Author: Uncle Matt

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.

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.

Here we are on the other side of a great holiday season. I was with Peter for Christmas Eve and Day at Grandma and Grandpa’s and Erika and Ty’s homes. Everything appeared just like a Christmas postcard. There was plenty of glistening snow outside and three generations of family inside, completed by five excited children. Peter and his sisters and cousins ripped into their gifts with fervor. Only if Peter was playing and his shirt would rise, you might have seen a sign of abnormality — Peter’s hickman lines dangling from his chest.

This sense of normalcy is reason to be thankful. I remember Peter sitting on my lap through last year’s Christmas church service, completely bald and fairly frail. This year you have to look a little closer to notice that his skin is dry from the accutane or that he has to take certain meds daily and get his blood pressure checked twice daily.

The next step is for Peter, Ty and Erika to visit New York City once again. They’ll be there next week for testing and examination. It’s hard to imagine this being an emotionless trip. The tests probably won’t have neutral results and we pray that Peter is retaining the upper hand over his foe. I’ll provide more updates on the exact testing schedule as I hear more.

Here is Peter in his new truck on Christmas night with sister Kate riding shotgun.

Hello again. I hope your Christmas season is ramping up nicely. Peter is doing well and he should be in position to enjoy a normal Christmas at home.

He is back on accutane and had another headache last week that caused him to miss school. It’s worth noting that he loves school and he doesn’t want to miss it. But when a headache is bringing him to tears on the way in, it’s probably best to turn around and head back home.

Erika and Peter visited an orthopedic surgeon at the U of M last week, as well. This meeting was set in motion when Peter’s gym teacher mentioned Peter’s noticeable limp to Ty and Erika. The limp is not new; They’ve seen it for months in varying degrees. So they decided to get it checked out. The doctor suggested that the muscles around the tumor bed in Peter’s abdomen are essentially underdeveloped or injured for obvious reasons. These muscles are important for lifting your leg. They’ll also do a bone scan just after Christmas to make sure there isn’t something else at work, but they don’t expect to see any problems.

Peter remains HAMA positive, so no further antibody treatments are scheduled at this time.

I’m just realizing that I haven’t seen Peter for a month and a half or so. It’s been a LONG time since I’ve had a streak of that length and I guess that means that things are continuing to be relatively normal for the Eigners. I’m sure you can see him around the hockey rink as Ty’s team is in full swing. I’m pretty sure there’s no place he’d rather be. I’m looking forward a nice ‘normal’ Christmas with him next week.

Peter’s headaches have subsided after finishing this round of Accutane, so it stands to reason that the pills were the cause. The other affects of Accutane linger on, however. He has very dry skin and has spells of irritability — or emotional moments. But all-in-all he’s doing great. He remains on the BP medication.

Tomorrow (Tuesday) the results should come back from the blood work that was sent to NYC last week and they will know if Peter is HAMA-postitive/negative. In either case, they are scheduled to go back out to NYC the 2nd week of January for testing. Ideally he’ll be HAMA negative soon and another round of antibody treatment will be scheduled.

I hope everyone had a wonderful Thanksgiving holiday. Just before turkey day, Peter visited the Pediatric Nephrologist in Minneapolis to check out his kidneys. She couldn’t identify any specific reason why his damaged kidneys would be causing his hypertension (high blood pressure), so she suggested weaning him off the BP medication and testing his blood pressure twice a day at home. In general, she was pleased with the condition of his kidneys.

That sent Ty and Erika into a scramble to find BP equipment with a small cuff size and as of Wednesday night, they hadn’t any luck. That is until family friends, the Christiansen’s, sent out nurses twice a day from their own home health care business, starting on Thanksgiving morning. And that continued until another friend, Dave Cohen (father of NB warrior Jacob), could overnight his BP equipment to them. So thanks to all who helped out.

However, his blood pressure is still high so he’s still on the medication. He has mainly been doing very well, but he’s been getting really nasty headaches in random spurts and he’s tired in spells. They thought he was going to throw up in the car due to one of his headaches and he was writhing on the floor at daycare yesterday battling another one. The accutane does not typically cause headaches, so maybe it’s blood pressure related. Luckily they have an appointment in Minneapolis on Thursday with Dr. Weigel for a check up and echocardiogram. Maybe that appointment will shed some light, but in the meantime, each headache increases concern.

Cookies
There is a fundraiser going on right now that might help you out with Christmas shopping while helping MSKCC improve on the antibody treatment that Peter is receiving. Peter is receiving 3F8 antibodies and has built up immunity to it twice. Sloan-Kettering needs funding to improve the 3F8 antibody treatment by humanizing it, hopefully eliminating the patient’s rejection of the antibody. The Band of Parents are baking cookies to fund this effort. Visit the site with the link below and read a much more thorough explanation of their mission.
Cookies for Kids Cancer

CHECK
Ty and Erika have taken the initiative to start a non-profit to fight cancer and to help kids and families battling cancer today and in the future.  The foundation is called CHECK, Coaches Helping Eliminate Cancer in Kids. Ty — a Minnesota high school hockey coach — took his story and a challenge to the rest of the high school hockey coaches in the state. The coaches enthusiastically accepted the challenge to raise $1000 per team this year (and there are a lot of hockey teams in MN).

That’s the good news. The bad news is that the foundation needs to be legally set up and organized quickly and there are more questions than answers right now. Ty and Erika are looking for an enthusiastic guide for this process. If you have any resources or referrals in the area of 501c3 status, be sure to let them know. I know they’re not looking for volunteer work, just a trusted partner.

The Skate With The Irish event is going on Wednesday night, the 21st, at 7:00. Check out these awesome items available for the silent auction.

• team signed Colorado Avalanche goalie stick
• team signed LA kings Jersey
• real game CC jersey
• Houston Aeros jersey – autographed
• Wild blanket
• a couple knee hockey sticks
• Autographed Dallas Stars puck
• Autographed Eric Johnson stick
• two winter season passes to RHS sports
• …and more

Thanks again to all of you putting on this event (and attending). It should be a great evening. Go Irish!

Hello again! November has been refreshingly uneventful, although that’s only relative to some wild months. There are many activities taking place in the fight, but Peter and family have had more normalcy in day-to-day life than they have in a long time — probably as much as anytime since diagnosis 15 months ago.

First of all, Peter looks fantastic. He has been on an appetite enhancer that’s helped to fill him out again. You can see for yourself how good he looks from this picture at the Children’s Cancer Research Fund Gala. Here he is, with Parents, in front of his award-winning butterfly drawing. In fact, he was so dapper that he made the rest of us look like bums (Except you, Erika. You look great).

As treatment goes, he’s on cycle 3 of accutane. These are the pills that can cause headaches, irritability, and skin dryness. All side effects have been worse this round, but he’s doing very well. His blood pressure has been monitored consistently, since it was recently high. It has been in check with help from additional medication.

On Tuesday he’ll be in Minneapolis for a meeting with the Pediatric Nephrologist to check on his kidneys. The hospital in NY is requesting another renal scan, so maybe they’ll do one, but they’re not sure exactly what will happen during the consultation.

The next scheduled appointment is on the 29th. He’ll be back at the U of M for an echocardiogram, blood work, and a meeting with Dr. Weigel. Blood will be drawn and sent to NYC to test his HAMA levels. In review, this level determines when he can continue with the antibody treatments in NYC. He is currently HAMA positive and his levels have been dropping. When he’s HAMA negative, he can resume treatment.

If he is HAMA negative, which would be great, then the 3F8 antibody treatment may interfere with Christmas plans. Not ideal. But the current schedule only shows another early January trip to NYC for testing, so we’ll see.

Finally, one of Peter’s friends that he met in the hospital in NYC needs the prayers of Peter’s People. Little Gus, from Miami, and his family, Gus, Theresa, and brother Miguel became close with Peter and family during their trying times. They’re a fantastic family and Little Gus’ blood counts are staying too low to undergo the surgery he needs.
Click here to visit his site.

On Wednesday, November 21st, the annual Skate With The Irish benefit for Peter is happening at the Rosemount Ice Arena. The event runs from 7:00 to 8:30 PM. Fans off all ages should bring skates and hit the ice with the team. There will also be player pictures, trivia contest, bake sale, music, raffles, pizza and more.

The Rosemount High School Coaches and Blue Line Club are doing this for the second year in a row and donating all proceeds to the Peter Eigner Benefit Fund. Thanks for your efforts and generosity! I look forward to going and I hope to see you all there.

Well what do you know, things didn’t go exactly as planned yesterday. After waiting around in the hospital for a couple hours, the procedure finally started. When the procedure concluded, Peter did not receive a stent in his left kidney. It turns out he didn’t need it, because there wasn’t a blockage. Dye was injected into his system and apparently showed a clear passage. I suppose that sounds good, but the fact remains that his kidneys are damaged and not behaving properly. I wish I could provide more clarity about his kidney status, but I really can’t. Peter will be referred to a local kidney specialist for further evaluation when he’s back at home.

The day was long at the hospital and, although Peter did get into costume and got out of the hospital, he wasn’t up for trick-or-treating in the evening.

I don’t think I mentioned it before, but Peter’s blood pressure was high when he arrived at the hospital earlier this week. Today they had an appointment at the clinic and his blood pressure was still high. The reason is not known.

In total, I think yesterday and today have been frustrating due to long waits, some misinformation, and a lack of resolution or a sense of progress. But he’s through another procedure without complication. Even though the Eigner’s can’t check off a medical milestone on the trip, Peter is still moving forward. He’s still fighting on down the winding road to full health.

Happy Halloween. Peter is in for the procedure this morning; He’ll be put under for an hour or two and a kidney stent will be inserted. There was a little concern yesterday, because Peter has a cold and the nurse thought they might postpone the procedure — which induced temporary frustration at the prospect of a longer stay or another trip — but Dr. Laqualia said it will be fine to go ahead with it. Hopefully he’ll be able to slip into his Ninja Warrior costume later today and collect some goodies.

Stepping back to yesterday, Ty, Erika and Peter went to Toys R Us in Times Square, because there was a promotional party of some sort for The Bee Movie. I’m not going to nail all the details here, but a friend of a family member was involved with the promotion. Jerry Seinfeld is the creator and voice of the main character, so he was making an appearance. So while at the event, Peter grew tired and hungry and probably a little bored. Then the aforementioned family connection came through with a new game console for Peter (a Nintendo DS, I believe). What a treat. On top of that, they learned that Jerry Seinfeld wanted to meet Peter. So the three of them had a few minutes to hang out with Jerry alone and pick up an autograph or two. I understand that Ty made him laugh and he’s pretty proud.

Stepping back to Saturday, the benefit dinner at Legend’s was an amazing time and great success. Thanks to everyone involved: the planners, those in attendance, the bidders, the donators, etc. I can’t thank everyone individually, but all contributions of time, money, talents are special and appreciated. There was a lot of money raised and it will be put to good use. And a lot of fun was had. Also, special thanks to Perri & Carey for the live music and Beaujo’s Wine Bar & Bistro for the wine.