July 11, 2016
We finally got pain management under better control this weekend. It was relieving to see him with longer moments of comfort to the extent that he could actually sleep some. Still not sleeping a lot, but more than he was and with a few naps added in. We've had fevers again throughout the days and nights unfortunately. We've had blood cultures and antibiotics to make sure they aren't from the surgery or PICC line. Sadly, like before, they are most likely just from the tumor(s) in the body.
We are down getting our PET scan which will light up all tumors in the body, specifically looking at all his organs. We are praying there isn't anything new or that things haven't grown and spread since last week. However, at the rate things were growing in just a week's time twice before and since only part of the tumor was removed, we are trying to stay cautiously optimistic. It's so hard to even watch him go through all of this, I can't describe how even the little things are hard to watch.
We will also get our NG tube (feeding tube) today to help with nutrition. He's nervous about that and doesn't want to look silly. He's so self-conscience right now, it's so hard to see. We've tried to reassure him he won't look silly and nobody will talk about him having it. He seems to be ok with it now.
We knew chemo needed to start ASAP but weren't sure when as nutrition and strength needed to improve. It sounds like there's discussion he may actually start chemo today which we weren't prepared for. But we'll get there.
So today is a high anxiety day for us all, but we are pushing through as best we can to push through. It. Is. HARD.
We worked so hard to have a mentally strong weekend. Overall, we were successful but we ALL had our moments. Friday was the worst day for me emotionally. For the first time we've seen, Cole had a really rough moment himself. He woke up and after a bit amd he got so upset about things he was bawling while covering his face with his hands saying he hated himself over and over again. It may have been the hardest thing so far next to him asking if he is going to die. I could not contain my tears but tried my best to comfort him. I think him actually seeing our emotions (just sometimes) helps him feel like we understand. We talked through it all and he seemed to find his strength and agree we will keep fighting. He's been having bad dreams, of course, and we'll hear him wimpering in his sleep. Sometimes he'll remember and tell us about it when he wakes up.
This week will be 8 weeks of this hospital thing, 10 weeks total of this whole ordeal. Sometimes I just sit/lay down and reflect...I still can't believe we're where we're at. I really can't. We've lost the whole summer and school starts in a month. I see all the family vacation or child sports/fun photos people post on social media, which is great, but it pains my heart to think about the fact that we spend 24/7 here. We mostly watch tv, play games only every now and then but rarely, and just focus on comforting the pain and mental well-being of this little angel that just lays in a bed. We try to take good care of ourselves too and take little timeouts. But it's hard to work on our jobs, we aren't exercising here, and it's mentally draining and we're exhausted every day. It's hard to describe how much it takes out of you when you aren't even doing anything physical. It's crazy to see life going on outside of here and we're just stuck..
It's so incredibly hard to even describe what it's like being here every minute of the day...all 1440 minutes, with no real idea what the future holds for this little person that is my/our whole world. We are scared to death and our hearts are broken. Yes, we are staying strong and ready to fight...but we are also human. It's like a roller coaster of emotions quite honestly and it takes everything in us to push through every minute of the day.
This may be one of the saddest posts to read, but so many people ask how we are doing emotionally, physically, etc., and I feel the need to be honest..it's been 7 weeks of this. But because I am as strong-willed and as stubborn as I am, and I refuse to be defeated, I will end like I always end..with strength..
We will kick cancer's ass...but we need the army of support and prayer soldiers that we have in you all to help us through.
Bless you all and this angel of ours 🌟
Comments (26)
Love you guys. Thoughts and prayers.
Shanda: I'm glad you're telling us how you feel; you guys need an outlet, too, and we're here to listen! We're all praying hard for you all.
We are constantly keeping you guys in our thoughts and prayers. This was a tough post to read (so I can't begin to comprehend how you guys can stay so strong and brave), but I so appreciate your honesty about how you are feeling and the regular updates on Cole! I just wish there was some magic trick we could perform to take some of the burden off of you guys, to take some of the pain away from the uncertainty of everything. Stay strong, stay brave! Cole will get through this.
Shanda I truly don't know how you guys are handling this. My heart aches with every sentence I read, but know we are all praying for you. Keep fighting.
Thinking and praying for you all! I appreciate your honest updates and wish there was more I could do to help you along this path. If you think of anything, please do not hesitate. ❤️
Stay strong! Many prayers and much love for all of you.
You have our total support. Anything you need that we can help with. For now we are your prayer warriors
Keeping you all in my prayers.
Our hearts break for you just reading this post. We have no real idea of your pain but you express it so honestly and with so much love for Cole. We will continue to pray for you all everyday and I'm sure Mary Lois is saying that extra prayer every morning at Hope House.
Praying for you honey, praying for all of you. Cancer. I hate the word. It seems to be affecting everyone I know and that is a scary reality. My question is one word, Why? Keep hanging tough. Your strength is just what Cole is going to need.
Team JCJP has got your back with prayerful support. We are Warriors on a Mission" and that includes Cole and your family! Feel the love and support! We are grateful that Laura Dorsey has their love and concern for you all with us💙
Our hearts are broken for you. We love you, Cowboy Steve, and Cole very very much and pray for you always. 💚💚
Shanda, I'm not sure you'll remember me, but I teach at the School of Business, and I just wanted to let you know that I will be lifting Cole and your whole family up in prayer. I can't even imagine what you're going through, but thank you for sharing this journey with us. Now go and kick some cancer ass!!
Shanda, Bless your broken hearts. We continue to pray for Cole, for his medical team to find the answers they are seeking, and strength for you and Steve in endure this journey. Continue to lean on one another. Thank you for the updates. I pray your guardian angels are watching over each one of you. May God heal Cole and your broken hearts.
Praying for all of you especially that Cole's Pet Scan is better than expected. All things are possible with God and we are praying for a miracle!
Shanda it breaks our hearts also to see what you guys are going through but know that we are fighting alongside you all the way! There are so many prayer warriors who are praying hard every single day. We send all of you love!!
Shanda, my heart breaks for what your family is going through. I continue with my daily prayers for Cole as he battles this terrible disease. It is OK to break down occasionally after all you are only human and you are a Mom, we try to handle everything and take the hurt away from our children, but sometimes we just have to have a release to let those feelings out, this blog is a good release. Don't feel bad, just let Cole know that you are both there for him and he has a BIG team behind him in this fight. Let us know if there is anything we can do for you, sending lots of love, hugs and prayers to you all!!
Shanda, thank you so much for the honesty about your journey on this. I hope that the outlet and the record helps you in some small way while it allows those of us reading to help carry the burden even in the smallest way. It is indeed heartbreaking because it's so easy to imagine that it could be anyone Cole knows at Hilltop in his place given how completely random and rapid this has been. Does Cole want the company of other kids? Even for just a short time so you can take a walk--whether a slow meandering one or a power walk? I would more than willing to come with Galen and visit for any length of time--whether 20 minutes or a couple of hours and let Cole and Galen talk, watch shows, play Minecraft, whatever Cole is up for...even if it's just falling asleep and Galen and I hang out. Truly, the majority of our evenings are flexible and I can't think of a more important way to use a little time. Maybe if Galen or some other kid asked him about the feeding tube or something else in that blunt way kids do and then immediately moved on to other topics in that way that kids do it would help Cole realize that nobody is really worried about what he looks like. This may not be something that would be helpful at all but I wanted to offer. I truly, truly mean it when I say we wouldn't think twice about making the trek to the hospital and hanging out for any period of time if "fresh horses" would be helpful for the journey. Sending you strength and hugs.
Vent anytime you need to. You must have some way to reduce your stress. It is indeed exhausting and you need to stay healthy. It is ok to feel overwhelmed at times. You will come out stronger in the end. Know we all pray and plead for a treatment program the heals Cole quickly and completely
Prayers, prayers and more prayers.
Prayers will be continuous. I greatly appreciate you sharing this journey with us. I know how much just talking about it honestly can help. I'm here if you need anything. Love you guys.
Shanda, thanks for taking the time to write these updates. I know they can't always be easy. Know that you guys have a strong team of prayer warriors behind you.
Our prayers continue to follow your posts as we seek the Holy Spirit to help us know how to pray for your family, especially Cole who has been so brave. What a warrior he is as he fights to heal. I offer this post to God in prayer.
We think of you constantly, praying for you to be strong and the doctors to heal little Cole. Love to you all. Monte & Carla Long
Steve, Shanda, Cole, Larry and I and our entire family are continuing to send prayers for you. Asking God for healing and strenghth to win this . You are our first prayer in the morning and our last prayer at night.God Bless you all. Larry and Janie Mages
Mark 11:23 I tell you the truth, you can say to this mountain, 'May you be lifted up and thrown into the sea,' and it will happen. But you must really believe it will happen and have no doubt in your heart. Matthew 18: 19-20 Again, I tell you truly that if two of you on the earth agree about anything you ask for, it will be done for you by My Father in heaven. For where two or three gather together in My name, there am I with them.” Psalm 91:10-11 No evil will befall you, Nor will any plague come near your tent. For He will give His angels charge concerning you, To guard you in all your ways.… Thinking and praying fiercely for all these things without a doubt. Hugs and comfort to you all. Jenny (pitter patter)