Author: Uncle Matt

How about a quick report card to begin with. These are the tests that Peter is going through (and has gone through before and will go through again).

• Bone Scan: Negative!
  No visible cancer from this test done last week.
• CT Scan: Negative!
  No visible cancer from this scan of his whole torso, head, neck.
• Echocardiogram: Negative!
  His heart sounds good.
• Bone Marrow Biopsy: No Results Yet
  He was put under today to extract marrow from both sides of his pelvis.
• MIBG: Scheduled for Today
  This is the scan that “lights up” cancerous areas.
• Audiogram: Upcoming
  Eager to know how his hearing is holding up.

We’re all praying that his string of straight A’s remains in tact. His platelets have rebounded to 50000+ as of today, so the latest assumption is that Peter will start radiation on Monday.

Although I haven’t been composing updates as frequently lately — and I do apologize for that — I have been getting a firsthand perspective on Peter’s progress. My wife (known herein as Auntie G) and I recently spent some time in Florida for some R&R and the Eigner’s took advantage of our empty house while we were away. We’ve been back for over a week now and the Eigners are still here, so apparently the quarters suit them better than the Ronald McDonald House. In any case, we’re happy to have the crew here while they need to be near the hospital.

My last memory of Peter before his diagnosis, probably around July 4th ’06, is playing baseball in the yard at my parents’ place (Poopster’s). In those days I was lucky to see him once every two months or so. I would pitch him the ball, Grandpa would tell him to keep his elbow up, and he would give it a rip, then tear around the imaginary bases and finish with a safe slide at home plate. What a joy it was to watch.

After I returned home, the news came that something wasn’t quite right with Peter. Those baseball sessions in Grandpa’s yard grew shorter and shorter and less frequent. Next thing I knew, I’m receiving horrible news from a teary Erika and Peter is being rushed to the hospital in Minneapolis. You know the rest. Ever since then the treatments have been annihilating the cancer and borrowing much of Peter’s body and energy in the process — particularly after the final round of chemo.

But with the return of spring, we’re once again in the yard — my yard this time — and Peter is back to standing on the left side of the imaginary home plate. He’s back to telling me when I make a bad pitch, he’s back to giving the ball a good rip, and he’s back to sliding into home. He’s not fully recovered, but he’s recovered enough to be doing the things he really loves; And you can tell he loves baseball.

Peter was released from the hospital on Sunday. He joined his parents and sisters at my house that afternoon and he was running about and having a good time, so he improved quickly. Thankfully he didn’t have pneumonia. He is looking and acting more like his old self all the time. Now it’s back to living at the Ronald McDonald House and working to raise those blood counts.

Peter had a restless Thursday night. He spiked a fever and Ty was hearing gurgling in his breathing. Then this morning he threw up for the first time in a couple weeks, so they went to the hospital early this morning and he has been admitted once again. He’s been at the hospital frequently for transfusions and tests, but now he’s actually settling into a room for the time being.

The fever is under control now and they took a chest x-ray. We don’t have any expert medical diagnosis at this time, but his experienced parents are guessing that the pneumonia is back. I suppose this isn’t a big surprise, since his counts haven’t rebounded yet. We’ll get more info online as it becomes available.

I have many easter photos that I’ll get online, as well. In the meantime here’s one of Peter and cousin Macy decorating some eggs.

The Eigners were released from the hospital on Saturday and relocated to the Ronald McDonald house nearby. Peter continues to improve. He seems almost normal in many ways. However, he’s not really up for physical activity — walking any distance wears him out. He gets tired more quickly and naps. He looks tough, because his white of his right eye has lingering blood from the broken vessel. But even that’s almost gone after looking very dramatic for a few days, but it never caused pain. He still has congestion in his airway that causes coughing and a runny nose.

As Ty said, he’s getting his nutrition through his lines and it lasts 12 hours. Real food is starting to appeal to him. On his request, I made him pancakes the other day. I also made a hot dog the following day, although I think that was more the adults’ idea. The food doesn’t necessarily stay down and he still has some random episodes of throwing up (like in the grocery store on Monday).

The plan was for Peter to see his sisters this week, but last I heard, they both caught bad colds and need to stay apart. I think that may even keep their parents from seeing them. Bummer.

Aside from all the lingering symptoms, Peter’s energy shines through a little more each day.

Day by day, the real Peter is breaking through. His pain medication has been reduced a couple times, the sores are clearing up, his skin is looking better, and we’re starting to hear some laughs. His fever has been gone for a couple days and his blood counts are rising. He still coughs and sleeps more than normal. He still throws up daily, but the overall improvement is clear.

Ty and Erika will get some discharge training on Friday, meaning that Peter will be checked out of the hospital soon. They need to stay close to the hospital quite a while (maybe up to day +100), so they won’t be headed home, but they should have a little more flexibility.

Just keep on plugging, Peter. You’re doing great.

Peter woke this morning with a very sore throat so his pain medication was increased to the current maximum. As he builds more tolerance to the medication it could be increased more, but optimistically, the pain will fade soon. He slept 90% of the day while recovering under the influence of the medication.

His fever has continued through the past couple days until this afternoon, when it seemed to break somewhat. The fever can be caused by a few different things. It could be a bacterial infection of some sort; Cultures were taken at 4 AM this morning, but the results aren’t back. It could be be caused by some minor pneumonia; A chest x-ray from yesterday showed what might be a small spot of pneumonia, but he has so many bacterial and viral-fighting drugs pumped into him that the doctors aren’t concerned.

Or the fever could be caused from his cells “engrafting” and that would be excellent. The hope is that his blood counts now slowly begin to rise, followed by his strength and vigor. His spirit will also rise, but his spirit really doesn’t have far to go. His spirit has stayed high throughout.

Peter is doing “great” according to the doctors. Given the severity of the treatment, the following conditions are within the scope of “great”.

• His painful mouth sores have traveled to his throat and stomach
• He’s on a pain narcotic called Fentanyl that causes him to sleep more than he’s awake (which is OK)
• Fentanyl makes him very itchy, causing a rash, that is now being treated with Benadryl
• He has a congested throat (mucusitis), but coughing is extremely painful, so his airway can be restricted
• His oxygen is measured constantly and he’s been getting oxygen during the night as a precaution
• He has a “little sucker” (like at the dentist) to remove saliva and mucus from his mouth so he doesn’t drool and to keep the fluids out of his stomach and prevent vomiting
• Periodic vomiting continues, nonetheless
• He has spiked a fever that comes and goes, regardless of the Tylenol

The above conditions are expected and therefore aren’t bad. He’s trying to avoid unexpected conditions and so far, so good.

Peter had a chest x-ray for pneumonia and blood cultures for other infections, because of the fever and congestion. The x-ray came back negative and the blood culture results aren’t back yet, but they expect to get some positive cultures, since his defenses are so low. Again, some infection would be within the norm.

It’s heartbreaking to see him when it’s apparent that everything hurts. If you ask him, “How are you doing, buddy?”, he might only move his eyes to look at you for a second (normally he’s likely to emphatically point at you, declaring that you play him in whatever game/activity/sport is on his mind). A verbal response is painful. Even opening his mouth can cause pain.

So the plan is to keep him as comfortable as possible while he grinds out these tough days. Every cell’s energy is being used to fight right now, but he’ll be playing games with us again soon.

The transplant went smoothly yesterday. Pete wasn’t completely knocked out. He had some med’s to help with pain, yet he didn’t seem to have much. The chemo definitely has a hold of him, but he’s doing as well as can be expected. In the words of his doctor, “He’s doing remarkably well.”

Our little man is hanging tough, even though the chemo is starting to affect him more. He had been throwing up periodically, but on Monday afternoon the vomiting was more frequent and severe. He also woke up on Monday and said he could feel mouth sores beginning and was congested, which is an early sign of mucusitis (sores throughout his digestive track).

Yet, through it all, he rarely complains about discomfort. He may get a little quiet if things aren’t feeling right. And then after he throws up he’s back to being funny little Peter until another wave hits. I haven’t seen him cry in the hospital since he was going to his first surgery back in August and that was simply a scary time. His attitude seems remarkable to me.

Today is bone marrow transplant day. The transplant will be done in two parts, due to the amount of cells to reinsert. The first session is at 10:00 AM and the second is at 2:00 PM. He’ll be pretty well knocked out during both procedures, apparently to help fend off any fevers or reactions to the cells entering his body. There is ample reason to be nervous, but Peter is in good hands as this hospital is a world leader in BMT’s.

During the next two or three weeks, Peter is going to be very susceptible to infection; His defenses are expected to be completely depleted. During this time it is necessary to cut off visitor traffic to Peter’s room. So if you were planning on visiting, it is still a possibility, but it might not be possible to spend time with Peter. Instead you might accompany Ty and/or Erika for an activity outside of the hospital room, since they need to get out occasionally. Please give Ty or Erika a call if you’re wondering about a visit. The number is 612-273-0227. They truly appreciate the support and want to accommodate every visitor, but the current circumstances are restricting.

It’s Day 0, everyone. Thanks for walking this journey with Peter and his family. Here’s to a successful transplant, strength, steady progress, and a complete recovery.

Over the past month, more and more automated spam programs have crawled onto this site and they post comments. I’ve tried to stay ahead of them and have placed spam traps behind the comments functionality. The filters have been effective in catching over 100 spam comments per day, but have also filtered out a handful of good messages over the past two weeks.

So if you posted a comment in the past and didn’t see it, that comment should show up now. I have de-spammed the good messages (or something like that!). I’ll keep an eye on the queue and try to make things smarter. Sorry for the problems. The heartless spam people make things difficult.

Keep the comments coming and have a good weekend!

One more thing…

Peter’s sisters have been visiting the doctors, as well. Yesterday Ellie was diagnosed with a double ear infection, while Kate has pneumonia and RSV. Grandma and Grandpa Hanson have their hands full with the two fevered girls in Crosslake. Hopefully the medication takes hold quickly and they get healthy soon.

Peter will be done with the round 7 infusion at about 1 AM (in 12 hours). He had some nausea and vomiting yesterday, but last night he was active and feeling good. And this morning he woke up feeling well again. He even ate a little breakfast. He’s handling this treatment exceptionally well so far.

His blood counts will be in steady decline now and everyone expects that the next week is going to be rough. Yet he’s always seemed to beat the expectations and we’ll hope for the best. They are starting to add nutrients through his IV proactively, as his appetite is almost certain to disappear for a while.

The news from the doctors has been very reassuring since yesterday. First of all, the “mass” that was mentioned by the BMT doctor was identified by the surgeon as an accessory spleen. Apparently 10% of us have extra tidbits within us and Peter runs heavy on spleen! It looks like a generic mass on the scans, but the surgeon was quite certain he knew what that was and that it wasn’t any recurrent growth; The little nub of a spleen may have fanned out a bit since the tumor was removed. Another doctor today expressed how well Peter is doing overall and specifically with this difficult round of chemo.

I’ll offer this photo as proof of the points above. He’s out of bed and looking good. And there are a few more photos here.