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.
I just received this text message from Ty.
NY just called, the spots are BENIGN!
Praise the Lord,
I was immediately covered in goosebumps. If that doesn’t make your day, I don’t know what will.
Further tests are scheduled for the week of August 10th. The scans will be repeated. If the tumors grow, they may require treatment, but it’s too early to predict.
On behalf of the Eigners, thanks for all the prayers and support!
Peter’s biopsy went very well this morning. It did not take as long as we expected and the Dr. felt that he got plenty of tissue for a good sample. Peter rested in the hospital for a couple hours afterword, ate some lunch and then we headed back to the Ronald McDonald House. He is doing very well and is not in any pain. We are heading home to the Twin Cities tomorrow morning, which is great. We don’t have any results of the biopsy yet, but the Dr. told us to call back to the hospital next Tuesday and they should have some findings. So all in all today went as well as it could have and now we will continue to pray with all of you that the biopsy results are benign and not NB. As always, we cannot thank you enough and we are completely humbled by the support that you all have given to Peter and our family.
Ty, Erika and Peter
(Peter waking up from the biopsy)
Some of you might not have seen Peter recently and we keep saying how well he’s doing, so I thought I’d offer some proof. Here are photos from the past year, ending with a few from this very trip that Erika snapped with her phone.
In one picture he’s playing baseball at the Ronald McDonald Day Camp and I heard he hit two home runs. Peter could play baseball all day in the summer, so it’s great to see he took some cuts in the big city.
Another picture shows Peter walking back from the day camp with another little camper and new friend. I understand that they didn’t have to hold hands. They just did.
The biopsy is just hours away as I post this. Outcomes will be shared as they become available. Thanks for all your support.
As Uncle Matt stated in his post, we now have a plan. Peter will have a needle biopsy done Friday morning at 8am. This is good news being that a needle biopsy is much easier on Peter than the other option. We pray that they are able to get enough tissue to clarify what it is we are dealing with.
As for yesterday, it was a long day of waiting. Peter had a blast in the playroom at the clinic and in the playroom at the Ronald McDonald House. Erika and I mainly sat back and watched him. He played with many different kids of varying ages. He treats them all as if they are his lifelong friends. It is really neat to watch. He shot baskets, played knee hockey, video games, board games, checkers and was truly enjoying himself. Erika and I were trying to see if there was anything he really wanted to do, and his response was always “go to the playroom”.
For those of you that have not been to Memorial Sloan Kettering, it is quite the place. You are there with people from all over the world who’s children are being treated for various types of this awful disease. I often catch myself watching how all these people interact. It is definately an interesting sight. Then I am always drawn back to Peter, he is so polite and kind to everyone he comes in contact with, Erika and I are so proud of him.
As for Friday, we continue to pray that Peter was healed two years ago and these spots are something other than Neuroblastoma. It is very difficult to sit and wait, but we draw strength from Peter, from God and from all of you. This is another test for our family and I am confident that with the grace of God and all your prayers and support we will pass with flying colors. We can never thank all of you enough and will never take for granted how fortunate we are to have so many people to help us through this. We are also so blessed that Ellie and Kate are in such good hands with family and friends back home. Thanks to all of you who have offered to give us a hand with the two of them. We miss them a ton, but are comforted by the fact they are doing so well.
Ty, Erika and Peter
Ty, Erika and Peter are in NYC and it’s been a long day consumed by two or three doctor visits and a lot of waiting in between. Although nothing has happened, these days are still a roller coaster ride. Usually they think they understand a short-term schedule, but it changes, and then it changes again.
When they first met with Dr. LaQuaglia, he was planning on performing an open biopsy — an invasive and frightening surgery — tomorrow morning. By the end of the consult, the plan was to do a less invasive needle biopsy to be scheduled later in the week (hopefully). That plan was reviewed by Dr. LaQuaglia and Dr. Kuschner while Ty and Erika waited. Later today that plan was confirmed during a second consult with Dr. L and it’s tentatively scheduled for Thursday.
The plan from there would be one of the following:
- Needle biopsy shows NB, treatment would be planned
- Needle biopsy inconclusive, an open biopsy is necessary
- Needle biopsy shows something other than NB, some treatment
Each discussion with doctors or nurses is emotionally punishing as the possibility of NB recurrence is discussed. Yet the hope is still alive that the spots (actually small tumors inside the liver) are something else.
On the positive side, Peter’s MIBG scans look good and his marrow test is preliminarily good. Peter is strong and ready for whatever comes his way. This morning he got a line put in his arm and he didn’t even flinch (it was removed now that the open biopsy has been rescheduled). He proceeded to play in the playroom throughout the day.
Peter will attend day camp at the Ronald McDonald house the next couple days and have a blast. Erika and Ty will pass the time, somehow.
Pray that the needle biopsy returns conclusive results, avoiding the invasive open biopsy, and that the results are benign.
I had written a post prior to Peter and Erika going to NYC, unfortunately, I was unable to get it to post on the site. Anyway, I wanted to tell everyone how all was going with the Eigner’s. Peter is playing baseball and hockey this summer and loves both. He is growing and gaining weight has a great appetite and lots of energy. We feel like from the outside he is doing awesome, but you never know what is going on inside. I also wanted you all to know how well the girls were doing, Ellie is in hockey and gymnastics and Kate is doing gymnastics this summer. All in all we are doing very well. I was going to ask you to keep Peter in your prayers as he heads back to NYC for his scans and tests and again remind you all how much our family appreciates all of your prayers and support.
As you probably know by now Erika, Peter and I are going back to NYC today to see what the “abnormalities” on his liver are. We do get a 3 hour layover in Milwaukee to see Grandpa Sig, so that will be good. As for NYC, we will let you all know what we are dealing with as soon as we know. We tried our best to have a fun weekend up North, but it was very hard for me. Erika has been incredible since hearing the news of the spots on his liver. She has been positive and strong for all of us. I will be honest this news has made my stomach ache since last Thursday. As the weekend went on, I was strengthened by faith, family and all of you. Each time my phone would beep I would read the text, e-mail or answer the call and immediately feel the wonderful support.
As for today, I will tell you this. Peter is still gaining weight, has a ton of energy, has a great appetite and he and I are going to hockey this morning. He is the same kid he was prior to this weekend. He is a child of God and Erika and I could not love him any more than we do. He has a great family and is supported by so many of you. We continue say many prayers for strength and say “thanks” to all of you for doing the same.
We got a call from Dr. Kushner’s office last night. Dr. K was in a meeting so we haven’t had a chance to ask him the bazillion questions racing through our minds just yet, but we will soon. The MRI confirmed there are “abnormalities” so they’ve asked us to come back Monday and will biopsy the spots on Wednesday. Dr. LaQuaglia will do this; he is the surgeon who performed Peter’s 3rd abdominal surgery 2 August’s ago. We’re looking at one-way flights at this point; we have no idea what to expect in terms of the invasiveness of the surgery or the recovery, or anything else.
I feel like I’m in shock, but I know Ty is past the shock and feels like he’s being tortured. It breaks my heart equally to see Ty this way and to think about Peter having to endure more “stuff”… we both just want to take his place. He doesn’t even know yet that we have to turn around & leave again and now he’s old enough that a thorough explanation will be required. It reminds me how cute it was in NY last week that every test we went to (most of which he has done a million times)- he would immediately ask the techs, “about how long is this one going to take…. 15 minutes or so?” No such luck… they’re all longer than that!
I wholeheartedly expected a call that the MRI showed nothing. Apparently it’s not too uncommon to see spots on a ct scan that are “nothing”. The ct just shows spots; the MRI helps narrow down what they actually are. That’s why they added the liver MRI. I don’t know if an MRI can also show spots (now “abnormalities”) that end up being nothing too, but I certainly hope so.
For those of you who see Peter regularly, you know how healthy he looks again. We think he has finally regained his strength from the ARDS 2 summers ago – a very long recovery, but his lungs were in pretty rough shape. Not to mention the transplant, radiation, surgeries, chemo he had already been through.
I just don’t even know where to begin or end here, but please pray that this is a false alarm and not our worst enemy coming back for more. Please also pray for our girls, who are always in wonderful hands, but end up being left behind. We know how scary & confusing this all must seem to a 5- and 3- year old.
Erika and Peter have been in New York this week for Peter’s regular tests. A CT scan showed three spots on Peter’s liver and a MRI was added yesterday determine what the spots are. Apparently the spots could be Neuroblastoma or they could be nothing to worry about. The full results won’t be back until early next week.
Erika was able to stay calm through the ordeal and didn’t frighten Peter. He just knows that he had an additional liver test. They were able to catch a return flight last night even though their schedule was altered.
Hope and pray that this is a scare and nothing more. It will be a long weekend.
All the Eigner’s hope all of you had a great Easter. We went up to Erika’s parents with the kids and had a great time. The kids got to go back to Jenny’s (our daycare person in Brainerd) they had a great time seeing all their old friends and had great weather for an outdoor Easter egg hunt. Peter, Grampa Poopster and I got to go ice fishing too. We had perfect weather and caught a ton of fish, so much that we had a fish fry on Sat. night and it was delicious. We also got to see Carrie and Dino Grillo’s new baby Piper Elizabeth Grillo, who was 3 days old when we stopped by to see them. The kids enjoyed that, especially Ellie who must have held her 6 different times. The winter is all wrapped up as far as winter hockey goes. The team I coach for won the Minnesota State Championship. It was a great group of players and coaches, and the best experience of my hockey career. Having watched the Tournament for 30 years, it was amazing to be a part of a Championship team and something I will never forget. This years tournament drew over 115,000 fans over 4 days. Peter and Ellie are currently playing hockey in a spring 3 on 3 league at Uncle Trent’s rink “The Pond” and having a blast. All three of the kids are very busy right now. Kate has gymnastics, swimming and goes along to everything else. Ellie has gymnastics, swimming, hockey and school. And Peter has track, swimming, hockey and school, with baseball starting soon. Erika is doing great at work, the new lower interest rates have her very busy. As you can imagine, our schedule is kind of crazy, but we seem to like it more that way!
Peter and I are going out to NYC on the 26th of this month for his 3 month check up. It is hard to believe that it is already time for that. We continue to pray for the best, and know that you all will too. From our point of view, he is doing great. Appetite is really good, energy is good, he is growing each week and is doing great in school. We see none of the signs that we saw prior to his diagnosis, but we have no idea what is going on inside. That unknown is the hardest part of this process, but as a parent of a child with cancer once told me, ” I guess you just know that it is something that you will always have to live with.”
Anyway, that is the latest with us. We hope that you all have a great spring and again we so appreciate all the thoughts and prayers that you continue to give to Peter and our family
Finally, I had my cell phone stolen so if you have been trying to call that is why I don’t answer. e-mail me at email@example.com if you want my new cell number.
Ty, Erika, Peter, Ellie and Kate
We just finished getting all of Peter’s test and scan results back from New York. Brain MRI-CLEAR, Head/Chest/Abdomen CT-CLEAR, Bone Marrow-CLEAR, Urine Screen-CLEAR, MIBG Scan-CLEAR!!! We also found out that his HAMA level came way down, so he could be getting another round of anti-body treatment before we are due back for scans and tests in April. Thank you all so much for your thoughts and prayers, you will never know how much strength they provide us as we wait for test results. With that said, the trip to NYC had to be a succes right. All in All it was a pretty quick and smooth trip. The highlight for Peter was learning to play ping-pong in the playroom. He and I played everyday and he really started to hit the ball pretty well. Especially since he could not bend his arm all the way due to his temp IV line. He got to paint a jewelry box for Kate and Ellie, which has since been destroyed by Kate! He also made individual soap figures for Erika and he girls, they really liked that.
I also have to share one neat story from out there. Peter and I were in the playroom by ourselves on Monday morning, when a woman and a 5 year old girl came in. They sat at the table with us while we were playing a game. After talking with them for a while we found out that the girl’s little brother was being treated for Neuroblastoma. Her grandma then asked me if “Peter had a sibling that was being treated out here?” She was very surprised when I told here “Peter is the one who has Neuroblastoma.” Peter then said “I HAD Neuroblastoma Dad.” I don’t know who felt better about what he said me or the gramma who could see that there can be a positive outcome to this awful disease!
Anyway, I thought that was a pretty cool thing and thought you all would enjoy it. Well better get going, we have a busy Saturday ahead of us.
Thanks for everything,
Peter and I will be heading to NYC tomorrow for his 3 month check up, which will consist of CT scans, MIBG scans, blood work and a bone marrow biopsy. This is the first time that Peter and I have gone out to NYC without Erika or the girls. I have to admit I am more than a little nervous. I am only nervous because you never know what the results of the tests are going to be. Erika and I are feel great about where Peter is at and when people ask us “how he is doing?” We respond by saying “great.” He is doing great in school, gaining weight, has a ton of energy and has a very good appetite. So we are very, very thankful for how he has responded to his treatment.
The kids have adjusted very well to the move back to the cities and they are very active in a ton of different activities like hockey, gymnastics, swimming, school, watching hockey and playing with grandma’s, grandpa’s and cousins. Peter and Ellie are going to play in an exhibition game tomorrow at the US Pond Hockey Championships. They are both very excited about this, even though it is supposed to be very cold. We will be sure to let you know how things turn out.
As for Erika and I, we are plugging along. Erika is thankfully very busy with work at Tradition Mortgage. With interest rates being what they are she has been working very hard and doing a lot of business. The team I coach is doing very well, we are currently 13 and 3, with all 3 losses coming by one goal. We have a great group of kids and coaches and it is fun to be at the rink everyday.
Finally, we also want to let you know how much we appreciate you all continuing to pray for Peter and for keeping our family in your thoughts. This has been very difficult journey and we would not be where we are today without the help of all our friends and family.
Ty, Erika, Peter, Ellie and Kate