Author: Erika

Peter has finished his first round of antibody treatment! I am very happy to report he has had no pain (yet!) today, which also makes me a little nervous that he’s already reached a HAMA response. I don’t recall if it’s even possible for that to happen over a weekend like this, but it does make me wonder. We won’t know until a couple of weeks from now if he’s reached it or not. (they want him to get 4-6 rounds prior to reaching HAMA) His primary doctor out here did bring some unsettling news earlier today. He said they (the Neuroblastoma team of docs) have been debating now for about 5 days, and are continuing for another day or two. We were told awhile back (at U of MN) that there is something that shows up on Peter’s scans in the tumor bed area (abdomen). Because it did not light up on the MIBG scan, and after careful reviews of the scan, they believed it to be scar tissue, but said they would definitely be following it. Apparently the team out here is not totally comfortable with that. They are considering doing another surgery in about 3 weeks. If they do it, they will go in to see exactly what they find. If there is disease, I assume they would be taking it out if it’s safe to do so, but they would also radiate directly to the site while they are in there. We are not sure how to feel about this. They don’t want to put Peter through another major surgery, but they also don’t want to let any potential disease go undetected. They reminded us that neuroblastoma is a very sneaky disease, and the surgery they did at the U was quite complex, and the tumor was up behind the pancreas, wrapped around some things, etc. So we will wait-We hope to know in the next couple of days what the plan is. This would delay the next antibody treatment. We will update once we know more. As we know you are, please keep Pete in your prayers…

Sorry for not updating sooner – we’ve had limited internet access! First of all, we are very fortunate to have wonderful accomodations at Uncle Matt/Auntie G’s friends’ place which is 11 blocks from MSKCC. And a huge thanks to Uncle Troy’s friend Stack for the outstanding tickets to yesterday’s Twins v. Yankees game. We hear they showed the Pete-man on tv! We were really close to the Twins dugout and saw batting practice before the game. I’m sure Ty would go into much greater detail about the stadium and it’s history, but I will leave it at “it was very cool to be there!” After the game we took the subway back to the Upper East side and then walked for a couple of hours – all the way down to Rockefeller Center. Peter was sleeping in the stroller, so we kept on walking, despite the rain. We wanted to take advantage because on treatment days, we are not spending much time outside.
The antibody treatment has been quite an experience thus far. Despite other families telling us last weekend that they equate the pain to childbirth (and the doctors telling us the first week is the worst), for some reason we still weren’t prepared enough! I guess I can see why they say that. Peter has been in the “early group” so we get to the clinic at 8am, and they give him lots of premeds (Tylenol, Benadryl, Visterol and Dilaudid – a narcotic) to get him as comfortable as possible. But the pain is severe and difficult to watch. Sometimes we can hold hot packs on his legs and feet, or cold packs on his head because he gets so sweaty, but typically it hurts him more to be touched. It goes in spurts, and he sleeps a lot in between the pain. The pain gets better as the day goes on, but even when he wakes later in the day/evening, he is pretty cranky (irritability is the biggest side effect of the dilaudid). We are trying to get outside and walk a lot with him in the stroller, but can only do so much.
He may be admitted Sunday-Monday for his last day of treatment because he was exposed to shingles/chicken pox at the conference in Chicago. They take no chances with this because for immuno-supressed people, these things can be very bad. We thought he was going to be in-patient tonight and tomorrow but they calculated when he may have been exposed, and when he would potentially get it or carry it, and now they said just Sunday-Monday. So we don’t know what tomorrow will bring… they will let us know where to be and when to be there!
If all goes as planned, he will have another treatment tomorrow, his last one Monday, and we’ll fly back Tuesday. Ty is leaving sooner to get back for some coaching he is doing in St. cloud this week.
We will test for HAMA response 2 weeks from today. If he has reached HAMA they will call us to discuss whether they will give him more chemo in an attempt to knock counts down to do more antibody treatment (the goal is 4-6 rounds of antibody prior to HAMA). If he doesn’t get a HAMA, we’ll be coming back the first week of August. We cannot wait to be home for 3 weeks in a row!!!

Our flight to Chicago went great. So did the 2-hour van ride to the hotel, with the exception of thinking we were going to die on the way. The driver was actually hilarious; talking and telling stories the entire way (mostly about the company he works for – apparently they have no problem taking your money for ride, but they don’t have enough drivers because most who applied could not pass the drug tests afterward to be hired, blah, blah, blah). We weren’t really sure if he was watching the road/pedestrians while driving, but we made it! So we got here in time to get to the dinner last night and met some of the families whom we’ve “met” online. It’s a funny thing with Neuroblastoma (and maybe many other cancer’s) – it’s a very small world. People contact you when you are diagnosed via the website to help you, because there isn’t nearly as much known for this disease as there is for, say, leukemia. So you learn quickly to lean on these people… for a lot. Sometimes we communicate phone, but more by email and each other’s websites, so to meet in person is pretty neat. The sessions began about 9am this morning. We dropped Peter off in the Kids Room. They have volunteers that entertain the kids the entire day (9-5), today and tomorrow. They had TONS of kids so I can’t imagine how exhausted they must be! Tonight they had a dinner & DJ. We barely had time to stop up to our room and change clothes to make it back downstairs. We got through about half of our dinners and Peter was falling asleep while eating, so we came back to the room early. The conference has been great. We have met quite a few families, and the speakers are outstanding. I’ll be honest – there’s a lot of information that has gone right over my head! It’s a pretty empowering thing to be here with all NB families, and it’s a bit emotional too. There are “angel parents”, something no parent should ever have to be, and I am guessing many parents here have kids with relapsed disease. Everyone is so hungry for information; we are all just yearning to hear that magic word… CURE. It’s amazing how these doctors have dedicated themselves to this, even when there are only 650 diagnoses a year. Tomorrow will be another full day for us and for Peter, and then we’ll get together with a great friend of ours (Pete) who lives here in Chicago.
We are anxious for Peter to start 3F8’s (antibody) on Monday. For one thing, we started giving him shots in preparation for it on Wednesday (daily for 13 days). This in itself is torture, so i’m hoping once we are there they will do it for us! Torture is the only way to describe it. We thought for sure Child Services would be at our hotel door 2 days in a row now the way he was screaming. Anyway, I’m hoping once we get out to NY, we can find a better way (i’ve heard of a catheter they can put in the back of his arm where we can inject). We have been warned about the pain associated with antibody and especially the first round before they can adjust the meds for him but it takes some time. We have heard more than once now that we might be spending a lot of time with him sleeping/resting after the treatments. This is the reason Ty and I both came on this trip as opposed to our trip last week. It should get a little better with each round.
We hope to be able to see a lot while we’re in NY, but if he may need to spend a lot of time resting. Except that Twins v. Yankees game on the 4th (his day off of treatment)! It sounds like we’ve got some tickets to see them on the 4th so that will be fun. Erika & Ty

Be forwarned: I am writing this more out of frustration than anything, but also wanted to let you all know what we know and what the NY plan looks like as of right now!
We got home Thursday afternoon from NY, and had a great weekend – beautiful weather, lots of boat time. Due to that, thought it was much more important to spend time with the kids so didn’t get much done. On Friday I spent much time on the phone with doctors, insurance, pharmacies, etc because we are to start giving Peter shots of GM-CSF today, in order for him to start treatment on Monday. We are leaving for Chicago tomorrow morning for a Neuroblastoma Conference which only happens once every other year and there are outstanding doctors speaking and lots of families – “angel parents”, families of children being treated now, and in the past. We’re excited about going. Not excited about leaving the girls for another 12 days. So we’ll be there tomorrow through Sunday and fly to NY from there. Because they are a clinic (Memorial Sloan Kettering Cancer Center) they do not work on holidays and his treatment is 5 days, so he’ll be treated M, T, Th, F and again Monday the 9th. I found out at 6:30 last night that the pharmacy we are working with didn’t ship the med out to us. Did I mention that Peter NEEDS to start this today to be able to start treatment on Monday? I think I did. So between laundry, unpacking, packing, being mom, working, I don’t have much time, or patience, for these little mishaps! I am now waiting to hear if the pharmacy will courier it up to us today since they tracked 1 dose of this stuff down in the cities(unlikely), or if one of us will be driving down and back to pick it up today. UGH!
Well, let’s assume this all gets squared away (preferably within minutes of now!)
First round of 3F8 antibodies next week.
Home for 3 weeks (and sometime while we are home we will find out if he’s reached HAMA)
If he reaches HAMA before they get 4 rounds of antibody, there may be more chemo in Peter’s future. They may need to do a round (still pretty high dose but they would try to avoid chemo with toxicities to hearing, heart, kidneys, etc) to knock his counts/system back down to try and continue with the antibody treatment until he gets 4 rounds. I guess it’s pretty crucial to get 4 rounds.
If he doesn’t reach HAMA, we’ll go out 1 week out of every 4 until he does reach HAMA.
The ideal situation would be for him to get 4-5 rounds in before he HAMA’s, but they think that is unlikely.
We will take it a round at a time.

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!

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!!!

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.