October 17, 2016 ~ MRI update
Wanted to get a brief update on here as so many have sent well wishes for our brain MRI today and have been anxiously awaiting to hear.
At some point I'll post more because this is taking everything in me to type this but I'm just...going...
We can't begin to understand this at all.... at a complete shock to everyone including the doctors, our brain MRI was very very bad. Our baby has numerous cancer spots all over his brain, probably at least more than 40 we're told. They do not think this is curable. The hope is to find a treatment to "slow things down" to give more time.
Since we haven't had an MRI on the brain before, because you can't do complete body MRI's on children, we don't know when these appeared. And it's very rare for this sarcoma to move to the brain. But this nasty, evil stuff travels through the blood. But, they were not on the last PET scan. So we don't know when they first appeared and how big they were (if they're smaller) but they're likely more recent. Because there are so many numerous spots it's not like a surgeon can go in a remove them as if it were just one spot.
Our doctor is still consulting with St. Jude and others. These scans will be sent back there as well as Boston Children's. Both will have to evaluate and see if they have something to offer. It takes weeks for places to evaluate and assess so we want to start with the places that have seen his previous scans so he's not brand new to them. And, places have to assess and decide if they have something (treatment ideas) to offer. We'll likely also send to MD Anderson in Texas as well since they also have a good sarcoma center. But again, it will take time for people to review, make recommendations (if any), etc. Time is not something we have to spare.
To answer your questions... no, we were not given a "timeline" for things. Yes, we are/will be exploring places everywhere. Yes, we are open to trial experimental treatments anywhere in the world. No, we aren't just staying in Kansas City and accepting this, nor is our doctor. Nor has she been just keeping things in KC. Our doctor isn't giving up and will continue collaborating with others. It takes people to know people to expedite things and to get people to even take a look at him, etc. We can research the internet, etc. but it will always be hard to decide which place to go or which treatment to do. And YES, we are open to ideas, etc. We can't research all this alone, but again, it's so overwhelming, especially when searching the internet.
Cole has had such great progress on his other tumors and has felt fantastic this past week. This past weekend was so awesome. Full of energy, spirit, laughs, activity, and just more happiness - he has felt so great. We got to see the real Cole that we haven't seen in months. It has been so beautiful. So his treatment HAS helped some things. But we need to figure out this brain stuff before even worrying about surgery on the lungs, etc.
He will continue chemo in the meantime while our doc and others determine the revised plan. Instead of admitting him today for chemo she wanted 24 hours to think and consult because if he got chemo today/tomorrow then he wouldn't be able to get another kind for two weeks so we want to wait a day or two and see what they all recommend since time isn't something we have to spare.
So we are back home for now. Cherishing every single second while we continue fighting and exploring. We should know more in the next day or so.
We are not telling Cole what's going on. We need him to continue fighting with all his strength and courage just as he has been doing.
We appreciate you all. Please continue your prayers. WE NEED THEM. We need a miracle and we will fight with everything we've got.
We know there aren't words to say...we know the love everyone feels for Cole...and we appreciate all of it.
#TeamCole馃帡
Comments (53)
Hope and prayers! Have no idea how hard this post must have been. You are amazing. Stay strong!
I have no words. If you need anything, ANYTHING, let us know.
Prayers continue
I don't even know what to say. It seems like Cole having such a good week last week was such good news, it even caused a sense of relief. Now with the MRI showing spots on brain it brings relief to stabbing in the gut like a total let down. We want to never loose hope & faith that God will give us the miracle for Cole to fight through this. We will keep praying and praying and praying, that you are lead in the direction that will bring healing to Cole With Love & Prayers, Gloria
Shanda - My heart breaks for you and Steve and your families and for sweet Cole. I know that you will continue to have hope and to fight an amazing fight. I cannot make sense of Cole's situation. It's been great to see authentic smiles come through in recent pics and you can certainly tell that he is feeling better, which is such a blessing. I hope that some options efficiently fall into place for you and Cole's medical team. Don't give up (I know you won't)! Sending so much love and prayers your way.
I just want you all to know that the whole Hayden family is in my prayers and thoughts. You are so right, this ugly disease is so mean and it seems to pick on the good ones. Love you all. Ken Woods
I am so sorry to hear of this. I am at a loss for words right now and cannot imagine your pain. Please know you are surrounded by so much love and prayer. A
Your post was tough to read; I can't imagine typing it. We will keep the prayers coming for your entire family. It definitely seems Cole's doctor has his best interests in mind and is doing all she can. Keep being the best parents and enjoy every minute you are with Cole. Life is so precious!
No words. Tears. Prayers and hope and strength are sent. Fr. Kapaun from WW II from Hutchison or thereabouts needs a miracle to become formally recognized as a Saint of the church. Let this be his miracle from God. So glad Cole is feeling so much better at this time.
Praying for all of you, Shanda.
Praying, praying, praying. My heart breaks for you.
Dear God, please hold Cole in your healing hands and loving heart. Comfort his family with hope and faith for a brighter day. Always in our heart. Missy & Milo
No words. I love you all and just can't understand why this is happening. We are all in your corner and will continue to pray for strength and health.
Love, prayers, and healing energy continue to Cole and you & your husband. Much love. Many prayers. And TONS of healing energy & thoughts. I wouldn't bet against Team Cole! <3 <3
My heart is bleeding! Prayers continue for Cole, you, and Steve!
All Cole's prayer warriors will continue in asking for God's healing powers for your sweet boy. Keeping you and your family close to our hearts.
Sending love and prayers!!
Praying for you guys.
God's mercy is so great, Shanda. I am thinking of you all and keeping you close in thoughts and prayers.
I have no words right now. Please know I'm praying for you and your sweet boy. If I can do anything please let me know.
Praying for all of you, Shanda.
Wish there was something - anything - I could say or do to make this better. Love and prayers.
Shanda, I am so sorry to hear this news. Rob and I will continue to pray for Cole and your family.
Shanda, we were all praying you wouldn't get this news. Love your pics from the last few days. Cherish every second with your Cole. Your prayer warriors are still at work. Hugs
Deep ache for you mamma bear. Your strength is outstanding so we know where Cole gets it. I wish my network included world renowned cancer doctors. I do believe in #teamcole and miracles. God bless you, Steve, and your little warrior. 😘
I am so sorry you received this news. I can't even imagine your heartache. We are praying for you and asking God for healing, comfort and wisdom. May He lead you to just the right doctor and treatment. Love and hugs...
So sorry to hear about the results of the brain MRI. Heartfelt prayers as your family and doctors move forward in discerning treatment. Love that Cole has had this time at home. Our prayers are always with him and your family.
I am so sorry. I am continuing to pray for Cole and your entire family. I do believe in miracles and we are praying for one for Cole!
So saddened by your MRI report. We continue to hold Cole and your family in prayer.
Sending love, prayers, and support for Cole and your family.
There's not a day that goes by that we aren't praying for a miracle! Continued prayers for you all!
Its so incredibly sorry to hear this bad news. My heart breaks for all of you. I am constantly praying for your family and I can't even begin to express how amazing all of you have been during all of this. May the Lord wrap His love all around your family and I pray Cole has good , pain free days. Love and prayers.
I have no words. Just know how much you all are loved. We continue to think, pray and fight for you.
My heart is so heavy reading your post, I can't even imagine all of the thoughts racing through you mind. I do believe in miracles and will continue to pray that Cole gets his miracle. Know that he is loved by many and praying for him to have the strength to battle this terrible disease!! Continued thoughts and prayers for you all!!
I'm so sorry to hear this. Know that you guys are always in my prayers.
My heart is breaking for you... We have been thinking about Cole and praying for you all. Loved seeing those smiling pictures of Cole and hearing about how good he had been feeling. Continued prayers...
Lots of love and prayers for all of you!!
My heart aches for you all. Continued prayers, support and love for sweet Cole and your family.
Miracles happen all the time and I am praying my heart out for Cole. I made a card with his name and put it over my kitchen sink... I spend a lot of time there. I will spend that time praying for your sweet baby. And when I'm not there, I will be loving my babies and savoring every second. My heart is with you all鉂わ笍
My heart aches for you and your family. Cole is in my thoughts and prayers everyday. #teamcole
Shanda, my heart aches for you and your family. Sending you love and support.
Shanda, I can't even begin to know what to say other than keep fighting and DO NOT GIVE UP!!! Miracles do happen and we're all praying for Cole's miracle. Praying hard and sending so much love your way.
A prayer request was sent out from The Gall family for Cole and your family. I will start praying immediately for all of you and the medical teams involved. I can tell you I have been a recent patient of Dr. Ratan in the Sarcoma unit at MD Anderson in Houston and yes he is wonderful.
Sending lots of prayers your way from the Wagners. Glad to hear Cole is in good spirits.
If you guys need anything let me know I can make you food do earns for you around town. Prayers with you and your family. I can't imagine the hurt you feel.
There are no words. We pray for you all every day and were so encouraged by the wonderful time you have been having at home. We will continue to pray even harder.
Our prayers will continue for Cole and his medical team, as well as for you and Steve. St Anthony is known for miracles, so I am asking for his intercession on Cole's behalf. It was great to see Cole carving a pumpkin with Grandma Pat over the weekend on Facebook. He looked like he was have a great time. God Bless.
Prayers for Cole as he fights through this. Prayers for your family, Shanda. Sending many hugs.
"Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them," (Mark 11:24) Dear powerful and Almighty God, you are the great physician. Although we do not understand sickness upon our young, you do. Your Word tells us if we have faith as small as a mustard seed, we can move mountains. I am asking this mountain be removed from the Hayden family, and especially from Cole. Send down your healing mercies so that all may believe You are our Eternal God of Mercy, Love, All-Powerful, Just, Holy, Sovereign, Good, Truth, and Faithful. Are hope for Cole's future rest upon You, oh Lord. We give thanks for hearing our prayers, In Jesus name we pray.
Shanda, My heart breaks for you! You have my continued thoughts and prayers........Stay strong. Love you, Juli
Continued prayers for all of you...
Your scriptures are encouraging and true! Remember prayer, hope, encouragement are always going your way! So glad to hear Cole has been like his old self! Will be anxious to hear what your doctor thinks Cole's treatment will be. Dear Lord, It is the desire of our heart for a Miracle! Love, Mary Lois Was so good to see Cole in his Cole shirt. So cute!
So sorry for this bad news, but your prayer warriors will not quit praying for this little darling and your whole family. May God guide these doctors to find a cure for Cole. Many prayers and much love is being sent your way.