July 6, 2016. Results
It's with a heavy heart that I write this, but we know our amazing support group has been anxiously waiting to hear if we know any results from pathology. Initial results came back quickly.
Our oncologist came by today - it is cancer. Some rare kind, it isn't identifying with normal kinds..they need more tests to TRY to specifically identify and name it, if possible. We were prepared for cancer as the growth/aggressiveness of the tumor(s) have been malignant in behavior. We just did NOT expect to hear that it is some rare kind they can't identify yet.
We will begin chemotherapy when we get his body stronger as he is still weak and malnourished from everything. Once we are discharged from the surgery team we will move back to the HEMOC (hematology/oncology) 4th floor where they will then control medication and treatment. We can't start anything while on the surgery team. Cole has already made great progress where that's concerned - they initially thought he would need the chest tube for 3-5 days, but it's looking so good that today they removed it from wall suction to see how it continues draining. It's even possible he could get the tube removed tomorrow. He still has the epidural and catheter but has started taking some oral meds to begin the transition off the epidural. He also still has the push button pain pump and pain meds through his PICC line for extra relief.
He will get a feeding tube after we go back to 4th floor this week. The doctor said that nutrition is EQUALLY important as treatment, she couldn't stress that enough. He will then start chemo ASAP because the tumors have/are appearing so aggressive in his body. We'll wait for pending tests to try to narrow down and narrow specific chemo but starting some chemo regardless. The doctor is choosing a chemo that covers some rare sarcomas and is not as toxic to his body as others while we wait for the tests.
They are doing additional groups of stains here and will also send to St. Jude's again. The doctor will be speaking with the specialist at St. Jude's asap as she said he's kind of the "father of rare tumors" so she wants his consultation again. Should they identify this rare cancer and it is better treated at St. Jude's for example, then they will send us there. It has been made clear that Cole will be treated by whomever/wherever is best for Cole. Once they identify this rare cancer then they can identify what stage it is in as well.
We are ready to fight, but we have to know what it is to know how to fight. That's the trouble right now and the scariest thing for us - we don't know what we are battling so we don't know for certain what the cure is. We MUST continue having faith that they will figure it out, and that it can be cured. We know it's aggressive and has grown/spread quickly, and could still spread to other organs. That's what's scaring me most, that we don't know yet how to beat it.
Cole has continued to amaze the doctors. But we expect nothing less, he's incredible. The oncologist was shocked to see him today - she expected him to be on a ventilator in the PICU, but he is in a regular room, moving toward removal of the chest tube, and he was getting out of bed when she came in today. She was so astonished, but echoed what we've continued to hear - that Cole is a fighter. The surgery team told us he had to make himself get out of bed at least once today..so Cole was ready to knock it out and did it amazingly. With all of these tubes and wires in him and attached to him, he was incredible.
Cole is so bright and he understands things he hears. It broke our hearts to have him look us in the face with tears and say that he "doesn't want to do cancer" and asked us if he is going to die. The most heartbreaking, gut-wrenching things I've ever heard in my life. Explaining the cancer was tough, but kept it simple. Telling him that they did NOT say he is going to die brought me to tears in front of him, I just couldn't bare it. But I told him he will NOT die, and we will fight this with everything we can, and that's why he'll have to start special medicine next week.
Next step is getting that chest tube out, getting the epidural out of his spine, and the catheter out so he can potty on his own. All while we build nutrition on our own and build the body up. Then we'll head back to HEMOC and start the next phase - treatment.
This is the absolute scariest thing of my entire life. To see my heart and world laying in that bed when I can't fix it breaks me. But, we have to keep FAITH and TRUST that the Lord will continue holding Cole in his hand, and guide the medical teams to diagnose and cure this monster. This has to be curable, I refuse to believe anything else. We are in for the biggest fight of our lives, but we will FIGHT.
Thank you all for the continued prayers for Cole; we need them now more than ever.
Bless you all
Comments (24)
Prayers! Prayers! Prayers! Oh, how my heart aches for all of you! Although I haven't met you, I am lifting you up in prayers throughout the day! Hang in there! Draw your strength from the Lord above and Rest in His plan! (Easier said than done, but we are all clinging to His promises!) Much love to you all!!
We will keep thinking of you and praying, Shanda. Cole is one amazing kid!
Holding Cole, your family and the medical team in my prayers. Thank your for being so brave and informative in your updates.
What a strong boy you have, stay strong and know we are all praying for all of you.
God bless you and keep you...prayers of strength and battle for the Hayden's! You clearly have the Faith and fight down...keep going...you're not alone.
Although I do not know you personally, I am in tears reading your family's story and preparing for battle...as you prepare, I pray you feel some comfort in knowing that you have hundreds of people that I personally know from our Team JCJP (including Laura Dorsey) praying for you and your beautiful son Cole. May Our Lord provide all of your needs one step at a time. Love to you all, Shelly Mackey 🙏🏼
I just want to hug you all and tell you that the power of prayer does amazing things, I know Cole will find the strength to fight this terrible disease with you both by his side! Thank you for keeping us all updated, I know how tough that is for you, but know we are all with you in spirit.
Prayers and more prayers, healing energy, and tons of love are on their way to you. You Haydens are strong stuff. Team Cole all the way!!
That's heavy. Continued thoughts and prayers. Cole is so lucky to have you, Steve, and the prayer warriors. Love you guys
Thinking of you and your family. Cole sounds like an amazing kid, and a fighter. Sending positive thoughts your way.
Sending prayers, love, hugs, and healing energy your way. Keeping you and Cole in my heart as you fight this fight.
Shanda - Just started following along. Your faith, amazing strength and positive attitude will serve you well for what is ahead. Cole is a trooper. Sending prayers for a full recovery.
Keep fighting, Hayden family! You have a lot of people behind you. Prayers to you all!
Shanda, your strength is absolutely amazing and inspiring, and don't even get me started on Cole. What a brave little guy! Thank you for continuing to provide us with information as you prepare for battle! We are with you and sending prayers and love continuously.
Love and prayers to all of you. We're praying frequently and fervently for healing, comfort, and answers.
Thoughts and prayers to Cole and your entire family for strength and healing! May God bless you with answers and guidance! Cole will remain in our daily prayers!
Sending prayers and hugs. Keep that wonderful attitude and amazing things will happen
Isa 42:13 the Lord will march forth like a mighty hero; He will come out like a warrior, full of fury. He will shout His battle cry and crush all His enemies. Father God come as the Mighty Warrior and defeat this enemy in Cole's body. I pray for Your devine wisdom and revelation to bring to light this diagnoses. I ask that You declare healing over Cole as we all stand in faith waiting on Your voice to proclaim victory. Thank You that You are their front and rear guard. Bring comfort and peace. Amen
I am a firm believer in the power of prayer and will continue to pray for Cole and all involved in his treatment and care. His bravery and your faith are so strong, and I know that HE will guide you all with healing hands along the way.
Hello Shanda! May God bless you and your family on your cancer journey. I sent a email to your yahoo and edu accounts. Please read it as soon as possible. It is extremely important.
Our thoughts and prayers are with you all as you fight this monster!
Thank you for the update. I am in awe of your courage and giving of yourself and time to keep your Ottawa prayer support team knowledgeable of our prayer direction. I will keep the Faith and Trust that our Lord will continue holding Cole and his family in his hand, (He will ever be present) . Prayers for diagnose and cure for this cancer. I join you in believing that there is a cure and refuse to believe anything else. Our love, support and prayers. I will be willing to do anything to be helpful and uplifting. Love in Christ, Mary Lois Yates
Shanda, sending you strength as you continue to face the difficult road ahead. No parent should have to go through what you are going through. You are an AMAZING mother and the love you have for Cole is shining through.
Your journal was e-mailed to me from a friend. I am so sorry to hear about all that Cole is going through. What a heavy cross you have! He is such a strong boy to have gone through so much in such a short time. I will be praying for Cole and for strength for all of you.