November 14, 2016
Cole is stable.
We stayed in the PICU Wednesday night then moved to the HEMOC floor Thursday evening (our home-base floor if you will).
We did not know if Cole would speak again or what his mental/physical status would be. As previously stated, the hope was that steroids would help reduce swelling on his brain and there would be a chance for some activity.
Cole started his new chemo pill Friday so he has now had 7 doses of it. We wanted to continue with this treatment in hopes that maybe it would shrink some of the lesions at least to buy us more time. He's on the maximum right now to start in order to try to make an immediate impact but would eventually adjust the dose depending on his status.
The steroid started working on the swelling as hoped and our sweet angel woke up and spoke to us on Saturday. Doctors did not necessarily expect this, especially so soon given his condition when he came in. All I begged for each day was to hear that sweet voice say "mommy" at least one more time and at least the Lord granted me that. Seeing those beautiful blue eyes open was breathtaking and hearing that voice more than filled our hearts. Fortunately as soon as he woke up and spoke to me I grabbed the camera and videod him moving and talking. I got to record him saying "I love you mommy and I love you daddy."
The tremors/shaking have been better controlled with medication so he seems to be able to look/feel more relaxed. Due to where the biggest lesions are on his brain it's not likely we can expect more than we're getting, but we'll take everything we can get. He tries to speak but it's challenging so we don't try to force it. I can only imagine how frustrated he feels inside. He's able to understand us and we're working on ways to communicate. Our biggest concern is making him comfortable and without pain which he lets us know is ok.
I'm keeping things technical and simple here because I don't even want to get in to what goes through our minds..we don't know if he feels trapped inside and can't talk, if he feels scared, or if he feels ok from medications helping him relax so things are ok. We just don't know.
The doctors felt he was able to go home Friday but we weren't ready so we're still in the hospital. They aren't pushing us out by any means and have told us we can stay as long as we want. Our goal (mentally) is go home this week. Home health is set up and we've enrolled in hospice. Hospice doesn't mean giving up but means that we're agreeable to any assistance to make things more comfortable at home for Cole and to have nurse availability through that and Visiting Nurses should we need anything. Probably our biggest challenge with letting go here is being away from urgent/critical care assistance should something happen. Additionally, we just felt more at ease having him here when starting all these new meds even though medically he didn't need to be. His heart rate is different now too which is an adjustment. It drops incredibly low when he sleeps so we have to get used to that. We've had almost 6 months of knowing his "norm" and now he has a new norm to get used to. But we can't stay here forever. Well, we can I guess but are choosing not to.
This weekend Cole was awake a lot and tried his best to communicate. He tries to laugh and smile sometimes and speaks when he can. It's subtle and not full movements but we know he's laughing or smiling. We've seen him try to "play" a little football with his buddy, wrestle dad's hand, communicate with his grandparents and our friends, and just overall he's "trying" to do what he can. Everything is a challenge...it's tough for him to move, tough to speak, tough to communicate and advocate for what he needs.. but this kid is so fucking tough it's unreal. His determination and will to do things is incredible. We can't even imagine how hard this is for him not being independent with things and Lord only knows what's going on in his mind.
Hope...that's a tricky word. Hmmm...hope.. We understand the reality. We've had to make and continue to make the most difficult decisions any parent can make.. life-saving measures, DNR decisions, hospice, etc. I can't even explain this to you. It's unfathemable, but our reality. But hope... well, for now that's what gets us through the day. We take one day at a time and force ourselves to maintain hope. Hope that swelling will continue to ease, hope that he'll continue being able to communicate and speak, hope that this pill will help SOMETHING, ANYTHING, to give us more time. They say there's no cure, and we know what developed in just 3 weeks so far, but as long as we have hope and believe in miracles we'll get through the day. He's made it through things they didn't expect him to so far. And we have to make the most of each day because we don't know which day will be our last. That's the reality.
I don't know how frequently I'll post here and it took me a few days to do this one. We know Cole is so incredibly loved and we continue to be grateful for all of you and the continued thoughts and prayers for a miracle.
#TeamCole🎗
Comments (30)
Continuing to send prayers, strength and hope your way, plus many, many hugs!
Heartbroken and hopeful. Praying for a miracle. ♥
Thank you for posting. It must be terribly difficult to do, but we are very appreciative of your efforts to do so in this unspeakably challenging time. I am continuing to pray for miracles for your incredibly precious, brave amazing boy. Oh, Lord, You are able! Touch him and heal him!
He has been constantly on my mind today! So very thankful that he is awake and able to communicate!! Continued prayers for you and your family!!!
Prayers for courage, hope and a miracle! Sometimes hope is all we got that gets us through the day. Thoughts and prayers are with you and your families. I can't imagine the heartache you're going through.
Shanda - thank you for allowing us to visit and hear Cole talk to you guys. Even if he just wanted us to all be quiet so he could listen to the game. We love you all and you continue to be on our minds and in our prayers.
So very thankful Cole has been able to speak to you and Steve, even if just a little bit. He is such an incredible little warrior! And you and Steve, well, there are just no words to describe the toughness it takes for you both to remain strong for Cole. Praying constantly for strength, comfort and healing and not giving up on a miracle!!!!
Continued prayers for more days/weeks/months with that sweet little boy. We can't fathom the emotions that you and your family are going through, but hope that it helps a little knowing we are are praying and thinking of you all!
Continued prayers for all of you. Keep erasing anything I write as words are not adequate. Love strength hope
🙏❤️💙
Continued prayers. May you find the strength you need and the hope to get through this. May Cole continue to improve I am so glad he woke up and is able to communicate with you. Love and prayers to all of you.
Continuing to pray for you all from Florida. Your love for your beautiful son is undeniable. May your love for him and for each other carry you through the hardest of times. May you feel some sense of comfort knowing that there are so many people praying for you and your sweet Cole.
I can only imagine how hard this post was to write. Know that you, Cole and your entire family are in my daily prayers. May God give you strength as you continue to carry this heavy cross. May Our Lady wrap her mantle around you. I am continuing to pray for a miracle!
We continue to pray for a miracle for your sweet boy.
All of you are in our hearts and prayers. May holy Mary and Joseph watch over your family and especially sweet Cole. Thank you for your updates even Though they are hard to write as they are very much appreciated.
Love, prayers, and more prayers. I am praying every day for a miracle. Love to you, Steve & especially Cole.
I have hope, faith and love for your I entire family, especially Cole. I know that miracles happen every day and there are small miracles happening with Cole. The miracle of his smile, the miracle of his laugh, the miracle of his saying I love you mommy & daddy, the miracle of him being awake. These small miracles may be the precursor to the grand miracle of complete healing. That is my continued prayer, hope and belief. For now we'll take any and all small miracles waiting for the granddaddy of all miracles..
My prayers continue and it's wonderful news to hear Cole's able to communicate again. God bless you and your family during these tough times.
You are amazing! Hope, faith and prayers!
I'm so happy to hear the positives, Shanda. I want to encourage you to have FAITH! Believe that God can heal Cole! Hang in there. You are doing such an amazing job.
Many prayers for all your family...may you be surrounded by love and prayers
<3 <3 <3
I am in tears reading this and so incredibly inspired by Cole and by you and Steve. I just pray to Jesus that he showers you all in His grace, His love and His peace. There are no words, just love that can only be sent through prayer. You are amazing and Cole has been and is your miracle. What a blessing to all who know him. The Hardesty family is praying for you guys!
"And now these three remain: faith, hope and love. But the greatest of these is love." 1Corinth 13:13 Faith that Cole is in God's hands. Hope for a miracle. Love never fails.
We are friends of Ashley and Winston Mille - We pray for you. We pray for Cole. Know that you are not alone! Ken & Kiersten Allen, Louisburg
this is Jill's mom...wanted you to know I'm praying really hard for that miracle!!! God's Blessings on all of you!!
My son is a student at sacred heartschool he prayers every night cole will be able to come back to school. He asks god to help cole get better. Your family is In our prayers every day and night.keep Hope and miracles do happen. With much love The martinez family
Hugs and kisses to you all.
God is amazing and our prayers are for His healing Hands to be upon Sweet Cole. Miracles occur every day and through the many prayers and faith in God, we believe He will heal Cole. Sending our love to you all and of course we are praying many many many times throughout each day for your entire family. God Bless each of you. Chuck and Janet Konrade (Bret's Parents) Spearville, KS.
Wishing all of you a Happy Thanksgiving filled with love and prayers. God bless all of you.