Tuesday December 6, 2011

We want to keep you all updated on this new stage of our journey, so we will do our best to write a nightly blog. Things got better here today for us. After a long travel day Monday and being overwhelmed by our new surroundings last night, today started off rough, but steadily improved.

First on the agenda today were labs for Shannon. A blood draw - something she's done so many times over these past 9 months - for the first time ever left her feeling very woozy. An inauspicious start, to say the least! But, some orange juice and some TLC from the nurses at the E clinic (that's the name for the neuro-oncology clinic) helped her to get the color back in her skin and the sass back in her personality. We worked through medical histories, vitals, neuros, etc. By the time we saw the social worker, Shannon was feeling good enough to rip on both Dan and I. Our social worker here is a southern belle named Jennifer. I think the only thing she and I have in common is our name! She didn't quite know what to think of our yankee dialect or straightforwardness. She was doing her intake interview, poking around the edges to see how well Shannon, and we as a family, were dealing with things. Shannon told her we lay it all out there. We're honest with our kids and they are honest with us - maybe to a fault. In other words, we weren't looking for much help form her and we pretty much told her that!

Truth be told, services like a social worker might be completely new to a lot of patients who come here, but we've been fortunate enough to have that type of support back home. We realize we shouldn't take that for granted. Being here for just over 24 hours, it's obvious to see that people come from all over the country and from all walks of life to this hospital to try and save their children.

Our last appointment of the day was the best one yet. We met Dr. Wetmore and connected immediately. She and Shannon talked about hockey, they talked about teachers at Willow Creek, and they talked about the staff at the Mayo Clinic. Lots of comfort in the familiarity that Dr. Wetmore has with the journey we have taken to get to this point. She spent 10 years at Mayo, so she understands us yankees!

We are making progress on some of the logistics here. Tomorrow we are hoping to finalize some housing that will allow Sunny (oh, yeah, and Grandma and Grandpa) to join us this weekend. Dr. Wetmore also is planning to let us return home for a long holiday break - hopefully coming home from Christmas through New Years - then returning the first week of January to complete the 4 week protocol. We are being given this latitude because of Dr. Wetmore's familiarity with Dr. Rao and Mayo. The labs and check ups we would be doing here in Memphis that week will instead be done at home by the Mayo Clinic. How lucky are we that we happen to live in Rochester? Unbelievable.

We finished our night off with a family dinner here at Grizzlie House. Various corporations sponsor these free events and tonight it was southern comfort food provided by Gus's Famous Fried Chicken. This is stick to your bones kind of food - fried chicken, grilled cheese sandwiches, mac and cheese, bread and baked beans. Oh, and a little cole slaw if you need something green on your plate! It was delicious, and to top if off, the in house movie they were playing was Miracle - Shannon's favorite movie about the 1980 Olympic men's hockey team. Ironic, to say the least.

Tomorrow brings a lengthy MRI for Shannon. Advanced imaging to look not only at the tumor, but at the nerves surrounding it and the blood pathways leading to it. After that, we will meet with Dr. Wetmore to look at results and sign off on participating in the clinical trial. Shannon should receive her first dose of the drug on Thursday. Time is ticking as Shannon continues to be more symptomatic each day.

Thanks to all of you back home who are keeping tabs on us and supporting us on this journey.