Peter’s Page

The x-ray this morning showed that a lung is still collapsed and holds a lot of fluid. Movement is probably the key to getting the lung inflated, but movement means pain, so it’s a struggle. Peter did get out of bed and sit in a chair again this morning.

They have moved into a new room, without a view. Peter’s not up for talking yet — only a few words. He’s not smiling, even when the clowns came in. It’s hard to imagine Peter not smiling, but it’s understandable. He’s just listening to his parents read books, participating in a baseball board game, and playing some old maid as he slowly heals up.

Erika supposes that they’ll be in ICU the remainder of today and maybe all of tomorrow, but that might change quickly. He’s not doing poorly. He has barely had a fever and the nurse expected the fevers to be much worse after such an operation. If he can just get upright in the chair every once in a while, hopefully those lungs will get cranking again.

I will make this quick as I just stepped off the unit and am doing this from my blackberry. Ty stayed last night and I was thinking I might show up this morning to find a slightly more alert Peter. He has not opened his eyes but a couple of times as of yet (12:00 est). He is doing fine but one of his lungs has partially collapsed from fluid and lack of deep breaths. They are doing frequent chest x-rays and think it will resolve by tomorrow. He has been wearing a large breathing mask with straps around his head at top and bottom, which forces him to take bigger breaths. They are doing chest pt (they bang softly on his chest and back with a cup-like object). He indicates he does not like this one bit and maybe that’s why he is choosing just to sleep a lot. he fellow said this is a minor setback but he was ahead of the curve so now he’s really right where he should be. We don’t know if we’ll be moving over to the hospital tomorrow or not. Needless to say we are really anxious to meet with his oncologist to discuss what is going on, and next steps. The answers will take some time to unfold.
Ty and I are passing time doing a lot of reading, we get out for a quick meal a couple times, and watching boats of all sizes pass right below us on the East End River. Its a beautiful view and we now have another idea of something we want to do with Peter once he feels better!

This is Auntie Meeses. I am filling in briefly for Matt since he is out of town and currently without computer access and for Erika and Ty as well, since they aren’t allowed to use their phones or computers in the ICU. Here is an update from Erika as of this morning:

“He had a restful night. The nurse said he respnded during the night once by squeezing her fingers to say he is not in pain and he opened his eyes and turned his head when she said I was sleeping on the bed (couch!) Next to him. Then she asked him if he was scared and he opened his eyes wide with his stern brow that we all know, and shook his head no.
He responded to Ty and I a little this morning. He is pretty heavily sedated which is good for now. They will probably try to get him off the ventilator later today but wil still keep him here for a couple days before going back across the street to MSKCC.
We share a room with 2 other little patients and there are 2 nurses and a doctor in the room so the care is excellent.
He has the breathing tube in his mouth, feeding/stomach tube through his nose, the chest tube out the side of his body (for drainage) and the bladder tube…yoweeee!
I am certain this one is going to take a little more time to recover from. The tumor was fused onto the aorta and other arteries, so Dr. LaQuaglia said it took a lot of scraping, peeling, etc, 1 mm at a time. Not to mention all the things he had to move around just to get to that. And probably removed a lot of scar tissue as well.
I think that’s it for now. He’s doing as well as he can right now, and so are we!”

I just spoke to Erika again this afternoon and they have now removed his breathing tube and Peter is breathing on his own. As well, they stopped the pain meds for about an hour today in hopes that Peter would become more lucid. They’ve been using the “thumbs up or down (or in between)” system to ask him how his pain is. Twice now he’s given them a “thumbs down” so they’ve started him on some morphine again to make him more comfortable. He points at his stomach because it (no doubt) hurts and Erika and Ty know he isn’t feeling great but he is doing very well as far as the doctors are concerned. Another day or two is expected in the PICU unit.

Peter, Ty and Erika – We all send our thoughts, love, and hope to you guys in NYC. Hang tough.

Peter is in recovery at 6:00 PM central time. Ty and Erika haven’t seen him yet, but know he has lots of tubes sprouting from him. He is doing well.

They did not need to deflate a lung and they did not remove a kidney. The surgery was difficult, because the mass was wrapped around the arteries and apparently lymph nodes were fused into it. They took their time and felt that the entire mass was removed.

The initial report on the mass is that it contains active neuroblastoma. It is not known whether this is old neuroblastoma that has been continuing to grow or whether it is a recurrent tumor, but hopefully they can determine that after thorough pathology. I guess the hope in this case is that it is ‘old’ NB.

Confirmation of active NB — new or old — is a heavy blow. Peter’s parents are understandably rattled. We all are. The future holds more chemotherapy and discomforts for Peter.

He can and will get through this. As far as I’m concerned, he’s still on the path to being cancer free. No one promised the path would be straight. Maybe this turn is somehow essential for his full recovery. Peter is resting on the other side of an important and dangerous milestone this evening. Let’s be thankful for that.

Peter went in for surgery at 10:40 Eastern and he wasn’t scared.

The mass has been removed and sent to frozen pathology for a quick look and idea of what we’re dealing with. Then it will go for ‘real’ pathology and that will take 5 to 7 days.

The surgery continues. There may be more things removed before surgery is complete.

So far so good, I think.

The surgery is scheduled for 10:15 AM tomorrow and could last six hours. The surgeon, Dr. LaQuaglia, with a reputation as a miracle worker, hit Erika and Ty with a dose of reality today. This is a life-threatening operation, not a simple inspection. He said the mass is intertwined with arteries (as it was before). The arteries could be damaged and cause bleeding and bowel obstruction. He might need to take Peter’s left kidney.

Yes, this is more dramatic than anticipated. The mass was often referred to as a “little spot”, not a full blown mass winding around his abdomen. Worse yet, Dr. LaQuaglia sees signs on the most recent scans that lead him to believe there is neuroblastoma in the mass. If there is NB, the type isn’t known (new, old, recurrent).

Back to the surgery. This operation will be a horizontal incision beneath Peter’s rib cage, while the other surgeries were a vertical incision directly in the middle of his stomach. His left lung will be deflated. He will have four marrow samples taken from his pelvis. A breathing tube will be inserted and he will be in intensive care for one to three days. The doctor recommended an epidural for post-surgery pain.

A whole pile of fright and dread was heaped on Ty and Erika this morning. Peter will be enduring the physical pain for a while and answers from the pathology will come in five to seven days. There is plenty of reason to hope for success tomorrow and better news in the next week. Peter has surprised us repeatedly over the last year and I believe he will do so again. Nevertheless, your prayers are encouraged.

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!