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Life as we know it!

Our trip to Cincinnati was good for the most part.  It started out rough. After about 88 miles on the road, Bo was over being in the car.  So we had to change-up some stuff, let’s just say we made pretty good timing considering my child.

Monday we hung out, went to a few malls, did a little school shopping.  Our wonderful friends, the Karns, who live in Columbus came down, Monday afternoon and spent their vacation with us!  It was so nice to see them and our kids loved spending time together.  Tuesday we spent the day at Kings Island, even though it was SO HOT! Bo and Brookie only spent a few hours at Kings Island it was way to hot for Bo, so my father in law took them back to the hotel (so nice of him). Johnny and I spent the rest of the day on a ton of rides, then we headed to the water park, while Leksi and John got a fast pass and rode roller coasters all afternoon.  I was a great day!

Wednesday we were up and ready to go, the hospital was about 18 miles from our hotel so we headed out a little early, good thing we did because the hospital was HUGE. I mean HUGE, it was crazy! We got to our room and a few people came in and we talked about the process which my child is now in.  The “BONE MARROW PROCESS”.  We went over all kinds of things, we got to tour the bone marrow floor, that was scary and very surreal. Once Dr. Marsh came in we jumped right in on our course of action. In her medical opinion said Bo isn’t ready for transplant. He is a very difficult kid medically and she is worried (which we have heard before) that his body will reject the new bone marrow.  With that being said, she proceeded to tell us that there is a 20% mortality rate in cases like Bo. Well, John and I are not willing to take that risk right now!

Our plan of action consists of this:  8 months of IVIG (immunoglobulin therapy) which is like a blood transfusion every 4 weeks through his port, except its boosting his levels and his immune system. It will go through his port and sounds like it’s not a big deal- BUT- we have to get insurance to approve it. Don’t even get me started on insurance.  Last year from Sept 1-Mar 1, Bo spent a total of 50 days in the hospital which cost them around $749,000. If I were an insurance company I would approve IVIG BUT who knows!?!  We will know in a week if it’s approved. All in all his transplant is on hold. It could be 1 month it could be 15 months, only time will tell. I hope insurance approves it quickly, I fear the flu season will be a rough one and I am not ready for that.

These past few weeks have been incredible for me and my family. The support we have received is mind-blowing and pretty amazing.  I can’t say thank you enough for everyone’s prayers, support, and words of encouragement.  We are so blessed. …


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July 23, 2012 - 10:32 pm

Joyce Payne - I am so happy for the whole family that this visit is over and now you all can take a new plan of action. Everyone is praying for all the family. I wish you love and I hope you all will find some peace from what has been decided. Love you all! Joyce

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