History

Thursday, June 24, 2010 9:59 PM CDT

Hey Everyone! Tonight I am celebrating! I went to Chapel Hill today for my 3 month check up and got a great report. I am officially two years post diagnosis! That is so wonderful...I don't have to go back for 3 more months. They said I was the most boring patient they had seen all day! I'll take that...

So, how is everything else? I haven't posted since school started, I think. I never did quite get back in my groove after the summer. I like island time...school really doesn't fit into my schedule....but, we try. Its been a busy year. Wilson is back into riding. She is amazing on a horse. I love to watch her...it takes my breath. She has a show this weekend. She has been doing really good. She is now medicine free and tackling her demons all on her own. I learn from her most everyday. Anna Gaites is growing up...She's always been such a girl...I have been so surprised to see her become interested in sports...basketball, softball and volleyball. She's learning...and I enjoy watching her play. All of that has kept us busy.

On top of that, I am back in school. I only have a few classes left and I'll finally have that degree I started many years ago...before children.

My biggest accomplishment this year has been bible study. I have been invited by several people over the years and never thought I had time to commit to something like that...but I decided to give it a try. WOW! I have learned so much...it has completely changed my way of thinking and believing. I am constantly amazed at God's grace. BSF has given me an understanding of purpose and life and love....I highly recommend it to anyone who hasn't experienced it. It is definitely life changing.

I really don't have much else to report. Life is good right now. Me Fine is busy...Second Hope Shop is very busy....and I'm trying to keep up with my girls...Folden is doing well...and I think we're all tackling life one day at a time. I'm a little overwhelmed with all my responsibilities but I can't imagine giving up anything. I do plan to slow down a bit so I can enjoy every aspect of my life. I tend to worry too much when things are slow or boring...so I fill my day with way too much stuff just to distract myself....I'm trying to learn to find balance and most importantly, attempting to lighten up on myself. I think we are all our own worst critics. I know I am.

I pray you all enjoy your summer...your life, your kids and family. And thank you for continuing to check on me. Today, I can honestly say, I'm ok.

Thursday, April 15, 2010 8:15 PM CDT

I've gotten a lot of comments because I haven't updated in quite a while....Sorry for that.

I just went for my 3 month checkup...all is well right now. I am NORMAL! I am living my life and doing all I can to stay healthy.

The girls are doing great....

Me Fine is still doing great....lots of potential in 2010. I will try to update more soon....right now, I'm just enjoying the spring weather!!!

Saturday, August 29, 2009 10:05 AM CDT

Well, summer break is almost over for us. I am sad in a huge way, but at the same time, looking forward to my normal routine. The girls and I have spent most of the last couple of months at Goose Creek…tubing, hanging out at the pool, shopping and grilling cheeseburgers on Coastguard Island. My intentions in the beginning were to spend half the week at the beach and the other half following some sort of my familiar routine….gym, work, cooking dinner, cleaning, yard work, etc…..(I love having a set schedule to follow)….But by the end of week two, it was pointless to continue trying. My nieces were all at Goose Creek and Wilson and Anna Gaites really wanted to stay….so, unlike last summer, I had the freedom to decide. I really did have everything all packed up to come home but a little bit of pleading won out….we stayed. I guess the biggest high for me was knowing that the decision was mine to make….I didn’t have to consider doctors’ appointments, chemo schedules, feeling sick or the safety of being near home in case something happened. I just simply decided. Wow, I’ve come a long way since last year this time. Don’t think the moment slipped by me without an AMEN and THANK YOU GOD FOR THIS DAY….for the blessing of simply being able to choose. I never really thought I’d actually get to see another summer from this direction….and then to be able to decide where to spend it was priceless. It was an awesome summer. One thing I did stick to was a personal promise to make it a happy time for Wilson and Anna Gaites. It was all about them. We stayed up as late as possible, slept as late as we wanted, ate where we wanted, when we wanted, made the rules up as we went. We took off on short notice to Busch Gardens with my cousin and her family, took a solo boat ride, (me driving without Captain Folden!!) and watched about every movie possible. We learned to cook quesadillas, planted some flowers, attended several Me Fine events and danced in a few stores during our school shopping trip…..(I have since learned that mom doing running man in the middle of a teenager’s clothing store is ‘so not cool’….) We’ve driven hundreds of miles listening to old Michael Jackson songs….(who knew my 11 and 12 year olds would appreciate 80’s music???) ….We’ve spent time with good friends, made a few new friends, tried new things, learned some valuable lessons and lived in the moment…..For the most part, I don’t think I spent a lot of time worrying about the future or the past…..The scariness of both did creep in from time to time but I tried to just dismiss it all…. Most of the time, I succeeded in pushing those thoughts out of my head…..the times that I didn’t only reinforced my will to make the most of what I have right now.

I have spent quite a bit of time this summer being retrospective…..taking personal inventory so to speak…....I obviously love analogies….as I tend to use them quite a bit to make sense of what I’m trying to say….I’ve taken a close look at who I am and what I want to accomplish in this life….I often wonder who I would be if my life had not taken me down so many bumpy roads….over so many cliffs….through so many valleys. I wouldn’t trade my life for anything….of that I am sure. Because of the bumps, cliffs and valleys, I have met so many amazing people…experienced so many miracles…..and seen first hand, the power of the human spirit. I have also seen a lot of bad stuff…..things that make me wonder why….???? Folden and I were talking about things people have to endure….from the loss of a child, to the loss of a job or any other event that causes us worry or pain or hurt……I was thinking about how each of us handles it differently….Like losing my son, for example….there are people all over the world who have experienced the same devastating loss….Some families come unglued, some distance themselves and rid their lives of any reminders…..some consol other parents, most carry on as best they can…. None are unaffected…none can resume the life they had before….how we handle it, I think, is based a lot on our personal makeup….My analogy: Think of a good, used Honda Accord….low mileage, decent radio, like new…..a sensible car….pretty reliable for getting from point A to point B….serviced as recommended by the manufacturer and it gets above average mpg on the highway. What a great car for getting to work, dropping off the kids at school or hitting the mall with friends on Saturday….But what if a huge storm hits unexpectedly and its forced off the road…into deep mud…..gale force winds and golf ball size hail?? Everything on the car works perfectly but nothing about it is made for these kinds of conditions….What if the only chance of survival is to get to a certain point, safely out of the eye of the storm…..I would have to use what I have available to make it….I would have to push it to its mechanical limits to get to safety…..it would have to endure more than it was designed to withstand….If it even made it through the whole ordeal, it would definitely have scratches, dents, a broken headlight, and mud on the tires…..After it was all over, assuming it even made it to the other side….it could be cleaned up, maybe polished, tuned up and serviced…but there would always be signs of damage…..things that could not be fixed….probably there would always be trouble linking back to its off road experience…maybe intermittent trouble with the motor or transmission, maybe deep divots in the body that couldn’t be smoothed out, a crack here, a leak there….most likely, never the same…….granted, a 4X4, heavy duty, off-road Ford would have had less trouble……still dinged up a bit, but not nearly as banged up as the Accord, not nearly as effected. If the Accord had only experienced what it was designed for, it probably would have always ran well, aged slowly and been a good vehicle for a long time….Sometimes, life takes you off road and you have to do whatever it takes to get over the bumps, around the cliffs and through the valleys. The real damage is not usually even a consideration until the trek is over….We do what we can to repair the damage….but not everything can be fixed….some dents become a part of our new look….some of the leaks are slow and unnoticeable until way later…..some of the malfunctions don’t surface until even more miles are accumulated….the vehicle is never as reliable as it once was.

So how am I? I’m still doing really well. I only have to see the UNC doctors every three months. It is fairly uneventful. (Thank GOD…yet again!) I’ve had the port removed so I have to hit the 1st floor first for an IV…..Then, I see the doctor or her PA for a check up…..After that, I head up to the third floor to fuss at the pretty red haired girl about the long wait for infusion. They put me in a recliner to wait for my blood work and then they hook me up and infuse for 15 minutes with Zometa, the bone strengthening drug that has been shown in studies to reduce bone mets in breast cancer patients. Afterwards, I say good-bye and I’m headed home. I CAN NOT complain. My last appointment was in July. My blood counts were excellent….even better than pre-cancer. I do most of what I’m supposed to do…..exercise, eat right….(okay, more so September to June than June to September)…..I don’t take any meds….everything else is pretty normal…..I LOVE normal….I still understand that triple negative breast cancer is extremely dangerous…..I remain vigilant, very self aware. Any new ‘symptom’ gets my attention….I still have stuff I need to work on…..and I realize that the first three years are the most critical. The chance of recurrence is highest during that time period….(only in 3 neg)……I have slipped a few times and looked for updates on the internet….3 neg has gotten so much press in the past few years because of Robin Roberts on GMA and through the triple negative breast cancer foundation founded by celebrities in memory of their friend who succumbed to the disease. Through my experience with leukemia and breast cancer, I know it is not good to hit the internet and stray very far from the handful of sites that offer positive information….I know the scary statistics and negative outcomes are out there….I understand the possibilities….and probabilities…..but I have to stay hopeful and focus on those who made it….There is stuff posted out there that scares the *&^ut of me…Sometimes, in my weakest moments, I get sucked in…..It is never good.

I’ve been following several 3 neg survivors and I find that is the best medicine for me….to see others who are still going strong….I also have been introduced to a couple of new people who are behind me….recently diagnosed and scared beyond belief…..All I can think is buckle up and floor it!!!

Wilson and Anna Gaites are headed to 6th and 7th grade. UNREAL! They both seem a little anxious about starting school on Tuesday. Wilson is doing really well….After several years of therapy, I think she’s really beginning to get a handle on things. I’ve learned so much from her….I’ve watched her overcome some pretty hard stuff……Funny what your mind can make you believe…..She’s had a few episodes in the last 6 months….I know a huge part of these episodes stem from her anxiety issues but a big part is also her age….being 12 is not that easy. It has been incredible watching her figure it all out…..she inspires me everyday to simply put one foot in front of the other….Anna Gaites: Although her hurt manifests itself in a much different way, it is always apparent that her heart still has a huge hole in it…..However, in true Anna Gaites form, she finds room in the rest of it for everyone and everything else. Her temper will probably always get her into trouble and her tendency to argue with a door knob will cause many to give in simply to shut her up….There are days that I can only wonder how I could have gotten being a mom so wrong; there are other days that I can see everything I’ve done right……..I LOVE those girls….I know God has a plan for me….I can only pray it includes watching them grow up.

The rest of the family is doing well…..Ampa and GeeRose are doing better than I’ve seen them in a while…..Folden is doing really well, too. He will ALWAYS be complicated….but I think some of the dark days of the past are slowly fading. My mom is doing great. I see her spending a lot of time with a high school classmate. I miss my daddy to the nth degree but I sure like her friend(?)….. He seems to be a great person, he’s genuinely kind to my kids and me and I can tell he adores my mother. Everyone deserves a chance at being happy, right? Uncle Blake and Aunt Tammy seem to be going well…Tammy’s dad is sick right now….I think he’s gonna be okay though…...Aspyn and Alexa are growing up….Aspyn is 13, tall and beautiful…..Alexa, fortunately, is still a little girl…..However, I can see a hint of teen-dom creeping in…..I do dread seeing her hit 13…..I want all my girls to just stand still….let me enjoy them just a little while longer…….I can never look at Aspyn or Alexa and not hear Foldie calling their names……Appeeeeeee and Yexa. Time goes by way too fast.

Me Fine is hanging in there. I’ve been back at work since January. (Obviously, since the end of June, I’ve worked mostly from my ‘satellite office’, keeping up with things via email and texting)….….everyone has been great about covering it through the summer) Lisa, Aunt Margie, Julia and a crew of very dedicated volunteers work hard to keep the thrift store clean and stocked…..We are so grateful for all of you who donate your items to Second Hope…..Everything you do makes a difference. We’ve built up a pretty strong customer base. I love seeing people getting school clothes from us….that let’s me know we’ve got the right stuff….a lot of time and effort goes into sorting through the donations so that they can all count in one way or another. We still provide tons of merchandise to missionaries and other charities. We’re all really proud of that. Lisa Valentino is still working hard to promote Me Fine. She’s working on a few fundraisers throughout the remainder of the year. Its always fun to see what she’s got going on. Elizabeth Diaz has taken over family assistance…although she wears many other hats, as well. She was featured in the Duke Children’s newsletter for organizing our 4th annual Christmas in July. Kids at Duke and UNC Children’s were visited by ‘Santa’ and given gifts donated by local businesses. Elizabeth is new to Me Fine but already has shown a wealth of passion for the cause. She’s getting ready to start working on our most difficult event of the year….Christmas in December. Last year, Me Fine and a TON of volunteers sponsored nearly 60 families during the holidays…..It is so cool to be involved, especially during Christmas. We’re also working with a new board of directors on ensuring growth for the future. Me Fine will hit its 5 year mark on September 1st…..Its been a rocky ride….lots of ups and downs, lots of trial and error…….I have learned so much during these past 5 years….and I know that we’ve come to a point that what I can offer is not enough. In order for Me Fine to grow and keep up with the needs, there has to be people involved who understand trends, forecasting and structuring an entity for the long term. Me Fine grew from hope…..it prospered into a business and now it is time for it to be managed by not only me, but also others who can make it better and stronger. It has been difficult for me to let go a little….but also quite rewarding to know that the spirit from which it was founded has taken it to this place…..bittersweet, I guess. I will always be right in the middle of it, as long as my motor holds out…..but now, there will also be a whole fleet along side me…..I think that is pretty remarkable. I think the most important thing about working with a new board is that Me Fine will have a more defined path to follow. I will have the security of knowing that we are going in the right direction based on the experience and knowledge of more seasoned managers. Now, its kinda all on me….and if something doesn’t go just right, I take it very personally. I have a tendency to beat myself up if everything isn’t just perfect. As big as it has gotten, you can imagine that I get my feelings hurt quite often. With so many minds working together to make Me Fine the best it can be, I can only hope that I can learn to step back and not be so affected with even the most minor glitch.

I guess that’s about enough rambling for one night. This happens to be my last night before school starts to stay up as late as I want…..I figured it was a good time to purge all my thoughts from the summer and to catch up on what is going on in my world. I definitely have a cracked windshield, a missing hubcap and I’m spark knocking…..My right front tire needs some air, the hood blew off about a mile back and I swear I think I just lost a bumper……I have no idea what’s around the next turn but by the grace of God, I’m still in drive and moving forward. -L

Sunday, April 26, 2009 10:11 AM CDT

Hello....Nothing really new going on...just a few short updates....

As you know, I finished chemo on December 3rd...Since then, I have been getting monthly infusions of Zometa, a bone strengthening drug that has proven to greatly reduce the occurrance of bone metastisis. I finished #6 this week....now, I only have to go back every three months. Wow! I am doing really well....From time to time, I can tell I am not 100% but, at this point, 75% is good enough for me!!! My hair has finally covered my entire head...Its light and curly....always wondered what my 'real' hair color was...I just got my first trim this week....such a milestone! I am enjoying this beautiful weather...really sick of the cold and rainy days of the past few weeks. I'm looking forward to summer! Otherwise, things are clicking along fairly well...absolutely no complaints. If you're a facebook-er, please look me up. Its been fun reconnecting with friends from our time at UNC and Duke....Love you all....-L

Sunday, March 8, 2009 9:53 PM CDT

Gosh, can’t believe its been 2 months since my last update….seems like just a few days…..Where does all the time go? So, how am I? I’m doing great, thanks. My hair is growing; I no longer wear a hat, scarf, cover, etc.!!!! THANK GOD! I hated being bald. My eyelashes and eyebrows are in fully and other than having REALLY short hair, I don’t even look sick….My hair is very light....but so far, no curls….Its as thick as carpet; we’ll have to see what the final result is….I’m going to let it grow to my feet…..I am THRILLED about the time change….and the warmer weather….I absolutely hate cold weather and early nights…..I find it quite depressing!

In my last entry, I talked about standing still, afraid to pick a direction…..I think God has a tremendous sense of humor and forces me to find direction in the smallest divine clues. Its kind of like a constant Easter egg hunt. Anna Gaites played basketball again this year. She is awesome, by the way. She has never been the athletic type…more dancer/princess/diva! Last year, she really did a good job. This year, the teams were set up a little differently and I worried she might not be able to keep up….But, in usual Anna Gaites form, she gave it her all and she hung in there. The first few games, she stood back and didn’t really get into it. If the ball was passed to her, she immediately passed it to someone else. It was almost as if she was avoiding the ball, the goal, the other players, etc. She wasn’t even playing to the level she had gotten to last year. At first, I just thought she was relearning the rules but she continued to stay back…..I finally asked her what was going on…..She said, “Mama, there are a whole lot of people watching me. I don’t want to mess up.” Ah, hah! She figured if she did nothing, she couldn’t possibly do anything wrong……Well, how much fun is that? And isn’t it better to do something rather than nothing….if we do nothing, then the chances of us accomplishing something or making a difference are greatly reduced, right? I had to throw a little grin toward the clouds….I hear ya Lord….! So, after that game, I took my butt back to work. For so many months, everyone else has been taking up my slack…and I must say, they’ve done a very good job. I don’t think I was missed at all…..But, we all have our assets……mine are needed just as much, I guess. I helped a little during the Christmas project but since January, I’ve been back at Me Fine full throttle, doing whatever I can to make it work. With the unstable economy, our donations are down a little. We’re having to organize more fundraisers….and we are relying on the store to pay our administrative costs…..You have to see our new website, www.secondhopeshop.com ….We’ve started taking consignment on furniture, housewares, formal wear and a few other things…We’ve added a few vendors, inside and out….and included new merchandise, (we have a TON of purses: Zebra, Giraffe, Preppy….even new furniture pieces: console tables, shelves, sofa tables, plant stands)…..Its actually been fun trying to find cute stuff to offer at the store…....(Great way to spend my time when its dark and cold outside!) This week, you may see me outside raking pine straw or planting flowers….believe it or not, I’m thankful that I’m able and that weather permits! I feel a renewed sense of something. I had gotten so worn out with Me Fine….it feels like a constant struggle to keep it afloat. So many families, so many needs…..as each year passes, the more calls we get in a day…..I guess 2008 was already kicking my butt and I just got burned out……Taking a few months off was probably the best thing for me….I’ve been doing this for almost 5 years…..and it doesn’t get easier…..I think I felt that someone else could have done it better, made it stronger, organized it better…..but somehow, I ended up with the seat….I guess I can’t be concerned with what someone else might have done…..just gotta keep doing what I know and hope that it all works out how I want it to. We have some great people on our team….the incredible staff, our board of advisors, a new CPA and now, a new board of directors…..I’ve sifted through every facet of Me Fine….revising our weak spots and making the most of our strengths……Me Fine is a pretty cool entity….but its more complicated than it was just a few years ago…..and our simple little procedures are no longer enough to maintain it all…..I still love it like its one of my children….and its just about as hard to raise!

Speaking of children, mine are doing well. Anna Gaites is just beginning to cross over from little girl to preteen. I never thought it would happen. She has always been caught up in fairy tale world; I was just hoping she would stay there and never be interested in talking on the phone or BOYS! Yuck! She’s having a good year in school….the drama is starting but still tame, for now. She does have a tendency to roll her eyes at me from time to time, but she is still wise enough to be careful not to get caught! Wilson is doing very well, now. 2008 was tough for her, too. I think she feeds off my moods and my state of mind. She’s always been very intuitive. She’s come a long way from the sad, troubled little girl that she was last year…..She’s worked hard to overcome her anxieties, her obsessions and her aversions. I think she’s a strong kid to have endured it all and still come out okay. We still have episodes from time to time….I often wonder if she would be better off with a fresh start….new school or whatever….but she wants to overcome her issues herself….and hopefully repair any damage she’s caused. I don’t know many adults who would choose that route…..

She and I went to see a psychic this weekend. Anna Gaites had a friend over and Folden was in bed with some kinda funk….probably the flu…..We were all at the beach…Wilson invited a friend but it didn’t work out so she and I ended up being BFFs. We were out shopping and a weird series of events put us in a shop at Emerald Isle with a psychic. I’m definitely a skeptic but Wilson talked me into a reading…..It was fun; none of it seemed real to me. Wilson was mesmerized because she immediately ‘picked up’ on her unusual relationship with animals. She talked a lot about Wilson and Anna Gaites’ nature…all fairly true. She then talked about the baby, as if he was there. She said he picked at my cat, moved a particular picture, moved Folden’s shoes, played ball in Wilson’s room, twirled her hair at night, jumped on her bed and pulled Anna Gaites’ ear buds….all to let us know he was around. She said he told her to tell us he was okay and that he appreciated us taking care of him in this world….he spent most of his time with a grandmother on my side and a white dog….She said there are spirits all around us and she was sure I had seen them….and she was SURE I had seen the glitter. Hmmmm, that got my attention. Other than that one statement, I think it was all in fun. (She even said Wilson and I had spent many previous lives together, usually as sisters…Anna Gaites had been in other lives with us, but usually as an Aunt or a niece…..) Who knows?

Well, that’s about enough rambling for tonight. I guess the short version would be that I’m doing well….I’m getting back into my routine a little at a time….still unsure of what I’m doing…but doing something, nonetheless…..I still hear the time bomb ticking, some days its louder than others…..I’m looking forward to blue skies and warm weather…but still thankful for this day…whatever the temperature. I appreciate all of you continuing to check on me and my family…..I appreciate all of you who have supported Me Fine…..and I really appreciate your prayers! I know I would have never gotten through this without them…..Enjoy your day! -L

Monday, January 5, 2009 7:46 AM CST

Another brief update……I finished chemo on December 3rd!!!!! YAY! I only have to go back once a month because I am participating in a trial studying the effects of osteoporosis drugs in preventing bone metastasis after breast cancer. I get a 15 minute infusion of Zometa every 4 weeks for 6 months, then quarterly for another 2 ½ years….I did not have the port removed because the infusions are easier without having to start an IV…….I am beginning to see signs of hair! I now have about 3 eyelashes but my eyebrows are still nonexistent. I feel pretty good….I guess that’s good enough for me!

Christmas was fun. I enjoyed every minute. We left for the beach on the day after Christmas, but I had to come back early because of my monthly appointment. The girls and I decided to spend New Years at home rather than going back to Goose Creek. Folden ended up fishing with his friends. The girls and I spent the whole week doing ‘girl’ things…..

I guess the new year has prompted a new direction for me. I just can’t figure out in which direction to go. I feel like breast cancer and the emotional fall out of 2008 has somewhat broken my spirit. I think I’m just standing still waiting for something to happen, actually afraid to make any kind of sudden move. The emotional stresses caused by all this have been nearly intolerable and in some ways changed who I am….and mostly how I see myself. I have been introduced to the worst version of myself and I can’t quite figure what to do next. Its funny how you go through life seeing things one way and then something like this comes along and everything looks so different. Hopefully, the fresh start of a new year will bring the answers I’m looking for and the direction that is right for me. In the meantime, I’m trying to focus on right now….trying to stabilize my footing and looking for the silver lining in everything. I don’t want to waste a lot of time on what could have been, should have been, etc, etc, etc,….and I certainly don’t want to make a whole bunch of new mistakes.....I’m praying that I’ll find some sort of renewed peace and strength in 2009 and definitely no evidence of cancer. That would make a GREAT year! -L

Wednesday, November 19, 2008 6:33 PM CST

Short brag report! 7 treatments down! ONE TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! -L

Wednesday, November 5, 2008 10:48 PM CST

Another quick update……Today, 11/5, I received cycle #6 out of 8…only 2 more to go!! It has been tough, but doable. Remember the first four were cytoxan and adriamycin….(not sure of the spelling)….anyway, those made me feel sick for about 4 days after infusion. The new stuff, taxol, is a little milder and doesn’t cause nausea, (so far)…..Taxol is associated with joint and bone pain, neither of which I have experienced. I do find myself growing more and more tired but fortunately, that only comes in waves and I am still able to do most of my daily routine……….The doctor says each cycle could increase the potential for side effects….I may regret saying this, but I think I’d much rather endure pain than nausea. I am so relieved that the nausea stuff is basically over. That is a blessing in itself. I really didn’t even have to do the first cycle because of my stage one status but I opted to go with the more intense regimen for the better odds…..and I made it through that part. Good for me!!!! Anna Kate, one of the UNC doctors, checked me over today. She asked a bunch of questions and said I’m really doing well…..She actually seemed impressed that I had not fallen to pieces yet. We went over my physical status and how I felt…..both, no complaints, considering I just completed week 10 of deadly poison in my body……I did mention my mental/mood issues….Although I’m physically strong, (I don’t even have to take the Neulasta shot anymore that helps build my blood counts……my body is doing it all on its own….That is GREAT! I hate shots.) But mentally, I’ve seen some bad days. Dealing with cancer, whether its with someone you love or within yourself, is difficult to say the least….and the effects show more through your attitude. Some days, I cry uncontrollably about this or that….other days, I feel empowered that I’ve made it this far. I think these kinds of situations really spotlight your inner strength. For so long after Folden was diagnosed, I felt strong and capable….I had faced the worst thing a parent could possibly encounter and I had found the inner strength to carry on……But since my own diagnosis, I think all my weaknesses have surfaced. I can see each failure, each shortcoming, each flaw, each limitation…. I guess I thought I was strong enough to do this without skipping a beat…..but it hasn’t been that easy……Everything seems unfamiliar to me…..my surroundings, myself…..everything……I’m having a hard time keeping my chin up. Anna Kate made me feel a little better. She said everyone goes through it…..its a combination of having a life threatening illness plus being pumped with a bucketful of mood altering drugs…..I would have to remember to tell myself that the self defeating thoughts are not real and that I am doing great in comparison to many others in my situation. I guess I will have to go with that……I guess its just easier to go through life not being tested…then the weaknesses never surface…..but just as sure as you’re put in a tight spot, those weaknesses become clear and you have to face them…..Maybe I would be better off not knowing what my limitations are…..but for some reason, God chose to put me here….maybe to face those shortcomings…..and to ultimately strengthen me for the next test……..What doesn’t kill us makes us stronger, right?

On the home front, things are going well….probably better now than it has been over the last couple of years. The girls are doing well, they are champs….They are facing this thing with grace, courage and optimism. I am so proud of their strength. We all still have a lot to overcome but I can see us all finally headed in the right direction…..which is yet another blessing.

Friday is my birthday….I’ll be 42. I would chicken out and try to remain at 39 but I think with all I’ve dealt with over the past few years, each birthday is a blessing and I want it to count….so 42 it is! Folden and I plan to spend the weekend at the beach….a little R and R and CHRISTMAS SHOPPING…….

I guess I’d better check out for now…..I don’t sleep well on infusion night….I’m so hyped up on steroids, I can’t get settled……so the washer is going and my fingers are dancing around on this keyboard…..I try to find anything to keep my mind busy so the demons don’t creep in and tell me stuff I don’t want to hear…….I think I’m going to stick with ‘Life is what you make it, you can let it kick your butt or you can fight back’………….breathe in, breathe out…one foot in front of the other……..Hopefully, God will continue to guide me through this and from the other side I can scream and shout…WE MADE IT!

I will have to say thank you to everyone who has left a guestbook entry….many of you have called, sent notes….stopped by……..All of that really does fuel my soul and keeps me going…..Your kindnesses will not be forgotten……

Oh, one more thing….(so much for brief, huh???) Me Fine is in the middle of our Christmas campaign….Last year, we provided holiday gifts for 37 families……This year, the list has grown to 75 and counting…..I realize the economy sucks and most of us are wondering how to provide for our own households……If you have a group from work, church or your neighborhood who would be willing to adopt a family for our holiday project……please contact us……I need to place about 35 more! It may seem like a lot but the feeling you get from doing it is unexplainable…….Please give it some thought and let me know……I refuse to deny any of these families the opportunity to celebrate Christmas or Hanukah this year…..I know how much my Christmases with Folden, Wilson and Anna Gaites have meant to me…..priceless…….and now to see how much joy our efforts can bring another family in the middle of a crisis, well that helps sustain me……. I hope some of you will join us in making this all happen……..We are even recruiting wrappers, shoppers, delivery people and sponsors…..We have an empty rental space in Clayton that we’re using as our Hope Headquarters……We really need your help!!!!!!!!!!!!!!!!! All my love, -L

Sunday, October 12, 2008 7:42 AM CDT

Half way finished and still hanging in there! I'll update soon, promise!

Friday, September 26, 2008 11:35 AM CDT

It’s me again…still here. I have finished 3 of 8 chemo sessions. Not as bad as I expected, I guess. After the last round, I shaved my head….or rather Anna Gaites cut my hair and Wilson buzzed it……They thought it was kinda cool…..How many kids get to shave their moms’ heads? I bought a wig, but just can’t make myself wear it….I don’t know if its claustrophobia or what….Just doesn’t feel right….So, I’ve opted for hats……Wilson bought me a cool ‘PEACE’ hat….my new motto for life…..I also have a few others with inspirational stuff written across the top…..I have a ‘dressy’ hat and even a ‘Life is Good’ hat that I wear just to mess with the cancer monster…..……I’ve stuck with the gym….working at maintaining a healthier diet…..stayed out of trouble and basically just spending my time living each day as best I can……I get chemo every other Wednesday….The three to four days afterwards are not so fun…..I’m a little more tired and I have to take medicine to keep from being nauseated. Once in a while I get extremely moody….I don’t know if that’s the steroids I have to take on chemo days or if it’s the overwhelming situation I’m in……Could be both…….Last round, I pretty much cried for a week….this time, I seem to be in a better place…..so, I would suspect its all state of mind……Whatever it is, I’m trying my best to keep my head up and my body moving forward.

I can’t really think of a lot to write today. So many thoughts pass through my head in a days time…..I wouldn’t know where to start. I think my karma is out of whack…..It seems that all I’ve known for so long is now different. What once seemed normal is now unfamiliar. It’s all crazy. I’ve always had this simple little life…..not too many obstacles….nothing that I couldn’t handle……and a LOT to be grateful for. I don’t think I ever took that for granted…..Then, after Folden got sick, obviously everything changed. I learned to appreciate life, time and love even more……but somewhere along the way, everything got off balance……Now, I guess I’m just trying to figure out how to manage it all…..I’m really trying hard not to see life as bad or hard….I’m trying VERY hard to find the joy in every day…….but it seems I just keep getting slapped around…..I think somebody somewhere wants me to give up. During chemo this week, one of Folden’s doctors stopped by to say hello. We talked for a while about the kids and their families. I commented that I think some families get hit harder than others….She said if a person lives long enough; they will have to endure a hardship at some point. After she left, the lady in the infusion chair beside me said she agreed with me….some families do get hit harder than others…….The nurse walked in and started talking to us about our treatment and I never got to find out what she meant. I’m sure she was going to tell me about her family’s situation before she was diagnosed. Not that knowing someone else was handed more than their share would make me feel better, but at least I know God is not picking on me……. We all think our stuff is bigger than everyone else’s…..but really it’s probably not….It just seems worse because it is our own and we have to deal with it.

I guess that’s all I have for now. Tonight, Folden, the girls and I are going to a reception hosted by ‘Speaking of Women’s Health’…..Should be nice. Check out the organization on the web……It’s a great resource for women…and I believe it is a national thing. Anna Gaites LOVES to dress up for anything…..it really makes her happy…..so for today, that is my joy. ~L

Monday, September 1, 2008 9:39 PM CDT

I'll try to keep it short and sweet....I just couldn't let a September 1st slip by without something new written here.....

Wow! 4 years...and I miss Folden more today than yesterday.....Each step forward seems to take more effort....Some say it gets easier with time....I'm quite certain those people have never lost a child but are only assuming how it might would be......I think it simply gets different......I have begun to get 'comfortable' with the discomfort of grief.....Odd concept, I know....

How am I? Well, chemo was postponed a week....I was supposed to start August 20th, but my incisions from the mastectomy were not healed enough to proceed....The wizard wanted to wait another week.....In the meantime, I drilled her about why she chose the particular chemo regimen....She said, (and I really LOVE this...when you step back and absorb the whole thing it has such a positive ring to it).....with stage 1, node negative, the 'TC' regimen is all I need....no need for the more aggressive form.....(HAH! I had bilateral mastectomy….What made you think I wanted merely what I need? I want whatever will DESTROY this invasion in my body……..PULVERIZE it!) The wizard gave me the pros and cons of both TC (Taxotere and Cytoxan) and AC-T (Adriamycin, Cytoxan and Taxol)…..TC is less aggressive, 12 weeks, 4 doses…less side effects….ACT is more aggressive, 16 weeks, 8 doses, more side effects, including an increased risk of heart damage and leukemia… She said it didn’t make a lot of difference either way….the positive (and negative) was only a 1 to 2% difference………Sooo, if I have a 86% chance that I will see no evidence of disease within 10 years, and going a little more aggressive will increase my chances to 87 or 88% with only a 1-2% increased risk of heart disease or leukemia…..the choice seems simple…….Let’s beat the *&^% out of this stuff while we have the chance! (It probably sounds like I made that decision instantly but I didn’t…..I checked around with a few people who would know……The couple of people I spoke with who would REALLY know the answer seemed to think more aggressive is better…….(I must give prayer credit for the final answer!)

On August 26th, I went to UNC for a MUGA scan….something about my heart….a baseline for future reference, post chemo.

On August 27th, I had blood drawn and then was examined by the PA….Chemo was administered sometime around 1. I cried when it hit my vein.

Day 1 after chemo, I spent in a state of depression. Lori’s personal pity city!
Day 2 after chemo, I felt sick…even with all the nausea meds….It wasn’t as sick as I expected…probably something I could have worked through….but I was still in my wallow mode…..
Day 3 after chemo, I got up out of my bed and did something productive…..and so it has been since. Tomorrow, I plan to start back at the gym….just like I do every year after school starts! Hah! Cancer can kiss my butt!

I go for round 2 on September 10th….. ….I will lose my hair sometime around then…. Each course is supposed to wear more on my body…We’ll just have to see what happens…..Hopefully, if I take care of myself and avoid sickness, I should be fine……

So there. I’m staying busy and beginning to accept what’s happening. I don’t like it and yes, I’m still scared. Breast cancer is treatable, but very unpredictable……too many variables for me to rest easy……I do plan to make it through this thing alive……. I can already see a huge positive emerging………….I have always lived my life worried about what could be lurking around the next corner….what monster is hiding in the closet……I have also been guilty of wishing time away…..Man, it’ll be great when the girls can hold their own bottle, feed themselves, walk……dress themselves……Won’t it be great when I get this paid for, or finish this project…….I look forward to getting this behind me……Can’t wait until this is over……On and on….always wishing for the next step………..Well, I think now, I am being forced to appreciate what is right now………What is now! I have to enjoy what is happening at this moment…..I can only worry about what needs to be worried about…not what may need to be worried about later………I have already watched so much pass by……The girls are 10 and 11…..I see them getting more and more independent daily……I would give most anything to have to rock them both to sleep just one more time…..or get up in the middle of the night to change a diaper……..I would LOVE to have to still buckle them both in that awkward double stroller that never would fit through the maze of racks at GAP…..or simply be needed to tie their shoes. I have to slow down…..inhale all that exists at this very moment……no worries, no regrets…..no tomorrow, no yesterday…..just now. That is all I have control over, and I guess I need to give it the best I have.

Thanks for the prayers. Thanks for continuing to check in since Folden was diagnosed over 5 years ago….and thank you mostly for continuing to pray for the past 4 years for my family and the families of all the other children who are touched by childhood illness and injury………

One final note……Many of you who are local will have heard about the young couple and their baby who were killed in an accident at a railroad crossing……I hope all of you who visit will stop for a moment and say a prayer for the Brady and Higgins families…..This is certainly a tremendous loss for both families…….I hope you will join me in sending prayers up for some sort of peace and understanding during such an unexplainable loss…….….~L

Tuesday, August 19, 2008 10:14 PM CDT

I can see from the counter that many of you are continuing to check on me….and I appreciate that so much. From your own experiences, I’m sure you understand how much better a situation can be if others are there to hold your hand…even if only virtually.

To continue my rantings……………..I am ocean front today….sitting in a chair on the beach watching my kids and their friends playing in the water. It’s very warm and an easy breeze is keeping it comfortable. Jill is with me…..we’ve been discussing life in general…observations, predictions, how it could be better and how it could be worse. Jill has been a good friend. I like listening to Jill because I know each of her own rantings are based on her belief in the Bible. She helps me find a better understanding of most everything.

So, to catch up: I had double mastectomies and after those *&^% tubes were removed, I have been fine. …not nearly as bad as I expected. I’ve been back to see my plastic surgeon twice….He says I’m gorgeous! I have also been to see my primary breast surgeon….She says I’m great, too….and now I should be ready to move on with chemo. She sent me to Cancer Centers of North Carolina for my oncology regimen. I have heard a lot of good things about the center and the Dr. I saw was highly recommended. I met with her and discussed all options….breast cancer, just like Leukemia, has a protocol for treatment. So, basically, anywhere you go in the United States, the initial treatment will be the same….Usually, you don’t stray from the protocol unless there is an underlying reason. Anyway, the Dr. examined me thoroughly and requested a series of blood tests….The lab is in house, so I just walked over a few doors and they poked me a few times and that was done. From the blood counts after my surgery, they thought something else was wrong…..Could I have a malfunctioning kidney, an ulcer, (imagine that!), or some other kind of illness….Was I anorexic, bulimic, etc…….I swore I did not have an eating disorder…..For goodness sake….have you seen my GUT?????????????? Anyway, I had to pee in a cup and get blood drawn….results later…….(Not only do I look forward to a cure for C-A-N-C-E-R….but a time when instant test results is the norm….not ‘we’ll let you know in a few days’!!!) Okay, sooooooooooooo…..I leave there feeling pretty good about the doctor…..She’s wonderful….focused on my situation…friendly, etc….I LOVE her staff……they act they’ve known me forever………..Chemo is set for August 21st………….I feel I would be doing myself an injustice if I don’t see someone at Duke or UNC…..Those are teaching hospitals……lots of research comes out of those facilities…..and on the advice of an old friend from the ‘leukemia’ community who is now in the medical field, I made an appointment at Duke……August 27th……On the return visit to see my breast surgeon, she goes over all my stuff…..Primary says I’m good….my tests showed nothing negative….probably not an ulcer or whatever else they were looking for……….BUT, she says I don’t need to wait until the 27th for a consultation when I can actually begin treatment on the 21st……..She said nothing would probably happen in the interim but we should try to go ahead an get going……….She called Duke to see if we could move it up, but no luck….I had the first available…..She said to think about it but she really wanted me moving ahead……not only for my health but for my mental peace of mind………I had to cry a little….so many decisions to make, but no one to come down and say, LORI, DO THIS….ITS THE RIGHT THING!...............So, I go home trying to figure out what to do……….Should I go to NC Cancer Centers and see the general oncologist or wait and go to Duke and see a BREAST Oncologist……..????? I decided to go to the beach…………………..Wouldn’t YOU?

While I was at the beach….I decided to do a little research….Everyone was asleep but me…..I was so on the fence about what to do…….I really wanted to see a ‘specialist’, but if something happened later and they told me it should have been caught ‘earlier’, I would never forgive myself……..So, to pass time, I looked up a few things……..Now, I KNOW you should NEVER, NEVER, NEVER surf for information about diseases, conditions or anything where there is potential for negative postings……Most everything I find about triple negative is bad, bad, bad……Since the first week of diagnosis, I have not been back on the web for research….I think I found out enough to last me a while……..But this time, I typed in the words and waited to see what popped up……In all the choices was a link to www.nosurrenderbreastcancer.com ……..I liked how that sounded so I tuned in…….I read for a while and saw that the site had been started by a woman named Gina who had been diagnosed with 3neg about 7 or 8 years ago…….(Yes! She is still alive….) A few years later, she was diagnosed with a second, unrelated and different kind of cancer…..She started the website to give women like me a little hope….Bless her SOUL! There are tons of women who frequent the site…they share their stories, including information, symptoms, effects of treatment, etc…….Its a real life, real time site for those of us who are either just getting started or for those who are in treatment and need support and encouragement…….Its pretty awesome…..Included in the site is a medical researcher called ‘Edge’ who posts breaking news from Breast Cancer world along with updates on treatments and the latest in research……..In one of the forums published by ‘Edge’, he referred to a Dr. Carey who had made several statements on 3neg at a national forum….Beside her name, it read ‘Triple Negative Breast Cancer EXPERT!!!!!!!!’……….Cool huh? I didn’t know they made those…..As I continued to read about the advances in triple negative research, (finally some positive stuff)…..her name popped up again….This time it said, something, something, something, a doctor at the UNC Breast Cancer Center……………..Wait a minute! Dr. Carey, a Triple Negative Breast Cancer EXPERT is a doctor at UNC…..The same UNC that is practically at my back door…Why didn’t I know this before now………….Hmmmmmmmmmm…….Gotta see this doc!!!!!!!!!!!!!!!!!!

Well, Its laaaaate Saturday night…..I wondered how in the world I would get in to see this doctor before the imposed deadline…….If Duke is booked, surely UNC would be too……I hate asking for favors and I really hate using any of my Me Fine contacts for personal gain….We have to ask for so many favors to keep the foundation going that I can’t imagine using any of them for myself…..So, I thought and prayed for the answer. I decided to email someone not really related to Me Fine, just to see if she might could get me in the door…….By Sunday night, there was a response from UNC that I would be seen before the 20th…….Whew! Thanks for that! I spent the rest of the day reading about Dr. Carey…….She is world renowned in her field, quoted in many different publications for her work with 3neg…….I feel like I’ve just gotten in contact with the ELVIS of breast cancer……..

Monday morning, I’m at home and I get an email from my contact with all the information from UNC, including a direct number to make an appointment. I replied, “Calling right now!” I dialed the number and a very friendly voice answered….I said, I’m a friend of blah, blah, blah and I’m hoping to get in to see Dr. Carey as soon as possible…..She said, “The BAZAAREST thing just happened…..After I sent the email, I got a call from a scheduled patient that needed to cancel because she requires more surgery and is not ready for chemo…If you can make her 2:40 appt, its yours!”…….I thought bazaar huh? Maybe divine intervention?

I start scrambling….UNC is about an hour from my house and with traffic, I had to rush…………Off I gooooo to see the triple negative wizard!

I got to UNC and nearly ran into the clinic…..I didn’t want to be late………I stepped off the elevator onto the second floor…..I still remember the drill….left is peds, right is adults…….In a little room to the left is exactly where I heard those dreaded words way back when Folden was only 17 months old…….Good Lord, now I have to go to the right….What will I hear over there? I get in line behind several people…amid the abundance of chaos………..State hospitals, I hate ‘em……I get a ‘book’ to fill out and then I’m sent to another room…….I’m in there alone with an older man in a wheel chair….I wonder, ‘Where’s his family’…….He asks me, “Which is better, this joint or Duke?...”……..’Well, it depends on what’s wrong with you’……He sat back and dozed off…..(Fine, I’m not a great conversationalist anyway!) Shortly afterwards, my name was called……(Off I go to one of those ‘little’ rooms….I really hate those little rooms…..) The nurse does the weight and height, blood pressure, heart rate…normal stuff………..Tells me to undress from the waist up and the doctor will be in shortly…..(Yeah, I know what shortly means)………..About 10 minutes later, a young doctor comes in…..(Definitely not Dr. Carey….) She introduces herself as a fellow…(Okay that’s good….)……She goes over everything she has on me….Since I came in on such short notice, they couldn’t get very much of my information from all the doctors and hospitals involved……She asks about every question you can think of….including, Are you here for treatment or a second opinion….(Okay, I have an opportunity to see the triple negative wizard, and unless she has horns or goes into cardiac arrest, she will be my doctor!)…..I simply said treatment. We talk about a lot of stuff including my ‘crazy’ blood counts after surgery….She was puzzled by my counts being so out of whack and then two weeks later perfectly normal…..She thinks my labs were mixed up at the hospital….(hmmmmmm?.....only me, right!) She starts checking my incisions….Since I had already had implants, I didn’t need them removed only to replace them with spacers and ultimately more implants….So, for my mastectomies, they just removed all the tissue from the muscle up and left the sub muscular implants in tact….And before I start getting the negative version of implants…let me tell you, in theory, they saved my life…..I am really not a vain person….If you saw me on any given day, you would already know that….but after nursing 3 children, my once perky size Cs looked like tube socks hanging from my chest….with a rock in the toes….After Folden died, I figured it wasn’t a big deal…..let’s just live a little outside the box….so I had a lift and implants…….The doctor said if he had ever met anyone who needed augmentation, it was definitely me…..! (Hah, thanks?) Because of the implants, my breast tissue was moved forward above them….pushing the ‘tumor’ to the surface…..I asked the breast surgeon if the implants had in any way caused the cancer….she said no, it probably helped bring the area into view of a mammogram….before the implants, the infected area would have been too deep to see on normal mammography….By the time it could be seen, it would have probably been too late…..I have another breast cancer friend who told me she had the same experience….So, I’m not promoting implants but mine saved me from a much worse outcome………Back to the doctor….She looked me over and began to feel underneath my arm for nodes….I said, if you rub the other arm like that, you and I may have problems……She said, why is that? (1. I’m not a people person and having a stranger groping me is extremely uncomfortable….and 2. That sucker HURTS and I can only imagine how pushing on it that hard will exacerbate my already sensitiveness to my whole right side….Got it?) I simply said, it’s a little tender over there…….I assume she wanted me to know she was in charge, because she proceeded to grope my right side, along with my neck all the way up to my ears…….Then another heart, lung and back check………..She was pleasant and went on to tell me she was a second year fellow……(That’s good…lots of experience) She collected her things and said, stay here, Dr. Carey will be in shortly….(Yeah, I know what that means)…….This time it was about 20-30 minutes later….My anxiety was growing……(Very surreal! Sitting here…waiting for chemo options…..Is this my life?) In walks Dr. Carey and the fellow……(I swear I thought I heard a drum roll!) She casually sits down…very normal looking….like one of my neighbors…..She talks about treatment and what I was told at NC Cancer Centers…..”Is this a second opinion or are you looking for treatment…..(Ahhh, Cancer wizard? Hmmm…what would you do?) I said, from what I’ve read, you seem to be the lady in the know……I want to stack the cards in my favor as much as possible and I think my odds might be improved with an EXPERT on my team…..She said, anyone who treats or does research on breast cancer is dubbed an expert…….(Ok, way to pop my bubble there sister….) She talked on about research and odds and so on…..most was stuff I already knew….other things were from articles I had read…..She really was on top of her game……She kept dismissing the expert thing….and talking to the fellow like she was my doctor……..When the fellow started rattling off treatment, protocol and so on…..I blew the whistle…….I guess my anxiety had risen way too high and my expectations of meeting this ‘wizard’ were equally as high……Maybe I felt disappointed……I don’t know….But I said, (out loud, this time)…..”There is something I want you to know…I am LORI LEE….I have triple negative breast cancer, stage one….I have two kids, a husband and a crazy dog that follows me around the house whining……I came here because of your reputation and I expect to be treated by YOU, the expert…..I don’t care who I see or how they act….Its not a popularity contest for me…but a fight for my life…….I will do anything to see my girls grow up and I think a good part of that possibility depends on YOU, the expert…..I will do whatever you tell me and no offense to you as a fellow but I want to know that YOU are in control of my treatment and I don’t slip through any cracks that may come about…………….I was waiting for a FINE, I, the EXPERT will CURE your freakin cancer but I hope to never see you again! Actually, she stayed calm as if she had heard it a million times and said that eventhough the fellows, interns and residents would be following me on her behalf, she would be deciding my treatment…….Then I cried. Not a full sob….just a few tears down my cheek…..(Ouch, I don’t like to react….I like to follow instructions and do what I’m told….but I really needed to say all that for some reason)……….Funny thing is, she asked if I had anyone to help me through this….I guess I gave her the impression that I was alone and hopeless…(and probably in desperate need of a psych consult…can anyone say, ‘little PADDED room’?)…..…..She said you will need friends to get you through the rough spots……I simply said, my in-laws live upstairs, my cousin lives downstairs, my mom is at the end of my driveway and I could make one phone call and at least 10 of my friends would be right here to carry me out of this place if needed……Have you seen the Verizon commercials???? ………She sat back and simply said, “Good”. She concluded by asking a few more questions, defining my probable treatment and then the best part…..She said, you have a lot on your side, including the fact that it was caught so early……(Okay, thanks for that!)

The nurse came in and did a few things, I really don’t remember what at that point….I was sent to check out in yet another little room in a corner……..I took a seat as instructed and waited. I was deep in thought….(Was this the cancer wizard I had read so much about ….the same one that I have so much faith in to cure me??? Wow, was it really a good idea to piss off the fellow when I know I will see her more than anyone else…..Am I doing the right thing….will I get lost in the massiveness of this hospital…..Is she really an expert or does UNC have a great marketing and PR department?) Before the ‘checkout lady’ called my name…she said to me as if answering a question….(I know I didn’t say anything out loud)….but she was somehow responding to my thoughts…..Mrs. Lee, you know Dr. Carey is world-renowned…world renowned. And Dr. Dees is equally as amazing….(Okay, she answered my mental question….Are you sure I didn’t ask that out loud)………Then, she handed me a card with my appointment…August 20th….one day before the other doctor…..well before the imposed deadline……(Okay God, is this supposed to be my sign that I’m in the right place? )

Short version: I go back to UNC on August 20 at 9 am to see ‘a doctor’….(probably the fellow that is certain to stick me just for the hell of it)…..and chemo starts at 10:30…..I will do 4 treatments over a 12 week period….my hair will fall out….and I will feel sick and tired on some days…..I will basically be able to carry on a normal life during chemo….with careful consideration of the germs around me…..Dr. Carey said for a while I will have to pretend I’m a germaphobe……(Pretend?) My odds of survival are still the same…..86% of women who choose my course of treatment are still alive and disease free at 10 years post diagnosis…..I have come to understand that if the percentages are not 100% or 0%, then they really don’t matter…..I find no real comfort in statistics…..

As you can imagine, the past few days have been hectic. I sat on the beach and wrote most of the afternoon while the girls played in the water….Right now, it’s the night before the dreaded chemo infusion…….I can practically hear the clock ticking away the minutes……..The hospital called and informed me I would need to be there at 8 to see Genetics….They want to see what I may be passing on to my girls, I suppose. Wow! An appointment at 8, 9 and 10:30…busy day.

I don’t really have a lot of profound thoughts……Mostly, I’m just worried. I’ve read so many horror stories about the aggressiveness of 3neg…..But I have also heard a lot of successes…….I just pray that tomorrow will be the beginning of a successful outcome for me……I’m really not afraid to die…..I think Heaven will be great……I just don’t want to leave my girls behind…….I struggle with that constantly……I haven’t had enough time with them….they haven’t had enough time with me….I haven’t taught them everything they need to know to get through this life…..and every kid needs a mom…..

It seems weeks have passed since I started this post…..I have been spending all my time getting my stuff in order….School shopping mostly…meeting teachers, visiting schools….watching the girls play…running here, running there…..basically my normal life…….Eventhough I’m in a terrible and unpredictable situation, I am no longer cowering in the corner……That is a relief….Life had gotten too big for me…..As I look back, I think I actually started creating distractions to keep myself focused on something besides grief…..As I began to need more and more distractions, my plate filled to the point that I simply couldn’t handle it all……I have spent the last few weeks weeding out what is necessary and what is not…….I simply have to do what I can. I wish I could have seen that from the beginning…..Maybe I would have saved myself a lot of self inflicted stress and worry…….No need to look at the what ifs, I can’t change what’s behind me….I have to look forward and do what I can to deal with what’s ahead of me….Hopefully, I’ll be a better person at the other end of this thing……Stronger, wiser and more focused…….cancer has a tendency to do that to a person. I’ve read lots of the same types of comments made by Melissa Etheridge….Sheryl Crow…..and now, Christina Applegate……It’s a shame we can’t figure out that part of life without having to go through something so hard……

I guess I will sign off for now……More later…Please pray that I have chosen the right doctor, that she really does know what she's doing and this treatment will give me an advantage in the fight against the disease......Thanks so much for your prayers so far......And as always, please remember the children and their families who are battling childhood disease and injury.... ..~L

Thursday, July 31, 2008 10:09 PM CDT

...just a short entry to let you know I'm still okay. I am recovering well from the mastectomy....not as bad as I expected.....I was on a boat less than one week post surgery........I have been able to resume most of my normal daily activities....My right arm is still a little tender from the node surgery....otherwise, no complaints. I went to see my plastic surgeon today. He says I am doing GREAT. In fact, rather than the normal weekly visits for a month, I am already shifting to every other week.

I also met with Oncologist #1 today. Dr. El Cordy (not sure of the spelling) is a wonderful female doctor at Cancer Centers of NC.....She has a calming personality and I can tell she knows what she's doing. The doctors are still concerned with my blood counts....however, improving my eating habits has helped a lot. Dr. El Cordy seems to think I may have a kidney problem....and they are running more tests to see what's going on. Hopefully, its nothing serious....Meanwhile, she outlined my chemo regimen. I will do one of two different chemos. I will take chemo for about 4 and 1/2 months starting August 21........Here's a few statistics for you: 29% of women with my type of cancer who elect to only have mastectomies relapse within 10 years.....Only 14% of those who have mastectomies and chemo relapse within 10 years. So, to make the odds more likely to end up in my favor, I will of course choose to go forward with the recommended chemo. I have also decided to get a second opinion from one of the doctors at Duke or UNC.....I want to be sure I've picked the right doctor for this part....It seems to matter as much, if not more, than the mastectomy. Being treated at one of the academic hospitals can only increase my chances of survival....Can't imagine I'll meet anyone I like more than Dr. El Cordy.

I have been worried about chemo...especially since I'll be starting right around the time school starts....As a mom, that is a very demanding time....I understand the effects of treatment has the potential to kick my butt....Today, God sent me one of those subtle little signs....As I was giving at least a gallon of blood, another woman who appeared to be only a few years older than me, sat down close by to have her own blood drawn....She was bald, so I know she was well into chemo....She had on a cute sundress that revealed a scar from a recent port......Other than the scar and her lack of hair, she looked completely normal....She wasn't moving slowly nor did she seem tired or sick......I can only hope I can do that well through most of it.....I don't look forward to it at all....but I'm ready to get started and get it behind me......I'm REALLY, REALLY ready to get back to my life.......

Enough for now....I can't thank you enough for continuing to check in on my family....thanks especially for your prayers.......They have made the most difference. ~L

Monday, July 21, 2008 0:49 AM CDT

Rantings of a crazy woman continued….

You know, cancer has taught me a lot in my life…..Going through Foldie’s journey, I learned so much about faith, hope and love...As I look back on that long, difficult journey….I realize how much it all changed me….

After Foldie died, I spent most of my time submerging myself in Me Fine….That was my form of grieving…..and I knew, if I was successful, Folden’s life would not have been lost in vain….it counted somewhere along the way and because he lived, others benefited….He made a difference…..I did not realize so many others would jump on board and help so significantly…..It has been incredible watching it all unfold…..I guess, all you have to do is put forth the effort, God will provide the rest……

As I said in my earlier entry, I did come unglued for a while…I think it all just got too big for me….Me Fine, problems, life….but as I began to get myself together….I did soon realize exactly what was important…..Being diagnosed with breast cancer has added a whole new layer of knowledge that I never had before…..Let me tell you a little about that…

After I got the official word, BREAST CANCER…I flipped out…..I know there is a divine plan and I couldn’t figure out if God had finished with me or if He had something new in mind….I was hoping for the latter because I’d really like to see my kids grow up! As soon as word got out, people I haven’t heard from in years began to call or email to let me know that they were thinking of or praying for me….My mail box was full of greeting cards….it was amazing…simply amazing! Then, I began to hear from people I didn’t even know….I heard I was on prayer chains all over everywhere…..Again, amazing….In the days leading up to surgery, I stayed at the beach…..I didn’t want to face the reality of home, so the girls, Folden and I enjoyed a few sunny days near the ocean…He came home for work and the girls and I stayed til Tuesday…..During that time, I began to think about all that I had learned in the past few days………….I learned that I want to be a better person…..So many people had literally stopped what they were doing to let me know that they were praying for me or thinking of me…wishing me well, etc…..I know how much difference that has made….knowing that although I have to face this alone….I am not alone…I decided that I want to be that for someone else....You just never know what one word or one gesture can mean to another person who is facing a hardship…..I want to know that I did whatever I could to make them feel better, if even for a moment…..I guess I really didn’t understand how important that is……....I learned that my two daughters, no matter how aggravating they can be and how much of my time they demand…they are the most important thing to me in the world….and they deserve my best…..whether it is my very best or the best I have to offer at that moment….I also learned that I adore my family…..My cousin would not accept no….she was determined she was going to be at the hospital during surgery….She has faced a lot herself….Hodgkin’s at 20, breast cancer in her late 30s……She’s definitely been there…..After my diagnosis, she was one of the first ones at my house…..sharing her thoughts from her own experience made me feel a little more at peace.....My aunt was there and several others…..Most of my family understands me…I don’t like a crowd….I do not need to be babied….I was really beginning to feel a little guilty for dragging everyone away from work and daily duties just to baby sit me at the hospital…..but I can’t tell you the relief I felt when they wheeled me down that hallway from recovery and every face I could see belonged to someone I knew……I will never try to face anything on my own again…..I will definitely be calling in the troops… ….People have been so generous with their time….I have a house full of food, flowers, cards, candy…..you name it….and I can promise you, with one phone call, countless friends, family or strangers would be here in a blink to help however possible…..I want to be on that list for someone else…..I will never forget how much it has all meant to have others to count on…….I will never forget. I have also learned that holding a grudge or ill feelings for someone else not only hurts them, but it hurts me, too….like poison in your heart……I have learned to say I’m sorry….whether I think I’m right or wrong, I’m sorry is much simpler to deal with than continuing to hold bad feelings for another person….I think you have to mean it….but if you think about it, most every time there is a disagreement…it is based on a misunderstanding of intentions…..I have spent a lot of time trying to reconcile any misunderstandings I have been a part of….I can only hope it is taken for how it is meant, sincerely.

Now, back up a little……..We got to the hospital….Me, of course, mom and Folden….shortly afterwards, my aunt and my cousin came in……During pro-op, my pastor and my aunt’s pastor came by to pray…Tyler and Jill came by and of course, FW.…There were a couple of different things I had to do before surgery, so I was wheeled here and there over the course of the next three hours….At about 12:30, the ‘team’ came to get me and take me to the OR….I was taken to a holding area near the OR while they were setting up…….I was left there by transport and for about 10 or 15 minutes I was by myself…..A nurse stopped by to let me know they were almost ready…to just sit back and relax and they would be with me shortly….yeah, right! Relax…what does that mean…..??? Anyway, I was just lying there thinking…..all of a sudden, a conversation began in my head…..I said, ‘God, I don’t really want this stuff to be in my lymph nodes’….God said, quietly and simply, ‘Its not’……I said, ‘Really?’…..God: ‘Yep.’…….Me: ‘Then what’s the purpose in all this’…..God: ‘You needed to be brought back’….Me: ‘Brought back?’ God: ‘Yep, you are not being who you should be’….Me: ‘I understand.’ God: ‘It was just time’….Me: ‘I understand’…..Then the nurse came back again to check on me….after she left again, I said, ‘you still there?’ God: ‘Yep’….. I said, ‘Will you please let me raise my children’…God: ‘Yep, you’ll be around til you’re 82’…..Me: ’82?’ God: ‘Yep, 82’……Me: ‘Hmmm, 82.’……God: ‘Haven’t you realized a lot in the last couple of weeks?’ Me: ‘Yep’…..God: ‘Stick with it’….Me: ‘Okay, thanks.’ At about 1:00, I could feel this gentle cyclone of prayers and thoughts and love swirling around me…..It was as present as the noises around me…..So present that I could almost see it…..I began to realize there were people in the ‘rooms’ around me and I thought, ‘please swirl around them too!’……..It was an amazing experience…..I can’t tell you if it really happened or if it was just another one of my ‘experiences’….but to me, it was real as rain….and it probably kept me from losing it during the moments before surgery……I was really scared….but a quiet peace began to develop and I knew I was going to be okay………Off I went to the Operating Room to have my boobs removed……Surreal!

Okay, now I’m in recovery and people are moving around me quickly and worriedly. I knew immediately…something was wrong…….No one would talk to me….I just kept hearing beeps….The faces of the people around me were unfamiliar and very, very serious….I can’t tell you how much time passed…..Folden said I had to be there about 3 hours……People kept coming in and checking this or that and then leaving….everything was moving quickly………The nurses would ask me about my pain or if I wanted an ice chip….otherwise, nothing….I would watch them move to the end of my bed and talk….I finally heard one ask the other, ‘did they get her nodes?’ The answer was, ‘yes’….I knew if they removed my lymph nodes then I was positive…not a good sign……….After what seemed like forever, I didn’t know what else to do but cry…..I felt the tears begin to roll down my cheeks…..Man, I could really use a tissue…..but I couldn’t see tissue anywhere…..I’m sure I was still in la la land………I was still under oxygen….no one seemed to notice when I pulled it off…..I was still crying and everyone around me was still moving quickly….and acting very, very serious….I wondered for a minute….did I die?

After a while, I could tell I was moving….I must have drifted in and out of sleep…..the next thing I remember was the elevator doors opening….My whole family was lined up down both sides of the hallway…..Suddenly, my cousin Lynne appeared near my face and I could see Folden near the other side….He was talking to me….He asked me if I had talked to the doctor….I said ‘no, but I know its bad….I can tell by how everyone is looking at me’……He said, Lori, your lymph nodes are clear! I was stunned….I said, ‘are you sure’….He said, ‘YES! You’re fine!’ I burst into tears at that point……I just couldn’t imagine that I was okay after how everyone had acted in recovery…..Apparently, my blood pressure and heart rate bottomed while I was in surgery…..They were trying to figure out what was causing it all…..and working diligently to make sure I was okay….

So now, I’m in my room and my mom, husband, cousin and aunt are trying to help get me settled….Wow! Huge sip of Diet Mt. Dew….. and TISSUE!!!!!!!!!!!!!!! They all started talking about the events of the past few hours….The doctors had said everything went great…both surgeons were extremely pleased with the outcome….and no node involvement was excellent news…..However, my blood counts were a little off and that needed to be addressed……One of my doctors thinks that with all the stress over the past few weeks, I had not been eating properly…which is probably true….and I became anemic…..I have been instructed to eat…eat….eat……….Hmmm, that’s not bad! I am trying to eat better than before….meat, vegetables….etc…..drink lots of fluid….I may have been a little dehydrated too……Anyway, we’re hoping that will fix the problem….my heart rate is back up and my blood pressure is stabilizing…….In the back of my mind, I’m still worried that the crazy blood counts are an indication of something that hasn’t been discovered yet….I suppose I will always worry……at least til I’m 82………Hopefully, when I go back to see my primary surgeon, my counts will be back to normal….I just had my physical in March and everything was like it should be…..maybe worrying has sent my health into a tail-spin….I can only pray that nothing else is going on……

Right now, its about 11:30 in the evening….I have found enough strength to take a shower…..with mom’s help of course….(having cancer can be a humbling experience)…..GRose took the girls to the beach right before my surgery and they just got back home today….so I have been watching them swim…..don’t want to miss another second of their happy little faces………..I am spending a lot of time counting my blessings….thankful for my life, thankful for my friends, (the ones I know and the ones I don’t know)……..thankful for another day……I am contemplating my future….how to be a better person/friend to others…and how to use my life to make a difference for whomever I can……….I am working my way back to a healthier, happier me…..and that’s about all I can do for now…….I plan to find my peace again…..rely more on my faith….maybe even spend time strengthening my faith…….Sometimes its just hard to let go and know that God is in control…..That is really hard for me…..I look forward to another ‘conversation’ with Him….Maybe next time, He’ll just simply be able to let me know I’m on the right track, rather than having to redirect me…..

I guess before I sign off, there are just a few things I want to add……I can never say thank you enough to all of you who went through this with me……Knowing that I’m not alone has helped more than you will ever, ever know…..so much, that I want to follow your lead….If someone out there ever faces something hard….whether it’s cancer or simply a bad day, you can bet your sweet behind you’ll see me around….if you don’t, call me…I’ve obviously not heard about it yet……Maybe in some small way, I can help. Secondly, I started the CaringBridge site to keep everyone updated on Folden’s journey. After he died, I didn’t stop journaling. I did it for two reasons: One, for my own sanity….writing it all down helps me put everything in perspective….and secondly, somehow I think my honesty about my own successes and failures might help someone else along the way. I stopped writing for a while because it seemed everything that came to mind was useless….just a big fat downer…..After I ‘came clean’, I got several emails from people I don’t even know who basically said, ‘Did I write this?’……We all tend to hide behind some self imposed masquerade that everything’s fine….but normally, its not….Its either family problems, work problems, personal problems, friend problems or whatever…sometimes big, sometimes small…..…..When we finally get the nerve to talk about our thoughts, our feelings….etc, etc, etc….we soon find out that others share those same battles…..I learned that several different times during my life…..mostly through ‘coming clean’ phases……To my surprise, most everyone has been through about the same kind of stuff at one point in their lives or another…….If we could all get the nerve to share those experiences, the good ones and the bad ones, we wouldn’t have to figure so much out on our own……..So, I am going to go right ahead and volunteer to put my crap out there….maybe knowing that someone else faces the same daily trials will help another person face their own…….so, rantings of a crazy woman will continue until I’m shut down……Hopefully, it will help me find my way back and help you not feel alone in your own life…..Even after all I’ve been through, I still think life is good….its what we make it….but most importantly, we are not alone here…..God is with us always…..I think about how we are so often referred to as God’s children…..If I were to put my children through something that scared them like breast cancer has scared me, then it would have to be for a very important lesson….So I know that God has made me do this to teach me something extremely important……I intend to follow His direction and try my very best to learn whatever I am suppose to learn…..(I personally think it would be much easier if God would just send me a direct message….a little less encrypted maybe)….but it is what it is and I will have to do with it what I can……Hopefully, I can accomplish what I am supposed to accomplish….Thanks again for all the prayers, thoughts, messages, cards, calls…..You will never know how much better your effort has made this chic feel…….Please continue to use your powerful prayer talents for those around you…..slip one in now and then for me…..I’m only half way through this thing and I would like to continue the positive momentum we have going on……~L

Saturday, July 19, 2008 9:38 PM CDT

Just a quick update to let everyone know how I’m doing.

I am home…doing fine. Nodes were negative….YAY!!!!!!!! The mastectomy part is not that bad…I haven’t gotten my nerve up to take a look….but it really doesn’t matter. Underneath my arm, where they did the node dissection…that hurts. Nothing unbearable, though. I can’t take anything stronger than motrin….so we’re dealing with it….I’m just grateful to be on this side and NED….no evidence of disease!!!!! The rest is doable….I do want to thank everyone for your prayers…..At exactly 1 pm, I was sitting in pre-op waiting for them to set up the operating room….I had about 10 minutes alone. I swear I could feel your prayers and thoughts circling around me….It was amazing. I will write the long version tomorrow maybe….right now, I need to sleep. Just know that I am grateful to all of you who have prayed for me….I really believe it made a difference in the outcome. ~L

Wednesday, July 9, 2008 9:53 PM CDT

I have been ‘reminded’ several times lately that I’ve stopped updating Folden’s Caringbridge page. We have all been so busy with Me Fine and a few additional stresses that it just seemed to keep getting pushed into the ‘later’ pile. Well, here is the update of the year…..I don’t know what you’ll think at the end of it, but it is what it is….

Me Fine is going well…..Lisa Valentino is still the fundraising queen. With a lot of hard work, Lisa is putting Me Fine on the map…..The new possibilities that have arisen are astounding…..It amazes me that so many are generous enough to look our way and help however possible……We have really been lucky over the past couple of years. Jill is overwhelmed with all the new families that are coming in…..it seems we can never keep up with the needs. Jill has given Me Fine an additional edge. She has met each family that we assist, personally. I think that is awesome….Sometimes, when our funds are so low, we have to hold assistance requests until more funds are available….but they can at least count on us physically being there….We never want anyone to feel they are taking the walk alone……

The thrift store on 70 is also doing well…..Lisa Lee has been managing it for nearly a year now and I can see so much improvement….We closed the small store in Princeton and moved Aunt Margie over to 70, as well…..Man! Those two together are awesome…..Stop by Second Hope Shop on 70 Hwy near Princeton if you need just about anything…..We still have a lot of outdoor space if anyone is looking a retail spot in a high traffic area.

To increase my already exploding stress level….I have opened a spa in Clayton for young girls…..It’s All About Me is a tween to teen spa specializing in manicures, pedicures, facials and makeovers for youth aged girls……Check us out at www.allaboutmegirlspa.com. We’ve been open since February 1 and are doing better and better each month……Its really a cool place for young girls to go and get pampered….birthday parties are a blast and we even have services for ‘mom and me’…….Fortunately, my friend Tracee is running it….most of the staff doesn’t even know who I am……Since we started the spa business, my life has gotten completely out of hand and my time has been stretched way too thin.

Okay…that’s the public me…..Personally, things are a little different. I guess my personal battles are the main reason I have not updated. After so many years of battling against childhood leukemia, who would want to hear that I have completely come unglued? I have always tried to keep my updates as honest as possible…mostly because I can remember how someone else’s honesty made me feel worlds better about my own personal thoughts or actions. But, I guess this just seemed more of a downer than anything else…….So, as we all know, God works in ways we do not understand. Here I am after all these months coming clean on the past year or so……..

~For so long, I held it together. I watched family after family face the long road ahead. I am so proud of Me Fine Foundation and all the hands and minds that go into making it work. I have seen so many miracles, so many lucky breaks, but mostly so much hard work and complete dedication. No regrets there.

Cancer taught me to keep life simple….enjoy the uncomplicated stuff and find glory in the most trivial detail….like butterflies or an odd shaped cloud……I know this…..I really do know this! I guess at some point I began to wonder if I had gotten too simple…..Maybe there was something I was missing…….So, I looked around….hoping to find something to fill the void that was developing inside me……You know, I’ll try most anything once…..excluding drugs, small spaces and anything to do with snakes…..otherwise, I’m in! Being a good mom and wife was beginning to draw so much of my energy….I think I wanted a distraction from the daily sadness that I could so profoundly see in my family’s eyes….Truthfully, I don’t really know how it all happened….it just did…….For several months, I lost my footing…..I went through the motions….I did what was required, but I don’t think I put that much of my SELF into it……Folden and I began to grow apart…..He was as distracted as I was…..I could see everything coming apart……and I really didn’t care that much……..Folden and I no longer depended on the other for our balance……it just all went south fast………..Fortunately, God will only let you go so long before he yanks you back…….It is really like I just woke up one day and thought, ‘How did I get here?’ Imagine a slow, intermittent drip...drip..…drip…………….…drip, drip… …………….…drip, drip, drip….Before long, you’re facing a waterfall!!!!!!!!!!!!!!! It didn’t start out a waterfall…..but those slow leaks just kept popping up…and I didn’t do anything to stop them……….It’s not like I could see all this happening…..I believe I would have done something sooner…..I think the changes in us all were so subtle that we didn’t even notice how far we had gotten from where we once were………….Thankfully…one day I woke up! I started to see my life for what it was……….My kids were taken care of, but not nearly as happy and content as they had been……My husband was still my husband, but not necessarily my best friend nor the person I depended on…I was still mom and wife, but a diluted version of both…………..…..We had all changed so much in such a small amount of time………….Okay Lori….Get it together…….Remember what’s important…..what matters! Just as it came, it went…………….I had to get myself out of this little pity party and get busy living……I can not change the hand I have been dealt…..but I can determine how I play it…… …………I think at that moment, I began to get it all back together…….and then I could see the pathway to my destruction……….I can only explain it as this………Imagine being in a batting cage…….One ball at a time whisks toward you…….Burned dinner! Swiiiing! You miss it………Okay, today is not a good day…..better luck next time….…….Next one comes at you…….Stress! Swiiiiing! Good hit! Then another….Argument with your husband…….swiiing! Pretty good! Then another…..late for an appointment……swiiiing……….gooooood shot!..........But suddenly the speed of each ball increases…………..Kids had a fight at school! Swing…..missed!..........Kids’ grades dropping…………swing! Missed…….Husband is NOT in a great mood………Swing! Missed………Car trouble….swing…missed……Something went wrong at work…Swing…missed….Big dose of GRIEF……Swing…missed! Then all of a sudden….the machine kicks into turbo……………Kids, husband, stress, dinner, school, work, parents, kids, husband……friends….stuff, inflation, gas prices, kids, husband, dinner, stuff……..Swing, swing, swing…..Finally, you drop the bat and fall into a defensive position……No use trying to swing…..you’re going to miss anyway……………………

Fortunately….I did decide to pick the bat back up, at some point, and try to hit the ones I could……Its funny-nearly every bad thing that has happened to me, something good has come out of it………I do believe even my mini-breakdown had purpose…..For the past few months, I think I’ve gotten it together…..I’m not perfect by any stretch…but I have been trying to focus on what is important…..what really matters! The girls and I are on more stable ground……I am trying to refocus my attention……….For so long, I tried to compensate for all the bad they had faced….I let them off the hook way too much……Lord knows, its easier to clean their room yourself rather than make them do it…….but it does not make happy kids! It makes confused kids, insecure kids……Kids need to know someone else is in control……

Folden and I even took some time apart for a while…..I think he was trying so desperately to keep his own head above water, he didn’t have time to focus on us….and vice versa……Statistically, couples are not likely to make it through such a life changing event……We’ll have to see what is in store for us……………

Okay…..let me make sure I’ve caught up here…………Came unglued for a few months……..Got it back together, hopefully better than before……Finally have my path figured out…headed out in my new direction…….ready to take on the world………………………………Then BAM! Breast Cancer……..I have been diagnosed with Stage 1, ductal carcinoma…..triple negative…..……I could tell you all the specifics but I am so early in the game, nothing is definite……………..I have had the lumpectomy and am awaiting a double mastectomy….Then chemo…not sure about radiation………….So….once again, I get my life in order…the way I think I have been led and suddenly someone changes the rules…………Yes, I am scared to death………Yes, my kids are scared to death………(Anna Gaites said, ‘Why won’t God just leave us alone?’…..Wilson said, ‘I’m really not that surprised!’)…………Now, that SUCKS! I realized a long time ago that my life is not about me! But Wilson and Anna Gaites having to go through yet another family crisis……….that is not right………..I don’t know why this is our next journey…….but I believe there is a reason and hopefully…..I can do whatever it is I am supposed to do…………I am not the only one out there who has faced this kind of thing…....Its kinda like a mom once said in her journal…….People ask all the time, ‘why me’……I figure, ‘Why not me?’……………………… …Maybe God was just so impressed with Me Fine that He figured the Foldie Camp had one more in us! (I’ve checked, there are some REALLY good breast cancer organizations out there…..He certainly didn’t have that in mind)…….. It really doesn’t matter…..I believe God is in control and whatever is meant to be will be……I understand F-A-I-T-H! Now, don’t be confused……I have been freaking out…..I am scared silly………I wasn’t expecting another life changing event for a while……..But, I am still upright and moving forward……So many people have already come out of the shadows and let me know I am not alone…..Its cool to get a card from a church that is in another part of the state…..or from an old caringbridge follower…….Over the past year or so, I have been blessed….even in the middle of my own personal crisis…….I have learned who my friends are and who they aren’t…….I have learned to face my own shortcomings…..I have learned that my kids are amazing……I have learned that God is in control…..and that He WILL give us more than we can handle—alone. I have learned that God places people in our lives not only to guide and teach us…but to help us find our potential……to live up to who we are designed to be……..I feel sick that I wasted even a shred of time on feeling sorry for myself…..but I think it reset my thinking a little and prepared me for this new journey…….

I think I will be having surgery a week from Friday……..There are tons and tons of people out there who need our prayers…….If you could just squeeze me and my family in somewhere….I would appreciate it………I feel like I’ve asked for more than my share over the past 3+ years…..but here I am again………As always, please remember the parents who are caring for their children as they face scary treatments and uncertain futures……And if you don’t get one other thing out of this update, I hope you will remember to see what you have been blessed with…….It really is a waste of time to sweat the little daily annoyances…..We should all give life the best we have….and that’s it…….I really think that’s all HE requires….trying to be perfect, remarkable or even fabulous is just simply unnecessary…….It diverts too much of our attention away from those things that are already perfect, remarkable and fabulous…..~L

Thursday, November 8, 2007 7:28 PM CST

Please join us for our Christmas Open House at Second Hope Shop...5100 Hwy 70 East, Princeton....November 13th, 2 to 4.....Great deals on Christmas items....Hope to see you there.

Keith Henderson in "Illusions of the King" and Diane Bailey in "Sweet Dreams Again" will be held at the JCC, Paul A. Johnston Auditorium on March 1st, 2008....Tickets on sale now--$18.50 each.......email me or call Jill at 278-8673....

If you would like to receive a copy of our current newsletter, please email Lisa Valentino at mefinedevelop@aol.com...

We would love to have your unwanted furniture and housewares items at our Hope Shops....donations are tax deductible....

We still need groups or individuals to adopt a family for Christmas.....Contact Jill to make a huge difference during the holidays.... mefinefoundation@aol.com...

~L

Monday, October 8, 2007 4:45 PM CDT

(Written by Jill King, Director of Family Assistance)

When Lori asked me to update our journal this time, I immediately said Yes! I thought, “Here is my chance to get the message across.” I would be able to make all who read the journal realize the need for Me Fine Foundation. Through my eyes, people would see what “we” see everyday. I would be able to finally make a difference by speaking for our many families. THEN… my mind went BLANK. Fear actually set in believe it or not. What if I said the wrong thing? What if I did not represent our families well and do their stories justice? The only thing I knew to do was pray and ask God to give me just the right words to pull at the heart strings of all who read this journal. I am not reaching out to you through sympathy, but compassion. My wish is that everyone could share the same passion for these families as we do at Me Fine.

I say “families”, because everyone is affected by whatever illness the child faces. I see moms, dads, siblings, grandparents, aunts, uncles, etc… everyday doing whatever it takes to make their loved ones’ lives a little easier…“Families” pulling together to make a difference. Unfortunately, I also see those who do not have any extended family. I think I am humbled by these the most. It does not matter how large or small the support group, the need is still the same.

When I started with Me Fine, the first thing my mother told me was not to get too “personally” involved. I quickly found out that was “impossible”. It is impossible to turn your emotions off. This is not a job we are doing. It is a “mission”. We are on a “mission” to relieve some of a families’ pain, take away some of the burdens that keep them up at night, simply listen to them, make sure they have someone to call when things look grim, etc… Our “mission” is to make things easy for them, so they can focus solely on their child.

I believe with all my heart if everyone would visit Duke or UNC Children’s Hospitals one time, the world would be a different place. It is amazing what these children and their families teach you. I am a very spiritual person, and I am humbled every time I walk in and meet one of our families. I don’t feel sorry for them! I am amazed at their faith and outlook on the battle that they face. I leave them realizing just how truly blessed I am. Yes, there is sadness. Of course, parents are saddened by their child’s diagnosis…BUT... they accept this and go on.

The frustration comes by the obstacles that over shadow their child’s illness. Obstacles such as the loss of a job, the loss of utilities because money is gone, not having enough gas to visit their child in the hospital, keeping things as normal as possible for siblings, separation of families while their child is in the hospital, having to sleep in their car when the Ronald McDonald House is full, not being able to get their child’s medicine because co-pays are too high, etc… I could go on and on with obstacles I have seen families face. These are ALL obstacles that as a community/world, we could ease for families if we just pulled our resources together.

I recently had the opportunity to visit a family the foundation was helping in Oklahoma. I was a little nervous not knowing exactly what I would find when I got there. I knew Lilly was 15 months old and at home with her family having exhausted all treatments. I was full of emotion. I began watching people in the airport. I saw soldiers coming home from war greeting their families, a group of Chinese students meeting American students from North Carolina State University, a husband dropping off his wife and kissing her goodbye, and grandparents excited to meet their grandchildren who lived away. I thought about all their happiness and wondered if there would be any happiness in Oklahoma. The words that kept ringing in my ears were, “Have a little faith”. What An Amazing Family! Yes, they have a terminally ill child, but they celebrate each day they have with her. They have the kind of faith that moves mountains. I went to Oklahoma to help ease some of their financial burdens. I left Oklahoma a different person. It was truly a blessing just to meet them. I came back even more committed to helping our families. I could tell you story after story of families I have met during my journey with Me Fine. They are all the same. Wonderful families who have been dealt a rough hand….Families that could just as easily be yours or mine.

I guess my prayer for this journal is that you would take a moment… realize how blessed you are… and do whatever it takes to pass your blessings on to some of the families at Duke and UNC Children’s Hospitals. Pray for these families, and please pray for the work that is being done through the Me Fine Foundation. I believe in praying specifically. Please pray for Lilly and Liberty, our three glamour girls in the hospital, our little wrestler, our four look-a-likes, our future radiologist, our early ones, our train conductor, our future photographer, and all the children/families facing these devastating illnesses. I truly believe…TOGETHER…we can make a difference

Thursday, August 9, 2007 0:24 AM CDT

Just slowing down enough to catch my breath…..Where do I start??? Well, if you’ve been reading the journal, you will know that I’ve lost my side kick. Lisa Brown moved back “home” to be near her family and is no longer on staff at Me Fine. She has settled in and is enjoying being at the beach EVERYDAY!!!! Lisa and I have been partners in Me Fine from nearly the beginning. We’ve seen a lot, accomplished a lot and endured a lot…..I can’t imagine Me Fine without her. She has been my anchor…..the one who always brought me back to reality when I felt like giving up…..She has contributed so much to Me Fine, probably single handedly making Me Fine the best part of what it is…..Many, many families have benefited from Lisa’s involvement. I have had a hard time with the change. I know Lisa is doing what is best for her family, and having to make such a choice was not easy for her. She is missed tremendously and our gratitude for her gallant efforts will never be forgotten. Lisa took our families to heart. She gave them all she had and then some. Lisa has been the essence of Me Fine…..certainly big shoes to fill. So, how can I really replace someone like Lisa??? Family Assistance is not as easy as it sounds. We get new families in daily, plus the existing families’ needs carry over from week to week….With such limited funds, choices have to be made….who to help…to what extent….etc…..Its heart wrenching at times….knowing the needs are great and the checking account is ZERO!!!!

Jill has been working with us for several months. She has basically been helping run the stores…She helped Lisa with the families from time to time….and seemed like the perfect person to take over the FA department. Jill has a unique gift with children. As an eighth grade teacher, she has been trained and conditioned by pre-teens. As our church’s youth director, she has a special insight. Kids seem to be drawn to Jill and her mischievous nature. A kid at heart, she fits right in. I know no one will do FA the way Lisa did, but I felt Jill would be equally effective…adding in her own personality and strengths….So far, she has been a trooper. I believe she is going to be great at it….She’s had a rocky start, taking on 18 new families in just over 2 weeks….and of course, funds a LOOOOW! It is somewhat of a challenge to meet the ever growing needs….but somehow, we’ll make it. Should you like to “meet” Jill….she can be reached at mefinefoundation@aol.com.

We’ve had a few great accomplishments lately…..Eric Montross spoke on behalf of Me Fine at a Rotary meeting recently. Mr. Montross is an honorary member of our Triangle Board of Advisors. If you know anything about Eric Montross…you will know that not only is he a great ball player, but an equally incredible person. He has made such a difference for the children at NC Children’s Hospitals/CH…..He visited periodically even when we were on the floor…..He has raised awareness for the needs of the children and their families and made many of those kids simply smile! It amazes me that with all he is involved in, he takes time to share himself with so many around him. A video of his presentation will be available on the new website….The website should be unveiled in the next 30 days or so……We are really excited about that, too! The new site will be much more informative….professionally designed….Wow, the preview was gorgeous! …can’t wait to see it online!

The 2nd Annual Purse Gala is coming up in September….We need sponsors, designer or unique purse donations and all of you there to bid on these WONDERFUL bags….We’ve moved the event to the prestigious Embassy Suites in Cary….unbelievable venue!!!!! Contact Lisa Valentino for an invitation or more info….(mefinedevelop@aol.com)…..This thing is a BLAST! We all dress up, socialize and then the bidding begins. These purses are coming from all over the world and the stories that go along with some of them are amazing. Miss America 2005 is sending a purse…and the cast of “One Tree Hill”…..We have a couple of Felix Rey’s…..What else do I need to say?????? I stay in awe with how much this thing has grown in just ONE YEAR!

We have earned another pat on the back….Howard, Perry and Walston has selected Me Fine Foundation as one of the recipients of their annual giving campaign. HPW interviews several charities but only a few are selected…..I think its awesome that we have been given such an opportunity. We will certainly be working even harder to make them proud of their association. We believe in us and what we do….just gotta make sure others see our commitment!

Tomorrow, we are competing for a Public Service Advertising grant. Should we be chosen, we will be a part of a PSA campaign….maybe you’ll see one of our ads on your local tv station…!!!! We’ll get more information tomorrow regarding all the possibilities….I’ve been told we were in the top two…..That in itself is tremendous! There are a lot of great charities out there….many equally as worthy.

Let’s see….Iatria is offering another Me Fine Spa day….Ahhhh, who doesn’t need a massage and a facial???? Glen Laurel is hosting the annual Christmas Tour in December….beautiful homes…all decorated for Christmas….great way to get into the spirit….Hopefully, the website will have all this posted beforehand…..

Folden has gone into the charter business…..Yes, he’s still a dentist by day….but on the weekends, he charters his boat and does ½ day, ¾ day and full day fishing trips….Actually, he’s pretty good at it and 10f the charter fee is donated to Me Fine…..Folden earned his Captain’s license some time ago…and he has finally put it to good use….he’s always been an exceptional fisherman…and now his passion for the sport helps a child…..How awesome! He and Me Fine have been featured in several local sport fishing magazines.

I still need Food Lion MVP card numbers and Lisa is hoping to gain more support in the Dollar-a-Day Campaign. $30 can be drafted monthly with all proceeds going directly towards family assistance. Believe me, Jill is sitting at the door waiting for the next donation because it is so desperately needed before we even get it……Please think about participating in one of these events or campaigns….Families from around the world benefit from just the slightest effort.

Hope Shop is doing great….Aunt Margie has been operating the store for 1 year this week! They are closed for a couple of days trying to transition the stock over to fall/winter….Stop by if you can.

Second Hope Shop has been reorganized….Since Jill moved over to admin, a friend of ours has started in the store. Lisa Lee has many years of retail experience and is completely reorganizing and restructuring…..Phyllis and Company of Smithfield just sent us tons of closeouts from her gift store since she will now be doing online sales….The store is looking sharp….its more orderly and full of great stuff….many new items are on the way…..Its worth your time to stop by and take a look…..We are still in need of your furniture and household items….Those types of things go quickly and we can never seem to get enough.

We're about to send out the summer newsletter...Please send us your email or snail mail address....We're trying to update our address books!!!! I would love for you to see the pictures from our Christmas in July at Duke and Chapel Hill.....Santa was in from his summer vacation and took time to visit some of the children...Lisa Valentino and I elfed at Chapel Hill and Jill and crew visited some of the units at Duke. Most of the toys we delivered were sponsored by the employees at Talecris in Clayton. I feel fortunate that I was able to participate this year. I saw Cheryl, our primary nurse from Duke, Jim, our best buddy from Duke who is now in medical school...(awesome to see him in a white coat...he is going to be a great physician)...I saw Paula, one of our UNC nurses....and several others who made such a difference in Folden's journey....Seeing the kids was such a stark reminder as to why we do what we do.....It was breath taking!!!

Not only has the whole place been in the middle of a huge transition, we are also trying to become more efficient and organized internally. I feel like I have taken the whole place apart and am now slowly putting it all back together….I think Me Fine grew faster than I was able to keep up with…..and then with things being shaken up a little, well…its just been hard….There are only 3 of us in the office doing the job of a staff of at least 10. The stores are being run on skeleton crews….It is quite overwhelming….I sit back most everyday in amazement at all that has been accomplished in just short of 3 years….and as another anniversary approaches, I am thankful for our blessings…So many people have stepped up and given us a chance to prove ourselves based merely on blind faith. Many, many, very successful people have associated their names and their businesses with Me Fine and its mission….and I’m always afraid I’m going to drop the ball somewhere along the way…..I’m waiting for the time to come when someone pulls the curtain back and sees that there really is no wizard….just a short, bald man with a few smoke and mirror tricks….I spend a lot of time trying to talk myself out of recognizing my own inadequacies. I KNOW God could have made a better choice for this job. I’m very lucky…and I mean REALLY lucky to have people like Lisa Brown, Jill, Lisa Valentino and so on to put so much energy into this Foundation. Me Fine would be nothing but a thought without each bit of effort that goes into it…..and from what I’ve seen, everyone involved goes way beyond what is expected…just to make it all work. Because of so many amazing people, something is accomplished everyday. I’ve seen families with NO WHERE else to go, find a little hope within Me Fine. In June alone, we assisted over 25 families…..We purchased a laptop for a teenager battling HIV; made car payments for three families, paid past due mortgage payments for two families; paid miscellaneous household bills for 7 families; and purchased gas and grocery cards for 13 families….For the month of July, we assisted 16 families. We assisted with two large co-pays for life-sustaining medication for a 16 year old; paid for two different families’ car insurance to prevent cancellation; saved one home from foreclosure by paying past due mortgage payments; assisted with final expenses for a 3 year old; paid rent payments for two families; paid other household bills for 3 families; supplied secondary housing for two outpatient families receiving treatment at Duke; purchased wish list items consisting of a VCR for a toddler and a digital camera for 17 year old terminally ill teenager; provided a $500 Lowes Home Improvement Gift Card for a family living in sub-standard conditions; provided 5 Wal-Mart gift cards for $550; purchased $325 worth of gas cards, and gave $950 in cash to families for various financial needs.
One quarter of our budget, year to date, has been to pay final expenses……I can see progress. Still, we have to grow and strengthen to keep up with the needs. In looking at what we have to work with, it still astonishes me that we have stayed afloat this long…..It is a daily struggle to try and find ways to pay our light bill and then the light bill for a family who has lost most everything. Somehow, we’ve made it this far. I guess in the end, the lion got his courage, the tin man earned his heart and the scarecrow was the smartest dude in town….. Heck, even Dorothy made it home safely….Maybe all it takes is the effort…God provides the rest.

Say a prayer for Me Fine Foundation. Remember the families out there who are battling illnesses and facing fears at this very moment. Hopefully, we’ll all make it to the end of the rainbow. ~L

Friday, July 13, 2007 2:52 PM CDT

Hi everyone, Lisa B. here. Lori was kind enough to give me an open forum for my "goodbyes."

It was quite timely that she mentioned it to me now. As I was driving home yesterday, I was feeling down because my time with Me Fine is growing
short and I had just been in meetings with Jill and our bank account is low. Jill seemed so frustrated...she said, "What do you do
when this happens?" I said, "Basically, I pray alot!" As I was driving, I was thinking about how much we have done over the years
with so little. Lori and I always refer to the Biblical story of the loaves and fishes...it is all a matter of faith.

As many of you know, Lori and I have been friends for almost ten years now....we met at dance, Caitlin and Wilson were so little then..there was
a group of moms that would sit in "Miss" Ann's store during dance and talk. Then as dance class drew to a close in May, we decided
on a Dance Mom's beach trip. It was so much fun...six of us...off to the beach for a relaxing weekend. We learned alot about one another
that weekend! After that, each year we "lost" another mom..one got divorced and moved away, one had a husband who didn't approve of "Girl's nights out,"
one just kind of distanced herself from the group (even though she still remains my close friend). Now, the "Dance Mom's" consist of Lori, Tracee and me...
the girls are no longer in dance but still enjoy each other's company. Then over five years ago, Lori, Tracee and I all found ourselves pregnant. What an exciting time!
We all had boys and joked about no dance classes...probably be soccer or t-ball. Then came "THE" day...Folden was diagnosed and all of our lives changed forever!
I could tell you exactly where I was sitting, what I was wearing and what was on tv when Tracee called with the news. So many changes for Lori's family...so many changes and challenges
for Tracee and me. Many of you know people whose family has been touched by terminal illness...as a friend we often ask, "what can I do?" Honestly, I had no clue...I emailed Lori
every single day...looked forward to good news about Folden and prayed! I can say that the Lord used Folden to change "our" relationship. So many times we don't realize how much
we need God until something happens. Before Folden's illness and death, I considered myself a Christian, I prayed and tried to be a good person. However, with Folden's situation, my faith
in God was both challenged and strengthened.

After Folden's death, when Lori started the Foundation, I wanted to be a part. Originally, I wanted to work part-time and just help as I could. As circumstances changed and Me Fine grew,
I began to take on more responsibility. I began to feel that this was what the Lord had planned for me from the beginning. I had never had a job that I loved and couldn't wait to get to in the morning.
This was my calling. I took on the challenge of working directly with the families, helping them in whatever way I could. We had no ground rules and nothing to go by...basically, I was making it up as I went along.

Looking back, there are so many memories that I can take with me...I remember the excitement of planning my first "Make-a-Wish" type vacation, my first call to come sit with a family in PICU as their child passed from this world,
I remember sitting at my desk many times and crying until I couldn't see my computer screen. My "non-Me Fine" friends say they don't know how I do it. Faith and hope and the knowledge that even if a family loses their child, we have made
a difference while they were here. And we have made a difference! Every day, in a whole lot of ways, we are making a difference in the lives of families who often have nowhere else to turn.

Now, as I leave Me Fine, bigger things are on the horizon. The "little train that could" is fast becoming a full-blown steam engine! I am so proud of all that we have done and look forward to hearing more and more good things. Me Fine has some big things on the horizon and even though I won't be there physically each and
every day, in my heart, I'll always be a part of Me Fine!

My family and I are moving back to my home. I can't wait to be close to my family. And, I admit, being 15 minutes from the beach wasn't a drawback. I don't have a cell phone or home phone yet but my home email is candlisabrown@netzero.com , please stay in touch!

Thanks for a wonderful three years! Love, Lisa

Sunday, May 20, 2007 8:35 AM CDT

So now, did ya think I fell off the face of the Earth?? Lots going on, to say the least…..Let me try to recap….

December: Started the upfit on Me Fine Administrative offices….Took much longer than anticipated….Things were really a mess and we couldn’t find anything….Most of us just gave up and started working from home….

January-February-March….Still under construction and all of us were crumbling mentally…..Add in severe financial strain and you can imagine we were all looking for the nearest bridge…..

April and May….Construction is completed other than a few minor details…We started trying to simply find our stuff and get it back in place….BUT THEN…We lost Lisa Brown’s dad….devastating….(and let me add the most sincerest, heartfelt thank you to all of you who made donations and sent condolences in memory of Mr. Greer….It meant so much to Lisa….She was quite overwhelmed!!)…..Then, Jill’s dad was rushed to the hospital in the middle of the night…we were all told he had a heart attack….After about a week in patient, we find out that maybe it wasn’t a heart attack…diagnosis still pending…..In the middle of all this, Jill is planning her wedding along with a wedding for her daughter-in-law to be….LeAnna’s (daughter-in-law) wedding was being held on my front porch with the reception following, in my back yard…..Me Fine hosted a barbeque at my house in honor of Jill and Rob…..and then (!), we hosted Jill’s reception….all in about 3 weeks time…..Everyone was involved, so needless to say, our time was stretched between weddings, parties and Me Fine…..It all turned out beautifully and somehow, without any major catastrophes….(The rain at the reception was a little tricky, but not so bad that anything was ruined….)….it’s amazing what can be accomplished with a few good friends…..!!!!

Oh, during all that, I decide to have some “elective” surgery…scheduling 3 days after all the festivities are complete…What was I thinking???? It took me about a week to recover to the point I was mobile….I am now 11 days post op and nearly back to 100 percent….I still have minor limitations, but nothing that slows me down……

In the middle of all the chaos, Me Fine is hanging on by the skin of our teeth….Lisa Valentino establishes the Triangle Board of Advisors….The BOA is a group of highly successful individuals with diverse business backgrounds and experience who have pledged their time and talents to successfully continue the mission of Me Fine….We are all so excited that this group has committed themselves to a grass roots organization such as us…..WE think we have worked hard enough and accomplished enough to be worthy…sometimes its just hard to convince others of our dedication…..We feel blessed beyond words to have even a minute of their time…..They have accomplished so much already and I can see huge things on the horizon…..

ALSO, LV has kicked off Smiling for the Kids and Selling for the Kids…..The “Smiling” program is through area dentists who donate a portion of the cost of a treatment….We are getting more and more interest! “Selling” works through businesses that sell products or services….A portion of their sales is donated to us…..Home Town Realty of Clayton donates upwards of $5 per TRANSACTION….We have received a much needed check from them each month since January!!!! Kudos to HTR for making a profound difference in the life of another human being…..

LV has also initiated the $1/day Campaign….We have people from all over who are pledging $1 per day to Me Fine to be used for our kids at Duke and UNC Children’s Hospitals…..and to continue our promise to be good stewards of the money entrusted to us….all these donations are drafted and are deposited directing into our family assistance account and used solely for the purpose intended…….We are all very proud of that….and extremely grateful for those of you who have signed up……YOU are instrumental in helping us make a difference for these families….

Our signature fundraising event is in the planning stages…..The 2nd Annual Southern Ladies Purse Gala will be held September 16 at the elegant Embassy Suites in Cary…..We are looking for unique and designer purses from around the world to be auctioned at the event…..Our first event was so successful, we have had to plan the upcoming gala in a larger venue….You wanna come??? Email Lisa Valentino at mefinedevelop@aol.com …..We have a female auctioneer who is a blast….door prizes, great food and much more….Its fun to just hang out with all these great women and battle with them over that particular purse!!!!

On another note…the stores are still doing great….Hope Shop in Princeton is fabulous….and Second Hope on Hwy 70 is holding its own…..I can tell we’ve all been way too busy…but we’re back now and those of you from the area should really see some big changes in the near future…..We’re looking vendors and consignment merchandise….(Our weekly/monthly rate schedule is more than reasonable!) We want to expand into a flea/farmers market….The store has great visability from 70 and with all the beach traffic headed east….I think we can offer a great service to the community and the travelers…..If you have any ideas to promote our Me Fine Market concept, please pass it on…..I’d love to offer a wide array of items, foods, crafts, etc….”something for everyone!!!”……(We are also DESPERATE for your gently used houseware items, FURNITURE, and toys!!!!…These are BIG SALE items and they are gone as soon as we put them in stock…..Please help us by cleaning out your attics and storage rooms!!!! We NEED these items…..!!!)

We have FINALLY finished and SOLD our Hope House!!!!! Thanks to Pearce Brothers Construction, Narron Homes, and many, many others, Hope House turned out to be a beautiful home....A young, newly married couple purchased it and now....(!)....we actually have money....It won't last long because we have been so far behind and families are coming in so quickly.....but thank GOD we are okay today.....We can worry about tomorrow at another time.....I can never repay all the genuinely caring people in our community who made this project possible...It is simply amazing!!!!!

Now, with all this going on, I know you’re wondering if we’ve even had time to assist a family…..Ahhhh???? Yeah!!!!!!! Lisa Brown certainly takes her job personally….even with all that’s happened….she has still found ample time to assist with our active families, several new families…and in her spare time, she saved TWO houses from foreclosure…..with Lisa Valentino’s help and a local car dealer, she provided a car for a family….all this just within the past month…..Man!!! Me Fine is AWESOME….Thanks to all of you who support us…and THANK GOD for His obvious compassion towards our efforts……

As for the personal stuff….Well, there really hasn’t been much time for anything personal….Thank goodness that everyone I work with is among my closest friends….We’ve all spent so much time together lately with work and helping Jill with the wedding stuff….We’ve had lots of parties, events, time to take a breath and just hang out….I was beginning to feel my age…having turned forty last December, well, I think I was starting to plan for retirement….Over the past couple of months, I’ve decided I’ve only just begun….I am trying to get out of my safe little box and do things that I wouldn’t normally do….Things with me and Folden are good…so much better than last year….He’s finding his way and we’ve been doing a lot of couple stuff….It feels almost like we’ve just met…its been great…..I’ve made more time to hang out with my friends…..I still say, “Women need women”….I feel better about life, marriage, children, etc., after a couple of demand-free hours with my ya yas!!! Life just simply isn’t that hard to figure out…..It just needs to be filled with variety….

I ALWAYS listen to Bob and the Showgram in the mornings…on G105.…a Raleigh radio station….I’ve been an avid listener for close to 20 years….Recently, the primary morning host was suddenly off the show….I heard it was a medical problem….but I wondered since he is about my age…..On Friday, he returned to announce he had been diagnosed with a brain tumor….I didn’t catch all the details…cancerous, non cancerous, life threatening, etc…..but I did catch one part of his dialogue where he talked about his state of mind…..and the life changing decisions that come with this type of news……Bob is notorious for being a narrow minded, out spoken jerk at times….He’ll say stuff that shouldn’t be said out loud and argue to the death from the heights of his “soap box”….He has a wife he probably don’t deserve and two daughters around the same age as Wilson and Anna Gaites…..He’s addicting…..! In his accounts, he talked about his symptoms, his wife’s insistence that he see a doctor and then diagnosis….He said he had a pity party for about 24 hrs….and then decided to “turn it completely over to God”…..AMAZING! I can remember that very moment in our own journey with Folden…..Bob said he had always worried…worried about work, life, etc….but since his experience, he was happier than he had ever been…..Lisa V and I were talking about Bob and his ordeal…Lisa commented, “I wonder why it always seems to take something like this to make people realize what’s really important???” I’m guilty, just like most people…but living through Folden’s diagnosis, treatment and death….well, it sure made me see things differently….It is a shame that we don’t enjoy life like we should until something happens to make us see how fragile it really is….

Enough soap boxing…..Just please try to let go of some of that weight and just enjoy life….Spend time with your friends…whether you think you have time or not….It will become addicting…..

Please continue to remember our kids in treatment and their families….As we branch out and cover other units, we find more and more reasons to practice faith…..All my love, ~L

Friday, March 16, 2007 1:05 PM CDT

*****
We would like to ask that everyone pray for our little friend, Noelle. They are here from Wisconsin and sure could use some of our "Southern-style" friendship and prayers. This family has been through so much..please sign their guestbook and add them to your prayer lists! www.caringbridge.org/wi/noelle
Thanks! LB

Hi! Lisa B. updating for Lori.

I want to start by thanking everyone who supported the families of Maci Donleycott and Rebecca Simpson. I am sure that your prayers and emails helped the families through their very difficult times. Both services were beautiful….real testimonies to the impact these two young women had on all of us.

I have been busy with quite a few new families. One, in particular, really has been pulling on my heartstrings. We were contacted by a care coordinator at UNC (a lady who has been there forever and who I have been working with since I started with Me Fine). She called to tell me about a new family she wondered if Me Fine could assist. They are Hispanic and Mom and Dad speak no English. They told her what they needed was a portable baby swing/carrier for the child. I went to the hospital and visited with the Mom and baby, one of the most beautiful I have ever seen. No one had told me what was wrong with the baby and he looked so healthy that I could not figure it out, either. I took the swing, Mom was so appreciative. I gave her our phone number and had her call Julia, our Spanish-speaking Associate who works at Second Hope. The Mom called Julia and we found that she needed a few more baby items. I sent out a mass email and was loaded up with stuff for the baby. As Julia and I drove to Raleigh to take all the items to them, I asked Julia to please find out what was wrong with the baby. She said, “Oh, Miss Lisa, the babysitter SHOOK the baby.” Well, that was almost all I could take…day in and day out, I see families and their doctors fighting diseases that have no cure and someone intentionally hurt this precious baby…I just wanted to cry. We went on in the apartment to take all of the items we had collected and the Mom was so excited. She kept saying “thank you” over and over. The baby, 7 months old, was not injured as bad as what you see on TV. He has more movement on one side than the other, bruised corneas and may have to have a shunt, however, he is active and alert.

A few days after our visit, the coordinator from UNC called about another family. After we talked about them, I began to tell her about our visit. I said, “I was amazed by all the stuff that was donated…we had a garbage bag full of new clothing, with tags; 4 or 5 packs of diapers, wipes, etc. She said, “Lisa, I have to say that it might sound like a minor miracle to you, but it is what we have come to expect from Me Fine.” Wow, coming from her, that really made me feel good. I know we have pulled off some “biggies” but I stay so immersed in it all that I often forget what we have done and my thoughts go to "How will I help the next family..."

We continue to help. In February we assisted three families with funeral expenses, helped others with electric bills, phone bills, mortgage payments. We were able to provide eight families with gas and/or grocery cards, I sent phone cards to the social workers at both hospitals, we provided groceries, diapers and wipes to other families. Thank you to everyone who donated items or money to help us help these families.

It seems that we are always worried about money and where the next donation is coming from. Lisa V. is working hard to take away this worry. She has been very successful in working with Patterson Dental to get our Smiling for the Kids program out to more dentists. She has started a similar program called, “Selling for the Kids,” that merchants can get involved in, too. “Selling for the Kids” lets merchants give back by donating a portion of their proceeds from the sale of items or services back to Me Fine. Our flagship business, HomeTowne Realty of Clayton, has been donating every month since the beginning of the year! Thanks, Barry!! If you would like to join in, please contact Lisa V. at 418-4359 to sign up. She will be glad to visit your business and give her presentation to your associates. If you don’t own a business, you can help out by frequenting those businesses who do support Me Fine or by seeing Dr. Folden Lee in Clayton and get fitted for a whitening kit through Smiling for the Kids.

Thank you for checking in. Please continue to pray for Me Fine and "our" families.

Sunday, February 25, 2007 8:49 AM CST

Well....I just have no words.

We lost a true angel over the weekend. God Speed, Rebecca.

www.caringbridge.org/nc/rebecca

Tuesday, February 13, 2007 3:58 AM CST

Sometimes, its just all too much. When I take time to actually sit back and evaluate myself and my life…..I don’t always understand where I am…….I realize, lately, I’m on emotional overload…creating chaos and diversions to fill the enormous gaps in my soul……trying to shed some light into the dark recesses in my mind…..I look around and see what I’ve done……the madness that I choose to allow, just to give myself something to focus on….diverting my attention away from the emptiness……working so hard to somehow make sense of it all……

We’ve been working on our addition for much too long now, and I have made every effort to keep things orderly and simple….but in construction, I’m not sure that’s possible…..Things at the store are a mess….no one knows where anything is….we are all working in what seems like a garbage bag full of what use to be “our stuff”……It feels like someone has shaken it all up and dumped it out….”Here, make some sense out of this”……………Now that its all coming to a close, I almost feel lost…..What will I use to stress me out just enough to keep my attention away from the hollowness…..???? “Hey, I know!!! Let’s open another store….!!!” “Let’s move things around!” Anything to create enough chaos so that I won’t notice what’s inside…..Madness, I know…….

A couple of my friends and I spent the weekend at a local hotel, near the mall, for Wilson’s 10th birthday…..It was nice to just sit around and listen to the giggles of our girls as they talked about boys and makeup and school……”That’s awesome……..oh, he’s cute…..How are you doing in math?”…………….”How old do I have to be to shave my legs………..can I have a padded bra!!!” The other moms and I also had time to just sit around and talk about life, husbands, kids…..Just girl talk……Like other good friends, we talk about what’s wrong, what’s right….what we want out of life…..what we think we have……and what we think we’re missing…..Life is just too much sometimes…..I feel a restless need to just run away from the routine…..leave it all behind for a few days and check out of mommy/wife land and escape to a place where I am no one…..no commitment, no responsibility….no expectations…….I would probably give it a try, but I don’t know where that place is………..Ahhh, but to think about it from time to time……

The past couple of weeks have been especially tough….I think we all get into such a set course…sometimes we don’t even notice anything else…….As I sit here and think about it, I know its been building for a while…..I feel myself going through the motions, but my heart is not in anything I am doing…..I can’t decide what is wrong with me….where it all came from…….all these feelings…….Maybe its just like I said before…all the dust is settling and I can actually think about what I’m doing and I’m afraid the simple life will not provide the aggravation I require to stay sane…….

As I continue on my “me evaluation”….I get an emotional call from Lisa…..Lisa is not only the associate director for Me Fine….but she is one of my closest friends….We’ve been friends since our girls were just 2 and 3.….We were the “dance moms”………We met at the studio each week to watch our girls during dance class…..and a friendship developed from there…….Week after week, we talked about mom stuff…..friend stuff and life stuff…….It was a coincidental bond…..During those days, I didn’t realize how much these new friends would come to mean to me……From those conversations, I learned what normal is….I learned to lighten up on my kids and myself…..We were all able to vent, confide and basically wrap ourselves around new thoughts that each of the personalities brought to the table……..Knowing them and having that kind of time to just kick back and be honest about myself, well…it made a lot of difference for me during the journey to come…..Funny how God provides things we don’t even know we need……

Lisa called today to tell me that our dear sweet Maci was not doing well…..I could tell from the very tone of her voice….its wasn’t a bump or a set back….but an extremely serious situation……….Maci has been one of our hope kids for so long……..Lisa develops a special relationship with each of her families….getting to know them as much as they will allow her……Favorite foods, favorite toys, family components……anything a family wants to share, Lisa is soaking it all up….trying to not only represent Me Fine as our Family Assistance Coordinator, but as Lisa Brown, a genuinely compassionate human being who actually cares about the family……She shares a lot about the families with the rest of us….Maci and her family are local….we were contacted way back by Maci’s grandfather…..hoping that as a nonprofit, we could provide some resources for a fundraiser being held in Maci’s honor….to help the family with expenses associated with treatment……..We have followed this family since…….and Maci was doing GREAT! She was one of the children who gave all the others hope….She had made it through chemo, then breezed through transplant and was back home simply living………She and her mother came into the store several weeks ago….Maci was so excited to show us that she could put her hair behind her ears!!! She had been so long without hair….and now, it could be pushed behind her ears like the big girls……Maci had all the markings of a leukemia patient….puffy cheeks, full stomach, skinny legs….but she was full of fire…..and I remember saying to myself, “Thank God for Maci”…..”God really doesn’t take them all!!!” Shortly after that visit….Maci developed a common illness, and medically, the doctors could not control both sets of problems……Lisa has been keeping me updated through entries in the family’s website…personal contact with the family and their friends….When she called tonight, I knew it was not good…….Oddly, several others called me throughout the course of the afternoon…………I had just picked the girls up from school and came home to start dinner……..I was straightening things up a bit…..pouring things in pots and with each movement, I thought, “How irreverent!” Maci is fighting for breath, her mother and father are certainly in pieces and I’m making spaghetti???? What???????????? Life should be at a standstill…. Shortly afterwards, Lisa called again from the hospital….”It is almost over….” I decided to head to Chapel Hill, just for support……I don’t do that very often because I feel like sometimes I cast a dark cloud over the situation……Kinda like reality walking in the door…..but I was worried about Lisa….she feels each set back and end of life so deeply….and I knew she needed her friend, just like I’ve needed mine so many times……..

Chapel Hill seems to have changed a lot over the past few years……as always, in my haste to get to the hospital, I got lost……nothing looked familiar…..but I finally found the parking deck and headed to 2nd floor……I didn’t even have to look at the map…..I remember the smells…..the sounds…….Good Lord!!! I ran up to the second floor and immediately found Lisa and Cindi Baker….Cindi is another friend from the “neighborhood”….She also has a child in treatment who has responded quite well……We all sat outside the PICU Waiting room and talked…..sort of casually, but our minds were solely with Maci’s parents….holding their hands with our hearts as intensely as we could……About an hour later, the word came through, Maci had earned her wings……..

Bonnie, Maci’s mother, came into the waiting area….I had decided to step back and wait outside in the hall……That was a time for her and her family…..I just wanted to be there….for her and for Lisa……

Eventually, Bonnie saw me and came over and just hugged me……I recognized her hollow look….I’ve seen it too many times before……Its something between unbelievable shock and indescribable pain……or rather a combination of the two……I hugged her………..Even with all the experience I have, I found no comforting words….nothing…….absolutely nothing to say that would make sense of what was happening…..I’ve heard all the condolences possible….you know, the stuff about God’s divine plan, purpose, better place……I believe every bit of it with all my heart….but none of it matters now….not in that moment……I simply said, “You were chosen to be Maci’s mother….and you did a great job….”…….Bonnie has been a rock…..and I’m certain Maci knows how hard she tried to save her……but now Maci has no pain, no fear…….and her cancer is finally gone from her body…….She is probably soaring through heaven, hair in the wind……giggling with all the others who came before her…….It must be an amazing experience to see heaven…..Maci’s family, well, hopefully the thought of her being finally free will sustain them……Probably not, but at least, it’s a nice thought……..

Lisa and I decided to head out and allow Maci’s family time without outsiders…….I kissed Bonnie on the cheek and said, “we’re still here…”….She replied quietly…..”I know”……..That says a lot about who we are and how hard we try. I wish our efforts could make the outcome different…..

I left the hospital and searched the parking deck for my car…..I couldn’t remember where I parked and each of the levels look alike……I didn’t even care…..The hunt for a white suburban was just a small diversion….something to occupy my mind, if only briefly………….Whatever it takes, I guess.

Tomorrow is another day…….Seems like this day didn’t turn out so well…..I suppose Maci’s parents will begin the same journey as so many of us are on…..trying to find any reason, any situation to fill the gaping void inside……So far, I haven’t found anything long term….just momentary confusion and chaos to take up enough energy to get through one more minute……..just one minute……I have learned not to worry about the next one until it gets here.

Please pray that Miss Maci landed safely…….pray for Bonnie and Patrick Donleycott…..Pray for peace and strength for them and their families….…….I find those are the two most important assets……..They will not find understanding….they will not make sense of it all…..and they have certainly developed ample courage over the past couple of years……I guess all that can be hoped for is peace within…..and the strength to make it through a day without being able to wrap their arms around their precious Maci…..it’s a sad, sad day….

Update January 25, 2007 (by Lisa B)

*********Please pray for Maci*******
www.caringbridge.org/nc/maci
Maci is experiencing some illness and Graft vs. Host and needs our prayers.

Also, please remember the Rasmussen family in your prayers www.caringbridge.org/in/babydonovan as they prepare for Donovan's final services this weekend!

***************************************

Wow….Is it January already? December was a busy month….full of joy and sadness…..I wanted it to be a great Christmas…..the best it could be….I may have over done it a bit with the girls’ gifts…oh, and Santa was very generous…..We hosted family and friends every night for a week….straight. All very tiring….but so wonderful to be surrounded by family, friends, and happiness……Santa even left special, North Pole, snow dust foot prints all through our house…(www.pranksplace.com). Wilson and Anna Gaites, nearing 10 and 9, are at the point of second guessing Santa’s existence. Thankfully, Santa didn’t wipe his feet…..What a blessing to see my girls so amazed….Ahhhh, the joy of being a kid……I even broke out the video camera…..I have not taken pictures or videoed much of anything for the past couple of years….knowing in my heart there would always be a face missing….I just didn’t want to deal with the reality……but I set up the camera and caught it all…..each memory ready to look at anytime I choose.

I guess I just kept thinking about something GeeRose said…..”I may not even be here next year…..”…….How true. Each day of our lives should be lived to the fullest. I’ve always thought that meant to take up sky diving or try something new…..but now that I think about it…..that’s not necessarily what it means at all…..We all have to do things each day that we don’t particularly want to do…..pay bills, feed the dog, do laundry….In living each day to the fullest, we should find happiness and contentment in our routine….weed out the things that are useless…..mend broken relationships, enjoy the sunset, take a break…..we shouldn’t push ourselves so hard that we don’t have time to notice the smiles, the simple pleasures…..really living a life does not require us to jump out of a plane or visit a foreign country…..its just enjoying the life we have as best we can….no regrets.

One of my biggest Christmas projects this year was the gift we gave GeeRose and Ampa…..Tammy, my sister-in-law, and I put some of our videos of the kids together and had a DVD made of them through the years….sort of like a video collage…..The video highlighted some of the important moments from birth through now…..It was all put to music…. “Forever Young”….a guitar instrumental and a John Mayer song…Animation was added along with a few other special effects…….When I saw the preview, I was breathless………literally. I showed it to everyone at Me Fine….we were all in tears…..All the wonderful pictures of Aspyn, Alexa, Wilson, Anna Gaites and Folden……being born, first steps…..funny moments….Christmases, birthdays…..snow days…..silly “performances”…….Oh my God….I thought I would die……..Really. My heart was so happy and so broken in the same moment….We “presented” it to Rose and FW on Christmas day. All of us watched it together…..It was a huge hit. One thing that really hit me…..As I watched the video over and over the few weeks before Christmas….I realized what a great time I’ve had…..I’ve been a decent mom, even though I feel like I miss something everyday…..I’ve been a good wife……my husband may say that’s questionable on some days…..I’ve been a decent friend….maybe a little slack here and there……but all in all, I’ve been better than I give myself credit for…..I watched my kids laugh, enjoying priceless moments….dancing around, completely happy…..I watched it over and over until I even started remembering the actual moments when those clips were shot…..I could remember what I was thinking….what I was doing….and what I thought I needed to be doing……I can remember Folden and me talking so much about the future…..When the girls get older, we’ll do this….When we get this paid off, we’ll do that……Next year, we’ll be able to accomplish this….How stupid we were….Watching the video, I realized how priceless those beautiful moments were…..and how I overlooked some of them waiting for a more perfect moment….Man, to be able to live in those moments one more time….I have finally come to the conclusion that the perfect moment is now…..I may not be here for the next one…..I may never get my house paid for, my Christmas balance down to zero or have enough money to buy everything I want……….Its okay…..The perfect moment is now…….right now. Should you be interested in a similar gift, contact Julie at admin@jcdvddesigns.com….She can use video clips or pictures. She did a dvd from pictures for Lisa Valentino….It was beautiful…….Her husband with his father….and then with his sons…..The song was “In My Father’s Eyes”…..Amazing. We all miss so much by trying to live up to some expectation. Life is simple….it really is. Its our own fault for trying to complicate it.

Soap box…yeah, I know.

Thank you so much for all of you who aided our families and children with the wonderful Christmas and Hanukkah gifts. Over 25 families had a wonderful holiday because so many of you cared. I can’t thank you enough. Four of those families lost children during what should have been such a happy time. I hope you will continue to remember the families who are continuing their journeys and those families whose journeys have taken an alternate course.

Stop by and see us over at Me Fine…..We’re having a Tupperware fundraiser….Please place an order….certainly everyone can use some Tupperware….PLEASE send us your old cell phones……and if you happen to think of businesses who might consider sending Hope Shops closeouts, discontinued items and overstocks….Please give us a call….we can schedule pickups…..We still need furniture and houseware items most of all….If you or a friend is thinking about redecorating…..do it now and send us your old stuff………..

Have a great week…………and try to enjoy the moment that you’re in….it is by far the most important one. ~L

Wednesday, December 27, 2006 10:20 PM CST

Dear Foldie......Happy Birthday.....Just 5 short years ago, I knew my life was complete....I was so happy just to hold you.....The smell of your little head, your precious dimples and eyes as blue as the sky......I miss you so much.......I'm sure you already know that. I pray your birthday is wonderful.....I keep picturing the angels all gathered around singing "Happy Birthday".....your birthday cake made of clouds, lined with 5 candles beautifully lit with the glow of a million stars.........My heart hurts so much....and I feel like I'm always fighting back tears.....but with all the heartache, all the pain in my soul....I wouldn't trade any of it......I wouldn't change a thing.....Everything we've been through was worth it...just to know you were mine.....How blessed we are to have had you even if only for a second.......I'll see you again.....and I will hold you tight in my heart for the rest of my life.....

Love,
mommeeeeee

Sunday, December 17, 2006 11:39 AM CST

This time of year is so bittersweet for me…..I’m excited about it being Christmas….yet, sad for all that has been lost…..I look back and try to remember what made my Christmases special….hoping that I am making wonderful memories for my own family. You know, there are very few Christmas gifts that stand out to me….but I do remember my dad letting me string lights all over the house….I’m sure our neighbors were wondering about us!!! As a kid, I thought our house was the most beautiful around. I remember watching the gifts multiply under the tree….I shook each one, crazy with anticipation……I remember going to my grandmother’s house with all my aunts, uncles and cousins…..the smells from the food, the sounds of all the chatter…..So much has changed…..My family has grown so much….all my cousins are married which brings other families’ schedules into the picture…My grandparents are no longer living, and someone else lives in their home…..the place where most of my Christmas memories are centered……....Our Christmases have changed, but fortunately, most of my family choose to continue the traditions set by my grandparents…..

Memories of my father sneak into my head at least everyday…..but this time of year, I feel flooded with visions of him…..the things he loved, the way he saw the world…..My dad appreciated the very simplest things in life…..lots of people around the table, hot coffee, good weather…..and a decent joke…..I think, as a child and teenager, I didn’t appreciate daddy’s way of thinking…..There was so much in the world that needed to be explored…..so much more than what his little world had to offer……….Now, as an adult, I wish I had been given more time with him….time to understand his joys….his uncomplicated happiness……

Folden and I are at the beach enjoying a little down time…..I’m finishing my shopping and he is out on the water…….I’ve been trying to get everything in order for the upcoming week….I want everything to be done so I can enjoy what is important……I was sitting here yesterday morning, doing a little internet shopping…..The movie, “50 First Dates” was on…….I caught bits and pieces throughout…..enough to get the premise….Drew Barrymore has a head injury and each day she wakes up, her mind only remembers her life up to the point of the accident…..She has to start every day with catching up on her life since then……..At the end, she wakes up and realizes she’s happily married with a child……Husband and daughter have to be reintroduced to her daily……..When my dad was sick, his condition erased his memory for a while……He was taken back to when my brother and I were small…..My mom had to tell him I was grown with 3 children…..The joy of finding out he had grandchildren was so apparent. Just like the character in the movie, he lit up when his current life was laid out for him……What a peaceful thought………………..I wonder if I went to sleep tonight and woke up tomorrow with 10 years of my life erased…..how would I feel when my life was laid out for me……..??? In the last ten years, I’ve been married, had 3 children, moved to my home in Princeton, lost my father, lost my son…..made new friends….and turned 40…….I just wonder if the gradual transition was taken out….and my whole life was put in front of me, all at one time, what would I think….how would I react…..??? Would I be happy with my decisions…..??? I will give that more thought in the new year…..Maybe that will be my resolution……to make sure I am fulfilling my purpose……not wasting time on unimportant stuff…fully appreciating simple pleasures…becoming an exceptional mother by being intuitive to my children….a firm parent and a good listener. Whew, now that I think about it, there’s a lot of work to be done…..As women, we all wear lots of hats…..mother, wife, friend, daughter…..I just want to give my life my best shot…..being the best person I can be for myself and those around me. Right now, I’m going to focus on Christmas…..I want it to be the best ever…..I have bought the girls waaaaay too much stuff……I know that’s not what its about…..So, I am trying to instill in them the real meaning…..but I don’t want them to realize it all just during the holidays….I want it to carry over into the new year and throughout their lives…..I want them to understand Daddy’s love of simple things, Mom’s open mindedness and independent nature, GeeRose’s compassion for others and Ampa’s strong will…….I want them to add any good stuff from me and Folden,….and mix it all together to shape who they will become……I want them to have strong minds and soft hearts……I want them to feel deserving of their blessings and share with others as they feel directed…………..I want them to be good people…..That is my biggest gift.

Now is a busy time of year for Me Fine….Lisa is busy organizing holiday gifts for about 30 families…..isn’t that awesome!….Most are being contributed by generous businesses, groups and even individuals….We’re organizing so many new fundraising opportunities….(I hope you’re collecting all your old cell phones)……Everyone seems a little strung out from all that has to be done…..We’ll have office space pretty soon….and the thrift store on 70 will be expanding… Hope House is almost finished and ready to sale…..The new year offers so much for us……..Just a little side note…..for those of you who have contributed time or money to our cause……We just received some of our preliminary financial reports……through October 31st, we have provided over $60,000 directly to families with children in treatment….TWICE what is required based on our revenue!!! I am so proud of that!!!! That doesn’t even include the assistance that has been provided directly from others….such as gift card donations, (gas, food and clothing), provisions, services, etc…….And we still have numbers from November and December pending!!! Praise God!!! When I look back over Lisa’s assistance reports….I wonder how $60,000 produced so much……..I would have guessed so much more than that……but Me Fine is like the story in the Bible of the bread and fish…….So little went such a long way……..certainly divine intervention……….Now that we have so many families depending on us, and many more on the way who have been given no other financial options…I can only hope that our resources continue to stretch….and God will continue to provide us with whatever is needed…..Here’s to FAITH!

I hope your holidays are simply blessed…..I pray you will enjoy the moment at hand and make it the best ever…..Thank you for another great ME FINE year……Stay tuned for our adventures in 2007.…

All my love, ~L

Sunday, December 3, 2006 9:22 PM CST

Hi Everyone,

Lisa B. updating at Lori's request. In explanation, as Associate Director of Me Fine Foundation, I am asked to submit a weekly report about what is going on at Me Fine. This week's report was a little more personal and emotional than normal and Lori asked me if I would share it with you!

Sunday, December 3rd

Today, I am on “emotional overload.” Judy (Gossett), our best volunteer, and I did some visiting. We started out by stopping by a lady’s house in Raleigh. She has a huge party every year and the “entrance fee” is a new toy. Then all the toys get donated to different local groups and Toys for Tots. Last year she heard about Me Fine, called us and let us pick first from the toys. This year was the same. And, my goodness, all the toys there were to pick from. Every time I would say, “I think we have enough, I don’t want to be greedy.” She would say, “Take some more…there are plenty for everyone!” She is so gracious. It made me think of how much people can do when they decide to help others!

From Raleigh, Judy and I drove to Durham. We took “Christmas” to one of our families. The little boy will turn two next Saturday…he has been sick since he was about 7 weeks old. He has been though two cord blood transplants and has relapsed. He is not expected to live. His Mom was so concerned about getting the Christmas decorations up to add some cheer and to accommodate his big brother who doesn’t really understand what is going on and wants decorations (blue and silver ones to be exact!). We had been promised a tree and ornaments on Friday but something happened and we didn't get them. Judy and I went to Michaels, talked the manager down to 100.00 for a 7.5 foot, pre-lit tree. Then we went to Target and with a donated gift card and some other funds, picked up ornaments, a Christmas book for the kids, a cookie making/decorating kit, an ornament making kit, and an outdoor snowman that blinks. I don’t think Santa himself could have gotten a more excited welcome. The baby was “signing” “Thank you” and his brother was tearing through the bags saying, “Look, LOOK, LOOK!!!” The kids were also very happy with the little pre-Christmas gifts that we took. The Mom asked me to come sit with her on the sofa so that we could get a picture of Mom, the boys and me. After the picture, I glanced over at her (we were sitting close together) and she was crying. As I hugged her, it was all I could do not to fall apart. All the thoughts that must have been running through her mind! As we left, the Grandmother, who was going to McDonalds to pick up a kids meal for big brother, stopped. With tears pouring down her face, she thanked me over and over again for bringing all the stuff. She said that the Mom had been so worried about Christmas and how much it meant for us to help. I told her that we were certainly the ones who were blessed to be able to help them during this time and that it was our pleasure. She drove off, still crying.

From Durham, we went to a small town outside of Burlington. Down a long, winding, dirt driveway we went to take a car (yes, God is GOOD…we got one) to a single mom with a baby with a very rare, probably deadly, condition. When we pulled up, she came out and rushed to the car…hugging me so tightly and thanking me and crying. She graciously invited us into her trailer. Inside was spotless and decorated for the holidays. She asked us to come into her bedroom to see the baby. She was beautiful! She has no muscle tone so, at almost a year, she still cannot lift her head but she can wave and smile. Her eyes are alert and clear. We visited for about an hour. At one point, Judy ran out to the car and the Mom and I were standing in her kitchen. I said, “You look so tired.” She burst into tears, “I am so tired and (reaching out to hug me again) and SO happy!”

Tonight when I got home, Charlie put the lights on our tree and the children started decorating it. Max, who is four, was so excited and wanted to hang all the ornaments (in the middle of the tree) by himself. As we started to unwrap more and more ornaments and decorations, I found many ornaments that were my Mother’s (she died 14 years ago) along with other items from my Grandparents (who are dead as well). I sat on the sofa, watching my wonderful, healthy children argue over the ornaments, holding a Santa that my Grandparents gave me when I was about two, tears streaming. I am truly blessed to have a beautiful family, good friends, and a job that affords me the luxury of being blessed by almost everyone I come in contact with….who could ask for more??

In a little bit of business…the stores are doing great, we are overwhelmed by the outpouring from the community with Christmas help and our fundraisers are successful. Ladies, please remember to call Iatria Spa in Cary to make your appointment for some pre-holiday pampering to benefit Me Fine (please call Lisa V. for more info 418-4359) and tell all of your friends about Lights on the Neuse ($2 of every adult ticket is donated to Me Fine).

Please continue to pray for Me Fine, our families and our continued success.

Thank you!

Lisa B.

Sunday, November 12, 2006 9:12 PM CST

Has it been long enough….I’m thinking maybe all of you are tired of hearing from me by now…..But, nevertheless, here I am again…..Clearing my head and writing down my thoughts and my view of the world…..Its been a crazy month….lot’s going on….We all remain overwhelmed by our work load…..As Me Fine grows, it seems our desks get more cluttered and the stacks of “to dos” continue to mount….Its all great, though….It wouldn’t be so good to have nothing to do……

Halloween was fun…..Lisa B and her family, my family and one of Anna Gaites’ friends all did our usual tour of Glen Laurel….a community in Clayton where we used to live…..The kids had a great time, I think….It was fun hanging out with Lisa and Charlie……The sounds from the kids’ obvious excitement was priceless…..We went by our old house…near the end of the evening…..It took my breath…..For several minutes, I just stood there….Looking at that place that I once called home…..I could still see my kids on their Barbie jeeps and power wheels 4 wheelers…..I could see the steps where they sat for their Christmas pictures……the sloping sidewalk, the source of many scraped knees….I could hear Anna Gaites calling “Wulset” and screaming for mommy to come get her “deep” out of the bushes…..I could hear the laughter from the yearly slumber parties and many birthday parties….always a birthday party in February and March and the “Dance Class” slumber party in September….I swear I could still see the remnants of silly string and bubble soap…..I thought about the day I took Folden home from the hospital…..brand new outfit….He wet it within the first 30 seconds after we walked in the door…..I can remember his place at the end of the bar where he licked the peanut butter off his morning bagel….Through the window, I could see the kitchen sink….Folden’s favorite spot while I cooked dinner……..I remember all the craziness of having 2 little girls, only months apart….The long, sleepless nights…..the endless days….2 in diapers, 2 with bottles, one with a handful of pacifiers and one with a handful of stuffed animals…..God, it was hard to walk away….Fortunately, the new owners weren’t home….I could have stood there all night long….Fortunately, as the tears began to roll down my cheeks, I was called to leave……It was hard to pull myself away from what once was…..my perfect life.

Last week was my birthday…..I am officially 40. Folden and a few of my friends organized a “surprise” birthday party at my favorite restaurant in Clayton….Main Steak…..It was wonderful….Many of the people that I love, all in one room….just for me!!! Folden is terrible with keeping secrets, so I had figured it out several weeks prior…but it didn’t take away from the climate of having everyone there to celebrate with!!! Thanks Guys!!! You’re the best!!!

All week, many of us have been working hard in the downtown Princeton store….restocking, reorganizing….etc….We have stayed late almost every night trying to have the store in order before the Princeton Veterans’ Day Parade on Saturday….Friday night, Wilson and I were there particularly late….We were finishing some of the signage and both of us were extremely tired and hungry….We left and went to Andy’s to eat…..We talked a lot, mostly girl stuff….laughed a little and simply pigged out!!! As we went to the register to pay, the cashier said, “The couple that was sitting behind you paid for your dinner”…..neither Wilson nor I knew them…..It was just a nice gesture from a stranger……..How sweet. I told Wilson to remember how she felt at that moment…That’s what other people feel like when we do nice things for them….She and I made a pact to return the favor and do the same for another couple next time we ate out…….The next night, Folden and Anna Gaites decided to go to the beach…Wilson and I stayed home to take care of a few prior obligations…..We ended up at a different Andy’s…..When we went to check out, Wilson picked a young couple and we paid for their dinner…..We told the cashier our story and asked her not to tell the couple it was us….We left quickly but couldn’t help but see what happened….From the car, we could see the same disbelief on their faces as was probably on ours the night before….We could tell the wife said “wow!!!” Wilson said, “Mommy!!! This feels GREAT!!!!”….Oh man, I just loved it…..something so small can give us so much pleasure……Hopefully, the couple will keep it going and do it for someone else…..

Another little story that I have to share……..Jill, our newest staff member, was running the store one day this week……….A lady came in and asked if we had a wheel chair…not the conventional type but one for a child with a severe handicap….She was raising her grandson who had cerebral palsy and had been using a stroller that he had long ago outgrown….She was just asking on a whim, sure we had nothing even similar to what she needed….(She wasn’t familiar with Me Fine….she thought we were just a thrift store….for profit)…..Anyway, Jill told her about a wheel chair we had that had been custom built for a special young girl from our area….Her parents had donated her equipment to us shortly after she earned her wings….and we had been keeping it all safe and sound, just waiting for the right person to need it……Jill brings out the chair, perfect for the little fellow….The grandmother just couldn’t believe that we would have something like that in stock…..Just as quickly as the excitement covered her face, she seemed deflated and asked almost hesitantly….”How much?”…..Jill told her about our mission and said, “this is what we do”….Its yours…no charge……The lady became very emotional and could not speak….obviously stunned at Jill’s offer….apparently overwhelmed at the crippling costs associated with her grandson’s condition…..……Jill gently said again…”Its okay, its what we do….”….Jill loaded up the wheel chair and sent her on her way….Grandmother never was able to say anything…..The next day, the grandfather called and asked to speak to Jill…..He wanted to thank her on his family’s behalf…He said the grandmother would eventually call, but at this point, she still couldn’t express her appreciation without getting upset….Jill said again, “its what we do…thank you for the opportunity….”…………Today, I met a very special little boy named Lars….He came in with his grandmother and grandfather….clearly the apple of their eyes….He simply wanted to know…”Where’s Jill?”…….I talked to him awhile and he said thank you very much…”I’ll be back…I want Jill to see me in my new chair”….!!!! I know Jill will feel even more blessed than anyone else, just by seeing the smile on this little boy’s face…..Talk about Priceless!!!!

Whew…..See why I like to stay so close to Me Fine….Its a miracle nearly everyday!!!!!

Lisa B and I talked a lot after my last update……She has a way of getting in my face a bit, especially when I get into wallow mode……She spent a lot of time reminding me that we ARE different…..Not because WE think so…simply because we are…….We don’t have caps or conditions….we don’t have forms, documents or applications…..We don’t follow guidelines….ask a lot of questions or invade anyone’s privacy…..We don’t do this for the money, personal gain or ego…..You will probably never see Me Fine on a resume….(no one has any intention of leaving)….We don’t try to garner sympathy by flashing sick kids’ pictures around….We don’t tell you that your money will save a kids’ life…because it won’t….We are in the HOPE business….and because we are here, because we do what we do…..because we care, tonight, someone has hope that wouldn’t have otherwise…….I do have a lot of passion for our cause….more than someone might for another cause? I don’t know…..and I guess in the big picture, it really doesn’t matter….This is what I was called to do…..and I will carry it out, with the help of a few amazing friends…..The Me Fine branches have reached around the world…..We have directly helped nearly 200 families in two short years…..many in spite of a negative balance…We have met at least half of these families and children….continuing a personal relationship with many……..Yeah, we are different…and our passion is warranted……There ARE a lot of good causes out there…..fortunately, its not a contest…..We WILL help everyone we can…regardless of the setbacks, disadvantages or our bank account balance…..We will ask for help from anyone willing….proving ourselves worthy as we go…..That’s about all I know…..I appreciate your continued support…..even when I’m in wallow mode!!!!

Have I left off anything….?

A few fundraisers…

Handmade purses available in our stores now through Christmas….Orders taken…custom embroidery available….

Handmade Christmas ornaments…..now through Christmas.

Custom embellished glassware….Hand painted….now through Christmas.

Place a Tupperware order through us….Me Fine receives 40.

Go to CafePress.com/mefine and order a Me Fine sweatshirt….Me Fine receives 50

Look for us in the Clayton, Smithfield and Princeton Parades…We will be asking for your spare change…..Bring a pocketful and see if you can hit the target!!! It should be fun!!!

Check out Lights on the Neuse…a Christmas Light show with many extras….and get your tickets for the Glen Laurel Christmas Tour of Homes….all in Clayton…..

We have a spa day scheduled in December….One of the top ten spas in the nation is opening on Sunday for Me Fine supporters…Proceeds go directly to us…..
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Call TODAY (870-1975) to schedule your spa service to assist Me Fine on Sunday, December 10th. Let's fill up all four locations and share the holiday spirit! Consider it a treat for yourself in preparation for the holidays while offering HOPE to others that will not get to be at home celebrating Christmas morning.

www.iatria.com

"Top 20 Spas in America", Launchpad Magazine

"Best Places to Work" in the Triangle

4 locations to Escape the Everyday.

Email Lisa Valentino, (mefinedevelop@aol.com) for more information....Maybe, I'll see ya there!!! We need to fill up the appt books……

Stop by Hope Shop in Princeton….Great new look….great new inventory....I think you’ll be impressed!!!! Ladies Pants, $3.00…tops and blouses, $3.00……Most are name brand, all in immaculate condition….No one will ever know they are from our Thrift Boutique, unless you decide to tell them!!!! We also carry a full line of men’s and children’s clothing….housewares, linens, furniture, toys…..about anything you could want…..all at a steal!!! And think about how many people your purchases could be helping……Please ask your local businesses to consider donating their overstocks and closeouts……

Oh!!! Please, please, please be collecting your old CELL phones…..I will have more on this in January….this one is HUGE!!!! I need all your old cell phones, your friends’ old cell phones…their friends’ old cell phones…etc…etc……I will even pay to have them shipped to a Me Fine location!!! Its that big!!!!!

Take care…..and I love you all!!!!!!!!!!!!!!!!!!!!!!! ~L

Saturday, October 21, 2006 11:14 PM CDT

Well….even I get in a slump……..Me Fine is going good…..and continues to be my source of strength….I still think about quitting from time to time…..I even thought about it a lot today…..The girls and I took a “day off” and went to the mall….I find myself not wanting to stray far from Me Fine grounds…..I’m at the thrift store most of the time….trying to think of anything I can to make it better….or I’m on the computer, following hunches or looking for all the possibilities out there……..Grants, loans, fundraisers, rules, ideas….on and on……But today, I just decided to go to the mall………Wilson, Anna Gaites and I went to Crabtree and ate at PF Changs…..It was great…..The server laughed at us because we ordered so much food….We just wanted to try EVERYTHING!!! Anna Gaites got the shivers, she said she was just soooo excited…..Priceless! We had planned to spend half our time on them, and half on me……I definitely need some new stuff…….but I hate shopping….We ended up doing their lists first…..Limited, Too…Claires…..Build-a-Bear…..Gypsy’s…..The Halloween Zone…..and a couple more tween type places…..By the time we finished all that….I was tired…plus, all the Chinese food was making me crave a long winter’s nap……..So, we left the mall before it was my turn to shop……….as always. It was okay though….We had a great time…..At Build-a-Bear, they have a “cancer bear”….I don’t know the real name…that’s what Wilson called it….Evidently, proceeds benefit peds cancer research or the like…..Anyway, I had seen a teen girl in one of the shops the girls chose…She was in a wheel chair, aqua sequin cap covering her bare head…..She had the “look”….dark circles, pasty skin…and a lost, hollowness in her eyes…….I couldn’t help but watch her….I just wanted to go up and hug her and say how proud I was that she is still able to fight the monster….but I didn’t….I just watched her….I wondered what her diagnosis was…..her prognosis….who is her doctor….did we know some of the same people……I’m sure she had no idea that we were “neighbors”, in a sense……I watched her mother as she put her choices on the counter……I wondered if her mother really had enough money to buy all that stuff or if she was thinking, “I’ll find a way to cover this later…..I just want her to be happy for the time she has left”…..I wondered if she had been told she was cured, and this was a shopping celebration…new clothes for her new life……??????? I just wondered what she had been through…..and how well she was doing…..Her face stuck with me…..Later, at Build-a-Bear….she was there…She had picked a fluffy white rabbit……floppy ears…..He was sitting with her in her chair as she helped the staff stuff the animals for the other children…..I watched as she introduced herself to each child….looking for strength to simply smile….She had a brilliant smile….but I could see behind it….She was very weak….determined not to give in or give up…..Cancer does that to you, I think…..There were several little boys running around….One walked right up to me….he was about 14 or 15 months old….Chocolate brown hair and huge blue eyes…..He held one of the sound things out and said “cow”……..I said, “what does the cow say?”….He smiled and said, “moooooooooo”…..and then ran over to show his mom…………Wilson and I both looked at each other….I could feel the tears coming….we had to keep moving…….

Even hours later, I still have the site of that girl in my head….She’s probably at home right now, hooked up to meds…..trying to rest from such a long day……Her mother is probably praying for recovery and a good day tomorrow……..Maybe she’ll get both……I hope so.

I am quite often reminded that my cause is not the only one in the world……Someone recently told me that there were people everywhere with as much passion and determination for their cause as I have for mine……What made Me Fine more important than any of the others??? Hmmmmm, nothing, I guess…..Its just that its mine…….I’ve seen the faces….I’ve heard the cries……I know how it feels to be helpless…….I just know…….and I can’t sleep without knowing I’ve done all I can……..It doesn’t make Me Fine more important….just more important TO ME…….I do often worry because I know there are people everywhere who are going to bed hungry….cold….sick……I know there are babies, children….being abused…..I know there are women who feel they have to endure the pain from the beatings…because they have no where else to go…….I know its around me….everywhere….So why pick such a small population and try to focus my attention there……???? Because I feel this is where I can use my experience and make a difference…….I know how important it is for these parents to know they have somewhere to turn…..someone who really does care…….

Not too many weeks ago we were closing the store for the evening….It was about to rain….and the girls and I were gathering our things to go home….We had already been to the grocery store so we loaded our stuff from the store refrigerator into the car……It had been a pretty good day……About that time, I turned the key to the car….and nothing happened…..My battery was dead. I tried a few more times, just in case…but I knew I had come outside earlier to roll the window up and probably left the ignition turned on…..I’ve done that more times than I care to admit…..I called Folden, but of course, he didn’t answer….So, I called the next best person….My uncle lives right down the street and has always come to my rescue in these sorts of situations……In fact, I think he keeps a set of jumper cables in his truck, just for me….Within minutes, he and my aunt were there to help out…..By this time it was raining really hard and the girls were out dancing in the huge mud puddle, (pond), in the middle of the parking lot…..My uncle hooked everything up and told me to give it a try…..When I reached for the door, bam….it was locked……UGH! Okay, so now…the car is dead, doors are locked, keys and groceries inside!!! The girls are “swimming” in their good school clothes and I’m thinking….what next? I thought, “call onstar!!” Simple enough, you would think…..My phone was going in and out, because of the storm, I guess…and each time I could get a real person on the line….the call would drop!!!! I was beginning to lose it a little….but kept trying to call back………FINALLY…an operator….He said, “no problem, we should have you going in no time….” Yeah, right…….About that time, Folden calls and I’m able to tell him my situation….He’s there in a few minutes….I tell my uncle to go on home and dry off…..Folden can take it from here……………………………He talks to on star….and for some reason….either the storm or the fact that the hood is up, they can’t unlock it immediately….could take a few minutes……Folden, the girls and I decided to run home and get dry clothes…go eat, (dinner is still in the car growing bacteria)….and then stop back by later to pick up my car……………………About an hour later, we return, and the doors are still locked….We call onstar again….and they say they’ll have to send out a locksmith….something is not working with the satellite……….shouldn’t be but a few minutes…….Well, by this time, its nearly 8pm….the girls need to take a bath and get ready for bed…the animals need to be fed and we’re all tired……..Folden volunteers to stay at the shop and wait while I take the girls home and get them ready for the next day……..(Folden tells me to look for another set of keys when I get home…but I knew they were locked in the car, too….I had just seen them earlier that day in the console….)……At 10pm, Folden was still waiting for a locksmith…..and at 10:30, he was still waiting…..I could sense a little frustration…..A friend of ours stopped by and I asked him to run to the shop and check on Folden….its only about 2 minutes from my house, but I really didn’t like Folden being out there alone….I was sure he was planning something painful for me!!!! I found an extra key fob in our junk drawer….I was sure it was from a previous car, but it wouldn’t hurt to try…..At least Folden would know I had made some attempt…..Rob drives up at 10:45 and the locksmith has just arrived….He couldn’t get the key to work….Rob pulls out the key fob and click, click…the doors unlocked….OUCH! Rob said both Folden and the locksmith seemed to want to harm him……..but he got a good laugh, none the less………….Folden finally got home and I spent the next hour or so apologizing…….I didn’t think it was such a big deal, but maybe I don’t take things as seriously as I should………..Folden went straight to bed…….The next morning, we met on the porch as we do every morning….He just cut his eyes at me……I decided to apologize one more time…but that was it…….Folden said, “don’t you think some days it would have been better to just stay in bed????”………………….................I thought about that comment for the rest of the day……”What would have happened had I just stayed in bed??”

Well, obviously, I wouldn’t have locked my keys in my car or run the battery down…I wouldn’t have lost my groceries in a hot car or interrupted my uncle’s dinner….I wouldn’t have messed up my husband’s evening and I wouldn’t have had anything to feel bad about because of some silly mistake…..but that’s simply not all……..

I struggle every morning to get out of bed….I know what I have to face each day when I open my eyes……..I am drenched with grief….and my heart is always heavy…..I sit outside for at least an hour before I bring myself to wake up everyone else and start our day……I pick out Anna Gaites’ clothes, wake up the girls and Folden and start the morning routine….Folden does breakfast…usually pancakes…and I run around making sure the lunches and book bags are packed….I look for the missing shoes, tidy up the ruffled hair and make sure the dogs have food and water….I finally hit the shower and throw on my clothes…….At the end of all that, I try to convince Wilson that I will have to go to jail if she misses another day of school and I round up everyone so we can head to Princeton…usually a couple minutes too late to make the tardy bell…….We say our goodbyes and I’m off to the gym……After an hour of torturing myself, I’m back at the store, in front of my computer by 10. The store opens and that’s when I get to see all the greatness around me………Lisa Brown is busy on the phone trying to find resources for this family…..a particular piece of equipment for that family…each of them, as if they were her own…..…Lisa Valentino is making calls and trying to find new sources of funding to help us stay afloat………..Jill, our newest addition, is helping us cover the store and organizing everything we do……..Aunt Margie is running Hope Shop 1, just a few miles down the road……..That doesn’t sound that much different than what most everyone does in a day…..except that Lisa Brown has just pulled a late night shift at another job, and with her degrees and credentials, she could be in a position that didn’t require so much of her time and effort, with double or triple the salary……Lisa Valentino could be sitting in a cushy office with an assistant, an expense account and fringe benefits to die for….Jill, a teacher, temporarily disabled from a sports injury, could be watching another episode of “All My Children” and taking a much needed rest…….Aunt Margie could be on a cruise with her husband, enjoying her retirement……..but all of them choose to be a part of Me Fine…..they choose to make a difference with their individual strengths and talents……..not because any of them have to. I think all of them set the standard for greatness. ….and it doesn’t stop there…….I see people bringing us items I’m sure they could consign and get a small fortune for…..I see people shop at our store when I know they could be in a designer boutique just as easily…..I see families with very limited resources throw a couple of dollars in our donation jar, just to help out….I see volunteers show up to sort clothes or help us move the heavy stuff……..repairmen volunteering to do a maintenance project and friends coming by to help us with some of the promo work….Getting out of bed is very hard for me……but each time I do, I witness another day full of miracles……possibilities come to life…….GREATNESS. I still miss Folden every second…..I wonder what he’d be like today….what he’d look like and sound like….What would be his favorite toy or his favorite place to eat….Would he enjoy preschool??? Would he be looking forward to starting kindergarten next year…..”big boy school”???????? Would he be a cowboy for Halloween or Bob the Builder???? What would he think about Santa….? In the middle of everything I go through everyday…these thoughts trickle in and out of my mind…….Can he see me??? Can he hear me??? Does he have any idea how much I miss him….???? Does he know how sad I am????? But yet, the greatness that I get to be a part of, because of him….Well, that helps me wake up the next day….and do it all over again.

Me Fine is always hanging on by a thread. We’ve been lucky this year….Lots of new resources, contacts and supporters…..We’ve probably doubled our revenues from last year…..I forget how young we are….just a mere 2 years in business…..and I’m very proud of all we’ve done……They said it wasn’t possible….and yet, we’re still here…..amazing!!! So many families have been able to make it through treatment, financially because someone cared enough to do something to help………..I pray we can work smart enough to keep it all going…….With so many great causes out there, its hard to compete for money….We are always desperate………..I appreciate all of you who have followed our story and taken it upon yourself to make a donation………We are doing everything in our power to make it all count!!!

We’re about to expand Second Hope Shop……The store is doing so well, we’re running out of room…..We’ve found a couple of contractors willing to help us out with an additional 50 feet…..That should help spread our stock out some, making room for more great stuff…..Hope Shop in downtown is about to get a complete overhaul….New stock and a new look……Stop by either store and check us out….We still need your good used stuff…….

Anybody have a storage pod we could use for a few months?….We'll need to store some of our stock while the addition is being built…..

That’s about it for now…..Please say a prayer as Christmas is coming….that’s one of the busiest times for us as we work hard to make sure each of our families has the best holiday possible…….our funds are very, very low right now…..We’ve had so many extreme hardship cases lately, our accounts are drained……….We have several families who need us right now….We continue to pray for a miracle………and although it may be easier, none of us will be quitting any time soon......

Take care……..if you have advice or ideas…….please pass them on!!!!

All my love, ~L

Wednesday, October 11, 2006

*** Just a short update (from Lisa B). We have added links to the Caringbridge sites of some of our new friends. Please take a minute to visit them and support them by leaving messages in their guestbooks. Thank you!

I guess an update is long overdue…..So much is going on…balancing it all gets tricky at times…..Okay, where to start?

All the tests came back normal….I didn’t know that they would, but I felt that whatever happened, we’d make it through….On the day of the mammogram, so many little signs popped up….so much to let me know that everything was going to be okay…..fortunately, it was…..I did get freaked out on the day of the surgery….The doctor was excellent, but his anxiousness to remove the cyst unnerved me quite a bit….I was so happy when they called the next morning to tell me it was all clear….gotta cut down on the caffeine…but otherwise, I’m good….As the phone rang, I remember thinking, “man, this could go either way….I could end this conversation and resume what I was doing, or be headed to one of the hospitals for months of treatment….” I never take life for granted.

Our purse gala was WONDERFUL!!!! I can hardly wait til next year…..You really have to try and attend…..We’re up to about $10,000.00 in proceeds…..awesome!!! It’s the first time in months that we have been out of the red….whew, what a relief….So many ladies attended…so many donated purses…..I am so grateful to all involved!

We lost one of our babies this week….Lisa attended the services and reported an understandably sad day….God, please grant them strength and peace….They fought so hard…..

Another family benefited from your donations to The Hope Shop and Second Hope Shop….We were able to fill their home with good used furniture….housewares, sheets, etc. They’ve had a tough time….Hopefully, they can get back on their feet…..

At Me Fine, we all talk about God Moments….little things that happen that prove to us that God is with us all the time…..guiding, directing, overseeing…..Judy is compiling a list of these incidents…..We had a really good one a couple of weeks ago….

Lisa and I had been working at the smaller store in Princeton, converting over to the fall line….Neither of us are usually there….We spend the bulk of our time at the 70 store….Lisa had left and I was just finishing things up, waiting to pick up my kids….A lady walked in looking for pink nurses’ pants and tops….Her husband had been injured in a work related accident…..He has been restricted to bed rest for months…..Her home had burned down and her son had been injured somehow…..Her mother had given her enough money to get food but she needed those scrubs to start a new job the following day….It seems she had gotten a job with some sort of home health care agency and she would be meeting the patient for the first time the next day……….We didn’t have the scrubs in the right color, so I called another thrift store and they had them in stock for $9.50 each……When I told her that, she started to cry….obviously having neither the gas nor the money to purchase from that store……Something just struck me…..We gave her enough money to get there and purchase the scrubs…plus we pulled a dress, shoes and accessories for the interview from our store……She left, offering all the thank yous she could muster amid all the tears….We felt good…I really never expected to hear from her again…..The very next day, she came to Second Hope to personally thank us and let me know she had the job….She and the patient hit it off from the very beginning and she thought she would enjoy caring for her….(Side note: The patient was a retired nurse and gave her several sets of scrubs and nurses shoes!) We figured we had her going in the right direction….The very next day, my new friend came in to report that her patient had fallen after she left and had been admitted into the hospital, long term…..The health care agency had no one else for her to care for….job lost……..We were quite a bit understaffed in the store but I knew the budget could not cover what she needed to make…..So, I just took a leap of faith….I asked her to help us out part time and she happily agreed…..Oddly, our sales have increased enough to warrant some help in the store…..She has organized, fluffed, stocked…anything needed and all with a great attitude…..She said she has had nothing but bad luck for the past two years and since she walked into our store, it was finally turning around…..Mission accomplished! She has some income and we have a much needed extra set of hands……I just LOVE it…..and I have never seen anyone work soooo hard…..

The other night, I decided to head down to the beach…it was kinda late but the kids seemed excited about our late night drive….They turned on a movie and I scanned the radio for something to occupy my mind…..I hit a talk station….At first, I thought it was Billy Graham…so I tuned in….but his name turned out to be Dr. Rogers???? Never did get all the info….Anyway, he was talking about the Bible and how there are directions that tells us how to save, spend, invest….all we need to know about managing our finances…..I continued to listen because I liked his honesty…..He said we all need to stop spending money we don’t have on things we don’t need to impress people we don’t like…..I cracked up a little…How true is that??? Then he started talking about investing in our spiritual future….He said we can’t take it with us….He told of an old, wealthy man…on his death bed…..He told his wife that he had worked so hard and saved all his money throughout his life….his was GOING to take it with him…He told her to put all his money in a jar with a handle and put it in the attic….After he died and his soul began to ascend, he would grab the handle and take his hard earned money with him…..The next day, the old man died….after his funeral, his wife remembered the money in the attic….she ran up the steps and looked to see if his plan had worked….The money was still where she had left it….She thought, “hmmmm, maybe I should have left it in the basement instead……”……..You can’t take it with you……Dr. Rogers confirmed that with scripture and then went on to say, “You can’t take it with you, you might as well send it on ahead”…..I really like that…..”Investing your assets in others is the best way to send it on….You will reap the benefits upon your arrival….” I’ve never really thought of it like that….makes sense…

Personally, things are going well….Its been a good day…..The kids were out of school on Friday, so after stopping by the store, we headed to the beach….When we got here, we took a much needed nap and went to Wal-Mart to get our nails done….Somehow, we even talked Folden into going with us…..Afterwards, we went to eat Mexican and then ice cream….It was a fun night…..Today, the girls and I went down to Swansboro to look around in those little shops….We’ve been doing some preliminary Christmas shopping and those quaint stores have some really fun and unique things…..We ate lunch and came back home for another nap…..Since, I’ve watched the girls make a tent out of the dining room chairs….pull each other across the floor on an old blanket and basically enjoy just being here….The dogs even joined in. My house is trashed but who cares….I’ll clean it all up tomorrow, maybe….Wilson is doing better…..We’ve started seeing a counselor and it seems that Wilson has OCD…Obsessive and compulsive disorder….Not a big deal really under normal circumstances, but the trauma of losing her brother has exacerbated the condition triggering phobias and a new assortment of anxieties…It had gotten tough for her….Her counselor is treating her for the underlying problem and helping her work through the rest. I have seen a different child, lately. We still have a long way to go, but thank God we seem to be going in the right direction…..She worries so much…she told me she just wanted to be normal….She said she worries so much that sometimes, she doesn’t want to have to wake up and face anything…..That hurts. She’s only nine. As her mother, I can only hope we’re doing the right thing.

Folden is doing okay….He still has good days and bad days…….Ampa and GeeRose have sold their farm…They will be moving to Selma, early next Spring….FW has already started working on the new place….It should be awesome…He told me he really needed the new challenge….Its good to see him actually want to get up and do something….I have been worried that his broken heart would eventually kill him….Rose has been helping out in the store…..She seems to love it as much as I do….Actually, I would rather be there than almost anywhere else….It brings me peace.

Me Fine is growing…..We have Lisa Brown, Associate Director and Director of Family Services….Lisa Valentino, Director of Development, is working hard on fundraising and resources….Frances, our newest Second Hope Shop employee, is sifting through our donations and trying to make the store look as good as it can….Judy Gossett helps as much as she can in the store….…..Aunt Margie is heading up the Hope Shop, with volunteers Jeana Height and Aunt Linda….I think she has a high school student that is going to work a couple of hours a week to earn money for a class trip…..Josh Barefoot, our resident male, has just come on board at Second Hope…He comes after school each day and with his wonderful personality, he has brightened up the place….Amber Wood is also helping out from time to time with our clerical stuff….and now we even have Jill King….another new addition….Jill is part time but gives us full time attention….She is presently organizing the store and our procedures….We definitely need a routine….Ashton Mudd has been filling in from time to time….Josh, (preacher Josh), has helped out a lot and Rob Collins helps out by voluntarily doing our lawn…..There are others who contribute from time to time…….We are soooo lucky to have each one.…..all are God sent……

Upcoming events:

Lights on the Neuse…a new Christmas light show in the Johnston County area…including a hay ride…..$2.00 from each adult ticket will be donated to Me Fine….More info will be included at www.mefinefoundation.org.

Eric Montross has generously donated a pair of his size 19, signed game shoes…..They are displayed at Clayton Fitness for silent auction….on the first day, the bid was at $205. Contact Lisa Valentino for more information…. Mefinedevelop@aol.com …..

Got a resource for unique purse donations??? Let us know.

Don’t forget to do all your internet searches through GoodSearch… www.goodsearch.com ….We benefit financially from each search….

State Employees….We participate in the State Employees Combined Campaign….We need your support.

Register your Food Lion card….Lisa Brown can help you with that…. Mefinefoundation@aol.com….

Go to CafePress.com/mefine and purchase Me Fine apparel….About 50f the cost of each item goes directly to us….

We’re gearing up for Christmas….Many families have limited resources for the holidays….Sign up to help a family.

We have monthly drafts for pledges…..even $10 a month can make a huge difference….

Join the change exchange…We’ll send you a donation package to be placed in your business….

Please continue to send your good, used items to Hope Shop and Second Hope….We welcome any special craft items you would like to share…

We’re having a carwash at Second Hope next Saturday….Please stop by…The youth from Hephzibah Baptist Church has volunteered to organize this event….

Visit us on November 11th in downtown Princeton…Me Fine will have an info table at the town parade.

I know there’s more….but for now, that’s all I have….Thanks for tuning in…..~L

Friday, September 8, 2006 9:09 AM CDT

Quick update!!!

ALL TEST RESULTS CAME BACK NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you for all your prayers and concern!!!!! …More on that later.

The jersey bid is up to $1000.00!!!!!!!!!!!!

Eric Montross has donated a pair of his personal shoes, signed!!!!! We will be auctioning those as well!!!

The purse gala is Tuesday night, September 12th……..We have about 30 purses donated from around the world….donations from many celebrities from local all the way to Miss America!!!!!!!!!!!!!!!! Ladies, please call to join in on the fun…..We have spots for about 20 more people……Silent auction items, great southern food, door prizes….it should be a blast……..adorn yourself with pearls or a great hat and come ready to bid!!!! These purses awesome!!! Please email me……Deadline for reservations is Friday!!!! A $25 donation will get you in the door!!!!!!!!!!!!!!! Hope to see you there!!!!!!!!!!!!!!!!!!!!!!!!! (Listen to 107.9 Friday morning and maybe you’ll hear Lisa Valentino and her live promotion!!!)

Gotta run!!! Lisa Brown and I are headed to Hope Shop to convert our inventory over to the fall line…..Some great stuff will be in the store before the weekend………Come by and see us!!!!!! ~L

Sunday, August 27, 2006 10:00 AM CDT

Me Fine is auctioning a signed Hurricanes Team Jersey!!! Bidding will continue through September 15th. The Jersey is displayed at Clayton Fitness. Stop by and check it out. The current bid, as of this posting, is $400.00.….Contact Lisa Valentino at mefinedevelop@aol.com for more information or to place a bid….The signed jersey was generously donated by The Carolina Hurricanes so 100% of the proceeds will benefit the children and families that we serve!!!

Today was the Boat Raffle. Things went very well. We appreciate the continued support of the Walker family over at Goose Creek Marine. Totals are not completely in but we grossed somewhere around $20,000.00. Amazing! I want to also mention the graciousness of Steve Hardy and 107.9, WNCT Radio for allowing us airtime. Everyone has been very generous with contributions and in purchasing tickets. We are forever grateful!!!! John Barnes of Clayton won the 16 ft John Boat, motor and custom made trailer. I am usually fierce with confidentiality, however, I do have to note that Mr. Barnes GENEROUSLY decided to sell the boat and split the earnings with Me Fine…..So, that just added at least another $5000.00 for the families’ needs!!!!!!!!!!!!!! Can I get a PRAISE GOD!!!!!!!

Hope Shop and Second Hope Shop are doing GREAT….I can only say thank you to all of you who choose to donate your wonderful items to our stores….and for those of you who have been shopping with us……The profits from these stores pay our administrative costs so that each and every penny donated can go exactly where it is intended…..

Please note that our new contact information is Me Fine Foundation, 5100 US Hwy 70 East, Princeton, NC 27569.….919-202-0086.…..Our fax number is 919-202-0059.……Email and website addresses are the same……

*************************************************************

At Me Fine, we talk daily about HOPE…..I try to stay hopeful always….FW says when you don’t have hope, you have nothing. I wonder how many times he said that to me while we were at UNC and Duke?…..”If you don’t have HOPE, Lori Ann, you might as well be dead….” God, that seems like yesterday……
About a month ago, it was time for that dreaded “yearly thing” that all of us ladies have to deal with…..and if you’re like me, you’re HOPEFUL that all those tests come back favorable……So, I go through the whole pap smear thing, blood tests, mammograms…..and about every other test that is possible………Oh! I just HATE it….I dread it for days, even weeks beforehand……………2 weeks later, my doctor calls back and says, the pap is clear but I want you to see a specialist for a few more tests…..(I’m about to turn 40...red flags have started popping up everywhere!!!)…….She continues with, ….and your mammogram shows some “suspicious” spots on the right side….so, you’ll need to go for a more in depth film……….UGH! Soooooooooo, I go the next day for the mammogram………after 6 pictures and an ultrasound, they have ruled out 2 of the 3 suspicious spots….The third spot is new and although it doesn’t have many of the characteristics of cancer, I have been advised to have a biopsy done….just to make sure……Later the doctor calls back to say that upon further review, he feels I could just get another mammogram done in 6 months and if there are no changes, then we’ll know it isn’t cancerous…..I was almost sick, thinking back to the 3 times that a “specialist” told me that Folden DID NOT have leukemia…..After insisting that he be officially tested, it turned out, obviously, that he did……I have opted to not only have a biopsy, but have the mass removed…..I told my doctor that I found no comfort in statistics unless it was 100% or 0.……..I’ll be scheduling surgery in the next few days……It may sound like I don’t trust doctors, but I do…….I have so much admiration for people who devote their lives to helping people feel better……..I’m so glad they’re there……I just feel like we have to manage our own health based on the information we are provided with……My blood work was normal and I’m still waiting on the test results from the other specialist….HOPEFULLY, things will work out for the best. The night before, I found myself praying for God’s will…….not clear results or great counts…….Just that God’s will for me will be manageable and that I will have enough courage to face whatever is decided……I’ve come a long way……I’ve often tried to “let God drive” and then reach over and grab the wheel or stick my foot on the gas….This time, I’ve just decided that my life is in God’s hands…the same hands that hold my son…..and I’ll face whatever comes with all the strength and faith I have…..

We still get new families in daily. Lisa is quite often overwhelmed with the lack of funds compared to the needs. We still use the pay and pray method. We take care of whatever we can and worry how to pay for it when the time comes. So far, so good. She has been following one particular family for several months. The baby has been sick since birth and has been inpatient nearly his whole life. We were contacted way back for intervention with food, gas and other expenses. This family has never asked us for more than they needed to survive, although its clear their needs are great. Recently, the mother was advised, after 8 months of treatment, that the baby is nearing end of life….nothing more can be done. Mom has opted to take her baby home for his transition. Me Fine was contacted once more…..for gas money for the journey. I nearly fell to my knees…..Here is a mother, taking her baby child home….knowing the outcome…….and she has to ask for help to get enough gas to get her home…..Dear God….can you imagine???? We all think we have tough days…..I’ve probably said it before, but let me say this one more time…..If you can lay your head on your own pillow, tuck your kids into their own bed……make a choice between doing laundry or driving to the grocery store…….watch a little league game or “The Wiggles”, (for the 32nd time)…….then you are blessed. If you can put a band-aid and a kiss on a boo boo and its all better or watch your kid scarf down oreos and icecream, even for breakfast….then you are blessed…..If you have friends and family to annoy you and get in your business…..children who demand too much and even carpool duty for the whole week……then you are so blessed……….Please don’t let the little aggravations that occur in a day’s time over shadow the grand fortune that is at your fingertips………If you get the opportunity to teach your child to ride a bike or drive, blow sticky bubbles or slow dance…..then believe it or not…..that really is the good stuff…………………….Please remember all the kids and their parents or caregivers who will never know those joys……

…..all my love, ~L.

Saturday, August 19, 2006 9:41 PM CDT

I did make it back to church....Josh was a little under the weather....but he delivered the message that I think I wanted to hear....I couldn't help but think that God was trying to make a point.........Josh was really sick....but yet, God used him, even in his weakened state, to say what was supposed to be said.....(God doesn't expect ideal situations....he can use ANYBODY...if we allow it....)...........I swear, as I sat there, I could not hear Josh....but a masterful voice bellowing from above.....almost as if God himself was talking to us about what life is all about........"Josh" says that just because we're good people...that doesn't make us immune to bad things......but God does give us the tools we need to face whatever diversity life hands us.......God DOES give us more than we can handle...or rather, he doesn't prevent sadness, grief and hardship from coming our way.......but he never leaves us to face those battles alone.....I still remember sitting on those concrete benches in front of Duke Children's.....wondering why me......I also remember that gentle breeze that would occasionally sweep across my face.....reminding me constantly, "I am here"........God continues to keep his hand on my shoulder.......What a comfort.....what a priviledge.....I just think we look at life all wrong...most of the time...............................Sure, there's tons of sadness here.....mountains of grief......truck loads of hardships.....Probably, most of us think its all directed at us......but believe me, its not......there is ALWAYS someone else who has it tougher.....I guess I see it all as a stepping stone to the good stuff.........practice for the perfect place that we're going to end up..............This place is just school....one lesson after another..........Certainly, some of it seems too hard to even fathom from this end....but from up there....everything is just fine.....They're the lucky ones......

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

Okay....enough of my ameteur preaching.......Let's leave that to the pros....

Me Fine business........Well, we opened the Second Hope Shop at 5100 US Hwy 70 East, Princeton......We are also moving our offices...so please stop by........10-6 Tuesday - Friday.........8:30 - 3:00 Saturday..............Everyone has been so generous........Our stock room is bursting at the seams...so, when a unit gets low, we can fill it right back up.........We are low on boys clothing...but I know its on the way........WHATEVER you have is needed........Furniture, clothing, purses, shoes, lamps, bedding, toys, jewelry, .........ANYTHING....Some of our contributors think we only take clothing......We also have a local hot dog vendor who sets up on Saturdays...........Stop by and try one!!!! They're the best........and even the proceeds from the vendor goes to Me Fine....When it gets colder, we will also include soups, coffee and other weather appropriate items.........We'll have a little mini-mall going on before the end of the year!!!!! Vendors and crafters welcome........!!! We've set our goals high......we appreciate your support in helping us get there!!!

Have you had a chance to check out the new website....let me know what you think........We always want to know how we can improve things.....We've just added a couple more pages.....2006 Contributors, SuperHeroes and Donations.......Check it out....Now, I want to see everyone sign up for our monthly pledges....Even our banker is contributing $10 month......Just copy the pledge form and fax it right on over................With the Hope Shop and the Second Hope Shop in operation, 100% of your pledge will go directly to the children....no administrative costs, no overhead, nothing comes out of our donations...........That was one of our primary goals from the beginning.......Everything goes to exactly where its intended....and your contribution makes even more of a difference today than it can anywhere else!!

Please pray for Jashaia and her family.........I am including new links at the bottom............

Everyone's piled up on the sofa watching a movie and crunching on popcorn.....don't wanna miss that....(..."enjoying one moment at a time")..........I'll take my moments however they come.....Take care and thanks so much for continuing to check in.....It means a lot to me..........~L

Thursday, July 27, 2006 7:44 PM CDT

Well, its not even 9 pm and here I am all comfy in my pjs, nestled in my bed.......my body is tired but my mind is going a hundred miles an hour...........Whew! It has certainly been a week!

Since the new store is about to open, I figured I'd better bring my butt home from the beach and get busy......Maybe I'll get to go back before CHRISTMAS!!!.......We are about to open Second Hope Shop at 5100 Highway 70 East, near Princeton....Its a 3200 sq ft metal building on the right, heading from Clayton to Princeton..........We have enough stuff to open but we sure need some donations to come in soon.........We get our new phone number tomorrow.......We think its going to be 202-0086........but if you need directions, donation information or anything else, call us at the office...for now.....359-2030.........I should have a confirmation on the new number soon......................We are going to offer resale items such as clothing...all sizes, furniture, interiors, linens, lamps, jewelry, shoes....about anything you can imagine.....all for rock bottom prices....We do try to maintain high quality stock....so please take time to stop by an say hello........If you haven't been to our Edwards Street location.....we'll still be there, too!!! My Aunt Margie has taken over that store and along with the help of my other aunt, Linda, and a few friends, that store is thriving......Please, please think of us if you have anything to discard....We can schedule pick ups for larger loads and its all tax deductible.......The more we have to offer, the less likely we are to have to beg for your money!!!! It gives everyone an opportunity to do something to help us...and the families we assist..........

We will be in the Princeton News Leader next week.........there is so much going on in Me Fine that I can't say exactly what the story will be about....Probably Hope House.....That project is still moving along.....Please say a prayer!!!

Last Sunday, the girls, Folden, Rose and I all went to church.......Josh, (our pastor), and his wife, Joy, just had a beautiful baby girl....Sarah Beth was born on July 14th, (I think)....Josh's parent are down.....2 people you'd really be blessed to meet.......ANYWAY.....Lisa organized our Christmas in July at Duke...5200 and UNC...5C........Pops, Josh's father, was our Santa.............What a blessing.........!!! I decided to stay behind for several reasons....The units will only allow a few of us to go on the floors and I was needed to get the new store in order.........So, it just made sense.......Lisa and Judy went along with Pops and Josh..........and from what I hear.......it was amazing!!! The kids were thrilled to see Santa on his way home from his summer vacation......One little girl, who signs, rubbed her tummy and said Ho, Ho, Ho when she saw "Santa".....Reports were that all the kids were mesmerized and Pops has already signed on for Christmas in December............Anyone I've ever known who has visited one of those units never leaves the same as when they got there..............Thank you ALL who donated toys for the children..........I can only tell you your time was well spent and made such a difference.......How many times in a day do you get to impact another person's life by choice???

Josh spoke on Sunday about something we've probably all heard before......I, quite often, get to see Josh without his pastor hat on....I think that's one of the things that draws me to him....He is just a normal person, just like me....with faults...disappointments, failures etc........He has shown me that its okay not to be perfect.....I'm just human.....But, man, when he gets in that pulpit....I can hear God echoing through his voice....I always feel like he's speaking directly to ME.....(most of the time, he probably is!!!) Sunday he talked about the Serenity Prayer.......We've all heard it....

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Josh said...."Did you know there's a second verse?"......Well, I've heard it a million times....and prayed it more times than I can count....but I NEVER knew there was a second verse......

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

You gotta know, I was just blown away........I found myself hanging onto every word.....Not drifting off into what I wanted for lunch....or how much the light bill was this month.....but focused on each and every word that came out of his mouth....as if his words were my fuel.....I do believe God was speaking to me and Folden through Josh......

Josh continued on about the 1st verse of the prayer...breaking it down and referring back to the Bible for proof of its meaning.....Several points stood out to me.....Josh confirmed my thoughts that the Bible DOES NOT say that God will not give you more than you can handle....I've often wondered how God thought I could sit by and watch my son die along with many other children that I grew to care about.....How did God think I could handle watching my son suffer so many times....How I could handle burying him before he was ever even old enough to ride a bike....How could I handle telling my girls that there really are monsters out there.....and no, Mommy can't keep you safe from cancer.....God never thought I could handle it......He never expected me to.....God promises that he will not give me more TEMPTATION than I can handle....and he promises that there is nothing that I can't handle with HIS grace............Huh, BIG difference..........

Josh went on to talk about how we all face struggles in life....but God is not forsaking us.....Its all for the greater good.....All the good and the bad that we are put up against is not just that.....its all intertwined into something much bigger....something so huge that we don't even have the capacity to understand it........Maybe, my heartaches and grief are not really a lesson for me....but for you.....and maybe your devastations are a lesson for me.....I don't think any of us realize how much we affect others just by our actions......An example: Lisa B. has been down a little lately....I can hear it in her voice.....She has talked to me about some of her concerns....mostly life stuff.....nothing she can't deal with...but heavy on her mind, nonetheless.....During the whole Christmas in July thing....she had the opportunity to talk to Pops on the phone......She had not met him in person at this point......After their conversation, she called me to say she felt so peaceful....Pops' sunny disposition, caring and compassionate nature and soothing voice just penetrated her mind and subtly let her know, everything is going to be alright.......Pops had no idea that Lisa was down...but yet, he made a difference just by being himself......It may sound like a stretch to you, but not to me.....I believe its all connected one way or another.............

Josh went on to talk about the story that I'm sure many of you have read over the internet............Readers' Digest version.....A little boy in treatment for a heart condition....surgeon says, "Do you know what I'll find when I open up your heart?" Little boy says, "you'll find Jesus"....The surgeon, a bit irritated, says "no, I'll find damaged valves, leaking vessels" and so on........The little boy continues to insist that he'll find Jesus there..."all the stories in the Bible say so....everyone tells me Jesus is in my heart"...........The surgeon does his surgery, goes back to his office to record his notes....He talks about all the damage and the prognosis being death in a short time....The surgeon screams upward..."God, how could you do this to the family....this child never even had a chance....Why did you put him here only to take him away....?" God replied, "He is of My flock....I did not put him there to be taken away from his family....but yet, I allowed him to leave his heavenly family to draw another person INTO my flock"......The next day, the little boy asks the Doctor, "What did you find when you looked into my heart?"...The Doctor replied, "I found Jesus there..."

Point being.....although the family was obviously saddened by the loss of their child, this child was put here to save the soul of another......I think if we could just see how we are all linked together, and our hardships are only stepping stones....maybe we could all find joy in even the saddest situations....Rather than thinking God has forsaken us, maybe we should see how God is actually favoring us by including us in His divine plan.........using us to change something else...and make it better..........I guess there is no better example than the life of Jesus............Jesus knew what was ahead of him....but through his torture and unbearable pain....all of us were saved from anything similar......That's pretty powerful stuff..........

Folden has been reading a book....something about "how not to worry"....There is a quote that says, I once was sad because I had no shoes until I met a man who had no feet.........I don't know how it all works....I just know that we should all look outside of our small little worlds and realize there is something much bigger and more important out there.......We are all connected in some way.....

Josh is going to speak about the second verse this coming Sunday....I may just get there early so I don't miss a second........

Please don't forget the Strong Man Tournament at Clayton Fitness this Saturday, the 29th, starting at noon.......we're having a cake walk, a bull ride, lifting competitions, hotdogs, etc, etc, etc............Please stop by if you can................All proceeds benefit the foundation....and we certainly need funds right now......We have so many new families in, its hard to keep track.....

Hope Shop and Second Hope need your donations........Please pass the information on to your friends and co-workers....WE NEED YOUR STUFF!!!!!!

Its still a good time to sign up for monthly pledges!!! Any amount, $10 or more, can be automatically drafted.........You can also make donations through OUR NEW WEBSITE!!!!!!!!!!!!! Have you seen it????? Check it out at www.mefinefoundation.org.....Please purchase a raffle ticket....1/300 chance to win a new john boat, motor and trailer...Drawing held August 26th at Goose Creek Marine in Newport.....

Southern Ladies Purse Exchange and Gala is being held in September..........Suit up in your best vintage gowns and adorn yourself with pearls for this fabulous Purse auction.....Its by invitation only....so let Lisa Valentino know you'd like to be included....Unique purses are coming from around the world....and from local and regional celebrities.................

Thanks for tuning in....lots of bits and pieces.....maybe it all only makes sense to me.... ..I think I'm checking out for tonight................Please say a special prayer for Rebecca and all the families who are away from home tonight......All my love, ~L

Thursday, July 27, 2006 7:44 PM CDT

Thursday, July 20, 2006 8:16 PM CDT

ME FINE NEWS!

The Hope Shop in Princeton, our Me Fine Thrift store, is doing fabulous!!! Thanks for all the wonderful donations....Please consider cleaning out your closets, garages and attics to keep the Hope Shop stocked!!!! For those of you looking for a great deal, visit us on Edwards Street in Princeton...near the post office....My Aunt Margie is now the Hope Shop 1 Manager...Stop by and say hello!!!! 919-936-2900

Second Hope Shop coming soon.......We are in the process of purchasing a large building on HWY 70 near Princeton! We will carry the same quality items as in the Princeton store, just more!!!! Please, please let us know if you have something to contribute to either store......and tell your friends!

I was thinking....The money you save at our thrift stores could cover your grocery bill... the money you spend could buy food for a family who is struggling to get their child through treatment!....Please help us if you can....

We also need an addition to the hwy 70 metal building....anyone have any contacts??? We are hoping to move some of our administrative offices to this location as well!!!!

HOPE HOUSE is in the sheet rock stage......say a prayer!!!

The new website is still in progress...we're working out the kinks.....

From Lisa Valentino's Desk...Director of Development:
*Upcoming Fundraisers~
Strong Man Tournament...Clayton Fitness...July 29th at noon.
Cake walk, kids games, face painting, food....fun! 359-6060
Boat Raffle...$100...winner announced August 26th at Goose Creek Marine in Newport...New John Boat and Trailer...
Get your teeth whitened at Folden's office for a $200 donation to Me Fine!!!!! 553-2238
Invite Lisa to speak at your group or corporate function! She's really good at expressing our goals and mission...
Lisa encourages everyone to sign up for monthly pledges....a little can turn into a lot for these families....no amount is too small........
Thank you, thank you, thank you...to all have supported us so far......
mefinedevelop@aol.com

From Lisa Brown's Desk...Associate Director:
We have new families coming in and an alert from one of the hospitals that our next group of families will need even more resources.....Please continue to pray for our success in helping each and every family that needs us....

A special thank you to all the VBS groups that chose Me Fine as their mission.....So many families are being helped right this very minute because of your generosity.....
mefinefoundation@aol.com

Stay tuned....more information coming soon!

Saturday, June 17, 2006 11:08 PM CDT

The world, as I see it, seems to be full of hills and valleys. I go through periods where things are going my way….the journey doesn’t seem unbearable and life is manageable. Other times, its just all too much…..way too much.

Yesterday, I was catching up on me fine business….emailing back and forth between Lisa, Lisa and Judy. My kids and their friends were all sitting around the table eating, laughing and making plans for the day…..Folden was making coffee….my sister-in-law, Tammy was sitting at the bar. It was going to be a nice, relaxing day at the beach. I wanted to check on one more thing before I signed off….an email from Lisa B. popped up and I opened it thinking it was going to be just another tidbit of information or an addition to my to do list……but nope. It was just one sentence, “Didn’t know if you knew…” I couldn’t imagine what it was, so I scrolled down to the attachment. It was a message from Emmaline Simpson. If you have been with me since the beginning, you would know who Emmaline is……Others, check out www.caringbridge.org/nc/rebecca…….Rebecca is a teenager we met during our first stay at UNC. Rebecca’s mother and father, Emmaline and Jeff, stopped by our room to “welcome” us to the neighborhood….giving us a little insight on how to make the hospital beds more comfortable, to let us know where the laundry room is and basic insider tips on how things work on 5C. We talked for a while outside Folden’s door….Rebecca was 13...a well rounded young lady with unbelievable faith. She had been diagnosed with AML about a month prior. She had an older sister and all of them lived in Raleigh. Once in a while, during our extended stays, Rebecca would stop by to check on us….A few times, she and Matthew, another UNC patient, would sit outside my door with me and just talk. They would tell me about the treatment through their eyes…giving me their take on how various drugs or procedures made them feel….something Folden couldn’t tell me at 17 months old. I appreciated the time they took to give my baby son a voice…helping me to understand what went on with him….

Rebecca went through a lot during her treatment. I kept up with her as best I could. HIPPA regulations are strongly enforced at UNC….It was difficult to get anything out of those nurses…especially during the times Rebecca wasn’t doing well and she and her family were in their room….door closed for days. After a long and difficult journey, Rebecca was labeled “in remission” about a couple of weeks before Folden.

When Folden relapsed on December 17, 2004, the first thing I wanted to know when we returned for treatment was “How’s Rebecca”…..Of course, no one would tell me….I tried to pull it out of them, bit by sneaky bit….but information was still limited.... Then, Sally Pinon comes on the scene. She is Gabe’s mother….Gabe was admitted in December and their family knew Rebecca. She told me about the CaringBridge site that Rebecca was keeping….and I frantically ran to my computer to catch up on what had been happening since we last saw her in the fall………Rebecca had relapsed as well and was in the transplant unit at UNC getting a bone marrow transplant...She had been matched to a 29 year old male...I often wondered what made him decide to be added to the registry....and did he know what a wonderful person he was becoming a part of....……I continued to follow Rebecca from that point on….reading her late night entries, her stories about her treatment, her friends and her life as an AML patient….I tried so hard to mirror her faith….She fully believed God was in control and whatever He decided was going to happen, she would accept it without question. That was a point I hadn’t seemed to get to. I kept reading her entries day after day, trying to find my own peace with God through her words.

Rebecca came out of transplant shortly before we went into Duke for Folden’s. I often wondered if we should have tried unrelated bone marrow rather than cord blood. That decision has haunted me for a while. Would things have been different at UNC….Would the outcome have been better? UNC discouraged us from admitting Folden to their transplant unit because of his young age...….They had lost their transplant doctor, Dr. Shipp, to some type of adult cancer just a few months earlier...….he was about my age….He had yet to be replaced and they unanimously agreed to send us to Duke to be under Dr. K and Dr. Martin’s care…….I often wondered what would have been different had Dr. Shipp still been there and Folden was able to get adult marrow rather than cord blood……..Cord blood is cutting edge….it is supposed to be the best method for treating AML and ALL in children….plus a world of other blood disorders in pediatric patients………I did what I was advised to do……

During Folden’s transplants, I heard from Rebecca quite often………I continued to read her journal everyday. I tried to capture her faith and feed on her strength…….Her descriptions of how each med affected her and what her body was going through after transplant was information that I was going to be able to use when we went home….Folden would be dealing with the same symptoms as Rebecca….I was just soaking in the words so that I could care for Folden even better….after this was all over.

As you all know, Folden never had to experience the aftermath of transplant…..God took care of the side effects of steroids, radiation and extremely high doses of antibiotics…..God made sure that he never suffered again…not even a little.....On the day that we buried my son, I was lost in my own grief…….smothering in pain and heartache……As soon as I was able, I got into the car and asked to go home….As we were driving away, I could see Rebecca and her family standing over Folden’s grave, obviously saddened by the loss of a little boy they would have never known had they not been part of the “neighborhood”….When I think back now to the day of Folden’s funeral, seeing Rebecca’s face is one of the moments that has been captured…..bittersweet.

I have continued to follow Rebecca and her family. Rebecca and I have actually spoken together at a couple of events and she has continuously supported Me Fine in whatever capacity possible. She has recovered nicely and gone on with her life…She dances in the ballet, does well in school, loves being with her family and friends….and, pretty much, lives as a normal teenager….She still has to revisit the “neighborhood” now and then for check ups, relief from after effects of treatment and on and on…..but she has taken it all in stride, seeing the best side of life at all times…….She has inspired many kids in her situation, many parents and caregivers like me and people from all over who will probably never even know what AML means…they just found her site and find daily inspiration in her faith and spirit………..

As I continued to scroll down beyond Lisa’s message…..my heart sank when I read Emmaline’s words. “Guess you knew that Rebecca has relapsed….”……..OH MY GOD!!!! That just couldn’t be……Rebecca had made it out of there……..she is at least 2 years post transplant….I have checked on her from time to time and she is doing GREAT other than a few minor glitches now and then…….NO! NO! NO! I am certain I just checked her site a few weeks ago…..It seemed like any other entry I've read over the past year......must have missed the part about second transplant…not expecting that to be included anywhere in her recent entries...……I was just sickened.

I quickly signed onto her site to catch up on what I had missed……….It seems that at some point, Rebecca had started experiencing severe headaches….She was about to have a procedure done to relieve neuropathy….obviously a side effect of treatment…..and somewhere during the process, at the end of March, Rebecca’s cancer had returned…….UGH!!!!!!!!!!!!!! I read on, through the course of the next few weeks, tears falling as if she were my own child….my heart ached as I read each detail….all too familiar….Rebecca is still as spirited as ever, even more filled with faith…..and an underlying courage that is rare in any of us, especially a teenager who has been through something so scary as CANCER!

When I read this, I was still sitting with all the children while they ate breakfast….I just gasped and said, “Folden, Rebecca relapsed!” I couldn’t fight the tears or the huge lump in my throat….I just walked away, trying so hard not to scare the kids…..The whole day was spent heavy hearted. I can’t get that out of my head…..”Rebecca has relapsed…” How did I miss that? How did this happen....??

As I read entry after entry since the March update….so many familiar feelings came to the surface. My God, how they must have felt to hear that dreaded word….RELAPSE. It must have echoed throughout and cut down to the deepest crevice of their hope filled hearts…….Rebecca has been doing excellent….I’m sure when I checked on her last, the entry was just like the rest….she was living life, dealing with the disease and taking each day head on….I don’t remember any hint of a set back….I’m sure I would have picked that up……….

I can’t help but wonder what I was doing on the day in March that Rebecca and her family received the news. Did I feel a small shiver….did I have to sit down at some point from an unexplained feeling???? After the fight Rebecca has put forth, I feel like I should have at least been side tracked at the moment Rebecca realized she had to do it again….Good things don’t always happen to good people…..Its hard to believe that this happens to children around the world….everyday…..and we all go on…….uninterrupted.

From that point…I really can’t quite think of what we did next…..I do remember that I stayed on the verge of tears all day…..At Me Fine, it is our policy that when we get to the point that we no longer cry when a child gets bad news, we no longer get worried when a family is running low on food or gas money….we no longer feel thrilled when a child is cured or goes home…..when we are no longer affected by the faces on the CaringBridge pages……that is when we stop….that is when we have been doing it way too long. No, I don’t like the sadness….but in order to be the best at what we do….we must feel….we can not become hardened or desensitized to what these families, and especially the children, have to face…..When we stop crying…our tenure is over….….Even after all this time….all that I have seen….I have still not been doing it too long….and neither have any of the others that work so hard through Me Fine…..

Maybe some of you have not read Rebecca’s journal….I do hope you will take the time to do that….Let her know you’re from the Me Fine Camp and we all have our arms around her….cheering her on…..After meeting her through her journal, I’ll bet you will be in awe of her…just as I am. Please say a prayer for her as she continues on this bumpy, winding road….all the way to the cure…..

~~~~~~~~

Tammy and I sat on the back deck and watched our kids play on one of those blow up waterslides I found at Wal-Mart….My heart was just on fire to see those kids chase each other around….competing to see who could make the biggest splash….Folden pitched two tents and all the kids just bubbled over with excitement……..It was such a pretty day……filled with mischieveous giggles....I think that sort of thing is the best stuff in life……..we all tend to overlook those moments that are so obviously a blessing….a memory in the making…..I am guilty, as well…….and I certainly know better………I have been really trying to focus on my girls….I try to limit my time working and direct my time to them….I have made it a habit to turn my phone OFF during “our” time……Yes, what I do is VERY important to me….It is my passion, without question. I believe Me Fine was exactly what I was put on this Earth to do….I will not stop until we are no longer needed…..but I do have to step back and see how much my daughters need me. They are still here….growing faster than I ever imagined….I really don’t want to miss a second….and I want them to look back at their childhood and see my face in every good memory they retain……I pray that God will help me find a balance between my two passions….My family and Me Fine. I love them both so much.

~~~

Folden and I took all the kids to see “Cars”…Oh my….if you haven’t seen that….please, please take time to go…….It is awesome….I was already a bit emotional from Rebecca’s news…..and I cried all the way through the movie…..Everything about the movie reminded me of my journey…..I started out, simply thinking how much Folden IV would have loved the movie…..He loved anything with wheels….Then the story….perfect…..just perfect!!!! We left the theater and headed out to eat pizza….what a perfect night for my family…..I was thankful to be able to be included…..

After we settled in…the girls and their friends just crashed…..Everyone was extremely tired and I didn’t have to rock any of them…..I curled up on the couch with my dog and my blanket….Folden wanted to sleep on the boat so that he could get a head start on the fish this morning……..I was tired but found it hard to clear my mind to sleep…….I started thinking, once again, about Rebecca….and maybe not just Rebecca, but all the kids….all the faces clicked through my mind….face after face…story after story……I often pray that this has all been a nightmare and one day, I’m going to just wake up…..maybe it would take me a minute to realize what a horrible, horrible dream I had just had….how real it all seemed….and then in one brief second….it was over….I wonder what I would do first….???? Would I run to where Foldie was sleeping and grab him and hug him so tightly that he cried??? He would be 4 ½ now…..maybe a little tan from so much time on his dad’s big, big boat….blond hair sparkling from the summer sun…….eyes as blue as the ocean water……..I would just want to touch him….stroke his face….just the way I did when he was a baby….I always thought if one of my children lost their sight, or couldn't see me for some reason...they would know mommy was near from the familiar feeling of my hand stroking their cheeks….I would rub his head…entangling my fingers in the little curls that fell softly around his ears......I would grab him up and dance around the room….no need for music….feet dangling…arms wrapped tightly around my neck……I would dance right outside….refusing to let him go….I would grab his hand and say “Let’s RUN”…..feel the grass on our feet, the sand between our toes………I would pick him a fresh apple from a tree…and tell him to take a huge bite….no need to even wash it…..…….then take a dip in the pool………….I would just hold him and hold him and hold him……never ever letting go……I would find a tractor….and sit him on my lap so that he could see over the steering wheel….I would let him drive around the pasture…it wouldn't even matter if we leveled everything in our path....we could fix it back later.....I would take him to see the chickens….he was always amazed at chickens…..I would wake up the girls…..they would surely think I had lost my mind….but I would tell them to jump in the car….. “Where are we going, mommy?” "I don’t know….but I’m not stopping until we’ve seen it all"…….I would make them all peanut butter and jelly sandwiches….I would mix the peanut butter and the jelly together in a bowl….and then spread it thick on soft white bread….careful to cover even the very edge…..I would find a blanket and put it right in the middle of the back yard so we could all just fall back and look at the sky trying to find all the cloud animals...……with a mouthful of sweet "ice-keem" dribbling down our faces....….If I could just wake up and find that these past few years have been just a terrible nightmare….I don’t know what I would do……I think I would just hold on so tightly to my children…all of them…..and never, ever let them go…..Wouldn’t that be nice……I would probably never waste time sleeping again.....

Take care. ~L

Sunday, June 4, 2006 9:31 AM CDT

So much is going on. Me Fine is sprouting new blossoms….flowering all over…..This year has been good to us…The Hope Shop is prospering in Princeton…We still need your donations. Please call us or stop by……We definitely need your support……….Many of you have asked how you could help……here’s a perfect opportunity…..Bring us your good, used items……We’ll take anything……Thank you in advance….We’re thinking about opening a second store in Kenly….Anyone have cheap rental space in town….or thoughts about the potential of a store in that area??? We need all the help and advice we can get……..

I’m back to spending weekends at the beach……The girls and I are so excited that school is almost out……3 and a half days left!!!!! I love summer time……I enjoy the freedom….no schedule, no homework, no commitments!!!! I do much better, mentally, with the regimen that school requires, but I think I can deal with it, just to have some time to slow down and enjoy all that’s around me…….

Just a few days ago, I was sitting by the pool talking with a good friend. I was telling her how hard its been to get money to keep the families covered…..We get in almost one new one everyday. Each one needs more than we have, but somehow, we provide. Anyway, she made the comment that everyone was so supportive in the beginning but it seems people have forgotten and interest has died down…..Ugh! I can’t accept that. I’ve been there and have witnessed what goes on…..all the critical decisions a family has to make daily……all the sacrifices, grief, heartache…….I can never forget what I’ve seen….and I’ll bet there are hundreds of other parents out there just like me……..I’ll bet Cindy Schecter will not forget…….Matthew is nearing the end of his 3 year treatment for ALL….I’m sure its bittersweet…….So many side effects, complications….so much uncertainty for the future…….I’ll bet Cindi Baker hasn’t forgotten……Kara has recovered nicely from her treatment for neuroblastoma but her dad just lost his life to myelonoma. He was a very young, healthy man who watched his daughter fight for her life…..as soon as Kara recovered, Greg started his own battle…….and lost. I’ll bet Sharon DeLaney hasn’t forgotten. I saw her recently as she stood over baby Maci’s grave under a beautiful tree in a cemetery in Clayton. Has Ryan Smedley’s mom forgotten, or Alex Johnson’s family? What about T’s mother or Frannnie’s…..What about the 1 in 600 families right now, who have children with symptoms that can’t be explained….with an unspeakable diagnosis pending……What about the parents who just found out today that their children are now part of a growing number of kids with diseases that once seemed only possible in their worst nightmares………and families who have been in treatment for weeks, even months…..with no end in sight……What about the families who have been battling these terrible situations while losing everything in the process…….???? I wonder if they’ll ever forget………..I’m sure we have saturated our community, our friends and our local businesses with requests for help with assisting these families….but its that important…….I promised them I wouldn’t forget…and I won’t….regardless of what everyone else decides to do….I know there are enough people with me in this that, with a little determination, we’ll be just fine. I keep hearing about the wonderful telethons and radiothons that provide hundreds of thousands of dollars yearly for the kids at the hospitals…..but the hospitals call US because funds are not available for the families or the funding has been cut so sharply because the event money is needed elsewhere…….WE won’t forget….never, ever, ever….

Personally, things are going okay….I have been worried about Folden III for a couple of months now….I don’t know if its grief or what….but there are times when I don’t even recognize him………This weekend, we decided to come to the beach…just the two of us….I think he’s on the mend……He seems to be trying very hard to get it all back together………He’s a strong person….He held me up for so many months….maybe he just needed a mental break for a while…..Regardless, I’ll be right here beside him….better or worse.

Wilson, too, has not been herself. She stays stressed out over school and just life in general………Sometimes, I think my family is falling apart…….I look around and see what the past couple of years has done to all of us……..and I just cry. I know we can carry on….we just have to hold on tight and keep moving forward through these rocky times….It will make us stronger as a family….and more compassionate for others who need a hand now and then.

I think, all in all, things are going along as expected. Life throws us curves all the time……hills and valleys…….It was always a given that my family and I would have stuff to deal with…….You don’t go through something like losing a son/brother and never have to look back…..unaffected. Actually, doesn’t everyone have something going on? …something that requires strength and faith to get through??? Tomorrow’s a new day, full of possibilities, full of hope and promise…This is our life, we might as well live it to the nth degree while we’re here…..

Take care and have a great day! Please, please take a second to sign the guestbook while you're here....We still get over 100 visitors a day and it would make such a difference to know whom else hasn't forgotten. ~L

****Lisa adds the following:

We have a family that needs to sell their car. It is a 2005 Volvo SUV with very low mileage...all the bells and whistles. All she wants is for someone to take over her lease payments. For details.....call me.

Tuesday, May 16, 2006 9:34 PM CDT

Today, when I got home, I sat on the bench outside and watched my kids play. Wilson and Anna Gaites were swinging, giggling and enjoying this beautiful Spring afternoon…bare foot and covered in dirt and leaves. I watched each one, side by side on the swings. God, they are so beautiful…and amazing. I love those girls. Each one is different….each one with their own characteristics and personality. I just sat there and watched them….Its unbelievable they are mine…..all mine.

This week, we have opened our newest Me Fine venture. The Hope Shop is a quality thrift store located in downtown Princeton. We carry about every item known to man….all at rock bottom prices. We have men’s and women’s clothing, children’s clothing and accessories, furniture and interiors, jewelry, shoes, and the list goes on. We have been open for 2 days now and have successfully sold enough of our stock to cover the rent for a month!!!! Our grand opening is this Saturday….I am loving this store…..People in Princeton are incredible. People come in to look around…they come back the next day with a friend, just to show off what we have to offer. Everyone calls me “shug”….I have already started a list of specific requests…..Please think about donating your gently used items to the Hope Shop….I don’t have to tell you where all the profits go…..and your donations are tax deductible as allowed by governing agencies…..Right now, I need about everything….and I’m also on the lookout for Jr. Girlscout items….books, uniforms, etc….We need items in good condition…no tears, spots….no broken items……..As always, we strive to be the best…..Donations are accepted during business hours…..Tuesday through Friday from 12-5.……Saturday from 8-3.…..We will issue a receipt for your records………Just yesterday, a lady stopped me in the street to ask me about donating….We talked for a while and she began to tell me about her great nephew who had died last year with Hurlers. He was a Duke patient. The more she talked, the more the story sounded familiar. Suddenly, I realized who the little boy was….I said, “we’re Me Fine……We were there for your nephew and his family“…..She nearly choked up….She said, “Shug, you helped my family so much….I even remember the flowers you sent to his service…I don‘t know what would have happened without your help”…….I was so proud to be a part of Me Fine….even though it was Lisa who assisted this family….She became very close to the father as he was the primary caregiver….I remember her tears when she told me we had lost this precious little boy………Earlier in the day, a mom came in with 2 little boys….I was explaining who we are and where the proceeds are going. She told me she was the mother of 6 children….2 had been lost as babies from birth defects….2 more had been killed by their father who was driving drunk with them in the car…….Devastating! She understood my grief….and I understood hers….although the circumstances were remarkably different….the loss of a child is an endless ache…..Folden’s picture hangs regally on one of the walls in the shop……it helps keep me focused. Please come by and see us………..We have some really great stuff………and more on the way!!!! Judy Gossett, our resident jack of all trades, has been instrumental in getting the store in good order….Her and her two precious daughters have organized the shop and arranged it in such a way that is easy to shop…..Josh, Jill, Matt, Rob, Gee Rose, and I have been painting, repairing, dusting and cleaning…..You guys are my heroes! I appreciate all of you who have made donations already….We still need baby items, bedding sets, boys clothing, furniture and about anything you have to spare…..

The Golf Tournament organized by Holland’s UMC was a great success…..All proceeds were donated to Me Fine….along with funds from their Wednesday Night Live….Amazing! Thank you ALL…participants, organizers, sponsors and anyone who did any little thing to make it all a success. I also appreciate the graciousness of St Andrew’s over in Garner…They allowed us to tell our story and made a very generous contribution….and commitments to support us whenever possible…….What a fabulous group…..Rhonda Allen just donated a crib for our precious Kian…..What would seem like a simple donation of an unused crib is much more for this particular family. Kian’s treatment has caused him to fall behind a little…developmentally…..His “new” crib gives him an opportunity to pull up and “walk” around in a safe place….What a difference for him, already! His therapist is impressed with his achievements. (Kian’s mom has given us permission to use their names…)

We have a new family in from Michigan. There is no link at this point but you can imagine…with them being so far from home, the needs are great. Cary First UMC has filled their freezer, already…..Good job!!!!

We will continue to raffle our Tim McGraw/Faith Hill tickets donated by RBC Centura through the week….We are still being allowed to work the local race circuit….Check out the times at www.southernational.net. The winner will be called at the race but can be purchased either at the race or by calling our office.

Lisa Valentino, our director of development, has made it possible for us to now accept pledges on a regular basis….We can do checking drafts in any amount up to $5,000.00 per month, semi-annually or annually. You can choose the 10th or the 15th of the month. Lisa can meet with you to set up the donations. Please consider pledging to Me Fine. We’re worth it!!!

Gosh, we’ve been busy….Lisa Brown and I met with a few of the coordinators at UNC….It was amazing to hear what they have to do to get funds to help these families….The doctors, nurses and social workers seem to spend a lot of their own time trying to find ways to raise money so they can assist families with things like parking, meals and temporary housing……I wonder how they can treat these kids when they have to spend so much time fundraising…..So much of their funding has been stripped….resources are scarce….The dedication to their profession is so admirable…..My hat is off……..With all the telethons, radiothons……and very generous contributors to these hospitals, you would think that family assistance/support would be the first place for the funds to be used………

Lisa Valentino is also working on her first official fundraiser…..She is going to host “Southern Ladies Purse Exchange”……….unique purses from around the country are being donated for auction….Attendance is by invitation only….please contact Lisa to be included………. Mefinedevelop@aol.com……..It should be so much fun…….More is involved, this is just the preliminary highlight……

Please continue to pray for Cindi and Greg Baker……and Jashaia…www.caring bridge.org/visit/jashaiasjourney…..Mom is wonderful…..a pleasure to get to know……..Kian is doing well…….Pray that he will continue to improve and be able to leave the hospital as scheduled on June 10

My heartfelt gratitude to all of you for your prayers and continued support………..I love you all……….~L

Wednesday, May 3, 2006 10:15 AM CDT

Hi again, it’s Lisa B. updating for Lori. We want to let everybody know about all the exciting things happening at Me Fine!

Lori and I were invited to the Ham and Yam Pageant last Saturday. To put it simply, we were amazed!! The girls, from age 8 months to 33, were absolutely beautiful inside and out. This year, Deborah Rosenburg, the pageant director, selected Me Fine as their community service project. The girls raised over 3300.00 for us!! Isn’t that wonderful? We are so grateful to Deborah and her girls for all their hard work and efforts.

Me Fine will soon be opening The Hope Shop, a quality thrift store in downtown Princeton, NC. We will be in the building that used to be the offices for the Princeton News Leader. The address is 115 West Edward Street. We are hoping to open on May 15th. Please donate your gently used clothing,furniture and toys. We want our reputation to be as a quality, upscale secondhand store. A place where everyone will be comfortable shopping! Items can be dropped off at the Me Fine office in downtown Clayton or at the store in Princeton.

I would like to thank Deborah Rosenburg for her help with The Hope Shop. I know that many of you know Deborah from The Town Shop in Clayton (near Talecris). She has donated all the fixtures that we will need, including display cabinets, and has her pageant girls collecting nice clothing for us. The Town Shop will also be donating NEW clothing from last season to get us off to a great start. That should enhance our UPSCALE image, right? Please go by and see Deborah at The Town Shop and see all the beautiful clothing she has for sale there. Here’s a secret…she is having a huge winter clearance…lots of markdowns. It is hard to beat the quality and beauty of the clothing they sell…and on sale??? Well, that is a opportunity that can’t be missed! Please tell them that Me Fine sent you!!

Do we have any Tim McGraw/Faith Hill fans out there?? We have a pair of tickets (valued over 100.00) to raffle. Our friends at the Southern National Raceway are allowing us to sell raffle tickets at three of their races. Please come on out and support them (and us) May 7th, May 13th and May 21st and buy raffle tickets for two tickets to the June 9th Tim McGraw/Faith Hill, Soul2Soul, concert at the RBC Center in Raleigh!!! For those of you who cannot get out to the raceway, call or come by the office and buy your tickets starting Monday, May 8. Raffle tickets are only 20.00! Please visit Southern National’s webpage at www.southernnational.net.

I want to thank all of our friends for the concern and compassion shown to the family of our little friend, Micah (www.caringbridge.org/al/micah). As many of you know, Micah earned his little wings on Sunday, April 23rd. I can’t tell you how proud it made all of us at Me Fine to read his guestbook and see so many entries from our friends and supporters! While Micah’s family was in Durham, many of you donated food and other items to help their family. It was so appreciated. Please continue to pray for Micah’s family as they go through this difficult time.

Please continue to pray for Greg and Cindi Baker. www.caringbridge.org/visit/gregbaker and Jashaia www.caringbridge.org/visit/jashaiasjourney.

Also, little Maci Donleycott, www.caringbridge.org/nc/maci, is back in the hospital at UNC. Please pray for her and her family and sign their guestbook!!

Thank you so much for everything. We love you! Lisa

Thursday, April 20, 2006 10:48 AM CDT

Good morning…..It is such a beautiful day……The sun is shining….a cool breeze flowing through…….A hint of summer-time is all around me…..Its spring break for us and we are cherishing every single moment……The girls and I left for the beach as soon as all the Easter parties were finished at school…….We have 3 more days before we have to go back…….Then the count down to summer break begins………I just can’t wait…..Spring break always makes me want to rush those last few weeks of school…No more early mornings…..no more homework…..no schedules……no shoes……Just fun and sun…………Ahhhhhh! It can’t come quickly enough……..The girls are doing great…..enjoying the days as much as I am……..Wilson still has her bouts with sadness…..she takes everything to heart….feeling each emotion so deeply……I still worry about her…..but I feel as long as she talks about what’s going on in her head…..then we have promise. Anna Gaites continues to let things roll off her like water on a duck……..but now and then it catches up with her…….its much more difficult to work through things with her…..partly because her immaturity prevents her from knowing how to express her feelings……and then she sort of adjusts things in her mind before she can tell me what she’s thinking……Its hard to get to the root of her thoughts….They are so different……..and I love them immensely…….I know if it wasn’t for them, my life would be worth so much less……They teach me something new everyday.

Me Fine is prospering……..Lisa and I stay on a high most everyday…….amazed at what is happening around us……I am so honored to be a part of it all……..When I left you last……I had just taken a trip to Disney with my family…….It was nice. I did absolutely hate the flight…….(first time for me and the girls)………but I promised myself when we were at Duke that I would face my fears head on……..If Folden could endure what was thrown at him…….then certainly I could fly………and I did it……..I still don’t believe it……..I’m sure it sounds like nothing to you……..but I will be 40 this year and I have never even seen an airplane up close……..It was a big step for me to release that much control over my life into the hands of someone I don’t even know……..Believe me though, I was checking those pilots out…..head to toe…..looking for any sign that they might not be capable of getting me and the girls from point A to point B….safely. I wondered if they knew what precious cargo they were transporting…….Ugh! The flights were not even close to what I expected……..I think I watch too much television……Folden laughed at my ignorance of basic flight protocol……Glad he enjoyed it…….The girls and I seemed like the Beverly Hillbillies in Hollywood. I’m sure we were quite amusing to those around us……I met several nice people in the seats beside me….So many life stories……It all makes me feel so small.

I was so happy to get home. 8 days is just too much for me to be away. I wanted to sleep in my own bed, pet my dog…..see my mom and the rest of my family…….I enjoyed the whole trip…..Disney is such a wonderful place……the water parks were awesome…….MGM, Animal Kingdom…..it was all fabulous……..but there really is no place like home……..I kept thinking the whole time how one man’s idea has blossomed into what we see today…….Everyone certainly has purpose on this Earth.

When we finally got home, I had to hit the ground running…..Our fundraiser, “A Tribute to the Legends” was just 3 days away…….Organizing those things is not as easy as we make it look……..Keith Henderson, an Elvis illusionist, and Diane Bailey, one of our strong, local talents, performed an amazing show…….The place was packed and I think everyone there enjoyed themselves……Clayton Fitness and Curves for Women in Smithfield hosted basket raffles sponsored by Le Gourmet Chef/Carolina Premium Outlet Centers………We had vendors at the show, including Spaghetti Legs‘ beautiful custom made quilts, Charlie Brown’s wood working, Judy Gossett and her spectacular jewelry and BeetleNut, Inc with her custom embroidery….(Links to some of these are on our website…..I was so happy to be able to see the work first hand……The embroidery is nothing like I‘ve ever seen…..and the quilts are breathtaking)…....They all donated a portion of their sales to Me Fine…….Keith Henderson and his family even donated 20 percent of their merchandise sales to us…….plus donated a bag of Keith’s promotional items for us to raffle…….We had 54 pages in our program this year….so many generous sponsors purchased ads, we had 10 times what we had last year!!!!!….and PIP Printing out of Cary donated all the printing for the programs….!!!!!!!…….Johnston Community College’s auditorium staff was awesome, too…….It took a lot of hands to pull that show off and make it profitable……….Great turnout…….!!!! We were so pleased…….We did encounter a few glitches, but all in all……it was a great show…….I really appreciate everyone who helped out…..

So, you would think that our funds are back up from the proceeds of such a successful show. Well, it certainly helped but before I could get all the totals written in the checkbook, it was all gone………We have so many families needing assistance…….With that money, we purchased a car for a family…….caught up another family’s living expenses that were nearly 3 months behind……and then sent yet another family to Hershey PA as part of a last request from a 13 year old boy who has been battling liver disease for some time……The doctors thought a liver transplant would save him but during the transplant, they found he was too far gone…….His time is limited and we wanted to do whatever we could to make his last few weeks as enjoyable for him and memorable for his family as we could……We sent them all to Hershey with as many bells and whistles as we could come up with…..Thankfully, there were many generous people in Hershey who helped make it all possible……..And if you don’t believe in divine intervention, you should hear Lisa tell the story of how that all happened……Basically a random email asking for contacts in Hershey was inadvertently sent to a gentleman who was, at the last minute, sent to Hershey on business……He was staying with a family…..one of the family members had an office right next door to the PR person for some of the Hershey attractions…..The kicker??? The gentleman had been through a liver transplant himself……AND…the boy‘s “end of life“ medications had been sent to him personally, by mistake…..we called shortly afterwards to tell him he was on his way to Hershey……It didn‘t make the pain of knowing he was considered terminal any easier, but it did redirect his attention from something so horrible to a brighter place……...You have to hear Lisa tell it…..When she called me to update, she was breathless…..Now, tell me there’s no God.

Now, we’re back into hunting for funds to keep us going….Its never easy, but always worth it. Yet another divine intervention…….I have added Lisa Valentino to the Me Fine Staff……..Lisa was previously an account manager with RBC Centura in Clayton…..So, one would think that a small, nonprofit couldn’t possibly match her salary and benefits……..Well, in that respect, you’re right……However, Lisa has been following my family’s story from the beginning….she has two healthy little boys of her own and realized that maybe the salary and benefits of such a prestigious position could not make up for the time she had to spend away from her little boys and her husband….So, I offered her an extremely flexible schedule and a chance to make a difference for families across the United States who come here to get treatment……..The pay is not that great, but with those benefits, who could pass it up……..Fortunately for us, Lisa is now the Me Fine Foundation’s official Director of Development. She will be responsible for securing corporate and individual contributors….She will also help us in raising awareness to the crippling and life changing situations these families face. She has been on staff now going into her second week…….she is doing great…..I am so proud to have her……You know what she did on her first day???? She went home and made a real dinner for her family…….Money isn’t everything! (If you have referrals or could line up a chance for her to make a presentation, email Lisa Valentino at mefinedevelop@aol.com ….you are going to just love her!!!)

Let’s see…..What else…….Lisa Brown is organizing a fundraiser for June 3rd…..it’s a coffee house setting, including a showcase of local talent……Email or call Lisa (919-359-2030 …. Mefinefoundation@aol.com ) to help out…….we need door prizes, sponsors, food and many helping hands……..Our friends over at Caterpillar/Clayton are on board……should be a lot of fun…….Help if you can!

A Fishing tournament is being held August 26th and 27th…….My lovely husband and Goose Creek Marine are organizing the event……We have a boat raffle also…….tickets are $100 each……(I think the boat/trailer is valued at well over $10,000)…..There will be a cook out, raffles, auction……entertainment…award ceremony……all down here at beautiful Atlantic Beach……….As soon as I can hold Folden down long enough, I will have more info…….just email me if you are interested……..We need volunteers, as well………it’s a good excuse to come to the beach and fish…….If you need notes for your wives……let me know!!!! Its for an extremely important cause……

We are now a part of the State Employees Combined Campaign (SECC)!!!!!!!!!!!!! It was voted UNANIMOUSLY!!!!!!!!! All state employees, please remember to choose ME FINE!!!!!!!!!!!!!!!!!!!!!!!!!!

Yard Sale this weekend at Folden’s office….5400 Barber Mill Road, Clayton. Judy Gosset, poor thing, she catches all the over flow from Lisa Brown and me……She is such a trooper…..giving up her Saturdays to make sure we have everything in order….She does it all……Unbelievable…..another favor from upstairs!!!!! She and Rose, (GeeRose) are hosting the yard sale on Saturday, April 22nd……..Stop by!!!!

Holland’s UMC is hosting a golf tournament and all proceeds go directly to ME FINE……May 6, Riverwood Golf Course, Clayton……Email Judy at info@mefinefoundation.org to get involved……We need this to be a HUGE success……..

Don’t forget Christmas in July…….Me Fine is going to take a trip to the hospitals to brighten the day for the kids……We’ve done this before and its such a blessing to be a part of it……People like to remember the kids in December, but the rest of the year, events like this are a little sparse….We have one great Santa and one great Elf already signed up……..We need MORE!!! No Santa suit needed……(Santa is on vacation and only stopping by to say hello during his down time!) And all you churches, businesses and civic groups……here’s your chance to make a difference…….We need NEW toys…….and lots of them…….Start a collection drive now……If you need flyers to get your patrons or neighbors involved, email “guess who”……..Judy at info@mefinefoundation.org or call our office……919-359-2030.…….

We are starting our Change Exchange Program…..We are working on donation containers to be placed in businesses and any other place where people can drop their change…..we will exchange the change for items needed for the families……Yep, call Judy to get on board!

New web design coming soon………It is awesome!!!! (www.mefinefoundation.org)

Now to our specific, immediate needs…..

Always money, gift cards and gas cards!

Office supplies…..paper, pens, printer cartridges

Items for out-patient bags…..Clorox wipes, paper towels, anti-bacterial soap……email Lisa Brown for a complete list!

Yard sale items can be dropped off at Folden’s office through Saturday morning, (4/22)

A car for one of our families who is trying desperately to get on her feet after a long battle with her son……..son is doing well, but this single mom needs a very dependable car so that she can go back to work!!!! She is getting discouraged, but we’re going to stay with her, hand in hand, and see her through!

PRAYERS!
Micah……....link below.

Maci, who is doing well and at home!!! AMEN! link below.

Jashaia ……www.caringbridge.org/visit/jashaiasjourney

Greg Baker……Please send Greg’s site out to your prayer groups, prayer chains etc…….He and his family need a mighty healing hand. www.caringbridge.org/visit/gregbaker

Nikki Shingleton…….pray for strength as a mother and continued health for her son.

Lisa is taking lunch to Duke PICU today……..she is also able to take donated items to 5200 thanks to the continued support of Hollands UMC….Rhonda Allen, Kingdom Kids….thanks a million! Pray for Lisa’s safety as she makes yet another visit to our families……..

Thank you all for checking in……All my love…..~L

Tuesday, March 28, 2006 9:33 PM CST

Hello everyone….I know its been a while……Lisa has done a great job keeping everyone updated on what’s happening in Me Fine land. Folden, the girls and I are all in FL….enjoying the wonderful world of Disney……..Its been a great trip….but I’m ready to go home…….I guess all those months of HAVING to be away from home have made me really realize, there’s no place like home….not even Disney……..We have seen it all, though……The kids have had a ball….We’ve allowed them to call the shots, doing whatever they want to do…….and actually, if you ask them….they would probably say the tickle fight with all of us and Aspyn and Alexa was probably the most fun……The weather has been nice…..a little cool but perfect weather for walking the miles and miles it seems to take to see everything……Our flight leaves first thing in the morning……and it can’t get here soon enough……I have had a wonderful, spectacular vacation……but I’m ready to see the rest of my family and sleep in my own bed….I did accomplish one major goal…….I flew for the first time……I hated it, but I did it without freaking out…….

Okay….Me Fine news……..The 1st newsletter went out, thanks to Lisa and our grand volunteer, EJ……..If you want to get on the mailing list, let me know…..or if you’d like to send a few out to your own friends, just to help spread the word, let me know that, as well………..Keith Henderson and Diane Bailey perform Saturday night……April 1st…..Tickets available……….and we were also given 2 tickets to see Faith Hill and Tim McGraw at the RBC Center……..We will probably raffle them, assuming we get an okay from our “legal department”……….Big news!!! Lisa Valentino, formerly an account manager with RBC Centura, has joined the Me Fine team as our Director of Development…Lisa V. will join Lisa Brown and me in the Clayton office in just a couple of weeks…….We feel extremely fortunate to have her on board…..certainly divine intervention to have someone with her professional background and personal conviction to help us gain corporate sponsors, donations and monthly/yearly pledges………Its amazing!!! Lisa Brown will continue to directly assist the families and organize the volunteers….among other things and Lisa Valentino will help us raise awareness and funds to continue our family support…….With these two incredible women, I may be no longer needed……Hmmmm.

One last thing…….I realize that people get tired of hearing about the needs of charities…..money, money, money…….buy tickets, contribute to this, donate to that……..pity, pity, pity……..help, help, help……….I completely understand……This afternoon, I was sitting by the pool watching the girls play in the water, carefree and happy……..I first thought how grateful I am to be their mother……..God could have chosen someone else………but thankfully, I was blessed with 3 amazing children and 2 are still here with me………then, I looked around at other parents…..and I wondered if they had any idea how fortunate they were to be able to watch their children fully benefit from such an experience as Disney……..all the magic, all the wonder……..and how many children ask Make-a-Wish for this very same trip………..I thought, man, if people could just see what just a small contribution could do….it wouldn’t seem so difficult……Just as all these thoughts were going through my mind…..one of the girls tossed a piece of pretzel over to a bird…..He gobbled it up and made some odd noise and as Anna Gaites tossed the second piece, more and more birds started landing around her to get the food……Anna Gaites and Wilson just loved watching the birds up close……bickering with each other over the few bites of food………And as always, I realized God was trying to show me one more thing……..The first bird didn’t land, grab the food up and fly away………..He called his friends to let them know there was a food source nearby and if they were hungry they’d better get over here……..He could have selfishly hidden his discovery and waited for the next bite……it could have been all his without having to share………but he didn’t…………I just think if we all share a little of what we have…….no one would have to be without….or in need….

Say a prayer that the plane lands safely....Take care....~L.

Monday, February 27, 2006 5:40 PM CST

Good News!! Framing will begin on Hope House on Saturday, March 4th. We welcome any volunteers, no experience required! Hope House is located off of Hwy. 70 East (towards Goldsboro). Turn right on Braswell Road, go about 3 miles. Hope House is in Logan's Way Subdivision, Lot 12 (115 Joey Circle). Thanks for all your help!

**Update Tuesday 2/28***
We have a single mom who is looking for daycare in the east Raleigh area. She doesn't necessarily need assistance paying for it, but she needs daycare immediately. Her son is recently out of treatment and she can return to work, even has a job lined up, but it all happened so suddenly that she hasn't had time to find daycare. He has no medical special needs or concerns. Please call if you have any information that might help! 359-2030! Thanks!

Hi everyone, Lori asked me to update today...so here goes...Lisa

As Lori and I sat at lunch today, our conversation turned, as it usually does, to Me Fine. We started talking about a “small” donation someone sent last week. I told Lori that I thought that when anyone sends a donation with a note that “apologizes” for the amount, I feel like we aren’t doing our jobs well. We often tell people that it doesn’t take much to keep things going for us. Now, would we turn down a million dollars? No..but is a twenty dollar donation important? Yes, it certainly is. We started talking about all the “small” things we do for families every day….diapers (about 14.00 a pack), wipes (4.00), bleach cleaner (3.00). These are everyday needs for many of our families who struggle to find ten extra dollars when they are supporting two households and huge medical bills. Lori then asked if I would update today and tell you about my little friend, Kian, and how a little goes a long way.

In October, I was called by Kian’s social worker, Susan. She asked if I would visit Kian and his mother, Aleeshia, at the hospital and see if we would be able to help them. Susan warned me, “you’ll fall in love…he’s too cute!” She was right…Kian is adorable. The day I went just happened to be his first birthday. I took a “Peek-a-boo” blocks train. He loved it!! I was thrilled.

Five months later, Kian knows me when I visit, his mom tells me that I’m “part of the family” and that it has been easier to ask for help because of this. They are here from Connecticut…they flew here, so they have no car, no way to get around. They stay at the Ronald McDonald House because of this. Normally, kids from the PBMT stay in apartments close to the hospital but due to transportation constraints, they have been ok’d to stay at RMH.

Kian’s mom calls me often to check in. Sometimes she has something specific she needs, other times, we just talk. When it is something she needs, it is something that you or I would pick up at Target or Wal-Mart…but , keep in mind that she can’t go to Target or Wal-Mart because there is no car and even if she had one, she doesn’t have anyone to watch Kian and he is still immune compromised.

What does she ask me to bring? Baby food, diapers, wipes, nail scissors, toilet paper, orange juice. A “small” donation would cover most of that.

Last week when I went to see them, I took diapers and wipes to Aleeshia and Kian. I also took Kian’s first pair of “real” shoes. His physical therapist needed for him to have shoes to learn to walk in. Again, no way for Aleeshia to get those, she called Me Fine. I also went by to take a sandwich tray from Subway to the PICU at Duke so that the Fleming’s, Micah’s family (www.caringbridge.org/al/micah) and the other families would have food close by to eat.

Am I telling you that everything we do can be done for under 100.00? Well, I wish..but no, it can’t. We have one patient that we are called upon about every other month to pay for her outpatient medications, about 2000.00. There are families who need assistance to pay for the very high rent (over 2000.00 a month in most cases) for an “all-included,” short term lease on an apartment, others that need their home mortgages or rent paid but, I do want everyone to know that we are thrilled with every donation that we get. Everything we do is important and I am incredibly lucky to be able to do it. The families thank me but it is my pleasure to be able to help them. Kian’s mom will always remember his first steps in those shoes and I will always be thankful that I was privileged enough to be a part of that happy memory.

Those of you that know me, know I’ve got tears running down my face….everyone talks about my “tender heart” and I don’t apologize for it. I just simply can’t help it. My husband is pretty amazed that someone who cries during Hallmark commercials can handle the emotions of my job. It is tough some days but I never, ever regret taking it on or wish I was doing something else.

Ok, now, down to business….

If you still haven’t purchased your Keith Henderson/Diane Bailey tickets…CALL ME!! These tickets are selling fast and I’d hate for anyone to miss this terrific show.

I am working on a fundraiser for June. It will be a talent show in a coffeehouse setting. I have some very helpful “assistants” for this one (Thanks, Neil Deasy, Heather Ballance and Kelly Jones) but if you have any good ideas…I’d love to hear them!

Lori is speaking at the Cary First United Methodist Church this Sunday at their 11:11am contemporary service. Thanks to our friend, Jennifer Gilmore, for inviting us! Sunday night, we head to Pikeville to visit a women’s group from Antioch Church.

Thanks to everyone who has sent donations…if you ever want to know what we are doing with the money, please ask. Of course, we have some regular expenses but overall, most of the money we get goes directly to help the families.

Please keep praying for Micah, Kian, Maci and all of our other special kids!

Lisa

Friday, January 27, 2006 7:54 AM CST

A quick update (by Lisa)! Tickets for our benefit show, "Illusions of the King" featuring Keith Henderson are selling fast! Please call the Me Fine office at 359-2030 if you want tickets.

Lori is working on a grant request for Me Fine Foundation from Dr. Phil. We feel that it would help our chances of getting approved if we could show just how much community support we have. Please email Dr. Phil and tell him why you think we deserve his money! Ask a friend, too!

Please remember to pray for Maci (www.caringbridge.org/nc/maci) and her family as they head back to UNC for further treatment.

Also remember Greg Baker and Cindi (www.caringbridge.org/visit/gregbaker)and their family in your prayers.

****************************************

Just a quick update to let you know we are all still hanging in there….I appreciate your beautiful comments in the guestbook….and the calls and emails just checking in to see how things are going….I can’t imagine facing this stuff without all of you behind me….Here are a few Me Fine highlights….

We still need 15 more people to sign up with your Food Lion MVP card….Call Lisa if you have trouble online…..

Keith Henderson and Diane Bailey will be appearing once again at JCC….Keith is a fabulous Elvis Illusionist and even if you’re not a big Elvis Fan, you will love his performance…..Diane will pay tribute to some of our lady legends….She is such a spectacular performer….Tickets are $22.…The benefit is April 1st……..Ad space is available in the program….Full page, $200...half page, $125.…it’s a really great time regardless of your taste in music….Hope Wright will hopefully be speaking for a few minutes about her journey through Duke with her son Jordan….Hope is an amazing human being and one of the lights that guided my way during our stay on 5200.…We are considering setting up tables for a few vendors…..Call us for more info….919-359-2030.

Don’t forget about the Hope House….donations of time and materials are always needed…..

Our first newsletter is finally in the making…..call or email to get on our mailing list….ad space available….

I will be speaking at Amelia Church in Clayton on February 5th….8:30 and 11:00 services….Please come!!!

Our funds are so low…..Please think about a contribution….It all goes to the families and they need our help so desperately…..We now take credit cards!!!!!

I want to welcome our two new volunteers…..They have sure accomplished a lot in the past few weeks….E J Harrill, Judy Gossett and junior volunteers, Caroline and Gracie Gossett…Thanks a million!

For those who missed the piece on WRAL….check out the clip at http://www.wral.com/video/5329142/detail.html …..

A few special thanks to those who helped us get through the holiday season…We have received so many calls and letters from families who were assisted…..It was amazing….thank you all who helped out…..Through your generosity, our mission was completed…..

Highs and Lows~
Kelli & Scott Jones donated plumbing materials for the Hope House….AMEN
Keturah Wright, the child featured on our WRAL piece recently earned her wings….Please pray for her family….
We continue to assist a family with the cost of their child’s oral chemotherapy medications….The total went up $400 in January…..costing $1600 per month….Please help!
Please pray for the Donleycott Family… www.caringbridge.org/nc/maci
Please continue to pray for the Baker family….They have been hit especially hard…. www.caringbridge.org/visit/gregbaker (Dad) www.caringbridge.org/nc/kara (child)

Christmas families...we helped 13 families overall......
Contributors include:
Adesa Impact
Furnishing Solutions
Debbie Clapp and family
RBC Centura
Stoney Creek Church-Pikeville
NC DOT Division 4, especially,Karen Norfleet in the Wilson office
Jennifer Weisner and family
Parker Appraisal Group donated new shoes for an entire family
NC DOC (Dept. Corrections, Kelly and Joni) 2 families
Melissa Austin
Rose, FW, Tammy, Blake Lee
University Orthopaedics and Sports Medicine
Hog Slat in honor of their owner/managers
Wal-Mart of Clayton
Caterpillar-Clayton
Talecris
The women at Stoney Creek FWB in Pikeville
Stephen Creech, S&R Lawn Care….Laptop

On behalf of the families who had a wonderful Christmas....we are sincerely grateful for your help in making it all possible!!!!

You think that what you do is just a mere drop of water in the ocean....but without that drop, there would be less water.....Mother Theresa

Tuesday, January 3, 2006 0:10 AM CST

As each week passes, I know in my mind I need to sit and write….just to clear the jumbled thoughts in my head….but the words never seem to come…Oh, I have written page after page….all deleted because none of it made sense, even to me………...All the thoughts keep creeping in, flooding my mind with so much emotion….emotion that I still haven’t learned to process…..

I sit here tonight, praying for sleep to come…but I know its no where in site….A storm is passing outside…..I can see the lightning flash and hear the crashing thunder….As I look outside, I can see a glimpse of what I feel inside….rain pouring like the tears I wish I could shed….tears that have been building up for quite some time…..dark clouds floating aimlessly through the night sky….I understand it all….the darkness, the rage….it is all so familiar…..

I must be transitioning into the next phase of grief….For so long, I never allowed myself to actually realize…or maybe admit, that he’s really gone….He’s really gone….The little boy that made me smile even on the worst days….the little angel that held my face with both hands, just to give me a kiss…..my soul, my breath….my heartbeat…..I think my mind is finally beginning to understand the loss…the devastation….the emptiness that his absence has caused…..What I feel is even more intense than before….more unbearable and raw than I could have ever conceived…..I try to cry….but those tears have been guarded for so long….I think if I let one small drop of pain escape….it will be over for me…..the tears will flow like the rain coming down against my window….and they will never stop…..

I see him everywhere I go….I see little boys everywhere….tractors, “Nemo”….”Bob the Builder”…..cowboy boots….I feel his absence everywhere I go….”What a nice time we had at the beach…but Foldie’s not here”….”That was a great movie….Foldie should be sitting right beside me….”………….Its all madness……….insanity, craziness………

I want to go to the next level….I want to go forward….I am ready physically….but the pain of accepting what has happened is too real…too intense…..like holding my hand to a red hot fire….even though I know, as soon as the pain stops, I can take the next step….but the pain is unbearable…..It hurts too much to accept that I will live the rest of my life on this Earth without him….I just don’t think its possible…..I don’t think there is enough strength………

I have videos of Folden when he was well….when he was just a normal little boy….Oddly, I have never seen any of them……..I know that as soon as I open that door, there is no going back…..I must admit the loss….I must accept it as reality………At this point, I can squash those thoughts….somehow fooling myself into thinking that maybe it was all a dream…a really bad dream and any minute, I am going to wake up and Folden will be curled up beside me, safe and sound….no lines, no pumps or infections….no hospital, no such thing as a sick child….no terminal illnesses, no rare diseases….all the children will be curled up next to their mothers…safe and sound….no fear, no pain…..

Sometimes, I try to cry….I stare at his pictures around my house…I see his dimples….I notice every little thing….I try to memorize each little hair on his head, fearing that somehow I will forget some small detail of his existence….As soon as the tears start…I quickly gather myself together and change directions….Its like standing at the top of a mountain…ready to jump…..but once I look down, I know I can’t find the courage….Its just too far to go………

Am I losing my mind??? Maybe. Sometimes, I spend my time just counting the days until I can see him….his world…his new life….Other times, I drown myself in the moment….I soak up the sound of my daughters’ voices…giggles, “mommmmmeeeeee”, “can you fix this for me”…..or I lose myself in the strength of my husband’s hand….the smell of his cologne….I can look around and see how truly blessed I am…..I have the ever presence of my family….the constant force that carries me….my safety net….but all the pieces are not in place…..the picture is no longer complete…..I remember when Folden was born…I knew he was the one that made us whole….He completed our beautiful family….

Certainly, it seems I am in a very dark place….but actually, this is where my mind stays….Nothing makes it better or worse….nothing changes the direction of my grief….not good days or holidays….bad days….nothing….It is always present…this feeling…this emptiness…I guess it is a feeling that I will work with….maybe even become accustomed to as my life continues….as the journey moves forward…This is my handicap…the thing in my life that I will have to find ways to help me carry on, in spite of.

One would certainly wonder why I keep revisiting the world that took my son….the world of childhood disease….that dark, scary place that so many of us have had to endure….I suppose it would seem better for me to run, escape from the demons….but I can’t. I have to face those monsters head on….I have to do what I can to make it better….it’s the ONLY thing that helps me to feel worthwhile….The feeling I get when I know a family has been truly helped….its amazing. To see the relief in a parent’s face….to get a smile from a child….that is the ointment that helps ease my wounds….It is a feeling that nothing else can create….I know my place….I know why it hurts so much….Because of the pain and grief, I have to do something worthwhile….I have to do something to ease the pain of another person….No, I don’t do it alone…There are a hundred hands making it all possible….at least a hundred….It has become my drug….and obviously the drug of many others around me…

I continue to look for ways to make a difference in this world….No, I am not that great of a person….Its just self preservation….The more I can do to help, the better I feel….We have all even talked about fostering or adopting children…..I have said before, anytime God wants me to do something, he puts it right in my face….lately, this one has been smeared all over me…..The girls think that we have plenty of room for another child….maybe not a baby….so many wonderful families are desperately trying to become parents….and healthy babies are so hard to find….I think it would be selfish of us to take that opportunity from another family…..I have researched our foster system and the adoptable children across the United States………I basically spent my entire Christmas vacation on the web….site after site…..I feel like someone up there will shed some light on the direction I am supposed to take….He always does…..I asked Wilson and Anna Gaites why they felt so strongly about this….Wilson says there are children in the world with no family…..I guess that just about sums that up………We’ll see.

Well, the storm has passed………everyone has found their way to my bed….all safe and sound….I just wish it were that simple…I am thankful that my children feel so safe curled up next to me….I hope they never have to know about all the real monsters out there….the ones I can‘t protect them from…………..…I do look forward to daybreak…It will almost be nice to get back to work….So much to do….Maybe the new fundraisers will help bring my mind back into focus….Maybe God will be gentle with me….maybe he’ll continue to hold my hand until I can see him in person……just maybe……….L.

Wednesday, November 16, 2005 9:03 AM CST

Clarinet needed for Duke Child!!! Sibling Donor....Call us if you have one to spare!!! Needed ASAP!!!

Good Morning!! Just a brief update to let you know how things are in Me Fine world....

The American Music Jubilee put on an outstanding performance at the Rudy over the weekend....The benefit was very profitable and I sincerely appreciate all of you who were there....The proceeds from the show are in the process of being distributed at this moment....Many families feel hopeless right now....Isn't it a good feeling to know that help for them is on the way.........!!!!!

We are still working on our "Adopt a Family for Christmas" campaign......Many families have used all their resources in trying to secure the needed treatments for the kids.....A little help/hope during the holiday season will be a blessing and a relief for them....

If you would like to help us during the holidays but can only spare a little......that works, too!! We need the following low cost items....

Digital Themometers
Wendy's gift certificates or coupons
Hardee's gift certificates or coupons
Phone Cards...any amount
Wal-Mart Cards...any amount
Target Cards....any amount
Food Lion Cards...any amount
Portable CD players with headphones....(Usually around $10)
Clorox Wipes
Antibacterial hand soap....pump
small 6 pack coolers
Trash cans with lids.....pedal operated
Kitchen trashbags
Paper towels
Diapers
Rolling storage drawer units....Rubbermaid type
Disinfectant...like Clorox Cleanup
Toiletries
Laundry detergent
New toys....still in packaging
New kids clothing and pajamas
New queen sheets/pillowcases....white
....and as always~MONEY!!!!

The Hope House is up and running.....We FINALLY secured the brick mason......He should finish this week.....We are working on donations for the framing materials....... Framers are in place and ready to go.......

The materials for the Four Oaks family are being delivered to the home this week!!!!!! This project has been so much harder than I would have predicted.......We remodeled a complete home in Greensboro....I didn't know anyone there nor did I have Greensboro area resources.....but by the grace of God, and a few good people, Queen and her family live in a beautifully renovated home............One would think a 12X16 deck and a handicap ramp in my own community would not be a problem.....After nearly 3 months, we have finally gotten to the point that we can begin construction!! Mike Bridgers, a teacher over at South Johnston High School...and Builders' Discount Center in Goldsboro have agreed to provide the labor and materials so that this little boy can finally come home.....He has been in treatment for a long time....with tons of complications....Can you imagine the feeling for him to be home for the holidays.....We all take so much for granted...Thanks Mike and crew and those awesome folks over at Builders' Discount....I know that someone from WAKE county contacted BDC even before we did.....I appreciate your effort so, so much!!!!

We are still providing the chemo for the little girl at UNC.....$1200 a month......

A local Wal-Mart store is going to donate their overstocks......We will soon be getting weekly shipments of NEW toys and household items........If you are interested in shopping at our newly developed Me Fine Outlet....please give us a call......Prices will be beyond reasonable and all proceeds will go directly to the kids.....What a great way to Christmas shop this year.....!!!! We are organizing a couple of "remote" locations in the Clayton area.....Gee Rose has even offered to fill a friend's motor home with merchandise and pedal it around to various locations....What dedication!!!!! Some of the items will be given to the families....but since this will be an ongoing project and money is desperately needed to fulfill our committments....we are going to put many of the items out there for you......Win-Win!!

Keith Henderson tickets on sale now.......Advertising in the program is available.......Join in and make this our most successful show yet!!!!

We are still looking for a miracle.....Eventhough the AMJ benefit was a great success......we have more needs than money.......We can't stop now.....too many families are counting on us to help them through.....many other families are on the way.......Our funds are very limited right now and we are praying heartily for a shower of good luck......If we've ever needed a miracle, it is now.......

Check us out at www.wral.com ........ "Clayton Mother Turns Grief into Activism"........There is video of the broadcast available on their website........We were nominated for "Ordinary People doing Extraordinary Things"....Valonda Calloway interviewed us at Duke last week......We were on the air Tuesday morning at 6:40 am and 7:45 am.......thanks to all of you who sent in nominations......Its important to me that you all know one thing.......It may be my face you see out front most of the time.......but behind me is an army of genuinely caring people who are helping me along......It takes all of us and you to make Me Fine the amazing entity that it is.......I do realize how incredible this whole journey has been.....and how much has changed because of a little boy named Foldie Lee.....I am left breathless sometimes when I think of all that has been accomplished because someone took time to care about another human being......Thank you all......ALL OF YOU......for supporting our efforts....It would be nothing without each and every hand involved...Take care............L.

________________________________________
Wednesday Evening:

I couldn't help but add this to the most recent update~~~~

Lisa was doing the rounds checking to see if our families were taken care of for Christmas.....This is an email she received from a family who we have been working with for quite some time....I was amazed that this mother knows that we're here and dedicated to assisting her but yet she will not ask for more than what she absolutely needs to survive.......

**I talked to XXXXX today. I told her that the materials for the deck and ramp would be delivered this week. I asked her about Christmas...if they needed help. She said that they did need help and that she had pretty much given up on Christmas and since her kids are teenagers, that she had planned to just tell them that there weren't going to be any gifts this Christmas but that they should just enjoy the "gift" of being blessed with being together.....I told her that we would get them taken care of and that I felt that the lesson of being blessed by being together wouldn't be lost on her kids....She just cried and told me what a blessing we are.

This is an email regarding another family we are helping....I just want all of you to know what types of situations Me Fine faces each day......

**XXXXX sent her bills today. About 700.00. Car payment, gas bill, taxes on the vehicles and a phone bill. I haven't paid them today but I guess we can pay them all??? I refuse to lose faith!! It will come...I just hope it comes soon!

More later.......L.

Friday, October 28, 2005 9:41 AM CDT

Good Morning Everyone!! I hope you are all enjoying your day…The kids have just left for school and its quiet around the Lee house…Very quiet. I’m sitting here thinking of how much I actually enjoy the noise……Kids laughing…Folden telling me about his day at work…..Mom breezing in……Gee Rose and Ampa stopping by……Friends dropping in to just say hello…..The dogs running through the house after the cat….TV going in the background……Wilson and Anna Gaites practicing the piano…..mostly clanging, but a few good notes now and then…….The sound of the dishwasher and the washing machine……..Its all very comforting….I love my family……I am so blessed.

I saw on the news that Rosa Parks died this week…..Putting the race issues aside, I was thinking of what an impact one person made on mankind. A black woman….a seamstress….most likely with limited means….especially in those days…..She made a decision and changed a culture…….One person. I guess it goes back to a saying I saw on a church sign, on my way to the beach. “God doesn’t call the qualified, He qualifies the called.” That is certainly applicable in her situation. She saw an opportunity to change something and rather than taking the easy road….she stood up to the challenge. Remarkable. I was watching some of the footage from her arrest. She had been working all day. She simply got on a bus, tired from her job…and was heading home. Nothing unusual, probably….just like every other day. She was asked to stand in order for another person to take a seat. She and two other women declined and were subsequently arrested. She was taken downtown by the local police and booked. In those days, a person faced serious charges for disobeying a bus driver. What I found incredible was the fact that she had just finished work. She had to be tired and looking forward to just getting home…but she didn’t use that as an excuse. She did what needed to be done and changed the course of history. Ms. Parks probably didn’t think her actions would have such far reaching effects. She didn’t grand stand…she simply refused to get out of her seat…I think we all have those opportunities to change a life…to make a difference…I hope we can all see these opportunities for what they are and accept the challenge.

Someone sent me one of those long, chain emails…I normally don’t even read them but as usual, when God thinks there is something I need to know, He puts it right in my face……..One of the verses in this email read……. “The most important thing in this life is to help others to win-Even if that means slowing down and changing your own race…” It went on to tell about a “Special Olympics” event being held…8 or 9 kids were tackling one of the racing events….When the race began, they all took off running with all their might…each of them striving to achieve the medal that would be given to the first one over the finish line…One kid fell right from the beginning…as the others looked back and saw their friend on the ground crying, they all stopped, turned around, and headed in his direction. They picked him up and asked if he was okay. They all wrapped their arms around each other, shoulder to shoulder and crossed the finish line TOGETHER…all winners. The crowd went crazy….To me, that is a victory.

The email asked questions like, “who were the last 5 Nobel Peace Prize winners…who were the last five Emmy winners….Who are the five most wealthiest people in the world…..??” I read all the questions and could only name a couple in each category. The next set of questions asked things like, “Who are your five best friends…If you were in terrible trouble, who would be the first person to come and help…..???” Now those, I can answer. The point was that many of the people we strive to be like are really not that important in the whole scheme of things. It’s the people that offer a part of themselves that we never forget. Maybe our definition of “successful” should be changed a little. Maybe if we all saw people from the inside out, we might set our own goals a little higher….When I leave this world, I would like for Wilson and Anna Gaites to be able to say, “My mom was a good person. She made growing up fun and she helped as many people as she could along the way.” I think that would be much more of a success than, “She gave us everything we ever wanted and she left us financially secure.” ….I guess we all have our priorities…I sure hope mine are in the right order.

So many of you have asked me about my “friend” issue. I think I have it all in perspective. I just needed some time to sort through it. One of my good friends made a very good point…She said we often expect our husbands to do things to hurt our feelings simply because they, as men, don’t always understand how our emotions work….but we never expect our girlfriends to hurt us because they do understand how we are made up…how our minds work…and what is considered an injustice. I have found over the course of my life, that is very true. Folden was looking at some old pictures and made the comment, “Wow, you looked young in those pictures”…..I immediately flew back with…”yeah, and look how much hair you had”…..Okay, so that wasn’t nice but a woman would have never made such a remark. In this case, my “friend” did much more than slight me with an insensitive comment….If she had been successful, the results would have been heartbreaking. In trying to figure out the “reason” for this lesson…I found there was a lot to learn from the whole ordeal. I realized how much I trust Folden…and what kind of person he really is. I don’t know of many other situations where he could prove himself….I guess God thought I really needed to know that Folden and I are solid. We have been through a lot together and probably have a lot more left to deal with. I guess it was all just a humbling experience to show me that there are forces out there….things that will have to be overcome and its not my place to decide the sentence…I’m just suppose to learn from it all and move on. I can do that.

Since Folden IV was diagnosed, I found it hard to talk to anyone about my feelings, concerns, worries, thoughts, emotions, etc. I am not a very good oral communicator. I can’t translate my insides into words out loud.….After I started the journal, I learned to write it all down, simply to get it out of my head. Its just a place I come to…a place where I can be honest with myself, unload a little baggage and then continue on with my day. I can get things into perspective and clear some of the cloudy images in my mind. I really forget sometimes that this journal is out there for others to read. It doesn’t change anything. Its just not a concern. I just like to write and put my thoughts down in an organized forum. When I see the counter at the bottom, it amazes me that this thing has been read nearly 300,000 times. People email me after reading the updates and ask me about this or that or comment on something I wrote. I think, “How did you know that”…..After all this time, you would think it wouldn’t surprise me. I do thank you for continuing to follow my family and supporting Me Fine. It means the world to me. I feel like we have so many out there rooting us on. It makes the steps in the journey a little easier to face.

Me Fine news:

Don’t forget to link your Food Lion MVP card to Me Fine.

Me Fine has been offered the concessions at the RBC Center for 20 events. Lisa and I have decided to break up into teams so that we can cover these events and none of us have to give up so much time to accomplish our goals. We need 10 teams of 12 people to commit to 2 events. We have a schedule and you can pick from any of the available dates. All you have to do is run the concession stand for the time allotted. We already have a few teams started. If you can’t gather a whole team, then join one that is already being organized. 12 people, 2 nights between now and April. Beer is a part of the concessions….So please keep that in mind before making your decision. Call me or Lisa at 919-359-2030 to join in. You can also email us at info@mefinefoundation.org …. All proceeds benefit the kids. That certainly makes it worthwhile.

“A Southern Christmas Show” is scheduled for November 13th at the Rudy Theater in Selma. This is the American Music Jubilee’s traditional Christmas program. Tickets are $18.…Show starts at 1:45 pm…..Please call us for reservations. A very special thanks to all the churches who are supporting us by purchasing tickets…..A HUGE thank you to Parrish Memorial. You guys are awesome…We have had to reserve a whole SECTION for you!!! Thank you, thank you, thank you.

We are still looking a brick mason for the Hope House. Our last two have gotten behind in their business and can’t catch up long enough to contribute the time needed to get the foundation in. Its only 1386 sq ft and the materials are already on site……….We need several others to get this thing finished. Materials and volunteers are needed. Call me if you want to join in.

We are low on phone cards, Wal-mart and Target cards and $$$$$$$$$$$. Check into Visa Buxx online. All of this will be needed soon…especially right here at Christmas. Many families will not have the means to provide their kids with gifts during the holidays….The Clayton Branch of RBC Centura is once again adopting one of our families. Our table and information will be set up there the entire month of December. Stop by to contribute or get a group together to adopt another deserving family. These families are not sitting around waiting for handouts. They are surviving on their own. We just want to lighten the load a little.

Me Fine is in desperate need of corporate sponsors. If you would consider taking our information to your employer, please give us a call…….Our fundraisers are no longer enough to keep us afloat. Requests for extreme assistance are coming in from the hospitals everyday. A few good sponsors backing us would be a tremendous help.

I am hoping to organize a campaign that will get others involved without draining finances. Please think about this…..I know some of you out there can make this happen……Have your construction company build one home a year and donate the profits to Me Fine. Take the profits from the sale of one item in your business and donate to Me Fine….One massage, one person’s dues, one load of logs, one set of dishes, one investment, one plumbing job, the profits from the sale of one car……We will include your business on the Me Fine Website as one of our Super Heroes…..We will provide all the information regarding our nonprofit status so that your donation will be considered tax deductible………..Come on guys…….Help a kid……….If you could just see inside these families for one moment, I know you could not rest until you did something to help out………..

Lisa is going to be on “Talk Around Town” one day next week……I think it’s a noon show on WARZ…..a local Smithfield/Selma channel….Tune in. Lisa is awesome. She puts her whole heart and soul into getting together what our families need. She is amazing. I’m lucky to know her.

A local home school group is doing an art festival on November 19th at Folden’s office. I hope you locals will come out and support this group of kids. They are working hard to provide money for the kids at Duke and UNC. There will be an auction featuring some of the local artists and opportunities for the kids to make their own masterpieces. I need to see you there. These guys were not asked to do this. They called us with the idea. That’s making a difference!!!

Hollands UMC over in Garner is making their first delivery of items for our out patient bags. These bags have become very important to the families going to the apartments for the remainder of their treatment. If you have a group that wants to work on a special Me Fine project…..all you have to do is call us…………Your minimal efforts can make such a huge difference.

Clayton Fitness…..one of our biggest sponsors…..is organizing a few sports tournaments to be held in November……Call Clayton Fitness at 919-359-6060 to join in………They have a brand new building over near Bojangles……..It is a wonderful, new, state of the art facility. The staff is great! All of those guys have been supporting us from day one. They are having an open house and have also worked in this Me Fine benefit. Folden has even started working out after work. I can see a huge difference in him. He sleeps better. He feels better….and most importantly, he acts happier and more at peace than I have seen him in a while. James and Christy, the owners, have given him a short cardio/strength program that fits into his schedule. He doesn’t seem to be overwhelmed with hours of working out and I can tell he’s going to stick with it….I guess with him on the wagon, its time for me to start back, too…..Maybe I’ll see you there!!!

Our local schools are requiring their students to do a project during the high school years. Melissa Pelchat, a Clayton High School Senior is shadowing Me Fine as a part of her project. She and I are going to Duke on Monday to deliver a few Halloween treats. She is hoping to organize a craft project for the 5200 kids, assuming we have everyone’s okay. She has been very impressive thus far….I don’t know exactly who’s learning from whom???? If any of you 5200 cell mates need something….let me know and we will be happy to deliver it to your door….Nothing is too much!!! I know how hard it can be up there without the comforts of home and limited resources from the “outside world”………..Just email me directly at LoriKLee@aol.com ……or call the Me Fine office at 919-359-2030.…….We’re always here for you.

Okay………I’m getting wound up now…….it’s the caffeine, I suppose. Gotta head out to see the kids at school……..They’re having the fall party this afternoon and I don’t want to miss a second. Check out the new links....3 more awesome kids to get to know!!....Love you all, L.

Tuesday, October 11, 2005 7:46 AM CDT

I know it seems like forever since my last entry…….I have so many emotions at the surface right now, I just didn’t know where to start…….For me, everyday is a learning experience……something new to think about…process, and find the right place in my mind to store it……Major overload……….

The little boy that Lisa and I went to see at Duke died due to complications related to treatment………..That was so hard for me…….I imagined his mother’s grief…..the same mother that I watched caring for him, tucking his blanket, carefully holding his oxygen so that he could breathe comfortably……I know she has wondered a million times in the last couple of weeks….. "What did I miss….where did I go wrong…..?????" Obviously, she didn’t miss anything or do anything wrong……She gave him every single opportunity for a recovery that was available……There was nothing she could do but watch him slip away………into the care of another "family"….I pray the angels will penetrate her dreams and let her know that they care for him and love him just as she did…..That is a blessing that I have yet to experience…..I know how much we both need that message…..I can only pray it comes……..

I have had another dilemma that has invaded my family. One of my friends has really hurt my feelings and shaken my trust………I have been wondering a lot about what to do………I have forgiven her misjudgment but I can’t seem to let it go……to just forget about it as if nothing has happened…….Folden doesn’t understand why I am so unsettled……..I don’t know either……I guess it’s the worry of what could have happened if she had been successful….I can’t seem to get a handle on how I am "supposed" to feel……..I just know that it was a devastating blow and I am trying my best to find a place for it and move on…….I do rest on the fact that I have hurt people as well…….I suppose everyone has in one way or another……I am trying to think about how I would want another person to react to my own misjudgment……I will be working on this one for a while….

Max and I took a little walk this morning……..Max is Lisa’s little boy……Lisa, my friend Tracee and I all had little boys around 6 weeks apart…….I can remember how excited we all were….Within our group, there were 5 girls, all the same age….Tracee has 2 other boys and then our 3 little boys…….We often joked about how those 3 little boys were going to terrorize pajama parties, annoy boyfriends and tear up all the girlie things….I have watched Max and Cole grow…..I see Max almost everyday……I watch his gestures, the new things that he learns….I watched him put his shoes on today…all by himself……He was so proud…..He needed batteries for his new spiderman motorcycle, so we took a stroll to the drugstore…….I noticed how much he has grown….he enjoys preschool and loves to play in the bathtub…He and Cole are my daily gauge for how big Folden would be…where he would be developmentally…..and so on……My friends worried that I would have a hard time being around Max and Cole…….To me, they are a blessing. My two best friends each have healthy, adorable children…they are not taken for granted or tossed aside because their mothers are too busy for them……It actually makes me happy to see them from time to time…knowing they are safe and loved…..What more would I want for my two best friends????

See…I wasn’t kidding about an overload…….

Me Fine has been working hard for over a year to help the families with children at Duke and UNC. We have accomplished things that I would have never guessed possible…….We have received referrals from many different units in both facilities….not just oncology. We have a lot to brag about…..I know we have given piece of mind to many caregivers…We have helped them when no one else would or could……I am so proud of that…..Lisa works so hard to make sure each of their needs are met to the best of our abilities…….Now that we have a proven record…..we are trying to find corporate supporters…There have to be some businesses out there that can recognize what our goals are and where our commitments lie. FW and Company have been commissioned to "encourage" a few good people to help us in our mission…Hopefully, we can get in what we need to continue……So far, we have operated on complete faith…….kinda like the miracle of the fishes and the loaves of bread in the Bible……..With a limited budget it doesn’t seem like we could have done so much…….but we have……it just keeps coming from somewhere…..just in time……..Charlie says that God wants to make sure we can handle the little blessings before he awards us the big ones…….I know He realizes how many families have come to depend on us……and I know He won’t let us down. Lisa emailed me today with a list of commitments that we have made to some of the social workers handling the hardship cases…….I was amazed at what some of these families have to give up to get their child the treatment they need…….Here is one of the emails that Lisa sent me today…..This child is in need of oral chemo for 12 months….$1200 per month for just the meds……that doesn’t include hospital visits, clinic trips, gas, supplies, other meds and on and on…………..They have NO resources……no house to lose to cover the costs, no car to sell………they do not qualify for assistance at this point but their case workers are trying………Lisa asked how much we could commit to for this family…..I’m thinking, let’s get them through this month and see what our funds are like for next month……Hopefully, by then, other agencies will be involved and we can help with some of the other things………that is not going to be the case……….This is what Lisa wrote me after talking with the caseworker at the hospital……………

Lori,
I talked to XXXXXXX, the Duke social worker handling the XXXXXXXXXX family, today. I told her that unfortunately, we cannot make a commitment to pay the 1200.00 a month that they need for her medications. I did tell XXXXXXX that we will pay the first month in whole. I made sure that she knew that we would do all that we can in the future...I didn't want her to get the feeling that this was the only time we would help them. I told her to call or email me next month and let me know how much other foundations are helping and maybe we can make up the difference. She paused a moment and said, "I haven't found any other agency to help them."

Lori, this little girl is the same age as Caitlin and I just cannot imagine having a child that understands what is going on, who also understands that her parents cannot afford treatment that will be her only chance. How would you tell your child…."I'm sorry but we can't afford it and no one else will help us either." It is breaking my heart!
That being said....we have said from the start that we WILL run on faith. I know God has sent us everything we have desperately needed so far and I will believe that he will help us help this family as well.
Lisa

See what I mean………Heartbreaking. Most of you are thinking, "Well, I would give up everything to get the medicine……" What if you’ve already given up EVERYTHING to get them this far……..?? There is nothing left to give up………I just can’t imagine………So you must understand why corporate intervention is becoming necessary……….We WILL NOT say no.

We have been added to Food Lion’s list……..If you shop at Food Lion and would like to have them support Me Fine, please go online and have your card linked to us……..Its simple and it certainly helps…….I realize many of you have already chosen a charity/school/fundraiser to link your MVP cards to……..just please keep us in mind.
With a little help and a few good friends, I think the family in Four Oaks is getting that deck and wheel chair ramp……..I will post the sponsors and volunteers as soon as everything is confirmed…………I am so excited that someone stepped up to the plate and said, "I will help"…….Foldie Lee is watching and saying, "Dat what me talkin bout!!!!" It takes a whole village to raise a child….especially one of these special children……I appreciate all that has been done by our supporters to make our accomplishments possible……….It amazes me…….!!!!

Tickets for the American Music Jubilee's "A Southern Christmas Show" are going fast.....amazingly fast.....Please call us for information. This is their regular production but tickets are discounted through the Me Fine Foundation. $18.00 per seat.....(normally $22.50)......November 13, 2005, 1:45 pm at the Rudy Theater in Uptown Selma.......Ad space is available in the programs......I hope to see you all there.....Please come!!! You can enjoy a great show while helping the children and their families.....Win-Win.

Is that it???? I guess so for now……..Everyone is here for dinner……..Ampa, GeeRose, Me, Folden and the girls, mom, Joy, (Josh is on the way)………….What a wonderful feeling to eat dinner with my family and close friends…to hear them laugh, talk about the day or just sit quietly around my table……….…..Its just one of the things in my day that makes life worth living.

Take care………….I love you all……………L.

Wednesday, September 14, 2005 10:00 PM CDT

Hello everyone! Are you enjoying this weather?? Ophelia is really making her presence known…..

Hmmm………so much to tell……..Let’s see………..Well, today, Lisa and I visited 5200.…….Whew……..I have been back several times in the past year but never a visit like today……We started out at North Pavilion where the family support team is based…….I saw a couple of my favorites…….those guys really stood by us the whole time we were inpatient…and have kept in contact since..…..It was an honor to be able to fill a couple of their needs for families going into outpatient housing……..With your support, we delivered several items that will help the families care for their children on their own……………Then, we were off to the main hospital………..…I spoke with a few of the valet guys who remembered me…….that was nice……a couple of others had moved on to other things……We waited for those agonizingly slow elevators………that hasn’t changed……We headed to the unit……..the sounds, the smells…….all so familiar…….We went through the clean room………shoe covers, hand washing……..hit the button with your elbow………..same routine………….And there stood Andrea………She is still as lovely as ever……….I am so glad she is still a part of 5200.……She is an amazing nurse…………We dropped a few of your donations off in the family lounge…….cookware, videos, cds……and a box full of hats that was donated by a great group in Clayton………I okayed it with the nurses to visit one of the new families we are working with……and up walks Dr. Martin………still the same Dr. Martin……ponytail and all……I was quite impressed that he remembered me and my family……….he sees so many kids each year……..I said hello to a couple of the other nurses that I knew and noticed a lot of new faces……..Then we walked into the patient’s room to deliver a few things……That was the first time I had been passed the door since we were in a room of our own………Ugh…….I realized at that moment that I shouldn’t have gone in……..but there was no turning back…….I saw the mother…she was hovering over one of those cold looking metal cribs…….holding oxygen over her 13 month old baby’s face………trying to get his numbers to rise……..it wasn’t working……….his heart rate was high, his breathing shallow and rapid……..his oxygen was 88, 87, 88, 89, 87.…..It should stay around 97-100.……..I could tell she wasn’t panicked……just very concerned………Lisa whispered, “Are you okay”…….I said, “I’m fine”…………knowing that I was trying to fool us both……The little boy looked like a cherub…….full cheeks…….blond hair……..blue eyes………full tummy……..(a result of some of the meds…….most all the 5200 kids have that puffy tummy)……The breathing noises were so familiar…….his appearance……the monitors………the beeps, red lights……….the pace that his mother was moving…………It was all as if I were right back there………trying so hard to make Folden better……..losing more ground as each day passed……….Trying so hard to memorize the smell of his breath…….the feel of his skin………the sound of his voice………I knew I would need those memories very soon……..I knew that would be all that remained…………The tears finally broke through…….I started to cry. He reminded me so much of my own son……..similar characteristics…….similar circumstances……….I watched as he laid very still………the only movement was his eyes……he never lost sight of his mother…….wherever she moved, his eyes followed……….I thought, “My God, why is this child here…….he should be playing, learning to walk, to run!!! His mother should be rocking him to sleep after a long day in the sunshine…….what an injustice……….” My emotions were going crazy and I knew my state would only scare his mother……….So I told her thank you for allowing us to visit……..and I left…………That was all I could do………I know that this little boy has a much better prognosis than Folden had………I know that he will probably be okay……….and he will get to run and play and spend time in the sunshine……….I hope you will pray for his mother’s strength until that day comes…….

Lisa and I met the new childlife specialist……and made our way to the door……..In comes Charlene…….our well known body guard……..Her desk was right in front of our door…….During the last month, we were adamant about visitors……..She personally made sure that no one went through that door that wasn’t immediate family……She and Ampa were entertaining……..arguing about everything……like two kids who have spent too much time together…….I was touched that she called me by name……….Charlene was a good friend to us……she did whatever she could to help us…….to make things easier for us……….As we were talking to Charlene, up came Donna and Crystal and several other of “our” nurses……..It was like a family reunion………I spent 6 full months with those people…..day in-day out……they watched over Folden and kept him comfortable…….I know they did everything they could to make him better………I owe them everything……..without them, things could have been even worse………..They treated us as family…..got to know us……really know us…….I pray that God will watch over them…….they really do make a difference through their interaction with the children and their families………They go the extra mile…….I miss them a lot.

Lisa and I left the hospital……..I had calmed down and pulled myself together……….We drove back to Clayton and I headed to school to get my girls………I was very glad to see them…….to hear them laugh, and fight and argue………it was music to my ears……..

A part of me will always be on 5200.……always. No matter where I go, or what I do, I will have one foot planted firmly on that hard tile floor…….That is the last place I saw my son, heard his voice and stroked his hand………That is the place I learned about perseverance and faith, real faith…….what “true friend” means and the importance of my family…..I learned about the generosity of strangers….the relevance of love…and compassion…..I learned how to reach my hand out to others……..and I learned who I actually am…….the person inside…..I learned to accept the good and the bad within myself….and I learned to try to improve both………The main thing I learned is that none of us are ever alone……..even during the loneliest times……..there is always Someone there…….always.

Josh and I have had some fairly heavy duty conversations lately. Josh is the pastor at my “home” church…and we find ourselves, quite often, on my back deck contemplating various topics……Between him and Charlie……I have learned so much……When we were at Duke, Charlie and I talked a lot about God’s divine plan and what the purpose for each of us is……….I questioned Charlie a lot about prayer…….”God knows what I want….why do I have to beg for it…….and if there is a divine plan…why do we pray…….” I have also posed these same questions to Josh….and of course, Joy, his wife……..Joy and I seem to be a lot alike…..and sometimes, she can explain Josh’s answers….translating his comments into a language that I can understand………..(I guess God thought I needed a whole “team” to get it all straight…)……..Anyway…..Josh says that even though there is a divine plan, we pray to show obedience and faithfulness……….I confessed to Josh that I no longer say prayers……..I don’t get still or get on my knees and speak to God……….I have begun to “stay in prayer”……..Kinda like----rather than calling God up and letting him know what is going on, I keep him on speaker phone all the time…..I talk to him in my mind, constantly……..big things, little things….thoughts, questions, complaints……Josh says that is a sign of spiritual maturity……..that is what God is looking for………I finally got something right……..but I was feeling like I was failing because I couldn’t “hang up”…….I felt like I needed moment to moment contact………not just a periodic conversation………..Josh also reminded me that God would never give me more than I could handle……Well, I disagree. I have talked with Charlie about his same statement on more than one occasion……Believe me, things happen on 5200 that no one can handle…….I know that for sure………Charlie looked at the verse again…..and it specifically says, “God will not give you more TEMPTATION than you can handle……….a notable difference……….Josh researched it and came to the same conclusion……What a relief……..I know that things that have happened in this world lately are more than many of us can handle…..Seeing your child suffer, go hungry or die……that’s unbearable………..God does give you more than you can handle……….alone………..That’s why faith and belief are so important……God does give us more than we can handle, we just have to look toward Him to help us through it………Now, that makes sense to me. I am sure that some of you will probably have another version or even disagree with it all……..that’s okay. I am still learning.

I am going to go for now…….I think I am in the middle of an emotional overload………Just a couple of “Me Fine” things I want to mention in closing…….

Please pray for Caterina….. www.caringbridge.org/ny/caterinamarcus ……..she is doing fabulous and is in the final stages of treatment….Her mother, Claudina has founded the Caterina Marcus Foundation to assist families with children diagnosed with Hurler’s. Her site is very powerful and Claudina and her entire family have been a true source of strength for me……I hope you will take time to tune in.

The American Music Jubilee is presenting “A Southern Christmas Show” at the historic Rudy Theater in Selma, November 13th…….This is a benefit for the Me Fine Foundation and all proceeds go to the families at Duke and UNC…..We will be offering seats at a reduced price, (for this show only!!!) …….Contact us at 919-359-2030.……for reservations or more information.

Keith Henderson, “Illusions of the King” and Diane Bailey, “Sweet Dreams Again” will be April 1st, 2006 at Johnston Community College…….The 2005 show was spectacular…and next year the Henderson’s are bringing their band………..I hear that is incredible……….These tickets go very quickly…..please call us now for preferred seating……$20 each.

One of our local UNC families is holding a fundraiser to benefit the Donleycott family. The Donleycott’s are right here in Johnston County….Macy is very young and has been diagnosed with leukemia. This family has fought a very brave battle….and just needs a little help to recover from the devastating costs associated with Macy’s treatment….We received this information through our office and would like to encourage all of you to attend.

BBQ Chicken fundraiser for Maci Donleycott October 22nd from 11am-5pm at Branch Chapel Church. Branch Chapel Church is off of Hwy. 96 in Selma. The address is 7438 Hwy 96 North. Feel free to call Me Fine at 919-359-2030 if you have questions or to purchase tickets.

We are trying to assist another Johnston County family. They are from Four Oaks and their son has been treated at Duke…He will be discharged in the next few weeks……They are in need of a deck and a handicap ramp. The materials for the ramp have been donated by a Four Oaks school teacher and the family can provide some of the manpower…However, we are looking for the materials for the deck and someone to lead the project who has experience in building these types of structures……..Men’s church groups, local construction companies……..I know this can be done……and you guys in Four Oaks have been so supportive through the whole journey……I am sure someone in the community can come through with this request…….I also know that they have a front porch and the concrete has never been poured. These things are important to us because the child will definitely need wheel chair access to be able to return home….Remember that while inpatient, sunshine is a mere luxury and rarely seen by the patients….He is looking forward to sitting outside and enjoying the fresh air. (Fresh grass and other plants are a no no after immuno suppressing drugs) He will not be mobile so a sitting area will have to do until he gets stronger…..Me Fine organized the remodeling of an ENTIRE HOUSE in the Greensboro community. A local business provided the materials and labor to refurbish a substandard home……..I am sure that Johnston County can come together and provide this child with a deck and a porch…….The caregiver has lost her job so means for this type of thing is out of the question…….Should anyone like more information on how to help with this project or to donate directly to assisting this family with other expenses, please contact our office or email me directly…..These people are our neighbors………a great opportunity to see first hand what your support can do in the life of another human being. ( We have a neighborhood in Johnston county that has adopted a family……You would not believe what they have accomplished)….I would like to see more of that. Remember that Me Fine is recognized by the state of North Carolina and the United States department of treasury as a nonprofit organization. We are registered with the Secretary of the State of North Carolina as a nonprofit corporation. Your contributions of services, money or materials are tax deductible as allowed by law.

Take care…….I am sure I will have much more later…….In the meantime, please visit our website…..We have added many new items and even more text will be added over the next few weeks…..Check out our handmade quilt offer……..I have one of these quilts with Folden’s pictures in the squares…..Its really sweet………Josh Shepherd has volunteered his time and talents to make this site organized and informative…..Oh!!! We now except PAYPAL!!!! www.mefinefoundation.org ……..All my love, L.

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Below is a note passed to me by a friend participating in the Leukemia and Lymphoma Society's Light the Night Walk.......I thought some of you may be interested:

On September 24, I’ll be walking in The Leukemia & Lymphoma Society’s Light The Night Walk to raise funds to help fight cancer. The Society is the world’s largest health organization dedicated to funding blood cancer research and providing education and patient services.

Your involvement in this event is very important! I'd like to invite all of you to join Team Hope to help raise money to find a cure. Contact me to get more information on how to sign up. If you aren't able to join to team, a donation would be awesome!!

Why have I been involved in LLS the past 5 years?

Seven years ago, my cousin Sherry Piganelli of Bradford, PA died as a result of having Hodgkin's at age 42. She left behind 2 beautiful daughters.
My childhood friend, Geralyn Saya from Syracuse, NY, has a 7 yr old son name Jared (he's a cutie). He was diagnosed with leukemia right before his 3rd birthday. Jared went through many painful years of cancer treatment (chemo & 2 bone marrow transplants). Thankfully, due to new cancer treatments Jared has been CANCER FREE since 2003!!
Recently, 70 yr old Shirley Anderson of New Jersey, my friend’s mother, was diagnosed with 1st stage lymphoma. She has had chemo and is currently in radiation therapy, which will last for 4 weeks.
Jim Nelson of Apex, my friend's husband, was diagnosed with Hodgkin's almost 4 years ago. After radiation treatment during his lunch hour, he's CANCER FREE today!
Wouldn't it be great to see CANCER FREE after everyone's name who is affected by a blood cancer? Obviously from the information above, blood related cancers have touched my life personally. I’d like to enlist your support for this important cause. There are more than 712,000 people in the United States and Canada who are fighting blood cancers – leukemia, lymphoma, myeloma and Hodgkin's – and although research is responsible for increasing survival rates for these diseases, the battle is far from over.

Every five minutes, someone in this country is diagnosed with blood cancer. Every ten minutes, someone dies.
Leukemia is the leading cause of cancer death among children and young adults under age 20.
Lymphomas are the most common blood cancers and incidence increases with age.

Please sponsor me! By donating, we’ll both be helping save lives. Make your check out to The Leukemia & Lymphoma Society and mail it to me at 1008 Flanders Street, Garner, NC 27529 OR visit my fundraising page at www.active.com/donate/ltnRaleigh/ltnDunn3) to make an online donation. In addition to your valuable sponsorship, I welcome you to join me in the Light The Night walk at the Bicentennial Mall in Downtown Raleigh on Sept. 24. Please visit www.lightthenight.org or call (877) LTN-WALK for more information. There is only 4 weeks until the event so make your donation today!!

I thank you so much for taking the time to read this email and thank you for your donation!

Diane Dunn

Thursday, September 1, 2005 8:32 PM CDT

One whole year……..Can you believe it? In one breath, it seems like a lifetime ago…..in another, it seems like only moments since I watched Foldie slip away from me….I can tell you that time does not make it better….or at least it hasn’t so far………..The pain is still as real, the grief just as intense, and missing him is constant……..I don’t know if that will ever change………To mark the anniversary, I have been doing some reflecting……evaluating my life and the lives of those whose journeys have been directly effected by Me Fine…….Just a year ago today, I had to watch my son die……..He had been hanging on for hours……his oxygen level critically low……The nurses thought that at any moment, Folden would take his last breath……..but he continued to breathe……on through the night and into the morning……..Around 3 am, Folden III tried to ask him a question, he opened his eyes and muttered something….no one could have possibly understood what he said………I guess we all were allowed to think anything in our minds……..Did he say, “I’ll miss you so much”?…….or maybe, “Thanks for taking care of me…..”………It could have been, “I’ll be okay, don’t worry”, or “I don’t want to leave”…….None of us will ever know what he tried to say……..I think that was the point……..Time was limited, and he left us with one final phrase……..we were allowed to believe it was whatever we wanted it to be……..

At 8:35 am…….Folden made a very deep breathing sound….and that was the last…….He was gone……..I asked to hold him……something I hadn’t been able to do in months……….The weight of his body in my arms was such a blessing………No mom should have to go months without feeling her baby in her arms……..I remember seeing Ampa, GeeRose, Folden III, Blake, a couple of the nurses and the doctor……all standing around Folden’s bed……There were of course tears, sadness……..it was awful…….even if I had been an outsider, I think it would have all done me in………I could see how much my son was loved…..He was truly loved…….But the blessing…..the very best part…..is that Folden loved us too…..We were chosen to be his family……We were allowed the opportunity to care for him in this life…….we were allowed to love him and be loved by him……to hear his laughter, watch him learn to walk……..It was us that he reached for when he was hurt or scared…….it was us that gave him comfort………We loved him and he loved us…..How lucky can a person be…….?

Because of Folden, I think I have learned to see the world so much differently……….Obviously, there is a lot of sadness……….families are still being admitted to Duke and UNC on a daily basis…….treatments are still being administered……broviacs still being placed……..The battles certainly continue……….That is something that only research can change………Just look at what Katrina did to the Gulf Coast…….Oh my God! Is that life changing devastation or what? My heart aches for those people………watching the babies suffer, seeing the horrified looks in the parents eyes………babies who have just been born……without proper nourishment, water, or even a clean diaper……….Can you imagine being the soul inside of one of those people??? I do wonder at times what God is trying to accomplish…….Did he do that or did he allow it to be done…….??? Did he want to see if people would come together and allow the great human spirit to show itself…..I don’t have any of the answers, but I have faith that there is an answer…..

I sit back a lot and watch families….just people here and there……Walmart, the grocery store, restaurants……I see us all take so much for granted…..Sometimes, we see our children as annoyances, rather than the little blessings that they are……..I want to shake parents sometimes……simply for not realizing what their bad mood or hurried state is doing to the little one standing beside them………

I have seen so much suffering…..so much grief………I have been to countless funerals, received emails about children that I met at Duke or UNC that aren’t doing so well……..and time is limited……..I think about the moment that I received the same, devastating news…..”Your son will die”………Sometimes, the whole thing is just so overwhelming……..I think back to the days when I didn’t realize that things like this took place…….the days where I felt safe…..Those things only happened to other people………Ignorance is bliss……

I think about all the courage and unselfishness that I have seen in the past year…….People who don’t have a lot to spare but still pass me money to share with a family………and I have seen what that money along with a few prayers can accomplish……So many journeys have been changed because we care………..so many families can rest assured that their homes are safe, their power is still working and they will have enough money to get their child to treatment…………We have done that……..

My insides are all chewed up……but my mind is strong and determined…….We have been thrown so many curves, been forced to jump through so many hoops, but in the end, something good comes from it…..and its all worth it in the long run……..There are still days that I have a hard time putting one foot in front of the other………days where I don’t see the point in anything……..I feel hopeless and worthless………….but then someone calls me “mommy” and I am shaken from my self pity………My girls are awesome……….They are normal kids with a lot to learn, but they are incredible……..They are tough and smart……kind and considerate……..I owe a lot to the people who cared for them in my absence….The teachers at Princeton who kept them going……my mom, Rose and Tammy, who made sure they didn’t miss much while Folden was so sick………….the people who watched over them, encouraged them………I can’t imagine what could have happened to them without so many cheering them on……..

They still cry sometimes for Folden……..They dream about him a lot………I can only tell them that he is always sitting on their shoulders, watching over them…….

I still think about the glitter I saw right after Folden died….……..I sat outside late at night and talked to God and Folden…….I cried so hard…all the pain and grief that I had felt for so long had finally surfaced……..I must have cried for hours…..Suddenly, I started to see little wisps in the air…….sparkling, glitter like specks…they were everywhere………….I hadn’t really slept well in months…especially the few days before………I watched as the stuff came down like snow……I still have no idea if I really saw it or if it was something that was created in my mind……….but it seemed real…….I have thought about it a lot……trying to sort out what I saw…..It just hit me this week…….I remember sitting there and watching it for so long but all of a sudden, I got up and went to bed…..I often felt terrible for not staying outside and seeing how long it would last……..but I got up, came inside and went to sleep………Maybe that was the point…….He let me know everything was the way it should be……..and it was okay to sleep again……

I miss Folden so much…….He is in everything that I do…..everywhere I go………I wish I had some profound statement to sum it all up……something powerful to say that would mirror all that I have seen and all that has been done……….but there is no magical sentence……..nothing that I can think of to explain this amazing journey…….I would still trade everything that I have just to hear his voice or run my fingers through his hair………I would give anything to feel his hand in mine…….to watch him run through a mud puddle or see him ride his tractor………There is nothing I wouldn’t sacrifice……..just for one brief moment……….I can only have faith that God is in control…..Folden is okay and we will see him again………..

I hope you will all continue to follow Me Fine and our accomplishments…….It is through your support that the whole thing is possible to begin with…….It is because of all of you that we had the courage to follow through with this Foundation………and it is making a difference…..I can see results every single day…….

Please pray for our country as we face yet another tragedy……Please do what you can to help our neighbors who are scared, hungry and miserable……..Its just the right thing to do…………….All my love, L.

Saturday, August 13, 2005 2:08 AM CDT

Well, I guess my summer is officially coming to an end. This is the last weekend that we will be here until after school starts. Folden is coming down tonight and everyone else has left. Its just me and the girls now. Kiona has gone home to spend some time with her friends and family…The girls’ friends are all back at home….One more family weekend and then its back to the grind…schedules, bedtimes, homework….Ugh! I’m not setting a very good example am I??….I just love the freedom…the sunshine….the carefree days….Tammy, (my sister-in-law), is down for the week. Wilson, Anna Gaites, Aspyn and Alexa have had a great time. Most days are spent at the pool and then roller blading or riding bikes. They stay up to ungodly hours and then sleep in….Its kind of amusing watching them argue over the smallest thing and then in the next breath they are all getting along….I feel like I have accomplished my mission for the summer…Give them a summer that they will remember fondly…..Right now, we are at the water slide…they are in a chair beside me pigging out on cheese dip and nachos. It’s a wonderful sight…I think about all the families who are spending today at one of the hospitals….worried and stressed….unable to even see the sun…..I hope they know that I haven’t forgotten.

I already have 3 presentations scheduled.

August 21st at 11am….Buckhorn UMC
“Women’s Sunday”
Hwy 42 West and NC 581--Wilson/Kenly area
For more information, contact Mrs. Winslow at mary_winslow@hotmail.com

September 17th at 11am….Mt. Moriah Baptist Church
“Women’s Luncheon benefiting the House of Hope…House of Hope is a residential counseling program for troubled teenaged girls.
For more information, contact Amy at Stormsfamily@aol.com

September 24th at 4pm….Still Water Lodge
Event benefiting the Rode to Hope Charities…sponsored by Duke Children’s
Allison Smith is the mother of a child with ALL and is hosting the event
For more information go to www.madisonsmith.org …that will link you to the Rode to Hope website……
It is an event for the whole family…featuring a motorcycle benefit ride, kids activities, food, entertainment, etc.

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Also, I want to recognize the sponsors at the truck raffle….and for those of you who couldn’t attend, I have posted the winners.

Tim Dowd- Outdoor Fireplace………donated by FW Lee, Jr. Logging Co., Inc.
Stephen Lee- Truck Tool Box…….donated by Musgrave Auction
David Hendrick- 5 Hours of Computer Services…donated by the Documentation Specialist….Jennifer Hinton
Ronnie Johnson- Garden Bench…….donated by DeWayne’s
Needham Earp-Tool box……..donated by Musgrave Auction
Donald Cummings-Shop Vac……donated anonymously in honor of Duke/UNC Nurses
Garland Meadows- Gail O'Neil signed prints…….Artist Gail O’Neil
Russell Briggs-Birdfeeder…..donated by Homes for Homeless Birds….Chad Brady
Susan Belsante-Membership/Training Sessions…donated by Clayton Fitness
S & R Lawn Care- Outdoor Grill…….donated by Ray M. Floors Community Park
Mark Foster- Membership/Training Sessions….donated by Clayton Fitness
Cynthia Thompson-Foster-Grass Trimmer…..donated by Blake & Tammy Lee
Rich Tanner-Grill set/cooler……..donated by Staff of Dr. Folden Lee
Paul Dunn (Mule City Feed)-Birdhouse……donated by Homes for Homeless Birds…Chad Brady
Joe Carlisle-Framed Print…….donated by Right Angles
Frank Lee Ins-Pressure Washer….donated anonymously in honor of Me Fine Volunteers
Perry Perdue- Texas Steak House Gift Certificate ($100)…..donated by Texas Steakhouse
Holt Lake-Leaf Blower…….donated by FW Lee, Jr., Logging Co., Inc.
**name forthcoming - cordless tool combo…..donated by Blake & Tammy Lee
Bryan and Christy Narron…..Grand Prize….2005 Ford F150.……..In cooperation with Capital Ford, Inc….

Other raffle items donated by:

Arthur Murray Studios
Billy Byrd
Mule City Grill
Clayton City Florist
Clear Comfort Pools and Spas
Caterina Marcus Family
Johnston County Hams
Seasons Unlimited
Daydreams Nail Salon
Phyllis and Company
Discount Auto
Clayton Tire

Door Prizes donated by:

Caterpiller, Inc.
Arthur Murray Studios
Goose Creek Marina
Bridget at Perfect Touch Hair Salon

Again, I thank you all for your support and input. I think the whole event was very successful.

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We have had a lot of bad news lately. We have lost several of our kids…My heart breaks for their families. I hope you will continue to offer prayers for the many families who face these tragedies each day. You may not know them or even hear about them…but they are there……

We have added 2 new members to our Board of Directors. Many of you will remember our best buddy at Duke, Jim Belsante. He is now in medical school at UNC and seems to be doing well………..I have had the pleasure of meeting several members of his family…What a remarkable bunch….We are honored to have Jim on the board.
If you have been to a Me Fine event, then you have surely met Leland Clayton. He has been a tremendous asset to Me Fine and very supportive to my family during our battle…before and after…..It is also an honor to have Leland as part of our team. He and his wife, Evelyn, have shown unselfish generosity and consistent support. Our deepest gratitude guys…..!!!!

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Several of our local churches have stepped up in support of Me Fine….It means a lot to me personally to have people from “home” in our corner…..

The Princeton Church of God has a group helping with donations for the Hope House….The Hope House has passed its first inspection and the brick is on site for the next stage….The framers are gearing up….Let me know if you want to participate in this worthwhile project….Anyone looking a 3 bedroom, 2 bath home in the Princeton community….give me a call………It is built with a lot of care and good will………I am hoping to offer it to a family who would have otherwise not had an opportunity to purchase their own home. We will keep the price of the house a little under market value and through our many resources, we may can assist with financing….Anything is possible.

My home church….Hephzibah Baptist, just sent us a huge donation. I can’t tell you how much that means to me…..Those guys have known me since I was a little girl, gathering Easter eggs at the annual Easter Egg Hunt. Their support of Me Fine is a tremendous accomplishment for me…..and as with every dime we receive, I will make sure that the contribution makes a huge difference for our families….

Holland’s UMC is working on a mission project to benefit children….with their 2 year olds to 5th grade Bible class. They have selected Me Fine as the beneficiary of their efforts. We are working on organizing a collection of items for our outpatient bags…..The Me Fine team is sooo excited…..

Wilson Mills Baptist Church just sent in a very generous donation….We have received so much support from that church as well as the individual members….Thank you all sooo much…….

Folden just sent my mail from home and I saw envelopes from a couple of other churches………..I promise to continue to find support for the families who need it….and make your efforts and support mean something to as many as possible……..I know in my heart that your generosity will not go unrewarded….

I will be back home next week…………Please keep your eyes and ears open for families that need us…..You are our best resource………….If you come across opportunities or ideas that might benefit our efforts………..Please pass those on too…..…………You guys have sent me a lot to work with already……and its all paying off……..As always, all my love………………L.

Monday, July 25, 2005 10:36 PM CDT

Hello Everyone~

Man, the raffle was pretty awesome….Everything fell into place right at the last minute…..We sold 530 tickets……and raised enough from the second, smaller raffle to almost pay for the dinners….I was so excited…….here’s a basic run down of the evening…..

Rev. Charlie, the official Me Fine Chaplain, said grace as Holt Lake Barbeque and Seafood started serving dinner…….We had a very southern pig picking and I was extremely impressed with the staff that served…I loved their attitude and their spirit….I could tell they really wanted to do a great job for the event……and they did……..

A few very talented musicians gathered voluntarily to sing and provide entertainment for the raffle….They were breathtaking. They sang lots of various types of music from children’s songs, soft rock, contemporary Christian…I couldn’t stay focused on what I was supposed to be doing because I wanted to stop and hear them perform….Thanks so much guys!!! You really MADE the evening….

At 6:00, right on schedule, I spoke briefly about the foundation and its mission….I talked a little about our goals and accomplishments….and then I stopped for the slide show…..The &* thing didn’t work….Those pictures can say volumes more than I could ever say…..Its 59 pictures of beautiful children that we met during our journey…….Happy kids fighting the fight…..Smiling, vibrant kids, some without hair, some hooked to a pole…..but all of them are taking it in stride….not giving up….not balled up in defeat…..Awesome kids!!

Well, I didn’t fall apart although I was very disappointed at the equipment………(I did have someone offer to donate a projector)….Faith, faith, faith!!

We continued on…finished the speech….and moved to the actual raffle……….Folden called out the names, Kiona pulled the names from the drum and Josh kept the drum spinning….This is where I lost all sense of time, space, organization, scheduling, planning……..We were supposed to raffle a ticket, then pull 5 winners, raffle a ticket, pull 5 and so on until we hit the 1st 19 winners……I had worked a long time on that schedule….down to the last detail….and then I forgot I even had it in my hand………….So, we basically pulled the first 19 tickets……announced the sponsors and the winners and moved to the door prizes……..Lisa called out all of those…tickets were free to everyone who attended…..then to the second raffle……..There were about 20 or so prizes on that table and chances were only $2 each…Jim, Folden‘s “best buddy“ drew those winners….(I was so glad to see him….and he brought his family!!!)…….Then we moved back to the grand prize drawing….which was, of course, for the truck……Folden said, “Lori, is it okay if I say something….”…..I thought, well DUH!!! Of course its okay….I guess I’m just use to him wanting to keep some distance between himself and the guts of the foundation…..In other words, we all have found different ways to heal………Mine is to dive right in the middle of it all…..Folden’s isn’t.

He took the mic and stood right up in front of God and everyone and told about how his dad stood by us….how he was with us everyday, giving up everything to be with Foldie…..He said, “I think there’s only one person who should pull the winning ticket….My hero, My dad…” Well, I don’t know how everyone in the audience reacted but I just about went to my knees……Tammy, my sister-in-law and I were trying to find something to get under….Tracee, one of my good friends, was off to find us all tissue…….Lisa, the associate director, had already had an emotional week….One of our Duke babies had earned his wings and a child that she had gotten very close to was being unhooked from life support in just a few hours…….She was already Jell-O….and now this…..Okay, I can take a lot….I guess compared to what I have seen, nothing much could be worse……….but my heart is still very soft and the least bit of a tug will turn me into a noodle…..I can’t tell you much of what happened after that……I do know that Kiona stepped aside….Josh turned the wheel and FW pulled the ticket……..Bryan and Christy Narron of Clayton won the truck……They weren’t there but Folden called them from his cell phone….Christy answered and the excitement in her voice was awesome……..She called her husband who was actually in the area…He stopped by right at the end of the evening and got the keys….He was soooo excited…………I wanted everyone to win…I really did….I’m glad that such a deserving family won….

After that, the music started playing and most everyone started leaving….I guess it was about 7:30.….One of the Holt Lake guys brought me food….Cheryl and Andre came in….for you long time readers, you will remember them as a couple of Folden’s favorite nurses…….Andre was the first nurse I met…..Cheryl was his primary……..I am sure I wrote about them several times…..We sat and talked as everyone was leaving……I saw several people picking up information….Several people walked up to introduce themselves………..I actually got to meet a few people who have signed the guest book or emailed me……..I had several people let me know that their company could do this or that….We even had a gentleman who offered his plane and himself as the pilot to get a family together if needed………Now THAT’S what I’m talking about!!! ~~Pooling resources~~ Brandon and Amanda were also there………I was so happy to see them……..They are Hunter Jones’ parents……….I can still see the sadness in their eyes…….just like the sadness in mine….I don’t think it will ever go away….They seem to be doing okay….Carrying on…..holding each other up…….I love those guys!! They and their parents sure made some of our time at Duke a little more bearable…..I can still remember sitting outside with Amanda…..We compared our daily schedules or just talked about our families……..pre-diagnosis…..God really does put people in your lives at the right time……There were others who made some of the days a little better……but Brandon, Amanda and the rest of their family were always there….always…..I guess no matter what, we will be friends for life….Circumstances like ours is a very powerful kind of glue.

Okay, what next…..Ummmmm…..I know I was tired…my feet were covered in blisters and I was very glad it all turned out so well……..There were a few learning experiences, things I could do better next time…or differently…..but overall, a huge success………So many families will be assisted from the money that was raised…..I was very proud to be a part of it….to see so many volunteers jump right in….and to see so much enthusiasm for the cause……UNC Children’s was even represented…..……Does it get any more successful than that………All the totals aren’t in…..but we netted in the neighborhood of 30 thousand dollars…..How about that?

The girls and I left right after the raffle and headed to Goose Creek……..Anna Gaites and Kiona left with Folden…I brought Wilson and Madison, one of her best friends………We stopped by home only to pick up the cat and we were off…….We were back at the beach and snuggled in bed by midnight……….

Sunday, was a good day…Nothing hanging over my head…nothing really pressing…….Folden had to leave Sunday night, so our “daddy time” was limited. We decided to all go for a boat ride…….We rode to Beaufort to have lunch at one of our Favorite spots…Boardwalk Café…their lunch menu is very good and their ice cream is wonderful………..We left there and headed to the islands…We saw the Cape Lookout Lighthouse….the island that has the wild horses….The horses were actually standing on their hind legs battling with each other over one of the females……..It was just awesome….We docked at one of the islands and the girls played in the water…less scary than the big part of the ocean where the waves seem so menacing. The girls were laughing at everything…jumping off the side of the boat….looking for dolphins and sea turtles….It was great…….!! We rode for soooo long….Folden only knows one speed…….Really, really fast………..The only thing to do is sit still and hold on for dear life……….The sitting still part is bad for me….I usually think too much….Thoughts started going through my head….All the things I did wrong at the raffle….all the things that need to be done at the foundation….all the things I did wrong when the girls were babies………see the trend….That’s why I like to stay busy……..The trip on Sunday was a little different…..I started noticing things that look differently from the water as opposed to the road………I saw houses that had tons of debris piled behind their barns…not visible from the road but an eye sore from the water…….I saw homes with beautiful gardens behind their homes……not visible from the road but breathtaking from the water…I saw an old ship tied to a sagging dock……From the road, I suppose it would seem like a neglected, old boat…..but from the water, it seemed to have a history….something that had weathered several storms…..and even though it was broken and battered, it was still afloat….The sky is even prettier from the water……I think you are more able to recognize it’s vastness from the water…there are no obstacles, nothing to distract you from its beauty….just blue on blue…….Amazing…..I even saw one house….the same house that I pass by on my way to Morehead…From the road, it is a traditional, well kept home….Neat lawn, flowers planted in little rows….Nothing that would really catch your attention…but the back is painted PINK….Obviously, the owner has an artistic side and keeps it to himself………It stands out from the water….A little pink house with colorful furniture and “yard art”…..Everything looks different from the water….life is more peaceful….everything is grander…..and things that look one way from the beaten path….appear completely differently from the other side……I think God whispers to me at times…….. “Lori, that’s how Heaven is….What looks one way from your world, is completely different from up here…..When it seems like you have all your trash hidden from the world, I can see it….When you feel like life has taken its toll on you, those scars are just lessons and opportunities to learn….I know all your hidden talents…I even notice when you do things to glorify Me, rather than for a pat on the back from your neighbor…..From up here, things look really differently….Things are much grander and although its easy to find the beauty that I have created on the Earth…its nothing compared to the awesomeness up here….Hang in there, girl….There is an answer for it all….”……Okay, maybe I think too much….but even I don’t know where all this stuff comes from…..I don’t know who those little voices in my head belong to….I have a feeling, but no proof………….Whatever it is…..whomever it is….I’m glad they’re there…I continue to learn something everyday….

We have a couple of new families in with very specific needs……..I’ll bet some of you out there can help out………..

We are looking for someone with ties to the makers of Pediasure…….One of our families has a child, outpatient, that requires it as his main/only source of nutrition. I think Lisa said 6 cans per day………….You can see how that could get expensive…especially since this family has been in various types of treatment with this child since birth……Funds are extremely, extremely limited…….Certainly, someone out there can connect us with a Pediasure rep, supplier, CEO….It appears that Pediasure is manufactured by Ross Pharmaceuticals/Abbott Labs……..It would save this family in the neighborhood of $200-$300 per month……

Also, we are in desperate need of gas cards…….We have been hit hard lately with families that need gas cards for various reasons….Mainly, because dad is back home working while mom is at the hospital with the child….The family’s funds are limited and gas is almost a luxury….Is there anyone who has connections with a major gas distributor who could part with a few gas cards now and then?

Hope House is underway………We REALLY need materials………..Electrical supplies, building materials, carpet……..roofing….I KNOW you can help me with this one!!!!!!!!!!!!!!!!!!!!!! We are going to issue vouchers….If you want to donate a door knob…You just purchase a voucher for X dollars….When we get to the door knob stage, we will take your voucher along with your contribution and go get a door knob….Some of the local youth groups are going to help us sell them…..If you think of other ways to make this project happen……..PLEASE pass it on…………….

Well, that’s all the begging I have the strength for tonight………Wilson wants me to make cookies and Anna Gaites wants me to fix her hair so it will be curly when she wakes up……Sounds like a girls night…….Until next time……If you missed the last update…Please check out the “What Have We Done” segment……It will give you an idea of where your contributions have been going…Thanks for everything……Love, L.

Friday, July 15, 2005 7:30 AM CDT

Man, the summer is zooming by…..Its already mid-July and it seems the kids just got out of school yesterday……We are all still at the beach…….Folden is on vacation this week……He will have to go back to work on Monday….(That’s not such a bad thing)…..The girls and I have only been home a couple of times since May…….We are enjoying lazy days by the pool, the beautiful sunshine and doing exactly what we feel like doing…..Although we are here, not really participating in the real world, the foundation is still up and running, thanks to a few good friends and Lisa, the associate director, who is holding it all together………….Just a few updates since the last posting…….

The warehouse sale went well……My friend Laney, Kiona, (Deondra’s sister, who is volunteering for the foundation over the summer) and myself stayed up all night and worked on getting everything outside ready to go…….It was kind of fun……the quietness of the night……radio playing……the three of us laughing and talking about life…….I kept thinking…all of this work is going to help someone, somewhere…..its worth the hours involved……..By morning, we were pretty much zombies……We had several volunteers show up to help out……..We made around $1500 and sold 10 truck raffle tickets………..Not too bad! No one really showed up for the open house, which is fine….We will continue to find ways to get us out there and acquire the funding we need to help these families………We are still getting in new families everyday……..Our reputation is spreading and I can see that our efforts are paying off……..We can’t solve all their financial problems, but we have been successful at making a dent in them…………When you’re in a situation like that, every bit helps……….We have received bad news on a few of our families……Its heart-wrenching to watch these families struggle so hard for a cure, giving up everything in the process….only to have to watch their children take such a terrible turn…. I sure wish I could fix that………
Monday night, I did a presentation for the American Business Women’s Association…….ABWA is a national organization that strives to bring together businesswomen of diverse occupations and to provide opportunities for them to help themselves and others to grow personally and professionally through leadership, education, networking support and national recognition….I was an ABWA member for over 10 years……held every office and chaired most all the committees……..Their fundraisers are designed to raise money to provide area women with scholarships for continuing education………..When I was president, our recipients included two, very young, single mothers….one, right out of high school………I have seen this group of women do some pretty powerful stuff……..Not only do they help others in their efforts but the sisterhood is strong……..There is a bond among the members that I have not seen in many other groups………Membership is open and info can be obtained through your local Chamber of Commerce……I only spoke about 10 or 15 minutes but during the time I was there, several hundred dollars plus gas and phone cards were donated to the foundation…….Amazing! We had just gotten in 2 families that morning and as always, I stressed a little about what to do…….One family, ironically, needed gas cards so that the father could travel from Wilmington to Durham for visits………Just from the ABWA donations, we will be able to pay his gas expenses for several trips………Faith, Faith, Faith…………….

What else are we up to???? The truck raffle is going to be held at the Clayton High School Cafeteria on July 23rd…….Dinner is at 5pm and the raffle will start around 6.……..I only have a couple of tickets left, they are $100.…….The grand prize is a 2005 F150 Crew--Pick up………..Consolation prizes go to the first 19 tickets drawn……..included are a grill, a Truck tool box, custom bird feeder and bird house, a garden bench, grill tool set, coolers, cedar chest, signed Duke Basketball, Fitness training sessions, computer work hours, dinners at local restaurants, etc…………We are still waiting on a few more……………….We are also holding a miscellaneous raffle……..separate tickets can be purchased to win gift baskets, oil change, flashlight set, coach purse, cooler, salon products, etc…………Our sponsors have been so very generous……….We wouldn’t be where we are without the wonderful people and businesses in our area……….Some of the local talent will be performing…….and I hope to have a few of the Duke/UNC families around……..I would love for you to meet some of these wonderful people………….Don’t forget, meals are free for ticket holders, $6 for guests…………Holts Lake is doing a purely southern, Pig Pickin’………Please stop by……

The Me Fine Foundation is teaming up with the American Music Jubilee………A Southern Christmas Show will be held at the Historic Rudy Theater in Selma, NC on November 13th……Feel free to call us for reservations………There are only 565 seats in the whole place, so you can imagine how quickly they will fill up……..Folden, Blake, all our girls, mom, Kiona and I went to the Crystal Coast Jamboree in Morehead……..That was so much fun……..If you ever get a chance to see it, its worth it…….I hope we can pull off the same level of entertainment and talent as they did……………We are all looking forward to going back…….I believe the organizer is a Jo Co native………If you do stop by, tell Galen that Me Fine sent you!!! He is very approachable…….and a pleasure to talk with……..

I am working on another show featuring the fabulous Keith Henderson and Illusions of the King………April 1st, 2006----Johnston Community College……Paul A. Johnston Auditorium……We had so many Elvis fans at our last show that we are hoping to persuade the Hendersons to bring the whole band…….Wouldn’t that be great???? If you haven’t seen his show….Oh my goodness!!!! Its mesmerizing…….
The HOPE HOUSE PROJECT is finally underway…..For a while there, I thought it was never going to happen……….After we started the permit stages, it seemed that we kept having to deal with obstacles……….But the team leaders report that everything is in order………..Should you be interested in helping us get this house built……please contact Jennifer at PNARRON@aol.com …..We certainly need the help and all proceeds go where???? All together now~~~~~~“To the families with children at Duke and UNC Children’s Hospitals“……….Very good!!! You’ve been listening…..

Lisa and I have been working on a little list of accomplishments so contributors can get an idea of where the funds go……Just thought you’d like to know………….

What have we done?

The Me Fine Foundation, Inc. provides financial assistance and resources to the families with children at Duke or UNC Children’s Hospitals. Me Fine is recognized by the state of North Carolina as a non-profit organization. All donations may be tax deductible.

The Foundation’s primary objective is to assist each family while they endure in and out-patient care. Time and effort is devoted to each family. Families are different and each has their own set of needs. We strive to provide those specific needs. Parents are not required to fill out lengthy applications or divulge personal information. We ask for a profile for each child, a list of what a family feels could help them most and contact information. We evaluate each request based on history contained in their website, information provided by the hospital staff and personal visits. So far, our system has been successful. Families are not made to feel helpless in their situation but hopeful knowing that some relief is in sight.

The Me Fine Foundation, Inc. was officially established September 1, 2004. Friends who had followed Folden’s story generously donated around $20,000. To date, through continued donations and fundraising events, the Foundation has already raised an additional $50,000. The volunteers continue to pursue sources of revenue that will enable us to expand our assistance.

Having personal insight into the life changing challenges that these families face, the director of Me Fine makes certain that each penny spent will directly benefit the children. Operating costs are kept at a bare minimum. The headquarters has recently been established in Clayton, NC. Many businesses and individuals who are genuinely interested in the success of Me Fine donated the bulk of the office equipment and furniture. Salaries are not offered to ANY of the officers or board members. Accounting and legal services are also donated at no charge to the Foundation.

Many, many families have been assisted in the few short months since the Foundation’s incorporation. Our reputation as an organization that can and will get things done is beginning to spread. Many families are referred to us through friends and family members. The hospitals also offer the Me Fine Foundation as a resource to patients. Several thousand dollars in various types of assistance has been offered to the families with children at Duke and UNC. Accomplishments include:

A very successful bone marrow drive. 2 participants have already been contacted as matches for patients in need of transplant. Platelet donations surpassed an American Red Cross record. Platelets are crucial to survival for a transplant patient. Many families across the country were effected by this enormous show of support.

A record breaking donation to the Duke Pediatric Bone Marrow Transplant Unit-Family Support Program. Supporters raised nearly $20,000 to assist families on the unit.

A safe means of transportation for a single mom. A car was provided for a child using public transportation to get to clinic visits. A transplant child is at extreme risk of infection and should not be exposed to the types of germs that are present on a bus. A mere cold virus or chicken pox is deadly to these children. Duke nurses, concerned for the child’s welfare, contacted Me Fine for assistance.

Christmas gift collections for many families. Several area churches and businesses were contacted to provide gifts for entire families who were spending the holidays at the hospital or in out-patient housing. Complete lists were collected from each family. Each and every item on the lists plus a few “extras” were either donated or sponsored by Me Fine.

A Christmas Toy Drive for UNC inpatients. UNC staff asked the Me Fine volunteers to assist with toys for the children who were going to be in the hospital during the holidays. The website was updated asking for participants. Enough toys were collected by the website followers to ensure a wonderful, unexpected Christmas morning.

Successful interventions helping families to avoid foreclosure and eviction. Many families lose their jobs and income during treatment due to the requirements of intensive, long-term stays in the hospital. Me Fine assists families with many of their expenses. Many families have found assistance through Me Fine just in time to save their homes.

Laptop donations. Me Fine volunteers pride themselves on special attention to each family. Two children were provided with laptops in order to help them stay in touch with friends, complete homework assignments and pass the endless time during long, inpatient stays. Our goal is to eventually provide a laptop for each pediatric room in both hospitals.

Completely renovated a sub-standard home. The Pella Company in Greensboro teamed up with Me Fine and completely renovated a home for a single mother with 11 children. The mother had taken in 8 foster children, one with neuroblastoma, and subsequently lost her job due to the demands of caring for a child in long-term treatment. Financial means were limited for the family. The house was repaired, recarpeted, painted and supplied with new beds, furniture, appliances and lighting. The kids received new clothing, toys and shoes. The home was stocked with food and long term food sources have been secured. Mom has been assisted with monthly bills and the family is beginning to get back on their feet. Me Fine volunteers continue to communicate with the family.

Provided weekly transportation to clinic visits. One of the UNC families, who had received financial assistance several months earlier, contacted Me Fine in need of transportation to clinic visits. Dad lost his job due to time off required to get his son to the weekly treatments. After acquiring another job, he contacted us for assistance. A family in the area was contacted and able to provide the transportation needed.

Providing meals to Duke families. Several of the website followers have committed to providing scheduled home cooked meals to the families on 5200.

Visits to families. Me Fine volunteers have recently begun to visit the families that we assist. Phone cards, grocery gift cards and more specific items are offered to the parents during these visits. Parents, particularly the ones without local family support, seem to enjoy a periodic diversion.

Orchestrated Disney trip for the family of a terminal patient. Duke staff contacted the Foundation for assistance with providing a trip for a family of four. One of the children has relapsed after several years in remission. His prognosis is not good. The doctors felt that the family would benefit from a small vacation before treatment resumed. Airlines and hotels were contacted and within 4 days, the family was headed to Florida for an all expense paid trip. The family reports that it was the most wonderful experience and a great diversion from what would be waiting for them when they returned. After several years of battling their disease, the family had no means to spare for financing such a trip.

The Foundation continues to follow and assist around 25 families. New families are coming in everyday. Living expenses, hospital expenses and personal needs are among our top priorities. We strive to provide a safety net for each family during their journey. With continued support, we can certainly make a difference in the lives of these families.

Long-term goals include, complete financial assistance and endless resources for each family at Duke and UNC Children’s Hospitals. The Foundation looks forward to providing out-patient housing for each family in need of assistance. The current housing costs each family upwards of $1500 monthly, plus utilities. This is in addition to any expenses the families are currently responsible for at home. Families lose so much during these journeys. More public awareness and support can ensure different results.

For more information on the Me Fine Foundation, Inc., it’s programs or to make a donation, visit our website at www.mefinefoundation.org or call us at 919-359-2030. Links to the families’ journeys can be accessed through Folden’s journal at www.caringbridge.org/nc/folden.
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I probably lost you somewhere in the middle of all that info……..But thanks so much for checking in………….It really means the world to us…….For those of you who still want to help, but don’t know how……..Please pass our information on to whomever you think might could make a difference through funding, resources, advice, etc…….We’ll be around for a while and need all the help we can get……….

My next speaking presentation is August 21 at a church between Wilson and Kenly……….I will post the specifics as soon as they are available……….

Some of you have asked for a copy of one of my speeches……..Below is most of the presentation for ABWA in Smithfield………..Thanks again for all you do………I love you all……………L.

ABWA…..July 11, 2005

It is such a privilege to once again stand behind this podium among so many wonderfully talented and dedicated woman. I have followed your successes for quite some time……always quietly cheering you on….I was an ABWA member for over 10 years….I held every office and chaired nearly every committee……Like many of the other events and challenges in my life, I think ABWA helped define who I am….

I remember so many special moments during those 10 years…..but one particular moment stands out……one pivotal moment that will sum up all the rest……We were in Charlotte for one of our conferences……The entertainment for the evening was karaoke in one of the large meeting rooms in Adams Mark, downtown….We were all pumped from the seminars and speakers…It was early evening and we were beginning to loosen up a little……learning more and more about each other as we began to relax and let our hair down a bit…...The room was full and buzzing with conversations among the women………….Several ladies stepped up to the stage and sang….Some were actually pretty good….We were all just having a great time…daring each other to take a stab at the microphone…..There were no takers among our group…..At one point, a shy young member from another chapter found herself on stage in front of all of us….I could tell her sister members had persuaded her to try it out…….She was a little shaky and certainly not prepared for the music to begin……She sang a few lines and I could see her stress level beginning to rise……Her face was as white as a ghost, her hands were shaking as she held the microphone….her words were inaudible but she was still standing there…trying her best…..It was obvious she wanted the floor to swallow her up….Suddenly, I heard another voice or two in the background….then another and another…..before long, the whole room was filled with singing……Women were standing on chairs, gathering in groups around the stage and each one of them was singing the words to the song as loudly as they could…….This shy young girl standing on stage, embarrassed beyond belief was now showing us her stuff…….She had the most beautiful voice, echoing around the room loud and clear…………all of us backing her up……..It sounded like a concert…..and she was the star………….I will never forget that moment……..what a difference can be made with a few good friends…………..

One would wonder why I would walk away from a group of people who I admire and value so much…….and an organization that I believe in completely……..I was single and on my own when I joined…..I participated for many years…during a time when I made my own schedule and abided by my own rules….I soon found myself married, with a newborn baby and another one on the way…….Although I was married to someone that I loved very much….I didn’t like him at all…..We were living parallel lives….our priorities were terribly out of sync………I felt overwhelmed and lost…..Nothing mattered to me anymore….Nothing seemed to have significance…………I lost touch with everything that I held dear and focused on my two children……..Fortunately for me, my life was not meant to continue in that direction………….Circumstances caused my husband and me to reevaluate our relationship……to actually redirect ourselves and learn to depend on each other………..My daughters, only a year apart, were growing quickly and soon afterwards, my son was born……I had the fairytale life……..3 beautiful children, an incredible husband, good friends and a life that I once again enjoyed……………I had it all!

My son was diagnosed with acute myelogenous leukemia in May of 2003.…….We went through hell and back as we were thrown into the world of childhood diseases………..children all around us were so sick……..not out playing and enjoying life but fighting for their very existence………..Parents and caregivers were losing everything they had in order to provide the necessary treatment for their children………I saw so much pain and so much suffering……….I saw way too much…….so much that it still haunts me and at times even makes me question God’s whole existence……..My perfect world no longer existed………For 15 months, I watched my son suffer through deadly treatments…….painful procedures…..and unspeakable side effects……..He received several rounds of Chemotherapy at UNC but relapsed shortly before Christmas just a few months later………He survived 2 bone marrow transplants and intense radiation at Duke within an unprecedented 2 month period………My son went from a beautiful, blue eyed cherub, full of laughter and excitement to a mere shell of a child…….He was nearly unrecognizable……….People tell me that God won’t give you more than you can handle……..No normal parent can handle what I saw on 5 children’s or 5200.…….No normal person can walk those halls and not be affected………..I guess you would think that through all that grief and heartache…….loss and suffering……..that I would end up bitter and withdrawn……..You would think that I would spend my time asking why and looking for someone to blame………but I don’t see it that way at all…………..Sure, it hurts beyond belief to live day after day without my baby by my side……..There is not one minute in any given day that Folden is not on my mind……….I miss him with every breath that I take………but I truly believe that the journey has only begun………….I believe that I am the luckiest mom alive……………God gave me this perfect little boy……..He knew he would take him back in just a short time…….but for the time that he was here……he was mine…………I can name hundreds of people that probably deserved him much more than I did………but God gave him to me to love and protect………God knew that my family and I would see him through his time here……….and when his work was done………we would carry on……….God knew that we would remember all we saw………the experiences that the children had to endure and the challenges their families would have to face…………..and he knew we would give it our best shot at doing something to make a change.

I believe everything that I have experienced in my life has been only a lesson….a piece of the puzzle….Every challenge that I have faced, whether big or small….every hurdle that I have overcome, every victory, success and failure……..It was all designed to bring me to this point….

Looking back over the past two years….I can see things that maybe another person might not recognize…..It may be my face that is out front…….but that is not all that is there…….Through the whole journey, someone was always behind me, holding me up……..When my son was diagnosed and I had to be separated from my children, …..my family stepped in to raise my girls…..I never had to worry about them being safe or cared for…….When I thought I would lose my mind, someone was there to hold my hand….When I was hungry, or tired or simply too exhausted to take another step, someone was there…….When I finally accepted that Folden would not survive cancer and I had to plan a funeral for my 2 year old baby….someone was there………When I had to come home after over a year of being away, someone was there……I was never alone……..So many parents that face the same journey as I did are not nearly as lucky…..Most families have no support, no one to lean on, simply----no one….My friends, my family and even strangers carried me through the whole ordeal……….and I intend to do the same for the others who will face the same journey….

My family, friends and I have started a foundation in memory of Folden. Me Fine was named for a phrase often muttered by my 2 year old……….We would say, “Foldie, How are you today,” or “Foldie, are you hungry”, “Are you tired”, “Do you have any boo boos”……..“No Mommee………Me Fine”………It just seemed appropriate…….Folden had all of us at his beckon call….He knew we would lay down our lives to make him happy……….but he just wanted us to sit with him……he wanted us to be okay………He knew if “me fine” then “we fine”………….and he reassured us in his own way.

The other night I caught the last part of an interview with Larry King……He was speaking with the Reverend Billy Graham………He asked Rev. Graham “Why does God send us so much grief…..so many catastrophes, tsunamis, war, destruction, disease?”………..Billy Graham answered, “I don’t think God causes it……I think he allows it to happen“…..Larry King asked the same question I have been asked at least a million times…….”WHY?”….Rev. Graham simply replied, “I don’t know, but when I get to heaven, I’m going to ask Him….”

Larry went on to ask what bothered him the most in today’s society……..He replied, “Poverty“………He said that his son and his organization had raised several million dollars for the cause and he himself and his organization had raised several more……..but it wasn’t nearly enough…It didn‘t even make a dent in the crisis…He said he felt that God expected us to do what we were
capable of doing…….not what was easy or convenient…….He didn’t expect us to single handedly save the world……….We should just all do what we are capable of doing……….That statement effected me profoundly……Do what you are capable of doing…………

I have met so many families along the way….All with the same story………They are losing all of their material possessions in order to care for their child……..They lose their jobs due to the lengthy stays in the hospital……they lose their cars, their homes and a great deal of their dignity……….Their families are separated, visits are limited and I have seen many of them lose their sanity……I know that I can‘t change what their children have to endure…….If I could, there would be a beautiful little boy standing beside me right now….but some things I can change…….Through the Me Fine Foundation and its supporters, we can provide home cooked meals…….we can assist financially with parking fees, gas, out patient housing, toys, and even help out with the expenses incurred back at their homes……..We can provide transportation for family visits……whether locally or across the country…….We can provide support, a shoulder to lean on………..There is so much that we can do….and through the generous support of our local community, volunteers, and extensive resources, we will continue to do what we are capable of doing to help these families………..No other foundation in the country can boast our success in such a short period of time………No other foundation is as willing and able to respond to a family as we have done…..We have no limitations, no red tape, no lengthy application process………We have so many supporters working inside of the hospitals, we can gather our information and assist a family literally within hours……We have received testimonials directly from families, hospital administration, doctors, nurses and even friends of parents who are aware of our story……We have helped many families right here at our own back doors…….……and we have only just begun……...We are going to see this thing through……We are going to help as many people as we can…….raise as much money as we can…….We are going to bite off more than we can chew……..get in over our heads………whatever we are capable of doing……….and I know we’ll be okay….I may be the one out front, but if you’ll notice, there will be a few good friends in the background singing to the top of their lungs……….

Thank you so much for having me here tonight……I wish you so much well deserved success……..I thank you for the difference you have made for me and the other women in our community who continue to benefit from your efforts……………

~~~~~~~I added a few more links.......Please check on these special families.......~~~~~~

Wednesday, June 15, 2005 8:49 PM CDT

Our open house and warehouse/yard sale is scheduled for Saturday, June 25 at 7am...........We have a lot of great stuff to liquidate...........We are hoping to raise enough money to purchase gas cards, parking passes, (yes! The families have to pay for parking at both hospitals...it is VERY expensive).......and maybe if we're really lucky, a laptop to loan to the families........(since we haven't been successful at getting enough for each room...YET!) Most of the money will go to stocking the lending closet.....We are starting to get many requests for the items that we have.......Many items are low and we want to have anything available that the families need.....Please stop by and make an offer........or stick around and help out........Our office will also be open......We would love to see you there.........Volunteers meet at the Me Fine Office, 305 East Main Street-Clayton 919-359-2030......at 6am........sale starts at 7, open house at 8!!!!

The truck raffle will be held on July 23rd at the Clayton High School Cafeteria....at 5 pm.......Dinner is free for ticket holders.......additional meal tickets can be purchased for $6.00.......There will be opportunities to participate in other raffles....Our consolation prizes are looking great....not as good as the truck, but close!!!

Take care....and continue to pray for the kids at Duke and UNC......I love you all!!! L.

Monday, May 30, 2005 1:38 AM CDT

Wow…Its late and its quiet in the Lee beach house…..Folden spent the day fishing with his friends…the girls hung out with Aunt Tammy, Uncle Blake and their girls….everyone seems happy and thrilled to be out of school and away from schedules and homework……I have been a little lazy…just spending the days curled up on the couch or beside the pool……today, I did hang some wallpaper that has been whispering constantly….get busy….do something productive….it now hangs silently on the wall…Thank goodness…..Now, I am hearing the paint brushes calling me to paint my bathroom……Maybe I’ll get to it before the summer is over….There is just so much that I want to do….I have missed 2 summers and you know how things can pile up….One thing I am accomplishing though….My book…..No, I don’t think it will be a best seller but maybe it will shed some light on the inside world of childhood disease….the emotion, the insecurities, the grief and even the blessings……..I want other parents, especially mothers of these children, to know that the odd and almost shameful thoughts that go along with the journey are normal……I want families that are new to this path to know what to expect…….Its all I have to offer…..experience.

I have been working on the first chapter….and I have been reevaluating my life as a whole. I have realized that God has put so many people in my life…both good influences and bad…..but all equally important……God has been grooming me my entire life…..I am so thankful for my experiences in life….I am especially thankful for the people who have been placed in my life to guide me along the way….Some have been with me from the beginning….others jumped on board mid-stream….and others are new to my world…..One of my special mentors emailed me an article written by Ben Stein. I am not necessarily a Ben Stein fan but I was taken back a little by his words….He was giving his thoughts on what it takes to be a hero…..What is a hero? We all look up to gifted athletes….talented stars….the president…..etc…..I wonder if trying to emulate a person with a God given talent or just luck is the direction we should be going in…..Obviously, firefighters, police officers, soldiers and the like are risking their lives to protect us….These people are heroes without question….But not all of us are capable or even willing to become one of these incredible people. So where are we needed….What is our calling….just normal, regular people……….So while I was hanging wallpaper, I thought about what it takes to be a hero….and all of us have it in us. All of us are put on this Earth by God to accomplish something. When you think about all that goes on in this place, you have to remember that God loves us…..He wouldn’t want us to suffer or worry or hurt…….but we do…..Why? God can change anything….He can make anything possible….why doesn’t he? Well….after about the second roll of wallpaper and a few ugly words….I thought more about our purpose…..There has to be something that I’m missing….God could make this a perfect place if he wanted to…..He loves us……just like we love our children….We are sad when our children are hurt or if something makes them sad…..God loves us like that…..So wouldn’t it make sense to think that this whole mortal thing is merely a learning experience….a growing, maturing phase that we must go through in order to make eternity better in some way…..God having a divine plan suddenly makes a little more sense to me…..Its simple….It doesn’t make sense. Its not supposed to. We are here to learn and grow…..to make the best of our blessings….or not…..To be happy and content….or not…..Josh says God gives us free will….Free Will…..That is a big thing…..To freely do whatever we choose…..So…..do we take this free will and our blessings and make something out of it or do we sit around and bitch about what we don’t have and how we were shafted by the events in our lives….??? I guess what I am trying to understand is…..does God put all these obstacles in our way in order to force us to grow…..or is he punishing us for something? I think its all a lesson. I think the things that happen to us are definitely for a reason….either to teach us something or to teach someone around us……I realize God took my son….and for that matter, my brother, my dad and many others that are very important to me……I don’t think that is the end of my lesson….I think God is trying to lead me somewhere….He is trying to force me to use my blessings to make a difference…a change…….It won’t take away the grief but isn’t that what Heaven is for???? That perfect place where we go to rest after all this hard work…..A beautiful place to be reunited with the ones we love…..a place where God will look right into our eyes and ask….Did you do what I asked???? What did you accomplish???? Its like we are all earning keys that fit into a lock…..The lock is attached to a huge treasure next to God’s throne….We have to do what we were designed to do in order to get the keys………and when we all get to Heaven, God will open that chest with all those keys…..All the keys have to be there…..or it doesn’t work…….and when the chest opens….the treasure is beyond belief and makes Heaven even more incredible…..I can almost see everyone in Heaven shouting each time someone figures out their purpose….“Hey guys!!!! Look!!!! Today we are one key closer!!!!!” So now….I go back to how to define a hero……A hero is a person who selflessly and humbly acts beyond their own capabilities to make this life worth living. There is definitely a hero in all of us…..I know that sounds like some country song….but it has to be true…..A hero is a person who feeds the hungry….warms the cold…..rescues a drowning animal…..pulls a mother from a burning building….stops a crime…..gives to the building fund at their church…..picks up the mail for their elderly neighbor…..volunteers for their child’s school…..listens to a friend…..passes a pair of shoes on to a less fortunate child….donates to a cause…..shares something…..teaches their children to be heroes…….Its all there…..I really don’t think God needs us to do what we can…..I think he wants us to do more than we ever thought we could…..believe in ourselves and our purposes so much that we go to any lengths to make something worthwhile happen….make a change….make a difference….and ultimately make something better for someone else……That must be what a hero is……Otherwise, we would all be doing the same thing……..We all have an individual purpose….a certain thing to accomplish…..a particular key to earn……What is it for you????

Okay….enough with the sermon……I really do write it all down so that I can process it…..not for any other reason…..Sometimes, I have to wonder why you all still check in……Manic entertainment?????

What else have I been thinking about lately? I still miss Foldie Lee…..I have started sitting outside at night sometimes and just talking to him…..I know he’s there….I know he’s close by……I wish I could just see him….hear his little voice……God! I miss him so much…….I miss him more everyday……..He is still the best part of everything I do……

Foundation news……….

We are in the middle of another fundraiser…..We have a 2005 White Ford Pick up….Crew….4X2.….We were offered a really generous deal by Capital Ford in Raleigh….……….We are going to raffle it at a pig picking celebration in July. We are going to offer only 600 tickets at $100 each…..The first 19 tickets drawn will receive a great consolation prize…..We have a stainless grill set….dinner gift certificates, bird feeders, bird houses, hopefully a grill, outdoor equipment, (weed eaters, blowers, etc)……Pretty good stuff…..The 20th ticket drawn will receive the truck……We will also offer opportunities to participate in other, smaller raffles……I think it will be a nice event…..If you would like to get involved or purchase a ticket…email me….the tickets are going quickly…….Ampa and Blake have been selling them for about a week now and I have been amazed at what they have accomplished…..They have already started dipping into my stack……I will send out invitations to ticket holders for the pig picking…..their meal will be free….additional meal tickets can be purchased at the door……..I would love to see some of you there…..

Next thing…….I want to see you at the Relay for Life at JCC this weekend……I will be there Friday night……You know how important Relay is so I won’t even go into that whole spill…..

We have been overwhelmed with the Lending Closet…….We are getting items from all over the country……..Our office is so small and we are completely out of room…..So, we have decided to have a Me Fine open house and a warehouse sale sometime in June…hopefully. We are going to liquidate as much of our inventory as possible and get more of the things in that are in high demand….We also would like to add a couple of laptops to our inventory……those are so wonderful to offer to the kids, especially the teenagers, who miss their friends and simply need a diversion……We want to stock up on more out patient supplies….Clorox wipes, paper towels, diapers, disinfectant soap, medical trays, rolling carts, metal trashcans…etc…etc….etc………..We have several families in who desperately need help paying their outpatient housing……….That runs upwards from $1500.…….We want to include more gas cards and more grocery store gift cards……….Trimming some of our overstocked items will certainly make room for these necessities………and we will be more able to afford them as well……..I will provide more information as plans become more concrete……..

We are still getting in new families everyday……..Lisa Brown, our associate director, has begun to visit Duke about once a week…….She has become a great friend to many of the families we are currently assisting………I watch her sometimes and think….now that’s a hero……She has no direct connection to Duke or UNC…She has two beautiful, healthy children and could walk away from Me Fine without a second glance…..Each week, she takes on more and more responsibility…..Many of the moms call to talk to Lisa…just to tell her how their day went….or to update on one of the children down the hall……Lisa has been with Me Fine almost since the beginning…..Pray that she will continue to find the strength to walk with some of these families while they are in NC……I would be lost without her…..Lisa is definitely another one of my blessings………

One last thought and then I am going to try and go to sleep………Its Memorial Day weekend and you can imagine what the traffic is like at the beach….I was sitting outside today watching all the golf carts pass by….families outside grilling or planting flowers….many were headed to the pool or just riding bikes………I thought to myself……I wonder if these people actually realize what they DON’T have…….They are here so they don’t have a funeral to attend…..They don’t have a terrible disease…..They aren’t stranded by the road with a flat tire….they aren’t being raped or beaten…..mugged or hurt…..They aren’t afraid for their lives……They aren’t hungry, cold or lost……They aren’t alone….stranded in an airport….lost at sea…..They aren’t sitting at the end of a gun barrel trying to find the nerve to pull the trigger…..They aren’t looking for an abducted child…..or watching their mother die…..They aren’t in the middle of a war….facing down a terrorist or in prison………They aren’t at work….or being rained out…..and they aren’t at Wal-Mart!!!! I’m so thankful for the things that I don’t have……the things I don’t have to worry about………….and I’m thankful that each of you continue to check in and offer your support as we continue on this journey...........All my love, L.

Sunday, May 22, 2005 4:28 PM CDT

…What a bittersweet day. Its 3 o’clock on a Sunday afternoon…Coastal winds are blowing and I am poolside, in the warm sunshine…watching my 2 beautiful daughters enjoying the water. They are playing shark attack and eating Lunchables….laughing at each other as they successfully complete a canonball…water splashing all around.

2 years ago today, I had a perfect life. I had a 17 month old son along with these two little girls. He was a happy little fellow who enjoyed the beach as much as I do. We had just sold our house in Clayton and had the car packed up ready to move to the beach for the summer…We were just waiting for the last few days of school to be over. It was all planned out. The refrigerator was stocked, pool toys in a basket beside the door and all the mail forwarded. But the unexpected happened. My son was suddenly diagnosed with Leukemia. Leukemia???? That was a word that every parent feared…just like a child worrying about the bad monster under the bed or the boogie man hiding out in the closet. Every parent had those fears…but none really thought it would actually happen.

As I sit here…knowing what the possibilities are….I feel hesitant to once again plan this fabulous summer with my family. I have been too cautious to even buy groceries for the long term. I don’t want to jinx myself. I feel like I have taken every precaution…I have had my physical and so have Folden and the girls. I know that nothing is predictable in this life….absolutely nothing….and I can’t cover all the basis…Its just an eerie feeling…

I realize how much I have missed by being away for so long…The girls are swimming so well….They can swim the length of the pool and do flips and dives….things that Folden and I didn’t teach them…or even watch as they learned. They had a separate life for nearly 2 years…It makes my heart ache to think about what they thought of me during my absence.

I look around at these healthy children….15 or 20 children splashing happily in the pool…carefree…Parents watching attentively as if the only danger for their children is getting in over their heads…I realize that ignorance really is bliss…

What even bothers me more is the hundreds of families across the country who would give nearly anything to feel the sunshine on their skin or to see their children once again splashing carelessly in the pool…I grieve for these families….knowing the heartache that they face….the hopefulness along with the helplessness…….

I hope you all have a wonderful summer…I hope you realize from time to time, the gifts you have at hand…and how priceless each moment is with your family…..and the ones you love…………..

We have started another fundraiser….We are selling 600 chances at $100 each to win a 2005 Ford extended cab pick up….Call the foundation at 919-359-2030 or email me at LoriKLee@aol.com for ticket info….

Construction on the Hope House has finally begun….Please email us at info@mefinefoundation.org to help out…..

Love you all and thanks for continuing to check in…..I will be speaking in the Wilson area in August for those of you who have inquired….I will provide more details in future updates……L.

Wednesday, May 4, 2005 7:18 AM CDT

Good Morning…….I am sitting here this morning, preparing myself to bury yet another member of my family….So many thoughts of my grandmother’s life keep passing through my mind. My grandmother was Dessie Strickland Evans…a very beautiful woman…quite reserved but a very good person. She was the mother of 4 children, including my own mother. She had my mom when she was very young…She was married to an army man in Newport News, Virginia…I suppose the climate in those days took my grandfather away from his wife and newborn baby…After 3 years old, my mother never saw him again until her early 30s….She devoted a lot of time to the search of a father she never knew and luckily found him living in Mississippi…He died 2 months later…..

After he left my grandmother in Virginia with my mom…my grandmother came home…..after several years, she remarried and made a family with her new husband and my mom. They had 3 more children together. They were farmers and I remember going to Granny Evans’ house…small country home on a hill….kitchen filled with the smell of homemade biscuits and butterbeans…..she was really good at peach jam and had some around at about any time…There was a chainy ball tree in the back yard and some sort of aged oak tree that we all played in……She kept children to subsidize their income….She, too, lost a son….He died in a drowning accident…He was around 20 years old…After granddaddy died…(mom’s stepfather)…She moved into an apartment in Smithfield….She told mama that she was happy there and enjoyed her friends and neighbors very much…..Although I have only met the ladies once or twice, I can tell you all their names….She had a nurse that checked on her each morning…Her name is Mae…..Granny didn’t need a lot to make her happy…A comfortable chair and a tv big enough to watch without her glasses………She enjoyed the radio that Folden and I gave her for Christmas……You would have thought the symphony played live in her bedroom each night…….She found so much enjoyment in a simple life……..I know she was happy…….She had never really even been treated by a doctor until about 5 years ago…No major medical problems and really healthy for a woman in her 70s….My family ages well……..My mother received a call at work Monday morning….The maintenance fellow found her lying on the floor…She was gone….No sign of pain, struggle or discomfort….She was resting peacefully on the floor….apparently heart failure or some other natural causes……My mom is a rock…….She has been all my life…….She has endured so many struggles….more than the average 55 year old……She has lost her father, her brother, her son and grandson…….she has buried her grandmother and grandfather who cared for her for many years…..She has battled so many demons….and yet she continues to comfort me in my loss…….She is what every daughter deserves for a mother……..I have watched her over the past couple of days…….I wonder if she is okay…I know she will miss her mother terribly……I can tell you what it’s like to lose a child…but not a mother…..I hope she can recognize all the care and love that she put into granny’s life…..making sure that she was safe and happy and in a place that she loved…..I hope she can see that her being granny’s daughter made a difference in Granny’s life….Death happens to all of us……..at one point or another………My prayer for you today is that you can live your life, in spite of the hurdles…..and be as content and genuinely happy as Granny Evans………..Take care………L.

Saturday, April 16, 2005 9:53 AM CDT

Dear Foldie,

Whew…you have kept us a little busy lately, don’t you think? I guess you thought we could handle it…I hope you think we are doing a good job….I miss you so much…….every minute of every day….My heart hurts a lot of the time…but sometimes, I can still feel the warmth of your hand taking mine…What a wonderful feeling…to know that somewhere, somehow, you are still with me….Anna Gaites and Wilson miss you, too…They always tell me that you sit on their shoulder….and even help them with their spelling tests….They love you so much…Daddy is doing okay…He has seemed a little teary this week….You have sent him so many new friends that love to fish…That helped a lot…Ampa and Gee Rose?……….Well, I do worry about them….Maybe you could ask God to spend a little extra time on them….They seem so sad all the time….

Thanks for all the angels you sent to Greensboro to help us out…That was such a wonderful experience. You saw their house, I know…What a mess…leaks, rot, unsafe structures…no beds!…Now, thanks to all the angels, Timothy has a beautiful new home with plenty of beds and no leaks!!! It looks brand new!! I know the mom is so happy…She calls me from time to time to tell me how much she loves her new home….Pella and company sure worked hard to make sure the house was in good condition…Mr. Darcy did a good job organizing such handy angels….I was so amazed at what those guys accomplished….in such a short time….and you know mommy had to decorate a little….Now, that family has a beautiful home from floor to ceiling…new appliances, bedding and plenty of food and toys….I think they will be okay for a while…Watch out for Timothy for me….He needs a miracle….

The new office is looking great…I am so proud of it….Alfred Williams and Company delivered us some of the best furniture on the market…No, I wouldn’t have ever put anything in there like that…I know the money I spend on office furniture only takes away from our kids….Thanks to Patricia and the staff at Alfred Williams for providing us with a comfortable office to work in….It is just beautiful and really reflects our mission and dedication….

The Golf Tournament went great….It was our first one and we will need to do a little work to make sure we do even a better job next year….but I think it was amazing…Wendy Philyaw, Billy Whitley, Stacy Burdette and Stevie Edwards with Reedy Creek worked overtime to make sure the event was a success….they sure accomplished that…We raised around $7,000.00.……..We sure needed the money….we are starting to get new families in everyday!!!!

Tonight is “A Tribute to the Legends”….Diane Bailey and Keith Henderson are award winning performers with huge hearts…Both have been instrumental in making this show a success……..I am so proud to be a part of it……I can hardly wait to see them perform….and you sent so many angels to help out…Our sponsors have been great and people from everywhere are purchasing tickets…Chuck is working hard on the program…That was a lot of unexpected work…but somehow, by the grace of God, he is going to pull it off…….I think I am going to go ahead and book another show for next year…What do you think????

We have had so many families in lately…That makes me so sad….It does help me to know that all this hard work has made it possible for us to help them out….I sure know how scared they are….I want to make sure their needs are met and their finances are in order…That part, we can handle….I just hope you will ask God to lay his hands on them and help them through the journey……Help them to find peace and strength……Me Fine will work on the rest…..The little boy that you just sent us….who is terminal and not expected to make it any longer than a couple of weeks….well you don’t worry…You sent him to the right place…..Trying to organize a Disney trip in 4 days is hard….but I am pretty sure he will be on a plane Tuesday morning….Thanks for all the angels you sent to help us pull that one off……..I am sure his family will never forget the experience….I am glad we could be a part of it……You must have been really confident that we could work it out in such a short amount of time….Everyone else said it couldn’t be done……….I knew better……….

Sorry its been so long since I updated your page…but you sure have kept us busy….I think we have been successful at all that we’ve done…Sometimes, things don’t work out quite the way I think they should….but you always send us a really good “Plan B”……….I wish you were here to see it all………I guess, in a way, you still are….Your little light still burns in my heart…….your spirit keeps me going……So many people have come together to make Me Fine the success it is………We will continue to do what we are here to do……..I look forward to seeing you again…….Some days, I think it can’t come soon enough………but I know that you left me a lot to do and I plan to do it in the best Me Fine style…..I won’t let you down……and when I am finished, I will see you on the other side……..Mommy loves you little buddy…….and I miss you with every breath I take……..but don’t worry….”Me fine, too!”

All my love,

Mom meeeeeeee

Monday, March 28, 2005 8:18 PM CST

Hello Everyone!!! Isn't the weather beautiful??? In spite of the occasional shower, it seems good to feel the warm sunshine on my skin......The kids and Folden and I are all at the beach......a much needed break from the normal daily responsibilities........

So much is going on.....I thought I would just update a little about the Foundation and let you all know that there are still opportunities available to help out......

"A Tribute to the Legends" is April 16th at the Johnston Community College, Paul A. Johnston Auditorium......The show begins at 7:30 and the tickets are $15.....unfortunately, we have only a few tickets left...This show is the first in our benefit series......Starring the award winning, Keith Henderson in "Illusions of the King"....his perforance highlights the career of the legendary, Elvis Presley......Diane Bailey, formerly of the Eddie Miles theater in Myrtle Beach, will open with "Sweet Dreams, Again"....America's #1 tribute to the celebrated Patsy Cline........Call us at 359-2030 for ticket availability......

The "Me Fine" Golf tourney is April 8th.......We are still looking for sponsors, teams and volunteers....there will be a silent auction...items include an autographed Coach K ball among other sports collectibles.....

April 1st, we begin our Greensboro family mini makeover.........Businesses and volunteers have come together to repair the home of a mother of 11....One of the children has neuroblastoma.....I have reported on this family before, for those who continue to read the journal consistently.....We have paint, painters, floors, floorers, stove, dishwasher, toys, bikes, clothes, food, freezer, beds, bedding, hotel accommodations for the family, and so on......we are still looking for an air conditioning unit, a washer and dryer, several more volunteers, and another experienced group to help with the flooring....We still need a few meals for the family over the weekend and ALOT of prayers........!!!! I am so proud to be a part of this intervention....This is one of the most deserving families I have ever met......I feel blessed just to be a part of it.......If anyone feels led to help out......let me know......I don't think we will have too many.....I have been told that there will be TV coverage.....some of the local stations in Greensboro have picked up the story and expressed interest in covering it...We'll see........

I have had 3 new families in my local area referred to us.....3!!!! All different disorders, all headed to Duke or UNC.......Please pray for these families as well as all the other families experiencing this nightmare......Pray for guidance and strength......Pray that the Foundation can continue to make a difference for each of them.........

.......Stay tuned!!..................L.

Saturday, March 12, 2005 10:59 PM CST

Hello Everyone.....Just an update of the events over the last few days......

The foundation has secured a new office....We will be on Main street in Clayton, underneath Dannette Underwood's office...Our entrance is in the rear, beside Annie V's Flower Shop......I think the new address is 305 East Main Street......We will be getting a new number shortly......but as always, you can call us on the Me Fine Hotline at 919-278-8673.....Anyone interested in helping us move????

So much has happened this week.....I was scheduled to speak at the Phi Theta Kappa International Honor Society's Regional Conference in Charleston, SC this morning....To prepare, Laney and I went through all of our scheduled events, new procedures and contacts and tried to organize them in our portfolios....In doing that, many ideas came to mind as to how to get others involved. We contacted 94.7 WQDR, the largest country station in eastern NC, to include us in their public service spots.....and they said YES!!! Some of Laney's sources sent our information to the Winston Cup people......We are waiting to hear how that pans out!! Wish us luck!! We have the tickets for "A Tribute to the Legends" starring the award winning, Keith Henderson, an Elvis Presley illusionist and Diane Bailey, formerly of the Eddie Miles Theater in Myrtle Beach, as the legendary Patsy Cline in "Sweet Dreams Again"...We are so honored to have these two fabulous entertainers kicking off our benefit series. Tickets for the show go on sale Monday....The show is April 16th at the Johnston Community College, Paul A. Johnston Auditorium......We have already pre-sold quite a few....should you be interested, call us at 919-278-8673 to reserve a spot.....Wow! What else.....Oh!!! Laney is going to get back on the "Smiling for the Kids" project. If you've been reading a while, you will remember that Folden III started this project several months ago...Somehow, its just been pushed aside through all of the madness since September. Basically, patients can get a complete dentist quality bleaching kit and supplies for a minimum $100 donation....All proceeds benefit the Me Fine Foundation, Inc. and its mission to assist the families at Duke and UNC Children's Hospitals...Laney is going to contact some of the other NC Dentists in hopes that they will join the project....Its win, win........You get a new smile for a significantly reduced price and the kids and their families get to enjoy a few new things as well......The Me Fine Staff has been working overtime on a few other projects......You may be hearing from Lisa or Anita........They are charged up and ready to get these fundraising events off the ground.......We are in the process of producing our program for "A Tribute to the Legends"........We want to include businesses and individuals as well as the families at Duke and UNC. Should you be interested in purchasing a spot in the program for advertising, memorials, recognition, honorariums etc........Please let us know.....Space in the program is limited.....but you can include anything you would like.....pictures, business cards, a short paragraph about your own journey......we are open for your ideas......Whole pages are $100, half pages are $55, 1/4 pages are $30....to list a name on our survivor page, $10..........We are trying to keep our prices very affordable so that anyone that wants to be included, can be, without having to invest a lot.....All proceeds, as I am sure you already know, will go directly to the kids.......Its just another way that an individual or a business can make a difference……..I have added some new things to the Me Fine website……I don’t think it has all been posted yet…..but be looking for it soon…..Our new logo will also be included…….Let me know what you think about it………I am so proud of it!!! Gail O’Neil of G O Designs in Clayton provided us with a logo that really captures the spirit of the foundation and its supporters………..So far, we have received an excellent response from her work……

The event in Charleston was wonderful. Laney decided to go with me so that Folden could spend some time with the girls…They seemed to be needing some Daddy time…Laney and I left yesterday around lunch and had a fairly uneventful trip…We talked about new things that we could do to strengthen the Foundation…When we got to the hotel, we met with Gene Smith, the advisor for the Wayne Community College chapter of Phi Theta Kappa……..He has been working on a power point presentation that features 50+ children from Duke and UNC…”Break Away” by Kelly Clarkson plays in the background…..It is so awesome….I think it really brings out the fact that these kids are not “other people’s kids”…….They are just normal, everyday children……just like yours and mine…….I can tell Gene really worked hard on the presentation….Laney and I went out to dinner in downtown Charleston….I have a couple of favorite restaurants there and we visited one of them Friday night………(I didn’t think we were going to make it through the cab ride!!)….Dinner was great…..we went back to our room for some much needed rest………At about 2am……..I woke up…….and I could tell there was no way I was going to be able to go back to sleep………Marcella, Deondra’s mom, had called during dinner to tell me that after all this time……fighting so hard for so many months……..Deondra would be taken off life support tomorrow morning, (Sunday)……..It seems the complications from the transplant has taken its toll on her……..Please say a prayer for this family…….Deondra has a 2 year old brother, KD…….and an older sister, Kiona………I have had the pleasure of spending time with all of them…….KD and Kiona stayed with us over the Christmas holidays…….What an amazing family……..Its so unfair that this has to be the outcome of Deondra’s journey……..All she wanted was to be a normal little girl again……..I hope God remembers that when she gets to heaven………………..I ended up downstairs in the lobby……I didn’t want my sleeplessness to keep Laney awake………I sat on the sofa and listened to a few girls over in the corner talking about their lives and plans……….A really nice guy sat down across from me and struck up a conversation…….His name was Gerald…….I won’t soon forget Gerald……..Apparently, he had lived a life of chaos and unruliness. He dropped out of school in the 8th grade…….had some run ins with the authorities……..maybe drank too much from time to time………He showed me a picture of himself with blonde hair halfway down his back…….He went through a divorce as he was nearing 40.……..Something changed for him……..He went back to school and completed his GED AND received his high school diploma………He is a full time auto mechanic and is currently going to community college to earn a degree in the computer field……..He is a member of the honor society and he even shares his story with kids that are in some of the schools for “wayward” students…….hoping that in sharing his story he can redirect their paths…….Don’t you think that’s amazing……….I could tell from listening to him that he is trying to learn all the things he missed between the 8th grade and now………Now, THAT is an inspiration………Somebody out there “gets it”………….Rather than sitting around and complaining about how he never had opportunities or making excuses for the path he chose, he got up and changed it….and in the process, he is trying to help others behind him………………..…..Everyone has a purpose………

The presentation went well, I think…..I still stutter through some of my words and get teary at various points in my speech…….but all in all, it was a blessing to be there………..Gene’s addition to the presentation was priceless………..Afterwards, I met so many wonderful people………many were cancer survivors……..many were parents of healthy children……….some just offered a few words of encouragement……….others lined up to find out more about the Foundation………..many had read the website………..Phi Theta Kappa chapters everywhere have been working hard to raise awareness to cancer and the destructive path that it leaves behind……….They raised money and purchased gift cards while we were on 5200.……..Our local Goldsboro chapter has been organizing platelet donations……..they have set up a scholarship in Folden’s memory…….they have assisted the foundation in events, contacts and resources……..They also do a Cancer Symposium each year and invite organizations like Leukemia and Lymphoma Society, Relay for Life…………The Me Fine Foundation!!!……….all to participate in the education of our society in what can be done to prevent the disease or assist those who are having to live with it……….It was such an honor to be among this wonderful collection of people…….many different types of people………different ages, races, religions……………all working together to help their communities, their schools and the people around them………I am looking forward to hearing from them in the days to come………..

Today, I spoke with one of our Hope House organizers……..Someone had called her to see if she could get the Foundation involved with the family of a local 2 year old who had just been diagnosed with AML Leukemia………..I think that is so awesome…….We are working hard enough that other people, completely unrelated to the Foundation, think of us in these situations………..I worry about this family…..I know how hard it is to catch your breath in the whirlwind of the first few weeks after diagnosis……..What comforts me is knowing that if these kids are going to be diagnosed, regardless….at least there is a resource for assistance………both spiritually and financially……I am just so glad to be a part of it……..

One of the Phi Theta Kappa members brought up a very important point today and I thought it would be a good example to share with those of you who want to help, but financially can’t spare anything right now……..She said her parents own an older hotel at Atlantic Beach………She would be happy to donate a room from time to time to the families who need a little break from the whole hospital scene……..We will certainly take her up on it……We will just add her offer to our list of resources……When the situation arises, all we have to do is give her a call and set it up…….It doesn’t affect her parent’s business……..it really wouldn’t cost anyone anything and a family can enjoy a little getaway that they probably wouldn’t have been able to afford otherwise…………I believe there are a lot of good people in the world……..and the people that I have met really do want to help……..Its just a matter of tapping into the resources…….in putting it all together, a bunch of little things can become a huge, very successful thing…………

I guess that’s enough for tonight………after several hours of focusing without a lot of sleep, I think I need to call it a night…….I will regroup and go at it again tomorrow………I hope you all understand how much it means to me personally and for the success of the Foundation to know that you continue to keep up with us……….I think you will all be very proud of our accomplishments as we continue to grow and thrive…………

Sunday, February 27, 2005 8:25 PM CST

Hello Everyone……I know its been a while since I have updated…….but we have been so busy with the foundation and life……some things just go undone…….

The last time I wrote, Laney and I were headed to Greensboro for one of our “interventions”……We met a wonderful family…….The mother was loving and gracious………The children were well mannered and very welcoming…..The house seems to be in okay shape…(It was much cleaner than mine would be with 11 children)…..A gentleman from the Greensboro area met me there….He is working on getting some of the repairs done……I sure hope all that comes through for us……….It would be a huge accomplishment not only for everyone involved on the outside, but for the family………I really want to make a difference for this amazing group of people…….

The house is small……..3 bedrooms, 2 baths……a small living room and a small kitchen………Laney and I figured we could probably provide 4 sets of bunk beds and 2 small dressers for the 2 kids rooms………and then maybe a queen bed, dresser, etc for the mom’s room…….That would give everyone a place to sleep rather than on the floor…….So far, we have collected 3 sets of bunks and a queen bedroom suite……..People have come from everywhere to help us with this family………We even had a family drive all the way from Virginia to bring us some bedroom furniture and then turn around and go right back……..I have been left breathless at some of the generosity of people who are supporting Me Fine……….Glen Laurel, Clayton, Smithfield, people all over the area have supplied us with food, clothing, toys……it is so incredible……I just can’t describe it………I can never thank you all enough for contributing……..
We are still in the process of getting some of the materials together……..I have a company that may be able to get us some of their unclaimed supplies……Wouldn’t that be great…………?? Anyway, it’s all coming together and I am so proud of the Foundation, the people involved and mostly those who are using their resources to help us out…….

We now have a volunteer STAFF at the Foundation…….Anita Huffman and Lisa Brown have taken over the business department……They are also working on developing a system, keeping up with our correspondences and pursuing new avenues……….I don’t know where we would be without their input…..They keep us on track and running smoothly………You can reach either of them at mefinefoundation@aol.com …………..

Crystal Wall and Chrystal Jones have taken over the lending closet and all the inventory..(whew….just in the knick of time!!!)…..We have been so blessed by donations……I would bet we have over 1,000 items already and more are coming in everyday…We have so much stuff that we are looking for a bigger facility….Isn’t that great?? ……………..….What are we looking for??? We need good, new or used household items……Blenders, sheets, microwaves………anything for the home that a family might could use while they are living away from home for an extended period of time………Also, new toys………Clorox wipes, baby wipes, diapers, antibacterial soap, laundry detergent, paper towels, cleaning supplies, bathroom tissue, soap, shampoo………Should you be interested in donating any of these items, please email Chrystal and Crystal at lendingcloset@aol.com......... One of our main holdups right now is finding volunteers for delivery and pick up in Durham…….Clayton Fitness has been helping us out with most of it but I can’t continue to expect them to take time away from their business to get these things done…….Should ANYONE or ANY GROUP be willing to donate a couple of hours every week or so…….please, please call us……..We don’t normally have large orders, but occasionally it does happen……otherwise it is just getting the requested items to the families and picking them up when they are finished with them……….The schedule is very flexible………

Laney and I are still working hard……We have been doing presentations, group discussions, family interventions, advertising, and everything we can think of to raise awareness………Folden and I have been to Virginia for a benefit for the Happy Trails Foundation……..This foundation was founded in memory of Ryan Smedley………They are doing a lot for the kids at Duke…….Please check in on Kim and Larry……Ryan’s link is at the bottom of the page……..In two weeks, Folden and I are going to Charleston to do a presentation for Phi Theta Kappa…..Our local chapter has been more than generous to our cause….We are hoping to at least just spread the word…….We want everyone to know what goes on in these hospitals……what a family goes through……….and mostly, how we can all help a little and make a huge difference………Folden even spoke at one of our recent engagements………I was so proud of him………He told about our journey, what happened around us and how much one person can make a difference………I wasn’t expecting him to talk…..but he did and even I listened………

Folden, by the way, is doing much better……..He has started restoring an older boat out in his barn……….We have started going to my childhood church and Folden and Preacher Josh have become very close……..Josh is very young and has a lot of the same interests as Folden…….Folden can just be himself……….he can ask the tough questions…..he can be mad at God…….he can even dispute the divine Plan…….but Josh seems to always talk him down, answer his questions and settle his thoughts all in one breath…..God sure does work in mysterious ways…….He sent us a pastor that loves boats and fishing……fits right in with the rest of the guys and fulfills his ministry…….what more could we ask for……..???

As for me………I think I am doing okay……..I seem to have more down moments………more time hurting for my son….wondering where he is……what he is doing………..time wondering if he can see me……….I miss him more everyday….I feel like I am always at the verge of tears…….even when I am laughing………My heart breaks at the sight of “the Little People” toys…….the sound of Shrek’s voice or just a glimpse of Nemo…….I ache when I see a bulldozer beside the road…….even a cute 2T outfit in a catalog……….He is all around me……..I still don’t have very good dreams……..Just the other day, I dreamed that Folden IV and Wilson had been kidnapped……they were on the news……….pictures were displayed of their bloody, beaten little bodies……….I woke up in a terrible sweat……..actually thankful that Folden was taken by demons that I could not have controlled……a disease rather than an evil being that stole him out of my arms and caused him unbearable harm……..I still don’t understand why he had to leave me……why he was only allowed to be mine for such a short time…………but yet, I know there are parents out there who have to live with endings much worse………I pray for them……..I know my own journey is nearly suffocating……..I can’t imagine it being worse………..

Folden and I have even discussed having another baby……..I am 38 and it seems that its now or never………We have thought about it for quite sometime………..There are days when I can almost feel a new life in my arms……Tiny fingers wrapped around my hand……..Little eyes seeing the world for the first time…….amazed at all the sounds and smells in this new world………..but I finally came to the realization that maybe that would not be such a good idea……My girls need us so much……they are growing quickly…..Wilson just turned 8 and Anna Gaites will be 7 in just a few weeks…..They are settled and happy………beginning to adjust to life without their brother…….They still talk about him and cry sometimes when they think about him…..but they are adjusting probably better than the rest of us………..I think it would be unfair to take away any of the time that I could spend with them………….I think it would also be selfish to bring a new child into the world, knowing that I would be so freaked out at the smallest sniffle…..every little bruise………every fever……..I don’t know that a baby would be able to thrive in my world……….I think it would always feel that it was living in the shadows……..I guess its just best for me to give the two that I have…….all that I have……….anything left over should go to the other children out there who could benefit from whatever I have to offer………

Our fundraisers are about to take off………We have the honor or doing a benefit with the famed Keith Henderson and Illusions of the King…….Check out his website at www.keithillusions.com …….He will be appearing at the Paul A. Johnston Auditorium at Johnston Community College in Smithfield…April 16th at 7:30…..Diane Bailey and Sweet Dreams Again will also be appearing……Diane is an amazing Patsy Cline impersonator…….Tickets are $15 each and can be purchased at various locations in Johnston County………I need everyone of you to be there……….Proceeds from the event will go directly to our families……..Many people will be assisted from this benefit………Contact us at info@mefinefoundation.org or by calling 919-278-8673………..Tickets should go on sale next week……..seats are limited…….Also, our golf tournament is April 8th……Contact Wendy.Philyaw.b@bayer.com for more information or to participate………Our auction is being scheduled for September 17…….Should you have items for the auction…….let me know………..everything helps……The Hope House is getting there….We are off to a slow start but the organizers are hard at work……..Unfortunately, building a house is hard and time consuming…….no matter the cause……..I am still amazed that this group of people is willing to do something this grand………with so much effort involved………..I can’t tell you how amazing it all is…………Its just incredible……indescribable………..

I only have 5 more presentations scheduled……….Tuesday is the next one……Holland’s has invited me to one of their meetings……The whole church family really pulled us through Christmas………What an amazing bunch……I also have a presentation scheduled for the congregation at Friendship Baptist Church near McGees Crossroads……..Its March 14th at 7:30…….Contact Peggy at JohnOLangdon@bellsouth.net for more information…..I would love to see you there……..Its my last church presentation before the kids get out of school……..I think my time will be spent on my kids this summer……We all missed so much the last two summers…….I don’t want to miss one second of their time out of school….I want to watch them roller skate and swim…….I want to see them build sand castles and run barefoot in the green grass……….I will take my computer with me everywhere I go……..I will be at the Foundation as usual every week…….but I am going to take a little time off from the speeches………Believe it or not…..it takes a lot out of me to relive that whole thing week after week…….You would think that after telling this story so many times, that I would be used to it by now……but each time is harder………I put everything I have into it……..I tell it as accurately and completely as I can……….I get to certain parts in my story and I think I can actually smell the hospital…….hear the clicks and beeps of the pole……..I barely get through it without falling apart…….and I always cry……….When I get home, I sit in front of the computer and cry and cry and cry……….The foundation is very, very important to me………It is the only thing that gives me peace and purpose………but the presentations are hard…..although necessary…….There are so many good people in this world…..I think when people become aware of the journeys, they are willing to help……they don’t walk away…….That’s the only reason I continue to do them……..but I think I will limit them for a while……..I am still not that good at it…..I can see that those present listen to my heart and not my words…….for that, I am thankful…………I will try to keep everyone more updated than I have in the past few weeks…….Having a staff at the Foundation has helped so much…….I never thought that it would get this strong so fast………and everything you are doing is really helping as well…….Thank you for your donations, for loaning us your resources, sharing your contacts and mostly for your prayers……….One day, you will see the foundation as the primary resource for the families of children with long-term illnesses…….You will know that you helped in whatever way to get us to that point……..So many will benefit from our combined efforts………Thank you all soooo much…….Your generosity will never be forgotten………..

Take care…………………L.

Tuesday, February 8, 2005 10:13 PM CST

Just a quick update on the family in Greensboro…….

I have talked with some of the people at UNC and the mother of the family we are working on…She has been described as a true “mother of the year”……..She is taking care of the kids with lots of love and support……..She is trying hard to keep it together….She just needs a little help……The mom says she sends her gratitude for those of you who are working with us…….I have considered extreme makeover, but I have been told that this is more emergent……Extreme Makeover might take months…We really need to act now……This mom has been doing this on her own for quite some time…..and to make matters worse, the child is being admitted into the hospital in the next few weeks……..

Here’s the plan….

Laney and I are going to visit her next week…Hopefully, I have someone local to her area that is going to meet me there and help me assess the repairs…..I think we are talking about some plumbing issues, new carpet, a little paint and tile replacement…….Not so bad……

We only need around $5,000 to get the debt under control……..and get her out from under the bankruptcy……Some of her utilities bills and other living expenses have already been forwarded to my office……We can handle those with no problem…….They seem to be about 3 months behind…….Food is being collected and one of our volunteers has secured a freezer…..We have a few sources that have offered to help us fill it with food for now…….A few others from the Greensboro community have offered various items for the long term…….This is not something that I want to “quick fix” and then move on…..I hope we can assist her for some time to come……..Laney has collected several furniture items from the Hickory/Lenoir area……We still need a few more beds and sheets, blankets, pillows, etc……….She has even pulled together some bikes along with a few other kid friendly donations…….

Guys, we can really make a difference here……..We still operate the foundation solely on faith……We can change this woman’s situation with hardly any effort if everyone just does one little thing on her behalf………

I want to have everything finalized by Sunday night so that I can schedule our visit next week and report to her what is on the way……..Look around and see what you can do to help………She is making a huge difference for 11 children……certainly, we can do a little in return……She is not going to give up and neither are we……..

I have so many other things to report and a few thoughts that have been heavy on my mind…..I have a presentation at Wooten’s Chapel tomorrow night and then I will be back to business……….I will get my thoughts together and write more then…….In the meantime, please keep in touch…..I hear I have a couple of new families coming in soon…….You know I will be calling and emailing you when I get the needs together…….Thank you so much for helping us out……..This foundation is only as strong as the people supporting it……and everyone has their place……….Love, L.

Thursday, February 3, 2005 8:46 PM CST

Hello Everyone.......Just a quick update:

"Elvis" and "Patsy Cline" will be appearing at the Johnston Community College Auditorium on April 16........We could not get our schedules to work out for the July show.....

I will be speaking at Wooten's Chapel just outside of Clayton on February 9th at 7:30 pm in the fellowship hall.......Contact Lavern at lavern.carter@rbc.com for more information.....

I just received information on a UNC family who is residing in Greensboro........A lot needs to be done here guys.......Anyone interested in helping us get some of this taken care of.......Please let me know......

************

She has 3 children of her own......26, 19 and almost 16.....
They work and are trying to get an education......

Her brother died and she acquired his child....The other children are also her nieces and nephews, but their parents are "strung out on drugs or on the streets"..........Most of the children have been living with her since their birth.

There are 8 children living in the home as well as 3 of her own:

7 month old boy......size 12-18 mos
2 year old boy........size 4T
4 year old girl........size 4T
6 year old girl........size 7 slim
10 year old girl.......size 12
12 year old boy......size 12
15 year old girl.......size 3
17 year old girl.......size 3

26 year old boy........?
19 year old boy........?
16 year old girl......size 3

I asked her what her most immediate needs were.....She said food.........She has filed for chapter 13 and really doesn't seem to understand what all that means but does know her house payment has gone up.......She says she can't do that very long......Her option is public housing......and you know what that will ultimately do to the children's future......She has some plumbing problems resulting in enormous water bills....She says she wants to keep her house but it does need repairs......3 bedrooms, 1 1/2 baths.........She has no beds.......

The 12 year old was diagnosed with neuroblastoma.......He was in remission for five years and has recently relapsed.......His prognosis is not good...(This is how the foundation became involved)........She doesn't work in order to care for the 12 year old and the children who are not school aged......She is living off of the 12 year old's funds....assumably Social Security/Disability type funds.......I don't know......UNC has tried to help her with her house payments but the mortgage company (?) will not accept a second party payment......I don't know why a money order or similar method of payment could not be used.......I am forwarding this to our accounting department for advice on those matters.......

Our goals:

Get ample supply of food for family
Get household expenses current, i. e., electric bill, house payment, water bill, etc.....
Get new, warm clothes and other personal needs met
Help her get her license and a dependable method of transportation...(She is having to beg for rides to treatment at Chapel Hill)
Find a team that will repair her home
Find companies that will help the family get suitable bedding and other needed furniture and appliances
Help her get away from the whole bankruptcy ordeal and back on track so that she can handle all her affairs independently

We will obviously need some help..........If anything on this list calls out to you.........Email me!!!! Anyone know Oprah or Ty????

We have another job to fill at the foundation....We need someone who can pick up and deliver items for the lending closet......The trip will consist of transporting items to and from the foundation for the families in Durham......(no more than once each week.....the time is flexible...depending on the families' schedules)......

Take care......Maybe my next update will consist of more accomplishments than needs......L.

Sunday, January 30, 2005 9:17 PM CST

****Everyone is asking about Folden III:
I have posted most everything...and I want to thank you from the bottom of my very heart for your continued concern for my family......Just to update for the ones of you who missed it: Folden is doing well.......He was treated for pnuemonia...The spot on his lung seemed to be a residual condition related to a terrible "cold" he had when the baby died.....He is scheduled for a follow-up x-ray...but the docs seem confident that he is okay there........The spot on his testicle has turned out to be a cyst.......He had an ultrasound last Friday.........The doctors seem to think it is related to an old injury or his vastectomy........They will re-evaluate in 6 mos.......Folden and the doctors seem okay with it for now.....I like definitive answers.....I find no comfort in statistics and medical confidence...........I continue to believe faithfully that everything will be fine.........
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hello again……..Thanks so much for continuing to check on us……….it’s a busy time around here……..The foundation is keeping me busy….along with my friends, family, people I don’t know and so on……Thank you all so much for believing in the kids enough to help us continue our mission………We have so much scheduled…….I have actually had to buy a calendar and keep it with me all the time…….I think I am up to about 10 speaking engagements from now until April…….Many weekends are booked with back to back functions…as well as many week nights…….It still amazes me that so many people are interested in hearing my story……….it’s a blessing!

The lending closet is filling up…….Laney thinks we are going to have to rent a storage unit very soon……Keep sending your stuff………We are STILL working on getting it inventoried and cataloged….Hopefully, in the near future, we will have an ordering system similar to the Sears catalog…….Families will be able to pick what they need from our inventory and we can deliver it to them…….at no charge……..Can you imagine how much that will help…..Even families who are leaving 5200 are leaving behind their stuff for us………That makes me feel so good…….It helps me to know that what we are doing is worthwhile………It will make a difference……….

Folden and I went to Duke Friday night to deliver a whole birthday party to a new family going into 5200.…….This mom has 2 four year olds…….One has a rare blood disorder; it doesn’t even have a name……the twin has endured heart surgeries since birth……There are 3 other children at home…….She is staying at the Ronald McDonald house with one of the children……The others are at home with dad………Can you imagine………???????? She seems like a tough lady…….It was an honor to meet her……..She has that same look that I grew so accustomed to while living on 5200.……That wild eyed sense of uncertainty……We all have it when being admitted for transplant………Please remember this family in your prayers……..Pray for strength: for the child to endure the road ahead……for the parents to keep it together through the whole process and for the siblings……it will be hard for them as well……….much harder than you would imagine………

Folden and I helped her get a few of her things up to the unit……..Folden was hesitant……He hasn’t been back up there since September 1.………I was a little worried about him but he did okay…….The smells are what get me……..They leave with me and seem to smother me for hours………2 more children were lost this week……..Kyle, who many of you have been keeping up with………and Paris…….both were wonderful kids……..Mary Ellen, Kyle’s mother, called me to make sure her donations to the lending closet could be picked up……..See what I’m talking about…..After being on 5200.….even through such heartache…….the families don’t want to leave without helping someone else……..Its gotta tell you that that place up there is hell………..and everyone holds each other up…….Please also keep Kyle’s family and Paris’ family in your prayers…….I have to believe that those two boys are happier and healthier now than they have ever been or ever would have been……..but their families will miss them from now until eternity………

Folden and I were both a little solemn on the drive home…….I have found myself having to swallow really hard a few times since Friday……..just to keep from absolutely losing my mind………I looked in “Folden’s room”…….5206.……..There was a child in there…….sitting in the same bed……a family watching over the child……..just as we watched over Folden…..So much hope………so afraid………..It still takes my breath when I think about what he had to suffer through……..and what we had to watch………helpless to change it………

We are getting in two new families tomorrow…..They are from UNC and I understand that both are fairly desperate situations…….If you think you can help……please do!!! We have done so much lately………It seems like a new wave of families have come in and many are already struggling with the effects of having a sick child for so long………The journeys do not start at Duke…….most have been enduring hospitals, lost time at work, financial crunches and so on for at least a year before they ever get to 5200.……….Our funds are getting so low……….I am operating on pure faith right now……….I know everything that we need will come through………I just know it……..You have all been so generous through this…….and I will probably never stop asking for your help……..Its just that important………Anita, along with the generosity of RBC Centura Bank-Clayton, is working on automatic drafts……..You can pledge an amount monthly and it will automatically be drafted from your account….very convenient……very helpful……..We don’t care if its $1.………Just do what you feel you can…….(919) 278-8673.……..

As for those of you who helped us during Christmas……No, I haven’t forgotten you….We have been working on acknowledgements and thank yous for some time now……we’re almost finished………Anita is up to about 25-30 hours per week………I feel like I have been putting in about 60.…..I love it………….I really do…….Even on the days that I get down and wonder what’s the point……or where is our next dollar coming from………or I just want to go crawl in my bed and die……….The foundation picks me back up and puts me in my place………..then, something great happens…….something wonderful is accomplished…….a difference is made………and all of a sudden……..I’m good to go for a while……….

We do have several fundraisers scheduled……..Most of these are tentative dates……..so keep checking in for firm dates and times………

The Hope House is going into the permit stages…Finally!!! Anyone wanting to help us get building supplies……Let me know………

A golf tournament is scheduled for April 8th……..

1st Annual ME FINE FOUNDATION Four Person Superball Golf Tournament

“Come Swing for the Kids”

When: Friday, April 8th, 2005
Where: Reedy Creek Golf Course, Smithfield, NC (call for directions 934-7502)
Time: 8:00 am / 1:00pm **Pending if we have two tourneys on same day!
Cost: $60.00 per person (240.00 per team) - includes 18 holes of golf with cart and dinner.
Deadline: March 31, 2005

*Hole sponsors needed...$200.00 per hole Gold Sponsor (mail with entry check)
$100.00 per hole Silver Sponsor
$ 50.00 per hole Bronze Sponsor

Prizes: 1st place $400 ($100 gift certificate per player)
2nd place $200 ($50 gift certificate per player)
3rd place $100 ($25 gift certificate per player)
**Two long drive prizes / ** Four closest to pin winners / ** Numerous raffle drawings

SILENT AUCTION: Coach K Basketball, NCSU Team Basketball, UNC Basketball and many more items!

Red Tees - $5.00 each (1 per player per team)
Mulligans - $5.00 each (2 per player per team)- may use anywhere!!

Beverage cart will be available on the course!

ENTRY FORM
Captain’s Name___________________________________Phone_________________
Address_______________________________________________________________

Team Member____________________________________Phone_________________

Team Member____________________________________Phone_________________

Team Member____________________________________Phone_________________

**First 32 paid teams will be accepted!! We are shooting for two tournaments on same day!

Make check payable to Reedy Creek Golf Course and mail along with entry form to:
Wendy Philyaw
10971 NC Hwy 222 West
Middlesex, NC 27557

NOTE: For Hole Sponsors, please make a separate check payable to Me Fine Foundation & Memo: Golf Tourney

For more information contact: Wendy Philyaw 919-255-2062 or 919-284-5548 / Billy Whitley 919-965-8855
Stevie Edwards 919-934-7502

Please contact Wendy Philyaw if you are interested in Helping in some way!

Keith Henderson…….a very gifted Elvis illusionist, along with Diane Bailey, a Patsy Cline impersonator, are being scheduled for July 30 at the Clayton Center.……We are still ironing out the confirmations………Tickets will be available soon…….

An auction is being organized by a group that has been following Folden’s story for a while…..They actually contacted me……That is so incredible………The date for that is September 17, in Garner……..If you have a few great items for auction or contacts with personalities and celebrities……Pass it on…….We really need this to be a success……….

We still have a festival in the planning stages……The organizer has done a lot already but needs some help taking it to its fullest potential….Any volunteers with experience????

Guys, we are literally banking on these projects to bring in the much needed funds…………If you can think of anything more that we can do…….if you can think of things we need to do differently………in fact, anything you think of…….please pass it on………There are a lot of people out there who need us……it will take all of us to accomplish what we are supposed to accomplish….me, you, Laney, Anita, your mama, your sister, your neighbor……….So many organizations have been successful…….many started in a shoebox……….We started with a bang……and we have to keep the momentum going…….for Kyle, Paris, Folden, Ryan and the hundreds of others who have left us………..and for the hundreds more who will need us in the future………..

Take care………..and as always, thanks for listening……..Love, L.

****This was all copied and pasted from another program.......Please overlook the appearance!!!

Thursday, January 20, 2005 9:52 PM CST

Hello Everyone…….Is it springtime yet? Isn’t this weather crazy? I went to Duke yesterday to meet with a family and pick up some things for the lending closet…I was only there about an hour…..I left at 12:45.…..as soon as I hit 40, I never once got over 5 mph………There were points that I sat still in traffic for well over 45 minutes……..It was madness…….People were getting out of their cars and walking around……My kids were still at school and my cell phone wasn’t working because of the call volume…..Finally, I got through to Folden and he let Laney know to pick up the kids…….Whew!!! I continued in the nightmarish traffic and ended up at home….well over 6 hours later…………Normally, things like that would have sent me into a mental tailspin…..However, I had just spoken to a mom who said to me….”We have nothing”……..and another mother who was holding her tiny, 5 month old baby who had been in the hospital for his entire life………….A little traffic was nothing…..I just turned the radio up and enjoyed the peace and quiet……..Its all perspective!

I guess I think too much……but I am always trying to answer the whys that haunt me….Last Tuesday, Folden and I were watching our favorite tv program….NYPD BLUE….In this episode, one of the detective’s cousins was involved with a serious drug dealer…The detective found out that the boyfriend was about to be arrested on big time drug charges….She wanted to make sure that her cousin wasn’t involved in the arrest but could not tell anyone that she new about the whole operation….So…….she had her partner pick up the cousin on misdemeanor drug charges and the cousin spent the night in jail while the boyfriend was arrested on more serious charges………Now, I know all that sounds complicated but its very simple…..The cousin was spared a long jail sentence…….but at the time, she thought it was the worse thing that had ever happened to her…..She had to spend the night in jail among thugs and other low-lifes. What she didn’t know is that she had really avoided something much worse………..It brings me back to a more simple analogy…When Folden was sick…we had to hold him down to give him medicine…There was no way to explain to him that even though it seemed bad at the moment…..the medicine would ease his symptoms and make him feel better in the long run……..So that brings me to my point………God took my son……and although I know it’s the worse thing that I will ever endure…….somewhere down the road, the whole plan will be revealed……I am sure Folden is sitting up there in heaven wishing that he could tell me that everything is going to be alright…….I just need to follow the path that I am on and accomplish whatever it is that I am supposed to accomplish……When I get to heaven, maybe I will see what would have happened had God put me on another path……Maybe someone would had suffered more had I not been here…..maybe I would have ended up a bitter, selfish person had Folden not been my son……..I don’t know the plan, but I guess someone up there does………I wonder if Folden sits up there and wishes that he could tell me not to cry…..it will all make sense later…..this life is just a blip in eternity and we are all put here to accomplish something…….maybe that’s it…..or maybe I just think too much……..

Please continue to pray for Kyle……I saw Mary-Ellen yesterday……She is so strong and fighting for Kyle with everything that she has……what blew me away was to find out that she has been doing some emailing during her quiet time…..trying to find celebrity items for our auction…….Wow…..to have so much going on within her own family and to take time to think of ways to help the other families through our foundation…..That’s incredible……..

I also talked with Kim…Ryan’s mom…Since Ryan’s death, she has established the “Happy Trails Foundation” in his memory…….Please check out Ryan’s website…… www.caringbridge.org/va/ryansmedley……….Kim has a lot of great ideas and she was kind enough to share them with us……We have vowed to work together as much as possible…….after all, we are all working toward the same goal……….Those kids and families need every hand available………Kim has actually invited me to speak at one of their events in Virginia….Of course, I am honored and will try to find words to do the event justice……

The foundation is getting better and better everyday…….We are working on a lot of new stuff …….Laney has taken over the Lending Closet and has made a huge dent in the whole process……..So many people have been very generous in donating items to get us started………It is just amazing……….If you have new or gently used items for the lending closet…please contact us……..either email me at loriklee@aol.com or go directly to the foundation at mefinefoundation@aol.com …..

We have a pretty solid system in place….Anita, who has taken over most of the administrative duties, has been working hard to get us organized and ready for bigger things…..We are in need of volunteers for several jobs……..None of the jobs will require a huge amount of time….just a little consistency and effort……..We need volunteers to help us with the following…

Foundation portfolios……..Organize, assemble and mail portfolios as requested…….

Wristband sales…….Distribute, monitor and collect funds……..Wristbands are in containers ready for placement in stores, businesses or other organizations….

Tshirt distribution…….Fill orders, mail and inventory tshirts………

Public relations…someone willing to share our information with businesses and individuals and ask for support through monetary donations or donated item and services…..

Smiling for the kids project…….person needed to head the entire project……Create information to distribute to dentists nationwide…….requesting participation in the project………

Inventory………person needed to count and sort toys and items as they come in….We have a great inventory system going…….we need volunteers to help us get the inventory in stock and ready for distribution…….Some typing involved……….

Other volunteers are needed for various jobs……….Miscellaneous tasks that keep the foundation running smoothly……..jobs vary from week to week……

Each of these jobs can be completed within an hour or two each week…..Email me and let me know if you’re interested……….There is no monetary reward for your efforts…..only a sense of fulfillment…..knowing you made a difference today………

I have been invited to speak at about 8 or 10 different functions between now and April…….I have a couple more to confirm and then I will post them all…..I would love to meet you in person if you would like to attend……

Otherwise….everything here is going great……..I miss Folden every minute of everyday……..no, it doesn’t get easier……..but I am trying to make the most of everyday…..I find that I grow a little everyday……I learn more about life and I just simply try harder to be a better person………..Take care and be careful in all this ice………Love, L.

Saturday, January 8, 2005 10:58 PM CST

Hello Everyone………Things are going well here…It was nice to get back home and get everything back to the normal chaos…Monday, Folden and I went to Wake Med to see the doctor about the spot thing…The doctor said everything seemed okay but wanted to do an ultrasound…Folden seemed to think that he was fine…We just want definitive answers for all the little blips from his physical…I haven’t worried much about it since…but it will be nice to have the final results…

I have started back to the gym…Clayton Fitness has been so great about supporting the foundation that Laney and I chose to go there…James and Christy and the other staff members have made us feel quite at home…We go every morning and do weights and cardio…That has helped my mental state a great deal…Hopefully, it will help my butt as well…

The kids got go carts for Christmas…Those things are awesome…Each day after school, the kids get their homework done and we all head outside…We have made them a track, complete with obstacles and flags to direct them…Some nights, we have to park our cars around the track so that the kids can see their way with the headlights…It has been an incredible week…So far, only minor casualties…We got the ones with roll bars and seat harnesses…The kids love them…You know, I use to think if my house was straight then my whole world seemed to be in order…but I am beginning to rethink that…With all these kids around, if my house stayed straight…then one of two things is happening…either I am spending too much time cleaning or my kids are not enjoying themselves because they are required to keep things in order…So, I have decided that if my house is a little out of order, then my priorities must be getting in line…I can tell a big difference since I just chilled out a little…My house gets to me once in a while but my kids are enjoying my being outside with them everyday…they fight less and they just seem so much happier…I guess I’m learning life’s lessons a little everyday…

Thursday, I took Anna Gaites to get her hair trimmed…Laney made an appointment for Adam and Jackson as well…My friend Tracee did Anna Gaites’ and Adam’s in a flash…no problems…Then it was Jackson’s turn…It took Laney and me both to hold that child down so that Tracee could cut his hair…He was crying so much that he finally lost his energy and just layed in Laney’s arms and whimpered…mom…mom…mom…through all the little snubs…That really knocked the wind out of me…I remember so many times that FW and I had to physically hold Folden down while a team of nurses or techs poked him or stuck him…I think of all the moms who still have to look in their child’s face while they are being restrained…Fortunately for Jackson, Tracee had no intention of hurting him…but a lot of kids are not so lucky…and so many moms are not so lucky either…There is so much to having a sick child that most people don’t even think about…I still haven’t recovered mentally from that episode with Jackson…I know that I can’t mentally, physically or emotionally do it again…No wonder I have so many stains and scars from all that happened in the 15 months after Folden was diagnosed…It is just beginning to come to surface…all the things that he went through…I hope he understands that I was only trying to make him better…My heart breaks for all the parents who are experiencing those horrible moments now….

The foundation is going well…I worked everyday last week and got so much done…Laney helped me on Friday and she was able to get all the stuff that has come in for the lending closet labeled and documented…We now have an inventory list and it should be entered into the computer before next week is over…I think that is going to be a great addition to what we are able to provide…Thanks to Jane Schroeder with Duke Family Support for passing the idea on to us…Should any of you have new or gently used items that the families can use while outpatient, please pass it on to us…We will make these items available to the Duke and UNC families…

I want to give you guys a little brag report…Not bragging on me but on all the contributors and what you were able to accomplish during the holidays…

We provided Christmas gifts for 5 families…Thanks to many, many businesses and individuals…I will post the names in another report….
We provided financial assistance for 6 families…
We were able to catch up a power bill for one family…
One of our volunteers, (Aunt Marcell), organized a team to provide Christmas lunch for 5200...
We provided two boxes of non-perishables to 5200...Thanks Flavia and your boy scout troop…
One of our 5200 kids got the computer that she had asked for from Santa…Bonnie and Jimmy Hooks were kind enough to make sure this child had means for communicating with her friends, continuing her school work and finding activities to fill the down time…
Several gift cards, phone cards and gas cards were distributed to the families…
Our funds were completely replenished over a two week period…We do not have a lot of funds but we are still in operation…I compare the foundation checking account to the story in the Bible about the bread and the fishes…No matter how many people we assist, the money somehow gets put back for the next families….Just one miracle after another…

I want to post a complete report on all the contributors but I want to make sure I have it as complete as possible…I am always afraid that I will leave someone out…Nothing goes unnoticed…I watch every dollar and item come in and I watch every dollar and item go out…I know who does what and you can not imagine my gratitude…There are no words….there just aren’t…On behalf of the families and the foundation, thank you so much…

I guess you can tell from my last entry that down time is not good for me…The foundation and my family are really what fuels me…they both keep me sane…I have been feeling like I was treading through mud, waist deep…being back home and seeing how much the foundation has grown already…and watching Laney’s and my kids laughing and just being kids…man, that is priceless…I am in a much better place now…I still cry a little everyday…mostly for Folden IV…I miss him so much…but a few of the tears are for the other families…the ones who are newly diagnosed…I know how scared and unsure they are…the ones who have been facing this ordeal for much too long…they just want to go home and be normal kids again…and the ones, like my little buddy Ryan’s family…I know the heartbreak…the sense of failure…the feeling of loss…emptiness…Please say a prayer for all of these families…there are way too many of them…Pray for their peace, their health and enough strength to complete another day…Pray for the foundation…So much can be done…I thank all of you who have helped us so far and all of you who are planning on helping…every little thing helps…

Take care my friends…I love you all…L.

Tuesday, December 28, 2004 11:59 PM CST

I guess I knew this high could only last for a short time……I haven’t cried nearly as much as you would think……with it being Christmas…….and Folden’s 3rd birthday……..Maybe its because I have kept myself so busy with shopping and working with the foundation……cleaning, cooking, wrapping presents, running errands, and on and on……………….Until today, it has seemed that I haven’t had time to catch my breath………..We got to the beach around dinner time on Christmas night…..Everyone was tired but so, so happy………Christmas was wonderful……We’ve been partying for over a week……..All of my cousins came over for our annual family cookout……Its usually at my aunt’s house…….but this year, we decided it was time to hand it down to the next generation……My aunts have worked hard for many, many years to give my cousins and I Christmases to remember…….Now, we want to do the same for our own kids……..plus, our aunts can see how much they have taught us over the years……..That was really fun……..kids running around everywhere….the guys outside around a fire……the ladies inside talking and laughing while getting everything ready……..Santa even visited………The kids were so excited……..We all passed out presents and everyone seemed to have a great time…….The next day, my mom’s family came over for their family dinner………it’s a much smaller crowd but equally as nice………A couple of the nurses visited in the afternoon…….Its always good to see them………always……………………..Christmas Eve, Folden, the girls and I…….David, Laney and the boys………FW and Rose, a few other of my family members and friends came over for our traditional Christmas Eve dinner……..Shrimp, Oysters, and cheeseburgers………We’ve been doing that for years…and years….I remember so many Christmases at Granny King’s house….all of us running through the house just counting the minutes until it was time to open presents…….Andre’…..one of our favorite Duke nurses…….surprised us by showing up……..That had to be one of my favorite presents…..He is such an awesome human being…….and I don’t think he even knows it……he stayed while the kids opened their presents from me an Folden….and through our gifts to each other, David and Laney, the boys and my mom……My living room definitely had the feel of the holidays…….I hated to see him leave and the moment to end…..Christmas morning was kinda cool……Wilson woke up first, as usual…She went into the living room and only found two little gift bags full of candy and stocking stuffers from Santa….I said, “Wilson, is that all that Santa left for you?” She said, “its okay mommy, I got the pig I wanted last night…I didn’t really want anything else…”…Santa had decided to leave her Christmas presents in the garage…….A new go-cart and a TV for her room……….She was so happy…….Anna Gaites, Adam and Jackson were not far behind…..They all bundled up in their pjs and coats and took a spin on the go-carts…….I just sat outside and watched everyone having fun……..Mom, my aunt and I worked on Christmas lunch and then we were off to Gee Rose’s……Everyone seemed pleased with all the gifts…….We loaded up and headed to the beach……..I have to say it was all pretty nice……..but each moment of joy was punctuated with, “God, I miss Folden”……I thought back to last year……..My perfect Christmas………the last one with my precious son……..I worked hard to keep it all together……I worked very hard……Thankfully, I was able to stay very busy……..No time for a lot of painful thinking….I guess I didn’t allow myself to fall into what wasn’t there…….but that only works for a while……Saturday, Sunday and Monday….I worked hard trying to put our beach house back together…….Everything was a mess from all the remodeling……Each night, I was so tired……I just fell into bed and slept until morning……..got up and started again……Its about all done and we are able to stay here………Laney and her family are here and we have had a good time……again, punctuated with “I wish Folden was here”………For some reason, today has been hard……..I guess its because I didn’t have anything that I had to do…….We all just sort of hung out…Laney and I shopped around for a while……..As the day wore on….I felt myself falling harder and harder…….At one point tonight……I thought I just wanted to die……It is an unbearable pain…..one that I can not describe……..There are no words……………………I miss Folden so much……I miss touching him and holding him……I miss the feel of his arms around my neck…..his hands holding my face to give me a kiss……….I miss the sound of his voice and the soft hum he had while he was sleeping……..I miss everything……Sometimes, I feel like I am on a deserted island……I can see all the boats passing by…….Full of passengers who are laughing and dancing………enjoying the food prepared by the ship’s talented chef……I can see sunbathers resting lazily…….children playing games and chasing each other around the pool……….My island is bare…..all the plants and trees are brown from drought….the sand is dark and the water is mossy and murky…….I sit on my island, alone…….watching as the people pass by unaffected by my presence…..I yell out but no one hears me……I just sit there and watch…….ship after ship passes me by……..I just exist……..alone……..There are no birds singing around me…….everything is lifeless…………I guess that is grief………I don’t know……Even in my daily life….I find myself laughing or feeling somewhat happy…….but I still feel alone…….all the people around me can't seem to change that feeling…..I feel disconnected……separate…….Its like I am existing in my own world…..alone, although others’ lives are going on around me…….it doesn’t change the isolation……I wish I could just touch him…..just once more………just hear him say, “Me fine mommy!”……….Why does that have to be so impossible……..Shouldn’t that be a part of dying…..and living……..To know that they are happy on the other side………….Shouldn’t we be entitled to that sense of peace…………Its hard to love someone as much as I love Foldie Lee and know that for the rest of my life……the REST OF MY LIFE……..I can never see him again……That’s just too much for me to deal with………That’s too much for any mommy……too much for anyone who has lost someone that they love………I just pray for peace……I guess that’s why the foundation is so important to me……..If God was trying to direct my life to fulfill a purpose that was so important that he took my son….then, it must have been really, really important……….and I need to stay focused………I have to see what can be accomplished….I have to take it as high as it will go……..help as many people as need help……..make as much difference as can be made………I feel like we are off to a good start………So many people are involved……and its just snowballing………Doors keep opening……as if to say, keep going….keep going….I have definitely witnessed miracles since September 1st………I know the foundation is the right thing to do…….and I will see it to the end……….so please, please, please don’t forget about the new families coming in…….I realize the giving season is coming to a close…..but it doesn’t have to be that way……….This is the time when we are needed the most……January through November……..If you can’t donate, then look through your home……Do you have anything to give to the lending closet………Can you organize a fundraising project……….Can you walk into a place where you do business and ask for a donation, a gift card……..or just leave information…maybe the right person would pick it up……….Everyone can do something………and even though we have only scratched the surface………I know we are making a difference………..Tonight, I checked on several of the kids through caring bridge….surprisingly, several made mention of the Me Fine Foundation………One of my aunts even made Christmas lunch for the families on 5200.……….On Christmas day!!! There is so much to do………find your spot and settle in……….We are all counting on each other……..The families have so much to deal with already………certainly, we can help in some way…………Thanks for all the emails…….I am up to about 65 a day……..Oddly, they helped my sad mood when I signed on and so many people had emailed me……..either wishing us well or looking for ways to help the foundation………Maybe that’s God’s way of keeping me going in the right direction……..The foundation and my family are about the only things that make me feel less isolated from the world……..less detached from life………..I guess its bedtime for me………..Anna Gaites lost another tooth tonight……..The tooth fairy has been frequenting our house fairly regularly…..between her and Adam…….I wonder if they would consider a donation to the foundation???? You guys take care……Keep checking in on the new website……. www.mefinefoundation.org …….It is working but I have to get all the text done……..We will be able to take credit card orders and so on……Hopefully, the foundation will be able to shift gears in the new year……..reach a higher level……..Say a prayer for continued success……….and please keep in touch.....Love, L.

***Folden's tests went well....They had found a spot on his lung during a routine physical...He is being treated for pnuemonia......We think he had it the week that Folden IV died.......and never completely healed.....He has one more test next Monday......It is something that was found....well.....in a different area......I feel like its scar tissue from a past surgery.....Please continue to remember us in your prayers....and especially pray for good reports on Monday.....I asked Folden why he thought this was happening now....It seems that ugly "C" word keeps popping up....He says its just a reminder...God's way of saying "Don't forget!!!".....

Wednesday, December 22, 2004 9:35 PM CST

Hey Guys.......Sorry its been such a long time since the last update......It has been crazy around here........When I updated last time, I told you about the car........Well, I have to say that I was a little concerned about the cost but we got our miracle...The very next day....I received donations through the mail to cover the cost of the car and the insurance for 6 months.........I heard from some of the nurses and they said that the car was much more than a convenience for this mom.....I won't go into the whole story, but I can tell you that she had to sell everything in order to get treatment for her son and maintain a residence in Durham for the duration of transplant...........Her car was the last thing to go and the last shred of independence that she had...So we replaced a little more than transportation......Another mom was watching her son live out the end of his life.....Her husband had just lost his battle with leukemia only a couple of years earlier.....She felt hopeless and wanted to die, herself......After hearing about the foundation and its accomplishments, she made a decision to do the same thing......to help the families that would come after her........Obviously, her son was waiting for her to find her purpose....he died the next day...........

I have received so many calls and so many well wishes from people who have witnessed the impact that the foundation has had on others.......We have been blessed with so many miracles.......Doors seem to keep opening for us.......Just when I think we are running out of steam....all of a sudden....everything falls right into place.........We have assisted 4 or 5 families with Christmas gifts and money for expenses......We have also met families and delivered money to help them catch up on some of their past due bills..........a couple of the families are currently UNC patients as well as the Duke patients........Many of the tools that were stolen from one of the families were replaced......All of this was possible because people like you were willing to stand up and say, "I will help"...........God bless you guys............you have no idea how much of a difference you are making.............I am fortunate enough to get to hear the teary thank yous or see the surprise on the face of a parent when a problem has been solved unexpectedly......I get to listen to the messages on my voice mail and read the heart felt replies on my email...................It keeps me on a high..........I guess that's what keeps me going........I am more sure of this than I have ever been of anything in my life........I have finally found my purpose............to be a mom and to help provide for other families who have been down the same road that I have traveled.........

So many of you have prayed for my family thinking that the holidays will be hard......Just so you'll know......Everyday sucks when it comes to missing my son............Everyday is full of void..........The holidays don't make it harder or easier......Its just another day to miss Folden.......That is what I am faced with each day when I wake up.......I miss him when I turn on the water to take a shower, I miss him when it rains.......when I tie my shoes or watch my daughters laugh..........I miss him every minute of everyday........No exceptions........The holidays haven't made it worse so far.........I don't think it gets worse................but I do keep going.........I have good friends and a great family that help me hold it all together..........and Folden left us with a job to do.......and I intend to make him proud.........

The foundation is doing great things.....I know more needs to be done and I plan to get even more involved after the holidays........Folden, the girls, and I are going to the beach for a week........When we get back, the foundation is going to be shifting gears........I hope that all of you will remember that new families are admitted everyday.........So many families give up everything just to give their children a chance at life...............We need your help.......not only funding, but your contacts and man power............Your resources will help us to cushion the ride for many of the families who are having to endure so much.......

We will be opening our "Lending Closet" in January.........Please send us any new or gently used household items that the families can use while living in the apartments, outside of the hospital............We will loan the families what they need........when they go home.......the items will be returned to us, cleaned and available for the next family.........This is just another way we can help the families save their money to use for other necessities..........We are looking for small kitchen appliances, dishes, silverware, pots, pans, laundry baskets, ironing boards, TVs, hairdryers.........anything you have, we want it..............If we can't use it for the closet, we will find a way to use it in another area.............(Remember, my dad could work miracles with duct tape....surely, I can turn a few used items into something useful for the foundation)...........

Well......that's about it for tonight.........We've had 8 to 10 kids over the last few days........All of them have gone home and the girls are staying with GRose and Aunt Tammy..........Folden and I are home alone............its very quiet here...........almost scary quiet............We have to get up at 5 am tomorrow.......He is having some tests done..........Please say a prayer that everything is okay with him.........I am a little scared but I know everything will work out the way its supposed to.......Thank you so much for all your help......I don't have the words to say how much it means to me and the families who are actually effected by your generosity.......I pray that your holiday is filled with love and peace and a full heart..........I will check in next week..........Take care and I love you all..............L.

Monday, December 13, 2004 8:14 PM CST

Hey Guys.........I have 2 updates today......This one was written yesterday, (Sunday) on the way home from the beach....

Folden and I are on our way home from the beach. It has been a nice weekend. They are finally about finished with our beach house. Maybe we will be in it by Christmas. We worked hard all day yesterday getting things hung on the walls and put back in the cabinets. Last night, we went out to eat. That was nice….just me and Folden dressed in sweats and spending time doing nothing. He has always been my best buddy….my partner….I wouldn’t want to face this sorry old world with anyone else. Yesterday, while cleaning, I found one of the baby’s coats. We all stayed at the beach a few weeks before Folden IV went into Duke. I can remember leaving everything in place thinking we would be back in a couple of months…Obviously, that wasn’t the case. Folden III and I and the girls came back in September and cleaned everything out in preparation for the remodeling. I thought I had taken all of his stuff home….But then I ran across this little blue coat…size 2T…..It still had a little sticky stuff on the sleeves and oddly, after all these months, I could still smell him….I remember zipping it around him and sending him out to play……Its amazing that our life has changed so much since the last time he wore that coat.

Christmas time is fast approaching….Every Christmas, I think about my daddy so much….I can remember year after year, helping him put those big, colored Christmas lights on EVERYTHING…….He didn’t like it when I let them clink together…..”That will make them blow…..you gotta take care of your stuff….” And we did….we used those lights every year for as long as I can remember….Even now, when I’m putting the lights on the tree, I am careful not to let them clink together…..even though we replace our lights every year……My dad was one of a kind…..He would let me and my brother hang those lights on anything….We thought our “decorations” were so beautiful…..I am sure the neighbors were hoping we would move before the next Christmas….Daddy never took our tacky treatments down….I stand back and look at my own house…..Perfect wreathes, bows tied in just the right size…..lights hung in the proper places….It looks like a postcard….I wonder what Wilson and Anna Gaites think……They seem to love it…Folden even set them up some new deer and an outdoor tree…..They like that…..Maybe next year, I should let them decorate……Whatever they say goes……….I bet they would think it was the most beautiful Christmas, ever……

You know, I wonder what Wilson and Anna Gaites will say about me and their daddy when they are grown up….What will they remember most?……I’ll bet its not going to be my perfect wreathes…….Maybe, it’ll be the crunchy pancakes that I cook every morning before they go to school…….Maybe it’ll be all the times that Folden takes them to Chad’s in their pjs to get ice cream before bed…..It could be how I yell at them for throwing freshly ironed clothes on the floor while they are looking for something else…….I don’t know……….I just hope they say they were proud of us…..that we never turned our back on anyone…..that there were a lot of good days and a lot of good memories…..That would be a life success to me……

The foundation is still going well…..I hope to be ironing out some details this week to get started with UNC….We have primarily focused on Duke because I know how things were going there when I left…..What is needed is still very fresh….UNC seems to have changed so much…..Not many of the nurses are still there…..We should still be able to assist there very soon……..Hopefully, in a big way………..I still sit back amazed at all you guys have accomplished in such a short time……You have really made things happen and you should feel a strong sense of peace this Christmas…..I hope it will carry into the new year…..I send to you all my deepest, most heart felt gratitude…..This has been a crazy ride but knowing we are all in it together makes it go much more smoothly…….

Please check into the Wish I May, Wish I Might Foundation………The founders of this organization are some of my cyber friends from Delaware…..they are getting together a cookbook and the proceeds benefit their local hospital and the Me Fine Foundation….also, they are making blankets….you can have one made in someone’s honor or memory for $15.…………….I don’t think its too late to place your order…………..I think the address is www.wishimaywishimight.org …..I will have to check on that when I get online….but I know I’m close……..

Again, thank you all for what you are doing to get this foundation solid…….so much is going on around us….its incredible…………I mean, like it’s a miracle, incredible………I am headed to Duke tomorrow……..I want to visit a few of the families and deliver a few things that you have already sent in………I will probably make one more trip before Christmas…………..so if you have any last minute contributions, I will gladly distribute them for you…………………..Please check on Ryan…… www.caringbridge.org/va/ryansmedley ……..I haven’t read his site today but I know his family is facing some pretty touch stuff……………You can’t change his journey good or bad……….but you can offer your prayers and support…believe me, it does matter…………Take care………….Love, L.

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Just another update to report on our visit to Duke today......Ampa, Jim and I went to 5200 this morning to deliver a powerwheels tractor to one of the kids........We didn't stick around to see his reaction.......I am sure he loved it....thanks Dena and friends for getting it all together so quickly........Also, we passed out a few of the phone cards, Walmart and Target cards, and gas cards that you guys have generously sent in.....employees at Western Union, BP and Sprint have been just a few of the contributors.......

Today was harder than it has been in a while to visit the floor......Sadly, some of the children that were doing so well when we left are back on the floor and in PICU........I saw a couple of mothers who were so extremely supportive during my journey...and now they are facing their own life changing twists and bumps........I walked over to the clinic to see my friend Marcella....Deondra still seems to be doing well.....I was also blessed to see Elijah and his precious family........Elijah also had AML and is recovering nicely......I walked by the rooms and saw so many hairless children.....some crying....others asking to leave the hospital.........I just had to get out of there.........I had a chance to speak with Jane.....She is part of the family support team.......and she was a wonderful friend to us while we were at Duke....What an amazing person to dedicate her entire career to helping families facing 5200 and the struggles that go along with that........I told her that we were all here....raising money and using our resources to help out however we could...........It seems that just because its the almighty DUKE.....everyone thinks that everything is already taken care of for all those who enter the doors.....So not true...........Another amazing thing happened today because of your efforts........One of the families that we met while at UNC came to Duke right after us.......They have been there forever........Mom is taking care of the child and is having to transport him by bus.........Oh my God!!!!! All those germs.......colds, infections, runny noses..........I know she is scared everytime she puts him in a seat........One of the nurses has been helping him get his blood work to the lab every morning....He is going to be permitted to go home for one day during Christmas........A nurse hesitantly asked us if we could help the mother get a car so that the child wouldn't be subject to so much on the bus....I knew that was a biggy, but God and the angels that oversee the foundation have made a way for everything so far.....On the way home, Ampa and I talked about it.......He made a phone call and tah dah......Mom and son now have a car to get to and from clinic visits and maybe even a trip home to see his siblings over Christmas..........Its not a cadillac.......but it will serve its purpose........Ampa and an old friend of his took it to the hospital this afternoon.......The nurses put a bow on it and brought the mom down to see it.......it must have been an awesome sight because Ampa really seemed effected.......I know it was the right thing to do........This mother has fought so hard and not asked for a whole lot for her son.......If the nurses feel that it was a necessity, then I believe it......they would never steer us wrong...........I know that Foldie Lee was celebrating in heaven today........I know that he was proud of all of our efforts in making things like this happen...........This is no longer my foundation or a foundation supported by my family........This is all of us.........You, me, everyone.........We can and will make a huge difference in this world.......I believe it........you never know what will happen if we just keep going and keep believing...........So many people can be helped........so much can be changed.................and on behalf of everyone who has benefited from your prayers, donations and hard work..........I sincerely thank you.............You are all the glue that holds my broken heart together..........Take care and know that today....you did a good thing.............Love, L.

Sunday, December 5, 2004 8:32 AM CST

Hey Guys..........Hope everyone is doing well........We are all gearing up for Christmas around here......The kids are so excited...I have finished most of the decorations and shopping....Everything looks nice and even smells Christmasy......The kids can't stand not opening the presents yet...........I can tell little hands have been rummaging through some of them........The animals are looking good.......The chics now have big boy feathers......They are growing into chickens at an unbelievable pace..........I weaned the cows this week.......That was so hard.....Each time Jake and Rocket heard me outside, they started crying for their milk....Folden says "NO MORE BABIES"..........but they are adjusting well to eating the feed......I didn't realize it would be so hard to stop the bottles...They still kiss me each time I go out there so I guess they are not too mad at me.......I have the symposium behind me.....That one was hard for some reason........It was a more intimate group....I think it is easier for me to speak in front of hundreds than 20 or 30.......I could see each face and each one was full of emotion.......I stumbled a little in the beginning and cried more than I should have....The story never gets easier.......Marcella from 5200 even showed up to tell the audience that we are real and our work really is making a difference......I am so proud of her...Deondra just left Duke and still Marcella made arrangements to be there with me........It was so good to see her......I guess the emotion of it all just got the best of me....I will work on it and try harder next time.......We have a couple of new requests in for help with Christmas and expenses associated with out patient care........The lists are very modest so if anyone would like to help out, even if just with one family member...we would greatly appreciate it.....I realize it is short notice, but I have checked in to the stories and I actually wonder how they have made it this far.....financially..........One of the families on our list was on 5200 when we were there....I remember watching the little boy walk the halls.......He was ready to go home.....and then it seems he has relapsed....What a mess.....His dad is self employed and all of his work tools were stolen while in Durham.........If anyone has any connections at Lowes, please let me know....I want to help him replace some of his tools so that he can work some and help get his family back on their feet.........Anything helps guys.......It is hard for me to keep asking for these things but I know how important it is and how much it is needed............

Each night before I go to sleep, I pray that I will dream about Folden.......just one moment where I can see him and talk to him.........So far, I have only dreamed about him once....and I dreamed that I had left him in the hospital with no one to care for him but the hospital staff........Friday night, I said my same prayer....At some point during the night, I dreamed that Folden was standing in front of me.......He was invisible except for his clothes.....I immediately knew it was him just from the familiarness of his presence.....I grabbed him and picked him up........The part of the dream that has stayed with me is the weight of his body against mine....The void in my arms was filled.......It was an indescribable pleasure......When these kids are in transplant, they are hooked to so much that it is almost impossible to hold them.......I could lay beside him and put my arms around him, but I couldn't actually pick him up and hold him like a mother should be entitled to do....In the dream, I looked at his face....It was different....more like he was when he first went into the hospital at 17 mos..........and then he disappeared..........I woke up with my arms engulfed around something......there was nothing physically there but air, but it was as if I could almost feel his shape.......God, I miss him so much........I swear I don't know how I will live the rest of my life, whether it be 30 days or 30 years, without that child.........The void is unbearable........

Enough for now....I am going out to the barn to clean the stalls.........It has been a busy week and I haven't been able to spend as much time out there as I would like.....Please stay in touch.......all your efforts for the foundation have really payed off.........I am going to try and copy some of the testimonials that we have received from families that we have helped get on their feet.....Take care...L.

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Testimonials

Hello, Lori this is XXXXXXXX writing you and thanking you for more hope. I thank God everyday for people like you, and the love you show after you and your family have been through so much. You have got God written all over you and don't stop doing the things you are doing because God has got big plans in store for you. I told my daughter about our talk and she just broke down and she wanted to see you, but you had already left. Lori I just want my kids to be happy for Christmas………………………………....... Please call me and I really would love for you to meet my children. Lori thank you so much and God sent you to me today for some reason and only he knows why.

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Lori, this is the person you came to see the other day and I want to say thanks to you and your supporters. It has been so hard to do all this with no help and you saved my kids life and mine. We have no support and Lori it was God that sent you my way that day in the hospital. My daughter and I have really suffered this long journey, because I'm one that has a pride issue and I try to fight battles on my own. I have three kids and we are going through a trying time right now, but through God we will pull through. Lori, I hope your foundation does really well and you get the support you need, There are a lot of families out here that needs help and support and my heart goes out to them all, people just don't realize what we go through every single day and you are out trying to make a difference. May God continue to bless you and your group of supporters. And my children say thanks for getting us over this hump, well she is in surgery as we speak, so I need to get back. I just wanted to run over and write to let you know that we appreciate what you all did. Call me and let me know that you got my message.
May god bless you all,
Thank you

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Hi Lori.
I would like to say that you and your family are sent from heaven. I got the blessing from XXXXXXX. I almost fell to the floor. I got very hot in the face and couldn't stop rejoicing.
The next day the doctors told us that we could go home. I was so numb. I wanted to go home, but in the same breath I couldn't believe my ears. I waited a couple of days to begin to pack up our things. Never the less we are home and things are going great. God gets all of the glory.
I ordered his computer. It was $662.12. I took the rest of the money and got him all of the games and clothes that he asked for. Thank you for making his Christmas wish come true.
My heart is with you and your family. You all are a special group of people. Thanks so much for your love and blessing that you all have shared with us.

Saturday, November 27, 2004 10:45 PM CST

************I need you guys to get right on this one....One of our friends from 5200 just hit a bump in the road....I need everyone to say a prayer for Ryan and his entire family.....Please visit Ryan at www.caringbridge.org/va/ryansmedley ....Please sign the guestbook so that his parents will know that we are all here supporting them.....Thank you so much....L.

Hello Everyone…I hope your Thanksgiving was wonderful and filled with thoughts of appreciation and gratitude for all that you have…I hope that the families from 5200 and 5C crossed your minds…I wonder who is there right now…and how they are doing…I pray that God will grant them peace tonight…

We are at the beach…Laney and I have been Christmas shopping again…I am about finished, thank goodness…Most of our decorations are up at home and the presents are wrapped and under the tree…The girls are getting excited…They are trying so hard to be good since Santa watches more this time of the year…

This week has been emotional as I am sure you can imagine…I don’t know if its all the activity with getting Christmas stuff ready, all the plans we are making without Folden, Thanksgiving with family or just simply PMS…I just know that its all been very hard…I have been in and out of so many stores and caught myself reaching for something Folden would like and instantly remembering that he is not here to enjoy it…I am sure he is having a wonderful celebration…I guess its hard for me not to be there to see what’s going on with him…I miss him so much sometimes that its impossible to breathe….I feel like the witch on the “Wizard of Oz”…”I’m melting!!!”……My emotions get so intense and I just want to hold Folden so badly…to stroke his cheek or kiss him goodnight…I begin to feel myself falling apart and slowly becoming a puddle of nerves streaming across the floor…I try to keep myself in tack…but that is not always possible…When you love someone as much as I love Folden, his absence is more than a heart can take……

My friends from Hickory, David, Laney and the boys are staying with us for a while…That has been good….All the commotion in the house is actually soothing…They will hopefully be building next door to us…our families are very close and I enjoy them being around…Laney has been like a sister and Folden and David are friends from dental school…I think we are all good for each other…Life is short…You have to live it the best it can be lived…I guess that is one of the main reasons for their move…They love it here as much as I love them being here…Princeton and Johnston County are awesome places to call home…

The foundation is doing great…Folden and I moved our stuff into the new (rent free) headquarters last week…We are finally becoming organized and more able to handle the overwhelming support that we have received…It was just too much for me to do alone…I mean, there are so many people organizing and volunteering with projects but I have been doing a lot of tshirt stuff, coordinating and fundraising…I have been spending several hours each day just handling email…I realized it was getting to be too much when several things slipped through the cracks and didn’t get taken care of as it should have…Now, we have help and an organized system…Things should improve a little over the next couple of weeks…I am so proud of you guys for stepping up to the plate with donations and the toy drive at UNC…We have already helped 4 families and 2 of those were what I would classify as severe need…We couldn’t do it without so many caring, supportive people working to make it happen…

Tshirts and sweatshirts are in…youth small and medium……adult small, medium, large and x-large…Tshirts are $10 and sweatshirts are $15…Email me at LoriKLee@aol.com and note what you are ordering in your Re: line………also, wristbands are still available for $2 each…They are printed with “Me Fine Folden Lee IV” and are basically wide blue rubber bands……We now have buttons with the foundation logo or a picture of Folden……they are $2 as well……a small amount will be added for shipping in order to cover our postage and envelopes……Be sure to send me your mailing address along with your order…an invoice will be enclosed with the merchandise for easy payment……………We are still working on the website…when it is running, we should be able to take credit card payments………

The speech is still on at Wayne Community College……December 3 at 12 pm…………I am thrilled to have the honor of doing it but still a little worried about what to say…The students at WCC have been very supportive…we have received gift cards for the floor…they have set up a scholarship in Folden’s name…they are even donating platelets in his memory……That is soooooo awesome…I hope I can do them justice in what I have to say on Friday…We will hopefully have a booth set up with some of our information and merchandise……To get there…just follow the signs on Hwy 70 to Goldsboro and then continue following signs to the hospital exit…The college is near the hospital…or email Gene Smith at gsmith@waynecc.edu for more specific directions and a program itinerary…I would love to see you there……

Let’s see…What else is going on………Anna Gaites lost a tooth………I think one of the goats may be going to have a baby………We just found that some of our stuff was stolen while we were in the hospital…Nothing of value to anyone but me…My dad’s rings, watches and pins earned through his career………Folden’s grandfather’s high school class ring……some old love letters from Folden……cards from my parents and my brother……………Isn’t that crazy……A DOT worker found my class ring and Folden’s in a ditch in Selma…The stuff had been tucked away in a “safe place” in my closet…obviously, not safe enough……Anyway…most everything else is going well………Everyone is dealing with the loss and trying to accept it……It doesn’t get easier everyday, however…that is another misconception………We are trying to make the best of our lives…remembering what is important…and making a difference when we can……Please continue to remember all the families, past and present, from Duke and UNC………as well as the millions of other families around the world who are struggling with their own circumstances during this wonderful season………Take care, L.

Thursday, November 18, 2004 11:53 AM CST

Hey Guys...I am working on an update but felt I needed to pass this on asap!!! Let me know what you can do!!!

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Hey Lori...my name is Alyssa, I been a faithful follower of your site for quite sometime. I am writing to everyone I can to make a dream come true for two dying children. As you may remember Tommy Bennett last year died after 3 stem cell transplants (he had Sanfilippo). He has an older brother and sister who are quickly declining. Hunter is losing his ability to walk and Ciara, who is pretty much wheelchair bound is having horrible pain and is crying all day and night and is having sezuires. Sadly...she is starting the end stage of her disease. The Bennett's are coming to Orlando for an MPS conference. They desperatly want to bring the kids to Disney World. We were going to take all three kids last year, but sadly Tom Tom died. This year I am doing everything I can before it is so late for the other two kids, but after selling most of their personal things there is still not enough money to take the kids there. They have raised enough to fly to the conference and back and that is all. We don't know how much time Ciara has or if this is her last Christmas. The Bennett's do all they can to give their kids the most they in their short lives. I am begging people to please in the spirit of Christmas and the Spirit of life make this dream come true for them. They have a donation site at http://www.active.com/donations/campaign_public.cfm?key=mpsconference and there website is www.caringbridge.org/ca/bennettboys I know that thousands of people read your site and I am trying to get the word out to everyone I know as the conference is less then a month away. Thank you Lori and thank you for all that you do for the families at Duke. You are an angel to many

Alyssa

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Hey Lori!

I just received a phone call from UNC letting me know that the "money people" (whoever that is) at UNC has decided that we can not due our usual toy drive this year. The toy drive we have done previously has been to make sure that Santa comes to every child hospitalized on Christmas Eve. We are going to do what we can on the floor as far as all of the staff on 5CH, 6CH, and 7CH to donate what we can. Do you think you could ask people through the foundation to do a toy drive for us or donate funds to help purchase toys?

Just let me know when you have a second. Im going to try and send out a couple of other emails for some help as well.

Thanks!

Monday, November 15, 2004 9:48 PM CST

Hey Guys...Just a quick update...I am so overwhelmed from the outpouring of generosity from everyone....Thank you so much for helping the family that I mentioned in the last update....because of so many caring people we have received countless blessings today....I just wanted you to know what you all have accomplished....

The Hope House finally has a lot to call a home...The house we are building to benefit the foundation is going to be located right down the street from me...The owner generously donated it and we will soon be in the building stages...hopefully by early 2005....Amen!!!!!!!

I was able to deliver a significant amount of money and 3 months rent to the family I spoke about...Please continue to send in what you can...This family will need our assistance for some time to come.....Feel free to include personal notes or encouragement...I will make sure she gets them all....Me Fine Foundation, Inc....c/o Lori Lee.......610 Braswell Road......Smithfield, NC.....27577..........I wish you could have seen her face........It was priceless gratitude........We were also able to deliver $1000 to another family to help them catch up on a few things.....Another amen!!!!!!!!

We received a call from Charlotte....A group of high school kids will be selling our wristbands state wide!!!!!!!

Several churches and other groups have expressed interest in sponsoring a family for Christmas....I think we have our current families covered but one church happened to call while a friend of mine was telling me about a terrible situation in Clayton...Hopefully, this church will feel led to help this local family.......

Clayton High School's HOSA is also selling wristbands for their community service project..........

Some kids at SSS are taking on wristband sales as well!!!!!

Tshirts will be in on WEDNESDAY!!!!!

Please be patient with me....I get between 300-400 emails every week asking for information and merchandise.....I have been answering each one myself....It sometimes takes me a while to get back to you...especially when what has been asked for is not available yet.....Charlie has been working hard on our brochures and I think they look nice...We only have very few but I am promised a new shipment asap.....Info packets are being put together and I will get them out as soon as I can....

Please continue to email me at LoriKLee@aol.com....with whatever you need to get help for these families...I love your personal notes of encouragement and support....Please keep them coming......The golf tournament is going well and a silent auction is also being incorporated...If you don't have money to send...then don't worry....I have found that with the right information, the businesses that I frequent are more than happy to make a contribution...Gift certificates for the tournament....gift cards from chain restaurants that can be passed on to the families.....Walmart has been very generous......nail salons.........Anything that you can think of can be used in some way to benefit the families.....If you can't spare the money, take a moment to ask for a contribution....It all adds up....

I have just been notified of another family on the way to 5200 that will definitely need our help.....We now have several families on our list and we need to keep going....we need to get stronger....I pray that you will be led to use your personal resources to help these families in need....

More later.....Love, L.

Saturday, November 13, 2004 10:04 AM CST

Good morning…..We are all at the beach again...Not much going on this weekend so we decided to spend some time just hanging out…Ampa and I went back to the hospital on Friday…We had a few things to deliver to one of the patients and Ampa wanted to see Amanda and Brandon…He was concerned a little about how he would feel and how well he could hold up…But he was amazing…As soon as we walked on the floor, several of the nurses gathered around him offering lots of hugs…Jim was there, of course…He never lets us down…I could see in everyone’s faces, genuine happiness to see us both…We completed our mission and Ampa even stepped in to see Hunter…I was so proud of him…Although, I have always been proud of my father-in-law, I was especially proud of him on Friday…Ampa has not been handling all of this so well…he is overcome with grief on most days…but he faced the task at hand…with great dignity and strength…I know Foldie Lee had a smile on his face…We were even greeted by a few of the social workers who had walked over from the other hospital just to see us…Some of the families from other units heard we were there and came over to check on us and say hello…It was nice to see everyone but it also made me sad to see that there were so many familiar faces still in the hospital…One of the mothers who came from the other unit reported on her daughter…She was in 5200 while we were there and is now back with a few minor problems…I asked her how things were going and she smiled and said everything was going well…I told her about the foundation and if anything came up to just let us know…She was already aware of it all from reading the journals…That was a nice feeling, to know that there were still 5200 families keeping in touch…Anyway, later she asked me if I could talk with her elsewhere so we stepped out into the hallway and she began to break my heart with her words…Her daughter was already home and had recovered from transplant nicely…Suddenly, she finds her husband has left her and her 3 children…She is unable to return to her job due to the frequent hospital stays…She is losing her house and her 15 year old daughter is having to take care of her 2 year old son while maintaining her grades and sports activities…She cried and said she didn’t even have money to buy laundry detergent…Her daughter is sad because she is worried about her mother…I wondered how can a mother keep the positive attitude necessary to help the child overcome this disease while things around her are falling apart…I told her not to worry…Help was on the way…(I raised my hand on your behalf)…On the way home, Ampa and I were both on our phones trying to get some of our resources in motion to get some help for this family…This is what we need:

Immediate needs:
3 months rent at $375
Cash for gas and living expenses
Gift cards from Target, Walmart and Food Lion

This child has fought hard to recover and Christmas is right around the corner…I have already spoken with the mom again and I am trying to find a couple of church groups or individuals to sponsor this family for Christmas…Their wants are very minimal but I feel like this should be the best Christmas ever, taking into consideration all that the family has been through this year…not only the medical problems but the personal, family changes as well…
I am not going to play some sad song or toy with your emotions to try and get you to help…I hope you can see that this is not some mom just sitting around waiting for a hand out…She is fighting as hard as she can to make it without losing her dignity…She just needs a little help until she can get back on her feet…If you don’t have money to spare, I understand that completely…but you could walk into your local Walmart, Target, or Food Lion and simply ask them for a gift card for this family…I can send you any information on the foundation and it's non profit status…The foundation is very young, however we can handle a lot of this…I have emailed a youth group at a local church who is interested in helping a Duke family…Tell me what you can do…and just know that she will not be the last family that I encounter who needs assistance…this is what makes the foundation worthy of your support…all the money goes DIRECTLY to the families…I happened to have a gift card in my pocket that I picked up while shopping for the girls at Walmart…I don’t know what made me stick it in my pocket but I handed it to her and I said don’t worry anymore…This should help out a little today and I will be back next week…Things should get a little better after that…I am counting on you guys out there…I know so many of you came through for me and now it is this mother’s turn…One day, she will return the favor…and help another person…

Hunter’s status has not changed and Amanda and Brandon are getting by…I hope you will continue to pray for their entire family…Hunter’s site is www.caringbridge.org/nc/hunter.jones99 …Amanda hasn’t updated in a while but maybe you could offer your prayers and support in the guest book…

Take care my friends…I sincerely appreciate everything you do……This foundation would be nothing but a thought without your support…Thanks from all of us!!!! Love, L.

*******Nov. 14....Just to let you know that Hunter died yesterday afternoon......Please remember his family as they face a new journey without this precious child....L.

Thursday, November 11, 2004 7:23 AM CST

Good morning everyone.....I have finally figured out how to save my entries when caringbridge is not responding....Usually, I spend an hour or so updating and then caringbridge will not accept it and the whole thing is lost...Now, I have learned how to save it and resubmit it at another time.....I am such a computer ding bat....You have to see the humor in this journey of mine....I am terrible with the computer but yet Folden's page has had well over 200,000 hits....I am usually behind the scenes and not the social butterfly that some of you are and here I am speaking in front of hundreds of people, telling them my story.....I would rather swallow broken glass than to have to ask anyone to buy or donate to something....fundraising has always been hard for me, yet I am going out and almost begging everyone to support the foundation.....I guess God doesn't always use our strengths for His purpose.....Still, I find it a little comical.....

Last night, I got a call from one of our favorite nurses....She had heard that Ampa and I were going to the hospital on Friday and wanted me to be prepared...She didn't want me to walk in and find that Hunter was not doing well....I immediately headed to Durham because I thought Amanda, Hunter's mom, might need a friend.....I think their family has been very supportive but a voice of experience is sometimes a help.....I made it to the hospital by about 8:30 PM and parked my car...I asked myself if I was ready for this...It was my first time back since September 1.......I got on the elevator and heard a familiar voice directing me to the tunnel....As I walked down that long tunnel, I remembered all the days and nights that I made that same trip....The elevator took me up to the 5th floor and I went into the clean room to get ready to go on the unit...The smells of the disinfectant and the alcohol were suffocating.....I walked on the unit and it all came flooding back to me....I saw the nurses busying themselves with medicines and charts....Dr. Martin was talking with a family out in the hall....I saw Mikey's room...He is one of the kids with AML that was leaving when we did our preadmission tour....He is from FL and was doing great....then something happened and he is back on 5200 nearly in a vegetative state....Next to him was Joshua....A tiny, tiny baby who was there during our stay and is now back...I am not sure of the specifics.....I hugged the nurses that I knew and walked down to Hunter's room.....I talked with Amanda and Brandon and decided to peek in on Hunter....Then it hit me......Hunter was a vibrant, animated 5 year old who loved construction equipment and camouflage.....He would walk by our door everyday and wave at Folden....He always wanted to know how he was doing.....Now, as I looked at him...I didn't see that child anymore....He is swollen almost beyond recognition...His mouth is covered with an oxygen mask....His eyes were heavy and it took a lot of effort for him to speak to me....His grandmother asked him if he remembered me....I told him I was Folden's mother and he shook his head....He said, "the toy lady"......He had remembered some things that I had taken him when he first went in....I stepped out and waited for Amanda to join me...As I stood there, I thanked God that Folden wasn't suffering....that He had relieved him of that struggle....My heart ached for Hunter as he sat in that bed....I was sad for all the things that he couldn't do and would never do.....I was sad for his family as they were forced to witness all the suffering.....It just isn't fair......The tears soon came and I was overwhelmed with all that I saw around me...The familiar sounds and smells....The hope in the eyes of some of the families...the grief in others.....They all have one thing in common...They are scared...Scared of what is to come......Amanda and I walked outside and talked for a long time....She is a strong women.....She has had to endure so much in her 24 years....and knowing that her only child will be gone within 2 days is surely more than anyone can take.....She is facing it and accepting it....I know God chose the right one to be Hunter's mother....She has fought hard for him....Please say a prayer for this family......Pray for peace and pray for Hunter's comfort.......Pray that God will take extra time with them as they face the days to come.....

I left the hospital and headed home.....I felt so guilty.....I felt guilty for having the free will to get in my car and drive home....I felt guilty for being able to stop by a store and buy a drink.....I felt guilty for turning into my own driveway and walking into my own house....I felt guilty mostly for crawling into my warm bed beside my two healthy daughters and my husband.....I felt guilty for being able to leave it behind and go back to my normal life........That is something that those families are denied.....Everything in their day is programmed....Home is sometimes states away...Amanda hasn't seen her home in a hundred and something days...She probably doesn't even remember what her bed feels like...She hasn't been granted free will in weeks....and weeks.....I guess sometimes we focus too much on what we don't have....We are so self absorbed that we forget all the things that we have that money can't buy.....all the things that we take for granted yet another person would give anything to have just for a moment.....There are times when this foundation gets a little overwhelming and things aren't coming in the way I need them to.....Sometimes I wonder if it will ever accomplish anything significant.....Walking through 5200 last night just renewed my conviction...It has to succeed....It has to thrive.....It will make a difference...Sure, I can't change the outcome of the journeys that the kids and their families are forced to endure.....but through the foundation and all the support that is coming in from this area and around the country, we will cushion the ride.....Take care...L.

Sunday, November 7, 2004 8:24 AM CST

Hello Everyone….I have just spent 2 hours updating and it was lost….That is very unnerving……Makes me want to scream…..I’m trying again….

Everything on the farm is going great….I wake up every morning to 23 hens and roosters making all sorts of noises…I don’t think everyone appreciates it as much as I do….The calves are thriving…They enjoy their new found freedom…I have let them out of the stable and they run around the pasture, kicking up their heels….Boy, do they come running when they hear me…they look forward to those bottles…Milkshake is recovering from the loss of Buttermilk…..He is beginning to eat from my hand and doesn’t freak out each time I invade his home…The goats are funny….They almost climb on me when they smell the graham crackers….My mom says that Daddy is probably sitting in heaven in disbelief as he watches me feed chickens, brush the cows, haul hay and clean out the poop…..I am sure he never expected his daughter to turn into a small time farmer…..I tell Wilson that life is a lot like what goes on the barn….Sometimes, you have to shovel poop, and other times you have them eating out of your hand….but you have to do what you can to make it a better place to be….

The foundation is rolling….My cousin Lynne and the staff at Dees, Jackson, Watson and Associates in Smithfield are working hard to get all the necessary forms filed in order to get our non-profit status….Angela Narron has taken over our “legal department” and things are finally moving along….They have worked hard…..and progress is being made….We can issue a letter of intent for any donations that come in….This letter can be filed with your return in order to get the tax benefits…..If you need more information on making donations, please let me know…I can get all the info you need….

The wristbands are finally in and my mom will be shipping them out next week to all of you who have previously placed orders….Should you like to get a few extras, we can forward those as well…We would be glad to have more of you sharing them with your friends….You can hold the invoice until all your money is collected…..We are working on buttons and the tshirts should be in any day….We have youth and adult sizes….tshirts are $10 and benefits the foundation…..The brochures will be available on Monday….anyone interested in any of these items…please let me know….Every bit helps……Hopefully, we can raise awareness by wearing some of the Me Fine items…Everyone tells me they wish they had known what these families have to go through….they would have been helping out earlier….

The symposium is scheduled for December 3...I should be speaking around noon….There will be so many people there to help answer some of your questions about cancer…..Wayne Community College is located in Goldsboro, NC….I will post directions…Everyone is invited….Please come in Folden’s memory and in honor of the other kids and their families who are battling life threatening illnesses…..A fraternity at WCC is raising money for a scholarship in Folden’s memory…They are also donating platelets monthly and are on stand by to help out with the current projects for the foundation….Isn’t that awesome…..

A few other inspiring stories….I had a couple of babysitters last weekend for an annual slumber party….When I paid the girls, they handed me back a good percentage of their money and asked me to put it into the foundation….A little boy was offered $100 by his grandfather if he kept up his good behavior in school until Christmas….He is striving to accomplish this feat so that he can give his money to the foundation…..Isn’t that amazing…….??????

We are working on getting some things together for a little boy who just made it through a kidney transplant…he is a student at Princeton and his family is beginning to feel the strain from all the expenses associated with the long hospital stay…..

Another child we are working with has one of the worst stories I have ever heard…He had it rough before he ever got to transplant….He has nothing and the foundation and a few supporters are rounding up some of his needs……He will have needs for quite sometime…..I hope we will be able to follow him after discharge….

We are still collecting money for our entrance bags…They include gas cards, gift cards, parking passes, art supplies, phone cards and other items that the families can use…..Please consider sponsoring one of these $100 bags….

We are also preparing exit supplies….The families have to continue to run meds and care for the children as if they were still in the hospital….We are gathering trashcans with lids, trash bags, antibacterial soap, medical trays and liners, gift cards and other items needed to help make the transition to outpatient a little easier…..

We are working on the Hope House….A group from Princeton is organizing volunteers to build a house in the area…We are looking for building materials, appliances, light fixtures, doors, windows, and also, plumbers, carpenters, framers, contractors, electricians and so on….Please consider doing any part of this project…it is a huge project to undertake and we need all the help we can get to make it successful…..

Another project leader has volunteered to organize a golf tournament….We need sponsors and volunteers…..

A festival is also in the works and the project leader is also looking for sponsors and volunteers…..

Should you be willing to support any of these projects, please email me….I will forward you to the appropriate committee……

I am going to sign off for now….Its very late…..Today is my birthday…and I sure miss Foldie Lee…….Folden and I are at the beach with David and Laney….Laney and I have been getting a lot of Christmas shopping done as well as getting things together for the kids from the hospital that are on our list…..Ampa and I are going to make a trip to Duke next week…I want to check on Hunter and Ian and deliver these gift bags….I don’t know how I’ll feel hearing those doors closing behind me again…..Say a prayer that our visit is productive and that we can find out what is needed by some of the other families…..Take care, L.

Monday, October 25, 2004 7:40 PM CDT

Hello Everyone....I am back...(big sigh....) Where was I? Oh yeah...Clay Aiken...We went to the fair and the Clay Aiken concert...WOW!!!! He is amazing....I was extremely impressed with his music, of course...He has an incredible voice...and his backup singers are nearly as talented as he is....It was a great show....It was an awesome performance and I was glad my girls were there to see it....He is real...No raunchy dancing or ugly words in his music...It was fun and clean...something you don't see much of these days....He has started an organization to help children just like Folden IV....I am so proud that he is from NC....I know his mom is proud....He is one of the few who didn't sell out...stayed on the high road.....Wilson wrote him a note about the foundation and attached a wristband...Anna Gaites found his mother and handed it to her...She was very gracious as I am sure she gets stuff like that all the time....Wilson and Anna Gaites felt like they had done something important...and she didn't burst their bubble....Thanks Kelly for the tickets...I am so happy you thought of us...We really did enjoy it....

Okay...The farm......We have added two new animals...We now have 2 calves...They are one week old and we have to bottle feed them....They are from State University's research program and we got them from a farm in Garner...Oh man...They are so sweet....You just have to come see them if you're ever this way...Ampa called tonight and we are getting a dozen baby chicks tomorrow...Wilson and Anna Gaites can hardly contain themselves....We did have a devastating loss...Buttermilk, one of the pigs, died last night....We think she had a heart attack or something...She has always had labored breathing and I guess the excitement of new animals and a few changes was just more than she could take....Wilson and Anna Gaites were overwhelmed once again....Its hard to explain to them why God keeps taking away the things that they love....But I think we have it under control....

The retreat....I haven't had a lot of feed back other than what you have read in the guestbook....but I think it went well...I said everything that I could say in 20 minutes, I never fell on my face or fainted....I could see that the congregation was listening and I felt guided the entire time....I know I was not speaking alone....My mom said she was very proud and sad that Daddy wasn't there to hear me....That was enough for me.....GeeRose was pleased....I tried to represent my son and my family as best I could while encouraging the listeners to cherish what they have and make a difference whenever possible....I would do it again in a minute so I guess I could say I feel successful....

The foundation is still rocking and rolling....The wristbands and the tshirts are not in yet...If you have ordered either, please do not give up on us....They will be in soon and shipped promptly.....I can't thank you all enough for supporting this effort....I have started getting some requests from the hospitals and some of them make me so sad....I can't believe what children have to endure in their lives on top of transplant....It breaks my heart.....and makes me want to succeed with the foundation even more.....Thank you, thank you, thank you to all of you who are sharing your time, effort and money with these families....We still need volunteers for several projects...all of them are not immediate and can be worked around anything...Every hand makes a difference....

Sameeya, Andre and Cheryl came to visit over the weekend...They are a few of Folden's nurses and I am sure you remember me writing about them before....They went with us to Wilson's game and then to dinner....It was wonderful to see them....I love those guys.....they are like family.....

Well that's it for now....I will update more as things come in.....It feels good to have the speech behind me....only because I spent so much time thinking about it and reliving the whole last two years....I look forward to the next one but in the meantime, I will be out smelling the roses....Take care...I love you all, L.

Monday, October 18, 2004 9:17 AM CDT

Hey Guys....Sorry its been a while...So much is going on...I did update over the weekend but it wouldn't go through and I lost the whole page....Folden and I had a great time at the beach....I worked on the foundation stuff alot and he worked (played) on his boat....The weather was nice, even the rain was refreshing....We ate out, did some Christmas shopping and just hung out like we used to....I had almost forgotten how much fun he is to have around....We were ready to come back though...We missed the girls...They seemed to enjoy their time with GeeRose and Aunt Tam....Today, we are skipping school to go to the fair...and we have Clay Aiken tickets....Wow!!!! I wonder if I could get him to wear a Me Fine wristband...hmmmmm???? The goats are doing better since we separated them...The babies will come right up to us and eat out of our hands....Folden said if I had an internet connection out there, he probably wouldn't see very much of me....

The foundation is exploding!!!! I just can't believe how much is already being accomplished....The wristbands keep selling out and everyone is bursting with ideas to raise money....Not only are they sharing their ideas, they are making them happen....Some friends of mine from Princeton are working on building a house locally based on donations and volunteers...all the proceeds from the sale of the house will go into the foundation...Amazing!!!!! Some of the churches are working on laundry supplies and character blankets....We even have donations coming in for our $100 gift bags...The bags have gift cards, phone minutes, art supplies and other good things...The bags will go to each family who is admitted to Duke and UNC, (5200 and 5C)....Also, we are trying to get 35 new laptops...enough for each room in each hospital...Those are very useful to the kids when leaving their rooms is not an option...Folden IV is still making a difference!!...Thank you all who are working so hard to make this thing work....By the way, there has been some question as to where the money goes...I know so many are accustomed to seeing money fill the pockets of those in charge of these organizations....I am fiercely protective of this foundation...I have seen what the funds can do...and every single penny goes back to those hospitals and the families and children that need it...There are no administrative costs, no salaries...everything is volunteer...even our CPA....I give you my word that it will be put in the right place...There are no politics involved....These children deserve better than that....We are working on our website and hopefully I can post a lot of the stories there....I want you all to actually see what you are doing to change the journeys of these kids....We can't change what they are forced to endure medically and we can't even change the outcome, but we can sure make the ride a whole lot smoother....Take care and please keep in touch....We are all still doing okay...We miss Folden intensely....but we are carrying on as best as we can.....Love, L.

Sunday, October 10, 2004 11:54 AM CDT

Good afternoon everyone....Everything is going okay here....The pigs are beginning to adjust...They still won't let me touch them but they do wag their tails whenever they hear us coming....I woke up this morning to an odd sound...I went outside to see what was going on...I found that Folden III had picked up the goats and he and Wilson were trying to get them in the stall....I joined in, still in my pajamas and bare feet, and tried to maneuver the animals to their new home....At some point the mother was separated from her 2 babies....She was obviously very unhappy about this and began to look at us as if to say, "if one little hair on my babies is harmed, I will take you down"....The babies were crying for her and she became more and more agitated...bucking at the gate to get close to her babies....We finally joined mother and babies and I said to her, "its okay little mama...I know exactly how you feel"......They all snuggled up together as if protecting each other from the mean man and the underdressed crazy chic.....Life at the Lee house!

The girls are doing well...spending most of their free time with the animals, friends and cheerleading....Wilson is beginning to get back to her old self....once in a while she erupts with emotion but she is coming around....Folden III told me last night that he had even looked at some pictures of the baby without crying...That is a huge hurdle for him....It seems good to be back in the real world...Spending time with friends, family...Going to the games, eating out.....grocery shopping, checking the mail....It is all still bittersweet...Folden IV is with me every second....a part of everything that I do...I miss him so much....It has all allowed me to view the world in a completely different way....I smell the green grass...I am amazed at the patterns that the clouds form....I watch the birds fly by....I see people from the inside out....find pleasure and beauty in everything....I think we are all so geared to hurry and get something done that we forget to look around us and see how amazing this world really is....

The foundation is off to a good start...The wristbands are nearly sold out...in less than a week and a new order has been placed....For anyone who wants one, please email me at LoriKLee@aol.com....I will mail them directly to you as soon as our stock is replenished....We will be having t-shirts made in the next few days....So many projects are underway, it still floors me to see how much is being done in Folden's memory....My heart is really in this foundation...I know first hand what goes on in transplant world...I know how many sacrifices are required to be made by these families....just to survive....I can't change the worry that parents feel for their children but I can help to change the outside stresses that come along with leaving your home for months, not having family support during the most trying times, not having resources to pull from when your child needs or simply wants something....That is what the friends and family of Folden is trying to accomplish by establishing this foundation....We can all pool our resources and make the journey a little more bearable for those who have to travel in that direction....Sometimes, I hit a wall...no ideas come to mind...no new resources seem to be available...I guess that's my handicap...I know what needs to be done, I just don't know how to do it by myself...Each time, I pray that God will direct me where I need to go....help me to know what to do....Each time, right on cue...the phone rings, I get an email or someone stops by my house to tell me that they are ready to get something done for the foundation...."These are my resources, my assets, my qualifications...What can I do to make a difference"....and all of a sudden we are rolling again.....It just amazes me to see so many people doing whatever is within their particular means to make this foundation go....Sometimes its money, sometimes it is effort or time....others times it is just merely contacts...a foot in the door....Whatever we need always surfaces....I can't bring Folden back....I know I will not get to hold him ever again while I am on this Earth....but knowing that his journey meant something to so many people makes it all a little easier to handle....It makes the grief a little more tolerable...the journey a little more understandable....I pray that God will help us to keep the foundation alive and make changes in as many journeys as we can....maybe even all of them.....I hope you guys have a fantastic week...I am working on my speech that is coming up in a couple of weeks....There is so much to say that it would take me hours to make people fully aware of all that happened to us and the things that we learned....I'm just having trouble trying to say something worthwhile within the time allotted...I wonder if I can even stay on my feet long enough to say something meaningful....I am sure God will see me through it....or at least catch me if I fall....Take care guys and thank you so much for continuing to follow our story....Our new journey is just beginning and I promise to update more as soon as the speech is behind me.....Just know that we are all doing okay and alot of that is due to the number of people that have come together to make a difference....Love, L.

Friday, October 1, 2004 8:24 AM CDT

One month ago today, I lost my precious baby....Some days it seems like it was all a bad dream, some days it seems like it was something that happened a million years ago, some days the grief is so intense and present that I can neither breathe nor get my balance.....falling to my knees begging for relief from the overwhelming pain in my heart.....I compare this journey to a huge mountain....Each time I see my girls cry for their brother, my husband try to speak behind free flowing tears or my family's sadness, the mountain only gets larger.......There are times that I see my kids happy and content, diverted by friends or activities, my husband smile at me or kiss me on the cheek, my friends, (the ones that I know and the ones that I don't) rally together in Folden's memory to raise funds for the foundation or to share a sweet thought...Those moments tend to take a grain and even as much as a handful from that evergrowing mountain of grief....making the day a little more tolerable.....Have you ever moved your furniture around in your bedroom??? You work hard one day rearranging things and cleaning...You go to bed with your bed facing a different direction and when you wake up...before you even open your eyes, you know something is different...Not because it looks so much differently, but it even feels differently...unfamiliar......Its the same, but not the same....That's how I feel...Things look the same but they are so different....so unfamiliar....I miss that baby so much...This week has been really difficult....Nothing has changed, nothing new has happened...it has just been hard....I can't seem to get going and to compound it all, Folden III has had a difficult week....I do okay as long as everyone around me is okay...I feel like I am hanging on by a thread and it doesn't take much for me to fall and hit bottom....Folden was having such a hard time at the beginning of the week that it finally got to me....He was distant and constantly crying...The girls were scared...They said he was different..not like the daddy that they were used to....One night, after they went to bed...we talked some....We ended up in the bathroom with the door locked sobbing, missing Folden so much....I told him that no matter what we do, Folden is NOT coming back...We can either carry on or lose ourselves in the grief....and I don't think it would make Folden feel so good knowing that his mother and father were locked in a bathroom, falling apart.....I guess that was what we needed to get us going....a time to just lose it completely and make a joint decision to find a way to carry on....Since then, things have been a little better...Folden has begun to get more involved in our family and hold each other up as we begin to heal....He has laughed a little more and even spent some good daddy time with the girls.....They can really see a difference....and so can I....You know, all this really sucks....Losing my son just sucks...I don't really know a lady-like way to say it....but I do know that he is okay...and I have to go on for myself and those around me....I have to use the pain and grief in a positive way...hopefully to make a difference for others, especially my family and the families of the other kids who are trying to survive transplant....I have to carry on for the situations that God will put in my path for me to change...I have to make a difference where I can...That is the only thing that will make this journey bearable.....I don't know how I will accomplish all this...probably by the grace of God and the support of so many people who continue to follow Folden's story, email me, and use their efforts to fund the foundation.....That is all I know for sure.....We have had almost 20,000 hits since Folden died.....That is amazing....Someone is still listening and for that I am grateful.....We have raised $20,000 to date through contributions, the smiling for the kids project and other fundraisers around the country.....That is a great start....I am still planning to speak at the Women's Retreat this month and I have also been invited to speak at Wayne Community College at a cancer symposium...I have no idea what I am going to say that could possibly be meaningful but I am going to give it my best shot....Hopefully the words will come to me when the time is right....Just know that today is a better day...I still miss Folden intensely....but I am upright and trying to stay focussed....He was my buddy, one of the main reasons for my existence and the light that led my way....Life is nearly unbearable without his smile and wit....but he taught me so much and made me a better person in his all too short life....I have so much to repay him and God for and I am going to go now and get started...Take care and please stay in touch....L.

Monday, September 27, 2004 9:07 PM CDT

Hello....Not much new to say....I still miss Folden so much that I can't breathe....I think each day gets harder instead of better......Everything I do reminds me that he is not here....Our house is beginning to look like someone is living here...Folden has finished one of the barns and the girls' treehouse.....We always have a group of kids over on the weekends and David and Laney are usually around as well....I am beginning to fill the house with furniture and things...I am still working on the outside and organizing anything that doesn't move....The girls just got 2 pigs...Wilson says that her farm is finally real...Buttermilk and Milkshake have been fun to have around...They are 8 weeks old, black and white....They are cute...Wilson hurries down to the barn each day after school to check on them....That part of our life is perfect...We love living here and most days I don't even want to leave for anything...just hang out and watch the girls play or listen to the trees rustle....Its great but bittersweet....Every ounce of joy brings along a huge amount of grief....Folden is not here running around and causing trouble...He is not enjoying being here and we all miss him so much....I just hope heaven is as good as it is promised to be....Maybe Folden is out there somewhere just waiting for us....I don't see how I am going to live the rest of my life without him....Enough of that....Take care and hopefully I will be having a better day next time...Love, L.

Monday, September 20, 2004 7:26 AM CDT

Hello Everyone....Wasn't yesterday beautiful in NC....My friends from Hickory were down with their kids and my kids had a few friends over....Wow! What a weekend...Wilson cheered in her first real game...She was awesome....It was a nice weekend....The kids were up well after bedtime on Friday catching frogs...David and Folden 3 went to the beach overnight just to regroup....Laney and I watched the kids play and argue and play and make a mess and do whatever they wanted...My house looks like the hurricane came through...Folden finished the stage for Anna Gaites and started on the treehouse....Its looking pretty good...The kids are so excited to finally get some of the things they have wanted for so long...I have been staying busy...Besides the normal stuff...I have started getting rid of the spiderwebs and bugs that have made residence around my house...I was outside power washing in the rain on Saturday...in my pajamas...It was a site...But the house is finally beginning to look like home...it is coming alive.....It is all so bittersweet...With everything that Folden or I do to shape it up...there is a little sadness...I miss Folden so much that I can't stand it....I would love to see him here running around with the rest of the kids....There is a void in everything that I do....and at some point in everyday, I feel like I can't move...the grief is overwhelming....But something pushes me on...I just can't let Folden's journey be in vain....I have to carry on and make the best of what is at hand....The girls are doing well...Wilson still has her issues...She thinks that bad things only happen to her....She says its not fair that God took her brother....and she misses him so much....She is really tough on Anna Gaites...Anna Gaites can do nothing right in Wilson's eyes...She is only a nuisance....I can see that Anna Gaites is hurt because she thinks that her sister hates her....I am working on it but I feel I may have to pursue other avenues if Wilson doesn't turn around soon....

Thanks for helping to make a difference...I have been amazed at all that is going on across the state and actually in other states in Folden's memory....I have some new friends in Delaware who are working on a fabulous cookbook to benefit the foundation...Friends here are still getting the bracelets going...An auction is being planned by an old family friend...Folden and David are working on a fishing tournement and the "Smiling for the Kids" project...I have been forwarded other wonderful ideas and plan to work on those as time goes on....I want...no I intend to make a huge impact on the families of Duke and UNC....This foundation can really make a difference and I will see it through....You never know what can happen...Maybe someday it will be as big as "Make-a-Wish" or Oprah...Who knows...anything is possible when you have good support and a desire to make it happen....I just can't forget what I have seen....and I feel compelled to help in any way that I can....I hope the rest of you will join in...Everything helps...everything! Well, you guys take care...I have to go dig out the playroom....Stay in touch...L.

Thursday, September 16, 2004 8:20 PM CDT

Hello Everyone....I see that some of you are still checking in....and I certainly appreciate the emails...I am learning so much from all of you....

We are all ok, I guess....I stay busy trying to dig out my house...We still had rooms with boxes in them and all the stuff from the hospitals, (UNC and Duke) needed to be organized and put away...I have spent all week unpacking and putting things away...I did get out a little while today...The girls are doing well...They both enjoy cheering and between the practices and the games, we have somewhere to be almost everyday....Folden III is adjusting...He worked some this week and spent alot of time around the house doing projects that have been left undone for quite some time....He even built Anna Gaites a stage in the playroom that she has been asking for for nearly two years....Now, I have to get busy making the curtains....Ampa and GeeRose are coping....I can tell that Ampa is not doing as well as I had hoped, but he is a strong person and I am sure he will find his way soon....Mama has been a big help...She is helping me get caught up with all my domestic projects....She has been through so much in the last 10 years....

I think, under the circumstances, we are all surviving...I am not sure that after something like this, that you can move on...Moving on seems to come after a divorce or the loss of a job....Maybe carrying on is what is happening...I miss that baby so much that it is unbearable....He is in my every thought, day and night...I cleaned his room yesterday....I put away all his favorite things...Its almost as if he will walk in at anytime and start playing...I wish I could just hold him for a minute...but I know it would never be enough....I guess I just try to look at it as something that I can not change, no matter what I do...and I can either carry on and try and make the best of this life or I can fall down and let it swallow me up....I feel like Folden's journey would be in vain if his family fell apart....I know that is not why he came here...He wanted to make us better....I am working on trying to be better....but it doesn't change how much I miss him....

I have been taking advice from some of you...It is amazing what we find important when it all comes down to it...Our cousins, Gene and Jessica emailed me and said that one of the things that they changed in their lives was their morning ritual...Instead of having their kids get up to "Hurry up, we're late!!"...They now get up a few minutes earlier and their children wake up to hugs and tickles...That is one of the places that I definitely fall short...So I have taken their advice and now I get up a half hour earlier than everyone else...My kids get up to hot pancakes, eggs, and whatever else they like....Folden snuggles with them a few minutes while I am finishing breakfast...afterwards, he takes them to school and I get everything ready for the rest of the day...Before, I felt like I was herding them...Hurry up...Brush your teeth...wash your face...cram this cereal down your throats and let's get out of here...and then sliding into the parking lot as the tardy bell rings...hurried good-byes and frayed nerves....Now, mornings are becoming my favorite time of the day...I wish Folden could be here to kiss the dirls each morning...He loved breakfast....

I guess that's it for now...Thank you for continuing to keep in touch...It means the world to me....Some friends of Folden IV are selling "Me Fine" bracelets similar to the Lance Armstrong bracelets...All the proceeds go to the Me Fine Foundation and will be distributed to family support at Duke and UNC....For more info contact Christy Parks at CHRIS9PAR@aol.com.....If anyone has an idea for raising money for the foundation, please let me know...I am looking for a purpose...I know that I am supposed to take care of my family and I work everyday to be better at it...but I can't forget what I have seen...I need something that will help those kids....Any ideas??? I hope that God will direct me to my new position.....Have a great night...L.

Thursday, September 9, 2004 8:46 PM CDT

Hello Everyone...I hope this finds everyone well....and happy....We are all doing okay....better than I thought....I have so much to write...I wonder if I can get it all down...Please be patient as I try to organize all that has happened since my last update....

The service was nice...It was good to meet some of you....I think everyone involved sure put a lot of effort into sending Folden home....He had to know that he was loved...The flowers were so beautiful and Charlie did a wonderful job capturing Folden's spirit...I can never say enough thank yous so I hope you all know how grateful I am for everything that was done throughout the journey...

Folden died on September 1st at 8:30 am.....We hadn't slept all night and only a few hours the few nights before...Everyone was tired and Folden's sudden turn for the worse was very unexpected....Everyone there, Drs, nurses, etc...says it all happened as peaceful as they had ever seen it....I guess we got a break on that one...He sure deserved it...There is alot that happened that night that is just too much for me to go into....I have no regrets from day one but I do have a few issues with myself from that night....I will have to face that and hopefully can turn the thoughts around in some way....I do not regret praying for the end to come...Folden was tired....His job was done....I didn't want him to linger here anymore knowing what he would wake up to the next day....It was time....

That night, after friends and family had gone home...the girls and Folden were asleep...I went outside because even after so many hours without sleep...I could not close my eyes on that day...knowing that when I woke up, the day that Folden died would be gone....I wasn't finished yet and my heart was so broken that I couldn't find my breath...I found a spot on the porch and sat down...My feet hanging over the side just like when I was a child...I looked up into the sky and the tears that had been so guarded throughtout the night and the day were falling freely....I found myself sobbing and begging God and Folden to let me know that things were right....that he made his trip safely...I cried and cried and begged them to let me have one moment of peace....Peace that I had been denied for so many months....Let me feel Folden in my empty arms...Please, please, please....As I sat there, I swear that glitter started falling from the sky...I am a skeptic by nature, so I figured it had to be bugs....I moved over to the steps and asked those above me if this was my sign...I wanted something big, something that I was sure of...Not something weak that a grieving mother would desparately hold on to...I wanted a rainbow at 2am or a handwritten note from heaven...Something that could not be denied....But it didn't come....As I stood on those steps, looking up at God and Folden...the glitter started again...It was coming down as thick as snow...I just gave heaven a wink and went inside and slept.............

We left for Hickory on Friday after the service....My girls, as well as Folden and me, needed some time away to refresh and regroup....We stayed with long-time friends, David and Laney.....When we got to Hickory, everyone was hungry and David and Laney suggested a really nice restaruant a few minutes from their home....We walked in, a little messy from the long ride....It was a REALLY nice restaurant...Linen table cloths, waiters with accents, a jazz band in the corner....A little fancier than I was prepared for....We took our seats and I immediately told the girls to get their elbows off the table and act like ladies....The girls quite often ask me about my life before them...who my boyfriends were, who Folden's girlfriends were, how we got together, etc....They always give me one of those sneaky, girly giggles when we talk about it....Now, I have met or either already knew most of Folden's old girlfriends....Alot of them are extremely nice and I would consider them good friends...no hard feelings....But you know there has got to be one....I had told the girls about her and we often teased Folden about her....I told the girls that she just wasn't my favorite person and I felt like Folden wasn't thinking clearly when he asked her out...(Ok...I really told them she practiced witch craft and that they'd better watch out for Honeybun because I was sure she would boil him if given the opportunity....) Anyway, as we sat at the restaurant and I was watching how well the girls were doing...I thought, this really can't be alot of fun for them...I ordered pecan encrusted something and while Folden was ordering, I made a face at Anna Gaites...She did it back and then Wilson joined in...Laney even got caught up in it all...Folden and David were quiet and I could tell that Folden was beginning to descend into his hiding place...Anna Gaites crossed her eyes and looked over at her dad and said, "Daddy, does this look like your old girlfriend?" Folden quickly cut his eyes over to me as if to say, "I know you had something to do with that"...I just shrugged it off as if I knew nothing about it....We all started laughing histerically...(David and Laney have met her, too)....Then everyone started making crazy faces at each other....elbows off the table acting like ladies..........The meal was wonderful and the company made it that much better....After dinner, we were on our way out and the band started playing a familiar song...I took Anna Gaites' hands and we danced.....What a beautiful child....It was at that moment that I realized that she is on her own journey,too.....We all are....We all intersect here and there but each of us have our own path to follow....I am only her guardian...Her guide to find the information that she needs to make the most of her journey.....

On Saturday, we took the kids to Hickory-Dickory Dock....Its like a humungeous Chuck E. Cheese....The girls and Laney's kids had a ball....David and Folden did some boy stuff....That night, the kids and the guys made a campfire and set up the tent...they had a mini-camp out....It was fun to watch....

Sunday, we spent the day at Carowinds....Folden and I were having a hard time...but the girls were having a blast...They rode everything out there that they were tall enough to ride....As the day wore on and we could see how happy the girls were to have us around, we kind of got into it a little more...Folden even got me on the "Drop Zone"...Considering my fear of heights, I think that was an accomplishment....This ride takes you up almost 200 feet...I was strapped in a seat with my feet dangling and looking out over the whole park....When we got to the top, I heard the click and nothing happened....I gagged...Then, it released us and we dropped straight down to about 10 feet from the bottom....I said a few ugly words to Folden and then we all laughed....I thought how familiar that whole feeling was....It really explains my life over the last few months....

Monday, we went to Tweetsie....It rained all the way there and stopped as soon as we got into the parking lot....We stayed for a few hours and as soon as we headed for the car it started raining again....The girls said Folden stopped the rain for them....That was another hard place to be...The last time we went, Folden was with us and he loved it so much....I could smell him everywhere I went....I miss him so much....

Tuesday we got up and came to the beach...We can't stay at our place because of all the neglect over the past couple of years...David and Laney have a place right down the street and we are here...We will be here until Sunday....We are trying to get some things lined up to get our place back in shape....It was hard walking back in down there...We went right before Folden's relapse in December...It is obvious that everything was left with the intentions of us coming back soon....His things are still right where he left them as we were walking out the door....

As far as us...We are all doing okay...The girls are enjoying all the attention from me and their dad....They have been so brave and this time has been owed to them for a while....They miss their brother and talk about him often....Folden and I have our moments...I go outside every night and talk to the baby...Its all I have now.......I do okay as long as I am busy....Between getting this place down here remodeled and finally working on my house in Princeton, I should have enough to do for a while...I plan to get involved in the kids' school....They have been so good to us and I want to make my girls proud....Folden and I have talked so much since Wednesday...I feel like Folden IV had a job to do and he really wasn't my child...He was God's child, sent to me to take care of while he did his work...Just like I take the girls to school every morning and allow their teachers to instruct them and then pick them back up when its time to go....Folden has been sent back home....And no, I don't think he was a messiah or a saviour...He was a messenger.....just one of the little angels that God uses to teach or direct us...and he did his job well...If he didn't effect anyone else, he sure made a difference for me....He changed my whole outlook on things and made me believe in things that I couldn't see...He helped me to find my faith and to really enjoy today....whatever it brings.....I miss him so much and my arms are so empty....but I am okay because Foldie Lee was here.....and I can still feel that cool breeze that sweeps across my face, reminding me, "I am here"....but now it is followed by a wonderful, familiar voice that says, "Me Fine, Mommeeeee!".....Take care....I will be back soon....L.

Monday, September 6, 2004 9:46 AM CDT

Hello everyone, III here. Lori isn't ready to update but she will soon. I would like to thank everyone once again for everything, it was your support that helped us through this whole ordeal. As for know we all all holding our own because we know he is O.K... But we sure do miss him. I keep thinking of what Charlie said when he said if given the choice to come back he wouldn't. If anyone deserves to be happy-go-lucky now it is my SUPERMAN.

Also please don't be sorry for my family we had something no one else will ever have. We had Foldie Lee and he truly was a miracle in our lives as well as others. And as far as if their is anything you can do for us there is..."DON'T EVER FORGET WHAT OUR SUPERMAN TAUGHT US!!!!!"

Folden III

Wednesday, September 1, 2004 10:52 PM CDT

Hello Friends....I guess you have all heard that we lost Folden today....It was a long night....He started going downhill around midnight and finally took his last breath, lying across his dad's chest, holding my hand at 8:30 this morning...he fought so hard for us....The doctor told me that Folden had chosen his own path and he didn't want to go....That statement has stayed with me all day....He didn't want to go...He loved me and the rest of his family enough that he wanted to stay with us, so he fought and fought and fought....I can't tell you that it was a beautiful experience, because it wasn't....I felt God pulling him from me and everyone in that room was holding on to him so tightly...We all told him it was okay to go...He had been so brave and now it was time to rest...but I knew he didn't believe us...he knew we wanted him to stay more than we have ever wanted anything before in our lives...It was awful watching as God won....I am his mother and I had to sit back and watch as he began a new journey without me....I felt that I needed to pack his bag...make sure he had a warm coat for the cool evenings, a little money in his pocket in case he missed me and wanted to come home...a snack for the ride, peanut butter and jelly, mixed together, spread thick, all the way to the edges just like he likes it...warm socks, a flashlight and his favorite pillow...all packed nice and neatly in a new bag that all the other kids would envy...but I didn't get to do any of those mommy things...I had to send him, alone into the unknown....That was so hard....I can't catch my breath...I feel like my whole insides have been ripped out....It is just not happening, please God, let it be a dream...Not this child...Not now....I love him sooooo much....Dear God, How will I go on without my Foldie Lee.....Folden and I came home today to tell the girls...They were heartbroken....They laid their heads on our shoulders and softly cried...That is the worst kind of hurt....Folden told them about all the things we would do...trying to move their attention to happier things...Anna Gaites said that all sounded great, but it wouldn't be any fun without her brother....I wanted to die myself....I just can't believe that God took this child....We fought so hard for him...We all tried to give him our best...I hope he knows that...We never gave up....and I also hope that he can forgive me for the thoughts that have crept through my mind.....The whole experience from diagnosis has been horrible....The only part worse than failing him is the thoughts that uncontrollably pass through your mind....Just more to feel guilty about....It is all madness...There is nothing sane about what has happened...and trying to maintain sanity is impossible....I want to pass on to the other families on 5200...My journey is not your journey....Just because Folden's outcome is not what we hoped for when we crossed over the threshold onto the unit...it doesn't mean that your journey will follow the same path....You have nothing if you don't have hope...and you guys can't give up...you have to keep going and stay faithful...Expect the best outcome and keep fighting until you get it...I will be praying for all of you....and I am here if any of you need me....I know where you are and I can offer, at least, understanding....I am still family...holding your hands from afar and trying to figure out how to carry on....I have read the guestbook entries and my emails....Something stuck out that I found comforting....God has to make more room in heaven because of the people that Folden touched...I like that...I guess he just wanted to make a difference and hopefully he succeeded.....Its up to you how much of a difference that he will continue to make......I spent alot of time outside today...hoping that I would somehow hear from my baby....hoping he would let me know that he got to his destination safely and things were just as he left them....I kept picturing his beautiful white wings...spread full span and in flight across heaven....A mischievous smile on his face as he dipped down and around....in and out.....the pearly white tips covered in mud...............I just can't write anymore tonight....We have been without sleep for days and I have alot to do tomorrow to get ready for the official goodbye....Services for Folden will be held Friday at Parrish's Funeral Home in Selma....It is located at the intersection of hwy 70 bypass and hwy 301....Visitation with the family will begin at 11:30 am followed by the funeral service at 1:00 pm.....A graveside service will be held at Hephzibah Baptist Church on hwy 70 in Princeton....Friends of Folden have set up a memorial fund at First Citizens Bank in Smithfield....All contributions will be forwarded to the family support programs at UNC and Duke.....I will continue posting in the journal....I hope some of you will check in from time to time....Love always, L.

Monday, August 30, 2004 7:36 PM CDT

Hello again....Nothing much new on 5200.....Folden had a tough weekend...His breathing was terrible, his mouth is still very dry, he has a terrible rash and watery eyes, probably from the increased amounts of morphine...He mostly slept through the weekend with only a few minutes here and there of interaction...His tummy is even bigger and he doesn't seem to feel comfortable in any position...Last night, Elijah's dad came in to pray for him...It was one of those moments, you know....Parent to parent.....Barry is fighting his own battle with Elijah, also an AML diagnosis, and still has the courage to come into my room, knowing full well that this is one of the paths that an AML child can follow....By the way, Elijah is doing awesome...He has a good graft rash and seems alert and comfortable....I pray that the good news continues to flow through his life...Please check out his website....www.caringbridge.org/nc/elijah...What an incredible family....After Barry left, Folden seemed to perk up a little...He didn't need as much oxygen and he actually sat up on his own....He, his dad and I watched a movie and talked some...He asked for soup and something to drink....He hasn't been eating or drinking for days now....It was a great night...Today, he seems more comfortable as well....Folden and the baby colored and watched tv....It seems odd to see him moving around...But it is wonderful....I am still not sure what is going on...I know his blast cells are sharply rising and it appears that the leukemic cells are still sticking to his organs...His liver and spleen are increasing in size and pushing into his lungs, decreasing lung capacity....It is thought that the leukemia is also infiltrating his tissues, causing sensitivity to touch and light....He has fevers now and then but oddly, his is doing okay...He is sleeping right now...His breathing is a little fast, probably from the fevers....Overall, he is better than the weekend...One of the doctors told me today that Folden has made it clear to us that he chooses his own path....It can not be determined by predictions or probabilities....just Folden...and in my mind his is being directed by God himself....Although I don't necessarily like the whole thing, I have learned that it is not my choice to pick what happens to Folden....and I can either accept it or not....But this IS the way it is....I have chosen to accept it, but I don't like it...I still feel like God put this tiny, precious baby in my arms over two years ago and since then, he is constantly ripping him away from me....Then again, I look around and I have finally realized that everyone has a story...No one comes here without one...even people outside of 5200...I hear stories from all over...Nothing in this place is easy...Nothing in this world is easy....We just all have to learn to count our blessings on the good days and pray for strength on the bad...Now, I am not a pessimist...I am just saying that when you think you have it pretty rough, there is always someone out there who has it rougher....You may not think so, but believe me...It IS true....Sometimes, I can't believe the stuff I hear...Just makes me appreciate that God is there....helping us all through it...and one day, He will have a lot of explaining to do............As I have sat here over the past couple of days, trying to think of something to say...nothing has come to mind....But this one thought kept entering my mind but it didn't seem to come with a story...until tonight....I have been thinking alot about the different types of people I see around the hospital....People from all walks of life, all different cultures, religions, races, upbringings and on and on.....I am guilty of forming opinions quickly....I look at a person and size them up and tah dah....I have an opinion....but I have learned so much over the past year or so....People are not always who they seem....Most of my adversions come from personality....and then for some reason or another, I have been forced to get to know them and find that they are nothing like I thought...Some have even become my good friends....Tonight, I was sitting outside, thinking, pondering...just looking around....A guy about my age or a little younger sat a few feet from me....He had several earrings and tattoos...droopy pants....an old, worn ball cap on his head...dirty, scuffed shoes....He pulled out his cigarettes and lit one up...He was right in my vision spot...You know the direction that is comfortable to look into when you are thinking...I felt him becoming uneasy near me....His eyes welled up with tears, his lip trembled and he began to uncomfortably look around, trying hard not to be seen crying....In the next moment, he removed his hat, bowed his head and closed his eyes....He was praying.....I wanted so bad to move over beside him and offer the solace that can only come from confiding in a stranger....but I remembered my own feelings of not wanting to talk to anyone, not wanting to be consoled...Just wanting to be alone in my own space even among friends...So, I left him...sitting there...cigarette in hand and praying.....and then the story came to me....Everyone was put here by God...all designed in his likeness....It is not our place to judge who they are or what they do...Not even their choices...It is our job to extend our arms to everyone...Tolerant and accepting of them no matter what....Now, I know that we can't get along with everyone....but we can all appreciate each other and our differences and learn to live together peacefully....That's about all I can say about that....Have a good night and remember Ian in your prayers...His mother had him out in the hall today...He looked good but still needs your prayers....I have checked his guestbook and have been very impressed with all the entries from the "Folden camp".....I promise you that those entries mean the world to us....Take care and have a good week...L.

Friday, August 27, 2004 9:02 PM CDT

Dear God....I am sitting here tonight watching my son breathe.....He is struggling so hard and his mouth is a mess...His tummy is swollen as if he is going to ultimately explode....He is uncomfortable sitting up....he is uncomfortable doing about anything...But I know, You are already aware of all this....Can You do anything? I have watched him suffer for so many months and I just have to wonder if You know what You're doing....Did You mean to cause all this for my family and others who love this little boy so much?...Or, are You as helpless as I am?? You know, I remember the life You gave me before Leukemia...I had everything I ever wanted...Two beautiful daughters, a precious son, an amazing husband and all the things in life that I dreamed of as a child....I know I thanked You every night for my life...I talked to You constantly during the day....I didn't take it all for granted...I tried to make a difference each time You presented a situation...No, I didn't run around shouting, "This is done in the name of God"...But You and I knew about our missions...and I thought that was all that mattered.....I tried to go where You led me...and I worked hard to thank You for my blessings...Maybe I could have done more....Maybe I missed something....But couldn't You have redirected me without sacrificing my son???? And what about my girls??? They go to bed each night without their mom and dad....They feel like their whole world has been tossed up in the air and they have had to adjust to where the pieces landed...I have been a good mother...but I never prepared them for this....I realize that I have received huge blessings throughout this whole journey...things could have been so much worse.....But did this have to happen to begin with??? How could You give me a child so precious and take him away from me so soon...You knew how much I would love him before you ever gave him breath....Although I haven't done anything to deserve to keep him, I certainly haven't done anything to lose him either...Lord, I see so much that could be accomplished by leaving Folden here for me to take care of.....I am full of passion for our causes...and my passion would overflow in celebration of such a miracle...But I have to admit, a defeat in this battle would be hard to overcome...it would be hard to renew my strength enough to keep going....Are You really sure about all this??? So many people around me are hurting so deeply....Ampa has come before You countless times, begging for Your mercy....Does his plea not count?? Can't You see how much he has grown??? Why continue in this direction??? We get it....As I continue to sit here, beside my son...I have to wonder...Don't You remember how much it hurt to see Your own son suffer??? Don't You remember feeling like Your insides had been ripped out?? I am only human...Do You expect me to be able to sit by and watch my Folden die??? He could be running and playing....Glorifying You by living and thriving....Have You noticed his eyes??? You gave him the perfect shade of blue...and his laugh...Its intoxicating...His energy is addicting....I just want to be with him....I don't want to let him go....But I can tell you this...If You're not going to let him stay...then I pray that You take him now...He is so tired...He has fought so hard and been so brave....What more do You want him to do???? What else is expected from him??? I love him enough to let him go...and not see him hurt anymore...Do You love him that much??? I can say God, that I am trying hard to trust You and to look to You for guidance...You know my heart.....You know my every thought...so none of this is a surprise to You....I pray that You will forgive me for questioning Your divine plan...and give me peace and understanding...I do thank You God, for all the blessings and mercy shown to me and my family....I just hope that whenever You do get him back...You will not allow him to hurt as much as you have allowed it for me....You knew how hard it would be for me to see my baby dying slowly each day....Still blindly trusting but questioning your every move.....L.

Thursday, August 26, 2004 8:53 PM CDT

Hello Everyone....Everything is still the same...Actually, today Folden is doing a little better....His WBC is down and his blasts are down...His mouth is a little moister than yesterday....He has stayed awake most of the day....He looks better than he did a week ago....Just another hill on the roller coaster....One day, we think we're not going to get through the night, the next day, he looks well enough to take home....I feel like someone up there is trying to torment us....dangling him just out of our reach....Like the person who sent the poem, in the guestbook...Its like a tug of war with God...He gains a little ground and then its back to us.....I can't help but think, if you're going to take him...TAKE HIM....If you're going to heal him...HEAL HIM!!! I know its not my call but this is killing me...and everyone around me....But just know, that whatever happens...If Folden recovers, it is purely an act of God...No question about it....His cancer is strong and its winning for the most part....Any form of recovery would definitely be divine intervention....Maybe God is waiting for us to understand what he's doing...He wants all the credit....That's okay with me....Again, I am not fooling myself...I know what is happening and although I realize the probabilities, I know that anything is possible...Its just hard to get my hopes up after so many defeats.............But I do have a couple of happy things to report....Rebecca (www.caringbridge.org/nc/rebecca) received great reports today....No bad cells!!!! And Jordan and Kyle went home this week....I sure will miss Hope and MaryEllen...They are awesome people....And Sir Ian should be getting out of PICU...He had a little scare earlier in the week and was sent to PICU to be watched more closely....I think he is scheduled to come back sometime soon...Please continue to pray for these families...There is alot that goes with being discharged....a lot of continued treatment, ALOT of patience, a lot of worry....Rebecca's mom is stopping by for a visit...I will update more later....Love, L.

Tuesday, August 24, 2004 8:38 PM CDT

Not much regarding Folden's condition has changed....He is beginning to seem a little distant...due partly to the increased narcotics and hopefully maybe a little part of him has already reached the pearly gates....sizing things up, getting comfortable....I know this is by far the hardest thing I have ever faced....Some days, I just stop and realize what is going on...It is hard for me to believe that this is really happening...and the more I see him, the more it hits me....I am leaving tomorrow for Durham...This time, I know when I come back home, my life will be completely different...I still can't fully grasp what is about to take place....I feel like I am in two different worlds....One world with the girls is filled with happiness, giggles, sibling rivalry, and water fights....But just as I step into the other, I see sadness, grief, and unimaginable heartache...Pure agony....raw emotions....It is madness....I feel like it is time to go back, though...I have gotten the girls off to a good start...They are settled in their routine and thriving as best as can be expected in such a situation....I want to devote my time to my son now....and just as I left him in loving, capable hands...I know my girls will be taken care of as well at PHS...All the "mamas" and "daddies" will hold their hands in my absence and see them through the next few days....I thank you all for the beautiful words and thoughts you have sent our way....Please continue to pray for all the families...your neighbors, friends, enemies, co-workers and even the people you don't know...I have found that prayer is the glue that holds us all together....I will be updating again soon....Take care and I love you all....L.

Monday, August 23, 2004 7:15 PM CDT

....Once again, I come before you with news that is almost too hard to believe....Not the news that we all have been praying for, but news....Today Folden was scheduled for an aspirate and a spinal tap...He could not be given sedation because of his already weakened lungs...He is on blow by oxygen nearly 24 hours a day...The doctors were afraid that after sedation they could not get him back up...Those procedures without sedation are almost unbearable...So all weekend, Folden III and I have debated on what to do...It came down to this...If the procedure and the treatment afterwards could gain Folden enough time to go home and play and be with his family, then let's go for it...If not, then why put him through so much just to extend and already non-existent life....So we talked to one of the doctors yesterday and he basically said that the treatments, at best, could only buy Folden a couple more weeks....There would be no going home...no sandboxes...no running....The worst part is that there are so many variables in going forward with it all...Folden would be opened up to infection, more nausea, chills...and it may not get better...Last night, I sat on my steps and prayed that God would tell me what to do...Folden and I have to live with this decision for the rest of our lives and selfishly, I don't want to have any doubts that I did the right thing...I told God that I didn't know what to do and he would have to decide for me...I needed to be guided...This morning, when I got to the hospital, Folden and I talked to the nurses and got their opinions...We talked to each other and checked his counts...It didn't seem that a clear answer was surfacing...We went into our meeting with our primary doctor and he basically told us that we didn't need to go forward...Folden's liver is enlarged, his testicles are showing signs of enlargement, his breathing is labored and it was just time to stop....The blasts are not showing up so much in the blood because we think that they are now sticking to his organs and not flowing freely in the blood like before....He pretty much made the decision for us...I remember Dr. Gold from Chapel Hill once said that there are some decisions that parents shouldn't have to make....and I believe this is one of those very decisions...I know, without a doubt, that Folden received the best care at Chapel Hill and Duke and if there was anything else that could be done to rid him of his cancer, they would put their egos aside and send us anywhere in the world to get treatment....I believe it is time to stop...I just can't believe that after all this time...all these months....fighting...this is where the journey ends....And I figure, if God is going to intervene, then it wouldn't matter what I did...what the tests revealed or what treatments we chose...He would do his work regardless of my choices...So this is where it stops...They tell me I am now looking at days, maybe even a week....I have to shift gears again and get ready for that...That is all I can do now...Take care and I promise to write more later....Thanks for all the prayers....One of the nurses said that Folden had received a lot of miracles over the last six months...Even one of the doctors hinted that as well...God has spared Folden a huge amount of suffering and gave us all alot of comfort in knowing that he was happy and feeling okay...I thank God for being easy on Folden and I thank you all for speaking up for him....Love you all, L.

One more thing...Please pray for Sir Ian....He has hit a little bump in the road and he desperately needs your prayers...I know his mom is struggling with it all as well...She is an awesome mom and has stood by her son and fought as hard as she could...I know she needs some peace tonight....www.caringbridge.org/ga/ianmcgahee...Please sign in and let her know she has a lot of support...

Friday, August 20, 2004 10:31 PM CDT

...Just when you think the ride is almost over, you are taken for one more, heart stopping dip....

I don't even know where to start...so bare with me....This one is almost unbelievable....

The doctors did an RFLP test on Monday...That is a very sensitive test where DNA is extracted from the blood and the test can determine exactly what its made of....I remember telling you before that Folden was 1 percent 1st donor, 1 percent second donor, 7 percent Folden III and 91 percent leukemia....Well, not anymore...It seems that the 1st donor and Folden III's cells are not there....The blasts are down to 55 percent and the 2nd donor is up to 45 percent....I haven't been here all day because of some stuff that the girls had to do...But Folden called me this afternoon to report the test results...It seems everyone is shocked....Even the nurses say that they have never seen this happen before....I guess my grain of hope is surfacing....It also seems that Folden has a very rare condition called graft vs. leukemia...That means that the 2nd donor cells are recognizing that the leukemia cells are not good and they are trying to destroy them...Although the chances of this working are less than 1 percent...We are at least back in the game....They are doing an aspirate and a spinal tap on Monday, so once again I have packed everything up, not knowing when I will be back home....I am not grasping at straws even in desperation...I know that tomorrow could bring completely different news...All I need right now is for everyone to pray in a big way!!!! I asked Charlie what is the point in praying if God already has a plan...He gave me instances in the Bible where God changed his mind....So I am asking ALL of you to speak up for Folden...Let God know that we are all hear begging for a miracle....Ask your churches to pray Sunday...Ask your neighbors to pray...We have been given one more shot...(again)....and I need to make the best of it...I will update more as the news comes in....PRAY FOR A MIRACLE!!!!! L.

Thursday, August 19, 2004 8:36 PM CDT

Each time I sit here to write about the day's events...Nothing seems to come to mind...But as I continue to write, it seems before I know it, a whole page has been written and I wonder where it all came from...amazed myself at the words and the message....Tonight is just one of those times....Nothing new to say....So I'll begin as usual and hope that the space is filled in with something that counts.......Folden had a good day...He feels pretty good...It is a challenge to give him a bath and get him into a clean shirt....His mouth is a mess...I think the radiation has damaged his salivary glands...His mouth is so dry and to clean it requires a lot of patience for both of us....His cheeks, the roof of his mouth, his tongue and teeth are all covered with something that resembles glue....It is sticky and thick and it bothers him alot....His nose is stuffy but Folden III rigged up some suction contraption to get out most of the gunk....Folden IV hates it...He has to be held down and he screams the entire time...I told him today that I loved him enough to hold him down and suck his nose out just so that he could feel better later....I know he understands but he still doesn't give me a break during the process....Ampa is like a bulldog standing over my shoulder....quietly but sternly telling me to be easy with him....I am expecting one of them to hit me over the head any minute....Today, after the whole bath, mouth, nose episode...I was sitting with him and he just leaned over and said, "Mommeee, me love ou"....He has never said it first...It took my breath away....I know somewhere in that little mind of his, he knows I need desparately to hear it....He is wise beyond his years....I said, "Oh Baby, I love you, too...."...He replied again, "Mommee, me love ou, too..." ....Priceless!!!! Just when I think I am strong enough to let God take him back...I realize, there is not enough strength to just accept it....I can not stand to let him go.....Yesterday, we were playing with the walkie-talkies that Charlie gave him....He pressed the button and said...in his best "Uncle Blake" voice...."Hey Mommeeeee!"....Just at that moment....I realized that all the games that we play will no longer be....All the 4-5-6, Find meeees will be no more....God, I will miss that child....I miss him already....He feels good...He is not sleeping as much...I think the pain management is finally effective....Folden III and I talked some today....We both still find ourselves with a grain of hope...Last Sunday, we thought he would be gone by the weekend...Right now, he is in good shape....He has had days that were a whole lot worse....It is such a roller coaster ride...One day, we feel we need to get final arrangements made, the next it looks like we could take him home....It is too much for all of us....Ampa is having a hard time...He is still trying to search out treatments to cure Folden...He makes us wonder if we have really done everything possible or just given up......He feels like he hasn't completed his mission....I don't see how the man could have done anymore...I'm not sure Folden could take anything else, medically....But Ampa and GeeRose have been a lifesaver....They have been beside us every step of the way...and on some days, they even led....Because of their presence, Folden and I have been able to spend time with our girls, give Folden our undivided attention, and care for him in a way that he deserves....the best....I wish Ampa could see what I see...an unselfish man who gave it all up for the love of a little boy named Folden....He is a rock and I can never thank him enough for all he has given my son.....As for the girls...I think the visit went well....Folden was very tired but he wouldn't sleep until the "dirls" got there...He watched the door all afternoon just waiting for them to arrive...When they got there, they all piled in Folden's bed and the sight was just wonderful...All my babies...together....We stayed much later than we should have...Folden said, "Peeease stay wid me....".....The ride home was hard...The girls cried all the way from Durham to Princeton...An hour and a half....Spilling all their emotions....They missed their brother, they missed their daddy...They missed us all being together...They missed me being at school...(I volunteered at East Clayton when Wilson was in Kindergarten and she got use to me being around...)...It seems our lives have been a nightmare since Wilson started school...and Anna Gaites has never known anything different....They are both very emotional...They don't know how to direct their anger but it is mostly aimed at me and each other...I am trying to keep them busy and it seems to work okay...Both of them like their cheer teams and the new hip hop class...I have tried to give them new things to do so that they would have to really get into it to keep up....They are fine while they are busy and with their friends...But as soon as we get in the car or get home...It is on then....I told Folden III that I knew none of this would be easy, but my God....They are about to tear me apart....I hurt for them...and as with Folden...There is absolutely nothing I can do to change it.............My family and the teachers at PHS all prepared dinner for the families and nurses on 5200...That was so awesome...The pecan pie was a huge hit along with all the other Southern favorites....The fried chicken was the first thing to go....It is amazing to me that so many people stopped to do that for us....The families really enjoyed it...A few of us were even in the lounge today, snooping around for leftovers....I love you guys...The food and the thought was incredible...Many thanks!!!! Please stop for a minute and pray for the kids and parents on 5200...There are a lot of battles going on tonight....Some are being won...some are not....I feel helpless but I know the power of prayer....Lift these families up...They need your prayers and positive energy so much....It is how we all continue to exist....Folden and a few other dentists are doing a "Smiling for the Kids" project....He has enlisted a dental supply company to donate materials to make bleaching systems and he has donated his time to fit and complete the product....It is a teeth whitening system...You wear it as directed and over a short period of time, your teeth lose the stains and dinginess....Its a cleaner, whiter smile....These kits are usually hundreds of dollars...Folden is doing them for $100 and ALL the money goes to Duke Children's and UNC Children's....I hope all of you know me well enough by now to understand that this is a fundraiser and not a ploy to increase Folden's patient base...It is a good deal, believe me and the children and families at both hospitals could sure use the funds....You can get more information from Folden's front desk...919-553-2238....I have been really impressed with the number of you who have introduced yourselves to me....It has been nice putting names and faces together.............I can't tell you all enough how much your emails and guestbook entries mean to me....I still read each one...and some nights they pop up as fast as I can read them....As Folden's situation gets more intense, it seems your thoughts and prayers do, as well....It is all just incredible.....I have learned alot from you guys....and after all the pages and pages of entries, I still hear from "new" people everyday....I think about all this stuff a lot and try to put it together in my mind....There are some days that I wonder, what could be worse than this...and believe me, there ARE things worse....I haven't had to watch Folden die in a fire, screaming for mommy as I fight unsuccessfully to get to him...I haven't lost him to a child molester who abused him to death before burying him in a shallow grave deep in the woods only to leave me wondering what happened to him....or even worse, knowing.....I could go on and on....Somedays, I feel blessed to know that if God chose to take him, that at least his suffering was kept at a minimum...Sure, it would be better to have had nothing bad ever happen to him...but I didn't get to make that choice....I am just glad that I have had the opportunity to know him...and love him....and I love him so much....I see everyday that people have their crosses to bare...Everyone has something going on....Most everyone feels loaded down....I just think that we all have blessings that we don't recognize...They somehow get covered up in all the junk....I think I've about written all that I have....My girls are all snuggled up in my bed and I just want to climb in there with them and savor the moment...They have been tough on me today...I have found myself counting to 10 several times...Trying to realize and understand that they are hurt and confused too....But I will admit that the quietness through the house tonight is very much appreciated and will be savored until sleep comes....Take care....and make the most of tomorrow...It is going to be a great day....Love, L.

Tuesday, August 17, 2004 9:41 PM CDT

Still nothing new....Folden is doing okay considering the point we are at...The nurses are working hard to keep him comfortable...They are awesome...They can't love him like I do but they sure take care of him as if they were his parents....They cranked up the morphine today and he was sitting up and playing a little when I left today...He said he wanted to see the "dirls"...so Folden is going to pick them up from school tomorrow and take them to the hospital...We had decided that maybe they shouldn't see him because he looks so sick but I guess Folden knows best...and the girls seem to want to see him, too...I pray that it turns out to be a positive thing....I was about to go to bed...the days are long and sleep doesn't come that easily....but I had a few things on my mind that I wanted to share...I may be stepping over my boundaries now but I feel a need to pass this on....I have had so many people email me and say that they saw me somewhere and wanted to speak but had no idea what to say....I completely understand that but I would really like it if you would just say, "Hello, I am so and so"....That's about it....I would love to meet you and I know you are all praying and would change this situation for me if you could...but you can't, so just say hello...I really would like to meet you...and put a face with some of the names that I see in the emails and guestbook entries....That would be really nice.....The girls are into school, dance and cheer full swing...It is great seeing them do things with their friends...and actually enjoying themselves....They have spent too much time at the hospital hearing about platelets, lines and counts....They could probably diagnose Leukemia....It is hard keeping up with everything and spending time at the hospital with the baby....But, I have a huge support system and everything is working out with the help of my family and a few good friends...It makes it easier to have one foot in the real world and the other in transplant land...Thanks for all your offers to help out...I know you all really mean it and I wouldn't trade the thought for anything...There are alot of good people in this crazy world...Otherwise, my life is madness....there is no other word that comes to mind to describe it...One minute, I am looking for cheerleading shoes or snacks for school...the next I am preparing for a funeral...Doesn't that sound like madness....It is so surreal...unbelievable...like I am living two lives....on opposite ends of the spectrum...I keep waking up thinking this has got to be a dream...a terrible, terrible dream...Before I go, I am going to test my limits....I just want you all to know that you have been amazing....So much has been done in honor of Folden...big things, small things...So many people stopping their lives to help make ours and the people's around us a little easier...I commend you for your efforts...I hope I could have done the same had I been on the other side...I just want you all to know that we are going to be okay...Sure, we will miss Folden with every breath in our body and he will never leave our minds...but with God's help, we will get through it...So many other people before us have learned to survive it, so I know that it can be done...Nothing will ever be the same again...but we will be okay....I just want to challenge all of you to continue to make a difference in others' lives....just as you have in ours....There are so many people out there who need a hand...especially the children...sick and healthy....These hospitals will continue to operate after we are long gone...There is a kid in your child's class who feels disconnected from his classmates because his family can't afford to pay for him to participate in soccer or baseball...There is a little girl down the street who needs a ride to Bible school....another child who never gets invited to the other kids' birthday parties because she is a little different...Continue to support the people around you...Get involved in your schools and see where the needs are....Give a kid a chance...It might be the one child who just needed to feel accepted in order to accomplish bigs things later on...I read on the web that a single mom chose a class of kids when they were young...she encouraged them and offered anyone interested a college education....She saved and saved and ended up paying for 17 kids to go to school....a single mom...she gave someone a chance...and they took it...kids that would otherwise have statistically been on the streets or involved in crime and so forth....There is plenty of need out there if you look for it...God will put it in your way...its up to you to step around it or to pick it up and carry it with you....That's all my preaching for tonight...Thanks for listening....L.

Monday, August 16, 2004 9:39 PM CDT

Hello Everyone....Not too much to tell tonight...I stayed with the baby throughout the day today...He is not doing so great...He is barely speaking and he sleeps alot...He looks exhausted....They have changed his pain meds around a little and he seems to be feeling slightly better....He still asks me to sing to him and he wants me to hold his hand....Ampa and GeeRose look beat...I worry about them....Folden III is not looking too much better himself...We have explained to the girls what is happening...They hear us but I am not sure that they fully understand what we mean....They have alot of emotions but they only surface when they are not busy and things get quiet....I took Wilson to her first cheerleading practice tonight...She will be cheering for the Blue Team with the Clayton Civitans...She seems excited to be a part of it with her old friends....Anna Gaites starts tomorrow night with our beloved Bulldogs.....She is excited as well....It is a little much to keep them both going right now but I feel like they have had to stay on the sidelines for too long and watch as their friends get to do all the fun things while they spend their free time at the hospital....I guess it is good for all of us...to stay busy and to watch the girls enjoy something....That's about it tonight....Take care and say a prayer...Love, L.

Saturday, August 14, 2004 7:04 PM CDT

Hello Everyone....I hope you are all having a good weekend....I hear there is a storm coming through...I am not near a TV much so I don't really know all the specifics....

As for Folden, he is doing a little better....I stayed with him last night and I actually slept very well....Its easier for me to sleep when I am close to Folden....His fevers and rash are more under control...The docs ordered steroids to help because he couldn't keep down tylenol or motrin....He is very grumpy but his overall condition is much more comfortable....Thank God....

I just left the family lounge where some of the families were having dinner....I wish I could bring all of you here for one night to see what its like...You would feel blessed beyond comprehension....Hope is cooking dinner and MaryAnn is waiting for a piece of cake...Deondra's mom walks in as Ryan and his dad are telling everyone how much he was able to eat....We talk about Janvi who is in PICU and wonder how her mom is doing....I don't get to the lounge that much because Folden is too young to be left alone....and I regret it because I feel a need to be near them...They get it....Their own children are here battling for their lives yet their attention drifts from one family to another trying to help make everyone's stay more tolerable....They hold hands and pray, they talk to each other, they laugh, cry....Its a room full of old souls lifting each other up during the toughest days of their lives...God bless these families....Each one of them....I will always have a little piece of them with me wherever I go....

I have been thinking alot today....I was wondering about God and Folden and what the purpose for this is....I was thinking, maybe Folden was in heaven just having a good time and God came to him and said, "OK Folden, I have a very important job for you to do and I need you to leave right away." Folden said, "Oh no, Father....I don't want to go down there....Everything here in heaven is so much fun...and I'm next on the cloud ride." God looked at Folden and said, "But son, I really need you to do this for me....People are forgetting what is important...They are so concerned about interest rates and going first and being the best and I need you to help them to see that its not those things that make life on Earth so good." "But Father, I love it here, and angel class starts soon...Why do you want me to go?" "Son, there is a family who really could learn a lot from you...I want them to enjoy life and savor all the good stuff that's out there...I want the people around them to come together and restore their faith in each other....and me. I want their friends and friends of friends, regardless of race, religion and financial status, to hold each other up and learn to take a deep breath of life....I want them all to turn to Me...I want them to help their neighbors and others that they run across in their lives and I want them to realize that they are all in it together and for each other...." But Father, "That will take me forever, when can I come back?" "I promise to help them to learn it all very quickly, you will not have to stay long..." "Okay, God...Let's get this over with, I don't want to miss the next ice cream lunch with Jesus." "Son, I am going to give you a huge heart and extra love to share....I am going to place in your soul a bright light that will shine intensely on the people around you who are going to love you so much....They will want you to stay more than anything but I promise to honor your request and bring you back as soon as your work is done....They will see you again...." "OK God, Let's do it..." I wish I could know that it happened like this...I just wonder what I said when God told me to come here???? An old friend of mine sent a poem that her mom had on the refrigerator and it basically said the same kind of thing...I found the timing odd....Maybe God is trying to tell me everything is going to be okay....I have more peace tonight....Folden III and I are staying at the hospital together tonight....It is good to be in his breathing space....We hardly ever see each other....Take care everyone...I love you all....L.

Friday, August 13, 2004 7:33 AM CDT

Hello Everyone...I did update last night but as you probably know...the website went down and I lost it all...I had been typing for at least an hour...I will give you the short version....

I have assessed my guilt and find that it doesn't come from being with the girls and not Folden...It comes from not wanting to do this anymore...I have been with Folden and focussed completely on him daily for almost a year and a half...I have held him down for IVs, watched him scream, cry, beg, hurt...you name it...I have seen some pretty tough days, wondering if he would even make it until morning...I have held his hand through it all...My guilt comes from the fact that I don't want to see it anymore...I want to take him away...go fishing, read a book, go to the mall, step in a few puddles, chase the dogs, anything but go back to that hospital and watch him suffer....So, there is my honesty for the day....

As for how things are going....I can tell you what is happening right now, but it could change before I even finish typing....Wednesday, he was not doing so good...I was worried that he wouldn't make it through the week....Folden was keeping me posted throughout the night and we even discussed our plans for the next phase of this journey....His sats are low...he is covered in rash....he is nauseated and somewhat dehydrated....I went to sleep with the phone and had all my stuff beside the door just in case I needed to make a quick exit and head to the hospital...I knew the end was near.....I woke up yesterday morning to the sound of the phone ringing...FW had excitement in his voice....Folden's blasts had dropped 20 percent and it seemed the little girl cells from the boost were kicking in and trying to grow...again, there was hope...We all breezed through yesterday thinking we had one more shot....This morning Folden called and the cancer has tripled over night...His sats are even lower and he is not doing well at all....Up, down, up, down....Welcome to my life....It just seems like we just keep getting beaten up....bandages and healing ointments are applied and we are kicked back into the fight again only to be beaten worse than the last time....This seems to keep happening over and over....and we are all tired....especially my son....It gets worse for him each day....So today, I am packing up once more, not sure when I will be back...not sure what to do with the girls and school...or anything else for that matter....It is no longer one day at a time...it is moment by moment....never knowing what to expect....

Thank you all who have supplied dinner for my family this week....It has really been enjoyed....Thanks for your constant thoughts, prayers, and encouragement....I sometimes get taken back a little when you write about being inspired...I reread my journals and don't really see anything inspiring...I wonder if I overlooked that page....It is you that inspires us....We certainly aren't suprised that our family supports us...I have an awesome family...They have always stood right beside me and held my hand through everything that I have faced...Aunts, uncles, cousins...I am blessed to be in this family....Its the people that I don't know that well that really surprises me...People who stop their own overscheduled lives to fix us food, drop a note, pray, and simply care....It is almost more than my broken heart can take....You are all the inspiration....and I will never, ever forget the kindnesses shown to my family....L.

Wednesday, August 11, 2004 7:34 AM CDT

...yes I am still here....I don't know what to write because I really don't know what I feel and the two go hand in hand in my world...I can say that all of this is really not as you would expect....The feelings that I have are not what I thought I would feel in a situation like this....I know that it hurts...It hurts so much that I can't even describe it....It hurts so much that I try to avoid feeling....afraid of what would happen to me....We are just getting through each day....Folden has good days and bad days....He wants to come to "mommy's house" sometimes, other times he wants to stay in "his bed"....Yesterday, I didn't think he was going to feel like coming home so I headed to Durham....just as I walked in the room, I saw that he was ready to go...I gladly loaded him up in Ampa's fast truck....When he got here, he played and felt really well...It was a good day....We even napped for a while....Right now, he sticks close to his dad...Everything is about Daddy....and that's okay with me....We all need a piece of him to carry with us through the long days ahead...The girls are doing great....Wilson has some of her animals back home....She sticks close to me but has enjoyed taking care of her animals...She wakes up every morning and feeds them and loves on them for a while and then its off to school....Anna Gaites is just oblivious to the whole thing....She misses her dad alot and falls asleep crying most every night....They both seem to enjoy school...and they love their teachers....That has made things alot easier for me...I know that I am doing okay with my girls...giving them something to count on....Mommy's here....and all is well....But it doesn't help with the guilt I feel for not being in Durham with the baby....I know he is taken care of and I know that his every need is being met...He is perfectly happy....but I can't seem to overcome the feeling that I have abandoned him for the girls...for home....I know that I can't be in both places at once but it sure doesn't seem to change the constant, overwhelming feeling of guilt....I am going to try and work things out so that next week I will be able to spend some nights with him....I miss him so much....I look around at this place we call home...I picture all the things that will never be...like blank photographs running through my mind....an empty scrapbook with just page after page of nothing...No homeruns, no first day of school, no broken arms...I try to go over all the memories of Folden as a baby....The memories have oddly been erased from my mind as if they were burned in a fire...I reach down deep into the ashes looking for some little corner of a memory but it doesn't surface....Once in a while, I remember a moment, way back when and find myself getting lost in what was...what could have been...I guess its a blessing that my mind has chosen to limit my memories of the past...I would hide myself deep in it all....I am sure it will all come back to me when I am more able to deal with the beautiful images of a little boy taking first steps, spilling baby food all over the floor and sleeping peacefully in his crib...Maybe it will all come back when I need it most...like an unexpected gift....For now, I try to treasure every breath he takes, every little thing that makes him smile, every kiss on my lips....I hold my girls tight and try to give them something normal, something that they haven't had in over a year....and as for God, I am not mad at him...just extremely disappointed....I can only hope that he never allows Folden to hurt as much as he has allowed it for me....L.

Sunday, August 8, 2004 9:16 PM CDT

...The long version:

Folden was having a decent week last week with only occasional bouts with nausea...We left the hospital on passes but as the day passed, he wanted to go back to "his room"....The doctors started switching all his meds around and I felt like they were getting things set up to discharge him...Sure enough, they came in at the end of the week and explained that so many kids are waiting for rooms on 5200 and we needed to either be moved to another unit or take Folden home....Well, you know I am a planner, so that sort or threw me there for a minute wondering how I was going to get everything in order for Folden, school, the girls, me...etc...etc...etc....Half of our stuff is in Durham, some in Princeton, some scattered here and there...I didn't even have anything in the refrigerator or the pantry...nothing!....So, everyone kicked in and cleaned out the apartment and the hospital room...Wilson and I headed home to reorganize things here...Our trip to Walmart was probably the worst....Tax free weekend!!! We ended up with two buggies full of stuff and three hours later we were back home trying to put everything away....It has been tough....In the meantime...FW, Rose, Blake and Folden have been bringing Folden IV home on passes...It was okay the first day but Saturday when they left, I was soooo worried...Folden was almost lifeless...When he got back to the hospital and the nurses hooked him up, he perked right back up...Folden III and I talked a little and decided that bringing Folden home long-term was just not in his best interest....He needs maximum care and as things can change in the matter of minutes, we want someone who is capable of keeping him comfortable...This morning, before they left on pass, Folden III talked with the doctors and let them know how we feel about all of this and what we think is best for Folden....The doctors are hopefully making arrangements to continue care at Duke....Today was much better...Folden got here and played...My mom cooked an awesome lunch and some of my family brought desserts...It was a good day...Everyone was here...even Jim...our good friend from the Best Buddy program...Folden was very active today and didn't sleep at all while he was here....I really enjoyed today...and I think he did, too....Folden and Jim took him back mid afternoon and the girls and I are here still trying to get everything ready for the days to come...I don't know how many times I have moved into this house in the past year....But we are all doing well with having switched gears so many times in the last few days...I think Folden will be happier with the way things are...and no matter how much I want him at home, its just not worth it to see him suffer and not feel well, knowing that if we were at the hospital, it all could be different...We are trying to work out a plan so that I can get the girls to school and play some sort of constant role in their daily lives as well as be with Folden IV everyday....It is going to be hard, but nothing about it has been easy, yet....I can't tell you how much all of this hurts....The hurt is so overwhelming that I can't even begin to explain it...I guess its good that so much has happened over the last few days...I have had to stay busy getting things put away, laundry done, lunches packed, things organized....Its when I get still that I fall apart....I see it all taking its toll on the people around me, too....I know that I am not the only one that is devastated and I hurt for the rest of my family as well....We sure were hoping for a different outcome than what we are getting....I don't know how we are supposed to go on without him...He is the flame that we all gather around for warmth....The girls start school tomorrow...and Folden IV will hopefully be here mid-morning...We will all take it as it comes and deal with it as needed....Take care....Love, L.

Saturday, August 7, 2004 11:38 AM CDT

Hello...Just a quick update....Folden is coming home...It seems that the doctors have done all that is humanly possible and the cancer is still winning...We realize that other kids are waiting for our room and it is time to move on....Folden has spent the last couple of days here and all of us are trying to get everything in order for his discharge tomorrow....We've been gone a long time so we are all working overtime to make this a safe, happy place for him to be....Thanks again for all the prayers and support...I will write more later...L.

Thursday, August 5, 2004 10:06 PM CDT

Hello Everyone...Its me again....Today went about as expected...Wilson and I spent the night at home last night and attempted to put some things in order after months of being away....The girls' lunch boxes from last school year were still in the back of my car...Yuk! We cleaned out the refrigerator, organized clothes and school supplies and went to bed....This morning, I took Wilson and Anna Gaites to get their nails done, a beginning of school ritual for us since Wilson was in Kindergarten...FW called and said the baby had a tough morning with the nausea but Andre', our nurse, had given him something for it and he seemed to feel a little better....This afternoon, FW and GeeRose took the baby by the dental office and to their farm to see the cows...He didn't want to stay long...so they took him back to "his room"....Folden III went with me and the girls to open house....Anna Gaites will be in Mrs. Creech's class, and Wilson will be in Mrs. Langdon's class...I feel like they are both in good hands...Mrs. Creech was Wilson's teacher last year and I know that Anna Gaites will learn alot as well as mature alot over the next year...Mrs. Creech is an incredible teacher and one of the most admirable women that I have ever met....Mrs. Langdon, Wilson's teacher, rode my school bus when we were younger....She and I went to the same church and we know each others' families...I feel good about Wilson, too...I know she and Mrs. Langdon will have a good year regardless of what direction our lives go in....It was good to see everyone again...Princeton is just a unique place...Its all family....I feel so lucky to be able to have my children there...They will learn so much from just being a part of the Princeton community...After open house, we all headed to the hospital...We made a dinner stop at Pancho's...That was nice...Folden and I haven't had dinner together in a while....It was just hard for us to sit there and watch all the families around us....There were kids at almost every table...slurping up cheese dip, moms wiping noses, forks full of food hitting the floor...I was so close to tears...Not because I would wish this on anyone else....Its just seeing everyone taking the same things for granted that I did a year ago...I wondered if any of those families realized how wonderful and rich their lives are?....I left there feeling pretty down....Why MY son....Why Folden...I guess its like Lane's mom said...Why not me???? I choked back the tears and headed for the hospital...Folden seemed to be doing really well when I got there...He was tired but he still had a few giggles left in him....He wanted me to sing to him so he could go "night-night"....My pleasure!!!! Somehow, between the time I left the hospital and getting to this apartment...I completely lost it....I was so overwhelmed with it all...My God!!! Please, please, PLEASE don't take that child away from me....PLEASE!!!! By the time I came inside...I was reduced to tears...I tried to talk myself through it, but that doesn't work as well as it use to....I don't know how to do this...I really don't...............I've read a lot of emails lately from mothers of kids like Folden....Each one loves her child just like I love mine...Each one hurts and worries, just like I do....Each one can't see why God would take her child away....Just like me...Each one amazes me with her honesty....Each one has guilt...Each one feels weak....Each has her own story....The details vary, but the story is basically the same....Each story makes me feel better about myself...Just when I feel like I've let Folden down....another mom tells me she feels the same....Each time I feel weak from all the stress, another mom comes along with the same thoughts...I guess we can gain strength from each other....Resting on the fact that we are simply normal....and scared.....Keep praying for Folden and all the kids....We continue praying for our miracle....and walking on water....(although the seas are getting rougher everyday)......L.

Wednesday, August 4, 2004 8:49 PM CDT

It has been a good day....It started out just like all the other days have lately....I went to the hospital this morning and Folden was still sleeping...He actually slept until noon....When he woke up, Aspyn, Alexa and Aunt Tammy had come for a visit...I had brought him a few new toys and we all dug in and started playing....I walked outside with Ampa and we talked about taking Folden home (in Princeton)for a little while....He hasn't been home in 5 months....I wondered if he even remembered where home was...Wilson and I left the hospital around 2 to come home for a couple of appointments and to get ready for open house at school tomorrow...After I finished my appointments, Folden III called and said that they were at Ampa and GeeRose's house and on their way to Princeton....They drove in the driveway right in front of me....I grabbed that baby up and held him as tight as I could...I didn't think I would ever see him here again....He came inside and was quickly reminded of all his old favorite things....He played with a few things, looked around, grinned a little and really made his mommy smile....The whole experience was priceless....Just another one of the memories that I will cherish for the rest of my life....It was wonderful to hear the echos of laughter flowing through the house....Toys here and there....The familiar smells....For once, I was glad to be home....However, it was short lived...He soon wanted to go back to his bed....I tried to get him to get in my bed where he has fallen asleep watching "Bob the Builder" so many times before...but he wanted to go to "his bed at the hospital"....Now, it is quiet here once again....except for the sounds of happy crickets outside....I can sit on the back porch and listen to all the peaceful sounds of the night....but all I hear are the voids...The lack ofs...The never will bes....My heart is broken into tiny pieces and I know that will never change....I had my hair cut today...It was long past due...As I watched her cut and color and fix the damage that neglect has caused, I noticed my face...The stress....the new wrinkles....the hurt...The worry and pain....Just war scars that no amount of make up can cover....I haven't really taken a look at myself in a while...I can't believe the changes that a person can go through in a year....The whole story is very telling on my face....probably more descriptive than any words I could ever write...I have heard from several moms who have traveled this same journey....I hurt for them...as well as admire their strength for trying to console me....Simply, I am just numb....scared to hope...scared not to....I will check in again, soon....Love ya...L.

Please add another special person to your list of websites.... www.caringbridge.org/ky/lanehancock

All of these websites have either been emailed to me or I copied them from the list kept on the unit....If there are any others out there that want to be added....please forward them to my email address....

Monday, August 2, 2004 8:42 PM CDT

Hello Everyone...Thank you for continuing to sign in even in my absence....I thought I would have more news by now, but nothing has really changed...Folden started feeling really bad a couple of days ago...His throw up sessions increased and he completely stopped eating....Each time he drank, he would lose it...He didn't feel like leaving the hospital and he basically just slept....nothing seemed to interest him...His oxygen level was down and his heart rate was up....I considered dehydration but the doctors thought it was related to his meds or his circumstances...Last night, Folden III called and said that he had suctioned the baby's nose, the nurse had added fluids since he hadn't been eating and scheduled his TPN to be increased...His mouth was really dry and sticky....I told Folden that I was worried because we had agreed to the DNR....and I wondered what would happen if he bottomed out now with symptoms completely unrelated to the leukemia....So Folden bravely tore up the DNR order....Today, Folden IV was much, much better when I got there...He was back to dancing, laughing and I could tell he felt more like himself....He still doesn't want to leave the hospital...The doctors tell me that is common among transplant patients...and he doesn't seem interested in food...but he is active and happy once again....Yesterday, we got preliminary results from his blood....There were two slides...each one contained only one cell and they were both different...Dr. Driscol said it was too early to tell and that maybe at least one of them looked like an immature cell....So, I thought that news wasn't so bad...It could have been so much worse....Today, his differential showed 9 blasts but the doctor never reviewed the slides because they were lost...So he wouldn't say either way...They will run another one tomorrow...The important thing is Folden feels better and he is once again enjoying himself...Tonight, some friends of ours commissioned a chef to prepare dinner and deliver it...WOW!! That was wonderful....There was so much of it, I took it to the hospital for Folden III and the nurses...When I got there, the baby was sleeping and three off-duty nurses were all sitting on the bed with Folden and the baby...They were having a mini party, it seemed....I heated all the food and we all sat around enjoying the moment....Folden and I walked outside for a few minutes to talk about things....remember, I only see him about 10 minutes a day....When we went back, the nurses had Folden IV up and playing...They were all laughing as he entertained them with his charm and wit....He still amazes me after all this time....We all started talking about some of the funny stuff that had happened over the past 5 months...It was like having some of my best friends over to hang out...I don't know how they do it year after year...Child after child....but they have all certainly made us feel at home and at ease....Earlier in the family lounge when I was heating their food, I was talking to some of the other parents....They were all talking about the different situations that their children were in...One is having seizures and short term memory loss, another is not sleeping...the stories go on and on...The one thing we all agreed on is the love and support from family, friends, and people we don't even know...It keeps us afloat....One mom walked out and said, "Good night, Love you!"...I thought, sometimes we throw that love word around but I know that here it is deeply felt...There is a connection among these families....a life changing event has brought 16 families together....families come and go and the faces change but each one leaves something behind...each one takes something with them....The new family next door stopped by to leave something for Folden....Others, in the midst of their own battle, have thought of Folden and the other kids....I feel honored to be a part of such an incredible group...I wish the world was that way....Everyone pulling together and leaving no one behind....I have made life long friends with so many different types of people over the last 14 months...People of different religions, different races, different upbringings, different cultures...and I love them all....I really do....I have learned to look inside a person for the real stuff....To give them a chance...First impressions are not always on target....Again, we all need to lighten up....Well, that's about it for tonight...I don't have a lot of emotional stuff to write because I remain numb at this point...I think we all are...It all gets harder everyday and with school about to start, I know that we are going to all be split apart again...So, we all just try to stay positive and realistic....and keep putting one foot in front of the other...Have a good night...I have listed a few of my friends' web addresses...Please sign in....It really does make a difference....L.

www.caringbridge.org/nc/hunter.jones99
www.caringbridge.org/vt/nicolasroy
www.caringbridge.org/id/annabellegreen
www.caringbridge.org/ca/jhyrve
www.caringbridge.org/vt/spunkin1031
www.caringbridge.org/nc/breanna.nicholas
www.caringbridge.org/ca/spencerrocket
www.caringbridge.org/fl/jman
www.caringbridge.org/nc/connorscott
www.caringbridge.org/va/wyatt
www.caringbridge.org/nc/meredith
www.caringbridge.org/tx/janvi
www.caringbridge.org/va/ryansmedley
www.caringbridge.org/nc/deondra

**If any of these fail to load, let me know so that I can check the address....

Friday, July 30, 2004 9:44 PM CDT

Today was an okay day...Folden started out with his normal throw up session...The nurse, Bobby, gave him some stuff for nausea and he slept until about 3 this afternoon....Folden III took him for a ride and they ended up at the boat...Folden IV decided he wanted to ride, so off they went....Afterwards, he wanted to go back to his bed...I went back to check on him and he was feeling wonderful....He was laughing and giggling alot and looking forward to spending the night with his dad...He told me to go home right now....At least he's happy where he's at...Our nurse tonight is Cheryl, so I know they are both in good hands....Thanks for all your emails and guestbook entries, I really do read every single one...I appreciate all your positive input....I don't write this stuff to get a reaction...I just try to keep it as honest as I can...The good and the bad....I have learned alot about myself over the past year and especially lately....Some days I am not who I thought I was, other days, I am better than expected...I guess that's okay....I just want Folden to get well so that this nightmare can finally be over....Have a great weekend...You guys really deserve it...Say a special prayer tonight for Rebecca, who is getting test results next Tuesday...for the kids currently on the floor, like Hunter, Meredith, Caterina, Janvi, Kyle, Ryan, Gary, and the others...the ones on the way, like Elijah and the ones who have left, like Nicolas and Ian....I am going to try and post the websites for some of my little friends in the next day or so....I am sure that they, like me, would enjoy hearing from all of you....Love, L.

Check out the new pictures!!!!! F III

Thursday, July 29, 2004 8:08 PM CDT

Hello Everyone....I hope you can overlook me tonight...I am in a very dark mood...I don't know what caused it...Sometimes it just happens...Our morning started out okay....F3 reported that Folden slept well last night and his counts were up to .2 this morning.....That is all Folden IV's cells...We don't know if there are good or bad cells growing...just something...I went to the hospital as usual and Folden was still sleeping...After waking, he seemed to be feeling good but he started throwing up again....He hates that...He is not eating more than a bite or two each day so it consists mostly of juice...We got through all that and started getting him ready to leave for a while....He finished his meds and we were gone by 11:30....He said he wanted to go to Bojangles, so off we went....When we got back to the apartment, Wilson and GeeRose were waiting....He seemed to have a really good time...I chased him around the place and he squealed and giggled....Wilson and GeeRose helped him build a huge lego thing...After about an hour, he said he was tired and wanted to go back to his bed....We stalled him until F3 got here...They went riding in the truck instead....Even after that, he insisted on going back to his bed, so Folden took him back...Not only does it bother me that he doesn't feel strong enough to be out of the hospital for more than a couple of hours, but for him to see that bed as his is hard to take...His bed is an hour and a half from here, in his room, in his house...a place he doesn't even remember...That one thought started bringing me down...Wilson and I went to the grocery store and came back and started working on dinner....The Foldens were at the hospital trying to take a nap...Then, GeeRose and Ampa headed back to check on him....F3 left to ride to Jordan Lake to check on his boat...I talked to Folden nearly his entire trip to the lake and back...I told him how I just feel tired...everything that I do is such a struggle and I feel like my efforts are not accomplishing anything...I feel worthless....I just want to crawl into bed, pull the covers over my head and hide until this passes....I feel like another mother would be out there on the front lines, wrapped in armor and swearing off any enemies that crossed her border....We've just been doing this so long and each day gets harder....Its not like it is on tv where there is a terrible accident, a flash to the operating room and then a victorious walk out of the hospital...Or on the other hand, life changing news, a few sad scenes and then a grieving family standing over a casket singing "Amazing Grace"....Its not like that at all...It is moment after moment after moment of struggle....Everything is different...Nothing is familiar...Sure, there are a few great moments everyday....and there are a few tough moments everyday...The worst part is the waiting....Waiting to see if we can leave...waiting to see if he feels okay....waiting for test results....waiting to find out what the test results mean....and especially waiting to find out if we can take him home.....and during all that waiting and idle time...my mind goes from one place to another....wondering what is going to happen next....trying to prepare myself for the good or the bad...never prepared enough for either....never getting what I was expecting....Its all just a huge, jumbled mess....and Folden is caught right in the middle of all of it...and I worry about him so much....How does he feel...what does he think...what does he want....So much of this journey is not about the beginning or the end....Its all the stuff in the middle....I want to do it all right...give it my best shot...be a mom that my kids admire because they know I gave them all I had and then some....but I find that the daily requirements for that are way out of my reach....I can barely keep myself together....functioning....sane.... If I didn't have so many people here to lean on, I don't know what I would do....My mom has often told me that being a mother is made up mostly of guilt...We never think we do it thorough enough, fast enough, right enough, etc....We always wish we had done more or done it differently...So I guess, as we lighten up on our families, we should also lighten up on ourselves....in every aspect of our lives...We should stop striving for perfection...or setting impossible goals...We should just do the best we can and consider that adequate....Folden III told me that....For someone who can't find the laundry basket or the dishwasher, he's a pretty smart guy....I even spoke to Cheryl, our primary nurse, and she agreed with all that Folden had said...She said several families over the years had confessed the same feelings to her...I guess the parents just feel helpless and nothing we do seems to make a difference...after a while, it starts to effect our thinking....I went back to the hospital tonight to check on the baby...He was laughing but a little tired...Right before I left, he drifted off to sleep....Blake is there with Folden and they are planning to watch a few movies...Blake stays with Folden III and IV at the hospital several nights each week....I know they look forward to seeing him....Cheryl is our nurse tonight and most of the ones from our team are working as well...It will be a huge party throughout the night....Its like having good friends staying over....laughing and joking...I hope the baby sleeps good tonight and feels well enough to leave for a while tomorrow...I think we all look forward to his passes more than he does...Say a prayer...Love, L.

Wednesday, July 28, 2004 7:54 PM CDT

Another day....Folden had a better night last night...He didn't get sick and F3 said he slept through the night...He felt pretty good when I got there this morning...They finished his meds around noon and we were out of there...FW and I brought him to the apartment and he even ate a french fry....He was so excited to see his sisters and Aspyn and Alexa....Shortly afterwards, I could see him winding down and knew it was time for a nap...Ampa rode him around and after he fell asleep, I put him in my bed and curled up beside him...He tossed and turned and whined...He wanted to go back to "his bed"....I knew our pain management was not working outside of the hospital and would have to be addressed before another trip out....But while we were snuggled up...I was just looking around the room, thinking and thanking God for another moment to just hold his warm little body...smell his neck and listen to him BREATHE....Right before me, I saw a little whisp of something pure white...It's shape reminded me of maybe throwing a rope up in the air that had been tied together at the ends...sort of an oblong, abstract circle...It looked to have the texture of stringy, silky thread...It only lasted for 2 or 3 seconds....I looked around the room for a reflection or a shimmer from my watch or a mirror or something...Nothing seemed to explain its existence...I cautiously wondered if it could have been a glimpse of an angel....??? I hope so...It was not a huge event like you would expect when seeing a real angel...Maybe it was just a subtle reminder to just keep on going....(Don't worry, I have people watching me for signs of senility or breakdown)...After a while, we decided to take him back to the hospital...They hooked him up to his PCA pump and within 45 minutes, he was fine...We are working on some sort of drug replacement before tomorrow....Otherwise, things are going well...He had a good time today....I have spent alot of time reading the guestbook and emails...Wow!!! You guys are amazing...I am taken back a little, even alot in most cases, by the stories that are getting forwarded to me....People who are praying, that don't even know Folden...people who have made a new or renewed committment to God...people stopping to smell to roses more....people changing from demanding jobs to jobs that may not pay as much but afford them more time to spend with their families...I have never been a part of anything like this before...nothing even close...I hope I can continue to find the words to explain this journey...Just remember that this is my story....It is not necessarily right or wrong, just my thoughts....Everyone around me has their own story....and it is just as intense as mine....My sister-in-law called me a day or so ago...I could tell that she was upset....She said, "Lori, I am dying inside"....and not that I didn't think anyone but me had been affected....I know they are all just as hurt and worried as I am....I have watched GeeRose cry until she could cry no longer...I have seen Ampa fight tears more than once....I see my mother as she tries to contain her grief and fears...I see it all....Even friends and family that are not here everyday to watch it all unfold...I know everyone close to me is devastated....and that hurts, too....I can't help but continue to wonder why God is doing this to my family....Why each person has to suffer so much....and especially, Why Folden???...I asked Folden today why God had sent him here...He said, "Me not know"....I said, "Think about it"....He thought for a moment and he replied, "To play"....Well, you know me...I have to analyze that into the bigger scheme of things....I thought that maybe God wanted us to stop taking things so seriously, and play....Don't skip over the mud puddles...let the mess stay on the floor....impress your guests with your kid friendly home rather than with the designer sofa...leave the dishes until tomorrow and ride a bike....watch your kid play ball not because he's the best pitcher out there but because he simply loves to throw....Life can be so much fun...especially with your kids....Its not the time spent ON them that matters, its the time we spend WITH them that makes a difference....Maybe I'm wrong about it all and I am just looking for things to make me feel better...grasping at straws....but so what....My kids are so much happier since I just lightened up....and so am I....One more thing before I go....No matter what the outcome of this journey...Don't let it dampen your faith or your attitude....We all need to continue to look toward God...finish all the things we have started....and make a difference as much as possible....Keep praying and I truly love you all....L.

Tuesday, July 27, 2004 6:57 PM CDT

Last night I stayed with Folden IV....Folden III still didn't feel well and the doctors suggested that he just stay in Folden's room so that the nurses could keep a check on his blood pressure and heart rate, etc...We had a chance to talk a little and our conversation was riddled with tears, what ifs and then whats....Folden has never expected me to be anything different than I am...He sees me in my rawest version and accepts that.......Although I was full of hurt and pain and a whole gamut of other emotions, Folden was quiet...Just listening and reassuring me that we would get through this...After I updated the journal, which has become as vital as food...All the words keep bouncing around in my head like some bad grocery store jingle on the AM station...I have to write...It is the only way that I can orgainize my thoughts and clear my head....After I write, I can then focus on something else....I started reading the guestbook entries and countless emails that I received...New ones popped up before I could finish the last...It was amazing...So many people are out there praying and hoping and simply caring....Even this morning, the correspondences were still flowing in from all over the country....It is hard to believe that so many people take the time to check on us...We had nearly 3,000 hits in less than 12 hours...Most of you are praying for a miracle and strength for my family...Well, let me tell you...I can see that at least part of it is working....I couldn't sleep last night...I just sat there as the baby and Folden slept, feeling hopeless and defeated...I just wanted it to be over....The baby woke up at about 2:30 and stayed up until about 5...He is not eating and something is causing him to throw up alot....The doctors think it is the infection, but as usual, I disagree with them...after all these months, I think they have come to expect that from me.....Anyway, there were a couple of episodes with the vomiting....So it was a very long night for me...I came back to the apartment this morning and talked to Folden a little...We were both just lost in our own thoughts....Nothing much left to say....Then Folden left and I had planned to go to sleep hoping to replace some of what I had lost last night...Kinda recharge and head back to the hospital...Folden called me and said he had talked to Charlie...Charlie was the pastor at the church we attended some before Folden got sick...He has since moved to a church near Greenville but stays in contact nearly everyday....He has been a vital part of our battle...He keeps us focussed and headed in the right direction...Thank God for Charlie...Folden talked to me with almost renewed hope...He said, "It ain't over yet!!!" Well, I certainly listened as he talked about miracles and hope and possibilities...and certainly we both know what we are dealing with...Neither of us have blinders on...We are well aware of the situation...But it seemed good to feel like fighting again...So, I stood up, shook myself off and headed back to the hospital...Sleep could wait...Folden IV seemed to be in good spirits and asking to leave the hospital...We had to wait for the donor cells to be hung and never actually got to leave there today...maybe tomorrow....I talked with the baby and told him to tell those angels that he wanted to stay here with Mommy...They could come back for him when he was an old man...When I left the hospital, I asked him what he was going to tell the angels...He said, "Me want stay with Mommeeeee"........I hope they listen....So today, we have the renewed strength that you all have been praying for....Hopefully, as our prayers continue....Folden can somehow, miraculously beat the odds once more and get to hang around for a while....Can you imagine the lives that would be changed from witnessing a miracle?....God has certainly brought us to our knees...in every sense of the word....and we know, at this point, beyond any doubt...It is all in God's hands....Keep praying....Keep praying....Keep praying...."It ain't over yet!"....L.

Monday, July 26, 2004 6:38 PM CDT

Once upon a time...I had a great life...Two beautiful daughters, a great husband....unbelievable friends and everything else that you hope for when you're a little girl...Then came Folden...The first time I held him, he wrapped his tiny little arms around mine and instantly, I was hooked....Life only got better...Everything about him filled us up with happiness....Everyday wasn't what I had hoped for but it was still better than I could have ever expected...I often wondered what did I ever do to deserve this life...I started all my prayers with, Thank you God for my life...I don't think I ever took one moment for granted...That was a cup of my life, and I drank it up....Now things are somewhat different....Friday, we all waited to hear the final word...I knew by the looks on everyone's faces that the news wasn't going to be what I was hoping for...I just knew...Then the time came...The doctor walked in and delivered the words that we have heard far too many times over the past year...."I don't have good news"...just a prelude to words like "unfortunate" and "inevitable"....punctuated with the final, knock out blow..."I'm sorry"....Well, that's about all it took for me...Then, I had to walk out of here and face the eye lowering again and the other well meant I'm sorrys from parents who are fighting the same battle as me...I can't take it...I left here and went to the apartment to get myself together...As it became late in the night and I was finally alone, I went back over all that the doctor had said...I can't remember most of it but from the best of my understanding Folden is not actually engrafting...The tests show that he has a minimal count which is made up of 1 percent first donor, 1 percent second donor, 7 percent Folden III and 91 percent leukemic cells...The doctors tell me that there is really nothing else that can be done...The bad cells have mutated to the point that chemo and radiation are no longer effective...What do you do??? It has been suggested that we should give Folden another "dose" of his second donor's cells hoping that they will trigger a graft versus host type reaction, similar to what Rebecca (www.caringbridge.org/nc/rebecca) is doing....(However, Rebecca is 98 percent donor)...It is not expected to work for us, maybe prolong the inevitable at best...As I sat outside thinking about everything, I felt the tears flow freely...They have become a part of my make up, just as the freckles across my nose and the scar on my chin...But suddenly, in the quietness of the night, my trickling tears were replaced by sobs and cries...like a little child screaming for help...I kept thinking that Folden is now traveling on his own path...He has embarked on a journey and I can't follow him....He is headed for a place where he will no longer need me to kiss his boo boos or tie his shoes...His favorite,"Rock-a-bye Baby" will be sang by unfamiliar voices...He will no longer search for my finger in the night, comforted by just knowing I am there....He is leaving without me...and I can't stand it...I just can't stand it....I can't imagine that God could be more hurt by leaving him here with us than I will be if takes him away....This is agony......and I don't really know how to continue to exist....Another doctor came in to talk to us...I know they are all hurt as well...They take each of these children's situations very personally and it effects them to watch things like this happen...He said that we gave Folden every chance that we could and we should see that it was a blessing that Folden didn't suffer a great deal...He had mostly good days through the whole process and our greatest blessing was that he didn't even know the dire circumstances....He didn't even know...HE DIDN'T EVEN KNOW!...That keeps ringing through my head...Folden looks at me with trust...He knows that I will protect him...but this I can't explain to him...I can't love him enough to make it go away...I can't save him from it...If I could grab him up and run to some faraway place and protect him from it all, I would have been gone a long time ago...I would leave it all behind, just take my family to another world just so that I could keep us all together...Unfortunately, it doesn't work that way...I have to stay here and see it all through...The doctors hesitate in predicting our time frame...It is somewhere between a couple of weeks and a couple of months...No one can guess at this point...We will know more after the cell bolus takes effect...or not....Right now...They are allowing us to leave on pass each day...We could actually probably be discharged from the hospital and stay at the apartment but we feel that there are some things that he still needs, to keep him comfortable and we can't do that ourselves...We had discussed a quick trip to Disney or a trip to the beach so that he could see the ocean...I realize that all that would be more for my benefit than his...For him, Ampa's truck can take him to lands unchartered and steering the big, big boat on Jordan Lake is far more exciting than any amusement park ride....So this is where we are...Finding adventure in each day....watching him laugh and smile...4-5-6...Find meee-eee!!!!....Making the best of the time at hand...Not knowing what the future brings...Not giving up on the miracle but facing each moment as if it was the last...and he doesn't even know....That hurts the most....Last night, I knew something was up...but at this stage, I never know what....Get this!! BOTH Folden III and Folden IV have line infections...F3's is so serious that they pulled his line today...He will no longer be giving the baby granulocytes....Folden IV is being treated with antibiotics...His is not nearly as serious, (at this point), as F3's....He didn't get to leave the hospital today...Maybe tomorrow....Another doctor came in tonight to make sure he understood our plans for Folden...This is really a dose of reality...We will be signing a DNR in the next few hours..."DO NOT RESUSITATE" will be stamped across Folden's chart...Unbelievable....This is now a cup of my life...and I am having to drink it up...........I want to once again thank you all for the emails and guestbook entries...I don't have the strength to see any of you...but the correspondence has been life saving...It really does help me to continue to hope...So many of you are fighting along with me and holding our hands....It is amazing that you're still there after all this time...I can never thank you enough...You have all helped me to restore my faith in both God and the Human spirit....Love to you all....L.

Friday, July 23, 2004 5:04 PM CDT

DAY 45.....Sorry everyone....No good news today....That's about all I can find the strength to write...I suppose you can guess the rest....More on another day...L.

Friday, July 23, 2004 5:04 PM CDT

DAY 45.....Sorry everyone....No good news today....That's about all I can find the strength to write...I suppose you can guess the rest....More on another day...L.

Thursday, July 22, 2004 9:30 PM CDT

DAY 44....It has been a long day....I can see that everyone around me is deep in thought...wondering what is going to happen tomorrow...I don't think anyone doubts that healing CAN occur...I think its more about WILL it occur and when...and what obstacles will Folden have to face until then....I find it difficult to pray for God's will to be done...I know that I can only handle ONE outcome...I can only manage walking out of 5200 with Folden in tow...healthy and looking forward to a long, happy life...I watch parents as they return to 5200 after life shattering news...or as their child is wheeled out to the PICU facing the inevitable....I wonder how in the world do they stay upright...How do they handle the worst...What could possibly be more devastating....I know that they love their children as much as I love my son....I don't think I could love him more than I do....He is as important to my very existence as the breath that I breathe....as the heartbeat that pulses throughout my body....I love him soooo much and my love grows stronger and more intense each day....I love the way he smiles...they way his mouth moves when he eats...the way he crosses his legs and shakes his foot when he is content....I love the way he holds my face with both hands when he kisses me....I relish in the simple way he says my name....Mommeeeeeee!....I can't imagine a parent having to live without a child that they adore as much as I adore my son....But, unfortunately, it happens....without rhyme or reason...it happens too often...and I know that through all the hell my family has been through, it doesn't scratch the surface compared to what some families endure...I pray for those families often...I pray that God will give them peace....and, at least, moments without overwhelming grief....I pray that they can somehow continue on their journey with enough memories to sustain them....Hold your children tight tonight, my dear friends...You will never know when the last time will happen....Most kids just simply grow up...some never get the opportunity....You know, I can't remember the last time that I rocked Folden peacefully to sleep as he dreamed about the exciting things that he would do the next day.....I can't remember the last time that he enjoyed his favorite food without me measuring it and logging it in....or the last time his toys were left all over the living room floor knowing that tomorrow he would be back to play with them again...I can't even remember the last time that I sang to him just because he wanted me to...not because he was so afraid that a song was his only diversion...The last time that I put my head on my pillow, knowing that all my kids were safe and sound...and healthy...is like a lifetime ago...Sometimes I wonder if it was all a dream...a sweet, beautiful dream....I just want to go home...I want to curl up next to my husband and whisper in his ear how lucky we are to have such amazing children...How happy I am with the life we have created together....As the kids skip around without a care in the world, I want to wonder if it gets any better than this....I believe that Folden is going to be okay with just as much faith as I have when I wake up every morning and expect oxygen to fill my lungs...I know he has to be okay...but I also know the possibilities...what CAN happen...I know what's out there...lurking...I feel like I am facing down the devil himself.....and I am scared....I am worried and I can hardly stand the time that has to pass between now and tomorrow night....waiting and waiting...endlessly waiting....I am not giving up or giving in....There is a lot of fight left in me yet....This is just some of the hardest stuff....and although the outside of me is continuing to function...tears are filling the inside...We have been here too long...Folden, as well as the rest of my family, has missed too much...14 months is a long time to put a life on hold...If Folden's life was not at stake...I could say that the past year has been a time of love and hope and new beginnings....The lessons we have learned....the people we have met...It was a life changing journey...But Folden has had to pay too high of a price for it all....more than any person should have to pay....especially a little fellow....Well, I can always tell when its time for me to go....I am beginning to ramble again...and the tears are beginning to spill over to the outside....Tomorrow is on its way...say a prayer or two...and we will all be right here....expecting the best news possible........and walking on water....Love, L.

Wednesday, July 21, 2004 4:55 PM CDT

DAY 43....The bone marrow aspirate was done today around lunch time....It was basically uneventful....FW pushed Folden and me in the wheel chair over to the clinic...Folden hasn't been off the hall in over 6 weeks...Can you imagine? He did ok until all the Drs. and nurses started milling around outside the holding room....He said' "Mommy, me want go back to my room..."...He did the cry that kills me....His eyes fill full of tears and his little lip pooches out...He is trying so hard to be brave but he is obviously scared....When we were moved over to the procedure room, he started crying a little more...He grabbed my fingers and said, "Sing Rock Baby, Mommy"....It couldn't have effected me anymore if they had pulled my heart out and ran it through a meat grinder....Thankfully, the medicines worked and Folden went peacefully asleep to the tune of Rock-a-bye Baby....This stuff should get easier after all this time, but so far it hasn't....Anytime your children are sad or scared, it is hard to take....Folden felt really good today...I picked him up a few toys and we played until well in the afternoon...GeeRose and the girls came and he seemed happy to see them....We are all waiting for the test results....Friday can't come soon enough....Take care and have a good week....I really look forward to reading the guestbook entries...Thanks for taking the time to enter....Love, L.

Tuesday, July 20, 2004 8:36 PM CDT

DAY 42....Nothing new to report....Tomorrow a bone marrow aspirate is scheduled...The doctors are pushing to get results by Friday...Folden looks good, he feels good and he is a joy to be around...FW said this morning that we finally have our Folden back...I had almost forgotten what his personality was like before steroids...He is witty and inquisitive....He takes my breath away....Everything is fun with him....He is so mischievous...I wish I could film him and include him in my journal so that everyone could know him like we do....He sure keeps us all going..........This afternoon, the girls and I went school shopping...That was fun....They did a little fashion show for me...I like watching them enjoy themselves...Afterwards, we came back to the apartment and started on dinner....We were all starving from the fasting....But we made it through it...I hope that God can see how hard we are all trying to stay dedicated in our journey...I think it was a good experience...Even the girls decided to give up candy today...I am so proud of them...I asked them if they understood why we were doing all this...Wilson said it was to let God know how much we appreciate all our blessings...and to get the devil out of our way....I think she pretty much has it covered...Anna Gaites said she talked to God this morning and she promised him she wasn't going to eat candy all day...Beleive me, for Anna Gaites, that was a huge sacrifice....I am amazed at all the people who joined us....Not only my family, but several people emailed me to let me know that they would be fasting right along with us...What a wonderful feeling!!! What a wonderful day!!!.....God bless all of you....Love, L.

Monday, July 19, 2004 10:08 AM CDT

DAY 41....Soooo, we have been waiting and waiting for the counts to come in....still no counts....Folden is back down to .1 today....The only thing lower is <.1....The blood has been drawn for the tests and we should get some results by Friday...I am sure they will also have to do an aspirate...It may be more than a week before we find out what is going on in his body....Otherwise, he is doing great...I am trying to spend today in meditation and prayer...I think that faith is pretty easy when you watch good things happen...Since Lae came, and Charlie dedicated Folden, I have witnessed so many miracles...I have watched Folden beat alot of the odds and amaze the doctors...Faith is easy on those days...But now here we are, watching his counts bottom out...Mondays are always tough...Folden doesn't get his dad's cells so his counts are truer on Monday...Each Monday, we wait for some spike in counts and thus far...nothing....This morning, I woke up and started trying to find out Folden's WBC...Rose had talked to either Folden III or FW and the report was a disappointing .1....I immediately started thinking the worst..."Oh no...something is not working here"....I went outside and began to think about what was next...what were the possibilities...was Folden going to make it through this...was a third transplant inevitable...I sat outside for a while and just started feeling bad thinking of what could possibly be next....Then it hit me...as a light breeze swept across my face once more...I was reminded of all that has taken place over the last few months...I had let my faith weaken because the doctors and all their tests had not given me the evidence that I needed...I think that our faith is being tested now more than ever...God has given us all the tools we need to get through this, however the devil is trying to throw everything at us that he can to guide us away from God...I know there are people out there who are lukewarm, just like I was...and they are watching my family for proof that God exists and is still in the miracle business....If I walk away defeated, so will others...If I stand up and rebuke evil, strengthen my faith and keep walking towards God, I am sure others will follow....I emailed Lae and she told me it was time to start beating up on the devil....We are going to fast tomorrow...and she also said to find some verses and keep repeating them for strength and to remind God of His promises...So this morning, I spent a lot of time looking for my "Healing Connection" book and I can not find it anywhere...But when I got to the hospital, I found the book that Lae gave me the day that she came to pray for Folden...and after alot of prayer and meditation, this is what I found...as told by Oral Roberts in "Seed-Faith Commentary on the Holy Bible": "One of the most powerful and dramatic examples of how to commit your whole weight on God is found in Matthew 14. Here the story is told of how Peter attempted to walk on water. Now Peter had been raised on water, but he had never walked on it. But during the storm when the disciples were out there in a boat and they were about to lose their lives, Jesus came to them walking on the water. They looked up and saw Jesus out there perfectly balanced on the water. It was like a liquid pavement beaneath His feet. But there they were over there in the boat which was shaking to pieces. It looked like it was going under any minute. Well, it doesn't take a very smart man to know that he ought to get out of a sinking boat and get over there where Jesus is. And Peter said, 'Lord, if it is really You, bid me come to You on the water.' And Jesus said, 'Come...Come on out of that shaking, tossing boat.' That is, 'Come on out here where it's calm, where it's safe.' Peter leaped out and with his eyes on the Lord, his Source, he began to walk on the water. He began to walk above that problem that was about to take his very life. Then in his ear he heard the winds blow and he looked around and saw those huge waves. He no longer was looking at God, his Source, or trusting in Him, and he began to sink. There's another part of that story that is seldom told, and it's absolutely fascinating. Peter bagan to sink and he cried, 'Lord, save me, I perish.' Very short prayer, but if he'd prayed a longer prayer he would have drowned. I know one thing, it's not the long prayer that gets the job done. It's how you are reaching out on the inside. Well, I can just see this old boy as he starts going under. He goes under once and comes back up and he says, 'Jesus.' He goes under the second time and he comes back up and says, 'Jesus, Jesus! I perish! By this time he's not trusting in the waves or in anything else. By this time he has his eyes back on his Source. Each time he came up he saw Christ. He'd put his eyes on Him---Jesus. Jesus reached out His hand and took it, took Peter's hand in His. That's one thing you can feel. You can feel when He doesn't have your hand, and you can feel when He does. There's a big difference when He is reaching out His hand to you and when He's not. Jesus took him by the hand and lifted him up and he stood there beside Jesus. You see, we are like Peter; we are trusting in the wrong things. When Peter got his eyes off Christ and started looking at the waves and the wind, he found they were not trustworthy. And there's nothing and nobody trustworthy on this earth other than God. Because even your best friend may let you down when you have a great need. You think about that. The best job you ever had, you may lose. The business you build up may go under. I mean this is an unstable world, but there is one stabilizing force that never changes--His name is God. I can see them now as Jesus takes Peter by the hand and they go arm in arm, walking back to the boat. Peter did walk on the water but he didn't walk on it by himself. And God never asks you to do anything by yourself. You don't have to feel alone because God is closer to you than your breath. You know, it's all very simple, but I know it isn't Easy. To keep your trust in God, your Source, you've got to keep your eyes on Him...and Him alone. Just as soon as you start looking to someone or something else to meet your need, you'll begin like Peter to sink beneath the problem. And before you know it, the problem will be on top of you. I know because this happens to me all the time. But I also know that just as soon as I get my eyes back on my Source, when I remember who my Source is--God, I begin to climb up out of the problem and get on top of it. Then I can sit back and relax. I can TRUST my Source because I know He has never failed me...and He won't." After reading all that...I decided that I must continue having faith...as the reports come in or the counts come down...just as the waves rose around Peter...I just have to keep my eyes focussed on my Source....Keep praying....L.

Sunday, July 18, 2004 8:15 AM CDT

DAY 40.....Still nothing new....His counts are back down to .2.....I just don't know what is going on...THE test is going to take place tomorrow...I don't think they are going to do an aspirate...just use peripheral blood....Maybe we can find out what is happening...I am sure he is healed, I just want to see some count recovery so that he can leave this place....Rose and FW stayed with him last night so that we could go to the Kenny Chesney concert....Rose said that he went out in the hall and RAN.....He was "going to school".........I hate I missed that....However, the concert was incredible...Uncle Cracker opened...He was wonderful...Then came Rascal Flatts...They were breath taking....I LOVE them....We left about halfway through Kenny Chesney's performance....Folden III hasn't been feeling well the last couple of days...I am a little worried about him....I think his body is trying to tell him to ease up a little...It was a great night in spite of the rain and neither of us feeling like a party....There were a lot of kids there...I look forward to going back with all of mine...I think they will all enjoy it....I know I will...Have a great week and remember Folden tomorrow...We won't get results until probably Friday....Love, L.

Thursday, July 15, 2004 6:43 PM CDT

DAY 37....Ampa says this is the best day since we've been at Duke...Nothing exciting has happened except that Folden feels great...he is eating enough to keep his TPN level down and he seems strong...His WBC is 1.1...We still won't know until at least Tuesday what is going on...He is not on so many oral meds now...So that is good...They make him heave...He says..."Mommy dat make me fo up".....That is about it for today...So let me tell you about yesterday....Yesterday morning, Folden III, Anna Gaites, Alexa, (our niece), and I all went home to check on things...I really went to sort through the girls' closets to get things ready for school....The drive seemed like it took forever and when we finally got home...everything looked so desolate...Folden has really been working hard to get the fences fixed...repair some drainage problems...shape up the lawn...and so on...It all looked great...It is obvious how hard he has worked...I went inside...Just the smell of our house made me want to cry...It is such a familiar smell...something that I don't get to experience here...Everything here smells so sterile...like alcohol...Anyway...I looked around and everything seems okay inside...Its hard to see through all the windows because the spiders and bugs have completely taken over...I don't know why I did it but I went into Folden's room...It is my favorite spot in the house...His walls are powder blue and there is a barn scene painted on one of the walls...He has a real split rail fence and a "tin roof" over his window...All his stuff is done in little cowboys....His train table is there as if waiting for a little boy to power it up...It was such an overwhelming feeling, I just couldn't stand it....All the care and love that was put into making his room into something he would enjoy and he has never even slept in his bed...That just started the somber mood...I went on with my plans to go through the closets...with a heavy heart...My mood just worsened as I looked around...The girls' rooms are so empty and cold....All of their things are just sitting there...waiting....I continued touring the rooms that I haven't seen in a while...On our kitchen table has all the marks that Folden made by banging his spoon...He did it on the first day that it was delivered...The bulletin board is full of dates and invitations that we could never attend...A car seat is at the back door...The tricycle that Folden got for his birthday is right where he rode it last...nearly 5 months ago...The images just kept flooding in...All the things that we all love are just there...Its not about material possessions...Its just our stuff...Things that make us feel comforted...at home...in our own spot....and it is all there and we are all here...Early evening, we decided to head back...Folden asked me what was wrong...He said I seemed down....I guess it was the blank stare out the window or the contant nail biting...(a habit I stopped years ago)...I really couldn't give him an answer....I just missed all of us being at home...I didn't want Folden IV to have to deal with all of this...I couldn't put my finger on the exact source of my mood...I guess it was just a lot of things...I only knew that I had an overwhelming urge to cry....Anna Gaites and I went on to the hospital to visit the baby...We hadn't seen him all day...He was doing great...He seemed happy and uneffected by all the things that he is missing...I looked through his labs and there was a new one in there...I immediately found a doctor for an explanation...Dr. Prasaad was the first one I saw...He said basically that the labs were nothing other than a computer fluke...It was just a description of the first stem cell content...But since I had his attention...I asked him what he thought about Folden's progress...(He never seems as convinced as some of the other doctors...I always feel that he knows more than he is telling me...) He just said that he had been doing all this too long and needed to see more definitive testing before he began celebrating...But nothing that he had seen so far had led him to believe any thing bad was happening...Everything looked good to this point....I felt a little better...A little later, Folden came in...he, the baby and I just sat around and talked...It was nice...You have to have a pass to get on the floor after hours...Folden IV found a few of them and wanted to write the date....(I don't know where he gets all this stuff from)...Anyway...He said, "Date is Duly"....and where the name went, he "wrote", Mommy Lee....He also said his hand was hurting....He said he didn't have a tummy ache, he had a hand ache...I guess you had to be there...but we were all laughing at him and his wit....It sure made me feel alot better....I came back here to the apartment last night and wrote a long, pitiful journal entry and just as I was about to complete the update process, my battery died and I lost the whole thing...I had been writing for nearly an hour and it was all gone...Folden III has this laptop rigged with so much technology it is amazing...but the stupid battery cord has a short in it and he won't replace it...He tells me to wiggle it around and wrap it here and bend it there and it will work...My husband, you gotta love him...Needless to say, that sent me over the edge...(Bill, I think you and I need to host a computer bashing party sometime soon!!!) I just closed the thing down and went to bed...I figured it was all too depressing to share anyway....Today, I have been in a lot better spirits...I guess when I am here, this is the way it is for everyone...When I am at home, I see all that my family is not allowed to do...It gets hard after so many months...It will be better soon....Folden is getting stronger everyday and next week we will finally get the answers we have been waiting for....Thanks for listening to me whine a little...Tomorrow is a new day!!! Have a great Friday....L.

Tuesday, July 13, 2004 4:16 PM CDT

DAY 35....Today is a good day!!! Folden's WBC is at 1.4...Keep in mind that most of that is from Folden III but everyone on the floor is excited because it looks like the cells are finally growing....Folden will be tested next week to see what is going on....Keep praying....

Aspyn and Wilson are at the hospital with GeeRose and Ampa...Folden has been a little less active since yesterday...Seeing new faces, especially Aspyn's, has really perked him up...I think his body is adjusting to the lack of pain meds as well as all the discomfort associated with engraftment...He is still not eating very well...It is all day by day....but he is hanging in there...

Anna Gaites and I are going to cook dinner for everyone...Tomorrow, we plan to go HOME for a few hours and get things in order for school...We only have a few more weeks and the girls will head to 1st and 2nd grade...Where does the time go??? It will be good to see my house again...I just wish Folden could go with us....Maybe next time!!!!

Have a great week....I will check in again tomorrow...Keep the kids at Duke and UNC in your prayers...L.

Monday, July 12, 2004 7:09 PM CDT

DAY 34....Yes, I did update today....but when I went to check the guestbook...the new entry was gone....I guess I didn't say the right things...so I will start again....

Okay...Where to start....Folden 3 is off this week for our annual vacation...He is spending most of his time working on our house...He is trying to get alot of stuff done so that when we do get home, there will not be so much that HAS to be done in order to stay there...Actually, I think it is therapy for him....

Anna Gaites is back...She and Wilson have been good medicine for Folden...and me....We visit Folden during the day, then to the grocery store and then to the pool...I guess its alot like being at the beach....during a tsunami...The other night, all five of us were in Folden's room...My whole family in the same place...That was wonderful....just wonderful....

Dr. Martin came by yesterday...He will be off rotation for the next two weeks...He said that he would see us in clinic....I think that is a very bold statement and he must see something happening...Today, Folden's labs listed several different things that I haven't seen in a while....I am sure that we are in the engraftment phase...They have turned of his PCA pump...(continuous pain meds) and his TPN (nutrition) has been reduced...He is not eating as much as he did last week...I feel like if his appetite doesn't turn around in the next couple of days that they will increase the TPN back to 24 hours...Dr. Martin says that the doctors are "stunned" at how well Folden is doing...He should be having serious organ problems by now, due to the radiation and chemo....He has had nothing other than a minor bladder infection...That is a huge stretch...from serious problems to nothing...Now, how could that be possible???...I felt like Dr. Martin was very positive in everything that he said...It looks like Folden is actually going to BEAT leukemia....against all the odds...

We lost a child on the floor this week...She looked to be about 8 or 10...It all happened very quickly...I didn't know this child or her family...They hadn't been there very long...and I only saw them in the hall a few times...Pray for peace for her family....

I feel like I am leaving something out...I guess I will remember it later and include it in the next update...But for now, everything is going better than everyone expected...We are still ready to get Folden to the apartment...My girls are here with me and I guess it doesn't get much better than that...We are all hanging on...beating the odds...standing firmly on faith...L.

Friday, July 9, 2004 8:17 PM CDT

DAY 31....Today was a good day...Folden is getting stronger everyday and he seems to be taking everything in stride...He is very happy even through all the steroids...His TPN will be reduced tonight so that should help him to feel like eating more....They are starting to turn down his pain meds again...We are having to give him laxatives as his body is getting use to working again....He gets really bad cramps but it doesn't last long...and then he is back to playing...God only knows what that child has been through....It is amazing that he even smiles...much less plays and seems happy 99f the time...Dr. Martin, our primary doctor...our hero....the one who didn't give up on Folden when all the others did....He told FW and Rose that he was off the floor for a while and the next time he saw us would be in clinic....I broke out in cold chills when FW passed that on to me....Dr. Martin will not be back on the floor for two weeks so it seems that he was implying that Folden would be out of the hospital and in clinic within two weeks...I hope he is right...I told FW that I felt like I would have to crawl out of that place...There were so many days that I thought Folden would never feel the warm sunshine on his skin again...taste a drop of rain on his tongue or see a red bird as it bounced from tree to tree....Now there is promise...Folden has beat the odds...Of course, we have a long way to go...We are not even half way yet....but, by the grace of God, we are well on our way....Wilson wants to finish the update for me....Have a great weekend....and a special thanks to all the friends we have made along the way....L.

Today, Folden got sleepy and when he fell asleep Nana was there...He wrapped his fingers around Nana's and went to sleep...Daddy kinda rattled him...and woke him up and said, "Who's number one?"...He said, "Daddy!" and then he went back to sleep....He ate some chicken dumplings, today...He doesn't eat alot anymore....GeeRose and I went to the mall today...We got him a lot of presents...We even got him an alligator that sings, "Come on let's dance"...I love him alot...I love him the same as I do my family and I hope God holds us tight so that we can get passed everything...I love God, too but sometimes he makes me sad...Love, Wilson

Friday, July 9, 2004 8:17 PM CDT

Thursday, July 8, 2004 7:51 PM CDT

DAY 30.......Still no news...Folden had another great day....They have finally decided to turn down the TPN!!! I think it will start tomorrow night...Pray for a good appetite...!!!! We have finally hunted down our mail that has been sent to the apartment address....Thank you to everyone who sent the gifts, cards, stickers, puzzles, pictures, gift certificates......etc....Folden and Wilson had a whole shopping bag of mail to open today....and they had a ball....It was really nice to see how much everyone cares about us...It is overwhelming to say the least....I realized today that I have been living in this apartment longer than I have been living in my house....and Folden has been in his hospital bed longer than he was allowed to stay in his own bed...Sad, isn't it???? 70 more days to go and we'll be at home together for a long, long time....It can't come soon enough....Take care...Oh...I almost forgot...The Baptist Women's Retreat is for the Johnston Baptist Association Members...You either have to be a member of the association or a member of a church that is included in the membership....Attendance to the retreat is by invitation only and invitations will be sent out in a couple of weeks....That information was just forwarded to me...and I am sorry for any confusion....Hopefully, if I do okay at the retreat, I can speak again sometime in a more open forum....I am looking forward to the experience....I don't really know what I'll say to actual faces...But with God's help, I am going to give it all I have....Thanks for listening...L.

Wednesday, July 7, 2004 9:07 PM CDT

DAY 29........Everything is still the same...Nothing new happening....Dr. Martin says we are not out of the woods yet but we are at the edge...Wilson and I have had a great week...swimming, cooking dinner for Ampa and just hanging out...She has certainly earned some undivided attention....She stays close to her mama....We were supposed to get Anna Gaites back tonight...but she has been exposed to a virus and we can't see her until Sunday or Monday....Leukemia can make you do things that you thought you would never do...I have never been this long without seeing one of my children...I miss Anna Gaites so much...I told Wilson her sister would be back next week and how was she going to handle having to share the attention...I said I missed Anna Gaites and I couldn't wait to see her...Wilson ran to the refrigerator and pulled down her picture...She said, "Here Mommy...Now she doesn't have to come back for a while!"...Wilson says its very hard being the oldest...especially when you have a brother AND a sister...That's about it for tonight...I promised Wilson we would get to bed early...She is tired....Sweet dreams Anna Gaites...Mommy misses you so much...L.

Tuesday, July 6, 2004 11:51 AM CDT

DAY 28....Nothing much to report...I still think something is brewing but there are no apparent signs of cell growth...He is eating alot...He is very active and the Polyoma is much, much better...His counts are at <0.1 which is a good indication that he is being sustained mostly by Folden III's granulocytes...He and Wilson are checking each other's ears and nose with some of the medical equipment in our room....He has really enjoyed having Wilson around...and so have I!.....Yesterday, she and I left the hospital and made our usual stop at Build-a-Bear...We went to the grocery store and then to the pool...Afterwards, we cooked dinner together...Everyone ate and we came to visit Folden III and IV before bedtime...She snuggled up close beside me and slept peacefully throughout the night...This morning, we came to the hospital and Folden and Wilson have entertained each other all day....She seems happy and less stressed than I have seen her in a while...Folden looks like we could just unhook him and go on our merry way....His color is good and he is strong...Its amazing that so much is going on inside him....It is not obvious from the outside.........Yesterday, I saw a rainbow...A magnificant arch of color spreading across the sky...Amanda, (one of the kids that lives with us), asked me if seeing that gave me hope....I said no....it is just reassurance that He is still there...keeping His promises...I still have faith that Folden is healed, I don't require hope....and I have all the proof that I need to reassure me...I don't look for signs anymore...I think God took care of all that weeks ago...Now, when my faith weakens,and it does...I just remind myself that we wouldn't have come this far without His help...Why would He leave me now...??? I am reading another book now, sent by another one of my new friends...I read several chapters last night and ran across this paragraph...."As he went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.'"....(John 9:2-3) So many times, bad things happen to us and we think that God is paying us back for something...punishing us...That is just not the case....Most every parent I meet here has the same concerns and guilt...They feel they are being punished for their transgressions...When actually, it is almost the reverse...Another mother of a child in Folden's situation is going to read this, just as I have read countless other journals...I want everyone to know that I have committed many sins...and I continue to disappoint myself on a daily basis...But could I have ever actually done anything to warrant the hell my family has been through over the last year...If God were ransoming my son for my sins it would serve no purpose...What would it accomplish?...How would God be glorified by hurting my son?....I don't understand it all, as you well know...I am learning everyday...That is what is being accomplished...and others are helping me through it....Thanks for listening...Wilson and Folden are trying to change a pan full of water to green by adding green Hawaiian Punch...I want to help....!!! Love, Lori

Saturday, July 3, 2004 8:39 PM CDT

Day 25....1/4 of the way to 100 days...We have been here 4 months today...So much has taken place...So many miracles...It is still hard for me to believe that all this is real...I have a son with leukemia...amazing!...You always think things like this happen to someone else....It just seems like a bad dream and each morning holds hope that I am going to wake up and it will all be over.........Folden is doing great...GeeRose and Ampa stayed with him last night and Folden and Wilson stayed at home...Wilson seems happy...She has been sticking close to Folden for the last couple of days...It seems to be good for her...Anna Gaites is at the beach with Blake and Tammy and their family...She really seems happy, too...but she always does...Folden has been eating more and more and it seems the blood in his diaper is less than yesterday...He has played hard today...He was excited to see Wilson tonight and I am sure they will be up for a while doing whatever he wants to do...Dr. Driscoll came in today...He hasn't seen Folden since the radiation...He acted very impressed with his condition and how strong he is...He was surprised to see him eating...I think everyone is happy with Folden's progress...We are all just looking for cells...Nothing else really changes from day to day...We all just want to get out of the hospital...I have been reading a book that was sent to me by one of my new friends...It is called the "The Healing Connection"...It is basically Bible based directions on how to find healing through the word of God...It is full of beautiful passages from the Bible and stories of healing since the beginning of time....I have really enjoyed it and it has served as a reminder to keep believing...I am supposed to live as if Folden is healed...expecting it on a daily basis...You know that is hard to do...We are always reminded of the statistics and data and so on...Most days, I just have to tune all that out and find a place in my mind where Folden is healthy and playing outside in the sunshine....It is hard to have faith....But I continue to believe everyday...Fortunately, Folden makes it easier...He gets stronger and stronger everyday and he is defying all the odds...I am still amazed that some of his viruses are now mysteriously coming back negative and that he has had no organ problems...That was the biggest concern from the beginning...He is a Superman and thank God for all the people who pray for his continued healing daily......I am speaking at a Baptist Women's Retreat in October...Hopefully, I can do Folden's story justice....I am actually looking forward to telling people in person what has happened to us over the last several months...By then, I will have a wonderful ending to this awesome journey...or rather a new beginning...If anyone is interested in attending, please let me know....Otherwise, have a great Fourth of July and remember what it is that we are celebrating...Pray for the men and women who continue to fight for our freedom and all the privileges we have by just being free Americans...So many people have paid the ultimate price for things that we all take for granted...God Bless each of you and as always, thanks for listening....L.

Friday, July 2, 2004 7:34 PM CDT

DAY 24....24 days in the bag...There have been days that I didn't think we would even get this far...There have been days that no one else thought we would get this far...I am thankful today for Lae and her willingness to visit us...She certainly gave us back our faith and helped us to believe in our miracle...Speaking of her...You know, all those days, weeks, months, that passed by and I just kept asking God to give me something to believe in...Help me to rid my mind of all those doubts...Was He up there...listening...Did He even know that Folden existed...I needed something concrete to hold on to...Looking back, I can see that He answered my prayer in a big way...He sent Lae...I have never been a big believer in Hocus Pocus...magic cure all pills...I have to see to believe...God knew how much I wanted to believe...I just couldn't find anything to hold onto...Lae gave us something to look at and see God through...From there, He has reintroduced the Bible, our pastor and blind faith...A huge void in my heart has been filled...Even when I start to question it all in my mind...my heart takes over...I know that Folden is going to be just fine...He is going to run and play and finally live the life that a little boy should...Today, I told him that when we get out of here, we're going to see Mickey Mouse, chase frogs, go fishing and ride in an airplane...He said, "We fly like Superman..."...Everyone knows that I don't fly...I am terrified of crashing...But I feel like if Folden can face down leukemia, what is a mere airplane ride for me...Folden III is at home...Our real home...Him and Wilson went home to check on things and to work on one of the barns...The kids are looking forward to moving all their animals home whenever we get there to take care of them...The goats had babies and Wilson is thrilled...She finds her peace in taking care of the babies...I am sure one day, she will be a vet...We have had to keep the inside of the house clean...So far, things are looking good...We have a couple of really great ladies that clean it periodically to keep it dust free and ready at anytime for Folden to come home...I have even started thinking about furniture and stuff...We never really finished moving in...I think the cobwebs and junk on the outside can be taken care of later...I have tried not to worry about it...Folden said it still looks like no one lives there...We have had a few instances with some of the neighborhood kids stealing our golf cart and just hanging around...Fortunately, my family has stepped in and started "patrolling"...Hopefully, it will still be there when we get back...If its not, Oh well...........Folden has had a great day....Rose is staying with him tonight....He is eating more and more everyday and the pain associated with the Polyoma is much better...He doesn't even cry when he wets his diaper...There is still a little blood, but it has gone from the size of a quarter to the size of a mini M&M....and even that is breaking up...We have had a good day...He has played and sang...He is VERY demanding, although I think that is more from conditioning than from anything else...He has certainly been allowed to rule the roost...My mom visited tonight...She could really see an improvement...He ate alot for dinner...more tonight than usual....What a blessing to see him put food in his mouth...We are 24 days post transplant...Last time, we came to the apartment after 27 days...This time is certainly taking a lot longer...But obviously, things are going much better than before...Most days, eventhough I hate going to the hospital...I feel blessed by all that has happened...all that I have learned...I have grown so much...I have a long way to go...but I am a much better person today than I was 13 months ago....I hope that I can continue to improve day by day...and take all this that I am carrying with me and use it to make a difference for someone else...Well, I guess that's it for me tonight....Just a bunch of random, unorganized thoughts...My mind is bouncing from place to place...I just want to get Folden out of that hospital...It is coming soon....I just know it...Keep the faith and continue to thank God for our miracle....Thanks for listening...L.

Thursday, July 1, 2004 1:32 PM CDT

DAY 23....What a better day...Folden's pain seems to be bearable for him...He is in good spirits and has had a great day so far...Wilson and Folden III stayed with him last night...After F3's pheresis, he and Wilson went on a date...They are at the movies now and are headed to Build-a-Bear next...Wilson wants some scrubs so she can go to work with him tomorrow...She seems much better herself....She just has to stay busy so that she doesn't dwell on things so much...I am elated to see her smile and interact with all of us on a basically normal level....Keep praying guys...So much is being accomplished through your prayers...I am witnessing it daily and boy, will I have a story to tell when we get out of here....Check out the new pictures...L.

Wednesday, June 30, 2004 7:15 PM CDT

DAY 22....What a day....I think we may have taken a little step backwards with the whole Polyoma thing...Folden said that the baby didn't sleep that well last night...and this morning Ampa and GeeRose we there...They said he was extremely irritable and uncomfortable...Each time he wet his diaper, he passed a blood clot and cried like it was hurting him so much...I got there at lunch, spoke with the doctors and checked on him...He was just as they had described...It was awful...By the time I left tonight, he was in much better shape...His pain meds have been increased a little and he seems to be handling the pain a little better...The clots are thinning and hopefully we are once again headed in the right direction...In spite of it all, he is still eating and I feel like they will reduce the TPN in a day or so...We made him some playdoh hair, read a few books and played with the new toys I picked up last night at ToysRUs...The chaplain visited us...She seems extremely nice and very concerned about all the patients...Personally, I just want to curl up in the fetal position and cry until this is all over...It gets harder and harder to deal with it day after day....I hate to even mention it, but I feel like he is in the beginning stages of engraftment...Lymphocytes and monocytes were included in his labs today...I feel like it is all beginning to take place but I don't want to focus too much on that right now...We need results from a more definitive test which will not come until much later...Right now, we are trying to get passed the Polyoma...and keep him happy and healthy...We are all sick of the hospital....beyond explanation...Its hard for everyone...not just me....Wilson is staying with Folden and the baby tonight...Folden just called and said they were having a wonderful time...Folden IV obviously loves his sisters...He tells them, "Mommy loves me most!!"...His vocabulary is getting better and better...He entertains everyone around...We all still feel very blessed to have this amazing little boy...and to have overcome so many hurdles...We are still in the fight, going for a knockout....We are just ready for it to be over...Thank you all for listening...Continue to pray for Rebecca and Lindy as they face their next challenges...and please pray for Folden's comfort...I know he is healed...I KNOW it...Thank God for another day and Thank God for Folden Lee....L.

Tuesday, June 29, 2004 9:03 PM CDT

DAY 21....Three weeks since transplant...Everything is still about the same with the exception of a couple of minor changes...Folden IV was doing great this morning when I got there and we played until well after lunch...We were able to get him to eat more, so we thought that maybe we could get the TPN (feeding bag)reduced...The doctors agreed and also thought that we could cut out his continuous pain meds as well...So we gave that a try...He drifted off to sleep at about 3:30 but didn't seem to be resting as usual...I wondered if maybe he was experiencing some side effects from the reduction in meds...When he woke up, he was extremely clingy...That is normally a sign of something somewhere causing him discomfort...He didn't cry or anything but was just very grumpy and clingy...Shortly afterwards, he passed a huge blood clot....We quickly restarted his pain meds and within an hour, he was back to his normal, happy self...He has a virus called Polyoma...The docs say it is not terribly serious and can be treated...He will just continue to pass clots and have muscle spasms in his bladder for up to a couple of weeks...So...the pain medicine is back on and we are just going to focus on getting him to eat...One thing at a time...

Today is my 8th anniversary...This is the second year in a row that Folden and I have both forgotten it...Last year, we were knee deep in chemo at UNC and this year we are here...There will be plenty of time for celebrating later...For now, I will just celebrate my anniversary in my mind...Thankful for (almost) everyday that I have been Folden's wife...Thankful for his strengths and weaknesses that make him who he is...Thankful for the family that we have created...Thankful that he loves me...I pray for a long life with him and many more happy days...

FW and I were talking tonight...kinda going over the last 13 months...the good days and the bad days...all that has happened to Folden IV and our family as a result of his disease...We have so much to be grateful for...I'm telling you...things could be so much worse...Folden has so far been spared a lot of bad stuff...and we have so many people to thank for all the support that has helped us to get through each day...I'm not sure that I would ever want to return to my old life...Folden has taught us all so much...about ourselves, each other, life and God...He has been such a blessing to us all...

Thanks for listening...L.

Monday, June 28, 2004 7:48 PM CDT

DAY 20....No cells and that's probably still a good thing...It has been a few days since my last update...Folden III has been hogging the computer...I will try to catch you up on everything...We are at .1 without Folden III's granulocytes...His bottom is well...His organs are still normal...No infections...He is eating a little and fairly consistantly....He is very active and seems to feel okay most of the time....He still gets platelets most every day...The doctors think he is doing better than expected and almost seem surprised that we have not had more complications already...One of the dormant viruses that he tested positive for in the beginning is now mysteriously coming back negative...His only new problem is blood in his urine...It is caused by some sort of infection and from what I can tell, its not of too much concern...very treatable...Folden III is producing granulocyes abundantly enough to sustain both of them and it is still done everyday except Sunday....That's about it, medically....Anna Gaites has been staying with me for the past week...That has been wonderful...She is good medicine for Folden...We get up every morning and head to the hospital...She sits in the bed and plays with him throughout each day...At first, he just sat mesmerized by her...Now, he plays...They make playdoh things, color, read, watch movies and EAT...I think she is the reason he is eating...He doesn't want her to eat his food, so he eats it...If she gets out of the bed, he says, "AnnDaites, where you doing???....Sit wid meeee, peasssssssss...." She loves it...She gets to take care of her brother during the day and her mommy at night...Ampa is still hanging in there...We both agree that the walk to Folden's room gets longer and longer each day...I swear sometimes I'm not going to make it...We've all about had it...but we just keep thinking how much worse things could be...and we keep putting one foot in front of the other....There's not much else to say tonight...Pray for good cells, patience and the continuation of our miracle...L.

Friday, June 25, 2004 9:34 PM CDT

Thank you GOD for day 17!
Today IV is doing great and actually ate some real food. Lori told me he spent alot of time today playing with anna-gaites so I know they both really enjoyed that as well as mom.The one thing that I have learned through this whole experience is the power of prayer and I want to sincerly thank everyone for all the prayers. For anyone who is a non-beleiver just remeber that we were told that IV had only a 10% chance of surviving this transplant and look at him now. Thank you everybody and thank you god. I would like every one to please pray for all the sick children and their families everywhere. Also there are a couple of special requests I would like to make for Nicole and Pam. Nicole is a young lady here who had to leave her 3 children at home to battle her cancer here at Duke. Her sister is a friend of mine from Clayton who has been very supportive through our ordeal with Folden. Pam, is a lady I actually met at my office. She is a very outgoing, attractive woman who is a wellness coach. At a time when her lifelong passion of being a coach was starting to take off she was diagnosed with breast cancer. She has already undergone several painfull surgeries and is getting ready to start chemo treatments. These two ladies could use some prayers to help them face what is about to happen. I know that without my renewed faith and god I couldn't have done it so far. Once again thanks to everyone for everything and god bless.

Folden III

Thursday, June 24, 2004 9:02 PM CDT

DAY 16....Again, there is nothing new...Wilson went to Clayton with GeeRose for a couple of days...The goats are expecting and Wilson wanted to check on them...Anna Gaites is here with me...She wants to spend the day with Folden tomorrow...We hit Target for a few new things to do...The doctors have no news...Everything is still going along better than expected...No organ problems, the mucositus is better, he is active, still not eating other than a bite or two, and no sign of cell growth.....Folden updated the photo album...Those pictures were taken yesterday...Thanks for tuning in and I hope to have more news soon...L.

Wednesday, June 23, 2004 8:43 PM CDT

DAY 15...Things are going along as expected...Nothing new...Wilson and Anna Gaites want to update tonight....

Today, I went to the hospital...Folden was a little bit grumpy...I love him alot...He is a very cute and sweet boy...Summer isn't sweet without him...Everything is special to me when I see his blue eyes...I hope he looks like me and my daddy...I hope he never has to go to the hospital again...This is his second transplant, I hope it works...I bet he grows up to be a builder...He is cute when he says "Me Superman"....I like when he does his Hulk sound...I love him so much that I want to just eat his little head off....He was cute when he put on GeeRose's glasses and looked at the mail...Its fun staying here, five minutes from the hospital..Its little but its the same to me...Its got all my mother's love in it...I follow her footprints in the house...It feels a little bit weird having a brother with cancer...He has had it three times...Diane, GeeRose's friend, got Folden a green bear...His favorite color is green...He says, "geen"...Say a prayer for my little brother, Folden....and that is my story about my brother....Wilson

Today, I went to the hospital and got to see my brother...Jim was there...I got to see my daddy and GeeRose...We played with playdoh....I made a snowman head...Folden is doing really, really, really good...I like to see my brother....I don't like him in the hospital, though...It makes me feel really bad and I can't sleep...I miss my brother alot...I don't like it today....I love staying here with my mom...but I don't like the little apartment...I want to see my brother tomorrow...It makes me feel good when I see my brother...Sometimes it makes me scared and I get really worried...The end...Anna Gaites

Keep praying for our miracle...L.

Tuesday, June 22, 2004 9:36 PM CDT

DAY 14....I don't have much to report on Folden...I didn't see him all day today...Sounds bad, I know...but Wilson and Anna Gaites needed a little mommy time or rather, mommy needed a little Anna Gaites and Wilson time...We left the apartment this morning and I went to have some attention paid to my hair....Then we went HOME! Sounds fun, but it was a mistake...My house looks like something out of a scary movie...Weeds are grown up everywhere...I couldn't see out the windows because of the cobwebs and dead bugs...All my plants were dead...It was awful...It will take another miracle to get that place back to livable before Folden gets home....It made me mad for a moment that all this is happening and I can't be there to warm it up and make it a home....I was so sad that I just left....We decided to get manicures and pedicures instead of grieving over our house...That was so fun....Afterwards, we went to our favorite restaurant...Panchos...and met a couple of friends for dinner...My girls laughed and giggled and I was able to catch up on someone else's life...a great diversion...I can tell that Tammy and Blake are doing a great job with my kids...They seem happy and better able to deal with all the chaos in their lives more so than just a few weeks ago....Tonight, they got a little out of hand but I know it was because they were so tired...They are both piled in my bed giggling and waiting for me to join them...It has really been nice to wake up the past couple of days with them snuggled up close to me...even if this isn't our real home...its priceless....just priceless...I can't explain the feeling I get when I do something as simple as kiss them goodnight or brush their hair...Sounds sappy, I'm sure...Its just that lately, I haven't been able to see them much...Its like watching them through a two way mirror and not being able to touch them...We gotta get out of here soon or we're all going to lose it...FW and Rose report that Folden had a good day...He is a little more grumpier than he has been the past couple of days...That may be a tell tell sign that the cells are beginning to take shape...He has complained more often with his bottom...probably due to the reduction in pain meds...He is eating a tiny bit...also a good sign...His testicle is showing no increase in size...again, a good thing....and that's about it...I am going bright and early tomorrow morning....I can't wait to see him...I'm sure he is going to be a handful...but I still look forward to it...I am going to try and get back before dark so that I can take the girls swimming....I hope you all have a great day...and thanks for tuning in...I am sure there will be a lot to report in the next few days...Love, L.

Monday, June 21, 2004 9:55 PM CDT

DAY 13....Folden is doing really great...His pain meds have been reduced...and he was back at .1 today....Usually, we wouldn't get too excited about a drop in the white count, but for us it is almost too good to be true...Last time at this point, we had cells growing...unfortunately, they were his own...and full of leukemia...Sometimes, when it takes longer...it is a good sign that the new, good cells are trying to thrive and the old, bad cells no longer exist...We can tell by the labs that all Folden has at this point is what he is getting from his dad..but we are all looking forward to the new cells in the next few days...Wilson, Anna Gaites and I have had a great day....We woke up, ate breakfast and headed out to Build-a-Bear...We shopped around for an hour or so and Folden III met them back here at the apartment and they went swimming...I went to see Folden IV...He was in such a good mood...He seems strong and happy...Two of the kids on the floor went home today...Erin and Kendall...I couldn't help but cry...Discharge day is a big deal on 5200...Everyone lines up and down the hall and throws confetti...Parents, patients, nurses...anyone on the unit...It is a huge celebration....I am so happy for them and I look forward to hearing continued good news from both of them as they continue on their journey and get back to the normal activities that they have missed out on through all of this......Folden IV took a nap within a couple of hours after I got there...He fell asleep laughing...I just sat there and stared at him...in awe....He has been through so much...and yet, he is still just a happy little boy...full of spirit and love and laughter...The doctors really had nothing new to say...Just a wait and see thing right now...For us, we're just all holding our breath.......I left shortly after Folden III got back...The girls and I hit about three drive thrus to get everything that everyone wanted for dinner...No one felt like going out...We watched "The Color Purple"...while I braided their hair...Ampa came in after a while..and as always, we recounted the day and the information that we got from all the different sources...We always talk things over at the end of each day...outside in the quietness...He is one of a kind....I have no words to describe what he means to me...He has always been my friend...helped me out when I needed it...pointed me in a different direction when I needed it...He has always been there for me...especially now...Folden IV loves him alot, too...You can tell it by the way he looks at him...With so much trust and assurance...Nothing can touch him while Ampa is around...Ampa moves mountains for Folden and is fiercely protective over him...I'm just glad that Folden hasn't asked for the moon....We are lucky to have FW...and don't worry, I've learned my lesson...I tell him often that he is my hero...I tell him all the time that one day Folden IV and I are going to take care of HIM...I appreciate all the emails and guestbook entries...and I NEVER get too many....Have a great week...Love, L.

Sunday, June 20, 2004 10:22 PM CDT

Day 12...Folden is having a great day...He was even singing some today...He actually ate about a tablespoon of spaghetti...The girls are here tonight...It seems like a million years since I have seen them...It is late and we are all still awake...eating homemade cookies....making milk mustaches and savoring every minute....They wanted to do the update tonight...So here goes...the uncensored version....

(Wilson)

Today I went to see Folden...He was doing really good...I haven't seen him in a long time...He looked different to me...He looks better...I have never seen him that happy since his transplant...He likes to play "king of the mountain"....He is funny when he plays that...I bet he wants everyone to come home soon...I wish everybody would come home soon...I hope he doesn't have to go to the hospital again....I bet he has a lot of friends when he gets in school...It feels like the hospital is everybody's home....When I found out that Folden had to go through this again two times, I felt a funny feeling...I wonder who made him get in the hospital...My summer is great with Folden in my life...I haven't seen him much...I miss everybody because I usually don't see them...It makes me get all my love off my chest when I see my family...because when I get homesick when I'm not at home...I cry....and that is my story....

(Anna Gaites)

Today at the hospital was really fun...I got to play with my brother for a long time...I love my brother so, so, so much....I got to play with my dad...and my daddy has a line in his chest...just like my brother...in just the same spot...I hope my brother gets really, really well so that my family can get back together...It doesn't feel really good to have a brother with cancer...My summer is fun...I get to spend time with Aunt Tammy and go swimming...and tomorrow we're going to Build-a-Bear with mommy and build a frog...I miss Sundae, my dog...I miss my room...It looks like a castle...my daddy built my bed...It is special to me...I like to change my brother's diapers...We like to play hide and seek...My brother always says 123456...find me....I'm 6 years old....I have 1000 stuffed animals...I like to go to Build-a-Bear...I wish my brother could go with me...The end.

I hope you all have a great week..Pray for good news...L.

Saturday, June 19, 2004 7:13 PM CDT

DAY 11....Folden is still doing great...His bottom is much better...It still looks bad but at least it is not causing him too much discomfort...He is still getting his daddy's granulocytes which, I am sure, are helping keep him strong and energetic..He has worked on me and GeeRose all day...placing bandaids, tape and coflex all over our pretend boo boos...He says..."Me Doctor Foldie Lee"...Everyone gets such a kick out of seeing him operate...and he can mimic those nurses perfectly...Uncle Duke came by to see us today...He is FW's cousin, I think...He is very special to us all...Shortly after Folden was discharged from UNC...Uncle Duke had a really bad wreck coming home one night....He was in a hospital in Greenville for a long time and I think at some points, the prognosis was grave...He recovered but was never expected to walk because of the severity of his injuries...Today, he walks around with more strength than I have...He uses a couple of canes but to go from not expected to live to the point he is at is a miracle in itself...It was good to see him today...Just another reminder of the power of family support, good friends and the grace of God...Otherwise today was another uneventful day...Dr. Martin, our primary doctor, came in and looked him over...He thinks the issue with the testicle is caused merely by scar tissue...He said that there is nothing really going on...His labs are all good...which means his organs are tolerating all the medicines very well...and that was his biggest concern with second transplant...Could his organs tolerate being hit so hard in such a short period of time...But so far, his organs have stayed in normal range....We have about 20 more days and we'll be out of the woods with the organ problems...Just one less thing to worry about...Dr. Martin was very impressed with Folden's activity level...He said he wished he could bottle it up and share it with the other kids...I thought, actually you just need to ask my friends to pray...alot has been accomplished by all the prayers that Folden gets daily...Folden's hands and feet are a little pink which could mean that cell growth has begun...We're just in one of those wait and see phases...But we all know the outcome...Its just a matter of time before all the proof comes in....KEEP PRAYING...KEEP PRAYING...KEEP PRAYING...I know God is tired of hearing about Folden Lee...and thanks to all of you who let me know you are there...I have met some really awesome people because of this web site...I hope someday soon, when we have our "Thank God for Folden's Recovery" party...that you can all be there...Keep the faith that it WILL happen...and have a great weekend...L.

Friday, June 18, 2004 7:19 PM CDT

DAY 10!!!! Double Digits!!!! Well, not much new...FW and Rose stayed last night...Amanda, (one of the kids that lives with us...) and I stayed today and Folden III is there tonight..Nana stopped by for a visit...Dr. Kurtzberg and her team and Dr. Martin all came in today and said everything is still in good shape...All his numbers are good...His white count jumped up to 1.0 today...probably because of F3's granulocytes....There are no signs of engraftment yet....He feels really well and is having a great day....Thanks for all your prayers...I can see it working...L.

Thursday, June 17, 2004 11:01 PM CDT

DAY 9....Another good day...Not a lot is different...He is playing and responsive...We have developed a new past time...Drawing on the windows....Our windows are covered with all of our artwork...I know whoever cleans our room when we leave is going to have a lot of nasty stuff to say about us....They did a viral battery test today...Basically, they put saline in his nose and cram a long tube through his nostil and suck out the mucus...They will test it for infection...I'm hoping that nothing comes of it...The last couple of days, I've just noticed a little runny nose and in some cases, that can be very bad....Doesn't hurt to check...The doctors came in today and said everything is still the same...Nothing new...Nothing bad...The girls seem to be doing really well...Aunt Tammy is taking very good care of them and keeping them busy....Anna Gaites spent a couple of days with my cousin and her family...Her daughter is about the same age as Anna Gaites....She loved it...I know it was a nice diversion for her....Tammy and the girls are all at the beach tonight...I miss them so much....But I am so relieved that they are not here in the middle of all this...I guess everything is going pretty good considering the point we are at....Pray for continued comfort and good reports...Superman is hanging in there...L.

Tuesday, June 15, 2004 9:04 PM CDT

DAY 7....Did I mention that I want to go home??? Today was a great day....I have been staying at night with Folden 3 and the baby and pretty much sleeping all day...Well, when F3 is there, I have to sit by the window and watch the Foldens play...I am not allowed to intrude during their boy time....So, I just sit there...and sit there...I can't sleep, there's never anything on tv...I feel useless...I have been going outside alot to find a quiet spot...I've met a couple of the other parents...Patty, who is Kendall's mom (www.caringbridge.org/nc/kendall) and Curtis, who is Erin's dad (www.redrosestationary.com *Erin's Place) and we have become instant friends...I have learned alot from them...Mostly, that everything that I feel is universal when it comes to being the parent of a child with a potentially fatal disease...I understand their jargon...I even know if its a good day or a bad day before they say it...I understand why Curtis wears Barbie sunglasses and drinks pretend tea out of little bitty cups and why Patty cranks up the rap music and dances carefree around the room...I know that they are parents just like you and me who would do anything to make the time spent in that tiny room more bearable....It has been nice to talk to other people who can relate...Please visit their websites if you get a chance...I decided that I needed to go back to spending the days with Folden...I feel much more productive...I got there at about 8 this morning and he was just waking up...We cleaned his room from top to bottom...played with every toy he has, watched tv and basically had a good day...He seems stronger to me today...All his eyelashes and eyebrows are gone...His bottom is still the same and he complains occasionally with back pain...All normal....He took a benedryl induced nap from about 1:30 to a little after 5...Jim, his best buddy, came in to play and around 7 his dad showed up...That was the end of my mommy time....but still a much better day for us both....The doctor came in right before I left and examined him...She thought that things were going better than expected and that we should start seeing cells grow within a week or two...She thinks we may still have some problems with one of his testicles...It could be scar tissue or some residual bad cells...It may need more radiation...it may even need to be removed....That is a little bothersome but I just can't worry about that today...I know we are going to be fine whatever has to be done....He is happy throughout most of the day...Still a little demanding...but overall, I am happy with the point we are at...Did you read Rebecca's website today...Things look good...That is such a relief....I know her family is rejoicing right now...I hope you will continue to remember her in your prayers...as her healing progresses....I feel like I'm rambling again...but things just keep popping in my head that I feel like I just need to get off my mind...and lately I have been thinking a lot about my dad...I miss something about him daily...and I just started thinking about who he was....Some of you knew my daddy...He was a very quiet person...He loved his friends and he loved his family...He didn't really show it outwardly but somehow you just knew....I thought about all the times growing up that I disagreed with his archaic ideals...He was thrifty...I mean extremely thrifty....He was always funny...very mischieveous...He picked on me like a kid...You know, I only kissed my daddy on the lips once...and that was less than a month before he died...We just weren't a touchy kind of family...I did hug him alot after he got sick...and I always told him I loved him...but that was as an adult...I wonder why we were that way..I'm not that way now...I hug and kiss my kids until they just can't stand it....I remember listening to daddy's eulogy....The minister revisited some of the funny things that daddy did while I was growing up...He talked about the kind of person my daddy was...as other people saw him...Suddenly, I realized how much I strive to be like him without even knowing it...He was genuine and caring...always willing to help his neighbor...Sometimes, I hated the way he seemed to walk away from me when I needed him...but now, I see that he only wanted me to be independent...If he did everything for me, then I would always need someone when he wasn't around...He rarely bailed me out of anything...If it was so important...I would figure it out...He had a huge sense of responsibility...but mostly he was conscientious...He didn't overlook what was around him...Now, his ideals don't seem so archaic...I still have different ideals about a few things but honestly, I didn't realize what he had taught me in his own way until it was too late to say thanks...I hope he knew someday I would come around...I know he knew I loved him...He knew he was always my first love, but I wonder if he ever knew how appreciated he was and that I knew how much he had sacrificed for me and my brother...I guess he must have...Folden played a new song by Tim McGraw for me the other day...I haven't been listening to many country songs lately, because some of them are just too much...but this one is called, "Live Like You Were Dying"...and the basic message is so true..."Love deeper, talk sweeter, give forgivness that you've been denying..." I think Folden and I both have come a long way since last year this time...I have always loved Folden...from the very first day I met him...Don't get me wrong...it has been a long road...full of bumps...but I can't imagine going through this with anyone else...I think we stop more often and just love each other and the people around us...I don't want to say goodbye to anyone else who doesn't know exactly how much they are appreciated and loved and how much of a difference they have made in my life...I hope you will try and do the same..Pray for more great days and good news ahead...and as always, thanks for listening...Love, L.

Sunday, June 13, 2004 8:05 PM CDT

DAY 5.....Today was a good day....Folden III and I spent the night...Folden IV slept okay...He wanted to play for a while in the middle of the night...but over all...it wasn't too bad...Today, he had a lot of visitors...Ampa and GeeRose...Nana...his best buddy, Jim...both his sisters, and Aspyn and Alexa...He was happy to see everyone...But he has been glued to his dad most of the day....It was good to see Wilson and Anna Gaites...I think its been almost a week...God I miss them so much...but they seem happy...They had just come back from the beach with Aunt Tammy and Uncle Blake...I WANT TO GO HOME....I want this nightmare over so that I can be there when my kids fall asleep...I want to take them to the pool....put bandaids on their boo boos...be the first person they see when they wake up....I shouldn't complain...Some of the parents up here only see their other children every month or so...some, not until they are released to go home...I just can't help but miss them and everything about my old life...We have been here well over three months....It seems like a lifetime...Folden III is doing well with the pheresis...He gets two shots twice each week...He is pheresed on Mondays and Thursdays...and the baby is tolerating the granulocytes very well...The doctor says everything is looking good...His skin is still looking very bad, but maybe it will all start to turn around soon...Have a great week...Love, L.

Saturday, June 12, 2004 9:28 AM CDT

DAY 4....God is good...We made it through another day....Yesterday was tough to say the least...FW, Rose and I battled Folden all day....I just felt in my heart that something wasn't right....Last night, we had our primary nurse, Cheryl, who knows Folden inside and out...Folden III and I decided to stay with him through the night because we didn't think that only one of us could take it alone for long periods of time...But just as things can turn bad very quickly, they can also turn right back around...With a little help from the nurse, the nighttime doctor and Folden and me...we worked together and I think we have solved at least one of the problems...I am guessing that Folden was just getting too much pain stuff...After we found the right balance, he calmed down...he fell asleep and slept until about 4 this morning...He woke up, fairly tolerable, and played for about an hour and then went back to sleep and slept until about 8 or 8:30 am.....When I left this morning, he was more like himself...Not himself on a good day, but himself on a bad day...I am sure all the radiation, chemo and steroids are a lot for a little guy to take but he is handling it like I would have expected...He is still a little difficult but that is to be expected...What a relief...I knew I couldn't handle him the way he was yesterday for very long...Thank God for getting us through it....His skin is peeling off, I guess because of the radiation...It looks like a really bad sunburn...When the skin sluffs off, it is angry and irratated looking...very red....When he wets his diaper, he cries...but we are back to a very managable point....So keep praying, for Folden and Rebecca and all the kids who are having to deal with their own nightmare....We will get through this....and Folden will be fine....at least we know that all the stuff is working....Love, L.

Friday, June 11, 2004 9:02 PM CDT

DAY 3....Whew...Its funny how things can change so quickly...Folden has been doing great...but since last night at about 5:30 things have been kinda tough...He was sleeping peacefully and when he woke up...it was on....We called in the doctors and the nurses and everyone was trying to make things better...He is suffering from mucusitus which is basically something like mouth ulcers running up and down his entire GI tract...Right now, it is concentrated around his bottom and genitals...The radiation is causing his skin to sluff off which only makes everything on the outside much more "raw"....He is not reacting to the pain as he typically does...He is screaming and "throwing fits" and is basically uncontrollable...So, I think there is more than pain going on...Probably an adverse reaction to so many pain medications...His mood is just making everything so tense...We can usually distract him with games or toys...or even a movie...but not now...The doctors say it will get worse over the next week or so and then hopefully things will turn around....Please continue to pray for Folden's comfort...and please, please don't forget about Rebecca....Thanks for all the stuff that is being sent up here...for us and for the other kids...We are eternally grateful....Love, L.

Thursday, June 10, 2004 3:07 PM CDT

DAY 2....Hello everyone...Its an okay day in transplant land..Folden is VERY active...More, at times, than we can handle...Folden III did his first pheresis today and they are running into Folden IV at this moment....He is resting peacefully, largely due to a heavy dose of benedryl....He still complains with his bottom...Hopefully F3's granulocytes will help heal that some....Say a prayer!!! He is getting out of bed more than usual...Cheryl, our primary nurse, bought him a little bike and he rides it all around the room...Last night, he was running around playing hide and seek and DANCING! We have all enjoyed his energy...It is so refreshing and uplifting...Thanks for your prayers...They are carrying him through each day...

I need another favor from all of you....My friend, Rebecca is going Tuesday for her 2nd aspirate...The first one showed a few questionable cells...We need to pray for her complete healing and that the test results are perfect...She is a wonderful child...She just finished her 100 days post transplant...We met at UNC...Click on her link below to catch up...Her family is a living testament of faith and an incredible example of endurance...They have sure been an inspiration during my own familiy's journey...Please send them positive thoughts, prayers and maybe even a few words in her guestbook....This is a family that you would love knowing....

Everybody have a GREAT day...It was a little easier putting my shoes on today...Folden is doing really well....Thanks for all the emails and entries....I love you all! L.

Wednesday, June 9, 2004 2:46 PM CDT

DAY 1.....Folden is strong..He is active and he is eating a little...He is complaining with pain now and then...probably the beginning of mucuscitis....common after chemotherapy...His pain medicine has been increased and hopefully that will keep the pain at bay for now...

I have had so much on my mind lately...I think all this has forced me to get to know myself....face myself head on...I have had to see myself for what I really am...who I really am...When Charlie was here for the transplant, we talked a little about honesty...Being honest with each other, ourselves and most importantly, God....I have read different journals written by other parents of children with cancer....I have received emails from other parents around the country who have been in my situation...The thing that impresses me most is their honesty...Some have even told me how they have wanted to give up...even wished that the end would come so that the nightmare would finally be over...That is honesty....I think, at some point in our lives, we have to face ourselves...our demons...our frailties...I know that somewhere down the line, another mother of a sick child is going to read at least some of my journal....I don't want anyone to compare themself to how they THINK I am handling all this...When the smoke clears...its just me here...a normal mom...a normal person...I find it hard most days to produce the strength to just put my shoes on...I feel helpless and useless...I try to stay positive and focus on the horizon...it doesn't always work...I have a terrible time performing normal daily activities...It requires more effort than I can muster just to put one foot in front of the other to make one step in the direction of this hospital...I feel like we are all in a tiny glass room and the world is going on around us...We can only watch...uninvited...That's where the guilt comes in...I want to be somewhere else...doing anything else...It feels like an angry mob is ravaging my insides...leaving just a shell to carry on...The good days we talk about are just days that aren't as bad as one that has passed...I wonder at times how much longer we can keep this up...and I am not measuring in days or even hours...merely minutes...seconds...This is honesty...Life is just going through the motions...I have faced a lot in my life...Worked several jobs just to pay the rent...Faced losing my brother and my father...I have been through severed relationships with friends that I will probably never get over...I have been rejected by people that I thought I loved...I think, for the most part, I have done most things the hard way...and I am still here....I thought I was pretty tough...But this requires more than strength and determination.... something that my own will can not manage...I find myself outside alot...Looking for a moment of peace...What I find is a gentle breeze sweeping across my face as if quietly whispering...I am here...I am here...I know that there is not enough goodness in me to keep me coming back here on my own accord....Something keeps me going that is beyond my comprehension...It is God, it is all God...and an amazing child...a little boy named Folden...Love, L.

Tuesday, June 8, 2004 12:54 AM CDT

DAY 0! Finally counting in the positive....Today went great...They hung the new cells at around noon...Our primary nurse, Cheryl was here along with Ampa and GeeRose...Uncle Blake...Me and Folden III...His Best Buddy, Jim, Charlie Carroll...and our nurse for today...Michelle...Charlie prayed as the cells were transfused into his body...Grow Cells Grow!!!! I feel good about the whole thing....A fresh start....

Folden III is doing great...He says his neck is VERY sore from the line placement...He says, almost through tears, that he can't imagine all that the baby has been through...Folden IV's line is in his chest, but he also has one running through his groin and out his stomach area.....If F3's is sensitive, can you imagine what F4 has to be dealing with...and he has had 6 in the past year!

Okay...I did the TV thing...However, it wasn't on WRAL, it was on WTVD...and I am sorry for the confusion...Don Ross was great and I think, all in all, it was presented very well...It was important to us that the message did not invoke sympathy...and I think he did a good job at letting everyone know how well Folden is doing rather than focussing on the odds.....I was very proud of my little superman...

That's about it for today...I have so much going on in my head but I can't seem to get it orgainized enough to write it down so I will save it for another day...Today, I am just thankful for all my friends and family...and especially for our new start....I pray that God will keep Folden in his care as we wait for the new cells to grow and thrive....Love, L.

Saturday, June 5, 2004 8:18 PM CDT

Hello Everyone...Today was a good day...Folden feels great and he is even beginning to look a lot better....Folden and I went to the Relay for Life at JCC last night....WOW! Andrews' team did an excellent job with their display...Several of the kids from Duke were pictured around a sandbox...I realize the rain reduced the turn out but there were still so many people around...I was impressed by the number of teenagers and children that were being included...What a wonderful thing to teach your kids...Folden and I walked all the way around the pond and looked at each of the luminaries...So many people have been affected by cancer in one way or another...For a moment, it made me sad to see so many bags...Then again, I thought about the hope that each one holds...There is one thing that was obviously not present...Pity! Everyone there was working for a common purpose...No place for sympathy around there....It was wonderful to see some of you...I can put a face with the names now...

I ended up staying at the apartment last night with Wilson and Anna Gaites...Wilson and I went to the mall today and Anna Gaites went with her father to "tinker" on the boat....It was a good day....I stayed with Folden this afternoon...He started his chemo today...He didn't seem too bothered by it...One more day of meds and then we start using drugs to make him feel better...The doctor said that just a week or so ago, he would guess that Folden was carrying 2-3 pounds of leukemia cells...He was very, very, sick...They are all amazed at how much better he is...Are there any non-believers left out there anywhere?????

Dr. Allen stopped by for a visit today...It was good to see him...He is almost like a kid in a mischievous kind of way...He makes me laugh...He is the doctor from UNC that actually diagnosed Folden...I still remember him walking into that little room where Folden and I waited for the verdict...He said..."I don't have good news.." That's when my world stopped...I will never be the same again...

Monday, Don Ross from WRAL has requested an interview...I never look forward to that stuff...Guess I'll have to find my make-up and curling iron...

Also on Monday...Folden 3 is having a central line put in just like Folden 4's....As time goes by, F4 will need granulocytes and F3 was the best candidate out of all of us...I am a little disappointed that it wasn't me, but I am happy for F3...He can actually see what he is doing to help Folden 4 get better....

Well, that's about it for tonight....Thanks for listening...Love, L.

Thursday, June 3, 2004 1:15 PM CDT

Hello Everyone...Its me again....Just a quick update...Anna Gaites is still hanging in there...She's being a champ...I just left the hospital and Folden is with GeeRose and Ampa and is probably right now in radiation...He is doing really well, too....Ampa got there early this morning and found Folden laughing in his sleep...Thank you for your prayers...It has been a long time since I have seen him do anything but whine or cry in his sleep...He went through the morning radiation very well...When we got back to the room he wanted mac 'n cheese....I taught him how to slurp the noodles and we had to eat the whole bowl...one noodle at a time...Laughing with each slurp...The cheese stuff was everywhere...up his nose...down his chin...but God it was so much fun to watch him laugh and slurp...He feels great...I said.."Foldie Lee, you are a mess"...He said, "No me no mess...You mess mommy"....Then Ampa came in and Folden announced with his fat little finger pointed..."Ampa mess"...I will have to agree...Thank God for another bearable day...2 more radiation treatments....and we are finished with that...!!!! Thank you all so much for your prayers and your entries...We are all doing well today because superman is doing well...Have a wonderful day!!! Love, L.

Wednesday, June 2, 2004 8:05 PM CDT

Hello again....Anna Gaites made it through her surgery better than expected and is enjoying the attention from all of us...She is also an awesome kid...She was so brave through it all and our only battle comes from her having to take medicine...She lets me know very quickly that she is in charge here....Thank God that this is another thing that we can put behind us...She has needed this surgery for almost a year now but her ENT felt that her recovery would require more than I was able to give with having to stay so close to Folden and his needs...It just got to a point that we could wait no longer...I am so thankful that it is over...Folden had a great day...It seems our prayers for his comfort are being answered...He is once again eating...When I got there this morning, he was sitting up, bright eyed and glad to see me...We are now over half way finished with the total body radiation...They even treated his eyes, just in case....He started CAMPATH today which should knock out his immune system...This helps in preventing his body from rejecting the new cells...He had a reaction to it which scared us all a little..His body started shaking all over and he said he was cold...It resembled the episode at UNC when he went into shock because of infection in his lines...But he quickly recovered and the doctors all thought he had taken it very well...We will continue CAMPATH for 4 more days...The transplant is still scheduled for Tuesday...All I know about the donor is that it is a girl and her umbilical cord blood was stored in the bank located at Duke...That would lead me to believe that she is local...Probably someone that one of you may even know...Such a small deed for her parents with effects that will change our life....Sometimes I wonder if we all understand what an impact our actions have on others...Good and bad....I was up late last night...Sleep doesn't come very easily anymore...I just didn't feel like updating because it requires a lot of thought for me...So I just read the entries and emails and ran across an entry from a distant cousin that I haven't heard from in many years...I was immediately taken back to high school...He lived right down the street from me and always offered me a ride to school or to the ball games or whatever...He was the closest thing to a big brother that I ever had...I loved him dearly...He always watched out for me and to me, he was bigger than life...My mom would let me do things or go places if he was around because she knew he would keep me out of trouble...He graduated and went off to college...He invited me down a few times and thinking back, I must have been in his way alot but it never seemed to show...He always included me whenever the circumstances allowed it...After college, he got married and moved out of state...I graduated and moved on myself and somehow we lost touch...I kept up with him through our mothers...I know that he battled cancer as a young adult and beat it...It was so good to see his name listed in the guestbook...He will always be very special to me...Then I thought again about how we cross people's paths and one way or another, we change something...I hope that somewhere along the way, I can make a difference...I can use these circumstances to change something...even make it better for someone else...I hope I never, ever forget the feeling that I have, being on 5200...I hope I never forget the faces that I have seen and the spirit that carries everyone there throughout each day...Those kids are fighters...Their families are fighters too......I am humbled by all of you and the immense difference you make in my day...just another thing that I never want to forget...I hope that, even in the little things, I can make things right...Give back what has been given to me...I want to make sure somewhere along the way, someone else can benefit from my journey...My prayer for today is for Folden's continued comfort, for God's healing hand to touch all the children who are fighting so hard to live and that I use my resources, whether it be time, money or effort, in a way that is pleasing to God...I can not thank you all enough for your entries and emails...You definitely have made a difference in my family's journey...I hope to see you all this weekend at the Johnston County Relay for Life.... Love, L.

Monday, May 31, 2004 8:51 PM CDT

What a day....So much stress...So many silver linings...We started out with day 1 of the last week of radiation treatments...Thank God! The doctors seem cautiously excited about how everything is going...His bottom looks close to normal and he has not complained with it in a while...His eyes are glazed, assumably from all the pain meds...He obviously feels terrible but I understand he perked up a little after I left tonight...He even ate some pickles...That has made me feel so much better...Today was one of those days that I have to really work hard at not falling apart...He was almost lifeless...Very clingy...I wasn't that impressed with the anesthesiologists today...I think sometimes they forget that they are treating MY son...Not number blah, blah, blah...My son! They forget that there is a story behind each person...I am sure they didn't mean to upset me...but they did....He had to wait too long with that hot mask on and they put him to sleep too quickly...He almost threw up....If you have ever had a terrible stomach virus and unbearable heartburn...you may have an idea of how I think he feels...All effects of the radiation...(I find out a lot of info from some of the adult patients that I meet around the hospital about the way they feel after similar treatments.) Anyway...When we got back to our room...the 5th floor nurses had decorated Folden's room with a cute truck border, a superman poster over his bed and matching pillows...They even placed a little night light in his room....It was breathtaking...I was close to tears...I love those guys so much...They will never know what that meant to all of us...and I am sure that I will never be able to tell them...You would have to know them but they are beyond amazing...All of them...So full of love and compassion for the kids and their families...You can tell Folden and the other kids are not numbers up there...God bless those guys for what they do and especially for how they do it...After all that excitement was over...we had a special visit...It seems Santa is keeping up with Folden through the web page...He emailed me to see if a visit might would cheer Folden a little...I thought, of course it would and all the other kids, too!...." Santa is a beautiful man with an icy white beard and sparkling eyes...He wasn't dressed in his red Christmas suit and he certainly didn't need it..His spirit radiated through each room...He is wonderful inside and out....His voice was so full of love and kindness...I was amazed at his charm....One of the Clayton churches and Walmart donated a truckload of toys to the kids on 5200 and Folden III had those there for Santa to distribute...What a huge surprise for all the kids...Santa was awesome...I think today he could have brought coal and he couldn't have been more welcomed....Leave extra milk and cookies this year...I can tell you, he earned it today...After all that, I came back to the apartment to see Wilson and Anna Gaites...I haven't seen them since Friday...They went to the beach with Blake and Tammy....I am so happy for them...They needed to get out of all this for a bit...When I saw them, I just hugged them all over....Anna Gaites is getting her tonsils out tomorrow and I am staying with her here at the apartment tonight...We went to the grocery store to get her icecream and jello for after surgery...Guys, I know it doesn't seem like much...But the feeling I had, being able to push that beautiful child around the grocery store in a shopping cart was almost more than I could stand...I felt normal for one second...I love her so much....To see her have her mommy all to herself and to see how happy it made her almost took me under....What a blessing that was...I don't take it lightly...Something that simple is worth the world to me....Well, I guess I've rambled on enough....Thanks to each of you who continue to check on us...You are all priceless, too...Love, L.

Sunday, May 30, 2004 6:14 PM CDT

Hello Everyone...Folden is doing a little better today...They have reduced the decadron which has helped his grumpy temperment....He is sleeping alot and complains occasionally with a headache...I think the headache is just a side effect of the radiation....I hope that he will soon feel better....I hate seeing him uncomfortable when there is nothing that I can do....Anna Gaites will get her tonsils out on Tuesday...I wonder sometimes what could possibly be next....I am sure I don't want to know the answer...Thanks for all your emails...Knowing that so much is going on in your own families is such a source of strength....I can only hope that you continue to live every precious moment and continue to make a difference in any life that you can....There are still so many families up here that need your resources...I think there are only a couple of kids here that were here when we left before...It is sad that there are enough sick children to fill this unit, over and over again...I think sometimes about these nurses and what they are faced with day after day...I see them form relationships with the children eventhough they are advised against it...I wake up sometimes in the middle of the night and see our nurse looking at Folden from head to toe...Memorizing each bruise, each breath, each heartbeat...They know him so well that sometimes they pick up on changes that even I miss...He has been taken care of here with more love than I know is healthy...I was so against leaving UNC because of the friends that I had made there and the security that I felt during each stay...I felt sure that no one else on Earth could ever live up to their standards...They are all angels....I have found that those same angels reside here as well...I thank God for the nurses and the time that they have spent with Folden and the rest of my family...I know this journey could have been so much worse...So many people have carried me through ...I hear from old friends who I have not seen in years...Neighbors of neighbors...People who I have no idea how they were even connected with me...I have had the opportunity to take a second look at my friends and family and I see so much more than I have ever seen before...My friends, who would stop their own lives, just to make mine a little easier even if only for one second...My family....My mom has been through so much in her own life and yet she is still right beside me fighting....I can see the pain in her eyes as she watches me hurt so deeply...She is a mother in the truest sense of the word...Folden's family has been so amazing...Both his mom and dad have been like warriors....FW has not missed one single day being here with us...I am not sure if he has even been home more than once or twice since our admission to Duke back in March....Folden's brother and his wife...Blake and Tammy have stepped in to help ensure our kids have a decent summer rather than spending it at the hospital with me....I have so much to be thankful for...I never knew I would need these people so much...I have a new appreciation for those around me...Friends, relatives, everyone that I come in contact with....I want to strive to be the best person I can be...the best friend, mom, wife, daughter, daughter-in-law, passer by....whatever part that I play at that moment...I thank God for giving us hope today and a support system that we completely count on...I love you all, L.

Saturday, May 29, 2004 7:54 PM CDT

Hello Everyone...Not much to report today...Imagine a 2 year old on steroids and you can pretty much guess the rest. Folden feels okay, considering...He is active and playing...He hasn't eaten much...and he is VERY grumpy...He has finished two of the three stages of radiation and seems to be responding very well...He starts the third part on Monday. The transplant is still scheduled for next week...As I sit here and watch him...I am thinking about the conversation with the doctors two weeks ago...Man, what a day that was...They told me that Folden would probably be dead within two weeks...That is now...I think about where I could be sitting right now...What I could be feeling...But thankfully, by the grace of God, he is still here.... fighting.....Fortunately, the story continues...Have a great holiday weekend and please say a few special prayers for Folden next week...All the treatment has really been hard on him...His pain medicine has been increased and he obviously doesn't feel the best....I realize it could be worse.....Just pray for his continued comfort....This next radiation is full body...It should zap everything left...I am sure it is going to get a whole lot worse before it starts to get better and I just don't want him to have to suffer through it...Please pray for his comfort and for continued faith for his family as we watch our miracle unfold....Love, L.

(I have updated the address...Please feel free to send us mail...We all enjoy hearing from you...)

Thursday, May 27, 2004 9:58 AM CDT

Hello Everyone....Well...We made it through school...I am so glad that it is over for now, but I will miss everyone this summer...The girls have had a blast the past couple of weeks as we have really been able to enjoy doing normal things...It seemed good to get to participate in all of the end of the year activities...Yesterday, after Wilson's school picnic, I brought home a few of the kids to play for the afternoon...A few of my friends also came over with their kids.....It was wonderful to see muddy feet run through my house...12 little kids excited about catching a frog...As I looked around...My heart ached for all they have missed in the last year...Folden was diagnosed one year ago tomorrow...What a year it has been....I have really began to look at things around me and reevaluate what I am really seeing....So often, I find myself at the toy store or Limited, Too loading my cart down with things that I know my kids will enjoy...A couple of weeks ago, I attended the fabulous Mother's Day Celebration in Anna Gaites' class...Each child was asked to stand beside his mother and tell the class what makes his mother special...I heard "my mother is special because..." over and over as each child announced the quality that his mother possessed that made her so outstanding...Not one said he loved his mother because of anything that she bought....I thought, WOW! One little boy said his mother took him fishing...another's mother was special because she read him stories....another said with a shaky voice and teary eyes that his mother was just special...no explanation needed...Folden and I talk alot about our lives growing up and the various challenges that you face as a child...He had a lot of things growing up...But his favorite memory is a day that he and his dad rode horses...He talks about all the times that his mom would take him, his brother and a few friends to Hardees for breakfast before school...Nothing that cost anything but a little love...I think one of my favorite days as child was when my daddy and I flew a kite in the garden...or maybe the day he taught me to drive my papa's truck...We took that old truck out into the country....I can't believe I didn't strip the gears but it was so fun...We thought we had run out of gas...and we laughed until we were silly because my daddy wanted me to ask one of the neighborhood kids for gas...I refused because at 13, you didn't ask a 16 year old boy for gas because your old truck was stalled beside the road...That was so not cool....When I figured out that daddy was just teasing me and the truck cranked right up...I thought I was going to kill him...He always knew how to get to me...We laughed histerically all the way home...and I drove! Yesterday, one of the kids said...."Mrs. Lori...There is some yukky red popsicle stuff running down the stairs.." Yeah..I thought...Isn't it great! As I spend the day packing up yet once again...I am so sad that I have to leave...I love it back here deep in the woods...My own piece of heaven...Not just because our house is here....But there are so many memories here waiting to be made....So many frogs to catch....Puppy slobber and lady bugs....So many summers to run barefooted through the freshly cut grass...I thank God for healing Folden and allowing me to once again feel his presence....I just can't wait until I can bring my family home to enjoy the important stuff......L.

Tuesday, May 25, 2004 8:49 PM CDT

Hello Everyone....I just wanted to let you know all that is going on in transplant land....I visited Folden this afternoon and happened to be there when the doctors made rounds....They did a chest xray because his breathing is a little labored at times but they feel that is coming from having to be put to sleep everyday for the radiation treatments....He has finished the radiation on his testicles which have responded very well...They are not as swollen and do not seem to bother him very much...He continues to have fevers....he has no appetite and he throws up alot...All are symptoms of the radiation...The fevers, I think are probably also associated with the leukemia cells dying...When they die, they are basically poison and his body responds to it with fever....His eye has been really red for about a week and the doctors really checked that out but it appears that it is simply a broken blood vessel that is leaking due to low platelets...Otherwise, his counts look good for this stage in the game...His blasts are down to 3 or lower and his white blood count is hanging around .8 and .9...That is really good considering the blasts were getting out of control just a week or so ago...Thank God for healing Folden and for helping him to remain comfortable...He was really tired when I saw him but was still going strong...Apees was going to spend the night with him and GeeRose...His father is getting some much needed rest and mommy is just hanging out with the girls enjoying the last few days of school and all the activities...Thanks for all your prayers...Please continue to believe in Folden's miracle and pray that as the days draw closer to transplant that Folden's organs will continue to stay in normal ranges to better tolerate all the medicines that will be pumped into him...I am grateful beyond belief for all the emails and journal entries....I will post his new address by the weekend...He was moved to a bigger room today...Right beside our first room...We have T's room for those who remember his story...I am sure his angel is among those that are watching out for Folden...God bless all of you...Love, Lori

Monday, May 24, 2004 12:54 AM CDT

Surely you can see that there has been a spiritual explosion around my son....We are all standing in shock at all that has taken place since Folden's angel brought healing to his body....I can't tell you all of the episodes and events that we have viewed as signs of God's presence because of the limitations of my forum and I'm afraid words wouldn't do it justice...You just had to be there...But I will share this one with you....And I promise you that this is the truth exactly the way it happened without any embellishments...

Saturday night I spent the night with Folden IV...He took a late nap and woke up at about 10pm....We played until about 1am...Throughout that time, I caught up on my email...talked with a few friends and tried really hard to update the journal...We played and giggled and read a few books...Different things that he enjoyed...About 1am, he reached for my finger, rolled over and fell asleep...I was excited that he hadn't stayed up too late because I was really tired and the only time I can sleep soundly is when I am there beside him...So I snuggled right up and waited for sleep to come...But it didn't...So many things were reeling through my mind...I just had a lot of nervous energy and could not sleep....Of all the nights that I have spent with Folden in the hospital over the last year...I have NEVER left him in the room alone...Never....But something was just keeping me from settling down...I looked out the window and the thunderstorm was passing so I thought I would walk outside and watch the storm and maybe relax enough to sleep...So I asked one of the nurses to turn on the monitors and off I went...outside...in Durham...in a thunderstorm...at 2am....on a Saturday night...with my sick baby laying by himself in a hospital bed...What if he pulled a line or threw up?...What if he simply had a bad dream and needed mommy's finger to soothe him back to sleep?...But I just kept walking...Down the hall...5 floors in the elevator...through the lobby passed all the security guards and out the front door....I walked over to a concrete bench and sat down...I marveled at the beautiful sky...Lightning sparkled across the horizon....The smell of rain was wonderful...Everything was still and quiet....I thought alot about how I had often dismissed God and kept Him somewhere in the back of my mind....so far back at times I wondered if I even actually believed....I thought about all the times that He was there beside me but I ignored Him and continued on using my own strength....I thought about all the wonders in the world, big and small that let's us know that God is present...and we overlook them daily....So many things crowded my mind...Its like it all became clear...My heart was full of God's love...He had just been waiting for things to get bad enough that I would have no other way to turn but to Him...and that's what I did...In the quiet of the night, I looked through the thunderstorm and said...."God, thank you for healing my son....and thank you for not turning your back on me...." About that time, I felt a few drops on my arms...But I didn't feel like my visit was over, so I looked around and saw a few men sitting on the benches under the overhang....and I also saw one of the hospital workers sitting in a wheel chair near the door...As he got up, I moved quickly to stake my claim on the dry seat....I began my pondering once again but something was wrong...I slowly turned my head and looked down and right beside me lay a man, asleep with a brown bag held securely in his clutches...I thought...Ok...If I move...It may make him mad...If I don't, there could be problems...Folden had already warned my about interacting with people on the streets in Durham...But I sat there....All of a sudden...His eyes popped open and although I could only see the whites of his eyes through the darkness...I knew that there was a really big man there....In the quietness he whispered..."I missed you...." He looked at me in desparation...As if saying..."Did you hear me...I can't say it again...Please tell me you heard me....".....I didn't move, I didn't speak...Nothing came to mind...I just sat there....and he once again drifted off to sleep....As if nothing miraculous had just taken place....Later in the weekend, I found the courage to tell FW and Rose about it....As I was describing the night to them, Wilson was in the background working really hard on something...She had not heard the story yet but still paid me no attention...When I finished, she handed me a piece of paper that she had copied from something someone had left in the room...And although I can't recall the exact wording, It basically said that God doesn't always reveal Himself in all His glory...Sometimes it is in the lowliest of creatures...I thanked her and thought...I believe...I believe...I believe....So since then, I have begun to read some, trying to catch up on all I have missed in the last few years....And I ran across a couple of verses that really applied to all that I have already learned in the last couple of days...(I hate to admit it, but there have been times that I couldn't tell the difference between a Bible verse and a line from the Declaration of Independence...) I thought about what the lady told me to do after she prayed for Folden....She said to tell everyone what was happening so that it would help people to know that God is real and that through Him, Folden would be healed...."Now I want you to tell these same things to followers who can be trusted to tell others"...2 Timothy 2:2....You know...If I could make Folden well, it wouldn't be a miracle...So, I have to step aside and let God work...and my job is to keep Folden comfortable and to share this story with all of you....Maybe Folden's miracle can help you to rededicate your life to God or to help people like me who have been on the fence for quite some time....Then I found, "I am with you; that is all you need. My power shows up best in weak people"..2 Corinthians 12:9...And believe me people, He picked a winner here....If you were to see Billy Graham's son be healed...You would think..."Oh that Mr. Graham is a great man...God loves him very much and has saved his son..." But through me...a very spiritually weak person....A miracle in my son's life is nothing short of that..a miracle...I have tried bartering with God..."I'll do this if you will let Folden live"...But it doesn't work that way....One of my aunts told me when Daddy was sick to be still and let God move....I thought, nothing's going to get done if I don't get busy....and off I went...I am so thankful for all that is going on around me...and I thank all of you for the emails and journal entries...I read every word that you write and I take it all to heart....Thanks for listening and if you need me, I'm going to be standing right here in this spot....L.

Saturday, May 22, 2004 8:17 PM CDT

FOLDEN IS HEALED...It is promised...It is done...Believe it.

This entry may be a long one...But bare with me...It is the most important one by far....One day last week a lady made an appointment to see Folden III for a routine dental examine..On her scheduled day, F3 was running behind and usually he would move his new patients so that they could get optimal care without being rushed...He didn't do that for whatever reason...So the lady shows up, sits in the chair for her exam and F3 finds that she only needs a cleaning....and maybe some other minor things....She pays her bill and leaves...Very uneventful...A little while later, F3 is left a message to call her...and he does, wondering what she could possibly need him for....After she said hello, she asked him who the little boy was in the picture in his office...He said, "That's my son, Folden IV..." She said, "He is very sick, what is wrong with him?"....F3 answers, "Leukemia" and she immediately says she has to see him to put her hands on him....He said, "I'll be right there to pick you up!"...but she said she had a lot going on this week...she would see us on Sunday after church...(She is an associate pastor at a church in Garner, I think)..He said good-bye and hung up....Not long afterwards she called back and asked to speak with him again...She said, "I can't wait until Sunday...Your son is very sick and I must see him sooner...I have to touch him"...So Friday evening we all piled in this room and waited for this person to show up...Not knowing what to expect, we all sat around looking forward to what was about to happen...full of doubt...She and a friend named Lisa walked in...She was and African-American women dressed from head to toe in pretty bright green....She had eyes so dark, I could not see her pupils...She leaned over Folden's bed and began to speak to him...He never once broke her stare...She told us that Folden 4 can still see his angels around him...They are all fighting for him...She talked to us a little and eventhough, I was listening intently...I don't remember alot of what she said...but I remember the feeling...She then rubbed oil on each of our right hands...She asked us all to join hands and pray and we did....I was between her hand and Folden 4's and I swear I could feel their hearts beating in sync through their palms...It was amazing...No one spoke, only listened...So many things happened that made this unique to Folden...So many little signs that it was okay to believe...After she talked to Folden a little while longer...She told us about how God worked through her to heal...She said after going to F3's office, (not needing any dental work), she wondered why she was even there...And afterwards, she felt full of heat....She knew God was working through her and that she needed to see Folden...The lady with her didn't even know her...She just offered her a ride....

Anyway...She told me that Folden was healed...That I must give him to God and realize that he is not mine...Just mine to take care of....She said I have to tell everyone about what took place so that through this experience others could know God and his power....

So Folden and I had a very special minister come to the hospital today to dedicate Folden...We had planned this about a week ago but the timing was perfect....Charlie said everything I needed to hear...It was all so special and all of a sudden it all became real to me....Folden's illness is not an act of God but an evil that is trying to weaken our faith and make us doubt God...This evil has tried to get to us before...But somehow, we always overcame it and grew as a family...This time...It went for the most fragile thing around us...Our baby son. This evil knew that it could make us question God by manifesting itself in Folden...The very purest....But I believe that Folden was healed yesterday and Charlie's visit even made it more believable....The evil is still here lurking...It gets into my head and I have bad thoughts...It has fought me for the last hour while I have tried to write this....But now that I know what is going on, I am going to fight harder and harder....There is no place for it here....So tonight, please don't pray for Folden...Pray that everyone around him has faith and believes that he is healed...God does give us more than we can handle...and he hopes that we will surrender and reach for him to help us through it..He sent my family something tangible to hold on to...Something to see God through...Just what I asked for...Thank God for this blessing....I promised I would tell everyone about this miracle...Please thank God tonight for helping us through this, for the faith to overcome this evil, and the strength to turn it over to God and believe...More later...L.

Wednesday, May 19, 2004 10:31 PM CDT

Hello Everyone....Thanks for all the journal entries...It really does make it seem like I have a whole group of people standing around to help me find my footing to keep going forward...I believe I would have fallen a long time ago had it not been for the countless entries...There really is no new news...Folden III met with radiation this morning and reports that things are progressing as expected...The baby's testicles seem to be responding and further radiation for the rest of his body is being scheduled. I plan to see him tomorrow...I have tried to spend most of my time each day with the girls...Wilson, most of all, is showing signs of intense stress....Its kinda hard to tell what is going on with Anna Gaites....I have tried to keep them busy with fun things...Catching frogs...getting ready for school parties...making goody bags and so on...Each night they head to my bed and "scrooch" up next to me...That's a safe feeling...probably more to me than them...Each morning we all wake up on the same pillow....I can't seem to get all this straight in my head...I feel like I am watching things spiral out of control....Folden says it feels like being completely paralized and watching life go on around you unable to participate...helpless...no movement, just lost in overwhelming thoughts with no control over anything...no ability to intervene...I have to agree...I am very sad but hopeful....I am still clinging to that one in a million shot that Folden IV is going to walk out of that dreaded place...I want to see him splash through the mud puddles or take a ride on the big, big, boat...I was looking at some pictures of him that we had taken in December...Thanks to Lorie Paulk for fitting us in at the last minute...That was the last time I have memory of him looking like himself...In comparison, I can see how sick he actually is...From rosy cheeks and bright eyes to a frail little boy with ashy pale skin and more bruises than I can count...Inside him, I can still see that light glowing that draws us all around him for warmth...You wouldn't believe that it is him that holds us all together...He keeps us in the fight...Sadly, I can hardly remember him as a healthy baby...We really only had a year and my mind seems to have drifted away from all of those images...hidden them somewhere safe to protect me from falling into a deep pit of endlessness....You really should savor every moment...You never really know, after its all said and done, which day is going to have been your best day ever...I hope mine hasn't passed....Its kinda like Wilson told me the other night..."Mommy, if something bad happens to Folden...We'll just have to all go with him because he is the only thing that makes us feel happy...." That is a lot from a 7 year old...Someone asked me just today if I get tired of everyone asking me about Folden...and of course, I don't...But I did think about my usual response..."He's hanging in there"...There really is nothing else to say without going into some big spill about percentages and statistics....I see some people smile at me and then lower their eyes in sympathy...That really makes me sad knowing that I have made someone feel uncomfortable....plus, I wonder what that thought was....Did they think that I have no hope...? That my miracle can't happen...? You know what I want to hear...? As selfish as it may sound...I want to hear that Folden being sick has somehow changed your day...Either you gave someone a hand or you let your kids splash water all over the bathroom just because that's what kids do....Maybe you donated platelets or gave your child a dollar for the Bulldog sucker fundraiser...Maybe you hugged your child tighter than you did yesterday....or you sent an extra payment for the fieldtrip so that another kid could enjoy it, too...I am not preaching by any means but if God puts something in your way...don't step around it and continue on with your life...We are all put here to help out and make a difference....I walk through the halls everyday on the 5th floor and see countless bags of platelets hanging on those poles...Life saving blood products that are always in demand....I know that some of those came directly from the veins of friends of mine...You made a difference that day....I have been stopped too many times to count and thanked for the gift cards that have been distributed up there by Folden's friends....God bless you for what you do...Please let me know that Folden being through all of this is not passing you by unnoticed....I am still fighting so you don't have to feel sorry for me....I believe with all my heart that Folden could have been the son of any of you....and you would be sitting here right now trying not to focus on the bad that is happening but the good that can become of it....Thanks so much for tuning in...especially tonight....L.

Tuesday, May 18, 2004 2:17 PM CDT

Most of our test results have come back and none of them are good....I am trying really hard to stay with the facts so that this doesn't come out sounding so dramatic, but no matter how I rehearse each word in my head...it comes out sounding bad....The bone marrow aspirate shows about 60lasts and appears to have become resistant to the mylatarg. His spinal fluid, which up to this point has not given us anymore trouble, is now showing blasts....Preliminary tests on his testicles show disease, as well....We have begun radiation which should take care of some of the problem areas....The options presented to us were to either take him home and keep him comfortable and enjoy him for about 2 weeks or to go straight into a second transplant...The doctor assured us that children do recover from a second transplant however, to date, none have recovered after only 50 days between each one....Obviously, I am devastated but Folden and I both agree that one chance is better than no chance and Folden IV has been through too much and battled too hard to stop now....I realize this will be hard on him physically but we have decided to move forward....Folden III tells me the baby is going to be fine....Right now, that is carrying me completely.....More later...Love, L.

Friday, May 14, 2004 8:48 PM CDT

Not a lot to report...We are running several tests to see exactly what we are dealing with....Hopefully we can tell more about the situation by Monday....Have a great weekend...(The picture is Folden playing with his wonderful best buddy...Jim) Love, L.

Thursday, May 13, 2004 7:56 PM CDT

Hello Everyone....I just left the hospital and Folden seems to be a little better...The fevers are under control...He was moving around...He ate a few bites....Overall, I felt better about him.....I really had him on my mind today so I decided to keep the girls out of school and we headed to Durham...He was sleeping when we got there so we hung out at the apartment and visited after his nap...He seemed to be happy to see us....Everyone around him looks worn out though...Folden III has stayed with him this week and I can see the signs of stress peeking through....He seems more anxious than usual...I guess all of the possibilites weigh heavy on him....But that baby loves his dad....I don't know which one holds on tighter....GeeRose and Ampa are there, too....Ampa looks a little worried as well...I don't see that too often....I hope when Folden IV gets out again, we will all come around...Its hard to see everyone so frustrated...I think this whole thing about bad cells hiding out is concerning to everyone...We met with radiation tonight and I guess we will start that fairly quickly....He will never father children biologically but at this point that is not a priority...I just hope it works...We will have to have treatments everyday for 2-3 weeks and then we will know if he is going to respond to radiation...That information will help us to prepare for the next transplant which will include full body radiation....He is such a great kid...The thing that bothers me most right now is that the weather is so pretty and instead of running around here in the summer sun, he is cooped up in the hospital being pumped full of medicine...He doesn't even remember what summer is....I am working on my disposition...Folden III says we can wallow in it for a couple more days and then we have to pull ourselves back together....and that is what we will do...I hope you all have a great weekend...Love, L.

Wednesday, May 12, 2004 5:26 PM CDT

If you really think about it...Hope hinges just on possibilities...The very smallest stroke of luck can carry you for days....a falling star, a four leaf clover, a special prayer....Any little spark in the darkness can fill you bursting full of endless hope...But the funny thing about hope is that it can also fall apart with just a speck of doubt...One wrong word or action and you lose sight of your hopefulness....and get lost in self pity and cynicism...

Folden has been readmitted to the hospital for fever...Folden III and Ampa took him in last night...I think it actually got to 103....He doesn't look so good and this morning his platelets had dropped to 3!!! That is just not good at all...Sunday, he bit his tongue while we were playing...Nearly half of his tongue and a big chunk of his lip were covered in a mass similar to a blood blister....Its amazing that he hasn't bled to death...We have been expecting a fever since then...Blood under the skin like that is a perfect environment for bacteria...especially in the mouth....He looks a little weak...but he still has his spirit...We have been a little concerned about his testicles and after having it all checked by the doctor, they think that its where the leukemia may be hiding...An ultrasound was done today...I guess we will wait for the final word....We hope that radiation can handle all of it and finally get the bad cells out of his body....The doctor says that each thing that happens to him either falls in the column that makes the transplant a more successful possibility or a less successful possibility....So far, everything that he has said has made me feel hopeful....Today, something in his voice and his actions just led me right into a less hopeful state...I can't put my finger on it but I am really in a bad place...I don't know if its just timing or if it is circumstance but I can see everyone beginning to tire...By looking in the mirror, I have begun to see the signs of stress....My outsides are once again beginning to look like my mangled insides....The dark circles, the fear in my eyes...Mountains of worry hiding behind on single thread of hope....I sometimes feel like I am in a dream....I am screaming and fighting with every ounce of my being....Screaming louder and louder-praying someone will rescue me but no sound is coming out....No one hears me...The harder I scream and the more I fight, the further away my existance becomes...No one hears me at all....

I can't say today is not a good day....The baby is hanging in there and so is the rest of his family....The girls are happy and looking forward to summertime...We still have hope...We don't know how much....I do know that things are still in God's hands and I have a lot of good friends pulling me through....So, all in all...today is not a bust...Love, L.

Tuesday, May 11, 2004 6:03 PM CDT

Hello....I just received the official report from transplant land...Folden IV is doing well...He is active and enjoying his daddy....He has stopped eating as much as usual...Folden III worked with him tonight to get him to eat a little....We are trying to keep him off the IV nutrients...His platelets keep bottoming out which bothers me, but is expected...I think normal is 150-450...His are consistently 8, 9 and 10....He keeps getting nose bleeds and his little legs are bruised really badly....All of this is hard...He can't go outside too much anymore because of his sensitivity to the sun and his counts are so low that even the outside air could do damage....I pray that he can continue to fight this stuff...I hope that as the days pass after the myletarg that he will begin to overcome alot of the side effects...He is like a bright, burning candle and we all feed off of his light and warmth....When the candle dims a little, we are all a little lost..."out of sorts"...Me especially since I am still in Princeton and he is in Durham...Though, it has been fun doing things at school with the girls...The end of the year is a rush for me...I enjoy getting ready for all the activities and it helps keep me busy....This is something I can do...With Folden, no matter how hard I work...it doesn't change his situation....Please continue to pray for Folden and all the kids and families on the 5th floors at UNC and Duke...Say a special prayer for Amber Ashworth....(www.amberashworth.com)
I still have found no words to express my thanks for all the donations, emails, encouragements, cards, and all the other things that you guys do to help make our days better...I thank you from the very bottom of my heart...L.

Monday, May 10, 2004 8:09 PM CDT

Hello Everyone....I have had a hard time lately keeping the journal updated...The recital took alot out of us...We enjoy it but it is quite a bit of work...Especially when we practically live in two households....I left on Wednesday with every intention of going back over the next couple of days to see the baby....But each day was packed full of things that needed to be done and I didn't get back to Durham until Sunday...By Friday, I had a heavy heart....I missed him so much but I wanted to be with my girls...They have been so unselfish throughout this whole ordeal...When Folden walked up in the parking lot with that baby on his hip...I had a melt down....I was so happy to see him...I grabbed him and hugged the stuffing out of him....I felt recharged...That was definitely the best surprise I have ever had....The girls were beautiful and I was very proud to be their mom....

Mother's Day was nice...We didn't get to go to our family cookout with my dad's side of the family but we all were able to spend a little time together at the apartment...It seemed good to hear the kids laugh and play while the rest of us just hungout the whole afternoon....

I was so glad to spend a few days at home...Even if they were a little busy....It made me think of all the Christmas Eves after my brother had died and I had left home...My kids would litter my mom and dad's house with boxes, bows and tons of wrapping paper....When it was time to go home to get ready for Santa...Folden and I would start to clean up....My dad would insist that we leave all the mess right there in the living room...The harder we tried to clean it up, the more he argued with us to leave it....Late Christmas morning we would stop back by their house on our way to my Grandmother's...The paper would still be right where we left it....After this week at home, I realized what my daddy was doing...My kids had friends over a couple of days and the house was covered in dress up clothes and toys...I couldn't take a step without tripping over someone's misplaced shoe....It was absolutely chaotic...But it helped filled the empty space...All the clutter camoflauged the fact that there is a huge void here....Without the whole family here, everything feels so empty...My daddy allowed the paper to stay there until Christmas night....As long as the paper was piled around, the sounds of children and happiness lingered within it..much like the Christmases we had shared not too many years before...He really missed us....I can't wait to get my family back home again...I want this house full of laughter and chaos...Anna Gaites has told me over and over that she wants to go back to our old house in Clayton...I asked her if she enjoyed her school or did she miss someone at our old house...Nothing made sense to me...There we had .33 acres...Here there are 20 acres to run and play on...four wheelers, golf carts....and lots and lots of room...Her room is just how she wanted it...A bed with a built in slide that her daddy made for her...A great playroom...A pond for her ducks....A pasture for as many animals as she could ever want....This place is perfect for a little kid...But she wanted to go back...I finally asked her what she could possibly miss about that house...She said that we could all sleep together there...Last year, near the end of school we packed that house up to sell...We were headed to the beach for the summer....But Folden's treatment took us to Chapel Hill instead and all of us have been separate for the most part ever since....I realized how important family is....Anna Gaites would give it all up just for us to be together...and so would I....

I do want to mention that today is Folden III's 35th birthday....We haven't really planned a whole lot to celebrate...In fact, I am in Princeton and he is in Durham...He is not really a birthday party person....but nevertheless, Happy Birthday!!! I hope all your wishes come true....Love, L.

Friday, May 7, 2004 9:58 PM CDT

Hey guys III here. I just got back from the dance recital and IV is fast asleep. Today at clinic Dr. Martin gave us clearance to take IV to see his sisters, so off me, ampaa and gee-rose go. The thing was that Lori didn't know we were going. so when she saw IV she was so excited. She said it was the best suprise ever.
On the way back tonight as I drove there was no music, just random thoughts. Thoughts of how fortunate my family is despite what is going on. We are blessed because of Ampaa, Gee-rose and NANA, we are blessed because of the support everyone has given unconditionally, we are fortunate because of our beautiful daughters and we are fortunate because of Folden IV.
A couple of days ago as I was heading to the hospital I believe I was spoken to, I know there are times when you here that little voice inside telling you something but this was diffrent, very diffrent. It was so real and calming. And what the voice said was 'don't worry Folden is going to be fine'. Since that my outlook on this whole ordeal has changed drastically. I trully belive IV is going to be fine no matter what the outcome. It won't be easy but like they say the easy road is not the best road to take. If you remeber my entry when I said it isn't over until the fat lady sings well I don't think she even know where the stage is.

Thanks and God Bless
III

Thursday, May 6, 2004 8:10 PM CDT

I had a little time on my hands today to really think things over...I thought about so much stuff and several things were clearly journal material....I thought about the 14 American Legion Ladies' Auxillary members from Benson who all had on "Me Fine" t-shirts...and walked in the rain in honor of a little boy whom they had probably never met....I thought about churches all over the United States who have mentioned Folden's name in request of prayer from members who have never even heard of Princeton, NC....I thought about all my friends...and how much each one has profoundly impacted my life...Even during the rough spots, something was learned...Something that brought me here and helped me to prepare for this journey....I thought about what my faithful old friend Rebecca wrote....Its not what happens to you in your life, its how you deal with it that matters....and as many times as I have heard her say that...it just dawned on me today that it doesn't just have to mean the bad stuff...We all have baggage that we have to handle everyday and obstacles to overcome...but we also have blessings and at points in our lives they are certainly in abundance....whether it be a few extra dollars, a little extra time to run an errand for someone or even an extra plate at dinner....What we do with all that can really make a huge difference for someone else....I thought about how everyone talks about how limited their time is and how they can't get around to doing a whole lot because of their obligations...If someone had told me about this whole thing a year ago...I would have said, "I can't have a kid with cancer...I volunteer at school...I have two little girls who have lessons almost every night...I work...I have a million errands everyday...a house to build...and on an on and on"...But somehow I made time for it...I thought about all the kids who go through this with a single parent or without the support system that we have....Not everyone is lucky enough to have an Ampa....You can't imagine the difference that he makes......Did you know that siblings of the PBMT patients can't stay at the hospital?...and some families have no one to take care of their other children while they are on the unit?....I thought about one of my cousins that had Hodgkins when she was in her early 20s...I was mid teens....and how I allowed my life to continue on, uninterrupted...still busying myself with the telephone, homework and my plans for Friday night....I wonder if I had stopped, could I have made her day different...Could I have helped pass the time....She is fully recovered, thank goodness....and I have watched her become very active in the battle to save Folden....She knows that it takes the whole village...I wish that everyone could see what I see without having to learn it the way I have....I even listen to things differently....It is so important to find a way to make a difference....It really doesn't matter how...I thought about my conversation with one of the teachers at my kids' school today....(Please don't give up on him...If anyone can make a difference in his life...You can!!! You may not see it now...but as with so many others whom you have taught...It will shine through in time to come...) People are put in our lives for a reason...Sometimes in the beginning, it seems like a mistake...But there is always a reason...I guess you can tell that I had a lot of time to think today....I really had this profound entry ready in my head...But it all left me when I called today to check on the baby....One of the doctors at clinic reported that Folden was tolerating his myletarg very well and everything was looking good...although his labs showed that he had blasts in his peripheral blood...That means that the cancer cells that are made in the bone marrow are abundant enough that they are spilling over into his blood...He said that it was expected....I was devastated...Another train crash for me....I was hoping that we could ward this off for a while...and buy some time...It seems there may be other plans...I am not giving up...I am just getting a little frustrated...It doesn't change anything treatmentwise...It just gives me more to worry about....Please say a prayer for Folden....He has been asking to go home...That is hard for me to take...Pray for patience and a cure....The journey just seems to keep getting longer and longer...Thanks for listening...I try to write down most of my thoughts and sometimes I forget that other people are reading this....Have a great weekend...It is supposed to be beautiful...Love, L.

Wednesday, May 5, 2004 12:45 AM CDT

Hello Everyone!! Isn't it a beautiful day....Folden is feeling really great...Ampa and I have about worked out our schedule and everything is becoming as routine as possible...It is a lot of work, but from what I'm told...we have a really easy regimen....It takes about 15 minutes in the morning to draw the labs and give him his medicine and about 30 minutes at night to run his medicine and give the oral ones...Not too bad...The other stuff is basically what we did before...Not too overwhelming....We go to clinic everyday...Yesterday we didn't do a whole lot...so we were out well before lunch but Folden's nose started bleeding so we headed back to clinic for a few platelets...Folden and Ampa ride to Jordan Lake everyday to see the boats....Mommy is not allowed to go...I stay behind and catch up on the domestic duties....But overall, I am very content with how well everything is going...They start the myletarg tomorrow...That is at least a 6 hour visit to the clinic...Folden takes it in stride like he does everything else...He is amazing...I am at home...It is recital week for the girls and I just wanted to be a part of something that they have done...Sometimes I feel like I have let them down...abandoned them...I hope one day they understand my intentions...The baby is happy, though...GeeRose and Ampa are with him...He knows life will be good for a while with them there...He doesn't have to lift a finger and if he even thinks it then it is made so....The nurses were impressed that he didn't cry when I left...I told them he didn't care...He probably wishes I would leave so that the partying could begin...Its time to pick the girls up from school....I know that sounds mundane, but it is so exciting for me...to actually do something normal...I can't wait to see them...I miss them every minute of every day...Have a great day and please continue to pray for Folden and the other kids...We lost another one from the unit on Sunday...We are all heart broken...she was such a fighter...and we were blessed to have crossed her path....Love, Lori

Hey guys III here check out the new picture!

Monday, May 3, 2004 2:07 PM CDT

Hello Guys....Thank you for continuing to follow Folden's story....I am overwhelmed by the outpouring of support from everyone...Believe me, we would have never made it this far without all of you behind us...You know that there is so much that needs to be done to help the other kids, their families, and in the cure for all cancers...Its time for the Relay for Life event in Johnston County...Check out the guestbook entry for more information or contact Linda.Parnell@andrew.com to participate....I hope we can take Folden even if only for a short visit....If anyone wants one of Folden's t-shirts let me know...I have a couple left....

Well...We went to clinic today...The doctors are still a little puzzled with our situation....The plan is to start this week with one of the drugs that will hopefully keep the leukemia cells under control....We have to wait for at least 2-3 months before the transplant can be repeated....(about the time we would have reached 100 days)....The protocol for the transplant will be about the same...The only difference will be radiation....I am scared of radiation because of some of the long term side effects but the doctor assures me that they will be minimal....I figure it doesn't matter if he would have been very tall or very smart if he isn't here at all and the radiation seems to be the factor that we have been missing...Statistically, we have about the same chance as the first time...We may have some liver damage because he has been hit so hard in such a short period of time...Again, that's a chance we'll have to take...Infection is the big thing...That is the scariest thing of all....But here we go again....Again, thanks for taking this roller coaster ride with us...We need your prayers now more than ever....Love, L.

Sunday, May 2, 2004 7:54 AM CDT

WOW!!! We were all overwhelmed to see so many people at the walk with "Me Fine!" t-shirts on....Several volunteers commented that they had never seen that kind of support for one patient before....Folden's team raised over $17,000......Last year, the top three teams together raised $16,000...so I think we had a good showing....We won first place in donations....That says so much for our friends, family and school....I am so proud to be a part of all of it....It was an emotional day...When the balloons were released in honor and memory of all the kids, it took my breath away....I hope to be there next year-still in the fight.....

I saw Folden's doctor yesterday....and the fact that he hadn't called earlier was a good indication that he didn't have good news...He said that the DNA tests did detect the trisomy 8 chromosome which means there is still cancer present and we will be moving toward a second transplant in the near future...It is not good news but we are ready to go...I am sad that we have to continue to be separated...Folden III and the girls at home and me and the baby here in Durham...That is so hard....and it gets harder everyday....Please say a special prayer for Folden...He is having such a great time...He feels good...He's running around and around this small little place and filling it with such happiness.....We go to clinic everyday, but that hasn't been so bad....Maybe we will get to go home for a few weeks before the second round starts...I think they are trying to space it out to give his body time to recover before hitting it again...Right now, he is having a good time....and we are all enjoying every little minute...Love, L.

Friday, April 30, 2004 8:48 PM CDT

Today is a good day....Folden IV is doing excellent....I am so happy to see him run around, ride his gator or push his lawn mower...He acts as if he has been set free....Full of happiness!! Aspyn is here with us, so that makes him even that much more excited....We have actually eaten real food...(Food that is neither hospital food nor purchased from a drive thru...) Folden III bought us a little grill and we have been giving it a workout....Everything is so good especially when we are all eating together and everyone is smiling...We still have no concrete results from all Folden's tests...Believe it or not the doctors say his test results are "unusual" and "confusing"....That's Folden IV...Keep 'em guessing....We had clinic today and all his blood counts were good...We go back Sunday...Folden III and I are learning how to work everything with his medicines...Most of his home care is the same as before...We have never had to administer his IV meds but it is fairly simple...It just makes me anxious a little...I worry that I will push the wrong thing and he will explode or something....Tomorrow is the walk to raise money for the PBMT unit...Thanks to all of you who have either donated or are walking....It makes such a difference....Its one of those charities where you can't go wrong...I am so proud to be a part of it...I will keep you posted on the outcome of the walk and especially the final word from Dr. Martin...Just don't worry about it though...I seem to have found a new peace....I KNOW that God is in control of this disease and the test results will not change that....no matter what the doctor says...everything will be fine..Just keep praying and giving thanks for all the blessings we have experienced so far...This could have been a whole lot worse that it has been....Thanks again for all that you do...Our family will never forget the kindnesses shown through all of this....Love, L.

Thursday, April 29, 2004 11:44 AM CDT

We are at the the apartment. Check out the new pictures.

Folden III

Wednesday, April 28, 2004 8:34 PM CDT

It doesn't matter the day...we are being discharged tomorrow...As Folden IV says, we are getting out of Dodge...Thank goodness.....We got the next level of testing back today and so far...NO CANCER CELLS!!!! We will get the final word by Friday which can go either way....I am not worried...Worrying has done nothing but make everyone around me worry...So we are all going to have a great time this weekend...Folden will be on his gator by noon..It is sure to be a fabulous day!!! Say a prayer....Love, L.

Wednesday, April 28, 2004 8:29 PM CDT

Tuesday, April 27, 2004 6:12 PM CDT

Day 25.....We did the bone marrow aspirate today and we have preliminary results....It seems that at least 90% of the cells are good....the other 10% could either be very young cells or bad cells...The tests are inconclusive at this point...We will know a little more in a day or so...That's all I have for now...I have read each of your journal entries and also the emails that a few of you have sent...I feel like its time that I put this in God's hands completely....I have worried that I don't have enough faith or that I am not close enough to God....I am so confused about religion and what it all means....Some of the emails I received today really helped me to point myself in a different direction...I am going to continue this journey with blind faith as I know it....I thank you all for the things that you write...You are right...Alot of it I do hear again and again...But the fact that you actually took the time out of your busy day to think of me is amazingly uplifting and probably some of it I do need to hear more than once for it to sink in...So please, keep the positive energy flowing....I will be waiting right here for a miracle....L.

Monday, April 26, 2004 1:24 PM CDT

Day 24......and I'm back.....I may have been knocked down a little but I am brushing myself off and preparing for the next battle.....

Friday was obviously a very hard day for all of us....and it all hit me like a ton of bricks....My family was scattered all over everywhere....I haven't really seen Folden III in 2 months...He is always coming when I am going...Anyway, we talked about the news from the doctor on the phone for a while and then I came back to the hospital to spend the night with Folden IV....Everyone here started telling me how sorry they were that this had happened to us and how unfair the whole thing is....It went on and on...Now, everyone knows how much I love all the nurses...They are incredible at what they do...I guess all the sympathy just made me feel like it was all over...and no one had told me yet....I really thought I was drowning...lost at sea in a terrible storm....The waves seemed to be crashing all around me and I couldn't see any way out....Then,the next morning, Folden III met me in the parking lot and like a beacon, just seeing him made me feel like I could get through it....I can always find my way when he is here....After that, things just seemed to get back in order...I went to the apartment and started cleaning and getting it ready for Folden...You know, a good spring cleaning can get your whole life into perspective...The more I scrubbed, the clearer it all became...I don't know what will happen...I don't know if Folden will ever get to drive a car, have a first kiss or even go to Disney world....But I do know that he is okay right now and because of him and what he has been through, I am a better person.....and I would go through it all again just to feel his chubby little hand wrapped around my thumb just one time...So, like Folden said, don't feel sorry for us...We are the luckiest people alive.....L.

Friday, April 23, 2004 8:55 PM CDT

Day 21......You know, I'm here in this tunnel and I finally get my courage up to peek out at that light that seems to keep getting closer and closer....Just knowing that its the end of this long, dark journey that we have been on for a year now and WHAM!...out of nowhere, its a train...again...

Folden definitely has cells...but unfotunately, they are his own cells and not the donor cells...Bare with me...This is quite difficult....

Today, the doctor called to tell me that Folden's cells have returned and there is no sign of donor cells....This is not good...There are a few other tests that need to be done....but this is where we are....Our options are limited but there are still a few possibilities....The new cells are healthy...There is no cancer present...Further testing will verify....One other child went through this same thing and he/she is one year post transplant now and doing fine...no sign of leukemia...So, I guess there is hope....The other thing is to wait three months and do another transplant...We really weren't expecting this....We always worry about the wrong things...I have been hearing about statistics and chances for over a year now...Things like, "Oh that never happens...That's rare...We have never seen that here....That is not usually a problem...blah, blah, blah...." It seems that everything that is not supposed to happen, happens to my son...After a while, all I hear is blah, blah, blah....

I look at my beautiful girls who have practically been through the last 12 months without a mom and dad...Sure, they have been taken care of, but a kid needs her parents...and I see how they have suffered because of all this and the worse part is there is absolutely nothing I can do about it...It is the hand we are dealt...Yes, I know that I should be thankful that he is still here and that there are other possibilites that are much worse...but after you've been hanging on by a thread for so many months, even that begins to sound like blah, blah, blah...

I've done everything asked of me...I've stayed relatively optimistic, I've developed a reasonable amount of faith and I have tried, within my limits, to help the people around me...Well...what now??? UNCLE????? I give??? What's the magic word....??? I'm lost here....defeated....I don't know what else to do...It's just hard to watch my family face more bad news....I realize you all carry your share of weight and I really have no right to be unloading it all here...So, I think I will sign off for a few days and regroup..My state of mind is not helping...I just don't want to deal with it all.....

I know that we need to pray...I just don't know what to ask you to pray for...a couple of empty beds in the crazy house, maybe???

Thanks for listening...L.

Hey guys, I know my entries aren't as dramatic as lori's but today I feel I should add also.
First,,,,,,,,,Please don't feel sorry for IV or my family. Everyone always asks us if there is anything they can do well there is. PLEASE DON'T TELL US YOUR SORRY. We don't want anybody to feel sorry for us. This is so for several reasons. When we are told that you are sorry if makes us feel as if you are giving up and I assure that IV or our family is far from that. Besides today is a great day. I have folden with me. Just last novemeber when we relapsed we were told that Folden only had a 20hance of survival and today he is still here with us. If in fact folden is growing his cells and they are cancer free that was the objective to begin with. As long as he is cancer free I don't care whose cells they are!!!!!!!!!!. Another thing to remember if they are his cells and cancer free we get to go HOME not to the apartment and our family is will together again finally. Also please remember that even if donors cells are present Folden still only had about a 40hance of cure. So this is where we are, these are the cards we were dealt and the hand we must play. Please don't count us out and contiunue with all the prayers because the fat lady hasn't sung yet.

Thanks, Folden III

Thursday, April 22, 2004 7:58 PM CDT

Day 20....Folden is doing well...We should be getting out very soon....I updated earlier but somehow lost it...I will update more later when we get the test results....Love, L.

Tuesday, April 20, 2004 7:49 PM CDT

Day 18....I think....I have actually lost count....and to think there was a time that I could tell you the minute....Things are looking good....He is beginning to eat a little...His WBC is up to 2.2....That's just awesome...another little boy around his age was transplanted the same day and his WBC is .7...and that was his 2nd transplant...God has really blessed us....I can only hope that Folden continues to thrive....The doctors are beginning to condition Folden to leave the hospital...They are decreasing his TPN...(nourishment) and they will begin to cut his pain medicine gradually....There are a couple of others that will be discontinued as well...They want us ready to go around the first of the week but we think we should stay until about day 30...Some of the other kids have left after a couple of weeks and have had to return with various problems...Nothing that couldn't be fixed, thankfully....Folden has been incredible in the hospital...He calls it his room....But, when he gets to leave and smell the green grass and I tell him we have to go back to his room....I don't think so...We are trying to be sure we are ready to leave and stay out....The doctors drew blood today to test to see if the cells are Folden's old cells or the donor cells growing...We should get the results by Friday night....Pray for new cells!!!! We have to start getting the apartment sterilized...Folden may have a white blood count but the cells are premature...and not able to fight off infection...The remainder of the 100 days are going to be tough as we must keep Folden from getting sick....My cold is a little better...I was able to see him today for a few hours...with gloves and a mask of course...He was so sweet...He said he loved mommy most.....and as always, I gave him a surprise for the day....a new truck...Let me tell ya--He needed one...He looked great...He was not that active but I think he was a little tired...He woke up a little earlier than usual....When I left...He cried for me to stay...Now that was hard...I had to get back to school to get the girls...I feel like they need me, too....It will be so much easier when school is out and we can at least be under one roof and we all don't feel like we are having to choose between the baby and the girls....He was okay within a few minutes and GeeRose rocked him to sleep....Ampa said he had a good afternoon and was happy to see his dad this evening....

I want to thank you all again for all the boxes and baskets full of things for Folden and the other kids on the floor...I have not been able to thank each person individually but your kindness does not go unnoticed by anyone....Someone stops me at least a couple of times a week to ask me to thank Folden's friends and family for the food, toys, gift cards, etc....It makes me so proud to be on your team....You have to realize--some of these families are from other states...hours away from family and their support network....They may be having trouble keeping their homes...plus, a few new toys for a child who may not be feeling so great is really good medicine...There are so many things that can be done and I am so overwhelmed and thankful for all that you have already done...I will never forget it and I assure you, it has made me a better person....I see what a difference you have made and I want to continue what has been started even after Folden is home and well...There will be kids coming and going on that unit for a long time....I don't want to forget...Have a great week...Love you all...L.

Monday, April 19, 2004 10:39 AM CDT

Day 17....Folden's counts are up, up, up, and away!!!!! WBC= 1.1...It has doubled since yesterday....Isn't Superman awesome....Thank God for this blessing...We are not out of the woods yet, but we are getting closer and closer everyday....GeeRose and Ampa are staying with the baby today...I have a cold and am a little worried about exposing him...I miss him terribly....I spent the night with him Saturday night and it was so wonderful....We read books and played...he was all mine...I didn't have to share him with anyone...When everyone got there on Sunday, he still wanted just mommy....You know my poor old heart was about to explode...Then his daddy came in and he told me to go get him a new toy....outside....at the store....so off I went...I picked the girls up and we came home....The plan is for me to stay with the girls this week and visit the baby during the day....It looks like we may be discharged to the apartment next week...So then, I will get to play nurse all day but at least he can play in the sunshine...Ampa said he is having a little pain today and GeeRose is rocking him alot...Joint pain is part of the cell growth process....He is on a constant drip of pain medicine and that should relieve some of the discomfort...

We lost another one of the children last night....That is four already in the 50 something days that we have been there....It is so hard to be so happy with our news and at the same time watch a family lose a precious child...And to make it harder, these things never happen suddenly...it is over several days....The nurses love these kids...and they are hurt as well....It is all just terrible....It takes a while for everyone to recover....Alex was a wonderful kid...He was about 20...He was engaged to a sweet girl...He walked down to Folden's room almost everyday to say hello...We passed some of the phone and gift cards on to him so that he could get some of the things he needed as well as speak with his family in Rocky Mount and his girlfriend at college in Greensboro...He fought very hard to overcome the odds that were stacked so high against him...He had a peace surrounding him that you could feel anytime you were near him....Say a special prayer for his family and his girlfriend as they look for the strength to continue their lives without Alex...

Isn't today a beautiful day...I am barefoot...enjoying being home....I have cleaned out the refrigerator today...Doesn't sound too exciting to you, I know...but I feel so blessed to be able to be in my own home...and I have to stay busy or the scary thoughts creep in and almost smother me....As I walk around outside and see what weeks of neglect can do to a place, I try to see us all here after the 100 days...Oh, the things we will do....I can't wait to hear the laughter and squeeling....all the noises that a gang of kids make while playing outside...Water fights, dirty feet and ice cream dripping down their chins....the hum of the four wheeler and the tractor....chasing frogs and catching lady bugs...It just can't get here quickly enough...Right now, I walk around and see all the toys...The little John Deere tractor that he loves so much....It almost calls to me..."Where's the little boy..?"....like an old nursery rhyme..."Where's the little boy that rides on the tractor?...With shiny blonde hair and very blue eyes.....Where's the little boy that climbs the hills and hides behind the trees....4, 5, 6...come find me...." Okay...I'd better get back to cleaning...my mind has to stay busy so that I don't get too wrapped up in the future...One day at a time...and today he is doing great...but no matter how well he does, it will not be good enough until he is here and safe...and until then, when we are all together...nothing matters....Life is just merely going through the motions....I miss my Folden so much....The healthy little boy that rides on the tractor.....L.

Saturday, April 17, 2004 9:39 PM CDT

Day 15

WBC .3. Oh what a glorious day. Superman is doing great. Dr. Martin called today and said he is doing great and if everything continues we may be at the apartment in a couple of weeks. Thank you all for everything, especially all the prayers.

Folden III

Friday, April 16, 2004 9:22 PM CDT

Day 14!!!!!!!!
Superman still continues to do well. Toady his WBC stayed at .2 which is a good sign and the rash continues. I stayed with him last night and we were up until midnight playing with the big, big toys. Sorry if my entries aren't like Lori's. She has a way with words and is truly an amazing person. Thanks for signing our guestbook and all the donations for the walk may 1st.

Folden III

Thursday, April 15, 2004 12:24 AM CDT

Day 13....I decided to write a little early today because we may have good news...I stayed with the girls last night and FW and Rose stayed with the baby....You know that means he is doing really well....Anyway...I woke up this morning thinking about my dad and how much he would have enjoyed this beautiful day...All the dogwoods are blooming so pretty out here...This was his favorite place to be...He was very superstitcious and when we were building our house he cautioned me about cutting down dogwood trees...He said it would bring bad luck...So, of course, I insisted that no dogwoods be cut in clearing the sight for our house...(Whether there were any cut or not, I don't know) There was one particular tree outside my bathroom window that was clearly dead...The landscaper and a few others told me to have it removed before it became more unsightly among all the other healthy trees...I said to let it fall to the ground but we would not be cutting it down...I tend to be on the superstitious side myself....Daddy had not been clear on the rule for dead dogwood trees, he just said dogwoods in general...This morning, for whatever reason, I happened to notice the tree...It is full of beautiful white dogwood blossoms...I lost my breath with happiness...That was my sign that everything is going to be okay....But that's just the beginning....Today is FW's (Ampa) birthday....He promised me that the baby would have a great day on his birthday...He always keeps his word to me so this morning I called to see how the baby was doing and you just won't believe it....His white blood count is up to .2 and he has a rash on his hands....All signs that the new cells are growing and thriving...... !!!!!!!!!!!!!!!!!!!! Now, I know that it is premature to be celebrating because this is ONLY an INDICATION that the cells MAY be trying to come in...I haven't seen him today so I can't decide what to think...I am just thrilled at the possibilities....After the update from Ampa, I was in my favorite little gift shop in Smithfield and there was a little flower pot on the sale table that said something about us planting the seeds but God makes them grow and referenced Corinthians...I just knew after all my little blessings today that Folden is going to be okay...Thanks for allowing me to ramble...I know Folden is going to read his journal one day and be so embarrassed....He is going to swear that all the stress really got to me....Hope you all have a happy tax day....and pray for new cells.......GROW CELLS GROW!!!!! Love, L........

Wednesday, April 14, 2004 6:08 PM CDT

Day 12....We are all doing pretty good...Last night, I stayed with him. He played until 1 am....It was actually fun, believe it or not. He makes such silly faces that even when I'm about to fall out, I still have to laugh at him. The steroids keep him a little cranky but it is a funny kind of cranky. Like, for example...one of us can be talking and he says "Me want duce...(juice)..." No one seems to move quickly enough for him, so he screams..."ME WANT DUCE!!!" Its loud enough that everyone stops, sort of startled....Then he grins...He loves the power...It is hilarious....

Physically, he is doing okay....He is so fat...Not only from the steroids but he is retaining an excess amount of fluid....He looks like a little butterball and when he moves around, he grunts....The doctors are really working on the fluid retention....I guess it is common among transplant patients....His blood pressure is also a little high....I think that was expected as well....Overall, he is still active, fairly content, and beginning to eat a little more....a couple of chips here, a spoonful of something there....and he is back to drinking sips of juice periodically throughout the day and night....

Last night we curled up on his bed and he snuggled up really close to me and soon I heard him slow his breathing...He was asleep in my arms....What a wonderful feeling...Folden has always slept with me..even since birth...But after the surgery on his chest and all the extra tubes and bandages, I started sleeping in the parents' bed...I pushed it close beside his bed and held his hand throughout the night...On the hard nights, I would lay my head on his pillow so that he could feel someone there....He has a lot of bad dreams and he wakes up crying....His body jumps in his sleep as if he's dreaming that he's falling....He always says, "Hold my finger.." But, last night, I got our favorite blanket and we snuggled up and slept throughout the night with my arms wrapped tightly around him and his chubby little hands securely around my thumbs....We read a few books, sang rock-a-bye baby and he was out....He woke up at around 11:30 this morning....and he's been going strong since....

That's our world....Nothing really new...Just waiting for those cells to grow....We watch for signs every day....Maybe within the next week we can start celebrating...It is time....The boy next door went home today...He was only 5 days ahead of Folden....only he used his own cells which respond quicker...I am so ready to get out of that place...I don't really even like the apartment all that much either...But it beats the hospital....There really is no place like home....I can not wait to get him back there....He seems to see his surroundings as normal...He doesn't cry when his sisters leave and he never asks to leave himself...He just makes himself at home and rolls with it...Just another one of the blessings that we experience each day....Can you imagine how much harder this would be if he begged everyday to go home?

I feel like I am just rambling on....So I will go for now...The short version is that everything is okay with Folden...Everything is right on course with just a few expected, minor complications...Mom has cabin fever but finds strength to continue through Folden IV's intoxicating laugh and resonating inner light....He is a wonderful son and so worth every drop of effort it takes to get him well....Love you all, L.

Monday, April 12, 2004 7:02 PM CDT

Day 10 and Superman is still hanging in there....His mouth sores are better as well as his bottom...(Thanks, Tracey, for the cream...)He seems to be sleeping a little more....Today, he actually ate a couple of Doritos....I understand from the older kids that they begin to start tasting salty stuff first....So maybe his sense of taste is coming back....He is very active and seems to feel pretty good....The doctors and nurses all seem pleased at his progress....He is retaining fluids some and his liver and abdomen are enlarged....They did an ultra sound today and didn't find anything alarming...Just something else that we have to watch...

Folden III has been staying at the hospital at night and GeeRose and Ampa stay during the day...I have been able to spend a lot of time with the girls...We have been to the mall, Chuck E. Cheese's and Build-a-Bear..We have watched movies, baked cookies and colored Easter eggs...We even had our own private Easter Egg Hunt....I have been spoiled by sleeping in a real bed for so many nights...It is going to be hard to go back to that dreary old hospital....I love spending time with him, I just hate being confined to that room.....We have been there for 42 days....It gets to you after a while...He has really enjoyed the change too...I walk in to visit and he says, "Where's my toy?"...After he gets his surprise for the day, he's ready for me to go...He wants to play with someone new...Unless he feels bad...Then he wants mommy...."Hold my finger mommy....Sing Rock Baby"...(I know my place!)...

He's really talking well...He even knows a few colorful words for some of his body parts...Everyone on the floor has gotten a kick out of his descriptions....He can say anything imaginable...and in a way that you can't help but laugh....He keeps us entertained...but his best saying is "Me, Fine"....He says that if you ask him if he's okay or if he needs something...I don't know many other people who can say that....

Now is the waiting game....Praying everyday that he doesn't get sick...hoping that nothing effects him so much that he can't recover...There has been so much sadness in our unit since we got there...I worry everyday that something is going to get to him....I keep going back to what Folden III told me when we would take the boat out to the ocean...."Keep looking toward where you are going...to the horizon..not where you are..." Anytime the water became a little rough and the boat rocked, I always watched the horizon and the sick feeling would subside....I guess that will get us through for now...Folden is going to be running in the sunshine and wading through mud puddles soon, I know....But for now he has to complete this phase...endure the treatment in order to continue his journey....We will look forward to the day when he's chasing the cats, writing on the walls and spying on his sisters' boyfriends....I can't wait to have another day with us all sitting around our kitchen table, eating spaghetti and talking about our day....I look forward to having him home....alive and well...That's my horizon...

Have a great week....We appreciate all your prayers....Please remember all the 5200 kids and their families....L.

Saturday, April 10, 2004 10:03 AM CDT

DAY 8!!!!!!!!!!!!!!!!!!!!!
SUPERMAN is doing great. The doctors and nurses say everything is happening just as it is suposed to. Thanks to everyone for the donations. The gift cards were really apreciated by all the families and the easter baskets will be given out tomorrow. Not a day goes by that my family isn't overwhelmed by all the prayers and support you guys have given us. We are truly blessed and feel that because of you Folden's illness has tuly touched and changed the lives of many people. It is said that god has a plan for everthing that he does and we can see his plan for folden through you!!!!!!!!!!!!!. Thanks so much and god bless..

Folden III

Wednesday, April 7, 2004 6:47 PM CDT

Day 5, 95 more to go. Thanks to everyone for all the gifts. Not a day goes by that either a patient at my office or others are dropping something off to bring to the other kids. Today someone donated their beanie baby collection.

Tonight I get to spend the night with my hero and that is always fun. He is wearing is new pajamas and I think the symbol on the shirt says it all. If anyone is superman it is him. Check out the new picture. Thanks again and god bless you all!!!!!!!!!!!

Folden III

Tuesday, April 6, 2004 6:55 PM CDT

Day 4....96 days left and we can go home.....It seems like an eternity....But its okay....His mucositis has become serious enough that he has been put on continuous pain meds...His bottom is a little better...He is in good spirits....He is getting his days and nights mixed up...He was up until after 1 last night and slept until almost lunch time today....That is not good for me....However, I don't think its alot to be complaining about....There are too many sad stories up here....Our neighbor is not doing so well today...He has actually been here since September, I think....He has had 3 transplants....His name is Terrence--They call him T...He is fighting so hard...Please take time to sign his guestbook....His mom is working so hard to keep him....and needs to know that we are all supporting her through prayer...www.caringbridge.org/nc/terrence....

I am actually going home tomorrow...Second time in 5 weeks...I can't wait....I hate leaving Folden, but I miss the smell of my own house....The feel of my own bed....You don't realize what makes you feel safe and happy until you are without it....I can not wait to take him back home....But for now, I am going home to participate in the girls' Easter activities at school...Something normal....I may even be able to get my hair cut...Man, you have no idea how bad a person can look and feel when they need a serious haircut....Folden III and GeeRose will be taking my place...Folden IV surely needs the change of scenery....

I can't even begin to thank everyone for everything that is being done...I am so impressed with the kids at Princeton....$1,100 has been raised for the walk benefiting the families on 5200....I am so proud of you....So proud to be a part of the school and the community....I just wish you could see how much it all helps....You really deserve a pat on the back....Also, thanks for all the mail...We have received so much fun stuff...for Folden and to share....It has become the highlight of our day....He has to open it all and then he says..."Yook, Ampa...Yook at dis..."Thank you all so much.....I love you all....Have a great week...L.

Monday, April 5, 2004 1:49 PM CDT

Day 3!!! 97 more days and we can go home!!!! I am a little late updating today because the morning was difficult...Folden didn't sleep well last night...I was up nearly the whole night watching him...I knew something wasn't quite right....He cried and seemed to be having bad dreams...His heart rate was up some indicating pain....This morning he was sick a little....The nurse gave him some medicine to help him rest and he finally went to sleep around 8:30 am to 12:30 pm....He woke up in a much better mood.....He acts closer to himself than he did earlier....I am so relieved....Its sad to be thankful for the side effects (That's how you know this stuff is working) yet horrified at what his body is going through...He already has a few mouth sores and a terrible rash on his bottom....Both appear to be quite painful....All of this is caused by the medicines and was expected....Its just really hard to watch him go through it knowing that it will only get worse....I know it is going to get better in a few weeks and he will be out of here....Have a great week...L.

Hey guys, check out the new picture. If we can't go fishing we can always make do. Sure was fun getting a hook wet. That was problably the best fishing trip I've ever been on!!!!!!!
Folden III

Saturday, April 3, 2004 2:46 PM CST

Day 1!!!!! It is so wonderful to finally be here....We can count in the positive now.....I am so happy to have the transplant behind us....Folden is feeling super....He is sitting up on his own and playing with a construction site toy that one of his special nurses gave him....He is an amazing little being....Thank you for your prayers...Thank you for your donations....Thank you for your cards, letters, emails, guestbook entries, visits, food, target giftcards, books, movies, toys and on and on and on and on....We have an exceptional extended family that includes you all...I never feel alone...I never feel that I have no where to turn....I know you are always there, holding my hand.....Please don't let go....The hard days are ahead of us....L.

Friday, April 2, 2004 11:52 AM CST

Today at 12:30 pm IV started a new journey with his new cells. The transplant went well without any reactions. IV ate his hotdog as his new cells were infused. Thanks to everyone and now we have to do the grow cells grow prayer.

Folden III

Thursday, April 1, 2004 2:19 PM CST

Day -1.....We are almost finished with all the chemo and conditioning medicines...Folden has done really well and everyone seems pleased...Tomorrow is the big day....Day 0!! His transplant should occur around lunch time...Please think of Folden if you get a chance....Pray that the old cells are gone and that the new cells will run through his veins and into his body and grow and flourish....It has been a long journey to get this far...

Did you see the new picture....Folden is enjoying a few new toys sent by one of Folden III's wonderful patients...Right above his head is a beautiful banner created by Anna Gaites' precious kindergarten class...He is taking my picture and saying, "Mommy, say teese..." I could just eat him up....He feels so good today. He has actually had one of his better days...He has begun the steroids and I can really tell it...He is bouncing off the walls...But at least he feels good and as always, he is so much fun to be around....

One of the kids here went home today...Lane...I think he was about 20...He had only been here about a month or so....Sadly, one of the other children earned his wings today....Alex, a 10 year old child with the same disease as Folden, left us around noon. Please remember his family as they continue their lives without the son that they love so much....You can visit his website at www.caringbridge.org/la/alexjohnson and offer encouragement, if you would like...I had the honor of meeting his mother, Mary, a few times...She was very reassuring and helped me to find my place as we began the process of transplant...She fought for Alex with every ounce of courage that she had...

Folden III will be here soon. I think the girls are coming, too....We all want to be here tomorrow to see the new cells go in.....I think F III wants to add a few things later, so please check back. Love always, L.

I can't begn to express my thanks to everyone. The gifts my dental buddies have sent have really touch the lives of so many people, The food everyone has sent has feed many of the families with something besides hospital food. And the gifts and toys sent here for the kids brought out many sparkles in tired eyes.
You guys can't begin to imagine how proud Lori and I are to have so many generous and caring people in our lives. And to my patients, you guys are the best ever, thank you for the understanding with all the schedule changes and for all the gifts dropped by to bring here. Thanks a million and please say a prayer for IV tomorrow during his new begining.

Folden III

Wednesday, March 31, 2004 9:46 AM CST

Day -2...We have gotten through the first night of the ATG....I think it is working....His fever was well over 103 even with tylenol....I was dancing around the room when it hit 102!!!! I could tell he was feeling pretty yucky when he went to sleep....Throughout the night he was restless and a little whiny....But otherwise, it wasn't too bad on him....(Thanks for the prayers!!!)...He is watching Sesame Street and eating peanut butter with Ampa....It is another good day.....

I can't thank you all enough for all the support shown to Folden and the causes surrounding him....I am so overwhelmed with everything that is being done for him....And for all of you at Princeton School who are involved in raising money for the walk...Words can't describe what I feel...I am so proud to be from PHS...You can never imagine how uplifting your efforts are to this family....From my very soul, thank you. L.

Monday, March 29, 2004 12:37 AM CST

Day -4....Still counting....We have finished the first phase and are now starting the melphalan....ATG starts tomorrow afternoon and is supposed to cause hives, high fevers and nausea....Believe it or not, we are praying for all of that....If it doesn't effect Folden, then we have to worry that it is not working...So, I guess our prayer should be that the ATG works as it should and Folden is able to tolerate the side effects....I am not looking forward to it...But I know to see a rainbow you gotta look through the rain....He is still strong and he seems to be feeling okay...He has lost a little weight but is keeping us all entertained with his unique little personality....If you ask him how he's doing, he says, "Me fine"....I got him a little gun that shoots nerf bullets...Each time a doctor or nurse comes in, he says, "Get my gun, Mommy..."!! He is so funny....Thanks for the cards....Folden loves to open the mail every day....He looks at each one again and again....I hope you all have a great week....and thanks again for thinking of us....L.

Saturday, March 27, 2004 4:45 PM CST

Day -6.....Folden is doing great....He is having some of the expected side effects of the chemo....(We're changing alot of diapers!)-But otherwise, he is happy and seems to be in good spirits...For now, it looks like our prayers are being answered....Tomorrow night should be a little trying, but we'll see....Have a great weekend....L.

Thursday, March 25, 2004 2:45 PM CST

Whew....DAY -8: I have been at home trying to squeeze a few months into a few days....We have been partying hard; celebrating Anna Gaites' 6th birthday! They grow up so quickly....I miss having a house full of babies....It has been incredible spending so much time with them....I didn't realize how much I missed them....They still pull me in every direction and drain every last drop of patience out of me, but I am so blessed to be their mom....
Folden started his first day of the transplant process on schedule....He is doing really well...I didn't see him yesterday....We sort of shifted our schedule around for a few days so that when things start to get tough we will all be rested and ready....I walked in today and expected a lifeless little fellow...But not my son...He is playing hard with his best buddy, Jim, (a volunteer who spends time with Folden each week). He is singing, laughing, and acting like most 2 year olds...His face looks a little different...Puffy, I guess from all the fluids....Otherwise, you wouldn't even know what's happening...I have been warned that things will get alot worse before they get better...We are all preparing ourselves....
I hope some of you will think about the walk that Folden III talked about....There is just so much need here....So much that can be done....Thanks for all that has been sent already....One of the nurses said that we have awesome friends....That is so true....We were able to share $500 worth of Target gift cards with the families here....That is so awesome....Several other wonderful things have been sent up here this week as well....You are all amazing....It truly makes a different in everyone's day....Thanks for tuning in and keep praying....Believe me, that is making the most difference.....Love, L.

Wednesday, March 24, 2004 11:52 AM CST

Hello everyone, another great day and tomorrow we get started with the chemo. Often lori and myself are asked if there is anything someone can do. Well, there is.May 1st is the Rainbow of Heros Walk. This is a walk to benefit the Duke PBMT Family Support Program. You can contribute either by walking and having sponsers or by simply donating to the walk. If you are interested you can call my office and speak to Marcie with any questions or to make a donation. My office number is 919-553-2238. Thanks for your help and support.

Folden III

Tuesday, March 23, 2004 4:45 PM CST

WE HAVE A THIRD LINE!!!!!!!!!!! The surgery went well except for the no eating or drinking before. IV is doing great and G-Rose brought the girls to see him and they are going home with Lori tonight for some mommy time. Thank you to everyone who has sent things up here. The gift cards Louisburg Harwood sent were like gold to these families. Also since yesterday two kids have gone HOME!!!!!!!!! One of them with the same leukemia folden has. Thanks for all the prayers and please keep praying. To everyone who has sent cards IV really enjoys opening his mail everyday. Also Aunt Marcelle thanks for the books, videos and fudge the kids are enjoying them and the parents are stuffing their faces. Thanks again

Folden III

Monday, March 22, 2004 1:45 PM CST

Hello Everyone....We're all getting charged up for the transplant to begin....However, it looks like it may be postponed again....hopefully, just for a couple of days....I think the 2nd line placement is creating some problems....Maybe that will be resolved soon and we can move forward...I am about to lose my mind...We have been here three weeks tomorrow and still we are no closer to being cured than we were when we got here...We have basically just bought some time....I don't want them to do anything in a hurry and put Folden at further risk for serious complications but on the other hand...I am ready to get this over with....So much is happening on 5200 that keeps me in knots....In one room, a mother is mourning the loss of her precious son and in another a family is celebrating the end of a successful treatment....It is unbelievable what a person goes through on this unit....Folden is doing really well....Right now, he is making playdoh cheeseburgers and has icecream and chocolate all over his face...Sounds like any other kid, doesn't it......He looks great and is able to ride his tricycle down the hall...He is a little stronger each day and seems to be okay with where he is....He laughs alot....That keeps me centered....I just want him to keep laughing....He is one amazing child.....I will let you know what the new schedule is as soon as I know...As always, Thanks...L.

Monday, March 22, 2004 1:45 PM CST

Sunday, March 21, 2004 6:32 AM CST

Hello everyone. IV had a great day yesterday as well as a great night. I enjoy when I get to stay with him. Last night we were up till 11:00 building a big, big house with his leggos. Thanks again for all the prayers and support. Even though we are moving forward we are getting scared about what IV is going to have to go through. Yesterday Josh passed away, so the reality of what can happen is really setting in. Please continue to pray for all the kids and right now especially josh's family. His website is like foldens except his is /nc/josh.

Thanks again
Folden III

Friday, March 19, 2004 7:40 PM CST

Sorry for the delay in updates... But break out the dancing shoes, bone marrow was clear!!!!!!!!!!!!!!!!!! We will start the induction for the trensplant tuesday and transplant will take place nine days from then.. Thank you so much for all the prayers they are without a doubt working.... Keep praying for all the kids on the floor and everyone says thank you for all the goodies everyone has sent!!!!!!!!!!!!!!!!

Folden III

Wednesday, March 17, 2004 11:54 PM CST

Hello Everyone.....Well, the plan is to do a bone aspirate on Friday...If no cancer cells are present, we will begin the countdown to transplant...If cells are present, the doctors will determine the best course of action for that particular situation....Pray for a good outcome and wisdom for the doctors to make the right choice....We are all doing well right now...Folden is recovering nicely and we are even permitted to leave the unit....He took a bath tonight....First one since surgery.....Apee visited today...She always makes him smile....See his new pictures...He is not sleeping well at all..We think that maybe he still has some uncomfortable spots and we are working on it.....It is wonderful to see food, toys, and other needed items being sent up here....It is incredible actually....I can't thank you enough....As soon as I get the results of Friday's tests....I will let you know....Love, L.

Monday, March 15, 2004 1:24 PM CST

Hello Everyone....I think all of us had a nice weekend...I sure missed those girls...Seeing them was wonderful.....Folden is doing well....We were a little worried about his new sites bleeding...but after a few platelets, that was finally under control...He is up a little more, he has taken a few steps and he is much more comfortable moving around....He is not on any pain medicine and he gets unhooked here and there which makes everything much easier....I actually got to hold him for a while last night...If you can imagine---It felt like the very first time he was put into my arms....I just wanted to kiss him all over and thank God that he is still with me....He is fighting so hard...Thank you all who have sent food and books and so on for the families here....Some of the kids thought is was Christmas as the nurses pulled the stuff into the unit in wagons....I can not thank you enough for what you are doing to make this place a little better for everyone here...I am so proud to be a part of it all, you just have no idea....The cards and pictures that the kids are sending are just precious....We have really enjoyed all the artwork...Folden's room looks better everyday...He can never wonder if anyone cares about him....Again, I am so grateful....Even the smallest things make such a difference....We finally met our primary nurse...She is awesome, too....I would put her in the exceptional catagory....I do miss Andre, (He is off until Friday) and Sameeya...I don't know where she is but don't worry....Folden has a lot of people up here taking care of him....He is getting unbelievable treatment and Ampa is standing guard to make sure everyone is on their toes....We haven't had a nurse we didn't like yet....We are waiting for Folden's counts to recover to see what his next step is....Pray as hard as you can that Folden is in true remission and we can move forward with transplant....That would be wonderful....Have a great day and thanks for tuning in....L.

Saturday, March 13, 2004 6:59 PM CST

hello everyone. Sorry for the delay in updates but lori has been spending some quality time with the girls. Folden IV has continued to improve and I was able to get him standing last night and hope to have him taking small steps by tommorow night. Wilson and I have come back to the hospital for the night and g-rose will come and get her after they eat. i wish she could spend the night with us because she is probably the best medicine he can get. Thanks again for all the items everyone has sent for the families here. And as always thank you for the prayers. Also please pray for lindy, she has started her radition treatments.

Folden III

Thursday, March 11, 2004 5:01 PM CST

WE HAVE A LINE!!!!!! The surgery went well....It took less time than anticipated....They said Folden did really well....So, we are back on track.....He feels ok and all of his labs are looking great...Maybe he will start eating and get stonger; I haven't held him since we got here.....I am looking forward to the weekend...I haven't seen the girls since Sunday.....If you are thinking about donating blood products...Please do...Folden has had 4 platelet transfusions today....He will get them most everyday for a while.....Thank you all again for all the stuff that is being sent up here...Its amazing.....and everyone seems to enjoy it....Thanks Apee, Mrs. Diana and East Clayton kids for the poster and all the food....WOW! His room is beginning to look kinda neat....Love, L.

Wednesday, March 10, 2004 6:36 PM CST

Hey Guys....First of all, thank you so much for the food we have gotten in the last couple of days.....We have REALLY enjoyed it and everyone in the unit seems to enjoy it as well....I am so proud that you guys are on our team....You have made this journey so much better.....We received a ton of cards today both in the mail and from the school....It is like Christmas....It sure lightens the mood around here...Again, I thank you...I realize everyone has their own battles each day and to stop and think of us is just incredible....

As for Folden, he has had a super day. The surgeon came by today to let me know that the procedure had been postponed until later in the evening so they cancelled it and moved it to tomorrow. Folden can eat today and will be NPO tomorrow morning which is not fun but easier than keeping juice and stuff away from him all day....I was really impressed that the surgeon took time to come by and tell me...Usually, you wait and wait and after struggling all day through starving your child they tell you its been cancelled....That can really upset a person who is already on the edge.....Otherwise, he is doing well...We were able to put him in his stroller last night and look around the unit...He hadn't even been out of his room other than going to and from PICU. He seemed to enjoy it....Folden III is staying tonight in order to be here tomorrow for surgery....That will make tonight easier...I always feel like a huge weight is lifted when Folden is close by....

Well, you guys have a great day....There is so much to thank you all for...I get so overwhelmed when I think about it......I just hope that you will all be blessed as much as you have blessed us....It really does make that much of a difference.....L.

Tuesday, March 9, 2004 1:13 PM CST

Another day that didn't go as expected....Folden slept well last night and I actually did, too....I woke him up this morning for the procedure but when we got there...everyone was running out....One of the children on the floor was coding...I lost my breath....My heart aches for that child and his family...I never could figure out what happened but I think that they were able to stabilize him...I hope so...That delayed us quite a while because when everyone came back, the doctors had to finish rounds and prepare for Folden's procedure....It was almost 12 when everything started...Folden had just begun to ask for juice which makes his mom very anxious....I don't like to see him want anything....The procedure should have taken about 30 minutes...But not on Folden...1 1/2 hours later they came out to tell me that he was doing well but they were having trouble getting the line in...So, Ampa and I sat in the PICU waiting room and listened to a family that was visiting their child who was at the end of life...He looked to be about Folden's age...I could see his crib right across from Folden when we were in the PICU...He had some rare, genetic breathing disorder and was on a ventilator....His parents were in his room stroking his head and talking to him...I never saw him respond...They were about to sign a DNR order and were struggling with themselves wondering if they had done everything possible for him.....As I sat there and listened to his grandmothers talk with their friends, I thought about how lucky I am that Folden at least has a chance to beat this thing....It may or may not be a good chance, but he's still here and we still have something to fight for...Eventually, the nurses came out to let me know that they couldn't get the line in. It looks like we may go back to surgery to try and insert some other kind of line....I don't even ask the medical names anymore...Just what time am I supposed to be there....All in all, today went well....Folden is strong and woke up so happy...He actually ate a little mac and cheese...more than he's eaten since he's been here....I feel better today than yesterday....That is an accomplishment in transplant world....That is actually the goal for everyone here.....Thank you all for the cards and emails. I like it when the postman stops by our room....Also, I checked into some of the needs for the families here....Gas cards/coupons, Walmart giftcards, Grocery store gift cards, high gloss photo paper-4x6, video store coupons, restaurant coupons, movies, (DVD and VHS), parking passes, toys.....Thank you for keeping up with Folden....Love, Lori

Monday, March 8, 2004 6:51 PM CST

Not a lot to report tonight...just another stressful day...Since we weren't able to get the central lines in from the beginning, we are using a small line in Folden's groin....It is only good for a few days so we have been trying to get a PIC line into his arm or feet....The first nurse, (not from this floor), didn't do so well...She was unorganized and not very pediatric friendly....She didn't get the line in and we called a nurse from the PICU...She is supposed to be the best....After a few very compassionate tries....She was unsuccessful as well....So, since he had all the pain meds and sleepy meds he could have and was still fighting, he has to be put under again tomorrow so that they can get the lines in...My stomach is in knots thinking about it....This, too, is supposed to be a simple procedure....We'll see....Otherwise, he is still mildly uncomfortable...We have figured out that the itching is coming from the pain meds...When they reach a certain dosage, he starts itching...I have tried not to use them unless absolutely necessary....I can't say enough nice things about the nurses here...Everyone knows that I truly love the UNC nurses....They are special friends...But I have been extremely impressed with the nurses here....We have had several...Andre' was with us all day today....He is Canadian but born in South Africa...He has no sense of smell, loves basketball and is absolutely incredible...I feel fortunate to be able to get the care for Folden that Duke and UNC provide....Folden's blasts are down to 5%....That is good...It means that the last drug (mylatarg?) that we received is hopefully working....We were at 57% when we came in for line placement....(I'm sure you know but I will remind you anyway...Blasts are what they look for in his blood counts that are usually cancerous cells...) Pray for the best....Someone left the unit today...I didn't get to meet him, but I watched as the whole unit threw confetti in honor of his big day...and the Duke basketball team came through as well...Folden missed most of the excitement because he just doesn't feel like doing too much, but it won't be long....Folden's aunts sent dinner tonight which was greatly appreciated.... Thank you all for your continued prayers.....L.

Sunday, March 7, 2004 7:52 PM CST

I have to say that this weekend has turned out better than expected....The girls and I were able to have some mommy time periodically throughout the weekend....We went to the playground at the apartment, baked brownies, slept a little late, watched TV, shopped....(Our apartment is near a Super Target...Does it get any better????) We explored our new little community which includes a pool...They really like that....The baby is doing well...He is a little uncomfortable when he is moved or when he coughs..But I think overall, he is okay...Most everyone that is allowed to visit was here at some point...He enjoyed time today with Nana, Ampa and GeeRose...The nurses think he is loved too much....Thank you for all your inquiries about sending food and toys to the nurses, parents and kids....I have seen so much on this floor already...My heart aches for some of these kids...I am thankful that my door is right in front of the entrance...Some days I just can't take seeing what has to be endured up here....Robbie, (Lindy's dad) stopped by to visit while Lindy was in clinic...I missed it but I could tell everyone was glad to see him....We have had other visitors but no one can come through to the unit....So please, put your energy into your own family and doing things that make a difference....I thank God for each and every one of you and I know that if I needed you here, all I would have to do is ask....Right now, just keep praying...It is so obvious that it is working....Folden is doing so much better than he is supposed to be...I love you all....L.

Sunday, March 7, 2004 7:52 PM CST

Saturday, March 6, 2004 6:02 PM CST

Today's entry is going to be a little shorter because....I have an alert little boy to play with....Folden feels so much better...He is eating, sitting up, moving around....It is unbelievable.....I guess those prayers are working...Folden is in good shape!!! We have made it over the first hurdle...Everyone is surprised at how well he's doing.....Did you read Mary Louise's great news! That is so wonderful....I was so happy to read that you all are taking time to make a difference....Most everyone on 5200 is from another state...be sure to say a little prayer for our neighbors...I haven't had time to meet alot of them, but I am sure I will....Anything you want to send here is surely welcome....Folden 3 comes everyday and his office is a good drop off point Monday through Thursday....and my direct address and room number for mail is listed below as well.....Thank you, Thank you, Thank you for your prayers....Folden has made a complete turn around since yesterday....Love, Lori

Friday, March 5, 2004 3:53 PM CST

Another day....It has not been a necessarily good day...Folden is still very uncomfortable and agitated. He slept okay last night, considering his situation. He settled down to sleep and then he started itching...He couldn't really sleep well because of the itching...They gave him everything to try and stop it but nothing seemed to work...Today was dressing changes...That is pretty much ripping tape off of open wounds and adding alcohol to finish it off....He has to be medicated to shift his pillow and change his diaper so you know the dressing changes hurt...Oh..and they also had to weigh him which required us to pick him up....He begged me not to pick him up....Hard day....Folden III and the girls are here...It is always better when they are here....All the nurses are very nice...they work hard for Folden. I haven't quite found my way around yet...but I will...I have met a few special people already...A lot of rare stuff here...Things I've never heard of....I never knew there were so many monsters lurking out there....Folden started the antibody thing today. I don't really know the best way to describe it but it is supposed to hold us over until transplant can start...Please pray this medicine will run through Folden's body and kill the leukemia....That would be a blessing...He needs a break...Although, everyone is surprised that Folden is doing as well as he is with this complication....No one on this floor has actually seen this happen before and I know all the doctors involved were really shaken....I am so sad about it because it not only delays everything that he needs but he can't move...He can't get comfortable...He can't eat...nothing is right for him...I have seen him have some bad days but this is tough...I hope things improve a little by tomorrow...He needs to sit up and readjust to prevent problems with his lungs....Pray for his comfort...Also, thanks to those of you who sent cards and drew pictures...Everyone here decorates their door and now we have a few things to put on Folden's...Should any of you run across anything to add, please send it to me....Also, the parents have a lounge here and occasionally people leave community food for all the parents and nurses to enjoy....(I promised I would find things that you could do)....We really enjoyed the bagels that Sonja, (a very special nurse from UNC), brought over...We ate those things all day long...and a few of the nurses here couldn't resist either...That was our first real food since we were admitted...Thank you all for being there...It has been wonderful reading your entries and getting your emails....It means so much to us all....L.

Thursday, March 4, 2004 6:54 AM CST

You know...I have nearly worried myself sick in the last few days....I realized that it didn't really accomplish much since I was worried about the wrongs things all along...There is no "sure thing" with Folden...This complication is rare....but everything else that has happened to Folden has been rare....Rare cancer, rare relapse.....and on and on....The doctors seem a little shaken, I guess...But don't worry about us...We are all ok and everyone here has been more than nice....Very genuine and concerned...I know we are in good hands....Thank you for all your entries....I am not quite sure that I deserve all the wonderful things that you have written...I feel like I have thrown Folden into a lions' den and held him down while they feast on him....He is very uncomfortable right now....Folden 3 stayed with him last night and I slept...I feel a little better today and a little more prepared to face the task at hand....Since he is in the PICU we have to leave during shift change....We have never left him before, so that is hard...But, they have been kind enough to allow us to have our room on the 5th floor...Folden 3 is sleeping and I am trying to stay busy until I can get in to see him...Hopefully, some of the tubes will come out today and he will be moved to his bed in the transplant unit....As for the transplant, his treatment has obviously been changed....Our course now was actually one of the options from the beginning...I can't help but think that God intervened and is showing the doctors the treatment that Folden needs to beat this thing....Regardless, I feel good about the whole change of events....I am not happy however about him having to stay here extra time, but we will do whatever necessary to take him home...Please, please say a prayer for Folden...He is really uncomfortable and a little frightened.....I am at present holding it all together but I'm not making any promises....Love, Lori

Wednesday, March 3, 2004 8:01 PM CST

Where do I begin? Our surgery was moved up this morning, so we didn't have to battle with Folden about breakfast. He went under well but somewhere in the middle of surgery there was a tear in the vein that they were using to insert the broviac...They had to actually cut through his sternum to repair the tear...Folden is in the Pediatric Intensive Care Unit (PICU) with tubes full of blood and other stuff running in and out of his little body....Just when you think things can't get worse....He will be there for a day or so and yes, this postpones transplant for about a month but we still have to stay here until then because of infection and other problems....So, essentially we have had another 30 days added to our 100 day sentence....Believe it or not, I think a few good things have come out of this whole thing and I will try to give you a little more information about it all later....Folden 3 is in the PICU with Folden 4 and is waiting for me to relieve him so that he can get some rest....I just wanted to let you all know where we were....I'm sorry I don't have all the addresses and numbers for you...Today has been a whirlwind and time to settle in has been quite limited....Thank you all so much for your entries...And a big thanks to Dr. Blatt and all the wonderful nurses at UNC for checking in...I will have time later for more...Right now, I need to get back....Love, Lori....

Monday, March 1, 2004 3:38 PM CST

I talked with the doctors today and it looks like we are definitely on go for Wednesday....It seems that Folden has had all the chemo prior to transplant that he can have and eventhough he is not in remission, we have no choice but to proceed. I think it was decided between the UNC doctors and the Duke doctors that more chemo would place Folden at risk for central nervous system damage. The doctor at Duke seems a little hesitant which, you know, scares me to death. I asked if any of this changed his chances...His reply was that not being in remission dropped Folden into the 40% catagory rather than 50%....I am not quite clear on how it all works and why the change, but I am looking into it....We really do have a good doctor. Dr. Martin is a father himself and has made me feel somewhat better in different instances by speaking to me as a father and not as a doctor. I think he will do everything in his power to send Folden home without the monster that is lurking inside of him. Please pray that Dr. Martin has the knowledge and the capability to make Folden well....Meantime, we will go to Duke tomorrow for labs and maybe a meeting with another doctor on the team....We will come back home for a little more family time and then off to Durham....We will probably stay there at the apartment in order to be ready for the line placement on Wednesday. I am presently trying to stay busy...which is not hard as I will not be coming back here for a while and there is so much to get done in order for things to run smoothly for the "new management." Please be patient with my family should you run into any of us....We are all a little "sideways" with all of this...Everyone is trying to carry on with daily activities however our thoughts and our hearts are tucked tightly into Folden's little pocket. I am so fortunate that the girls have two of the most incredible teachers possible. Both have really helped me keep the girls from missing anything and I feel confident between them, Nana and GeeRose, my girls will be just fine...I pray Folden will be as blessed.....I will post the addresses as soon as I get them...I know we will be in Rm 3 in the unit....I also have a "schedule" for each day that I will forward as well...It will help us all to keep up with what is going on....Thanks for tuning in yet again....I hope you all will keep me posted on what is going on in your world...Please do not hesitate to email me...I have sort of lost touch with everyone since this whole mess started...I guess I have just been trying to spend most of my time either with Folden and the rest of the family or getting ready for our big adventure...I promise to do better once this is behind me.....L.

Sunday, February 29, 2004 2:28 PM CST

Ok...Everybody take a deep breath....Folden does not have cancer cells in his spinal fluid...This is awesome...!!!!!! That means most likely no radiation...This is a huge deal.....A really huge deal....The CNS disease has been a thorn in our sides from the very beginning....Thank God...The CNS is gone.
SECONDLY.....Folden has once again relapsed...The cancer has given up in his spinal fluid but it is definitely attacking his bone marrow......I was a little worried about this at first but I think that it was expected.....So...we are all dealing with this news....Just pray that the Doctors can handle this strain of cancer that keeps attacking Folden....You would never know he is sick...We went to the beach and he hung right with us....He has a ball doing whatever there is to do....and we all love him so much....even the girls act differently with him...

So...here we are....standing at the gate of transplant land...The doctors are going to check him again on Tuesday and if the cancer cells in his bone marrow have not exceeded a certain percentage, we will be admitted to Duke on Wednesday...If they have passed the cut off, we will go back to UNC for another round of chemo and then back to Duke in a month....Pray that the right path is taken...And my prayer is for each of you to find encouraging words to send us and for lots of roses to stop and smell....L.

Wednesday, February 25, 2004 7:54 PM CST

High today: Folden's IV stayed in throughout all the necessary lab draws, eventhough they told us it probably would not work...

Low today: Only 7 more days outside of the hospital.

Today actually turned out to be a not so bad day. Thanks for all the prayers that helped make that possible....We have really been lucky with the nurses at Duke...They are very good with the blood draws..I have been extremely pleased with their patience and skill. All the testing went well and they were even able to move the pre op to an earlier time so that we could leave a little sooner. I want Folden to have every possible minute at home that he can....He was so brave...He takes it and takes it and when it is over, he will wink and blow the nurses a kiss while they are scraping me off the floor......He is just incredible....He does much better than I do....Tomorrow is a bone marrow aspirate and a spinal tap...He has already had several throughout the treatment...The only hard part is not allowing him to eat or drink for several hours...The results of the test will determine whether or not Wednesday is admission...They promised that they would try to get the results quickly so that I will not fall apart waiting...Otherwise, weather permitting, we will be headed to the beach for one last ride on the big, big boat before the big day....

I do appreciate all of you being a part of our journey...I know that I may sound a little down at times but I feel like that is understandable considering the circumstances...I am certain that I will get worse before this whole nightmare is over...But don't think I have given in....There will be no white flags waving around here....We are going to follow this thing through and I will do everything in my power to see that this child comes back home with me....If I seem uneasy, just know that I am trying to write it the way I see and feel it....It is not sugar coated and it is not dramatized....This is my life...and eventhough it is not ideal...I would not trade it for anything...I still think I am the luckiest person in the whole world....I have an amazing family...unbelievable friends and I am a much better person today than I was before Folden was diagnosed....I only hope that I can make the right decisions for him and be the mother that he deserves....Thank you all again for being a part of it all with us....L.

Tuesday, February 24, 2004 8:00 PM CST

We are still going to clinic everyday....So far, it hasn't been so bad...The anticipation is worse than anything.

Folden IV is such a trooper. He lets them know that he is upset and then when it is all over, he is right back to his happy little self. Tomorrow will be hard because they will have to start an IV....Those are hard, but we have been pleased with everyone at Duke. The nurses have been good about getting the vein on the first stick. That makes things so much easier for all of us. The docs have added a visit on Thursday because there is some concern that Folden has relapsed again. Now, don't panic! They tell us that it really doesn't matter...However, if the percentage of cancer is high, we will have to go back to UNC for another round of chemo and then start transplant at a later date. So, pray that the cancer is still in remission or at least at a minimum....They brought up about every possible concern today. There are quite a few...mainly infections...He has been tested for everything from Herpes to Chicken pox to West Nile virus.....He is pretty much normal on everything...The scary ones are the ones he will get after the transplant....They can really change the course of the whole thing is they can't get them under control...The part that worries me most, I guess, is relapse...It is concerning that Folden relapsed so quickly...That is not good....Dr. Martin says no one goes in without something against them and still 50% walk out...I hope that Folden is on the right side of that statistic....So many of you have told me that Folden's destiny was planned long before he was born and that I should not worry because God is in control...I hope you know that I am trying so hard to believe that....and to follow that...but I am so scared....I am working on my faith....I am just not sure that I have enough to get me through this thing....

Please sign the guestbook....or email....We are all beginning to come unglued a little...

We rented an apartment today....It is about 5 minutes from the hospital...I will post all the addresses and phone numbers as soon as they are all available....Please say a prayer for Folden....He really is a special child....L.

Sunday, February 22, 2004 6:46 PM CST

Hello everyone. This is Folden III. I took friday off and me and IV went to the beach for some daddy time. We rode the big, big boat and did basically whatever we wanted. We were finally blessed with some good weather. One day we spent a couple of hours by the waterfront feeding the seagulls. They were eating french fries out of our hands. IV was just amazed. Duke has moved our date to the 3rd of march so we may get to go back next weekend. I can't hardly believe what he is about to face. Most children when asked who their heros are they say their daddys, but This time the hero to me is him. Thanks again for all the prayers and support and keep praying.

Folden III

Friday, February 20, 2004 7:22 PM CST

Hello again...So far everything is still the same except the admission date has been moved from March 1st to March 3rd...We are still hoping to be on the upswing by Anna Gaites' birthday...(March 26th) Folden III and Folden IV went to the beach to test drive a boat...They left last night and were on the water all day today...They will return tomorrow morning...Folden III says the baby is having a blast....We are all going to Bullwinkle's for my niece, Aspyn's, birthday. Wilson and Anna Gaites are at her sleepover now so I am home alone....Odd feeling...I rarely get a night off...by myself....You would think I would be taking a bubble bath or reading a book or something...but actually, I miss everyone so much, I don't really know what to do with myself....I am glad, however, that everyone is somewhere doing something that they enjoy. I hope you all are somewhere doing something that you enjoy...Please continue to remember Folden and all the kids at Duke and UNC....Also, please contact your local American Red Cross and ask about donating platelets...It is so important in the fight against cancer...for adults and children...All types are needed...and all communities are important...very important....Hispanic, African-American, Asian, Caucasian, etc.......and any combinations....Please think about it....In the meantime...Please sign Folden's guestbook....It really helps to hear from everyone....L.

Wednesday, February 18, 2004 2:51 PM CST

Hello Everyone....I have just gotten Folden's schedule for the transplant....It seems he will have something at clinic nearly everyday next week and admission on March 1. I feel like I am going to be sick. I have waited for what seems like an eternity for this to take place and now I feel like I just can't stand it. I know it will make him better but the distance between now and his discharge date is almost too much to think about. He is having such a good time and we are all trying to squeeze a lifetime into everyday. He is so amazing and to think I have to stick him in a 10X10 room, (Maximum!!!) for an unspecified amount of days is so far from what I want to do......I guess its time to start getting my game face on...suit up and get ready for the battle...I love him so much, I just want it all to go away and let him just live.......Pray for strength for Folden to fight this disease and patience for his family as we face the battle ahead...Pray for tolerance and healing for all the children...Thanks again for tuning in....L.

Monday, February 16, 2004 8:47 AM CST

Hello Everyone....I have a little news....Things at Duke are moving right along and they have again, tentatively, scheduled us to have broviac placement done at UNC on March 1st and transplant a day or two afterwards...We'll see...UNC has put him on oral chemo because of the delay and we would ideally like to keep him in remission. Otherwise, things are going quite well...I am continually amazed at all the new friends we have made and how people have responded to our situation. Everyone seems to care so much...It sure makes it all a little more tolerable. We spent Valentine's weekend at the beach. We all had a great time just hanging out. Folden III and Folden IV were able to ride the big, big boat. Folden IV loves boats. He would live on one if we would let him...Since we thought we were going to get more snow, we let all the kids and a few of their friends sleep over...Obviously, we were wrong...But they are all still here having a blast. More later...L.

Wednesday, February 11, 2004 11:34 AM CST

Hello Everyone....Still not a lot to report. We got our results back from the tests yesterday and Folden remains in remission....This is good because it means that he still responds to the chemo, and he will be healthy going into transplant. We still don't have a date but we are going to Duke tomorrow for a few more tests. There are several procedures that have to be done before the actual transplant. He is getting stronger everyday but I don't think he could be any happier. He loves life and is living it to the fullest extent that a 2 year old can. This morning he watched the landscaping guys move dirt around outside. He got on his little tractor and tried to "help." Then, we rode the 4 wheelers back into the woods and around the pastures looking for deer. Of course the deer were "sleeping" but for us it was a great adventure. I am so glad we moved out here. I lived here over 20 years and never realized how wonderful it is. Everything is so beautiful..It sure is good to be home.....
Have a great week and a perfect Valentine's Day...L

Tuesday, February 10, 2004 2:06 PM CST

Hello Everyone...Just to clear up the confusion...We are still at home...We have not been to Duke yet, and we are still waiting for a bed....It looks like it might be the end of the month....Today, we went to UNC just for a routine check up...Since we don't have the lines in, we have to stick him to draw blood...That is no fun. IV's are even worse. Fortunately, we had a good nurse and she was very gentle and caring with him. When they were finished, Folden said, "Let's get out of Dodge, Mommy." ...and we did...He was happy and making silly faces at me by the time we got to the car. It was good to see some of our old friends....Matthew, Anna, Jerry and so on...all of them seem to be doing very well....There were a few new faces. That always makes me sad...We are waiting for blood counts which actually doesn't really matter at this stage of the game...just good to know...After we left, he wanted to stay with GeeRose...and he did. I have decided that worrying about when we go in is really pointless...We are all just going to keep enjoying the time together that we have...He feels good and the weather is bearable...Whenever they decide to admit us is when we will worry about it....For now, we are off to the beach to ride the big, big boat....L.

Saturday, February 7, 2004 7:27 PM CST

Sorry that I don't have a lot to say today...Nothing is really happening, which in our world is wonderful...Its Wilson's birthday and we have tried to really celebrate it...Being able to turn a year older is such a blessing...Folden IV was well enough to slip in to Wilson's skating party for just a few minutes...He enjoyed all the excitement and noise...Everyone seemed happy to see him...He is so happy and acts as if he feels really great...He is so much fun to be around...He makes us all feel so good....Thank you all for being a part of our lives...I have tried to put into words how it makes us feel to see all the entries in the guestbook, to hear that you've asked about us or have been a part of something done for Folden...It is all so overwhelming-and there just are no words to fit......The support you have given us keeps us going....Before I get too weepy, I will go...Did you check out Lindy's website? She is doing spectacular....Time for me to go...Folden wants to watch "Monsters, Inc."....That means he's getting sleepy...Have a great week....L.

Wednesday, February 4, 2004 6:39 AM CST

Hello Everyone....Everything here is going well....Folden is having a really good time, I think...He has access to every possible toy a kid could want, as well as a few adults. He has enjoyed the tractors and Ampa and GeeRose gave him a Gator...powerwheels of course, but to him it is bigger than life...He is so much boy...Much different than his 2 sisters. Yesterday was such an ugly day, we decided to get out...I took him to the pet store to see the fish...We could have been deep sea diving and he wouldn't have enjoyed it more....He was so amazed by the fish tanks...."Look Mommy, Fiss....." I couldn't bribe him to leave...Finally, after a while, I was able to coax him out...He said, "Bye-Bye Fiss...See ooo yater!!" It has been so much fun showing him things....I think I stayed so wrapped up with the girls, I thought I didn't have time to smell the roses....With Folden, its just part of the day...to watch him explore the world...its so much more spectacular through his eyes...and he finds marvel and wonder in the smallest things...I want this whole thing to move on so that we can watch the world from the other side of cancer...But Duke has postponed our date....Evidently, all the beds on the transplant unit are full right now. They said maybe two more weeks...I was very disappointed because the sooner we get in, the sooner he gets better and the closer we are to coming home and getting our lives back...Right now, we are always on stand by...waiting....
That's about all for now. Hope everyone has a wonderful day....I know we will....L.

Sunday, February 1, 2004 3:45 PM CST

Hello everyone, Sorry for the delay but we just got home from the BEACH!!!!!!!!!!! Last week the weather was so bad my office was closed all week and when we went to schedule patients for thursday and most wanted to reschedule we decided to go to the beach. Folden had an awesome time. Our friend Johnny Smith let me use his big boat to ride folden on and he rode and rode and rode. All he would keep saying is ride big, big boat daddy. Looks like when this is over I'm going to have a fisherman on my hands. So far everything is great and thanks to Johnny for letting us use his boat. Check out new pictures.

Folden III

Monday, January 26, 2004 8:17 PM CST

Isn't the snow beautiful...I know it's inconvenient but Folden sure does love it...We have to drive through it periodically throughout the day so that he can make tracks...He is really having a great time...We have tried to do it all....He has spent alot of time on the tractor and he has even had a chance to spend the night with GeeRose and Ampa...after loads of caffeine and chocolate--he kept them up until morning playing hide and seek...No one seems to mind....We have a tenative date...February 9, Folden will go to UNC for broviac placement....We should go to Duke within a day or two...no more than a week following...It seems like a long time but it gives us time to spend another weekend at the beach and to celebrate Wilson's 7th birthday...Hopefully, by Anna Gaites' birthday in March...we will be on the upswing...We have gotten alot of questions about the actual transplant...I know just enough about it all to scare me...but basically what happens is: Folden is given chemo for 4 days that will completely wipe out all his bone marrow and hopefully whatever cancer is still lurking and then immune suppressive drugs to help prevent his immune system from recognizing that the new cells do not belong to him...On about the 8th day, they will hang a bag of the cord blood and it will run through his broviac just like a blood transfusion--it takes about 20 minutes.....sometime shortly after, his body will experience the side effects of the chemo and he will not feel well...Infection is one of the biggest worries because during this time, his body has nothing to fight with...so a common cold or a bacteria that you and I destroy everyday becomes life threatening to his weakened system...also, you worry about the body rejecting the cells...with cord blood, that is not as common as it is with an unrelated donor...Within a week to a month his body will hopefully begin to grow the new cells and he can begin to fight off the infections...Those of you who have been following Folden from the beginning will remember that the infections that he has gotten have been our biggest threat...we have had a tough time with a few of them....Folden will go to an apartment near the hospital as soon as his counts reach a certain point and he will be there until day 100....He will be a little safer at this point but will not be 100% for about a year...That seems like about enough info for now...I think about it too much and I get worried...ONE DAY AT A TIME.....Folden is doing really great today...He is so happy and he feels good...He has only minor complaints but overall is in good shape....I will be happy to see him on the other side of this...back home riding the tractor with his dad, playing hide and seek with his grandparents and snuggled up safe and sound between his sisters...Thank you all again and again and again for listening...You have all done so much for my family...Your entries in the guestbook keep us going...your prayers keep us strong...We love you all....L.

Friday, January 23, 2004 11:34 AM CST

Not a lot to report...Things seem to be moving right along...All Folden's scans came back normal other than having a cold....He is still in remission which is an incredible accomplishment...However, it really doesn't affect the transplant process....It just means that he responds to the chemo. We still have a few more tests left to do and UNC will put the broviacs back in shortly before we are admitted to Duke...Otherwise, we are just getting things in order and waiting for the call...

Today, he is out riding tractors with Ampa and GeeRose...He really has a great time whenever we are not in the hospital...That is what makes it so hard to go back...

Anyway....you guys have a great weekend and I will update whenever more news comes in...L.

Wednesday, January 21, 2004 8:43 PM CST

Whew...What a day....Folden had an appointment at UNC for a routine checkup...The doctors just wanted to keep a check on him until we are officially admitted to Duke...However...since we were there, the docs decided we should go ahead and get some scans and preops out of the way...We (me and Ampa) got there with Folden at about 9 and left a few minutes before 5...It was awful...They can never get an IV going so he looks like a sponge from all the needle sticks...He was so upset...He wasn't allowed to drink anything until right before we left, plus he has to be held down and being a part of all that weighs heavy on me and Ampa. (I just hate cancer)....Otherwise, he is doing well...Now, we just wait for the date...I feel like we will go in after next week...Did you check out Rebecca's mom's journal entry? She is really doing well...And please don't forget Lindy...she is so precious....Links for both are provided at the bottom...I will update the address and phone info below whenever we are admitted...I will have my laptop there so I expect everyone to keep me posted on what goes on...For those of you who participated in the marrow drive...at least 3 platelet donors have already been called..Isn't that wonderful....It just made my day...Well, that's all for today....I can't thank you enough for checking in...Please sign the guestbook...It really does make a difference is our day...L.

Sunday, January 18, 2004 9:40 PM CST

Well...it looks like Folden is going to be a surfer dude...He has been matched with umbilical cord blood from a baby girl in California...Friday was a very long day but not nearly as bad as we anticipated...We met with everyone but the meeting with the doctor was particularly interesting...we were expecting the spill about the odds being against us but he was more positive than what we have encountered so far...He basically gives us a 50/50 chance...The scary thing, I guess, is the risk of infection during the period of time that they hit him with the high dose chemo and when his immune system starts to rebuild itself....I am still very, very scared....But this is the first time since the relapse that we have been hopeful....I try not to get too optimistic because last time we were hit so hard when Folden relapsed...I am trying to refocus myself and stay centered on the task at hand....you know...one day at a time...We should go in within the next two weeks...We visited the floor and saw the rooms...Oh my Lord...I thought the rooms at UNC were terribly small and uncomfortable...I have to use the restroom down the hall...there are no shelves, no closets, no anything...we have to take stacking drawers for our things and space for that is still very limited....We have a community refrigerator, about a square foot on a shelf in the pantry, and an oven....we can have outside food, but space is very limited....Talking about culture shock...We can decorate his room and his door...no flowers, fresh fruit or latex balloons...we can have cards, emails, mylar balloons, (I think), and about anything else that doesn't interfere with the comfort of the other patients....They are very, very strict...no visitors...the ward is on lock down because of the flu....You should see what you have to do just to get into the area....I am sure there are a lot of rules that we are not aware of yet...After Folden recovers from all that and begins to have good counts, we will be moved into an apartment near the hospital...we are looking into a few recommended by the hospital...we will stay there until the end of 100 days....If Folden makes it that far then we are pretty much home free....That is our prayer...for Folden to survive the whole transplant process without infection and without alot of pain and discomfort...to recover and live his life...I dread it so much...I am very scared..not only for the outcome, but I know this is going to be hard on him...He is such a little fellow to be put through so much...Pray for strength for us all...THE BEACH TRIP: Folden had such a good time...Folden III took him to ride on the boat, he played in the sand box, road his race car, everything he wanted to do...he was so happy to be there...You know salt water cures everything: sweat, tears and the ocean...We all surely needed that trip...We all seem to be renewed there....The girls were giggly the whole time, too....It was good to see my family all laughing together...For a moment, we all forgot... I will be updating more soon...We go back to UNC on Wednesday to begin the whole thing...I will keep you posted on our news.. L.

Thursday, January 15, 2004 5:38 PM CST

Hello everyone, all is well at the Lee household. Tommorow we go to Duke for our orientation. It will be an all day thing. After that we are GOING TO THE BEACH!!!!!!!!!!!!. Check out Folden's 2 year old picture and pray for no fevers this weekend. Thanks for everything.

Folden III

Tuesday, January 13, 2004 7:35 PM CST

Fortunately, there is not a lot to report....Folden is feeling well and playing like a normal 2 yr old....I am beginning to feel anxious about the whole thing...I have tried to keep my thoughts centered on today...but the upcoming transplant looms overhead....I know the odds but I also know Folden is strong...we have a huge network of friends behind us...I am so ready to get this behind us and begin to move on....Please remember Lindy Gupton in your prayers as she is scheduled to go into the transplant phase tomorrow...Her father and Folden III were childhood friends...Folden IV and Lindy seemed to be a little fond of each other during several of their hospital stays....(She's about a year old...and has neuroblastoma..) We feel like they will someday grow old together...

....That's about all for today...I can't thank you all enough for "tuning in"....It's good to see names of old friends and new friends in the guestbook...You can't imagine what that does for my family...Please feel free to email me as well....I look forward to hearing from all of you....L.

Monday, January 12, 2004 2:23 PM CST

Hey Guys....It has been a great day...Folden feels well and has had a really good time with his grandparents today...The girls missed school---I just wanted them all to have as much "good" time together as possible....They are all very tired, I think...this has all been very exhausting....We have confirmed our appointment with Duke for Friday....We should have all the details by then and we will certainly pass them on....Enjoy your day...L.

Sunday, January 11, 2004 6:18 PM CST

What a great two days since we have been home. We have done nothing but what we want to do. Folden is so happy riding the tractor and playing with his christmas toys. He is still having a hard time walking and it is strange seing him crawl instead of running. It seemed nice this weekend because a couple of times we forgot what we are going through. Pray for no fevers and god bless everyone for their support.

Friday, January 9, 2004 7:21 PM CST

Its offical, we're home. On the way home from the hospital I know everyone on the road thought we were out of our minds because we had the music loud and dancing in the car seat. Folden's favorite song is 'Hey Romeo' by Blake Shelton and I think you can hear it about 75 times during the ride from UNC to Princeton. As we rode down the driveway the snow made it look like something on a postcard. When we pulled up Folden got so excited because Ampa had a new JD tractor in the driveway he borrowed from a friend so I could ride Folden on it while it was so cold. (it has a cab with heat)We rode it until dark and then some more. Now he is downstairs with his sisters playing with x-mas toys he forgot he had. Thank you so much for the prayers and thoughts. Today someone said they didn't know how me and Lori keep it together, well I don't know it is VERY HARD sometimes but with all the support we have it makes it easier. GOD BLESS!!!!

Folden III...

Friday, January 9, 2004 7:59 AM CST

What a beautiful day....Folden is going to just love the snow....Please keep him in your thoughts as things with Duke are beginning to fall into place...I will work on some pictures during our break....L.

Thursday, January 8, 2004 1:17 PM CST

Folden is doing really well today...He's a little grumpy but very active....He is still a little week and is having trouble walking....otherwise all is well...We are all looking forward to him being home for a while....We have an appointment with the Duke doctors next Friday....I am looking forward to getting it all behind us....He has really been through alot this trip....I think about all the kids who have come through here before him....The ones who recovered and the ones who didn't...the kids who helped in the advancements of leukemia treatments so much that it has made it possible for Folden to have hope...I think about all the mothers who sat here before me....I still feel so blessed....Folden's being sick has forced me to see everything differently....Thank you all again for signing his guestbook....Gee Rose is even learning to use the computer so that she can read all the entries....I wish I could think of something profound to say...but I can't, so just know that today is a good day....there is hope...and Folden is going home tomorrow!! ...L.

Wednesday, January 7, 2004 7:59 PM CST

Oh what a day. Lori says he is becoming harder to keep up with. When I got to the hospital he was playing under the sheet making believe it was a tent. It is offical, unless something changes we are going home friday for about a week off until the trip to duke. Got to go,he getting unhooked from the iv pole for about an hour and we're going to hooters for some wings and cold beer. Just kidding problably an elevator ride and some m&ms from the cafe. Thanks to everyone for everything and keep folden and all the children in our prayers.

F III.....

Tuesday, January 6, 2004 7:59 PM CST

Hello everyone this is F III. Folden is doing great. Today he was able to get out for a while. He seems to be getting back to his old self and we have to watch him closer so he doesn't pull his line out. When I got to the hospital tonight I was greeted by a happy little boy playing hide and seek. Doctors are still saying we may get to go home on friday and they are calling for snow. If so it will be his first snow that he will remember. Grandpa found a friend that is going to let us use his tractor that has a heated cab so folden can ride it while home. Thanks everyone for all the support and prayers they are greatly needed and appreciated. Thanks, F III....

Tuesday, January 6, 2004 12:46 AM CST

Its a good day....I spent the night at home with the girls and returned here this morning to find Folden sitting up, blowing kisses and playing with his tools...(Gee Rose and Folden III stayed here with the baby)....His counts are continuing to rise and the word is that after his scheduled meds run on Friday, they will pull his line and he can go home for a while....a week to ten days seems to be the goal...During that time we will prepare for the big Duke trip-we should find out a little more by the end of the week....Thank you all soooo much for your prayers....We need them now more than ever....L.

Monday, January 5, 2004 8:37 PM CST

Today has been a pretty good day. We are definitely trending in the right direction...Folden is eating better and seems a little more active than he has been....His hair has been falling out so much over the past couple of days--today we had one of the nurses, Benjamin, shave his head...He is more comfortable now without all those pieces of hair in his eyes and mouth....He enjoys rubbing his head...he likes the way it feels...(Benjamin works with Miss North Carolina...we feel so honored...and he is an excellent nurse...) His counts are continuing to improve so I think we may be headed home hopefully by next week.....I have been told they will stop all the meds on Friday, pull the temporary line and if all goes well, we will be home for about a week and then the process for the transplant starts....I know that the UNC docs and the Duke docs have been emailing alot today...we are waiting for more information....You may never understand how incredible it is for me and my family to read the guest book and see so many entries...Old friends, new friends, friends of friends....You have all been so wonderful and I am greatly indebted....It looks like we made it through another hurdle...Please pray for a good match and for a successful transplant.....Love you all....Lori....

Sunday, January 4, 2004 10:51 AM CST

We are doing much better today....The fevers are occurring less frequently and we even have a hint of a blood count...The doctors are hopeful and should start reducing the medicines in a few days....He is sitting up and playing in his bed....Have a great day.....

Saturday, January 3, 2004 12:38 AM CST

Things have turned around a little for the better today....His heart rate and breathing have slowed a little, closer to normal...The only negative thing is that since he has had fevers off and on since Monday and the bacteria is under control--They have to treat him again for fungus, just in case....so we are running the really terrible drug that he reacts so violently to...but so far so good...He has eaten a little today..which is good....He is sitting up watching the Hulk....I heard the bone marrow drive was a great success---God bless everyone who participated.....L.

Wednesday, December 31, 2003 8:33 PM CST

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