As I wrapped up the last post, the 3F8’s were canceled and the Eigner’s were waiting on test results. The kidney scan results came back and, after reflection, the results are somewhat confounding. He is getting a third of function or blood flow to one kidney and two-thirds flow/function to the other. That doesn’t sound good, but the doctor said it was okay. But is that “okay” for an NB patient, since many patients lose kidneys? Or will the kidneys heal themselves if they aren’t subjected to major chemo? More questions are being raised.
Everything seems unsettled. Peter is plugging along and doing great; His day-to-day comfort and improvement should be the center of focus and is reason to be very thankful. Yet it is a scary time and the future is vague, to say the least. The statistics are consistently drilled home from medical staff; Most patients relapse in the first one or two years and there is no known cure for recurrent neuroblastoma. Even though his current scans are clear (bone marrow results aren’t back yet), a few cells here an there won’t show up on scans. And those cells would constitute disease and multiply.
So treatment has to carry on in order to stifle any awakening cancer. What the treatment consists of isn’t known and seems complicated. Peter had another go with the 3F8’s, but that didn’t last. They will try to get him back on the antibodies at some point. He is back on a cycle of the accutane pills (the acne medicine mentioned before), which is great. Apparently the consensus is that they would be continuing with more chemotherapy of some sort if it wasn’t for ARDS and Peter’s weak state in recovery. Yes, this does conflict with an earlier post. Chemo is no good, but it’s a necessary evil and it’s frustrating to think that maybe he’s not getting what he needs because of ARDS. There will be more treatment and it will become clear in time, but it is difficult to remain focused on the positive with an unsettled future.
BENEFIT
Speaking of the future, the benefit on 10/27 is QUICKLY approaching. I would say there’s a 90% chance that Peter and family will be in attendance (nothing is 100% in this battle). It’s shaping up to be a blast with live music and good people. Please, please get your registration in to Troy today. We need the registrations by this Saturday, the 20th.
Here is the registration form again.
Hi Eigners!
Riding the ups and downs with you and dear Peter, and praying always.
Perhaps you have heard more by now on the lopsided kidney function, but it is very common when local radiation hits one of the kidneys. Erik’s kidney function from the renal scan also showed a 70-30 split, meaning that one kidney is doing twice the work of the radiated kidney.
Now this was a surprise to me because we were told after his radiation (in 1992) that his right (radiated) kidney would not work at all, and the left kidney would do all the work. So I was happy to know his right kidney was functioning a little bit. He received 2400 cGy in 16 fractions.
Hopefully dear Peter will be regaining strength and completely healed from the ARDS soon so that he will be in top form for whatever the good doctors have in mind next to keep the NB away.
We love you guys and think about you constantly. Who could ever resist those big blue eyes? Peter is so adorable!
Love and prayers from the Ludwinskis
Peter-
Tate really likes your pumpkin. We will probly buy one this weekend. Glad to hear you are felling a little better.
The Richters
Hello Peter! Have not written for a while, but still checking on a daily basis to make sure all is going well, or at least as well as it can! You are such a stong boy! We were hoping to be able to come to your benefit on October 27; however, we have a Wedding that night and can’t make it! I hope you are able to make it and enjoy some time with your family and friends! They seem like a great group of people! Keep fighting!
We are all so blessed to Know The Eigners.. Please stay Positive-
Peter is doing great – I enjoyed our Talk tonight- You are a very specialy
Family…… Very special
Love
The Cohen Family
Hey Eigners’
Peter looks great — is the pumpkin a personal design?
An artist besides a fighter! Now that’s a combination that can’t be beaten!
Virnigs, Hooks and half the country are pulling for you guys. Take heart.
Love
Eigner’s
We are thinking of you also and hoping that the news continues to be good. Peter you look great and I LOVE the pumpkin!! I hope you are ready for Halloween, it is sneaking up on us!
Have you had a chance to watch the Wild play yet this year. They are really playing well!!
You guys take care and enjoy your time at home!
You are in our thoughts always!!
Love
The Olson’s
Ty,Lisa,Paige,Drew &Hallsey
Here’s hoping your first day of kindergarten is going GREAT!! I will see you this afternoon when daddy brings you and Ellie over after school… and then I want to hear all about it! 🙂
Love,
Jenni
Hi Peter! I love the picture with the pumpkin, we are going to be carving our pumpkins soon. My kids Lake and Vallie love Halloween. You look wonderful, you are such a strong and brave little guy. I hope you continue to improve and feel better each and everyday. Mom and Dad, hang in there, it’s Peter’s strength that keeps you guys going. I know we have never met, but your family seems like the perfect family. Peter’s in my prayers every night!
Hey Peter,
Wow, what a pumkin you made!!! Well I’m running for you on Sunday and before I leave the house to go 13.1 miles I am going to look at that picture of you and your pumpkin, cause it will keep me running.
I’ll let you know how it goes when I get all done. I think Macy and Brooks are coming to see you, LUCKY DUCKS!!! Have fun with them, and tell Macy to show you her new dance moves, she’s really good.
Hang in there buddy, you rest, I’ll run…JUST FOR YOU!!!
Blessings to all of you.
Therese
After reading the “trying times” update, one can’t help but feel a sense of depression. I found myself feeling bad and thinking “why can’t this just go smoothly for them?” Then, Peter walked in my door after his first day of Kindergarten today. Here I am looking at this adorable litttle boy all decked out in his new khaki pants and thinking “how on earth can I feel sorry for him?’ He is so vibrant…. he is so smart…. he is so loving towards his sisters. What a difference a few weeks makes. Today, he ate every morsel of his lunch….. a few weeks ago, he barely ate three bites! Today, he was joking and laughing… a few weeks ago, I couldn’t get the kid to crack a smile. He may still have a long road ahead of him…. but I saw today that he is on the right path and he is living in the moment. He will take what ever is thrown at him and he will sail the seas …. both the gentle waves and the rough rapids. This kid is amazing…. he is beautiful…. he is smart… and he WILL win this fight!
Glad you’re here with me right now, Peter! You make my days so happy!
With much love~
Jenni and family
P.S. To Ellie’s cousins : Ellie was in one of her goofy moods yesterday – we started talking about Halloween and she rattled off all her cousins names & what they were going to be for Halloween – I believed her for a while, until she stated that “Baby Brooks was going to be a button”…. “Macy is going to be a cracker”….. “Quinn is going to be a jacket-head and Cole is going to be a piece of paper.” Peter is the artist and the athlete in the family…. looks like Ellie is going to be the comedian!!? 🙂
Peter, I smiled when I saw you with your jack o’lantern pumpkin, particularly enjoying the eyebrows…on the pumpkin! Thank you!
Sounds like you got to go to Kindergarten… How cool is that. Hope it was a fun filled day. Keep that beautiful smile and keep eating drinking and getting strong. Love hearing good news.
As always you are in our thoughts.
Hi Peter. Marley and Ty both commented on your pumpkin… they are very impressed with your artistic skills. Nice work.
Sounds like you attended Kindergarten today. That is big news! What a lucky teacher and classmates you have. I imagine you’ll be learning a lot. Ty likes Kindergarten very much, but thinks writing “3”s is a bit tricky. What do you think?
Carry on, Peter. You are a warrior. We are always praying and thinking of you.
With love,
The Ballinger Family
Dear Peter,
We have not met but your Grandmother told me about what a fine young man you are. It is good to see how you are striving to do so well.
There are lots of lumberjacks in Missouri because we have lots of forests here. When we have a safety meeting at the sawmill we take time to pray for you and your doctors. All our lumberjacks pray for you to keep getting better.
God bless you — keep up your wonderful spirit!
Ken Schroeder