CHEMO #5 IS OVER AND “YES, THEOFANIS, YOU’RE RIGHT. IT’S NOT FAIR.”

Theo knows the drill.  Check into the SPA. Get vitals and blood drawn. Get hydration started. Get escorted to the oncology wing of the 6^th floor of Comer Children’s Hospital. Unpack and set up the room. Ask for the travelling Wii system. Then wait for the Chemo bags to arrive. For as much as Kosta and Eleni try to distract him from thinking about it, he knows when chemo starts. His energy is zapped right out of him. It's not necessarily the chemo drugs, but it could be the Zofran, or the Ativan, or the Bendadryl, etc......... Yes, Theo knows the drill all too well.

And although the doctors and the nurses continue to tell him he’s doing great, and in spite of the constant reminders from mom and dad that they are proud of him, you can see how this cancer is trying to invade and crush his spirit. "Fight, sweetheart, fight!"

On day two of chemo, as Eleni, Demetra and Sophia were getting ready to leave the hospital to head home for the night, Theo sadly looked at them and said, "I don't want you to go." As Eleni hugged him tight and told him she'd be back in the morning, he cried and cried and cried. He hid under the covers when his nurse Courtenay came to check on him. His sisters cried, too. And then he said it. "It's not fair!" And all that Kosta and Eleni could do was cry with him and in their hearts agree with him. "I want to go home," he said. "We will all go home together soon," they reassured him.

Chemo #5 is done, and Theofanis knows there's one more round of chemotherapy left. But treatment needs to continue, and Eleni and Kosta have started to talk to Theo about what comes next. "You'll have surgery to take out the tumor in your belly. Then, after Chemo #6, you'll have scans to make sure that all the cancer cells are gone. Then, the doctors will focus on making your healthy cells healthier! They're going to put back your stem cells and make them into SUPER HEALTHY CELLS!" That's the plan, and Kostaki and Eleni are praying non-stop that it happens that way. And they are praying constantly that God grant them the strength to be able to reassure and comfort their son when he feels it's unfair.

THE SPOT

This 5^th round of chemo induction was identical as the third cycle. And, like the third, these drugs cause severe nausea. He was given the “three drug cocktail” of Zofran, Ativan and Benadryl to control “the yuckies.”

• Chemo Day 1 @ 6:00 pm: Etoposide & Cisplatin. 1 hour infusion each. 
• Chemo Day 2 @ 6:00 pm: Etoposide & Cisplatin. 1 hour infusion each.
• Chemo Day 3 @ 6:00 pm: Etoposide & Cisplatin. 1 hour infusion each. 
• Chemo Day 4 @ 7:00 pm: Cisplatin 1 hour infusion.

Theofanis' nausea was tolerable the first couple of days, but as more medicine entered body, the vomitting began and at various hours of the day and night. When Theo was discharged from the hospital on Monday morning, he left with bucket in hand, but with a huge smile on his face, too! Since then, Theofanis has been taking doses of the three drug cocktail at increments of every two hours, and thus, Kosta and Eleni have not slept for longer than two hours at a time. (That's why the blog hasn't been updated in awhile.) As of today, Theofanis has been vomit-free for 48 hours, and mom and dad have started to cut back on the anti-nausea meds. They are hoping to be completely off the medication by early next week. And so far, his blood counts are holding up. But, he's definitely tired. He's starting to eat more, little by little. And his temperature is holding steady, too. "Fight, sweetheart, fight!"

TIME TO DO WHAT ALL KIDS HAVE TO DO...GO TO SCHOOL!

On Monday, straight from the hospital, the Yianas family went to register for school. The first stop was at Pythagoras and the next stop was Marion Jordan. All the kids saw their teachers, saw their rooms, and definitely got excited about the upcoming school year. It's a bit difficult for Theofanis to accept the uncertainty of when he could go to school, how often he could go, and how he's going to stay connected while he's in the hospital and at home.  With the loving support from all his teachers, administrators, and fellow classmates, we know that Theo can do it!

WITH FAITH, LOVE AND PRAYER HE WILL WIN!

Theofanis' spirit is always buoyed by visitors during his hospital stays and this time it was no different.  Mrs. Patty, Mrs. Dina and Mrs. Georgia came to visit Theo armed with many gifts and games to help him pass the time.  Also, his Theia Maria came by with Theo's cousins, Peter and Emelia. Theo and Peter played Wii and worked on Theo's latest Lego set, Emelia played with her Theio Kosta and Maria visited with Eleni.  Also visiting were Nouna and Nouno with Costa and Dora.  They brought with them the holy unction and a beautiful icon from their trip to the Virgin Mary's Monastery in Tinos, Greece, as they promised they would.  The love and support and prayers are working and Theofanis benefits from knowing that so many love him so much. With all he has experienced and endured to this point, and the many days of therapy that remain ahead of him, this knowledge will sustain, uplift and bolster him through the coming months.

Exodus 14:13-14

Moses answered the people, "Do not be afraid. Stand firm and you will see the deliverance the LORD will bring today. The Egyptians you see today you will never see again. The LORD will fight for you; you need only to be still."

Theo, be still and faithful. Let the LORD heal you and fight for you.

A DOUBLE DELAY

After Theofanis' discharge from the hospital earlier this month, his body steadily recovered from the side effects he suffered from his last round of chemo. With every passing day, his pain subsided, his appetite grew, his energy increased, and he became stronger. He played more, laughed more, and was even caught doing his "silly" dance more than once. He hung out with friends, served in the altar twice, went to the movies and children's museum, and even practiced with his Inverness Soccer team. Theo was obviously recovering. But, on the inside, his blood counts weren't.  

Theo's treatment protocol is on a 21 day chemotherapy induction cycle.  That means that every 21 days from his first day of chemo, Theo is scheduled for his next round. For his first four cycles of chemo, Theo's body did a fantastic job of recovering. His WBC, his Platelets, his ANC were all where they needed to be, and by when.  But now, with 10 toxic doses of chemo drugs given during 17 days of induction therapy, the cumulative effects are causing delays. 

He was originally scheduled to begin cycle 5 of chemo on August 11th.  The call came in from the hospital that his Platelets were too low.  They needed to be over 75.   Chemo was postponed until the 15th.  Then, on the 15th, news came that his Platelets looked great, but his ANC (Absolute Neutrophil Count) was too low.  Chemo was postponed again. Theo's doctors assured Kosta and Eleni that it's not uncommon to have such delays. Being a week off from the protocol plan was not worrisome to the oncology team. But for Theo's parents, it was. So when the call came in that Theo's blood test showed he was strong enough for chemo, the family grabbed their bags (which had already been packed for a week) and headed down to Comer Children's Hospital where he finally began his 5th cycle.  

Lets pray that he is able to tolerate the severe nausea and other effects that come with this difficult round and that he leaves the hospital on Monday feeling well. 

CONGRATULATIONS AND THANK YOU, KIKI!!!

A heartfelt congratulations goes out to the Yianas' family friend, Kiki Vale, who completed the Chicago Rock and Roll Marathon on August 14th!

From Kiki's website the day before the marathon....

"I appreciate every single person who has inspired me and shown support through positivity and I am grateful to every person who sent emails to say "way to go," but mostly thank you to every single one of you who donated to Theo's Race To Cure!  Thank you for sharing your hard earned money with a person is going through intense and painful adversity -BUT THEO WILL WIN! Thank you Theofanis for being my guiding light tomorrow when I complete my first half marathon.  Theo- every step will be dedicated to your complete recovery and your return to an easy going childhood.  No child or person should have to face and endure what Theofains is experiencing with treatments.   My prayers and heart are with the Yianas family today, tomorrow and always.  Efxaristo Panayia yia teen ef-ke-ria na trexo yia ton Theo!"

Kiki completed her first ever long distance event in 2 hours and 45 minutes, and she even beat her best training time by 15 minutes! She kept a strong and steady pace, and she didn't stop or slow down to walk during the entire 13.1 miles! 

Congratulations Kiki, for obtaining your goal, never giving up, and being an inspiration to Theofanis, Eleni, Kosta, Demetra, Sophia and to us all!  Thank you for your constant support, encouragement and friendship! And, thank you to everyone who supported Kiki and donated to Theofanis' fight to win!

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.