Theofanis is in Remission!!! He is cancer-free!!!

 

Theofanis earned his "Purple Heart" Courage Bead
which represents the end of his 15 month-long

battle to cure him of Neuroblastoma.  

Dearest Family and Friends,

On August 15th, we received the long-awaited official call from Dr. Cohn that Theofanis is in remission from his cancer! There is no evidence of disease. No Neuroblastoma. Theofanis is done with treatment!

He is healthy!!!!!!!
There aren't sufficient words we can use to express how extremely happy, thrilled, and thankful we are. Our son and family went through so much, fought so hard, overcame so many obstacles, for so long... Now the day has finally arrived when we can celebrate Theofanis' health! And all of you who prayed for him, who stood by our family and gave us strength throughout this battle can finally celebrate with us!

He is a winner!!!!!!!
In our very first blog posting, we told you a very important thing about our son. We told you that he likes to win. And then you all told us, "He will win!" It became our mantra...a battle cry...a warning to the cancer...a source of inspiration and hope for us, our daughters and for Theofanis himself. We all then held on to that conviction that he will overcome the pain, the fear, and the struggles of treatment and ultimately reach victory. So today, we happily, yet cautiously, declare success. He has triumphed!

With faith, love and prayer, he did it!!!!!!!!
August 15th is one of the greatest Feast Days in the Greek Orthodox Church which commemorates the Assumption of our Virgin Mary. We were blessed and humbled to receive the wonderful news of Theofanis' remission on such a holy day. And moreso, we were blessed and humbled that by God's greatness and mercy, He, Christ, Panayia and all the Saints in heaven answered our prayers, placed their hands upon Theofanis to protect him and grant him and our family this ultimate gift of life and health.

Thanks to you all!!!!!!
Our family has been honored by the love and compassion bestowed on us by our extended family, our dearest friends (old and new), our beloved church, our community, our work, our schools, our doctors and nurses, and from people from all corners of the world. We have and always will cherish every word, every hug, every action, and every tear that you shed with us. And thank you all for your unceasing prayers. Please continue to keep Theofanis in your prayers so that he will remain cancer-free forever, and that he, his sisters, and all of our children can grow up and grow old together. And until a cure is found, please pray for the thousands of children who are diagnosed with childhood cancer each year.

With all our love,
Kosta and Eleni

THE SPOT - How the Yianases received the fantastic news on August 15th
On their way to Comer Children's Hospital for Theofanis' last day of scans, the family decided to make a quick stop at St. Demetrios in Elmhurst to light a candle, say a prayer, and deliver flowers to Panagia on her Feast Day. Theofanis, Demetra and Sophia also received Holy Communion.

Having already had an MIBG scan, an audiogram and a bone marrow biopsy the previous day, Theofanis was scheduled for a second day of MIBG scans, three CT scans and then a clinic visit and check-up with Dr. Cohn.  Since the whole family, including their newest addition Christina accompanied Theofanis to the hospital, mom and dad each took their turns staying with Theofanis during his scans. Daddy stayed in the room with Theofanis for the MIBG scans. Mommy stay with him during the CT scans. "Scanxiety" was in full effect for Kosta and Eleni as the real-time images of the scans were displayed on monitors. As outlines of their son's body, bones and organs took shape on the monitors, they would closely look and try to decipher the images. But only Dr. Cohn and her colleagues could provide them with accurate and final assessments of the scans, which were expected later in the day.

At clinic, while the entire family waited for Dr. Cohn to come in for Theo's check-up, several visitors stopped by the exam room.  Nurses Mark, Bonnie, and Patty came by to wish Theo well, sneak a glimpse of Christina, and deliver information about immunizations, post-treatment appointments and tests going forward. 

There was lots of excitement in the tiny room, but Kosta and Eleni's anxiety level was still very high as they were hoping to get some final test results. Was he clear? The fact that Bonnie was scheduling future appointments was a good sign. Dr. Cohn then entered the room with a spring in her step, very happy, almost with a glow. She looked at the six Yianases sitting in the examination room with a big smile on her face. She admired baby Christina and congratulated them on her arrival home. She turned to Theo for his exam, smiling and telling him he looked great. So, what about the test results? Theo's blood work and urine tests were normal. The CT scan of his head came back negative, but she was still waiting for the radiologist's report on the chest and abdomen CTs.  She said she saw the MIBG images herself and they looked great, but wanted official confirmation from the nuclear medicine radiologist that the scan was negative. She also expected the bone marrow biopsy, performed the day before, to be negative as Theo never had any Neuroblastoma cells in his bone marrow. This preliminary news was definitely great news!

Then, Theo asked when his central line could be removed.  Theo has had an open hole though his chest with two tubes hanging from his body for 15 months. He's been unable to take baths or go swimming. He's had to endure uncomfortable dressing changes and flushes once a week. Theo was anxious to undergo surgery to get his line removed since he would be done with treatment.  Dr. Cohn told him that Bonnie could contact the surgeons soon, but only AFTER she received the final results that Theo's scans were clear and confirmation that there is no evidence of disease. She once told Kosta and Eleni that she's a bit superstitious about it, and it was her thing to wait until her patients are officially declared done with treatment.  

Among the visitors in the exam room was Amy Hayes, Theo's Child Life Specialist, who stopped by to update Theo's Beads of Courage.  She pulled beads for dressing changes, pokes, physical therapy sessions, and other events in his treatment that transpired since his last discharge from the hospital in June. He received a special bead to honor his sister's arrival home from the NICU also.  He strung them all together, reaching a total of 935 beads. Amy also let Deme and Sophia pick out their own special Courage Beads in honor of their own journey these past 15 months.  Amy then announced that Theo could pick his most special bead of all, his end of treatment courage bead--His "Purple Heart!" He was told, though, to hold on to it and to add it to his string after he received the official "remission" call from Dr. Cohn.  And then Amy turned to Eleni and Kosta and said, "There's a special mom and dad courage bead for each of you." Eleni looked at Amy, shook her head and began to cry. Amy teared up as well, then let Kosta and Eleni select their very own courage beads, which they planned to add to Theofanis' string, next to his Purple Heart. 

As Theo's clinic visit concluded for the day, Dr. Cohn said she would call the Yianases as soon as the final test refults were definitive. "It may be tonight or even tomorrow she said." There were hugs all around for Dr. Cohn, Bonnie, and Amy.

On the way home from Comer, the Yianas family decided to stop off at Greek Town for late afternoon lunch or early dinner--"Linner" as Theo called it.  It was the first time then entire family, including Christina, went out to eat together.  While sitting at Athena's restaurant in the outdoor patio, the cell phone rang. Kosta grabbed it.  It was Dr. Cohn.  The scans came back clear and were all negative.  Theo did not have Neuroblastoma anywhere in his body.  "I am so happy to deliver this news to you," she said.  "Thank you, thank you, thank you." he told her.  "Would you then consider him to be in remission?" he then asked.  "Yes," she replied. It was a wonderful moment, the culmination of endless days of worry, pain, tears, hopefulness and prayer. Dr. Cohn, who in May of 2011 outlined an excruciating course of treatment for Theofanis, told his parents that he was clear of the disease and done with cancer treatment! While Eleni and Kosta with tears of joy and relief, toasted the good news with Theofanis, Demetra, Sophia and Christina (with her baby bottle), Dr. Cohn emailed the final results to the Yianases with the OK for Bonnie to schedule a date to remove Theo's central line. The next day, Theo's surgery was scheduled, plus they received offical confirmation that Theo's bone marrow was also clear!

So ended the unbelievable 15-month ordeal that tested the sanity, emotions, stability and foundation of a family wrought with worry about their children and terrified about their future.  Yet the Yianases believed in their Church, clung on to hope, and survived--mostly through the strength, faith, endurance, bravery and indomitable will of a little boy who provided everyone with an example to approach any life challenge with courage, grace, trust, determination and a beautiful smile.   

• Theo had his last dressing change on Tuesday, August 21st with his wonderful and phenomenal nurse, Joanna.
• Theofanis' central line is scheduled to be removed Thursday, August 23rd.
• He starts school on Monday, August 27th as a happy and healthy kid!
• Theofanis will continue to be monitored with scans, blood tests, and clinic visits for five years under Dr. Cohn's care, starting with his next scans scheduled in November.

We will post updates on this blog periodically with what we hope and pray will always be good news! This blog has been a chronicle of Theofanis' and our family's battle with childhood cancer. When he and his sisters grow up and are ready to read this, we hope that through the words we wrote here they'll understand and feel how much we infinitely love and adore them and will go to the ends of this earth to protect them forever!
-Eleni and Kosta

Immunotherapy #6 is Done and His Journey Is Nearing its End

The day has finally come when Theofanis will be undergoing his End of Treatment scans.

"End of Treatment." These are three words that we all have been waiting to hear and experience. Three words that bring unsurmountable joy for the Yianas family. Three words that equally frighten them.

Theofanis completed Immunotherapy #6 on August 5, 2012.
This was the easiest round of treatment since it solely involved taking medicine at home. For two weeks, he took two capsules twice a day of cisRetinoic Acid, also known as Accutane.  He dealt with extremely dry skin, chapped lips, and a bloody nose. But overall, and aside from tiring of his parents who were constantly chasing him with Aquaphor and Chap Stick, he managed rather well. Theo also began Physical Therapy to focus on rebuilding his strength and stamina, which was severely compromised because of the myriad treatments his body was exposed to. Now going twice a week and working with his physical therapist, Shelly, he's seeing steady improvement.

With the exception of a few scheduled clinic visits to Comer for check-ups, his hospital visits have been social instead of mandatory. He and his family attended the annual Comer Oncology Picnic where he got a chance play games and throw wet sponges at his beloved doctors. The Yianases also headed to U of C for a "Flashes of Hope" photo shoot to pose for an updated family portrait. NBC Weekend News was also on-site filiming for a feature story about this fantastic organization where member photographers donate their time and talent to capture moments in the lives of cancer families. Click on the following link to catch a glimpse of the Yianas kids during their photo shoot: http://www.msnbc.msn.com/id/40153870/vp/48186160#48186160

Though still officially in treatment, Theofanis has been making the most out of his summer. He attended Vacation Church School and a couple of day camps, wrapped up his baseball season, and hung out with family and friends. He spent a lot of time with his sisters, Demetra and Sophia. And, he made frequent visits to see his newest sister, Christina at the NICU at St. Alexius. He read books for the Palatine Library Summer Reading Program. He headed down to his dad's hometown, Decatur, for an overnight trip. And, he tried to stay as cool as possible in the blistering 100+ degree F heat that overcame Chicago this year. With his central line still in, swimming though was still on-hold.

Then, some significant excitement surfaced at the end of July...when the world was celebrating the Opening Ceremonies of the 2012 Summer Olympics, the Yianases brought home their newest addition! Yes, Christina, nearly 3 months old, was discharged from the hospital and was welcomed home for the very first time! She was still on a small amount of respiratory support, but the happiness and relief that the family felt overpowered the worries and concerns they had about managing her care with oxygen and monitors. It was a very happy day in the Yianas home. Everyone was finally together under one roof!





With Sincere Gratitude

Surprised with a bear bigger than
himself, Theofanis was excited to
be able to meet and thank these
inspiring and incredible students
of our Greek community!

Theo and his family had the opportunity to finally meet the ladies of the 8th annual Midwest Pan Hellenic Youth Ball Committee who organized a sold-out gala event held this past March. Students from Northwestern, Loyola, DePaul, University of Illinois at Chicago, and University of Chicago came together to support the Hellenic community and also honor Theofanis' battle against Neuroblastoma. Due to complications during Theofanis' second round of immunotherapy, Theo was hospitalized and the family could not attend the event. But this summer, he and his family were finally able to meet a few of the incredible women of the Pan Hellenic Youth Ball to thank them, their guests, contributors and supporters in person! Sincere and heartfelt appreciation goes to Vicky Karahalios, Angela Koumi, Eleni Loumbroukos, Vasiliki Mitrakos, Marina Stavrakantonaki, and Penelope Antonopoulos!


The Spot
On Tuesday, August 14th and Wednesday August 15th, Theofanis will repeat the tests and scans he took 15 months ago when he was diagnosed with Stage IV, high risk Neuroblastoma. He will undergo two MIBG scans, a bone marrow biopsy, a CT scan and an Audiogram. Scanxiety is at it's highest point right now for the entire family, as these are considered his "End of Treatment Scans." With these tests, Dr. Cohn will deliver significant news to the Yianas family--the status of Theo's disease...and what to do next.

With Faith, Love and Prayer He Will Win!
When Eleni told Father Andrew that Dr. Cohn had chosen August 15th to conduct and review Theofanis' scans, he said to her, "Panayia chose August 15th." And with those words, Eleni and Kosta were calmed. They were reminded of all the significant milestones in Theofanis' therapy and how they occurred on very important and holy days. They were no coincidences. And neither is this one. We celebrate the Dormition of our Theotokos on August 15th, a wonderful and important feast day of our Orthodox faith, honoring our Holy Virgin Mother of Christ. And on this day, Dr. Cohn will deliver the preliminary results of Theofanis' End of Treatment Scans.

Panayitsa mas, you've protected Theofanis throughout these past 15 months of cancer treatment, we pray to you to deliver us the news on your holy feast day that he is in remission, that he is cured of his disease, and that he is returned to health...now, always and forever.

In Memorium 
http://www.uchospitals.edu/news/2012/20120805-liu.html
 "I didn't get to say goodbye," teared Theofanis when Eleni and Kosta told him of the tragic loss of Dr. Donald Liu.

We would like to extend our most sincere sympathies to the Comer family on the heartbreaking, tragic and unbelieveable loss of Dr. Liu. Our thoughts and prayers are with you all, as well as with his wife and children during this incredibly difficult time. He was a wonderful and kind man and a brilliant surgeon who performed miracles on so many children. We feel blessed that his talent and his compassion was bestowed upon our son, and we pray that his memory will be forever eternal.