Back to NY (again)

Wow! Has it been 4 weeks already? Peter & I will take to the skies again early Tuesday morning. After the scare with the liver lesions, they want to see him again and repeat most of his scans this week.
We will start with a clinic visit on Tuesday, then Wednesday and Thursday will be full days with an ultrasound, MIBG scan, CT scans, and another liver MRI. If all goes according to plan, we will fly home on Friday.
It is amazing how much of a rollercoaster the last month has been. We are feeling good about where Peter is at. We will find out what exactly the lesions are and if any treatment is required, and of course, more than anything we want to hear that Peter is still NED (No Evidence of Disease)! It sort of feels like we’ve stepped off the rollercoaster again. We would like to stay off the rollercoaster please!! This has been a very real & sickening reminder of just how elusive and nasty this disease is.
And we ask that you would join us in cheering on a couple of our dear friends. Erik (caringbridge/mn/erikludwinski) was diagnosed at the age of 6, then relapsed at 20 and again at 21 & has been in treatment but stable for 3 years, while excelling at Bemidji State, volunteering, attending camps & being generally about as busy as a guy can be! His disease has progressed and they will now be in NY this week seeking treatment options. And Mary (caringbridge/marycatherinevirnig), another young adult, who was diagnosed the same time as Peter, is a phenomenal person, also from an amazing family, has been at war with this disease for 3 straight years, while going to college full time at UW-River Falls. She has scans this week at the U of M. It is one thing to fight this disease as a young child, when you don’t fully grasp what is happening, how much you are missing out on, etc. But to be in the thick of it as a young adult and handle it with the grace these two do, is very inspiring.

4 Replies to “Back to NY (again)”

  1. Praying for you (and all your friends with this nasty disease) … Good luck … hope we hear nothing but good news the rest of the week. Mary & Gary

  2. You and your friends are in our thoughts and prayers. So much spirit and fight to have to battle this over and over again. We wish you the best in New York and pray for you daily.
    Love, Steve, Glenda, Josh, Megan and Jake

  3. Dear Erika, Ty, Peter, Ellie and Kate,

    We are thinking of you every day and hoping that Peter’s tests this week yield positive results.

    Celebrating you all,

    Terry and Rebecca

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