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.