Thankful For Lessons...

Life hasn't always been fun and games. I've had a lot of crapfest moments, our daughter died fifteen hours after she was born, we had two miscarriages, I was diagnosed with MS, I fought breast cancer, and the worst is that our youngest son has been actively fighting cancer for nearly 7 years.

But those crapfest moments taught me several lessons for which I am very thankful. So in this season of giving thanks, here are the lessons I am the most grateful for

(coincidentally they are also things I wish I had learned a lot earlier in my life).

Real Friends Are Blessings...
Friends who are loyal and present, friends who are the type of people you hope to be for them. I'm extraordinarily blessed to be surrounded by true friends who love others more than they love themselves and they show it every single day. They make me a better person and I grow because of them.  Cherish those people in your life and invest in them. People who are negative, gossipy, or cause drama have no place in my life.  I have zero tolerance for "mean girls" and I wish them well in their lives and walk away.  I certainly wish I had learned THAT lesson much earlier in my life.

Conflict, confrontation,and discord...
I know that sounds strange, but those things are actually very healthy when you adopt an attitude of "let's agree we disagree but I continue to respect your point of view". I love it when people challenge me, have new ideas that are outside my comfort zone, or simply disagree with my point of view. That's how we learn! It's pretty easy to always give myself high fives, but (and here's the tough thing to swallow) I am not always right. GASP! Conflict, confrontation and discord keep me honest, questioning and humble. Whether it's about whether I should wear a wig or hat when I was bald or if I'm confronting a world renown doctor about my son's cancer treatments, I grow by using my voice. The key is to equally use my ears.

Forgiveness...
Heaven knows I need this. I routinely screw up. Sometimes, it's worse than others, but I am blessed to be around people who subscribe to this thing called "forgiveness".  "My People" as I call my friends and network are amazingly gracious and loving and they forgive me when I screw up. The only return gift needed when you accept someone's forgiveness is to extend that same forgiveness when you are kicked in the teeth.  Every day I pray, "forgive me my trespasses as I forgive those who trespass against us". I can't be forgiven until I forgive others. Suck it up, see the other person's point of view and let it go.

Learn To Keep A Secret...
Oh how I wish I had learned that in my teens and twenties.  Seriously! It seems that the quickest way to spread gossip is to tell someone, "don't tell anyone!" and whooooshhhhhhh it's international headline news.  The bottom line is that you should never have to even say "don't tell anyone" to anyone when you are telling someone something. ;) Simply stated, when something is told to you, don't tell someone else. Use your intuition (which is generally screaming "shut up") and keep it quiet. The translation from our mouths to another's ears is usually all shades of confused and then you end up being quoted incorrectly. Then there's the worst case scenario...you blabbed and it ends up hurting someone you love. My middle name is now "Vegas".

Anything Worthwhile is Worthy of Fighting For It...
We have been told more times than I can count, that Braden was close to dying. I've had no gas in my tank more days than not, and I had a choice. Crawl under my covers and suck my thumb (like I wanted to do) or get up and fight. I'm Irish and I've dished out a lot of "black eyes" along the way. There has been a mountain of collateral damage from me fighting for him, but he is still here with us today. Tomorrow isn't a guarantee, it's a gift. Fight for what (and who) you believe in no matter what the odds or how big the monster is, just do it respectfully and with consideration for others.

Grace...
My mother used to tell me that we show grace, understanding, compassion, and kindness to others not because of who they are, but because of who we are. My mom's middle name was Grace and we named our daughter who died Miranda Grace after her.  Show others grace because you are a good person, not because you believe it will be returned to you. It actually may do quite the opposite and come flying back into your face. Don't let that stop you. It's not about them, it's about you!

God Doesn't Give Us Bad Stuff To Test Us.  

I simply do not believe that the God I believe in gives us pain and suffering. The God I believe in would not give those things to us to test us to see if we are going to remain faithful, or to drive us into His arms to repent. The God I believe in is a God of compassion, grace and love. He is there to give us...

And...Trust

I may be wrong, but I personally do not think that God has my life planned out. I think things happen and it's up to me to choose how I'm going to handle those things. I choose to try to employ all the tools/lessons I just listed above. And most importantly, I try to handle them in a way that I God teaches us through the lessons Jesus taught us on Earth. If even Jesus and his disciples were faced with hardship and agony, how arrogant would it be of me to assume that if God really loved me, He would save me from any crapfest moments??

I trust God. I trust that I will be able to see the better path to handle those hardships and I pray for strength to take that path as it is usually more difficult.  God is my strength and salvation and through all of this crapfest, that point has been repeatedly driven home. My faith has grown exponentially as a result of the hard stuff.

Be Thankful...
It's really that simple.

Just.Be.Thankful.

I once read something that said, "What if all you had tomorrow was what you thanked God for yesterday?" Amen to that!  Be thankful for your blessings amongst your crapfest because sometimes that very crapfest may end up indirectly blessing you if you open your heart and receive.

Gratitude

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...

Again...

Wind chimes!

Yup, this is a real story...not just a hypothetical example....it'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 selfish...you 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 http://deliecehofen.blogspot.com/2013_03_14_archive.html

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 news...it'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.

TREMENDOUS....

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...

Hope...

Love...

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!

TAKE THAT cANCER!!

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