I am a couple of days late in posting, but after reading you will hopefully understand why.
Friday – I am at work when my cell phone rings. It is Chicago and my heart just about stops. It’s too soon, they changed their mind, insurance denied right away…. Well. It ends up that it was the billing department. They needed my social security so they could submit the request to insurance. OK, I calmed down a bit and went on with my day knowing it should be a month or two before I hear.
Monday AM – Rosemary has been running a fever for 2 days now and I make an appointment for her to see her pediatrician. Fran (my MIL) and I are driving her there when I get a call from Aetna. I return the call knowing that she needed some information. My caseworker (who is now referred to as my Fairy Godmother) said she was just calling to tell me that I was APPROVED FOR A STEM CELL TRANSPLANT! What? Fran and I burst out in tears utterly confusing this poor woman. I swear I made her repeat it like 5 times. Then she tells me that my plan will cover up to $10,000 in travel. WHAT??? My parents are in Las Vegas, yet I’m the one that hit the jackpot. How can this be? We get to the pediatrician and call my parents. Rosie tells them I was approved. They freak out, I freak out, Fran freaks out and now we have to go into the doctors office. We make it, but poor Rosie has a virus and it will most likely be a long week for us. I get home and call The nurse at Dr Burt’s office. She thought I was only approved for the evaluation. So she went back to the finance team and I sent her the approval letter. She calls back and says we are a go for pretesting. I ask the dreaded question… When will I know if I will be treated off trial (go right to transplant) or on trial (randomized.. 50% go to transplant after pretest and the remaining 50% go to the control arm and are treated with medication. The control arm patients will get transplant WHEN they show signs of disease progression). She said I would hear after pretesting. Both are good, but obviously, I want to get the transplant as soon as possible.
Monday Afternoon – The nurse calls back about scheduling. Tells me she is going to get me in ASAP, but needed some info about my medications. We talk for a while and I ask her if I pack assuming I am going right to transplant. She was confused and I said.. If I go to pretest and then get control arm, do I just go home. She says “Colleen, you are off trial. I thought I sent you an email”. No, but who cares. It is happening. I will beat this disease that has crippled me in less then 2 years. I am going to Chicago…. And probably soon. I asked her what timeframe we are looking at and she said she was still trying to coordinate so she would email me Wednesday. Dream scenario come true.
There is no medication washout period for Copaxone and IVIG, so I will get treatment right up to travel in the hopes I stay flare free. It is so surreal. I am overwhelmed at all the love and support my friends, coworkers and family have shown me. It is so comforting when dealing with the unknown. I am blessed to work for and with people who truly care about me and my health, that makes a world of difference.
For now, I wait for a scheduler as I recover from a very hard IVIG treatment this week. Those of you who are my adoption friends know, we can wait like no others!