IN GOD'S HANDS

Relief, surprise, and fear fell upon the Yianas Family during these last very emotional seven days leading up to Theofanis' admission for his Stem Cell Transplant.  And, with an overload of test results and information that they needed to process, Eleni and Kosta had to make the most difficult decision of their, their son's and their daughters' lives. 

Since his discharge from Comer after being neutropenic from his last round of chemo, Theofanis slowly recovered his strength, regained some stamina, and started feeling more like himself with each passing day. The side effects from Chemo #6 were by far the worst he's had to deal with since diagnosis. Coupled with post-surgical pain and healing, he lost a significant amount of weight, too. There was a period where his parents contacted their nurse to request that Theo be placed on a TPN (IV nutrition), but when they found out that he would have to be re-admitted to the hospital for at least 24 hours, they retracted their request and doubled-down on forcing Theo to eat. They even bribed Theofanis to eat a banana in exchange for a $100 bill. It took nearly 30 minutes, but he ate it! With Carnation Instant Breakfast shakes, Theofanis regained about 4 of the 10 pounds he had lost. 

So with Induction Therapy over and Stem Cell Transplant and Isolation on the horizon, the Yianas family tried to get in a few Fall family activities that created a sense of normalcy for the family. They visited a pumpkin patch with cousins, enjoyed some carnival rides, and put in a round of indoor glow golf. They hung out with friends and family and celebrated Fall with the Tunney and Kics families, which has become a tradition over the past several years. Theofanis also served in the Altar at church and even was the youngest altar boy to slice the arto (blessed bread).

But the most exciting highlight of the past couple of weeks was his last soccer game of the season. He joined his team, the Blue Sharks, at an indoor field on Saturday. Theo hasn't practiced or played much this year (only 1/2 the games), and actually per the strong suggestions of his oncologists, shouldn't have played at all.  It was evident Theo was tired. He would run and quickly get tired. He'd raise his hand after a few minutes of field play asking his coaches for a break.  Although he ran much slower than usual, what didn't slow down was his passion to win. (Remember, in the first blog posting you learned that Theofanis likes to win.) So, with only minutes left remaining in the game, Theo put on his game face and kicked in the winning goal for his team!  SCORE! 2 - 1. He raised both his arms over his head, smiled and walked off the field. The crowd erupted in cheers and applause. Emotions were rampant. This child fighting cancer, who has undgergone six rounds of chemotherapy, a major surgery, and has tubes hanging from his chest, just got back a bit of his childhood. It was an incredible moment. And, it was a reminder for Kosta and Eleni that their son can do anything!

THE SPOT

Theofanis was scheduled for a full and complete battery of tests, scans and work-ups in preparation for his next phase of treatment in his battle against Neuroblastoma.  And, the results of these tests would dictate the next steps in his journey.  So over a period of two days, Theofanis underwent MIBG scans, CAT scans, blood tests, urine tests, organ function tests, scans for viruses, bacteria and fungus infections, an EKG, an Echo, an audiogram, a bone age test and a bone marrow biopsy. These tests would show if the cancer is gone or decreasing or spreading. And, these tests would show if he's ready to move on to the next phase of the COG (Children's Oncology Group) treatment protocol, which is Stem Cell Transplant. 

There was little doubt that the Theo's test results would not show improvement. His resected primary tumor had matured into benign ganglioneuroma cells.  The pathology report proved that the cancer was dying off. But, with cancer, there is always doubt and uncertainty. And as we all know, Neuroblastoma is unpredictable.  So, late last week, Dr. Cohn called the Yianas' with test results as they were coming in.  The MIBG scan (scan that lights up neuroblastoma cells) showed no uptake in the abdomen. The area where his primary tumor resided showed no Neuroblastoma cells. This was great news.  The MIBG also showed a significant decrease in uptake in the left elbow, the metastatic site where Theo's cancer was originally discovered. Dr. Cohn said it lit up just a "teeny weeny."  This was also good news. It would have been better if it was completely gone, but it's still news that the Yianas' were happy to hear. The CT scan of the abdomen also showed that there was no tumor left in the left adrena area. It showed some fluid in the area of the resected tumor which is consistent with surgery. The bone marrow biopsy was still pending. 

Then, Dr. Cohn proceeded to tell them that they found a "surprise".  She told Eleni and Kosta that the CT of his sinuses showed a tumor behind his left cheek bone that is 15 mm X 10mm. This tumor was undetected in any previous scans. It did not light up on any of the three MIBG scans Theo had. It did not show up on the intial bone scan either. Dr. Cohn proceeded to explain that tumors in the head are usually visible or show symptomatic signs. And since Theo had no pain, a CT of his head was never done before. Basically, they prefer to not radiate the head or brain if they don't have to. With this news of the newly discovered mass came the questions of (1) is it new growth or was it there from the beginning (2) are there active or differentiated cells and (3) how should it be treated? Dr. Cohn told them that she would need to consult with the radiologist, and ENT and other colleagues and would call them the following day. When Kosta and Eleni hung up the phone, Theofanis immediately asked, "What did Dr. Cohn say?" They told him that the cancer in his belly is gone and that only a teeny bit showed up in his arm. But they also told him that another tumor showed up on his cheek bone that they didn't see before and that Dr. Cohn thinks it was there from the start. Then, once again, Kosta and Eleni were reminded of how incredibly smart their little boy is. He said, "Why didn't they scan my head in the first place?" It was more a statement than a question. His parents and even Dr. Cohn agreed, that Theofanis was right.

So with this news, fear immediately settled in. It was difficult to accept the concept of another tumor having invaded Theofanis' body. And the fact that the tumor is so close to their son's brain was crippling for Kosta and Eleni. The next day, when Dr. Cohn called them with her recommended plan, she commented that we should all look at this as a blessing that it was found now, because this tiny tumor could have been the sight of a future recurrence.  And recurrence with Neuroblastoma is simply NOT GOOD. She expressed her concern that conducting a needle biospy on the cheek bone will not give us 100% guarantee that there are no active cancer cells. She consulted with radiologists, surgeons, oncologists and the Tumor Board at U of C. Firstly, there is agreement that the tumor most likely was there at initial diagnosis, but was not picked up by MIBG. (Some neuroblastomas are not visible on MIBG). Or, a theory that Eleni and Kosta have is that the cells were already differentiated or dead. Dr. Cohn said that it is highly unlikely that a new tumor would grow on the same side of the body where there is significant decrease in cancer cells (as shown in primary tumor and elbow). Still baffled by this newly discovered tumor, Eleni asked Dr. Cohn if she's had other patients who have experienced this situation. Dr. Cohn told her that she has not seen this before. She also told her that Theo has been different from the very beginning. Another confirmation that Theofanis is truly special. 

So, Dr. Cohn's plan is to be conservative and treat the tumor by either radiation or surgical resection. The ENT surgeon felt that surgery through the sinuses would be too difficult and there's no guarantee that the entire tumor can be removed. And it would be highly probable that the area would need to be radiated anyway. The Radiologist felt that he could radiate the tumor by going in from the sides of his head with the objective of staying clear of the brain. He would also radiate both cheekbones to avoid any future asymmetrical bone growth.  Eleni and Kosta still have many questions and want to consider all options, including proton therapy which delivers less scatter of radiation. But, in the meantime, Dr. Cohn's plan would be to proceed with the Stem Cell Transplant and treat his abdomen, elbow and cheek bone with radiation.

But even late last week, the clear plan of action was still not completely set. Theofanis is participating in a clinical trial. (Most children who are battling childhood cancers are on clinical trials.) This particular one, COG  ANBL0532: Phase III Randomized Trial of Single vs Tandem Myeloablative Consolidation Therapy for High Risk Neuroblastoma, is a current clinical trial that will either prove or disprove the belief that two stem cell transplants will reduce relapse in high risk Neuroblastoma patients. Patients who participate in this trial will be either randomized to either one or two stem cell transplants. Patients must have completed the 6 rounds of chemo, tumor resection, and show decrease in disease in order to participate in the trial. So, if the bone marrow biopsy result continued to show that it is still 100% clear of Neuroblastoma, then Theofanis' name would be put into a computer, and he would have a 50/50 chance of getting either one or two transplants. 

When Kosta and Eleni signed the consent form, they decided to do so with the strong belief that their son's cure is in God's hands. If Theofanis is randomized to one, it's God's will. If he's randomized to two, it's God's will. They do not know for certain which course of treatment is better for his long-term survival, and they do not know what effects additional treatment and toxicity will pose in the future. But what they are certain of is that they must stop this cancer now and do everything they can so that there is no recurrence.  They must do everything that they can to save their son's life.  And they must do it with God's strength and guidance.

So on Monday afternoon, the day before their scheduled admission for the Stem Cell Transplant, Dr. Cohn called and said that Theo's bone marrow was 100% clear. Then, her next call would be news of the randomization. At 5:45 pm, as Eleni pulled into the driveway of her home, Dr. Cohn called with the news that Theo was randomized to a tandem transplant. Not knowing how to react, Eleni was silent. Dr. Cohn told her to think about it. There was still time to pull out of the trial. She also told her she would send a paper that highlighted results of a separate tandem trial conducted by the Children's Hospital of Philadelphia and Dana Farber (Harvard). She said that there is a belief by researchers that two transplants show better survival rates than one transplant. it's not proven, though. Dr. Cohn told her that whatever she and Kosta decide, she will fully support them. As Eleni got out of the car, Kosta emerged from the garage to take Deme to volleyball class. Eleni looked at Kosta and held up two fingers. He stood still and silent. Neither said a word. They both had to think. They were thinking all night long....crying and thinking....crying, thinking and praying....

Theofanis is the first child in this study to do a tandem transplant at Comer. His transplant doctor, Dr. Cunningham (who came to the Glendi) has done multiple transplants before at St. Jude's Children's Hospital. After a long consultation with him the previous week, Eleni and Kosta felt that their son is in good hands. They have and continue to believe that they have put their son in the care of the country's top experts in Neuroblastoma and childhood cancer. Stem cell transplants pose risks. Doing two increases those risks. Eleni and Kosta have a natural concern that Theofanis would be the first child at Comer to do this tandem transplant. The drugs and dosage are different from the standard single stem cell transplant protocol, so Theofanis can not do one and then decide not to do the other.  If they agree to do one, there is no turning back. There are no guarantees that doing two transplants are better. But, many people believe that it is. Doing two stem cell transplants adds an additional 6 weeks of isolation and extends the length of his overall treament.  He may not be home for Christmas. He may have to celebrate his birthday in the hospital, apart from his sisters. These are just a few of the million thoughts that ran through their minds as they looked to make a decision on what to do. But, the one thing was crystal clear for them. If they made the decision to decline the two transplants and just do one, and if the cancer were to come back, Eleni and Kosta would hate themselves forever knowing that they had the chance to attack it with everything modern medicine could offer. So Eleni and Kosta made the decision to place their faith in God that He will heal their son with the path he was randomly picked for...two stem cell transplants.

The morning of Tuesday, October 18th, Theofanis and his sisters gave their good-bye hugs to each other as they set off for school.  In the afternoon, Theo was admitted to Comer Children's Hospital. On Wednesday, October 19th, Theofanis began his tandem stem cell transplant journey. 

The You Tube link below will take you to a video clip of Theofanis' room where he'll be getting high dose chemotherapy, where he'll be receiving back his own "super" stem cells, where he'll be spending the next four weeks in isolation, where he'll be fighting off fevers and infection, and where he'll essentially undergo a rebirth of all his cells!

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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.

A Sincere Thank You!

Mr. George Nassis
Chairman, "Taste of Greece"

Fall Glendi 2011

St. Demetrios Greek Orthodox Church

Elmhurst, IL

Dear George,

From the bottom of our hearts, we wish to thank you for the time, effort, and hard work you have demonstrated in successfully organizing and executing what was simply a brilliant event.  As chairman, you quickly assembled and arranged a wonderful group of people, adroitly delegated where necessary, and followed through in every department during the event.  So many people came up to us with effusive praise for our Parish and marveled at how a community can come together to show the love and devotion for their children.

We all must take a moment and truly consider what was accomplished this past weekend, not only for the worthy cause of creating awareness for childhood cancer, and, specifically, for Theofani, but also for the fact that, as a Parish, we can genuinely work together to carry out God's will and work together for each other as a family.  Not only was it one of the greatest events in our Parish's history, but we would offer that it was a time that will stand forever in our collective Greek Orthodox community in Chicago and nationwide.  All others, going forward, can recall your efforts and what was achieved as a shining example of all that is good and virtuous.  It is our hope that all will take this example and make it a precedent of future endeavors.

Our thanks also to Father Andrew and Presbytera who have tirelessly supported us through this and who worked so hard along with you to make this event successful.  Thank you also to the committee chairpeople and all the incredible volunteers for their time and devotion.  As we noted on stage Saturday evening, there are no better parishioners than ours at St. Demetrios, and it shone no brighter than at the Glendi.  We can't tell you how many visitors to our Parish felt and said the same thing.  Further, we would like to thank Dimitri Pagonis and the Parish Council for their leadership and Dominick Vassos, who co-chaired this event, for his help and hard work.

Our heartfelt thanks again to you, George, and to all who have helped our Theofanis and others fighting cancer, strenghtening their resolve.  Thank you also for strengthening our Parish and family of St. Demetrios and making it a wonderful example and shining beacon of unity and love for our entire Diocese.

Sincerely,

Kosta and Eleni Yianas

TUMOR REMOVED!

At 6:30 am this morning, Theo was admitted into the pre-op staging area on the 3rd floor of Comer Children’s Hospital where he was prepped for his operation to remove the primary neuroblastoma tumor that engulfed his left adrenal gland.  He was weighed and then examined by four nurses, two anesthesiologists, and two doctors.  He changed into a surgical gown, he selected bubble gum for his sedation mask flavor, and his abdomen was signed.  He politely declined the oral pre-sedative that would help calm his nerves, and announced that he would walk to the OR on his own.  At the entry way of the surgical wing, his parents hugged and kissed him, assured him that they would be near by, and promised that they would be with him when he woke up.  Kosta and Eleni watched Theo walk away towards the operating room holding his plush Cross with the words “Health” embroidered on it, escorted by the two anesthesiologists.  And when the two large steel doors slowly closed in front of them, and their son disappeared from view, Eleni and Kosta felt stunned and petrified and could no longer control their emotions.  They slowly adjourned to the waiting room where they anxiously awaited the hourly progress updates that they were promised.  And as they settled into their chairs, Dr. Liu briefly came by to meet with Eleni and Kosta and answer any of their last minute questions.  Everyone was in agreement that the game plan was simple:  Get all of the tumor out, preferably laparoscopically. 

The operation began at 8:30 am. As each hour passed, Eleni and Kosta’s worries became that much more unbearable.  Would the team be able to get all of the tumor out?  Could Dr. Liu avoid an invasive procedure?  Was Theofanis alright?  Updates came every hour...sometimes by phone, sometimes by nurses that emerged straight from the OR.  At each update Kosta and Eleni were assured that Theo was doing well and that he was strong. They were told the procedure was progressing, and they were told that Dr. Liu was taking his time. He was taking it slowly.  Why?  Was something wrong?  With every passing hour, from the first, to the second, to the third, to the fourth and to the fifth hour into surgery, the fear that something was terribly wrong hovered in their minds.

Finally, at 2 pm, an OR nurse came into the waiting area and told Eleni and Kosta that the tumor was out and Dr. Liu was finishing up!  She explained that it was a much more complicated procedure than anyone initially thought.  When Dr. Liu went in, he discovered that the tumor had wrapped itself around the aorta and all the major abdominal blood vessels and veins.  It was a very difficult maneuver to reach and cut out all the tumor cells while protecting the critical vessels in his abdomen. Yet, miraculously, Dr. Liu was able to resect the tumor completely and he did it all laparoscopically!  Minutes later, Dr. Liu came out with color photos of the tumor and he explained to Eleni and Kosta exactly what he did. He said, “It was a tough one.” And, he even apologized that it took so long! No apologies necessary!  He was able to chisel out the tumor which had surrounded critical vessels, did not harm any existing organs or other structures, kept Theo’s well-being at the forefront, and did this through the aid of scopes and no major incision.  And, as the nurse said, when it got tough, Dr. Liu didn’t give up. He continued on instead of resorting to traditional invasive surgery.  Dr. Liu is truly amazing!  In joy and relief, Eleni hugged him and the head nurse, too. 

Another amazing aspect of this laparoscopic surgery is that Theo lost no blood during the operation. (Again, another benefit towards a faster recovery.) But as the anesthesiologists were keeping close tabs on Theo throughout his nearly 6 hours of sedation, they decided to give Theo a red blood cell transfusion because his hemoglobin was a little low. Post surgery, his counts were strong. But, taking into consideration that the surgery was complicated and took a long time, Dr. Liu decided to transfer Theo to the Pediatric Intensive Care Unit for his post anesthesia recovery for at the very least a 24 hour observation. 

When Kosta and Eleni arrived at the PICU, they were exalted to see their little boy.  Although he had tubes in his nose that ran down his throat into his stomach, an oxygen tube, and a catheter, Theo was resting comfortably.  He was still groggy from the heavy sedation, and they sat and waited for him to wake up. They were warned that he would have a lot of pain when the anesthesia wore off and that there are open orders to administer morphine. But the fact that he only has 3 small pieces of surgical tape on his belly and one strip over his belly button (smaller than a pinkie band-aid), they felt re-assured that Theo’s stay in the PICU would be short.

As the afternoon turned to evening and evening turned into night, Theofanis remained asleep, obviously very exhausted from the surgery, groggy from the anesthesia, and probably uncomfortable with the stomach tube which made him unable to swallow. So, under constant observation in the PICU, his body has started to heal. His temperature is slightly elevated (expected), his abdomen hurts (expected), his breathing is a bit labored (expected), and he drifts in and out of wakefulness (expected).  

At 9:00 pm, Father Andrew Georganas visited the PICU to bless Theofanis. He offered a prayer to God for not only his recovery, but also to the doctors, nurses who were instrumental in his progress towards full health.  He anointed him with holy oil, and it was evident that Theofanis was comforted by Father Andrew’s familiar and loving voice. Eleni and Kosta thank Fr. Andrew and Presbytera Dimitra for their constant love, support, and prayers.

So, what’s next? If all goes well, Theo will be moved to the 6th floor of Comer tomorrow as he continues his recovery from surgery.  Dr. Panigrahi, one of Theo’s oncologists, had his Chemo #6 orders ready to go as soon as Theo was rolled out of the operating room. Happy with Dr. Liu’s amazing work, Dr. Panagrahi expects that Theo will begin his 6th round of chemotherapy on Monday, which will then signal the end of the first phase of Theofanis’ four phase treatment plan.  Also, the resected tumor will be sent for pathology testing.  The doctors should know by the end of next week whether the tumor is necrotic and whether the tissue surrounding the tumor, the marginal area, has any evidence of neuroblastoma cells.  Eleni and Kosta are praying for a necrotic tumor and negative presence of other cells in the marginal tissue.

THE POWER OF PRAYER       

Thank you to all who have sent their best wishes and prayers on behalf of Theofanis.  We are all very fortunate for your friendship at this time.  Thank you to Dr. Liu and his staff at the U of C.  The tumor is finally out and that is now a prayer that has been answered.  Thank you, O Heavenly Father! Love, Eleni and Kosta

GET THE TUMOR OUT!

Theo has earned over 200 Courage Beads!

SURGERY TO REMOVE THE TUMOR

Tomorrow morning, Thursday September 15^th at 6:00 am Theofanis will arrive at Comer Children’s Hospital and be prepped for surgery to remove the primary tumor located on his left adrenal gland. Dr. Donald Liu, Surgeon-in-Chief, will be resecting the cancerous cells from his abdomen. The Yianas Family is asking everyone to say extra special prayers for our brave Theofanis. Please pray that God grant Dr. Liu and his surgical team the ability to safely and completely remove every single neuroblastoma cell from Theo’s abdomen. Please pray that God grant Theofanis the strength to heal and recover from the surgery quickly and comfortably. Please pray that God console Theo’s fears and replace them with reassurance that he is getting better. And please pray that God protect Theo tomorrow and always.

KEEPING HIM HEALTHY AND STRONG

Eleni, Kosta and Theo met with Dr. Liu last week to go over the surgical plan. Since Theofanis’ platelet level last Tuesday (September 6th) was 44 and shy of the 100 count that would allow him to be ready for the tumor resection, Dr. Liu had to wait to lock in a surgery date until his counts fully recovered. The one thing that Dr. Liu confirmed was the date of his next blood test, and the other thing Dr. Liu was insistent on was, “Keep him away from germs.” So no school, no soccer, no outings. But how do you keep a six year old boy, who by the way is feeling great, in seclusion? The answer is…you can’t.

Eleni and Kosta tried their hardest to keep Theo away from the nasty bugs that could compromise his immune system. As daily emails were coming in from the school nurse and supportive parents letting Kosta and Eleni know that their kids were fighting off colds and fevers and coughs, etc., it was clear that Theo wasn’t going to school. Instead, he kept up with homework sent home by his teachers, he read books, and generally kept busy during the day while his sisters were at school. Speaking of Demetra and Sophia, as each of them independently came home from school with slight sniffles and sneezes, the task at hand became keeping them a good distance away from their brother. So, how do you keep loving siblings away from each other? The answer is…you can’t.

Knowing that Theofanis’ white blood cell count was a low 1.3, Eleni and Kosta had to balance the “No, sweetheart, you can’t go…” statements with “Ok, let’s go for a little bit…” Because for as much as it’s important to keep his immune system strong and healthy, it’s as important to keep his emotional wellbeing at it’s highest point. So, Theofanis visited his friends’ “Fight Childhood Cancer” lemonade stand in Elmhurst, hung out with his cousin for a little bit, squeezed in a few quarters at his soccer game on Saturday, visited the eye doctor for a checkup (eyes are good and healthy, by the way), and he went to church and served in the Altar on Sunday.

Thankfully, Theofanis was able to stay healthy and relatively happy! It wasn’t until a few nights ago when he told his parents that he’s scared about the surgery that Kosta and Eleni were reminded about how valiant their little boy has been through every step of his cancer treatment.  And they were also reminded of how smart their little boy is because he inherently understands how critical it is to get the tumor out of his belly.

THE SPOT

On the eve of Theofanis’ surgery, the Yianas family is nervous but yet anxious for this milestone in Theo’s recovery. There will be a sense of relief that the origin of those nasty neuroblastoma cells are finally out of his body. Plus, the tumor that they remove will provide them with answers to many of the questions that have been haunting them. Is the chemo working? Is the cancer being killed? Are there any prognostic indicators? In addition to getting more information on the genetic makeup of the neuroblastoma, the pathology analysis is a critical step in understanding how the cancer cells are reacting to the chemotherapy. Plus, the results of that report will likely be indicative of what's happening in the tumor in his elbow.

Kosta and Eleni desperately want to know what's going on in their son's body because as of now, they have not had any absolute confirmation that the cancer is dying. The CT scan that was done last Tuesday showed no significant change in size of the tumor. This was a blow to Eleni and Kosta. As tears fell from their eyes last Tuesday when Dr. Liu told them that the tumor did not shrink, they tried to refocus on the positive news that (1) the tumor did not grow and (2) no new tumors appeared. And in the days that followed, separate calls poured in from Dr. Cohn and Dr. Panagrahi who understood the worry Kosta and Eleni carried. They told them to not be too concerned and that the purpose of CT scan is to give data and direction to the surgeon. The doctors told them to concentrate on the clinical signs that Theo's arm no longer hurts. And, they were told that there may be signs of calcification on the tumor, which would be a good thing.

Last Tuesday's disappointing CT scan, however, did not overshadow the good news that Dr. Liu delivered to Eleni and Kosta. Dr. Liu annouced that his plan is to remove Theo's tumor laparoscopically! Eleni and Kosta were amazed and shocked.  And actually, they were not the only ones surprised because Theo's oncology team was thrilled to hear the news as well!  Resecting the tumor laparoscopically means that it’s less invasive, there's lower risk of infection, faster recovery, and no ICU!  Dr. Liu explained that his plan is to make two small incisions in his belly and remove the entire tumor in one piece through his belly button! Amazing! He then warned that depending on what he sees inside, there may be the need to resect it via traditional surgery. But, he assured them that he would do his best to get the tumor out laparoscopically. God, please grant Dr. Liu and the surgical team strength and wisdom to make the right decisions, and please bless the hands of his surgeon so that the tumor is removed safely and completely.

Chemo #6 will immediately begin as soon as Theofanis recovers from his surgery.

WITH LOVE FAITH AND PRAYER HE WILL WIN

On this day, the Elevation and Exaltation of the Holy Cross, Saint Helen, the mother of Saint Constantine, found the Holy Cross upon which Jesus was crucified.  The Holy Cross provides the strength upon which to carry us through both difficult and joyful times.  We are thankful that Theofanis was able to attend today's liturgy, the day before his operation.

As preparations are in full swing for the Saint Demetrios Greek Orthodox Church Fall Glendi and fundraiser on September 24th and 25th in Elmhurst, the Yianas family continues to feel blessed by the love and support that is pouring in for Theofanis.  The Glendi will benefit Theofanis and raise awareness of childhood cancer. Many family and friends at Saint Demetrios are contributing their time, talents, and donations for this event to be a success.  The community support is genuinely something to marvel and truly provides comfort and encouragement to the Yianas family with every card, good wish, thoughtful deed, kind note, and, especially, fervent prayer.

There are many fun, family-oriented events scheduled for next weekend. In addition to the food, music, dancing, talent show, crafts and games, there will be an emphasis on raising awareness of childhood cancer. On Saturday, September 24th at around 5:30, doctors from Theofanis' oncology team from the University of Chicago will be at the Glendi and will speak about Neuroblastoma and the research they are conducting to find better treatments and to bring us closer to a cure. Dr. John Cunningham, Section Chief of the Department of Pediatrics for the University of Chicago, Dr. Panigrahi and Dr. Pinto are planning to attend, along with others. Dr. Cunningham is also the head of the Stem Cell Transplantation group and will oversee Theofanis' stem cell transplant when he reaches that milestone.

Also, throughout the day on Saturday there will be head shaving and hair cutting for Pantene's Greath Lengths Hair Donations.  A dear friend of the Yianases will be donating $10 for the first 50 heads shaved/cut.  Many others are getting sponsors for their own head's shaving, too. Please be sure to sign up if you are planning to shave or donate hair during the Glendi. Demetra and Sophia have already made their appointments!

So, the Yianas family hopes to see you next weekend in Elmhurst! The plan is that Theofanis will have just completed his 6th round of chemo and he will be able to attend the Glendi with his family. And, on Sunday, September 25th, Kosta and Eleni invite you to attend the Saint Demetrios Divine Liturgy during which the Artoclasia, the blessing of the five loaves, will be celebrated for the health and well being of Theofanis, his family, and all his wonderful friends that are alongside him during his journey towards full recovery!

The love that the parish has for Theofanis and his family is more than evident, more than obvious, it is gleaming.  As mentioned, emotional well-being is paramount, and Theofanis could not have a better support system.   

September is Childhood Cancer Awareness Month.

The Yianas family, along with their friends, family and entire church community is rallying to bring visibility to the thousands of courageous children who battle pediatric cancer, including their own much loved warrior, Theofanis.

By observing Childhood Cancer Awareness Month, you will become an advocate for the brave children who are unfairly stricken with this disease, their families who unceasingly fight alongside them, and the support organizations that provide compassionate assistance to patients and families.  And very importantly, you'll bring awareness to desperately needed and under-funded research programs whose ultimate goal is to eradicate childhood cancer forever. So, please observe Childhood Cancer Awareness Month and show your support for Theofanis by proudly wearing your THEO bracelets each and every day!

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

Several weeks back, the Yianas family received a call from Father Andrew Georganas with news that the Saint Demetrios Parish Council unanimously voted to host the 2011 "Taste of Greece Fall Glendi" for the benefit of our beloved Theofanis. They lovingly and graciously announced that all the net proceeds from the event will benefit Theofanis' fight against Neuroblastoma. The event will be held on Saturday, September 24th and Sunday, September 25th on church grounds in Elmhurst.  Humbled by their church's generosity and immensely grateful for their support, Kosta and Eleni have established The Yianas Family Fund to help defray medical costs and most importantly, make donations to Neuroblastoma research for finding better treatments and ultimately a cure! 

So to all the wonderful friends and family, and to all the volunteers who are giving their time, talent and effort to this event, you are doing more than raising awareness of childhood cancer, you are bringing hope and comfort to Eleni, Kosta, Theofanis, Demetra and Sophia. You are helping answer their daily prayers that a cure can one day be found!

THE SPOT

Theo's recovery after Chemo #5 has been fairly good. The first few days after coming home, he dealt with some nausea, vomiting and stomach pains.  He was taking three different anti-nausea medicines in two-hour increments around the clock. This made him extremely tired and weak.  But as the nausea waned, Eleni and Kosta slowly took Theofanis off the medication and were carefully monitoring for any signs of a fever. His counts were stable, then drastically fell as he entered the 7-10 day critical point where he was neutropenic. His body managed to fight and his temperature managed to stay below 99.5, but his counts lunged low to the point where he made two visits to the hospital for blood transfusions. On Tuesday, he went to the SPA for red blood cells and then on Thursday he went in for platelets. With some aches and pains in his tummy and some sniffles throughout the week, needless to say, Theofanis was not able to be in school much. Theo did go to his first soccer game of the season when his counts were stable. His energy was expectedly low, but he still played very well.  It continuously amazes his parents that, except for his hair loss, it is hard to tell that this beautiful child is enduring such a great burden that so many would shudder to accept.

Theofanis is scheduled for a CT scan on Tuesday, in preparation for his upcoming surgery. The scan will focus on his adrenal gland near his left kidney, where the primary tumor is located.  Eleni and Kosta's fervent and constant prayer is that the scan will show that the chemo treaments have reduced the size of the tumor and that it can be completely resected. Eleni and Kosta will then meet with Theo's surgeon, Dr. Liu to review the surgical plan to remove whatever remaning cancer cells of the primary tumor. Theo's surgery date will then be confirmed. Dr. Liu implanted Theo's central line in his chest, and Eleni and Kosta have much confidence in his experience and ability.  After Theo recovers from the operation, then he can begin Cycle #6 at Comer.

 

THEO HAS BEEN SMILING!

 A stranger sent a smile in the mail this week, and a few friends are squeezing some lemons this weekend...all for Theo. 

A package arrived in the mail from an unfamiliar address in Missouri. It contained two "Happy Hats" and a note that read, "I said a prayer for you while I made this and I wanted to put a smile on your face today. I hope it helps to know that a stranger is thinking of you and hoping that you get better soon. -Kathy" So, to Carol Chiligiris' friend, Kathy, who heard about Theo's fight against Neuroblastoma, thank you for putting a smile onto Theo's face. He especially loves the Angry Birds hat! His sisters love them, too!

A few 3rd grade girls from Emerson Elementary School in Elmhurst decided to set up a lemonade stand in honor of Theo. Not all the girls know Theo, but they want to help him fight cancer, nonetheless. So, stop by the corner of Fay and West Avenues in Elmhurst for a glass of lemonade. Be sure to tell Lea P., Georggia S., Maya R., Olivia Q., Arianna C. and Kayla R. that they are kind and good friends. Tell them that you are proud of them, too. Because that's what Theo and the Yianas family plan on doing Saturday when they visit the girls' lemonade stand!