Peter’s Page

Well Peter is having another very good day. He had a very good visit with his Doctors and they told us that he will probably be able to get out of the hospital this Saturday or Sunday. We are so thrilled that he continues to improve! He got back on the Bingo circuit today – making up for lost time, he decided to call in 5 times during the hour!!! He also left his room for the first time in about 20 days or so. He took a whopping 625 steps (dad keeps track of that kind of thing)! At this very moment he is eating a feezy pop and enjoying it. They are continuing to wean him off of the pain meds and will make sure he can take his antibiotics orally. He will have another chest CT tomorrow to confirm the pneumonia is under control or gone. We will hook him up to TPN 12 hours/day (IV nutrition) when we relocate to the Ronald MacDonald House.
Peter is surely gaining strength from all of your thoughts and prayers, and Erika and I can’t thank you enough. With the amount of time we spend in the room with Peter we have the opportunity to keep tabs on many other cancer patients that we have met during Peter’s journey, please continue to keep them in your thoughts and prayers. Have a great night.
Ty and Erika

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.

It’s 11:00 am and Peter is still sleeping in his bed beside me, even with some bright sun shining in the windows… tired boy! One perk to this is i’ve been able to listen to Acoustic Sunrise for 3 hours! So last night about 10:30 he decided he wanted to try a little OJ (after telling Uncle Matt earlier in the day that he would not be eating or drinking anything until he leaves and goes home)!. I can’t imagine this felt too good on the throat, but that’s what he wanted. He drank a few sips and then went to bed. The diuretic (sp?) meds he’s on might be making him thirsty- who knows.
They still hear wheezing when they listen to him. We know he has pneumonia, but they are taking some extra precautions, which we very much appreciate. They did another nebulizer treatment yesterday but his lungs didn’t sound any better afterward. Another fever last night. He has something going on with his right eye, where it’s a straight solid red line all the way up to his eyeball. I think it’s a blood vessel that burst, which can happen when you combine low platelets with coughing or throwing up, both which he did last night. A little freaky at first sight! It will heal, but not for awhile and they warned us it could get worse before then (meaning the red could end up covering more of the white of his eye). His eyes have been watery and red for a week or more, and I believe that, combined with persistent diarrhea are the reasons they are going to test him for Adenovirus today. They will also be doing one of the more fun procedures – the nasal wash – today, and a throat culture. He coughed quite a bit yesterday but it was much tighter than it’s been. So the combination of these things is causing them to dig a little deeper.
All-in-all, he was much more talkative yesterday which is always good. He watched the Gophers yesterday and thinks it’s pretty cool that his pal Mike Carman scored the game winner. He helped Uncle Troy fill out his Frozen Four bracket the other day and had the Gophers and BC (where another pal Carl plays) winning, so I think he’s in the money! I think i’m going to have to be the bad guy and wake him in a few minutes- they have to get his weight before noon.

I feel like every time someone called today to ask how Peter was doing, I had to stop and think a minute. He was up very early this morning, likely due to sleeping almost the entire day yesterday. He watched cartoons from about 6-8:30 this morning so by 9am he was exhausted and back to sleep. Early this morning he gave us the “thumbs down” on his throat and mouth, and “thumbs up” on tummy and head. Last evening his temp was up to 102.9 and it persisted through the night into mid-morning. When he was awake this morning he was a little more chatty than he’s been, which isn’t saying too much, but he showed a few “Peter-isms” that gave me a chuckle and I thought were a good sign. Later in the day they told us they’d be taking him down for a chest CT due to 3 days of fevers, just to be on the safe side (they have done 2 chest x-rays but the CT scans show more detail). The official report is pneumonia in both lungs. And despite that, the doctors continue to assure us that he is “well-covered” to handle this pneumonia, meaning he’s on a lot of antibiotics for bacterial, viral and other types of infections. I guess I do need to ask the question (the questions usually come to me about 30 minutes after the doctors have left the room!) – how does one get pneumonia when they are on these antibiotics already? I’m sure there’s a good explanation. We are very confident in the doctors here and appreciate how thorough they are, but we still like to ask lots and lots of questions. He’s asleep now, with another fever (his temp was down for most of the day) and is going to be getting some blood shortly. He had platelets early this morning. He continues to wear the oxygen mask around the clock as the numbers aren’t where they need to be without it.
So at the end of this day, I find myself feeling very calm; happy to be at Day +10 without major complications and things going well in the grand scheme of things. One time on 5B we witnessed the mad scramble of doctors, nurses with medical equipment and other staff answering the call of a “Code Blue” and it stops you in your tracks. Yesterday we witnessed it again (3 doors down) and this time the cleaning staff was in the room within hours of all the commotion. It is this kind of thing that reminds us quickly not only where we are, but also how fortunate we are. Thanks again for your continued prayers for Peter.

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.

I Just wanted to let all of you know how appreciative Erika and I are for your unbelievable support and prayers. Peter is doing a GREAT job. He is handling his situation in a way that would make any parent proud! When the Doctors or nurses come in to check on him, his answer to their many questions is ALWAYS “Good” He has maintained his personality throughout and has won over an entirely new set of nurses. Today he told me he needed a Kleenex, because his nose was running. You see, he does not like to blow his nose real hard because it makes him cough, and coughing hurts his throat. Anyway, he used the Kleenex and I said “you must have a leak in your nose, and he quickly responded, “yeah, I must have a hole in my nose Dad.” Earlier in the day a nurse who is in training met Peter for the first time, and as she watched him in all his glory on the toilet, she said “I just want to take a bite out of him he is so darn cute.” He continues to amaze Erika and I and we continue gain strength from him. So please keep him in your prayers and keep posting on his site he really enjoys us reading them to him.

Thanks and God Bless,

Ty and Erika

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.

Let’s see – where to begin? It’s definitely an oxymoron to say that BMT Day was uneventful, but it was rather low-key (medically speaking) as we had hoped. The staff helped make it special, the clergy came in and had a prayer service & blessing, and it was something we’ll never forget, but we did breathe a huge sigh of relief when the day was done! Despite a pretty potent combination of drugs, Peter stayed awake through both parts of the transplant, had no reaction to the cells going in and didn’t crash until almost 8pm. Vomiting continued and he was up early yesterday morning, off and on, and then went off to sleep for over 3 hours mid-day. He awoke clearly feeling different and having some pain. He started vomiting blood later in the afternoon and this continues today. This was the first real indication of sores in his esophagus. Although he was uncomfortable, he & I played a little board game of baseball last night while watching the Twins on TV, and he still managed to tell me who was at the plate, who scored, they were playing the Yankees at Yankee Stadium, and so on.
Peter continues to say “good” every time the doctors and nurses ask him how he’s doing…amazing. He does not complain so we’ve become pretty good at recognizing when he’s having pain. Today it’s just plain obvious – his cheeks are a little swollen, he’ll barely open his mouth, no smiles, headaches, vomiting, and lots of sleep. The continuous drip of narcotics will begin shortly and the length of time he needs these is yet to be determined. Daily transfusions began today – his platelets were 7k this morning and hemoglobin is in the 8’s. No fevers yet. They aren’t even checking his WBC and ANC for awhile now, as they know those are at 0 (thus the inability to fight off infection). The doctors still feel he is doing great for all he is going through, but warn us it will get worse before it gets better. Thanks for all of your messages and support. We’re so happy to be into the “positive numbers” now!!!
Ps. Please keep all the kids with cancer in your prayers! We have gotten to know many wonderful families here, and they are all battling hard against this disease.

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.