HE'S A TRUE CHAMP!

It was a difficult week for Theofanis as he dealt with his most physically challenging chemo symptoms yet. As his counts started to creep downward last weekend, the side-effects caused by the chemo escalated...

The Yianas family attended the CNCF Neuroblastoma conference on Friday and Saturday. Theo and his sisters met other children and siblings that have been victimized by Neuroblastoma while his parents listened attentively to all the top experts from around the country who have dedicated their careers to finding a cure for this terrible disease.  Several leading figures, including Theo's Dr. Cohn, presented information and were there to share their knowledge with the parents who have endured the emotional strain and challenge of combating Neuroblastoma, many through episodes of relapse.  It was enlightening because Kosta and Eleni learned about all the research and clinical trials being conducted throughout the US. It was disheartening because they also learned that there is a lack of funding for this desperately needed research. And because Stage IV cure rates are nowhere near where they need to be more effective and less toxic drugs are desperately needed. Eleni and Kosta left the conference more informed, but also emotionally exhausted. They both agreed, though, that the best part of the conference was seeing the kids...the Cancer survivors, like Paige and Abigail...the teenagers who are now volunteers...the siblings who fight alongside their brothers and sisters...the kids in treatment, like Theo, who were playing, doing crafts and just having fun.

THE SPOT

On Saturday morning, Theo started to feel warm and his temperature hovered at 99 degrees.  Eleni and Kosta became afraid of what was to come if his temperature were to go higher. They debated about not going to the meeting for a second day, but Theofanis really, really wanted to go. His parents did not have the heart to deny his need to be around other kids who understand exactly what he is going through.  Their son knows the importance of wearing a mask and has learned to be careful about contact with others, so with a close eye on him, they attended the conference. By late morning, his temperature reached 100.3 and his stomach and legs began to hurt him.  The Yianas' left the conference at noon, went home, and started to prepare for a likely trip to the ER.  By 4 pm, Theo's temperature spiked to 101.6 and a call to the doctor was necessary. By the time they reached Comer Children's Hospital, his temperature reached 102.7.  Antibiotics were immediately started and a bacteria culture was taken, as is standard procedure.  His blood test confirmed that he was neutropenic with a white blood cell count of less than 0.1, or basically zero. 

Kosta and Eleni questioned whether their decision to go to the conference contributed to Theo's hospitalization. But, the doctors reassured them that the symptoms he had were effects caused by the chemo from cycle 4. Negative bacteria cultures also confirmed he didn't "catch" anything.  Instead, his physical ailments were caused by the drugs Vincristine and Doxorubin.  For the first time, Theo suffered from severe pain.  His thighs hurt when he walked, and his throat hurt when he swallowed.  In addition, jaw pain made it difficult for him to open his mouth and eat. He also developed mucositis, which are mouth sores that can occur along the entire digestive track.  He had a big black painful spot on the side of his tongue. His stomach hurt as well, so for all these reasons, he could not eat. (He struggled to even take a bite of the baked bread that Theia Galinda dropped off for him.)Theofanis was miserable and very upset. He was given morphine for the pain.  His doctors assured them that the pain would start to subside when his counts would begin to go up. So, Theo and his parents waited each day for signs of improvement. With daily morphine injections, antibiotics, magic mouthwash, two 24-hour IV nutrition bags and three blood transfusions, Theofanis was starting to feel better with each passing day.

So, while at Comer in room 614 (which by the way, is called the "suite" because it's larger and "fancier" than the other rooms), the Child Life Specialists tried to make Theo's stay be as good as it can be. He got the portable Wii system, some board games and other activities sent to his room.  He updated his Courage Beads, too.  Although he was in semi-protective isolation, as the days went by and the doctors saw no signs of infection, they allowed a few visitors, like his sisters.  And, on Tuesday, a group of Major League Baseball Umpires stopped by the hospital. The four umpires were working the White Sox-New York Yankees series at U.S. Cellular Field, and, in cooperation with Build-A-Bear, were bringing bears to all the children at Comer. Southpaw, the White Sox mascot, accompanied them.  Kosta was as excited to meet them as was Theo (probably more).  A big thanks to Tim McClelland (crew chief), Ted Barrett, Brian Runge, and Marvin Hudson for stopping by and visiting with Theo and Kosta for awhile. Theofanis asked questions such as:  "Do you have to go to school to be an umpire (Yes)", and "What do players and managers say when they argue (Nothing we can repeat here)."  Theofanis did decline the offer to be on WGN-TV as a camera crew was with the umpires. They brought a Build-A-Bear with both Cubs and White Sox uniforms because Theo said he liked both teams, which made the umpires laugh. They also gave Theo two girl bears for Deme and Sophia.

Then, news came on Thursday that he could go home! On August 4th, three months to the day that he was diagnosed with Neuroblastoma, and as the Yianas' were waiting to be discharged from the hospital, a call came in from Bear Necessities, the organization dedicated to helping kids who are fighting childhood cancer. A package would be arriving the next day for Theo.  This welcome home gift was extra special because it contained a very special football signed by a very special Chicago Bears player. So on Friday, when Theo opened his delivery and saw a real NFL football signed by quarterback Jay Cutler, he grinned from ear to ear and was thrilled beyond words! It was very cool!!!!!

WITH FAITH, LOVE AND PRAYER, HE WILL WIN!

Each time Theo visits the hospital, the Yianas' pack a satchel with crosses, icons, oil, and books of prayers that have been given to him by those who love him and are praying for his recovery.  When they arrive, one of their first priorities is to set up his iconostasion in his room. Each holy item is carefully placed on the desk across from his bed. He and Mommy and Daddy say a prayer every day and night in front of the iconostasion and ask for Jesus and our Theotokos to intercede and restore his full health.  Especially now, during the Lenten Period before the Assumption of the Virgin Mary, we pray for Her to protect and safeguard Theofanis and all of us.

On Saturday, Theofanis received a package from two of Eleni's close cousins from Greece, Bill Karanasios and his wife Evgenia.  Evgenia recently visited the island of Calymnos and made a pilgrimmage to the Monastery of St. Savvas, where she prayed for Theofanis.  She received Holy Unction and acquired a blessed ribbon which is bestowed on those who are in ill health.  As Theofanis wore the ribbon around his wrist this week, Eleni and Kosta were truly grateful for their cousins' prayers, thankful for the symbol's of God's strength and protection, and continue to be humbled by the love pouring in from all over the world.

This week, our symbethero Foti Mourousias fell asleep in the Lord.  He was a wonderful man and father-in-law to Eleni's brother, Dino.  The Yianas family will remember him always as a gregarious and outgoing person, who loved to see the children at the many family dinners they had together. He always had a smile on his face, and his kind and gentle manner made everyone feel welcome in his company. Kosta will particularly miss the conversations he had with him about Greece and the old days.  Foti loved his grandchildren immensely and extended that love to Demetra, Theofanis and Sophia as well. Foti shared the same Name's Day as Theofanis and would once in awhile and on purpose, call Theo by his name, "Foti." Theofanis would always laugh when he did that. Theofanis recalled that when his parents told him that Papou Foti will be watching over him, just like his grandfathers Papou Theofanis and Papou Jimmy, who are already in heaven. The Yianas' hearts and prayers go out to symbethera Reveka, Maria, Dino, Bill, Zehenia, Becky, Elizabeth and Demetri.