November 10, 2016 ~ News & plan
This is all I'm posting for a while. I know you all understand as our lives have been shattered.
MD Anderson got back in the meantime and don't feel they have anything to offer.
Brain MRI came back. Not good. Everything is about 4 times bigger in the three weeks it's been and there are also additional lesions. Just got EEG to rule out seizures which everyone already knows is not the cause but let's go ahead and check mark that box to officially rule it out. Results did not show seizure activity.
We've requested ALL possible measures to extend his time. After a small shitshow with finding this pill, insurance and such in getting this damn stuff, it will be here tomorrow morning. The hope is that it will help shrink some things to help buy us some time since we know it targets two of the mutations of his disease.
Going to give him steroids to help swelling and maybe he can wake up some and there's a chance maybe he could talk but we can't hold out hope. But we will. He'll get another med to assist with tremors but he only has the tremors when awake and he's been asleep since last night.
Yeah I've fucking answered all the damn awful worst-case scenario questions.... try any possible medication to help with anything at all, exhaust all possible life-saving measures to keep him alive, look at getting a hospital bed for home, arrange home-health care, do we want to utilize hospice and such, yada yada, etc. We fucking need time. However we can get it we just NEED it.
Yes we are fighting. Yes we are exhausting all possible measures to buy us some time. Yes there are fucking no words. Yes we are snuggling and taking every minute with him we can get. I'm waiting for someone to wake me from this damn nightmare because I can't imagine a world without my only baby in it.
That's all I've got for now.
Thank you all for the continued support. Truly.
Comments (22)
OMG. I am SO SO SO SO SO very sorry. This makes me absolutely sick to know that you all are going through something none of you should EVER have to go through. So many prayers from the Hoss house.
I am so sorry for you and your entire family. My heart is breaking for all of you. I am praying non-stop.
I am so sorry for this awful turn of events! Continued prayers for you and your family during this time! Just heartbreaking!! :(
What can I say to give you hope, what can I do to ease this pain, to give you peace. Nothing, Nothing, Nothing damn it nothing. You have all our love and prayers. That is all I can say.
Damn. 🙏🏻❤️
Absolutely heartbreaking! Please know the Roney family is praying for you and your family during this difficult time.
We send a hug to all your family and Cole with our prayers. So sorry for this heart=breaking news. May God find a way to offer you some comfort. We remain in daily prayer for your beautiful child and your family.
Though I have not left many comments, I have thought of Cole and your family every day in prayers, in hope, in heart. I have told friends in Texas about this extraordinary family I know of through Gloria, this family that needs our prayers, and they, too, are praying.
As my tears fall and my heart continues to break, I am wrapping you all in love and prayer and at the same time cursing this God damn terrible disease!! Shanda, thank you so very much for allowing us all to be a very small part of this with you through your blog. You are a pillar of courage, grace and true grit. But now go be with your baby and don't even think twice about posting on this blog!!! Keeping us informed is so incredibly unimportant right now. I am so very, very sorry this is happening. My prayers continue. Love to you all ❤
Speechless. I pray for peace for all of you. Prayers up🙏👼😔❤
Shit. Shit shit shit. Shanda - we all love Cole, you, & Steve. Continued prayers and hopes for miracles.
1 Corinthians 13:13 "And now these three remain: faith, hope, and love; but the greatest of these is love." The love you have for your son is so beautiful and I know he loves you just as much. Your family has endured so much and my prayer is that God grants your family all the time that is needed. Also, I pray that God equip the doctors with as much knowledge of options/resources as possible. May God peace hover over your entire family during this incredibly difficult time.
Continued non-stop prayers going up.
Sending love and prayers continually for all of you.
I am utterly heartbroken for you all. It is unspeakable and crushing. I am deeply, deeply sorry. I will continue to pray for darling Cole, and for all of you.
Continuously praying for your family 🙏🙏🙏
My heart is aching. I'm sending love and prayers.
I have no words for you. Please know how much you and your family are loved. Prayers for God to keep his arms around your family. You have been so strong and such a wonderful example to so many. You have shown such grace in dealing with this tragic situation. Love and prayers always! Lynn and Jean
Shanda, i don't have one single word that can comfort you adequately right now, but i can keep Cole and your family continually lifted in prayer! Sending love to you all!
Shanda, you are all so brave. Thank you for taking the time and energy to keep us updated. I admire your vulnerability and strength through the toughest scenario this life could offer. Cole is the sweetest treasure and I hope and pray he feels moments of comfort and relief.
Bless your hearts. There are no adequate words. Praying for more time for you with your precious boy .🙏🏼
Our prayers continue...🙏💙🙏