First communication with Minnesota......

We had our first communication with the Minnesota team today. Patty called first thing this morning. She is the Bone Marrow Transplant coordinator. We had a good long chat and she got a few of my questions answered. She was calling to just touch base with me and to let me know that they are getting the ball rolling on their end. She told me they have communicated several times with Dr. McManus at Primary Children's. She said that Primary's has been great at getting all of Ariauna's information faxed over to them. She wanted to let me know that they are just waiting for an approval from our Insurance company to go ahead with a consultation with the bone marrow team over there. As soon as they get that approval, they will schedule a time, probably in the next couple of weeks to have Jerry, Ariauna and I come out to Minnesota to meet with the bone marrow doctors, their nurse practitioners, the social worker, the genetics doctor and a few other staff members. They said it will just be a one day visit at the hospital. So most people fly out the day before and fly home the day after. While we are there, they will give us a tour of the hospital, and hopefully we can get a tour of the Ronald McDonald house too. We will get a lot more information and questions answered at this consultation. Hopefully they will still continue to move forward as quickly as possible and get this done soon. Patty was very nice and said they are so excited to welcome us and can not wait to meet Ariauna and help her with her needs. We talked a little bit more about the Ronald McDonald house. They say on average, someone who is coming for a bone marrow transplant stays approximately 147 days. So if that is the case, we will be there longer than 3 months. We looked up pictures and stories online about the Ronald McDonald house and some of the guests. We also talked for quite awhile about all the testing of the major organs. Before they do the bone marrow they will have to test all of her major organs (heart, liver, kidneys, ect). So I asked her about that. They will want to do all those tests at that hospital just before. So Patty explained to me that we would come out at least a week in advance for Chemotherapy and so we would have to come out even a few days before that to do all the other testing. So from the sounds of all this we could easily be in MN for 4-5 months. Who knows! So now we just sit back and wait and hopefully in the next few days we will hear about scheduling the consultation.  As for Ariauna, she is excited to get to go on a plane, but is very nervous about being away from her daddy and her brothers and sister that long. I am taking one day at a time, trying to focus on the positive things. Now that I have had a few days to let the fact of going to MN set in, I am feeling more and more like this is going to be the best thing for Ari. Yes it is going to be hard on all of us, yes it still breaks my heart to leave my family and friends and my whole support system at home. But I have been doing lots of research and honestly in my heart I know this is the best place for Ariauna. From what I have been told there have only ever been about 200 cases of Fanconi Anemia and the University of Minnesota Hospital has taken care of 171 of those cases. We are blessed that the doctors at Primary's knew this would be the best place for her.  I still continue to be amazed by people all around me. I have had numerous people emailing, texting, stopping by to show their love for us. We have had things left on our porch, people trying to make this nightmare of ours a little easier for us. We still continue to have people all around us offering to help with the fundraisers, businesses donating things, sweet people in my ward planning a "Love Chain" to help our family while we are miles and miles apart (more info to family and friends about this Love Chain coming soon). My heart is so full and I have so many emotions all day every day running through my body and soul. I can feel just fine one minute, and in tears the next. I can feel so down and low and depressed one second and then feel the love all around me that helps me back up this climb I am facing. May you all know from the bottom of our hearts that each and every comment on the blog, text, email, hug, tears, prayers, thoughts, are helping us to make it through each and everyday!  May God continue to bless each of you for your countless acts of kindness in my behalf and my families behalf. Hopefully, I will have a new update soon!