Monday was a relatively good day. Peter started the 3F8’s while Ty and girls flew back to Minnesota after the fun weekend. The first day of 3F8 antibody treatment went well, considering that this can be a painful treatment. Peter developed some hives, which is not abnormal, but he was mainly comfortable.
Yesterday the treatment continued and the hives increased. They’re probably in his throat, because he had some trouble swallowing. Then later in the day, Dr. Kushner spoke with Erika a shared a couple developments. First, the CT scans of Peter’s abdomen/torso look clear! I don’t want that great news lost in the story, so I repeat, the abdominal scans look good. However, he also reported that Peter’s HAMA count looked “a little high” and they may not continue antibody treatment on Wednesday. This was confusing to say the least.
So it’s Wednesday and the treatment has been canceled. The bone marrow biopsy and the renal scans (kidney) have been moved up so they didn’t have to spend the remainder of the week in NYC doing nothing. And as I write that, I realize there was a bit of news I didn’t capture in earlier posts; He is getting a kidney scan as a precaution.
Ok, so what the heck is going on here with the HAMA stuff. Apparently, his labs from Tuesday after treatment showed Peter as HAMA positive, even though his labs just before he started on Monday were HAMA negative. That seems strange. But apparently giving the 3F8’s to a HAMA positive patient can cause an anaphilaxis response — breathing issues, to be simplistic. With the hives getting worse and a positive HAMA test, they don’t want to chance it. I would say Peter’s had enough breathing issues already.
I’ll get more information on what this means for the future of 3F8’s, but there is a future. Erika changed flights for the third time in this trip and they will be returning tomorrow. We’re just hoping for good results from the remaining tests this week.
Thanks Uncle Matt,
We’d all be lost without your kindness and updates.
Our love to you all.
Uncle Ed and Aunt roz
So glad to hear the update on Peter. Peter is in our prayers and we will continue to pray for complete healing. God is good.
May he give your family peace, strength and comfort. Especially for Peter!
God bless. Peggy
Praying for more good results! You guys are so amazing. Your ever changing agenda, and you just go with the flow! I see you visited our friends Kate’s web-site. We are so glad that it’s another family to support you, and one that knows what your going through. We are really hoping to see you guys real soon! We are planning to make it down for the benefit also. Keep the faith. Always thinking of you guys!
All our love and prayers~ Ryan, Megan, and Logan
We think of you often. You are always in our prayers.
Dan, Ann and Tate Richter
Yes, Uncle Matt – we WOULD be lost without your continued, intelligent postings! Thanks for keeping us all informed — it’s a pleasure to travel along on Peter’s journey! 🙂
So – you’ve reached HAMA too soon, ‘eh buddy? Although I don’t understand it all and have no clue what the reasoning is behind it all —I figure it must all be part of God’s ultimate plan for you!?!? Just keep chugging along on your journey…. God won’t take you somplace that you’re not destined to be!
I guess the good news (aside from more CLEAR scans!! Three cheers for that…..) is that you get to come home! Not sure what the weather is like in NYC, but here in MN — it’s COLD! Emily wore a winter coat, hats & mittens to school today! You’ll have to come home and ride your bike like crazy to keep warm!! I bet Kate & Ellie will be gleaming with smiles when they have their big brother home again! And….. do you still get to start school soon???? Won’t that be F-U-N!! 🙂
Take care buddy! I look forward to seeing you soon!
With much love~
Jen, Ryan, Emily, Lily & Parker
Hi Eigners
Still checking up on you all everyday. Loved the picture(finally got to see who Matt is) It must be very difficult when it seems like you have a few steps forward and then one back. It is the steps forward that count and Peter seems to be making alot of those!! Keep the Faith, as the step backwards make you all stronger and pull together even more. Peter has opened up a world to us that we would never have known before, and made our Faith stronger in the process!! Quite an accomplishment for a 5 year old!! Thinking of you all and praying everyday for Peter’s recovery!!
Love, Steve, Glenda, Josh, Megan, Jacob
Peter – we’re so happy to hear your abdomen scans came back clear – what great news! We check your site daily, and continue to pray for more time at home and more good news throughout your testing!
Keep up the fight Peter – you ARE a winner!
The Swansons
Lori, Cary, Luke, Brooke and Erica
This is way too confusing for me to understand but the part about the good news is the best! The hives don’t sound like much fun…hope you aren’t too miserable and will feel better soon. You continue to amaze everyone, Peter, and we are so proud of you! Glad you’ll be on your way home again soon! Get your costume ready….Halloween will soon be here!
Peter, hang hang hang in there little guy!!!!!!!!Whew!!
Dear Peter and family,
You are getting very good at this “Do what you have to Do!” stuff.
I hope you are out today, Saturday, Oct. 13, just enjoying this beautiful sunny autumn day. Have fun with your sisters and friends. Maybe find a leaf pile to jump into and just be a kid for a while!
We can’t make it to your Legends Club dinner, and I feel bad about that. I really want to meet you, but Terry is involved in an Old Timers Hockey Tournament that weekend in Danbury, CT, and he will be playing hockey on Friday, Saturday, and Sunday. He is 66 and still plays hockey so you can see the love for hockey never really goes away! We know you understand cause you love hockey too!
My wish for you, Peter, is that you will be able to play hockey soon! We pray for you and think of you every day.
With love from Terry and Bette Noble
Praying like a warrior.
Hi Peter,
Still praying and believing!!! Your an awesome boy keep up the good work and enjoy being home.
Bless you,
The Bushey’s
I haven’t been able to check up on things with you Peter until this morning. I’m thrilled about the latest scans and delighted that you and your family had a fun day in New York’s countryside. Keep taking one step at a time, getting stronger and stronger.
Peter and family, my family continues to pray and think of all of you.
I try to keep up to date and read the latest postings. Uncle Matt is awesome for keep up updated. Continue the fight and know prayers are going out everywhere for you!
Paige Kratzke and family
Dear Peter and family, just wanted you to know my family continues to pray for all of you. I try to keep updated and my mind is on you as you continue to fight. The pictures are great. Uncle Matt is a great guy for keeping the updates coming. We will continue to pray and our thoughts are with you.
Paige Kratzke and family