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 Philly...it'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!

TAKE THAT cANCER!

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:

bumpy...

scarred...

broken....

overlooked...

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.

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.

SO....now 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 Zach...my 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.

Sigh!

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)...you 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 arm....so 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!

Like.A.Boss

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: https://www.youtube.com/watch?v=P4wsVeKl9qo

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! :)

TAKE THAT cANCER!

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.

The Cheetah, The Elephant, and Prom...

Last night I couldn't sleep...worried about the results of the bone marrow test that will show if Braden's cancer is gone after his transplant. If it's not, we are in big trouble...so it's one of those things that will keep you up late at night.

I was watching the Animal Planet (seriously) and a show about African Cats came on, it was narrated by Samuel Jackson.

(every time I hear his voice is snicker because all I can think of is him narrating the book "Go The "F" To Sleep"...)  Giggling now...

The baby cubs of the lionesses and the momma cheetah were SO adorable. I just wanted to snuggle them (perhaps not the best idea but they were just so huggable)  :)

The cheetah cubs are playing in the tall grass when two male cheetah brothers approached. Samuel warned us that male cheetahs often will kill small cubs.  I wanted to turn it off, but I kept watching...hoping they would be okay.

The momma defended her babies but they got around her and started attacking her babies.

I was literally standing in front of the television, pointing my finger and telling the male cheetahs to stop it right now...and telling the babies to run..hide...and where was momma??

It looked like it was over for the babies when a HUGE momma elephant came stomping in, swinging her trunk and bellowing at the brother cheetahs to scare them away.

Now I was clapping, crying, and yelling, "Oh you GO Momma Elephant!! Kick their asses!"

After the cheetahs ran for their lives, the elephant just walked away and the babies were safe and sound...and so was the momma.

Whew...

I started thinking about how we should all be more like the momma elephant...willing to step in and help someone other than our family and friends just because they needed our assistance.

Then I remembered the Prom party that was going on when we checked into a hotel the day Braden was dismissed from the hospital's bone marrow transplant unit.  Brian was bringing the luggage into the room and he laughed and said there was a HUGE prom party in the room next to us, so it might be a long night.

We had heard them...I just didn't know it was high school kids and a prom party.

By about 8:30, it was in full swing and crazy loud. Grandpa Zach (our 11 year old) was quite perturbed and wanted to go next door and tell them to be more respectful and be quiet so people could "think".

I laughed and wished I could record it and play it for him in about 6 years for his reflection purposes. :)

They weren't bad, just loud and silly and then about 10:00, they all disappeared. Apparently, going to the actual prom itself.

I braced myself for their return and the "After Prom" party that was likely coming later that night until the wee hours of the morning.

About midnight, I heard two loud voices in the hallway and thought, "here we go..."

The boy was yelling, "Why the "F" are you crying!! QUIT crying" and the girl was sobbing yelling that he had ruined her prom night. After a long argument in the hallway, they went into the room and continued the yelling there.

Ah...young love (bats eyelashes)

I was bracing the the rest of the gang to join them and trying to go to sleep but then the girl yelled, "Why did you hit me so hard?"

That got my attention.

I began listening fairly intently (although I didn't need to try to hear them because every word they were saying was crystal clear and extremely loud). It was a 50-50 yell fest but the boy was very ugly and demeaning in how he was treating the girl. And she was crying profusely in between her verbal assaults, but she was dishing out as well. That went on for at least 30-45 minutes and I just kept listening thinking if I heard him lay hand on her or if she sounded like she was being hurt, I was going over.

They continued and at one point I heard her say "You ruined my sex life!" to which he replied "I ruined YOUR sex life?"

I shuddered and thought...

 "T.....M.....I.....Please stop!!!!"

Then I heard her say, "ouch!"

That's all it took. I sprang out of bed and told Brian was was going next door because I was worried the guy was hitting his girlfriend and I was out the door before Brian could even get out of bed.

All I could think was that if this was MY daughter, what would I want someone to do.

And part of me wanted to get her parents on the phone so I could yell at them and ask them what the hell they were thinking renting a room for the kids to have a pre-prom party in and for her and her boyfriend to spend the night.   Maybe Zach gets that whole "disapproving grandpa attitude from someone...gulp!"

I knocked (loudly) on the door. It immediately went silent inside their room. Then footsteps...bumping into the door...whispers of "it's some lady in pajamas"...and finally the door opened.

The teeny tiny teenage girl stood there in her teenier tinier dress with dried mascara that had run down her cheeks. She said, "yes?"

She looked fine..no red marks on her (and trust me, I could see most of her skin), her hair wasn't messed up and other than the mascara mess she looked fine, and that bold girl who had been screaming at her boyfriend instantly became a little girl who was scared she was in trouble.

The dude was no where to be seen but I knew he was there, hiding so I wouldn't know he was there. Apparently he has not been paying attention in school and he didn't know that sound (especially YELLING) travels. LOL!

I asked her if she was okay and she looked at me with eyes that said, "why in the world would you ask THAT" and said of course she was. I was relieved, but I wanted the dude to know that I knew exactly what was going on in the event he decided to do anything after I left.

I realized the guy wasn't going to come to the door (chicken) so I very loudly said, "I can hear EVERYTHING! I heard you asking him why he hit you so hard, I heard you say ouch. I hear him yelling at you, calling you horrible names (I told her exactly what he had called her), and both of you throwing the f-bomb at each other every other word.  And I came over because I wanted to make sure you were okay and not being hurt."

She assured me that she was fine and not hurt and apologized profusely for being so loud.  I said I wanted to see the dude and she just froze in the doorway. It was obvious he wasn't coming into the light (because again he was NOT there...duh me) so I said, "You need to cool it buddy! You need to stop now because I will come back!"

Total silence.

She apologized again and I walked back to our room. Things were much quieter but I could still hear the "talking" and I stayed up until VERY early in the morning to make sure that she was okay.

The next day, I was mad at myself for not doing more. I had been like Ms. Elephant. I simply had broken up the fight.

I had not changed the world. I had not educated anyone, I had not helped them resolve whatever they were fighting about, I had not taught them a single thing, I hadn't told the girl to stay the hell away from that guy because he was a jerk and she should NEVER allow anyone to treat her like that...I had merely broken up the argument for that night and made it known that "mom" was listening and would be back if they did it again.

Just like I do with my own sons when they argue over whose turn it is on the PlayStation.

I was disappointed with myself for not doing more.

But...I did a little.

Just like Ms. Elephant...I did something to change the path the rest of the evening was heading down.

What a different world it would be if we all did a little.  If we didn't just walk past things and we stepped up to offer a hand to someone who was hurting. I didn't do anything huge and awesome...but I was able to settle with my conscience because I had done something.

I'm blessed to be surrounded by people who do something all the time. Friends who just step up to help because it's the right thing to do. And I realized that this is bey design. I found that "post 40", I have chosen to surround myself with those types of people and let the others who are not like Momma Elephant go in their own direction, without me.

I'm fortunate to be a part of an entire herd of "Ms. Elephants".

Be like Ms. Elephant and live among a herd of them.

I promise your life will be blessed as a result!

And I have now added "snuggle a baby tiger or cheetah" to my bucket list.

Hate...

Hate is the only four letter word I refuse to use.

Ever.

Others flow, far to freely, on too many occasions.

So why draw the line at the word hate?  What's so bad about that particular word?

Today, Braden had a surgical procedure to remove his Hickman central line...it is a line that ran through his veins to deliver his chemotherapy and then drugs to counteract the damage that the chemo did to his body.

It is a rather medieval looking device with long tubes sticking out of his chest that have caps on them to connect to the tubes from the drugs so they can be pumped through his body.

It's nice that it's gone..it means he is getting better and no longer needs it. We may actually break out of the bone marrow transplant unit at the end of the week,

a full month earlier than they predicted his earliest dismissal day from the hospital would happen.

TAKE THAT cANCER!

They also did a bone marrow aspirate to check his bone marrow for any signs of remaining MDS cells, that's the pre-leukemia Braden has that was caused by the treatments to save his life from relapsing neuroblastoma.

His body is now fueled by his 11 year old brother's donated bone marrow cells, and he is kicking butt and taking names with this bone marrow transplant,

But now it gets real. Now we wait for two days to find out if the treatment he just went through has killed the cancer cells....

...and my stomach is in knots because if it's not gone...

...I can't even type it,

Let alone think it.

It simply has to be gone.

Braden has been fighting cancer for 6.5 years...

and he's 9 years old.

He has no idea what life is like when you are not in continual treatment. He has autism and doesn't even know he has cancer, so he just fights...

and lives life to the fullest every day with joy and love.

As he was still in a deep sleep from sedation, he had one single tear dripping from his eye and it broke my heart in a million pieces.

Braden never cries about his cancer, he hasn't cried ONCE during his bone marrow transplant...to the contrary...

he has been shooting basketball hoops, playing, and painting beautiful pictures.

But it does wear on him....and that tear showed it.

I often hear people tell me how they hate cancer because of what it has done to them or to someone they love.

And this tear completely ripped my heart out. Just another time cancer was hurting my baby.

But I will never say that I hate cancer.

The reason is simple.

Hate comes from an ugly, evil place.

Hate is the reason that a grandfather, his 14 year old grandson, and a woman were just shot and killed in my hometown.

A fourteen year old beautiful boy who had his entire life ahead of him. A grandfather who was lovingly taking him to try out to be a part of a singing group, a dream of his. A woman who was making her weekly visit to her mother at a retirement village.

Gunned down randomly by a crazy man yelling "Heil Hitler" as they placed him in the police car.

You see, they were killed at two different Jewish locations, likely because he believed they were Jewish.

THAT is hate...

THAT is evil...

And that is simply horrific...

and as much as I actively dislike what cancer has done to our son and our family, I simply REFUSE to allow this disease to make me hate.

I refuse allow cancer to conquer me.

I refuse to allow it to make me hate.

cANCER, evil and hatred will never receive my soul.

As much as I would have chosen another path for our son, it is the path he has had to walk. I would give my life to change that for him, but I cannot.

cANCER has blessed us in so many ways. We have been shown how much love, support, compassion and true selflessness is in the world. People have shown us all of that with open arms. As they did when the community showed up to welcome Zach home after he arrived from donating his bone marrow to Braden to try to save his life.

THAT is love.

THAT is goodness.

So in a very twisted turn of events, cANCER has brought beauty and grace to our lives by showing us exactly how much more good there is in the world than evil.

My heart breaks because of our son's one single tear dripping from his eye.

I allow myself to feel sadness and fear because I am human,

but I get back up and I fight every single day because I refuse to allow hate in my life in any way shape or form.

Hate is the worst four letter word in the world because it consumes souls and allows evil to reign and spread.

We conquer hatred through loving acts and words, and through faith.

God has Braden in His hands and I trust Him to care for him and that far surpasses hatred and evil.

"Lord, make me an instrument of thy peace. Where there is hatred, let me sow love."

--Francis of Assisi

Amen.

Tigers Are Real...

This is Braden...and "First Tiger".

First Tiger is Braden's stuffed tiger.

Braden is 9 and First Tiger is almost 5 years old according to all "got ya' date" estimates.

We found First Tiger at the Kansas City Airport's gift shop on one of our trips to Philadelphia to visit our amazing neuroblastoma team.

Braden was bald...and going through some really big treatments...and it was believed he wasn't going to survive. We had to travel to Philly frequently in those days and flying and all the airport hustle and rush are not really that conducive to happiness for a child with autism. 

Those trips were pretty brutal and usually ended with me apologizing to about every person on the plane...beginning with the stewardesses. 

The bald head usually lent itself to increased understanding from the beginning, but those trips were still worthy of apologies.

Braden spied First Tiger while I was getting dramamine...a really bad item for me to forget for my own sake...

and for the sake of those near me.

He ran to First Tiger and grabbed him and said, "WOOK.....A TIGER!!!!"

And he squeezed him and held onto him for a very long time.  Braden isn't really a fan of stuffed animals...it's the autism factor at work so it's pretty easy to get him to put them back down.

I gave the tiger a hug and said how cute he was an then asked Braden to put him back in the bin. 

Braden picked him up and carried him to the cash register. 

Apparently, he had a different plan for the tiger.

I'm a sucker....

I never could predict when the sensory overload outburst was going to happen.  All I knew was that it was coming...and probably would occur at multiple times. 

So when he wanted "Tiger" as was his name that was initially given to him, I said yes. 

We made it onto the plane and to our seats. Braden pulled down the tray table after he put on his seat belt (buckling it initially was not a problem...it was the "keeping it buckled after buckling it initially" part that was the problem).  The tray table also presented quite a challenge because of that "gotta be in the full upright position" for take off rule.

Braden was not a fan of that rule.  

Or of the "stow your portable electronics" rule.

The stewardess didn't always get that electronics rule deal on take off, but upon landing time, almost every one came by to tell me it was okay for him to keep watching his DVD player and to not worry about shutting it off. ;)  

We all learn. 

And as I was trying to figure out how I could distract Braden so I could get the tray table up and keep the seatbelt buckled without meltdown #1 occurring, it hit me....Tiger could help!  

Tigers don't talk...and the more words you use when Braden is starting to meltdown, the worse it's going to be...

I picked up Tiger and pretended he was looking out the window, tiger didn't talk but I moved him like a puppet and tilted his head different ways in a kind of non-verbal language...and Braden was cracking UP!  Tiger took pictures with my phone, tickled Braden, licked his face, kissed him, climbed the walls, 

anything I could think of to distract him for what seemed like four hours to taxi to the runway.

Tiger was talking to Braden...

That was enough distraction for me to quietly shut the tray table and keep him from thinking about the seat belt until the engines roared for take off.

Once we could climb to 10,000 feet and turn the DVD player back on, we were usually good for a bit.

And Tiger continued to distract Braden through the entire flight. It wasn't a perfect flight, but it was FAR better than normal.

I think I only had to apologize to half the plane that day. 

Over time, Tiger helped Braden become an amazing traveler.  Now he doesn't have a single issue and people often tell him what a good job he did!  

They all notice him though because as we load, he walks down the aisle and says to every person, "Oh Hi...how are you? We are going on the plane today and it's going to be FUN! I'm SO exciting!!" (he means excited but his face shows what he means)  

And after we land, he claps and loudly yells, "GOOD JOB AIRPLANE!  YOU DID IT!!!" 

Every.Single.Time.

First Tiger has been Braden's best tiger since that moment.  He sleeps with him every night, he goes to every clinic appointment, he travels to school with him every morning, and is there every afternoon when he gets home from school. 

First Tiger is Braden's "woobie"...remember the movie Mr. Mom? 

And he has an awful lot of lovin' rubbed into him. 

He bears the wear marks of millions of hugs and squeezes.

So much so, I was a little worried about First Tiger surviving over time.

A few months after we got Tiger, he found another tiger at the same airport...I got to wondering what if First Tiger didn't hold together?  So we bought it and now, we had a back up.

And that is when Tiger's name changed to "First Tiger"...and the new guy became...

"Second Tiger"

They look alike but Braden can tell them apart in a completely dark room in the middle of the night when he reaches over and accidentally grabs Second Tiger instead of First Tiger...

And he wakes up the entire house with, 

"WHERE'S MY FIRST TIGER?!!!"

As you may have guessed, Second Tiger did not get held back in storage...once Braden saw him, he simply joined forces with First Tiger and they became a pair.

Then came Third Tiger...a rare White Tiger. 

Now we haul around all three tigers everywhere we go. ;)

It means we carry an extra backpack the entire time we are someplace other than home so the tigers can be with us at all times.  Braden hauls them unless his port is accessed and at that point, I carry them so he doesn't dislodge the needle.

His tigers are there while taxying to the runway...

During take off and landing...

and during turbulence, which Braden actually giggles and shouts for because it's "A ROLLER COASTER MOM"...

That is why we must have Dramamine...Mom isn't a fan of coasters.

And he hugs them when he begins to get anxious....

it helps calm him...

and that allows him to be "just a kid on a plane"

They sleep with him on the plane...and every now and then, he does sleep on the plane which is a huge accomplishment! 

That would have never happened without his tigers.

They come with us to the hospital and are with him during every event for scans.  

They are there during the nuclear injection into his tubies which will light up on scans showing any neuroblastoma cells...

and they listen to Braden emphatically tell the injection to "not light up on ANYTHING!"...

because that would mean the neuroblastoma is back.

They were with Braden during his chemotherapy shots we gave him that night in the hotel. They slept with him and he woke up with First Tiger held tightly in his arms, ready for scan day.

And they went in the scan machine with him. They have to be by his head during the injection to help him relax in the hour long scan in which he must remain motionless.

And First Tiger and Second Tiger are always snuggled on each side of his head with white tiger along the top. Mom's job is to make sure the tiger's paws don't dangle off and shut down the machine while I stroke his forehead and tell him how much I love him.

Who would have thought that a stuffed tiger could bring so much comfort to a child with autism and cancer.

His tigers aren't just stuffed animals, 

they are family.  

They are real people to him.

Margery Williams described it best in the book The Velveteen Rabbit...

“Real isn’t how you are made,” said the Skin Horse. 

“It’s a thing that happens to you. 

When a child loves you for a long, long time, not just to play with, 

but REALLY loves you, 

then you become Real.”

And Braden loves his tigers...

THAT much.