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!!