Friday, November 20, 2009

A positive update...

We went to the doctor this past Tuesday. Sean did another cancer scan (which came back negative) and then we met with our neurologist. It was an eye opening appointment being that the doctor really has no idea how long it will take to respond to the treatments and recover, and to what extent he will recover to...but it was good for us because it gave us a realistic view on what to expect on his road to recovery timeframe. It could take weeks, months or years but Sean and I know that he will get better with treatment and physical therapy. I feel like we have had this deadline in our mind of him being better before the baby comes; it stinks but we realize its most likely not going to happen by then but it will happen with time.

Onto the GOOD news, Sean had his blood drawn and his CK levels are down to 11,000!! this is still crazy high, but Sean' levels have been as high as 37,000 through all this. He seems to always be around 30,000 and after his last IVIg treatment in September they got down to around 26,000 and we were estatic, so to have them at 11,000 is amazing! So the great news is that he IS responding, he had barely gotten his treatment on Friday and the blood test was Tuesday. So we just need to keep on with the treatments and get this thing stopped...and then start rebuilding! he is starting physical therapy today to start stretching muscles which will help - but I can't tell you how great it was to get the news that although muscle's are still breaking down...they are doing so at a much much slower rate. His next appointment and blood test won't be until December 8th, I just hope that they levels continue to go down in the meantime. Sean can't feel the improvement yet, but hopefully he will start noticing little things showing signs of the breakdown stopping. We just continue to pray for recovery, it is so nice to get good news for a first!

Thursday, November 12, 2009

FINALLY...the treatment is APPROVED!

So after over a month of fighting with Blue Cross and sending multiple appeals on both my side and the doctors side....WE WON! Sean was approved yesterday to start receiving IVIg treatments once again, he is approved for 3 months and they will be going back and paying for the September treatments! We have had many people involved on helping us get the appeals out, what finally did it is State Farm fighting on our behalf and getting him approved...thank heavens and thanks for all the help!

So Sean will get a treatment tomorrow, we just hope he responds after all of the fighting we have done. He was showing improvement from the September treatment so our hopes are high. We know it will be slow even if he is responding - and he will most likely need months of treatment to see improvement, but hey improvement is improvement and I cannot wait to know that this awful disease is not progressing every day. We have another doctors appointment at the U on Tuesday for a follow up and another cancer scan. We are still waiting to get all of the final results on his bloodwork, muscle stains, and lymph nodes - cancer is very likely with any of the autoimmune diseases we are dealing with so we need to stay on top of keeping him scanned. Other than that, no new news - just excited to actually be doing treatment again!

Wednesday, November 4, 2009

A busy past couple of weeks...and an update

I just realized its been just about 2 weeks since my last post, sadly nothing too eventful has happened with Sean. He did have his crazy intense biopsy last Thursday. We got to the U at 8:30 am, met with an ultrasound technician and she found a spot in his thigh that she felt would be a good piece of muscle to take - so she put a needle (pretty large needle) in his leg and shot a wire down into the muscle and then we were done there. The needle was only sticking out of his leg about 3 inches, I really thought we would head into surgery pretty quickly - but no, at 11:45 they finally took him back; he only had the needle sticking in him for 3 hours with no pain meds...again, he has been a trooper! So the brain surgeon then went in and removed the muscle - and we were done. We surprisingly heard back on Monday (alot faster than usual) that they did get a piece of muscle that shows the damage - but we still don't know what that means. The best treatment plan is still the IVIg which is STILL denied by our stupid insurance, the doctors office has filed an appeal...Sean's mom and I got an appeal together to send everyplace we could think of (insurance commission, President of BlueCross, etc) we finally got the paperwork pulled together and overnighted yesterday. It makes you feel better trying things, whether it helps or not we can only try! So now that we are in an appeal waiting game the doctor decided to try steroids. Sean took his first treatment this morning, they have ton's of side effects so now we will work through those, but at least its something while we get him approved once again for the treatment that was actually helping. Again, my frusteration with our stupid health insurance cannot be explained...I wake up hoping everyday for an approval, I hate how they are deciding what's best for Sean even though its not. ahhh!

So we will wait some more, some of Sean's muscle has been sent to Washington University. Some of his lymph node from the past surgery has been sent to Los Angeles, and a hospital in Oklahoma has had blood work since the beginning of August and feel that they have found and unknown antibody - so we are waiting to hear some more on that. Basically we have a little bit of Sean strung acrossed the U.S. Lets hope by the next post we have heard back from a few of these places and have our appeal won, we are definately getting less and less picky as to what constitues a good day for us anymore!

Next, I had my baby shower here in Roosevelt on October 24th - it was the cutest shower ever. My friends did an amazing job! I will post pic's later...we had amazing soups, yummy desserts and they even made homemade caramel apples for everyone. It was so cute, and it was such a fun day for me. Mayci got tons of stuff, she is pretty much set. Thanks to everyone that helped and came to my shower - I loved it!

And lastly, Kaylin and I conquered yet another year of the crazy Halloween parade here in Roosevelt. We gave out about 1800 beaded necklaces and 2000 pieces of candy!! it was a solid 2 hours and crazy to say the least. We had a ton of fun, and here is my first posted prego pic - I had ordered a larger shirt that never came...so I made what I had work, although a little snug! we had fun and were definatley exhausted by the end.

So that's that...hoping for an amazing Sean update in the near future. We know that even if we can get the treatment its going to be a slow road - but improvement is improvement and we can't wait for the day we start seeing some. Thanks again for all of the comments and calls, it really does mean alot to both of us!