The Leukemia & Lymphoma Society Community : Popular Threads - Tell Us Your Story

17 years old, cured at the age of 7, still has a problem

communityreply@lls.org — Tue, 17 Nov 2009 03:12:59 GMT

Hi, i am a teenager who was cured from acute myeloid leukemia at the age of 7 after a year and a half fight. I never had second grade and miss most of my 1st grade. Now I am one of the most intelligent guy at my school. I only have a problem which I don't know if it is related to the decease. I haven't grown up since I had 13 years. Not a bit. If you check my photos form 4 years ago, you wouldn't think that that photo was taken 4 years ago. I even have a healthy younger brother (15), who everybody says he is way older than me. I don't know if this has something to do with the decease. I eat tons of food each day and still I don't get over the 85 pounds. If someone knows a case similar ot mine, please write back.

plz can someone help me

communityreply@lls.org — Thu, 19 Nov 2009 15:06:28 GMT

My husband is in hospital again, he has leukemia with excessive blastosytes pls forgive sp. He is fighting the fight of his life this time, as he was here at home, he had been receiving help we had a nurse who came here, our family dr had set up the lab to check his blood counts every other week, if he needed blood or platelets we would get a call and head up, well the last time they called he tried to shave first and got very frustrated and missed the underneath, I didn't tell him as I didn't want to upset him, I was trying so hard to get him to get dressed as they were waiting for us, well we were real late getting there and the dr familiar with us both was gone home, the other doctor became very concerned kept saying over and over how very low his platelets were and I must've asked her 20x's how low only to hear the samething oh they are so low, she said she thought he must have blood on his brain and set up a ct scan, anyhow next thing she comes in and tells me she has this doctor who is going to take over as our family doctor, I said no thanks, we have a doctor, he has been taking care of my husband for over 20yrs, anyhow she didn't seem to hear anything I said next thing I know this other doc comes in tells me she is admitting him, I asked why she said he is a very sick man, I said I know however we have it taken care of, we have a nurse set up the lab etc... anyhow she heard nothing and did it her way, I was told it was needed as he was very ill she said she wanted to put him in palative care I said no, he has made it very clear this is not what he wants. Anyway she told me he was going to unit 43 the am arrived I headed up, just so you know I have a severe problem walking I do have a walker but should be using my wheelchair now but cannot as I have too many stairs and my hubby needs me, so it takes me quite awhile to get where I am going, I arrived went to unit 43 as thats where she said he was going, I went to the desk asked how he was and if I could plz see him, the nurse looked and said I am sorry he isn't here, I said plz can you check again as they even called me just as I got home to say he was heading up here and all was well at that point, anyhow it turned out he was on another unit and it had just been remodeled so many of the elevators weren't working it took me oh so long to get there, plz forgive me I know its taking me so long but I must exsplain this part or you won't understand much of what is now happening. I get to the unit they said oh dear he is in the very last room down this hall, I remember thinking gosh that nurse looks so familiar, anyhow I got to his room, right away he said honey plz take me home, I said okay let me find out what is going on, he said plz honey I really want to come home, I said just hang in there for a few minutes I just got here and I need to find out just why your here ok. Well in walks that doctor from the night before, right off she says to my husband your mental, you sir are a dying man and refuse to realize it! He looked at her with shock and utter contempt but he didn't say anything, my blood was boiling, she then states she is going to put some kind of a (c) something or other hold on him should he mention leaving again, well then she states he has a fever of 104 plus he has pnemonia, he imediately looks at me and says awww honey I can't go home if I have a fever and I am gonna have to take antibiotics, then she says well perhaps you do have some sense about you afterall so I won't have to put this on right now afterall. Well then she walks out with her head in a huff ( I really have a great deal of contempt for this woman sorry) well a few minutes later the nurse came in, for some reason I honestly don't know why as I had not ever done this before, I said to her so has he been running a fever at all, she looks at me with a kind smile and says no as a matter of a fact I am so pleased with him, during the nite he had a slight fever but nothing real high, I said does he have any signs of pnemonia or anything, again no his x-rays all look real good, so now I am thinking hmm what in blazes is going on here. Than a nurse who has known us both since he was very 1st diagnosed back in 2002, says to me hon you got to get him out of here, I said but I can't that doctor says she will put some kind of a mental hold on him, she really scares me, anyhow he was sceduled to see the physio people the next day so we agreed we would wait and see what they said as he was having abit of problems and he knew I couldn't possibly look after him alone, okay I left as visiting hours were over. The next day they called me and said the dr had asked them to call me as they weren't able to get any answers from him, I asked why and all they said was they didn't know just he wasn't able to answer them, so I told them everything they wanted to know and went up to meet them, I just got there when one of the people came she said to him are you going to go to physio he said no, I said wait a sec, I told him they had phoned me to come and if he was able to do what they needed they were gonna let him come home so up he got and I helped him into his sweats, when we got there they saw I was in tears and having great difficulty they made notes that I had severe trouble walking, I asked why as I wasn't the patient ( i had a good idea but) anyhow they said it made a huge difference in whether he was able to come home, but he walked great for them, got in and out of bed, tub everything, sorry this is so long, well the doc there said I see no reason why he can't go home, oh he was happy to hear that, off we went, and when we got back to the unit both of us were just exausted,we fell asleep waiting for her to come and tell us he could go, in come the nurse who had told me to take him home, now she is a really exsperienced nurse, shetold me I should take him, her exact words were I don't know what kind of a game this doc is playing she was paged 2x's she knows its us and we need her to sign this form, she never replied plus now she is off hospital grounds, we both said we didn't want to do anything wrong she said no not to worry as he had been released by physio, she also told me that she had been giving him only 5mils of his pain meds 2x's a day where at home he took 80mil 2x's a day. Ok, now I am gonna tell you something reallly important, the nite before he had asked me to check with the nurses station before I left to be sure nobody mainly his oncologist had switiched him from a full resutation, incase his heart stopped, he had never asked anything like this before I said ofcourse hon, I did and sure enough he had been switched, she looked at me, and said nope I won't give him cpr, honest her exact words were he is old and he is dying anyhow so why would I as his ribs will crack I'd have to shove a tube down his throat and hook him to a ventilator, she said is that what you want, I said well I would like you to plz come talk with him, she did, he pleaded with her, he told her he was fully aware of what would happen however he wanted to live as long as possible, he especially wanted this Christmas as the past 4yrs each year something had caused us to not be able to have a tree, or turkey etc........so this was so important to him. She asked me to plz stay for abit I did, she came back in assured us both she had fixed everything he had nothing to worry about everything possible would indeed be done for him, he looked so relieved, she told me it was now in his file and we needn't worry.

Ok now part that is so terrifying to me, he was here at home as I told you when this happened, ok he had been doing well except at night, he was afraid of the nights for some reason, I kept telling him he was safe he was now home, I have found out since it was due to the change in his pain med, as this doctor now tells me he was suffering severe withdrawals, well he was fine when the nurse was here Saturday afternoon, infact she tickeled his feet he told her he was gonna put her over his knee and spank her, she lhbo and said now theres my buddy, ok she told me he should be fine, she would be back the next day I said okay thanked her and she left. A few hours passed and all of a sudden he began making odd noises and I could see he was struggling to get up, I tried oh gosh how I tried to help him to no avail, something told me something was real wrong so I called the nurses line, she heard him in the background and told me he was dying, ofcourse she scared the begeepers out of me, I hung up and dialed 911, when they got here they hooked him to oxygen and an iv, the one said I couldn't go due to walker too much trouble, I asked where they were taking him, they said the Foothills, I told him he had always been treated at the Lougheed, anyhow they took him to the Foothills assuring me his file would be transferred, the other fellow asked if I was going, I told him I so wanted to he grabbed my walker and said let's go I'd like you to come, I sat in the back with him even, I talked to him when they allowed he seemed so happy I was there, anyhow we got there for a good 15mins I was still with him,then they said they were taking him back in about 10mins they'd come get me. I am serious it was a good hour, this volounteer came out and wanted to know if I wanted an orange juice, nobody else was asked so I knew something was bad wrong,anyhow finally this grief counselour came and said the doctor wanted to talk with me, he told me he was likely gonna die within the hour, I said what no how, anyhow again with the he is old, I was angry I said he has a form that was just done that assured everything humanly possible would be done he said nope no form anywhere in his file, I said contact the other hospital as almost everyone there knows about it they all know us. He said if that was what I really wanted he would but he couldn't tell me that ICU would agree. I asked if I could see him they said the nurses were busy with him, anyhow I looked down this aisle and just knew it was where he was, there were many nurses all around him, I again had to go out, I waited at least another hour when he came again with the lady, ok he says his blood pressure is real low, his heart rate is real low, its gonna stop within an hour I am sure and I won't give him anything to help him, I said what again same argument, only this time I couldn't change his mind, however I was finally taken to him, as soon as he saw me, he was honey plz come here, where have you been, I said hang on I am coming I couldn't help it, well then this other doctor, a woman comes on, she asks me a couple of questions and she says to the nurses a bunch of things I didn't understand all I know is all of a sudden awhole lot was going on, she said no way was she going to just stand by and watch this man die if she could possibly save him, I burst into tears of sheer joy, I couldn't thank her enough, the entire ER staff was amazing so kind and caring to him,enough so that he took off his mask and told me how sorry he was for keeping me up every night, I told him not to worry about it, he said nope you go home, rest up, then honey come back exact words were and get me the hell out of here. The doc agreed saying I needed my rest too and they would bkeeping a real close watch on him however his signs were much better and if there was any change they would call me, ok I came home and tried to process everything that had happened, it was like a nightmare I couldn't believe this had happened, but now I don't know what to do, everytime I go up they say he won't survive he has the h1n1 strain, oh and btw would you give the vacination to a man you said was going to die in 1hour, he did, now he has it, okay he was here at home never once went out, so how, the only one here was the nurse. My problem is I don't know how to help him, as soon as he realizes I am there he yells at me to hurry, I go in after gown,gloves,mask, visor, anyhow he is tied to the bed, his feet and hands as he keeps trying to take everything off andout he pulled his cathitor so it is just full sheer blood, oh its difficult to see him like that, and I must have talked to 5 different doctors not one is willing to admit the form was in the file, all say he is a dying man and they won't do anything to help him, I said he is a real fighter but I am terriffied, his mother passed away in the room next door, he knows this, he gets so very upset he just keeps asking me to plz get him the h out of there, I can't as he is so ill, however I am barely allowed to see him, if I leave the room while I am there they bitch at me for wasting a gown its unreal, he has never ever said these words and he did, the am after he said honey help me, they are being real mean to me and hurting me, he has this oh my gosh bruise he didn't have before I asked him he said I told you they are being mean to me, I saw them they were so rough, his blood pressure was sky high, he has always done better with me there, I am sure he can't figure out what the heck is going on as they keep telling him how very sick he is yet they won't let me stay with him, I even called the nurse I spoke of fromthe other hospital,she appologized, said how very sorry she was they had no beds, and she said she herself had made sure the form was indeed in the file, how can I get help I have tried the legal team they say if he isn't able right now its no good, nobody will help me, they tell me they'll call each time my phone rings I just anyhow I appologize I know I wrote a book, but they have put him thru so much I feel the least they can do is grant his wish for cpr, last yr they promised him a bonemarrow, gave him too much narcotics, doctor looked at him, after he had gone thru the chemo, toured the place from the radiation to where he would be, all he says oh heck he is too weak, the chemo will kill him its canelled, I tried to tell him it was the narcotics they were giving him, he said nope its not, well it turned out it was by then too late he had cancelled, so in my opo the very least he deserves is his Christmas it means so much, I won't lie I know him so well and love him so much, I am scared out of my mind, he looked so bad yesterday, oh God when I saw his eyes, all glazed over yellow, don't know why and I could tell his nurse was big time lacking in bedside manner, it was so very much trouble if I asked her anything, oh God if I could only get him to the other hospital, but can anyone tell me how or who can help, I am his wife and honest to God they treat me like oh her again, because I asked how come one hospital says its in there, the nurse was even willing to talk to whoever on the phone oh heck no,than they said oh we feel your upsetting him, also wasting too many gowns you'll need to leave, but then they saw my coat, I said I am as I have to help him not hurt him and I know he is upset, he screams at me to get him out of here, I glanced at the nurse and said she knows thats what he wants she heard him,she just put her head down, what can I do, plz we have never ever had any kind of these problems at the other hospital, he was there almost a fulll yr last yr no problems the nurses are all great to him. I am so very scared. Plzz forgive the length of this. I so appreciate any help possible,thank-you and God Bless!

My road from chemo to alternative: Non Hodgkins

communityreply@lls.org — Mon, 21 Sep 2009 18:00:47 GMT

I was diagnosed with Non Hodgkin’s Decease - cancer of the nymph glands. What I experienced and discovered in my journey this year may be of value to some.

I had three chemo treatments and all of them was like visiting hell and staying there. I got all of the side effects in the book. Then to add insult to injury, I used Duragesic patches for the severe pain - these are patches you put on your body and the active ingredient are released through the skin over a period of 3 days and is about 81 times stronger than morphine. They are very addictive and I have been using it for about 6 months. So in short I were addicted to them and when I come down in the strength it had severe side effects. It’s like being on LSD.

At the same time I was diagnosed the dad of a person that works for me, got cancer at the same time as I did. He had stomach cancer and was given 6 months to live. The only alternative they gave him was to remove his whole stomach and with no stomach you cannot live. He by chance heard about a lady that was treating people with the Rife machine. He had 10 treatments and thereafter he had a scan and they went down with a viewer into his stomach and they found no traces of the cancer. The doctors could not believe it and had all sorts of excuses but refused to accept the fact.

I contacted this lady and she gave me four treatments on the Rife machine over a period of a week. Thereafter I went for a pre-arranged scan and blood count to my chemo doctor. The cancer tremor that grew aggressively and cracked one of my ribs in the process was nowhere to be seen. It disappeared completely. The doctor could not believe his eyes when he read the scan report. He responded by saying that although we cannot see the cancer it does not mean it is not there. The blood counts showed excellent figures far beyond what was expected. Especially my immune system figure was way beyond the expected because the chemo treatment is focused on destroying the immune system in order that the body can produce new white blood cells that are healthy. The bottom line is the Rife machine did indeed cure my cancer.

To be sceptical about alternative cancer treatments are normal because there are many on the web that makes outlandish claims that are all false. I have spent months on the web investigating all of them and found that the most is hogwash.

The Rife machine is something all together different. It can not only cure any type of cancer but aids and many other deadly deceases. It can also kill viruses. Remember it is the principle that works. Each cell and virus has its own unique frequency. Once you have the frequency you can either kill or modify that cell or virus. With the cancer cell the inside that contains the cancer, is killed and the cell then changes to a normal healthy cell. Cancer is caused by a virus and the Rife machine kills this virus as well. It thus kills the cause of the cancer, that which normal medicine cannot do. In a normal healthy body the body is in balance with the cancer cells in the body. When the cancer cells became more than the body with its immune system can handle, than your typical cancer manifest itself in one organ or another. To bring the body back to its balance the cancer cells must be reduced by making them normal cells again, the virus producing these cancer cells must be killed, the immune system must be repaired to its full strength and lastly all these toxic waste created must be removed from the body. If you do not do all four success is not guaranteed.

Lastly. All of this was discovered by Dr Rife in 1930 and he showed and proved it in practice by curing 12 of 14 cancer patients that conventional medicine wrote off to die. Later the machine also cured these two. Then several general practitioners bought his machine and started treating patients also with 100% success rates. This is when the medical authority and large pharmaceuticals in the USA stepped in and drove Dr Rife and his machines out of existence. If a simple machine can cure you, all of them would be without a livelihood very soon. Thus they instead opted that many millions of cancer patients rather die than them losing their money. Read the full story on the web. In the 1970’s scientists rediscovered the Rife machine and were only able to rebuild it in the late 1990’s. Since then this machine was improved to the product we have today.

A long story but a critical story because lives are dependent if you believe it and have the conviction that it works or not. I know it works because it worked on me and another.

Diagnosed with AML & Needing a Transplant

communityreply@lls.org — Thu, 01 Oct 2009 16:34:45 GMT

I'm a 37 year old mother of two who was diagnosed with AML in August 2009. I've just come home after finishing my first induction. I went for a count check yesterday and was told by my Dr. that my genetic results were poor and therefore she doubts I've gone into remission and she told me that I'll need a transplant. My brother has been checked but he's not a match. I thought that the orginial diagnosis was bad but this news has hit me hard. My Dr. told me that 30% of people don't make it through a transplant and my chances of staying in remission if the transplant was successful was about 40%. I have a 5 year old and a 19 month old and I am terrified. I have Dr. Yee at Princess Margaret in Toronto who is very good but I'm looking for anyone who has been through this who could help me feel more positive.

My Life with Leukemia

communityreply@lls.org — Wed, 23 Sep 2009 23:04:43 GMT

I swear they say you'll never forget the day you were diagnosed, and they are right I never will. It feels like as if it was yesterday. It was on a tuesday at college and I just wasn't feeling right something was really wrong. After I left the class I went to go babysit for my moms boss, well as I was driving there I was really getting sick so I figured I would stop off and get a milksake cause cold drinks always help me feel better well it didn't go as I planned. When I got the house the father said the toddler was sleeping and that he should be up in an hour or so, I was like ok. Well he then left and I went and sat on the couch watching some t.v. and all of sudden the kid started to cry and as I went to walk up the stairs I got severly light headed and dizzy and got extremely sick to my stomach on top of that I could barely walk on my right left it my knee was hurting me severly. So so as I approached the kids room I almost blacked out and got sick to my stomach so I ran to the bathroom and sat on the floor near the toliet. Then I decided to go the sick to drink some cold water which helped out very much. Right then in there I was like I can not watch this kid, so I called the dad and said you need to come home something is severly wrong with me. When he arrived home he was concerend about me and asked did I need a ride home instead of me driving, I said that I would be fine I am going to go to my moms since she lived only 10 mintues away from where I was babysitting.

Well I called my mom to let her know I was going to be at her house, and that I wasn't feeling to well. When I got to her house I went straight up to her room and passed out! My mom had then come home and woke me up and felt my head and said I was burning up. We took my tempature and it was 102.5 we immediately paged the doctor. We paged too doctors my allergist and my regular physical, well we only got one call back and that was from my allergist. She told me to come in on thursday at 11:30, she was not opened wednesday so I could not go in the next day. She perscribed an antiobotic until I saw her to bring down my fever. Well me and my finace went in on thursday to see her, we were there before she was and when she came in I was seen right away.

When I went into see I told her everything that was going on, I had a rash from head to toe, I had lumps all along my jaw line behind my ears in my head, my teeth hurt to brush or eat, my left wrist hurt to use, my right knee hurt to walk on, and I was severly tired. As I told her all of this she hmmm. Then she said I want you to go right now and take these blood test. So we left her office and I went and got the blood test. The test had to be done in both arms two tubes taken from one arm and two tubes taken from the other arm and this was about 12:00pm on the January 13th. Nothing could have prepared me for what I was about to hear 4 hours later at my home over the phone from my allergist. When my cell phone started to ring and the her number came up I started to freak out I was ok this is not good. As I answered I said hello and she said Jessica I don't know how to tell you this but you have Leukemia and I was like I have what???? She repeated again and said she had some things she need to discuss with me and I said I can't talk to her right now, but that I would call her back. After I got off the phone I looked at my fiance and said I have cancer and broke down and started to cry. I couldn't believe anything I had ever heard about Leukemia was that you died, so I figured at the age of 19 my life was over. I just started to live! I told my finace we have to go see my grandma we need to leave now. I said I need you to drive I can't

We got into the car and left for my grandmas work as we arrived only 4 blocks down from where we lived. As I got out of the car I had to pull my finace out of the car because he was so upset he couldn't get out of the car. As we walked in I couldn't keep my composer. I started to cry again and I said grandma I have Leukemia I have cancer. Now by this time we had already dealt with my mother and breast cancer but it was light and not too bad she only had 4 chemo treatment, and then 6 months earlier my grandpa just covered from prostate cancer, he just need surgery thank the lord. But I, I was the worst. As I looked at her I said can you call my allergist I can't talk to her right now I am to upset. My grandma called my allegist and she explained that an oncologist would be calling me not just any oncologist a pedatric oncologist. I was going to be going into the children's hospital because I was under the age of 21. So now we had to wait for this oncologist to call us. My grandma got off of work at 5 and lived 3 blocks down from work as we left and drove to her house I got a call from the oncologist saying that they were getting a bed ready for me in the hosptial and that I was coming in that night and that I would have some test done. He also said that they will be calling me when the room is ready. Until they we sat at my grandparents house until we go that call. We told my grandpa what was going on and no one could eat. The look on everyone's faces was so painful.

As we sat and wait we called my mother and said don't call anyone else until we know for sure what type of cancer your daughter has. But of course my mother had to call my aunt and how we knew about this was when she pulled into the driveway and said to me humorsly what the hell Jessica don't you get enough attention and we all started to laugh. Wow we need the laugh. Then my parents pulled up and all of sat there trying to figure what type of Leukemia I wanted to have so I could survive this. We were looking in every health book.

Well at 8:00pm I finally got the call to go into the hospital and all of us went to the children's hospital together. When I got there my room had a crib in it because they thought that I was 19months old and not 19 years old so we took pictures of it until they got me a bed and we laughed about it. We all had to laugh at something. When I received my bed I sat on it and all of us waited until the doctor came in. No one wanted to leave until they knew what was going to happen with me. When the doctors came in they said they were going to start the chemo that night and 12 hours later I was going to have a bone marrow and a spinal tap I was like ok sounds scary. But it had to be done in order to determine what type I had and if it was in my head and spine.The doctor continued to fill us in on how the treatment was going to go I was going to have 8 months of heavey induce chemotherapy and 1 1/2 of maintence. The also said there would be a protocol I would be following as well. I had a few questions of my own and of course they were am I going to lose my hair, will I be able to have kids and can I still go to school. They said I will lose my hair, I should be able to still have kids, and I should stop going to school because the chemo was going to bring me down.

After they explained everything they left and my family eventually left around 11:00pm. But were there bright and early the next day Including my fiance who stayed the night in the hospital with and never left my side. Early that moring which was Friday January 14, 2005 the oncologist and nurses came in and said we are hear to take you to get your bone marrow done and spinal tap and I was like oh goody. Well after the test were completed the oncologist came later that day with the results and said I had Acute Lymphocitic Leukemia and that my spinal tap came back inconclusive so that meant I had to have another one to determine if it was in my spine or head. This also meant that if I would have to have raditaion done to my head and it also meant I had to eat so I was practically going on 24 hours of no food! Later on it turned out I did have to have the radition.It was a long hall I also had to have surgery to have a port put in so I could get my chemo and they could have my blood. I got to go come that sunday but I had to be in the clinci monday morning at 8:00am for chemo and another spinal. I had a hard time with my spinals and bone marrow even though they gave you drugs to sort of know you out and help you forget the pain, I managed to be awake for almost all of them. Let me tell my second bone marrow I had went horribly wrong and the oncologist was going in and out of my hip a few time and was getting blood everywhere in the room. Now that one really hurt.

When I started my cheomtharpy I never thought it would bring me down as bad as it did.

I will continue this in another blog. My story is really long sorry. But I have a lot to say that happened to me

1 year ago......

communityreply@lls.org — Mon, 09 Nov 2009 17:25:38 GMT

November 7, 2009. One year ago today I sat in the ER at Cardinal Glennon with my just turned 4 year old next to me as a doctor told me worse case it's leukemia.

I took Haidyn in the morning to our pediatrician because she had a cold for 3 weeks with ear infections, complained of stomach and shoulder pains, was tired and very pale. I thought it was just a virus and she was anemic. Our pediatrician sent us to Cardinal Glennon for a chest x-ray that came back great and blood work that wasn't so great. Her white count was in the 90,000s and normal is 5,000-14,500. We were to be admitted and sent to the ER.

My husband Ben was headed over when they gave me the news that it was indeed leukemia. I kept my composure with little tears in my eyes as not to break down in front of Haidyn. I didn't want to tell Ben until he got there or my mom. Tammi, my sister, knew and she told my family. They were all headed down too. Haidyn had her first IV put into her left hand. It rested on a pillow as she called it. Ben was near, so I left Haidyn with ER Nurse Doug, who was awesome, and I went to meet Ben. I walked out of the ER doors as he was walking up and all I could say was "it's worse case". I remember the look on his face and he said "they already know". We hugged and cried and then went back into the ER where our sweet girl was and he grabbed her and held her. I remember this all vividly and now exactly what we were wearing and what kind of day it was. It is forever etched in our head. Haidyn didn't know what was ahead and neither did we. All I knew is that my family fought cancer once and we will surely do it again!

We were taken up to 4North at Cardinal Glennon which was to become our home. So much was thrown at us, I couldn't even rememeber which nurses we were first introduced to. We have since come to know them all very well. Dr. Bhatla, Haidyn's oncology doctor, sat us down to talk to us about options, the type, percentage of survival, what would happen in the next few days. It was scary, not my baby! Papa and Nana arrived soon after. I think Papa was going well over 80. Joe and Tammi (7 months pregnant) were soon behind them. The life specialist hooked Haidyn up with things to do and was great with her.Macie came over to see Haidyn's room and have dinner. Her life was changing now too.

Saturday Haidyn had her first spinal. Joe, my brother-in-law, stood in with her as it was too hard for me and Ben at the time. Now it is just a routine thing. She also had a PICC line placed into her right arm. She was brave.

It was a worldwind time. So much thrown at us. My parents took Macie, our younger daughter, to stay with them at Tammi and Joe's for the week. We knew she'd get the attention that she needed. I took off work for the next 2 months at least. Ben and I stayed together by her side every night for the first week. The next week we tried to get back to a little normal with Ben going back to work and Macie going back to Ms Amy's to be with her friends. Grandpa and Grandma Louden came up to spend this week with us. They relieved me at the hostpial and spent time with Macie giving her the attention she needed. Macie is a Mommy's girl so it was hard for her not to have me. Her and Daddy bonded.

After 25 nights at the hospital we went home December 1st. On that Friday, December 5th, Haidyn had her port put in and that would become her line for all her chemo. At this time we also got the news that she had 0% cancer in her body! Joyous!

Now we are a year later, about 58 nights at the hospital, over 100s of chemos in her body, many spinal taps, so many blood checks, we are here. I worried so much about her hair falling out that first month and it took a while to do. It fell out this past June and is growing back blond again and straight. She's beautiful with or without hair!

Ben took her for her treatment last Friday and her ANC is 3080! That is the highest it has been in a year! She is thriving and doing great!

We are so thankful for our doctors, nurses, friends, family, strangers, jobs, the girls' teachers and school and everyone who has helped us through this past year. It has not been easy but we are at an awesome point now. Today we will celebrate Haidyn's 5th birthday along with her 1 year diagnosis. We have a beautiful day and big girl who is doing so well.

Thank you GOD!

Patient to Patient in words and art

communityreply@lls.org — Wed, 04 Nov 2009 22:13:06 GMT

Roel Wielinga is a graphic artist who is published internationally in the graphic novel and comic field. After 59 years of great health he was diagnosed with AML a month or so ago. As many patients know, there is a great deal of medical information out there on the disease - and very littledetailed patient to patient communication. We have many medical researchers and staffers working with patients who have cancer, but Roel and I saw an immediate need for information and support from those who know best what fears, hopes and issues newly diagnosed patients go through - the patients themselves. As a writer/photographer, I joined forces with Roel to create a photo blog and a journal of his experience. They both present examples of the unique art Roel began to produce as he explored his feelings. We hope the words and pictures will provide insights and support for other sufferers. The photos and journal can be found at these URLs:

http://www.flickr.com/photos/marknewell/

http://www.roels-story.com

We hope the contents will help, inform and inspire. This is ongoing project so lease feel free to comment and suggest. We are particularly interested in hearing what specific issues with AML other patients would like to see written about and photographed. Future segments will cover lab work and researcher interviews, as well as documenting Roel's experience.

Jim Martin

melanie@dancedifference.com — Mon, 18 May 2009 12:12:05 GMT

Jim was dx'd June '05 with AML M7. He was given about 2 wk to live. We spent the next 6 mo at MDA. He had a REALLY hard summer of '05 with about 78 blood and platelet transfusions and in the protective environnment for 47 days and a rocky time thruout. 3 rounds of chemo that only got the blasts in his marrow down to 25%.

Sept '05 he had a SCT from his sister, Sandy. At that time he had 25% blasts. Not much hope was given, but Jim did pretty well and was released Dec' 05. The next year until Sept.'05 was typical of a transplant patient (GVHD, tiredness and such). Jim was alive and we lived fairly close to normal. We had about 6 mo at home before he relapsed Nov '06. From there til he died January 6, 2007, times were tough. The leukemia returned and didn't let up.

Jim was a true warrior and someone to be admired in his fight. His faith in God and determination for the good outlook and being of service to others never waned. Would I walk this walk again if I had to do it over? You bet! My God is faithful and continues to guide me daily and Jim now enjoys his riches in Heaven.

My Journey: Hodgkins Disease

communityreply@lls.org — Mon, 21 Sep 2009 01:59:05 GMT

I was 24years old and in general good health. I hadn't been to the doctor in at least 3 years and the last time I went was for a cold. On February 4, 2009 while getting ready to leave work, I reached up and brushed my hair away from the left side of my neck. This was probably the 5th or 6th time I had done this that day but, little did I know; that moment changed my life. I felt a lump roughly the size of a quarter and some swollen/puffy stuff surrounding the lump. I immediately had this heat come over me. I didn't know what it was or what could have caused it. My initial thought was an allergic reaction to something I ate. I had a co-worker look at it and we both thought that perhaps it could be my thyroid. I drove home in complete silence replaying my food intake trying to figure out what could have caused this. I wasn't sold on the idea of it being my thyroid because it was too far over (in my opinion) to be that. My Mom can be a little over-reactive when it comes to medical issues so, I didn't tell her, my Dad or anyone else that night. Mom had always told me to go get regular check-ups. "Have your thyroid checked and get tested for diabetes, etc," she'd always say. And my standard response was, "OK Mom." My biggest mistake happened next...I got online and went to WebMD to see what this could possibly be. I saw a link for Cat Scratch Fever, something I had when I was about 6. Could this be flaring up again? I took a Benadryl and went to bed._

The next morning, there was no change in the lump. I grew even more worried and it was that moment that I heard the voice in my head, "go to the doctor." Never in the past have I had that feeling. Doctors scare me. I'm always affraid of what they'd say or what they'd find. So, I always played the "I'm going to build up my immune system" card and let my body naturally fight it. That day at work, I told more people about it and let them look/feel the lump. And everyone of them told me to go to the doctor. Against my desires, I called and got an appointment for the next day. The next step was to tell my Mom. I called her at work and told her in tears that I had found a lump in my neck and didn't know what it was but, had a doctor's appointment for tomorrow. My boss was less than thrilled with my choice to go to the doctor on a Friday, one of our busiest days at work but, at this point I didn't have a choice. I didn't know what this was.

I arrived at the doctor's office, filled out the necessary new patient paperwork and spoke to the nurse about what was going on. Before I could finish, she had circled nearly every blood test there is. They drew 5 vials of blood and I waited for the doctor. She was really nice and made me feel comfortable. She asked me if I noticed any other lumps and I said, "no" and asked if Lymphoma ran in my family, "no." She then asked that I put on a gown so she could feel my other lymph nodes. She felt around my underarms, my breasts and my groin area and no lumps (Thank God). She then ordered a chest X-ray and nothing was present there. At this point, she prescribed me Levaquin to take for 10 days for what she suspected to be a reactive lymph node to an infection somewhere in my body and just to be safe, she ordered an MRI to be done when I completed the medicine. That weekend, I couldn't sleep. I couldn't eat. I was so worried because again, I wasn't sold on the idea of it just being a reactive lymph node, mostly because I've never had a lymph node react like this. I prayed to God. I told him I couldn't handle the worry and to please take the worry away. I read a bible verse and posted it in my office and every time I looked at it, it would take the worry away. It is Philippians 4:6-7. It felt like an eternity waiting on my blood results because now, not only was I worried about the lump, Mom's constant nagging about getting stuff checked out was finally being done. What if I was diabetic? What if...What if...Philippians 4:6-7 I would recite.

The next week, blood results were back. I was told to come in so they could discuss them. I begged for them to give me the results over the phone so that I could at least know what to prepare for. I was told that my thyroid was under-active and I was severely anemic; that all they needed to do was give me prescriptions. I went in the next day. The doctor went over blood results with me. She was really concerned with why I was so anemic so, she wanted to do a blood smear. So, 5 more vials of blood were drawn and I got a prescription for Synthroid. No iron pills yet until we new what was wrong with the blood. She also wanted to know about the MRI status. Had I gotten it done yet or what? I told her I had an appointment that following Monday. She stressed to me how important that MRI was especially since the Levaquin hadn't made a significant impact on the lump. She said that I could possibly have an abscess (a walled-off infection) and longer use of antibiotics would be needed.

I got the MRI and was called in the next day for more blood work. Apparently they didn't have enough in reserve to continue the tests so I waved bye-bye to 5 more vials. The next day, I got a phone call from the doctor herself asking if I could come in as soon as possible. I asked why and she said we'd discuss it when I got there. I begged her to please tell me so that I could prepare myself (much like the results of my first blood test). She said, "only if you really want me to..?" "Please," I replied. She said the MRI didn't show this to be an abscess. She wasn't quite sure but, it was serious and not only that but the "dye" they used continued off the picture leading them to believe it wasn't just a lump in my neck but just part of a mass resting in my chest and around my heart. I broke down in tears and she remained silent. She wanted to do a needle aspiration to see if they could get a reading of benign or malignant. I called my Mom to let her know what was going on. She left work and met me at the doctor's. After the test, my doctor referred me to a Radiation Oncologist as well as an ENT incase the lump needed to be biopsied. I got an appointment for the following Wednesday. I got to the Cancer center where I met with my doctor who was named Top Doctor in Radiation Oncology for 5 years in a row. That made me feel pretty comfortable. I went through the whole list of what had gone on and he ordered a PET scan as well as a CT scan and of course, more blood work. All went fine except the awful Barium Shakes...those are so gross!

On March 3, I was called in to have an ECHO and a MUGA scan. What?? Off to the internet I went to find out what these were. Both were scans of the heart. I instantly got worried that something was wrong with my heart. The MUGA scan had to be done the next day because it requires a dose of something (ordered specifically for me). I did the ECHO and I asked the tech why they had to do this. She responded with, "they do scans to get a baseline of the heart. It's a standard test before they begin treatment." TREATMENT?? Treatment for what? "Oh," I said, "I hadn't been diagnosed with anything." That's when I knew. I met with the doctor after the ECHO where I found out that I had Hodgkins Lymphoma stage IIa. Mom and I cried. Never in a million years did I think I would have/get cancer. Till this day, I have a hard time grasping the fact. In addition to all of this, they found a cyst on my ovary about 12cm big. That's about the size of a newborn baby's head. Two days later, I had the lymph node biopsied as well as the port inserted. Yes, my doctor was so sure I had cancer he had them implant the port before the true biopsy came back. I was set to meet my actual Oncologist and begin chemo on March 12.

I never thought I'd EVER be excited to begin chemotherapy. But, I was glad to know what was wrong. I had majority of my questions answered and there was a set plan. Four cycles of AVBD and radiation. I arrived on the 12th right a noon to meet my Oncologist. Four hours later, he shows up. He read through my chart and rambled off what I had, what we were going to do and side effects I'd have. I couldn't stand the man!! His bed side manner left a lot to be desired. He was short with me. I couldn't get a question in edgewise. My blood pressure spiked and I walked out of the room in near tears. I told Mom and Dad that I wanted to go to MD Anderson (oh, I live in Houston...and why wasn't I at MD Anderson in the first place?...read on) and my Oncologist's nurse(who is a cancer survivor herself) over heard me. She pulled me aside and apologized for his behavior. She assured me everything was going to be ok; that she was the one administering the chemo. We talked longer and I felt more comfortable. She added, "plus, you'd have to wait two months or more for a doctor at MD Anderson," which I find out later is the truth. So, March 17th I began chemo but not before an apology from my Onc. Jump to today: I LOVE MY ONCOLOGIST! He's funny and truly does care. I'm his favorite patient. I know this because everyone, including him, tells me so. We joke around with each other all the time.

I was offically in Remission as of May 26, 2009. As far as side effects, I was assured I'd lose my hair. While it did thin a little, you can't even tell I had any chemo (besides the lump/mass is gone!). Speaking of mass, it was gone by the third chemo treatment. I did get sick. I didn't lose weight. I actually gained weight. I got chemo on Tuesdays and the next few days were rocky especially Fridays. Those were my worst days. I finished chemo on July 7th. On July 27th I began radiation. Four weeks and a day all through the chest and neck. Eight days on the neck alone (where the cancer was found) and just for precaution: axillas (armpits) for four weeks and a day each...EVERYDAY! I'm still currently going through radiation. I'm on the last part now...armpit 1 of 2. This part is much better than the first part of radiation. I had almost every side effect I signed off on. Loss of taste, loss of hair in radiation field, nausea, weight loss (40 pounds), tiredness, redness or sunburn-like markings. These areas are actually peeling now.

I'm 25 now (as of last Sunday) and I constantly amaze people with my spirit and how calm I've remained. If you read the statistics on this cancer, they're pretty favorable. Granted, it's still cancer and the process of killing the cancer is no different than the worst out there. But, your attitude is everything. Go in with a fighting attitude. Don't let this retched disease get the best of you. Have faith in God and know he's your tour guide through this journey because believe me, you can't do it alone. And like I always say, "I got more out of cancer than cancer ever got out of me."

Sorry this was so long but, I really wanted to share EVERYTHING I went through. Thanks for reading. Keep fighting!

-Amanda

LBJacketdance03@aol.com

My Father's Story

communityreply@lls.org — Wed, 12 Aug 2009 08:11:10 GMT

My father is a very lucky and amazing man. His story is not as serious as many others, but I think it can give hope and push people to push their doctor's for answers. My father graduated high school in 1967. He decided to go to college to miss the Vietnam draft. 4 years later, he graduated with a BS in Agriculture and 2 weeks later he received his draft card in the mail. He left his wife and 2 year old son to fight for our country. It wasn't long before he found himself walking down a trail he knew in his gut was dangerous. After expressing his concerns to his officer, they took a walk that changed his life forever. 10 minutes into the trail he found himself lying on the ground in a cloud of smoke, he thought he was died and didn't want to except it. He tried to stand up but was tackled by his "brothers." He woke up hours later in a hospital bed to the news, "You walked into a bootie trap. The mine took your left leg and we amputated your right." He didn't know how to take this life changing news, but decided to keep leaving. He returned to the states to a cheating wife and his son. After a divorce, he met my mother. They married on June 21, 1984 and gave birth to me on April 21 the following year. When I was 3, he went back to school and became a science teacher and started coaching girls softball. Within the same year he found a lump in his chest. After a biopsy, they decided to remove it. Luckily it wasn't cancer yet, but it was cancerous cells starting to form. He received radiation treatments and was cleared. He fought through the fatigue and continued to be an active father, student, and coach. 9 years later his doctor made a new discovery on his regular CT scan. He had a rapidly growing arctic-aneurysm. Once it was removed our family was able to relax once again. But it was this weird feeling, if he would have never had a cancerous lymphoid then there would have never been a CT scan and he would not be with us today. He would joke, "I must not be doing what God had planned for me." (I believe that was his way of convincing my mother he needed to go back to school.) He started graduate school later that year in Guidance and Counseling. He taught from 7:30 am to 2:30 pm, drove an hour and a half for class, drove back home and did it again until he finished two years later. My first year of high school, 9th grade, was his first year as a school counselor. Then there was another turn of events, the summer after that year he had a stroke and he almost gave up. His worst fear was to be a double amputee and paralyzed. His arms are his legs and with one barely working he would have to give up a lot of his independence. But with encouraging words from my oldest sister, his step daughter and a nurse, he decided to take the medication to stop the stroke. Luckily he was not paralyzed, but a fairly new procedure would be the only thing that could save his life or he wouldn't make the year. The doctor who wrote the book on how to perform this procedure happened to be just 30 minutes away from home. She was going to place a balloon(similar to what is placed in a heart) in his attires going to his brain to expanded them (they had shrunk due to a sever concussion Vietnam). The first to attempts were unsuccessful, but she was determined to save his life. The third attempted went perfectly. He went on and opened a private practice, along with his school job and drug court job. He works constantly and loves every minute of it.

This past year was another hard year. He found a swollen gland in his neck. His doctor gave him antibiotics thinking it was sinus related. The swelling went down, but a week after finishing his meds it was back. After that was the longest 3 months of my life. They did a biopcy, which came back inconclusive. His doctor was not satisfied and choose to remove it. When he opened him up the gland was much larger than what the CT scan showed and he was not able to remove the whole thing. They sent a peice off to the lab for testing. 2 weeks later the results were once again inconclusive. My father happens to know the lady who was doing the testing. She later told him they put that is was nothing on the results, but something kept telling her to keep looking and she felt somthing wasn't right. They sent it to a bigger hospital for them to grow it. 3 weeks later we got the news that it was type B large cell lymphoma. I was scared to death and though he didn't want to admit it he told me he was too. After bone marrow test, we recieved great news, it was still in the first stage. He said I'm ready to win this fight. After cemo came radiation and last month his PET scan came back cancer free. I know he was lucky, but my fear is that it will come back and it will win. I look at him for inspiration and remember all the amazing lessons he taught me growing up to be able to help me wipe away my fear and think about today. He always says, you make a plan for life and plan for it to change, you never know what will happen, so be the best you can be everyday, think about now, and don't worry about what might happen in the future, because only one person actually knows that.

I decided to write this cause I think his life is inspiring, because he never lets anything stop him and looks at hurtle as a guiding tool. Another reason is because I read so many things about inconclusive biopsies that were brushed off by doctors. My father would have cancer growing in his body as we speak if that would have happened to him.

My story of follicular NHL

communityreply@lls.org — Fri, 26 Jun 2009 16:39:46 GMT

Just a year ago (June 2008) I found a painless lump in my groin. Two days later I was at the doctor. He scheduled a chest x-ray and ultrasound that day. Next day I had a CT scan. Before the end of the day I was scheduled for a surgical biopsy. That was a Friday, I had the surgery Monday. Wednesday I had a pathologist’s report (follicular B-cell lymphoma). The following Monday I was seeing my oncologist and establishing a treatment plan. Total elapsed time, two weeks.

I am a lucky guy. I have a bang-up medial team, a supportive family (especially my wife, who nursed me through five ugly months of chemo), faith in God, and great friends. My cancer is in remission. I have just completed my first series of Rituxan maintenance infusions.

I am a 60-year old male. I feel better today than I did before I knew I was sick. I think the indolent cancer was sapping my strength for some time without my knowledge.

I have learned a few things. I had a painless lump on my shoulder for months. My doctor said it was a cyst, and not to worry. He was very upset when the second lump showed up, and both turned out to be cancer. Luckily, the cancer is indolent, so the delay in treatment didn’t cost me my life. The oncologist says the treatment would have been the same if I had showed up six months earlier. Lesson: don’t ignore any lumps. Get a biopsy, even if you have to pay for it yourself.

Push your medical team. Take control of your treatment. I see a distressing number of people on this board and in my life who are letting their treatment run them. Do your research, understand your disease, ask a lot of questions, and don’t be afraid to put your foot down.

Maybe I have an advantage because I’m trained as a scientist and engineer, but I discovered my oncologist and I have different definitions of the word “cure.” My oncologist is uncomfortable discussing survival statistics and prognosis uncertainties, but these are things I deal with at work every day.

I have also learned I am on the cusp of being considered “old,” and the doctors operate under the assumption that I will die of something in the next couple of decades anyway. While this has not affected my treatment, it is somewhat disconcerting to me. I still plan to live forever!

Gotta go, but I will add to this.

Pet Scans and neupogen results

communityreply@lls.org — Wed, 28 Oct 2009 02:38:45 GMT

http://http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A2=ind0910&L=hodgkins&D=1&O=D&F=P&S=&X=65E4FF37B210635C0F&Y=fmoffilmland@gmail.com&P=3711

My search for Cause & Cure

communityreply@lls.org — Sun, 25 Oct 2009 13:16:15 GMT

I'm newly diagnosed with stage 3 Follicular B cell NHL. It's only been about a month, yet in a way it feels like forever. I never enjoyed one moment of denial, past the point where I decided to have my suddenly swollen neck looked at. I allowed myself to rationalize it could be my thyroid, but I suspected it was lymphoma imediately, when I'm honest with myself about it.

This past year has been extremely difficult emotionally and even those stresses had been building and multiplying for so long, that my cancer seems inevitable, even logical, in retrospect. That's not to say my "case" doesn't seem particularly ironic, because it does! I'm young, at 54 and have always lead a healthy, natural lifestyle, with youthful energy and appearance, until the last 5 years, when circumstances and I do mean everything, really began to take a more noticible toll.

My husband and I lost the 5 year old grandson we had raised since birth last October 13th. My oncologist thinks I had probably been dealing with undetected indolent lymphoma for a "long time". But I know I just couldn't afford to get sick while being the 24/7 caregiver for my beloved, medically fragile boy. When he suddenly died, without any warning, I was so shocked and wounded with heavy grief that my immune system finally lost it's precarious balance and the lymphoma turned aggressive. There is no doubt that a large part of myself seemed to die with my little boy. No matter how improved my emotional state became, over the months since his passing, the initial, intense pain with it's undeniable, accompanying, death wishes, was plenty sufficient to accelerate any slow growing cancer lurking inside me.

That is the most condensed description of the cause, that I can come up with. I've never smoked or done any particularly hazardous work. I've been health conscious and eaten a mostly vegetarian diet, since I was 16. I've exercised and stayed slim and taken only the best supplements and always been way ahead of the curve with applying nutritional information about fresh, organic, whole and natural foods. Of course, I'm even more careful now and hoping to fight this cancer with natural alternatives.

Ironically, my most nagging emotional issues now, mainly stem from my holistic beliefs and my distrust of WHO, AMA, FDA and Big Pharma.

My husband, of almost 29 years, is on the same page and supportive of my decision to turn down chemo, although some of my family and friends have not been so convinced.

I am scheduled to undergo immuno-therapy with the mono-clonal Rituxan alone, instead, together with everything alternative and complimentary that I discern to be most synergistically important. It's a huge undertaking, but I want to take responsibility for my own health and healing. I never was the type to blindly trust any so called authority and the longer I live the more reasons I discover not to!

So, I'm seeking support and information about ALTERNATIVES!

Thanks

Heather

My Life with Leukemia continued

communityreply@lls.org — Sat, 26 Sep 2009 02:35:20 GMT

My first few day with chemotherapy I thought that I was not going to have the side effects they told me I would have. I thought I was immune to it well I was so wrong. That very first day of finishing chemo I came home and took a shower and almost passed out in the shower. The side effects hit me hard. I never felt so tired an weak in my life until that day. I layed on the floor for about a half an hour and that was the start of a very hard long struggle with the side effects of chemotherapy. Week after week I would go in and get my routine blood test to see if I could receive chemo and then when we reached February I got two weeks straight of chemotherapy and radiation at the same time. I hated those shots they had to do four shots in each leg ugh! Just thinking abou them makes my legs hurt. I got your typical nause and vomiting, tired and weak, as well as I lost my ability to walk for several months. The drug that caused this also caused me to loose the function of my thumbs so getting dressed was very difficult. I had gotten so bad that my grandma had to dress me and my fiance would bathe me. I felt so hopless with my self but I was always happy. I don't think I ever walked into my doctors office without a smile on my face. The only time I did not have a smile on my face was when I was in severe amount of pain.

I had a spinal tap cause me to go into the hospital for 4 days because my head heart so bad that I could not lift my head without getting sick. They had me on morphine ever 2 hours which evntually caused me to not be able to go to the bathroom. It was like never ending. I remeber trying to take a shower to try and make myself go and when I came out the doctor finally came in and I was like no don't go I can't go pee!! The nurse had told him I was dressed but I didn't care I couldn't go to the bathroom. When your sick you don't care who sees you naked! Well they were able to finally help me and I went home. Only to come back a month later. I came back in the second week of May of 05 it was the worst 2 weeks of my life. On of the chemo drugs was not agreeing with my body and I was regetting it severly. It had gotten so bad that I was throwing up blood and I couldn't stop! It was so bad that I could barely breath because of the throwing up was so bad. I was then given a lot of pain meds and antibotics to help me fight. I was barely coherent for half of it. It had looked as though death swarmed me. It was the scariest part of my treatment I thought that I wasn't going to come out of the hospital and that I was going to die. I knew I couldn't die I was getting married in two Months!

Yes, my finace stayed with me through everything. The first thing I asked him when we found out was honey I understand if you don't want to stay with me, and he said why would I leave you I love you. The doctors had realized that the drug they were giving had to be several reduce but they knew I also had to have it. So I kept receiving it but at a very low low dose. They also gave a really wonderful gift and that was two weeks of no treatment for my wedding day and honeymoon. On July 9, 2005 I got married to the man who was staying by myside as I was going through treament. At this time I had also gotten enough strength back in my legs to walk. They had also reduced the drug that caused me to loose my ability to walk. My wedding day was the happiest day of my life during that year. I will never forget it and we went to Disney to have the honeymoon which was so much fun. I love Disney.

Soon though it was back to routine through out the next year and half I got the shingles on my head, had my gallbladder removed, and lost my hair 3 times. I also eneded up having the heavy chemo for a year. Through everything I have been through I wouldn't tried my life with anyone. I always understood I had to have cancer for a reason. During treatment I also raised $1300 to give back and have volunteered my time as much as I can. I love to talk to everyone about what I have gone through. I feel the more you talk about what you have been through the better you can educate those who don't know about cancer and how one can survive. Although I will say I am scared that my cancer can come back but I will never let that stop me from being happy. I finished my last day of Chemo on April 27th, 2007. I also have been married to my husband for 4 years and we are now expecting our first child. I also will be finish up my college education with a bachelors degree in Accounting with a high GPA. I do though however have my side effects from the chemo that I know that I will have to live with forever. I have severe neurothapy which means I can't run and I crap up so bad that at times I do not sleep through the night and cooking can be heard. It is severly difficult to do anything during the winter. My legs can get so bad that it hurts to walk. I don't let this slow me down because that would be giving up and I never give up.

I'm trying to write a book about my life and everything I have gone through to help inspire others and I hope this little bit I have shared has given others hope that as long as you stay happy and have hope that anything you want in life you can have and conquer and get through anything. I stand by the fact that everything happens for a reason. Life is a precious gift we have been given and every day should be treated that way because we never know what can possible happen tomorrow.

Thanks so much for reading.

It all started 28 years ago

rp599mx@comcast.net — Wed, 23 Sep 2009 01:43:40 GMT

My brother was just recently diagnosed with Hodgkins. Brings back memories. Our mother died of cancer at age 44 in 1980 and I was diagnosed 28 years ago with NHL. So I want everyone to know that there is hope and this can be beat. I never thought I would have a day when I did not think about my battle with NHL. But I can honestly say there are days it never enters my mind. Too busy with work, my 2 kids. Although they are now 24 and 21 years old. Also something I never thought I would have since I was told I would be sterile after chemo. Wrong - and I am glad of that. Oh and my 11 month old grandson will keep me on my toes. I also need to mention that I suffer from what is called Kidney Reflux Disease. Something that as I understand has left me with about 1/2 of my kidney function. Oh yeah there is also my cardiomyopathy, 2 stents as a result of radiation "possibly" - they never will admit a direct link. And one last problem, I have a difibrillator. All at 49 years old. I am not complaining. I am truly a lucky person. The best care in the world saved my life and I am truly grateful for that. I wanted to post my story to let people know that there is hope and that you can live a very long time after beating this. I have no plans on going anywhere. My best advice is to have a positive attitude. There are so many joys in life to let this ruin it for you. Maintain hope, things will get better.

I need more information

mae_mrgn@yahoo.com — Mon, 21 Sep 2009 14:31:29 GMT

Im kayla, im 15 and im from illinois. My parents found out i had PV at the age of 5. It runs in my family and it can dominate in one generation. My dad, aunt, and grandpa have it so far in are family. I was just wondering if anyone could give me information about PV or if someone knows someone around my age with PV i could talk to. I just feel like im the only one but i know im not im curious how tother people deal with it. If you would please email me with any information my email is mae_mrgn@yahoo.com Thank You

Husband, Chronic B-cell lymphocetic leukemia

communityreply@lls.org — Tue, 13 Oct 2009 18:49:59 GMT

When my husbands white count did not return to normal following gall bladder surgery, the surgeon sent him to a Hematologist/Oncologist. Blood work showed 'consistent with Chronic B-cell lymphocytic leukemia'. He did not seem to concerned. He said that there are many types of leukemia and that this one usually is not treated. He is to return in January 2010 for follow up and more blood tests. His white count has been running 15,000 to 23,000. I know that is to high and that the normal is around 10,000.

When I saw our family doctor, I asked him about it. He said that most of the time, this type of leukemia is usually benign.

Now, I am no expert, but, that word..."LEUKEMIA"... jumped out at me. I am concerned about even the slightest hint of my husband having it. He has recently had a broken shoulder and surgery, gall bladder removal, hernia repair, and intestinal blockage. All of this within the past 2 years. Before that, he was perfectly healthy. And, not to get hit with a possible leukemia diognosis....frightens me.

I am wondering if anyone else in this group has dealt with this type of leukemia. If you, or someone you know, can tell me anything about it.....please, I would love to hear from you.

All the best to all of you. I hope you are doing well.

MomOf4

My story.

communityreply@lls.org — Sun, 26 Jul 2009 17:19:21 GMT

I was diagnosed in the fall of 2006, while serving in the Middle East. It all started when I noticed some strange red dots all over my arms while working out. I went to see the doctor and they didn't know what was going on, and told me to come back in 2-3 days if it did not go away. So, 2-3 days passed and the red dots were still there. Since the problem still persisted I went back to the doctor as directed and they discovered that my platelet count was at 30. The lady doctor told me that I must be sent to Germany for adequate care and further testing. In Germany, I was told that I had a condition called thrombocytopenia and that the condition may correct itself. I was later sent to my home station, which at the time was in Guam. I called my wife and told her I would be coming home a little early. When I arrived in Guam, I had become sick with flu-like symptoms and this persisted for about two weeks and I was not getting better. I was examined by a doctor at the on-base clinic and he told me that I was showing symptoms of cancer and that I would need to be sent to a specialist at the Naval Hospital. So I went to the hospital and was told that I might have Leukemia and that I would need to see an Oncologist in Hawaii. So a few days went by and my family and I were on our way to Hawaii. The first day I arrive there I was given a biopsy and they confirmed that it was in fact AML. I was shocked and did not know what to say. My wife was very sad, but showed a lot of strength for me. She held strong so that I would be positive. The doctor there told me that I could get treatment in Hawaii or be sent back to our place of residency, which was Texas. My wife wanted us to return to Texas because our families were there. Treatment started immediately when in Texas. It was about a week after the induction process that I started to have severe pain in my right toe, which turned very purple. This pain then radiated to my arm and legs and then I started to get little nodules on my body. The doctors did not know what was wrong. Later, they had discovered that I had a serious fungal infection called Fusarium. They gave me lots of antifungal medicine, but the infection spread through out my body and the doctors told me basically that was it. They tried one last drug called ARA-C, which worked, with the help of of prayers and lots of faith I came through. Along the way through this ordeal I knew that I would be alright. I kept thinking about a passage I came across in the scriptures (in my own words) it stated that this was "not unto death" but to show forth God's miracles. It has been about 3 years since all this started and I am still here. I was recently given some not so good news when on a routine appointment my doctor told me that I might have a condition called Myelodysplastic Syndrome. But I feel everything will be alright in the end. I believe with all my heart God has the power to heal if its his will. I am a member of the Church of Jesus Christ of Latter-Day Saints and thank God openly for all the blessings that he has given me and all the miracles that I have seen first hand. I wish all others out there going through cancer the best and God Bless each and everyone one of you. Always remember he is hope and he is there.

My life w/ Leukemia

playagurl418902004@yahoo.com — Tue, 27 Oct 2009 18:31:06 GMT

My name is Norma I am 19 yrs old i'm in my 2nd stage i started a week ago i go 2 my treatments 4 times a week i use 2 go once a week. I didn't understand why this had happen 2 me but i'm gettin though it.My Leukemia has to do w/ white blood cells. When I go outside I have to wear a mask b/c if someone is sick I could get what they have and go back to the hospital and trust being in the hospitla Sucked really bad. B/c I was in ICU for a week then i was in a normal room. The food it was good I order what I wanted but nothing is better then Home Cook Meals. The 1st night I was in the other hospital my older brother brought me Snoic I ate that hambuger like i never ate a hambuger before. But I really miss is work and school, I mean I was starting my Freshmen year of College and wanted to do what other college things. The doctor says that my treatment will take 4 2 and half yrs. Atleast I have freinds and family that are helping get though this b/c w/o them I don't know where i would be having this love and support that I do. i like this hospial b/c when i get my bone marrow and spinal tabs I am alseep but in the other hospital i was in I was awake and it hurt i was screaming @ the top of my lungs I scream so loud that I nurse though I feel off the bed I was still in ICU when the doctor was doin they bone marrow i had to stay still 4 an hour.

They're always our "babies" no matter how old

communityreply@lls.org — Sun, 17 May 2009 00:42:11 GMT

My son Kyle, age 27, was diagnosed with CML in August, 2008. He had been a very active, outgoing young adult. He tore a leg muscle while playing kickball last summer. The bruise took forever to heal. In July, he started having lower back pain that could not be relieved. He went for an MRI and it revealed that he had a mass next to his spine. His white cell count was 180,000+. At midnight, in the emergency room, the oncologist came in and informed us he most likely had leukemia. Further blood tests would confirm the type of leukemia. We sat there, dazed and confused. It takes awhile for news like that to sink in. We both cried until there were no tears left. He courageously began a cancer-fighting drug regimen of Gleevak, which brought him to remission in 4 months. Unfortunately, by New Years Eve, he was suffering horrible headaches and went to the emergency room. Tests revealed his body had stopped responding to the drug and he was in "blast crisis". The next step was to get a bone marrow transplant. He began taking Sprycel and was scheduled for a transplant in March, 2009. In February, 2009, leukemia cells were found in his spinal fluid. He had to have an Ommaya Resevoir put in his skull to treat the Cerebral Spinal Fluid (CSF). The transplant was on hold for now until the CSF cleared. After 4 treatments, we got 2 negative readings on CSF. He was back on the transplant list. On April 21, 2009, he got his allogenic transplant. On Day +17 he was discharged. On Day +20, he was readmitted with severe abdominal pain and fever. Tests revealed he had Veno Occlusive Disease (VOD). A liver biopsy confirmed 50% liver necrosis. He has begun receiving Defibrotide via Compassionate Use , a drug currently awaiting final FDA approval. After 2 days, his liver counts are going down and we are "cautiously optomistic". We are told his recovery is a long and slow road. As a mom, it is soooo hard to see your child suffer, no matter how old they are. God is with us every step of the way and we are relying on strength from Him to see us through.

The Life I Was Supposed To Have

communityreply@lls.org — Sat, 24 Oct 2009 02:25:56 GMT

My name is Jewell Ridley and I am a 25 year survivor of leukemia (ALL). I was diagnosed in October 1984 at Cincinnati Children's Hospital. I was 17 years old and had just begun my senior year of high school. As I browse through some of these stories, I realized how truly blessed I am. By God's grace, I barely remember anything about my treatments and the doctors and nurses basically kept me in the dark about everything. My entire treatment lasted 30 months (October 1984 - February 1987) which included chemo and radiation to my brain. Throughout my treatment, I have never relapsed. I haven't seen an oncologist since 1988 - the last year the Cincinnati Bengals were in the Superbowl! I have had some setbacks during my treatments (shingles, pneumonia) and long-term side effects (total knee replacement, diabetes, hysterectomy) but overall, I have a great life. My son graduated this June from high school and I was there to cheer him on.

This past summer I wrote and published a photp book of poetry which chronicles my 25-year survival and paid tribute to my family and friends. I have also turned some of my poetry into inspirational greeting cards to give to friends and family. I hope to join my local Team and Training group this year and complete the 2010 Flying Pig half-marathon with some of my classmates from 1985. Before this year is done, I plan on turning my poetry into short stories about 'The Life I Was Supposed To Have' which is what my life has become. In the beginning, I had so many regrets and second-guessing about my purpose in this world, not certain that I should have gone through the chemo/radiation treatments in the first place. Now I realize my journey has purpose and reason. I wouldn't be who I am if I had not gone through this illness and survived it. I wrote a poem titled 'God's Hand' which describes my first year of diagnosis and treatment. My boyfriend broke up with me at that time and I felt alone and confused. Time and perspective changes everything and I am grateful to God for giving me both.

http://stores.lulu.com/jewellridley

God's Hand

Everything was perfect, I only saw me with you

But a storm was soon coming, the magnitude of which we had no clue

I have known you since I was girl, starting to come into my own

I have known you since you were a boy, now your tall dark and strong

I thought nothing could come between us, we breathed the same air

You had my back like no other, no matter what you were always there

Every day that summer, my body slowly fell apart

Constant pain, constant tension, no explanations, no where to start

I was living in a fog of pills, pain, and prayer

No matter how many times I called, you seem to have no time to share

My weight reverted to double digits, I looked like the walking dead

My best friend came to see me, She left with fear and dread

I only found release with scalding hot water inside a tub

The pain was so incredible, couldn't even stand a hug

But nothing could compare to the pained expression on your face

When someone finally figured out what was going on with my case

The gossip mill at school said I was starving myself over you

They sent me to a therapist to see if it was true

I always knew I was dying right before everyone's eyes

But no one in my life could help me, I was certain of my demise

Because they thought that I was pregnant carrying your seed

They finally did a blood test unsure of what the results would be

Hallelujah, I have leukemia! I can put a name to this pain.

Thank God I have leukemia; Thank God I am NOT insane.

Everyone else was shell-shocked but I was happy as I could be

Although my body had failed me, my mind was still and always with me.

I knew I wasn't crazy, I knew this pain was real.

God gave me a new day, Now my body could start to heal.

I never knew the day you left me, The day you walked out that door.

Would be the last day that I knew you like you were before.

This storm cast a shadow between us, destroying everything we had

Who knew anything could come between us, I thought nothing would get that bad

You left me with a gift that I carry to this day

You taught me how to fight and let nothing stand in my way

You made me a warrior princess- delicate, powerful and strong

You taught me to prepare for any situation that could possibly go wrong

I learned so much from you, you were always my best friend

You were also my big brother, closer to me than any kin

As I continue to come into my own, I have become painfully aware

That in deed you owed me nothing, not even your time to share

This was my fight from the beginning; This fight was always in God's plan

No touch from any man could heal me, Only the touch of God's hand.

GI Track Health

designfab@earthlink.net — Tue, 11 Aug 2009 21:08:37 GMT

I wish to contribute once again on the research which I have been looking into, considering that I am now approved for a Mini Allo transplant and would like to survive the procedure.

Without getting too overthetop with technical stuff here it goes:

After chemo therapy the mucus membrane is sloughed off of the GI tract, this allows bad bacteria to enter the system, and for this reason strong antibiotics and anti viral meds are prescribed as a prophylactic to prevent this. However the side effects of such meds have their own deleterious effects.

I have opted not to take these meds but have cultured Lactobacillus Rasmosus GG by purchasing the Product "Culturelle" a human pro-biotic available at Wal Mart. Using simple methods of making yogurt I have been able to use the product as a starter and multiply the culture substantially. After having the chemo my GI tract was inflamed and one could feel this as a nauseating and irritated area in the GI. I took this yogurt and in 24 hours my gut was at peace, bowel movement has returned to normal (it was not normal directly after the chemo).

Note that if you follow the Dr. prescription for anti bacterial meds, this yogurt method will not work, and keep in mind that the prescription is prophylactic it is administered due to the fact the the mucus membrane is stripped from your GI. What we are doing here is re-establishing the friendly human bacteria thus protecting the GI from infection.

I now take 6 oz of the yogurt 2 X Daily with no side effects.

Check out;

http://www.clltopics.org/BMT/GVHD.htm

Be your own advocate. Why does the medical profession term their discipline as "Practicing Medicine" (that is not to denigrate the honorable profession) however a holistic approach eliminates the fragmentation of specialists.

My Fight....

crustyclown2008@hotmail.com — Fri, 18 Sep 2009 06:34:58 GMT

Well lets see this be the first time i actually tell my full story so srry if its rough. I guess i start from the beginning. well i was 11 and just a boy when i was feeling abnormal chest pains i didnt have a family i was in CPS care at the time and been in sence i was 5. well for a whole year i never said anything about them to scared cuz the whole group home living situation i seen kids come and go get made fun of for different things the most common was being different or having some kind of illness. so i lived for a year wat i thought was well and happy taking tylenol for my chest pain tell a month i hit 13 came. did the chest pain become to great and couldnt breath not even tylenol helped i was visiting my biological family when the last attack i experanced happened made my cousin cry i can never forget his face asking if i was ok crying saying dnt die cuz i couldnt breath. well near my entry to the hospital they had a hard time with the paper work getting me in but they fought it and i was in now just came the waiting game i hated the smell of rubbing achole but for years became used to it i was scared no family but then i got a phone call from my aunt the one who took me to the hospital my grandfather was flying out he stayed with me lost his job cuz of me from wat i heard i hit bottom it was a tough almost year visit in there i was in and out of things like crazy every treatment happened so fast when i was well enough to find out wat happend my grandfather told me i had lukiemia. then the day i hated CPS they banned my grandmother from seeing me when thats all i wanted little did they know we kept in contact through messages hidden under pizza she bought for me from the outside i used to refer to the hospiatal as a prison i became very depressed gave up after my bday came along couldnt even celebrate it thats when my family feel apart seems like they always fought over me even tell this day they do well after all my chemo treatments and such i got out sure enough went back into CPS care my own family didnt want me for the first 3 years after chemo i tried sucide thinking everything would go back to normal if i was gone my family would actually care over the years i excepted it and now im 22 and here i am still regreating things u know no much for aq social person in the community dnt get out much i like my room u could say it keeps me mellow dnt get me wrong i do get out but not much my gf trys to walk this path with me but she sometimes makes a stop saying i wont let u go if it comes back knowing i wont have the energby to go through it again i rather hope i wont have to but theres that part always wondering is today my lotto card is going to be cashed in and my life over i have a lovly step daughter shes 1 u know talking about marrage but i dnt think its worth it sometimes know i could die and leave her alone.

srry if it seems like ur reading a book but my lifes been complicated and its the best way i know how to espress my fight for servival without crying

-chris-

thx for listening crustyclown2008@hotmail.com

Hi

karin.k.ross@gmail.com — Thu, 22 Oct 2009 15:20:57 GMT

First of all, let me give my prayers for everyone. About 4 years ago, I had a physical with a CBC. My WBC came back high. They ran all the tests, and did a bone marrow Bx, which came back ok. I was told I had *questionable* cells. This week, I had a CBC ran on me, and my WBC is now at 18.5. A year ago, it was at 14.4. My neutrophils are at 79% which is 5 points high, and my lymphocytes are low at 16% and considered low by 4 points. The docs here don't seem concerned that my WBC have increased over 7 points in 4 years. And I am not sure how concerned I should be either.

Can someone give me their thoughts?

Thanks

Karin

Husband a survivor

communityreply@lls.org — Wed, 05 Aug 2009 18:16:16 GMT

This is about a miracle my husband. Ronnie was diagnosed 3 years ago with aml and cml in blast crisis.

He spent 35 days the first time in hospital,receiving his chemo treatments. He went home taking the drug

Gleevec. It kept him in blood remission for 1 year. He returned to hospital in blast crisis, stayed 31 days.

They gave him, what they referred to as the big guns. The chemo was smurf blue in color. I was told he

would probably not make it. He has been on sprycel chemo pill for 780 days. We both know God has been

with him thru all of this and continues to walk with him daily. Ronnie is 66 and was not a transplant candidate.

He works in the yard, and also enjoys fishing. Most of all he has been able to enjoy his 3 grown children and

6 grandchildren.I hope this story will give someone else some encouragement.

God bless all cancer victims and their family

Ali

My Story...

communityreply@lls.org — Wed, 13 May 2009 12:17:13 GMT

Diagnosed with Non-hodgkins, large B-cell lymphoma last December...right before the holidays. In fact, I got the byopsy results the day before Christmas eve...Oh boy, what a holiday we had. Truthfully, the whole holiday season is a blur to me.

Just completed 6 cycles of R-CHOP in April. I feel like I was lucky with the side effects. I smoked pot to help with my nausea and appetite issues. It worked like a charm...like I flicked a switch and the nausea waves were gone...and I had no trouble eating normally.

This may not be the ticket for everyone, but it worked for me.

I had bad heartburn the weeks I had treatment, so my doctor presribed an antacid that helped with that. Didn't really loose ALL of my hair, as one of the infusion nurses said I would. I lost hair on some parts of my body...that was kind of creepy I thought...but for the most part the hair on my head and face remained intact.

The other side effect I've had is the numbing feeling in my fingertips...which is more of an annoyance than anything else.

Now I'm waiting to get a PET scan to see how the treatments worked. I feel pretty good though. Still fighting the fatigue a little, but it's getting better every day.

My wife is nervous about the PET scan, as you can imagine...but I am optimistic.

At the risk of getting too ''preachy", I think it's extremely important to keep a positive attitude through all of this. I know it's hard sometimes, but I feel like there's no sense adding a negative, "oh woe is me" attitude to my situtation.

You know, "the beat goes on", and I'm not ready to stop dancing yet.

Subcutaneous paniculitis-like T-Cell Lymphoma or Gamma-Delta T-Cell Lymphoma

daisymaelw@aol.com — Sat, 14 Nov 2009 15:52:14 GMT

Hi! I am still wating for a final diagnosis on what particular lymphoma I have....what I know through research is, these two types are very rare and aggressive. I have been followed by my hematologist since August and I recently had a 2nd opinion where more tests were done and I follow-up with him next week to see what he thinks. I also have a consultation set up at the Sylvester Cancer Center in Miami on Tuesday.

I am hoping to find someone who has been in my shoes (or knows of someone who has) so that I can get some answers and support!

Thanking you in advance~

Jodi

CML

bassam_biochemist@hotmail.com — Wed, 30 Sep 2009 15:38:45 GMT

I was diagnosed having CML in 28/7/09

I am taking Gleevec since 19/8/09

I had rash on my knees 2 days ago

Is this normal?

Thank you

Just my Story of Hodgkin's Lymphoma

z2awyo@yahoo.com — Wed, 15 Jul 2009 03:41:51 GMT

HI All

I am 60 years young. I was DXe'd Dec. 08 with Hodgkin's Lymphoma stage4b with bone marrow involvement. I visited my GP because of loss of weight & with a bunch of tests He had me Dxed within 3 weeks, I started 6 Cycles of ABVD chemotheripy (12 treatments) between Christmas & New Year I finished my last treatment on June 4. I had a PET scan on 14 June with no uptakes at all, I checked into University of Colorado Cancer center last night for a bone marrow transplant, which was in my plan of treatment since the beginning. Because of my age & the bone marrow involvement. I am now at day -6. I will be making updates on the living with Hodgkin's Lymphoma page.

Mike

Collector of weird side effects

Another Lymphoma Story :)

srmatalon@hotmail.com — Sun, 13 Sep 2009 03:53:58 GMT

Hey Everyone,

I was diagnosed with HL in March 2008, for a few weeks I had a couph that I could not get rid of, and this might sound strange, but my legs itched really really badly, and no doctor could tell me what was wrong. I decided to go to the doctor, they did a chest x-ray and saw a huge cloud over the right side of my chest. I knew then that something wasnt right, the Doctor at the clinic sent me to the emergency room for a Catscan. My boyfriend Martin drove me to the hospital, I did the Catscan, the doctor walked into the room and told me that it looked like cancer. I started to cry, Martin looked over and kept telling me that everything would be alright. A few minutes later I had calmed down and it was his turn to have a cry, so I started telling him that it would be ok, that everything was going to be alright.

Within the next two weeks, I had a biopsy, A port implanted in my chest, and a bone marrow test (which by far was worse than any chemo or radiation I went through). My amazing oncologist told me that I had HL stage 3, and I started chemo, 6 cycles ABVD.... The doctor and nurses all told me to prepare that I would lose my hair within the first 2 cycles, I was determined not to lose my hair.... And although it did thin some, by the end of chemo no one could tell that something was wrong with me. I didnt lose my appetite in fact I actually put on weight while going through chemo, I never felt sick to my stomach... I was very tired, and got annoyed pretty easy but that was about it. I did my chemo and radiation treatments at Baptist Hospital in Miami, and I have no complaints... my oncologist IS AMAZING and so are the nurses, I have kept in contact with some of them and they were a joy to be around.

I finished chemo on September 4th 2008, and radiation 3 weeks later. My petscan in March 2009 was clear (thank god). I follow up this wednesday with a catscan to make sure that everything is still good, and I will see my oncologist on Friday for the results. I wish I could have a Petscan but unfortunately my insurance company wont approve one. My nerves are starting to flutter once again as this time draws near, I hope and pray that everything will be alright that the doctor will look at me, like he did in March and tell me "see ya in 6 months"....

Im always here to listen to those fighting HL, please feel free to send me an email srmatalon@hotmail.com. remember things arent always as bad as they seem. Be strong, Smile.... and you will be just fine....

Sam

Recently touched by cancer

communityreply@lls.org — Sun, 21 Jun 2009 07:34:03 GMT

I have recently found out that a very close friend of mine has brain and lung cancer. My friend is only 46 years old and has 2 duaghters as well as 2 young grandchildren. I was quite blown away by this news. It does not look good for her. I am very saddened that her children and grandchildren might lose her. They are all very close and love each other very much. I am not sure why I am sharing this, but I feel that I need to get it off my chest. I have stayed brave for her family. I guess I would like to find ways that I can contribute. I look forward to meeting people and hearing their stories. I know that almost everyone may be touched by cancer in someone they know or love. It is truly a horrible thing.

Coming Home One Last Time

steve.bunten@hp.com — Mon, 27 Apr 2009 20:14:48 GMT

I wrote the entry below on my wife's carepage (http://www.carepages.com/carepages/LisaBunten) regarding her AML. She has made the most valiant effort to defeat this evil disease for the last 18 months. I have posted on the old LLS BB but haven't been on for a couple of months.

---------

All our dear friends and loved ones, we have been through one long and tough journey but as with all journeys, they do come to an end. Lisa’s journey is destined to end way too soon.

On Saturday we received news on the biopsy. It showed that the leukemia has claimed another innocent victim. The bone marrow was filled with leukemic cells and the doctor told us that there were no more options that could be tried medically. They arranged for Hospice care for us at home and so that afternoon we headed north for the last time. There would be no more chemo and no more blood transfusions.

Sunday morning a nurse from Hospice came to the house to explain what would happen and what all services they could provide. Around noon-time Lisa’s sons Spencer and Nick met at the house along with their dad Jerry and his wife Chris. A social worker from Hospice also attended and we explained to the boys what the results were and what would happen next. Nick asked how much longer his mom would be with us—we said that this is impossible to know but that unfortunately it won’t be long, perhaps three weeks. There can be fewer tasks in the world more difficult than telling your own children of your imminent demise and Lisa did it with dignity and love.

At this point my main concern is to keep Lisa both comfortable (pain-free) and meet her needs. I want her to be able to spend as much time as possible with the kids as well as with me. I know that many of her dear friends will want to see her but at this time we need to hold off on that. She is very tired and the emotional strain has had its toll on her. If her strength comes back she would love to see friends but any visit must be short.

Lisa had met with her doctor on Friday evening (we had been told Friday afternoon that the leukemia was back due to her blood workup and overall condition although we didn’t know how serious it was). She told him she was sorry that she wasn’t able to beat this thing. He told her that he was so sorry that he couldn’t help her beat it and that she was the strongest person he had ever worked with! I can attest to that—no way could I have suffered with all that she did and keep such a positive attitude throughout!

Lisa’s sisters will be out soon to spend some time with her. As you all know this has been a tough year for all of them, first losing their mom last September and now facing this. But you could never find a better and more loving set of sisters in the world! But then they had a teacher and role-model in their mother—I could not have married into a better family if I had looked for decades.

Please keep Lisa in your prayers that she is able to make it through this last part of her journey with minimal pain and can spend some quality time with those she loves dearest and who love her. And pray for her children that they can find the strength to make it through this and move forward.

You can call me at 970-227-1328 or email me at steve.bunten@hp.com

With love to all,
Lisa and Steve

Newbie

levica@neo.tamu.edu — Tue, 09 Jun 2009 19:53:51 GMT

I've been looking through the forums for a bit and thought I would post my story. I'm a graduate student at Texas A&M. My husband was diagnosed in December 2007 with Hodgkins Lymphoma. He had had a lump show up on his shoulder a few months prior, but didn't hink much of it till it started to get a lot larger. We saw a doctor about it thinking it might be a cyst or something minor, but he saw it and sent us to a surgeon to have it biopsied. The surgeon ran a chest xray, then did a outpatient biopsy the next day. We got the results a few days later. Cancer. Not cool. we were sent to a local oncologist who told us that David (my husband) had a good chance of beating the cancer as Hodgkins is one of the most treatable cancers. So David had the usual 6 months ABVD, then 6 1/2 weeks of radiation. He finished in August 2008. Then this January, he had his check-up PET and CT scans, and the tests showed that he relapsed (though my husband wonders if it was ever in full remission to begin with). So we were sent to MD Anderson is Houston. Thankfully they are only 2 hours away. We met with an oncologist there and he told us the next step was to put it in remission then do a SCT. The usual chemo to try for remission was ICE. We also met with one of the SCT doctors. So in February Dave got a port put in (he wishes he had one for ABVD ) and the next weeks started ICE. It was way worse on him than the ABVD was. He did 2 cycles, then they ran the test again. The tests showed the ICE hadn't done anything other than keep it from growing. So his doctor decided to try a newer treatment next, GND. He did 2 cycles, and we got the results back a couple weeks ago, and he's in remission yea! The doctors told us when we got the results that because it took so much to put the cancer in remission that they recommended that he do the allo SCT instead of the auto SCT (which we had originally planned on doing) because it had a higher chance of keeping him in remission. So we agreed to go with their recomendation. So they had him take one more cycle of GND, which he finished this week. Now we are waiting on a donor match as his brother was not a match. Thankfully the unrelated donor coordinator told us that they already had several potential matches in their registry, so hopefully it won't be too long before they find one. We're really hoping that this keeps it in remission.

Happy and Healthy!

cakefan2002@yahoo.com — Mon, 16 Feb 2009 19:14:41 GMT

My name is Rebecca Morrow and I was diagnosed with ALL in 1996 at age 12. I went through 2.5 years of chemo and radiation and lost my hair twice. The experience really made me stronger and helped me see just how important it is to live your life the way you want to live it. I love to help others and make a difference in the lives of those around me. Now I am 25 years old and my husband and I are participating in the TNT Marathon in San Diego in May 2009. We are both very passionate about finding a cure and we are so lucky to be able to be involved in such an amazing organization! Thank you all for you support! Check out a video on you tube called "The 7 Day Cure" to learn about an amazing camp for cancer patients I used to attend. I made the documentary while I was in college to use for fundraisers! Enjoy!

This is my story.............

communityreply@lls.org — Thu, 13 Aug 2009 16:56:19 GMT

My story.........

I was diagnosed with Stage 3 Hodgkins Lymphoma at 36yrs old. It began with itching that "doctors" would diagnose as leprosy and candida! I spent many symptom riddled years with this before being diagnosed because of a prominent lump in my neck. Turns out I had a massive tumor the size of an eggplant in my chest along with tumors in my spleen, abdomen, underarm, neck and chest.

I was THRILLED to finally have a label for my ailement. I stayed very positive just wanting to get rid of this cancer and get on with life! I had 7 months of chemo. My husband and I had started to try having children just before I was diagnosed.

I returned to work part time, when 9 months later, I was hit by a truck. I was a pedestrian walking across the street, across from my work, when a truck struck me. I thought - I survived cancer to get hit by a truck??!! And now the baby plan is put on hold again.

I continue to struggle with soft tissue damage. Work is less than understanding and they can't figure out why its taking so long for me to recover. Big mystery I guess. The stress of it all gave me shingles and then we all thought I was having a reocurrence of Hodgkins. Went for an MRI, CT and PET scan. It looks like it is not, but I have another appt in Oct for more testing.

I am 4 years in remission.

I have a wonderful husband who has stood by me through every "event" and I still long for some semblance of peace, health and perhaps finally a baby in our lives.

Thanks for listening.

Missing my Grandmom...

communityreply@lls.org — Fri, 11 Sep 2009 18:32:54 GMT

Eleven years ago today, I lost my Grandmom to Lymphoma. It feels like it was only yesterday she left us... the pain keeps getting worse & the more I think about everything the more I miss her. I miss not seeing her beautiful face and not hearing her soft voice. I remember when she got sick like it was yesterday! She found out she had Lymphoma when she was 68 and slowly but shortly everything came crashing down right before my eyes. I was a freshman in highschool (14 yrs old), so I was very confused and did not understand why this was happening to her. I still don't have answers! All of family especially my parents took her to her doctors appointments/ made her feel comfortable/ and stood by her side 100%. Throughout her battle, she started to lose her vision but then she would slowly get some back, didn't really have an appetite, and lost a lot of weight. From there on I knew we were losing her. I always kept positive, but at the same time I knew deep down inside I wouldn't be able to free her from her pain or make her suffering stop. To see someone suffer like that broke my heart and words cant describe how that felt. Feeling helpless is the worst feeling ever & I wish I could of switched places with her. Cancer spread rapidly and on 9-11-98 she took her last breathe. She died in the hospital with her loved ones around her... my mother was holding her hands & told her "mom go into the light" my grandmom smiled and slowly went into Heaven, leaving behind a tear rolling down her face. This is very difficult for me to discuss, but since her passing my family, friends and I have participated in the Light the Night Walk. This is an amazing event and I am so thankful I was able to be a part of it. We raised a lot of money and helped other patients live longer lives. This experience was something I will never forget because while walking in memory of her, I was also walking with hundreds of survivors. Hopefully one day soon there will be a cure for every type of cancer and our angels can stay here with us longer than time has let them. Grandmom ReRe you will forever be in our hearts & not a day goes by that your not in my thoughts! Ill see you again "One Sweet Day". I love you always & forever!

Fallon

Our Story! Never Ever Give Up!

communityreply@lls.org — Fri, 15 May 2009 03:08:19 GMT

Around Thanksgiving in 2007, my then 13 year old son Jacob began complaining about his shoulder hurting. We had tried to move our large basketball hoop a few days before, so we didn’t think much about it, maybe he had just pulled a muscle. A few days later his shoulder was hurting more than ever, so I took him to our pediatrician. The doctor examined Jake and came to the same conclusion, it was just a sore shoulder and recommended over the counter pain medication and some rest. Jake’s shoulder improved, but then a week or two later, the pain returned…but this time it was in the other shoulder. I knew then something wasn’t right. After a few more visits and tests, thinking it might be arthritis or a septic shoulder, the final visit to the pediatrician was on December 17th, 2007. The doctor ordered a quick CBC blood test while we were in the office. Jake and I waited in the room, not knowing that these were are last few moments of life as we knew it. Soon the doctor returned, she said that his blood counts were not good and that she would like us to go to go home, pack some things and wait for her call, she was going to admit us to Shands at UF. Jake and I left and went home to pack and called everyone to tell them what was going on. The doctor called an hour later and told us to go Shands, we got to the room and had a very sleepless night. The next day, the doctors took Jake to the OR to have a Bone Marrow test…it was a tough moment for me, Jake had never been in the hospital or had any surgery so I was beside myself. Later that night, December 18th, 2007, the doctors retuned to our room with the results. “Jake has Leukemia” they said, our entire family was in the room with us, you could have heard a pin drop. They were going to start Jake on Chemo right away and we had to decide what protocol we were going to use. This is the point where the Leukemia and Lymphoma Society came into our lives. There were huge decisions to be made and the Society provided materials to educate us very quickly on what it meant to have Leukemia, what the blood tests meant and a wonderful web site that I searched all evening. We made our decisions, but LLS support was only beginning. We were sent books by the LLS on Leukemia, not only about the disease, but how our life was going to change as a result of Jake’s blood cancer. Fortunately, our family has excellent insurance so we did not need financial support, but for many of our friends LLS is instrumental in helping them get the treatment they need. During the first year Jake had a port placed in his chest, hundreds of appointments and dozens of spinal taps. His sense of humor through it all carried us. I never heard Jake complain and he is an inspiration to what it means to be a fighter and a survivor. I am the proudest mother in the world, knowing that Jake is my brave son and I cannot wait to see what special future awaits him with all he has learned from this experience. It has been one year since Jake’s diagnosis, we participated in our first Light the Night Walk and with the help of family and friends we raised over $2000. I have been able to participate in conference calls with the world leading researchers in Leukemia through the LLS. Jake is now at a point where he can return to school from treatment and the LLS is once again there to support us by setting up and educational meeting at Jake’s school through the Trish Greene Back to School Program. I cannot say enough about the LLS’s optimism and support, now it is our opportunity to give back! Thank you LLS!

Rolling the stone

communityreply@lls.org — Sat, 06 Jun 2009 09:00:04 GMT

Hello everybody

I was reading the other posts and wanted to share my story with you too.

I was diagnosed with AML M2 in September 2008. But before I got diagnosed, I have to say I went through a very, very bad times. At first, somewhere around the beginning of May, I started feeling tired and didn't have too much strength, but I thought it was since I was staying up late studying and not eating well. That continued till mid July, when I started feeling worse and I had horrible nausea all the time, but in summertime in my country stomach viruses are not uncommon, so then I thought it was a stomach virus and didn't even think about going to the doctor. In August I was visiting my sister for a month. The first week it was ok, but the next three weeks it was horrible. I couldn't get out of bed, couldn't walk almost at all, I couldn't eat or drink anything without vomiting, I couldn't even take a bath without feeling as tired as I've ran for hours. So, I got back from the visit, and the very next day I went to have an endoscopy (not a pleasant feeling without anesthesia). While I was waiting for the endoscope to be sterilised, the doctor said that we should withdraw some blood, just in case. At the time I had only 2 bruises, while I was at my sister's, her dog wanted to play and was jumping all over me, so I paid no attention at all at the bruises, and an illness as leukemia didn't even cross my mind. The day after the endoscopy, the doctor called my mom, asking her to bring me to the hospital immediately because the blood counts were very odd and made no sense at all. At first they thought I had hemolytic anemia combined with thrombocytopenia, my wbc was not very high. But then they decided to do a sternal puncture. The sternal puncture was clear, I had AML M2, and I was admitted in the hospital the very next day. The bone marrow biopsy was a horrible experience. It was done with local anesthesia (need I say it's almost worthless), they couldn't get in the bone (I have strong bones, lucky me my parents gave me enough milk when I was a kid ) so they had to stick the needle 4 times before they got in the bone. And then it all started. I was in the hospital for exactly 3 weeks for the induction therapy. I'm in remission ever since (that was in October 2008). I had 3 more treatments after the induction therapy. The second one was the "big consolidation", the third one was a maintenance dose, and the fourth one was so they could collect my cells for an autotransplant. Now I'm in hospital for the transplant.

I have to admit, I don't know whether it's my way of handling things, but it's as if everything that's happening is not happening to me, but to someone else, and I'm just a "silent viewer". It's hard to cope with the fact that you have cancer, that you are fighting for your life, so I've decided not to even think about it. I've set my mind on winning this fight! I'm just fighting it without looking back, without thinking how hard it is and continuing my life, not as if nothing's happened (who could possibly do that), but as if this whole thing has happened for a reason. A reason I can not understand at this time, or perhaps I'll never understand, but I could never question God's ways. So, if anyone who's just started the fight is reading this, I'd like to say to you - never, ever give up! Life's worth fighting!

I know the transplant process is a huge step and it won't be easy, but it's something I have to go through. My strength and my will are not at its best right now, I've spent so much time fighting and pushing and pulling and I'm getting tired, but one thing is for sure, I'm not giving up!

Recommended Events?

arth@san.rr.com — Sat, 27 Jun 2009 17:22:37 GMT

Greetings to all!

My wife passed away 3 weeks ago today from Non Hodgkins Lymphoma. I am a runner and I have previously

done the The San Diego Rock N Roll Marathon and the AFC half marathon also here in San Diego.

I view TNT as a natural way to help others, honor my wifes memory as well as being good therapy for me. As a caretaker my running

was limited and I have just started getting back into it this past week. I am goal oriented ....wanting to do something to honor

my wife as soon as possible I entered the Kauai half marathon on Sept 6th. I soon found out that no one else from my area is

traveling to that event. My question is what events should I target? I am planning on half marathons for this calendar year

and marathons for 2010. Your advice is welcome and appreciated....

Best Regards,

Art

My Mother's Story

mattfpittpa@yahoo.com — Wed, 15 Apr 2009 00:43:35 GMT

Well first I'm new the forums and just wanted to get my story out of how I'm connected to leukemia. My mother, in July of 2007, was diagnosed with AML which came as a huge blow to the family. Even though it was crushing news for everyone we knew that my mom was a fighter and she wasn't going to give up. She began her chemo and within the next month she went into remission and was able to leave the hospital for a well deserved break. Then after a little while off she received a stem cell transplant in September after the doctors searched my entire family and found that my mom's sister was a match. The stem cells took and she began improving with the next upcoming months. While there were some issues here or there nothing was a major concern. In October of that year my dad's side of the family who lives in the area held a Monte Carlo night in honor of my mother. It was a great thing to see so many people who were old families friends come together for us and it also raised a lot of money. Everything was getting back to normal and we were going out and doing things like my mother and I had always done. It was the best feeling in life to know that she was getting better and it seemed that everything was going to be alright.

This lasted until August of 2008 when my mother went in for her annual check-up and found that she had relapsed. It was a year and a month to the date of the original diagnosis that she went back into the hospital. So they started her on chemo and she went back into remission a few weeks later. However, she relapsed again, so the doctors decided to try radiation and chemo and once again she went into remission. Once again though they told us the word - relapse. Finally in October the doctors told us that it was the last time they could give her chemo because if they gave her anymore after that the medicine would kill her. The last chemo worked, at first, and then the once again - relapse. Obviously the doctors couldn't do anything else and we all knew what was going to happen.

The doctors told my father and mother in the afternoon on the Monday before Thanksgiving. I found out as I left school and called my father for a ride. I could tell that something was wrong because he was crying over the phone. I knew that whatever it was, it wasn't going to be good. My aunt then came and picked me up from my house to take me to the hospital. We got to the hospital and my dad looked at me and said, "They're sending mom home, and he paused, do you know what that means?" I said that I knew exactly what it meant. It was at this time that a group of nurses walked in. Some of them had worked earlier in the day, some were just getting off their shifts, and others didn't even work that day at all. However, they all came into the room together to say goodbye to my mom. They referred to her as the "Angel of 7 West" because of her kind and loving attitude and how she always was thinking of others before herself. After the nurses said their goodbyes my mother's original doctor, Dr. Raptis, came in to talk to us. He shook my two aunt's hands, then mine, then my father's, and then he gave my mother a hug. He said that he would miss her very much and he was sorry that it didn't work out. It was one of the most sad, yet memorable moments in my life. Mainly because my mother smiled and acted as if nothing was going wrong. She was braver than anyone I have ever known.

The next day my mom came home late in the day after we had gotten the house ready. It was somewhat funny to see such a large family crammed into a very small house. It was great for my mom to finally be home again after not being there for 4 months. You could also tell that she was happier and we knew she was ready. Her sisters had all traveled in from their different spots, Florida, Virginia, and Colorado. It was great to have the whole family together, especially for Thanksgiving. Even though we couldn't do much we kept the spirits up and made sure to keep laughing and stay positive. That week was the best week of my life and it will mostly likely stay that way. However, it wasn't to last. The next coupld of days after Thanksgiving my mother's condition worsened rapidly. We decided on Tuesday night that we would move her into the hospice because it was becoming to hard for us to maintain her health at home. So the ambulance came and picked my mother up and moved her to the hospice where she could be taken care of better. Some family went to the hospice in order to make sure everything was ok. After being there for a few hours I was getting ready to leave with my aunts. I said my goodbye to my mother as she lay sleeping. A few hours later after I returned home and went to sleep I was woken up by a knock on the door. It was my dad, he told me that my mom had passed away an hour or so before. It was at first not hard because I knew that it was going to happen. The next two days were really hard though when I had seen people that I had not seen in years come to pay their respects. I will never forget those people who were there for us in our time of need.

My mother was a brilliant woman who inspired others and kept everyone's spirits up. Everyone who knew my mother will miss her deeply. I know that she will forever be missed and loved. I know also that even though the story did not end the way we wished that it will not be the same for everyone else. My prayers are with each and every person who have a blood disease or anyone who has a loved one with blood disease. It is hard to hope for something when it seems that it isn't there, but do not give up and do not give in because it is possible to win. My hope is that one day we will look at a blood disease and be able to say, "No sweat." I know that it may be a long way off, but I do not intend to give up and I hope that neither will you. God bless you and keep you safe.

Message was edited by: Matt Frankwitt

New Runner Here

camarks@comcast.net — Thu, 30 Jul 2009 16:14:53 GMT

This is what I had posted on my website as the first blog entry:

A Small Introduction

Welcome to my Team In Training home page.

Please bookmark this blog and visit often. Feel free to send the link to all your family and friends as well and ask them to contribute to a great cause.

Listen, I'm not an athlete by any means but listen to my story - I'll try to keep it short.

On June 27, 2009 I ran my first 5K and smoked my last cigarette. Not only am I not an athlete but I never considered myself an "outdoorsy" sort of gal either.

A life enthusiast girlfriend of mine asked me on June 26, 2009 if I wanted to join her on a 5K race the following day. My first reaction was an emphatic, "Um...no thank you." Then I thought on it for a few minutes and remembered that I was starting to try to do things differently in my life . I decided to step outside of my comfort zone. I thought what better way to jump start this new way of thinking and living than to go run a 5K! Well, I knew I wasn't going to be able to run the whole thing but I knew I could walk it at least! So why not! I emailed her back and told her I was in - it was the beginning of a new chapter of my life. I had no idea how a 5K race would change my life.

This evening, on July 18th, 2009, and not even a month after my first 5K, I'm going to run my THIRD 5K . I've been running just about every single day, sometimes twice a day. My legs hurt but I don't let that bother me, I know my leg pain will pass in time. I have purchased all the running attire and a new pair of real running shoes!

While purchasing my new shoes at Fleet Feet Huntsville, I met Cindy Walton (Birmingham LLS rep.) and some other runners meeting there that evening for The Team In Training kick-off. They moved me with their inspirational stories and I felt like I had discovered yet another group of like-minded people that I could relate to, so without any real running experience, I committed to running a half marathon and to fundraise for $1,800.00.

I'm still SMOKE FREE. It wasn't even that hard to quit. I reckon I replaced one addiction/obsession with another; stop smoking and start running.

My thinking has changed drastically and I'm loving every minute of this new found spiritual growth - all because I decided to do something different one day by saying yes to a 5k race.

Now I am signed up for a great cause and I hope you will help me along the way.

Jenna...my inspiration

communityreply@lls.org — Sun, 12 Apr 2009 07:28:09 GMT

In Nov. of 2004, myself, and my 2 daughters, Jenna and Megan came down with a nasty cold. I phoned the Pediatrician who said that there was a virus going around which included a cough. I should expect this cough to last a few weeks. After a bit, we all got rid of the cough, but in December, Jenna's returned. I didn't think much of it at the time. After another week, Jenna seemed to be pale, and her cough had returned. She was also tired, but stated that it was because she was coughing in the night and not sleeping well. After a few days of just not getting any better, I took her to the Pediatrician who examined her and told me that she had pneumonia. She was given an antibiotic and we were sent on our way. Right before we were leaving, I had started to discuss about when Jenna had her tonsils out. The doctor was not her normal Pediatrician, as we were an emergency that day. He suggested that we order some blood tests to be on the safe side, and also ordered a test for Von Willebrands Disease. This is a disease where your blood does not clot quickly. We went downstairs and had her blood drawn. The doctor had said that she could return to school that day, as she was not running a fever, she just had a cough. So off she went.

That evening, we got comfy on the couch and the phone rang at exactly 8:13pm. It was the doctor saying that he had received Jenna's blood test back, and that she was extremely anemic. He rattled off some numbers to which I had no idea what he was talking about. I finally came out and asked him "What are you saying?" to which he said the words that will ring in my ears forever.... "You need to go to Children's Hospital immediately..... I think your daughter has Leukemia" After a hysterical call to my husband at work, we loaded Jenna in the car and headed to the hospital. Withing 1/2 hour of being there, it was confirmed that Jenna did have Leukemia. She had her first BMB and the result was AML. She was 9 years old at the time.... 10 days before Christmas.

Jenna was placed on a clinical trial which included Mylotarg. She went into remission after her first induction, and received 4 consolidation rounds. She had minor complications from the chemo and left the hospital in June of 2005 to return to being a normal child..... for a while.

In May of 2006, after 16 months remission, Jenna went in for a bi-monthly check up. She looked the best she had looked in years. She was strong and growing, getting ready for summer vacation. Then the dreaded words that nobody wants to hear were uttered..... blasts....relapse. She returned the next day for another BMB and it was confirmed.

The first induction was a course of FLAG, which did not put Jenna back into remission. It was a very scary time, as the doctor's were not sure as to which chemotherapy drug would get her back into remission. With the clinical trial, Jenna had received most of the drugs used with AML, and with a relapse, it was evidence that they hadn't worked. It was decided that they would try Mitoxantrone, and that was her magic bullet. REMISSION.

Jenna received her cord blood transplant on July 21st, 2006. She engraphed within 14 days and was home on day +28. I am happy to say, that she has not spent another night in the hospital since that day, and does not have any major complications from the transplant, other than pre-mature ovarian failure. She is now 33 months post transplant and is a perfectly healthy 13 year old.

In February 2008 I was diagnosed with an agressive form of Breast Cancer. Jenna has been my inspiration through my last year of chemotherapy and surgeries. I have emulated myself after her. If she could do it with grace, dignity and laughter, so could I.

We are both cancer free, and grateful for each day. The sun is always shining when she's around.

New Poster

communityreply@lls.org — Tue, 30 Jun 2009 02:38:39 GMT

Hello everyone, My name is Bo.

I wanted to briefly tell my story to see if it's helpful to anyone. I'd love to hear back from anyone that has a comment.

In June of 2008, after some weird headaches and a fainting episode I was diagnosed with ALL with a Philadelphia Chromosome complication. If anyone wants to know more about the philadelphia chromosome, ask me and I'll elaborate.

I was immediately hospitalized and started chemotherapy treatment. I also underwent some radiation therapy from which the side effects were nothing to speak of (at least compared to the chemo)

After my first cycle of chemo, I was tested and found to be in remission. Under advice from my medical team, we continued to pursue a bone marrow transplant to ensure longer-term remission. My brother was tested and the results came back that he was a 'perfect match' for all 10 of the match statistics tested for. I don't ever remember being really scared from the time I was diagnosed. The only time I really even thought about it, was just prior to the transplant. This occurred just after they told my odds for survival versus contracting terminal graft vs. host disease. They explained that there was a 25% chance of contracting the disease and dying from it. That number really hit home as it was much higher than I expected. And it was probably inflated because I had some factors working in my favor (sibling donor match, fairly young at 42, and some extra weight that they said would be beneficial). I underwent a successful bone marrow transplant in October 08. I was released from hospital care in Novemeber 09 and all of the weekly tests have come back negative. So, far I remain cancer-free and my prognosis is optimistic.

Now here's why I'm telling my story: Although I've gone through this horrible period and it seems to be behind me, I'm feeling sort of weird. I wanted to see if anyone out there had similar feelings and had tried anything to combat them.

What I'm feeling now, is disconnected. Like my life is on a track and doesn't require any decision-making or guidance from me. I have returned to work and have some mixed results. My brain hasn't quite returned to normal and concepts that used to be easy for me to understand are requiring me to re-learn and constantly test in my head rather than just being second nature. In addition to that, I feel no real motivation to do anything. I just sort of go along for the ride. I'm trying to force myself to do stuff but that in itself requires motivation that is difficult to come by. I basically just try to get through to day until I can go back to bed for the night. There are a few tv shows that I follow and those have kind of become highlights of my life (something I'm not particularly proud of). I'm scheduled to try out a support group for cancer survivors next week for the first time. My hope is that the group environment might help spark some motivation.

One other thing that I should probably mention is that my medication regimin includes anti-anxiety/anti-depressant medication. I feel like deep down I'm sad and upset and lonely and scared for the future as a result of all this, but those feelings don't really reach the surface. That feels like effects from the medication although I'd have to stop taking it to see if that's the case and I'm scared of letting those feeling come to the forefront.

Ok., that's about it. Anybody that has questions, or comments, or advice is welcome to reply. If you'd like to email me personally, use bchaser@ca.rr.com for an email address.

Thanks for reading,

Benadryl was how I stayed on Prednisone

communityreply@lls.org — Sun, 17 May 2009 06:21:14 GMT

For any of you with anxiety problems, let me recommend Benadryl. For me, I'd be fine --- well, I'd have some insomnia --- during the 5 or so days of Prednisone, then the next day when I was expecting it, and didn't get it, I would go into a major panic attack. Then my husband started giving me Benadryl as a substitute, usually over the next several days. Life saver. I couldn't have handled that mental rape for 4 more cycles. The last cycle the Benadryl didn't put me to sleep --- I'd gotten a little too manic with the return of health --- but after trying Benadryl we went on to Unisom, which has a different formula. Did the trick.

I've read of several reports of people who this seems to be their first panic attack, which creates post traumatic stress and does not go away for some time. For those people, I'd recommend giving the Benadryl a shot, but looking seriously into a Benzo --- klonopin has served me well and it isn't like the SSRIs which actually create anxiety in about 15% of people and which take weeks to kick in, and have an anti-depressant factor which you may not actually be looking for. Like all anxiety drugs, klonopin is, of course, addictive, but I've gone off it before, and am moving off it again --- it just has to be done slowly, which unlike Prednisone, can be at your own pace.

The other thing that was a big problem for me was constipation. I really didn't get the help I needed on this one from the doctors, so let me just mention that normally, if you can drink 8 ounces of water pretty fast, then metamucil is a really good way to take care of this --- many people apparently take this all the time, like you would a vitamin, because it is just adding fiber to your diet, like oatmeal and other things do. Unfortunately for me, the lymphoma was having an effect on my intestines such that I was only able to drink about 3 teaspoons of water before being totally full (then wait 3 hours to take the same amount of baby food --- one way to lose 62 pounds, but not a way I'd recommend). If you can figure out how to be sterile enough for this, then I would recommend an enema as the best way to take care of your constipation in such a situation --- consult your doctor and use a pre-mixed kit.

Oh, and here's a suggestion for those of you who get mouth sores --- rinse your mouth out with water every time after you drink or eat anything, and stay away from citrus and coffee. Actually, when you start looking into it, pretty much everything --- including milk when it hits the stomach --- is acidic and I was having a big problem with that so when I was able to drink, I only drank water. I've been a person with mouth sore problems all my life and two of my chemo medications said they'd give them to me, but I didn't get any at all, and haven't since, as I continue to only drink water, and a little tea with a water chaser. I have wondered if the sore throats from radiation might not also be helped by this advice, though I did not have radiation.

My 14 year old daughter's recent DX

mariaday@rocketmail.com — Thu, 09 Apr 2009 02:52:34 GMT

First of all, Thanks for all the love and support we're receiving from all of you, even the people we don't know...it means so much to us. I know some of you have asked how this all came about so I will start at the beginning. Juliana became really sick in September and I had brought her into the doctors several times but they said it was just a viral infection. She eventually got an ear infection and was treated for that. She was put on antibiotics and seemed to do well for awhile. Starting at the end of December she came down with a cold and it never seemed to go away. She was very lethargic and was sleeping all the time. She started to complain about arm and leg pain. On January 9th she spiked a high fever. After 4 days, the fever was still there. So I took her into the clinic. Unfortunately, after blood tests they thought it was cancer. They had us go directly to Children's where they did more blood tests. After the blood tests they said it was a 95% chance it was leukemia. They needed to do a bone marrow procedure to see for sure. On January 14th, she was diagnosed with low risk ALL. The next step was to see if the leukemia cells and gotten into the spine so a spinal tap was done and it was CLEAR...so more good news. Immediatly she started chemo therapy and got a PICC line put in. Here is the plan so far...she will be treated with chemo, steriods, and other medicines for the next 2 1/2 years. After just 18 days, she was in remission! Her leukemia cells went from 89% to less than 2%! So far, we've had our ups and downs, but we are coping with this new "normal".

Thanks again everyone!

Maria Day

My Story

communityreply@lls.org — Sun, 12 Apr 2009 19:23:24 GMT

Hey my name is Karen, I'm 16 and was diagnosed with AML t(1,5) last August. The only symptom I had was severe dizziness and never had an infection despite the fact that on diagnosis my WCC was 0.1 and ANC was 0. At first doctors wanted to do a BMT because of the cytogenetics but I responded so well to the AML 15 protocol without BMT that in the end it wasn't necessary. I was in CR after the second course of chemo and finally finished chemo on December 14th. I had my end of treatment BMA on February 13th and life is basically back to normal.

When I was first diagnosed I read posts on the old site, they gave me so much hope and I return again in hope that my story can offer some light to others

Grateful for The Leukemia & Lymphoma Society

communityreply@lls.org — Thu, 21 May 2009 21:43:13 GMT

I simply want to say thank you to LLS. Your Co-Pay Assistance Program was a helping hand to me and my husband. My co-pay for Gleevec was more than our house payment so we were faced with extra financial stress aside from being newly diagnosed with CML. The counselor at my cancer center contacted LLS and LLS responded quickly with help. My family is so grateful you are here to help cancer families solve problems and have this wonderful site so we all may share information, stories and words of comfort. You truly are all angels.

Robin

A Life Changing Experience....

mcknight_mm@hotmail.com — Wed, 18 Mar 2009 20:04:41 GMT

My name is Megan and I was diagnosed with ALL (Acute Lymphoblastic Leukemia) in January 2001 at the age of 17, at that time this was a huge relief!

Let me back up, in Oct of 2000 I had hit my head getting out of my car to unload my surf board on Kauai where I grew up. It was one of those awww...jeeez moments where you want to say a lot more than that as I sat down in my car and held my head. All of a sudden this bump just grew up out of my head like in cartoons when Bugs Bunny gets whopped over the head by some anvil. Anyway, I was quickly over it and thought, "It's just a bump on the head"! Months had passed and the bump hadn't moved. It was the size of two golf balls combined and rounded off. When I'd go surfing my hair would get swept back and you could see it quite well. My friends named it my "eagle egg". I still didn't think much of it since I had got it from hitting my head. I had never been to the hospital for anything other then a physical. Clean bill of health, I never had any health problems and no cancer history in my family what so ever! This all had always made me do confident that I would never have anything to worry about as far as my health was concerned.

In December 2001 I mentioned the bump on my head to my mother at a craft fair and she secretly freaked out! Right after the fair we went and saw an old family doctor friend that lived up the street from us. He reassured us that if I got the bump from hitting my head, then it must just be a hematoma (a collection of blood from my accident) and that sometimes they take awhile to drain, or go away. Later that month winter break came along and my boyfriend from Washington State, Reid, came to visit me. My parents and I would spend much of our summers in Washington due to business, relatives, and friends. My two brothers would stay in Hawaii since they were older. I met Reid in Washington and we had fell in love. He came to visit me after both of our moms had bought him a plane ticket. It was only a few days after he came over and I started to experience these horrible headaches! I started to get swollen lymph nodes all over my neck and even in my face. We saw our doctor friend again and he said we needed to see a professional and recommended someone. I had a CT Scan, only to find out that I was allergic to the dye in the scan, which gave me hives all over. The scan was on a Thursday. We waited over the weekend as New Years passed to hear from the doctors. Our doctor friend went into the hospital and looked at the scans. He then told my brother Tony who he was good fishing buddies with that we needed to leave the island ASAP and seek professional help else where! That Tuesday as my headaches we're growing ever so worse, it was painful to be awake, we FINALLY saw a surgeon that looked at my CT scan. My mom had been calling the hospital non stop! The surgeon walked into the doctors office and said, "Oh my God your cat scan scared me half to dealth"! Bringing me to immediate tears! I had been so optimistic all along, and was just worried about getting my bump removed with as minimal hair removal. Now for the first time I understood that I might die!

For me as a snotty teenager in high school, this turned my world around. There are so many things that teens get caught up in with being cool and what not and they obviously know everything! None of those teen things mattered anymore. At this point I realized what I really wanted, I just wanted to live my life, have a family, and grow old and wrinkly. Things you never thought you had to worry about being taken away, instead we fight getting old.

The surgeon suggested perhaps removing the bump, but seemed so unsure and concerned. He explained that the bump on my head was seeping through the two bone plates on the top of my head and pushing on the dura of my brain causing these unbelievable headaches. Later on I would learn from other doctors that I was experiencing nearly the worse headaches that a person can have and be alive. Nothing could take the pain away! My CT Scan was faxed over to my aunt Pat in WA and she faxed it to Children's Hospital in Seattle. Next thing I new I was on a red eye flight to WA and was excepted to Children's as an emergency case. The flight was awful as the pressure from elevation was unbearable on my head. Once we got to Children's my parent's and I spent and entire day going doctor to doctor telling them my story. We saw a doctor we had seen on The Learning Channel (TLC) separating siamese twins. No one could figure out what was going on with me.

That next morning I was pushed to first on the list for a MRI. After the MRI a group of doctors discussed my case and came to us and said that they thought they knew what I had, but still wanted to do a biopsy to make sure. I told them I would wait until after the biopsy to find out. Mean while they took my parents aside and told them that I probably had an inoperable raptose (sp?) sarcoma. In other words they told my parents I was going to die. My parent's didn't tell me about this prognosis until after I was diagnosed.

The next day I went in for a biopsy. For the first time in my life I had anesthesia. I started to count backwards from 100, probably only got to 95, and then I remember I awoke, pucked into a pan that was held below me, I guess because first time patients with heavy anesthesia often do. Then the surgeon came running in cheering, "YES, YES you have ALL, if you're gonna have cancer this is the one to have!!!" All of the nurses and doctors were so excited and cheering for me! They all had thought I was a gonner before! I was then wheeled into the cancer ward at Children's and started chemotherapy.

I became a research case. Doctors had never seen a case of leukemia in which it had presented itself on someone's head in the form of a bump. They say I couldn't have gotten leukemia from hitting my head and above all, lived with it for 3 months. I had a bump and at some point leukemia cells began to cluster and create a party in my bump that got out of hand and that's all we really know. I was also interviewed by medical students from the UW for having such a great outlook and attitude through my year of chemo and radiation. I believe the mind is a powerful thing, and positive outlook is necessary. I also had a whole new outlook on life. I stopped being a bratty teenager and grew up a lot faster, but I'm still no where close to being grown up. Still not sure what that means. I learned to enjoy life more to the fullest and not to let little things bring you down. Most of all I learned compassion. I wouldn't be the quite the same person had I not gone though all that I had. I would have never been able to make it through without Children's Hospital. They are amazing! Everyone is so kind, caring, and funny! My nurse practioner, Karyn Brundige, got me though most of it. She is still a dear friend of our family. My mom was the biggest support! We lived together in Seattle with my great aunt Margaret, who was 90 at the time and was going senile, but no one really knew until we moved in and witnessed her getting worse with time. Shortly after my great uncle King move up who was 91. My mother was a care giver for a little over a year for all three of us. My aunt and uncle were great company. My mom and I helped keep each other sane and grew a friendship between a mother and daughter that will outlast anything! We lived in Seattle for 12 months of chemo and some radiation in the beginning of treatment. I continued some amounts of chemo once a month for 1 1/2 after that.

Reid, my boy friend at the time had started school in Montana and switched schools to go back to Washington to live at home and visit me every weekend in Seattle while I was being treated. He has been such a huge support. After I graduated from high school on time and ahead thanks to Tom Powers, an amazing tutor at Children's Hospital who correlated my schedule with my high school counselor, Reid and I went to Western Washington University, where we both graduated. I graduated in New Media Design and he in Environmental Science. We recently married and own a home in Bellingham, WA. This Sunday, March 22nd, we will be attending the Big Climb for the LLS in Seattle at the Columbia Tower. We'll be climbing 69 flights of stairs! Life is good and I feel as good as new at age 25, living, "chillaxin", cancer free, and eventually look forward to starting a family and growing old and wrinkly!

What do I do with this new lease on life?

communityreply@lls.org — Wed, 13 May 2009 21:42:32 GMT

It was the winter of 2007 when I started working a new job ontop of full time University. I was 26 years old at the time, and newly divorced, so after raising two kids and gaining my independance I decided to work on my education to provide for my 2 children. "Gosh I am so tired" I thought as I plowed my way through school all day long, only to work every night until 11pm. I began skipping my morning computer science because well I was too tired and the professor only ever read straight from the book anyways. I found my self sleeping from 11 at night until 2 in the afternoon and was still not satisfied. My gums began to swell up, and bleed, and I just figured it was normal gingavitus, but then I started sweating profusely even when I wasn't hot, often when I was cold too. This was when I thought maybe I was anemic. Being an aging woman, I just thought I was anemic and began taking iron suppliments like candy. It wasn't until I really thought something was wrong when I stated mensturating and the bleeding was non stop, it was like I was haemmoraging.

the weekend comes, and my kids are set to visit me, I was really excited to see them but found my self setting them up at the kitchen table with krafts to do while I slept. The house was becoming more and more of a mess as I could not take care of my self adequately. That weekend I brought my kids to the hospital with me to see what was wrong. The blood work took quite a while, so at about 11pm, my ex husband came by to pick them up. It wasn't more than 10 minutes later that a doctor came into my room (whom I was sharing with a man with a broken leg) to tell me that I had cancer. I had a platelet count of 9, my wbc was 28. He insisted I take a bed that evening at the cancer centre here. I refused saying "I need to call my friends and family and pack some things first." I was terrifyed to tell them. My mother didn`t believe me, my boyfriend dropped the phone and began sobbing... my ex husband was in shock.

The next morning with my treasured items packed for the long haul, I blasted my MP3 player all the way to my new home.

Immediately they inserted a central line and scheduled a mugga scan, the next day I was on a strict regiment of Ara-C and a trial of (Danarubacin) that was induction 1. The Danarubason ruined my liver and caused massive swelling, vomiting, and water retention. I gained 16 pounds of water in 2 days! after the induction, I was tested and found to have not achieved remission. I went through a second induction of just Ara-C and the treatment failed before it finished. The previous session, I was able to watch my daily counts drop to 0.01, this time it stalled at 0.6 and then began to rise again. Before my counts even got to 10, they started me on High Dose Ara-C, my third induction along with etopocide. Remission at last! I was able to start consolidation therapy finally after 3 months in the hospital. My consolidation treatment started while the doctors began looking for an unrelated donor.

After 2 High Dose Ara-C concolidation treatments and neupogen shots inbetween to raise my white count, I was sadly informed that I could not have any more chemo therapy. I was at my limit for High Dose Ara-C. My crutch was pulled out from under me and I was pushed out the door. 3 Days later, they said they found me a donor match, 10 out of 10!

We preped me for the transplant, I was put back on chemotherapy for about 10 days, and at the same time recieved total body irradiation. It was the most painful thing I have ever gone through in my entire life. Once I was pretty much dead and living off of other peoples bags of blood they gave me a stem cell transplant september 12 2008. I did do well post transplant, no fevers, no complications, nothing! They allowed me to go home early, only 17 days after transplant. My counts recovered better than anyone they`ve seen! I felt terrible at home, coming off the phentanol was too hard on my system. I admitted my self back into the hospital for another week. I have had some signs of gvhd rash so they took a biopsy that came out negative. I was put on massive doses of steroids to combat it, and no signs of chronic gvhd. I hope to soon be off the fk 506 because it makes me tremble, and I am almost off the prednisone.

That would be my story... I`m still alive, but there`s that little voice in the back of my head that reminds me it could all be taken away.

Kristin

My husband has AML

communityreply@lls.org — Wed, 28 Oct 2009 18:12:39 GMT

My husband is 76 years old and has been in and out of the UCLA hospital 6 times since July 7 when he was diagnosed with AML (FLT3, D835 chromosome mutations). He completed the induction phase of chemo and a subsequent bone biopsy showed his white cells were "clear". After consolidation chemo that was not the case so he had relapsed. It was decided to try Mylotarg, another chemo treatment used primarily in the elderly. The second treatment of Mylotarg has been completed and he is currently hospitalized and receiving blood and platelet transfusions as needed. His counts have been at zero for a few days but have not started back up. Yesterday he was complaining about a sharp pain on the right side of his head - from his eye to his neck - and this morning is having double vision. This has been a veritable rollercoaster and we take it "day to day" as his oncologist suggests. The doctors say that the reason he has tolerated these three rounds of chemo is because he was in very good health - no heart problems, no diabetes, and he exercised every day and was very careful about what he ate. It's so very difficult to know what to do - I have been cooking food and taking it in every day because he is so tired of the hospital menu, but he is not eating very much. He owned a manufacturing company and was working until he was diagnosed - said he was planning to retire at the end of the year but the decision was made for him. We have had a wonderful life together - 48 years of being best friends and I cannot imagine life without him. Guess I am interested in any thoughts anyone has about this process and what your experience has been. Thanks for listening.

Diagnosed with lymphoblastic lymphoma stage 4 at 13yrs....

communityreply@lls.org — Sat, 10 Oct 2009 23:57:05 GMT

My neice was just diagnosed with lymphoblastic lymphoma stage 4....Last week this time none of us would imagine that she had anything like that. Couple of weeks ago she started with a cold and the cough got worse everyday. Doctor prescribed an x-ray and they found a mediastinal mass as big as a small football. One of her supraclavicular lymph nodes was enlarged so they took a biopsy...result positive. Doctors have started steroid treatment to shrink the mass and are starting the chemo in 5 days....Our whole family is devastated cause my neice is the most beautiful, lively, friendly person....she is so full of life. Can someone give me an input about the prognosis? Did anyone have a similar experience around the same age group and stage?

Please give if you can...

communityreply@lls.org — Thu, 18 Jun 2009 21:46:15 GMT

Hi everyone,

My mom was diagnosed with CLL on March 12, 2008. She is now enduring chemo to try and knock back her WBC and to elevate her red blood cells. Simultaneously, my father is about to go through a double lung transplant for Idiopathic Pulmonary Fibrosis. So, both of my parents are sick. I decided to start a website called, Hope for my parents www.hopeformyparents.org - that will share their story and discuss their illnesses. I've also started a fundraiser through Fundable.com which can be visited here — Hope For My Parents I am trying to help raise some money to offset some of their medical costs. If you can give, please give a little. I'm also blogging about their progress. I hope that you will take a few minutes and visit the site. Please leave a note on the blog to let me know you came by.

We are all in this together...

Sunny

Need Help Getting Started?

christine.lazzari@lls.org — Thu, 22 Jan 2009 20:31:51 GMT

View this post to learn how to set up and account, login and begin adding your story to Tell Us Your Story.

My own story/blog....

jt15221@verizon.net — Thu, 11 Jun 2009 16:43:14 GMT

Here is my own story via my CML blog. Hope you enjoy it.

http://www.joethornburg.blogspot.com

My son's story

aoperez@co.fresno.ca.us — Fri, 06 Feb 2009 01:06:21 GMT

My son, Mondie, was diagnosed with acute lymphoblastic leukemia on July 13, 2006. He was 28 yrs old. He passed away on June 30, 2007. Mondie was married and had two little girls. Christmas 2006 was the best he'd ever had thanks to the Leukemia & Lymphoma Society. Volunteers brought so many gifts for my son and his precious family. LLS helped Mondie throughout his treatment with co-pay assistance, resource information and support. Losing Mondie was the the nightmare all parents dread. I knew little of blood cancers until Mondie was stricken. Our whole family was turned upside down especially after we lost him. He was so brave and optimistic even when he decided to stop any further treatment. He had been in remission from August 2006 to April 2007. He relapsed and was admitted to the hospital on April 8th. The chemo wasn't working so after several treatments and infections Mondie had had enough. He had an infection for several weeks. Several different antibiotics were given but none worked on the bacteria causing the infection. The cancer was multiplying and the infection was growing more and more. On July 25th Mondie was too tired and just wanted to go home. His wife, Salina, and I spoke with his oncologist and treatment was stopped. Mondie was so happy to have us with him his final days. He wanted to go home so on July 29th we took him home and he died at 10:30 a.m. the next day. He left me his two daughters to remind me of how beautiful he was. His wife is like my own child. She was wonderful with Mondie. I could never repay her for loving my son so much and for making him happy. It has been 19 months since his passing and I am reminded every day that he is gone and I will never hear his voice or see his face until it's my time to go. Until then I have his babies to comfort me. I tell them stories about their daddy so he can remain alive in their minds and hearts as he is in mine.

For Anyone Interested

communityreply@lls.org — Tue, 12 May 2009 05:21:34 GMT

I have kept a blog for friends and family since being diagnosed with CML in June of 2008. You can read it at http://hatefulblood.blogspot.com if you like.

Need advice

communityreply@lls.org — Sat, 18 Apr 2009 11:53:56 GMT

I just joined and hope that this is the appropriate place to ask. In February, 2003, a young girl, Meghan Marie Mack, earned her Angel Wings at the age of 23 months. Among the lives that she'd touched, were 4 songwriters, who joined together to write her a song. It wasn't the best song ever written, but it was from the heart.

Now, this summer of 2009, an independent film production company in Washington DC, is turning the story of Meghan and the writers into a low budget, family oriented, feature film to be called "The Shoebox".

My question regards shooting the film's finale, which will be as a Light The Night Ceremony/Balloon Resease at a local stadium. They, the film makers, are hoping to gather as many "extras" as possible to fill the stadium, and are looking for the best way to get the word out.

Please feel free to e-mail me with any advice/suggestions/contacts in the D.C. area. We would like to get his right.

Thanks

Midnite

My Story

pcollins0720@gmail.com — Fri, 24 Apr 2009 09:08:25 GMT

I served our country for 10 years in the United States Army. On October 2, 2006, I was diagnosed with stage 4 Hodgkins Lymphoma. I went through 15 cycles of chemo, and I was diagnosed in full remission in Mav of 2007. It is hard for me to go to my check ups now, because I am no longer in the Army, and I am currently in discussions with the Veterans Administration to be able to go to the VA hospital here in my hometown in order to be able to get my check ups, but it is an ongoing battle. My heart, thoughts,a nd prayers go out to all of you that are either newly diagnosed, undergoing treatment, in remission, or the family and friends of a cancer patient. Also, to those that work professionally in the Oncology field, I thank you.

Graham's Story

samantha@adonorforgraham.com — Sun, 05 Apr 2009 09:50:19 GMT

Hi,

I've just headed over from the LLS boards and wanted to say Hi to everyone. Here is a bit about my husband Graham and his journey from his website:

In April 2007, 41 year old Graham Barnell was diagnosed with a deadly type of leukaemia (AML with t(6;9) & FLT3) that affects less than 6 adults a year in Australia and his only chance of survival was a bone marrow transplant.

After searching the worldwide registries for 9 months, the Australian Red Cross was unable to find a suitable donor and in February 2008, his Doctors told him he only had weeks to live without a transplant.

Undeterred by the Australian Government’s refusal to fund treatment in the US, Graham’s friends and family raised over $A400,000, enabling Graham to travel from his home in Melbourne, Australia to Seattle in the USA for life-saving treatment in April 2008.

On Wed 6th August, he was the 8th person in the world to receive a Double Umbilical Cord Blood Stem Cell Transplant with ex-vivo expansion of one cord.

The treatment was a complete success and he is now leukaemia free.

He is back in Melbourne, recovering from the treatment.

We are still fundraising to pay for his treatment and he writes a regular blog if you want to have a look: http://www.seattle-times.blogspot.com .

Sam xx