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   

Eye Muscle Surgery

On April 7, 2015 I had eye muscle (strabismus) surgery to correct the double vision that still remained from my stroke.  The date was less than ideal because it was Myah's first birthday.   However, we were hoping that all of Myah's birth 7's would bring us good luck.

They did.  My surgery was a success!

Let me back up first, though.  Patrick and I left for Iowa City at 1 pm to get to my pre-op appointment at 2:45.  My doctors rechecked all of my measurements to make sure they were all still stable and talked to us further about the specifics of the surgery.  By specifics, I mean arrival time, when I had to stop eating for the night, etc.  I still to this day have no idea what they actually did to my eyes.  All I do know is that they worked on one muscle on the inner corner of each of my eyes.  I don't want to know because I don't think I would have been able to go through with it if I did.  If I ever need brain surgery someday, I will do the exact same thing.  You can't be scared of what you don't know.  I was frightened enough by the little I already knew.

After the appointment, Patrick and I did some shopping, went to our nephews baseball scrimmage, and went out to eat.  Once we got to the hotel and settled in, I became nervous.  The busyness of the day was gone and I was left to my thoughts.  So, in true fashion, I made myself busy.  I created a 'Do Better. Be Better.' Facebook page and organized some things for Adopt-A-Family.  I finally fell asleep at 11 pm only to wake up at 5 am wide awake.  I decided to write my first Facebook post to the Do Better. Be Better. page to clear my mind and it actually worked.

I was also bombarded by Facebook posts, messages, and snapchats of people wishing me luck and wishing Myah a happy birthday.  The love I felt from those and the busyness that reading them provided made the morning go by very quickly.  Minus the fact that I was absolutely starving!

We arrived at the hospital at 8:30 am.  We only sat in the waiting room for about 3 minutes before we were called back to the outpatient room.  The time before my surgery was spent getting dressed, getting an IV, and meeting with the anesthesiologists and surgeon.  My mom, sister, and brother-in-law were there too. Everything was going fine until we spoke with the first anesthesiologist assistant.  She gave us a rundown of what was going to happen and when she finished, we asked a few questions.  She had NO clue about anything that was in my health history.  It was so bad that Patrick actually stopped her and jokingly asked her if she was drunk.  Needless to say, it was a little unnerving.  The only part of my surgery that we were worried about was being put under general anesthesia and the anesthesiologists didn't know my health history....my rather MAJOR health history at that???  Shortly after she left, the main anesthesiologist came in and calmed our fears.  He was hopeful that since my blood pressure was used to fluctuating from exercise that being put under would be a minor stress to my body.

The anesthesiologist came and got me fifteen minutes after my scheduled surgery time.  My brother-in-law had left for the waiting room a little before that so he had already wished me good luck.  I hugged my sister first, who like my brother, is always strong in these instances, so I was able to hold back my emotions.  Next, was my mom's turn.  Like my sister, she said good luck and I love you.  But also choked out, "everything is going to be okay."  I could tell she was trying to hold back many different emotions which in turn made me emotional.  By the time I hugged Patrick, I was trying really hard to hold back tears.  He gave me a very tight squeeze and nuzzled his head in to my shoulder as I nuzzled my head in to his chest.  He said, I love you and I responded with the same.  I could barely get it out.  In that moment, there were so many things I wanted to say to all of them; if this happens, remember this, tell the girls this...but I couldn't.  I didn't want to believe that anything could happen.  If I were to act like it, then something bad actually could happen.  I didn't want to put it out there in to the universe to be known.  So, instead I said nothing and prayed that they all just knew.  In retrospect, I am still not sure if that was the right decision.  What if something would have happened?

Nice hair net!

I know that this all sounds a big dramatic considering I was having a routine surgery.  I would have never been scared before.  But, I know what kind of evil is living in my brainstem and it could literally burst at anytime.  It could burst in my sleep when I am completely relaxed.  Imagine how much more a risk it is for my CM when it is stressed.   I realize that I go on with my normal day; I work, I exercise, I go 100 miles a minute, but it is different to be medically induced to sleep.  At least when I am awake, I can tell someone if I need help.  I can feel the symptoms happening and give people a warning.  When I am sleeping I can't.  Yes, I was hooked up to a million machines that were monitoring my blood pressure and heart rate.  But still, it is the simple fact that I couldn't speak for myself or feel that was the most frightening.  If something had happened, I would have never known.  I wouldn't have been able to prepare myself for the fight....I would have just woke up to it.   

I actually walked back to the operating room.  The anesthesiologist had me lay down on a table that was barely wider than I was.  He then told me that he would give me some medicine to calm down and I would be out very soon.  The gas mask was placed on my face right after I laid down.  I told them my name and birth date when asked, took three deep breaths, and was out!

Immediately after surgery. 

I woke up to a nurse saying, "Jamie, my name is Greg.  It is time to wake up now."  My first thought, "No!  That was the best sleep I have had in a long time!"  The next thing I knew I was back in the original room, my left eye bandaged, covered in blankets, and surrounded by my family.  Apparently, I made a lot of comments about having a great rest, being GSD in my dreams, and adamantly stating that I wasn't loopy.   My family also told me that I actually got myself off of the bed they rolled me in on and sat down in the chair all on my own.  I do not remember that at all!  I remember all of this; however, I must have sounded much crazier than what I personally thought I did. 

Shortly after that the surgeon and two of his assistants came in.  They were there to check and see if the surgery had been successful or if they would need to adjust my eyes further.  They told me that I would need to open my eyes and let them know if I saw one or two images.  Naturally, I opened my eyes to try.  HOLY SHIT.  The pain.  It literally felt like I had a million shards of glass stuck in both of my eyes.  The second I opened them tears ran down my face.  I remember thinking, "I cannot even open my eyes, nor can I see anything through all the tears when I do.  How am I going to tell them if was successful or not?"  Thankfully, the had numbing drops to put in my eyes.  I LOVE NUMBING DROPS!!  If only I could have taken them home with me!

After the eye test.  Swollen and painful eyes!

Once my eyes were free of pain, they had me focus on the restroom sign out in the hallway.  When they asked me how many images I saw, I joyfully responded, "I see one.  I see one. (insert pause)  I only see one."  I was in complete disbelief.  After nearly 18 months I could finally see one image!  The doctors and my family expressed their delight and then I said, "If I could feel my eyes, I would be crying right now."  To which my mom responded, "We are all crying for you."  Up to that point, I was so consumed with what I could see that I didn't hear the sniffles coming from Patrick, my mom, sister, and brother-in-law.  At that point, Patrick and my mom both stood up and kissed me on my forehead.

After I confirmed that I could see one image, my family had to step out so they could tie off my stitches.  The doctors numbed my eyes a bit further and then surrounded my head.  One doctor had two utensils that resembled crochet hooks and used them to grab what looked like strings.  Keep in mind that my eyes were open watching all of this.  I felt nothing; not even a pull.  But, I watched her manipulate the strings with her utensil and then cut them off.  When I was originally told about this step, I was terrified.  I assumed that it would be painful and gruesome and it was neither.  Actually, it was quite fascinating.

Throughout the surgery, Patrick had been in contact with our family and closet friends.  It was very entertaining to read back through that message chain once I could open my eyes long enough.  I had many heartwarming messages that day, but my favorite was from my friend, Nicki.  She sent Patrick and I this snapchat after he told the group that I was okay and that I had just confirmed that I only saw one image and the surgery was a success.  I really have the best people in my army.  Hands down.


Once the surgeons finished up, I was on my way.  It only took five minutes for the pain to return.  I tried to keep my eyes closed.  I could only keep them open for about 10 seconds before the pain was unbearable.  When we took this picture, I opened them when my sister said 3.  Notice how I still have the marks from where they marked where my eyes were.  Like the surgeon joked, hopefully they didn't really need to use those marks to find my eyes, but it is protocol no matter what surgery they are performing.  Once we got outside, the sunlight was unreal.  My eyes were extremely sensitive.  Even having them closed wasn't completely comfortable.  I could feel the stitches at the top and bottom of my eyelids.  So, if I would move my eyeballs while they were closed, it still felt like shards of glass cutting my eyes.

Car ride!

We stopped at Culver's on the way home.  I was famished.  I ate with my eyes closed and only opened them to see where my drink was.  As soon as I finished, I laid the seat back and tried to sleep off the rest off my anesthesia.

We arrived home around 3 pm.  We walked in the door to all of our girls screaming and running at us, which is our normal welcome home when we have been gone.  Immediately, they asked me what was wrong with my eyes.  I had them open so they could see the redness (my eyeballs looked like they were floating in blood) and my eyes were watering like crazy.  Naturally, they asked why I was crying and was concerned that I was hurt.  I explained to them that my eyes hurt but they were all better and showed them my prism free glasses.  I only stood there and talked to them for 45 seconds with my eyes open, but that was 40 seconds too long!  THE PAIN!!

I quickly rushed to my bedroom to lay down with my eyes closed in the dark. And that is where I stayed the rest of the night.  I couldn't watch TV or read; I literally just laid in my bed with my eyes closed and nestled in with my thoughts.  Later, Linden joined me to go to sleep.  She instantly asked me if I was feeling better.  I told her that my eyes hurt very badly, but I was very happy that they were fixed.  She then said, "Mommy, roll over and I will rub your back and make you feel better."  We always give the girls back rubs when they aren't feeling well so this was incredibly endearing.  She only lasted for about a minute before she fell asleep, but it was an amazing way to end my day.

The next week and a half continued much of the same.  I spent most of my time up until Sunday afternoon laying in bed with my eyes closed.  Patrick did get me some books on tape which was great.  On Thursday the watery eyes finally stopped.  By Friday, I could last a good hour before I felt like I needed to rest my eyes.  Monday-Wednesday was good other than the continued redness, quick fatigue, and light sensitivity.

My check-up went great on Wednesday.  The doctor mentioned that I had more redness in my eyes than most patients at that time, but he was not concerned.  I could see well and he was pleased with the results of my surgery.  I go back at the end of May for hopefully my last visit to the neuro eye clinic EVER!

I started wearing contacts three weeks after my surgery.  AMAZING.  To see clearly, to see one image, and have nothing on my face was wonderful.  To workout without glasses on, well, I can't even put in to words how great that was!  At this point, my eyes are still red, but it looks more like pink eye.  They still fatigue easily so I do not wear my contacts everyday or for as long as I used to pre-stroke.  Simply having the option to wear contacts is a beautiful thing.   

To have my double correction fixed means more than being able to see.  It means that, minus my slight left-sided deficits, I have beat my stroke once again.  It means life is moving forward.  It means my stroke hasn't defined me.

Cheers to many years of being able to literally being able to see things in a brand new light!

Paying it Forward: Session 1

The first session of the 'Do Better. Be Better.' events were a HUGE success.  The session started with  a week one returner's only gauntlet and ended with the very first blacklight gauntlet at each location.  We were able to raise $5400!  Better yet, we helped four families in need, rather than our goal of one family that we originally began with.  Thank you to all of you for making these events so incredibly successful.

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.  

Ross Hansen

In almost 6 years of Ross and Lindsay’s marriage, Ross has endured two spinal fusion surgeries and one crushed vertebrae repair with screws; one surgery during both of Lindsay’s pregnancies.  Since his last fusion in 2012, Ross had been very ill off and on.  He suffered from bronchitis, pneumonia, sinus infections, and war infections all at the same time.  These infections would last three weeks to a month each time with migraine headaches increasing in frequency until he had a tonic-clonic seizure on Aug 27, 2014, which was the day before their daughter's 2nd birthday.  Although it is not considered a "migraine" anymore, his headache is still present today.  Ross now deals with frequent nausea and vomiting. Ross and Lindsay have found an outstanding alternative medicine doctor in Minnesota and are pretty confident he'll be better soon, considering the progress he's made since they started seeing him. Due to his illness, Ross cannot work much and doesn’t receive disability, so it has been a struggle financially.  

Vesna Latic-Sabic

Vesna is a 27 year-old mom of 10 months-old Adhan. On December 25th, 2014, Vesna learned she had Acute Myeloid Leukemia (AML), which is a fast growing form of cancer of the blood and the bone marrow. Vesna will have to have bone marrow transplant.  80% of the time siblings are a match, but unfortunately her siblings were not.  The University Hospitals in Iowa City were able to find a match for Vesna. Vesna has been going through chemo therapy and she has one last session to complete.  At the end of May she will have her bone marrow transplant. Vesna was employed with Bertch Cabinets, but since diagnosed has lost her job due to medical absences. 

 

 

 

 

 

 

 

 

 

 

 

Danielle Morehead

Danielle was diagnosed with stage four inflammatory breast cancer at the age of 31.  Inflammatory breast cancer is a rare and very aggressive form of cancer.  More times than not, a tumor cannot even be felt in a breast exam.  Unfortunately, Danielle’s cancer metastasized to many of her vertebras and liver, leaving her with severe back and abdominal pain.  She was six months pregnant with her third child when she had to make the devastating decision to terminate the pregnancy in order to receive the chemotherapy that she needed.  Her doctors are currently trying to find the right medicine to ease her pain and kill the cancer.  She plans to use half of the funds we gifted her to get a second opinion in Chicago and the other half will be put in a trust fund for her children. 

    

LaShawn Galburth 

LaShawn is the mother of 3 elementary age children and has been in and out of the University of Iowa Hospitals due to complications from a previous surgery.  Due to these unfortunate complications and hospitalizations, she has been unable to work since the end of December.  Previously, LaShawn had held two jobs in order to provide for her kids, even though she receives some government assistance.  LaShawn and her children live in an apartment in Waterloo, but the children attend school in Cedar Falls.  Her children are being cared for by a family friend and grandmother while LaShawn recovers.  LaShawn is using our gift to her to pay for medical expenses that have accrued since she was hospitalized.    ​

NLXF Potluck: Adopt-A-Family Announcement

After having the pleasure of awarding another Do Better. Be Better. award, I was able to speak on behalf of the Adopt-A-Family program.  Below is my speech that was not caught on video.  And the gift I gave Downs was a Chicago Cubs bro tank.

I am not going to spend time talking about my stroke or my condition as I am sure many of you have already heard about it.  Plus, there are more important things to talk about.

 Exactly one year ago, I spoke at my first potluck since having my stroke.  10 days after that, I delivered Myah, our beautiful baby girl.  10 days from now, Myah will celebrate her first birthday and I will be undergoing eye muscle surgery to correct the double vision that still remains from my stroke.

 The last 17 1/2 months have been challenging.  Through it all, I have had many "why me" type of moments.  It is a very unusual and difficult place to be in--to try and figure out what the purpose of your life is.  I have really struggled to do that.

Until last December.  It was a Saturday night and we had just gotten the kids to bed.  I opened up Facebook and read the latest update of my friend whose son is battling cancer.  

And this is where the video picks up.

This is what can happen when a group of people that sweat together decide to Do Better. Be Better. Making 4 families lives a little brighter. #nlxf #adoptafamily
Posted by Nicki Johnson on Friday, March 27, 2015

First, you changed my life.  Then, you helped save my life.  Now, you are helping me change other people's lives.  Thank you Ryan Downs. 

Master of Distraction

I went to bed at 9:45 tonight.  I laid there, with my mind racing for 45 minutes, before I gave up on the idea of sleep.  

I had a long week of organizing everything that has become 'Do Better.  Be Better.'  The NLXF potluck speech and award, scholarship deadlines, selection committees, speeches, and award design, everything that is Adopt-A-Family.......plus I work full time and am a mother of four.  I am not complaining for all of the aforementioned are the greatest blessings.  I do, however, need to apologize to everyone involved in these efforts.  My GSD was over the top the last week and I am so sorry to cause you all stress.

It dawned on me tonight that I have become the master of distraction. If I am worried, stressed, or fearful about something going on in my life I dive head first into anything that will help me take my mind off of it.  I tuck the scary stuff away and consume myself with whatever will keep it stowed there the longest.  This week the lucky distraction was 'Do Better.  Be Better.'

What am I really worried about?  Eye muscle surgery.  Apparently way more worried than I was letting myself admit, considering I am sobbing as I write this.

My eye muscle surgery is on Tuesday.  This is an extremely common surgery and really is the best option to fix my eye and double vision.  Best case scenario is that my double vision would be completely corrected.  Worst case scenario is that I will still have slight double vision and will be able to have a lower strength prism ground in to my glasses so I no longer need to use the stick-on prism.  

I am most frightened by being put under.  All of my doctors, including my neurosurgeon, have agreed that the anesthesia will not harm me.  17 1/2 months ago I would have trusted in that. 17 1/2 months ago I believed without a doubt that everything in life would just work out.  My blind faith in life has been replaced by doubt.  That is a tough pill for me to swallow at times.

Tuesday also happens to be Myah's first birthday. I know she will not remember any of this and we have plans to celebrate her birthday earlier.  Myah's birth was beautiful and I want her first birthday to be just as special.  I am fearful that my eye surgery could ruin it for her.  Those of you that are parents may understand that reasoning.

But Myah is our lucky little girl.  Born on April 7 at 12:07 a.m., weighing 7 lbs. 7 oz.  The number 7 has great significance in the Bible.  I believe God sent us a message through all those sevens and I have to believe that is why April 7 happened to be the open date for my surgery.

I would appreciate a bit more luck though.  Prayers, wishing on stars, crossing your fingers, superstitions...whatever you all have, pull out all the stops please!

And here is to hoping that I can now return to bed with a clear mind and a little bit more peace about Tuesday than I had an hour ago.

The Importance of NLXF Adopt-A-Family

I began writing this post on Tuesday.  I had it nearly finished and ready to publish.  I wrote about how NLXF Adopt-A-Family was developed, the planning of the events, how well the events went, etc.  Then on Wednesday afternoon I had my eye muscle surgery consult and my thoughts about this post changed.  I deleted everything I wrote, even the title.  Who cares about how it was done?  We should all care about WHY it was done.

Wednesday I sat in the exam chair and listened in detail to the procedure they were going to perform on my eyes and all of the benefits and risks of it.  I realize that every surgery has risks, especially when you are being put under general anesthesia.  But those risks become so much more tangible and unpredictable when there is a preexisting condition to worry about.  As I sat there, I tried my best to reassure myself that they were doing their due diligence.  I succeeded in my efforts until the health screening portion of the appointment.

The questions were not out of the ordinary.  I had to give my entire health history (as I do at every new office) and answer the basic questions they ask everyone.  The nurse sat with her back to me at the computer and typed my answers as I recited them.  Soon she asked about my stroke; when it was and what caused it.  After I explained my condition, she abruptly stopped typing, turned in her chair, looked at me over the brim of her glasses, and said, "You are lucky.  You are REALLY lucky."  She paused and continued to gaze at me.  The emphasis of the word 'really' was so deliberate and the look in her eyes was so serious and full of emotion.  It shook me a little.

Do you have any idea how bone chilling that is to hear?  I know I am lucky.  I am lucky to be alive, let alone at 95% normal functioning.  But it never gets any easier to hear it from others, especially from medical professionals that know precisely how I should be because they have seen the other end of the spectrum.

I left the office terrified.  Why would I do this surgery when I am fine?  I can wear my prism, although not ideal, and carry on just as I always have the last 16 1/2 months.  Why would I risk it?  I was instantly transported back to the agonizing days after I was diagnosed with my cavernoma malformation.  The fear, worry, uncertainty....the list goes on and on.

I thought back to those early days on the ride home.  My family and I would have never made it through them without our army; the people in our lives that give us hope and strength when we can't find it within ourselves.  The people who open up their hearts and shine their light.

And that is precisely why NLXF Adopt-A-Family is important.  It is extremely difficult to navigate through an illness.  There are so many emotions to battle and it is a constant struggle to remain hopeful and faithful.  I will never be able to cure someone or prevent someone from becoming ill, but I sure as hell can help give them hope.  Or as Ryan Downs said to me, "even if it helps make one day of their lives a happier place, it's all worth it."  I do have the power to do that.  We all do.  

At this point we have had two fundraising events for Adopt-A-Family; a week one returners only gauntlet and the black light gauntlet.  Both were incredibly successful.  I cried happy tears after each of them.  I will never be able to adequately explain what it feels like to hear a room full of people scream, "Do Better.  Be Better." at the end of a workout or see hundreds of people in neon "Do Better.  Be Better." t-shirts.  My heart was full.  That feeling, that feeling right there, the one that is unexplainable, that is what I want to give people.  I am very excited about the future of this program and am even more thrilled to present the monetary donation to the families that have been nominated.

So, to sign off, I leave you with this:

My very first neurosurgeon told me that I was 'spared' in my first post-stroke appointment. I hate that word.  I prefer to say that God saved me so I could see the greater purpose for my life.  I believe that Adopt-A-Family and the other efforts we are undertaking are my purpose.  It's true; life isn't about what you are given, it's what you create, what you conquer and what you aim to achieve.

You can write your own story.  Write it with purpose.