We have more great news on Peter’s latest round of tests…. he remains “NED” (No Evidence of Disease in the Neuroblastoma world). We celebrate these milestones because we know so well how miraculous it is, and know it would be a mistake to ever take it for granted! Please, please pray for our friend Mary, who was diagnosed at the exact same time as Peter. They went through all of their frontline treatment, including transplant, at the same time. While her NB never fully cleared, she was later diagnosed with a very serious form of leukemia (NB treatment can cause secondary cancers) and went through a donor transplant this summer. She has just learned the leukemia is back, and despite persistent fevers that have had her in the hospital for a week, she has chosen to go home with her family. We are devastated for them, for all they have endured, to end up with these results, so we want nothing but a miracle for Mary! Please keep her in your prayers…
We hope you have a Happy Halloween… I don’t know how the weather is in MN today but it’s probably a bit warmer here in Ohio! Peter is a ‘rapster’ (??!!), Ellie is Dorothy from the Wizard of Oz, and Kate is a bunny rabbit. Even though we are on candy overload already, they are excited to go trick or treating tonight. Thanks for checking in… we will see Dr. Yanik in a couple of weeks for follow up and expect to be there every 6 months for scans. Take Care – Ty, Erika, Peter, Ellie & Kate
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!
Next new chapter
Hello all, sorry for the delay in posting. As you can imagine we have lot’s of new and exciting things to report. We are settling in to our new routine in Bowling Green. The kids are all doing great and really like school and the new neighborhood! Peter and Ellie attend St. Al’s Catholic school and both have great teachers. Kate is going to pre school everyday and is having a ball. Erika is getting is still working for Tradition and is getting used to working from home. And I am getting used to college hockey and really enjoying the challenge.
Today, Peter, Erika and I are going to Ann Arbor and the Children’s Hospital there at the University of Michigan. This will be his first appointment/meeting there so we are excited to meet the new Doctors there, although we are all a little nervous because this is going to be new for all of us. Peter has been doing great, still growing like a weed. He has had a great appetite and his energy level has been really good. We think we will meet the new Doctor’s today and probably set up a time for his next round of scans and tests. The great thing is that Ann Arbor is just over an hour away, so it should make the visits much easier than going to New York. On a side note this past weekend, we played the University of Michigan in our opening series, and lost both games 4-1 and 4-2. They are the #4 team in college hockey and are very good. Anyway, Peter said to Erika “is it OK if I tell the Dr. that I don’t like Michigan.”
As for other news, Gramma and Grampa Poopster and Gramma Mary made a trip down in September which was great. The kids showed them everything in BG so that was fun. Then this past weekend, Gramma Mary, Grampa Sig and Trent’s family made a trip down in an RV for the weekend. The kids played with their cousins all weekend and everyone was very tired by the time Sunday morning rolled around!
Finally, thanks so much for keeping Peter and our family in your prayers and thoughts. We are continually strengthened by all of you and are so very forunate to have you all as part Peter’s Team.
God Bless,
The Eigner’s