A journal of Peter’s journey
I just received this text message from Ty.
NY just called, the spots are BENIGN!
Praise the Lord,
Ty
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!
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.
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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:
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.
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.
We’re still waiting for the final test results, but I want to let you know about a Blogathon that will be starting this Saturday, the 26th. The owner of this site will be blogging for 24 hours straight in order to raise money for Band of Parents, a Neuroblastoma charity.
She will be featuring two children every half hour on her blog and Peter will be featured at 12:00 AM on the 27th. This is the second year she’s done this. Thanks, Nikki, and good luck!
Link to the Blog
http://bloggingforkids.shebecameabutterfly.net/
Link to Donate
http://www.change.org/myfundraising/BoPBlogathon
Hello all. Thanks for checking in on Peter’s progress.
The results of Peter’s CT Scans came back on Wednesday and they are clear. His echocardiogram didn’t cause any alert. The bone marrow biopsy results will take a couple days yet. In summary, Peter still shows no evidence of disease.
He is also HAMA negative. This means that he can resume with the 3F8 antibodies soon. The antibody treatment is meant to help keep the cancer at bay by causing Peter’s body to fight against any malicious cells. I believe Ty and Erika are in the process of scheduling the next round of this treatment in NYC.
Because Peter and family are living at my house temporarily, I’ve seen a lot of the little guy recently and he looks great. He had a few bandages from the testing to show off, but is as smiley as always. His focus remains on his next baseball game. Hopefully we’ll hear that his bone marrow is clear as well and he can continue running around the diamond.
Erika and Peter flew to New York City on Sunday evening for Peter’s quarterly testing. This is always an anxious time. Yesterday Peter was measured and weighed, some blood was drawn, but not much else. He weighs more than he’s ever weighed and he’s grown a centimeter and a half since last visit. I think these are good signs.
Today and tomorrow he will go through the big tests: Scans, bone marrow biopsy, an echocardiogram, and more. Some results should be fairly immediate, while the bone marrow biopsy usually takes a week or so.
I’ll keep you posted.
Peter has been chosen as an honorary chairperson for the Relay for Life in Rosemount this month. The event is on June 20th in Central Park, Rosemount, MN at 6:00 PM. Erika has started a Peter’s People team and you can join the team by clicking here and signing up. Click on the Join Our Team link and register as a Team Member. If you cannot participate, but would like to donate to the American Cancer Society, you can also do that by clicking the Donate link.
If you have a Peter’s People t-shirt, please wear it. I will have a limited number of shirts/sizes at the event for sale, so you may want to arrive before 6:00 if you would like to buy them. Those proceeds will also go to the American Cancer Society.
Then the celebration continues on Saturday at 4:30 PM and into the evening. Peter’s Aunt and Uncle, Melissa and Trent Eigner, will be hosting a party at their Rosemount home. Jason Perri will be providing live music, food and drink are provided, and kids will be able to play on jumpers. Please join!
12465 Blanca Ave
Rosemount, MN 55068
Click for a Map
Let’s get right to it. The bone marrow studies, including four aspirates and two biopsies are all NEGATIVE. Again, no evidence of disease!
With that round of stressful testing behind the Eigners, a new plan unfolds. They will be back the University of Minnesota on April 29th for a renogram and an appointment with the Pediatric Nephrologist. They’re still trying to assess his kidney function (or damage) and determine how long he will need to continue with blood pressure medication.
During this trip they will also draw and mail a blood sample to NYC for HAMA testing. The testing will continue every four weeks until he is HAMA negative and can continue with the 3F8 antibody treatments. The next trip to NYC for testing is scheduled for July, but hopefully he’ll be out East sooner for the antibody treatment.
The picture is Peter and Kate with a beast that I can’t classify. It’s one of many photos from the wonderful trip to Disney. A complete photo album of the trip is to come.
I’m still alive, although feeling guilty about my lack of updates. I guess no news is good news until it’s time for scheduled tests. I just spoke with Erika and some results are back.
I can’t express how great that news is. I just know how I’d feel if I had to type out a different test result. None of us expect anything other than clear tests from here on out, yet we know that reality guarantees nothing. So celebrate every great result.
It sounds like the trip is sailing by. Peter is doing well throughout, even though he had to get poked for a temporary line that was removed today while he was sleeping during the bone marrow scope. The results of that test will be back in a week or so.
The three of them were given tickets to the Mets baseball game tonight; Peter will enjoy that.
I’ll keep the test results coming as we know them.
* Update – 2:00 PM: The line is out and Peter is feeling good. He has an IV in his arm, however, so he’s not free yet. He should be getting out of the hospital shortly.
It’s time to get rid of those dangling lines! Peter is in the hospital this morning to have his hickman removed from his chest. He will be put under for the procedure and hopefully by about 11:00 AM he’ll be awake and comfortable. Now Peter might get mad at me someday for this picture, but I’ll risk it. Here you can see the hickman that is being removed. And you can see Peter flaunting his substantial brawn.
BGSU
On Saturday morning (tomorrow) Ty, Erika and Peter will fly to Ohio to visit Ty’s alma mater, Bowling Green State University. The BGSU hockey team will be raising funds for children’s cancer on Saturday. It’s a big day at BGSU with men’s and women’s basketball games during the day and a hockey game at night. During all three events there will be a silent auction with proceeds going to the Peter Eigner Benefit Fund.
Here is a quote from Ty and some additional information from the press release:
“Situations like this really show what it means to be part of the Bowling Green family. It makes me very proud to be a Falcon when I see the responses of so many alumni and community members stepping up to help a past Falcon and his family going through a tough time.â€
Peter and his family are traveling to Bowling Green and will be in attendance at the BGSU-Michigan State hockey game this Saturday, and appropriately, just prior to the opening faceoff, Peter will be smiling and doing something he loves…dropping the ceremonial first puck on the ice.
Thank you to all those Falcons that are making this day happen.
Kidney Update
The tests from last week didn’t product any concrete results yet, but they have revealed a more complete picture. Peter’s left kidney appears to be damaged from surgery and inter-operative radiation. It is smaller than the right, it didn’t take as much dye during the test, and the top of it might have been slightly cut off. His right kidney has an infarct, meaning that the blood flow is cut off somewhere.
It doesn’t seem that any of this should cause major problems. And it’s not known why his blood pressure spiked well after surgery (October). The next step is to have a Renogram on April 29th and I really don’t know any specifics about the goals of that test. Time will tell!
Peter is at the hospital today having some tests on his kidneys. His blood pressure has remained a little beyond the ideal range, even with his daily dose of medication. Hopefully a scan this morning and a consultation with a specialist this afternoon will shed some light on the root cause.
Next week he’s scheduled to get the lines removed from his chest. As I mentioned before, that will be great. They don’t really bother him, but they do inhibit some childhood activities. He is still HAMA positive. Once his levels drop then more antibodies can be scheduled.
The trip to Disney World is right around the corner. I was asking him about it last night and he has some pretty clear ideas about his activities down there.
As some of you noticed, I actually did get the t-shirt sale going again. In fact, I shipped some shirts this morning. Click on the T-Shirt Sale link at the very top of the page to order. Thanks!
I believe this was taken before Peter’s first day of school with sister Ellie.
