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!