Paying it Forward: ONE YEAR ANNIVERSARY

The Do Better. Be Better. program began last December.  Patrick and I had just put the girls to bed and I was browsing through Facebook.  At the time, there were two young children in the area battling cancer.  I read their updates and was overcome with an intense desire to help.  I put my phone down, turned to Patrick and said, "I have an idea."  The rest is history.

In one year we have helped sixteen families, awarded two (soon to be four) scholarships, and organized and implemented numerous fundraisers.  Most importantly, we have spread a little bit of love, happiness, and hope amongst the community.  

We haven't done it on our own though.  There are so many people to thank (other than the obvious family and friends)...here's the running list:

Next Level Extreme Fitness, Ryan Downs and all of the wonderful trainers
Key West Tanning and Fitness, Heidi Dohlman and her amazing staff
Spread the Care Non-Profit, Alan Shakespeare and Lincoln Savings Bank
Cedar Falls Schools, Erin Gardner and the Student Senate
Dunkerton Schools, Justin Urbanek and the Leadership Team
Dunkerton Class of 1999
Craft Cochran
100+ Men Who Care: Cedar Valley Chapter ($10,000 donation)
EVERYONE who has participated in a fundraiser, nominated a family, and cheered us on!  THANK YOU!

I am proud of what we have accomplished.  I am excited for what is to come.  I am honored to be able to do all that Do Better. Be Better. entails.  Most importantly, I am humbled.  I have been given the opportunity to live with purpose and instill that in our children.  We are truly blessed.

This session (session 4) we were able to help eight families.  Six were helped from the funds from 100+ Men and two were helped through the blacklight gauntlet at NLXF.  Thanks to 100+ Men, we were also able to donate $2000 to the Dunkerton School and Cedar Falls Schools Do Better. Be Better. Scholarship fund. 

Please read below to learn about our families and why they needed our help!

JANE CARTER

Jane Carter was diagnosed with Stage IV Ovarian Cancer in February 2008. Even with the diagnosis she kept her positive outlook and upbeat personality. After surgery and chemo treatments the cancer was controlled to the point where she could discontinue treatments. After two years Jane had to once again start treatments as the cancer became aggressive again. Once again she kept her upbeat personality and did not make a big deal out of what she was going through. She would shrug it off as business as usual. Jane even scheduled her treatments so she could limit the time she missed from her job at the high school, along with her work at Scratch Cupcakery, and at the Cedar Falls Rec Center as a fitness instructor.

After her second round of treatments the cancer was controlled again. She would always speak highly of the “team” of doctors that she had in Iowa City along with all the help and support that she was receiving from family and friends. She would not complain about her situation nor would she let it slow her down. Even after being told by doctors that this pattern would continue for many years she kept that same positive attitude.

In 2015 her cancer had become aggressive again which would require more treatments. This time her chemo would have to change. This new chemo brought on more challenges and was not as successful at ridding the cancer from her body. On October 7th of 2015 she suffered a subarachnoid hemorrhage which caused massive bleeding around her brain. She was airlifted to Iowa City where she underwent multiple surgeries to relieve pressure from her brain and repair the damaged blood vessels.

After weeks of recovery she was able to go home. During those weeks Jane and her family found out that her aneurysm was of such a large size, there was a low survival rate and an even smaller chance of returning to “normal”. In normal Jane fashion, she was not going to let this be the case. Jane came through the surgeries and recovery time in a way in which the doctors told her she must have a lot of guardian angels looking out for her. Her positive attitude once again helped get her through another tough situation.

Jane has made a great recovery.   While she is still experiencing some difficulties caused by the aneurysm, she has been able to return back to full time work at all three jobs. There are still many more doctor visits and hurdle to clear, but Jane’s faith, family, and friends have helped her through these difficult times and will continue to help.

     

 
AMANDA BEARMAN

Amanda Bearman began having reoccurring sinus infections in the fall of 2013. Her doctors thought removing her tonsils would help; however, it did not. Doctors continued over the next several months to try to clear the infection in her sinuses with medication, but it was to no avail. In November 2014, Amanda began to have unexplained soreness in her throat and began to lose her voice. After further examination, she was diagnosed with Wegener’s Granulomatosis, which in an inflammation of the blood vessels. She continued treatment for Wegener’s throughout December; however, her symptoms were not improving and actually were getting worse. This led her doctors to believe they may have the wrong diagnosis. Amanda was eventually hospitalized in Rochester where more testing could be done. The doctors took biopsies and found that Amanda was suffering from MRSA and Extra nodular NK/T-Cell nasal type lymphoma. 
Amanda has been fighting her lymphoma every day since. She has had setbacks but continues to stay strong and fight for herself and her family.  On top of her own fight, this summer, Amanda’s Father-in-law developed Creutzfeldt –Jakob disease. This is a degenerative brain disease. He passed away one short month after becoming ill. Amanda and her husband Jim have two very active and beautiful boys, Wyatt who is 5 and Walker who is 2. Above all else, the separation from her boys has been torturous for her. She has felt the power of prayer through this past year and her strong faith and family and community support continue to lift her spirits.

You can follow Amanda's story on Facebook: Team Bearman- Givin' Cancer the Boot
   

BRIGGS BOCHMANN

Our son Briggs, was welcomed into this world on July 11, 2015 by emergency C-section.  He was then immediately flown to Iowa City while we traveled by ambulance.  His lungs were full of fluid and he had to be placed on a cooling pad for 72 hours and could not be held or stimulated for his first two of life.  He had suffered from a stroke, low oxygen levels, fluid on the brain (surgery for shunt), low hemoglobin, a heart murmur, and blood clot within his heart, hemorrhages in both of his eyes, seizures, and feeding problems leading to a feeding tube placed.  Briggs has undergone multiple surgeries, 5 blood transfusions and after 63 days spent in the NICU in Iowa City at the University of Iowa Children’s Hospital, was able to come home.  Briggs’ future and prognosis are still unknown. We continue to travel to Iowa City for follow up appointments. 

ANDREW MORLAN

Andrew Morlan's family: Ron (dad) Karen (mom) Lauren (sister 17) Abbie (sister 14) Isaac (twin 12). When Andrew was born we learned his kidneys weren't functioning properly due to a late Twin-to-Twin transfusion that transferred Andrew's blood to Isaac. After doing dialysis at home, 8 surgeries (including 2 eye surgeries) he had his kidney transplant. He was 14 pounds and 14 months old. He will forever be on medication that will suppress his immune system. Because of this, he isn't more likely to get sick but when he does get sick it will be more severe and last longer. 

Growth has been difficult. Three years ago he had his tonsils removed due to rapid growth. It was found that he had PTLD (post transplant lymphoproliferative disease), an infection of the lymph nodes that can evolve into non-hodgekins lymphoma. He had chemo treatments for this. The treatments were successful however antibodies developed during chemo attacking his kidney causing rejection. He went through a series of treatments and saved the kidney. Again, growth is still an issue so a GTube was placed so that we could supplement his nutrition at night with a feeding machine. 

Complicating his weight issues is a new disease called Eosinophilic Esophagitis, an immune system disease where we had to eliminate food from his diet. To help his growth we have added growth hormone shots to his bedtime routine. Due to a virus, Andrew recently spent 11 days in the hospital. His varied and complex medical history results in a lot of missed school, blood work, time separated from family and numerous trips to the doctor and hospital. We are so thankful for his care team - 7 different departments & he still loves going to the doctor! We don't have words to express our thanks for everything that everyone has done. Through it all God continues to show Himself faithful.

 
SHELLIE DOLAN

Shellie was diagnosed in 2008 with malignant melanoma. After surgical treatment she was declared cancer free. This last November Shellie began suffering from what she believed was a cold. After coughing up blood she decided it was time to seek medical advice and went to the emergency room. A chest x-ray and CAT scan revealed a lung mass. She was referred to Iowa City for further testing; they confirmed she had a rare type of lung cancer. Just before the New Year Shellie had her lower left lung removed. After a six week recovery and follow-up testing, Shellie and her family received the message that she was cancer free; however, she would need to have close routine monitoring. She was scheduled to return in 3 months. Long before her 3 month follow up Shellie began having severe back pain and went to the emergency room. While in the presence of family and friends, Shellie received the astounding news that her cancer was back. She was immediately transferred to Iowa City where more testing was done. Not only was the cancer back but it had spread. The cancer is now in her spine, leg, liver, adrenal glands, and diaphragm. At this time physicians feel that this is all part of her original melanoma and not another type of cancer like they thought in December. Shellie has begun radiation treatments and chemotherapy this week. Shellie is receiving all of her treatments at the University of Iowa.


Shellie graduated from Columbus in 1979. She and her husband Jeff have been married almost 35 years. They have twin daughters, Megan and Lauren age 21, and a son Russ, 30. Both of their girls live in Waterloo and with the help of their significant others, Cody and Reid, they have stepped up to help with the care of their brother. Russ has severe cerebral palsy and lives at home with his parents. Russ has care givers who help, but the majority of his 24 hour care has solely been the responsibility of Shellie and Jeff.


Shellie is employed by CenturyLink in Waterloo but has been unable to work full time since being diagnosed in November. CenturyLink is closing her local office this summer and Shellie will be out of job after 27 years of service.  


THE GULICK TWINS: LENNON AND LEYTON

On 10/15/15 Levi and I welcomed our beautiful twins into the world Lennon Mae and Leyton John. Born at just 26 weeks, Lennon weighed 1lb. 12oz. and Leyton weighed 2lb. 2oz. We never knew that we could love something so much, our hearts have never been so full! These two have already changed our lives in amazing ways!!! Levi and I CANNOT thank each of you enough for the calls, texts, messages, cards, flowers, care packages, visits, suppers, and most of all the prayers! Without the support of all the amazing people around us, this time in our lives would be even harder! Words will never thank you enough! Please keep the prayers coming for Lennon and Leyton that each day they get bigger, stronger, and healthier!

TROY GRAYBILL
 

Troy is a 59 year old husband, father, and grandfather, who is also a paraplegic of 23 years due to a motorcycle crash. He has a passion for hot rods, restoring old clocks and his grandchildren. Have you ever burned yourself? Who hasn't, right? Troy’s journey started that way.  Who would've thought that what came next would so drastically change the rest of his life.  

Being a person who is paralyzed, Troy has no feeling in his lower body. So on January 23, 2015, he burned himself trying to relieve back pain with a heating pad. This caused a wound so severe that it covers one whole cheek of his butt. From there, he was hospitalized to treat the wound. He went into septic shock and also suffered a massive heart attack. After 6 weeks of IV daily antibiotics, he was finally well enough to have heart stents placed to help with his damaged heart at The Mayo Clinic. 

From there, he has been in the hospital with 5 major infections and is totally bed ridden. He also needs a very lengthy and complicated flap surgery in order to repair the wound. He CANNOT currently have this surgery because he is still too medically unstable. With all of the infections, he has lost weight, his internal organs are not functioning at 100% capacity, and his mental health is also suffering. Troy’s wife, Debbie, lost her job in March which was a devastating blow to lose the sole source of income; however this has allowed her to be a full-time caretaker for Troy. 

At this point, they have a limited income (Troy’s social security/disability) yet increased expenses with additional medical costs. In the midst of financial and medical hardship they have kept their head up and handled it with dignity and grace, constantly look at their blessings in life. Troy and Debbie are great people who have fallen on very hard times, yet remain positive and look forward to Troy receiving word from Mayo that he can have the wound surgery which will, in time, allow him to return to an active lifestyle.


REED CROSBY HAVLIK
 
Reed’s story begins on December 3, 2012, a normal pregnancy, a normal birth, a normal baby, a normal toddler, and then, on November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. He was falling a lot and whining, not crying, but frustrated. The family continued to watch him struggle and noticed his right foot turning in. After no clear answers as to why this was happening, Jesse, Erika and Reed headed for Iowa City to see a neurologist.

On February 25, 2015, Reed was diagnosed with Leukodystrophy.  Leukodystrophy is a group of disorders characterized by degeneration of the white matter in the brain. The leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin in the central nervous system (CNS) is produced by oligodendrocytes. When damage occurs to white matter, immune responses can lead to inflammation in the CNS, along with loss of myelin which impairs brain function, sight, and motion. Please share and help this amazing family.

Stay up to date with Reed at www.teamreedcrosby.blogspot.com  

Facebook- Team Reed

If you in your heart you desire to help even in the tiniest way you can go to: http://www.gofundme.com/osm9qk#

Please consider donating to Leukodystrophy research
 https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik

Two Year Anniversary

FEAR.

I wake startled and disorientated, much like after having a nightmare.  Instantly, I sense that something is very wrong.  An intense pressure fills my head and its weight is so insurmountable that I am not sure if I can muster the strength to lift it.  My left arm and leg, equally as heavy as my head, have a tingling sensation coursing through them.  I panic as I realize that my face from the nose down is also tingling.  Instinctively, I open my eyes and immediately regret my decision.  It seems as though the room is spinning.  I cannot keep my eyes open long enough to determine if the objects in the room are moving or if I see numerous images of each object.  The baby, I think as my hand reacts to my thought and settles on my stomach.  It's so early.......I quickly push the thought away as I am too scared to even think about it.

In effort to distract myself, I try to maneuver myself in bed to grab my phone and check the time.  I reach once and fail.  I shift a bit further in bed figuring that I have just missed it and try once more.  I still miss.  The third time I open my eyes.  I quickly realize that I haven't been missing, but rather my left hand is physically unable to feel or grasp my phone.  I look at my hand; it looks like my hand, but it feels foreign and disconnected.  Something is severely wrong.

Patrick.  I need Patrick.

"Patrick." I say loud enough for him to hear me from the living room, but soft enough to hide the panic I feel.  "Yeah," he says as he walks around the corner.  "Something is wrong.  We need to go to the emergency room," I say flatly.  "My left side is tingling, the room is spinning, and I can't pick up my phone."  Patrick begins to move with urgency.  He quickly carries Seeri to the van and packs for the trip to the hospital.  I remain in the bed, stranded and helpless.  Violent nausea consumes me if I try to move or open my eyes.

Patrick returns shortly after with my shoes.  I feel my leg being lifted, but I cannot feel the touch of his hand.  Instead, it feels as if a ball of small nails are being rolled along my leg.  "Is my shoe on?" I ask, dreading the answer.  "Yes," he says softly.  I hear the fear in his voice.

CHOICE.

My mom kisses my forehead.  I hear her breath catch as she tries to fight back her emotion.  My dad goes next, silent and stoic, just like on my wedding day.  As they leave, they both tell me they love me and to rest.  I can sense that there is so much more that they want to say, but can’t.  My nausea has finally subsided, but I still can’t move or open my eyes.  I know there is something seriously wrong with both my vision and my left side at this point.  I can’t even feel the blood pressure cuff tighten around my left arm.   

At this point, I have no idea what caused my stroke.  I have listened to doctor after doctor come in and tell my family members about my bleak prognosis all while I lay in my hospital bed, eyes closed, and unable to even roll over on my own.   How can I possibly comfort them?

“I’m going to be okay,” I blurt out.  “I am strong and I am a fighter.”  

This will NOT be my life.  I WILL fight.  

HOPE.

I sit at the edge of the bed.  I take pride in that.  The steady growth of my belly from my pregnancy in combination with the deficits from my stroke makes every movement labor intensive, mentally challenging, and uncoordinated.   The last two and a half weeks have taught me more about myself than anything I have ever experienced.  My faith, mental strength, courage, and positivity have all been challenged.

My PT asks me to stand; an act that becomes a bit easier every day.  He secures the gait belt around my waist as Patrick, him, and I exchange pleasantries.  His final tug gives me the cue to start walking to the physical therapy gym.  This too is becoming easier every day.  My sensation is starting to return a bit and all of the exercises we have done have helped me regain some of my balance.  As usual, Patrick and my PT talk all the way to the gym as I focus quietly on the task at hand.  The nurses, doctors, and therapists all greet me with happy hellos and big smiles.  This is not anything new, but I see their eyes linger a little longer than usual.

Could it be?  Am I really feeling what I think they are seeing?  I don't think my PT is holding on.  Am I really walking on my own?

We arrive at the gym and I walk to the bench.  I turn in a 180, back up until I feel the back of my legs touch the bench, and slowly sit.  I look up to the glowing faces of Patrick and my PT.  Instantly, I know.  I did it.  I walked on my own.

BLESSED.

My eyes are closed.  I think only of taking deep, slow breaths to regulate my heart rate and blood pressure.  And I pray.  I pray fervently.  I feel the warmth of Patrick's hand and hear the hustle and bustle of the operating room.

Then I hear her.  

Her beautiful cry fills the room and tears immediately fall from my eyes.  Patrick squeezes my hand, kisses my forehead, and whispers, "She’s here.  You did it."

PURPOSE.

I feel her shoulders shake softly and her voice quiver as she whispers thank you after thank you to me.  She pulls away, holds my hand, and begins to say a prayer over me.  I struggle to hold my composure.  Every piece of me knows in this moment that this was God's plan for me.  Finally, I surrender and let the tears escape from my eyes.

******************************************************************************

I wrote the above on October 7, 2015.  It is now October 8, 2015.  It is a beautiful day; it is Jaelyn and my mom’s birthdays.  This is also the anniversary of the day that my friend’s son was diagnosed with cancer.  And as of an hour ago, it is now the day where I found out that my dear friend had a brain aneurysm and will be undergoing surgery this afternoon. 

Life can change in an instant.  I have lived it.  And when you have experienced something like that, the memories, the feelings, and most of all, the fear that it could all happen again is ALWAYS with you.  

Hearing the news this morning took me to a place I hadn’t visited in a while.  My heart broke when I heard; I was speechless, I was numb.  This woman is one of the people that would send me the kindest, most beautiful messages nearly every day after my stroke.  She is, without a doubt, the kindest soul I have ever met.  She has been through so much and still remains faithful, positive, and kind.  She is my hero.

I cannot take my mind off of her.  I am desperately worried about her well-being.  But, I have the curse of being able to visualize her there.  I have met the same neurosurgeons and had the scary conversations.  The same ICU nurses cared for me and I remember the exact layout of the ICU bay and individual rooms.  EVERY memory from the first week of my stroke came flooding back and it is extremely overwhelming.  Even after two years, those memories are as clear as if it happened yesterday. 

And those memories brought back to me the FEAR that it could all happen to me again.  That fear is always with me.  

My first thought every morning is, Is today the day?  Is today the day I have another stroke? I panic every time I get a headache or feel sluggish.  Am I experiencing symptoms?  Whenever I exercise, Listen to your body, plays on repeat in my mind.  

It can be exhausting.  I have to make a conscious CHOICE every day to live.  This is not to be confused with life as in living or dying.  I have to choose to enjoy life, be present, realize my blessings; I choose to live.  I have slowly learned to allow myself to listen and acknowledge my fears rather than let them rule me for an entire day for fear, worry, and self-pity only take away the precious energy I need to live.  I have also learned it’s all about perspective.  It was not fun to suffer the initial pain of a stroke, relearn how to walk, balance, and move my hand, retrain my eyes to blink and move, or be pregnant through the entire process.  But, it could have been much worse.  Through it all, I still had so much that so many others do not.  I was incredibly grateful for that.   

Yes, God has truly BLESSED me.  I have recovered well, Myah is healthy, and we are finally starting to settle back in to being us.  Not only that, I finally feel like myself.  My slight lack of functioning and strength in my left hand and leg are my new normal.  And I finally took the plunge and had eye muscle surgery in April.  I will never forget the pure joy and relief that I felt when I opened my eyes and only saw one image for the first time in 16 months.  My vision was restored, but the surgery also took away the one visual tell-tale that I had suffered a stroke.  I now can look in the mirror without seeing the constant reminder of my stroke and I am not self-conscious when I meet new people. That alone has been a game changer for me in the recent months.  

I have not recovered by myself, though.   My family, my friends, my co-workers, my fellow gym rats, MY ARMY, all have motivated me along the way.  The amount of love, friendship, and support that we have received from others over the last two years has truly changed our lives.  YOU all gave me the powerful gift of HOPE when I needed it the most.  Your kindness helped me to believe in myself.  Your compassion inspired me to do more.  Your generosity helps me give HOPE to others who need it.  

YOU have all helped me find my PURPOSE.  YOU have all helped me make my stroke matter.  I cannot adequately explain in words the enormity of that gift.  

Every 10 weeks I have the honor of organizing and implementing numerous fundraisers to help families suffering from medical emergencies and the Do Better. Be Better. Scholarship program.  Since January we have gifted 12 families $1000 each and given two $400 scholarships (they will be $800 this year!).  We are currently hoping to help 2-4 more families this session with our efforts.  And as of last Thursday, Do Better. Be Better. received $10,000 from the 100+ Men Who Care: Cedar Valley Chapter to be used to help others (blog post on that to follow!).  I CANNOT WAIT to finish the year helping so many families!   

Every fundraiser is a lot of work and tons of fun.  I leave with renewed inspiration and a full heart every time.  Even better, they remind me of how Do Better. Be Better. came to be. 

I still remember laying in my ICU bed on that first Friday night.  I was alone, as everyone wanted me to sleep.  How could I sleep?  The constant visits from the nurses and the numerous teams of doctors had completely overwhelmed me.  Plus, I was trying my best to be strong and present in all the conversations I had with all my family members.  And all the messages Patrick had read me throughout the day had left me paralyzed with gratitude.  I needed to say thank you; people needed to know how much I appreciated them and everything they were doing for us.  

So, I grabbed my iPad with my right hand.  I quickly realized I wasn’t going any further than that when I opened my eyes to type and saw more than one iPad.  I called for my brother to come in because I knew that he would be the most strong.  He sat next to me as I recited what I wanted him to write.  I will never forget the first paragraph.

I wanted to say thank you to all my family and friends. Your generosity and kindness has overwhelmed me. I have been praying that God saves a special place for all of you in His kingdom. You have motivated me to do better and be better. I am starting today. I love you all. I love you all from the bottom of my heart.

I still feel that exact same way.  I pray for you all daily.  Your generosity and kindness still motivate me every day to be a better version of myself.  I love you all; I love you for believing in me, for inspiring me, and for supporting Do Better. Be Better. and all that it involves.  You have given me the opportunity to make my stroke matter, not only for myself, but for my children.  You have helped me create something that I hope they will be proud of me for and that they can be an integral part of the rest of their lives.  I will do everything I can to repay your for that amazing gift.

So, I leave you with this.  A month ago, I was awarded the Rehabilitant of the Year award from Covenant Rehabilitation Center.  It was the first time that I had been back there since I finished outpatient therapy in January of 2014.  Wow, did the memories come flooding back!  It was so great to see all the therapists, nurses, and doctors.  It was wonderful to introduce them all to Myah, too.  As we were leaving, the front desk nurse pointed out a flower to me and explained to me that it was ours.  It took a second for me to remember that we had left a few of our flowers behind for the staff because we couldn’t fit them all in our car when we left.   This flower was just a little guy when we left it.  The doctors and nurses have cared for it for the last two years and now it looks like this.  I feel like it is the perfect symbol to represent both my journey the last two years and how amazing the staff is at Covenant Rehabilitation; they amount of love and care they give ANYTHING is truly remarkable.  

And finally, this is a video of Myah leaving Covenant Rehab that day.  She was a part of me the last time she walked out of those doors.  As I took it, I had a flashback of the day I left; walking out on my own, uncertain of what was going to happen next. 

  


To see her walk out of there that day took my breath away and showed me once again that

MIRACLES DO HAPPEN.

LIFE IS FULL OF CHOICES.

YOU CAN WRITE YOUR OWN STORY.  WRITE IT WITH PURPOSE.



Special thanks to all who are involved with making Do Better. Be Better. work behind the scenes:

My husband, Patrick Smith

Next Level Extreme Fitness: Ryan Downs, Creed Harkless, Matt Just, Luke Schuver, Danielle Carlson, Sarah Alborn, Allison Mitchell, Jordan Young, Nikki Carney, Natasha Hadacek, and Stacy Doughan, Mary Jo Vrba

Key West Tanning and Fitness Owners and Staff, especially Heidi Dohlman

Spread The Care non-profit and Lincoln Savings Bank, especially Alan Shakespeare 

Cedar Falls High School and Student Senate, especially Erin Gardner

Dunkerton High School and Leadership Group, especially Justin Urbanek

Dunkerton Class of 1999, especially Kelli Snyder

Sara Fitzgerald, Do Better. Be Better. graphic design liaison

Craft Cochran Screen Printing, especially Keith Sandvold 

100+ Men Who Care: Cedar Valley Chapter
  

Newspaper Articles

Rehabilitant of the Year Award

Do Better. Be Better. Color Dash

Our Family after the Rehibilitant of the Year awards ceremony.

Katie Jo Funk (my OT) with Myah and I.

 

The flower that we left the nurses and doctors after we left Covenant Rehabilitation.   Wow, has it grown!

Paying it Forward: Session 3

The third session of the 'Do Better. Be Better.' was once again a HUGE success.  The fundraisers this session were: week one returner's only gauntlet (CF only), a Buffalo Wild Wings night, a Chuck E. Cheese night, a golf benefit, and a sweaty t-shirt theme day.  We were able to raise $4000!  Better yet, we helped THREE families in need and donated $800 to the Dunkerton Do Better. Be Better. Scholarship fund!!!! Thank you to all of you for making these events so incredibly successful.  They would not be possible without the generosity of all of you.

The stories below briefly highlight those who we all helped.  Each family wanted to make sure that I extended their deepest appreciation, love, and gratefulness to all of you.  Yes, the monetary donation to them was incredibly helpful.   But, all of them were quick to say that the thoughtfulness and kindness behind it was even more powerful and truly overwhelming.  All of the families were inspired to pay it forward and are hopeful that they will someday help us in our efforts to help others.

Angela Gamerdinger

At my yearly exam June 3, 2014, my doctor found a lump in my left breast.  I was sent directly to mammography, then directly to radiology for an ultrasound, and then back for another mammogram.  I sensed through all of this that I was a breast cancer patient now.  The doctor told me I had cancer before I even had a biopsy.  I suddenly felt doomed.  The doctor told me I had a 4.7 centimeter cancerous tumor and I would have to undergo chemo and radiation.
 
I don't remember the drive home.  Ten days later I had a left breast mastectomy.  I want both breasts removed, but due to a bleeding disorder called, Von Wilbrands disease, I was only able to have one removed.  I was then sent to the Cancer Treatment Center where I was told I would have 16 chemo treatments from July to December.  This was a very arduous journey.  I did become so sick with these treatments that I had to take a leave of absence from work.  Maintenance chemo began in January and lasted most of 2015.  This chemo was not as harsh, thank God.  In January, I also started 33 radiation treatments.  

This has been a long journey that is coming close to completion. The good Lord, family, friends, and perfect strangers have played a huge part in my journey which I so greatly appreciate!!!  The doctors will never tell me it's gone, but I try to live my life like it is gone. Thanks to all of you for being part of my journey as I continue to battle this horrible disease.

Tiana Williams (written by her mother, Dawn Laws)

Tiana began to walk at 11 months old and from the moment she walked I knew there was something not right.  Tiana's legs were bowed more than I thought was normal.  She is my 3rd child, so I didn't feel like I had new mom paranoia.  I expressed my concern to her pediatrician on every doctor visit and check-up.  Finally at her 18-month check-up, she was referred to an orthopedic surgeon at the University of Iowa Hospital.  At her appointment, there was a visual exam and x-rays. Her doctor said that 99% of children with bow legs correct on their own. When he returned, he told me she was not going to correct on her own and would only get worse and would cause crippling without surgical correction.  Tiana was diagnosed with a rare bone condition, Blount's disease, on August 20, 2014.  This occurs in less than 1% of bow legged children.  There is little information available about the disease and it is listed as a rare disease.  I was numb to the situation. 

I was given two different options of surgery plans.  The first option was a bilateral osteotomy on her tibias. With this they would cut and straighten both legs and cast them for 6 weeks.  The second option was a new procedure called 8-plate surgery.  This is minimally invasive where they would put plates in her legs to make room for her growth plates and stop growth on one side of her tibia to let the other side of her bone catch up and straighten her legs.  I decided to to go with the 8-plate surgery suggested by her ortho surgeon and trust in him and his team of doctors that this would correct her.  She had the the 8-plate surgery done on September 23, 2014 in Iowa City.  She did stay over night after the procedure and she was up trying to walk a couple days after surgery.  There were no restrictions.  

Since then, we have had numerous visits to Iowa City with close monitoring or her growth pattern. She also is in chronic pain and was fitted for a KAFO brace to wear on her left leg to support it because the left is the worse.  Unfortunately, her first surgery was medically determined a failure June 29, 2015.  The measurement of the left leg was worse than suspected and the right measurement was slightly improved, but not enough to continue with the plates.  She's young, so we didn't want to waste time.  On July 7th, she had a second surgery to try to straighten her legs and her casts were removed on August 21.  From the moment the casts came off, I again felt that there was something not right with her left leg.  

She recently had her follow-up appointment and I was assured her bones aren't broken (as I thought after I saw her X-rays) and will straighten out on their own.  Her orthopedic surgeon will be retiring in November and we will see her one more time.  Currently, I'm seeking a second opinion at the Mayo Clinic. This is not fixable over night, so we take it one step at a time. I hate that my baby is going through all this, but is necessary for her to live a productive life.   I just hate to think that Tiana may have to have more surgeries in the future. I know her left leg was more severe, that it still isn't straight, and that it will need time to heal.  But, my motherly instincts haven't failed me yet and I feel like our journey isn't over.

Tiana is a very strong-will, determined little girl!  I love her so much and want nothing but the best for her.  She endures chronic pain and it breaks me down to see her suffer. She wants to keep up with kids her age, but can't.  She currently doesn't like to bear any weight on her left leg and scoots on her bottom to get where she needs to be.  She has a wheel chair that she uses at daycare, but doesn't really like to be in there.  For the moment, though, we wait for the final outcome of this surgery and wait for the next step.  

To learn more about Tiana and follow updates on her condition, please join the Facebook group page, 'Tiana's little legs, a journey with blount's disease.'

Gabriel James and Nora Melissa Ackerson 

Gabriel and Nora were born at 23 weeks on December 13, 2014 in Cedar Rapids, Iowa. The children were born at St. Luke's Hospital weighing less than 2 pounds each because of premature labor caused by an infection. Gabriel has been at St. Luke's since his delivery and Nora has split time between St. Luke's and the University of Iowa Hospitals and Clinics.

Nora suffers from hydrocephalus, which is an accumulation of fluid build up on her brain. She currently has a reservoir in place that allows the excess to collect into an area on her forehead that requires a doctor to withdraw three timesa week. The only current treatment available in Iowa is to have a shunt inserted with a tube that runs from her brain into her abdomen where the fluid is absorbed into her body. Once a shunt is installed, it possiblyneeds to be replaced at least every 10 years. This means, Nora would have to undergo at least 8 more replacement surgeries in her lifetime. Shunts also can have negative effects on equilibrium, cause difficulties with flying and potentially keep her from athletic activities for the rest of her life. 

Please visit http://ackersonstrong.com/ to learn more about Gabriel and Nora.  



Our next fundraiser is the Do Better. Be Better. Color Run on Saturday, October 3 at 9 am at Pfeiffer Park in Cedar Falls.  It costs $20 to participate and a t-shirt is included.  All proceeds will be divided evenly between the Do Better. Be Better. Scholarship fund and families in need.  Please use this link to sign up online: https://secure.getmeregistered.com/get_information.php?event_id=122459

Paying it Forward: Session 2

The second session of the 'Do Better. Be Better.' events were once again a HUGE success.  There were three fundraisers this session: week one returner's only gauntlet, a co-ed dodgeball tournament,  and a blacklight gauntlet at each location.  We were able to raise $5500!  Better yet, we helped FIVE families in need!!!! Thank you to all of you for making these events so incredibly successful.  They would not be possible without the generosity of all of you.

The stories below briefly highlight those who we all helped.  Gifting the money to these families was an experience I will never forget.  They all wanted to make sure that I extended their deepest appreciation, love, and gratefulness to all of you.  Yes, the monetary donation to them was incredibly helpful.   But, all of them were quick to say that the thoughtfulness and kindness behind it was even more powerful and truly overwhelming.  All of the families were inspired to pay it forward and are hopeful that they will someday help us in our efforts to help others.

Seth and Jessica Lorenz

I received the nomination to help Seth and Jessica on June 1.  Unfortunately, Jessica passed way the next day.  This family has been through SO much and I feel absolutely honored that we were all able to help them.  In Seth's own words, "The funds will help our family to pay for the medical bills and other bills that we occurred during the caring process of such a beautiful soul."

Below, is Jessica's story.  She also kept a detailed blog (www.turnonthelightdotcom.wordpress.com).  I encourage you to visit it.  From speaking to Seth and reading the nomination submitted, I think Seth and Jessica were two people that embodied what Do Better. Be Better. truly means.  

Jessica was diagnosed with mucinous carcinoma of the appendix in October 2014.  It is very rare; only 600 to 1000 Americans are diagnosed with it each year.  It is even more rare for a 31-year-old, as most who are diagnosed are in their 50's.  Jessica underwent chemotherapy treatments in Iowa City and evaluations in Omaha.  She had a 16-hour dubulking surgery on April 1, 2015 to remove all of the cancerous organs and tumors that had spread throughout her abdomen.  She also had HIPEC, from which recovery from both of these procedures was very long and difficult.  Jessica spent 5 days in ICU and another 5 days in another section of the hospital.  They were released from the hospital but were to remain in the Omaha area for another 2 ½ weeks in case of complications.  They eventually came home for a few days at the end of the month in April.  But shortly after that, complications began and Jessica’s began to have fluid filling her lung cavity and had developed an infection.  She was hospitalized for about a week locally before she was transported by ambulance back to Omaha to be under the care of Dr. Jason Foster.  In Omaha, Jessica continued to have more and more complications.  She had two chest tubes attempting to drain the fluid entering the lung cavities and a nephrostomy tube to help drain her kidney.  Jessica then entered renal failure from the cancer progression and was placed on a ventilator due to the trouble with her breathing.   

On June 2, 2015 Jessica Leslie Lorenz was released from her worldly body. She is survived by a loving husband Seth S. Lorenz and three children, Mackenzie 13, Carter 10 and Greyson 21 months.  

Scott and Alicia Hyde

Scott was diagnosed with Hemolytic Uremic Syndrome at the age of 1.  When Scott was 10, he received his first kidney transplant with a donation from his mother.  In 2000, his kidney failed and he was placed on dialysis.  The kidney failure was discovered days after his brothers kidney transplant; he was diagnosed with the same disease at the same time as Scott.  While on dialysis, Scott endured many hospital admits, infections, and surgeries.  In March and September 2010, Scott suffered with endocarditis.  The episode in September led to open heart surgery and a mechanical heart valve.  Scott needed to go on disability a year later as working full time (40+hrs/wk) and dialysis, 3 days week 5 hours at a time, had taken its toll after 11yrs.  We continued with surgeries, infections, and admits.  In 2013, Scott received a kidney from his aunt, but it never worked.  The doctors to this day have never seen anything like it and have no explanation.  We continue with dialysis, surgeries, hospital admits and infections.  Scott also suffered a stroke, has partial blindness in his left eye, and suffers from migraines.  We are currently working on getting him placed on the transplant list again for a third kidney. In the words of Alicia, "We keep our heads up, stay positive, and move forward.  It is what it is and somebody has always got it worse."

Chelsy King and Family

Last April 15, 2014 at 19 weeks pregnant, we found out we were having a boy and that he has Spina bifida.  It was the worse day of our lives!  The next day we were introduced to Dr Mansagar, who told us about a procedure available at Vanderbilt University in Nashville.  At Vanderbilt, they perform inter uterine surgery to repair the opening in the spine.  We went to Nashville and Sutter and I had surgery.  He weighed 1lb. 15oz. during this first surgery.  Surgery went awesome and I managed to keep carrying him until 36 weeks.  When he was born, there was a little spinal fluid leaking so they operated again when he was 3 days old.  He only stayed in the NICU for a week and we were sent home and life was "normal" again!!   They continued to monitor fluid in his head and spinal cord but all was going well for a while.


On February 18, 2015, our 11-year-old woke us up saying there was a fire.  Our kids lost everything but luckily we were all safe.  Thanks to all the amazing people in our life, we were able to keep life semi-normal for our kids and made it through that fiasco!   During the midst of construction, Sutter had his 9-month MRI and they found fluid on his spinal cord.  On May 19, he had his third surgery and they put in a shunt.  He is doing well since then, but we go back to the surgeon in July to discuss another lower back surgery.

Franco Troiano

 This was submitted by Gio, Franco's brother, and is written from his perspective.

Franco is a 22 year old, soon to be 23 year old, kid. I say kid because that's how I've always seen my, birdmaning every workout, little brother.   He's always making me laugh and I find myself enjoying life more when he's around.  

This past February we received devastating news that he has cancer.  The full diagnosis is Stage 3/Pre-stage 4 Hodgkins lymphoma.  The lymph nodes in his stomach and neck are infected along with areas along his spleen and spine.  He's been fighting this monster hard and will be until late September/October.  I mean he's a boss. The dude won NLXF in his second session. Fighting, he does well. 

He has chemotherapy treatments every Friday (great way to start the weekend right?).  We've had a few scares here and there, but my brother is a champ when it comes to perseverance.  He must have gotten that from watching me all these years!  We started a GoFundMe account and the wonder family that is Next Level (holla!) have helped us out in so many ways.  All the money raised for my brother has been going to pay his medical expenses as they rapidly pile up.  

He had his midway PET scan, and results were promising. There was some shrinkage in his lymph nodes in his abdomen. Come this September/October, we'll have a re-evaluation and determine what to do next for his treatments, if any. Despite all this, Franco has remained very positive and is still making us laugh. 

We are greatly thankful and humbled by all the kind words and things everyone has done for us and we really can't say thank you enough.  There aren't words for the gratitude we have for you all. On a side note, I had to promise not to slander Franco while writing this, so if you see him, could you do me a solid and let him know big brother had nothing but good to say, that would be great!

 

The Bartlett Family

I did not want to bother that Bartlett Family during this difficult time.  If you would like to read about their story, you can visit Orchard Hill Church's website:

Bartlett Family Update