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!