INDUCTION THERAPY DONE

THE END OF CHEMO #6 MARKS THE END OF THE FIRST PHASE OF THEO’S CANCER TREATMENT.

The tumor is out. Induction Therapy is over. The Pathology Report Came in.

It’s been an incredible past two weeks of thumbs up days, thumbs down days, and even double-thumbs up days. And for mom, dad, and everyone who has been following Theofanis’ journey, there were finally some tears of joy and a breath of relief that emerged through the fear they continue to carry as Theo fights Neuroblastoma.

THE SPOT

Four days after undergoing surgery to remove the tumor in his abdomen, Theo began his sixth round of chemotherapy. After his nearly six hours in surgery, Theofanis he had a short stay in the intensive care unit and a couple of days of recovery on the 6^th floor of Comer.  As he slowly regained his strength and the surgical team gave the ok, the oncology team sprang into action, wrote the orders, and the chemo bags arrived on Monday.

Theo’s six round of chemo mirrored the fourth round precisely and was done over a period of four full days:

• Chemo Day One @ 7pm:  Vincristine (quick injection), Cytoxan (6 hour infusion), Doxorubicin (24 hour infusion)
• Chemo Day Two @ 7pm:  Vincristine (quick injection), Cytoxan (6 hour infusion), Doxorubicin (24 hour infusion)
• Chemo Day Three @7pm: Vincristine (quick injection), Doxorubicin (24 hour infusion)

The constant flow of Doxorubicin in combination with the other medicines drained Theo's energy. Although his surgery was laparoscopic, he still had some abdominal soreness from the five pokes he had on his tummy.  While he was getting chemo, he also was getting post-op therapy. The Physical Therapist focused on helping Theo walk, regain his balance, and straighten his posture caused by being hunched in bed as he “protected” his surgical area.  The respiratory therapist came by twice a day also to help him with breathing exercises and massages as Theo suffered a partially collapsed left lung.

Theofanis’ appetite took a roller coaster ride as well. First he wasn’t allowed to eat until there were signs his digestive tract was “waking up” after surgery. Then, he was put on a liquid diet. Then, he got hungry and started eating solid foods. But once chemo started, his appetite fizzled and his sense of smell and taste had again changed.  So, as usual, Theo refused hospital food and would not eat much of anything else. 

This hospital visit was proving to be especially trying on little Theofanis. The Wii System sat idle for days, his backpack and homework weren’t touched, and even his Lego sets were mostly assembled by mom and dad. And, visits by his sisters were minimal, too. With school in full swing, Demetra and Sophia were unable to make daily visits to see their brother as they used to in the summer. And as Eleni and Kosta desperately tried to encourage him to do things, they quickly realized that the one true motivator for him was his beloved church’s upcoming Fall Glendi. They posted copies of the Glendi flyer throughout his room and the 6^th floor of the hospital. “Theofanis, you need to eat so that you can be strong enough to go to the Glendi.” “Theofanis, you need to stand up straight and balance on one leg so that you can go to the Glendi.” “Theofanis, you must blow all the air out of your lungs so that you don’t get sick so you can go to the Glendi.” “Theofanis, you are an incredible little boy! You are going to the Glendi!”

As soon as the chemo bag ran dry on Thursday evening, Theo’s discharge papers were signed, and he was on his way home, one week after that cancerous “beast” was removed from his abdomen.

THE LONG-AWAITED PATHOLOGY REPORT 

The instant Eleni and Kosta were told that the primary tumor was successfully and completely resected, they immediately asked, “when will we receive the Pathology Report?” The tumor that Dr. Liu removed--this “beast”--is not only the cause of Theofanis’ suffering and the reason Theofanis is fighting for his life, but it’s also the main source of information that will help doctors confirm his next course of treatment and give Eleni and Kosta some insight into what their son’s future may possibly hold.

To help explain the results of the Pathology report and what it means, there are a few things about Neuroblastoma that people need to understand. Here’s an attempt to explain what Neuroblastoma is…

Neuroblastomas are cancers that start in early nerve cells of the sympathetic/autonomic nervous system. Theofanis’ nuroblastoma started in the nerve-like cells in the medulla (center) of his left adrenal gland. These cells develop from cells in the fetus called neuroblasts. Neuroblastomas develop when normal fetal neuroblasts fail to mature into normal ganglion nerve cells or adrenal medulla cells. Instead, they continue to grow and divide. Some Neuroblasts in young infants can eventually mature into normal ganglion nerve cells or simply disappear. However, as children get older, it becomes less likely that these cells will mature and more likely that they will continue to grow into a cancer. By the time neuroblastomas are large enough to be felt or cause symptoms, most can no longer mature on their own and will grow and spread unless treated.

There are essentially three subtypes of tumors associated with the sympathetic nervous system:

1. Neuroblastoma, consisting of highly malignant, cancerous cells which spread and grow.

2. Ganglioneuroma, a benign (non-cancerous) tumor made up of mature ganglion and nerve sheaths.

3. Ganglioneuroblastoma, a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, similar to neuroblastoma, as well as areas of more mature tissue that are similar to ganglioneuroma.

Theofanis was initially diagnosed with the Ganglioneuroblastoma subtype as his tumor showed both malignant and benign cells. Because Ganglioneuroblastoma contains active cancerous cells, because his tumor spread to his bone, and because he is six years old and considered “older,” he was designated as Stage IV, high risk. There is a wide spectrum of how neuroblastomas can behave. They are simply upredictable and there are no definitive prognostic factors.  That is one of the most frightening aspects of this disease.

So, now back to the much anticipated pathology report….

Nearly a week later, Dr. Arun Panigrahi delivered the results to the Yianas Family.  Kosta was with Theo in the hospital room. Eleni was enroute to Comer after dropping the girls off at school.  Eleni instinctively called Kosta who told her that Dr. Panigrahi was there with good news. The tumor's pathology analysis showed no active neuroblastoma cells!  The once cancerous neuroblastoma cells  are now completely differentiated and have matured into ganglioneuromas which are benign and no longer spread or grow! The tumor had responded to the chemotherapy!  This was the news that Eleni and Kosta were desperate to hear…The news that they constantly prayed for…The news that brought tears of cautious joy and relief…The news that allowed them to take a breath for the first time since May.  Dr. Panigrahi continued to report that they saw some residual tumor cells in the peripheral tissue. These cells also matured into Ganglioneuromas.  Still, no Neuroblastoma!  And as Eleni and Kosta continued to reiterate the news, “No active neuroblastoma cells, right? They found none, right? The chemo is working, right?” Dr.Panagrahi confirmed that this was truly a good thing! 

Even though Dr. Liu completely resected the tumor and removed as much of the surrounding tissue that he could without compromising the aorta or arteries, there is a possibility that there are still ganglioneuromas in his abdomen which may light up during his next MIBG scan. Also, there is a likelihood of microscopic neuroblastoma cells remaining in the bloodstream.  As mentioned before, Neuroblastoma is unpredictable, and this is why Theo must continue on with the remainder of his cancer treatment, namely, the stem cell transplant next month, radiation in the winter and antibody/immunotherapy treatements next spring.  These different modalities should "mop up" any residual Neuroblastoma cells that may be hiding and are at risk of spreading. Eleni and Kosta’s concern then quickly turned to the tumor in Theofanis’ left elbow, which will not be surgically removed. Dr. Panagrahi explained that there is a very high likelihood that the neuroblastoma cells in his elbow have had the same response to the chemo and have also differentiated and matured into ganglioneuromas. The doctors also believe that the tumor in his arm is shrinking because x-rays show healing in the bone and Theo has no elbow pain. Again, Eleni and Kosta were cautioned that the elbow may also light up during Theo’s upcoming MIBG scan, but hopefully with much less intensity.

Later that afternoon, Eleni and Kosta met with Dr. Cohn who re-confirmed the pathology report and the good news. With Dr. Cohn in the room, Eleni and Kosta turned to Theo and told him, “Sweetheart, the cancer cells in your belly are gone. Mommy, Daddy and Dr. Cohn are very happy because Dr. Liu got out the tumor and the cancer cells are not there any more.  Mommy and Daddy are happy and we are so very proud of you! Now, on to making your healthy cells healthier!”

With caution and a bit of uncertainty as to what the upcoming scans will show, Eleni and Kosta felt it necessary to let their son know that his battle has brought him some victories, even though he still has a long road ahead. No one is certain whether the next round of scans will show NED (No Evidence of Disease) or whether it will show some residual ganglioneuroma or even neuroblastoma cells, but what is certain is that the Yianas family was given a reason to celebrate! And what better way to celebrate than with all the people who have shown so much infinite love and support to them. Off to the Glendi!!!!!

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

  Theofanis is a little boy who has an incredible amount of love for his church. Even before his diagnosis, the church was a place of comfort and security, a place of learning, and place where many people expressed attention for his well-being, development and spiritual growth every day. In early August the parishioners of our beloved church, Saint Demetrios of Elmhurst, wanted to do something for Theofanis as he battles Neuroblastoma. In addition to all the support and love that everyone has given him and his family, the Parish Council voted to sponsor and organize their Annual Taste of Greece Fall Glendi to Theofanis’ battle against Neuroblastoma, dedicating all net proceeds to his fund and raising awareness of Childhood Cancer. Under the leadership of George Nassis, chairman of the event, Father Andrew and Presbytera Dimitra Georganas, a beautiful idea and sentiment became a reality in a very short amount of time as the Fellowship Hall and church grounds transformed into an Autumn Wonderland! The Taste of Greece Fall Glendi welcomed friends, family, and supporters from all over Chicagoland!

It was a fun, inspiring weekend for young and old alike: There was fabulous food, sweets and loukoumades! Outdoor games, pony and wagon rides. Pumpkin decorating, face painting, and crafts. A spectactular talent show that entertained with performers earning standing ovations! A star-studded celebrity meet & greets featuring Steve McMichael, Dan Hampton and Jimmy Piersall. An incredible silent and live auction featuring unique, creative and luxurious prizes from Hollywood treasures to coveted sports events and wine and dine adventures. Head shaving and Pantene Great Lengths Hair Donations brought kids and adults of all ages to show their support of the many heroes who are battling cancer. Music and dancing added a festive vibe. The Saint Demetrios Taste of Greece Fall Glendi raised awareness of childhood cancer and the need for research, and honored the brave warriors like Theofanis who are fighting for their lives.

The Yianas family felt honored to be able to attend this incredible event. And with the fantastic news they received from the pathology report just a few days earlier, the Yianas family was eager to share their happiness with their entire family of Saint Demetrios. And, they were thrilled that Theofanis himself was able to attend and witness the outpouring of love for him. Although he was tired and still recovering from the effects of surgery and chemo, he displayed stamina throughout the event and refused to go home. He quietly rested in Father Andrew’s office when he felt worn out. But, Theofanis loved seeing everyone he has known and loved throughout his young life.

On Sunday, the Yianas Family sponsored the Artoclasia during the Divine Liturgy. The Blessing of the Five Loaves was for the health and well being of their entire family. With sweet and emotional words echoed by Father Andrew, Kosta and Eleni felt incredibly blessed and thankful. It was a beautiful closing to a wonderful weekend…a weekend that brought smiles to their faces, hope to their hearts, and thankfulness for the gifts that God has bestowed upon them.

The Yianas family would like to thank Father Andrew, Presbytera, George Nassis, the Parish Council, the committee chairpersons, Father Panayioti, all the fantastic volunteers, aunts, uncles, cousins, koumbaroi, friends, and those who came out to support Theofanis this past weekend.  Thank you for your extremely generous donations, for your time, your support and for your constant prayers. To all, you have become our family!  You all have cried with us along this journey, and we were honored to be able to celebrate with you this past weekend! We continue to pray for many, many more celebrations to come!

RAISING AWARENESS

In August, the Yianas family had an opportunity to talk about Theofanis and create awareness for Neuroblastoma on a national level.  Kosta was interviewed by The Orthodox Christian Nation for one of their radio/pod cast talk shows, Come Receive the Light, hosted by Father Chris from Ft. Lauderdale, FL.  The interview aired in September during Childhood Cancer Awareness Month.  To hear the interview, go to www.myocn.com and click on their Come Receive the Light program link.

RECOVERY FROM CHEMO #6 SENDS THEO BACK TO THE HOSPITAL

It was obviously a busy weekend for the Yianas family with the Glendi, the Artoclasia, and even a family wedding on Sunday where they celebrated the marriage of Bill and Zehenia Mourousias, their symbetheroi. Theofanis’ counts held up strong during the first few days past chemo. He was tired, rested when needed, but it felt good getting out of the house. Even his brief appearance at the wedding to pose for a family portrait brought a smile to his face. He was able to stay strong and fight off any threat of viral or bacterial infections! But, there are some things that Theofanis nor his parents can fully control, and those are the side-effects from the chemo drugs.

Theofanis was admitted to Comer Children's Hospital a few days ago and is in an isolation room suffering from post-chemo side effects which include a fever, jaw pain and mucositis which are sores that can go from the mouth down through the stomach. These were the same symptoms he suffered when he was neutopenic from his 4^th round of chemo. He is being treated with morphine, has already had a red blood cell transfusion, a platelet transfusion, and is on antibiotics as a profilactic against a bacterial infection. The trip to the ER was expected, but brave Theofanis fought hard against it. He was 11 days out from chemo when his body could no longer fight the effects from this particularly rough drug combination. (Last time, he was back at Comer within 7 days.) Although he is uncomfortable, Theo is resting and patiently waiting for his counts to recover so he can go home. But, his spirits perked up significantly when his sisters visited today. Plus, his dad brought ice cream from home! While at Comer, Kosta and Eleni have started to meet with the Stem Cell Transplant team to begin discussing Theofanis’ next phase of treatment. It is scheduled for Tuesday, October 18^th.