HOPE for Four....

January 27, 2011, Braden and I were sitting in a exam room at CHOP waiting to see Dr. Mosse after scans.

I was pretty sure that we were going to have bad news about his neuroblastoma because they had seen something on his CT scan...

and I saw Dr. Mosse walking into the CT room as we were coming out of the radiology department following his MIBG scan. 

An MIBG scan is a nuclear med scan in which a radioisotope is injected into him and will "light up" on any active neuroblastoma cells.

I can see the MIBG pictures as they build and the pictures looked very different than they had ever looked before.

to me.

"Dr. Mom" ;)

I had found a penny the day before, and I picked it up and put it in my pocket.

And I had rubbed it the entire scan...and told myself to TRUST!

(see Pennies From Heaven... http://deliecehofen.blogspot.com/2013_01_18_archive.html)

Dr. Mosse came into the room and gave Braden a high five and then said, 

"I am really pleased to tell you that Braden's scans look completely normal".

I sat there with my mouth gaping open and said, "I'm going to need you to say that again."

She did.

and then I cried.

We had never heard those words...there had always been something lighting up on his scans.  And this news came just weeks after I had to fight our "oncologist" in Kansas City who told me the therapy was too hard for Braden and we would have to stop.

I told him if we stopped Braden would die...and we were not stopping because the last scan showed things were improving.

It was an ugly meeting and not much good came of it,

except that I got my way.

And then I worried that I could be wrong. There's a lot of guilt choosing therapy for your  child.

It's life and death.

And you have to pick.

It's been three years since that day.

And his neuroblastoma remains in remission despite ALL odds.

TAKE THAT cANCER!

But now Braden is fighting a secondary cancer...MDS, a preleukemia that was actually CAUSED by the treatments he endured to save his life.

Really.

But without those treatments, we wouldn't have heard he showed no evidence of neuroblastoma and he would have died four years ago.

One of the many life/death choices we have had to make over the past 6 years.  It's an impossible position every single time we have to make those choices.

Those treatments actually altered his DNA and now the doctors are very skeptical that Braden can survive the MDS. Our teams in Kansas City (a new oncologist that we love) and in Philly have never seen a child survive treatment induced MDS after neuroblastoma.

Never.

And that is terrifying and horrible.

Braden has chemo shots every night for 7 days, then off for 3 weeks to slow the MDS and give us more time with him.

And his last bone marrow biopsy showed zero MDS cells out of a sample of 1000 cells.

That is amazing!!

BUT...

the one child I know who has achieved this "zero" status with those same chemo shots for 15 months, began showing cells and is now in bone marrow transplant. We pray for her every day.

Which is not good because we are trying to avoid transplant.

Transplant could kill him...or he could live through it with debilitating side effects...

or he could live through it with minimal side effects...

just to have the neuroblastoma come back.

IF we have done what we set out to do, and have taught his own body to recognize neuroblastoma cells and keep them dormant, when he has a transplant and his body becomes all donor cells, he will no longer have that immunity.

and the neuroblastoma comes back.

and he dies.

We have been asked to once again choose how we want our son to die.

Seriously.

How the hell do you do that?

We follow Braden's lead. Braden keeps fighting...so we keep fighting with him.

We keep hoping...and praying...and believing that miracles continue to be possible.

We've seen miracles many times...

We just need one more.

He has another bone marrow biopsy on February 10, that will tell us how things are looking with his MDS.

Celebrate today with us...it's truly a "TAKE THAT cANCER" moment.

And hope and pray for tomorrow.

We know how blessed we are to still have Braden with us, feeling good, growing, loving, and showing us the real meaning of God's grace and love .

HOPE!

"Miracles happen everyday, change your perception of what a miracle is and you'll see them all around you."...Jon BonJovi

Brave...

A few years ago, I found a short story by John Alessi that makes me cry every time I read it.

My heart is constantly saddened watching Braden have to go through all that he endures. 

Autism, 3 rounds of cancer, cataracts, asthma, so many challenges...

and any ONE of those things would be enough for anyone.

No parent wants their child to suffer...

even for one moment, 

let alone his entire life...

and through off of his suffering, Braden has been the most positive, loving, happy, and sweet person I have ever met.

(yup...biased mom but it really is how I feel) :)

As I was searching to make sense of why he had to have so much crapfest in his life, I read this story.

And it gave me a little peace.

Perhaps those that suffer the most,

those that have to go through trials that are too big...

endure them for a reason.

Maybe Alessi is right...maybe brave little souls are gifts from God...

and maybe they do unlock the love in people's hearts...

and through their suffering bring humanity to this world.

That is what Braden and his attitude through his crapfest has done for me.

I hope you enjoy this story 

and that it brings you a little peace as it has me.

"Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Kindness...

Each year since 2008, Santa Claus has appeared at our doorstep ringing our doorbell one night in December.

And there's a huge group of jolly friends with candles lit singing Christmas Carols with him.

6 years...

and counting. :)

And each year I get tears as they sing.

The feeling of being cared for

and hoped for is simply beyond description.

Our friends...

neighbors...

teachers...

....adults....

children...

even some babies...

all coming together to bring joy to our sons.

It's amazing and so heart warming and my favorite night in December...well other than Christmas Eve.

We have always contended that they are our good luck charm.

Last year after the group caroled at our house, we then walked to the homes of two other families in our neighborhood who had family members facing cancer and sang for them.

It was a very cold night and the family at the last house, invited us inside to sing to them.

When we had finished our carols, the lady who was fighting cancer said she had a request...

she asked us to sing "You Are My Sunshine".

There wasn't a dry eye in that house that night.

Both of the ladies we sang to last year earned their angel wings.

What a beautiful gift we were all able to give them last year...I'm sure it is something their families remember those smiles and the collective love and hope from each of us even today.

It truly is an enveloping comfort and warmth that is given by all of those beautiful faces and voices.

This year we continued down the block to the home of another neighbor who is fighting cancer..and whose birthday was yesterday.

We completely surprised her! :) It was PRICELESS!

And then we went to the home of some neighbors who just moved in...I think they liked it....

I don't see a "for sale" sign there today anyway. :)

Doing something kind for someone else doesn't have to cost anything...bringing holiday cheer is free.

And it makes a huge difference for the spirits of the people receiving the gift.

"Kindness in words created confidence. 

Kindness in thinking creates profoundness.

Kindness in giving creates love."

--Lao Tzu

'Tis The Season...

Do something kind for someone during this season of HOPE.

A kind word...a hug...a smile...

All are infectious and all are appreciated.

Kindness is contagious.

And to all of you who have joined us over the years, 

Thank you for six years of kindness to all of you...

and here's hoping for about 60 more years. TAKE THAT cANCER!

You are OUR heroes!

Merry Christmas Everyone!

To Believe...or Not To Believe...

To Believe or Not To Believe...

That is the question...

We just got really good news about Braden.

July 8, our 13th anniversary, we were told that Braden had several weeks to a few months left to live. There was nothing to do. Our teams in Kansas City and Philly had never seen a child survive with treatment induced MDS that had fought neuroblastoma.

MDS is a pre-leukemia that will turn into AML that was caused by the treatments he has had to cure his neuroblastoma.

I posted that on our caringbridge site and a few people reached out who knew two kiddoes in the US who had made it through treatments and had shown no evidence of MDS or neuroblastoma.

I connected our teams with the teams that worked with those kids and they chatted. A decision was made to put Braden on a medication called Azacytadine. Vidaza is the product name. It's a chemo that is injected at three week intervals...3 shots every night for seven nights in a row.

He has been so brave about those shots.

SO brave!! He never cries, he is amazing!!

He has had three rounds of Vidaza and we were preparing for a fourth, but He didn't make counts. So we tried again...and again...and he has still not made counts.

His white blood cells were what was suppressed...they were very low and that can be a sign of progression of the MDS.

We did a bone marrow aspiration so we could have cells to count and see if his disease was progressing and if so, how much.

And we met with our transplant team to discuss what we would do for transplant (the only curative treatment for his MDS...also the treatment that could allow his neuroblastoma to come back due to donor cells that don't have the ability to keep dormant neuroblastoma cells quiet if any are there).

We are fortunate and we do have a bone marrow donor..there was ONE match in the registry...ONE.

I had gone to the store and bought everything I would need to have for 30-60 days which is about how long transplant will take in the hospital.  Locked away in the hospital for that length of time.

I had our carpets cleaned NOW because you can't do it right before you come home from transplant...it could create mold and fungus in the carpet and that could kill him. He is taken back to having the immune system of a fetus after the chemo that is given to him to kill the cancer cells.

And then our basement flooded, destroying the carpet.

Awesome.

You also can't have live plants, root vegetables, go outside without a mask, go in crowds, have guests in your home that have been exposed to sickness....and the list goes on and on and on and on....for 100 days following transplant.

I was ready... I had everything ready to go so when we got the result back and found out the disease was progressing, we could enter the hospital and get started.

I ordered Christmas pajamas, I had Christmas gifts purchased, Christmas cards ready to go, family pictures had been taken...

Everything was ready,

but me.

Transplant could kill him and it will absolutely, positively change his long term health. He WILL have side effects and he will NEVER be the same again...he will have some level of Graft Versus Host Disease... Exactly how he will be impaired is yet to be seen. And if the neuroblastoma comes back...

it's going to be very bad because trying to fight it after his body is weakened from transplant...

not a good prognosis.

We waited for six very long days to get results and yesterday we got them.

I was NOT ready for what we heard.

In August and June when we did his bone marrow tests, 200 cells were sampled and 18% of them showed MDS cells.

They initially sampled 500 cells with this test...zero of those cells were MDS cells.

Not believing that, they sampled 500 more.

Zero of those cells showed MDS.

Zero.

And the result we got back was that Braden's MDS is stable to better.

BETTER???!

I had no idea it could GET better? I don't think that was anyone's hope or goal...I think every person on our medical teams in both KC and Philly were hoping to just slow it down. They never mentioned Vidaza could actually kill the cells!

After asking our oncologist 100 questions, I have learned that the sample could just have been a sample that didn't show any..but there could still be cells there. SO we will have to sample over time and see if it remains zero.

And hope!

I should be thrilled...over the moon...happy beyond belief...

but I'm waiting for the other shoe to drop.

Waiting for the phone call saying, "about that sample..."

"we mixed up the results with someone else..."

"we are really sorry but we made an error in the lab..."

I'm a hopeful pessimist.

I want to believe it, but my guarded momcology heart says "don't fall for it..."

Our oncologist keeps telling me to be happy.

For the record, I have smiled...and then I stop.

I took the boys out for pizza last night to celebrate and I was staring at Braden while he and Zach played. My heart hurt so much because I was so conflicted.

And right then, I heard the words "Just Breathe" come across the sound system.

Faith Hill's song was playing.

I think that was a sign from our angels that I need to "just breathe".

I just started laughing and the boys looked at me like was insane.  Okay...they could be right. ;)

I'm trying to breathe...counts on Monday will tell whether or not his counts are still down. They believe it has likely been a virus that suppressed his white count (he was sick for a few days) and that the Vidaza had a lasting effect in suppressing the counts.

If we get better counts on Monday, I will breathe easier.

If not, I'm likely to ask for a bone marrow biopsy rather than just an aspiration.

The past six years of our cancer battles have led me to believe completely that the power of positive thoughts and prayers can change the world.

I am reminded of Matthew 17:20

..."For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”

I stand in awe of God. And I am grateful beyond words!

TAKE THAT cANCER!!

Gratitude

How many times do we complain or worry or become upset about "stuff" each and every day?

The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.

We all do it...all of us at some point...

Even me!  More often than I care to admit.

I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.

Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.

For whatever reason, they enjoy the drama.

And that, honestly, make me sick...

and frustrated...

and very, very mad.

Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who  "chime" in and defend their inalienable right to have wind chimes that make them happy.

And you can imagine the responses to that and the firestorm that was created on this site...

Again...

Wind chimes!

Yup, this is a real story...not just a hypothetical example....it's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.

Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.

She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.

And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.

You can't fix crazy and selfish...you just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.

And then hope and pray for them that some day, they will have "enough". For my blog about that...visit http://deliecehofen.blogspot.com/2013_03_14_archive.html

Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.

This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.

And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).

Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".

To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.

Not likely that is all going to align.

So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.

We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.

Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds).  Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.

Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.

Victory number one!

His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!

Victory number two!

Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.

That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.

The next day, we would have scans for the neuroblastoma to see if it remained quiet.

I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good news...it's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.

And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.

And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.

Victory #3.

Now we had about 3 hours to "play" before 5:00 when everything closed.

So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.

It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.

I decided that today...we were going in.

We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....

We opened the door and could immediately see into the massive worship space.

And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.

And I simply thanked God.

I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".

And we left.

I didn't even ask Him for clear scans the next day.  In all honesty, I didn't even think about it.

All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.

I just thanked Him.

I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.

And Braden's scans continued to show "no evidence of disease".

Victory #4

A tremendous blessing and gift.

TREMENDOUS....

We still get to move forward...we get a green light for this next round of shots...

and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.

We don't know what the next storm will be...

rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure),  transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....

Everything must align perfectly.

It's going to take a lot of hope, it's going to take a miracle...

But for now...we are just grateful for our blessings.

Each day, we get to choose how we approach life.

We choose detours...

Hope...

Love...

and Gratitude!!!

Wind chimes just don't matter!

Let them go....

And fight to live with a thankful heart for blessings that surround you.

Even in the darkest of storms...

we can find something to be grateful for....

And WE have a billion blessings to be grateful for even in the midst of our dark storm.

Most notably, a NINE year old who leads the charge and a TEN year old we love very much!

TAKE THAT cANCER!!

My friend Christine and me (my hair just started coming in after chemo) with our wind chimes a friend gave us! 

Pain is pain...

So things in our lives have been a little crazy...and sad...and fearful...and worriesome...and all shades of crappy....

Mixed with overwhelming joy and love and happiness...

It's the roller coaster ride of a family who has a child with cANCER.

Up and down and twirly and swirly....then you throw up...then you laugh...

but you always want off the ride.

This is our third time on the ride.

Braden's third cANCER battle.

I didn't sign up for this shit...and I didn't get in the line...

I'm pretty sure I was thrown onto the ride kicking and screaming.

Needless to say, it's been chaotic and overwhelming.

Well, I have had many conversations with my friends in which I've learned that they, too, have had their own roller coaster rides. Filled with their own twirly swirly dips and twists, throwing up, and wanting off.

But they haven't said anything to me.

When I do finally get them to come clean, they apologize profusely and say, "You have SO much going on right now...I didn't want to bother you and I didn't want to make you more sad".

So let's just talk about that because it's sort of an taboo thing to talk about in society. Nobody really knows what to do and how to handle situations like mine.  I've always believed open communication and talking about the elephant in the room is the way to go.

I can't speak for everyone in similar shoes, but this is what I need and want my friends to know! :)

First, NOTHING can make me more sad about my own stuff.  Nothing.  Once again my son has overwhelming odds of dying or surviving only to have devastating side effects which could result in him not having "quality time".

So nothing can EVER make me more sad about that.  I have crossed over into the infinity to the power of infinity, plus one level of sadness.

I'm kicking ASS in the Sadness Olympics!

If there were such a thing.... LOL!

BUT....it doesn't mean that I can't empathize with someone else's sadness. And it doesn't mean I can't be helpful with someone else's "stuff".

I'm not saying I will be helpful...I'm still me and quite often a complete mess and I often insert my foot into my mouth...

(figuratively)

Unless I have had entirely too much tequila...

Then all bets are off.

But I want to try.

I want to be a part of my friends' lives, I want to hear from other cANCER moms, and I want to try to help find resources and help for them too.

It actually helps me to help someone else. It gives me something that I can try to control and result in a better outcome for someone else.

I want to be a part of my friends' lives.

It fills my heart and soul to TRY to help.

So let me.

Many of my friends have apologized for what they are worried, stressed, sad, fearful about because they think what they are going through is not nearly as big as what I'm going through.

My response is always the same...

Anyone who feels the need to quantify sadness, worry, stress, and fear is not thinking. And, frankly, not a very good person.

Pain is pain.

Fear is fear.

Sadness is sadness

Worry is worry.

Heartbreak is heartbreak.

There is absolutely NO need to quantify, no need to measure anyone's pain against someone else's.

So please don't feel the need to quantify and compare.

Pain is pain.

Period!

I do not believe it is disrespectful or insensitive to tell me about your personal crapfest. And, I may cry with you...and that's okay, I would have done that before this cANCER mess so I'll probably do it now.

I feel isolated and shut out and like I'm a bad friend when I am not a part of your lives, even the bad stuff, and even with my crapfest.

So stop making me feel worse about myself by not sharing!! ;)  LOL!!

My heart is big enough to handle your happiness too.  Yes...it really is.  So when you become pregnant, your child reaches a major milestone, you get a new job, you are going to Hawaii...whatever it is... (and those are all made up as I type but if you are going to Hawaii...I want to go in your suitcase please) :)

I can take it!

I can actually be happy for you, even on my really crappy days.  I WANT to be happy for you and I want to celebrate with you. I need things to smile about also!

Just treat me like you did before the new diagnosis. I'm still me. I have another round on the roller coaster from hell but being friends, sharing your lives...gives me a brief moment on the roller coaster of straight, slow track where I can focus on something other than when the next big dip is coming that is going to make me throw up.

All of us have friends who go through hard times. The best advice is ASK your friend how they want to be treated...do they want to hear your stuff or not...

and for those of you who didn't ask me, but heard it anyway...now you know! :)

My friends are my family. I love you all and we will get through my roller coaster and your roller coasters by being there for each other.

It's what friendship is all about.

Love you!
Deliece

First day...

On Thursday, Braden went to his first day of third grade.

TAKE THAT cANCER!!

He was SO very happy to see all of his friends again. He has gone to school with most of these kiddoes since kindergarten and they are just AMAZING!!

I once wrote about how one day we were at the park and a little girl who didn't know him asked her mom what was wrong with Braden when he spoke to her.

Because of his autism, his language is quite delayed (but I still think he's awfully sweet and cute).

I was very taken back by that reaction because the kids he goes to school with are the exact opposite of that. They embrace him, love him, and help take care of him.

His classmates and friends go out of their way to include him in things and to help cue him to participate. I really cannot adequately describe to you the admiration I have for each of these children.

Many people could learn a great deal from them. They care and love openly and completely just because they do...not because anyone rewards them for doing so, not because they are being paid to do it, not because they are getting any recognition...just because they care.

Ummm...that's pretty amazing, remember they are only 8 years old...and his preschool peers did the same when they were 3.

Yup...we could ALL learn a lot from them!

His classmates and friends are simply the kind of people I want to be like.  Selfless, kind, and beautifully caring.  Their families are the same way...seems like the apples don't fall far from the trees. :)

Then there are the teachers.

They ROCK!

He has some very special grown ups that he loves more than words can explain at that school. Each and every teacher he has ever had is now a part of his heart. He remembers each of them and comes running into their arms every single time he seems them. And he talks about his Principal every day too! And the secretaries (and the turtles in the office) and the custodian...adores them all!

He always has an aide with him during the day and those ladies are so special to us. He adores them as much as he loves us. They are family.  He asks for them every single day. He is absolutely, positively in love with them.  He has two new ladies joining his "family" this year and we are so excited to have them aboard as well!

Sooooo....when it was time to go back to school for the first day, he was excited and happy. He was pretty much giggling the entire morning while listing each and every person he was going to hug.

He could not have been happier when he walked into that building. You could FEEL he love he has for everyone in that school.

And..it is contagious.


While it was one of Braden's "best days ever", it was a hard day for mom.  I was SO very happy to see him beaming and exploding with excitement for his first day of school. I had tears when he saw two of his best friends and hugged them so hard I was afraid he might choke them! :)

I was so happy for him...

So grateful for the day...

Humbled that he GOT a first day of third grade...

In awe of God's grace for this gift...

And so very sad that it might be his last first day ever.

Remember, I'm a hopeful realist. I don't kid myself about what his cancer brings and I understand the reality, odds, and future we are all facing, but I am following Braden's lead and trying to just keep smiling.

He's still fighting...We are still fighting...we haven't given up and we do believe in miracles...

Right now you would have NO idea anything was wrong with him...other than he gets tired quicker thanks to the chemo.

That is no small gift. It is HUGE!!! We are still getting good time.

The mds had not progressed before he began his shots of chemo...that is the biggest blessing ever!! We have HOPE that the shots can keep it slowed down and buy us more quality time before he has to have a bone marrow transplant with donor cells.

That is frightening...it may not work, he may die during transplant, he may have horrific long term damage/effects from the chemo used for transplant when so many of his body systems are already compromised due to 5.5 years of treatment, or the neuroblastoma may come back if his OWN cells (which we will kill off) have developed an immune system that is keeping dormant cells quiet (and then we are in BIG trouble with the neuroblastoma)...

It's not an ideal situation with MANY bad things that could happen...

BUT...

It might work.

And it could CURE him once again.

That was not what we were originally told...no hope is what we were originally told, but our Doctors kept digging and researching and fighting.

And, yet again, we have been given a small glimmer of hope in what was a completely dark tunnel.

I cannot even wrap my head around how tremendous this blessing really is...

It's a glimmer...but WE HAVE A GLIMMER!!!

Thank you Lord!!

We are going to need another miracle.

It's that simple, it is going to take a miracle if he is going to survive to see his first day of fourth grade.

AND...

I believe in miracles!

Because I live with one.  Four years ago, they told us there was no known cure for his relapsing neuroblastoma but he's been in a second remission for 2.5 years.

So I managed to hold my tears back on Thursday...barely...and I had to make a quick, rude, and embarassing exit to get out of the school before I lost it, but I did it. Mostly. A few tears may have escaped...

cANCER didn't get that first.

Braden did.

We did.

His beautiful friends did.

His teachers, aides, and Principal did.

TAKE THAT cANCER!!!

He WON!!!

and cANCER lost!

A Year Of HOPE...

A few years ago, my friends Jenny and Vernet were over at my house for a foundation meeting about our first Hope Gala.

Vernet is the wife of then Director Of Pro Personnel, Ray Farmer for the Kansas City Chiefs. Ray is now the Assistant General Manager of the Cleveland Browns. AMAZING family and wonderful people!

Well...Jenny (who is equally amazing) told Vernet that her dad, Paul Bennett, had thought of doing a calendar with 12 Kansas City kids fighting cancer and 12 Chiefs Players...and she wondered if Vernet thought we could do something like that.

Vernet is fearless...and has limitless positivity and energy and she said, "oh yea...we can do that!"

Well, a few months later, we had a calendar with 12 local kids and 12 KC Chiefs players...starting players. The Chiefs were unable to commit as an organization but they said it was fine if we did it with their players.  And we did.  Thanks to Vernet and Yolanda Miles-Waters (Brian Waters wife) who reached out to their friends, and their friends asked their hubbies to do it.  Everyone graciously said yes! INCREDIBLE!

Since then, we have been working directly with the Kansas City professional Sports teams and have been completely overwhelmed by their generosity and good will for our children with cancer.

We sell the calendars for $10 each and all proceeds go directly to the foundation to raise awareness and fund our $100,000 research grants to find targeted treatments for our children with cancer.

This year, we are doing two calendars for the first time.  Sporting KC, our local soccer organization, has a particular interest in helping people with cancer, especially our children! We shot that calendar at Sporting Park earlier in the year and it was just wonderful. Absolutely UNREAL!!

Yesterday, we shot our calendar with the KC Royals at Kauffman Stadium. And again, it was unreal!!

Twelve kiddoes, Garrett, Olivia, Ava, Claire, Tianna, Cade, Braden, Gabriel, Trey, Lexis, Stewart, and Lauren were paired with twelve equally amazing players Moustakas, Butler, Hosmer, Gordon, Escobar, Dyson, Collins, Smith, Crow, Guthrie, and Holland.

The photos are absolutely magical thanks to DeCloud Studios and two photographers from the KC Royals.

Jenny Weber from DeCloud Studios who has designed our calendars since the beginning has outdone herself this year. She had a 24 hour deadline from the time the photo shoot ended until she submits it to the printer to have it in hand for the release of the calendars during a Royals Game on September 7. She has pulled an all-nighter to make it happen. She really is incredibly talented but so very caring. It is very obvious that Jenny and the staff at DeCloud Studios cares about our kids. That is certainly evidenced by her willingness to work 24 hours straight on this to have it ready on time! AMAZING!!!

Braden was able to make this photo shoot and he is traditionally on the cover of the calendar. I won't lie. It was pretty tough to do this photo shoot because I fully realize it is likely his last.  It was very hard and there were a few moments when I had to go in the bathroom to have a cry and then return.

I usually spend a lot more time with the other families and get a chance to visit with them. I didn't get a chance because Kauffman Stadium is HUGE and we were spread out and I wanted to make sure I was at Braden's photo shoot...sometimes I miss it.  I didn't like missing those kiddoes but I did get a chance to at least say hi to everyone! Those kids were absolutely amazing and soooo cute!! We are so lucky to know so many wonderful people!!

We had no idea who the players would be and which kiddoes they would be paired with until the morning of the photo shoot.

Braden was paired with Billy Butler, our designated hitter, and it was SOOO much fun!! He was SUCH a great guy and Braden had a blast with him.  We have lots of pictures from my phone! :)

And as the afternoon went on, Braden got to meet several other players...Hosmer (who is on his Royals shirt), Moose, and Escobar (who I hear was VERY sweet to him and even his mom and wife came over to meet him....WOW).

And B got to hang out with his ladies...these are some of the most important people in his life!! :)  And he gave them all kisses! :)

We had planned for Braden to be on the cover with....get ready for it...GEORGE BRETT!! Yes...THE George Brett.  Mr. Brett had agreed to do the front cover with Braden and the back cover with all of the heroes.

HOLY MOLY!!!

Braden has no idea who George Brett is...but we all did. :)  George Brett is one of Brian's childhood heroes and Brian was pretty excited to meet him. They got to talk for quite a bit. When Mr. Brett asked him if he was ready to go take pictures with him, Braden said, "nope!" (he's not a fan of the whole picture taking thing...all he wanted to do was go play golf at the Little K) ;)

We walked out to centerfield to take the photos for the cover and the whole way, Mr. Brett was talking to Braden and playing with him. Once out there, he helped Braden learn the right batting stance (are you even serious...BEST BATTING COACH EVER!!)

And Sluggerr came out too.  If you aren't a Royals fan, that's our mascot.

Braden LOVES Sluggerr!!

Well...Braden is doing his stance with George Brett and he sees Sluggerr and yells, "SLUGGERR!! I WANT TO GIVE A HUG!!!!!!"

He didn't run away into his arms but I was worried...I figure it's not great to ditch George Brett for Sluggerr...BUT I was wrong...

Mr. Brett stopped and took Braden OVER to Sluggerr to give him a hug.

NO WAYYYYYY!!!

How cool is that??

He was just so very sweet with Braden at every turn and Braden clearly liked him. Braden doesn't fake it...if he isn't into you, he isn't into you. But...we was certainly into George Brett!! :)  Okay and Billy and Hos and Moose and Escobar....  (still pinching myself)

It was a priceless day but no picture was more priceless than this one.

To me, it screams "TAKE THAT cANCER" because no matter WHAT happens in the future...cANCER didn't get today and it didn't get this precious memory.

Here are few more pictures from the day...it was absolutely the most incredible experience EVER!!

TAKE THAT cANCER!! 

YOU LOSE AND WE WIN!!!!!

Check out the Crown! :)

Courtesy of the Royals

The whole group...BRAVE, TOUGH Heroes with George Brett

Mr. Escobar, who gave his hat to his hero Tianna...how cool is that?

Billy Butler signig a baseball for Braden

Sluggerr with Braden and his buddy Cade (who went through treatment same time as B)

HOSMER!! :)

Umm...cool!! :)

With Billy Butler

This is our hero, Garret with Moose...I just love this pic! 

Laughing with George Brett!

Bear Hug for Billy Butler!

Brian talking to Mr. Brett...so cool!!

It was an amazing day thanks to the KC Royals and Thirteen AMAZING, KIND, and GENEROUS players!! 

They gave our families something cANCER can never take away...a detour with memories for generations!!

TAKE THAT cANCER!

(And calendars will be available on September 7 on our website www.BradensHope.org and at the Team Store at Kauffman Stadium for $10 each. All proceeds to raise awareness for childhood cancer and fund our $100,000 research grants for targeted treatments of childhood cancer to give our children hope for a future.)