A note to the reader: make sure you have a cup of coffee or diet coke in hand for this one - you're going to be here a while!
It seems that every time the phone rings, the caller ID comes up Memphis, TN. Over the past three days, we have dealt with people at St. Jude on several different fronts. The research coordinator talked us through the basic logistics of coming to St. Jude. Dr. Wetmore talked us through the logistics of the clinical trial. The travel coordinator helped us arrange our flight, shuttle, and housing. The business office got Shannon registered as a patient and issued her Medical ID number. The business office called back to verify all our information. The research assistant called back to make sure all of these things had been done and that we're ready to come. An email received tonight included an appointment itinerary and confirmed all of the details. We are quickly learning that this is how St. Jude's operates. They make sure everything is taken care of. Having a life threatening childhood illness is bad enough, you don't need to worry about the details...
Our call from Dr. Wetmore provided a little more clarity about the trial protocol. While we discussed the ins and outs of this trial, we also discussed the fact that 28 days in Memphis would mean being away from home at the holidays. Dr. Wetmore reassured us that she will make every effort to allow us to fly home for the Christmas weekend. We told Dr. Wetmore that high on Shannon's wish list would be a pass to come home for New Year's - that's when the Rebels will be playing in the Stillwater Tournament. Dr. Wetmore gets that. She spent some time on staff here at Mayo and while she was here, her son played youth hockey...
Dr. Wetmore explained that the 28 day time frame is at the request of the FDA. This is a drug that is not yet approved, and patients must be closely monitored. But, Dr. Wetmore is obviously very familiar with the care that Mayo provides and as it turns out, she's also familiar with Dr. Rao. While Dr. Wetmore was at Mayo, Dr. Rao was a fellow. Dr. Rao later worked in Dr. Wetmore's lab. There is a chance that if Shannon is tolerating the drug easily, we may have some latitude to do more of the protocol at Mayo. Not getting our hopes up, but food for thought...
So, here's what we know - we leave Monday morning first thing and when we get to Memphis the shuttle will take us straight to St. Jude's. Shannon will have a new patient assessment on Monday afternoon and meet the team, including Dr. Wetmore. Tuesday there will be lab work, consults, and a patient services orientation. Wednesday morning brings a pharmacy consult and then a baseline MRI. If everything goes well, Shannon will start the new drug on Thursday.
We have dotted a lot of i's and crossed a lot of t's, but we are still working out our housing situation. We know that we will be staying right on campus at Grizzlies House (named for the local NBA team) for the first few days. This allows us to be close by while we have lots of appointments and consults. After that, St. Jude's will provide housing at the Ronald McDonald House. But, Shannon is apprehensive about this for two reasons. One, Shannon is hoping that some how, some way, we can find a place to live in Memphis where Sunny the Wonder Dog can join us. Even three weeks away from her sounds like too long to Shannon. Grandma and Grandpa Harkins are ready to bring us our dog and our car if we can find the right situation.
The other reason Shannon is apprehensive about Ronald McDonald is this: she told us, she doesn't think of herself as one of "those" kids... i.e. a kid with cancer. Call it denial, call it coping, but it's been working for her. If we can help this feel more like an adventure and less like a trip to the hospital, we will. But obviously, at St. Jude's everywhere you turn, there will be "those" kids and we need to help Shannon and Erin prepare for that, too.
We picked the girls up from school today and they had gifts and cards from teachers and friends. It was a bittersweet day at Willow Creek as they celebrated, yet said goodbye. Goodbye for now. The outpouring of support is uplifting and people have been coming out of the woodwork to wish us best of luck on our journey. There have been so many offers to help that if we leave tasks behind, or forget something, someone will pick up the slack. I'm %100 confident of that and that's making it easier to get ready to go.
So, all the nuts and bolts are taken care of, and that just leaves us with the feelings and the emotions and the reality of it all. I find myself needing to temper people's enthusiasm about this next step. Yes, we are taking action and yes, St. Jude's is a wonderful place and yes, we need to be hopeful. Yet the odds are long and the outlook is bleak. There is no magic elixir and Shannon will not come home cured. We are only headed to Memphis because the treatment that worked for a while is no longer working. But Shannon is ready to keep fighting. So, we will take a leap of faith and hope for results. Shannon will try this experimental drug and hope that it becomes the next thing that is used to treat brain cancer. We hope for response and deadening of cells. We hope this can prolong Shannon's life. We hope that Shannon can return home to the friends and teammates she is leaving behind and feel good enough to enjoy some more time with all of them. We hope ...
Way back in May, local TV station KTTC did a story on Shannon and in it she said she hopes the doctors will learn something from her case and she hopes her life means something. All the questions that seemed impossible for Dan and I to answer about what is the next right thing to do have gone away. The four of us all believe the next right thing to do is head to Memphis. Shannon wants her life to mean something to someone. It already does, little girl, it already does ...
