Month: July 2007

The Relay for Life was great. It was a beautiful night filled with family and friends, laughter, and some tear-jerking moments. Peter did a great job as honorary co-chair. He gave a quick little speech and led the cancer survivors on their ceremonial lap around the track. Peter’s People (you) raised over $2000 to fight cancer and the whole event raised far more!

I’ll get more photos from the weekend, since mine didn’t adequately capture the event or our team. But this one turned out; It’s the co-chair in Daddy’s arms taking a lap as night falls over Brainerd.

Erika and Peter are here at my place this evening and are flying out to NYC tomorrow morning (Wednesday). Ty will be joining them on Thursday for meetings with the Sloan-Kettering doctors and staff. Then the surgery will happen on Friday sometime and will likely be followed by a week of recovery in the hospital.

It sounds as though they are determined to get Peter 4 to 6 rounds of antibodies yet, even though he has reached HAMA. Here are two possible scenarios:

1. The mass turns out to be scar tissue. They wait for his HAMA levels to drop, or they weaken his body and lower the HAMA levels with chemotherapy, and then continue with antibody therapy.
2. They find neuroblastoma in the mass. The mass is removed again and the site is radiated. More chemotherapy treatment is administered, his counts drop, and 3F8 antibody therapy resumes eventually.

Everything would happen in NYC in either scenario. Keep in mind that these are just possibilities and I don’t think anyone would be surprised if a variation or third scenario arises.

Well, we went through all of our t-shirts for the Relay for Life, but I am going to have more made up for anyone interested. Please submit your orders by Tuesday, August 7th.

Here’s the deal; The proceeds of this sale will go directly to Peter’s Benefit Fund. The t-shirts are quality Hanes Beefy-T’s and are $25 each. I’ll send you the shirt(s) or get the order to you directly if possible.

Order your Peter’s People t-shirts here!

Let me know if you have questions.

Peter reached HAMA after one round of antibody treatments. This means that his body was strong enough to develop its own antibodies to the foreign antibodies. So subsequent rounds 3f8 antibody treatments would not be effective. Ideally they can administer four rounds of antibody before the patient reaches HAMA, but enough time had elapsed between Peter’s last round of chemo and the beginning of the antibody treatment to allow Peter’s immune system to regain strength and reach HAMA quickly.

So that’s the end of antibody treatments for now, but things can change quickly, as you know from following this journey.

The third surgery is right around the bend and the future plans are dependent on the results. Will the mass showing on the scans simply be scar tissue, as assumed? We certainly hope so. Will the surgery find neuroblastoma? We certainly hope not. That result would lead to further chemotherapy in NYC.

The fight and the journey continues. Tomorrow night is the relay for life in Brainerd and I’m certain we’ll have a good time. I picked up the Peter’s People t-shirts this morning. We’ll probably have extras after the event that I’ll put up for sale to anyone interested. They are white shirts with the following designs.

Crest on the front:

Design on the back:

I’ve posted some photos from June. Grandma Mary took some good action shots at one of Peter’s baseball games.

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.

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!!!