My Story

I decided to tell my story from the beginning up to now so that those of you who are new to my blog can hear my full story.
In 2008 my husband, two young sons and I moved from Utah to Alabama for my husband to attend the Mcwhorter School of Pharmacy. My husband went to school during the day and worked part time at night while I stayed home with our boys. During the summer before his 4th and final year of pharmacy school I noticed that I was sick all of the time and I was constantly exhausted. Then I began having night sweats and hot flashes. My doctor thought that maybe I had Mono. Finally my gums became swollen and red and I had a severe headache. My headache finally prompted me to go to the emergency room on November 14, 2011. There they performed blood tests and found that my white cell count was at 66,000 (normal is 500-10,000) They immediately assumed I had Leukemia. They admitted me and performed a painful bone marrow biopsy and confirmed their diagnosis. The type of Leukemia I have is called AML. Without treatment patients have 1-4 weeks to live. Because of the seriousness of my disease they immediately began inpatient intense chemo therapy. I was in the hospital for 32 days. During that time family flew in from Utah to take care of my kids (now 3 and 5 years old) while my husband continued his education and spent the nights at the hospital with me. When I was finally able to go home they let me stay there for 1 week. Then it was back to the hospital for a 6 day stay of consolidation chemo to ensure I stayed in remission. After this round of chemo I developed a fever of 104 and my blood pressure dropped into the 70’s. I was hospitalized and put on numerous antibiotics. My fever persisted and the doctors couldn’t figure out the cause. Finally they discovered that my Gall Bladder was enlarged and infected. Also, because of all the antibiotics I had kidney failure and liver failure. They also discovered that the intense chemo had caused heart failure. They inserted a drain tube into my gall bladder because I was too critical to operate on. They then kept me in the hospital for 2 weeks until my kidneys and liver recovered. I was finally able to go home for 2 weeks! Then I was back for more chemo. They lowered my dose this time and I tolerated it much better. By this point (mid February) my husband had been unable to work since November, our student loans were running out, and our medical bills had climbed above $10,000.00. Our family and friends came together to pay our rent and utilities. We then decided that we should move back to Utah where we could live with my parents so our kids could have a more stable home and I could receive treatment at the Huntsman Cancer Hospital. We moved on February 29. That week I began having severe pain in my gall bladder. One week later they were able to remove my gall bladder only to find that there was a hole in it! After recuperating from surgery I went in for my 4th round of chemo. My doctor then told me that with chemo alone I only had a 30% chance of long term survival (they consider 5 yrs long term) and that if I came out of remission they would not be able to use the intense drugs that they initially used in November because of my heart damage. They were afraid they wouldn’t be able to get me back into remission. He said my best chance was to do a bone marrow transplant. After transplant I would have a 70% chance of long term survival which is a number I could accept much better than 30%! The process of a transplant first involves finding a donor. Remarkably they were able to find me a donor that is a 100% match! Then I will have about a 35 day stay in the hospital where I receive more chemo, then they implant my new bone marrow. The main problem in leukemia patients is that their immune system does not recognize the cancer cells as being foreign. The cancer is then allowed to grow until there is no more room for regular white and red blood cells. The goal of transplant is that when you take someone else’s bone marrow and implant it in a leukemia patient, the new immune system takes over and recognizes the cancer as being foreign and begins to attack it. The new immune system eventually eradicates the disease. While this sounds like a great plan, it can also be a very dangerous and lengthy process. After I am released from the hospital I will need to stay in an apartment or hotel close to the hospital for the next 70 days. If I get an infection of any kind I will need to be hospitalized and receiving antibiotics within 2 hours for the best chance of survival. Full recovery takes 1-5 years with weekly doctor visits. We are currently preparing for transplant to begin on May 11 (my 28th birthday!) My husband is set to graduate on May 18th in Alabama. I am very sad that I won’t be there to see him graduate, but hopefully his parents will face time with me during the ceremony! I am so proud of him! The pharmacy market in Utah is currently flooded with pharmacists and my husband has not yet been able to secure a job. It is even more difficult since I have to stay so close to the Huntsman Hospital for so long. We are unsure of what our future holds, but we know that with the help of our family, friends and caring strangers we will be ok. My doctor once told me that cancer is a marathon, not a sprint. I feel like I can finally see the finish line, even if it is still a ways off.