It is with overwhelming sadness we want to let you know that our friend Mary Hook-Virnig passed away on Thursday. She fought Neuroblastoma and subsequent Leukemia with an amazing positive spirit and grace. While we cannot imagine the pain her very close family feels, we can very clearly see Mary running freely in Heaven. Please join us in praying for & supporting her family… www.caringbridge.org/marycatherinevirnig
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
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!
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.
It has been since Feb. since our last posting and many exciting things have happened.
First, Ellie, Erika and Peter all had birthdays! Ellie turned 6 and celebrated with her cousins and friends at Pump It Up! Peter turned 8 and had a skating party at The Pond! Erika on the other hand quietly celebrated her birthday without going to Pump It Up or The Pond. It was a crazy couple of weeks, but we survived and had a lot of fun.
Second, Peter and Erika left for NYC today for his 3 month scans and tests. As far as we can tell, he is doing great with his energy, appetite, attitude and all else physical. So we will keep praying for clean tests and scans and hope the trip to NYC is uneventful from that perspective. Hopefully the weather will be good and Erika and Peter can have a little fun. I know he brought some birthday money to spend at the NHL Store, so that should be fun.
Third, we are moving again. Yes, you heard that correctly. I have accepted an assistant coach position at Bowling Green State University. I have always wanted to get into college hockey and to have a chance to do it at my alma mater was an opportunity we could not pass up. The next few monthes will be a little crazy, but we are used to that. We are nervous and very excited about this new chapter in our lives.
Also, keep praying for Mary Virnig as she continues her battle with neuroblastoma. She is one of the most couragous young women we know and her family is priceless. She is currently at the U of M awaiting another transplant. Also, add Jackie Bishoff to your prayer list. She is the mother of 4 and was recently diagnosed with Lung cancer. She is a fighter and an overachiever and we expect her to take this battle head on.
Finally, thank you all so much for all the prayers and support for Peter and our family. We are truly blessed to have so many wonderful people in our lives.
Ty, Erika, Peter, Ellie and Kate
We are thrilled and blessed to report that ALL of Peter’s scans and tests came back clean! Erika and Peter had a rather uneventful trip. The weather was not as bad as they thought it was going to be, which was great since they were going to be walking around NYC for three days. Once again, we can never thank all of you enough for all of your thoughts and prayers. As for the day to day, we are busy day to day with school, hockey, swimming, gymnastics, baseball, playdates work and we would not have it any other way! Although, it does make the weekends go by rather fast. Finally, continue to keep praying for strength and peace for the Ludwinski family as they move forward after Erik’s passing. And continue to pray for Mary Virnig as she patiently waits for her second transplant. She has been on a real roller coaster lately not only dealing with her own situation, but also support the Ludwinski’s.
Ty, Erika, Peter, Ellie and Kate
It hardly seems possible that Peter is already due back in NY this week. He and Erika beat the snowstorm and flew out Monday afternoon. Peter was less than thrilled about going, he cried in the morning and said “why do I have to keep going to NY” We think as he gets older, he understands more about what this is all about. Anyway, he got settled down and went to school for a few hours and then they flew out. He got a headache on the plane and threw up when he and Erika got to the Ronald McDonald House in NYC. He slept for a long time and was much better this morning when I talked to him. He told me, “Dad it is like summer out here, it’s like 30 or 45 degrees.”
He and Erika will go to the clinic today and Wednesday and he will have blood work, CT scan, MIBG test, Brain MRI, Bone Marrow Biopsy and other tests over that time. All in all he does remarkably well considering all he goes through each visit. Kate, Ellie and I will hold down the fort back home and see if we can’t shovel a little snow while they are gone. We had 8 inches yesterday!
Also, please pray for Erik Ludwinski and his family. Erik is 21 and was diagnosed with neuroblastoma at age 4. He was NED for 15 years, then he relapsed. For the past 2 years he has been getting many different treatments. Recently it has has progressed and is not responding to any treatment and Erik and his family are doing an incredible job handling his situation. Erika and I went to see him Monday, it was an incredible experience. Erik was interacting with all his visitors and his attitude was amazing. He and his family are spending whatever time he has left enjoying each other and getting the most out of every day! His mother is one of the most positive people I have ever been around and she has been unbelievably helpful to tons of families affected by neuroblastoma.
Finally, thank you for keeping Peter in your prayers this week while he is in NY. We are so blessed to have so many people praying for Peter and our family.
Ty, Erika, Peter, Ellie and Kate
We recieved the rest of the test results, and they too came back negative! We are so thankful for the results as well as all of your prayers. This will certainly be a very “thankful” Thanksgiving. We are planning on spending it in the Twin Cities with the rest of the Eigner’s. I will keep this short, as it seems that there is a lot to do to prepare to host this event. Again, thank you so much for your prayers and support and may you and your families have a wonderful Thanksgiving!
Ty, Erika, Peter, Ellie and Kate
SO FAR SO GOOD on the scans! Dr. Kushner sent an email last night to say the CT scans and the MIBG both look great! We are so thankful. We LOVE getting emailed results as opposed to a tap on the shoulder in clinic or a phone call! Ty said that right when he told Pete that the scans looked great so far, Peter asked “then why do I need the liver MRI tomorrow?” Good question Pete… We know he still needs it (MRI could pick up different things than the CTs) but who can blame the kid for not wanting to lay in that machine for an hour & a half! We will keep you posted; won’t have bone marrow results until next week i’m sure. Take Care!
In some ways it seems like forever ago that we were back in cancer’s grip (July) when we spent a couple weeks in NY learning of suspicious spots in the liver, more testing, confirmed abnormal, back home, back to NY…. biopsy, waiting, waiting, followed by an enormous sense of relief. And in other ways it feels like yesterday. We sort of teeter on this line between staying ‘in’ the world of children’s cancer, where we are still traveling every 3 months + for Peter’s tests, the intermittent ‘scare’, still seeking knowledge about new treatments, the search for a cure, keeping tabs on the children who are beating it and those are fighting it, some over & over, those who are not so fortunate but get the ultimate cure, not ever wanting to lose the perspective we have gained on life and how quickly things can change; and ‘moving on’ to where it doesn’t consume our lives. There is no easy way to balance it so we just do. Not really sure where I’m going with that, but I think about it every time one of us leaves the rest of the family behind for 3-5 days and the feelings of stress it conjures up no matter how long it’s been, how long Peter has been “NED”.
This morning was one such day… Ty and Peter flew out and are now safely at the Ronald McDonald House of NYC. Pete called earlier and told me there was a carnival in the playroom downstairs… and he made sure to let Dad know that it is open until 9pm! There is nothing better than seeing him excited / distracted upon arrival, because there is definitely stress involved for Pete when a trip to NY is on the horizon. He doesn’t complain about going, ever, nor does he associate what the stress is, but there are headaches, tummy aches, etc that preceed every trip.
They will start Tuesday by going to the clinic for the IV placement, blood draws, visit with the NPs/Doctor. Then he will have CT scans (head/neck/chest/abdomen/pelvis), MIBG injection, and an Audiogram. On Wednesday he has MIBG scan and Bone Marrow Biopsies, followed by a Liver MRI on Thursday. Barring any flight delays they should be back home late Thursday night.
Of course we welcome your thoughts and prayers for a successful, uneventful visit. We are especially thinking of our friends Erik & Mary, who couldn’t be more deserving of being honored at the Children’s Cancer Research Fund gala on Saturday evening. They are both incredible, determined young adults who are trying to kick this stubborn, sneaky disease for the fourth & first time, respectively. And an adorable little guy we met in NY in July from WI, same age as Pete, who has learned of possible relapse and is having surgery this week.
All on caringbridge – erikludwinski / marycatherinevirnig / jackbartosz
Will post as we have news this week!
We hope all of you are enjoying the fall. Peter, Ellie and Kate are all enrolled in 2nd grade, Kindergarten, and Pre-School respectively and really loving school. They are involved in hockey, gymnastics and swimming along with all of the other things that kids their age do. All three of them are really excited about Halloween of course. Peter is going as Wolverine from X-men, Ellie is going to be a cheerleader and Kate is going to be a Princess, Ariel, Barbi or basically whatever she decides on that day! Also, congrats to Erika, Auntie Meese’s and Auntie G for fininshing the Twin Cities 10 mile. They all trained very hard and did really well. Away from school and all the activities, Peter is doing great health wise. He has lot’s of energy, appetite is good and he is growing which are all great things!
Also, please keep Erik Ludwinski and Mary Virnig in your prayers. They are young adults who we have met along this journey who are still in the middle their battle with this awful disease. Erik is truly a hero to all parents and children with Neuroblastoma and Mary has more determination than any young lady I have ever met. Your prayers for them will be greatly appreciated.
Peter is due back in NYC the first week of November for scans and tests, and as always we can’t thank you enough for all of your support and prayers. We know that we are so lucky to have all of you on Peter’s team.
Ty, Erika, Peter, Ellie and Kate
Hello to all of you,
Well Peter and Erika had a rather uneventful trip to NYC (YES!). They went back and Peter went through a battery of tests that he has become all to used too familar with. Anyway, the great news is they all came back negitive! Thank you all for your thoughts and prayers, as I have mentioned many times before, we can never thank you enough. He is going to continue to go out to NYC every 3 months to do scans and be seen by the Doctors. We were hoping that it would be a little longer time between visits, but hey we will make it work. We are going to try to enjoy the last few weeks before school starts now that we are back home for a while. The good thing is all three kids are really excited about school starting. We are so happy that they all love going to school and are excited to start up again. Since the summer is almost over, I will keep this short. Again, thanks so much for keeping Peter and our family in your prayers and God Bless all of you.