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.

Chemo Cycle #4 is No More!

Theofanis has done a pretty good job staying on schedule with his Chemo treatments. Despite the two bouts of neutropenia and several blood transfusions, his young body has been fighting hard to quickly recover after every chemo induction. So promptly, 21 days after the start of his last chemo session, he was scheduled to be admitted for Chemo Cycle Four.  Last week, accompanied by his parents and sisters, he went to the SPA (Special Procedures Area) for his pre-chemo physical and blood tests. His nurses were concerned that his platelet counts would not be high enough to start chemo, especially since he had low counts that attributed to his nose bleed the previous week.  But, he checked out ok, so he was checked in to Comer.  His fluids were started, he was transferred to his room, but chemo didn't start until hours later...he was dehydrated so they added a bolus to get his blood to the appropriate level for the chemo.

While the Yianas' waited, they spent some time in the playroom, unpacked for their stay, and they even decorated the window in Theo's room to reflect a "Sizzling Summer" scene. It was, by the way 100 degrees F outside and the heat index was a blistering 110 degrees F. By the way, Theo promptly contacted Child Life Services to ask to borrow the remote Wii system, which he now hopes to claim ownership of at every visit.

There was a heartbreaking event at the hospital that contributed to the minor delays of the day. The doctors, nurses, staff and patients of Comer Children's Hospital were mourning the loss of Dr. James Nachman, professor of oncology and world-reknowned expert in pediatric leukemia. A memorial service was being held that day for the Comer Medical family to honor their colleague who unexpectedly passed away. Dr. Nachman was one of Theofanis' oncologists who was by far, one of the sweetest, kindest, nicest people anyone can ever meet. Theofanis said Dr. Nachman was one of his favorites! He was a baseball fan, so when Theofanis was organizing his baseball cards, Dr. Nachman would spend time with Theo going through his collection. He told us stories of when he met Pope John Paul II (Dr. Nachman was Jewish, so the story was pretty funny!) He even picked up Theo in his arms, giving him a big hug to make him smile. Dr. Nachman was brilliant, made great strides in leukemia research, and helped many, many children battle and win their fight against cancer.  For days, Eleni and Kosta struggled with how to tell Theo that Dr. Nachman had died. Death is a topic that the Yianas' don't want to talk about or think about. They stressed over when and how to tell him. They sought advice from friends and doctors. But, the right time came unexpectedly as they were walking through the halls of the hospital and Theo saw a poster of Dr. Nachman, paying tribute to him.  Deme immediately read the poster.  Theo looked at his parents for an explanation.  Eleni and Dean knelt down and explained that Dr. Nachman now has a special place in heaven. God is taking good care of Dr. Nachman since he took such good care of so many children with cancer.  Deme then asked if Dr. Nachman believed in God. When they heard "yes," all three kids immediately felt better.

THE SPOT

The chemotherapy regimen this time was dissimilar to his previous cycles.  Theo was given three different types of chemo drugs, and all were given in various lengths of time. As always, these medicines are administered intravenously  through his central line. Vincristine was a quick injection.  He was also given Cytoxan again, however, this time he was given a stronger dose which had to be administered over six hours.  His third drug, Doxorubicin, was administered over a 24-hour period.  Once the first bag was complete, his second bag was hung, and so on. 

His chemotherapy schedule for Cycle Four was as follows:

• Chemo Day 1 @ 9:00 pm:  Vincristine (quick injection), Cytoxan (6 hour infusion),  Doxorubicin (24 hour infusion)
• Chemo Day 2 @ 9:00 pm:  Vincristine (quick injection), Cytoxan (6 hour infusion),  Doxorubicin (24 hour infusion)
• Chemo Day 3 @ 9:00 pm: Vincristine (quick injection), Doxorubicin (24 hour infusion)

These three medicines and the constant flow of the chemo through his veins zapped a lot of Theofanis' energy.  He was tired and weaker than during previous rounds. The medications' immediate side effects included nausea, which caused Theo to lose his appetite.  His sense of smell and taste has changed, also.  And if you all recall, Theo has an extreme dislike of hospital food. So when Eleni and Kosta put food (brought from home) on his plate (brought from home), his tummy started rumbling and he immediately did not feel well.  He was a trooper, though, and really did try his best to eat.  He would have a bite here and there and he would try the protein shakes, grimmacing after every sip.

What made him happy and perk up though, despite the lethargy,  were the visits by those who love him...in person and via FaceTime. Theofanis received a FaceTime phone call on Friday from Theio George and Theia Angie (Sophia's Godparents) who, along with their children Filia and Anthony, were entertaining Demetra and Sophia for the day.  On Saturday, he had some extra special visitors from his beloved school, Pythagoras. He had a lot of fun visiting with Miss Jenny, his Greek dance teacher who walked in with gifts and cupcakes for all. And, Miss Evelyn (Sophia's preschool teacher) came by to play several rounds of UNO and make Theo and his sisters laugh.  On Sunday, Theia Tess came by to say hello in the afternoon with a Hexbug toy that Theo had hoped to scare the nurses with.  (It didnt' work, because Marlito wasn't the kind of nurse who gets easily scared.) And an improptu visit from his best buddy Pantelis and his mom Kimberly reenergized Theofanis so much that he ate his entire dinner!  Theo brightens up every time Pantelis walks into that hospital room.  It's precious to see the purity in their friendship!  And, visitors continued to come as Theia Maria and Theio Greg (Demetra's Godparents) came in and stayed until Theo was done with his chemo at 9:30 pm.  They brought with them a very cool Legos set, which would keep Theo busy for several hours.  But, there was no time to even open the box because the doctors said it was ok to go home as soon as he was disconnected from the IV and monitor. So, at around 10 pm, the discharge papers arrived, and the entire Yianas family quickly packed up and went home together!  The 72 hours of continuous chemo was over.

WITH LOVE FAITH AND PRAYER, HE WILL WIN

New battles are created each day. Whether it's getting through the day without nausea, eating a little more than the previous day, fighting off a fever or infection, or holding back the tears that flow at a second's notice, Theofanis has become a warrior.  He is a warrior without anger. He is a warrior who knows what must be done to win. He is a warrior with God on his side. Every day Eleni and Kosta are comforted by knowing that God is on his side. Just like when the kids were comforted by the fact that Dr. Nachman believed in God, the Yianas' trust in God brings them continued strength with each passing day. It is one day at at time, one prayer at at a time, but the power of prayer is immense and will loom large over their continued fight against this cancer.

This weekend, the Yianas family will be attending the Children's Neuroblastoma Cancer Foundation's Annual Parent and Medical Education Conference in Schaumburg, IL. CNCF is a national organization that is the premier source for neuroblastoma information and resources. Comprised of families affected by Neuroblastoma, they are committed to finding a cure for neuroblastoma through research, education, awareness and advocacy. ( http://www.cncfhope.org/ ) At this conference, parents are introduced to researchers who are developing new treatments and therapies to improve survival rates and reduce the long-term effects of treatment. Theofanis' oncologist, Dr. Susan Cohn, will be speaking at this event along with many of her reknowned colleagues from around the country. The Yianas' will meet other families who are fighting the same fight, hold the same fears, and seek the same cure. This conference is also focused on the children...those fighting for their lives, those who are cancer survivors, the siblings, and those children who are now angels. The conference has events planned for the kids. And when we asked Dr. Cohn if she thought that Theofanis would be ok to attend the conference, she said that as long as his counts are ok, its great for kids with neuroblastoma to meet and play together. Eleni and Kosta agree that it's time for Theofanis to meet other kids who understand what he's going through because they are living it, also. (Demetra and Sophia, too, of course.) And with this year's conference being held a mere 10 minutes from home, the Yianas' feel that their attendance is meant to be.

Theofanis' blood test today came back looking ok. Just ok. So, please pray that he is able to go to the CNCF conference and that his body is able to ward off any bugs that may threaten him.  And, please say a prayer for all the brave warriors and their families who are fighting Neuroblastoma and other childhood cancers.

Our continuing thanks and heartfelt regards go out to all of you who have bestowed on us your love, encouragement, hopes and prayers for the health and cure of our Theofanis. - Eleni and Kosta

THE POWER OF FRIENDSHIP

Love and friendship is universal, transcending distance, background, and ethnicity.  The Yianas family is reminded of this daily as the prayers, good wishes, and kind gestures continue to be received and appreciated from all over the world for Theofanis' fight against neuroblastoma. It's truly evident at Eleni's corporate Pentair family, where compassion for Theo has poured in with several amazing expressions of support through individual endeavors by colleagues and their families, both domestically and internationally.

Eleni has worked at Pentair/Everpure for thirteen years. Many of her co-workers have witnessed and shared her most important milestones in her life. They knew her when she was single. They saw her marry Kosta. They threw her a baby shower during her first pregnancy. They held Deme, Theo and Sophia when they were babies. They have watched her and Dean raise their children. And, they cried with her while they tried to comfort her moments after she received that dreadful call from the doctor on May 4th. 

Eleni's home office colleagues in Hanover Park, once Theo was diagnosed, immediately wanted to somehow make life a little easier for Theofanis and the Yianas'. Led by Mike Madsen (Eleni's boss and Dean's fellow political guru), colleagues and friends wanted to pitch in to get Theo an iPad 2. So, with that goal in mind, their creativity led them to design and order  "Support Theo Wristbands." These bright orange (Theo's favorite color) wristbands were offered in exchange for a $5.00 contribution. Through everyone's kindness and generosity, they raised enough money to purchase Theofanis his very own fully-loaded iPad2 with 3G service... and then some. While Theo is in the hospital, he uses "FaceTime," that allows him to speak with and see a live video of his sisters at home. They talk, make faces, act goofy, and share stories of their days. Also, the iPad has plenty of apps and games to keep Theo occupied and engaged throughout his many hours of treatment. The iPad has genuinely provided Theo with a great deal of comfort and happiness throughout his stays at the hospital and has kept his mind and hand-eye coordination very sharp throughout this ordeal. 

Frederick Chang and family have been extremely loving and supportive throughout Theo's journey to victory. Frederick is Eleni's friend and co-worker based out of California. Knowing that Theo is a Presidential buff and has ambitions of someday occupying the White House, Frederick contacted all the living former Presidents and President Obama, informing them of Theo's medical situation and desire to join their rank. Frederick's persistence netted responses from all but President Obama to date.  Presidents Carter and Clinton wrote personally to Theo, with President Carter writing a full letter to him. Frederick presented the responses from the Presidents to Theo in a wonderful binder and the gesture and the kind words are inspirational to him. Theo even displayed the binder in his hospital window during his last chemo cycle over the 4th of July, and he received quite a few "WOWs" from some very impressed doctors and nurses!  

In addition to all the support coming directly from colleagues, it's heartwarming for the Yianas' when expressions of encouragement pour in from co-workers' families.  Spouses, children, and parents of colleagues are praying for Theo. Children who have never met Theo, but have learned about him through their mom or dad and have read about him on this blog, are calling him a friend. When Dave Walczyk, a supervisor at the Hanover Park facility, brought home a flyer about Theo, his eight year old son named Zach decided to raise money for him. A determined young boy, he found three large glass jugs, made his father cut a slit through the cap, and began filling the jar with coins from his home. He took his cause to neighbors, explaining that he was raising money for Theo. When Theo saw the first jar that Eleni brought home with a note from Zach, he thought it was pretty cool! Frederick Chang's son, Travis also rallied his fellow Key Club members in California, where they raised money to send Theo an iPod with Greek children's music.   

Best wishes and prayers are also being sent from international colleagues. In Japan, Everpure employees there began working on hand-folding 1,000 origami paper cranes for Theofanis once they heard the news. They did this with the help of family members in their spare time. According to an ancient Japanese tradition, the folding of the paper cranes will grant a wish by a crane, such as long life or recovery from illness or injury. Along with a Japanese toy, the 1,000 prayers were shipped to Theo while he was in the hospital, and it brought color and life to his room and to the Yianas' hearts. 

Theofanis has received emails, cards, gifts, prayers and best wishes from friends throughout the US....from Minneapolis to Milwaukee, California to New York, and Florida to Seattle. Gifts and prayers have come in from each end of the globe, from Europe to Shanghai, China. Even colleagues from CPT, a newly acquired company in the Netherlands, sent a little something  to help keep Theo safe and healthy while he's immuno-compromised. With prayers coming in from all over the world, it demonstrates that the power of love and faith is strong everywhere!  

More and more bands continue to appear on the wrists of colleagues each day.  And as these friends express that they will wear them until Theo is cured from his cancer, Eleni and Dean feel extremely lucky and blessed to have their Pentair Family walking along side them during this journey. Thank you to all these wonderful people... colleagues, bosses, distributors, suppliers, and their families... for your personal generosity, support, encouragement, and prayers. 

THE SPOT

After Theofanis came home from the hospital on July 5, Eleni and Kosta tried very hard to keep Theo from getting another fever as he did after the first two cycles of chemotherapy. They did not want to go back to the hospital before it was necessary and Theo would be very upset to have another stay in between cycles. However, since the medicine was different for cycle three, they did not really know what to expect.  The doctors indicated that after the administration of the Cisplatin and Etoposide drugs, there would be much more nausea. To curb this, Theo was given round the clock doses of Zofran, Benadryl, and Ativan -- anti-nausea medications-- at various intervals. In addition, another side effect from the chemotherapy medication is lack of appetite. Kosta and Eleni had to ensure not only that Theo eat but that he stayed hydrated as he would need to get IV nutrition if he did not. Thankfully, Theo ate and drank enough to avoid the IV nutrition through much persuasion and explanation, and a touch of coercion. The nausea lingered, however. As Mom and Dad tried to drop one of the anti-nausea medications,  Theo would get sick again.  After about fourteen days, Theo finally was off all of the medications.

Kosta and Eleni were overly cautious during this round of recovery from chemo to protect him against exposure to any viruses or bacteria.  With the exception of a 30 minute outing to accept his baseball trophy, Theo stayed home and did not have visitors. Typically, after the first week to ten days back home after chemotherapy, the white blood cells dip very low and can cause a patient to become neutropenic, as had happened after the first two cycles. Eleni and Kosta awaited the first blood results with anticipation and were shocked to find that Theofanis' White Blood Cell Count and Absolute Neutrophil Count (ANC) were very high when they expected them to be very low. The doctors really had no explanation for this. As the days went by, the counts dropped and were more in line with the other cycles. After fourteen days Theo's WBC count was zero.  

As Mom and Dad were at work last Thursday, Theo's nose started to bleed. Both grandmothers were at home with him, Demetra and Sophia. Although, it was not bleeding profusely, the flow would not stop. After many feverish phone calls back and forth between Eleni, Kosta, home, and the hospital about what to do and where to go, Eleni raced home to take him to the local ER. But thankfully, the bleeding stopped. It was determined that Theo needed a blood transfusion. Kosta took Theofanis to Comer Children's Hospital on Friday for a blood transfusion and a platelet transfusion.  Although, Kosta and Theo spent virtually all day at the hospital, Theofanis felt a whole lot better afterward. Even better, he had no fever, so they were given the thumbs up to leave. So in return, Theo gave them a thumbs up as he left, happy that it was an outpatient day. 

Eleni and Kosta pray and give thanks to God that Theofanis  has been fever-free during this recovery period from Chemo #3. Theofanis' blood counts are being monitored closely. If they continue to increase at good levels, Theo will return to Comer Children's Hospital on Thursday, July 21st for the fourth cycle of chemotherapy. He will be admitted to the hospital for four days of chemo.  

WITH LOVE, FAITH AND PRAYER HE WILL WIN!

Saturday and Sunday were quiet, fun, and almost "normal" days for the Yianas family.  Theofanis was able to attend church and serve in the altar, too. Although still cautious about infection, Theofanis did receive some special visitors on Saturday. Nouna Evy and Nouno George came by the house before their upcoming trip to Greece. Theo was ecstatic to see his Godparents and so were Demetra and Sophia. Arms filled with presents and sweets for all the kids, they spent several hours with Theofanis, helping him complete his new Legos set. But their most precious gift was their news that Nouna will make a special pilgrimage to the island of Tinos. The Greek Isle of Tinos is where the holy place of Panagia's church of the Megalochari is located, as is the Monastery of Agia Pelagia. Tinos is a place of miracles. There, she will pray for her precious Godson. And from there, Nouna will bring back Holy Unction (Efchalio) and Holy Water for Theofanis.  "Kalo Taxidi" Nouna and Nouno, and may the lambada you light in Tinos burn brightly for our Theofanaki.  

When Theofanis is cured and has triumphed over this cancer, Eleni, Kosta, Demetra, Sophia and Theofanis will go to Tinos to echo their personal prayers of thanksgiving.


1 John 4:7, 11-12
Dear friends, let us love one another, for love comes from God... since God so loved us, we also ought to love one another, God lives in us and his love is made complete in us. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.


Thanks to all that have shared God's love with Theo!

HOME FREE FROM CHEMO #3

 

It's been a couple of "roller-coaster" weeks for Theofanis and his family with ups & downs, happiness & disappointment, and acceptance that the word "stable" is not entirely bad. 

Following a successful shave-off and lemonade stand party, the Yianas kids spent their week at Vacation Church School. On their first day of VCS, they learned that "Nothing is Impossible with God." They not only sang it throughout the week, but Theofanis kept those words close to his heart during his hospital stay and chemo cycle.  The teachers and students at VCS were nothing short of wonderful. As he headed to the hospital on Friday, they bade him farewell with stacks of cards handmade by each student, and a scrapbook filled with memories of the week.

While his days prior to chemo were filled with stories and learnings about Jesus as a child in Nazareth, his evenings brought him some new experiences as well. He and his family went to their first baseball game together at Wrigley Field. The kind folks at Bear Necessities (organization that supports childhood cancer patients) arranged for Theo to see the Cubs play the Giants (or, rather see the world-champion Giants beat the Cubs). Nonetheless, the Yianas family got to go onto the field before the game, got an autographed ball, saw Theo's name on the scoreboard in the middle of the 5th inning, and even experienced the "bleachers." Theo was a bit overwhelmed at first, but gradually took in all the action around him. Life-long Cubbie fan, Dad loved every minute of sharing his passion for baseball with his son. No worries, the ladies in the Yianas family enjoyed the evening, too.

Theofanis had his first sleep-over with his best friend, Pantelis. They laughed, hung out together and played Wii.Theo was also thrilled that Pantelis cheered on his best buddy during The Angels' last baseball game of the season!  It was heartwarming to watch these two boys--friends since preschool--tell each other that they were having the "best day ever!"  Head to head, they each cuddled in their sleeping bags on the floor, too excited to fall asleep and so excited that they were up the next morning at 6 am!

Theofanis was having "two thumbs up" days...every day! Even though he had to miss VCS on Thursday for his first MIBG scan, he didn't let his disappointment overshadow all the wonderful events of the week. He went into Chemo Round #3 feeling good, feeling happy, and feeling loved!

THE SPOT

Theofanis had his MIBG scans and a CT scan prior to being admitted at Comer Children's Hospital for his third (and most difficult) round of chemo. Eleni and Kosta were anxiously awaiting the results of his tests. On Thursday, they received good news that the bone marrow biopsy showed no signs of neuroblastoma cells. His bone marrow is clear! As their son so bravely sat motionless for a cumulative 3+ hours for the scans, they prayed that they would see a smaller tumor on his adrenal and signs of tumor regression in his arm. When the doctors approached them with the results that the size of the tumor on the adrenal did not change and that the cancer in his ulna was still active, Eleni and Kosta's hearts sank. They so desperately were seeking signs that the tumors were shrinking. There was good news, though, that the doctors delivered and insisted they focus on...the cancer did not spread. It has not progressed. It is stable.  All the doctors told them that because Theofanis' has a relatively low level of disease (relative to those children whose organs and bone marrow have been completely overtaken by cancer) that it is not uncommon that the first two rounds of chemo don't show significant shrinkage. As Dr. Cohn said, Neuroblastoma cells are difficult to kill and that's why the treatment plan is long and aggressive. Every doctor saw the fear in Kosta and Eleni's eyes and all tried to reassure them that they feel good about how Theofanis is responding to treatment. They also wanted them to focus on the clinical signs of improvement, particularly on the fact that Theofanis no longer has pain in his arm.  But, in desperate need of some visual proof that the cancer is going away, Eleni and Kosta asked for another x-ray of his arm. Although an x-ray doesn't show any image of the tumor, they wanted to compare any changes in calcification in the area where the cancer cells are buried. The doctors agreed to their request, and the x-ray did confirm that the bone is showing signs of healing.

They prepared for Chemo #3 with mixed emotions: Relief that the cancer has not spread. Sadness that it's still in their son's body.

• Chemo Day 1 @ 11:00 pm: Etoposide & Cisplatin. 1 hour infusion each. 
• Chemo Day 2 @ 11:00 pm: Etoposide & Cisplatin. 1 hour infusion each.
• Chemo Day 3 @ 11:00 pm: Etoposide & Cisplatin. 1 hour infusion each. 
• Chemo Day 4 @ 8:00 pm:  Cisplatin 1 hour infusion.

Prior to starting chemo, the U of C Hospitals pharmacist met with us to explain the harsh nature of these drugs, particularly Cisplatin, which causes severe nausea and delayed nausea. He suggested to begin controlling vomitting by starting a "three drug cocktail" around the clock:  Zofran, Benadryl and Ativan. The drugs were able to suppress any violent nausea, but he did often need to "get the yuckies out." The Benadryl and the Ativan made Theofanis very drowsy. We could tell he was unstable on his feet when we would go to the playroom for a change of scenery. Because the chemo was administered in the middle of the night, he was able to visit the playroom a couple of times where he played basketball and football on the XBOX system.

Theofanis required extra hydration during this round of chemotherapy. Upon discharge, Eleni and Kosta were told to pay special attention to his fluid intake and nutrition. And, because Cisplatin has the tendancy for intense delayed nausea, the Yianas family left for home on Tuesday with concerns and worry of not only Theofanis getting a nutropenic fever, but also worry that he will not be able to keep down any food or fluids. So, they left with prescriptions that made up the "three drug cocktail."  Not knowing what kind of delayed nausea Theofanis might have, they started out giving him two anti-nausea meds around the clock. When on Wednesday, Theofanis could keep no food or water down, Eleni and Kosta added the third anti-nausea med. Today, Theofanis threw up only once and was able to drink a good amount of Gatorade throughout the day. But, the side-effects and drowsiness concern his parents who are hoping to wean him off the drugs as soon as possible. A slight scare in the shower when Theofanis became dizzy and unstable, raised panic that all these drugs cannot be good for him. Eleni and Kosta's prayers strengthened for Theofanis' treatment and cure quickly follow each other. 

WITH LOVE, FAITH AND PRAYER HE WILL WIN!

Theofanis spent the 4th of July holiday weekend in the hospital. To spruce up his view, he drew pictures of the United States, our flag and fireworks with window markers. His doctors and nurses commented on his window art, and they also mentioned that they read about him in the paper! Demetra and Sophia visited on the 4th of July, and the whole family spent the day together hanging out in his "red, white and blue" patriotically decorated room (thanks to the Guth Family for sending a very special Independence Day care package), doing activities in the playroom, and sharing three simple, but special meals together. Fireworks could be heard outside. But, the celebration was inside because the Yianas family was together.  

Everyone's outpouring support of love and compassion continues to humble the Yianas family. Eleni and Kosta feel deep gratitude to everyone each time they put a smile on their son's and daughters' faces. Every little thing that people do to help lift their spirits is cherished. And every time they are told they are being prayed for they feel comforted. 

So, here are some extra special things some extra special people did for the Yianas family. Each one deserves an extra special thanks, too!

• All the fantastic teachers at St. Demetrios, lead by Presbytera Dimitra, organized and put together a wonderful, memorable and inspiring week of Vacation Church School. Thank you for all your work, dedication, and committment to all the children of our community. Thanks for taking extra special care in protecting Theofanis from germs. (You all did great because his wbc's were at a low 2.2 when he was admitted, but he was able to stay strong throughout his chemo infusions.) Thank you for letting Kosta and Eleni help out in the classroom whenever we could. (Sign us up for full time next year!) Thank you for promoting the Support Theofanis bracelets. Thank you for making Theofanis, Demetra and Sophia feel loved!
• Wishes and prayers from all of Eleni's wonderful friends and co-workers from Pentair has continued to poured in.  From "Theo" bracelets, to an ipad, to 1,000 origami prayers and letters from 4 living U.S. Presidents (1 still pending), the Yianas family's "Pentair Family" throughout the globe has extended an incredible amount of support to Theo. The next blog posting will feature some of the wonderful expressions of compassion and support that have come from co-workers and family members. (There are way too many to write about today, in this already long blog posting)!

• Dimitri Pagonis, our church's parish council president, arranged for Theofanis to have some extra special visitors during his stay at the hospital.  As Theofanis' love of soccer spurred him to mention that he "can't wait for soccer to start in the Fall," the manager of The Chicago Fire surprised Theofanis with an official soccer jersey signed by all the professional soccer players on our hometown team! Frank Klopas and Nick Kounenakis (former Greek league and MLS player) visited Theofanis and spread some cheer. Even though he was a bit groggy from his meds, he thought they were cool and plans to take Frank up on his invitation to go to a game and hang out with the players on the field! Theofanis actually wants to play with them, but it's not certain whether the referees will go for that! A million thanks to Demetri, Frank and Nick!
• Thanks to our other visitors, too! Elaine, Kimberley and Pantelis...thanks for the smiles, the goodies, and food!

"TEAM THEOFANIS"

Clippers were buzzing, scissors were styling, and lemonade was flowing!  The Great Shave Off Was A Success!

From 10 am until past 2 pm on Saturday, a steady flow of friends, teammates, family, neighbors and supporters came by the Yianas home to show their support of Theo's fight against Neuroblastoma.  About 200 people stopped by to try Theo's lemonade and to support the "Great Shave Off"!  It was a beautiful, sunny day and Theo, Demetra, and Sophia were super excited to see everyone! What made it even more special was that 40 people got their hair cut!  Some got their head shaved all the way to look like Theo, some got buzz cuts and nine girls cut their long hair which was donated to Pantene's Beautiful Lengths Program!  Kids played, laughed, ate hot dogs and sweets, cheered all those who who gave up their locks for Theo, and everyone celebrated with lemonade toasts!  People wore gold ribbons that symbolize the fight against childhood cancer, and Theo's orange wristbands sold out! And best of all, Theofanis', Demetra's and Sophia's smiles that shone throughout the day warmed and comforted their parents' hearts.

A reporter and photographer from The Chicago Tribune covered the day's events by taking photos and talking to supporters about Theo and his family. (Be sure to pick up a copy of Wednesday's Trib to read all about The Yianas' great day!

An infinite amount of thanks goes to Galinda and Jim Tunney for organizing the party and shaving  heads all day!  Also, To Teja and Pete Kics for all their help in planning the party, too.  Special thanks to Stacy Rokkas for cutting and styling hair for about three hours straight! 

And lots of hugs and kisses to the people who got their hair cut: 

Georggia, Taxiarchi, Pantelis, Anastasi, Val, Leo, Noah, Ben, Theio Jim, Theio Pete, Rowan, Demitri, Theio Kosta, Georgio, Anastasia, Katerina, Evangelos, Aixa, Jimmy, Mr. Brian, Eleni L., Paul, Isabella, Kosta, Dan, Mrs. Tina, Vasilli, Hunter, Constantino, Louis, James, Eleni P., Lincoln, Peter, Pano, Dean, Mrs. Toni, Pete, Paul, and Daddy.

PLUS....Thank you to Father Andrew and Mr. George who could not stop by the party, but who surprised the Yianas family (and the entire St. Demetrios parish) when they showed off their newly shaved heads at church on Sunday! Father sweetly explained to everyone that he's a member of "TEAM THEOFANIS!"

Hugs also go out to the Yianas' dear friends, George Scarlatis and Connor Scarlatis for buzzing their heads at home, too and sending them a photo of their father-son new look.

So, as their exciting weekend came to an end, the Yianas kids happily prepared for Vacation Church School 2011 which started on Monday morning.  They were excited about spending the week at church, seeing their friends, and being surrounded by hundreds of people spreading love and faith. Kosta and Eleni were a bit nervous about Theofanis being exposed to so many people and possible germs, but the great staff members of VCS have taken every extra precaution to protect Theofanis throughout each activity. Because he understood that he has to stay healthy, he was perfectly ok with wearing a surgical mask all day long, too.  And, what's made VCS even more special this year is seeing how all the kids are supporting Theo. You could overhear the kids reassuring eachother that "Theofanis is going to be ok."  Plus, there's news that "The Great Shave Off" has inspired more VCS students such as Sam Hanke and Andrew Petrulakis to join TEAM THEOFANIS. They buzzed their heads to support him and an end to all childhood cancers.

The Great Shave Off was such a success that an encore event has been requested. Keep an eye out for the next event towards the end of summer.  Demetra and Sophia are growing out their hair so it will be long enough to donate in a couple of months! 

THE SPOT

Theo returns to Comer Childrens Hospital on Thursday and Friday for his MIBG scan and CT scan that was previously postponed because of his neutropenic fever. These scans, along with the bone marrow biopsy (which he had last week) are important in determining how effective his treatment has been at killing off neuroblastoma cells. There needs to be evidence of a positive reduction of the cancer. The results should be finalized by the time he begins his third round of chemo on Friday afternoon.  Please pray with his parents that Theo's test results come back good. Starting on Friday, he will be admitted to the hospital for four days and will be getting drugs that he has not received before. This round of chemo will be difficult on him. Please pray with his parents that the side-effects of these chemo drugs are few and that his body is able to stay strong.

 

Theofanis is a fighter and likes to win, as we all know. And, it's important to celebrate the milestones in his treatment. Last week, he underwent a stem cell harvest procedure, where the doctors extracted blood and collected his stem cells for his upcoming transplant. This procedure required sedation to insert a catheter from which the blood is extracted and then re-circulated back into this body. Theofanis had to remain still during the harvest and displayed an incredible amount of bravery as he saw himself connected to this machine. The doctors scheduled two days of stem cell harvest so that they could gather enough stem cells for multiple transplants (if ever needed). Their goal was to harvest approximately 600 million stem cells over those two days. But, as the blood bank doctor and stem cell transplant nurse were reviewing his blood tests taken earlier that day, they commented that Theo had some of the highest blood counts (for stem cells) that they've ever seen. So, the next morning news came in that Theofanis was able to give enough stem cells in a single harvest for four transplants! So, the catheter was removed and Theo didn't need to do another harvest. Mom told him that he has "super duper stem cells!" Let's pray that they are extra super duper so when they're transplanted back, they regenerate into stronger, healthier-than-ever cells!

 

WITH FAITH, LOVE AND PRAYER HE WILL WIN!

 

During VCS, Theo's teachers, Mrs. Deme and Mrs. Demetra, asked Theo and his classmates to each write down something that they experienced that was difficult. Theo wrote "Going through cancer." That was the first time Theo openly wrote about his feelings about his illness. He hadn't written anything about the cancer in his journal at home which caused his parents to worry that he was keeping his feelings bottled up and to himself. At Vacation Church School where he's surrounded by faith, love and prayer, he documented his cancer.

 

Last week, a dear friend underwent a biopsy to remove lumps doctors found in her body. Today, they heard the wonderful news that the tumors are benign.  Eleni and Kosta included her in their prayers to God, Christ, the Virgin Mary, and all the Saints to whom they trustingly beg for Theo's cure. Extra thank yous will be said tonite for putting their arms around Gia and protecting her!

 

Prayers are powerful. God is almighty. God is good.

Psalm 34:1-3

I will extol the LORD at all times;

   his praise will always be on my lips.

My soul will boast in the LORD;

   let the afflicted hear and rejoice.

Glorify the LORD with me;

   let us exalt his name together.