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
A journal of Peter’s journey
Hey Peter, I hope you are having fun in Chicago. Do you thing the buildings are bigger in Chicago or in New York?? Mom and Dad said there are alot of other kids at the conference so I bet you are having fun.
One of Uncle Troy’s friends called while I was watching Grace and Lily tonight and he said that Stack (another one of Uncle Troy’s friends) got you tickets for the Twins vs Yankees game on the 4th of July. Wow how special is that?? I’ll watch for you on TV. Hey the Twins stomped on the Tigers tonight 11 to 1 and Joe Mauer had his first Grand Slam Homer. That was pretty exciting. He hit the ball almost as hard as you did in your game on Wed. I think he has been watching videos of you and picking up a few tips.
I love you Peter. Tell Mom and Dad I love them too.
Gramma Mary
Ty, Erika and Pete-man~
Sounds like all is going well in Chicago! It is so wonderful that you were able to schedule your NYC trip around this neuroblastoma conference! What a great opportunity for you to get some valuable information… and for you to visit with fellow neuroblastoma families. It’s great that you are able to gather comfort and support from one another…. it’s odd that you would have to encounter childhood cancer in your lives as a bridge-way to meeting these fellow NB families – however, what a blessing, that even in the worst of situations, you can find others who REALLY DO know what you are going through…. and thus, you can cry, laugh, comfort and support one another in ways that none of ‘us’ can! Soak up the information, enjoy your new found friendships…. and remember that we are all out here praying for a CURE, too!
Pete- sounds like you will have a great time, too! How cool is it that they have a “kids room”?!!??! What fun! I bet you have met some great new friends, too! Maybe someday it will be you and your other NB friends who will be the heros of America… finding a CURE for cancer. We know through witnessing your incredible strength, your awesome intellect and your zest for life that ANYTHING is possible. So, who knows… just maybe someday you will be the one to find a cure. It’s entirely possible…..
Somethings in life are predictable…. some aren’t. Somethings in life are fun… some aren’t. Somethings in life we can change, many things we can’t. The fact that you are fighting cancer is on one those unpredictable, not so fun things in life that we can’t change. It sounds like the icky side of your antibody treatments are similar in that they are unpredicatble… not real fun and something that we can’t change. The doctors have forwarned your mommy & daddy that you won’t be liking it too much…. that you could be enduring some pain and discomfort…. and that it won’t be fun. My prayers for this weekend are for the unpredictble, not so fun things in your life to come upon you slowly and with as little discomfort as possible. Hang in there, buddy! As the sign at the arena says….. “Keep Fighting Pete”.
Love you all so much and hope you enjoy that TWINS game! Go TWINS!!
Love, Jen and family
All I can say is WOW….Good Luck…Happy travels…Go Twins!
I hope you are keeping track and are getting all your beads. You must have a bunch , Peter. I can’t wait to see your purple heart bead! My sister Jean is coming to MN the end of July and would love to meet you.
Thinking of you and your family everyday.
Prayers sent your way,
The Musielewicz’s
Ty and Erika,
Thank you so much for the updates. We really appreciate hearing about your journey. I know you stay busy with everything that’s happening.
I feel your pain when you talk about some of those medical things being over your head. I usually hope Cylinda is listening good so she can draw me pictures when we get home. Anyway, God bless your journey. Praying like a warrior.
We also appreciate your updates and look forward to reading them each time . . . always hoping for good news! You continue to be in our prayers. Keep fighting Pete!
Thinking of you all and praying that the treatments for Peter start to go smoother.
love,
Uncle Ed and Aunt roz
Hey Peter! I hope you get to see some fireworks on the 4th! My boys might actually be able to stay up that late this year…we’ll see! Have fun at the Yankee game! Our 4 year old (Nathan) always includes you in his bedtime prayers and sometimes affectionately refers to you as “Peter Pan”… Ha-ha! Our prayers can get a little silly sometimes, but I am sure God is giggling along with us.
He likes to look at your pictures on the computer too, especially the baseball photos and the Spiderman pictures!
Take care and God bless.
Bryan, Tonia, Nathan & Henry Johnson
Hey Guys,
I hope this conference was informational – I wish I could of been there to learn more. I hope that Pete’s 1st treatment went easily and smoothly. I hope most that it was not as painful as you thought it would be. I am at home recovering from my radiation with my family which is a blessing. Keep on truckin’ bud!
Mary Virnig
We are glad to hear things are going so well for you, Peter. We check the site often to see how you are progressing against this fight and it seems so far you are fighting an awesome fight.
The conference in Chicago sounds like it was a good experience and we are happy that you were able to be there to talk and meet those experiencing similar hurdles in life.
Good luck in NYC and enjoy the Twins game on the 4th. GO TWINS!!!!Hopefully the treatments will allow you to enjoy the fireworks too!
Take care,
Jen, Andy, Jacob and Brady
Hi guys –
Kevin, Pete and I appreciate the updates. The conference in Chicago sounds great. Pete – you are quite the traveler – going to the big, big cities. We will want to hear all about Chicago and New York from you.
Olli is here visiting from Finland, and big Pete has kept him updated on how your doing.
Your family remains in our thoughts and prayers –
Kevin, Deb and Pete
Pete-man,
Hang in there bud and stay strong. This 1st round will be over soon. I hope you enjoy the Twins game, Stack says he was able to get you some real good seats. If you get there early have your dad take you around to see some of the monuments. Take care.
Love,
Uncle Roy
Hi Eigners: Hope all is going well in NY and you get some time to enjoy the sights. Peter: you will have so much fun at the ball game tomorrow, you are so lucky to get to go.
We are thinking of all of you and of course are always in our prayers. Hopefully it hasnt been too hard and painful peter.
You all take care and have a Happy 4th. May the angels watch over you Peter and make it easier for you.
Love,
Uncle Chuck and Aunt Rose
Hello and Happy 4th Eigners!!!!
I can only assume that ‘no news is good news’….. and that things are going as “well” as can be expected?? Two days of treatment down and now a day off! I hope you are feeling up to a day of celebrating and a grand ol’ time at the Twins game!! Thinking of you always and really looking forward to hearing how things are going for you!
With much love and lots ‘o prayers~
The Kelley’s
Jenni, Ryan, Emily, Lily & Parker
Hi Pete,
HAPPY 4TH OF JULY to you and your family!!
Pete, we have been thinking about you alot this week. Hope that your treatment is going as well as it possibly can.
We know that you are going to the Twins/Yankee game today — You will have so much fun there! Yankee staduim is awesome – you will love it. I hope that Twins can pull off a win for you today!
We are praying and thinking about you!! Enjoy the 4th!!
Love,
The Peltomas