Peter’s Page

Even though we had our first sighting of snow yesterday I can tell you that the entire family is very excited to be home. We are again trying our best to get back into some kind of normal routine. Although with three children five and under, Normal and Routine do not usually go together. Peter is back at school and really enjoying it, Ellie also goes two days a week and Kate demands to go into school when Erika or I drop off Peter or Ellie. As Uncle Matt said, the trip to NYC turned out to be not much of anything, but we still made the best of it. We are not dissappointed that Peter did not get the stents put in, being that his kidney function even though decreased is still fine. His blood pressure has come down to the “high end” of normal, and after all his body has been through we can live with that. Peter looks great, is eating very well, has very good energy and is starting to fill out again. We look at all those things as very positive. Peter and I did get a chance to go to New York Presbyterian Hospital and see some of the Doctors and Nurses who did such a fantastic job. It is a very humbling feeling thanking someone for helping save your son’s life. As it is just as humbling saying “thanks” to all of you for your generosity, love, support, prayers and caring. We are truly very fortunate and would not have been able to get to this point without all of you. This past Saturday Peter, Erika, Troy, Michelle, Gramma Mary, Matt, Michele, Gramma Poopster, Grampa Poopster and I attended the Childrens Cancer Research Fund Gala and had a great time. Peter looked great in his tux and fancy hair! We are so proud of him for not only his butterfly drawing, but for how he has handled this whole thing and what he will become in the future. Well I won’t ramble, I just wanted to touch base prior to next Monday when hockey starts and the ROUTINE really gets fun!

Ty

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.

Those who would like to come but are unable to make it for the happy hour and
dinner are welcome to come later for the live entertainment and silent auction!

Doors open at 8pm.  No entry fee but donations welcome.

The benefit is coming up this Saturday and if you haven’t signed up, there is still space available. Please contact Troy to reserve your spot(s).

Troy Eigner
Click to email Troy
612.867.4202 (cell)
763.494.2368 (work)

I apologize for a delay in posts. I was in NYC and, although I passed by the hospital a couple times, I was happy that the trip had nothing to do with the hospital family lounge or beeping machines or the like.

While I was away, there was some excitement — both the fun kind and the scary kind — but all is well today. Peter had a great Saturday with cousins and family at Octoberfest at Ruttger’s Resort. I understand he was very active. Maybe in part because he has been eating like a horse as he’s been on an appetite stimulant. Apparently it’s working!

Then on Sunday he had the treat of attending the Wild game versus the Avalanche, which is always fun. However, something wasn’t going right on Sunday and his left side was hurting and his energy was down. His side pain was suspiciously close to the left kidney area.

So he was back at the U of M hospital on Monday to get things checked out and he was feeling much better at this point. The blood work and all came back clear, but it probably did have something to do with that kidney and a possible spasm or blockage of some kind. I suppose this is the kind of thing that next week’s procedure will help to eliminate. But all is better this week after that slight scare.

The plan as we know it is to be in NYC from Monday to Friday next week for the kidney stent. And that means we get to see Peter’s smiling face at the benefit on Saturday. I can’t wait.

Ty and Erika received more information about the upcoming procedure and it has mainly eased the anxiety. The procedure should be simple and may only require one night in the hospital. The fact that it’s a procedure and not a surgery is calming in itself. They believe that the left kidney is not functioning well due to obstruction of the left ureter, which carries urine from the kidney to the bladder. This stent should help.

Given the difficulty of the last surgery recovery and the setback in strength that ARDS caused, any procedure can wear the parents’ nerves. But knowing that it’s pretty straightforward and shouldn’t require much recovery is helpful.

There still isn’t a real treatment plan in place (as far as I’ve heard), but it will come in time.

First a note on the benefit…
If you’re planning on attending the benefit, please email or phone Troy Eigner as soon as possible — even if you’ve recently sent a registration form. The mail lags behind a more accurate head count is needed. Spots will only be secured with payment.

Troy Eigner
Click to email Troy
612.867.4202 (cell)
763.494.2368 (work)

Second on my list is some good news. Peter’s bone marrow tests are clear of neuroblastoma. Wait, that wasn’t good news. That was great news. Good news is that Peter spent 2 1/2 hours in his kindergarten class on Tuesday morning. He’ll return again tomorrow for a bit and ease into it further after MEA break. He loved every minute of it.

Moving on, Erika had quite an evening. At 5:30, Kate swings on the weight set bar, falls off, splits her forehead. They speed to the ER. Kate’s forehead is literally glued together. The cut was not quite an inch long, but it was deep.

Back home, making dinner while Ty’s at the rink, Kate removes her poopy diaper. Erika jumps into action and on the way notices that Ellie has written on the couch with black pen. Erika turns back around and Kate is pooping on the shag carpet. Ahhh parenthood.

And then an email comes from the hospital with the news about clear bone marrow tests, as well as an updated plan. Unfortunately, the plan as communicated in the email had very few details, raised more questions than it answered, and left a pit in Erika’s stomach. Apparently Peter is in for a “cystoscopy with retrogrades and placement of a left ureteral stent” on the 30th or 31st (Halloween). This has something to do with preventing further injury to Peter’s left kidney. The doctor’s are the best, so there is a a rhyme and reason, but when only part of a picture is revealed it can be confusing. Or it leads the mind to conclusions, good and bad, that may or may not be accurate. I can only imagine that this is not a fun exercise when the subject is your child’s health. I don’t even want to speculate on what this means, so I’ll just try to post the facts as they become available.

What a surreal ride. Ty, Erika and Peter alike are doing an amazing job hanging on at every turn.

Here’s a picture of Peter with his usually angelic sisters at the fireman’s chili cook off in NYC.

As I wrapped up the last post, the 3F8’s were canceled and the Eigner’s were waiting on test results. The kidney scan results came back and, after reflection, the results are somewhat confounding. He is getting a third of function or blood flow to one kidney and two-thirds flow/function to the other. That doesn’t sound good, but the doctor said it was okay. But is that “okay” for an NB patient, since many patients lose kidneys? Or will the kidneys heal themselves if they aren’t subjected to major chemo? More questions are being raised.

Everything seems unsettled. Peter is plugging along and doing great; His day-to-day comfort and improvement should be the center of focus and is reason to be very thankful. Yet it is a scary time and the future is vague, to say the least. The statistics are consistently drilled home from medical staff; Most patients relapse in the first one or two years and there is no known cure for recurrent neuroblastoma. Even though his current scans are clear (bone marrow results aren’t back yet), a few cells here an there won’t show up on scans. And those cells would constitute disease and multiply.

So treatment has to carry on in order to stifle any awakening cancer. What the treatment consists of isn’t known and seems complicated. Peter had another go with the 3F8’s, but that didn’t last. They will try to get him back on the antibodies at some point. He is back on a cycle of the accutane pills (the acne medicine mentioned before), which is great. Apparently the consensus is that they would be continuing with more chemotherapy of some sort if it wasn’t for ARDS and Peter’s weak state in recovery. Yes, this does conflict with an earlier post. Chemo is no good, but it’s a necessary evil and it’s frustrating to think that maybe he’s not getting what he needs because of ARDS. There will be more treatment and it will become clear in time, but it is difficult to remain focused on the positive with an unsettled future.

BENEFIT

Speaking of the future, the benefit on 10/27 is QUICKLY approaching. I would say there’s a 90% chance that Peter and family will be in attendance (nothing is 100% in this battle). It’s shaping up to be a blast with live music and good people. Please, please get your registration in to Troy today. We need the registrations by this Saturday, the 20th.

Here is the registration form again.

Monday was a relatively good day. Peter started the 3F8’s while Ty and girls flew back to Minnesota after the fun weekend. The first day of 3F8 antibody treatment went well, considering that this can be a painful treatment. Peter developed some hives, which is not abnormal, but he was mainly comfortable.

Yesterday the treatment continued and the hives increased. They’re probably in his throat, because he had some trouble swallowing. Then later in the day, Dr. Kushner spoke with Erika a shared a couple developments. First, the CT scans of Peter’s abdomen/torso look clear! I don’t want that great news lost in the story, so I repeat, the abdominal scans look good. However, he also reported that Peter’s HAMA count looked “a little high” and they may not continue antibody treatment on Wednesday. This was confusing to say the least.

So it’s Wednesday and the treatment has been canceled. The bone marrow biopsy and the renal scans (kidney) have been moved up so they didn’t have to spend the remainder of the week in NYC doing nothing. And as I write that, I realize there was a bit of news I didn’t capture in earlier posts; He is getting a kidney scan as a precaution.

Ok, so what the heck is going on here with the HAMA stuff. Apparently, his labs from Tuesday after treatment showed Peter as HAMA positive, even though his labs just before he started on Monday were HAMA negative. That seems strange. But apparently giving the 3F8’s to a HAMA positive patient can cause an anaphilaxis response — breathing issues, to be simplistic. With the hives getting worse and a positive HAMA test, they don’t want to chance it. I would say Peter’s had enough breathing issues already.

I’ll get more information on what this means for the future of 3F8’s, but there is a future. Erika changed flights for the third time in this trip and they will be returning tomorrow. We’re just hoping for good results from the remaining tests this week.

The Eigner clan had a fun-filled weekend in New York. The Chelsea Morrison Foundation sponsored “A Day in the Country” on Saturday and the neuroblastoma kids and families took full advantage. They journeyed into upstate New York and went to an apple orchard where they picked apples, took a hay ride, and picked pumpkins and raspberries. Then they went to the oldest restaurant in the country(?) for dinner. The kids thoroughly enjoyed it.

On Sunday the plan was to take a boat to a restaurant where the NYC firefighters were holding a chili contest with live music and fun for the kids. I haven’t heard about that yet, but it must have been fun.

I believe the 3F8 antibody treatment is starting today.

I got hold of this nice picture that Peter’s Grandma Mary took when we met Peter and family at the airport after returning from the ARDS episode. Looking back just a month ago, it is clear that Peter was looking a little sunken, but he’s up and out of that stroller now.

The results are back from the MIBG and CT Scan of Peter’s head and neck area and they are all clear. There is no evidence of neuroblastoma. Every clear test result is such an enormous blessing. Feel free to celebrate in your own way. Do a jig in your office and get some strange looks.

The torso CT scans have been rescheduled for Tuesday and the bone marrow test is on for next Friday. Let’s hope for more passing grades! The little man is doing great. And we should hope for limited side effects from the antibody treatments next week (As soon as I get excited I am reminded that he has more to endure).

I’m stacking up two posts today, so don’t miss the previous post about the benefit. Have a great weekend!

Sign up now for the October 27th benefit. Space is limited. Get all the details by following the link below.

I understand that the menu was created by Peter. There will be live entertainment, a putting contest, and more. Hope to see you there! It’ll be a blast.

Benefit Dinner Sign Up Sheet