My name is Jacqui Konop-Buckley and I invite you to take a look into my life... The life I never imagined could happen... but it did, and unfortunately I can't say "Welcome to Paradise!" This website is to update people on my successes, set backs, encouragements, and discouragements. Please feel free to comment in my guestbook or email me at firstname.lastname@example.org
In April 2009, I was accepted into a research study at a local hospital for weight loss. A surgeon inserted a balloon into my stomach (to keep me full therefore making weight loss easier!) Before the balloon was inserted, I had a full workup. Everything looked fine. I had the balloon in for only three weeks. As they were doing routine checkups after the balloon was inserted, they noticed that my WBC was starting to elevate. They watched it closely and on April 27th, had to take the balloon out due to my count being 32,000 (normal range is beteen 4,000-10,000). They continued to monitor my blood count for another week and then referred me to my PCP. I was not having any symptoms or problems! I went to see my PCP and he took blood in which my WBC again - this time it had gone down to 28,000! I was positive that these elevated counts were from the balloon (and I was really angry with myself for even getting that procedure). The doctor said that he didn't think that there was any relation to the balloon and the WBC (I still thought he was wrong!). I still wasn't having any symptoms (other than joint pain - which I thought was from the Wii!) Three days later, he checked again and my WBC went up to 38,000 so we knew there was definitely a problem. He referred me to a hematologist at Jefferson Regional Medical Center to get another opinion because he wasn't sure.
I went to the hematologist on 6/3/09 and he looked at the various bloodworks and the blood smear and said that it was leukemia. My mom had gone to the appt. with me and we still had doubts. More tests needed to be done - I should have symptoms - something. He noticed in the previous bloodworks that I had were immature cells which signal cancer. He said that it was either Acute Myelogenous Leukemia (AML) OR Chronic Myelogenous Leukemia (CML). He told us that if I were going to have one, pray that it be the CML because it is easier to treat. I went back on 6/4/09 for a bone marrow biopsy (which I was petrified...) The doctor confirmed that in the marrow he saw leukemia (Leukemia clumps together making it a googy white form when the marrow should be red), which made it difficult to get what he needed for the test. They were unable to aspirate ANYTHING at all, even after trying three times. Rich, my parents, and I went back with me on 6/9/09) to discuss the results, course of treatment, etc.
The specific diagnosis came back as Myelodysplastic Syndrome which is very rare in young people and there has been little research done. A deletion of the Philadelphia chromosome has made it even more difficult (5q-: Five Q Minus) It was something to hear an oncologist of 20+ years (who even treated my mom!) throw his hands up and say "I've never seen this..." and admit that he has no idea how to even begin to treat this.
I was then sent to Hillman Cancer Center where I have the most amazing doctor, Dr. Agha who has helped me fight this battle every step of the way. Dr. Agha was also the first to discover that I was pregnant. I had to terminate my pregnancy at 7 weeks, 1 day which has been one of the most heartbreaking things I have ever gone through. After five months of oral chemotherapy (from July - December), I went finally went into remission in February 2010!! Sadly, this only lasted 57 days.
Then it was discovered in another bone marrow biopsy that the MDS had turned into Acute Myelogenous Leukemia (AML). It was also discovered that I had tumors growing on the thoracic part of my spinal cord. I began an IV chemotherapy regime of Idarubicin and Cytarabine (standard for AML) which was to kill off the leukemia and put me into remission. After this, we decided that the best option would be to have a stem cell transplant (SCT). I entered the hospital in late July and began another chemotherapy regime which was Busulfan, Cytoxan, and Methotrexate.
My donor ended up being a 34 year old female. Since the process is anonymous, I don't know anything about her, and will not know until one year after transplant! She was able to donate 22 million stem cells! Since I only needed 8 million, we were able to freeze the other 14 million in case future use is needed.
I had my stem cell transplant on August 5, 2010 and engrafted very quickly! My counts are all looking pretty good and I am feeling good. I do take a lot of medications which include: anti-virals, ant-irejection, steroids, and anxiety medications. The doctors are very careful to check my skin, gut, and liver frequently because of Graft vs. Host Disease which is very common in transplant patients. I go to the transplant clinic three times per week to make sure that everything is okay, get weekly spinal taps, and monthly bone marrow biopsies.
I invite you to read my journal, share my experiences, and be as hopeful as I am!