Author: Erika

I don’t want anyone to fall off their chair in disbelief, but our plans have changed! I know you’re not surprised; I wasn’t.
Peter tested HAMA-positive again. In the past we have just had to sit back and wait for his HAMA level to come down (it took almost a year this time), but ideally he would be getting the 3F8 treatments more frequently/consistently, and certainly we look forward to getting to a point where he done with his treatment, and just continues testing every few months! Well, they now have a treatment that lowers the HAMA level. It has only been used with a few kids but has relatively minimal side effects, has worked well to date, and he can do this part locally.
So this Monday, instead of being in NY, we’ll be at the U of M. First we will meet with his local oncologist, Dr. Weigel, who we haven’t seen in quite some time. We really admire her & miss seeing her and the rest of the staff at the U; they are outstanding at what they do & we respect their expertise & opinions. Then he will get a poke & start a 6-hour infusion of Rituxan, which is actually an antibody itself. 2 weeks later he will repeat this infusion, and the following day he will get a low dose infusion of Cytoxan (a chemo he’s had before in a much stronger, longer dose). They infuse slowly as kids can have reactions, etc. We hope for no issues!
We will then re-test his HAMA level and proceed accordingly (to NY if he’s negative, or another cycle of the Rituxan/Cytoxan if not).
To Peter’s delight, this means he misses less school (for now)! First week is going great, except he came home with almost his entire cold lunch, and quite a bit of work to do, and when we asked him why he said because he likes to talk and eat… and talk and do his schoolwork. Ok, so we might have to work on that a little, but at least we know he’s enjoying himself! We have early conferences tonight, then flag football. Ellie started gymnastics this morning and all 3 will start swim lessons soon, since we had to neglect those for a couple of years. Oh yes, hockey is right around the corner too. Life is busy, but great!
While we plow forward with life, we always remember our fellow NB / cancer friends; we’ve seen quite a few lose their battles lately and feel more blessed than ever to be where we are.

I apologize for not posting a “follow-up” to our last week in NY. We made it (well Peter did it! I should never give myself credit for what he has to go through). The girls came with Daddy to the airport to pick us up late Friday night, and Kate, who is a real momma’s girl, ran right past me into Peter’s arms! They love their big brother, that’s for sure.
We spent last weekend up in the Brainerd area for a Hanson family reunion, and had a great time with cousins, aunts, uncles, grandparents, lots of extended family; a big group had traveled all the way from Texas! Thanks for hosting Tom & Judy – we weren’t sure we’d ever get the kids out of the lake!
Ty, Peter & Ellie spent the last 2 weeks at MN Hockey Camps while Kate & I stayed put in the cities, and the kids loved it (so did Ty of course!) They thought it was great to tag along with Dad, stay in the cabin, do some of the dryland drills, see the guys at the rink, and of course spend some time in the pro shop… can you say treats?
I can’t believe summer is coming to an end. We hit the state fair today and have some very tired kids (they just asked what’s for dinner so apparently we didn’t eat enough there!) Peter is excited to start 1st grade next week at All Saints School and Ellie’s excited to be in preschool in the same school as him. I am glad to have them going to the same school since it’s a new place to them. Pete is starting Flag Football tomorrow. He’s counting on his buddies Tucker & Sammy to show him the ropes!
On the medical front Peter is doing well. He had blood drawn on Thursday and we will find out Wednesday what his HAMA level looks like. However, we just booked flights back to NY in 2 weeks because even if he is HAMA-positive, they are now able to administer a drug that wipes out the HAMA. This means he should be able to get 2 more rounds of the 3F8 every 4 weeks. He’ll be due for testing in NY in October too, but after that we should just be heading out there every 3 months for continued testing! Wow, could we possibly on a slow approach back to a more “normal” life?! Stay tuned…
And as usual, we cannot possibly begin to thank all of you enough for all you have done to help us throughout this journey.

3 down, 2 to go! This has been a tough week so far. The main side effect of antibody treatment is nerve pain, and Peter is experiencing his fair share. They pre-medicate him to avoid hives, nausea and help manage the pain, but it is still evident during and after the treatment; it wipes him out! We spend most of each day in clinic (8 to 2) and then we head back to the Ronald McDonald House. He has been sleeping the rest of the days/nights and is on his way to doing that again. He’s having a lot of residual pain in his feet (neuropathy) so they hurt no matter what position he is in; and walking is out of the question. The only remedies seem to be hot packs, me rubbing them until my hands are numb and the pain meds (and a little “Captain Underpants” reading in between!) You know he’s not feeling well when he’s not even thinking about the playroom downstairs. By morning, however, he is happy & ready to go again (albeit with a little more hesitation each day). It might seem a little harsh to subject our child to this, but we hope it is “training” his body to eliminate cancerous cells on its own. And, compared to the side effects of all the other treatment he has had, this is at least manageable and doesn’t carry any long-term issues. So we are taking each day as it comes & looking forward to coming home late Friday night! It’s hard to believe that it’s been 1 year since Peter’s lungs “shut down” and we were told he might not make it… he has come a long way! We do not take this for granted for 1 minute, and we never forget our other friends who are fighting hard or have fought the good fight. We would love it if you could add my Dad (aka “Grandpa Poopster”) to your prayers, as he has just been diagnosed with an early stage of prostate cancer.
Thanks for checking in!

PLEASE say a prayer for our dear little friend Gustavo-Alexis (caringbridge.com/gustavoalexis). We met him, his little brother Miguel and their amazing parents Terri and Big Gus in NY. Little Gus is a beautiful boy and his parents have given everything of themselves to help him beat NB; they have airlifted him home and his family is surrounding him. This breaks our hearts beyond belief and we know the power of your support – you have pulled us through some awful times.
While we’re asking, our good friend Mary from the U is still waging war against NB and is undergoing a new chemo combination. We love this family and want Mary to beat this thing once and for all – she’s a warrior and we are praying for her tests this week to show improvement, or better yet, be totally clean!
Thank you – Ty and Erika

It’s been awhile since Ty or I have posted! I’ve intended to sit down and write quite a few times lately but I just haven’t had the chance. I hope to soon – I have a lot to say (a shock, I know). I wanted to put a link to a nice article done by the Rosemount Town Pages this week. http://www.rosemounttownpages.com/articles/index.cfm?id=19744&section=News
We are really excited about the Relay and looking forward to seeing lots of friends and family! A big thanks to Trent & Melissa for putting together what will be a really fun party on Saturday – if you know Melissa, you know will be a great party!!
Very quickly, Peter is doing well. He has been eating well and playing A LOT. He is playing baseball in Lakeville (yep, Lakeville – that’s another update!!) Thanks to some friends for allowing him to join their team mid-season. He is loving it! He played his first game last night and Ty said he had a great time and hit the ball a time or two! These things all still seem a little bitter-sweet to me, as we just never know what the future holds for Peter and his growth, physical abilities, health, etc. So we cherish the fact that he is participating and fitting right in!
One other thing that is REALLY exciting is Peter is HAMA-negative! We will re-test him in a couple of weeks to make sure he is still negative, since last time we thought he was and went to NY for treatment, he ended up being positive, and it’s very dangerous to treat “positive” kids with the 3F8 antibody. We hope to be heading east very soon for another round of the treatment, and he will have all the tests done in New York in July as well.
I’ll stop here since I could get carried away, but thanks for checking in! Erika

We’ve been on the go! We spent the last week at Camp Sunshine, a 6-day retreat for families of children with life-threatening illnesses (this was one of the oncology weeks). It was really refreshing and a very special week for the 5 of us. The camp is held at Yogi Bear’s Jellystone Park/Three Bears Lodge in Wisconsin. It was a busy week; full of really fun activities (“day camp”) for the kids, lots of playing in the waterpark, and some really quality discussion time for the adults. It is a camp designed as much for the parents as the kids, which makes it really unique. It ends with an unbelievable evening of all kids (cancer kids and siblings) releasing their “Wish Boats” into the lazy river in the water park. The kids make their boats during the week, and they each have a little candle that is lit while they make a wish and send the boats onto the river. We met lots of wonderful people, including 3 other NB families whom we had not met before! The camp was founded in Maine, and I believe they have camps running out there almost year-round! Thank you Donna for encouraging us to go, and a huge thank you to Mrs. Titus, Mrs. Bailey and Mrs. Johnson, Peter and Ellie’s wonderful teachers who have been more than accommodating and understanding about them missing a lot of school lately!
We went straight to Mpls on Friday so we could attend a benefit for our little friend Ella Hauschildt (caring bridge / ellahope) and it was a blast, and a very big success! We had a great time and got to catch up with lots of high school friends.
We got home yesterday afternoon and will head back to the cities tonight to fly out to NY on Monday morning. Peter will have the full gamut of tests again this week. It’s hard to believe it’s already been 3 months since the last round. We are cautiously hopeful that his HAMA level will be lower again; maybe even low enough to get some treatment in the near future? They assure us his level will come down; but some kids’ levels come down in 2 months; some kids in 6 or 9 months.
Best of all, Peter has been able to spend a lot of time lately being a normal kid. I asked him the other day what he wished for, and he said “Well why don’t wishes usually come true?” I said, “What makes you think that?” and he said “I have wished to be happy all the time!” So I guess he has pretty high standards. He is about the happiest kid I know – it’s pretty rare that he gets down or upset.
Well enough of my rambling (once again you can see why it’s a really good thing that Uncle Matt does the writing!) We will get pictures posted of Disney, Camp Sunshine, etc. Matt is working on a new photo album!
We appreciate your prayers as we head into another agonizing week of testing!

Well I guess they call it Magic Kingdom for a reason! We were on Peter’s Make-A-Wish trip to Disney World last week and it was, well, magical. I wouldn’t classify it as a relaxing family vacation but it was so much fun! The kids deserved every minute of it, and that alone was priceless!
Our trip actually began with a nights’ stay at the waterpark hotel in Bloomington where the kids had a blast! A limo picked us up early the next morning and brought us to the airport where we were escorted onto the plane so Peter could go in the cockpit and meet the pilots, see the view from there and take a few pictures. Once in Orlando, we were met by a Make-A-Wish volunteer who helped us get our luggage and into the rental car they had reserved for us. A short drive later we arrived at “Give Kids the World Village’ and boy, that is exactly what they do! I can’t say enough about the accommodations, the hospitality and volunteers (over 1,000 every week!), and the fun they have in store for the whole family! After a little mini golf, a train ride, the remote control boats, it was over to the Ice Cream Shop which is open daily from 7am-9pm! Need I say we tried out the product a few times? They serve 3 meals every day, there’s a carousel outside the “Castle of Miracles”, a “Gingerbread House”, “House of Hearts”, a theater, and on and on… we could have told the kids that was Disney World and they would have been happy!
It would be hard to recap the entire week in one short post, but we went to Disney 3 days (Magic Kingdom for 2 and Animal Kingdom for 1), Sea World and Universal Studios. We spent the last day at Wet ‘n Wild which the kids loved too!
We were joined by Troy, Macer, Grace & Lily and Grandma Mary for the first 2 days, and Grandpa & Grandma Hanson for the next 3. I think everyone agrees the trip could not have been any more fun! The kids were so good (not waiting in any lines doesn’t hurt). Peter thoroughly enjoyed being the “big boy” with his little sisters and cousins. It was very cute how he took the lead to help them meet princesses, go to the next ride or whatever. We were amazed at Peter’s energy. Had we taken this trip 1 year ago when we had originally planned it would have been a very different experience. He has come a long way!
There are many to thank for making this trip a reality. Make-A-Wish Minnesota (especially Molly, our Wish Coordinator!), the Central MN Choppers (bike club who raised funds for Peter’s wish), Give Kids the World Village and all the volunteers. I know I am forgetting many. Since I don’t write often, I probably haven’t done a sufficient job of thanking people since this journey began in August of 2006. Life was a bit too overwhelming to keep up on “thank you notes” which I have felt bad about since the very beginning!! Please know that your support, prayers, gifts, generosity of time and resources does not, and has not, gone unnoticed or appreciated. We talk often (daily?!) about how lucky we are and the unbelievable support system we have…we will never forget. Thank You from the bottom of our hearts!

Sorry for not posting yesterday. Peter slept all day – there is a difference between his sleeping and awake state, even though he is sedated. We were chalking it up to the fact that they were really pushing him on Saturday, with “C-Pap Trials/Sprints”. This is where they turn off the vent for 20 minutes and see how he does on his own. They were very impressed with how he did, although he’s not ready to come off the vent yet. His CO2 levels are still too high, meaning he can take little breaths, but not big enough ones. Anyway, we thought doing those over a 24-hour period may have worn him out. Also on Saturday night, they stopped his antibiotics as all tests had been confirmed negative (meaning we do not know what caused the lung sickness/ARDS). Last night he got a fever – 102.6. They drew cultures right away and gave him tylenol and it went away, and they turned up the settings on the vent to let him rest. He has remained at those settings overnight and they didn’t do any more C-Pap sprints. Not sure if they will do any more today, or wait to see if he gets another fever tonight, etc. We hope this will be a very minor setback. We want nothing more for him to get off the vent and yet we understand this is going to be a huge step for him and they have to be very cautious. They said his amount of lung damage would take a normal person months to recover from, so considering his immuno-compromised state, it will be a long recovery. He will need rehab and PT to be able to walk again, and possibly to even be able to eat and do some “simple things”.
He has been doing so great and we tell him that all the time. He did nod yes to Ty last night that he was scared, so we’re not sure if it was due to the fever or just being a little “awake” and realizing he’s hooked up to so much. Either way, we are trying to help him be comfortable and know he is making progress. Thanks again to all of our family for being out here in “shifts” since this all transpired. It is a wonderful distraction and we know Peter is enjoying all of your company too.

I told Ty I thought he did a great job of expressing our sentiments on his post yesterday and he said “the only thing I forgot was to tell everyone how he is doing today!!!” So this is going to be short and sweet but he’s doing pretty well. He is no longer paralyzed but is pretty heavily sedated still. They are really challenging him with the vent settings – trying to wean him while maintaining safe numbers (we see this as a positive since he hasn’t shown any signs of not wanting more challenge). While he MAY be ready to get off the vent in a week or so, we are getting the impression that his overall recovery will take quite some time. They are not ready to give any timelines yet as he is still in “critical condition”. So we are just trying to stay focused on this recovery (lungs) and will deal with further cancer treatment when the time comes. They are going to try to put a feeding tube in again today. They tried 5 times last week because it is much better to give him food directly into “the gut” than through IV, but it is very difficult to get it down and placed right. The most frustrating thing on a daily basis right now is Peter, when he does wake, is trying to talk to us. It’s hard to see him try because no words come out, and considering he has 2 tubes coming out of his mouth, it’s impossible to read his lips! So we encourage him to relax and we ask him a lot of questions to which he nods or shakes his head. Overall, we couldn’t be more happy about the direction he has gone over the last week.

It’s only been a little bit since Matt posted, but as happens in these situations, we’ve just learned that Peter has a “big pneumonia”. His sats were dropping overnight and required them to increase his oxygen, which is the opposite of what they were hoping to do when we got over here. They did another chest x-ray this morning and are starting him on 3 antibiotics for coverage. They will also be drawing blood cultures soon. His breathing is clearly more labored today and he is sweating a lot; probably because he is working so hard. This is somewhat worrisome, although we hope it will resolve quickly. They hope to keep him from going back to PICU, and said there is an “immediate care” area here at MSKCC that we may move to, to make sure he stays stable. His sats are low and heartrate high so the nurse is on her way to turn up the oxygen again. Please pray that this will resolve quickly with the antibiotics and no major problems!
ps. Thank you for your interest in the t-shirts!

I will make this quick as I just stepped off the unit and am doing this from my blackberry. Ty stayed last night and I was thinking I might show up this morning to find a slightly more alert Peter. He has not opened his eyes but a couple of times as of yet (12:00 est). He is doing fine but one of his lungs has partially collapsed from fluid and lack of deep breaths. They are doing frequent chest x-rays and think it will resolve by tomorrow. He has been wearing a large breathing mask with straps around his head at top and bottom, which forces him to take bigger breaths. They are doing chest pt (they bang softly on his chest and back with a cup-like object). He indicates he does not like this one bit and maybe that’s why he is choosing just to sleep a lot. he fellow said this is a minor setback but he was ahead of the curve so now he’s really right where he should be. We don’t know if we’ll be moving over to the hospital tomorrow or not. Needless to say we are really anxious to meet with his oncologist to discuss what is going on, and next steps. The answers will take some time to unfold.
Ty and I are passing time doing a lot of reading, we get out for a quick meal a couple times, and watching boats of all sizes pass right below us on the East End River. Its a beautiful view and we now have another idea of something we want to do with Peter once he feels better!

This is Auntie Meeses. I am filling in briefly for Matt since he is out of town and currently without computer access and for Erika and Ty as well, since they aren’t allowed to use their phones or computers in the ICU. Here is an update from Erika as of this morning:

“He had a restful night. The nurse said he respnded during the night once by squeezing her fingers to say he is not in pain and he opened his eyes and turned his head when she said I was sleeping on the bed (couch!) Next to him. Then she asked him if he was scared and he opened his eyes wide with his stern brow that we all know, and shook his head no.
He responded to Ty and I a little this morning. He is pretty heavily sedated which is good for now. They will probably try to get him off the ventilator later today but wil still keep him here for a couple days before going back across the street to MSKCC.
We share a room with 2 other little patients and there are 2 nurses and a doctor in the room so the care is excellent.
He has the breathing tube in his mouth, feeding/stomach tube through his nose, the chest tube out the side of his body (for drainage) and the bladder tube…yoweeee!
I am certain this one is going to take a little more time to recover from. The tumor was fused onto the aorta and other arteries, so Dr. LaQuaglia said it took a lot of scraping, peeling, etc, 1 mm at a time. Not to mention all the things he had to move around just to get to that. And probably removed a lot of scar tissue as well.
I think that’s it for now. He’s doing as well as he can right now, and so are we!”

I just spoke to Erika again this afternoon and they have now removed his breathing tube and Peter is breathing on his own. As well, they stopped the pain meds for about an hour today in hopes that Peter would become more lucid. They’ve been using the “thumbs up or down (or in between)” system to ask him how his pain is. Twice now he’s given them a “thumbs down” so they’ve started him on some morphine again to make him more comfortable. He points at his stomach because it (no doubt) hurts and Erika and Ty know he isn’t feeling great but he is doing very well as far as the doctors are concerned. Another day or two is expected in the PICU unit.

Peter, Ty and Erika – We all send our thoughts, love, and hope to you guys in NYC. Hang tough.