Our Week Ahead Around the Country

Good morning and happy Wednesday everyone!  I hope you are enjoying yourselves and all those around you.  When we set out on this journey back in 2009, we thought it best to get as many opinions and specialists we could in our corner to conquer this disease.  We continue this thought process to this day.

With that said, we have a busy week of jet setting around the country.  I miss my wife and two boys immensely already, but I know this is for a good cause.  Hopefully we can get more options, and we pray each facility and center concurs with Sparrow’s findings in regards to my latest PET scan.

First on the list is Dr. William Tap at Memorial Sloan-Kettering Cancer Center in New York City.  Sloan-Kettering is a world renowned cancer center, and we were lucky to get an appointment last minute.  Dr. Tap is an oncologist who specializes in sarcomas, and he is the head doctor of his department.  He oversees and conducts new and upcoming cancer research in all areas but especially in my rare disease.  We have heard nothing but wonderful things about him, and very much look forward to seeing him.  Our appointment is today (June 19, 2012) at 230pm.  At this appointment, we are just expecting to meet with Dr. Tap.  However, as history has shown us, he may or may not add additional consults with more physicians.  I will share his opinion, suggestions, and outlook as soon as I can.

We will be staying in NYC tonight (Tuesday, June 19, 2012) and departing for Chicago tomorrow (Wednesday, June 20, 2012).  We decided to stay the night in Chicago, and depart for Mayo Clinic in Rochester, MN Thursday morning (June 21, 2012).

I can not speak for Sloan-Kettering yet, but Mayo Clinic is the pinnacle of hospitals in my opinion.  We have yet to find a hospital that comes close with regards to all the processes you have to go through.  Their scheduling, doctors, ongoing care, support staff, facilities and treatment of patients are all second to none.  We have been going to Mayo Clinic since 2009 and do not regret it.

We will be meeting with Dr. Scott Okuno on Thursday, June 21, 2012 at 230pm.  Dr. Okuno is an oncologist who also specializes in sarcomas.  He has been coordinating with our local oncologist, Dr. Rapson, in regards to treatment and subsequent follow ups.  During our consult with Dr. Okuno, we will also be meeting with Dr. Mark Allen.  Dr. Allen is a thoracic surgeon, and is the head doctor of his department.  He performed my lung wedge resection in 2009, and is an excellent surgeon.  He will be coming to Dr. Okuno’s office around 300pm.  We will fill you on the details of these office visits when we know more.

I am very fortunate to have my mother and aunt come with me.  They come with me to every single appointment I have no matter where it is, and always ask the right questions.  It is the biggest stress relief to have them by my side, and can never repay them for everything they have done, are doing, and will be doing for us.  Not everyone can have a doctor and nurse travel with them to appointments, and I know how blessed I am.

I will be home and able to hug my beautiful family again on Friday!  As I am away from my wife and sons, not a second will go by that I don’t think about them.  Give your spouses and kids extra hugs and kisses for me this week as I am away from mine trying to get more answers.  Thank you for all of your prayers, support, kind words and generosity.  And thank you for helping to spread the word of our family’s journey.  We will beat this thing, and we will do it together.  We love you all!

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2 Responses to Our Week Ahead Around the Country

  1. Dan Sadlier says:

    Praying for you bro, asking for additional energy and that the traveling doesn’t drain you too much, so that when you get back you get some good time with your family. Keep me posted how I can be praying and if there is anything our family can do for you guys.

  2. james dean says:

    Thoughts and Prayers are there for you, and also at home with Andrea, Landon, and Logan. Ryan, on Friday the grands are coming from New Hampshire, the one’s that you put on the plane a year ago. If it had not been for them coming, you and I would have never met. It was just one of those things that was met to be. Blessings, safe trip and good news for you, your mom and aunt. Will look for further updates.

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