Detour in a bra, down a runway...

I just walked down a 50 foot runway, in front of over 500 people… in a bra.

No kidding!

It was for an event called Art Bra and this was the third year they have done this fundraiser. Some of my very best friends had been models and were organizers.  Breast cancer survivors wear the bras on the runway which is awesome and I had been asked before and graciously denied that request. (secretly thinking…there is NO WAY I would wear a bra in front of 500 plus people…not because of the breast cancer, just because it’s a bra in front of 500 plus people!) LOL!!

In January, a very sweet lady called and asked me if I would do it.  She told me that one of my besties had given her my name and number. Initially, I said no. Then she told me that the proceeds went to help under and un-insured breast cancer patients. Pretty important stuff!

Then she said that we could design our own bra and it could be a childhood cancer bra.

AND…it could cover as much of me as I wanted covered.

I said yes!

Then I hung up the phone and said, “what the hell did I just do??”

Immediately, if not sooner, J I began a workout regime to lose pounds and tone up.  I really didn’t think I was that vain, but I was wrong. LOL!  I worked out 5 days a week until my cardio workout burned 600 calories or more, and then I lifted weights. Two of my very good friends helped me with diet and workout plans. I didn’t join a gym, I didn’t “do” a program, I just worked out at home and I worked out hard.

Accountability is the key…and walking down a runway in a bra was certain reason to be accountable…it was my coach and babysitter.  I ate the right carbs, protein (YUCK), fruit, veggies, all whole foods, and made sure I got fat in my diet…really…and I gave up sugar (for the most part, I wasn’t a fanatic).

I was working out with the Evil Twister Chick and her DVD workouts…she pissed me off.  I couldn’t do them without falling so she went back on the shelf and I did interval training and walked…fast.

I lost ten pounds…still have 5 to go.  And I have so much more energy than I could ever explain. I feel 10 years younger!  Unfortunately, my wrinkles and turkey wattle did not follow suit.

Damn.

Friday, May 3 came and I walked into the downtown Kansas City Airport Museum and saw this absolutely stunning venue with chandeliers and white curtains and beautiful seating…

And a 50 foot white runway.All I could think was “Oh dear Lord…WHAT HAVE I DONE!?”

Largely due to my MS, my balance SUCKS…and I have never been coordinated and graceful…but I was supposed to walk down this runway and smile and be all model-like and swooshy and glam….

I knew that wasn’t going to happen…it’s not me. Silly, irreverent, and crazy…that’s more me!!

My girlfriends were in the audience and they promised to raise the roof with noise!!  I knew that would do the trick for calming my nerves! I was relying on them!

They did our hair and makeup and off we went. My bra was in the live auction, which meant I got the added perk of extra time on stage to strut my stuff. 

Now let’s stop there for a minute and talk about “strut” and “stuff”.

BWAHHAHHHAAAHHHAAAAA…strut and stuff!!!

I don’t strut and I don’t have stuff…well I do have some stuff. My “girls” are beautiful. I love them!! They are perky and plump. Silicone ROCKS!!!But I’m a 47 year old, mom of two, former elementary school Principal who wears sweats and jeans and t-shirts 99.9% of the time.

I don’t routinely show my cleavage to 500 people while walking down a runway…in a bra!

Again…”WHAT HAVE I DONE?”

The bras in front of me were auctioning for like $5000 each!! HOLY SCHMOLY!!!  That’s a lot of pressure…are you even serious?  Okay…those bras also had beautiful ladies wearing them who had escorts who were professional athletes. That helped. J

 

Then there was little old plain, Jane me.  In my childhood cancer bra.

“Why the hell not!” overtook What have I done?” and off I went.

And it was SOOOOO much fun!! My girlfriends SCREAMED and ROCKED it out!!! They were right there, front and center right beside the runway. That made me feel 100% better!  My posse had my back!! Love those girls!!! And Brian was there cheering me on too smiling and clapping alongside my friends.

And then…the best part of the night. As I was standing in front of my unruly crew, Brian pointed to someone sitting beside him.

It was a very special little guy. His name is Quinlan and he is the son of one of my friends, Jennifer, who earned her angel wings after a battle with colon cancer. Jennifer is one of my heroes and her son is too.

“Q” was there with his grandpa taking pictures for an amazing local magazine called 435 South.  One of the bras that was in the auction was created in Jennifer’s honor and when I saw it, I cried.

I had seen Q backstage and talked to him and already gotten a hug.  He looked up and me and smiled and I bent down to give him a high five, which turned into a “near hug”. I couldn’t quite reach him.  His big, beautiful smile gave me courage!

And off I went.

My little childhood cancer bra brought about $1,300 dollars (which is still a boatload of money to me) and it will greatly help those breast cancer patients!

It was simply a magical night and I am so glad I did it.

One time.

Detours come in the strangest packages sometimes…and this time it came in the form of a beautiful blue and gold bra and a 50 foot runway.

TAKE THAT cANCER!!

Info on the event is at artbrakc.com J

My Mom...

My mom was...

...well...

...a lot like me (or vice versa)! :)

She was strict, no-nonsense, and pretty freaking funny (on the right day)!! :)

She was the one who took me t.p.'ing on Halloween for the first time!!

 

I never was late getting home because I didn't want to face her wrath, my curfews were early (11:00), and she tracked the mileage on my car to make sure I wasn't going places I shouldn't be going. I lived in a small town so if I went anywhere, she heard about it!! We didn't need GPS devices!! LOL!

Loretta Grace Nelson was an awesome mom and I loved her very much...

and we also clashed like the Titans because we were so much alike!! LOL! She was the Irish one in our family and I am the only one of the three of her children who got that gene. My brothers are like my dad...laid back!!!!

In December of 1983, my mom started acting crazy! She was talking like a nut and acting really insane. She grabbed her car keys and headed for the car. I stood outside the driver's side door trying to convince her to come back inside when I realized, she was going to go no matter what I said so I jumped in the back seat of the car very quickly. She tried to drive off with me half in and half out of the car. I climbed over the seat to the passenger's side front seat.

She wasn't making any sense. My mom didn't drink but I thought maybe she was drunk (I had just turned 18 and it was my senior year of high school). I kept asking her to stop and let me drive while asking her why she was acting so crazy!

She drove into town (we lived in the country) and started heading downtown...we flew through MANY red stoplights and finally I reached over and threw the car into park while we were slowed down at a red.

My mom threw it back in gear and started again, so I crawled on top of her and drove us into a parking lot of a bank, hit the brake, shut it off and grabbed the keys.

I got her talked into letting me drive us home, which I did and we walked back in the house.

These were the days before cell phones. I used the house phone to call my dad who came home from work.

We happened to be renting a house from a doctor and the doctor was down at the machine shed near the barn we were keeping our horses in so my dad went down to get him.

Mom started talking really crazy again and stood up and then she fell to the floor and had a seizure.

I called 911 and held my mom while turning her on her left side as the dispatcher told me to do.

About that time, my dad and the doctor walked in.

A few minutes later, the ambulance got there. They worked on mom and then everyone left. I sat in the living room shaken.

I got the keys to my pickup and went to the hospital after picking up all of the trash from the paramedics because I knew my mom would have a fit when she came home and found trash on the floor!

I was a "newbie" to the medical world, I didn't know she wouldn't be home that night.

They did a CT scan and determined that mom had a stroke and after several days, she came home and began the process of learning how to speak, walk and use her hands again.

We got through Christmas but mom still wasn't acting right. In April, she fell asleep in her chair while cooking supper and burned everything. My mom had NEVER burned a thing!!

Dad took her to the doctor and they did another CT scan. It showed a mass. My dad and mom went to Topeka for exploratory surgery to find out what it was on April 11, 1984.

I was working at a private Catholic boys' high school washing dishes, stocking shelves, serving food, and cooking sometimes.

My dad was the County Extension Agent and the Home Economist came into the kitchen where I was working and asked to talk to me.

She told me that they had opened mom up and found a brain tumor that was so extensive that they could do nothing for her.

I was dating a guy who was a freshman in college at the time and he came with me to Topeka (about a 4 hour drive). I kept it together really well until about an hour outside of Topeka when I got crazy dizzy and had to pull over, then he drove. I think that's when it sunk in that she was going to die.

We walked into the hospital and I went into mom's room and she opened her eyes, smiled, and said, "Hi Weesie" That was what my mom always called me.

I had watched my grandparents dying, and had gone through enough to know that my mom's protocol was "you never cry in front of them" so I stayed for a bit and then they kicked me out of her ICU room.

I cried then.

The doctors said they would do radiation to increase the quality of her life, not the quantity.

We brought mom home and dad and I took care of her.

She said she wanted to live long enough to go to my high school graduation...and she did. My mom came in a wheelchair with her wig on. She already could not speak but she was happy.

Dad and I cared for her as the cancer slowly overtook all of her body and functions. I remember the day that the hospice nurse asked if we wanted her to die at the house or in the hospital. We chose the hospital.

The last time I saw her alive, she just stared at me. We just looked at each other and I talked to her. She ripped out her IV line and blood went everywhere. The stupid nurse came in and said, "I wonder if she's trying to tell us something.."

I can't repeat what I said.

I'm pretty sure my mom smiled again!!

The night before she died, I had a dream.

In the dream, she was asking me to come see her because she was lonely and she wanted to see me.

I told her that I would be there in the morning but first I had to help with the 4-H booth at the sidewalk sale.

Then I had a vision of her floating and smiling and she said that she was okay, she was free and not in pain and she told me that she loved me and I told her that I loved her.

I woke up and was absolutely terrified because I thought she was dead. I could not move and I laid in bed for 3 hours until the sun came up.

July 19, 1984, I went to the sidewalk sale to help with the booth as planned (literally two blocks from the hospital). I was going to go to the hospital to see her after my shift ended at 11. My dad's secretary came to the booth to get me long before that.

She told me mom had died.

My mom very much believed that angels live around us and they are a part of our lives. And I KNOW that she has been a part of our lives through all of this cAncer mess!

Sometimes I just "know" stuff and I listen to that gut feeling and intuition. I have always (and will always) believed that it's mom trying to help me.

She is very much  a part of our lives, but I so wish my boys could have had her in their lives here on Earth.

My mom and my daughter, Miranda, are our guardian angels and we are blessed to have them protecting and guiding us.

My mom has been watching and smiling from Heaven for every big event in my life, but I would give anything to hug her and look into her eyes one more time and tell her that I love her face to face.

Everything is perfectly timed and the lessons I learned while taking care of mom as she died have served me well while taking care of Braden.

I am a very lucky daughter to have had a mom like mine!!

My Irish side....and the continued fight for hope.

So, continuing the story from yesterday, the same day that we got the news that Braden was in a miraculous second remission...

----And there is SO MUCH I have left out that happened before the 8 months of chemo (we will cover that another day) :)

Dr. Mosse said what I had always believed. 

Just because the scans showed no evidence of disease, did not mean that he had no cancer cells in his body.

It just meant that he had few enough cells that they couldn't be seen on his scans. 

A second remission with neuroblastoma is extremely rare (they don't even keep numbers on that because there are so few), and the vast majority of those kids relapse a third time within 6-12 months.

Makes the point...most often it's not really gone, just hiding from the scan technology.

But...our kids don't have treatment options because most trials are written such that you must show evidence of disease to get treatment.

Again, it makes sense to treat kids who have disease...but we believed that he had disease remaining, but we couldn't see it. 

Another angel whisper.

So Dr. Mosse mentioned a few therapies out there...there was ONE he might be able to qualify for, a new type of immunotherapy (ie antibody therapy).  Kids could be in remission and receive it...

The next day she called me and said he couldn't qualify for it because there was one teeny piece of scar tissue showing (they were sure it was not cancer) and that ruled him out.

Damn.

So I thought and thought and thought...and again, after a dream, I woke up and sent another email to Dr. Mosse.

Let me back up to August 11, 2009,

when we found Braden's relapse, we were trying to qualify for immunotherapy. 

Right after he was declared to be in his FIRST remission...I still felt like there were cells there and was fighting for more therapy.

At that same time, we got a letter from the NIH stating that the immunotherapy he had not received during his initial protocol, (due to a random draw) had shown to improve odds of survival for children like Braden by 20%...umm...that's a lot when you only have 30% to start.

SUPER!  And damn.

So we decided to take them up on their offer to allow Braden to receive it.  We would do immunotherapy and that would help get those cells I still believed were there.

But we had to scan to make sure he remained in remission before he could begin receiving it.

Immunotherapy is also supposed to be done within 110 days of bone marrow transplant.

It was considerably later than that for Braden.

Why within 110 days??  Well, here's how it works:

CH 14.18 is the name of the antibody used in immunotherapy.  It is paired with cytokines that help the antibody seek out and bind to neuroblastoma cells.  Once it attaches, it kills just those nb cells. 

It's like a targeted missile.  It seeks out ONLY its target and doesn't destroy all cells like chemotherapy.

AWESOME!!!

However, it additionally attaches to every nerve cell and it is EXTRAORDINARILY painful.

Transplant knocks out your entire immune system. You return to having less than the immune system of a fetus.  You are at high risk from every single agent that can cause illness or infection.

As a result, you spend months in isolation from the world.  100 days.  100 days of no contact with the real world. 

It's great (more sarcasm)...someday we will talk about transplant and those 100 days and my extreme germophobia!! LOL!

SO...if you do immunotherapy within 110 days of transplant, your system hasn't really started to fully reboot and begin to create immunities again yet.  That is good for this therapy because your body doesn't recognize the CH 14.18 and the cytokines and try to fight them off as invaders as readily as when your immune system is more fully developed after those 110 days.

We decided to go for it and scanned to qualify and found his relapse which meant he couldn't proceed with the immunotherapy due to his progression of disease. 

Horrible, devastating news...

So fast foward back to January 28, 2011

The day after we found out he was in a second remission and the day we found out Braden couldn't qualify for that "new immunotherapy" because of that scar tissue and I was thinking and thinking and had that dream and fired off the email to ask Dr. Mosse...

and asked her if NOW we could get Ch 14.18 immunotherapy for Braden since he had already been slated to receive it back in 2009.

She said she had already been working on it and that we would have to appeal to try to receive it on a compassionate care access basis.  Because he had originally been slated to receive it and had been accounted for in the allotment of drug made, he might be able to get it.  It was in very short supply and difficult to get access to.  And...

It had never been done before. 

No child have ever received CH 14.18 in the case of a relapse and second remission.

It works best in cases of "minimal residual disease" (MRD) and showing no evidence of disease was ideal.

Perfect....we elected to do immunotherapy at Children's Mercy in KC rather than in Philly...it would be the same therapy in either location and it would help to not have to pay for all of those flights as there were five rounds...a week long each.

HUGE mistake.

Well...we got it and began immunotherapy here. 

Now let me just say right now..our nurses ROCKED it out!! They did. 

Our oncologist, on the other hand, produced an epic fail!!

The very first day of immunotherapy, we did Braden's pre-meds, began his morphine to help with the pain and started the therapy.

Oh friends...I have held my son through more than I could ever explain...there have been times that I have held him not certain he would survive until the next day...

Nothing...NOTHING compared to this therapy.

It was beyond horrible...our son screamed in my arms and was shaking in unspeakable, shocking pain. 

Our nurse kicked into action and immediately adjusted pain meds, I held him and rocked him and talked to him and told him how we were trying to help...we would help. He looked at me while his eyes showed complete terror, and he begged me to make it better.

I tried to be calming, but tears were in my eyes and my heart was falling into pieces.  It was simply horrible.

And then...he couldn't breathe...anaphalyxis.

We shut it down, administered the epi-pen, we needed to follow it with a second, and were about to head to the PICU when he started recovering.

That was an awesome hour.

(more thick sarcasm)

It was the most horrific thing I have ever witnessed with Braden. 

I had to fight like hell to get the docs to analyze why it happened and what we could do to try to fix it for the next day. The docs wanted to just scrap immunotherapy for Braden without finding out what happened and why. Our nurses helped me fight.

We had a plan, new pain meds...higher dose of pain meds...by a bunch...multiple pre-meds for the allergic reaction...slower administration rate....we were ready.

Our KC oncologist walked into the room the next morning and said,

"Well...I heard what happened yesterday and you are getting exactly what you wanted!" 

(he didn't agree that we should be treating since he was showing no evidence of disease)

And I said, "Stop right there....don't you DARE tell me that I wanted to hold my son while he writhed in pain and couldn't breathe...I'm trying to save my son so back OFF of that line of thinking or leave!"

He backed off...

and likely saved his family jewels. :)

Well...we were able to make it through the rest of the round running it as slowly as possible (not getting the entire dose in but getting most of it in).

Then two weeks later, we came back for more...

Second round started....

Unknown to me, the docs had not ordered Braden's meds that kept him from going into anaphalyxis round the clock like they needed to be ordered. 

One of the nurses even questioned it but was told he didn't need it.

So...he had an anaphalactic reaction again...

in the middle of the night...

not a good time to have an issue, apparently.

They couldn't get the fellow to answer his pages to get orders on what they should do.  So after the second time they paged, I got angry and insisted that they shut down the therapy and administer the epi-pen. I told them if they didn't, I would do it myself.

They did it.

The next morning, our oncologist came in and said that was the end of Braden's immunotherapy.

I let him have it...

I explained that it wasn't our fault...it was because HE hadn't ordered the right meds and they had been negligent.  I walked him through every step and told him ever "oops" that resulted in this reaction putting my son's life in danger.

I also told him that I had to order them to shut the meds down and administer the epi pen because they couldn't get ahold of the fellow in the middle of the night.

And he said he would check...and left to do just that.

In the meantime, the doc on the floor came in and told me that "Braden' hadn't received enough of the medication during the first round and this one day of his second round for it to do any good so we should just stop therapy all together".

I told him I wanted to see the data that showed that one must receive "x" amount of the immunotherapy before it wasn't useful...

...knowing that data didn't exist.

So I won that battle easily! :)

Then our oncologist came back and apologized and told me I was right and that the meds hadn't been ordered or administered...but that we should stop his therapy. It was just too hard for Braden.

Ummm...wouldn't be too hard if you did your job and gave him his meds!!! 

Asshat!!

I pulled out my copy the protocol (pretty sure at that point he was wishing he had NEVER given that to me)

...and I read all of the conditions which could result in him not having his therapy...the reasons to shut it down...the only one he had met was the anaphalyxis deal (and I agree it's a big one) BUT if they had given him his meds, we wouldn't have had that problem.

And I had the world's best nurse there to back me up... :)

To sum up, I argues that they had not given him the meds to prevent the reaction (even when questioned), when the reaction happened I had to tell them to shut it down and give the epi-pen (last time I heard, parents shouldn't be the ones directing the medical care because the fellow is "too busy"), and lastly I was the one reading the protocol to the doctor because he hadn't read it (he admitted it...he hadn't read it, good thing I had read it...every page) to prove he was wrong... 

Our oncologist and I debated and argued and fussed and finally out of frustration, he got up to walk out...

That's when I shouted, "I AM TIRED OF BABYSITTING YOU!!!!"

He stopped in mid-step...

and again I said, "I AM NOT KIDDING!! DO YOUR JOB! JUST DO YOUR DAMN JOB!!! I'M TIRED OF BABYSITTING YOU!!!!"

He continued to walk... 

probably a good choice.

And...I refused to allow him to see my child ever again. 

And the hospital refused to give Braden a new oncologist...stupid rule

...so we got that changed.

It took a year, but we got it changed. :)

We finally got a new oncologist in KC and  I LOVE her!!  SHE ROCKS!!!!

And...that was only round 2 of therapy!! :) LOL!!

3 more to go...all three were filled with multiple ridiculous "you have got to be kidding me" moments including finding out that the hospital had given him a medication that was forbidden to give prior to immunotherapy because it may prevent immunotherapy from doing any good, not just ONCE, but TWICE!!

Our nurses caught that one..

And it involved us calling the NIH to see if it was even SAFE to proceed.

That resulted in me fussing enough that the hospital did a review of systemic procedures and made changes so the slip up in communication wouldn't happen again.

And trust me, I tried to move hospitals for therapy, after refusing to see our doc again, but  because CMH had been the hospital to apply for the compassional care access, they had to do the therapy as that license number was non-transferrable.

We got through all five rounds...we made it!!  Only because of our nurses who watched out for Braden! I trust them completely!!!

The therapy was horrible and nasty and awful for Braden...and it was horrible and awful and nasty systemically with the hospital.

Since then, I have to tell you that the hospital took my concerns VERY seriously and they were extremely transparent and they have listened, found the weaknesses and fixed them.

I appreciate that so much!! And I am building trust with them again.

And thanks to our new oncologist, Dr. Neville, I trust them even more! She really IS great!

I have ALWAYS had faith in our nurses!! They were the reason he made it through all five rounds...I LOVE THAT TEAM OF NURSES!! They are the BEST in the world!! Seriously!!

We ended with round #5 of immunotherapy in room #8...the same room he was diagnosed in.

Full circle!

TAKE THAT caNCER!!

And after we got through immunotherapy, we still weren't done.

Next stop...ABT-751! :)

And the biggest fight yet... (not with a doc...but with a pharmaceutical company) but I'll save that one for tomorrow! ;)

The Fight For Hope...

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” 
---Martin Luther King, Jr.

That is what we are doing.

After Braden became immune to multiple therapies, the doctors told us that all we could do is hope for some additional time with him.  That he would not achieve a second remission.

I was broken...completely.

No hope.

Just complete despair.

Then one night, I had a dream....I am certain it was my mom talking to me from Heaven...

There is no other explanation for why this dream would have happened...I believe in "angel whispers".

I woke up in a start, sat up and thought, "Irinotecan and Temodar!!"

The day before this dream, I had an email convo with Philly in which we agreed that Braden should do ABT-751 to try to hold the remaining disease stable.

I woke up after that dream and fired an email off to Dr. Mosse and asked if it would be reasonable and if we could do Irinotecan and Temodar (two chemos).

The gamble was huge.  Braden's disease had proven to be refractory to chemo and I was asking for chemo.

We had discussed these two drugs in August of 2009 when he first relapsed.  After his disease proved refractory to chemo, we had moved past that thought.

Braden's hair had grown back, and he had the most beautiful big, loopy curls.

Dr. Mosse said it had worked for some kids, and if we wanted to try it, we could.

Another one of those impossible decisions.

1.  Do nothing and spend your time without him having the effects of chemo. But death was a matter of time.

2.  Do ABT-751 and hope to keep him stable for a longer period of time (the longest we were told a child had made it in a situation similar to Braden's was 2 years...which seemed like an eternity to us that that moment).

3.  Try the chemo.  And maybe...maybe...it would kill those cells. 

BUT...if #3 didn't work, and his disease progressed, choice #2 was out of the question and we were back to #1. 

I just knew we needed to do #3...I "KNEW"...but...

It is SOO hard to make that choice.  We could give away 2 years of time if I was wrong.

One of the biggest things to me that was that I knew he would lose his hair and I didn't want him to die bald.

It was a visible sign that cAncer had been the reason and that really bothered me. 

Stupid, I know...but it did.

A lot of life can happen in two years...two more birthdays, a chance to lose his first tooth, friends, memories that would last forever...

How do you make a choice like that??

You just jump....

You can't dip your toe in the water and see how it's going to feel...

There is no crystal ball...

You just jump.

I listened to the angel whispers and,

I looked at our son and saw his fight.  Braden wasn't done...he was still fighting with everything he had.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” 
Martin Luther King, Jr.

Oh my sweet boy...

How your fight, strength, faith, and courage inspire me....

and frighten me.

It would be one hell of a bad deal if I was wrong.

We decided to go for it.

The first two months were nasty but compared to the chemo he had done before, not that bad.

It was outpatient...we had never had outpatient chemo...sleeping at home at night! YES!

We got to play at home, go to the park, and have a life...

And I watched those beautiful curls fall out. I kept several curls when we finally cut it and shave his head again.

Damn cAncer.

Then we scanned...I held my breath...

And the one remaining  piece of tumor near his liver was shrinking...

We kept going....

“We must accept finite disappointment, but never lose infinite hope.”

Martin Luther King, Jr 

 

8 months of chemo.

 

It got really bad. 

 

Braden's gut is colonized with c-diff and the Irinotecan was wreaking havoc on his gut.

 

One clinic day, our oncologist tried to convince me to stop...

 

I said no.

 

So he sent in another doctor who tried to convince me to try to stop...

 

I said no.

 

He came back in the room and I told him "nice try"...

 

and perhaps I mentioned he could go to hell...

 

I'm pretty sure I did, but I did it with a smile so that makes it better right?  LOL!

 

Actually, both our doc and I got a good giggle out of it!!

 

It was this simple...if we stop, he dies.

 

During our multiple rounds of chemo, sometimes his scans would be improved, sometimes stable every three to four rounds when we scanned. 

 

But, again, I knew if we stopped, it would take over and he would die.

 

Then, January 27, 2011...Dr. Mosse walked in after scans...I was holding my breath because I had watched his scan images during the scan and it looked different.

 

I was preparing myself for the bad news.

 

And....she said,

 

I am very happy to be able to tell you that we see no evidence of cancer on Braden's scans!

 

I said in a small, shocked whisper, "I'm going to need you to say that again!"

 

Then tears...every single one of us in that room, except Braden...

 

who just wanted to go play.

 

 

 

It wasn't the end...just because scans show no evidence of disease, does not mean cancer is not there.

 

It just means the scan cannot pick it up because the current technology isn't good enough to get to a small enough level.

 

We would continue to fight....

 

and we continue today.

 

But that day was a huge victory.

 

“Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.” 

Martin Luther King Jr. 

 

HOPE....TAKE THAT cANCER!

 

And Happy Birthday Dr. King.  Thank you for your courage, fight, wisdom, love and vision.

 

 

 

 

Pennies From Heaven...

that's what I call them...

...and they are real.

Once a friend sent me a story in an email about a man that was rich beyond all measure, yet while walking with his friend, he stopped to pick up a penny from the dirty ground and put it in his pocket.

His companion asked him why he would pick up a dirty penny when he had so much wealth.

The man's response was to hold the penny up and show his friend the words, "In God We Trust"

He said that it was a reminder each time he picked up a penny.

In God We Trust.

Not long after reading that story, we were in Philly for scans.  We were staying at a hotel with an indoor courtyard. Braden loved to walk around that courtyard so we did, for hours at a time in the evenings.

And as we would walk, I would pray...

and worry.

During one of our scan visits, I had watched his CT scan and was certain I had seen a new spot.

And they were acting strange and made us do another picture...something about a shadow...

I was sure the disease was progressing.

When we got back to the hotel, I had gone into the bathroom and cried and (in my head) screamed at God asking "WHY?  We have been faithful, we have given it to you, but WHY must he die? I don't understand!  I understood Heaven was the right choice for Miranda and I prayed for her to go to Heaven because she needed you more than I needed her, but WHY, WHY must I give you Braden too..I don't understand!!!"

I got it back together to take Braden out to walk...he loved it and I wanted the time to think, pray and spend a few hours with him before we got what I was certain was going to be awful news the next day.

I wanted a few more minutes of "it COULD still be okay" time before the world crashed in with those scan results.

So we headed out...

As we were walking, Braden stopped abruptly in his tracks and I bumped into him.

I nearly fell and nearly toppled him over with me.

Braden began walking again and I looked down...

there...on the carpet right where he had stopped for no apparent reason, was a penny.

I picked it up...

...and cried.

It was face up...

In God We Trust.

I put it in my pocket.

And the next day when we went for our MIBG scan, I had it in my pocket and I kept rubbing it the entire scan...and I prayed.

I closed my eyes and just kept repeating, "trust, trust..." almost a mantra.

As we left the sedation room about an hour later, I caught a glimpse of Dr. Mosse walking into the CT scan review room.

We were scheduled to meet with her in just a few minutes.

It had to be because they called her to check out "the shadow" from the CT the day before.

I kept rubbing that penny in my pocket and telling myself to trust.

After an long wait filled with apprehension, Dr. Mosse told us his scans looked improved.

I nearly fell over.

I still don't know what the problem with the CT was...

and I never asked because when you get good news,

you just say thank you and move on. :)

I believe that penny was from my mom who has been in Heaven since 1984 when she died from a brain tumor.

In fact, I know it.

I have found a penny on most of our trips to Philly although the past two I have not.  And yes, that worries me, but both of those trips have had a sundog either during or right before (from Miranda).

Once I found a penny on the seat of a cab.

Another time, I found a penny under Braden's chair in the sedation waiting room.

There have been others as well...

I keep every one of them, and on the harder days, I pull them out and rub each of them and remind myself to

TRUST.

Pennies from Heaven...

TAKE THAT cANCER!

Sundogs...

I had never seen a sundog before...

until one day right after Miranda died.

I was at the park, sitting at a fishing pier watching the late afternoon sun,

thinking about Miranda and sobbing because she was gone.

My arms were empty and so was my heart.

There is no pain greater than losing a child...no task harder than burying your child...

nothing more awful than having your child hemorrhage, convulse, and die in your arms,

and then living without your child every single day of your life.

Nothing!!

I simply couldn't get a grip on my grief.

And I was at the park, looking at the sky, crying and begging God to show me a sign that she was in Heaven safe and that she was safe and happy.

I had done that before.

After my mom died from brain cancer in 1984, my senior year of high school.

I was driving my car along the highway and it hit me like a ton of bricks...

I was sobbing and begging God to show me a sign that she was in Heaven and that she was happy.

And...

A rainbow appeared front and center in my windshield.

Now I was laughing and crying.

My mom was in Heaven and she was happy!

So that day after Miranda died, I sat again and...

I looked up and saw my very first sundog.

It looked like a tiny rainbow to me, I had no idea what it was...I just thought it was a baby rainbow and to me,

that meant that my mom had her and was taking care of her in Heaven.

I had asked her to do that, and

I told Miranda to look for my mom as she was dying.

Let me back up a bit...

When I was 17 weeks pregnant, my water broke.

I was 35 years old and they recommended I have an amniocentesis so we would be prepared should there be any genetic disorders.

Sounded good to me...I have a strong need to be prepared and ready to go from day #1!

Well three days after the procedure, my water broke which is very rare,

and it did not reseal,

and that is even more rare.

Somehow I can get in those types of "very rare" lines quite easily but when it comes to the winning the lottery rare line...not so much! :)

The doctors told us there was less than a 10% chance that she would survive and that we should strongly consider terminating the pregnancy.

I told them that it was not my choice to make, God would decide.

I spent a month on strict bedrest at home,

My friends and Brian took GREAT care of me!! 

I have been SO very blessed with so many angels on Earth!!

My friends are my family! I'm the luckiest person in the world to know such amazing people!!

When my pregnancy was considered viable, I got to be admitted to the hospital.

and I spent 1.5 months there and again my friends came to visit frequently to lift my spirits and bring me hope! 

I LOVE these people!!

I knew the reality we were facing,

But I had HOPE that she could be that one that survived.

On July 31, 2001, one of the veteran nurses came in and told me that her vitals were declining and she thought she would have to be delivered by c-section soon.

She asked me if anyone had told me what would happen during a c-section and I said no.

Then she told me all about it, patted my leg in a motherly way, and walked out.

I sat there quietly for a very long time, letting it sink in.

And I prayed the same prayer I had said since my water broke on May 25, 2001, PLEASE God, let her stay...I don't want her to die!

I do not cry in public.  At least I try not to.  So eventually I went into the bathroom and closed the door and ran the shower so no one could hear me,

and cried until I didn't think I could cry anymore.

And I finally prayed the prayer my heart knew I had to pray...

Please God...keep her safe...please don't let her be in pain even if you have to take her to Heaven to do it.

That was the hardest prayer I have ever had to say but I meant it from the depths of my soul.

I wanted her to be happy and safe and not have to be in pain.

Heaven is the ultimate reward, not a punishment for the person earning their wings.

It SUCKS for the people left behind!

And in just a couple of hours, the nurses came back in and told me that I needed to call Brian and they were going to deliver her.

It was as though God patiently waited for me to "get it", to understand.

The neonatologist had told me that my first sign about how she was doing and if they thought they could do anything to help her fight, would be whether or not they rolled her out of the room to try to intervene.

If that happened, they thought she had a chance, if not...

they would hand her to me and let me hold her.

She was born..no cry, her lungs hadn't developed enough for her to be able to breathe on her own due to the lack of amniotic fluid in the womb while she grew.

They took her over to check her out and Brian went with them.  I couldn't see anything.

And no one said anything.  It was silent except for the distance mumblings of the doctors working on Miranda.

I laid there, shivering, with silent tears running down my face,

Then, they rolled her past me....

I smiled...that was hopeful...they were going to be able to try to save her...

and then I caught the eye of the neonatologist...

and I knew.

I had to go to recovery for an hour and during that time, Brian got to go see her and the one little piece of video we have of her is of her opening her eyes to look at him.

I never saw her eyes in person but they were sparkling blue and she had beautiful blonde hair...and it was even curly at her sweet little neck.

She weighed 1 pound 9 ounces and she was the most gorgeous baby in the world!

When they finally rolled me in to see her, I had to lie flat and I couldn't see much other than the oscillating ventillator, the thousands of tubes and lines, and warmer.

I asked them if I could hold her and they moved my bed right beside her and put her on me so that her head was on my shoulder and I was cuddling her.

She was so small!!

They asked us what name we wanted to give her and we picked Miranda Grace.  Miranda was a name we liked and Grace was my mom's middle name.

As Miranda spent her 15 hours with us, we told her about her kitty Cosmo and all the people that loved her here on Earth. 

I told her my mom was in Heaven and that she should look for her because she would take care of her. And her Uncle Phil (Brian's brother) would be there to help too!

Miranda fought so very hard...she tried to stay.

I remember when I told her it was okay for her to go, that she didn't have to fight to stay anymore.

I had rubbed my belly for 2.5 months while on bedrest. It had been just me and Miranda.  I felt her move and kick.  I talked to her all the time and for that entire period, I had repeatedly told her that when she was born she would have to fight and that I didn't want to lose her.

And that I loved her.

As I told her she could go, and kissed her beautiful little head, she slipped away.  I knew when her heart stopped, not because of a monitor (they had unhooked it) but because I could feel it in my mommy heart.

And then my heart shattered into a million pieces.

I have never cried so hard nor been so sad.

The pain was indescribable and I only knew her in person for 15 hours.

No parent should ever have to bury a child.

All of these experiences are the reason we have fought so hard to give Braden HOPE for more time and why we started the foundation so no other children have to go to Heaven and no other parents have to bury their children.

Too many of our friends have had children that earned their angel wings and it's not okay. 

We never say our heroes lost their battle to cancer...they EARNED their angel wings..

cAncer didn't win...God did.

So that day when I saw that first sundog, I started laughing and crying.

I could see my mom smiling...I could feel her love and I could feel Miranda's happiness!

Sundogs have always been my sign from Miranda Grace that she is smiling at us and sending us HOPE!  And rainbows have always been my sign from my mom.

I see them at the most important times in my life, the times when I really need a hug from my mom and Miranda.

Braden has scans in Philadelphia next week.

I have major scanxiety!!

MAJOR!

Every parent of a child with cancer does,

Every time scans come around!

Twice now, we have been surprised with cAncer's appearance and reappearance on a scan when we weren't expecting it.

So yesterday, as I was driving home from picking the boys up from school, I looked up and saw a sundog.  I noticed the tiniest one in the sky to the left (you will see the bright spot between two trees, you can't really see the rainbow in this picture but there was a lot of pink...there always is).

I smiled and said, "love you baby girl".

The boys are used to it by now and Zach usually says hello to his sister when we see one!

I drove a little further and looked again and noticed it wasn't just a small sundog...it was a full circle around the sun.

Love you mom...thank you for holding my sweet baby until I get there!

I never doubt that our angels are watching over us and protecting us every single day. 

And I am grateful when they send me a hug from Heaven!!

TAKE THAT cANCER!!