December 7, 2016
I know it's been a few weeks so figured I'd post an update with where we're at.
Cole's "event" was on Nov. 9th. We brought him home Wednesday, Nov. 16 and have been here since. He's been on the new chemo pill for 3 weeks now. After that first weekend Cole woke up and spoke, he wasn't able to speak anymore after that. At home he's done a good job trying to communicate, although very frustrating for him and it's been extremely difficult for him. Sometimes we can see he's visibly frustrated/upset, and probably scared, with tears in his eyes. He's been able to do a pretty good job with thumbs up/down with things and was making noises and reacting to things. Sometimes trying to smile as best as physically possible. Everything damn thing is a struggle for him. But he's so damn strong.
Toughtest part has been not knowing what he needs because he can't communicate, making sure he's comfortable, and not knowing what's been going on inside his mind and what he's thinking, if he's scared, etc.
This is fucking awful. AWFUL.
Our same home health nurse comes to check on him twice per week, does his labs, and brings us supplies/medications as needed from Hospice. She's very nice and helpful.
So things changed this past weekend, unfortunately. Cole's breathing has changed..slower breaths, frequent long pauses to where sometimes we have to nudge him, and more of the gurgling like before in his throat/chest. He can't really cough to help so it just sits there. I suction his mouth as best I can and he's on medication to decrease secretions which helps some. His heart rate has been very low, and not just when he sleeps now. His oxygen has decreased as well so we have him on oxygen around the clock. We've had to adjust his feeds to just fluid because he gets so distended and still is just not as bad. He opens his eyes and looks at us and tries to watch TV we think, but can no longer use hand gestures and such to communicate with him. He barely moves his arms. So we just have to guess what he needs and stay super sensitive to keeping him as comfortable as we can guess he needs.
I can't even begin to imagine what he's thinking and what's going on in his brain/mind. How scared he must feel. When those sweet blue eyes look right at me and stare me in the eyes.....I just... Honestly, I can barely try to think about it because it crushes my heart. To pieces.
Watching the most precious thing in our lives slip away is something I can't describe. The pain. The hurt. The frustration. The hopelessness. The sadness. The anger. I feel ALL of it. I am so fucking angry and heartbroken that it's unbearable. Watching the center of my universe slip away is the most God awful feeling ever. People keep saying "keep the faith," "believe," and various other things...but seeing what we see and feel every minute of every day...knowing our days are numbered...makes all of these things beyond challenging. We pray. We "believe" in the ultimate healing. We bless him with holy water and various other things. We "keep the faith." But what is all that getting us.....not our baby. So it takes EVERYTHING in me to continue believing in all these things...I am beyond challenged. I cry all the time, but still push through and demand myself stay strong. It's so fucking tough not to completely crumble. Caring for him...doesn't require strength...It's a privilege I'm just being a mom. Cole's mom. It's what I have to do. It's what I get to do. I love that sweet human being more than life itself. I cry as I type this but I get to type it while sitting next to that sweet angel while he rests.
I can't explain what this has been like. I just can't. Too many details, too many small things, and it's unimaginable what it's like taking care of a child in this condition. And during Thanksgiving and Christmas. Where we are supposed to be thankful and celebrate so many things...hmm...
This is just all I can type for an update right now.
The continued prayers and support are greatly appreciated. We need continued prayers for strength. I don't know when I'll post another update but please know that we are beyond grateful for all of you that havenn't left our sides throughout the past 6 1/2 months, and the love you've shown Cole and all of us.
#TeamCole🎗
Comments (42)
I love you so much buddy!! I so wish I was closer to be able to do anything to help you!! This F-ing sucks so much and it's not fair....Sending love your way!!
There are no words anyone can say to make this better. If there were, those words would have been spoken a long time ago. I think about the Harry Potter movies and the Time Turner that Hermione used. Oh, if only it were that easy, so many of us would have made things better for you long ago. The only thing I have to offer is love, understanding, friendship and prayers for comfort and grace.
Praying for you all. Stay strong. #TeamCole
Our prayers continue for you all.
Sending prayers for strength and peace for you and your precious child. Know that there are so many of us who care for you and would do anything we could to change things for you.
thank you again Shannon for writing this update. this is Calvary. Mary will stand with you. It hurts all of us. I will keep praying for all of you and trusting.
Shanda I'm so sorry!! This is not fair, at all. Your strength and abilities continue to amaze me. Cole gets his strength from you and Steve, that's easy to see. I love you all and you remain in my thoughts and prayers always💚
I'm so sorry, Shanda. My heart breaks for you all as I read this. I wish so much that we could grant you a wish that takes you back to the time before all of this, that heals Cole and makes everything right again. Words just seem so hollow right now. Sending you strength and courage.
Shanda- My heart hurts so much for you, Steve & Cole. Br. Jared (my former student) who's in Rome right now is continuing to pray for Cole. (He's the one who told me about Fr. Kapuan.) I'm sending you love, strength, and more love. I'm crying with you, so angry and sad that this is happening to your family. You all are loved so very much.
This just breaks my heart! I hate, hate, hate that you and Steve feel so much pain and helplessness. More than anything, I hate that your beautiful baby is unable to tell you how much he loves you both, how much he adores you and knows how very lucky is is to have such a wonderful mom and dad. He is your world and you are definitely his entire heart. Hugs and prayers!
Oh Shanda, my heart hurts for you so much. You are so strong and such a wonderful mother to Cole and I'm sure he feels your love. We pray for all of you everyday. Hugs and prayers to all of you.
Wishing there were something I could do or say to take your pain away. I'm just so sorry. Thinking of you guys always and sending lots of love and hugs!!
You are facing the unimaginable with tremendous grace. I'm sending peace and comfort to Cole and strength and endurance (beyond what you've already tremendously demonstrated) to you, Steve and your families. There's so much in what you're experiencing that makes no sense at all, but it's crystal clear that Cole has been surrounded by intense and unwavering LOVE throughout his illness. You're all amazing warriors. Sending love your way.
I have no words and cannot begin to imagine your emotions. We continue to pray for all of you asking for strength, comfort and grace. You have a huge network of people who would absolutely change things for you if we could. Our arms are open for hugs anytime. You are one terrific mother and a great example to others. Cherish every moment with your family.
Shanda, nothing is fair about this...nothing is ok or will make it ok but I hope knowing that your precious baby boy is impacting so many people brings some small comfort to you, Steve and your little hero....I have never met Cole and seeing your updates, watching the support of the KU team and all your friends and family, is inspirational. I know hearing this does nothing for you guys or for the pain and torment but I wanted to share how Cole, your amazing little boy, has touched the heart of us and our boys and we have never met him. The other day my 9 year old son, who also loves football, said he was praying for Cole and for his parents. It almost brought me to tears because I know how precious your child is to you....he is precious to so many people, even other little boys who just hear about him and his bravery. We are all praying for you and continue to ask the Lord to pour some mercy on you all at this time! Cole is a rockstar and so many people will continue to be blessed by knowing him, his story and hearing about his courage. So sorry all of you are going through this.
We all love you so much, Shanda! It really hurts to read what you are facing. Just keep loving that sweet, beautiful Cole. We love you!!!
My heart goes out to you. Keeping the prayers going. You and your family are loved by so many. I hope you can feel our love. No words, just sending love, hugs and prayers
We continue to pray for you and your family. I cannot imagine the pain you are feeling.
Sending you so much love. Continually praying for strength and peace for all of you.
I'm so sorry you guys are having to go through this. You've shown such strength and grace throughout but know that it's ok to be mad and sad and whatever else comes along, if only for a little while. My heart breaks for you. I think about you guys and say a prayer for you every single day. Please know that so many are sending love your way.
I'm praying for your strength as you care for Cole. I am encouraged by your strength. I find myself praying more for you everyday. Sending love and hugs to you all.
Constant prayers for all of you.
We constantly, many times daily lift you all up in our prayers of healing and strength. Our hearts truly hurt so badly for all of you, and we cannot even imagine having to endure what all of you are faced with. God be with each of you and all of your families.
Praying for a strength that I can't even imagine exists. May ever moment be filled with Cole knowing how much he is loved. His strength is also telling you how much he loves you.
Daily prayers for Cole and his family. God Bless all of you.
I can't begin to imagine what you all continue to experience. It truly is incomprehensible to me. Sending love and prayers to you all for strength and peace.
You are right - - I can't imagine the heartache. You have every right to be angry. We will pray on your behalf. You can just focus on your baby and love him through the biggest challenge of his life. You are an incredible mother. You are Cole's parents - - yes, as you say, it is a privilege and an honor to love him all the way through. You can do it. We will all be praying.
Shanda I'm so sorry. I don't know the right words to say to comfort you. I try to write words of comfort but erase them because I don't think they sound right. I don't understand why this is happening to your precious baby. I will continue to pray . I pray to God to show mercy and give you, Steve and Cole strength and peace.
Praying for your continued amazing strength. Crying for your broken heart and Cole's unfair fight. Truly wish I had a magic wand to make cancer disappear. ❤️
You all are in our constant thoughts and prayers. You all are surrounded by much love, though we can't help you, we are here for you. Please God show this wonderful family mercy. Please help this child.
Continuing prayers for you all and for sweet Cole.
I am so sorry for all of you. I am praying for strength and I continue to pray for a cure for Cole! My heart is breaking for you, Cole and your entire family. Know that you and your family continue to be in my daily prayers.
Shanda, like everyone else I have no words. Only endless tears and shear heartbreak. It is just not right for a sweet child to have to endure something so horrible. I will continue to pray for continued strength and grace and for Cole's peaceful transition when the moment arrives. This is all so unimaginable. I'm so, so very sorry. You are all in my constant thoughts and prayers.
My heart hurts as I try to write the right things to say to just express how sorry I am that your family has to endure this nightmare. I continue to pray for your family and want you to that you all are absolutely amazing. Lord please grant the Hayden's comfort and peace during these devastating times. Love and prayers as always.
I read your post yesterday morning. It has taken me 2 days to comment because there is no comment to heal your pain. No comment to give hope to this madness. No comment to overcome all those negative emotions you have. The only thing I can scream is where are you God. Are you listening to all these people who are petitioning You for a miracle for Cole and your family. Why don't you answer, God? This is not a just event in there lives. Please take this cross from them. I want to believe but You make it hard. What justice is there in putting a 7 year old , wonderful, smart, talented, gorgeous, superhero through this pain & suffering? I scream again where are you God. Gloria
I've thought all day about what possibly to say, including after talking with Gloria. The eloquence and dignity through such pain. The privilege of being his mom. I will not forget that. Many have been touched by this. I know I have, even though I haven't met you all in person. You remain on my mind and in my heart.
I am so terribly sorry Shanda. This sucks and I cant understand the 'Why' of all this but please know you are loved and supported by so many people. Thank you so much for the update and honest heart felt truth of your journey. You guys are in our prayers and thoughts and I would give you the biggest hug in the world right now if I could so here is a virtual hug that will have to do for now. XOXO, Love-A
I just want to write four letter words. I'm mad as hell for you and it kills me I can't do anything for you ... to help or make it better. Continuing to pray for all of you and loving you from afar. And it's not good enough. I'm so sorry Shanda.
I am just sure your heart is breaking... As I read these updates I feel so much sadness and anger. We should have a cure for cancer and Cole shouldn't have to endure this pain. I hope for only the best and know that you are all in my thoughts and prayers. He is such a handsome little boy and truly a fighter. I am just so sorry that all of you are suffering through this. ❤
Shanda, my heart breaks for you. I can not imagine the pain you and Steve are going through. But I know that precious boy loves you both and knows that you are doing everything in your power for him. I will continue with prayers for you all and that you have the strength to take each day at a time and savor each moment you have with that precious boy!
Shaunda, all I can do is pray. I am so sorry I can't think how to do more. You are a wonderful Mom. Thank you for reminding us of the honor of caring for a loved one. Prayers and tears continue. I know Cole feels your love and Steve's as well as all that is being sent from afar. Cole and your family have touched so many lives through your generous gift of these posts. Thank you.
I will never understand it. My heart breaks for you Mrs. Shanda, little Cole has suffered the unimaginable. No parent should have to endure such pain but you have done it, shed tears, prayed, kept the faith and inspired Jayhawk nation through this tragedy. Words can not express how I hurt for you as you played such a large part in my life. I will forever be #TeamCole. Love you guys.