Thursday, October 3, 2013

Living...

Our foundation, Braden's Hope For Childhood Cancer, (www.BradensHope.org) just had our second annual HOPE Gala on the 28th of September.

It was an awesome event that many kind, supportive people attended to help us raise awareness and funds for targeted treatments of childhood cancer.

And it was a big job to pull it together for 550 people...raising about $90,000! What a great feeling!

Since Saturday, I've been rather melancholy.  I couldn't really wrap my head around why until today...when I figured it out.

I've been the President of Braden's Hope almost every minute of every day for several weeks getting the exciting gala preparations done with my friend, Jenny.  Thank goodness for Jenny....she worked twice as hard as I did!! She is AMAZING!!

I've been detouring with the boys....but I've honestly been in work mode around the clock for the most part.

Not something I'm proud of...but it was necessary.

I gave my speech on Saturday night...an update on the foundation and information about childhood cancer and targeted treatments for our kiddoes.

And then after the live auction,

I snuck upstairs to our room where Braden and Zach were sleeping while their babysitter cared for them.

And I woke up my soundly sleeping baby and gave him three shots of chemotherapy.

That sucked.

Beyond belief.

My poor baby!

Shots suck...

but shots when your mom wakes up you late at night in a strange place to poke your leg three times with burning chemo...

pretty much the king of sucky circumstances.

During my speech, I talked about targeted therapies and how important they are for our kids with cancer. I compared targeted therapies to treating dandelions in your yard.

You wouldn't rent an excavator and dig your lawn up 8 foot deep to get rid of the dandelions...you would go to the lawn and garden store and get the spray that kills the dandelions but leaves the grass largely unharmed.

Targeted therapies work that way...

chemo is the excavator method. It kills cancer cells...and healthy cells too.

What I didn't have the strength to say was that while funding targeted therapies has been our mission since our inception,

we had no way of knowing that on July 8 we would have a personal example of why targeted therapies are so important when Braden was diagnosed with TREATMENT INDUCED Leukemia.

Treatment induced....

...yes...

CAUSED by the treatments he received to save his life.

That's messed up!!

I just couldn't talk about it and take a chance of losing it in front of everyone during that speech.

So after the shots....

I went back downstairs to clean things up and thank everyone.

And get back into President mode...not mom mode.  Just "do" not "feel".

The last several days, I have been "feeling mode" and not in President mode very often.

I put up Halloween decorations and every time I pulled out something the boys had made when they were little, I choked back tears.

I know it's okay to cry...but I don't like to cry...

because once I start...

I'm not sure when I will stop.

We just finished the last of 7 days of chemo shots last night.

He's so tough...he never wants to do them and always says, "Let's not do our shots today mom!"

And then he does them.

He says"ouch" each poke and he squirms and tries to push my hands away so that damn needle doesn't come close.

And after each shot, he smiles and laughs and happily says "that one...or that two"...and finally "last one"...and then cheers and high fives and hugs!!

Every time...

He is SOO brave!!

I'm pretty sure I would look at the shot giver, curl up my fists and say, "go ahead...try it one more time and let's see what happens"...

And now his little legs are completely covered in big red welts from the chemo shots...and they are sore and a few blister.

I know he has to have the shots.

It's NOT a choice...

Yes, home health could come give the shots, but then I have to wait on them to show up whenever they want...take their phone calls about I need to come now instead of then...blah blah blah...and they would want to do them early in the day before they are off duty. I want him to have them right before he goes to sleep so he sleeps through the worst part after the injection.

And I have MS and have been mixing and injecting my own shots for almost 14 years.

So I do them so we can detour and do whatever we want whenever we want.

Now that things have slowed down with the President me, and I'm back to more of the Mom me...

I'm forced to feel again.

It's really a lot easier to NOT feel.

BUT...if I throw myself into the not feeling work thing...I miss out on the important stuff...

We need to make Halloween decorations, collect fall leaves, go for walks, play in the park...

because it may be our last fall together....

our last Halloween.

Right now, everything is a potential last.

And that SUCKS.

Period.

Today I took Braden to the park to play...

and we had a ton of fun and laughed and giggled and played like nothing was wrong.

Our best crapfest defense is a joyful detour offense.

It's how we fight...it's how we ALL feel better!

And tonight, I look at his little legs...

and once again reality smashes my heart into a billion pieces.

I am a hopeful realist.

And I believe in miracles....

but we LIVE every moment fully because we may not get that miracle on Earth.

It's a good way to live regardless of circumstances.

I wish I had figured that out before this cancer mess...

Learn from our situation...don't wait to live.

Carpe diem!!

And hope for tomorrow!