Be forwarned: I am writing this more out of frustration than anything, but also wanted to let you all know what we know and what the NY plan looks like as of right now!
We got home Thursday afternoon from NY, and had a great weekend – beautiful weather, lots of boat time. Due to that, thought it was much more important to spend time with the kids so didn’t get much done. On Friday I spent much time on the phone with doctors, insurance, pharmacies, etc because we are to start giving Peter shots of GM-CSF today, in order for him to start treatment on Monday. We are leaving for Chicago tomorrow morning for a Neuroblastoma Conference which only happens once every other year and there are outstanding doctors speaking and lots of families – “angel parents”, families of children being treated now, and in the past. We’re excited about going. Not excited about leaving the girls for another 12 days. So we’ll be there tomorrow through Sunday and fly to NY from there. Because they are a clinic (Memorial Sloan Kettering Cancer Center) they do not work on holidays and his treatment is 5 days, so he’ll be treated M, T, Th, F and again Monday the 9th. I found out at 6:30 last night that the pharmacy we are working with didn’t ship the med out to us. Did I mention that Peter NEEDS to start this today to be able to start treatment on Monday? I think I did. So between laundry, unpacking, packing, being mom, working, I don’t have much time, or patience, for these little mishaps! I am now waiting to hear if the pharmacy will courier it up to us today since they tracked 1 dose of this stuff down in the cities(unlikely), or if one of us will be driving down and back to pick it up today. UGH!
Well, let’s assume this all gets squared away (preferably within minutes of now!)
First round of 3F8 antibodies next week.
Home for 3 weeks (and sometime while we are home we will find out if he’s reached HAMA)
If he reaches HAMA before they get 4 rounds of antibody, there may be more chemo in Peter’s future. They may need to do a round (still pretty high dose but they would try to avoid chemo with toxicities to hearing, heart, kidneys, etc) to knock his counts/system back down to try and continue with the antibody treatment until he gets 4 rounds. I guess it’s pretty crucial to get 4 rounds.
If he doesn’t reach HAMA, we’ll go out 1 week out of every 4 until he does reach HAMA.
The ideal situation would be for him to get 4-5 rounds in before he HAMA’s, but they think that is unlikely.
We will take it a round at a time.
A journal of Peter’s journey
Eigner’s–
Continued love and prayers from the Clausen’s.
Dave, Andi, Jesse and Bailey
Hey we are all behind you guys 100%. I am sorry the “planning process” for patients and their families always seems to be unnecessarily complicated and confusing…. Maybe someday, God willing, no-one will even have to endure the process.
Meanwhile, if you guys have some contact info. I have found some really excellent dinosaurs.
Erika~
For me to sit here and say “Everything will be just fine” …. “don’t worry – things will work out.”….. or “I know how you feel…” would simply be unfair because unless we are in your shoes, we DON’T know exactly how you feel….. but I do say from the very bottom of my heart, that I feel your frustration and that I pray that things DO go just fine and that things DO work out. It seems that your family has jumped so many hurdles and overcome so many obstacles…. it seems unfair that you are still hurdling…. but yet you always clear the hurdle and continue on until the next obstacle comes your way…. 🙂 The race is not over, but the finish line is closer. Keep chuggin’ away and always know that we are here to listen and we are here for anything else you may need! It’s hard to be a mommy when life is “normal”….. just last night my dad asked me when my day ends…. he was like, “do you ever stop???” and I was like, “Nope…. I work from 6am until atleast 10pm EVERYDAY… doing all that mommy stuff…. the cleaning, the cooking the laundry, the parenting, the dishes, the errands… kissing boo-boos, wiping tears, laughing, crying, smiling… .and sometimes just wanting to crawl into a cave & hibernate!” ….. being a mommy is a full time job —- and for you to be doing all the above listed things PLUS struggling with the emotions and hurdles of healing your cancer-striken child has got to be INCREDIBLY tough. Sooooo – my point in all this is that I think your feelings are more than warranted…. and I want to reming you once again, that if there is ANYTHING and I do mean ANYTHING I can do to help – please just say the word! Seriously, Erika – both my mom & I would love to help…. if you want some more cleaning or laundry done while you are away – please just holler. Seriously……
I hope you the meds get to you in time for Peter to continue his treatment as planned! Thinking of you always~
Jenn
Erika – I am sure that someone has already told you this – but try to take one day at a time. As you try to balance so many things it’s only natural you want order and everything to fall in place. Cancer and its treatment doesn’t always follow the path we want it to. I know this is overwhelming. Take a breath – say a quick prayer – and remember that God doesn’t give you more than you can handle!
Erika,
The stress and worry must be over powering for you and Ty. You are amazing…it’s no wonder that Peter is the courageous young guy that he is. Keep your fighting spirit going….it’s working. If we can be of any help at all…….please let us know.
Love to you all………
Uncle Ed and Aunt roz
Hi Eigners,
I just wanted to let you know how many people are thinking about Peter. This weekend I participated in the Time to Fly 10 K for Children’s Cancer Research and had a sign on my back in honor of Peter. A woman came up to me asking me how I knew Peter, and it was one of the Vernigs. Then as I was leaving, I saw a family with three little kids, all wearing shirts with Pete Man on the front. I am sure things seem daunting now and I want you to know you are all in my thoughts and prayers and the thoughts and prayers of many others.
Kelsey
Erika,
We think of you guys so often. As a mom of three littles too, I can not imagine all you have to do in a day. It was almost a year ago around the fourth our kids ran around and were playing at the restaurant. Wow, what a year it has been. We pray with the kids for Peter and your family all the time and can’t wait until the time we can watch the kids play together again. Take care and know tomorrow is a new beautiful day to spend with Peter and the girls .
Thinking of you!
The Johnson’s Ryan, Aimee, Justin, Jayda and Lindsey
Erika and Family~
My heart goes out to you! I can’t say I know how your feeling, but I do know what this cancer does to your faith once in a while. Just when you get good news, it seems as something has to get in the way. Ryan & I often talk about how hard our journey would be if we had more children. We see so many families during our chemo treatments, and we wonder how they do it. Logan takes all our time and engery, I can’t imagine how you do it with two other kids. I’m sure it is so hard to have to leave those two little girls, but know that they know it’s what you have to do to get their BIG brother better.
I wish there is something we could do to help you guys, but know we think of you always, and are praying for the strength to keep fighting. Peter~ you are such a fighter and you have captured the hearts of so many including us, I know we have met only once, but your spirit and love for life is wonderful.
Don’t ever feel bad for venting it helps you to keep going. Always thinking and praying for better days ahead.
Erika, Ty and Family,
We are sorry to hear of your frustration, but you are certainly entitled to IT! Please be assured that you are in our prayers each and every night that all things (even the smallest of details) will work out for Peter. We think of your family often and please let us know if we can be of any help. Tanner and Taylor would love some play pals even if for a few hours so you two can think straight. We thank you for your updates, keep them coming. Hey Peter, the Twins are playing the Yankees when you are out there! Cheer for the Twinkies:)
Love,
The Larsons
Hey Ericka! Just got on to see how things are going. WOW! Hang in there! We have to take one day at a time!
Please give Peter a big hug from Lexi and I! Even though he has no clue who we are please tell him this! Stay strong and keep fighting! Also tell him we will think of him as the fireworks fly this 4th of July!
I think of you guys often just don’t get on as much as I would like and when I am on don’t always take the time to write!
Take Care and Have a Fun and Safe 4th of July!
Dear Eigners,
I can’t imagine your frustration!!! It is so irksome when you have all your “ducks in a row,” and someone you’re counting on screws up! Let us know if there is anything we can ever do. We have four drivers in the family, you know. (Don’t panic, Ty. It is Jim, Jack, Patrick and me-not Tommy yet!!! The roads are still safe; he only has his permit!)
We pray for you every day. It sure seems as if everyone’s prayers are working as the test results have sounded pretty good. I wonder if we could pray that everything could go a little smoother!
You’re in our thoughts,
Freemans
We hope your flight went well and that you safely arrived in Chicago! Everytime we heard or saw an airplane in the skies above our house yesterday, Kate pointed high and said – “PETE!!”
Oh… and Peter, during lunch yesterday the kids were acting very squirrely….. Ellie (completely out of the blue…) shouted, “Hey, Peter has dog breath!” Of course then that got everyone going and pretty soon they were all referring to various people and what their breath smells like….. such silly girls! 🙂
Here’s hoping that your neuroblastoma conference saturates your minds with empowering thoughts, ideas and positive outlooks! Enjoy …. have a great flight to NYC… and have a GREAT 4th!
With much love and assurance that we never stop thinking about you~
Jen & family 🙂
Erika,
You have earned the right to be frustrated. I can’t begin to imagine where your thoughts take you on any given day let alone a day that gets out of whack due to problems. Please know that we’re all thinking of you and wish that there were some way we could be of more help.
You are all on the right track, even though some days might not seem like it! Enjoy your time in Chicago gathering all the information you can, and more importantly enjoy your time together!! Have a wonderful 4th and we look forward to seeing you soon.
Peter you take care and keep getting better!!! Have fun on the 4th and cover your ears, those fire works are going to be LOUD, but super cool!!
Safe travels Eigner’s, we will be thinking of you!
Love,
Lisa & The Olson family
Hi Pete. We were the three little ones that Kelsey saw at the race. Mom made us cool t-shirts with your picture on the front and name on the back (check out the pix we sent your Mom). We participated in the kids fun run and ran super fast!! It was extra special to run on behalf of you and all the other kids out there w/ cancer. We received finishers medals and books and lots of treats afterward. Good times. Next time we see you we’ll give you a medal – you’re the superstar, after all.
Hope your travels are treating you well this week. We continue to pray for you daily.
Your friends,
Marley, Ty & Kaia
Hey Gang – Hang in there…we are totally keeping your family in our hearts and prayers! Let us know if there is ANYTHING we can do for you back home to help out while you are gone, ok? We’re here for you! XOXO Val, Jason and Selby p.s. Erika – if you ever run into that stuff again w/ the pharmacies – give me call b/c I visit tons of them all day everyday! 🙂
Lutheran church of the good shepherd continues prayers for Peter and family. We look forward to good news in the near future.