PLEASE PRAY!!!

THE SPOT

Since being released from the hospital after his first round of chemo, Theofanis has been in great spirits, very active, and pretty happy. On Monday morning, Kosta woke up at 6:00 am to check his temperature. We were told to expect his blood counts to drop around 7 - 10 days after chemo. We were told to call the doctor if his temperature exceeded 100.4 degrees F. At 6:00 am, his temperature was over 102. We triple checked it with every thermometer in the house. His temperature was definitely over 100.4 and he felt warm to the touch.

When Theo arrived at the emergency room at Comers, he was given a broad spectrum antibiotic called Ceftazidine. The nurse also drew labs which confirmed that Theofanis' White Blood Count was 0.2 (nearly zero), and that he was neutropenic. Theofanis was admitted to the hospital.

It breaks your heart to see a six year-old boy look so sad.

Theofanis will be in the hospital for 48 hours, at the very least, and he will be given an antibiotic every eight hours. The doctors need to determine the source of his fever. His blood cultures will be ready on Wednesday and that will tell us if he has contracted a bacterial infection. His blood counts will be checked again on Wednesday, too. Please pray that his fever goes away quickly and that his WBCs rebound quickly.

COURAGE

Chemo Cycle #1 is DONE!!!!!!

Theofanis spent five days at Comer Children's Hospital at the U of C for his first cycle of Chemotherapy.  He was in room 602.  He met a lot of folks---so many in fact, that neither he, nor mom, nor dad could remember everyone's names.  We asked people to "sign in" as they came into his room.  There were his nurses:  Abby, Courtnay, Marlito, Amy, and Mike.  There was Dr. McNeer, Dr. Muller, Dr. Panigrahi, Dr. Haydon, Dr. Cunningham, and Dr. Cohn (of course).  There was another doc who ran out of business cards, so we'll catch his name next time.  And, we can't forget the entourage of Residents that visited Theo daily. There was also Bonny, Erin, Amy, Patty, Emily, Stacy--the  Comer team who will be helping us along the way. We got a lot of information, booklets, and binders on Neuroblastoma, treatment, cancer support groups, nutrition,  and the list goes on.  We stayed up til 4 am one night just organizing documents into three separate 3-inch binders. (Yes, they are color-coded for those of you who know about Eleni's OCD for organization).

It was pretty quiet at the hospital over the weekend...except when Eleni accidentally pressed the "911" button instead of the nurse call button. Dean and Eleni both were very impressed at how quickly all the doctors and nurses burst into Theo's room. We were told first-time families often make that mistake. Oh, and there was the time when Theo and the girls wanted to go visit the playroom. When they tried taking the elevator to the first floor, it literally "shut down".  You see, Theo was equipped with a tracking device on his ankle, and no one told them to stop at the desk to let them know Theo was leaving the floor. When security rushed in and wanted a full report of the "incident", they realized that we had made mistake #2.  :)

NO HOSPITAL COULD KEEP HIS FRIENDS AWAY

It was an emotional five days, as everyone can imagine. But, every time a visitor came to our door, Theofanis was the happiest kid in the world!  Father Andrew was more than a familiar face when he arrived on Saturday morning with good wishes, a blessing, and a couple cups of Dunkin' Donuts coffee. Starting with his sisters and two grandmothers, a lot of love and friendship poured into our room and over the phone and email.  Here are just a few to name...Mr. George (our pastoral assistant);  Alexandra (our cousin and pediatrician);  Presbytera Dimitra and Joanne with Anastasia, Katerina, Giorgio and Stefanie (and Demetra & Sophia who had a sleep over with them); George and Angie; Theia Georgia; Theio Kosta, Becky and Elizabeth. Oh, and we got a special visit from our new friend, Yano, his mom and grandma. Yano is a Neuroblastoma super-star and winner!  He is turning 5 next week and is now cancer free!

Theofanis started his "Beads of Courage" strand. This is a fantastic program for childhood cancer patients to record their experiences and express their feelings along their journey. Each bead represents a different experience. There are different colored beads for a hospital night stay, for surgery, for a "poke", etc. There are "bumpy" beads for tough days, "courage" beads when they felt they overcame fear. This truly is a wonderful program! Theofanis LOVES this. You can see that he's already very proud of his beads of courage.  

On Tuesday (day 5 of chemo), Theofanis got super excited when the doctors told us they were moving up his chemo treatment so that we could go home early!  So, for all of you who lovingly called us asking to still visit, we'd love to have you come down next time.  We'll be back at Comers on June 8th.

THE SPOT

Theofanis' First Round of Treatment was:

·         Chemo Day 1 @ 5:00 pm: Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis did great.

·         Chemo Day 2 @ 5:00 pm:  Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis did great.

·         Chemo Day 3 @ 5:00 pm:  Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis was sick. He got scared. We all got scared.

·         Chemo Day 4 @ 1:00 pm:  Cytoxan and Topotecan. 1/2 hour infusion each.  Theofanis held the plastic basin under his chin during most of the hour. He said, "I'm just practicing." Later, he was sick. We explained to him that his body is "getting the yuckies out." (Renee, thanks for letting me plagiarize).

·         Chemo Day 5 @ 9:00 am:  Cytoxan and Topotecan.  1/2 hour infusion each. Theofanis did great.

He was given quite a bit of anti-nausea medicine throughout the five days. He was given Zofran and Benadryl.  It knocked him out here and there.  He's also sweating a lot and it's causing a rash under his dressing for his central line. We need to find a better, less irritating adhesive.

Eleni and Kosta observed a lot, asked questions a lot, asked the same questions over and over, and tried their hardest to retain as much information on each of the meds, how to clean and flush his central line, what sanitary procedures must be followed, and what to look for on his monitor.  They're documenting everything, too.

They all left happily on Tuesday, but with nervousness on what's ahead.  They left with a stack of prescriptions,  several cans of Pediasure (because Theofanis' appetite was disappearing), and the emergency number to call in case Theo develops a fever of over 100.4 degrees F.  The one assurance Eleni and Dean had was that a home care nurse was arriving the next morning to teach them everything they need to know about taking care of their son at home.

Theo is resting at home, and he's full of energy.  He has gotten nauseaous again, but he's happy to sleep in his own bed.  He's eating a bit more and he even did all his homework! Maybe he can go back to school for a day here and there? Only his blood work will tell if and when it's ok.  He's getting his first set of labs taken on Thursday. Monitoring those WBC, RBC and Platelet levels has begun.  Watching and preparing for the ups and downs that come between treatments is critical. Let's pray that he's able to fight off any potential infections.

WITH LOVE AND PRAYER HE WILL WIN!

Let's talk about the power of a hug.  One of the nurses grabbed Eleni and gave her a hug, late one evening in Theo's room. Even though she said, "it's going to be ok," her hug was more assuring than her spoken words.  It's hard to misinterpret a hug because a hug can mean so much.  When a stranger meets you for the first time with a hug, it's a statement beyond "hello" or "nice to meet you", but instead it's a hope that "we can be friends."  When a man extends a hug to another, it means, "I am here for you."  When a husband and wife hug, it says, "we're in it together."  When a parent hugs their child, it means, "I will protect you." 

So for those days when you think you're struggling to find just the right words to say,  consider extending a simple hug to someone.  Hugs can be given at any time, and for any reason. They can be sent from afar as well by simply saying, "I'm sending you a hug." Kosta and Eleni want to thank all of you for every single hug you've given us and our family!

One last note...we got another sliver of good news from some preliminary tests from the bone marrow biopsy.  At first glance, there are no visible neuroblastoma cells in the bone marrow!  Remember, though, the year-long treatment plan for Stage IV High Risk NB doesn't change.  And, we're still waiting for more test results.  But any little pieces of good news will hopefully help our medical team place Theofanis' Neuroblastoma on the better end of the spectrum.  Continue to pray loud and strong for our little boy, because God is hearing all our prayers!  Thank you, Lord, for listening to our prayers for Theofanis!

Gotta Love Popsicles!

OUR ROAD TO CURE BEGINS

Theofani, Eleni, and Kosta arrived at Comer Children's Hospital Friday morning. Theofanis had an 11:30am operation scheduled to have a bone marrow biopsy performed on both sides of his pelvis and have a central line installed close to his heart to receive his chemotherapy. He did very well throughout the morning and Dr. Liu spoke to us before and after the operation and reported that the installation went perfectly.

After the operation, Theofani was sent into the recovery room and we went to see him there. He was groggy but soon was back to himself and requested a Popsicle from the very nice nurse. It was a double Popsicle -- orange. The pineapple flavor that Theofani asked for was not available.  We were very honored to have Nouna Evy come by and visit. She made Theofani feel much better by her being there for him (and Mom and Dad, too). One more Popsicle was ordered and this time it was a cherry double Popsicle. The nurse marveled at how he could eat two whole Popsicles. "Four," Theofani responded, as he pointed out each had two. We then knew he was truly coming out of it.

THE SPOT

Soon enough we were transported to our room where we will be staying for the first cycle of chemotherapy. We are on the sixth floor at Comer's and our room has a lot of space, a pull out twin bed and big chair for Mom and Dad and a nice flat screen TV.

It was an uneasy and surreal feeling entering the room for the first time. A part of us understood this is what is necessary to get better and get cured and a part of us wanted to turn around and run out of here. Theo sensed the tension and with the post-operative pain from the chest he started to cry. Then we all cried and promised him he would get better. When he saw Kosta crying, Theo suddenly stopped. The nurse brought him some pain reliever and he felt a bit better. We then ordered him some lunch, albeit a little late, and he felt much better.

He began his chemotherapy treatments at 5pm. The chemotherapy nurse administered the two drugs, one after another, for thirty minutes each. The first drug was Cyclophosphamide (Cytoxan) and the second was Topotecan. Theofanis sat calmly in his bed and played with his iPad the entire time. No issues or allergic reaction at all today, which is good.

We all ate dinner afterward and watched over our son as did the nurses and doctors here at the hospital.

We are very blessed to have such a beautiful and intelligent and polite little boy. He cried once yesterday, but Eleni and Kosta can not count the number of times they cried yesterday and Kosta is still upset with himself for losing his composure and doing so in front of his son.

Theofani has all of his icons by his side.

WITH LOVE AND PRAYER HE WILL WIN

Saturday the Greek Orthodox Church commemorates Saints Constantine and Helen, many times referred to as equal to the Apostles for having the courage as Romans to search for the Holy Cross and build churches for the early Christians and legalize Christianity. Kosta and Eleni seek to achieve that same courage each and every day for not only Theofanis, but Demetra and Sophia and the rest of the extended family.

Father Andrew visited us Saturday morning to say a prayer for Theofani and brought some Holy Unction.  He also brought a couple of cups of coffee for Mom and Dad on their Names' Day. Hronia Polla to all Constantines, Constantinas, and Elenis!

Dr. Cohn later stopped by with her team and told Theo how great he looks. She seemed pleased.  Saturday afternoon Theo will have his second day of chemotherapy.

We are taking this all one day at a time. Thank you to you all for your continuing love and prayers. With all this, Theo will win!

Sister, Sister

Getting Ready

His sisters will miss him when he's in the hospital.  While we were at Rush, the nice folks in Child Life Services gave Theofanis a colorful pillowcase. They also gave him two extra pillowcases for each of his sisters.  We decided that Theofanis will use that pillowcase every night he'd have to stay in the hospital and that the girls would also use their pillowcases those nights as well. The pillowcases have been washed and ironed (yes, for those of you who know Eleni well, she insists on ironing sheets). All three pillows are ready for tomorrow.

As promised, we'd like to tell you about Theofanis' fabulous sisters.

Demetra is eight years old and is in second grade at Pythagoras Children's Academy.  She, like her brother, was born on a special day...the night of the Anastasi. She is smart, creative, kind, compassionate, funny and sweet. She has been dancing for five years and now is a member of Palatine Dance Company 1.  (It's recital week this week, by the way.) She takes piano lessons, too. She played soccer and has taken ice skating lessons, but of all sports, Deme loves to swim. She loves to read.  She's currently reading the fourth book of Harry Potter. And, she has a passion for writing. Demetra wants to be a rock star. We already think she is.  She loves her brother very, very much and Theofanis loves her.

Sophia turned four in February.  We were shooting for another holiday baby, but we missed Valentine's Day. She was born on the 18th, which our niece informed us was Chinese New Year!  Does that count? She is finishing her first year at Pythagoras and is looking forward to Pre-K this fall so that she can go to school everyday. Like her siblings, she has a great sense of humor, if a bit more mischievous. She also is finishing her first year of dance and her ballet recital is in two weeks. She's very excited about it, too! Sophia is very good at the app game Angry Birds...she's the high scorer in the family.  Her favorite color is pink. She is learning sight words, enjoys coloring, loves to dress up and pretend play, and likes to play indoor basketball with Theofanis. She loves her brother very, very much and Theofanis loves her.


The Yianas kids take care of each other.

The Spot

Theofanis' treatment begins tomorrow.  He packed his own suitcase for his stay in the hospital.  His surgery is scheduled for 11:30 am.  Dr. Liu will put in his central line and Dr. Ruth will perform the bone marrow biopsy. Then he will be admitted to the hospital and will start his chemotherapy.  During his first cycle, he will be given Cyclophosphamide and Topotecan. He will be given this medicine every day for five days. Then, we'll get to go home for about two weeks, after which another cycle will take place.  He will have six cycles in this initial phase of therapy.

With Love and Prayer He Will WIN!

Please continue to pray for Theofanis.  Your prayers are precious to us. We continue to be touched and humbled by the number of best wishes, positive energy, love and prayers sent our way.  We cannot thank you enough for your love and friendship!

Dr. Cohn feels that there is every reason in the world for Theofanis to win and so do we.

IT'S ABOUT FAMILY AND FRIENDS

It was an incredible action-packed weekend for the Yianas Family. We had a wonderful Paraklasis service on Friday. Family, friends, teachers, classmates and our community gathered at our church to pray. We're touched and grateful for everyone's prayers and support. The tears we shed on Friday were filled with sadness, disbelief and fear, but, they were also filled with appreciation that so many people came to show their love for our son.

Saturday was party day. Demetra had a girly birthday party with her friends. They sang and danced to Selena Gomez, and also recorded a music video. (I even think that Theo participated at some point as well. Remember, we've seen him dance before!) And then we spent the evening at the PCA Dinner Dance.  Theofanis also got to be in a magic act, where the magician made him "float." Way cool. Way fun.

We spent a lot of time with family and friends each and every day over the weekend. Theofanis played constantly. (Except on Sunday morning at church when he was in the altar.) We ate a lot of pizza, too. We ate pizza every day, now that I'm thinking about it. It's ok, though. Tonite we were able to get all the kids to eat some cauliflower. (It has cancer-fighting properties, so keep it stocked in your fridge!)

Also, Theo is extremely happy and excited that so many people are thinking about his upcoming hospital visits and that they've come up with great ideas on what he can do while he's there. The ideas also have come with very fantastic and very generous gifts. From books, photos, cards, games, pillows and pillow pets to 3D-DSI & games, baseball card collection, and an endless amount of candy and treats, we can't thank you enough for all these wonderful gifts that are sure to bring him some comfort as he's going through his treatment. 

Last weekend, we took a family portrait (see above). Our last family picture was taken a year ago. It was time for a new one.

In our next blog posting, I'd like to tell you a little bit about Theofanis' two sisters, Demetra and Sophia. They are the best sisters ever!!!!  They're on this journey with Theofanis, right there by his side.

THE SPOT

It's official. Dr. Susan Cohn from the University of Chicago is Theofanis' oncologist.  With her, we will fight to cure him.  With her, Theo will win!

After several very emotional days of coordinating the transfer of test reports and biopsy slides, we finally got all information on Theo's diagnosis to Dr. Cohn. She scheduled Theofanis' surgery  for the bone marrow biopsy and the central line (port where he'll be getting his chemo, etc.) for this coming Friday. He will then be admitted to the hospital and chemo will begin. Kosta and I are meeting with Dr. Cohn on Thursday to review the treatment plan in detail and discuss whether we should participate in a clinical trial. We have a lot of questions on benefits vs. risks. We have a lot of big decisions to make. The goal isn't just to get rid of every single neuroblastoma cell, but the goal is that it never comes back!

WITH LOVE AND PRAYER, HE WILL WIN

I'm not sure if everyone truly knows how grateful Kosta and I are for all your prayers to cure Theofanis. No words are adequate. No expressions can convey how we truly appreciate your pleas to God and Christ and Mary and all the Saints.  And, as we all pray for a miracle, we'd like to ask you to say thank you to God for us...for giving us a wonderful son and two wonderful daughters. Thank you, Lord, for blessing us with our family.  Oh, and a couple of prayers for the parents...please pray for us to make the right decisions for our son. Please pray for us to have strength to be able to keep it together.

"Silly" Theo

EVEN WITH RAIN, THERE'S SUNSHINE!

Theo's had a couple of "double thumbs up days" as our family has stopped to take a breath and prepare for Theofanis' tough battle ahead. He went back to school (with homework and all), back to piano lessons, and back to baseball. With the weather cooperating nicely, he spent a lot of time at the playground and a lot of time with his friends. A silly-string-filled afternoon at the park on Tuesday with his best friend Pantelis and his family caused Theofanis to giggle and laugh well into the evening. (The water balloons and driving a convertible helped, too.)  And today, he played baseball for the first time in weeks! The Angels were looking good during the first inning when all of a sudden, the drizzle turned into rain, and rain then turned into a downpour. But, even with a rain cancellation, Theofanis warmed up that pitching arm and had some fabulous left-handed catches. (He claims the Angels won the game because we had more outs. Who wants to argue that?)

THE SPOT

Stopping to take a breath didn't mean we stopped anything. We went to the University of Chicago for a "second opinion" with one of (if not the) top Neuroblastoma specialists in the country. We spent three hours in a consultation. We became more informed. We had more questions answered. We understand more. We have a better glimpse into the reality of the long and difficult treatment that awaits a Stage IV Neuroblastoma patient. We became more scared. Six rounds of chemotherapy, radiation and surgery, a stem cell transplant and 6 months of immunotherapy (antibody) treatment. That's what lies ahead. But, we feel we found the right hospital, the right doctor, and the best environment for our son to beat this cancer. With tears in our eyes, we turned to the doctor and asked, "Will you cure our son?"  With a nod, Dr. Cohn said yes, that's the plan. Then she asked us if we wanted a tour. Shepersonally gave Theofanis a tour of Comer Children's Hospital. He really liked the playroom. He felt comfortable there. He smiled there.

Stopping to take a breath didn't mean that Theofanis put the cancer out of his mind, either. He's starting to talk about it more. Yesterday, he told us his arm hurt and his legs hurt. He pointed to the inside of his left arm and the back of his legs. We told him his muscles probably were sore from running around and playing. He wasn't satisfied with that answer. And that's when it hit us. We told him that there aren't any bad cells in his legs or on the inside of his arm, but just on his elbow. He looked at us and said "how do you know?" We told him we knew because the bone scan showed no other tumors. Then he pointed to his belly and said, "what about here?" And we said, yes, it's there, but we're gonna get those bad cells out. And we remined him that he should not worry, but instead "give his worry to us" (a game that Kosta and I started with him where he holds one of our hands to transfer his worry out of him to us). We said, "Give your worry to us." And he reached out and took both our hands and said to us, "Why? Do you want to be scared?" Our little boy is the bravest boy in the world!

WITH LOVE AND PRAYER, HE WILL WIN

As we drove up to our house this evening after a busy day, we noticed a manicured lawn, colorful fresh flowers and plants that filled a dozen pots (that were empty when we left in the morning), and a love-filled message written in chalk on our driveway. Some very dear friends and their children sneeked in while we were away, got the lawnmower started, filled their hands with dirt, planted beautiful flowers, and brought LIFE to our home. To the Tunney and the Kics families, we can't thank you enough for everything you've done and do! We love you very much!

And to all of you who continue to shower us with your endless support, prayers, and encouragement, words can't adequately express how blessed we feel to have so much love surrounding us. I told a mom at school today that we feel overwhelmed with pure joy that so many people love our son so much.  And all of you are true testament to the fact that with God's grace and love, Theofanis will win. We all will win! (That's definitely worth more than two thumbs up!)

He's Dancing in the Hospital :)

Tuesday, May 10^th:

Yesterday, our whole family went to the hospital.  Theofanis introduced his sisters Demetra and Sophia to his medical team and showed them around the hospital.  His sisters were a great support as he completed his first round of scans.  They played Monopoly, watched a movie, and got a few goodies along the way. There was also a lot of laughter and chuckles throughout the day, especially when Theofanis did his crazy hospital gown dance while waiting for his EKG.

THE SPOT

We received confirmation that his cancer is stage IV.  We were told that he has a very "tricky" cancer. The CAT scan identified a golf ball size mass on his adrenal (where neuroblastoma typically resonates). We believe that his is the primary tumor. The CAT scan also told us that his organs look good.  The bone scan results came out great, too. No tumors were found besides the metastatic tumor by his elbow. The MIBG scan, which lights up any neuroblastoma tumors 1 cm in size and larger, identified only one area of neuroblastoma in his body…his elbow.  The tumor in his abdomen did NOT light up.  Our doctors believe that this tumor is dead or dying. Usually, when a neuroblastoma tumor dies, it’s because it’s growing so fast that it runs out of blood and can no longer sustain itself.  Theofanis’ tumor is small and we’re not sure why it died.  

Even though this all seems like decent news, we know the cancer has spread because we know it’s spread to the bone. Now we need to find where the neuroblastoma “sick” cells are in his body.  He still needs the bone and bone marrow biopsy to find this out.  This is done through surgery. And, his adrenal (dead tumor) needs to be removed. We decided to schedule his surgery next week and then begin his treatment to shrink his tumors and kill every single neuroblastoma cell in his body. It will take a year, but he will WIN!

So, Theofanis is going to have a normal week this week!  He went to school today, and his teacher Mrs. Patty sent us a note that read:

“He was soooo happy to be in school today. He loved all the work he did and commented that he had to finish all his work he missed yesterday! He was very at ease being here. He spoke about how this was his last week here to the class briefly and that he would miss next week because of his surgery. He told the children that he would contact them through skype..... I told him he can email us whenever he wants and feels up to it or even send us a letter, we will do the same. I let him share this information because I wanted him to share his feelings with us.”

And his parents, with the guidance of so many dear, dear friends, have started researching and seeking more information on neuroblastoma, specialists, and connecting us with families who have gone through battle with this disease. We are meeting with Dr. Susan Cohen, the top Neuroblastoma specialist in the country Thursday morning. Our current oncologist suggested we seek her opinion as well. It’s comforting to know that our children’s doctors collaborate with each other and work together to put our children’s health and future above all else.

WITH LOVE AND FAITH HE WILL WIN

Father Andrew has planned a Paraklisis Service for Theofanis this coming Friday at 2:00 pm in our main church of Saint Demetrios.Theofanis'  family, friends, schoolmates from kindergarten, first grade and second grade, along with his teachers and parents of Pythagoras Children's Academy and our community will attend the service. We would love it if you are able to join us in this special church service where we will all pray for our brave Theofanis together.

THEOFANAKI (our little Theofanis)

Theofanis (aka Theo) is six years old, loves to play and watch sports, takes piano lessons, loves swimming, and wants to grow up to be President of the United States. He lives in Palatine, IL with his mom, dad, sisters Demetra (8) and Sophia (4), and fish named Carmen. He’s in 1^st grade, but really should be in kindergarten. (He’s a smart kid). He attends Pythagoras Children’s Academy, the English-Greek parochial day school of Saint Demetrios Greek Orthodox Church in Elmhurst. He is very proud of his Greek heritage. Plus, he’s very proud of getting first place in the Science Fair this year (How thick are liquids?). He loves reading, especially about Presidents. He plays soccer and baseball. His dad coaches his Palatine P.D. baseball team, the Angels. Theofanis loves to win!  This is something we all need to remember.

Theofanis has a special birthday. He was born on Christmas Day. He came two weeks early to be the best Christmas gift ever!  Born on Christ’s birthday, he was named after the Epiphany (Christ’s Baptism). His name, Theofanis, means “the light/display of God.” He is an altar boy and he simply and purely loves the Church.

Theofanis has an infinite amount of love surrounding him.  From his mom, dad, sister Demetra and sister Sophia, his Giagia Sofia and Giagia Agni; from his Godparents, aunts, uncles, 5 first cousins and over 100 second cousins in both the US and Greece; to his classmates, schoolmates, and teammates; to his teachers, coaches and instructors; to his entire Church community; and to his dear family friends, Theofanis is loved. He is a sweet, compassionate, polite, respectful little boy, who is sometimes shy, but quickly opens his heart and his humor to those around him.

On Wednesday, May 4, 2011, we were told that he has a rare childhood cancer called Neuroblastoma. Approximately 250 – 300 children are diagnosed per year in the United States. His exact sub-type is Ganglionuroblastoma.

THE SPOT

Theofanis was in a cast for about 5 weeks, starting in late March, for an injury on his arm by his elbow. X-rays showed there was a spot where new bone was growing over something, like a fracture.  When the cast came off, our Orthopedic was uncomfortable at the rate of how the bone was healing.  We needed to rule out a bone infection, and that’s when the tests started.  An MRI identified an abnormality, so a bone biopsy was performed at Rush University Medical Center. We received the pathology report mid last week, and that's when we were given the devastating news that he has cancer. Our pediatric oncologist immediately started scans and extensive testing to locate the primary tumor and any additional secondary tumors. The CAT scan identified a mass about the size of a golf ball in his abdomen on his adrenal gland (where Neuroblastoma generally resonates) which is believed to be the primary tumor. There was some good news that came with the CAT scan as it showed that his major organs appear to be clear. Theo then underwent an MIBG, where radioactive iodine was injected into his body. This scan lights up areas where Neuroblastoma is present. He is having a bone scan tomorrow, and then in the afternoon, we’ll get the preliminary results of all these tests which will help determine what stage the cancer is in and what treatment will cure our little boy. Then on Tuesday, he will undergo surgery for another bone biopsy, a bone marrow biopsy, and prep for the radiation and chemotherapy he will be undergoing as part of his treatment. All of Theofanis’ test results will be sent to the National Institute of Health’s Children’s Oncology Group where his final treatment plan will be confirmed.

WITH LOVE AND FAITH HE WILL WIN

Over these past few days, we have seen Theofanis display an incredible amount of courage as we explained to him about the battle that lies ahead. We explained that that the body is made up of cells.  The doctors found sick / bad cells in his body and now we need to get them out and make the healthy cells in his body stronger. He will need very strong medicine and will need to have more surgery and be in the hospital.  We also have a sign for Theofanis to tell us how he is feeling. Thumbs up means great.  Thumbs sideways means ok.  Thumbs down means not so good.  Theofanis did great throughout the scans and various tests he’s taken!  He laid still when he needed to. He was patient with every test. He didn’t complain. He asked if he could see the final scans. He played Monopoly while he drank his “juice” for the CT scan. He won, by the way. That was a two thumbs up moment!

We are frightened out of our minds, but are taking it one day at a time. We’re praying for favorable test results right now, praying that Theo’s body will fight every “bad” cell that’s trying to overtake his healthy cells, and praying that we have the strength to be able to comfort and protect our little boy (and his two sisters).

We are thankfully and humbly overwhelmed by the outpouring of support from our family and friends. It means more to us than words can ever express.  All the phone calls, texts, visits, words of encouragement and most importantly, the prayers that have been extended to Theofanis and our family re-affirm how blessed we are to have such wonderful people in our lives.

Today, Metropolitan Iakovos of Chicago said a special prayer for Theofanis after church, on the day he served as altar boy. He’s been anointed with holy oil from Saint Nectarios in Aegina, he’s been given holy oil from Agion Oros, aigiasmo from Tinos, holy icons, a cross blessed by Archbishop Demetrios. These wonderful and precious gifts were given by people who have expressed infinite love for him, and who have joined us in endless prayer to ask God, the Saints, our Virgin Mary, to protect him, to comfort him, and to cure him.

Thank you, everyone. And please, please keep those prayers coming. Say them loud so they are heard and echo through heaven.

With all our love, Eleni and Kosta.