Sunday, September 22, 2013


How many times do we complain or worry or become upset about "stuff" each and every day?

The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.

We all do it...all of us at some point...

Even me!  More often than I care to admit.

I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.

Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.

For whatever reason, they enjoy the drama.

And that, honestly, make me sick...

and frustrated...

and very, very mad.

Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who  "chime" in and defend their inalienable right to have wind chimes that make them happy.

And you can imagine the responses to that and the firestorm that was created on this site...


Wind chimes!

Yup, this is a real story...not just a hypothetical's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.

Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.

She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.

And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.

You can't fix crazy and just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.

And then hope and pray for them that some day, they will have "enough". For my blog about that...visit

Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.

This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.

And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).

Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".

To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.

Not likely that is all going to align.

So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.

We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.

Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds).  Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.

Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.

Victory number one!

His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!

Victory number two!

Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.

That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.

The next day, we would have scans for the neuroblastoma to see if it remained quiet.

I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.

And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.

And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.

Victory #3.

Now we had about 3 hours to "play" before 5:00 when everything closed.

So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.

It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.

I decided that today...we were going in.

We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....

We opened the door and could immediately see into the massive worship space.

And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.

And I simply thanked God.

I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".

And we left.

I didn't even ask Him for clear scans the next day.  In all honesty, I didn't even think about it.

All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.

I just thanked Him.

I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.

And Braden's scans continued to show "no evidence of disease".

Victory #4

A tremendous blessing and gift.


We still get to move forward...we get a green light for this next round of shots...

and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.

We don't know what the next storm will be...

rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure),  transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....

Everything must align perfectly.

It's going to take a lot of hope, it's going to take a miracle...

But for now...we are just grateful for our blessings.

Each day, we get to choose how we approach life.

We choose detours...



and Gratitude!!!

Wind chimes just don't matter!

Let them go....

And fight to live with a thankful heart for blessings that surround you.

Even in the darkest of storms...

we can find something to be grateful for....

And WE have a billion blessings to be grateful for even in the midst of our dark storm.

Most notably, a NINE year old who leads the charge and a TEN year old we love very much!


My friend Christine and me (my hair just started coming in after chemo) with our wind chimes a friend gave us!