tag:blogger.com,1999:blog-32630044985211942452024-03-14T04:37:10.314-05:00No! This Is SERIOUSLY My Life!Welcome! I am a married breast cancer survivor, multiple sclerosis fighter, momcologist, childhood cancer foundation president, fun-loving, quirky,determined, persistent, (sometimes bitchy), and HOPEful mom of two sons. My life is focused on finding the simple joys of love, laughter, celebration, detours, and hope every day! And...this is my life...No, SERIOUSLY...it's really my life!! :) Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-3263004498521194245.post-54428959566198048162017-03-30T20:14:00.003-05:002017-03-31T09:27:50.273-05:00My Dad...My dad passed away after a battle with lung cancer on March 24, 2017 at the spry age of 91. He led a good life and I will miss him terribly.<br />
<br />
All three of his children (me included) shared stories of dad at his funeral. This is mine: (okay, the extended version so people wouldn't boo me off stage at the funeral home)<br />
<br />
As I was going through a chest that contained many of my dad's memorabilia items, I found photo of me on my first "big horse", Flick. This picture is of me and Flick when I was about 7 or 8.<br />
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<br />
And it reminded me of a story.<br />
<br />
Pretty much since the day I could speak, I began asking my parents for a big horse. Every day, relentlessly and with incessant nagging, I begged for a big horse.<br />
<br />
And one day my parents showed me my new real horse. We were standing in a pen with a pony they called "Peanuts" and I was pretty confused. I had asked for a BIG horse and this horse was not big.<br />
<br />
He was really very small. I suggested we take him back and trade him in for a big horse but my dad explained that I would need to learn to ride Peanuts because in his words, "If you can ride a Shetland, you can ride anything."<br />
<br />
He was right. That pony was the most stubborn animal I have ever met. I would get on and kick him to get him to go and he would just stand there. I'm pretty sure he was chuckling at my effort.<br />
<br />
But I stuck with it and eventually I learned to ride Peanuts. I reminded my parents of that every day, relentlessly and with incessant nagging, until one day they showed me this big, beautiful, palomino gelding with two white socks and a beautiful white mane and tail. I was about five years old and he absolutely towered over me.<br />
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I was in love from the first minute I saw him. He was gentle and sweet and my new best friend, well second to my best friend Jana Jo, but a close second.<br />
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<br />
And Flick was FAST!! I mean fast. He would eventually become my barrel racing horse as we grew up together. He was so fast that he could smoke any of the other horses we owned, with ease. I loved that about him!<br />
<br />
My dad wouldn't let me ride him alone at first. He led me around the pen and then he allowed me to ride without him leading me but within an arm's length. That grew going outside the pen into the fields and pastures away from the barn but I had to be hooked to a lead that my dad was holding while riding one of our other horses, Cactus.<br />
<br />
And every day I begged him to let me ride without being connected to him but dad said I wasn't ready yet.<br />
<br />
I knew I was ready and I begged him every time we rode to let me go without him until finally one day when we were about a quarter or half mile from the barn, he reached down and unhooked Flick and smiled at me and said I was ready.<br />
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I was SO happy!!! Finally...I had waited all of my life...and being 5 years old that was a REALLLY long time!!<br />
<br />
I smiled and we kept riding but it only took Flick about a minute to realize he was not hooked up to dad and Cactus any longer....and he was so over this riding thing and wanted to go back to the barn.<br />
<br />
SO...Flick turned around and made a bee line for the barn. He ran as fast as he could go. I was holding on with everything I had while screaming, "HELP DADDY!!! I CAN'T STOP HIM!!!" and my dad was shouting, "JUST HOLD ON!!!! DON'T LET GO!!!"<br />
<br />
He couldn't catch me. Cactus was too slow and as a parent now I can only imagine how terrified my dad was for me as he watched his 5 year old daughter bouncing in that saddle screaming and crying for him to help when he couldn't reach her. Falling that far at that speed would not be good and my dad would have known that.<br />
<br />
Flick kept going that fast until we reached the barn where there was fence. He got right up to the fence and put on the brakes, full stop!<br />
<br />
It was like I had been launched from a catapult and I just went flying right straight up and over Flick's head! Fortunately, where I luckily landed in some loose hay on the ground in front of him, and on the other side of the fence.<br />
<br />
And I began screaming and crying!<br />
<br />
I remember my dad rushing over and picking me up. After he made sure there was nothing broken, he began brushing off my britches, pulling the hay out of my hair, and wiping away my tears. And I'm fairly certain he suggested that we not tell mom about this whole thing.<br />
<br />
When I had calmed down enough, he told me that I was going to have to get back on Flick and ride him again, that day.<br />
<br />
What had he just said? Had he not just witnessed the whole runaway train thing? Clearly, I was NOT ready for a big horse. We had all made a grave mistake and we needed to trade Flick back for Peanuts because the dream of having a big horse was just not something that was going to work out for me.<br />
<br />
As I was screaming, crying, and protesting my dad picked me up and just flung me on the saddle and started walking Flick around. I screamed, cried, and protested for quite a long time and dad said nothing. He just kept walking Flick around.<br />
<br />
When I calmed down enough, he pulled the lead off and made me ride Flick by myself. When I had successfully accomplished the mission, he pulled me off the saddle and got down and looked me right in the eyes and said, "Do you know why I made you ride Flick again?"<br />
<br />
The only thing I could think of was that he was a really mean person but he said that was actually not the reason. ;)<br />
<br />
He told me that he made me get back up on that saddle and ride Flick because if I didn't Flick would always know that he had me "buffaloed" and I would never have control of him because he would always know I was scared of him.<br />
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And he told me that I needed to know that even though I was scared and didn't want to do it, I could.<br />
<br />
That lesson has served me very well in life.<br />
<br />
Just get up, brush off your britches, get back in that saddle, and go forward.<br />
<br />
And I see this trait in my sons, most especially Braden who has been fearless and fierce through his two respiratory failures as an infant, autism, three cancer diagnoses/battles. His ability to get back in the saddle every single time absolutely amazes me. In that way, I see my dad every time I look into his eyes.<br />
<br />
I then began to think about not only how this lesson served me well but about how much it said about my dad. My dad was humble, quiet, gentle, kind, patient, and sweet. He never raised his voice and may have been the most agreeable person in the universe. You would not have chosen the words "strong and fierce" to describe him but he was strong and he was fierce.<br />
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My dad was an County Extension Agriculture Agent and he started a corn husking contest in Logan County, Kansas when we lived there. I'm sure that the board he reported to was super excited about his concept and plan. I'm sure more than one probably said,<br />
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"So let us make sure we have this right. You want to have some rows of corn, put a hook in the hands of people, send them down those rows of corn, ask them to shuck the corn and throw it in a wagon and then we will count how many they shucked into the wagon and how many they left behind and choose a winner. It sounds awesome Ross...thrilling and exciting and we are sure there are hundreds of people who will turn out for that."<br />
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But my dad believed it would be a source of community pride and it would bring people into our community by the hundreds for commerce and fun.<br />
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And guess what. It did. Hundreds of people DID turn out and it grew and grew and grew until multiple states adopted corn husking contests!<br />
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<br />
<br />
He was strong.<br />
<br />
And he was fierce.<br />
<br />
And he was also humble and kind.<br />
<br />
Always.<br />
<br />
Along with the picture of Flick and me, I found a note that my dad had saved since 1974 when I was a third grader. I had no idea he had saved this and I didn't even remember typing it.<br />
<br />
Often, my dad would go back to the office at night or on the weekends and I loved to go with him because the Home Economist had an electric typewriter and I would type for hours while he worked.<br />
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This was one of my "masterpieces".<br />
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<br />
It says,<br />
<br />
"I love you very much. You are nice. You drink coffee. You eat chicken. You eat pheasant. You hunt. You're a farmer. You ride horses. You read very much. You ride Cactus when you ride. You use manners at the table. You say please and thank you. You shoot at pheasants but you miss every time you shoot. You shoot at ducks but you miss every time you shoot. You go to the fair. You go out of town. You go to to Hays. You go to Ellis. You go to Hutchinson. You go to WaKeeney. You go everywhere but home you silly goose.<br />
<br />
The End<br />
<br />
By Deliece Your Daughter<br />
<br />
I LOVE YOU!"<br />
<br />
I do love you dad. Thank you for brushing my britches off, picking the hay out of my hair, wiping away my tears and setting me back in the saddle when I was too little to do it by myself.<br />
<br />
And for teaching me how to do it for myself so I could be bigger than my fear.<br />
<br />
I will miss you every day until we meet again in Heaven. I hope to make you proud of me!<br />
<br />
<br />
<br />
<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com2tag:blogger.com,1999:blog-3263004498521194245.post-46013128484313969932016-02-09T17:52:00.003-06:002016-02-10T11:48:53.733-06:00Kindness, it matters...Be kind.<br />
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Kindness means to be friendly, generous and considerate.<br />
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It's pretty simple to understand.<br />
<br />
But somehow, it seems so difficult to live...<br />
<br />
for some...<br />
<br />
not all....<br />
<br />
Let me be clear that being kind doesn't mean that you are never going to disagree with someone,<br />
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that you will never take issue with them,<br />
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that you will always get along with every person you encounter,<br />
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and that you will choose to be friends with everyone you meet.<br />
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Kindness is about being humble...<br />
<br />
and not being a "Bye Felicia" kind of person...<br />
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because none of us is all that...<br />
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we are ALL works in progress...<br />
<br />
and intentionally proclaiming our superiority over others, is certainly not what kindness is about.<br />
<br />
Kindness dictates that we understand the concept of humility before anything else.<br />
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Kindness is about being selfless....<br />
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and giving up your time to listen and appreciate rather than proclaim and judge.<br />
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It doesn't mean we are doormats who never stand up for ourselves or others.<br />
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We all should make our points and then discuss those points.<br />
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We even can agree to disagree on things...<br />
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But then we must move forward...<br />
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Without resentment.<br />
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Kindness is about embracing differences....<br />
<br />
and seeking to actually <i>understand</i> those differences...<br />
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not just tolerate them.<br />
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Kindness is about being unassuming...<br />
<br />
while being willing to learn about different points of view...<br />
<br />
so we can grow....<br />
<br />
because nobody knows everything.<br />
<br />
My 11 year old has autism.<br />
<br />
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.<br />
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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...<br />
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Even when he is not met with the same.<br />
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He teaches me about kindness through his example and by watching others with him.<br />
<br />
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.<br />
<br />
I've watched them sit with him at lunch, when they could sit with "normal" kids. <br />
<br />
I've watched one of his friends comfort him and hold his hand to walk him into class because he was scared.<br />
<br />
I see his friends stop to hug him or give him high fives every morning when he gets to school, every single day.<br />
<br />
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.<br />
<br />
And I have witnessed his friends come to his defense when others do not act with kindness toward him. That makes me grateful...<br />
<br />
and hopeful.<br />
<br />
What if we could all learn to be truly kind like these kids?<br />
<br />
We could all learn this from these children and start to model their examples of generosity, friendship, and compassion.<br />
<br />
What if we all could be<br />
<br />
humble,<br />
<br />
selfless,<br />
<br />
unassuming,<br />
<br />
AND KIND...<br />
<br />
rather than the opposites.<br />
<br />
Because we are all a little bit like the dismissed and belittled "Felicias" of the world...<br />
<br />
we are all a little misunderstood...<br />
<br />
and we are certainly all works in progress.<br />
<br />
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?<br />
<br />
Just be kind.<br />
<br />
It's that simple.<br />
<br />
Be Kind!<br />
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<br />
<br />
<br />
<br />
<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com1tag:blogger.com,1999:blog-3263004498521194245.post-13766189388530329082016-01-26T07:43:00.001-06:002016-01-26T17:48:33.800-06:00Relapsed Neuroblastoma Survivor...January 26, 2011 Braden and I were in Philadelphia for scans.<br />
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<div>
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.</div>
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<br /></div>
<div>
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.</div>
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<br /></div>
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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.</div>
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<br /></div>
<div>
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.</div>
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<br /></div>
<div>
Braden was six. </div>
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<br /></div>
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We went in for scans and then headed to clinic to see Dr. Mosse. She is our oncologist in Philadelphia. </div>
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<br /></div>
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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.</div>
<div>
<br /></div>
<div>
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, "<span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;">I'm just thrilled to be able to tell you that Braden's MIBG scan is completely normal". </span></div>
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<span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;">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.</span></div>
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<span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;">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.</span></div>
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<span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;"><br /></span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;">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". </span></span></span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;"><br /></span></span></span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;">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. </span></span></span><span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;">Dr. Mosse made calls to the NIH and gained us the exception and we would start it a few weeks later. </span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;">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.</span></span></span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;">Somehow, we have been blessed with those five years and today we can say Braden is a neuroblastoma survivor. </span></span></span><span style="background-color: white; color: #38393c; font-family: "arial" , "verdana" , sans-serif; font-size: 14px;">He still has 3 years left to go before he is a secondary leukemia survivor but we are going to celebrate today. </span></div>
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<span style="background-color: white;"><span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="font-size: 14px;">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. </span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">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. </span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">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. </span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">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.</span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">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.</span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">With HOPE!</span></span></span></div>
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<span style="color: #38393c; font-family: "arial" , "verdana" , sans-serif;"><span style="background-color: white;"><span style="font-size: 14px;">TAKE THAT cANCER!</span></span></span></div>
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Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com4tag:blogger.com,1999:blog-3263004498521194245.post-30306708322013048842015-10-07T17:56:00.005-05:002015-10-07T18:46:19.494-05:00My Punkins and Their Pumpkins....We made our annual pilgrimage to the Pumpkin Patch this week. I chose to take them after school was over so all the field trip groups were gone and it would be less busy than on the weekend.<br />
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It was the perfect day, no crowd, cool temperatures, and tons of fun.<br />
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We rode the hay ride out to the pumpkin patch to pick our pumpkins and our boys chose some "unique" specimens.<br />
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Now when I was a kid, we had one pumpkin and it was perfect. It was usually pretty large and always perfectly round with no damage on the outside. Then my brother would carve it on Halloween and mom would put a candle inside of it. It was the classic Halloween scene.<br />
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Well, our boys didn't pick perfect pumpkins. They were far from perfect. They were more like pumpkins that would have been characters in the movie "The Breakfast Club" or pumpkins that would have been found on the Island of Misfits in the movie "Rudolph The Red Nose Reindeer".<br />
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Braden found his first one immediately and he fell in love. It was a "bumpy pumpkin". (they are his favorite kind)<br />
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Those bumpy pumpkins are so ugly and this one was lopsided but he loved it so I picked it up and the backside was all scarred up and dented.</div>
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I showed the bad side to him but he still loved it. I was about to talk him out of it by telling him that it was yucky and ugly when I stopped myself short because I realized something more important than that dented and scarred ugly pumpkin.</div>
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That pumpkin is a lot like Braden. He is perfect and beautiful but when you take his shirt off you see many scars from 8 years of cancer treatments, multiple surgeries, 4 central lines, bone marrow aspirates, stem cell harvests, and tattoos which were markers from his radiation treatments. </div>
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Those scars tell Braden's story. </div>
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And apparently this pumpkin has a story too.</div>
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So we brought it home because it is perfectly imperfect. The fact that he loved it regardless of it's lack of perfection nearly had me in tears. </div>
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There is nothing more beautiful than acceptance and I love his pure and kind heart that looks past imperfections to see beauty.</div>
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His second pumpkin, yes I told him only one pumpkin and then I totally caved, was one that he said looked just like a jack o'lantern pumpkin. The problem is that the top was split open a little bit.</div>
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I opened my mouth to tell him that it wouldn't last very long and would get yucky soon and we would have to throw it away, but then I stopped.</div>
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Again, this is like Braden's story. The doctors have told us more times than we can count that he wasn't going to live and we needed to spend our time well. We chose to fight and to make memories with the time that we were given.</div>
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So we have one pumpkin that isn't going to last as long but until then, it's going to be on the front porch with the others proudly displayed.</div>
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We walked back through the patch to find Zach. He's a 7th grader and apparently there is an unwritten law that says that you cannot be seen with your mother and little brother in a pumpkin patch so he was far.....far away searching for his pumpkin.</div>
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I had not been given the memo about pumpkin patch etiquette prior to the pumpkin patch visit. (I would have still made him come with us though) ;) </div>
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Something about it totally throwing off his street cred??</div>
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We found Zach, with the hood of his jacket covering his face so no one would recognize him.</div>
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He had two small pumpkins in his hands.</div>
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Yes, once again I said only one pumpkin and then I totally caved. But I was really excited because they looked pretty perfect to me.</div>
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I caved because he explained that he found each of them hidden under large pumpkin leaves where no one could find them. He said they wouldn't be seen and no one would choose them so he wanted to bring them home because they should be noticed.</div>
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I melted. </div>
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And nearly cried again.</div>
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These pumpkins are just like Zach. Quietly hidden away hoping to be noticed for how special he really is. He's never vocal about it but being the sibling of a kid with cancer is a tough row to hoe. Nearly all the attention is on the child with cancer because you are fighting to save his life. </div>
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It's not fair and we do try to even it out and our friends help try to even it out, but it's the truth. Zach has been hidden just like these pumpkins.</div>
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I love this boy's heart and compassion. That's my favorite thing about him.</div>
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I thought we had all the orange things we needed but at the checkout stand, Zach found a gourd and wanted to get a small one because he said it was tradition. </div>
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I do not recall this tradition.</div>
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We bought the gourd.</div>
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That makes 5 pumpkins...when we went for one.</div>
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I'm weak.</div>
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When we put it on the porch, Zach set it on top of one of his smaller pumpkins because he said it was small so it needed a little perch so it would feel special.</div>
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Once again, I teared up.</div>
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Zach is not tall. He often gets made fun of because he's one of the shorter kids in his grade level. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvnO5dyo73yfd3Xos-EoCbajQojPZ2R_aHSnoow7BI2vboJesEUkDTcgAweBUnAnE6jZzC1c5e-BvMGWdQj9y01Mq4EXI7BhbzNnjah6iZVqZj8FzqwQ3bTzf4QJsCCzeTZFQPqOWmfU4/s1600/IMG_4019.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvnO5dyo73yfd3Xos-EoCbajQojPZ2R_aHSnoow7BI2vboJesEUkDTcgAweBUnAnE6jZzC1c5e-BvMGWdQj9y01Mq4EXI7BhbzNnjah6iZVqZj8FzqwQ3bTzf4QJsCCzeTZFQPqOWmfU4/s320/IMG_4019.jpg" width="240" /></a></div>
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I wish I could change that, I wish people could just be kind about sizes of others. </div>
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And I wish we could all be a little kinder to ourselves about our own sizes too. </div>
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So our "Breakfast Club"/ "Island of Misfits" pumpkins were specially chosen by my punkins and they have meaning.</div>
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None is perfect, each has its own issues and imperfections...</div>
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In their simplest of terms they are:</div>
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bumpy...</div>
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scarred...</div>
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broken....</div>
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overlooked...</div>
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and judged by size...</div>
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But, as they said in the Breakfast Club, aren't we all just a little bit of each of those things as well?</div>
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What if we could all accept our own imperfections and the imperfections of others as easily as my guys did with these silly pumpkins...</div>
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Now that would be perfect.</div>
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com10tag:blogger.com,1999:blog-3263004498521194245.post-37583731315230930852015-08-09T08:46:00.001-05:002015-08-09T10:23:25.955-05:00Never 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.<br />
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August 1st was Miranda Day, the day she was born and the day she earned her angel wings.<br />
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She would have been 14.<br />
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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.<br />
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I also learned that God is ALWAYS good. Always. Even when we don't get the answer we wanted when we pray.<br />
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I prayed for Miranda to live, but she died. <br />
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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.<br />
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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.<br />
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It's. Just. Bad. Stuff and you have to get through it, either in one piece or in several.<br />
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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.<br />
<br />
It's not always enjoyable...and certainly the circumstances that we need to persevere through are not desirable...<br />
<br />
but the way to win over those tough things (like cancer) is to refuse to allow it them to win.<br />
<br />
I'm stubborn.<br />
<br />
Launching a passive aggressive offense comes naturally for me.<br />
<br />
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.<br />
<br />
SOO....I decided to do something really not so smart, illogical, and pretty much absurd...<br />
<br />
and I signed up for a half marathon.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1w2XVzkINwCbaTdKzqRKell98ggSeFLFwvs_nJVzKvUQqmGfGJFTf2Y0Ylp8uNfINh33fU54XXNIVul693huM8houwhvFCJEsWtUjHZAD5zmP98OZjptW-V35czInO2yMSABWVeKWfLA/s1600/deliece+laughing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1w2XVzkINwCbaTdKzqRKell98ggSeFLFwvs_nJVzKvUQqmGfGJFTf2Y0Ylp8uNfINh33fU54XXNIVul693huM8houwhvFCJEsWtUjHZAD5zmP98OZjptW-V35czInO2yMSABWVeKWfLA/s400/deliece+laughing.jpg" width="400" /></a></div>
<br />
<br />
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.<br />
<br />
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.<br />
<br />
So maybe it's not that simple...<br />
<br />
but it IS passive aggressive and totally stubborn.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvOZhQ3jM5Blg6nYP3wxJXFPJH_d1ejBpTuOdGUThqvK2CG9UJ8mNaOZYiKDBzoPAKXJ0XZwgouiG_14hZHsxcjKaZwFb_17AV6XKp3ej3vJyVcpbP2aUfb44g19Opp8_6iwj8to-Tq3U/s1600/Deliece+cheesy+grin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvOZhQ3jM5Blg6nYP3wxJXFPJH_d1ejBpTuOdGUThqvK2CG9UJ8mNaOZYiKDBzoPAKXJ0XZwgouiG_14hZHsxcjKaZwFb_17AV6XKp3ej3vJyVcpbP2aUfb44g19Opp8_6iwj8to-Tq3U/s1600/Deliece+cheesy+grin.jpg" /></a></div>
<br />
<br />
I wanted to do something that would be really hard and seemed impossible...and this sure fits that bill.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I'm so gonna r/alk that half! ;)<br />
<br />
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.<br />
<br />
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.<br />
<br />
Sigh!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc9MzgZHX9u-Azg38LxLBFzbMY_4rxG4Pq1IWfwtZEeR_IvvW4yYoEk0x6pfe8MSOmHtJP2W3Ht53_2Lf18iU8I8le9dvs9hfN_sgM6UWvRdCWqtLCMpSiyjcWNYs86Mz8RbnLPpkiGAI/s1600/Deliece+shirt+front.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc9MzgZHX9u-Azg38LxLBFzbMY_4rxG4Pq1IWfwtZEeR_IvvW4yYoEk0x6pfe8MSOmHtJP2W3Ht53_2Lf18iU8I8le9dvs9hfN_sgM6UWvRdCWqtLCMpSiyjcWNYs86Mz8RbnLPpkiGAI/s400/Deliece+shirt+front.jpg" width="400" /></a></div>
<br />
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.<br />
<br />
And you had to drink a beer at each stop...<br />
<br />
except for the DD....<br />
<br />
and I was the DD (smart me)...you automatically got a checkmark just by getting your passengers there.<br />
<br />
This time, there are no bars listed officially on my shirt...<br />
<br />
(although I'm fairly certain there will be one soon after the finish line)<br />
<br />
The final box gets checked off after I cross that finish line.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhO_vVOgAEojykBeFF57tjjTOgIoNRrkH4GgAtAmSwrVwT8rtHh4_zEl30RAohnOxJwQgK_uGxz0h_C7LbKUAJ82TuwnIH2RVV53PX-vB7CbYAXUBkUJS5eUl_TJkRarllqzMnrHpYtLs/s1600/Deliece+shirt+back.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhO_vVOgAEojykBeFF57tjjTOgIoNRrkH4GgAtAmSwrVwT8rtHh4_zEl30RAohnOxJwQgK_uGxz0h_C7LbKUAJ82TuwnIH2RVV53PX-vB7CbYAXUBkUJS5eUl_TJkRarllqzMnrHpYtLs/s400/Deliece+shirt+back.jpg" width="400" /></a></div>
<br />
<br />
R/alking or crawling....<br />
<br />
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..<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnkTVuGI1bLtUGcSItPH9HzO0XpeX-8Oj21UGYXMywtgVnChrL9oD0leFTquIduMRYq7qyPKpjBwcFcvWCmCV4GJymOWa8d1XsA1JE44YBLKu8xpBTwUpsW9mfv2SGNKuqyJYu3AehwN4/s1600/Deliece+Quinten+shirt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnkTVuGI1bLtUGcSItPH9HzO0XpeX-8Oj21UGYXMywtgVnChrL9oD0leFTquIduMRYq7qyPKpjBwcFcvWCmCV4GJymOWa8d1XsA1JE44YBLKu8xpBTwUpsW9mfv2SGNKuqyJYu3AehwN4/s320/Deliece+Quinten+shirt.jpg" width="320" /></a></div>
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<br />
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.<br />
<br />
The keyword there is "Child". These are kids who should be focused on swinging and running and playing, not fighting cancer.<br />
<br />
And I push through my pain because it doesn't even begin to compare to theirs.<br />
<br />
I'm not very fast...and I'm certainly not always graceful...<br />
<br />
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.<br />
<br />
About mid-way through mile 2, I felt myself begin to fall.<br />
<br />
The last time I fell, I broke my arm....so I was eager to avoid that.<br />
<br />
Instead I threw myself into a baseball type slide on my hip. Jarod Dyson would have been proud!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JqSqk0lnBbufb9JchfKcgX0uZ5JJ4J0VGtDBmiCsRhZWKymznnPgOSscVO36jy-TwmGt7RXVc8xxt11-HXIDS2fxtf1gi7HhYclIeNq9fOEmxYTxPHkUu9R0VLiWQzvpijjl-4c3h-g/s1600/Deliece+Jarod+Dyson.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JqSqk0lnBbufb9JchfKcgX0uZ5JJ4J0VGtDBmiCsRhZWKymznnPgOSscVO36jy-TwmGt7RXVc8xxt11-HXIDS2fxtf1gi7HhYclIeNq9fOEmxYTxPHkUu9R0VLiWQzvpijjl-4c3h-g/s320/Deliece+Jarod+Dyson.jpg" width="320" /></a></div>
<br />
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.<br />
<br />
I was totally on center stage! Awesome!!<br />
<br />
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:<br />
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<br />
Except this guy looks better than I did.<br />
<br />
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!<br />
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Like.A.Boss</div>
<br />
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.<br />
<br />
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?? ;)<br />
<br />
I just need to think about my feet and my balance more when I'm running...<br />
<br />
rather than jamming to Disturbed.<br />
<br />
My half marathon journey is likely to be more falling than flying but I'm going to keep going and Never Ever Give Up!<br />
<br />
I'm taking my life back...even if it does result in falling.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Special thanks to Tug McTighe, Jon Hardesty, and Matt Loehrer at Callahan Creek and Brandon Green at Evergreen Images for the video!<br />
<br />
I hope you like it!!<br />
<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/P4wsVeKl9qo/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/P4wsVeKl9qo?feature=player_embedded" width="320"></iframe></div>
<br />
The YouTube link is: <a href="https://www.youtube.com/watch?v=P4wsVeKl9qo">https://www.youtube.com/watch?v=P4wsVeKl9qo</a><br />
<br />
Today my training schedule says that I can either run or cross train.<br />
<br />
I think I'll pick cross training and save my second favorite capri workout pants from certain disaster!<br />
<br />
One thing I know is that I'm not going to quit....<br />
<br />
No matter how many pairs of capris I have to buy! :)<br />
<br />
TAKE THAT cANCER!<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-7440617265647728062015-07-15T13:26:00.000-05:002015-07-15T22:19:49.376-05:00#TakingItBack2015I've been quiet for a bit and haven't blogged.<br />
<br />
To be honest, I've been trying to figure my life out.<br />
<br />
For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.<br />
<br />
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...<br />
<br />
Braden is in remission from both cancers....<br />
<br />
all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.<br />
<br />
My life has been completely consumed by fighting cancer since December 28, 2007.<br />
<br />
I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.<br />
<br />
No one should ever hear the words, "No Known Cure".<br />
<br />
Period.<br />
<br />
And for the first time in nearly 8 years, we are not in active treatment.<br />
<br />
Seriously.<br />
<br />
He's been actively fighting cancer for that long.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
And there is a great deal of peace in that.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I miss it. And I loathe cANCER for taking it from me.<br />
<br />
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...<br />
<br />
I want back what cANCER stole from me. I want my life back.<br />
<br />
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.<br />
<br />
"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..."<br />
<br />
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.<br />
<br />
But I am going to get back up on the saddle again.<br />
<br />
On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!<br />
<br />
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.<br />
<br />
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.<br />
<br />
So stay tuned for all of continued #TakeThatcANCER moments and new #TakingItBack2015 moments.<br />
<br />
Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;) <br />
<br />
We are taking it back and cANCER is now powerless.<br />
<br />
TAKE THAT cANCER!!<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-83472998022845437422015-03-18T09:22:00.001-05:002015-03-18T09:30:34.399-05:00Last 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.<br />
<br />
Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.<br />
<br />
Well..cancerS had to stay quiet.<br />
<br />
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.<br />
<br />
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.<br />
<br />
But if we didn't do the transplant, he would die from the secondary leukemia.<br />
<br />
Choosing a treatment path was very much like choosing how we wanted Braden to die.<br />
<br />
So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.<br />
<br />
Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.<br />
<br />
Never.<br />
<br />
That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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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. <i>?? </i><br />
<br />
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.<br />
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Then the next leg from Atlanta to Philadelphia...<br />
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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 <i>is</i> pretty cute)<br />
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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. <br />
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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.<br />
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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,<br />
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when it hit me.<br />
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I wasn't sure I would ever hear him say that adorable phrase ever again.<br />
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I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.<br />
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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'...<br />
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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...<br />
<br />
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.<br />
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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. <br />
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March 18, 2014 was another of those times.<br />
<br />
It was so much more than a flight to Philly, with a stop in Atlanta.<br />
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It was the beginning of what we hoped would be a...<br />
<br />
well, what we hoped would be a beginning.<br />
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And thankfully, it was.<br />
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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?"<br />
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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.<br />
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The beauty of today is that we can do whatever we want to do today...<br />
<br />
we can do whatever the <i>four</i> 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.<br />
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Don't take the ability to make choices about what to do with your family each day for granted.<br />
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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...<br />
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remarkable.<br />
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TAKE THAT cANCER!<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com2tag:blogger.com,1999:blog-3263004498521194245.post-17777590335776248032014-12-28T19:25:00.004-06:002014-12-28T19:25:42.738-06:00Future...<header style="box-sizing: border-box; color: #38393c; font-family: Arial, Verdana, sans-serif; font-size: 14px; line-height: 20px;"><h2 style="box-sizing: border-box; color: inherit; font-family: Locator; font-size: 28px; line-height: 32px; margin-bottom: 10px; margin-top: 20px;">
<span style="font-family: Arial, Verdana, sans-serif; font-size: 14px; font-weight: normal; line-height: 20px;">7 years ago on December 28, we stopped using the word "future".</span></h2>
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<br style="box-sizing: border-box;" />We were told that Braden had a 30% chance of surviving his neuroblastoma diagnosis for 5 years.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Then a year and a half later, we were told there was no known cure for his relapse.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />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.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Future hasn't been word I have chosen to use since December 28, 2007.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />It seemed a bit irrelevant...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />and a whole lot sad.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />While the word future isn't my favorite word, and the word past is <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />well, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />emotionally conflicting...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />because it's been a really rough 7 years, but he's still here.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />So what do you do with equally intense amounts of gratitude and anger?<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Quite a quandry.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />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.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />7 years ago everything familiar to our family was wiped out with one x-ray showing a large gray mass.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Braden was oblivious to why his world had been completely changed in every way you could imagine. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />His autism requires constants, routines, and predictability.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He had none of that.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He didn't understand why everything in his life was scrambled because he doesn't even know he has cancer. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He has no concept that this isn't the way we all live.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He didn't know why people were constantly sticking him with needles and tubes,<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He didn't understand why he was hooked up to machines almost 24/7 for over a year.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Why he couldn't see his friends, why he didn't live at home very many days, why he did live at the hospital, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />yet he was still smiling,<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />and enjoying life,<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />while fighting to have a future.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He asks no questions about <strong style="box-sizing: border-box;">why</strong> people are stabbing him with needles, injecting him with poison, holding him down for meds.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He harbors no resentment...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />anger...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />fear...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />doubt...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />worry...<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />or hopelessness.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />He's never wavered in his constant example of positivity, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />perspective, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />love, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />and an immense appreciation for every single breath.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />There's a life lesson there.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />A life lesson I could benefit from, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />a life lesson many of us could benefit from.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />All thanks to cANCER.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />cANCER who thought it was getting the best of this brave knight.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />We would trade every lesson for him to not have to endure all he has gone through in his short lifetime.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Sadly, it doesn't work that way.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />So the best we can do is to try to live with the same happiness, appreciation, love, fight, courage, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />and HOPE that Braden lives with every single minute of his life.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Anything else does nothing to honor his seven year long victory.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />As of today, he's winning and cANCER is losing. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />But, as we were just reminded when we went back for scans in Philly a few weeks ago, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />it could all change at any moment.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />It feels like we are walking over a bridge suspended by a rope that is unraveling.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />And there's Braden, crossing that bridge with his smiling face, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />and the beautiful naivety that accompanies being oblivious to the unraveling rope.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Instead of worrying about the rope and its impending doom, he's happy just because he's still on the bridge.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />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.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />I want to live like Braden. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />I want to be that faithful, trusting, and grateful.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />I'm a work in progress.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />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, <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />is enough.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />And that's all the "future" I care to consider right now.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Braden has taught me that HOPE is the key. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />HOPE is the optimism and the light.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />HOPE shouts "TAKE THAT cANCER".<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />7 years and he's STILL here!<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />"They" thought they knew where the bridge was leading to, and when he would reach his final destination.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />"They" were wrong. <br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />And we keep believing and understanding that while the future is unknown and uncertain, we have today.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />And today is going to be as beautiful and wonderful as we make it, regardless how shaky that bridge is on any given day.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />We live for today, tomorrow isn't promised.<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />We live with HOPE!<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Deliece</div>
Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-1366709392317970202014-11-25T14:12:00.000-06:002014-11-25T14:12:13.419-06:00Thankful 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.<br />
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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<br />
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(coincidentally they are also things I wish I had learned a lot earlier in my life).<br />
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<b><u>Real Friends Are Blessings...</u></b><br />
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.<br />
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<b><u>Conflict, confrontation,and discord...</u></b><br />
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.<br />
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<b><u>Forgiveness...</u></b><br />
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.<br />
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<b><u>Learn To Keep A Secret...</u></b><br />
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".<br />
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<b><u>Anything Worthwhile is Worthy of Fighting For It...</u></b><br />
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. <br />
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<b><u>Grace...</u></b><br />
My mother used to tell me that we show grace, understanding, compassion, and kindness to others not because of who <i>they</i> are, but because of who <i>we</i> 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 <b>you</b>!<br />
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<b><u>God Doesn't Give Us Bad Stuff To Test Us. </u></b><br />
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I simply do not believe that the God I believe in <i>gives</i> 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...<br />
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<b><u>And...Trust</u></b><br />
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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??<br />
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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.<br />
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<b><u>Be Thankful...</u></b><br />
It's really that simple.<br />
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Just.Be.Thankful.<br />
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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.<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-80314283795098460022014-11-18T06:25:00.000-06:002015-10-31T11:39:53.315-05:00It IS a sport...I'm not an athletic girl.<br />
<br />
I duck when a ball is thrown in my direction, even if it is thrown gently,<br />
<br />
and I can't reciprocate the throwing of a ball in anyone else's direction with any sort of accuracy...<br />
<br />
whether it is the broad side or narrow side of the barn, so to speak.<br />
<br />
My balance is awful because of my MS so I fall frequently, once I fell and broke my arm...<br />
<br />
while walking....<br />
<br />
Just.Walking.<br />
<br />
Well in all honesty, I was chewing gum at the same time.<br />
<br />
<br />
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<br />
<br />
So it was a pretty big surprise when I decided to join a gym.<br />
<br />
BWAHHAHHAAAHHAAAAA!!<br />
<br />
Me...and a gym???<br />
<br />
I'm just the girl who ought to join a gym...<br />
<br />
so I can hang out with all the athletic people and their ripped physiques...<br />
<br />
because my physique is sooo ripped...<br />
<br />
not!<br />
<br />
I'm more of a hail damage thigh and arm flab flappin' kinda girl. <br />
<br />
You know what arm flab is right? <br />
<br />
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...<br />
<br />
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...<br />
<br />
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<br />
<br />
I'm just not into sports and athletics...<br />
<br />
However,<br />
<br />
I do like to walk.<br />
<br />
But,<br />
<br />
you say,<br />
<br />
walking isn't a sport.<br />
<br />
Walking is just a "leisure activity".<br />
<br />
<i>Not the way I do it.</i><br />
<br />
I am the most competitive person on the entire planet.<br />
<br />
That is actually not a good thing because I take it way too far.<br />
<br />
Like my first day at the gym...<br />
<br />
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,<br />
<br />
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,<br />
<br />
and it makes me feel like George...<br />
<br />
or Astro.<br />
<br />
Ruh roh!<br />
<br />
<br />
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<br />
<br />
At least an indoor track gives me a chance to move in a tight circle...<br />
<br />
(yup, nothing repetitive and boring about that)<br />
<br />
Now I did mention that I'm the most competitive person on the planet and I believe that adding in an element of <b>competition</b> is the key to changing an "activity" into a "sport".<br />
<br />
That's how walking is a sport...let me explain...<br />
<br />
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...<br />
<br />
(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.)<br />
<br />
Each time I walk, my goal is to beat my personal best time...11:45 minute mile with <i>no</i> running, only walking.<br />
<br />
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.<br />
<br />
Literally (and sadly). Hauling. My Bootie....<br />
<br />
I have one personal goal...<br />
<br />
to pass every single person I meet....<br />
<br />
especially runners.<br />
<br />
Okay...<br />
<br />
<i>slowwwwww</i> runners.<br />
<br />
Shoot, once I even passed a person riding a bike while I was at the park.<br />
<br />
Sure, she had piggy tails and training wheels but I totally smoked her! ;)<br />
<br />
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).<br />
<br />
I actively disliked her from the moment I spied how awesome she looked in that spandex. LOL!<br />
<br />
She had that "prancy" zip to her step, she was a strong runner, and she made it look easy...<br />
<br />
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<br />
<br />
I set my competitive eyes on my her...<br />
<br />
Target Aquired...<br />
<br />
Lock on...<br />
<br />
ENGAGE!<br />
<br />
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<br />
<br />
And I hauled my hail dents and flabby flappies...<br />
<br />
and cranked up Usher...<br />
<br />
and in a few laps I was right next to her.<br />
<br />
The instant I stepped two steps in front of her, she picked it up and zipped out in front of me.<br />
<br />
WHAT?????<br />
<br />
Being the competitive person that I am, my response (inside my head) was..<br />
<br />
"Oh....so you wanna play sister, well game ON!!"<br />
<br />
And I kicked it in again...and caught her...<br />
<br />
again.<br />
<br />
BOOM!!<br />
<br />
I'm pretty sure I was actually smiling when I passed her the second time.<br />
<br />
And then...<br />
<br />
she did it <b>again</b>!!<br />
<br />
She kicked it into gear and took off to pass me back.<br />
<br />
Are you kidding me???<br />
<br />
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<br />
And this time she ran out much further to increase the distance between us.<br />
<br />
I considered not chasing her down for a third time.<br />
<br />
I rejected that consideration.<br />
<br />
My heart rate was now 184.<br />
<br />
I was seeing spots due to the lack of oxygen in my body.<br />
<br />
My clothes were soaked from the sweat and I'm pretty sure they could hear my breathing in the next city.<br />
<br />
I cared not.<br />
<br />
I did the only thing one can do when faced with this type of sports-related situation.<br />
<br />
I broke out VanHalen's <i>Right Now</i>.<br />
<br />
Bish is goin' down.<br />
<br />
And I kicked it in again....<br />
<br />
and I caught her again...<br />
<br />
and she did it again.<br />
<br />
For real???<br />
<br />
So I literally stopped, put my hands on my hail dented thighs and loudly laughed and yelled, "you go girl".<br />
<br />
She pretended not to hear me...pssshhhhhh...<br />
<br />
She didn't have headphones on.<br />
<br />
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<br />
<br />
I began walking with my arms above my head to cool off...<br />
<br />
literally and figuratively...<br />
<br />
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...<br />
<br />
but technically a "walker" had passed her not once,<br />
<br />
not twice,<br />
<br />
but THREE times that day.<br />
<br />
So I repeat...<br />
<br />
Walking is not a leisure activity...<br />
<br />
it is a sport.<br />
<br />
I'm headed back to the gym for the second time,<br />
<br />
and "Ms. Runner" better bring her A-Game if she's there again...<br />
<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-45768244606141410242014-11-14T14:29:00.002-06:002014-11-14T14:29:08.822-06:00Just A Truck...It was just a truck...<br />
<br />
A blue truck...sheet metal, glass, rubber, fiberglass,<br />
<br />
and probably a whole lot of plastic...<br />
<br />
We had it for over 10 years and we just traded it for a "new to us" 2010 vehicle with about 70,000 miles on it because the 140,000 miles were beginning to cost too much to make sense for us to keep it.<br />
<br />
And it was just a truck...<br />
<br />
It had no feelings,<br />
<br />
no physical needs as it sat out in the rain and snow,<br />
<br />
no emotional needs requiring hugs of comfort and quiet understanding.<br />
<br />
But somehow that truck carried a lot of emotions.<br />
<br />
I vividly remember the night that my husband was at the dealership purchasing the truck. I called him at about 5:00 and told him that our 3 month old, Braden, was getting sicker and sicker and having hard time breathing so I was rushing him into the ER and taking with us our 20 month old son, Zach.<br />
<br />
So the sooner he could meet us there, the better.<br />
<br />
Brian was just signing the paperwork as I called and soon he was at the hospital.<br />
<br />
Braden was taken to the children's hospital downtown and immediately placed on life support due to respiratory failure...<br />
<br />
for ten days we sat in the Intensive Care Unit....and hoped he would get better. When he wasn't getting better, I remember crawling into his crib with all the lines attached to him, and I told him that he was going to need to fight.<br />
<br />
Just 3 years earlier, his sister had died 15 hours after she was born due to hypoplastic lungs at birth. She died hemorrhaging and convulsing in my arms as I kissed her and told her how much we loved her, that it was okay for her to go, and that she should look for her Grandma Ross (my mom who had died from brain cancer in 1984) and she would take care of her until I got there.<br />
<br />
I explained to Braden that he was NOT going to get the same speech from me and that he needed to fight and live.<br />
<br />
Inexplicably, shortly after that, Braden started doing better...and in 48 hours we were in a regular hospital room and 24 hours after that, we were home.<br />
<br />
The truck had fallen off our radar at that point, but not off the dealership's radar. They needed us to sign paperwork on the vehicle we had traded in when we bought the truck. We explained that we could not leave the hospital (and frankly didn't really care about the paperwork) so the salesman graciously came to the hospital and Brian left Braden's room long enough to go sign the papers.<br />
<br />
He brought with him a gift for Braden and a book for us to pass the time...and his prayers.<br />
<br />
Then on December 28, 2007, that truck took us back to the same ER because Braden was once again having breathing problems as he had multiple times after that first night. We assumed it was pneumonia again...<br />
<br />
He went in for a chest x-ray and the doctor came back with a horrified look on her face. There was a large gray mass covering most of his torso and she didn't know if it was a tumor or a progressively regressive liver disease.<br />
<br />
They wanted to transport him to the children's hospital downtown in an ambulance but he has autism and that didn't work well the first time because I couldn't sit with him.<br />
<br />
We declined and drove him to the hospital in the blue truck. He looked out the window and said, "moon" when he spied a full moon. Brian and I both remarked that we knew that what we were heading to the hospital for was going to change our lives forever but there was Braden staring out the window of that blue truck celebrating the beauty of the moon.<br />
<br />
It set the tone for how we wanted to try to keep perspective for whatever it was he would be fighting.<br />
<br />
It was cancer....and we've spent every day of the past almost 7 years since fighting Braden's cancer.<br />
<br />
That truck has driven through snowstorms to get us back to the ER because he had spiked fevers that could be a central line infection which is life threatening. Snowstorms so bad all reports said to not get out on the road because it was too dangerous...but the blue truck got us to the ER safely.<br />
<br />
There have been happy trips too...Zach's flag football games, his baseball games, drum lessons, school music programs, culinary classes...<br />
<br />
It took Zach to his first day of preschool...then kindergarten and up to sixth grade, and it took Braden to his first day of preschool and up to fourth grade (what a huge blessing from God).<br />
<br />
It's gone through infant car seats, booster seats, and now to just big boys sitting in its bare seats...<br />
<br />
The truck hauled us to birthday parties for 10 years of memories, it heard a lot of little boy giggles between those doors. <br />
<br />
And road trips....oh the road trips. Filled with me sitting in the middle of the back seat squished between the boys' car seats so I could retrieve toys, snacks, and drinks when they bellowed for them. Two years ago, we took a road trip from Kansas City to Phoenix Arizona and the blue truck faithfully rolled through every mile and hour of endless cactus and beautiful rock formations.<br />
<br />
That blue truck watched our boys grow up and traveled through 10 years of life with us.<br />
<br />
But life isn't like the movie <i>Toy Story</i>...the truck doesn't come alive when we aren't around and have tell stories to the other trucks...<br />
<br />
....at least I don't think so. ;)<br />
<br />
(I admit that when I'm donating toys or throwing away broken ones, I do wonder thanks to that movie.)<br />
<br />
And I wonder what the blue truck would say if it was having a conversation with its friends.<br />
<br />
I probably don't want to know....there was a lot of accidental spit up and puking incidents that occurred while traveling over the years. Some caused by chemo, some caused by really bad reflux...<br />
<br />
Ewww....<br />
<br />
There were a lot of diaper changes in the backseat because I refused to change the boys in filthy public restrooms...that was then followed by scrubbing of the truck seats...<br />
<br />
I imagine the truck would have some of its own stories to tell, if it could...<br />
<br />
It was just a truck.<br />
<br />
But saying goodbye was hard.<br />
<br />
A lot of memories, good and not so good, were made in that truck.<br />
<br />
And I was sad to see it go. I hope it finds good home now and that the new owners treat it well.<br />
<br />
We still have my 12 year old vehicle so we have a vehicle with a longer history than either of our boys as I bought it while I was pregnant with Zach<br />
<br />
...and we have a "new to us" vehicle that we can hopefully make all happy memories in.<br />
<br />
All FOUR of us for a very long time.<br />
<br />
Goodbye "Daddy's Truck" and thanks for the memories.<br />
<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaNHcAN1KF2mt4OMcKbdic-xPsIj_UJ8uaMtqa5SSwDPINSSMUfJjJF4Qtnj_kagibhKqUnl6OzZ0sPKcNV_pRE6TDAjruz7wf36zREBMiy2ecgTz0iwfoTSENxWcqXtcrUasdwtMybM/s1600/IMG_0180.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaNHcAN1KF2mt4OMcKbdic-xPsIj_UJ8uaMtqa5SSwDPINSSMUfJjJF4Qtnj_kagibhKqUnl6OzZ0sPKcNV_pRE6TDAjruz7wf36zREBMiy2ecgTz0iwfoTSENxWcqXtcrUasdwtMybM/s1600/IMG_0180.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Braden saying goodbye to Daddy's Truck</td></tr>
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com2tag:blogger.com,1999:blog-3263004498521194245.post-27714934903069131882014-11-09T18:39:00.001-06:002014-11-09T18:39:33.016-06:00When 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.<br />
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<br />
<br />
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.<br />
<br />
Not good.<br />
<br />
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.<br />
<br />
Seriously.<br />
<br />
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.<br />
<br />
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".<br />
<br />
So we have simply told him that he can go places "when his hair come back".<br />
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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".<br />
<br />
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.<br />
<br />
He had a wish list of things to do when his hair came back:<br />
* Chuck E Cheese (germ enough for my skin to crawl on a good day...let alone after transplant)<br />
* The College Basketball Experience in down town KC...his favorite place in the entire world<br />
* School<br />
* The Pumpkin Patch<br />
* And the "Fun Fair"... aka..."Worlds of Fun"<br />
<br />
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.<br />
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Well....his hair is back....it's pretty thin but it's back!<br />
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<br />
And with that hair came...<br />
<br />
Chuck E Cheese (still shuddering....)<br />
<br />
where he played Skee Ball and Basketball...<br />
<br />
and we rubbed his hands every ten minutes with Purell.<br />
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We made it to the College Basketball Experience and he was SO happy!!<br />
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We surprised him with a trip to the "Fun Fair"...</div>
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And we went to not just one pumpkin patch...<br />
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<br />
But TWO...<br />
<br />
And the second one was with friends and we trudged through a muddy corn field breaking ALL the old rules about dirt...<br />
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<br />
And we added in a few bonuses like feeding koi fish by hand at a pond....<br />
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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)...<br />
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He even went on a hay ride with all the neighbors dressed as a purple minion for Halloween!<br />
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And yes, he even started fourth grade last week.<br />
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<br />
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! ;)<br />
<br />
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...<br />
<br />
we didn't even know if he would be here seven months later for his hair to come back.<br />
<br />
What a huge blessing! We are grateful beyond words for every moment...<br />
<br />
every detour...<br />
<br />
every memory...<br />
<br />
because it could all change tomorrow.<br />
<br />
Braden has won all of these memories....cANCER lost every one of these days!<br />
<br />
TAKE THAT cANCER!<br />
<br />
HOPE!<br />
<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com1tag:blogger.com,1999:blog-3263004498521194245.post-7857732505595380942014-09-29T20:02:00.001-05:002014-09-29T20:02:04.089-05:00For Your Good...I still remember it like it was yesterday.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?"<br />
<br />
I had to consider how to respond.<br />
<br />
My then five year old had just been diagnosed with a relapse of his neuroblastoma cancer.<br />
<br />
And there was no known cure.<br />
<br />
We were sure his fifth birthday was going to be his last.<br />
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<br />
<br />
He had started treatments when I found the lump in my breast.<br />
<br />
I knew right away what that lump was, and to be very honest, I really didn't care about my own cancer.<br />
<br />
My only concern was my son, who by all physician reports, was dying.<br />
<br />
So as I read that card, I was mad.<br />
<br />
REALLY mad.<br />
<br />
You see, at that time, the clinic at our hospital was so crowded that the chair he sat in for chemo was my lap...<br />
<br />
and my lap sat upon on the dirty floor because there were not enough chairs for the kids to sit on.<br />
<br />
Seriously!<br />
<br />
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.<br />
<br />
A very dangerous thing.<br />
<br />
My five year old was dying and couldn't even get a chair, but I was offered unlimited massages.<br />
<br />
That was the moment that threw me into action.<br />
<br />
It was the moment that made me decide that we needed to form a 501(c)(3) to fund research for children with cancer...<br />
<br />
so our kids could have a chance for a future.<br />
<br />
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.<br />
<br />
And I had chills.<br />
<br />
I went to church on Sunday night and one of the songs we sang had the words from Romans 8:28.<br />
<br />
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God makes ALL things...not the things we choose to have in our lives....work together for our good.</div>
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we certainly didn't choose this crapfest, but ALL things are working together for "our" good.</div>
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"Our" good is the good of all children with cancer.</div>
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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.</div>
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During this entire crapfest, I have experienced a lot of positivity and witnessed more acts of selflessness and compassion than I could ever list.</div>
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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.</div>
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And most of them are not people who have children with cancer. </div>
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They are just people who care and act to fill a need.</div>
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This crapfest has brought more beauty and grace into my life than I could have ever imagined.</div>
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Yes, I wish it had never happened, I wish our son didn't have to go through everything he has had to endure.</div>
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But the simple truth is that I cannot change our circumstances. </div>
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But I CAN choose who I react and I can control what I choose how I act as a result. </div>
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So thank you cANCER...thank you for creating the crapfest that led us to...</div>
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beautiful selfless people surrounding us...</div>
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<i>true</i> friendships...</div>
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perspective...</div>
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mercy...</div>
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kindness...</div>
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love...</div>
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gratitude for every moment...</div>
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...and HOPE.</div>
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Braden just turned 10, even after battling a secondary cancer we were told he would not survive a year ago.</div>
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TAKE THAT cANCER!!</div>
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HOPE wins because </div>
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ALL things work together for our good...</div>
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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.</div>
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We have HOPE that Braden will live a long life and right now that is enough.</div>
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Actually, it is more than enough....</div>
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it's everything.</div>
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Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com8tag:blogger.com,1999:blog-3263004498521194245.post-25494815752050001002014-09-08T19:25:00.001-05:002014-09-08T19:25:05.894-05:005 and 10...When Braden relapsed with neuroblastoma, he was weeks away from his fifth birthday on August 11, 2009.<br />
<br />
We were told that he had a less than 10% chance of survival and that there was no known cure.<br />
<br />
The disease continued to spread, but we tried some therapies that had never been tried before and got lucky.<br />
<br />
He went into a second remission and has remained in that remission since January 25, 2011.<br />
<br />
FIVE years ago!<br />
<br />
He had less than a 10% chance of being alive in 5 years.<br />
<br />
AND HE IS STILL HERE!!<br />
<br />
As Braden would say, "Boom Baby!"<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio1kxHsOGDmJILrhHAhq2YxXSrV84Yi2D6ELFPzc5xs5ck__IT57FAJ31lgQwJ7MWEJtDflvecEdo_aqTxDHnFROKgCVZVr0pSwcSsnAKeb9aAp59HOXez8HfBWdfbFgHqr2qzzzRG3o8/s1600/arboretum+sept+25+2011+099.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio1kxHsOGDmJILrhHAhq2YxXSrV84Yi2D6ELFPzc5xs5ck__IT57FAJ31lgQwJ7MWEJtDflvecEdo_aqTxDHnFROKgCVZVr0pSwcSsnAKeb9aAp59HOXez8HfBWdfbFgHqr2qzzzRG3o8/s1600/arboretum+sept+25+2011+099.JPG" height="400" width="267" /></a></div>
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<br />
The time between August 11, 2009 and January 25, 2011 was very rocky and we were told more times than I can count that he was not going to survive and we needed to spend our time wisely and enjoy every day with our son.<br />
<br />
We continued to fight...and more importantly, so did Braden.<br />
<br />
It was a big gamble. We knew that the therapies we were trying could shorten his life even more...<br />
<br />
our hope was that it would bring him more time.<br />
<br />
Nothing is more difficult than making life/death decisions for your child.<br />
<br />
And there is no right answer.<br />
<br />
There is only <i>an</i> answer...<br />
<br />
and faith...<br />
<br />
and HOPE!<br />
<br />
My heart has shattered into a million pieces a million times. It has been held together with duct tape and bailing twine for many years....since our daughter Miranda died on August 1, 2001...<br />
<br />
Some days it feels like my heart has simply hardened into a rock because it's easier to shut out feelings than it is to feel the pain of them.<br />
<br />
I'm a different person today than I was 13 years ago. And that is not all for the best.<br />
<br />
Every time I think that I can't keep doing this, that I'm too tired to keep fighting, I think about all of my friends who have buried their children, and in their empty arms and broken hearts, I find my reason to continue.<br />
<br />
Being able to continue to fight every day, no matter how hard it is, is a blessing!!<br />
<br />
Their loss inspires my fight. Braden's fight and courage and relentless HOPE and positivity give me energy and reason...<br />
<br />
and for that, I am grateful, blessed, and changed in a positive way.<br />
<br />
When Braden turned 5, I believed it was the last birthday he would see.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcDG14VOQmJEhyphenhyphen0Dp9gyyIBn9_3krVqIsvftdKfM3WiIWD2H3-YxRbv9_rch6fmGK8xhv86WO0HYqi-18RpxMGRnSgtx1QO_XlH5TU9uxRK88C907xwIfhq20NGrzspSzVb3Nfn5nFPmQ/s1600/Braden+5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcDG14VOQmJEhyphenhyphen0Dp9gyyIBn9_3krVqIsvftdKfM3WiIWD2H3-YxRbv9_rch6fmGK8xhv86WO0HYqi-18RpxMGRnSgtx1QO_XlH5TU9uxRK88C907xwIfhq20NGrzspSzVb3Nfn5nFPmQ/s1600/Braden+5.jpg" height="400" width="267" /></a></div>
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<br />
Then he turned 6...7....8....<br />
<br />
and at 8, it became a crapfest again as just weeks before his 9th birthday, he was diagnosed with a secondary cancer that was CAUSED by the treatments he had to save his life.<br />
<br />
That is messed up.<br />
<br />
MESSED UP!<br />
<br />
The things that saved his life were now going to be the very things that would end it.<br />
<br />
We were told that he only had a few weeks to a couple of months to live....<br />
<br />
and we needed to spend our time wisely and enjoy the time we had with our son.<br />
<br />
Same message as we had heard multiple times before.<br />
<br />
But this time, the doctors told us they had NEVER seen a child with his initial diagnosis and his secondary diagnosis survive.<br />
<br />
We tried some things that had been done with other children before hoping to buy some time...<br />
<br />
to delay the end.<br />
<br />
And then came the hope again.<br />
<br />
His cancer responded to the treatment...and our teams began to think he could try for a cure with a bone marrow transplant.<br />
<br />
So we all were tested and his 10 year old brother, Zach, proved to be a perfect match as a bone marrow donor. So he went through transplant and received his brother's bone marrow cells to try to save his life.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicA1n3kswKF_mseOpFfdFysMDahUoyxYmXnySj5Rl6VJj_7lo7jcf3M6EtwU037B7EPt2EaO9E8faI69_bJlz2VA2PwMAdN9Q3K4KcqQpPuWZFiReNZDj3qd8zpo_Jhehjh_0NwydrzZ4/s1600/IMG_5602.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicA1n3kswKF_mseOpFfdFysMDahUoyxYmXnySj5Rl6VJj_7lo7jcf3M6EtwU037B7EPt2EaO9E8faI69_bJlz2VA2PwMAdN9Q3K4KcqQpPuWZFiReNZDj3qd8zpo_Jhehjh_0NwydrzZ4/s1600/IMG_5602.JPG" height="300" width="400" /></a></div>
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<br />
And a year after his secondary cancer diagnosis, he is celebrating his 10th birthday.<br />
<br />
cANCER free!<br />
<br />
It's early in the post transplant process as it's only been about 4.5 months with the new cells. It's all still a crapfest and up in the air. He stands a 50% chance of relapsing with the secondary cancer (a leukemia),<br />
<br />
and because we've replaced his immune system with his brother's any immunity his own cells had developed against neuroblastoma is gone so he stands a high probability of relapse of his neuroblastoma as well.<br />
<br />
But...<br />
<br />
he is turning ten...<br />
<br />
double digits.<br />
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TAKE THAT cANCER!<br />
<br />
He's kicking it's backside.<br />
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<br />
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All thanks to the courage and fight of a tiger...<br />
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the love of an army...<br />
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the protection from a God who is bigger than cANCER...<br />
<br />
and HOPE.<br />
<br />
We weren't supposed to get this day,<br />
<br />
but it's here and we are grateful beyond explanation.<br />
<br />
5 years post relapsed neuroblastoma diagnosis...<br />
<br />
10th birthday.<br />
<br />
Hey cANCER...you lose!<br />
<br />
TAKE THAT!<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com3tag:blogger.com,1999:blog-3263004498521194245.post-449997422546598282014-08-24T08:49:00.002-05:002014-08-24T11:56:41.661-05:00What Not To Do On Vacation...It's really all my fault.<br />
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We were on vacation, driving home from Philly to Kansas City after our 9 year old son's cancer scans.<br />
<br />
Zach, our 11 year old, is a huge history buff. I find him reading historical fiction in his room at all hours of the night. We decided that because of his interest in history and the military, we would make a few stops on the way home that would interest him.<br />
<br />
One of our stops was at Gettysburg.<br />
<br />
Something that was on his list of "Top Things To Do In My Lifetime" and he was beyond giddy.<br />
<br />
We went past the gift store and Zach asked if we could go inside. I knew there was absolutely no way we were walking out of there without something. So we went inside...<br />
<br />
I told you this was all my fault...and that was the <i>first</i> mistake I made that day.<br />
<br />
Once inside, he didn't hesitate one second. He made a mad dash for the small stock of toy musket rifles in the center of the store. Zach is a huge Nerf gun guy and he and his friends fervently defend the world (our yard) from invading forces.<br />
<br />
So I wasn't surprised when he immediately said, "Mom...can I get this musket rifle?"<br />
<br />
I was tired after the stress of scans, but I still had enough energy to say no because it was too big to haul around in the rental car and he didn't need another toy gun.<br />
<br />
So, without skipping a beat, he said, "well then can I get the musket pistol...it's smaller?"<br />
<br />
and then he grinned <i>that</i> grin.<br />
<br />
Moms know the one I'm talking about, it's the one that softens your heart when you are being strong. At that moment, I knew I was weakening in my resolve.<br />
<br />
I wanted to say no, but I was tired of always having to be the one to say no so I did a very bad thing...<br />
<br />
I sighed and said,<br />
<br />
"Ask your father."<br />
<br />
It was a safe answer.<br />
<br />
I knew Brian would say no. It was more than $10, it was big, and he has a hundred Nerf guns and he didn't need another toy gun. It was an illogical thing to buy and Brian is an engineer...driven by logic.<br />
<br />
I recognize it was wrong to pass the task of saying no along to dad so he could be the bad guy, but I am a stay at home mom and I say no four million times a day. I was on vacation for Pete's Sake! I wanted a break from begin the bad guy....<br />
<br />
and I just couldn't bring myself to say no to something that I knew was going to make that smile disappear.<br />
<br />
To make it worse, after I told him to ask his dad...<br />
<br />
I scurried outside the gift shop with our nine year old (like the chicken I was) so I wouldn't even have to see his face when his dream was crushed with the "no" answer that was coming.<br />
<br />
Outside the store and I braced for the sad face that was going to be coming out at any moment. My stomach was churning because even though I knew it was the right decision, I was bummed for him.<br />
<br />
But I did not see a sad face when he walked out the door.<br />
<br />
He came out BEAMING while wearing a civil war blue soldier hat and carrying his new rifle musket over his shoulder.<br />
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<br />
My jaw dropped.<br />
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What had happened? How had my master plan gone so terribly wrong?<br />
<br />
My husband smiled.<br />
<br />
I said, "<b>You let him get it??</b>"<br />
<br />
His shrugged his shoulders and said "well" a lot.<br />
<br />
Lesson one...don't leave the bad work to your spouse because chances are "the grin" is going to melt him too and he is going to cave as well. Chances are he is just as weak as you are...<br />
<br />
Sighhhhhhhh....<br />
<br />
Zach was so happy about his musket. So happy that he could not stop smiling. He cocked and fired it about a thousand times...<br />
<br />
before we even got in the car.<br />
<br />
And then once in the car, he cocked and fired it another thousand times.<br />
<br />
Then once we backed out of the parking space, he cocked and fired in another thousand times...<br />
<br />
and so it continued.<br />
<br />
For <b>hours</b>.<br />
<br />
When we would mention how that constant clicking was "distracting to the driver", he promised he would just hold and not cock it or fire it. That didn't turn out to be the case. And neither of us had the heart to take it away because he was so happy.<br />
<br />
I admit that it is possible that I smiled and mentioned that <i>I </i>was not the one who said yes as the clicking continued.<br />
<br />
Our next stop was outside DC at the National FireArms Museum. Incidentally, this is inside the NRA headquarters.<br />
<br />
Oh goodie!<br />
<br />
I'm not a big "gun" girl.<br />
<br />
Remember Zach's love of the military and all things historical? Well this location made him want to faint from excitement.<br />
<br />
His face was sort of like mine was when I saw the Ghirardelli Chocolate Factory for the first time in San Diego.<br />
<br />
I had arrived "home"!<br />
<br />
Braden and I grew tired of looking at what appeared to me to be the same gun in a thousand cases. Zach informed me that this was not the case as he explained every single fact and figure about every single gun he saw while excitedly gasping and dropping his jaw at each and every one.<br />
<br />
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<br />
<br />
So Braden and I went outside and sat under some trees, played, and waited....<br />
<br />
for them to get out of the gift shop.<br />
<br />
Now,<br />
<br />
you would <b>think</b> that the thousands and thousands and thousands and thousands of clicking and banging noises in the seat directly behind Brian as he drove would be incentive to say no this time,<br />
<br />
right?<br />
<br />
So I wouldn't even need to mention that we didn't need a second toy rifle.<br />
<br />
You would be wrong.<br />
<br />
He came out with some rifle thing that had a pump that allowed him to jerk it in the air and cock it like Arnold in The Terminator.<br />
<br />
AWESOME!<br />
<br />
So now we had TWO guns continuously being cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired...<br />
<br />
(reading that over and over isn't nearly as annoying as hearing them cock and fire over and over and over, trust me)<br />
<br />
But he was so very happy!<br />
<br />
The next morning when we got in the car to head out for the day, the guns were "mistakenly" left in the back where he couldn't reach them while we drove.<br />
<br />
Craziest thing!! How in the world did THAT happen!?<br />
<br />
Lesson #2...do NOT...I repeat NOT allow your child to purchase a toy musket or rifle thingie...<br />
<br />
and then retain it in the vehicle while driving.<br />
<br />
I can still hear the clicking in my head....<br />
<br />
and it's been like two weeks.<br />
<br />
But I can also get to see him smiling from ear to ear.<br />
<br />
Maybe, in retrospect, it all worked out.<br />
<br />
<i>Maybe</i> ;)<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-91631061650824185052014-07-25T19:31:00.005-05:002014-07-25T19:31:52.793-05:00Why...There are a lot of things in life that make me wonder "why". You know, really big life questions that need answers and solutions.<br />
<br />
Things like: Why do rabbits only eat the flowers and plants in my landscape beds and not the weeds?<br />
<br />
I would totally welcome those little "wascals" if they would just eat the weeds rather than destroying what is left of my expensive plants.<br />
<br />
Most of my "why" questions center around my children and this parenting gig. My boys leave me with several questions that cause me to scratch my head in wonder.<br />
<br />
Here are a few:<br />
<br />
<b>Why Do They ALWAYS Begin Causing Trouble The Second I Answer The Phone?</b><br />
<br />
Seriously!<br />
<br />
They can be doing whatever they are doing independently and beautifully for hours but the <i>minute</i> the phone rings it's like a Pavlovian bell throwing them to active duty. <br />
<br />
Suddenly, they both need something or have to tell me something...<br />
<br />
e-freaking-mediately.<br />
<br />
I've even left the room and escaped into the garage to take a call so I could hear the person on the other end.<br />
<br />
I was, of course, locked out by my nine year old who has autism because once a door closes has a tremendous need to lock it...<br />
<br />
e-freaking-mediately.<br />
<br />
Bonus Parent-Trap Tip, it's not that easy to get two giggling boys to let you back into your house when you are knocking and asking them to open the door...right now! Keep a spare key handy in the garage.<br />
<br />
<b>Why Do They Not Care About A Particular Toy For Months Until They See Their Sibling Touching It...</b><br />
<br />
And then suddenly it becomes <i>priceless</i> and their favorite toy <i>ever</i> and "he can have anything else I own but not THAT mom. I love THAT!"<br />
<br />
Sigh....<br />
<br />
and mom eye rolls.<br />
<br />
<b>Why Do They Not Hear You When You Ask Them To Help You With A Chore...</b><br />
<br />
BUT...they can be sound asleep upstairs as you sneak into the freezer and get out the <i>good</i> ice cream you have been hiding WAY in the back and when you start to scoop it into a bowl...<br />
<br />
they suddenly appear in the kitchen and ask to have some ice cream.<br />
<br />
(Not that this has ever happened to me)<br />
<br />
<b>Why Do They Wake Up At 5:30 AM</b>....<br />
<br />
on the only day you can sleep in.<br />
<br />
And as an added bonus they make so much noise "being quiet and waiting patiently for you to wake up just like you told me to do mom" that they wake you up and you can't get back to sleep.<br />
<br />
But, on days when they <b>have</b> to be up, you literally have to roll them out of their beds...<br />
<br />
while they whine and complain about how much noise you are making trying to wake them up so early because they are soooo tired. "Puhlease mom...just five more minutes!!"<br />
<br />
<b>Why Do They Have To Have Funny Retorts To Questions When You Are Mad</b>?<br />
<br />
This happens most often to me when I am talking to myself using my "out loud" voice rather than my "inside my head" voice as steam is billowing out of my ears after my boys have done something bad.<br />
<br />
Usually, it's when they are sitting quietly to "reflect upon their behavior". (That's the 9 and 11 year old version of time out because apparently time out is for babies, so I just renamed it.)<br />
<br />
Boom!<br />
<br />
Here's a recent example...<br />
<br />
"Why in the world would anyone ever think it was a good idea to spray sunscreen all over the side of the car? What could you <i>possibly</i> be thinking the positive result of that action would be?"<br />
<br />
The answer from the non-involved sibling witness, while giggling, was...<br />
<br />
"You gotta admit mom, it is really pretty funny if you think about it for a minute!"<br />
<br />
It's hard to make an effective case for not doing something again, ever, when you are laughing so hard you have tears.<br />
<br />
<b>AND....Why Are They So Darn Adorable When They Sleep?</b><br />
<br />
Nothing is cuter than watching them all curled up, sleeping...<br />
<br />
without talking...<br />
<br />
or spraying sunscreen on cars...<br />
<br />
or fighting over a toy.<br />
<br />
When they are just quiet and sweet and...<br />
<br />
silent.<br />
<br />
I'm pretty sure those moments are the ones that keep me sane...<br />
<br />
'ish.<br />
<br />
Even with all the "whys", I wouldn't trade this mom gig for anything in the world.<br />
<br />
I just keep the wine handy!<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com1tag:blogger.com,1999:blog-3263004498521194245.post-4433540488249110702014-06-29T17:42:00.000-05:002014-06-29T22:35:38.602-05:00Zach...The day our son Zach was born was...well a huge celebration.<br />
<br />
Obviously. Sure, parents celebrate the birth of their children but for us, it was extra special.<br />
<br />
Before Zach was born, we had a daughter, Miranda Grace, who died in my arms 15 hours after she was born due to underdeveloped lungs after a complicated pregnancy and bed rest for 2.5 months.<br />
<br />
We tried again to have a child and had a miscarriage.<br />
<br />
So we picked ourselves up and tried another time. On April 3, 2004, Zachary Dean Hofen entered the world...began crying...<br />
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<br />
and he hasn't stopped making noise since. :)<br />
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<br />
We were so very happy. Life was good.<br />
<br />
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<br />
Like most parents, we wondered what Zach would become...<br />
<br />
achieve...<br />
<br />
and dream of.<br />
<br />
What <i>would</i> his dreams lead him to become...<br />
<br />
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<br />
Would he be ornery....<br />
<br />
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And if so, would we be able to catch him at it....</div>
<br />
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Maybe he would be a water boy....</div>
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Or a pilot....<br />
<br />
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<br />
Or perhaps he would be a famous jet ski dude...<br />
<br />
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Professional fall leaf taster?...</div>
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Santa's co-pilot?...</div>
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We had no idea but the one thing we knew was whatever Zach chose to be, we would always be there, holding his hands, and encouraging him every step.</div>
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But the one role he never saw coming, was the role of big brother.</div>
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This new little guy certainly rocked his world...what was with this new "sharing my parents" thing? </div>
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What happened to "all eyes on me because I'm so cute" way of life?</div>
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And what was with all the crying, stinky diapers, and noise at all hours of the day?</div>
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This brother thing seemed a little "sketchy" but Zach earned the title of "Best Big Brother" quickly.</div>
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And then his baby brother, Braden, got cancer. </div>
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And Zach became a very grown up 4 year old overnight. His family was split into two locations, mom and Braden lived at the hospital and dad and Zach lived at home....</div>
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for over a year. </div>
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Zach visited the hospital and we played. But it wasn't the same as living together.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ5ZxtdCkpJwLNE54H-sigZJlNu3rT0kFZzwLB4Jyd2DzhixQBrEmwlW039EPiBnV8obaLMb1vBTp2DL5WXSnInW3HTBJ1ovLc4BiPRNwYSxOZFUSKQgLpSuEL6b_HE8WBRcFBQZ-hDdE/s1600/DSC_0352.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ5ZxtdCkpJwLNE54H-sigZJlNu3rT0kFZzwLB4Jyd2DzhixQBrEmwlW039EPiBnV8obaLMb1vBTp2DL5WXSnInW3HTBJ1ovLc4BiPRNwYSxOZFUSKQgLpSuEL6b_HE8WBRcFBQZ-hDdE/s1600/DSC_0352.JPG" height="267" width="400" /></a></div>
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Everyone's world changed overnight with that diagnosis. And Braden has been fighting cancer continuously for 6.5 years</div>
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And mom got cancer too so both his mom and brother fought cancer together.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6UvmtDeCbqQN3i31tsmKVW12qcMNvxN6Dkm0B8DF4MMAWNEXUdlfSyZ0Of5tbEExasipNZ8gEis2s0WrljhdiAOyhiqygDrAw3w0VbQ5wuwlCd2AaSxSVXYskzxj32pBkyYA8IKsQSbE/s1600/Bald+heads.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6UvmtDeCbqQN3i31tsmKVW12qcMNvxN6Dkm0B8DF4MMAWNEXUdlfSyZ0Of5tbEExasipNZ8gEis2s0WrljhdiAOyhiqygDrAw3w0VbQ5wuwlCd2AaSxSVXYskzxj32pBkyYA8IKsQSbE/s1600/Bald+heads.jpg" height="320" width="284" /></a></div>
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Zach's live changed once again...and he became more and more aware that life isn't a guarantee.</div>
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He had to learn lessons of life and death, fear and uncertainty, and brutal realities no one should have to deal with before the age of 7.</div>
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He also learned how awesome people are and how kind they can be in your darkest hour.</div>
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He learned about God and His grace and mercy.</div>
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And he learned about courage, fight, and HOPE!</div>
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Zach continued to grow older while continuing to have a heart of kindness and love.</div>
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And he became a Chef...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn72Nstk-_BMo8DJKs4dyMeAL6wLEsc5zcRkcHW2XKT6ya5v4w7ON756QLUVjWx6PluRu9pFMLSlpj3xLH_NP6zgv4z8V96PKvS0eZAinnx3_yMaIZfrLya5zo4jUbIq6Cg2PyEYPq4oA/s1600/January+27+2013+034.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn72Nstk-_BMo8DJKs4dyMeAL6wLEsc5zcRkcHW2XKT6ya5v4w7ON756QLUVjWx6PluRu9pFMLSlpj3xLH_NP6zgv4z8V96PKvS0eZAinnx3_yMaIZfrLya5zo4jUbIq6Cg2PyEYPq4oA/s1600/January+27+2013+034.JPG" height="400" width="300" /></a></div>
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A candle blower-outer...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBrvFISgKbHf3TrG1pDgpZb8XBfV-sf0_-zNYE-6e8G3AX4t-d5js6RUG5EjGn06rZSmC-bPEkCTCisNjVtsh8tvdjJlkMTTYEaT2wgsK8hvcGN-AfesjdRwFxrCRbj3QBzNfw_C83m8/s1600/birthday+and+teeth+005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBrvFISgKbHf3TrG1pDgpZb8XBfV-sf0_-zNYE-6e8G3AX4t-d5js6RUG5EjGn06rZSmC-bPEkCTCisNjVtsh8tvdjJlkMTTYEaT2wgsK8hvcGN-AfesjdRwFxrCRbj3QBzNfw_C83m8/s1600/birthday+and+teeth+005.JPG" height="267" width="400" /></a></div>
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A giver of smiles...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogxyo2QTAM73nj1FhiauHfASLQtwlRJjN8YmlvhpO09m_wh5u0aWn9wxRdiFHUdW9jBA4NNywBw7cXEOKnLiFs-UMUQeRMGklfTNkBJK8LadinVL3_l3T-K-sA5MzCr8wFTUZwakF38s/s1600/DSC_0442.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogxyo2QTAM73nj1FhiauHfASLQtwlRJjN8YmlvhpO09m_wh5u0aWn9wxRdiFHUdW9jBA4NNywBw7cXEOKnLiFs-UMUQeRMGklfTNkBJK8LadinVL3_l3T-K-sA5MzCr8wFTUZwakF38s/s1600/DSC_0442.JPG" height="267" width="400" /></a></div>
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A patient brother...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1RMHyi_uD_WR6PKTSBht3hc7WqW-ChKLYRsoqmVr1AgxN7I6vAgncPfTE7tzzfbJM3jvAAZaq1XyYVuqfizcujm_zOeX_PYrzP0XaA3dMAci61zKAIyJvejT_wRV72Tf5SWEsvbLagOk/s1600/arboretum+sept+25+2011+133.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1RMHyi_uD_WR6PKTSBht3hc7WqW-ChKLYRsoqmVr1AgxN7I6vAgncPfTE7tzzfbJM3jvAAZaq1XyYVuqfizcujm_zOeX_PYrzP0XaA3dMAci61zKAIyJvejT_wRV72Tf5SWEsvbLagOk/s1600/arboretum+sept+25+2011+133.JPG" height="267" width="400" /></a></div>
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An explorer...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifBw2Pe06LaPe1756K441EHkNNKsqXE8Uwfgfv25E8VIf3MpWRLcWj_GYMoKLfZvdDFJu47DtAqtrgtNdYGmBmouvw5IKycYMova2G1NSvEcHWgS6RjB_EPnAvEt2qlWLk9NjDYIHvRlc/s1600/b+and+z+arboretum.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifBw2Pe06LaPe1756K441EHkNNKsqXE8Uwfgfv25E8VIf3MpWRLcWj_GYMoKLfZvdDFJu47DtAqtrgtNdYGmBmouvw5IKycYMova2G1NSvEcHWgS6RjB_EPnAvEt2qlWLk9NjDYIHvRlc/s1600/b+and+z+arboretum.jpg" height="300" width="400" /></a></div>
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A comedian...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQZSoQ8P2E16yhgkYhXZvPT4Gsga7g34fBKkAxalJQWD1jQ0hGx_5aGKIsjxVVLet5waO62vOptRimYDdqrVnTf2hvknAAfN9JcoO7qgynObYwhpUtgwDhytHOhp18bqNL0Gj-1G6Bugs/s1600/DSC_0418.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQZSoQ8P2E16yhgkYhXZvPT4Gsga7g34fBKkAxalJQWD1jQ0hGx_5aGKIsjxVVLet5waO62vOptRimYDdqrVnTf2hvknAAfN9JcoO7qgynObYwhpUtgwDhytHOhp18bqNL0Gj-1G6Bugs/s1600/DSC_0418.JPG" height="267" width="400" /></a></div>
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Handsome....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-5M_sMxD_gP28fjNLZ_uTg7t3yty9UfaqDfsYJ6KpKQiUdAR5z-X-cyrRD5T5z4F9bp1EXaKFZ2c2YgO5tXEWKsxrBltF22LKA2SB5rXEzpkbpGc8jXKceePPqHr50MrMwQVlEtueDA/s1600/DSC_0084.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-5M_sMxD_gP28fjNLZ_uTg7t3yty9UfaqDfsYJ6KpKQiUdAR5z-X-cyrRD5T5z4F9bp1EXaKFZ2c2YgO5tXEWKsxrBltF22LKA2SB5rXEzpkbpGc8jXKceePPqHr50MrMwQVlEtueDA/s1600/DSC_0084.jpg" height="400" width="267" /></a></div>
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Sweet....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7GgF2sW3XcKBGJ9WNyc2C96KjPMglA1DayAzMiIlD-kTm0ZxD7uB6RuGWopvoxU2XmXEOgyryvuguFQN_yI2yaD7aPW6cZGA-NULkOS7Qlwd1rBLxg6kBcWzKrLGpg7f1mly8HwKK7Lo/s1600/DSC_0016.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7GgF2sW3XcKBGJ9WNyc2C96KjPMglA1DayAzMiIlD-kTm0ZxD7uB6RuGWopvoxU2XmXEOgyryvuguFQN_yI2yaD7aPW6cZGA-NULkOS7Qlwd1rBLxg6kBcWzKrLGpg7f1mly8HwKK7Lo/s1600/DSC_0016.JPG" height="267" width="400" /></a></div>
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An artist...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAtqH4azv5RmYTxW7Gv2wgrxQiPMAcK2ibFq1FeGmfXYb8rD0dKRRlFeuPuqpa0TGZ6eiJdQNOjEBLIaqpFbmo3NcYUSL8-0opvFe2DoYUHc99mnqI_3Zt43AQDVkYCBejbSgu2VYgo7U/s1600/IMG_5061.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAtqH4azv5RmYTxW7Gv2wgrxQiPMAcK2ibFq1FeGmfXYb8rD0dKRRlFeuPuqpa0TGZ6eiJdQNOjEBLIaqpFbmo3NcYUSL8-0opvFe2DoYUHc99mnqI_3Zt43AQDVkYCBejbSgu2VYgo7U/s1600/IMG_5061.jpg" height="300" width="400" /></a></div>
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A friend...<br />
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A military hopeful...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdm_mb5BlfbcmipLff3phgp4LdPYtDIfkPVA-MH9_ehsK8et_RuTOhsFVeBAOJry7f2PEj44-AH2_9k0EDA-9sNYzca-wuJFSKqnweoPvwQSffM7Z2ufcbdorsJlZd298UoM5nTYFD5jw/s1600/IMG_5327.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdm_mb5BlfbcmipLff3phgp4LdPYtDIfkPVA-MH9_ehsK8et_RuTOhsFVeBAOJry7f2PEj44-AH2_9k0EDA-9sNYzca-wuJFSKqnweoPvwQSffM7Z2ufcbdorsJlZd298UoM5nTYFD5jw/s1600/IMG_5327.JPG" height="300" width="400" /></a></div>
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A wrestler...</div>
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A drummer and trombone player...</div>
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A great snowball target...</div>
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And three months ago, at the age of 10, he became a bone marrow donor. </div>
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To try to save his little brother's life.</div>
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There was no other match in the entire world. Zach was the only one...and he was a perfect match.</div>
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Without Zach's bone marrow donation, Braden would have died in a very short time.</div>
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So Zach went through surgery to have his bone marrow extracted and then transfused into his brother.</div>
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Knowing full well that his cells could save Braden's life...</div>
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....or they might not.</div>
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That's a lot for a ten year old to carry on his shoulders.</div>
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After his cells were blessed by the Pastor in the room, Zach said, "Mom, this wasn't much fun but I would do it again."</div>
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And as the nurse transfused Zach's cells into Braden's body, the tubing miraculously formed the shape of a heart...</div>
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Zach didn't just donate his bone marrow.</div>
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He donated his love...</div>
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and brotherly HOPE.</div>
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Zach is a pretty amazing boy and I am blessed to be his mom.</div>
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I thank God for this little boy every single day.</div>
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And I learn from him....every single day.</div>
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I learn what LOVE really means.</div>
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I learn what HOPE really means.</div>
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And I learn that DREAMS take many different forms. </div>
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It's not just about what title you will be called...what caption will be on your pictures.</div>
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It's about what caption your heart wields. </div>
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What your heart shows the world about how to live life by putting other's before yourself....about taking risks to try to save others.</div>
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Zach is eleven now. </div>
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I wonder how many more powerful lesson this young man has to teach me in the next 11.</div>
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I can't wait to find out.</div>
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We love you Zach!</div>
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Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com15tag:blogger.com,1999:blog-3263004498521194245.post-40309451082781370522014-06-06T14:28:00.001-05:002014-06-07T00:09:05.060-05:00Normal...When our son, Braden, was 8 months old, he was playing with one of those shape toy thingies. You put the correct shape in the correct hole. This one was musical and had a big center hole that had a reflective sticker in the bottom of it.<br />
<br />
Braden was sitting in the center of our family room floor and dropping throwing the pieces into the center hole in a very aggressive and focused manner. I as watched with my 20+ year educator eye, I began to freak out.<br />
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I tried showing him what he was supposed to do, even did it hand-over-hand and he got it!<br />
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And then he immediately returned to his repetitive action. I could see that what he was doing was patterned and stimulating behavior.<br />
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And I knew.<br />
<br />
I made some calls, and some evaluations done and although he wasn't old enough for us to make an official diagnosis, we began treating it like what I believed he had...<br />
<br />
autism.<br />
<br />
My heart broke. Our son was a child with autism and life as we had dreamed for him was not going to be a reality. Even with five therapies a week and my husband, me and our sitter working with all day and evening we would not be able to change that fact.<br />
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He wasn't going to be able to have a "normal" future.<br />
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My worry was that he wouldn't be independent, he would never drive a car, get married, have children...all of the things we all assume will happen as a part of the normal growing up process.<br />
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I remember having coffee with a friend who had a son on the spectrum and explaining how I just wanted him to be able to play baseball with his brother in the yard like other children.<br />
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I just wanted things to be <i>normal</i>.<br />
<br />
Then Braden was diagnosed with cancer and has been fighting for 6.5 years. It turns out the autism has been a blessing because he has no idea what "normal" is...<br />
<br />
he doesn't know everyone doesn't feel horrible all the time, he doesn't know everyone doesn't go bald with treatments, he doesn't know everyone doesn't live a large percentage of their lives in hospitals hooked up to tubes and bags of chemo, he doesn't know everyone doesn't get shots all the time...<br />
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He thinks all those things ARE normal. And because of that...he is the happiest boy in the entire world even with his crappy circumstances. It's all about perspective.<br />
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The biggest benefit is that because of his autism, he doesn't know he is supposed to die. He doesn't have to be afraid because he doesn't even know what cancer is or that he is sick. He doesn't have to be afraid.<br />
<br />
I'm grateful for autism now.<br />
<br />
GRATEFUL!<br />
<br />
And I'm not trying to "train" him out of his autism anymore.<br />
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This "different normal" is a gift. And this young man has taught thousands of people about HOPE and FAITH and BRAVERY and FIGHT!<br />
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But....my mommy heart still wants the normal things for Braden.<br />
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Last night after dinner, we went outside to play basketball...Braden's favorite thing in the entire world!<br />
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I noticed some bushes that were very overgrown so I got out the clippers and snuck two feet away from him to clip a few branches. Having a child with autism is like have a two year old all the time, you cannot leave them because you don't know what they will get into or where they will disappear to. There is no "me" time because you are always on watch and that makes things like simply trimming bushes two feet away from him difficult to do.<br />
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I could hear the basketball bouncing so I knew we were good...for a couple of minutes anyway.<br />
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Then I heard two basketballs...his brother, Zach who is 11, joined him.<br />
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Then I heard, "Braden, let's play baseball!"<br />
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Rats...I was going to have to stop trimming so I could help Braden play baseball. <br />
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So I hurried, I clipped fast and furiously so I could get as much done as possible while they got the wiffle balls and bats out. <br />
<br />
And then it happened...the sound of Zach pitching and Braden hitting! Zach was telling Braden "Good hit Braden" and Braden was giggling.<br />
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I came around the corner and this is what I saw...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Hsg5IXaqbGUz8QD5KB5XDE6CCVF1XTpPIqQrgqUnrxovW_GdBmOI0sZacH8OjvJJ2OhrXnyzIMjhYMMTcu1yu1022ofejmmFDctu28l_gWsUzF6JFTPyoE5t4ZZqqkPAM9-a0jnlrUg/s1600/IMG_7058.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Hsg5IXaqbGUz8QD5KB5XDE6CCVF1XTpPIqQrgqUnrxovW_GdBmOI0sZacH8OjvJJ2OhrXnyzIMjhYMMTcu1yu1022ofejmmFDctu28l_gWsUzF6JFTPyoE5t4ZZqqkPAM9-a0jnlrUg/s1600/IMG_7058.jpg" height="480" width="640" /></a></div>
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I gasped...took a picture and just stood and smiled.<br />
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It was happening....the dream I told my friend I wanted and was so sad we wouldn't get.<br />
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My boys playing baseball in the yard by themselves.<br />
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Holy smokes!!<br />
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As I watched smiling with tears running down my cheeks, they completely ignored me and switched places.<br />
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WHAT?<br />
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And they were sharing and taking turns voluntarily?<br />
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I didn't want anyone to pinch me because if I was asleep I did NOT want to be awakened.<br />
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And they kept playing for a long time!<br />
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Aren't they sweet and cute? (proud momma here)<br />
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I was able to go back to trimming the bushes, collecting the branches, and putting them in lawn sacks.</div>
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And that friends...has never happened in 9.5 years!</div>
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I went in the garage to put away the clippers and heard a loud scream and crying.</div>
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I freaked out!</div>
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Braden is only 66 days out of a bone marrow transplant. Zach was perfectly matched his bone marrow donor.</div>
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I SPRINTED outside and saw Braden crouched down on the drive way grabbing his eye. Zach was standing beside him trying to comfort him and crying too explaining that he had accidentally hit the wiffle ball into Braden's eye.</div>
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It left a mark.</div>
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A big, beautiful, red, swollen mark...</div>
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...that was an injury from playing baseball with his brother.</div>
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It wasn't from cancer.</div>
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It wasn't from the autism and not being safely supervised.</div>
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It was from playing baseball like every other kid.</div>
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It was "normal".</div>
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NORMAL!</div>
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That crazy red, swollen eye was a gift.</div>
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And they kept playing baseball. And his eye was all better in about 10 minutes.</div>
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My dream came true! </div>
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Maybe...just maybe...nothing is impossible...</div>
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HOPE!</div>
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com19tag:blogger.com,1999:blog-3263004498521194245.post-2818408085479998412014-05-30T13:48:00.002-05:002014-05-30T14:10:57.294-05:00"Jenny"...I have this friend...<br />
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I really do have more than one friend (giving myself an encouraging high five right now). And each and every one of them has a heart of gold. They are selfless and wonderful and amazing, or they wouldn't be my friends.<br />
<br />
I have zero tolerance for "Mama Drama" females and I quickly walk away and wish people well when that is their specialty. Ain't nobody got time for that!<br />
<br />
Occasionally I like to write about my friends because they are so special, and today is one of those days.<br />
<br />
Now, each of my friends is special for a lot of reasons, But there's this one....and she will want to remain anonymous because she does NOT like to have <i>any</i> attention called to her in any shape or form.<br />
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So to preserve her anonymity, I'll come up with a pseudonym for her. Now let's see....<br />
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Starlight Moonbeam?<br />
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Nah.<br />
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Bat Girl? <br />
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Wonder Woman?<br />
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Hmmmm...closer....<br />
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She-Ra Princess of Power?<br />
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I kinda like that one...<br />
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Wait! Eureka! <br />
<br />
How about....Jenny?<br />
<br />
Yup, that's a great name because it rhymes with many (and she does <i>many</i> things for many people) and it rhymes with penny (because she's raised a bunch of them for kids with cancer) AND it rhymes with Lenny...<br />
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(that one just made me giggle a little when I was running through rhyming words in my head)<br />
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So..."Jenny"... (as we will call her)...is pretty awesome!<br />
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She's smart, kind, giving, funny, silly, and strong.<br />
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She won't agree to any of those descriptors...because she is very, and I mean <b>VERY</b> humble.<br />
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Jenny is one of those people who helps others just because she simply wants to help others and make a difference. It's really that simple.<br />
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I "met" Jenny about 6 years ago when someone put together a race for Braden to raise money for his medical costs. She called me out of the blue and offered to put together a silent auction at the race. I remember vividly saying that we would be honored but it was so much work...was she sure?<br />
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She said of course and then put together a silent auction that raised over $10,000! I had never met her...she just heard about Braden and wanted to help! I was shocked and amazed.<br />
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Along the way, we became friends and I am honored to call her one of my besties. She's the kind of person that makes you a better person just because she's your friend!<br />
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(Maybe I should have gone with She-Ra Princess of Power instead)...<br />
<br />
...hmmmmm....<br />
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Anyway, Jenny was a huge part of starting our charity, Braden's Hope For Childhood Cancer, and has turned dreams into reality through organizing, managing, initiating, acting, and <i>always</i> making a difference for our children with cancer.<br />
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Just because she's a good person and wants to help! She doesn't have a child with cancer. She doesn't get paid to do this. She just wants to help our kids and she spend more hours than I can even begin to count doing it.<br />
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She's completely selfless. So selfless I stand in awe!<br />
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Simply put, she inspires me to be a better person.<br />
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I think out of all of the traits she possesses, the one I admire and respect the most is her humility.<br />
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You can give Jenny a pat on the back for about a full 2 seconds...and then you have to <b>stop it!</b> She really doesn't want any thanks, she is helping from her heart.<br />
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And I mean completely....totally...and selflessly...helping from her heart.<br />
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So because every time I try to thank her in person, she smiles and changes the subject, I'm ratting her out in this blog. <br />
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BOOM!! :) That'll teach her! LOL!!<br />
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People like that earn the greatest gift I can give them...my respect. I don't give that away readily or easily. I totally respect Jenny....or whatever her real name is. ;)<br />
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Jenny is one of those people you just want to be around because....well...she is just that awesome!<br />
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So if you read this "Jenny"...thank you for letting me be your friend!<br />
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I love you!<br />
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Cheers!<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com2tag:blogger.com,1999:blog-3263004498521194245.post-32498993626753274072014-05-16T13:40:00.004-05:002014-05-16T15:19:03.986-05:00Typical East Coast Philly Pholks....We all know the stereotype of "East Coasters"... brash, blunt, loud...<br />
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...you know...the East Coast "attitude" as portrayed on <i>The Desperate Housewives of New Jersey </i>and<i> Jersey Shore.</i><br />
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They are rough and tough and "<i>taulk</i> about drinking <i>caufee</i>" all the time.<br />
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I'm a midwesterner...born and raised. I'm not a city girl. I grew up in the country with wide open spaces, beautiful sunsets, horses, and at least half mile before reaching another neighbor.<br />
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We've been traveling back and forth between Kansas City and Philly for over 5 years for our son's cancer treatment. He's nine now and we are just wrapping up a 2 month long stay in the city.<br />
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I'm used to everyone making eye contact, smiling, and saying hello to everyone we walk past...at the grocery store, mall, walking in the neighborhood, everywhere.<br />
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It's not like that in the city...<br />
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(city folks are laughing out loud right now in acknowledgment)<br />
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I'm a simple country mouse...living the life of a city mouse...<br />
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...with a 9 year old who is bald and wears a big pink mask to protect him from germs after a bone marrow transplant that has left him very immunosuppressed. It's quite a sight and attracts the stares of even seasoned city folks.<br />
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But while we've been here, we have learned a lot about you East Coasters, specifically the Philly Pholks with their bad ass, rough and tumble reputation.<br />
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Yes, East Coasters are direct...and blunt, (<i>my people!! </i>truly the yin to my yang!)<br />
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....but they are also kind...caring...giving...and...<br />
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(they'll really dislike this word)...<br />
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<b>SWEET</b>.<br />
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Let me tell you about a few things these Easter Coasters have done while we have been here.<br />
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There was one family who drove for about 2.5 hours to the hospital to surprise us with two huge baskets of goodies for us as a random act of kindness in celebration of a friend we have in common who would have been 41 that day. I was speechless.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH3cy2E4ccl9j2q6upEXeP3c-A8kzdzrtTodvhLd7fmj0qufxN2uDzWV_ClKExFqMUpNTYHUpiqyqhaP7FWji0po19VxY4ql6gnZ8E0MPWLYhzB0RfSEp2mNZR6uLroE8_UWaIP-HD3B8/s1600/IMG_5743.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH3cy2E4ccl9j2q6upEXeP3c-A8kzdzrtTodvhLd7fmj0qufxN2uDzWV_ClKExFqMUpNTYHUpiqyqhaP7FWji0po19VxY4ql6gnZ8E0MPWLYhzB0RfSEp2mNZR6uLroE8_UWaIP-HD3B8/s1600/IMG_5743.JPG" height="300" width="400" /></a></div>
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Everyone at the hospital was delightful and the nurses (and some of the doctors) played basketball with Braden using the hoop we hung on his door. The child life specialist played with Braden each and every day and she even made him an official CHOP "Dr. Braden" badge. When he was dismissed, they gave him a stethoscope.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFG2hQJLKO3AbRii2VOsGYB3S6toDGTh9_ZgeiegEeT8F-7nDdxp3-4Ol6Ka5lAN3qwpEj-1mCIy8MothlPK96Bs_IfHD0x1Ud5HmwQnLjwlbuUkO7ljIs5cDkh4sPa8zfDkMU4F9Uczo/s1600/IMG_6717.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFG2hQJLKO3AbRii2VOsGYB3S6toDGTh9_ZgeiegEeT8F-7nDdxp3-4Ol6Ka5lAN3qwpEj-1mCIy8MothlPK96Bs_IfHD0x1Ud5HmwQnLjwlbuUkO7ljIs5cDkh4sPa8zfDkMU4F9Uczo/s1600/IMG_6717.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Left to right, our Neuroblastoma APN, Jennifer, Braden, our MDS APN Anne, and Dr. Olson our transplant doctor.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKgjHUp-6b_ioVCLtUzOYNTqyTsJilXBcxNuUbfbXPbwF_IsJQxHvscTz6vEMF8Rehp6RZhsHcV_YtO2KHDnX7f06AiLYKAEcKhA7MS9wmdUXRJBbnXV-hOrQrc-W9zak83MHmIlINCsc/s1600/IMG_5869.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKgjHUp-6b_ioVCLtUzOYNTqyTsJilXBcxNuUbfbXPbwF_IsJQxHvscTz6vEMF8Rehp6RZhsHcV_YtO2KHDnX7f06AiLYKAEcKhA7MS9wmdUXRJBbnXV-hOrQrc-W9zak83MHmIlINCsc/s1600/IMG_5869.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebecca...the child life specialist who played with Braden every day...we LOVE her!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhpsvw2swXrzx7g9QqPU0tFPMfBoiMv5BKHj4G1E92EFUcENUHC2TlbDLvOXvsVQkNwEEPnoCht1NL5xQMaYAJfB0zFq0cIGPjs-FAjcE640vAimSzFlIYcfCepBbwA-L-_UGhgnfL5eA/s1600/IMG_5850.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhpsvw2swXrzx7g9QqPU0tFPMfBoiMv5BKHj4G1E92EFUcENUHC2TlbDLvOXvsVQkNwEEPnoCht1NL5xQMaYAJfB0zFq0cIGPjs-FAjcE640vAimSzFlIYcfCepBbwA-L-_UGhgnfL5eA/s1600/IMG_5850.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Braden cleaning the baby's tubies.</td></tr>
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When we were dismissed from the hospital and had to get a hotel to stay in for nearly a month several local foundations got together and paid for all of it. Each foundation paid for a week of our lodging and that was well over $4,000. I didn't ask any of them, one foundation called the hospital and offered and then asked a fellow foundation to join in. Unimaginable!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq5lkYHwCuOQ_wSueBSZBje0zTrVBm8lfGVZjC1w7h5otdOU_XdCWhejfWAGbn6f-nnrHqY6fPsed7ASIyAB55DdRRPqMCmcKPgBLfzKGs1wXbhqwKxEH3wc_l5NuK23rD1tG-28bBCaU/s1600/IMG_5543.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq5lkYHwCuOQ_wSueBSZBje0zTrVBm8lfGVZjC1w7h5otdOU_XdCWhejfWAGbn6f-nnrHqY6fPsed7ASIyAB55DdRRPqMCmcKPgBLfzKGs1wXbhqwKxEH3wc_l5NuK23rD1tG-28bBCaU/s1600/IMG_5543.jpg" height="303" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ali and Joe McDonough from the Andrew McDonough B+ Foundation</td></tr>
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Local people have reached out to bring things to us that we can't have delivered, like Braden's special yogurt and crackers. A sweet young lady even offered to drive 40 minutes one way to bring us fans when the air conditioning in the hotel went out. And one of my friend's best friends worked at the hospital and she stopped in to bring hugs, best present ever!<br />
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And a visit from my nephew and niece so I could give them hugs and meet my new baby great nephew, Carson! They've been living in Delaware for about a year and I have missed them terribly!! Isn't Carson BEAUTIFUL?? I know I'm biased...but those cheeks!!<br />
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The staff at the hotel we are staying in has been <b>lovely</b> to us. One of the housekeeping ladies we adore saw that I liked hot tea so she brought a beautiful tin of Chinese hot tea for me. Braden always blows her kisses and says hello to all of the folks working each time we go through the door. And they always ask him how he is doing.<br />
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It has been shocking how many people we pass in the streets stare (that's the norm) and then smile and say "Hi" to the bald little boy (which is NOT the norm)<br />
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Just yesterday, one of the men working at a sidewalk cafe outside Comcast Center was talking to Braden from across a fountain and asked him if he would like a fresh cinnamon roll. And the police officers patrolling the streets always stop in their steps to say hello to Braden. (I thought they were supposed to be a especially tough bunch). Hmmmm....<br />
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The guys running the backhoe outside of the hotel digging some sort of trench for new pipes stop and say hello so they can talk "backhoe stuff" with Braden every time we go past them each day. Kind construction guys? That doesn't seem very East Coast.<br />
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A Kansas City friend called a friend who works with the 76'ers and they invited Braden out to the practice facility to play basketball. That's his love...his favorite thing to do in the entire world. And he got to shoot hoops with Greg Foster and some other coaches, he got to sit in the head coach's desk chair. Braden even played a game of "base-ketball". They made it up using one of the pads they use to block in practice and a basketball. It was awesome!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNrf-ND8jgEtj7384MfZXxmHYfOXEak0xajDZaVz6d3wNNOA_dtO-rHaYXaVsKqe6a7v4uhctZrnwZdubG4LRAqNIZwZAczB49Fiw7cOxQGCCydyGgHqHumq2rbqI7N-OKegJRt0OSD_8/s1600/IMG_6495.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNrf-ND8jgEtj7384MfZXxmHYfOXEak0xajDZaVz6d3wNNOA_dtO-rHaYXaVsKqe6a7v4uhctZrnwZdubG4LRAqNIZwZAczB49Fiw7cOxQGCCydyGgHqHumq2rbqI7N-OKegJRt0OSD_8/s1600/IMG_6495.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">base-etball</td></tr>
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We are now officially the biggest Sixers fans in history, FOREVER! </div>
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<br />
Then one of the sweetest ladies I have ever met, Mary, even drove us back to the hotel so we didn't have to get another germy cab. WOW!<br />
<br />
There is no way to express how excited Braden was about that hour spent with the Sixers!! Truly a dream beyond our wildest imagination!<br />
<br />
On our walk yesterday, we saw a HUGE ladder firetruck outside the Courthouse near Logan Square and Braden was flipping out. We stopped to take a picture and the fireman who was in the back part of the truck near the ladder asked if he wanted to get inside the firetruck.<br />
<br />
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<br />
I quickly threw his mask on and they lifted him up to the main cab...and he got to honk the big horn. Yet another group that was not ranking so high on the "tough guy" scale.<br />
<br />
As we walked away, we passed a group of homeless people who are often outside the court house. We pass them every day. Seeing homeless people in Philly is, sadly, not unusual. The city is filled with people on the streets trying to survive. We generally just try to walk past but Braden is a social dude and always wants to say hello. <br />
<br />
We walked past three men sitting near each other under a tree and the man in the middle yelled, "HEY!! SHORTY!!! HELLO!" We slowed, waved, smiled, said hello, and kept walking...<br />
<br />
and he then yelled,<br />
<br />
"GOD BLESS YOU LITTLE MAN!"<br />
<br />
Seriously?<br />
<br />
A <i>homeless</i> <i>man</i> yelling "God bless you little man" to a bald 9 year old.<br />
<br />
I cried...right there on the sidewalk in front of all of them and only narrowly managed to eek out the words, "God bless <b>you</b>!"<br />
<br />
You Philly Pholks aren't nearly as tough and hardened as you want your reputation to be,<br />
<br />
and I'm here to rat you out.<br />
<br />
You are (take a deep breath and brace yourselves)...<br />
<br />
<i>nice</i>.<br />
<br />
In about 48 hours we are leaving Philly and heading back home after 2 months of city life. Leaving with a little boy who feels well and has baby sprouts of hair and, to date, no sign of cancer.<br />
<br />
Home to our friends who have been madly supportive, kind, loving and amazing for the 6.5 years we have been battling. Friends who were kind enough to send flowers to brighten our day, a box of Easter goodies for Braden (and me) and a Mother's Day package filled with cards and a big surprise, countless texts, posts, and messages. They have even sent wine and vodka. BOOM BABY! Man I am one blessed lady to have such amazing friends! :)<br />
<br />
Heading home to daddy, big brother Zach (who donated his bone marrow to try to save his little brother),<br />
<br />
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<br />
<br />
our beta fish and kitty.<br />
<br />
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<br />
Home to our own beds, courtesy of a wonderful Kansas City businessman who is flying us home on his corporate jet because Braden cannot fly on a commercial airline right now due to the immunosuppression. Unreal!<br />
<br />
Home...the most beautiful four letter word in the universe.<br />
<br />
But we are leaving a place that feels a lot like home.<br />
<br />
Thank you Philly! We will be back. In the meantime, we will miss you.<br />
<br />
And we thank you for being so....<br />
<br />
nice.<br />
<br />
(get used to it...I'm going to keep using that four letter word to describe all of you "bad ass" Philly people) :)<br />
<br />
You are beautiful!<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com14tag:blogger.com,1999:blog-3263004498521194245.post-75156335001654691642014-05-14T10:42:00.003-05:002014-05-14T10:51:17.153-05:00BugZilla...<div class="separator" style="clear: both; text-align: center;">
<br /></div>
The day started with the housekeeping lady from the hotel we are staying in after Braden's bone marrow transplant telling me that she always requests to clean our room. She said she told her boss, that lady is SO clean!<br />
<br />
I smiled with pride.<br />
<br />
Yay me.<br />
<br />
I do attack every surface daily with Chlorox wipes, it's important to keep things germ free because of Braden's extremely compromised immune system.<br />
<br />
Then I got a call from a friend in the Philly area asking me if Braden would like to do a painting that could help raise funds for children with cancer. I said we would love it and we set it up for the supplies to be delivered at 10:30 the next morning.<br />
<br />
We've gotten into a really bad sleep pattern while in Philly for 2 months so I knew I would need to have both of us shower the night before so we would have a head start the next morning. It takes about 2 hours to get Braden going with his meds, fluids, and calorie intake.<br />
<br />
Braden was busy with an App on his I-Pad so I decided to shower first. That is a break from our usual routine.<br />
<br />
I warmed the water and got into the shower, shut the shower curtain and noticed a HUGE brown spot on the curtain out of the corner of my eye.<br />
<br />
I focused my eyes on it and noticed it was moving...it's antennae...<br />
<br />
and it was staring at me.<br />
<br />
I think it actually said, "Boo!"<br />
<br />
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<br />
<br />
I'm a country girl. I grew up where we had rattlesnakes outside our door, under our cars, around the foundation of our house, in our barn...everywhere and as result I know that when you see a venomous enemy, you freeze and slowly back away.<br />
<br />
You do not scream.<br />
<br />
But I do NOT like bugs...had it been a rattlesnake, I would have been more composed.<br />
<br />
I didn't scream, but I did inch the shower curtain back slowly...it started to move so I quickly just jumped through the small opening, over the toilet that was blocking my way...<br />
<br />
and ran for my life to the other room.<br />
<br />
I didn't even hesitate, I called the front desk of the hotel and explained there was a cockroach in my shower that was roughly the size of my entire hand and I was too chicken to kill it. I needed help...a brave soul who could kill it for me. The thought of the crunch that was going to happen when it was killed made me ill.<br />
<br />
Seamus was working at the front desk and was the lucky man to answer my phone call. We've been here several weeks so I know everyone, and they know us. Seamus tried not to laugh and said he would get help "right away". <br />
<br />
I explained to Seamus that it was roughly the size of my head and that it would be great if they could hurry.<br />
<br />
Audible giggle...thanks Seamus.<br />
<br />
I knew when they got to our room and saw it, they would agree that it was about 3 foot tall and would likely call animal control to retrieve it.<br />
<br />
They wouldn't be giggling then.<br />
<br />
I waited....<br />
<br />
...and waited...<br />
<br />
...and waited.<br />
<br />
Finally, a knock at the door.<br />
<br />
It was a HUGE man...seriously big, big dude.<br />
<br />
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<br />
I figured this would be a fair fight now...he and BugZilla would be eye to eye and my money was on the brave big dude.<br />
<br />
I couldn't even go back in the bathroom so I stood in the doorway and pointed to which side of the shower curtain BugZilla had taken up residence.<br />
<br />
He wasn't afraid (pssshhhhh) and went in the bathroom...<br />
<br />
and I did the "ew ew ew ew" dance out of his way and against the hallway wall.<br />
<br />
I wanted to be supportive...<br />
<br />
and I wanted to be as far away as possible.<br />
<br />
The Big Dude smacked the shower curtain hard and I could see BugZilla leap with the agility of SpiderMan to the opposite side of the shower wall.<br />
<br />
The Big Dude got his first glimpse of BugZilla and JUMPED back and threw his hands up.<br />
<br />
I resisted the urge to say, "I told you he was HUGE!"...<br />
<br />
...barely. It was SO right on the tip of my tongue.<br />
<br />
He turned around and looked at me with wide eyes and said, "I will be right back, I need to get something."<br />
<br />
Aha...see...even you, Mr. Big Dude, have to get something to kill it with because it's 5 foot tall and has muscles like the Incredible Hulk.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDb9LS1mQ6_Fax155Nt139NU02N9bC4_LucBgFJD1TMNMxGOrpPO3Mxf_m3DpMCGc_rfWl78djoWZeP5n930QkKYL1NBGtAclP3cYrpQbkKTQ4ZeCEUU0Ocx_QtJDflxBnDxEsTg8X1D0/s1600/Hulk.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDb9LS1mQ6_Fax155Nt139NU02N9bC4_LucBgFJD1TMNMxGOrpPO3Mxf_m3DpMCGc_rfWl78djoWZeP5n930QkKYL1NBGtAclP3cYrpQbkKTQ4ZeCEUU0Ocx_QtJDflxBnDxEsTg8X1D0/s1600/Hulk.jpg" height="185" width="400" /></a></div>
<br />
See, I'm NOT such a wimp.<br />
<br />
I said, "So you are going to piss him off and then leave me alone with him?"<br />
<br />
He smiled and we both giggled.<br />
<br />
But I wasn't kidding...<br />
<br />
I was worried.<br />
<br />
So I waited for him to come back with bug killing tools.<br />
<br />
And waited...<br />
<br />
....and waited...<br />
<br />
....and waited.<br />
<br />
Just as I was sure I was going to need to call down again and have them evacuate the hotel, I finally heard a knocked at the door.<br />
<br />
I told him he didn't need to EVER knock to get back in....just come on in...<br />
<br />
And I <i>warned</i> him that I was pretty sure BugZilla was planning his attack...<br />
<br />
and that I feared for his life.<br />
<br />
I've watched movies...<br />
<br />
I know how it works. You see an intruder, leave to get a knife and boom....the enemy has readied an AK-47.<br />
<br />
But Mr. Big Dude was smart and had brought bug killer tools...<br />
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<br />
<br />
...two small boxes.<br />
<br />
Seriously?<br />
<br />
I said, "so your plan is to capture and relocate him?"<br />
<br />
He laughed,<br />
<br />
but my fear for his life was genuine.<br />
<br />
This was a bad idea. This wasn't enough of an arsenal to take on BugZilla.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
I told him my hairspray was right beside the sink if he wanted to stun him before he launched his assault.<br />
<br />
That idea had been suggested by a wise friend on Facebook when I posted a picture of BugZilla...<br />
<br />
(I was afraid we wouldn't survive and I wanted my friends to know what had killed us)<br />
<br />
Mr. Big Dude walked into the bathroom but he wasn't so bold this time. He was VERY cautious...but clearly he was a Big Dude and couldn't appear to be scared out of his damn mind while protecting a mother and child from an armed 6 foot tall cockroach with wings, antennae to use like swords, and with legs hairier than mine after 2 days without shaving.<br />
<br />
(that's pretty hairy)<br />
<br />
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<br />
I moved to the wall and assumed my supportive, yet defensive position. The door was right next to me and I could make a break for it.<br />
<br />
Braden was still watching his movie and although I love him with every fiber of my being...if BugZilla came after us, he was on his own.<br />
<br />
He's 9...maybe BugZilla wouldn't even notice him given that he was three times Braden's size. <i>Perhaps</i>, he would be viewed as a mere crumb compared to hefty momma and Mr. Big Dude.<br />
<br />
At least that's what I hoped.<br />
<br />
Mr. Big Dude began trying to kill BugZilla by swinging his boxes...but BugZilla countered with a direct attack and lunged after him.<br />
<br />
Mr. Big Dude jumped back, but to his credit he got right back in there and continued fighting the good fight.<br />
<br />
I was laughing so hard I was crying...but I was being encouraging saying, "Don't give up...you can do it...we have to kill it because it is going to get US if you don't!"<br />
<br />
He was laughing too...but he was scared and jumping around like a little girl. Even though that was 1,000 times braver than I was at that moment.<br />
<br />
He said, "You have a fighter here for sure!"<br />
<br />
As his position was pushed backed further toward the bathroom door, I left my defensive/supportive position and moved to the other room...it was getting too close to my space for comfort.<br />
<br />
I finally heard a flush.<br />
<br />
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<br />
I walked back to my hallway stand and said, "Are you sure it was dead? If you flushed it and it comes out of that toilet, I am going to lose my damn mind!"<br />
<br />
He laughed and said that it would be on him if it did.<br />
<br />
I looked directly in his eyes and in a very slow voice said,<br />
<br />
"If it comes back out of the toilet, I will hunt you down and kick your ass!"<br />
<br />
We laughed.<br />
<br />
But I was not kidding.<br />
<br />
He called housekeeping...the shower was cleaned and the bathmat replaced because he had apparently squished it on the bathmat.<br />
<br />
I posted that it was dead and about the squishing and my "helpful" friends told me you never squish a cockroach because they have thousands of eggs in their stomachs and the eggs spread from the shoe across the floor and then the eggs hatch everywhere.<br />
<br />
Other helpful friends told me to be sure to watch carefully because BugZilla may have brought friends with him to the party.<br />
<br />
Yea...That'll help me sleep.<br />
<br />
Not.<br />
<br />
I posted that I had tipped Mr. Big Dude $5 for rescuing me and one of my friends responded with a congratulatory remark....<br />
<br />
She noted that I had now officially ordered my first contract hit.<br />
<br />
That one made me laugh out loud.<br />
<br />
And it makes me the "BugFather....<br />
<br />
wait "BugMother...of Philadelphia".<br />
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<br />
Back off bugs....<br />
<br />
I'm out of five dollar bills but I have a whole roll of quarters for the laundry machines.<br />
<br />
I will order more hits should any of you wise guys get any ideas.<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com6tag:blogger.com,1999:blog-3263004498521194245.post-28343429233169408902014-05-08T11:49:00.001-05:002014-05-08T11:49:01.729-05:00Let it go...Braden and I have been 1,000 miles from home for about two months now while he goes through his bone marrow transplant.<br />
<br />
When we left, it was still a gray, dull, and bitterly cold winter. Now it's a colorful, warm, and beautiful spring!<br />
<br />
Our days consist of long walks that last about 2 hours each day (when it's not rainy or cold) in which we have found many little parks, watched spring flowers bloom, collected rocks, watched water fountains, chased white butterflies, talked to pigeons, watched robins pecking worms out of the dirt, talked to the police officers, played basketball in our room, spoken with each new neighbor from our room window as they stood on their balcony below us, chasing down garbage trucks, firetrucks, and ambulances...and various other awesome things.<br />
<br />
You know...the <i>important</i> stuff!<br />
<br />
I have largely unplugged from the WIFI and cell phone world.<br />
<br />
I thought giving that up would be like losing a limb...<br />
<br />
and it sort of was. :) <br />
<br />
But Braden needs me right now and I have one job to do...to get him well....<br />
<br />
...and get us HOME with the people we love!<br />
<br />
And "getting him well" doesn't just mean making sure he gets his meds, electrolytes, 2,000 calories, and 1,700 ml of fluids each and every day...it means keeping him happy and active while we are in isolation and he can't be around people.<br />
<br />
It's hard to be 1,000 miles away from Brian, Zach, and my friends. <br />
<br />
FaceTime is great, but Hugs are much better!<br />
<br />
I have wine :) but....<br />
<br />
Braden just has me.<br />
<br />
So, I have to take my job seriously,<br />
<br />
and not so seriously.<br />
<br />
We take detours every single day. We learned to take detours long ago... <a href="http://deliecehofen.blogspot.com/2013_01_07_archive.html">http://deliecehofen.blogspot.com/2013_01_07_archive.html</a><br />
<br />
But somehow...this time so far away from home and just with Braden is different than simply taking detours.<br />
<br />
I've been granted a rare opportunity to <i>unplug</i> from the hustle and bustle...<br />
<br />
I'm not a minion to my phone and WIFI.<br />
<br />
I am grateful for that technological world because it allows me to keep in contact with my friends and that ROCKS!<br />
<br />
And sure....I do that from home as well, but this "time" is different. <br />
<br />
At home, there is the constant rush of everyday life. Each day I have my checklist of things that must get done and tasks I need to finish.<br />
<br />
I don't have that right now. My friends are taking care of things at home for me. How blessed am I?!<br />
<br />
It did take me a few days to chill out, stop micromanaging, and just "let it go".<br />
<br />
(I'm an admitted control freak...at least I admit that and own that) :)<br />
<br />
What a wondrous gift this "down time" has been. It has allowed me to be on butterfly patrol, climb rocks, giggle, play, and enjoy time with Braden without feeling the constant need to hurry it up so I can "get things done".<br />
<br />
What I'm realizing is that even though we take time to detour, we NEVER get time that has no pressure of the "to do" list and the hustle and bustle...<br />
<br />
the constant "gotta do"....<br />
<br />
...we don't get to ever let it go.<br />
<br />
(and there is no cute snowman implied in that phrase).<br />
<br />
I don't suppose it will ever be like the days of Beaver Cleaver and Aunt Bee from the Andy Griffith Show with hats, dresses, and chats over tea being the event of the day. I'm certain June had a lot of things on her "to do list" with the cleaning and cooking and ironing...<br />
<br />
but things used to be different.<br />
<br />
I've only had my iPhone for about 3 years, I fervently waited because I didn't want to be accessible 24/7. I know myself too well and I can easily get consumed by that accessibility...<br />
<br />
and others being accessible to me.<br />
<br />
I planned for that consumption so I always have my phone ringer shut off. I don't have any notifications set for my phone. The only way I know if someone has called, texted, messaged, emailed, Facebooked, or Tweeted is if I pick my phone up and check.<br />
<br />
BUT...I feel this obligation to be accessible. I have this need to check continually in the event someone needs something right away.<br />
<br />
I didn't used to be that way...growing up I was only accessible during passing periods in the school hallways and occasionally on the weekends via our phone which was in the kitchen where my mom could hear <i>everything</i> I was saying.<br />
<br />
There was no phone in my room,<br />
<br />
and no TV in my room either, just the one in the living room with two channels that the rabbit ears on the console TV could pick up.<br />
<br />
GASP!<br />
<br />
And while I used to moan and groan about all of that (constantly), I now yearn for that "unplugged" time to just be quiet and not have to worry about what has happened and who I didn't get back to while I was unplugged.<br />
<br />
And being stressed about how I need to stop being unplugged because things are building up as I'm quiet,<br />
<br />
and then worrying about how miserable it's going to be to catch up once I plug back in...<br />
<br />
Can I get an AMEN??<br />
<br />
When I was working and was at a meeting all day, I used to then spend hours after work catching up on my emails so others would get the answers they needed right away.<br />
<br />
We are simply too "accessible"...<br />
<br />
ALL the time!<br />
<br />
We don't have down time, we simply can't "let it go" anymore. There's an unspoken expectation that we will answer that work email within a few minutes and if we don't, people are upset or disappointed.<br />
<br />
That's really not a very healthy way to live but we are consumed by this constant accessibility, we have simply given in to that way of life...it's now the norm.<br />
<br />
I am very guilty of perpetuating this new norm. I have a huge need to be responsive, reliable, and accessible,<br />
<br />
but this time in Philly has allowed me to let it go.<br />
<br />
And THAT is a pretty big gift.<br />
<br />
I'm lonely...I miss my 11 year old, husband, kitty, and my friends VERY much but...<br />
<br />
there's never going to be another time like this that the biggest "to do" on the list for the day is collect rocks and watch the construction of a new building with my bald 9 year old.<br />
<br />
I need to figure out how to "let it go" once we get home...<br />
<br />
maybe I can schedule a "let it go" appointment in my electronic planner,<br />
<br />
ask SIRI to create a reminder an hour before,<br />
<br />
and set my meeting reminder for 5 minutes before it's time to relax.<br />
<br />
Since I don't want to turn my notifications on, maybe I'll just stick with the wine thing.<br />
<br />
Whatever it takes, I think we ALL need to find a way to let it go more often! <br />
<br />
<br />
<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com0tag:blogger.com,1999:blog-3263004498521194245.post-18414915902732200482014-04-23T11:36:00.001-05:002014-04-23T12:01:59.475-05:00The Cheetah, The Elephant, and Prom...Last night I couldn't sleep...worried about the results of the bone marrow test that will show if Braden's cancer is gone after his transplant. If it's not, we are in big trouble...so it's one of those things that will keep you up late at night.<br />
<br />
I was watching the Animal Planet (seriously) and a show about African Cats came on, it was narrated by Samuel Jackson.<br />
<br />
(every time I hear his voice is snicker because all I can think of is him narrating the book "Go The "F" To Sleep"...) Giggling now...<br />
<br />
The baby cubs of the lionesses and the momma cheetah were SO adorable. I just wanted to snuggle them (perhaps not the best idea but they were just so huggable) :)<br />
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<br />
The cheetah cubs are playing in the tall grass when two male cheetah brothers approached. Samuel warned us that male cheetahs often will kill small cubs. I wanted to turn it off, but I kept watching...hoping they would be okay.<br />
<br />
The momma defended her babies but they got around her and started attacking her babies.<br />
<br />
I was literally standing in front of the television, pointing my finger and telling the male cheetahs to stop it right now...and telling the babies to run..hide...and where was momma??<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokrgV_bgSPu6XrQBbFVZIhmrDlFE0Y2gbgpQqwwL1yqnyut1ZOdSJJlQK3-qBQVtd9x8aOqX71b1gMyTGKFmgDbZX-Q8NSiLWC3xwnV8Hk5NU2jY3vtMMpQH22gSQ9F_WQvAoy623d_I/s1600/elephant.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokrgV_bgSPu6XrQBbFVZIhmrDlFE0Y2gbgpQqwwL1yqnyut1ZOdSJJlQK3-qBQVtd9x8aOqX71b1gMyTGKFmgDbZX-Q8NSiLWC3xwnV8Hk5NU2jY3vtMMpQH22gSQ9F_WQvAoy623d_I/s1600/elephant.jpg" /></a>It looked like it was over for the babies when a HUGE momma elephant came stomping in, swinging her trunk and bellowing at the brother cheetahs to scare them away.<br />
<br />
Now I was clapping, crying, and yelling, "Oh you GO Momma Elephant!! Kick their asses!"<br />
<br />
After the cheetahs ran for their lives, the elephant just walked away and the babies were safe and sound...and so was the momma.<br />
<br />
Whew...<br />
<br />
I started thinking about how we should all be more like the momma elephant...willing to step in and help someone other than our family and friends just because they needed our assistance.<br />
<br />
Then I remembered the Prom party that was going on when we checked into a hotel the day Braden was dismissed from the hospital's bone marrow transplant unit. Brian was bringing the luggage into the room and he laughed and said there was a HUGE prom party in the room next to us, so it might be a long night.<br />
<br />
We had heard them...I just didn't know it was high school kids and a prom party.<br />
<br />
By about 8:30, it was in full swing and crazy loud. Grandpa Zach (our 11 year old) was quite perturbed and wanted to go next door and tell them to be more respectful and be quiet so people could "think". <br />
<br />
I laughed and wished I could record it and play it for him in about 6 years for his reflection purposes. :)<br />
<br />
They weren't bad, just loud and silly and then about 10:00, they all disappeared. Apparently, going to the actual prom itself.<br />
<br />
I braced myself for their return and the "After Prom" party that was likely coming later that night until the wee hours of the morning.<br />
<br />
About midnight, I heard two loud voices in the hallway and thought, "here we go..."<br />
<br />
The boy was yelling, "Why the "F" are you crying!! QUIT crying" and the girl was sobbing yelling that he had ruined her prom night. After a long argument in the hallway, they went into the room and continued the yelling there.<br />
<br />
Ah...young love (bats eyelashes)<br />
<br />
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<br />
I was bracing the the rest of the gang to join them and trying to go to sleep but then the girl yelled, "Why did you hit me so hard?"<br />
<br />
That got my attention.<br />
<br />
I began listening fairly intently (although I didn't need to try to hear them because every word they were saying was crystal clear and extremely loud). It was a 50-50 yell fest but the boy was very ugly and demeaning in how he was treating the girl. And she was crying profusely in between her verbal assaults, but she was dishing out as well. That went on for at least 30-45 minutes and I just kept listening thinking if I heard him lay hand on her or if she sounded like she was being hurt, I was going over.<br />
<br />
They continued and at one point I heard her say "You ruined my sex life!" to which he replied "I ruined YOUR sex life?"<br />
<br />
I shuddered and thought...<br />
<br />
"T.....M.....I.....Please stop!!!!"<br />
<br />
Then I heard her say, "ouch!"<br />
<br />
That's all it took. I sprang out of bed and told Brian was was going next door because I was worried the guy was hitting his girlfriend and I was out the door before Brian could even get out of bed.<br />
<br />
All I could think was that if this was MY daughter, what would I want someone to do.<br />
<br />
And part of me wanted to get her parents on the phone so I could yell at them and ask them what the hell they were thinking renting a room for the kids to have a pre-prom party in and for her and her boyfriend to spend the night. Maybe Zach gets that whole "disapproving grandpa attitude from someone...gulp!"<br />
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<br />
<br />
I knocked (loudly) on the door. It immediately went silent inside their room. Then footsteps...bumping into the door...whispers of "it's some lady in pajamas"...and finally the door opened.<br />
<br />
The teeny tiny teenage girl stood there in her teenier tinier dress with dried mascara that had run down her cheeks. She said, "yes?"<br />
<br />
She looked fine..no red marks on her (and trust me, I could see most of her skin), her hair wasn't messed up and other than the mascara mess she looked fine, and that bold girl who had been screaming at her boyfriend instantly became a little girl who was scared she was in trouble.<br />
<br />
The dude was no where to be seen but I knew he was there, hiding so I wouldn't know he was there. Apparently he has not been paying attention in school and he didn't know that sound (especially YELLING) travels. LOL!<br />
<br />
I asked her if she was okay and she looked at me with eyes that said, "why in the world would you ask THAT" and said of course she was. I was relieved, but I wanted the dude to know that I knew exactly what was going on in the event he decided to do anything after I left.<br />
<br />
I realized the guy wasn't going to come to the door (chicken) so I very loudly said, "I can hear EVERYTHING! I heard you asking him why he hit you so hard, I heard you say ouch. I hear him yelling at you, calling you horrible names (I told her exactly what he had called her), and both of you throwing the f-bomb at each other every other word. And I came over because I wanted to make sure you were okay and not being hurt."<br />
<br />
She assured me that she was fine and not hurt and apologized profusely for being so loud. I said I wanted to <i>see</i> the dude and she just froze in the doorway. It was obvious he wasn't coming into the light (because again he was NOT there...duh me) so I said, "You need to cool it buddy! You need to stop now because I will come back!"<br />
<br />
Total silence.<br />
<br />
She apologized again and I walked back to our room. Things were much quieter but I could still hear the "talking" and I stayed up until VERY early in the morning to make sure that she was okay.<br />
<br />
The next day, I was mad at myself for not doing more. I had been like Ms. Elephant. I simply had broken up the fight.<br />
<br />
I had not changed the world. I had not educated anyone, I had not helped them resolve whatever they were fighting about, I had not taught them a single thing, I hadn't told the girl to stay the hell away from that guy because he was a jerk and she should NEVER allow anyone to treat her like that...I had merely broken up the argument for that night and made it known that "mom" was listening and would be back if they did it again. <br />
<br />
Just like I do with my own sons when they argue over whose turn it is on the PlayStation.<br />
<br />
I was disappointed with myself for not doing more.<br />
<br />
But...I did a little.<br />
<br />
Just like Ms. Elephant...I did something to change the path the rest of the evening was heading down.<br />
<br />
What a different world it would be if we all did a little. If we didn't just walk past things and we stepped up to offer a hand to someone who was hurting. I didn't do anything huge and awesome...but I was able to settle with my conscience because I had done <i>something</i>.<br />
<br />
I'm blessed to be surrounded by people who do <i>something</i> all the time. Friends who just step up to help because it's the right thing to do. And I realized that this is bey design. I found that "post 40", I have chosen to surround myself with those types of people and let the others who are not like Momma Elephant go in their own direction, without me.<br />
<br />
I'm fortunate to be a part of an entire herd of "Ms. Elephants".<br />
<br />
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<br />
Be like Ms. Elephant and live among a herd of them. <br />
<br />
I promise your life will be blessed as a result!<br />
<br />
And I have now added "snuggle a baby tiger or cheetah" to my bucket list.<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com5tag:blogger.com,1999:blog-3263004498521194245.post-21056773652312425502014-04-14T18:38:00.001-05:002014-04-14T20:32:31.333-05:00Hate...Hate is the only four letter word I refuse to use.<br />
<br />
Ever.<br />
<br />
Others flow, far to freely, on too many occasions.<br />
<br />
So why draw the line at the word hate? What's so bad about <i>that</i> particular word?<br />
<br />
Today, Braden had a surgical procedure to remove his Hickman central line...it is a line that ran through his veins to deliver his chemotherapy and then drugs to counteract the damage that the chemo did to his body.<br />
<br />
It is a rather medieval looking device with long tubes sticking out of his chest that have caps on them to connect to the tubes from the drugs so they can be pumped through his body.<br />
<br />
It's nice that it's gone..it means he is getting better and no longer needs it. We may actually break out of the bone marrow transplant unit at the end of the week,<br />
<br />
a full month earlier than they predicted his earliest dismissal day from the hospital would happen.<br />
<br />
TAKE THAT cANCER!<br />
<br />
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<br />
<br />
They also did a bone marrow aspirate to check his bone marrow for any signs of remaining MDS cells, that's the pre-leukemia Braden has that was caused by the treatments to save his life from relapsing neuroblastoma.<br />
<br />
His body is now fueled by his 11 year old brother's donated bone marrow cells, and he is kicking butt and taking names with this bone marrow transplant,<br />
<br />
But now it gets real. Now we wait for two days to find out if the treatment he just went through has killed the cancer cells....<br />
<br />
...and my stomach is in knots because if it's not gone...<br />
<br />
...I can't even type it,<br />
<br />
Let alone think it.<br />
<br />
It simply <i>has</i> to be gone.<br />
<br />
Braden has been fighting cancer for 6.5 years...<br />
<br />
and he's 9 years old.<br />
<br />
He has no idea what life is like when you are not in continual treatment. He has autism and doesn't even know he has cancer, so he just fights...<br />
<br />
and lives life to the fullest every day with joy and love.<br />
<br />
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<br />
<br />
As he was still in a deep sleep from sedation, he had one single tear dripping from his eye and it broke my heart in a million pieces.<br />
<br />
Braden never cries about his cancer, he hasn't cried ONCE during his bone marrow transplant...to the contrary...<br />
<br />
he has been shooting basketball hoops, playing, and painting beautiful pictures.<br />
<br />
But it does wear on him....and that tear showed it.<br />
<br />
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<br />
<br />
I often hear people tell me how they hate cancer because of what it has done to them or to someone they love.<br />
<br />
And this tear completely ripped my heart out. Just another time cancer was hurting my baby.<br />
<br />
But I will <b>never</b> say that I hate cancer.<br />
<br />
The reason is simple.<br />
<br />
Hate comes from an ugly, evil place.<br />
<br />
Hate is the reason that a grandfather, his 14 year old grandson, and a woman were just shot and killed in my hometown.<br />
<br />
A fourteen year old beautiful boy who had his entire life ahead of him. A grandfather who was lovingly taking him to try out to be a part of a singing group, a dream of his. A woman who was making her weekly visit to her mother at a retirement village.<br />
<br />
Gunned down randomly by a crazy man yelling "Heil Hitler" as they placed him in the police car.<br />
<br />
You see, they were killed at two different Jewish locations, likely because he believed they were Jewish.<br />
<br />
THAT is hate...<br />
<br />
THAT is evil...<br />
<br />
And that is simply horrific...<br />
<br />
and as much as I actively dislike what cancer has done to our son and our family, I simply REFUSE to allow this disease to make me hate.<br />
<br />
I refuse allow cancer to conquer me.<br />
<br />
I refuse to allow it to make me hate.<br />
<br />
cANCER, evil and hatred will never receive my soul.<br />
<br />
As much as I would have chosen another path for our son, it is the path he has had to walk. I would give my life to change that for him, but I cannot. <br />
<br />
cANCER has blessed us in so many ways. We have been shown how much love, support, compassion and true selflessness is in the world. People have shown us all of that with open arms. As they did when the community showed up to welcome Zach home after he arrived from donating his bone marrow to Braden to try to save his life.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA-4nCZ9XoB83VjdOe8ikzs12aR8FiyEo8pOCN0l8KnMCNDAD-TjnCBWZP6ZQLb6bEZJceA3l7lddZQGe5RSyAuSNSgbLWdnj04uP60Wy7-IHxQfKXh5MJ4kmXMpqc1dPqXM0rb93vYLE/s1600/Zach's+crowd.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA-4nCZ9XoB83VjdOe8ikzs12aR8FiyEo8pOCN0l8KnMCNDAD-TjnCBWZP6ZQLb6bEZJceA3l7lddZQGe5RSyAuSNSgbLWdnj04uP60Wy7-IHxQfKXh5MJ4kmXMpqc1dPqXM0rb93vYLE/s1600/Zach's+crowd.jpg" height="424" width="640" /></a></div>
<br />
THAT is love.<br />
<br />
THAT is goodness.<br />
<br />
So in a very twisted turn of events, cANCER has brought beauty and grace to our lives by showing us exactly how much more good there is in the world than evil.<br />
<br />
My heart <i>breaks</i> because of our son's one single tear dripping from his eye.<br />
<br />
I allow myself to feel sadness and fear because I am human,<br />
<br />
but I get back up and I fight every single day because I refuse to allow hate in my life in any way shape or form.<br />
<br />
Hate is the worst four letter word in the world because it consumes souls and allows evil to reign and spread.<br />
<br />
We conquer hatred through loving acts and words, and through faith.<br />
<br />
God has Braden in His hands and I trust Him to care for him and that far surpasses hatred and evil.<br />
<br />
<span class="bqQuoteLink" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 20px; line-height: 26px;">"<a href="http://www.brainyquote.com/quotes/quotes/f/francisofa389169.html" style="text-decoration: none;" title="view quote">Lord, make me an instrument of thy peace. Where there is hatred, let me sow love.</a>"</span><br />
<div class="bq-aut" style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; font-weight: bold; line-height: 20px; margin-top: 6px;">
--<a href="http://www.brainyquote.com/quotes/authors/f/francis_of_assisi.html" style="text-decoration: none;" title="view author">Francis of Assisi</a></div>
<br />
Amen.<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com14tag:blogger.com,1999:blog-3263004498521194245.post-23305603090230682022014-04-07T13:06:00.002-05:002014-04-07T13:07:58.043-05:00Heroes and HOPE...On March 31, 2014, our ten year old son, Zachary, arrived at the Children's Hospital of Philadelphia at about 5:30 am.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIiQQD8Gv3s0dCfMRJSAxe-UFn7PtpJ9mZHLiRltCVIvIw_p4PWCD1mt6SaQ93Pef_WT2fZoPzSHHg8qDEn1fplsS9t7dNTwfArNW7cPFU-Lqa4iz4ZSnyItI8Mj4SpED1VMFH5eKTIjM/s3200/IMG_5565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIiQQD8Gv3s0dCfMRJSAxe-UFn7PtpJ9mZHLiRltCVIvIw_p4PWCD1mt6SaQ93Pef_WT2fZoPzSHHg8qDEn1fplsS9t7dNTwfArNW7cPFU-Lqa4iz4ZSnyItI8Mj4SpED1VMFH5eKTIjM/s3200/IMG_5565.jpg" height="300" width="400" /></a></div>
<br />
First, dad and Zach stopped by his little brother Braden's room in the bone marrow transplant unit. Braden and I were able to give them hugs, kisses, and tell Zach good luck.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAzZVCIGZJaNosh22hLYkALGUdHD4TYdvL5p2REo87EhNJqG64RTR1qR-M1JWY4KPI6ok2zF6wzl5q0kUQkDsT50fLFf0Ndn9aCKsM6ykj31iahs0DAFE3y5h9u7A3NfHhcFMgdvepzno/s3200/IMG_5566.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAzZVCIGZJaNosh22hLYkALGUdHD4TYdvL5p2REo87EhNJqG64RTR1qR-M1JWY4KPI6ok2zF6wzl5q0kUQkDsT50fLFf0Ndn9aCKsM6ykj31iahs0DAFE3y5h9u7A3NfHhcFMgdvepzno/s3200/IMG_5566.jpg" height="400" width="218" /></a>Zach and daddy walked down the hallway toward the surgical center.<br />
<br />
Zach was carrying more than his backpack filled with his blanket and i-pod touch.<br />
<br />
He also carried with him HOPE!<br />
<br />
Hope that his cells would carry the cure to a secondary leukemia that his little brother had been diagnosed with that was caused by the treatments to put him in a remission from his first two cancer battles with neuroblastoma.<br />
<br />
His odds of five year survival after his neuroblastoma relapsed were less than 10%. He was in year 3 of that battle and his neuroblastoma remained in remission.<br />
<br />
As horrific as those odds were, this new secondary leukemia was even worse. His teams in Philly and Kansas City had never seen a child beat this particular form of MDS after battling neuroblastoma.<br />
<br />
Ever.<br />
<br />
A bone marrow transplant was Braden's only HOPE for a cure, and an end to cancer forever. Braden's bone marrow would be killed off by high dose chemotherapy and then donor cells would be transfused into his body to try to replace his bone marrow with healthy cells that could take over and kill any remaining cells the chemo missed, and keep a vigilant watch in his body and destroy any future cancer invaders.<br />
<br />
After an exhausting search for a bone marrow donor, there was only one match. And that match was a <b>perfect</b> match.<br />
<br />
His ten year old brother, Zach.<br />
<br />
We talked to Zach about his donation and we were very honest with him about what could happen. When a stranger donates cells, they do not meet their match until one year post transplant.<br />
<br />
There is a very good reason.<br />
<br />
The odds are very high that the transplant won't work and it's really tough for donors to know that their cells failed to save the person's life.<br />
<br />
Zach is well aware of this. He knows that his cells may not save Braden but that his cells are the only chance Braden has to live.<br />
<br />
Without those cells, Braden would die.<br />
<br />
And that is a lot to deal with as a ten year old brother.<br />
<br />
Zach is very frightened of all things medical...especially needles. When he had his flu shot this year, it took several nurses and a long time. At one point he said, "Everybody just hold on for a minute! I need to breathe because I have a very big problem with large needles near my body"!<br />
<br />
Zach faced his fears of needles and procedures. He faced his fears about "what if" and he donated his cells during a 2.5 hour procedure in which the oncologist harvested about 837 ml of bone marrow cells from Zach's back/hip.<br />
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<br />
It took about 50-75 cores of bone drilled from his body to do that. It is very painful after the procedure but Zach was tough.<br />
<br />
After recover, Zach was able to come back to Braden's room and they were side by side while the cells were transfused into Braden's body. A hospital clergy said a prayer and blessed the cells as they went in and after Zach said,<br />
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<br />
"that prayer proved that I was chosen for this by God mom!"<br />
<br />
It takes a very special person to be chosen by God to try to save your brother's life. We don't know if it will work, but the most important thing is that Zach was willing to try.<br />
<br />
Selfless...<br />
<br />
loving...<br />
<br />
HOPEFUL.<br />
<br />
The night before the procedure, we named Zach's cells "Z-Force" because Zach is into all things military and his cells are like a Special Ops Battalion going into destroy the bad cells, take over, and keep watch for a lifetime and immediately destroy any insurgents. A pretty big job for any Special Ops unit...but Zach is special because his cells are super charged with LOVE and HOPE!<br />
<br />
As the cells were transfused into Braden's body, someone noticed that the tubes actually made a heart shape.<br />
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<br />
An unplanned sign.<br />
<br />
We expected Zach's cells to begin to engraft in Braden's body around 13-14 days after the transfusion. Today is day 7...<br />
<br />
and they are already starting to engraft.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRO95tmNIeQ8EjwGgsA5A6CaSfXnhpjFV04nu23p-gv0ih3s0j0U1LzddGE8VKQT-a5e8FVzaxtzSlE5yundIRx7fKUP5vG1zPqDgPhI3EBAwkbEaAUafDZSVro1YuFcrIUDccIwpYIug/s3200/IMG_5696.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRO95tmNIeQ8EjwGgsA5A6CaSfXnhpjFV04nu23p-gv0ih3s0j0U1LzddGE8VKQT-a5e8FVzaxtzSlE5yundIRx7fKUP5vG1zPqDgPhI3EBAwkbEaAUafDZSVro1YuFcrIUDccIwpYIug/s3200/IMG_5696.JPG" height="240" width="320" /></a>We still have a very long road ahead...they must engraft fully, remain engrafted, not cause extremely detrimental graft vs host disease, and keep the cancer away forever...<br />
<br />
a long road indeed...<br />
<br />
but it is possible...<br />
<br />
and we are hopeful...<br />
<br />
and I stand in awe of my two brave sons. <br />
<br />
One the donor, one the recipient...<br />
<br />
a <b>perfect</b> match.<br />
<br />
HOPE! For both of my heroes!<br />
<br />
<br />
<br />
<br />
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<br />Deliece Hofenhttp://www.blogger.com/profile/04672105300685267543noreply@blogger.com4