Thursday, March 30, 2017

My Dad...

My dad passed away after a battle with lung cancer on March 24, 2017 at the spry age of 91. He led a good life and I will miss him terribly.

All three of his children (me included) shared stories of dad at his funeral. This is mine: (okay, the extended version so people wouldn't boo me off stage at the funeral home)

As I was going through a chest that contained many of my dad's memorabilia items, I found  photo of me on my first "big horse", Flick. This picture is of me and Flick when I was about 7 or 8.

And it reminded me of a story.

Pretty much since the day I could speak, I began asking my parents for a big horse. Every day, relentlessly and with incessant nagging, I begged for a big horse.

And one day my parents showed me my new real horse. We were standing in a pen with a pony they called "Peanuts" and I was pretty confused. I had asked for a BIG horse and this horse was not big.

He was really very small. I suggested we take him back and trade him in for a big horse but my dad explained that I would need to learn to ride Peanuts because in his words, "If you can ride a Shetland, you can ride anything."

He was right. That pony was the most stubborn animal I have ever met. I would get on and kick him to get him to go and he would just stand there. I'm pretty sure he was chuckling at my effort.

But I stuck with it and eventually I learned to ride Peanuts. I reminded my parents of that every day, relentlessly and with incessant nagging, until one day they showed me this big, beautiful, palomino gelding with two white socks and a beautiful white mane and tail. I was about five years old and he absolutely towered over me.

I was in love from the first minute I saw him. He was gentle and sweet and my new best friend, well second to my best friend Jana Jo, but a close second.

And Flick was FAST!! I mean fast. He would eventually become my barrel racing horse as we grew up together. He was so fast that he could smoke any of the other horses we owned, with ease. I loved that about him!

My dad wouldn't let me ride him alone at first. He led me around the pen and then he allowed me to ride without him leading me but within an arm's length. That grew going outside the pen into the fields and pastures away from the barn but I had to be hooked to a lead that my dad was holding while riding one of our other horses, Cactus.

And every day I begged him to let me ride without being connected to him but dad said I wasn't ready yet.

I knew I was ready and I begged him every time we rode to let me go without him until finally one day when we were about a quarter or half mile from the barn, he reached down and unhooked Flick and smiled at me and said I was ready.

I was SO happy!!! Finally...I had waited all of my life...and being 5 years old that was a REALLLY long time!!

I smiled and we kept riding but it only took Flick about a minute to realize he was not hooked up to dad and Cactus any longer....and he was so over this riding thing and wanted to go back to the barn.

SO...Flick turned around and made a bee line for the barn. He ran as fast as he could go. I was holding on with everything I had while screaming, "HELP DADDY!!! I CAN'T STOP HIM!!!" and my dad was shouting, "JUST HOLD ON!!!! DON'T LET GO!!!"

He couldn't catch me. Cactus was too slow and as a parent now I can only imagine how terrified my dad was for me as he watched his 5 year old daughter bouncing in that saddle screaming and crying for him to help when he couldn't reach her. Falling that far at that speed would not be good and my dad would have known that.

Flick kept going that fast until we reached the barn where there was fence. He got right up to the fence and put on the brakes, full stop!

It was like I had been launched from a catapult and I just went flying right straight up and over Flick's head! Fortunately, where I luckily landed in some loose hay on the ground in front of him, and on the other side of the fence.

And I began screaming and crying!

I remember my dad rushing over and picking me up. After he made sure there was nothing broken, he  began brushing off my britches, pulling the hay out of my hair, and wiping away my tears. And I'm fairly certain he suggested that we not tell mom about this whole thing.

When I had calmed down enough, he told me that I was going to have to get back on Flick and ride him again, that day.

What had he just said? Had he not just witnessed the whole runaway train thing? Clearly, I was NOT ready for a big horse. We had all made a grave mistake and we needed to trade Flick back for Peanuts because the dream of having a big horse was just not something that was going to work out for me.

As I was screaming, crying, and protesting my dad picked me up and just flung me on the saddle and started walking Flick around. I screamed, cried, and protested for quite a long time and dad said nothing. He just kept walking Flick around.

When I calmed down enough, he pulled the lead off and made me ride Flick by myself. When I had successfully accomplished the mission, he pulled me off the saddle and got down and looked me right in the eyes and said, "Do you know why I made you ride Flick again?"

The only thing I could think of was that he was a really mean person but he said that was actually not the reason. ;)

He told me that he made me get back up on that saddle and ride Flick because if I didn't Flick would always know that he had me "buffaloed" and I would never have control of him because he would always know I was scared of him.

And he told me that I needed to know that even though I was scared and didn't want to do it, I could.

That lesson has served me very well in life.

Just get up, brush off your britches, get back in that saddle, and go forward.

And I see this trait in my sons, most especially Braden who has been fearless and fierce through his two respiratory failures as an infant, autism, three cancer diagnoses/battles. His ability to get back in the saddle every single time absolutely amazes me. In that way, I see my dad every time I look into his eyes.

I then began to think about not only how this lesson served me well but about how much it said about my dad. My dad was humble, quiet, gentle, kind, patient, and sweet. He never raised his voice and may have been the most agreeable person in the universe. You would not have chosen the words "strong and fierce" to describe him but he was strong and he was fierce.

My dad was an County Extension Agriculture Agent and he started a corn husking contest in Logan County, Kansas when we lived there. I'm sure that the board he reported to was super excited about his concept and plan. I'm sure more than one probably said,

"So let us make sure we have this right. You want to have some rows of corn, put a hook in the hands of people, send them down those rows of corn, ask them to shuck the corn and throw it in a wagon and then we will count how many they shucked into the wagon and how many they left behind and choose a winner. It sounds awesome Ross...thrilling and exciting and we are sure there are hundreds of people who will turn out for that."

But my dad believed it would be a source of community pride and it would bring people into our community by the hundreds for commerce and fun.

And guess what. It did. Hundreds of people DID turn out and it grew and grew and grew until multiple states adopted corn husking contests!

He was strong.

And he was fierce.

And he was also humble and kind.


Along with the picture of Flick and me, I found a note that my dad had saved since 1974 when I was a third grader. I had no idea he had saved this and I didn't even remember typing it.

Often, my dad would go back to the office at night or on the weekends and I loved to go with him because the Home Economist had an electric typewriter and I would type for hours while he worked.

This was one of my "masterpieces".

 It says,

"I love you very much. You are nice. You drink coffee. You eat chicken. You eat pheasant. You hunt. You're a farmer. You ride horses. You read very much. You ride Cactus when you ride. You use manners at the table.  You say please and thank you. You shoot at pheasants but you miss every time you shoot. You shoot at ducks but you miss every time you shoot. You go to the fair. You go out of town. You go to to Hays. You go to Ellis. You go to Hutchinson. You go to WaKeeney. You go everywhere but home you silly goose.

The End

By Deliece Your Daughter


I do love you dad. Thank you for brushing my britches off, picking the hay out of my hair, wiping away my tears and setting me back in the saddle when I was too little to do it by myself.

And for teaching me how to do it for myself so I could be bigger than my fear.

I will miss you every day until we meet again in Heaven. I hope to make you proud of me!

Tuesday, February 9, 2016

Kindness, it matters...

Be kind.

Kindness means to be friendly, generous and considerate.

It's pretty simple to understand.

But somehow, it seems so difficult to live...

for some...

not all....

Let me be clear that being kind doesn't mean that you are never going to disagree with someone,

that you will never take issue with them,

that you will always get along with every person you encounter,

and that you will choose to be friends with everyone you meet.

Kindness is about being humble...

and not being a "Bye Felicia" kind of person...

because none of us is all that...

we are ALL works in progress...

and intentionally proclaiming our superiority over others, is certainly not what kindness is about.

Kindness dictates that we understand the concept of humility before anything else.

Kindness is about being selfless....

and giving up your time to listen and appreciate rather than proclaim and judge.

It doesn't mean we are doormats who never stand up for ourselves or others.

We all should make our points and then discuss those points.

We even can agree to disagree on things...

But then we must move forward...

Without resentment.

Kindness is about embracing differences....

and seeking to actually understand those differences...

not just tolerate them.

Kindness is about being unassuming...

while being willing to learn about different points of view...

so we can grow....

because nobody knows everything.

My 11 year old has autism.

Because of his autism, he doesn't understand the concepts of judging people and gossiping. He is literally incapable of gossip and has never said a negative or nasty word about anyone as a result, ever.

He likes everyone, and loves a special few. He approaches every person with love in his heart and a smile on his face, without fail...

Even when he is not met with the same.

He teaches me about kindness through his example and by watching others with him.

His friends are so sweet with him and the level of kindness these children possess and show is absolutely what we should all try to achieve in our lifetimes.

I've watched them sit with him at lunch, when they could sit with "normal" kids.

I've watched one of his friends comfort him and hold his hand to walk him into class because he was scared.

I see his friends stop to hug him or give him high fives every morning when he gets to school, every single day.

I've seen kids leave groups with "normal" peers to seek him out to play because he was alone.  They have skipped competitive league games to come to his birthday parties. They have gone out of their way to invite him to watch their sports teams play so he can cheer them on. They know it's a way he can be involved because he will never be able to play on a competitive team.

And I have witnessed his friends come to his defense when others do not act with kindness toward him.  That makes me grateful...

and hopeful.

What if we could all learn to be truly kind like these kids?

We could all learn this from these children and start to model their examples of generosity, friendship, and compassion.

What if we all could be





rather than the opposites.

Because we are all a little bit like the dismissed and belittled "Felicias" of the world...

we are all a little misunderstood...

and we are certainly all works in progress.

What if we all looked at our OWN reflection in the mirror and drilled deep down inside that person to see where our level of responsibility and ownership lies for all of the things we want to judge and criticize others for?

Just be kind.

It's that simple.

Be Kind!

Tuesday, January 26, 2016

Relapsed Neuroblastoma Survivor...

January 26, 2011 Braden and I were in Philadelphia for scans.

His relapsed neuroblastoma had continued to defy a cure although scans every 3 months had shown that at times it was shrinking a little or at least staying stable.

The chemo he was currently on was wreaking havoc on his system and once again our oncologist in Kansas City was telling me that we needed to abandon this therapy he had been on for 8 months. The oncologist said that it was time to stop because the therapy was just too hard on his body. We were trying to qualify for another therapy but his platelets remained too low and he couldn't so we convinced our KC oncologist to reduce his chemo by 50% and we doubled the time interval between his doses in the hope of continuing the therapy and keeping his cancer at least stable.

We had several times before this that our KC oncologist had told us that we were at the end and we needed to accept our reality. And every time I had argued, advocated and powered through it, but this time I was beginning to wonder if he was right. However, I was able to buy enough time with him to get him to concede to one more round before Braden's scans on January 26.

We knew that the this scan was critical, to be honest, every scan is critical. If scans show that the cancer is stable, that's a win. If scans show that the cancer is getting smaller it's a victory but if it's growing, it's a different game entirely. And it's never a good thing.

Braden was six. 

We went in for scans and then headed to clinic to see Dr. Mosse. She is our oncologist in Philadelphia. 

We were experiencing "CHOP time" and had about an hour delay in trying to get in to get the results from scans. To top it off, the first person we saw in the waiting room was Dr. Mosse who came out to tell us hello. That never happens! She is always in the back and we don't see her until result time. She commented that he looked great which helped me a little bit. Surely, she would not have said that if things were worse.

We were eventually called back to the examination room and Dr. Mosse was with the fellow who was working with her. She smiled and said, "I'm just thrilled to be able to tell you that Braden's MIBG scan is completely normal". 

I just sat there and all I could eek out was, "I'm going to need for you to say that again." She did and then the tears started.

For his cancer that had not been cured in 18 months of the therapies post relapse to suddenly be cured with half the dose and double the time interval between his latest chemo cocktail (that he had been on for 8 months) to suddenly get it was remarkable.

Our conversation didn't end with advice to go home and enjoy our victory, instead I pressed for us to try to get antibody therapy for Braden now. I wanted to make sure we cleaned up any left over cells. I firmly believe that we need to treat neuroblastoma like a chronic disease because the cure rate is so low. We think we have it beat, but we don't so follow up therapies are critical when you have it "down". 

We were trying to get it for Braden enrolled in antibody therapy when we found the relapse which meant he couldn't receive it. However, because he was in cue, we were able to get a unique exception for him to receive it. At that time, it was not standard care for all children with neuroblastoma as it is currently. It is a therapy that can go in and clean up leftover cells that scans cannot see and I wanted it, badly.  Dr. Mosse made calls to the NIH and gained us the exception and we would start it a few weeks later. 

When Braden's neuroblastoma relapsed there was no known cure. Five years later, there is still no known cure and less than a 10% chance for five year survival.

Somehow, we have been blessed with those five years and today we can say Braden is a neuroblastoma survivor.  He still has 3 years left to go before he is a secondary leukemia survivor but we are going to celebrate today. 

We left the hospital and headed to the airport in Philly, but it had been snowing and the forecast called for a major storm. Because of that, I had kept our hotel room in the event we didn't get out that night. 90% of the time, we don't get home the same day we think we will when we travel to and from's always something and the forecast was enough for me to think we were probably not going to make it out that night. 

The airport ended up closing about 30 minutes before our flight was scheduled to depart because of thundersnow. The unhappy travelers were most certainly just that, unhappy. But we kept smiling. Someone commented about how we sure seemed happy with the bad news and I, rather loudly, explained why and that no travel plan changes could change our happy faces that night. I heard far less grumbling after that, at least no grumbling close to us. 

We were lucky enough to be on the last shuttle that left the airport to the hotel where we watched the most beautiful snowstorm. Snow is one of Braden's most favorite things in the world and I'm still pretty sure that it was no coincidence that we got nearly two feet that same day. 

We have been blessed and lucky. No other child has traveled the therapy journey that Braden has traveled, he is completely unique.  I still don't know how or why and there is a great deal of guilt that comes from being able to kiss my son every day when so many mommies cannot.

Thank you all for keeping us in your thoughts and prayers along this journey. We still have bridges to cross and miles to travel and we will keep doing that, one step at a time.

With HOPE!


Wednesday, October 7, 2015

My Punkins and Their Pumpkins....

We made our annual pilgrimage to the Pumpkin Patch this week. I chose to take them after school was over so all the field trip groups were gone and it would be less busy than on the weekend.

It was the perfect day, no crowd, cool temperatures, and tons of fun.

We rode the hay ride out to the pumpkin patch to pick our pumpkins and our boys chose some "unique" specimens.

Now when I was a kid, we had one pumpkin and it was perfect. It was usually pretty large and always perfectly round with no damage on the outside. Then my brother would carve it on Halloween and mom would put a candle inside of it. It was the classic Halloween scene.

Well, our boys didn't pick perfect pumpkins. They were far from perfect.  They were more like pumpkins that would have been characters in the movie "The Breakfast Club" or pumpkins that would have been found on the Island of Misfits in the movie "Rudolph The Red Nose Reindeer".

Braden found his first one immediately and he fell in love. It was a "bumpy pumpkin". (they are his favorite kind)

Those bumpy pumpkins are so ugly and this one was lopsided but he loved it so I picked it up and the backside was all scarred up and dented.

I showed the bad side to him but he still loved it. I was about to talk him out of it by telling him that it was yucky and ugly when I stopped myself short because I realized something more important than that dented and scarred ugly pumpkin.

That pumpkin is a lot like Braden. He is perfect and beautiful but when you take his shirt off you see  many scars from 8 years of cancer treatments, multiple surgeries, 4 central lines, bone marrow aspirates, stem cell harvests, and tattoos which were markers from his radiation treatments. 

Those scars tell Braden's story. 

And apparently this pumpkin has a story too.

So we brought it home because it is perfectly imperfect. The fact that he loved it regardless of it's lack of perfection nearly had me in tears.  

There is nothing more beautiful than acceptance and I love his pure and kind heart that looks past imperfections to see beauty.

His second pumpkin, yes I told him only one pumpkin and then I totally caved, was one that he said looked just like a jack o'lantern pumpkin. The problem is that the top was split open a little bit.

I opened my mouth to tell him that it wouldn't last very long and would get yucky soon and we would have to throw it away, but then I stopped.

Again, this is like Braden's story. The doctors have told us more times than we can count that he wasn't going to live and we needed to spend our time well. We chose to fight and to make memories with the time that we were given.

So we have one pumpkin that isn't going to last as long but until then, it's going to be on the front porch with the others proudly displayed.

We walked back through the patch to find Zach. He's a 7th grader and apparently there is an unwritten law that says that you cannot be seen with your mother and little brother in a pumpkin patch so he was far.....far away searching for his pumpkin.

I had not been given the memo about pumpkin patch etiquette prior to the pumpkin patch visit. (I would have still made him come with us though) ;) 

Something about it totally throwing off his street cred??

We found Zach, with the hood of his jacket covering his face so no one would recognize him.

He had two small pumpkins in his hands.

 Yes, once again I said only one pumpkin and then I totally caved. But I was really excited because they looked pretty perfect to me.

I caved because he explained that he found each of them hidden under large pumpkin leaves where no one could find them. He said they wouldn't be seen and no one would choose them so he wanted to bring them home because they should be noticed.

I melted. 

And nearly cried again.

These pumpkins are just like Zach.  Quietly hidden away hoping to be noticed for how special he really is. He's never vocal about it but being the sibling of a kid with cancer is a tough row to hoe. Nearly all the attention is on the child with cancer because you are fighting to save his life. 

It's not fair and we do try to even it out and our friends help try to even it out, but it's the truth. Zach has been hidden just like these pumpkins.

I love this boy's heart and compassion. That's my favorite thing about him.

I thought we had all the orange things we needed but at the checkout stand, Zach found a gourd and wanted to get a small one because he said it was tradition. 

I do not recall this tradition.

We bought the gourd.

That makes 5 pumpkins...when we went for one.

I'm weak.

When we put it on the porch, Zach set it on top of one of his smaller pumpkins because he said it was small so it needed a little perch so it would feel special.

Once again, I teared up.

Zach is not tall. He often gets made fun of because he's one of the shorter kids in his grade level. 

I wish I could change that, I wish people could just be kind about sizes of others. 

And I wish we could all be a little kinder to ourselves about our own sizes too. 

So our "Breakfast Club"/ "Island of Misfits" pumpkins were specially chosen by my punkins and they  have meaning.

None is perfect, each has its own issues and imperfections...

In their simplest of terms they are:





and judged by size...

But, as they said in the Breakfast Club, aren't we all just a little bit of each of those things as well?

What if we could all accept our own imperfections and the imperfections of others as easily as my guys did with these silly pumpkins...

Now that would be perfect.

Sunday, August 9, 2015

Never Ever Give Up...

One thing we've learned since our daughter, Miranda, died is to never give up even when things seem impossible to get through.

August 1st was Miranda Day, the day she was born and the day she earned her angel wings.

She would have been 14.

The lesson to never give up hope, to never give up fighting, and to believe in miracles regardless of how bad things get has been tested repeatedly since 2001.

I also learned that God is ALWAYS good. Always. Even when we don't get the answer we wanted when we pray.

I prayed for Miranda to live, but she died.

And God answered my prayers by loving me through it and showing me that I can be strong and that He is there for me if I just allow him to be. I think he grieves with us and is there to love us through the hard times.

I do not believe the "bad stuff" comes from Him. Bad stuff isn't a test from God; it's just bad stuff. God doesn't give people cancer to test their faith or to punish their parents.

It's. Just. Bad. Stuff and you have to get through it, either in one piece or in several.

Because of my faith, I have learned that persevering through the tough things is possible even when it seems impossible. I choose to remain in one piece.

It's not always enjoyable...and certainly the circumstances that we need to persevere through are not desirable...

but the way to win over those tough things (like cancer) is to refuse to allow it them to win.

I'm stubborn.

Launching a passive aggressive offense comes naturally for me. that our lives have been more....I suppose one could call it "normal"....with the recent lack of cancer treatments (TAKE THAT cANCER!) I'm trying to reclaim my life and #TakeItBack.

SOO....I decided to do something really not so smart, illogical, and pretty much absurd...

and I signed up for a half marathon.

The why is simple. I have Multiple Sclerosis, I am a cancer survivor, I've been a "momcologist" for almost 8 years, and I spend my days fighting for childhood cancer research and awareness. Oh and I don't run.

Seriously....8 months ago, I couldn't even walk down the stairs without gripping the stair rails and moving to the next step one foot at a time while squinting in pain.

So maybe it's not that simple...

but it IS passive aggressive and totally stubborn.

I wanted to do something that would be really hard and seemed impossible...and this sure fits that bill.

SO to keep myself accountable, I posted on Facebook that I was going to do a half marathon. There was no way to back out after I posted...I mean it's Facebook...people only post things that are 100% true on there.

Notice I didn't say I was going to "run" a half marathon, I am going to finish one but my gait has been termed "r/alking" by one of my dear friends, Stacy.  Mostly walking mixed with a little running.

I'm so gonna r/alk that half! ;)

Two of my friends, Cari and Shelley, made a t-shirt for me that I will wear the day of the marathon. The front is an image of my biggest reasons to #TakeItBack...Miranda, Braden, and three babies.

Okay, please don't tell Zach I said baby because he's a seventh grader and that would result in much grumbling and grouching.... And I don't have time for that...for the 100th time today.


The back was inspired by a t-shirt my friends and I had a few years ago for an event we called "Trail of Beers".  It had like 20 bars listed on it and there was a checkbox beside each bar. The goal was to get each bar checked off in one day.

And you had to drink a beer at each stop...

except for the DD....

and I was the DD (smart me) automatically got a checkmark just by getting your passengers there.

This time, there are no bars listed officially on my shirt...

(although I'm fairly certain there will be one soon after the finish line)

The final box gets checked off after I cross that finish line.

R/alking or crawling....

Every day I write the name of a childhood cancer hero or angel hero on the bottom of the back of my shirt and I think about that hero while I am running..

When I feel like it's getting hard and like I don't want to keep running, I think about that hero and all that child has gone through.

The keyword there is "Child". These are kids who should be focused on swinging and running and playing, not fighting cancer.

And I push through my pain because it doesn't even begin to compare to theirs.

I'm not very fast...and I'm certainly not always graceful...

Yesterday was the perfect example of how "not" graceful I was. It was storming that morning so I went to the gym to r/alk my 3.5 miles on the indoor track.

About mid-way through mile 2, I felt myself begin to fall.

The last time I fell, I broke my I was eager to avoid that.

Instead I threw myself into a baseball type slide on my hip. Jarod Dyson would have been proud!

I was safe and I got right back up and started running again. Unfortunately, the "slide" occurred right behind the television sets in the gym...which is where every single person doing cardio is looking.

I was totally on center stage!  Awesome!!

I recovered and was doing well when somewhere in mid-mile 3, I felt myself begin to fall again but this time my weight was shifted all the way forward resulting in a less graceful fall looking more like this:

Except this guy looks better than I did.

I got right back up and started running again, but I was cracking up. And it was right in front of the free weights section of the gym (I call it Muscle Beach). It's the most testerone ridden corner of the gym filled with buff people doing buff people things and I totally wiped out flat on my face right in front of the buff people!


I am physically unharmed, but I did put a hole in the knee of my favorite capri workout pants so I'm a little messed up emotionally about that.

It's my MS...I have a terrible sense of balance on a normal day as a result of my MS and heat is one of my triggers. We are having really hot weather in Kansas right now. What? Hot weather in Kansas in August?? ;)

I just need to think about my feet and my balance more when I'm running...

rather than jamming to Disturbed.

My half marathon journey is likely to be more falling than flying but I'm going to keep going and Never Ever Give Up!

I'm taking my life back...even if it does result in falling.

I'm going to keep getting back up. All three of my children are fighters and the names of the heroes I write on my shirt are fighters. They inspire me.

My goal is to honor them and raise awareness through this journey. It is NOT a fundraising effort, it's just about fighting like these kids.

Some of my amazing friends put together a video about why I'm running. A huge thank you to some amazing guys for this beautiful video. We will keep making some clips so you can hear all about our kids.

Special thanks to  Tug McTighe, Jon Hardesty, and Matt Loehrer at Callahan Creek and Brandon Green at Evergreen Images for the video!

I hope you like it!!

The YouTube link is:

Today my training schedule says that I can either run or cross train.

I think I'll pick cross training and save my second favorite capri workout pants from certain disaster!

One thing I know is that I'm not going to quit....

No matter how many pairs of capris I have to buy! :)


Wednesday, July 15, 2015


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".


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


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 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.


Wednesday, March 18, 2015

Last Year's Plane Ride...

One year ago today, Braden then 9, Zach then 10, and me then 39+  boarded a plane to Philadelphia so Braden could have a bone marrow transplant for his secondary treatment-induced leukemia. His only hope of surviving was for Zach's bone marrow to be transplanted into his after we killed off his own bone marrow with high dose chemotherapy.

Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.

Well..cancerS had to stay quiet.

The concern was that Braden's initial cancer, neuroblastoma, would come back once we knocked out Braden's own immune system. He had relapsed with that cancer when he was five and there is no known cure for relapsed neuroblastoma. We did some "crazy" treatments, a phase one study in which he was one of only three children in the world who got it, and various other treatments to teach his own immune system to recognize any neuroblastoma cells and keep them dormant or kill them.

So once we knocked out his own immune system, Zach's cells would not have that same immunity and any dormant neuroblastoma cells would come back. And he would die.

But if we didn't do the transplant, he would die from the secondary leukemia.

Choosing a treatment path was very much like choosing how we wanted Braden to die.

So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.

Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.


That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.

I did what mother's do, I tried to figure out things that I could do to make this transplant as comfortable for Braden as possible.

So I shipped all of Braden's favorite toys and comfort items to The Children's Hospital of Philadelphia and packed clothes for two and a half months and two seasons. With his autism, it was important that we had as many familiar things for Braden as possible. I packed up his BatMan headquarters, his "guys" which are a mismatch of small plastic figures of Star Wars Characters, Avengers Figures, and Power Rangers guys, his favorite blankets to snuggle in, anything that would make the hospital feel more like home but could be washed every day or wiped down to sani-wipes to keep them germ and dust free while he had no immunity.

I am a planner, a strategic packer and I bring everything including the kitchen sink (well....not really but I always have plenty of wipes, so sort of).  I had two suitcases filled to 49.999 pounds of imporatn stuff, and a shopping list of items to get once we arrived in Philly.

And we had Braden's three stuffed tigers. Braden goes everyplace with his three stuffed tigers, they are family. They sleep with him, they ride with him in the car, they always go to the hospital, they ride in the plane, they go everywhere with him because they are his heart.

We got up the morning of March 18, 2014 and traveled to the airport. We boarded, took off and flew to Atlanta, which is clearly in a direct path between Kansas City and Philadelphia. ?? 

Both boys were excited about flying, Braden because he loves when the airplane bounces in the air so he can hold his hands up in the air and yell, "WHEE, THIS IS FUN!" as if he's on a roller coaster. Zach was excited because he was going to get a soda, which is normally not something I allow him to have at home. He feels like a total rebel when he gets one.

Then the next leg from Atlanta to Philadelphia...

We landed in Philly and heard Braden's familiar, "YAY AIRPWANE, Good job airpwane!" each while he clapped loudly and everyone near us giggled. It happens every time we land. (it is pretty cute)

What I remember isn't so much that he said it again, but that I felt warm tears running down my cheeks when he said it.  I don't just don't, but there were those dang tears running down my cheeks at that moment. Why in the world were they there? We had 6 days of testing before he was even going to be admitted into the wasn't time to cry yet, we were just landing. Crying now made no sense.

I hadn't scheduled tears on my agenda for today and I had to get two boys off the plane...why were these stupid tears coming now? I was angry because I don't cry, especially in public but I couldn't stop them from flowing even though I was trying frantically to end this public show of emotion.

I sat in the seat,  packing his tigers in his backpack and making sure we didn't leave anything behind on the plane while the tears continued to roll down my face telling myself to stop it right now,

when it hit me.

I wasn't sure I would ever hear him say that adorable phrase ever again.

I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.

We walked out of our house that morning for what could be the last time he would ever be home, We said goodbye to our cat, Indy, and our fish, Darlin'...

We left everyone we loved in KC, all of our friends, and neighbors, Braden's best friends, who are his heart and soul, for what might be the last time we would ever see them...

everything we did that day was a potential last because it was quite possible that he was not coming back to Kansas City with us.

Over the past seven years of continual treatment, there have been more times than I can count that I have been terrified that we were at the end.

March 18, 2014 was another of those times.

It was so much more than a flight to Philly, with a stop in Atlanta.

It was the beginning of what we hoped would be a...

well, what we hoped would be a beginning.

And thankfully, it was.

Yesterday, Braden and Zach and I went on a four mile hike for two hours and I was the only one who was tired and ready to leave. Braden begged to stay and "go again?"

I have no idea what we will do today in celebration of Braden being here one year later. The odds were very much against him still being here today.

The beauty of today is that we can do whatever we want to do today...

we can do whatever the four of us want to do today, the possibilities are endless because we have been blessed and fortunate enough to have had another year with Braden.

Don't take the ability to make choices about what to do with your family each day for granted.

Every day is a gift and begin able to simply choose to do something as mundane as going to the store with my kids is...