It has been a pretty stressful couple weeks around here-me and Sam have kept ourselves busy making TONS of decisions about Connor and his care. So I have lots of info to share.
The trip to IL to see the OMS specialist is off for now. We just don't want to put him through the possibly dangerous plane trip, until we know more about whatever this lung issue is about. Luckily, I was able to talk to them on the phone and find out what the probable treatment plan for Connor would be if we did go there.
Connor will begin Rituximab (a type of chemo) on July 23rd, next Wednesday. He will go every week for 4 weeks-for a total of 4 treatments. He will continue on IVIG (although the date is not set for that yet) He is also going to begin IV Decadron (steroids) for the next 6 months. This is given in the hospital for 3 or 4 days each month. I am worried about the side effects from all these medications-but we are at the point where if we don't do something-the OMS is going to win its battle and his immune system is going to keep attacking his brain causing even more problems for him in the long run.
We have also decided to not send him to the 2 mornings a week day school, I was so excited about him starting. Just is too risky for us, especially in the fall and winter with SO many viruses going around at the school.
More later,
Debbie
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2 comments:
Such hard decisions to make...but you and Sam are doing a marvelous job walking that tightrope between treatment and disease. Love and prayers always!
Aunt Kristi
I wanted to call you last night but I could not fine your number. I thought I saved it in my computer. If you can e-mail to me tarawoodman@comcast.net. It was so nice talking with you the another night.
Tara Woodman
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