Peter’s Page

Peter is still doing very well. His radiation treatments are quick and simple for him. He swings into the hospital, gets a quick treatment, and leaves. The treatment can make him a little bit worn down, but he still seems to be gaining energy compared to the past couple months.

His hair is growing back, too! I mean, you can see the change every day. His eyelashes — remember those thick, black things? — are sprouting thick and black again. And his blonde hair is returning as a noticeable fuzz.

Remember this?

It’s coming back.

I also posted many new pictures in a new format. These are from Round 7 and the BMT. And these are since his release from the hospital during the 100-day journey.

The report card is shaping up nicely.

• 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: Negative!
  Marrow remains clear.
• MIBG: Negative!
  Nothing lit up. Nothing.
  
• Audiogram: Upcoming
  Eager to know how his hearing is holding up.

If you’d like more good news this fine Friday, I have some. Peter started radiation yesterday already. They are radiating the tumor bed in his abdomen to make sure it never gets any life back. Ty and Erika were eager to get that underway, but it could only happen when his counts were back up.

Things are otherwise good, as well. He’s been eating enough since being off the TPN “food bags”, but we’re always pushing for more. He announced his new favorite food is spaghetti. Here’s some proof that he’s returning to his active ways.

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.

The party was great! The kids all took a whack (or 7) at a pinata and had lots of fun. Between Hansons and Eigners, there are almost 30 people now (11 young kids) so it’s pretty much contolled chaos! It’s 24 hours later and our 3 are still hanging tough – I am glad Peter hasn’t gotten a fever or been too tired today.
We have not gotten any test results yet, but did get a call that his platelets went from 46,000 on Tuesday, to 38,000 yesterday. What a bummer. They had been climbing steadily so we all thought they would be the 50,000 necessary to start radiation on Monday. I don”t know what causes them to drop like that, especially when they’ve been on the rise. Anyway, we don’t believe he’ll be going in to check labs now until Tuesday, when he goes in for the bone marrow biopsy. We do, however, plan to find out results from the ct scans and bone scan, on Monday. Will keep ya posted. Erika

The big day has arrived… Pete is 5! It is true, we are having a party tonight at Uncle Matt’s, including lots and lots of family. It’s really to celebrate Peter and Ellie’s birthdays and they are so excited, they can hardly wait!
Peter is feeling good. We hope he won’t get too worn out with all the festivities. He had his labs checked this morning, and also had a Bone Scan and CT Scans (head/neck, chest/abdomen). We hope to hear results yet today but more likely Monday. He is scheduled to begin radiation Monday and this will be daily for 3 weeks. He will be sedated Tuesday morning for the Bone Marrow Biopsy and have an Echocardiogram in the afternoon, followed by the MIBG scan Wednesday. The MIBG is a big one – they inject a radioactive dye the day before, so it lights up any areas of disease and covers the entire body. He will also have another Audiogram, so we will know if his hearing has gotten better, worse or stayed the same. These are all tests that he has had before; when he was diagnosed, and many times since. They will do them frequently moving forward, and as time passes, there will be a little more time between the tests. We expect good news and will post once we know, and will get some pics of the b-day kids up too!

I can’t believe we’re only half way to 100 days! It seems like Peter’s transplant was so long ago! He is doing well. He did get out of the hospital Sunday and we had lots of fun on Ellie’s birthday. The beautiful weather has played a big part in our fun this week.
I feel that things are starting to get busier again. Ty took Peter to the clinic this morning and his labs were good – getting higher. They let us stop the TPN (iv food) which is great because it’s a bit of a process each night and it’s a pain for him to tote around when he’s awake.
Apparently they are scheduling scans for Peter tomorrow and Thursday (CT and MIBG I believe). This immediately put a knot in my stomach but it’s great that we’re getting to where he will need periodic testing to see if there is anything going on. We believe that we will have even more to celebrate than birthdays on Friday evening! He will have his labs/counts checked again on Friday and barring any changes, he is scheduled to start radiation on Monday! Radiation will be daily, M-F, for 3 weeks. Within a few weeks we should also be able to find out if Peter will be able to get antibody treatment at the U of MN or if we will be travelling back and forth to NY. So after writing this, I guess the combination of these things is why i’m feeling a little anxious – just a lot of things going on at once!
In the meantime Peter and Ellie are enjoying lots of fun in the sun wearing loads of sunscreen!

Well, maybe we “jinxed” ourselves. On Wednesday, Peter and I headed up to his old floor, 5B, to visit a friend Noah who was a roommate of ours earlier this year. He was in for a couple of days. It was fun to him, and we were joking with the nurses that it was great to see them as visitors instead of patients! Thursday, our friend Barry was generous to give us his Twins tickets so we took Peter and we had a great time and then we had a picnic with Uncle Gary and Aunt Jayne where the kids played a lot! Friday started out good – Ty had Peter in the clinic and his counts were still good, no transfusions needed. But by about 2:00 he was on the couch and was exhausted. By 4:00 he had a fever and Tylenol wasn’t bringing it down so around 8:30, Pete and I re-entered our second home on 4A. It was a pretty disappointing night to say the least, and a late one, as they did a chest x-ray, various tests, and got him all hooked up for his stay.
The good news is that by noon on Saturday we were roaming the hallways with IV pole in tow, looking for games to bring back to his room. They have not found any new infections and the fevers are gone, so they will let him go today. The doctors are being kind to see him as early as possible so we can have some fun with Ellie on her 3rd birthday! The “real” party will be Friday at Uncle Matt’s – we’re going to celebrate Peter’s and Ellie’s together.
Grandma and Grandpa were nice enough to take baby Kate late, late last night on their way through town for the week. She’s not feeling so well herself, and it’s a lot to juggle all 3 of them with clinic visits, unexpected things and living in tight quarters. We hope Peter will be able to start radiation later this week. We are looking forward to getting on to this part of his treatment. Thanks as always for being part of Pete’s fight!

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.

I thought I’d put a quick post up, since it’s been awhile. It seems like we’re just kind of moving along day-by-day and I realize a week or more has passed! Peter is doing pretty well. It’s sort-of ironic because we feel like he is getting a little better and stronger each day, and yet his counts are almost as low as they were when he would “bottom out” between chemo treatments. He’s still getting transfusions every other day or so; still on the same meds and they added one yesterday because he has a sinus infection. He has had some leg/foot pain in the last week, which is obvious to anyone who sees him walk, that we are trying to assess, because it doesn’t seem to have any easy explanation (ie: it’s just his new marrow at work). His BMT doc said she will likely do another MIBG scan if it continues into next week. So you might think he is laying around all day? NO! He is playing outside, enjoying the weather, his sisters and lots of family and friends (thank you for allowing us to crash your houses every single night for dinner!) He tires quickly but we are so thankful for nice weather so we aren’t stuck inside all day.
We also met with the Radiation Oncologist yesterday and they believe he’s a week or two away from starting radiation due to low counts. He will have 3 weeks of radiation (14 days with no weekends). These treatments shouldn’t have any major side effects. Fatigue and possibly some nausea because they’ll be radiating his abdomen where the primary tumor was located.
I think that’s about it for now!

WOW! I would like to start off by saying I’m glad we made it through Easter Sunday! Uncle Scott & Aunt Michelle were kind (crazy) enough to host the Hanson’s and the Eigner’s, which consists of 11 kids (10 age 4 and under) and 13 adults. We all thought it would be total chaos, but it was really fun! Yes, the Easter Bunny made an appearance.
Speaking of chaos, the girls joined us here at Ronald McDonald on Saturday – yep, all 5 of us in a 1-bedroom apartment! We are really glad to have them, though. We had not seen them for easily over a month. I have to say that Peter is such a nice big brother. He is genuinely happy to have them here and couldn’t wait to give them each a present he had made and show them all the playrooms here; especially the one with the bubble hockey game.
Well, Peter is doing well. He is getting a little stronger every day. It’s easy to forget what his body is going through because he looks good and wants to be active! Our days are somehow extremely busy after leaving the hospital. He’s still on TPN (IV food) and for the first time today had a fair amount to eat! He has not been eating or drinking much on his own. We hook him up to the TPN each night and it runs over 12 hours. He tested positive for a virus last week so he’s hooked up an additional 2 hours/day to a med to treat that (once AM and once PM, but unfortunately can’t run simultaneously with TPN). I’m pretty sure these meds alone constitute a part-time job. He takes meds orally 7+ times per day as well. And let’s be honest – the kid has lost a little control over his life – so he likes to negotiate his way through each one of theses things (ie: I need something to drink, I have to go potty, I’ll take that one as soon as I can do this or that). At any rate, he gets it done. And then there are the clinic visits. We wheel him over to the hospital each day for labs, doctor visits, and transfusions. He’s getting platelets every other day on average, but with the virus it’s been more like daily. Tomorrow morning he’ll get the combo deal – red blood cells and platelets, an appointment that will take a good 4 hours. But no complaints – they say he’s still doing very well!
We hope to find out soon when he will be able to start radiation. It’s all dependent on counts. They will only radiate the tumor bed (abdomen) and we’re happy about that (originally thought they would radiate where the lymph nodes were infected in neck and chest too). Radiation will last 2 ½ weeks. Starting around Day +60 Peter will start Cis-Retnoic Acid (a strong acne medicine!) as well as Antibody Treatment. We are hoping he is able to get it here at U of M, but if not, we’ll head out to NY.
Seems like a lot of treatment for a kid; especially when he is NED (no evidence of disease)? They treat this disease very aggressively because it’s a very aggressive form of disease. While it is not easy to watch him go through all of these treatments, we know the benefits far out-weigh the risks. So we continue to move forward and are so very thankful for each day and all of the positive results!!!

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.