My symptoms worsened over last weekend and I was admitted to Hopkins on Monday. They preformed another MRI and the lesions have grown. My doctor suggested taking Avastin, a drug that blocks blood vessel growth. The drug has been used in patients that had radiation treatments for brain cancer. It seems effective in the brain cancer patients and they even show improvement. I took my first dose in the hospital and was discharged. We wait 2 weeks, do another MRI, and hopefully it has worked.
The only pitfall with this drug is the cost ($10K) a dose and we don't know if insurance is going to cover it. If it works I might need 6 doses - we really don't know since I am the first person ever to take this drug for radiation myelitis.
Meanwhile I am finding life frustrating at home. Our house is a split level and not made for a person that needs a walker and wheelchair. I am supposed to limit my trips up and down the stairs so I am spending a lot of time in my bedroom then coming down at night for dinner.
Thank god my sister was in town all week while I was at the hospital - helping with the kids. Dave is wonderful, helpful, and very understanding. Things are difficult right now but hopefully we can get beyond this stuff soon and life will settle back down.
Subscribe to:
Post Comments (Atom)
4 comments:
Heather, you are the strongest person I know. I can't imagine how exhausted you are at this point. I am praying for healing of course but also energy and happiness as you celebrate Alex being two and Charlotte off to school. I love you.
THINKING OF YOU HEATHER & SENDING YOU ALL OUR LOVE, THE MAIERS XXXXX
Everyone, pray, pray, pray, thank you.
I just can't believe it...I know how frustrated you must be...I hope you feel better and this drug kicks in for you. i will pray for you...lisa
Post a Comment