Peter’s Page

Well I thought I would post something prior to the busy weekend. Sunday is Peter’s 6th birthday and he is very excited about that. Erika and I are thrilled, as each birthday with all our kids is a blessing. It has been a busy time for b-day’s around here. Ellie turned 4 on April 29th and Erika’s birthday was April 30th, you can ask her how old she is! Ellie enjoys being 4 and acting like she is 14 and Kate she just enjoys all the ice cream! Peter and Ellie have there first soccer games on Saturday, and then we are going to the twin cities for a friends 40th and will celebrate Peter’s birthday while we are in town. On Sunday we are taking the kids to the Mall of America amusement park, they are pretty excited! Also, Erika and I want to again say thanks for all of your support of Peter and our family, we are truly fortunate. Like you, we are very thankful that Peter is doing so well and you all have been a huge part of that. Anyway we will let you know how the big weekend goes, if you are anywhere but Minnesota you should enjoy your weekend, we are supposed to get a couple inches of SNOW!

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.

• The MIBG shows no evidence of disease!
• The CT scan shows no evidence of disease!
• Peter is still HAMA positive

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.

We’ve been on the go! We spent the last week at Camp Sunshine, a 6-day retreat for families of children with life-threatening illnesses (this was one of the oncology weeks). It was really refreshing and a very special week for the 5 of us. The camp is held at Yogi Bear’s Jellystone Park/Three Bears Lodge in Wisconsin. It was a busy week; full of really fun activities (“day camp”) for the kids, lots of playing in the waterpark, and some really quality discussion time for the adults. It is a camp designed as much for the parents as the kids, which makes it really unique. It ends with an unbelievable evening of all kids (cancer kids and siblings) releasing their “Wish Boats” into the lazy river in the water park. The kids make their boats during the week, and they each have a little candle that is lit while they make a wish and send the boats onto the river. We met lots of wonderful people, including 3 other NB families whom we had not met before! The camp was founded in Maine, and I believe they have camps running out there almost year-round! Thank you Donna for encouraging us to go, and a huge thank you to Mrs. Titus, Mrs. Bailey and Mrs. Johnson, Peter and Ellie’s wonderful teachers who have been more than accommodating and understanding about them missing a lot of school lately!
We went straight to Mpls on Friday so we could attend a benefit for our little friend Ella Hauschildt (caring bridge / ellahope) and it was a blast, and a very big success! We had a great time and got to catch up with lots of high school friends.
We got home yesterday afternoon and will head back to the cities tonight to fly out to NY on Monday morning. Peter will have the full gamut of tests again this week. It’s hard to believe it’s already been 3 months since the last round. We are cautiously hopeful that his HAMA level will be lower again; maybe even low enough to get some treatment in the near future? They assure us his level will come down; but some kids’ levels come down in 2 months; some kids in 6 or 9 months.
Best of all, Peter has been able to spend a lot of time lately being a normal kid. I asked him the other day what he wished for, and he said “Well why don’t wishes usually come true?” I said, “What makes you think that?” and he said “I have wished to be happy all the time!” So I guess he has pretty high standards. He is about the happiest kid I know – it’s pretty rare that he gets down or upset.
Well enough of my rambling (once again you can see why it’s a really good thing that Uncle Matt does the writing!) We will get pictures posted of Disney, Camp Sunshine, etc. Matt is working on a new photo album!
We appreciate your prayers as we head into another agonizing week of testing!

Well I guess they call it Magic Kingdom for a reason! We were on Peter’s Make-A-Wish trip to Disney World last week and it was, well, magical. I wouldn’t classify it as a relaxing family vacation but it was so much fun! The kids deserved every minute of it, and that alone was priceless!
Our trip actually began with a nights’ stay at the waterpark hotel in Bloomington where the kids had a blast! A limo picked us up early the next morning and brought us to the airport where we were escorted onto the plane so Peter could go in the cockpit and meet the pilots, see the view from there and take a few pictures. Once in Orlando, we were met by a Make-A-Wish volunteer who helped us get our luggage and into the rental car they had reserved for us. A short drive later we arrived at “Give Kids the World Village’ and boy, that is exactly what they do! I can’t say enough about the accommodations, the hospitality and volunteers (over 1,000 every week!), and the fun they have in store for the whole family! After a little mini golf, a train ride, the remote control boats, it was over to the Ice Cream Shop which is open daily from 7am-9pm! Need I say we tried out the product a few times? They serve 3 meals every day, there’s a carousel outside the “Castle of Miracles”, a “Gingerbread House”, “House of Hearts”, a theater, and on and on… we could have told the kids that was Disney World and they would have been happy!
It would be hard to recap the entire week in one short post, but we went to Disney 3 days (Magic Kingdom for 2 and Animal Kingdom for 1), Sea World and Universal Studios. We spent the last day at Wet ‘n Wild which the kids loved too!
We were joined by Troy, Macer, Grace & Lily and Grandma Mary for the first 2 days, and Grandpa & Grandma Hanson for the next 3. I think everyone agrees the trip could not have been any more fun! The kids were so good (not waiting in any lines doesn’t hurt). Peter thoroughly enjoyed being the “big boy” with his little sisters and cousins. It was very cute how he took the lead to help them meet princesses, go to the next ride or whatever. We were amazed at Peter’s energy. Had we taken this trip 1 year ago when we had originally planned it would have been a very different experience. He has come a long way!
There are many to thank for making this trip a reality. Make-A-Wish Minnesota (especially Molly, our Wish Coordinator!), the Central MN Choppers (bike club who raised funds for Peter’s wish), Give Kids the World Village and all the volunteers. I know I am forgetting many. Since I don’t write often, I probably haven’t done a sufficient job of thanking people since this journey began in August of 2006. Life was a bit too overwhelming to keep up on “thank you notes” which I have felt bad about since the very beginning!! Please know that your support, prayers, gifts, generosity of time and resources does not, and has not, gone unnoticed or appreciated. We talk often (daily?!) about how lucky we are and the unbelievable support system we have…we will never forget. Thank You from the bottom of our hearts!

* 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.”

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.

We want to wish you all a belated Happy Valetines Day, or Balentines Day as Kate would say. All is well at the Eigner house, the kids really enjoyed Valentines Day parties at school and daycare and are restocked with enough candy to last them through the winter. Peter has a consult next tuesday for his kidney, so hopefully we can get some questions answered. He is also going to have a couple other Dr. visits while he is down at the U of M. Peter is going to have his line removed on February 29th, and he is very excited about that as are mom and dad. There has been plenty of life saving chemo, blood, platlets, stem cells, antibiotics and other medicines pumped through that thing over the past year and a half. We want to also to thank all of you for your continued support, we are more and more grateful each day. Also, please continue to pray for the many kids and families who’s paths we have over the past year and a half.

Have a great weekend,

Ty

We’ve all been enjoying the great news from the last trip to New York. The days have been far less exciting lately and that’s a good thing. Yet the battle continues. Peter is winning, and we know he’s a champion, but he’s certainly not done fighting cancer.

I’ll explain the present strategy against cancer, but right now Peter is fighting RSV (Respitory Syncytial Virus). I suppose this would be a bad cold in most kids, but Peter is a special case. On Sunday night, Peter’s sister Kate was hospitalized with pneumonia. As soon as she was released, Peter’s school called because he was sick with a fever.

Ty took him to the clinic where he was diagnosed. And then he was taken to the hospital. Normally RSV isn’t treated, but he was given antibiotics and blood cultures were drawn. He will be monitored closely, especially because of his history with ARDS. Mom and Dad will also monitor Ellie, as well, since she’s probably in line to pick up this contagious bug.

Now back to the fight against cancer. In NYC Peter was still HAMA positive. Until he’s HAMA negative, he can’t receive any more 3F8 antibody treatment. His HAMA level will continue to be tested and he will receive more 3F8s in NY whenever his HAMA level drops (hopefully sooner than later).

They also tested Peter’s immune system in NYC to determine if it was back to full strength since his transplant. It is not, so he continues to take daily medication. Every three months Peter will be back in NYC for the testing he just had in early January and his immune system will be tested again. The next trip is planned for April (and this is the next time we all sit on pins and needles waiting for test results).

Peter’s blood pressure remains high and Ty and Erika are pressing to get to the root cause. His pressure is checked twice daily and he remains on hypertension medication. You can see that even as we get to rest easy with the last round of great test results, Ty and Erika do not.

Finally, once Peter puts RSV behind him, he will have his central line removed. This is the Hickman — the lines that have been permanently dangling from his chest for over 18 months. The timing of this is great, because he is scheduled to go to Disney World in March through the Make a Wish foundation. With his lines removed, he’ll be able to play in the water without a wetsuit and fully enjoy the activities…. and he’ll be able to take his first shower in well over a year!

A while ago I ran another big batch of Peter’s People t-shirts and I’ll be opening them up for sale through this site in the coming days. I know that some of you missed the first sale, so come on back for this round. I’ll keep the sale open until I’m out of stock.

Erika just informed me that she got word from NYC that Peter’s Bone Marrow biopsy was CLEAR! Thank you so much for your all of your heartfelt thoughts and prayers. Peter continues to respond favorably and you are ALL a huge part of that. We will continue to pray and fight until there is a cure for this awful disease. Also, please keep Mary Virnig, “Little” Gus Guerra, Logan Fogarty, Donna Bzdok, Terri Tomlinson and Sherry Christianson in your prayers, they too are still fighting there own battles with cancer.

God Bless,

The Eigner’s

We’ve been waiting patiently (somewhat) for the results of the testing and I just heard the results of the MIBG and CT scans.

These two tests show NO EVIDENCE OF NEUROBLASTOMA.

The bone marrow biopsy results are pending, but feel free to fully enjoy these first two results. And have a wonderful weekend!

–Proud Uncle Matt

Yesterday (Tuesday) was mainly spent at the hospital in NYC. Peter had his labs done and and height and weight measured. He is 44 pounds — still lighter than he was pre-diagnosis, even though he seems to be filling out.

He also had CT scans of his head, neck, chest, abdomen, and pelvis. They drew blood to check his HAMA levels and gave him an injection for a MIBG scan taking place today. Along with MIBG today, he will have some bone marrow biopsies.

Test results should start trickling in today. They only thing they learned yesterday was  that Peter has ear infections. This was shocking, because he hasn’t complained about his ears at all and the NP said they were “flaming”. He has a  bad cold, but you’d think he’d recognize inflamed ear canals. I suppose it’s good that they happen to be getting medical attention at the present or things may have worsened.

After the hospital, Ty, Erika, and Peter headed to Rockefeller Plaza for ice skating. Peter brought his own hockey skates on the trip. I heard that Ty was super excited to rent himself some figure skates, but wound up with hockey skates after all. I would have paid to see Ty rounding the oval in figure skates, pushing off with his toes. But I don’t think this earth will ever see that.

Let’s hope for great news in the coming hours and days.