I was diagnosed with Acute Lymphoblastic Leukemia (ALL) in November of 2007. After the diagnosed I signed up for a study which was a double induction treatment. Basically they take the normal treatment for ALL and hit you twice as hard. I was in the hospital for 2 weeks for the first treatment, getting out the day after thanksgiving when I was released to go home but still had to have a few chemotherapy treatments until the next treatment started. On January 2cd 2009 I was hospitalized again for my next treatment. I was hospitalized again for 2 weeks, this round was a little rougher with more side effects such as nausea and vomiting.
After these two treatments they closely monitored me for my blood counts to recover, but they never did. I was then diagnosed with bone marrow failure, which meant that my bone marrow stopped producing cells, these cells are your red and white blood cells as well as your platelets. So in order to stay alive I had to have multiple blood transfusions.
Then I was faced with the decision to undergo a bone marrow transplant or just wait and see if my bone marrow will recover, but even at that they said that I would still need more treatment in order to keep the cancer away and the Doctor was afraid that if he gave me more chemo that it would just worsen my condition with bone marrow failure.
I felt I didn’t really have a decision, so they started with the process and got me in the hospital as soon as possible. I was in the hospital for over 7 weeks, in one room. The started with Radiation and then Chemo and they gave me all that they could, there goal was to kill every blood cell in my body. After that they kept me alive by having transfusions until it was the day of my transplant, which was 06/07/08. After that they started to count down day negative 1, then negative 2, and so on. I was on an extremely high dose of prednisone which made my body swell up from the waste up, especially on my belly and my face. Then the radiation started to kick in and my hands and my feet were burnt and it was eating holes in my mouth. My lips were so swollen to the point that I thought that they would explode, and they were covered in scabs. I was completely unrecognizable. With no hair and a swollen scabbed lips, tongue and cheeks, I couldn’t talk, eat, or drink and didn’t know if I was going to live to see tomorrow.
At this point in time I had a husband and 2 kids. My son was 8 and my daughter was 11, which was way too young to see their mom going through this. They had watched me go through everything up until this point but once I got so bad that I was scared to look at me in the mirror I wouldn’t let my kids come see me, and this scarred the hell out of them.
I was 31 years old at this time, and all that I could think of was my kids still believe in Santa Claus and I can’t die, I have to live! There were times that I don’t remember in the hospital, people would come see me and I don’t remember them. I had 3 central lines in me with more medicine that I had to have 3 machines to control them, which one of them was pain medicine that was 5 times stronger than morphine, which is why I can’t remember some days.
After I was released from the hospital I had to rent an apartment that was within 20 minutes of the hospital, and every other day I had to go back to the hospital to get checked. I was on 62 pills per day, with many side effects, but the biggest issue was my body was fighting the transplant, which was called GVHD.
After more than 7 years I still have GVHD, and I am still on 34 pills per day. Before I was diagnosed I was a Golf Course Superintendent, actually the first female in Utah to become a class A female Superintendent. I had to leave this job because of everything, which was my dream job. I am not supposed to go out in the sun because it makes my GVHD flare up, which means more medicine to control it. My life was all about the outdoors and I still have a passion for the outdoors, I love hiking, boating, camping, horseback riding, fishing, snowmobiling, skiing, hunting, and gardening. My life was working and playing outside.
Because of all of the medical bills and the lack of my income, we are about to lose our house, and I have more bills than I can pay. We make monthly payments to the hospital and they take every bit of taxes that we get back every year. I would love some help to get my bills under control, especially for my kids, whom are really struggling, still to this day, watching me continue to fight for my life. They don’t understand why we can’t go camping anymore, or do the things that we used to do, but we can’t afford groceries most weeks.
The following is a letter that my husband wrote to my donor, that I would like to share.
Dear Bone Marrow Donor: June 11, 2009
Words can’t express the gratitude that I have for you that you would put your life on hold, to give a complete stranger the gift of life again. Thanks to your decision you have gave my beautiful wife the chance to see our children grow up and experience the world first hand.
Thank you for giving me my wife back. I’ve always told her that I wanted to get old with her, and watch our grandchildren grow up. A few years ago I thought that our dreams was coming to an end, at first I was thinking how would I handle raising two children all by myself, then there was the fight that came out, and I told her that it was all right we would beat this, it was just a little cancer. Although in side I was scared out of my mind, but I could not show her this. I remember the first chemo treatment and staying in the hospital in those things that they call a guest bed. ( If you want to call it a bed!) The next time we stayed in the hospital I brought my air mattress, if you want to play the biggest joke on the nurses, (If you ever are in the hospital) bring an air mattress and blow it up on the floor with out them knowing. She would get into bet with me on the floor, the nurses would come in the room in the night and look around, shut the door and go looking for her, the day nurses would tell the night nurses to go back to the room and look on the floor she is with her husband, we would sit on the floor laughing so hard when they would come in and say we thought we lost you or you went home. It was so hard to hear the news that they though that her bone marrow was in failure and that she had to have a bone marrow transplant to survive.
I remember the day when they found you as a donor it was a great filling even though I knew it would be a great up hill battle to get the cancer killed, and the bone marrow to take to her body. It was a great battle and she was a strong as I’ve ever seen her in all the years that I have known her. To this day she is now cancer free.
Last weekend was my wife’s second 1st birthday of her life, Thanks to you we will be making a lot of great memories together with our children. I thank god every day that when I wake I get to look at her next to me. I hope that you would like to meet this great person that you gave a second chance at life. My wife is a great person with the biggest heart and a laugh that is contagious. With out you my life that I know would have ended, and I honestly don’t know how I would have done in my life with out my wife.
I hope that one day we could meet and you could meet my beautiful wife and get to know her and my family. Thank you again for all that you have done for my family.
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