and then....

It just doesn't seem to end.

We got the results from Braden's bone marrow and got the PERFECT answer..no disease.  WOO HOO!!

What a HUGE relief...or so I thought.

SO...I emailed our team in Philly and they told me that they were doing further testing to see if Braden had a form of pre-leukemia and that would take 2 weeks of wait time for the results to come in.

UGHHHHH!!!!

And damn....I thought we were in the clear.

So we wait, but...there's more...

Seriously.

We go to Philly for scans on July 16-17...scared out of my wits but hopeful. It's entirely possible it could be in his body but not in his marrow so there's another scare.

We know that Braden can't continue the treatment he is on right now because it's either a toxicity or it's not working any longer....awesome.

He's been on that drug for almost 2 years and was supposed to have it for a little over one more year. The irony is that we fought to keep it and now we lost it during the same time frame they were scheduled to take it from us.

I keep thinking that we must have fought for it so that another child (because all the kids taking that drug get to keep it now because of our fight) needed it and it will help him/her.  It had to be for some reason because it was quite a battle with Abbott Labs.

SO....the question is this. IF scans come back clear, he could qualify for a different drug that is being given to children that have neuroblastoma and are in remission.

BUT...his blood counts have to come up within 120 days and if it's longer than a few more weeks, we would have to repeat the bone marrow aspiration for him to qualify AND I haven't had a chance to fully review the data yet....

Well..I've had a chance. I just haven't.

I've been pouting and sulking and worrying....

and detouring!!

There's no rush because he can't qualify right now anyway until those platelets come back up so I'm choosing the later list of things to do. I ROCK at at them ALL!  But...I'm especially good at pouting...

There's a reason.

This new treatment could be done in KC which is nice BUT it means our Philly team won't be in charge of our treatment plan.

I really didn't realize how big of a deal that was to me, but it's HUGE!

Dr. Mosse has been our saving grace and that team has my complete trust...100%.  Okay...97.999%...I'm always skeptical of everything so I need a little room for that. ;)

On the flip side...I give Dr. Neville in KC the same amount of trust...she ROCKS and I absolutely adore her AND believe in her work.

I am literally mourning the potential loss of Dr. Mosse and team as our Principal team.

And at the same time, I'm thrilled to think Dr. Neville could be doing that role...she really is amazing.

So to transition my heart and mind, I'm pouting, sulking, worrying and most importantly...detouring. I need a break. I've been working 24/7 for a whole lot of months and the boys are off school and deserve to have a mommy who plays with them so I'm taking a break..a much needed break....but that break is for multiple reasons, not just about playing, it's also about sulking and pouting and worrying! :)

It's soooo complicated! LOL!!

In the meantime keep those prayers and hope coming in the event that he can qualify for this new treatment so we can really consider it. I just can't wrap my head and heart around hoping for it until it's even a possibility with clear testing results for the pre-leukemia, and clear scans, and....information about this drug that makes us think it's reasonable and helpful.

It's a roller coaster...this entire nearly 6 years of crapfest has been a roller coaster BUT...

we are blessed to get to ride...

The alternative is he is an angel and we don't get to even try.

We are VERY fortunate and that thought never escapes my head and heart.

And it also never escapes my head and heart that this is a REALLY messed up think to have to be grateful for...

cANCER...you suck.

And we will keep fighting you with everything we have...forever.

Keep hoping!!

TAKE THAT cANCER!

TAKE THAT cANCER...

That's the title of my new book...yup...a BOOK!! Unbelievable!

TAKE THAT cANCER...A Mother and Son's Journey to HOPE

Mrs. Schmeller, my high school English teacher is laughing right now. I could never get an "A" on any work I did for her...I'm pretty sure this book wouldn't be an A but it comes from my heart. :)

It's the story of our dual cancer fight, about how you have to fight with your gloves off, and about hope and faith in a God who loves us more than anything.

It's 5 years wrapped up into 110 pages. That was no easy feat...

As you can see...I like to type...words flow...too many words :)

So I had a co-author, her name is Maureen Rank and she was a gem. She helped me get things into a structure so I could feel what I really wanted to share and what really was important. I have thousands of pages of writing over the past five years and every page was important to me.

I'm not good at "thinning" :)

Once she had the format worked out, I could then write and literally feel what I wanted to say. I had no plan...I just wrote from my heart.

Hopefully, the book will give you courage and uplift you. It will probably make you shed a tear or two and I hope you fall over laughing at times too!

I expected to have a book when I was done, but I did not expect for the process to change me and help me grow. It did.

In so many ways, I feel like I have been able to wrap that package up and put it closer to a shelf. I'm not sure it will ever make the shelf...I don't think cancer fights work that way...but it is in a package, with a big bow!

Five years of battling, crying, laughing, detouring, living....

What a blessing to be able to write this book and have a story that is continuing for now!!

BLESSED!!

If you are interested in seeing the book and reading the back cover description please visit www.BradensHope.org and click merchandise. The book is $11.99 and we will ship it out to you right away for $2.00 extra per book.

If you live in Kansas City, you can pick a copy up at Outside The Box Gifts in the Rosanna Shopping Square in Overland Park 11616 Metcalf Avenue (right beside Mardel). You don't have to pay S&H that way AND we will have them for you at the HOPE Walk on June 8 at Frontier Park in Olathe. :)

They are on Amazon but if you purchase them from our website, we get to keep about twice the profit as apparently Amazon likes to have a big old share! :)

I hope you enjoy the book should you purchase one.

It feels so empowering to be able to write this story and put the past 5 years in that box...with the big bow...

TAKE THAT cANCER!! :)

Saturday....Zachism day....

Zach is 9 and says the funniest stuff!!

And he doesn't mean to...

He's blonde like his mom!! LOL!!

Laughter is the best medicine and kids DO say the darndest things!!

Each Saturday, I'll share a "Zachism" with you to start your weekend with a grin (hopefully).

This one is an oldie, but a goodie and still makes me chuckle.

I shared it with the comedian, Sinbad, who cracked up.

Sinbad has been an advocate for our kids with cancer, GREAT guy!!

So here's our first Zachism:

When Zach was 4 and Braden was 3, we were early into this cancer mess. 

We told him we had to take Braden back to the hospital as a family the next day to get a "cat scan".

He shook his head and said, "man, he gets a lot of those".

He thought for a bit and said, "but when can he have a DOG scan?"

LOL!!

TAKE THAT cANCER!!!

Happy Saturday!!