Be kind.
Kindness means to be friendly, generous and considerate.
It's pretty simple to understand.
But somehow, it seems so difficult to live...
for some...
not all....
Let me be clear that being kind doesn't mean that you are never going to disagree with someone,
that you will never take issue with them,
that you will always get along with every person you encounter,
and that you will choose to be friends with everyone you meet.
Kindness is about being humble...
and not being a "Bye Felicia" kind of person...
because none of us is all that...
we are ALL works in progress...
and intentionally proclaiming our superiority over others, is certainly not what kindness is about.
Kindness dictates that we understand the concept of humility before anything else.
Kindness is about being selfless....
and giving up your time to listen and appreciate rather than proclaim and judge.
It doesn't mean we are doormats who never stand up for ourselves or others.
We all should make our points and then discuss those points.
We even can agree to disagree on things...
But then we must move forward...
Without resentment.
Kindness is about embracing differences....
and seeking to actually understand those differences...
not just tolerate them.
Kindness is about being unassuming...
while being willing to learn about different points of view...
so we can grow....
because nobody knows everything.
My 11 year old has autism.
Because of his autism, he doesn't understand the concepts of judging people and gossiping. He is literally incapable of gossip and has never said a negative or nasty word about anyone as a result, ever.
He likes everyone, and loves a special few. He approaches every person with love in his heart and a smile on his face, without fail...
Even when he is not met with the same.
He teaches me about kindness through his example and by watching others with him.
His friends are so sweet with him and the level of kindness these children possess and show is absolutely what we should all try to achieve in our lifetimes.
I've watched them sit with him at lunch, when they could sit with "normal" kids.
I've watched one of his friends comfort him and hold his hand to walk him into class because he was scared.
I see his friends stop to hug him or give him high fives every morning when he gets to school, every single day.
I've seen kids leave groups with "normal" peers to seek him out to play because he was alone. They have skipped competitive league games to come to his birthday parties. They have gone out of their way to invite him to watch their sports teams play so he can cheer them on. They know it's a way he can be involved because he will never be able to play on a competitive team.
And I have witnessed his friends come to his defense when others do not act with kindness toward him. That makes me grateful...
and hopeful.
What if we could all learn to be truly kind like these kids?
We could all learn this from these children and start to model their examples of generosity, friendship, and compassion.
What if we all could be
humble,
selfless,
unassuming,
AND KIND...
rather than the opposites.
Because we are all a little bit like the dismissed and belittled "Felicias" of the world...
we are all a little misunderstood...
and we are certainly all works in progress.
What if we all looked at our OWN reflection in the mirror and drilled deep down inside that person to see where our level of responsibility and ownership lies for all of the things we want to judge and criticize others for?
Just be kind.
It's that simple.
Be Kind!
Showing posts with label Deliece Hofen Blog. Show all posts
Showing posts with label Deliece Hofen Blog. Show all posts
Tuesday, February 9, 2016
Tuesday, January 26, 2016
Relapsed Neuroblastoma Survivor...
January 26, 2011 Braden and I were in Philadelphia for scans.
His relapsed neuroblastoma had continued to defy a cure although scans every 3 months had shown that at times it was shrinking a little or at least staying stable.
The chemo he was currently on was wreaking havoc on his system and once again our oncologist in Kansas City was telling me that we needed to abandon this therapy he had been on for 8 months. The oncologist said that it was time to stop because the therapy was just too hard on his body. We were trying to qualify for another therapy but his platelets remained too low and he couldn't so we convinced our KC oncologist to reduce his chemo by 50% and we doubled the time interval between his doses in the hope of continuing the therapy and keeping his cancer at least stable.
We had several times before this that our KC oncologist had told us that we were at the end and we needed to accept our reality. And every time I had argued, advocated and powered through it, but this time I was beginning to wonder if he was right. However, I was able to buy enough time with him to get him to concede to one more round before Braden's scans on January 26.
We knew that the this scan was critical, to be honest, every scan is critical. If scans show that the cancer is stable, that's a win. If scans show that the cancer is getting smaller it's a victory but if it's growing, it's a different game entirely. And it's never a good thing.
Braden was six.
We went in for scans and then headed to clinic to see Dr. Mosse. She is our oncologist in Philadelphia.
We were experiencing "CHOP time" and had about an hour delay in trying to get in to get the results from scans. To top it off, the first person we saw in the waiting room was Dr. Mosse who came out to tell us hello. That never happens! She is always in the back and we don't see her until result time. She commented that he looked great which helped me a little bit. Surely, she would not have said that if things were worse.
We were eventually called back to the examination room and Dr. Mosse was with the fellow who was working with her. She smiled and said, "I'm just thrilled to be able to tell you that Braden's MIBG scan is completely normal".
I just sat there and all I could eek out was, "I'm going to need for you to say that again." She did and then the tears started.
For his cancer that had not been cured in 18 months of the therapies post relapse to suddenly be cured with half the dose and double the time interval between his latest chemo cocktail (that he had been on for 8 months) to suddenly get it was remarkable.
Our conversation didn't end with advice to go home and enjoy our victory, instead I pressed for us to try to get antibody therapy for Braden now. I wanted to make sure we cleaned up any left over cells. I firmly believe that we need to treat neuroblastoma like a chronic disease because the cure rate is so low. We think we have it beat, but we don't so follow up therapies are critical when you have it "down".
We were trying to get it for Braden enrolled in antibody therapy when we found the relapse which meant he couldn't receive it. However, because he was in cue, we were able to get a unique exception for him to receive it. At that time, it was not standard care for all children with neuroblastoma as it is currently. It is a therapy that can go in and clean up leftover cells that scans cannot see and I wanted it, badly. Dr. Mosse made calls to the NIH and gained us the exception and we would start it a few weeks later.
When Braden's neuroblastoma relapsed there was no known cure. Five years later, there is still no known cure and less than a 10% chance for five year survival.
Somehow, we have been blessed with those five years and today we can say Braden is a neuroblastoma survivor. He still has 3 years left to go before he is a secondary leukemia survivor but we are going to celebrate today.
We left the hospital and headed to the airport in Philly, but it had been snowing and the forecast called for a major storm. Because of that, I had kept our hotel room in the event we didn't get out that night. 90% of the time, we don't get home the same day we think we will when we travel to and from Philly...it's always something and the forecast was enough for me to think we were probably not going to make it out that night.
The airport ended up closing about 30 minutes before our flight was scheduled to depart because of thundersnow. The unhappy travelers were most certainly just that, unhappy. But we kept smiling. Someone commented about how we sure seemed happy with the bad news and I, rather loudly, explained why and that no travel plan changes could change our happy faces that night. I heard far less grumbling after that, at least no grumbling close to us.
We were lucky enough to be on the last shuttle that left the airport to the hotel where we watched the most beautiful snowstorm. Snow is one of Braden's most favorite things in the world and I'm still pretty sure that it was no coincidence that we got nearly two feet that same day.
We have been blessed and lucky. No other child has traveled the therapy journey that Braden has traveled, he is completely unique. I still don't know how or why and there is a great deal of guilt that comes from being able to kiss my son every day when so many mommies cannot.
Thank you all for keeping us in your thoughts and prayers along this journey. We still have bridges to cross and miles to travel and we will keep doing that, one step at a time.
With HOPE!
TAKE THAT cANCER!
Sunday, August 9, 2015
Never Ever Give Up...
One thing we've learned since our daughter, Miranda, died is to never give up even when things seem impossible to get through.
August 1st was Miranda Day, the day she was born and the day she earned her angel wings.
She would have been 14.
The lesson to never give up hope, to never give up fighting, and to believe in miracles regardless of how bad things get has been tested repeatedly since 2001.
I also learned that God is ALWAYS good. Always. Even when we don't get the answer we wanted when we pray.
I prayed for Miranda to live, but she died.
And God answered my prayers by loving me through it and showing me that I can be strong and that He is there for me if I just allow him to be. I think he grieves with us and is there to love us through the hard times.
I do not believe the "bad stuff" comes from Him. Bad stuff isn't a test from God; it's just bad stuff. God doesn't give people cancer to test their faith or to punish their parents.
It's. Just. Bad. Stuff and you have to get through it, either in one piece or in several.
Because of my faith, I have learned that persevering through the tough things is possible even when it seems impossible. I choose to remain in one piece.
It's not always enjoyable...and certainly the circumstances that we need to persevere through are not desirable...
but the way to win over those tough things (like cancer) is to refuse to allow it them to win.
I'm stubborn.
Launching a passive aggressive offense comes naturally for me.
SO....now that our lives have been more....I suppose one could call it "normal"....with the recent lack of cancer treatments (TAKE THAT cANCER!) I'm trying to reclaim my life and #TakeItBack.
SOO....I decided to do something really not so smart, illogical, and pretty much absurd...
and I signed up for a half marathon.
The why is simple. I have Multiple Sclerosis, I am a cancer survivor, I've been a "momcologist" for almost 8 years, and I spend my days fighting for childhood cancer research and awareness. Oh and I don't run.
Seriously....8 months ago, I couldn't even walk down the stairs without gripping the stair rails and moving to the next step one foot at a time while squinting in pain.
So maybe it's not that simple...
but it IS passive aggressive and totally stubborn.
I wanted to do something that would be really hard and seemed impossible...and this sure fits that bill.
SO to keep myself accountable, I posted on Facebook that I was going to do a half marathon. There was no way to back out after I posted...I mean it's Facebook...people only post things that are 100% true on there.
Notice I didn't say I was going to "run" a half marathon, I am going to finish one but my gait has been termed "r/alking" by one of my dear friends, Stacy. Mostly walking mixed with a little running.
I'm so gonna r/alk that half! ;)
Two of my friends, Cari and Shelley, made a t-shirt for me that I will wear the day of the marathon. The front is an image of my biggest reasons to #TakeItBack...Miranda, Braden, and Zach...my three babies.
Okay, please don't tell Zach I said baby because he's a seventh grader and that would result in much grumbling and grouching.... And I don't have time for that...for the 100th time today.
Sigh!
The back was inspired by a t-shirt my friends and I had a few years ago for an event we called "Trail of Beers". It had like 20 bars listed on it and there was a checkbox beside each bar. The goal was to get each bar checked off in one day.
And you had to drink a beer at each stop...
except for the DD....
and I was the DD (smart me)...you automatically got a checkmark just by getting your passengers there.
This time, there are no bars listed officially on my shirt...
(although I'm fairly certain there will be one soon after the finish line)
The final box gets checked off after I cross that finish line.
R/alking or crawling....
Every day I write the name of a childhood cancer hero or angel hero on the bottom of the back of my shirt and I think about that hero while I am running..
When I feel like it's getting hard and like I don't want to keep running, I think about that hero and all that child has gone through.
The keyword there is "Child". These are kids who should be focused on swinging and running and playing, not fighting cancer.
And I push through my pain because it doesn't even begin to compare to theirs.
I'm not very fast...and I'm certainly not always graceful...
Yesterday was the perfect example of how "not" graceful I was. It was storming that morning so I went to the gym to r/alk my 3.5 miles on the indoor track.
About mid-way through mile 2, I felt myself begin to fall.
The last time I fell, I broke my arm....so I was eager to avoid that.
Instead I threw myself into a baseball type slide on my hip. Jarod Dyson would have been proud!
I was safe and I got right back up and started running again. Unfortunately, the "slide" occurred right behind the television sets in the gym...which is where every single person doing cardio is looking.
I was totally on center stage! Awesome!!
I recovered and was doing well when somewhere in mid-mile 3, I felt myself begin to fall again but this time my weight was shifted all the way forward resulting in a less graceful fall looking more like this:
Except this guy looks better than I did.
I got right back up and started running again, but I was cracking up. And it was right in front of the free weights section of the gym (I call it Muscle Beach). It's the most testerone ridden corner of the gym filled with buff people doing buff people things and I totally wiped out flat on my face right in front of the buff people!
I am physically unharmed, but I did put a hole in the knee of my favorite capri workout pants so I'm a little messed up emotionally about that.
It's my MS...I have a terrible sense of balance on a normal day as a result of my MS and heat is one of my triggers. We are having really hot weather in Kansas right now. What? Hot weather in Kansas in August?? ;)
I just need to think about my feet and my balance more when I'm running...
rather than jamming to Disturbed.
My half marathon journey is likely to be more falling than flying but I'm going to keep going and Never Ever Give Up!
I'm taking my life back...even if it does result in falling.
I'm going to keep getting back up. All three of my children are fighters and the names of the heroes I write on my shirt are fighters. They inspire me.
My goal is to honor them and raise awareness through this journey. It is NOT a fundraising effort, it's just about fighting like these kids.
Some of my amazing friends put together a video about why I'm running. A huge thank you to some amazing guys for this beautiful video. We will keep making some clips so you can hear all about our kids.
Special thanks to Tug McTighe, Jon Hardesty, and Matt Loehrer at Callahan Creek and Brandon Green at Evergreen Images for the video!
I hope you like it!!
The YouTube link is: https://www.youtube.com/watch?v=P4wsVeKl9qo
Today my training schedule says that I can either run or cross train.
I think I'll pick cross training and save my second favorite capri workout pants from certain disaster!
One thing I know is that I'm not going to quit....
No matter how many pairs of capris I have to buy! :)
TAKE THAT cANCER!
August 1st was Miranda Day, the day she was born and the day she earned her angel wings.
She would have been 14.
The lesson to never give up hope, to never give up fighting, and to believe in miracles regardless of how bad things get has been tested repeatedly since 2001.
I also learned that God is ALWAYS good. Always. Even when we don't get the answer we wanted when we pray.
I prayed for Miranda to live, but she died.
And God answered my prayers by loving me through it and showing me that I can be strong and that He is there for me if I just allow him to be. I think he grieves with us and is there to love us through the hard times.
I do not believe the "bad stuff" comes from Him. Bad stuff isn't a test from God; it's just bad stuff. God doesn't give people cancer to test their faith or to punish their parents.
It's. Just. Bad. Stuff and you have to get through it, either in one piece or in several.
Because of my faith, I have learned that persevering through the tough things is possible even when it seems impossible. I choose to remain in one piece.
It's not always enjoyable...and certainly the circumstances that we need to persevere through are not desirable...
but the way to win over those tough things (like cancer) is to refuse to allow it them to win.
I'm stubborn.
Launching a passive aggressive offense comes naturally for me.
SO....now that our lives have been more....I suppose one could call it "normal"....with the recent lack of cancer treatments (TAKE THAT cANCER!) I'm trying to reclaim my life and #TakeItBack.
SOO....I decided to do something really not so smart, illogical, and pretty much absurd...
and I signed up for a half marathon.
The why is simple. I have Multiple Sclerosis, I am a cancer survivor, I've been a "momcologist" for almost 8 years, and I spend my days fighting for childhood cancer research and awareness. Oh and I don't run.
Seriously....8 months ago, I couldn't even walk down the stairs without gripping the stair rails and moving to the next step one foot at a time while squinting in pain.
So maybe it's not that simple...
but it IS passive aggressive and totally stubborn.
I wanted to do something that would be really hard and seemed impossible...and this sure fits that bill.
SO to keep myself accountable, I posted on Facebook that I was going to do a half marathon. There was no way to back out after I posted...I mean it's Facebook...people only post things that are 100% true on there.
Notice I didn't say I was going to "run" a half marathon, I am going to finish one but my gait has been termed "r/alking" by one of my dear friends, Stacy. Mostly walking mixed with a little running.
I'm so gonna r/alk that half! ;)
Two of my friends, Cari and Shelley, made a t-shirt for me that I will wear the day of the marathon. The front is an image of my biggest reasons to #TakeItBack...Miranda, Braden, and Zach...my three babies.
Okay, please don't tell Zach I said baby because he's a seventh grader and that would result in much grumbling and grouching.... And I don't have time for that...for the 100th time today.
Sigh!
The back was inspired by a t-shirt my friends and I had a few years ago for an event we called "Trail of Beers". It had like 20 bars listed on it and there was a checkbox beside each bar. The goal was to get each bar checked off in one day.
And you had to drink a beer at each stop...
except for the DD....
and I was the DD (smart me)...you automatically got a checkmark just by getting your passengers there.
This time, there are no bars listed officially on my shirt...
(although I'm fairly certain there will be one soon after the finish line)
The final box gets checked off after I cross that finish line.
R/alking or crawling....
Every day I write the name of a childhood cancer hero or angel hero on the bottom of the back of my shirt and I think about that hero while I am running..
When I feel like it's getting hard and like I don't want to keep running, I think about that hero and all that child has gone through.
The keyword there is "Child". These are kids who should be focused on swinging and running and playing, not fighting cancer.
And I push through my pain because it doesn't even begin to compare to theirs.
I'm not very fast...and I'm certainly not always graceful...
Yesterday was the perfect example of how "not" graceful I was. It was storming that morning so I went to the gym to r/alk my 3.5 miles on the indoor track.
About mid-way through mile 2, I felt myself begin to fall.
The last time I fell, I broke my arm....so I was eager to avoid that.
Instead I threw myself into a baseball type slide on my hip. Jarod Dyson would have been proud!
I was safe and I got right back up and started running again. Unfortunately, the "slide" occurred right behind the television sets in the gym...which is where every single person doing cardio is looking.
I was totally on center stage! Awesome!!
I recovered and was doing well when somewhere in mid-mile 3, I felt myself begin to fall again but this time my weight was shifted all the way forward resulting in a less graceful fall looking more like this:
Except this guy looks better than I did.
I got right back up and started running again, but I was cracking up. And it was right in front of the free weights section of the gym (I call it Muscle Beach). It's the most testerone ridden corner of the gym filled with buff people doing buff people things and I totally wiped out flat on my face right in front of the buff people!
Like.A.Boss
I am physically unharmed, but I did put a hole in the knee of my favorite capri workout pants so I'm a little messed up emotionally about that.
It's my MS...I have a terrible sense of balance on a normal day as a result of my MS and heat is one of my triggers. We are having really hot weather in Kansas right now. What? Hot weather in Kansas in August?? ;)
I just need to think about my feet and my balance more when I'm running...
rather than jamming to Disturbed.
My half marathon journey is likely to be more falling than flying but I'm going to keep going and Never Ever Give Up!
I'm taking my life back...even if it does result in falling.
I'm going to keep getting back up. All three of my children are fighters and the names of the heroes I write on my shirt are fighters. They inspire me.
My goal is to honor them and raise awareness through this journey. It is NOT a fundraising effort, it's just about fighting like these kids.
Some of my amazing friends put together a video about why I'm running. A huge thank you to some amazing guys for this beautiful video. We will keep making some clips so you can hear all about our kids.
Special thanks to Tug McTighe, Jon Hardesty, and Matt Loehrer at Callahan Creek and Brandon Green at Evergreen Images for the video!
I hope you like it!!
The YouTube link is: https://www.youtube.com/watch?v=P4wsVeKl9qo
Today my training schedule says that I can either run or cross train.
I think I'll pick cross training and save my second favorite capri workout pants from certain disaster!
One thing I know is that I'm not going to quit....
No matter how many pairs of capris I have to buy! :)
TAKE THAT cANCER!
Wednesday, July 15, 2015
#TakingItBack2015
I've been quiet for a bit and haven't blogged.
To be honest, I've been trying to figure my life out.
For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.
We know we are never out of the woods, we know that both of our teams in KC and Philly have never seen a child with secondary MDS post relapsed neuroblastoma survive for 5 years, but as of right now... for today...
Braden is in remission from both cancers....
all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.
My life has been completely consumed by fighting cancer since December 28, 2007.
I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.
No one should ever hear the words, "No Known Cure".
Period.
And for the first time in nearly 8 years, we are not in active treatment.
Seriously.
He's been actively fighting cancer for that long.
And now I find myself at a bit of a loss; trying to figure out what our new normal is and how I can trust it might stay this way for a bit.
Since Braden's initial diagnosis, I have felt like Wile E. Coyote, waiting for the anvil to drop yet again and our world to once more be destroyed. It happened so many times that eventually you actually do begin to act like that crazy coyote and you just hold up a sign that says, "Not Again" while you fall into the canyon of the next crapfest.
Braden's Hope For Childhood Cancer, our non profit, has been my sanity. Through it my friends and I have been able to help hundreds of children and bring hope to them through research and awareness.
It has kept me positive and given me a purpose and made me feel like even if we didn't beat Braden's cancer, we might be able to beat it for another family.
And there is a great deal of peace in that.
But now that things have "normalized" a bit at home, I find myself wanting a life for me again. Before all of this crapfest, I had a life. I had a career that I loved very much. I actually didn't realize how much of my own self identity and self worth was wrapped up into my career, but it was.
And once that was gone, I had a hole and an emptiness. I didn't leave it voluntarily, it was ripped from me by cANCER.
I miss it. And I loathe cANCER for taking it from me.
Yet at the same time, I am very fulfilled in my role as mom and President of Braden's Hope. However, I yearn for my own self identity. I know, that sounds contradictory and a little crazy; I'm not explaining it very well...
I want back what cANCER stole from me. I want my life back.
Now that Braden is one year post transplant, and the vast majority of relapses occur in the first 12 months, I have my sea legs back again. I'm scared to stand on them because they always seem to get cut off when I try, but I'm going to take my mom's advice from when I was a little girl and was showing quarter horses.
"If you get bucked off, you get right back up and on that saddle and show your horse that you are in control and you are not afraid, even if you are. If he knows you are scared, he will always be in control and he will just keep bucking you off..."
Well I am afraid. I'm terrified to try to take my life back and rebuild it from scratch because the anvil always seems to fall again and it's absolutely devastating when you just climb out of the sludge only to be kicked back into it.
But I am going to get back up on the saddle again.
On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!
So now, I'm taking my life back and cANCER doesn't get to be in control any longer. It has taken quite enough from me and I am over it.
Momma is back, with new hope and I am now including the word, "future" in my vocabulary. That's a pretty big deal and something I never thought I would do again in my lifetime.
So stay tuned for all of continued #TakeThatcANCER moments and new #TakingItBack2015 moments.
Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;)
We are taking it back and cANCER is now powerless.
TAKE THAT cANCER!!
To be honest, I've been trying to figure my life out.
For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.
We know we are never out of the woods, we know that both of our teams in KC and Philly have never seen a child with secondary MDS post relapsed neuroblastoma survive for 5 years, but as of right now... for today...
Braden is in remission from both cancers....
all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.
My life has been completely consumed by fighting cancer since December 28, 2007.
I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.
No one should ever hear the words, "No Known Cure".
Period.
And for the first time in nearly 8 years, we are not in active treatment.
Seriously.
He's been actively fighting cancer for that long.
And now I find myself at a bit of a loss; trying to figure out what our new normal is and how I can trust it might stay this way for a bit.
Since Braden's initial diagnosis, I have felt like Wile E. Coyote, waiting for the anvil to drop yet again and our world to once more be destroyed. It happened so many times that eventually you actually do begin to act like that crazy coyote and you just hold up a sign that says, "Not Again" while you fall into the canyon of the next crapfest.
Braden's Hope For Childhood Cancer, our non profit, has been my sanity. Through it my friends and I have been able to help hundreds of children and bring hope to them through research and awareness.
It has kept me positive and given me a purpose and made me feel like even if we didn't beat Braden's cancer, we might be able to beat it for another family.
And there is a great deal of peace in that.
But now that things have "normalized" a bit at home, I find myself wanting a life for me again. Before all of this crapfest, I had a life. I had a career that I loved very much. I actually didn't realize how much of my own self identity and self worth was wrapped up into my career, but it was.
And once that was gone, I had a hole and an emptiness. I didn't leave it voluntarily, it was ripped from me by cANCER.
I miss it. And I loathe cANCER for taking it from me.
Yet at the same time, I am very fulfilled in my role as mom and President of Braden's Hope. However, I yearn for my own self identity. I know, that sounds contradictory and a little crazy; I'm not explaining it very well...
I want back what cANCER stole from me. I want my life back.
Now that Braden is one year post transplant, and the vast majority of relapses occur in the first 12 months, I have my sea legs back again. I'm scared to stand on them because they always seem to get cut off when I try, but I'm going to take my mom's advice from when I was a little girl and was showing quarter horses.
"If you get bucked off, you get right back up and on that saddle and show your horse that you are in control and you are not afraid, even if you are. If he knows you are scared, he will always be in control and he will just keep bucking you off..."
Well I am afraid. I'm terrified to try to take my life back and rebuild it from scratch because the anvil always seems to fall again and it's absolutely devastating when you just climb out of the sludge only to be kicked back into it.
But I am going to get back up on the saddle again.
On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!
So now, I'm taking my life back and cANCER doesn't get to be in control any longer. It has taken quite enough from me and I am over it.
Momma is back, with new hope and I am now including the word, "future" in my vocabulary. That's a pretty big deal and something I never thought I would do again in my lifetime.
So stay tuned for all of continued #TakeThatcANCER moments and new #TakingItBack2015 moments.
Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;)
We are taking it back and cANCER is now powerless.
TAKE THAT cANCER!!
Wednesday, March 18, 2015
Last Year's Plane Ride...
One year ago today, Braden then 9, Zach then 10, and me then 39+ boarded a plane to Philadelphia so Braden could have a bone marrow transplant for his secondary treatment-induced leukemia. His only hope of surviving was for Zach's bone marrow to be transplanted into his after we killed off his own bone marrow with high dose chemotherapy.
Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.
Well..cancerS had to stay quiet.
The concern was that Braden's initial cancer, neuroblastoma, would come back once we knocked out Braden's own immune system. He had relapsed with that cancer when he was five and there is no known cure for relapsed neuroblastoma. We did some "crazy" treatments, a phase one study in which he was one of only three children in the world who got it, and various other treatments to teach his own immune system to recognize any neuroblastoma cells and keep them dormant or kill them.
So once we knocked out his own immune system, Zach's cells would not have that same immunity and any dormant neuroblastoma cells would come back. And he would die.
But if we didn't do the transplant, he would die from the secondary leukemia.
Choosing a treatment path was very much like choosing how we wanted Braden to die.
So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.
Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.
Never.
That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.
I did what mother's do, I tried to figure out things that I could do to make this transplant as comfortable for Braden as possible.
So I shipped all of Braden's favorite toys and comfort items to The Children's Hospital of Philadelphia and packed clothes for two and a half months and two seasons. With his autism, it was important that we had as many familiar things for Braden as possible. I packed up his BatMan headquarters, his "guys" which are a mismatch of small plastic figures of Star Wars Characters, Avengers Figures, and Power Rangers guys, his favorite blankets to snuggle in, anything that would make the hospital feel more like home but could be washed every day or wiped down to sani-wipes to keep them germ and dust free while he had no immunity.
I am a planner, a strategic packer and I bring everything including the kitchen sink (well....not really but I always have plenty of wipes, so sort of). I had two suitcases filled to 49.999 pounds of imporatn stuff, and a shopping list of items to get once we arrived in Philly.
And we had Braden's three stuffed tigers. Braden goes everyplace with his three stuffed tigers, they are family. They sleep with him, they ride with him in the car, they always go to the hospital, they ride in the plane, they go everywhere with him because they are his heart.
We got up the morning of March 18, 2014 and traveled to the airport. We boarded, took off and flew to Atlanta, which is clearly in a direct path between Kansas City and Philadelphia. ??
Both boys were excited about flying, Braden because he loves when the airplane bounces in the air so he can hold his hands up in the air and yell, "WHEE, THIS IS FUN!" as if he's on a roller coaster. Zach was excited because he was going to get a soda, which is normally not something I allow him to have at home. He feels like a total rebel when he gets one.
Then the next leg from Atlanta to Philadelphia...
We landed in Philly and heard Braden's familiar, "YAY AIRPWANE, Good job airpwane!" each while he clapped loudly and everyone near us giggled. It happens every time we land. (it is pretty cute)
What I remember isn't so much that he said it again, but that I felt warm tears running down my cheeks when he said it. I don't cry...it just don't, but there were those dang tears running down my cheeks at that moment. Why in the world were they there? We had 6 days of testing before he was even going to be admitted into the hospital...it wasn't time to cry yet, we were just landing. Crying now made no sense.
I hadn't scheduled tears on my agenda for today and I had to get two boys off the plane...why were these stupid tears coming now? I was angry because I don't cry, especially in public but I couldn't stop them from flowing even though I was trying frantically to end this public show of emotion.
I sat in the seat, packing his tigers in his backpack and making sure we didn't leave anything behind on the plane while the tears continued to roll down my face telling myself to stop it right now,
when it hit me.
I wasn't sure I would ever hear him say that adorable phrase ever again.
I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.
We walked out of our house that morning for what could be the last time he would ever be home, We said goodbye to our cat, Indy, and our fish, Darlin'...
We left everyone we loved in KC, all of our friends, and neighbors, Braden's best friends, who are his heart and soul, for what might be the last time we would ever see them...
everything we did that day was a potential last because it was quite possible that he was not coming back to Kansas City with us.
Over the past seven years of continual treatment, there have been more times than I can count that I have been terrified that we were at the end.
March 18, 2014 was another of those times.
It was so much more than a flight to Philly, with a stop in Atlanta.
It was the beginning of what we hoped would be a...
well, what we hoped would be a beginning.
And thankfully, it was.
Yesterday, Braden and Zach and I went on a four mile hike for two hours and I was the only one who was tired and ready to leave. Braden begged to stay and "go again?"
I have no idea what we will do today in celebration of Braden being here one year later. The odds were very much against him still being here today.
The beauty of today is that we can do whatever we want to do today...
we can do whatever the four of us want to do today, the possibilities are endless because we have been blessed and fortunate enough to have had another year with Braden.
Don't take the ability to make choices about what to do with your family each day for granted.
Every day is a gift and begin able to simply choose to do something as mundane as going to the store with my kids is...
remarkable.
TAKE THAT cANCER!
Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.
Well..cancerS had to stay quiet.
The concern was that Braden's initial cancer, neuroblastoma, would come back once we knocked out Braden's own immune system. He had relapsed with that cancer when he was five and there is no known cure for relapsed neuroblastoma. We did some "crazy" treatments, a phase one study in which he was one of only three children in the world who got it, and various other treatments to teach his own immune system to recognize any neuroblastoma cells and keep them dormant or kill them.
So once we knocked out his own immune system, Zach's cells would not have that same immunity and any dormant neuroblastoma cells would come back. And he would die.
But if we didn't do the transplant, he would die from the secondary leukemia.
Choosing a treatment path was very much like choosing how we wanted Braden to die.
So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.
Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.
Never.
That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.
I did what mother's do, I tried to figure out things that I could do to make this transplant as comfortable for Braden as possible.
So I shipped all of Braden's favorite toys and comfort items to The Children's Hospital of Philadelphia and packed clothes for two and a half months and two seasons. With his autism, it was important that we had as many familiar things for Braden as possible. I packed up his BatMan headquarters, his "guys" which are a mismatch of small plastic figures of Star Wars Characters, Avengers Figures, and Power Rangers guys, his favorite blankets to snuggle in, anything that would make the hospital feel more like home but could be washed every day or wiped down to sani-wipes to keep them germ and dust free while he had no immunity.
I am a planner, a strategic packer and I bring everything including the kitchen sink (well....not really but I always have plenty of wipes, so sort of). I had two suitcases filled to 49.999 pounds of imporatn stuff, and a shopping list of items to get once we arrived in Philly.
And we had Braden's three stuffed tigers. Braden goes everyplace with his three stuffed tigers, they are family. They sleep with him, they ride with him in the car, they always go to the hospital, they ride in the plane, they go everywhere with him because they are his heart.
We got up the morning of March 18, 2014 and traveled to the airport. We boarded, took off and flew to Atlanta, which is clearly in a direct path between Kansas City and Philadelphia. ??
Both boys were excited about flying, Braden because he loves when the airplane bounces in the air so he can hold his hands up in the air and yell, "WHEE, THIS IS FUN!" as if he's on a roller coaster. Zach was excited because he was going to get a soda, which is normally not something I allow him to have at home. He feels like a total rebel when he gets one.
Then the next leg from Atlanta to Philadelphia...
We landed in Philly and heard Braden's familiar, "YAY AIRPWANE, Good job airpwane!" each while he clapped loudly and everyone near us giggled. It happens every time we land. (it is pretty cute)
What I remember isn't so much that he said it again, but that I felt warm tears running down my cheeks when he said it. I don't cry...it just don't, but there were those dang tears running down my cheeks at that moment. Why in the world were they there? We had 6 days of testing before he was even going to be admitted into the hospital...it wasn't time to cry yet, we were just landing. Crying now made no sense.
I hadn't scheduled tears on my agenda for today and I had to get two boys off the plane...why were these stupid tears coming now? I was angry because I don't cry, especially in public but I couldn't stop them from flowing even though I was trying frantically to end this public show of emotion.
I sat in the seat, packing his tigers in his backpack and making sure we didn't leave anything behind on the plane while the tears continued to roll down my face telling myself to stop it right now,
when it hit me.
I wasn't sure I would ever hear him say that adorable phrase ever again.
I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.
We walked out of our house that morning for what could be the last time he would ever be home, We said goodbye to our cat, Indy, and our fish, Darlin'...
We left everyone we loved in KC, all of our friends, and neighbors, Braden's best friends, who are his heart and soul, for what might be the last time we would ever see them...
everything we did that day was a potential last because it was quite possible that he was not coming back to Kansas City with us.
Over the past seven years of continual treatment, there have been more times than I can count that I have been terrified that we were at the end.
March 18, 2014 was another of those times.
It was so much more than a flight to Philly, with a stop in Atlanta.
It was the beginning of what we hoped would be a...
well, what we hoped would be a beginning.
And thankfully, it was.
Yesterday, Braden and Zach and I went on a four mile hike for two hours and I was the only one who was tired and ready to leave. Braden begged to stay and "go again?"
I have no idea what we will do today in celebration of Braden being here one year later. The odds were very much against him still being here today.
The beauty of today is that we can do whatever we want to do today...
we can do whatever the four of us want to do today, the possibilities are endless because we have been blessed and fortunate enough to have had another year with Braden.
Don't take the ability to make choices about what to do with your family each day for granted.
Every day is a gift and begin able to simply choose to do something as mundane as going to the store with my kids is...
remarkable.
TAKE THAT cANCER!
Sunday, December 28, 2014
Future...
7 years ago on December 28, we stopped using the word "future".
We were told that Braden had a 30% chance of surviving his neuroblastoma diagnosis for 5 years.
Then a year and a half later, we were told there was no known cure for his relapse.
Then 17 months ago, we were told by both of our cancer teams in KC and Philly that they had never seen a child survive the particular type of secondary leukemia Braden has following a neuroblastoma diagnosis.
Future hasn't been word I have chosen to use since December 28, 2007.
It seemed a bit irrelevant...
and a whole lot sad.
While the word future isn't my favorite word, and the word past is
well,
emotionally conflicting...
because it's been a really rough 7 years, but he's still here.
So what do you do with equally intense amounts of gratitude and anger?
Quite a quandry.
But, every year on Braden's cancerversary, I am reminded of the grace of God and the tremendous blessing He gave us by trusting us with this very special little boy who would bring so much joy and clarity to our lives.
7 years ago everything familiar to our family was wiped out with one x-ray showing a large gray mass.
Braden was oblivious to why his world had been completely changed in every way you could imagine.
His autism requires constants, routines, and predictability.
He had none of that.
He didn't understand why everything in his life was scrambled because he doesn't even know he has cancer.
He has no concept that this isn't the way we all live.
He didn't know why people were constantly sticking him with needles and tubes,
He didn't understand why he was hooked up to machines almost 24/7 for over a year.
Why he couldn't see his friends, why he didn't live at home very many days, why he did live at the hospital,
yet he was still smiling,
and enjoying life,
while fighting to have a future.
He asks no questions about why people are stabbing him with needles, injecting him with poison, holding him down for meds.
He harbors no resentment...
anger...
fear...
doubt...
worry...
or hopelessness.
He's never wavered in his constant example of positivity,
perspective,
love,
and an immense appreciation for every single breath.
There's a life lesson there.
A life lesson I could benefit from,
a life lesson many of us could benefit from.
All thanks to cANCER.
cANCER who thought it was getting the best of this brave knight.
We would trade every lesson for him to not have to endure all he has gone through in his short lifetime.
Sadly, it doesn't work that way.
So the best we can do is to try to live with the same happiness, appreciation, love, fight, courage,
and HOPE that Braden lives with every single minute of his life.
Anything else does nothing to honor his seven year long victory.
As of today, he's winning and cANCER is losing.
But, as we were just reminded when we went back for scans in Philly a few weeks ago,
it could all change at any moment.
It feels like we are walking over a bridge suspended by a rope that is unraveling.
And there's Braden, crossing that bridge with his smiling face,
and the beautiful naivety that accompanies being oblivious to the unraveling rope.
Instead of worrying about the rope and its impending doom, he's happy just because he's still on the bridge.
He's focused on putting one foot in front of the other, while being joyous just to be traversing the bridge, no matter how wobbly it is or where it is headed.
I want to live like Braden.
I want to be that faithful, trusting, and grateful.
I'm a work in progress.
What I do know is that my faith in a God who didn't give this cancer to Braden and who will carry us through wherever the bridge leads us to in the future,
is enough.
And that's all the "future" I care to consider right now.
Braden has taught me that HOPE is the key.
HOPE is the optimism and the light.
HOPE shouts "TAKE THAT cANCER".
7 years and he's STILL here!
"They" thought they knew where the bridge was leading to, and when he would reach his final destination.
"They" were wrong.
And we keep believing and understanding that while the future is unknown and uncertain, we have today.
And today is going to be as beautiful and wonderful as we make it, regardless how shaky that bridge is on any given day.
We live for today, tomorrow isn't promised.
We live with HOPE!
Deliece
Tuesday, November 25, 2014
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.
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.
Tuesday, November 18, 2014
It IS a sport...
I'm not an athletic girl.
I duck when a ball is thrown in my direction, even if it is thrown gently,
and I can't reciprocate the throwing of a ball in anyone else's direction with any sort of accuracy...
whether it is the broad side or narrow side of the barn, so to speak.
My balance is awful because of my MS so I fall frequently, once I fell and broke my arm...
while walking....
Just.Walking.
Well in all honesty, I was chewing gum at the same time.
So it was a pretty big surprise when I decided to join a gym.
BWAHHAHHAAAHHAAAAA!!
Me...and a gym???
I'm just the girl who ought to join a gym...
so I can hang out with all the athletic people and their ripped physiques...
because my physique is sooo ripped...
not!
I'm more of a hail damage thigh and arm flab flappin' kinda girl.
You know what arm flab is right?
In the event you have been spared this particular gift, it's the flab that hangs from the back of your arm and flaps when dangled as you raise your arms...
Actually, if you are standing behind me on a windy day, there's a good chance you are going to look like my East Coast buddy here from my arm flab smacking you in the face...
I'm just not into sports and athletics...
However,
I do like to walk.
But,
you say,
walking isn't a sport.
Walking is just a "leisure activity".
Not the way I do it.
I am the most competitive person on the entire planet.
That is actually not a good thing because I take it way too far.
Like my first day at the gym...
I joined because they had an indoor track and in the cold weather of winter, I would have to walk on my treadmill day after day after day,
and I do not enjoy walking on a treadmill, repetitively stepping a few inches on a conveyor belt gets a bit boring after a few weeks,
and it makes me feel like George...
or Astro.
Ruh roh!
At least an indoor track gives me a chance to move in a tight circle...
(yup, nothing repetitive and boring about that)
Now I did mention that I'm the most competitive person on the planet and I believe that adding in an element of competition is the key to changing an "activity" into a "sport".
That's how walking is a sport...let me explain...
I strap on my heart monitor....cue up my app to track my speed and distance...put knee braces on both legs (did I mention I'm older than dirt?), and I connect my blu-tooth headphones to my i-phone, crank up my tunes...
(we should pause at tunes because that is an incredibly important part of the motivation/inspiration for walking in a "sport-like" manner. One must have an eclectic mix of Usher, Katy Perry, Godsmack, Metallica, Rob Zombie, Ariana Grande, Maroon 5....gotta mix it up and keep it fresh...for proper motivation/inspiration purposes.)
Each time I walk, my goal is to beat my personal best time...11:45 minute mile with no running, only walking.
My heart rate his locked in for a fat burning target, I'm swinging my arms like a crazy person (duck if you are near me due to the arm flap thing) and I am hauling bootie as I walk.
Literally (and sadly). Hauling. My Bootie....
I have one personal goal...
to pass every single person I meet....
especially runners.
Okay...
slowwwwww runners.
Shoot, once I even passed a person riding a bike while I was at the park.
Sure, she had piggy tails and training wheels but I totally smoked her! ;)
My first day at the gym, I encountered a very fit woman, about my age, running. She was obviously a really experienced runner (as was identifiable by her tippy toe running and slim/trim/fit/looking great in spandex legs).
I actively disliked her from the moment I spied how awesome she looked in that spandex. LOL!
She had that "prancy" zip to her step, she was a strong runner, and she made it look easy...
I set my competitive eyes on my her...
Target Aquired...
Lock on...
ENGAGE!
And I hauled my hail dents and flabby flappies...
and cranked up Usher...
and in a few laps I was right next to her.
The instant I stepped two steps in front of her, she picked it up and zipped out in front of me.
WHAT?????
Being the competitive person that I am, my response (inside my head) was..
"Oh....so you wanna play sister, well game ON!!"
And I kicked it in again...and caught her...
again.
BOOM!!
I'm pretty sure I was actually smiling when I passed her the second time.
And then...
she did it again!!
She kicked it into gear and took off to pass me back.
Are you kidding me???
And this time she ran out much further to increase the distance between us.
I considered not chasing her down for a third time.
I rejected that consideration.
My heart rate was now 184.
I was seeing spots due to the lack of oxygen in my body.
My clothes were soaked from the sweat and I'm pretty sure they could hear my breathing in the next city.
I cared not.
I did the only thing one can do when faced with this type of sports-related situation.
I broke out VanHalen's Right Now.
Bish is goin' down.
And I kicked it in again....
and I caught her again...
and she did it again.
For real???
So I literally stopped, put my hands on my hail dented thighs and loudly laughed and yelled, "you go girl".
She pretended not to hear me...pssshhhhhh...
She didn't have headphones on.
I began walking with my arms above my head to cool off...
literally and figuratively...
She pranced past me again as I was cooling down and it took every ounce of self control I had to not talk trash about how she may have actually passed me...
but technically a "walker" had passed her not once,
not twice,
but THREE times that day.
So I repeat...
Walking is not a leisure activity...
it is a sport.
I'm headed back to the gym for the second time,
and "Ms. Runner" better bring her A-Game if she's there again...
I duck when a ball is thrown in my direction, even if it is thrown gently,
and I can't reciprocate the throwing of a ball in anyone else's direction with any sort of accuracy...
whether it is the broad side or narrow side of the barn, so to speak.
My balance is awful because of my MS so I fall frequently, once I fell and broke my arm...
while walking....
Just.Walking.
Well in all honesty, I was chewing gum at the same time.
So it was a pretty big surprise when I decided to join a gym.
BWAHHAHHAAAHHAAAAA!!
Me...and a gym???
I'm just the girl who ought to join a gym...
so I can hang out with all the athletic people and their ripped physiques...
because my physique is sooo ripped...
not!
I'm more of a hail damage thigh and arm flab flappin' kinda girl.
You know what arm flab is right?
In the event you have been spared this particular gift, it's the flab that hangs from the back of your arm and flaps when dangled as you raise your arms...
Actually, if you are standing behind me on a windy day, there's a good chance you are going to look like my East Coast buddy here from my arm flab smacking you in the face...
I'm just not into sports and athletics...
However,
I do like to walk.
But,
you say,
walking isn't a sport.
Walking is just a "leisure activity".
Not the way I do it.
I am the most competitive person on the entire planet.
That is actually not a good thing because I take it way too far.
Like my first day at the gym...
I joined because they had an indoor track and in the cold weather of winter, I would have to walk on my treadmill day after day after day,
and I do not enjoy walking on a treadmill, repetitively stepping a few inches on a conveyor belt gets a bit boring after a few weeks,
and it makes me feel like George...
or Astro.
Ruh roh!
At least an indoor track gives me a chance to move in a tight circle...
(yup, nothing repetitive and boring about that)
Now I did mention that I'm the most competitive person on the planet and I believe that adding in an element of competition is the key to changing an "activity" into a "sport".
That's how walking is a sport...let me explain...
I strap on my heart monitor....cue up my app to track my speed and distance...put knee braces on both legs (did I mention I'm older than dirt?), and I connect my blu-tooth headphones to my i-phone, crank up my tunes...
(we should pause at tunes because that is an incredibly important part of the motivation/inspiration for walking in a "sport-like" manner. One must have an eclectic mix of Usher, Katy Perry, Godsmack, Metallica, Rob Zombie, Ariana Grande, Maroon 5....gotta mix it up and keep it fresh...for proper motivation/inspiration purposes.)
Each time I walk, my goal is to beat my personal best time...11:45 minute mile with no running, only walking.
My heart rate his locked in for a fat burning target, I'm swinging my arms like a crazy person (duck if you are near me due to the arm flap thing) and I am hauling bootie as I walk.
Literally (and sadly). Hauling. My Bootie....
I have one personal goal...
to pass every single person I meet....
especially runners.
Okay...
slowwwwww runners.
Shoot, once I even passed a person riding a bike while I was at the park.
Sure, she had piggy tails and training wheels but I totally smoked her! ;)
My first day at the gym, I encountered a very fit woman, about my age, running. She was obviously a really experienced runner (as was identifiable by her tippy toe running and slim/trim/fit/looking great in spandex legs).
I actively disliked her from the moment I spied how awesome she looked in that spandex. LOL!
She had that "prancy" zip to her step, she was a strong runner, and she made it look easy...
I set my competitive eyes on my her...
Target Aquired...
Lock on...
ENGAGE!
And I hauled my hail dents and flabby flappies...
and cranked up Usher...
and in a few laps I was right next to her.
The instant I stepped two steps in front of her, she picked it up and zipped out in front of me.
WHAT?????
Being the competitive person that I am, my response (inside my head) was..
"Oh....so you wanna play sister, well game ON!!"
And I kicked it in again...and caught her...
again.
BOOM!!
I'm pretty sure I was actually smiling when I passed her the second time.
And then...
she did it again!!
She kicked it into gear and took off to pass me back.
Are you kidding me???
And this time she ran out much further to increase the distance between us.
I considered not chasing her down for a third time.
I rejected that consideration.
My heart rate was now 184.
I was seeing spots due to the lack of oxygen in my body.
My clothes were soaked from the sweat and I'm pretty sure they could hear my breathing in the next city.
I cared not.
I did the only thing one can do when faced with this type of sports-related situation.
I broke out VanHalen's Right Now.
Bish is goin' down.
And I kicked it in again....
and I caught her again...
and she did it again.
For real???
So I literally stopped, put my hands on my hail dented thighs and loudly laughed and yelled, "you go girl".
She pretended not to hear me...pssshhhhhh...
She didn't have headphones on.
I began walking with my arms above my head to cool off...
literally and figuratively...
She pranced past me again as I was cooling down and it took every ounce of self control I had to not talk trash about how she may have actually passed me...
but technically a "walker" had passed her not once,
not twice,
but THREE times that day.
So I repeat...
Walking is not a leisure activity...
it is a sport.
I'm headed back to the gym for the second time,
and "Ms. Runner" better bring her A-Game if she's there again...
Sunday, November 9, 2014
When Your Hair Comes Back....
Our 10 year old autistic son, Braden, had a bone marrow transplant in March of 2014 to try to save his life from a secondary leukemia that was caused by the treatments to save his life from his first type of cancer, neuroblastoma. His 11 year old brother was his perfect match donor.
Our oncology teams in Philadelphia and in Kansas City have never seen a child survive this particular form of leukemia that was induced by treatments after battling neuroblastoma.
Not good.
When you go through a bone marrow transplant process your immune system is completely knocked out so you can accept the donor cells. You have an immune system that is less than that of a fetus.
Seriously.
Since, then Braden has been in isolation. He has been unable to go into places with crowds for the past seven months. Places like school, theaters, indoor play areas, birthday parties, sports games, out door places where he would be digging in the dirt or that have a lot of dust (fungal risk), and pretty much any place that there is a crowd of people.
And because of the autism, he hasn't been able to understand why he can't go. He can't comprehend "you have to wait several months before your immune system is going to be able to handle being around other people or around dirt because it presents a fungal risk before you can do anything fun in places where there are more than 3 people".
So we have simply told him that he can go places "when his hair come back".
For the past seven months, when he has wanted to go someplace that he wasn't allowed to go I would tell him that we could go, but we needed to wait until his "hair comes back".
It was going to take several weeks for his hair to grow back and it was just easier to give him that tangible way to measure when he could go do things again.
He had a wish list of things to do when his hair came back:
* Chuck E Cheese (germ enough for my skin to crawl on a good day...let alone after transplant)
* The College Basketball Experience in down town KC...his favorite place in the entire world
* School
* The Pumpkin Patch
* And the "Fun Fair"... aka..."Worlds of Fun"
It's a pretty simple list...he's not asking for much but they were things he just couldn't do until he was out of isolation.
Well....his hair is back....it's pretty thin but it's back!
And with that hair came...
Chuck E Cheese (still shuddering....)
where he played Skee Ball and Basketball...
and we rubbed his hands every ten minutes with Purell.
We made it to the College Basketball Experience and he was SO happy!!
And we went to not just one pumpkin patch...
But TWO...
And the second one was with friends and we trudged through a muddy corn field breaking ALL the old rules about dirt...
And we added in a few bonuses like feeding koi fish by hand at a pond....
We decorated a pumpkin that had grown on the ground and was covered in dried mud before we washed it...again so illegal with the isolation rules (fungus)...
He even went on a hay ride with all the neighbors dressed as a purple minion for Halloween!
And yes, he even started fourth grade last week.
Okay...so maybe he's not as excited about the whole "doing work thing" at school as he thought he would be but he IS excited to see his friends again! ;)
When Braden went into transplant we didn't know if he would survive that process, we didn't know if the side effects from transplant would be debilitating, and...
we didn't even know if he would be here seven months later for his hair to come back.
What a huge blessing! We are grateful beyond words for every moment...
every detour...
every memory...
because it could all change tomorrow.
Braden has won all of these memories....cANCER lost every one of these days!
TAKE THAT cANCER!
HOPE!
Our oncology teams in Philadelphia and in Kansas City have never seen a child survive this particular form of leukemia that was induced by treatments after battling neuroblastoma.
Not good.
When you go through a bone marrow transplant process your immune system is completely knocked out so you can accept the donor cells. You have an immune system that is less than that of a fetus.
Seriously.
Since, then Braden has been in isolation. He has been unable to go into places with crowds for the past seven months. Places like school, theaters, indoor play areas, birthday parties, sports games, out door places where he would be digging in the dirt or that have a lot of dust (fungal risk), and pretty much any place that there is a crowd of people.
And because of the autism, he hasn't been able to understand why he can't go. He can't comprehend "you have to wait several months before your immune system is going to be able to handle being around other people or around dirt because it presents a fungal risk before you can do anything fun in places where there are more than 3 people".
So we have simply told him that he can go places "when his hair come back".
For the past seven months, when he has wanted to go someplace that he wasn't allowed to go I would tell him that we could go, but we needed to wait until his "hair comes back".
It was going to take several weeks for his hair to grow back and it was just easier to give him that tangible way to measure when he could go do things again.
He had a wish list of things to do when his hair came back:
* Chuck E Cheese (germ enough for my skin to crawl on a good day...let alone after transplant)
* The College Basketball Experience in down town KC...his favorite place in the entire world
* School
* The Pumpkin Patch
* And the "Fun Fair"... aka..."Worlds of Fun"
It's a pretty simple list...he's not asking for much but they were things he just couldn't do until he was out of isolation.
Well....his hair is back....it's pretty thin but it's back!
And with that hair came...
Chuck E Cheese (still shuddering....)
where he played Skee Ball and Basketball...
and we rubbed his hands every ten minutes with Purell.
We made it to the College Basketball Experience and he was SO happy!!
We surprised him with a trip to the "Fun Fair"...
But TWO...
And the second one was with friends and we trudged through a muddy corn field breaking ALL the old rules about dirt...
And we added in a few bonuses like feeding koi fish by hand at a pond....
We decorated a pumpkin that had grown on the ground and was covered in dried mud before we washed it...again so illegal with the isolation rules (fungus)...
He even went on a hay ride with all the neighbors dressed as a purple minion for Halloween!
And yes, he even started fourth grade last week.
Okay...so maybe he's not as excited about the whole "doing work thing" at school as he thought he would be but he IS excited to see his friends again! ;)
When Braden went into transplant we didn't know if he would survive that process, we didn't know if the side effects from transplant would be debilitating, and...
we didn't even know if he would be here seven months later for his hair to come back.
What a huge blessing! We are grateful beyond words for every moment...
every detour...
every memory...
because it could all change tomorrow.
Braden has won all of these memories....cANCER lost every one of these days!
TAKE THAT cANCER!
HOPE!
Monday, September 29, 2014
For Your Good...
I still remember it like it was yesterday.
I had just started chemotherapy for my breast cancer when I got a card in the mail telling me that I could have as many massages as I wanted (for free) to help me be comfortable during chemotherapy.
There was apparently research out there that said they had found that when cancer patients felt more comfortable and had a chance to relax and take care of themselves, the chemotherapy process was easier.
I stood there in disbelief as I read the letter that was sent to me about my unlimited massage offer to help me through my treatment process.
My best friend was at my house and I showed it to her. She read my facial reaction and asked, "What do you think about that?"
I had to consider how to respond.
My then five year old had just been diagnosed with a relapse of his neuroblastoma cancer.
And there was no known cure.
We were sure his fifth birthday was going to be his last.
He had started treatments when I found the lump in my breast.
I knew right away what that lump was, and to be very honest, I really didn't care about my own cancer.
My only concern was my son, who by all physician reports, was dying.
So as I read that card, I was mad.
REALLY mad.
You see, at that time, the clinic at our hospital was so crowded that the chair he sat in for chemo was my lap...
and my lap sat upon on the dirty floor because there were not enough chairs for the kids to sit on.
Seriously!
One time, Braden was playing as he was hooked up to his chemo and a little girl (who was also trying to play while hooked up to her chemo) tripped over his line and de-accessed him enough that the chemo was no longer going into his port, just under his skin forming a large lump.
A very dangerous thing.
My five year old was dying and couldn't even get a chair, but I was offered unlimited massages.
That was the moment that threw me into action.
It was the moment that made me decide that we needed to form a 501(c)(3) to fund research for children with cancer...
so our kids could have a chance for a future.
We did just that and this past weekend, we had our third annual Hope Gala for Braden's Hope For Childhood Cancer. Over 800 were in attendance and we raised about $176,000 to fund awareness and research targeted therapies to shut down the activators of childhood cancers.
And I had chills.
I went to church on Sunday night and one of the songs we sang had the words from Romans 8:28.
I had just started chemotherapy for my breast cancer when I got a card in the mail telling me that I could have as many massages as I wanted (for free) to help me be comfortable during chemotherapy.
There was apparently research out there that said they had found that when cancer patients felt more comfortable and had a chance to relax and take care of themselves, the chemotherapy process was easier.
I stood there in disbelief as I read the letter that was sent to me about my unlimited massage offer to help me through my treatment process.
My best friend was at my house and I showed it to her. She read my facial reaction and asked, "What do you think about that?"
I had to consider how to respond.
My then five year old had just been diagnosed with a relapse of his neuroblastoma cancer.
And there was no known cure.
We were sure his fifth birthday was going to be his last.
He had started treatments when I found the lump in my breast.
I knew right away what that lump was, and to be very honest, I really didn't care about my own cancer.
My only concern was my son, who by all physician reports, was dying.
So as I read that card, I was mad.
REALLY mad.
You see, at that time, the clinic at our hospital was so crowded that the chair he sat in for chemo was my lap...
and my lap sat upon on the dirty floor because there were not enough chairs for the kids to sit on.
Seriously!
One time, Braden was playing as he was hooked up to his chemo and a little girl (who was also trying to play while hooked up to her chemo) tripped over his line and de-accessed him enough that the chemo was no longer going into his port, just under his skin forming a large lump.
A very dangerous thing.
My five year old was dying and couldn't even get a chair, but I was offered unlimited massages.
That was the moment that threw me into action.
It was the moment that made me decide that we needed to form a 501(c)(3) to fund research for children with cancer...
so our kids could have a chance for a future.
We did just that and this past weekend, we had our third annual Hope Gala for Braden's Hope For Childhood Cancer. Over 800 were in attendance and we raised about $176,000 to fund awareness and research targeted therapies to shut down the activators of childhood cancers.
And I had chills.
I went to church on Sunday night and one of the songs we sang had the words from Romans 8:28.
God makes ALL things...not the things we choose to have in our lives....work together for our good.
we certainly didn't choose this crapfest, but ALL things are working together for "our" good.
"Our" good is the good of all children with cancer.
I don't believe God gave us this crapfest...I think that came from the "other guy" but I do believe God holds our hands through every bad moment and that He wants us to use all things for something positive.
During this entire crapfest, I have experienced a lot of positivity and witnessed more acts of selflessness and compassion than I could ever list.
I been blessed by friendships and support from the most amazing people in the entire universe and many of them have joined with us to fight to bring HOPE to our children with cANCER.
And most of them are not people who have children with cancer.
They are just people who care and act to fill a need.
This crapfest has brought more beauty and grace into my life than I could have ever imagined.
Yes, I wish it had never happened, I wish our son didn't have to go through everything he has had to endure.
But the simple truth is that I cannot change our circumstances.
But I CAN choose who I react and I can control what I choose how I act as a result.
So thank you cANCER...thank you for creating the crapfest that led us to...
beautiful selfless people surrounding us...
true friendships...
perspective...
mercy...
kindness...
love...
gratitude for every moment...
...and HOPE.
Braden just turned 10, even after battling a secondary cancer we were told he would not survive a year ago.
TAKE THAT cANCER!!
HOPE wins because
ALL things work together for our good...
if we trust, believe, and have faith that no matter what the answer to our wants and needs, the answers will work together for our good.
We have HOPE that Braden will live a long life and right now that is enough.
Actually, it is more than enough....
it's everything.
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