Jon's Journey
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| February 2013, before my second transplant |
Let me introduce myself. My name is Jon (that's with no "h"). I am a 37 year old that was diagnosed with Acute Lymphoblastic Leukemia (ALL) on May 12, 2011. I had chemotherapy, radiation and a bone marrow transplant in both 2011 and then again in 2012-2013. On May 11, 2011 I went to the Medical Center of the Rockies Hospital in Loveland, CO to donate blood after being told at the 9news Health Fair that my Iron was high. While there the nurse told me that I had a pretty major blood problem and they couldn’t let me leave the hospital for liability reasons. They wanted me to go directly over to the ER. My wife and I spent the night at the hospital assuming that I had a bad case of the flu. That next morning, we were told by the doctor that I had a white blood cell count of 331,000. The average adult only has a count of 3,500 to 10,500 and a Leukemia patient has about 100,000. I knew it was bad.
They immediately transferred me to the ICU at Presbyterian Saint Luke's hospital in Denver, CO (about 60 miles away). They confirmed that I had Acute Lymphoblastic Leukemia (ALL) with Myeloid markers. I went to work that morning never thinking I would not return home. I spent a week in the ICU, and then after being transferred to a regular room I received several rounds of chemo and finally a transplant in August, 4 months later. Before I was diagnosed, my position with Group Publishing was outsourced to Long View Systems who gave me a temporary contract to find a new job but that contract ended the day that I was diagnosed. On top of this my wife, Laura, was 6 1/2 months pregnant. She had just graduated with a design degree from the University of Northern Colorado and was looking for a job in this awful job market. I was however grateful that Laura could spend those terrifying weeks and then months with me in the hospital and that we had the option of Cobra. Everything seem to fall in place, I was able to leave the hospital before the transplant and see the birth of my son, and we had so many friends and family gather to help us stay in our house and pay our mounting medical bills.
We had the best staff of both Doctors and nurses to get my health back and my mother-in-law stayed on the second floor of the hospital for hours so Laura, my wife, could visit me after the transplant. My brother and sister-in-law also allowed us to invade their house for almost 3 months to heal. The relapse... I had almost a year to get to know my son, spend time with my wife and enjoy everything around me when I was diagnosed again. My blood test in my routine checkup showed leuko-blast cells again. I happened to be in Missouri visiting my parents (I drove out there with Laura’s dad) when I was received the call from my doctor, so my parents drove me back to Colorado to check into St. Luke’s again. I said goodbye to my little guy, Hayden, for an unknown amount of time in Radiology while waiting for my pic-line. Nobody knows this but Laura and I were planning a thank you party for everyone who helped us along the way on my one-year anniversary of my transplant, August 19, 2012.
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| October 2012, a fever sent me to the ER |
I guess I could say that we did not cancel it but rather postponed it until I receive yet another transplant. In the fall of 2012, after receiving another round of very strong Chemotherapy, I got Pneumonia and unfortunately had to go through several rounds of antibiotics and fluids in the ICU to get rid of it. I was then diagnosed with another virus and because this was ontop of my previous Pneumonia, I had to be intubated for 5 1/2 days to receive an extreme amount of steroids to allow my bleeding lungs to heal. Then after being extubated I received several weeks of physical therapy to walk again. I came home just before Christmas. I then went back into the hospital in January to receive my last round of Chemo before receiving radiation and a stem cell transplant on March 7, 2013. My second transplant was from a different donor, and I will forever be grateful to both of them. I stayed in the hospital for another 32 days before going to my brothers house for 3 months. I am now battling the lack of strength and also lack of immune system. I have also had some GVH (graft vs host) that attacked my skin, so I am not allowed out in the sun, but I am so grateful that I get to see my son, who I spent 260 days of his two years of life without seeing. I am patiently waiting for God to fulfill his plan, but it would be nice to get through this and get my life back. The hardest part about this is not just the financial hardship (cashing in my retirement and using all of our savings) but also not being able to see my little boy.
So our situation is unique to other cancer diagnosis, because I have no to little immune system. My son, who is 2, is not allowed be in day care or around other children because of my immune system and I am not allowed to change diapers. This puts us in a pickle. I also cannot do many things around the house to take care of myself (prepare food, clean, etc.). So my wife has to stay at home to take care of me. She is a freelance designer (with a degree from UNC), who picks up at home jobs when she finds them and also does a lot of creative bags, totes, aprons, blankets, www.foxridgedesigns.com. But we have an amazing amount of medical bills even with insurance. So, while we can pay some of our basic bills, we are getting buried in debt. We are really hoping to pay off a lot of these bills so that we can move on from this diagnosis. So we are asking you to not only buy our t-shirts and proudly wear this positive message but to also tell your friends and family! Because Life is STILL good, and always will be!! Thanks for listening. - Jon
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| November 2012, Happy to be going home after RSV virus and Pneumonia |