One Step Forward, One Step Back

So we were really excited to head to the Mayo Clinic in Jacksonville this Monday. We had been told to plan on 2-3 days and were hoping for more answers. We arrived after a 3 hour drive, having packed for the whole family and getting kids to their arranged places to stay for the next few days, (not an easy task). Our first appointment was with Patient Registration, we are having a pleasant conversation as we handed the receptionist our card to copy. She looks at our insurance card and says, "Now we aren't providers for this type of insurance, we are contracted with them, but it will be considered out of network." We both froze and said, "What????" When I had scheduled this appointment over 2 weeks prior, my first questions had been about being in-network, etc. They had assured me after asking some specifics about our card and coverage. So, this was devastating. She got her supervisior, I was trying to hold back tears. After some discussion and a phone call to BC/BS, it was confirmed that they would be out of network and therefore we would have to meet a $25,000 deductible to have our insurance pay anything. We finally decided to at least see the first doctor and get a second opinion and get some questions answered and then have to move on to another cancer center. AGHHHHH!!!!

On their behalf, they were truly sorry and super sweet and accomodating, but can't change the insurance mess.

We headed up to the appointment and poor Bryan's legs and back were hurting so badly he went into one of their provided "quiet areas" to lay down and wait to be called back. A kind lady who was there with her husband had some sweet words of comfort for he and I. As we got called back, Bryan leaned to give her a hug and broke down. The pain and stress of the day came out, because a sweet stranger cared.

The doctor was wonderful. He spent over an hour with us, explaining and answering numerous questions. We felt like we understand CML better as well as know what we do next...go to an in-network cancer center and meet with the transplant center to talk about donor matching, etc. We "tough" out the side effects for three months and then they do more testing to see how Bryan's body is responding to the treatment.

We felt better after talking to the doctor, like the trip wasn't a complete waste. We took advantage of a night without kids and went and saw a movie, our first date in months! It was nice not to think about cancer for a few hours. Our sweet friends let us stay with them and we enjoyed a good visit, then headed back home today for another doctor visit and blood work. Now we wait to see when we can get into the next cancer center, hopefully it won't be too long of a wait.

A good side note is that Bryan was able to come off of the first Chemo pills, the Hydrea, on Friday because his blood counts were looking normal. Now we just pray they don't go too low, where we have to worry about him getting other infections.

As Thanksgiving approaches, we are reminded of the many blessings in our life. CML seems to be a  better kind of cancer. The future looks relatively hopeful. We have been blessed by so many prayers, well wishes, gifts and help. Thank you to everyone who continues to remember our family. We still don't know when Bryan can return to work, he is just too exhausted and when he pushes himself at all he pays for it in greater pains. I have been able to pick up a few shifts at the hospital, we are grateful I had a job and didn't have to start completely from scratch there. We truly feel blessed because of the network of family and friends. On the days when it feels like the world is crumbling at my feet, I feel the Savior's strength and the sustaining power of others holding me together.

Have a Happy Thanksgivng and Count Your Many Blessings and Let your Loved Ones Know how Precious they really are to you! You have been a life saver to us, thank you!!!!