Typical East Coast Philly Pholks....

We all know the stereotype of "East Coasters"... brash, blunt, loud...

...you know...the East Coast "attitude" as portrayed on The Desperate Housewives of New Jersey and Jersey Shore.

They are rough and tough and "taulk about drinking caufee" all the time.

I'm a midwesterner...born and raised. I'm not a city girl. I grew up in the country with wide open spaces, beautiful sunsets, horses, and at least half mile before reaching another neighbor.

We've been traveling back and forth between Kansas City and Philly for over 5 years for our son's cancer treatment. He's nine now and we are just wrapping up a 2 month long stay in the city.

I'm used to everyone making eye contact, smiling, and saying hello to everyone we walk past...at the grocery store, mall, walking in the neighborhood, everywhere.

It's not like that in the city...

(city folks are laughing out loud right now in acknowledgment)

I'm a simple country mouse...living the life of a city mouse...

...with a 9 year old who is bald and wears a big pink mask to protect him from germs after a bone marrow transplant that has left him very immunosuppressed. It's quite a sight and attracts the stares of even seasoned city folks.

But while we've been here, we have learned a lot about you East Coasters, specifically the Philly Pholks with their bad ass, rough and tumble reputation.

Yes, East Coasters are direct...and blunt, (my people!! truly the yin to my yang!)

....but they are also kind...caring...giving...and...

(they'll really dislike this word)...

SWEET.

Let me tell you about a few things these Easter Coasters have done while we have been here.

There was one family who drove for about 2.5 hours to the hospital to surprise us with two huge baskets of goodies for us as a random act of kindness in celebration of a friend we have in common who would have been 41 that day. I was speechless.

Everyone at the hospital was delightful and the nurses (and some of the doctors) played basketball with Braden using the hoop we hung on his door. The child life specialist played with Braden each and every day and she even made him an official CHOP "Dr. Braden" badge. When he was dismissed, they gave him a stethoscope.

Left to right, our Neuroblastoma APN, Jennifer, Braden, our MDS APN Anne, and Dr. Olson our transplant doctor.

Rebecca...the child life specialist who played with Braden every day...we LOVE her!

Dr. Braden cleaning the baby's tubies.

When we were dismissed from the hospital and had to get a hotel to stay in for nearly a month several local foundations got together and paid for all of it. Each foundation paid for a week of our lodging and that was well over $4,000. I didn't ask any of them, one foundation called the hospital and offered and then asked a fellow foundation to join in. Unimaginable!

Ali and Joe McDonough from the Andrew McDonough B+ Foundation

Local people have reached out to bring things to us that we can't have delivered, like Braden's special yogurt and crackers. A sweet young lady even offered to drive 40 minutes one way to bring us fans when the air conditioning in the hotel went out. And one of my friend's best friends worked at the hospital and she stopped in to bring hugs, best present ever!

And a visit from my nephew and niece so I could give them hugs and meet my new baby great nephew, Carson! They've been living in Delaware for about a year and I have missed them terribly!! Isn't Carson BEAUTIFUL?? I know I'm biased...but those cheeks!!

The staff at the hotel we are staying in has been lovely to us. One of the housekeeping ladies we adore saw that I liked hot tea so she brought a beautiful tin of Chinese hot tea for me. Braden always blows her kisses and says hello to all of the folks working each time we go through the door. And they always ask him how he is doing.

It has been shocking how many people we pass in the streets stare (that's the norm) and then smile and say "Hi" to the bald little boy (which is NOT the norm)

Just yesterday, one of the men working at a sidewalk cafe outside Comcast Center was talking to Braden from across a fountain and asked him if he would like a fresh cinnamon roll.  And the police officers patrolling the streets always stop in their steps to say hello to Braden. (I thought they were supposed to be a especially tough bunch). Hmmmm....

The guys running the backhoe outside of the hotel digging some sort of trench for new pipes stop and say hello so they can talk "backhoe stuff" with Braden every time we go past them each day. Kind construction guys? That doesn't seem very East Coast.

A Kansas City friend called a friend who works with the 76'ers and they invited Braden out to the practice facility to play basketball. That's his love...his favorite thing to do in the entire world. And he got to shoot hoops with Greg Foster and some other coaches, he got to sit in the head coach's desk chair. Braden even played a game of "base-ketball". They made it up using one of the pads they use to block in practice and a basketball. It was awesome!

base-etball

We are now officially the biggest Sixers fans in history, FOREVER! 

Then one of the sweetest ladies I have ever met, Mary, even drove us back to the hotel so we didn't have to get another germy cab. WOW!

There is no way to express how excited Braden was about that hour spent with the Sixers!! Truly a dream beyond our wildest imagination!

On our walk yesterday, we saw a HUGE ladder firetruck outside the Courthouse near Logan Square and Braden was flipping out. We stopped to take a picture and the fireman who was in the back part of the truck near the ladder asked if he wanted to get inside the firetruck.

I quickly threw his mask on and they lifted him up to the main cab...and he got to honk the big horn. Yet another group that was not ranking so high on the "tough guy" scale.

As we walked away, we passed a group of homeless people who are often outside the court house. We pass them every day.  Seeing homeless people in Philly is, sadly, not unusual. The city is filled with people on the streets trying to survive. We generally just try to walk past but Braden is a social dude and always wants to say hello.

We walked past three men sitting near each other under a tree and the man in the middle yelled, "HEY!! SHORTY!!! HELLO!"  We slowed, waved, smiled, said hello, and kept walking...

and he then yelled,

"GOD BLESS YOU LITTLE MAN!"

Seriously?

A homeless man yelling "God bless you little man" to a bald 9 year old.

I cried...right there on the sidewalk in front of all of them and only narrowly managed to eek out the words, "God bless you!"

You Philly Pholks aren't nearly as tough and hardened as you want your reputation to be,

and I'm here to rat you out.

You are (take a deep breath and brace yourselves)...

nice.

In about 48 hours we are leaving Philly and heading back home after 2 months of city life.  Leaving with a little boy who feels well and has baby sprouts of hair and, to date, no sign of cancer.

Home to our friends who have been madly supportive, kind, loving and amazing for the 6.5 years we have been battling. Friends who were kind enough to send flowers to brighten our day, a box of Easter goodies for Braden (and me) and a Mother's Day package filled with cards and a big surprise, countless texts, posts, and messages. They have even sent wine and vodka. BOOM BABY! Man I am one blessed lady to have such amazing friends! :)

Heading home to daddy, big brother Zach (who donated his bone marrow to try to save his little brother),

our beta fish and kitty.

Home to our own beds, courtesy of a wonderful Kansas City businessman who is flying us home on his corporate jet because Braden cannot fly on a commercial airline right now due to the immunosuppression. Unreal!

Home...the most beautiful four letter word in the universe.

But we are leaving a place that feels a lot like home.

Thank you Philly! We will be back. In the meantime, we will miss you.

And we thank you for being so....

nice.

(get used to it...I'm going to keep using that four letter word to describe all of you "bad ass" Philly people) :)

You are beautiful!

BugZilla...

The day started with the housekeeping lady from the hotel we are staying in after Braden's bone marrow transplant telling me that she always requests to clean our room. She said she told her boss, that lady is SO clean!

I smiled with pride.

Yay me.

I do attack every surface daily with Chlorox wipes, it's important to keep things germ free because of Braden's extremely compromised immune system.

Then I got a call from a friend in the Philly area asking me if Braden would like to do a painting that could help raise funds for children with cancer.  I said we would love it and we set it up for the supplies to be delivered at 10:30 the next morning.

We've gotten into a really bad sleep pattern while in Philly for 2 months so I knew I would need to have both of us shower the night before so we would have a head start the next morning. It takes about 2 hours to get Braden going with his meds, fluids, and calorie intake.

Braden was busy with an App on his I-Pad so I decided to shower first. That is a break from our usual routine.

I warmed the water and got into the shower, shut the shower curtain and noticed a HUGE brown spot on the curtain out of the corner of my eye.

I focused my eyes on it and noticed it was moving...it's antennae...

and it was staring at me.

I think it actually said, "Boo!"

I'm a country girl. I grew up where we had rattlesnakes outside our door, under our cars, around the foundation of our house, in our barn...everywhere and as result I know that when you see a venomous enemy, you freeze and slowly back away.

You do not scream.

But I do NOT like bugs...had it been a rattlesnake, I would have been more composed.

I didn't scream, but I did inch the shower curtain back slowly...it started to move so I quickly just jumped through the small opening, over the toilet that was blocking my way...

and ran for my life to the other room.

I didn't even hesitate, I called the front desk of the hotel and explained there was a cockroach in my shower that was roughly the size of my entire hand and I was too chicken to kill it. I needed help...a brave soul who could kill it for me. The thought of the crunch that was going to happen when it was killed made me ill.

Seamus was working at the front desk and was the lucky man to answer my phone call. We've been here several weeks so I know everyone, and they know us. Seamus tried not to laugh and said he would get help "right away".

I explained to Seamus that it was roughly the size of my head and that it would be great if they could hurry.

Audible giggle...thanks Seamus.

I knew when they got to our room and saw it, they would agree that it was about 3 foot tall and would likely call animal control to retrieve it.

They wouldn't be giggling then.

I waited....

...and waited...

...and waited.

Finally, a knock at the door.

It was a HUGE man...seriously big, big dude.

I figured this would be a fair fight now...he and BugZilla would be eye to eye and my money was on the brave big dude.

I couldn't even go back in the bathroom so I stood in the doorway and pointed to which side of the shower curtain BugZilla had taken up residence.

He wasn't afraid (pssshhhhh) and went in the bathroom...

and I did the "ew ew ew ew" dance out of his way and against the hallway wall.

I wanted to be supportive...

and I wanted to be as far away as possible.

The Big Dude smacked the shower curtain hard and I could see BugZilla leap with the agility of SpiderMan to the opposite side of the shower wall.

The Big Dude got his first glimpse of BugZilla and JUMPED back and threw his hands up.

I resisted the urge to say, "I told you he was HUGE!"...

...barely.  It was SO right on the tip of my tongue.

He turned around and looked at me with wide eyes and said, "I will be right back, I need to get something."

Aha...see...even you, Mr. Big Dude, have to get something to kill it with because it's 5 foot tall and has muscles like the Incredible Hulk.

 See, I'm NOT such a wimp.

I said, "So you are going to piss him off and then leave me alone with him?"

He smiled and we both giggled.

But I wasn't kidding...

I was worried.

So I waited for him to come back with bug killing tools.

And waited...

....and waited...

....and waited.

Just as I was sure I was going to need to call down again and have them evacuate the hotel, I finally heard a knocked at the door.

I told him he didn't need to EVER knock to get back in....just come on in...

And I warned him that I was pretty sure BugZilla was planning his attack...

and that I feared for his life.

I've watched movies...

I know how it works. You see an intruder,  leave to get a knife and boom....the enemy has readied an AK-47.

But Mr. Big Dude was smart and had brought bug killer tools...

...two small boxes.

Seriously?

I said, "so your plan is to capture and relocate him?"

He laughed,

but my fear for his life was genuine.

This was a bad idea. This wasn't enough of an arsenal to take on BugZilla.

I told him my hairspray was right beside the sink if he wanted to stun him before he launched his assault.

That idea had been suggested by a wise friend on Facebook when I posted a picture of BugZilla...

(I was afraid we wouldn't survive and I wanted my friends to know what had killed us)

Mr. Big Dude walked into the bathroom but he wasn't so bold this time. He was VERY cautious...but clearly he was a Big Dude and couldn't appear to be scared out of his damn mind while protecting a mother and child from an armed 6 foot tall cockroach with wings, antennae to use like swords, and with legs hairier than mine after 2 days without shaving.

(that's pretty hairy)

I moved to the wall and assumed my supportive, yet defensive position. The door was right next to me and I could make a break for it.

Braden was still watching his movie and although I love him with every fiber of my being...if BugZilla came after us, he was on his own.

He's 9...maybe BugZilla wouldn't even notice him given that he was three times Braden's size. Perhaps, he would be viewed as a mere crumb compared to hefty momma and Mr. Big Dude.

At least that's what I hoped.

Mr. Big Dude began trying to kill BugZilla by swinging his boxes...but BugZilla countered with a direct attack and lunged after him.

Mr. Big Dude jumped back, but to his credit he got right back in there and continued fighting the good fight.

I was laughing so hard I was crying...but I was being encouraging saying, "Don't give up...you can do it...we have to kill it because it is going to get US if you don't!"

He was laughing too...but he was scared and jumping around like a little girl. Even though that was 1,000 times braver than I was at that moment.

He said, "You have a fighter here for sure!"

As his position was pushed backed further toward the bathroom door, I left my defensive/supportive position and moved to the other room...it was getting too close to my space for comfort.

I finally heard a flush.

I walked back to my hallway stand and said, "Are you sure it was dead? If you flushed it and it comes out of that toilet, I am going to lose my damn mind!"

He laughed and said that it would be on him if it did.

I looked directly in his eyes and in a very slow voice said,

"If it comes back out of the toilet, I will hunt you down and kick your ass!"

We laughed.

But I was not kidding.

He called housekeeping...the shower was cleaned and the bathmat replaced because he had apparently squished it on the bathmat.

I posted that it was dead and about the squishing and my "helpful" friends told me you never squish a cockroach because they have thousands of eggs in their stomachs and the eggs spread from the shoe across the floor and then the eggs hatch everywhere.

Other helpful friends told me to be sure to watch carefully because BugZilla may have brought friends with him to the party.

Yea...That'll help me sleep.

Not.

I posted that I had tipped Mr. Big Dude $5 for rescuing me and one of my friends responded with a congratulatory remark....

She noted that I had now officially ordered my first contract hit.

That one made me laugh out loud.

And it makes me the "BugFather....

wait "BugMother...of Philadelphia".

Back off bugs....

I'm out of five dollar bills but I have a whole roll of quarters for the laundry machines.

I will order more hits should any of you wise guys get any ideas.

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.

Heroes and HOPE...

On March 31, 2014, our ten year old son,  Zachary, arrived at the Children's Hospital of Philadelphia at about 5:30 am.

First, dad and Zach stopped by his little brother Braden's room in the bone marrow transplant unit. Braden and I were able to give them hugs, kisses, and tell Zach good luck.

Zach and daddy walked down the hallway toward the surgical center.

Zach was carrying more than his backpack filled with his blanket and i-pod touch.

He also carried with him HOPE!

Hope that his cells would carry the cure to a secondary leukemia that his little brother had been diagnosed with that was caused by the treatments to put him in a remission from his first two cancer battles with neuroblastoma.

His odds of five year survival after his neuroblastoma relapsed were less than 10%. He was in year 3 of that battle and his neuroblastoma remained in remission.

As horrific as those odds were, this new secondary leukemia was even worse. His teams in Philly and Kansas City had never seen a child beat this particular form of MDS after battling neuroblastoma.

Ever.

A bone marrow transplant was Braden's only HOPE for a cure, and an end to cancer forever. Braden's bone marrow would be killed off by high dose chemotherapy and then donor cells would be transfused into his body to try to replace his bone marrow with healthy cells that could take over and kill any remaining cells the chemo missed, and keep a vigilant watch in his body and destroy any future cancer invaders.

After an exhausting search for a bone marrow donor, there was only one match. And that match was a perfect match.

His ten year old brother, Zach.

We talked to Zach about his donation and we were very honest with him about what could happen. When a stranger donates cells, they do not meet their match until one year post transplant.

There is a very good reason.

The odds are very high that the transplant won't work and it's really tough for donors to know that their cells failed to save the person's life.

Zach is well aware of this.  He knows that his cells may not save Braden but that his cells are the only chance Braden has to live.

Without those cells, Braden would die.

And that is a lot to deal with as a ten year old brother.

Zach is very frightened of all things medical...especially needles. When he had his flu shot this year, it took several nurses and a long time. At one point he said, "Everybody just hold on for a minute! I need to breathe because I have a very big problem with large needles near my body"!

Zach faced his fears of needles and procedures. He faced his fears about "what if" and he donated his cells during a 2.5 hour procedure in which the oncologist harvested about 837 ml of bone marrow cells from Zach's back/hip.

It took about 50-75 cores of bone drilled from his body to do that. It is very painful after the procedure but Zach was tough.

After recover, Zach was able to come back to Braden's room and they were side by side while the cells were transfused into Braden's body.  A hospital clergy said a prayer and blessed the cells as they went in and after Zach said,

"that prayer proved that I was chosen for this by God mom!"

It takes a very special person to be chosen by God to try to save your brother's life. We don't know if it will work, but the most important thing is that Zach was willing to try.

Selfless...

loving...

HOPEFUL.

The night before the procedure, we named Zach's cells "Z-Force" because Zach is into all things military and his cells are like a Special Ops Battalion going into destroy the bad cells, take over, and keep watch for a lifetime and immediately destroy any insurgents. A pretty big job for any Special Ops unit...but Zach is special because his cells are super charged with LOVE and HOPE!

As the cells were transfused into Braden's body, someone noticed that the tubes actually made a heart shape.

An unplanned sign.

We expected Zach's cells to begin to engraft in Braden's body around 13-14 days after the transfusion. Today is day 7...

and they are already starting to engraft.

We still have a very long road ahead...they must engraft fully, remain engrafted, not cause extremely detrimental graft vs host disease, and keep the cancer away forever...

a long road indeed...

but it is possible...

and we are hopeful...

and I stand in awe of my two brave sons.

One the donor, one the recipient...

a perfect match.

HOPE!  For both of my heroes!

HOPE for Four....

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

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

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

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

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

to me.

"Dr. Mom" ;)

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

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

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

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

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

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

She did.

and then I cried.

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

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

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

except that I got my way.

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

It's life and death.

And you have to pick.

It's been three years since that day.

And his neuroblastoma remains in remission despite ALL odds.

TAKE THAT cANCER!

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

Really.

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

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

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

Never.

And that is terrifying and horrible.

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

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

That is amazing!!

BUT...

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

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

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

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

just to have the neuroblastoma come back.

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

and the neuroblastoma comes back.

and he dies.

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

Seriously.

How the hell do you do that?

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

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

We've seen miracles many times...

We just need one more.

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

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

And hope and pray for tomorrow.

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

HOPE!

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

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.

Kindness...

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

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

6 years...

and counting. :)

And each year I get tears as they sing.

The feeling of being cared for

and hoped for is simply beyond description.

Our friends...

neighbors...

teachers...

....adults....

children...

even some babies...

all coming together to bring joy to our sons.

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

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

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

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

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

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

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

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

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

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

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

We completely surprised her! :) It was PRICELESS!

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

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

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

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

"Kindness in words created confidence. 

Kindness in thinking creates profoundness.

Kindness in giving creates love."

--Lao Tzu

'Tis The Season...

Do something kind for someone during this season of HOPE.

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

All are infectious and all are appreciated.

Kindness is contagious.

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

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

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

You are OUR heroes!

Merry Christmas Everyone!