Author: Uncle Matt

Peter was back at the U of M yesterday to get the complete CT scans. The results came back this morning and they don’t see any changes from his previous clear scans. YES! This scan also included his head.

The surgery has in fact been moved up to August 3rd with the pre-surgery meetings on the 2nd. They assume there won’t be any antibody treatments that week. That treatment schedule will be re-evaluated after surgery. Blood was drawn this week and sent to NYC to test for HAMA (whether Peter has developed his own antibodies to the antibody).

With another surgery looming, I’m reminded of the first two surgeries and the known risks of working so closely to major arteries, etc. I hope that this one isn’t as risky since there isn’t a large tumor to extract. And I certainly hope it is merely scar tissue where the “path thing” used to live.

As you may have read in the Brainerd Dispatch, Peter has been chosen as an honorary co-chair for the Relay for Life event in Brainerd on Friday, July 27th. You can read the article here (the headline is LIFE’S RELAY). What a nice honor for our little guy.

We all know Peter has one amazing support team and we’d love for you to join us for the event. We will come together as Peter’s People to walk around the track, socialize, and raise money for a good cause. Peter’s People will also provide Peter the strength he needs as he prepares for surgery and continued treatments. The cost is $25 per team member, which includes a Peter’s People t-shirt. If you would like to participate, but cannot make to the event, you may buy a luminary for $10. The luminaries will light up the track and may be in honor of Peter or a cancer survivor, or may be in memory of a loved one. And, of course, you can simply make a donation to the team (contributions go to the American Cancer Society).

The event will be held at the Brainerd High School Athletic Field and it begins at 5:00 PM. More details on the relay are at the event website.

Michelle Alcon (also known as Auntie Meeses) is serving as the team coordinator/coach.

1. If you can participate, email Michelle as soon as possible with the number of people you expect to bring. Please include how many adults and children and a guess at t-shirt sizes.
2. Print and fill out this form if you are participating or ordering a luminary. Please mail the form with payment by Friday, July 20th. Checks should be made out to Michelle Alcon.

We hope to see you there!

Peter’s treatment schedule is more dynamic than one would hope right now, but we know a couple things. First, Peter WILL have surgery again to investigate/remove whatever is showing up in his original tumor bed. This time the surgery will be in New York. Erika mentioned that she’s relieved that the surgery is going forward. Since there is ample doubt about what is showing up, it’s hard to just sit back and wait while the disease could be gaining momentum. And second, Peter will be going to the U of M on July 18th for more CT scans of his entire neck, chest, abdomen, pelvis and his head.

When everything is going to happen — and how the current antibody treatments are affected — is a little up in the air. The surgery is scheduled for August 17th in NYC (with a pre-op appointment on the 16th). But if they get a cancellation, the surgery could be as soon as August 1st. Antibody treatment is scheduled for the week of the first, so that would change if the surgery was moved up, but they’re not even sure that he will be doing another round of antibody with surgery on the horizon. And the post-surgery antibody treatments are up in the air, too. So you can see why Ty and Erika should be using pencil on their calendar. It’s a little hard to schedule flights with everything shifting.

Peter is doing well, though. I’m sure he’s having a great time at home with his sisters. He’s not in any pain and he can be a kid for a while. I have some new pictures to get up on the site, so you can see for yourself.

The marrow biopsy came back today and it was clear — no evidence of the path thing in the big guy’s marrow. Again, the doctor mentioned that he wouldn’t be surprised to find cancer traces in the marrow, so Ty and Erika were braced, making the news that much sweeter. If the test would have come back positive — with cancer — the next step would probably have been another round of chemo on Peter’s already depleted system. It’s an exciting day, to say the least.

The next trip to NYC is scheduled for July 2nd through the 9th. Peter will begin the first round of the antibody treatment on this trip. Spending the 4th of July in the big city instead of floating under the sun on the Minnesota lakes is not ideal, but Peter will be getting the best treatment to increase his odds and that is worth everything.

The first trip went well. Thanks to Uncle Troy and Aunt Macer’s friend, Ralph, for letting the group stay in his home in SoHo. Peter was able to check out the zoo in central park and the world’s largest toy store. He said the plane ride was good and his ears just barely popped.

Enjoy your time at home, buddy. You’re doing great.

OK, this is my third post of the day, so be sure to read the previous two. But read this one first.

Josh Smith, a resident of Baxter, ran Grandma’s Marathon over the weekend and raised pledges for Peter’s benefit fund. There is a very nice article with all the details here in the Brainerd Dispatch (search for “runs for peter”).

If you have an account with the Dispatch, this is the direct link to the article.

Thanks for your goodness, Josh.

After Peter’s fun-filled weekend at home, Erika, Peter, and Auntie Macer (one of Peter’s three Aunt Michelle’s) departed for NYC on Monday afternoon. The flights were courtesy of Macer and Troy’s frequent flyer miles, eliminating the expense of three last-minute flights. The planning process was quite stressful for Erika and Ty, but they are officially in NYC and getting answers.

Yesterday they had a nice long meeting with Dr. Kuschner at Sloan-Kettering and today they will take marrow from Peter’s pelvis (they drill 4 holes instead of 2) for examination. The meeting was very interesting and helpful, but the specifics of what will take place over the coming months is still fairly unknown — how many treatments? exactly when will it start? how many trips? etc, etc

Dr. Kuschner also mentioned that he wouldn’t be surprised to find evidence of disease when the marrow results come back on Friday. This could affect the treatment proceedings, as well. Erika is not losing sleep over the statement, as it was also balanced with positive comments regarding Peter’s status. It’s just another reminder of how Peter cannot be considered “cured” in any way and how this is a long battle.

Now that activity and news will be happening with great regularity, I’ll try to post more concise and frequent updates. Right now, things are happening, but there are many questions hanging out there about the upcoming weeks and months. Tomorrow (Thursday) the group flies back to Minnesota and another trip out east is expected as early as Sunday or Monday.

Why
More stage IV neuroblastoma patients relapse than don’t relapse. And although Peter has responded well to this point and the scans look clear, there can be neuroblastoma cells that aren’t detected by the scans. Antibody treatment is a way to eliminate those cells and prevent relapse.

What
The antibody molecules, called 3F8’s, are made mostly from mouse. The 3F8’s attach to neuroblastoma cells and can destroy them. They administer “rounds” of antibody treatments until the patient reaches HAMA response. HAMA occurs when the patient’s body recognizes the foreign molecules in their body and develops an antibody against the 3F8 antibody. Ideally this happens after four or more rounds and then the treatment is stopped.

When
They like to start this treatment prior to day +90 after transplant, because the body is still weak and doesn’t recognize the antibody as quickly, elapsing multiple rounds of treatment before HAMA. But Peter is already past day +100, so there is a chance that his body will reach HAMA quickly after only a round or two of treatment. That doesn’t necessarily mean that the treatment won’t have benefits, but obviously you want to get four rounds completed for maximum effectiveness.

The exact schedule is being determined at this point. Along with this treatment, he will need to be tested at Sloan-Kettering every three months for the next two years.

Ty and Erika finished the consultation and they learned two things of unequal importance.

Of utmost importance, Peter’s tests all came back negative. Nothing ‘lit up’ on the scans and everything looks clear. They did see a little mass in his abdomen, but it didn’t light up, so they believe it is scar tissue from the surgeries. Nevertheless, it’s one of those little tidbits that keeps one on edge. Overall, though, Peter’s health looks great and he’s exactly where everyone hoped he’d be at this point.

The second — and less important update — is that Peter will not get the antibody treatment here in Minneapolis, tempering the excitement from outstanding test results. Other than knowing that the future holds many trips to New York and Memorial Sloan-Kettering Cancer Center, what lies ahead is very vague. The doctors of the two hospitals are beginning their dialogue to determine the treatment schedule. The Eigner’s expect the first of many trips to New York any day now.

The whole Eigner clan was just at my house gathering their remaining belongings and they’re in good spirits given the uncertain months ahead. Although they wanted to continue Peter’s care locally, Ty said “Who knows, it could even be better in some ways.”

Peter is unfazed. His focus is on his “first real baseball game tomorrow night!”, but I think it’s actually t-ball. He announced that he is number 7 and he’s going to hit it out of the park. I don’t care what he does, only that he’s playing and very excited. I hope they don’t have to leave for NYC until after he takes the field.

Here is the report card from this week’s tests.

• Bone Marrow Biopsy: So far so good
  Marrow was extracted from both sides of his pelvis on Monday. The initial results are clear, but they’re looking deeper.
  
• Bone Scan: Negative!
  Results came back this morning.
• CT Scan: Friday
  Scan of his whole torso, head, neck.
• MIBG: Friday
  This is the scan that “lights up” cancerous areas.
• Audiogram: Upcoming
  

It was a big relief today to get the clear bone scan results. That’s always a scary one.

I would say Peter’s general status is excellent. His hair continues to grow and his energy seems good. He’s quite skinny, so malts before bed are acceptable.

Tomorrow is a big day of testing and then the Eigner’s can go home for the weekend. Monday they will return for their consultation with the doctors and they’ll learn the results of his remaining tests and if Peter will be getting the antibody treatment here in Minneapolis. I think it’s going to be a long weekend of waiting. If he does get the treatment here, he will start next Friday, which is Peter’s Day +100 since transplant. If he doesn’t get the treatment here in Minneapolis, then it looks like NYC is in the Eigner’s future and… well… we’ll see.

What they do know is that the antibody treatment is no picnic. From what I hear, parts of it can have some ugly side effects. That made the decision to enroll for the treatment all the more difficult, but they believe it’s best for Peter. I really can’t grasp how tough it would be to make all of these decisions. The emotional weight, the what-ifs, the conflicts with one’s daily life, the fright, and the obtuse medical terminology must all collide to create a dense fog that blocks out reason and clarity. Yet Ty and Erika are seeing through it all, time and again over the past 9 months, to simply do what’s best for Peter.

Here’s to good test results and good news on Monday. (as i tip back my mug of coffee)

The Eigner’s passed a milestone over the holiday weekend. They packed up Peter and the girls, left my house, and headed HOME for a few days. This is the first time in three months that Peter has been able to leave the hospital’s proximity. His platelet counts haven’t been great, but his overall health seems stable. Most of the weekend away was spent at Grandma and Grandpa’s with cousins playing baseball (of course), playing ladder ball, boating, and learning sudoku. He was able to see some close friends, too.

This morning he’s back in town for his second-to-last radiation treatment. He wraps up that phase tomorrow and puts another milestone behind him. Yet the road ahead remains long and uncertain. The message on the hockey rink sign that reads “Keep Fighting Pete” has never had more significance.

Next week Peter will go through the same periodic tests (scans, marrow, etc, etc). This time these tests are also used to determine his placement for the next big phase of treatment — Antibody Treatment. This treatment is officially in “trial” at the U of M, meaning some patients that elect to participate will get the antibodies and some will get an alternative treatment. We’re all hoping that Peter gets the antibody treatment and can continue being treated here at the U of M. If he is not accepted here, there is a clinic in New York City that offers the antibody treatment to all patients and Peter will go there. In that case, the Eigner’s logistical dilemmas will only get more complex.

Peter is doing very well, but there are reasons to go through this optional treatment that has side effects (as all treatments do). This cancer is very aggressive and can recur. Peter was diagnosed with the unfavorable histology, which, in my unscientific language, means it’s hard to kill off. Recurrence of Neuroblastoma is really bad. I don’t know how else to say it. It needs to be destroyed the first time around. Ty and Erika believe that the Antibody treatments are the best way to ensure cancer doesn’t return. The specifics on how the treatment is done are different depending on the clinic, but it could be about a five-month treatment involving lots of hospital time.

The battle continues. Peter is winning, but the miracle isn’t complete. Once you get the lead, you need to fight that much harder and eliminate the opponent’s chances.

Peter is still doing very well. His radiation treatments are quick and simple for him. He swings into the hospital, gets a quick treatment, and leaves. The treatment can make him a little bit worn down, but he still seems to be gaining energy compared to the past couple months.

His hair is growing back, too! I mean, you can see the change every day. His eyelashes — remember those thick, black things? — are sprouting thick and black again. And his blonde hair is returning as a noticeable fuzz.

Remember this?

It’s coming back.

I also posted many new pictures in a new format. These are from Round 7 and the BMT. And these are since his release from the hospital during the 100-day journey.

The report card is shaping up nicely.

• Bone Scan: Negative!
  No visible cancer from this test done last week.
• CT Scan: Negative!
  No visible cancer from this scan of his whole torso, head, neck.
• Echocardiogram: Negative!
  His heart sounds good.
• Bone Marrow Biopsy: Negative!
  Marrow remains clear.
• MIBG: Negative!
  Nothing lit up. Nothing.
  
• Audiogram: Upcoming
  Eager to know how his hearing is holding up.

If you’d like more good news this fine Friday, I have some. Peter started radiation yesterday already. They are radiating the tumor bed in his abdomen to make sure it never gets any life back. Ty and Erika were eager to get that underway, but it could only happen when his counts were back up.

Things are otherwise good, as well. He’s been eating enough since being off the TPN “food bags”, but we’re always pushing for more. He announced his new favorite food is spaghetti. Here’s some proof that he’s returning to his active ways.