Sunday, September 12, 2004 5:25 PM CDT

Taken from …’The Book of Sorrow and Pain’


“Photographs and Memories”
Jim Croce
Album: “Photographs and Memories” His greatest Hits
Date: 1974,1985
(Words changed to fit my own needs… sorry Jim)


I still see her pointing her finger at me… her lil’ head cocked to one side,’ It’s time for(s)upper… NOW!’ Little feet scurry down the hall to tell Momma her mission complete.

PHOTOGRAPHS AND MEMORIES
CHRISTMAS CARDS YOU MADE FOR ME
ALL THAT I HAVE ARE THESE
TO REMEMBER YOU BY

Memories flow when I type of her… then again so do the tears. In the last four years they have flowed too often and far too free.

MEMORIES THAT COME AND HIDE
TAKE ME TO ANOTHER PLACE AND TIME
BACK TO HAPPIER DAYS
WHEN I CALLED YOU MINE

I can still to this day remember, here was a three year old in a hospital bed. I stroll in with tears in my eyes. And she looks up at me with those beautiful blue eyes and… smiles. She doesn’t know the word ‘relapse’, But VP16 she does…’Aaaaaa- yucky!’ Nurse Lauren moves so I can sit down. Holding out my arms to her she comes to me. I swallow her in my arms and cry like a baby. A hand on my back… Nurse Lauren or Gail’s I don’t know which. All I really remember is that there was one too small to be either to wrap around my neck and adds her comfort to my back as well. She’s the one that has relapsed, she’s the one dieing, I’m the one crying; she’s the one comforting.

WE SURE DID HAVE A GOOD TIME
WHEN WE STARTED WAY BACK WHEN
MORNING WALKS AND BEDROOM TALK
OH HOW I LOVE YOU STILL

Today I went out to mow the yard… once very two months wither it needs it or not. Times like that… mindless work that is not mentally straining… are the worst. Let’s see…. Walk walk walk… pivot, walk,walk,, walk, walk, walk, walk… pivot… get the picture? This gives me far too much time to remember how she would watch me through the door. Driving to and from work: listening to music, how trying not to relate every thing in terms of Miranda… I fail miserably. My singing belongs in the shower. Or, layered under 20,000 watts of speaker power. Between the singing and blubbering I’m sure it comes out as some type of mating call for whales. Thankfully we’re not around an ocean. If and when we do go to Myrtle Beach… I don’t sing at all!!!

SUMMER SKIES AND LULLABIES
NIGHTS I HAD TO SAY GOOD-BYE
AND OF ALL THINGS THAT WE KNEW
NOT A DREAM SURVIVED

I can still see her in my lap with her trying to explain some type of this, that or other thing. I remember more of her intensity of explanation then I do of what she was trying to explain. I couldn’t help but smile and even chuckle. She took this as inattention and got my face pointed back to hers with her pudgy little hands. I asked,’ Are you sure?’ And as serious as a three year face could get she answered.’ YES! I’z Shore !!!’ This reduced me to tears… of laughter this time… and earned her even more hugs than normal.
I can see her still as if she was never gone. I can feel her body on me at night as we use to snuggle in a hospital bed. I can still hear her fake laughter and see her slapping her leg saying,’ Dat So fu-u-u-nny!’ I can feel her breath upon my neck as she naps while Momma is off to the store. I can still remember the smell of her skin as if it was yesterday. The smell of her or of the chemo/ steroids bleaching through: I can still remember them all. All of them were her. I can see her at the table doing her crafts. I can see her at her play kitchen whipping up some imaginary concoction… which we better not imaginarily choke down. I can still she her running to the bathroom, standing on the stool, flipping on the light, closing the door to go potty. I can remember when she wasn’t big enough to reach that light even with the stool and we had to do it for her. And when she was big enough she would most certainly let you know,’ I DO IT!!’ I remember these things… sometimes daily… and I want to keep remembering and I want to keep reliving things of her. For the one thing that scares me now… is forgetting it all. Then again if I forgot it all… I guess I’d forget that I am to cry as well.

Damned if you do
Damned if you don’t

PHOTOGRAPHS AND MEMORIES
ALL THE LOVE YOU GAVE TO ME
SOME HOW IT CAN’T BE TRUE
THAT’S ALL I HAVE LEFT OF YOU

Martin

P.S. Dedicated to: Leann, Elliot City, Md. You had hoped for more stories of Miranda… not quit sure this what you were bargaining for… I did my best.

Monday, August 16, 2004 9:20 PM CDT

I’m back after a month…

What has changed? Nope! She’s still in heaven and the rest of us are still here missing her terribly.

Dylan has made it to another Birthday in one piece. He turned twelve this past 12th. This was on a Thursday and on Tuesday he informed us that he only wanted TWO things for his birthday; And only two things. One was a Play Station Two. Of course if you get that you certainly need a game to go with it. So, that was number two. Who would have thought that finding one would be so hard? I started off at, where else, Wal Mart… much to my surprise they were out of them. Down the road to Target to purchase one (besides who would ever shop there, Right?) Lo and behold: They were out too. On to Circuit City to end the search for the all too ellusive PSII. And game. Can’t for get the game. I purchased their next to last one. As it was, I left Target thinking I would have to give him a card with an I.O.U. in it. Birthdays and I.O.U.’s do not go hand in hand. Heading home it dawned on me that all the college kids getting ready to go back to school had probably scarfed them up. Some thing in that, if true, is just wrong. College and PSII ???? OK I’m over it and he DID in fact get his PSII……………. And game. Oh, then he amended he request, imagine that, to include taking one of his friends to the movies on Saturday.

I have been working on a DVD about Miranda. We selected six songs to play at her funeral and I have them on the computer putting a slide show together. OK not toooo original but mine will intermix some video in with it. Between that and my subject matter and me and my family being the only ones that counts… it will be a the best darn DVD EVER!!!

My Progress? Sad to say in the last three weeks of starting I am on my second of the six. I use to think putting those collages together was a pain. Here I have to figure how many pictures and/or video clips per song, then the order of them, then play it. Adjust pictures that are not in the right spot or might be better in another; After quit a few trial and errors and not to mention tears I have, I Can Only Imagine, done. I am Currently working on, Tears in Heaven, by Eric Clapton. This one is the hardest for me for I picked it out to play at the funeral and the words hit WAY to close to home.

As many of you know my computer to geek ratio is not, and probably will never be, at the level I really wish it to be at. If my mind was a computer on Windows 98 2nd edition it would be in a permanent fatal blue position. There fore, that is one of the main reasons for having XP Pro at the house!!! Of course I’ll never be compare to that one!!! Well, It comes with Moviemaker I, and you can update to MMII. And of course why would a Microsoft application run a Microsoft program??? Windows media player didn’t play Windows moviemaker. Not till I went out and found you needed this, that and the other thing to make it “jell”. Now I’m still fighting it to see if I can convert all this in to a DVD… Jury is still out. But once I have it done it will make a really nice High School Graduation present for Dylan. For all you out there that are interested, I will send you a free copy. Shipping and handling though will cost you a couple hundred. Well, by 2011 it will… maybe.

I can’t believe she has been gone for over two months… It feels like years one minute and yet I can still feel her presence everywhere; How many times did she “bug” (?) me to ‘type-up’ while I was trying to actually do some type of work. Hard is having to look though four thousand pic.’s of her and trying to decide which one goes where; All the while fighting laughter and tears. Trying to hold on to sanity when it too can be quit elusive. Hard is putting in to words what you know you want to scream and just typing them seems trivial.

Hopefully it won’t be another month…

Martin

Sunday, July 18, 2004 8:56 PM CDT

I haven’t been here for a while because I knew what to expect. I’m not afraid of tears at all. Just that my own bother me more than someone else’s. I wish I could tell you how many times I have sat down at night to do an update or to compile a new collage. I just haven’t been able to. I have done one new collage and will attempt another before I post this update. With two new collages… which ones do I sacrifice on the site? By far, in comparison, these choices will be easy.

About all I have to do these past forty-one years to show my stupidity is to open my mouth. Who am I kidding… really all I have to do is to simply wake up and start the day. In fact, I have kinda took the old advise of ‘It is better to simply look stupid, than to open ones mouth and remove all doubt’ to heart. Some times this has worked really well for me at work… I did type ‘some times’ didn’t I? Why, yes I did! So now instead of opening my mouth I have found an easier way of doing it… I’m typing it on the computer and putting it out on the web for ALL to see. This has got to be the ultimate in stupidity!!! Hey! Welcome to my hell.

All here on the Shively’s three-quarter acre lot are still kicking. Usually each other but the neighborhood dogs have gotten smart and go inside when I come out. Dylan is looking forward to sixth grade… sort of. No kid ever looks forward to the end of summer, but I think he misses his other friends that aren’t in the neighbor hood. Out here in the sticks of North Carolina their middle school is 6th, 7th and 8th. And this year he will be inducted into the art of music. He wants to learn how to play the trombone. Sigh… don’t they still have those little musical triangles in bands anymore? (ting… ting… ting… ting ting ting) Oh well.

My daughter is probably looking over my shoulder as I write this looking for spelling errors. Yes, I have spell-check… let’s just say hers is more Devine. I truly hope that all my questions will be answered when I get to heaven. And I do have plenty. I pray that all her questions have been answered too. There’s one “sex talk” I won’t have to have… I don’t know what a four-year old would ask God. How he explains where her parents are. Why they are not there with her. I can guess who is caring for her… provided she needs caring for in heaven. Come on it is heaven after all. Of all the things she will love in heaven is all the music. She loves music. I would put a CD in the computer and she would start dancing to Brooks and Dune. I’d let it play for a song or two and switch it out with another CD. She would keep right on B-Bopping only to Aerosmith this time. She would look at me funny for a second or two till she figured out what Guns and Roses were doing. And there again she would keep right on dancing. Country was her favorite though. God help himself if his has to listen to too much Dixie Chicks. She would listen to rap, only cause she doesn’t know better, too. I can in vision her popping a CD in up there and having that ole fat lady peeking her head though a cloud and letting loose with a wicked C-note shattering her CD as well as her player. Ok I’m letting my stupidity shine like a beacon again.

I have no clue what awaits me in heaven. I don’t know if God has a sense of humor like I do and will only let me in there for a moment and then say,’ Ops, sorry… going down???’ Then again… looking at me you know he has a sense of humor…right?


Well, I guess I’ll leave on that note. Take care

Martin

Sunday, June 27, 2004 10:04 PM CDT

It’s always been interesting to me how some times these journals just simple write themselves. Other times I have to think for minutes or days on how to say (type) what is on my mind. When it is close to home and the anger and frustration is just barely contained under the skin- it’s easy. Yesterday marked three weeks. Its feels like three years since I’ve held her. Longer still since I have given her a belly-fart with my mouth and listened to her cackle with laughter. It’s only been five seconds since a tear has rolled down my cheek from missing her. Do we think of her? How’s that country song go-only every other memory. Of course right now it’s still about every memory.

Gail and Dylan were sitting outside in the shade and Dylan piped-up with some thing about Miranda. Gail was in one chair and Dylan was sitting in his old blue lawn chair from years past. He (we) had given it to Miranda because he had out-grown it and it was just her (kid) size. He looked at Gail and said,’ Ya know if Miranda was here she’d be complaining I was in her chair.’ They shared a smile and he proceeded to amend his statement,’ Actually, she’d be in your lap and still complaining about me being in her chair!’ That time they shared a laugh. Sometimes truth can be funny too.

The first day back at work for me was hard for a number of reasons. However the one I’m going to tell you about is it was also the day I had to drop-off Dylan for Camp Care.
This is a camp for cancer kids and their siblings to go and have fun for a week. Dylan was afraid of leaving Mom alone for a whole week with no one there to watch her. His has become quit the protector. So we arrive and it hits me. Look at all these survivors. And of course I know a lot of these people through the hospital and Rainbow of Hope meetings. Me, the one with the big mouth, the one who will tell just about anyone anything is caught mute. I’m looking for a way out. I didn’t want to be there with all the survivors and the parents. God no, not the parents. I check-in Dylan and his med.’s and it starts. We give the med.’s to the nurses… the same nurses from the hospital… and the hugs and condolences start. By the time the bus leaves I have felt like I was reliving the visitation at the funeral home. I did talk to Tom and Catherine (last name censored due to privacy laws) for a long while after everyone else had left: my own little therapy session. Catherine had suggested they drop by one night with supper for us and how could I say no.

I had Dylan in my sights and saw him sit down on the bus. More talking with parents while the busses got ready to leave. I had lost him when this shadow perks up and starts waving. I return the wave thinking,’ am I really waving to Dylan?’ So in mid-wave I changed my wave to the peace sign. I was relieved to have this shadow return the peace sign…. and that it did include two fingers too.

Personal note to the cook: Next time you make spaghetti and fudge for the same meal, please make sure you don’t switch the salt and sugar. We suffered through it and we are more than willing to let you try again, especially the fudge… 2-3 lb. this time please… Everything was great and thank you.

I’ll get my thoughts together and the pictures I promised for next Sunday.

Martin

Sunday, June 20, 2004 9:11 PM CDT

There has been a lot of discussion and questions from different people on how to cope with the loss of a child. From,’How you doing?’ to ‘Can I give you a few of my prescription med.’s?’ This is leaving out a great many other questions and well-meaning points of opinions on how to try though. I have always told you all what Gail and I have thought and how we have felt. That ends with this entry I’m afraid. Me? I don’t give a flying-flip. You ask and you will get an answer. Whether, you want to hear it or not is yet another thing. But, I will not journal my wife’s agony. She is having a difficult time as we all are, She most of all. Not only did this woman bring Miranda into the world, but Miranda was in her arms when she left it too. That was four years, one month and one day that this child was glued to the side of my wife. Gail couldn’t be gone more than a couple hours at a time before either one started to ache for the other. Because of Miranda’s illness I believe their bond was much closer than just an ordinary mother and daughter- personal opinion for what it’s worth. As the father I had my marching orders and I carried them out to the best of my abilities. Not that I’m overly in touched with my famine-side but I am jealous of her for being the mother. How strange is that?!?!?!?!?!

What follows is one more way of me dealing with my own demons. After three years of journaling it has become habit forming. It also keeps me from going out and kicking the neighbors dog, using Velcro on small defenseless animals and getting permitted for small to extremely large weapons. Anyone want to sell their pet tank?




What are we doin’ here?

>>Not quite sure myself… let’s see where this leads.

It’s awful dark in here

>>You go into the mind of a parent who has lost a child… his thoughts are going to be a tad dark

How’d we get here anyway?

>>Let’s see if I can make you understand this the first time around. We have always been here. You and I are he and he is both of us. We might be random thoughts, a collective conscience or even the proverbial good versus evil scenario. I don’t know, but we exist.

Whoooooa … this dude has been watching way too much Star Trek!! So he ultimately controls OUR thoughts and what we do?

>>Yes.

HMMmmmmmmm… Think he could dream us up a couple ladies??? OK OK OK don’t look at me like that. They would end up looking like Gail anyway. What was that?!

>>It came from over there….

Hey… isn’t that a window?

>>It is yet, one more window into his mind of confusion. It needs some cleaning too.

You’re not going off on an other Star Trek tangent again and Spock-out on me with some more dribble are you?

>>Great, I’m Spock… who are you?

Well, Captain K….

>>……………..DON’T EVEN…….

Out of all the music he could choose to listen to, what is it?

>>Don’t you know? It’s his theme song: ’There Coming to Take Me Away Ha-Haaaa’ Ho-Hooo He-Heee …by Napolean XIV

I still can’t see in all that well.

>>Look closer and you will.


WOW! He really does have a purple straight jacket, even if, it is only in his head.

>>A purple straight jacket, purple crayons, paper and no padding on the walls, what does that tell ya?

Budget cuts?

>>(Sigh)… You missed the TV.

Disney channel… go figure. Miranda’s favorite channel; ‘Out of the Box, Lelo & Stitch,..

>>Not to exclude ‘Barney’- on a different channel or her choice of nearly 1000 videotapes.

I love you, you love me-aaaaaaa….maybe not! Quit lookin’ at me like that.

>>The straight jacket is just there to signify the insanity he’s feeling.

((( maniacal laughter)))

>>THAT’S funny?

No… look!

>>At What?

Remember one of those journal entries a couple years ago where he… we… us… who ever wrote ‘that if I was trapped in a straight jacket and had to draw with my feet- being left handed- would I then be right- footed? Well, he IS right-footed. He is pretty good right-footed too. What’s he drawing?

>>A house, a car and people at the door.

Aaaaaah the American dream.

>>Quit being stupid. Every morning when he left for work he had his own personal send-off. All three would be at the door with hugs and kisses for him. And heaven help him if Miranda missed one of those morning kisses by a minute due to her over sleeping. She would call him at work and tell him what was what! Not to mention remind him to bring home some Sour Patch Kids.

Augh Ma-a-a-an I hate this song… it always make me cry…

>>Sniff… me too…he’s playing the music from the funeral service on her Playco Speak and Play. He’d do the Karaoke thing but he’s a bit wrapped up right now. Every time he plays this I go to pieces… “ I Can Only Imagine… what it will be like…”

Remember what’s next? (sniff)

>>That one by Eric Clapton…

We played ‘Cocaine’ at a funeral !?!?

>>Dear God let you be a split personality… No you dolt! Tears in Heaven. He wrote it after his sons’ death… he was four years old too.

…………………..(Oh…yeah…sorry)……………………

>>Then will come ‘Streets in Heaven’, ‘Angles in Waiting’, and ‘Time in a Bottle’. And if we’re not comatose by then it will all end with the ‘Miranda Song’.

That song done up in NY… right?

>>Yes, we (Gail and us) wrote up all her different likes, hobbies, etc. and they turned it into a country song… Why do I have to tell you this?

Why is he in a room deep in his mind? He’s not like this during the day? Is he crazy?

>>No… he’s got you and me for that!

You’re suppose to be the straight guy

>>You know all of us, we’re all straight

ENOUGH!

>>He has GOT to function. He has got to keep a roof over all of our heads… Keep the bills paid, all the stuff like before. There won’t be any more trips to the hospital. He is still the professional go-fer. And, when all else fails he types up stupid crap like this. This is how he deals with it. No one sees the tears any more. No one sees the biggest portion of his heart is missing. No one sees the flitch or hears the catch in his breath when no one is waiting at the door when he leaves or gets back home. No one can see in his mind how he relives every little Miranda moment as he walks through the house. No one knows how many times he has had to catch himself from asking if Miranda wanted any thing. Gail is so consumed with her grief too she probably doesn’t know how much we really love her or how jealous we are of her.

Jealous is a pretty strong word.

>> How would you describe the feeling of wanting to have spent as much time with Miranda as Gail has? How would you describe the feeling of wanting to stay at the hospital over night with Miranda and couldn’t. How would you desc….

………………………………………………………………….OK OK OK (sniff sniff)

>> You remembering it all again too?

………….(yes)……….

>> You poor bastard….

….To Be Continued…………..( ????? )



Martin

Sunday, June 13, 2004 10:09 PM CDT

Have you ever cried so hard that you actually know how it feels to have your very soul torn from your body? Have you ever cried so much your pain remains, your sobs continue, but you have no more tears left to fall? Have you ever held you child’s’ lifeless body to your breast and just screamed? And yet you still expect to have her pat your back to comfort you as she had done in the past. Have you ever been so surrounded by family full of love, tender hands caressing your grief, strong hands holding you so you won’t fall, and yet feel so alone for the personal loss you feel? If you have, you are truly not alone. For my family and I have joined your ranks.


There are only a handful of memories and pictures I have not shared with you all. I have shared just about everything else though. Through the years I have shared everything of the joy, the anger, the frustrations, the comical banter, the heartbreak of defeat, the surprising comebacks… so I guess the only really personal thing left to share is her eulogy:




Today is to be a celebration. Through the tears, anger and just the flat-out heartbreak of this all… it is still to be a celebration. Today we celebrate the fact that she is out of pain, done with the suffering and that she has been finally and ultimately healed. Our pain and suffering will continue. Our understanding and the lack of it will continue. The fact that she is in heaven with her Nanna and Pappa, playing with Jake, and bugging God for a game out of his hall closet will, maybe someday, help in healing us- individually and as a family.

Family has been a big part and a big help through all of this. From Joyce watching Dylan and playing chauffer for Gail and Miranda on the days they needed to go to the hospital for visits. With all the phone calls from every one while in the hospital. To typing to me while on line. Though the support we received through her website and through all the hugs and prayers we received. From my Dad helping out with phone calls and making sure we were staying afloat… To all of you, family, I say what our family never requires…. Thank You.

To the nurses aids, nurses, Dr.’s and Everyone from Child life… the best way to say thank you, to tell you how we fell, is to simple read something from the heart…


Welcome To the Seventh Floor…




Welcome To the Seventh Floor…

Within these halls we look for help.
All too often we find anxiety, tears,
Worries and the truth.

Welcome To the Seventh Floor…

Within these halls we look for answers.
All too often we find more questions,
We find polynomial words to learn,
We find we are lost even though
We know right where we are.

Welcome To the Seventh Floor…

Within these halls we look for hope.
All to often we find set backs,
We find another front to be battled
We find anything and everything to
Shake our faith.

Welcome To the Seventh Floor…

You are welcome here
Your anxiety eased
Your tears wiped
Your worries soothed
The truth told with a
Shoulder to lean on
Words explained
When lost you’ll be given direction
Set backs and battles taken head-on
Faith strengthen by Doctors, Nurses,
Friends, family
And by God himself.

Welcome To the Seventh Floor…

You will find the best Doctors and Nurses. Soon you
Will come to look at them as extended family.
The care and love they show will make the search for
Last important thing worthwhile….


REMISSION


I could spend an hour elaborating on the Hospital and all the great care we receive through out the past three and a half years. And after this is all over neither my wife nor I will shy away from talking about them or their dedication to our Miranda, to us as parents and even making Dylan an important factor in all of our ordeal.


Miranda Rae was born to us on May 4th, 2000. She lived four years, one month and one day. Where she was barely even getting started…she was still able to influence more people in this world then just about anybody here today. She has touch people through her web site, not only across the states, but worldwide. The spark in her eyes told you right up front what kind of child you were dealing with. The grin and some time smirk told you, you better be ready for an ornery little child. If mad she wore it on her sleeve for all to see. There was never anything held back She was strong in living, loving and playing. And she brought that strength to bear every time she had to fight her cancer. She was as strong willed and independent as anyone. She would drag a chair across the kitchen floor, climb up on it and get anything she wanted before she would ask you to do it. We would here this scraping of the chair,” What are you into Miranda…”

She was eight months old when diagnosis with cancer. This life of hers that dealt with hospitals, Dr. and nurses, spinal taps, infusions and just flat out pain: this was her life. This is the only life she ever knew, and really, she made the most of this life as she could possibly have made.

She has two or three games under the TV at home. And she would wear her Mom out during the course of the day with those. When I got home and it was family time after supper we would go play a game. However the games under the TV wasn’t good enough. “Noooo outta dah closet”. Was her usual request. I would have to pick her up so she could pick it out. Even a chair wasn’t tall enough for that one.

In the hospital she was so use to the routine she would lift her leg for the blood pressure and her arm for the temperature. She could and did do a lot of her own med.’s. She would take Susie baby with her for her procedures. Susie baby had to receive the same procedures as her. Many a night the other three of us would get our ports accessed. Lines flushed and given our chemo. She had the order of procedure down and she was as accurate as any nurse. Well, for a four year old.

Dylan to her was an archrival, nemesis and partner in crime. She would give to him as well as she got. But there was never any doubt the love the two shared. Many a time when she was in the hospital she would ask me if ‘D’ was coming.

She loved her niece too. Emily was like a real Susie Baby to her. One night she was bouncing Susie Baby around and I asked her if she would be so rough with Emily. She said,” Nooooo,” but her eyes and her tone said are you crazy? I know the difference between the two.


There was a storm cloud in heaven filled with tears
For a child on Earth this day was in pain.

On Earth the parents cried and all prayed
For their child had suffered greatly

As the child ascended up to heaven
The cloud was lowered to Earth.

The child asked,” where are you going?”
And the cloud answered,” To take the tears of angels
To Earth to give it a chance at healing after
Losing… some one as precious as you.”


Today I believe that my Daughter sits at the right side of God. As arrogant as that statement is, did not Jesus once say,” Bring unto me all the little children.” And does he not sit there? For this moment- for her celebration of life- I can picture her in his lap looking down at us and wondering why we are crying. She’ll turn to him and say,” Now let’s go get som’thin’ outta your hall closet”




Martin

Sunday, June 6, 2004 6:31 PM CDT

Where on earth do I even begin…

This child has surprised us since the time Gail first walked into the living room and said,” I think I’m pregnant.” And as use can imagine, and as you know, it took her death to stop her from surprising us again.

I want to thank all of you for all the support of the years. I will be posting and I will be putting more pictures of Miranda on the site. I haven’t had the mentality to do it over the last week, but I do have a few more collages in me to make of her. Bear with me… I will get them done.

Miranda was sitting in Gail’s lap in the rocker in the living room when she past. As you can imagine family crowed all around us. Her last breath wasn’t a struggle and she wasn’t in pain. She sighed her last breath and had a smile on her face.

Services:

Heritage Funeral Home
4431 Old Monroe Rd.
Indian Trail, Nc. 28079

Viewing: June 7th, 2004 between 7:00pm. – 9:00pm.

Service: June 8th, 2004 at 2:00pm.


<<<<<<<< PLEASE NOTE THE FOLLOWING >>>>>>

In lieu of flowers we ask you take whatever money you would spend on them and simply right out a check to Godstock. This is a charitable organization that has helped not only our family but also those families that are going through times like ours. Make the check out to: Godstock. As far as where to send the check just bring it to the funeral home. For all you cyber-warriors; If There ever was a time for a show of support for us it is now. I really think it would be neat to line the wall or walls with flowers. It is a very visual sign of support and love. But it is also very momentary. Where do they go, where do they end up after the service? The money sent to Godstock will go to parents like us who could a financial break. I ask all you cyber-warriors to mail the check here to the house and I will get it into the right hands. All these donations will be donated in Miranda’s name. If you have ever been touched by her smile, her antics and her stories please send what you think is appropriate.

The Shively’s
3923 Majestic Ln.
Matthews, NC. 28104



Thank you all again for all the love, support and acceptance I have found in the guest journal. Gail and I always look forward to seeing your responses.

Martin, Gail, Dylan and Angle Miranda

Saturday, June 5, 2004 9:52 AM CDT

This is John Shively, Martin's brother, entering this journal entry.

At about breakfast time this morning, Miranda passed away. She was with her mother and father and many family members through the night and into the morning...that is to say she was in good company.

Funeral arrangements are pending at this moment and I will post that information as soon as it becomes available. In the place of flowers, I do know that Martin and Gail have a charity that they would prefer you consider. I will post the appropriate information for that charity as soon as I have all of the details.

My prayers are with Miranda, Gail, Martin, Dylan, family and friends. God bless her.

Friday, June 4, 2004 10:50 PM CDT

Miranda has made another day… through the night remains to be seen.

Her morphine was increased yet again. She’s getting 1.2ml per hour. This is still a very low dose. Her pump is set-up to where we can give her an extra dose or boost if we feel that she needs it. Her pneumonia too has increased… progressed. Her lower lungs now are filled with fluid. Her heart, the nurse’s say, is still sounding strong. How it all develops or how quickly it progresses is any bodies guess. I’ll be making coffee after I’m off here and will be standing vigil right along with Gail tonight.

To see my baby laying on the couch gasping for breathes breaks my heart. Here we are again with limited power to do anything about it except to push her pump to try to ease her struggle.

My brother came in from Mo. Yesterday as I have mentioned. I was telling him a story of how I would ask Miranda how much she loved me. And I explained she would throw her arms as far apart as she could get them and say,’ this much’. And I would ask her how much she loved Momma and she would do the same thing. When I explained that it was an inside joke to where when I asked her how much she loves Dylan she would typically hold up one hand with about a quarter inch of space between her fingers and say,’ thiiiiis much.’. Miranda is aware… she can hear you; she can feel your touch… and she HAD been listening. As I was finishing my story about Dylan and as we were chuckling about it Miranda, even in the state she is in, had the presents of mind and the determination to literally throw her arms out wide as if to rebut to our usual on going joke. My sweet Miranda is still in there. She can’t move on her own. She doesn’t talk. She keeps a low-grade fever. With every breath getting harder she still had the presents of mind to explain to us that she really does love her arch nemesis and rival.


PAY ATTENTION

When the time come to say good bye to a big chunk of our heart we will be asking only two things of anyone who has come to this website. One, for a boatload of prayers. And two, we are asking in lou of flowers being sent that everyone simply right out a check to Godstock. It is a non-profit organization that helps families like ours that are going through troubled times. They have helped us out more than once and I am not the least bit embarrassed to ask any one to give to this organization. For those of you that are too far away send it to us at: 3923 Majestic Ln. Matthews, Nc. 28104. Be sure to make it out to Godstock. We will get it to them. I would drive out a tank of gas to get a five-dollar check to them… it means THAT much to us.

My Dad and Gma Babs arrived today as well my sister and niece. If this was going to last any length of time I would have to ask for an extreme make-over home edition to step in. we got family stacked and packed and some in two different hotels. It is still over-whelming… but really nice to have all of them here for support.

Martin

Thursday, June 3, 2004 9:29 PM CDT

We’re hanging in…

Miranda was given a couple new drugs to help with the strain in breathing. This in turn will not make her heart work as hard and all things considered will make it easier on her. The first one was to help her relax and help the breathing. The second one is a patch she wears behind the ear, which helps with the vomiting. She doesn’t drink much and she hasn’t eaten in well over a week. What she vomits is mucousy phlegm. My little bit of paradise in hell is turning into purgatory.

We have family here from Gail’s side since last night. My brother flew in from St. Louis to day and the rest of mine will be here tomorrow and Saturday. Family, family, family… You gotta love ‘em. They have been a great help. With everything else going on ALL of it is quit overwhelming.

Gail and I camped out in the living room with Miranda last night just like we will tonight.

Friends and family have been supporting us through this all. And it amazing to see just how many people’s lives this one child has touched.

Martin

Wednesday, June 2, 2004 8:09 PM CDT

As I sit here typing this Miranda is in the living room surrounded by family. Family will surround her till she draws her last breath here on earth… and beyond.

The pneumonia has progressed. The fluids she has been on would now only help the pneumonia, not her. The antibiotics she has been on as well have been stopped. They’re not helping. They delivered an oxygen pump this afternoon. That was hard to see. You think of old feeble people needing oxygen. Though the thought is pathetic… how many four year olds with and oxygen tank have you seen?

I can’t tell you if it will be through the night or a week from now. I would pray for a week if it weren’t a matter of her suffering. Gail whispers into her ear that it all right and it’s ok to let go. Through the tears and the crying some how Miranda hears I’m sure. I want to pick her up and squeeze new life into her from myself. What parent wouldn’t want to give their very last breath to their child? Certainly I would deserve this sort of fate far far more than she. God doesn’t make deals and God seems to want her right now over me… who could blame him.

I don’t know what tomorrow holds for Miranda; just know that she has family all around her caring for her. Both Gail and I were there for the first breath and we’ll be there for the last.

Thank you for all your prayers, Martin

Monday, May 31, 2004 10:38 PM CDT

Miranda has stopped responding to the chemo. I can’t define the exact date. Last February when she fell out of remission we tried a new protocol and it failed. Went back to the old tried and true and it has failed too. So any hope of a medical cure has been pretty much ruled out. Her body is still fighting and so is her spirit. Everyone says they could make a fortune if only they could bottle their childrens energy. If only I could bottle her spirit to live… Maybe I could give it to a child who could use it … kinda like a transplant.

Coming home Friday was a good choice. She seams to enjoy it more here. HMmmm … hospital or home… pretty difficult choice. She spends the majority of her time on the couch. Sleeping or in and out of it most of the time. We have a window in the day of about two hours where she will actually set-up and want to do any thing. Today it was painting a birdhouse for Dylan. She plans to finish it tomorrow.

I can’t say enough about the nurses and the ladies from child life from the hospital. They all have fallen in love with Miranda… then again who could blame them… Friday was a disaster trying to get out of the hospital. Par for the course. But with that delay she got to say her good-byes to most of the nurses that cared for her. When she had a procedure she would go through pre-op and post-op and we had four nurses from there to come up and say good-bye.

This is not my child…
My child runs and plays
My child begs for games out of the hall closet.
My child shouts at me to wash my hands.
My child is up before dawn and waving to me, as I have to leave
My child pushes a chair from point to point wherever she needs it… this is where it goes.
My child takes my face in her hands when she really wants my attention.
My child loves hugges and kisses; she rubs them in, not off
My child flings out her arms wide when asked,” How much do you love me?”

No,no… I’m sorry… this is not my child. My child lies under all that you see. Past the pumps and the plumbing, past the Zofran and morphine too; she lays in wait for me and you.

Saturday, May 29, 2004 4:10 PM CDT

Where to start…

My little saying,’ Our paradise in hell’ is hitting a little closer to home tonight. For the gallivanting duo have returned home. They really didn’t do too much gallivanting up there in the hospital… kinda hard when one is not feeling good as well as tethered to an I.V. pole.

Why bring her home…

We have always said we would know when the time to stop was… who the heck are we kidding… we’re both still praying for a miracle… When Miranda has been in the hospital before she really didn’t start asking to go home till after a couple weeks. She was admitted last Friday and Monday she started asking to go home. You want to call it a sign? Fine by me. She wants to be home with familiar surroundings, her things and us. With her Wht. Count being next to nonexistent, pneumonia knocking on the door and God waiting ever so patiently on the other side… what else could we do BUT bring her home. The antibiotics will keep the pneumonia at bay, we pray. With no chemo maybe she can actually come back a little bit and fight it off herself… yet another prayer. Then with no chemo we aren’t doing any thing about the cancer so there is nothing to keep it at bay. So either way… Lord forgive me… Damned if you do /damned if you don’t. Some times just an ‘Augh Damn’ works for the frustration.

She will receive IV fluids over night starting at ten pm. She will also receive infusions of three different antibiotics. Two of them will be once a day and another three times a day. They are all self-contained and are virtually plug-and-drip. This doesn’t keep Gail from being paranoid. I will be right there with her but when it comes to the med.’s I make no bones about it, she’s the boss!!! And I help where I can… ‘Hand me an alcohol swab… hand me a syringe … take out the trash… ‘ She’ll throw that one in just to see if I’m paying attention. She will continue to be paranoid till she has done it a time or two and she’ll be fine. Gail is a piece of work in all of this too.

Dylan took the news like any one would expect him too. Better than I thought to be truthful. There were tears and questions but no outbursts, no screaming, no pointing of fingers of unjust guilt. Through all of the discussion he pretty much just stared at Miranda as if it all was totally unreal and yet you see it in his eyes that he too realized the truth of it all. And now after four years of him be being her adversary, nemesis and alike he has tried to comfort her, hug her and love her. She still sees him and her old rival and tries to give him a hard time. I’m sure they will both soften with time.

A man who had lead a full life was setting at his home when the doorbell rang. Answering it he found a fire fighter standing there. “Yes? “ he asked. The firefighter informed him of an impending flood that was on the way. The gentleman only smiled and said,” Thank you but, God and I have made a deal and I’ll be alright.”

The gentleman looked out the second floor window at the rain and what was once his front yard. He watched the boat swing around and slide up to house. The people in the boat begged him to come with them to safety. He opened the window and yelled down,” Thank you but, God and I have made a deal. I’ll be fine. “

Later that night the man was on the roof as the helicopter flew above. They lowered a basket down to him and he again he put some thing in the basket and waved them off. And again, he had thanked them but had written in the note that God and he had had a deal.

As you can imagine he died and went to heaven. Standing in front of God the man asked,” God! We had a deal. Why did you not save me?” And God’s reply was,” I sent a firefighter, a boat and a helicopter for you… what else would have me do?”

What is the ‘moral’ of the story for us? Did he send his helping hand down to us and we too did not see? Did we do all that we could have done? What are we missing, what did we miss? As a parent I can’t help but think this. I was once told that we could not second-guess our choices for Miranda. My response to that was that we would stop second-guessing our selves after she has been cured for ten years. THEN, we could relax. I do not doubt our choices; I do not doubt our decisions.

I have a firm grip on reality, wrapped up in my snuggly little straightjacket as I am. Please pass me a purple crayon so I can sketch with toes. This is our story, I blame no one, and after all it is the way life goes. I shall stand straight and tall before God the day he calls. The answers I get may astound me most of all. For all the punishment he delivers to me, I will take it for all will be just and in some way it was meant to be. A sinner? Yes, of course. I walk in his light and shine for all to see. His love and his glory I do not wear on my sleeve. But please… don’t doubt I believe. Where others faith may shine like beacon in night… my right now glows in the dark like 7 ½ watt night-light. I am angry and I have cursed, forgive me … I am at my worse.

Miranda sleeps a lot. She isn’t in any pain. But her tummy hurts from time to time.

More when there is some thing to pass on.

Martin

Wednesday, May 26, 2004 10:32 PM CDT

Miranda is holding her own.

Meaning that not too much, if any, has changed. Monday another x-ray was done as well as today. It is pneumonia. The difference in Monday’s x-rays and today? Again, none. The antibiotics seem to be keeping it at bay???

Her white count is still only two hundred. Not enough to fight on her own. Her chemo has been stopped in order to give her a chance to rebuild her counts.

This whole website was set-up for Miranda. I have the privilege of doing it and typing about my favorite subject, my family. Mostly it is about Miranda… the one lacking, as is usual in circumstances like this, is her brother Dylan. I don’t know where to start with him. He is a piece of work in and of himself. So how do you tell an eleven-year-old boy that his archrival, nemesis and partner in crime will be coming home? The hard part is telling him that she may be coming home to die in her own bed. The hard part is telling him that even if she beats the pneumonia her body has been so beaten up that what ever is next will more than likely be the end. The hard part will be telling him that we don’t think… mind you this isn’t how we feel (hope and prayers)… that she won’t beat the pneumonia. Telling him that we as parents... just don't know what is going to happen next or when.

Martin

Sunday, May 23, 2004 10:00 PM CDT

I know it’s been a while… our miraculous miracle named Miranda is in the hospital again. She had a fever of 102, which got her there, and this was on Friday. She hates being there just as much as we do. Every one always asks ‘How we do it?’ and it should really be phrased,” How does Gail and Miranda do it?” Granted, Miranda doesn’t have much of a choice and as long as she’s in there, Gail will forever be by her side. I too would be there if it weren’t for a certain eleven year old, work, and having coined myself the professional go-fer. Granted, out of all of us here, I do look more like a pack mule… in fact in my life I’ve have even been referred to as a Jack- …. OPS! Almost lost my ‘G’- rating. Mighten I digress… Miranda had a chest X-ray and some thing showed up. Not 100xactly sure what showed up right now though. It showed streaks in her lungs. The tech from the x-ray thought it might be pneumonia and Dr. McMann thinks it could be that or a virus. So I shall let you know which to pray for. Augh heck, pray about both and we’ll have our bases covered. The scary part too is that there are a lot of different diseases out there that will lower your immune system and some thing else will finish you off. “”It was the Aids that killed him, but the complications from pneumonia.” Or; “ It wasn’t really the Alzheimer’s that killed him… “ Do you get the point? Thought so. Last week her ANC was twelve. Not twelve hundred… but 12! She has nothing good to fight with. Her spinal fluid last Thursday was clear. They also did a bone marrow aspiration. It WAS NOT packed with cancer cells like they thought it might be. But Dr. Golumbie said it wasn’t a good sample. It was a diluted sample… what the heck does that mean????


Being in the hospital means once again she can receive e-mails… prepare to copy: (or cut and past)
www.carolinashealthcare.org go to: “e-mail a child in the hospital” and just be sure to give them her name. Type wild… type furiously… type often.


This has been your Accu-Miranda-update… what follows has a rating of PG or better. Those of stout heart, strong religious conviction and anyone who has a clue of what we’re going though may continue. Everyone else may join softflower up against the wall with their mouths closed as tight as their minds.


To Karen Cope personally… thank you for your entry… rebuttal, to our Ms. Softflower. If at all interested you may email me so I can personally forward a copy of my own rebuttal to you. I would have already except I don’t currently have your email. I have been wondering how to handle this situation… or just ignore the thing… some one far superior then I, would I suppose… then again I am not that person….snicker…

Softflower basically blasted me because of my f(censored)g language in one of my journal entries. Read it yourself…under the guest book dated: 05.03.04 and as you know look for softflower as an email address.


I suppose Sunflower can tack on one more bit of self-superiority over me because I find myself being a racist more and more as each day goes by. This race really ticks me off too. Who is this race? It the race of IDIOTS that seems to have breach every other race that is already out there. They are the idiots in the store that take twenty-five items to a 12- item express lane in the grocery store. Then they look at you as if you’re the idiot. They are the pack of idiots that walk in herds in the parking garage blocking the way from me finding a spot to get to my daughter. They are the ones that are so wrapped in them selves to remember that there is a real world out there that we all live in. It’s the idiots that try to crowd in to an elevator before you even have a chance to get out. So really…. No I am NOT a true racist. As I get older I find myself with a lot less tolerance for idiots and stupidity. My own stupidity bugs me the most.


So where to leave this? I personally don’t hold any animosity towards softflower. I do feel she is an idiot though and really needs to try to be a little more intone with the peoples website she visits. If she or any one else can’t handle the truth of having a cancer kid and how it effects EVERY F(censored)G aspect of your life… please tune into another site that will fill you with joy and happiness and self-fulfillment. Chance are if you find this website… it won’t be one with a child with cancer. I think you all know by now what to expect from me. The truth! Some times wrapped in fear, humor and even anger. I love the compliments I have gotten over the years… I don’t do it for that. I love the compliments I’ve gotten for the pictures… I don’t do it for that either. This website has always been MY release. For me to inform everyone to Miranda’s condition and to add my two cents whether it’s worth it or not.

How does it go???… “And these are The Days Of Our Lives”

Siiiiiiiiiiiigh… I’m done. I feel better… how about ya’ll?

I actually feel better to have gotten that off my chest. It feels ten lbs. Lighter… next I’ll work it off of my (censored)s.

Martin

Thursday, May 13, 2004 9:40 PM CDT

Be gentle with me... I'm flying with out a net tonight.

Monday night came and went with the usual bluster of everything thing happening now. I did manage to get the Barbie Beast together in plenty of time to get to work on time. Actually, it wasn't all that bad; Did give me a flash-back to Christmas eve though.

Tuesday Miranda finally got to ride it for the first time. Gail was amazed at how well she took to it. She said it was like she had been riding one since she was born. She loves this thing!!! It goes three and a half miles per hour and yet she has to wear a helmet. the extra hat in the photos you'll see is for shading purposes only. she make enough fashion statements of her own as it is with out our help. OH! Yeah... WE GOT NEW PHOTO'S!!!! Only two though... still waiting for some to land here at the house.

What does it say for a child of four when Nurses will take their own time off to come to her birthday party. What does it say for a four year old when Susan from Child life will stop on her way home to allow her to put make-up on her? YEAH!... see photos (snicker)Besides being extremely spoiled by the staff at Carolina Medical... I think they love her as much as we do.

One last thing and I'm off to bed....

Miranda had her weekly spinal tap and it was clear. Didn't do a BMA but that will come and we'll see where we stand there too. She is holding her own and loving life right now. As soon as we let out our breath... some thing is bound to kick us in the teeth... so we are all enjoying it for now.

Martin

Monday, May 10, 2004 10:50 PM CDT

Greetings Miranda fans…. WE NOW HAVE A FIVE YEAR OLD… you would be too if you had two birthdays a year!!! OK she is officially four by anybodies count… we just won’t let HER do the counting.

Due to technical difficulties pic.’s are on hold for a day or two… sorry. Suffice it to say after the years of my own blunderings I can honestly it ain’t my fault!!! The digital camera took it upon itself to malfunction just about every other picture. We do HAVE some… just not enough for my usual collages. On top of that my camcorder just flat refused to work. Luckily, her brother and sister-in-law (snicker, that sounds funny) had brought theirs and we will at least have footage of it.

This was the birthday party that almost wasn’t. Friday night Miranda was up around 1 am. OK technically it was Saturday morning. She was throwing up and wanted pain medicine. She got her med.’s and was still not feeling good when she got up. Gail called the service who called the nurse who called the Dr. who called back the nurse who called us back. Yes, it’s an evil process!!! A show of hands of people out there who has dealt with this before… one, two… He had prescribed some Zofran and it worked. Gail had said she was looking forward to the party all week and that she thought it might have been nerves. Saturday night and last night she slept through the night and has yet to have any tummy problems. Yes, we had visions of the hospital dancing in our heads.


Her party went off with out any problems. In fact, she had a very special visitor from Connecticut. Her Uncle H.E. and Aunt Cathy. They drove all the way down (12 hr.’s) Friday night and left Sunday morning. They showed up at our house around one when the party started and shock Gail and the rest of us. You two made our weekend. Thank you for coming.

Miranda had a couple more surprise visitors of the four-legged kind too. Surfer and Sam had talked… or should that be barked … Ms. Tucker into bringing them. I might tease you with a few shots of those that came out.

Gail had suggested a Big Wheel for her for her Birthday. I stopped by a REAL toy store to see what I could find. I called Gail from the store and started to beg. I wanted to get her one of those battery-operated four-wheeler. Granted, Dad wanted the camouflaged JEEP… Aurgh, Aurgh, AURGH!!! That would have put hair on her head… and a few places besides!!! But, I got BAAAAAaaaaaarbie , instead. She loved it. Only problem with it was it was too small. It was rated up 40 lbs. And she’s 38… Lb.’s that is… she won’t be 38 til her 19th birthday. Her feet barely fit into the pedal area and her knees were up around the bars. So back it goes. I come home after work tonight with the latest and greatest version. This thing goes forwards and reverse… no the other one didn’t do reverse… and will go a whole mile an hour faster than the scrawny one. It certainly sits a lot high too. It would easily make up two of the other. So half way though getting this Barbie beast together Gail gets the idea its too big and wonders if we … we? Need to take it back and get some thing smaller. I finish assembling it and said if it goes back at least they can give me an extra twenty-bucks for assembling the d (censored) thing. She has a helmet that was to be for her tricycle that she can wear and her mother will be chasing her all day making sure she DOESN’T fall off… what more do you want? I brought up the fact that she wanted to exercise… no; she didn’t think it was funny either!


Miranda got a dress-up “Kit” from one of the many and in it she got a wand. She proceeded to go around and make people misa-ppear. Not quit disappear … but we knew what she was saying. The exaggerated arm waving and the cut of the eyes as she makes you misa-ppears is a total package.

Miranda’s antics keep us in stitches. I wish I had the talent and the time to tell all of them. The good ones right along with the bad.

Wish I had something good to say about Mother’s day. Gail did NOT have me to deal with… that might be good for her… Shup Susan! The one Sunday I have to work in like 4 years was yesterday. She got cards and after 18 years of marriage I’ve learned any clothes I buy for her gets returned- so it’s cash for that.

We’re on ten-hour days at work, so I’m off to bed.

Thanks again to all who came to the party and the web site to wish her a happy birthday and Gail a happy Mothers’ day.

Martin

Tuesday, May 4, 2004 9:55 PM CDT

Knock knock knockin’ on heavens door…
…Knock knock knockin’ on heavens door…
……NOT TODAY!!! TODAY I TURNED FOUR !!!!!!!

OK that’s the second time I used that miserable line. I suppose the miserable part comes from the truth of it.

Though her smile will stop you in your tracks… the world won’t stop for even a second for our Miranda. If I could put time in a bottle… (ok showing my age on that one). I still had to work, Dylan had end of grade testing… reason number two for prayers…and Gail and Miranda were at home as usual with their battles you have come to know.

I called from work to wish Miranda a happy birthday. She appropriately asked me, “When does it start?” (Her birthday of course) then she cackled and said some thing about it starting when Dylan got home from school or when I got home from work. The concept of it lasting a whole day was lost.

All was fine when I got home and she still wanted to know when her birthday was to start. I feel what she has been asking all along is when is my party going to start. Being the four of us we had supper, and went to get ice cream for her birthday. Before the ice cream she came to the back door and asked if I was ready to start her birthday… of course I said yes and she virtually proclaimed her birthday didn’t start until we all sang “’Happy Birthday’ to her. She can get embarrassed… not usually around us… but she can, and she did as we sang. Dylan took off into a solo chorus of ‘how old are you ‘ which made her hide and cackle all the while. Upon completion of the singing we had to help pudgy little fingers to stick up four fingers. Ice cream went over well too. Her appetite has taken a bit of a dive. So a few spoonfuls were OK by us. One of those occasions where a whole scoop eaten is better than nothing at all. Sound familiar to any of you out there? Her place to get ice cream tonight was a place called Bruster’s which she in her Miranda-ized way pronounces it Rooster’s. I personally don’t want to know what type of barnyard flavors that place has…

Saturday will be the party. Asking a brand new four year old to understand the difference between a birthday and having a birthday party on two different days is easily solved by telling her this year you get two birthdays. We have had to scale back the size and people coming. Gail and I certainly don’t want to overwhelm her. So the horse and carriage will wait for another wk.end. And all except the cook and professional Go-fer will have a good time. Miranda was so excited tonight with just the four of us… can’t wait to see what happens this weekend.

Sunday look for pic.’s of our lil’ bash. Got some from tonight I’ll mix in.

Till then,
Martin

Saturday, May 1, 2004 3:35 PM CDT

Below was writen on Thursday. I have had enough time to put together new pic.'s and once you're done reading you're welcome to venture there. However, that might be the best part of the up-date.
Martin



04.29.04


I’m sorry…

I’m sorry that I ever laid eyes on you… now I can never look at anyone else the same.

I’m sorry you were brought into the world… for now it will forever seem empty.

I’m sorry I ever yelled at you… could I replace them with kisses.

I sorry for ever having held you… For now I shall long to hold you again and again and…

I’m sorry I couldn’t make things right… I’ve asked God to let me to take your place, his reply,” Sorry not tonight.”

I’m sorry if I sound bitter… When you meet God and he if let’s you look… Peek into my heart… the big broken piece that is missing is with you in heaven.

Love, Daddy


I am not really sure where this will lead tonight. Gail called me about 9:50 this morning with the bomb that has finally shattered our world. From the start Miranda has been a fighter. She is strong willed, pig-head and stubborn… which would equate for her even making it this far. Last week we had a glimmer of hope for remission. They did another Bone Marrow and spinal tap to clarify last weeks tests. It has comeback… did it ever leave?

A lot of people ask what is the next step. There aren’t any more steps. She has finally climbed her last. It’s more of what to expect, what to prepare for, how to make her comfortable. But, please don’t take my one fleeting hope, wish or even prayer for a miracle away from me. For still as long as she fights- her mother and I will, as always, be right there to help, comfort and love. And when she and her brother are asleep or not looking; then we’ll ball like babies.

Talking to God use to work. Maybe I’ll talk to him again one day… he isn’t going to like what I have to say.

How do you prepare for some thing like this? How do you maintain day-to-day things with a straight jacket on?

Miranda was riding her bike today with Mom and Dad following. She got mouthy with her Mother about some thing and all Dad can remember thinking was,’ you pull that shit with God and he’s going to put you in time-out!”

We’ll have a small party here at the house on Tuesday for her seeing how that’s the fourth. On Saturday though we plan on a blowout. We hope to have a guy from work come with his horse(s) and a carriage to take her on a ride around the block. Somehow I have a feeling he may get more than he bargained for. Every kid in the neighborhood will want a ride… then again, $10.00 a pop will pay off the party in no time, presents included.

Presents… what do you get a child like Miranda for her birthday. I asked her what really really big present did she want for her birthday. She rolled her round little shoulders pushing her round little cheeks higher and said,” I Don(‘t) know.” Dads’ answer for her is ‘Any F*CKING thing she wants!!!’ We just now have to pry it out of her.

The last time we had to talk to Dylan about her possibly not getting well he suffered just as much as we parents did. For all his anger, jealousy and general big brother meanness he really does love his sister. He suffered stomach problems, headaches and some anxieties. He has end of grade testing next week and we don’t want this to screw it up for him. She’s doing well for now and we can cross that bridge once he’s a confirmed sixth grader.

Right now all is on an even keel. She is doing fine and not really suffering from anything.
Somehow I’m sure I’ll loose it and bitch to you all another night.

Prayer for Miranda can be sent straight to heaven (those don’t have to go through the guest book...But, you do!!!)

Pic.’s will have to wait until another night.

Martin

Wednesday, April 28, 2004 10:15 PM CDT

Greetings once again from our happy corner of paradise we call hell.

Well, I got to start off with a retraction and I’m not even a confirmed journalist… well, HERE I am (cough GAAAA A A G) but not for a newspaper.

First, I wrote that Miranda and Gail were going to be the ‘Poster Children’ for the NC Leukemia and Lymphoma Society. The ‘Poster Children’ was me being my usual smart *** self everyone has come to know and (cough) love. Why do I have to retract? Because when People start asking where they can get a copy of the ‘poster’ its time to come clean.

I am proud too that we have already had a good response to my begging, pleading for money for the Society. Notice I typed good… don’t want to be another Jerry Lewis… but come on … even if it is only a five dollar check folks. A little more guilt, largest check so far is a $100.00. The smallest is a twenty-dollar check. OK. Do you want to be the biggest or the smallest… again, NO PREASURE?

One of Miranda’s many games she has here to play is ‘Hi Ho Cherry Oh’. A simple little game where you have plastic cherries and a spinner and little bucket to put them in as you take them off. When she gets a four she beams. Spinning a bird or a dog will force you to replace two of your cherries. If you spin the bucket you have to replace all of the cherries. When this happens to her she is on the verge of quitting. Replacing hers tonight after hitting the bucket she started replacing she cherries, grudgingly, with the stems of the cherries going into the board. It has holes in the board so the cherries don’t roll off the board. Gail started to laugh when she saw her do this and asked her why. “Because they (the stems) get in the way of picking them up,” was a quit serious answer from Miranda.

Miranda had another Dr.’s visit today. On the way home Miranda reaches over and grabs her aunt who is sitting next to her in the back. They were going around a corner. Her Aunt asked her if she was making sure she… the aunt… wouldn’t go anywhere. Miranda’s reply was, “Ac(t)ually… I’m holding on you so I won’t tip over...goodness.” This girl is a riot!

It has been quit awhile since I had heard Gail laugh as hard as I heard tonight. Miranda got busy with some make-up tonight. Seeing her do herself isn’t unusual. It was her victim she was laughing at. Gee can you guess who that might be? Gail was laughing so hard after taking the picture. After seeing me turned into Me Me (sp?) from The Drew Cary Show I couldn’t but smile myself. Just don’t go looking in the pictures yet. This may take a while before I can work up the nerve for that one to hit the net.

Miranda had yet another spinal and a bone marrow today. Last weeks’ didn’t show anything bad, but didn’t show anything good either. Her ANC is over 2000 which is great. Any way, Dr. G wanted another to see what it would show. More than likely she’ll go back on to VP16. to keep her where she is. After all… isn’t that where we want her to stay? OK… some of us want a cure/miracle… waiting patiently in NC

Martin

Sunday, April 25, 2004 7:39 PM CDT

It never stops amazing me how some kids are resilient and how some kids aren’t. I often get in here to ramble with my bitch, gripes and complaints. It is all too self-serving. I try to convey everything I believe Gail would want me to put in here. But let’s face it, ya’ll get far more because you have to read all of my crap-ola. Over the last three years you have read about the tears, fears, anxieties, heartbreaking tales of others as well as our own, the joys, the humor Miranda has brought to us and others and now tonight we have one more saga to add to her journal.

This past year has been anything but dull!

One minute she’s knocking on heaven’s door…
The next she turning four.

I sit here tonight toying with you as well as my own emotions because of what I have to type. Both of her tests, spinal and bone marrow came back clean!!!! Happy Dance Happy Dance…(this DOES include cartwheels…) so why would this toy with MY emotions? Look at my daughter (see photos) she has beaten all the odds, predictions, “WHAT SHE IS SUPPOSE TO DO” per what the doctors say. We (including the Dr.’s) have thrown THAT stupid rulebook away for Miranda. Gail and I can only thank God that she is still here to enjoy… even when she is pulling a Dylan. The hard part is ‘What’s next?” Does she go back on VP16 as a maintenance chemo? Do we just let her fly and see how long she’ll go? That one really isn’t much of an option. We’ll find out tomorrow I suppose when we take her in.

This weekend proved to be just as ‘Boring’ as the last one… RAH!!! However, yes there had to be a however, it was a lot more physical with all the yard work. Of course Miranda had to be right in the middle of it all. At one point I was sitting on the porch taking a break and Miranda and Gail was in the yard sitting in chairs. Being a man and having manly ways about myself… I passed gas where Miranda’s eyes went as big around as her cheeks. Before she could say anything I beat her to it,” Did you hear that frog?” She just cackled with delight and responded,” Dat fog came outta you…!”and proceeded to cackle even harder.

Not going to give you a blow-by-blow play of our weekend like last time. This is a sore weekend to recant for all the real labor I had to do. More ‘Life with Miranda’ at a later date.

Please remember that we are asking one and all who come to write out a check to the: NC Leukemia and Lymphoma Society. Gail and Miranda are the “Poster Children” this year. You can mail it to us at 3923 Majestic lane Matthews, Nc. 28104. Even if it only five bucks it will be put to good use.

Thank you for stopping by, please fill out a space in the guest book and then write out a check… but no preassure :)

Martin

Monday, April 19, 2004 9:12 PM CDT

To Start off with: Gail and Miranda are this year’s NC Leukemia & Lymphoma Society “Poster Children”??? Gail did this last year and sent tea bags all over the place. This year she’s doing it again and the two of them are on the flyer. It’s a fundraiser for the NC Chapter. If you have ever enjoyed any of her pictures or have felt an ounce of heartache from what she has been through please take a minute and right out a check… even if it’s only five dollars and send it to us. 3923 Majestic Ln, Matthews, nc 28104. No matter how much I would appreciate the cash… Make it out to: The NC Leukemia & Lymphoma Society. There are too many ways, directly and indirectly, that they have helped us. So here is our one time of year to try and help them. Now if you want your Mother’s day tea bag drop me a line via email with your address and we’ll see what we can do. You’ll get the tea bag for your Mother’s day Tea and the flyer and Gail has thrown in an extra picture of Miranda for the ones we send out. Hurry!!! We only have thirty left and you only got five more minutes before we move on to the next item for sell… (Sorry, been watching too many info-mercials apparently)


After rereading what’s below … notice I didn’t say proofread… I am compelled to start off with a few of the basics everyone REALLY wants to know and read about, Miranda. Last Monday was her last day of chemo. Today, Monday, her wht. Cnt. Is at 900. She will be having a Bone Marrow Aspiration on Wednesday. This will be a sign of how well she is really reacting to the protocol. (Is a spinal to be done at the same time?) My, aren’t we asking all the right questions tonight. Don’t know, but will pass on whatever I find later. If it is clear and her blood work is clean… do we consider her in remission? Another good one! Don’t know that either. Aught to be an interesting update on Thurs. Or Fri. Hopefully we will have good news to pass on to you then. If not you know what kind of update to expect. The way the results get back to us after a couple of days I hope to hear before updating. So The Prayer door is open. Come on in and hit your knees.

She is on Steroids, which makes her eat like a horse. Thankfully she’s a little round butterball instead of looking like the horse too. Her strength is back to where she can get around a lot better but being round from the steroids makes it rather comical at times. (Shame!!!! on Dad)

As for Miranda that’s the update… we need prayers for her.

The rest that follows is typical Martin-ized ramblings. Not really required but, would really make the author, sniff, feel better if you did. As always, Please watch your head has you exit through the guest book.


04.17.04: (Saturday)

How do I go about telling you how simply wonderfully boring this weekend has been?

I t goes some thing lika dissss….

Of course every one is up before Dad. Dylan is up at the crack of dawn… not being a school day and all; otherwise it takes the Jaws of Life to pry him from his bed. He in his usual Dylan–way is raising hell and discontent. This works well if you in the Marines and not an eleven year old. So he gets put to work… sorta.

Gail is already busy, but what’s unusual about that? Miranda is up bibble babbling right behind her and again… what’s unusual about that?

Our line-up for the day consists of a total cornucopia of basic crud. BOTH cars have got to be inspected to keep our illustrious gov.’t happy. A few items need to be picked up at Martin’s favorite lil’ toy store… Home Depot. (Aurgh!). Somewhere in all of this Gail’s to get to Grocery store and she wants to shampoo the carpets (yes, she actually wants too… OK she doesn’t WANT to … but with Miranda she does… ). Gail’s brother is to come by to pick up the Volvo that died on us. He is going to breath new life into it for Jeffrey to see if he can get a couple more thousand miles out of it. Dylan is to get out side and get the front yard cut. Hr didn’t appreciate my humor much when I handed him a pair of scissors. Also and certainly not least… our beloved Child Life worker, Susan, wanted us to swing by (with Miranda) and see her knew place and puppy.

Now did all of that take place? Actually it did… just not in that order. Dylan got out and started to cut grass. Gail’s brother was to be at the house at 9:30 and he was. We took about thirty minutes to load the car…and no, Dylan didn’t keep cutting. By the time they left we had a date with Susan set. We all load up and head to Susan’s. (Grass still is half done) We take both cars so I can leave and go on and get my car inspected right from there. Susan’s house, puppy and son were all wonderful. By the way how much do these Child Lifer’s make any way… Mighten I digress… Miranda was NOT use to being out of the house and when she is it is usually the hospital. So, to actually be able to go into some one else’s house left her a bit shocked. Miranda is out (we have her so well trained…) therefore she thinks before she goes home she needs to go where? Where else? Burger King. Chicken, fries. Chicken, fries. They head to Burger King and I head to Home Depot first. There I pick up a new toilet set and the inner workings so our toilet won’t get more exercise than I do… running like it does. Also, a nozzle for the hose. And finally, a new weed eater (AURGH AURGH AURGH). You can thank Tim Allen for the “AURGH’s” which translate in to “MORE POWER” which translate in to “MORE MONEY” so I got the cheapest one they had. I’ll strap on an 18 horse powered Briggs and Stratton later when I can afford it. Then I’ll be ready for that beanstalk of Jack’s. “AURGH AURGH AURGH”. I leave there and go prepared to sit and wait to get my car inspected. With BOTH cars I was in and out with little to no waiting. Get home and THE FRONT YARD WAS DONE!!! I’ve got time to play with my new… I watch Miranda as Gail drives away to get groceries. Miranda walks around a little and promptly asks to be put in her swing. She swings for the next hour and a half till Gail gets back. Some where around half way through I sound like a bad commercial for JC Pennies (or is it Sears?) “Wheeeere is your Mother?” I did enjoy doing some thing with her… just didn’t expect it to be the same thing for an hour and a half. Gail gets home, groceries get put away and I am off again. Out the door to try my new AURGH! TOY!!! If you want to see Gail’s personality change on a dime… try weed eating a couple of her lilies down (not pretty). Next it’s off to the movie store to pick-up a couple of flicks to fall asleep to. Gail makes supper, which was great, and we all watch a movie. Sleep comes and our next day is soon to come and be just as boring… OPS… I almost forgot, Gail now proceeds to do the main areas of carpets that she hadn’t done through the course of the day while I was getting the cars done. And it is now … say… 10:00pm. Gotta love her and believe it or not I do.

04.18.04 (Sunday)

Sunday comes and I’m heading outside with a shot gun to shot the crap out of the bird of paradise cause he shnit on my shoulder the day before and his singing is ticking me off. (And may the Lord be with you and yours, Amen.) Have a nice Sunday J.

We have a boring and uneventful morning for the most part. Gail heads off to Wally World and I steer Miranda clear of the swing. Instead she rides her bike up and down the road for an hour THEN we go to the swing for the balance of Mom’s absence. ‘Where is your mother?

Some where in the course of the day Dylan remembers I’m suppose to take him to the YMCA. So before I get all hot and sweaty mowing the back yard we head for the ‘Y’ to get hot and sweaty… and wet. We get to the pool and think,” GREAT, NO ONE THERE… EMPTY!!!” Only to loose the thought due to it was closed because some one had an accident!!! We go to work out. And back to the house to face an angry lawn. After tackling it (then again it could be the root I tripped over and I made it look like I tackled it…) I head in for supper. After doing the manly burping, scratching and far… you get the picture… Gail reminds me I still have yet to ‘tackle’ the toilet. For this one I’ll need a helmet!!! Fixing the toilet took 15 minutes and we all set down to watch the other movie. After such an extraneous (thank you spell check) weekend I about pass out there on the couch. How do these non-cancer parents do it?!?!?!

I go to bed with a smile on my face thinking I get to go to work in the morning… OK I’m really sobbing… just really didn’t want to admit it.

So, yes, boring, busy, humdrum weekends are all right by me. Miranda was home and I spent quality time with her and my son.

Martin

Sunday, April 11, 2004 11:19 PM CDT

04.14.04

HOLD THE PRESS HOLD THE PRESS

HOLD THE PRESS HOLD THE PRESS

HOLD THE PRESS Or should that be hold the E-Mails. She and Gail arrived home yesterday!!!!!!!!!! You can still email us just use the e-mail down below. Or do some thing really radical and SIGN THE GUEST BOOK ! ! ! ! Gail will be getting in to it more often now that she's home and will read them to Miranda. thank you for such a responce... She got around forty in one day... if she got that many in the guest book my job as author would be ( sniff sniff) so much more... sorry ... more... some thing...

will update further when I have it. In a day or two.

Martin

NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S

other than that every thing is the same. Looking to come home tomorrow... but we'll see. More cartwheels.

Hello fellow Miranda-ites.

Miranda is still holding her own and, in fact, doing better. Her left ear is still producing gunk but not at the same rate or at the same ‘Euuuuu’ factor.

Miranda got about an eight-hour reprieve from the hospital today. I pick them up and was home around 10:30 this morning. She was quit certain she needed her stroller due to the dizziness factor. After three weeks in bed getting up and moving around has caused her some ‘set-backs’. Gail tries to get her to walk the halls at the hospital but she can’t get her to cooperate too much. I took quit a lot of pictures over the wk.end so look for new pictures in a couple days.

Miranda and Dylan have a cousin named Ashley. It was a nice surprise to have her and her boyfriend here for the weekend. It came to be even a further surprise that I had more in common with this “kid” then I’d like to admit. We both do drawings for different types of shops. His is log homes and of course mine is cabinets. It must be universal for draftsmen to complain about the same thing no matter the age difference. Give them heck Jason.

Miranda was excited to be home even though she knew it was only for the day. At one point she was ready to go back because she was having a headache and she knew where the medicine was… at the hospital. They have the good stuff. Gail gave her some Tylenol and a nap and that held her for a few more hours.

She loved going all over the living room and kitchen finding eggs. We actually got her out side. She got these bubbles that don’t pop like normal bubbles: Her and her bubbles. She even had to ride her bike. After it all and heading inside to eat a huge feast… she did loose her balance and fell down. But for all things considered she had a ball loved getting out of the hospital.

Talking to her tonight on the phone she said she wanted to stay at the hospital and just laughed and laughed. Then she proceeded to tell me she wanted to spend her birthday up there too. Even more laughter followed. The harder I protested it the louder her laughing got.

I’M ASKING A FAVOR… PAY ATTENTION:
Miranda can receive email at the hospital and I want you all to flood her with some.

Go to: www.carolinashealthcare.org and click on “Email a child at the Children Hospital’
Give her name: M I R A N D A S H I V E L Y … your email and your message. Hit enter and go to bed feeling better about yourself no matter what kind of scum you are or live with.

That’s all for me night,

Martin

Sunday, April 4, 2004 9:27 PM CDT

Flying without a net tonight (Microsoft Word). There again it helps with the spelling ... just not the grammer. Not that I want you to go back and check but, I did type hear instead of here and it didn't catch it... then again neither did I when I proof read it. So flying without Word tonight might not be as bad as any of my other entries.

Miranda has actually taken a turn for the better. Gail and I are actually looking forward to bringing her home later this week provided all continues to go well. Her left ear is now tappering off and looks to be on the road to recovery. She'll have Chemo monday (5th)tomorrow and that might set her back a little. It always plays hell with her counts. It would be nice to get her home before the wk.end for Easter. We don't have anything special planned... but a nice boring wk.end at home sounds great after the last three or four weeks.

Dylan headed off this wk.end w/ the scouts. Left Sat. and came back today... overnight trip to the zoo in SC. He got to pet a snake, giraffe and even boasted about getting pecked at by an emu.

Miranda had company of the four legged kind this wk.end as well. However, they came to her. Ms. Tucker brings Sam and Surfer to the hospital through the week. They are hospital dogs and they are great therapy for Miranda. They are Shelties and Miranda just gets a smile on her face when she sees them coming or is told they're coming. Poor Sam was a bit pre-occupied on Fri. when he got there. I had brought fried chicken for supper and the trash can was more interesting to him than Miranda. She got her pets in though. Got photos of both Sam and Surfer coming when I get a chance to do more than update.

Will pass on whatever whenever I get, Martin

Wednesday, March 31, 2004 10:42 PM CST

I awake in the rocking chair in the living room. This isn’t so unusual for me. I fall asleep in the living room on average about once a week. This happens to be the third time this week since they have been in the hospital. Also, I normally sleep quit soundly… Gail usually says that’s so I don’t have to hear myself snore. For the past week I’ve been waking up and not being able to float back off in to never-never land. So hear I am up at three am and staring at a TV that has been left on… (It’s amazing what the Discovery and History channel will put on this early in the morning…) with INFO-MERCIALS. I sneaker and set back to have a good laugh as I watch. By the time I really have to get up and get on with the typical drudgery of the day I come to a realization. If by some stroke of genius I could put all of this new found wealth of knowledge together and get it to work I would have the following. Approximately 100 homes that I bought with no money down; each home having their own positive cash flow of at least $200.00 per month. This wouldn’t include the 5,000 to 50,000 dollars I would receive at closing on each house. I would also have washboard abs vs. the flat-out flab I have now. Tony Roberts would motivate me off my ass and make me a much more likable and personable person (Could this even be possible?) Not having enough riches to sustain myself… I would move in to office of the house (yes… another one I paid nothing down for as well) jump onto the computer to make a few ‘hallmark’ Stock Market trades to polish off just a few more hundred thousand dollars worth of earnings just before lunch. I find myself pretty indifferent to it all and I wonder why… OH yeah… it won’t help Miranda a damn bit with her @$^ cancer.


She has been in since a week ago last Monday. She has not had another bout with bleeding from anywhere thank you very much. Though her ears are still infected. Her left seems to have played itself out but her right persists on being a pain: literally and figuratively. She has been on three antibiotics and eardrops to knock this thing out. And yet it lingers. Pain has been bad enough to where she is on a Morphine continuous drip. With her counts getting the crap kicked out of them by the chemo she hasn’t got any neutraphils( ß this one confused even the spell check) to fight with. So we’ll be there till she does kick it’s butt or it kicks her… I’m betting on Miranda. Tomorrow an ears nose and throat Dr. will be coming in to drain off as much fluid as possible off her left ear. This should help get the drops down in there where they need to be.


Miranda’s Dr. and ALL of her nurses have really been great to all of us. So when you have to sit down and talk about Miranda’s future, or lack of one, it’s a bit strange. Because you know they’re pulling for her just as hard as you are. It’s hard to sit down and actually have to put in to words what you don’t want to say. That you would rather have your daughter die in your arms then in any PICU (pediatric intensive care unit). To actually have to tell them that you want a DNR (do not resuscitate) order on her chart. To have words catch in your throat and have to look away because if you keep talking you’re either going to cry or scream…

PICU for cancer patients is a very bad place to have to go. This is where ventilators sustain life and progress is loss and rarely won. Dr.’s there are pretty territorial too. The parent… yes singular… gets to go in for only a few minutes an hour. I’ll be damned if Miranda is going to wake up and not have her Mother… at the very least me… by her side like now.


Martin

Wednesday, March 24, 2004 3:15 PM CST

It’s hard to imagine that through all the chemo that Miranda has been put through … it doesn’t contribute to her problems today. First was last Thursday with bleeding from her port site. Now she was in because of a fever, they are minimal now… but she is now having bleeding problems of a different type.

Dylan and I arrived home from the hospital around 8:00 pm last night. We did the usual get ready for the next, catastrophe, day type of crap and off to bed. I usually read any where from five minutes to two hours before passing out. After yesterday sleeping wasn’t much of an option… then again, it took me about 15 minutes to settled down enough to read anything.

The call a parent never wants to get… didn’t come. But it was one of those calls that still rearranges your gut. It was 11:45 when Gail called. Miranda was upset and bleeding again. They had a ‘pack’ up her nose to help with the bleeding but it was really only slowing it down. She was so upset that they had given her morphine. Gail asked if I could come to the hospital to be with Miranda. Like she would have to ask… Joyce her sister arrived about 12:25am and I got to the hospital 20 min.’s later. I keep asking myself a multitude of questions as I drive. But, the main one that keeps coming to the fore front is: ‘Where are all the cops in Charlotte?” This is the second time I Blew through town to get to the hospital and wasn’t stopped once. I even saw one along the road and I did slow down but a little and he didn’t look up. (Z?Z?Z?Z?Z?Z?)

I got there and all was for the time being calm. Miranda was happy to see me through all the drugs. OK that might be my own ‘want’ to see or to read through those eyes, but I’ll take it. We all were asleep by 3:00 am and were able to get three hours of sleep before we did it all again at 6:00 am. THANKFULLY she spent till about 11 or so really resting. Drug induced or not.

I left to come home to take care of Dylan and get a few things till Aunt Joyce can come back to stay with Dylan. I’ll be spending the night up there again tonight. I’ve got a cold and I have to wear a mask. Ever try and sleep with a mask on? You find out really fast HOW BAD YOUR MORNING, NOON AND EVENING BREATH STINKS. Hey, how about a shot of that morphine for Dad????

Please keep Miranda at the fore front of all your prayers. Thank you,

Martin

Monday, March 22, 2004 11:08 AM CST

Sorry no microsoft word... sorry about the spilling ahead of time.

Miranda is in again...(hospital).

She has had a fever... what else...

PLease read her last journal. She has a HELL of past thurs.

Then again, she has had a hell of three and a half year run.

I'm tired of bringing humor.. dark, light or otherwise... to this web site. I'm tired of beinging the verge of a tearfull break-down every time I come to update.

I suffer today from a head ache and some type of cold starting. I wonder what it most be like for Miranda. I can only imagine because a certain God of ours won't let me take her place. He doesn't deem it right for me to be able to know what to do to save my daughter. He won't let me step in... then again he's not doing too much himself.

I think of her suffering and ask for what all it is worth. To what end is it all for. To what point. Whose point is it going to serve... his? Great! Well, right now it isn't serving Miranda's.

So who should I really be mad at? Myself for not having the power? At God for allowing this to happen with out giving me a valid rerason. To the Bastard who gave my daughter this f........g dease?? Gee... do I refer to God again????

Mixed-up and pissed off in NC

Friday, March 19, 2004 3:26 PM CST

Welcome….

Come on in and sit down. May I pour you a drink of your favorite adult beverage… or twelve? Auuuugh com’on this won’t take long and who knows you may enjoy getting shnit-faced with me. I thought you might enjoy going through a day of our life we call ‘Paradise in Hell’.



I find myself debating with, who else, myself far too often these days. I guess winning all the debates speaks for its self. But, by the same token, wouldn’t that mean that I loose all of them too??? See…? Just can’t win. Most of my debating revolves around no other than my family. Miranda would occupy the majority of course. How do you judge today how you are really “treating” her, for her and to her? Gail and I talk and we make the best decisions we think is right for Miranda… and our sanity (what’s left of it). To KNOW her possibilities of ever having a full life decreases with every relapse… to KNOW that we are reaching for that impossible ‘brass ring’ with each new protocol, with each new remission… to KNOW that all we are really doing is buying her as much time as we can steal away from the bastard call cancer… is far far far different than trying to come to terms with it in your heart. I can’t, Gail can’t and even Dylan too has problems dealing with it. Too hold on to hope, faith and love for as long as possible is a good thing. It really isn’t all that easy when we find out that this protocol isn’t working. That her white count is screaming to the top of the charts like a bad hit single. And that we’ll have to step back, regroup, and try our old protocol again. This involves the antibiotics, steroids and chemo. We found this out Monday.

Yesterday (the piece of paradise in hell we’ll be discussing) started off much as all the others. I left for work at my usual 6:00 to 6:15 in the morning with my usual fanfare of faces at the door waving and calling ‘I love yous’ after me as I left. Well… mainly from Miranda.

Gail’s, Dylan’s and Miranda’s day was all laid out before them as well. Dylan was off to school with the usual moaning and groaning. Miranda and Gail were back off to the hospital for a third day of antibiotics. All was going well till they de-accessed her port. A little blood oozed from the site, which is normal, and they applied direct pressure to stop it, bandaged it up with evil anti-Miranda liking tape and set them on their way home. All was normal… all had been done before with no adverse effects… of course this wouldn’t be a normal day in our paradise in hell if it all ended there…

Gail got home some where around eleven and started to get Miranda changed. When the coat had come off and her shirt… this was when Gail’s jaw dropped because she hadn’t stopped bleeding and she under shirt was covered. She immediately applied pressure and called the hospital. After battling little hands for a half hour and not getting it slowed down any she calls me.

I get the call at 11:45. She calls to tell me what is going on and that she needs a ride to the hospital. I tell her if she is bleeding that bad to call 911 and I’ll meet her there. Gail now is trying to calm me down, keep a hold on Miranda and apply direct pressure. WHATTA GAL … or should that be ‘whatta Gail’??? With no one in the neighborhood home to drive them I tell her that I was on my way. I peek my head in to an office at work tell them that Miranda is bleeding and that I’m gone. What is usually a 30 to 40 min drive was accomplished in 15. Not ever having to use the hazard lights in this car I spent half my time driving and the other half looking for it. I’m here typing this to you so all turned out well.

I get home to find them on the couch. Miranda sobbing and Gail still applying pressure. We load every one in the car… Gail’s this time because it has the car seat… and where do we head??? To the hospital??? HUH??? NO!!! Burger King because little Missy had to have her Chicken nuggets and fries Momma promised her. It has been a ritual after a hospital visit to take her there as a treat. They went directly home because it was too early or some thing and she hadn’t got them yet. So AFTER Burger King I put the hazards on and off we flew to the hospital.

<<<< SIDE BAR>>>> how bad was she bleeding? A needle made the hole at the port site. The blood was coming from there steadily… oozing if you will… just not pouring or gushing. With direct pressure it did slow it down it just would NOT stop it. Let’s continue shall we?

There has GOT to be angles among us because My nerves were in overload and I literally reach 75mph …(in town) and never saw one cop. I was really making good time till a couple back seat drivers made me stop at stop lights (@#$##@@@) I had the hazards on flashing my head lights and honking where I had to. When we arrived at the hospital I went to the front door not the emergency room. Kids like Miranda don’t do ER’s. At CMC they have people out front to help direct traffic… which I about ran over. I’m coming in around 40-45 mph and this poor fool wants to walk out in front of me. I wave him off which he apply JUMPS out of the way and we have arrived!!! Gail jumps out with Miranda in tow and heads for the Children’s Specialty Center… this is where kids like Miranda does go. I take a deep painful sigh and they must have felt sorry for me cause they parked me closer than I ever have been before.

Up in the center when I walk through the door to their room I see blood and bandages everywhere and everyone working on Miranda. All the way to the hospital Gail had been Appling pressure and that job was now handed off to Jennifer. Miranda is still being a pain because she doesn’t want this entire thing going on around her let alone TO her. Time slows every thing down now because she is where she needs to be for help. In all the turmoil Gail has gotten blood on her and they give her some green scrubs to put on. Some where in the back of my head came a thought about a sponge bath… thankfully I had the commonsense to leave it there. Things calmed down enough to where I could go and pick up Dylan from school and get back.

I got back with Dylan and only half of what they needed if they were to spend the night for <(<( OBSERVATION )>)> which we really expected. By 5:15 or so they had it pretty much stopped and put us on the floor so she could finish her platelets and get an infusion of blood before they release her.

All said and done we got out of the hospital around 10:30 to 11:00 pm.

She still has a bandage on her site and she DOES NOT WANT ANY ONE MESSING WITH IT !!!!! you think that is clear enough?

Everyone at the hospital has always been get to us. Yes even me… take Miranda way I don’t think I would fair as well…. (Sigh).

To Jennifer… Thank you for so unselfishly giving up you afternoon off to helping Miranda and her parents.

To Child Life thank you for always coming around and getting her to smile and help with the Dylan factor. Thank you for teaching her to stick out her tongue; however, I still reserve the right to be the one to properly teach her how to flip some one off.

To Dr. G: Son… ya missed all!!!

So here was a small glimpse in to a day of Miranda’s life. Not every day is so upended. But in the last three years there have been more of these than I care to recall.

Thank you for stopping by and watch your head as you go to the guest book and have an uneventful week end

Martin

Wednesday, March 10, 2004 10:23 PM CST

I’m happy to say that I am typing this from home… as I always do… and have spent the night here with the family and not at the hospital!!!! It really is the little things we take for granted. We made it through the weekend too with out a trip to the hospital and that was really nice. Didn’t get anything ‘Major” accomplished…. But then again… who cares!!

Miranda is for ever Miranda. Dylan was in the kitchen doing homework. Gail was cooking (if it isn’t hamburger helper, French toast, hash browns, eggs or chocolate chip cookies… I’m useless). I was getting a glass of tea (see). So here we all were, but Miranda, in the kitchen doing some thing. Miranda is left in the living room by herself in front of the TV. As I am sure there a number of house holds out there that have TV’s running in the background (I’d hate to think we’re the only ones!!!) One would never expect a three year old to answer a question off the TV in a rather loud manner. The question???

Does everybody know what time it is ??? IT’S TOOOOOOOOOL TIME …. (cue music)

This Child of ours just floors us.

Miranda can, in fact, get up in my chair at the desk. Turn the computer on. She’ll turn on the monitor and wait, some times even patiently. Click the icon for my personal setting (XP Pro for you fellow nerds). Wait for the screen to come up and will go straight to the start menu. Clicking it will give here a choice -but she knows right where she wants to go. She has learned that the icon of an eye will get her into the photo albums. It will bring up the folder with the latest pic.’s in it. But it will be just a picture of a folder. She’ll double click on it and the next folder too to get where she really wants to be: A gallery of thumb nail pictures she can now dbl. click on to view. She knows too that an arrow at the top will let her scan the pictures at her leisure. And when she’s done… She can ‘X’ out of it all too.

One day I came into the room and she was on her way to the pictures, so I thought. I said,’No honey the eye,” She let me know right quick that wasn’t where she was going. “NO!… I wanna type up”. And would you believe she went to the “W” and dbl clicked for Microsoft’s “WORD”. This girl is going to cause some guy out there a lot of headaches. Do you think being female she couldn’t let me catch her in a mistake so she bluffed the wanting to type up bit? NAAAaaaaah … not at three (Well … maybe) I’m SOOOOOOOOoooooooooooooooo confused.


She had yet another round of chemo today. It has been her history to fall ill a day or two afterwards. Say around the following Friday. This leaves our weekends open for the hospital… JOY! Last week she had off so she built up some strength. Her White count is at 12,000 and her ANC is at like 5,000. All really good signs. She has been getting the shnit ( pronounced: Sssh Knit … got to maintain a ‘G’ rating after all) )kicked out of her lately. Her white count is a little elevated though. Remember though too when she was found to have come out of remission it was in her Marrow. If the chemo is to work it has to kill it or get it out of there. And there is nowhere else for it to go but into her blood stream. So we kind of expected. I was absolutely floored when Gail told me her ANC. This to us cancer parents is the ‘tell-all’ on how well her immune system can fight back. At 5,000 this means a lot. 1.) She can kick some shnit too if she wants; and 2.) More importantly: there are some really good cells in there being produce to get the number up that high.

I have to run to St. Louis this weekend and it will really be nice not to have to worry about them back here. OK who am I kidding…… I just won’t worry AS MUCH!!!!


I have posed this question before… and no one had an answer (or you thought it too stupid to answer)

So I put before you again: Why is a bra singular and a pair of panties plural??? Maybe I’ll find the answer in the guest book when I get back. Have a great weekend,

Martin

Tuesday, March 2, 2004 9:19 PM CST

03.03.04 Not going to bother ya'll with abunch of my dribble... Just be happy I got the pictures up loaded!!! see ya in a couple of days




We have new pic.’s!!!…. (tomorrow) {snicker snicker}

I may be partial… but Dang my kids are cute. Now if we could just get their mother’s temperament out of them both… I think we could sell them!!!! Now, before I get chastised in the ‘Guest Book”, anyone who knows us KNOWS that Gail is the quiet one between the two of us. So why did I put that in… just so we could have an interesting argument after she reads this. {Lov’ya honey ;) }

I am of course typing from home like I always do. It does not reflect their status concerning the hospital. However they ARE home and all is fine for now.

A week ago yesterday (Monday) she was released in to our custody. That was a relatively short stay and we were thankful. No mystery fungus grew in her cultures and her fever that put her there didn’t rear its ugly head again. Had it… I would have pulled out Dylan’s Light-Saber and lopped it off. OK OK OK there I go again exaggerating again. I wouldn’t have lopped it off because its ugly head is attached to my daughters and we trying like hell to keep it where it is!!!!!

So here we go… we get home ( SIGGGGggggggh of relief) Head back to work and what ever constitutes a normal life for us. And what hits us? One of the top five snowfalls North Carolina has ever had. We enjoyed (not counting Monday) two days of normalcy before it hits. Thursday I cut out from work around eleven. It was coming down pretty good. Being a northerner why did you leave? (I just knew some smart a** was going to ask that…) I’m driving Gail’s Civic and I wasn’t too sure how it would handle. I got home two and half hours later (between traffic and having to stop by our local Wal Marts… as often as we go there we have become honorary major share holders so I had to check-up on it). I made it home and was looking forward to possibly a three-weekend. And GEEEEeeee I got it. Just not WHERE I wanted it.

I call into work at six am and say I’m not even going to try. The pic.’s are from that Thursday. By Friday morning we had from 15-20”. Being from the north it didn’t look like fifteen inches… but that’s what the weatherman said… and we know they NEVER lie. As obscene as my happy dance is… I did it anyway. It was squashed by wife saying,’ you may not have to dig out to go to work, but, you do have to dig us out so we can try to get Miranda to the hospital.
Fevers suck!!!!!!

We spent a three-day wkend. together at the hospital… YEAH!!!

Again, we load up and go home yesterday (Monday). So where does that leave us??? Who the heck knows?

Is the chemo protocol she’s on tearing her up too much?

Is it the cause behind her nosebleeds?

Will her application to be Rogains spokes child be accepted?

Will her FATHER’s applicat….

Tune in next time for another exciting episode of ‘ As the Asylum Turns Neurotic”

Martin

Sunday, February 15, 2004 10:56 PM CST

02.21.04: Just a quickie for now...

Last night we took Miranda in because of a temp of 102.4* It was about 8 or 9 pm. So it was a pretty long day. Fever seems to be under control. She's not my usual terror. T osee her go from full- tilt to zero is disheartening. However, When she is like this cuddling is in great demand. All goes well we should be out by Mon. or Tues. More later. Martin


Some how the approval to pump toxic (waste) chemicals through my daughter doesn’t excite me. It seems to me in this day and age we aught to have figured out a better way. Make fun of me for watching Star Trek if you will… but how many people scoffed when they saw Capt. Kirk use the communicator for the first time. Reflect back next time when some one calls you on your cell phone… OOOooo Weeee OOOooo Doctor McCoy also cured a women in the hall of a hospital with a pill in one movie. I guess one could compare that to some of our oral vaccinations. Granted these are not very good parallels. After all we’re not in the 24th or 25th century. Again, I guess it’s just the idea of having to put a substance in to my daughter no one should ever have induced into them in the first place.

We found out Wednesday morning that she was approved. I was at work and raced home to get them down to the hospital by ten. They needed to do another BMA for the start of the study she is involved in. By the time that was done it was around 12:30. She also has to take a steroid twelve hours prior to her chemo. That would have meant that she would have stayed and got her first infusion around midnight. Not being in favor of ANY hospital stays… we got a prescription for the steroid and ran home. Thursday we got back to the hospital around eight and were admitted. They wanted to do the typical BS and OBSERVE her. She got her chemo around 10:30 and it ran for an hour. They watched her over night for the first treatment to make sure all went well. And I’m happy to say it did. We were released around 1:00 this past Friday. “WE”.. you ask? YES!!!! WE!!!! Because when she’s in … we all feel like we’re in.

Saturday and today she has run a low-grade fever. If it had gotten to 101.5* we would have had to take her to the hospital till they could figure out what was causing it. Or she went fever free for a couple of days. Those types of visits run about a week or so stay. The highest I believe was 100.4*

This particular protocol involves a chemo treatment once a week and that is it. She will have to precede it with a steroid that helps with tolerating the chemo and some side effects. No ‘maintaince’ chemo or any thing else. No once a month spinal tap for an injection of chemo there. It will be two weeks on and one week off. She’ll be able to stay on this protocol for a year.

In the grand scheme of this ordeal Miranda refuses to play by any official rulebook. Then again we have a hard time keeping her on the straight and narrow with any type of board game anyway. Mighten I remind you again she is only three.

Following her brother’s lead she too has got a school back pack and homework and spelling words and sentences and… got it? So she throws her back pack on and heads off down the hall,” Where you going shorty?” I ask knowing the answer. “Got to go wait for the school bus.” “Well, where my kiss bye- bye?” Little feet come running back with the book bag taking turns with bouncing off each hip. Yes, I’m a sucker for bye-bye kisses even if she’s not going anywhere but down the hall.

We sit down to do her spelling words. She asks about words as well as spells them. A lot of words in her world are spelled with a lot of n, m, l, y, g, h, and I’s. I ask her to spell baseball and it comes out nyggdly. The word ‘couch’ is spelled: nylyghghgh. For some reason she likes to repeat letters. Who’s going to argue? Then she asks,” Uhmmmmm whats nynymider?” I answer neurotic. She looks at me with an approving nod. “ What’s nynycim? I answer New York New York Institute of Criminally Insane Mayors. She doesn’t get it and Gail looks at me like I’m stupid. Yes, all is still the same here at home too.


This protocol that she is on is normally used on women with breast cancer. They have found that it also attacks leukemia cells as well. They are through the ‘guinea pig’ stage of testing and have done other studies with this drug. Miranda will be one of twenty in the WHOLE country that will be in this study. This, yet once again, leaves a place of, doubt, concern; hope even… could fill the page with words. It is our hope and prayers that this is the one that will seek out all the cancer cells and destroy them.

Martin

Tuesday, February 3, 2004 10:45 PM CST

I thought I might wait a day or two write this. I typed a page and a half already and trashed it because of the content. Janet Jackson might get by with baring her breast at the super bowl; I just don’t think any one needed to read what I wrote. And in some sad pathetic way it was good therapy.

If you were to fill this page up with the word ‘why’ and then copy this page … say a thousand times… I don’t think you’d put a dent into the times Gail, even Dylan or myself has asked that one simple word.



A man walks into a bar… sits down by his friend and said,”I've got great news.”

His friends replies,” really? Great, let’s hear it.”

“ Well, you daughter has fallen out of remission. And it will be a few days till we get word on if there is a protocol we can use.”

“THAT’S the great news?!?!?” screams the friend.

“ NOOoooo… I saved a ton of money on my car insurance through Gecko.”


Miranda had a spinal tap and a bone marrow aspiration yesterday. The leukemia has come back in her bone marrow. They are doing further test on the marrow to further classify it. I do not doubt the doctors are doing all they can. We’ll know in a day or two what kinds of protocols are available.

So if you’re inclined to pray … we will accept all that sent his way for her.

Some times it's just hard not to be bitter.

Martin

Sunday, January 25, 2004 3:11 PM CST

WE HAVE NEW PICTURES … YES …
I HAVE FINALLY GOTTEN OFF MY ***
AND UPDATED ASWELL AS PIC.’S

ARE YOU IMPREESED !!!!!! (Well, you shouldn’t be)


Miranda continues to do very well. Gail and Dylan seem to be battling who is going to get a cold. So far I have abstained from the fight so I guess I’m the winner.

Sorry, once again, to have taken so long to make a new entry. More and more at work it seems I am stuck behind a computer doing a CAD program. Coming home and playing on this one gets harder and harder. We do have DSL there …so coming home and working on line with this one is like getting caught in a time warp!!!! I know tell some one who cares… right?

Miranda and Mom will be the “Poster children” (snicker) for this years ‘Mothers Tea’. So all that come here on a regular basis please listen up. Please e-mail me your addresses. We would like to send you a card. It is for helping to raise funds for the Leukemia and Lymphoma Society. If you look close you might see the picture of them that they may use in Miranda’s photo gallery.

Dylan is really into scouts this year and you can tell by the new pic.’s that it is Pine Wood Derby time… Not really trusting Dylan with a set of Exacto knives … we prefer him to be able to count to ten on ALL ten of his fingers… I got the basic shape for him at work and the rest was up to him. The car couldn’t weigh more than 5oz.’s. Wheels, paint and all didn’t come up to but 2.75 oz.’s. We had to weigh down some how. Finally Fri. night I told Dylan to get in the car we were going to the shop. There I thought to weigh it down with some washers, screws, etc. In the infamous Tim Allen hormonal grunt, Aurgh! Aurgh Aurgh!!! We found the perfect thing!!! No it wasn’t the Four barrel Carb. Off an old Mustang…. It was a 2.1 oz cullet off of Martin’s router!!!! Aurgh Aurgh Aurgh!!!!! It just looks like a carburetor. Even after adding that we were a few tenths of an oz shy of the limit so we taped a quarter and a nickel to the top. I told him it was too bad we didn’t have a band-aid instead of tape. Then we could be the sponsors of the first “Band Aid 500”. Any one got a splinter from their car and Bam … have a band-aid. Yeah … he thought it was pretty stupid too. They did the races with double eliminations. With 35 cars… this made for a long four hours. He won his first round and then was eliminated in the next two. He ready to move on.

Miranda finishes her two weeks of Chemo today (oral VP16) and she will have a week off. She is starting to get this under-lament of new hair and it always seems to be the funniest thing to see. She has all this old scraggly hair going every which way and then also a light brown cap under it all.

As usual, I’m left wanting to go off on a tangent of disgruntled anxiety. To see her now, to see how happy she is, to see all the things going right for her… then we’re left here waiting for a time bomb to go off. Or will it go off? They say to leave it God’s hands and so I do my best… Other wise some one would get strangled!!!

Martin

Monday, January 5, 2004 10:35 PM CST

Just in to say hi and to tell all of you we did in fact survived the holidays!!!!

Miranda and Dylan made out like bandits for Christmas. Miranda being three was a lot more aware of what was going on this year. After all, she has had two other Christmases and three birthdays to practice with. Not to mention helping Dylan with his.

My daughter… what a life she is leading. She tries so very hard to be normal. She got to go shopping Christmas Eve thanks to a group of neighborhood heroes. They let us and four other families have the run at Wal Marts for an hour or so for their Christmas. She doesn’t find it ABnormal that she has to shop in a buggy wiped down with Lysol wipes and even then sit on a blanket inside the buggy. She and I play a game tonight together. It’s called Hospital. We started out with everyone in the living room getting their Ports accessed. We proceeded to change the dressing on her baby doll. Where she knew the right order for the procedure and even went to the drawer and pulled out an alcohol swab (pronounced: hockey swab, by Miranda) so we don’t get it infected. She ends with her baby by saying we have to wait for a while. I ask why and she rolls her eyes and sighs,’ She’s gotta get her chemo…’ This is where we go to the hospital and we go through motions of riding the elevator by the front door. She, again, rolls her eyes and bobs her head a little as if being patient with the elevator. We have to walk down the hall to her room where we have to wait for the nurse to call us. We go into Dylan room so the doctor can see us and back to her room to wait for Nurse Jen to access her port to do labs. Our game is delayed because its snack time. My daughter….

Is anything but a normal three year old.

Martin

P.S. Christmas Pic.’s will follow… just not tonight

Monday, December 22, 2003 11:49 PM CST

First and foremost… Miranda is doing great. She’s really getting geared-up for Christmas. We are so lucky and blessed to have her with us. There are new photos too.

I’m sorry the rest of the update couldn’t be about all of her antics. Tonight I’m going to dedicate my time, my energy and my memories somewhere else other than on Gail’s and my precious children. You see…when you are a cancer parent, you don’t realize it at first, but all the other children and their families you come in contact with… you get a bond with too. If you have ever read that pathetic poem I wrote; there is a part that talks about all of the nurses and Doctors, and how you come to look at them as extended family. I really need to amend that! Because it doesn’t cover all of the families you come to know, share tears, fears and anxieties with too… just to mention a few.

As you might tell by the tone… we have lost another child to the bastard.

Jacob Courtney suffered with Stage III Neuroblastoma. It is yet another of many cancers that plagues us. The list of the things that this child has had to endure would just floor you. Between the surgeries, the radiation treatments, more surgeries, special treatments/ protocols and a whole list of other things… it was always amazing to me he always had a smile for Miranda. Jake was a couple years older than Miranda, which made him five.

Gail And Miranda loved Jake. It’s that simple. I got to know them too… but being honest about it Gail and Miranda saw, talked to and spent far more time with them then I have. Gail would check their web site daily for updates and Miranda was right there next to her because she liked seeing pictures of the “Jakester”. They have run into each other in the clinic, shared time in the halls when both were on the 7th floor, been right there at Rainbow meetings… I feel I’ve made my point. Of all the kids on the floor, Jake for Miranda was the one SHE could relate too.

So how do you tell a three and a half year old about the only friend her age she has really ever known?

Gail was fortunate enough to be able to go to the service today. I was watching Miranda when she got home. Miranda kept asking if Mommy was shopping. I told her no and that she would be home soon. I didn’t want to field this one alone.

Mom arrived and the questions came one right after another. Gail and I are in her room and Gail takes the lead. Tries to explain that Jake is in heaven and is one of God’s newest angels. This doesn’t really work. Gail also explains that he isn’t in any pain any more and that he isn’t sick any more.

My daughter looks up realizing what this means and asked,” Can I go to his house?” Through teary eyes and as loudly as I can scream inside my head I said NO!!!!

Brian and Chanda, These few words I’ve wrote tonight haven’t even come close to telling you how we feel about your family. Jake really has touched our hearts. We will miss him… especially Miranda. Please forgive me if I overstepped my boundaries and if I got anything wrong. Everyone that reads this web site might not know Jake and what an incredible kid he is. I know you know how special he could be… I just wanted to share it with the people who come here. And how you all have touched us.

Martin

Wednesday, December 17, 2003 7:07 PM CST

12.21.03

NEW PHOTES AS PROMISED... (cough... a couple of days late)




…………(Sigh… here we go again)….


Miranda is still doing quit well…. Some times too well. With a well kid you some times wish (in a kind parent sort of way) that they would catch a small bug… just to slow them down a tad. Miranda in all her glory is right there beside you going full tilt and her mouth out-running her brain. Granted I have always had it easier than Gail. And I love coming home at night to all the misadventures of Miranda’s day. If it were Gail telling the story of her day it would last about two or three minutes and I wouldn’t need an interpreter. Instead… Miranda bibble-babbles and carries on for about five minutes or so and I do look at Gail for some translation and confirmation of what she said actually happened.

I am getting this update done tonight and loaded to the site come what may. Pictures are on the way and will hopefully follow tonight, tomorrow at the latest. Miranda was just in here wanting to “www.com.’in “ Of course that means she wants to type. Not too understanding of the word ’No‘ these days.

Miranda is still on a maintaince chemo. Typically she’s on for three weeks and off the fourth. Next week she’ll get a small present of no chemo as it is her wk. off.

With everything that has gone on this year I have taken days off without pay just incase I may need to take a lot of time off due to Miranda. So here we are at the end of the year and I have six vacation days I have to use or I loose them. Gail now not only has to wonder what she is going to do with Dylan for those two wk.’s of Christmas vacation he has, but I get to be there to add my own bit of confusion to the mix as well. I would gladly leave for the day if there were a theater playing all three ‘Lord of the Rings’ movies. Of course she’d have to bribe me with some thing pretty good if she wanted me to take Dylan!!!!!


To list all the things we are thankful for this year would take some time…. And bore most of you. To have a child with cancer and have her still with us is in itself the biggest blessing we could have, next to a cure. She has, I guess, set her own course of how she is going to fight this disease. And between her and God they some how will figure out how to beat it once and for all. Every time they say she should do this… she doesn’t. And now she has gunk in her ear, As in an infection. In fact, there are no fevers or pain to go along with it. Do you under stand the confusion???

With her you never know what is to come. As a parent I look at her and pray she gets from one holiday to the next. And if the next is her Birthday… I pray a little harder.

I hope this finds all of you well and in good spirits (mood, not the bottle of spirits) well…. To each their own, right?

Happy Holidays

Martin

Wednesday, December 3, 2003 11:09 AM CST

I am beginning to think I'm married to this computer. Most guys think, because it has been drilled into us by women, that we are always wrong. We get up in the morning and just start appologizing. Why? because we're male... therefore we're wrong. So when I face my computer at home, not to exclude the one at work, I'm wrong. Everything I do with it .....is wrong. I start off each time I sit in front of it appologizing. Hmmmmm.... does this mean all the computers in my life are female? If you haven't figured it out I've been having some problems with Bertha. I thought of other names but, BERTHA seems some what appropreiate.

Miranda is still doing great. She gave us a scare right before Thanksgiving with a touch of fever. Gail fed it Tylonal and it never raised it's ugly head again. Will down load some more pic.'s when Bertha is either her PMS or we come to some kind of understanding.... OK OK OK when she is over her PMS... because I don't think we'll ever understand each other!!!

Martin

Tuesday, November 18, 2003 8:08 PM CST

Just a quick note to let you all knoow we're alive and kick'n.

Miranda has been home since last Mon. Her stays are getting shorter...... I like this concept!!!!!

That Mon. she came home I should have been going in. The flu finally got me this year. Monday I went to bed around eight in the evening. Was planning on reading for a few minutes and it turned out to be six hours. Finished one book and got half way through another. Some times it's amazing what you can do though layers of blankets, a fever and coughing fits. For the last week I've been the one to wear a mask. tonight is the first night I've been without one.

All in all, in the last three years we have really been lucky, blessed....... how ever you want to look at it. I personally have only been sick twice. Dylan and Gail about the same. When a fever of 101* can send Miranda to the hospital... Quarentine can and has been stipulated.

Miranda is still quit full of herself. Got a feeling she is going to be like this from now on. When she is good.... she is pretty much wide-open. She can be quit willfull... some tims defient,but, always a joy to have around.

Well, I must say the people at work weren't happy to see me. I had the choise to stay home in a mask and run the chance of giving it to Miranda or going to work. Let's see.... go to work and give Miranda an eight to nine hour window of germ-free living .... or stay home and possibly give it to her. Humph! tough choise. Bottom-line... there is about five people at work that wished I'd stayed home. (SNICKER SNICKER)


More later, Martin

Sunday, November 2, 2003 9:09 PM CST

Imagine our surprize when I found this in my documents file. Just thought I'd share it with you to give a little insite to my daughter.


11.08.03



Dear Diarrhea,

Id been awhile… Daddy purty pertective of dah cputer these days. Especially after finding me at the key bord wantin ta ‘wwwwww.com’ing’. he mumbled som’din bout me reformattin som’din he be callin a harddrive. I thought that had som’thin to do with the car and drivin’ home. Oh Well!!!!

When I want to go wwwwww.com’ing he gets me to dah cputer and lets me do some tipping. He even will print it out so I can go show momma. It took him a couple of times before he figured out what I wassa sayin though. I says to ‘em “Daddy I want to go wwwwwwww.com’in” The first time he put me in his lap and the cputer beeped and twirped and whistled I says,”Jewedness (goodness) it gonna blowed up. We wait and wait and waited. I look at’em and he says,”Momma won’t let’em have DSL”. Finally we get to a picture on the cputer of this crasy mouse and duck. I look at’em and say “nooooooo I wantta wwwwww.com.” He looks at me and sayes,”You really want to type up,huh?” all I says is,”Yeeeeeah, jewedness!!”

DIL LAN HAS DONE IT AGAIN!!!!! Momma won’t let ‘em out of his room. He has to eat in dare 2. She musta told ‘em she didn’t want to see ‘es face ‘cause he’s a wearin’ dat dupid ole mask again. She be wipen dings down with the Lysol wipes 2. Ifin he’s not fast enough she might give him a bath with them dings. Momma said he had fever. I says,” take ‘em to dah hospital” And,” Jen will access his port and make ‘em better and then he can come home” Momma said he don’t have a port like me and I says,”they can stick his finger to get his counts.” Momma just won’t listen to me… Jewdnesss!!!!


Sadly to say Miranda is back in the hospital. With my bit of fun above you can tell both her and Dylan are down with the flu. Although his temperature of 102 didn't land him in the hospital like it does her. Other than the fact she doesn't like being in the hospital she is handling it well. It's the parents that need the extra patients and the hard stuff. More later as it developes, Martin






NEW PIC’S NEW PIC’S NEW PIC’S NEW PIC’S NEW PIC’S NEW PIC’S

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Some times it is really hard to sit down and confront doing a journal. Even if everything is going great and easy to write about, all of this forces you to sit down and evaluate everything all over again; The good, the bad and the probable vs. possible. No matter how hard you try to “TING” (finger cymbals… for finding ones ‘happy place’) cope with it all it all seems to come full circle and confront you when you least expect it. We have had some company in the last couple of weeks, but every time I have looked at the computer lately to do a journal my stomach knots. With that being said (typed)… that is pretty much the reason I haven’t journal lately. Miranda continues to do fine; if nothing else I suppose I should have gotten on and said that much, right?

Our company…. The weekend of the 17th was Gpa and Gma Babs. They stayed through Mon. leaving us on Tues. morning. Miranda and Dylan loved having them here. Miranda kept Gma Babs plenty busy while Dad and I either talked computer junk or were playing two-handed Spades. Dads also happen to bring along one of his “O-Scale” Choo -Choo trains for his youngest son (cough, me). A pic. Of that didn’t make the new pic.’s to view. For Christmas I’ve been promised an engineer’s hat and train whistle (toot-toot). Let’s see, how far away is…

Monica is my daughter from a previous marriage and this was her first time to be here in North Carolina with us. She lives in Alabama. She’s married and has two kids. She had hard time understanding our lifestyle; in concerns to Miranda that is. Any time we went off Miranda and Gail would stay home. Gail would run to Wal-Mart and we would stay with Miranda. She asked me,’ If Gail and I got to do anything together?’ ‘No.’ She raised her eyebrows and,’ You know there’s these people called babysitters.’ Where I commenced to tell her how life with a cancer child really was. Where you don’t just drop her into the lap of some snot-nosed neighborhood teenager. You can’t just leave her with just any ole adult either. There is also the guilt factor of us “getting” to run off and do things and Miranda being left out at home. Miranda’s ANC isn’t good and even if it was taking her out into the public isn’t the smartest idea. People let their germ-ridden kids run, cough and hack all over the place no matter where they’re at. Do you realize how many stares she gets because of her mask? Kids don’t know any better… what about the adults though?

Do people understand, for us cancer parents, the joy of our kids’ accomplishments? Evan As small or trivial as they may seem? Do they know the heart ache of having their daughter look up into your eyes and say,’ When I get big I can do dat too?” Do they understand how hard it is not to cry when you say,’ Yes baby you can, ‘knowing full well that day more than likely won’t come.

*TING* (and you wonder why it’s been hard to journal) *TING*


All in all the visits went off without any hang-ups… well there was this one phone call trying to sell long distance that I hung up on…

Miranda is doing good and got to go to the Hospital for trick or treat last Fri. She also wore her mask at the house and was allowed to hand out candy to some of the kids. I was ALLOWED to take Dylan and Veronica around the neighborhood to do theirs.

Maybe If I don’t wait (procrastinate) so long between journal entries I won’t write a book.

Well here’s to you and yours and may you all find your happy place(s)… Martin

* TING * * TING * * TING * * TING *
* TING * * TING * * TING * * TING *

Monday, October 6, 2003 10:05 PM CDT

Have you all enjoyed your vacation away from me? Forgive me… (Sniff sniff) I do so want to be computer nerd… but as usual… I’ve failed. I’ll just have to stick with being the woodworking nerd that I am and leave it at that!!! Not much “CALL” for that though, monies worse too, and then there’s the dust…. OH WHY DOESN”T SOME ONE JUST SHOOT ME!!!!???

On to more profound things… Miranda last Tuesday was admitted to the hospital with a fever. In an average child a temperature of 101 or 102 is noticeable and catches your attention. With a cancer child though it can be life threatening. Fevers indicate that there is an infection of sort at work and with cancer kids having their immune system compromised… they may not have what they need on they’re own to fight it off. Gail took her knowing that they would admit her and by the time they got there she was at 103. They pumped her up with antibiotics and Tylenol. Of course they drew cultures too. They do those to see what kind of neat sick things grow. Thankfully nothing ever did grow.

We ARE home from the hospital!!! OO-Rah! She came home yesterday morning before noon. Miranda isn’t her self quit yet but she’s working on it. She has got some sores on the back of her throat that irritates her. They kill any desire to eat or to drink. Today she is drinking better; let’s pray it is enough to keep her hydrated. Otherwise guess where we’ll be??? The site of her walking down the hall tonight was too cute. Like I said, she’s not herself, but she puts on Dylan’s Scooby Doo slippers and saunters down the hall with the ever present, slightly slower, butt- wiggle of hers to take them to him. At that age they don’t even try they just are cute.

While we were in the hospital we also celebrated a particular birthday too. Before you all start getting excited about Miranda’s B.D. it’s not till next May. Gail… A.K.A. “Mommy” was the one that did the celebrating. I’m sure she won’t mind me telling you her age… she’s (**). HEY! What happened? I thought I fixed this computer. Dough! Back to the drawing board! The only problem with having a young looking wife is that she makes me look that much older!!! AND, I haven’t got much to work with to begin with. I know ya’ll were going to think it so I tried to beat you to the punch.

Dylan… Dylan my boy has taken (finally) an interest in Cub Scouts. A couple of weekends ago we went on our first camp out together. I could probably set him up with his own website to talk just about that one week end. They did an array of things but he fell in love with Archery the most. Now here in our ¾ acre woods we have plenty of room to set up a target and shoot. Really we do. It is just if he misses the target (and we know that will never happen) how long before we have neighbors complaining about the arrows in their yard, broken windows or missing pets? Right now my answer would be only the ones still living. The answer would be that we set up a target at a school and practice there (they’re always missing students anyway… right?)

Well, some how I think I have done my job well tonight. I have embarrassed everyone in my family in one fashion or another. Of course I can sleep well tonight… they won’t read it till tomorrow.

Martin

Tuesday, September 30, 2003 11:07 AM CDT

Once again I find myself ill prepared to have a battle of witts with a computer.

Some how in the last week I have got a bug within my Explorer. All sorts of errors and not allowed to get on to the internet has left me more then ticked!!!

I have alot to pass on about both the kids, however, it will have to wait... sorry... can only do so much here at work.

Miranda up until today has been doing great. Today she headed back into the hospital because of a fever of 102.

Her anc is low and her wht. count is only in the houndred... as in 150 or so.

So here we go again.... not too happy on more than one front today. I'm sure Miranda is more so than me. will update as soon as I am able. Please keep all the prayers coming... we need them more than ever.

I really have been trying to update for the past few days too!!!! Martin

Thursday, September 18, 2003 11:06 PM CDT

Well, Where DO I begin???

This past wk. end was quit the adventure for us. Our weekend actually started on Fri. We got up and headed to Freedom Chevrolet in Monroe. There we were apart of the crowd sending off a group of fifty bikers doing a poker run up to/ through Gettysburg and back. The proceeds went to about three or four families in which one of those were, in fact, us. As you can see there was a lot to keep every one entertained. I cannot explain or begin to show how much appreciation we have for an event like this. Then there is … what to do with the money. When I don’t make forty hours at work because of hospital time, or we have a special need for either of the children, or the ‘unexpected’ comes up … this is what it is usually used for. Not having a crystal ball and seeing Miranda with cancer at the age of eight months…I hadn’t had the foresight to get life ins. For her. So what it will be used for really is up in the air. But to all that road last wk.end for us and the other families… Thankyou. I trust you had a good ride and all made it back safe.


From the Poker run we made a run of our own. To Myrtle beach,SC. We were the guests of the Kingston Plantation Resort. Andy’s Special Friends arranged quit a nice wk.end for us. It was suppose to be Fri., Sat., and leave on Sun. Well we ended up getting to stay till Monday. We were also guests at the following: Calabash Seafood, Mmmmmmmmm ( yes I left feeling like a blow fish looks… or should that be bloat fish??? We spent Sat morn. On the beach and had lunch at Hard rock Café’. That night we saw a show at the Dixie Stampede. That was a night to remember. Miranda got her first close up view, and touch, of a horse. As you might be able to tell in the pic She was not so sure about sitting on one. She did calm down after a couple of minutes and all was right in her world once again. Dylan actually got to sit AND ride one around the arena. Even at eleven he was a bit intimidated. But it didn’t stop him though. I haven’t been on a horse in over 20 years myself. Thankfully no one was around with a cam corder to get that spectacle of me getting on the horse… at least I didn’t see one … gulp! Sunday we crashed at the beach most of the day and went to Ripley’s Aquarium that night.

Breakfast at this resort is just short of a full-blown buffet, so all three mornings I was a happy camper.

I have just covered four days in two compact paragraphs. May be a different night I’ll be able to expound on it a bit. But for now that is all I have for ya. WOW new pic.’s and a journal entry… aren’t ya’ll proud of me? I know ya’ll are wondering why it took till thurs and not Tues to hear anything…………… aaaaaaaah bite me! Love ya, mean it.

Martin

Tuesday, September 9, 2003 11:20 PM CDT

Hey! We’re still here and are still stumped. She has responded well to the chemo and VP16. Please note that I said responded… and not,’ Taking’, her chemo well. As any cancer parent will tell you there is a great and vast difference!!! She is only on VP16 now and it is an oral med. You take the med. And put it into about 2 oz.’s of juice and proceed to squirt it into her mouth via a needle less syringe. For the most part she takes it with a few complaints here and there. And then there are those days you couldn’t get her lil’ three year old mouth open with the ‘Jaws of Life’. Those days involve holding arms, pitching a nose, even wrapping legs around hers… oh by the way …then you have to give her the ‘Squirt’ too. How many of you have or are living that one?

Amazingly enough the Port she had put in is still in and they are able to do labs from it. It also allows her to take a bath like a big girl. It is under the skin so all water play is allowed. This is a good med. Motivator too. She doesn’t pitch AS big of a fit when she is allowed to take a bath along with it. There is nothing in this world that will make her just cackle with laughter as when she poots in the tube. Last night I asked,’ Did you just poot’? Her eyes got big and round and replied,’ I noh (not) poop! That be na a a asty’!!!


We’re heading off to the beach this weekend. So all you would be thief’s come steal bills (and pay them). And because of her port she will be able to get into the ocean and possibly the pool at the hotel. All are under review with the Board of MOM!!! Too many conditions to even begin to list. Now if you think I’m picking at Gail… (well, I am –but for the sake of this sentence… I am not !!!)… She is the foremost reason Miranda is as healthy as she is. So she can review till the board petrifies.

Typical rules that do not apply at the Shively house:

1) God made dirt so dirt don’t hurt… Do you know how much bacteria is in dirt??? God put dirt on the ground and that’s where it should stay… and especially not in the house.

2) The infamous” Ten second” rule. IF you’re that slow… after ten seconds… you don’t deserve it anyway. And you need to loose weight.

3) Just because it comes in a “Happy meal” and wrapped in plastic doesn’t mean it’s clean to play with… (Where are those D@#N Lysol wipes)

4) Kissing on the lips… No, as a matter of fact, I don’t care if you are married.( more directed at Miranda kissing others)


I suppose I could come up with a few hundred, given enough time. It is amazing how if we look back at how we lived two and a half, three years ago; and compared it to today- what difference. I get after Dylan every once in awhile and Gail said some thing about a pot and a kettle and them both being tephlon, black or some thing … I was lost -I have to tell ya.

I will endeavor to get a new pic or two on before we leave. It will be of Miranda and a few of the crew at the hospital.

Martin

Thursday, August 28, 2003 11:07 PM CDT

And yet once again I find myself in front of this contraption wondering what profound pontification I can befuddle ya’ll with. Well, that came out better than I thought and the spell check didn’t burp once!! Oh happy day!!!


The reason for not having updated lately is two-fold. First, the news I have to pass along is not impressive. And second, I really have been putting off sitting here having to rehash my daughters’ mortality. There isn’t a day that goes by I don’t think of it.


10 percent is all they are giving her for another BMT to actually take and to work for her this time. 10 percent isn't good at all... so don’t look for us at Duke. So, she is back on VP16 for a maintenance chemo. The cancer has been place back in hell where it belongs… and Miranda is in remission – yet once again. Oh! Shnit! (Yes, spill-chick did catch that one… but I added it to my dictionary… snicker snicker) By the way did you know that this great VP16 has one side effect??? Yeah, it can actually turn around and GIVE her Leukemia. Good shnit, huh? Over an extended period of time though… as if that makes a difference.


So what to do now…? Keep her as healthy as possible and bundled with as much love as we can. She loves her swing. Out here in NC we have had our abundance of rain and the mosquitoes are really bad … so she doesn’t get to go ‘inging’ as often as she would like. She does get out in the yard though… of course it isn’t as often as SHE would like it. As soon as she gets out there it is like all the mosquitoes can smell the VP16 and come buzzing. So her stints out side are short ones.


I’m just sort of numb. Gail and I have the utmost respect for both the Dr.’s. Dr. Golembi here in Charlotte and Dr. Martin at Duke; And here they are telling us our worst fears are coming true. That we’ll see how long the VP16 keeps her in remission...this time. Reread paragraph three please. It gave her nine and a half months last time. Typically, you get half the remission you got the last time. But, I’m proud to say my daughter is anything BUT typical. So maybe she’ll get 19 months instead of the four. OK OK OK paragraph three again.


To see her run, laugh, play and beat the crap out of Dylan… you would never begin to think there was anything wrong with this little round muffin. To hear her grunt with excitement and tear down the hall in search of more Nerds to eat- one can’t help but smile. To hear her call everyone for supper and to wash their hands- makes her Momma proud. The little shnit even gets on my case when I forget to wash!!!!


It may not be fair- which it isn’t… but, I understand that. Shnity things happen to good people… in this case a good little girl. It wouldn’t make a difference if I went out and shot 200 drug dealers that don’t even deserve to breathe. They serve up a different type of cancer. Miranda would still have cancer and I’d be taken off as a criminal… I could make a deal with God to live a as pulpier, live in a card board box and I’d still loose… DSS would take BOTH Miranda and Dylan. Granted … Gail would leave me before that and take the kids with her… but I’m trying to make a point here.


Again, I still numb from all this. Gail and I have always agreed that as long as the med.’s are working and she isn’t in any pain …we will be right there beside her to help battle this. To steal an extra, week, month, or even a year from the bastard (leukemia) is all worth it. The pic.’s of her aught to be enough to prove that. And I have always said that the quality of life is far more important than just life. One day Gail and I might have to make that decision…


Just not for now.


Martin

Sunday, August 17, 2003 11:04 PM CDT

New Pic.’s

We got home Thursday. Twelve days in the hospital will wear on every ones nerves!!! She came out running for the door once she found out we were heading home. Spent the past few days just enjoying being home. Not much of any thing profound and it is kinda nice.

Now despite all my threats and warnings of bodily harm my boy Dylan did in fact turn eleven. The Twelfth of this month to be exact. Yes, we were in the hospital and had a small celebration there and again today with a few of the aunts and uncles.

Gail had found a fabric to make him a blanket out of… yes the one in the picture… Well, we were on our way back from dropping something off when the subject of his birthday came up. Miranda pipes up with,’ Yeah, blanky… in drawer… me mommy make blanky for Dylan. Yeah, Sure.’ OK maybe that particular present wasn’t a total surprise. Its not too bad when you can celebrate your birthday for almost a week.

Miranda is a riot the most when she isn’t even trying to be. Dylan will get on her nerves and she’ll put him in his place with a perfect little girl phrase,’ Shup dupid lil’ boy’. Shup happens to be her abbreviated version of ‘shut up’. ‘Dupid’ = stupid. And you’re on your own for the rest. We do frown on language like that coming from her or Dylan… but is SO hilarious that we scold her between laughing. The first time she said it to Dylan his face went blank and swung his head towards us as if to say…’Did you hear that?’

Not much to tell about her treatments. She is off the steroids now thank God an extra time tonight!!!! So she should go from a stay-puff marshmallow back to our slightly less round version of our daughter in a week or two. At the hospital she ate two whole pieces of pizza that they serve in the cafeteria. It one of those places that take a large pizza and cut it in to six pieces. Her appetite has been unreal. Also her temperament SHOULD mellow out too. With Dylan around we’ll see………

More to come as we experience it

Please watch the low ceilings as you exit through the ‘Guest book’

Martin

Sunday, August 10, 2003 11:00 PM CDT

No time for MS Word tonight ... so let the spill check be darned!

Thursday was a nightmare. Miranda went to radiology for some tests. This of course involved poking and prodding. She wouldn't have any of it!! To calm her down they gave her a seditive and even that didn't help. They gave her another and she even fought that. In the end she was given a med. to clear a blood clot via an I.V. it only had to run for 4-5 hours!!!! So by nine or so that night she was back in her own room. By the way did happen to mention this all started some where around nine that morning?!?!

She's still in because the med.'s they have her on has to run ten days. All through I.V. that will get them home Tuesday if all goes well. Dylan's birthday is also on Tuesday. He'll be eleven. Provided he lives that long(snicker snicker)We will have a cake for him at the hospital and a couple presents too. We'll have a real celebration on Saturday when we're all home. He thinks its great because he gets to celebrate it twice. Now if we can get him to quit asking the nurses what they're going to get him we'll be alright..... KIDS!!!

Nothing else spillbinding (snicker) or profrane (snicker x2) to pass on so please exit through the guest book and have a good night, Martin

Tuesday, August 5, 2003 10:23 PM CDT

Here we go again……….

(Please sing along)“They’re coming to take me away HO HO HA HA HEE HEE”

Saturday was supposed to be a normal day; Get up, go work with a neighbor for awhile, maybe rent a movie, read a little bit and trail off into never-never land. Sunday, though, was going to somewhat special. I have a guy at work that was going to get us hooked up with a horse for Miranda and Dylan to ride. He apparently works/plays on a horse farm in Monroe on the week ends. I had told him the way Miranda carries on when she sees a field of horses. How, whenever we can we slow down for her to take a look and to just watch them for a few seconds. As you have already guessed that didn’t happen.

Saturday morning Miranda was admitted into the hospital again. The port that was put in a couple weeks ago was swelling. Please keep in mind she is on steroids and has ballooned up like marshmallow anyway. It looked like a golf ball was poking half way out of her chest. They tried to access the port and a lot of clear liquid came rushing out. That reduced a lot of the puffiness. They drew cultures and she had things growing in her blood and her urine. No sure word on those results yet.

Monday I took the day off thinking we would have some answers on her line, a plan, etc. well we didn’t get any. Saturday they did do an X-ray and found that her port was intact and should be more than accessible. In fact, they were able to draw back blood. Got her up stairs and of course…. Nothing!On her test from Monday we found out that her spinal was clear, blood was clear, but,stiiiiiil waiting on the Bone Marrow to come back. Imagine that!!!

Miranda still persists on brightening everyone’s day with her smiles and pearls of fun. The steroids aught to be called ‘Mr. Hyde’s Go-Go Juice’ cause it will certainly make her alter her mood on a dime.

I am thoroughly convinced that Miranda, the hospital and being potty trained were never meant to be all under on roof. And I’m sure Gail feels sorta the same way. Miranda HAS got to ‘go’ just about every 10-15 minutes. Notice I’m still typing… God didn’t get me … I ain’t lying!!! She now has her ‘Potty’ up there with her. Over the weekend we had to put this little ‘top hat’ looking thing in a pan and have her sit on it to do her thing. Well the ‘top hat’ measures fluids and all that. For an adult or older child you sit on the toilet and it fits right underneath you for your target fun. We couldn’t do that with Miranda. One- though she is round … she would still fall though. Two- now that she is up around 40 lbs (TY steroids) if Gail held her up there we would probably loose both of them to the porcelain god. And Three- Sorry folks with her immune system as it is… we are not putting her on a toilet. As a matter of fact WE ARE paranoid.

So here we are in another holding pattern.

Dylan’s first day of school is tomorrow. Now! Between Gail and Dylan … who do you think is the happiest???!!! We’ll see what he has to say tomorrow.

More when I got it,

Martin

Wednesday, July 23, 2003 9:29 PM CDT

Miranda is fine. Doing great except for some complaints about stomach pains. She goes in tomorrow for a quick check-up and blood work. Gail will have them check it.

Her spinal from last Friday came back negative and her blood work was great too… no blasts either.


OK the rest of the Journal entry is purely personal! ! ! !

WHO PUT MY PICTURE ON MIRANDA’S QUILT????

WHO PUT MY PICTURE ON MIRANDA’S QUILT????

Actually I don’t mind… It gives me good reason to talk about it…. but?
WHO PUT MY PICTURE ON MIRANDA’S QUILT????

On the front pg.under the ‘links’ you’ll find a link to smile quilts. It is essentially a cyber quilt. Some one has gone in and put a picture of me in there. It is from when I was in the seventh grade. The seventies wasn’t a good decade. For me or in hair in general!!!!

I’m not asking for you to come out in the guest book and tell me… you can just email me. There are only four people that I know of that can work a computer, know me and have access to a picture of me from the 70’s; and all four are related to me. So who is it?

The link I’m talking about will take you to the home pg.

After entering you will have a list of five pg.’s to choose from… we’re on pg six.( Go figure) Click onto pg five. When you get there you will then be able to scroll down and will have access to pg six. Click on pg six. Miranda is the second name in the first row. Click on the icon the left of her name and you go to her quilt.

Well, some one has really made an impact on our journal tonight now haven’t they!

I hope you will check out her quilt. The link has been there a couple of months and I finally realized that the link didn’t work. It should work now. If you do go, just blur out the geeky kid from the seventies.

Martin

PS MO, if it was you … I’m gonna kill ya!!!

Monday, July 21, 2003 8:08 PM CDT

NEW PIC.'S NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S NEW PIC.'S


Miranda is doing fine. She is potty trained now and that in and of it self is quit entertaining. She wears big girl panties and she doesn’t want ANY THING to do with pull-ups or diapers. In fact she doesn’t even want to wear them at night to bed. So we have taken preventative measures towards any possible accidents, which may occur. She tells one of us she has to ‘Pooh Pooh’ or ‘Potty’ as she is running down the hall. Underwear and pull-up used to be pulled down and slung with whichever foot was convenient at the time. This, thankfully, has calmed down a lot. With her ability to reach the doorknob she has gain access to the bathroom. At times it can very in opportune… such as when it is already occupied. Then you hear,” You stinky,” this is also followed by a three year old cackling.

Miranda had a check up today and all came out great.
WBC. = 6.0 4.0 – 12.0
RBC= 3.9 4.0 – 5.3
Platelet: 123 150 – 450
ANC= 2970

She gets blood work done every time she goes in. The counts above are the important ones we watch. The second set of numbers indicates the range they SHOULD be in.
Please note her WBC (white blood count). It is in the very normal range. For a child who just came out of remission this number is great. Cartwheel in the closet type of great. For example: When she was first diagnosised her WBC was 186,000. Two weeks ago when all this started it was 53,000. The 6.0 is actually read as 6,000. === Hey… wake up!!! I trying to teach ya some thin here and it ain’t English === Why it is read that way? They measure parts per thousands is the only logical reason I could come up with. Then again they did tell us about two and half years ago and maybe I got lucky and remembered some thing they taught me…. HA! HA! Yeah… I’ll laugh with ya.

One of the more rememberable moments for Dr. Golembe will be today. They were re counting Miranda’s potty training exploits when Miranda piped-up and added to the conversation,” I pooh poohed in the potty… I stunk it up for Dyn.” And proceeded to just laugh. She has a very infectious laugh to begin with, then to top it off with what she said, got the whole room just rolling.

Miranda has gone through so much. She has learned to walk three times in my book. OK she really didn’t relearn to walk. She learned before we went to Duke for the BMT. The transplants pretty much wiped her out and she had to do a little relearning but mainly rebuild her strength. And, again last year when she relapsed she had to regain her strength. She has had to re-grow her hair more times then both Gail and I would like to talk about. And through it all she has always kept her sense wonder about her. Her eyes are the windows to her spirit. Her smile is captivating. Her laughter is heart felt. Her tears are unbearable.

And to think she may have to go through it all again. Gail, Dylan and myself will guarantee… she won’t go there alone. Please keep the prayers coming,

Martin

NEW PIC.'S NEW PIC.'S NEW PIC.'S NEW PIC.'S

NEW PIC.'S NEW PIC.'S NEW PIC.'S NEW PIC.'S

Friday, July 18, 2003 7:04 PM CDT

WE HAVE A LINE … Take II:

Yesterday (Thursday) was another day in HECK. As you know we got the line in Wednesday and all the ‘Heck’ we went through getting it there. Well… Thursday morning I got to the hospital and they were to come home. They tried to access the line. The problem came in when they tried to draw back blood. They tried with absolutely no luck. Too play it safe they sent us back down to Radiology for a quick picture to see what was going on. Now the guys in radiology need to work on their bedside manner because when they say,’ That doesn’t look good,’ it really makes you wonder… Anyway, the line didn’t even last twelve hours!! The ‘That doesn’t look good’-guy explained the X-ray and showed us where the line is suppose to be and where it really was… no- the two were not the same.

We spent the day at the hospital. There was no need coming home because Friday (cough-today) she was due for a spinal tap and possibly a Bone Marrow aspiration. Why send her all the way home just to come back the following morning and readmit her? So she could possibly get a bigger room, that’s why!!! We had a closet on the eleventh fl. If you had to use the bathroom you had to pull your pants down and back in to it!!!

Today, however, was a complete success. They were to put in a femoral port vs. a hickman. A hickman is a line that comes through the skin and you can access quit easily. A port is just under the skin and you have to stick a needle through to access it. The femoral part of it refers to the area in which the vessel they were going to attach to. And that would be down the leg by the femor bone. Note- my computer is only so smart… I am getting as close to the correct words and spilling (yes – I did that on purpose) as it will allow and I can intelligently guess at… so let’s continue… The Doctor that was going to do the procedure came and talked to us before it. He was more then willing to do it as ordered, but he wanted to take a stab (? Hmmmm - poor choise of words) at getting it up in the chest area. He said he wasn’t God or overly impressed with himself but would, with our permission, like to try. Being a far better place to have it than in the “groin” area we said sure. FOLKS WE HAVE A PORT IN THE CHEST AREA! ! ! ! ! !

Dr. Golembe, her regular Dr., followed with the spinal tap. This was to pull fluids off to be checked and to also induce chemo in to the spinal column. So By about 1:00 this afternoon she was wiped out & but back at her own room. Now I would have bet you a dozen Krispy Kreme Doughnuts (I prefer Dunkin Doughnuts… but everyone around here looks at me stupid when I say it) that they were going to keep her till tomorrow. So I drove my own car. You know the one that’s polluted with smoke and doesn’t have a car seat in it. So between one this afternoon and about three, Martin drove home to swapped out cars.

It’s now 7:50 pm. And Miranda is sooooo wiped out she is crashed out in the living room. Gail said she’ll have her up in the middle of the night… but that’s all right. She’ll turn the TV on and let her watch it while she holds her and TRYS to sleep.


Martin

Wednesday, July 16, 2003 10:27 PM CDT

WE HAVE A LINE! ! ! ! !

We left the house around 7:00 am this morning. We had to go and get an echocardiogram done first. We arrived back over at the main hospital around 9:00.

Being a more sensitive procedure the Radiology Dept. preformed the operation. They drew Labs to cross match and type. They then wanted to stick her for more labs and then again for setting up an IV. Three sticks in one day didn’t set well with me. So naturally
I opened my mouth, “Why can’t you put the IV in and then draw her Labs off that?” Now this lady was supposed to have twenty-five years of experience and she comes up with,”OH… well I guess we can do that.” HELLO ! ? ! ? ! ? Now I have had a few of those sticks in my days and they ain’t fun when your sitting still let alone a squirming three year old. Why would any one want to do it any more than they possibly have too?
Idiots…

By this time it’s maybe ten. We’re in a little holding cell waiting to be sprayed and deloused… OK we weren’t in a prison cell but it felt like it!!! Finally some one came by to tell us that some one else would be by to talk to us around 11:30 for her 12:30 procedure. ZZZZZZZZZZZZZZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzz….

The short of it…. 11:30 some one did come by and the talk to us for a while and around 12:10 they swooped Miranda off to do the operation. The operation that was suppose to start at 12:30 start actually at 1:10 and lasted till about three thirty. We were escorted back to recovery around four.

The Dr. wanted her to stay the night for, what else, observation…. I head home to get Dylan and some stuff for them to spend the night with. Please for get that I ran out the door telling Gail I know what to get… and then forgot two to three big items …. Shhhh please forget!!!! I call up to the Hospital to find out what room they’re in and that in and of itself is a page I’m not willing to cuss about on this site. I tell Dylan ‘Lets go find them’.

We found them right where I left them two hours before … in the recovery room. We finally get to a room about eight this evening. They were out of rooms and now one is empty but it hasn’t been cleaned and …. Blah blah blah!!!!

Dylan and I stroll through the door here about 45 min.’s ago. He’s in bed and I’m here airing my grievances. And Gail goes through this all the time!! If I were her … I’d end up in jail for killing some one.

Ms. Miranda though made it through fine and is the proud owner of a new line. Which of course means she’ll be able to do the Chemo and that’s what it is all about… not the chemo but the remission that will follow.

Tomorrow I head back to the hospital to pick them up… guess that means I need to get to bed….night, Martin

Saturday, July 12, 2003 10:30 PM CDT

Yesterday wasn’t a good day at all. Miranda was to get another central line in and she didn’t.

If you look at Miranda’s chest you’ll see some veins that are right under the skin. Gail and I had noticed them before but never really thought too much about it. They are caused by poor circulation. When veins and arteries are clotted, blocked, obstructed or in other ways left unusable the body is forced to “reroute” the blood in other ways. The veins we see are bringing blood back from the head and arms. If they didn’t develop blood would be pumped to the head and arms and they would begin to swell. In a normal child over time all of this would take care of its self. Having Leukemia Miranda’s ‘TIME’ is of great importance.

Why the lesson in poor circulation? When they went to put Miranda’s line in they were faced with obstacles. Remember now… she has already had four or five central lines in already. The obstacles were a mixture of scar tissue, blood clotting and etc. In the O.R. they could get the line in but they could never get it to attach to the artery. It would get there and start ‘bouncing’ off of these obstacles and gave the surgeon a royal fit. He came to talk to the two of us. They sent her to radiology because they had better equipment to deal with her condition. Even with their higher tech. equipment they couldn’t get a line in.

So lets see…

No line… no Chemo…

No Chemo… no remission.

No remission… No Miranda.

A bit melodramatic but it is quit factual.


They want to try another way that carries a higher risk for infection and possible long-term damage. They want to go through her back into her liver and tap into an artery from there. At this point I don’t know if is considered a line or a catheter- and quit frankly don’t give a … The actual risks involved are of course an infection like any other line. But going through the liver enhances the risks. Liver damage, infection, clotting (again) or even liver – shutdown. OK we’ve got her back in to remission… now put her on the liver-donor recipient list please.


So if we think the risk are too great with the line (catheter) through the liver… what are our other options… We don’t have any. Please refer to the lines above that start with ‘NO’.

Gail and I are at our wits end. Miranda has always responded to treatment. We are determined to try to get her into remission again. She is a fighter. And to see her laugh and tear up the house in a three-year-old fashion… you could see why we want to too.

If it were a matter of quality of life over her just being there for our sake there wouldn’t be a question for either of us. If she was already sick, lethargic, beat-up and …. But she isn’t. She IS quit healthy. She IS full of life. She IS ready to take on the world… she just has to wait till she is over this.

Our next battle would be another BMT. I’ll save that for another night. Our first and fore most battle is getting her into that all too elusive condition called remission.

So if you are inclined to pray…. We would appreciate all of them.

Down under the links I have a page you can go to. You can go and sign Miranda’s quilt.

Martin

PS …… I try to be as factual as possible with these entries. If any of you know any more about this line through the liver please e-mail or leave a message in the guest book. Just don’t blast me too bad … I do have somewhat of a reputation to uphold. (cough gaaaaaag)

Wednesday, July 9, 2003 9:49 PM CDT

I talk to God tonight. It was one of those one sided conversations again. I was told awhile back that the Bible is God's way of talking to us and prayer is our way of talking to him. Well, I gave him both barrels. So when judgement day comes... other people will be taking an escalader to Hell... He's going to open up the clouds below me and just let me fall. I'm sure he understands my anger. I'm sure he will foregive me. After all... Hasn't Miranda gone through enough Hell here on earth? I just got to make sure he understands my point of view from here.

Miranda has relasped.

Friday she will be getting another hickman put in.

Monday or so she will be starting more chemo. We will be doing as much of it as out patient as possible. WHEN we reach remission we will see if another Bone Marrow Transplant will be an option.

Miranda,"I get line in... I come home?"
Mom,"Yes"
Miranda,"Okay."

Mom,"You know your line is for Meds?"
Miranda,"Yeeeees."
Mom,"And your Meds makes your hair fall out."
Miranda," It grows back..."


Martin

Monday, June 23, 2003 10:56 PM CDT

Hope this finds all of you well.

Our ‘lil darling came running home a week ago today. In the hospital she would tell all that would listen,” When my booboo heals I go home-Yep!!”

She was sent there because of an infection to her central line. After Two days of Med.’s it wasn’t getting any better so they pulled it. It, as any trip to the hospital, was the typical hurry up and wait, we’ll see tomorrow and, Daddy I want fries!!!

She has gotten in to a habit of ending her sentences with, ‘Yep,’ or even ‘Ha ha’. It’s at that quirky state where she’s trying to convince you, hence,’ Yep’. At those times she might even throw in a,’ Yep –sure’. When she gets riled up and is playing, or just plain excited she might give you,’ I’m go’n get you HA HA!!’

Dylan survived Camp Care… or it survived him… jury is still out on that one. According to him he had a get time. He said he spent a lot of time at the crafts cabin and Miranda has the nick knacks to prove it. Got a picture of him driving a boat (TY Amy) and he got to be drug behind it in a tube. (Sniff… I wanna go!!!) He is already talking about next year.

I wish I were good enough with this stupid computer (which one is stupid again??) to be able to encode part of her video we shot for her first B.D. You want to talk about hilarious! She was given her BD cake in her high chair. By the time she was done with it she had it up one arm and down the other. Coa Coa - the dog- was with us then and was having a field day on the floor. This episode ended when she got cake in her eyes from rubbing them with cake-covered hands. She looked up at us with those pretty blue raccoon looking eyes and started crying- we fade to black. We had stared to watch it and Miranda said,’ Her got balloons’. Trying to explain to her it was herself that she was watching didn’t get too far. We did explain that it was she when she was a baby. That seemed to sink in. “Who is that?” we’d ask. She would respond with,’ Me’. Two seconds later,’ Her got to go to the pool’. It was one of those lovable no win situations.

To all those who will be attending Thurs.-See ya there. Rainbow of Hope is having their annual balloon release at this months’ meeting. It is to honor the survivors and the fallen angels. Some how Emily will be there – provided she could bring Flipper and all her stuff.

Martin

Monday, June 23, 2003 9:01 AM CDT

CYBER BUGS STRIKE AGAIN !!!!!!!!!!!!!!!!!
Got new pic.'s for you to enjoy....

At work. Will up date tonight. Martin

Sunday, June 15, 2003 9:59 PM CDT

HaDee HiDee Ho there Neighbors...


Miranda is doing well all things considered. Today wasn't one of her favorites by any strech of any ones imagiation! Her Centeral line was taken out this past Fri. They put in a regular line into her hand for her meds. Today it failed to work and they had to stick her again. Three or four times in fact. It is now off of her ankle. One thing you don't expect on Father's Day is to have to hold down a raging three year old while people poke and prod her with needles.

Today was nice, except for the needles, Gail came back to the hospital with a steak dinner and we all did the manly stretching burping and far...... OK one us did and Dylan tryed.

Before all the needles Miranda had a ball tearing up and down the hall playing with a basketball. It was a mini type ball about 3-4" in diameter with three and a half foot tall basket... right up her ally; Or is that suppose to be court? It did, ofcourse, include alittle bit of soccer and rugby with Dad. She was unhooked from the IV torture tree that gave her the freedoom to raise hell and discontent amongst her fellow inmates. Dad would roll the ball down the corridor in a bowling type fashion in order to hit some innate object and our Heroine would take off after it. Returning she would heave it as hard as she could right at my head. Only when I was distracted did that really cause a major problem.

As of right now it looks like she will be getting home Tues. or Wednsday. The infection is looking better each day and the only reason she is in is because it has to be administered through an IV. at the hospital.

Please keep her in your prayers and Dylan too. He heads off to Camp Care tomarrow for a week. It is a camp for Cancer patients and their siblings. He will be with kids his own age that has or is going through what Miranda has gone through. Possibly fellow siblings. I hope he has a ball and is able to learn a little about what they have had to go through. Mainly I want him to have a ball. So prayers for him too and major withdrawl drugs for Mom. Not sure which is going to miss the other more. Notice no mention of Dad ( sniff sniff) That's OK ... I'll take my other knee-knocker and go play basketball!!!!

Martin

Thursday, June 12, 2003 9:34 PM CDT

..... Moving kinda fast tonight ... so please take notes where applicable.
..... No news is good news, right?
Sorry, got news and it isn't frightening but isn't good either.

Miranda is back in the hospital for a few days. Her line has got an infection of some sorts. the usual red streak didn't even occure. It is a rash with a bit of swelling. So she is back in for a few days. I, personally would like to take the line out. So would Gail. They're try to so save it- kill the infection and go on as usual. If the line comes out she will have to be stuck ( with a needle) each time they have to draw labs or put her under for a spinal. Basically that would be three times a month. Barring any hospital stays ofcourse... SOoooooooooo for now we try to say the line.

Will update soon... in a couple of days... like Sunday or before if they come home sooner.

Keep the prayers coming... he loves hearing from you ya know...

OH! Also there is NO fever associated with this infection... Go figure

Martin

3:35 Fri. 6.12.03

Just leaving work... Talk to Gail and By the time Dylan and I get there Miranda should have her line out. RAH! Would do an obscene cartwheel but too little room here in the fruit cellar they keep me in. For got to pass on last night that she had a spinal this past Mon. and a Bone marrow test.... both came back clean Rah X's 2. Now I don't have to mess with this site til Sun. ......... unless something else comes up ... See Ya

Wednesday, May 28, 2003 10:07 PM CDT

Well here I sit again… No news is good news, right? Not that I was proving a point at all, but this is what we go through with the hospitals all the time. Hurry up and wait sort of thing. But the news is… are you ready? Hold on to some thing tight… She’s still doing great! Phew… thought the build-up was going to get to me there for a minute…

She still has her hickman in her chest. The draw back there is that it is pretty irritated right now. The tube goes into her chest above her right breast and travels under her skin to the heart. If it was in fact infected the redness would travel the path of the tube. Having seen this before I can tell you it is quit obvious. The patch we put over the hickman to keep out germs is what seems to be the problem. She has very sensitive skin to begin with. Then throw two and a half years of having sticky tape on your skin… it’s a wonder she hasn’t had more problems. Just one of those bumps in the road we’ve hit and now we got to get Miranda’s alignment check out. Yeah, that was pretty lame… too lazy to delete it though.

Dylan is tearing up the neighborhood with his new bike. Yes he did pass his grade and next year we will have a whole new set of problems with a fifth grader. That is of course on top of the old ones. Suppose it would be too easy to ask for a whole different set of problems, huh? Then we would complain about those too… so we’ll keep him, as is.

Memorial Day wk. end was fun. Yes, getting to finish Dylan’s fort, working eleven hours on Sat. and prepping the pool for the up and coming summer was a fist rate idea, wasn’t it? Had to put railing along the fort to finish it. I guess now I have to build a ladder so he can use it, huh? (Snicker) I do love watching him and his friends jumping up and grabbing at it though… (Giggle giggle) couple more weeks and I promise to get the ladder built! Honest! (LMAO)

Sorry no new pic.’s. Haven’t taken too many lately. Not to mention how long it takes to create those fabulous pieces of artwork call collages. They do make for good conversation pieces when used as wallpaper at ones work though. (Toot toot) < blowing my own horn>

Miranda is, and probably always will be, a character! Half the time she doesn’t even need to speak. The smile, frown, devil-child look, dimple impressed cheeks usually says it all for her.

In her world, pewter isn’t a dish or a cup. It’s a TV in Daddy’s room that she “ types-up som’thin” on and daddy prints it out for her to run off and show Momma.

She has been trained to spread her arms as far apart as she can when asked how much she loves her Daddy. If she happens to have a cup of tea in her hands; she will let it dangle from her mouth via the straw in order to splay her arms out the appropriate distance. If asked how much she loves Dyn, she’ll show her two fingers with very little air space. She’ll then laugh the devil-child laugh as Dylan plays along with a pout, and then she’ll throw her arms out wide.

As you can see… life here is never dull.

They say God only gives you what you can handle…. My question is why did he have to give it to me on my butt, thighs and waist??!!

OK OK OK OK I’m outta here, Martin

Monday, May 12, 2003 10:18 PM CDT

Hey to every one.

Gail made it easy for me for Mother's Day. All she asked for a couple rose plants. Neither one us claim to have green thumbs so we'll see how things go. Working with roses we might end up bloody red ones instead!!!

Dylan is confident that he has passed his EOG's ( end of year grading). This being true he'll move along to 5th grade and receive a new bike. Hey, I had a weak moment and Wal Mart has reasonable prices!!!!

Miranda pulled out the gardening tools to help with the planting.Would have been better if we gave her her own garden to work in. Those plastic tools can be leathal in her little puggy hands!!!

she also is using the term 'I' alot more in her speaking. "I do it", vs. " Me do it". So on and so forth...

Sorry the entry is short. Doing collages take alot of time and I'm ready for bed ZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzzz

Martin

Monday, May 5, 2003 9:06 PM CDT

SHE’S THREE SHE’S THREE SHE’S THREE

SHE’S THREE SHE’S THREE SHE’S THREE

SHE’S THREE SHE’S THREE SHE’S THREE

To all you Miranda-ites SHE’S THREE SHE’S THREE SHE’S THREE

This was the occasion to where she was even more aware of what was going on. Easter was special. However, this was her birthday and for a week we’ve been asking her how old she was and how old she was going to be. “Tee”, was the answer.

It was a good thing that she is a girl for all her presents were extremely pink. No, if she were a boy we wouldn’t have traumatized him w/ pink! Her presents were on the table and she wanted to know when she could open her,” Peasants”. Yes I do know how I spilled that –that IS the way she pronounces presents.

As you will be able to tell by the pic.’s she received some toy lawn equipment. If they were only real… Dad would be jealous.

She was a trip to watch as relatives showed up,”Loo (k) … … more peasants” She has caught on to the fact that presents are a good thing… especially when they’re hers!!!! She was working through her ‘Peasants’ in true form- tear open and look/scream NEXT!

One of the neater things she got was a tricycle from Radio Flyer. It has a handle coming out the back for the parents to push and ALSO steer!!! She want to go into the ditch… we steer her back into traffic… you know what I mean the road! Only problem is so far it is still rainy and messy around here to where she hasn’t made it out with it yet.

Martin

Wednesday, April 30, 2003 9:31 PM CDT

So here I sit in front of this new fangled contraption… Trying to think of tantalizing tid-bits to pass along… (sniff) I’ve failed again.

Miranda is doing great. She is always doing some thing that entertains us. I don’t think I have seen a more independent child. She will chastise you in a heartbeat,” I dooo’t” (do it). When she falls, stumbles or is about to get hurt and you reach out to help or catch her or even pick her up you’ll get,”NOOoooo”. Yesterday Gail was heading in to get supper started. Miranda, being in usual Miranda form and style, ran to steal Gail’s chair. There is nothing special about the chair other than it belong to Gail. It is, in fact, a Home Depot $3.99 plastic molded special. Our yard leaves a lot to be desired when it comes to landscaping, lets not even talk about needing some leveling too. Our $3.99 special was leaning downhill
and Miranda climbed in. I was about ten feet away in the other special chair. She gets in it and stands up. She had her hands on the back with her head looking down when our disloyal chair started to go. This child must have an army of Angels watching out for her. Seeing what was about to happen, I jumped out of my chair and that is as far as I got. Chair and Miranda was down on the ground. Miranda continued into a summer-salt and continued to stand up and fall over on to her hands. I fight my initial urge to run and scoop her up and do the ‘Once Over’. After all, who likes to get screamed at? Standing my ground I look her over just waiting for her reaction. First, surprise. Second, a smirk indicating,’ Hey that was pretty kewl’. Third, and the real reaction, crying from being scared diaper less. Then, and only then, was I allowed to proceed with picking her up and doing the rest.

Miranda has yet learned another word. Much like pronouncing Dylan’s name this one is going through stages too. First it was, ’D’; it grew to ‘Dyn’ (din); from there we are where we are today-‘De-in’. The word in question started out as,’ Boo’. And it is only in it’s second stage now which is pronounced, ‘Booby’. We will patiently await its development into what it is suppose to be,’ Boo- Boo’. Until then we will try to keep her ‘Boobies’ to a minimum. That just doesn’t sound right coming from her father does it?


Any word from Duke? …………………………. Yes …………….

When I sit down to write about Miranda it is easy. As you can see from above, when your subject matter is hysterical things seem to roll of the ………. ‘The pen’???

When it comes time to type about her in a medical sense or what is actually happening at any given time (in hospital, etc) that is when it gets hard. Because this World Renowned Doctor doesn’t see Miranda through our eyes. I suppose he only sees her through the microscope. Oh, let’s not forget the statistics too. According to this Bozo, because she came out of remission in her CSN (Central Nervous System) He sees her as incurable. No, not incorrigible, that’s her Mother’s and I word for her. Incurable. As in no hope, take her home and just wait for the worse, ‘Next case please’; that type of incurable.

I am certainly glad I was talking to Dr. Martin and not Dr. Bozo himself! He immediately came back with,” You know neither Dr. Golembi or I believe that!”

We are going to keep on the same course we’re on… minus Dr. Bozo… She will get monthly L/P’s with chemo for another six months. She will remain off of any other chemo. She will stay in remission so she won’t need any. After six months she will stop the L/P’s too. Then again we start the waiting game.

There will be no radiation. If God forbid she should fall out of remission… then it will be an option. But, as far as I’m concerned, she’ll have to be going through another BMT before she gets it. But according to the Doctors she is doing so great, and there isn’t another child out there like her to gage by, why tamper with it. So in closing this book- we’re staying the course, asking for your prayers to be added to ours to keep her there. Thank you so much for your attention… …. … HEY WAKE UP!!!

Martin

Monday, April 21, 2003 6:30 PM CDT

quarters quarters quarters quarters quarters quarters quarters quarters

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Welcome one and all…quarters quarters quarters quarters

<<< NEW PIC.’S … NEW PIC.’S… NEW PIC.’S >>>
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Still no word from Duke… May I suggest a few???

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Carolina’s Medical isn’t much better. She is off all chemo, yet they still want to do another spinal tap. It was set-up after the last one so it may just be an oversight. The Spinal Taps she gets include an injection of chemo. We’ll see… Maybe just pulling fluids to check?
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I trust every one had a good holiday. We Shively’s celebrate Easter. It’s that time of year when the rabbit comes out to hide all those eggs his girl friends has been laying. Hey, if I was a rabbit… I certainly wouldn’t want it known that my chick is … well… a chick.

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Out here in the East it has been quit rainy. I have been asking people if it has been forty days and forty nights… As usual they look at me as if I’m stupid and they move on. It’s OK… I’m use to it…(sniff) Due to all the rain our egg hunt was an indoor event this year. Dylan being ten got areas 42” off the floor and above. Our still vertically challenged Miranda got from o” to 41 31/32”. In one of the collages you’ll see Miranda on the couch breaking our rules. So I thought anyway. Pulling out the tape measure… it measured 41 63/64”. We had to amend the rules to allow for the 1/64 I missed. GO FIGURE!!!

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I’m sure country wide grocery stores affords some type of awards programs at holidays. “Buy fifty dollars worth of groceries for 51 weeks and we’ll give a free HAMmmmmmm”. OK it’s only 8-10 weeks. Sigh… we got our free (Buuuuuuuuuuuuuuuuuuurp!) Ham (giggle giggle) Leftovers are residing in the freezer next to the leftovers from the Christmas turkey.

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Miranda really seemed to enjoy hersself when it came to coloring the eggs. We only had a Dz. And she was prepared to do at least four times that. That Dz. Eggs turned into Deviled Eggs and potato salad. Her eyes perked up when she saw eggs with a touch of red and blue on them. You think she tried one???

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Well, as soon as we have heard anything I’ll be sure to post another entry. I will any way in a few days (wk.’s) sooner if there is some thing juicy.

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Martin ( quarters quarters quarters quarters)

PS. Man I for got to mention anything about the quarters... sorry next time.

Sunday, April 13, 2003 11:00 PM CDT

I suppose if I were to sign-up for a procrastinator’s group therapy session… I’d put that off too. Sorry, but you’re left with what I can give ya’ll. However, I am going a different route in writing these updates. Everyone out there who writes these entries knows (including me –even if I don’t want to admit it) that it is easier to type it out in ‘Word’, and then copy / paste right on to the entry page of the web site. That way you don’t have to worry about any cyber-gremlins or being timed out of the site. Not to mention there is a really neat thingy-a bob called a spill check. (Please note it didn’t catch that) So why haven’t I used more religiously? Dah-no!!! Hadn’t really had too many problems. Sat down last time and lost an hour and half of typing and that made me a permanent believer!!! Anyway onto Miranda!!!

Actually there is no real NEW news to pass along. We’re still waiting to hear back from Duke to see what the next step in this insanity we call life is. All the tests thus far have come back clear, zero, negative… you get the point. Gail and I are thrilled, ecstatic, beside ourselves… YGTP (you get the point). Dr. Martin is checking with another Dr. about Miranda. What they intend to do now (possibly!!!) is fractionated full body radiation. It is intended to cover her head and her whole central nervous system on down through her pelvic region. Its purpose is to get any of those nasty MLL genes floating around. They have a tendency to hide around those areas. Now, if you want to talk about some thing scary. This is it!! IF she has it, she could come through just fine. She could also have mild learning disabilities. Then again, it could also cause severe mental retardation. Why don’t we just give her a gun and teller her to go play in the corner? She’s already been playing Hot Potato with Leukemia for over two years. Do you get the idea this scares the shit out of me? She only two, three next month. Anyone who’s been around her will tell you how smart she is. How personable she is. I can’t see doing anything to change that. And don’t give me that line about ‘if she needs it’ either. Who truly knows any more what she needs. Gail’s line is,” We’ll always be second guessing ourselves no matter what we do”: my line is,” Only if she is giving us a fit ten years from now will we know we’ve made the right choice”. You know, you can go to church, pray about it all, scream rant and rave, watch all the ‘Touched by An Angel’ episodes- and still not know what to do. Devine intervention… what a concept. If it is truly what it is… nothing out there to tell us different…why doesn’t it come in a neatly sealed card? I know why it doesn’t – I’m venting here. So … when are we to take this ‘leap of faith’? Either way it takes faith. No tunnels maked,’sorta faithful’, ‘faithful only on Sundays’, ‘Faithful 24/7/365(366)’ and at the end of each tunnel… there still won’t be the answer we expect. Hell, give me th…

Miranda… another concept to be dazzled by.
She will make you laugh, cry (usually from laughing at her these days) and angry with her- all within three minutes. She forever wants to stay out side. Naps??? ‘No waaaa’, (way) basically if it interfiors (note- spill check didn’t have a solution for this one) interferes (looked it up) with being out side… she wants no part of it. She will walk you, talk you, and play you, read you, and aggravate you till you drop. And we love having her here to do it. If there is any way at all to keep her like she is we’re for it.

I’m going to make another plea here….
WE WANT YOUR QUARTERS!!! We got two responses to our plea last time. One about two or three weeks ago, telling us to use the check enclosed for Miranda and to worry about the quarters after Miranda is healthy. The second one was from a group in Winston-Salem, NC. I hadn’t really forgot about it… just kinda let it go. Well let’s try again shall we? If you want to send a check, I will promise you that every quarter will go in to the 5-galloon water bottle. I’m not going to turn down checks for Miranda either, however, She is doing great right now and I want do something besides sit here and gloat/ vent/ rant and rave. We want all your prayers… now we want your quarters too!!!! As I update the pictures I’ll be slipping in one with the water bottle. Just to keep you up to dated. Look we have had help from just about every direction… and we still need help I’m afraid to say. But this is about helping out the dozens of children up at the hospital. I also want to do a cartoon-coloring book for them too- so if any of you know how to get that going let me know!! Got the talent for cartooning…. Just not the publishing part. I want to hear from you guys on this!!!! I’m also hoping that this will take our focus off into a different direction. It might be a good distraction.

I will try to get new pic.’s up this week one of them being the 5-gallon water bottle. Hope I haven’t bent too many noses out there. If you have ever enjoyed reading this dribble I type, or enjoy the pic.’s of Miranda, please send what you can. And remember to include a guess at the total amount in the bottle. We’ll donate it in your name.

Martin

Tuesday, April 8, 2003 10:57 PM CDT

.............. 0% MLL in her blood !!!............

.............. 0% Host cells !!!! ................

.......<<<<< 0% MLL IN HER BM !!!!! >>>>>.........

...*************** OFF OF VP16 *******************


OK folks, I've already tyed for an hour and a half and lost it all. @#$%^&%$#@@ cyber- gremlins !!!!

I WILL get on tomarrow and elaborate more.

The short of it all is Miranda is doing super-D-duper!!!!
like she just got out of duke the first time.

Vp16 was stopped because too extensive of a period on it would actualy cause her to relaspe with Luekemia.

The Dr.'s are stumped too! Said they don't know of another child like Miranda ( I could have told them that!!!)

We still have more talking to do,as in where to go from here- But at this moment all couldn't be finer,

see ya tomarrow, Martin

Thursday, March 27, 2003 9:10 PM CST

................. BONE MARROW ..............

....................CLEAN...................



................. BLOOD WORK ................

.....................CLEAN....................


.................SPINAL FLUID.................

...................CLEAN......................

.........BONE MARROW SENT TO DUKE.............

..... (may take an act of God before we hear).....


............{ happy Chanda? }....................

All the above was from Monday. We just heard today the Bone Marrow was clear.


Miranda did go to clinic today to have her Hickman checked out. Right at the entrence into her chest you can see it has turned red. Gail said they want her to put a small amount of Neosporine on it and keep an eye on it. They also said to put a piece of gause on it to help with irritation from the decaderm. Let's see...... last tme I looked gause wasn't transparent. And those decaderm packs are numbered ( only sent so many) So it wouldn't be easy to change every day. OK OK OK ...... I'll stick to shaking my head yes when Gail talks to me and I'll go back to making my cabinets.

We should hear back from Duke sometime next week. Pardon my sarcasism - Friday about 4:55pm - as they're ready to walk out of the office. This is the test for the MLL gene in the Bone Marorw.

If you have been following along in the Official Handy - Dandy Miranda Hand Book you know that she is doing great. Can't tell you how happy and please we are Duke can't set in front us paperwork telling us why Miranda is doing so well. Gail and I are happy to leave it with devine intervention. I'm fairly comfortable to speak for Gail when I say we wish and pray more kids to have Miranda's "Miricle" recovery.

I have come to realize quit alot over the last couple of years. Not that I didn't realize them before - they just hit closer to home now adays.

Paradoxs By Martin
1.) That money is NOT the most important thing ...... unless you have a cancer kid - than all bets are off!!!

2.) That just because some one has a medical degree it won't stop them from using terms like,'Eecky' or'Thingy'

3.) Social Security is happy to help out those in need as long as you fall in '$500.00 a year or less' bracket. OPS! you made that last three months combined.... we over paid you $5,785. We will be taking $35.00 of your $37.00 check till we're paid back.

4.) why is a bra singular and panties plural ?????!!!!!

5.) It is a good thing there is a hospital attached to the cafeteria.(Mercy South ......... NOT CMC)

6.) Health Ins. It has to be good ........ it cost me more a month to keep than my morgage.

7.) Computers: Are only as smart as the person who operates it. (from the other room we hear Gail say) Great, now there's two dumb @#%$^* sitting at the desk.

8.) With all the side effects of Chemo .... why does one of them have to be eating away at the enamel of my daughters teeth???

Martin

Sunday, March 23, 2003 9:17 PM CST

............... NEW PIC.'S ...................


Miranda is still doing GREAT! She is fast becoming an outdoors-kinda-girl. She will pester you till you take her out or put her in the corner. That usually happens when her mood is greater than her might.Though she is gaining weight( 30 whoppin' lbs.) her mother and I can still take her. What is hard to take is her wanting to go outside and not being able to. I.E. : This morning she was fine with the idea of going outside at approx. 6:30am. The powers to be (AKA Mommy) Veto'd that one right from the get-go.

Put commercial here:

airfare to St.Louis- including 1 1/2 hr layover in chicago that stretched into 4 1/2 hr.'s. Getting to go through security and getting patted-down by Bubba instead of Bubette. Going outside @ Chicago to smoke and finding must of the people look like they're connected to the mob.(Every one wears black leather) Getting to go BACK through security and winking at another Bubba. (didn't work- Bubba still patted me down)Landing @ St. Louis +/- 4 hr.'s late....................... $0.00

Trip to Il. ( 1 1/2 hr.) to see Mom and have couple of hours with her ...................................$0.00

Spending time with my Dad, Babs, brothers, sister and related children; and going out to eat after gorging ourselves @ lunchtime .......................................$0.00

Having family that will fly you out , give you a car and send you packing cause they're tired of you ..... priceless.



Some times women (Gail in this instance) just don't appreciate the male version of humor..... ( no I'm not talking about the above-but we'll see after she reads this tomarrow) What am I talking about? well, About a week and ahalf ago we set out acouple mouse traps because we found some mouse-evidence. So about 4 am. in the morning she wakes me up telling me that there is some thing rattling behind the china cabinet. Sure enough! it was kicking and scrambling for all its worth. It was the biggest, meanest blood-thursty field mouse I've ever seen!!! The problem with this particular mouse was that it wasn't quicker than the trap. It got caught round the leg and the mouses version of its ......... tail. It was using the other three quit well-trying to get the "tail" out of there. I check the other trap and found the slower version of a field mouse caught in it. Slower? YES !! It was caught right between the shoulder blades. With a Tim Allen Grunt (A-u-r-g-h) I pulled it out and threw it away out side. Back to the live one.... wait.... where's my audience? Gail bless her heart is in the living room in the rocking chair with her feet up in it. Smiling I go back to work. Pulling it out, it is still "flopping" around. I head for the door to throw it away. I do stop by the junk drawer and pull out the hammer and head outside. The hummor she didn't appreciate? She asked me if I killed it and ofcourse I said yes. I proceeded to explain that I folded the trap over the mouse and in good Chicago mob fashion I "Whacked" it. I also explained I did it that way because if we have to wash our hand everytime we walk through the door- If I WHACKED a mouse with a hammer, that the hammer would have to be burnt before it would be allowed back in the house. Again,she asked, " are you sure?". In responce to the question," Well, it was doing this," I procceded to lift my leg and shake it like a dog getting it's favorite spot itched. I don't get it .......... every guy I've told laughed. Women go figure.......................

........................Martin +2
general field mouse population -2


Again, Miranda gets a BMA tomarrow and a spinal. We should also find out the rest of her protocal. VP16 can actually cause Luekemia over an extended period of time. Part of the BM Asperation will be sent to Duke for further tests on it for the MLL gene.

Things are looking good for the moment and we are thankful

Martin

Tuesday, March 18, 2003 10:17 PM CST

OK before I get locked-up for the third time- read fast cause I'm racing evil computer grimlins.

MLL is a gene not a cell..... see what you get for believing everything you read? Especially here!!!!!!!!

................ 0 ........... MLL genes in Miranda's blood work from DUKE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! great news !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


We are also awaiting the DNA test to see if what her percentages of Host cell ( Miranda's old cells ... Bah, Yek, Phoey... don't want) vs. Donner cells ( Fan Fair... TA Dah !!! RAH RAH ... goood stuff) < get the point?> And YES I have that for you too. Now do I make you wait?????


So here it is:








................... Host cells- 0 %
................... Donner cells - 100%
................... general fieldmouse population in Matthews Nc -2.... ( More on that later )


This is UNBELIEVABLE!!!!!!!!!!! Miranda is a certified Miricle child!!! I've got all the paper work to prove it. Bills,etc.


This coming Monday she will have another Spinal and a Bone marrow aspiration. Part of the BMA will be sent to Duke to see if the is any MLL floating around in there.... more waiting - GRRRRRRRRRrrrrrrrrrrrrrrrr. Expecting good things though.

They are thinking .... or were ... thinking of doing radiation on the spinal column as a preventive measure. Now? who knows.....

Going to get .... don't want those Grimlins pouncing on me!!!!


Will have new Pic.'s by weeks end.

Thank you for all the prayers ------ keep'em coming!!!!

fieldmouse amusement will have to wait till next time

Martin

Sunday, March 9, 2003 8:53 PM CST

Yes.................. I did avoid the blue-haired old lady @ the library. The reason I ran had some thing to do with having a weakness for the smell of BenGay and support hose. This all goes back to when I was a child delivering papers to a resthome..... never mind .... that support group is on Tues. nights

Miranda was certainly feeling her "Spring Itch" these last two days!!! The development that we live in has a road that circles all the way around it. The only other road is ours and it dies into a culdesac. Now normally she is happy and content to watch life whisp by her via the front door. HOWEVER... these last two days have been especially nice out here in our neck of the woods. She was taken for two walks yesterday via the stroller. Again today she was taken around the block. Why the stroller? Because the whole trip around is JUST under a mile (.9375 mi. to be exact). Not really anything tremendous, except if you're holding a squirming Two-and-half year old.

On our walks she lets us know exactly where each doggy lives and exactly how each ones bark sounds. If they're not already barking - her high pitch caterwhalling attracts their attention and THAT gets them to barking. No, our walks are rarely quiet ones.

If none of the neighborhood kids are around we even let her play in the front yard ....~~~<<< w\o her mask >>>~~~ !!!!
We get back from our walk and are playing in the front yard when Mom pulls in from going to WalMart. Miranda, Dylan, a new kid on the block ( AKA Veronica ) and me are all out in the front yard folding and flying paper air planes. Miranda is the official paper-chaser-afterer. Once retrived she brings them back and deposits them in a box which contains a few houndred they made the day before. One look at me and knew I was in trouble,"Where's her mask????" Granted! She should have had her mask on ... but neither of the two girls were getting close to one another.

So then we go in and have Lupper (brunch in the afternoon)around 3:00. This girl was not going to be denied the great out of doors. She proceeded to get quit upset because she was not going outside. Yes,...... she did make it back outside. And when it was time to come back in she wasn't happy then either. I have a feeling we're on the verge of an aspiring Girl Scout in the making. Some how the view has gotten better from the other side of the glassdoor.

We're are still in a holding pattern waiting on Duke to call. Hurry Hurry Hurry Wait Wait Wait!!!

Wow after rereading this ... it actually sounds like a normal families weekend, HMmmmmmmmmm

Wednesday, March 5, 2003 4:16 PM CST

As usual there's good news and bad...

The trip went off w/o a hitch. Anyone that has been in the military is familar with the term 'Hurry-up and wait'. While there, we did plenty of waiting. A Hospital that big ... you would think they would have their act together better than they do.

My terminology ( not to mention spilling) may be off... then again what else is new???? Please bare w/ me as I muttle through.

The good news in a nut shell is... Miranda has a better chance than first thought. 5% chance of a cure has been thrown out the window. When she first relapsed back in Aplil of 2002 that was the percentage because of how close it had been to her BMT. She is now close to being 2 years post transplant. Alright 21 months. Her remission this time is going on 5 months and we are looking for 5 more DECADES at a minimum.

NUT SHELL 2 ...

We now move into the " Where is Miranda Stage" there is a cell called MLL. It is a cancer cell waiting to happen. A cancer cell is called a Blast... this is a cancer cell that hasn't blast(ed) yet........ confused yet???? anyway test one for Miranda is to see how many of these she may have floating around.

Next test will be how many Donor cells vs. Host cells she has floating around. Seeings how we got read of her cells (AKA the host) we want as high of a number of Donor cells as we can get. The % of this is important!!! the higher the number ( 80's, 90's % ) the less likely she will get another BMT.

all good news so far ...right?? :)

Bad news???? we have to wait til the end of next week to find out the test results on the test they've done.

More bad news ..... I'm at the Public Library because I'm still not quit the computer nerd I want to be. Mine is down and will be till my stupid problems are solved .... sniff sniff

That is pretty much it in a nut shell. I will try to get into more detail when I am at home on my own computer. Right now there is a blue-haired honey looking at me and I'm getting nervous!!! I'm outta here!!!! BYE

Wednesday, February 26, 2003 9:19 PM CST

Hello to all,

Miranda went to the Dr.'s Monday and again today. Monday was a regular trip and was uneventful.... ty ty ty ( thank you)...... She went again today because She had a fever of 100.5* over last night. Again this trip was uneventfull except that her ears are gunky... ( YES a true medical term)... Hard to beleive We pay thousands of dollars a year for Ins. to hear a well educated person say 'Gunky'. Or 'EEeeeecky'....(sigh).... whaddaya gonna do? The fact that all is reasonably well..... meaning we stayed out of the hospital .... is a blessing. For every action there is a reaction...right? OK we stayed out of the hospital... ty ty ty .... ofcourse this means we have the 'reaction' which is having to go to the Pharmacy. YEP ... WALLY WORLD (WalMart for you less sophisicated) This is where time slows to a crawl, families actually started in the 'Family Planning Area', divorse settlements hacked out in 'Lawn and Garden' and Labotomies done in isle 12 'Small house gaggets' AKA : an ice pick. All done because they had too much time on thier hands waiting for thier prescriptions!!!
Personally, if I had a choise between going to our WalMart Pharmacy and getting a ............ ah never mind, I know which one Gail would vote for!!! Finally, if you ever wanted to know if there was ever a female version of Dumb and Dumber... look no further.

Everyone mark your calanders for next Tuesday. this is when We actually go to Duke to have a talk about another BMT.

The smartest thing I could do right now is sign off and let it go at that. The biggest problem with the last sentence is that I used the words, 'I' and 'Smartest'.Two words not normally used to define me !!! Huh! imagine that. well, lets see... they told us that she had less than a 5% chance of another BMT actually being a "CURE" for her. That was before the last nine months of Chemo she has had. not including all the maintaince chemo too. It will be interesting to see what they say about her health and her odds. this time she would be old enough to receive radiation too. That just flat out scares the s**t out of me! Gail and I have talked about it and alot will be based on our conversation with Dr. Martin. How does one know which is the absolute best way to go. Gail, much to her credit, nailed it the other night. She basically said no matter what we do we'll always wonder if we're making the right desision. There will only be one right answer .... and that is if Miranda reading this herself ten years from now. I could live with that.

Monday, February 17, 2003 8:14 PM CST

.............NEW PICTURES ... all the way around .....

Most important ... Miranda is still doing super! Infact, she has even nailed the pronounciation of 'midget'... (minus the 'D' sound ... hey whadda expect for a 2 year old???) Now if you only want good news or the 'Happy thoughts' ... leave now... I Have more to pass on and some of it will be good. Some will be ramblings (SH-hhhhhhh no comments that will hurt the author's feelings please)And I will start off asking a favor from all of you. And away we go...


If you read the intro ... I trust you have ... I 'ask for' computer parts and used (really used) cars. Now , yes I am kidding ofcourse- The cards, well-whishes, prayers and all is what I'm really after. The reason I put the our address up there is for the following:

Gail and I are not in the position to contribute to area/ or national Cancer Assoc.'s. One day down the road we will- just not anytime soon. In order to keep bringing you this, never ending source of bordom, I broke into my piggy bank to see exactly what I could afford to 'UP-GRADE' on my computer. Basically it amounts to ... I can afford a ream of paper. My piggy bank happens to be a 5-gallon water cooler bottle. I want to fill it up with nothing but Quarters!!! this should only take a few decades of pocket change. I have a ball park figure of what it should equal when filled-up. But while I go through this with Miranda I'll never be able to afford the $ to fill it up. This is where all of you come in .... I want you all to beat the bushes, raddle the cages and scream from the highest mountain,"we need money". First of all.... I shall be the collector .... not the spender!!! Once filled I want to donate the $$$$$ to a couple different groups. Any one sending ANY amount-I would ask you to guess the total value of a 5-gallon water bottle filled with quarters. If you 'WIN' ... we'll donate the money in your name. Hit the guest book and tell me what you think of the idea. I think I can manage to dump quarters in to a water bottle. A week from now ...pending on responce... we'll see if we can kick it off. If there is a really good responce we'll start acouple more bottles: Martin needs a labotomy fund, Miranda and Dylan's 'we need a sane Daddy fund', .... you get the picture .... let me know what you think OK?

We did, in fact get CMC today inspite the ice. Duke is willing to do another BMT and we will be going there next week to 'TALK' about it. There is such an aray of things running through our heads that listing them all would really bore you and bring me to a new level of phycosis. alright check back in a couple days... I'm sure I'll vent.

Got to go and reduce some pic.'s so Miranda's follower won't scalp her Dah Dah. for not having them in her photo albums. Night

Tueday, February 11, 2003 10:37 PM CST

Hello to all...

Sorry no new pic.'s ... then again the ones that are here are so adorable....

I had hoped to have some word for ya'll about Miranda getting 'rechecked' for another BMT. SIIIIiiiiiigh... ( I don't) This coming Monday I will be going to Miranda's check up with them so our options can be "Reviewed".

Miranda is quit the little Princess... She'll scowl at you and call you her latest - newest word,'Midget'. Ofcourse it comes out closer witchet... some times the 'W' comes closer to a letter really close to the start of the alphabet.Actually this is the way it usually comes out....so we don't incourage this particular new word.

She is suffering from a double ear infection. relax... this only means that both her ears has an infection. Not that each ear has two different infections ..... Sheeezzz .... who would actually think that ??? OK yes Gail did straighten me out. She's on antibiotics and they are about as hard to get into her as her Chemo. She has learned to run away at Med time.... this isn't new ... just wondering when she'll figure out NOT to run into a corner to 'get away'.

Ok on this happy note I'll say so long ... will try to update again before next Monday .... with new pic.'s too ... well ... let's not push it. But I will try ;) Martin

Sunday, February 2, 2003 9:23 PM CST

Sorry ......... A day late as normal... don't EVEN want to talk about the dollar!!!

After two days learning to work a computer program I have reached a new personal height in my quest in computer geekdom. It is for work so not only do I want to ... I kinda had to. I Don't know how to put music on her web site ... but I can sure as the world build a cabinet on my computer.

............. YES NEW PICTURES.............. (sorta)...

As you can tell by the pictures Miranda is doing great!!! She is getting to be two handfulls. She continues to brighten our days with both of them too.

Last Monday Was her L/P and as you know it came back clear. Dr. G put a bug in Gail's ear. Fear not it wasn't too big of a bug- atleast she said she didn't squim too much. It was after she left and got home and we sarted to talk did any of the squiming take place.... This bug is one of those that you want to stomp on but can't quit get yourself to do it. You see the Doc wants to call Duke about re-evaluating Miranda for another BMT! In his words he is amazed that Miranda is still with us. Throw back to the odds that she has been beating left and right. Even the half remission aren't keeping my girl down. And now ... are we to put her (and Mom) back through another houndred days? Back through all the Graph VS host ... All the other side effects that come to mind that I can't spill (spell). We do all of this and what are her 'odds'? Back to Dr. Martin's either she'll be 100% or she'll be 0. Still sounds like 50/50 to me. with the odds leaning which way? They said another BMT would only give her a 5% chance of it actually being a curer. With her history of continued Chemo ...does that increase her for problems..... How will all this effect her organs? She's over two and half now so radiation treatments are an option. Again ... she survives this but then there's brain damage.

Gail and I have approached the idea a few times during the week. I think neither one of us want to really deal with it right now. Having to do the physical to see if she can withstand another BMT is one thing... talking about it is another... but actually having to go through it all over again is quit another.

So all of you who are not fellow Cancer Parents... next time you get to watch the St. Jude Program. Watch it real close ... then ask one of us Cancer Parents what we think of it. Maybe it's just me...

I'm getting off before I start off on a tangent I don't want to go.

I don't know which way to go from here. Gail will talk to Dr.G tomarrow and from there I'll probably get on and ramble some more. Martin

P.S. I wear size 46 Straight Jacket... color optional but I prefer fuschia... to really irritate me please sew in a pocket for my ciggarettes that I won't be able to get to TY

Thursday, January 30, 2003 at 09:17 PM (CST)

Hello to all...

Miranda's LP came back ALL CLEAR !!!!!! She is put to sleep when they do the spinal tap. They use a med that they call' Mother's milk'. It really does look like milk. She looks like a little drunk when they give it to her. If she was older I'd say she gets a s**t eatin' grin on her face... But she's not, so I'll say that she gets an utopic,'I'm in Barney heaven ' look instead. She moves from 'Barney heaven to rolling her eyes to BONK.... out for the count.

Miranda is quit developed in certain areas. Her speach amazes me at times. She uses 5-6,or greater, word sentences. ok... some come out Bibble Babble... but the majority you can understand. For those rare times I don't understand Gail is there to translate for me :)

Where she has excelled in some areas she falters in others. I wouldn't say being two and ahalf yr.'s old and not being potty train is a real terrible ordeal. And in the 2-3 range is normal.... I guess- I'm guy what the heck do I know. Gail tells me things and I do the husband-ly duty and bob my head and move on to do her bidding... just at my oun rate of speed. Well Miranda is now well on her way to being potty trained. She received her training potty this past week end. Now she want to 'GO' evertime anyone goes near the bathroom. She has even taken upon herself to turn her 'potty' into a 'Port-a-potty'. If Gail and I would let her I think this child would drag it to bed with her. OK a bit of an exaggeration.

Life here on our 3/4 acrea spread is anything but dull...

More another night... Martin P.S. I'm going to update again Sat. (I hope) Nothing spine tingling just going to try and get some new pic,'s too....

Thursday, January 23, 2003 at 09:24 PM (CST)

Good evening sports fans... we're coming to you live from Shively's kitchen floor. In the never-ending search for top Sporting events... we are expanding our horizons beyond football... beyond baseball.... and even beyond the Super Bowl!!! Tonight we bring you the First Annual Nascar HotWheel 500 Race ( Veroom Veroom ).

As always, we'll get things started right after the singing of the Shively's household antheum. But first, a word from our sponcer.....

Moms.... do your lil' urchins scuff up your floors? Saaaaaaaaaaaay with hotwheels? are they riding those infernal scooters in the house too? Well we at Dud Labs have come up with your solution!! Announcing Mop& Prod! Just Mop as you usually do .... THEN bring out the Cattle Prod and see if you floor don't stay clean. If not ... ZZZZZZ ZZZZZZ .... and watch those lil' feet just scramble. Please note this product has yet to receive its approval from DSS.

WEEEEEEE'RE Back and ready for racin.... Ms Miranda will handle the singing of the Antheum

Ifth you happy and you knaAaaa ( stomp stomp clap clap ) Hurrr RAY! {general giggling} I Luvs youuuuu you luvs me Dah Dah.... dis much {her arms are spread far apart and Dad is smiling} and Miranda takes off to find Dyn.

Yes the race is about ready to start..... here they come into kitchen with two buckets-o-Hotwheels in their arms and

Crash dump ping ......... Ooooooh thats gonna leave marks on the floor. Them kids are good at dumping cars out .... shows you what practice will do for ya.

The race has be going good up to this point each child playing with their oun set of cars and they have been pushing some back and forth. Ofcourse as always Its never a race without a yellow caution. Dylan got a little too anxious and one of his cars got caught between the cabinets and the stove. Good recovery by Mom .... WOW what that lady can do with a ruler! We remain under yellow as Dylan sanitizes it w\ a clorox wipe and Miranda has run off to fetch a diappy. we'll return after this message from our sponcer...

Tired of having GAS!!! Tired of having to Dust???? Developers from GAS-X and from Pledge have put their heads together and have come up with ..... PLEDGE-X !!! (small fan fair Ta DAh) instead of getting rid of your gas .... a sapository is used.... five minutes later you're passing pledge throughout your house. You may not have touched a dust rag in months.... but it won't smell like it!!! Coming soon too is Clorox-X for your bathrooms. And for those really bad cases of gas ... "Honey I just mowed the yard-X"

We're back again .... the kids are sitting down racing their cars..... ut-oh we have a problem Miranda is stealing some cars from Dylan..... and ofcourse he doesn't like it. Miranda doesn't like him grabbing her.... let's get down there and see what we can hear.

"NO DYN!!!",Miranda saids. "Miranda Rae you have cars let me have mine back!!!!", Dylan saids with a little too much emphasis. "NO DYN!!! go oom no TT !!!"

Miranda isn't backing down from Majestic Lanes Intimidator. For those of you who just tuned in Miranda just sent Dylan to his room with no TV!!! got to love her spunk!

Mom is stepping in and throwing her oun yellow flag for supper. Both look at her and make fatal mistake by saying "NO!!"

Yep Mom is throwing the red flag .... this race is over .... whats this ut-oh Mom is pulling out......




yep the Cattle Prod. By-golly those lil' feet did scramble!!! Maybe next year we'll get through more than 15 min.'s of the race... until then Good-Bye

Monday, January 20, 2003 at 09:44 PM (CST)

Thursday, Jan. 23, 2003
At work .... updating with a entry tonight. It is far easier to upload pic.'s at work!!!! (DSL) See Ya, Martin






Tonight really aught to be quick ............. night!





ok maybe not that quick. Miranda had yet another really good check-up today. All her blood work came back great and she is being a little tempermental 2 1\2 yr. old. Moms good looks and Dad's temperment.... I can live with that!!! ( Keep the boys away a little longer I hope) Whats the saying? Have a little boy and you only have to watch out for him.... Have a little girl and you have to watch out for ALL the little boys!!!

Please check back on thurs for another update and NEW pictures. This ( Thump , Bang, Twerp ) computer has given me a run for my sanity- but, I've almost got it back to where I was.... HA! like that's saying some thing!!!

Next Monday Miranda will be going through another L\P and then she'll be off of Chemo for a week. The Chemo she's on is VP16 which is a maintainence chemo designed to keep herwhere she is..... in remission. See ya Thursday, Martin

Sunday, January 12, 2003 at 08:30 PM (CST)

A NO THRILL ENTRY TONIGHT

Miranda continues to do really well. Last Monday (6th) she under went yet another round consisting of a spinal tap, regular blood work and a Bone Marrow aspiration. ALL CAME BACK CLEAR ! ! ! !

I know its been awhile sence my last entry.... sorry. I won't go on and on and on and on ... about my computer problems... (thump, BANG, ping and twirp!!!!) Yes - I still have the old one next to the (HA) new one to abuse and vent with when the (HA!) new one gives me problems! OK OK OK ... most of the problems are most likely Martin-induced... however, as my knowlege increases.... my computer seems to be getting dumber.... is this normal? Has My internal CPU actually outgrown or surpassed the computers'??? HA ! LMAO THAT'll be the day !!!! Let's not even get into RAM .... if only I could stick in another 512k of RAM as needed.... Please no suggestions on where to sti.....

Miranda has fallen out of remission twice sence her BMT. On April 1, 2002... like a bad joke. And again last Sept. The Dr.'s said that each time she falls out of remission her times of remission will typically be half as long as the last. Did you follow that? I wrote it and I'm not sure... Each period of remission will be half of the last... how's that? When she fell out in April'02 that was 9 1\2 months. Fell out in Sept. it was +\- 4 months of remission. next time (now) should be +\- 2 months..... I'm ready to dust off my straight jacket... She was "pronounced" in remission as of Oct'02 .... lets see if my math is correct.... Nov. , Dec. , Jan.... I'm stumped ... what else can I type? When you have her smiling at you and laughing and giggling as any NORMAL kid does ... all is well. You drive back and forth to work and a country song hits a little to close to home... Cancer Sucks! I don't listen to country music as often either.

To all those who wonder how we do it... what choise do we have... Cancer Sucks

Here's to all those country songs that make you look like an snivelling idiot while driving... Cancer Sucks

Here's to having a child that would be picked over her father of a pro-mo for Rogain... Cancer Sucks!

Maybe I'll have more profound spins at a later date... Martin

Sunday, December 29, 2002 at 10:35 PM (CST)

..................Christmas Pictures.....................

Hope all is well on your side of the world.

All of us were here at the house this christmas and Gail and I were especially thankfull for that! This didn't, ofcourse, mean it was ALL that much easier for us. Shopping, wrapping (which I did little-snicker),finding out about the ever ellusive batteries, then it was where was all this going to be put so lil' fingers didn't find it.


One of the two was wanting a beating because he just couldn't get to sleep. By 3am Santa had came and gone and was able to grab a nap before the children...'Raised such a clatter'.

Dylan being an old pro at this went staight to it. Miranda was in heaven. All the toys laid out just had her mystified.
"Toys?.....mine?" after being informed they were indeed hers she grinned and said,' I like'.

She also sat down to exchange gifts to another bundle of toys and clothes wrapped up for her to tear into. After she was told it was ok to tear open the prety packages there was no stopping her..... well except the tape though.

She did get a Dr.'s bag or kit. It is amazing at how she knows at two and a half where all the equipment goes and how to use them. She picked up the thermoiter and went right for Din's arm. The scope to use in the ears\ nose and throat was properly use aswell. Listening to her new babys heart beat was second nature."sound goooooo (d)" After saying that she pulled the blanket from under the baby and dumped it on to the floor. No, she didn't even look back.

Dylan got a pair of in-line skates and a whole pile of other asorted things. He and I both like a computer game called WarCraft and I found action figures for it. They were not all that readily available either. He like them... how ever Dad was more impressed with them and wanted to play with them too, son said no (whimper)

Enjoy the new pictures, Martin

Monday, December 23, 2002 at 10:05 PM (CST)

Welcome one and all once again to Miranda's Web site. HERE ... 24\7\365 (366) all Miranda ... all the Miranda time !!!!

Once again we find ourselves making a list of all of those we owe a special thank you to. If you think you might be one of them......... thank you ....... if you're not .... well, try harder next year.

Somewhere in the depths of Miranda's mind there lives a fire truck. This fire truck is VERY special to her. Has to be .... she talks about it alot! Ask her what she wants for Christmas and she'll say,'Frrr tuck' and,'Phooze ball'. Keeping in mind her she is a female after all- she'll add on,'a baby doll'. It always strikes me as an afterthought though. I'll be the first father of a female Carolina Panther that makes an entrance into the stadium in a FRrrr Tuck carringing her baby doll.

Dylan being Dylan based his list off the TV commercials.... Yep! a commercial came on .... it went on his list! OK OK OK I'm exagerating a little.... or am I????? Much to his credit he didn't have to ask for any Harry Potter books .... not only does he have them all he also has read them all. Not bad for a ten year old, HUH?

All-in-all we have had a realy #%$@#%@$^$#^% year! There is no amount of "polishing" for that one. Infact I debated about putting real words in there. Miranda falling out of remission and all the things that have come along sence then. All has taken its toll. But when I come home at night and there is this over energetic ball of fun waiting for me ( any one out there think I'm talking about Gail???) All the troubles fade to the back ground.

We look forward to tomarrow and await what new little tid-bit she'll learns or amazes us with. Dylan use to come out 'D', now its 'Din'.... tomarrow it might be Quantum Physics.... (or another Barney song) We just don't know WHAT tomarrow holds for her. We love them the best we can and as often as they let us. We make plans for next week......... not months or even years down the road.

Yes this Christmas is VERY special. We are all here at the house. It probably doesn't sound like much and if you ask I might gripe abit about this or that. but we are here under one roof this Christmas.

To you the reader... Merry Christmas. Go out and hug a wood worker .... NO!! Go and have a goodtime with family and friends .... there ya go ... much better. From the Shively's

Monday, December 16, 2002 at 09:29 PM (CST)

>>>>>>>>>>>>>>> NEW PHOTES (sorry no colloges)<<<<<<<<<<<

Our miranda still doing GREAT!!! As you can tell by the photos she is quit a handful.

All the way to the Rainbow of Hope Christmas party it was,'Santa talk me ... Santa talk me.' Or,'I like immmm I talk santa." Needless to say when time came ---- "miranda run fast!!!" Some thing about all that red and the difference between being in person opposed to TV made quit a change of heart in her. Susan, a Child life(r), Who works for the hospital, is about the only stranger who can pick her up. Now she's not really a 'stranger'.... just strange-but there again this brings this ugly love\hate relatioship Susan\ Dad has going on and yes Gail knows all about it. ANY WAY.... Susan did pick Miranda up and sat on Santa's lap( POOOOOOoooooooooooooore Santa). She got down and was as happy as if she had sat on HIS lap. Dylan did get to sit too and rattle off his list- more about that later... We were able to get both Dylan and Miranda to sit on santa's lap one more time before the end of the night...hence the photo. Santa was wrapping (pun intended)things up ... when I tryed one last time to get Miranda to sit on Santa's lap... See last photo... and a good time was had by all....


Miranda went to day for a l\p and chemo treatment. All went fine and her counts were really up because she hadn't been on the VP16 for the last week. Typically, like this web pg., no news is good news. Usually if they find the cancer is back in her blood work or spinal fluid it is the Dr. that calls. If they don't find any thing-a nurse calls at their earliest convienience. And we still haven't heard back, sooooo....


Now my Boy Dylan... He is quit a piece of work. One minute you want to put him through the wall, the next you want pounce on him with velcro and duct tape.......... (no one from DSS is reading ....right?) He has moments of where you wish he would be like this all the time,(so far a normal kid,huh?) moments where you would actually want to hug him (not that he would let you\me) I'll let you decide which one it is this time...

Sunday, December 08, 2002 at 09:56 PM (CST)

Well MY Last frontier will be seeing how far I can kick this computer and seeing how much damage it does to my foot. Then again if I use a sledge hammer......

As you can tell I'm not too happy with upgrading to XP. All my software is either non-compatible or it is the hardware that is over in a corner whimpering over some little enhanced driver that refuses to play nice w\ it. So ... UP- grading is a proper term because I'm going up the grade all the way. Guess if it was easy it would be down-grade...... in any case I'm feeling a little DE-graded!!!

Miranda is doing great!!! Our Lil' fuzzhead is still full of her self. She will wave her little pork-chop of a hand and proclaim,"Follo Me, Follo Me, Follo Me." This usually indicates your on the way to her room. Now this could be because she can't get some thing down, or she wants you to play with her .... Then again I have found that she likes doing it just because she can get you to follow her.

She is forever 'Helping' in the kitchen. "Up You Me" means just what it sounds like. She wants up. With me, she wants up to watch the popcorn pop. Yes I can make popcorn and a few other things..... beyond that I might aswell go back to the computer.... and we all know how well thats been going.

Miranda also has 'Helped' us put up the tree yesterday. We also put up a small village that just threw her for a loop. "No Miranda thats breakable..." or " Give it to Mommy please" and," Isn't it time for your nap????" This ofcourse was followed by a prompt and resounding," No!!!

So as you can see my Miranda is still quit the little handfull. A joy to be around. She is the comic relief to a tough day at work. And as her vocabulry grows ...so do our smiles. If you ask her some thing she doesn't know she'll purser her lips, hunch her shoulders ,hold up her arms and say," Doh No".... translated: don't know.

I appreciate all who stop by. Even those who nag at me . Photos will have to wait a day or two because I still don't have a photo software that will play nice with the big bully cpu. Martin

Wednesday, November 27, 2002 at 08:09 PM (CST)

"Lost in Cyber-Space"

Our adventure begins with little Miranda Rae ... Robbins!!?? Her and her family On a quiet, peacefull, Five year mission ... To explore strange new.... sorry wrong spin-off.

Miranda Rae is quietly playing with her markers at the ships entry door window. She works quit hard at getting the milky way constellation in the right proportions.... some how it always looks like a bad candy bar accident.

From the back of the ship there comes a racket from the infernal robot ...R2D2.. ... (BEEP TweeeeEERRRP! BEEP Twerp! WHOOooooo ooOOOOOooop WhooooooooaaaaaaUuuuuuuuuuuub )

<<<<< "DANGER DANGER DANGER MIRANDA RAE" >>>>>>

Even more upsetting beeps twerps and Whoooo...

<<<<< "MS-Dos is coming ... MS-Dos is coming.... Run RUN ... OK in your case waddle!!!!!" >>>>.

With out any more warning..... MS-Dos begins .... First it takes over the ship's computer as a whole ... then it gets a feel for the lay-out and goes for the engines. The C-Drive - is now cloned in it's own likeness. Then it proceedes through the rest of the ship with a rain of Dos terror!!!!! MY GOSH!!!! IS THERE NO END ??!!??!!

It stopped as quickly as it started. Only remnants of fsteam <<< aggrevation>>>> remain from its havoc.

Thankfully Oz was only a hop, skip and jump over to another planet. Not only was he a fabulous wizard.... but he also had a PHD. from OopsSomebodygoofed University. He worked his 'Magic' and WhaLa <<<<(((( poof ))))>>>> All was as before.

The Time Warp lasted approxiamately 1.5625 weeks.... Things were the same ...but... not quit the same.....

The changes were going to take some time to get use to...
there were some things that weren't fixed and wouldn't ever be replaced.

We'll be on our own ...'FIVE YEAR MISSION'.... to learn new things, programs, how XP actually intergrates with all the other software .... or doesn't <<< SNIFF >>>

OK OK OK "UNCLE!!!!"

I Was trying to get drivers for MS-Dos to read my disk-drives and ended up reformatting my computer in MS-Dos. We're back on line and a (((( little )))) better than when we "crashed"

Miranda couldn't be better. She has even more fuzz on her head and is still holding her own. Last Monday she had a L\P and all came back great. Her ANC is at a level where we can actually go some where for Thanksgiving.

I will be updating her pic.'s Tues\Wed. of next week. Haven't got that collage down to a science yet.

OK Everyone brace yourselves............. I have a 19 year old daughter. Her name is Monica Marie Shively. She lives in Alabama. The Fri. after Thanksgiving I will be traveling down there to see her for the first time in over 18 years. More as things develope. No........ no film @ 11:00..... pictures aren't out of the question though.

Again Miranda continues on a course that looks quit promising and she is not only a joy .... but some one we all here are quit Thankfull to have brightening our lives!

Martin

Sunday, November 10, 2002 at 10:33 PM (CST)

<<<<<<<<< A couple of new pic.'s >>>>>>>>>


Miranda continues to thrive. Tomarrow she has yet another checkup at the Hospital. Last Mon. she got a spinal and a bone marrow................ ALL WAS CLEAR !!!! We're going on four weeks with out any hospital stays...... this is just an observation ........ not wanting to jinks anything!!!!

Miranda has again started to grow hair. So instead of a 'Munkin' head .... we're leaning towards peach fuzz head.

She has been on VP16 as a maintainence chemo and she'll be off of that starting tomarrow for a week. She always seems to 'thrive' for that week. The fact that she doesn't have to choke it down may play a big factor in it.

Miranda also continues to grow her vocabulary. 'Sure'... usually comes out 'SHOOOOReee'
'Ki Ki' stands for kitty cat ...... which could also stand for cookie, which is confusing if Ki Ki is at the door looking in and Miranda really wants a cookie. 'PopPop' ...again has a double meaning too. Either popcorn or pop tart. And don't let the time of day fool ya either.... this is not always a good gage to which she is talking about. Her next one is 'Shup'......... her shortened version of shut-up. She has gotten quit good at blurting it out. Now, with all of her problems its hard to have to correct her..... but you have to as an evil parent and trying to stay in good w\ the Assoc. of evil parents. You tell her that's mean and ugly and its a 'No No'. With her self-assured atttitude and her eyebrows raised ( no she doesn't really have any yet......... but this won't stop my story ) She pursers her lips and ............. "Shup", comes forth again. The head tilts to a quit beautiful 22 1\2 degrees and the smirk that only a father could appreciate. Even still punishment follows- a tap on the mouth that won't even brush off a Pop Pop crumb. ( you figure out which one). You would have thought she had lost her best friend and all her Barney tapes were demagnatized. Her little heart was SOOoooo broken. Ofcourse that lasted about two minutes and she was off to another mad-capped adventure as Ms.Ladybug ......... Aphids Beware.

There is a neighborhood cat that has struck up residence out side our door. It keeps Miranda quit entertained. Miranda will lean up against the glass door and the Ki Ki will rub up against the door. It quit the paradox for me too. ... Here is my daughter who can't go out .... and a cat who want to come in... and has tryed a time or two. Again.... no one wins.

Night Martin

Monday, October 28, 2002 at 08:22 PM (CST)

<<<<<<<<<<< Extra Collage awaits you >>>>>>>>>>>>>>>


NEW, Exciting, Vibrent, Action-Packed, Fun-filled,and Truelly a cornutopia of ......... well.......... pic.'s

....... There had to be a Gremlin ( not the car version either) at work in the internet last night. I tryed to update and add new photos for over an hour last night and it wouldn't let me!!! SHHhhhhhhhhhhhhhh ....Be wery wery quiet.... I'm hunt'n grim-wins ..ha ha ha..... BAM!! Got the ........


Miranda had a check-up today and all went well. She was a little low on potasium so we got her on a little to give her a boost. Other than that .... doing great!!


Sat. night we ALL went to a Halloween party for the kids from the Hosp. It was really interesting to see Miranda going from place to place, booth to booth, table to table all excited about what was going on at each place. She even got her first tattoo too. Ofcourse,I was surprised that she wasn't upset when it was faded from the bath later on. She really like her tatoo!!

We saw alot of our friends from the hosp. there too. Even ran into Judy there Dave. She saids she really misses you. Especially when the car broke down , the kids needed.... Gma needed.... HMmmmm this sounds familar....

Tonight we ventured into EUUUuuuuuuu-ville. It happens to excist inside of all Munkins (or monkeys).... or pumkins. It's all in the way she says it. Typing it just doesn't do it justice!!!! Got some really great shots of that too. Might just do another collage tomarrow of it.

Pictures in the gallery are, to date, my finest accomplishment!!! Chanda.... you gave me the idea...... I went to work figuring it out... and by josh I did........ I'll be comp.'r nerd yet!!!! You'll see what I did in the gallery. I was inspired by Chanda's site for Jake.


Now if I could only figure out how to upload a spill-cheek....

Night, Martin

Sunday, October 20, 2002 at 10:32 PM (CDT)

............... Most important ---->>>>> NEW PIC.'s


Other than being lazy and falling asleep on the couch when I should be updating this site .... I have no excuse.


Miranda came home this past Monday. Her fevers haven't returned and no we still- and probably never will- don't know what caused them. I, personally, think they may have been caused by her cutting some back molars. ok ok ok I'll stick to cabinets...

Miranda has returned to our little girl with bigger than life grins, a hearty soul shaking laugh and expressions that will leave you in tears laughing- even if she's doing a no-no.

Life around her is always an adventure. As her vocabulary grows our smiles do too. This week it was 'Munkin' or some times 'Monkey'. We have place matts on the table for Halloween and it took Gail awhile to figure out that when she was saying it- she was pointing to a PUNKIN on the place matt.

She still does her little run down the hall which still remains a cross between a power walk and a bad immitation of the twist- which by the way doesn't get her down the hall any quicker. It will certainly keep you entertained though. Then she'll stop and look at you as if 'Why aren't you coming?' I ask," You want Daddy to come?" and ofcouse she lowers her head and the second chin becomes bigger and she looks at you from under a scowl that reads,"DUUUUUH!"

That's all for tonight... Hope you enjoy the pic.'s .......... Martin

Monday, October 07, 2002 at 08:24 PM (CDT)

Guess where we're at again????

If you guessed the Hospital you would be right.

Its amazing to me how people ask the same question," How do you all do it?" I think I'm going to start answering it with a smile and," a straight jacket and hard liquor usually gets me through." and see what kind of responce I get. Now if my Pastor asks..............

As last night entry said Miranda had a fever and ofcourse when she arrived at the Hospital for her check-up she still had one. So ofcourse, BAM! Back in the hospital we go. Cultures were drawn from her lines to see if anything grows there and the usual blood work to boot. Though she has a central line they also have to draw out periphial(SP?) blood to which means she gets stuck w\ a needle. Ask Miranda what that is (the band-aid) and she'll whimper alittle and whine,"Boo Boo". Makes you feel like she thinks your going to do it again. I'll find out tomarrow on her fever-however, it seems to have broken for the day. By the time I left tonight she was smiling and laughing at any strange noises that I made.

not too many mastakes considering I have straight jacket on and am typing w\ my toes. I favor my left foot aswell as being left-handed. I get aggrevated though cause I can't quit get the bottle cap off yet and Gail gets mad when she finds out I've asked Dylan to do it for me..... go figure! Martin

Sunday, October 06, 2002 at 09:45 PM (CDT)

Not even sure where to start. Got new photos though :)


Miranda came home last Thurs. and we all have just kicked back and enjoyed the fact that we're home.

Miranda did run a fever of 101. tonight and we're watching that. She is to go in for just a check up tomarrow. All goes well they'll come home.

Being home has given me chance to get some things done. My 'Honey-Do' list evolved into a 'Honey-Do-NOW!' list. One which was to close the pool for the season. Every time Miranda went out on the back porch she would point to the pool and say," Dah Dah ing" as in clean. During the summer she knew the only way for her to get in it was only after Dah Dah ing'ed it.

Could type more dribble but there are other sites with other more profound dribble on it for you to read. Nite, Martin

Tuesday, September 24, 2002 at 11:12 AM (CDT)

>>>>>>>>>> We WERE home <<<<<<<

>>>>>>>>>> Now we're back in the Hospital<<<<<<<<

Miranda got home Fri. and actually spent the week end at home. I failed to update and to change her pic.'s ..... sorry. The whole time she was home she never did get to the point of acting like her old (young) self. She never had a fever though. She did act as if she was achey (SP?) most of the time.

Ofcourse, last night she started with a low-grade fever and this morning it was 101.5* This, ofcourse, not only sent them to the hosp.- but, admitted as well.

So as you might imagine, as for now I have no other news. I will up-date this to night if I do have anything of value to add. Pic.'s might have to wait a day or two.

Martin

Thursday, September 19, 2002 at 11:16 AM (CDT)

>>>>>>>>>>>>>>>>>>> ZERO CELLS <<<<<<<<<<<<<<<<<<


Found out Monday that there was no cells in Mirdanda's spinal fluid. Once again I find myself wanting to do a cartwheel ...... if only it wouldn't end-up being so obscene. Tryed to do it in private once.... tore up the closet so much it took me a week to repair it.

Miranda is still battling a fever. She was to come home yesterday.... then today ... now maybe tomarrow. All of us are just plain sick and tired of the hosp. !!! But for her.... it's the best place for her to be.

Tryed to do a couple of things at home on the computer. E-mail some pic.'s to people and to update site....... it turned out to be a night of internet hell. So here I am today doing it from work. Still have to mail pic.'s though .... will try to update pic.'s here on her site tonight when I get home.


Later, Martin

Sunday, September 15, 2002 at 10:09 PM (CDT)

WEeeeeeeeeeeeeeeeeeeeeeeeell... We're back in the hospital again. Arrived yesterday (Sat) around noon. Fri night she run a low fever, by morning it was 102*. Now we have to hang out till we find out what is causing the infection. Then again, we may never find out. They did cultures on her lines and they came back today.... negative.

Tomarrow she is also scheduled for another spinal tap. 9:30 She will be put out again so they can draw off fluid aswell as give her the Chemo. We patiently ( like we have a choise) wait for those results too. We are expecting great things. Went from 1800 cells down to 60 cells- why should we expect it to be gone???? obviously, because that is never the way it works. Not a bad thing to pray for though !!!!!! As suttle of a hint as I can give :)

More tomarrow, Martin

Friday, September 13, 2002 at 07:56 PM (CDT)

Tonight we come to you from our humble computer room/ bed room/ library/ … Well, ok I always come to you from here, but this time I’ve got company. Miranda came home this past Wednesday. Yes … They made me bring Gail too. Not complaining cause she is really good with the kids- not to mention a walking book of knowledge of Miranda’s med.’s … Better hold on to her, huh?

Miranda’s white count remains low and because of the Chemo her other counts are suffering too. She may have to go in Sun. for platelets. That is only a couple hours detour though.

We remain hopeful that the last round of Chemo has put an end to any remaining cancer cells. After all she went from 1800 down to 60 in one treatment. Last remaining few ought to be easy, right? Yeah…. Well this is where hope, faith and prayers come in. So keep them coming. Next Chemo is Monday… We’ll let you know!

That’s all for tonight… Martin

Tuesday, September 10, 2002 at 11:06 AM (CDT)

Last Wednesday Miranda received a Spinal Tap to find out what was going on with her. They found out that there was cancer there. 1800 cells per ?? to be exact. They went back later in the morning to inject a round of chemo. Yesterday she received another. Two reasons. 1.) to do a lab to find out how the chemo from last wednesday was working,and 2.) to give her another round of chemo.

RESULTS: Last Wednesday = 1800 cells

RESULTS: Yesterdays = 60 cells

Some one upstairs is really watching out for Miranda.

What happens from here? Wk.'ly spinal taps to inject chemo. How long this will last maybe any ones guess. Thankfully, Miranda is put to sleep for each LP (spinal tap)

Again the Chemo is taking its' toll on her wht. count and her ANC. Wht. count is down to around 1000. ANC is around 456. Neither of these are good. Until they increase I'm not sure when they will send her home; Might be sooner than I think.

Jordan has received a pair Grand Parents... Again I don't know all of his circumstances ... but it seems to be improving.]

At work will add more tonight if worth putting in, Martin

Saturday, September 07, 2002 at 09:28 PM (CDT)

--------------------- NEW PIC.’S ----------------------------


All things considered it was a good day for Miranda. Her mornings always seem to start off rough, but by 9 or 10 in the morning she has leveled off. If she hasn’t by that time it can be a pretty rough day. As you will see by the new pic.’s - today was a good day.

I wish I could just leave it there and let everyone go their merry way. Miranda had a super day. But there is another little child on the floor that didn’t. And maybe because of what Miranda is going through has heighten my awareness; I just saw this little boy and wanted be there with him. You see Miranda has Gail 24 hours a day every day. She has brudder and me every night and all wk. End long- this little boy seems to have no one but the nursing staff. I have no idea of all the circumstances surrounding this boy but I found out enough to know it isn’t good. His Father isn’t allowed to see him. And his mother sees him occasionally-as in once or twice a month. What is wrong with these people? This is a 19-month-old baby with Downs (sp?) Syndrome and has already had more operations than most of us will ever have. It just turns my stomach.

So when you say a prayer for Miranda … pray for Jordan too. He may need it more than Miranda … He apparently has to go at it alone. Martin

Thursday, September 05, 2002 at 10:08 PM (CDT)

Tonight is not a good night for me to be sitting here typing. Tonight I might just write too many honest heart-felt thoughts. I was given a piece of advice about keeping this entry short. This way you all get the info… And I don’t have to totally relive the last two days. Won’t this be an interesting experiment?


When I look into my daughters’ eyes and I see mischief … I smile. When I see her having fun and laughing… I thank God that she has had that experience. When I see my daughter stretching to look out the window at other kids running and playing… I pray that it will be her too one day. When I hold my daughter in my arms and her eyes roll from sleep to not-quit-awake and back to sleep… for those few brief seconds I know she trust me. I know she feels safe and that she loves me. For in those few brief seconds I may get only a sigh or a flicker of a mischievous smile and on occasional pat on the side of my face. But it is enough… and I just know.

Miranda came to us as a surprise and she hasn’t stopped sense she was born. I guess all that she has gone through … nothing should surprise us. So why were we so surprised when her cancer came back? Why were we taken back when they found it in her spinal fluid?

Miranda had a lot better day today than she has in the last three or four. Head aches and throwing-up sent us back to the hospital. On Wendsday she was put to sleep to do a spinal tap and a bone marrow check. Bone marrow was fine…. Spinal fluid contained 1800 cancer cells. Their presence had caused the head aches, stomach aches and the throwing-up. She was given chemo directly into the spinal column. She has also been put under another regiment of treatment too. All of these have made an improvement in the way she is feeling. She was actually sitting up playing with stickers that Susan had brought to her. We went for walks and a couple rides in a wagon.

We hope and pray that the chemo wipes out the majority of the cells in her spine. It may take two or three treatments before they are all gone. After that she will get a weekly spinal tap with chemo to keep it away. I wish I could say for a fact that this will buy us another year with her… it won’t. Each day will be special. And if it stretches into months like we hope... what more could we pray for?

Martin

Tuesday, September 03, 2002 at 08:49 PM (CDT)

Today we come to you with depressing news. Miranda was hospitalized yesterday. We were all enjoying a lazy rainy weekend. There were movies to be watched… which included a few hundred viewing of Barney… popcorn to be eaten and wet spouses to be laughed at. Miranda has kept a runny nose for quit awhile now. Sunday she also had about four episodes of throwing-up. GREAT! Now what has hit her??!! Gail gave her some Med.’s for that. And we watched her through the night. On Monday things weren’t looking too much better and … WhaLa … back on the seventh fl. we go.

They did a CT scan… and found nothing in the way of blockages, growths or abnormalities. There is lot to be said for her … with her relatives being who they are … and coming out of that w\ a clean bill of health!!!

So as we hope you will keep her in your prayers… we also hope you will say one for the whole Seventh Fl. of CMC.

Yo Jake………… Jake and Miranda sittin’ in a tree … K*I*S……

Night, Martin

Sunday, August 25, 2002 at 09:09 PM (CDT)

We are back in NC. and doing fine. It is amazing how you look forward to getting the heck out of 'Dodge'-but, how good it really does feel when you get home.


We were afforded a week stay at Myrtle Beach by a group there called the Jason's House. It is really a church that does it. However, that is the House of the Lord...... so who is going to argue.


They were very nice and supplied us all with everything we would need for a wk. there at the beach. The Hotel was the Sea Mist- ocean view. they had entertainment lined-up for us -IF we so chose to. And meals were taken care of by area reasurants.

( side-bar: given the chance and you have the appetite- a must would have to be Crabby Mike's Seafood. I almost needed a lifeguard there cause I was drowning in seafood, prime rib, beef ribs, Crab legs ...........yes- all in one meal.)

Dylan took to the water like a fish- as long as he could touch the bottom. He hooked-up with some kids from Ohio and was in heaven.

Miranda wasn't as fortunate to be able to be around all the kids- but she was certainly entertained by her new found surroundings. Sand was quit the experience for her. Picking up wet sand and it dribbling through her fingers left her saying," EEEE-uuuu". The sand rushing out from under her feet also left her with a few hundred questions in her eyes. Shells in the sand was a new found treasure. Is it instinct or what- kid + sand + seashells = collect as many as we can!!!!!

Well, That is the basic recap. New pic.'s to see too if all goes well up-loading them

More later, Martin

Saturday, August 17, 2002 at 04:10 PM (CDT)

All is still well here on our 3/4 acre spread. I guess if it weren't I would put more entries in. Soooooooo, the lack of entries is a good thing? YES! But, also means I'm am lazy and inconsiderate to all of Miranda's followers/ fans. Sorry.

Gail looked at me like I was stupid the other day. It was Dylan's Birthday and I told her that I ouwed her a dollar. Ofcourse, she asked why. And I explained to her that we always bet that Dylan would never see ten as mean as he is. Well he got to ten and is looking forward to the next ten.

We are heading off on another adventure tomarrow so the next entry won't be till next wk.end.

Miranda still amazes us day-by-day and is getting more daring by the moment. Case in point- Gail had gone to WalMarts to pick-up a few things. One minute Miranda and I are playing on the floor. The next she is climbing into a booster chair sitting in a rocking chair- doulble the trouble !!!!

Well if I have a chance to put an entry in I will ..... but don't really expect one till next Sun.

Love to all and stay well, Martin

Monday, August 05, 2002 at 11:01 PM (CDT)

Tonight I come to you with a heavy heart.........

NOT because of anything being wrong here at the house...

Not because of the departure of Gpa and Gma Babs........

Not because of my travels down memory lane reminded me of all the neat 'STUFF' I didn't get as a child..........

None of those has weighed me down........... WHAT HAS weighed me down was the fact that I SOooooooooooo do want to be a computer nerd!!!!! For if I was, I could have brought you a pic of Miranda out of my computer and splashed upon the opening page for all to look at.



C:\Program Files\ArcSoft\Software\PhotoImpression\albums\Home\reduced pic.'s\IM001179.JPG”>



Instead, you have what is above that lets you know right where to go if you're ever sitting at my computer.

Well I shall go up load a few new pic.'s ......... you just won't see them here on the front page........ (sorry)

Martin

Sunday, July 21, 2002 at 09:59 PM (CDT)

tonight aught to be quick. Everything with Miranda is great. Everyone else is still vertical and maintaining an even keel. Also I might add that there isn't anything depressing to type about either :)


C:\Program Files\ArcSoft\Software\PhotoImpression\albums\Home\reduced pic.'s\IM001179.JPG”>

Sunday, July 14, 2002 at 09:58 PM (CDT)

It all seems abit crazy. Life continues here at the Shively's household. One struggle here........ another there. One battle coming at you and you know the war has yet to begin. You put out a fire with you're trusty pale of water- yet there is an infurno brewing behind you. How are you to deal with all of this and then throw Luekemia on top of it all?


Miranda and Dylan- simple enough - But they are the straight jacket of this madness.


Miranda's smile melts alot of the worry away. For how could one so loving, so happy and so care free have anything wrong with her?!


Ofcouse it is ever-present . 'Did you get her mask?', or,'NO! She can't take a taste off that fork you using', and'Did you wash your hands?'....(classic in this house)...
all these and more ..... such as her cute lil' cueball head .... are all testiments, all is not right here in the Shively household.


It is difficult for her too. Not being able to go jump in the 'pooh' any time she wants. Seeing brother run out the door to go play leaving her at the door to stare after him. She looks back at us and point outside and says, 'Shoos' . She gets to out when we can take her though.


At times all she wants to do is go. Gas is still relatively cheap! So we go! Some times even the drives are hard to take. When she was just Diag.'d as coming out of remission we took her for a ride in the country and drove by some horses. In her world all animals are 'Coco'- after our Dog named this same. She points at them and shouts 'Coco Coco Coco". I slowed down so she could get a better look and then it dawns on you............ She may never get to ride a horse as I did. She may never even get to ride a pony in a circle at one of those fairs......... and you lose it.


Dylan is and will always be Dylan......... the two of us were cursed by him being too much like his father. Why would I want to deal with myself???!!! He brings frustration
and comic relief to all of us. There is too much on a daily basis to even go into here!


We went for a drive to day............. see pic.'s and you see where we went.


Some times I re-read these and think they should be sub-titled,'Ramblings of a Madman"


Martin

Sunday, July 07, 2002 at 08:39 PM (CDT)

Tonight I have no idea what pic.'s will be added- I do hope you like them though and look forward to reading your entries.

Over the fourth we had relatives in town from Kentuky. We were busy as usual and then throw extra bodies on top it all --- it is a wounder we survived it all. It was good seeing them ; but when you go so long without a housefull due to obvious reasons it has a way of overwhelming you. OK- me.

Miranda took it all in stride though. She loved having a cousin that would play with her. She is six and they took turns following each other around.

Miranda did have abit of sensory over-load though. Even for her you could tell she wasn't use to having that many people around and no mask on.

Miranda see's Dylan and all in the pool and she wants to - ofcourse - be right in the middle of it all. She would - and still does- look out the back door window and says,"Pooh... pooh". We do let her into the pool as long as Gail or myself are in there with her. She stays in there for about 15-20 minutes or till she looks like a prune. The float that she has carries her where she wants to go and holds her up out of the water far enouogh that her lines aren't in the water. Provided she doesn't lean farward. This is where Mom and Dad come in. Waiting to get a pic. of her 'Chill'n '. She wears one of her many hats and sunglasses - leans back and puts her hands back behind her head as if enjoying the good life. I told Gail to make the picture complete all she would need is a beer in her hand. The glare I got told me the next time I say that I aught to subsitute Pepsi for beer. Is this a guy thing or do you women have no sence of humor about beer and little kids????

My boy Dylan has crossed over his oun personal hurtle. He has always been leary about putting his head under water. FINALLY- he has taken the plunge so to speak. He is now swimming like a fish UNDER water. Ofcourse you take away his mask he may quickly revert.......... but, we'll see.

More in a few day............... Martin

P.S. Ok the last photo you'll see Miranda in the tub. Notice the glossy plastic sticking out her swim suit. We take an extra precaution and we basically wrap her up in sillaphane (sp?) before she goes in. When I first thought of this I pictured in my head those 60's\70's couches that had the plastic covers on them. Her in one of those.............. what'a pic. that would be!!!!

Wednesday, June 26, 2002 at 10:00 PM (CDT)

Greatings one and all. Tonight will be short and sweet. Got three more pic.'s for your viewing pleasure. Miranda continues to keep us all laughing with her usual charm. not to mention her lop- sided looks she'll give you. You can try to scoll her; but when she throws her head off to one side and grins................. its hard to keep from laughing at\with her.

We got pic. 1 at Universal and along with throwing broother out the window she was be-boppin' in the drivers seat like she was jammin to some tunes.

Pic. 2 what else could I add???

Pic. 3. Meeting barney made the whole trip!!!! Mickey Mouse & Co. had scared the crap out of her the day before. So Gail I thought this would send her over the edge. Give her a major complex for the rest of her life. But at Unmiversal they have Barney land or some thing ...... and we got to see the show . Before we could leave the lady running the show ask us if she was recovering from some thing. After explaining the circumstances she told us to wait and she would actually have Barney come and see her personally. Gail and I thought this was it we'll have to commit the girl after all the other charactors had scared her. Now she pronounces 'Barney' as,"Barn" I'll have you know she got all excited when he came back out and started calling him . We were beginnning to think she was going to handle this just fine. More than fine ........ she gave Barney hugs and kisses and even went to him to be held. The lady said that Barney couldn't hold little kids but she was alright with that too. This is the only pic. that we got out of the four or five we took. Camera and flash weren't communicating. However, we did get all 4-5 min.'s on tape.

Well more soon, Martin

Wednesday, June 26, 2002 at 10:00 PM (CDT)

Greatings one and all. Tonight will be short and sweet. Got three more pic.'s for your viewing pleasure. Miranda continues to keep us all laughing with her usual charm. not to mention her lop- sided looks she'll give you. You can try to scoll her; but when she throughs her head off to one side and grins................. its hard to keep from laughing at\with her.

We got pic. 1 at Universal and along with throwing broother out the window shewas be-boppin' in the drivers seat like she was jammin to some tunes.

Pic. 2 what else could I add???

Pic. 3. Meeting barney made the whole trip!!!! Mickey Mouse & Co. had scared the crap out of her the day before. So Gail I thought this would send her over the edge. Give her a major complex for the rest of her life. But at Unmiversal they have Barney land or some thing ...... and we got to see the show . Before we could leave the lady running the show ask us if she was recovering from some thing. After explaining the circumstances she told us to wait and she would actually have Barney come and see her personally. Gail and I thought this was it we'll have to commit the girl after all the other charactors had scared her. Now she pronounces 'Barney' as,"Barn" I'll have you know she got all excited when he came back out and started calling him . We were beginnning to think she was going to handle this just fine. More than fine ........ she gave Barney hugs and kisses and even went to him to be held. The lady said that Barney couldn't hold little kids but she was alright with that too. This is the only pic. that we got out of the four or five we took. Camera and flash weren't communicating. However, we did get all 4-5 min.'s on tape.

Well more soon, Martin

Thursday, June 20, 2002 at 10:37 PM (CDT)

OK Disney still stands !!! We made it to and from in one piece! I WILL NOT be able to cover the trip all in one entry. So I shall try too cover the high-light and some pic.'s to go along w\ each enrty.

Pic. #1 : Wens. morning we were picked up by a limo and wisked off to the air port. Miranda in her car seat was trying to see all she could of the limo; and was in wounder because her car seat was facing the opposite side window. This did seem to amaze her.

Pic. #2 : The first day we were there we had to ourselves . Our schedule of events didn't start till Thurs. Just outside Majic Kingdom they have a resot called The Palinisian Resort ......sp?? ........ This is where you can Have breakfast and about 7-9 Disney charactors make the rounds around the dining room and sign autographs for the kids. Look cat the pic. to see how well Miranda took to meeting Micky. And this was typical for the first day or two.

Pic #3 : Sun. we were at Sea World and I put this one in today just because she is SOooo darn cute!!!

More in a couple of days. My digital camera can hold 300+ pic.' set at the lowest setting. I'm glad to say I didn't take all 300. Just 195+\- . May be it would be easier to e-mail a zip file? Martin

Saturday, June 08, 2002 at 10:15 PM (CDT)

Ok ....... I guess I'm getting comfortable with the women being home again because I always sack off when things are going good.

HA! things are going GREAT!!!

Miranda started to walk again on her oun last fri. She reminds us of a little old women some times trying to get around, but much to her credit .... she does get up and go. To see her would put an ear to ear smile on your face. When she walks -and is on a mission- she has this thing her arm does that is hard to put in to words. Ever see these women or men out 'power- walking'?????? Some thing in along those lines. It could also be compared to a dance of sorts. She is also back to dragging around the chairs in the kitchen. She wants to help with the cooking, washing of dishes, check out whats cooking on the stove ( major no-no) and ofcourse if you're sitting at the table half asleep and you see a chair move, you can rest assured that you will see a little bald head pop up shortly afterwards to see what you're up to.

WHATCH OUT DISNEY WORLD HERE COMES MIRANDA AND DYLAN!!!

Our plans are to head to Fa. the 12th. and be back the 17th. So all you would be theives make sure you pay the bills while you're here.

We were to stay at a 'resort' for children with serious illnesses but they don't accept kids under two. So the Make a Wish Foundation is putting us up in a hotel instead. WE'll have a three day pass to D. World, a day pass to Universal and a day pass to Sea world. They have supplied us with air tickets, a car, and enough sending money to do it up right!!!! Thy even provided BOTH of the kids with suvenior money. Just the way everything is laid out for us has blown away both Gail and I. Now, I guess its up to Mom and Dad to make sure it comes off w\o a hitch.......(gulp)!!!!


Miranda's ANC is really good. All of her blood work is fine too. So good that her Dr. said that while we're in Fa that we are NOT to worry about the mask!!! Dr. Golembe, are you reading this??? are you crazy ?!!!! Well, he is worried about it being too hot there for the mask and that we can always put it on if there is a need. Its just the idea of her being in crowds and after so long of being ............ ah ...... paranoid is a good word.......... just to walk off w\o the mask is un-nerving.


As you can tell by the new pic.'s life here on the 3\4 acre spread is progressing nicely.Now as long as we come back w\ just as many kids as we left with ... Hmmmmmmmmm........... nope, better not go there.......

ok we're off for the night. Don't know if I'll be back on before we leave or not so check in any way :) Martin

Tuesday, May 28, 2002 at 10:04 PM (CDT)

Miranda seems to gaining strength each and every day. She is laughing more, smiling more and she is demanding more too.

She is in love with her knew found friend, Mr. Swing. She was signaling me for her hat and her mask and pointing to her swing which lives inside the house. We can't leave it out for obvious reasons. Ofcourse what she was wanting was right at dinner time, she wasn't too happy to have to wait either.

Dylan experience the fact that just because it is hot outside doesn't mean the water is fine to jump into. BRRRRRRRRRrrrrrrrrr.

Wk. end went off without a hitch.... not to mention no Hospitols !!!!!! The yard got done, the pool got opened ( with a few sna-phoooooos) and the bills ......... Augh !@#$%$%^&^%$# knew I for got something --- Bye Martin

Friday, May 24, 2002 at 09:02 PM (CDT)

Well, they're back home and we have made it through day two. Can't even begin to tell you how much she loves being at home. I Had to go back up to the hospitol to get schooled on a few things- dealing with her med.'s and dosages- and had a few nurses ask me," Is Cookie back already?" Smiling I said,"no" And all breathed a sigh of relief.

Miranda is smiling more and more each day. She is back to giving DaDa a peck on the cheek and smiling that mischievious smile of hers that lets you know she's up to some thing. She isn't totally mobile like she was ............ and lord when she is........ she'll be able to put action to that smile of hers and all heck will break loose.

We will be sending this wk. end here at the house ofcourse, Yard is already done.... thank you Gail and Dylan....... The pool has got to be opened, shed has got to be in order, bills paid, web site updated, trips to work for misc. crud for the house, (HMmmmmmmmmmmmmm.... what else can I whine about?????) Ofcourse I'm that part of the 'WE'. The nicest thing about the fact that is a three day wk. end is that we'll ALL be here for it......... even if I have to go to work Tues. for some rest.

Will try to put some new pic.'s of our darling some time this wk. end Ya'll have a nice wk. end ...................... Martin

Wednesday, May 22, 2002 at 09:27 PM (CDT)

On one hand .... I'm doing better on updating this than I thought. On the other ..... my spilling still tucks. And on the last hand ( yes I sprouted a third one) we have yet one more hurdle jump....... Miranda and Mom were RE-admitted to CMC this past Tues. Miranda went for a check-up on Mon. and they found her Potasium level to be too low. Home health came to the house and double checked it on Tues. and BAM !! Right back in the hospitol they went. Was to be over night .... meaning they should have been home today, but ofcourse, "One more night to play it safe". They do have to monitor her heart rate and blood levels as they administor the potasium........ so we will patiently await their arrival at home tomarrow. Granted, I will want blood if thier not ......... but what else is new?

Dylan's last day of school will be tomarrow and when he comes home he will be, in fact, a fourth grader. Way to go brudder "D"....... When Miranda calls him she usually comes out in one sylable ... D ...

This coming wk. end will be a three day-er for Dad ..... well ok maybe a one day-er the other two I have got to get the pool cleaned out and up and running. And then get the yard cleaned up. And see if I can't get the shed put in some type of order.... and then...... ( maybe I should go ahead and take the week off??????)

This ofcourse is based on the fact that the girls are home and STAY home !!!!! if not ...... .all bets are off and we're camping at the hospitol. We'll chain Dr. Golembe to the hosp. bed too. Maybe we'll get to meet his family..... provided they come and see him..... :) Matin

Friday, May 17, 2002 at 09:43 PM (CDT)

The Shively household once again holds women too. Ms. miranda and MaMa returned Wensday. I felt like I was Moving from Duke again. Had to barrow a wagon to move all the "stuff".

As of today Miranda DOES NOT HAVE any cancer cells in her blood, bone marrow or her spinal fluid. aaaaaa AAAAUuuUUGH!!!! ( sorry ... Marine sorta thing) Ofcourse by the pic.'s you can see she still doesn't have any hair ( now where did I put that wig???!!!)

We have spent the last couple of days just enjoying the fact we're not in the hosp. any more. Miranda doesn't have anywhere near the spunk she use too. to get her to walk from the couch to the chair is a chore for her and there better be some thing worth while waiting for her there.
The changes in her I have already seen is that she is smiling alot more. she has gotten back to smacking my bald spot and she is also back to kicking Dylan..... my lil' girl is comin' around!!!!

We are also looking forward to the end of June. Make A wish Foundation is wanting to send us to Disney. Land\world ???? the one in Florida. All goes well we should be there for for the fourth of July.

Thank you for stopping by .... please sign the guess book as you exit and please watch your step Martin

Monday, May 13, 2002 at 09:18 PM (CDT)

Miranda can't be any more ready to come home than us !!!!! She and MaMa are still entrapped high above Charlotte. They work thier dongeons different here, they put them on the seventh floor and call it a childrens hospitol. Though the warden is pretty nice and the jailers are most very cooperative............. a jail is still a jail.

We still patiently wait .... what else is there to do ? ..... for her ear to clear and for her white cells to grow stronger.

Yes David I do have the ' Grow cells grow' drawing hanging on the wall and it still doesn't seem to help.

Miranda under went yet another bone marow check AND another spinal tap. Oncee the word is in I'll pass it along.

Dylan happen to pass his third grade end of year testing............. PHEeeeeeeeeeeew!!!! With all that has happened in the last year ........... Yes we were worried. He is a bright kid..... if he could only apply more of it towards school.

Got to go back and put a car seat back together. Shipped iced tea in it to the hospital for gail on MaMa day. Needless to say it leaked and with Miranda coming home soon ( Crossing every part of my body possible) she needs a clean seat to sit in.

Uncle Tim came in from Ok for the wk.end. He in fact made Gail her mothers day meal. Me? I just screwed around with the washer and got it back to a running state. He actually made a chicken parensain (SP?) that was actually eatable. Way to go Bro ...

Got to get that car seat and get to bed .......... keep on with this and I'll have to type an epilog........... Martin

Tuesday, May 07, 2002 at 10:01 PM (CDT)

............................ NO LUEKEMIA IN THE BONE MARROW !!!!!!!!.............


Miranda isn't feeling much better but she was fever free for for most of the day. Her white count is still low. By this wk. end she should be ready to come home. We'll see if this steroid will help in producing wht. cells. Sorry for such a short note tonight .............. not much else to pass on.

Better copy the "rainbow" pic. there are too few that excists and Miranda starts to whine now if you walk towards her with it. Martin

Monday, May 06, 2002 at 08:43 PM (CDT)

...................... Miranda is now 2.............. She was a whole two years old this past Saturday. Go to the pic.'s as soon as you get tired of my ramblings .............. just lost half of you didn't I????? There's a few pic.'s of her at her Birthday party.
Had always told Gail that one of the things That I hated about all of this relaps is that all her hair has fallen out again. Some one needs to explain to me why it is that ninty-five % falls out and what is left is this ridge around her forehead. I also explained to Gail that If I could find the right "WIG" that I was thinking of .... My girl would have hair for her birthday. Again check out the pic.'s Now, for some reason I am quit partial to ole fuzzy top so that one stays..............

One of the reasons I haven't been on lately is because there is two (cough cough) older type people that have invaded us from Mo. This would be my Dad and Babs. With Gail and Miranda in the hospital they're in the bed room where the computer is and I'm kicked out by 9 or 10......... which is when I usually uppdate...... ut oh ...... he's reading this over my shoulder ...... Hey !!! put that bottle of Geritol down

Miranda is still in CMC until the end of the week. She is due for a bone marrow check tomarrow. This will tell if there is any existing Luekemia in her marrow. Her spinal fluid is still clear and her white counts is still neg. of blasts. Her white count though is still very low. They have started her with shot of a steroid to artificially enhance her white count till she can make her oun.

Will have more to tell in the next few nights I hope................ enjoy the pic.'s.................... Martin

Wednesday, May 01, 2002 at 09:44 PM (CDT)

Miranda is starting to feel a smidge better. We get a few smiles from her, but it is nothing compared to what we use to get. The chemo has taken its toll. She is not really wanting to walk her self. However, get her mask and she is more than ready for you to take her for a walk..... as long as you're the doing the walking..... and she is the one being carried. Between the Luekemia and the chemo it takes alot out of them and in fact make thier bones hurt.

Usually when I get to the hosp. around 6 am. she doesn't want anything to do with me, nurses, ..... well you get the picture. Today however she couldn't get enough hugs or get too close to Dad. This was a good feeling.


Will update her pic.' in the next couple of days. Remember though..... the chemo has taken it's toll... her hair is all but gone andshe is looking rather pale.

Dad and Babs will be here Fri.and we are looking forward to that. Would you believe they're flying? All the times they have been here they have driven. Just hope thier luggage gets lost and not them !!!!

Got go and get things ready for tomarrow .... hope there is something positive to pass on soon. Miranda still fights an ear infection and a low white count. With a low white count she won't be getting out any time soon.

Martin

Saturday, April 27, 2002 at 09:14 PM (CDT)

Last time I said we were hoping for +\- Tues for her to come home. It turned out to be Thurs. and we just re-admitted her this morning. So we got a day and ahalf this time. Still with the ear infection and still has fevers. About 1:30 this morning she awoke with a fever and threw-up pretty bad. Her appitite through all this has been pretty good. We would even cut her off at times just so she wouldn't cause herself stomache problems. Needless to say she still had a tummy full when she blew.

Dylan has gotten to stay w\ them again tonight...... lucky punk.

We'll be looking forward to bringing her home as we always do, we just don't have a clue this time. More later............ Martin

Saturday, April 20, 2002 at 10:26 PM (CDT)

Guess I shouldn't complain........... got the house all to myself ((( HEL-l-l-l-LOoooo))) Dylan has spent last night and tonight up at the hosp. Now if I stay up there who stays w\ Dylan? With him up there ...... there's no room for me...... another dbl edge sword.

Miranda has got a severe ear infection. They say it is simular to swimmers ear. It lays behind, in front of annd surrounds the left ear drum. The Dr. change the med to a more aggressive drug. Between this and the fevers............. who knowswhen she'll come home. However we are optimistic for tues +\-.

Not much else to pass along tonight Will get up and out the door so I can be at the hosp. when they get up.

Appreciate all the prayers...... Martin

Tuesday, April 16, 2002 at 09:43 PM (CDT)

thank you to all who keep coming to see how my little girl is. Also, to my family to which with out them Mom couldn't have made it out here to see Miranda.

They did a spinal tap a few days ago to see if the cancer had spread there and it had. They ofcourse have treated for it. Tomarrow I get up and head to the airport with Mom and then back to the hosp. She is to get another spinal tap. Gail wanted me to make sure that I get there with her clothes so she'd have something to ......... hee hee ........... think I should????

Miranda doesn'tlike being confined. Everytime I leave she wants her mask so she can go too. It tears me up to see her take her puggy hand and tap her mouth for her mask and saids, " bye-bye". This particular battle of the war she is SOOOoooo much more aware of what is going on. When htis first started over a year ago it was like she didn't know she wasn't suppose to feel this way. And now she knows she isn't and she is misserable.

Gail is holding up fine .......... well, define fine........... She too is more than ready to come home. My personal hell is having to leave them. Hers is having to stay. Now, she wouldn't have it any otherway.......... but it has got to be as close to prison as it can get.

More when we have it to pass along. Martin

Sunday, April 14, 2002 at 09:39 PM (CDT)

We got to have Miranda home for about a whole 24 hours. She was discarged and home by 12:00 noon yesterday ..sat.. and she was in another room by 9 or 10 this morning. Her fever was around 101* So ofcourse not only did they want to see her they had to keep her. Where as ofcourse it is the best thing to do for her......... I want her home.

This time we're not down the hall, but, right across from Jacob Courtny. He's in too because he has relasped as well. So when you think of us in your prayers ....tack his family on too please. don't really know if a blanket prayer will work........ but all the kids up on the 7th floor could use all the help they can get.

Mom is in from Il. Really great having her here. So far the "BEST" thing about having her here is the molasses cookies. MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMmmmmmmmmmmmmmmmmm ..... molasses coooooooooooookies.


On top all that has happen to Miranda in the last 16 months she goes back in today and I am feeling a little defeated. She was to go to a local church we have alined ourselves with to be annointed. ANNOINTED........... not annoid. thats Dad's job. To annoy any and all present. :) after all what the world needs now is more noids. We will get her there. some reason it wasn't ment to be today.

Love reading all your entries so keep'em comin............... Martin

Thursday, April 11, 2002 at 09:48 PM (CDT)

Miranda is sore from the hickman being put in. She has also started her chemo today. They are accompanied by steroids ofcourse and all that put together leaves her irratable. She looks up at you with little-to-no-emotion and the look saids," Yes? you want something? get outta my face"

If you "mess" with her long enough you will end up ticking her completely off; or, you'll see the corners of her mouth crack ever-so-slightly upwards. With the latter you are atleast going to get a few hugs, maybe a swat upside the head (she gets that from her mother!!!)But you're garuenteed a few pecks on the cheek too.

Got to get to bed. Please keep Miranda in your prayers, which I know you will, and just take the time to add some one else you know too. can never have too many.

Martin

Wednesday, April 10, 2002 at 08:47 PM (CDT)

Today I dropped off Gail and Miranda at the hosp. She received her line and all went well with that. the only problem was Dad wasn't informed of the room change and nearly wigged out.

She starts off her chemo tomarrow too. It will be a 4-6 course. After that....... we'll see.

Gma jean (my mom) will be landing here fri. It will bean exiting time for all. Miranda hasn't ever met her. it will be interesting to see how she takes to her. Mom lives in Il. and neither one of us here lately has had the money to get her out her before this. Other parties are making it possible. (TY)

if you want to get caught up click on history ( upper left hand corner) and read the last few entries.

Sorry no pearls of wisdom tonight. Just please keep Miranda in your prayers. Say an extra one Dylan her brother...... he's nine and having a difficult time with this too.

Martin

Tuesday, April 09, 2002 at 11:39 AM (CDT)

To all who have come here.... thank you. Thank you for your consern and your prayers.

We got back last night around 8:30. It was a very long day and there looks to be many more ahead of us.

As you may tell by my tone ...... it wasn't a good day full of good news. Miranda's cancer is back. Our options are limited and her outcome isn't promising.

Don't think for a minute because I don't paint a pretty picture that I have given up on my little girl. Infact, I have contacted St. Judes to see if they would do a second opinion. This request has got to come from her Dr. We will be talking to him yet today and will put him in touch w\ them today.

Got to for now..... may have to take Miranda to hospitol. She got a fever of 102. Will add more later tonight Martin


It's 11:08 and got to be up early to get miranda to the hosp. She goes in at 7am for labs and to have a hickman put in at 1:30. Poor mom..... she gets to listen to Barny tapes all day. Then again she gets to spend all day w\ Miranda too. They'll spend the night and come home thurs barring any problems.

Will up-date thurs for sure but thank you for all the support. Martin

Saturday, April 06, 2002 at 07:38 PM (CST)

Yes we're still around. It has been a while and I'm sorry I haven't kept this up better. Everything piles up on you and things get pushed to one side. THIS shouldn't have been one of those.

The reason we're back is not a good one though. Miranda has fallen out of remission. So it looks like at this point. Nothing is ever clear in this world and this is no different.

This past Monday Gail took Miranda to the hospitol here in Charlotte for a regular check-up. This includes blood work and a physical of sorts. Her labs came back with pretty normal counts except for her white counts...... they were at 40,000. ( 8-12,000 is normal ) This pretty much put us into a tail spin. Miranda, to this point, could have been a poster-child for what a BMT could do for a child.

This past Wendsay we took her back in for another test and it showed 30,000. Why is it going down???? not complaining ---- just stumped. Apparently so are the Dr.'s.

We are heading to Duke this Monday. They have already pulled labs and sent them to Duke for a MLA test we won't hear on those till next Fri. Mon. is for blood work and so they can poke and prod. The MLA test will tell all we hope. It should tell if there is problem .... if there one... and exactly what we're dealing with.

IF.... IF ... IF ... it is in fact her ALL has returned... her chances are not good at all. If she has relapsed, then getting her in to remission has a 5% chance. If she goes into remission she has a 10% for another BMT. Neither Dr. Martin or us are willing to use radiation on her. Therer is too much damage that can occure on one so young. Not only organ damage but brain damage. So she survives everything and comes home mentally handicaped from radiation. Radiation is not an option.

Gail and I would appreciate it if all that reads this could put her on your prayer list. We know alot have already got her there and would appreciate it if you will redouble the effort. I believe it helped last time and we want God to know that none of us here are ready to give up on our little girl.

I will start to update this once or twice a week atleast. look for a follow up poss. mon or tues. on how the trip to Duke turned out. from there ........ well we'll see :)

thank you for coming and please sign the register as you leave....... Elvis has left cyberspace


Martin

Saturday, April 06, 2002 at 07:38 PM (CST)

Yes we're still around. It has been a while and I'm sorry I haven't kept this up better. Everything piles up on you and things get pushed to one side. THIS shouldn't have been one of those.

The reason we're back is not a good one though. Miranda has fallen out of remission. So it looks like at this point. Nothing is ever clear in this world and this is no different.

This past Monday Gail took Miranda to the hospitol here in Charlotte for a regular check-up. This includes blood work and a physical of sorts. Her labs came back with pretty normal counts except for her white counts...... they were at 40,000. ( 8-12,000 is normal ) This pretty much put us into a tail spin. Miranda, to this point, could have been a poster-child for what a BMT could do for a child.

This past Wendsay we took her back in for another test and it showed 30,000. Why is it going down???? not complaining ---- just stumped. Apparently so are the Dr.'s.

We are heading to Duke this Monday. They have already pulled labs and sent them to Duke for a MLA test we won't hear on those till next Fri. Mon. is for blood work and so they can poke and prod. The MLA test will tell all we hope. It should tell if there is problem .... if there one... and exactly what we're dealing with.

IF.... IF ... IF ... it is in fact her ALL has returned... her chances are not good at all. If she has relapsed, then getting her in to remission has a 5% chance. If she goes into remission she has a 10% for another BMT. Neither Dr. Martin or us are willing to use radiation on her. Therer is too much damage that can occure on one so young. Not only organ damage but brain damage. So she survives everything and comes home mentally handicaped from radiation. Radiation is not an option.

Gail and I would appreciate it if all that reads this could put her on your prayer list. We know alot have already got her there and would appreciate it if you will redouble the effort. I believe it helped last time and we want God to know that none of us here are ready to give up on our little girl.

I will start to update this once or twice a week atleast. look for a follow up poss. mon or tues. on how the trip to Duke turned out. from there ........ well we'll see :)

thank you for coming and please sign the register as you leave....... Elvis has left cyber space

Saturday, April 06, 2002 at 07:38 PM (CST)

Yes we're still around. It has been a while and I'm sorry I haven't kept this up better. Everything piles up on you and things get pushed to one side. THIS shouldn't have been one of those.

The reason we're back is not a good one though. Miranda has fallen out of remission. So it looks like at this point. Nothing is ever clear in this world and this is no different.

This past Monday Gail took Miranda to the hospitol here in Charlotte for a regular check-up. This includes blood work and a physical of sorts. Her labs came back with pretty normal counts except for her white counts...... they were at 40,000. ( 8-12,000 is normal ) This pretty much put us into a tail spin. Miranda to this point could have been a poster-child for what a BMT could do for a child.

This past Wendsay we took her back in for another test and it showed 30,000. Why is it going down???? not complaining ---- just stumped. Apparently so are the Dr.'s.

We are heading to Duke this Monday. They have already pulled labs and sent them to Duke for a MLA test we won't hear on those till next Fri. Mon. is for blood work and so they can poke and prod. The MLA test will tell all we hope. It should tell if there is problem .... if there one... and exactly what we're dealing with.

IF.... IF ... IF ... it is in fact her ALL has returned... her chances are not good at all. If she has relapsed, then getting her in to remission has a 5% chance. If she goes into remission she has a 10% for another BMT. Neither Dr. Martin or us are willing to use radiation on her. Therer is too much damage that can occure on one so young. Not only organ damage but brain damage. So she survives everything and comes home mentally handicaped from radiation. Radiation is not an option.

Gail and I would appreciate it if all that reads this could put her on your prayer list. We know alot have already got her there and would appreciate it if you will redouble the effort. I believe it helped last time and we want God to know that none of us here are ready to give up on our little girl.

I will start to update this once or twice a week atleast. look for a follow up poss. mon or tues. on how the trip to Duke turned out. from there ........ well we'll see :)

thank you for coming and please sign the register as you leave....... Elvis has left cyber space

Tuesday, October 30, 2001 at 10:14 PM (CST)

This past Thurs. I went to an encounter group for parents of children with cancer. Seeing how the last time I went to an encounter group didn't go to good, I was kinda questionable. It eas for procrastinators ......... no one ever showed up.

Gail will show up one day.......... just don't expect it before the first of the year. She still gets giddy just getting out of the house.

Even though Miranda is doing great she will not be going out as a green M&M or any other color. Her and Dad will be hiding out in the back of the house. Dylan will be a Vampire and will bring home 5 lbs of candy to have it set up in the cabinet through Easter. Ofcourse Mom and dad have to "inspect" all candy. From the inside out is preferred.


Wish I could think of some thing else to type............... there is my thirty stitches I could gross you out with......... will save that for another night. Nite Martin

Wednesday, October 24, 2001 at 08:58 PM (CDT)

.................. excerpts from Miranda's Diary..............


Dear Diahrea,

I think Momma has lost it. Sence we've been back she has been laughing way too much at me. The more mobile I get the more it seems to tickle her. Ofcourse when Dah Dah gets home its his turn. I do love the all the huggeses and kisseses I get that follow the laughter. But stilllll.....

I'm not sure what Brudder(brother) did to get into trouble but it must of been a whopper. They have kept him in his room for the last 3 days. they're so mad at him they must not want to see his face. Every time he comes out of the bed room they make him wear a mask. And if the boy starts to cough around me........................ I hope I never make them that mad!!!

Cho Cho ( CoCo) still doesn't know what to think of me. Everytime I come near he heads off in the other direction. We have far more things in common than he realizes. We both have poop-pads. Mine is just attached to my butt and his is in the kitchen. We both take naps. And we both love our chew toys. Every once in a while I'll swap with him just to freak out Momma.

Momma saids that I see angels when I sleep. I'm not sure what they are but I do see these two people. They seem to understand me just fine. thy told me to call them Grandma and Grampa.

Gonna go they they just walked in and I am .............zzzzzzzzzzzzzzzzzzzzzz


Personally I was amazed to have found this and so well typed too.(cough cough)

Miranda is doing Unbelievable!!!!!! We had a check-up to day. This is her four- month check-up. She is actually 124 days post transplant. Her ANC is at 6000. This is GREAT NEWS !!!!!!! Dr. Martin ( yes I do like that name) said that all the test came back indicating that she is where she is suppose to be .........................
ONE YEAR POST TRANSPLANT !!!!!!!!!!!!!!


Now who in their right mind would argue that??????

Enjoy the new pic.'s . going to go kiss both my kids again.......... Night, Martin

OK Got a problem ........ tryed to up-load pic.'s and site won't let me........ will get it don tomarrow site-willing.

Wednesday, October 03, 2001 at 10:38 PM (CDT)

................... YES WE'RE still kick'in........................ ofcourse most of the kicking is by Gail and I have have to admit(sniff) I deserve most of it.!!!!

Miranda is still our little heart-throb around here. She always has a smile waiting for me when IO get home from work. She knows that if she gets a kiss that it has to be on the forehead............. so she gives me a big hug and sticks her head out to be kiss. (psssst........ I still sneek one in on the cheeck.............. don't tell no one)


I'll make it short tonight ....... did bills and other asorted fun things tonight and am tired. Thanks for stopping by and I'll get a few more pic's on tomarrow. Martin

Monday, September 17, 2001 at 09:17 PM (CDT)

YES THE SHIVELY WOMEN HAVE RETURNED !!!!!! ....................... and then left again (sigh ....just can't win !!!) And YES !!!! THE HOUSE WAS CLEAN TOO !!!!! not to Gails specifications but they did surpass mine!!! LOL

Dylan and I ...as usual left Fri. afternoon for Duke. He wasn't aware of their returning..... after all if they didn't get to come back it would be another disapointment. Sat. the bags were packed loaded and we all shuffled off to Matthews...... Nc ofcourse. got back around 1:30 pm. and proceeded to unpack, rearrange, shift furniture, pack other things and.............. well you get the idea.

Hopefully you all will get the idea how happy Miranda was to be back home from the pic.'s. Take one of Mranda's smiles and increase it two-foldand you will have Gail's smile !!

They spent Sat. and Sun. with us and had to go back to Duke for some last bit of testing. All goes well they'll be back tomarrow night. If not then Wens. Then they'll be home for good !!!!!

I hope you all enjoy the pic.'s good night

Monday, September 10, 2001 at 09:23 PM (CDT)

..................... DIAL 911.............. DIAL 911................. CALL THE FIRE DEPARTMENT.......... CALL THE POLICE.................. BUT MOST IMPORTANTLY CALL STANLEY STEAMER AND MOLLY MAIDS !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Those fool doctors are trying to give me a heart attack !!! Miranda ( and Gail- they come as a package you know) are due to come home on the 29th . Got off the phone tnight with Gail and they are sending them home THIS WEEKEND !!!!!!! HELP !!!! HELP !!!! HELP!!!! How am I suppose to get the whole house sanitized AND keep it that way till SUN????? I have a problem with keeping it clean just over night...... and we sleep most of it.

( deep cleansing breath......... ) HELP HELP HELP !!!!!!!!!!

OK I can handle this....... Miranda is doing GREAT!!!! They are sending her home TWO weeks early and that should say alot in its self. Then she'll have to go to Duke once a week for a Med and whatever else.... Day 100 she be home for good and will only have to go to Duke periodicaly.

If you have been a faithful readeryou will know that I had some trouble with my truck a couple of months ago. Living inside city limits I couldn't take out back in a field and pour gas on it and torch it............. HMmmmmmmmmm.......... After alot of searching I have found a new vehicle to go and pick them up in. It is a used 1999 Explorer XLS. HEY if my credit wasn't rolling down hill faster than my old truck I would have gotten a new one !!!!!!! Sorry the last thing in here you want to hear about is that!!!!! They're my finances and I don't want to hear about them !!! LOL
It is a nice truck and will be a great way for all of us to get around comfortably. And I won't have to unfold each time I get in or out.... unlike Gail's civic.

ok now they're coming home and we got a nice SUV to bring them home in.......... HOME !!!???? HOW am I going to get this house cleaned before they get home. Why am I typing ???? I need to be CLEANING......... no pic.'s of me will ever show up here with me and a mop, dustrag or espicially a toilet bowel brush in hand!!!

Rattle cages and spead the word to one and all........... MY GIRLS ARE COMING HOME!!!! Give everyone this web address and ask them to sign in one last time. We won't be giving up the site for a while. Would like to keep everyone up to date for awhile after she's back. ( will be fun to watch Gail reajust to civilization too Hee Hee)

Some where between the dust and scrubbing I'll try to get a few more pic.'s on to look at.......

To the folks at CMC Childrens Specialty Center............. Miranda's on her way back !!!!!! and her smile has only gotten bigger !!!!

Wednesday, September 05, 2001 at 10:09 PM (CDT)

Miranda continues to do well. She also continues to amaze Gail and myself by inventing differant ways a now 16 month old can rearrange a room. The hotel room will be their home till the end of the month. Gail has covered the floor with blankets from home so she can get down and roam. Ofcourse this doesn't hender our little girl at all. There is a chair............ we scoot it over here. I want to get to the air conditioner......... We weasle our way around the table that is blocked off by a chair and squirm past the couch..... and WHA-LA.......... Mom is there to jerk me back into fair territory. ( FOILED AGAIN ! )
Ask Brother about certain antics with the TV. First we're on ....... Miranda wobbles by....... pointer extended ....... and then we're off.......... ( we hear 16 month old laughter)...... remote -on ..... Miranda saids off. Brother yells........ he hates missing Willy Wanka.

side bar ........ we watch that movie three times this week end and I catch my self sing a Oopa-Loopa song at work...... go figure

Miranda is off again this time she takes on the chair that is placed in front med supplies............ Dad holds out a "Smarties" to Miranda. Miranda forgets the chair and comes waddling to Dad. Hmmmmm ................. Didn't fight her one bit ............ but I did have to share. Can't have everything.


Gail said she wanted the camera so she can take pic.'s of her in those "AAAUUuuugh"-moments. Still got a few new ones to share though. Hope you like. Also left cam-corder so we can make a short mini-movie of our visit to Duke. We'll let you know price and availability. :)

More tomarrow. Martin

Wednesday, August 29, 2001 at 08:58 PM (CDT)

HELLO EVERY ONE ...... WE'RE STILL KICK'IN!!!

Miranda is doing well. Gail was conserned about a few issues and the Dr.'s are addressing them. It involves blood in the stool so I won't go any further than that.

Dylan is my main consern right now. He has been having sinus problems and now he has complained about an upset stomach....... he doesn't know it, but his tail is going to the Dr.'s tomarrow !!!!! Going to Durham this wk. end and he'll have a mask glued to his face if need be !!!! Ofcourse that won't happen, but then again..............???? Last week end I ended up leaving him w\ Dawn my neice ( T Y Dawn ). Left about eight am and spent three hours in the car. spent about six hours there and another three hours back. I'M NOT UP FOR THAT AGAIN !!!!! Would like to spend the night and take some time with the girls and all

Just because she is out of the hospital doesn't mean she's out of the woods. We still need all the prayers you all can round-up. The following year she is out we will still have to isolate her because her immune will not be up to ours. The FDA won't declare her "CURED" for fiveyears out from the transplant. Personally I consider her "cured" now. Premature I know but it is going to work or it isn't. And so far it is. Why buck a good thing????

Will try to master the photo software between loads of laundry, vacumming, and burning an occassional dinner. Need to resize photos and haven't dedicated enough time to try it. more later, Martin

Thursday, August 23, 2001 at 10:35 PM (CDT)

............still holding "GREAT " ....................

Gail has crossed over to a whole new threshhold............ What to do with a VERY active 15 month old in a realatively small hotel room. By other rooms its fair size , but when you have to attemp to live it around the clock......... it closes in on you.

Her WBC isn't dicussed much these days. Unless they sky-rocket or drop terribly I don't hear about them. Her steroids are continuing to decrease. some how for some reason I think I'll miss those big round cheeks.

Got bumped the other night from Caring Bridge and lost entry............. Man I was thinking some viel things !!!!! you know what I mean even if I didn't spell it right. After almost a week of not being able to get on I was ready to type !!!!!

Gpa and Gma Babs were in the neighborhood so they stopped by( meaning they were only a few hours away) It was good seeing them. now if they only LIVED a few hours away.


More tomarrow its late and I tire easier these days........... Don't know if it's the heat I work in or the weight I've put on through all of this........ oh yeah it could be Dylan running me ragged too. Night

Tuesday, August 21, 2001 at 11:05 PM (CDT)

........... Miranda is doing GREAT!!!!.......


Spent the last 45 min.'s typing in a new entry and lost it!!!!

Tired and going to bed !!! enjoy the new pic.'s Martin

Monday, August 13, 2001 at 10:39 PM (CDT)

..................... 7200 WBC..............


Now that's more like it !!! It shot up to over 20,000. over the wk. end and got us kinda nervous. there is a drug Miranda takes that is GSFS........ well, some thing along those lines.......... it stimulates white blood cell growth and boy did it. She had been on it as a daily med. They have sence backed it off to three times a week.

Dylan went to school boasting to all his classmates that even though Dad had threaten he wouldn't.......... he IN FACT DID TURN 9!!!!!!

Miranda remains well and going strong.... Gail's words were I believe," head strong" She has tomarrow off from clinic and nowhere to go. Anyone in the area ???? bring them here and I will return them .


Just thought I'd write a few lines. and keep things half-way updated.

More tomarrow

Saturday, August 11, 2001 at 02:04 PM (CDT)

MIRANDA IS DOING GREAT !!!!!!!
those are the official words of one Dr. Paul Martin.


She has been in the hotel room now for a little more than a week and is loving life. Most Days for involve Gail drawing blood for lab work and strolling over and dropping them off. Back to the hotel to wait to see if lil' miss wounderful needs anything that day. If she does they're off to the hospitol. The days can be and often are long and boring for Gail. So I try to call her atleast twice a day.

Dylan and I got here last night about 6:30 and he has been a handful ever sence! Maybe because it is birthday this Sunday... than again it could be because he's just Dylan.

Sorry about the lack of new pic.'s will try to get some on Mon or Tues. Will scan some we got back from drug store today and use them.

The doctors are backing off alot of the drugs she is on. They have changed one from IV to mouth. There is one that is AGSF that helps produce white cells. It's doing so well that her count now is over 20,000 !!!!! This is a little over the high side so I thought but I was reassured by Dr. Martin it was ok because of it being all donor cells. ( Martin lets out a deep sigh of relief----- me not the Dr.) They have backed off this drug too from acouple times a day to once a day to now three times a wk. She is still mystifing my on how well she is coming back from all this.

Look forward to getting all of them home!!!!!!!!!!!!!

Got to get back to the hotel before Gail thinks I ran off with some one from the physic ward.

More tomarrow.......... Martin

Monday, August 06, 2001 at 11:40 PM (CDT)

Hello to all,

Miranda remains at the top of the BMT Honor Roll. Her WBC is 15.6 and this is a really good thing for her. She is still getting a med to help produce white cells but they are sloooooooooooooooooooowly weaning her off of it.

She is also completely off of TPN.... the liquid food ...... and they are talking about reducing a few other things too. Even changing a couple others to oral instead of IV.

Dad is pleased as punch that she is doing so well. Mom .....???? well, I've often woundered about her anyway. After all look who she married !!! Mom is hanging in there. and she is abit bored in the hotel with just the two of them. This Sunday is Dylan's BD so that aught to really spice thing up for her.

Wish I had something to better entertain Ya'll with but I'm tired and want to go to bed.

Any USB wizards out there? Martin

Sunday, August 05, 2001 at 03:28 PM (CDT)

................... 100 % DONOR.............
................... 100 % DONOR.............

I believe that saids it all !!! ok ok ok I shall pontificate further............

The Hospitol did a rather intensive test on Miranda's blood last week. It measures the No. of T- cells as well as whose cells are being made. The first two lines above should answer any questions from there. Sence Miranda's blood allowed the Cancer cells to grow, any of hers cells still floating around in there would be a bad thing.

Miranda moved to out-patient on Wens. and she has been loving life ever sence. She puts her little mask on willingly because she knows that she is going somewhere. She doesn't pitch a fit till we end up at the hospitol cause she knows she won't have the freedom she's use to. In the room she is allowed to use her walker and just goes goes and goes........ it makes me tired watching her. She isn't allowed down on the carpets at all though. Too many things lurking in there.

She should be totally off the TPN as of Mon. She eats close to what Dylan eats now even with the TPN. She doesn't quit drink enough......but we're working on that. When she does come off this should increase ofcourse.

Dylan's Birthday is this coming Sunday and he is really looking forward to spending it with Mom and sister. YEP...... Dad's just the chauffer.

Thinking of what else to add and can't so I'll get off and save you all some boring dribble....... night

Martin

Thursday, August 02, 2001 at 09:24 PM (CDT)

.................. 9400..................

.................. 9400 .................


We have alot of good news tonight. Her WBC is only the tip of the ice berg...... ooooohhhhh watch out for that cruise liner !!!!!..............

OK I'm tired and I guess I'm getting kinda stupid.

She is INFACT out of the hospital as an in-patient. Which by default makes her an "out-patient". We moved her....... WE???......... heck with that! I moved her !!! Atleast all of her stuff that built-up over the last 40+ days. Hosp. is to busy during the day to pull up front and go get a load and take it off to the hotel. I resorted to using a kids wagon to tote everything to the hotel. Me and lil' red made four trips back and forth. People were looking at me woundering where my kid was and if she was burried some where underneith.

To Tim and BJ.......... Had I known what I was in for yesterday I would of called you !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The last trip out was quit special. Miranda was tucked into the wagon all snug and fit to be tied............. SHE WAS EXCITED !!!!! She knew some thing was going on that was special. All the nurses and all the kids on the floor that could come out were in the hall waiting for her. Everyone clapped and cheered and threw cafettie ( those little bits of paper stuff) sp??????
The last load was Mom's turn to pull the cargo.......... I captured it all on tape.

The other good news was that we got a prelimenairy report that Told us that SO FAR all the T cells that Miranda's making are from the donors !!!!!!!!!!!

More good news????? well from Gail's perspective ..... Miranda is being backed from some med.'s that Gail has to give her through I.V. For her thats good!!!


Sometimes Gail really gets to me...... She gets all nervous over the smallest things. All she has to do is ... flush Miranda's central lines, give med.'s through an I.V., hook up her TPN ( liquid food ),Draw blood every morning for labs. Manuever Miranda and sometimes three pumps out the door to head to the clinic.

I hope I came off sarcastic..... because she really does do an amazing job. As paranoid as she gets over doing it right..... she aces everything the nurses and the home health people have shown her to do. With all the real @#$%$#@c that is going on in the world with men and women killing thier kids. We're fighting like hell to save ours and she is giving it a hell of a right cross!!!! She may never read this or any of the other journal entries....... but I don't mind tell you, I'm am really proud of her !!!! Would I, and ,could I, do what she does? Absolutely! But I thank God I have her because she brings so much more to it than I ever could.


Don't make a journal entry for a couple days and look what happens...... I write a book. Sorry. Martin

Tuesday, July 31, 2001 at 09:18 PM (CDT)

......... 5400.............

......... 5400.............

We are so proud of our little girl. She is doing so good. She is also SOOOOoooo full of her self. All the backing off of the steroids and and the misc. drugs is giving us our little good natured girl back!!!!!!

.............. yes she really is mine!!!!....

We have to wait to get clear from here in the morning. I take them back to the hotel for the next fifty to sixty day stay. but they'll be out of here.

More when I got more to tell

Monday, July 30, 2001 at 10:49 PM (CDT)

..................3400..................


Taking off like the shooting Star she is. Everyone at the hospitol has been really great !!!! It will be hard to go................... YEAH RIGHT!!!!! Gail and I couldn't have asked for a better group of people and we'll miss them. The memories of the time there will last forever. And if that doesn't work I'll whip out the cam corder and remind us.

Miranda will be right about day-39 when she is moved to out-patient care. So they'll be stuck in a motel for another 2 months.

Going to sign off now because I got to get some sleep. the trip isn't LOOOOOoooooong or anything except I already did it yesterday will do it again tomarrow return on wens and go back on Fri. HUMPH.... if only I could get a dime for each mile BEFORE I drove it!!!!!

Martin

Sunday, July 29, 2001 at 09:31 PM (CDT)

............... 2400 .................

............... 2400 .................

These are Miranda's wbc.'s for Sat. and and today. She's really starting to take off. In fact it kind of conserned Gail and me when they said her counts could double in a days time. After all folks.... when her wbc shot through the roof last time........ it was when she was diagnosised w\ ALL. Dr. Martin smiled and said it was normal though.


I truely wish in times like these I was a computer nerd instead of a woodworking nerd. That way I could zap you all a clip of some tape I took of her on the cam corder. She is getting around on the floor with her walker and tries to run at times. She still wears a mask ofcourse: even though, you can see how much fun she is having through her eyes !!!!


If all goes well, and there is no reason it shouldn't, she will be moved to out-patient Wens. This will mean they are to live in hotel for the remaining 60 days. The hotel is a block away from the hospitol and she will visit every day. Not much of a "life" but when they get back home we will really make it special for both of them.

More tomarrow, Martin

Saturday, July 28, 2001 at 12:06 PM (CDT)

........ FRI -----> 1200 wbc <------ ...


........SAT ------> 2400 wbc <------ ... Keep on Growing !!!!!!


We're on our way in a little bit for a 'pass to no where' Alot of people up here have rented apartments to stay in. Or have made arrangements through churches to stay some where. Seeing how we have no such luck we're going to take her walking in the garden and for a drive. We're kinda questionable about the hotel because there is no filter. She'll be able to feel the actual sun on her face and the wind over her bald scalp :) Either will be a great change for both of the girls. You won't believe the change in her in just a wk. If I could debug that @#$#$%$%^%^&^&* camera you'd be able to see for yourself.


Now for the rest of the story.........

Her mother and I are going to 'break her out'. We're both tired of all this and we're going to blow this popcycle stand !!!! Don't tell anyone but we are thinking around WENS !!!!!!! Ofcourse we get all this planned out and Dr. Martin comes in today and tells us he's moving her to out patient and screws all our plans up. Guess what day he's thinking of too.

I'll come down the night before and help in the move. she'll be in a hotel room then. So somewhere down the line I have to find a filter for the room. Dylan and I will continue to come down each wk. end until they release to go home. Today is day-36 and they may let her go at day-90 at the earliest. But usually it is around day-100 from transplant. So we still have around another 2 months left to go. Keep the entries coming we read them all.


Mom and Miranda are standing right here waiting for Dad so we can get out of here. She looks strange without a pole strapped to her. Actually looks good!!!! Martin

Thursday, July 26, 2001 at 10:29 PM (CDT)

..................1500....................


growing like gang-busters !!!!!!!


Her and Gail got a four hour pass to nowhere LOL LOL LOL. Gail said she didn't know where to take her. Ended up taking her down stair for a small walk out side. didn't last long with the mask . Just too hot. Said enjoyed watching all the people and was captivated by the fountain in the lobby. She was also tearing up the halls with her "walker". Just talking away and babbling.The hours off of the IV tree seems to be just the freedom she needs.



Going there tomarrow, so keep watch out for tomarrows update........ Martin

Wednesday, July 25, 2001 at 11:10 PM (CDT)

Just want to tell every one that the count is up to ........... 1000...........


Dave if you're out there ..what is an ANC count?????? in cabinet maker terms please !!!!! Miranda's ANC count for where she is should be around 500, and hers is a mere 800!!!! and yes thats good to be higher. I know it involves the blood and immune, but I'm not sure how it all ties together.

I wanted to drive to Duke to night with the cam corder. Miranda was IV-pole-free for a few hours. Gail Said she was walking up and down the hall for about an hour with a push-walker-thingy-toy she got for Christmas. She said even thou the mask,you could just see the smile though her eyes. They would walk a while and gail would carry her , then Miranda would kick to get down and walk the halls on her oun. You got to remember, with all this hitting her, she was barely walking on her oun. She started when she was 12 months. And she's only 14 months now. Don't forget to run over Macie for daddy Miranda.


More tomarrow....... Martin

Tuesday, July 24, 2001 at 09:31 PM (CDT)

..........................900 .......................................... Didn't do a jig BUT I did do a cart-wheel. and yes I did put on my tu-tu and yes I stayed in the closet while I did it and yes I now have to repair the closet and yes................


Three days straight and Gail and I couldn't be happier. Miranda's eyes are a little clearer too. And the rash isn't giving her AS much of a fit as its has been. We're actually thinking of when we can get out of the hospitol for a three hour pass. Would like to jump to out-patient, but we'll get there. Miranda is on what is called TPN. Which is a bag of fluids that feeds her. She was on it for 24 hr.'s a day. She has been eating enough and doing well enough to where they have backed it off to 18 hr.'s a day. this means that if she is off of the TPN and med.'s for that 6hr.'s she'll be IV pole free and can get out of the room for some exercise. Usually gail will carry her and drag\push the pole along. Now she'll be able to actually walk on her oun.

Well more tomarrow......... Martin

Monday, July 23, 2001 at 09:21 PM (CDT)

700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 700 ................. as you can imagine we're upto .......... what was that no. ??? OH 700 700 700 700 .............. In fact this is the SECOND DAY STRAIGHT !!!!!!!!! one more and we're going to do a jig! Some one is going to have to teach me first and bring an oversized shoe-horn to squeeeeeeeze me into a Tuo-Tuo.... but I'll do it.


found out a little info....... the three days over five houndred ( 700 700 700 700) basically means that Miranda has in-graphed. This means that the transplant took and that we have passed (Miranda has passed) the first major hurtle. From here we wait for her counts (WBC) to sore to new levels, which they haven't disclosed, and do another blood test. This test will show exactly whose marrow is making the wbc. If th transplant worked like it should have, The test will genetically (sp?) be the transplant's. We will have a problem if it is her old bone marrow that is producing the wbc. But we're not even going there.


This is the second day of really good news for Miranda. She has been beat up and sent to hell on earth and she is coming back with a vengence! .... whatch out for that right cross Dylan !!!!


Camera is being sent to the great computer store in the sky.............. they want it back and sending a new one........... HUMPH! another wk folks and we'll seee.........


Please sign in guest book ....... I get in and show Gail every wk. end........ Martin

Saturday, July 21, 2001 at 08:39 PM (CDT)

.......... 400 and still holding.......


..........400 and still holding........


Three days at the same same count is a landmark. Exactly what it means no one is quit sure, but we'll take all the landmarks we can get. This is the second day..... and tomarrow is not so far away. Even if it goes to 300 we'll take that too. We're at day 30 and they should steadily be making thier way upwards.

Miranda still has abit of a rash and we were told that is normal and that it is nothing to be conserned about. YEAH! Like we'll quit worring. Well maybe in a year or so after she's out of here !!!!!

I don't know why I feel compelled to pass things along like what I going to pass along......... maybe its to show you how well Miranda really is doing.

As you can imagine .......... alittle boy named Robert was sent home a day or so ago. Gail Asked me if I had noticed that his room was emptied. When I was here last week he was in Ped. intensive care.... not thinking of his room I thought he was still there. His mother had made him the promise that he would not die here (pic). His battle with cancer was one that was long and drawn out. He makes the sixth child to leave sence we've been here. Our thoughts and prayers go with him.

So when I leave this place, as I always dread, My main focus is on my family as it should be. I however can't help thinking of all the kids that have gone before Miranda and say a prayer for them too.

More tomarrow........ Martin

Friday, July 20, 2001 at 07:58 PM (CDT)

................ 400 WBC.............. they're GRowing !!!!!!!!



We're coming to you tonight high upon the fifth fl. of the Duke University Hospitol.


Miranda is still doing great! She has reached a count of 400. Her rash is coming back and we're not sure if thats a good thing or not. Her eyes are red like sinus problems and her nose has been running too. Good thing I'm a cabinet maker, because as little as I know all my patients would be sueing!!!!! they say its normal but she looks so pittifull........ like my spilling........... spelling.
one day you might actually see her via the camera........... no luck as of yet.
Please keeping signing in . love to read everything people have to say.


More tomarrow Martin

Tuesday, July 17, 2001 at 10:49 PM (CDT)

Sorry it's been so long getting back here.

Miranda is still batting a thousand. She now has gotten a WBC of 300. This is really good news. They floated at 100-200 for a wk and we thought they would never take off.

She gets a Med every tues., and NO I'm not going to try to spell it Mom, and this week she had a bad reaction to it. Her blood Pressure shot up and she was having a fit. GAIL ( A.K.A. Mommy) couldn't even calm her down. She didn't want to be held, etc. They took her off of it and she returned back to her cute lovable self.

I will try to get back here sooner..... I promise Dave........ It just hard to tell you every day the same thing in a different way.

Hope everyone enjoys the pic.'s and I will send out a special email once I've got this @#$%$#@ @#$%$^&% *&^%^&^%# **&^%$#$#@@#$%%! digital camera figured out.

Martin

Wednesday, July 11, 2001 at 09:26 PM (CDT)

Not too much to pass on tonight. Miranda still improves. Mom is still entombed right along w\ her. and all is going according to plan. WBC still floats between 100 and 200.

Miranda did get abit of a repreve tonight though. She was taken off the IV tree for about a half hour. Gail took her out in the hall for a walk with out any of the wires, pumps and tubing. HURRAH!

Beginning to think that I will never get this camera to work !!!!! will continue to struggle with it for all of our Miranda fans....... just be patient with me. One of my favorite lines is, "You have to be smarter than what your working on." guess what? (sniff sniff) I'm not.

Monday, July 09, 2001 at 09:32 PM (CDT)

Sorry no pic.'s as of yet because of technical diffeculties. got to install a usb port in computer and that might take a day or two. Found an adapter and it was completely backwards to what I need.
I have updated to pic.'s that are about a wk. or so old. The first shows the central line real well. She has another on the other side. One has two lines going in and one is a single. They're used for fluids, med.'s and chemo. Being right off the heart the blood picks them up and flushes them into the blood stream with little to no damage to her artteries. If they went into a simple vein they would 'blow' the vein real quick. So much for your medical lesson for the day. Now who's going to tech mez engliss????


"Miranda is feeling more like herself today,"Said the field corrispondent (sp?)reporting in today from Duke Univ. Hosp. "She was smiling and holding her arms out to be picked up," was added with a sigh of relief. " the steroids they gave at a high dose is wearing off and they reduced the pain med too." there was a pause , for effect (?) ... I don't know. The reduction in Both can only be a good thing from where I sit though.


Sorry ........... more tomarrow Martin

Sunday, July 08, 2001 at 10:25 PM (CDT)

I'll start of with the fact that we don't have the photos updated to pictures we took this weekend because we're using a different camera. Got plenty of pic.'s but can't down load them on to the comp. due to the fact that it takes a usb port and I only have serial........... @#$%$#@#$#$%!!!
Miranda is still hanging in there with a batting ave. of 5000. She is truely a miricle if in nobody elses eyes than ours. She did walk alittle more this wk. end and today she polished off half a chicken breast !!!! AND... alittle bit of the noodles. She wasn't expected to do any of this for another wk. or so. Dr. Martin was impressed--- HA----- as he well should be :)
No matter good her her condition though..... I have to set every thing in perspective too. No matter how well she is doing and no matter how positive we stay... we see so much pain and suffering up on the 5th fl. Miranda..... as you'll see w\ the pic.'s in a day or so.... is going through her oun personal hell. But the other kids up there are going through just as much and often worse than she is. Think of it this way too, sence we've been up there ( June 12 ) they have sent three kids home because they couldn't do anything else for them. Each given wk.'s to live out thier lives. Sence we have been there we have also lost two kids. Emily, who we knew from the Charlotte area. I really didn't get to know them well till we went to Duke. Emily had MLL which is a different form of luekemia. See was only 9 and loved dolphins. Some how I think she might be swimming with one right now. Roberto is a little fello from Mexico. He was only four. He had had FOUR different BMT.'s and as you can see nothing for him worked. His father and grandfather always asked about miranda and always through broken english had an encouraging thought.
I guess I want everyone to know that just because Miranda is first and foremost in our prayers and thoughts that she could be far worse off. Gail and I both say our oun little prayer and hope everyone else will too.
I suppose I could ramble on for another paragraph or twelve but it would be just that.
Alot of times I know exactly what I want to say............... just getting them down in a fashion that makes sence to every one else is the trick............. maybe if I could draw it out ....... HMmmmmmmm.
More tomarrow........... Martin

Saturday, July 07, 2001 at 08:08 PM (CDT)

OH MY GOODNESS WAIT TILL YOU SEE MY CHILD!!!!!!!!!!!!!!!!!!!!!!!!!!!

The chipmonks have nothing on this child !!

She is on day 16 and still on steroids to help with the graphing. The steroids leave her grouchy and irretable. They have hidden our Miranda behind a mask of glassy eyes and ill-temperedness. She doesn't smile at us as often if at all. She sleeps a whole lot more too. Gail took Dylan to the hotel for a few hours and she spent the majority of it sleeping!

Good news...... Her WBC is up to 200 this is great !! and I brought a toy from home to help her walk when she got ready. She saw it and she was reaching for it every time she got it into view. Gail and I took her for a walk and we put her behind it and she was GOOOONE. We had to race to keep up with her. Not to hard though because she is stil weak. DR. Martin was impressed that she had done it too. Said it was early for her to want to. When we got her back to the room she went to sleep ... imagine that. Dr. Martin said it was because of the type of steroids she's on. They'll wean her off of it on down the road. Even now they haven't really expected her to start to eat. All these glorious meals they keep sending her are given the once over by Gail. Sometmes they get eaten sometimes they don't ..... remember it is hospitol food. Gail was eating a pc. of chicken breast and Miranda stuck out her hand for some and she ate it.
Again Dr. Martin was impressed. So our little girl looks like she's had the kapookey beat out of her. But she's doing really well.
I won't be able to update pic.'s till I get home tomarrow so please be patient. More then Martin

Thursday, July 05, 2001 at 04:34 PM (CDT)

I trust that everyone had a good fourth of July. It was strange to spend it without the women of the family. With the 4th being on a wens. it was had to do around trip in a day. Seven hours in a car and Maybe that long at the hospitol just wasn't very appealing. We will be going Fri. ofcourse.
Our neighborhood had a "Block Party" so Dylan and I fielded atleast a few houndred Questions each about the hospitol.
Miranda as of about 12:30 this afternoon is still batting a thousand. Still has the rash and has been given a "cream" to use on it. She also has a wbc ( white blood count) of 0.1 Cell are growing and we have had no major setbacks. One look at her pic.'s and you can see that she isn't having an easy time of any of it. She is however doing quit well compared to what she could be going through.
When you log on here please don't forget to write a few words. Gail and I get into it almost daily to see and update; and it is helpfull to read what everyone has wrote.
More tomarrow, I hope, will be at duke then. Martin

Tuesday, July 03, 2001 at 10:46 PM (CDT)

I guess I have to remember that when I say I'm going to update the photos, that I should also remember to say that the time available would usually be after 10:00pm est. Or in this case 11:56. Sorry
Miranda is still doing good and the rash is about the same. Her temp. has gotten up to 103* but that isn't out of the norm. Infact it is really goodthat its only been that !!!
The address is on the front pg of this if you want to send cards. Gail is up there all by herself through this ( except wk.ends) and believe me she could use the mail !!!! Phone number is there too if you want to give her just a 5 min. call.
Well as there is more news I will post it. Thank you for all the support, Martin

Monday, July 02, 2001 at 10:23 PM (CDT)

Here I go again..... Sorry for the lack of an update........

Pic.' will follow tomarrow ..... promise!

The really good news is WE HAVE GRAPH VS. HOST DISEASE !!!!!! ok A small case, as is Miranda's, is good. It shows that the transplant has worked and that the cells are trying to grow. Miranda has a 'rash' that would look like a sunburn. It doesn't itch, but she suffers some discomfort and irritation. The PCA pump that delivers meds on a regular basis takes of that. It also delivers a dose of a "narcotic" That eases the pain if any and discomfort. The next step is as always hurry up and wait. From here the cells are to grow grow grow.

As a side Bar........... any one got an extra f 150 ford pick-up laying around? On the way home Sun mine decided to blow a oil pump. Wouldn't have been all that bad had I been by myself. Dylan was with me and added spice to the experience. Was't all that bad really. We broke down around a rather bussy interchange and an eight year old has a problem holding Dads hand while crossing roads.
Ever try to find mechanic on a sun. night???? So today we struck out to find some way to entertain ourselves. A mechanics waiting room wasn't going to contain Dylan........ or Dad. So we solve our problem by seeing 'Atlantis". We did end up at home........... just a day late and a chunch of change short.

more tomarrow and update the pic.' s too

Saturday, June 30, 2001 at 08:16 PM (CDT)

Today was interesting. Miranda was hooked up to PCA pump that would feed a drug to her that would make her more comfortable. Ease the pain and irritation of what she's going through. For her weight she needed 1.0 ml per hour. Well....... it REALLLLLLLYY did the trick . she took a couple hour nap and when she 'woke-up' she was still out of it !!!! she was given a few hours to shake off the effects and was reduced to .5ml\hour. I was watching her as Gail and Dylan went to the hotel and took a break from here. I am used to her sleeping in my arms and being w\o her for the week I thhought it nice to hold her as she slept. I was not ready to have her wake up as a drunk and going back off to sleep.
Dylan's not use to having to be stuck in one place longer than ...... well.. five min.'s. However he is doing pretty good up here in the room. In the hosp. he is only allowed in Miranda's room. No running up and down the halls. He can't go into the Parents room. He's STUCK! in Miranda's room only. Infact if he even has to go off the ward to use the bathroom. Mom can use her bathroom because she's living there with her and can't leave her. I can use the one in the parents room and he is pretty much booted off the ward. Needless to say he's wound pretty tight by the time we're ready to go .
Sorry I haven't been on lately to update this lately. I've been trying to get things done for here,work and home . I will have some new pic.'s for you tomarrow nite.
More later, Martin

Tuesday, June 26, 2001 at 10:11 PM (CDT)