Day 111 - HELP
This week we had the first of several in-person consultations to discuss surgery. Every time I even think about a moment of him laying on that operating table makes me ill. Patiently, our oncologist and surgeon walked us through every single detail of the surgery and answered all of our questions. I made it almost through the whole conversation until the very end, when I finally was able to ask where they would cut. When he drew the line across the majority of his abdomen, I died a little inside. I just... I feel so helpless.
When we were (finally) done with the meeting I asked 'Does everyone ask this many questions?,' to which our doctor smiled and said, 'You ask the most, but that's ok!'
We have reached out to the other top two hospitals in that specialize in neuroblastoma surgery, and are traveling there next week to do in-person consultations. Our team here is amazing, and they have taken care of Redden as their own, but this is major surgery, and we feel it's only fair to Redden to make sure we find the right person for his unique case. That could be here with the same amazing surgeon he's had twice already here, but we won't know until we have the conversations and make sure this surgery is not only necessary, it's also the best decision, at the right time.
Ultimately, Redden has to live with our decision. So we have to make sure it's the right one.
This surgery has caught us by surprise, and even now, more than a week after learning the results, we are still in shock. This wasn't what we hoped. But here we are... consulting with people with sharp objects. Discussing ways to cure our baby.
And we need your help.
We can't live knowing we didn't give him every chance. And if that means our pride is lost (and honestly, ours disappeared about 5 minutes after we heard the word cancer), and we need help every step of the way, so be it. I would pull my own arm off and eat it if it would save him. He's so very worth it.
FLIGHTS - We are pretty sure we can get mine and Redden's flights covered through a charity organization. We are coordinating details now. The piece that hasn't been filled yet is getting Brian up there. Also, we feel really strongly that if possible, this is something we should do as a family, as we are already forced to do too much apart. So, we're trying to get the boys to be able to make the trip with us.
So, if you have any Delta skymiles to spare, would you send them our way (My skymiles account is #9166982448)?
*** UPDATE: ALL OUR FLIGHTS WERE COVERED WITHIN AN HOUR OF POSTING!!!! Amazing!!!!
DONATIONS - This is humbling to ask. We've received so much from so many people, and we are extremely grateful. But the course of his treatment has changed, and now that surgery, consults, and travel are on the table, Brian is going to need to take some time off so we can be present to make these decisions, and follow through with the treatment and recovery. Additionally there are details of this trip, train rides, transportation, lodging, etc. that aren't factored into our life right now. There's a link at the top of the page if you feel inclined to help us with these things. Thank you to the many, many, many, many that have helped us already. You've made all the difference.
*** UPDATE: THANK YOU THANK YOU THANK YOU! SO MANY DONATIONS - YOU ALL ARE AMAZING!!!!
SUPPLIES - Someone suggested creating a list of supplies that we use constantly for Redden in case any wanted to contribute in that way. I'm a big fan of easy, so Amazon list felt like the obvious choice. You'll notice the majority of the list is various forms of sanitizer... and we USE THEM CONSTANTLY. You can find the list by clicking HERE.
*** UPDATE: ALL SUPPLIES HAVE BEEN SENT TO US! THANK YOU!!! WE ARE SO GRATEFUL!!!
PRAYERS/LOVE - There is nothing like the love we feel. We feel it when we receive food from strangers that heard about Redden. When we get an envelope full of carefully cut coupons for our family. When someone recognizes him somewhere and tells us they pray for him every day. When emails/cards/texts/notes and love keep pouring in every day. In hugs, in smiles, in shared tears. You give us strength when he have none.
THANK YOU.
Comments (14)
Can I share this on my Facebook page so people could help out? Let me know and I'm sending you and the boys so much love and prayers!!!! Miracles ARE possible!! xoxo Robyn
I would give up my life for his. Love Grandma. xoxoxoxo
Dear Beri, I am a friend of Peter & Kelly McKinley and have been following along since your first post. I have a friend who is very involved in Patient Airlift Services - check them out for your flights. http://www.palservices.org/ In the meantime, I will transfer my Delta miles to you. All love, Irvings, ALL LOVE, Maggie
Beri, I would love to help any way I can. I don't know what hospital you're visiting in NY, but I've put out some inquiries to try and find lodging for your family in NYC. You and your family are more than welcome to stay with us during your NY trip. We live a bit out of the way upstate, but we have plenty of space and you can get to NYC by train from our town or drive. Depending on the length of your stay, it may make more sense for you to be in the city, hopefully I can help. While you're here, if you need help with the boys, even someone to sit with them in the waiting room so you can speak with the doctors, I would be happy to babysit. If you need any help with logistics, I'd be happy to help as well: [email protected]
Hey Beri! Totally want to follow up to Livea's post, but I too live in the NYC area, so I KNOW I could hustle you up an apt while you're here, PLEASE reach out, thanks lady!! We got this! xox Robyn Moreno [email protected]
Rob has offered a place to stay
Thanks for the update. Remember, whatever decision you make, that will be the Right one. Prayers coming your way. Love, Peace, Strength, Courage and Patience.
Irving family, my name is Kelly Brady. I'm part of the extended Brady family of Glen Cove. Dianne got in touch with me to tell me about your son and what you are going through because I'm a nurse at CHOP. It sounds like you are going for 2nd opinions on Redden's neuroblastoma surgery. I'm not an Onco nurse, I actually help deliver babies with congenital anomalies. But I've been at CHOP for 8 years and a few things came to mind that might be helpful for you... There are 2 Ronald McDonald houses very near CHOP that accommodate our families for a nominal fee. CHOP also participates in hosts for hospitals, a program that places families in nearby homes when they are undergoing treatment. CHOP has a very well developed Child Life program to help your older boys understand and cope with Redden's condition and treatment. If you decide to go the CHOP route, please get in touch with me. I live about 30 min from CHOP and I have a 3.5 year old and 6 month old, just 6 weeks older than your little man. It's so difficult to think about the path your family is walking right now. I'm deeply sorry. If there's anything I can do or questions you might have about CHOP, I'd be glad to help. [email protected] 6104053218
If you do indeed come to Philadelphia, please let me know. I am a friend of Jessie Weaver's. My husband and I have a great church family and I know several nurses personally who are at CHOP. It may be helpful to have someone you know praying for you nearby and perhaps a visit from some nurses who I can personally say are amazing and patient and kind and would love to pray for you and Redden and help in any practical way we can. Whether or not you end up in Philadelphia, we will be praying...My email is [email protected].
Beri, we are so deeply sorry to hear of the decisions you have to make for Redden very soon but know you will exhaust every avenue to make the best decision possible. We are always thinking of him and praying. Rest assured that your support system is stronger than ever and is wishing you endless love, strength and courage in the coming weeks.
Irving family, I was forwarded your post from a friend because I have a 10 year old daughter who has been fighting NB for over 6 years primarily at chop. I don't know which surgeon you are meeting with there but likely it is Dr Pete Matte. Dr Matte is my daughter's surgeon and is fantastic. Not only is he a top notch surgeon but a great man as well and will treat your child as if he is his own. He will be honest with you with what he thinks he will be able to do during surgery and how much of the tumor he feels he will safely be able to remove. I also know many families that have gone to Sloan and I'm assuming here that you are going to talk to Dr Laqualia. I don't know anyone that has been disappointed with him and he has a reputation for taking on the toughest surgeries that no other surgeon feels comfortable with. I think either way your child will be in great hands. Just wanted to give you some encouragement as you set of to meet with both surgeons. I know it's so hard having to make all these decisions. Feel free to contact me at [email protected] Amy
Thinking of you on your family's journey. "Lord, be with me for the sea is so great and my boat is so small."