November 7, 2016 ~ 2nd Opinions
So I needed to type the previous post to provide an update on Cole's current status and where he's at. I also needed to compartmentalize to get me through this post..
Last week while in the hospital we met with our doc who informed us she heard back from two of the second opinions we requested - Boston and St. Jude. Both places concur with the diagnoses, don't believe it's curable, and don't feel they have anything to offer Cole outside of what he's already getting.
Yep....FUCK. Not what we needed to hear.
Still waiting to hear back from MD Anderson but she's not optimistic. But we can still hope.
She also heard back from FoundationOne where part of his tumor was sent after his July surgery. FoundationOne is an informative genomic profile that help physicians make treatment decisions for patients with cancer. Their assays identify the molecular growth drivers of a patient's cancer and help oncologists match them with relevant targeted therapies and immunotherapies. It usually takes around 12 weeks to get this information back because they assess the genes of his tumor. They were able to identify 1-2 mutations of his tumor that has been known to be sensitive to a chemo pill called Crizotinib so while they ALSO don't believe he's curable, they recommend this pill since they at least know he has a couple of markers known to be sensitive to this drug.
Crizotinib is less toxic to the body and most on it don't feel bad much at all. Our doc says she's had patients on it that you can't even tell they have cancer because they are able to lead more normal lives. She also said that people tend to think the pill doesn't work as well because it's a pill, but it's one of those "less is more" things where it can be very powerful, but you just don't see side effects like regular chemo because it's less toxic as it targets specific markers. While we know Cole's current aggressive plan is working on his lungs, we don't know if it's working elsewhere at all. Therefore, her recommendation is switching to the pill and increasing Cole's quality of life, and, because we at least know his disease has the couple of markers sensitive to this different drug.
We won't know any differences until his next scans which will be the first of the year because she refuses to do scans before Christmas. She doesn't feel it's necessary and said while we may or may not see it, we need to make sure he has a very special Thanksgiving and Christmas. Plus, this will give us a better timeframe of the treatment to see how it's impacting his disease. Obviously, with the brain and spine issues, the lung really isn't as important anymore therefore he won't have surgery. This bastard is all over his brain and almost his entire spine. I barely typed that sentence right there...
I have to shut my mind down to type this but it's important to provide an update to our supporters to see where things are at. It's a tough choice to decide to switch to the pill or remain with our current treatment. Our doctor said there is no path of zero regret, so we have to try to pick the path of least regret. She said if we asked her to make the decision for us, she's prepared for that, and would choose the pill. Therefore, right now, we agree that's probably best while we continue searching for other curable options and wait for the scans in January. No, we don't know where all to search but we feel we have to keep trying. Her concern is that we already know how aggressive his disease has been and is, so of course she's concerned for his next scans.
I asked her if she's ever had a child that she said wasn't "curable" that ended up being cured..and she said no. She said she's very conservative and does NOT use that word unless she truly believes it.
FUCKING FUCK. Yeah...that's where I'm at.
Since we don't know what the scans will show, either way, we must make every moment count. She said it's up to us how we move forward, but she suggested making the holidays special, taking those moments or vacations as we're able, and just don't postpone things like people normally would like "oh, we'll do that next time or next year, etc." Because we have no idea right now how much time we have. She said she has families that treat every weekend or holiday like it's their last, and one family it's been two years. Because you truly don't know. She said maybe make a "wish list" of sorts with the top 3 things we/Cole would like to do, and once you do them, make another 3, etc.
How do we do this? How do we make a "bucket list" for a 7-year old?? How do we accept that this could be our last Thanksgiving and Christmas? HOW?? I got through most of this post blocking things out and just typing. But as tears fill my eyes right now I have to confess that it's a fucking struggle right now. The anger, hurt, sadness, and just...everything I/we feel. How do we keep our faith and trust that the Lord will take care of things? That's mostly what people say all the time...."Our Lord is a healing God, he'll heal Cole, keep the faith and pray. It will work out." Well, we do. And we aren't giving up. BUT, I challenge anyone in this situation, which NOBODY can relate unless you've experienced it, to not question things and feel angry. Sometimes I think that's just what people say because they don't know what else to say. I know, I know...it's all true and such..but at the same time, people lose loved ones..children...all the time. That's how life works. And nobody can say they wouldn't feel this way.
Everyone says stay positive, and we ARE, but we are human. And sometimes it's exhausting to just keep hearing these things and forcing ourselves to remain positive when we keep getting knocked down. You all are human too and would feel the same. I know it. How do I stop my mind from going to that bad place?? How do I not think about the fact that I may have to plan services for the only baby I have...That he may or may not see a next birthday...that I may not see him graduate high school and/or college....that I may not see him get married....that I may not ever be a grandma. How do I not think of these things?? And how do I accept them?? I'm human. I am a fucking badass and have remained strong through all of this...but these past few weeks have tried my strength to the fullest extent and it's taking everything in my being to push through this shit. I'm a fighter. I don't give up and will NOT give up. But come the fuck on...we gotta catch a break. I COMPLETELY see how parents crumble in this situation. I do. I/we will NOT crumble, but I can see it. I know the reality...but I choose not to believe it right now. There HAS to be a cure for our angel...there has to be. There just does.
That's about all I can say for now. I know..there are no words. There just aren't. We are forever grateful for the amazing support and prayers that continue. We will continue fighting with everything we've got.
#TeamCole🎗
Comments (28)
You are right, no words are adequate and we can not begin to know the depths of your pain. Look far and wide as you have; enjoy that precious boy. To say this is so unfair is an understatement. Much love💛
I'm so sorry to hear this . I teared up reading this. I can't imagine what your going through. Try to enjoy the holidays. Don't lose your faith.
I love you. And I am here for you.
I am so sorry, Shanda. Continuing to pray for strength, comfort, wisdom, and peace for you and the family. Regardless of the outcome, you are a strong, fierce, and amazing woman and mother.
I'm so sorry and wish there was something that could be done or said, but know there are no words. You are amazing and I admire your strength.
Shanda - Every bit of your anger and heartbreak is justified. What you're facing is unfathomable, and you've done so with grace, a positive attitude and remarkable bravery. It's beyond fair to embrace being full of rage as well, and to experience that authentically - after all, you're human and none of this is fair. I'm wishing Cole physical comfort, peace and healing, and I'm sending love and a hope for miracles your way, as well as to Steve and your families.
Shanda, I cannot even imagine how you are feeling. I just can't even imagine. And yes, I would feel the exact same way. Much love to you.
Afternoon Shanda, As a mother my heart is breaking for you, & as a sister of yours in Christ, I am pleading to the Father, His Son, & Holy Spirit who resides in us all, to help ease your family's physical, emotional, & spiritual pain. I would like to help you financially provide a holiday to look forward to in the midst of this pain. How do we do that for you all? Please let Laura Dorsey, our mutual friend know. Peace to you sweet, beautiful, loving Shanda, Shelly
Want one of mine? I have extra kids to spare!! Kidding, of course (well, some days I am NOT kidding), but I hurt so bad for you. All I can offer is humor and prayers. Loads of prayers.
Shanda & Steve--my heart breaks for you. I wish I had the words to bring comfort but I don't. All of you have been through more than anyone should have to go through and I'm so sorry. I've been praying for a miracle and will continue to do so. If you ever need to cry or scream or yell profanities, I'm only a call/text away.
Shanda, I don't know what to even think or say. I'm at a total loss for words. My heart aches for you and Steve. Have you talked to the doctor(s) about the cannibas alternative?? More research has been done on CBD, with proven results. Unconventional, maybe..... It's worth a shot. We love you all!! What ever I can do, please let me know. Penny
God bless, Shanda. Keep fighting!
I think about you all constantly and will continue to be your warrior and partner in prayer. Sending love!
Shanda, As a feeling human being who deeply loves her child, it is more than appropriate for you to express your anger and grief. Doing so is not a sign of giving up or lack of strength. You are a strong woman who has kept Cole strong. God provides healing in many ways. Not only does he heal disease through treatment, but he also provides “the ultimate healing, the union of our spirits with the spirit of God” (“Expect A Miracle,” The Gratitude Path by Kent Millard). This is difficult to think about when it is a child. God is with you now and always. May He bless you as He already has. Take your strength from Him and know that there is no way anyone can understand why this is happening. Continued prayers of a miracle, of healing, of strength, peace, and courage.
Love you guys! Praying for you daily! ❤️❤️
Shanda, There are not words, there are not feelings deep enough to express how I and so many others feel toward and for you. All we can do is hold you up in thoughts and prayers. You are not alone in this process. Love and care deeply, Shanda.
Shanda- I have no words. I share your anger, your grief, and your love. I will continue to send prayers, healing thoughts, and love to you, Steve & Cole. You are a badass warrior, but this is an unfair fight. I will continue to hope for a miracle!
Shanda & Steve, So much is going through my mind. Cole's disease, his pain, his perseverance, your Christian beliefs, our faith. Remember that God is in control (sometimes it is hard to believe). Satan loves to create havoc in our lives, anything to shake our faith. Jesus IS the great physician. NEVER give up hope that Cole will be the miracle that will inspire other children and families. Praying for the medical staff as well as you and Cole. God bless!
I want to start off saying that you are a badass and you are a great mother of a fighting little badass. It breaks my heart to think of all the what ifs your family has to endure but know that you are an absolutely amazing mama and Cole is so blessed to have such an amazing family. Treasure your times together because no one knows what the future holds for any of us. No one would ever wish this nightmare on their worst enemy , but know there are tons of people praying for a miracle( they do happen) and know that we all are human and everything you're feeling is perfectly normal. I'd be mad as hell too. Keep the faith...we're in your corner 100%. I pray for pain free good times for your family. My heart and prayers are with you all .
Continued daily prayers for Cole; your family and Coles medical team of doctors and nurses. I truly see through your updates especially you are a very strong faithhful lady but you are human also and if you weren't then there would be something seriously wrong. You need to and have every right to human and be fucking mad and angry. I personally go through being a human too as I was told a year ago to get my affairs in order as I would have maybe a year to a year and a half. Through this I have been blessed with my first grandchild and I have 2 beautiful grown adult children that are scared to death and yes human and are fucking mad and yes like you and yours we have a very strong relationship with Our Wonderful Heavenly Father and Jesus. We pray for miracles and that has helped some for us to cope. I will be continuing my daily prayers for Cole but will now be praying for miracles. .....God does and Will perform miracles.
I will continue to pray for miracles. I know they can happen. Glad you shared you heartbreak and frustration. Hugs tight and strong.
I am so sorry your family is having to go through this. I will continue prayers for your family & the Dr's to find the answers to save Cole! I think about your family all the time!! I am sending you a big hug.
More prayers going up. I'm sorry.
Amen. Keep fighting Shanda. Love Cole, you, and the fam. #TeamCole
Oh Shanda. My heart is breaking for you. I am so sorry you guys are going through this. You are an amazing mom and person who is admired and loved by so many people. You are always in our thoughts and prayers. Hugs and Love.
As I read your posting, hearing how the doctor shares the news, I am thankful you have her as a doctor. She seems supportive. As you share, people really don't know how they would react. I do know I care! From your post on Facebook it apppears you are making the most of everyday. Good for you! Will continue to pray. Mary Lois
Shanda, that was tough to read and I cannot imagine typing it. You are so strong and we admire you for that. Your feelings are natural and normal - - it's your baby! You are a terrific mother and we all know you and Steve are doing everything you can for Cole. You're right; don't question it. Some of us just aren't so lucky and experience this horrible disease. Absolutely live each day to the fullest. I remember telling myself almost five years ago that none of us are guaranteed tomorrow, with or without cancer. The disease sucks. Each day is a gift. Enjoy little Cole! Don't be afraid to ask for help, make a late phone call or cry on someone's shoulder. You have so many people pulling for all of you and we are happy to help in any way. Hugs, strength and love to all of you!
I believe everything in your post expresses just how human you are, we all are. My heart aches for your family. Praying that God surrounds your family with loving arms each and every day so that peace can find you!