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!!!
A journal of Peter’s journey
Peter~
We are so glad you got to go to the Twins game. How cool to watch it in Yankee statium. We are so sorry you have to go through so much pain. We are praying for the strentgh that you will need to keep going. Thinking of you guys all the time and hoping for better days. Glad to hear that you should have three whole weeks at home. Will you be playing in any baseball games? If you can, maybe we can come and see you. Keep fighting buddy!
Peter –
My husband and I were able to hang out with your good buddy Lou on Tuesday night. She was telling me how awesome of a guy you are and what a fun friend you are! I can’t wait to meet you after hearing her talk about spending time with you!
Keep up the great work!
Jennifer, Bill, Mary, Stu, and Eric
Peter, You were the best looking fan in the stands at Yankee stadium. You should have heard Uncle Trent yelling ” There’s Pete Man – Pete man – it’s Pete on TV” He was so excited!!!
I’m so happy that you got to have a day off the antibody treatment. It hurts to know that you are going through so much pain. I will pray hard that each treatment gets a little easier.
I love ya lots little Buddy.
Gramma Mary
Pete~
I am so happy to hear that you had a fun 4th of July! It might not have been the “traditional” way to spend it —- but, wow – it sure sounds like you had fun!! Plus, this will be a 4th of July that you will NEVER forget!
I am so sad to know that you are enduring so much pain as you take these antibody treatments…. it always hurts to know that someone you love so much is in so much pain. I am sure your mommy & daddy feel helpless as they watch you suffer… but, I hope they (and you!) keep reminding themselves that this is the right thing to do – we certainly don’t want that path thing to come back ever again!!!! Hang in there, sweet boy…. our prayers are huge tonight!
Can’t wait for your return to MN! I hope you and your sisters can come back to daycare for some more FUN!!!! Oh – Peter… remember last time you were here and we took pictures of you and all the daycare kids eating freezies outside?? I got them printed… they are adorable… and I will send them to Uncle Matt in case he wants to print them on your webpage!
Keep fighting, Pete
I love you!
Love-
Jenni & family 🙂
….just wanted you to know we are thinking of you every day.
Oh darn, I missed you on t.v. at the Yankees game….I hope you were smiling, Peter!! Sounds like the Twins have been going to town scoring 20 points in one game. Sorry to hear Peter has had so much pain during this treatment….hang in there, Peter..soon you’ll be back home playing t-ball and going out in Poopster’s boat! All the shots sound horrible and I got a chuckle out of Erika’s comment about being surprised child services wasn’t up to the hotel room….no doubt you were crying too, mom. Thoughts and prayers to all of your family.
Dear Erica and Peter,
I spoke with Jackie this morning, and she sounded happy to be able to spend time with the two of you. I am glad she can be there for you. I don’t know of a braver little boy than your Peter. He is definitely my hero right now, above Spiderman, Superman, and all the others! He is one tough kid!
Just wanted you to know that you are in my prayers every morning and night that you have the strength and patience to endure all that is happening. I know you have the love!!
Like I was told when I went through cancer, “you do what you have to do”.
Love to you all,
Bette
Thinking of you and your family as always. I am somewhat speechless as I try to figure out what to say as I imagine what it must be like to watch your child in so much pain. I get emotional thinking about it.
This has been quite a year for you guys and someday you will beable to look back and say, “Wow, if we made it through that we can make it through anything!” I hope once this is all said and done everything else will seem so easy. You deserve that!
Keeping you in our thoughts…..
Matt, Darcy, Charlie & Willie
praying like a warrior
We in Wadena think of and pray for all of you often. I know how I have felt when our kids have been sick or hurting but what you two are going through as parents- I can’t begin to imagine. Hang in there . I can tell by the other entries that there are many many people who are holding you in their thoughts and prayers.
Pete, you are one tough dude!!!. Keep fighting that path thing. You are a true Warrior. Have fun with your sisters and all your friends when you get back home.
Dave, Cindy, Sam and Andrew Lemke
Peter,
Sounds like you have been a pretty busy kid!! The Twins game must have been really fun, I missed your shot on TV, darn it! I hope all is going well with the treatments and am sorry to hear that there is pain involved. Unfortunately this is what it takes to be sure you’ve kicked that path thing once and for all!! Take care and have a safe trip back to Brainerd, enjoy your time at home!!!
Prayers are continuous!
Love from the Olson’s
Ty, Lisa, Paige, Drew & Hallsey
Ty & Erika
Our family has been on vacation, so we are just catching up on all the progress – WOW! I read one entry and get goose-bumps of thrill with good news, then read the next and want to cry with what you are all going through. I don’t know how you are doing it. All I can say is you must have angels holding you up at times.
I’m so sorry that Pete has had to go through so much pain. We can all continue to tell you it’s necessary for healing, and that’s correct, but as a parent it must be horrible to watch, and I can’t imagine any words that would make it any easier. I wish I could think of something to say that would help….for Peter as well as for you parents.
We continue to pray for all of you. God Bless,
The Swansons
Lori, Cary, Luke, Brooke, and Erica
I just wanted to leave another note… I have been praying for you everyday… I am good friend of the Cohens in Colorado, but I have family in Brainerd, which is where I am right now, but I am heading back to Denver in the morning. Your whole family has such amazing strength. We drove past the arena today and saw your “Keep fighting Pete” sign which brought tears to my eyes… It was up a year ago when I was here too. Everyone here is fighting for you buddy. I wish I could meet you someday. Maybe it will happen… You never know. Miracles happen to those who believe,,, That is one of my favorite sayings… If we can do anything for your family let us know… I know what it is like to go through pain, I deal with chronic pain, which I know is nothing compaired to what Pete goes through every day, thats what keeps me going everyday, I know my problems could be worse… Also thanks to Father Walsh for everything…
-Jess