BENEFITING: 3 LITTLE BIRDS 4 LIFE
One morning I woke up with excruciating side pain, chest pain and blurred vision. My husband took me to the ER and I was admitted October 9, 2012. Preliminary tests showed I had a high white count, low platelets, enlarged spleen, and liver enzymes that were extremely high. They thought I might have a virus similar to mono but needed to run more tests to be sure. I was very anxious for a diagnosis and to be back to my normal routine as my best friend was getting married October 13,2012 and I was to be her matron of honor. I was allowed to go home Friday the 12th but wasn't able to make the wedding as it was a destination wedding in Northern WI. I was crushed and to make a hard day even harder I received a call that Saturday morning from the Oncologist telling me I needed to come in to discuss some test results.
I had my mom, dad, and sister meet my husband and I at his office so we could face whatever it was he was going to tell me together. The preliminary diagnosis was Acute Lymphoblastic Leukemia. The room was filled with silent tears as I wanted to know the first step in beating this disease. I was already familiar with blood cancers with my efforts as part of the Leukemia and Lymphoma's Society "Team in Training" just that previous April I had run the STL GO! Half Marathon in honor of my sister's late mother-in-law that last her battle almost a year ago and my husband's late grandfather who just recently passed a month ago.
There are no words to describe the feelings my family felt with this news. I felt like God was already mourning with us as it was raining outside and a dismal day. We spent the afternoon together as I was to be admitted to Froedtert Lutheran Memorial Hospital the next day. I was able to set up a Skype date with the newly married couple and the wedding party. They anxiously asked me if I knew anything yet and I couldn't bare to tell them the news I just learned only hours before. She was a gorgeous bride and everyone else looked fantastic. Oh how I longed for my worries to only be how my speech was going to turn out and if the rings I made the bride and groom fit correctly. Even though I wasn't there in person I was there in spirit because of my craftsmanship in creating their wedding bands.
The next day they confirmed the diagnosis of Acute Lymphoblastic Leukemia, but there was a twist. I had a chromosome mutation known as the Philadelphia Chromosome, PH+. Two chromosome (BCR/ABL) fuse together and this is what causes the cancer to grow. This meant I would need a Bone Marrow Transplant. My chemotherapy regime was HYPER-CVAD. I went through 4 complete rounds. Induction was a month long inpatient stay and the other inpatient stays were a week long. All this while my husband, family and friends moved us from our place in Kenosha to our new house in Pewaukee and finished up renovating what we had started. It warmed my heart we had so much support with moving but it also felt like I was missing out on a really big milestone, our first house moving in together and replacing things to make it our own. I was missing out on because I was battling for my life. My sister turned out to not be a match for the transplant and they continued to search through the marrow registry. A couple weeks before Christmas I received a phone call with the news of a unrelated donor match. We were matched a full 8 out of 8, same blood type and was CMV negative. I also had a back up donor that was also matched 8 out of 8, same blood type but was CMV positive. It was a glorious day and my Dad happened to be hanging out with me and we celebrated with a hot chocolate for me and a whiskey for him. What a fantastic Christmas present, the gift of new life.
I was admitted back into the hospital late January and received conditioning, high does chemotherapy for 3 days and 6 sessions of total body irradiation to completely wipe out my bone marrow to make room for my new marrow to en-graft and grow healthy new life giving cells. It was a very long arduous road waiting for my new cells to come in. A little over a month I was able to go home. Around day +85 I had a bone marrow biopsy to check out my new cells. Everything had been going fairly well with some normal bumps but with these results came the scary news of a relapse on a molecular level. The PH+ chromosome was detected with a very small percentage. It was devastating. My transplant Doctor and my HemOnc Doctor assured me everything was going to be okay because of medications called Tyrosine-kinase inhibitor(TKI's) I was to start back on Dasatinib and they would run another test on my peripheral blood in a week. Another couple weeks went by waiting for results and this time we were over joyed when we heard nothing was detected you are off the charts in a good way! That brings me up to present as I am day +129. I have a long road to recovery another 1-2years before my immune system is fully functioning. Frequent clinic visits and lab draws along with being vigilant of any infections as I do not have a means to fight off anything even the common cold.