A Sincere Thank You!

Mr. George Nassis
Chairman, "Taste of Greece"

Fall Glendi 2011

St. Demetrios Greek Orthodox Church

Elmhurst, IL

Dear George,

From the bottom of our hearts, we wish to thank you for the time, effort, and hard work you have demonstrated in successfully organizing and executing what was simply a brilliant event.  As chairman, you quickly assembled and arranged a wonderful group of people, adroitly delegated where necessary, and followed through in every department during the event.  So many people came up to us with effusive praise for our Parish and marveled at how a community can come together to show the love and devotion for their children.

We all must take a moment and truly consider what was accomplished this past weekend, not only for the worthy cause of creating awareness for childhood cancer, and, specifically, for Theofani, but also for the fact that, as a Parish, we can genuinely work together to carry out God's will and work together for each other as a family.  Not only was it one of the greatest events in our Parish's history, but we would offer that it was a time that will stand forever in our collective Greek Orthodox community in Chicago and nationwide.  All others, going forward, can recall your efforts and what was achieved as a shining example of all that is good and virtuous.  It is our hope that all will take this example and make it a precedent of future endeavors.

Our thanks also to Father Andrew and Presbytera who have tirelessly supported us through this and who worked so hard along with you to make this event successful.  Thank you also to the committee chairpeople and all the incredible volunteers for their time and devotion.  As we noted on stage Saturday evening, there are no better parishioners than ours at St. Demetrios, and it shone no brighter than at the Glendi.  We can't tell you how many visitors to our Parish felt and said the same thing.  Further, we would like to thank Dimitri Pagonis and the Parish Council for their leadership and Dominick Vassos, who co-chaired this event, for his help and hard work.

Our heartfelt thanks again to you, George, and to all who have helped our Theofanis and others fighting cancer, strenghtening their resolve.  Thank you also for strengthening our Parish and family of St. Demetrios and making it a wonderful example and shining beacon of unity and love for our entire Diocese.

Sincerely,

Kosta and Eleni Yianas

TUMOR REMOVED!

At 6:30 am this morning, Theo was admitted into the pre-op staging area on the 3rd floor of Comer Children’s Hospital where he was prepped for his operation to remove the primary neuroblastoma tumor that engulfed his left adrenal gland.  He was weighed and then examined by four nurses, two anesthesiologists, and two doctors.  He changed into a surgical gown, he selected bubble gum for his sedation mask flavor, and his abdomen was signed.  He politely declined the oral pre-sedative that would help calm his nerves, and announced that he would walk to the OR on his own.  At the entry way of the surgical wing, his parents hugged and kissed him, assured him that they would be near by, and promised that they would be with him when he woke up.  Kosta and Eleni watched Theo walk away towards the operating room holding his plush Cross with the words “Health” embroidered on it, escorted by the two anesthesiologists.  And when the two large steel doors slowly closed in front of them, and their son disappeared from view, Eleni and Kosta felt stunned and petrified and could no longer control their emotions.  They slowly adjourned to the waiting room where they anxiously awaited the hourly progress updates that they were promised.  And as they settled into their chairs, Dr. Liu briefly came by to meet with Eleni and Kosta and answer any of their last minute questions.  Everyone was in agreement that the game plan was simple:  Get all of the tumor out, preferably laparoscopically. 

The operation began at 8:30 am. As each hour passed, Eleni and Kosta’s worries became that much more unbearable.  Would the team be able to get all of the tumor out?  Could Dr. Liu avoid an invasive procedure?  Was Theofanis alright?  Updates came every hour...sometimes by phone, sometimes by nurses that emerged straight from the OR.  At each update Kosta and Eleni were assured that Theo was doing well and that he was strong. They were told the procedure was progressing, and they were told that Dr. Liu was taking his time. He was taking it slowly.  Why?  Was something wrong?  With every passing hour, from the first, to the second, to the third, to the fourth and to the fifth hour into surgery, the fear that something was terribly wrong hovered in their minds.

Finally, at 2 pm, an OR nurse came into the waiting area and told Eleni and Kosta that the tumor was out and Dr. Liu was finishing up!  She explained that it was a much more complicated procedure than anyone initially thought.  When Dr. Liu went in, he discovered that the tumor had wrapped itself around the aorta and all the major abdominal blood vessels and veins.  It was a very difficult maneuver to reach and cut out all the tumor cells while protecting the critical vessels in his abdomen. Yet, miraculously, Dr. Liu was able to resect the tumor completely and he did it all laparoscopically!  Minutes later, Dr. Liu came out with color photos of the tumor and he explained to Eleni and Kosta exactly what he did. He said, “It was a tough one.” And, he even apologized that it took so long! No apologies necessary!  He was able to chisel out the tumor which had surrounded critical vessels, did not harm any existing organs or other structures, kept Theo’s well-being at the forefront, and did this through the aid of scopes and no major incision.  And, as the nurse said, when it got tough, Dr. Liu didn’t give up. He continued on instead of resorting to traditional invasive surgery.  Dr. Liu is truly amazing!  In joy and relief, Eleni hugged him and the head nurse, too. 

Another amazing aspect of this laparoscopic surgery is that Theo lost no blood during the operation. (Again, another benefit towards a faster recovery.) But as the anesthesiologists were keeping close tabs on Theo throughout his nearly 6 hours of sedation, they decided to give Theo a red blood cell transfusion because his hemoglobin was a little low. Post surgery, his counts were strong. But, taking into consideration that the surgery was complicated and took a long time, Dr. Liu decided to transfer Theo to the Pediatric Intensive Care Unit for his post anesthesia recovery for at the very least a 24 hour observation. 

When Kosta and Eleni arrived at the PICU, they were exalted to see their little boy.  Although he had tubes in his nose that ran down his throat into his stomach, an oxygen tube, and a catheter, Theo was resting comfortably.  He was still groggy from the heavy sedation, and they sat and waited for him to wake up. They were warned that he would have a lot of pain when the anesthesia wore off and that there are open orders to administer morphine. But the fact that he only has 3 small pieces of surgical tape on his belly and one strip over his belly button (smaller than a pinkie band-aid), they felt re-assured that Theo’s stay in the PICU would be short.

As the afternoon turned to evening and evening turned into night, Theofanis remained asleep, obviously very exhausted from the surgery, groggy from the anesthesia, and probably uncomfortable with the stomach tube which made him unable to swallow. So, under constant observation in the PICU, his body has started to heal. His temperature is slightly elevated (expected), his abdomen hurts (expected), his breathing is a bit labored (expected), and he drifts in and out of wakefulness (expected).  

At 9:00 pm, Father Andrew Georganas visited the PICU to bless Theofanis. He offered a prayer to God for not only his recovery, but also to the doctors, nurses who were instrumental in his progress towards full health.  He anointed him with holy oil, and it was evident that Theofanis was comforted by Father Andrew’s familiar and loving voice. Eleni and Kosta thank Fr. Andrew and Presbytera Dimitra for their constant love, support, and prayers.

So, what’s next? If all goes well, Theo will be moved to the 6th floor of Comer tomorrow as he continues his recovery from surgery.  Dr. Panigrahi, one of Theo’s oncologists, had his Chemo #6 orders ready to go as soon as Theo was rolled out of the operating room. Happy with Dr. Liu’s amazing work, Dr. Panagrahi expects that Theo will begin his 6th round of chemotherapy on Monday, which will then signal the end of the first phase of Theofanis’ four phase treatment plan.  Also, the resected tumor will be sent for pathology testing.  The doctors should know by the end of next week whether the tumor is necrotic and whether the tissue surrounding the tumor, the marginal area, has any evidence of neuroblastoma cells.  Eleni and Kosta are praying for a necrotic tumor and negative presence of other cells in the marginal tissue.

THE POWER OF PRAYER       

Thank you to all who have sent their best wishes and prayers on behalf of Theofanis.  We are all very fortunate for your friendship at this time.  Thank you to Dr. Liu and his staff at the U of C.  The tumor is finally out and that is now a prayer that has been answered.  Thank you, O Heavenly Father! Love, Eleni and Kosta

GET THE TUMOR OUT!

Theo has earned over 200 Courage Beads!

SURGERY TO REMOVE THE TUMOR

Tomorrow morning, Thursday September 15^th at 6:00 am Theofanis will arrive at Comer Children’s Hospital and be prepped for surgery to remove the primary tumor located on his left adrenal gland. Dr. Donald Liu, Surgeon-in-Chief, will be resecting the cancerous cells from his abdomen. The Yianas Family is asking everyone to say extra special prayers for our brave Theofanis. Please pray that God grant Dr. Liu and his surgical team the ability to safely and completely remove every single neuroblastoma cell from Theo’s abdomen. Please pray that God grant Theofanis the strength to heal and recover from the surgery quickly and comfortably. Please pray that God console Theo’s fears and replace them with reassurance that he is getting better. And please pray that God protect Theo tomorrow and always.

KEEPING HIM HEALTHY AND STRONG

Eleni, Kosta and Theo met with Dr. Liu last week to go over the surgical plan. Since Theofanis’ platelet level last Tuesday (September 6th) was 44 and shy of the 100 count that would allow him to be ready for the tumor resection, Dr. Liu had to wait to lock in a surgery date until his counts fully recovered. The one thing that Dr. Liu confirmed was the date of his next blood test, and the other thing Dr. Liu was insistent on was, “Keep him away from germs.” So no school, no soccer, no outings. But how do you keep a six year old boy, who by the way is feeling great, in seclusion? The answer is…you can’t.

Eleni and Kosta tried their hardest to keep Theo away from the nasty bugs that could compromise his immune system. As daily emails were coming in from the school nurse and supportive parents letting Kosta and Eleni know that their kids were fighting off colds and fevers and coughs, etc., it was clear that Theo wasn’t going to school. Instead, he kept up with homework sent home by his teachers, he read books, and generally kept busy during the day while his sisters were at school. Speaking of Demetra and Sophia, as each of them independently came home from school with slight sniffles and sneezes, the task at hand became keeping them a good distance away from their brother. So, how do you keep loving siblings away from each other? The answer is…you can’t.

Knowing that Theofanis’ white blood cell count was a low 1.3, Eleni and Kosta had to balance the “No, sweetheart, you can’t go…” statements with “Ok, let’s go for a little bit…” Because for as much as it’s important to keep his immune system strong and healthy, it’s as important to keep his emotional wellbeing at it’s highest point. So, Theofanis visited his friends’ “Fight Childhood Cancer” lemonade stand in Elmhurst, hung out with his cousin for a little bit, squeezed in a few quarters at his soccer game on Saturday, visited the eye doctor for a checkup (eyes are good and healthy, by the way), and he went to church and served in the Altar on Sunday.

Thankfully, Theofanis was able to stay healthy and relatively happy! It wasn’t until a few nights ago when he told his parents that he’s scared about the surgery that Kosta and Eleni were reminded about how valiant their little boy has been through every step of his cancer treatment.  And they were also reminded of how smart their little boy is because he inherently understands how critical it is to get the tumor out of his belly.

THE SPOT

On the eve of Theofanis’ surgery, the Yianas family is nervous but yet anxious for this milestone in Theo’s recovery. There will be a sense of relief that the origin of those nasty neuroblastoma cells are finally out of his body. Plus, the tumor that they remove will provide them with answers to many of the questions that have been haunting them. Is the chemo working? Is the cancer being killed? Are there any prognostic indicators? In addition to getting more information on the genetic makeup of the neuroblastoma, the pathology analysis is a critical step in understanding how the cancer cells are reacting to the chemotherapy. Plus, the results of that report will likely be indicative of what's happening in the tumor in his elbow.

Kosta and Eleni desperately want to know what's going on in their son's body because as of now, they have not had any absolute confirmation that the cancer is dying. The CT scan that was done last Tuesday showed no significant change in size of the tumor. This was a blow to Eleni and Kosta. As tears fell from their eyes last Tuesday when Dr. Liu told them that the tumor did not shrink, they tried to refocus on the positive news that (1) the tumor did not grow and (2) no new tumors appeared. And in the days that followed, separate calls poured in from Dr. Cohn and Dr. Panagrahi who understood the worry Kosta and Eleni carried. They told them to not be too concerned and that the purpose of CT scan is to give data and direction to the surgeon. The doctors told them to concentrate on the clinical signs that Theo's arm no longer hurts. And, they were told that there may be signs of calcification on the tumor, which would be a good thing.

Last Tuesday's disappointing CT scan, however, did not overshadow the good news that Dr. Liu delivered to Eleni and Kosta. Dr. Liu annouced that his plan is to remove Theo's tumor laparoscopically! Eleni and Kosta were amazed and shocked.  And actually, they were not the only ones surprised because Theo's oncology team was thrilled to hear the news as well!  Resecting the tumor laparoscopically means that it’s less invasive, there's lower risk of infection, faster recovery, and no ICU!  Dr. Liu explained that his plan is to make two small incisions in his belly and remove the entire tumor in one piece through his belly button! Amazing! He then warned that depending on what he sees inside, there may be the need to resect it via traditional surgery. But, he assured them that he would do his best to get the tumor out laparoscopically. God, please grant Dr. Liu and the surgical team strength and wisdom to make the right decisions, and please bless the hands of his surgeon so that the tumor is removed safely and completely.

Chemo #6 will immediately begin as soon as Theofanis recovers from his surgery.

WITH LOVE FAITH AND PRAYER HE WILL WIN

On this day, the Elevation and Exaltation of the Holy Cross, Saint Helen, the mother of Saint Constantine, found the Holy Cross upon which Jesus was crucified.  The Holy Cross provides the strength upon which to carry us through both difficult and joyful times.  We are thankful that Theofanis was able to attend today's liturgy, the day before his operation.

As preparations are in full swing for the Saint Demetrios Greek Orthodox Church Fall Glendi and fundraiser on September 24th and 25th in Elmhurst, the Yianas family continues to feel blessed by the love and support that is pouring in for Theofanis.  The Glendi will benefit Theofanis and raise awareness of childhood cancer. Many family and friends at Saint Demetrios are contributing their time, talents, and donations for this event to be a success.  The community support is genuinely something to marvel and truly provides comfort and encouragement to the Yianas family with every card, good wish, thoughtful deed, kind note, and, especially, fervent prayer.

There are many fun, family-oriented events scheduled for next weekend. In addition to the food, music, dancing, talent show, crafts and games, there will be an emphasis on raising awareness of childhood cancer. On Saturday, September 24th at around 5:30, doctors from Theofanis' oncology team from the University of Chicago will be at the Glendi and will speak about Neuroblastoma and the research they are conducting to find better treatments and to bring us closer to a cure. Dr. John Cunningham, Section Chief of the Department of Pediatrics for the University of Chicago, Dr. Panigrahi and Dr. Pinto are planning to attend, along with others. Dr. Cunningham is also the head of the Stem Cell Transplantation group and will oversee Theofanis' stem cell transplant when he reaches that milestone.

Also, throughout the day on Saturday there will be head shaving and hair cutting for Pantene's Greath Lengths Hair Donations.  A dear friend of the Yianases will be donating $10 for the first 50 heads shaved/cut.  Many others are getting sponsors for their own head's shaving, too. Please be sure to sign up if you are planning to shave or donate hair during the Glendi. Demetra and Sophia have already made their appointments!

So, the Yianas family hopes to see you next weekend in Elmhurst! The plan is that Theofanis will have just completed his 6th round of chemo and he will be able to attend the Glendi with his family. And, on Sunday, September 25th, Kosta and Eleni invite you to attend the Saint Demetrios Divine Liturgy during which the Artoclasia, the blessing of the five loaves, will be celebrated for the health and well being of Theofanis, his family, and all his wonderful friends that are alongside him during his journey towards full recovery!

The love that the parish has for Theofanis and his family is more than evident, more than obvious, it is gleaming.  As mentioned, emotional well-being is paramount, and Theofanis could not have a better support system.   

September is Childhood Cancer Awareness Month.

The Yianas family, along with their friends, family and entire church community is rallying to bring visibility to the thousands of courageous children who battle pediatric cancer, including their own much loved warrior, Theofanis.

By observing Childhood Cancer Awareness Month, you will become an advocate for the brave children who are unfairly stricken with this disease, their families who unceasingly fight alongside them, and the support organizations that provide compassionate assistance to patients and families.  And very importantly, you'll bring awareness to desperately needed and under-funded research programs whose ultimate goal is to eradicate childhood cancer forever. So, please observe Childhood Cancer Awareness Month and show your support for Theofanis by proudly wearing your THEO bracelets each and every day!

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

Several weeks back, the Yianas family received a call from Father Andrew Georganas with news that the Saint Demetrios Parish Council unanimously voted to host the 2011 "Taste of Greece Fall Glendi" for the benefit of our beloved Theofanis. They lovingly and graciously announced that all the net proceeds from the event will benefit Theofanis' fight against Neuroblastoma. The event will be held on Saturday, September 24th and Sunday, September 25th on church grounds in Elmhurst.  Humbled by their church's generosity and immensely grateful for their support, Kosta and Eleni have established The Yianas Family Fund to help defray medical costs and most importantly, make donations to Neuroblastoma research for finding better treatments and ultimately a cure! 

So to all the wonderful friends and family, and to all the volunteers who are giving their time, talent and effort to this event, you are doing more than raising awareness of childhood cancer, you are bringing hope and comfort to Eleni, Kosta, Theofanis, Demetra and Sophia. You are helping answer their daily prayers that a cure can one day be found!

THE SPOT

Theo's recovery after Chemo #5 has been fairly good. The first few days after coming home, he dealt with some nausea, vomiting and stomach pains.  He was taking three different anti-nausea medicines in two-hour increments around the clock. This made him extremely tired and weak.  But as the nausea waned, Eleni and Kosta slowly took Theofanis off the medication and were carefully monitoring for any signs of a fever. His counts were stable, then drastically fell as he entered the 7-10 day critical point where he was neutropenic. His body managed to fight and his temperature managed to stay below 99.5, but his counts lunged low to the point where he made two visits to the hospital for blood transfusions. On Tuesday, he went to the SPA for red blood cells and then on Thursday he went in for platelets. With some aches and pains in his tummy and some sniffles throughout the week, needless to say, Theofanis was not able to be in school much. Theo did go to his first soccer game of the season when his counts were stable. His energy was expectedly low, but he still played very well.  It continuously amazes his parents that, except for his hair loss, it is hard to tell that this beautiful child is enduring such a great burden that so many would shudder to accept.

Theofanis is scheduled for a CT scan on Tuesday, in preparation for his upcoming surgery. The scan will focus on his adrenal gland near his left kidney, where the primary tumor is located.  Eleni and Kosta's fervent and constant prayer is that the scan will show that the chemo treaments have reduced the size of the tumor and that it can be completely resected. Eleni and Kosta will then meet with Theo's surgeon, Dr. Liu to review the surgical plan to remove whatever remaning cancer cells of the primary tumor. Theo's surgery date will then be confirmed. Dr. Liu implanted Theo's central line in his chest, and Eleni and Kosta have much confidence in his experience and ability.  After Theo recovers from the operation, then he can begin Cycle #6 at Comer.

 

THEO HAS BEEN SMILING!

 A stranger sent a smile in the mail this week, and a few friends are squeezing some lemons this weekend...all for Theo. 

A package arrived in the mail from an unfamiliar address in Missouri. It contained two "Happy Hats" and a note that read, "I said a prayer for you while I made this and I wanted to put a smile on your face today. I hope it helps to know that a stranger is thinking of you and hoping that you get better soon. -Kathy" So, to Carol Chiligiris' friend, Kathy, who heard about Theo's fight against Neuroblastoma, thank you for putting a smile onto Theo's face. He especially loves the Angry Birds hat! His sisters love them, too!

A few 3rd grade girls from Emerson Elementary School in Elmhurst decided to set up a lemonade stand in honor of Theo. Not all the girls know Theo, but they want to help him fight cancer, nonetheless. So, stop by the corner of Fay and West Avenues in Elmhurst for a glass of lemonade. Be sure to tell Lea P., Georggia S., Maya R., Olivia Q., Arianna C. and Kayla R. that they are kind and good friends. Tell them that you are proud of them, too. Because that's what Theo and the Yianas family plan on doing Saturday when they visit the girls' lemonade stand!

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.