Month: April 2007

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.