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.

Never.

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 cry...it 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 hospital...it 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...

remarkable.

TAKE THAT cANCER!






Sunday, December 28, 2014

Future...

7 years ago on December 28, we stopped using the word "future".


We were told that Braden had a 30% chance of surviving his neuroblastoma diagnosis for 5 years.

Then a year and a half later, we were told there was no known cure for his relapse.

Then 17 months ago, we were told by both of our cancer teams in KC and Philly that they had never seen a child survive the particular type of secondary leukemia Braden has following a neuroblastoma diagnosis.

Future hasn't been word I have chosen to use since December 28, 2007.

It seemed a bit irrelevant...

and a whole lot sad.

While the word future isn't my favorite word, and the word past is 

well, 

emotionally conflicting...

because it's been a really rough 7 years, but he's still here.

So what do you do with equally intense amounts of gratitude and anger?

Quite a quandry.

But, every year on Braden's cancerversary, I am reminded of the grace of God and the tremendous blessing He gave us by trusting us with this very special little boy who would bring so much joy and clarity to our lives.

7 years ago everything familiar to our family was wiped out with one x-ray showing a large gray mass.

Braden was oblivious to why his world had been completely changed in every way you could imagine. 

His autism requires constants, routines, and predictability.

He had none of that.

He didn't understand why everything in his life was scrambled because he doesn't even know he has cancer. 

He has no concept that this isn't the way we all live.

He didn't know why people were constantly sticking him with needles and tubes,

He didn't understand why he was hooked up to machines almost 24/7 for over a year.

Why he couldn't see his friends, why he didn't live at home very many days, why he did live at the hospital, 

yet he was still smiling,

and enjoying life,

while fighting to have a future.

He asks no questions about why people are stabbing him with needles, injecting him with poison, holding him down for meds.

He harbors no resentment...

anger...

fear...

doubt...

worry...

or hopelessness.

He's never wavered in his constant example of positivity, 

perspective, 

love, 

and an immense appreciation for every single breath.

There's a life lesson there.

A life lesson I could benefit from, 

a life lesson many of us could benefit from.

All thanks to cANCER.

cANCER who thought it was getting the best of this brave knight.

We would trade every lesson for him to not have to endure all he has gone through in his short lifetime.

Sadly, it doesn't work that way.

So the best we can do is to try to live with the same happiness, appreciation, love, fight, courage, 

and HOPE that Braden lives with every single minute of his life.

Anything else does nothing to honor his seven year long victory.

As of today, he's winning and cANCER is losing. 

But, as we were just reminded when we went back for scans in Philly a few weeks ago, 

it could all change at any moment.

It feels like we are walking over a bridge suspended by a rope that is unraveling.

And there's Braden, crossing that bridge with his smiling face, 

and the beautiful naivety that accompanies being oblivious to the unraveling rope.

Instead of worrying about the rope and its impending doom, he's happy just because he's still on the bridge.

He's focused on putting one foot in front of the other, while being joyous just to be traversing the bridge, no matter how wobbly it is or where it is headed.

I want to live like Braden. 

I want to be that faithful, trusting, and grateful.

I'm a work in progress.

What I do know is that my faith in a God who didn't give this cancer to Braden and who will carry us through wherever the bridge leads us to in the future, 

is enough.

And that's all the "future" I care to consider right now.

Braden has taught me that HOPE is the key. 

HOPE is the optimism and the light.

HOPE shouts "TAKE THAT cANCER".

7 years and he's STILL here!

"They" thought they knew where the bridge was leading to, and when he would reach his final destination.

"They" were wrong.  

And we keep believing and understanding that while the future is unknown and uncertain, we have today.

And today is going to be as beautiful and wonderful as we make it, regardless how shaky that bridge is on any given day.

We live for today, tomorrow isn't promised.

We live with HOPE!

Deliece

Tuesday, November 25, 2014

Thankful For Lessons...

Life hasn't always been fun and games. I've had a lot of crapfest moments, our daughter died fifteen hours after she was born, we had two miscarriages, I was diagnosed with MS, I fought breast cancer, and the worst is that our youngest son has been actively fighting cancer for nearly 7 years.

But those crapfest moments taught me several lessons for which I am very thankful. So in this season of giving thanks, here are the lessons I am the most grateful for

(coincidentally they are also things I wish I had learned a lot earlier in my life).

Real Friends Are Blessings...
Friends who are loyal and present, friends who are the type of people you hope to be for them. I'm extraordinarily blessed to be surrounded by true friends who love others more than they love themselves and they show it every single day. They make me a better person and I grow because of them.  Cherish those people in your life and invest in them. People who are negative, gossipy, or cause drama have no place in my life.  I have zero tolerance for "mean girls" and I wish them well in their lives and walk away.  I certainly wish I had learned THAT lesson much earlier in my life.



Conflict, confrontation,and discord...
I know that sounds strange, but those things are actually very healthy when you adopt an attitude of "let's agree we disagree but I continue to respect your point of view". I love it when people challenge me, have new ideas that are outside my comfort zone, or simply disagree with my point of view. That's how we learn! It's pretty easy to always give myself high fives, but (and here's the tough thing to swallow) I am not always right. GASP! Conflict, confrontation and discord keep me honest, questioning and humble. Whether it's about whether I should wear a wig or hat when I was bald or if I'm confronting a world renown doctor about my son's cancer treatments, I grow by using my voice. The key is to equally use my ears.

Forgiveness...
Heaven knows I need this. I routinely screw up. Sometimes, it's worse than others, but I am blessed to be around people who subscribe to this thing called "forgiveness".  "My People" as I call my friends and network are amazingly gracious and loving and they forgive me when I screw up. The only return gift needed when you accept someone's forgiveness is to extend that same forgiveness when you are kicked in the teeth.  Every day I pray, "forgive me my trespasses as I forgive those who trespass against us". I can't be forgiven until I forgive others. Suck it up, see the other person's point of view and let it go.

Learn To Keep A Secret...
Oh how I wish I had learned that in my teens and twenties.  Seriously! It seems that the quickest way to spread gossip is to tell someone, "don't tell anyone!" and whooooshhhhhhh it's international headline news.  The bottom line is that you should never have to even say "don't tell anyone" to anyone when you are telling someone something. ;) Simply stated, when something is told to you, don't tell someone else. Use your intuition (which is generally screaming "shut up") and keep it quiet. The translation from our mouths to another's ears is usually all shades of confused and then you end up being quoted incorrectly. Then there's the worst case scenario...you blabbed and it ends up hurting someone you love. My middle name is now "Vegas".



Anything Worthwhile is Worthy of Fighting For It...
We have been told more times than I can count, that Braden was close to dying. I've had no gas in my tank more days than not, and I had a choice. Crawl under my covers and suck my thumb (like I wanted to do) or get up and fight. I'm Irish and I've dished out a lot of "black eyes" along the way. There has been a mountain of collateral damage from me fighting for him, but he is still here with us today. Tomorrow isn't a guarantee, it's a gift. Fight for what (and who) you believe in no matter what the odds or how big the monster is, just do it respectfully and with consideration for others.



Grace...
My mother used to tell me that we show grace, understanding, compassion, and kindness to others not because of who they are, but because of who we are. My mom's middle name was Grace and we named our daughter who died Miranda Grace after her.  Show others grace because you are a good person, not because you believe it will be returned to you. It actually may do quite the opposite and come flying back into your face. Don't let that stop you. It's not about them, it's about you!

God Doesn't Give Us Bad Stuff To Test Us.  

I simply do not believe that the God I believe in gives us pain and suffering. The God I believe in would not give those things to us to test us to see if we are going to remain faithful, or to drive us into His arms to repent. The God I believe in is a God of compassion, grace and love. He is there to give us...




And...Trust

I may be wrong, but I personally do not think that God has my life planned out. I think things happen and it's up to me to choose how I'm going to handle those things. I choose to try to employ all the tools/lessons I just listed above. And most importantly, I try to handle them in a way that I God teaches us through the lessons Jesus taught us on Earth. If even Jesus and his disciples were faced with hardship and agony, how arrogant would it be of me to assume that if God really loved me, He would save me from any crapfest moments??

I trust God. I trust that I will be able to see the better path to handle those hardships and I pray for strength to take that path as it is usually more difficult.  God is my strength and salvation and through all of this crapfest, that point has been repeatedly driven home. My faith has grown exponentially as a result of the hard stuff.

Be Thankful...
It's really that simple.

Just.Be.Thankful.

I once read something that said, "What if all you had tomorrow was what you thanked God for yesterday?" Amen to that!  Be thankful for your blessings amongst your crapfest because sometimes that very crapfest may end up indirectly blessing you if you open your heart and receive.















Tuesday, November 18, 2014

It IS a sport...

I'm not an athletic girl.

I duck when a ball is thrown in my direction, even if it is thrown gently,

and I can't reciprocate the throwing of a ball in anyone else's direction with any sort of accuracy...

whether it is the broad side or narrow side of the barn, so to speak.

My balance is awful because of my MS so I fall frequently, once I fell and broke my arm...

while walking....

Just.Walking.

Well in all honesty, I was chewing gum at the same time.




So it was a pretty big surprise when I decided to join a gym.

BWAHHAHHAAAHHAAAAA!!

Me...and a gym???

I'm just the girl who ought to join a gym...

so I can hang out with all the athletic people and their ripped physiques...

because my physique is sooo ripped...

not!

I'm more of a hail damage thigh and arm flab flappin' kinda girl.

You know what arm flab is right?

In the event you have been spared this particular gift, it's the flab that hangs from the back of your arm and flaps when dangled as you raise your arms...

Actually, if you are standing behind me on a windy day, there's a good chance you are going to look like my East Coast buddy here from my arm flab smacking you in the face...



I'm just not into sports and athletics...

However,

I do like to walk.

But,

you say,

walking isn't a sport.

Walking is just a "leisure activity".

Not the way I do it.

I am the most competitive person on the entire planet.

That is actually not a good thing because I take it way too far.

Like my first day at the gym...

I joined because they had an indoor track and in the cold weather of winter, I would have to walk on my treadmill day after day after day,

and I do not enjoy walking on a treadmill, repetitively stepping a few inches on a conveyor belt gets a bit boring after a few weeks,

and it makes me feel like George...

or Astro.

Ruh roh!




At least an indoor track gives me a chance to move in a tight circle...

(yup, nothing repetitive and boring about that)

Now I did mention that I'm the most competitive person on the planet and I believe that adding in an element of competition is the key to changing an "activity" into a "sport".

That's how walking is a sport...let me explain...

I strap on my heart monitor....cue up my app to track my speed and distance...put knee braces on both legs (did I mention I'm older than dirt?), and I connect my blu-tooth headphones to my i-phone, crank up my tunes...

(we should pause at tunes because that is an incredibly important part of the motivation/inspiration for walking in a "sport-like" manner. One must have an eclectic mix of Usher, Katy Perry, Godsmack, Metallica, Rob Zombie, Ariana Grande, Maroon 5....gotta mix it up and keep it fresh...for proper motivation/inspiration purposes.)

Each time I walk, my goal is to beat my personal best time...11:45 minute mile with no running, only walking.

My heart rate his locked in for a fat burning target, I'm swinging my arms like a crazy person (duck if you are near me due to the arm flap thing) and I am hauling bootie as I walk.

Literally. Hauling. Bootie....

I am literally hauling my bootie around that track.

I have one personal goal...

to pass every single person I meet....

especially runners.

Okay...

slowwwwww runners.

Shoot, once I even passed a person riding a bike while I was at the park.

Sure, she had piggy tails and training wheels but I totally smoked her! ;)

My first day at the gym, I encountered a very fit woman, about my age, running.  She was obviously a really experienced runner (as was identifiable by her tippy toe running and slim/trim/fit/looking great in spandex legs).

I actively disliked her from the moment I spied how awesome she looked in that spandex.

She had that "prancy" zip to her step and she was a strong runner...



I set my competitive eyes on my her...

Target Aquired...

Lock on...

ENGAGE!



And I hauled my hail dents and flabby flappies...

and cranked up Usher...

and in a few laps I was right next to her.

The instant I stepped two steps in front of her, she picked it up and zipped out in front of me.

WHAT?????

Being the competitive person that I am, my response (inside my head) was..

"Oh....so you wanna play sister, well game ON!!"

And I kicked it in again...and caught her...

again.

BOOM!!

I'm pretty sure I was actually smiling when I passed her the second time.

And then...

she did it again!!

She kicked it into gear and took off to pass me back.

Are you kidding me???


And this time she ran out much further to increase the distance between us.

I considered not chasing her down for a third time.

I rejected that consideration.

My heart rate was now 184.

I was seeing spots due to the lack of oxygen in my body.

My clothes were soaked from the sweat and I'm pretty sure they could hear my breathing in the next city.

But I cared not.

I did the only thing one can do when faced with this type of sports-related situation.

I broke out VanHalen's Right Now.

Bish is goin' down.

And I kicked it in again....

and I caught her again...

and she did it again.

For real???

So I literally stopped, put my hands on my hail dented thighs and loudly laughed and yelled, "you go girl".

She pretended not to hear me...pssshhhhhh...

She didn't have headphones on.



I began walking with my arms above my head to cool off...

literally and figuratively...

She pranced past me again as I was cooling down and it took every ounce of self control I had to not  talk trash about how she may have actually passed me...

but technically a "walker" had passed her not once,

not twice,

but THREE times that day.

So I repeat...

Walking is not a leisure activity...

it is a sport.

I'm headed back to the gym for the second time,

and "Ms. Prancy Runner" better bring her A-Game if she's there again...













































Friday, November 14, 2014

Just A Truck...

It was just a truck...

A blue truck...sheet metal, glass, rubber, fiberglass,

and probably a whole lot of plastic...

We had it for over 10 years and we just traded it for a "new to us" 2010 vehicle with about 70,000 miles on it because the 140,000 miles were beginning to cost too much to make sense for us to keep it.

And it was just a truck...

It had no feelings,

no physical needs as it sat out in the rain and snow,

no emotional needs requiring hugs of comfort and quiet understanding.

But somehow that truck carried a lot of emotions.

I vividly remember the night that my husband was at the dealership purchasing the truck.  I called him at about 5:00 and told him that our 3 month old, Braden, was getting sicker and sicker and having hard time breathing so I was rushing him into the ER and taking with us our 20 month old son, Zach.

So the sooner he could meet us there, the better.

Brian was just signing the paperwork as I called and soon he was at the hospital.

Braden was taken to the children's hospital downtown and immediately placed on life support due to respiratory failure...

for ten days we sat in the Intensive Care Unit....and hoped he would get better. When he wasn't getting better, I remember crawling into his crib with all the lines attached to him, and I told him that he was going to need to fight.

Just 3 years earlier, his sister had died 15 hours after she was born due to hypoplastic lungs at birth. She died hemorrhaging and convulsing in my arms as I kissed her and told her how much we loved her, that it was okay for her to go, and that she should look for her Grandma Ross (my mom who had died from brain cancer in 1984) and she would take care of her until I got there.

I explained to Braden that he was NOT going to get the same speech from me and that he needed to fight and live.

Inexplicably, shortly after that, Braden started doing better...and in 48 hours we were in a regular hospital room and 24 hours after that, we were home.

The truck had fallen off our radar at that point, but not off the dealership's radar.  They needed us to sign paperwork on the vehicle we had traded in when we bought the truck. We explained that we could not leave the hospital (and frankly didn't really care about the paperwork) so the salesman graciously came to the hospital and Brian left Braden's room long enough to go sign the papers.

He brought with him a gift for Braden and a book for us to pass the time...and his prayers.

Then on December 28, 2007, that truck took us back to the same ER because Braden was once again having breathing problems as he had multiple times after that first night.  We assumed it was pneumonia again...

He went in for a chest x-ray and the doctor came back with a horrified look on her face.  There was a large gray mass covering most of his torso and she didn't know if it was a tumor or a progressively regressive liver disease.

They wanted to transport him to the children's hospital downtown in an ambulance but he has autism and that didn't work well the first time because I couldn't sit with him.

We declined and drove him to the hospital in the blue truck. He looked out the window and said, "moon" when he spied a full moon.  Brian and I both remarked that we knew that what we were heading to the hospital for was going to change our lives forever but there was Braden staring out the window of that blue truck celebrating the beauty of the moon.

It set the tone for how we wanted to try to keep perspective for whatever it was he would be fighting.

It was cancer....and we've spent every day of the past almost 7 years since fighting Braden's cancer.

That truck has driven through snowstorms to get us back to the ER because he had spiked fevers that could be a central line infection which is life threatening. Snowstorms so bad all reports said to not get out on the road because it was too dangerous...but the blue truck got us to the ER safely.

There have been happy trips too...Zach's flag football games, his baseball games, drum lessons, school music programs, culinary classes...

It took Zach to his first day of preschool...then kindergarten and up to sixth grade, and it took Braden to his first day of preschool and up to fourth grade (what a huge blessing from God).

It's gone through infant car seats, booster seats, and now to just big boys sitting in its bare seats...

The truck hauled us to birthday parties for 10 years of memories, it heard a lot of little boy giggles between those doors.

And road trips....oh the road trips. Filled with me sitting in the middle of the back seat squished between the boys' car seats so I could retrieve toys, snacks, and drinks when they bellowed for them.  Two years ago, we took a road trip from Kansas City to Phoenix Arizona and the blue truck faithfully rolled through every mile and hour of endless cactus and beautiful rock formations.

That blue truck watched our boys grow up and traveled through 10 years of life with us.

But life isn't like the movie Toy Story...the truck doesn't come alive when we aren't around and have tell stories to the other trucks...

....at least I don't think so. ;)

(I admit that when I'm donating toys or throwing away broken ones, I do wonder thanks to that movie.)

And I wonder what the blue truck would say if it was having a conversation with its friends.

I probably don't want to know....there was a lot of accidental spit up and puking incidents that occurred while traveling over the years. Some caused by chemo, some caused by really bad reflux...

Ewww....

There were a lot of diaper changes in the backseat because I refused to change the boys in filthy public restrooms...that was then followed by scrubbing of the truck seats...

I imagine the truck would have some of its own stories to tell, if it could...

It was just a truck.

But saying goodbye was hard.

A lot of memories, good and not so good, were made in that truck.

And I was sad to see it go.  I hope it finds good home now and that the new owners treat it well.

We still have my 12 year old vehicle so we have a vehicle with a longer history than either of our boys as I bought it while I was pregnant with Zach

...and we have a "new to us" vehicle that we can hopefully make all happy memories in.

All FOUR of us for a very long time.

Goodbye "Daddy's Truck" and thanks for the memories.


Braden saying goodbye to Daddy's Truck


Sunday, November 9, 2014

When Your Hair Comes Back....

Our 10 year old autistic son, Braden, had a bone marrow transplant in March of 2014 to try to save his life from a secondary leukemia that was caused by the treatments to save his life from his first type of cancer, neuroblastoma. His 11 year old brother was his perfect match donor.



Our oncology teams in Philadelphia and in Kansas City have never seen a child survive this particular form of leukemia that was induced by treatments after battling neuroblastoma.

Not good.

When you go through a bone marrow transplant process your immune system is completely knocked out so you can accept the donor cells.  You have an immune system that is less than that of a fetus.

Seriously.

Since, then Braden has been in isolation. He has been unable to go into places with crowds for the past seven months. Places like school, theaters, indoor play areas, birthday parties, sports games,  out door places where he would be digging in the dirt or that have a lot of dust (fungal risk), and pretty much any place that there is a crowd of people.

And because of the autism, he hasn't been able to understand why he can't go. He can't comprehend "you have to wait several months before your immune system is going to be able to handle being around other people or around dirt because it presents a fungal risk before you can do anything fun in places where there are more than 3 people".

So we have simply told him that he can go places "when his hair come back".

 

For the past seven months, when he has wanted to go someplace that he wasn't allowed to go I would tell him that we could go, but we needed to wait until his "hair comes back".

It was going to take several weeks for his hair to grow back and it was just easier to give him that tangible way to measure when he could go do things again.

He had a wish list of things to do when his hair came back:
* Chuck E Cheese (germ enough for my skin to crawl on a good day...let alone after transplant)
* The College Basketball Experience in down town KC...his favorite place in the entire world
* School
* The Pumpkin Patch
* And the "Fun Fair"... aka..."Worlds of Fun"

It's a pretty simple list...he's not asking for much but they were things he just couldn't do until he was out of isolation.

Well....his hair is back....it's pretty thin but it's back!


And with that hair came...

Chuck E Cheese (still shuddering....)

where he played Skee Ball and Basketball...

and we rubbed his hands every ten minutes with Purell.



We made it to the College Basketball Experience and he was SO happy!!


We surprised him with a trip to the "Fun Fair"...


And we went to not just one pumpkin patch...



But TWO...

And the second one was with friends and we trudged through a muddy corn field breaking ALL the old rules about dirt...




And we added in a few bonuses like feeding koi fish by hand at a pond....


We decorated a pumpkin that had grown on the ground and was covered in dried mud before we washed it...again so illegal with the isolation rules (fungus)...



He even went on a hay ride with all the neighbors dressed as a purple minion for Halloween!


And yes, he even started fourth grade last week.


Okay...so maybe he's not as excited about the whole "doing work thing" at school as he thought he would be but he IS excited to see his friends again! ;)

When Braden went into transplant we didn't know if he would survive that process, we didn't know if the side effects from transplant would be debilitating, and...

we didn't even know if he would be here seven months later for his hair to come back.

What a huge blessing! We are grateful beyond words for every moment...

every detour...

every memory...

because it could all change tomorrow.

Braden has won all of these memories....cANCER lost every one of these days!

TAKE THAT cANCER!

HOPE!

Monday, September 29, 2014

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.