Author: Uncle Matt

Peter was stabilized overnight. The respirator has moved his oxygen level up. We believe he is moving in the right direction. We’ll take that, but it’s no less scary today.

eleven of us, including Peter’s sisters, flew out to Ny early this morning. We’ve taken turns seeing him. He has tubes down his throat and nose, and IV lines coming out of his feet and arm. The respirator is pumping air into his lungs. Peter is intentionally paralyzed so his setup isn’t disturbed by movement. He has tape on and around his mouth and nose. His eyelids are slightly open, but his eyes don’t move. We can grab his hand and rub his arms and head while we tell him how well he’s doing and encourage him. It is the hardest thing to see him right now, but we just know he hears us and is excited that his sisters have come to see him.

While writing, Grandma Barb said he moved his eyes a bit. Erika asked how he’s doing and asked him to squeeze her hand. He did.

It’s 7:00 PM CST. Peter is in critical condition. The pneumonia is attacking both lungs. He’s going on a ventilator for a minimum of two weeks, as they throw every antibiotic possible into him. He will not be responsive for some time.

They’re trying to get him back into ICU. I don’t know what else to write. Just pray.

Peter moved back to the hospital (out of PICU) late last night. There isn’t really anything too new other than that. He’s about the same and drugged up pretty good. There isn’t any news back from pathology on the tumor and they haven’t had a more detailed debriefing on Peter’s overall battle. The days are still consumed by recovery, hour by hour.

I ordered the Peter’s People t-shirts this morning. And I had to order enough to cover all 140 shirts that were ordered. Are you all great, or what? Thanks so much. The proceeds are going directly to help Peter and that feels good. When I get all the math done — which takes me longer than some — I’ll post the final contribution figure.

It’s Tuesday and things haven’t changed too much. Peter remains as still as possible to avoid pain, so even eye contact is rare. He did get up and walk to the window and stood for about 10 minutes. He took a ride on his pole for a little ways. He occasionally coughs a bit, but hopefully the coughing will increase; Some good coughs are necessary to clean out those lungs, but it just hurts too much still.

He should be turning the corner any time, and if it’s like the surgeries before, once he turns the corner, he starts perking up quickly. It is likely that they will be moved out of ICU today and back into the hospital. When I spoke with Erika, they were checking on room availability.

Thanks to our friends, Matt and Allison Slater, for opening their home to the Eigner’s during their time in NY. They live just a few blocks from the hospital and Erika and Ty have been able to alternate between sleeping there and in the hospital. Peter has also stayed there during consultations and before checking into the hospital. He makes great use of their Ms. Pac-Man tabletop arcade game.

Just a reminder that today is the last day for t-shirt orders. Over 85 more shirts 100 more shirts have been ordered so far! Thanks so much.

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.

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.