Month: August 2007

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.

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.