Peter’s Page

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.

Peter has finished his first round of antibody treatment! I am very happy to report he has had no pain (yet!) today, which also makes me a little nervous that he’s already reached a HAMA response. I don’t recall if it’s even possible for that to happen over a weekend like this, but it does make me wonder. We won’t know until a couple of weeks from now if he’s reached it or not. (they want him to get 4-6 rounds prior to reaching HAMA) His primary doctor out here did bring some unsettling news earlier today. He said they (the Neuroblastoma team of docs) have been debating now for about 5 days, and are continuing for another day or two. We were told awhile back (at U of MN) that there is something that shows up on Peter’s scans in the tumor bed area (abdomen). Because it did not light up on the MIBG scan, and after careful reviews of the scan, they believed it to be scar tissue, but said they would definitely be following it. Apparently the team out here is not totally comfortable with that. They are considering doing another surgery in about 3 weeks. If they do it, they will go in to see exactly what they find. If there is disease, I assume they would be taking it out if it’s safe to do so, but they would also radiate directly to the site while they are in there. We are not sure how to feel about this. They don’t want to put Peter through another major surgery, but they also don’t want to let any potential disease go undetected. They reminded us that neuroblastoma is a very sneaky disease, and the surgery they did at the U was quite complex, and the tumor was up behind the pancreas, wrapped around some things, etc. So we will wait-We hope to know in the next couple of days what the plan is. This would delay the next antibody treatment. We will update once we know more. As we know you are, please keep Pete in your prayers…

Sorry for not updating sooner – we’ve had limited internet access! First of all, we are very fortunate to have wonderful accomodations at Uncle Matt/Auntie G’s friends’ place which is 11 blocks from MSKCC. And a huge thanks to Uncle Troy’s friend Stack for the outstanding tickets to yesterday’s Twins v. Yankees game. We hear they showed the Pete-man on tv! We were really close to the Twins dugout and saw batting practice before the game. I’m sure Ty would go into much greater detail about the stadium and it’s history, but I will leave it at “it was very cool to be there!” After the game we took the subway back to the Upper East side and then walked for a couple of hours – all the way down to Rockefeller Center. Peter was sleeping in the stroller, so we kept on walking, despite the rain. We wanted to take advantage because on treatment days, we are not spending much time outside.
The antibody treatment has been quite an experience thus far. Despite other families telling us last weekend that they equate the pain to childbirth (and the doctors telling us the first week is the worst), for some reason we still weren’t prepared enough! I guess I can see why they say that. Peter has been in the “early group” so we get to the clinic at 8am, and they give him lots of premeds (Tylenol, Benadryl, Visterol and Dilaudid – a narcotic) to get him as comfortable as possible. But the pain is severe and difficult to watch. Sometimes we can hold hot packs on his legs and feet, or cold packs on his head because he gets so sweaty, but typically it hurts him more to be touched. It goes in spurts, and he sleeps a lot in between the pain. The pain gets better as the day goes on, but even when he wakes later in the day/evening, he is pretty cranky (irritability is the biggest side effect of the dilaudid). We are trying to get outside and walk a lot with him in the stroller, but can only do so much.
He may be admitted Sunday-Monday for his last day of treatment because he was exposed to shingles/chicken pox at the conference in Chicago. They take no chances with this because for immuno-supressed people, these things can be very bad. We thought he was going to be in-patient tonight and tomorrow but they calculated when he may have been exposed, and when he would potentially get it or carry it, and now they said just Sunday-Monday. So we don’t know what tomorrow will bring… they will let us know where to be and when to be there!
If all goes as planned, he will have another treatment tomorrow, his last one Monday, and we’ll fly back Tuesday. Ty is leaving sooner to get back for some coaching he is doing in St. cloud this week.
We will test for HAMA response 2 weeks from today. If he has reached HAMA they will call us to discuss whether they will give him more chemo in an attempt to knock counts down to do more antibody treatment (the goal is 4-6 rounds of antibody prior to HAMA). If he doesn’t get a HAMA, we’ll be coming back the first week of August. We cannot wait to be home for 3 weeks in a row!!!

Our flight to Chicago went great. So did the 2-hour van ride to the hotel, with the exception of thinking we were going to die on the way. The driver was actually hilarious; talking and telling stories the entire way (mostly about the company he works for – apparently they have no problem taking your money for ride, but they don’t have enough drivers because most who applied could not pass the drug tests afterward to be hired, blah, blah, blah). We weren’t really sure if he was watching the road/pedestrians while driving, but we made it! So we got here in time to get to the dinner last night and met some of the families whom we’ve “met” online. It’s a funny thing with Neuroblastoma (and maybe many other cancer’s) – it’s a very small world. People contact you when you are diagnosed via the website to help you, because there isn’t nearly as much known for this disease as there is for, say, leukemia. So you learn quickly to lean on these people… for a lot. Sometimes we communicate phone, but more by email and each other’s websites, so to meet in person is pretty neat. The sessions began about 9am this morning. We dropped Peter off in the Kids Room. They have volunteers that entertain the kids the entire day (9-5), today and tomorrow. They had TONS of kids so I can’t imagine how exhausted they must be! Tonight they had a dinner & DJ. We barely had time to stop up to our room and change clothes to make it back downstairs. We got through about half of our dinners and Peter was falling asleep while eating, so we came back to the room early. The conference has been great. We have met quite a few families, and the speakers are outstanding. I’ll be honest – there’s a lot of information that has gone right over my head! It’s a pretty empowering thing to be here with all NB families, and it’s a bit emotional too. There are “angel parents”, something no parent should ever have to be, and I am guessing many parents here have kids with relapsed disease. Everyone is so hungry for information; we are all just yearning to hear that magic word… CURE. It’s amazing how these doctors have dedicated themselves to this, even when there are only 650 diagnoses a year. Tomorrow will be another full day for us and for Peter, and then we’ll get together with a great friend of ours (Pete) who lives here in Chicago.
We are anxious for Peter to start 3F8’s (antibody) on Monday. For one thing, we started giving him shots in preparation for it on Wednesday (daily for 13 days). This in itself is torture, so i’m hoping once we are there they will do it for us! Torture is the only way to describe it. We thought for sure Child Services would be at our hotel door 2 days in a row now the way he was screaming. Anyway, I’m hoping once we get out to NY, we can find a better way (i’ve heard of a catheter they can put in the back of his arm where we can inject). We have been warned about the pain associated with antibody and especially the first round before they can adjust the meds for him but it takes some time. We have heard more than once now that we might be spending a lot of time with him sleeping/resting after the treatments. This is the reason Ty and I both came on this trip as opposed to our trip last week. It should get a little better with each round.
We hope to be able to see a lot while we’re in NY, but if he may need to spend a lot of time resting. Except that Twins v. Yankees game on the 4th (his day off of treatment)! It sounds like we’ve got some tickets to see them on the 4th so that will be fun. Erika & Ty

Be forwarned: I am writing this more out of frustration than anything, but also wanted to let you all know what we know and what the NY plan looks like as of right now!
We got home Thursday afternoon from NY, and had a great weekend – beautiful weather, lots of boat time. Due to that, thought it was much more important to spend time with the kids so didn’t get much done. On Friday I spent much time on the phone with doctors, insurance, pharmacies, etc because we are to start giving Peter shots of GM-CSF today, in order for him to start treatment on Monday. We are leaving for Chicago tomorrow morning for a Neuroblastoma Conference which only happens once every other year and there are outstanding doctors speaking and lots of families – “angel parents”, families of children being treated now, and in the past. We’re excited about going. Not excited about leaving the girls for another 12 days. So we’ll be there tomorrow through Sunday and fly to NY from there. Because they are a clinic (Memorial Sloan Kettering Cancer Center) they do not work on holidays and his treatment is 5 days, so he’ll be treated M, T, Th, F and again Monday the 9th. I found out at 6:30 last night that the pharmacy we are working with didn’t ship the med out to us. Did I mention that Peter NEEDS to start this today to be able to start treatment on Monday? I think I did. So between laundry, unpacking, packing, being mom, working, I don’t have much time, or patience, for these little mishaps! I am now waiting to hear if the pharmacy will courier it up to us today since they tracked 1 dose of this stuff down in the cities(unlikely), or if one of us will be driving down and back to pick it up today. UGH!
Well, let’s assume this all gets squared away (preferably within minutes of now!)
First round of 3F8 antibodies next week.
Home for 3 weeks (and sometime while we are home we will find out if he’s reached HAMA)
If he reaches HAMA before they get 4 rounds of antibody, there may be more chemo in Peter’s future. They may need to do a round (still pretty high dose but they would try to avoid chemo with toxicities to hearing, heart, kidneys, etc) to knock his counts/system back down to try and continue with the antibody treatment until he gets 4 rounds. I guess it’s pretty crucial to get 4 rounds.
If he doesn’t reach HAMA, we’ll go out 1 week out of every 4 until he does reach HAMA.
The ideal situation would be for him to get 4-5 rounds in before he HAMA’s, but they think that is unlikely.
We will take it a round at a time.

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.