Sunday, January 20, 2008

Our Story

Hello and welcome to our blog and our story. My name is Heather and I am the wife of Kyle, severe aplastic anemia (SAA) and Peripheral Blood Stem Cell (PBSC) Transplant Survivor. His diagnosis and subsequent transplant were the most challenging events of our lives. Yes, ours. If you are a caregiver, you are included. If you are a mother, father, sister, brother, friend, co-worker, etc. of someone who has AA, read on. There is hope. There is always hope. This first blog entry is from my perspective, the primary caregiver. Later blogs will come with Kyle's perspective. We hope this helps even one person out there. We would have loved a forum like this during that first, tremendously difficult year. The closest thing to a blog for me was e-mailing far away friends. I wish I still had those to read now. We ached for someone to talk to, to share the dark tunnel of uncertainty and unfairness of this disease. We said one day if we could help, we would. We were on that uncertain side once, now there is less uncertainty for us. We hope to help anyone through that dark tunnel and be a little light of hope on the other side. We understand.

Kyle was diagnosed on September 1, 2004. I remember vividly the 40 mile drive in almost total silence while holding his hand. It was the day after one of our twin boys had been discharged from occupational therapy. He had many struggles in his first year and was just starting to walk. We felt as though were just coming to the end of one challenge and BAM! One chapter closed, another opened. Sitting in the doctors office, again holding hands, he gave us the news. It wasn't leukemia, it was aplastic anemia. In the space of a moment I went from fear to relief to fear again. As I let out a sigh of relief about the leukemia, I thought "anemia, that's not fatal and it's treatable, right?" As soon as I was done exhaling, the doctor said "much of the treatment is the same."
Odd, I don't remember telling our parents. I do remember crying a lot. It hit me really hard. I knew everything about our lives was about to change. Unfortunately and fortunately I am a health care worker. I am a physical therapist assistant and at the time, worked in the same hospital where my husband received treatment. Four floors down on the neurorehabilitation unit to be exact. I had seen what cancer and all of its treatments could do to the body and brain. I was so scared. I knew this would be a long battle. I knew this would take a tremendous physical , emotional, marital, spiritual and financial toll. It hit me all at once. I had this strange desire to want to get on a plane to anywhere. Somewhere we could escape this new reality. I couldn't sleep, but desparately wanted to. When I did sleep and awoke, I would think for a brief moment we were in a dream. But, we weren't. Kyle at that time was so incredibly positive. I was so worried and anxious I felt like I was shaking from the inside out. I wanted to scream how unfair this was. I wondered, "why us, why me?" Hadn't we had enough challenges in the previous year? Our then twin boys were 13 months old. They had been born at 30 weeks and lived the first two months of their little lives in the NICU, ironically enough at yes the same hospital where I worked and where Kyle received most of his treatment. I had learned how to place an infant feeding tube in order to get Jaxson, one of the twins, home from the hospital. Looking back now, that must have been preparation for learning to mix TPN, administer home IV's and clean central catheter insertion sites weekly for 2 years.
Kyle almost didn't make it to transplant. After immunosuppresive therapy with ATG failed and no return of white counts, persistent neutropenia, resulting near fatal fungal pneumonia and oncologists who didn't want to bother,or didn't think he would make it through a transplant, he had a matched unrelated peripheral blood stem cell transplant on November 31, 2004. It's been over three years now and we are calling it a success!
Though a success, it certainly hasn't been easy sailing since the transplant. Just this past year he was hospitalized seven times with a variety of illnessess ranging from central line infections, blood clots (one in his jugular vein) to respiratory and gut infections. Believe it or not, life seems almost normal.
Please feel free to comment or simply vent your frustrations, someone will be listening and will have felt the same.

My Best to You,