More to come….

We haven’t posted in months and here we are posting twice in 1 week! If we haven’t said it before, we should point out how awesome it was to have Uncle Matt doing this daily when Peter was diagnosed and in the thick of the battle for soooo long… amazing gift! I don’t have a knack for writing so that, combined with the normalcy (??!!) in which we are living, are to blame for our serious lack of updates!
We met with Dr. Greg Yanik at the Univ of MI Mott’s Childrens Hospital yesterday and he is a great man. He took 2 hours to talk through Peter’s history (after examining Pete & bringing him down to the playroom), which we really appreciate because we’ve done some moving, and our worst fear is being somewhere where they don’t know his lengthy, complicated history, or get him on track for continued scans and follow-up. Peter did tell Dr. Yanik (in a nice way) that he’s not a Michigan fan, but when Dr. told him his daughter runs track at Notre Dame, and asked if he would he ever consider cheering for them, he shrugged his shoulders and said, “ummm, maybe!” I guess Pete knows how to win over a doctor. Overall, our conversation was very positive and he feels Pete is in a very good place. Of course you don’t ever get complacent with this disease, so here’s the plan:
Pete will have lots of tests next week, including MIBG, CT scans, Hearing Eval, Pulmonary Function Test, Echocardiogram over a 3-day period. We will see Dr. Yanik in 4 weeks, and every 2 months following that. Peter will have scans every 6 months for 2 more years, adding the brain MRI at next visit, since he is still suffering from migraines. Once he reaches 5 years NED (no evidence of disease) – 2 years from now – he will transition to the Long Term Effects team, which will involve Neurology, Endocrinology, Pulmonary, etc. Needless to say, the 1 hour 15 min drive to Ann Arbor is a heck of a lot less stressful for Peter. We’ll see how he handles scans next week, but hopefully he won’t have the same issues he has had surrounding our trips out east over the last few years.
Peter is doing fantastic and it a joy to watch him with friends, playing flag football, hockey, and doing well in school. Please continue to keep our friend Mary in your prayers as she continues to gain strength after having a 2nd transplant for secondary leukemia. She is truly amazing…
We will update when we have results, but hope everything will remain status quo around here!

6 Replies to “More to come….”

  1. Hey friends,
    You made our day this morning when we discovered two postings this week! We’ve been thinking lots about you lately and figured you were very busy and up to your eye balls getting acclimated. It sure sounds like everything is going reasonably well considering the colossal amount of change. This is great news and we are very happy for you.

    We hope you enjoy your new home and that everything is moving to a new normal. We are looking forward to this year’s Halloween pictures. What are the kids going to be this year?

    You all are always in our thoughts and Pete, we’re pulling for you.
    Go Bowling Green!

    Terry Forbord and Rebecca Hopf
    Shorewood, Minnesota

  2. Hello Eigner’s–

    So glad to hear from you guys. Sounds like things are going really well–so happy! We think of you often–let us know if you get to this area of the woods in the future. Would be fun to get the families together!


  3. Great to see an update. Had been chekcking but figured no news is good news! 🙂 Happy to hear that Peter and you all are doing great. We will keep Pete in our prayers for good results with his tests. Sounds like Ty has a dream job (coach Elli is jealous)! The move sounds like it was meant to be with moving closer to a great hospital that makes it much easier on Peter. Take Care
    Steve, Glenda, Josh, Meg and Jake

  4. Thanks for the updates. You know that I’m here if you need me to post.

    Peter has kept me idle through his strength and attitude, both of which have been buttressed by those of you reading and posting on this site. He put the enemy in retreat and gave me no subject matter, other than to say he’s doing great, day after day after day.

    Posting updates never felt like a burden, but let’s hope and pray I’m never called to action again!

  5. Hello Eigner’s,
    We are glad to hear that the move went well and the Peter and gang are doing well! Glad to hear that Peter continues to thrive. You continue to be in our thoughts and prayers.

    Take Care,
    Luke, Emily and Ryan Johnson

Leave a Reply

Your email address will not be published. Required fields are marked *