#TakingItBack2015

I've been quiet for a bit and haven't blogged.

To be honest, I've been trying to figure my life out.

For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.

We know we are never out of the woods, we know that both of our teams in KC and Philly have never seen a child with secondary MDS post relapsed neuroblastoma survive for 5 years, but as of right now... for today...

Braden is in remission from both cancers....

all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.

My life has been completely consumed by fighting cancer since December 28, 2007.

I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.

No one should ever hear the words, "No Known Cure".

Period.

And for the first time in nearly 8 years, we are not in active treatment.

Seriously.

He's been actively fighting cancer for that long.

And now I find myself at a bit of a loss; trying to figure out what our new normal is and how I can trust it might stay this way for a bit.

Since Braden's initial diagnosis, I have felt like Wile E. Coyote, waiting for the anvil to drop yet again and our world to once more be destroyed. It happened so many times that eventually you actually do begin to act like that crazy coyote and you just hold up a sign that says, "Not Again" while you fall into the canyon of the next crapfest.

Braden's Hope For Childhood Cancer, our non profit, has been my sanity. Through it my friends and I have been able to help hundreds of children and bring hope to them through research and awareness.

It has kept me positive and given me a purpose and made me feel like even if we didn't beat Braden's cancer, we might be able to beat it for another family.

And there is a great deal of peace in that.

But now that things have "normalized" a bit at home, I find myself wanting a life for me again.  Before all of this crapfest, I had a life. I had a career that I loved very much. I actually didn't realize how much of my own self identity and self worth was wrapped up into my career, but it was.

And once that was gone, I had a hole and an emptiness. I didn't leave it voluntarily, it was ripped from me by cANCER.

I miss it. And I loathe cANCER for taking it from me.

Yet at the same time, I am very fulfilled in my role as mom and President of Braden's Hope. However, I yearn for my own self identity. I know, that sounds contradictory and a little crazy; I'm not explaining it very well...

I want back what cANCER stole from me. I want my life back.

Now that Braden is one year post transplant, and the vast majority of relapses occur in the first 12 months, I have my sea legs back again. I'm scared to stand on them because they always seem to get cut off when I try, but I'm going to take my mom's advice from when I was a little girl and was showing quarter horses.

"If you get bucked off, you get right back up and on that saddle and show your horse that you are in control and you are not afraid, even if you are. If he knows you are scared, he will always be in control and he will just keep bucking you off..."

Well I am afraid. I'm terrified to try to take my life back and rebuild it from scratch because the anvil always seems to fall again and it's absolutely devastating when you just climb out of the sludge only to be kicked back into it.

But I am going to get back up on the saddle again.

On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!

So now, I'm taking my life back and cANCER doesn't get to be in control any longer. It has taken quite enough from me and I am over it.

Momma is back, with new hope and I am now including the word, "future" in my vocabulary. That's a pretty big deal and something I never thought I would do again in my lifetime.

So stay tuned for all of continued #TakeThatcANCER moments and new  #TakingItBack2015 moments.

Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;)

We are taking it back and cANCER is now powerless.

TAKE THAT cANCER!!

For Your Good...

I still remember it like it was yesterday.

I had just started chemotherapy for my breast cancer when I got a card in the mail telling me that I could have as many massages as I wanted (for free) to help me be comfortable during chemotherapy.

There was apparently research out there that said they had found that when cancer patients felt more comfortable and had a chance to relax and take care of themselves, the chemotherapy process was easier.

I stood there in disbelief as I read the letter that was sent to me about my unlimited massage offer to help me through my treatment process.

My best friend was at my house and I showed it to her. She read my facial reaction and asked, "What do you think about that?"

I had to consider how to respond.

My then five year old had just been diagnosed with a relapse of his neuroblastoma cancer.

And there was no known cure.

We were sure his fifth birthday was going to be his last.

He had started treatments when I found the lump in my breast.

I knew right away what that lump was, and to be very honest, I really didn't care about my own cancer.

My only concern was my son, who by all physician reports, was dying.

So as I read that card, I was mad.

REALLY mad.

You see, at that time, the clinic at our hospital was so crowded that the chair he sat in for chemo was my lap...

and my lap sat upon on the dirty floor because there were not enough chairs for the kids to sit on.

Seriously!

One time, Braden was playing as he was hooked up to his chemo and a little girl (who was also trying to play while hooked up to her chemo) tripped over his line and de-accessed him enough that the chemo was no longer going into his port, just under his skin forming a large lump.

A very dangerous thing.

My five year old was dying and couldn't even get a chair, but I was offered unlimited massages.

That was the moment that threw me into action.

It was the moment that made me decide that we needed to form a 501(c)(3) to fund research for children with cancer...

so our kids could have a chance for a future.

We did just that and this past weekend, we had our third annual Hope Gala for Braden's Hope For Childhood Cancer.  Over 800 were in attendance and we raised about  $176,000 to fund awareness and research targeted therapies to shut down the activators of childhood cancers.

And I had chills.

I went to church on Sunday night and one of the songs we sang had the words from Romans 8:28.

God makes ALL things...not the things we choose to have in our lives....work together for our good.

we certainly didn't choose this crapfest, but ALL things are working together for "our" good.

"Our" good is the good of all children with cancer.

I don't believe God gave us this crapfest...I think that came from the "other guy" but I do believe God holds our hands through every bad moment and that He wants us to use all things for something positive.

During this entire crapfest, I have experienced a lot of positivity and witnessed more acts of selflessness and compassion than I could ever list.

I been blessed by friendships and support from the most amazing people in the entire universe and many of them have joined with us to fight to bring HOPE to our children with cANCER.

And most of them are not people who have children with cancer. 

They are just people who care and act to fill a need.

This crapfest has brought more beauty and grace into my life than I could have ever imagined.

Yes, I wish it had never happened, I wish our son didn't have to go through everything he has had to endure.

But the simple truth is that I cannot change our circumstances. 

But I CAN choose who I react and I can control what I choose how I act as a result.  

So thank you cANCER...thank you for creating the crapfest that led us to...

beautiful selfless people surrounding us...

true friendships...

perspective...

mercy...

kindness...

love...

gratitude for every moment...

...and HOPE.

Braden just turned 10, even after battling a secondary cancer we were told he would not survive a year ago.

TAKE THAT cANCER!!

HOPE wins because 

ALL things work together for our good...

if we trust, believe, and have faith that no matter what the answer to our wants and needs, the answers  will work together for our good.

We have HOPE that Braden will live a long life and right now that is enough.

Actually, it is more than enough....

it's everything.

Zach...

The day our son Zach was born was...well a huge celebration.

Obviously.  Sure, parents celebrate the birth of their children but for us, it was extra special.

Before Zach was born, we had a daughter, Miranda Grace, who died in my arms 15 hours after she was born due to underdeveloped lungs after a complicated pregnancy and bed rest for 2.5 months.

We tried again to have a child and had a miscarriage.

So we picked ourselves up and tried another time. On April 3, 2004, Zachary Dean Hofen entered the world...began crying...

and he hasn't stopped making noise since. :)

We were so very happy. Life was good.

Like most parents, we wondered what Zach would become...

achieve...

and dream of.

What would his dreams lead him to become...

Would he be ornery....

And if so, would we be able to catch him at it....

 

Maybe he would be a water boy....

Or a pilot....

Or perhaps he would be a famous jet ski dude...

Professional fall leaf taster?...

Santa's co-pilot?...

We had no idea but the one thing we knew was whatever Zach chose to be, we would always be there, holding his hands, and encouraging him every step.

But the one role he never saw coming, was the role of big brother.

This new little guy certainly rocked his world...what was with this new "sharing my parents" thing? 

What happened to "all eyes on me because I'm so cute" way of life?

And what was with all the crying, stinky diapers, and noise at all hours of the day?

This brother thing seemed a little "sketchy" but Zach earned the title of "Best Big Brother" quickly.

And then his baby brother, Braden, got cancer. 

And Zach became a very grown up 4 year old overnight. His family was split into two locations, mom and Braden lived at the hospital and dad and Zach lived at home....

for over a year. 

Zach visited the hospital and we played. But it wasn't the same as living together.

Everyone's world changed overnight with that diagnosis. And Braden has been fighting cancer continuously for 6.5 years

And mom got cancer too so both his mom and brother fought cancer together.

Zach's live changed once again...and he became more and more aware that life isn't a guarantee.

He had to learn lessons of life and death, fear and uncertainty, and brutal realities no one should have to deal with before the age of 7.

He also learned how awesome people are and how kind they can be in your darkest hour.

He learned about God and His grace and mercy.

And he learned about courage, fight, and HOPE!

Zach continued to grow older while continuing to have a heart of kindness and love.

And he became a Chef...

A candle blower-outer...

A giver of smiles...

A patient brother...

An explorer...

A comedian...

Handsome....

Sweet....

An artist...

A friend...

A military hopeful...

A wrestler...

A drummer and trombone player...

A great snowball target...

And three months ago, at the age of 10, he became a bone marrow donor.    

                                                     

To try to save his little brother's life.

There was no other match in the entire world. Zach was the only one...and he was a perfect match.

Without Zach's bone marrow donation, Braden would have died in a very short time.

So Zach went through surgery to have his bone marrow extracted and then transfused into his brother.

Knowing full well that his cells could save Braden's life...

....or they might not.

That's a lot for a ten year old to carry on his shoulders.

After his cells were blessed by the Pastor in the room, Zach said, "Mom, this wasn't much fun but I would do it again."

And as the nurse transfused Zach's cells into Braden's body, the tubing miraculously formed the shape of a heart...

Zach didn't just donate his bone marrow.

He donated his love...

and brotherly HOPE.

Zach is a pretty amazing boy and I am blessed to be his mom.

I thank God for this little boy every single day.

And I learn from him....every single day.

I learn what LOVE really means.

I learn what HOPE really means.

And I learn that DREAMS take many different forms. 

It's not just about what title you will be called...what caption will be on your pictures.

It's about what caption your heart wields. 

What your heart shows the world about how to live life by putting other's before yourself....about taking risks to try to save others.

Zach is eleven now. 

I wonder how many more powerful lesson this young man has to teach me in the next 11.

I can't wait to find out.

We love you Zach!

Normal...

When our son, Braden, was 8 months old, he was playing with one of those shape toy thingies. You put the correct shape in the correct hole. This one was musical and had a big center hole that had a reflective sticker in the bottom of it.

Braden was sitting in the center of our family room floor and dropping throwing the pieces into the center hole in a very aggressive and focused manner. I as watched with my 20+ year educator eye, I began to freak out.

I tried showing him what he was supposed to do, even did it hand-over-hand and he got it!

And then he immediately returned to his repetitive action. I could see that what he was doing was patterned and stimulating behavior.

And I knew.

I made some calls, and some evaluations done and although he wasn't old enough for us to make an official diagnosis, we began treating it like what I believed he had...

autism.

My heart broke. Our son was a child with autism and life as we had dreamed for him was not going to be a reality.  Even with five therapies a week and my husband, me and our sitter working with all day and evening we would not be able to change that fact.

He wasn't going to be able to have a "normal" future.

My worry was that he wouldn't be independent, he would never drive a car, get married, have children...all of the things we all assume will happen as a part of the normal growing up process.

I remember having coffee with a friend who had a son on the spectrum and explaining how I just wanted him to be able to play baseball with his brother in the yard like other children.

I just wanted things to be normal.

Then Braden was diagnosed with cancer and has been fighting for 6.5 years. It turns out the autism has been a blessing because he has no idea what "normal" is...

he doesn't know everyone doesn't feel horrible all the time, he doesn't know everyone doesn't go bald with treatments, he doesn't know everyone doesn't live a large percentage of their lives in hospitals hooked up to tubes and bags of chemo, he doesn't know everyone doesn't get shots all the time...

He thinks all those things ARE normal. And because of that...he is the happiest boy in the entire world even with his crappy circumstances. It's all about perspective.

The biggest benefit is that because of his autism, he doesn't know he is supposed to die. He doesn't have to be afraid because he doesn't even know what cancer is or that he is sick. He doesn't have to be afraid.

I'm grateful for autism now.

GRATEFUL!

And I'm not trying to "train" him out of his autism anymore.

This "different normal" is a gift. And this young man has taught thousands of people about HOPE and FAITH and BRAVERY and FIGHT!

But....my mommy heart still wants the normal things for Braden.

Last night after dinner, we went outside to play basketball...Braden's favorite thing in the entire world!

I noticed some bushes that were very overgrown so I got out the clippers and snuck two feet away from him to clip a few branches. Having a child with autism is like have a two year old all the time, you cannot leave them because you don't know what they will get into or where they will disappear to. There is no "me" time because you are always on watch and that makes things like simply trimming bushes two feet away from him difficult to do.

I could hear the basketball bouncing so I knew we were good...for a couple of minutes anyway.

Then I heard two basketballs...his brother, Zach who is 11, joined him.

Then I heard, "Braden, let's play baseball!"

Rats...I was going to have to stop trimming so I could help Braden play baseball.

So I hurried, I clipped fast and furiously so I could get as much done as possible while they got the wiffle balls and bats out.

And then it happened...the sound of Zach pitching and Braden hitting! Zach was telling Braden "Good hit Braden" and Braden was giggling.

I came around the corner and this is what I saw...

I gasped...took a picture and just stood and smiled.

It was happening....the dream I told my friend I wanted and was so sad we wouldn't get.

My boys playing baseball in the yard by themselves.

Holy smokes!!

As I watched smiling with tears running down my cheeks, they completely ignored me and switched places.

WHAT?

And they were sharing and taking turns voluntarily?

I didn't want anyone to pinch me because if I was asleep I did NOT want to be awakened.

And they kept playing for a long time!

Aren't they sweet and cute? (proud momma here)

I was able to go back to trimming the bushes, collecting the branches, and putting them in lawn sacks.

And that friends...has never happened in 9.5 years!

I went in the garage to put away the clippers and heard a loud scream and crying.

I freaked out!

Braden is only 66 days out of a bone marrow transplant. Zach was perfectly matched his bone marrow donor.

I SPRINTED outside and saw Braden crouched down on the drive way grabbing his eye. Zach was standing beside him trying to comfort him and crying too explaining that he had accidentally hit the wiffle ball into Braden's eye.

It left a mark.

A big, beautiful, red, swollen mark...

...that was an injury from playing baseball with his brother.

It wasn't from cancer.

It wasn't from the autism and not being safely supervised.

It was from playing baseball like every other kid.

It was "normal".

NORMAL!

That crazy red, swollen eye was a gift.

And they kept playing baseball. And  his eye was all better in about 10 minutes.

My dream came true! 

Maybe...just maybe...nothing is impossible...

HOPE!

Unforgettable...

On Friday, we got a call from Sporting KC asking if Braden would come to their awards banquet and present the Humanitarian of the Year Award to Aurelien Collin. 

He would need to stand on a stage with lights shining at him in front of a crowd of people and hand an award to Aurelien with Cliff Illig (owner of SKC) and Coach Vermes. And he would need to "dress up".

Now that request hit every single "no way" button for Braden. He has autism and I wasn't sure he was going to have anything to do with this, but I remembered the night he was honored in the Victory Suite and he hopped up and waved to everyone in the stadium like he was the Pope. It was PRECIOUS and I was so proud of him!! The crowd ROARED but he continued to have a blast!!

So I talked to Brian and we figured we would try it. 

A once in a lifetime detour!  And a major challenge for his autism.

It was on the field at the stadium and it was beautiful! A little chilly for Braden even with the heaters, so we stayed inside and played until award time but when it was time, we went outside.

He wore jeans (which is a major victory) and a button down shirt (another, "you have to be kidding me...he's really doing this moment")! You couldn't see his shirt because it was chilly enough we had him wear his coat on stage but he did it!! BIGGEST BOY!!  AND...he didn't even fuss...he was excited to wear his jeans!!! 

WHAT???  

SO not what usually happens, tears and "I not" fixed with me telling him "just until and then we will get a present".

Not yesterday though...what a big, big boy!! 

As we were getting ready to go out to the dinner/stage area on the field, Braden started with "I not like this....I not want to go..."  I was worried but Brandi, the community relations person came in and helped me distract him. I told him we would get to give Aurelien a trophy and that was a BIG incentive. Braden LOVES trophies!! 

He talks about trophies all the time. So much that one detour day this summer, he and two of his adult friends, Ms Kim and Ms Jo, stopped on the way home and got trophies for Braden and Zach! Now they each have a "best big brother and best little brother trophy". SOO cool!!  In fact, for my birthday, Braden told Brian he wanted to get me a trophy so they had a trophy made for mom! :) 

Priceless!!

The first person he got to see was CJ Sapong. CJ and Braden were featured in our 2014 A Year of Hope Calendar with Sporting KC. And CJ is AWESOME!! He is soo funny and silly! B had a great time with him so when he got to see CJ again, he was very excited!

During the Calendar Shoot

Last night!

Well, we had arranged that I could go on stage with him if he wouldn't do it, but when we got there, I asked Mr. Illig to hold his hand and take him up on stage. 

And Braden walked up with him! 

ALONE!

He did it!!

Okay, he fell on the stair, but Mr. Illig had him and helped get him back upright (it was a really tall stair and he didn't expect that...plus he has his mother's graceful moves) ;)

The emcees talked about Braden and that we started Braden's Hope and everyone clapped for B...it was SO very sweet!!!

He then stood on the stage between Mr. Illig and Coach Vermes and held the award. Aurelien came on stage and knelt down beside Braden. He put his head down and Braden rubbed his bald head! 

Mr. Illig to Braden's right, and Coach Vermes talking to B on stage

SO cool!!

It was at that point that the tears began to flow for mom.  

Absolutely priceless!

Aurelien Collin smiling at B and sweetly patting his shoulder. WOW!

Everyone clapped and they took pictures! It was just like Braden Hofen was any other kid!

ANY OTHER KID!!

Being able to type those words is more of a gift than I can describe! He DID IT!!

He really did it!!

Aurelien took Braden's hand and walked him off of the stage...making sure he navigated the step safely (because he had had his own toe clip on the way up).

As he held his hand, He asked the staff around him if he could give the award to Braden.

I heard it and tried to process it, but instead just broke into a jaw dropping open mouth, tear filled pose.

And then, he bent down...handed the award to Braden and asked him to keep it for him.

Braden's entire face lit up!! 

A TROPHY!!!

Braden thanked him and clutched it to his chest with both hands. The smile hasn't left his face.

What an amazing thing to do!!  Just unreal!! WOW!!

This morning, the first thing that Braden said when he woke up was...

"MOM...I got a trophy!  Where is my trophy?" So we went downstairs to hold it again!

Aurelien Collin, Humanitarian of the Year?

I would say YES!!!

That was an extremely selfless act Aurelien Collin!! You are AMAZING!!

Thank you to ALL of the Sporting Organization...you are unbelievably gracious to all of our kids!!

And you have made Braden smile more times than I can count!

WOW!!!

and then....

It just doesn't seem to end.

We got the results from Braden's bone marrow and got the PERFECT answer..no disease.  WOO HOO!!

What a HUGE relief...or so I thought.

SO...I emailed our team in Philly and they told me that they were doing further testing to see if Braden had a form of pre-leukemia and that would take 2 weeks of wait time for the results to come in.

UGHHHHH!!!!

And damn....I thought we were in the clear.

So we wait, but...there's more...

Seriously.

We go to Philly for scans on July 16-17...scared out of my wits but hopeful. It's entirely possible it could be in his body but not in his marrow so there's another scare.

We know that Braden can't continue the treatment he is on right now because it's either a toxicity or it's not working any longer....awesome.

He's been on that drug for almost 2 years and was supposed to have it for a little over one more year. The irony is that we fought to keep it and now we lost it during the same time frame they were scheduled to take it from us.

I keep thinking that we must have fought for it so that another child (because all the kids taking that drug get to keep it now because of our fight) needed it and it will help him/her.  It had to be for some reason because it was quite a battle with Abbott Labs.

SO....the question is this. IF scans come back clear, he could qualify for a different drug that is being given to children that have neuroblastoma and are in remission.

BUT...his blood counts have to come up within 120 days and if it's longer than a few more weeks, we would have to repeat the bone marrow aspiration for him to qualify AND I haven't had a chance to fully review the data yet....

Well..I've had a chance. I just haven't.

I've been pouting and sulking and worrying....

and detouring!!

There's no rush because he can't qualify right now anyway until those platelets come back up so I'm choosing the later list of things to do. I ROCK at at them ALL!  But...I'm especially good at pouting...

There's a reason.

This new treatment could be done in KC which is nice BUT it means our Philly team won't be in charge of our treatment plan.

I really didn't realize how big of a deal that was to me, but it's HUGE!

Dr. Mosse has been our saving grace and that team has my complete trust...100%.  Okay...97.999%...I'm always skeptical of everything so I need a little room for that. ;)

On the flip side...I give Dr. Neville in KC the same amount of trust...she ROCKS and I absolutely adore her AND believe in her work.

I am literally mourning the potential loss of Dr. Mosse and team as our Principal team.

And at the same time, I'm thrilled to think Dr. Neville could be doing that role...she really is amazing.

So to transition my heart and mind, I'm pouting, sulking, worrying and most importantly...detouring. I need a break. I've been working 24/7 for a whole lot of months and the boys are off school and deserve to have a mommy who plays with them so I'm taking a break..a much needed break....but that break is for multiple reasons, not just about playing, it's also about sulking and pouting and worrying! :)

It's soooo complicated! LOL!!

In the meantime keep those prayers and hope coming in the event that he can qualify for this new treatment so we can really consider it. I just can't wrap my head and heart around hoping for it until it's even a possibility with clear testing results for the pre-leukemia, and clear scans, and....information about this drug that makes us think it's reasonable and helpful.

It's a roller coaster...this entire nearly 6 years of crapfest has been a roller coaster BUT...

we are blessed to get to ride...

The alternative is he is an angel and we don't get to even try.

We are VERY fortunate and that thought never escapes my head and heart.

And it also never escapes my head and heart that this is a REALLY messed up think to have to be grateful for...

cANCER...you suck.

And we will keep fighting you with everything we have...forever.

Keep hoping!!

TAKE THAT cANCER!