Honoring Stephenie

What a moving and inspirational day last Friday was for myself and our family. I was given the privilege of accepting an award in honor of Stephenie at the Annual WFYI's Speaking of Women's Health Conference. I only wish that I could have been sitting out in the crowd watching Steph accept this award herself. However, I'm confident she was there in spirit, laughing at just how nervous I was to speak in front of so many people! Even more moving was when we were told by the organizers, that Stephenie's courageous battle with cancer was the inspiration behind this years theme! It never ceases to amaze me just how many people she has touched with her courage, positive attitude, faith, friendship, and love. We can only hope to keep Stephenie's spirit alive by continuing to reach people battling cancer through Christ is my Big C!

We encourage anyone who was touched by Stephenie to tell us your favorite memory or story. I know that it may be a challenge to pick just one, but try!

Thanks, 

Angie

Honoring Stephenie

As many of you may already be aware, Stephenie began a foundation called Christ is my Big C in the months just before her passing. Please see the attached flyer which explains a little about our mission, and has information regarding our First Annual Christ is my Big C Golf Tournament. Please consider helping us keep Stephenie's memory and legacy alive and well, while helping others who are currently suffering through this horrible disease.

More information will be available in the coming weeks on our website: www.christismybigc.org. Until construction of the site is complete, feel free to direct inquiries, registrations, sponsorships, or silent auction items to:
Angie Daniel
angiedaniel0620@gmail.com
or,
2265 President Street
Carmel, IN 46032

Thank you in advance for your support!

Join Us in a Celebration of Life for Stephenie Jocham

Many of you may have already seen the obituary, but we wanted to share the information about Stephenie's funeral and memorial services.  There are a number of opportunities tomorrow for you to remember her.  Formal services in celebration of Stephenie's life will take place Tuesday, June 7, 2011 at Second Presbyterian Church, 7700 N. Meridian Street, Indianapolis, IN 46260. Calling is from 10:00 a.m until 12:45 p.m. with the funeral service to begin at 1:00 p.m. A reception at the church immediately follows.

For those who are not in the Indianapolis area, or cannot travel, a graveside service is scheduled at 6:00 p.m. at Prairie Creek Westlawn Cemetery, in Prairie Creek, Indiana (near Terre Haute).

Family and friends are encouraged to come to George’s Neighborhood Bar & Grill at 71^st and Binford (http://www.georgesneighborhoodgrill.com/) beginning at approximately 8:00 pm as an informal gathering to share memories and stories about Stephenie.

If you are unable to attend any of the services, but would like to share a memory or extend sympathy to the family, please visit Bussell Family Funerals’ website  http://bussellfamilyfunerals.com/where you may sign the guestbook.

In lieu of flowers, donations may be made to the non-profit foundation Jocham established as part of her legacy.  The charity works with area churches to provide a number of services to assist cancer patients and their families in managing their treatment and the demands of living with cancer: 

Christ is My Big C, Chase Bank
Reference-Deposit Christ is My Big C
12489 North Meridian Street
Carmel, Indiana 46032

The family would like to take the time to update all of Stephenie's wonderful friends, colleagues and family about her current condition.  In the past week, Stephenie's condition has worsened significantly.  Due to increased swelling in the brain and seizures, Stephenie is now physically incapacitated.  She is not in pain and is resting peacefully surrounded by her loved ones.  Thank you for your continued love, support and prayers.

Dear Wonderful Family, Friends and Colleagues,

Much has happened since I last wrote.  Things were going well with my physical rehab when I learned two weeks ago (the Friday before Good Friday), that I had double collapsed lungs.  The surgical options were limited due to my right lung being completely collapsed with a large tumor encapsulated in it, but thanks to my amazing rockstar team of surgeons and doctors, another critical condition has been diverted.  On Saturday April 16, I underwent lung surgery.  Somehow, my thoracic surgeon, Dr. Ascioti, was able to find a space to create an airway from my lung to my bronchus, which had been closed over by the tumor.  That same Saturday, Dr. Ascioti also performed a plueredis on each side of my lung, which is a talc flurry procedure designed to keep my lungs open.  I went on a ventilator at that time and without ever fully coming to, I had a second surgery on Tuesday, April 19, whereby Dr. Ascioti built and placed a stint in the bronchus to leave an airway going open forward.  My lung is now approximately two-thirds inflated and it looks really good.  The passage way to my bronchus is open and the lungs are nearly fully inflated.  The doctors are calling it a miracle.  I remain in intensive care, having just woken up on Easter Sunday.  I unfortunately missed that day as well as the proceeding week with the boys, which was excruciatingly difficult. I have been on a ventilator and feeding tube and was unconscious for several days, so I remain extremely weak presently but I am getting stronger daily. I am expecting to be moved to another unit soon, which means I will be able to see the boys, about which I could not be more thrilled.

Thank goodness for wonderful doctors and grandmas and grandpas and family. Bryce’s dad even came from Atlanta to stay for several days, which was not only a great help but also a real treat for Bryce.  Special gratitude to my unbelievably amazing sister, Angie, who has been here more than she has been with her own family in the past month.  Thank you for my sweetheart, Kurt, who along with my family, made sure I was never alone for a minute during this latest ordeal.  Thanks to my unfailing crew at JHDJ, including especially Lollie, my left arm at work, who has managed to ensure a pre-planned seminar this week will continue as planned, aside from simply keeping things running at the office day to day in my absence.  I am so grateful to the many who have sent meals, gifts, flowers, Easter treats, etc.   I hope you will forgive my faux pas this one time in not being able to personally thank each of you for the birthday gifts for Kye and the Easter and birthday gifts and treats for the boys.  Thank you also for the nearly three hundred emails and text messages I have received during my brief lapse from reality.  Thank you for allowing me to reply via blog, and for your continued love and support of me and my family, which continues to awestruck me. I am very grateful to all of them and hopeful that I will become stronger everyday so that I can soon come home to my family and start working on rehabbing again.  As you can imagine, over a week on the ventilator and unconscious has left me very weak and in need of starting all over with my rehab.  My left side arm and leg do have movement, though, and I am committed to doing all I can to resume getting stronger and more mobile as soon as I can. 

Most of all, thanks be to God for each new day and for the continued privilege of being able to fight this battle with small victories along the way.

John 3:8  The wind blows wherever it wants.  Just as you can hear the wind but can’t tell where it comes from or where it is going, so you can explain how people are born of the Spirit.

Ephesians 3:16  I pray that out of his glorious riches he may strengthen you with power through his Spirit. 

Hugs and prayers to all of you until I have the energy to update again.

Love,

Stephenie

Bed Bound - Bah!

Just a quick update to let everyone know that, through the grace of God, I have regained significant function in my left leg and arm! Two weeks ago I was completely bed bound, unable to even sit up and the only movement I had on my left side was a slight shift of my left big toe. I was a blueberry pancake with one arm! I had to rely on my wonderful and unfaltering family around the clock for every basic need. I am working hard daily to rehab and have a long way to go, but am thrilled and grateful beyond expression to report the strides being made! I need help standing but once up can walk short distances with the help of a crutch! i was able to take a car ride yesterday and even climb stairs with assistance well enough to sleep in my own bed. The function returning hopefully means the bleeding from the brain tumors has stopped and is reabsorbing. An MRI this week will hopefully shed some light.
The best part is I was able to celebrate Kye's 7th birthday last weekend, which was pure joy.

For I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you, plans to give you a hope and a future. Jerimiah 20:11.

Thank you for the continued prayers and support. God is good!

Love,
Stephenie

 

New Challenges - Continued Blessings

Hello dear family, friends & colleagues! Much has happened recently that has left me in the hospital & largely incapacitated, hence slow in my ability to provide updates. I lost complete use of my left arm & fingers a few weeks ago, which I learned last week was due to significant bleeding in my brain from both tumor sites post-radiation. I began working with a new & wonderful team of neurologists & neurosurgeons who unfortunately determined the situation in my brain is inoperable. There has been a concern that the bleeding might continue, especially if we continued with chemotherapy which has been causing my platelet levels to drop significantly & prevent my blood from clotting. Stopping chemo is not ideal since any time I have had a short break from it the cancer in my lungs has grown rapidly but everyone agreed the brain & motor function issues had to take first priority. Then last Thursday we learned my lung collapsed again, necessitating a lung surgery. Anesthesia was determined to be too risky for the brain bleeding so an outpatient lung procedure was performed instead on Friday at IU which was not immediately successful in reinflating my lung so I was admitted. Unfortunately by Friday evening the continued brain bleeding had taken all use of my left leg and foot, leaving me unable to walk. Although it is possible this situation could improve were the bleeding to reabsorb on it's own, it is more likely I will continue to be bed (and hopefully wheelchair) bound. I am home now since Thursday, which is such a blessing! Spending every moment I can with my precious boys and family.

Concepts such as driving and walking were so quickly replaced with the unfamiliar world of near complete dependance on others for every basic need. It has been humbling to say the least. Still, I am surrounded non-stop by family, who have transformed into the most selfless and amazing around-the-clock caretakers. And as if I were not already feeling loved, I was absolutely bathed in it Friday night as 85 showed up under the moonlight of my back porch to remind me with songs sung by candelight that I am not alone on this journey.

Another special treat this week is that Bryce made his 8th grade baseball team at Creekside!!!! He has worked tirelessly toward this goal and I could not be prouder!

Thanks to so many for continued prayers, well-wishes, meals, encouragement and so much more. I love and appreciate you all more than I could ever express!!!

Romans 8:38-39

And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Much Love,

Stephenie

Blown Away

I am simply awestruck by the outpouring of encouragement and support received daily recently in the form of prayers, cards, texts, emails, blog & facebook posts, flowers, food, jokes, sweet treats, calls...the list goes on. I have never felt so loved nor have I experienced such kindness and compassion. "Thanks" falls woefully short of accurately conveying the immense gratitude in my heart.

Brain radiation occured last week as scheduled and was largely unremarkable, save being confined to a very Hannibal Lector-type mask for about an hour. The procedure is not for claustrophobes! I finished with a craving for fava beans & a nice chianti, as well as with relief that it should be a one time procedure. Future scans beginning in two months will reveal its effectiveness, but predictions from my radiation oncologist are encouraging. The effect of the brain tumors to my left arm & hands has unfortunately worsened but I am hopeful that function and sensation may be eventually restored so that I may resume important activities such as two-handed typing, talking with my hands and applying make-up while driving.

My trip to MD Anderson for treatment options went well. It was reassuring to present at an actual sarcoma center and to connect with a sea of other patients from around the globe who have also been stricken with this rare cancer. They have accepted me as a patient and, while they were not able to offer a miracle cure, are dedicated to working alongside my amazing team of Indiana doctors with some fresh strategies and treatment options which will hopefully help to manage my cancer, with a much appreciated emphasis on quality of life while I continue to undergo therapy. I will travel to Houston every eight weeks or so for testing and ongoing care.

Prior to my departure to Texas I had to have a chest tube surgically placed through my side due to a pneumothorax (partially collapsed lung) secondary to a hole which formed in my lung from the cancer. As the result, I was restricted from flying so a long road trip to and from Houston ensued, including my amazing father and sweetheart, Kurt, taking turns driving like warriors through the night to get me to my appointment on time. My step-mother, Terri, also stayed up all night, keeping the men awake and alert while also watching for deer alongside the interstates (we saw dozens of them). Thier efforts were valiant and truly tireless. My mother stayed home to care for the boys, managing to seamlessly get them to and from their daily activities in my absence. I am blessed.

Despite the quick trip we found time to try Houston's famous Pappasitos (best Mexican I've ever had) and some real Texas barbeque, from a picnic table with Loretta Lynn crooning in the background and a giant sculpture of an armadillo across the street. Looking forward to continuing to experience the Lone Star State.

I was thrilled to host Kye's end-of-the-year basketball party on Saturday before we left (again, with help from mom and my dear friend Stephanie Edwards) and to return in time to attend Bryce's first basketball tourney game. Also on Saturday came word that Bryce has been accepted at Brebeuf for high school beginning next year! I am beyond proud that God chose me to be mother to these two incredible boys.

 

We also have joy with our troubles, because we know that these troubles produce patience. And patience produces character, and character produces hope. And this hope will never disappoint us, because God has poured out his love to fill our hearts. Romans 5:3-5.

Thank you for bringing joy to my life.

Stephenie

Time to start blogging!!!

Having just passed the one year anniversary of my diagnosis with cancer last month, and after a year of exhaustingly trying to individually update my amazingly supportive team of friends, family and colleagues, I have finally decided it best to get the word out going forward via blog. It has been quite a journey and the saga continues...

My story began in October of 2009 when I developed a small, painful mass in my right thigh. As it continued to grow I sought medical treatment and was misdiagnosed twice before learning on January 22, 2010 that the lump in my leg was not a muscle strain, as I had been told, but a large cancerous tumor called sarcoma. Although the thought of cancer was initially frightening, I was comforted by my prognosis - five weeks of radiation to my thigh followed by a surgery to remove the tumor. The cure rate for sarcoma is high so long as the cancer does not metastasize (spread) to any other part of the body, namely the lungs, and my lungs were clear.

The surgery to remove the then football-sized tumor in my thigh was successful and I was grateful to be cancer free until a subsequent scan revealed a few sarcoma lesions in my right lung. Surgery to remove the lung nodules was scheduled but had to be canceled when, a few days before surgery, an updated lung scan showed the cancer had grown to about 20 lesions in each of my lungs - too much to remove surgically. I was admitted to the hospital almost immediately for a week of intense inpatient chemotherapy, to be followed by another three weeks of the same last spring and summer. Being stuck in the hospital for weeks without the boys has been the most difficult part of my cancer experience to date.

Chemotherapy prevented my incision from thigh surgery from healing completely, prompting a second surgery to that area in July. I have been continued on various regimens of chemotherapy for the past 48 weeks, which has largely kept the sarcoma in my lungs under control until this week.

I learned Monday that several of the tumors in my lungs have grown significantly since my birthday, only two weeks ago. My lung surgeon believes surgery would result in her having to take my entire right lung, which is not ideal as this would not leave me with good options going forward, considering the significant amount of cancer remaining in my left lung. I also learned that the cancer has spread to my brain. I have two tumors, one on the right and one on the left. The right-sided lesion has caused my left arm to become numb from wrist to shoulder, and has left me with limited use of my left fingers. The latter is seriously affecting my guitar hero game, which I do not appreciate. J I begin stereotactic (pinpoint) radiation to my brain next week. The course regarding my lungs is not certain as of yet. I am scheduled to be evaluated at MD Anderson in Houston, TX on 2/21 and my docs here are doing all they can to get that appointment pushed up due to the sudden rapid growth of cancer.

I recently came upon the following scripture, which prompted me to adopt a firm belief (as opposed to a mere hope) that I will be healed: Mark 11:22-25 “Have faith in God,” Jesus answered. “Truly I tell you, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in their heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Needless to say, recent developments have been a "test of faith.” However, I remain extremely positive and in high spirits, choosing to believe that I will be eventually healed from this awful disease, and knowing that if I am not, everything will still be okay.

I appreciate the mounds of support shown to me and the boys by so many over this past year. I love receiving your well wishes and words of encouragement and hope you will understand if you contact me and I am unable respond. I have spent nearly every day this week treating from morning to evening, with much more to come. I intend to be stingy with the time I have away from docs and hospitals, reserving it for my boys.

Please know that I am not afraid of what may come. I am blessed beyond measure and grateful constantly for the amazing life I have lead to date. I am often asked what I need. I am getting along great and feeling mostly good. I am working and cooking and going places and living my life per usual. My mother's relocation to the area last year has been a huge help. If things change due to surgery, etc., I will absolutely reach out for assistance. For now, I just need your prayers. Please storm the gates of heaven with pleas for complete healing and for God to continue to cloak me and the boys with a blanket of love and peace.

Much love,

Stephenie