having been hit with this particular kind of struggle that is foreign to so many.

Having said that, let me just begin to close by saying I have something to share that has happened in the past 2 weeks that are true miracles in my life--bonafide miracles that will blow your socks off if you pray with me through it and let it. A few of you know. Do NOT write anything to the effect in the guestbook. I'm gonna make all these lurkers actually reveal to me that they still read and care what goes on here. Email works for sharing my life with a few. If I'm reaching more than that, I surely want to know it. Soooo, basically, if you want in on my most recent near death experience and beyond so you can pray, think, share with others, whatever, you gotta sign in.

If I get significant traffic with the guestbook this week, I'll let you in on it. If I don't get any significant traffic, I'll wait for you to tell me you wanna know by your sign ins. No one wants to talk to themselves and I have 4 handwritten journals to keep up. I truly will not be offended if you are bored of my story. But, if you're not, I wanna hear from you, please.

I care about you because you cared enough about me to stop by, so just take one more step and sign in. When you read and leave, it is the equivalent of someone waiting anxiously for company, hearing the doorbell ring and then having them run away before they ever spoke...and having that happen over, and over, and over again. Or, another example that happens to be very personal...I cannot even begin to describe with words how exciting it is to go to the mailbox and find actual carepackages, letters, gifts, etc. from people. Now, let me be clear I AM NOT ASKING FOR ANY OF THOSE AFOREMENTIONED ITEMS. I am just making a point that it feels so good to get something other than bills I can't pay...which is 95 percent of my current mail. So, anyways, what I have to share is a story about how the devil attempted to take my life this weekend...BIG TIME! But for the grace of God, I would have been dead. Another brush with death looking positive and I want to give you the opportunity to share the praise when He completely fixes what's broken. Wanna be in? Sign in! Love you guys. Expect an update soon!!

P.S. For those of you "But I don't know what to say/I'm afraid to say the wrong thing." Understandable, but not an excuse. Step out. If you say something less than helpful, APOLOGIZE. Simple as that. None of us is perfect in that department. And, finally, allow me to give you some brief "conversation help". You know I'm always good for a scripture, or three (:

Ephesians 4

29 Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.

I Thessalonians 4

16 For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. 17 After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. 18 Therefore encourage each other with these words.

So, there ya go. A place to start for the "I don't knowers" :) SHALOM!!!

Wednesday, October 31, 2007 11:21 PM EDT

I Corinthians 9:23-25

23 I do all this for the sake of the gospel, that I may share in its blessings. 24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. 25 Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever.

There are likely typos and all sorts of mistakes in that last entry that I should have corrected before pressing "update". But, honestly, I'm mostly [it always bothers me a little not to use completely correct grammar, but, oh well; I just did it in this (phrase that is not) a sentence ] too tired to care :) So, while I promise to TRY to give a fairly specific update although I don't have much time or energy & won't promise anything spectacular. But, I know numbers will say most of it for most of you reading here. Sooo, here goes:

Clinic on Tuesday (10/30/07):

1) SLEW OF PREMEDS FOR INFUSIONS

I am the reaction QUEEN due to so many meds and blood products over the years

2) COUNTS & CHEMS:

CBC/DIFF

HGB 5.4/HCT 17
RBC 1.57
WBC 1.9
ANC 855
PLT 13

CMP - nothing really notable;

Albumin 3.7 (.2 low) - probably a fluke
Magnesium 1.6 (.1 low) - Prograf causes it; on supplements

3) THE ANALYSIS

No, there are no typos in #2 above
---------------------------------------------------------
Yes, I did drive 2 hrs and walk into and around clinic
by myself
-----------------------------------------------------------------------------------
No, I was not bleeding profusely from anywhere
internally or externally
----------------------------------------------------------------------------

4) THE PLAN:

Got my regular IVIG (My $10,000/month viral defense & immunomodulator)

Got my regular Neulasta (My $14,000/month "please give me the equivalent of 10 days Neupogen packed into 1 shot and 5-7 days of intense pain so I don't die from infection" injection)

Got tanked up with 2 units of blood and had that laughable realization that I felt GREAT getting my HGB UP to between 8-9 :)

Watch the swelling from fluid overload keeping legs/feet elevated as much as possible

Watch for bleeding that won't stop (as if that would be difficult to notice--hahaha)

Watch for fevers above 38 (100.5)

And,

5) MOST IMPORTANTLY...

PRAISE GOD!!! I know those numbers don't look so great by medical standanrd. But, God is so very faithful and to look at me, you would never know that those numbers are indicative of someone who "should" (according to medical literature & practice) be knocking at death's door.

Khalita's note to Satan: HAHAHAHAHAHAHAHA! NEVER WILL A ROCK CRY OUT IN MY PLACE! GOD'S WORTHY OF ALL MY PRAISE!!

In addition to the aforementioned prayer requests for provision, Prayer warriors can pray for:

...counts to go up, BP, fevers, pain & swelling to go down, faith to keep believing, courage to keep testifying and the JOY OF THE LORD to keep me strong. I'll keep you posted. Know that you are loved and prayed for as well. I'll be back when He brings me back. I also hope to have the snazzy new background complete with borders and music back in action by then. The absence of it should be a direct indication to you of what a deep place of difficulty I've had to battle in and emerge from over the past several months. But, God is faithful folks. And, He's always right on time. That simple fact brings a smile to my face and hope to my heart right now as I remember and can witness to this truth even in the darkest parts of the journey.

Shalom...

Thursday, October 11, 2007 9:50 AM EDT

I know. Two updates in a week after not updating in two months. Don't get spoiled :) I'm not sure how the Lord's gonna lead me regarding entries, but I'm here today updating according to His will and by His grace. I haven't really been able to do phone calls or sit and visit with people in the past few weeks. As I mentioned in my last entry, things have been a bit overwhelming for me lately. But PLEASE don't hesitate to call/text. It immediately brings a smile to my face & lets me know you're thinking of me and I will get back to you when I am able. Since I skipped the "mundane" details of life last time, I'll share a little of that with you.

I had a wonderful Summer after being at Duke ALL last summer fighting to live. Just being able to see and spend time with loved ones every day was such a wonderful gift. I also got to go on vacation with my immediate and extended family this year to our family reunion on my mom's side and our "BIG" immediate family vaction (with my brother and sister-in-law's immediate relatives on both sides) and it was wonderful. Of course, we had to do the "strange hospital visit" thing for a few complications while away. But, when you are in "our hem/onc/bmt shoes" you come to expect that right? Those can sometimes be a nightmare, but from experience, I arranged plans with Dr. K to go in where I was going to be on each trip before we left town. It wasn't too bad except...ok, you get 1 (one)good "medical care moron" adventure story...

I'm having trouble getting the people from one hospital & my insurance company to understand that I REFUSE to pay the lab costs since my insurance has a problem with the lab the hospital used. Yep, you guessed it. They covered the visit and paid for ALL of that, but the LAB that the hospital chooses to use (with no say from me--sorry, they didn't ask my preference in where to send my labwork & I didn't think to ask them to make sure the lab THEIR COVERED FACILITY uses was also covered. Silly me!) is apparently not covered under my plan. So, they want me to pay the lab costs. NOT. Still fighting that one. Other than those type mishaps. I had an absolutely WONDERFUL time. I still say the best vacation I've EVER been on occurred last year when I got to come home for a 3-day weekend in August after being at Duke for so long. You NEVER understand that until you've had to do it. There really is NO PLACE LIKE HOME!

I had regularly scheduled IV meds on Tuesday. Latest counts were:

HGB 9.4 (transfused 2 units 9/21)
WBC 2.2
ANC 1585 (neulasta given for ANC < 4000)
PLT 14 (transfuse below 10)

I'm in a lot of pain. For those of you familiar with Neupogen, I can describe. Take the bone pain from 10 doses of neupogen and put it into one shot. Sounds fun, eh? We cannot do sub-q shots daily due to infection risk. And, considering an infection from a sub-q shot was a major factor in the 'Meltdown of 2006' (what I call last year's brush with death) we try to avoid holes in the skin as much as we can. Therefore, I get Neulasta about every 10 days instead. Other than that, just the normal IVIG side effects which last 7-10 days for me. I should be feeling much better by the end of next week. So, I'll get a little break before we have to repeat the process. It sucks, but I realize how much worse it could be and am very thankful that it's not.

As far as feeling overwhelmed goes, thank you for your prayers. I feel them. And, thank you for those of you who have tangibly helped as much as you can from where you are with sharing the gifts God has blessed you with with me. I am equally thankful for each gesture of kindness that comes from your hearts. I continue to need a great deal of help and am positive that God will provide what I need right on time. While I freely admit that the waiting gets hard, I also have to remember that He has NEVER failed me. So, I continue to cling to Him with all I am and trust Him as I always have in the 27 years since I gave my life to Him at the age of 4. Blessings to you all. Sign the guestbook if you can. I haven't read any of the entries from when I last updated yet (if there are any). I try to save that for the times when I REALLY need some encouragement immediately. I never know when those times will come so it's nice to be surprised at God's timing of what I need to hear through writings by you that have been submitted at various times. Thank you for caring by stopping by. God bless you for blessing me and I'll be back when He leads me back.

Shalom...

Sunday, October 7, 2007 4:18 PM EDT

Hi guys! I know it has been two months since I have updated. I have considered updating many times and I just didn't have the strength to do it in the midst of all the energy I've used on fighting this formidable foe. So, I've just had to stay away from updating for a while. I apologize, but things have been extremely difficult for the past few months and because I've been so blessed that I refuse to complain, I just kept praying and knew that those who were faithful in prayer for me would be praying also. Unfortunately, due to the public nature of a website, I am unable to go into detail. I recently (within the last few weeks) sent out an email with details to those who are faithful to sign my guestbook. Additionally, my friends with whom I speak by phone on a regular basis are aware of the details of the situation. In an effort not to exclude anyone who was interested, I posted my cell phone number (336-250-9175) and have invited e-mails from anyone else interested.

Due to my limited time and energy (in the mental and physical department) phone/text is the easiest way to reach me. I know that sooooo many people are praying. I would like to ask that believers continue to support me there. There's also a great need for tangible assistance at this time that is not so needed at other times, so I ask for specific prayers to that end. My faith is as strong as ever and continues to be strengthened as my relationship with the Lord continually grows. So, while I am not sure how my current situation will be resolved, I do know that God holds the answer in the palm of His hands. He is faithful. That's all I know. And, although that may not seem like much. I do realize that's all I need to know.

As I have been praying while writing and following the Lord's lead for what to say in this entry, I have been asking God how to help people understand how to pray more specifically due to the unrealistic expectation that I can explain what I need to everyone who desires to be of help. Of course, as He always does, He has answered me--and this one has come rather immediately. It's something I have been focusing on in some of my other Christian journals in which I record feelings, thoughts, prayers, praises, prayer requests, etc. I have quite a few, but this one entry I've been given in the past several weeks may give a bit more insight. I hope so anyways. It is what God has given me...

Many of you know what it's like to go through a life-threatening illness or to have a friend or family member experience it. Of course, depending on which role you play, the struggles and perspective are different. However, being single and dealing with it has a perspective many have not had the need to consider, so I want to do so for you. I've been given a true miracle to survive what was essentially a terminal diagnosis in the beginning. With the lack of a suitable familial donor or the existence of a registry, we were told I "MAY" live six months. Well, this is 27 years later and I rejoice. I know what it's like to go through everything as a preschool, elementary school, middle school, high school, college, and graduate school student in addition to being a working adult. The last one is the one on which I choose to focus. As a working adult with a life threatening illness, I am responsible for:

Driving to work each day

Paying for insurance (life, house, car, medical) AND for what insurance doesn't cover (which is a BUNCH)

Fighting with those insurance companies

Keeping reliable transportation (car maintenance, payment, etc.)

Grocery shopping

Cooking healthy meals

Purchasing, picking up, organizing and taking (around 20 meds per day give or take depending on days/complications)

Researching developments in disease, medication & side effects

Making appointments (doctor, dentist, haircut, car service)

Driving to appointments (200 miles roundtrip just for Duke)

Doing Laundry

Purchasing household & personal items other than food

Cleaning my living space (dishes, floors, etc.)

Paying necessary bills (telephone, utilities, etc.)

Getting another job when the 1st or 2nd isn't enough

I'll stop there with the list for a few reasons. First, I'm tired--hahaha (and no, not from typing the list--I was tired when I sat to do the entry in the first place). Secondly, I have some other things to take care of. And, third, I think you get the point of what I am trying to express. I have not even included some other "non-negotiables" like setting aside SPECIFIC time weekly for service to and prayer with/for others, helping care for my grandmother, encouraging those in similar situations, going to church & serving there, giving tithes & offerings, returning phone calls, throwing away...I mean...going through mail, reading and studying my bible, completing "after hours" work (for my full time job)and keeping in touch with friends. Because of what I believe, these are all things I refuse to compromise. It's hard.

I work very, very hard to battle this life-threatening illness and still live as a respopnsible adult. Many of you reading this entry work equally as hard or harder at what God has given you to do. Everyone has extreme challenges. One of my greatest is that I don't have ANYONE else responsible to help me except me. Not a husband, not children, not anyone. Of course I have wonderful family and friends. My mom loves me tremendously--but she is NOT responsible for me or my needs. God has blessed me with some of the best friends in the world. But, they CANNOT pay my bills or get stuck with needles constantly for me, or take daily medication for me, or stay at the hospital with me all/most of the time, or take me to most appointments or make sure I have food, or, or, or. Why? Because my situation is ongoing until God heals me--yes, I did say UNTIL because I fully plan on being completely healed (whether on this side of heaven or the other) according to God promises--and I cannot continually impose upon people to do that. I save my "asking" for emergencies. They have their own lives that they are responsible to care for and they may not have anything left to give of their time, energy, money, etc. If people are to help with those things, it has to be because after they've worked just as hard or harder than I do, they hear and respond to their heart's desire or God's call to help someone else. It is the same for the help I give to others.

And so, I am back to where I was when I started this entry. I greatly appreciate and am forever thankful for all the things that have been done over the years on my behalf out of the love that people have for me & my family. I am in a place right now where there are needs intertwined in these things I've mentioned that are just not being met. I don't know how they are going to be met. I do fully trust that God will provide as He always has. I don't want to be more specific on a public webpage because I know that EVERYONE has needs to be fulfilled. I do want to offer the opportunity for those who want to pray more specifically to do so and for those who feel led to do more still, I've provided a way for you to get in touch for specifics. So, again, I apologize for the lack of entries. Now you have a long one. I'm not sure if it helps "update" you on how things are. But, at least you know I'm alive and well enough to type an entry this long :) Blessings to everyone. I promise to post testimonies and more frequent updates now as God provides for me as only He can. Thanks for stopping by and feel free to sign the guestbook if you'd like. I always like to know who stops by.

Shalom...

Wednesday, August 8, 2007 9:46 AM EDT

Just wanted to jump on and say that YES, I am still alive and kicking. I know you guys are worried. I can "feel" it. There's just been so much going on (medically and otherwise) that updating seems to be an overwhelming task the more I think about it. So, I just haven't done it yet. Thank you to those of you who have called. I will be returning phone calls before I update the page. If some of you want to call now (this week/next week) I WELCOME that and will gladly talk to you (if I can when you call) or call you back. Please note that I DO NOT answer "unknown" or "unavailable" caller IDs. Therefore, if I don't recognize the number, you won't get a call back. What you need to do is "text page" me. When it says "to page this person..." follow the directions there. My voicemail is full and while I try to clean it out on a regular basis, it seems to get full again right away, so that is really the best way to reach me. I especially welcome Verizon (FREE ANYTIME) calls and text messages :) The rest of you can feel free to call during the day for short talks and after 9pm ET for longer chats. Sorry, but this is best for me right now. I'm in a whirlwind and talking to those who care is what I need most. However, I will keep my promise to update the page as soon as I have the strength and time to do it. I am praying for you all constantly and love you very much. For those who don't have it, my number is 336 250 9175. If you think I'm crazy for posting my number...Well, the crazy part is right :) But that's not cuz I posted my number. You DO know that anyone, anywhere can find out anything they want about you if they know where to look, right? LOL. I am cautious, but realistic. That's just why I said I will not answer the unknown ones. Plus you can't trace my cell to my location so...no stalkers from posting numbers. AND, most importantly, I've got the BIG KAHUNA (multiple meanings, but in this case is used to mean minister/expert in His own profession. None of that wizardry, sorcery nonsense that Kahuna can also mean)watchin' me. (Khalita breaks into song--in her head, with the chorus...God is God and I am not. I can only see in part, of the picture He's painting God is God and I am (wo)man. Though I'll never understand it all, but only God is God...then with the whole song--as she breaks into worship trying to update the journal) And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don�t know

And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He�s painting
God is God and I am man
So I�ll never understand it all
For only God is God

And the sky begins to thunder
And I�m filled with awe and wonder
�Til the only burning question that remains
Is who am I

Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass

[chorus]

Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through Him and from Him are all things

So let us worship before the throne
Of the One who is worthy of worship alone

[chorus]
NAME THAT TUNE!!! 1)SONG, 2)ARTIST, 3)ALBUM, 4)nah, I won't make you do the year :)

Hints:
1)Look at the Chorus

2)Hands DOWN one of my favorite CCM artists and one of the most proliferative. Too many Dove Awards to count and AWESOME song writing. Best friend is Geoff Moore

3)Part of a phrase that's included in one of our great American political/historic writings aimed at explaining our Freedom.

And don't you DARE look at me funny! You guys who know me know that EVERYTHING turns into a praise song in my head--tee hee. :), GOD'S GOT MY BACK & JESUS IS MY BIG BROTHER! I AIN'T SCARED!! :) Alright, yes, this is speckled with humor. Life is hard, but God is good (there I go with another song---hahaha.) Methinks God is calling me into worship time so I better go. We'll use that next "hint of a song" for my next "NAME THAT TUNE!!" update. Be back when the Lord brings me back. (Hopefully with a good update for everyone) Shalom...

Tuesday, June 19, 2007 8:43 PM EDT

VERY short one tonight guys. I am exhausted from a long day at Duke. More on that later. My main reason for updating tonight is that I have to PRAISE GOD for life. Exactly 1 year ago today, I showed up at clinic with all counts combined (hgb plt wbc) struggled to = 15. NO, that is not a typo. Walking around with a hgb 3 was a miracle in itself. And, I would continue to receive each one (big & small) from diagnosis til now...and for the rest of my life--as God promised. So, I ask you to join with me in just praising our Father with me for the awesome things He has done, I will come back soon with a very detailed update to catch you up. Blessings!

Wednesday, June 6, 2007 7:30 AM CDT

Yes, I know. It has been WAAAAAAAAAAY too long since an entry. I know some of you, in addition to being "entry deprived" are "number deprived" since I haven't posted counts in a while. Can you believe I am almost one year out of last summer's life saving treatment?If you're new to the site or the hem/onc/bmt world, read the history. (There is still a formatting problem with the very beginning that I need CB to fix, but needless to say, that is about number 2,469,089 on my list of things to do/I need/to pray for.) So, hopefully it will get done eventually. I don't have time for a long update, but I have been convicted and brought here by the Lord because I need to give a prayer update. We should NEVER ask prayers from God's people and then never tell them how things are. If you ask someone to pray for you, give them the testimony too. It's just as important and is how the body of Christ works. It's important to pray and to know that God is answering those prayers perfectly and specifically although certainly not always in the way or time we thought. I don't have much time or energy, but I will try to give you a brief overview of what's going on.

Topic One: Physically

We are still on a rollercoaster. There was a BUNCH of stuff wrong at clinic yesterday. There are too many "off" labs to post. So, I will post counts:

HGB 9.0 (bouncing around trying to avoid transfusion--better than the 8s we've had for a while)
PLT 13 = restart Amicar to try and avoid transfusion
WBC 2.0
ANC < 1000 = Neulasta shot (can you say BONE PAIN?)

As for everything else: Electrolytes & Kidney/Liver functions are all wacky. So, we made several adjustments and we will be doing very frequent labs for a bit. Did blood cultures too (which I actually BEGGED them not to & they knew why.) For those "in the loop" I will just ask you to join me in saying "false positives SUCK". By the look on my face they immediately knew that's what I was thinking. I didn't even have a fever. They made a decision to culture at the last minute cuz they couldn't get my BP stable. It was from 60s/40s - 90s/60s. Very low for me. But I SO hope and pray we are not to enter the "do you really have a line infection" game. Oh joy! Praise God I have lines is all I have to say. If I had to get stuck, there's NO WAY I would agree to these constant labs. I'll try to keep you posted on those numbers this week, so check back...

Topic Two: Emotionally

Please continue intense prayers here that my emotions will be controlled by my gaze at the eyes of Jesus. My body thinks it is having PMS & Menopause simultaneously due to drugs I'm on. It is the end of the school year, my norepinephrine & serotonin levels are screwed up along with my FK levels so we added new meds for this as well as switched me back over to methadone for some chronic pain control.

Topic Three: Spiritually

Jesus is my rock and I am standing on Him. I learned looooong ago how necessary continuous prayer is and boy have I had continually heated, tearful and exciting conversations with the Lord recently. He always gives me what I need exactly when I need it. It's what keeps me going. Praise God for salvation and thank you Jesus for dying for me. I have sufficient grace and am very blessed.

Topic Four: Financially

I am struggling here and rather than post it on the page, I sent an email to several people swallowing my pride and asking for help. Thank you so much to those of you who came to my aid immediately. I need so much more, but everything helps and you have NO idea how much you have blessed me, helped me and relieved my stress as what you sent was EXACTLY what I needed in a particular siutation on each occasion I received something from you guys. It is undeniably God at work on your hearts on my behalf and after agonizing asking for help, I was so humbled by your love and immediate help. There is NO DOUBT God led you and you responded==all of you. Please spread the news.

I am working on detailed thank you notes, but Monica, Kathy, Alison & Anita I have gotten your cards & packages. They meant and continue to mean the WORLD to me. I got tears in my eyes and a smile on my face with each one because I could truly feel the love of you praying for me over these years as friends. You helped me eat while I spend the days at Duke alone, pay my transportation (car maintenance & gasoline--which I recently discovered while trying to pay bills that the more frequent trips to Duke have increased my gasoline needs such that they are equal to my car payment per month--RIDICULOUS but necessary) to make all the back and forth Duke trips alone (which are many since my mom is working to help me pay for medication & medical bills. She is just maxed out and tired and I feel so bad that she's still having to work so hard to help support me when she should be retired and spending money on herself. Even with all that work, this is not (save for a miracle from God--which I FULLY believe in by the way--going to go away as long as I need the expensive care to keep living. So she's pressed also without my dad to help now & with no one else can go get a job. I have 2 and so does she. I thought about trying to work more this Summer for extra income but I just don't think my body or mind can do it. I've spent 4 of the last 12 months inpatient (not consecutively) and have been doing outpatient for the rest almost weekly since my last long inpatient stay in Jan/Feb. I'm afraid if I don't take some time to just rest, I may not be here to need money. I'll be with my dad instead :) Ready to go when God calls me home---not trying to hasten it however!

So, as far as the mail help goes, of course, there's just the simple task of being able to check the mail and find more than a 4, 5 or 6 digit bill I can't pay. So, thank you. If anyone was left off the email and you would like to have it, leave a short guestbook note and I will (or will have someone) forward the message to you. There are still many, many ways people can help me out in tangible ways.

I think I'll stop for now. I'm tired of writing (typing) and I feel sick from IV meds yesterday. Plus, I had to help my mom with something strenuous for a few hours this morning and while I did actually sleep off and on last night, I'm still achy and really feeling of Neulasta combined with IVIG. So, I need not get my self too emotionally excited today. There are so many things that can send me into a torrent of tears that I take a little bit as a time as God leads. This is also how I pray for you guys. I have said this before, but I want to reiterate it: DO NOT withold specific prayer requests from me because you think "i have enough on my plate". We ALL have enough on our plate and it's STILL our duty (and my pleasure) to minister to and hold each other up. I pray for you all the time so specific requests are QUITE welcomed. Secondly, SIGN IN when you visit. This also helps me pray for people. Email is overwhelming so I may not get to that as quickly. I have had to pare down things for my sanity as the end of school approaches. Call me if need be. I don't mind and if I am busy or asleep, I'll turn my phone OFF but don't worry about bothering me. It's similar to the mail...nice to hear from someone NOT trying to collect a bill :) 336 250 9175. I'm on Eastern time and will answer thru midnight usually.

So much more to tell, but I'll do it later. Pray me through the next few weeks here and you will see updates pick up again a little. Much has happpened while I haven't been updating and I need to share that with you. I love you guys and will be back as soon as the Lord leads me back. Blessings...

Wednesday, April 25, 2007 7:35 PM EDT

I know it has been a LONG time since I've updated. What I can tell you right now with the time and energy that I have is that I need your PRAYERS to the Father in Jesus name more right now than perhaps since last Summer. I don't mean to be clandestine, but as you will see with those updates when you look back, I really couldn't say much then either. I was battling hard and needed the prayers of the saints. The situation with the prayers needed is the same now. If your group is praying, your church is praying or if you are praying alone, I need Christian believers to stand with me now and pray me through another very difficult time. Things are now very difficult again and I have a HUGE battle ahead. The battle is the Lord's, I know. And He will renew my strength so that I will soar on eagle's wings (yes, severely paraphrased--on purpose really because that's how my heart says it right now). I know that this is nothing compared to the surpassing greatness of the glory of the Lord. So, as you can see, I am IN scripture. Pray that I remain there and that I get the love and support I need not only with prayer but with actual people too. I'm outpatient at the moment.

I do love you guys. And, as always, my turmoil NEVER indicates that I have stopped standing by, thinking of or praying for you. That's what keeps me going sometimes--knowing that I have people who want and need me to be involved in their lives just as much as I need them. So, as we trust in the Lord together, know that I am ok for now...just really requesting some intense prayers for the next little while and will do updates as I am able for specifics. Or, you can call. Some of it is just "not for website reading". Email's not the best right now because I don't feel like being at the computer more than just a few minutes. I love you and I love Jesus. Please stand with me and help and thank you for all of you who have done this faithfully. I am so blessed. Be back as soon as the Lord leads me back...

Monday, April 2, 2007 7:13 PM EDT

SCROLL DOWN TO THE BOTTOM OF THE YELLOW TEXT FOR THE "MEDICAL" PART OF THE UPDATE

Hello friends. Happy Holy Week. I didn't update yesterday because I spent the whole day worshiping and talking to God. BUT, Here's the downlow on that day...

DAY OF THE WEEK: SUNDAY

EVENT: THE TRIUMPHAL ENTRY (INTO JERUSALEM)

TODAY'S SCRIPTURE(S): Matthew 21:1-11, Mark 11:1-10, Luke 19:29-44, John 12:12-19

KHALITA'S MEDITATION: The Triumphal Entry is one of my favorite sections to study simply because it's SO POWERFUL...Jesus reminding them that "rocks will cry out" (if people don't) signifying how worthy He is to be praised (Luke--my favorite synoptic gospel), the Pharisees UTTER disgust at the fact that "the whole world had gone after him" after hearing and seeing him raise Lazarus from the dead (John--my favorite overall gospel), the reminder that the New Testament FULFILLS (NOT ABOLISHES) the Old Testament (Matthew), and Jesus, SAVIOR OF THE WORLD, taking time to "hang" with his buddies late at night when he got into town reminding us of the importance of fellowship OUTSIDE the church just to have fun. The temple was closed when Jesus arrived to town. He just hung out with 'the 12' (Mark)

TOMORROW'S (MONDAY'S) SCRIPTURES: Matthew 21, Mark 11

MONDAY'S EVENTS:

1 - Jesus curses the fig tree

2 - Jesus cleanses the temple

(NOTE: I WANT PEOPLE TO HAVE TIME TO READ AND DRAW THEIR OWN MEDITATION OUT OF WHAT THE LORD SAYS BEFORE THEY READ MINE IF THEY WOULD LIKE, SO MY MEDITATION PART WILL BE A DAY BEHIND)

MY PHYSICAL HEALTH

Monday update before Tuesday clinic. Once again, I am HAPPY to be going to clinic so that I can get better. Right now I'm not feeling very well. Part of it is a sinus issue that has been going on (this time) since I was discharged from being septic back at the end of January. Pollen gets under my contact lenses as those of you who live in the "allergy belt" can attest to the "everything is yellow-green" phenomenon that goes on around here. And for those of you who may not know, immunosuppressed people like myself are prone to sinus infections. Actually, no, now that I'm thinking back about it, this sinus issue has actually been going on since December 20th == when we first found out I had positive blood cultures. Since I had to add that, I'll add the story and you "Duke People" will appreciate this. It's funny. Of course we were going out of town for Christmas and considering all that I had going on since May of 2006 (check the summer entries for details) I had a cold and they wanted to "eyeball me" before we left. Tim was on that day. He checked me over, put me on a z-pack and then said..."well, since you're on so many immunosuppressants, let's do cultures just to be safe". Ok. No biggie. I've been septic many times before. I didn't even have the 38.5 temp to "qualify" for cultures. It was like 38.2 or something. I'm thinking "whatever" on cultures because I figured "NO WAY" is "ANYTHING" coming back positive. Well, we ARE talking about me here. My family and I left town. And, once again, I gave the Duke staff a little bit of a heart attack, and made Dr. K very angry--but she quickly got over it when I explained what happened. But, my cultures were back growing in like HOURS or something...

So, people are calling me from cell numbers (that I don't recognize) and I'm on vacation, taking my Z-pack and NOT expecting any "Dr. calls" so I just let it ring and go to voice mail figuring I'd check it when I got to it--it was vacation. Oh dear. Wrong move Khalita. ALWAYS answer your phone. I was on the way to Duke the next day (when of course they wanted me back there IMMEDIATELY), calling Dr. K on the way to explain. We tried to get the lines cleared outpatient. And those of you that know my history with PIVs know why I had an absolute MELTDOWN in the middle of clinic when we 1) decided I'd have to be admitted for a while and 2) We'd "probably" have to pull them. And, Tim (Driscoll) happened to be inpatient when I was finally admitted. I called him in there and said "this is ALL your fault for doing cultures when there was NO indication of a line infection" very meanly...then laughed and said "what are you trying to do, save my life or something?"

I think I scared them sufficiently this summer (when almost all of my counts were near 0 at some point) that they're still a little worried about me--especially with sepsis since that was our main problem and could be what completely shut down my marrow. So anyways, hopefully we can figure out the sinuses and the other symptoms tomorrow--OUTPATIENT--and I can spend the rest of the week at home.

MY SPIRITUAL HEALTH

For those of you who have been praying, KEEP PRAYING. I had a very intense experience with God this past weekend and things are better. I don't have time to go into everything, but lets just say I know what it means to cry out...CRY OUT...to God, to have tears be your food day and night...all those things you read in Psalms. I feel so close to God because this entire experience over 27 years of dealing with this has made me realize and experience most of what the stories in the bible speak about. In that respect, this is awesome. But there are just days when although you realize that God has to be glorified through it or He would have healed you by now, physically, you just don't feel like you can keep going on in the flesh. He restores that though. He promises to and He does. He never breaks a promise, EVER. And, He never fails to answer my prayers, even if sometimes the answer is "NO". I have gotten plenty of "NO" answers and that's ok too. The HARDEST is when God is silent. But, He eventually speaks. When you're tired, it's very hard to hear Him and very hard to wait and all you can do is pray. So, I know that and rather than continually update on my anguish, I had just been asking people to pray. I decided to update today 1) because of clinic tomorrow and 2) because as God's people, we have to communicate with each other. Don't ask people to pray for you and then not give them the testimony. We all need that. And, I will close with the very thought that brings up. Becky (thanks for signing :) Left a message stating that although I had what basically boils down to a "one line entry of desperation" I stopped by their guestbook to sign. Of COURSE I did. NEVER does God give me permission to stop ministering to others--NO MATTER WHAT I'M GOING THROUGH. That is my call in this life and my purpose here on Earth and I certainly would not still be here if that were not a part of His plan. So, like Paul...you see, every time I update, I just cannot get through it without at least referring to 1 specific scripture. That, in it self, encourages me and makes me smile because, at the very least, it reminds me that I have read and experienced His Word and the fact that it is TRUE over and over and over. Small encouragements go a long way on these journies. Anyways, the scripture is this:

16 Yet when I preach the gospel, I cannot boast, for I am compelled to preach. Woe to me if I do not preach the gospel! 17 If I preach voluntarily, I have a reward; if not voluntarily, I am simply discharging the trust committed to me. 18 What then is my reward? Just this: that in preaching the gospel I may offer it free of charge, and so not make use of my rights in preaching it.

19 Though I am free and belong to no man, I make myself a slave to everyone, to win as many as possible. 20 To the Jews I became like a Jew, to win the Jews. To those under the law I became like one under the law (though I myself am not under the law), so as to win those under the law. 21 To those not having the law I became like one not having the law (though I am not free from God's law but am under Christ's law), so as to win those not having the law. 22 To the weak I became weak, to win the weak. I have become all things to all men so that by all possible means I might save some. 23 I do all this for the sake of the gospel, that I may share in its blessings.

24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.

25 Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever. 26 Therefore I do not run like a man running aimlessly; I do not fight like a man beating the air. 27 No, I beat my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.

One of my favorites. I had many conversations with God and a few with the devil this weekend (don't get freaked--sometimes you have to just rebuke satan, tell him no, remind him of his fate and confess that he cannot have you because you belong to God) and this is one of the things I had to remind Satan of. Aaaah, that felt so good even through tears as I literally screamed it at the top of my lungs while lying on my bed worshiping. :) I'll update when there's news. I love you and am still lifting you and your needs up to the Father, so please don't hesitate to share them.

Wednesday, March 28, 2007 3:45 PM EDT

I'm tired. I'm struggling. I need prayer. Please PRAY for us (my family, my friends AND me).

Thursday, March 8, 2007 8:44 AM EST

YOU KNOW THE REST. THAT'S WHERE WE CURRENTLY SIT...AND WHERE WE BETTER STAY. NOW, AS FOR ME IN REFERENCE TO THIS SPECIFIC ENTRY...

Don't shoot...PRETTY PLEASE? February 22 - March 8th (Just realized my grandfather would have been 94 today had he been living--it's his birthday)...That's "soon" isn't it? Can I use 2 Peter 3:8 as an excuse? (Despite the fact that I used improper English to ask that question?) No? Ok, ok, I guess I'm just gonna have to "buck up" and take my lashing. It's been 2 weeks since I've updated. I really didn't mean for it to be that long. And, God has led me here a few times. But, once again, this has been one of those "if you want to" times. God does sometimes give us "if you want to" missions. (Other missions or commands are immediate and/or mandatory) And, there's no punishment or loss of blessing for saying "no". I think many often forget that God is the example of the PERFECT PARENT. He's the only one there is. Our "earthly" fathers sometimes give us choices. Why wouldn't our (perfect) Heavenly Father do the same thing? Just food for thought. I have to say, there have been VERY few guestbook entries lately. I know that's not because I'm not loved because I TRULY FEEL your prayers in a MAJOR way. (I hope the converse is true as well.) And, to be honest, I really haven't had time to even look at the guestbook much. BUT, please feel free to sign in with a quick hello as I DO enjoy reading them tremendously and they are "quick comfort" during some of the more difficult times of the day when a "pick-me-up" does wonders to get me through the rest of the day's challenges. And, you know that new song and background I'm supposed to be getting up? Well, obviously that didn't get done yet either. So, with all of these "unfinished" things, some people may be asking what in the world I HAVE gotten done. THAT I can answer...

Go read the last several guestbook entries. Stop at Jo's most recent entry. Then add a "me too Jo" response from me in response to her entry. There are seasons that flow through our lives and seasons that flow through the family of God. It's one of those things that keeps us from feeling so lonely/alone as well as gives us someone(s) to rejoice/praise with. Yes, here it comes. The scripture. Go grab your sword if it's not within "arm's reach" (of course, you can get access to all kinds of online versions, so technically everyone has one "at arm's reach", but get "yours" if you prefer) and turn to Proverbs 14. And the word of God reads...

Proverbs 14
1 The wise woman builds her house,
but with her own hands the foolish one tears hers down.

2 He whose walk is upright fears the LORD,
but he whose ways are devious despises him.

3 A fool's talk brings a rod to his back,
but the lips of the wise protect them.

4 Where there are no oxen, the manger is empty,
but from the strength of an ox comes an abundant harvest.

5 A truthful witness does not deceive,
but a false witness pours out lies.

6 The mocker seeks wisdom and finds none,
but knowledge comes easily to the discerning.

7 Stay away from a foolish man,
for you will not find knowledge on his lips.

8 The wisdom of the prudent is to give thought to their ways,
but the folly of fools is deception.

9 Fools mock at making amends for sin,
but goodwill is found among the upright.

10 Each heart knows its own bitterness,
and no one else can share its joy.

11 The house of the wicked will be destroyed,
but the tent of the upright will flourish.

12 There is a way that seems right to a man,
but in the end it leads to death.

13 Even in laughter the heart may ache,
and joy may end in grief.

14 The faithless will be fully repaid for their ways,
and the good man rewarded for his.

15 A simple man believes anything,
but a prudent man gives thought to his steps.

16 A wise man fears the LORD and shuns evil,
but a fool is hotheaded and reckless.

17 A quick-tempered man does foolish things,
and a crafty man is hated.

18 The simple inherit folly,
but the prudent are crowned with knowledge.

19 Evil men will bow down in the presence of the good,
and the wicked at the gates of the righteous.

20 The poor are shunned even by their neighbors,
but the rich have many friends.

21 He who despises his neighbor sins,
but blessed is he who is kind to the needy.

22 Do not those who plot evil go astray?
But those who plan what is good find [a] love and faithfulness.

23 All hard work brings a profit,
but mere talk leads only to poverty.

24 The wealth of the wise is their crown,
but the folly of fools yields folly.

25 A truthful witness saves lives,
but a false witness is deceitful.

26 He who fears the LORD has a secure fortress,
and for his children it will be a refuge.

27 The fear of the LORD is a fountain of life,
turning a man from the snares of death.

28 A large population is a king's glory,
but without subjects a prince is ruined.

29 A patient man has great understanding,
but a quick-tempered man displays folly.

30 A heart at peace gives life to the body,
but envy rots the bones.

31 He who oppresses the poor shows contempt for their Maker,
but whoever is kind to the needy honors God.

32 When calamity comes, the wicked are brought down,
but even in death the righteous have a refuge.

33 Wisdom reposes in the heart of the discerning
and even among fools she lets herself be known. [b]

34 Righteousness exalts a nation,
but sin is a disgrace to any people.

35 A king delights in a wise servant,
but a shameful servant incurs his wrath.

Now there's a bunch in there--as with all of God's Word. But, I have underlined the part that is the current focus. There is a "season of praise" flowing through the family of God right now. In conjunction with that, there are also some major "devil messing" situations. They go together in order to help us better understand the meaning of the cross while we go through Lent. How it all connects is long and complicated, but God has given me a "mini-example" I hope I can make sense in the shortened form I'll try to convey here...

As we realize everyone "goes through stuff" there are several similar questions and experiences we have. One is the relationship(s) with our loved ones, ourselves and God. Why are "our" loved ones "the strongest, the cutest, the best"? Is it really because they are "better" than others. Of course not. God loves us all the same (regardless of how much we love, acknowledge or serve him). The difference is that when you see how much a person goes through, how they deal with it, how they struggle and overcome, how they share, how they give, how they help, etc., it gives you a more complete picture than you get from someone else who may be going through a similar situation but that you don't get to witness the details of what they experience as much. I've shared this before, but God put it on my heart to share again as He was preparing this entry in my heart over the past week. An example--my mom is the most amazing woman I know. There are MANY amazing women all of whom have amazing stories. But I certainly don't know them as well as I know my mom who has been by my side, driving me craz...er, I mean, loving me faithfully :) through all the years and every trial.

She has served the Lord faithfully (and thus led her family to do the same) after being told her youngest child wouldn't live past 5 years old, and been a faithful wife and mother in the process. She drives me CRAZY...and I couldn't have made it without her. That's why she's still here. My dad's not and I miss him so badly it still physically hurts sometimes. But, God gives us what we NEED. It's not that I didn't NEED my dad, so God took Him home. But, I (will) need(ed) my mom MORE through these next years. So, God left her here. If if the opposite were true, my dad would still be here. That knowledge brings me SUCH peace and comfort as does EVERY other aspect of knowing that the Lord's workings are not ours, but they ARE PERFECT! How does that tie into the underlined verse above? Because when I feel like no one can know exactly what my heart feels, the Lord confirms that is correct. Then He reminds me of all those other truths I just mentioned to bring me comfort. It is true that no one can completely understand. That is how the bible says it should be. It is also true that my membership in the family of God helps with the pain from all of these difficult trials. Both my joy and my sorrow are too deep to fully explain with words. But, the extent to which I am able to effectively share it is ENOUGH--just enough of what I need. Double comfort--the DOUBLE PORTION PRINCIPLE is what I like to call it.

I truly believe all that friends, and the Lord has continually shown me these "connections" and experiencing the truth of His Word as I read it, without me even having to ask most of the time. We get some of what we want, but as believers we will NEVER go without what we need. And, the way to get there is ALWAYS through the PRAISE. We have to PRAISE Him THROUGH the circumstance--whatever that might be. And that explains why I shared the song I did last time. I haven't found it yet. By the time I do, God may give me a different song to put up, but I'll keep trying. Praise, praise, praise, praise, praise...and then praise some more. THROUGH your cirucmstance. When you LEAST feel like it. When it doesn't seem to be working. PRAISE HIM. And, there I leave it for today. I'll put up some new lyrics and even tell you who it is this time. You got a break. No bible flipping or music research. Hopefully just something quick that has touched your heart and/or encouraged you just enough to go on to the "next thing".

Many people have done this first song, so I don't know who it "belongs" to originally. I think it's a little silly to "copyright" worship songs anyways. I kinda think they all belong to Jesus! But no one asked me, and it's really not that important and I DO understand that people who sing for a living need to get paid as well and copyrighting helps that--just like "owning" your own property if you have a home--you'll gladly share with your neighbor, but you know it's God's land. You have paid or currently pay for it. But, yes, the land/home, whatever, was a blessing from God so it's really HIS and we shouldn't hoard it--He blessed us to SHARE. Don't know how I got on THAT tangent :) Anyways, the version I have on CD is, I believe, the Brooklyn Tabernacle Choir version:

Praise Him

Chorus 1:

Praise Him (4x);
Jesus, blessed Savior,
He�s worthy to be praised.

Verse 1:

From the rising of the sun,
Until the going down of the same;
He�s worthy, Jesus is worthy,
He�s worthy to be praised.

Chorus 2:

Glory (2x),
In all things give Him glory;
Jesus, blessed Savior,
He�s worthy to be praised.

Verse 2:

God is our rock,
hope of salvation,
a strong deliverer,
in Him will I always trust.

The second song is one of the "new classic" dance before the Lord contemporary worship songs. A little Mary, Mary...

Shackles

(Chorus)

Take the shackles off my feet so I can dance
And I'm gonna praise You. I just wanna praise You
You broke the chains now I can lift my hands.
And I'm gonna praise You
I'm just wanna praise you

In the corners of my mind
I just can't seem to find A reason to believe
That I can break free
Cause you see I have been bound for so long
Felt like all hope was gone
But as I lift my hands I understand
That I should praise You through my circumstance

Take the shackles off my feet so I can dance
And I'm gonna praise You, I just wanna praise You
You broke the chains now I can lift my hands
And I'm gonna praise You
I just wanna praise you

Everything that could go wrong
All went wrong at one time
So much pressure fell on me
I thought I was gon' lose my mind
Lord I know You wanna see
If I will hold on through these trials
But I need You to lift this load
Cause I can't take it no more

Take the shackles off my feet so I can dance
And I'm gonna praise You, I just wanna praise You
You broke the chains now I can lift my hands
And I'm gonna praise You
I just wanna praise you

Been through the fire and the rain
Bound in every kind of way
But God has broken every chain
So let me go right now

Take the shackles off my feet so I can dance
I just wanna praise You
I just wanna praise You
You broke the chains now I can lift my hands
And I'm gonna praise You
I'm gonna praise You

Shackles (Praise You) from the album Thankful by Mary Mary
� 2000 Sony Music Entertainment Inc.

Words and music by Warryn Campbell, Erica Atkins-Campbell and Trecina Atkins-Campbell

� 2000 EMI April Music Inc., Nyrraw Music, That's Plum Song, It's Tea Tyme (ASCAP)
All rights reserved. Used by permission.

Peace be with you. I have clinic on Tuesday. There's lots to update medically and I will do that shortly after we have our "day-o-meds" and clinic chat. Keep praying. That's what's making ALL the difference--the collective prayers of God's holy people rallying around and praying in agreement with me. I firmly believe it WITHOUT A DOUBT. So, keep it up and know I'm praying hard for you too--many, MANY of us are and have been "going through it" recently. Mizpah...[THAT you'll have to look up if you don't know what it means--you guys KNOW I couldn't let an ENTIRE entry go by without leaving you with a "bible flipper" :) ]

Thursday, February 22, 2007 2:14 PM EST

(Wondering why my updates need prefaces recently...dunno, but this one needs one too. First--it's long. Second, the note at the top of the page has been my answer to people when they ask what (if anything) they can do. I'm going through a rough time--which I will try to share in some kind of organized manner--but I warn you--I am FAR from organized, so don't get frustrated. That's the reason for the note. What I need most is for believers to hit the floor on my behalf. Please know I'm hitting the floor on yours too. We need each other. That's why God gave us each other. Now, on to the update...)

Ok, so it's been too long since I've updated relative to my recent complications and the fact that I know you guys wait for the updates on Mondays (catching up from the weekend) and Wednesdays (they know I'm a "Dr. K" person with Tuesday clinic). So, I apologize. The short answer to why the entry has been delayed until today, is, quite frankly, that I don't have an excuse other than the fact that I really have not felt well and this is like number 356 on my list of things I need to do. PLEASE don't stop praying or assume that "no news is good news". A lot of people say that and it really is true. It's sometimes true for me. But, for those who know me well, generally if you don't hear from me for a while, you should probably assume that I'm very sick or very buried with whatever is going on and that you need to step up the prayers and start calling/texting my cell phone...which doesn't work right now and is a whole other entry in itself. I have soooo many stories just from the past week that were not funny at all in the moment but are really funny now. Anyways, this is going to be a bit of a strange update...or maybe "different" is the word.

Usually, I update so that you know how to pray or to let you know what's going on in general. I think you'll be able to get that from this entry, but that's not the approach I'm taking with it. The real reason I'm updating today is to try to get some thoughts out of my head to a place where it will be most beneficial to all parties. My head is SO jumbled I cannot even think--info overload. And, since I can't really talk without crying, I'm using this as an outlet. So, you're just gonna get a glimpse of what goes through my head during the days. A sort of "prayer, pattern of my thoughts, how I cope" type deal. I'll start with clinic...

Clinic was a Tuesday at the zoo as usual. I showed up with a 38.8 so we went through all the "necessaries" for that. If you are an "outsider" please just get someone to translate. Sinus infection, Levaquin for 21 more days after just 7 days off, IVIg, hold diuretic, increase enalapril, d/c procardia (suspected--at least partially--to have caused so much swelling). Down on the steroids. Sue...I LOVE Sue...poked her head in my door at clinic on Tuesday (between times I was puking) and just took a minute to talk to me and give me some love. She wanted me to know she was sorry I wasn't feeling well and commented that "you've had a ROUGH several weeks". I agreed and thanked her. She gave me a smile and I went back to resting. She wasn't even taking care of me Tuesday but wanted me to know she cares. Debbie's the same way. I absolutely ADORE Debbie and LOVE it when she gets to take care of me :) I am home now and the update from home is this...

Some days it all just gets to be too much. Today, it all just seems to be too much...

Every day Jesus ends up being just enough (and many days MUCH more than enough--I'll take either). Today, Jesus is just enough...

I have mentioned many times that when I was called to full time ministry, in 1997, it was out of 2 Corinthians. This is the book the Lord showed me was the foundation of His specific call on my life. Each time I take a new step, He leads me back here. And, here I am...

II Corinthians 12:7b-10

...there was given me a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10 That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

We all have fears and passions. Those two words may seem like they don't fit too well together, but let me make a case for why they do. As Christians, the only thing (or ONE--God isn't really a "thing") we should fear is God. Likewise, our passion should be for our Lord. We've entered Lent. I've decided to give up medication. Think that'll fly with Dr. K? KIDDING guys, TOTALLY kidding. I'm giving up snacks. This is a struggle for me since I'm on steroids and I'll go into more detail as the season of Lent goes on. But, you can be praying for my strength in sticking to my commitment. I'd love for anyone else to share their pledged sacrifice in the guestbook so that we can all be praying for each other. So, feel free to do that if you'd like to do so. That's what Christian family is for and since we've all bonded as a little cyber/Christian/caringbridge family, that may be a neat way to draw us closer together. Anyways, whatever God leads you to do is fine. I have PLENTY of prayer time so just share as the Lord leads and know I'm praying for you regardless. What a wonderful season to think about what He's done for us. I am CLINGING to Jesus as I realize that He died for me & that's all that matters. Yet, as I just said (and shared in the scripture above) Jesus is enough. This is the answer to every problem I face, every anxiety I have, every trial I go through, every dart satan tries to throw at me.

His grace is enough, His love is enough, His provision is enough. I am going through a HARD time right now. I mean HARD. HARD to the point where I can't even bring myself to talk to anyone about it without bursting into tears. So, I try to avoid doing that--talking to people about it. I CAN and DO talk about other stuff, which is wonderful. I really need the communication with other people (and the distraction). But, I DO NOT mind admitting that (even though I'm not talking specifically about most of it to anyone but Jesus) I'm struggling...and, as I said, I am REALLY STRUGGLING. It's not so much that things are horrible medically. However, I have been through a very traumatic year medically as a whole and it really takes a lot of energy and grief work not only to allow yourself to feel the things you could not really stop to take in when you were in survival mode because there is no time--you have to just GO and roll with it. When things get better, God allows you the time to start to deal with it all and work it all out so that, if it is your desire (and it CERTAINLY is mine) you can learn in FULL exactly where He is taking you as a result of what you've endured. That's where I am and I LOVE it because my relationship with Him is just growing deeper and deeper. Easy? NEVER. Worth it? ALWAYS. So then, as things continue to unfold in God's timing, in the midst of this struggle, I am examining my faith in obedience to our Lord...

II Corinthians 13

...since you are demanding proof that Christ is speaking through me. He is not weak in dealing with you, but is powerful among you. 4 For to be sure, he was crucified in weakness, yet he lives by God's power. Likewise, we are weak in him, yet by God's power we will live with him to serve you. 5 Examine yourselves to see whether you are in the faith; test yourselves. Do you not realize that Christ Jesus is in you�unless, of course, you fail the test? 6 And I trust that you will discover that we have not failed the test.

Now this "testing" thing is right up my alley. I DO NOT fail tests--not in any way, shape or form. I cried when I made my first C (it was in college). I cried when my class rank dropped from single digits in high school to triple digits at Duke. I was devastated. It is really quite funny now, but then it seemed like SUCH a tragedy. As you get older, the Lord just continues to give you perspective. And I laugh about it now, but it SURE wasn't funny then. As I have continued to grow in the Lord, my greatest fear has become disappointing God or missing what He is asking me to do/has for me and in the process being a horrible witness. This is what my heart says/feels. The righteous live by FAITH, not feelings. So, the answer to that...as far as "being a horrible witness" is...found in Philippians 1. You'll have to look it up if you want EXACT wording or context. But, basically, He started the work in me when He saved me. HE will finish it. He doesn't do anything halfway. So, the devil is a liar. I cannot fail. Fall short--yes. Fail--NEVER. I am SAVED. I can't be a horrible witness because God is running this show. He is the same God. The New Testament fulfills the old. His word is the ONLY THING that will never change. And, THAT, my friends, is why the righteous live by faith...

OT - Habakkuk 3

3 For the revelation awaits an appointed time;
it speaks of the end
and will not prove false.
Though it linger, wait for it;
it [a] will certainly come and will not delay.

4 "See, he is puffed up;
his desires are not upright�
but the righteous will live by his faith [b] -

NT - Romans 1

16 I am not ashamed of the gospel, because it is the power of God for the salvation of everyone who believes: first for the Jew, then for the Gentile. 17 For in the gospel a righteousness from God is revealed, a righteousness that is by faith from first to last,[a] just as it is written: "The righteous will live by faith."[b]

NT - Galatians 3

10 All who rely on observing the law are under a curse, for it is written: "Cursed is everyone who does not continue to do everything written in the Book of the Law."[c] 11 Clearly no one is justified before God by the law, because, "The righteous will live by faith."[d] 12 The law is not based on faith; on the contrary, "The man who does these things will live by them."[e] 13 Christ redeemed us from the curse of the law by becoming a curse for us, for it is written: "Cursed is everyone who is hung on a tree."[f] 14 He redeemed us in order that the blessing given to Abraham might come to the Gentiles through Christ Jesus, so that by faith we might receive the promise of the Spirit.

NT - Hebrews 10

35 So do not throw away your confidence; it will be richly rewarded. 36 You need to persevere so that when you have done the will of God, you will receive what he has promised. 37 For in just a very little while,
"He who is coming will come and will not delay.
38 But my righteous one[f] will live by faith.
And if he shrinks back,
I will not be pleased with him."[g] 39 But we are not of those who shrink back and are destroyed, but of those who believe and are saved.

My greatest passion is Jesus. He's not a part of my life. He IS my life. I cannot BREATHE without Him. (I could live without many things and I could carry on. But I couldn't face my life tomorrow without your hope in my heart I know. I can't live a day without you. Lord there's no night and there's no morning without your loving arms to hold me. You're the heartbeat of all I do, I can't live a day without you.) He is ALL that matters. And, in the midst of this storm (and I will praise you in this storm and I will lift my hands. 'Cause you are who you are, no matter where I am. And every tear I've cried, you hold in your hand. You've never left my side, and though my heart is torn. I will praise you in this storm) while I'm clinging to Him with ALL that I have (and I will hold on to the hand of my Savior. I will hold on, with all my might. I will hold loosely to things that are fleeting. And I will hold on to Jesus, hold on to Jesus for life. Like a child holding on to a promise. I will cling to His word and believe as I press on to take hold of that for which Christ Jesus took hold of me...) and all that I am--all that HE has made me--I am waiting on Him to move as He always does (Lord move in a way that I've never seen before. There's a mountain in the way and a lock on the door. I'm drifting away. Waves are crashing on the shore. Lord move...or move me) He is there and is constantly showing me in big and small ways just how much He loves me. His answers are so immediate and comforting. That doesn't mean the "big" issue is solved. But, I don't need the "big" issue solved. I've learned not to miss all the "small" miracles looking for the "big" one. Every day that I wake up is a miracle because the devil is trying to kill me. He's trying to kill you too. Don't believe me? Check this out...

(...sorry, but you're all out of "free scriptures" for the day. If you want this next one, you'll have to look it up. I'll give you a hint. It's in the NT and it's in one of the books Paul did NOT write :)

8 Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. 9 Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings. 10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

All I need is the roadmap of God and the strength to put one foot in front of the other to follow where He leads me. (And so I'm gonna lay it down. I'm gonna learn to trust you now. What else can I do? Everything I am depends on you. And if the sun don't come back up. I know your love will be enough. I'm gonna let it be. I'm gonna let it go. I'm gonna lay it down). I'm going to change the song here shortly. I'm not sure what I'm changing to yet--still waiting for God on that one. I just didn't feel it was time yet--like God was waiting on "something" to tell me it was ok to change it. This--what I'm sharing with you right now--is it. He has brought the meaning of the song in this season of my life full circle. Look at/listen to the lyrics..."Anywhere you lead I'll follow. If you need somebody Lord I'll go. If nobody else wants to go, I'm saying Lord...SEND ME..."

6 Then one of the seraphs flew to me with a live coal in his hand, which he had taken with tongs from the altar. 7 With it he touched my mouth and said, "See, this has touched your lips; your guilt is taken away and your sin atoned for."

8 Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?"
And I said, "Here am I. Send me!"

(Remember your free scriptures are used up. This is an OT one. Hint: It's between Song of Solomon & Jeremiah. Happy hunting!!) I said it. I posted it. I meant it. If you're gonna say something to God...you better mean it. Of course, He's loving and picks us back up again when we find we aren't where we think we are or want to be. But, we must take our words to God seriously--we have to mean it. And, OH the joy that comes when we really do "pass the test". At this point in my Christian walk, I've been through enough with the Lord to know what He will do--not specifically, not in timing, but in nature. He never changes. And so, that's why I can truly say, "I'd do it all again". The end is already written. And, that's what gives me the strength to go on. I do not like it. But God loves me more than anything and my greatest desire is to allow Him to use me to the fullest while I am here to glorify His name and purpose on this Earth and then be welcomed home with a "well done, my good and faithful servant". I am NOT failing this test. I refuse. And, I refuse to leave my brothers and sisters behind. Are you guys ready? Armor on (Ephesians 6), eyes up (Psalm 121), mouths OPEN (Psalm 42), attitude corrected (I Thessalonians 5:16-24)...

16 Be joyful always; 17 pray continually; 18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

19 Do not put out the Spirit's fire; 20 do not treat prophecies with contempt. 21 Test everything. Hold on to the good. 22 Avoid every kind of evil.

23 May God himself, the God of peace, sanctify you through and through. May your whole spirit, soul and body be kept blameless at the coming of our Lord Jesus Christ. 24 The one who calls you is faithful and he will do it.

AMEN

Maybe I'll put the following song up if I can find it. In the meantime, I wanted to have some fun. NO more police fun, thanks! Except, actually I think I do have another "police" story that I haven't told you yet. It'll make you laugh. For now, though, I want to address/play a little game on something else. I think it's really neat how God has connected the Christians around the world. I think I told you that my nephew (Alex) commented as he was riding with me "Auntie K, do you listen to anything but Jesus music"? I LOVE the way God works in him. (I have bunches of stories I'm writing down to put in a book for him when he turns 13. I'll have to share some of them with you later. They are cute---and so powerful.) He wasn't tired of it. He was just curious. We had a discussion about it which was fun. For those of you who are curious, the answer is "occasionally". But, I ONLY listen to secular music to keep up with what's going on with the teens in America. God has called me to serve in that capacity and it's impossible to connect if you don't have any idea what's going on in their world. BUT, that is VERY different from feeding your soul with secular radio and TV.

I listen to CCM and Praise and Worship mostly just because I go through so much that I need to be constantly uplifted. There's no better way to be uplifted than to praise God. So, I'm usually listening to something that glorifies God OR am listening to messages. Walk, walk in the Word, Walk in the word. Walk, walk in the word; this is the way,...(hehehe--sry. couldn't resist). I have every CCM station from Greenville, SC (where my bro & family lives) to Richmond, VA (where my best friend lives). This is the part of I-85 I travel most, so that's why. The funny part is, you can always tell when someone else is a CCM listener because they do the same. For those of you who live here...When do you switch from 89.3 to 103.5? right outside g'boro? :) One of my friends accompanied me to Duke a few years ago for a BMA/BMB and when we "hit" a particular exit, she did the same as I do--switch from 89.3 to 103.5. I laughed. Then, going north, we have 106.7 (KLOVE) and 91.1 (Spirit FM). Going south on I-85, it's 89.3 (WBFJ) to 91.9 (New Life), 106.9 (The Light--founded by Billy Graham), then BACK to 89.3 with a different station (HIS radio). So, now those of you wondering or looking for Christian stations, there ya go :) If you want Christian talk radio, of course there's 830 AM. I was elated when they added the Triangle station several months ago because 830 faded out right around Burlington. So, they added 1030 AM which stretched it to just past the state line. And, now they've added 580 AM which goes all the way to Richmond. So, I'm WAY excited. Doesn't take much to excite me, but I'm glad to be able to listen to "my programs" on AM & FM up and down "my stretch" of I-85. There are blessings everywhere & I'm so thankful.

Anyways, I'm sure some of you recognize the songs in my entry. Who can guess, and get them all right first? I want artist and title. Bonus points for year...as in first release year. The reason I threw that in is because there are soooo many people who go "oh, is that a new group"? LOL. Um, NO. That group and/or song are OLD. And it happens ALL the time. It just makes me appreciate salvation so much more. MANY days I can't WAIT to get in my car just to listen to the radio. I ask God in the mornings to play what I need on the various stations I listen to. I also just keep praise and worship CDs in the car in case He has me put one of those in. Although I do pray and read before I leave the house each day, I use the time I'm traveling to spend quiet time with God and I love it. It gets me ready for the day. As we go through Lent, I'm gonna start sharing more song lyrics and ask you guys to "keep playing". A bunch of people need to know these people who sing songs that give us such hope...Chris Tomlin, Mark Schultz, Aaron Schust (I think--I'm too lazy to look it up--someone correct me if that's the wrong spelling), Natalie Grant (who just had twins by the way!), Mercy Me, Steven Curtis Chapman, Building 429, Casting Crowns, Third Day, Delirious, Anointed, Nicole C. Mullen, Avalon, Mark Harris...I could go on and on...and I will...WE will. Share your favorite artists/songs in the guestbook as you enter your guesses on the ones I share. There are so many simple ways to share the gospel and uplift each other at the same time. The Lord commands us to do that. Let's band together and do it. One thing that People Need JESUS...PERIOD. He is the ONLY one who can do anything about this crazy mixed up world. We need help. It's found in Christ. That will be my focus during this Lenten season. That's it for this entry. See you when God leads me back here. It will be soon.

Has anyone else noticed their CCM stations going vintage lately or is it just me? Speaking of vintage...I'll look for this song below and see if I can dig it out of somewhere...

Praise The Lord

When you're up against a struggle
That shatters all your dreams
And your hope has been cruelly crushed
By Satan's manifesting schemes
And you feel the urge within you
To submit to earthly fears
Don't let the faith you're standing in, seem to disappear

(Chorus)

Praise the Lord
He can work through those who praise Him ,
Praise the Lord
For our God inhabits praise,
Praise the Lord
Let the chains that seem to bind you
Serve only to remind you that they drop powerless behind you
When you praise him

Now Satan is a liar
And he wants to make us think
That we are paupers
When he knows himself
We're children of the King
So lift up the mighty shield of faith
For the battle has been won
We know that Jesus Christ has risen
So the work's already done

Praise the Lord...
(Repeat Chorus)

Monday, February 19, 2007 10:16 PM EST

Hi guys. This may be my shortest entry ever. Basically, I can't WAIT to get to clinic tomorrow (and NO I'm NOT being facetious). I will update you when I can. In the meantime, PRAY. I'm fine, but I do need intense prayers right now. I love you guys and am praying for you also. Good night friends and blessings as you continue on this life journey. I'll be back as soon as I am able. Shalom...

Sunday, February 18, 2007 3:31 AM EST

PREFACE: I CAN GUARANTEE YOU THIS HAS SPELLING/GRAMMAR ERRORS THAT NEED TO BE CORRECTED. THAT'S A "LATER" TASK. RIGHT NOW, I WANT TO GET THIS UPDATE UP AND TRY TO GET BACK TO SLEEP.THIS IS A LONG ONE SO YOU MAY WANT TO READ IN INTERVALS OR BRING A SNACK :)(the "English" teacher in me can't STAND misspellings and grammatical errors in final drafts of assignments. But, since I wrote this in rough draft form right into the browser, spelling/grammar won't count til I change the entry. Hey, my page, my rules :)

Of course what God has to say is important. However, the way in which He delivers that message to us often comes in varied forms. There is a whole theological explanation for what I see the Lord doing in and around me. However, quite frankly, I just don't have the energy or clarity of mind to express the "happenings" in that way right now. So, I just thought I'd come on over and update you and come back to the "theology" another day. That's in quotes cuz this is really theology also--just of a different kind. Anyways, I seem to keep getting referred to the police...by many. No, I am not in any kind of trouble with the law--including any instances of stolen food or steroid rage. But, those answers made me crack up mainly because they came from two of my "fellow Duke warriors". We ALL know about steroids. And, we all hate them. But, they help save our lives right? So we take them...no matter how much we hate them! And yes, there's my confirmation that steroids really do cause HORRID side effects. I mentioned NOTHING about steroids in my most recent post (I don't think), but for the people who answered, they went RIGHT to steroids as the culprit. Hahahahaha!! Should tell you a little something about that lovely drug. Anyways, if you'll note the time, it's late and I'm actually starting to get tired. So, you'll get the short version tonight...

My mom called the police because she LOST me. Yes, I was lost...except I wasn't really. I was the only one who didn't know I was lost. She had called my brother...who proceeded to text me a "call me now!" message. (My brother and I text all the time--is how we communicate basically except for the occasional weekend phone call). My sister-in-law (at a different place than my brother) then called me. Now, that's not unusual. I talk to her every few days if not more. The weird part was her first words were "where are you??!!??!!". And, believe me, although she wasn't mean about it, she wasn't exactly just making conversation either. Turns out my purse, somehow, got left in the driveway (DO NOT ASK ME HOW. IF I KNEW, THERE WOULD BE NO NEED FOR THIS EXPLANATION NOR WOULD THE POLICE HAVE GOTTEN INVOLVED) So, I hung up with my sis and called my mom, who proceeded to cuss at me about where I was. Now, for many of you this likely isn't a big deal. But, I can count on 1 hand the number of times my mom has sworn directly at me and on 2 hands the times I've heard her swear period. Soooo, needless to say, I think I scared her. I was fine--just on my way home. She stayed on the phone with me and just kept saying "I'm glad you're ok, but I called the police...you scared the Hell out of me!" Justified. I wasn't mad. I was just sad that I made her so scared. And, now on to police incident #2...But, first, a "mini" health update...

I have been struggling with some health issues this week. It's nothing life threatening. But, I had to miss meds on Tuesday to travel ALL OVER Duke trying to get various tests done because of the complications I was having. So, on top of my "normal" long clinic day, it was a extraordinarily long clinic day...which, I might add, left us with no more answers than we started with. But, for you "outsiders" please know this often happens. It doesn't make it any more fun. But, at least, eventually, you start to expect it even when you don't like it. That way, you don't get your hopes up that they'll actually find something that they are (or aren't) looking for on that "first go round". I'm going 'round again on Tuesday. And although I don't really need answers, I do really need to get fixed. So, I guess you can pray for that. God's already doing that, but I guess maybe just pray more specifically in that direction. I don't even care if the docs figure out what's causing all the stuff to happen. Sometimes that's necessary, sometimes we can just speculate and treat, etc. So, whatever God's plan is, please just pray in agreement with me that He will make it clear. So, now back to the 2nd police involvement of the week.

I think I just had a REALLY long week with the swelling in my extremeties, being very, very tired from not sleeping while inpatient and trying to jump back into work (I've been out and mostly at home between dr visits) too much. Yes, as a teacher, you can work too much from home and apparently I'm great at it. I decided earlier in the year that I was going to do my level best not to bring work home except on Tuesdays because that's the day I have to go to clinic and I can work on it there. However, that kinda went out the window when I wasn't going to work AT ALL. So, I've had to rethink things and have determined a certain time period in which I will do work and then leave the rest trusting God that what He enables me to get done in that time period is exactly what was supposed to get done. It's VERY hard for me to "walk away from" something I haven't quite finished. But, I also want to stay as healthy as I can and overtaxing myself for a few minutes (or maybe hours) extra work is just not that important to me at this juncture. To support that fact, the next incident in the police saga occurred and the people outside the Christian book store called the police to check on me. Why? I was sitting in my car sleeping. Why? I was tired. Why? Because it had been a long week? I don't know.

I DO know that I did NOT intend to fall asleep in my car and have the police wake me up by tapping on the window. He was just very concerned and wanted to make sure I was oriented. He said "well, I don't smell any kind of alcohol or anything". To which I chuckled and replied "I don't drink unless it's with family at a special family dinner (which is completely true--and even then it's only a little wine) So, anyways, he then asks "are you on any medications". I know he already thought I was nuts, but I had to burst into laughter at that one. I quickly tried to figure out how to explain it to him without freaking him out. So, I struck up a conversation about Severe Aplastic Anemia, Cancer, Blood/Platelet donation, and the recent blood/marrow drive. He asked for ID--which, of course--took me 20 (literally) minutes to find because I was awakened out of a DEEP SLEEP...not a nap. Finally, he gave me a flashlight and I was able to find it for him. He thanked me and asked if I was sure I was ok. I said "yes". He suggested (actually told me I should, but suggested sounds better doesn't it?) I go inside and walk around, get something to drink and at least wake up a little more before trying to drive home. So, I did. I wasn't upset by that. In fact, my goal was to actually go into the store to pick UP stuff for church, look for VBS curriculum and to use a gift certificate I had to get something for me for my next Duke trip. So, I just never made it in. Of course, at that point, shopping was the LAST thing on my mind.

One of the employees came over and semi-apologized for calling the police, just explaining that he wanted to make sure I was ok. I assured him it was fine. He again asked if I wanted him to call someone or get me anything. One of my really good friends came to mind and since we both "hang" there a lot--not necessarily at the same time (unless it's planned) but it's a Christian book/store cafe' that we ministry type peoples like and use so I asked if the guy knew my friend and he said, "of course". I then suggested that maybe it would be a good idea to call him. I was a little apprehensive, but you have to understand the relationship. This guy is my friend, but he's much more than that to me--he's very much like my daddy and has adopted me. So, when you're in trouble and you don't wanna call mommy, who's next? (assuming you've already called Jesus, but Jesus ain't comin' in a pink cadillac to come get me, so I needed a "Jesus with skin on" -- minus the pink caddy of course) You call daddy.

Daddy, very lovingly asked me what happened. Then, he said "sounds like you shouldn't have driven in the first place girl". Yeah, tell me something I don't know---but I was really ok before I started out. He didn't get mad because he knew I needed him and that I was already upset about the whole thing. He only gets angry when I've ignored my body and just pushed it beyond ANY limits I could possibly push it. This certainly wasn't the case. I had been really taking it easy and resting (comparatively speaking) for the week. After another lengthy admit, God is definitely continuing to remind me that my body is tired and needs more rest than it used to. I've also hit a period of being a LOT sicker than I have in a while so with that thrown in, it's just hard to sort everything out with balances and how much/how little/how I feel/what I need, etc.

It's a guessing game for my loved ones as much as it is for me. And, it's a definite adjustment for me so I know it's hard for those around me. It was the STRANGEST thing for me to just fall asleep and not know it. I DON'T DO THAT---I JUST DON'T--I'VE NEVER DONE THAT. If I am going to sleep, then it's deliberate. Thankfully, I was oriented and knew where I was, the date, etc. Of course, all of you who are worrying about me falling asleep at the wheel, stop right now. I will NOT do that. If I'm feeling tired before driving, I just won't do it. I always put my keys in my pocket when I'm in my car alone and am getting too tired. This reminds me to call someone immediately or alert myself that I may need a ride as much as I hate asking for help. I don't wanna die from stupidity nor do I want anyone else to. So, there are ways to work with that. I'll give you a prime example:

Last night after all that happened, I HATED to call and ask for help. But, after the police were called and came to check out of concern and the employee then took the time to come over to check on me out of concern and asked if I should call someone...Had I been stupid, I would have tried to drive myself home. But, I'm not stupid (at least not on this front) I have ALWAYS told my friends that I will NOT drive somewhere if I don't feel like driving. And, I've kept that promise. Calling my buddies (or actually, my buddy--he called my best friend at work to meet him there to help me (guess they didn't know if I was passed out or what. But that's what awesome friends are for. They are there for you in a heartbeat if they can be. And, I am so blessed. No where that I've gone has left me with no one to call on who I knew without a doubt would drop everything to come help me. Thanks to my buddies that did that last night. I will write them notes later, but I praise God for blessing me with TRUE friends--not "lip service" friends. There's such a difference in having people who will walk through the fire with you and stand there on the other side while you hurt then take your hand again and keep on walking right beside you--never skipping a beat. I have SO many friends like that and the only explanation is the divine power of the Holy Spirit. He knows how many people like this I need to help with this battle in every way and He posts them on every wall waiting for my need to surface and my heart to cry out. If it's God alone I need, He runs to my aid. If I have needs He prefers to use others to meet, then He strategically places them so that we always have the beauty of seeing Him work through the storm until the waters calm.

I LOVE being a Christian. It's the hardest thing in the world to do. It's also the most rewarding. God has put me in a position to touch the lives of countless young people and I can't WAIT to get back to them in order to help them walk in the calling that God has placed before them. Theirs is so distorted by such disjointed lives that it's difficult, but certainly not impossible, for them to believe they can "do it". God uses not only this testimony, but the others I've been through the years to show them how it is possible to overcome adversity and live productively. And, it's awesome to watch their faces light up when they look at you and know that you are being honest with them and they actually BELIEVE you. No greater reward--planting seeds here and there---watering them everywhere. This should hold until I get back. Tuesday is clinic again. Yucky drugs. Be in prayer. I'm always in prayer for you guys too. You are loved. Shalom...

Thursday, February 15, 2007 11:28 AM EST

BEFORE YOU READ "MY" UPDATE--WHICH IS EXTREMELY IMPORTANT--I'D LIKE TO ASK YOU TO PLEASE PRAY FOR A FEW OTHERS FIRST...MY FRIEND KATIE, MY FRIEND JENNA, "LADYBUG" KATIA, MY BEST FRIEND DANA, MY NEPHEW ALEX AND MY GRANDMA. THEY ARE FOR DIFFERENT REASONS, BUT THE LORD HAS PUT THEM ON MY HEART TO ASK YOU TO PRAY FOR THIS MORNING. I WILL BE MORE SPECIFIC AS THE LORD LEADS ME TO. THANKS. NOW FOR THE BEGINNING OF "MY" UPDATE...

The game from the last message will have to be completed at a later time. Keep playing though. It's directly related to the latest news. First, before I update on me, I ask that you pray for some brothers and sisters of mine who are having a particularly difficult time right now. There are those in the PICU, those on the Unit, those outpatient, those in clinic, those on neutro iso, those on dialysis...the list goes on and on and on and the updates are all relative. It's one of the things that makes this journey so intense and difficult. A "stable" day in the PICU could mean someone is doing "well". A 105 degree fever day may mean someone is doing horrible. Obviously it seems that being out of PICU would be better than having a 105 temp, but you get my drift. I just have to keep saying that. Let me put it to you another way...

Many, many people on many levels of understanding read these web pages. As Christians, it's important for us to help each other pray EFFECTIVELY, no matter the situation. This applies in every case where prayer is necessary (which, by default, means in EVERY CASE PERIOD). Just because we're Christians, it doesn't mean we automatically have divine revelation of the struggles people face or how to deal with/pray about them. YES, we have an "uberstrong" (---: ) for the young-uns) connection in Christ. But, we can't allow that Christian connection to cause us to assume that we are experts on our friends/loved-ones' situations. If anything, just like with salvation and the "the more we learn about Jesus--the more we realize we need to learn about Jesus" principle, watching our loved ones suffer (and suffering along with them) should make it MORE obvious how much we have to learn about each other and our life situations. This is the family of God. God sets the lonely in families--there's your "scripture lookup" for the day. :) Try Psalms. And, there's another scripture that comes to mind here and I will stop and then continue on later...really, simply because the Lord is leading me to stopping with a "Selah" moment before He has me go on as this is a pretty important prayer request update for me. And, the Word of God reads...

7 Give the people these instructions, too, so that no one may be open to blame. 8 If anyone does not provide for his relatives, and especially for his immediate family, he has denied the faith and is worse than an unbeliever.

Some people mistake this to mean simply "one's own immediate family". However, there are 2 reasons to consider that the meaning may go deeper than the relationship of those with whom we have natural blood ties. The first is the "and especially" phrase in italics above that indicates there must be some kind of distinction between members of types of families...

I SO apologize guys, but I am going to have to cut this short, so it TRULY is going to be a Selah moment. This next section is theologically detailed, I can't think clearly enough to express it in the way I know the Lord wants me to right now because the words just aren't coming quickly enough and I have an appointment. Sooo...you're gonna have to wait. I promise to be back as soon as I can as there are MANY prayer and tangible needs. Please keep checking back and hopefully we'll be on the same page soon. Blessings, peace, love & prayers to you in Christ until I return.

Sunday, February 11, 2007 7:37 PM EST

...there is no shadow of turning with Thee. Thou changest not, thy compassions they fail not. As thou hast been thou forever shalt be. I love that hymn. I sure am glad that I can't really watch basketball this season. It looks like we are having major problems. For those of you who missed that...I am on MEGA BP meds (120mg Procardia XL 10 mg enalapril--for those "in the know") due to some drug side effects, so it is just NOT a good thing for me to let my blood pressure go too high as it is already elevated. If you know me and ACC basketball, you get my drift. If not, let me just briefly say that ACC basketball is my PASSION (next to Jesus) and if I were allowed to watch all these games, I'd probably stroke out from all the excitement. Soooo, thank you ATG, steroids, FK and whatever else I'm on that's causing the elevated BP. That was just "mini-update". I leave you hanging with some interesting tidbits that might get you to sign the guestbook before I update again. Hey, what's wrong with a little blackmail? If you already know, you are ABSOLUTELY not allowed to tell! My mom had to call the police on me the other day...Friday, to be exact. Guess why??? (Yes we still love each other and are still speaking--quite amicably--so, don't worry on that front). When someone gets "close" I'll update. Get to guessin'...

Wednesday, February 7, 2007 8:15 PM EST

HAPPY BIRTHDAY TO ME, HAPPY BIRTHDAY TO ME, HAPPY BIRTHDAY DEAR MEEEEEE!!! HAPPY BIRTHDAY TO ME! IN CASE YOU HAVEN'T CAUGHT ON, MY BIRTHDAY IS TODAY!!!!

I am 31 years old and I don't care who knows it. The alternative is dead. So, for every year I get to spend here---HALLELUJAH!! SOOOO many fret over people knowing their age. WHY? You either grow old or die young. Just one of those things that baffles me I suppose. I am sure it's one of those "fringe benefits" of never taking any minute of life for granted. So, when someone asks my age, I see it as an honor rather than an intrusion. Thanks for asking! I am a no make-up, go with the flow, dress up for fun sometimes, don't mind going anywhere in jeans and sweats, constantly traveling with the "extras" just in case there's a hospital stay or unexpected illness to throw the "plans" off course. Saddle up your horses--all you SCC fans :) we've got a trail to blaze. Through the wild blue yonder of God's amazing grace. Let's follow our leader into the glorious unknown. This is a life like no other. This is the Great Adventure...

It really is an adventure, and I LOVE watching God at every turn. I can't really watch basketball much this season. Why, you ask? It's one of those things that people "on the outside" wouldn't necessarily think about much. But...I LOVE college basketball---especially of the "big four" variety. However, I get very, very excited and intense about it. This, in turn, causes my BP to skyrocket. Not such a good thing. So, I can only watch sporadically. Bummer. You'd never think of something so miniscule affecting your health would ya? But, it has to be done. So, I will be cheering my team on...but only watching sporadically. Unless, of course, my Dukies start winning by double digits and keep the lead. Then, I can watch to my heart's content. It's really a minor thing, you know. But, I wanted to mention it simply because when we say these illnesses affect EVERYTHING...we mean it. How strange that a watching a sporting event from the comfort of your own home would be a health consideration. God is good. All the time. Happy Birthday to me. I thank God for all of you who surely make this life worth living as I live and breathe to worship & serve Him, all the while looking for ways to bless you as you've so tremendously blessed me both individually and collectively. Good night friends. I will return as soon as the Lord allows and leads. Until then I hold you close to my heart and up to Him in sincere prayer. Shalom...

Sunday, February 4, 2007 5:41 PM EST

You know, it's funny how much of this journey you guys out there who are trying to support us without the luxury of the "serious illness" experience do not realize what you're missing. Am I saying that to sound mean or callous, as if what you have to offer isn't good enough so that you just shouldn't try? NO. Am I mocking your efforts trying to make you feel worse because you don't know what to say or do? NO. I am saying that because I want to THANK YOU.

The WORST thing in the world you can do is bail on someone when the journey gets hard. It's better to NEVER offer support than to support someone and then jump ship when the water gets deep. Jump in for the long haul or stay out of the water. Thanks to those of you who have "stayed the course" with me...There are too many to name. Not knowing whether what you are doing is right, wrong or neither, but having the courage to walk along side me as we try to sort it out together has been my biggest blessing--the journey is the blessing when God is glorified. There is no rule book you know. We have to take the circumstance, bathe it in the word of God and come up with the most holy response we can. The only way we can do it is with the I Corinthians body working together--go look it up :) (I'll even be nice enough to give you a hint. It's between 11 - 13!

Thank you for understanding the "medication & treatment hardship" this causes our entire families. Ever try maintaining 2 households while fighting for a loved one's life...or even maybe your own? Taking care of 4 kids as a single mom with cancer? How about trying to keep life "normal" for other siblings when their brother or sister is literally in need of every penny you have and most of your attention so that they can live and be properly cared for at the hospital, adherence to med regimens, etc. Makes money for little league seem kind of unimportant. BUT, little league IS important for a 9 year old kid who wants to be a 9 year old kid despite the fact that his brother or sister has cancer and they can't take the money away from the "cancer fund" to pay for sports equipment.

I always felt guilty (and still do) when I was younger because I KNEW I was causing my family tremendous hardship emotinally, mentally and financially. I take between 20-30 medications depeding on the day. Like it? NOPE. Take it? SOMETIMES WITH GREAT STRUGGLE, BUT YES. How? This is simple: I'LL DIE WITHOUT IT. From Dr. K's lips to my ears after we were able to bring me back without an emergency transplant (very bad option for me at this point) this Summer. And, I do mean "brought me back". This Summer was SCARY. There's so much I haven't shared. And, quite honestly, going back in for these last few weeks has been the first time in a LONG while I've had trouble actually visiting and being back on the Unit for any significant period of time. But, I did it. Why? Because I want to live so I had to. I also needed to just realize and believe God would give me the strength to do it again. He's brought me out of there so many times. But, with everything that happens in "our world", you NEVER assume that you're going to be walking out the door or in what state. Just reality. We play hard ball here. The first several days of this most recent admission were REALLY rocky. The last several days were nothing short of amazing. That's really the God I serve and He is SO faithful.

There are more examples I could give. And, this is in no way, shape or form what I intended to post here tonight. Apparently the Lord had other plans. So, I am being obedient. Please, PLEASE don't be offended if you didn't "mak the list". I appreciate everything everyone has done. These are just the specifics God has given me for tonight. I love and am grateful to everyone for playing the role that God has asked you to play in my life and mine in yours. I always have to do that because I don't want people to feel slighted. There is no one person on the planet any more important than anyone else. We all just have different roles. If we are secure in the fact that we are playing the role God has given us to play, there should be peace in our hearts. So, if the devil tries to tell you that you're unimportant or what you do doesn't make any difference, just do what I do...Tell him to shut up and keep gettin' it. He'll leave you alone if you do that enough--once He realizes you're firmly planted in Christ. Resist the devil and He will flee!! That one's from my favorite book in the bible--look it up. I should start doing contests with these "scripture deals". Would be a great way to get the guestbook filled with scriptures. Anyways, I digress. Let me close and try to get ready for tomorrow. More appointments, etc. and disscussions on what I've missed at work and am returning to. I have good news to share there too. One thing at a time though. Be patient :)

So, anyways, to continue, I will leave you with some things God has put on my heart for us to ponder together:
(**note: if you 'don't wanna hear it', now would be a great time to skip the rest of this entry and come back a different day. I'm not talking "TO" anyone, but this could be misconstrued that way if you aren't seeing eye to eye with the Lord right now. And, I don't want you to allow any of what I'm about to say to give the devil a foothold in any area of your life.**) So, my advice, is to search your heart to see if you want to be challenged before you proceed. Now, then...

...ponderance on prayer. Prayer is (often) a cop out. Is prayer important? ABSOLUTELY. I would even dare to say prayer is CRUCIAL. But, inevitably the answer is YOU. Many treat prayer as a laundry, grocery or some kind of "God's to do list" as we talk to Him about things. Prayer is, by definition, CONVERSATION. If you don't give God a chance to answer you...it's not prayer cuz He's the only one doing the listening and you're telling Him things He already knows. He's waiting on you to shut up so He can tell you what to do. (me included--I'm not even going to try to pretend I NEVER do this, but it's on my radar and is something I regularly "check myself to see if I am in the faith" on).

I don't know how many of you have seen the skit (based on a true story) that depicts a man in a hole needing help to get out. So, he yells at all passersby hoping to get a helping hand to get out of the pit he has fallen in to. Many people just pass and ignore him, many pass and pause to pray for him to be able to get out then go about their day, and 3rd, someone FINALLY stops, helps the man out of the hole, then prays and talks with him leading him to Christ in the process and then giving him a few dollars to help get him into a place to live, good church, etc. where there will be discipleship & follow-up.

Moral of the story: YOU have the money and the talent and the organizational, legal, medical, and social skills to help. God has given them to you as blessings so that you can find your niche in the building of His kingdom here on earth before He calls you home. Faith without works is DEAD. If you're going to pray, great. Then get up and DO what the Lord responds with after you pray. Give, serve, speak, advocate. $1, one fundraiser, one 3-day fast, I could go on and on...may not seem like much to you, but dollars and service add up especially during life-threatening medical situations. It's akin to saying, regarding salvation, "I believe there's one God". What was Jesus reply? Nothing like the scripture to make it plain. Here goes:

Faith and Deeds

14 What good is it, my brothers, if a man claims to have faith but has no deeds? Can such faith save him? 15 Suppose a brother or sister is without clothes and daily food. 16 If one of you says to him, "Go, I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it? 17 In the same way, faith by itself, if it is not accompanied by action, is dead.
18 But someone will say, "You have faith; I have deeds."
Show me your faith without deeds, and I will show you my faith by what I do.

19 You believe that there is one God. Good! Even the demons believe that�and shudder.

That was for all those:

* I go to church
* I donate to the church
* I believe in God
* I think Jesus was a good man
* I do lots of things to help the church

That's all great, but do you love God? Do you believe that Jesus was His only Son and was sacrificed for the sins of the world? If not, all those "I" statements up there put you right on level footing with the demons. And they SURE won't be in Heaven. I always get in trouble with this, but, what the heck--I'm on a roll...

Why do people get mad when they say they hate Jesus/God but then get defensive and look at you funny when you tell them that if that's the case, they won't to go to heaven. Don't know about you, but I don't have ANY intention of or find any joy in the notion of spending eternity with anyone I hate. Do you? Only the Father knows everyone who will be there, but if you hate Jesus and openly admit it, why in the WORLD would you even contemplate spending eternity with someone you hate??? Hate does not exist in Heaven. So, if you harbor hate in your heart toward ANYONE, you ain't goin'. It's really that simple.

Serving the body of Christ, IN EVERY WAY, is the job of the church, NOT the government. Instead, we all look around for government money and assistance that is somehow supposed to just fall out of the sky? NOT. And, for those of us with all these rare diseases that get little to no funding, it's crucial that individuals make personal donations to families to help ease the burden OR donate to the ongoing research for that particular disease. My disease is considered an "orphan disease". That's fancy talk for, "there aren't enough people with this for us to invest any significant dollars into researching it at length--sorry". And, yes folks, much of the time, that's it. There's no where else to go. And people die because they simply cannot afford to live. We'll spend a dollar on a lotto ticket (well, not me cuz I don't think it's holy to play the lotto, but that's a different story for a different day--although, if you are really that curious, drop a guestbook note and I'll answer it next time I update). In the meantime, think on this...

...One day it will be you needing the support to pay essential bills and despite working just as hard as you can, you find yourself drowning with no way to pay for treatmemts you need to save your (or your loved one's) life. What would you want someone to do for you in this situation? Who are the people who give to Duke Children's & St. Jude & the list goes on and on and on...US. Those of us battling every day. Those of us who would literally give our last dime to someone else on the floor if they needed it. Those of us who are too tired to cook, but manage to whip up or scrounge up enough $ to make sure we all have at least a little to eat. Becky (sarah's mom) in one of her recent guestbook entries wrote: "the outside world has no foggy idea what kind of suffering goes on up there". Well, now ain't THAT the truth. Remember, we didn't ask to be in this club. The joy in it, for us Christians anyways, is to know that it's all temporary and cannot even begin to compare with the glory of the Lord and hearing "well done". But, guys, in the meantime, it's HARD. Here are some practical things to do.

* Random acts of kindness are great. I don't want to get into trouble for calling names for fear of leaving someone out. But, these 4 examples are just burning in my heart which means God wants me to share them...

Ex. 1 - When I was fighting for my life this summer and had not been able to check websites as I normally do, I got a call from Becky asking if I'd be up for a visitor. OF COURSE, I jumped at that opportunity because it was obviously GOD SENT. Upon visiting, I watched as Sarah gently held her arm board to help keep her peripheral IV working for her many tests. I then found out she had relapsed. While there was a solemn moment there, there was a bonding that took place that cannot be explained with words. There we were, knowing what the other was facing, understanding the difficulties and yet all (Becky, Sarah & I) all realizing God had it under control no matter how out of control we and our loved ones had felt. They could have been fully focused on their battle without remembering how others suffer too, but we can't. Because we KNOW that we NEED and can SUPPORT each other. That's why they came to see me. And THAT'S why I was so delighted to see them. Powerful moment...

Ex. 2 - Eleasha, one of my dearest friends, allowed God to use her to send the exact amount that we needed to pay a particular bill this summer. At this point, we had NO CLUE how it was going to get paid. I was thrilled when Marion said someone had sent something and could not imagine who in the world would have done that. Eleasha and Greg...after having Cody returned to Jesus MUCH sooner than anyone would have liked, took it upon themselves to pray, be obedient and ease MY burden. They knew the drill of how much it all cost and how difficult the balance was.

Ex. 3 - Carrie has been there, Ellen has been there, Alicia has been there, Viesta, Richelle & Joe, Mike & Marian Mitchem...one hug after another, one call after another, shoulders, financial support. Jenna & Kay constantly pray for me and I know that Michelle checks on me all the time even though she doesn't sign in all that often. I hope you're doing well Michelle. I miss you!!

Ex. 4 - I want to end with some very special "cyber" friends. Alison has been an absolute GOD-SEND with her care packages. I cannot tell you the exquisite timing of these items--again from someone who has lost a child along this journey and is very pregnant with another due SOON. Kathy has been AMAZING with diligently sending cards & financial help. And, that is the epitome of what I am talking about with these Godly interventions. This lady showed me the world this summer from my hospital room. She continued to send cards once I got home and even sent something for my mom. Now, this time, again, I find her dropping notes of encouragement in the mail. It takes 2 seconds (ok, so maybe 5 minutes) to do that. Why can't/don't more people do that? You'd be surprised how a little piece of mail mixed in with all the medical bills you can't pay gives you just a little more strength for the journey. And, this last one is with my friend Tracy. Tracy and I have been "cyber buddies" for YEARS. We lost track a little bit as things got so crazy, but we never forget about each other. She was kind enough to offer to help with our blood and marrow drive being held at my school this week and has offered further personal assistance to me with whatever I need. Again, I am humbled by God's grace.

I have so much more I could share, but I need some relaxation and TV time before bed. I'll have to share about my nephew's party on the next entry. As I said before, I don't know quite why God led me this direction tonight, but I'm sure He did. In a general sense. I'm sure it's because He wants to bless more of us. Since His Word clearly tells us it's more blessed to give than to receive, I'm sure He wants us all to step up the giving because He wants all of us to be more blessed. We have to do it in His way and in His time. He has blessed me to be able to share some genuine examples of what He means through acts of kindness that have entered my life because of His grace. So, I hope this entry changes you or someone you know to pray and then get out and DO something you aren't currently doing in order that the Lord may abundantly bless you beyond your wildest imaginations. Love and blessings to all of you until God brings me back here. And, yes, I will be PRAYING as always and serving where God leads me. In the meantime, you know you can always call on me. Blessings for everyone until we meet again...

Saturday, February 3, 2007 9:24 AM EST

I apologize greatly to those of you whose fingers are glued to the "refresh" button on your browser waiting for a status update. You'll be happy to know that I'm writing this from Greenville, SC. Which means, YES, I AM OUT! So far, so good. I had cultures done on Tuesday (off all IV antibiotics) and "no growth" thus far. This is a MAJOR PRAISE. However, please do not stop praying. These cultures can grow up to 7-10 days out. Three days is just the usual "marker" where they expect that if something IS going to grow, it would do so within three days. As we all know, NOTHING about my journey is "normal" so please keep up the prayers until I can update and tell you I am still outpatient and there is NO GROWTH and my counts are holding. I was transfused with both platelets and red cells a few times before being sprung and I got a neulasta shot (can we say BONE PAIN) when I got cultures drawn on Tuesday. My nephew's 7th (I cannot EVEN believe I am typing that...He CAN'T be 7 already, can he? WOW.) birthday is tomorrow and his party is today. The ONLY way I was missing this was if I could not walk. I can and so here I am. I will be gradually transferring my energy back into "real life" slowly. And, just for the record, I will be pulling for the Colts tomorrow :) :) :) Any of you who sent stuff to the hospital, they will forward it to me. But, now that I expect to be home, you can use the He Cares address---Box 1404, Lexington, NC 27293-1404. For those of you who already have my home address, feel free to use that. I just don't want to post it out here in cyber space so I'd rather people who don't have that address use the ministry P.O. Box instead. Speaking of gifts, thanks for all the emails, notes, cards and mailed gifts. I appreciate them MORE than you know. You are loved. I'll be back when God says. Praying for you in the meantime...

Monday, January 29, 2007 8:08 PM EST

I had no intention of updating tonight because I am spent. No worries. Things are ok. But, I need you to pray, pray, pray. Basically, you all know I was septic. We have now discontinued all IV antibiotics and are praying that the infection stays away. If not, it more than likely means surgery, more antibiotics and then more surgery. So, this is "moment of truth" week and I need you guys to stand with me and pray that this infection is GONE and will not come back off IV antibiotics. Sorry, I know this isn't a very thorough update, but it's what I need most right now. I will update again in the next couple of days. Cultures are being drawn tomorrow @ 9:30am. For those of you who know the drill, you understand that we have to wait 3 days. For those of you who didn't know that, now you do. Please know that I am thinking of and praying for you as always. I'll be back with more news as God leads me to update. Blessings!

Tuesday, January 23, 2007 11:27 PM EST

Well...I guess I kind of lied to you, but it was in no way intentional. I promised that I would come back with a more "medical" update after I got some uninterrupted sleep. I have to be more careful about the way I word things sometimes because the truth is, I generally have NO IDEA what God is going to lead me to post in the next entry. There are times when He gives me a "series" of posts. But, usually, it's whatever the moment has dictated. So, this won't be so medical. I DID want to let you know that I have felt your prayers. I did get uninterrupted sleep and let me tell you how it happened. It's so neat to watch God work. I had been praying for sleep for a while. It's always important to pray God's Word (because His word never comes back void--Isaiah 55:11-12), so I was praying Psalm 127:2b (for God grants sleep to those He loves) over the situation. It just wouldn't come. But, after I asked you guys to pray for that specifically, our combined prayers (scripturally referred to "praying in agreement with other believers" which we are commanded to do) in addition to some "God ideas (no, that's not a misspelling of "good", I do mean GOD ideas) about how we could physically work the "hospital schedule" to get me more sleep, worked TREMENDOUSLY. Allow me to share...

First, I want to answer the guestbook entry question about cutting out caffeine a few hours before sleep. The answer to that is "NO". I have cut out caffeine PERIOD. I can count on one hand the number of drinks with caffeine I've had since June. I have tried getting up if I don't fall asleep right away, making the room gradually darker to match circadian rhythms and line up with melatonin levels in the body, music with words, instrumental music...I have a degree in behavioral psychology and worked in a sleep disorders clinic a couple of summers when I was an undergrad at Duke. BELIEVE me, I've tried every behavioral sleep intervention that I learned in pursuit of my Duke degree, and read about since. Very simply put, it's just steroid insomnia and you have to wait it out. I finally asked for some sleep medication the other night because I was literally about to lose it. I was delirious with exhaustion. It helped and I got about 5 hours of sleep. Then last night although it wasn't all consecutive, I got about 6 hours of sleep total which was very nice. But, taking into consideration that I am on SOOOOO many meds, I HATE taking non-essential meds. Of course, at this point, the sleep med was no longer "non-essential" because I needed some sleep for my sanity. It is next to impossible to appropriately deal with stress without at least some sleep. As far as the "hospital schedule" goes, I asked them to program the pumps to switch all my meds over to KVO on D5 when they're done so I don't have to deal with the beeps, to silence the monitors in the room, to call them to do routine lab draws when I wake up instead of 2am or 4am, and to open the blinds to see if I'm sleeping instead of knocking on the door. The combo of these things and prayer have given me some much needed rest. So, that's a very long answer to a very short question. The good news is, we prayed together and I got sleep. Moving on now...

Today was absolutely one of those ENCOUNTERS WITH GOD kind of days. I switched from tears of sadness and despair before sleep to tears of joy and thanksgiving after sleep. And, when I say there were GOD encounters, I mean in a MAJOR WAY. I'm going to hold you in suspense. I will tell you that I spent HOURS in worship, just pure, ugly, get on your face with God worship. I SO needed that. And, God spoke SO CLEARLY to me--about this admission, about my health situation in general, about His presence and His glory. It was absolutely amazing. THEN, IT GOT BETTER. Everything I had prayed all morning during my worship here in 5208 started manifesting. God kept sending people by for me to talk and minister to. This is not the first time that has happened. I've had PLENTY of admissions where that has been the norm. But, it just hadn't happened in such a powerful way in a looooong time. I spent 5-6 hours being blessed by the opportunity to share the gospel with people who "just happened" to stop by. That's in quotes because I don't believe in coincidences. One of "my Christian mantras" is "there is NO SUCH THING as LUCK in the life of a Christian". ' I've removed that word (luck) from my vocabulary as it applies to the reason for any event. It's ALL ordained and divinely appointed by God. Yes, He gives us choices--we're not robots. It's up to us what we do when He sends people knocking.

I had specifically prayed earlier in the day for the Lord to allow people to tangibly FEEL the presence of the Holy Spirit when they walked in today. He didn't make it happen once. He made it happen over and over. I shared and let them share, hugged them while they cried and cried with them. It was amazing. I am so blessed. I am going to leave you with the verse He led me to during my time of worship today and the last thing He told me before He started sending people in. You'll have to come back later for the rest...

1 Peter, an apostle of Jesus Christ,
To God's elect, strangers in the world, scattered throughout Pontus, Galatia, Cappadocia, Asia and Bithynia, 2 who have been chosen according to the foreknowledge of God the Father, through the sanctifying work of the Spirit, for obedience to Jesus Christ and sprinkling by his blood:
Grace and peace be yours in abundance.

Praise to God for a Living Hope

3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4 and into an inheritance that can never perish, spoil or fade�kept in heaven for you, 5 who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. 6 In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that your faith�of greater worth than gold, which perishes even though refined by fire�may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9 for you are receiving the goal of your faith, the salvation of your souls.

It's not like this is a verse I've never read this before. I've read the entire bible several times over. But, that is the beauty of the Word of God. You can read the same verse at different times and in different seasons and get a plethora of different things that are all scriputrally appropriate in the way God chooses to reveal the truth of His word to you at that particular time. I tell you. My God is AMAZING. I am about to get platelets and antibiotics and have just had some ben/phen & tylenol (this will only mean something to you if you "live" in the hem/onc/bmt world in some capacity--no time to explain now, but you can ask someone). So, I need to close. I have been trying to get out of my room every day to get some "fresh air". I didn't make it today--mainly because God kept sending people for me to minister to (and to minister to me--it ALWAYS works both ways). But, the last thing God told me during worship this morning was this:

"No amount of fresh air is a substitute for the loving touch of the hand of God."

You can exercise, walk, get fresh air, get up, get dressed and all those physical things that we are "supposed" to do in order to take care of our mental and emotional health--especially when we are in stressful situations like being inpatient. But, if what you need is a touch from God, none of those things are going to satisfy that need. I needed a touch from God. I knew it. However, there is a gap between knowing (by revelation of God) what you need and getting/receiving that need. Since this is already so long, I'll try to share the details of how God worked that out this time, but the bottom line is: I had to IGNORE the advice-- unsolicited, I might add-- of several people who love me and were encouraging me to "get out". But that's ok because it was well meaning and sometimes does that to give us a gut check on Galatians 1:10. Look it up! You already got your "free scriptures" for the update. For those of you who are new to my site, I like to give people a reason to open their bibles :) Open up and read the verse...ok, now that you know what it says, consider this. Had I listened to those "well meaning" people, I would not have been here in my room to do what I was supposed to be doing as far as God's intent to send people here. I love Jesus...SO MUCH. And, I love you. I will be in prayer about what else God wants me to share from today. Believe it or not, what I've shared is just a glimpse. God is so faithful. I'm praying for you in the meantime. I'll be back when He brings me back. I'm sure it will be soon. Thanks for praying. Please don't stop. Your prayers are such a huge part of my testimony and I have no words to thank all the people who have faithfully prayed me through all the joys and sorrows of this life. God's ability to surround us with His love is truly amazing friends. Good night & God bless!!

Sunday, January 21, 2007 7:12 PM EST

Time for an update. This will be brief. I know you don't believe me, but read and see...it will be. I am simply too exhausted to do anything more than a quick update. I slept all of 40 minutes last night...or actually, it was this morning. I caught a nap from 6:20am - 7am. Those of you used to 7am - 7pm nursing schedules know that this is the time they are doing report. Here's the report: Khalita has not slept more than 10 hours in the last 72 hours and is extremely exausted as a result. Additionally, she received meds that made her throw up even after anti-nausea meds, is in pain from the neulasta, shot that she got on Friday, is having hot flashes and is very emotional from the lupron (read "drug induced menopause") shot she received...also on Friday, is incredibly homesick missing and wanting her mommy for comfort after returning from a 4-hr pass yesterday while the "audience" at the local shopping establishments stared at "they girl in the mask" & her mom, and seems to have caught a little bit of a cold. Her kids have state exams next week which is not going to be able to prepare them for and she is holding on to Jesus with ALL HER MIGHT realizing that things could be much, MUCH worse, but praying for deliverance from the current trial.

That's it my friends. It took me until 5pm to get dressed and out of my room today. As I mentioned above, last night was VERY long. As a result, today was also very long. I sent a text to people to pray and admittedly, God was faithful and I felt the prayers lift my spirits. They are nothing near "normal", but any improvement is a blessing. I hate being so teary all the time, but it's just so hard to go out and then have to come back up here. Also, I think I am dealing with emotions from the Summer. If you missed this summer's drama, read the history. I had a really rough time. Those of you who are prayer warriors, my biggest request now is for some long, uninterrupted hours of sleep. Once I get some, I'll come back with another update that will be more "medically detailed". I love you guys and continue to lift you up as well. Blessings in Christ until He brings me back.

Thursday, January 18, 2007 10:39 AM EST

Hi friends. First, let me say God has been so good and so faithful through everything I've endured over the years. I certainly have NO reason to complain. So, I won't be doing ANY of that. There is, however, a time for just allowing me to share my heart regarding the struggles I've endured. I am inpatient (obviously) for a bacterial infection in my blood--techinically sepsis. We've been battling all sorts of infections for the past several months and it all just culminated in (what looks to be) a fairly lengthy admit. My faith is strong, I am not afraid, and, relatively speaking, I am not terribly ill...physically that is. Emotionally, my heart is very, very broken as I have been trying VERY hard to do my best in every area of life (work, church, etc.). Yesterday was a particularly difficult day with being sick and I did a fair amount of crying on and off. No one is here with me because mom has to work. She has been visiting when she can. When I first got upset yesterday, I REALLY wanted to call her and ask her to come down to visit. However, I was NOT about to ask her to do that after she had worked a full day. So, in between the tears, I just tried to keep praying for comfort and to keep myself busy...until the evening. I was just so lonely.

Jesus is here with me and I just began to cry out in prayer saying that I knew He'd never leave me alone and that He knew exactly what I needed. I asked Him that if I really NEEDED someone to visit, He would provide that. Don't you know that just, and I mean JUST, as that prayer ended, my mom walked in the door. I was elated and said "HI MOMMY!" through tears. Of course, she immediately saw my teary eyes and asked what was wrong. I told her I was lonely and was just praying. So, she sat on the bed and gave me a huge, safe, secure hug while I cried. Then we talked and watched some TV together. Then I walked her downstairs to leave and came back upstairs...and started to cry again because I wanted to go with her...or for her to stay with me. We can't always have what we want though. I need to be here and, as I said, she needs to continue to work because she's the one helping me with medical expenses (which I feel incredibly guilty about, but that's another entry all in itself). She should be enjoying herself and her money, not spending it on me. Of course, it's not like I think she minds helping me. I just wish I could be more financially independent so the burden wouldn't be so heavy for her---especially with my dad not here to help.

Anyways, overall, things are ok I guess. It looks like I'll be here a while. I'm trying to just let God embrace me each day and take it a minute at a time. It's very hard, but I know God's grace is sufficient. I cling to every one of the Lord's promises knowing that I will be just fine on the other side of this. I am sharing my heart with you so that you will be able to share in the testimony as God brings me through this--not because I am depressed or hopeless (although these feelings do come now and again). Quite the opposite, in fact. I am just very weary and intermittently very lonely--a difficult combination. Because of that, I haven't put up a list of needs and requests. You guys know how to pray, so please just keep it up until I can give you more specific details. As I mentioned in a previous update, if someone wants to send something and you aren't sure if I can have it or if I already have it, please just ask. The most important/specific request would be that my lines would clear so that I don't have to get them pulled. And, of course, please pray for me to stay encouraged. This is a time when I need my family in Christ to carry me a little bit. I realize that things could be so much worse. That, however, doesn't change the fact that my journey is difficult and there are times when I just have to ask and rely on my brothers and sisters in Christ to pray me through it. That's what I'm asking for right now. Please know that I will be praying for you too, as always. I'll be back soon with a "medical" update. You are loved.

Sunday, January 14, 2007 11:25 AM EST

Howdy friends and neighbors! I'm currently waiting for my laundry to finish and thought I'd update. (Why in the WORLD am I doing laundry in the hospital? 1 - clean clothes are good! 2- keeping some kind of routine--make bed, get dressed, clean up, etc. makes discharge easier) I started laundry yesterday and would be finished by now except for the fact that I didn't fold right away (because I wasn't here when the clothes finished) and many of them became very wrinkled. Sooo, those clothes are currently participating in the "wet towel in the dryer" ironing experience. I'll fold, put away and will probably be ready for a nap by then.

There are lots of details to share with you, but I'm going to wait until my drugs and rounds are finished to post anything. As far as "general stuff" I have to be hooked up to the monitors now. I haven't been feeling so well (but I am OK so please try not to worry!) Any of a number of things could cause me to feel bad. So, instead of going on a wild goose chase trying to figure it out, we are just going to monitor and treat symptoms as they arise. The BIG prayer request for now is for some "negative blood cultures". The infection this summer contributed to my marrow crashing and that is not an experience that ANY of us care to repeat. I already had to get platelets, so that's not the correct direction as far as the improvement party goes. I need stable counts and clean cultures. Pray in agreement with me as we wait for "today's info". Love you. LOTS! Huggies until we meet again :)

Saturday, January 13, 2007 9:28 AM EST

Ok, so FINALLY you're going to get a "semi-thorough" update. It depends on how long my energy lasts. Many times my head and my heart are convinced they can do more than my body will allow. You know, the whole "spirit is willing but body is weak" deal? Anyways, so here's the scoop...

Those of you who don't know the events of the summer, please go back and read the journal entries starting with May 30-31. That will catch you up. This most recent battle is a direct result of what we went through this summer. First, I am septic with Gram positive, CoAg negative, staph aureus. It's not only growing out of both my lines, but also peripherally. It was discovered just before Christmas when I had to come in for a cold/virus. I didn't want to be sick for Christmas and so was expecting to get a dose of IV antibiotics and a prescription. Well, of course, since when do things work as planned in our BMT/hem/onc world? Can I get a big "NEVER!!" from everyone? Of course I know this happens with everyone in life, but the extent to which it is true for us ends up being comical. Just as SURE as you plan something, you're admitted. Stop planning? Nope, can't let the devil, or the disease keep you away from living. Just gotta learn to struggle through the disappointment and keep trying. And, that's really where I am right now.

I had a little (ok, not so little--I was sobbing uncontrollably and throwing kleenex) temper tantrum on Tuesday in clinic where I was informed that it may be a 14-day stay if we had one more positive culture. On top of that, they still had to give me two NASTY shots (Lupron--menopause shot & neulasta--WBC shot). THEN, they told me we had to start the Imuran. It just SUCKED--all of it. There's no other way to put it. I have been trying TREMENDOUSLY hard to take care of myself and do everything right. For that reason, I'm a little "off" emotionally (throw in steroids and hormones and that makes for a "fun" ride) and am having a hard time staying on an even keel. I need phone calls and visits to help with this. There's only so much TV you can watch to keep you busy/distracted.

Visit Info:

Khalita C Jones
Rm 5208, Duke North
Durham, NC 27710
919-681-5208

**use the room phone # first. if you can't get me there, try the cell. the battery is dying and I'm gonna have to wait for someone to come get my charger so I can charge it**

After the summer, I took a sabbatical from EVERYTHING except for Teaching and trying to take care of myself. I came to Duke when they told me to, I did all my meds as instructed, I did EVERYTHING they asked and STILL I find myself looking at another lengthy admission (if what the docs have indicated pans out). That was a major source of my frustration...in addition to the world's 437 experts on cures (some simple) for SAA and wrong decisions that somehow made this situation my fault. Come again? That was said to me on Thursday before I left work and it came from someone very dear to me after they were faithful to pray with me. But, that statement set me off to the extent that I swore. That's a HUGE deal for me. I can't tell you the last time I've done that and I felt horrible afterwards. But, friends, on our behalf. PLEASE use some discretion with your words. I will comment on this more later. Getting tired.

Of course, God forgives me, but I just hate that I allowed that to even happen. As I was praying about it, God reminded me that since He has called me to minister to people suffering in situations similar to mine, He's taking me through those situations, thereby making the ministry all the more real because it comes from personal experience...you know the verse (and if you don't, you will now!) Grace and peace to you from God our Father and the Lord Jesus Christ. {3} Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, {4} who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. {5} For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows."

I have mentioned before that I was called into full time ministry out of II Corinthians. So, I am now spending time just going through this and other scriptures while the Lord has me here hanging out. This is all part of the plan too. I have a constant reminder of what we face. The funniest part is that when I step back, I think "oh my goodness, they have it soooo hard. I can't imagine how they are dealing with it all"...then I realize, I fit into that category too!! But, it's funny that I don't consider myself a "member" until God reminds me. That's an awesome thing. It shows that while I hate all this crap, I know without a doubt that the Lord will use every bit of suffering for His glory as I faithfully trust Him to show me through my own and the experiences of others to live out the calling He has for my life. What an absolutely AWESOME GOD.

Soooo, here's where we are:

I am admitted & will be for a while. I will have a list of needs and specific prayer requests later today after they finish rounds. In the meantime know I love you and am praying for you. Blessings in Christ.

P.S. People have been asking what they can get for me. So, I'll give you a quick/partial list here:

1 - Crosswords (I have plenty of Sudoku, but left my crosswords at home)

2 - Gameboy advance games (check to make sure I don't have it before you bring it)

3 - Movies--funny or drama (again, check first)

4 - Books/maybe on CD (ask first, depends on how my hands, eyes, etc. are doing as to how well I can read a regular book)

5 - Small/travel games (i.e. mastermind)

Friday, January 12, 2007 4:10 AM EST

Indeed, you read the time correctly. It is 4:10am. I am up right now having a steroid snack. I didn't eat much last night because I ended up needing 8mg of Zofran AND 25 of Phenergan to get rid of the nausea before dinner & though it helped, by that time, the need to sleep prevailed so I had to do meds and get in bed...by 9:00pm (WAY EARLY for me) . Nausea from what? HAHAHAHA!! I'll give you a hint. When I went to pick up...oh wait, I didn't even tell you what we changed...LOL! Ok, let me back up. We had to start me on yet ANOTHER drug on Wednesday--Imuran. Details on that later. But, when I talked to the Pharmacist about it (though I never really get counseling, I've never taken Imuran before and my drug count is approaching 30. So, I wanted to ask)he looked and started to speak several times, then realized there's absolutely no way we'd be able to tell anything regarding side effects. Unless side effects are blatant--and you guys ALL know this because you go through it with me--there's NO TELLING why something just randomly pops up. It could be ANYTHING. So, basically, I just need to watch for feeling "different". That's a little difficult also because it was my "major" IV med day and I ALWAYS get sick from that--just to varying degrees. IVIG just does NOT like me much.

So, to make a long story short, I'm now on the Imuran, it made me extremely nauseous, I couldn't eat much dinner. I'm also on steroids so after I got to sleep with little/no food, it was almost inevitable that I would wake up at 3:30am STARVING. And, I did. Sooo...I stumbled into the kitchen for a steroid snack--1 piece of toast with butter and grape jelly, and 1 piece with melted cheddar cheese on top. This is what I was CRAVING! So funny. Anyways, Let me tell you details that will suffice as a "prayer list" for now. I thought I might wait until I was all settled in my room on the Unit, but since I'm up for a snack, this will work better. I have to get all the "formalities" done and it may be a long time. I want people to have prayer requests because I'm going to need major covering this time around. We are teetering on a "Summer Session". Read the history starting with June if you weren't following along. But, basically, I crashed and almost died. And, I'm not ready to go yet! Actually, let me rephrase. I am MORE than ready to go. I am NOT, however, interested in hurrying it along. When God is ready, I'm gone--GLADLY. The suffering and stress in between are just temporary trials. I'm going to speak of those trials in the next few entries because it's directly related to this admission. And that's the last thing for now. Sorry I don't have time for lots of details, but you'll get a FULL update as soon as I'm settled on the Unit.

I am being admitted for sepsis. For a few reasons, it's really dangerous to pull the line. It goes without saying that it's also dangerous to leave in in with an infection. The antibiotics we have been using have kept it somewhat at bay, but I'm really starting to feel it now. (Or is it the IVIG?) Who knows. But, the more I think about how I feel, the more I realize I really need to be on the Unit. We are being given a 14-day minimum stay. I'll send out a list of specific prayer requests in my next update. As far as tangible things, I'm going to make an online wishlist shortly. That way you guys will be able to get something I need/can use. If you want to give something else, please just ask beforehand. People who are not sick have a difficult time realizing that much of the time you're too sick to be able to do even the simplest things. FK tremors, headaches, etc. TV/movies win, but we love audio books, CDs & VHS/DVD movies. MOST OF ALL, we love calls and visits. It gets SOOOOOOOOOO bored and lonely. I won't be able to do this without my friends & family. I'm a VIP patient. So, the visiting hours are "whenever the heck you want to come by" :) Call first though. I'll have my cell and you can call my room. Even if I don't update, I'll post it tomorrow.

I love you guys and wanted to just let you know what's what. Like I said, you'll get another update in a day or so once I get settled on the unit. Sign in to let me know you were here. It's gonna be another long haul and I need as much support as possible to keep my sanity & spirits up.

Tuesday, January 9, 2007 7:50 AM EST

I know, I know, I know...TOO LONG since I last updated this thing. Sorry. And, the only excuse I have is that I really just didn't feel like it. I have been struggling a lot lately with just how to "word" things in various situations. You know, that "illness filter" where you are surely going to scare someone to death, confuse someone else and just generally inform yet another person all with the SAME STATEMENT. In addition to that, I'm just TIRED. But, I am here now and you'll get a long one to get you kinda caught up with the most important stuff...at least important in the way that my heart sees it right now :)

First, I guess I should say...

HAPPY NEW YEAR...2007, WOW! Every time a New Year comes around, I think of a few things...

1 - How long it's been since "so-and-so" died.

2 - How long it's been since I was given "6 months".

3 - How long it's been since I gave my life to Christ.

All three of these things kind of converged yesterday as I remembered my great-grandmother. It marked 20 years since she left here. I have written all about her in the history (which I am trying to get the CB folks to fix because there's a formatting problem with the old stuff) Hopefully, it will be "readable" again here shortly. But, in brief, she was like my "2nd mom" as she retired for the sole purpose of taking care of me when my mommy went back to work and school. And, as I read her bible with her every day in that first year, I was led, by her, to give my life to the Lord understanding that HE was the only one who could answer all those questions I had about what was going on with me. It was very comforting and has been an amazing journey to reflect on. It was 1980. I had just been diagnosed, there was no familial marrow match to be found and nothing else to try except transfusion support and prophylactic infection treatment. As a result, I had to be isolated, and we needed both parents working in order to pay bills. So, I never had a babysitter outside family. It was either my brother, my great-grandma or another family member. As I reflect now, I realize that our family is probably somewhat of an anomaly in that way. My cousins (who also live here) never had an "outside" babysitter either. My grandmother kept them during the day/after school when my aunt went back to work and school. (My aunt and mom are both educators with Master's Degrees--that they were working on at about the same time when we were growing up. My mom recently returned to get her doctorate a few years ago. "Dr. Jones" has a nice ring to it doesn't it?--I'm SO proud of my mommy!) Tangent. Sorry. Back to the update...

Today is an all day hospital adventure. My lines have been infected for several weeks. I REALLY do not want to have them pulled. They have given me a couple of IV doses of Linezolid which is the drug I was on before ATG Hell this Summer, and then switched me over to oral form--which is supposed to be almost as effective, (unlike many other antibiotics where the IV is more powerful than the oral) but the cultures are still coming back positive. We did peripherals last week to try and see if it's just line related or if it's elsewhere. We may need to do a full course of IV just to clear the lines. We'll (hopefully) be able to figure that out today. I DO NOT want to be admitted. But, I DEFINITELY prefer an admission if it means saving my lines. We will see. Much of this difficulty clearing the infection is due to the fact that I underwent MAJOR immunosuppressive therapy this summer and am still on it. ATG lasts a long time in the body which is why it can take up to a year to see the full effects in some cases. I'm also on FK, steroids & IVIG. Every time we try to wean something, my counts bottom out, so we're stuck at these doses with no real alternative but to throw "big guns" at any infections. So, that's where we are. Did I mention that while I'm thankful that these life-saving drugs are available, I really do NOT have much of an affinity toward the likes of ANY of these immunosuppressants. True to form, I am on meds for side effects of side effects. BUT, evidenced by the fact that you are reading this, I am still here. And, I am still enjoying my life. So, I am thankful, even if a bit overwhelmed at the moment, simply because God has afforded me another day to bless and be blessed. And, no matter how difficult this journey gets, I can never deny that the blessings ABOUND. I have one testimony story I will share with you and then I really need to get on the road...

I was late for church on Sunday. (no that's NOT the testimony!) Last weekend we had a little "mishap" with the drug store and it was a stressful afternoon trying to get it fixed. Dr. K had to call the pharmacy and we STILL couldn't get it resolved with them, so we had to go to Plan B. Anyways, I was back in the same pharmacy this past Sunday and I went before church in case there was a similar issue so that I wouldn't have to spend the entire afternoon trying to resolve the problem. I had slept, unintentionally, until 10:30 and so I didn't have time to get all that done and get to church by 11am. So, anyways, I went to the pharmacy to make sure things were taken care of, got to church in time for the last part of the sermon and communion, answered all the "3rd degree" questions about why I was so late from grandma, mom, my aunt, etc. and then headed BACK to the pharmacy to try and get home for Sunday dinner at a decent hour. So, I was walking around waiting...and randomly bursting into tears. Why? I have NO clue, but it was really very strange. It happened once and I ignored it. But, then it happened AGAIN. So, as I often do, I text messaged a bunch of my buddies and just asked them to pray. Well, as also often happens, I felt prayers almost immediately. Yes, God really does work like this. You should try it, if you haven't. Feeling prayers when you need them is an AMAZING feeling. "Ask and it shall be given", ring a bell? God really isn't so complicated in most matters. We just need to DO what He says. So, anyways, after asking my friends to pray and praising God for feeling better, I heard my name and went to the back to pick up my meds.

I was hoping that "my favorite pharmacist" was going to be working so that I could try to resolve the issue from last week, but he wasn't there when I got there so I was prepared to leave him a message to call me. I needed to get a refund for last week's mistake. But, he showed up just as I was picking up my meds. So, I went to pay and then I was going to talk to him about it. As I often do, I joked with the sales clerk and said "are they free?" chuckling. I go in there ALL the time and obviously spend LOTS of money on meds, so it's just one of those little things I ask to lighten the load sometimes. She looked and said "uh..n--YES! they are!" I thought she was kidding! But NO! I asked again...and again she said YES, I'm serious, they're free! Now, I thought, "ok, maybe Dr. K already called and got the refund arranged from the mistake and I have a credit". But, NOPE. So, I asked how/why in the world they were free and she says, "oh, teachers get generics free from January - March". Are you FREAKING KIDDING ME? ALL generics? Like ALL of them? ALL of them? YEP! ALLLLL!! Now, I'm on a few drugs that have no generic or that I can't have the generic for, but the vast majority of them DO have generics. I was BESIDE MYSELF with joy. I wrote down EVERY SINGLE drug...now mind you, I'm really on about 30 meds. Some are IV that I don't get from the pharmacy and a few are OTC and PRN meds, but I do have about 20 daily meds. I wrote them ALL down, gave the list directly to my pharmacist friend (I hesitate to call him a friend cuz he's a Carolina grad :) but I must admit, he is very helpful and I like to joke with him when I go in). He GLADLY took the list and told me he'd get to work on it. Then we discussed the mistake that was made and he gladly refunded my money from last week's mistake. All I can say is WOW.

So, that's my testimony. And that's not the only one. God has been doing things right and left to let me know that He is here and is listening through this difficult time. I was in MUCH worse shape this summer. But, I was also not working this summer. I am working now. And, I am trying to balance everything. Not so easy. But, is life ever easy? NO. Life is not easy but God is good. ALL the time. Even and ESPECIALLY through the difficult times. I got another little "pick me up" yesterday when, after a faculty meeting, one of the teachers I don't know very well but knows a little about my health situation came up to me and said "the Lord really put you on my heart yesterday (meaning Sunday) and I prayed for you. I wanted you to know." I smiled and told her about the fact that I had been having a hard day and we smiled at each other over God's amazing ways then sat in the media center and 3 of us held hands and briefly prayed before we went our separate ways for the day. God is so good. So, so, so, so good--and FAITHFUL. I gotta get to DUKE. I will try to update as soon as I have some news that's semi-permanent so that we can "get praying" on those things. Thank you for taking you time to stop by, check on me, read my rambling words and pray for me in Jesus name. I appreciate it more than I can ever tell you with words. And, I want you to know that you guys are always in my thoughts and prayers too. I will try to do a better job of keeping you updated. Know that you are loved. Blessings until the Lord brings us together again...

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