Leukemia

Reading this makes me very sad. I don't usually come here, it's been close to a year; something told me to check today. February 6 will be the 2 year anniversary that I lost my dad to the same cancer Tim has.. AML Leukemia. Reading Tim's story below brought back so many things, although my dad never got to the transplant stage, he wasn't that lucky. I don't know what Tim's age is, (IIRC he's about 50?) my dad was 69, age has a lot to do with outcome as does whether someone smokes or not; dad smoked 3 packs a day most of his life. AML is a pretty specific cancer, my dad got it as the result of using chemicals at our gas station that contained benzene. There's currently a class action suit in Texas. I don't know if Tim was exposed to Benzene, but if he was, have Sarah contact me, I will give her the info for the lawsuit. I urge everyone to go to the link below to read up on the risk factors for AML. If you have been exposed to any of these things, you need to have your blood tested regularly. People like mechanics, auto body, house painters; should do more searching as what I linked to doesn't go into that much detail. When the attorney for the suit came over with his product binders, I was shocked at the amount of products that people in the painting industry were exposed to. House paint, as well as chemicals to clean the brushes contained benzene. For a mechanic like my dad, there was one binder, for someone in the painting industry there were two. I can tell you from experience with my dad that Tim has not had it easy these last few years. Watching your loved one go through this rips your heart out. While I was at the hospital with my dad (the 1st month he was admitted) I would often think of Tim, although I've read posts here, I had no clue until I actually lived it. I contacted him at one time during this; to let him know that I had started folding back in 2004 in his honor. Tim's one of the good ones, it ticks me off that he has to go through this. Back when I 1st started folding, I had no clue my own dad would be affected by cancer, then my FIL a week after my dad died. I ask that those of you that are friends with Tim to please consider downloading and installing the client. I'm pretty sure Jan folds, she can recommend a team, and if there's already a name set up in Tim's honor she can give you that as well. I have to say that Tim is a lucky guy. He was diagnosed with AML back in 2004, it's now 2008. My dad, was diagnosed June 2005, passed February 2006. When I did my original research back in 2005, my dad had a little over 10% chance of survival. I've always thought my dad was very lucky to have gotten 8 months.. Being dad's main care taker, I cherish those 8 months I got to spend almost every day with him. While I can see it hasn't been easy for Tim, the fact that he's gotten this far means he is a survivor. I hope this is just a set back & we will read that once again, Tim brought out his superman strength and pulled through. I'm surprised that Tim had a bone marrow transplant. Back in November 2006, the Cancer Institute was already doing stem cell transplants which are not as "hard" on cancer patients as bone marrow. Bone marrow wasn't an option for my dad, there was like a 1 in 5 survival rate, not good odds to me. The doctors at the Cancer Institute told me they were trying to get away from bone marrow as it is hard for a person in their 20's. Dad was actually scheduled for stem cells, but went to the hospital for his every few days blood count, had a fever & had to be admitted. During this time my dad pretty much gave up, refusing to sit up, getting fluid in his lungs, making his heart weak. Hopefully Tim has the strength to sit up and even take a few steps, it is very important. My dad used to get infections also. It breaks my heart to hear Tim is going through this yet again. With cancer patients & Leukemia, one minute they could be fine, the next they have a high fever, no one knows why. With my dad, it was usually his PICC line, after a few days it was starting to get infected. Taking it out always made him better until the end when his PICC site (in his arm) blew up like Popeye's arm. There was nothing they could do, trying to find the reason why could kill him. In the meantime Tim and Sarah had many conversations about the news they had been given by Tim's doctors. They've shared many of tears together but the two of them have decided that Tim will not be taking any more treatments to fight the leukemia. In fact, the doctors have told him if he chose to do so it would only shorten the two months that he has. Are they up to getting a 2nd opinion? I don't know anything about Duke Medical Center and how advanced they are for Leukemia. I can say that with my dad, had we gone back to his original cancer center he may have had more time. The hospital that was "treating" him at this stage was not as agressive.. the doctor used to tell my dad that he was going to go anyway. My dad pretty much begged this doctor to admit him for his arm swelling, he wouldn't. I guess I wonder if Tim's at the best place he can be? I do remember a site that listed hospitals & how good they were for each type of cancer. Not sure I even have the link any more. I'm numb to say the least. Hopefully Tim has enough fight in him. Hugs to both of them. Tim & his family will be in my thoughts. Hi everyone, I want to start off by saying thank you for all of your thoughts and prayers. Youll never know how much it meant to me and my family. ItÂs been a long time and IÂm not sure what youÂve heard or been told so I guess IÂll just start from the beginning. On October 7, 2004 I was diagnosed with leukemia (AML) and was placed in the hospital to under go chemotherapy. I have to say that up to that time IÂd never been so sick. The chemo really did a number on me but no matter how bad it was I always managed to laugh about it all. I just was not going to let this get me down in any way and that I was going to make the best of it. After my chemotherapy I did go into remission and after I spent 6 weeks in the hospital I got to go home. Even after going home I was still in and out of the hospital a lot. It was like every other week IÂd have to go back in the hospital for a week at a time mostly because of running a fever. Well after a few months I was doing better and better and I would just have to go see my oncologist for follow-up visits. I was told that if I stayed in remission for 2 years that I would be considered cured of the leukemia. In August, 2005 I now find out that I had thyroid cancer. I had to have my thyroid removed and also had some radiation. All went well and so far so good on that. Well October, 2006 rolls around and I go see my oncologist for my follow-up visit and blood work and everything looked good and I was considered cured of leukemia, everyone was so happy. Now I go see my primary care doctor in November, 2006 for a check-up and blood work. Late that evening I get a phone call, itÂs my primary care doctor to tell me that my blood counts were really bad and that he had already placed a call to my oncologist. It appears that the leukemia was coming back less than 1 month after I was considered cured. Did I let this get to me, oh no. I had already beat cancer not once but twice and I knew that I could beat it again. So here I go back in the hospital again for more chemotherapy. This time I was in the hospital for about 2 months. During this time is when my oncologist told me that I would have zero chance of surviving without a bone marrow transplant and that I would only have a few months. He also told me that IÂd have only about a 30 percent chance of surviving the transplant. Well my response to him was "what are we waiting on, lets do it". After getting out of the hospital in February, 2007 I was sent to Duke Medical Center in Durham, NC to start the bone marrow transplant process. We spent the day having all kinds of test done, blood work, talking with doctors, nurses and other staff about the transplant process. The next step was to find a donor. Being I had no one in my family that was a suitable donor they had to look for a donor on the National Bone Marrow Registry. The National Bone Marrow Registry has over 10 million people signed up as donors so it shouldnÂt be too hard to find a donor, right? Well I was told that being I was as sick as I was that I would have to have a perfect match which meant that there are 12 things out of 12 that they have to look for in which the donor would have to match. I was also told that some patients come back with over 100 possible donors when some come back with not a one. In March, 2007 IÂm told that they have 3 possible donor matches. IÂm thinking, only 3, out of over 10 million people, wow. Well I only need one so I was OK with that. In April, 2007 IÂm told that 2 of the 3 donors didnÂt pan out so now IÂm only down to one possible donor and that they are still testing that donor for a match. Well in May, 2007 I get my phone call. They have my only one perfect match and theyÂre ready to start my transplant process and that I needed to report to Duke Medical Center on May 10, 2007. By now, I didnÂt think that I could be any sicker but I still kept my spirits up. As far as my donor goes all I know is that I owe a 23 year old female my life that I hope to meet some day. So on May 10, 2007 I start more chemotherapy to prepare me for my transplant. On May 16, 2007 I receive my transplant. After I received my transplant then itÂs another week of chemotherapy. Towards the end of my chemotherapy I started running a fever of 103 degrees. They did everything to try to control the fever but nothing was working. They ran all kinds of test to try to find out what was causing the fever but with no luck. Now after almost a week with the fever my kidneys started shutting down, my blood pressure was dropping and I was starting to have problems breathing. It was then that the doctors told my family and I that I needed to be in the intense care unit on a respirator. The doctors told us that anything could happen at this point and that I may pull out of this just fine to that I might not make it at all. Before I even went to Duke I had already had a talk with my family and told them that I wanted them to know that no matter how hard this gets that I would not give up and no matter how any of this ends it was not because I gave up so when everyone asked me what did I want to do I told them "what are we waiting on, lets go". Well after spending about 2 weeks in the ICU on a respirator they started slowly pulling me off the respirator. Now IÂm off the respirator but now thereÂs another problem, they canÂt get me to wake up. IÂm now in a coma and I donÂt respond to anything. They send me for a MRI of my brain and the MRI shows that I have brain damage to the left and right side of my brain which controls motor skills. The doctors then told my family that even if I pull through this that the changes of me ever communicating with anyone or walking again would be slim to none. After spending a week in a coma I slowly started to wake up. At first all I could do is hear things going on in my room and hear people talking to me and touching me. During this time I still could not move anything or even open my eyes. No one even knows if I could hear them talking. On the unit that I was on no children were allowed under 6 years old so neither of my grandsons could visit me. One day my sister called my wife on the phone and while my sister got my oldest grandson on the phone my wife held the phone up to my ear and my grandson would holler real loud "wake up Pop-Pop, wake up". During this time I still could not move or open my eyes but I could hear him loud and clear. I really thought that he was in the room with me. And yes my grandsons call me "Pop Pop". My sister can really get on my nerves at times and me being in a coma didnÂt change a thing. Every time she was there she was always rubbing on me and getting in my face talking to me and just would not leave me alone. Well for the first time in about 3 weeks I opened my eyes, looked at my sister and mouthed the words "leave me alone d*mn it" then I closed my eyes and went back to sleep. I couldnÂt talk but they read my lips they said. Needless to say everyone was so happy. That just goes to show you that even in a good coma a woman can still get on your last nerve. During the week that I was in my coma I had a physical therapist that came in everyday and worked with me. I remember as I was slowly coming out of the coma that he would try his best to get me to wiggle my toes. HeÂd take my toes and wiggle them for me and say "come on Tim, you can do it". As hard as I wanted to, I just couldnÂt do it. By then I could open my eyes and look around the room but that was it, I still could not move or talk. No one still didnÂt know if I knew what was going on or not. Well one day my physical therapist came in to go over our daily routine and as always he wanted me to wiggle my toes. I laid there thinking how bad I wanted to do this for him and itÂs like it took everything I had but I finally did it, I wiggled my toes. He went crazy. You would have thought that he just won the lottery or something. It was really funny. I was really happy that I had my eyes open and saw the look on his face. Even after the improvements that I made a couple of questions that my family were having was if and when I ever woke up from my coma would I be able to talk, if so would I recognize anyone. Well they would soon get their answer when on one day Sarah was setting by my bedside and I opened my eyes, raised my hands in the air and said "I love you Sarah". One day I had a nurses tech come in to my room to take my temperature. Being that I was in a coma she had to take my temperature in my ear. Well as I was laying there with my eyes closed, she placed the electronic thermometer in my ear and when she did I came to, opened my eyes and yelled out a loud "Grrrrrrrrrrrrrr". Needless to say it scared that poor little girl to death. After this happened my family knew then that I was going to be alright because I had my sense of humor back. OhÂÂÂ. Remember what my doctors said "if I pull through this that the changes of me ever communicating with anyone or walking again would be slim to none". Well not only did I pull through this but IÂm communicating and walking just fine. My doctors canÂt explain it, they have no idea. I canÂt help but to laugh at my doctors when I see them because they were so wrong about me. They even had nick names for me like Superman and Miracle Man to name only a few. I show no signs or symptoms of any brain damage, not even any memory loss. After I fully woke up from my coma I had some of my doctors tell me "Tim, you know we about lost you donÂt you?" I would just tell them "yep, but you didnÂt". They also told me that they had never had a patient go through what I had been through and that the chances of this happening again to anyone was less than 1%. I would even have doctors come to visit me that didnÂt even have anything to do with my treatment but just heard about me and wanted to meet me. TheyÂd ask me was I the Tim that theyÂve heard so much about?" I understand that I was big news at Duke. Everyone at Duke were great, I just canÂt say enough good things about them. They treated us like family. They not only cared for me but my whole family. The love, care and compassion that they showed us was like no other. Everyone from the lady who kept my room clean to all of the doctors who made us all feel so special. I ended up spending about 2 months in the hospital then I got to leave the hospital to stay in a temporary apartment near the hospital. I had to stay close to Duke just in case I took a turn for the worse. Even after leaving the hospital I still had to go to the bone marrow transplant clinic everyday, 7 days a week for blood work and IVÂs. After I left the hospital I was taking right at 50 pills per day, IÂm now down to 21 pills per day and 5 shots. After spending about 2 months in the hospital and about 3 months in the apartment I finally got to come home. Now I get home and find out that my hard drive and monitor went bad on my computer. Now for the first time in about 5 months IÂm crying. Oh well, everything canÂt go great all the time can it? No matter what you think after reading this I do consider myself very lucky. I was very much at peace with everything that was happening with me and really was never worried about anything. I really felt that all of this was harder on my family than on me. The main thing that bothered me was worrying about what my family and friends were going through. I could hear it in their voice, see it on their face that they were scared to death but I knew that I had to be strong for them even though I was the one sick. IÂm sure most of you donÂt understand the reasoning behind my thinking but because of that thinking is the reason I fought as hard as I did. IÂm in no way out of the woods yet but IÂm doing a lot better now than before the transplant. The bone marrow transplant was a success and I am in remission. I still have to go to the Bone Marrow Transplant Clinic at Duke every Monday for blood work and follow-up visits but as I improve IÂll not have to go as often. I have to say that what I went through has really taught me a lot. To name only a few, one thing is how important support from your family, friends, and medical team means, doctors can be wrong and sometimes that can be a good thing and even while in a coma it is possible to understand whatÂs going on around you. And faith. If you ever think that I had a bad time during all of this, well donÂt. If you ever think that youÂre having a bad day then listen to this. While I was in the hospital we met a woman there, her 22 year old daughter was a couple of rooms down from me. She had leukemia and had already went through a bone marrow transplant and had went home but had to come back to the hospital because of complications. She was at the hospital with her daughter almost 24/7. Her daughter passed away just a few weeks ago. So youÂre thinking, how sad. Well the story does not end there. Before this she had already lost her two other adult children to leukemia. Within a 3 year period this woman lost all three of her children to leukemia. So if you think youÂre having a bad day just think about the day sheÂs having. IÂve had so many people tell me that I should write a book about my experience, well I donÂt know bout that but I have been thinking if I did what would the title be. I came up with two, "To Heaven and Back" and "Just Wiggle Your Toes". Tim

Leukemia

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