Tuesday, July 9, 2013


If you haven't heard, we were told that Braden has a pre-leukemia (MDS) and it is a result of his treatments. They believe it was either the MIBG or the Temodar chemotherapy he had for 8 months.

And the odds of survival are really horrible. I mean really horrible.

We were told Braden had weeks to a few months to live.

So we are searching the world right now for anything that could help him.

We have known that we were likely trading long term for short term when we had to do these treatments to try to prolong his life.  And we got 3 years we were told we wouldn't.

It doesn't make this news any easier.

We have been living for this moment for 6 years. We have detoured at every opportunity, we have completely soaked in each minute and made memories cANCER can never take away from us.

I have memorized my son's face, fingers, toes, eyelashes, everything because I have feared the day when I would say goodbye to him and never see him again.

We have been optimistic and hopeful realists.

And...it doesn't make this any easier.

I don't want him to die.

And I am completely, and utterly not in control of this.

To be very clear, I do NOT believe that this is God's work or God's will...I don't.

The God I believe in does NOT give children cancer and watch them suffer and die.  I will never believe that and I will refute any discussions/suggestions of "This is God's will" and "Only the good die young"....not helpful statements and I believe they are wrong.  The God I believe in is crying right now with us.

And again...it doesn't make this much easier but it does cut the "why" question out for me.

Braden feels fine right now so we are hitting the detour trail like crazy. We went to the water park today and have two more detours planned for tomorrow.

We even stopped at an arcade on the way from the hospital after we got the diagnoses because he wanted to play Skee Ball.

We haven't given up yet...we are still searching, but we are realists.

And all I can think about is things like the new shoes I bought him a week ago that were a little bit too big.

It didn't worry me at all because I figured he would grow into them...

And his birthday, September 9...will he see the age of 9?


I put our Christmas stockings away every year by kissing Braden's, putting it on top of the pile, and hoping he will still be here the following year when I pull them out again.

Am I going to be able to even look at that box?

Zach's hand-me-down winter clothes that I had already put in Braden's closet when I cleared things out for summer.

I'm sort of lost right now.

He is full of life! We are so blessed that he is still "Braden" right now!

I watched him at the water park today running around, turning levers to make different things shoot water, and the entire time he was smiling and laughing.

I cried as I watched him because there is SO much joy and life in this child.

He doesn't have clue he is supposed to die soon.

What a blessing!!  Thank you autism.

But we do, Zach does, and so do all of our friends, who are truly our family.

We have been absolutely inundated with messages, calls, texts, emails, etc from thousands of people from all over the world who are hoping and praying with us.

The amount of love and kindness people have shown our family is absolutely humbling. Seriously. It's remarkable.

I read every message and I cherish them. I just can't respond. There are so many that it's impossible and my heart just cannot do it.

I'm still in the stage of putting up my fortress because I can't deal with all the collective sadness when I'm still identifying my own.  I will get there, but I'm very slow at this so please don't take it personally. I will sound like a bad date but "Really...it's not you, it's me!" :)

We still have time for more memories and we will continue to create them and wait for more information that could help prolong his life.  That's a gigantic blessing.


We don't know how much but we know we have some which is a lot more than many people get with death.

I think about our friends who have had to say goodbye to their babies. I think about them every day. And my heart aches for them.

No parent should have to do this with their child.

It is NOT right, it is not fair and it is not okay.

I want to hold him every minute, I want to kiss him every second.

I want to smell his hair, and tickle him until he gets the hiccups.

I want to tell him I love him a billion times a day and hear it from him that many as well.

I want to watch him run and play and have fun like any little boy.

And I want to find cancer in a dark alley....

It threatens to kill him again.  STOP IT cANCER!

Leave our son ALONE!!!!

But no matter how much I wish it and how much I cry and how loudly I scream...I cannot change the fact that he has this disease in a new form and things looks scarier than they ever have before.


For now...I try to put all of the "realist" things in the back of my mind and spend my time cherishing every minute, continuing to fight, making memories, living, loving...

And hoping.

We will ALWAYS hope.

Please hope with us!

We have so many blessings...the greatest are love, friends, faith, and hope!

Now is not the time to give in, now is the time to pray or whatever you believe in harder than you have EVER done before.




  1. I love your little boy and have followed this battle of his for years. You, him and your family have touched my heart in ways you would not think possible. Perhaps it is because I have an 8 year-old of my own and cannot imagine the pain you guys must be feeling at this time. My heart is breaking reading this. I will keep praying as strong as I've ever prayed before. ♥♥♥♥

  2. praying with vigor for your sweet one. I can't, CAN'T imagine the pay that goes with this. We have lost a couple little ones to mis-carriage and my heart just breaks - but I can't begin to imagine this loss. We will pray fervently for all of you.

    I'm sure you've seen this on the internet by now, but there was a study done with the dead HIV virus that seemed to be working for one family - any chance this might be an option for you?
    God Bless all of you.

  3. Dear mom of Braden,
    My heart hurts for you and tears of sorrow are running down my face praying for your son and praying for you. Mother to Mother I send you my love , strengh, my faith to help pull you through.
    Kathy Summers

  4. You have a beautiful son and a beautiful outlook on life. "c" cannot take any of that from you. God does love your son and I believe He is weeping too. Keep telling your story for everyone that needs your positive spirit of hope & unfailing love.

  5. Words cannot express feelings right now. You know that. The rest of us are learning. You have my prayers, my hope, my belief. And still more prayers.

  6. Praying for all of you. Praying for wisdom for his doctors to take a chance and try something new that will work for Braden. Praying that you have lots of new detours and memories

  7. This is the first time I've been to your blog (a couple of friends shared this post on FB this morning), and I am in awe at your strength, hope and realness. I will be praying for your sweet boy, and for you and the rest of your family!

  8. Dear Deliece
    I am praying for you and your family. I have been a volunteer for The Greater Kansas City Camp Quality a camp for children with cancer and their siblings. I have seen the devasting effects cancer has on these kids but I have witnessd amazing courage, strength, from these kids, In the 20 yrs I have done this camp I have been blessd to know many of these families who fight so hard for their child and never give up. I admire your strength and courage and your many words of wisdom when I know you are aching on the inside to read your words of inspiration your faith is outstanding the last 2yrs I have bought the calendars from Bradens Hope and I loved them. Some of our campers from Camp Quality were in them. Thank you for sharing your story of hope and courage and will continue to pray for you daily. YOU are an inspiration to all May God Bless you and your family!

    1. Thank you so much for all you do for our kids joyce!! Hugs!

  9. I am praying for you and your family. I CAN NOT imagine going through what you are going through. I saw you at the pool and I knew if I came up and just to give you a hug and tell you that I am thinking of your family I would cry....and you were there enjoying your precious time with your son. hugs are being sent your way. Continue making those wonderful memories that you will forever cherish.

    1. Hello!! You totally could have come over...it's okay to cry, I do it a lot!! ;) Thank you for those prayers!!

  10. Thinking of you and your family. I am so sorry you've been dealt such a crappy hand. I will pray for as much time as possible with your sweet boy.

  11. We are praying, hoping and believing. Our arms are surrounding you with love and hugs and asking God to do the same. You do what you need to do to take care of yourself and your family. We are all here for you right now and we don't expect you to be here for us in any way. No responses are necessary because we all know the focus needs to be on you and your family and your ability to cope with this horrible situation. We love you!

  12. I, too, heard about your blog from a FB post. Sister, know that you and your family are being covered in prayer. I am so very sorry that you are going through all this. I have no words, just prayers and tears for you all. May God hold you in His strong right hand as you endure this incredible trial. And may you feel the comfort of our Heavenly Father at the times you need it the most.
    Lisa in CA

  13. I am praying for Braden and your family right now. I wanted to pass on some information. If you haven't looked into it, you might call the National Cancer Institute in Bethesda, Maryland. They worked miracles for my brother that had brain cancer. They run a large amount of clinical trials and they treated my brother for free.
    I pray you witness a miracle with your son. Praying for you and spreading the word to others.

  14. I just noticed your website on Facebook a few days ago. You have stated what you do not want to hear and I understand and respect that. So, I will just say that my husband and I will pray for you and your son, Braden. We have a grandson, Tommy, who will turn 9 on July 13. He is a precious, healthy little boy and I realize we and our daughter and family have a lot to be thankful for. I do believe our God can and does perform miracles and will pray he will see fit to perform a miracle for Braden. God bless you!

  15. My heart breaks for you and your family. I'm praying for a miracle for Braden and your family. God bless you!

  16. I remember when you hired me 7 years ago, you had the adorable picture of your little boys in your office. I believe they were in cowboy hats...maybe jeans and boots. I have been in many offices...but that precious picture has always stuck in my mind. I never knew I would end up teaching at Morse and having the chance to get know them both a bit better. You have the most beautiful family, both inside and out. I believe in the power of prayer....I have seen it's work. I agree with everything you say about God when it comes to kiddos....and I too hate the feeling of being powerless. Please know that my entire family is praying for you, as well as several entire church congregations in west Kansas. I wish I could do more. Your outlook on life is inspiring to me, truly it is. I hug my babies an extra few seconds longer at night for Braden and Zach...and also for you. Thoughts, Prayers, and Hope coming your way!

    1. Oh Ellen!! I remember hiring you!! :) I was so happy and I was simply thrilled when you moved to Morse! So glad to have you as a part of our boys lives. MANY big hugs and much appreciation!! XOXOXO!

  17. Many prayers coming your way for Braden and your whole family.

  18. Oh Delice! My heart is breaking for you! Prayers are being lifted up for you all!

    1. THank you Lisa...you guys are in our prayers daily!! Hugs!