Trust....

A dear friend sent me a story several years ago about trust being similar to riding a tandem bike with God. He is steering the bike and we are on the back pedaling to keep the bike moving forward.  We have to trust that wherever God steers us is the place we are supposed to go, and we ought to enjoy the view along the way because He's "got" it.

Easy to say; hard to put into action.

I am a control freak and I leave little to chance...I am a "driver" not a "peddle pusher".

It requires trust to be able to peddle, and not steer. And that is not my strength.

Many people have told me "God only gives us what we can handle so he must really trust you" or "God gives his hardest battles to his strongest soldiers so God is showing you His trust".

I also hear people say they believe that God gives us trials so we can give ourselves completely to His will and trust Him with all of our heart.  He gives us these trials and hard times to teach us to come to His open arms to seek comfort and to trust in Him.

While all of these statements/ideas are supposed to be comforting and supportive, they are not.

What I hear in these messages is that some believe that God is giving us horrible things to test our faith and to give us the opportunity to trust Him completely. And that hurts my heart.

I just don't think it works that way with God.

(Perhaps it works that way with some humans, but not God)

When Braden was first diagnosed, I thought God had abandoned me. I assumed I was being punished or He was angry with me.

But, when I stepped onto the oncology floor for the first time and I looked into the eyes of the children battling cancer, I immediately knew that this was not something that God was responsible for...

...the God I believe in is loving,  kind and forgiving. NOT the giver of pain and suffering.

I think that's the "other guy's" specialty.

I had peace in my heart at that moment, and I have carried that peace with me ever since but my trust in God is often tested. This week has been a particularly tough one.

I started writing this blog while one of our sweet teenage friends was dying with Ewings Sarcoma.  Kori is now forever 18 and she was a fighter, a true fighter, with a heart as big as the entire universe.  She is a beautiful soul and she lives on here on Earth in so many ways,

but her parents can't hold her anymore.

They can't hug her, touch her, comfort her, and dream of her future.  Those things are lost and writing a blog about trust while holding that on your heart was tough for me to do, so I stopped and didn't finish writing it.

In the meantime, we were waiting for the results of a bone marrow biopsy for Braden and I didn't have a good feeling about what these results would say.  Angel whispers were telling me to be concerned.  His counts had been progressively getting lower and I was worried it was a sign of disease in his bone marrow making it hard for it to make healthy cells to grow.

Then there was the non-scientific sign. When Braden was in treatment, he needed me to be right beside him every minute with me touching him all the time.  I couldn't even get up to go to the bathroom without having a nurse sit with him while I hurried as fast as I could because he was crying out for me.

Every time, something has been going on with Braden and his cANCER has been progressing, Braden has needed to be touching me all night long while he sleeps.  And his arms, hand, or foot had been on me all night long for awhile.

I knew....I just knew his treatment induced leukemia was progressing. I couldn't even say it or make eye contact with those that asked me what my gut was telling me about the results.

We got the results of the biopsy and they were not what we wanted to hear. The treatment induced leukemia is progressing again.

Once again, his cancer cells had found a way to outsmart the chemotherapy we have been giving him to keep them quiet...and kill them.

Now he has to go into transplant which is terrifying. This marks the beginning of something, it will either result in his death or cure. The hospital teams we work with have never seen a child survive for 5 years after treatment induced mds following neuroblastoma.

Never.

They are leaders in the field and they have never seen it.

And I am not ready to go into transplant and start what the doctors believe is the beginning of saying goodbye to our son.

Each time I have been able to post something positive about Braden's cancer results, I often hear "God is Good!" in celebration.

Yes, He is.

But, He is good all the time.

Trust is knowing that He is good, kind, loving, and our grace and salvation even when the answer is not what we want it to be.  Period!

Trust is knowing that if the answer to our prayers is not what we asked for, or hoped for, or wanted, it is still the right answer.

When I don't receive the answer that I want, it doesn't mean my prayers weren't answered!

God knows and sees things that I cannot and he steers the bike accordingly.  I am called to trust Him to guide us to the right answer, not to my hope.

It's like when I prayed that God would take care of our daughter Miranda and keep her safe and comfortable even if I had to say goodbye to her because I wanted her to not be in pain because of my wish to keep her here. A few hours later, Miranda was with Him in Heaven and not on Earth suffering. Watching Miranda die in my arms was the hardest thing I have ever done, but it doesn't mean our prayers were not answered.

God saved her, just not the way I wanted her to be saved.  But it doesn't mean my prayers weren't answered and that He didn't wrap His loving arms around her and save her from evil.

Sometimes parents have to say no even when it hurts because they know more than their children about how things work. I think it's that way with God, but we can be spoiled brats because we want what we want when we want it. And I really wanted Miranda to be with us and I really want Braden to be with us.

I didn't get what I wanted with Miranda, and I may not get what I want with Braden and that crushes my soul completely. The sadness and fear I feel as a result of losing Miranda and possibly losing Braden is more than I could ever describe. It frightens and saddens me to the depths of my being.

But...I must trust God to save him just as I trusted God to save Miranda....no matter what the answer is.

God is in the business of loving and caring for us.  He loves Braden even more than we do, which is hard to imagine because we love him with every ounce of us.

He will save him whether it is on Earth or in Heaven, but for the record,  I'm going to fight like with everything I have to make his cure occur while on Earth. God gave us minds and free will to do something with them, and those two things are the reason he has remained with us for 6 years.

We aren't stopping now.

We have a glimmer of hope...it's just enough to give us the courage we need to fight.

When I went to bed on Valentines Day, the day we got the news the leukemia was progressing, I couldn't sleep so I did what I often do when I just need to hear from God. I closed my eyes, opened my bible, pointed to a spot on the page and then read.

And this is what I found:

     "Look to the Lord and strength
Seek his face always.

     Remember the wonders He has done
His miracles and the judgments he pronounced."
                                                       Psalm 105

I trust. And I know that God is bigger than cANCER.

TAKE THAT cANCER!

What's For Dinner....

I'm going to lose my membership card in the "Girl's Club" for this post because at our last secret meeting (at the pub), we all agreed that we would keep this information top secret.

But I'm risking it...for one and only one reason...

to be clear and to try to help men everywhere live happy, healthy lives...

with no ambiguity.

I know sometimes men think women talk in code and we have secret messages behind our words.  Today, I offer clarity on one little issue, asking your significant other to bring dinner home.

First, the background info you need from which to frame this whole scenario.  Part of what I do each day is plan and prepare meals for my family.

And didn't used to like cooking but now I love to cook. I watch Food Network every chance I get...

which we all know makes you a real chef.

I have also taken a few cooking classes at a culinary institute and as a result....

I even get my knives professionally sharpened now....so it's pretty obvious that I'm "the real deal".

Okay, I admit it, I'm no "chef"...

not everything I make is even edible, and I often take the culinary path of least resistance, but I do enjoy cooking and it usually takes a good chunk of time.

Every day.

I shop for the groceries, chop everything, cook the food, serve it and then clean up the kitchen and do the dishes.

Oh the horror! POOOR OVERWORKED ME!  ;)

Actually, I like doing it.  It's "normal" and a stable, predictable, behavior that I yearned to do while spending months in the hospital and unable to do "everyday" things like this. Having the chance to be at home to do this is a gift.

And I think it's fun!

Shhhh....don't tell the hubby that part because that takes away a lot of currency I can cash in later for things like fixing broken stuff around the house.

But there is one part of the job that I do NOT enjoy and that is figuring out what we are going to have for dinner each night.

UGHHHH!!!

In order to be a meal planning whiz kid, you have to consider many factors...

like how many nights this week have we had "Taco Tuesday?"

And are there any frozen pizzas left?

It's so exhausting I often need a glass of wine after I'm finished with the event because I have pushed myself to my physical, emotional, and mental limits...

(sangria is good too).

But there are some days that I'm just tired of shopping, chopping, cooking, serving, and cleaning up.

And on those days, I call Brian and ask him if he will stop at a restaurant or drive thru and bring dinner home.

He always obliges and says "sure". He's always willing to bring something home...no judgment about me not cooking or being upset about having to make a stop.

But....he always asks the one question that he should not ask...

"what do you want me to bring home?"

My answer is always the same,

"I don't care, you pick."

To which he inevitably sighs...

So I sigh too...

...louder.

Then we begin the "discussion" of what he can bring home with me continuing to say, slower each time...

"I don't care what you bring home!"

I'm pretty sure he thinks that either I'm trying to trick him and there's some catch, or that it is part of the "Woman Code" and he's supposed to keep asking me to get me to crack and tell him what the code really means.

So in an attempt to be perfectly clear and avoid any more sighs and discussions about what to bring home for dinner after I say, "I don't care" four million times,  I am going to be completely transparent and reveal the woman code for what those three little words (I don't care) mean when discussing what to bring home for dinner.

Here goes...hold on to your hat and prepare for your mind to be blown with the code translation.

This is BIG stuff!

Nobel Peace Prize Award kind of stuff!

Seriously!

When I call and ask my hubby to bring something home for dinner,

it's because I am tired of cooking and doing dishes...

and figuring out what the hell to have for dinner every meal!!!

SO....when I say, "I don't care what you bring home for dinner", what I'm really trying to say through all the innuendos and indirect messages is...

(GET READY FOR IT....)

"I don't care what you bring home for dinner"...

as long as I don't have to cook, clean and  plan it for one night!

I want a night off...and that night off includes a break from meal planning duty.

I don't want to think about what to have, I don't want to clean it up, I don't want to put the leftovers in the fridge...

Night

O...

F....

F!!

 BOOOOM!!!

(that was the sound of minds around the world being blown as the code was cracked)

Club Sisters...I know I took the oath of secrecy that  I would never decode those words, I have failed you.

It's a good thing I don't work for the CIA.

And as an added code cracking bonus dear significant others,

when you don't even get us a card for Valentines Day and we smile and tell you "it's no big deal, don't worry about it"

as we hand you yours...

The decoded meaning is...

"sleep with one eye open."

BOOM!

(again)

How do you sleep at night...

I don't sleep much and when I do, it's not well.  No parent who has a child with cancer does.

The night before scans or a bone marrow biopsy/aspiration is one of those nights that is extremely difficult to get any rest.

Braden's autism gives us the blessing of him not knowing what he faces the next day. Honestly, that really is a blessing because he doesn't lose any sleep.  

Each time we take him for treatments or procedures that are going to be painful, I feel horrible. 

With that innocence and trust he places in us to keep him safe and happy, it weighs heavily on our hearts that we have to take him to the hospital to allow painful things to be done to him to try to help him survive.

Another thing that every parent of a child faces.

It's tough on the heart...

Braden just had a bone marrow biopsy and aspiration and those are never fun. Most children with cancer have to endure these, some fairly frequently. As of today, Braden has them every three months.

Let me show you what these brave babies go through.

First, this is the child we enter with...full of giggles and laughter and energy...

Braden does not go under full anesthesia. Instead, we do his bone marrow biopsy and aspiration in an exam room in the clinic under "conscious sedation".  Yes, he could be put into a full, deep sleep but when they do that, they have to run a breathing tube and that isn't always good in Braden's world as far as recovery.

He doesn't feel any pain during this conscious sedation, but he is aware that something is happening and he can feel the pressure.

He does not enjoy the experience and once we put on his pulse oxygen monitor, he realizes he is going to have to "lay on his tummy today" he tries very hard to convince us that we don't need to do it.

We also give him some versed which makes it so he doesn't remember what happens during the procedure...

I would like some too. 

I always stay in the room and help hold him down. Yes, he tries to get up and he frequently tell us he wants to go home now....

and that he does NOT want a bandaid.

He is EXTREMELY emphatic about that!

I stay by his head (with his tigers) and put my body weight across his shoulders and kiss him and tell him how brave he is while Dr. Neville goes about the business of the biopsy and aspiration.

The puncture is done with this treat...

See that long, thick needle? It has a core...the top is what you think it is...it's a screw that is twisted and turned into his his/back to create a hole in the bone.

Read that part again...HOLE IN THE BONE....

sounds pleasant doesn't it?

Now, imagine holding your child down while he is telling you he wants to go home...PWEASE MOM while they insert this and screw it through his skin into his bone.

Next, she uses this knife to core out a piece of bone marrow...

I will admit that I never watch the actual process...it's hard to see from my location and I'm focused on keeping him from sitting straight up and keeping him calm.

These are other tools of the trade...

If you are squeamish about needles and medical things, you are probably cringing right now. 

I'm not squeamish, but I cringe at the thought of this being shoved into my baby.

And doing it is not a choice, if we want him to have a chance to live.

And that....is messed up...

way the hell messed up!

He always does a great job and today he loudly said, "NO BANDAID" after Dr. Neville did the aspirate.  So as Dr. Neville put the bandaid on and he once again reminded her "no bandaid", without skipping a beat she told him that "Angela did it", she's our nurse. We all busted out laughing as poor Angela said, "Heyyyyy"! :)

Funny how with all of that tray of torture tools, he is most worried about bandaids...

(but he really does dislike bandaids)

After the procedure, Dr. Neville gave him lots of hugs and snuggles and he started to wake up.

We have to force him to lay down and chill because he tries to get right up and run around.  

He's 100% courage and 0% balance on all of those sedatives.  

This is the face we leave the hospital with...

Once home, we snuggle...

And take silly selfies per his request...

Kids with cANCER are brave....brave beyond the capacity of explanation of the word brave...

Parents of kids with cANCER follow their kids example of bravery...

and that is why I stay in the room while they do this procedure.

That is why I help hold him down...and talk to him...and kiss him...while they jab those horrible long needles and knives into his back and bones...

because I want to be the one there for him when he cries out to go home...

and not have a bandaid.

It's also why I don't sleep at night.

Someday in the future, people will look back at this horrific procedure and its tools and wonder why we ever had to do it that way...

sort of like how we look at leaching now.

I pray for that day...I work for that day...and I HOPE...

"My" kids...

Once upon a time, I was an elementary school teacher.

Then an assistant middle school principal.

Then an elementary school principal.

And finally, a director of human resources....

then I had to leave my career when Braden was diagnosed with cANCER.

The best and hardest career decision I ever made. I loved my career, but my priority is my children and Braden needed me 24/7/365.

I have been privileged to have thousands of "kids" in my life because of my career experiences.  First, with the 20 some in my classroom and then with the hundreds as a principal.

Moving to HR was a tough one for me because I had to leave my kids so I had more hours to take care of my biological children. Principal hours are very long with numerous evenings back at school each week. Braden had 5 evening therapies a night to help with his autism and I simply couldn't do it all.

It was a heartbreaking choice, but I also loved working in HR.  Some of my kids would actually come visit me at our district offices...those were the best days ever!

And...I really think of  them as "my kids".  All 20 something in my classrooms and the hundreds in our school.

They changed made me smile, laugh,

bang my head into the wall....

There was never a dull moment and never a day that was the same as the last. It was challenging and fun and those kids filled my life with joy.

There was never a time that I was in the hallway that I wasn't nearly tackled with hugs and greeted with screams of "MRS HOFEN!"

That wasn't always perfect for teachers who were trying to get their kids to walk quietly in the hallway...

...Oops.

Each and every day my staff and I made it a point to check on my kids that were struggling for one reason or another. Sometimes it was the shy kiddo who had no friends, sometimes the "un-shy" kiddo who was always in trouble...

and as a result, my kids became "my kids".

I wasn't always good at it, there were kids that slipped between my fingers that I wasn't able to reach. I still think about those children (who are now grown ups making their way in the world).

Those were the kids I thought about every night when I got home, I worried about them, I was proud of them, I tried to figure out other ways to help them.

So did my staff.

There were also a lot of fun times. Frequently, I would have a child in the office who was explaining what they had done to get sent to me. I would listen to their explanations and then with a very serious face tell them that I would be right back but in the meantime, they needed to think about what they had done.

I would then step out of my office and into the work room and bust out laughing!!

Kids do and say the funniest things.

Like the time two kindergarten boys decided to go into the bathroom and shut off the light and see if they could hit the toilet in the dark from the furthest wall.

I laughed hardest when I called the one of the dads (who was also ornery) to explain the situation. I couldn't even speak at one point because I was laughing so hard.

I think he said made some reference about Ghost Busters and "streams crossing".

But the five year old "fountain" never knew I thought it was funny. It was tough to hide my grin.

Or the time a first grader decided to cut his bangs with his scissors during class. His teacher sent him to me. I figured the damage was pretty much already done and he had his own consequence of walking around with really short, crooked bangs. SO...

I asked him if he had been to "hair cutter school".  He said no and I told him that he was VERY welcome to cut his own hair anytime, but he needed to go to hair cutter school first.

He shook his head and said okay and happily trotted back to class.

His teacher wasn't quite as amused as I was with my "witty" response. :)  She was good with it later on...after I explained.

I had a student who was really struggling with behavior who would cuss like a sailor when he was in trouble. Our psych and I would tell him that he was welcome to be mad, but if he cussed, he would have to stay it the office all day with me AGAIN and that wasn't his favorite thing to do. So one day when he was in trouble, he said...

"Just shove it up your........

desk drawer".

That one required GREAT restraint to not laugh out loud.

And we were SO proud of him for controlling his words!!!!

Then there was one sugar who was frequently in my office, for days, because he simply refused to work.  He was so very smart, but so smart that he saw no need to do things he already knew. I agreed completely but told him it was about complying with what he was asked to do and that is was not about the work (and then we all worked to get him things to challenge him).

He would spend days with me...and to be honest, neither one of us really disliked it. That boy is still my heart, I love him SO much, even though he is all grown up and in the nuclear engineering program in the Navy now.

Using his brilliant mind and...

Complying.

One of my students could not handle fire drills or tornado drills, they made her absolutely terrified so she became my helper and walked the building to check classrooms and hallways with me. After I would radio in the "all clear" she would radio it in as well.

She is now one of the most confident, independent, caring, loving, wonderful college students in the world.

Middle school kids rarely say anything in the morning. Each day during morning drop off, I would happily say "GOOD MORNING!" to every single adolescent that got out of a car or crossed the street.

IF I was lucky, I would get an "mmmm" syllable back from them.

Except for one eighth grader, he said "good morning" to me every day. I was at a Chamber of Commerce meeting several months ago, and he was now working for the Chamber...still as happy and kind as ever!  He made my day each and every morning.

I love that I occasionally get to watch my kids grow up.  Social networking helps.

They graduate high school, go to college or find careers, some get married, and now they are even having families of their own.

One of my former students who lost her mom to cancer when she was very young just had a baby last week.

I cried tears of happiness for her.  She is going to be SUCH a great mom!

Thanks to social networking, I can stay in touch with my kids and celebrate with them and feel them go through struggles and tough times.  I can remind them that I love them, tell them that they are always in my heart and I'm proud of them!

Educators have the very unique blessing of having hundreds and sometimes thousands of kids.

My kids have blessed me with their gifts of humor, a little ornery, and a whole lot of love.

How fortunate have I been to have had a career that allowed me the blessing of watching the people I spent my days with grow and become the unique and wonderful adults they are today.

That is a gift that you can never adequately thank someone for...

To all my kids....thank you for allowing me to be a part of your lives.

Keep learning and growing...

and thank you for teaching me along the way!

Doodie...

Braden got an "Octopus Carwash" from Santa for Christmas.

What is an octopus carwash, you might ask....

Well...when we go through one of the many car washes he loves, it has big long dangling ribbons of cloth...or something...and they go back and forth and rub the car clean.

And to Braden, they look like an octopus. :)

He asked Santa for an octopus carwash this year and by golly if the jolly old elf didn't find him one.

(Rumor is you can find them on Amazon as well as at the North Pole)  :)

And it even goes in the bathtub...and has a track that moves the car along as you squirt water on the car and it rolls through sponge brushes and the octopus.

Braden was REALLY happy about this toy and he was enjoying playing with it in a tub full of bubbles for the second time ever...

when I heard a loud scream...

"HELP MOM!!!! SOMETHING'S IN THE TUB!"

So I went sprinting into the bathroom to find him standing, bare naked with a thick coating of bubbles dripping down his legs (he likes a lot of Mr. Bubble in his tubble)...

...nearly climbing up the walls at the end of the tub to get away from whatever was in the tub.

And then he said it.

"...THERE'S POO IN THE TUB!"

Oh Crap.

I know there are mommies and daddies out there that get this...when kids are in the tub when they are little, sometimes it just happens...

Nurses call it a "sitz bath"

and it sure is a crappy happening.

My first thought was to call out to my husband for help.

(I could get HIM to deal with it and I would take care of a trembling Braden...thereby getting out of the crappiest part of this emergency).

I didn't say I was proud of it...

I was just being "logical".

But, he had left moments earlier to go to the store and get waffle mix because I had a craving for waffles for lunch.

Good guy...

but it was extremely unfortunate timing for him to do something really nice for me.

No pawning it off on him...  UGH!

Oh don't pretend like you wouldn't try to get someone else to do it... LOL!

Time to suck it up and

"mom up"!

Crap!

I so didn't wanna!!

SO I pulled Braden out of the tub and wrapped a towel around him.

No need moving him far because once the tub was cleaned he would require an immediate shower...

frankly, I wanted one right then too...and I hadn't even found anything yet.

He stood outside the tub being especially helpful and pointing to where the poo was and saying repeatedly, "THE POO IS IN THE TUB....THAT'S YUCKY!"

I agreed completely.

So, I began to part the bubbles to locate the offender.

My mind flashed to Bill Murray in CaddyShack locating the "doodie" while cleaning the pool and then eating the Baby Ruth candy bar. "It's no big deal!" Come on 1980's friends...you remember! :)

But it seemed like a kinda big deal...the entire time I was cringing and putting my hand on the very top of the bubbles while moving them slowly so I wouldn't touch it.

And inside my head I was saying, "EW EW EW EW EW EW!"

I didn't want to freak Braden out any more than he already was...he was nearly hysterical...I had to stay calm and breathe...

Okay...so I didn't want to breathe...

for obvious reasons.

Braden had his hand on my back while looking over my shoulder profusely apologizing, "I sorry mom....get the poo pwease...hurry mommy...get it!"

Mommy was trying...

and where the hell was my husband,

it couldn't take that long to get waffle mix from the store!!!

Oh sure it had only been like 30 seconds,

but it seemed a LOT longer!

And then "it" floated to the top of the bubbles.

It took all my courage to pick it up....

...It was a bandaid that had formerly been on his finger.

I pulled it out and showed it to Braden who said, "Ohhhhhhhh....a bandaid!"

So he hopped back into the tub and began playing in the water again.

And I washed my hands profusely...just felt the need...

and then headed downstairs for a BIG drink of orange juice...

with a lot of champagne mixed in.

A potentially crappy moment that turned out to simply be a case of mistaken identity.

Mommy jobs are usually interesting, surprising, funny, ironic and...

they are always memorable!

No doodie.

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.