It may break my body, but it will never break my soul.

This blog is hard to write. I have so many feelings pouring out that im not sure how to write them. How to say them. I read recently of a boy named Miles who at 19 had made a huge difference in this world. Its said that if you leave this world better then when you came into it. You made a difference. Have I. Have I done anything to make this world better. I have i truely lived. Jason Aldean says in a song on his latest cd that "Every man dies, but not every man lives." I want to know that i lived. I feel that at 20 years old i have done alot. I have traveled, i have met people from all over. I have confussed people with my accent. I have confussed people with my love for idol. I have made acaquatances become friends and friends become family. I have had people fall in love with what they call my "infectious smile". So in some ways I have lived. In some ways I have made a difference. But is it big enough.

At 20 years old there are things i havent done that i want to do. I want to fall in love, I want to get married, I want to, well you know, I want to have a baby. But will any of this happen? Will i get to live out those dreams? Sometimes i feel like i wont. Some days i feel as though God is preparing me to leave this world. Its not that I dont want to be with him. I dont want to leave behind the world i have grown so close to. I know i can make a difference. I know i can save this world, not by myself. But with my generation. Look at us. We are strong, we are fighters. I want to cure cancer. I want to become an advocate for Childhood cancer awareness. Cant you people see, my generation is being wiped out by a disease that can be fixed. Yet all the government wants to spend money on is a stupid war. A war that is doing nothign but killing people. If we took half the money that idiot Bush spent in Iraq you know what we might have found the cure to one, two or three forms of cancer. I saw a little girl at St. Jude's this week. Who had Ponte Brain Stem Glioma. For those of you who dont know. Its uncurable, there is nothing that can be done. She is dying. That's it. In a few months River will be gone. Why? Why is there only one way to get rid of my cancer. Why do I have to go through a bone marrow transplant just so i can MAYBE live a normal life. WHY? Why does Boey have to fight so hard to live? Why is it that the only medicine that can cure us, can kill us? Why does Mackenzie have to live so far away from her dad and sisters? Why? Why cant they cure us. Why have Mack, Boey and I all had relapses. Why did our first treatments not work?

I feel like crawling up in a corner and crying. Im scared. I want someone to tell me its going to be ok. I want someone to tell me in the end all this will be worth it. Cause right now I cant seem to figure this all out. I thought i was brave. I thought i could do this. Wait I know i can do this. But why does it have to be so hard. Why do i have thoughts in my head, scary thoughts. Thoughts that I wont live to see my little brothers graduate. I sit and wonder what the world would be with out me. Its a hard concept to grasp knowing that when you die, the would still goes on.

No matter what though I will LIVESTRONG. Lance did the world a good thing when he started his foundation. I wonder sometimes that when this is all over. Will i find out why i was chosen to fight this disease. Lance knows why. Lance made a difference. He is a living miracle. But when you think about it all of us are. We all have struggles in life. Some of you might have lost a job, or are not able to have a child. Those are struggles. But we live through it. We dont do it by ourselves though. Its in our times of need that we find one another. Its in our times of need that we truley see God, and know that he is there. This cancer might take me away. But it will never ever win. I will beat it one way or another. I am either going to fight like hell and live or fight like hell and go home.

Please continue to pray for all of us warriors from the smallest to the biggest. the oldest to the youngest. We are all family and we are all warriors and better yet we are all survivors.

Got my line in.

Hey everyone. Well i offically have a double luman hickman line. YAY. not it hurts like you dont want to know. I can barely move my right arm, which sucks cause im right handed. The before part was scary i was way nervous i listened to Free, by Elliott, Imagine by Blake and then Hero by Chris SLigh and then it was time to go. I remember getting my last iv. The man goes you know what God says. Its better to give (poke) then recieve. lol he was funny. I got to push my vercet in. Which calms me down. I got a bunch of pictures of me asleep and with my docs and stuff. I just remeber waking up and asking if someone saw my boobs. Which is a duh question they had to considering the thing comes out right between them. Anyways that is allt hat happened today. I came to my dad's house and slept. Until my bros came home they came back and gave me a hug and stuff. I asked Michael if he wanted to see, i was like you cant see my boobs its fine. Matthew goes its cool dude you should look, he then looks at me and goes sorry it is pretty cool. HAHA. I went to walmart with my memaw after that and i got stared at. But who cares. I guess it does look weird. But i did get cool bandaids to put on the end of the caps lol. Shrek and Hello Kitty. haha. Well i think im goin to go drink the rest of my milk shake cause my throat hurts they stuck a tube down my throat during surgery so yea it sucks. Anywas love to you all.

A special Thank you

Thank you to Marleybone and the wonderful suprise i recieved yesterday. You made my day. I am currently listening to the Half Past Forever cd. Im so excited that i own it now. Also thank you for the poster of my future husband. Its lamenated to (is that how you spell it?) but anyways they said everyhing has to be lamentated and yay that means i get to put it up in my room. IM so excited. Thanks so much. You made a ok day freaking awesome. Love you MarleyBone and i love all fo you bloggers.

the past 2 days

Well its been kinda crazy the past couple days. Yesterday i had a nurse visit where she just asked how i was doing and then i got to leave. After that i went and hung out with Mikey and Pam and then we all went to eat. After that me and mom came back to the room and rested for a bit. That night my friend Angie(whom i met last year at Graceland while waiting on the idols) and her mom Rita came and hug out they brought me a ballon that sings. Which today gave me some enjoyment. This morning we woke up at like 6:45 and got over to the hospital at 7:45. We waited for an hour and yea that sucked. Then gave me 15mgs of Valum. The MRI was still a bit scary i listened to Tim Mcgraw while they where doing my knees im not sure that that is supposed to hurt, but my knee's are still killing me from it. Then when they where doing my hip i got to listen to Justin Timberlake. I was kinda gettin scared cause my head was kinda under the thing but then Sexyback came on and i just closed my eyes and thought about Chris RIch and Blake singing it and i fell in to a peaceful sleep. I woke up and saw my new little friend Cole again. He was so cute. I just loved him. I met him yesterday and he gave me a big hug and stuff. Pray for him to stay cancer free guys. He is 6 years old and lives in B-ham Alabama. Mom and I then went to talk to my social worker to have her contact the american red cross again cause the army is being stupid...yall know that story. Then I had to get stuff about a living will and an advanced directive and stuff like that. Then we went to lunch and im pretty sure the valum gave me the munchies cause i was like mom i need fruit loops HAHA. I got them though. After that i came back to the room and slept till like 6. I just took my last normal show for a while and took my wonderful iodine bath. I hav eto get my line put in tomorrow and im scared. I am finally getin where i can say that. Because i know its ok to be scared. But in the end i know that GOd will take care of me. Please pray that the surgery goes well. Pray for the surgeon and the nurses that will assist him.

For all my idol fan friends. I urge you go to gread Phil Stacey's new blog he talkes about a girl and her mom . The girl had cancer and was a fan of Phil's. The little girl died one the day that Phil got eliminated from Idol. Her last words to her mom where I love you mom and tell Phil i love him. I havent got to read the blog myself but Felisha read it to me. Phil said it pefectly . I dont think the contestants on idol realize who they are to people. I have a few idols that to me make my life easier. Elliott Yamin sings my theme song Free. I wouldnt of made it through this week with out Blake Lewis and his music. I have went to sleep everyday listening to Blake. I even recieved a gift this week. A cd of my beloved idol buddy Chris Sligh, and a big poster of my future husband Chris RIchardson. When i went to sleep fo my CT scan they told me s to shut my eyes and dream of my idols. I just dont know if they really know what they mean to us. But Phil said it the best. so just go read his blog.

Well everyone im headed to bed. I have a big deay tommorrow and im goin to sit here and enjoy life with out a tube hanging out of my chest.

I love all of you. Sleep well and Remember GOD IS GREAT.

P.S. please keep Mikey in your prayers still his blood count still isnot 500. Keep Kody in your prayers too. He is soon to be off treatment and his counts my go down so pray that they say up.

A Blog in honor of my brother Matthew

Yesterday was Matthew's last first day of school I know stupid right. But it is his senior year. I cried yesterday it's crazy seeing my little brothers grow up. I mean it wasnt that long ago that he was running around in his wranglers and button up shirts with a cowboy hat sayign me not Matt me Garth Brooks.

We have had a lot of great times thourgh the years. I remember one time i was stupid enough to pick up a piece of cactus and well it hurt (DUH) so i slung my hand and it flew and hit and stuck in his forehead.

Anyways hear is to you Matthew, my best friend my backbone and one of the greatest brothers in the world im so thankful that God made you and Michael my little brothers.

today

Today has been good i dont remember most of it. I woke up at 6 something to "This Love" thanks Felisha lol. So i just stayed up and got ready. We went and checked and i waited about 5 mins before they called me back. Jennifer was my nurse she was nice. She started the iv, which she put it in the wrong vein, for some reason and then she pushed it trhough the vein and it filtrated, so i had to get stuck AGAIN. no biggie though this was the first time i have ever had to be stuck more then once. I walked back and had to lay down on the bed thing, ok this is when i started to freak a bit. They finally gave me vercet and it was GOOD. They ran me through the machine and put the contrast in my iv, made me feel like i pee'd my pants haha, that was embarassing. After that i dont remember anything, i dont remember putting my clothes back on, i dont remember eating my poptart, i dont remember anything from the 9 to like 11. It is scary and funny all at the same time. After that i went to the dentist. He gave me a new tooth brush and for the first time in a very long time it did not hurt to brush my teeth. THANK GOODNESS. I then went to see the ENT he was really funny, he said every thing look really good. Well tomorrow i dont have much just a visit with my A clinic nurse I get to have my old nurse back for at least one day. yay for Cori. Then a limb sparing which sounds scary so yea nervous about that. I have been enjoying my showers this week. because i know this is the last time in a while i will have a normal shower. Since the line cant be like submerged in water. Well ill update again tomorrow. Please pray for all the kids up here at St. Jude and kids all over the world with this awful disease and keep Boey and Mackenzie in your prayers. Love you all.

this week

Hey everyone. No to much today. I had alot of appointments. mostly about transplant stuff. I found out that my donor is a 20 year old guy from the U.S. I really cant wait for a year so i can meet him. I have alot of stuff i have to do this week. Ill give you the appointments for the rest of the week. More might be added. But anyways, i did all the wonderful stuff. THey took a crazy amount of blood today. I talked with my line nurse. I will be getting that put in on Friday. After all that crap. Me, mom, Mikey and Pam went to Graceland. It was fun. I love that place, i only wish i could of been alive when Elvis was. Anyways here is the stuff for the rest of the week.

Tuesday

8:00 CT PO Sedation (Putting me asleep for a CAT scan.)

8:45 CAT scan

10:00 BMT Child Life (just talk to the child life specialist)

10:30 Dental consult

2:00 ENT visit

Wednesday

10:00 Nurse Visit

2:45 limb sparing If anyone knows what this is please tell me.

Thursday

8:15 MRI sedation

9:15 MRI

2:00 Social Work Consult

Friday

6:45 Prep for double luman hickman line

7:45 Line Placement

12:00 Nutrition Consult


Thats all i got so far. Talk to you all soon Love ya.

How I feel

I recently got news that i was lucky enough to recieve meet and greets form one of my fave. idols of all time. I have told just a few people who they where from. They make me feel like i am not worthy of recieveing these. I got these because this idol and there friends thought I deserved them. Im sorry I got them if it makes people feel better, I wont go. I will let Felisha go and sit out and wait on her. Im sick of feeling like shit because someone offered these to me. I NEVER once asked for them. NEVER. But people make it seem like i did. IM sorry that they think i need a few days of awesomeness before i go through freakin HELL. IM sorry. OK. I hope you all feel better. You have successfully ruined the best news i have ever gotten. Thanks. Thanks alot.

our military

Ok here is the thing i have the upmost respect, for our guys and girls in uniform. But right now im pissed. They where going to let my daddy come home. All he wants is a week early. Is that to much to ask. Now they dont know if they will let him come home, which gets him here the day of or after the transplant. The captian asked my dad today, what are you actually going to do for her besides hold her hand and buy her things. My dad goes, my little girl has a 30% chance of dying in the first 100 days, what else do i need to say. Then he started rambling about how his wife is on anti depressents and stuff. Ok i understand everyone has problems. But this is the next step of my life, I could die. I want my dad to be there with me every step of the way. Just like any family would. So please say a prayer that my daddy can come home. Every girl needs her daddy. Not that my mom isnt enough, i love her and i need her. But once a daddy's girl always a daddy's girl.
Love Amanda

Nothing real big.

No real info today, just sick of being sick. Went to wal-mart today with mom and almost fell over in pain. Im seriously on the verge of opening my self up and taking my spleen out. If i didn't need my liver i would take that out too. My chemo is making my gums sore and i almost cry when i brush my teeth. And if you know me i have a bad habbit of brushign my teeth 5 times a day. Other then that nothing really has been going on. I leave tomorrow for St. Jude. YAY. I actually love that place. There is a laua or however you spell it on Thursday. So hopefully i can go. Today I took one of my beanies and put all my hair up into it. So it looked like i had no hair. I showed my mom and we both started tearing up. I guess its just hitting us my long brown hair isnt going to be here very long. And who knows if it will be back. No telling what color it will grow back. I went into the kitchen to show my g'ma and came back in here and mom was crying. But im pretty sure im going to rock the bald look. Im going to be hot. I know it. HAHA. Well ill update yall monday on whats going on. Love to you ALL.

Feelings

In the past few days i have been told so many things about how people feel. I have been called brave, strong and a hero. Those things are what you call someone who has lived a life of great courage and honor. Not me.

Bravery- brave spirit or conduct; courage; valor.
showiness; splendor; magnificence.
a quality of spirit that enables you to face danger or pain without showing fear.


Strong-mentally powerful or vigorous.
of great moral power, firmness, or courage.


Hero- a man of distinguished courage or ability, admired for his brave deeds and noble qualities.
a person who, in the opinion of others, has heroic qualities or has performed a heroic act and is regarded as a model or ideal.

Im not these things. At least i dont feel like i am.

When people tell me i dont know how you do it. I couldn't ever do it. Yes you could. You buck up and rise to the challenge. Lance Armstrong once said you have 2 choices Give up or Fight like hell. and you know what i have never went down without a fight and i dont plan on this being any differnt.

Im scared, and im weak. I am powerless against this cancer. When i am alone.

But with you guys, my friends my family, MY GOD. I am strong. I have power. I am Brave.

So im goin to do the only choice i see right in this situation. IM GOIN TO FIGHT LIKE HELL.

Days of St. Jude

Well I went this past monday for a bone marrow aspirate. What fun those always are. I got there saturday night and got blood work done. Yay. I then went and hung out with Mikey one of my friends from there. He was inpatient do to his ANC being 0, he finally got out today, its up to 300, he has to stay at the Grizzley house though until its up to 500. Anyways after that i went back to the Grizzley house and went to go get on a computer, well they where all taken so i went outside to sit and listen to my Ipod. Out there i met a girl named Kristina she is 20 only 9 days younger then me. She has had cancer 6 times. She lost her left leg from right above the knee down. She had to have lung surgery the next day. I havent talked to her yet but plan on emailing her tonight to see how she is doing.

The next day i woke up extra early, went to Aclinic. Walked in and looked at my nurse Mary and go um so yea im hungry so tell them to hurry this thing up. I was NPO no food or drink after 12. I put my ipod in and sat on the doc's spinny chair and of course was spinning then i pulled it out in the door way and just sat and watched. Mary came to talk to me and i yelled on accident, cause i had the ipod in my ears. Dr. Ribero came in soon after and talked about getting everythign together for transplant, and told me that they where doing this to make sure the cancer wasnt progressing to much to fast.

Soon after we where done in Aclinic on to Procedure i went. They started an IV and put my chillax meds in there due to the fact i freak out when im put to sleep. We all talked about idol...haha my fave topic of course. When it was time to go to sleep, they let me push the anthetsia into me. Where i fell asleep talking about Chris Sligh. I woke up of course talking about Elliott, they are used to that back there. They gave me pain meds when i woke up so i was completley doped up good.

I went and hung out by radiation clinic with Mikey and Kody. Kody is almost done with chemo and radiation and then he gets to go back home to Georgia for a little bit. Then i got to go eat thank goodness. After that i spoke with my transplant cordinator, she was really sweet and she gave me the date of inpatient Sept 19 so that means transplant should take place Sept 29.

I went and hung out with Mikey all day and then back to the grizzley house for supper. The Memphis Panthers Arena football team where there. They where really cool to hang out with. It was there that i met a girl named Lucy, who had fought and beat CML. She had a transplant and was doing amazing. She was a great artist and drew me a few things to put up in my room. She 10 at the time of transplant and is now 13 and doing great. Please pray that she stays healthy.

Well thats all that happened i have my scedule for next monday ill give to yall and then ill keep you update with what all is to come.

August 20
9:00 A/T General (where they take vital signs, blood, height and weight.)
10:00 Chest X-Ray (to check for pneomia sorry cant spell)
10:15 Visit with a line nurse about getting my double hickman line put in.
10:45 XR Panorex (X-ray of my teeth)
11:00 Pre Eval Conference with B Clinic(BMT clinic)
11:30 Visit with my BMT nurse
1:00 Audiology Evaluation (Ear doctor)
2:30 Echo/EKG (check my heart)

thats all they have sceduled for that day, ill update later if there is more.




Me and my brain tumor buddies, Mikey and Kody



Waking up in procedure




The veiw from my grizzley house room



Me and Mikey

Well love to you all.

Life as it is.

The past few weeks since i found out it was back have been BLAH. I have good days and bad. Days where i cant eat, days where i cant sleep, and days where it is even hard to lay down. Its days like those that im thankful for music and the ipod. Thankful for Copeland, and Elliott Yamin. Thankful for the song Coffee, Testing the Strong ones and Free.


So I have been realizing the past few days how precious my brothers are to me. They are my best friends. My life line, my backbone. Full of jokes, laughter, and random talks. We werent always this close but last year when i got DX and my dad left for Iraq, we realized how much we truely needed each other. They are great, we have always taking my leukemia as a joke, for my family laughter is our medicine. We would go out somewhere and want something the boys would be like tell them you have leukemia and we can get it faster. Just as a joke. but yea they where always there for that funny stuff.

Michael was great last night. He walked in and was singing a stupid stong, and then just randomly starts to play the air guitar, and goes i want to play the guitar and rock out cause im Mike Jones BITCH. yes that is my brothers name well its Michael but yea.

Matthew and I have more of a serious relationship. We talk about life and God and stuff. He is a sweet kid they both are and i dont know what i would do with out them.

Michael and I where in the bathoom today i was blow drying my hair him cleaning his face. I realized today how precious those random times are. When we just get to sit and talk, we talked about me going bald, and him thinking about going bald with me. We talked about his face breaking out and how one side of his hair flips under the other out. I thank God everyday for those times.


So about my cousin and the wreck.

http://www.baxterbulletin.com/apps/pbcs.dll/article?AID=/20070811/NEWS01/708110307

here is the link to what happened. please be in prayer for the family of the victims and for my family for what might be about to happen. As well as praying for Anthony, he killed 2 people and he needs prayers.

Love to you all, God Bless.
Amanda

Maybe Tonight Maybe Tomorrow

By the band Wide Awake.



I heard the news today.
It came out of nowhere.
I wish I could run away,but where would I go?
Is this my destiny?
Something so unfair...
What will become of me?
God only knows.
And they say the road to heaven might lead us back through hell.

Maybe tonight, maybe tomorrow,
we will win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die,so we LIVESTRONG.

My pride is left for dead,as my world gets shaken.
The thoughts inside my head are so hard to control.
I am staring down the unknown,but one thing is certain.
You could break my body,but you will never break my soul.


And they say the road to heaven might leads us back through hell,
but we're holding on for more than stories to tell.
Maybe tonight, maybe tomorrow,
we will win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die,so we LIVESTRONG.

Bone Marrow Transplants

The Nuts and Bolts of Bone Marrow Transplants

Bone marrow transplantation (BMT) is a relatively new medical procedure being used to treat diseases once thought incurable. Since its first successful use in 1968, BMTs have been used to treat patients diagnosed with leukemia, aplastic anemia, lymphomas such as Hodgkin's disease, multiple myeloma, immune deficiency disorders and some solid tumors such as breast and ovarian cancer.
In 1991, more than 7,500 people underwent BMTs nationwide. Although BMTs now save thousands of lives each year, 70 percent of those needing a BMT using donor marrow are unable to have one because a suitable bone marrow donor cannot be found.
WHAT IS BONE MARROW?
Bone marrow is a spongy tissue found inside bones. The bone marrow in the breast bone, skull, hips, ribs and spine contains stem cells that produce the body's blood cells. These blood cells include white blood cells (leukocytes), which fight infection; red blood cells (erythrocytes), which carry oxygen to and remove waste products from organs and tissues; and platelets, which enable the blood to dot
WHY TRANSPLANT?
In patients with leukemia, aplastic anemia, and some immune deficiency diseases, the stem cells in the bone marrow malfunction, producing an excessive number of defective or immature blood cells (in the case of leukemia) or low blood cell counts (in the case of aplastic anemia). The immature or defective blood cells interfere with the production of normal blood cells, accumulate in the bloodstream and may invade other tissues.
Large doses of chemotherapy and/or radiation are required to destroy the abnormal stem cells and abnormal blood cells. These therapies, however, not only kill the abnormal cells but can destroy normal cells found in the bone marrow as well. Similarly, aggressive chemotherapy used to treat some lymphomas and other cancers can destroy healthy bone marrow. A bone marrow transplant enables physicians to treat these diseases with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment.
While bone marrow transplants do not provide 100 percent assurance that the disease will not recur, a transplant can increase the likelihood of a cure or at least prolong the period of disease-free survival for many patients.
TYPES OF TRANSPLANTS
In a bone marrow transplant, the patient's diseased bone marrow is destroyed and healthy marrow is infused into the patient's blood-stream. In a successful transplant, the new bone marrow migrates to the cavities of the large bones, engrafts and begins producing normal blood cells.
If bone marrow from a donor is used, the transplant is called an "allogeneic" BMT, or "syngeneic" BMT if the donor is an identical twin. In an allogeneic BMT, the new bone marrow infused into the patient must match the genetic makeup of the patient's own marrow as perfectly as possible. Special blood tests are conducted to determine whether or not the donor's bone marrow matches the patient's. If the donor's bone marrow is not a good genetic match, it will perceive the patient's body as foreign material to be attacked and destroyed. This condition is known as graft-versus-host disease (GVHD) and can be life-threatening. Alternatively, the patient's immune system may destroy the new bone marrow. This is called graft rejection.
There is a 35 percent chance that a patient will have a sibling whose bone marrow is a perfect match. If the patient has no matched sibling, a donor may be located in one of the international bone marrow donor registries, or a mis-matched or autologous transplant may be considered.
In some cases, patients may be their own bone marrow donors. This is called an autologous BMT and is possible if the disease afflicting the bone marrow is in remission or if the condition being treated does not involve the bone marrow (e.g. breast cancer, ovarian cancer, Hodgkin's disease, non-Hodgkin's lymphoma, and brain tumors). The bone marrow is extracted from the patient prior to transplant and may be "purged" to remove lingering malignant cells (if the disease has afflicted the bone marrow).

PREPARING FOR THE TRANSPLANT
A successful transplant requires the patient be healthy enough to undergo the rigors of the transplant procedure. Age, general physical condition, the patient's diagnosis and the stage of the disease are all considered by the physician when determining whether a person should undergo a transplant.
Prior to a bone marrow transplant, a battery of tests is carried out to ensure the patient is physically capable of undergoing a transplant. Tests of the patient's heart, lung, kidney and other vital organ functions are also used to develop a patient "baseline" against which post-transplant tests can be compared to determine if any body functions have been impaired. The pre-transplant tests are usually done on an outpatient basis.
A successful bone marrow transplant requires an expert medical team - doctors, nurses, and other support staff - who are experienced in bone marrow transplants, can promptly recognize problems and emerging side effects, and know how to react swiftly and properly if problems do arise. A good bone marrow transplant program will also recognize the importance of providing patients and their families with emotional and psychological support before, during and after the transplant, and will make personal and other support systems readily available to families for this purpose.
BONE MARROW HARVEST
Regardless of whether the patient or a donor provides the bone marrow used in the transplant, the procedure used to collect the marrow - the bone marrow harvest - is the same. The bone marrow harvest takes place in a hospital operating room, usually under general anesthesia. It involves little risk and minimal discomfort.
While the patient is under anesthesia, a needle is inserted into the cavity of the rear hip bone or "iliac crest" where a large quantity of bone marrow is located. The bone marrow a thick, red liquid - is extracted with a needle and syringe. Several skin punctures on each hip and multiple bone punctures are usually required to extract the requisite amount of bone marrow. There are no surgical incisions or stitches involved - only skin punctures where the needle was inserted.
The amount of bone marrow harvested depends on the size of the patient and the concentration of bone marrow cells in the donor's blood. Usually one to two quarts of marrow and blood are harvested. While this may sound like a lot, it really only represents about 2% of a person's bone marrow, which the body replaces in four weeks.
When the anesthesia wears off, the donor may feel some discomfort at the harvest site. The pain will be similar to that associated with a hard fall on the ice and can usually be controlled with Tylenol. Donors who are not also the BMT patient are usually discharged after an overnight stay and can fully resume normal activities in a few days.
For autologous transplants, the harvested bone marrow will be frozen (cryopreserved) and stored at a temperature between -80 and -196 degrees centigrade until the day of transplant. It may first be "purged" to remove residual cancerous cells that can't be easily identified under the microscope (see page 30).
In allogeneic BMTs, the bone marrow may be treated to remove "T-cells" (T cell depletion) to reduce the risk of graft-versus-host disease (see page 94). It will then be transferred directly to the patient's room for infusion.
PREPARATIVE REGIMEN
A patient admitted to the bone marrow transplant unit will first undergo several days of chemotherapy and/or radiation which destroys bone marrow and cancerous cells and makes room for the new bone marrow. This is called the conditioning or preparative regimen. The exact regimen of chemotherapy and/or radiation varies according to the disease being treated and the "protocol" or preferred treatment plan of the facility where the BMT is being performed.
Prior to conditioning, a small flexible tube called a catheter (sometimes called a "Hickman®" or central venous line) will be inserted into a large vein in the patient's chest just above the heart. This tube enables the medical staff to administer drugs and blood products to the patient painlessly, and to withdraw the hundreds of blood samples required during the course of treatment without inserting needles into the patient's arms or hands.
The dosage of chemotherapy and/or radiation given to patients during conditioning is much stronger than dosages administered to patients with the same disease who are not undergoing a BMT. Patients may become weak, irritable and nauseous. Most BMT centers administer anti-nausea medications to minimize discomfort.
THE TRANSPLANT
A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.
Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.

ENGRAFTMENT
The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.
Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.
WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.
The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.
During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.
Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.
HANDLING EMOTIONAL STRESS
In addition to the physical discomfort associated with the transplant experiance there is emotional and psychological discomfort as well. Some patients find the emotional and psychological stress more problematic than the physical discomfort.
The psychological and emotional stress stems from several factors. First, patients undergoing transplants are already traumatized by the news that they have a life-threatening disease. While the transplant offers hope for their recovery, the prospect of undergoing a long, arduous medical procedure is still not pleasant and there's no guarantee of success.
Second, patients undergoing a transplant can feel quite isolated. The special precautions taken to guard against infection while the immune system is impaired can leave a patient feeling detached from the rest of the world and cut off from normal human contact. The patient is housed in a private room, sometimes with special air-filtering equipment to purify the air. The number of visitors is restricted and visitors are asked to wear gloves, masks and/or other protective clothing to inhibit the spread of bacteria and virus while visiting the patient. When the patient leaves the room, he or she may be required to wear a protective mask, gown and/or gloves as a barrier against infection. This feeling of isolation comes at the very time in a patient's life when familiar surroundings and close physical contact with family and friends are most needed.
'Helplessness" is also a common feeling among bone marrow transplant patients, which can breed further feelings of anger or resentment. For many, it's unnerveing to be totally dependent on strangers for survival, no matter how competent they may be. The fact that most patients are unfamiliar with the medical jargon used to describe the transplant procedure compounds the feeling of helplessness. Some also find it embarrassing to be dependent on strangers for help with basic daily functions such as using the washroom.
The long weeks of waiting for the transplanted marrow to engraft, for blood counts to return to safe levels, and for side effects to disappear increase the emotional trauma. Recovery can be like a roller coaster ride: one day a patient may feel much better, only to awake the next day feeling as sick as ever.
LEAVING THE HOSPITAL
After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Patients usually cannot return to full-time work for up to six months after the transplant.
Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.
During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.
A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.
LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.
Life after transplant can be both exhilarating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.
Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.
IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.

Chronic Myeloid Leukemia

I thought i would inform yall of what CML is and how it works.

Understanding CML
About 4,570 people in the United States will learn they have chronic myelogenous leukemia (CML) in 2007 in the United States. About 21,501 people in the United States are living with CML (SEER, National Cancer Institute, 2007). The progress that has been made in treating CML gives patients more hope than ever before.
Leukemia is a type of cancer. There are four main types of leukemia. CML is one of the four types. CML starts with a change to a single stem cell. Both children and adults can get CML, but most CML patients are adults.
CML patients have what is called the "Philadelphia Chromosome" (Ph chromosome). Every cell with a nucleus has chromosomes. The Ph chromosome is made as the result of a piece of chromosome 22 breaking off. With CML, there is a switch in pieces of chromosome 9 and 22. The break on chromosome 9 involves a gene called "ABL." The break on chromosome 22 involves a gene called "BCR."
A piece of chromosome 9 attaches to the end of chromosome 22 and the BCR-ABL cancer gene is made. The BCR-ABL cancer gene gives the cell instructions to make a protein that leads to CML.

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Causes and Risk Factors
Doctors are working to understand the changes that lead to the Ph chromosome and the BCR-ABL cancer gene. Some risk factors that may cause these changes are:
Very high levels of radiation (such as atomic bomb survivors were exposed to in World War II)
High dose radiation therapy used to treat other cancers.
Most people with CML do not have these risk factors. Many people with these risk factors do not get CML.There is no link between dental or medical x-rays and increased risk of CML. You cannot catch CML from someone else.
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Signs and Symptoms
CML signs and symptoms tend to develop slowly. Some patients learn about their CML after a routine blood test given during a check up.
Some changes that a person with CML may have are:
Tiredness
Shorteness of breath doing activities
Pale-looking skin
Enlarged spleen
Night sweats
Weight loss
These signs and symptoms for CML are common to other illnesses.
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Diagnosis
Lab tests are used to make a CML diagnosis. They are also used to check a patient's response to treatment.
Blood and Bone Marrow Tests Blood and bone marrow tests are done to look for leukemia cells to find out if a person has CML. In CML, the white cell count increases, often to very high levels. Platelet counts may also be high. Levels of hemoglobin go down.
A CML diagnosis is usually clear from an exam of blood cells. A bone marrow aspirate and a bone marrow biopsy are two tests that are done to look at the marrow cells for changes that can't be seen in cells in the blood. These tests may help the doctor to choose the best treatment for the patient. The tests also help the doctor to follow the effects of therapy.
Cytogenetic Analysis Cytogenetic analysis is a lab test to examine the chromosomes of the leukemia cells. This test helps the doctor to find out if the patient's type of leukemia is CML.
FISH is a lab test used to measure the patient's percent of CML cells.
PCR is a very sensitive test that is used when there are no CML cells found by FISH.
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Phases of CML
CML can have three phases:
The chronic phase
The accelerated phase
The blast crisis phase
Most patients are in the chronic phase of the disease when their CML is found. During this phase, CML symptoms are less intense. White cells can still fight infection. Once patients in the chronic phase are treated, red cells and platelets can do their jobs. Most patients can go back to their ususal activites.
In the accelerated phase, the patient may develop anemia, the number of white cells may go up or down. The number of platelets may drop.
The number of blast cells increases. The spleen may swell and the patient may feel ill.
During the blast crisis phase:
The number of blast cells grows in the marrow and blood
The number of red cells and platelets drops
The patient may have infections
The patient may be tired and have shortness of breath, stomach pain, bone pain or bleeding.
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Treatment
Some CML patients may want to get a second medical opinion. It is important to get treatment in a center where doctors are experienced in the care of patients with CML.
Chronic Phase Treatment - Drug Therapy The goal of treating chronic phase CML is to bring the level of blood cells back to normal and to get rid of all cells with the BCR-ABL cancer gene.
In chronic phase CML, treatment usually returns the level of blood cells to normal. The spleen shrinks towards normal size. Most patients don't have infections or unusual bleeding.
CML patients begin treatment with a drug called Gleevec. This drug has been FDA-approved since 2001. For some patients, Gleevec keeps CML under control for as long as they take the drug. Some patients taking Gleevec have strong side effects or the drug does not work for them. Patients who do not respond to the usual dose of Gleevec may do better with a higher dose.
For other patients, there are two newer drugs called Sprycel and Tasigna. These drugs also block the BCR-ABL cancer gene. They work in a different way than Gleevec. All three of these drugs are taken by mouth.
Most patients being treated for chronic phase CML can go about thier day-to-day activities. With drug treatment most patients are symptom free for very long periods (called a remission).
However, patients are not cured of CML with drug treatment. They are checked carefully for any signs that CML is returning (called a relapse). They will need regular health check-ups, including blood tests. From time to time a patient will need a bone marrow test.
CML is likely to return if drug treatment is stopped. The disease may also return if the drug treatment stops working (called drug resistance). There are other drug treatments patients who develop resistance to a particular drug.
Leukapheresis Some patients have very high white cell counts at the time the doctor discovers their CML. This can reduce blood flow to the brain, lungs, eyes and other places in the body. Patients can have white cells removed by a machine. The process is called leukapheresis. A drug called hydroxyurea (Hydrea®) may also be used to decrease the white cell count. After the white cell count drops, Gleevec can be started. Leukapheresis can be used for patients diagnosed with CML in the first months of pregnancy, when drug therapy may be harmful to the unborn baby.
Accelerated Phase or Blast Crisis Phase Treatment The goal in treating accelerated or blast crisis phase CML is to kill all cells that contain the BCR-ABL gene or to return the patient's disease to the chronic phase. Gleevec, and for certain patients, Sprycel, are important treatments for accelerated or blast crisis phase patients. Stem cell transplantation is another important treatment for certain patients.
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Treatment Response
Measuring treatment response is very important. The doctor may use the terms hematologic, cytogenetic or molecular remission (response). Blood tests can be used to see if a patient has a complete hematologic response (red cell, white cell and platelet counts are normal or near normal).
A blood test or a bone marrow biopsy may be used to do FISH and/or PCR testing.
FISH is used to measure the patient's cytogenetic response (the percent of CML cells that remain). PCR is used to measure the patient's molecular response (the extent to which the BCR-ABL gene is decreased). Most CML patients in chronic phase CML have a complete hematologic response with Gleevec. Many of these patients go on to have a complete cytogenetic response. They may also have a partial or complete molecular response. There are other treatments for patients who do not get a good response with Gleevec.
Side Effects of Gleevec and Sprycel Treatment Many treatment side effects go away or become less noticeable over time. Gleevec may cause some side effects. Most can be handled without the need to stop the drug. These more common effects include:
Swelling from too much fluid in the body
Puffiness around the eyes
Nausea
Vomiting
Muscle cramps
Diarrhea
Rash
Bone and/or joint pain
Too few white cells and/or platelets.
Gleevec may also cause loss of bone minerals. In rare cases, the drug may affect the heart. The doctor will check patients for these possible side effects.
Side effects of Sprycel may include:
Too few white cells and/or platelets
Too much fluid in the chest
Diarrhea
Headache
Low calcium levels in the blood
Slight changes in liver function.
Doctors are studying how CML drug treatment affects pregnancy. They want to learn if Gleevec, Sprycel and other CML drugs cause miscarriage and/or birth defects. In the meantime, most doctors advise women in treatment for CML to use birth control. Speak to your doctor for more information.
The Society's free booklet, Understanding Drug Therapy and Managing Side Effects, has more information about drugs and side effects.
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Stem Cell Transplantation
A stem cell transplant (sometimes called a bone marrow transplant) is used for some patients with CML.
Donated stem cells (allogeneic stem cell transplant) or the patient's own stem cells (autologous stem cell infusion) are injected into the patient's blood after chemotherapy ends.
The Society's free booklet, Blood and Marrow Stem Cell Transplantation, has more details on this topic.
Allogeneic stem cell transplantation can be a high-risk treatment. It is the only treatment that can cure CML. Gleevec or other drugs can control CML in many patients for a long time. The decision to do a transplant for CML patients depends on:
Patient age
Overall health
How well the donor cells and patient cells "match"
The patient's response to drug therapy (the degree of cytogenetic response and molecular response).
The decision also depends on the patient's understanding of the benefits and risks of the transplant. If the doctor thinks a patient might benefit from a transplant, he or she will talk about these factors with the patient. This procedure is most successful in younger patients. Patients up to about 60 years of age who have a matched donor may be considered.
Doctors are studying a type of stem cell transplant called a nonmyeloablative stem cell transplant or mini transplant. It may be helpful for older patients.
Donor Lymphocyte Infusion CML patients whose disease returns after an allogeneic stem cell transplant (called a relapse) may be treated with Gleevec, Spycel or another CML drug. Another treatment choice is a second transplant. Or patients may be treated with a donor lymphocyte infusion (an infusion of white cells called lymphocytes from the original stem cell donor).
Many CML patients cannot have an allogeneic stem cell transplant. Doctors are studying the use of a patient's own stem cells in these cases. This is called an autologous stem cell infusion. During the chronic phase of CML, stem cells are taken from the patient's blood or marrow and frozen. The stored stem cells are infused back into the patient's blood after treatment with chemotherapy ends.These stem cells may help the body make healthy blood cells after treatment.
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Clinical Trials
Clinical trials are used to study new drugs, new treatments or new uses for approved drugs or treatments. Doctors are studying other drugs for CML. Questions to be explored include:
Would Tasigna be useful in patients who cannot take Gleevec because of severe side effects or poor response?
Would Sprycel would work as well or better than Gleevec as a first treatment of chronic phase CML?
Would using more than one drug at the same time is more helpful than using a single drug?
Would drugs, such as VX-680, help CML patients in the blast crisis phase of CML who have not responded to other treatment?
Another goal of research for CML is to use vaccine therapy. This type of vaccine would not prevent the disease. Instead, the vaccine would increase the immune system's attack against remaining CML cells. The goal is to keep the disease in remission for a longer time. Three CML vaccines under study, AG-858, CMLVAX and PR1 are described in the Society's free publication, Vaccine Therapy Facts.
Doctors are studying a type of stem cell transplant, called a nonmyeloablative stem cell transplant (or "mini-transplant"). Scientists are studying using umbilical cord blood as a source of stem cells for transplants in children and adults. This provides another possible source of matched, unrelated stem cells for patients without a matched, related stem cell donor. Results from cord blood stem cell transplants are promising.
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Related Disorders
There are other types of CML that do not involve the BCR-ABL cancer gene. These other, less common types of CML are called chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia and chronic neutrophilic leukemia.
For more information on these types of CML, see the Society's free fact sheet, The Chronic Myelomonocytic Leukemias (CMML).
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Talking to the Doctor
It may be helpful to write down questions to ask your doctor. Then you can write down your doctor's answers and review them later. You may want to bring a family member or friend with you to the doctor. This person can listen, take notes and offer support. Some patients record information and listen to it at home.
Questions to Ask Your Doctor
Find Support
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Get More Information
Further details of treatment and supportive care and the beneficial and adverse effects of treatment may be obtained from The Leukemia & Lymphoma Society's CMLLinks Web site and from our free publications CML: A Guide for Patients and Caregivers and Chronic Myelogenous Leukemia.
The Leukemia & Lymphoma Society offers ongoing education programs featuring leading leukemia specialists discussing the latest issues in the diagnosis and treatment of leukemia. Follow CML News Briefs on the CML Links home page and visit the Teleconferences page of the CMLLinks Web site to find out about upcoming and archived programs. These programs are offered at no charge.
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Contact Us
The Leukemia & Lymphoma Society 1311 Mamaroneck Ave. White Plains, NY 10605
or call the Information Resource Center at (800) 955-4572.
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Helpful Links
CML Medical Monitor Visit this online health tool and educational resource for people living with CML. Features a treatment progress tracker to help you monitor your responses to therapies. National Cancer Institute This site offers comprehensive information about cancers and the diagnosis procedures.
Medicine Online This site offers information about diagnosis and treatment (including immunotherapy), with pages written by several physicians. Go to "cancer links/leukemia/current".