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.

Immunotherapy #5 is DONE and Theo Is Home!!!!!

He spent 120 nights in the hospital over the course of his cancer treatment. But on Friday, June 22nd, Theofanis bade a final farewell to the 6th Floor of Comer Children's Hospital, and we all are praying that it will be forever!

Plus, a surprise homecoming that he did not expect...

THEO'S LAST HOSPITAL STAY MARKED THE END OF ANTIBODY TREATMENT!

On Father's Day, Sunday June 19th, after a fun-filled evening at the Saint Demetrios Summer Greek Festival, Theofanis was admitted to Comer for his fifth round of Ch14.18 Antibody treatment. Exhausted and dizzy from the spinning carnival rides he insisted on going on, he arrived at the hospital accompanied by his mom, dad and two sisters Deme and Sophia. (His baby sister Christina is still in the NICU at St. Alexius, working on eating and growing. They visited her after church that morning and even got a chance to hold her!)

THE SPOT

Theo was escorted to room 602, which happened to be the very first room he stayed in when he started this journey in 2011. The family unpacked the Icons that have accompanied Theofanis at every chemo infusion, surgery, transplant and antibody infusion and set them in their usual place on the desk facing his bed. They then unpacked his clothes, family photos, books, toys and a Star Wars Lego set to keep him occupied during his stay. They ate a late dinner together, which they brought from the festival, and then it was time for Daddy and the girls to head home. Mommy would be staying with Theo during the first few days of the infusion which would start at 10 am promptly the next morning. 

First thing on Monday, Theo had to make a big decision...how should he decorate his room for the last time? Eleni realized the significance of this hospital visit when she heard her son ask to draw "Gold Ribbons" in honor of finding a cure for childhood cancer. Already hooked up to the IV pole and pumps, he grabbed the window markers and began to draw and write, "I'm a cancer survivor." For the first time, Theo acknowledged that he is in remission. He also dedicated one window to the incredible staff of Comer 6, whom he thanked for the care that they've given him throughout the 13+ months of his treatment.

Theofanis' final round of ch14.18 antibodies would once again be given at 1/2 dose. Dr. Cohn, who was attending and speaking at a world-wide Neuroblastoma conference, would be in Toronto for the week. It always made Kosta and Eleni nervous when she was out of town during his treatments, especially knowing that Theo's response to the antibodies could be completely unpredictable. But by now, the drill was routine: his premeds of bendadryl and tylenol were started, the PCA pump with morphine was set, and his bag of part human/part mouse chimeric antibodies was hung and would run over a period of 10 hours each day. The nurses monitored his blood pressure and vitals every 15 minutes and then tapered down to every hour. That was the drill, and this time--this final time--Theofanis' body cooperated beautifully. The week was completely uneventful. Yes, he would get extremely tired by the end of each day, but that was expected. And besides, how could this child not be tired after all that he has gone through?

So throughout the week, the challenge was purely around entertainment. Mom and dad were at Theo's side accomodating his "let's play a game" requests, his sisters played and watched movies with him, his nurses played wii with him, and he even had a "playdate" with his best buddy, Pantelis, who spent an entire day at Comer. He had a visit from the Sox and Cubs Umpires who were escorted by Southpaw (the Sox mascot for all us Northsiders!) He also updated his strand of Courage Beads to 897! He also hosted a pizza party on Thursday evening for all the nurses on Comer 6!

Theofanis was officially discharged on Friday morning. But before he left the hospital, he made his own "Rounds." As he walked around the floor to say goodbye and give hugs to his nurses, he passed out Gold Ribbon Childhood Cancer cookies to the wonderful team that took such good care of him over the past 13+ months. And then he made his way to the Clinic to pass out cookies to Dr. Cunningham and his doctors, more nurses, Amy (his Child Life Specialist), and his care team. 

And that's how Theofanis said "so long" to overnight stays at Comer! Theo did say that he will miss many of the nurses, though. "We will visit. Only visit," said mom and dad.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!

So, Theofanis headed home to find a huge surprise...a celebration was waiting for him!
As the car turned onto Morrison Avenue, Theofanis noticed the street lined with cars, a huge bounce house in his front yard, and dozens of his friends waving signs and cheering. "Did you know about this?" he asked his mom and dad. Kosta and Eleni had predicted that Theofanis would either be ecstatic or really mad about being surprised with a "Welcome Home" party. So when they looked toward the back seat and saw their son's eyes wide open staring out the window, and when they saw the immense smile on his face, they knew that Theo was very, very, very happy!

It was an incredible sight for Eleni and Kosta to witness...their driveway filled with friends and family who love and care about their son, welcoming him home after a year and a month of hospitalizations...their son walking into a crowd of hugs and kisses...their home filled with happiness!

There was silly string flying through the air and colorful posters waving to an fro. And, speaking of fro's, kids were wearing crazy wigs, had colorful streaks in their hair, and painted their faces in celebration of the one year anniversary of "The Great Shave-Off!" where many of the same faces came to cut off their locks in support of Theo when he lost his hair to chemotherapy.

There was laughter and lemonade! Balloons and bouncing kids! Food and cake! What started as a small and quick get-together to cheer the end of Theofanis' in-hospital cancer treatments, turned out to be a huge celebration! So thank you to everyone who came, to everyone who sent their love, to everyone who has prayed for this day to come, and to everyone who has been alongside us during this long, long journey! And thank you to Theia Galinda and Theia Teja who helped pull off this fantastic surprise!

MOVING FORWARD

August will mark the official end of Theofanis' treatment to rid Neuroblastoma from his body. He continues to take Acutane at home until August 5th. At that time, he will undergo a battery of scans and tests to once again confirm the status of his disease.
With God's mercy and strength, we ask everyone to pray that his scans will be clean, confirm that he is in true remission, and that there will be no evidence of disease. Our Lord, Panayitsa, and all the Saints in heaven, please let there be no evidence of disease...now and ever! Please protect Theofanis now and always!

Here are some fun photos from Theofanis' Welcome Home Party...



Immunotherapy #5 - The Last One is Almost Done!

Welcome baby sister Christina Maria & Theo's Immunotherapy #4

Christina Maria born May 13, 2012
2 lbs, 5 oz. and 14.5 inches long

On Mother's Day the Yianas Family welcomed their newest addition, Christina Maria, born 3 months too soon.

...and, Theo completes his 4th round of Immunotherapy

"Wow." That's what a lot of people said as they heard the news that the Yianas family has a new addition. Some folks only recently found out that Eleni and Kosta were expecting a baby, and there were even a few out there that didn't even know Eleni was pregnant. So when news that Eleni was in the hospital due to complications with her pregnancy at only 27 weeks, many people including the Yianases themselves wondered how much more worry can this family take on?

On Tuesday afternoon, May 8th, Eleni called her OB from the National Restaurant Association Show being held at McCormick Place. She was not feeling well and needed to get to her doctor asap. It would take her over an hour to get from downtown to her doctor's office in Hoffman Estates, so her OB directed her to go straight to the hospital for an ultrasound. When she arrived at St. Alexius, test showed that the baby was fine, but there was something very wrong. She was having contractions and hemorrhaging, and no one knew why. The baby was only 27 weeks gestationally, and Eleni was at real risk of going into premature labor. "We need to keep that baby in as long as possible," said Dr. Ray as she ordered tests and mandated that Eleni stay on bed rest until the baby is born. Eleni argued that it was impossible to do because Theofanis was scheduled for treatment at Comer in mid May, and she needed to be there for him. And what about Deme and Sophia? The girls had their dance recital the next week. How could she allow Kosta to do everything on his own? Her argument was moot. Eleni was going nowhere until the baby was born, and at that moment, no one knew when that day would be.

Over the next several days, Kosta and the kids were by her side as much as they could be outside of school and activities. The kids would cuddle in the hospital bed with her. They missed her, and they worried about her and their unborn sibling, too. There was a lot of worrying going on. And for the week that Eleni spent in the hospital, Kosta, as always, took care of everything and reassured his wife. And so did her dear family and friends who sat by her side at the hospital.

Eleni's OB, high risk doctors and neonatologists monitored the baby closely. They gave Eleni medicine to stop the contractions, medicine to help with the baby's lung and brain development, and antibiotics against infection.They then waited for signs of improvement. But instead, there was concern that amniotic fluid was leaking and the placenta started to detatch. By Saturday morning, there was confirmation that the amniotic sac had ruptured. And, at 1:30 am on Sunday morning, on Mother's Day, Eleni called Kosta to come to the hospital because she started to have painful contractions. This time, the doctors would not stop them. She was going into labor.

Throughout the night, Eleni didn't advise the nurses of her contractions, though they knew according to the monitors that she was having them every 3-5 minutes. At 7 am, Eleni finally asked for some pain medicine. That's when the staff started to prepare. Within about an hour, Eleni started to dilate from 0 to 5 cm. That's when her doctor was called to come to the hospital, that's when more medicine was hung for the baby's neurological system, and that's when the staff quickly moved her into a labor and delivery room, grabbing the Cord Blood Stem Cell Collection kit on their way out. Needless to say, Eleni and Kosta freaked out. It was too soon to have the baby.

The OB arrived and announced that Eleni was dilated to 10 cm and had to start pushing with the next contraction. No epidural. No time. The neonatal intensive care team was set up in the corner of the room...waiting. With two pushes, a baby girl was born at 10:05 am. Kosta and Eleni grabbed a glimpse of their tiny precious daughter, who did not cry or make a sound and watched while she was handed off to the NICU doctor and nurses to be taken care of. This would be the team that would take care of her for the next three months. 

Mommy holding Christina,
3 days old.

"What's her name?" they asked. Christina Maria, named after Christ our Lord and his mother the Virgin Mary.
Christina Maria weighed in at 2 pounds, 5 ounces and was 14.5 inches long. She was put on a ventilator to help her breathing but was strong enough to breath room air (with assistance) the same day she was born. She is a fighter, just like her brother!

So, the Yianas family now has an overlapping journey as
their newborn preemie, baby Christina, battles to grow,
reach milestones, and get stronger each and every day.
And the Yianas family has two hospitals and two medical care teams that they are depending on to bring their two children to full health.

CHRISTINA'S JOURNEY

Proud big brother Theo,
big sister Deme and big sister Sophia
with Christina...posing for their
first picture together!

The NICU doctors and nurses describe Christina as strong, fiesty, and cute. When she opens her large eyes and looks straight at them, their hearts melt. And when her family surrounds her, talks to and sings to her, her eyes stay wide open and she follows the sound of their voices. She likes to be nestled on mommy's chest for kangaroo care time and be swaddled and held by daddy. She wears a tiny diaper, is tasting her mommy's milk, is learning how to suck her pacifier, and once in awhile you'll hear her cry, too. She's doing things that a baby should do. Which is all good news.

Though born at slightly over two pounds, Christina has a long way to go until she's developed enough, strong enough and old enough to go home to her family. Her first week of life was an extremely critical one, where her organs were closely monitored. Her lung and brain development was critical and making sure her other organs were functioning properly were the focus of the week. Scans of her brain came back with good results. Her stomach and digestive system were functioning properly. And her lung function was as expected for a preemie. She progressed from a ventilator to a c-pap (mask as seen in photos) to a canula (tubes in her nostrils). She has a lot of tubes and wires connected to her for monitoring. She has a pic line that's been placed in her arm (similar to Theofanis' central line) for IV fluids, nutrition and medication.

There were two concerns that the doctors have been monitoring. Christina was born with a very, very high White Blood Cell count. A normal reading is at about 11. (This past year, the Yianases were used to seeing Theo's wbc's between 0 and 3 and would celebrate anything over 5). Well, Christina's wbc was 60 and days after she was born, climbed up into the 80's. The staff contacted a hematologist and additional tests were ordered. Knowing what cancer has done to this family, the doctors didn't waste any time trying to figure out what was going on with this tiny baby. The possibilities ranged from a condition where extremely high white cell counts occur but diminish to normal levels within the first couple weeks of life to the possibility of leukemia. Thankfully, the test and slide smear that measured the protein levels on the individual white cell came back ruling out leukemia. And Christina's wbc started to taper down with each passing day. The second concern that's being monitored now is a heart murmur. An echocardiogram detected a moderate to large PDA opening which was causing the murmur. This valve is open and fuses shut after a full-term baby is born. For a preemie, it takes a while to close or needs assistance to close. Christina was given medicine to treat the open PDA. The first dose showed good results, with the PDA being slightly open. The cardiologist decided to wait and see if it would close on it's own, but after a few days, the heart murmur appeared again and the PDA had gotten larger. A second dose of medicine was administered and an echo will be done again to see how effective it was. Tests are pending.

As you can imagine, Christina's brother and sisters are very excited to have a new baby. Though, they are very emotional during this critical time. They instantly fell in love with her and instantly became protective of her. They drew pictures to decorate her incubator in the NICU. Although they cannot hold her in their arms quite yet, they hold on to her hands, hoping her tiny fingers will sqeeze them. They sing and read books to her, too. They smile and laugh when they see her, but then they also cry because they want her home. But big brother Theo appears to be the most emotional one of them all. "I know she's having a tough time," he says. Theo recognizes the monitors, the leads, the tubes, the IV bags, and sympathizes with his baby sister. He's said, "I wish it were me in that bed instead of her." And as Eleni and Kosta try to explain that the NICU is the best place for her to be and that she's being taken good care of, they realized that they needed to tell their son that Christina is not going through what he's been going through. When they told Theo that Christina is not getting the same medicines that he got, he stated, "So, she's not throwing up?" No, sweetheart, Christina's medicine is helping her grow.

Christina's original due date was August 7th. That day will now be called her "corrected birthday" and will most likely be the time when she'll be able to go home to her family. Until then, she's being taken good care of by a fantastic neonatal intensive care team at St. Alexius. The nurses there are beyond fantastic, and one of Christina's nurses, Sandy, is a fellow parishoner at their beloved church, St. Demetrios. Her son Jimmy, serves in the altar with Theofanis! 

Daddy holding Christina, 1 week old.

THE SPOT
THEOFANIS' 4TH ROUND OF IMMUNOTHERAPY
On Sunday, May 20th, Daddy, Theofanis, Demetra and Sophia went to church, where Theofanis served in the Altar. Mommy went to the hospital to be with Christina. After church, they all gathered at St. Alexius to read books and sing to Christina. Then they left her to sleep (and grow) and went home to pack for Theofanis' hospital stay that would begin that evening. Before heading to Comer, the family stopped by St. Alexius to visit with Christina once again. At 10:30 pm, Eleni, Demetra and Sophia dropped off Kosta and Theofanis at the University of Chicago, where Theo would be getting his fourth round of Ch14.18 antibodies, which would be started the next day, which was also the holy feast day of Saints Constantine and Helen.

So on Monday, while Eleni was at St. Alexius with Christina, Kosta was with Theofanis at Comer Children's Hospital. The plan for the week was that Eleni would be with Christina and Kosta would be with Theo. This decision was a tough one to make because both parents wanted to be able to stay with both kids. Theo was used to having both mom and dad with him throughout his hospitalization weeks. Though, he understood that mommy needed to be with his newborn sister, he was still disappointed. Deme and Sophia were at school...and an army of friends and family were helping out with pick ups, lunches, dinners, play dates, errands, and overnight visits. (The help that the Yianas family received during this week was incredible. The family could not have gotten through the week without everyone's help, so thank you to all who were there for them!)

On Monday morning, Theofanis' antibodies were hung. Once again, Eleni, Kosta and Dr. Cohn agreed that Theo should move forward with 1/2 dose of Ch14.18, similar to round #3 which he tolerated well. The Comer team, of course, would keep a close eye on Theo, looking for any adverse side effects. The first day went well, until the evening when Kosta called Eleni and told her that Theo said he thought he was seeing things. He claimed he saw Eleni, then Deme and then saw things on the walls of his hospital room. Immediately, Kosta and Eleni became worried and concerned that he was starting to have hallucinations, similar to when he had the severe reactions to the drugs during round #2. Kosta called Dr. Cohn who had already left the hospital for the evening and they agreed to stop the infusion right away. Dr. Cunningham then arrived to give Theo a neurological exam. It was decided that they would wait until morning to decide if they would start up the antibody again or if Theo and Kosta should pack up and go home.

It was a difficult night of worry. The next morning, Theo woke up, looked and felt fine. Dr. Cohn arrived and gave him an extensive exam. He appeared to be at baseline. He appeared ok. So, Kosta and Eleni (over the phone) agreed with Dr. Cohn that they would restart the infusion and if an event reoccurred they would stop treatment altogether. With that decision, the Ch14.18 was ordered, hung and started. And Theofanis seemed to tolerate it well for the remainder of the week. No hallucinations, no fever, minimal itching and discomfort. The infusion continued on and finished on Thursday night. He was discharged on Friday morning, with round #4 done, and one last round of antibodies to go in June!

Daddy kept Theo busy in the hospital throughout the week. A little homework, a little Wii, and an intense Star Wars Lego project kept him occupied. He would Facetime with Deme and Sophia, too. But by Wednesday, the family's separation was getting tough. So, Eleni made arrangements for the girls, and then made a surprise visit to her son. Theo was really happy to see his mom and spent several hours just cuddled up with her in his hospital bed at Comer.

WITH FAITH, LOVE AND PRAYER,
HE WILL WIN!

Christina Maria, 2 weeks old.

We know that Theofanis is passionate about winning, and that's exactly what he's been doing along every step of his cancer treatment. And he hasn't done it alone. It's with God and the love, prayers and support of so many people from around this entire world that he and his family have been able to find the strength and courage to fight and move forward. And it's with the same faith, love and prayer that the tiniest member of the Yianas family will also win her battle. So, please expand your prayers to include Christina Maria. May God protect her now and always. May God grant her the strength to grow so she can go home to her family soon. 

The 1 Year Anniversary of Theofanis' Diagnosis

One year ago today, our warrior Theofanis was diagnosed with a rare childhood cancer called Neuroblastoma.

And today, Eleni and Kosta are re-living every moment that happened on May 4, 2011. Every tear and every fear is burning brightly in their minds.

While thinking back to everything that Theofanis has gone through...the biopsy, the scans, the chemo, the nausea, the fevers, the baldness, the stem cell harvest, the pain, the surgery, the tubes, the infusions, the morphine, the fear, the vomit, the sleeplessness, the transplant, the second transplant, the mucositis, the isolation, the separation, the processed food, the loss of taste and appetite, the nail loss, the dry skin, the exhaustion, the radiation, the clinic visits, the dressing changes, the overdose, the counting, the fear, the confusion, the antibodies, the IL-2, the accutane, the shots, the hallucinations, the brain swelling, the neuropathy, and the WHY???????????  While thinking back to everything that this child has fought against and fought for, it's ended up been a very difficult day. And when reminded of everything that Demetra and Sophia have also gone through, witnessed and lived themselves, the day was becoming more difficult with every passing moment.

But Eleni and Kosta are trying very hard today to instead focus on all the blessings and miracles that God has given them. Firstly, Theofanis is in remission, which is the greatest blessing of all! Their home is filled with love for each other, and they have been surrounded by the most wonderful and loving family, friends, church, schools, neighbors, community, co-workers and even strangers who have given them strength and support through their actions, words and endless prayers. People from all over the world have given them strength and encouragement. The cards, the posters, the letters, the scrapbooks, the lemonade stands, the shaving events, the hair cuts, the fundraisers, the 1000 cranes, the gifts, the toys, the Courage Beads, the blog comments, the hugs, the phone calls, the donations, the acts of incredible human kindness that have been displayed in Theofanis' honor and the baby that they are expecing in August...these are all blessings that have had a huge impact on how the Yianas family was able to get through this past year.

While today, May 4th, is a day that has and will forever bring back emotional memories for Eleni and Kosta, it ended up being a very nice day for Theofanis, Demetra and Sophia. The three Yianas kids did not realize nor even know that today is any kind of anniversary. (And Eleni and Kosta prefer to keep it that way.) Today, all three kids were at Pythagoras at Saint Demetrios, and today, Theofanis received 1st place in the Science Fair!  He presented his project on Heat and Evaporation, and was extremely happy and proud of his award!

We are so proud of you, Theofanis, our brave son!
There are so many people throughout this world
who are so incredibly proud of you!

Moving Forward with Treatment - Immunotherapy #3

Seeing slow but positive signs of their son's recovery, and with the mixed recommendations from the world's top neuroblastoma experts, Eleni and Kosta thought long and hard on whether to move forward with Theo's Immunotherapy treatments.

After the severe and serious neurological effects caused by the second round of Immunotherapy, Dr. Cohn followed Theofanis' recovery closely. She was also consulting with her international colleagues on whether they believe Theo should continue with therapy or stop treatment all together. There was consensus on stopping the IL-2. That drug is clearly too dangerous for him. And, there was consensus that if Theo were to proceed, he should do so at only 1/2 dose of Ch14.18 antibody. But should Theo attempt to continue at all? No expert could deliver an answer to the Yianases.

"In my heart of hearts, I think he's cured," said Dr. Cohn. "But what if I'm wrong?" And with that statement, Eleni and Kosta agonized. They were hesitant to say, "let's move forward," because they feared the severity of the side-effects their son could be faced to battle. But they reverted  back to their original objective to do everything they can to cure their son of cancer and prevent relapse. After all, that's why they agreed to two stem cell transplants. That's why they sought proton beam therapy. That's why they placed their son under Dr. Cohn's care.

So, with the words, "What if I'm wrong," ringing in their ears, Eleni and Kosta explained to Theofanis that he would be going to the hospital again for treatment. He would have three more treatments of Ch12.14 at half dose.

Immunotherapy Treatment #3 - Off COG protocol, but praying that 1/2 dose will benefit him in his fight towards his complete cure.

On Sunday April 22nd, after the Greek Independence Day Parade on Halsted Street in Chicago, the Yianas Family went out to an early dinner. They then went home and packed up Theofanis' suitcase for a week-long stay at Comer Children's Hospital. After a tearful good-bye, Eleni and Theofanis left for the hospital. He cried that he didn't want to go, and his sisters cried as they waved goodbye. Theo cried at the hospital, too, saying that he misses home, his sisters and his daddy. That night, Eleni slept in Theo's hospital bed, holding her son close to comfort him. She did that for several nights.

On Monday morning, the Ch14.18 antibody was hung on his IV pole, his pre-meds were started, and Dr. Cohn came in to check on him and confirmed the 1/2 dose treatment plan. Kosta arrived soon after the infusion started. And, for the remainder of the week, Kosta and Eleni watched for signs of any unusual reaction. Everyone was watching him very closely.

And, with God's grace, Theofanis was able to tolerate the antibody treatment with minimal side effects. The tingling he had in his hands spread to his arms and he had slight but quick rashes. But he was able to avoid a fever and thus antibiotics; his pain was controllable at a low morphine continuous infusion; his blood pressure and vitals were stable; and his itching was not completely unbearable. He also was able to do some daily exercises that were recommended by the pediatric physical therapy team. Overall, he did well. So, on Friday morning, Theofanis was discharged first thing in the morning, as planned. He and Kosta went home.

Theo still had signs of nerve issues caused by the chimeric antibody, and it took several days to begin seeing improvement, but overall and in comparison to his last treatment, he did great, thank God.

His older sister, Demetra, turned nine on April 26th while he and Kosta were in the hospital. Deme still had her balloons on her door as is the tradition with the Yianas kids, yet Daddy and Theofanis were on a screen via FaceTime singing Happy Birthday to her. Thank goodness for technology! Although the Yianases had celebrated Deme's birthday the weekend before, it is always special to hug your daughter and sister in person. Happy Ninth Birthday, Deme!

So over the next week, the Yianases started experiencing some "normal" family activities. All three kids went to school, Kosta began coaching Theofanis' baseball team as the season began, and Eleni attended a business meeting in Orlando. There were Open Houses to go to, practices to go to, school projects to complete, and a schedule to follow. Aside from making sure to keep up with the accutane and GM-CSF injections (which daddy has taken extreme care in making sure it's given as planned) and making sure there are daily signs that Theo's strength is returning, the Yianases were breathing a little easier over their decision to move forward with treatment.

Immunotherapy #2-B Causes Severe and Rare Neurological Reaction

The drive home from Comer after the very difficult
cycle of Antibody Treatment #2.

The doctors and nurses told them it was going to be a rough one, but it was far worse and more frightening than anyone expected.

"The combined and cumulative effect of the drugs gave us a neurological scare towards the end of the week. He became disoriented, was jittery and shaking, started hallucinating, and did not shut his eyes for over 24 hours. I would try to hold down his eyelids, but they wouldn’t stay closed. Then, the doctors came in on Friday morning (after both antibody and IL-2 infusions were complete) and told me that they wanted to do a brain scan. When I asked them what they were looking for they told me that they were looking for brain tumors. I don’t know what scared me more, hearing those words or watching him suffer. They told me that the antibodies seek out any remaining neuroblastoma cells and train the body to fight them, and the theory was that the antibodies may have found tumors that were affecting him neurologically. They decided to do a CT and then would follow up with an MRI if needed. The scan came back ok, thank God, so then we went into a wait and see pattern, waiting for these problems to resolve themselves." - Eleni

Kosta and Eleni agree that this Antibody Treatment that Theofanis received was far more frightening than chemo or either of the transplants. Things were happening to their son that no one expected or could explain. And when his adverse reaction to the antibodies did not go away after the infusions stopped, panic set in. And, Dr. Cohn was out of town....

Theofanis was admitted to Comer on Sunday night, March 25th, after a fantastic weekend.  He was able to finally eat out, visit family, and serve in the Altar again on a major Feast Day -- the Annunciation of the Virgin Mary.  In addition, March 25th is also Greek Independence Day so it was an even better gift to be able to be in church as a family.  The plan for the week would be that the entire family would be together, given that the girls had Spring Break.  So, the Yianas family reserved a suite at the Ronald McDonald House a few blocks away from Comer so that the girls could keep Theo company and the Kosta and Eleni could be close as the antibody and IL-2 would be infused together.  The infusions began in earnest on Monday with the correct dosages administered, and Theo was able to tolerate everything very well.  The kids kept busy and made crafts and played.  Daddy brought in the Wii system from home so all the kids could play together and volunteers from the play room came up to visit and coordinate the craft building. 

As the day wore on, Theo's temperature began to creep up despite the fact that he was getting Tylenol and Benadryl around the clock.  His blood pressure was low and although this was expected, it was still something the residents had to address.  He was given a blood transfusion Monday night to try and bring his blood pressure and hemoglobin levels up but his fever continued.

Tuesday tiredness set in and Theo slept most of the day. His fever continued and hit levels of 104 degrees F.  The doctors offered to add Motrin and alternate it with the Tylenol every three hours.  Once again, Theo was given Morphine in anticipation of the pain he would likely have with the antibody, and everyone seemed to attribute it to the fever and restlessness Theo had.  Dr. Cohn came by and said that Theo was tolerating things well at this point.  She mentioned that she was heading out of town to Children's Oncology Group meetings and would not be back until the next week.  Dr. Cunningham would be the attending physician in her absence.  For Sophia and Demetra, meanwhile, it was getting a little boring sitting around the hospital, especially since Theo was becoming increasingly tired from the effects of the morphine and antibody.  The Yianas family's dear friends, the Tunneys, picked up the girls for an outing to the Lincoln Park Zoo while Kosta and Eleni stayed with their son. When the girls returned in the evening, Eleni took them to Ronald McDonald House as Kosta stayed with Theo overnight. Theo became even more restless and began to talk in his sleep.  It didn't seem as though he was resting well, and it did not help to have the nurse coming in every three hours to wake him to take Tylenol or Motrin orally.  He was also put on an antibiotic because of his continued fever while daily blood cultures were taken to ensure there was no bacterial infection causing his fever.

By Wednesday morning, Theofanis was a bit more comfortable as it seemed they found a good level of pain relief and his fever abated. However, he seemed more agitated.  When his sisters came in for the day, he did not want to play with them much.  The crafts volunteer came by and the children put together Easter crafts.  Theo seemed disinterested in it and did not want to play Wii at all.   He became visibly upset easily over small matters while interacting with Deme and Sophia.  As the doctors rounded and came in to see Theo, Kosta let Dr. Cunningham know about Theo talking in his sleep the night before.  Dr. Cunningham noted that that was not really a side effect of the therapy and it was dropped.  It seemed to be categorized as something to be followed and to take a " wait and see" approach to it.  Kosta saw more of this overnight Wednesday and it became concerning.  Theo did not sleep well at all and was extremely restless, tossing and turning every few minutes.

On Thursday Theo started showing signs of a strange reaction. He was not himself and his personality changed considerably.  He had no desire to play or do anything.  Eleni and Kosta were told that the side effects for this therapy are unpredictable while he's getting infusions.  Because the antibody is experimental in nature anyway, combining it with the IL-2 can cause side effects that are different with each cycle and with each day within the cycle.  With this, the Yianas family were counting the hours until the infusions ended. The antibody ended at 10pm Thursday evening.  The Yianases were relieved that it was over, yet, the IL-2 still had another twelve hours to go.  Kosta took the girls to Ronald McDonald for their last night there, as they were to check out Friday morning.  However, overnight Thursday Theo was not well and Eleni's account above of what transpired throughout the night led to the realization that something was very wrong.

Theofanis literally did not sleep overnight Thursday.  His eyes would not close. They rolled back in his head as he tried to go to sleep and they would become cross-eyed as they danced around but they would not close.  He was confused and did not know where he was or who was in the room.  He was hallucinating, seeing people and things that were not there. He would grab in the air for things.  Eleni became frightened and summoned the resident at about 3 am, who, in turn, brought in the fellow.  The fellow then announced to Eleni at about 6:30 am that they would like to do an MRI, presumably to look for more neuroblastoma as the theory was that perhaps the disease metastasized to his brain.  The fellow said that, after consulting with Dr. Cunningham, that it was the best thing to do about it.  Eleni asked to contact Dr. Cohn and get her opinion on the matter.  The fellow seemed shocked but Eleni insisted that only Dr. Cohn knew what would be best in this situation.  Eleni then called Kosta and informed him of what was going on.  Dr. Cunningham later came in and said after speaking with Dr. Cohn that the best thing to do was have a CT scan to rule out more neuroblastoma, but also rule out blood or other fluid buildup in the skull.  They just did not want to miss anything.

Theofanis went down for a CT scan and Kosta and the girls met with them in the Radiology department at Comer.  Theo seemed different. Theo would obviously not be discharged on Friday.

On Saturday, Theo's left eye and left elbow experienced intense swelling.  These were the areas of his original tumor sights, and they swelled up so badly that his left eye was sealed shut. Again, the doctors told Eleni and Kosta that the theory was that the antibodies were attracted to the matured ganglion cells that are still there. Theo slept the majority of the day and evening. It was still a restless sleep, though. Eleni had taken the girls home, as it became evident that it was unsettling for the girls to see their brother in this difficult state. They did visit briefly on Saturday night when they brought Daddy and Theofanis some dinner.

Finally, the hallucinations subsided on Sunday morning. And since the doctors saw improvement with the swelling, they decided to let him go home since his vitals were stable. He could barely walk, he was exhausted, and he still wanted to sleep. Obviously, he was not returning to school as planned.

For the next few days, Kosta and Eleni saw little improvement...His eye swelling went down, but he continued to have droopy eyes, would sometimes go cross-eyed, he could barely walk or raise his arms, he had tingling in his hands, pain in his legs, and he was fatigued and exhausted.  Dr. Cohn would be returning from her trip on Tuesday and asked to see Theo on Wednesday morning.

So on Wednesday Dr. Cohn finally examined him herself, saw first hand these unusual side effects, and determined that he had a very serious, rare, and unusual neurological reaction to last week’s antibody treatment, causing neuropathy.  She appeared worried and told Kosta and Eleni that she is considering terminating his treatment. She’s reached out to the Study Chair for advice and guidance. She also ordered an assessment by an opthamologist and and MRI that was done the same afternoon. Although the belief is that most of his symptoms should go away in a few weeks, she wanted to get a full neurological assessment. She also dismissed the theory that the antibodies caused the swelling on his original tumor sites because they were attacking the ganglio cells. She said the swelling was due to the radiation and fluid retention because of tissue sensititivity.

As the Yianases waited for the results of the opthomologist's exam and the MRI, Dr. Cohn was in constant contact with them. And, she decided that Theo cannot go on with the antibody treatment as per the full protocol. These are her thoughts: Firstly, only if Theo is at 100% in three weeks will she consider moving forward at all. Secondly, there is no way that treatment can continue at full antibody dose, and will certainly be dropped to 50% dose. Thirdly, Dr. Cohn will seek the advice of the study chairs at the COG, but even if they recommend to move forward with treatment, Dr. Cohn wants to sit down and discuss with Eleni and Kosta whether it's best to simply terminate treatment.

Over the next several days, the opthomologist results came in with news that there are no effects to the optic nerves. This made Dr. Cohn very happy. She was encouraged by knowing that there is no damage to the eyes or his vision. The MRI results, though, showed bilateral inflammation in the brain. And with this news, many of his symptoms were attributed to the swelling in his brain. The fact that the inflammation is bi-lateral is positive news that is reinforcing the belief that all the side effects he is experiencing should go away, though it will take weeks for Theo to fully recover. If inflammation was limited to one portion of his brain, it would infer that there was another very severe abnormality. Dr. Cohn also said the the neuroradiologist saw similar reactions to chemotherapy drugs and confirmed that symptoms eventually cleared up. Dr. Cohn also said that after consulting with the COG, the experts determined that it is very unusual for the antibodies to be the cause of the swelling, rather, they believe it was the IL-2 (interleuken) drug that caused it. She said that the antibody molecules are too large to penetrate the blood-brain barrier, and that the IL-2, which are smaller molecules are more likely to cross into the brain.

The doctors are still struggling to provide Eleni and Kosta with examples of other kids who have experienced this same severe neurological reaction to this antibody treatment. They continue to be told that what happened to Theo is very rare and unusual. And, they are told that they must continue to closely monitor him to see signs of slow improvement. The Yianases are obviously extremely worried and concerned, both short-term and long-term. And, when they heard Dr. Cohn say, "In my heart of hearts, I don't think Theo should continue with treatment," their thoughts have been racing from "Good. No more drugs. No more infusions. No more poison," to thoughts of "what's going to happen if he doesn't get the full dose of antibodies that's supposed to improve his event-free survival chances by 20%?" 

Theo goes back for a check-up on Wednesday with Dr. Cohn. And Eleni and Kosta are extremely happy to report that over the weekend, Theofanis has started to show slight signs of improvement. His eyes look a little better. He started walking a little without assistance. And thankfully, he started to smile and laugh a little. He got out of the house a little, too.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!
This is Holy Week for Greek Orthodox Christians. On Holy Easter we will celebrate the resurrection of Christ. During these most holy days, let's ask the Lord to grant strength and healing to our beloved warrior, Theofanis. Let's pray that God give wisdom to Theo's medical team to continue to give him the best care possible and to help Dr. Cohn, Kosta and Eleni make the best decision for Theo, so that he will grow up to live a very very long, healthy and happy life that is completely CANCER-FREE!

Immunotherapy #2-A and Theo's Day +100 celebration!

Theo with a bowl of fresh fruit and his
super large "100" ballons and poster
signed by his doctors and nurses!

Friday, March 23rd was a very, very BIG day for Theo:

• He completed the first half of his Immunotherapy Round #2 (IL-2 infusion) completely asymptomatic! It was by far, the quietest, easiest, most boring week spent at Comer! 
• He was discharged from the hospital and sent home to spend the weekend with his family!
• He celebrated the end of his "100 Days" post-transplant isolation! (Which was really more like 150 days since he had two transplants.)
• He was done taking Acyclovir, the twice daily, worst tasting, oral medicine he obligingly took for nearly 140 days straight.
• He went to school for 1/2 a day, the first time in over five months!
• He ate a huge bowl of fruit filled with FRESH strawberries, FRESH pears, FRESH apples and FRESH bananas! And, he took a shopping trip to Whole Foods where he filled the grocery cart with more FRESH fruits and vegetables!
• He ate pizza from Rosati's!
• He went to bed extremely happy!

The entire Yianas family went to bed that night very, very happy!

Yes, Friday March 23rd was the start of a very "normal" weekend for the Yianas Family. They were back at doing normal family activities without restrictions. They went to the movies and saw The Lorax. They went video game shopping using Christmas/Birthday present gift cards, they went out to breakfast, lunch and dinner, and they went to church where Theofanis served in the Altar. They saw both Giagia Sofia and Giagia Agni. They hung out with their cousins, Demetri, Sofia and Anna, too.

And, when Theo went out in public, there was nothing to draw attention to him. There was no mask telling people, "I'm immunocompromised." No pale skin. No bald head. Nothing telling the world, "I'm battling cancer." All anyone noticed was a smiling, happy kid with a buzz cut!

And actually, something happened during his 1/2 day return to school that made everything seem "normal" for any seven year old. Theo got picked on by a fifth grader! Really! Here's what happened: Theo was wearing a Cubs hat while waiting to be picked up after school with his sister. A fifth grader wearing a Sox hat went up to him and flicked off Theo's baseball cap. When Theo put his hat back on, the boy flicked it off for the second time. So, Theo then decided to give it right back at him. He went up to the fifth grader and flicked the boy's Sox cap off of his head. Then, the boy flicked off Theo's cap for the third time. So again in second retaliation, Theo flicked off the fifth grader's cap.  Finally, the boy realized that this first grader wasn't going to back down, so he gave up and walked away. In the midst of this, Deme went to Theo's aid, called the boy "mean", but realized that Theo had things under control. She watched her younger brother stand up for himself! Little did this fifth grader know that Theo has faced and has overcome much scarier things than a bully's attempt at intimidation. So, during dinner that night, Eleni and Kosta unexpectedly had to teach their son about bullies, how to deal with them, and how to make sure he doesn't end up in Mr. Kerkemeyer's office with a possible detention. (Note: Mr. Kerkemeyer is a Cubs fan.)

The Yianases actually have a confession to make. They slightly broke the "rules" before Theofanis' 100 days of freedom. Theo was feeling great, his counts were good, and he was getting stronger each and every day. The weather was summer-like and by day +90, Theo was itching to "get out of the house." There were frequent signs of sadness of not being able to see his friends or go to school. So Kosta and Eleni selectively and cautiously chose an outing or two or three. The first was attending the Marion Jordan "Fun Fair." The second was attending his sister Deme's Volleyball Tournament. The third was going to church the day he was starting Immunotherapy #2-A. Although it was not what the doctor ordered, it was exactly what he needed. With unexpected tight hugs and kisses for his mom and dad, he would simply say, "Thank You, Mommy and Daddy." But the smile on their son's face said more.

THE SPOT
Theofanis is undergoing his second round of Immunotherapy. This is a two-part treatment program. He completed part A last week while he was inpatient. He received a 24-hour infusion of IL-2 (interleuken) for four continuous days. This was the first time that Theo received this drug and it was unknown what side effects would surface during this infusion. The list of risks filled two pages of the COG protocol; some kids get through it without any issues; other kids have serious life-threatening side effects. Fortunately, with God's grace, Theo had no issues whatsoever with the IL-2 infusion. He was in great spirits throughout the week (outside of a few bouts with boredom). He was not in pain. He had no fevers. His appetite was normal. His blood pressure, heart rate, oxygen levels and all his vitals were normal. He was talkative and he even played Wii with his nurse, Frances. He was discharged right after the infusion was done on Friday. Kosta and Eleni both agreed this was the easiest week that Theo spent in the hospital. The only unfortunate thing about the week was that Theo and dad missed Demetra's Greek dance troupe performance and Sophia's Pythagoras Children's Academy program in honor of the 25th of March Greek Independence Day.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!
"Unless someone like you cares a whole awful lot, nothing is going to get better." - Dr. Seuss. This was the message in the movie, The Lorax.  And when the Yianases saw that statement printed on the big screen, they thought about how true it is for all the families who are battling childhood cancer, and how applicable it is to their son's own fight.  If it wasn't for all those people who care, for all those people who have shown their love and support for Theofanis, for all those people who are praying for their son...if it wasn't for all of you...it would have been hard for the Yianases to imagine that one day things would be better...and continue to get better.

This time of year, an organization called St. Baldrick's holds thousands of head shaving events throughout the U.S. to raise money and awareness for the need for childhood cancer research. This year, a team from Jay Stream Middle School (Cousin Sophia Haab's school) under the team leadership of Officer Diane Wells, shaved their heads in honor of Theofanis! On March 9th, the Jay Stream team of teachers and students gathered at Dave and Buster's in Addison and joined hundreds of other people who raised money and shaved off their locks for the children fighting pediatric cancers. So, a huge thank you to Officer Wells and the others who care enough about Theo and all our children to express such a wonderful act of kindness and compassion! With you, things will get better!

Immunotheraphy Round 1

WHAT IS IMMUNOTHERAPY?
If Theofanis' scans show no evidence of disease, why is he continuing treatment and doing Immunotherapy?

Theo's next phase of treatment called immunotherapy is purely focused on the prevention of relapse. The cause of relapse is usually from minimal residual disease (MRD). MRD refers to the presence of neuroblastoma cells too small and too dispersed throughout the body to be detected by standard tests and scans, even after remission. This treatment is designed to train the body's own immune system to detect and destroy neuroblastoma cells that have survived chemotherapy, transplant or radiation therapy.

The treatment involves the injection of a substance called monoclonal antibody ch14.18 into the bloodstream. The antibodies then seek out and attach to neuroblastoma cells and signal the immune system to destroy them. The antibody ch14.18 (a chimeric antibody -- part human and part mouse) is just one of the medicines Theofanis is getting over the next six months of Immunotherapy treatment. He will be receiving infusions of IL-2 (Aldesleukin) during certain rounds of immunotherapy which is shown to increase the anti-cancer effects of the monoclonal antibody. These drugs are administered similarly to chemo. Theo will also be taking GM-CSF injections to help boost his overall immune system and oral cis-Retinoic acid (Accutane) which teaches any undetectable neuroblastoma cells to stop growing and turn into mature nerve-like cells that do not grow and divide.

Theofanis is closely monitored during this phase of treatment. There are many risks and side-effects that can develop while he is receiving the infusions. Because there's risk of the body rejecting these foreign antibodies, many of the side effects are completely unpredictable and can change on a daily basis.

Eleni and Kosta met with Dr. Cohn several times to discuss and prepare for their son's Immunotheraphy treatment. They precisely reviewed the dosing plan. Dr. Cohn also spent time explaining possible side effects and counter-treatment options. Because some medicines cannot be administered using the same central line that's receiving the chimeric antibody, she suggested that the Yianases consider surgically implanting another "port" in Theofanis' arm to avoid the use of an uncomfortable poke IV in his hand or arm. Initially hesitant to even consider another access point in their son's body, Eleni and Kosta decided to discuss the option with Theofanis and allow him to make the decision. Without much hesitation, Theofanis opted against a port (he didn't want tubes hanging from his arm for six months) and he opted against an IV poke...he chose to just deal with the pain and side effects from the treatment. But, after hearing from his parents that "dealing" with pain was not an option, Theofanis chose to get a poke and and IV...that is, if and when he may need it.

THE SPOT
On the evening of Sunday February 26th, Theofanis returned to the 6th floor of Comer Children's Hospital to begin his first round of Immunotherapy. Accompanied by his mom, dad, and two sisters, he was directed to the same isolation room that he called "home" during his second stem cell transplant in December. Sunday evening was a quiet night. The Yianas family set up their familiar iconostasis. Since Theo's stay would be limited to (hopefully) five nights, decorations were kept at a minimum. Photos of family and friends, a hand-drawn aquarium mural on the window, and a massive Star Wars Lego set were the focal points of his room.

After Kosta, Deme and Sophia hugged and kissed Theofanis goodbye, Eleni and Theofanis settled in for the night, knowing that the next morning, the doctors, nurses and pharmacist would be arriving early to begin Theo's ch14.18 antibody treatment.

The one side-effect that the doctors guaranteed Theo would have was pain. They explained that the antibodies attach to nerve receptors throughout his body so he would be in an extreme amount of pain during each day's 10-hour infusion. So first thing on Monday morning, the medical team connected Theo to a continuous morphine pump and slowly increased the amount and rate of the pain medicine to a predicted baseline level. Kosta soon arrived at the hospital, as both parents felt it was important to both be there on this important day. Then the ch14.18 arrived in a small bag marked "experimental". It was hung on his IV pole and the infusion started at a half rate for the first half hour. Closely monitoring his blood pressure, heart rate, oxygen levels and looking for any clinical signs of allergic reaction, his nurse seldom left Theo's bedside. With no immediate signs of an adverse reaction, the infusion was increased to the full rate and for the next 9.5 hours, the antibodies were taking hold and the next fight in Theo's journey began.

Theo kept himself busy throughout the day and did not feel any of the possible effects that all were made aware of earlier.  Yet, as the infusion was almost complete, Theo experienced some double-vision and blurriness.  As Eleni began to worry, she was assured that this was a possible effect and would dissipate once the infusion was complete for the day.  Theo fell asleep as his first day of the treatment ended.

Kosta relieved Eleni on Tuesday and stood by the next few days as Theofanis experienced many different side effects.  Theo's side effects ranged from hives on his head and continued pain to itchiness and spot rashes all over his body.  These events also resolved themselves after the infusion was complete for the day and were gone by the next morning.

However, Theofanis experienced a very high fever from Tuesday night which he could not shake.  At its highest level, his temperature reached 104 degrees and was not even relieved with Tylenol every four hours.  As a result, he was put on antibiotics as a precaution and blood cultures were taken every day to rule out bacteria as the cause. His heart rate was elevated yet his blood pressure became very low.  The doctors decided that a blood transfusion was necessary and Theo received the transfusion overnight Wednesday.

Each day brought a new challenge, but Theo was ready and determined to accept it.  He took his daily medicines orally, sometimes in the middle of the night, and did not complain.  Although from time to time he was sad, he was mostly bored and wanted so badly to go home.  He completed a thousand piece Lego set in about 6 hours that Nouna Evy and Nouno George gave him as a present on Thursday, finished his homework for the week on Wednesday, and played Wii and Ipad games to bide his time. He even caught a Bulls game on television with his dad.

Several times a day, doctors and nurses would check on him to note his progress. The doctors would always mention how well he was doing and how well he looked.  Kosta and Eleni peppered the doctors with questions about his side effects and if this could be a precedent for his subsequent therapy visits.  The answer seemed to always be the same.  Each child is different and past therapy experience is not indicative of future tolerance of the therapy.  In other words, it may or may not be a tougher experience next time.  Dr. Cohn was out of the country so the Yianases were a little ambivalent yet it did seem that Theo was doing relatively well with his treatment.  Theo's daily infusion was ten hours long.  Some patients can not tolerate the amount of medicine given during that time so the infusion can be stretched out to twenty hours long, thereby giving less medicine per hour.  Theo tolerated it well enough to stay on schedule.

Theofanis was scheduled to be discharged on Friday, yet his temperature had not abated by the time his last infusion for the first round ended on Thursday night. Kosta was told that he would not be discharged with a fever and he really should have to be fever-free for twenty-four hours before discharge.  This meant they would not be able to leave until Saturday.  One of the doctors once told Eleni and Kosta that these discharge dates and times and restrictions can be negotiable -- so Kosta started to negotiate.  He finally received the go-ahead that if Theo remained fever-free that he would be discharged twelve hours from the last fever, or Friday afternoon.  It came to pass that Theofanis was fever-free after 2am Friday morning and so when Eleni arrived Friday morning, the Yianases prepared to leave the hospital at 3pm Friday afternoon.  Round One of Immunotherapy complete!

Dr. Cohn indicated that, unlike chemotherapy, there should be no lingering side effects from the Immunotherapy and that Theo should get back to normal after coming home.  It took a couple of days, but Theo was himself by Monday.  Routine blood tests later that week and next showed very good and normal results.

Theofanis is now scheduled to return to Comer this Sunday for another five days, back home for the weekend and back in the hospital the following Sunday for another five days at the end of March.  If all goes well, Theofanis will go back to school the first week of April as his 100-day isolation period ends on March 23rd.

As a side note, please look on the right side of this page and click on the video that was produced by Bear Necessities, a video that features several children battling cancer, including Theofanis.  The video was produced in December while Theo was preparing to go for his second stem cell transplant so he was in mid-treatment at the time.  Bear Necessities is a wonderful organization which provides fundraising opportunities to help with research, awareness and attention to the existence of childhood cancers, and comfort to the children and their families who fight and go through the experience.  This is a very moving piece that, should everyone view it, may just get enough effort to finding cures for these cancers.  Please view it and alert others to it. 


WITH FAITH, LOVE AND PRAYER HE WILL WIN
Theofanis started his antibody treatment on Clean Monday, the first day of Great Lent...
Like the other great feast days that marked milestones in Theofanis' chemo treatment and both transplants, we pray that God will continue to protect him....  A blessed Lent to all as we prepare for the Feast of Feast Days -- the Holy Resurrection.

As Theofanis' isolation period ends in eight days, he looks forward to attending church on March 25th, the Annunciation of the Virgin Mary.  He has said many times that he cannot wait to serve in the Altar again, as he misses everyone and his beloved St. Demetrios.