I haven't been to church since I moved to the Kansas City area...that's 16.5 years.
Seriously.
About 17 years ago, I chose to move away from organized religion. This was after I was very active in my former church...Youth Group Leader, Sunday School Teacher, Choir Member, Fellowship Social time hostess signer-upper, painter of walls, helper with communion... and on and on and on.
Eventually, it seemed like a whole lot of hypocrisy to me. People saying they believed one way yet acting the opposite the very second they stepped out of those church doors.
For me, faith became less about sitting in a pew each week,
and became about living the word of God every moment of every day.
And I figured I didn't need to sit in a pew to do that.
Last night, I got a text from one of my best friends asking if I would go to church with her and another of our friends this morning.
I said, "sure".
I thought I was going for her...to support her because today is a pretty tough day for her.
But....what I got was much more than I knew I would receive.
And since I got home, I've been sitting here thinking and trying to wrap my head and heart around the hour I spent in that church.
I visited a church called The Church of The Resurrection and their Pastor is Adam Hamilton. Everyone who goes there tells me how amazing he is an how much I would enjoy his messages.
Blah, blah, blah....whatever. LOL!!!
I was extremely skeptical.
Then came time for Pastor Hamilton to give his sermon.
More skepticism and I could feel an actual bristle on my part.
He did not "have me at hello" like in Jerry McGuire. I was a continued skeptic as he began his sermon.
And then I decided to let myself personalize his message....
and take it in through my heart,
and not just my ears.
Now I'll push the pause button for a minute and just pat myself on the back because I wasn't ready to do that when I walked through those doors.
You hear so much about all of the preachers who are phonies and who say the right words....soak up the fame and glory, mean none of it, and are laughing heartily as they count the cash....
I told you I was skeptical.
I should have mentioned cynical as well. LOL!
It was the scripture that was shared this morning that allowed me to take a brick out of the wall...
And I'm not a big "scripture person"...I have read the bible, I have studied the bible, I have taught the bible...but I cannot randomly quote the bible and its verses from memory off the cuff.
The scripture was this piece from 1 Kings 19...
"....then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper."
That scripture is exactly what I have been saying for years since Braden's diagnosis and continued battle....it's what drives my faith despite the crapfast we are experiencing.
When I heard the scripture, I had an urge to stand up and shout out "AMEN!!!!"
I resisted because that would not have been appropriate in this setting... but oh how I had the urge!! :)
God is not in the wind, earthquake, or fire....He is the gentle whisper.
He is my gentle whisper.
People often ask me where I think my God is given our crapfest lives for the past 12 years since our daughter Miranda's death...
"If He is so wonderful, why doesn't He save us from all of this...why would He have allowed us to go through this....why doesn't He stop doing this to us?"
My response has always been that I don't believe God is doing this. For me, it just doesn't fit God's M.O. of the loving, kind, God who wants us to be all that we can possible be for ourselves and our fellow man.
But that is what I had been taught growing up in my church. "God gives his strongest battles to his strongest soldiers." "Only the good die young" "He is testing you and if you remain steadfast in your faith all will work out well for you"
I just don't believe God gives out crapfest events and I don't think we are rewarded with perfect endings because we are steadfast and continue to follow his word.
I think He blesses us with those things automatically and it's up to us to lean on His words and love in those times and to cling to our faith and our God to see us through whatever happens and however things end.
I don't believe he tests or punishes us by hurting us.
And I don't think God plans out all the bad stuff that happens to us to test us and our faith.
I trust Him completely to see us through the crapfest events.
No matter how bad things get...
For me, my faith is my refuge but it isn't that way for everyone and I respect that.
I don't push my beliefs on anyone, they are mine alone so please don't read this thinking I'm trying to convert anyone or get anyone to go to that church.
This entry is not an attempt at conversion.
It is me writing to make sense of it and share what I learned based off of my background experiences. That is what each of us do...we take in a message, mix it with our own experiences and then, sometimes, we have an "aha" moment as a result.
That happened to me today...I had an "aha" moment as a result of this scripture.
That scripture made me smile.
I smiled because it's my mantra.
He is the gentle whisper....not the wind, earthquake, or fire.
For me, He is peace and grace.
Pastor Hamilton then spoke about each of us finding a place that is our own "Mount Sinai"...a place where we can go to find God.
I smiled again...and then tears rolled down my face just as they are doing right now as I type this.
I have three Mount Sinai places...
The first and most wonderful is found in the eyes of my nine year old son.
Braden is a special soul....He knows God although he has autism and has no concept of what God is. I believe God speaks autism and He has shown me that so many times.
When I look into Braden's eyes, I see the fight of a tiger, the courage of an army, a peace I cannot describe, and....the love of God.
It is where I "feel" God.
My second Mount Sinai is the sky.
It is where I "see" my angels. They send me signs like streams of sunshine, heart shaped clouds, and sundogs.
They bring me peace and happiness at just the right times.
They are my hugs and kisses from Heaven that I can't get on Earth any longer.
Thank you to my mom and my sweet daughter Miranda Grace for sending them. :)
And my third Mount Sinai is found during my prayers. It is where I "hear" God and our angels.
We need to allow silence to speak to us.
In my prayers, I shut out the outside world and am quiet in my mind and heart...
and I allow silence to be filled with grace.
No, God doesn't actually verbally speak to me...but when I shut down the outside world and allow my mind to just focus on my prayers I can then listen...
I think God and our angel's voices are the intuition we have about things...the clarity...the feeling that "THIS" is the right thing.
And those messages of clarity and grace give me HOPE!
This is why I sometimes disappear from email, texting, social media, my blog, friends and family...
I need silence to allow myself to "hear".
Pastor Hamilton's message spoke to me today.
And I allowed myself to hear it.
I am grateful for that gift.
I am grateful for the opportunity to grow and become open to that growth.
And I'm grateful for the friends who suggested and invited me to go to church with them this morning.
My heart is more full...
My mind more clear....
My Hope even stronger...
And my faith is unbreakable.
The verdict is still out on this whole organized religion thing, Deliece Hofen, and whether we will ever be compatible again...
...BUT....messages that bring one peace are worth hearing....
There are a lot of places to find those kinds of messages....
a good book,
meaningful quotes,
a chat during wine with a friend,
during detours,
in the hearts of those we love the most,
and maybe even church. ;)
Time will tell on the last one.
Sunday, November 24, 2013
Tuesday, November 12, 2013
More Than A Holiday...
Maybe Thanksgiving should be more than a holiday.
Maybe it should be a way of life.
It's possible that in our quest to live life to the fullest and make the most of everything we have available to us, we forget...
to be thankful for what we have.
I'm guilty.
If we are each honest with ourselves, we are all guilty.
I'm not talking about not being sad, not hurting, ignoring those feelings of anything less than happiness.
Acknowledging and dealing with those feelings is healthy, warranted and needed.
I'm talking about making that our focus.
Complaining about the long line at the checkout at the grocery store, the ridiculous drivers on the freeway cutting us off, snowy/rainy days, the government...
Annoyances.
I still complain about those things and I voice my opinion (as we all know)...
And that's okay.
But...it's also important to see the other side of the coin about those things.
Acknowledge the "yin and yang" of things in the world.
The flip side is that we have food at a store and we can go get it anytime we want, we have vehicles to carry us to wherever we want to go and we can travel feeling safe and secure in our freedom to do so, we have precipitation that allows our food to grow and our kids to play in....
I'm sure I'll think of an upside of government if given a few days. ;)
Everything has two sides...an up and a down.
And while it's okay to complain about the down, I think we should focus on the up.
I do that far more after Braden's cancer diagnosis.
One of the things going around on Facebook in November is folks posting something they are Thankful for each day in the month of November.
I love that idea and I love reading others' posts about what they are thankful for...it's enlightening and a good reminder to be appreciative of our gifts.
I once read something that said, "What if all we had tomorrow was what we thanked God for today?"
That simple phrase changed me in more ways than I can tell you.
What if....
What if every day we stopped to just be thankful...
instead of wishful....
instead of asking for...
just to be quiet with our hearts and minds and be grateful.
I took a technology break for several days last week. Few emails...I did do a few for work and medical purposes, no social media...
And I allowed myself to get "centered" again.
I spent my time simply being grateful...
As I waited for results from Braden's bone marrow aspirate which would ultimately determine if he was headed into transplant which will, without a doubt, change his quality of life if not kill him.
It was a lot to think about and I had a lot I wanted to ask for as I prayed.
But I didn't ask for anything.
I hoped....and I prayed hoping I would have strength and courage to continue to fight...
But mostly, I prayed hoping I would have strength and courage to accept....
even if I didn't want to accept what was offered to me.
Everyone who knows me knows I am a fighter...to a fault.
But somehow during that break, as I looked into my son's eyes and felt his heart, I simply needed
grace...
understanding...
and the ability to accept.
To my shock, we got good news. I was so prepared for bad news that it took me half a week, numerous emails from our teams telling me to accept it and that it was valid, and then labs yesterday to confirm it before I could accept it...
I guess I forgot that acceptance could also be acceptance of good news.
There's a whole lot of irony there. And a whole lot of stubborn Irish genes at work as well! :)
And I give thanks for that lesson.
An attitude of gratitude...
every day....
Gratitude for:
the yin and yang, of everything...
my "people", those I call family and friends...
our daily bread...
forgiveness....
continual learning and growth...
balance...
and hope.
It takes far more strength to be thankful than to be wishful.
It's not easy and I'm certainly not perfect at it. As one of my very wise friends would say, "I'm a work in progress".
At the risk of sounding reminiscent of The Grinch in his story... ;)
maybe this holiday means a little bit more,
more than a day or a month,
maybe it should be a way of life.
Every day should be a day of giving thanks.
Maybe it should be a way of life.
It's possible that in our quest to live life to the fullest and make the most of everything we have available to us, we forget...
to be thankful for what we have.
I'm guilty.
If we are each honest with ourselves, we are all guilty.
I'm not talking about not being sad, not hurting, ignoring those feelings of anything less than happiness.
Acknowledging and dealing with those feelings is healthy, warranted and needed.
I'm talking about making that our focus.
Complaining about the long line at the checkout at the grocery store, the ridiculous drivers on the freeway cutting us off, snowy/rainy days, the government...
Annoyances.
I still complain about those things and I voice my opinion (as we all know)...
And that's okay.
But...it's also important to see the other side of the coin about those things.
Acknowledge the "yin and yang" of things in the world.
The flip side is that we have food at a store and we can go get it anytime we want, we have vehicles to carry us to wherever we want to go and we can travel feeling safe and secure in our freedom to do so, we have precipitation that allows our food to grow and our kids to play in....
I'm sure I'll think of an upside of government if given a few days. ;)
Everything has two sides...an up and a down.
And while it's okay to complain about the down, I think we should focus on the up.
I do that far more after Braden's cancer diagnosis.
One of the things going around on Facebook in November is folks posting something they are Thankful for each day in the month of November.
I love that idea and I love reading others' posts about what they are thankful for...it's enlightening and a good reminder to be appreciative of our gifts.
I once read something that said, "What if all we had tomorrow was what we thanked God for today?"
That simple phrase changed me in more ways than I can tell you.
What if....
What if every day we stopped to just be thankful...
instead of wishful....
instead of asking for...
just to be quiet with our hearts and minds and be grateful.
I took a technology break for several days last week. Few emails...I did do a few for work and medical purposes, no social media...
And I allowed myself to get "centered" again.
I spent my time simply being grateful...
As I waited for results from Braden's bone marrow aspirate which would ultimately determine if he was headed into transplant which will, without a doubt, change his quality of life if not kill him.
It was a lot to think about and I had a lot I wanted to ask for as I prayed.
But I didn't ask for anything.
I hoped....and I prayed hoping I would have strength and courage to continue to fight...
But mostly, I prayed hoping I would have strength and courage to accept....
even if I didn't want to accept what was offered to me.
Everyone who knows me knows I am a fighter...to a fault.
But somehow during that break, as I looked into my son's eyes and felt his heart, I simply needed
grace...
understanding...
and the ability to accept.
To my shock, we got good news. I was so prepared for bad news that it took me half a week, numerous emails from our teams telling me to accept it and that it was valid, and then labs yesterday to confirm it before I could accept it...
I guess I forgot that acceptance could also be acceptance of good news.
There's a whole lot of irony there. And a whole lot of stubborn Irish genes at work as well! :)
And I give thanks for that lesson.
An attitude of gratitude...
every day....
Gratitude for:
the yin and yang, of everything...
my "people", those I call family and friends...
our daily bread...
forgiveness....
continual learning and growth...
balance...
and hope.
It takes far more strength to be thankful than to be wishful.
It's not easy and I'm certainly not perfect at it. As one of my very wise friends would say, "I'm a work in progress".
At the risk of sounding reminiscent of The Grinch in his story... ;)
maybe this holiday means a little bit more,
more than a day or a month,
maybe it should be a way of life.
Every day should be a day of giving thanks.
Friday, November 8, 2013
To Believe...or Not To Believe...
To Believe or Not To Believe...
That is the question...
We just got really good news about Braden.
July 8, our 13th anniversary, we were told that Braden had several weeks to a few months left to live. There was nothing to do. Our teams in Kansas City and Philly had never seen a child survive with treatment induced MDS that had fought neuroblastoma.
MDS is a pre-leukemia that will turn into AML that was caused by the treatments he has had to cure his neuroblastoma.
I posted that on our caringbridge site and a few people reached out who knew two kiddoes in the US who had made it through treatments and had shown no evidence of MDS or neuroblastoma.
I connected our teams with the teams that worked with those kids and they chatted. A decision was made to put Braden on a medication called Azacytadine. Vidaza is the product name. It's a chemo that is injected at three week intervals...3 shots every night for seven nights in a row.
He has been so brave about those shots.
SO brave!! He never cries, he is amazing!!
He has had three rounds of Vidaza and we were preparing for a fourth, but He didn't make counts. So we tried again...and again...and he has still not made counts.
His white blood cells were what was suppressed...they were very low and that can be a sign of progression of the MDS.
We did a bone marrow aspiration so we could have cells to count and see if his disease was progressing and if so, how much.
And we met with our transplant team to discuss what we would do for transplant (the only curative treatment for his MDS...also the treatment that could allow his neuroblastoma to come back due to donor cells that don't have the ability to keep dormant neuroblastoma cells quiet if any are there).
We are fortunate and we do have a bone marrow donor..there was ONE match in the registry...ONE.
I had gone to the store and bought everything I would need to have for 30-60 days which is about how long transplant will take in the hospital. Locked away in the hospital for that length of time.
I had our carpets cleaned NOW because you can't do it right before you come home from transplant...it could create mold and fungus in the carpet and that could kill him. He is taken back to having the immune system of a fetus after the chemo that is given to him to kill the cancer cells.
And then our basement flooded, destroying the carpet.
Awesome.
You also can't have live plants, root vegetables, go outside without a mask, go in crowds, have guests in your home that have been exposed to sickness....and the list goes on and on and on and on....for 100 days following transplant.
I was ready... I had everything ready to go so when we got the result back and found out the disease was progressing, we could enter the hospital and get started.
I ordered Christmas pajamas, I had Christmas gifts purchased, Christmas cards ready to go, family pictures had been taken...
Everything was ready,
but me.
Transplant could kill him and it will absolutely, positively change his long term health. He WILL have side effects and he will NEVER be the same again...he will have some level of Graft Versus Host Disease... Exactly how he will be impaired is yet to be seen. And if the neuroblastoma comes back...
it's going to be very bad because trying to fight it after his body is weakened from transplant...
not a good prognosis.
We waited for six very long days to get results and yesterday we got them.
I was NOT ready for what we heard.
In August and June when we did his bone marrow tests, 200 cells were sampled and 18% of them showed MDS cells.
They initially sampled 500 cells with this test...zero of those cells were MDS cells.
Not believing that, they sampled 500 more.
Zero of those cells showed MDS.
Zero.
And the result we got back was that Braden's MDS is stable to better.
BETTER???!
I had no idea it could GET better? I don't think that was anyone's hope or goal...I think every person on our medical teams in both KC and Philly were hoping to just slow it down. They never mentioned Vidaza could actually kill the cells!
After asking our oncologist 100 questions, I have learned that the sample could just have been a sample that didn't show any..but there could still be cells there. SO we will have to sample over time and see if it remains zero.
And hope!
I should be thrilled...over the moon...happy beyond belief...
but I'm waiting for the other shoe to drop.
Waiting for the phone call saying, "about that sample..."
"we mixed up the results with someone else..."
"we are really sorry but we made an error in the lab..."
I'm a hopeful pessimist.
I want to believe it, but my guarded momcology heart says "don't fall for it..."
Our oncologist keeps telling me to be happy.
For the record, I have smiled...and then I stop.
I took the boys out for pizza last night to celebrate and I was staring at Braden while he and Zach played. My heart hurt so much because I was so conflicted.
And right then, I heard the words "Just Breathe" come across the sound system.
Faith Hill's song was playing.
I think that was a sign from our angels that I need to "just breathe".
I just started laughing and the boys looked at me like was insane. Okay...they could be right. ;)
I'm trying to breathe...counts on Monday will tell whether or not his counts are still down. They believe it has likely been a virus that suppressed his white count (he was sick for a few days) and that the Vidaza had a lasting effect in suppressing the counts.
If we get better counts on Monday, I will breathe easier.
If not, I'm likely to ask for a bone marrow biopsy rather than just an aspiration.
The past six years of our cancer battles have led me to believe completely that the power of positive thoughts and prayers can change the world.
I am reminded of Matthew 17:20
..."For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”
I stand in awe of God. And I am grateful beyond words!
TAKE THAT cANCER!!
That is the question...
We just got really good news about Braden.
July 8, our 13th anniversary, we were told that Braden had several weeks to a few months left to live. There was nothing to do. Our teams in Kansas City and Philly had never seen a child survive with treatment induced MDS that had fought neuroblastoma.
MDS is a pre-leukemia that will turn into AML that was caused by the treatments he has had to cure his neuroblastoma.
I posted that on our caringbridge site and a few people reached out who knew two kiddoes in the US who had made it through treatments and had shown no evidence of MDS or neuroblastoma.
I connected our teams with the teams that worked with those kids and they chatted. A decision was made to put Braden on a medication called Azacytadine. Vidaza is the product name. It's a chemo that is injected at three week intervals...3 shots every night for seven nights in a row.
He has been so brave about those shots.
SO brave!! He never cries, he is amazing!!
He has had three rounds of Vidaza and we were preparing for a fourth, but He didn't make counts. So we tried again...and again...and he has still not made counts.
His white blood cells were what was suppressed...they were very low and that can be a sign of progression of the MDS.
We did a bone marrow aspiration so we could have cells to count and see if his disease was progressing and if so, how much.
And we met with our transplant team to discuss what we would do for transplant (the only curative treatment for his MDS...also the treatment that could allow his neuroblastoma to come back due to donor cells that don't have the ability to keep dormant neuroblastoma cells quiet if any are there).
We are fortunate and we do have a bone marrow donor..there was ONE match in the registry...ONE.
I had gone to the store and bought everything I would need to have for 30-60 days which is about how long transplant will take in the hospital. Locked away in the hospital for that length of time.
I had our carpets cleaned NOW because you can't do it right before you come home from transplant...it could create mold and fungus in the carpet and that could kill him. He is taken back to having the immune system of a fetus after the chemo that is given to him to kill the cancer cells.
And then our basement flooded, destroying the carpet.
Awesome.
You also can't have live plants, root vegetables, go outside without a mask, go in crowds, have guests in your home that have been exposed to sickness....and the list goes on and on and on and on....for 100 days following transplant.
I was ready... I had everything ready to go so when we got the result back and found out the disease was progressing, we could enter the hospital and get started.
I ordered Christmas pajamas, I had Christmas gifts purchased, Christmas cards ready to go, family pictures had been taken...
Everything was ready,
but me.
Transplant could kill him and it will absolutely, positively change his long term health. He WILL have side effects and he will NEVER be the same again...he will have some level of Graft Versus Host Disease... Exactly how he will be impaired is yet to be seen. And if the neuroblastoma comes back...
it's going to be very bad because trying to fight it after his body is weakened from transplant...
not a good prognosis.
We waited for six very long days to get results and yesterday we got them.
I was NOT ready for what we heard.
In August and June when we did his bone marrow tests, 200 cells were sampled and 18% of them showed MDS cells.
They initially sampled 500 cells with this test...zero of those cells were MDS cells.
Not believing that, they sampled 500 more.
Zero of those cells showed MDS.
Zero.
And the result we got back was that Braden's MDS is stable to better.
BETTER???!
I had no idea it could GET better? I don't think that was anyone's hope or goal...I think every person on our medical teams in both KC and Philly were hoping to just slow it down. They never mentioned Vidaza could actually kill the cells!
After asking our oncologist 100 questions, I have learned that the sample could just have been a sample that didn't show any..but there could still be cells there. SO we will have to sample over time and see if it remains zero.
And hope!
I should be thrilled...over the moon...happy beyond belief...
but I'm waiting for the other shoe to drop.
Waiting for the phone call saying, "about that sample..."
"we mixed up the results with someone else..."
"we are really sorry but we made an error in the lab..."
I'm a hopeful pessimist.
I want to believe it, but my guarded momcology heart says "don't fall for it..."
Our oncologist keeps telling me to be happy.
For the record, I have smiled...and then I stop.
I took the boys out for pizza last night to celebrate and I was staring at Braden while he and Zach played. My heart hurt so much because I was so conflicted.
And right then, I heard the words "Just Breathe" come across the sound system.
Faith Hill's song was playing.
I think that was a sign from our angels that I need to "just breathe".
I just started laughing and the boys looked at me like was insane. Okay...they could be right. ;)
I'm trying to breathe...counts on Monday will tell whether or not his counts are still down. They believe it has likely been a virus that suppressed his white count (he was sick for a few days) and that the Vidaza had a lasting effect in suppressing the counts.
If we get better counts on Monday, I will breathe easier.
If not, I'm likely to ask for a bone marrow biopsy rather than just an aspiration.
The past six years of our cancer battles have led me to believe completely that the power of positive thoughts and prayers can change the world.
I am reminded of Matthew 17:20
..."For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”
I stand in awe of God. And I am grateful beyond words!
TAKE THAT cANCER!!
Sunday, October 20, 2013
Unforgettable...
On Friday, we got a call from Sporting KC asking if Braden would come to their awards banquet and present the Humanitarian of the Year Award to Aurelien Collin.
He would need to stand on a stage with lights shining at him in front of a crowd of people and hand an award to Aurelien with Cliff Illig (owner of SKC) and Coach Vermes. And he would need to "dress up".
Now that request hit every single "no way" button for Braden. He has autism and I wasn't sure he was going to have anything to do with this, but I remembered the night he was honored in the Victory Suite and he hopped up and waved to everyone in the stadium like he was the Pope. It was PRECIOUS and I was so proud of him!! The crowd ROARED but he continued to have a blast!!
So I talked to Brian and we figured we would try it.
A once in a lifetime detour! And a major challenge for his autism.
It was on the field at the stadium and it was beautiful! A little chilly for Braden even with the heaters, so we stayed inside and played until award time but when it was time, we went outside.
He wore jeans (which is a major victory) and a button down shirt (another, "you have to be kidding me...he's really doing this moment")! You couldn't see his shirt because it was chilly enough we had him wear his coat on stage but he did it!! BIGGEST BOY!! AND...he didn't even fuss...he was excited to wear his jeans!!!
WHAT???
SO not what usually happens, tears and "I not" fixed with me telling him "just until and then we will get a present".
Not yesterday though...what a big, big boy!!
As we were getting ready to go out to the dinner/stage area on the field, Braden started with "I not like this....I not want to go..." I was worried but Brandi, the community relations person came in and helped me distract him. I told him we would get to give Aurelien a trophy and that was a BIG incentive. Braden LOVES trophies!!
He talks about trophies all the time. So much that one detour day this summer, he and two of his adult friends, Ms Kim and Ms Jo, stopped on the way home and got trophies for Braden and Zach! Now they each have a "best big brother and best little brother trophy". SOO cool!! In fact, for my birthday, Braden told Brian he wanted to get me a trophy so they had a trophy made for mom! :)
Priceless!!
The first person he got to see was CJ Sapong. CJ and Braden were featured in our 2014 A Year of Hope Calendar with Sporting KC. And CJ is AWESOME!! He is soo funny and silly! B had a great time with him so when he got to see CJ again, he was very excited!
 |
| During the Calendar Shoot |
 |
| Last night! |
Well, we had arranged that I could go on stage with him if he wouldn't do it, but when we got there, I asked Mr. Illig to hold his hand and take him up on stage.
And Braden walked up with him!
ALONE!
He did it!!
Okay, he fell on the stair, but Mr. Illig had him and helped get him back upright (it was a really tall stair and he didn't expect that...plus he has his mother's graceful moves) ;)
The emcees talked about Braden and that we started Braden's Hope and everyone clapped for B...it was SO very sweet!!!
He then stood on the stage between Mr. Illig and Coach Vermes and held the award. Aurelien came on stage and knelt down beside Braden. He put his head down and Braden rubbed his bald head!
 |
| Mr. Illig to Braden's right, and Coach Vermes talking to B on stage |
SO cool!!
It was at that point that the tears began to flow for mom.
Absolutely priceless!
 |
| Aurelien Collin smiling at B and sweetly patting his shoulder. WOW! |
Everyone clapped and they took pictures! It was just like Braden Hofen was any other kid!
ANY OTHER KID!!
Being able to type those words is more of a gift than I can describe! He DID IT!!
He really did it!!
Aurelien took Braden's hand and walked him off of the stage...making sure he navigated the step safely (because he had had his own toe clip on the way up).
As he held his hand, He asked the staff around him if he could give the award to Braden.
I heard it and tried to process it, but instead just broke into a jaw dropping open mouth, tear filled pose.
And then, he bent down...handed the award to Braden and asked him to keep it for him.
 |
Braden's entire face lit up!!
A TROPHY!!!
Braden thanked him and clutched it to his chest with both hands. The smile hasn't left his face.
What an amazing thing to do!! Just unreal!! WOW!!
This morning, the first thing that Braden said when he woke up was...
"MOM...I got a trophy! Where is my trophy?" So we went downstairs to hold it again!
Aurelien Collin, Humanitarian of the Year?
I would say YES!!!
That was an extremely selfless act Aurelien Collin!! You are AMAZING!!
Thank you to ALL of the Sporting Organization...you are unbelievably gracious to all of our kids!!
And you have made Braden smile more times than I can count!
WOW!!!
Wednesday, October 16, 2013
Fevers...
Fever...strikes fear in the heart of every oncology patient in the world.
Why would a word like "fever" be such a bad word...
why would a FEVER frighten you?
Simple.
If a temp gets to a certain parameter (in our case 101.5) and you have a central line for therapies (like a Hickman or Port) you have to go to the hospital.
Even though its just a fever!
It's not like when the rest of us get a fever...you don't just rest and take some Tylenol...in fact, you do quite the opposite.
This particular fever started with Zach on Saturday. Immediately, we separated the boys in the hope of not transmitting Zach's germs to Braden.
No such luck.
A series of events kicks into play once Braden gets a fever. Braden's started this morning when I woke him up for school and I could instantly tell he had a low grade temp of around 100.
Momcologists become thermometers because that temp means in or out of the hospital...it means the difference between being discharged from the hospital after a stay or continuing to live at the hospital.
I can literally feel Braden's temple with my cheek and tell within a couple decimal points exactly what his temp is. We've lived this 24/7 for almost 6 years and I lived for years in the hospital laying right beside Braden feeling his head with my cheek every five minutes or so to check for the fever in hopes we could go home.
The best four letter in the world...HOME.
And as a result, I've become a thermometer. ;)
The first thing you do when you feel any warmth, is confirm it with a thermometer to see "the number". You hold your breath while that thing ticks away and then you take a deep breath while hoping it's less than 101.5.
This morning, it was 100.1.
WHEW!
Based on that number, I headed down the left side of the "Fever Action Plan Flow Chart" rather than the right side. The left side is a much shorter side because the right begins with call the hospital and tell them you are coming in.
There's actually one question to answer to decide which chart to even pick which chart to use..."is Brian in town or out of town".
If it's the "Brian Is In Town Chart", everything is going to be simpler. If it's the "Brian Is Out Of Town Chart", things are going to be much more complicated with me having to ask friends to help (which I am better at now, but still stink at it).
The very first thing I do is begin the "Fever Ward Off Procedures".
It's at the top of both flow charts...
in bold print.
Those procedures are not unlike waving a dead chicken in the wind while facing west...or whatever the voodoo/mojo deal is.. LOL!!
Step one, kiss him and say a prayer.
Step two, give him his First Tiger and Second Tiger so he can hold them and feel better.
Step three, get all the covers off of him and if he has on pants, take them off. No reason to have blankets and heavy pants to help heat him up (and it actually CAN make a difference).
Step four, stop snuggling tightly because your body heat doesn't help. You only have to do this until the fever goes down or it hits 101.5...at 101.5 it's already too late so just snuggle.
Step five, alert school and find a ride for Zach (so much easier if we are using the "Brian Is In Town Chart").
Step six, post on Facebook...
Seriously.
Get people sending positive thoughts and prayers.
It works!!
It really does!
Step seven, take a shower because it may be the last one you will be taking with warm water that actually comes out of the faucet at more than drip for several days in the event he is admitted to the hospital.
Step eight, begin packing procedures which I will describe in just a bit because it's pretty complicated. LOL!
Lastly, step nine...wait for the temp to do what it's going to do while praying and hoping it doesn't hit the magic number...important to keep the covers off and continue to pray.
Once it hits 101.5, we MUST go in to have cultures taken for each lumen of the central line because a bacteria could be growing in the line and that can be deadly. They can quickly go septic and die which is pretty scary.
If we are lucky, it's between the hours of 8:00 and 4:00, we can go to clinic and avoid the ER.
It we are not lucky, we have to face the dreaded ER.
Another reason to fear a fever.
The ER folks get us into a private room to wait our turn fairly quickly after check in so we are not exposed to everything else that is in the waiting room since our kids have a weakened immune system BUT it's not quick enough. I once had a lady behind me in line who kept hitting me in the back of the legs with the ER's wheelchair her son was in while he was throwing up violently into a bucket. I got that she was in a hurry but hitting me and exposing us all to the splattering wasn't helping it move faster.
And this was when Braden had no white blood cells. Every ER visit is a prime opportunity to pick up other fun illnesses. Like the lady in front of me one day who asked her son to say hi to Braden...he did and then very sweetly reached up and touched his leg to be reassuring and nice. It was very kind...
Then she told me her son had meningitis and they were back "again" because it kept flaring back up.
Awesome.
ER visits can make a bad situation, deadly.
I'm still trying to get two Haz-Mat suits to wear into the ER.
Not kidding.
When you get to the hospital, they access the central line. Okay...again this is where you pray for clinic and not ER. The ER staff is NOT used to accessing and probably received training on it "one time" but they don't do it routinely.
The shaking hands and instructions on the tray are the first clue they have...
no clue.
Bonus Tip #1...never allow a resident or nurse in training to access your child's port.
NEVER.
I won't even go into that story. Just don't do it.
SO...I refuse to allow the ER staff to access and ask them to find someone in the ER who has worked in oncology (there are some there) OR I ask them to call someone on the oncology floor to do it. Braden's a tricky access and I'm not going to let someone poke him 8 times to get it. This always ends up badly with hurt feelings on the part of the ER staff and I apologize and tell them it's not personal and that I'm just not nice.
Still, it still never ends well but I'm willing to have some "awkward time" in trade for less pain for Braden.
They draw the culture, and then we wait for a white blood cell count. If it's below a certain number and there are not enough white blood cells to fight infection, he begins a regimine of antibiotics while they bake the germs to see exactly which ones they are...then based on that, his drugs may change so it can address the specific type of bacteria in the line.
If his white blood cells are okay, we get a dose of IV antibiotics and then go home while they bake the cultures to see if a bacteria appears.
IF it does appear, they call you at any time night or day and you have to go inpatient for at least 48 hours.
If they don't call you are in the clear, but those 48 hours of baking bacteria makes you nervous and cringe every time the phone rings.
If the white blood cells are low we get admitted.
IF we are really lucky once admitted, we go home in 48 hours meaning the fever breaks and the antibiotics seem to be doing their job and we can do the remainder of the doses from home!
If we are NOT lucky and the fever continues, we stay put until it does stop. We've been inpatient for the full 14 days of doses many times.
Fevers can mean death. A major reason to be terrified. Braden has many severe antibiotic allergies so it's always a tough spot to try to find an antibiotic that will work for him, which is scary.
Oh and you cannot give any Tylenol until the cultures are drawn so they feel MISERABLE and you can't help.
And you can never give Motrin because it can cause them to bleed out with a central line. I actually had an ER doctor offer it to Braden once...I reminded her that was a bad idea. ;)
She said, "oh that's right...I forgot!"
Whoops!!
(that's certainly terrifying)
Then there's the packing. Not a terrifying reason but a big one to not enjoy fevers. Forget something when you are on the "Brian Is Out Of Town Flow Chart" and you are out of luck because you aren't going to get it for several days.
I used to always keep a suitcase packed and in the back of my car. I haven't had that in my car for a long time BUT I do have one packed and ready to go at all times in the closet because there's no time to throw things into a suitcase when you have to rush to the hospital for those cultures to be drawn.
When Zach was smaller, I used to even have a bag packed for him so the "lucky person" I was able to beg to keep him would be able to grab it for him.
Thankfully, he's old enough that he can now pack his own.
Well...he might forget his clothes and a toothbrush...but he would NEVER forget his i-Pod or Nerf Guns...
gotta get the important stuff first!! ;)
Then there's my backpack.
I always have a backpack filled with toys, books, snacks, IV line dressing covers, a ziploc baggie, and a change of clothes for both of us. I take it with us every place we go no matter what day.
(The change of clothes isn't for overnight...it's in the event of throwing up. So is the baggie. We learn from experience!)
That bag is ready all the time.
There are still two more bags which must come with us. First, Braden's backpack of tigers and blankets...he would cry the entire time without them. And his bag of electronics to entertain him (dvd player and iPad)...
or I would cry the entire time without them. ;)
It's good to have something to occupy the endless hours. Never depend on hospital electronics.
EVER! :)
Another reason to dislike fevers...they ALWAYS happen on a holiday or special event.
Tomorrow is school picture day.
He's been sick for pictures Every.Single.Year....
except for last year. We got lucky last year. The problem is that IF he misses pictures day tomorrow, we have to do retake day which isn't that big of a deal except we learned a long time ago to never expect tomorrow.
I don't know why I need those silly school pictures, but I do. It just makes me mad that cANCER and his cANCER hardware could stop them from happening.
I just want to see his sweet picture in the yearbook, Braden Hofen 3rd Grader.
Could be the last one.
His temp is down to 98.5 right now with no Tylenol having been given...
(told you posting for thoughts and prayers works) so I'm hopeful we can make pictures.
Braden's Army rocks!
TAKE THAT cANCER!
And the biggest reason we fear fevers is because it could mean the cancer is raging again. Fever is your body's way to build up warriors to kill foreign invaders inside the body. His is bumping up because he has a cold...the cold is obvious....
but...
it's the first place your head and heart go with a fever.
What if it's not just the cold?
What if his body is fighting more cancer cells too.
So for now, we wait, monitor the temp, hope it doesn't spike so we can stay on the left side of the "Fever Action Plan Flow Chart" and that he can do pictures tomorrow. No fever since 8:00 am so far.
Because his temp is down, we are sitting on the couch, snuggling with his favorite blankie watching Tom and Jerry while I type.
That's the good thing about fevers, I get to be with my baby all day long.
The BEST thing about fevers...he's still alive to HAVE a fever.
So even though it terrifies me, annoys me, we are blessed to have this stupid fever.
It's a strange thing to be grateful for...and it's crazy to have to be grateful for the smiler pile of crap but I am.
Please keep sending hope the fever stays quiet and we get to stop at the initial box on the flow chart...
Maybe someday....years from now he will have a "normal fever" without cANCER in his life, without a central line...just a missed day of school.
Now THAT would be a VERY happy day!!!
Why would a word like "fever" be such a bad word...
why would a FEVER frighten you?
Simple.
If a temp gets to a certain parameter (in our case 101.5) and you have a central line for therapies (like a Hickman or Port) you have to go to the hospital.
Even though its just a fever!
It's not like when the rest of us get a fever...you don't just rest and take some Tylenol...in fact, you do quite the opposite.
This particular fever started with Zach on Saturday. Immediately, we separated the boys in the hope of not transmitting Zach's germs to Braden.
No such luck.
A series of events kicks into play once Braden gets a fever. Braden's started this morning when I woke him up for school and I could instantly tell he had a low grade temp of around 100.
Momcologists become thermometers because that temp means in or out of the hospital...it means the difference between being discharged from the hospital after a stay or continuing to live at the hospital.
I can literally feel Braden's temple with my cheek and tell within a couple decimal points exactly what his temp is. We've lived this 24/7 for almost 6 years and I lived for years in the hospital laying right beside Braden feeling his head with my cheek every five minutes or so to check for the fever in hopes we could go home.
The best four letter in the world...HOME.
And as a result, I've become a thermometer. ;)
The first thing you do when you feel any warmth, is confirm it with a thermometer to see "the number". You hold your breath while that thing ticks away and then you take a deep breath while hoping it's less than 101.5.
This morning, it was 100.1.
WHEW!
Based on that number, I headed down the left side of the "Fever Action Plan Flow Chart" rather than the right side. The left side is a much shorter side because the right begins with call the hospital and tell them you are coming in.
There's actually one question to answer to decide which chart to even pick which chart to use..."is Brian in town or out of town".
If it's the "Brian Is In Town Chart", everything is going to be simpler. If it's the "Brian Is Out Of Town Chart", things are going to be much more complicated with me having to ask friends to help (which I am better at now, but still stink at it).
The very first thing I do is begin the "Fever Ward Off Procedures".
It's at the top of both flow charts...
in bold print.
Those procedures are not unlike waving a dead chicken in the wind while facing west...or whatever the voodoo/mojo deal is.. LOL!!
Step one, kiss him and say a prayer.
Step two, give him his First Tiger and Second Tiger so he can hold them and feel better.
Step three, get all the covers off of him and if he has on pants, take them off. No reason to have blankets and heavy pants to help heat him up (and it actually CAN make a difference).
Step four, stop snuggling tightly because your body heat doesn't help. You only have to do this until the fever goes down or it hits 101.5...at 101.5 it's already too late so just snuggle.
Step five, alert school and find a ride for Zach (so much easier if we are using the "Brian Is In Town Chart").
Step six, post on Facebook...
Seriously.
Get people sending positive thoughts and prayers.
It works!!
It really does!
Step seven, take a shower because it may be the last one you will be taking with warm water that actually comes out of the faucet at more than drip for several days in the event he is admitted to the hospital.
Step eight, begin packing procedures which I will describe in just a bit because it's pretty complicated. LOL!
Lastly, step nine...wait for the temp to do what it's going to do while praying and hoping it doesn't hit the magic number...important to keep the covers off and continue to pray.
Once it hits 101.5, we MUST go in to have cultures taken for each lumen of the central line because a bacteria could be growing in the line and that can be deadly. They can quickly go septic and die which is pretty scary.
If we are lucky, it's between the hours of 8:00 and 4:00, we can go to clinic and avoid the ER.
It we are not lucky, we have to face the dreaded ER.
Another reason to fear a fever.
The ER folks get us into a private room to wait our turn fairly quickly after check in so we are not exposed to everything else that is in the waiting room since our kids have a weakened immune system BUT it's not quick enough. I once had a lady behind me in line who kept hitting me in the back of the legs with the ER's wheelchair her son was in while he was throwing up violently into a bucket. I got that she was in a hurry but hitting me and exposing us all to the splattering wasn't helping it move faster.
And this was when Braden had no white blood cells. Every ER visit is a prime opportunity to pick up other fun illnesses. Like the lady in front of me one day who asked her son to say hi to Braden...he did and then very sweetly reached up and touched his leg to be reassuring and nice. It was very kind...
Then she told me her son had meningitis and they were back "again" because it kept flaring back up.
Awesome.
ER visits can make a bad situation, deadly.
I'm still trying to get two Haz-Mat suits to wear into the ER.
Not kidding.
When you get to the hospital, they access the central line. Okay...again this is where you pray for clinic and not ER. The ER staff is NOT used to accessing and probably received training on it "one time" but they don't do it routinely.
The shaking hands and instructions on the tray are the first clue they have...
no clue.
Bonus Tip #1...never allow a resident or nurse in training to access your child's port.
NEVER.
I won't even go into that story. Just don't do it.
SO...I refuse to allow the ER staff to access and ask them to find someone in the ER who has worked in oncology (there are some there) OR I ask them to call someone on the oncology floor to do it. Braden's a tricky access and I'm not going to let someone poke him 8 times to get it. This always ends up badly with hurt feelings on the part of the ER staff and I apologize and tell them it's not personal and that I'm just not nice.
Still, it still never ends well but I'm willing to have some "awkward time" in trade for less pain for Braden.
They draw the culture, and then we wait for a white blood cell count. If it's below a certain number and there are not enough white blood cells to fight infection, he begins a regimine of antibiotics while they bake the germs to see exactly which ones they are...then based on that, his drugs may change so it can address the specific type of bacteria in the line.
If his white blood cells are okay, we get a dose of IV antibiotics and then go home while they bake the cultures to see if a bacteria appears.
IF it does appear, they call you at any time night or day and you have to go inpatient for at least 48 hours.
If they don't call you are in the clear, but those 48 hours of baking bacteria makes you nervous and cringe every time the phone rings.
If the white blood cells are low we get admitted.
IF we are really lucky once admitted, we go home in 48 hours meaning the fever breaks and the antibiotics seem to be doing their job and we can do the remainder of the doses from home!
If we are NOT lucky and the fever continues, we stay put until it does stop. We've been inpatient for the full 14 days of doses many times.
Fevers can mean death. A major reason to be terrified. Braden has many severe antibiotic allergies so it's always a tough spot to try to find an antibiotic that will work for him, which is scary.
Oh and you cannot give any Tylenol until the cultures are drawn so they feel MISERABLE and you can't help.
And you can never give Motrin because it can cause them to bleed out with a central line. I actually had an ER doctor offer it to Braden once...I reminded her that was a bad idea. ;)
She said, "oh that's right...I forgot!"
Whoops!!
(that's certainly terrifying)
Then there's the packing. Not a terrifying reason but a big one to not enjoy fevers. Forget something when you are on the "Brian Is Out Of Town Flow Chart" and you are out of luck because you aren't going to get it for several days.
I used to always keep a suitcase packed and in the back of my car. I haven't had that in my car for a long time BUT I do have one packed and ready to go at all times in the closet because there's no time to throw things into a suitcase when you have to rush to the hospital for those cultures to be drawn.
When Zach was smaller, I used to even have a bag packed for him so the "lucky person" I was able to beg to keep him would be able to grab it for him.
Thankfully, he's old enough that he can now pack his own.
Well...he might forget his clothes and a toothbrush...but he would NEVER forget his i-Pod or Nerf Guns...
gotta get the important stuff first!! ;)
Then there's my backpack.
I always have a backpack filled with toys, books, snacks, IV line dressing covers, a ziploc baggie, and a change of clothes for both of us. I take it with us every place we go no matter what day.
(The change of clothes isn't for overnight...it's in the event of throwing up. So is the baggie. We learn from experience!)
That bag is ready all the time.
There are still two more bags which must come with us. First, Braden's backpack of tigers and blankets...he would cry the entire time without them. And his bag of electronics to entertain him (dvd player and iPad)...
or I would cry the entire time without them. ;)
It's good to have something to occupy the endless hours. Never depend on hospital electronics.
EVER! :)
Another reason to dislike fevers...they ALWAYS happen on a holiday or special event.
Tomorrow is school picture day.
He's been sick for pictures Every.Single.Year....
except for last year. We got lucky last year. The problem is that IF he misses pictures day tomorrow, we have to do retake day which isn't that big of a deal except we learned a long time ago to never expect tomorrow.
I don't know why I need those silly school pictures, but I do. It just makes me mad that cANCER and his cANCER hardware could stop them from happening.
I just want to see his sweet picture in the yearbook, Braden Hofen 3rd Grader.
Could be the last one.
His temp is down to 98.5 right now with no Tylenol having been given...
(told you posting for thoughts and prayers works) so I'm hopeful we can make pictures.
Braden's Army rocks!
TAKE THAT cANCER!
And the biggest reason we fear fevers is because it could mean the cancer is raging again. Fever is your body's way to build up warriors to kill foreign invaders inside the body. His is bumping up because he has a cold...the cold is obvious....
but...
it's the first place your head and heart go with a fever.
What if it's not just the cold?
What if his body is fighting more cancer cells too.
So for now, we wait, monitor the temp, hope it doesn't spike so we can stay on the left side of the "Fever Action Plan Flow Chart" and that he can do pictures tomorrow. No fever since 8:00 am so far.
Because his temp is down, we are sitting on the couch, snuggling with his favorite blankie watching Tom and Jerry while I type.
That's the good thing about fevers, I get to be with my baby all day long.
The BEST thing about fevers...he's still alive to HAVE a fever.
So even though it terrifies me, annoys me, we are blessed to have this stupid fever.
It's a strange thing to be grateful for...and it's crazy to have to be grateful for the smiler pile of crap but I am.
Please keep sending hope the fever stays quiet and we get to stop at the initial box on the flow chart...
Maybe someday....years from now he will have a "normal fever" without cANCER in his life, without a central line...just a missed day of school.
Now THAT would be a VERY happy day!!!
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!
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!
Sunday, September 22, 2013
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!!
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! |
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