Day Zero of Stem Cell Transplant #1 - THE BIG DAY!

The day has arrived. After much preparation and anticipation for "Day Zero," Theofanis finally received the stem cells which were harvested  from him back in June. Technically, the procedure is referred to as an Autologous Stem Cell Transplant.  He is receiving is own cells back into his body.

Today, October 26th is the feast day of Saint Demetrios, the patron saint of Theofanis' church in Elmhurst where he serves in the Altar. On this day the Yianas family also celebrates the Name Day of Theo's sister, Demetra. So, when Kosta and Eleni received confirmation that Theo's Stem Cell Transplant would be on the Feast Day of Saint Demetrios, they felt hope an comfort that Saint Demetrios would watch over their son. What a blessing it is to have this important medical event take place on such an important day on the church's calendar!  

A celebratory breakfast on Day Zero!

Day Zero started much the same way that the previous few days had started. Theo had a restful night's sleep and woke up excited to be receiving his "Supercells. "  He knew that these are the healthy cells that would take over his body. And, these are the cells that will rescue his system from the nasty medicine had been receiving the week prior.  He woke up hungry and enjoyed his breakfast. Mommy, who had stayed with him overnight, made him Mickey Mouse pancakes while Daddy was home with the girls, tasked with quickly getting them ready for school so that he could get to the hospital by 10 am, the scheduled time for the transplant. infusion.

Kosta dropped Demetra off at school in Palatine and then brought Sophia to Pythagoras in Elmhurst.  As the Divine Liturgy was beginning on this special day to commemorate St. Demetrios, Kosta lit a few candles and offered a few prayers, a special one specifically for his son's Stem Cell Transplant. He then left the church and headed to the hospital to be with Theo.

Meanwhile, at the hospital, preparations were in full swing. Theo was given some Benadryl to prevent any possible reaction to the preservative that kept the cells "fresh" while they were frozen, and he was given Tylenol for any possible fever that may spike. He was connected to all the monitors, checking blood pressure, heart rate, oxygen level, etc. And, Theo's stem cells were delivered from the area where they were banked for the past four months, frozen and ready to be rendered active for use.


Kosta arrived just before 10am to see a mobile laboratory right outside Theo's hospital room with a technician thawing and preparing his son's stem cells.  There was a lot of buzz in the area and much activity as the RN and transplant coordinator, Patty, was overseeing the nurses and prepping Theo for the big moment. Daddy then walked into Theo's room with a huge "Happy Transplant Day" sign made lovingly by his sisters.

Theo was ready and Patty indicated that the time had come.  The technician brought in the bag with his cells and hung them next to his bed.  The name and patient code on the bag were checked and double-checked to match the name and patient code on Theo's wristband. It was a small bag with a shiny bright red color, gleaming with a wonderful and inviting hue, an attractive aspect that it commanded attention.  Eleni and Kosta could not stop looking  at the bright red bag of stem cells that would give Theo's body a medical new life.  

At exactly 10:17 am, Patty called the time while she started the pump, and 200 million cells began to return to Theofanis' body.  These cells have the incredibly important responsiblity of rescuing and rebuilding new cells in Theofanis' bone marrow and resetting his body's immune system.

The infusion itself lasted about forty five minutes.  Every few minutes, Theo's vitals were taken. Theo's temperature, heart rate, and blood pressure stayed constant. Nothing went up or down. The numbers on the monitors did not flinch. The alarms were silent. Patty was genuinely amazed and repeatedly called him a model patient.  By 11:15, Patty had left Theo's room and the infusion was officially complete.  His close monitoring would continue for the next few hours, but Theofanis had no issues.  The transplant went well, in fact, it went very well! His cells felt right at home in their rightful place!

So, throughout the morning, doctors and nurses alike congratulated Theo on a transplant well done! And, Amy from Child Life delivered another "Happy Transplant Day" sign, a balloon, gifts and a huge 100 day Countdown Calendar. Now, the clock starts ticking Day +1, +2, +3, etc.

The rest of the day was a bit anticlimactic as the excitement of the morning's activity subsided into the afternoon.  Eleni left to go pick up the girls from school.  Theo was in a great mood.  "I'm glad I got my Supercells back!" he exclaimed.  Yet, as the day wore on, he grew tired and the manifestations of the previous weeks' chemotherapy were becoming more and more evident. Although the nausea was not as bad, Theo was beginning to suffer from mouth sores that were becoming more painful.  Unfortunately, the pain likely will get worse before it gets better.

As Day Zero wound down it was clear that Theo was tired.  And in spite of the exciting events of the day, the emotional strain of being hospitalized made Theo realize how much he missed his sisters, how much he missed being home, and how much he missed doing the things his family would do together. During the Yianas family's nightly video chats via Face Time, Theo became upset when he realized he likely would miss the girls' dance recital of The Nutcracker Suite in December.  Daddy tried to comfort him and Mommy comforted the girls at home while they still were together via Face Time.  Theofanis wants so badly to be able to have the freedom to go to these events, and instead feels trapped in his hospital room. So Eleni and Kosta focused on and reinforced the fact that what is going on right now is temporary. They are carefully explaining the difference between temporary and permanent, so that all their kids, especially Theo, understand. "The hospital, the medicine, the pain...this is temporary. But, Theo, your "Supercells" are working to make more and more healthy cells. That is permanent!"


May the blessings of St. Demetrios be with all of us both now and always. Xronia Polla to all Demetris and Demetras and to our wonderful Parish of St. Demetrios in Elmhurst.

Day -1 of Stem Cell Transplant #1

This adorns the wall at the entrance of Comer 6,
the hospital's hemotology and oncology floor.

It was a restless overnight for Theofanis. He woke up several times and became nauseous more than once. So, when daylight emerged and Theo sat up in bed and looked around to see what he could do for the day, Eleni was a tad bit surprised at how good he appeared to be feeling. He asked for homemade waffles, but was ok with the frozen kind as long as they were warmed up on the panini griddle with lots of butter. He didn't eat much, but mom praised him for wanting and trying to eat.

Theo was in a good mood all day. Today was Day -1 and Theo knew it was a "day of rest." No medicine today. (Well, besides the anti-nausea, anti-fungal, anti-bacterial medicines he'll be taking on a daily basis for a long, long time.) And his good mood was reinforced with the reminder that tomorrow is THE BIG DAY! The day he gets his super cells back! Doctors and nurses alike commented on how exciting tomorrow will be!

So, today, Theo had a visit from a tutor who helped him finish some homework that was lingering in his backpack. The art therapist also came by to help with a pumpkin project. He completed 1/2 of his Hogwarts Castle Legos Set. He laughed with nurses and doctors. He asked his mom if his eyebrows were gone because he couldn't feel them anymore. 

A light-hearted event occurred mid-day when a "sitter" entered Theo's room and announced that she was there to hang out. She pulled up a chair, sat down and settled in. And as Theo and Eleni both stared at her, wondering, "why is she here?" a nurse came in to tell her that she was in the wrong room.

But on a more serious note, Eleni had the opportunity to meet with one of the Pediatric Psychiatrists. Although the team visited Theo and dad the previous day, Eleni wanted to talk to them about about two things: (1) how to keep Theo's psychological state of mind the healthiest it can be while he's going through the two transplants and pending 140+ days of isolation and (2) how to address Demetra and Sophia's worries and concerns, as Deme has already expressed feelings of fear, worry, and sadness. So, after a good long discussion with the doctor, Eleni truly for the first time, felt a sense of comfort that she and Dean are doing the best that they can to help their family cope and get through this unimaginable fight to cure their son of cancer. Yes, they are told by many kind and loving people--and all of you who everyday show them support and encouragement--that they're doing a good job along each step of this journey. But, when the psychiatrist was offering suggestions, ideas, and tactics, Eleni thought, "we are doing that." And when she cited specific examples of how she and Kosta have dealt with certain situations, the doctor nodded approvingly. 

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

On the eve of Theofanis' Stem Cell Transplant, his "rebirth," the Yianas family is asking everyone to join them in prayer for a successful stem cell rescue and cure for Theofanis...

Heavenly Father, physician of our souls and bodies, Who have sent Your only-begotten Son and our Lord Jesus Christ to heal every sickness and infirmity, visit and heal also Your servant, Theofanis, from all physical and spiritual ailments through the grace of Your Christ. Grant him patience in this sickness, strength of body and spirit, and recovery of health.

Lord, You have taught us through Your word to pray for each other that we may be healed. I pray, heal Your servant, Theofanis, and grant to him the gift of complete health. For You are the source of healing and to You I give glory, Father, Son and Holy Spirit. Amen.

O Lord our God, Who by a word alone did heal all diseases, Who did cure the kinswoman of Peter, You Who chastise with pity and heal according to your goodness; Who are able to put aside every sickness and infirmity, do You yourself, the same Lord, grant aid to Your servant, Theofanis, and cure him of every sickness of which he is grieved, and send down upon him your great mercy, and if it be Your will, give to him health and a complete recovery, for You are the Physician of our souls and bodies, and to You do we send up Glory: to the Father, Son and Holy Spirit, both now and forever, and to the ages of ages. Amen.

Day -2 of Stem Cell Transplant #1

Monday morning. As most kids were starting their school week, Theofanis was starting his chemo. Like yesterday and the day before, the chemotherapy bag filled with Cyclophosphamide and the IV push of Mesna were connected to the pumps on his IV pole. Today was his last dose of chemo for Stem Cell Transplant #1. But today, a new list of profilactic medicines was added to his chart:  anti-fungals, anti-bacterials, anti-pneumonias, etc. They are getting his body ready to receive back his stem cells, his very precious stem cells.

The anti-nausea medicines started to take effect. Zofran, Ativan and Benadryl eased Theo's nausea to the point where the vomitting subsided and he only threw up a few times throughout the whole day. His GI system is stabilizing as well. He felt better enough where he worked on his newest Lego project: Hogwart's Castle.  Child Life brought some entertainment to Theo's room as well. A magician put an inquisitive smile onto Theo's face as he watched him do some card and coin tricks.  He was still very sleepy throughout the day and evening. But, he did get out of his bed and walked to the other side of the room to lounge on mommy and daddy's pull-out couch/bed. This small change of scenery perked him up a bit and even spurred him to claim that "it's comfortable!" (Um, Not really.)

One of the most exciting events of the day happened at dinnertime. Eleni brought an electric griddle from home, whisked up some batter, and flipped fluffy pancakes right in the hospital room. Theo ate two whole pancakes, syrup and all, while FaceTiming with his sisters. He ate and kept down two whole pancakes!!!! WooHoo!

Pleasantly surprised that he's even eating, his doctors all continue to say that Theo's looking good and doing well.  

Day -3 of Stem Cell Transplant #1

Theofanis woke up on Sunday morning with both his parents by his side. His chemo started first thing in the morning with Cyclophosphamide and Mesna. All three anti-nausea medicines were being given to him round the clock, but the vomitting continued. "Why is this happening?" he would ask. Focusing on the moment, Eleni and Kosta told him, "to get the yuckies out," and used every distraction to avoid the broader question that today cannot and may never be answered.

Theofanis spent the day in bed, dozing in and out of sleep. Not even a Bears victory kept his attention. He FaceTimed with his sisters again that evening, but the video chat was short. He simply was not feeling good at all.

Day -4 of Stem Cell Transplant #1

The weekend began and the tiresome showers were thankfully coming to an end. Theofanis was being bathed every six hours in order to protect his skin from the chemo drug called Thiotepa which he received the past three consecutive days. This particular drug is excreted from the skin and can cause rashes. Although dry, his skin did not flare up. Except, though in the area around the dressing that protects his central line where it had become extremely irritated from the constant removal and placement of adhesive tape. This was painful for Theofanis. And although he was super brave when the nurses would put alcohol to sterilize that area of his chest, you could tell that Theofanis just wanted to scream.

But, Theofanis didn't feel like really screaming, either. He was nauseaus. He was throwing up. He didn't want to eat. He was groggy from the anti-nausea medicines, too.

And, for as much as Kosta tried to keep him busy throughout the day by doing some homework or legos or Wii, there wasn't much energy in Theo to do much of anything. He watched sports and caught some of the World Series, though. Eleni and Kosta were both able to spend the night with Theofanis while Demetra and Sophia had a sleepover with their friend Stefanie. And he did seem to be comforted by the fact that both his parents were with him overnight.

So, on Day -4 Theofanis received a high dose of Cyclophosphamide and Mesna. Day -4 was not a great day for him. The doctors, however, continued to affirm that they believe that so far, he's doing great.

Day -5 of Stem Cell Transplant #1

Once again the day started at 4 am with a chilly shower, clothing and linen change. And once again, the Thiotepa arrived and was hung promptly at 9 am. But, today's "stem cell medicine" prescription was slightly different. On Day -5, Theo was given three doses of chemotherapy. In addition to Thiotepa(his last dose by the way), he received a high dose of Cyclophosphamide and Mesna. All were administered in the morning. All were done by late morning. Besides being "bummed," he tolerated the immediate infusions well.

Well, his "bummed" attitude didn't last too long this particular morning. All because he was getting an exceptional visit from his sisters Deme and Sophia, who got the ok to miss school. None of the kids really understood how rare it was for the three of them to be together in Theo's isolation room. Kosta and Eleni, though, knew how precious it was to have the three of them together. Theofanis' white blood count was unusually high at 5.0 and the girls had no signs of a cold, cough or virus. So, mom and dad felt comfortable that the risk of an infection was low. And, as they later found out, the doctors also made sure that the girls exhibited no signs of a cold. Again, it is so rare for such an exception to be made that even our head nurse in charge of the Stem Cell Transplant made a comment that she never meets her patients' siblings.

So, the family huddled together in Theofanis' hospital room to take a family portrait. As the photographer snapped photos, the Yianas family smiled and laughed. And they were reminded that they had many reasons to smile and laugh!

One of the first things that Demetra and Sophia (as well as all the doctors, nurses and staff members) noticed upon entering the hospital room that day was not the 100 or more cards taped to the walls of his room, but instead Theo's most recent Legos creation. The Star Wars Tantive IV command center. Made of 1408 pieces, it was rather impressive. But, the most impressive thing of all was that Theo had started it and completed it in less than two days!

So, the Yianas kids hung out for a few hours on Friday. They played Wii together, they painted together, and they ate lunch together. They even played "Body Parts Bingo" via the direct video feed from the playroom, too. And when it came time for the girls to say good-bye, Kosta and Eleni reminded everyone that they would "see" eachother every night via Facetime. Although there was some comfort in those words, each of the kids knew how difficult the coming weeks would be. And the tears each of them shed later that night proved it.

Plus, for Theofanis, later that night, the classic side effects of the high dose chemotherapy surfaced. The nausea and vomitting began. The "yuckies" were starting to take over.

Day -6 of Stem Cell Transplant #1

Theofanis continues to feel good as therapy continues into the second day of therapy.

The day began at 4 am when the overnight nurse woke up Theo for his shower. A groggy mom and son sleepily headed to the bathroom and rinsed off the secreted chemo from his body while his nurse changed his bed sheets. His clothes and dressing was changed and he quickly fell back asleep.

Then, promptly at 9 am, the Stem Cell medicine bag arrived and his second day of high dose chemo began. Like yesterday, he was given Thiotepa for two hours.

Then, the day continued on as he did some homework, made some legos, watched some TV, and ate a little bit, only to be interrupted by the continuous mouth rinses, showers, clothing and linen changes.

But, amongst the steady flow of activities, boredom started to settle in. And sadness, too. Reality struck in the evening when Theo was video chatting with his sisters and dad via Face Time and he calmly announced, "I hate my life." And Eleni and Kosta, on opposite ends of the ipad screens, tried to hold back their tears and re-assuringly tell their son and daughters that this is temporary and the days will go by quickly and that everything will be ok.

And then Kosta and Eleni quickly turned the focus on the good news that they received earlier in the day. The doctors made a special concession for Friday and approved a "quick visit" by Theo's sisters. The nice folks in Child Life organized a family portrait day with an group called "Flashes of Hope." A photographer would be visiting the hospital to take photos of patients with their parents. And, when Kosta and Eleni asked if Deme and Sophia could come, the request had to go through several stamps of approval. IF the girls were absolutely healthy (no coughing, runny noses, sneezing, fever, etc.) then they could come for the photo! Hurray! The family would be together tomorrow, even for a short period of time!

Day -7 of Stem Cell Transplant #1

On Wednesday, Theofanis began next phase of his treatment: Stem Cell Transplant #1

An autologous stem cell transplant for the treatment of high risk Neuroblastoma involves high dose chemotherapy and re-infusion of the patient's own stem cells which were harvested after Chemo cycle #2.

Some things to know about Theofanis' autologous stem cell transplant:

• Theofanis stem cells have been frozen and have been stored at the the U of C Medical Center.
• There is no surgery involved. His stem cells will be hung on his IV pole and re-infused through his central line, similar to a blood transfusion.
• Theofanis will be given high doses of chemotherapy drugs for a period of 5 days.
• These drugs will kill and suppress all new cell growth to the level that they cannot recover on their own.
• Theofanis will "rest" for two days during which he will not receive any additional chemotherapy.
• The stem cell transplant is really a "stem cell rescue." His own stem cells will rescue the killed marrrow that cannot recover on its own.
• Some people call it a "rebirth."
• Until he recovers, Theofanis will have zero immunity, and that is why he is in isolation and has extreme dietary restrictions to prevent any type of bacterial, fungal or viral infections.

There is a daily count-down and a count-up during the duration of the stem cell transplant:

• The first day of chemo is called Day -7
• The second day of chemo is called Day -6
• The third day of chemo is called Day -5
• The fourth day of chemo is called Day -4
• Fifth day of chemo is called Day -3
• The next day is a day of rest and has no chemo and is called Day -2
• And the day following also is a day of rest with no chemo and is called Day -1
• The day Theo gets re-infused with his own stem cells or "Super Cells" as he knows them to be is called Day Zero.
• Then, his 100+ days of recovery begins and the count-up begins: Day 1, Day 2, Day 3, etc.

Kosta and Eleni aren't quite certain of the day count now that Theofanis is following a tandem transplant protocol. They are calculating that the entire process including isolation will be approximately 144 days. But what they are certain of is that Day Zero falls on October 26th, the Feast Day of Saint Demetrios, the patron saint of their beloved church and their first-born daughter. This most holy day will mark the rebirth of their son's cells and prayerfully and hopefully, the end of every unwanted cancer cell in his body.
 
On Day -7, Theo received a drug called Theiotepa over a 2 hour infusion period.

Theo also received a red blood cell transfusion because his hemoglobin was a low 7.7 upon admission.

As profilactic measures against side effects, Theo was given anti-nausea medicines, three different oral rinses (4x/day each), a stomache soother, and was required to shower every six hours to get rid of skin secretion from this particular chemo.

By the way, Eleni and Kosta are calling the drugs he is getting during this phase of treatment, "medicine for the stem cell transplant." Psychologically, Theofanis has had enough of "chemo". The challenge now is to make sure the staff remembers to not call it chemo in front of him. There have already been slips, but Eleni explained to him that the staff takes as much care with these drugs as they do with chemo, so that's why they call it that sometimes.

Aside from the strict regimented schedule, Theofanis had a rather good day. He was feeling good, as he usually does on the first day of therapy. He did some homework, he ate well, he started his 1400 piece Star Wars legos set, he played Wii, and he played football on his iPad and made enough touch downs where his score ended up being 100 to 0. Bears vs. Lions. (Remember, I said it was a game, not reality.) His doctors visited him, and he was taken care of by one of his favorite nurses, Abby. He chatted with his sisters on Facetime, too. Eleni spent the day and night with him, and Kosta visited for a little bit. And finally, every doctor, nurse, child life specialist, and staff member who came into his room commented on his decorations and all the get-well cards and "You Will Win" posers taped to every wall of his room. "You have a lot of people who love you a whole lot," they told him. And yes, that is so very, very true!

Day -7 is done!

ps. Please be sure to read the previous blog post which captures all the events leading up to his first day of his first stem cell transplant.

IN GOD'S HANDS

Relief, surprise, and fear fell upon the Yianas Family during these last very emotional seven days leading up to Theofanis' admission for his Stem Cell Transplant.  And, with an overload of test results and information that they needed to process, Eleni and Kosta had to make the most difficult decision of their, their son's and their daughters' lives. 

Since his discharge from Comer after being neutropenic from his last round of chemo, Theofanis slowly recovered his strength, regained some stamina, and started feeling more like himself with each passing day. The side effects from Chemo #6 were by far the worst he's had to deal with since diagnosis. Coupled with post-surgical pain and healing, he lost a significant amount of weight, too. There was a period where his parents contacted their nurse to request that Theo be placed on a TPN (IV nutrition), but when they found out that he would have to be re-admitted to the hospital for at least 24 hours, they retracted their request and doubled-down on forcing Theo to eat. They even bribed Theofanis to eat a banana in exchange for a $100 bill. It took nearly 30 minutes, but he ate it! With Carnation Instant Breakfast shakes, Theofanis regained about 4 of the 10 pounds he had lost. 

So with Induction Therapy over and Stem Cell Transplant and Isolation on the horizon, the Yianas family tried to get in a few Fall family activities that created a sense of normalcy for the family. They visited a pumpkin patch with cousins, enjoyed some carnival rides, and put in a round of indoor glow golf. They hung out with friends and family and celebrated Fall with the Tunney and Kics families, which has become a tradition over the past several years. Theofanis also served in the Altar at church and even was the youngest altar boy to slice the arto (blessed bread).

But the most exciting highlight of the past couple of weeks was his last soccer game of the season. He joined his team, the Blue Sharks, at an indoor field on Saturday. Theo hasn't practiced or played much this year (only 1/2 the games), and actually per the strong suggestions of his oncologists, shouldn't have played at all.  It was evident Theo was tired. He would run and quickly get tired. He'd raise his hand after a few minutes of field play asking his coaches for a break.  Although he ran much slower than usual, what didn't slow down was his passion to win. (Remember, in the first blog posting you learned that Theofanis likes to win.) So, with only minutes left remaining in the game, Theo put on his game face and kicked in the winning goal for his team!  SCORE! 2 - 1. He raised both his arms over his head, smiled and walked off the field. The crowd erupted in cheers and applause. Emotions were rampant. This child fighting cancer, who has undgergone six rounds of chemotherapy, a major surgery, and has tubes hanging from his chest, just got back a bit of his childhood. It was an incredible moment. And, it was a reminder for Kosta and Eleni that their son can do anything!

THE SPOT

Theofanis was scheduled for a full and complete battery of tests, scans and work-ups in preparation for his next phase of treatment in his battle against Neuroblastoma.  And, the results of these tests would dictate the next steps in his journey.  So over a period of two days, Theofanis underwent MIBG scans, CAT scans, blood tests, urine tests, organ function tests, scans for viruses, bacteria and fungus infections, an EKG, an Echo, an audiogram, a bone age test and a bone marrow biopsy. These tests would show if the cancer is gone or decreasing or spreading. And, these tests would show if he's ready to move on to the next phase of the COG (Children's Oncology Group) treatment protocol, which is Stem Cell Transplant. 

There was little doubt that the Theo's test results would not show improvement. His resected primary tumor had matured into benign ganglioneuroma cells.  The pathology report proved that the cancer was dying off. But, with cancer, there is always doubt and uncertainty. And as we all know, Neuroblastoma is unpredictable.  So, late last week, Dr. Cohn called the Yianas' with test results as they were coming in.  The MIBG scan (scan that lights up neuroblastoma cells) showed no uptake in the abdomen. The area where his primary tumor resided showed no Neuroblastoma cells. This was great news.  The MIBG also showed a significant decrease in uptake in the left elbow, the metastatic site where Theo's cancer was originally discovered. Dr. Cohn said it lit up just a "teeny weeny."  This was also good news. It would have been better if it was completely gone, but it's still news that the Yianas' were happy to hear. The CT scan of the abdomen also showed that there was no tumor left in the left adrena area. It showed some fluid in the area of the resected tumor which is consistent with surgery. The bone marrow biopsy was still pending. 

Then, Dr. Cohn proceeded to tell them that they found a "surprise".  She told Eleni and Kosta that the CT of his sinuses showed a tumor behind his left cheek bone that is 15 mm X 10mm. This tumor was undetected in any previous scans. It did not light up on any of the three MIBG scans Theo had. It did not show up on the intial bone scan either. Dr. Cohn proceeded to explain that tumors in the head are usually visible or show symptomatic signs. And since Theo had no pain, a CT of his head was never done before. Basically, they prefer to not radiate the head or brain if they don't have to. With this news of the newly discovered mass came the questions of (1) is it new growth or was it there from the beginning (2) are there active or differentiated cells and (3) how should it be treated? Dr. Cohn told them that she would need to consult with the radiologist, and ENT and other colleagues and would call them the following day. When Kosta and Eleni hung up the phone, Theofanis immediately asked, "What did Dr. Cohn say?" They told him that the cancer in his belly is gone and that only a teeny bit showed up in his arm. But they also told him that another tumor showed up on his cheek bone that they didn't see before and that Dr. Cohn thinks it was there from the start. Then, once again, Kosta and Eleni were reminded of how incredibly smart their little boy is. He said, "Why didn't they scan my head in the first place?" It was more a statement than a question. His parents and even Dr. Cohn agreed, that Theofanis was right.

So with this news, fear immediately settled in. It was difficult to accept the concept of another tumor having invaded Theofanis' body. And the fact that the tumor is so close to their son's brain was crippling for Kosta and Eleni. The next day, when Dr. Cohn called them with her recommended plan, she commented that we should all look at this as a blessing that it was found now, because this tiny tumor could have been the sight of a future recurrence.  And recurrence with Neuroblastoma is simply NOT GOOD. She expressed her concern that conducting a needle biospy on the cheek bone will not give us 100% guarantee that there are no active cancer cells. She consulted with radiologists, surgeons, oncologists and the Tumor Board at U of C. Firstly, there is agreement that the tumor most likely was there at initial diagnosis, but was not picked up by MIBG. (Some neuroblastomas are not visible on MIBG). Or, a theory that Eleni and Kosta have is that the cells were already differentiated or dead. Dr. Cohn said that it is highly unlikely that a new tumor would grow on the same side of the body where there is significant decrease in cancer cells (as shown in primary tumor and elbow). Still baffled by this newly discovered tumor, Eleni asked Dr. Cohn if she's had other patients who have experienced this situation. Dr. Cohn told her that she has not seen this before. She also told her that Theo has been different from the very beginning. Another confirmation that Theofanis is truly special. 

So, Dr. Cohn's plan is to be conservative and treat the tumor by either radiation or surgical resection. The ENT surgeon felt that surgery through the sinuses would be too difficult and there's no guarantee that the entire tumor can be removed. And it would be highly probable that the area would need to be radiated anyway. The Radiologist felt that he could radiate the tumor by going in from the sides of his head with the objective of staying clear of the brain. He would also radiate both cheekbones to avoid any future asymmetrical bone growth.  Eleni and Kosta still have many questions and want to consider all options, including proton therapy which delivers less scatter of radiation. But, in the meantime, Dr. Cohn's plan would be to proceed with the Stem Cell Transplant and treat his abdomen, elbow and cheek bone with radiation.

But even late last week, the clear plan of action was still not completely set. Theofanis is participating in a clinical trial. (Most children who are battling childhood cancers are on clinical trials.) This particular one, COG  ANBL0532: Phase III Randomized Trial of Single vs Tandem Myeloablative Consolidation Therapy for High Risk Neuroblastoma, is a current clinical trial that will either prove or disprove the belief that two stem cell transplants will reduce relapse in high risk Neuroblastoma patients. Patients who participate in this trial will be either randomized to either one or two stem cell transplants. Patients must have completed the 6 rounds of chemo, tumor resection, and show decrease in disease in order to participate in the trial. So, if the bone marrow biopsy result continued to show that it is still 100% clear of Neuroblastoma, then Theofanis' name would be put into a computer, and he would have a 50/50 chance of getting either one or two transplants. 

When Kosta and Eleni signed the consent form, they decided to do so with the strong belief that their son's cure is in God's hands. If Theofanis is randomized to one, it's God's will. If he's randomized to two, it's God's will. They do not know for certain which course of treatment is better for his long-term survival, and they do not know what effects additional treatment and toxicity will pose in the future. But what they are certain of is that they must stop this cancer now and do everything they can so that there is no recurrence.  They must do everything that they can to save their son's life.  And they must do it with God's strength and guidance.

So on Monday afternoon, the day before their scheduled admission for the Stem Cell Transplant, Dr. Cohn called and said that Theo's bone marrow was 100% clear. Then, her next call would be news of the randomization. At 5:45 pm, as Eleni pulled into the driveway of her home, Dr. Cohn called with the news that Theo was randomized to a tandem transplant. Not knowing how to react, Eleni was silent. Dr. Cohn told her to think about it. There was still time to pull out of the trial. She also told her she would send a paper that highlighted results of a separate tandem trial conducted by the Children's Hospital of Philadelphia and Dana Farber (Harvard). She said that there is a belief by researchers that two transplants show better survival rates than one transplant. it's not proven, though. Dr. Cohn told her that whatever she and Kosta decide, she will fully support them. As Eleni got out of the car, Kosta emerged from the garage to take Deme to volleyball class. Eleni looked at Kosta and held up two fingers. He stood still and silent. Neither said a word. They both had to think. They were thinking all night long....crying and thinking....crying, thinking and praying....

Theofanis is the first child in this study to do a tandem transplant at Comer. His transplant doctor, Dr. Cunningham (who came to the Glendi) has done multiple transplants before at St. Jude's Children's Hospital. After a long consultation with him the previous week, Eleni and Kosta felt that their son is in good hands. They have and continue to believe that they have put their son in the care of the country's top experts in Neuroblastoma and childhood cancer. Stem cell transplants pose risks. Doing two increases those risks. Eleni and Kosta have a natural concern that Theofanis would be the first child at Comer to do this tandem transplant. The drugs and dosage are different from the standard single stem cell transplant protocol, so Theofanis can not do one and then decide not to do the other.  If they agree to do one, there is no turning back. There are no guarantees that doing two transplants are better. But, many people believe that it is. Doing two stem cell transplants adds an additional 6 weeks of isolation and extends the length of his overall treament.  He may not be home for Christmas. He may have to celebrate his birthday in the hospital, apart from his sisters. These are just a few of the million thoughts that ran through their minds as they looked to make a decision on what to do. But, the one thing was crystal clear for them. If they made the decision to decline the two transplants and just do one, and if the cancer were to come back, Eleni and Kosta would hate themselves forever knowing that they had the chance to attack it with everything modern medicine could offer. So Eleni and Kosta made the decision to place their faith in God that He will heal their son with the path he was randomly picked for...two stem cell transplants.

The morning of Tuesday, October 18th, Theofanis and his sisters gave their good-bye hugs to each other as they set off for school.  In the afternoon, Theo was admitted to Comer Children's Hospital. On Wednesday, October 19th, Theofanis began his tandem stem cell transplant journey. 

The You Tube link below will take you to a video clip of Theofanis' room where he'll be getting high dose chemotherapy, where he'll be receiving back his own "super" stem cells, where he'll be spending the next four weeks in isolation, where he'll be fighting off fevers and infection, and where he'll essentially undergo a rebirth of all his cells!

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INDUCTION THERAPY DONE

THE END OF CHEMO #6 MARKS THE END OF THE FIRST PHASE OF THEO’S CANCER TREATMENT.

The tumor is out. Induction Therapy is over. The Pathology Report Came in.

It’s been an incredible past two weeks of thumbs up days, thumbs down days, and even double-thumbs up days. And for mom, dad, and everyone who has been following Theofanis’ journey, there were finally some tears of joy and a breath of relief that emerged through the fear they continue to carry as Theo fights Neuroblastoma.

THE SPOT

Four days after undergoing surgery to remove the tumor in his abdomen, Theo began his sixth round of chemotherapy. After his nearly six hours in surgery, Theofanis he had a short stay in the intensive care unit and a couple of days of recovery on the 6^th floor of Comer.  As he slowly regained his strength and the surgical team gave the ok, the oncology team sprang into action, wrote the orders, and the chemo bags arrived on Monday.

Theo’s six round of chemo mirrored the fourth round precisely and was done over a period of four full days:

• Chemo Day One @ 7pm:  Vincristine (quick injection), Cytoxan (6 hour infusion), Doxorubicin (24 hour infusion)
• Chemo Day Two @ 7pm:  Vincristine (quick injection), Cytoxan (6 hour infusion), Doxorubicin (24 hour infusion)
• Chemo Day Three @7pm: Vincristine (quick injection), Doxorubicin (24 hour infusion)

The constant flow of Doxorubicin in combination with the other medicines drained Theo's energy. Although his surgery was laparoscopic, he still had some abdominal soreness from the five pokes he had on his tummy.  While he was getting chemo, he also was getting post-op therapy. The Physical Therapist focused on helping Theo walk, regain his balance, and straighten his posture caused by being hunched in bed as he “protected” his surgical area.  The respiratory therapist came by twice a day also to help him with breathing exercises and massages as Theo suffered a partially collapsed left lung.

Theofanis’ appetite took a roller coaster ride as well. First he wasn’t allowed to eat until there were signs his digestive tract was “waking up” after surgery. Then, he was put on a liquid diet. Then, he got hungry and started eating solid foods. But once chemo started, his appetite fizzled and his sense of smell and taste had again changed.  So, as usual, Theo refused hospital food and would not eat much of anything else. 

This hospital visit was proving to be especially trying on little Theofanis. The Wii System sat idle for days, his backpack and homework weren’t touched, and even his Lego sets were mostly assembled by mom and dad. And, visits by his sisters were minimal, too. With school in full swing, Demetra and Sophia were unable to make daily visits to see their brother as they used to in the summer. And as Eleni and Kosta desperately tried to encourage him to do things, they quickly realized that the one true motivator for him was his beloved church’s upcoming Fall Glendi. They posted copies of the Glendi flyer throughout his room and the 6^th floor of the hospital. “Theofanis, you need to eat so that you can be strong enough to go to the Glendi.” “Theofanis, you need to stand up straight and balance on one leg so that you can go to the Glendi.” “Theofanis, you must blow all the air out of your lungs so that you don’t get sick so you can go to the Glendi.” “Theofanis, you are an incredible little boy! You are going to the Glendi!”

As soon as the chemo bag ran dry on Thursday evening, Theo’s discharge papers were signed, and he was on his way home, one week after that cancerous “beast” was removed from his abdomen.

THE LONG-AWAITED PATHOLOGY REPORT 

The instant Eleni and Kosta were told that the primary tumor was successfully and completely resected, they immediately asked, “when will we receive the Pathology Report?” The tumor that Dr. Liu removed--this “beast”--is not only the cause of Theofanis’ suffering and the reason Theofanis is fighting for his life, but it’s also the main source of information that will help doctors confirm his next course of treatment and give Eleni and Kosta some insight into what their son’s future may possibly hold.

To help explain the results of the Pathology report and what it means, there are a few things about Neuroblastoma that people need to understand. Here’s an attempt to explain what Neuroblastoma is…

Neuroblastomas are cancers that start in early nerve cells of the sympathetic/autonomic nervous system. Theofanis’ nuroblastoma started in the nerve-like cells in the medulla (center) of his left adrenal gland. These cells develop from cells in the fetus called neuroblasts. Neuroblastomas develop when normal fetal neuroblasts fail to mature into normal ganglion nerve cells or adrenal medulla cells. Instead, they continue to grow and divide. Some Neuroblasts in young infants can eventually mature into normal ganglion nerve cells or simply disappear. However, as children get older, it becomes less likely that these cells will mature and more likely that they will continue to grow into a cancer. By the time neuroblastomas are large enough to be felt or cause symptoms, most can no longer mature on their own and will grow and spread unless treated.

There are essentially three subtypes of tumors associated with the sympathetic nervous system:

1. Neuroblastoma, consisting of highly malignant, cancerous cells which spread and grow.

2. Ganglioneuroma, a benign (non-cancerous) tumor made up of mature ganglion and nerve sheaths.

3. Ganglioneuroblastoma, a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, similar to neuroblastoma, as well as areas of more mature tissue that are similar to ganglioneuroma.

Theofanis was initially diagnosed with the Ganglioneuroblastoma subtype as his tumor showed both malignant and benign cells. Because Ganglioneuroblastoma contains active cancerous cells, because his tumor spread to his bone, and because he is six years old and considered “older,” he was designated as Stage IV, high risk. There is a wide spectrum of how neuroblastomas can behave. They are simply upredictable and there are no definitive prognostic factors.  That is one of the most frightening aspects of this disease.

So, now back to the much anticipated pathology report….

Nearly a week later, Dr. Arun Panigrahi delivered the results to the Yianas Family.  Kosta was with Theo in the hospital room. Eleni was enroute to Comer after dropping the girls off at school.  Eleni instinctively called Kosta who told her that Dr. Panigrahi was there with good news. The tumor's pathology analysis showed no active neuroblastoma cells!  The once cancerous neuroblastoma cells  are now completely differentiated and have matured into ganglioneuromas which are benign and no longer spread or grow! The tumor had responded to the chemotherapy!  This was the news that Eleni and Kosta were desperate to hear…The news that they constantly prayed for…The news that brought tears of cautious joy and relief…The news that allowed them to take a breath for the first time since May.  Dr. Panigrahi continued to report that they saw some residual tumor cells in the peripheral tissue. These cells also matured into Ganglioneuromas.  Still, no Neuroblastoma!  And as Eleni and Kosta continued to reiterate the news, “No active neuroblastoma cells, right? They found none, right? The chemo is working, right?” Dr.Panagrahi confirmed that this was truly a good thing! 

Even though Dr. Liu completely resected the tumor and removed as much of the surrounding tissue that he could without compromising the aorta or arteries, there is a possibility that there are still ganglioneuromas in his abdomen which may light up during his next MIBG scan. Also, there is a likelihood of microscopic neuroblastoma cells remaining in the bloodstream.  As mentioned before, Neuroblastoma is unpredictable, and this is why Theo must continue on with the remainder of his cancer treatment, namely, the stem cell transplant next month, radiation in the winter and antibody/immunotherapy treatements next spring.  These different modalities should "mop up" any residual Neuroblastoma cells that may be hiding and are at risk of spreading. Eleni and Kosta’s concern then quickly turned to the tumor in Theofanis’ left elbow, which will not be surgically removed. Dr. Panagrahi explained that there is a very high likelihood that the neuroblastoma cells in his elbow have had the same response to the chemo and have also differentiated and matured into ganglioneuromas. The doctors also believe that the tumor in his arm is shrinking because x-rays show healing in the bone and Theo has no elbow pain. Again, Eleni and Kosta were cautioned that the elbow may also light up during Theo’s upcoming MIBG scan, but hopefully with much less intensity.

Later that afternoon, Eleni and Kosta met with Dr. Cohn who re-confirmed the pathology report and the good news. With Dr. Cohn in the room, Eleni and Kosta turned to Theo and told him, “Sweetheart, the cancer cells in your belly are gone. Mommy, Daddy and Dr. Cohn are very happy because Dr. Liu got out the tumor and the cancer cells are not there any more.  Mommy and Daddy are happy and we are so very proud of you! Now, on to making your healthy cells healthier!”

With caution and a bit of uncertainty as to what the upcoming scans will show, Eleni and Kosta felt it necessary to let their son know that his battle has brought him some victories, even though he still has a long road ahead. No one is certain whether the next round of scans will show NED (No Evidence of Disease) or whether it will show some residual ganglioneuroma or even neuroblastoma cells, but what is certain is that the Yianas family was given a reason to celebrate! And what better way to celebrate than with all the people who have shown so much infinite love and support to them. Off to the Glendi!!!!!

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

  Theofanis is a little boy who has an incredible amount of love for his church. Even before his diagnosis, the church was a place of comfort and security, a place of learning, and place where many people expressed attention for his well-being, development and spiritual growth every day. In early August the parishioners of our beloved church, Saint Demetrios of Elmhurst, wanted to do something for Theofanis as he battles Neuroblastoma. In addition to all the support and love that everyone has given him and his family, the Parish Council voted to sponsor and organize their Annual Taste of Greece Fall Glendi to Theofanis’ battle against Neuroblastoma, dedicating all net proceeds to his fund and raising awareness of Childhood Cancer. Under the leadership of George Nassis, chairman of the event, Father Andrew and Presbytera Dimitra Georganas, a beautiful idea and sentiment became a reality in a very short amount of time as the Fellowship Hall and church grounds transformed into an Autumn Wonderland! The Taste of Greece Fall Glendi welcomed friends, family, and supporters from all over Chicagoland!

It was a fun, inspiring weekend for young and old alike: There was fabulous food, sweets and loukoumades! Outdoor games, pony and wagon rides. Pumpkin decorating, face painting, and crafts. A spectactular talent show that entertained with performers earning standing ovations! A star-studded celebrity meet & greets featuring Steve McMichael, Dan Hampton and Jimmy Piersall. An incredible silent and live auction featuring unique, creative and luxurious prizes from Hollywood treasures to coveted sports events and wine and dine adventures. Head shaving and Pantene Great Lengths Hair Donations brought kids and adults of all ages to show their support of the many heroes who are battling cancer. Music and dancing added a festive vibe. The Saint Demetrios Taste of Greece Fall Glendi raised awareness of childhood cancer and the need for research, and honored the brave warriors like Theofanis who are fighting for their lives.

The Yianas family felt honored to be able to attend this incredible event. And with the fantastic news they received from the pathology report just a few days earlier, the Yianas family was eager to share their happiness with their entire family of Saint Demetrios. And, they were thrilled that Theofanis himself was able to attend and witness the outpouring of love for him. Although he was tired and still recovering from the effects of surgery and chemo, he displayed stamina throughout the event and refused to go home. He quietly rested in Father Andrew’s office when he felt worn out. But, Theofanis loved seeing everyone he has known and loved throughout his young life.

On Sunday, the Yianas Family sponsored the Artoclasia during the Divine Liturgy. The Blessing of the Five Loaves was for the health and well being of their entire family. With sweet and emotional words echoed by Father Andrew, Kosta and Eleni felt incredibly blessed and thankful. It was a beautiful closing to a wonderful weekend…a weekend that brought smiles to their faces, hope to their hearts, and thankfulness for the gifts that God has bestowed upon them.

The Yianas family would like to thank Father Andrew, Presbytera, George Nassis, the Parish Council, the committee chairpersons, Father Panayioti, all the fantastic volunteers, aunts, uncles, cousins, koumbaroi, friends, and those who came out to support Theofanis this past weekend.  Thank you for your extremely generous donations, for your time, your support and for your constant prayers. To all, you have become our family!  You all have cried with us along this journey, and we were honored to be able to celebrate with you this past weekend! We continue to pray for many, many more celebrations to come!

RAISING AWARENESS

In August, the Yianas family had an opportunity to talk about Theofanis and create awareness for Neuroblastoma on a national level.  Kosta was interviewed by The Orthodox Christian Nation for one of their radio/pod cast talk shows, Come Receive the Light, hosted by Father Chris from Ft. Lauderdale, FL.  The interview aired in September during Childhood Cancer Awareness Month.  To hear the interview, go to www.myocn.com and click on their Come Receive the Light program link.

RECOVERY FROM CHEMO #6 SENDS THEO BACK TO THE HOSPITAL

It was obviously a busy weekend for the Yianas family with the Glendi, the Artoclasia, and even a family wedding on Sunday where they celebrated the marriage of Bill and Zehenia Mourousias, their symbetheroi. Theofanis’ counts held up strong during the first few days past chemo. He was tired, rested when needed, but it felt good getting out of the house. Even his brief appearance at the wedding to pose for a family portrait brought a smile to his face. He was able to stay strong and fight off any threat of viral or bacterial infections! But, there are some things that Theofanis nor his parents can fully control, and those are the side-effects from the chemo drugs.

Theofanis was admitted to Comer Children's Hospital a few days ago and is in an isolation room suffering from post-chemo side effects which include a fever, jaw pain and mucositis which are sores that can go from the mouth down through the stomach. These were the same symptoms he suffered when he was neutopenic from his 4^th round of chemo. He is being treated with morphine, has already had a red blood cell transfusion, a platelet transfusion, and is on antibiotics as a profilactic against a bacterial infection. The trip to the ER was expected, but brave Theofanis fought hard against it. He was 11 days out from chemo when his body could no longer fight the effects from this particularly rough drug combination. (Last time, he was back at Comer within 7 days.) Although he is uncomfortable, Theo is resting and patiently waiting for his counts to recover so he can go home. But, his spirits perked up significantly when his sisters visited today. Plus, his dad brought ice cream from home! While at Comer, Kosta and Eleni have started to meet with the Stem Cell Transplant team to begin discussing Theofanis’ next phase of treatment. It is scheduled for Tuesday, October 18^th.